Thursday September 4, 2014
After an awesome trip to Italy, my follow up brain MRI and
cat scans have remained stable but because there was concern that it's just a
matter of time before the brain mets grow, multiply, and cause symptoms, my
oncologist at Yale discussed my situation with the researchers running a trial
of a 2nd generation alk inhibitor. In the end, they both agreed I have
most likely gotten all the benefit I am going to get from the clinical trial
drug I have been on for the last 4 years, and surprisingly, the researchers made an exception and offered to enroll me in
their trial. This is a really big deal! The best part about this was I did not have to do
gamma knife for the brain mets before starting the trial!
This new trial opened about 2 years ago. It was developed to overcome known resistance pathways discovered in recent years when someone progressed on Xalkori, the drug I have been on for 4+ years. Considered a stronger alk inhibitor, an unexpected finding was it demonstrated effectiveness in some people with brain mets.
So on July 1st, I started the new trial. I just found out that my first 2 month scans have shown the brain mets are smaller and my chest remains
stable!!!! What a giant freaking relief!!! It has been a rough couple of months as I have experienced withdrawal symptoms from coming off the old drug and side effects from the new drug. It has taken some time for things to improve and I expect it will be a while yet before I know what's what.
The drug is oral and I take it once a day. I have had headaches, joint pain, more fatigue than on my old drug and elevated liver enzymes which are being monitored closely. The good news is much of the swelling I had in my lower legs and hands and arms has subsided. It was pretty scary to be switching up treatment after such a long stretch on a drug that was keeping the cancer in check. It's been hard not to worry and there has been some sleepless nights. But I have learned long ago to take full advantage of the days I feel well and enjoy every moment.
Tomorrow Ralph and I are heading to Boston to attend a conference for people with lung cancer who are interested in learning about acquired resistance to targeted therapies. Speakers include Dr. Shaw from MGH who I saw after my brain mets diagnosis and other renowned lung cancer docs from around the country. What an opportunity to be able to learn from the leading oncologists about current and future treatment options. They are also very interested to learn from patients about their experiences with targeted therapies. Bravo to the sponsors for hosting such an event! Another very cool thing will be meeting other people with lung cancer who I have connected with online over the last several years. Pretty amazing!
Back to Italy-it was an incredible trip. Check out the pictures I posted. The highlight of our trip was meeting Caterina and her family in Venice where she lives and happens to be the only person on Xalkori, in that city. Caterina's brother had posted some questions on an alk inhibitor discussion thread I frequent online about Xalkori which she had recently started on. I responded and learned they were in Italy. I shared we were planning our first trip to Rome and Venice in April and he said we must meet up. And so we did!!! Caterina was kind enough to spend a day with us, showing us the sights of her beautiful city. She is doing well on Xalkori. I shared our story with Dr. Shaw in Boston who welcomed Caterina's oncologist to call on her should he ever have questions. Caterina and her family were so pleased and she relayed to me that her oncologist was as well.
I wanted to give a shout out for Jared who is doing the Closer to Free
Ride for Yale's Cancer Center THIS Saturday, September 6th. The ride starts and ends at Yale Bowl and after heading out at 7:00AM, the first stop is at Smilow Cancer Hospital where patients (who are able) and staff are out front to cheer the riders on. I get so emotional just thinking about it. Jared is doing the 62.5 mile ride with his Uncle Tracy and his friend Charlie. Good luck guys!
Thank you so much to everyone who has already donated! We are touched by your generosity! For those who would like to contribute, please visit closertofree.org and search Jared Streeto. Ralph and I won't be here to cheer him on but we have made a big sign to post nearby one of the rest stops in Durham before we leave tomorrow. I don't think they will miss it! And Jared will be wearing a GPS device so we will be able to track his progress and cheer him on from afar. Anyone else who wants to follow his progress can go to MyAthleteLive.com/Events and download the free app for Iphone, Ipad & Droid. Go Jared! Go Tracy! Go Charlie!
I hope everyone has had a great summer and is doing well. Thank you for your love and caring and prayers!
Sending hugs and lots of love!
Monday March 31, 2014
Hello family and friends,
Many of you now know that my every 6 month surveillance brain MRI in February (which I have insisted on having done since my diagnosis), showed 3, possibly 4 tiny metastatic lesions. While I was having some headaches, no one believes they are related to the cancer because they are so small, although I wonder if my body was trying to tell me something...
And while I am not surprised about the brain mets, it did suck the wind out of our sails for a couple of weeks. The drug I'm on does not cross the blood brain barrier which means not enough of the drug can get in there to stop their growth. My option at this point is to have gamma knife, a pinpoint type of radiation. There are three 2nd and a 3rd generation alk inhibitors in clinical trials that do cross the blood brain barrier, but I do not have enough measurable disease to go onto the next trial. Such a catch-22 that many people with cancer often face. The good news is, my chest remains stable without evidence of progressive disease. The recommendation is to stay on my clinical trial drug as long as possible.
After seeing the neurosurgeon and radiation oncologist at Yale, we traveled to Boston to see one of several world renown alk experts, Dr. Alice Shaw at MGH. She was so helpful in outlining a plan of care and in helping me to understand the best sequencing of the next trials when I do become eligible.
For now, the plan is to repeat the MRI in mid April and proceed with the radiation procedure but not till we get back from ITALY! We started planning our trip in January. This is the trip we have always hoped to do. Shirley had just returned from one of her many trips there and encouraged me to go for it. She also has served as our personal travel agent and without her help, I know it would still be only a dream. I had also recently lost yet another young friend way too soon to this disease. Time is never on our side is it? And I knew I would never feel any better than I do now. The brain mets took the joy out of the planning for a while as we weren't even sure we would be able to go but after our trip to Boston, we got back into planning mode. Even though our trip was last minute, friends Rosie and Barbie were able to get time off and will be going to Italy too. Ralph, Rosie and I will spend time in Rome and then head to Venice where Jared and Barb will meet us. Soooo happy Jared was able to get some time off to go too.
And speaking of Jared, he was promoted again! His new title is Senior Research Project Manager. Congratulations Jared! We are so happy for him and all he has accomplished in such a short time at Ipsos. Jared has also joined the Smilow Cancer Hospital Closer to Free Ride team sponsored by Branford Jewelers. He will be riding 62 miles on September 6th with his Uncle Tracy and owner of Branford Jewelers, Charlie Steinberg. You can find Jared's webpage at rideclosertofree.org, search Jared Streeto. Thank you to everyone who has contributed already!
I also want to thank all of you for your love and support, prayers and encouragement, meals and offers of help. I have gotten some of the most touching calls, emails and cards from family and friends. I want you to know these acts of kindness stay with me and are very comforting as I face yet another major challenge in my life. I am so grateful....
Much love and many blessings to all of you!
Tuesday, June 11, 2013
After a long winter and delayed Spring, I'm back. I hope you are all well and enjoying life.
Yesterday was another milestone, 3 years on my clinical trial! And in April, I made the 5 year mark! All of this is truly amazing! In research, we call people like me an outlier. By definition, it is one that appears to deviate markedly from the other members of the group. Or as my family likes to call me, a deviant. I'm not offended!
The new year brought one thing after another, respiratory illness, tendonitis of my right shoulder, persistent headaches (brain MRI normal), and then Mom was sick. All got better until I got sick again with a viral pnuemonia that I had to be hospitalized for. It took me quite a while to recover only to end up with a cellulitis or skin infection which required another hospitalization and IV antibiotics. I am feeling much better now and am due for a scan next week.
In between hospitalizations, Ralph, Jared and I did a trip to FL where we got to visit with my brother Rusty and Sue. Rusty entertained with stories, some of which I have no recolletion of. We drove down to Key West and spent several days there. Definitely worth a trip! Roosters roaming the streets, a cast of characters on every block, and beautiful sunsets. We spent the last night in Miami. Jared scored a couple of tickets and he and Ralph went to the first playoff game with the Miami Heat. LeBron James had just been named MVP and the fans were just besides themselves. Jared and I did get to see South Beach although briefly. That was the most beautiful of all the beaches we saw that week. Soooo nice to spend time with Jared too. A getaway was just what we all needed.
Besides all my stuff, Jared has been working very long days and Ralph had quite the winter truding through massive amounts of snow.
I'm on my way to pick Ralph up from the airport. He's been sailing the Cheseapeake Bay with his longtime friends Pete and Chris. He returns to work the first week of July so we hope to get in a road trip or two before then. This past Saturday, I did a bus trip with girlfriends Lisa and Liz to the Brooklyn Botanical Gardens. We had a wonderful time. The roses were in full bloom! Otherwise, we have been busy with yard work and gardening and enjoying each day.
One other highlight this year was running into an old friend and nursing buddy, Pat Grodski, at Yale one day. She invited me to a tea in honor of Sister Kate, who was visiting from the Dakotas and celebrating her 80th birthday. We had worked with Sister Kate in the early 80's (YIKES, more than 30+ years ago) at CT Hospice. It was great to see her and many of the other nurses I use to work with. Another speical group I have had the privelege to work with!
I will be back to post some pictures.
Thinking of all of you and sending hugs and lots of love!
Tuesday, October 23, 2012
Celebrating another stable scan and my 57th birthday!
Hines 57 it is!
I was 52 when diagnosed with stage IV lung cancer. Four and a half years
later, here I am, still living despite a disease that few survive. Some call it miraculous, I call
it luck. And that is the point of my update today. Surviving lung
cancer should never be about luck but rather about effective treatments for all
The sad truth is, lung cancer has never received the public attention or research dollars in proportion to it prevalence or deadliness. One reason is the belief that the person with lung cancer must have smoked and therefore, they somehow "deserve it." The American Cancer Society has done a fine job of educating people about the risks of smoking and lung cancer, but an unexpected consequence of their actions, has led to shame and isolation for many of those diagnosed with lung cancer. And that stigma is one reason for the lack of research funding for a disease that will kill 160,000 people this year. That is more deaths than there will be from breast, colon, pancreatic and prostate cancer....combined.
November is lung cancer awareness month. It falls on the tails of breast cancer awareness, another worthy cause. But the one thing lung cancer doesn't have that breast cancer does, is survivors. The survival rate for lung cancer, for all stages combined, is 15%. That means, out of 100 people diagnosed, 85 will be dead in 5 years. And that number hasn't changed much in the last 40 years. For comparison, the 5 year survival rate for colon cancer is 65%; for breast; 90% and for prostate; 99%.
Have I got your attention yet? I hope so. Thank you for listening. You too can help raise awareness about lung cancer. A great website for information and videos that will touch your heart is lungcancerleaders.org.
If everyone who reads this passes the above link onto another person, know that you have already made a difference in raising awareness. Educate your neighbor, your coworker, your legislator. Please help to
be the voice for so many who are too sick or for those who never had a
On Tuesday, November 13th, Middlesex Hospital Cancer Center will be hosting the 2nd Shine a Light on Lung Cancer program from
6-7:30 pm at 538 Saybrook Road in Middletown. The event, sponsored by the Lung Cancer Alliance, honors all those whose lives have been touched by lung cancer. While the event will be held in different locations around the world, ours will be the only event in Connecticut. If you are unable to attend but want to show your support, you can sign up at lungcanceralliance.org
With heartfelt appreciation for your love and support,
Thursday, August 16, 2012
My most recent scan was stable. I have been experiencing more swelling of my feet and ankles with the hot weather which is a minor annoyance, sometimes more so. I also have noticed some swelling of my left hand which at first I thought might be related to my power port that is on the left side of my chest but that is working fine. It does seem to be activity related too. My drug can cause swelling of the hands although I haven't heard more than 1 or 2 people report it. I keep forgetting to tell my research team...okay, just wrote it down for them....chemo brain!
It was a Girls Gone Wild weekend earlier this summer. A group of us went to see Mavis Staples and Bonnie Rait perform at Mohegan. What a great show! We stayed at a converted carriage house in Mystic that was an easy walk to Main Street where we did a little shopping and had some great food. Ralph surprised with us a limo to take us to and from the concert. Thank you Ralph! We also got a beach day in and went out on a schooner.
Happy 26th Birthday Jared!!! We spent Father's Day together in Norwalk. He's been doing a lot of biking and hiking and has found his way to some beautiful areas. We got to see some of the Westport shoreline and an old mansion in the woods that is now a park. Very pretty. His promotion at Ipsos is official and I proudly share that announcement with all of you.
joining Ipsos 2 years ago, Jared has played an extremely critical role
in the success of the Anheuser Busch InBev account, particularly over
the last year. In addition to gaining a clear understanding of ASI’s
philosophy and varied methodologies in such a short span, Jared has also
proved to be flawless in executing studies from their inception to
has been instrumental in creating several lessons learned for global
brands, such as Stella Artois as well as local brands such as Michelob
Ultra, which were very well received by the client. He has also shown
strong potential to accurately analyze ASI data and recently did an
outstanding job putting together an analysis for Miller re-launching
their “Miller Time” ad campaign.
detail oriented nature as well as willingness to contribute and own
responsibility has led to him being the sole owner of the extensive ABI
global database, which is the source of several analyses that have been
generated and presented to Senior Management at ABI. This initiative has
also helped Jared be the primary point of contact for several local ASI
teams in ABI’s key global markets.
his promotion, the scope of Jared’s responsibilities will increase to
involve greater and direct interaction and accountability with CI
contacts at ABI. Based on the high level of commitment and worth ethics
that Jared has shown in his CSA role, we are confident that he will
continue to succeed in his new role as well and make ASI proud."
Way to go Jared! He is heading to China the end of September for another Jared adventure.
Despite the hot and humid weather of late, there have been some perfect summer days. We had a chance to get to East Beach a few times. I was glad to share a couple of those days with Theresa and Tracey who always make a good time even better. Nothing is more healing than sharing sunshine, blue skies, the smell of the ocean, a gentle surf, and lots of laughs. Another night we met up with Cousin Brian and Debbie for a sunset sail out of Westbrook. We got to enjoy another Open Garden Day in Litchfield County too.
We celebrated a couple more family birthdays (Aunt Mary, Shirley, Cousin Michael, Emily turned 12 last week!), and then the last of the Latina boys, Michael, got married mid-July. A week later and shortly after my scan we headed to Prince Edward Island, the Magdalene Islands (halfway between PEI and Newfoundland), and Nova Scotia for an 11 day trip.
What an amazing part of the world! It took 2 days of driving through Maine and New Brunswick to get to PEI where we stayed in Charlottetown, a historical town that is also the capitol. We entered PEI via the Confederate Bridge, an 8 mile long bridge with spectacular views. As we headed eastward towards Charlottetown, we were greeted by rolling hills, distant water views and fields of bright yellow green, white, and pink flowers. I soon found out the lime green yellow flowers were canola. The white and pink flowered plants were potatoes, white and red of course. Potatoes are the number one export and are grown all over the island. Upon hearing this and then reading that some of the best tasting potatoes you will ever have are in PEI, we were sure to include them in some form whenever we ate out. Melt in your mouth deliciousness!
After a couple of days of exploring Charlottetown and the beautiful north shore beaches of PEI, we headed east to Suri, where we boarded the ferry that would take us to the Magdalene Islands, a 5 hour ride north of PEI in the Bay of St Lawrence. The islands are an archipelago, or as an elderly gentleman referred to them, "that big old sand bar in the middle of nowhere." They belong to Quebec. People speak French which was a bit of a challenge for us. We had 4 nights and 5 days to explore each of the little islands and their unique character. No matter where we were, there was always a water view. Again, here, the scenery was spectacular. The hills are dotted with brightly painted homes which is an island tradition started many years ago by fisherman who would use their brightly painted home to help them navigate when out on the water.
We were sad to leave but looked forward to returning to Nova Scotia where we were going to see friends we met last year. We ran into Sharon and her mother, Margaret, on 3 different occasions in 2 days while visiting the Digby area. Like everyone up here, they were so friendly and we found ourselves engaged in conversation. We had a good laugh about our repeated encounters. Sharon, who was in a wheel chair and on oxygen, shared that she had pulmonary fibrosis and was on the waiting list for a bilateral lung transplant. I shared my story with her and we have kept in touch over the last year. She and her Mom recently returned from Newfoundland and had wonderful stories to share of their adventures there. Newfoundland, by the way, is on Ralph's short list of places to go.
I'm still recovering from the trip, but that's okay. Thank you Ralph for all the driving you did. It's a whole lotta time in the car. Of course you can fly to NS, PEI or the Magdalenes, but it is expensive. And we got to see so much more by driving.
Hope you all are having a wonderful summer. I appreciate all the good thoughts and prayers!
Saturday, June 2, 2012
June is bustin' out all over! All over the meadow and the hill! (Hope those lyrics bring back memories for you, Sista Shirley, and our stellar dance performance for the hood!)
All is good, very good. We've been celebrating my 4 year anniversary over and over again. My last scan was stable and the next will be in August. I love not having to go to Yale every 3 weeks. In 8 days it will be 2 years since I started the trial. I feel another party coming on. On Mother's Day, I realized that while it's been 4 years since I was diagnosed, I was celebrating my FIFTH Mother's Day! Jared was 21 years old and he will be 26 June 24th. Not a day goes by that I don't revel in gratitude for all that I have including all of you!
While it's been a while since the Boston Marathon, I'm sure you all remember how hot and humid that day was. Thousands of people opted out and many had to drop out due to heat exhaustion. I'm so pleased to tell you that both Mary Kate and Jamie finished the race. As expected, because of the heat, it took them longer than their predicted times but the fact that they both completed the race is just amazing, just like them. It was really cool to follow their progress and time on line. Shirley and Mike met Chris in Boston and got to experience the excitement first hand. They said it was unlike anything they had seen before. There was so much support and encouragement for the runners. I know the winners of the race are amazing in what they achieve, but I find stories like Mary Kate's and Jamie's and so many others who run for a cause, the real heart of the race. Thank you Mary Kate and Jamie!
Two weeks later, Ralph and I met Jared, Shirley and Mike in NYC for the Lungevity Annual Lung Cancer Run/Walk in Central Park. We spent the weekend and got to see the 911 Memorial on Saturday which was so moving, so beautiful. On Sunday morning 10,000 runners and more than 600 walkers participated in the event. It was one of those crisp, clear blue sky days and the park was perfectly groomed. We got to watch the start of the race from the sidelines as we were a little late getting there thinking the event started a half hour later than it did. But I'm glad it worked out that way because watching all the runners go by was special. As you know, lung cancer just doesn't get the attention or research dollars it needs and to see so many people out there supporting the cause was very humbling. And we got to see Victor, Jared's roommate, run by. We would have missed him had we been on time. Jared was suppose to run but was having a problem with his knee so he walked with us. Anytime with Jared is always a treat for me!
We have had a very busy few months. There was not one, but 2 trips to Exit 105. There have been wedding showers, anniversary celebrations and birthday parties. And in the midst of all that, Theresa, my sister-in-law had surgery. So glad you are feeling better Tree!
I wanted to share the Open Garden Days website with everyone: www.gardenconservancy.org
is a national program where private gardens are open to the public,
usually on a weekend for a small fee. We went to one in Washington
which is in Litchfield County a couple of weeks ago and came away so inspired. You can spend as much time as you like taking it all in. This particular garden will be open again later
this month as well as several others nearby. Maybe another road trip... It's a great way to spend a
day and I'm glad Ralph enjoys it too.
Speaking of Ralph, he started his lay-off. He's busy with projects around the house but hopefully after this week we will be able to get away for a couple of days here and there. I love that we have this time together. And I love all of you!
Sunday, March 25, 2012
Well hello Spring! The daffodils, myrtle, forsythia, magnolias, and cherry blossoms are all in full bloom here in Middletown. All the birds are back including a pair of red-shoulder hawks who make their presence known with their intimidating shrill cry. In the last week, I have removed 3 dog ticks from various body locations and found another on the bathroom wall. They creep me out....
All good news at 600 Arbutus. My last scan was stable. I found out this past week the scans will now be done every 3 months, (changed from every 6 weeks) and visits every 6 weeks instead of every three. A long awaited change as I have been known to ruminate (a little) over be scanned to death. Sure don't need any new problems. I did have an endoscopy in February and as expected there was evidence of inflammation of the esophagus. Many of us on the drug experience this symptom. Unfortunately, there is a likely drug interaction between the trial drug and drugs like Prilosec, so I was using it sparingly which meant I wasn't getting the full benefit. I think more than anything, time has helped to resolve the pain I was having with swallowing and the reflux is always going to be an issue. A small price to pay right?
My sister Sue is back to working part-time. As she was told, the recovery is a very slow process and while she is feeling better she has a long way to go. Healing thoughts to you Sue!
Check out the pictures of the greenhouses at Smith College in Northhampton. Liz and I took an impromptu road trip to see their bulb show. So beautiful. I made a slideshow and will see if I can post it here but if not, enjoy the pictures.
Ralph and Jared are well. Despite the mild winter and recent warm weather, Ralph is still working and will be through mid May. Then off for 6 weeks at that time and again in the fall. Still working on some plans for returning to Nova Scotia and Prince Edward Island in August. Jared is heading to CA in May for a high school friend's wedding and then he is hoping to go to China in the fall. Go for it Jared! If anyone has been, he would love to hear about your experiences.
I also wanted to share with all of you that my nephew, Chris Cheverie's girlfriend, Mary Kate Bergen, is running in the Boston Marathon to raise money for the Dana Farber Cancer Institute research program. I didn't know that one has to qualify to run at this level in the marathon so congratulations to Mary Kate! Yesterday while we were celebrating Shirley's granddaughter, Madison's 6th birthday, Mary Kate was out running 22 miles as she continues training for the April 16th event which just so happens to be my 4th year anniversary!!!
I also extend my condolences to her and her family on the death of her uncle who recently died from lung cancer. He was one of the people who inspired her to participate in the marathon. Please take a moment to read her webpage (copy and paste) and consider supporting her efforts to help in this much needed critical research:
And this is where the money goes:
The Barr Program and Its Impact
Claudia Adams Barr Program in Innovative Basic Cancer Research at
Dana-Farber Cancer Institute is widely recognized as one of the largest
and most successful programs of its kind. Based on a rigorous and highly
selective process, the Barr Program funds the brightest, most creative
scientists making basic research discoveries that are transforming
cancer treatment. Barr Investigators have made numerous major
breakthroughs resulting in improved survival rates and quality of life
for thousands of patients everywhere. Here are brief descriptions of 16 selected projects supported by the Barr Program, illustrating some of the program's most significant impacts to date.
The Barr Program was established in 1987 by Dana-Farber Trustees J. Wayne and Delores Barr Weaver in memory of Delores' mother. One hundred percent of the funds raised by DFMC team members support Barr Program research initiatives.
Jared also has a friend who is training to run in the Marathon for DFCI. Jamie sent a note recently and asked if she could add my name to her shirt. I am honored and so proud of both Mary Kate and Jamie, two remarkable young women! Between the 2 of them, they have already raised nearly $11,000! Thank you so much for your extraordinary efforts!!!
Here's Jamie's website link:
Thank you everyone for taking the time to check in.
Love to all of you!
Saturday, January 14, 2012
Happy New Year 2012!!!
Shortly after Christmas, my sister Sue had a thoracic spinal fusion for a herniated disc that has been causing her a great deal of pain and leg weakness. It's been a rough postoperative course with her having to stay longer in the hospital and then a trip back to the ER less than 24 hours later for abdominal pain. Two weeks out and she is finally starting to feel better although her surgeon has told her healing will take months. I'm glad I have been able to be with her, especially in the hospital, where she needed an advocate every step of the way. Feel better Sue!
Ralph and I attended Middletown's first ever First Night Celebration and while we we're home by 9:30 PM we packed in a lot. Main Street was crawling with peeps and at
6:00 pm, we met up with many of them at the corner of Washington and Main to watch fireworks that were launched from the top of one of the buildings. The traffic was detoured and hundreds of people were in the middle of the intersection, that in itself was very cool. Prior to that we watched a raw vegan sushi demo, interesting. After a glass of wine at Esca's, we marveled at the 2012 ice sculpture that had been made earlier that day. And we finished up at First Church where we listened to an alternative rock band that had people dancing in the isles. There was so much more happening that night and all of it was readily available on an app you could download on your phone. It was great to see so many people on Main Street. And I'm glad I got to experience the festive feel good vibe that it was!
Ralph, Jared and Chester are all great. We enjoyed Thanksgiving with Cousin Brian and the Denker clan here at 600 Arbutus. Before Christmas, my dear friend from growing up, Kathy, and I got away for a long weekend to Falmouth MA, where we enjoyed good food, even better margaritas, and some awesome sunsets. Christmas Eve was here with Cousin Brian and daughter Britt and her fiancé Paul, who were visiting from Texas. Britt received "Rookie Teacher of the Year" and along with her recent engagement there was lots to celebrate! It was off to Theresa and Tracey's for Christmas dinner with the Streeto's where Joyce entertained us with a Christmas dance that I understand is on YouTube. She's such a party animal!
I'm scheduled for scans next week. Feeling tired but okay. Having some pain with swallowing that may be due to inflammation of my esophagus, possibly from my trial drug.
I know most of you are enjoying our mild winter. I know I am. Two weeks ago I saw robins......how wild is that! And two days ago I was sitting with Sue watching the torrential rain when it seemed to suddenly stop, the sun came out and there was a full double rainbow. Amazing! Yes, it was. The following day we were returning from our acupuncture appointments and commenting how big and beautiful the low lying clouds were against the blue sky. We stopped for lunch, the sky darkened, it started to rain hard, turned to hail and boom, the sun came out and there was another full rainbow with the most vivid blue and green arches. Instant joy! Two rainbows in two days! Nature so inspires me. As so many of you do! It's always great to hear from you. Thank you for thinking of us and for all your love, caring and never ending support!
I'll be back to post some pics soon.
Sunday, October 16, 2011
Hello friends and fam!
The photo above was taken at our nephew, Chris's high school graduation in June. Many of you know Joyce, my mother-in-law (Ralph's stepmother) who is sitting on the far left. Joyce underwent coronary bypass surgery on Friday at St. Raphael's. She is doing remarkably well and we are all grateful for the wonderful care she is receiving. As a matter of fact, I worked with her doctor in the surgical intensive care unit, Dr. Kachne, more than 30 years ago, when I was a nearly new nurse and he was a young, competent and outstanding surgeon. And at 71 years old, no one was more surprised than I, that he was still doing surgery. We heard from so many people, he is, hands down, who you want. And so right they were. His skills and team, several of whom I also remember working with, were wonderful and caring. Dr. Kachne is known for being able to do his bypasses faster than anyone else. That's quite an achievement to hold onto after all these years. Being at St. Raph's was definitely a time warp for me. Not much has changed including the main hospital telephone number which I can still pull from my memory banks 30 years later...despite having chemobrain!
If you were catching any of the news 6-8 weeks ago, you may have heard my trial drug was FDA approved. It's new name is Xalkori. I know we often wonder how they come up with these names, but this one actually makes sense. "Alk" describes the mutation. "OR" stands for oral and "I" for inhibitor. So it's an oral alk inhibitor. This is great news for people who do not live near a major cancer center and are eligible for the drug. Of course, like any new drug it's very pricey, but probably not so different from what chemotherapy and the all the costs that go along with that are. I'm sure someday it will be first line treatment for people who have the mutation. Right now, someone has to progress on chemo or post chemo to be eligible.
Thankfully, Ralph is feeling much better although he still has some minor residual effects from the Lyme disease. He tried acupuncture and was surprised at how much it helped his neck pain. He returns to work tomorrow and I am going to miss him being home. As much as it sucks for him to be laid off and be paying big bucks for COBRA, we have been enjoying our time together. In August, we drove to Nova Scotia and Cape Breton Island, a place we have wanted to visit for years. With lots of helpful information from friends Peg and John who have family there, we had one of the nicest vacations ever. I wasn't sure how I would handle all the time in the car, but we paced ourselves and it was fine. The people are some of the friendliest people we have ever met and it was they who made the trip so special. They and the jaw-dropping scenery. Check out the pics!
Jared is doing well. He and his bud, JR flew to Rome in September and did a Western Mediterranean cruise. Just yesterday I received an email from one of the ladies who was his dinner table mate telling me how proud I must be to have raised such a wonderful young man. Edna is 70 years old. It was really nice to read her note. I think he's pretty special too! Love you Jared!
September brought another wonderful trip to the Vineyard and when we got home, a visit from Anne Resnick, a blast from the past from Phoenix. Anne and I worked together in hospice 20 years ago. She was the social worker. Our sons were 4 and 5 years old when we met and they still keep in touch with each other which is really nice to see. While she was here, we had a long overdue jewelry party with Wendy. The timing was great as we both got to see lots of people we haven't seen in ages. Thanks to everybody for coming!
I continue to feel well. Celebrated my 56th birthday on the 5th. How lucky am I! My scans have been stable with the last one showing a bit of inflammation. Sometimes the drug can cause this but I have no new symptoms so I continue on. I have been on the trial for 16 months. I'm due for another scan next week.
And speaking of lung cancer, Middlesex Hospital Cancer Center is hosting their first Lung Cancer Alliance program titled, "Shine a Light on Lung Cancer" on Tuesday, November 1, at 6 :00 PM on the South Green in Middletown. I will be one of several speakers and will post more information about the event in the upcoming week. Lung cancer gets so little funding and media attention yet is the number one cancer killer. Unfortunately, we don't have the survivors to carry on the cause. Which in itself, is why it's so important to raise awareness.
I hope you can join us!
As always, thank you all for your support and love. It is greatly appreciated and cherished!
My best to all of you,
Tuesday, July 5, 2011
Greetings and Happy Summer Everyone!
Lots going on here at 600 Arbutus.
First, I had a stable cat scan and am feeling pretty well. It's was a year in June since I started on the clinical trial. People often ask me how long I will be on the drug and the plan is to continue it as long as it is helping. Studies to date have shown that the time to disease progression has actually improved. Initially it was 6 months, then 9 months and now it is about a year. Hopefully I, along with others on the trial, will continue to respond and extend that time frame further. There has been some very important and exciting information about my mutation, known as alk, that has been discovered. While researchers have always known that the cancer eventually develops resistance to the drug, they have discovered at least two of the mechanisms by which that happens. And with that information, a couple of drug companies have already begun working on the next generation of targeted therapies. Yale hopes to open one of the trials in the Fall.
And now all about Ralph. He was diagnosed with Lyme disease in early June after presenting with high fevers and flu like symptoms. He started on an antibiotic and was feeling better for about a week when he began spiking fevers again and developed acute neck pain and stiffness. It got so bad he ended up in the ER where they did a spinal tap to rule out Lyme meningitis. Thank goodness it was normal. He had a cat scan of his brain too and while there wasn't any evidence of infection, they did see a mass behind his right eye (more on that in a moment). It turned out he was co-infected with a second tick borne illness, erhlichiosis, and they changed his antibiotic. He's feeling better but still having issues with neck pain and fatigue. He saw his eye doctor and had a MRI of the orbit. No one is exactly sure what the mass is, it could be a varicose vein or scar tissue, but the good news is he's not had any visual changes. Because he's never had a scan before, we don't know how long it's been there either. The plan is to do another MRI in 6 months. I can't ever remember Ralph being so sick. I was worried about him.
And now Jared. He turned 25 on June 24th! Happy Birthday Jared! He's loving his job in Norwalk. The company he works for does a summer schedule where they work a half day on Fridays. Never saw that happen in nursing did we? He and roommate Victor have moved into a bigger condo that's equipped with a racketball court and a pool. Life is good!
We celebrated a few other milestones this Spring. My Mom turned 80! And my brother Rusty surprised her with a visit on her birthday. We had a lot of fun with him and Sue. Rusty spent more time playing outside with the Denker children than hanging with the adults. Some people never grow up.... He left with all his favorite treats. The car was stacked with cases of Hummel hot dogs, Foxon Park soda and checkerberry syrup.
Shirley's son Ryan and wife Alicia welcomed their new baby girl Cadence. Congratulations! She is so precious! Check out her picture with big sister Madison.
Ralph and I were also able to get back to Maine in mid May. I met my friend Liz at Soakology in Portland. Liz grew up in the area so she gets to go back frequently to visit and care for her Mom. I raved about Soakology 2 years ago when I happened upon it while tooling around the city. This is the place that's a tea house and offers a variety of foot soaks and massage. We had a wonderful experience and I only wish it wasn't so far away! Definitely should go on your list of things to do!
And after Ralph got diagnosed with Lyme but before his relapse, we got to the Vineyard for a week with Barbie, Rosie and Dennis. Rosie has a friend out there who flies and he gave us an hour long tour of the island. It was a beautiful day and what a thrill it was to see the island from the sky. He took us out to a sandbar in Nantucket Sound where we could see hundreds of seals. It was spectacular!!!
And on that note, you are up to date on life here at 600 Arbutus. I hope all is well and you are enjoying our long awaited summer.
With love and gratitude from our home to yours,
PS: The photo above was taken at Maren's home who hosted a party celebrating several Springtime events including my 3 year anniversary. And yes, eat your heart out, not over Jared, but the homemade whoopie pie cake. Thank you Maren!!!
Thursday, April 14, 2011
Just getting over a cold that had kicked my butt but finally starting to feel better on this beautiful Spring day. All good news on my most recent scan! After being stable for the last 3 months, the largest tumor has shrunk again and I have achieved a 50% reduction. Just amazing! And on Saturday I will be celebrating 3 years since my diagnosis. That too, is unbelievable!
Had some great fun with my Mom and aunts a few weeks back. We went to the Better CT show in Rocky Hill with Scott Haney and Kara. This is the third time I've gone. Very entertaining although Scott had a very rushed start to his day and did seem a bit crabby. Anyway, tickets are free and you can sign up to attend on their website. It's neat to see the behind the scene workings of the studio. We then had lunch at the Tea Roses Tea Room in Cromwell. Such a neat place where you can pick out your own teacup. We had the afternoon tea which is served on a tiered stand and had the most tasty finger sandwiches, scones with lemon curd, preserves and double cream and tasty little desserts. All homemade food, great karma, and even better company! Thanks for a great day family!
Ralph and I also did a long w/e in DC where he has never been. And I haven't been there in years. We drove which went surprisingly well with the worst of the traffic right here in southern CT! Jared took the train down and spent the w/e too. It was chilly and one night there was about a half inch of snow that was gone by the morning. My kind of snow! We sure got to see and do a lot. The cherry blossoms were magnificent and there were lots of other Spring flowers to enjoy as well. We loved the Newseum, spent an entire day there. Also went to the National Geographic Museum and saw some great photos of behind the scenes at the White House of several past Presidents and their families. I walked til I dropped but loved every minute.
As I celebrate this 3rd year, I want to thank all of you who have helped me along this journey. I cherish your kindness and love. To be here and continue to experience all that I am grateful for is truly a gift!
To Spring, to hope, to life, to each of you!
Sunday, February 27, 2011
Stable cat scan and normal brain are the big news at 600 Arbutus. I know some of you want to debate the normal brain....go ahead, bring it on! Otherwise the only change to report was my white count was lower than it's been. Any lower and I would have to come off the drug until it recovers. Hopefully it will be fine by the next visit.
Florida was sunny and warm, just perfect really. I flew Jet Blue and the extra leg room made all the difference. That and having no one sitting in the two adjacent seats both down and back was another plus. Visiting with Rusty is always fun. He remembers family history that I had no clue about. I don't think he's pulling my leg, but you never know.... And Happy 20th Anniversary to he and Sue! Since we returned home they have become grandparents for the first time. Congratulations everyone!
Thank you to Liz and Brian for the invite to share their beautiful timeshare in Palm Beach Shores. We had quite the agenda but unfortunately Exit 105 was under the weather for a couple of days and we didn't get to visit everyone on our list. Hopefully there will be a next time.
Ralph and I and his buddy Greg and girlfriend, Jamie, took a road trip to Magic Wings, the butterfly farm in MA. Since my sister Sue has taken her kids I've always wanted to go and experience it firsthand. What a fun thing to do. Along with all the beautiful butterflies, there were hummingbirds, miniature quails, and other creatures amongst a tropical forest. This one is for all ages!
Thank you everyone for your ongoing love and support. It's a wonderful thing!
Lots of love,
Friday, February 4, 2011
It's time to get the hell out of Dodge!
I hope to leave for Florida tomorrow afternoon.
I'm so excited to be going someplace where there is no ice! I had a taste of it last Sunday when the temp hit 36 degrees and after Jared and I finished clearing the deck of nearly 2 feet of snow, I pulled up a beach chair and wallowed in the sunshine for awhile. The only thing missing were the cocktails! Yeah, right! So I poured myself a little pama and ginger ale. Who cared that it was only noon, not me!
My last scan was stable! I was hoping to decrease the frequency of the scans, (I go every 6 weeks) but when you're on a trial they are very strict about following protocol. I have been having more neuropathy. I have numbness and tingling and occasionally pain in my feet. I have ringing in my ears or pulsatile tinnitus. Along with the ringing I often hear my heartbeat. This can sometimes be related to a vascular problem unrelated to the cancer so I will have a brain MRI/MRA after I return from FL. I also have hypersensitivity of the skin over my trunk and legs which I had when I was on the last chemo but it had resolved after it was stopped. We don't know for sure if it is the trial drug causing all these symptoms, as they have not been reported by others. Pfizer, who is sponsoring the trial, has asked the FDA for an expedited review which means that the drug, crizotinib could be available for people who have the alk rearrangement by this summer. That's really exciting!
Great news for Jared. He got the full-time permanent position where he's been temping for Ipsos, a marketing research company in Norwalk. He's left ESPN and has a more permanent home now in Norwalk with his college bud, Victor, who also works for the same company. Way to go Jared!
Ground Hog's Day was Ralph's 57th Birthday. Happy Birthday Ralphie! Wish you didn't have to work so hard! It's been a tough winter with all the snow and ice and some very long days and nights.
But remember, S
pring is only 44 days away!
Wanted to put in a plug that Dr. Oz is doing a show on lung cancer in non-smoking younger women on Thursday, February 10th. One of the women interviewed for the show, Linnea, was one of the first people to enroll in the trial of the same drug I am taking. Glad lung cancer is getting some much needed press.
Here's to hoping you are all well and warm.
Wednesday, December 29, 2010
As they say, better late than never: Merry Christmas and Happy New Year Everyone! Hope your holidays were full of family, friends, fun and flair! Ours certainly was and we're looking forward to spending NYE with a fun-filled crowd. How late I'll be up, I'm not sure, but it's all about intention, right?
Shortly after Thanksgiving I got very sick with a wicked sore throat and sinus stuff, spiked a temp and ended up on antibiotics. Just when I thought I was getting better, I crashed again for another 5 days. I have not had a cold since my diagnosis, plenty of side effects and other events, but this certainly kicked my butt. I think it may have been related to my vitamin D deficiency which we found in October. I had not been taking my calcium/vitamin D since chemo days and my calcium has been trending down, so the dietitian suggested drawing a vitamin D level so we could figure out what dose I would need. It was very very low and I am now on a prescription supplement 1 x week. Not sure if it's the Crizotinib that has caused the deficiency or the previous treatment or a combination of factors. I do have to avoid the sun while on this drug. I last had my level checked when I was diagnosed and it was normal then. Vitamin D has been in the news a lot and there is research that low levels do affect our immune system as well as other things...so maybe it did contribute in some way to my getting so sick. Hopefully the supplement will correct the problem because I must admit, I'm a little paranoid about getting sick again.
Otherwise, I am feeling pretty good and will be due for a scan next week. I've been on the trial 6 and a 1/2 months already. WOW! I do have more fatigue and neuropathy but I'm not complaining, I'm here. The visual side effects have subsided quite a bit, but when they do occur, I enjoy them. I read that scientists do not know what the role of alk is in humans (my trial drug is an alk inhibitor) but in mice, it is involved in eye development so maybe one possible reason the drug causes visual changes. The swelling in my ankles is a little better but I seem to have more in my lower legs.
And that's enough about me! Ralph is very busy working 6 days a week. Jared was home for Christmas week and although he worked at ESPN a few days, it was so nice to have him around. When he comes home on the weekends, it's to work ESPN so our time together is short. His temporary position at the marketing research firm in Norwalk has been extended until the end of January and he recently interviewed for a new permanent position. Hopefully that will work out for him as he does enjoy what he's doing.
Shirley and Mike are in Austria and will be spending NYE with the 700,000 people who visit Vienna to ring in the New Year. Sounds like fun! The Denker children had a marvelous Christmas and headed to northern Vermont to spend some time with friends. And I will be heading to Florida for several days in February with Liz and Brian who have so kindly extended an invitation not only to me but Exit 105 as well. I have not felt up to traveling far from home for many reasons so this will be a first. And while there, I will get to visit with my brother who I have not seen in 4 years.
I wish each and everyone of you a happy and healthy New Year. Thank you for your love, encouragement and support. My life is better for it and I am grateful.
Monday, November, 29, 2010
Happy Thanksgiving and a quick update for you:
I'm feeling well and can't believe the difference between last year at this time and now.
This drug is my miracle.
I had another scan that showed further slight reduction in the largest tumor with everything else stable. With the colder weather, I've started to wheeze a bit and just started back on the nebulizer. I'm sure it will improve but boy that Albuterol really does give you the shakes! Not a time to handle knives if you know what I mean!
November is lung cancer awareness month and while I'm a little late getting this out, it's never too late to bring it to the attention of our legislators. One of the people I've met online who has been on the same drug as I, posted an excellent letter from the Huffington Post written by a man whose wife was diagnosed out of the blue with lung cancer. In the letter he talks about the lack of funding for lung cancer research and lists a website sponsored by the Lung Cancer Alliance where you can click on and sign a petition for our legislators who will be addressing this issue shortly.
We spent Thanksgiving with the Streeto's and had a great
day. Every year my mother-in-law, Joyce, serves the best ever homemade
manicotti as the first course. Love those Italian traditions!!! Any day with family is special, but Thanksgiving is my favorite by far.
Sending you all lots of love,
Wednesday, October 27, 2010
Just wanted to put a plug in for Kevin Lembo, our Health Care Advocate, who is running for State Comptroller. It was Kevin and his staff along with the Attorney General's staff, who helped me to file an appeal when my insurance carrier denied Avastin. With their guidance and expertise, the denial was overturned and I was able to get the drug. I volunteered to help with Kevin's campaign and was asked if I would tell my story. It was videotaped for his website and you can check it out at: Kevinlembo.com.
He's got my vote, I hope he'll have yours too!
Thursday, October 14, 2010
Who's Still Here?????
Well, it happened, I celebrated another birthday!!! The big 55, the double nickel! Exit 105, Rosie and Dennis, squeezed in a visit and showered me with all kinds of birthday treasures. Thanks kids! And on Saturday it will be 2 and 1/2 years since I was diagnosed. Yes, in my world, everyday is a milestone, but this is truly amazing. I am so grateful.
My latest scan showed "further improvement" and tomorrow when I see the doctor, I will get more details. I am feeling pretty good, still have the same side effects-fatigue, metallic taste, cankles. The acupuncture definitely helps with the swelling. Thank you Susan! No new changes and I continue on the trial taking my drug twice a day.
I downloaded a bunch of pictures from the last month's activities. The Vineyard is always such a great time. While we've been vacationing there for 35 years, we've never done the Cape Pogue Lighthouse tour so we made sure we did. It was as special as the rest of the island.
There was an international film festival wrapping up when we arrived on the Vineyard. We took in the last movie, Soul Kitchen, a German film that was a laugh out loud movie about running a restaurant. Great characters, great acting! I usually find it difficult to watch foreign films as I am so busy reading the subtitles that I feel like I miss the show, but this was easy to follow.
We also attended a free concert in honor of one of the dj's on the island who has been working at MVY for 25 years. Many local musicians played including Kate, Ben, and Livingston Taylor. I know James has a great sense of humor, well, it's genetic, they were all very funny in addition to singing some great music.
And our dinner at The Beach Plum was awesome. President Obama had dinner there when he was on vacation this summer so we got some inside scoop from the staff. They had 20 minutes notice that he would be coming. There were 2 secret service that stayed in the kitchen the whole time, one of whom is a chef and he watched the President's food prepared from start to finish. No, he did not taste it. Can you imagine the pressure the staff must have felt! They said he was very gracious and praised all the staff. Years ago we started sending post-it notes to the staff after each course. We always thanked them but more often then not, there was some witty comment. This year we had a new theme: Top Ten Reasons to Eat at The Beach Plum. My favorite was, Obama ate here and he's still alive....
Ralph and I went to Vermont on Sunday with thousands of others looking to take in the fall colors. It was a beautiful day, but the color just wasn't your usual Vermont scene. There wasn't much red or orange, lots of yellow. We were in southern Vermont, so maybe it was more colorful further north. And this week, the color here has been spectacular. Love it!
Ralph has returned to work and I do miss hanging out with him. It's been a great time. Jared started working for a research marketing firm in Norwalk. It's a 3 month position and he's staying in Norwalk with his bud, Victor, who also works at the same place. He seems to be enjoying it. He's still doing ESPN on the weekends so he's home Friday and Saturday but with long hours there, we don't get to see him too much. Go for it Jared!!
So that's the scoop from 600 Arbutus. Thank you for the birthday wishes!!!
Love you all,
Wednesday, September 8, 2010
Latest scan shows the largest tumor has shrunk a little more and everything else is stable!!! Yippeee!!! My cough is rare and I still have days I'm very tired but overall I'm doing well. I've been told the swelling in my legs and feet may get worse with time. Whatever, it's minor compared to side effects from chemo. The nausea is controlled with meds but I do have a metallic taste that's pretty much always there. Pineapple seems to be helping with that, but we'll see over time if it continues to work.
I did get to speak with Dr. Alice Shaw, the principal investigator for the trials since they started at MGH in Boston 3 years ago. She told me she had 3 people who dropped their heart rates and BPs after starting the drug. There seems to be a connection with some BP medications but not always. They're still learning everyday. As long as I don't become more symptomatic from it, we're not changing anything.
Jared was best man for his friend Matt a couple of weeks ago. It was a beautiful day and an emotional one too. Watching Jared and Matt standing together in front of the church gave me chills. Another special life event I was here to see!!! And Ralph didn't let us down on the dance floor....just watched some video that was very entertaining.
Speaking of the Ralph, he goes back to work the end of the month. We head to the Vineyard for one last getaway before he returns. As much as it sucked that he was laid off, I enjoyed our time together. I'm really going to miss our day tripping and hanging out.
Exit 105 made it up for a long w/e. Her girlfriend Allison who was visiting from Fla was able to join us as did When, the other exit 105, Rosie's boyfriend. When has put his savvy technical skills to use and connected Rosie and I so we can play Words with Friends and Scrabble. We have been pretty serious about Scrabble since nursing school and have spent many years in near cat fights over her cheating, i.e., turning letters over to make blanks at her convenience!!! I'm delighted to tell everyone, I've been kicking her ass!!! Such fun!
While they were here, we attended a farm dinner in Durham which was a very
cool dining experience. Tables with white linens and crystal glasses were set up outside under the stars. All the food and beverages were organic and fresh that day. After noshing on appetizers and downing Heirloom Tomato Bloody Mary's or Cantaloupe Bellinis, we sat down to what must have been a 10 course meal, each paired with a different wine. I would go again in a heartbeat. Some of the money from the event goes to support local farmers. The weather was perfect and the moon was half full. Met some really fun people including 2 sistas, one of whom lives in Colchester and has kids the same age as my Sue's kids. While she had not met the Denker clan, she knew exactly who Mike was when I described him as the guy picking up the kids after school wearing a UPS uniform! Go Brown!
Thanks for all the love!!!
Monday, July 26, 2010
I have great news to share with everyone: The largest tumor in my right lung has shrunk a centimeter, maybe a little more. The other nodules look less prominent. But more importantly, I am feeling better
for the first time in a long time. Hurray!!!!
I have posted some pictures of our most recent adventures including a road trip with the Denkers to Carlo's Bakery in Hoboken, Block Island, Jared's birthday, our Jersey Shore trip, the sunflower festival in Griswold and Stonington, a great nearby get-away that reminds me of Vineyard Haven.
And the awesome weather has returned along with a full moon tonight---So much to celebrate!!!
Sunday July 18, 2010
Good morning my people,
This week I will have my first cat scan since starting 1066. It'll be just about 6 weeks so I'm anxious to see what's up. Many times scans are not done for 2 months so if there is not much change it won't be surprising, but I certainly am coughing much less and I do feel better overall. Chemo takes a toll on the body and it can take months to recover from those effects so my feeling better may also be related to being off chemo for five months.
The nausea is under control. I was hoping to get off the anti-nausea meds but haven't been able to. They have their own side effects that have to be managed. While we were on Block Island, I did experience my first visual changes. Very bizarre and at the same time, kind of cool. It happened after sunset. I began seeing what I call auras around objects. It's hard to describe but I'll try. Objects have trails which are more prominent when I move my head. Ralph and I were sitting under the stars when this happened and I described it as my own personal light show. I learned from another woman who is also on the drug and writes a blog that it does have a name, palinopsia. I am not as shocked by it when it happens now. As one friend said, "Embrace them, they're
your friends." So I do.
The most recent side effect I've experienced, again listed as a possibility, is cankles, you know, swelling of my ankles and calfs. This started a couple of weeks ago and got progressively worse so I had an ultrasound to rule out blood clots in the legs. Thankfully it was negative. I did the support stocking thing (love them especially in this heat!) but what really made a difference was acupuncture. In less than 48 hours it was all gone. But after a week, it's starting up again, not as much as before, so I am trying to get in for another acupuncture appointment ASAP.
A few other changes have occurred too. I no longer need my BP medication. And my heart rate has also slowed way down. We're still waiting to hear if this, too, is a reported effect from the drug.
But despite all the above, Ralph and I have been able to get around. We're rediscovering New Haven after my visits to Smilow and have visited the infamous Claire's Restaurant (where the Lithuanian coffee cake is the best I've ever had!) and Atticus Bookstore. When I was in junior high school, Shirley and our friend Kathy used to take the bus from the Guilford Green to New Haven and hang out at Malley's, Macy's, the mall and upper Chapel Street. What fun we had being on our own in the "big" city. Ralph and I finally made our way to the Yale Art Museum, a place that's been on the fun things to do list for many years. We'll definitely go back.
We spent the holiday w/e in NJ. Exit 105, arranged for us to stay at a place called Mary's Place by the Sea, a B & B for women with cancer. It sits right on the water in Ocean Grove and the people who work there are very special. They have created a peaceful, healing environment and offer massage, reiki, yoga, guided imagery and other services to help not only women but their families who are affected by cancer. There is no charge for their services. Incredible people who have created a perfect respite. They are in the process of building a 30 room B & B as their are so many women diagnosed with cancer. It was amazing. You can check out their website at marysplacebythe sea.org.
Jared is great. Lifeguarding, mentoring for the YMCA, working the packy, all while still looking for the real job. He is now into rock climbing. Talk about living in the moment, his pictures blow my mind. I've suggested stamp collecting but he just laughs. His best buddy from growing up, Matt, is getting married in August and Jar is the best man. Matt is the young man in uniform who graduated UCONN with Jared (there are pics on the website of them together.) Another one of life's special moments that I'll get to celebrate and cherish. Just as I do all of you!
Keep it cool.
I'll let you know about the scan and post some new pics too.
Sunday June 20, 2010
Happy Father's Day to all you Dads!! We love you!!!
It's been a very busy month. I did go to Yale and to make a very complicated situation brief, I did have to have another biopsy. This time they did it via a bronchoscopy-going through my mouth into the trachea and on into my lung. Fortunately the doc was able to get adequate tissue which once again tested positive for the alk fusion mutation--the tumor has to test positive for this to enroll in the trial. Step one done.
I then had a bone scan, cat scan of my chest, abdomen and pelvis, brain MRI, eye exam with a Yale doctor, and lab work. And of course I showed up for 1 of the tests and was told I was there on the wrong day. This happened not once but twice!! Thankfully, the 2nd time they were able to get me in because there was a cancellation. Anyway, all this occurred over a week's time and in the midst of it, I needed a root canal for a very painful tooth. My dentist was away and I did not like the covering guy who....well, let's just say, it took 4 visits and an antibiotic before things got better. Once my dentist returned, he completed the work. He called me that night to see how I was feeling and told me it was one of the more challenging root canals he's done in the 20+ years he's been practicing. All I can say is thank God the pain has gone!
I must admit "starting over" at Yale with new staff, having the biopsy, all the testing which was done at facilities I haven't been to before and by staff I don't know, new rules and procedures and then throw in a root canal, really did me in. I was exhausted and it has taken me a couple of weeks to recover from it all. And I never would have been able to do it without Ralph by my side the whole way. Thank you Ralph!!! I know how draining this was for you too.
But the good news--I started the trial drug Friday June 11th. There was an annual oncology conference 2 weeks ago in Chicago and there was a lot of good press about this drug on the evening news. As Dr. Alice Shaw (primary investigator for the original trial at MGH) said, if there's such a thing as luck in advanced lung cancer, this drug is it. I recently learned that Pfizer had this drug on the shelf already--it was being studied in another type of cancer--when a Japanese doctor discovered the mutation in one of his male lung cancer patients. Usually it takes years for the drugs to be developed. So I am very thankful that this drug is available to me.
It's called crizotinib or prior to it getting it's generic name, 1066. It's oral and I take 3 pills twice a day. I do have nausea which is not uncommon, but for some reason it seems to be worse with the morning dose. Unfortunately, I am not suppose to eat 1 hour before or 2 hours after taking it, so I've been experimenting with anti-nausea meds, acupuncture, ginger and anything else I know. I'm hoping it gets better with time. Once the 2 hours is over and I eat saltines, it does subside some. The drug can cause visual changes in 40% of people. I just hope it's minimal as somehow vision changes along with my imbalance/dizziness, (still there, maybe a little better), sounds like a disaster in the works!
The staff at Yale have been great. They new center is beautiful. I've run into some nurses I've known from years past and it's always nice to see a familiar face. Two of the new nurses I met, told me they heard me speak at the oncology nursing conference last year when I introduced Attorney General Blumenthal. It's nice to know people remembered the moment.
Despite all that that has gone on in the last 3 weeks, we have squeezed in some fun. The Streetos and the Denkers went to a Red Sox game a few weeks back. We spent the night in Boston and were close enough that we could walk to the stadium. It was my first Red Sox game and it was great fun. Check out the pictures.
I've been enjoying the garden and the birds. I was able to do a lot more in the garden than I thought I could. I sat on a bucket and very slowly got much of the weeding done. Ralph helped me finish the weeding and edged the beds. He also moved a couple of plants that I couldn't. I've enjoyed the peonies and hydrangea which seemed to be doing much better this year than in previous years. We've seen a couple of bluebirds over the last 2 weeks that are just beautiful.
I love it when they land on the deck posts and hang out for a while. And the fireflies are also back, very cool.
So Happy Summer Everyone--hope you get to wallow in the light of the longest day of the year tomorrow. We have spent many first days of summer on the beach at Menemsha and while I am not there this year, we do plan to be on the beach at Block Island tomorrow for the sunset. AHHHHHHHHHHHH!!!!!
Greetings from 600 Arbutus!
Ralph and I spent a week in the Berkshires and had great weather. It was so pretty and peaceful. Well, it was until Exit 105 (Rosie) showed up with her boyfriend, Dennis, aka "When"....long story, but enough about them! We visited the Norman Rockwell Museum which had a "Behind the Scenes" exhibit that was fascinating. He accomplished so much in his lifetime. In my next life, I am going to request some form of artistic talent. To be able to draw something other than stick figures or sing Somewhere Over the Rainbow without being told to "shut up" would be so cool.
Ralph and I also visited The Mount, home of Edith Wharton, a famous author and gardener extraordinaire. She wrote both fiction and nonfiction including the first interior design book that is still used today. Who knew!! Somehow I got through high school, college and graduate school and never knew who she was or somehow missed that class! I was feeling really bad (not really) about that until the young woman in the gift shop told me she had 2 english degrees and never read her books until she started working at The Mount. Now she was obsessed with her. We did the tour of her home and had lunch on the terrace overlooking the most beautiful garden I had ever seen. In one section there was a dolphin fountain in a large oblong pool surrounded by gardens of tulips all in bloom. It was so beautiful that when I first laid eyes on it, I gasped with awe and delight. No one else was there and we walked the paths and made believe it was our own. What a treat!
We also had the pleasure of meeting When's parents who returned to Lenox for the summer while we were there. They treated us to a wonderful dinner (Ralph says the best steak he's ever had) at Chez Nu in Lee, and the following day, brunch at another great restaurant, in Great Barrington. We spent a few afternoons hanging out on the front porch of the Red Lion, sipping wine and chil-laxing.
I continue to feel good off chemo.
The dizziness and imbalance are a little
I have found out that the clinical trial opened at Yale in Jan which is where I will pursue it. For many reasons, it will make life easier and when I was first diagnosed I met with the doc who is the primary investigator for the trial there. We are still waiting to hear whether or not my mutation results from Boston can be used or whether I have to have another biopsy. Waiting for an answer is very frustrating, but hopefully I will know something by next week.
Today, Ralph and I will tackle the flower garden. He always has edged the garden bed but now that I am physically challenged I will have to supervise him as he doesn't know a flower from a weed!
Thank you all for your heartfelt messages, cards, and prayers. I so appreciate all the love that comes our way!! Enjoy your day!!
Friday April 16, 2010
Just a shout out:
TWO YEARS, STILL HERE!!!!!!!!!
Hot Damn, Holy Cow, Party On!
And party we did at the beach house yesterday, courtesy of Pat Grodski and many wonderful hospice nurses and volunteers-some of us go back 30 years!!! Thank you so much for a very joyful day--great friends, great stories, great food, great weather and a spectacular view!! What more medicine do I need?????
From one very grateful heart,
Love and light,
Tuesday April 13, 2010
Good evening family and friends!
I had my cat scan last week and everything looks stable-hurray! Unfortunately the imbalance and dizziness has not improved and we held chemo again. It's been 5 weeks since my last treatment and I do feel better. All those annoying little side effects have subsided. I spoke with DFCI and then had a visit with them yesterday. The doctor there thinks the Alimta may be causing my symptoms and has recommended I stop it. He suggested a treatment break for a couple of months but I am not comfortable going that long without treatment so we settled on a month off and then I will begin the process of enrolling in the study. I'll keep you posted.
Ralph starts his layoff after this week. We are going to try and get away the end of the month and had hopes of traveling to California and beyond but that was before I got dizzy so now we will hang out somewhere in New England. We're both looking forward to a break. It's been a long winter!
My best to all of you!
Saturday, March 27, 2010
Happy Spring Everyone!
Right after my last entry, I woke up on Saturday morning with dizziness and imbalance. I kept waiting for it to go away but it didn't and by Monday, I thought for sure the cancer had spread to my brain. And why wouldn't it, the longer I live with this disease, the greater the chance it could happen. It was such a stressful 3 days which is how long we had to wait before I had a brain MRI done. What a relief to hear it was okay. So, why the dizziness? The docs thought it could be a viral inner ear infection that would get better in a week or so and it did seem to get a little better but then I was due for chemo and with that, the dizziness, now accompanied with nausea, came back big time. I was down for the count for almost a week. I saw an ENT last week and had an ENG, a special balance test, which showed that I have a vestibular weakness on the left, an inner ear problem affecting my balance. No one knows why it happens and it is probably not related to my chemo. It can take months to improve (Yikes!)and I have special exercises to do twice a day. I'm hoping for a speedy recovery. in the meantime, my oncologist thought I should take a break from chemo and I will see him Monday to talk about it further.
I'm already enjoying knowing I won't have chemo on Monday! I am due for another scan in a couple of weeks so we'll see what is going on. If it weren't for the imbalance, I have felt pretty good these last few days.
Ralph and Jared are great. Jared has been to Catalina Island and back since I last wrote. His job at ESPN ends next week and he has been sending out resumes to everyone under the sun. He continues to lifeguard at the Y but would love to find a real full-time job.
I finally added some new (old) pics to photobook #3. We got a new computer last November and it has taken me some time to figure it out.
Hope everyone is enjoying Spring. What a welcome sight all the crocuses, daffodils, and now forsynthia are. Many of the tree buds are big and red and the grass is getting green. I love it!
And all of you too!!
February 21, 2010
For weeks now I have told myself to make some time and write a note. I won't remember all the adventures to share if too much time goes by! My last scan was
1 and 1/2 weeks ago and all is stable! So, I continue on the Alimta every three weeks and I do feel pretty good for the most part. Days 4-7 following treatment can be pretty discouraging and don't pass quick enough for me but once they do, I cherish every moment.
Christmas with the families was memorable. On Christmas Eve, all the Streetos squeezed into Aunt Mary's small apartment which overlooks the East Haven Green and Main Street. Within a short time, it got pretty hot inside and before long the front door was wide open--anyone driving by could easily peer in and share in the festivities! It was quite comical! On the way home we squeezed in a visit at Sal and Sophia's--Jared's babysitter from way back. And Christmas at the Denker's wouldn't be a holiday without M & M peanuts! But there was a catch, you couldn't eat one unless you put a piece in the 500 M & M jigsaw puzzle we worked on. It was fun in the beginning, but when the bellyaching started...
We celebrated NYE at home with "Ralph Gone Wild" and a few friends. The following day, Liz and I got to visit with a blast from the past, Martha, who was our supervisor many years ago at Middlesex Hospital. She was visiting from Colorado and we spent an afternoon together when who should arrive, but Rosie, exit 105! So the holidays were jammed full and lots of fun!
Jared loved his trip to Egypt and Jordan! His pictures are awesome and if you have time, check them out at: http://gallery.me.com/jared.streeto/100046 . When I asked him if he ever felt unsafe, he said the only time was when they arrived in Cairo and were being driven to the hostel. There are no road rules and one can literally reach out the window and smack the person in the next car! Almost like Nascar! He and Carter saw and did so so much in 2 weeks including Giza, Luxor, Valley of the Kings, snorkeling in Dahab and Nuweiba in the Red Sea, Petra, camping in the desert at Wadi Rum, and a mud bath at the Dead Sea. So glad he got to go!
I hope each and everyone of you are well and enjoying the last weeks of winter. The days are getting longer!! What a surprise it was when I saw robins, not once, but on three different occasions in my back yard during January!! For many years, I have recorded the date of my first robin sighting and this is the earliest I have ever seen them. What a treat! Not for you Chester!
Love you all,
Thursday December 24, 2009
Hello and Merry Christmas to all of you!!
Ralph and I went to DFCI 2 weeks ago. My cat scan was read here as slight progression of the largest tumor with everything else stable. Dr. Marcoux felt the scan looked stable compared to when I started the Alimta in August and he recommended I continue on the Alimta as it has been proven to delay the time to progression of disease. The good news was my special test confirmed I have the mutation and I will be eligible for the trial they have when....this is the part that was a little disappointing.... the disease increases by 20% from when I started the Alimta; there is new disease; my symptoms get worse; or I can not tolerate the current treatment. All I heard was I have to be sicker. It sucks and unfortunately I have no control over it so I am getting better at not wasting my time thinking about it.
I had chemo last week and I did fine til about the 5th day after when I crash and this time it was in a big way--I was dealing with sinus issues and nose bleeds which I'm sure were made worse by the colder weather and I was feeling very discouraged. Denice, my reiki master and reflexologist called me out of the blue on Sunday, heard how terrible I sounded and came over and did her magic. She has an incredible healing touch and I am so grateful she does. I have felt much better since then.
We will be spending Xmas Eve with the Streeto's and Xmas day with Sue and family. I have a couple of reindeer games planned which should result in some good pictures. Stay tuned!
I wish you all a joyful and peaceful Xmas.
Lots of Love,
Friday, November 20th
Happy Thanksgiving Everyone! I lose all track of time and didn't realize til the other day that Thanksgiving is next week already and that it's been a long time since I posted any news. We'll be at my sister Sue's for Thanksgiving as long as everyone is healthy here and there. Lot of "flu" going around and I am careful to stay far away from anyone not feeling well. I myself am feeling okay, definitely better on this chemo than the Avastin. I rarely have headaches and not nearly as much body and joint pain although that can change day to day. I decided to try aquacize thinking it would be much easier on my joints and the first class went well. The second class was great too but by the next day I could barely walk and that lasted nearly a week. I underestimated the impact of the water resistance on my knees. I sound like a popcorn machine when I do the stairs. I still do get tired and cough but that's old news and unchanged. I will be due for another cat scan in early December. I had my 6th cycle of Alimta on Monday.
DFCI was doing some additional testing on my initial biopsy for a newly discovered mutation (tends to be found in nonsmokers, males >females and in adenocarcinoma: which makes me 2 out of 3-not bad!). My initial screening was postive. The sample was then sent to MGH for confirmation, and I am still waiting to hear the final outcome. If it is confirmed, I would be eligible for a DFCI clinical trial with an oral agent that has seen very promising responses. And that's pretty exciting news for lung cancer. Sounds like they are trying to determine if there was enough tissue to do the test.
Our trip to Vermont was very restful. It was colder there and it did snow, the mountain tops were covered. Our friends, Kathy and Pete joined us later in the week and we did some touring of areas in northern VT that we hadn't been to before. Spent the afternoon at Shelburne Farms which is a working farm that sits on Lake Champlain. What a spectacular site! There was great food all week which was a nice surprise. Lots of Vermont made wine, cheese, breads with organic farm to table offered, much more so than in CT. Ralph and I had been referred to the "Hen in the Wood" in Waterbury (thank you to Carter's parents). This is located in a beautifully renovated old mill and while we were there, people were finishing up a photo shoot for Bon Appetit. The restuarant had received an award for most romantic restaurant in the country. And it was. The food was great. We would definitley go back!
And speaking of photo shoots....back in the Spring, Rosie, Exit 105, had nominated me for an "Extraordinary Healer Award" sponsored by CURE, a great cancer educational magazine for patients and families. And while we didn't win the trip to San Anonio we did get a call a few weeks ago: CURE called to say that Rosie's nomination letter was 1 of 40 which would be published in a book coming out early next year. They also wanted to do a photo shoot of 20 of the nominees and their nominators and asked if we would be willing. Well, you don't ask us twice about a photo shoot! We met with a photographer at Greenwich Point Park 2 weeks ago on a Spring like day. It was great fun! There happened to be a road race going on, so there were lots of lookers and we're sure they thought we must be gay with all the posing that went on!
Ralph and Jared are doing well. Jared was the lifeguard one night when I was at aquacize. I tried to behave, but it was hard not to goof on him. I know I made you laugh a few times Jar! Jared is planning a trip to Eygpt in early Jan. Chester is great and overweight. I am trying to discourage him from snacks which he wants every 2 hours. Someone suggested I put his regular food in the snack bag and so far it seems to be working. He doesn't seem to be looking for snacks as often since it's not any different.
Happy Thanksgiving to all my people!! I am grateful for your frienship, love, prayers, and support. You make my days better, brighter, and happier.
Sunday, October 11, 2009
Hi everyone! A quick update for you: my cat scan showed stable disease with no new lesions. HURRAY!!!!!!!!!!! So I continue on Alimta every 3 weeks with scans after every 3rd dose.
Ralph and I are heading to Smuggler's Notch within the hour and will be there for the week. Our trip to the Vineyard was awesome with perfect weather, great friends, and plenty of rest and relaxation.
I was asked by Hartford Hospital's Integrative Medicine Department if I wouldn't mind being filmed having acupuncture as part of their Cancer Center overview. It will be on Channel 3, Tuesday, October 27th at 7:30 pm. I have no speaking part....and I don't even open my eyes...damn...
I'll post again when we return. Hope everyone is enjoying this beautiful day!
Saturday, September 12, 2009
Hello everyone! Meet Denice, my reflexologist and reiki master. She is amazing and I look forward to seeing her every week. Her presence alone makes you feel good, but then when she performs her healing art, it's the best ever. I did fine with the 2nd cycle of Alimta. I was able to get acupuncture during treatment and I had reflexology/reiki the next day. We also used a longer acting anti-nausea medication and cut back on the steroids. Monday I will have the 3rd treatment and then a scan at the end of the month. The chemo does make me tired and my symptoms haven't really changed so I'm anxious to see if the treatment is helping.
My quality of life is very good and I focus on what I can still do rather than what I can't. I have the best friends and family ever and we do a lot together. I spent a gorgeous day at a beautiful beach--East Beach in RI with my lifelong friend, Kathy last Friday. Our mothers were best friends and we spent a lot of time with each other's families. I remember playing tea party and imitating our mothers. No further comment.....
You may notice I'm wearing a boa in the picture above and that Denice is holding a rubber chicken decked out in party garb. My friend Liz invited me to the breast cancer fundraiser sponsored by Middlesex Hospital. It was held at the Riverhouse on the CT River in Haddam. What an event! I will try to post some of the pictures from it because the artwork that went into designing the bras that were auctioned off was simply amazing to see. We were in a beautiful room with a balcony overlooking the river. Before the auction started we were served pinktinis and lots of good food. Liz provided the pink boas to go with our pink inspired outfits. Check out our pocketbooks!! Most of the bras had a theme and were modeled by some pretty hot babes including Ms. CT. When the first model came out, I thought why didn't I bring Jared and his friends, they would have loved the show. Nearly all of the attendees were women with a few males scattered here and there who did a lot of the bidding and buying. Liz had to remind the guys that the women did not come with the bras they were buying! It was a sold-out event and a great success. The money will be used to assist patients who want to participate in the Integrative Therapy programs at Middlesex Hospital's Cancer Center. Congratulations to Christine, a breast cancer survivor and someone I had the privelge of taking care of, who organized the event.
Ralph and I will be celebrating our 25th wedding anniversary this month! I am so grateful to be here as I didn't think I would see it, let alone another birthday next month!!! Our friends, Barbara and Ed have invited us to the Vineyard the week of the 20th which will be great. I know everyone knows how much we love the Vineyard. We did spend a week of our honeymoon there and I am so excited to be able to go back again this September. If the weather is anything like its been this week, it will be perfect. September is a beautiful time of the year, especially there.
Ralph and I met Sue and Mike and the kids at the Middle Haddam fair last Sunday. I hadn't been to the fair there since Jared was very young. The kids had a ball as they all love the rides and when an adult was needed, Mike went on with them. That in itself made for some good laughs. I noticed a psychic was at one of the booths and decided my hair had grown enough that I didn't look like a cancer patient so I had her read my palm and cards. The first thing she told me was I was going to live a long life!!! Guess I don't look like I have stage IV lung cancer!! She really had no other enlightening news for me, but it was good for a laugh anyway! I did run into Linda, one of the hospice nurses I worked with years ago who said she just knew she was going to see me at the fair. Maybe I should have paid her the money for a psychic reading!!
And that's the news from 600 Arbutus. Oh wait, one more newsworthy item--Sue turned ffffforty!!! Happy Birthday Suey!!!
Love you all,
Thursday August 13, 2009
Hello gang! I had my cat scan 3 weeks ago and it did show the largest tumor had increased slightly again so I have stopped the Avastin and started on a new chemotherapy called Alimta. I had my first dose last week and I was down and out for several days. I had a lot of nausea which doesn't usually happen with this chemo. It may have been related to the steroids I have to take for 3 days with the treatment so we will make some adjustments in that for the next time. I have treatment every 3 weeks and go in between to have my blood counts checked. I am trying to coordinate having acupuncture or reflexology/reiki on the day I have chemo because it also helps with the side effects. I have been feeling fairly well with no real worsening symptoms. The Avastin did cause some chronic headaches for which I had seen a neurologist who started me on medication that has helped. Hopefully the headaches will subside permanently and I will be able to stop the medication soon. Dr. Marcoux from Boston has requested tissue from my original biopsy be sent for additional testing to see if I test positve for other mutations. If positive, I may be eligible for a clinical trial in the future.
Shirely, Sue, Emily and my friend Lisa went to see the Better CT show with Scott Haney and his sidekick Kara Sunderland. I have watched a lot of Scott over the past year and he is one of those people whose mere presence makes me laugh! The station is in a beautiful building in Rocky Hill. It was really cool to be part of the live show and see all the antics Scott pulls inbetween taping. Tickets are free and you can get them online.
Ralph and I caught up with his buddy Mike Cappezone a couple of weeks ago at a fundraiser which Mike and his buddies (AKA "In The Pocket") were playing at. I noticed this one young woman hanging out with her friends who were sitting in front of us. As I watched her, she was so familiar and I thought, that's Sara, Darla's daughter. Many of you may remember my childhood friend, Darla who died of breast cancer. I had not seen Sara in several years and here she was, all grown up into a beautiful young woman. I finally approached her and she recognized me. It was great to see her and catch up on life. She made my day!! Another one of those encounters that was meant to be.
And the Pan Mass Challenge was last weekend. I got to keep tabs on the ride on NECN.com which had some very moving footage. Team Kinetic Karma raised over $125,000 dollars for the cause! The picture above is from Jim, one of the bikers who did the longer 3 day ride from NY to Provincetown. Jim honors cancer survivors as well as those who have died from cancer by wearing their names on ribbons that he attaches to his fanny pack. Thank you Jim for adding me to your list!! You are all amazing people! Thank you for what you do!!
Ralph, Jared and Chester are all doing well. Jared started back at ESPN part-time evenings and loves it. He's still lifeguarding which will continue for a few more weeks. Chester doesn't let me out of his sight. He's so loving although a bit needy! Sister Sue has moved into her new home in Colchester which is just beautiful.
There are a couple of new pics at the end of photo album #2, not #3-check them out.
My best to all of you!
Friday July 10, 2009
Vacation was great and despite the weather you had here, we had some pretty nice beach days. It was good company, good food and a lot of laughs. Sure did need that. Rosie's birthday was July 3rd so I wanted to celebrate it while we were together. Jared had told me about a birthday party he attended which was a scavenger hunt at the local pubs so I pulled together a 3-pub scavenger hunt for the Ro. I wrote her a riddle for each one and she had to figure out what pub to go to and then I had left some props with each of the bartenders.
She then had to announce herself and the bartenders came up with different things she had to do to get her gifts. It was so funny, she loves to perform, be sure to check out the pictures.
On the ferry coming home, I noticed a group of bicyclists wearing shirts that said Team Kinetic Karma and when I inquired who they were, I was so excited to hear they ride to raise money for cancer research. They will be joining cyclists from 36 states and eight countries to ride in the 30th annual Pan-Massachusetts Challenge. The goal is to raise $34 million for cancer research and treatment at Dana-Farber Cancer Institute through the Jimmy Fund. I shared my story with them and thanked them (hugged them!) for what they do. Our meeting was meant to happen and definitely a highlight from vacation for me.
And now, for a story you won't believe! On Sunday the whole family gathered for a picnic at Shirley's house in Westerly. While sitting in the back yard which abuts a golf course, I got hit with a "rogue" golfball. It came out of nowhere and clocked me on the chin. Talk about being stunned. Jared did locate the golfer who came over and apologized profusely. The sucker bled so bad I had to go via ambulance to the hospital for stitches. It continued to bleed for some time after most likely because of the Avastin. Saw my dentist on Monday for
x-rays and he said I was one lucky person, there was no jaw fracture, loose or broken teeth. I'm just grateful it didn't hit any of the kids. But did I really have to take one for the team???!!!!!!
Hope all is well with everyone and that you're enjoying this crazy summer weather.
Thursday, June 11, 2009
I had my cat scan 2 weeks ago, the large tumor in my right lung and some of the smaller nodules in both lungs increased in size slightly. At first I thought I was going to stop the Avastin and go on chemo, but after much debate I have decided to stay on the Avastin until my next cat scan in 2 months. It's a tough call because sometimes there is no right answer and in this case either one was a reasonable thing to do. I have been feeling fairly well with no new changes which also makes the decision to change treatment more difficult. So once I felt I could live with my decision to stay on the Avastin (which I finally decided on yesterday), I am greatly relieved. I did end up having another MRI of my brain today because of new intermittent headaches. And thankfully it was normal. Unlike many of you who thought there was nothing there, they did find my brain!!
Ralph and I had a wonderful time on our road trip. The ferry to Nova Scotia does not run until June 1st, so we never made it there, but we had a great time exploring Portland Maine. I have to tell you it was like Spring all over again, their lilacs of which there are thousands were in full bloom. We stayed at the West Side Inn where Beth, the innkeeper spoils her guests with fabulous breakfasts and all the little extras that make you feel special. We planned 2 nights in Portland but enjoyed it so much, we stayed an extra night. What a great city with so much to do, visited their impressive art museum, took a boat trip to Peake's Island and spent the day on a deserted beach. What would Maine be without a visit to a lighthouse or 2 and that we did. Portland is 2nd to San Francisco in number of restaurants per capita. Many an award-winning chef has landed in Portland and the options for dining out are endless. Many of them use organic foods and meats from local farmers. I got to have fiddleheads for the first itme, they were great. Also, had a scallop and pasta dish where they roasted the pasta in the oven before adding it to the sauce, no boiling. That too, was excellent.
One of the highlights for me was Soakology (soakology.com for more info) where I enjoyed a cup of tea while I had a foot soak and massage. They offer a variety of soaks, massages, teas, lunch and desserts. I chose the Chinese herbal pain relieving soak as I had exacerbated my chronic foot pain from all the walking. There are overstuffed chairs elevated off the floor and huge ceramic pots with stones in them that are used for the foot soaks. Check out the pictures, if this was closer, I would be a regular. I walked out of there a new person with happy feet!
We stayed at the historical Newcastle Inn for 2 nights, near Damarscotta, a lovely town about an hour north of Portland that sits on the river with the same name. Our innkeeper, Julie, was another special lady who went above and beyond to ensure we had everything we needed. The place was spotless, the sheets were ironed(!) and she too, was a great cook. I enjoyed her dog, Dulce, a Belgian something or other, too. There was an awesome view of the river from the huge deck off the back of the inn where a mighty varigated copper beech tree amazed me. I had never seen a variagated one before and some of you may know that the copper beech tree is my all time favorite tree. What made it even more special was that Denice, my healer and reflexologist had just done a beautiful meditation about a tree that was very powerful for me. This tree had the same copper colored leaves but the edges were outlined in pink. They looked hand-painted. In the morning, I'd look out the window from my bed and there it was. There were so many moments like this on our trip and I am so grateful to have had everyone of them. Ahhhhhhh........
We then headed back to Portland where Ralph had booked a suite at the Hilton Garden overlooking Portland Harbor. The view from our 5th floor party room was magnificent. Many of you know my friend Liz who is from Portland . She came to visit her Mom over Memorial Day w/e and had told us about many of the places not to miss. We met up with her and hubby, Brian at a local pub, the Brian Boru, to enjoy authentic Irish music and toss back a Guinness or two. We enjoyed meeting Liz's sister and her Mom who joined us for the view from the suite, both of them saying they had never seen Portland look so beautiful as it did from there.
Both Ralph and I were amazed at how much we did on our trip. It was great to get away from "the cancer" even if it was just for a week. We were home a week and Ralph left for the annual Guilford Sailing Society trip to the Chesapeake Bay with buddies Pete and Greg, something he missed last year because of my new diagnosis. Unfortunately, it got off to a rough start because when he left I did not have my final cat scan results and we communicated over the phone about what was going on. He was torn about being away and I sure missed him. But with the support of the rest of my family and friends here, and his there, we got through it. I cried when he got home, something I didn't expect but now realize how much I cherish his love and support. Thank you Ralph!! Thank you everybody!
Got to see many of my Dad's family at a recent 50th wedding anniversary party for my Aunt MaryJane and Uncle Roger Roy. We always thought Dad's family was big, 11 kids, but Uncle Roger is one of 17 kids!!! The cousins did an outstanding job of honoring their parents. And getting to see the family is always a treat for me!!
Hortie Kabel, a RN hospice volunteer here at Middlesex for 25 years hosted a party at her home with some of the original staff and volunteers. This was my first nurse manager positon at the first inpatient based hospice in an acute care hospital in the state of which I was proud to be a part of the planning committee. Seeing old friends that I have not seen in many years made my day! Reminiscing is so good for the soul!! Especially the laughter that comes with it. They have always been a special group of people whom I am honored to have worked with. Thank you for making it happen Hortie!!
Just a few more notes or you won't be able to get anything done....
Jared continues on his job search while continuing to do temp and part time jobs. Lake clean-up has started for life guarding so he is busy with that. ESPN has called and it looks like they are rehiring in July. He also is very grateful to have gotten the names of several contacts for sports/media jobs through his friend Carter's parents who live in Jersey. Hopefully something will work out. Thank you for taking an interest!
Chester continues to be my new "best friend" and wherever I am, he is. One night, he slept with his paw on my cheek. We call him the Reiki kitty.
The Denker children are great. Emily is quite the slugger and had her first homerun last week. We've discovered Avery is an amazing hula hooper, honestly, I've never seen anything like it and she is only 4 years old. If I ever figure out how to post a video on here, I'll do it so you can enjoy the show. Kyle still thinks he should be playing for the Red Sox, he's the biggest kid on his team and has a heck of an arm. Hopefully the gang will be moving into their new house in a couple of weeks.
And tomorrow I leave for the Vineyard for 2 weeks. It's the best therapy ever!!
As always, I so appreciate your love and support.
Love you all,
Sunday May 10, 2009
Happy Mother's Day! Hope yours was special! Mine was very quiet and relaxing. It was one year ago today we were at Jared's graduation! Ralph and Jared and Chester gave me an iPod and Jared downloaded it with lots of music including meditations which has been great. On Friday, Jared and I and his friend Carter picked up Avery from preschool and took my Mom to Saddler's Ordinary in Marlborough for lunch. It was great and I am glad Jared was able to go. Happy Mother's Day Mom!! Having any of the Denker kids with us is always instant entertainment. I did get outside today and enjoyed the weather while watching Ralph wash windows and screens. There was a time when that was my job and I must admit one I do not miss. Thank you Ralph!!
Ralph and I went to Boston last Monday to see Dr. Marcoux. He reviewed the scans and agreed they looked stable. He thought the fluid around my heart might possibly be from the Gemzar, one of the drugs I got with the last 2 chemo treatments back in October/November. As long as I'm not symptomatic from it, we'll watch it on the cat scans. I have my next scan the end of May. He told me I reached a major milestone making it to the one year mark. Don't I know it! I had thought the Avastin would be through July, but he explained the year of maintenance started when I finished the chemo. So, if my disease remains stable and I have no major side effects from the Avastin, I will be able to remain on it through November. Most people have progression before the year is up and do have to go back on chemo but hey, I made it a year and no one was sure that would happen, so why not shoot for a year of Avastin!!
Emily Denker invited me to her school program in which the kids dressed up as famous people and read riddles they wrote and you had to guess who they were. She was Diana Ross!! Had the black Afro, headband, sequinned minidress and gogo boots. It was so much fun to see her and the others in action. I'll try to post some pics.
Got to have lunch with friends, Sofia (Jared's babysitter for many years) and Ginny. We went to Harmony Cafe in Middletown where they are known for their desserts, especially some super duper chocolate cake whcih has been promoted by Scott Haney. It was great. I then had Ginny drive us through Lyman's Orchards to check out all the blossoming fruit trees. They were beautiful. Thanks Sofia and Ginny!
Barbie and I attended a Reiki I class offererd by Denice, my reflexologist and reiki master. She had encouraged me to take the class so I can do reiki on myself which I now do everyday. It's been very cool to do and is definitely relaxing. Denice is a healer and has so much positve energy, she's a joy to be around. I do still go for acupunture which I also love. It definitely boosts my energy.
The other day I walked to where I lift the lilacs every year and got me a bunch. Many of them have been cut down, but there were more than enough to bring a few home. I can't tell you how much I enjoyed that moment!!
Ralph starts his annual 6 week layoff next week and we plan to hop in the car and do a road trip. We talked about going to Nova Scotia since I've never been there and hear its coast is spectacular. Not sure how I'll manage all the time in the car, but I game to try anything. And then in June we'll head to the Vineyard for 2 weeks.
Congratulations to Mike and Shirley! Remember Theresa and Nick, the couple who married last year, (the wedding where I got dropped off at the wrong hotel...) Theresa had baby boy Braydon last week. Can't wait to meet him. And Happy Birthday to Shirley's kids, Ryan and Chris, man, you guys are getting old!!!
My best to everyone!
Saturday, April 18, 2009
ONE YEAR, STILL HERE!!!!!!!!! Ralph, Jared and I broke out the champagne Thursday evening to celebrate-- still kicking 1 year later!! And to toast all of you who have been so helpful to us over this past year!! Our hearts are full of love and appreciation! Jared and I danced to Diana Ross and the Supremes. Why Diana Ross you ask? Only because Ralph was practicing his bass to Stoned Love and it's a great song to dance to. Way to rock Jared! But let me tell you about the champagne. I picked it up the week before, an expensive bottle, and Jake, the young handsome lad who checked me out asked if I knew it was expensive. I told him I did and that it was for a special occasion. He politley asked if he could inquire as to what the occasion was and when I told him, he slid the bottle towards me and said, "Here, this is on me. I have a bottle of this home and I will bring it in and replace this one. I'm so touched by your story and I want to do this for you." I was so taken with his kindness that I started to cry. So, cheers to Jake who made a very special occasion even sweeter!
Happy Spring! Time to break out the sandals and shorts! Lots going on here at 600 Arbutus Street. Joe the Painter has spritzed up our bedroom and bathroom with some new color and we finally had the carpet replaced in the bedroom. You know it's time to change the carpet when you start tripping over the ripples in it! It looks great and feels like I'm sleeping in a new place. Ralph finally planted the beautiful lilac bush Ruth and Shirley brought me last Spring. It looks very healthy and happy. Thank you again ladies!
Two weeks ago my colleagues from the Central CT Oncology Nursing Society asked me if I would like to introduce Attorney General Blumenthal at the CT 2nd Annual Oncology Nursing symposium which was held at the Cheverolet Theatre in Wallingford. After he did the opening remarks, I would then have a few minutes to share my experience about the Avastin appeal. I gladly accepted the honor and welcomed the opportunity to see my colleagues who have sent me many well wishes this past year. I have known many of them since Jared was a toddler. And even though I didn't get to speak to everyone, it was so nice to be in their presence. These are nurses who have taught me so much over the years and whom I respect and admire. I was expecting the AG to discuss his role in current health care issues, we know they are numerous. And I suddenly realized he was talking about me and how I did not give up when the insurance company denied Avastin....it was totally unexpected. A very humbling experience. I'm glad Ralph was there to share it with me. I then read the testimony that I presented to the legislature in February about the proposed elimination of the Health Care Advocate Office. Again, I was overwhelmed with emotion when my colleagues gave me a standing ovation. Thank you! Thank you! I am honored to know you.
Suzanne, Wendy (my Twisted Sister) and I took the ferry from New London to Orient Point on Monday. It was nice enough to hang outside on the deck where it brought back special memories of heading to the Vineyard. After lunch at the Rowdy Hall in East Hampton I showed Wendy and Suzanne where the Barefoot Contessa's home was. We did get a few pics, thank you Wendy for playing the celebrity stalker. It was quite comical. We went to the beach which was just beautiful and then headed to the outlets in Riverhead. We were using the GPS, "Condescending Connie" who repeatedly directed us off the main drag down backroads. It took us awhile to figure it out but once we did, we shut her right down. She can be so annoying! Did some shopping and then had dinner when we realized "we don't have much time" to get back to the hotel to watch Jack Bauer on "24," one of our favorite shows. But with my lead foot and then a run through the lobby and down the hall to our room, we managed to make it just in time! We were laughing so hard some of us wet our pants!!
Got to visit the daffodils in Hubbard Park with Liz this week. How beautiful they are! Liz tells me the tulips in Elizabeth Park in Hartford are awesome too. Road trip in the works.
My fractured rib is feeling better. I tend to overdo it when I feel well, but then pay for it and have days I accomplish very little. But I'm not complaining. I go for my echo tomorrow and then go for Avastin a week from tomorrow. I made an appointment to see Dr. Marcoux in Boston in early May and have him review my scans.
So there you have it--the latest at 600 Arbutus. Oh, one more thing, we have three of the sweetest Weselyan students filming us for a documentary they are making for a class. Can't wait to see the final project. Even Chester got in on it! Welcome home to Mr. and Mrs. Rome!! Happy Spring to all of you and as always thank you for your love and support. Pictures to follow soon.
Bye-bye for now,
Lot of Love,
Sunday, April 5, 2009
Hi Everybody, long time no entry. Two weeks ago I developed acute rib pain and had x-rays which didn't show anything. I still cough quite a bit and have been more active (like showing my 3 y/o neice how to do the down dog yoga position earlier in the day.) Later that night, when I was settling into the recliner was when I first noticed the pain. Had my cat scan last week and it did show a nondisplaced fractured rib. The cat scan didn't show any evidence of cancer in my bones. It also showed that I have a little fluid around my heart which wasn't there before. I see Dr Dailey tomorrow for Avastin and we'll talk about what further testing to do. I'll probably have an echocardiogram to check out the fluid and maybe a bone scan. The scan said all the cancer is stable. I've decided to go see Dr. Marcoux in Boston and touch base with him about everything. So the rib pain has slowed me down a bit, but it has been getting better.
Meet my friend Nancy above, a blast from the past. We haven't seen each other in almost 7 years. Nancy and I worked at St. Raphael's together many, many years ago when we were young--younger than the residents! It was great to catch up and share stories from when we were the original "Nurses Gone Wild".
To celebrate Spring, Wendy (my Twisted Sister) and I hosted a Spring Bling Fling and had us a girlie party (yes, even Mario was there!) featuring Wendy's jewelry. It was a wonderful turnout with a super group of people. Thank you to everyone for coming and also for cleaning up afterwards! We must do it again! I never heard so much laughing.......Theresa, my sister-in-law meets Mary C (drug rep, yep, if you work in the field, you know who I'm talking about) and we had our own Last Comic Standing Show! Both of you should really take it on the road!
And to top off the weekend, Dennis and Rosie were here. I kicked Rosie's butt at Scrabble making a hell of a come back and once again hold the title of champion. She's stil crying her eyes out over that one. Dennis made us his famous Bloody Mary's (his Sunday morning ritual), the second best we've ever had. The first best--everybody else's!!!
Sister Shirley is leaving for Rome on Friday. She's been leaving me at least 10 messages a day as to why I should go: she has my suitcase packed; she's got the "best of gelato" list in her ipod touch and she's going to visit all 100 shops; she's scheduled Easter dinner with the Pope; she'll carry me up the Scalinata di Spagna, (the steps of Spain) on her back; she'll pretend she's a gladiator at the Colosseum; we'll play hide and seek in the mazes at Tivoli Gardens; she wants to play Marco Polo at the Trevi Fountain and she needs somebody to play with. My sister, nutcase.....
It was a beautiful day today. Hope you all got to enjoy it. Special thanks to cousin Laura who I understand ran a race in my honor. You are so sweet! If you can, send me pictures to email@example.com and I'll post them here.
Love you all very much!!
Monday, March 16, 2009
I am feeling well. Got decked out in my Saint Patrick's Day gear for my Avastin visit today. What would St. Patrick's Day be without green M&M peanuts??? Special thanks to Liz an d Peg for accessorizing me for the Hartford St. Patrick's Day Parade on Saturday. We had a great time mingling with all the Irish and wannabe Irish folk! Attorney Blumenthal was marching in the parade and I got to speak with him briefly and once again thanked him and his staff for their help with the Avastin appeal. Lunch at City Steam after was very entertaining with men in kilts playing their bagpipes. I was so tired from the parade that I missed corned beef and cabbage that night at Joycey's. Damn, I really wanted to be there and I was, in spirit. Nothing like a Streeto gathering for some great food and plenty of shenanigans. We'll have to do it all over again Joyce!
I did have a MRI of my left hip and lumbar spine recently because of some chronic low back pain that persists. Thankfully, the MRI was negative. I will have a cat scan at the end of the month. Can you believe it will be a year in April since I was diagnosed?! I wasn't sure I would be here, glad I am!!!!! Time for another party!
I spent last weekend in Jersey, Exit 105, helping Rosie recover from her foot surgery. She had to have a wire removed that was left in her foot (OOPS!) after her last surgery in October. She's doing really well and will be able to visit us this weekend. There were lots of laughs, especially when I showed her doctor the little fake foot that I brought (compliments of my podiatrist). We told Rosie the foreign object was really the mini foot. Rosie likes to tell people it was her undevleoped twin. Can you imagine if Rosie had a twin??!!! Scarey!! I also have pictures of Rosie carrying her crutches that I intend to blackmail her with. She gives a whole new definition to minimal weight-bearing!!
Ralph and Jared are great. Jared is still looking for a job. He has a couple of temporary jobs lined up later this Spring but is so ready to join the real workforce. I keep telling him, it'll happen.
Hope you got to enjoy the wonderful weather yesterday. I went out and did some raking. I decided if my back is going to ache I might as well give it a good reason to and today you could say I have definitely earned that handicapable sticker!
Please know I'm so appreciative of all your messages, cards, good wishes, prayers and lots of love. It truly keeps me going!!
February 20, 2009
Thank you to everyone who contacted their lesgislators in support of NOT eliminating the Office of the Healthcare Advocate. While I have attended public hearings before, I have never testified and I will say it was a powerful experience. The room was silent as I spoke and I made a point to make eye contact with each one of the legislators. I know Sue posted the CT-N website, but I was not able to quickly fastforward it and had to run it for the 2 hours and 24 minutes before we could watch it. I post my letter here for those who weren't able to watch it:
My name is Sharon Hines and I am an oncology nurse practitioner. For more than 30 years I have advocated for people with cancer as they struggle to live with a life changing, and for many, a life threatening illness. In April 2008, out of the blue, I was diagnosed with Stage IV lung cancer. After the shock and disbelief eased, I knew my knowledge and experience would help me in the most difficult challenge of my lifetime.
And then the nightmare started. I was stunned when my insurance carrier denied a treatment that was recommended by both my local oncologist and my Boston oncologist, the Medical Director for Thoracic Oncology at Dana Farber Cancer Institute. The treatment was FDA approved for patients with advanced lung cancer. Adding Avastin to my chemotherapy regimen could extend my survival and the time to progression of my disease. An appeal was submitted by my oncologist to the insurance carrier with supporting data. Once again they denied the treatment. The anguish, despair and anger I and my family felt was crushing. I could not comprehend that the insurance company had the right to deny treatment that was a standard of care. And suddenly, it wasn't the cancer that was to be the biggest battle of my life, it was the insurance company.
I was fortunate to be directed to the Office of the Healthcare Advocate (OHA). With their unending guidance and support, an external appeal was filed. In a matter of days I found out the external reviewer had reversed the decision made by the insurance company. I would be able to get the drug. It is now more than 6 months since that time. My cat scan 2 weeks ago was stable. I feel well and have an excellent quality of life.
I ask our legislators to seriously consider the consequences of eliminating the OHA. As my case demonstrates, the insurance company was misguided and uninformed. Over the years I have seen so many patients and families who were too overwhelmed, too sick, or too intimidated to take on their insurance company. The OHA is there when people are at their most vulnerable. In some cases, it may be a matter of life or death. These are people who need your protection. Insurance companies now more than ever, need to be held accountable for their decisions. Without the OHA, there is no accountability. I and the citizens of Connecticut are counting on you to do the right thing.
I'll keep you posted as I hear new information.
I did get to NYC with Shirley and Mike, and Sue last Friday night. Mike, Sue's husband and Jared came down on Saturday and stayed with us until Monday. Ralph, my valentine, came down on Sunday. Shirley, our world traveler had done all kinds of research on where to go and places to eat. It was so much fun and Sue has pictures I'm sure will incriminate all of us when she posts them. She told everyone she was recording a documentary. We stayed at the Hyatt at Grand Central and walked or taxied everywhere. And when I flung myself on the ottoman in the lobby after coming home from Annie Moore's, the local Irish pub, one of the staff told Sue I shouldn't be doing that and she replied, "she has cancer and we let her do anything she wants." It was very funny!
The highlights included a beautiful bouquet of flowers and a tear jerker card from "The Ralph." Valentine's Day is our first date anniversary from many years ago. Breakfast at Ellen's Stardust Diner with it's 50's motif and where the wait staff wear poodle skirts or chinos and take turns belting out all kinds of songs. It was very entertaining. Everywhere we ate, the food was awesome. Dinner at Cibos and Osteria Laguna, breakfast at Persing Square, no wonder my pants wouldn't zip by Monday. A big bravo to Chickalicious, a dessert bar in East Village where the triple chocolate ganache filled cupcakes were the best I've ever had anywhere. We also saw Wicked, a great play about the witches of Oz. Of course there was time for shopping at Century 21, Macy's and Chelsea Market. We got to the Met on Sunday, another wonderful place to hang out. I sure did get tired and needed to rest each day, but once I did, I was ready to go again. Thank you so much Shirley and Sue, Mike and Mike, Ralph and Jared for a very memorable winter getaway. I love you guys so much!!!!
More news on the homefront: after 5 weeks, Jared got laid off from ESPN. I feel so bad for him, he loved the job. It was a surprise too. The company he was working for, Edge Technology, had told their employees, layoffs weren't expected. So he's on the jobsearch again. As Jared says, thankfully I live home.... And Chester, is great, he makes me smile all the time with his great personality and damn good looks. I'm due for Avastin on Monday. I'm feeling well. But both Barbie and Rosie are having surgery again, Barbie on her previously fractured ankle and Rosie, for the persistnet swelling due to the wire that was left in her foot after her last foot surgery. Looks like I'll be driving the two gimps around again!!
Hope everyone is enjoying seeing the grass again, even if it is brown, Spring really is right around the corner.
Love to all of you!
Tuesday, February 10, 2009
I just wanted to post a link for those of you who wanted to see Sharon's appearence on Connecticut Network. You can fastforward if you like to 2:24.
Sharon I know I am speaking on behalf of everyone, we all love you, support you and are so proud of what you have done.
I love you!
P.S. She was interviewed by The Hartford Courant, and should be appearing in Thursday February 12th edition!
Saturday, February 7, 2009
Important Update on State Budget Cuts
On Thursday, while listening to CT public radio, I heard Kevin Lembo, our state health care advocate, being interviewed. As part of budget cuts, Governor Rell has recommended the Office of the Health Care Advocate be eliminated. It was Kevin's office that helped me through the appeal process when CTCARE denied Avastin. If it wasn't for them I would not be getting the Avastin. And if this office is eliminated, the consumer will have absolutely no recourse when denied a course of treatment. The insurance companies will have the final word. Neither the CT Insurance Department or the Attorney General's office will be able to help. We can't let this happen.
I contacted Kevin to ask him how I could help. Enclosed is his response. I encourage you to contact your legislators and to share his letter with your families and friends. There is an appropriations committee meeting Mon evening at 6PM so time is of importance in responding to this critical issue. I have enclosed the contact information at the end of Kevin's letter.
I hope you are able to support a cause that is near and dear to my heart. Thank you!!
Sharon, Thank you so much for your offer to help. Calls to legislators thanking them for their support of the office, and encouraging them to remain strong during the battle that lies ahead would be helpful. Letters to the Editor are also great. Finally, letters to the Chairs of our Appropriations Subcommittee (Senator Andrew Maynard and Representative Linda Orange (with copies sent to OHA, the Chairs of the large Appropriations Committee [Senator Toni N. Harp and Representative John Geragosian], and local Senator & Representative). Our Approps hearing is Monday evening at 6pm, so the letter to Maynard and Orange would need to go asap.
The mailing address at the Capitol is: Legislative Office Building, Hartford, CT 06106
If folks call the committee (860-240-0390) they can also get the fax and general email address.
Finally, you can find your state Senator and Rep. by looking here: http://www.cga.ct.gov/maps/Townlist.asp <http://www.cga.ct.gov/maps/Townlist.asp> From there, it's easy to go to their page and find their direct dial, email address and fax.
Obviously, the human story of our agency is the most important, and no one can tell that story better than the people we've helped (or folks who didn't get our help and had a bad outcome). We also need to remind folks that patients will have NO other place to go if OHA is cut -- not the Insurance Dept (especially if you're in a federally regulated plan), not the AG, not the Office of Health Care Access (this is the certificate of need agency for hospitals, etc. that often gets confused with OHA).
Unfortunately, this is framed as a fiscal problem so the bullets below might be helpful.
Again, thank you. Hope to talk to you soon. That's me cell # below. People should feel free to call if they have a question or get stuck in the process. K
Office of the Healthcare Advocate (OHA) More Information: 860-463-6569 (mobile); 860-297-3992 (fax)
· The OHA is an independent state agency.
· The OHA receives its funding from the Insurance Fund (like the Insurance Dept.) -- this is a levy on insurance companies to pay for their own regulation and for the consumer advocate (OHA).
· The OHA and Insurance Dept. (CID) have very different roles. CID is the regulator. OHA is the consumer advocate. CID can only help consumers who are in state-regulated plans. 50% of insured Connecticut residents are in federally regulated plans.
· The OHA ensures that health insurance companies meet their contractual obligations and pay for the medically necessary, sometimes life-saving, treatment patients need.
· If it was Governor Rell's goal to help close the budget deficit by cutting OHA, this strategy won't work. Cuts to the CID or the OHA do not help to close the General Fund deficit. In fact, cuts to CID or OHA go back as a credit or bonus to the Insurance Industry.
· In coordinating benefits, OHA has a high level of success. When patients max-out their private insurance because of catastrophic illness, they sometimes get access to a public program as a back-up. The back-up (HUSKY, Medicaid, DCF) is always secondary. OHA ensures that the private coverage meets all its obligations before the public insurance (taxpayer-funded) kicks in.
· The OHA helped more than 2,000 patients last year to resolve problems with their health insurance coverage.
· OHA's assistance resulted in $5,200,000 in consumer savings last year - the value of the claims that we helped to overturn.
· The OHA's budget (08-09) is about $1,000,000.
· For every dollar we spend from the Insurance Fund, we return $5.20 to the pockets of patients.
· Since 1/1/05, OHA has helped about 7,500 patients and returned nearly $14 million in savings directly to patients and their families.
· With higher unemployment, and an anticipated increase in denials for those lucky enough to have insurance, the need for OHA will only increase in the coming years.
· The Office of Fiscal Analysis often cites OHA's performance measurement, "For every dollar we spend from the Insurance Fund, we return $5.20 to the pockets of patients," as a high-quality performance measurement example in their Results-Based Accountability (RBA) trainings, done in partnership with the Charter Oak Group, LLC.
1. Cutting OHA does not help solve the fiscal crisis.
2. Cutting OHA only enriches the insurance companies.
3. Cutting OHA means direct and immediate harm to consumers.
4. Cutting OHA could mean more Medicaid spending.
Subcommittee Appropriations Committee Chairs:
Senator Andrew Maynard: 860-240-0584, firstname.lastname@example.org. (I already left a message on his voicemail).
Representative Linda Orange: 1-800-842-8267, Linda.Orange@cga.ct.gov.
The chairs of the main appropriations committee are:
Senator Toni Harp: 1-800-842-1420, email@example.com
Representative John Geragosian: 1-800-842-8267, firstname.lastname@example.org
Wednesday, February 4, 2009
Hi Gang, great news, my cat scan is stable. I will continue on the Avastin for now. I'll have another cat scan in about 6-8 weeks. I continue to feel well with some minor side effects from the Avastin. Ralph had a birthday on Monday and went with me for my treatment. It was so nice to have the day together. He doesn't get much time off in the winter. At the end of the day he went for reflexology and a reiki treatment at the Cancer Center at Middlesex. He loved it and now understands why I love it too.
Did you get to see my interview last Tuesday? Ralph said he thought he was watching a cooking show. By the way, that was curried butternut mushroom soup I was making. If you missed it, it is still on the wtnh.com website. Once there, hit the news tab and then scroll down to Health. Look for the "Health Care Advocate" story. I sent the website to the NP at DFCI in Boston and she told me she referred a CT patient to the office after seeing it. How cool is that!
Had a great w/e with Rosie and her high school friend, Dennis, a "blast from the past." Rosie beat me at Scrabble by a mere 3 points. She has to be watched closely as it's not uncommon for her to have several blanks on the board. Remember, Scrabble only has 2 blanks. We got together with the Streetos Sunday evening to celebrate Joyce's, JJ's, Joanne's and Ralph's birthdays at Portofino's in New Haven. Dinner was very good. I wish I could say the same for the group's behavior....
Joannie-I loved your turkey hat photo! I am in the market for another hat, maybe a spring theme like a groundhog, or a tulip or daffodil. Keep your eyes open...
Posted a few new photos. The CT River sunset above was taken by our friend Pete.
Hope all is well in your winter wonderlands!
Tuesday, January 27, 2009
I justed wanted to post what was on the Channel 8 website. Sharon on behalf of all your loyal fans, we stand proud in your corner!!!!
Loving you so much!
Health care advocate
Last Edited: Tuesday, 27 Jan 2009, 4:20 PM EST
Created On: Tuesday, 27 Jan 2009, 4:20 PM EST
- Story b y: Jocelyn Maminta
Middletown (WTNH) - Imagine battling cancer and at the same time fighting the insurance company about your course of treatment. It can happen to any one of us. And for one Middletown resident it did. But she found out that her lifeline was only a phone call away.
A hot, hearty soup on a cold winter day has cancer patient Sharon Hines happily cooking in the kitchen. Hines, a non-smoker, has lung cancer. But that has not been her only challenge.
"I was totally stressed out by this," Hines said.
She is stressed out because her insurance had twice denied an FDA approved therapy which her doctors had prescribed.
"The insurance company felt that the Avastin was not appropriate in my situation because I had taken this other therapy first," Hines said.
But as a nurse who specializes in cancer care, Hines knew it was the right course of treatment.
"Avastin can actually prolong your survival, it also can delay the time to progression of your disease," she said.
Approval finally came after Hines called the State Office of the Health Care Advocate.
"Don't accept the insurance companies' word as final," Kevin Lembo, Connecticut Health Care Advocate, said.
Lembo is Connecticut's Health Care Advocate. "When you are facing cancer, or cardiac illness or diabetes or other life threatening diseases, you need as many people on your corner as you can get because you need to focus on being the patient, getting well," he said.
Last year, Hines was among the more than 2,000 cases the office handled.
"Connecticut is very lucky as well in that it's one of a few states that has an independent office like this," Lembo said. It "doesn't work for the insurance industry, doesn't work for the insurance commissioner and is really there to work for the consumer."
"I understand, now that I have been through the process, that you want to call them sooner rather than later," Hines said.
It saved Hines $100,000 -- the cost of the drug she would have paid out of pocket if the health care advocate office had not intervened.
Last year, the office of the Health Care Advocate saved consumers $5 million in costs.
Monday, January 26, 2009
Hello, just heard from Jocelyn, Channel 8 news. The story will be aired tomorrow night between 5:30-6:00PM. Hope you get to tune in.
Friday, January 23, 2009
Hi Gang, sorry for the inconvenience, the story wasn't finished in time for yesterday's news. Jocelyn will let me know when it will be aired. I'll keep you posted.
I wanted to share a few pictures of my Physical Therapy team who take such good care of me. The PT was a great help in rebuilding my endurance and stamina as well as working out all the kinks that I have. They're a fun group to hang out with! Please note that's not a Christmas tree in the picture but a Valentine's Day Tree!
Speaking of Valentine's Day, my sister Shirley is planning a trip to NYC that weekend for a bunch of us which should be a really good time. She is our personal travel guide and not only will we see in a weekend what takes most people a week to see, we will eat our way through the city!! New York, here we come!
I'm heading to acupuncture this am and happily awaiting Rosie's (Exit 105) arrival tomorrow. It's not me she wants to see, but my hair!! Wish you all a great weekend!
Wednesday, January 21, 2009
Today I was interviewed by Jocelyn Maminta from channel 8 news. The story which focuses on my experience with the Office of the Healthcare Advocate and the Avastin appeal will air tomorrow on the 5-530 pm news. She and her cameraman were very kind, warm and a pleasure to meet. I totally forgot to take a picture with her, so the picture above is from the channel 8 website. Hope you get to tune in for the story.
On Monday evening, Jared and I, and friends Mike and John went to Boston to catch a Celtics/Phoenix Suns game (another bucket list item). It was so much fun. We went to Fours, an older well-known sports bar right near the Garden and got all caught up in the excitement while enjoying some good food. John, a Phoenix Suns fan, spent the evening "crying his eyes out" as the Celtics crushed his team. We hit no traffic in or out of the city and found our way without incident. Thanks for getting us there and back safely Mike. For those who may be interested or know of someone, Mike is an almost 30 y/o eligible bachelor who would be a great catch for any women (too young for you Rosie!!) As soon as Jared sends me our pictures from our adventure I will post them.
I attended the radiation oncology department postholiday party Friday night. This is a very special and whacked group of people who I very much enjoy being with. Thanks for the invitation. Sorry about the food fight....
I continue to feel well. Will have my cat scan a week from Thursday. I see the doctor on Febuary 2nd, Ralph's birthday and hopefully will continue on the Avastin alone.
Have a great week everyone. I thank God everyday for all of you and your love. You rock!!
Thursday, January 8, 2009
Happy New Year Everyone! Hope all is well with you and your families. Here at 600 Arbutus, life is good. I feel good, more energy and the appetite has turned on. Must have been the holiday M&M peanuts (my favorite candy) that kicked it up a notch.
We had a very peaceful Christmas and spent the afternoon/evening with the Streeto family who are always so much fun. And all great cooks too! That weekend, there was an "in the hood" party at the O'Neils. Several families from the old neighborhood got together to share some wonderful memories and great food. The kids are all young adults yet I can still picture them running in a pack like wild dogs through the hood, playing Tag, Spud, or Duck Duck Goose.
My neice, Emily spent a couple of nights with us during her Christmas vacation. We were quite busy, baking, doing jigsaw puzzles, playing legos and Barbies, and making hot cocoa. She was snowed in with us New Year's Eve and stayed up to watch the ball drop. She would have stayed up all night if I let her. I was exhausted from so much fun!
Ralph and I spent last weekend in New Boston, MA, just over the CT border from Winsted where we did a get away with good friends. It was snowing on Saturday when we woke up, just beautiful. The house sat on a huge lake out in the middle of nowhere. There was Liz's famous spiked wassail to warm us up after walking the snow-covered trails. The stars could be seen through the skylight at night, another nice treat. Ed and Liz entertained us on the piano while Ralph and Peter would intermittently break up the peacefulness with their primordial love calls to each other. It was a great time.
Jared started at ESPN this week. Hurray!! He'll be doing data entry and can work as many hours as he wants which is a good thing since he wrecked his car last week. No one was hurt and for that we are so grateful.
My next Avastin is on Monday. Yoga starts up again next week and I have an appointment to have reflexology for the first time too. My physical therapist, Sue, has been so helpful with all the aches and pains that come with my increased activity level. I continue to do the acupuncture once a week and squeeze in a massage here and there. And as you'll see in the photos I added, I'm growing hair. Yes, life is good.
God Bless you all!
Saturday, December 20, 2008
Merry Christmas Everyone!
Sharon, Jared and Ralph
We've added a few more photos to the website for your holiday pleasure
Thursday, December 11, 2008
Hi everyone! Ralph, Jared and I went to Boston on Sunday afternoon and spent the night there prior to my appointment at Dana Farber on Monday. We had a wonderful dinner at Monica's in the North End. We then dropped Jared off at one of his high school friend's apartment where the two of them hooked up with another high school friend (both go to college there) and they all hung out together for the evening.
Jared got to see how big and wonderful DFCI is and meet Dr. Marcoux for the first time (check out the picture). Dr. Marcoux agreed the largest tumor had shrunk as well as the nodules. He agreed staying on the Avastin every 3 weeks was reasonable as I really needed a chemo vacation to recover from the side effects. I'll have my next cat scan the end of January and as long as everything remains stable, I will stay on the Avastin. It does not have the fatigue and nausea the chemo does and I had no problems after I got it last week.
I have been feeling much better this past week. My energy has improved. I will be starting physical therapy to increase my endurance and stamina. I want to get back on the treadmill. I will also be seeing a pulmonologist to help manage my respiratory symptoms.
Jared taught me how to download pictures onto the computer finally. Another major accomplishemet! I posted a few - our friend Pete from Va and the pumpkin dinner and Thanksgiving. The picture above is from our first snowfall last week. I had hung the wreaths and decorated the windowboxes on the shed just in time. Although I must say the wreaths have spent more time on the ground than on the shed with the wild wind over the last few days. Every year we have a wreath-making party - a real hen party. Thanks for hosting it Jeanie! Sorry no pictures, too incriminating....
I hope you are all making time for yourselves to enjoy the spirit of the holiday season. I am blessed by your generosity and good will each and every day.
Love you all,
Tuesday December 2, 2008
Good morning gang. The cat scan has shown some shrinkage of the largest tumor with everything else unchanged. This is all good. I will return to Boston on Monday and see Dr. Marcoux to review the scan and my treatment options including eligibilty for clinical trials offered there. I am finally feeling better after the last treatment. I had started coughing more and was prescribed an antibiotic and nebulizers which have helped. My counts are perfect and I had Avastin only yesterday. Hurray!
I want to thank everyone for all the invites we had for Thanksgiving. We opted to stay home because I was tired and had just started on the antibiotic. Ralph did all the cooking and a great job at that. We hung out in front of the fire listening to music and I worked on a jigsaw puzzle. It was a day I will treasure, very peaceful and restful, just hanging out with Ralph, Jared and Chester.
Speaking of Chester, he is so much fun. He loves to hang out with me but is still getting use to the guys. He's very loving and goofy. Ralph forgot he left catnip on the counter in the basement and sure enough Chester found it, ripped open the bag and spread it all over the basement. He wouldn't come out from behind the sink, he knew he did something big. It was pretty funny and I have to thank Brian who had come to meet Chester for vacuming it all up.
Hope you all had a wonderful Thanksgiving too. As always, I am grateful for all of you.
November 19, 2008
Good morning. I went for chemo last Monday. My white count was still low and I received a shot of Neulasta on Wed after treatment to help boost those little soldiers. This was the last of the big chemo treatments and it kicked my butt. I had some underlying nausea that never went away and felt extremely weak and tearful. Thank God for my fam who got me through some pretty awful days. By Sun I was feeling much better. A visit from Rosie, exit 105, and the entire Denker family did wonders for my spirits. Love you guys!
I had my counts checked on Monday and the Neulasta definitely helped the white count. We'll see how they are next Monday. My cat scan is sheduled for after Thanksgiving.....scanxiety will be setting in.
And now an update on Chester the cat, he surfaced last Saturday night. He's been hiding behind and under the sink in the basement. Our high school good friend, Peter Dennant was here from Virginia and was determined to find him. He found Chester hiding with half his body hanging out from under the sink cabinet. By Sunday night he came out when I called him and he has slowly been warming up to us. He has the cutest face ever. See his photo above.
I look forward to him joining me in the recliner!
Thanksgivning is my favorite holiday and I want all of you to know how grateful I am for your love and support, thoughts and prayers, cards and notes, meals and deserts and all the things you do for us here at 600 Arbutus. We wish you all a peaceful and joyful Thanksgiving.
Sharon, Ralph and Jared
Tuesday November 4, 2008
Good morning. No chemo this week, my white count continued to drop so I was given, Neupogen, a shot to stimulate their growth. I'll get treatment next Mon. I did end up having a lot more wheezing and cough and started an antibiotic and Prednisone which have helped greatly. I felt well enough to get out in the garden this past week and cut down all the dead flowers. Sunday was so beautiful I stayed out their for a couple of hours. All that squatting and bending have made me a bit sore but it felt so good to be able to work in the garden, it's worth every ache and pain, well almost.
We had a wonderful pumpkin theme dinner at Liz and Brian's with a few friends on Saturday night. I have to tell you the menu because it was truly amazing. It started with pumpkin martinis, pumpkin beer, or pumpkin wine. The first course was pumpkin soup followed by salad with roasted pumpkin, pumpkin bread, pumpkin meatloaf, pumpkin polenta, a whole roasted pumpkin with vegies, pumpkin cheesecake, pumpkin pie, pumpkin ice cream and pumpkin coffee. I may have forgotten something, but you get the idea. Lots of pumpkin jokes going around. Surprisingly, no one got pumpkinitis!!
We also brought Chester the cat home on Sat but haven't seen him since. He's hiding out big time but does appear to be eating and using his litter box. I'll give him a few more days and then as my brother-in-law, Mike suggested, will put some flour on the floor and follow his paw prints....
Love to everyone!
October 29, 2008
Hi Everyone, just got back from a long weekend trip to NJ with Barbie to visit her family and then on to Exit 105 to visit Rosie (post bilateral foot surgery) and her family and friends. What's wrong with this picture??? The Stage IV lung cancer patient driving around the two gimps. Between the 3 of us, we had 2 good legs and they were both mine!! Rosie is doing well but like any woman after surgery, not staying off her feet as much as she should. We attended Barbie's 3 y/o neice's birthday party and got to see all my favorite Duncans including cousins Mark (my cancer survivor soulmate) and Bob. Great party Rob and Enricada! Then it was off to downtown Asbury Park to check out one of the new bars. Asbury Park is making a great comeback and has a lot of new restaurants, bars and stores to browse through. Got to see Cindy, our vacation mate from 2007 and then over the course of the w/e all the Baselici clan and Rosie's good friend Sally. You're all whacked but I love ya! A visit to the boardwalk in Asbury on Sunday was gorgeous. It was a beautiful day and lots of people out and about. The waterfront is also making a comeback and is a great place to hang out. Got myself some Tillie earrings, an icon from years past (see the picture above).
I'm feeling well, no more nausea but my counts remain very low, hopefully will recover in time for chemo on Monday. Ralph is great. Jared comes home from San Diego late tonight, can't wait to see him. I've found a cat online from a shelter who is available and may have him by the weekend. His name is Chester and he is an orange tabby about 4 years old. I'll tell you more about him after I'm sure he's coming home with us.
I'll post some pictures from the NJ trip soon. Hope all my peeps are well and know that I love you all and so appreciate all you do for us!!
October 17, 2008
Wow, it's been a long time since I posted anything on the site. I'm still recovering from the wonderful party Ralph hosted on the Lady Katherine on my birthday. Great job Ralph and a special thank you to all who helped him put it together! Thank you to everyone who was able to come. I had a great time, especially watching Ralph dance all night long.... I was so excited to see all the Hines family, all those aunts and uncles and cousins. I love you guys! New Jersey made their presence known too--We had almost all of Rosie's family from Exit 105 and beyond and Barbara's Mom from exit 117. A bunch of party animals, that's why I love them. As you can see, my neon purple hair was a big hit and Jared has made a great recovery, back to work already.
I have pictures to post from our vacation and the party and a fall foilage tour from last weekend. This was on my bucket list, a re-enactment of a limo ride with some special friends cruising the northwest hills. Only this time I didn't do it in my wedding gown and we didn't stop at any tag sales. It was a gorgeous day with a heavy-footed limo driver which made for some sliding around in the back of the limo, but despite that, we had a great day.
I went for chemo on Monday, had the new drug, Gemzar, along with the Carboplatin and Avastin. Unfortunately, this one has given me significant nausea that's been limiting my activity and intake this week. I have meds to take, they help some. I did go for acupuncture yesterday and that does help. One more cycle of this combination in 3 weeks and I'll have another cat scan.
A special note to Rosie who had foot surgery on both feet last week. Another handicapable friend to join the Crutch Club started by Barbie. We wish her a speedy recovery so we can spend some of this time she has off hanging out together.
Our love to everyone,
Saturday, October 4, 2008
Hi family and friends. Went to see Dr. Marcoux at DFCI yesterday with the Ralph. After reviewing the cat scan he told me there has been 20% reduction in the tumor which is the minimum percentage they like to see to call it an adequate response. He also said a couple of the other tumors were cavitating which means falling in on themselves or getting smaller which they see when the Avastin is working!!! Thank God we pursued getting the Avastin approved. I am having more neuropathy of my hands and feet from the Taxol so he will be talking to Dr. Dailey about substituting that drug with something else. But for now, I continue on treatment every 3 weeks, have regular cat scans and as long as I have continued response or stability this will be the plan. Another great sigh of relief and tears of joy! There's much to celebrate along with my birthday tomorrow and the other Libra family members. Happy birthday to Mike Ferragamo, Avery and Kyle Denker, Opa Denker and anyone else blessed to be a Libra!
Love to you all!
Saturday september 27,2008
Jared came home this afternoon!!! No fevers for the last 24 hours so they let him go. And boy, was he ready to get out of there. The hospital is never a place to get any rest! It's so good to have him home. I'm down for the count with body aches and fatigue. Ralphie has his skirt and nurse's cap on and we have him running. He's doing a great job!!! Good weekend just to hang out with the family, even if 2/3 of them are not fully functioning. The article about dealing with insurance appeals was in the Wall Street Journal and here's the website for those of you who'd like to check it out. Once I get the DVD for the CPTV taping I'll see if we can post it here. The cable schedule is more difficult to get as it goes to multiple local cable channels and plays at different times. A very big thanks to Dr. Malon and all the staff on N4 and throughout MH, your care exceeds the expectations, as always!
Wednesday September 24, 2008
Good morning! I wanted to let you know that Jared had surgery last night at MH for a perforated appendix. While I was at chemo, he was in the ER wtih acute abdominal pain. Ralph and Sue opted not to tell me until I was done which was just as well, I would have been a basket case. He had a cat scan while I was enroute and Ralph told me his white count was elevated so it was the first thing I thought it could be and called our favorite surgeon, Andrea Malon who just happened to be on call and did his surgery at 8:00 pm. She said he tied for first place in the worst case she's seen. Nice to be first, huh? He'll be in the hospital for a few days to get all the antibiotics he's going to need. The nurses said he had a fairly good night, they were working on his pain control and were getting him up for the first time this am. I will be rescheduling my visit to DFCI tomorrow, probably until the week after next when I will be over the side effects of chemo. Will keep you posted, never a dull moment at 600 Arbutus!!
Monday, September 22, 2008
Hello, just got my cat scan results: slight improvement in the right lower lobe tumor and the fluid that was there. So, overall good news! It hasn't progressed and I will go for chemo #4 tomorrow as planned. Then to Boston on Thursday to see Dr. Marcoux. What a relief, it's been hard to know what the chemo was doing and now I will complete a total of 6 cycles, so should be done sometime around the first week in November.
Our trip to the Vineyard was great until Friday when Barbara tripped on the stairs, fell and broke her leg. She came home Saturday too rather than staying another week as planned and I'm so sorry she and Ed are missing their 2nd week of vacation. The ER there was great, put her in a splint and told her she needed to see an orthopedist. She decided to come home because there was not a bedroom or bathroom on the main living floor and she had been told not to weight bear. She's not good with crutches either, so she decided to come home and was put in a walking cast today. She also sprained her right ankle. But at least she can walk now and not have to crawl around on all fours which was quite the site! We did get to the beach everyday, saw some incredible sunsets and a harvest moon that were just spectacular. Lots of good food and wine, thanks to the cooking skills of Rosie and Barbara. My friends treated me like a queen and I savored every minute. Barbara had arranged with the local hospice there to have a recliner delivered to the rental house for the week. They had a local furntiure store deliver a floor model. Thank you Barbara, so thoughtful you are and quite innovative of the hospice team. I was able to meet the nurse and personally thank her for their help. Barbie also benefitted from the recliner as she had to sleep in it the last night. Had a wonderful massage and acupunture treatment while there too. Got to hike in the woods for over an hour one day and had good energy to do so. We always end our week with a spectacular meal at the Beach Plum Inn which overlooks Menemsha. Rosie knows James the chef, who is from NJ, exit 105, and he too goes all out to ensure we have a very special time. We figured out we've been dining there since 2001. If you ever go, be sure to include the BPI on your agenda. It's our all time favorite. Tonight Ralph and I celebrate our 24th anniversary, another special day. We honeymooned on the island, which is another wonderful memory that keeps taking us back to a very special place. I married my best friend and it just keeps getting better. Jared is slowly getting his resume out there and in the meantime working at the First and Last Tavern in town. Once again, I feel so blessed to have all of you in my life. My love and heartfelt appreciation to all of you!
September 7, 2008
Hi Gang, sorry it's been so long to get back to you all. Today's photos are all about putting eyebrows on. A special thank you to Theresa, the family make-up queen. Mom is home and doing well, hurray!!. Since I last wrote, I got to meet Assistant Attorney Tom Ryan, and Attorney General Richard Blumenthal. It was so nice to meet them. I am forever grateful for their help. I also got to meet Maureen Smith and Candy Cohn of the Health Advocacy Office, the nurses who first came to my rescue with the appeal process. CT is lucky to have all of you working for the consumer. Thank you for all you do.
I have been invited to do a 5 minute taping for CPTV on my experience in working with the Healthcare Advocacy Office with regards to the appeal. I'll get to do that on Friday in Hartford. And I was also interviewed by a Wall Street Journal reporter on the appeal process. I'll let you know when things will be available. Maybe you can tell me which of the eyebrows I should wear for the taping..... So those things kept me busy last week.
I did have treatment # 3 on Tues. Felt okay for a couple of days and then it knocks my socks off for a few days. The effects are cumulative too, so each time seems a little worse. I did experience numbness and tingling of both hands shortly after treatment and it lasted several hours which isn't the ususal presentation. I also had some itching of my foreams for a couple of days. Not sure what that was from. I live on the couch or in the recliner. (Thank God for that recliner!) I did have some nausea and other GI effects so I haven't been eating or drinking as well as I should. Lots of body aches too. I continue to do acupuncture and actually got it during treatment this time which may have been why I felt okay longer before the side effects kicked in.
Ralph and I are going to Martha's Vineyard next Sun for a week with Rosie, Barbie and Ed. We go every year at this time when the island is quieter but it's still warm enough to swim. Rosie and I first hit the island in nursing school back in 1975 and have made many wonderful memories. It is a healing and magical place. So, I would be due for chemo on 9/22 when we get back but I told Dr. Dailey I don't want a cat scan before I go and will do it that Mon after we return. I will see Dr. Marcoux in Boston that Thursday and hopefully this chemo is helping and we'll plan for 3 more treatments. If not, then I'll need to change the treatment, but I'm not going to even think about that until somebody tells me I have too.
Thank you for all your cards and messages. It's wonderful to hear from so many people and feel so loved.
Lot of love to you!
Tuesday August 19,2008
Hi gang, Mom finally was discharged from the hospital today and is she glad to be home! She's recovering well from her gallbladder surgery and will need f/u for all her heart issues.
I had chemo and Avastin (that's it above-should I send a picture to CTCARE?) last Monday, overall did well last week, the body aches were not as long lasting and I believe the acupuncture I have been doing really helps with not only that but the fatigue too. I did experience lower abdominal pain and cramping over the last few days and that too has settled down after acupuncture today. Hopefully all my side effects will get better from this point on. My white count was a little lower than last time at this point so we'll see what it looks like on Monday. My eyebrows and eyelashes are definitely thinning out and I'm learning how to draw on eyebrows. Everyday they look different!
Ralph anbd Jared got away to Nantucket this w/e to visit Ralph's long time friend, Greg, aka Stoney. It was the 30th anniversary of the annual demolition derby of which Greg's son Josh partook. They had great weather, got to the beautiful beaches and ate lots as Greg is quite the chef. Rosie (exit 105) visited this w/e and we had a great girls w/e with a beautiful guided imagery healing meditation courtesy of my best friend from Shelton, Barbie. Thank you Barb, it was a very moving and emotional event and I can't wait to do it again. Thank you to all who are participating in our weekly healing session, it truly is an awesome thing.
I am trying to post some more pics, so if there is one here, check out the photo section. I want you to meet my nurse Donnna and Dr. Mark Dailey.
Love to all, thank you for all you do!!!!
August 10, 2008
Mom is off the ventilator, still in CCU at Backus Hospital. She was out of bed in a chair today and taking some fluids. She is very weak, sleepy and in pain. Sue called to say her heart rate and BP were up tonight and they were medicating her for that. She was also very confused which sometimes happens after the pain medicine. She does have a lot of other medical issues which certainly can complicate her situation and has a way to go before they consider her stable. I've been able to see her everyday for brief visits but it's Shirley and Sue who visit several times a day and have been staying on top of her care. Thank you sisters! And thank you Barbie for organizing the long distance group healing meditation for all us wounded soldiers on Saturday. It is very much appreciated!
I've noticed some hair thinning since I've been on Tarceva, and more so over the last several days after chemo. Yesterday, I could literally pull my hair out, a very strange experience! I called upon my sister (in-law. but more like a sister and her hubby), Theresa and Tracy to ask if they would bring their clippers over so we could do the head shave show and have included some pictures I hope will make you laugh. We certainly turned what for some can be a very emotional event into a circus. Jared, who has experience shaving heads from all the years he was on the MHS swim team did the honors and a great job at that. Thank you Jared, you were very gentle! You know, the bald head doesn't bother me, I'm pleased to report I don't have any divets or dents. I think I look like my oncologist, Dr. Dailey (picture pending) or even my brother-in-law Tracy who both sport a very close-shaved hairdo. Now losing my eyebrows and eye lashes and taking on that alien look may be a different story for me.....I'll keep you posted. Tomorrow is chemo #2 with Avastin-- finally.
And one more thing, CBS evening news is doing a story tomorrow night at 6:30 PM on oil prices and the effects on the retailers. They came to Peterson Oil Co. in Portland CT and taped Ralph (no interview) loading his truck and making a delivery. Not sure how much of Ralph they will show, but if you have a chance, check it out. And please take note of how clean Ralph's oil truck is.....he'd love to hear about it.
Love to everyone. Thank you for all your prayers and support for me and my family. My heart is full with the love that surrounds us and I am grateful for all of you.
August 4 2008
Just got the word--the external reviewer has overturned
CTCARE's denial for the Avastin. They will now cover it!! Thank you to all of you who worked so hard to help me with this battle and for encouraging me not to give up when there were times I certainly felt like it. Ralph, Jared and I are forever grateful for your support.
August 1, 2008
Oops, don't know how to transfer letter to site, but will keep working on it.
August 1, 2008
Hi Everyone, I'm feeling much better the last couple of days. I was very tired and achey after the chemo. My white count is a little low and will continue to drop over the next week as expected, but then should recover in time for the next chemo. I am posting the Attorney General's letter about the Avastin appeal for you all to read. Very powerful and impressive. While the external appeal process of gathering information, multiple phone calls was draining, especially happening right after getting chemo, Tom Ryan, the assistant attorney general was awesome to work with as was Maureen Smith from the Health Advocacy office. Now we wait for a response from the external appeal committee. I thought I would know within a few days but it was the information they wanted as quickly as possible. I don't know how long it will take for them to make a decision.
Anne Resnick, a blast from the past and former MSW for Middlesex Hospice came to visit from Phoenix for a couple of days. We had a great visit and some good laughs. Thanks Anne for all your help!! I will try to post our picture of our visit with Kathy for all to see.
Love to everyone,
July 25, 2008
Thank you to all who have been on the horn rooting for my cause. The Assistant Attorney General, Tom Ryan has been on the case since Wednesday, the day I started chemo. He is waiting for further correspondence from Dr Marcoux from DFCI which we hope will significantly help wth the appeal. Dr. Dailey is back from vacation on Monday and will also be able to submit his letter. The problem is CTCARE considers Tarceva first line systemic chemotherapy which it is not. It is a targeted therapy and not cytotoxic. The chemo I got this week is considered systemic chemotherapy. I did not get the Avastin, as the covering MD felt we had time to resolve this issue before the next chemo is due in 3 weeks. The treatment went well, I slept through most of it because of the IV Benadryl that is given before the chemo. Felt tired but fairly good yesterday although the stress of this appeal has totally depleted any reserves I have. Today is the day that I will feel more tired and achey and I do. I'm enjoying this beautiful day and I am spending time on the deck vegging out. Check out the photos, The Denkers have been busy helping me pick out wigs! Thank you for all your love and support, it means everything!
July 22 2008
Hi everybody, tomorrow is my first chemo at Hartford. Unfortunately my appeal was sent back to CTCARE by the Insurance Commissioner's office and CTCARE upheld the Avastin denial now for the 3rd time. I can not believe this. Will the moron reviewing the appeal, please step forward. Have you any idea of the stress and anxiety your actions have on me and my family. Do you not understand what it is like to be told the standard of care that the experts have recommended and that which is being given to other patients throughout the state, as well as the country is being denied. This action directly affects my quality of life and prognosis. How would you feel if it was your mother, father, wife, husband, sister, brother, son or daughter? Extensive evidence supporting the use of Avastin in Stage IV lung cancer was submitted by experts in the field. Did anybody at CTCARESLESS actually read it? I doubt CtCARE has an expert thoracic medical oncologist on staff reviewing the information. If there was, rather than writing this note, I would be enjoying the support of my family on the eve of my first treatment. The official process through the Commissioner's office now begins. Precious time has been wasted. I have no idea how long this process will take. This whole experience with CTCARESLESS has been maddening. I don't want to start treatment without the Avastin and why should I, it is FDA approved, and is listed in the National Comprehensive Cancer Network (NCCN) Guidelines as a standard of care for Stage IV nonsmall cell lung cancer. This fight is not over and we will not hesitate to go to the media. Sadly, I have not heard from the attorney general's office or any of the other legislators, including our governor, whom I sent a copy of the letter I submitted with the appeal. I enclose the letter here for you all to read. Any suggestions are welcome. Does CTCARESLESS want to be known as going against the recommendations of local oncologists and a Farber expert in the court of public opinion???? Who do you think the public would support?? I vote for me, a nonsmoking female oncology nurse practitioner who has dedicated her career to helping those with cancer. Thanks to all of you for listening! Here's the letter:
July 10, 2008
State of Connecticut
ATT: External AppealsP.O. Box 816
RE: Sharon Hines
CCI ID# 97011892802
Appeal: Preauthorization, Avastin
Dear Sir or Madam:
I am Sharon Hines, a 52 year old nonsmoking female. I was diagnosed with Stage IV adenocarcinoma of the lung in April of 2008. I am also an oncology nurse practitioner and for more than thirty years I have dedicated my career to caring for people with cancer. I know all about lung cancer, its treatment and outcomes. I write this letter in response to the Connecticare denial for coverage of Avastin as part of the recommended FDA approved standard of care for chemotherapy for my type of lung cancer.
As part of my initial work-up, my local oncologist, Susanna Hong MD, referred me for a second opinion at Dana Farber Cancer Institute (DFCI) on May 5, 2008. I discussed my options with Dr. J. Paul Marcoux, a thoracic oncology specialist. Those options included standard chemotherapy with a platinum based therapy with Avastin or participation in a DFCI clinical trial using Tarceva, a targeted therapy, as first line therapy. The trial was designed specifically for previously untreated nonsmoking females with advanced adenocarcinoma of the lung. Current guidelines recommend Tarceva as 2nd line therapy, but across the country, clinical trails are underway to evaluate it as a first line therapy. Furthermore, phase III trials of Tarceva have shown that female nonsmokers had improved outcomes.
As a targeted therapy, Tarceva is taken orally once a day and the side effects are for most people, manageable with minimal impact on quality of life. Because my disease is confined to my chest and because I had an optimal performance status, Tarceva was considered an excellent option for my unique situation. I decided to pursue Tarceva as my initial therapy. We then discussed that it might be possible to receive authorization from Connecticare for Tarceva as first line therapy and take the drug off study. If not approved, I would then enroll in the clinical trial at DFCI. Connecticare authorization for Tarceva was approved in one day with no questions asked about it being given as first line therapy.
I have now completed two months of treatment, the time in which response should be evident or not. I was found to have “some mild but clear progression” on my recent cat scan of the chest. Treatment options were discussed with both my local oncologist, Dr. Hong and Dr. Marcoux, from DFCI. We discussed starting standard therapy with Carboplatin, Taxol and Avastin. My performance status remains good but I do have mild symptoms of fatigue, pain, dyspnea on exertion and nonproductive cough. My appetite is good and my weight is stable. My disease remains confined to my chest. I have no evidence of metastatic disease beyond my lungs. As you may or may not know, individual patient characteristics also influence survival. The most important is performance status.
After giving Tarceva an adequate trial, Dr. Marcoux discussed my overall status as a positive factor to gain the most benefit from chemotherapy. I don’t want to let this window of opportunity pass while I am feeling well enough to tolerate the side effects of chemotherapy. In addition, Dr. Marcoux, feels my “best chance of response would be to initiate traditional cytotoxic chemotherapy with Bevacizumab” (Avastin) at this time. Chemotherapy can reduce tumor size and alleviate symptoms which results in improved quality of life in addition to improved survival. As a 52 year “young” woman, I hope you can appreciate that extended survival is of the utmost importance to me and my family.
Living with Stage IV lung cancer is difficult enough without having to fight for my right to receive a FDA approved National Comprehensive Cancer Network (NCCN) standard of care treatment for Stage IV lung cancer with Carboplatin, Paclitaxel, (Taxol) and Bevacizumab (Avastin), (PCB). This combination has shown statistically significant improvement in response rate, progression free survival and median survival when compared to Carboplatin and Taxol alone (ECOG Trial 4599). I am a perfect candidate for Avastin as I qualify 100 percent based on the criteria required to receive it i.e., nonsquamous cancer, no brain metastasis, no hemoptysis, no anticoagulation, and no serious heart disease or hypertension.
I feel it is my right as a member of Connecticare, an oncology nurse practitioner, and now as a patient myself to advocate for my own care. As someone who has spent a lifetime career advocating for others, I ask that you afford to me what I have so unselfishly provided for so many others when they were at their most vulnerable.
Sharon L. Hines MS, APRN, AOCNP
cc: Governor M. Jodi Rell
Attorney General Richard Blumenthal
Representative Gail K. Hamm
Senator Thomas P. Gaffey
Congresswoman Rosa L. DeLauro
Office of Healthcare Advocate, Maureen Smith
July 17 2008
I just reread my update and realized the treatment plan was not correct. My treatment is 6 cycles, so one treatment every 3 weeks x 6, so treatment will be for 4 and 1/2 months. One day at a time.....
Talk to you later,
Wednesday July 16, 2008
HAPPY BIRTHDAY SHIRLEY!!!!!!!!!!!!!!!!!!!!!!
Quick update, the insurance commissioner has the appeal info and we should know in 3 days what the decision will be. They have lots of info supporting the use of Avastin, so I am hopeful.....
I met Dr. Dailey today at the Gray Cancer Center in Hartford, very nice man, has a sense of humor and "wicked smart" (as some of the Hartfiord Hospital employees were tellling me.) My first chemo has been scheduled for next Wednesday. Chemo days will be long days, but the first one takes the longest, about 6-6 and 1/2 hours. The treatment will be once every 3 weeks for 6 weeks with a cat scan halfway through to check response and then I go once in between the 3 week schedule for bloodwork. The good news is I will always have Sue to bring me home since she works across the hall. So, those of you who have offerred rides, I will be calling for rides to get there. Thank you!
In preparation to lose my hair from the chemo, yesterday I got the shortest haircut I've ever had in my life (thanks Kelly), if I have an inch left on my head that's a lot. I think I got the Jamie Lee Curtis look going, Ralph and Jared aren't saying too much.....
Love to everybody
July 12, 2008
July 12, 2008
Good afternoon everyone. I went to Boston on Monday. Shirley and Theresa joined Ralph and I for the trip, both such good company and support. Met a wonderful nurse, Kitty who spent a lot of time with us. Thank you Kitty, patients and families are fortunate to have you on their team. My cat scan shows some mild progression and after much discussion with Dr. Marcoux, I have decided to go on chemo. Unfortunately Connecticare has denied Avastin, one of the newer drugs given along with standard therapy that has been shown to increase response rate and survival. I was very angry, ( yea, me, can you believe it?) and we are now in the process of appealing to the State of CT Insurance Department. It’s bad enough to have cancer, but to deal with denials from the insurance companies sent me over the edge. And what’s really sad, is this happens to patients every single day. Many of them don’t have the resources, energy or the fight in them to pursue it. I’ll keep you posted.
On Wednesday, I had a power port placed in my left chest which will be used for chemo access. Will find out later this week when I start. I do have to wait to heal before starting on the Avastin but not the other chemotherapy agents. I’ve also decided to change to another oncology practice. Connecticut Oncology has been wonderful to me and I thank everyone there for their care and support. I’ll be meeting with an oncologist at Hartford on Wednesday.
Rosie was up for a couple of days, we went to the mansion here in town to listen to the weekly concert, wrong day, it was the night before….oops. So we sat out on the sprawling lawn and enjoyed the beautiful surroundings and weather. Did a road trip with Rosie, Joyce, and Theresa on Friday. I felt well and so enjoyed their company.
A few new pictures from Boston and of Clifton should be on the website. Love hearing from all of you! Thank you.
Friday, July 4, 208
July 4, 2008
This was a very sad week. Our cat, Clifton, our only pet of 12 years had to be euthanized Thurs eve. Over the last 2 weeks he had not been eating and spent day and night hiding out under the couch. He was found to have acute renal failure and our vet recommended we euthanize him. Some of you may know that I believe Cliff was the first one to know I had cancer. During the winter, he would sit on my lap in the evening, like always, but then he started crawling up on my chest and would sniff me all over. I thought it was odd, but I did recall reading at one time that dogs and cats can detect cancer and so I was very vigilant about doing self breast exams, but never found anything worrisome and then my annual mammogram was negative, so I didn’t give it much thought after that until I was diagnosed with lung cancer. Over these last 2 ½ months that I’ve been home, Clifton had been a great comfort, especially on those nights I didn’t sleep well. We spent a lot of time together in the recliner. We’ll miss you Cliffy!
Will let you know what happens after our trip to Boston on Monday.
Love ya all,
Friday, June 27, 2008
Don't forget to check out the new photos that have been added to the album. There are more from the wedding,
P Town and Annisquam. Also, there are pictures from the pizza party that Radiation Therapy threw for me. Enjoy.
Friday, June 27, 2008
Hi Everyone, again, thank you for all the support and encouragement. I love hearing from all of you!
Our trip to MA was a wonderful surprise. We hadn't spent time in the Gloucester area before and found the neighborhood of Annisquam where we stayed in a beautiful home to be another magical place. The beach was a 5 minute walk from the house and overlooked the Annisquam lighthouse. We traveled to Crane Beach, a 2 mile long beach on the North Shore, also another great spot, thanks to Wendy for letting us know about it. Rosie and Barbara are great cooks and we ate and drank like royalty. I had a cat scan before I left, and the initial reading looked like the cancer had gotten a little bigger. But after many phone calls and further review, it is believed to be stable. I will have another cat scan next week and head to Dana Farber on July 7th. While we were waiting for review of the films, I was considering my other options which are to go on IV therapy with or without chemotherapy. It was an emotional roller coaster and in between tears, we were able to have quite a few laughs, mostly at Rosie's expense. That's why I bring her along. There were no interventions performed this trip, but had the trip been any longer.....I don't like to mention any names but a couple of them came pretty close.
Overall, I have good days and not so good days. I do have some fatigue and as long as I pace myself and rest every afternoon, I get done what I want too. The dry cough is about the same, sometimes very little, other times more so. I am walking (slowly because I get a little short of breath) everyday that it's not humid. The pain is controlled. Now that Ralph is back to work, I've made time to participate in some complementary therapies. I have attended the meditation classes given by Dennis McCann, the hospital chaplain (and a very cool guy) and have found it is one way I can stay in the present and not think about the future. As many of you know, one of the hardest things for me has been knowing all that I do about lung cancer. Ralph says I need to hit the delete file button. So I work on it regularly. On a lighter note, Ralph attended the class with me yesterday for the first time, and about 5 minutes into the meditation, I hear his breathing get heavy and sure enough , he fell asleep, at least he didn't snore. It was pretty funny. I'm also listening to some guided imagery cds (thanks Susan) and will be taking the yoga class at Middlesex Hospital. I had a reiki treatment this past week too and found it very relaxing. Today I head to Westerly Beach with Shirley, Sue and the rug rats. It's sure to be a good time.
My love to all of you, thanks again for your prayers and support.
Tuesday, June 17, 2008
Rosie, Ralph, Barbie, Ed and I are heading to Gloucester for a few days. Here’s comes the "Perfect Storm." A big thank you to Radiation Oncology and their extended staff for the awesome pizza and tattoo party last night. You guys rock!! Congratulations on the 100% attendance rate. You never saw that happen at a staff meeting, but as Rosie says, there wasn’t any booze at the staff meetings. Rosie wants to be sure future gatherings are coordinated around her schedule. She does get to be a bit much, doesn’t she?? But I do love her! And a special thanks to Susan D for her visit yesterday and the restorative yoga session. How relaxing and helpful. It was so nice to see you!
This message is from me…it was so great to spend time with all of you last night…and a big New Jersey thank you for taking such good care of my best friends….there was a lot of love going around and a fair share of B.S….I loved both…love rosie Exit 105, Isle of Man
Monday, June 9, 2008
June 9, 2008
Hello everyone! The wedding was a blast. There are some pictures posted already on the website, thank you Sue! Theresa and Nick, the bride and groom are very sweet and very funny. Despite the heat, they looked cool, calm and gorgeous. Emily, Kyle and Avery, and this other little guy Jake, all members of the bridal party were as much fun to watch as the bride and groom. So the wedding and reception went off without any major catastrophe, that was until I left with my dear friends Ruth and Bobby who offered to drop me off at the hotel as I was a bit tired from all the festivities and didn’t want to drag the Streetos and Denkers off the dance floor. We plugged the address into the navigator and took off for the hotel, just 10 minutes away. As Bobby rounded the corner, the hotel was on our left, and after missing the front entrance, he pulled into the side parking lot and walked me to the door. My room key didn’t work in the outside door, but fortunately someone was coming out and let me in. We said goodbye and off I went down the hall to the lobby. As I started walking down the hall, I thought something is not right here, and once I got to the lobby, I knew I was at the wrong hotel. By now Ruth and Bobby had already left. They would not even know this happened until Shirley spoke with Ruth later the next day. I had no cell phone and no money. I actually thought this was hysterical, and could not stop laughing. Ruth, I know you’re always cranking I don’t pay you enough for this job, but really, leaving me, in the middle of nowhere without any means was over the top don’t you think???? . This was another life adventure that will always make me laugh. I’ll never forget it and you can bet I won’t let Ruth and Bobby forget it either!!
So to finish the story, a young man arrived at the front desk and when I explained my situation, he called to my hotel which was just around the corner to see if their shuttle was still running—no, it was not. He discouraged me from walking even though my hotel was close by because it was very dark out and the street was not well lit. I then used his phone to call Ralph, and then Jared, but got no answer. Eventually he called the reception hall where instead of Ralph from Table 1, they put the bride on the phone. She did not see any of my family. I then tried Sue’s cell phone and her husband Mike answered, "Where the hell are you?" He arrived within minutes. Sue was back at the hotel knocking on my door, thinking I was in the shower. Ralph, Jared and Lauren were clueless and didn’t seem to think it odd that I wasn’t in the room. Oh well, what’s a wedding without a little drama. Leave it to me to make it happen!
I hope you’re all surviving the heat wave; it definitely affects my breathing so I’m chilling out in the house, having fun going through old pictures and organizing them. My facial rash has recurred, not as bad as it was initially, so I’m back on the antibiotic 1xd.
Rosie arrives next Monday and we’re planning some day trip stuff over the course of the week with Barbie, the other Jersey Girl, and her husband Ed. When this group gets together, there is usually an intervention needed before long. I wonder who it will be this time, Rosie???
Thanks again for all the messages of love and support, you make my day!
Friday, June 6, 2008
June 6, 2008
Hi gang! Jared is feeling much better. He’s having
his echo today and some repeat blood work. No further
chest pain episodes.
My sister Shirley’s stepdaughter, Theresa, is getting
married tomorrow in MA with a reception to follow in
RI so we are all looking forward to a really good
time. Sue’s kids, Emily, Kyle, and Avery are in the
wedding and I can’t wait to see them in action. We’ll
post some pictures on the website.
I know many of you have enjoyed reading Ruth’s
commentaries and want to know who she is. I met Ruth
in 1980 when I worked for the 1st ever Hospice in
America, the Connecticut Hospice. Ruth was one of the
“seasoned” homecare nurses, caring for people in their
homes long before there ever was the building in
Branford. I know that makes her sound ancient, but
really she’s not, just a few years older than me. Not
only did she become a wonderful friend, but she’s the
person who taught me everything I needed to know about
caring for hospice patients. It was Ruth who
encouraged me to apply for the nurse manager position
at Middlesex when they were planning their hospice
program. Some of you may remember she came and did an
inservice for us in those first weeks the unit was
opened. She’s married to Bobby, a retired police
chief and they have 3 sons who followed in Dad’s
footsteps and became policemen. Bobby took pictures
at our wedding and I see a couple of them have
surfaced on the website. And when Jared was a
screaming infant and his parents were sleep deprived
and ready to return him, Ruth took him to overnight
camp at her house so we could get a full night’s
sleep. Now that’s a friend!
I had a CXR on Wednesday which did not show any
change, I think that means there’s no more fluid
accumulation which is a good thing. The rash is
nearly gone, I haven’t had to wear any make-up for
several days, but it is something that can flare
again. I’ve been sleeping later in the am, so unlike
me, but that’s okay, I actually stay up later now that
I don’t get up for work…. Have a great w/e everyone,
sounds like the place to be will be the beach. Talk
to you soon.
June 2, 2008
June 2, 2008
Hi Gang, we did not make it to NJ on Sunday. Jared
ended up with a wicked case of tonsillitis and started
on Augmentin and Motrin. He had chest pain that woke
him up from a sound sleep early Sunday morning. He
was also feeling short of breath and when I saw that
his nail beds were dusky, I got a bit nervous. Off to
the ER we went via ambulance where we spent the next
41/2 hours.... His temp was 101.7, O2 sat was perfect
and the chest pain had subsided before we got there
but while there he did have another episode. His
cardiac w/u was negative but it’s still not clear why
he had the chest pain so he will be having an echo
this week. The consensus is this may be mono, even
though he tested negative, it may be too early in the
disease for it to be positive. He’ll be rechecked at
the end of the week. His temp has been down for the
last 24 hours and he does feel better, but very tired.
I’m tired too, but otherwise okay. The other day
Shirley and I hit the garden center and last night I
put some flower pots together. Ralph sets up a
makeshift table for me on the patio and I make a real
big mess. It’s great therapy. Don’t you just love
the new website, Sue you are amazing, I don’t know
where you find the time…..we love you so much and
appreciate all you do for us.
My love to everyone,
Saturday, May 31, 2008 2:15pm
Due to Sharon's overwhelming popularity we have created a new website. I know, I know, just when you learned how to use this one. The new one is easy, I promise and it allows us to have up to 300 photos, and it allows you to attach a photo to the guestbook.
Sorry to have to due this, but you only have yourselves to blame for loving my sister so much! The new website is www.simplesite.com/sharonhines
Because I love her so much, I transferred every entry from this website to the new one.
Thank you for your kindness and loving support.
Friday, May 30, 2008 10:09pm
Sorry, I hit the save button before I was finished yacking. Ralph and I have been able to enjoy the beautiful weather and spent some time down the shore cruising through our old neighborhoods yesterday--Stony Creek, Leete's Island and Sachem's Head. I do love hanging out at the beach. We also had our first bonfire of the season on Wednesday night. That same day there was a bluebird on the deck post. He hung out there for a while so we were able to get a good look at him. So, yes, we are enjoying the weather, nature, each other. This time together while Ralph is on his summer 6 week lay off is one of many blessings that have come our way. Along with all of you.
We're heading to NJ, Exit 105 on Sunday and will be visiting with Rosie and her family, back on Monday. I'm sure I'll have some good gossip for you--you know, 'Jersey girls gone Wild.'
Love to all,
Friday, May 30, 2008 9:38pm
Hello to all my wonderful people. First, welcome back Ruth, we have missed you very much. Glad your feeling better. I'll cancel the 'Where's Ruth' posters.
Relay for Life was a wonderful event. I did not stay for the luminaria ( I couldn't bare to see Rosie go up in flames) but I don't live far from the high school and I can see a glow in the midnight sky. It's beautiful. Thanks to all the staff at COG and to my family and friends who teamed up in my honor. It was great to see you all and those that weren't able to make it, I know you were there in spirit. Unfortunately, Jared was home with a fever, sinus symptoms and body aches and Ralph stayed with him, so they weren't able to attend. Not sure if Jared has a sinus infection or possibly Lyme disease, he's been doing a lot of hiking since he's been home.
Peg, (Exit 100B), my sister Shirley is still laughing at your vivid description of my visit to your home in NJ with Barbie. She especially loved the part about the platypus walk. It was a great time even if I had to spend the next day in rehab. I know you won't believe this, but I haven't had a martini since. 'Hello, my name is Sharon and I'm an alcoholic,' oops, wrong website.
Saturday, May 24, 2008 2:44pm
Hello everybody, I see some of you have lost your minds while I've been away (Rosie). I must say, a human torch will certainly get the attention you crave, you are a whack job!! And one I love dearly. For those of you who don't know Rosie, we went to nursing school together and have shared many life experiences over the last 35 years. She lives in NJ, exit 105 and even though she has been traveling to CT for 35 years, it's only been in the last few years that she has been able to find her way here. To this day, whenever she leaves NJ, we have a pool going as to what town she'll be calling from looking for directions. No one makes us laugh the way you do RoRo. We love you!!
To Pat and the staff at Connecticut Oncology, thank you for honoring me at Relay for Life. I am very touched by your thoughtfulness. I look forward to seeing you there.
Our getaway to RI and the Cape was great. Having Jared home is a lot of fun. No family feuds! Thank you for spoiling us Shirley.
I'm feeling pretty good. The rash is settling down as expected. My energy is holding up, though I can nap at the drop of a hat. I have been able to get out and walk most everyday. I have much to be grateful for including all of you. It's great to hear from everyone, thank you for thinking of us!!
Friday, May 16, 2008 2:47pm
Hello to all of Sharon's fans. I just wanted to take a few minutes to thank those of you who have made a donation to CaringBridge. It is truly appreciated, but please don't feel obligated to do so. This website allows us to stay in touch with so many people, for that we are thankful. Your kind words, encouragement and love are all she needs.
Speaking on behalf of our entire family, I want to thank you for supporting Sharon, she means the world to us and it is obvious how much she means to all of you. She is surrounded by so much love and I thank you for loving her as much as we do.
Thank you from the bottom of my heart. Sue
Friday, May 16, 2008 1:08pm
Hello everybody. I have been on Tarceva for 1 week and I am tolerating it well. One of the side effects is a rash on your face, scalp, chest/back (rash is an indicator of possible response) and by day 4, I noticed a facial rash that has gotten progressively more so each day-yeha! It's treated with oral and topical antibiotics and lots of moisturizer and cover-up. I have to be careful in the sun, lots of sunscreen, big hat, umbrella at the beach etc. My next Cat Scan will be in about 5 weeks.
Ralph, Jared and I will be away for several days next week. My sweet sister Shirley and her husband, Michael Ferragamo (no relation to Ferragamo shoes, damn!) have offered us their Westerly home and then booked us at a resort on the Cape for the end of the week. We haven't been away as a family in several years because Jared was always in school or working. We're all looking forward to it, but what's vacation without at least 1 family feud, I'll keep you posted...
I have so much to be grateful for, so many incredible family and friends whose love, support and laughter make each day a gift. Thank you all, you're the best.
Lots of Love,
Monday, May 12, 2008 7:08pm
Hello kids. Graduation was wonderful. Some of you may know Matt Marcella, who lived next door in our old neighborhood. Matt also graduated ROTC from UCONN yesterday. These 2 guys have known each other since they were 10 months old and got to walk together during the procession as well as sit together. Ralph and I sat with Matt's parents, Judy and Paul, Matt's youngest sister, Laura and Matt's grandmother, Mimi. I can't tell you how special this was for us to spend this day with the Marcellas. I can vividly remember the boys getting on the kindergarten bus 17 years ago and all I could think about was they just got off the bus for the last time. We are so proud of both of them. Rebecca
Lobo was the keynote speaker and was very entertaining and funny. She definitely lightened the prolonged ceremony which was somewhat unexpected. There were around 3000 graduates and not enough seats for them. The 10 minute procession ended up being nearly an hour. But it all worked out eventually.
Pictures will be posted soon. I leave that task to my sister Sue. Thanks Sue!
Today was rest up day for both Ralph and I.
PS Happy Nurses Week to all you wonderful nurses out there.
Saturday, May 10, 2008 8:15pm
We continue to love hearing from everyone. Thank you again for your support. I wanted to let everyone know my insurance approved the Tarceva and I started it last night.
It's a once a day drug and the majority of people tolerate it well. I'm planning to be in the majority.
Graduation activities get underway at 2 pm with a reception sponsored by the Communications Dept. Jared's class then graduates at 4ish. We'll take lots of pictures so we can post some new ones.
Happy Mother's Day to all you Moms (and a few 'Skirts,' I won't mention any names Ralph). Enjoy your day!
Ruth, you're telling too many secrets, I thought I was paying you to keep quiet.....you do make us laugh!
Love to everyone!!
Tuesday, May 6, 2008 4:44pm
Hi everyone. Our trip to Boston went well, other than the doctor was 2 hours behind. His nurse was out ill... we all know who keeps the office running don't we? Wendy, Ralph and I entertained ourselves in the waiting room. Next time we'll bring a deck of cards.
Dr Marcoux was an extremely kind, soft-spoken man who concurred that I do have Stage IV disease. He offered a clinical trial which they have only @ DFCI for nonsmoking women with adenocarcinoma of the lung. It involves taking Tarceva, a pill daily. Tarceva is what they call targeted therapy because it blocks tumor cell growth. It works well in people who have a mutation in a certain protein called epidermal growth factor receptor, AKA, EGFR. Tissue from my biopsy has been sent to check for this. If it is positive, I have a 70-80% chance of responding to this drug. If it is negative, the response rate drops down to 20-40%, which is more in line with what IV chemotherapy would offer.
My doctor here, Susanna Hong, who's taking such wonderful care of me, is investigating whether I would be able to get approval from my insurance company to take the drug without having to enroll in a clinical trial out of state. We should know more soon.
I must tell you how grateful Ralph and I and our entire family are to Wendy. She has been with us to Yale and Boston and has been the extra eyes and ears everyone needs when going on this type of appointment. There have been so many of you who have made this experience so much better with your love and support and we are humbled by your kindness.
We now look forward to Jared's graduation from UCONN on Sunday. Hip hip hooray!
Lots of love,
Sharon, Ralph and Jared
Monday, May 5, 2008 9:41am
Hi everybody! I have so enjoyed hearing from everyone, your words of inspiration, prayers and support really do make a difference. I'm feeling much better since starting on Toradol, very little chest pain now. Thanks Maren for getting it all started with your superb injection technique. I actually went for a walk this am and cut some lilacs from a site I've been hitting for years. It is a beautiful day out there and I hope you all get to enjoy it. We will be leaving for Boston shortly and I will update you all tomorrow. Thanks again for everything. You're the best! Love, Sharon
Wednesday, April 30, 2008 4:20pm
Sharon was experiencing alot of right sided back pain. CT scan showed there was a pleural effusion (fluid accumlating around her lung). She had a tap done to remove the fluid and over 350ml's was drained......no wonder she was in pain! She is sore and tired and was given orders to rest for a couple of days.
On Monday, Sharon, Ralph & Wendy are traveling to Boston to Dana Farber to see Dr. Marcoux at the thoracic cancer center. This appointment will discuss treatment options. Check back we will have another update for you!