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Happy New Year, everyone! I hope that you all started 2014 with laughter, gratitude and health. I have high hopes for this year and beyond. Last year was bittersweet. A year ago last month I learned that so much cancer had emerged, my doctors at Johns Hopkins had a hard time determining which organ to treat first. After a tough January/February in Baltimore and more radiation in late June, I was pretty sure my luck was running out. Then, by late summer, the tumors in my lungs were inexplicably stabilizing, shrinking, or falling off the radar all together.
I find it wonderfully helpful that Bruce Springsteen unknowingly follows my ups and downs with the release of his albums. Wrecking Ball was timed perfectly with the wrecking ball that hit me last winter (see my Feb. 25, 2013 post). This month Bruce released High Hopes, just as I try to manage my scan-xiety over the next set of scans at Johns Hopkins on February 7th.
My high hopes for 2014 are not just for me, but for all my Adenoid Cystic Carcinoma (ACC) brothers and sisters. As many of you know, ACC is a slow growing, persistent cancer that can either go to sleep, hide or grow aggressively at any time. For those of us who have experienced all three, we live life in the present, from one scan to the next. I'm cautiously optimistic that my unique status as a bone marrow transplant recipient will prove my theory as to why things turned around for me (see my Sept. 14, 2013 post, N=1). But for other ACC patients, this is not an option.
Since ACC is so rare, it is vastly underfunded. The fastest, most effective way to stop this unrelenting disease (people commonly fight for decades) is money. Well, it just so happens that the Adenoid Cystic Carcinoma Research Foundation, ACCRF is holding its annual fundraiser in the Boston area on March 8, 2014. ACCRF is making incredible strides toward finding a cure. They are working with the NIH, building scientific research boards and establishing global research agendas. The event will be one for the record books and I'm really looking forward to it. Please visit my fundraising page to learn more about the event and make a donation.
Last year I joined an online discussion site through the Adenoid Cystic Carcinoma Organization International
(ACCOI) -- sister organization of ACCRF -- an all volunteer group that sponsors a global community of ACC patients
who share information and support. Before joining this group, I found
very few ACCers on my own. I didn't really know about the experiences
of having ACC first appear in the head/neck, where cancer can start in
any gland in the face, neck or throat and travel from there.
Some of
the people I've met online have gone through, or are currently managing,
unthinkable obstacles. (Since my cancer started in the breast, I was
spared a lot.) I've never seen a group of people hold each
other up, push each other forward, and offer advice and experience that
cannot be found anywhere in the medical community. From Malaysia to
Switzerland, China, Australia and all over the US,
these people are wise beyond words, inspiring and unthinkably brave. Prior to the fundraiser
there will be a patient meeting, where everyone can meet each other and learn of the latest research. After 13 years, I will finally attend a meeting with others who understand the issues I've faced battling a cancer that few doctors have even heard of.
I'm very hopeful about this year. We're getting close to finding a cure, I can feel it. The ACCRF is making incredible alliances with researchers all over the world and I'm excited to see what comes of the exploding world of genomics in medicine. I was not so hopeful this time last year. I was nervous about living alone, upcoming treatments with unknown side effects, and my failing attempts to train my cat to be my personal assistant. That last one hasn't changed, but today at least, I'm in a good place. Signing up for satellite radio with the 24 hour Springsteen channel -- E Street Radio -- was also good for my psyche.
Looking forward to all good things.
Kathy
CANcer + HEALth = CAN HEAL
As I watch the leaves turn bright autumn colors, I can't believe it's November. This time of year marks a series of milestones for me. Since 2000, it seems that September and October are the biggest months for cancer diagnoses, relapses and other really bad news. In the last year or so I went through a downward spiral involving my original diagnosis, Adenoid Cystic Carcinoma of the Breast (ACCB). A few weeks ago I went to Hopkins for a cryoablation on a growing metastatic lung tumor, which I spoke of in my last post. Cryoablation differs from radiofrequency ablation in that it uses gas to form a ball of ice that freezes the tumor rather than burning it. The procedure went great, but since the pleura is made up of lots of nerve endings, I have varying amounts of pain in my right shoulder, wrapping around to my chest. It's very similar to the pain I still have on my left side from the lung surgery in August 2012, so at least I'm balanced!
Aside from this one tumor, I received unexpected good news in mid July: Somehow, several more tumors in the pleura slowed to a crawl, leaving me with a surprising case of cancer-roller-coaster-whiplash. Now, with the cryoablation out of the way, I have a reprieve from any more medical drama until the next set of scans in mid January.
This luxury allows me to reflect on the biggest milestone of all. November 17th is the third anniversary of my stem cell transplant for Acute Myeloid Leukemia (AML) and the birth of my new immune system (and if my theory is correct, the reason for the recent slow down of ACCB). I remember the Thanksgivings I spent in hospitals, the setbacks, the delays for returning back to work, the life threatening infections and brutal medications. But now that I'm able to experience the beauty of this season as an AML survivor in remission, it seems like a lifetime ago.
Every Saturday, as I speed my way through Maplewood trying to get to the recycle center before it closes, I pass the Fire Department with a sign on the lawn that says, "It's In Their Blood." It's such a great double message; I would always smile to myself and make a mental note to stop there one day to explain why. Today I stopped and rang the front door. It is well documented that many men and women in civil service professions such as firefighters, police officers and the military are donors for stem cell transplants (also referred to as bone marrow transplants since stem cells create bone marrow) through the Be The Match registry. The two men who opened the door were no exception. After thanking them and their fellow firefighters for joining the registry, they said that it's just part of what they do. I said that because what they do is "in their blood," it's now in my blood too, quite literally. Since I have never received a response from the letters I wrote to my donor, it felt good to share a little gratitude with others whose generosity may someday save someone's life.
Since my season of milestones is also the season for giving thanks, I've been thinking about the many things we take for granted and how easy it is to forget to be grateful for the basics. I do it all the time. I'm so happy about the big picture, I often forget about the much smaller picture -- getting one's body to do what it's told to complete the simplest of tasks. I just finished reading an amazing book, which I learned about from Jon Stewart (I never miss The Daily Show on Comedy Central). It's called The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida, published in 2007, translated from Japanese this year. This is one of the most profound books I've ever read. Barely over a hundred pages, this 13 year old boy made me think about every aspect of life in a new way. His pain, love and purity of heart stopped me in my tracks. The book explores a series of questions to help the world understand what it is like to be autistic: "Why do you ask the same questions over and over?" "Why don't you make
eye contact when you're talking?" "What is the worst thing about having
autism?" and "What's the reason you jump?"
During this amazing season of nature's transitions, one question seemed especially relevant: "Why do you enjoy going out for walks so much?"
When
we look at nature, we receive a sort of permission to be alive in this
world, and our entire bodies get recharged. However often we're ignored
and pushed away by other people, nature will always give us a good big
hug, here inside our hearts.
I don't have any kids. I don't even know anyone with an autistic child. But I don't have to in order to appreciate the magnitude of this boy's challenges and wisdom. As we move through this time of gratitude and Thanksgiving, let's all celebrate the milestones and give each other a good big hug.
Kathy
CANcer + HEALth = CAN HEAL
I've never been good with math. Algebra and geometry were dreaded subjects. I picked my college major based on how few math and science classes I needed to graduate (sociology). When I got to graduate school, there was no avoiding statistics. I honestly thought I had gone to hell.
You may recall in a recent post I described how, after a year of bad news after bad news, an RFA procedure that was scheduled for July 17th was cancelled at the very last minute. The numerous lung tumors, old and new, that were detected on a scan in early June were either shrinking or no longer active, and Dr. Hong felt that there was nothing problematic enough to treat. This was a mind-blower, to say the least. The prior seven months had been a race to keep up with the increasing speed of the Whac-A-Mole treatment plan my team and I put into place. Since then I have been straining my non-scientific brain to come up with how this reversal of fortune could have happened. I was thrilled, grateful and confused all at once.
Several people told me not to question what seemed to be a miracle. I'm of the mind that the word "miracle" is overused, and I wasn't quite ready for that conclusion. One thing I've learned is to expect the unexpected. Another bad scan and there goes the miracle. But those that said it was the hand of God had a point. I knew that a lot of people have been praying for me for a very long time. I've been praying quite a bit too, believing strongly in this power. How can I not, after everything I've been through? But something told me that there's more to it.
I looked for something that would clinically explain how the cancer not only slowed down, but took an about face. I decided to wait for the next scan to test my long shot theory, and yesterday I got the confirmation I had been hoping for. The PET/CT showed only one "hot" spot in my upper right lung, and nothing else that looks like cancer! I went over my list of body parts that have been treated since January:
- right hilar lung tumor in a very dangerous spot, treated with RFA and later with radiation -- check!
- right kidney tumor, treated with cryoablation -- check!
- left rib tumor, treated with one big dose of radiation -- check!
- a bunch of new and old lung tumors, growing in the lining of both lungs (planned to treat with RFA) -- except for the one hot spot, all stable, shrinking or no longer active!
Dr. Hong actually said I was "nearly disease free." My cousin, Karen, was there as a witness. I told him of my long shot theory and he agreed that it made sense. Here it is:
I've written a lot about graft vs. host disease, or GVHD -- the rejection process that occurs when someone gets a stem cell or bone marrow transplant from a donor. GVHD hit me hard almost immediately after my transplant and kept knocking me down for 1.5 years. The good news is that having my new immune system fight me, the host, meant that it was also fighting the leukemia, a process called graft vs. tumor. So far, science has shown that getting a transplant for a blood cancer usually never works for also treating a solid mass cancer in the same person. Usually never. My theory is that graft vs. tumor is giving both leukemia and ACC a
smack-down. This is the only clinical explanation for what is
happening.
Adenoid Cystic Carcinoma is a very rare cancer, afflicting only 1,200 people a year. Leaving aside the very few patients like me, who have this initially appear in the breast, I haven't found anyone with ACC who has also had a stem cell transplant from a donor. N=1.
On the other hand, why did this smack-down only start this summer when my transplant was 2.5 years ago? I was on steroids and other immunosuppressants for the first 1.5 years to treat GVHD. My immune system couldn't even ramp up to normal until these drugs completely left my system. Plus, ever since the transplant, I take a really long time to heal. I'm still suffering from Post Thoracotomy Pain Syndrome from the lung surgery I had 13 months ago.
Yes, the scan
yesterday wasn't totally clean, but I'm a long way from where I was
earlier this year. (I'll have a cryoablation on the hot spot sometime
before the end of the year. There's no urgency.) Even if graft vs. tumor doesn't shut down Whac-A-Mole long term, my experience still shows a smack-down. The evidence supports the theory, regardless of what happens in the future, and I plan to share it with the researchers of the ACC clinical trials and anyone else who will listen. I'm convinced that there is a connection between ACC and treatment(s) for Acute Myeloid Leukemia. Maybe this connection will lead to something, anything, that might contribute toward a treatment for a group of people and their families who are going through unthinkable suffering.
Although my doctors all agree with my theory, none of us saw this coming. Not with my history. Enter, the power of prayer. I
believe that prayer allowed graft vs. tumor to fight the huge
amount of cancer that was found over the last year. Science and faith are not mutually exclusive.
N=1 is not as lonely as it sounds. It's actually simple but powerful math, inspired by simple but powerful prayers.
Kathy
CANcer + HEALth = CAN HEAL
Ever since my stem cell transplant in late 2010, I've thought of medicine as science fiction. These days, it's hard to even fathom what is taking place. I still can't believe that my blood and bone marrow belongs to someone else, and that my donor's DNA is coursing through my veins. That entire experience still blows my mind.
But, as we all know, I'm now fighting on a different battle field. For the last 14 months I've returned to Cancer World, circa 2000, when I was first diagnosed with a rare head and neck cancer that appeared in a gland in my breast (Adenoid Cystic Carcinoma of the Breast or ACCB). My latest battles began in June 2012 with more tumors in my lungs, kidney and a rib, with treatments ranging from surgery, radiofrequency ablation (RFA), cryoablation and radiation. Then, in July, I had an about-face and a CT scan revealed that several lung tumors were shrinking or just going away. I'm trying not to obsess on the results of the next PET/CT on September 13th, but I'm sure you can guess how that's going.
In the meantime, I've been continuing my quest for answers. The Human Genome Project began 10 years ago, and the research to predict a person's predisposition for illnesses based on genetics has exploded.
The last decade has revealed the transformative power of using
genomic information for the diagnosis and treatment of cancer.... Determining the presence of
specific genomic variants also avoids the implementation of ineffective
treatments.
In 2009, just before I was diagnosed with leukemia, a Swedish study found that a fusion of the MYB and the NFIB genes cause ACC (regardless of whether is occurs in the head/neck or the breast). Since then, targeted therapies have been developed and several more are in the pipeline. Targeted therapies are not chemotherapy. They are agents that attach to receptors on
cancer cells and turn off the growth, some even kill the cells. A few clinical trials have emerged for these drugs to treat metastatic ACC, but participation can mean significant travel expenses and harsh side effects, making travel even harder. It's a huge commitment to receive treatment with a study drug that is so new (no trials for ACC are more than two years old) and unproven.
Enter: Tumor Profiling. Because of the advances of the Human Genome Project, the price of genetic testing has been driven down. Cancer patients can now submit slides of their tumors (made during surgery when the pathologist determines a diagnosis) to an outside company to be tested for genetic abnormalities. The results not only tell people what cancers they are predisposed to, but what clinical trials are available for those particular cancers. A person can then decide which trial is likely to work, rather than just hoping that they choose the trial with the right drug that might save them.
As a friend recently told me, "Forget everything we knew about cancer treatment and research prior to ten years ago. Everything will now be based on a person's specific genetics. This is the future of medical science." He's right. The research I did on private companies identified by the Adenoid Cystic Carcinoma Research Foundation (ACCRF) does not pertain just to ACC patients, but to ALL cancer patients:
Foundation One -- They test for 236 known cancer genes. The cost is $5,800.
Personal Genome Diagnostics: They have two tests. One tests for 120
cancer genes. This test
is $4,800. The other test is for 20,766 cancer genes and is $12,500. They are associated with Johns Hopkins in Baltimore.
Oncopath: They test for 159 genes. They wanted me to tell them which genes to test for, after which they would give
me a quote.
Since research on genetics is happening so fast, I decided to wait to have my tumors profiled so that the test I choose will capture as many cancer genes as possible. It only takes a few weeks to get the results from these companies. All three have very nice staff and offer assistance with insurance coverage. For many cancers, genetic testing is covered. But the latest research on ACC and the need for genetic testing is so new, my best outcome would be to try and have this expense covered with out of network benefits.
Another newly discovered resource in my world is an online support group associated with the Adenoid Cystic Carcinoma Organization International, ACCOI. This all volunteer organization is incredibly helpful for ACC patients. Over 1,400 people have joined the patient website, sharing their experiences, support and suggestions. ACC is horrific because it is so rare and misunderstood. It doesn't behave like most head/neck cancers and for me, it's not classic breast cancer either. It's its own beast and because no known chemotherapy works, it's incredibly hard to find doctors who understand what it is, especially in remote parts of the world. This group is to me what Facebook is to so many others. I've "met" people from around the world and learned a wealth of information. I even learned of four other people who have metastatic ACCB. (You may not think that's a lot, but it is.) I also learned of some very interesting connections between ACC and the Acute Myeloid Leukemia I had. I'll save that for another post. I have yet to find anyone on the site who has had a stem cell transplant. As far as I know, I still hold the world record on that one.
As I face this next set of tests, I'm somehow comforted with all this new and overwhelming information. I feel like I have more tools, more weapons and more soldiers who are fighting at my side. I think that the old paradigm of taking decades to bring drugs to market has changed. This is hopeful for all patients with serious illnesses who are running out of time.
Genetic testing is no longer limited to familial connections. It goes way beyond baldness and eye color. No matter how much it looks like science fiction, genetics is providing a road map for survival, a road map for cures. It's all in the genes.
Kathy
CANcer + HEALth = CAN HEAL
I have a confession to make: I really don't like the summer. I blame the desert. Growing up in Arizona, one grows to dread the seven months of summer, April - October. Now that I've fled to New Jersey, I get cranky when a seven day heat wave blankets half of the country, leaving us all collectively miserable. Nonetheless, my spirits are high, not only because I'm listening to thunder usher in cooler temperatures.
The roller coaster of Cancer World took an unexpected turn last week. As I headed out of town last Tuesday, in 100+ degree heat with 70+% humidity, I headed to the Baltimore airport to pick up Mary, who was flying in from Pittsburgh to be with me for one of an estimated three RFA procedures this summer. I wasn't sure exactly which tumor Dr. Hong would go after, or even which lung would be invaded. It didn't really matter because I knew that I had several tumors to Whac in this never ending game of Whac-A-Mole.
We arrived at Johns Hopkins Hospital on Wednesday at 7 a.m. By 9:15 I was finally rolled into the OR and prepped for surgery. Dr. Hong, ordered a CT to see just how things were looking and I waited to find out the plan. He appeared out of nowhere and said, "I don't see anything to treat!" Wondering if I was in an anesthetic stupor, I just stared. "How is that possible?" Dr. Hong said that several of the "hot" spots on the PET scan, only six weeks ago, have become smaller and some have disappeared. He said that there are still two spots in my right lung that he's watching, but the other spots were probably either scarring or inflammation from prior ablations or radiation treatments. He literally said the words, "Things look great!" This, of course, doesn't mean "disease free," but I'll take it. "Does this mean I can eat breakfast and go back to bed?" We agreed that I should return in September for another set of scans. I practically ran out of there and Mary and I celebrated over waffles.
We drove back to Karen's house, always Command Central for my Hopkins visits, packed up our bags, I dropped Mary at BWI where she took an early flight back to Pittsburgh, and I drove back home. Whether it was the heat or relief/gratitude/shock, I've been sleeping 10-13 hours a night since I got back.
What about that tumor on my rib I mentioned in my last post? A few weeks ago Dr. Hales called me and said that he decided I should only have one big radiation treatment to the rib instead of 4-5 smaller ones. This would be less risky if I need to have more radiation in the future. He had a last minute opening the next day, so on June 28th I did a same day round trip to Baltimore and got a blasting dose of radiation to kill the rib tumor. Thankfully, there were no side effects.
With a reprieve, however long it lasts, from the game of Whac-A-Mole, along with cooler temperatures, I guess I'm going to have to rethink my feelings about summer. Also, my friend Jim is doing great after his stem cell transplant. At the tender age of 70, he will soon reach his 100 day milestone and in Transplant World, that's a big deal. He started Maplewoodstock 10 years ago, a two day music bash in Maplewood in the spirit of Woodstock. Jim is an unstoppable bass player and I was so happy to see him at this year's celebration. Plus, another friend who had a PET scan the same day as my non-ablation, received a clean bill of health -- another huge relief. For those of us who live from PET scan to PET scan, or blood test to blood test, having a break in the action is everything. It's like a cool rain after a heat wave.
Kathy
CANcer + HEALth = CAN HEAL
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