Chemo is tough enough. Drab surroundings make it even worse! RoomsThatRock4Chemo is headed by Nancy Ballard. With some paint and talent, they create a vibrant,…
By Pat Wetzel
My friends at Driver just launched their Beta Program and given my past experiences I offered to share how a company like theirs would have helped me in my cancer journey.
A cancer diagnosis upends your life. For many patients “time is of the essence”. Access to doctors, second opinions and treatment options is critical. And so often, it’s so difficult to pull all of this together, particularly under the stress of the situation. This was certainly my experience.
Get comfortable. This is a story that spans nearly a decade and because I don’t have access to my medical records, a few dates may be slightly off, but they don’t impact the overall tale.
In June 2009, I was diagnosed with indolent lymphoma, Stage III or IV depending on bone marrow involvement.
Indolent lymphoma is a relatively slow growing type of blood cancer. Slow growing, until it isn’t, that is. Each year about 10% of the cases transform into a more deadly B cell lymphoma that can become rapidly fatal if not treated aggressively and in a timely manner.
The kicker is, even if the indolent cancer transforms and the aggressive form of the lymphoma is cured via chemotherapy or more likely, a donor stem cell transplant (studies show that the procedure has about a 30% mortality rate at 100 days post transplant), the indolent lymphoma can still come back.
Dr. Google gave me a median survival of 5 years.
I felt as though I’d just entered the medical fun house, an institution of mirrors not miracles.
I was simply in shock. Thankfully I was shocked into action, not inaction.
Because I had some time until I had to make a treatment decision, I hit the books. I read everything I could about lymphoma. I downloaded medical papers, sought out the thought leaders in the field and researched clinical trials.
I was interested in clinical trials because approaches like immunotherapy were evolving and the notion of mobilizing my own immune system to fight the both made sense and sounded far less toxic than the standard chemotherapy approach.
I had read about some vaccine trials in Spain that sounded promising. Unfortunately going to Spain probably wasn’t a realistic option. But finding a vaccine trial in the US might be.
To help with my research, I used a tool called OncoLink (created by the University of Pennsylvania), in addition to my own research on clinical trials. Based on the medical information I provided (not my actual medical records or test results), Oncolink sorted through the .gov data base and a nurse navigator provided me with the results of that search. The search paralleled what I had found on my own, and the similarity of the results was reassuring.
What wasn’t so reassuring was that there weren’t many options.
But there was one clinical trial at a leading cancer center that involved vaccines, being run by a renowned lymphoma expert. I talked to my local oncologist about the trial and he made the referral for me.
To qualify, I needed to send my biopsy to that cancer center. It took many weeks of perseverance to get a sample of my tumor from the tumor bank, follow up calls, and follow through to just apply for the trial. I needed to have my medical records sent. Then I waited.
In the meantime, with the help of my local oncologist, I set up an appointment for a consult.
On the morning of the appointment, I woke up early to drive 4+ hours to this new cancer center, only to wait 5 hours past my appointment time. But when the lymphoma fellow entered the room, I had his full attention.
He said two things that changed my medical trajectory:
One: “You need eleven options, but we only have ten. The key is to just hang in there.”
Two: “That tumor on your face, just do 2 by 2.”
“Two by two,” I asked, desperately writing down everything he said.
“Two gray, twice. Gray is a measure of radiation. Lymphoma tumors are very sensitive to radiation.”
With those two facts, I left.
The first piece of critical information– that there was indeed no cure– sent me on a serious trek towards health. I read everything I could. I was already active and fit, which was good. I dramatically changed my diet towards a plant rich, low glycemic diet. I (later) learned to meditate for stress management.
I recommend to everyone: READ DAVID SERVAN-SCHREIBER’S BOOK ANTICANCER A NEW WAY OF LIFE. Just buy it and read it. It’s the best guide out there to creating health, even in the face of cancer.
The other piece of information from the lymphoma fellow on radiation started an ongoing battle with my local radiologist in Reno. She insisted on 35 gray, seventeen times! The repercussions for the health of my teeth, bones, saliva production and other significant health variables are beyond comprehension. In her incompetent arrogance (and I suspect ignorance), she refused to even consult with any of the doctors at the world-class cancer center where I’d just been evaluated.
Suffice it to say my approach (2 gray twice) won, the tumor disappeared and the Reno radiologist never followed up in any way. I just watched the tumor slowly disappear from the side of my face. The entire experience, of head and neck radiation and the restrictive mask, the uncaring and incompetent nature of the doctor was just the opening sequence of my medical experience.
But I am getting ahead of the story.
While waiting to hear about the clinical trial, I was down in wine country for a long weekend. Sitting at dinner at a vineyard, my phone rang. A message was left. I excused myself to listen to it.
The world-class cancer center re-ran the analysis of my biopsy to as part of my evaluation for the clinical trial. But their results indicated a different type of cancer. The local pathologists had blown my diagnosis and I was not eligible for the clinical trial. The message went on to say that oncology office was closed for the weekend. I would have to wait until Monday for more information.
All the months of work and research were for naught. All my hopes were dashed, replaced by massive uncertainty. What type of cancer did I have? Was it “better” or “worse”? I was back to square one, my cancer was growing, and I wouldn’t have any information for nearly three days. And then I would start the whole process over again.
I spent the weekend smiling, dining and drinking great wine, while having an out of body experience the entire time.
What I found was that I had a very rare form of non-Hodgkins lymphoma, marginal zone lymphoma, a subtype of indolent lymphoma. This more precise diagnosis disqualified me from the clinical trial. There would most likely be few to no clinical trials for this specific cancer. There simply aren’t enough people impacted to make the expense of clinical trials worthwhile.
I was seemingly left with standard of care options. That meant chemo.
My research had showed that some people had luck with just monoclonal antibody (rituximab) treatments. Perhaps just a round of rituximab would work for me too. Still chemo, but perhaps with fewer side effects? Since then, I’ve met numerous people who have had success with this approach. I wasn’t one of them.
Rituximab became my personal drug from hell. I experienced every side effect imaginable, from crushing chest pain that made breathing difficult to head-to-toe hives. My joints swelled. I couldn’t even hold a cup of coffee and I screamed in pain, simply trying to coax my hand open under a hot shower.
The medical solution for alleviating these side effects was steroids, I turned them down. I knew that there was a good chance that I would be receiving rituximab indefinitely, since it is a maintenance therapy and I didn’t want to be on steroids for the long-term. Instead, I opted for an intensive course of acupuncture which cured all my side effects.
My local oncologist was basically a decent guy, offering standard of care. He didn’t believe in acupuncture, in diet or health oriented approaches to supplement medical treatment, and he simply shrugged off my battle with the radiologist. This group would soon merge with the other oncology group in Reno making it the only game in town; I needed to make it work.
The first round of treatment post rituximab was RCVP (rituximab, cyclophosphamide, vincristine, and 5 days of prednisone, plus the usual pre-medication cocktails that are a part of any chemo regime): six rounds, every three weeks. Rituximab was back in my life and I tolerated it poorly. My hair fell out; the man I was dating eventually moved on. Friends went on with their lives while mine was sidetracked by cancer.
Everything seemed beyond my control.
I enjoyed a remission for close to two years, as I recall. Then the blood markers started rising and I could palpate the growing tumors in my neck and groin. Scans confirmed renewed tumor growth and activity. It was watch and wait again, as the tumors grew, my neck swelled and another round of treatment seemed inevitable. I just wanted to postpone it as long as possible, to give my body time to heal and to give the medical research community time to come up with some new, hopefully less toxic options aimed generally at indolent lymphomas. I knew there would be no specific treatment for marginal zone lymphoma. I would simply be categorized in this broader, general category.
Scans once again became part of my life and I once again found myself battling for my own medical information. As just one example, a radiologist sent back a PET/CT scan report, simply saying that the cancer was “seriously worse” (or words to that effect–I don’t have my medical records for his exact, chilling words).
But his report contained no information on the location of the tumors; new tumor activity; the relative size, change or growth of existing tumors; and no information on the glucose uptakes rates to indicate SUV (standard uptake value, a measure of a cell’s biologic activity). I finally tracked down the doctor in the depths of the hospital radiation dungeon, where I insisted on viewing my own films.
It was not good news.
I went back to the leading cancer center where I’d originally pursued the clinical trial for another consult with an expert lymphoma doctor and more tests, biopsies and scans.
“Put her on the transplant list,” the doctor said to her staff without conferring with or consoling me. Having uttered this devastating news, she simply turned and walked out.
Transplant list? OMG. Another round of research to be done. Where would I go? How could I find some help? How would I ever manage this? Will insurance cover it? Can I afford it? Would it even work?
I’d have to wait two agonizing weeks for the final test results. I was facing a very difficult situation.
Except that the results didn’t back up the oncologist’s diagnosis. The marginal zone lymphoma was back with a vengeance, but based on the biopsies it hadn’t transformed. Yet.
By this time, Bendamustine had been approved for treatment and I was optimistic. They were getting decent results, (“In clinical studies, bendamustine plus rituximab is highly effective in patients with relapsed-refractory indolent lymphoma, inducing remissions in 90% or more and a median progression-free survival of 23–24 months”) and it should have been much easier than RCVP.
But it wasn’t.
Immediately following the end of this round of chemo, I continued to have hair loss (when I wasn’t supposed to lose any) and it’s never fully regrown. I also started experiencing deep pain in my right leg, then hip. In the course of just a few months, I went from being active, skiing and playing tennis, to being unable to walk.
Apparently my hip was suddenly failing and I needed a hip replacement. In my mind, the impact of steroids and chemo played into this sudden problem. The doctors looked blankly at me. Their only answer was that I’m just getting older.
The hip replacement did not go as well as I would have hoped. The surgeon made my long leg longer and in spite of rehab, living at the gym, and doing my best to get moving again, I was in constant pain. Apparently, a nerve was compromised. Shots might or might not help. The orthopod showed an appalling lack of care; it wasn’t his quality of life that was being impacted and he had already been paid.
My tennis and ski days were clearly over. In addition to working out at the gym for my hip, I turned to yoga. A year of difficult yoga led to some very good results, and most importantly, I had learned a lot about caring for my body and managing the pain resulting from the hip replacement.
Since then, more bone pain has arisen in my other leg and hip and my hands are experiencing a crippling atrophy of my fingers. I’ve had several other medical issues as well, which I’ve decided not to follow up on, given my relationship (or lack thereof) with my so called medical team.
This past summer (2017), I sold my house and simply went traveling (see www.CancerRoadTrip.com for the full story-it’s simply unbelievable) and now I’ve temporarily settled in Santa Fe. This has created yet another medical disconnect in any possible future care.
Looking back over this abbreviated history, what emerges is a tale of diverse pieces of information, seemingly unconnected, attended to by different doctors in different specialties, in different cities.
Enter Driver, a company recently founded by two Harvard-educated doctors (an oncologist and pathologist) and based in San Francisco. Driver offers:
These services might have changed the course of my medical care; they certainly would have provided some much-needed support in for my quest for doctors and treatment options (including clinical trials). And at the very least, I would have a continuous record of my care and access to actual test results, rather than records spread here and there.
Companies like Driver are pushing the bounds of accessible knowledge, combining medicine, entrée, hope and heart. If you’re facing a difficult cancer diagnosis, navigating large institutions and mind-numbing clinical trial data and detail, put Driver on your list of companies to consider. It might just save your sanity, if not your life.
Pat Wetzel is the Founder of the Anti-Cancer Club. And now she’s on a mission for health and healing:
Click here to learn more about #CancerRoadTrip
What would matter to you?
Creating a memory with loved ones?
A restful and healing space?
Twelve lucky winners will come together each quarter, with thought leaders in health, nutrition and mind/body science together for a healing retreat.
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