It is a time of transition in my cancer treatments. I recently turned 25, which meant I would no longer be automatically covered under my parents' health insurance. Around the same time I learned that the hospital would not renew my oncologist's contract despite his unmatched expertise and long history with my particular case. On top of that, I have reached the end of Ifosfamide chemotherapy treatments and will be switching to a different cocktail of drugs. So my insurance, doctor, and treatments are all changing at the same time.
I was fortunate that prior to turning 25, my job as a full-time graduate student qualified me for coverage under my parents' health insurance. It was much more extensive than UIUC's minimal student health plans, and having two insured parents gave me both primary and secondary insurance. Many boring financial considerations prompted me to continue one of the plans with COBRA. Transitioning to COBRA has required navigating innumerable phone trees and poorly-designed websites. One event aptly illustrates how the tangled corporate bureaucracy seems to have engineered the transition for maximum difficulty.
My father called one of the insurance companies to get the COBRA transition forms. They directed him to a third-party company that handles COBRA administration. After another call, that company sent several papers, one of which had two check boxes: "Continue coverage on COBRA" or "Change coverage". Seemed simple enough. To ensure that the coverage started on time, my father called the administration company again to ask if there was a way to expedite the process. A representative led him to a website, but it only contained a PDF of the forms we already had. Dad called again. This time another representative gave him an email address to which he could email a scan of the form. But what about the enrollment fee? For that the representative pointed him to yet another website. There, my father learned that one cannot sign up for the online payment system without having already made a payment.
Catch-22.
In the end, we just sent the paper form and a check. Today my COBRA enrollment finally showed up on the account website, but it could take another 30 days for the insurance company to reinstate coverage. Fortunately, it will retroactively cover any expenses accrued over that time, so I am still officially insured.
Enrolling for COBRA may have been comically difficult, but at least we expected my 25th birthday and the corresponding change in insurance. The change in doctors came as a complete surprise.
Two treatment rounds ago, I was laying in my hospital bed when my oncologist Dr. H came in and said he had some bad news: the hospital would not be renewing his contract at the end of the month. I was slightly woozy from the drugs, so it took me a day for the news to sink in fully. That was terrible news! Dr. H has been my oncologist since my first diagnosis in 1999. Since then, I have continually been amazed at his clinical expertise and superb bedside manner. He always explained not just the side effects of treatment, but also the science behind a drug's effect on the body. He also always spent as much time as needed with me and my family, discussing treatment options or just personal news. Several years ago, between my second and third diagnoses, he started an oncology clinic at a different hospital. When he moved to the clinic, many other patients, several nurses, and I followed him there.
From these personal impressions and everything I have heard from the nurses and other patients, there is no way the hospital could let Dr. H's contract expire due to any question of his competence. Rather, from what little I have been able to learn, it was due to corporate politics and reorganization pressure from hospital administrators. The clinic Dr. H started is still running, but it will now be staffed by a rotating group of oncologists from another nearby hospital. Many of the nurses who have cared for me for years remain but fear for their jobs. I fear that the clinic will lose much of the individualized care that Dr. H brought to it.
Last week I met with Dr. H for the last time. It was an emotional meeting. After thanking him for his many years of care, my family spoke with him about the future of my treatment.
The week before I had my final Ifosfamide chemotherapy treatment. That made six, much more than we had initially expected and far beyond the recommended lifetime total dosage. Like the last two-round rotation, I also had a PET scan to assess drug's effectiveness. The lung tumors appear stable, perhaps slightly "dimmer", but two new spots have appeared in my leg adjacent to the scar from my femur replacement surgery. Their appearance is disappointing, but not particularly surprising since there is always a risk with tumor surgery that cancer cells will escape removal. So I have reached diminishing returns with Ifosfamide and two new tumors have appeared. It makes sense to switch chemotherapy drugs. Fortunately, this was always the plan, so the latest scans simply confirmed that now is the correct time.
Dr. H laid out the new treatment plan. To quote the documentation (with links and notes added):
Gemcitabine [also known as Gemzar] will be administered over 90 minutes by intravenous infusion. One week later, the dose will be repeated and a second drug Docetaxel [also known as Taxotere] will also be given to you by intravenous infusion over one [additional] hour. Each treatment will be given in the clinic or hospital, and will be repeated every 21 days, provided you have recovered from any side effects from the previous dose.
Just three hours out of 21 days! That means I do not have to spend days in the hospital! Instead, I can just go to the clinic, get hooked up to an IV, and leave a bit over an hour later. Most people seem to handle Gemcitabine and Docetaxel without many side effects. I had the first treatment today, and the only side effect I noticed was fatigue. After a long nap, I ate lunch without feeling any nausea whatsoever. There are also many reassuring anecdotal stories of the drugs' effectiveness. I will eventually get more scans to see if they are effective in my case.
Despite all of these changes, I am optimistic about the direction of treatments. COBRA coverage will last three more years, at which time I expect to have graduated and started full-time work. Dr. H hopes to open another clinic somewhere around the country, so he will rejoin the national network of oncologists that my new doctors can access. Finally, the new drugs eat up much less time, allowing me to regain some of my life.