Good News and Big Business

On Monday, February 4, I drove to Ann Arbor with my mom and dad for two appointments and spent most of the day there. My parents were able to come with me, which was a great help- they took notes and asked questions and provided company during the day. The first appointment was at the University of Michigan Comprehensive Cancer Center. We got important news from the hematologist there- the final bit of information from the pathology done on the lymph tissue they took out of my neck on Jan 18. We had been waiting to find out if the sample was positive for the MYC genetic mutation, which would have been bad news, a "double-hit". They'd already determined that the sample was positive for BCL6, and the combination of that with the MYC mutation would mean that it was an extremely aggressive cancer that typically doesn't respond well to treatment. The genetic mutations that are present in my lymph tissues are the ones responsible for making too many cells that live longer than they're supposed to, which is what cancer is all about- poorly regulated cell growth. The pathologists determined that the sample was negative for MYC, which then meant that instead of having a really bad, unresponsive-to-treatment type of cancer, I have the fifth most common cancer out there- diffuse large B-cell lymphoma, which does typically respond well to treatment. The three of us gave a giant sigh of relief in unison upon hearing this news. U of M also agreed that the lymphoma is at stage II based on my CT and PET scans, which continues to be good news.

So it seems clear that I will be going through chemotherapy soon and that the treatment will be hard on my body, but that it is a necessary step to get rid of the unruly cells that started this whole thing. The treatment will include a drug called Rituxin, which "changed the natural history of lymphoma treatment" when it was developed (according to the hematologist at U of M). It was approved by the USDA for use in 1997. Rituxin is a monoclonal antibody that targets B-cells, which have a particular protein called CD20. B-cells are made in the bone marrow and do not have CD20 when they are first made, so brand new, cancer-free B-cells will develop after treatment once the cancerous (and healthy) B-cells outside of the bone marrow are attacked by the Rituxin. The chemo treatment options include Rituxin and the use of other drugs, either CHOP or EPOCH, which is CHOP plus etoposide. I may be part of a clinical trail that includes being randomly assigned to one of these treatments. More on that after my oncology appointment on February 28.

The second appointment that day was at the Center for Reproductive Medicine. I met with an OB-GYN to learn about the process of cryopreservation of some embryos prior to chemotherapy. You see, chemotherapy doesn't treat eggs very nicely so it is wise to get some put on ice so that we can use them later. It turns out that fertilized embryos freeze and thaw better than unfertilized eggs. The Livestrong Foundation has an awesome program called Fertile Hope that subsidizes the costs of cryopreservation for cancer patients, and I've already been approved for that program (big thanks to Sara C. for telling me about it!). So over the next month I'll be going through one cycle of IVF, and then I'll get started with chemotherapy. It feels a little scary to be delaying my cancer treatment, but I feel strongly that having the chance to get pregnant with my own egg(s) later is part of surpassing this situation, not simply surviving it. We've also checked in with the oncologists we're working with and they think it's a good idea based on my age, the new diagnosis and staging, and the fact that I continue to have zero symptoms.

My parents and brother were able to do a bunch of research this week on health insurance (my current student health insurance sucks for this kind of situation), cancer support services, and other financial matters. I am so grateful for their help in navigating the interwebs and automated phone systems to dig up all that stuff while I was at work/school. There are several programs that can help under-insured folks like me to pay for cancer treatment, and so I've now applied for a Rituxin subsidy program through Genentech and some financial assistance through the Leukemia and Lymphoma Society. I'm also applying for new health insurance since the student health plan has no out-of-pocket maximum and also has a limit on how much the insurance will pay out per condition. Considering that a single dose of Rituxin costs several thousands of dollars and that I may need to be hospitalized at times during treatment, it may be easy to max out that benefit.

The next step is that tomorrow I'm having several procedures done at the hospital: a bone marrow biopsy and spinal tap to do a final stage diagnosis confirmation, and the installation of a port in my chest for the eventual administration of the chemo drugs. Tomorrow is going to be a rough day, but I get that it is a necessary step that needs to be taken. My dad will help get me to and from the hospital and will hang out with me while I'm doped up post-procedure. I'm not excited about having a port in my chest, especially so soon, to have such a visual reminder of what's going on. Since I don't have any other symptoms, I can successfully have a few moments each day where I can let the cancer thoughts slip away to the back of my mind. But if I've got a port sticking out of my chest, rubbing on my clothes and who knows what other sensations, glaring back at me in the mirror- it may be harder to escape the reality of what's going on. I imagine it will be similarly tough to see myself without hair, which I'm told will happen around the third cycle of chemo. I'm open to ideas for hats/scarves/etc. that you think would work for me as I'm not in the habit of wearing much on my head other than a beanie in the Michigan winter. I don't plan to wear wigs (unless they are very obviously wigs- like purple or something), but I imagine I'll want to cover up my bald head when I'm meeting new people or am in other situations where I don't want to have to talk about cancer. I've recruited some photo students at WMU to work with me to document the journey that my body is going to go through with cancer treatment and will be sharing some head shots shortly.

This week I chose to drop a few activities to make time to take care of my mental/physical well-being. I resigned from a board of directors where I was the co-chairperson, and dropped one of my studio classes. I will continue serving on another board, taking four classes at WMU, and my part-time job for as long as I can handle those things. It helps me a lot to keep a routine and stay busy. So with at least 6 hours/week freed up I now need to resume some previously suspended self-care habits like meditating, exercising, and eating good stuff. Posting to this blog will be part of that self-care regimen, too, since it helps me process and document what's going on. Thanks for reading!