This August, as I crossed the miraculous seven-year anniversary since my diagnosis, treatments have become limited. I became aware of a trial at the National Institutes of Health (NIH) in Bethesda, Maryland that has been showing some success with metastatic patients achieving full remission. It is an adoptive cell therapy where they have removed a metastatic tumor from my liver and extracted lymphocytes to grow into my own type of immunotherapy administered with other drugs. It is an intense therapy that required many visits to Bethesda, Maryland starting in July for assessments, surgery and apheresis in August; and I was finally going to start the actual treatment around Thanksgiving time. However, when I visited the NIH November 7-8 to do a final assessment to prepare for the treatment, they found that the cancer had metastasized to my brain with seven small tumors. Having the cancer in my bones was not considered lethal. It causes fractures and much pain, but bone tumors do not kill. Brain tumors can. Distraught and heartbroken, I was informed that I could not receive this immunotherapy treatment with the tumors in my brain because during the process the tumors could cause the brain to bleed and they would not be able to stop it. I felt like giving up. I was crushed.
Despite the shock of hearing this news, I immediately sent a message to my local oncologist about the news and told him to start making arrangements for treatment ASAP. By time I got to my connecting flight home, I had appointments set. With these tumors being caught so early it is very likely that they can do gamma knife and/or cyberknife to zap them for good. After these brain mets are clear on scans for about 4 months, I can be reconsidered for the NIH treatment, or possibly find a local immunology treatment. The good that came from this NIH experience is that through their research they have discovered that my lymphocytes can recognize my cancer cells and attack them. This is promising! Immunotherapy in general may be a good option for me and is just starting to show good results for metastatic breast cancer. Hope.
I have missed a lot of work opportunities trying to take care of my high maintenance medical needs, and I keep pushing myself harder. After this news hit me, I realized that I am not taking care of myself by working, managing multiple appointments a month, and treatments. Now that the cancer has progressed to a more serious level, I need to stop pushing myself so hard and take the time to heal. Fighting this cancer should be my full-time job. This is where I need some help. Going through radiation treatment to my brain and another treatment (likely chemo) at the same time will be very taxing on my body and mind. I still intend on continuing with some part-time work, but will need to anticipate some time off.
My appointments with the oncology team (medical oncologist and radiation oncologist) will be on Monday, November 12. I feel hopeful going forward, but can’t deny being a bit scared. I would appreciate help going through this. Here are some things that I have been planning to help me through this:
1. Complimentary care through a functional or naturopathic MD who has experience treating cancer patients and helping them thrive through cancer treatment. I have a couple places in mind but am open to other suggestions. Complimentary care would consist of nutritional IVs, doctor recommended supplements, dietary guidelines and whatever else a holistic doctor would prescribe to keep me strong, healthy and enable my body to more effectively fight the cancer along with my conventional care. This will be out of pocket and could cost up to $2,000 a month for six months to a year including additional lab work, supplements, overall immune system support and office visit costs. (the first six months would be more intensive and taper off as I am better)
2. Other complimentary care such as massage (done at Froedtert by a masseuse trained in massages for patients with metastatic disease). Also not paid by Medicare.
3. For the next six months to a year, help with living expenses to limit the stress of trying to work as I get treated and try to heal. This is especially crucial for the next six months projected to get the cancer more stabilized. I love working, but I feel like it is time to slow down and heal.
4. Repairs for my car. I have an older car that has a long list of items to address. I have put this on the back burner because of everything else going on. The car is in wonderful shape but needs some maintenance work, replacement parts, and new tires.
5. I also would like to take the time to participate in a retreat or something to help me rejuvenate my mind, body and soul. Those who know me know that I am not usually the type to relax and rejuvenate. I feel that I need to make myself do this.
I am not sure where to set the goal at so I will start with $15,000. It can be adjusted as I learn more about my treatment plan and how my body is responding. My hope is that the complimentary care will help me sail through this without it breaking me. I struggle with feeling selfish in saying this, but it is time that Carrie takes care of Carrie. My trip to the NIH was quite traumatic, but I’m choosing to reframe that experience to something positive and KEEP HOPE ALIVE. I don’t believe that God intended for this horrible disease to kill me. I need others in my corner to believe in the possibility of healing and becoming whole. Thank you so much for listening to my story and helping me get through this. I can’t do it on my own.
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