Wednesday morning I met with my Dermatologist for my yearly review which went swimmingly. She is one of my absolute favorite physicians... which is saying something because I have a lot! lol She is young, kind, knowledgeable, and so in-tune with her patients! She took a detailed look at my scalp as I have been having issues with sores the past year or so. Recently it has gotten to the point where I cant brush my hair without getting blood, so we decided it was time to get these pesky unknown sores taken care of. Luckily she does not believe it is anything serious, but an odd side effect of a medication, folliculitis, or possibly staph, though staph would be unlikely. We cultured them just in case and are starting a third medication since nothing else has seemed to help them heal. If this medication fails we will take a biopsy of the scalp in a few months. As a funny side note, she always comments on my "beautiful skin!" Due to the extra collagen from my illness my skin literally seems to shine, leaving no dimples or blemishes, giving it a perfect smooth appearance. I often look like I am literally made of porcelain, plus that nice "anemic-glow" I have doesn't help my case ;) lol
|Some girls accessorize with shoes, but I accessorize with tubes! ;)|
Wednesday afternoon was my monthly chemotherapy infusion at the local university hospital. The drug I get is called Rituxan (Rituximab.) This is a drug that eradicates the immature B-Cells in my body. The purpose is to deplete my immune system of malfunctioning cells, but I can without a doubt say, this drug is not doing its job. My disease is continue to progress, and at a very fast rate. Nonetheless, my doctors are continuing my relationship with this drug until we can locate a more aggressive treatment. Rituxan in itself is a very dangerous, and high class medication used in Cancer and serious autoimmune diseases as a last ditch effort when patients respond to nothing else. Many patients have severe life threatening reactions to this medication, but the worst part is, it can happen at any point in your treatment; it doesn't always happen your first infusion. Sometimes it's the 5th, 11th, or 100th time you receive it. Each time is a lottery. One day your body decides it has had enough poison and ties to kill you. Luckily, I have not had a large reaction in my history with Rituxan, but my nurses are always reminding me of the possibility, and of how dangerous of a drug I am pumping into my blood stream.
Today I had one of my favorite nurses, Gale. She is incredible and is always willing to go the extra mile for me. We had a lengthy conversation over my five hours at the infusion center. At one point we were talking about treatment option on the horizon and she said "It is so sad that diseases like yours don't have more research. Autoimmune diseases effect the same amount, and if not more people than Cancer, yet so little is being done." Coming from a nurse who has been working in the industry for 37 years, and seen just about everything, this small statement meant so much to me. To have someone understand the torture and fear a autoimmune patient faces in a world that can only seem to grasp illness is a validating feeling. So many autoimmune diseases have no research, and flat out no treatments made available to patients. We suffer through drug after drug that do not prove us any benefit simply because no one is willing to research our terrifying, and persistent conditions. We talked about Scleroderma specifically for a while and she told me that in her 37 years she hasn't seen very many cases. It's amazing to me that a disease as debilitating, yet fascinating, can be so unknown. I cannot think of a disease much more horrifying than turning into a living statue as all your organs become paralyzed and cease to function. It is truly an awful way to die. Overall my infusion went well and seemed to fly by today. I brought a fun pass time called "The Mindfulness Coloring Book an Anti-Stress Therapy for Adults." Coloring really does clear the mind! The time I wasn't doodling I enjoyed my time chatting with Gale about life, and where I hope to go from here with treatment. We both are putting faith in the possibility that a Stem Cell Transplant is in my future.
Next week starts another parade of appointments! I see my Electrophysiologist about my malfunctioning autonomic nervous system, my Pulmonary Specialists to repeat my PFT, and my Rheumatologist to hopefully review new treatment options. Later in the month I have an appointment with my Scleroderma Specialist from UCLA; I really believe he will be able to point me in the right direction! My body is so unhappy right now and all I can do is try to keep it a float until I see him... You can do it body! Just one more month! And thank you as always to all my incredible readers for your overwhelming support and love! I read every email, and every comment! They always bring a smile to my face!