As the doctor handed me a two page paper to sign, the only words that stuck out to me in big bold letters were “Chemotherapy Consent“…
Let me back up and start from the beginning. I have been regularly going to the rheumatologist and about nine other specialists for my various symptoms and complications stemming from my newly diagnosed Sjogren’s Syndrome. I had no improvements on the new medication (methotrexate), but I also had no reactions so there was hope for a positive change. I was diagnosed with additional GI issues that have been most likely causing my GI symptoms. In November, I was diagnosed with tendonitis and bursitis in two places in my left foot. After two cortisone shots, about seven weeks limping along in a boot and shockwave therapy, I only felt minimal relief. The sports medicine doctor and podiatrist were banking on my rheumatologist to keep the constant inflammation at bay. The week before Christmas, my rheumatologist office calls and says that my doctor isn’t coming back from vacation and is abruptly retiring, but I will be transferred to another doctor in the practice. I went this new provider in January, who states that she is taking me off my previous medications, is disregarding the plan in place, and refuses to treat my Sjogren’s because she believes nothing will work, so she just isn’t going to do anything. Basically, she left me high and dry at the end of the appointment with seemingly no light at the end of the tunnel.
In the midst of paying my non refundable deposit and making the announcement that I will soon be starting courses to obtain an MBA from Temple University’s Fox School of Business, I have now had to make tough decisions about my health. As I was furious and frustrated with the “new” rheumatologist, I luckily (it was really a stoke of luck) was able to get a last minute cancellation slot with one of the best Sjogren’s doctors in the country at another hospital. He spent over 40 minutes with me, addressing all of my questions and concerns. Since I was unable to be treated with his first choice treatment option because my insurance wouldn’t cover it, he suggested I receive Rituxan infusions.
As the doctor handed me a two page paper to sign, the only words that stuck out to me in big bold letters were “Chemotherapy Consent“. Those words terrified me. According to my doctor, Ritxuan is a chemotheraputic agent (but not chemotherapy and I still don’t understand the difference), used in treating used in autoimmune/rheumatological diseases such as Sjogren’s and rheumatoid arthritis, but also used in conjunction with other chemicals to treat cancer. It is a monoclonal antibody that is used in killing the cells that cause inflammation. He explained the process and side effects, before handing me a bunch of info sheets explaining what he was discussing. I left the office in a daze with a two page packet of side effects, having to make a decision of if I wanted to move forward. After reading through the information, spending a lot of time on Google educating myself (check out the links above), meditating and reflecting, I have made the decision to move forward with the infusions. I waited a little over two weeks for processing and for insurance approval, but my first one will be on February 10th at an infusion center. I will get these infusions two weeks apart, every six months (4 each year), for the rest of my life. Each infusion will last approximately six hours and before each one, I will be injected with medications to help reduce the chances of a possible reaction.
This is a huge step for me. Everything has become more real. First, it is admitting how sick I really am and the fact that I need a treatment this seemingly major. Secondly, it is the fact that I have to make these difficult decisions when I am still a twenty-something trying to get my shit together. Third, it is knowing all of the things that go along with the Rituxan infusions such as possible side effects and long term effects. Although the chance of a life threatening reaction is extremely limited, this is still a risky treatment option especially long term. I am not sure if this is a brave or stupid move but I do know that my quality of life is not where I would like it to be and that is why this decision was made. My Sjogren’s (and POTS/neuropathy/bursitis/GI problems/joint pain, etc.) is causing increased symptoms and complications, so I am willing to take a risk in order to have a chance to really live my life and not just go through the motions. I still have plenty of things left to cross off my bucket list and I want plenty of years to be able to do them all! There is a lot of unknown including side effects, reactions, or even if this treatment will work. There is fear associated with the unknown, and I am not afraid to admit that. These infusions are a hard topic to discuss and for most of my friends and family, reading this is their first time hearing about it. For now, I am still trying to process everything myself.
As always, I am prepared for the worst but hope and pray for the best. I appreciate everyone who has prayed/sent positive vibes my way and everyone who has continued on this journey with me.
8 Comments Add yours
Natasha I can understand your frustration and worry about the treatment you have been considering. I think you’re making the best choice in your circumstances. I’m praying for you and thinking of you and hoping you get some relief. You are an amazing, strong, intelligent person and I believe God has bigger plans for you, Know that I love you and I’m here for you.
Thank you Aunt Johnnie Sue! Love you and I appreciate all of your support!
This is much more than anyone should have to deal with, but I am glad that your public health background helps you to evaluate your options and decide what your steps should be. I am also glad you have a long bucket list and intend to live your life to the fullest…which, of course, you are already doing by adding an MBA program into your life!! I fervently hope that the infusions bring you real relief and no unpleasant side effects. Hugs to you across the miles!!
Thank you Paula. I appreciate the kind words. I can’t even begin to describe how thankful I am for your support over the last few years. You’ve been an amazing mentor and friend. Hugs and I hope to catch up with you soon!
I love you!!