I try to keep things real without being too depressing or coming across as complaining. The reality is that is has been HARD since this weekend. But instead of whining about how awful I feel, I figure a big health update is in order.
My neurologist and oncologist had a miscommunication that not only delayed me receiving the drug I needed, but it also prevented me from being able to get plasmapheresis twice. My daily medications help, but my plasmapheresis every 5 days is the biggest help. I’ve been struggling terribly without the plasmapheresis and I know the next two plus months are going to be hard without it.
I was approved for a biologic/chemotherapy agent called Rituxan/Rituximab after an initial insurance denial. The catch is that while I am receiving Rituxan once a week for four weeks this month and then once every 6 months, I can’t have plasmapheresis too because it would pull the drug out of my body, which means I’m going to struggle. Rituxan doesn’t work instantaneously, which means not having the plasmapheresis will be a challenge. This unfortunately, means that I will be feeling it all. I’m blessed to have access to Rituxan, but it’s still going to be challenging. Side effects of the medication can be intense as well and typically last for several days after the infusion. Because I will be receiving it weekly, it is likely that I will feel very crummy this month.
Also, I have had some exciting news for a while and I wanted to share it with you all when the time was right. I believe that time is now. I’ve been accepted as a patient of Dr. Scott Newsome, top Stiff Person Syndrome specialist, the only Stiff Person Syndrome Center in the world at Johns Hopkins. My parents and I will leave for Baltimore September 17th, I will have a specialized EMG (muscle contraction study) on the 18th, and I will meet with Dr. Newsome on the 19th for 2 hours before returning home. We were told this is unusual as he usually only sees patients for an hour at once, which I think speaks to the complexity of my case. We are thrilled that Dr. Newsome has agreed to take me on as a patient. It is the answer to our prayers.
Rituxan, oral immunosuppressants, another intrathecal baclofen trial, and an experimental hematopoietic stem cell transplant (HSCT) are among my remaining options for treatment. I am
cautiously optimistic that the Rituxan will help and that Dr. Newsome will be able to give us some more answers. I will be treated and under control in God’s perfect timing. It may not match up with what I want or those around me want, but let whatever God’s will is be done.
“God grant me the serenity to accept the things I cannot change. Courage to change the things I can and the wisdom to know the difference.”