Taking inventory

I’m not sure if everyone does this, or if it’s just me, but during the year before a Milestone Birthday, ( 21, 25, 30, 40, 50 etc) I do an “inventory” of where I am in life versus where I want to be.  If I died tomorrow would I have any regrets?  Do I need to say anything in particular to anyone? Are my affairs in order?  What do I want to accomplish in the next 10 years?  and so on and so on.  I also do this everytime I get another scary diagnosis.  I will be 49 in less than a month which will start the “OMG I’m gonna be 50 reflections”.  This year I get to kill two birds with one stone I guess?  lol

When I was 29, I received the “wonderful news” that I had cervical cancer.  As the doctors were talking about chemo and radiation, I asked, “why not just take it all out?.  ( do a hysterectomy)  You should have seen the shock on their faces.  I heard, “but you’re not married!  What if you want more kids one day?”  For me it was a no Brainer, I was a single parent. I kind of had to be alive to raise the two children I had.  If doing a hysterectomy would allow that to happen, that was the decision.  I had to go see a psychiatrist to make sure I was capable of making such a decision all by myself?!???!…. I did. Still smh about that.  Yay the hysterectomy worked!  No more cancer! 

I think this was the first time I did the whole “inventory” thing.  My biggest fear during all that time was that my kids wouldn’t KNOW me.  The real me.  The one who makes mistakes 2 or 3 times before learning a lesson.  I started making photo album journal diaries for the kids.  I made albums containing my deepest darkest secrets, and ones for each year of each of their lives.

But I digress.  As I look back over the last 48 years of my life, I can honestly say that I’m not disappointed.  I have made ALOT of mistakes, and have learned most lessons the hard way, but there is no doubt that I HAVE LIVED!  Looking into the future, I am not even a little bit worried about girls and their families.  If something were to happen to me, I believe they would both step into the role of taking care of my parents.  They would even check in on Einstein for me. Can I really ask for more?

With all of that being said, I think I am ready to take the next step and make the switch to Ocrevus. The 3 disease modifying drugs that I was considering all require a certain blood tests before beginning treatment. I have had the tests completed. The next step is waiting for approval from the insurance and drug company. I won’t be “sitting” here waiting. I have a life to live, and Monday morning I’m heading out to see the grandkids to do just that!

Decisions, decisions, decisions

I can’t tell you how many times or with how many different people I have had this SAME conversation. This time something changed.

I have been on Tysabri for almost 13 years. That is means close to 140 infusions. I don’t know the exact number, but I’m pretty sure Biogen (the company that makes the drug) could give you an exact number, as well as my JCV number, how many lesions I have on my brain and spinal cord, etc.

Facts we know:

  1. The longer you are on Tysabri, the more likely you are to develop a deadly brain virus called PML. Because of this, most doctors only prescribe Tysabri for a few years before recommending a different drug.
  2. While on Tysabri you have to have blood tests for the JC Virus every 6 months and an annual MRI to monitor your risks for developing PML.

Two years ago, not only did I test positive for the JC virus, but my numbers were quite high. (1 is bad, I was at 3.43.) My neurologist suggested that I consider changing to a different MS treatment. I refused. Tysabri has been a miracle drug for me. (Many posts about it) I did however agree to more frequent JCV testing and MRI’s. I am supposed to go every 4 months, but I haven’t because….well life.

Over the next 6 months, my JC numbers continued to climb to 4.69, so I made what I feel was another concession. Instead of getting an infusion of Tysabri, every 4 weeks, I would allow them to extend the time between doses to 6 weeks. (Personally, I hate the longer time in between infusions, because the last 3 weeks are slump weeks” for me, but my numbers have stopped increasing.) They are still high, but haven’t gone up, so that’s a good thing.

This last year I’ve noticed that I am more fatigued. I have trouble finding the right words and expressing my thoughts, and my legs are heavier and painful each night. I have been shrugging it off, and attributing it to the longer intervals between Tysabri infusions, the fact that I am getting older, and the additional stresses in my life. (taking care of my parents, covid, and dealing with people in general) , but my last MRI shows that I have new lesions in locations that correspond to my symptoms.

The entire time I was taking Tysabri (at 4 week intervals), I had no disease progression or increase in lesions. (Apparently a six week dosing schedule does not prevent relapses for me) The medical community considers the risks of pml too high for me to go back to a 4 week schedule, so maybe it’s finally time to change?

I’m scared that I am going to start having frequent relapses. I don’t want to go down that road again.

Before Tysabri, I was in a wheelchair. I know it’s not the end of the world, but still. I was severely depressed and was being hospitalized for MS flares approximately every 3 months. Not the kind of life I wanted to live.

I am also pretty scared of some of the side effects of the other drug options available. 😦

I come to wordpress when I need to “get out of my head”. Thank you for allowing me to do that, and reading along. It helps to not feel so alone.