Are you prepared to die?

Before I continue, let me assure you that this is NOT a suicide note, nor is it a notice of my impending death.  This is a question I’ve asked and answered myself many times in my life.

If you’re not dying, why do you bring this up now?

I just received some unsettling blood tests, and I have some choices that I have to make.  When I receive bad news, in order to not “freak out”, I look back at all the things I have survived in my life to remind myself that I can be pretty damn tough.

As many of you know, I was diagnosed with MS over 20 years ago.  What you may or may not know is that I have had 3 family members die from complications of MS.  This disease has been “in my face” for many years before it actually caught me.  When I was diagnosed, I asked myself if I was ready to die, not if I was prepared, but if I was ready.  The answer was, “HELL NO!”  For the first year though, I didn’t do much to FIGHT it.  Instead, I began drinking ALOT.  I also started behaving very manically, (well if I’m going to die anyway, I’m going out with a bang)

About a year after my “MSaversary”,  I finally stopping running and faced the diagnosis. I began taking the disease modifying drug Betaseron.  For 10 years, I gave myself an injection every other night, yet my MS symptoms continued to steadily progress to the point that I was in a wheelchair more often than not.  I was constantly depressed.  During this time, my kidneys began shutting down, AND I was diagnosed with cervical cancer.  Around the 10 year mark, I think I WAS ready to die.  Not prepared, but ready.

At then end of 2009, my girls and I made the very long hard decision that I was going to begin receiving monthly infusions of Tysabri even though it could kill me.  I decided that QUALITY of life meant so much more to me than QUANTITY!  I have previously written about how the decision was made in a Five part series if you would like to read.  The decision to start Tysabri Part 1The decision to start Tysabri part 2, The decision to start Tysabri part 3, The decision to start Tysabri part 4, and finally, The decision to start Tysabri part 5.

To date I have received 121 infusions of Tysabri.  I credit this drug for giving me my quality of life back.  I do not regret my decision in anyway, in fact I have even argued with my doctor about NOT switching medications when he suggested that I consider it. Last year, I wrote “Who’s the boss anyway”? explaining my reason for denying the change.

At the end of last year, I had to see my neurologist so he could perform my yearly neurological exam, refill my prescriptions, and send me for the required JC virus test to be allowed to remain on Tysabri.  My son in law was nice enough to drive me to Chicago for the visit.  Because of my newest list of injuries, the doctor was unable to provide a complete exam.  The parts of the exam he was able to perform showed that I had increased numbness (lack of feeling) on the left side of my body.  I have also been having some issues with my vision (though I have been attributing that to my age).  He wrote the refills for my prescriptions, and the order for the bloodwork, and we agreed I would come back for a full exam once my foot healed enough to be able to walk on it.  (hopefully March)

NOW let’s talk about these unsettling blood tests….

My bloodwork came back stating that I was now JC+, meaning I had the John Cunningham Virus (JCV).  Not only did I test positive for the virus, but my titer levels are considered very high. 4.8!

hmmmm now what?  I have a decision (well several to make)

Here are the drug facts

In addition to revealing that I have now become JC+, my bloodwork revealed that my Absolute Eosinophils are high.  What the hell does that mean?  A quick Dr. Google search said…

Eosinophils are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. You can have high levels of eosinophils in your blood (blood eosinophilia) or in tissues at the site of an infection or inflammation (tissue eosinophilia).

OF course the first thing I saw was CANCER……cmon!!!!!!!  Seriously?!?!?

After speaking with my Neurologist, WE have decided first to have the bloodwork performed again.  (there is always a chance for a false positive?)  Because of the decreased sensation on one side of my body, the increased balance issues, and vision changes, IF the test still comes back with a high Titer level, the first step will be to undergo further testing for PML.  I haven’t even thought about further testing for the High Eosinophils, I honestly believe that everything else going on in my body is causing that.

I have so many questions and decisions to make that I find myself asking again, “Am I prepared to die?”

 

 

 

 

23 thoughts on “Are you prepared to die?

  1. WEll you made this hard to ‘like’ but…wow! I hope your next set of blood levels show the last ones to be erroneous. I feel the trepidation in your post…the cold, hard reality of end of life staring you down….or maybe just drug changes which may or may not change your quality of life. I am completely empathetic as I, since my diagnosis, have asked myself sooo many times what I’d do if the CA ‘returns’ or mets somewhere else. It’s a very, very surreal place to be, isn’t it?

    Liked by 2 people

    1. TY Karyn, I know that you can relate. For today, I am going with the whatever doesn’t kill you makes you stronger bit. I can’t say that I am numb exactly, but I’m also not freaking out or being too optimistic if that makes sense

      Liked by 1 person

  2. JCV, that’s not something I’ve heard about in ages. I know exposure is supposed to be quite common. I guess the worry is that a weak immune system could lead to this developing further into a brain infection with a more drastic impact. And pretty worrying when you’re told your levels are so high. I think PML is further damage to nerves, but then I don’t know quite how they’d distinguish those from your MS. Jeeees, when it rains it pours. I’m so sorry you’re having to go through this and the wondering and worrying must be bloody awful. Please know we’ll all be thinking of you and I’ll keep my fingers crossed the symptoms are just ‘par for the course’ and that JC+ can be dealt with and there’s no progression to PML. When are you expecting further tests?

    Sending lots of love  ♥
    Caz xxxxxx

    Like

  3. Goodness Grace-ious! You have indeed survived through so many things and come out with a damn fine outlook about it, and here we go again! Yeah, I often think that if I got hit with something chronic I’d take the “drink it away” approach, too, at first. Maybe at next, too. Possibly at last. Or maybe not. One can never know! But, yes, this is a frightening title and a sobering final line. Are you? Am I? Can we be?

    I am not, not in any way. I don’t know what else to say about that except that I am not, not in any way.

    And neither are you. Fight, fight, sister. Best wishes on the next tests!

    Liked by 3 people

  4. Now I have the song “Bad Moon Rising” stuck in my head, which isn’t so bad because I like the song and, also, compared to what you’re going through, having a song stuck in my head doesn’t even register as a problem, even if it were a song I hated.
    And it sounds like there’s some hope here. You have, to extend the metaphor, weathered other storms, and you can be prepared for the worst without completely giving up. Sail on, Grace, sail on.

    Liked by 1 person

    1. Please don’t be scared Kim! The fact that I wrote it all down and the thoughts aren’t being blenderized in my brain has really helped me. (I know the decisions are there and I can pull them out and put them away as needed) if that makes any sense. It is scary, but it also is what it is. What I can do is control my reaction or try to. Thanks for being there.

      Liked by 1 person

  5. You my dear sweet friend forced me to like this because it was so well written. I did not know you had 3 family members that died from MS. I have had it for 19 years and I guess it never crossed my mind it could kill me. In the past I would have said I was afraid of death, but honestly I am not anymore. No, I am not thinking of ways to end it all, but life lately has been complete hell, so death just doesn’t scare me. I think about the family I had that have passed away and hope someday to see them again.I am thinking of you and wishing for wellness and happiness for you.

    Liked by 1 person

    1. My birthday this year was my 20th MSanniversary if you will. When I was first diagnosed I was scared as hell that it would kill me too. I had so much that I wanted to do with my life. While I am not looking forward to or hoping to die, I am more resolved that one day it will happen to all of us. I currently live each day not counting on tomorrow, my children are both in good places. I guess I’m trying to say that “my affairs” are in order. So if it happens, it happens. I’m sorry to here that life has been hell for you lately, hopefully we can catch up soon!

      Liked by 1 person

      1. I believe that living each day the best we can and knowing tomorrow isn’t a promise is the truth. We never know when our time is up, I firmly believe our story was written before we were even here and we just play the part. We definitely need to catch up soon!

        Liked by 1 person

    1. Giving up is not an option for sure. Ty for the comment and the hugs. There is a big big difference between being prepared to die and ready to die. While I may be prepared, I am in no way ready!

      Like

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