Daily Archives: May 16, 2013

Livin’ it Up While I’m Goin’ Down…

Livin’ it Up While I’m Goin’ Down…

Pre-testing, over.  Stim shots, over.  Catheter placement, over.  Chemo, over.  Stem cell transplant, over.  That went rather quickly, don’t you think? At this point of the treatment, EVERYTHING revolves around your daily blood test results.  I will have a blood draw early each morning, the results will be processed by early afternoon, while, behind the scenes, my meds will adjusted accordingly.  Only one of my lab results yesterday was out of range.  That of the liver, which Dr. Fedorenko said, based on me having taken so many MS immunomodulating drugs in the past  (Betaseron, Copaxone, Gilenya, Tysabri) and the fact that I had just endured chemo, that range was not alarming and that he has had patients with double that result in the past.  Otherwise, kidney function, as well as everything else was completely normal.  In hindsight, it’s crazy to think of all of the damage that I’ve done to my body by taking all the typical MS drugs.  That was also a contributing factor to why I was only able to get minimal stem cell collection on the first day of collection.  It’s my understanding that those drugs have an effect on your bone marrow.  Who knew?!  If the doc tells you to take something that will help to keep your MS at bay, at least in my case, I shut up and do what I’m told…for a while.  ha ha

If you’ll notice on the upper right sidebar of my blog, I’ve included a “Leukocyte Watch”.  At this stage of the game, that is what my world and level of isolation will revolve around.  The leukocyte levels will be indicative of the fragility and/or growth of my new immune system.  When the number hits 0.50, my level of isolation will change, as will the protocol that takes place in the room where I currently reside.  I will remain in the same room I have been for the last week, for the remainder of my stay.  However, my inner door will always remain closed unless to use the restroom and all who enter will be gowned up, masked up, and bootied up.  In addition, mom will no longer be able to visit (Look out Moscow, Connie’s on the loose!).


Dr. Fedorenko just arrived to share with me that my leukocyte level had dropped to 0.47 and that my room’s protocol and I would be stepped up to the highest level of isolation.  By reaching this number, I have now entered the neutropenic stage of the treatment, which means that I will be living with a very low number of white blood cells in my system.  This increases my risk of infection and leads to my increased level of isolation.  This period will last approximately 7-8 days.  Over that 7-8 days, my numbers will first continue to drop.  By the end of that period, they will begin to rise, with the goal of 1.0 leukocytes, which will indicate that my stem cells have actually engrafted (taken hold) and are starting to rebuild a my new immune system.  He said that I had reached the goal of below 0.50 one day sooner than expected and, for some medical reason, that was a very good sign of successful results in the future.  Way to overachieve leukocytes!  You’re the best!

Dr. F. told me that within a few hours, the nurses would arrive to completely change out the linens in my room, scrub the room down, and me.  Yes, me.  At least for the first go around, they will be teaching me, with special solutions for each part of my body, exactly how to cleanse myself  for maximum removal of bacteria or other harmful germs.  I will then be able to wear only my underwear and a bra, with a hospital gown (I’ll post pics of that, for sure).  They will allow me to wear my socks.

As far as moving around my living areas (bedroom, corridor, bathroom), I must always keep my door shut.  When I go to the bathroom, the door must be shut behind me at all times.  I am able to access my food and drinks.  He said that the nurses will now be fully gowned, and masked when they enter the room.  I will once again begin receiving stimulation shots in the upper arm, once a day at 3:00 p.m.  I will also continue to receive two doses of protective IV fluids, twice a day.  As he reviews my bloodwork results each day, he will adjust my medications accordingly.  He said that I am also to pay keen attention to my symptoms from this point forward.  Any changes to temperature, digestive issues, dizziness, weakness, etc., must all be reported immediately.

And so we wait.  For seven to eight more days, I will be recording my leukocyte numbers as I receive them.  I think watching the numbers drop will be a bit more harrowing that the anticipation of watching them rise, as I know that one must come before the other, even with the risk involved in maintaining such a fragile state.

I realize this post is much more technical than those to date, but, I really want you all to understand as much as I do and be able to explain it to the best of my ability.  I’m not a doctor.  I’m just the messenger.  If my facts/figures seem a little off, maybe they are, but most of them are taken from his hand-written notes to me and detailed conversations regarding what I am to expect.

During this downtime, I will still be completely wired.  I am able to keep ALL of my electronics and headphones and rest my little heart out.  Time to heal.  Time to grow.  And, hopefully, time to touch a few more lives out there of people with MS, who think they’ve run out of options.  For me, that is what this blog is really all about.

Let’s lighten this up a bit.  Today, in the midst of the flurry of test results, consultations, instructions, my lunch came.  It included the usual 2 microwaved (or boiled) apples, which I’ve come to love.  You just scoop out the middles like applesauce.  It’s delish.  Well, as they always do, they throw on a piece of cow’s tongue, just to taunt me, I’m sure.  Today, I was feeling strong, brave, fierce and famished.  I doused that bad boy with salt and pepper and ate it like it was filet mignon.  It tasted exactly like roast beef and the consistency was the same as roast beef.  From now on, I’m all over the tongue.  Brooke wants more tongue!!  ha ha ha

Thanks all for hanging in there with me.  It’s going to be a long 7-8 days, but, we’ll get through it.  Mooooo.  🙂