The Tide is High and I’m Holding on…

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The Tide is High and I’m Holding on…

What a difference a day makes here in Moscow.  And, I mean a BIG difference.

For those of you who know me, personally, and now for those who don’t, it’s no secret that I’m not the most patient chickadee in the hen house.  When I get something in my sites, I’m going to get it, and you won’t find me piddling around to wait for it.  I’m going to take care of it myself.  SET THE GOAL.  REACH THE GOAL.  DONE!  Who knew that my personal style of living would resonate into this medical adventure to rid myself of MS, but it has served me well during my stay.  Seriously, there’s really only so much that I can control with this leukocyte situation.  I can be as stubborn as an ox, but if my leukocyte numbers don’t feel like rising, it’s not like I can put the smackdown on them.   You simply must wait.  Wait is a four-letter word to me.  Grrrr.

Yesterday, my leukocyte levels were at .28, with an optimum goal for engraftment of 1.0…SET THE GOAL.  About an hour ago, Dr. Fedorenko arrived with my results (earlier than normal).  He said that my leukocytes were now at .23 (lower than yesterday).  My heart sunk.   I said “.23!!!  That’s lower than yesterday!”.  He replies “No, no, no, they are 2.3!”  The original goal, which he did not think I would reach for 2 more days was 1.0…REACH THE GOAL.  Not only did I reach my goal, but I more than doubled it in one day’s time.  DONE!   Don’t think for a moment that I’m taking credit for all of this.  With a cheer squad like I have, there’s no way I wasn’t going to reach that goal.  But, who knew it would be overnight?!

On the turn of a dime, everything changed.  He continued to ramble on that my isolation would end tomorrow, they would return my clothes to me tomorrow and that mom would now be able to visit, again.  She will have to wear a mask.  I will not.  Then, another lifestyle changing statement was made by the good doc.  He turned around and said “And, we will be shaving your head, tomorrow”.   Looks like I’ve finally got that date with Nurse Hatchet.  It works out perfectly, because then I will have access to the hats and scarves that I have in my luggage.  Of course, I will be featuring the “hair raising” event on tomorrow’s blog post.

Then what?  He said that beginning Monday, the 27th, they will begin reducing immune-supportive medications for about 4 days in order for my new immune system to thrive on its own.  I will then receive my first of 4 infusions of Rituximab, which, normally, all of his patients receive only one infusion, here, before they depart that targets B-cells.  Due to my history of MS that has been a non-responder to 4 typical MS drugs, I will be receiving 3 more of those infusions back in the States.  It is not mandatory, but it will help to keep any rogue B-cells from getting any crazy ideas about trying to take the lid off of my MS seal.  Basically, it is a triple-precaution, that is not mandatory, but wise.  It’s an additional 15 hours of my life within this year, that I’m sure I can squeeze in some kind of shopping trip to ease the inconvenience of it. 🙂  No matter the case, the MS will be halted when I leave this hospital and before I get those infusions.

By the end of next week, I will be getting released from the hospital a little ahead of schedule, and mom will be helping me to navigate the streets of Moscow in search of souvenirs, and a normal meal.  I will be weak, and the doctor says that dizziness/weakness will remain for up to 3-6 months due to the side effects of chemo.  Some of my MS symptoms will worsen before they improve due to the residual inflammatory issues that come with chemo.  But, I already knew all of this.  So, yes, I will be taking my time next week.  I have a small checklist of places I would like to go and they can all be reached by cab.

As far as my current symptoms go…for almost five days, I have lived without the MS Hug that has plagued me for years, and, when I have sporadic reprieves from my chemo weakness, my right foot continues to try to fight its way back into its correct position.  Also, clonus, which can cause an uncontrollable trembling of my feet when I place the “ball” of my foot on the ground, has begun to dissipate.  Small symptoms.  Huge to me.

I’ll leave you with this.

In the words of Blondie…I’M NOT THE KIND OF GIRL WHO GIVES UP JUST LIKE THAT!

12 responses »

  1. Who else but you, the one soon to be bald, would quote someone with a name like Blondie? When Doug’s Aunt Marlene lost the hair on her head she also lost all her body hair, including the downy hair that everyone has on their face. As a hairstylist for 37 years you would think the loss of the hair on her head would have been the thing I would notice the most. Interestingly enough, her face is what had me amazed. Her skin was B-eautiful, as soft and smooth as a baby’s behind. And don’t be surprised if your hair grows back with some curl–fairly common. This could get interesting! Continued love and prayers.

    • Not looking forward to curly…not my style. But I would like to go back to being a toehead as I was when I was little. I’ll probably end up with jet black spiral curls. ha ha I think your lil’ prayer chain has been working overtime…especially last night. Wow!

  2. You truly need to write a book Brooke…you are one truly amazing and inspiring woman! So happy for you 🙂

  3. You ARE an author… I have read every one of your diary entries. A really dear friend Introduced me to you as her new BFF. She hangs on your every word & now so do I!!! (I love exclamation points, too!). She is leaving Oklahoma for Russia in mid June. You are in our prayers, please put her in yours.

    • I know exactly who you are speaking of and she is a hoot! She’s next in line over here and I can’t wait for her to have it done. Lisa is never far from my mind. Rest assured, your friend is coming to the right place. 100% guaranteed that she is going to rock it, Oklahoma style!

  4. I wake up each morning eagerly rushing to the computer to see your latest post. Through tears of happiness I feel this journey has been taken by all who read your blog. Without the black and blue marks, of course. I really do hope you write a book and get this information out there to some who are without hope. Your people in “The Cove” are truly inspirational by the way they support ALL in need. Keep up the good work, can’t wait to see you at home. We are going to “The Cove” tomorrow and we will all have a celebratory adult beverage in your honor at Haley’s wedding on Sunday. Loving you and praying from HC. KEEP CALM!!!

    • Patti, let’s not forget that a large Erie contingent played a role in me getting here as well. I know I don’t forget. You know, sometimes some Myers sense of humor could come in handy around here. I’m so jealous of you getting to be in the Cove at this beautiful time of year. Mom and I will be heading home in 2 weeks. Thanks for raising a glass in my honor. This time next year I will be joining you in doing that. Thank you to the entire Harbor Creek cree!

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