This Girl is on Fire….

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This Girl is on Fire….

Though my days have become rather mundane, there’s so much going on under the surface, it actually keeps me stoked as my numbers drop and this process of engraftment is soon to take place.  Well, at least, in a few days or so.  I want to explain why my leukocytes (leukocyte = t-cell) (see pic below) are dropping.  It’s because they are continuing to die due to the high-dose chemo.  In killing the t-cells, we are killing the MS that lies within the t-cell.  So for optimum depletion of the MS, the leukocyte numbers must go as low as possible so that my stem cells will be able to launch my new immune system with no defenders getting in their way.  I’m sure there’s some football analogy that would come in handy right now, but it escapes me.

This is a t-cell.  My MS resides within my t-cells.  That is why we kill them with chemo.

This is a t-cell/leukocyte. My MS resides within my t-cells. That is why we kill them with chemo.  Nasty little bugger!

Over the last three nights, and for the first time since receiving my high-dose chemo before transplantation, I’ve begun to have night sweats.  Moscow’s “White Nights” have become Brooke’s “White Hot Nights”.  You wake up each night, soaked with sweat from the neck down and you repeat this two or three times.  Dr. Fedorenko said that is the chemo at work.  When we were discussing the fact that my appetite continues to hold strong, he reminded me that even though I am carb loading, the chemo is working at a way faster rate of speed  than my level of food consumption.  He also mentioned that though I’m mostly sedentary throughout the day, my body is actually in the process of running a marathon.  Therefore, he says I can expect to lose some weight during these next two weeks.   Perfect.  I’m five pounds more than when I walked in the door, and I’d be happy to get back to my fighting weight.

I continue to sleep for only four hours per night.  Two at the beginning of the evening and two in the morning.  The night sweats don’t exactly make for a solid night of rest.   When I’m able to, I try to take cat naps during the day.  The doctor is satisfied with that.

IMPROVEMENT…EXCITING!:

During this inflammatory period of time, overall, my symptoms have gone back to their norm, which should change over the next 3-6 months, but that could begin to change while I’m here.  My fingers are incredibly numb and lack dexterity and my legs are very weak, but I’m holding my own.  However, yesterday, a symptom that has plagued me for over four years, magically disappeared.  I have suffered from what is called “The MS Hug”.  It is a tight banding that wraps around your ribcage from front to back (like a charlie horse).  It feels exactly like wearing  a corset, making it difficult to take a deep breath, difficult to speak, difficult to sleep, and, interestingly, difficult to eat anything other than small portions of food.  The tightness often turns into a painful spasm over which you have no control.  Basically, you have to ride it out.  Could be five minutes…could be an  hour…could last half the day.

Upon admission to the hospital, I quickly came to find that the eating habits and timing of meals for Russia, vary greatly in timing and portion of meals compared to our U.S. traditions. (see pics below)  You are served breakfast at approximately 9:00 a.m. that consists of oatmeal, porridge or a square of scrambled egg casserole with two slices of bread.  At 12:00 noon, you are served a snack that typically consists of two boiled apples and/or pears, with a small side of meat (yes, tongue) and two pieces of bread.  Then at 2:00 p.m., you are served lunch.  Lunch is the biggest meal of the day here, and when I say big, I mean big.  Too big for this corsetted chick to eat without having to endure some major pain due to muscle spasms.  As much as I’m starving and need to eat to sustain my weight, I end up throwing most of it away, or pay the price in a couple of hours of pain.  Dinner is served at around 6:00 p.m. and is a minimal offering of rice soup and bread.  I supplement during the evening with the protein shakes provided by the hospital.  They’re just enough to get me through the night and he encourages drinking them to complement your overall health.

Breakfast.  Oatmeal, some kind of bologna and two pieces of bread with butter.

8-9:00 a.m.  Breakfast. Oatmeal, some kind of bologna and two pieces of bread with butter.

12:00 noon-Snack Two boiled apples, two pieces of tongue, one hard-boiled egg.

12:00 noon-Snack
Two boiled apples, two pieces of beef, one hard-boiled egg.

12:00 noon - Lunch Vegetable soup, a boiled piece of chicken, tons of cauliflower and a chicken croquette...with bread.

2:00 p.m. – Lunch
Vegetable soup, a boiled piece of chicken, tons of cauliflower and a chicken croquette…with bread.

That all changed two days ago.  Honestly, I didn’t even realize it the first day.  It was after yesterday’s lunch that I had downed like I hadn’t eaten in days and realized that I had no spasms, pain or distress at all…just a full stomach and a satisfied appetite that I realized what was going on.  That’s how this HSCT thing works.  It sneaks up on you  when you least expect it and leaves behind gifts that may seem so trivial to a non-MSr, but are like winning the lottery for someone who’s ever had to live like that.  This is huge for me.  No more eating my appetizer at a restaurant and then having to have them box the entire entree to take home.  Heck, I may even be able to have a side salad.  Imagine the possibilities!!  Yay!

JUST FOR FUN! (hair still hangin’ tough)

Snapshot_20130520_9

If you ever wonder how I look at 3:00 a.m., this would be it. This girl is on fire!!

MY LEUKOCYTE NUMBERS ARE IN!!!

They are the same as yesterday at 0.13.  He said that is completely normal, especially given that they had dropped a day earlier than expected in the beginning.  He said they will flatline within the next two days.  Otherwise, all of my other bloodwork is outstanding.  I remain very healthy, happy…and blessed.

3 responses »

  1. Sounds like things are going fantastic for you! I think the night sweats are from dreams of Doug and what you are missing. Either that or just the Change, but you are toooo young for that at 23 years old. Cheri and I Keep you in our prayers and wish you all the best.
    A cheerleader should remember some football analogy to use, But again it has been many years since you yelled on the side lines for us. I would like to hear some of those cheers again some day Cheri said you and she can probably come up with some of the old Cheers. Good luck hope to see you home soon and doing well.

    • Enough with the “change” talk, Steve. One hurdle at a time! ha ha Thanks for your support. Who knew all that “country-fied” cheerleading would come in so handy. ha ha

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