Archive | October, 2012

Day 30: Look At Me, Ma!!

31 Oct

It has been some days since the doctor declared me MS free.  I knew that this meant that my body was going to begin the healing process.  I planned on a few signs along the way, and we have celebrated them here already: my cognitive thinking improvements – which returned to me the joy of reading a good book, the ease with which I found myself able to write longhand for more than ten minutes at a time.  Writing anything at all has become a much easier task for me, as I do not have to pause and search for words in my brain like I once did.  I also realized that I could handle the heat of a hot shower and that was great!

Now, let’s talk about what happened today when the good doctor gave me the green light to leave the hospital grounds and give this new, still a little wobbly, body a good road test.  I am just going to use bullet points here, and those who have watched me decline over the years will immediately know just how cool some of this stuff is.  Please remain seated until the end of the show, as I will expect a standing round of applause at the finish.  Are you ready?  Let’s go:

  • First off, it is cold in Russia.  I knew this, so I wore my coat.  That’s not weird for anyone.  What is weird for me is that, CANE FREE, I strolled along like a regular person and, WITHOUT EVEN LOOKING, found the zippers, buttons and snaps needed to bundle up.  All while walking, no pausing and with no cane!!  Anonymous people walked passed me, clueless as to the miracle they were witnessing.  I was dumbfounded.
  • There were puddles in the road, and I did not stop for a second to examine the puddle, decide whether to side step, grab Eric’s arm, or just go ahead and get my foot wet.  No, sir, I just stepped right over those puddles, like a regular person.
  • I have to repeat a bullet point here that this was all done CANE FREE and I was not swaying to and fro and making Eric’s steps miserable with his constant need to balance me.
  • The marketplace here is really just a row of shops and each one has about 5-10 steps to get in.  Because I was being extra cautious about germs, I used no handrails, but then I realized, I DIDN’T NEED THEM ANYWAY.
  • We stopped into one little shop to buy me a new pair of gloves, because I cannot walk with my hands in my pockets because I need my arms swinging to keep me upright.   Silly us.  I still got the gloves, because they were cool and, oh so Russian chic, but I still managed to keep my hands pocketed all the same, just because I couldn’t believe I could.
  • We went into a little cafe, the one Eric has been frequenting during his long days, and sat and had some tea.  I sat there, marveling at how easily I added sugar to my tea, and handled the tea bag with no sloppy mess.  I kept looking around, wondering if anyone else was noticing just how HUGE all this was, but they just kept at their chatting, totally unaware.
  • We popped into a little make-up shop, because I am still me and I wanted a splash of makeup to help me feel prettier about this bald head and I walked around that place and took my sweet time.  I am used to rushing from task to task to conserve energy for the day – always conserving, but not today.
  • It was about this time that the stem cells in my legs were really beginning to flex their muscles and I began to feel the fatigue of the chemo and all, so we began our walk back to the hospital.  Eric escorted me and my packages back to my room, both of us elated at what we knew was to be the first of many, many days with no more MS getting in the way of a good time.
  • I think that the best part of this whole post is that I am just getting started.  I still have to get over the chemo and I still have months of physical therapy and  rehab ahead of me.  I am just getting started and this is a pretty cool place to get started.

Now, you may applause.  Applaud God for His great and tender mercy.  For how He has bared his teeth at the enemy on my behalf and on behalf of my family and how He has given me this whole new shot at being me, only a different me.  I love you all.  Mean it.

Day 29: Beginning of the End

30 Oct

We are still on course for a November 6 release from the hospital, followed by a week of hotel bound out patient care.  Today I am receiving an IV that, according to the good Dr.Fedorenko, is key to my finishing the process healthy.  He explained that it would aid my immune system greatly and add antibodies which are necessary.  I tried, I really did, but I could not figure out what in the world he was saying, so I am just sitting here and taking the IV on the same faith I have popped every pill and laid down for every test along the way.

What he did say that I clearly understood, was that I must rest for thirty minutes to an hour after this IV (it is making me a bit sleepy), but that then I may actually venture outside of my isolation room and into the great outdoors if I am so inclined afterwards.    A cozy as this little room as been, I do feel like I have been a rat in a cage for these weeks and I am excited to step outside that door, though he stressed I must wear a mask.  Whatever dude!  I can handle a mask!  I get to go outside!!  With Eric!!  And we can hold hands!!

Sorry to get PDA all over your computer screen so early in the morning, but today’s news has me pretty excited.

After today, we will continue tapering my IV antibiotic doses and other pills which I have been taking to protect my intestines and mucus linings from the chemo.  I will be monitored very closely during this time to make sure that everything continues to hum along as well as it all has so far.

So, there you have it.  A short and sweet update because there really isn’t much to report except that God is good, Russia is lovely, Pirogov is as a fine a hospital as I’ve ever known, and I get to go for a stroll with my husband!

Thank you for your continued prayers for my family, me, and the good people of Russia.  I am eager to get home, but I want to soak up every last drop of this adventure for what it worth.  I am so very pleased that you all came along for the journey.  I love you all.  Mean it.

Day 28: The Gloves are Coming Off!

29 Oct

After ten days of being completely isolated from Eric, seeing him only occasionally, standing at the hospital grounds and waving up to my third floor isolation room, I was finally allowed visits with him, though only if he wore the hat, the mask, the drapes, and pretty much all the garb one wears when dealing with a tiny baby in NICU.

Those were nice visits.  We joked that it was like a proper courtship, because he would get all dressed to see me and then enter under the wary eye of my nurse who made sure we remained well spaced apart from one another for all visits.   He would bring me cookies, we’d watch a little American television, and then he would leave me with a friendly wave that would make June Cleaver proud.

Today’s blood leukocyte numbers rolled in and with it came the news that my darling Eric may now visit me with no more face mask and no more silly hats!  Still no touching, but this, friends, is progress!  We are now at one week until I am discharged from the hospital and will be staying at the hotel down the street, where I can pop in for daily out-patient visits.  Weather permitting (we have strict orders from the doctor about this one), we hope to get a little touring done and see some sights before we leave.

Dr. Fedorenko continues to marvel at the speed of my progress and at the near complete lack of complications.  I explained to him that I happen to know the One who invented science and that we are in regular communication regarding my status.  I think he is starting to understand me better every day.

So, that’s the happenings for today!  Plans are being made for dismissal, hair continues to fall, eyebrows continue their firm grip (go eyebrows!!), Eric gets to breathe freely in my presence, there is a hotel waiting with a bathtub in it for me, and I am mere weeks away from hugging on my sweet babies.  Phew!

Thank you all for following along, for your continued prayers and for your support.  I do not want to be glib about the serious nature of this dismissal from the hospital, as we will have to take great care in maintaining my health outside of this very well germ guarded facility, though we do take some comfort in knowing that we will not be far from the hospital should anything arise, prior to our return.

We look forward also to further visits with the brothers and sisters here in Russia that we have been blessed to meet along the way and do hope you will continue your prayers for them all.

Day 27: Sweetest English Word I’ve Heard Yet

28 Oct

While it is all well and good that I have had my chemotherapy, stem cells added and am now getting loads of immune support in the meantime, this cannot continue as my level of care for infinity, otherwise, what’s the point?  The word that we have been pensively waiting to hear is “engraftment.”  This means that the stem cells have not only returned home, but that they have grafted to their home hosts and are beginning the work of molding a brand new immune system for me.

Today the word came that my stem cells have begun engrafting.  This means that my level of care will change and I will begin to receive less immune system support via IV antibiotics.  I had been noticing an increase in pain in my legs and lower back leading up to this and the good Dr.Fedorenko confirmed that this indeed due to engraftment.  He also expressed his great pleasure that I continue with my sweat filled nights of detoxing, so he has kindly added an IV of fluids + low grade narcotic to my regimen.  This has aided my comfort level considerably.

As far as other symptoms and concerns of treatment go, I remain fever free, in moderately good health, my weight has gone up as my appetite has come back with a vengeance (the morning porridge lady has gotten used to my repeat requests for just a little more, please.)  This has not been an easy therapy, by any stretch, but I believe that I have had the best of care and have experienced the best of possible outcomes from each step of the way.

My hair held on longer than most thought it would.  Even the doctors suggested I may have a genetic propensity to keeping it, as some small number do.  All hope was dashed in an evening when a quick scratch of my head yielded a confetti spray of hair all over my computer screen.  This has continued (though now contained in an aqua hair net) and I suspect will finish with a squeaky bald head in two days time.  Bonus for us ladies is that underarm hair is included in the package, so there are always silver linings. Sorry to report that leg hair remains a staunch companion.

Thank you all for your continued prayers for me in this time.  I love you all.  Mean it.

And I do so beg of you to add your fervent prayers for our dear brothers and sisters in Russia to your list.  They are truly a remarkable people.

Day 26: Where Do We Go From Here?

27 Oct

Now that I am feeling somewhat recovered from the effects of chemo, and am getting some energy from the gaining back of my stem cells, I thought it important to talk about what the long  term implications are of this treatment I have received.

When I leave Russia, my health will likely not appear much differently than it did when I left.  Do not anticipate me racing off the airplane with a whole new zest and energy just yet.  I have lesions, which have been significantly calmed since I have been here and I know that that process will continue for up to 18 months.  Further, I have a certain degree of scarring, and I am hopeful that those will, at the least, be mended to some degree.

The degree to which this treatment heals me is in the hands of God at this point.  I am prepared for complete healing, and prepared to be content with just feeling better than ever.  Both are now possible and that gives me great peace.

I will be closely monitored by a local hematologist upon  my return and this will be a key part of how far I push myself for physical recovery, as I do not want to cause my immune system any undue stress.

As I have been monitoring my body for twinges and signs of healing, I have noticed muscles, which were once wrenched with spasms suddenly relax and now kind of jiggle with lack of use.  I intend to rest for a bit when I return, but will be beginning physical therapy as quickly as possible to retrain my body how to stand, walk, sit, climb stairs, and even stand at a counter without always having to compensate for MS and the ways it contorted me.  This will be a lot of work, but I am excited that I get to do it.

Fatigue was among my greatest disabilities with MS and it will take time before I can sort out recovery from chemo fatigue from recovery from MS fatigue.  This too, is an exciting prospect.  What new things will I have the energy for?  What new challenges will I get to take on?  After years of wondering what was going to be next to go, it is a thrill to wonder what will be next to come.

One symptom that hampered me from day one of diagnosis was that heat became intolerable to me.   In my youth, I would spend hours in a hot bath, refilling it over and over and enjoying a good book.  I now know that I can enjoy a good book once more, and I suspect that a nice hot bath may not be far behind.  I still have a hickman line attached to my chest, so my showers must be brief and careful, but the heat is a pure pleasure and I leave the shower feeling none of the effects, which would have once forced me to have an immediate sit down.

I look forward now to camping trips with my children which are not so carefully planned around the Texas heat, and days sitting on the back porch with an iced tea and no constant monitoring of my heat exhaustion. These are real treats to me and I can hardly write about it without tears.

I may not run a marathon, or maybe I will, but what I do know is that I will get better than I have ever been and that is a priceless gift.  Thank you all for everything you have done to make this possible for me and my family.  I love you all.  Mean it.

Please continue to pray for the brethren in Russia.