Archive | November, 2012

Day 35: A Bit of a Review and a Bow

5 Nov

I am not a writer by profession, but I think it should be clear by now that I am a pretty serious hobbyist about the craft.  For those interested in HSCT, I wanted to attempt a concise post which will answer questions about my time here.  I will try to keep it brief.  Dr. Fedorenko has told me that many of you have contacted him and that he is very pleased with that, though he also suggested that I need to take a few months off because I am about to hit the “very tired, must rest and worry only about Amy” part of recovery.  He is a very good doctor and I intend to heed his advice.  This is Day 35 of my time here and I will be discharged on Day 36.   After that, you can find me elsewhere on the internet, but I will be leaving HSCT, Pirogov, and MS behind for a good while.

Week One at Pirogov was filled with tests.  My husband and I checked into a cozy room on the second floor and I was wheeled off to a dizzying array of offices for exams of my kidneys, my eyes, my lungs, my heart, my sinus cavity, my intestines, and a full MRI of my brain and spine.  These tests began on a Monday morning and were concluded by Thursday.  I began treatment Friday evening.  Treatment meant that I began receiving a four day protocol of injections at 11pm and 3am to stimulate my stem cells to grow.  This was a bit painful, but there’s a shot for that, if you are a tenderfoot like I sometimes can be.

Week Two I was still in my second floor room with my husband and was given a line into my my main vein (this is not yet the hickman line) for the purpose of pulling the stem cells from my body using the Apheresis machine. This line was left in my neck for the night so I could rest from the procedure and then the next morning I was taken to the Apheresis room where the stem cells were taken.  Perhaps my experience there was unique, but I found that time lying there to be very painful.  My back and hips hurt terribly and there seemed to be little relief available to me during that process.  I was sent back to my second floor room to rest and where they removed the line from my neck.  It left a wound which had to be covered for three days, thus ending any proper shower I would have for the foreseeable future.

After a day’s rest from the Apheresis process, I was taken to the third floor where I would begin the chemotherapy regimen.   This is when my hickman line was installed.  I was anxious about that procedure, but found it to be not so bad and grew quite used to having the thing attached to me after a day or two.  Eric was still allowed to visit my room during this time, though he remained on the second floor.  I received four days of chemotherapy and found only one day of true nausea, as the good nurses constantly stayed on top of any symptom I might have.  I was pleasantly surprised at how well my body handled this part of the process, as I had heard varied horror stories.  I was mostly just tired and happy to stay in bed.

Week Three and my blood tests revealed that the chemotherapy had done its job and my immune system was properly shut down.  At Pirogov, this means that my room became aseptic and only doctors and nurses were allowed admittance  and even then only after very strict disinfection protocol.  I will always marvel at the lengths they went to to keep me safe during that time.

With my immune system properly shut down, my stem cells were returned, and then we began the days of waiting to see them engraft.  I believe I engrafted on day 9.  Eric was not allowed into my room at all during this time, though Pirogov graciously allowed him to stay on the second floor and he was kind enough to stand outside and wave at my third floor window from time to time.

Weeks Four and Five became a routine of daily IVs to assist my growing immune system, and slowly, Eric was allowed to return, though he had to remain fully masked and covered with all the garb one expects of a surgeon until about the end of week four, when protocol relaxed, as I had engrafted and my new immune system was beginning its good work.

And now, I sit at the end of week five.  I will be discharged tomorrow.  Eric and I will go to a local hotel, where I will continue to rest, as I have found myself growing more tired each day.  We will continue to visit with Dr. Fedorenko to monitor my progress and make certain that all is well before we head back to the United States on Nov. 13.

Eric and I will be having a meal with Dr. Fedorenko before we leave here and I warned him that I was coming with a list from my blog readers and e-mailers.  This is your big chance.  I know that several of you have asked me questions through e-mail, Facebook, and here.  I would appreciate it if you could please leave your questions for him in the comments section of this post and I will ask him as best I can any questions you may have about this procedure, though he did remind me that you could always e-mail him yourself.  He is a very easy to communicate with doctor and I think you will find yourself quite surprised at the ease and haste with which he responds to e-mail.  I will make a post before leaving Moscow with his responses to anything you may ask in the comments.

I will continue occasional updates here as my health changes and as I see fit, but I must say that I am pleased to follow the good doctor’s advice and take a bow.  The sun is shining in Moscow today, and I am off to take a walk in the woods with Eric.  Doctor’s orders.

Love you all.  Mean it.

Day 34: A Little Tired, but a Lot Blessed

4 Nov

Here’s the thing with that lovely hickman line: it daily juiced me up with immune support.  Do you have any idea just how many great things your immune system does all by its little self all day long and how sorry a shape a person is in when it gets tweaked back down to a trickle?  Do yourself a favor, if you have a good immune system, and tell God that you really appreciate its quiet service.

I had my last dose yesterday morning, and then was cut off like Otis at the bar.  Waking up this morning, I felt like I had been hit by a truck.  As is to be expected, some of the ol’ MS symptoms kind of toyed with me.  Not anything like in the past, but I was reminded that elements of it still linger and will ebb and flow as I go through the next 12-18 months of recovery.

Dr. Fedorenko gave me a long acting shot of steroids, and while I am not a particular fan of steroid side effects, I was thankful for the renewed energy they gave and what I was able to do today as a result.

We were able to make arrangements with one of my doctor friends to pick us up from the hospital this morning and attend the nearest place of worship.  This is what I want to talk about, more than missing the immune support.

It is a congregation of about 120 members, but they must meet in two services because their facilities are very cramped.  Many of the members must travel up to an hour to get there.  There was a gentleman there who was kind enough to translate many portions of the service for us, but I must admit that I spent most of my time just relishing the common knowledge that we were all there communicating with a God Who could understand us all and that we all, though unable to communicate with one another, were all in agreement about Who this God is and what He is capable of!

Eric and I had the opportunity to visit at great length with some of the members and will likely be able to meet with them again during the next week after I am released from Pirogov.   Please continue your prayers for our brothers and sisters in Russia, that their faith may be bold, that their stand be firm, and that their message be spread in this remarkable country.

I will forever be grateful that God saw fit to send me to Russia for my healing.   Thank you for your continued prayers for my healing, for this journey, for my family and for God’s people in Russia.  Love you all.  Mean it.

Day 33: Footloose and Hickman Free

3 Nov

As promised, my hickman line was removed today.  (It was more odd sensation, than painful, just in case any of you future HSCTers out there are also needle weenies like me.)

Once it was removed, Dr. Fedorenko asked me to lay still for forty minutes before moving.  He then popped back in five minutes later and and says, “How are you feeling?”  I tell him that I am just fine.  He says, “Then, go for a walk!  Get up!”  He’s such a kidder.

I went downstairs to Eric’s room, where the poor dear was still sleeping, and made him get up to hit the road with me.  I bundled up, because I was certain that it would be very cold out, this being Russia and all, and we decided to walk to a Lebanese restaurant to have some lunch.  Lunch was fabulous, the restaurant lovely, and I could write a whole post about how great of a date it was, but this blog is about going ninja on MS, not fine dining, and I have to tell you about a discovery I made about myself while we were out.

It turned out that I was was over bundled for the walk.  Just minutes into it and I was a hot mess.  I am going to stop here to tell you what it is like when an MS patient gets hot, particularly when I would get hot:

Within minutes of getting too warm, my cognitive thinking, which was already shaky, would get real foggy.  I would start to get anxious, irritable, frustrated, and almost immediately would have to end whatever activity I was doing.  While my brain was having its own little meltdown, every symptom of MS I experienced would immediate triple in effect.  My already unsteady gait became a terrible stumbling shuffle, my hands became near impossible to use and the spasms in my back would become painful to the point of tears.

This did not mean that I could avoid getting hot.  It happens.  You go to a store where the heat is up too high, you step outside in August…in Texas, you wear a sweater that turns out to be a very poor choice, but you are in church and have to just deal.

It might make sense to someone who never lived in a body like that that I could just figure out some way to cool off and then all functions would return to “normal,” but the reality was that, once I got hot, I was done.  For the day.  This is why I was the baseball Mom who cheered only from the comfort of her shaded chair and sometimes from the AC of the car, but never standing right behind the catcher and clinging to the fences.  This is why my kids learned to push themselves on the swings as tiny little things, while their Mom sat in the shade, barely hanging on to the tiniest bit of cool I could find.  This is why I prepared meals in a hot kitchen, and then did not sit to enjoy them with my family, but rather went to my room to lay down and rest.  I was done and there was no amount of cooling down that was was going to be restorative.  I had to fight hard to not be cranky, bossy, irritated, and gruff with my loved ones and I often lost that battle on a bad day.

What happened today, was that I was over bundled and I made it to the restaurant, where I took off my coat, removed my hat, and immediately cooled down.  I was not confused about where I was, what I was doing, who I was with, or what I wanted to eat.  I was remarkably cheerful when the waitress approached our table and I was overwhelmed to the point of tears when I realized just how much I have lost with my family and my children and my friends over the years as I have dog paddled along.

I had accepted that I was just someone easily rattled and confused by the littlest things and I had accepted that I was just wasn’t that Mom who hung out and watched the kids on the trampoline or in the pool.

Sitting down for that meal with Eric, opened a floodgate for me of realizing just how much MS stole from me, and just how much I have already regained.   It is a maddening thing to have your brain, your legs, your arms, and even your personality seize up on you and I am kind of mad now when I realize just how much of that I had come to own as my character.

By God’s great mercy, I know that I was not a tyrant always, but I do know that I battled hard everyday to maintain control of a brain that just did not want to work.

Today, I did not battle.  I had a lovely meal, with my wonderful husband and now I weep and blog about it and simply cannot wait to get home to my children and sit in hot kitchens, making cookies without getting angry eyes and take walks with them that don’t end with me collapsed in my bed and done for the day.   There are so many things that I am now looking forward that I didn’t even know to plan on looking forward to.

I also wore mascara for our date.  And now it is all ruined.  Love you all.  Mean it.

Day 32.5: Where Was I?

2 Nov

Oh, yes.  There was stuff I was going to talk to you about, but we were so rudely interrupted by that nasty 24 hour migraine.  It turns out that those just go along with the territory and have nothing to do with MS, so I will just have to dodge them as I can.  Today’s migraine dodging was a little exciting because it involved a traffic jam in Moscow in which the van carrying my migraine medicine was involved.  Traffic jams are not exciting, but something about a traffic jam in Moscow, when life changing medicine is in transport, sounds like a cool movie and I got to have a small role in that movie.  We all know how I love a good drama.

Migraine is all gone and now we are going to talk some more about the science of HSCT and what it means for the long term treatment of patients like me and others who suffer from varying kinds of auto-immune dysfunction.

At its core, most auto-immune diseases are caused at the genetic floor.  This is where DNA sits and there is not yet a way to actually compromise DNA to remove that genetic floor.  This means that, like cancer, the disease can possibly reoccur, given the appropriate environment.  I don’t mention this now to be a total downer, but it is worth mentioning that, while auto-immune dysfunction can be stopped – sometimes indefinitely – it can also reoccur.

Dr. Fedorenko and I had a long talk about this recently, as he has a patient here for her second round of chemotherapy after six years of being MS free.  The variables are many as to what would cause this to happen.   He stressed to me that good diet and exercise were important, but he also seemed to feel that the stress of pregnancy was a great concern for relapse.  I have a lot of great plans on my radar, but that is not one of them.

This is not new science, and the numbers of people treated, and maintaining their lives disease free, are still being computed.  Many are holding strong at 15 plus years.  In my book, this gives me my kids’ entire time at home with me and a good many more, though I think we all know that I plan on being a “one and done” HSCT patient.  I never believed I was going to have MS forever and I feel certain that I am done with it now.

After today’s time spent feeling miserable, I was finally able to get up and get out for a bit of a walk with Eric.  It feels good to stretch out my legs and feel those stem cells, though they ache, course through my marrow and knit together a new immune system.  I continue to believe that I got here just in time and I look forward to the coming months and years as I learn how this new body works.

My blood count numbers continue to rise and there has been no hint that I will be in need of any kind of donor blood or platelet assistance.  In fact, Eric was able to give my head a nice clean shave today and the tiniest nick I received was resolved almost immediately.  It’s almost like I was made to come through this as a model patient, if I do say so myself.  (My eyebrows remain.  If I could high five them for their efforts, I totally would.)

I will continue to take it slow and easy.  My hickman line will be coming out tomorrow and I will spend a few more days in the hospital while that heals up.  After that, Eric and I will be going to the local hotel where we intend to continue carefully stretching out my new boundaries, without pushing myself too far and losing ground before we make the long flight home.

Thank you all for your continued prayers.  This has not been easy, but it has been so very important, and I know that my journey would have looked a whole world different without God’s hand on me and your prayers on my behalf.  I love you all.  Mean it.

Day 32: Not So Fast

2 Nov

Well, I thought I was going to lose the hickman line today, but it was decided that I would keep it for one more day and enjoy just a bit more immune support before heading out into the real world.

This has led me to another day of mostly napping.  I also happened to get visited by a migraine last night and it just won’t let go, so that has made this end of the week party even more exciting than I could have hoped for.  Pardon me for the sarcasm, this Pollyanna good attitude has a limit and migraines appear to be it.

While the migraine is very uncomfortable, my head has now become smooth as butter and it makes a good head massage easier than ever.  That’s a positive benefit I never counted on and it is quite nice.

There are things I wanted to report to you all today, but this migraine has seriously wiped out anything I can imagine thinking to say.  I would appreciate prayers for relief and perhaps we’ll get one of those .5 posts out of me that I am so fond of delivering.  Beyond that, I am back to my naps and head massaging.

Love you all.  Mean it.