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.

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8 Responses to “Day 35: A Bit of a Review and a Bow”

  1. Brooke Slick November 5, 2012 at 8:06 am #

    Amy, your blog has been fluid, comprehensible, and invaluable for those of us seriously considering HSCT. You’ve certainly raised the bar for any HSCT bloggers who want to share their experience. As they say…”You can’t make this stuff up!” Thank you for offering to ask Dr. Fedorenko our questions. I am going to begin to compile a list, most of which I think you will be able to answer on your own, with maybe a couple for Dr. Fedorenko. My appt. with my neuro doc is Monday, 11/12/12, wherein I will be discussing HSCT with him in detail. That will be step one of my plan. Step two will be discussing finances and logistics with my family. I will send my list of questions to you via e-mail, as you may have duplicate questions from those of us seeking answers, that you will be able to summarize when you list the answers on your blog. I hope you had a fabulous walk with your husband, dreaming about what is yet to come for you. Onward, Christian soldier!

  2. Janette Scarborough November 5, 2012 at 2:17 pm #

    I am quite pleased that you’ll be taking time off and hitting the “must rest and worry only about Amy part of the recovery.” That clarifies to me that you are using some good common sense and listening to orders, which I am sure makes your mama quite happy, (me too). Anyway, I will be listening from time to time and continuing to lift you up in prayer. I will close by thanking our Great God for His wonderful and mighty works of grace, love and healing. Take care girl. God is good . . . all the time!

  3. Aunt Lori November 5, 2012 at 3:08 pm #

    Put the computer down and back away slowly. It’s time to take care of Amy.

  4. Pat Walt November 5, 2012 at 3:42 pm #

    A huge Praise our Awesome Lord — and a huge AMEN to your Aunt Lori’s advice! God Bless!!

  5. Ruth spearing November 6, 2012 at 6:09 am #

    Hi could you ask what the earliest time after
    Diagnosis would be if you wanted this treatment?? Have been reading daily and you have been in my thoughts. You are a strong lady and thank you for letting us follow your treatment. Has been so insightful!

    • ericswife November 7, 2012 at 7:48 am #

      I think I can answer that without buying the doctor a steak dinner. He would say, “If you have MS, get it stopped.” There are other variables you may need to discuss with him on your own through e-mail, but I am certain on this one point.

  6. Mike Glenn November 6, 2012 at 4:36 pm #

    Thank you, Amy! Please know we will continue to keep you in prayer….Have a safe and uneventful trip back to the USA…..I give God thanks and praise for all He did in leading you and the wonderful Russian team of doctors and medical personnel to connect….Take the time you need to rest. You have inspired us and have lifted us up along this journey….and what a journey it has been….WOW! Sign back on when the time is appropriate…Get much rest in the meantime and take care of YOU!
    You are loved and prayed for….
    MIKE

  7. Cameron November 29, 2012 at 9:29 am #

    Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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