…Being of Sound(ish) Mind…

3 Jun

When I read and studied prior to my trip to Moscow, I often saw the time frame for recovery of 12-18 months.  In my MS riddled body, I read that as 12-18 months to recover whatever I could from the MS.  What I did not read was that it was also 12-18 months to recover from the actual procedure.  I would do it all over again in a heartbeat, but I must admit that I was quite naive as to the true extent of recovery one’s body must go through after chemotherapy and transplant.

As there are essentially two different recoveries happening in my body, I wanted to write a post that could cover each.  Let’s start with the chemo recovery and then get to the fun recovery, shall we?

Chemotherapy Recovery:

If you are drinking coffee or anything, take a swallow before you read this next sentence or else you are going to spray your screen.  All set?  I actually thought that hair loss would be the hardest part of post chemotherapy recovery.

When you are finished laughing, we can continue.

Seriously.  Now you are starting to border on mean.  Try to control yourself.  Ahem.

Hair loss has been the easiest and most tame part of post chemotherapy recovery for me.   I anticipated a certain degree of hormonal disturbance, but I was in no way prepared for the way my hormones went through a meat grinder, followed by a turn under a steamroller and then a toss in the fire.  While I have experienced some physical signs of hormonal upheaval (heavy and irregular cycle), it has been the extreme emotional toll which has taken me to the mat.

I feel completely tapped out of emotional energy.  I can easily handle the normal ups and downs that a regular day throws my way, but toss in one little kink and I go off the rails.  This has gotten smoother as the months have passed, but I still find myself a bit shaky if I am made to handle any emotion which goes beyond mildly irritated or mildly happy.  I experienced this with a slightly different flavor back when I had MS (I seriously can’t use that line enough, “back when I had MS”), but it was different because I still felt like I had my hands on the reins.

Sadly, because I was not well prepared for this side effect, neither were my close friends and family.  In the first six months after my return, I turned very introverted and had little to no desire to be around people and no words to describe why I felt the way I did.  I am now stalled out with 9 voicemails to listen to, 17 e-mails to respond to, and 4 relationships which need serious attention.  Slow and steady may be the pace, but I believe I will see the other side.  Patience was never my best quality.

Aside from my hormones getting back to their regular levels, my WBC is now completely in the normal range and I am in pretty good shape.

Let’s get to the fun recovery update, m’kay?

Fun Recovery Update:

Summer is now upon Texas at full blast and I have been really enjoying my body’s response to the heat.  I sit through my son’s entire baseball games and even get up to pace back and forth behind the bleachers when things get hairy on the field.  The difference between this season and last is beyond remarkable.  Before HSCT, I know I said that if heat intolerance was the only thing HSCT fixed, I would do it.  Well, I got that and a whole lot more.

My balance is incredible.  There is no way I could pass a field sobriety test before HSCT, because I could not walk a straight line unaided – let alone put one foot directly in front of the other in the heel-toe manner I always see on “COPS”.  I have no desire to test my abilities in an official capacity, but I am certain now that I could pass with no problem.  I walk smoothly – no cane, no furniture walking, and no stooping over.  My PT said I had a little too much sway in my hips, but I told her that was because I’m Southern and has nothing to do with MS.

My left arm and hand continue to be weak and a bit numb, but I believe the strength is improved on what it was last year.  I trust my left arm to hold a baby this year and did not last year.  I still do not trust my left hand to find my keys in my purse or to even hold that purse using only my fingers, but I hope this improves with strength training.

I have not noticed any improvement in my vision, HOWEVER, I have noticed that I rarely see the flashing lights I used to always see when I closed my eyes.  Any MS patient who has had optic involvement will likely know the lights I am talking about and understand the all caps on “however”.

Cognitive thinking has also improved and continues to improve.  I am not able to read as much as I did in Moscow, but then I have far more on my plate here than I did there.  When I do get a chance to sit and read, I am able to do so with very little to no difficulties.  In addition, I am now tackling my “white whale’ of dramatic passage memorization and am finally getting to work on the book of “Esther”.  Performing “Esther” will be quite the feat, as it will essentially be a 35 minute monologue which will require every bit of MS shirking that I can muster.  I’m pretty excited about it and ever so thankful that God has granted me this opportunity.

The pain in my back and legs has not vanished completely, though it does not affect me anywhere near like it used to.  It nags more than tortures now and that is pretty substantial.

I am certain I could go on, but I have already far exceeded my personal 800 word limit (my gift to those with short attention spans) and will sign off for now.  Thank you for your continued prayers for me, my family, the people of Russia, and the auto-immune compromised patients who are finding their way to Russia and other HSCT facilities.  I love you all and I really and truly mean it.

 

 

 

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About This Blog

1 May

My name is Amy Peterson.  In 1995, when I was 17 years old, I was diagnosed with RRMS (relapsing/remitting multiple sclerosis.)  This startling news spurred me on to become the scrappy and occasionally hilarious woman I am today at 35.

The level of disability caused by MS is rated on a 1-10 scale called “EDSS”.  On this scale “0” means no MS disability at all and “10” means dead.  In 1995 I was an 8.  I recovered to about a 3 and remained there with some days better than others for the next 15 years.  In 2010, I began to notice a steady decline with no sign of an actual attack and started to wonder if perhaps the disease had turned into SPMS (secondary progressive multiple sclerosis.)  Decline was confirmed by my neurologist, though an actual diagnosis of disease change was not made because I hightailed it to Moscow, Russia before the decline could continue.

I entered the hospital in Moscow in October 2012.  By this time, I was a 5 on the EDSS scale and needed a cane to walk for long distances.  Sadly, 100 meters was a long distance.

My bone marrow transplant (bone marrow taken from me prior to chemo – no donors) was complete on October 17, 2012 and I left the hospital on November 4, 2012, returning to the United States on November 13.

While still in Russia,  I found that I had no need of the cane.  After my release from the hospital, and before I left the country, I was able to do a good bit of touristy walking around like a regular person.  I can’t have a passing thought about that time without a goofy grin spreading over my face.

I returned home and had no problems with my immune system recovery.  I caught a tiny cold after two months and was over it in a week.  Other than that it was smooth sailing.

After six months, I had an MRI which has shown zero disease activity.  This means that I have no lesions on my brain which are currently doing any damage (I had four as of October 2012.)  I do have some scars from previous damage, but they are shockingly minimal (this is by the grace of God, as HSCT does not repair nerve damage.)

I began physical therapy and can now consistently walk for over a half mile before my left foot begins to drag, though I have recently been able to get back on the treadmill after twenty minutes leg rest and am able to complete a second round of over a half mile.  I recently was able to do 1.5 miles this way in one workout session.  While resting my legs, I do resistance training on my arms using weights and an arm pedal machine.

There are still days and weeks when I am very much aware that my body is not one hundred percent.  All the same, I would say that my EDSS number would likely be a very comfortable 2 today.  My bad days today look similar to my good days one year ago and that blows my mind.  My brain was locked on decline for so long that getting better has taken a whole lot of getting used to.

I intend to tack this post at the top of this blog so that it is the first post read.  I journaled daily while in Moscow and you can read through my archives to get details of that time and the treatment.  As I am still recovering, and will be for another 12 months, I am slow to respond to requests for information and hope that you can find that I have answered some of your questions in previous posts.  If your most burning question is, “Was it worth it?” then I can say with total confidence that it is completely worth it and I would do it all again in a heartbeat.  MS can be beat.  I’m glad I quit waiting for an engraved invitation to go and see what all the fuss was about.

The Update to Beat All Updates

19 Mar

On Thursday afternoon I laid down for my first MRI since returning from Russia. I have to be perfectly honest here and admit that my confidence wavered heavily and I worried that this MRI would reveal that the disease was still very much active. Even as my body has shown improvements, I still couldn’t shake the worry that I was having a nice placebo experience.
My fears were not calmed when the doctor’s nurse called me on Monday morning and said that I needed to come in. He had said he would call me with the results, why do I have to come in? You only get called in for bad news.
Sometimes though, your neurologist forgets that he said he would call and he has you come in so he can look at your results with you. And then, after exclaiming that the scan is remarkably clear, your neurologist might dig through your old files to make sure that you did used to have enhancing lesions. And then, he might even scratch his head and ask you to remind him what MS drugs you take. You might pretty much blow his mind when you remind him that you went to Moscow, Russia for a bone marrow transplant. Suddenly, he might become keenly interested to see all your reports and scans from Russia. This is how my Monday morning doctor’s visit went.
Officially, I have zero enhancing lesions. Zero. I have never had zero, even when taking all the prescribed MS treatments. This is a straight up miracle.
I begin physical therapy tomorrow. I feel pretty much over the chemo, though still a little foggy and nap prone. I am eager to see how much better I feel after adding regular exercise to my routine.
This has been no easy journey and I would not be any where near to where I am were it not for your prayers and financial support. While the financial support is so crucial, I do not want to downplay just how equally important the prayers have been. My healing to His glory. Thank you for being a part of this. I am enjoying today and excited to see where we all end up next. I love you all and I mean it as much as always.

Additional Tips and a Link

28 Feb

I’ve blogging (mostly) daily for the past four weeks at ericswife.com.  I so enjoyed our cyber time while I was in Russia and I’d be happy to see you over at my other cyber haunt.

(I will just keep adding tips to this post from here on out.  Feel free to leave questions on this post and I will answer them for everyone.)

14.  Don’t drink the tap water from anywhere in Russia except for in your isolation room where the water and air are very well filtered.  Buy water from the local store.

15.  Ladies, bring your own sanitary items from home.  You can get them in Russia, but you will find that most store visits include a game of charades.  Skip the game.

16.  Bring your own Tylenol  or whatever you prefer for mild to moderate pain relief.  They can provide some from the pharmacy there, but it is just as simple to bring something from home that you are more familiar with.

17.  What to wear: I was comfortable wearing cotton camisole undershirts, yoga pants, wool socks, and long sleeved t-shirts.  I had fantastic long underwear that I wore any time we left the hospital, though I don’t know if that matters as much for a spring stay.  I experienced a good deal of night sweats, so breathable should be your aim when packing.  During the 7-10 when you are in the thick of isolation and aseptic cleaning, you will be made to wear a regular change of hospital issued gowns.  Good news!  The back is sewed closed.  (I did not have a robe with me and likely would not have used one as the rooms are kept quite warm.)

18.  To be more precise:  My Crocs were one piece of material with no straps or fasteners.  Crocs are made out of rubber and are not very porous.  I am not promoting the brand, though they do provide a pretty perfect shoe for the aseptic process. I would assume you can find another brand that is non porous and is made of one continuous piece of material.   (click the link to see some similar to my pair.  Dr. Fedorenko wears purple Crocs.  Confidence.)

19.  The hospital does provide masks for you to use when you are discharged.  I brought my own from home and found that they were more comfortable than the hospital issued masks, though I don’t think bringing them with is a necessity.

20.  Taxi from airport to hotel/hospital cost is about or under 3,000 rubles ($100 USD.)  Taxi from hotel to hospital should be around 500 rubles ($18-$20 USD.)

21.  I ate the plane food.  On the plane I wore the mask, washed my hands, drank lots of water and generally paid attention to what I was touching with my hands.  Your bald head and face mask are like neon signs that beg people to stay away from you.  Use it.  😉

22.  No food restrictions upon my return home.

23.  We found that every where we went in Russia was almost kept too warm for my liking.  This included my hospital room.  There is no way to adjust the temperature  so I advise keeping cool with layers of clothing.

24.  (LOOK AWAY FELLOWS!!)  I used disposable pads during my period.  There was no discussion regarding a hospital preference, though I did read about some concerns of tampon use and toxic shock syndrome when used with a low immune system.  Could be wrong about it, so you may as well bring what you want and ask when the time comes.

25.  Deodorant is used very rarely by the Russians we met.  We both learned to embrace this piece of their culture.

26.  The hospital does have a laundry service, though this is not a routine thing for them.  I used them once for my own laundry and then just washed in the sink and hung in the bathroom after that.  Their service is fine, I just found it more convenient to do it myself.

A Slight Update and Tips for the Patient Traveler

28 Feb

I keep thinking that I will make an update as soon as something happens. The thing is, it doesn’t feel as though anything is happening. It is difficult to notice certain things. For instance, I did not go from walking downstairs with my white knuckles on the rail and my eyes glued to my feet to jogging lightly downstairs while talking on the phone and looking off to the distance over night. I do jog lightly down short flights of steps with nary a concern now, but I could not tell you when that started. Recovery really does sneak up on a person.
I know that there are a good number of patients who followed Phoebe and I while we were in Moscow, and are now planning their own trips in the coming weeks and months. I wanted to make a quick update with some tips Eric and I discovered along the way.
1. We initially purchased an internet card from a company called “Beeline.” The card worked fine, until I went into isolation and the signal grew weak. Eric switched it out for one from a company called “MegaFon” and the signal was much better. You can find kiosks for both at area malls and some hotel lobbies.
2. In isolation, I was allowed to keep my shoes because they were Croc brand shoes, made with only rubber and no complicated detailing. Because of their form, the nurse tech could wash them easily each day. Any other shoes would have been packed away.
3. I packed too many yoga pants, t-shirts, and socks. Because I was not doing much more than just laying around, my clothes were easily washed in the sink and hung to dry in the bathroom. If you don’t mind doing similar, you can easily get by packing quite light.
4. I was gifted with tea bags before I left and I am so happy I had them. The hospital provides a tea kettle in each room, but you only get so many tea bags a day. Having some from home kept me in tea bliss.
5. You will want to discuss with Dr.Fedorenko options for a taxi from the airport. Do not go with whoever is sitting around waiting. Dr. Fedorenko has a service that he likes and he will likely be able to help you arrange a pick up. We arranged our own pick up from the airport and found that a slight accent confusion landed us at the hotel “Bega” instead of the hotel “Vega.” There was a pretty huge difference between the two establishments. Find a Russian to help you make taxi plans.
6. The nurses speak literally no English, but their level of care is among the best of the best. Dr. Fedorenko will give you a list of symptoms and their translations. This list is gold.
7. I am terrified of new, weird, or otherwise odd looking/smelling food. It’s an issue that is easy to hide stateside, but I was really nervous about Russian food, Russian HOSPITAL food, no less. As it turned out, I was able to happily eat everything brought my way, with the exception of the cow’s tongue and borscht. I lost just a few kilos during treatment and gained them all back before discharge, so I am happy to say that the food was a pleasant surprise.
8. Learn how tall you are in centimeters and how much you weigh in kilos before you go. I was saved by a doctor with a smart phone, but I would have preferred to not show my poor math skill hand. Do better than I did. Make your math teacher proud.
9. Don’t shave your head until the hair starts to fall out. I had mine shaved 10 days before it fell out and ended up needing a second shave.
10. Get out and walk as much as you can. You are not in tourist-y Moscow. You are in blue collar Moscow and this is probably the best chance you will get to see the city for all its unvarnished charm. There are shops that line the streets by the hospital, as well as several restaurants.
11. There is a hole in the wall restaurant right beside the back entrance of the hospital. Try it out if you want stories to tell, but not if you are really hungry.
12. I do not know from personal experience, but a friend of mine strongly suggests you avoid the Russian vodka.
13. Above all, if you ordinarily get stressed out when you are not in control of scary situations, get over that before the plane lands. Your body will be in a constant state of stressed out until you give up the reigns. You are in very good, kind, and compassionate hands. Please give them all my love and deepest gratitude.