6 Month Review in Chicago

This past week I visited Dr’s Burt and Balabonov in Chicago for my 6 month checkup.  My transplant was 5/21 of this year.  My trip was worthwhile. I met Burt in the AM and in his straight to the point, researcher type communication style said he was sorry he hasn’t helped me.  My walking and coordination is worse than pretransplant.  He said most of his RRMS patients are showing good progress at 6 months.  He and I discussed before treatment in April that in his opinion I was transitioning into progressive disease and successful outcomes are not as common.  He told me he does not recommend further immunosuppression at this time and believes my MS is "no longer active" meaning it is now neurodegenerative and beyond the reach of any approved MS medication designed to mitigate progression.

We got into a debate regarding the use of Solumedrol (IV steroids) after rATG during the conditioning phase of HSCT. He questioned why I refused steroids during chemo and told me he will no longer allow patients to refuse solumedrol. I pushed back and reminded him I took several "rounds" of solumedrol during the conditioning phase but after 5-6 days of ceaseless hiccups I was tired and wanted a break. He informed me the 2 identified reasons for treatment failure are SPMS and fever after rATG. I had both and while solumedrol did reduce the fever I obviously shouldn't have been the one to make the decision regarding treatment options particularly in the fog of chemo I was in. I knew from steroids over the years they usually cause me hiccups so among the gallons of liquids pouring in to my body I was confident that was the culprit.

He told me hjs study results from the phase III MIST are very good and he will publish soon. Burt works with a Neurologist from Rush University for all of his HSCT patients. I saw him in the afternoon and he was more positive. He told me I shouldn't expect improvement for a while longer and that they usually occur between 1-3 yrs post treatment. I had met Dr. Balabanov before treatment and he was not nearly as emotive as he was this visit. I got the feeling Burt talked to him between visits and asked him to be more positive than he was although that could just be my NY cynical conspiracist predisposition... Burt actually came out into the waiting room (I was waiting to go back in to complete the memory tests and the famous "pick up the pegs, drop them on the desk and floor and pick them up to put them in the hole test)... to make sure I went to see Balabanov that day.

Either way I left Balabonov feeling better than when I went in and at least I have "hope" for several more months. Above all I'm not sorry I did HSCT, still committed to live each day to the best of my ability and will continue to pursue all reasonable options to seek relief.

Before I traveled to Chicago I completed follow up MRIs for comparison to pretransplant MRIs.  My brain showed one new lesion (6 total) and my C-spine scan showed increased signal intensity.  The challenge here is to determine if this progression occurred during the 6 months between the last MRIs (11/11) and the HSCT (5/12).  There is a good chance the progression occurred before transplant and my symptoms are a result of the lesion and signal increase pre HSCT. 

Nothing else to report for now.  Work is good, home life is good and after the incomprehensible events in Connecticut Friday I am ever thankful I woke up today with our two happy, healthy kids in their beds snug as bugs in rugs!  Thank you God!

Day + who's counting anymore!

I'm just past the 4 month mark post HSCT. I feel progress in different ways. I have more days of decent typing dexterity, straighter walking and the all important and scientific study measuring how much of the bottom of my feet I can reach with my sponge in the shower... I bet you're all a bit surprised I'm capable of scientific experiments and about twice as surprised I use an exfoliator in the shower...Both are true.

Most days it's impossible to hide that something is amiss with my walking but I think I'm handling it better. Stairs continue to baffle me and there's no disguising I need to take them slow. If there's more than 2-3 I need a railing to get down safely. I have recently discovered peace in using a cane in public not only physically to support the inevitable missteps but psychologically to obviate my innate instinct to try with all my might to appear that I'm not defective. When I use a cane it's out there for all to see. I get a lot of stares and an occasional question about why I'm using a cane like yesterday at my son's game a parent asked me "did you get hurt or something?" with the emphasis on something. I gave the usual retort, some days my legs don't work so good.

The big question is whether the HSCT has improved my disease from pretransplant condition. The answer is, the jury's still out. I know I'm worse than I was in October 2011 but that was after I stopped Tysabri and I had further progression before HSCT in May. Last year at this time we were waiting to move into our house and we lived in a 2nd floor apartment. There were 20 steps to get up and down and I could get down without the railing consistently. I have an appointment in November with my Neurologist at which time I will go for a brain and C-spine MRI. The results will show if any additional lesions have appeared in the past year.

The most important aspect of my recovery is how close I am to stressful situations. It is amazing how even the slightest stress will immediately impact my ambulation, leading to more stress, leading to more physical problems...

That's all for now. I will update again after my MRI's in November.

Day +73

During the research, application and…waiting… stages for my HSCT treatment I read several blogs from people who went through the procedure. I followed them closely absorbing every morsel of technical knowledge while attempting to grasp the emotional nuances of going through this difficult process. There’s a consistent theme in most of these blogs that upon arrival back to their respective homes such as California, Texas, Oregon, Australia and many parts of Europe, the postings drop off precipitously and without warning.

I believed that when HSCT’ers arrived home they would begin to feel better and have more time to bloviate about their myelin, their recovery and any other inane topics they determine to be their zeitgeist. This doesn’t usually happen and blog after blog you see days turn into weeks and months between postings leaving us hanging on the edge of our seats to decide for ourselves whether their respective adventures were worth the effort! I promised myself that when I returned from Chicago I would continue to write with dedication and consistency to my tens of followers to keep them abreast on my strong recovery and recuperation.

Alas, on day approximately +73 since my transplant I have posted only a few times since my arrival home and not once in the past 6 weeks. Strange even to myself but true. So you ask, why have I been dragging my feet leaving everyone hanging without the proper ending a story like this should have??? Well, probably because I have been dragging my feet…literally.

The affects of chemotherapy have all but disappeared from my body. Occasionally I’m overcome with waves of nausea but I think that’s usually from my lack of attention to those all too important four words: “best if used by ” in the refrigerator… After all, how can sour cream go bad??? Badaboom! Seedlings of fuzzy hair are now visible on my still shiny head, my lab draws are pretty normal including my WBC count which hovers around 3.5-3.8 (4-10 is normal range) and those crazy chemo induced dreams are now replaced by good old fashioned nightmares about work!! Work you say?? Yes indeedy, on July 16^th I returned to the office full time to prepare for the all-important Open Enrollment season later this year blah, blah, blah. I truly can’t believe it went by so fast. I believe it more today as I opened my pay check to see they began deducting for some of the hours I was out. CEOs just don’t get away with half the stuff we used to. Damn you Enron and Tyco! I was out a total of 52 work days and while I worked for most of that time from home there was still plenty of time for rest and recovery and I'm grateful to my employer for granting me this leave of absence.

I think the best explanation for the elongated delay between postings was my eternal hope that tomorrow, or the day after the BIG breakthrough would happen and I would post a video of me sprinting through the streets. My friend Chad an HSCT’er from Oregon posted not long ago that he was able to “run down the street” after his daughter. Those aren’t just words to me, that thought slowly oozes through my mind like poured gravy on mashed potatos (make your own joke here). Another blogger Andrew from Australia recently posted a video on our FB group for fellow HSCT’ers showing him running in a park for the first time in years. His clumsy strides one after another running no more than 20-30 yards in all was emotional to watch. Over and over I watched him go, seeing me in his shoes, understanding how demyelination affects muscles and therefore ligaments and tendons as a result of decreased structural support.

That day for me is not today. It may be tomorrow or next week. Today, while grateful for what I can do, I still yearn for what I could do before, and in truth what others can do that I cannot. I have always yearned for that which hangs beyond my reach. On one of Kurt Vonnegut’s birthdays late in his life someone asked him if there was anything good about getting old and I’m paraphrasing, he said it’s great to be able to walk down the street and not want to bed every attractive woman I see. This is obviously not metaphor for me because I'm a happily married man.  However, with other non-women related topics there are some similarities that with age I'm more accepting and grateful for  what I have. Mr. Grace, Mr. Vonnegut was a friend of mine… You are no Kurt Vonnegut…

Anyway, enough nonsense and back to the matter at hand for the 2-3 people still reading this diatribe. My walking is as clumsy as ever. I still use the cane occasionally but the support I receive having an extra “leg” to lean on is often overshadowed by my inability to relate to my surroundings or more precisely the people who inevitably stare at an otherwise normal looking dude with no leg cast or brace to justify the walking stick. I feel very uncomfortable drawing attention to myself and while the pretend therapist in my mind (Looks more like Dr. Melfi from the Sopranos than Dr. Weston from In Treatment) tells me constantly to block out everyone else and focus on myself, I can’t avoid the stares and I frequently stare back with less than friendly thoughts going through my mind (many of which include using my cane for less than friendly purposes)

So there you have it. What’s new with me?? I can walk today. It is painful to do and watch but I get my ass out of bed, into the shower and to work to support my family as I will do for the next 25-30 years, yikeees! For this I’m thankful to the good Lord above. Some days are better than others. Nights are usually better as my symptoms are less pronounced. Two weeks ago Tuesday there were a few hours in the evening I felt great and my walking was effortless and without pain. An increasing number of people ask me what’s wrong with me and why I am limping? I was at a meeting earlier this week with a high powered shaker and mover in the insurance industry. I was pitching him to start selling our insurance services through his agents and brokers. He was perplexed by my bald head as it didn’t fit my body especially with the peach like fuzz beginning to surface. When he walked me out he was further baffled as to why I walk at half the pace as a normal New Yorker. As we shook hands at the door, it was clear I didn’t make that sale, yet.

What will happen tomorrow??? Anyone’s guess. It is strange for me to be on this side of the procedure because at this point there’s nothing left to do but wait, take good care of myself and ask God to give me the strength to execute his plan for me to the best of my ability. When MS progressed last year this time I had more hope. Gilenya, the new medication I began in October would be great for me! I would see HUGE improvement, but I didn’t. Then I found HSCT and this would surely “stem the tide” on this dastardly manipulation of the immune system, but it hasn’t, not yet. It’s a strange emptiness not having the next best thing to look forward to. This has not been lost on my wife who rides these waves with me. She’s in PR for a month to visit with her family and for a well-deserved break from me (not necessarily in that order).  She comes back in a few weeks, I hope…

Most of my family and friends have fallen off of my blog so those that do read this post are probably either contemplating HSCT for themselves or have a family member affected by MS and are considering this treatment. Heed my words, this is not an easy procedure physically, emotionally or financially. I read many postings on FB from those that are on the front side of this procedure and they would give their right arm to be accepted into one of the increasing number of facilities around the world performing HSCT for MS and other autoimmune diseases. They have hope and sometimes hope skews reality. Scientific studies and data show that this doesn’t work for everyone and particularly for those who have had their particular flavor of autoimmune disease for several years, like me. This IS the answer for some of us, it greatly improves our condition in most of us but it’s not without a serious toll on our lives for a long time. It’s too early to tell what the final result of this treatment will be for me but I see more and more people grasping on to this as THE answer.

That’s all for now. As an optimist by nature it’s difficult to write a less than positive report but the purpose of sharing this experience was to never sugar coat this process in any way. I still do believe I will run again one day, maybe tomorrow...

Day + 29

Just a quick note to give an update on recovery.  I have spoken to many MS'ers in the past couple of weeks who have received HSCT and have provided great support for what undoubtedly will be a longer than expected recovery. 

On the positive side, the affects of the chemo on my bladder have subsided and this week for the first time in 2 months I slept the whole night without a pee run :)))  Also my energy is almost back to pretransplant levels.  Bea and I are up early each day and I put in a good day's work from home.  Most days I'm down to one afternoon siesta for an hour or so which in truth most of us could use each day even without a stem cell transplant! 

On the less positive side my walking is at a level worse than it was before the transplant.  Most days I'm using a cane to get around or a shopping cart if I'm shopping.  It's amazing how much easier it is to get around using a shopping cart.  People can't even tell I walk with a limp.  It gets a little uncomfortable when Bea piles the cases of water on top of me as I'm sitting in the cart at Whole Foods but I deal with it...

I have lost so much muscle in my legs that coordination and mobility in addition to the spasticity has made walking painful and just plain ugly.  Arm and hand strength seem worse than before as well.  Lastly, the L'hermitte's continues down my right leg particularly in the mornings.  It's not as scary as when it first began a few weeks ago as I can kind of predict when it will hit.  It still throws me off balance and I gasp with each bolt of lightning down my leg but it's more manageable. 

I'm dealing with the slow recovery as best I can.  Honestly I thought by now I would be ready to go back to work and moving a lot better  not worse than I was before Chicago.  Walking out to the field to my son's soccer practice today was a real challenge.  It was only a few hundred yards but my body completely locks up making for a walking like motion similar to something out of a Frankenstein movie dragging my left leg along.  After practice on the way back to the car Jose Miguel was kicking the ball down the field than running to it.  It rolled in front of me and I clumsily kicked at it with my right foot.  He said it looked like I had never kicked a ball in my life.  There are moments that are incredibly maddening and make me want to scream but it doesn't change anything.  I played soccer for 10 years and my son meant no disrespect...  He was right.  

MANY people I respect very much have told me it is not uncommon to experience a worsening of MS symptoms for 3 months or so.  No matter how many times I tell myself this will hopefully be temporary it's still frustrating to have gone through this procedure only to be in my current condition.  I'm still confident this was the right decision and I'm hopeful improvement begins soon. 

Tomorrow I will buy the Nintendo Wii Fit as I understand this can help to build stability and strength.  Also I will begin working out in our pool now that the temperature of the water has finally made it north of 70 degrees :))

Although my body is weak my resolve to fight with all the inner strength I have is not broken.  I thank all of you who continue to pray and think of me. 

Day + 18

The past few days have been interesting as the early strength and symptom improvement I experienced upon my return to NY has been followed by a few days where I feel like I did mid week last before my discharge from the hospital. 

On Monday and Tuesday of this week I received 1G of IV Solumedrol each day to attempt to "cool" the L'hermitte's I was experiencing last weekend.  This was very effective and today is the second day without any symptoms.  The steroids created huge fluctuations in my blood counts which have made me extremely tired and weak.  For the past two nights I  have had ridiculous night sweats and my bladder is waking me every 2 hours like clock work.  These same symptoms dominated most of my inpatient admission so I can assume my WBC is back down to a low level as it was while inpatient.  One big positive difference is I have not had fever like last week so I'm able to walk around the house. 

I'm resting all day today and this weekend.  The truth is it's not hard to do as my energy is very low and my legs are very weak and stiff.  I have lost so much muscle through this process.  The weather is perfect and although I wish I were on the golf course or tennis court, resting in our yard with a cool breeze is not terrible.

Although I looked forward to a significant reduction in medications post transplant, this is not the case.  For the next 12 months I need to take Acyclovir, Fluconazole and Bactrim because of my suppressed immunity in addition to the Baclofen, Pristiq, Detrol and Ampyra which treat symptoms of the MS.  I think that's more pills than my 75 year old mother!  The combination of all of these medications has me in a somewhat foggy state and a bad taste in my mouth always but I'm hopeful these will subside in the near future. 

Great weekend to all!!  NY will be sunny and warm :))  I need to get a little color on this body and head to stop scaring the neighborhood kids!

Day + 16

Good things come to those who wait.  The events from over the weekend causing bothersome L'hermitte's symptoms have subsided significantly.  My Neurologist in NY fit me in for an appointment on Monday afternoon and recommended 2 days of high dose steroids 1 gram of Solumedrol to cool me down.  After confirming with Dr. Burt this was ok I received the steroids Monday and Tuesday.  This round affected me more than usual assumably because of my suppressed immunity.  The major symptoms of high dose steroids to me are agitation, insomnity and hiccups but they worked and today I have had a lot less attacks than the last 5 days!!!

After the infusion yesterday I went for the weekly lab draws for Chicago.  I received a call today from one of Dr. Burt's nurses informing me Dr. Burt reviewed some of the results and my white blood count is 36!!!  This is the same WBC count that for 10 days recently was <0.1  The normal maximum level for WBC is 13.  She informed me this is probably because of the high dose steroids and it will  normalize shortly.  She advised it will probably increase my fatigue and she is correct.  Bea and I still did some running around today but I am more tired than the last few days.

Today I broke down and went for the handicapped parking permit.  I have resisted this for the last couple of years but reading posts from fellow MS'ers recently convinced me that this was nothing to be ashamed of.  There was one post from someone who wrote "I'll give you my parking permit but you have to take my MS with it"  I think that was the turning point for me.  Bea and I got the paperwork together and the doctor's note and it was processed within 10 minutes :))  I can't wait for my first opportunity to race some 90 year old lady to the last handicapped spot at the mall!!  Haha!  In truth I will use it sparingly on days that I feel I need it (anyone buying that??) 

As of 4:00 today our pool is officially open.  It's a cool 72 degrees but it's blue and mostly clear!  We ordered a solar pool cover which will be installed next week.  Our pool has great sun exposure all day so I think it will be very effective. 

It's actually nice not to have much to report.  I'm settling into a good routine of working from home, getting some errands done and I will force myself to rest a good part of the day as well. 

I have received some interesting messages recently from blog readers with great questions.  This is why I wrote this so please keep them coming.

Day + 13

Well that didn't long!  Back by popular demand from an early blogging retirement I will give you an update quicker than anticipated.  Actually, there was no demand, at all, but there is an update that I will share with you.

Earlier in the week while in Chicago (or last week) depending if you consider Sunday the last or first day of the week (I'm still on the fence), I began experiencing a condition called L'hermitte's Sign which is defined as:  Sudden transient electric-like shocks extending down the spine triggered by flexing the head forward. Due to a disorder such as compression of the cervical spine (the portion of the spinal cord within the neck).

The sign is named for a French neurologist, Jean Lhermitte (1877-1959) who originally described it in a patient with multiple sclerosis (MS). It is a classic sign of MS.

I can recall many years ago experiencing this for the first time.  It was before my diagnosis and I had no idea what to think of these strange, painful sensations shooting down my arms and legs.  I remember experiencing these most while driving and I was convinced there was a loose wire somewhere in my seat that was shocking me.  This feeling is exactly like touching a live wire.

I have had Lhermitte's on and off since my diagnosis but in recent years the condition had lessened in its severity and frequency.  During treatment in Chicago I felt it on a day I wasn't feeling great.  I informed Dr. Burt and he responded Lhermitte's was not something he's seen related to HSCT. 

This past Friday I had a few episodes in my right leg but by yesterday morning I was experiencing frequent, painful bursts of electricity down my right side through to my right foot.  I was standing in the kitchen yesterday morning when an episode occurred so powerful I spilled my cup of coffee on the floor.  Not only is it painful but it disrupts my equilibrium requiring me to reach for something to maintain my balance.  I began to get vey anxious as this was the last thing I had expected and fears of a new and active MS lesion is my worst nightmare, particularly so soon.  I emailed Dr. Burt and of course within 10 minutes he responded reiterating he has not seen this as a result of HSCT.  He did ask me what medications I had stopped taking since treatment. 

Last fall when I had found a Neurologist accepting my new health plan he prescribed for me a Selective Serotonin Reuptake Inhibitor (SSRI) or crazy pill as I call it.  He said his MS patients react well to antidepressants reducing pain and also assisting with depression which is part of MS.  I had never taken medicine for depression and was hesitant but truth be told it was a difficult period.  My health was spiraling down, we had no house, we were living in a hotel, we had to change our son to a second new school since arriving to NY because we had to leave our apartment and in short, I was depressed.  He prescribed Cymbalta and I rationalized it to say it would relieve the pain associate with MS...  A few weeks later I manned up and took the mild dose on a Monday morning and went off to work.  These are "time release" capsules.  I remember around 12:30 in the afternoon I was in a meeting with my sales management and, it released.  I felt immediate anxiety at a very high level.  Some of these medications make your symptoms worse for a period before improvement is seen, this apparently was one of them.  I was one and done with Cymbalta and felt the effects for a few days after.  A month or so later I tried another flavor of SSRI because I still had "pain".  I tried Pristiq at a very low level and my body tolerated it well and after a few weeks of slightly elevated anxiety I felt better.  Of course by this time our lives had settled considerably domestically as we were in our home, the kids were happy in school and as the saying goes "happy wife, happy life".    I didn't see a huge benefit from the Pristiq and looked forward to stopping after HSCT when I had time away from work to absorb the side effects of coming off an SSRI.  During my hospital stay I was taking so many pills in addition to IV treatment I just started skipping days of Pristiq.  So Dr. Burt, I stopped taking Pristiq.

Mom and Dad were packing up yesterday morning and sadly my goodbye and thank you was brief and not nearly sufficient for how much they helped over the past several weeks as I headed upstairs to rest in bed hoping this would stop.  I rested for a few hours and the episodes reduced in frequency. 

Matthew had a soccer game in the afternoon so off we went.  It was great to be outside in the sunshine.  I took my cane to assist when the episodes hit my leg which were not infrequent.  Matt's team won 4-2 and coincidentally one of my cousin Tom's sons was refereeing Matt's game and the other son was playing on the adjacent field.  It was nice to spend time with him and my aunt and uncle who came to watch Conner's game. 

I slept very well last night as my routine is normalizing and my body is clearing from toxicity.  This morning I awoke and carefully walked around and downstairs trying to avoid leg problems.  Within an hour the L'hermitte's attacked hard and fast.  What is normally predictable based on the movement of my neck and the consequential strain on my spinal cord was now random, frequent and painful not to mention scary.  I was having them every 5 minutes or so. 

This entire post is pretty negative BUT in the spirit of maintaining some positive note to each update here it is.  Because I knew it was L'hermitte's I looked it up on the Internet to learn more.  Within the first paragraph it says this can be caused from MS (we knew that) but it also could occur during or after chemotherapy or upon sudden discontinuation of SSRI!!

This obviously elated me as two of the potential causes for this were recent, identifiable and not a probable new MS lesion or exacerbation!!  The only better news I could have read would be that these are guaranteed to stop within a short period followed by several years of increased sexual performance!  Sadly they were both missing. 

Dr. Burt sent me an email today to see how I was feeling.  I responded that the episodes are more severe and frequent in the morning but less in the afternoon.  I told him what I read on Wikipedia regarding the correlation of chemotherapy, SSRI sudden discontinuation and L'hermitte's.  Based on all I have described about Dr. Burt to you thus far,  how do you think he would respond to me self diagnosing based on Wikipedia???  Yep, you guessed it, Poppycock!  He actually told me earlier in the week about the SSRI discontination potential but completely discounted the potential correlation with chemotherapy.  He said he's well aware of the correlation between the two but not with the chemo drugs he uses for autoimmune disease... Ok, I'm in no position to question the wizard. 

He asked me to page him.  When we spoke he told me he has never seen this before and he thinks it could be the SSRI issue.  He told me he did research today whether L'hermitte's could be "some sort of weird pathway to PML based on my Tysabri, Gilenya history".  Those of us in the MS world cringe when we hear any mention of Progressive Multifocal Leukoencephalopathy (PML) from a physician.  This is a rare and progressive neurological disease.  I know what you're thinking, don't you already have a rare and progressive neurological disease??  Yes I do but this one is MS on steroids.  PML is fatal in about 50% of cases and causes rapid, severe and permanent disability in the unlucky half.  The good news is he didn't find any connection between the two.  I asked him if I should get an MRI and he didn't recommend it at this time but to keep him posted.  Again, kudos to his amazing dedication to his patients reaching out to me on a Sunday, researching the issue and then initiating a phone call?  Unheard of. 

While I didn't anticipate posting so soon after announcing my slow down, I managed quite the recap of just two days.  In truth I wasn't planning to slow down the posts so quickly I was just a little annoyed because my readership was dropping like a rock in China (I receive stats of readership by country daily) and I was getting frustrated (joke).

Day + 11

Today was a great day!  What a wonderful treat to wake up to bright sunshine, beautiful green trees and most important doing it in my own house.  The night wasn't great for sleep.  I think it will take a little time to rid my body of all the drugs but coming downstairs around 6:00 to my own coffee, my own newspaper and morning TV shows was priceless. 

My day today was dominated by overwhelming fatigue.  I can't believe how powerful the effects of HSCT have been on my body.  In a day that did not have any other pain or major symptom, the fatigue was unrelenting.  A trip up the stairs required rest! 

It was very nice to sit outside and feel the breeze and just rest and share with Mom and Dad before they head home to SC tomorrow.  I spoke with Kim from Dr. Burt's office who called just to check in to see how I was feeling and confirm I had the plan set for weekly lab draws and my medications.  Their care and commitment is so appreciated. 

Bea and I got a lot done around the house.  Lot's of appointments for next week: Pool, lawn, roof, AC, garage door.  Next week will be a busy week.  I also got a lot more work done than I have in over a week. 

Despite the fatigue I did notice a couple of cool things.  On a weekly basis I have to sign about 150-200 checks for work.  This task had become increasingly difficult in recent months as the numbness in my right hand was not only making it difficult to turn the stack of checks one at a time but the fatigue in my hand made holding the pen difficult.  Today I could actually feel the edge of each paper with my finger to flip the checks one by one!  The fatigue from signing was about the same. Also, coming down the stairs in my house I actually felt my left leg bend a little bit!  It wasn't completely locked up with spasticity requiring unnatural gyrations in my back to find the next step.  It was slight and the fatigue was so strong I was moving very slow but it was there. 

Unfortunately the next week will be cool and cloudy so I'll need to wait to tan my cue ball.  Tomorrow the big item on the agenda will be Matthew's soccer game and a lot of rest. 

My future posts will be limited to days with significant updates to report.  I hope this journal serves to help at least one other MS patient considering this aggressive procedure to stop their MS.  I have enjoyed writing this as it has brought feedback from many I love and it was those messages from you that helped me get through the difficult days. 

If anyone has any questions regarding HSCT for MS please do not hesitate to contact me.  The best way to reach me is kevmgrace@aol.com 

Thank you again for all of your support!

Day + 10

I'M HOME!!!

Nothing like home sweet home.  My numbers climbed again overnight and this morning I was discharged.  I feel so much better than yesterday.  Last night they stopped the IV antibiotics so I was not connected to the IV pole.  I slept very well.  The nurses came in early today very happy to report the nightly labs came back very strong and were very confident I would be out early today. 

Dr. Burt came in around 9:00 to say I was free to go, shook my hand and wished me well.  I thanked him on behalf of Bea and I and he left.  I never found a way to connect with him but I don't think if my admission were 100 days that would have changed.  He's a brilliant scientist with a passion for his work to help people beat their diseases.  He practices a different kind of medicine than most of us are used to.  He doesn't bill by the visit or procedure.  He thinks globally and it's fascinating to watch.  He lives on studies and outcomes and then does what he has proven will work to help as many people possible with a growing number of autoimmune diseases.  He works 24-7 and I'm grateful for all that he does.

Bea did the Amazing Race journey today taking the 6:00 AM flight to Chicago to meet me at the hospital for discharge around 10:00.  She packed my bags, made sure she had all of the discharge paperwork and out the door we flew.  We raced back to the airport to try to catch the 12:45 to Baltimore then on to Islip.  Our original flight wasn't until 6:50 PM arriving at 10:00 this evening.  We were met with the grim news that the 12:45 was overbooked by an amount so high they wouldn't recommend putting our names on the stand by list Grrrrr.  I wasn't afraid to use the "can't you see I've had a rough week" trick with the hospital mask, cue ball head and the best worst post chemo face I could muster, it wasn't hard.  Even though she gave us the bad news she kept typing away.  Whenever they keep typing you always have that glimmer of hope.  Although, too often a seat change request for me results in 18 minutes of typing only to result in the same 37E I walked in with...

So I was in fact getting tired and it didn't appear we were getting anywhere.  She printed the boarding passes for the 6:50 and the stand by passes for the earlier flight.  I thanked her for all of her time.  We began the wheeled journey to the gate which bypasses the security line :)).  We realized we didn't check our luggage so we were about to lose a few of our personal liquids.  I had my favorite 7 oz L'occitaine hand cream but it was only half full.  He wasn't buying my logic so down it went.  We arrived at the gate to check in for stand by and suddenly a camera crew arrived to video the ticket agent and a Supervisor on scene.  Bea was handing the agent the paperwork and suddenly she was in the middle of a shoot.  I couldn't follow much as I was again trying to impress upon them the need for me to arrive home by letting my head fall back and to the side in my wheelchair with my eyes barely more than half open.  Amazingly, within 2 minutes of furious typing 2 tickets popped up to Baltimore and then on to NY!!! 

As they were dumping me by the gate the producer chased down Bea to sign a disclosure form to use the footage for the show "On the Fly" on TLC which apparently is a reality show about the trials and tribulations of flying Southwest.  After Bea agreed he came to me because I was in the background of my wife's scene...  I respectfully declined. 

Our flights were fine.  Despite very full flights Bea and I managed to keep the extra seat in our row empty.  I wonder why??

It was really great to arrive home.  Mom and Dad were cooking chicken parmigiana for Jose Miguel and we had a nice meal.  I'm really grateful to have ended this part of the process and soooooo looking forward to my bed.  Good night! 

Day + 9

My numbers are climbing almost as fast as subscribers to the Facebook class action law suit!!

As of this morning my white blood count finally broke the <0.1 and came in at 0.3.  A few hours later they drew another sample and my wbc count increased to 1.3.  The minimum range is 3.5-10.5 but I'm no longer neutripenic.   My absolute neutrophil count increased to 0.1 from too low too count so the composite report impressed Dr. Burt enough to give me those magic words... I'M GOING HOME TOMORROW!!!

I'm sitting in my chair listening to the Mets through the Internet and waiting for dinner in my room.  I'm feeling much better from a tough first half of the day.  For my last full day in Prentice I really thought it would be easier but it wasn't.  The combination of the engrafting process itself and the medication used to stimulate it has caused great pain and discomfort.  The main symptom is throbbing deep bone pain as a result of the Neupogen medication working within my bone marrow to increase stem cell production and distribution of appropriate cell lineages into the blood stream.  The pain is worse in the pelvic and chest areas, and of course, fever.  Secondary to that is profuse sweating all day and particularly during the few times I was able to nod off for a nap when the flood gates would open.  Lastly, I have suffered an MS symptom all day called L'hermitte's Syndrome which are sharp electrical pulses usually down one or both legs that occur with the stretching of the spinal column.  These occurred down my right leg.  I spoke with Dr. Burt regarding these and he thought it was just a result of the extreme stress put on my body culminated with the 5 days of Neupogen injections.   I certainly hope so because leaving the hospital with a new MS symptom was not the idea. 

I have committed to not judge success/failure of this procedure on one day or week or symptom. This treatment was a long process and so is the recovery. To be honest I spent the first week of treatment doubting myself for choosing the nonmyeloablative protocol as opposed to the myeloablative based on my 10 year diagnosis but this thought process is not helpful.  I did appropriate research, prayer and made the best informed decision considering multiple variables.  Dr. Burt is the best at what he does for MS and many other diseases in the world and in the end this process in many ways was as much as I could handle. The rest is out of my hands but to care for and respect my body appropriately.

My responsibility also now moves to those before me who tirelessly "pay it forward" and this I will do with zeal. I anticipate significant pushback from the political part of the business of MS so I need to be wise, but the message must be heard.

Bea will be returning to Chicago on the early flight from NY to help me move out (funny after 16 days it feels like a move.  It shouldn't take more than 3-4 men and a good sized truck!)  She went home on Monday as Jose Miguel just needed some Mommy time and in truth we weren't optimistic we would make our projected 5/31 discharge with the problems I was having with all the fevers.  As expected, Jose Miguel was thrilled and it was a good move for Bea too.  She needed our bed, house, son etc. to reconnect for a break during this crazy ride that began for us in earnest April 18th. 

I have also decided to not rush back to work too quickly. I will look into my disability policies to see if I can take at least 2-3 months from home. I feel my body needs proper time and space to begin repair.  By this afternoon I felt strong enough to offer to attempt the trip to NY on my own tomorrow but Bea insisted on returning to pick me up.  It will be a lot easier for me as  and I will enjoy having Bea with me.  AND I'm exhausted.  We will arrive in Islip by 10:00 tomorrow evening. 

I'm hoping for a restful night after a busy day.  I feel I will sweat through the night but if the fever stays away I should sleep well. 

Just a special thanks to all of you who have reached out to me privately with emails, texts and calls.  These messages helped me through some difficult moments and you contributed to the success of this treatment more than you know.  

Also a special prayer for a family member who recently made a very difficult decision to improve her own health.  She has been reading my blog and I want you to know, I and so many others love you and are praying for your speedy recovery. 

Day + 8

On a day that I hope won't be repeated any time soon due to high fever, headache yada yada yada I want to share a happy story that is the reason for me being in Chicago today, and why I believe this procedure will work for me long term.

In the past year as my disease was progressing too fast to manage physically and emotionally, like many in times of need, I turned to God to ask for his strength, courage and assistance to find a way to stabilize my disease and grant me the opportunity to continue to provide for my family as a productive member of society.  There was no doubt that without a significant change in treatment, the "medication of the month" treatment plan I was on had me wheelchair bound too soon to fathom. 

In the past few years I had lost my way from mass as a routine part of my life.  There was no specific reason. I was living in Puerto Rico for 7 years and I didn't prioritize mass as I had while living in NY.  As my health was deteriorating in 2011, I found more time for mass, to pray, meditate and ask for support through this trying period.  I was aggressively searching for MS treatment options and in early Autumn I found HSCT for the treatment of MS through research on the Internet.  I recall finding some YouTube videos of patients and physicians discussing the procedure and literally bawling in my bed as I watched and listened to people who were confined to a wheelchair due to progressive MS, until HSCT changed their lives.

In addition to finding more time for traditional prayer I was praying to my Grandma who passed in 1998.  We were very close as she lived in our house since I was a child.  She was a strong Irish woman all 4 feet 10 inches of her.  She was born in Brooklyn, NY and was diagnosed with Polio at the age of 4.  She was quarantined from the rest of her family for 3 months and the family physician didn't think she would survive the disease.  Veronica Horan Attara not only survived, she married, had 2 daughters, a career with the old Abraham and Straus department stores, enjoyed a long and happy retirement and passed away at 88 years old.  I have vivid memories of childhood racing home from the school bus to see if I could arrive to my Grandma's apartment in our house by 3:33 as displayed on one of those early digital clocks where the numbers flip up and down as time changes.  It was just a game between us.  Since she passed, every time I see 3:33 I say a short prayer to my Grandma. 

My wife and I were married on April 10, 2010 in San Juan, Puerto Rico.  The mass was scheduled at 3:00 in the afternoon.  It was a wonderful church mass and a beautiful reception with friends and family followed. Most of my family knew of my close connection with my Grandma and 3:33 so many were wondering how or if Vera would make her presence felt.  Later in the evening I found on my Blackberry 3 draft messages created at exactly 3:33 PM.  To do this manually you have to hit the control button on the Blackberry 12 times in a row to create 3 drafts.  I tried it several times and it's really not easy to do, especially when you're not touching it.  The Blackberry was in the chest pocket of my tuxedo jacket and you can see on the video of the mass that at 3:33 I was motionless (scared s%$#) waiting for my beautiful bride to walk down the aisle.  It didn't surprise me as I feel her continued presence in my life.

In November of 2011 my pursuit of HSCT was fast and furious.  I was in conversations with University of Heidelberg in Germany, Northwestern University Hospital in Chicago and a facility in Manital India.  All of these facilities require voluminous documentation of disease progression through chronological MRI films and reports.  My first choice for many reasons was Chicago but I had been rejected from the MIST Clinical Trial because I did not meet criteria.  Dr. Burt insists on clinical evidence that the MS is still in the inflammatory stage for reasons previously noted.  I had sent him several MRIs which did not demonstrate any active or enhancing lesions in the previous 2 years.  This does not mean my disease wasn't inflammatory, it only indicates that during the time of my annual MRI evaluations, many lesions appeared but none were enhancing. 

My Neurologist in NY ordered another study in November.  It's not normal to repeat studies so closely but I was having additional symptoms so I didn't argue.  After I came out of the machine I felt a strange sensation but didn't think anything of it.  Our lives at that time were so hectic I wasn't great at deciphering my feelings.  I had recently moved my wife and son from Puerto Rico and the house we purchased in NY fell through so we were living in a hotel with our possessions in 3 different storage facilities, we had no house and smiles were short. 

A week later I received the results from the MRI Center and for the first time in several years my MRI included a Gadolinium enhancing lesion in my brain!  This is obviously bad news because it demonstrates my disease is progressing, but it was GREAT news because Dr. Burt would see my disease was still inflammatory and I would qualify for his treatment.  It was an emotional moment for my wife and I and I explained to her how I felt a strange sensation coming out of the MRI machine a week before.  I immediately thought of my Grandma and was so thankful for these blessings.  I was a little suspicious so I looked into the envelope for the CD.  Sure enough, this study was printed on CD number 333. 

Thanks Grandma, I love you.

Day + 7

Last night Bea left early as the long night before and into yesterday took a lot out of both of us.  I was exhausted so by 8:00 I was lights out.  It feels strange going to bed before the sun was down but I got over it quickly.  While most of the day yesterday I battled fever and headache, by last evening I felt good.  I was quick to sleep and slept well until about 1:30.  I awoke for some vitals checks and then I just did a little reading.  I was in a painless, feverless bliss so even though I wasn't sleeping I was a happy man! 

Around 2:00 AM I realized I would need some assistance to help me turn out the lights again so I ordered a light Ambien.  It quickly kicked in and I was out until about 4:00 for the morning blood draw and weigh in.  An hour later they came back for my 780 mcgs shots of  Neupogen to get some engrafting going on. 

This morning's numbers actually came back lower than yesterday so hopefully we'll see a rise tomorrow.  I took more platelets this morning but then managed to hold on to them throughout the day.  Most of today I maintained a low grade fever between 99-101.  Dr. Burt ordered oral Prednizolone 30 mg as this is his normal "taper" from the rATG.  I was getting 125 mg IV Solumedrol because I tolerate it better but because the fever wasn't ceasing he moved me to the Prednizolone.  This kept the fever under control and limited the headache but for some reason my walking still wasn't great.  I think it's the effects from the higher fevers in the past few days which caused dehydration and spasticity.  This steroid makes me very hyper and jittery so I tried to log some miles in the hall to burn some fuel.  I only got 7-8 laps in before I returned.  My left leg was just not keeping pace and even with the assistance of the IV pole no records were broken today. 

I needed to calm down so I ordered some IV Attivan .5mg.  For the rest of the day I have been caught in this weird zone where I need to sleep immediately for 10-15 mins and then I'm up for an hour or so.  One unexpected symptom the past few days is I'm urinating literally every 10 minutes when I'm awake.  Thankfully this subsides during sleep but the urgency is so strong I only have seconds to take care of business.  I'm told, you guessed it,    "This is not something the doctors haven't seen before"...  Tomorrow I will tell them I have begun belching from my ears to see what they say!

So I realize in reviewing this post there's not a lot of positive aspects.  I pretty much described my day as playing the part of a leaky bald dude who's greatest accomplishment was dragging his dead leg around the hall in gown and gloves for a few minutes.  However, please consider the following positive accomplishments:

1  This is the 2nd day in a row the kid from around the corner didn't run by screaming into my room "Hey Howie Mandel your show Flashmob sucks"!! 
2  This is the 15,705th consecutive day I am NOT on ESPNs not top 10 list
3  This is the 4th week in a row I'm not dumping $200 in gas into my SUV :)))))

Day + 6

There have been a couple of interesting developments yesterday and today that I have no idea how to interpret but I thought I'd pass them along.  For the past few years as my MS has progressed my ability to feel certain stimuli has changed.  In some areas of my body I have hypersensitivity and in other areas I have all but lost sensation.  For example, you know when you get an itch on your back and you tell someone e.g. spouse, neighbor, mailman hey scratch my back!  It starts in one area and then you say left, left, up, down, there Ahhhhh!  That has not happened to me for a few years because touching my skin causes irritation and pain in most cases.  Yesterday afternoon I had an itch on my back and I asked Bea to scratch it.  I felt the itch spread first left then right, up then down!  It was like electric rice krispies popping all around my back.  I could literally feel electricity reaching locations on my "grid" that had been shut down.  Bea scratched and scratched all over my back and it was the most amazingly satisfying feeling. 

The second development happened during my shower as I was sitting in the chair to wash my feet.  Normally touching my hypersensitive left foot causes uncontrollable spasms in my foot and leg from the stimulation.  It's sort of like when you scratch a dog on their back and their leg starts shaking. Well today I scrubbed my foot and there were no spasms!  I wonder if I'll still chase the newspaper boy on his bike??

Lastly, after my shower today I was applying copious amounts of face cream on my bald bean and face.  All of the chemicals have really dried me out.  I noticed I could actually feel a slight coolness from the cream in the jar.  For the past year or more I had lost heat/cool sensation in most of my fingers.

Is it possible that within one week of chemotherapy treatment that destroyed the roaming autoreactive T and some B cell lymphocytes that were literally hunting and killing live healthy tissue my oligodendrocytes have created some new myelin and actually reparired a small amount of damaged axons to allow for normal electrical conductivity?  Certainly a bit early for this conclusion but cool stuff nonetheless.  I can just imagine Dr. Burt's face after presenting my scientific theory for this one...

I'm sitting in my chair hooked up to the IV pole receiving a big 'ol bag of platelets.  We're trying to avoid another fever spike like last night and this morning.  About 3:00 AM today my fever spiked and my head was pounding.  Unfortunately it didn't subside until about 3:00 this afternoon despite great efforts of the nursing team to do all they could to make me feel beter.   It was honestly the most difficult 12 hours of my admission so far.  The NP Amy came in this morning to look at the numbers but primarily to give me a pep talk and tell me to hang in there (as if there were another option??). They all care so much but sometimes you just have to ride it out. 

It's very interesting that the most difficult part of this process to determine is if/when your body develops fever due to the suppressed immunity.  Modern science has come a long way to prevent or at least minimize the side effects of the actual chemotherapy agents but the problems start if your body develops fever.  Dr. Burt was hesitant to give me more IV steroids because they can actually cause different complications but because the fever was so persistent and causing so much discomfort he relented (Come on man just give me one more I swear I'll stop I swear!).   In addition to the steroids I'm hooked up to the IV pole basically 24 hrs. a day again for fluids and the antibiotics to keep me hydrated after all of these fevers.  I have lost 9 lbs. since I arrived mostly in water weight so I've got some eating to do!

Bea left about an hour ago to stay in the apartment tonight. We had a rough night and morning and  she didn't get much sleep either.  Hopefully we're on an upswing that will last until my white blood cell numbers start coming up in the next few days.  At that time the fevers should stop and I can begin a proper recovery from HSCT. 

Before Bea left we went for a long walk down by the water and took this picture of the boats on Lake Michigan.  Ok, Bea went for a walk and I waited for her in the bed Zzzzzz.

Day + 5

In the past few months I have discovered different forums and groups populated by people who have had HSCT for autoimmune diseases, some specific to MS and some even more specific to HSCT for MS by Dr. Burt in Northwestern University.  Most of these people have their own independent blogs in addition to postings of studies, papers other publications in the public forums like thisisms.com and closed Facebook groups for HSCT patients (don't you wish you could join that group??).  Most of the independent blog type data content was incredibly helpful through the research, application and preparatory phases of HSCT.  The level of specificity with which each "blogger" described their symptoms was helpful yet alarming. 

At this moment there are two women going through HSCT these same weeks as myself. We were introduced by George Goss whom in an earlier post I introduced as the single greatest source of HSCT for MS information in the world.  He is a good family man and a physicist from CA with the "go to" blog source for all data, studies, facilities etc.  His URL is in an earlier post.  He received HSCT for his Secondary Progressive Multiple Sclerosis (SPMS) 2+ years ago in Heidelberg Germany.  He reports that his disease has stopped progressing 100% AND he has experienced a 50% reversal of physical deficit based on his pretransplant EDSS.  George works tirelessly for the personal satisfaction of educating others about HSCT for MS and to share how well it has worked for him.  I look forward to meet George one day. 

While helping us all individually, George thought it would be helpful for us to be able to share the experience of planning the HSCT journey together.  Melissa, Elin and I have communicated by email through our procedures just to provide positive energy from different facilities and different continents.  Elin is in Sweden undergoing a myeloablative BEAM protocol and Melissa is in Israel for a nonmyeloablative treatment similar to mine.  I'm happy to report both Elin and Melissa are doing great.  All of our "stem cell birthdays" were this past week.   Both of their blogs have maintained a refreshing positivity despite the inevitable difficulties of HSCT, and unlike most other HSCT blogs that focus usually on what went wrong during their day or week.  In the spirit of my two other MS-Keteers, I will attempt to describe my day by highlighting a few positives to inform you of the daily events.  Here goes: 

1  I was not arrested or detained for any measurable period by local, state or federal authorities.
2  I was not hit by a bus or any other motorized/mechanized vehicle within the last 24 hours
2  None of my teeth were either forcibly removed nor did they fall out on their own
3  There were no (reported) fires in either this hospital ward or the hospital property in general
4  I did not bring a child with me into an electronic tanning machine prompting national media       attention (if you're reading this outside of NY you probably won't get that joke)

As you can see clearly, this has been a very good day!  A few other things did happen that I would categorize as worthy of mention.  For example, a short while after completing my blog post last night the nurse determined my PICC line was clogged fuller than a Paula Dean coronary artery.  This took about 90 minutes of on and off access to my PICC line to clear it.  She used medication to inject and try to start the flow again.  It was slightly alarming as this is the 44cm line from the inside of my right bicept and fed through to the exterior of the superior vena cava of my heart.  If we can't get blood pumping from there, we gots a problem.  No matter what "challenge" you encounter here at Northwestern EVERY single person is trained to maintain the same positive theme.  A few examples of these are:  "Every person is different and experiences HSCT in a different way", or " It's not uncommon to see this as a response from the chemo", or my favorite, "It's not something the doctor hasn't seen before". 

Before my brother left last night I did feel weaker but I attributed it to the enormous amounts of energy wasted trying to will my NY Rangers past the NJ Devils in the playoff game last night.  It went for nought as we were eliminated in overtime from the quest for Lord Stanley's cup.  In truth, for the first time ever I wasn't terribly heartbroken as I do get a little too "wrapped up" into it and this is not a good use of limited energy.  During a morning Skype with the family in NY, I could still see how angry our son Matthew was with the loss.  He's the most competitive kid I know and it was funny to listen and see him talk specifically about if they had only done this or that better they would have won.  I remember those days...

Most of last night was filled with nurses and techs so sleep wasn't long or restful.  By 7:00 this morning I was up with fever, headache and overall weakness.  The fever lasted throughout the day ranging from 99 to 102 but I was assured, "this is nothing the doctor hasn't seen before".  I was given IV steroids to try to control the fever and pain and while they worked for a short while the effect didn't last and I was back up to 102 for most of the afternoon and evening.  I received a transfusion of platelets due to a measurement of 14 when it should be above 20 for my position as Neutropenic meaning <0.1

Fever in general is not good for MS patients because it usually exacerbates symptoms due to the fact that fever is the body's response through a sort of  hyper immunity mode to fight incoming invaders.  Unfortunately, my former immune system was attacking my healthy live tissue so when an attack is launched, the shock and awe of the campaign is usually felt by worsening symptoms.  Fever during Nutropenia is particularly serious because there's really nothing to attack.  My blood was drawn 4 times today to check for  bacterial and viral infections but there were none.  My body is just reacting to the fact I have a significantly suppressed immune system and it doesn't have any clue why.  It's like firemen being called to a house but can't find the fire so they just start destroying the house looking for something to do. (that one's for you JJ).

These fevers in my case cause a state of paralysis.  I can stand with support just long enough to pee, my hands and feet are completely numb and walking a few steps is possible only with help and I'm confined to the room.  The headache from this has been unrelenting all day.  Bea is here by my side. She's watching movie after movie on the new Kindle Fire my brother bought me.  Somehow, I'm a member of an Amazon Prime exclusive membership through the Kindle so we (I should say she) has access to an amazing library of movies, shows, music etc.  One of the many things I love about Bea is that she has a unique and innately positive perspective on the world. I call it "the world according to Bea".  She thinks we're sort of lucky to be in this Prime membership to have access to the free  video content.  I'm sure we're lucky enough to pay $40-$50 per month to get these free movies but it's just not to be dealt with today. 

About 30 minutes ago my fever broke and I probably lost 1-2lbs in water weight in 5 minutes of sweating.  I'm unhooked from the IV pole until about 2:00 AM at which time they will throw another IV medication on the line and after that I should be good until morning. 

At one point early in the evening Bea asked me if I was bored, knowing that I never sit anywhere for more than a short while at home, but honestly today I was too sick to be bored.

Tomorrow is a brand new day!!!

Day + 4

The day began with our daily visit from Dr. Burt and the team.  He gave me the usual nod of the head which I have now been conditioned to mean, you're fine, don't ask.  My brother arrived early so he met Dr. Burt and I mentioned my brother did a lot of business in Brazil so that was all it took for them to launch into a conversation of where they have been and what are the best restaurants and hotels in Brazil yada yada yada.  Hello?  It's me the skinhead in the corner in the pajamas you're supposed to be talking to!   Yesterday I blogged that I had a well thought out scientific theory that the problems experienced this week with fever etc. actually could be a very good sign because it confirmed my disease was still inflammatory and consequently had a much higher rate of success for this treatment.   the current success rate of completely stopping any further MS progression is between 70-75%.  However, if it does relapse most forms are more treatable by other immunomodulators.  Before he left I did present my logic.  His response??  "Ummm, not exactly..."  I told him it's my theory and it's not negotiable.  He chuckled and left. 

Here's a picture with the Wizard himself Dr. Burt, Amy Morgan his amazingly smart, compassionate and committed Nurse Practitioner, my beautiful wife Beatriz and I think Dr. Hi but not sure.  Dr. Hi has been to see me 5 times and says nothing except "hi" which I think is his name so technically he doesn't say anything except introduce himself each visit. 

I slept great last night and my day today was productive.  I worked, walked showered and read.  This is the first day without fever and it makes all the difference to my energy.  The HSCT for MS world is a buzz today because Dr. Burt published an editorial in the June MS Journal critiquing a position paper by Saccardi et al. related to HSCT treatment for MS.  It's very interesting yet controversial as it reiterates his strong opposition against myeloablative protocols for MS and performing HSCT on any MS patient without definitive inflammatory disease. 

My wife left mid afternoon for a shower and cleaning of the dishes of food she's brought me during the week.  The stress on Bea was evident today.  She's so strong and she has successfully managed this hardship with grace, courage and love without blinking once.  She stayed in the apartment to relax tonight becuasue my brother is leaving in the morning and we wanted to watch the hockey game. 

Below is the daily scorecard we watch until the numbers go up.  Pretty sophisticated eh?  I think they write the numbers in different color crayons each day...  By the way they paste this on the bathroom door each morning. 

The most important indicators are White Blood Cells which right now are <0.1.  The other key numbers are hemoglobin to allow my blood to carry oxygen and platelets to maintain a sufficient clotting capacity.  If either of the last two drop out of range I will be transfused with some O- go go juice!  So far so good.  Tomorrow AM at 6:00 I will start 780mcg of Filgastrin (Neupogen) in 2 shots to my lower abdomen.  This medication will "assist" the roughly 1 billion infused stem cells that were infused Monday and are currently swimming around without a care in the world to start getting serious with their lives.  The Neupogen sort of advises them it's time to settle down and start making a beautiful family of lymphocytes.  They recommend they go somewhere like in my pelvic area and they should do it soon.  It's an offer they can't refuse...  I hope that wasn't too scientific for yous.

That's a wrap for the day.  My brother just left and has an early flight tomorrow.  I can't thank him enough for his love and support.  He brought Bea and I great energy in a difficult few days.  The love and support shown to me these past few months by so many is enough for 10 men. 

Tiempo para hablar con Papa Dios... 

Day +3

Another interesting day had by all.  To start with, last night was the best night sleep in a week!!  I slept on the couch and but for vitals and blood work I slept through the night!!  I have NO idea how because Tim and I ate a whole pizza AND I ate a meatball parm hero before bed.  The steroids make me so hungry and while my choice wasn't the healthiest it was good.  Ginos on Rush rocks!! 

I moved to the chair around 7:30 AM to start on the NY Times on my new Kindle Fire from my bro and things were looking good.  Before I sat down to read I decided I would clean the room.  This consists of me putting The 4 armed IV pole in as close to the center of the room possible and me circling the pole with my IV line picking up as many things without tangling myself.  It was a comical sight but it felt good to be productive.  I think I counted 7 TV Channel guides around the room because every time one falls the nurse brings me a new one because it's contaminated and I tell her I will throw it out.  Around 8:00 my lovely bride arrived with hot homemade oatmeal and Starbucks (who's better than me???)   Shortly after, Dr. Burt with his entourage blew in for the morning wave and brief conversation about anything other than medicine, research, my health or my lab results!  He will talk for 20 minutes about P90X and hiking in Brazil but if I ask him about lymphocytes or T-reg cells he just sort of gets this look on his face like, yeah I would like to but I just can't explain it to you...  It's quite charming in fact and it does not come from a place of ego so it's fine with me

I caught up on some work and prepared for a call at 11:30.  The plan was to finish work, lunch, walk, shower, more work and get back together for dinner with Tim.  After the call Bea and Tim went to pick up lunch.  I laid down for a few minutes and felt myself losing steam.  After the PM IV antibiotics I assured myself I was just tired and needed to push myself to walk and I would feel great.  2 short laps later I pulled back into room 1569 and knew we had a problem.  Sure enough 2 hours later, after a shower, the fever was back and there I was again draped over Bea's back heading for the rack!  I was frustrated because the day started so strong. 

The nurse paged Amy and they hooked me up to 125mgs of Solumedrol IV steroids.  They continue to believe it's from the rabbit ATG.  Dr. Burt has 4 patients for SCT on ward right now and Amy the Nurse Practitioner said all of us are having a bad day.  Amazingly within 2 hours the fever broke and I could stand again!  There is a very interesting aspect to this which encourages me greatly.  Dr. Burt almost did not accept me for treatment because he was unclear if my disease was still "inflammatory" and therefore responsive to IV steroids or "neurodegenerative" which is a different form of MS and almost a different disease dominated by neuronal and axonal loss as opposed to relapsing and remitting disease exacerbated by inflammation.  The fact that steroids have such a fast and positive effect on my symptoms or inflammation is very encouraging that my disease is still in a great position to be ceased AND to experience some reversal of existing physical symptoms.  Now that's what I'm talkin about!!  I can't wait to test my theory on Dr. Burt in the morning meeting.  His answer will probably go something like this "Kevin?.... I have to go"  haha!

Anyway all is well that ends well.  We had a nice take out dinner from Rosebud on Rush with great pasta, salad, veal and clam sauce.  Tim, Bea and I really had a lot of laughs.  It's great to have the company and it's so hard on Bea because I know she feels the pain with me and it was just nice to laugh and feel good.  The best laugh was the restaurant didn't accept credit cards so Tim had to pay again! 

A Few Days behind...

Today is technically Day + 2 but I missed two daily posts so I'll include them in this brief post. 

This morning is Wednesday May 23rd.  I feel much stronger than yesterday and will hopefully walk a little today unlike the past two. 

Monday was the big day (Day - 0) or as it's known here my new Stem Cell Birthday!!!!

Hematapoietic (blood) Stem Cell Transplant (HSCT) is the highlight of our journey here in Chicago to pursue and kill my malfunctioning immune system that has affected my mobility, strength etc.

I started the "mobilization" process a few weeks ago by taking Neupogen shots twice daily to help increase the number of stem cells produced in my red bone marrow and circulating in my blood in many forms but generically called white blood cells. 

After 6 days of Neupogen I was attached to a machine to separate the new and circulating stem cells from my blood. The minimum collection required was 2 million/kg of my weight to provide assurance my body would have sufficient supply to return to me after the chemotherapy.  The collection was successful determined by a quick sampling. The cells were then treated with preservatives and frozen. 

For those considering this process with Dr. Burt or any nonmyeloablative protocol, stem cell transplant is not required to survive.  As Dr. Burt explains, he harvests and transplants his patients' stem cells to reduce recovery time.  Other protocols that use a myeloablative (more aggressive) protocol destroy the immune system completely and require a stem cell transplant to survive.

The team arrived with my frozen stem cells still in the cryopreserve tank.  The scene took on an air of importance as people took their places verifying ID #'s, batches and preparing for the infusion.  The tech began thawing my cells from the liquid nitrogen tank and a minister arrived to bless the cells before infusion.  She said a very nice prayer thanking God for the physicians and researchers who have made this possible and the team to put them in today.  We were also treated to a visit by Dr. Burt and Amy Morgan who stayed for the blessing and most of the infusion. 

Once the cells were warm Kelly hooked them up and off they went.  The first few minutes are crucial to make sure allergic reactions to the preservatives do not occur. During the transplant my blood pressure and heart rate were constantly monitored.

I felt a very warm sensation throughout my core as they reentered my body.  I closed my eyes and said a short prayer asking God to please allow this process to cease the process causing the damage from this disease and to express thanks to have this opportunity so many others do not.   

Twenty minutes later, the approximately 968,760,000 Hematopoietic Stem Cells were sent to battle!!

DAY + 1

The evening of Day 0 was uneventful.  Overall I was feeling ok and strong enough even that Bea agreed to sleep in the apartment.  I turned in around 10:00 to try to get a good night sleep.  The hiccups and acid reflux I have had are still with me basically 24/7 despite best efforts of the team to eliminate them.  Like so many pieces to this complex treatment, people react differently.  My hiccups started almost immediately after chemo last week and have not left.  On Monday evening they continued making it difficult to sleep. 

When I dozed off I encountered the craziest, scariest series of dreams I have ever had.  Good old fashioned heart pounding sweat through your sheets nightmares.  Again, no one knows why or if any one or more of the toxic chemicals react on the body this way but this is how it has affected me.  I vividly remember every detail of all of them and it made for a bumpy night. 

Before long nausea and vomiting set in as well so Monday night wasn't the best.  I texted Bea around 7:00 AM asking her to come and in what seemed like 8 seconds she walked through the door with homemade oatmeal and had already delivered the pasta dish she cooked the night before at 9:00 to the nurses for storage for our dinner. 
Bea sat with me and I felt myself weakening by the minute.  I developed fever and literally couldn't stand up.   The team came in and were unclear what was causing the reaction and fever.  I had also developed a rash and wasn't urinating.  I asked Bea to move me to the bed and it took both hands on her shoulders holding steady to make the 4 steps.  I couldn't close my hand or wiggle my toes and was really scared.  For about 8 hours yesterday I was really uncomfortable.  You know when you have a dream where you can't move and when you wake up you're so happy it's over?  This was a day of awful dreams and then waking up and still not being able to move! 

Dr. Burt checked in midday and ordered more steroids and fluids to reduce the fever.  I awoke around 5:00 at the conclusion of I think Bea's 8th movie...  Within a few minutes I knew I was on an upswing.  Before long I moved to the chair and felt some energy return to my body.  A short time later Dr. Burt came back for a third time and was please to see me in the chair with eyes open.  He explained that while he can't be sure, some patients with neurological diseases have a bad reaction to the rabbit derived polyclonal antithymocyte globulin which is used because it is a drug particularly effective in killing human T-cell lymphocytes.  This may have caused the fever and fever with MS patients always exacerbates symptoms.  The combination was unpleasant BUT by 6:30 last evening I was sitting in front of the biggest bowl of my wife's spaghetti with meat sauce with peppers, onions and she even added some chick peas... Heaven!  To continue the party I was hankering for some ice cream and we found this web site ceodeliveries.com that delivers from a huge number of restaurants.  We found Bobtail Homemade hard pack ice cream.  I went with the 3 scoop brownie sundae with the works.  Bea went with the 2 scooper and a good time was had by all!

We saw the final of Dancing With the Stars and because Bea had the remote control on the couch she determined it was time as she says "para hablar con Papa Diso" and called it a night...  It was joyous to just sit in bed with energy, able to move and stand on my own!!  Ahh simple joys!!

I read for a few hours on my computer.  I still had the hiccups but was content to not be delerious like earlier in the day.  Finally I fell off to sleep about 2:30 and within minutes BAM BANG ZOOM was right back into those crazy chemical induced dreams sweating like crazy! 

I woke up quickly and decided life would be easier with as little sleep possible the next few weeks.  On and off for the rest of the night wasn't bad and slept until about 7:00. 

DAY + 2

Today has been exponentially better than yesterday.  My numbers are down to .01 wbc/kg of my weight so technically that's I'm at rock bottom!  I managed a short walk in the AM, took a long shower and got a few hours of work in. 

Around 2:00 Amy Morgan the Nurse Practitioner stopped in to see if I was still strong.  The team get's so happy when they see their patients smiling!!  It makes me happy too!!

My older brother Tim arrived from NJ for a visit.  As much as I tried to convince him it wasn't necessary for him to come, I knew he would and I'm very glad he did.  He is my best friend and a busy guy so it means a lot for him to drop everything to make the trip.  And he brought me a Kindle Fire very cool!!  Tonight we will try to listen to the NHL playoff game on the Internet.

Day -1

Yesterday was a no good really bad day.  This is the inevitable result of literally pumping gallons of toxic chemicals into your body over a period of 5 days.  Bea and I awoke around 6:00 as ususal to plan our day.  By 6:02 the plan was set and we decided to keep it similar to the day before...

We ate a light breakfast and after finishing the paper I went out for a walk in the halls.  I mixed it up a bit by taking a Nascar route by circling the hall to the left.  I realized quickly it wasn't going to be a record day as I was feeling a little sluggish and imbalanced.  I decided to take it slow and get as far as I could.  Before long I was practically trampled by another stem cell transplant patient speeeeding down the hall in the opposite direction with her IV pole flailing willy nilly.  I casually moved to the side to feel her breeze by me.  I admired the enthusiasm but her insistence to make eye contact and actually smile with every lap was a bit much.  The flowing blonde wig was just gratuitous.  I figured she was probably a newbie day -5 or -4 and after a few days she would feel like the rest of us.  After a few more passes she told me she was on her last lap and I would have the track to myself.  I managed a smile and wished her a good day.  When I made my way around the other side of the ward I saw her going into her room and realized this was no newbie.  This was the first woman I saw when we arrived earlier last week.  I remember she was half sitting half lying in her bed with no hair and ashen gray.  The pain and suffering on her face evident as she just stared aimlessly toward the wall.  A woman that appeared to be her mother was standing over her looking down just as pained as her daughter.  The realization that the woman I saw last week in such bad shape was now zipping around the hall was great inspiration. 

When I returned to my room I showered up and prepared for a few more hours of nothingness.  It's really difficult to read anything more than headlines and short stories as my mind just feels scrambled so I watched the playoff hockey game.  Each day I wipe down the furniture with the antiseptic wipes they leave in the room.  The smells in the room are difficult to tolerate combined with the bad tastes from the frequent injections of saline solution to cleanse the PICC line before blood draws.

Dr. Burt started me on strong IV antibiotics in the morning to fortify my very limited immunity.  Yesterday's WBC count was 2.1.  He also gave me a medication to assist with the urinary discomfort from the excessive 3x daily Lasix for the past 5 days.  In the afternoon I developed a lot of pain and incredible pressure in my head and ears.  It was really bad for a few hours.  Vomiting a few times relieved some of the acid reflux but didn't do much for the pain and pressure in my head.  The nurse called the physician and he prescribed some ear drops but when she attempted to put them in my ears it didn't penetrate my inner ear. 

A very positive note was around 3:00 AM I called the nurse because my pumps were beeping and when she came in she unhooked my LAST chemotherapy injection!!! 

It was a tough day but today is the Stem Cell transplant, Day 0!  Onward and upward!

Day -2

Another beautiful Chicago afternoon!  Sunny 75 with a cool breeze off the lake... So I'm told.  I can see it but that's about it.  All is well inside too.  My day began at 4:00 AM with the morning drill of blood draws, vitals and weight.  It appears I'm packing it on since I'm here.  I've gained a few kilograms which I'm told is not uncommon considering the vast quantities of fluids being pumped in to me. 

The early morning hours continue to be very productive for me.  I got a lot of work done between 4-7 and then Bea woke up and we started our day together.  We had a sleepover party last night but unfortunately my IV alarms went off pretty much every hour so it wasn't very restful for her. 

Dr. Burt or as I like to say (the Wizard) came in this morning with no entourage I guess because it's a busy weekend and Chicago is almost on lockdown because of the NATO summit here in town.  We had a nice talk.  He stayed for about 20 minutes and really does his best to try to squeeze out a little bit of his massive knowledge and experience into bite size pieces for laymen like myself.  He has such an interesting perspective on this treatment, physicians and healthcare in general.

My numbers are coming down as expected.  My WBC went from 12 to 4.3 today.  By tomorrow I should be pretty close to neutropenic which technically is <0.1.  I can feel myself losing energy during the day today.  After breakfast I got my walk in for the day.  I completed a mile thanks to the support of the IV pole.  Without the pole or assistive device I couldn't walk half the distance. 

Today is the last day of Cytoxan chemo and tomorrow is the last day of rATG.  Monday is Day 0 and transplant day!  From there we will wait for numbers to rise. 

My only problem is the worst acid reflux caused partially by the hiccups and partly from the chemicals themselves.  I do feel an overall weekening as well.  Bea just returned with fresh clothes to settle in for the night.  I think tonight will see an early end as it's 6:00 and I'm almost done.  I will eat a little fish and veggies and hit the rack. 

Happy Saturday night to all!  I'm treating my wife to a dinner with me in the room. 

Day -3

Today we got an early start on the day again.  The team came in around 4:00 AM for EKG, blood draws and vitals.  I did manage to nod off again until 6:30 morning meds.  After that I got up to prepare for a work call at 8:30.  The blood work came back around 7:00 and my numbers are still very high which keeps me with a lot of energy. The human body is amazing.  My white blood cell (WBC) count is above average as a result of the invasion of chemotherapy agents in my system so my body produces more WBCs to fight the chemo.  This is a fight that can't be won (and why we're here) particularly with the escalating dosage of chemo each night.  Tonight my rATG is at 125mg and will remain that way for the next 3 nights in addition to the 3,945mg of Cytoxan. 

After breakfast we went for a walk and today I actually counted the laps around cell block 15 to make sure it was one mile.  It felt good to walk.  Because my WBC count is high there's a risk of an MS exacerbation so they pump me full of steroids prednisolone and Solumedrol 1g.  This in addition to the high WBC count makes me quite jittery and as Bea said a little too hyper.  We had a visit from the chaplain today and Bea said I talked for 35 minutes straight without stopping. There is a little boredom at play too. 

Tonight I just ate and am ready for bed.  I'm wearing the new comfy jammies Bea bought for me.  I think they kicked up the Benadryl tonight to match the higher dose of rATG.  Bea is sleeping with me tonight which makes me feel great.  The staff here really goes out of their way to not only make the patient comfortable but family and visitors too.  For her pull out bed they brought her pillows and an extra foam mattress to go on top of the cushions.  My sister came back tonight and we had another nice visit before they left for the train to NY. 

Tomorrow will be exactly the same as today...  14 more days of this??  Yikeeeees. 

Good night!