[DAY +4]  Last night I won all the battles and made it to the bathroom whenever the urge to go woke me up.  Only negative is that the urge came about 10 times over the course of the night.  The result was not a great sleep, but great sleeps will come.  If there is an overload at the Tel Aviv water treatment facilities, I'm pretty sure I know the cause.

Today, my Dad designed a walking program that had me walk the floor of the hotel using the wheelchair as a walker.  A difficult task, but a great idea, and we did it. This program will definitely be repeated.  I also walked the wheelchair to the main exit, walked outside a bit (another beautiful day here), and then was wheeled around outside some.  I even got to sit outside for a short time.  The feeling of the sun and wind on my face was fantastic.

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Future HSCT patients: bring a shoehorn.  Your feet will likely swell from all the liquids you ingest intravenously.  Mine did.

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This HSCT journey is a solo journey - I am the one undergoing the treatment.  But, other than that there is nothing solo about it.  My local caregivers (Dad & Diana) have been with me every step of the way providing physical & emotional support.  They feed me, pick me up when I fall, held the catheter bag when I showered (Dad got that enviable task), make sure I follow all the rules set out by Dr Nadir, make sure I get off my ass and move around, and generally are just there.  And all of our friends and family who send notes & texts (to both Anne and I), read this blog, attended/helped with fundraisers, and who we know are ready to help with anything at the drop of a hat.  And my wife and children, when I see them on FaceTime, or even just see their photographs, happiness consumes my body.  So, my impression is that this HSCT journey is a journey of hundreds.  And it will be completed together.

[DAY +3] The night without the catheter meant multiple trips to the bathroom and back, with the goal of remaining upright (wall-walking) and getting there before my urge to go defeated my ability to hold.  I lost a couple battles, but I ended up winning the war.  Losing those battles had the effect of strengthening my resolve, which resulted in me taking many steps this morning up and down the hallway of my room.  I am pleased with that.

Today is the first day of the weekend here (Shabbat starts this evening at sundown), so most people are off.  I met Nurses Ashraf and Hussein up at the clinic to provide blood and urine samples for testing.  There is still blood in my urine (although less than yesterday), so another day of fluids intravenously is in order, says Dr Nadir.

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Many people have sent me texts.  I do receive them, so thank you.  However, in order to avoid large data and roaming charges, Rogers advised me to turn off all cellular data on my phone, and only use the local wi-fi.  As a result, sending texts is very inconsistent.  I get a lot of "Message Failed to Send" notifications.  I attempt to respond to every one of the texts I receive, but I am at the mercy of a technology of which my understanding is weak, so many attempts have failed.  The only device I can consistently send texts to without issue is my daughter Elaina's iPad.  I have no idea why that is the case.   It's nice to hear from people, so please keep the texts coming, just understand that a reply cannot be guaranteed.

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Today I am fantasizing about eating Dida's sour cabbage with smoked bacon & ribs.  If you are lucky enough to taste this masterpiece of a meal, you will wonder where it as been all your life.  Having this meal is definitely an option during Christmas at The Botica's (my in-laws), but unfortunately for me I will not be able to make it there this year.  I apologize in advance if I aggressively push you out of the way during Christmas 2015 in order to get me some kiseli.

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I like this one too:
https://www.youtube.com/watch?v=AEI85hYB_IE

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My condolences to our friends Marcie and Jay Donahoe.  Thinking of you guys.

[DAY +2]  Had some blood in my urine yesterday (apparently not unusual post-chemo), so last night I stayed in the clinic.  This was a precautionary measure, and I was accompanied by several bags of fluids and the night nurse Hussein.  Blood is still there today, but it is not getting worse, so when I am done intaking my second bag (currently underway), then I get to sleep in my hotel room (which I almost begged for), if I drinks lots of water and promise to contact Hussein at the first sign of discomfort. I promise.

Another event for today was the removal of my catheter.  Now my lazy ass has to get up and go to the bathroom under my own strength.  Moving around is definitely good for me to do, but I am really gonna miss bring able to pee in-situ without consequence.

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The last couple years of our (Anne and me) life together have been eventful, to say the least.  We've watched with joy, the growing of our girls from babies to toddlers.  It's hard for me to write just how joyous it has been, so you'll just have to believe me when I say it's very joyous.  We've also witnessed with both disbelief and anger (mostly mine) the deterioration of the abilities of a healthy male in his thirties due to MS.  That motherfucker worked quick.  Through it all, the joys, disbeliefs, and whatever other emotions were present, there has been one solid rock in my life - my wife Anne.  It must be difficult to watch your spouse go from partner to dependent.  But she did, soldiered on, raised two beautiful young girls, kept our mouths fed, kept our clothes clean, and kept our house tidy (and more...).  All, while no doubt ignoring her own needs to keep us healthy and happy.  We love her for it.  I love her for it.  I am thankful every day that I was the lucky one who got to marry Anne.   I hope our girls turn out to be just like her.  She is tough, funny, smart, loveable, beautiful, a straight-shooter, doesn't put up with nonsense, and many other great things.  Marko and Ika, you must be proud.

[DAY +1]  I am out of the clinic, had my pic line removed, have showered (with help from Dad & Diana).  Ashraf says no raw fruits or veg for 2 weeks.  That's too bad because right now I am dreaming of eating pomegranates and oranges outside in our backyard with family.  Aly puts her eyes over to my direction, tries and peer into my bowl, and in her babyish voice, asks "What you eating, Dada?".  I tell her, and ask her if she wants some.  She replies, in her unique way "No.  I got some.  See?".

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Last night in the clinic I slept the most soundly I have since I arrived in Tel Aviv.  Probably a few reasons why, but a major one is that the night nurse Sami provided me, after I asked him, with a sleeping pill.  Wow did that pill work great.  The previous nights in that clinic weren't so great in the sleep department, so I was not looking forward to another one.  Thank you Sami.

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I had a good chat with Dr Nadir today.  He said (I am paraphrasing here): "Over the next two weeks, as a result of this procedure your muscle mass will deteriorate.  Therefore, in a few days, when you are able, you must begin to eat protein, and move around some on your own two feet.  Otherwise, you will lose your muscle mass and be glued to a wheelchair.  It will be more difficult for you than for a normal length person, since you are long and lean, 'like a shoelace'. It is a matter of self-discipline, there is nothing I can do to help you."
Excellent information, and very concise.  I expect nothing less from Dr Nadir.

As Anne says, "You asked for this, now it's your turn to take charge.  Or else."

I agree, a big thing that HSCT provides people with MS is the ability to control their own destiny again.  So I will do what is necessary.  Whatever it takes.

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I feel like I have a new life.  I am able to see the realm of possibility again.  For that, I am very grateful.

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A few pictures from the recent days:

Day -2, with pic line inserted, about to undergo BMA, then chemo:

Day +1 (today), eating plain toast and tea

[DAY 0] Today is Day 0.  I have been waiting for this day, and am happy it is here.  Today I get my bone marrow/ stem cells back.  For those who want to know: I believe I read somewhere that the 'return' of a patient's bone marrow / stem cells is not absolutely necessary, it serves to speed up recovery.  The important part of HSCT to stop MS, is to kill some or all of the immune system using chemotherapy and conditioning (every HSCT facility uses a slightly different protocol).  That part is done, so today is the day I get stem cells back.

A big thank you goes out to Sue, the sister of Kate Paterson (also here for HSCT, 2 weeks ahead of me).  Sue is part of Kate's caregiving team.  Yesterday, Sue took one of my caregivers (Diana) with her to the local market,and told Diana all about cooking for / feeding an HSCT patient post-transplant.  What worked, what didn't, and what the Doctors and Nurses had to say. Diana said it was very enlightening,  and very informative.  Thank you, Sue.

At about midnight last night I vomited, and again this morning after trying to eat something.  Nothing crazy, very typical, and Ashraf said "Good".

One more night at the clinic, and then maybe tomorrow I'll be released to my hotel room if all is good.

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Here is a nice picture of Elaina and her Dida (Anne's dad).  I remember when he had his brain surgery about 3 years ago he said that his non-stop hiccups were a real pain in the ass.  My hiccups come and go, but when they are here, they are definitely a real pain in the ass.

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Happy Veterans Day to all veterans.  A special Happy Veterans Day to my grandmother Molly Sharpe, a veteran of WWII.  We love you (Great) Grandma.

[DAY -1]   BMA done, 2 rounds of chemo done, one more dose today, and tomorrow I get my bone marrow / stem cells back.  The best thing about the situation today is that yesterday during BMA, I had a catheter put in.  You are loaded up with fluids throughout these two days (mainly to protect your kidneys from the toxicity of the chemo), and not having to even think about getting to the bathroom before things get messy is great.  You want me to intake more fluids?  No problem.  Dunno how long I get to keep it, but I'm in no hurry to get rid of it.

Managed to take a shower this morning (with the help of dad & Diana).  Very refreshing.  For future HSCT patients here, I believe a good caregiver is an absolute must.  The patient needs help with basic needs (eating, bathing, traversing to and from your room).   The more caregivers, the better.

[DAY -2] Last night, many hours after receiving my last Campath shot, I thought to myself "I'm not feeling to bad".  Well, the Campath Gods must have heard me because I noticed a rash on both arms and both legs at about 8pm.  We contacted Nurse Ashraf and told him about it, he said it is expected so take a cold shower and drink lots of water.  Done and done. It's mostly gone now, but I can feel it bubbling just below the surface of my skin, ready to show itself should I scratch somewhere.  So I am resisting all urges to scratch. So far, so good.

Big day for me today.  I have completed the Campath conditioning, so it's time to remove my bone marrow / stem cells and then be hit with a good dose of chemo today and tomorrow, and then put stem cells back on Tuesday.  Anne always says "Strong mind, strong body".  I agree, so strong mind it is.  She also reminded me to put on the eye of the tiger, so I will put it on before game time this afternoon.

Once the stem cells are put back into my body, it takes 10-14 days for them to 'engraft'. During that time, many of your body's protection mechanisms are not what they need to be, so great care must be exercised.  Germs are something your body cannot deal with, as is bleeding (your body has lost the ability to stop it). So, I will be wearing a mask anytime I leave the room (likely only for blood testing at the clinic), and we all will be using alcohol-based hand sanitizer like mad.  Every handle, every doorknob, every time you touch anything, you get the idea.  I probably won't be shaving either, because knowing me I will cut myself.

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One of the first people to have HSCT for MS is from Australia.  Her great story, which I got from the HSCT Group on Facebook that I am a member of, is here:
https://www.youtube.com/watch?v=JU3oJEJT_yo

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I saw a post about pomegranate seeds on my wife's Facebook today.  Her mom (Baba) will peel 10 pomegranates (very time consuming) and Anne, Elaina, Aly and I will finish them off in a couple days.  They are absolutely delicious, and apparently very healthy too.  If I could only eat one thing the rest of my life, I think they may be the winner.  I cannot wait to have those delicious seeds again!
Some of Baba's recent handiwork: