[DAY +48] This morning my physio guy came by, and I was put through an assortment of exercises. It was challenging, but definitely necessary. His comment to me was "You are stronger today then you were when I saw you last.". I have a long, long way to go to get to where I want to be physically, but getting stronger is good.
------------------
I am very thankful that HSCT is available for MS patients, and that I was given the opportunity and the necessary support to obtain it. The link below contains the story of Debbie Purdy. She never had the opportunity to undergo HSCT for her MS. I never got the chance to meet Debbie, but I salute her for taking control of her life when there was very little control available to her. Rest in peace, Debbie.
http://www.bbc.com/news/uk-england-leeds-25741005
Monday 29 December 2014
Sunday 28 December 2014
[DAY +47] This morning's exercises:
(1) Marching - 3 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(2) Standing on one foot (while holding onto chair), write numbers with other foot - 3 x 10 per leg
(3) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(4) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(5) Calf raises (on stairs) - 3 x 10 [legs shake during this exercise]
(6) Lunge - 3 x10 per leg
(7) Pushup (kneeling) - 2 x 10
It's getting easier to do lunges and pushups - my 'form' is much improved - so I must be getting stronger. Onward and upward.
--------------
To my knowledge there are three types of MS: (1) relapsing-remitting (most common) (2) secondary progressive (secondary, because the disease morphs into this after some initial timeframe as r-r MS), and (3) primary progressive (primary, because this is the initial diagnosis; this is what I was diagnosed with). The question of whether all 3 types of MS are auto-immune diseases has been debated recently. There has been discussion in scientific circles that progressive MS may not be auto-immune, and therefore it likely has a different 'driver' of the disease than r-r MS does. It has been established that progressive forms of MS have more of a neurodegenerative (death of nerve cells) effect on the patient's central nervous system, and relapsing-remitting MS has more of a demyelination effect on the patient's CNS. The reason I bring this up is that somebody in the HSCT forum I am part of asked about the r-r vs progressive debate, and the best explanation I have read to date was provided by one of the more knowledgeable forum members, George Goss:
Autoimmunity and neurodedegeneration are not mutually exclusive as both can exist simultaneously. I have heard many doctors claim that relapsing and progressive forms of MS are two different diseases. But what are such statements based upon? My own view is that such belief is false and based solely upon superficial manifestation with no supportable underlying scientific basis (i.e. based upon superficial observations and no in depth research). Although it is true that the underlying etiological cause of MS is still a mystery, it is not necessary to know what actually causes it to treat it because the pathological operating mechanism of MS is reasonably well understood; self intolerant (lymphocytic) autoimmunity. Relapsing MS 'manifests' as demyelination, and progressive MS 'manifests' as axonal dystrophy (neurodegeneration), but this doesn't mean that they are fundamentally different diseases. The most plausible and rational explanation that fits the facts is that they are indeed all the same disease but simply with differing antigen binding repertoires in which progressive MS has an expanded epitope compared to the episodic form. This is why RRMS most often transitions to SPMS in which evolution epitope spreading (diversity expansion) occurs. This explanation would also perfectly explain why HSCT is the MOST effectively demonstrated medical intervention for ALL forms of MS, both relapsing AND progressive. . . .http://media.wayne.edu/2011/02/22/wayne-state-university-researchers-publish-results-settling
My opinion (based on info I have read) was, and is, similar - MS is an auto-immune disease. No matter the type. And therefore, my belief is that HSCT is a feasible treatment for all types of MS since they are all auto-immune diseases, and here's my basic analogy: If I have a disease due to my liver secreting stuff that attacks my intestines (I have no idea, nor do I care if this is even possible - but it works for my analogy), I would guess that Doctors would opt for a procedure that goes after the problematic parts of my liver. Since my disease is due to my immune system attacking my central nervous system, I opted for a procedure (HSCT) that goes after the problematic parts of my immune system.
Different types of MS result in different damage to one's central nervous system (as stated above), therefore there will be different requirements for healing (re-myelination, and/or establishment of new nerve pathways since nerve cells are very slow to grow, and may not even grow at all) once the disease is halted. Healing occurs at different rates for different people, and healing may not occur at all, since it is very patient-specific.
I need a sandwich.
(1) Marching - 3 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(2) Standing on one foot (while holding onto chair), write numbers with other foot - 3 x 10 per leg
(3) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(4) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(5) Calf raises (on stairs) - 3 x 10 [legs shake during this exercise]
(6) Lunge - 3 x10 per leg
(7) Pushup (kneeling) - 2 x 10
It's getting easier to do lunges and pushups - my 'form' is much improved - so I must be getting stronger. Onward and upward.
--------------
To my knowledge there are three types of MS: (1) relapsing-remitting (most common) (2) secondary progressive (secondary, because the disease morphs into this after some initial timeframe as r-r MS), and (3) primary progressive (primary, because this is the initial diagnosis; this is what I was diagnosed with). The question of whether all 3 types of MS are auto-immune diseases has been debated recently. There has been discussion in scientific circles that progressive MS may not be auto-immune, and therefore it likely has a different 'driver' of the disease than r-r MS does. It has been established that progressive forms of MS have more of a neurodegenerative (death of nerve cells) effect on the patient's central nervous system, and relapsing-remitting MS has more of a demyelination effect on the patient's CNS. The reason I bring this up is that somebody in the HSCT forum I am part of asked about the r-r vs progressive debate, and the best explanation I have read to date was provided by one of the more knowledgeable forum members, George Goss:
Autoimmunity and neurodedegeneration are not mutually exclusive as both can exist simultaneously. I have heard many doctors claim that relapsing and progressive forms of MS are two different diseases. But what are such statements based upon? My own view is that such belief is false and based solely upon superficial manifestation with no supportable underlying scientific basis (i.e. based upon superficial observations and no in depth research). Although it is true that the underlying etiological cause of MS is still a mystery, it is not necessary to know what actually causes it to treat it because the pathological operating mechanism of MS is reasonably well understood; self intolerant (lymphocytic) autoimmunity. Relapsing MS 'manifests' as demyelination, and progressive MS 'manifests' as axonal dystrophy (neurodegeneration), but this doesn't mean that they are fundamentally different diseases. The most plausible and rational explanation that fits the facts is that they are indeed all the same disease but simply with differing antigen binding repertoires in which progressive MS has an expanded epitope compared to the episodic form. This is why RRMS most often transitions to SPMS in which evolution epitope spreading (diversity expansion) occurs. This explanation would also perfectly explain why HSCT is the MOST effectively demonstrated medical intervention for ALL forms of MS, both relapsing AND progressive. . . .http://media.wayne.edu/2011/02/22/wayne-state-university-researchers-publish-results-settling
My opinion (based on info I have read) was, and is, similar - MS is an auto-immune disease. No matter the type. And therefore, my belief is that HSCT is a feasible treatment for all types of MS since they are all auto-immune diseases, and here's my basic analogy: If I have a disease due to my liver secreting stuff that attacks my intestines (I have no idea, nor do I care if this is even possible - but it works for my analogy), I would guess that Doctors would opt for a procedure that goes after the problematic parts of my liver. Since my disease is due to my immune system attacking my central nervous system, I opted for a procedure (HSCT) that goes after the problematic parts of my immune system.
Different types of MS result in different damage to one's central nervous system (as stated above), therefore there will be different requirements for healing (re-myelination, and/or establishment of new nerve pathways since nerve cells are very slow to grow, and may not even grow at all) once the disease is halted. Healing occurs at different rates for different people, and healing may not occur at all, since it is very patient-specific.
I need a sandwich.
Saturday 27 December 2014
[DAY +46] This morning I awoke feeling a little bit lethargic. I was a bit put off by this until I spoke with Anne. Her comment was, "Well, how do you feel compared to before you went to Israel?". Good point. This week some days have been more energetic than others, but compared to all of my pre-HSCT days, my worst day this month is light years better than any day before my trip. I used to have to fight to stay awake all hours of the day. I dreaded even the most easy and insignificant everyday tasks (e.g. the 'long trip' to the bathroom) because doing the task was exhausting, and I just wanted to lay down. Yes, my legs remain very weak and stiff, but at least now I have the energy to do something about it.
This morning's exercises:
(1) Marching - 3 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(2) Standing on one foot (while holding onto chair), write numbers with other foot - 3 x 10 per leg
(3) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(4) Calf raises (on stairs) - 3 x 10 [legs shake during this exercise]
(5) Lunge - 3 x10 per leg
(6) Pushup (kneeling) - 2 x 10
This morning's exercises:
(1) Marching - 3 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(2) Standing on one foot (while holding onto chair), write numbers with other foot - 3 x 10 per leg
(3) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(4) Calf raises (on stairs) - 3 x 10 [legs shake during this exercise]
(5) Lunge - 3 x10 per leg
(6) Pushup (kneeling) - 2 x 10
Friday 26 December 2014
[DAY +45] The last two days were filled with family, friends, and eating. And some more eating. It was great. But two days of inactivity made my tight and weak legs feel tighter and weaker. So, this morning I exercised, and did an additional set of some exercises:
(1) Standing on one foot (while holding onto chair), write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(3) Lying on stomach, hamstring curl - 3 x 10 per leg [right leg is more difficult]
(4) Lying on side, bent legged adductor (crab exercise) - 3 x 10 per leg
(5) Lying on side, straight legged adductor (leg raise) - 3 x 10 per leg
(6) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(7) Seated on ball, shoulder press (no weights)- 2 x 10 [difficult for right shoulder]
(8) Seated on ball, lateral raise (no weights) - 2 x 10
(9) Seated on ball, row exercise using therapy bands - 2 x 10
(10) Lunge - 3 x10 per leg
(11) Pushup (kneeling) - 2 x 10
Exercise #3 is definitely the most difficult for my right leg. Its movements during that exercise are not very smooth, but that will improve when the leg gets stronger.
The remainder of the day will consist of stretching, resting, and eating. And some more eating.
--------------------
*Update*
Did two more exercises this evening:
(12) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(13) Calf raises (on stairs) - 3 x 10
(1) Standing on one foot (while holding onto chair), write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(3) Lying on stomach, hamstring curl - 3 x 10 per leg [right leg is more difficult]
(4) Lying on side, bent legged adductor (crab exercise) - 3 x 10 per leg
(5) Lying on side, straight legged adductor (leg raise) - 3 x 10 per leg
(6) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(7) Seated on ball, shoulder press (no weights)- 2 x 10 [difficult for right shoulder]
(8) Seated on ball, lateral raise (no weights) - 2 x 10
(9) Seated on ball, row exercise using therapy bands - 2 x 10
(10) Lunge - 3 x10 per leg
(11) Pushup (kneeling) - 2 x 10
Exercise #3 is definitely the most difficult for my right leg. Its movements during that exercise are not very smooth, but that will improve when the leg gets stronger.
The remainder of the day will consist of stretching, resting, and eating. And some more eating.
--------------------
*Update*
Did two more exercises this evening:
(12) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(13) Calf raises (on stairs) - 3 x 10
Tuesday 23 December 2014
[DAY +42] This morning I exercised:
(1) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(3) Lying on side bent legged adductor (crab exercise) - 2 x 10 per leg
(4) Lying on side straight legged adductor (leg raise) - 2 x 10 per leg
(5) Lying on stomach hamstring curl - 2 x 10 per leg [right leg is more difficult]
(6) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 2 x10
(7) Seated on ball, shoulder press (no weights)- 2 x 10 [difficult for right shoulder]
(8) Seated on ball, lateral raise (no weights) - 2 x 10
(9) Seated on ball, row exercise using therapy bands - 2 x 10
(10) Lunge - 2 x10 per leg
(11) Pushup (kneeling) - 2 x 10
Pleased that I was able to do that much exercise. We'll see how I feel tomorrow, but I think I will feel alright, and not overtired.
The rest of the day will involve eating, resting, and stretching.
(1) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(3) Lying on side bent legged adductor (crab exercise) - 2 x 10 per leg
(4) Lying on side straight legged adductor (leg raise) - 2 x 10 per leg
(5) Lying on stomach hamstring curl - 2 x 10 per leg [right leg is more difficult]
(6) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 2 x10
(7) Seated on ball, shoulder press (no weights)- 2 x 10 [difficult for right shoulder]
(8) Seated on ball, lateral raise (no weights) - 2 x 10
(9) Seated on ball, row exercise using therapy bands - 2 x 10
(10) Lunge - 2 x10 per leg
(11) Pushup (kneeling) - 2 x 10
Pleased that I was able to do that much exercise. We'll see how I feel tomorrow, but I think I will feel alright, and not overtired.
The rest of the day will involve eating, resting, and stretching.
Monday 22 December 2014
[DAY +41] Yesterday was a day filled with rest, stretching. and t.v. Today my physiotherapist came and I did many exercises. My right arm and leg are definitely weaker than my left side (MS effects), and all my muscles need improved flexibility. After I move back home, he said a good thing for me to do would be yoga - be it a class somewhere or a dvd at home - since it involves breathing, stretching, holding positions, and balance. He also recommended a stationary bike / pedal machine to provide strengthening and range of motion capability for my legs. I checked, and quality pedal machines go for <$200 on Amazon. Should be here in 2 weeks or less.
I am a member of a very informative FaceBook Forum about HSCT. Somebody asked about post-HSCT improvements. Although there is no guarantee of improvement for any MS patient who undergoes HSCT, one of the more knowledgeable people in the forum, George Goss (who had HSCT 5 years ago for his Secondary Progressive MS and is currently doing very well), had this piece of good information to share on the topic of post-HSCT improvement:
"The three biggest factors that are predictive of post-transplantation outcome probability are #1) Morphology (beneficial outcome skewed towards relapsing cases vs progressive MS at time of transplantation), #2) EDSS (beneficial outcome skewed toward people that are ambulatory with lower EDSS at time of transplantation) and #3) Longevity (beneficial outcome skewed toward those hat have a shorter duration between disease onset and transplantation). Additionally, symptomatic improvements do not typically materialize immediately following HSCT. Instead post-HSCT symptomatic improvements most often follow a temporal pattern that goes like this. . . . . People "notice" improvements at +12 months following HSCT, At +18 months the improvements become "obvious," and at +24 months the improvements become most "substantial." Dr. Burt describes this phenomenon in the first 45 seconds of the following video. . .https://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel.
Cerebellar (dys)function(s) are usually the first/most complete symptoms to improve.Cerebellar functions are most non-motor functions (does not include muscle control) and includes things such as temperature (in)tolerance, visual disturbances, dysphagia (swallowing), dysarthria (speech), ataxia/vertigo, parasthesia, etc."
Thanks, George.
My strength of voice, heat intolerance, and overall fatigue level have already shown improvement (based on the above, I think these are 'cerebellar functions'). Other symptoms, like leg muscle strength and spasticity affecting my ability to walk will need more time and effort in order to improve. At the time I underwent HSCT I had primary progressive MS, my EDSS score was 5.5 (0 - 10 scale), and I underwent the procedure 5 1/2 years after I was diagnosed.
We will see how much improvement I make. Working hard for improvements will be required.
I am a member of a very informative FaceBook Forum about HSCT. Somebody asked about post-HSCT improvements. Although there is no guarantee of improvement for any MS patient who undergoes HSCT, one of the more knowledgeable people in the forum, George Goss (who had HSCT 5 years ago for his Secondary Progressive MS and is currently doing very well), had this piece of good information to share on the topic of post-HSCT improvement:
"The three biggest factors that are predictive of post-transplantation outcome probability are #1) Morphology (beneficial outcome skewed towards relapsing cases vs progressive MS at time of transplantation), #2) EDSS (beneficial outcome skewed toward people that are ambulatory with lower EDSS at time of transplantation) and #3) Longevity (beneficial outcome skewed toward those hat have a shorter duration between disease onset and transplantation). Additionally, symptomatic improvements do not typically materialize immediately following HSCT. Instead post-HSCT symptomatic improvements most often follow a temporal pattern that goes like this. . . . . People "notice" improvements at +12 months following HSCT, At +18 months the improvements become "obvious," and at +24 months the improvements become most "substantial." Dr. Burt describes this phenomenon in the first 45 seconds of the following video. . .https://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel.
Cerebellar (dys)function(s) are usually the first/most complete symptoms to improve.Cerebellar functions are most non-motor functions (does not include muscle control) and includes things such as temperature (in)tolerance, visual disturbances, dysphagia (swallowing), dysarthria (speech), ataxia/vertigo, parasthesia, etc."
Thanks, George.
My strength of voice, heat intolerance, and overall fatigue level have already shown improvement (based on the above, I think these are 'cerebellar functions'). Other symptoms, like leg muscle strength and spasticity affecting my ability to walk will need more time and effort in order to improve. At the time I underwent HSCT I had primary progressive MS, my EDSS score was 5.5 (0 - 10 scale), and I underwent the procedure 5 1/2 years after I was diagnosed.
We will see how much improvement I make. Working hard for improvements will be required.
Saturday 20 December 2014
[DAY +39] Started the day with some loops walked in the house followed by exercise:
(1) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg
(3) Lying on side bent legged adductor (crab exercise) - 2 x 10 per leg
(4) Lying on side straight legged adductor (leg raise) - 2 x 10 per leg
(5) Lying on stomach hamstring curl - 2 x 10per leg
(6) Seated on ball, lateral raise (no weights) - 2 x 10
(7) Seated on ball, row exercise using therapy bands - 2 x 10
While walking, I noticed that my leg muscles were very tight. They loosened up a little bit by walking. More walking and stretching is required. Walking inside (since it's winter outside - not the best conditions for me and my Bambi-like walking ability) seems to be better for me than walking outside, because I do not use my walking stick inside and I can lean on a wall if I lose my balance. This allows me to walk more 'freely' and take longer strides without fear of falling onto concrete or into the path of an oncoming car. This loosens up my muscles some and is closer to the normal walking form. I guess winter does have one good thing about it.
----------------
Meds prescribed by my Hematologist, to supplement my immune system while it builds back up to full strength:
(1) Acyclovir (antiviral) 800mg - once daily
(2) Sulfatrim DS (antibacterial - combination of 2 antibiotics) 800/160mg - once daily on M/W/F
I can't say for certain, but based on the number of tablets and refills, I expect to be taking these meds for 9 months.
(1) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg
(3) Lying on side bent legged adductor (crab exercise) - 2 x 10 per leg
(4) Lying on side straight legged adductor (leg raise) - 2 x 10 per leg
(5) Lying on stomach hamstring curl - 2 x 10per leg
(6) Seated on ball, lateral raise (no weights) - 2 x 10
(7) Seated on ball, row exercise using therapy bands - 2 x 10
While walking, I noticed that my leg muscles were very tight. They loosened up a little bit by walking. More walking and stretching is required. Walking inside (since it's winter outside - not the best conditions for me and my Bambi-like walking ability) seems to be better for me than walking outside, because I do not use my walking stick inside and I can lean on a wall if I lose my balance. This allows me to walk more 'freely' and take longer strides without fear of falling onto concrete or into the path of an oncoming car. This loosens up my muscles some and is closer to the normal walking form. I guess winter does have one good thing about it.
----------------
Meds prescribed by my Hematologist, to supplement my immune system while it builds back up to full strength:
(1) Acyclovir (antiviral) 800mg - once daily
(2) Sulfatrim DS (antibacterial - combination of 2 antibiotics) 800/160mg - once daily on M/W/F
I can't say for certain, but based on the number of tablets and refills, I expect to be taking these meds for 9 months.
Friday 19 December 2014
[DAY +38] This morning I did physio exercises. Not as many as Wednesday, but it was still challenging, and I was tired afterwards.
Exercises:
(1) Lying on side bent legged adductor (crab exercise) - 4 x 5 per leg
(2) Lying on side straight legged adductor (leg raise) - 4 x 5 per leg
(3) Lying on stomach hamstring curl - 4 x 5 per leg
(4) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(5) Marching - 2 x 10 per leg
(6) Seated on ball, row exercise using therapy bands - 2 x 10
-------------------------
In the afternoon I saw a Haematologist. He said:
(1) Blood counts are good, and moving in the right direction. Do another blood test today before you leave, and do one next time you come here to see me in one month
(2) I will provide you with a new prescription for Acyclovir & Septrin. No need to take allergy (Telfast) & stomach protection (Losec) meds anymore, since you are not bothered by either. (I will pick up the meds tomorrow and record the doses here)
(3) Go ahead and start taking supplements
(4) Go home when you feel physically strong enough. If somebody in the house gets sick, just be smart, stay away and don't kiss them
Very nice man, I will see him again in a month.
Exercises:
(1) Lying on side bent legged adductor (crab exercise) - 4 x 5 per leg
(2) Lying on side straight legged adductor (leg raise) - 4 x 5 per leg
(3) Lying on stomach hamstring curl - 4 x 5 per leg
(4) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(5) Marching - 2 x 10 per leg
(6) Seated on ball, row exercise using therapy bands - 2 x 10
-------------------------
In the afternoon I saw a Haematologist. He said:
(1) Blood counts are good, and moving in the right direction. Do another blood test today before you leave, and do one next time you come here to see me in one month
(2) I will provide you with a new prescription for Acyclovir & Septrin. No need to take allergy (Telfast) & stomach protection (Losec) meds anymore, since you are not bothered by either. (I will pick up the meds tomorrow and record the doses here)
(3) Go ahead and start taking supplements
(4) Go home when you feel physically strong enough. If somebody in the house gets sick, just be smart, stay away and don't kiss them
Very nice man, I will see him again in a month.
Thursday 18 December 2014
[DAY +37] Today my muscles were sore, but I woke up wanting more. (It felt great to have sore muscles from exercise - it has been a long time.) I pushed myself just right yesterday. I guessed that if I pushed myself physically today, it probably would not be beneficial at all. So I did what I am best at: eat and rest.
Tomorrow I will get back on the horse, but slowly. I will do a few exercises, and see where that takes me. And tomorrow I will see a Hematologist. Things I will ask :
(1) Need prescriptions for the anti-viral, anti-fungal, stomach protection, and allergy pills I am taking
(2) Is it ok if I start taking Vitamin D, Omega-3, and EPO supplements starting immediately?
(3) Any additional blood testing required? Opinion of previous blood test results?
(4) When is the best time for me to move back home to Oshawa? Precautions I should take if anybody in the house gets sick?
Tomorrow I will get back on the horse, but slowly. I will do a few exercises, and see where that takes me. And tomorrow I will see a Hematologist. Things I will ask :
(1) Need prescriptions for the anti-viral, anti-fungal, stomach protection, and allergy pills I am taking
(2) Is it ok if I start taking Vitamin D, Omega-3, and EPO supplements starting immediately?
(3) Any additional blood testing required? Opinion of previous blood test results?
(4) When is the best time for me to move back home to Oshawa? Precautions I should take if anybody in the house gets sick?
Wednesday 17 December 2014
[DAY +35, +36] Yesterday I got back to walking on the street and doing lunges. One of the reasons for that was that I thought doing so would make the following come true, "I will hit the ground running during physio tomorrow!". Nope. Not even close. After physio today I am lucky I didn't hit the ground with my face. I was exhausted. My legs were shaking. Did I push myself too far? Not enough? Just right? My gut feel is that I pushed myself just right, because today was my first physio session, and I haven't done anything exercise related for a few years. I should be worn out from it. We will find out for sure tomorrow. If I can't move, then it was probably too much.
------------------
Yesterday's exercise:
(1) walked to street corner and back
(2) 7 x 10 lunges
Today's exercise:
(1)Various physio exercises
-----------------
Saw my Doctor today. My blood counts (some of them: white blood cells = 4.0, haemoglobin = 12.7) are still low, but they are moving in the right direction. I am pleased with that. My next blood test is in 2 weeks (unless Hematologist wants something sooner), and I am hopeful it will produce more positive results. I have my initial appointment with a Hematologist on Friday. We will see how that goes.
Monday 15 December 2014
[DAY +33, +34] Yesterday was another day of rest and stretching for me. The rest did my muscles good, perfect timing for me first physio session today.
My physio person came to the house this morning. I did a balance test (Berg Balance Scale), we talked about the physical issues I am looking to improve, and at the end we discussed my plan going forward. My balance is decent - test score indicates I do not need walking assistance - but there is room for improvement, and there will be improvement. He will come on Monday and Wednesday to help me complete the balance exercises correctly. Also, he will email me an exercise, strengthening, and stretching plan that I can complete myself, as often as I can without hurting myself. I will purchase a stability ball and some light weights since I will need them for my exercise program.
Based on my balance test results, I am starting from a good spot - my balance is good enough currently that improvement is likely. As long as I work hard. One of the most difficult parts of the test for me was standing with one foot directly in front of the other - toes of one foot touching the heels of the other - for 30 seconds. The most I could do was 5 seconds.
----------------------
I did a comprehensive blood test this morning. Should get the results later in the week. Or, I may not get any results at all, since my doctor said, "If you don't here from me, then everything is as expected.".
My physio person came to the house this morning. I did a balance test (Berg Balance Scale), we talked about the physical issues I am looking to improve, and at the end we discussed my plan going forward. My balance is decent - test score indicates I do not need walking assistance - but there is room for improvement, and there will be improvement. He will come on Monday and Wednesday to help me complete the balance exercises correctly. Also, he will email me an exercise, strengthening, and stretching plan that I can complete myself, as often as I can without hurting myself. I will purchase a stability ball and some light weights since I will need them for my exercise program.
Based on my balance test results, I am starting from a good spot - my balance is good enough currently that improvement is likely. As long as I work hard. One of the most difficult parts of the test for me was standing with one foot directly in front of the other - toes of one foot touching the heels of the other - for 30 seconds. The most I could do was 5 seconds.
----------------------
I did a comprehensive blood test this morning. Should get the results later in the week. Or, I may not get any results at all, since my doctor said, "If you don't here from me, then everything is as expected.".
Saturday 13 December 2014
[DAY +32] Today my body gave me a giant middle finger, which I interpreted as it telling me "slow down, take it easy, I'm tired.". My leg muscles were tired, almost ached, and I could feel it. So today, I rested. I have decided that I will do less total exercise tomorrow, but do it more intensely, more slowly. We'll see how that goes.
Other than that, I am still feeling pretty good. I am eating what I want, when I want, and loving it. I am not overly tired. My muscles do tire quickly and I am still fairly weak - both effects of HSCT according to Dr Nadir.
Other than that, I am still feeling pretty good. I am eating what I want, when I want, and loving it. I am not overly tired. My muscles do tire quickly and I am still fairly weak - both effects of HSCT according to Dr Nadir.
Friday 12 December 2014
[DAY +31] The last words from Anne this morning were "Buy a LottoMax ticket, the jackpot is big.". Actually those are the words from a previous conversation we had. Today's last words were "Push yourself.". Good idea. So I did.
---------------
Today's exercise:
(1) Marching 3 x 8 each leg. Before I sit at the tablet eat a meal, I 'march' behind the chair - alternately lifting each leg as high as I can. Lifting my left leg causes my right leg to 'lock out', because it is weak and has difficulty supporting my weight, but it will get stronger.
(2) 8 x 10 lunges per leg (4 in a.m., 4 in p.m)
(3) 6 x 7 pushups (knees on the ground) (3 in a.m., 3 in p.m.)
---------------
Today's exercise:
(1) Marching 3 x 8 each leg. Before I sit at the tablet eat a meal, I 'march' behind the chair - alternately lifting each leg as high as I can. Lifting my left leg causes my right leg to 'lock out', because it is weak and has difficulty supporting my weight, but it will get stronger.
(2) 8 x 10 lunges per leg (4 in a.m., 4 in p.m)
(3) 6 x 7 pushups (knees on the ground) (3 in a.m., 3 in p.m.)
Thursday 11 December 2014
[DAY +30] One month ago (Nov 11) was my Day 0. A big thank you to all those who have helped me get to where am today - there are hundreds. It is almost unbelievable that HSCT is already 1 month in the past.
Another immediate improvement which I forgot to mention is my strength of voice and speaking ability. Before HSCT, after a few minutes of talking to somebody, my ability to speak would go downhill fast. At this point, a lot of effort was required to speak, so in my mind I was cheering for the conversation to end so that I could rest. My voice would become soft, slow, weak, and sometimes I would start to slur words. I likened it to speaking like a drunk. I would attempt to make my sentences as short as possible, because I knew that the more words I spoke, the more difficult it was going to be. I am happy to say that this is not a problem for me anymore. My voice just feels stronger, and I definitely have more 'speaking endurance'. So if we are talking in the future, and I rudely cut the conversation short, you can be confident that it is because I am being an ass, and has nothing to do with my health.
----------------------
Today's exercise:
(1) 6 x 10 lunges (3 in a.m, 3 in p.m.)
(2) 6 x 5 pushups (knees on ground)
It snowed a lot today, so I decided that it would be best if I didn't walk outside. Yet.
Another immediate improvement which I forgot to mention is my strength of voice and speaking ability. Before HSCT, after a few minutes of talking to somebody, my ability to speak would go downhill fast. At this point, a lot of effort was required to speak, so in my mind I was cheering for the conversation to end so that I could rest. My voice would become soft, slow, weak, and sometimes I would start to slur words. I likened it to speaking like a drunk. I would attempt to make my sentences as short as possible, because I knew that the more words I spoke, the more difficult it was going to be. I am happy to say that this is not a problem for me anymore. My voice just feels stronger, and I definitely have more 'speaking endurance'. So if we are talking in the future, and I rudely cut the conversation short, you can be confident that it is because I am being an ass, and has nothing to do with my health.
----------------------
Today's exercise:
(1) 6 x 10 lunges (3 in a.m, 3 in p.m.)
(2) 6 x 5 pushups (knees on ground)
It snowed a lot today, so I decided that it would be best if I didn't walk outside. Yet.
Wednesday 10 December 2014
[DAY +29] Today I did a little bit more exercise then yesterday. I also went for a walk outside - boy was it cold - that made me yearn for the t-shirt weather of Tel Aviv. I continue to eat like a glutton, and am enjoying every minute of it.
Anne's friend Laura took the time to prepare me a personalized physiotherapy program. Thanks Laura! It was tough.
Today's exercise:
(1) Did a portion of Laura's physio program
(2) Walked to the street corner and back
(3) 6 x 10 lunges per leg (3 in a.m., 3 in p.m.)
(4) 6 x 5 pushups (knees on the ground)
Anne's friend Laura took the time to prepare me a personalized physiotherapy program. Thanks Laura! It was tough.
Today's exercise:
(1) Did a portion of Laura's physio program
(2) Walked to the street corner and back
(3) 6 x 10 lunges per leg (3 in a.m., 3 in p.m.)
(4) 6 x 5 pushups (knees on the ground)
Tuesday 9 December 2014
[DAY +28] Sadly for me, all the pomegranate seeds are gone. I have eaten them all, all 12 large pomegranates, and they were delicious!
I have been asked more than once if undergoing HSCT for my MS was worth it. It's very soon after HSCT, but I can already say that yes, it was definitely worth it. Here's why:
(1) My fatigue level is reduced. By a lot. Especially during/after eating.
(2) After the procedure I walked/exercised outside in the warm Tel Aviv air. I used to melt like butter in warm temperatures - I would be begging for the nearest air conditioned room with a couch. Exercise, or any activity that caused my body to heat up, made things worse.
(3) My legs used to be a real nuisance. I like to say they were very "loud". It felt like they were on fire, and it was very uncomfortable. That is not the case anymore. There is still some discomfort, but there is much less. I am sure the majority of my remaining leg issues are a result of the damage done to the myelin on my spinal cord due to MS. This damage may or may not be repaired, but with me having completed HSCT, it is unlikely to get worse.
(4) I am able to lift my feet up each stair as I walk up. That used to be very difficult, almost impossible - there was a lot of dragging and stumbling. I walk up the stairs very slowly, but the ability to do so properly is priceless.
My legs are definitely weak, and I will not be entering a walking contest anytime soon, but I knew going into this that there would be a lot of work/ physical therapy required after HSCT. The only regret I have is that I did not undergo HSCT sooner. But I am still very happy I that was able to get it done - regardless of timing.
The next year is likely to be full of ups and down when it comes to me and my ability. But that is okay with me, and it is way better than just downs.
--------------------
Today's Exercise:
(1) Walked to street corner and back. Then walked a few houses in the other direction (all with walking stick).
(2) 4 x 10 lunges (each leg)
(3) 4 x 5 pushups (knees on ground)
I have been asked more than once if undergoing HSCT for my MS was worth it. It's very soon after HSCT, but I can already say that yes, it was definitely worth it. Here's why:
(1) My fatigue level is reduced. By a lot. Especially during/after eating.
(2) After the procedure I walked/exercised outside in the warm Tel Aviv air. I used to melt like butter in warm temperatures - I would be begging for the nearest air conditioned room with a couch. Exercise, or any activity that caused my body to heat up, made things worse.
(3) My legs used to be a real nuisance. I like to say they were very "loud". It felt like they were on fire, and it was very uncomfortable. That is not the case anymore. There is still some discomfort, but there is much less. I am sure the majority of my remaining leg issues are a result of the damage done to the myelin on my spinal cord due to MS. This damage may or may not be repaired, but with me having completed HSCT, it is unlikely to get worse.
(4) I am able to lift my feet up each stair as I walk up. That used to be very difficult, almost impossible - there was a lot of dragging and stumbling. I walk up the stairs very slowly, but the ability to do so properly is priceless.
My legs are definitely weak, and I will not be entering a walking contest anytime soon, but I knew going into this that there would be a lot of work/ physical therapy required after HSCT. The only regret I have is that I did not undergo HSCT sooner. But I am still very happy I that was able to get it done - regardless of timing.
The next year is likely to be full of ups and down when it comes to me and my ability. But that is okay with me, and it is way better than just downs.
--------------------
Today's Exercise:
(1) Walked to street corner and back. Then walked a few houses in the other direction (all with walking stick).
(2) 4 x 10 lunges (each leg)
(3) 4 x 5 pushups (knees on ground)
Monday 8 December 2014
[DAY+27] The usual EER today - Eat, Exercise, Rest. I got outside and walked to the street corner and back today with my cane (hiking 'stick'). I lifted my feet most of the way, some dragging occurred right as I finished. I will chalk that up to fatigue. It will get better.
I continue to eat like a king. Will weigh myself in the coming days.
Today's exercise:
(1) 4 x 10 lunges (per leg)
(2) 4 x 5 pushups (knees on ground)
(3) Walked to street corner and back
I continue to eat like a king. Will weigh myself in the coming days.
Today's exercise:
(1) 4 x 10 lunges (per leg)
(2) 4 x 5 pushups (knees on ground)
(3) Walked to street corner and back
Sunday 7 December 2014
[DAY +26] Another day of eating, resting, and some exercise. Anne suggested I add an upper body exercise to the mix, since my exercise focus thus far has been solely lower body. I had second thoughts about doing this, thinking my upper body had escaped any weakness effects from HSCT, so it was plenty strong. I was wrong, Anne was right. Those pushups were very difficult, so I will keep doing them.
Exercise today:
(1) Walked 4 loops inside the house (1 loop = front-to-back-to-front)
(2) 4 x 10 lunges (each leg)
(3) 2 x 5 pushups (with knees on the ground)
Exercise today:
(1) Walked 4 loops inside the house (1 loop = front-to-back-to-front)
(2) 4 x 10 lunges (each leg)
(3) 2 x 5 pushups (with knees on the ground)
Saturday 6 December 2014
[DAY +25] Today was filled with eating, resting, and a little bit of exercise. I couldn't find a good spot to do wall squats, so I did lunges instead. They are much more difficult for me than wall squats, so I will continue to do them.
A couple of positive things I have noticed:
(1) Eating used make me very tired. So much so, that I stopped eating big meals and hot items like soup. That is not the case anymore.
(2) Lying flat on my back and lifting my legs up one at a time used to be impossible. Not anymore.
(3) I am awake in the evenings, and effort to stay awake is not required.
It's early, but these are very promising things.
-----------------
Today's exercise:
(1) 4 x 10 lunges - each leg (2 in a.m., 2 in p.m.)
A couple of positive things I have noticed:
(1) Eating used make me very tired. So much so, that I stopped eating big meals and hot items like soup. That is not the case anymore.
(2) Lying flat on my back and lifting my legs up one at a time used to be impossible. Not anymore.
(3) I am awake in the evenings, and effort to stay awake is not required.
It's early, but these are very promising things.
-----------------
Today's exercise:
(1) 4 x 10 lunges - each leg (2 in a.m., 2 in p.m.)
Friday 5 December 2014
[DAY+24] My first full day home started at my Doctor's office. He read my CTCI discharge letter and blood test info, I gave him the contact info for the Hematologist referral, and before I left he told me that for any fever 38.0C or above, I must immediately report to an urgent care centre or hospital. I also asked his thoughts about me living back at home with Anne, Elaina, & Aly by late January / early February. He said by that time my immune system will be stronger, and cold/flu season will be winding down, and therefore doing so would be fine. Great stuff.
Next, Dad and I went to my house where Anne and Baba left lots of treasures in the garage (pomegranates, lasagne, groceries, clothes, and plenty more). We could not go inside because Aly is sick with a throat infection, but we got to see them through the upstairs window. The stunned looked on Aly's face was priceless. I felt a bit sad not to be able to go inside and see her in person, but just seeing Aly's face and waving hand through the window made me very happy, and easily crushed any feelings of sadness.
Then we came back here to Dad's place and I ate like it was my last meal ever. And then I slept. And then I ate again.
Next, Dad and I went to my house where Anne and Baba left lots of treasures in the garage (pomegranates, lasagne, groceries, clothes, and plenty more). We could not go inside because Aly is sick with a throat infection, but we got to see them through the upstairs window. The stunned looked on Aly's face was priceless. I felt a bit sad not to be able to go inside and see her in person, but just seeing Aly's face and waving hand through the window made me very happy, and easily crushed any feelings of sadness.
Then we came back here to Dad's place and I ate like it was my last meal ever. And then I slept. And then I ate again.
Thursday 4 December 2014
[DAY +23] Made it back to Toronto. Not as warm here as Tel Aviv, but I am very glad to be back. Tomorrow I will see my family physician, have him refer me to a specialist for follow-up care, and get back to doing exercise. I will be staying at my Dad's in Toronto for a little bit, until I am strong enough to go home and not be a burden. When I see the specialist, I will ask his opinion on how best to protect myself from getting sick when Elaina or Aly or Anne get sick, and what I should do if I get sick.
------------
Just finished a bowl of iced cream. Every bit as delicious as I thought it would be.
------------
Just finished a bowl of iced cream. Every bit as delicious as I thought it would be.
Wednesday 3 December 2014
[DAY +22] I cannot say enough good things about the quality of care I received while I was here. Thank you Nurses Samira, Ashraf, Hussein, Ibrahim, Sami, Mohammed; Dr Nadir, Prof Slavin, and anybody else on the CTCI medical team that I may have forgotten. And thank you Ruth Grunbaum, CTCI's patient co-ordinator, who answered all the questions I had before coming here, and completed all the necessary paperwork to get me here. And, of course, thank you to my personal caregivers Dad & Diana - they are the unsung heroes of this trip. I cannot emphasize enough that when you undergo HSCT treatment here, a personal caregiver is very necessary.
-------------------
I received one last Neupogen shot today to boost my white blood cell count (1) for the flight home and (2) to help protect against any environmental hazards that are prevalent in Toronto, but not in Tel Aviv. Total Neupogen shots I received is 7. As recommended by Dr Nadir, I will wear mask on the flight home.
The duration of my stay here is Israel was exactly 5 weeks.
-------------------
Awaiting me at home are the delicious seeds of 12 pomegranates - 3 hours of manual labour. Thanks Baba!
-------------------
I received one last Neupogen shot today to boost my white blood cell count (1) for the flight home and (2) to help protect against any environmental hazards that are prevalent in Toronto, but not in Tel Aviv. Total Neupogen shots I received is 7. As recommended by Dr Nadir, I will wear mask on the flight home.
The duration of my stay here is Israel was exactly 5 weeks.
-------------------
Awaiting me at home are the delicious seeds of 12 pomegranates - 3 hours of manual labour. Thanks Baba!
Tuesday 2 December 2014
[DAY +21] "I do not have any concerns. You are free to go.", said Dr Nadir today. It was nice to hear those words. When I saw Prof Slavin, I thanked him, then he smiled and replied, "We are just doing our job.".
The next direct flight from Tel Aviv to Toronto is Thursday, December 4th. Dad has called Air Canada, and has made the necessary changes, and we are now booked on that flight. Tomorrow, we will go up to the clinic to get a supply of meds, some paperwork, and say thank you & goodbye to whoever is there.
Upon my return to Canada, follow up care by a Doctor who is comfortable and knowledgeable in dealing with bone marrow transplant patients is very important. My neurologist at the St.Michael's Hospital MS clinic also stressed this point when I saw him this past September. I will make sure this happens.
-----------------
i have read a lot about HSCT recently. My understanding is that i will feel good and bad for the next year (it will be a roller coaster). After one year, my immune system should be at, or very near, full strength. Also after one year, the good/bad roller coaster will likely switch to only good, and upward I will go. This upward trend will likely include some symptomatic improvements. But without regular exercise / physiotherapy, all bets are off. And, of course, as somebody once said, "In medicine, there are no guarantees, only probabilities.".
------------------
*Update*
Today's exercise:
9 loops walked outside (5 in a.m., 4 in p.m.)
6 x 10 wall squats (3 in a.m., 3 in p.m.)
------------------
It's that time of year:
Aly's comment after taking the picture, "I like Santa.".
The next direct flight from Tel Aviv to Toronto is Thursday, December 4th. Dad has called Air Canada, and has made the necessary changes, and we are now booked on that flight. Tomorrow, we will go up to the clinic to get a supply of meds, some paperwork, and say thank you & goodbye to whoever is there.
Upon my return to Canada, follow up care by a Doctor who is comfortable and knowledgeable in dealing with bone marrow transplant patients is very important. My neurologist at the St.Michael's Hospital MS clinic also stressed this point when I saw him this past September. I will make sure this happens.
-----------------
i have read a lot about HSCT recently. My understanding is that i will feel good and bad for the next year (it will be a roller coaster). After one year, my immune system should be at, or very near, full strength. Also after one year, the good/bad roller coaster will likely switch to only good, and upward I will go. This upward trend will likely include some symptomatic improvements. But without regular exercise / physiotherapy, all bets are off. And, of course, as somebody once said, "In medicine, there are no guarantees, only probabilities.".
------------------
*Update*
Today's exercise:
9 loops walked outside (5 in a.m., 4 in p.m.)
6 x 10 wall squats (3 in a.m., 3 in p.m.)
------------------
It's that time of year:
Aly's comment after taking the picture, "I like Santa.".
Monday 1 December 2014
[DAY +20] Legs are a bit tired today from the exercise, but that is a good thing, and very necessary. Other than that, I am feeling alright. Must be the weather. It's 22C (72F) and sunny outside today. Hard to believe it's December 1st when I can walk outside in a t-shirt and be very comfortable. Tomorrow's forecast: 26C (79F) and sunny. I have had nothing but positive experiences here, but when I get the green light to go home, the only thing I am going to miss about Israel is the weather. It has been glorious throughout my stay.
------------------
Morning exercise complete:
(1) 5 loops walked outside
(2) 3 x 10 wall squats
-------------------
Evening exercise:
(1) 4 loops walked outside
(2) 3 x 10 wall squats
------------------
Elaina & Aly went to the movies yesterday with some friends:
------------------
Morning exercise complete:
(1) 5 loops walked outside
(2) 3 x 10 wall squats
-------------------
Evening exercise:
(1) 4 loops walked outside
(2) 3 x 10 wall squats
------------------
Elaina & Aly went to the movies yesterday with some friends:
Sunday 30 November 2014
[DAY +19] "Difficult, but not impossible.". That is how somebody who underwent HSCT to treat their MS described the HSCT treatment process. I think it is a very accurate description. When I think about the difficulties that MS has already saddled my family and I with, and the uncertainty of what the disease may do next, the decision to undergo this treatment was an easy one. Made easier by the fact that my family was on board with it, and very supportive. And now I am very glad that HSCT is in my rearview mirror, and what's left is for me to be disciplined, exercise, and eat.
------------------
Today's blood test results were "good". Will do another one on Tuesday, with the hope that the results are also good.
-------------------
*Update*
Exercise for today:
(1) 8 loops walked (4 in the a.m., 4 in the p.m.)
(2) 6x10 wall squats (3 in the a.m., 3 in the p.m.)
-------------------
We have moved into a 2 bedroom suite. Here is the view (the water is just barely visible on the horizon):
------------------
Today's blood test results were "good". Will do another one on Tuesday, with the hope that the results are also good.
-------------------
*Update*
Exercise for today:
(1) 8 loops walked (4 in the a.m., 4 in the p.m.)
(2) 6x10 wall squats (3 in the a.m., 3 in the p.m.)
-------------------
We have moved into a 2 bedroom suite. Here is the view (the water is just barely visible on the horizon):
Saturday 29 November 2014
[DAY +18] All quiet here today. It is Shabbat here, so there are very few people around. And there is no need for me to go to the clinic and check in with Dr Nadir, so we decided to go outside and I would walk some. It was very refreshing to be outside. i walked 4 loops - 2 with an empty chair, and 2 with somebody in the chair. The lucky person who got to ride in the chair? None other than Dr Nadir, who we ran into outside. Here's proof:
We chatted with Dr Nadir afterwards, and he reiterated the importance of me exercising with the goal of maintaining and even building muscle mass. The transplant, he says, is guaranteed to make me weaker and reduce my muscle mass. It is up to me to be disciplined and exercise. Or I will suffer the consequences.
----------------------
*Update*
This afternoon's exercise:
(1) Walked another 4 loops outside. This time it was Dad's turn to sit in the chair. Somebody in the chair for me to push provides stability and requires more involvement from my leg muscles. Both good things.
(2) 3x10 wall squats
We chatted with Dr Nadir afterwards, and he reiterated the importance of me exercising with the goal of maintaining and even building muscle mass. The transplant, he says, is guaranteed to make me weaker and reduce my muscle mass. It is up to me to be disciplined and exercise. Or I will suffer the consequences.
----------------------
*Update*
This afternoon's exercise:
(1) Walked another 4 loops outside. This time it was Dad's turn to sit in the chair. Somebody in the chair for me to push provides stability and requires more involvement from my leg muscles. Both good things.
(2) 3x10 wall squats
Friday 28 November 2014
[DAY +17] Met with Dr Nadir today at the CTCI clinic. He reviewed all my discharge paperwork from Hadassah hospital. I will do a blood test Sunday morning. If all my blood counts remain stable for the next week, and I do not get sick, then my target departure from Tel Aviv is December 6. A lot can change between now and then which may alter that date, but at least there is a target date to aim for. He also advised me to move around as much as possible, and that I do not require a mask when outside.
---------------
*Update*
(1) Walked 1 loop of 13th (short), and 2 loops of 4th floor
(2) Did 3x10 wall squats
----------------
Here is a nice picture of Elaina & Aly. Maybe their best together:
---------------
*Update*
(1) Walked 1 loop of 13th (short), and 2 loops of 4th floor
(2) Did 3x10 wall squats
----------------
Here is a nice picture of Elaina & Aly. Maybe their best together:
Thursday 27 November 2014
[DAY +16] Doctor says I am free to go once my IV antibiotics are complete. Nurse says that will be about 18:00. Great. Thank you Hadassah Hospital, I have been treated very well, and I feel a whole lot better now than when I got here.
-------------------
*Update*
(1)Walked 3 loops of the hospital wing this morning
(2) Now back in Tel Aviv
--------------------
Here is a picture of me today, typing this blog (that is my bed on my left - it is probably the worst thing about my stay here at the hospital):
-------------------
Happy Thanksgiving to all my American friends and family. I hope it's a great one!
-------------------
*Update*
(1)Walked 3 loops of the hospital wing this morning
(2) Now back in Tel Aviv
--------------------
Here is a picture of me today, typing this blog (that is my bed on my left - it is probably the worst thing about my stay here at the hospital):
-------------------
Happy Thanksgiving to all my American friends and family. I hope it's a great one!
Wednesday 26 November 2014
[DAY +15] All blood counts remain on the rise, so if everything remains like this, discharge from the hospital tomorrow evening (after my IV antibiotics course is complete) is what I will get. My white blood cell counts are high enough that I will not be getting a Neupogen shot today. I received 6 total.
--------------
*Update*
(1) Walked 6 loops (3 in the a.m., 3 in the p.m.) of the hospital wing
(2) Neckline rash (most bothersome) 90% gone; waistline rash 50% gone
-------------
When the nurses come in to draw blood, most comment "Nice veins, makes it really easy for us.". My initial response was "Thank you, just like the veins of a heroin addict.". One nurse quickly pointed out, "Drug addicts have terrible veins. I once had to summon a surgeon to help me try and find a vein to draw blood from.". Now, when the vein comment comes, I just say "Yes, happy to help.".
--------------
There are several nice looking churches visible from the hospital. Here is one of them:
--------------
*Update*
(1) Walked 6 loops (3 in the a.m., 3 in the p.m.) of the hospital wing
(2) Neckline rash (most bothersome) 90% gone; waistline rash 50% gone
-------------
When the nurses come in to draw blood, most comment "Nice veins, makes it really easy for us.". My initial response was "Thank you, just like the veins of a heroin addict.". One nurse quickly pointed out, "Drug addicts have terrible veins. I once had to summon a surgeon to help me try and find a vein to draw blood from.". Now, when the vein comment comes, I just say "Yes, happy to help.".
--------------
There are several nice looking churches visible from the hospital. Here is one of them:
Tuesday 25 November 2014
[DAY +14] Blood counts continue to rise. Doctor says this morning's test result showed my white blood cell count was 2.5. Today's strategy is to give me another Neupogen shot (white blood cell production booster) and see what tomorrow's results show. If all blood counts remain acceptable (continue to rise), and all else is good, then I will be discharged, and back to Tel Aviv (about 45 min drive) I will go.
----------------
*Update*
(1) Doctor just came in. When I got sick initially (in Tel Aviv before they sent me here), I had a blood test done. Those results have made there way here (via CTCI), and the reason for sickness was a bacterial infection in my blood. Doctors here are not concerned, but want me to stay 2 more days to complete a different, more relevant, IV anti-biotic course. Then, I will be discharged (Thursday).
(2) Neupogen shot received 12:30
(3) Walked 3 loops of the hospital wing. Focused on lifting my feet every step.
--------------------
My platelets, although rising, are not out of the danger zone yet. So, I do not want to shave, or even attempt to shorten my facial hair in any way - "Do not cut yourself", I have been told many times. I have found a way to shave with my bare hands only. Cave Men would be proud. My facial hair, when encouraged (e.g. rub my hands gently on it), will fall out. I have used this method to rid myself of some of my beard.
----------------
Here is the view from my hospital room in Jerusalem:
Here is the view of the Hadassah Hospital Bone Marrow Transplant wing:
----------------
*Update*
(1) Doctor just came in. When I got sick initially (in Tel Aviv before they sent me here), I had a blood test done. Those results have made there way here (via CTCI), and the reason for sickness was a bacterial infection in my blood. Doctors here are not concerned, but want me to stay 2 more days to complete a different, more relevant, IV anti-biotic course. Then, I will be discharged (Thursday).
(2) Neupogen shot received 12:30
(3) Walked 3 loops of the hospital wing. Focused on lifting my feet every step.
--------------------
My platelets, although rising, are not out of the danger zone yet. So, I do not want to shave, or even attempt to shorten my facial hair in any way - "Do not cut yourself", I have been told many times. I have found a way to shave with my bare hands only. Cave Men would be proud. My facial hair, when encouraged (e.g. rub my hands gently on it), will fall out. I have used this method to rid myself of some of my beard.
----------------
Here is the view from my hospital room in Jerusalem:
Here is the view of the Hadassah Hospital Bone Marrow Transplant wing:
Monday 24 November 2014
[DAY +13] A whole team of Doctors came to see me today (typical for Monday - I'm told). And they came bearing the news I wanted to hear: all my blood 'counts' are on the rise - all indications point to engraftment being underway. Specifically, they told me that my white blood cell count is 0.6 (was 0, 0.1 previous couple days). They said they need to see that number above 1.0 before I can be discharged. If all goes well, that will be in the next day or two. We will see.
----------------
Pretty typical day here yesterday. For anybody who ends up here in the future, the basic highlights of what happens each day are:
06:00 : Blood taken for testing by night Nurse
07:30 - 08:30 : Breakfast arrives, day Nurse says hello and asks a few questions, room is cleaned (extremely thoroughly)
11:00 - 12:00 : Doctor on rounds says hello, asks a few questions, and we talk about blood test results
12:00 : Lunch arrives
12:30 : Day nurse arrives with Neupogen shot
16:00 : Afternoon Nurse says hello and asks a few questions
17:00 : Dinner arrives
23:30 : Night Nurse says hello and asks a few questions if I am awake, otherwise they'll just go about their business.
Nurses come in and out the room several times a day to check your temperature, blood pressure, and pulse. They also come in to re-up your IV fluids and/or antibiotics, and give you pills, as required. You are also weighed daily.
The first 2 days here I received one platelet infusion each day. I have not had one since.
------------------
*Update*
(1) Neupogen shot received around midday
(2) Walked (2 loops) of the hospital (bone marrow transplant wing)
-----------------
The first few days after the transplant i didn't lose any weight. I wasn't eating much, but i was being given lots of IV fluid which was being retained in my lower legs and feet. I could barely put my socks (we cut them at the top to make it possible) and shoes on. Tying shoelaces up was not possible. I have started to eat again - I have a good appetite - and the swelling in my lower legs / feet is gone, even though the IV fluids are not. My point here is that my daily weigh-in indicates I have lost around 15 pounds since before the transplant. This is typical. Can't wait to indulge in the recommended high-calorie post-transplant foods when I get home. Haagen-Dazs Vanilla Swiss Almond, be ready!
-------------------
Here is another HSCT for MS success video. The walker / patient, Brooke, says that every day post-HSCT is not roses, but the majority are. And before the transplant, there were no roses at all, and every day was crap. Congratulations Brooke. Keep working hard.
https://www.youtube.com/watch?v=qDX9jq5D8_8
----------------
Pretty typical day here yesterday. For anybody who ends up here in the future, the basic highlights of what happens each day are:
06:00 : Blood taken for testing by night Nurse
07:30 - 08:30 : Breakfast arrives, day Nurse says hello and asks a few questions, room is cleaned (extremely thoroughly)
11:00 - 12:00 : Doctor on rounds says hello, asks a few questions, and we talk about blood test results
12:00 : Lunch arrives
12:30 : Day nurse arrives with Neupogen shot
16:00 : Afternoon Nurse says hello and asks a few questions
17:00 : Dinner arrives
23:30 : Night Nurse says hello and asks a few questions if I am awake, otherwise they'll just go about their business.
Nurses come in and out the room several times a day to check your temperature, blood pressure, and pulse. They also come in to re-up your IV fluids and/or antibiotics, and give you pills, as required. You are also weighed daily.
The first 2 days here I received one platelet infusion each day. I have not had one since.
------------------
*Update*
(1) Neupogen shot received around midday
(2) Walked (2 loops) of the hospital (bone marrow transplant wing)
-----------------
The first few days after the transplant i didn't lose any weight. I wasn't eating much, but i was being given lots of IV fluid which was being retained in my lower legs and feet. I could barely put my socks (we cut them at the top to make it possible) and shoes on. Tying shoelaces up was not possible. I have started to eat again - I have a good appetite - and the swelling in my lower legs / feet is gone, even though the IV fluids are not. My point here is that my daily weigh-in indicates I have lost around 15 pounds since before the transplant. This is typical. Can't wait to indulge in the recommended high-calorie post-transplant foods when I get home. Haagen-Dazs Vanilla Swiss Almond, be ready!
-------------------
Here is another HSCT for MS success video. The walker / patient, Brooke, says that every day post-HSCT is not roses, but the majority are. And before the transplant, there were no roses at all, and every day was crap. Congratulations Brooke. Keep working hard.
https://www.youtube.com/watch?v=qDX9jq5D8_8
Sunday 23 November 2014
[DAY +12] Had a fever yesterday evening (peaked at 38.1C). Provided blood and urine cultures, was given IV fluids and antibiotics, a few pills, and the fever has subsided this morning. Don't know why the fever came, but that is not important to me. My temperature is normal now, and I feel better, so that's good.
Last night, my hair was a nuisance. It felt like straw was poking my head every time I moved my head on the pillow. And when I woke this morning, it was everywhere. That made me want to cut it off as soon as possible. The day nurse (David - originally from Connecticut) offered to do it, and he did a fine job. Thank you, David.
-----------------
*Update*
(1) Had my Neupogen shot today.
(2) Walked the hospital halls today (2 loops) before dinner. Difficult, but necessary.
-----------------
Had a chat with the Doctor on duty at the hospital today. The results from this morning's blood tests indicate that all my 'counts' are still very low, so engraftment has not started yet. They will not discharge me from the hospital until my blood 'counts' are at a safe level, which will happen when engraftment does. Engraftment could happen tomorrow, or it may happen in a week from tomorrow. We will see. In the meantime, I wait. Patiently.
Last night, my hair was a nuisance. It felt like straw was poking my head every time I moved my head on the pillow. And when I woke this morning, it was everywhere. That made me want to cut it off as soon as possible. The day nurse (David - originally from Connecticut) offered to do it, and he did a fine job. Thank you, David.
-----------------
*Update*
(1) Had my Neupogen shot today.
(2) Walked the hospital halls today (2 loops) before dinner. Difficult, but necessary.
-----------------
Had a chat with the Doctor on duty at the hospital today. The results from this morning's blood tests indicate that all my 'counts' are still very low, so engraftment has not started yet. They will not discharge me from the hospital until my blood 'counts' are at a safe level, which will happen when engraftment does. Engraftment could happen tomorrow, or it may happen in a week from tomorrow. We will see. In the meantime, I wait. Patiently.
Saturday 22 November 2014
[DAY +11] For the record, Neupogen shots make me tired, weak, and provide me with a headache. But I am pleased that I feel this way because of shots, and not because of MS or something else. More IV fluids and antibiotics are on the menu for today, and probably another Neupogen shot. We'll see how it all plays out.
As I was showering yesterday, I ran my hand through my hair to make sure all my hair got wet. I looked at my hand after doing that, and my palm was hairy. I let the water wash away the hair on my palm and did it again. More hair. I also donned a white t-shirt for the day yesterday. Every trip to the bathroom I had to dust off all my facial hair from the shirt. I think I can safely say that my hair is falling out now, a typical side effect of chemotherapy. I will probably wait until I get back to Tel Aviv for a proper buzz cut using my hair clippers because: (1) in case I cut myself in the process I won't bleed to death due to low platelets (should be recovered by then),and (2) not sure if my hair clipper has enough battery life remaining to do the job. Since today is Shabbat, all the stores are closed in the mall at the hospital complex, so the option of purchasing a voltage converter does not exist (we brought a few, but they are all in Tel Aviv). In the meantime, I will just have to live with shedding hair everywhere (bed, shower, clothes, etc.).
-------------------
*Update*
Exercise:
Walked the halls at the hospital twice yesterday - before lunch and before dinner.
-------------------
I was chatting with Anne yesterday, boasting about how pleased I am to be eating things I thought were off limits. The nurses here say "if the food comes from the hospital, eat whatever shows up. We know there are patients here who are at risk due to food bacteria, and we take responsibility for feeding them. Just don't eat anything from the mall or vendors.". No problem. Anyway, Anne asked a question about food and I gave a very abrupt response. She laughed and replied, "Well you must be feeling better because you're still able to be an asshole.". Yes, I am still able to be an asshole, thank goodness, but I am now an asshole in charge of my own destiny, not at the mercy of some disease.
As I was showering yesterday, I ran my hand through my hair to make sure all my hair got wet. I looked at my hand after doing that, and my palm was hairy. I let the water wash away the hair on my palm and did it again. More hair. I also donned a white t-shirt for the day yesterday. Every trip to the bathroom I had to dust off all my facial hair from the shirt. I think I can safely say that my hair is falling out now, a typical side effect of chemotherapy. I will probably wait until I get back to Tel Aviv for a proper buzz cut using my hair clippers because: (1) in case I cut myself in the process I won't bleed to death due to low platelets (should be recovered by then),and (2) not sure if my hair clipper has enough battery life remaining to do the job. Since today is Shabbat, all the stores are closed in the mall at the hospital complex, so the option of purchasing a voltage converter does not exist (we brought a few, but they are all in Tel Aviv). In the meantime, I will just have to live with shedding hair everywhere (bed, shower, clothes, etc.).
-------------------
*Update*
Exercise:
Walked the halls at the hospital twice yesterday - before lunch and before dinner.
-------------------
I was chatting with Anne yesterday, boasting about how pleased I am to be eating things I thought were off limits. The nurses here say "if the food comes from the hospital, eat whatever shows up. We know there are patients here who are at risk due to food bacteria, and we take responsibility for feeding them. Just don't eat anything from the mall or vendors.". No problem. Anyway, Anne asked a question about food and I gave a very abrupt response. She laughed and replied, "Well you must be feeling better because you're still able to be an asshole.". Yes, I am still able to be an asshole, thank goodness, but I am now an asshole in charge of my own destiny, not at the mercy of some disease.
Friday 21 November 2014
{DAY +10] And we have made it to double digits. Great stuff. Last night received a couple doses of IV antibiotics, and one helping of platelets. I will receive more IV antibiotics today, not sure about platelets, but I'll find out soon enough. I already feel much improved when compared to this time yesterday.
I have been assigned to an isolation room at the hospital. The room has 2 sets of doors, is 'positive pressure' so nothing blows into it from outside, and has a HEPA filter on the air coming in from the A/C.
*Update*: I received another platelet transfusion, and another Neupogen shot today.
-------------------
I do not want to scare off any future HSCT patients from coming to CTCI for HSCT, so let me explain my situation - why exactly I am here in a hospital in Jerusalem. At CTCI in Tel Aviv they have done many HSCT / bone marrow transplants. I have had nothing but positive experiences with the Doctors and Nurses there, and Prof Slavin is one of the pioneers of HSCT for autoimmune diseases. Saying that he is an expert may be understating things some. They know the risks of transplants, and make the patient aware of these risks. If complications arise, there are certain things that the medical staff at CTCI know must be done for the patient. If it is not possible to do this (or these) medical procedure(s) at CTCI, they will quickly send you to Hadassah hospital, where the medical procedures can be performed. In my case, Dr Nadir believed I would benefit from a platelet infusion, something which cannot be done at CTCI. I cannot say forsure, but I would guess (and it's very likely) Dr Nadir consulted with Prof Slavin before sending me to Jerusalem. Before I left CTCI, I did have a brief chat with Prof Slavin. So here I am, in isolation at Hadassah Hospital in Jerusalem.
------------------
The night nurse who worked last night is originally from Calgary. Small world.
I have been assigned to an isolation room at the hospital. The room has 2 sets of doors, is 'positive pressure' so nothing blows into it from outside, and has a HEPA filter on the air coming in from the A/C.
*Update*: I received another platelet transfusion, and another Neupogen shot today.
-------------------
I do not want to scare off any future HSCT patients from coming to CTCI for HSCT, so let me explain my situation - why exactly I am here in a hospital in Jerusalem. At CTCI in Tel Aviv they have done many HSCT / bone marrow transplants. I have had nothing but positive experiences with the Doctors and Nurses there, and Prof Slavin is one of the pioneers of HSCT for autoimmune diseases. Saying that he is an expert may be understating things some. They know the risks of transplants, and make the patient aware of these risks. If complications arise, there are certain things that the medical staff at CTCI know must be done for the patient. If it is not possible to do this (or these) medical procedure(s) at CTCI, they will quickly send you to Hadassah hospital, where the medical procedures can be performed. In my case, Dr Nadir believed I would benefit from a platelet infusion, something which cannot be done at CTCI. I cannot say forsure, but I would guess (and it's very likely) Dr Nadir consulted with Prof Slavin before sending me to Jerusalem. Before I left CTCI, I did have a brief chat with Prof Slavin. So here I am, in isolation at Hadassah Hospital in Jerusalem.
------------------
The night nurse who worked last night is originally from Calgary. Small world.
Thursday 20 November 2014
[DAY +9] Last night I was feeling very weak, had some chills, and by this morning I had a fever. So, this morning Nurse Hussein came to my room and lifted me out of my bed and into the wheelchair, and up we went to the clinic (I was so weak that there was no chance I could do that on my own). When I got there, I was transferred into a bed. Then I vomited everywhere. After that, and a change of pants and bedsheets, I kinda felt better, and my fever subsided. I did a blood test, took some IV antibiotics and fluids. Then my fever started to take off again. Dr Nadir got my my morning blood test results (all counts still very low). It was at that time that Dr Nadir decided it would be best for me to spend a few days at Hadasah University Hospital in Jerusalem. So here I am. Prof Slavin used to run the Bone Marrow Transplant Department here, so everybody here seems to know him. Some of the nurses here are British, so that makes communication easier too. It is likely I will be here for at least 4 days. We will see.
--------------
*Update*: Before I left CTCI, I received my first Neupogen shot. This helps stimulate white blood cell growth, which will help protect me until engraftment happens and my bone marrow can do its thing.
----------------
Right now is the best I've felt in 24 hours. Maybe all I needed was a change of scenery. I believe that they will not discharge me from the hospital until my blood counts are at normal levels again. Then, the worst of the transplant's effects on my body will be over, and only hard work will remain.
A lady from the USA, Vicki Wilson, with the same diagnosis (PPMS) and very similar disability (EDSS 6.0) as me, had this transplant done just over a year ago. She has often said that she works very hard physically, and that has lead to great results. Here is her great story:
https://www.youtube.com/watch?v=6FcMm8C_nZ8
--------------
*Update*: Before I left CTCI, I received my first Neupogen shot. This helps stimulate white blood cell growth, which will help protect me until engraftment happens and my bone marrow can do its thing.
----------------
Right now is the best I've felt in 24 hours. Maybe all I needed was a change of scenery. I believe that they will not discharge me from the hospital until my blood counts are at normal levels again. Then, the worst of the transplant's effects on my body will be over, and only hard work will remain.
A lady from the USA, Vicki Wilson, with the same diagnosis (PPMS) and very similar disability (EDSS 6.0) as me, had this transplant done just over a year ago. She has often said that she works very hard physically, and that has lead to great results. Here is her great story:
https://www.youtube.com/watch?v=6FcMm8C_nZ8
Wednesday 19 November 2014
[DAY +8] This morning's urine test revealed a little bit of blood; combine that with my waistline rash growing and the result is Dr Nadir ordered some IV fluids and steroids for me. Tomorrow at 08:30, I will provide blood for a test to see what my 'levels' are at. My other rash, neckline and above, is improving. Ashraf gave me something to 'clean' my growing waistline (and both thighs) rash when I am in the shower. That rash is growing, but it is not bothersome, so that's good. And when my new immune system comes to town. the rash is expected to leave town quickly.
-----------------
Exercise today:
2 loops around 4th floor
2 x 10 wall squats
Notes:
1. Very tired yesterday afternoon/night/today. Think it's a combination of low blood 'levels', being not in good overall physical shape, and pushing myself yesterday. So, I intentionally did less exercise today.
-----------------
I hear the weather at home is cold and very winter-like. And our friends in Buffalo got pummelled with over 5 feet of snow. No thank you. It is 25C/77F here, and not a cloud to be seen. Typical desert weather this time of year, I'm told. Here's a photo snapped today from the clinic:
-------------------
We watch a lot of CNN here since its newscast is in English. It is called 'CNN International', and there is a lot of coverage of Africa. One thing I have learned is that the President of Nigeria is named Goodluck Jonathan. I kid you not. CNN tells me that there are a lot of problems is Nigeria, but I believe that with Goodluck Johnathan in charge, there are brighter days ahead. Good luck, Goodluck Jonathan.
-----------------
Exercise today:
2 loops around 4th floor
2 x 10 wall squats
Notes:
1. Very tired yesterday afternoon/night/today. Think it's a combination of low blood 'levels', being not in good overall physical shape, and pushing myself yesterday. So, I intentionally did less exercise today.
-----------------
I hear the weather at home is cold and very winter-like. And our friends in Buffalo got pummelled with over 5 feet of snow. No thank you. It is 25C/77F here, and not a cloud to be seen. Typical desert weather this time of year, I'm told. Here's a photo snapped today from the clinic:
-------------------
We watch a lot of CNN here since its newscast is in English. It is called 'CNN International', and there is a lot of coverage of Africa. One thing I have learned is that the President of Nigeria is named Goodluck Jonathan. I kid you not. CNN tells me that there are a lot of problems is Nigeria, but I believe that with Goodluck Johnathan in charge, there are brighter days ahead. Good luck, Goodluck Jonathan.
Tuesday 18 November 2014
[DAY +7] This morning at the clinic Dr Nadir looked me over. He was concerned about my waistline rash, so he ordered intravenous steroids followed by fluids for me. Whatever it takes.
Ashraf says my blood test results indicate that I am near, or at, the bottom, aka 'the nadir' (huge irony, since my treating physician is Dr Nadir). Ashraf's quote to me, "Your immune system is zero.". My response, "Thanks for pushing me to the nadir.". He laughed. Now, we wait for engraftment. Timing of engraftment is different for everyone (totally body-specific), so it is even not worth a guess of when it will take place. We will wait and see what happens.
Was talking to Anne about 'the bottom', and the engraftment / climb up that follows. She said, "You mean like Drake says?". Yes, just like Drake says. This one is courtesy of Anne:
https://www.youtube.com/watch?v=RubBzkZzpUA
-----------------------
Last night's sleep was the best since Day 0. My trips to the bathroom numbered probably 5, (maybe because I got zero IV fluids yesterday?) and the result was longer periods of sound sleep. Good news.
-----------------------
Exercise today:
4 loops of the hotel floor
3 x 10 wall squats
Notes:
Make sure I lift my feet (right foot especially) when I walk, otherwise it is likely I will fall
----------------------
A nice Christmas photo of Elaina, Aly, and their pal Dahlia. In case you weren't sure, Aly marches to the beat of her own proverbial drum, and will pose/smile when she feels it's necessary. Or maybe she just prefers that candy cane over holding up a sign. Whatever the case, good on her, I say.
Ashraf says my blood test results indicate that I am near, or at, the bottom, aka 'the nadir' (huge irony, since my treating physician is Dr Nadir). Ashraf's quote to me, "Your immune system is zero.". My response, "Thanks for pushing me to the nadir.". He laughed. Now, we wait for engraftment. Timing of engraftment is different for everyone (totally body-specific), so it is even not worth a guess of when it will take place. We will wait and see what happens.
Was talking to Anne about 'the bottom', and the engraftment / climb up that follows. She said, "You mean like Drake says?". Yes, just like Drake says. This one is courtesy of Anne:
https://www.youtube.com/watch?v=RubBzkZzpUA
-----------------------
Last night's sleep was the best since Day 0. My trips to the bathroom numbered probably 5, (maybe because I got zero IV fluids yesterday?) and the result was longer periods of sound sleep. Good news.
-----------------------
Exercise today:
4 loops of the hotel floor
3 x 10 wall squats
Notes:
Make sure I lift my feet (right foot especially) when I walk, otherwise it is likely I will fall
----------------------
A nice Christmas photo of Elaina, Aly, and their pal Dahlia. In case you weren't sure, Aly marches to the beat of her own proverbial drum, and will pose/smile when she feels it's necessary. Or maybe she just prefers that candy cane over holding up a sign. Whatever the case, good on her, I say.
Monday 17 November 2014
[DAY +6] Met Ashraf this morning at the clinic. He removed pic line from my right arm that had been used the last few days to provide me with fluids intravenously. Ashraf says the rashes will clear up when my immune system recovers enough to take care of them. Until then, we will keep them at bay with pills and cream. He said to keep an eye on how I am feeling, and monitor my body temperature. Any fever that reaches 38C is very dangerous for me in my immune compromised state, so call him if my body temperature starts to rise. Dr Nadir has a cold, and I am feeling ok, so there is no need for me to see him and subject myself to the germs he may have. See you tomorrow.
--------------------------
Now, we walk. Did 3 laps around the hotel floor this morning and included some arm and shoulder exercises.
*Update*- Did 2 x 10 reps of wall squats today
-------------------------
We were treated to a rainbow this morning:
--------------------------
Elaina and Aly took some Christmas photos yesterday:
--------------------------
Now, we walk. Did 3 laps around the hotel floor this morning and included some arm and shoulder exercises.
*Update*- Did 2 x 10 reps of wall squats today
-------------------------
We were treated to a rainbow this morning:
--------------------------
Elaina and Aly took some Christmas photos yesterday:
Sunday 16 November 2014
[DAY +5] Feeling better today than I have felt since I arrived here. I have energy (been a while since I had some of that), I want to eat, a generally feel more awake. This is good, but I know that these good days must be balanced with the bad days ahead. Because there will be both, and taking advantage of good days is just as important as fighting through bad ones. Ashraf says that my blood test results from Friday's test indicate that my 'blood counts' are decreasing, but have not yet reached the bottom. Likely later this week I will be there. When my blood test results indicate I have bottomed out, I will be given a 'stimulation' shot. Exactly what is being stimulated and why, I am not sure, but I think the intention of the shot is to aid engraftment.
Another good thing to come from the blood test results is that my "lymphocyte" cell count is zero and has been for a few successive tests (my understanding is that pre-chemo Campath conditioning targets and destroys these cells, then chemo is given to kill any leftovers). I'm not a Haematologist, but I think lymphocytes are the immune system cells that get screwed up and start to attack my central nervous system, aka MS. Ashraf says that I need lymphocytes to survive, so we will be looking for them, along with all the other blood cell counts, to increase in population following bone marrow engraftment. The new lymphocytes are expected to be better behaved than the old ones.
---------------------------
The biggest drag on me the last 16 hours or so is a rash. It is around my waistline, around my neckline, and travels up the back of my neck to my head and behind my ears. It wants so badly to be itched, but I know if I do that it ain't gonna help. Ashraf believes it is a combination of my immune system being suppressed, the drugs in my body, and the laundry detergent that was used to wash my clothes. His advice: wash clothes in hot water only - no detergent, some IV fluids (my favourite), and don't worry - it will go away. Dr Nadir took a look this morning and said I'm the lucky owner of two different rashes. He has given me anti-biotic pills and anti-biotic cream for the neck/head rash. The other rash will go away on it's own as long as I follow Ashraf's advice.
---------------------------
Walked the 4th floor (our floor) of the hotel 3 consecutive times today.
--------------------------
Ashraf's parting words today were, "Your immune system is very low, very weak. Be careful.". I will.
Another good thing to come from the blood test results is that my "lymphocyte" cell count is zero and has been for a few successive tests (my understanding is that pre-chemo Campath conditioning targets and destroys these cells, then chemo is given to kill any leftovers). I'm not a Haematologist, but I think lymphocytes are the immune system cells that get screwed up and start to attack my central nervous system, aka MS. Ashraf says that I need lymphocytes to survive, so we will be looking for them, along with all the other blood cell counts, to increase in population following bone marrow engraftment. The new lymphocytes are expected to be better behaved than the old ones.
---------------------------
The biggest drag on me the last 16 hours or so is a rash. It is around my waistline, around my neckline, and travels up the back of my neck to my head and behind my ears. It wants so badly to be itched, but I know if I do that it ain't gonna help. Ashraf believes it is a combination of my immune system being suppressed, the drugs in my body, and the laundry detergent that was used to wash my clothes. His advice: wash clothes in hot water only - no detergent, some IV fluids (my favourite), and don't worry - it will go away. Dr Nadir took a look this morning and said I'm the lucky owner of two different rashes. He has given me anti-biotic pills and anti-biotic cream for the neck/head rash. The other rash will go away on it's own as long as I follow Ashraf's advice.
---------------------------
Walked the 4th floor (our floor) of the hotel 3 consecutive times today.
--------------------------
Ashraf's parting words today were, "Your immune system is very low, very weak. Be careful.". I will.
Saturday 15 November 2014
[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.
--------------------------
Future HSCT patients: bring a shoehorn. Your feet will likely swell from all the liquids you ingest intravenously. Mine did.
------------------------
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.
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.
--------------------------
Future HSCT patients: bring a shoehorn. Your feet will likely swell from all the liquids you ingest intravenously. Mine did.
------------------------
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.
Friday 14 November 2014
[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.
------------------
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.
-------------------
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.
-----------------
I like this one too:
https://www.youtube.com/watch?v=AEI85hYB_IE
----------------
My condolences to our friends Marcie and Jay Donahoe. Thinking of you guys.
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.
------------------
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.
-------------------
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.
-----------------
I like this one too:
https://www.youtube.com/watch?v=AEI85hYB_IE
----------------
My condolences to our friends Marcie and Jay Donahoe. Thinking of you guys.
Thursday 13 November 2014
[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.
------------------------
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.
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.
------------------------
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.
Wednesday 12 November 2014
[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?".
---------------------
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.
----------------------
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.
----------------------
I feel like I have a new life. I am able to see the realm of possibility again. For that, I am very grateful.
----------------------
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
---------------------
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.
----------------------
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.
----------------------
I feel like I have a new life. I am able to see the realm of possibility again. For that, I am very grateful.
----------------------
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
Tuesday 11 November 2014
[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.
-------------------------
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.
-------------------------
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.
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.
-------------------------
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.
-------------------------
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.
Monday 10 November 2014
[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.
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.
Sunday 9 November 2014
[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.
----------------------------------------
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
----------------------------------------
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:
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.
----------------------------------------
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
----------------------------------------
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:
Friday 7 November 2014
[DAY -3] Today (Saturday) is the Shabbat (sabbath - ...and on the 7th day He rested). The streets are empty, the stores are closed. It is Jewish law, and I think it is a good one. Everybody take a day to relax, feast, and enjoy each other's company. The law is pretty all-encompasing - I don't think there is much that you are allowed to do except eat and talk to each other. Starts Friday at sunset, ends Saturday at sunset (roughly). The work week here is Sunday to Thursday, and as you would expect, the shops are very busy Friday.
I have been asked more than once what I want to get out of this HSCT procedure. I would like to kill the disease, stop it dead. This would give my body a chance to achieve some healing (a good analogy I read is how can you paint the walls of your house if your house is on fire? - HSCT intends to put out the fire). As a result, it would be a lot easier for me to perform everyday activities like cooking for my family, walking to the park with Elaina & Aly, and just being more able bodied (and less tired) to help Anne around the house with whatever I can. My moodiness may also improve as a result of HSCT, but let's not get crazy, I don't want to lose all my great qualities.
In a few years from now, it would be great to be able to do some of this too:
https://www.youtube.com/watch?v=TBXv37PFcAQ
But I know I gotta be patient. I've read from many MS patient's post-HSCT accounts that the first year is very difficult and there will be many ups and down. Symptom stability and improvement will only start to present themselves after 1 year. And you gotta work for it.
I ate at the local McDonald's a couple times the first few days I was here. The burgers are bigger, they have red onions (which I love) on them, and they just tasted better. I forgot to take a picture, and I won't be going back because my immune system is deteriorating day by day, so you'll have to take my word for it.
Before I came, Anne bought me a MacBook Air computer to bring with me so I can write these posts, watch movies, surf the net, etc. What a great computer. Highly recommend.
------------------------
Update: Had my final Campath (30 mg/kg) injection today. Nurse Ashraf was kind enough to provide in-room service for that one!
I have been asked more than once what I want to get out of this HSCT procedure. I would like to kill the disease, stop it dead. This would give my body a chance to achieve some healing (a good analogy I read is how can you paint the walls of your house if your house is on fire? - HSCT intends to put out the fire). As a result, it would be a lot easier for me to perform everyday activities like cooking for my family, walking to the park with Elaina & Aly, and just being more able bodied (and less tired) to help Anne around the house with whatever I can. My moodiness may also improve as a result of HSCT, but let's not get crazy, I don't want to lose all my great qualities.
In a few years from now, it would be great to be able to do some of this too:
https://www.youtube.com/watch?v=TBXv37PFcAQ
But I know I gotta be patient. I've read from many MS patient's post-HSCT accounts that the first year is very difficult and there will be many ups and down. Symptom stability and improvement will only start to present themselves after 1 year. And you gotta work for it.
I ate at the local McDonald's a couple times the first few days I was here. The burgers are bigger, they have red onions (which I love) on them, and they just tasted better. I forgot to take a picture, and I won't be going back because my immune system is deteriorating day by day, so you'll have to take my word for it.
Before I came, Anne bought me a MacBook Air computer to bring with me so I can write these posts, watch movies, surf the net, etc. What a great computer. Highly recommend.
------------------------
Update: Had my final Campath (30 mg/kg) injection today. Nurse Ashraf was kind enough to provide in-room service for that one!
Thursday 6 November 2014
[DAY -4] Third Campath shot is complete. Final one is tomorrow, and then things will be not so enjoyable for about 2 weeks starting Sunday. Last night wasn't so bad, symptoms were a massive headache and general weakness, pretty good compared to the night before. Spent most of the day in my bed, but I was able to make the beautiful weather outside part of my day:
For any future HSCTers, my Vital Hotel room is equipped with a shower only (no tub). Since my legs aren't very strong, this makes getting into and out of much easier than movement in a shower/tub would be. Highly recommend.
Everybody doing well otherwise. Thanks a lot everybody for your well wishes and prayers.
-------------------------------------------
At home, Elaina is being a good big sister teaching Aly how to read:
For any future HSCTers, my Vital Hotel room is equipped with a shower only (no tub). Since my legs aren't very strong, this makes getting into and out of much easier than movement in a shower/tub would be. Highly recommend.
Everybody doing well otherwise. Thanks a lot everybody for your well wishes and prayers.
-------------------------------------------
At home, Elaina is being a good big sister teaching Aly how to read:
[DAY -6, DAY-5] And we're off! First (yesterday) and second (today) Campath shots are in the books. I am told that side effects (flu-like symptoms, fever, shivering, bone pain) are most likely to occur in the first day to two. After that your body becomes used to Campath, so things are better.
Last night I definitely had flu-like stuff (vomit), fever, shivering, and general overall weakness. Wasn't a fun night, and I didn't expect it (which probably made it worse), but thankfully Diana was here. If it was just my dad and I, it would have been a comedy of errors, and we probably would have gotten booted from the hotel for making too much noise, and a mess of the room.
I just returned from having my second Campath shot, and I'm told to expect similar experience to yesterday. We will see.
I also asked what the m^2 is (mg/m^2 is the unit of dosage for Fludarabin). Ashraf (nurse) says it is the calculated surface area of the body, based on height and weight. I am tall, so it is large, if I were hefty too, the number would be larger.
It is an absolutely gorgeous, sunny day here (27C).
-------------------
If anyone is looking for an Anna/Elsa Frozen dress, Aly has a suggestion:
Looks like it's fun times at home:
Last night I definitely had flu-like stuff (vomit), fever, shivering, and general overall weakness. Wasn't a fun night, and I didn't expect it (which probably made it worse), but thankfully Diana was here. If it was just my dad and I, it would have been a comedy of errors, and we probably would have gotten booted from the hotel for making too much noise, and a mess of the room.
I just returned from having my second Campath shot, and I'm told to expect similar experience to yesterday. We will see.
I also asked what the m^2 is (mg/m^2 is the unit of dosage for Fludarabin). Ashraf (nurse) says it is the calculated surface area of the body, based on height and weight. I am tall, so it is large, if I were hefty too, the number would be larger.
It is an absolutely gorgeous, sunny day here (27C).
-------------------
If anyone is looking for an Anna/Elsa Frozen dress, Aly has a suggestion:
Looks like it's fun times at home:
Tuesday 4 November 2014
Met with Prof Slavin, Samira, and got my schedule today. The party starts tomorrow.
Prof Slavin was very knowledgable and professional. I asked him a couple of things:
Q (me) - Will a higher dose of chemotherapy / immune system destruction be beneficial in defeating my disease? If you think so, then I want this. Please.
A (Slavin)- My medical opinion is no. We give you what we believe will help you, and what we believe is a safe dose. Here's my analogy: The largest bomb ever dropped is the atomic bomb in Hiroshima. It was designed to kill everybody and everything. But did it? No. People were coincidentally in cellars or wherever, and as a result, a small amount of people escaped death. This is entirely possible with the 'bad' cells in your immune system, whether we give you an increased dose (or even a lethal dose) of chemotherapy or not. A few of the 'bad' cells may escape death, or all the 'bad' cells may die. It is impossible for us to know by medical testing shortly after HSCT. (I will find out in the years to come, that's for sure.)
[That's his medical opinion, and Prof Slavin certainly knows more about this than I do, so I am happy to accept what they provide (for battling MS, I believe that any amount of chemo is better than none).]
Q - Can you explain this procedure (HSCT) to me?
A - Think of MS as an adult lion in the jungle. If you meet this lion, he will not recognize you as friendly, and will most certainly harm you and may even eat you. However, if you care for and feed a lion cub from birth, he will recognize you as friendly, and likely not want to harm you. This is how we think of HSCT for Auto-Immune diseases. Our goal with this procedure is to kill the cells in your immune system that are harming you, and replace them with new cells that can learn not to harm you - that will live in harmony with your body. You cannot teach an old dog new tricks. But you can teach puppies. (Got a good laugh at that one.)
Prof Slavin also talked about mesenchymal stromal cells (MSCs), and their potential curative affect on damage to the central nervous system. He was very positive regarding MSCs - even talked about how they are the likeliest candidate for anti-aging regimens (after being prompted by my father's question, which Prof Slavin really liked). MSCs are something that I will consider. Just not now. HSCT first, let's see how I respond, and then go from there.
Prof Slavin also asked that I provide updates to him on a regular basis, for the benefit of him, me, and others that are considering HSCT for their PPMS. I agree, so I agreed, and I intend on doing this.
His final words to me were "I hope we can help you". Me too, Prof Slavin. Me too.
Here is my HSCT schedule, discussed in detail with Samira:
Day -6 (Nov 5) : 5mg Campath
Day -5 : 10mg Campath
Day -4 : 15mg Campath
Day -3 : 30mg Campath
Day -2 : 15:00 Bone Marrow Aspiration (collection), 16:00 Fludarabin 40mg/m^2, 18:00 Cytoxan 60mg/kg
Day -1 : 12:00 Cytoxan 60mg/kg
Day 0 (Nov 11): 10:00 Bone Marrow Transplant (I get back what they collected)
Day +1 to +14 -ish : Reduction in population of various cells
Day +15 -ish onward : Engraftment, as seen by an increase in population of various cells via blood testing
Once population of these various cells are at an acceptable level, I am free to go home. Cautiously.
I will also be taking various medications (pills) during the schedule. This is intended to help keep various viruses and bacteria down while my immune system is unable to keep them down.
Samira said that I will be in the clinic round-the-clock during Days -2, -1, and 0.
---------------------------------
It was another beautiful day in Tel Aviv, as shown below:
But in the evening it rained, so we ate room service (two thumbs up). Weather here changes quickly. Here is a pic from last night's dinner out:
-----------------------------------
For 5+ years MS has attacked my body with no resistance. Tomorrow, resistance shows up in the form of biochemicals, and it will show up every day on each of the 5 days after that. Thank you, resistance. Please kick as much MS ass as you like. The more, the better.
Prof Slavin was very knowledgable and professional. I asked him a couple of things:
Q (me) - Will a higher dose of chemotherapy / immune system destruction be beneficial in defeating my disease? If you think so, then I want this. Please.
A (Slavin)- My medical opinion is no. We give you what we believe will help you, and what we believe is a safe dose. Here's my analogy: The largest bomb ever dropped is the atomic bomb in Hiroshima. It was designed to kill everybody and everything. But did it? No. People were coincidentally in cellars or wherever, and as a result, a small amount of people escaped death. This is entirely possible with the 'bad' cells in your immune system, whether we give you an increased dose (or even a lethal dose) of chemotherapy or not. A few of the 'bad' cells may escape death, or all the 'bad' cells may die. It is impossible for us to know by medical testing shortly after HSCT. (I will find out in the years to come, that's for sure.)
[That's his medical opinion, and Prof Slavin certainly knows more about this than I do, so I am happy to accept what they provide (for battling MS, I believe that any amount of chemo is better than none).]
Q - Can you explain this procedure (HSCT) to me?
A - Think of MS as an adult lion in the jungle. If you meet this lion, he will not recognize you as friendly, and will most certainly harm you and may even eat you. However, if you care for and feed a lion cub from birth, he will recognize you as friendly, and likely not want to harm you. This is how we think of HSCT for Auto-Immune diseases. Our goal with this procedure is to kill the cells in your immune system that are harming you, and replace them with new cells that can learn not to harm you - that will live in harmony with your body. You cannot teach an old dog new tricks. But you can teach puppies. (Got a good laugh at that one.)
Prof Slavin also talked about mesenchymal stromal cells (MSCs), and their potential curative affect on damage to the central nervous system. He was very positive regarding MSCs - even talked about how they are the likeliest candidate for anti-aging regimens (after being prompted by my father's question, which Prof Slavin really liked). MSCs are something that I will consider. Just not now. HSCT first, let's see how I respond, and then go from there.
Prof Slavin also asked that I provide updates to him on a regular basis, for the benefit of him, me, and others that are considering HSCT for their PPMS. I agree, so I agreed, and I intend on doing this.
His final words to me were "I hope we can help you". Me too, Prof Slavin. Me too.
Here is my HSCT schedule, discussed in detail with Samira:
Day -6 (Nov 5) : 5mg Campath
Day -5 : 10mg Campath
Day -4 : 15mg Campath
Day -3 : 30mg Campath
Day -2 : 15:00 Bone Marrow Aspiration (collection), 16:00 Fludarabin 40mg/m^2, 18:00 Cytoxan 60mg/kg
Day -1 : 12:00 Cytoxan 60mg/kg
Day 0 (Nov 11): 10:00 Bone Marrow Transplant (I get back what they collected)
Day +1 to +14 -ish : Reduction in population of various cells
Day +15 -ish onward : Engraftment, as seen by an increase in population of various cells via blood testing
Once population of these various cells are at an acceptable level, I am free to go home. Cautiously.
I will also be taking various medications (pills) during the schedule. This is intended to help keep various viruses and bacteria down while my immune system is unable to keep them down.
Samira said that I will be in the clinic round-the-clock during Days -2, -1, and 0.
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It was another beautiful day in Tel Aviv, as shown below:
But in the evening it rained, so we ate room service (two thumbs up). Weather here changes quickly. Here is a pic from last night's dinner out:
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For 5+ years MS has attacked my body with no resistance. Tomorrow, resistance shows up in the form of biochemicals, and it will show up every day on each of the 5 days after that. Thank you, resistance. Please kick as much MS ass as you like. The more, the better.
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