I'M HOME!!!
Nothing like home sweet home. My numbers climbed again overnight and this morning I was discharged. I feel so much better than yesterday. Last night they stopped the IV antibiotics so I was not connected to the IV pole. I slept very well. The nurses came in early today very happy to report the nightly labs came back very strong and were very confident I would be out early today.
Dr. Burt came in around 9:00 to say I was free to go, shook my hand and wished me well. I thanked him on behalf of Bea and I and he left. I never found a way to connect with him but I don't think if my admission were 100 days that would have changed. He's a brilliant scientist with a passion for his work to help people beat their diseases. He practices a different kind of medicine than most of us are used to. He doesn't bill by the visit or procedure. He thinks globally and it's fascinating to watch. He lives on studies and outcomes and then does what he has proven will work to help as many people possible with a growing number of autoimmune diseases. He works 24-7 and I'm grateful for all that he does.
Bea did the Amazing Race journey today taking the 6:00 AM flight to Chicago to meet me at the hospital for discharge around 10:00. She packed my bags, made sure she had all of the discharge paperwork and out the door we flew. We raced back to the airport to try to catch the 12:45 to Baltimore then on to Islip. Our original flight wasn't until 6:50 PM arriving at 10:00 this evening. We were met with the grim news that the 12:45 was overbooked by an amount so high they wouldn't recommend putting our names on the stand by list Grrrrr. I wasn't afraid to use the "can't you see I've had a rough week" trick with the hospital mask, cue ball head and the best worst post chemo face I could muster, it wasn't hard. Even though she gave us the bad news she kept typing away. Whenever they keep typing you always have that glimmer of hope. Although, too often a seat change request for me results in 18 minutes of typing only to result in the same 37E I walked in with...
So I was in fact getting tired and it didn't appear we were getting anywhere. She printed the boarding passes for the 6:50 and the stand by passes for the earlier flight. I thanked her for all of her time. We began the wheeled journey to the gate which bypasses the security line :)). We realized we didn't check our luggage so we were about to lose a few of our personal liquids. I had my favorite 7 oz L'occitaine hand cream but it was only half full. He wasn't buying my logic so down it went. We arrived at the gate to check in for stand by and suddenly a camera crew arrived to video the ticket agent and a Supervisor on scene. Bea was handing the agent the paperwork and suddenly she was in the middle of a shoot. I couldn't follow much as I was again trying to impress upon them the need for me to arrive home by letting my head fall back and to the side in my wheelchair with my eyes barely more than half open. Amazingly, within 2 minutes of furious typing 2 tickets popped up to Baltimore and then on to NY!!!
As they were dumping me by the gate the producer chased down Bea to sign a disclosure form to use the footage for the show "On the Fly" on TLC which apparently is a reality show about the trials and tribulations of flying Southwest. After Bea agreed he came to me because I was in the background of my wife's scene... I respectfully declined.
Our flights were fine. Despite very full flights Bea and I managed to keep the extra seat in our row empty. I wonder why??
It was really great to arrive home. Mom and Dad were cooking chicken parmigiana for Jose Miguel and we had a nice meal. I'm really grateful to have ended this part of the process and soooooo looking forward to my bed. Good night!
Thursday, May 31, 2012
Wednesday, May 30, 2012
Day + 9
My numbers are climbing almost as fast as subscribers to the Facebook class action law suit!!
As of this morning my white blood count finally broke the <0.1 and came in at 0.3. A few hours later they drew another sample and my wbc count increased to 1.3. The minimum range is 3.5-10.5 but I'm no longer neutripenic. My absolute neutrophil count increased to 0.1 from too low too count so the composite report impressed Dr. Burt enough to give me those magic words... I'M GOING HOME TOMORROW!!!
I'm sitting in my chair listening to the Mets through the Internet and waiting for dinner in my room. I'm feeling much better from a tough first half of the day. For my last full day in Prentice I really thought it would be easier but it wasn't. The combination of the engrafting process itself and the medication used to stimulate it has caused great pain and discomfort. The main symptom is throbbing deep bone pain as a result of the Neupogen medication working within my bone marrow to increase stem cell production and distribution of appropriate cell lineages into the blood stream. The pain is worse in the pelvic and chest areas, and of course, fever. Secondary to that is profuse sweating all day and particularly during the few times I was able to nod off for a nap when the flood gates would open. Lastly, I have suffered an MS symptom all day called L'hermitte's Syndrome which are sharp electrical pulses usually down one or both legs that occur with the stretching of the spinal column. These occurred down my right leg. I spoke with Dr. Burt regarding these and he thought it was just a result of the extreme stress put on my body culminated with the 5 days of Neupogen injections. I certainly hope so because leaving the hospital with a new MS symptom was not the idea.
I have committed to not judge success/failure of this procedure on one day or week or symptom. This treatment was a long process and so is the recovery. To be honest I spent the first week of treatment doubting myself for choosing the nonmyeloablative protocol as opposed to the myeloablative based on my 10 year diagnosis but this thought process is not helpful. I did appropriate research, prayer and made the best informed decision considering multiple variables. Dr. Burt is the best at what he does for MS and many other diseases in the world and in the end this process in many ways was as much as I could handle. The rest is out of my hands but to care for and respect my body appropriately.
My responsibility also now moves to those before me who tirelessly "pay it forward" and this I will do with zeal. I anticipate significant pushback from the political part of the business of MS so I need to be wise, but the message must be heard.
Bea will be returning to Chicago on the early flight from NY to help me move out (funny after 16 days it feels like a move. It shouldn't take more than 3-4 men and a good sized truck!) She went home on Monday as Jose Miguel just needed some Mommy time and in truth we weren't optimistic we would make our projected 5/31 discharge with the problems I was having with all the fevers. As expected, Jose Miguel was thrilled and it was a good move for Bea too. She needed our bed, house, son etc. to reconnect for a break during this crazy ride that began for us in earnest April 18th.
I have also decided to not rush back to work too quickly. I will look into my disability policies to see if I can take at least 2-3 months from home. I feel my body needs proper time and space to begin repair. By this afternoon I felt strong enough to offer to attempt the trip to NY on my own tomorrow but Bea insisted on returning to pick me up. It will be a lot easier for me as and I will enjoy having Bea with me. AND I'm exhausted. We will arrive in Islip by 10:00 tomorrow evening.
I'm hoping for a restful night after a busy day. I feel I will sweat through the night but if the fever stays away I should sleep well.
Just a special thanks to all of you who have reached out to me privately with emails, texts and calls. These messages helped me through some difficult moments and you contributed to the success of this treatment more than you know.
Also a special prayer for a family member who recently made a very difficult decision to improve her own health. She has been reading my blog and I want you to know, I and so many others love you and are praying for your speedy recovery.
As of this morning my white blood count finally broke the <0.1 and came in at 0.3. A few hours later they drew another sample and my wbc count increased to 1.3. The minimum range is 3.5-10.5 but I'm no longer neutripenic. My absolute neutrophil count increased to 0.1 from too low too count so the composite report impressed Dr. Burt enough to give me those magic words... I'M GOING HOME TOMORROW!!!
I'm sitting in my chair listening to the Mets through the Internet and waiting for dinner in my room. I'm feeling much better from a tough first half of the day. For my last full day in Prentice I really thought it would be easier but it wasn't. The combination of the engrafting process itself and the medication used to stimulate it has caused great pain and discomfort. The main symptom is throbbing deep bone pain as a result of the Neupogen medication working within my bone marrow to increase stem cell production and distribution of appropriate cell lineages into the blood stream. The pain is worse in the pelvic and chest areas, and of course, fever. Secondary to that is profuse sweating all day and particularly during the few times I was able to nod off for a nap when the flood gates would open. Lastly, I have suffered an MS symptom all day called L'hermitte's Syndrome which are sharp electrical pulses usually down one or both legs that occur with the stretching of the spinal column. These occurred down my right leg. I spoke with Dr. Burt regarding these and he thought it was just a result of the extreme stress put on my body culminated with the 5 days of Neupogen injections. I certainly hope so because leaving the hospital with a new MS symptom was not the idea.
I have committed to not judge success/failure of this procedure on one day or week or symptom. This treatment was a long process and so is the recovery. To be honest I spent the first week of treatment doubting myself for choosing the nonmyeloablative protocol as opposed to the myeloablative based on my 10 year diagnosis but this thought process is not helpful. I did appropriate research, prayer and made the best informed decision considering multiple variables. Dr. Burt is the best at what he does for MS and many other diseases in the world and in the end this process in many ways was as much as I could handle. The rest is out of my hands but to care for and respect my body appropriately.
My responsibility also now moves to those before me who tirelessly "pay it forward" and this I will do with zeal. I anticipate significant pushback from the political part of the business of MS so I need to be wise, but the message must be heard.
Bea will be returning to Chicago on the early flight from NY to help me move out (funny after 16 days it feels like a move. It shouldn't take more than 3-4 men and a good sized truck!) She went home on Monday as Jose Miguel just needed some Mommy time and in truth we weren't optimistic we would make our projected 5/31 discharge with the problems I was having with all the fevers. As expected, Jose Miguel was thrilled and it was a good move for Bea too. She needed our bed, house, son etc. to reconnect for a break during this crazy ride that began for us in earnest April 18th.
I have also decided to not rush back to work too quickly. I will look into my disability policies to see if I can take at least 2-3 months from home. I feel my body needs proper time and space to begin repair. By this afternoon I felt strong enough to offer to attempt the trip to NY on my own tomorrow but Bea insisted on returning to pick me up. It will be a lot easier for me as and I will enjoy having Bea with me. AND I'm exhausted. We will arrive in Islip by 10:00 tomorrow evening.
I'm hoping for a restful night after a busy day. I feel I will sweat through the night but if the fever stays away I should sleep well.
Just a special thanks to all of you who have reached out to me privately with emails, texts and calls. These messages helped me through some difficult moments and you contributed to the success of this treatment more than you know.
Also a special prayer for a family member who recently made a very difficult decision to improve her own health. She has been reading my blog and I want you to know, I and so many others love you and are praying for your speedy recovery.
Tuesday, May 29, 2012
Day + 8
On a day that I hope won't be repeated any time soon due to high fever, headache yada yada yada I want to share a happy story that is the reason for me being in Chicago today, and why I believe this procedure will work for me long term.
In the past year as my disease was progressing too fast to manage physically and emotionally, like many in times of need, I turned to God to ask for his strength, courage and assistance to find a way to stabilize my disease and grant me the opportunity to continue to provide for my family as a productive member of society. There was no doubt that without a significant change in treatment, the "medication of the month" treatment plan I was on had me wheelchair bound too soon to fathom.
In the past few years I had lost my way from mass as a routine part of my life. There was no specific reason. I was living in Puerto Rico for 7 years and I didn't prioritize mass as I had while living in NY. As my health was deteriorating in 2011, I found more time for mass, to pray, meditate and ask for support through this trying period. I was aggressively searching for MS treatment options and in early Autumn I found HSCT for the treatment of MS through research on the Internet. I recall finding some YouTube videos of patients and physicians discussing the procedure and literally bawling in my bed as I watched and listened to people who were confined to a wheelchair due to progressive MS, until HSCT changed their lives.
In addition to finding more time for traditional prayer I was praying to my Grandma who passed in 1998. We were very close as she lived in our house since I was a child. She was a strong Irish woman all 4 feet 10 inches of her. She was born in Brooklyn, NY and was diagnosed with Polio at the age of 4. She was quarantined from the rest of her family for 3 months and the family physician didn't think she would survive the disease. Veronica Horan Attara not only survived, she married, had 2 daughters, a career with the old Abraham and Straus department stores, enjoyed a long and happy retirement and passed away at 88 years old. I have vivid memories of childhood racing home from the school bus to see if I could arrive to my Grandma's apartment in our house by 3:33 as displayed on one of those early digital clocks where the numbers flip up and down as time changes. It was just a game between us. Since she passed, every time I see 3:33 I say a short prayer to my Grandma.
My wife and I were married on April 10, 2010 in San Juan, Puerto Rico. The mass was scheduled at 3:00 in the afternoon. It was a wonderful church mass and a beautiful reception with friends and family followed. Most of my family knew of my close connection with my Grandma and 3:33 so many were wondering how or if Vera would make her presence felt. Later in the evening I found on my Blackberry 3 draft messages created at exactly 3:33 PM. To do this manually you have to hit the control button on the Blackberry 12 times in a row to create 3 drafts. I tried it several times and it's really not easy to do, especially when you're not touching it. The Blackberry was in the chest pocket of my tuxedo jacket and you can see on the video of the mass that at 3:33 I was motionless (scared s%$#) waiting for my beautiful bride to walk down the aisle. It didn't surprise me as I feel her continued presence in my life.
In November of 2011 my pursuit of HSCT was fast and furious. I was in conversations with University of Heidelberg in Germany, Northwestern University Hospital in Chicago and a facility in Manital India. All of these facilities require voluminous documentation of disease progression through chronological MRI films and reports. My first choice for many reasons was Chicago but I had been rejected from the MIST Clinical Trial because I did not meet criteria. Dr. Burt insists on clinical evidence that the MS is still in the inflammatory stage for reasons previously noted. I had sent him several MRIs which did not demonstrate any active or enhancing lesions in the previous 2 years. This does not mean my disease wasn't inflammatory, it only indicates that during the time of my annual MRI evaluations, many lesions appeared but none were enhancing.
My Neurologist in NY ordered another study in November. It's not normal to repeat studies so closely but I was having additional symptoms so I didn't argue. After I came out of the machine I felt a strange sensation but didn't think anything of it. Our lives at that time were so hectic I wasn't great at deciphering my feelings. I had recently moved my wife and son from Puerto Rico and the house we purchased in NY fell through so we were living in a hotel with our possessions in 3 different storage facilities, we had no house and smiles were short.
A week later I received the results from the MRI Center and for the first time in several years my MRI included a Gadolinium enhancing lesion in my brain! This is obviously bad news because it demonstrates my disease is progressing, but it was GREAT news because Dr. Burt would see my disease was still inflammatory and I would qualify for his treatment. It was an emotional moment for my wife and I and I explained to her how I felt a strange sensation coming out of the MRI machine a week before. I immediately thought of my Grandma and was so thankful for these blessings. I was a little suspicious so I looked into the envelope for the CD. Sure enough, this study was printed on CD number 333.
Thanks Grandma, I love you.
In the past year as my disease was progressing too fast to manage physically and emotionally, like many in times of need, I turned to God to ask for his strength, courage and assistance to find a way to stabilize my disease and grant me the opportunity to continue to provide for my family as a productive member of society. There was no doubt that without a significant change in treatment, the "medication of the month" treatment plan I was on had me wheelchair bound too soon to fathom.
In the past few years I had lost my way from mass as a routine part of my life. There was no specific reason. I was living in Puerto Rico for 7 years and I didn't prioritize mass as I had while living in NY. As my health was deteriorating in 2011, I found more time for mass, to pray, meditate and ask for support through this trying period. I was aggressively searching for MS treatment options and in early Autumn I found HSCT for the treatment of MS through research on the Internet. I recall finding some YouTube videos of patients and physicians discussing the procedure and literally bawling in my bed as I watched and listened to people who were confined to a wheelchair due to progressive MS, until HSCT changed their lives.
In addition to finding more time for traditional prayer I was praying to my Grandma who passed in 1998. We were very close as she lived in our house since I was a child. She was a strong Irish woman all 4 feet 10 inches of her. She was born in Brooklyn, NY and was diagnosed with Polio at the age of 4. She was quarantined from the rest of her family for 3 months and the family physician didn't think she would survive the disease. Veronica Horan Attara not only survived, she married, had 2 daughters, a career with the old Abraham and Straus department stores, enjoyed a long and happy retirement and passed away at 88 years old. I have vivid memories of childhood racing home from the school bus to see if I could arrive to my Grandma's apartment in our house by 3:33 as displayed on one of those early digital clocks where the numbers flip up and down as time changes. It was just a game between us. Since she passed, every time I see 3:33 I say a short prayer to my Grandma.
My wife and I were married on April 10, 2010 in San Juan, Puerto Rico. The mass was scheduled at 3:00 in the afternoon. It was a wonderful church mass and a beautiful reception with friends and family followed. Most of my family knew of my close connection with my Grandma and 3:33 so many were wondering how or if Vera would make her presence felt. Later in the evening I found on my Blackberry 3 draft messages created at exactly 3:33 PM. To do this manually you have to hit the control button on the Blackberry 12 times in a row to create 3 drafts. I tried it several times and it's really not easy to do, especially when you're not touching it. The Blackberry was in the chest pocket of my tuxedo jacket and you can see on the video of the mass that at 3:33 I was motionless (scared s%$#) waiting for my beautiful bride to walk down the aisle. It didn't surprise me as I feel her continued presence in my life.
In November of 2011 my pursuit of HSCT was fast and furious. I was in conversations with University of Heidelberg in Germany, Northwestern University Hospital in Chicago and a facility in Manital India. All of these facilities require voluminous documentation of disease progression through chronological MRI films and reports. My first choice for many reasons was Chicago but I had been rejected from the MIST Clinical Trial because I did not meet criteria. Dr. Burt insists on clinical evidence that the MS is still in the inflammatory stage for reasons previously noted. I had sent him several MRIs which did not demonstrate any active or enhancing lesions in the previous 2 years. This does not mean my disease wasn't inflammatory, it only indicates that during the time of my annual MRI evaluations, many lesions appeared but none were enhancing.
My Neurologist in NY ordered another study in November. It's not normal to repeat studies so closely but I was having additional symptoms so I didn't argue. After I came out of the machine I felt a strange sensation but didn't think anything of it. Our lives at that time were so hectic I wasn't great at deciphering my feelings. I had recently moved my wife and son from Puerto Rico and the house we purchased in NY fell through so we were living in a hotel with our possessions in 3 different storage facilities, we had no house and smiles were short.
A week later I received the results from the MRI Center and for the first time in several years my MRI included a Gadolinium enhancing lesion in my brain! This is obviously bad news because it demonstrates my disease is progressing, but it was GREAT news because Dr. Burt would see my disease was still inflammatory and I would qualify for his treatment. It was an emotional moment for my wife and I and I explained to her how I felt a strange sensation coming out of the MRI machine a week before. I immediately thought of my Grandma and was so thankful for these blessings. I was a little suspicious so I looked into the envelope for the CD. Sure enough, this study was printed on CD number 333.
Thanks Grandma, I love you.
Monday, May 28, 2012
Day + 7
Last night Bea left early as the long night before and into yesterday took a lot out of both of us. I was exhausted so by 8:00 I was lights out. It feels strange going to bed before the sun was down but I got over it quickly. While most of the day yesterday I battled fever and headache, by last evening I felt good. I was quick to sleep and slept well until about 1:30. I awoke for some vitals checks and then I just did a little reading. I was in a painless, feverless bliss so even though I wasn't sleeping I was a happy man!
Around 2:00 AM I realized I would need some assistance to help me turn out the lights again so I ordered a light Ambien. It quickly kicked in and I was out until about 4:00 for the morning blood draw and weigh in. An hour later they came back for my 780 mcgs shots of Neupogen to get some engrafting going on.
This morning's numbers actually came back lower than yesterday so hopefully we'll see a rise tomorrow. I took more platelets this morning but then managed to hold on to them throughout the day. Most of today I maintained a low grade fever between 99-101. Dr. Burt ordered oral Prednizolone 30 mg as this is his normal "taper" from the rATG. I was getting 125 mg IV Solumedrol because I tolerate it better but because the fever wasn't ceasing he moved me to the Prednizolone. This kept the fever under control and limited the headache but for some reason my walking still wasn't great. I think it's the effects from the higher fevers in the past few days which caused dehydration and spasticity. This steroid makes me very hyper and jittery so I tried to log some miles in the hall to burn some fuel. I only got 7-8 laps in before I returned. My left leg was just not keeping pace and even with the assistance of the IV pole no records were broken today.
I needed to calm down so I ordered some IV Attivan .5mg. For the rest of the day I have been caught in this weird zone where I need to sleep immediately for 10-15 mins and then I'm up for an hour or so. One unexpected symptom the past few days is I'm urinating literally every 10 minutes when I'm awake. Thankfully this subsides during sleep but the urgency is so strong I only have seconds to take care of business. I'm told, you guessed it, "This is not something the doctors haven't seen before"... Tomorrow I will tell them I have begun belching from my ears to see what they say!
So I realize in reviewing this post there's not a lot of positive aspects. I pretty much described my day as playing the part of a leaky bald dude who's greatest accomplishment was dragging his dead leg around the hall in gown and gloves for a few minutes. However, please consider the following positive accomplishments:
1 This is the 2nd day in a row the kid from around the corner didn't run by screaming into my room "Hey Howie Mandel your show Flashmob sucks"!!
2 This is the 15,705th consecutive day I am NOT on ESPNs not top 10 list
3 This is the 4th week in a row I'm not dumping $200 in gas into my SUV :)))))
Around 2:00 AM I realized I would need some assistance to help me turn out the lights again so I ordered a light Ambien. It quickly kicked in and I was out until about 4:00 for the morning blood draw and weigh in. An hour later they came back for my 780 mcgs shots of Neupogen to get some engrafting going on.
This morning's numbers actually came back lower than yesterday so hopefully we'll see a rise tomorrow. I took more platelets this morning but then managed to hold on to them throughout the day. Most of today I maintained a low grade fever between 99-101. Dr. Burt ordered oral Prednizolone 30 mg as this is his normal "taper" from the rATG. I was getting 125 mg IV Solumedrol because I tolerate it better but because the fever wasn't ceasing he moved me to the Prednizolone. This kept the fever under control and limited the headache but for some reason my walking still wasn't great. I think it's the effects from the higher fevers in the past few days which caused dehydration and spasticity. This steroid makes me very hyper and jittery so I tried to log some miles in the hall to burn some fuel. I only got 7-8 laps in before I returned. My left leg was just not keeping pace and even with the assistance of the IV pole no records were broken today.
I needed to calm down so I ordered some IV Attivan .5mg. For the rest of the day I have been caught in this weird zone where I need to sleep immediately for 10-15 mins and then I'm up for an hour or so. One unexpected symptom the past few days is I'm urinating literally every 10 minutes when I'm awake. Thankfully this subsides during sleep but the urgency is so strong I only have seconds to take care of business. I'm told, you guessed it, "This is not something the doctors haven't seen before"... Tomorrow I will tell them I have begun belching from my ears to see what they say!
So I realize in reviewing this post there's not a lot of positive aspects. I pretty much described my day as playing the part of a leaky bald dude who's greatest accomplishment was dragging his dead leg around the hall in gown and gloves for a few minutes. However, please consider the following positive accomplishments:
1 This is the 2nd day in a row the kid from around the corner didn't run by screaming into my room "Hey Howie Mandel your show Flashmob sucks"!!
2 This is the 15,705th consecutive day I am NOT on ESPNs not top 10 list
3 This is the 4th week in a row I'm not dumping $200 in gas into my SUV :)))))
Sunday, May 27, 2012
Day + 6
There have been a couple of interesting developments yesterday and today that I have no idea how to interpret but I thought I'd pass them along. For the past few years as my MS has progressed my ability to feel certain stimuli has changed. In some areas of my body I have hypersensitivity and in other areas I have all but lost sensation. For example, you know when you get an itch on your back and you tell someone e.g. spouse, neighbor, mailman hey scratch my back! It starts in one area and then you say left, left, up, down, there Ahhhhh! That has not happened to me for a few years because touching my skin causes irritation and pain in most cases. Yesterday afternoon I had an itch on my back and I asked Bea to scratch it. I felt the itch spread first left then right, up then down! It was like electric rice krispies popping all around my back. I could literally feel electricity reaching locations on my "grid" that had been shut down. Bea scratched and scratched all over my back and it was the most amazingly satisfying feeling.
The second development happened during my shower as I was sitting in the chair to wash my feet. Normally touching my hypersensitive left foot causes uncontrollable spasms in my foot and leg from the stimulation. It's sort of like when you scratch a dog on their back and their leg starts shaking. Well today I scrubbed my foot and there were no spasms! I wonder if I'll still chase the newspaper boy on his bike??
Lastly, after my shower today I was applying copious amounts of face cream on my bald bean and face. All of the chemicals have really dried me out. I noticed I could actually feel a slight coolness from the cream in the jar. For the past year or more I had lost heat/cool sensation in most of my fingers.
Is it possible that within one week of chemotherapy treatment that destroyed the roaming autoreactive T and some B cell lymphocytes that were literally hunting and killing live healthy tissue my oligodendrocytes have created some new myelin and actually reparired a small amount of damaged axons to allow for normal electrical conductivity? Certainly a bit early for this conclusion but cool stuff nonetheless. I can just imagine Dr. Burt's face after presenting my scientific theory for this one...
I'm sitting in my chair hooked up to the IV pole receiving a big 'ol bag of platelets. We're trying to avoid another fever spike like last night and this morning. About 3:00 AM today my fever spiked and my head was pounding. Unfortunately it didn't subside until about 3:00 this afternoon despite great efforts of the nursing team to do all they could to make me feel beter. It was honestly the most difficult 12 hours of my admission so far. The NP Amy came in this morning to look at the numbers but primarily to give me a pep talk and tell me to hang in there (as if there were another option??). They all care so much but sometimes you just have to ride it out.
It's very interesting that the most difficult part of this process to determine is if/when your body develops fever due to the suppressed immunity. Modern science has come a long way to prevent or at least minimize the side effects of the actual chemotherapy agents but the problems start if your body develops fever. Dr. Burt was hesitant to give me more IV steroids because they can actually cause different complications but because the fever was so persistent and causing so much discomfort he relented (Come on man just give me one more I swear I'll stop I swear!). In addition to the steroids I'm hooked up to the IV pole basically 24 hrs. a day again for fluids and the antibiotics to keep me hydrated after all of these fevers. I have lost 9 lbs. since I arrived mostly in water weight so I've got some eating to do!
Bea left about an hour ago to stay in the apartment tonight. We had a rough night and morning and she didn't get much sleep either. Hopefully we're on an upswing that will last until my white blood cell numbers start coming up in the next few days. At that time the fevers should stop and I can begin a proper recovery from HSCT.
Before Bea left we went for a long walk down by the water and took this picture of the boats on Lake Michigan. Ok, Bea went for a walk and I waited for her in the bed Zzzzzz.
The second development happened during my shower as I was sitting in the chair to wash my feet. Normally touching my hypersensitive left foot causes uncontrollable spasms in my foot and leg from the stimulation. It's sort of like when you scratch a dog on their back and their leg starts shaking. Well today I scrubbed my foot and there were no spasms! I wonder if I'll still chase the newspaper boy on his bike??
Lastly, after my shower today I was applying copious amounts of face cream on my bald bean and face. All of the chemicals have really dried me out. I noticed I could actually feel a slight coolness from the cream in the jar. For the past year or more I had lost heat/cool sensation in most of my fingers.
Is it possible that within one week of chemotherapy treatment that destroyed the roaming autoreactive T and some B cell lymphocytes that were literally hunting and killing live healthy tissue my oligodendrocytes have created some new myelin and actually reparired a small amount of damaged axons to allow for normal electrical conductivity? Certainly a bit early for this conclusion but cool stuff nonetheless. I can just imagine Dr. Burt's face after presenting my scientific theory for this one...
I'm sitting in my chair hooked up to the IV pole receiving a big 'ol bag of platelets. We're trying to avoid another fever spike like last night and this morning. About 3:00 AM today my fever spiked and my head was pounding. Unfortunately it didn't subside until about 3:00 this afternoon despite great efforts of the nursing team to do all they could to make me feel beter. It was honestly the most difficult 12 hours of my admission so far. The NP Amy came in this morning to look at the numbers but primarily to give me a pep talk and tell me to hang in there (as if there were another option??). They all care so much but sometimes you just have to ride it out.
It's very interesting that the most difficult part of this process to determine is if/when your body develops fever due to the suppressed immunity. Modern science has come a long way to prevent or at least minimize the side effects of the actual chemotherapy agents but the problems start if your body develops fever. Dr. Burt was hesitant to give me more IV steroids because they can actually cause different complications but because the fever was so persistent and causing so much discomfort he relented (Come on man just give me one more I swear I'll stop I swear!). In addition to the steroids I'm hooked up to the IV pole basically 24 hrs. a day again for fluids and the antibiotics to keep me hydrated after all of these fevers. I have lost 9 lbs. since I arrived mostly in water weight so I've got some eating to do!
Bea left about an hour ago to stay in the apartment tonight. We had a rough night and morning and she didn't get much sleep either. Hopefully we're on an upswing that will last until my white blood cell numbers start coming up in the next few days. At that time the fevers should stop and I can begin a proper recovery from HSCT.
Before Bea left we went for a long walk down by the water and took this picture of the boats on Lake Michigan. Ok, Bea went for a walk and I waited for her in the bed Zzzzzz.
Saturday, May 26, 2012
Day + 5
In the past few months I have discovered different forums and groups populated by people who have had HSCT for autoimmune diseases, some specific to MS and some even more specific to HSCT for MS by Dr. Burt in Northwestern University. Most of these people have their own independent blogs in addition to postings of studies, papers other publications in the public forums like thisisms.com and closed Facebook groups for HSCT patients (don't you wish you could join that group??). Most of the independent blog type data content was incredibly helpful through the research, application and preparatory phases of HSCT. The level of specificity with which each "blogger" described their symptoms was helpful yet alarming.
At this moment there are two women going through HSCT these same weeks as myself. We were introduced by George Goss whom in an earlier post I introduced as the single greatest source of HSCT for MS information in the world. He is a good family man and a physicist from CA with the "go to" blog source for all data, studies, facilities etc. His URL is in an earlier post. He received HSCT for his Secondary Progressive Multiple Sclerosis (SPMS) 2+ years ago in Heidelberg Germany. He reports that his disease has stopped progressing 100% AND he has experienced a 50% reversal of physical deficit based on his pretransplant EDSS. George works tirelessly for the personal satisfaction of educating others about HSCT for MS and to share how well it has worked for him. I look forward to meet George one day.
While helping us all individually, George thought it would be helpful for us to be able to share the experience of planning the HSCT journey together. Melissa, Elin and I have communicated by email through our procedures just to provide positive energy from different facilities and different continents. Elin is in Sweden undergoing a myeloablative BEAM protocol and Melissa is in Israel for a nonmyeloablative treatment similar to mine. I'm happy to report both Elin and Melissa are doing great. All of our "stem cell birthdays" were this past week. Both of their blogs have maintained a refreshing positivity despite the inevitable difficulties of HSCT, and unlike most other HSCT blogs that focus usually on what went wrong during their day or week. In the spirit of my two other MS-Keteers, I will attempt to describe my day by highlighting a few positives to inform you of the daily events. Here goes:
1 I was not arrested or detained for any measurable period by local, state or federal authorities.
2 I was not hit by a bus or any other motorized/mechanized vehicle within the last 24 hours
2 None of my teeth were either forcibly removed nor did they fall out on their own
3 There were no (reported) fires in either this hospital ward or the hospital property in general
4 I did not bring a child with me into an electronic tanning machine prompting national media attention (if you're reading this outside of NY you probably won't get that joke)
As you can see clearly, this has been a very good day! A few other things did happen that I would categorize as worthy of mention. For example, a short while after completing my blog post last night the nurse determined my PICC line was clogged fuller than a Paula Dean coronary artery. This took about 90 minutes of on and off access to my PICC line to clear it. She used medication to inject and try to start the flow again. It was slightly alarming as this is the 44cm line from the inside of my right bicept and fed through to the exterior of the superior vena cava of my heart. If we can't get blood pumping from there, we gots a problem. No matter what "challenge" you encounter here at Northwestern EVERY single person is trained to maintain the same positive theme. A few examples of these are: "Every person is different and experiences HSCT in a different way", or " It's not uncommon to see this as a response from the chemo", or my favorite, "It's not something the doctor hasn't seen before".
Before my brother left last night I did feel weaker but I attributed it to the enormous amounts of energy wasted trying to will my NY Rangers past the NJ Devils in the playoff game last night. It went for nought as we were eliminated in overtime from the quest for Lord Stanley's cup. In truth, for the first time ever I wasn't terribly heartbroken as I do get a little too "wrapped up" into it and this is not a good use of limited energy. During a morning Skype with the family in NY, I could still see how angry our son Matthew was with the loss. He's the most competitive kid I know and it was funny to listen and see him talk specifically about if they had only done this or that better they would have won. I remember those days...
Most of last night was filled with nurses and techs so sleep wasn't long or restful. By 7:00 this morning I was up with fever, headache and overall weakness. The fever lasted throughout the day ranging from 99 to 102 but I was assured, "this is nothing the doctor hasn't seen before". I was given IV steroids to try to control the fever and pain and while they worked for a short while the effect didn't last and I was back up to 102 for most of the afternoon and evening. I received a transfusion of platelets due to a measurement of 14 when it should be above 20 for my position as Neutropenic meaning <0.1
Fever in general is not good for MS patients because it usually exacerbates symptoms due to the fact that fever is the body's response through a sort of hyper immunity mode to fight incoming invaders. Unfortunately, my former immune system was attacking my healthy live tissue so when an attack is launched, the shock and awe of the campaign is usually felt by worsening symptoms. Fever during Nutropenia is particularly serious because there's really nothing to attack. My blood was drawn 4 times today to check for bacterial and viral infections but there were none. My body is just reacting to the fact I have a significantly suppressed immune system and it doesn't have any clue why. It's like firemen being called to a house but can't find the fire so they just start destroying the house looking for something to do. (that one's for you JJ).
These fevers in my case cause a state of paralysis. I can stand with support just long enough to pee, my hands and feet are completely numb and walking a few steps is possible only with help and I'm confined to the room. The headache from this has been unrelenting all day. Bea is here by my side. She's watching movie after movie on the new Kindle Fire my brother bought me. Somehow, I'm a member of an Amazon Prime exclusive membership through the Kindle so we (I should say she) has access to an amazing library of movies, shows, music etc. One of the many things I love about Bea is that she has a unique and innately positive perspective on the world. I call it "the world according to Bea". She thinks we're sort of lucky to be in this Prime membership to have access to the free video content. I'm sure we're lucky enough to pay $40-$50 per month to get these free movies but it's just not to be dealt with today.
About 30 minutes ago my fever broke and I probably lost 1-2lbs in water weight in 5 minutes of sweating. I'm unhooked from the IV pole until about 2:00 AM at which time they will throw another IV medication on the line and after that I should be good until morning.
At one point early in the evening Bea asked me if I was bored, knowing that I never sit anywhere for more than a short while at home, but honestly today I was too sick to be bored.
Tomorrow is a brand new day!!!
At this moment there are two women going through HSCT these same weeks as myself. We were introduced by George Goss whom in an earlier post I introduced as the single greatest source of HSCT for MS information in the world. He is a good family man and a physicist from CA with the "go to" blog source for all data, studies, facilities etc. His URL is in an earlier post. He received HSCT for his Secondary Progressive Multiple Sclerosis (SPMS) 2+ years ago in Heidelberg Germany. He reports that his disease has stopped progressing 100% AND he has experienced a 50% reversal of physical deficit based on his pretransplant EDSS. George works tirelessly for the personal satisfaction of educating others about HSCT for MS and to share how well it has worked for him. I look forward to meet George one day.
While helping us all individually, George thought it would be helpful for us to be able to share the experience of planning the HSCT journey together. Melissa, Elin and I have communicated by email through our procedures just to provide positive energy from different facilities and different continents. Elin is in Sweden undergoing a myeloablative BEAM protocol and Melissa is in Israel for a nonmyeloablative treatment similar to mine. I'm happy to report both Elin and Melissa are doing great. All of our "stem cell birthdays" were this past week. Both of their blogs have maintained a refreshing positivity despite the inevitable difficulties of HSCT, and unlike most other HSCT blogs that focus usually on what went wrong during their day or week. In the spirit of my two other MS-Keteers, I will attempt to describe my day by highlighting a few positives to inform you of the daily events. Here goes:
1 I was not arrested or detained for any measurable period by local, state or federal authorities.
2 I was not hit by a bus or any other motorized/mechanized vehicle within the last 24 hours
2 None of my teeth were either forcibly removed nor did they fall out on their own
3 There were no (reported) fires in either this hospital ward or the hospital property in general
4 I did not bring a child with me into an electronic tanning machine prompting national media attention (if you're reading this outside of NY you probably won't get that joke)
As you can see clearly, this has been a very good day! A few other things did happen that I would categorize as worthy of mention. For example, a short while after completing my blog post last night the nurse determined my PICC line was clogged fuller than a Paula Dean coronary artery. This took about 90 minutes of on and off access to my PICC line to clear it. She used medication to inject and try to start the flow again. It was slightly alarming as this is the 44cm line from the inside of my right bicept and fed through to the exterior of the superior vena cava of my heart. If we can't get blood pumping from there, we gots a problem. No matter what "challenge" you encounter here at Northwestern EVERY single person is trained to maintain the same positive theme. A few examples of these are: "Every person is different and experiences HSCT in a different way", or " It's not uncommon to see this as a response from the chemo", or my favorite, "It's not something the doctor hasn't seen before".
Before my brother left last night I did feel weaker but I attributed it to the enormous amounts of energy wasted trying to will my NY Rangers past the NJ Devils in the playoff game last night. It went for nought as we were eliminated in overtime from the quest for Lord Stanley's cup. In truth, for the first time ever I wasn't terribly heartbroken as I do get a little too "wrapped up" into it and this is not a good use of limited energy. During a morning Skype with the family in NY, I could still see how angry our son Matthew was with the loss. He's the most competitive kid I know and it was funny to listen and see him talk specifically about if they had only done this or that better they would have won. I remember those days...
Most of last night was filled with nurses and techs so sleep wasn't long or restful. By 7:00 this morning I was up with fever, headache and overall weakness. The fever lasted throughout the day ranging from 99 to 102 but I was assured, "this is nothing the doctor hasn't seen before". I was given IV steroids to try to control the fever and pain and while they worked for a short while the effect didn't last and I was back up to 102 for most of the afternoon and evening. I received a transfusion of platelets due to a measurement of 14 when it should be above 20 for my position as Neutropenic meaning <0.1
Fever in general is not good for MS patients because it usually exacerbates symptoms due to the fact that fever is the body's response through a sort of hyper immunity mode to fight incoming invaders. Unfortunately, my former immune system was attacking my healthy live tissue so when an attack is launched, the shock and awe of the campaign is usually felt by worsening symptoms. Fever during Nutropenia is particularly serious because there's really nothing to attack. My blood was drawn 4 times today to check for bacterial and viral infections but there were none. My body is just reacting to the fact I have a significantly suppressed immune system and it doesn't have any clue why. It's like firemen being called to a house but can't find the fire so they just start destroying the house looking for something to do. (that one's for you JJ).
These fevers in my case cause a state of paralysis. I can stand with support just long enough to pee, my hands and feet are completely numb and walking a few steps is possible only with help and I'm confined to the room. The headache from this has been unrelenting all day. Bea is here by my side. She's watching movie after movie on the new Kindle Fire my brother bought me. Somehow, I'm a member of an Amazon Prime exclusive membership through the Kindle so we (I should say she) has access to an amazing library of movies, shows, music etc. One of the many things I love about Bea is that she has a unique and innately positive perspective on the world. I call it "the world according to Bea". She thinks we're sort of lucky to be in this Prime membership to have access to the free video content. I'm sure we're lucky enough to pay $40-$50 per month to get these free movies but it's just not to be dealt with today.
About 30 minutes ago my fever broke and I probably lost 1-2lbs in water weight in 5 minutes of sweating. I'm unhooked from the IV pole until about 2:00 AM at which time they will throw another IV medication on the line and after that I should be good until morning.
At one point early in the evening Bea asked me if I was bored, knowing that I never sit anywhere for more than a short while at home, but honestly today I was too sick to be bored.
Tomorrow is a brand new day!!!
Friday, May 25, 2012
Day + 4
The day began with our daily visit from Dr. Burt and the team. He gave me the usual nod of the head which I have now been conditioned to mean, you're fine, don't ask. My brother arrived early so he met Dr. Burt and I mentioned my brother did a lot of business in Brazil so that was all it took for them to launch into a conversation of where they have been and what are the best restaurants and hotels in Brazil yada yada yada. Hello? It's me the skinhead in the corner in the pajamas you're supposed to be talking to! Yesterday I blogged that I had a well thought out scientific theory that the problems experienced this week with fever etc. actually could be a very good sign because it confirmed my disease was still inflammatory and consequently had a much higher rate of success for this treatment. the current success rate of completely stopping any further MS progression is between 70-75%. However, if it does relapse most forms are more treatable by other immunomodulators. Before he left I did present my logic. His response?? "Ummm, not exactly..." I told him it's my theory and it's not negotiable. He chuckled and left.
Here's a picture with the Wizard himself Dr. Burt, Amy Morgan his amazingly smart, compassionate and committed Nurse Practitioner, my beautiful wife Beatriz and I think Dr. Hi but not sure. Dr. Hi has been to see me 5 times and says nothing except "hi" which I think is his name so technically he doesn't say anything except introduce himself each visit.
I slept great last night and my day today was productive. I worked, walked showered and read. This is the first day without fever and it makes all the difference to my energy. The HSCT for MS world is a buzz today because Dr. Burt published an editorial in the June MS Journal critiquing a position paper by Saccardi et al. related to HSCT treatment for MS. It's very interesting yet controversial as it reiterates his strong opposition against myeloablative protocols for MS and performing HSCT on any MS patient without definitive inflammatory disease.
My wife left mid afternoon for a shower and cleaning of the dishes of food she's brought me during the week. The stress on Bea was evident today. She's so strong and she has successfully managed this hardship with grace, courage and love without blinking once. She stayed in the apartment to relax tonight becuasue my brother is leaving in the morning and we wanted to watch the hockey game.
Below is the daily scorecard we watch until the numbers go up. Pretty sophisticated eh? I think they write the numbers in different color crayons each day... By the way they paste this on the bathroom door each morning.
The most important indicators are White Blood Cells which right now are <0.1. The other key numbers are hemoglobin to allow my blood to carry oxygen and platelets to maintain a sufficient clotting capacity. If either of the last two drop out of range I will be transfused with some O- go go juice! So far so good. Tomorrow AM at 6:00 I will start 780mcg of Filgastrin (Neupogen) in 2 shots to my lower abdomen. This medication will "assist" the roughly 1 billion infused stem cells that were infused Monday and are currently swimming around without a care in the world to start getting serious with their lives. The Neupogen sort of advises them it's time to settle down and start making a beautiful family of lymphocytes. They recommend they go somewhere like in my pelvic area and they should do it soon. It's an offer they can't refuse... I hope that wasn't too scientific for yous.
That's a wrap for the day. My brother just left and has an early flight tomorrow. I can't thank him enough for his love and support. He brought Bea and I great energy in a difficult few days. The love and support shown to me these past few months by so many is enough for 10 men.
Tiempo para hablar con Papa Dios...
Here's a picture with the Wizard himself Dr. Burt, Amy Morgan his amazingly smart, compassionate and committed Nurse Practitioner, my beautiful wife Beatriz and I think Dr. Hi but not sure. Dr. Hi has been to see me 5 times and says nothing except "hi" which I think is his name so technically he doesn't say anything except introduce himself each visit.
I slept great last night and my day today was productive. I worked, walked showered and read. This is the first day without fever and it makes all the difference to my energy. The HSCT for MS world is a buzz today because Dr. Burt published an editorial in the June MS Journal critiquing a position paper by Saccardi et al. related to HSCT treatment for MS. It's very interesting yet controversial as it reiterates his strong opposition against myeloablative protocols for MS and performing HSCT on any MS patient without definitive inflammatory disease.
My wife left mid afternoon for a shower and cleaning of the dishes of food she's brought me during the week. The stress on Bea was evident today. She's so strong and she has successfully managed this hardship with grace, courage and love without blinking once. She stayed in the apartment to relax tonight becuasue my brother is leaving in the morning and we wanted to watch the hockey game.
Below is the daily scorecard we watch until the numbers go up. Pretty sophisticated eh? I think they write the numbers in different color crayons each day... By the way they paste this on the bathroom door each morning.
The most important indicators are White Blood Cells which right now are <0.1. The other key numbers are hemoglobin to allow my blood to carry oxygen and platelets to maintain a sufficient clotting capacity. If either of the last two drop out of range I will be transfused with some O- go go juice! So far so good. Tomorrow AM at 6:00 I will start 780mcg of Filgastrin (Neupogen) in 2 shots to my lower abdomen. This medication will "assist" the roughly 1 billion infused stem cells that were infused Monday and are currently swimming around without a care in the world to start getting serious with their lives. The Neupogen sort of advises them it's time to settle down and start making a beautiful family of lymphocytes. They recommend they go somewhere like in my pelvic area and they should do it soon. It's an offer they can't refuse... I hope that wasn't too scientific for yous.
That's a wrap for the day. My brother just left and has an early flight tomorrow. I can't thank him enough for his love and support. He brought Bea and I great energy in a difficult few days. The love and support shown to me these past few months by so many is enough for 10 men.
Tiempo para hablar con Papa Dios...
Thursday, May 24, 2012
Day +3
Another interesting day had by all. To start with, last night was the best night sleep in a week!! I slept on the couch and but for vitals and blood work I slept through the night!! I have NO idea how because Tim and I ate a whole pizza AND I ate a meatball parm hero before bed. The steroids make me so hungry and while my choice wasn't the healthiest it was good. Ginos on Rush rocks!!
I moved to the chair around 7:30 AM to start on the NY Times on my new Kindle Fire from my bro and things were looking good. Before I sat down to read I decided I would clean the room. This consists of me putting The 4 armed IV pole in as close to the center of the room possible and me circling the pole with my IV line picking up as many things without tangling myself. It was a comical sight but it felt good to be productive. I think I counted 7 TV Channel guides around the room because every time one falls the nurse brings me a new one because it's contaminated and I tell her I will throw it out. Around 8:00 my lovely bride arrived with hot homemade oatmeal and Starbucks (who's better than me???) Shortly after, Dr. Burt with his entourage blew in for the morning wave and brief conversation about anything other than medicine, research, my health or my lab results! He will talk for 20 minutes about P90X and hiking in Brazil but if I ask him about lymphocytes or T-reg cells he just sort of gets this look on his face like, yeah I would like to but I just can't explain it to you... It's quite charming in fact and it does not come from a place of ego so it's fine with me
I caught up on some work and prepared for a call at 11:30. The plan was to finish work, lunch, walk, shower, more work and get back together for dinner with Tim. After the call Bea and Tim went to pick up lunch. I laid down for a few minutes and felt myself losing steam. After the PM IV antibiotics I assured myself I was just tired and needed to push myself to walk and I would feel great. 2 short laps later I pulled back into room 1569 and knew we had a problem. Sure enough 2 hours later, after a shower, the fever was back and there I was again draped over Bea's back heading for the rack! I was frustrated because the day started so strong.
The nurse paged Amy and they hooked me up to 125mgs of Solumedrol IV steroids. They continue to believe it's from the rabbit ATG. Dr. Burt has 4 patients for SCT on ward right now and Amy the Nurse Practitioner said all of us are having a bad day. Amazingly within 2 hours the fever broke and I could stand again! There is a very interesting aspect to this which encourages me greatly. Dr. Burt almost did not accept me for treatment because he was unclear if my disease was still "inflammatory" and therefore responsive to IV steroids or "neurodegenerative" which is a different form of MS and almost a different disease dominated by neuronal and axonal loss as opposed to relapsing and remitting disease exacerbated by inflammation. The fact that steroids have such a fast and positive effect on my symptoms or inflammation is very encouraging that my disease is still in a great position to be ceased AND to experience some reversal of existing physical symptoms. Now that's what I'm talkin about!! I can't wait to test my theory on Dr. Burt in the morning meeting. His answer will probably go something like this "Kevin?.... I have to go" haha!
Anyway all is well that ends well. We had a nice take out dinner from Rosebud on Rush with great pasta, salad, veal and clam sauce. Tim, Bea and I really had a lot of laughs. It's great to have the company and it's so hard on Bea because I know she feels the pain with me and it was just nice to laugh and feel good. The best laugh was the restaurant didn't accept credit cards so Tim had to pay again!
I moved to the chair around 7:30 AM to start on the NY Times on my new Kindle Fire from my bro and things were looking good. Before I sat down to read I decided I would clean the room. This consists of me putting The 4 armed IV pole in as close to the center of the room possible and me circling the pole with my IV line picking up as many things without tangling myself. It was a comical sight but it felt good to be productive. I think I counted 7 TV Channel guides around the room because every time one falls the nurse brings me a new one because it's contaminated and I tell her I will throw it out. Around 8:00 my lovely bride arrived with hot homemade oatmeal and Starbucks (who's better than me???) Shortly after, Dr. Burt with his entourage blew in for the morning wave and brief conversation about anything other than medicine, research, my health or my lab results! He will talk for 20 minutes about P90X and hiking in Brazil but if I ask him about lymphocytes or T-reg cells he just sort of gets this look on his face like, yeah I would like to but I just can't explain it to you... It's quite charming in fact and it does not come from a place of ego so it's fine with me
I caught up on some work and prepared for a call at 11:30. The plan was to finish work, lunch, walk, shower, more work and get back together for dinner with Tim. After the call Bea and Tim went to pick up lunch. I laid down for a few minutes and felt myself losing steam. After the PM IV antibiotics I assured myself I was just tired and needed to push myself to walk and I would feel great. 2 short laps later I pulled back into room 1569 and knew we had a problem. Sure enough 2 hours later, after a shower, the fever was back and there I was again draped over Bea's back heading for the rack! I was frustrated because the day started so strong.
The nurse paged Amy and they hooked me up to 125mgs of Solumedrol IV steroids. They continue to believe it's from the rabbit ATG. Dr. Burt has 4 patients for SCT on ward right now and Amy the Nurse Practitioner said all of us are having a bad day. Amazingly within 2 hours the fever broke and I could stand again! There is a very interesting aspect to this which encourages me greatly. Dr. Burt almost did not accept me for treatment because he was unclear if my disease was still "inflammatory" and therefore responsive to IV steroids or "neurodegenerative" which is a different form of MS and almost a different disease dominated by neuronal and axonal loss as opposed to relapsing and remitting disease exacerbated by inflammation. The fact that steroids have such a fast and positive effect on my symptoms or inflammation is very encouraging that my disease is still in a great position to be ceased AND to experience some reversal of existing physical symptoms. Now that's what I'm talkin about!! I can't wait to test my theory on Dr. Burt in the morning meeting. His answer will probably go something like this "Kevin?.... I have to go" haha!
Anyway all is well that ends well. We had a nice take out dinner from Rosebud on Rush with great pasta, salad, veal and clam sauce. Tim, Bea and I really had a lot of laughs. It's great to have the company and it's so hard on Bea because I know she feels the pain with me and it was just nice to laugh and feel good. The best laugh was the restaurant didn't accept credit cards so Tim had to pay again!
Wednesday, May 23, 2012
A Few Days behind...
Today is technically Day + 2 but I missed two daily posts so I'll include them in this brief post.
This morning is Wednesday May 23rd. I feel much stronger than yesterday and will hopefully walk a little today unlike the past two.
Monday was the big day (Day - 0) or as it's known here my new Stem Cell Birthday!!!!
Hematapoietic (blood) Stem Cell Transplant (HSCT) is the highlight of our journey here in Chicago to pursue and kill my malfunctioning immune system that has affected my mobility, strength etc.
I started the "mobilization" process a few weeks ago by taking Neupogen shots twice daily to help increase the number of stem cells produced in my red bone marrow and circulating in my blood in many forms but generically called white blood cells.
After 6 days of Neupogen I was attached to a machine to separate the new and circulating stem cells from my blood. The minimum collection required was 2 million/kg of my weight to provide assurance my body would have sufficient supply to return to me after the chemotherapy. The collection was successful determined by a quick sampling. The cells were then treated with preservatives and frozen.
For those considering this process with Dr. Burt or any nonmyeloablative protocol, stem cell transplant is not required to survive. As Dr. Burt explains, he harvests and transplants his patients' stem cells to reduce recovery time. Other protocols that use a myeloablative (more aggressive) protocol destroy the immune system completely and require a stem cell transplant to survive.
The team arrived with my frozen stem cells still in the cryopreserve tank. The scene took on an air of importance as people took their places verifying ID #'s, batches and preparing for the infusion. The tech began thawing my cells from the liquid nitrogen tank and a minister arrived to bless the cells before infusion. She said a very nice prayer thanking God for the physicians and researchers who have made this possible and the team to put them in today. We were also treated to a visit by Dr. Burt and Amy Morgan who stayed for the blessing and most of the infusion.
Once the cells were warm Kelly hooked them up and off they went. The first few minutes are crucial to make sure allergic reactions to the preservatives do not occur. During the transplant my blood pressure and heart rate were constantly monitored.
I felt a very warm sensation throughout my core as they reentered my body. I closed my eyes and said a short prayer asking God to please allow this process to cease the process causing the damage from this disease and to express thanks to have this opportunity so many others do not.
Twenty minutes later, the approximately 968,760,000 Hematopoietic Stem Cells were sent to battle!!
DAY + 1
The evening of Day 0 was uneventful. Overall I was feeling ok and strong enough even that Bea agreed to sleep in the apartment. I turned in around 10:00 to try to get a good night sleep. The hiccups and acid reflux I have had are still with me basically 24/7 despite best efforts of the team to eliminate them. Like so many pieces to this complex treatment, people react differently. My hiccups started almost immediately after chemo last week and have not left. On Monday evening they continued making it difficult to sleep.
When I dozed off I encountered the craziest, scariest series of dreams I have ever had. Good old fashioned heart pounding sweat through your sheets nightmares. Again, no one knows why or if any one or more of the toxic chemicals react on the body this way but this is how it has affected me. I vividly remember every detail of all of them and it made for a bumpy night.
Before long nausea and vomiting set in as well so Monday night wasn't the best. I texted Bea around 7:00 AM asking her to come and in what seemed like 8 seconds she walked through the door with homemade oatmeal and had already delivered the pasta dish she cooked the night before at 9:00 to the nurses for storage for our dinner.
Bea sat with me and I felt myself weakening by the minute. I developed fever and literally couldn't stand up. The team came in and were unclear what was causing the reaction and fever. I had also developed a rash and wasn't urinating. I asked Bea to move me to the bed and it took both hands on her shoulders holding steady to make the 4 steps. I couldn't close my hand or wiggle my toes and was really scared. For about 8 hours yesterday I was really uncomfortable. You know when you have a dream where you can't move and when you wake up you're so happy it's over? This was a day of awful dreams and then waking up and still not being able to move!
Dr. Burt checked in midday and ordered more steroids and fluids to reduce the fever. I awoke around 5:00 at the conclusion of I think Bea's 8th movie... Within a few minutes I knew I was on an upswing. Before long I moved to the chair and felt some energy return to my body. A short time later Dr. Burt came back for a third time and was please to see me in the chair with eyes open. He explained that while he can't be sure, some patients with neurological diseases have a bad reaction to the rabbit derived polyclonal antithymocyte globulin which is used because it is a drug particularly effective in killing human T-cell lymphocytes. This may have caused the fever and fever with MS patients always exacerbates symptoms. The combination was unpleasant BUT by 6:30 last evening I was sitting in front of the biggest bowl of my wife's spaghetti with meat sauce with peppers, onions and she even added some chick peas... Heaven! To continue the party I was hankering for some ice cream and we found this web site ceodeliveries.com that delivers from a huge number of restaurants. We found Bobtail Homemade hard pack ice cream. I went with the 3 scoop brownie sundae with the works. Bea went with the 2 scooper and a good time was had by all!
We saw the final of Dancing With the Stars and because Bea had the remote control on the couch she determined it was time as she says "para hablar con Papa Diso" and called it a night... It was joyous to just sit in bed with energy, able to move and stand on my own!! Ahh simple joys!!
I read for a few hours on my computer. I still had the hiccups but was content to not be delerious like earlier in the day. Finally I fell off to sleep about 2:30 and within minutes BAM BANG ZOOM was right back into those crazy chemical induced dreams sweating like crazy!
I woke up quickly and decided life would be easier with as little sleep possible the next few weeks. On and off for the rest of the night wasn't bad and slept until about 7:00.
DAY + 2
Today has been exponentially better than yesterday. My numbers are down to .01 wbc/kg of my weight so technically that's I'm at rock bottom! I managed a short walk in the AM, took a long shower and got a few hours of work in.
Around 2:00 Amy Morgan the Nurse Practitioner stopped in to see if I was still strong. The team get's so happy when they see their patients smiling!! It makes me happy too!!
My older brother Tim arrived from NJ for a visit. As much as I tried to convince him it wasn't necessary for him to come, I knew he would and I'm very glad he did. He is my best friend and a busy guy so it means a lot for him to drop everything to make the trip. And he brought me a Kindle Fire very cool!! Tonight we will try to listen to the NHL playoff game on the Internet.
This morning is Wednesday May 23rd. I feel much stronger than yesterday and will hopefully walk a little today unlike the past two.
Monday was the big day (Day - 0) or as it's known here my new Stem Cell Birthday!!!!
Hematapoietic (blood) Stem Cell Transplant (HSCT) is the highlight of our journey here in Chicago to pursue and kill my malfunctioning immune system that has affected my mobility, strength etc.
I started the "mobilization" process a few weeks ago by taking Neupogen shots twice daily to help increase the number of stem cells produced in my red bone marrow and circulating in my blood in many forms but generically called white blood cells.
After 6 days of Neupogen I was attached to a machine to separate the new and circulating stem cells from my blood. The minimum collection required was 2 million/kg of my weight to provide assurance my body would have sufficient supply to return to me after the chemotherapy. The collection was successful determined by a quick sampling. The cells were then treated with preservatives and frozen.
For those considering this process with Dr. Burt or any nonmyeloablative protocol, stem cell transplant is not required to survive. As Dr. Burt explains, he harvests and transplants his patients' stem cells to reduce recovery time. Other protocols that use a myeloablative (more aggressive) protocol destroy the immune system completely and require a stem cell transplant to survive.
The team arrived with my frozen stem cells still in the cryopreserve tank. The scene took on an air of importance as people took their places verifying ID #'s, batches and preparing for the infusion. The tech began thawing my cells from the liquid nitrogen tank and a minister arrived to bless the cells before infusion. She said a very nice prayer thanking God for the physicians and researchers who have made this possible and the team to put them in today. We were also treated to a visit by Dr. Burt and Amy Morgan who stayed for the blessing and most of the infusion.
Once the cells were warm Kelly hooked them up and off they went. The first few minutes are crucial to make sure allergic reactions to the preservatives do not occur. During the transplant my blood pressure and heart rate were constantly monitored.
I felt a very warm sensation throughout my core as they reentered my body. I closed my eyes and said a short prayer asking God to please allow this process to cease the process causing the damage from this disease and to express thanks to have this opportunity so many others do not.
Twenty minutes later, the approximately 968,760,000 Hematopoietic Stem Cells were sent to battle!!
DAY + 1
The evening of Day 0 was uneventful. Overall I was feeling ok and strong enough even that Bea agreed to sleep in the apartment. I turned in around 10:00 to try to get a good night sleep. The hiccups and acid reflux I have had are still with me basically 24/7 despite best efforts of the team to eliminate them. Like so many pieces to this complex treatment, people react differently. My hiccups started almost immediately after chemo last week and have not left. On Monday evening they continued making it difficult to sleep.
When I dozed off I encountered the craziest, scariest series of dreams I have ever had. Good old fashioned heart pounding sweat through your sheets nightmares. Again, no one knows why or if any one or more of the toxic chemicals react on the body this way but this is how it has affected me. I vividly remember every detail of all of them and it made for a bumpy night.
Before long nausea and vomiting set in as well so Monday night wasn't the best. I texted Bea around 7:00 AM asking her to come and in what seemed like 8 seconds she walked through the door with homemade oatmeal and had already delivered the pasta dish she cooked the night before at 9:00 to the nurses for storage for our dinner.
Bea sat with me and I felt myself weakening by the minute. I developed fever and literally couldn't stand up. The team came in and were unclear what was causing the reaction and fever. I had also developed a rash and wasn't urinating. I asked Bea to move me to the bed and it took both hands on her shoulders holding steady to make the 4 steps. I couldn't close my hand or wiggle my toes and was really scared. For about 8 hours yesterday I was really uncomfortable. You know when you have a dream where you can't move and when you wake up you're so happy it's over? This was a day of awful dreams and then waking up and still not being able to move!
Dr. Burt checked in midday and ordered more steroids and fluids to reduce the fever. I awoke around 5:00 at the conclusion of I think Bea's 8th movie... Within a few minutes I knew I was on an upswing. Before long I moved to the chair and felt some energy return to my body. A short time later Dr. Burt came back for a third time and was please to see me in the chair with eyes open. He explained that while he can't be sure, some patients with neurological diseases have a bad reaction to the rabbit derived polyclonal antithymocyte globulin which is used because it is a drug particularly effective in killing human T-cell lymphocytes. This may have caused the fever and fever with MS patients always exacerbates symptoms. The combination was unpleasant BUT by 6:30 last evening I was sitting in front of the biggest bowl of my wife's spaghetti with meat sauce with peppers, onions and she even added some chick peas... Heaven! To continue the party I was hankering for some ice cream and we found this web site ceodeliveries.com that delivers from a huge number of restaurants. We found Bobtail Homemade hard pack ice cream. I went with the 3 scoop brownie sundae with the works. Bea went with the 2 scooper and a good time was had by all!
We saw the final of Dancing With the Stars and because Bea had the remote control on the couch she determined it was time as she says "para hablar con Papa Diso" and called it a night... It was joyous to just sit in bed with energy, able to move and stand on my own!! Ahh simple joys!!
I read for a few hours on my computer. I still had the hiccups but was content to not be delerious like earlier in the day. Finally I fell off to sleep about 2:30 and within minutes BAM BANG ZOOM was right back into those crazy chemical induced dreams sweating like crazy!
I woke up quickly and decided life would be easier with as little sleep possible the next few weeks. On and off for the rest of the night wasn't bad and slept until about 7:00.
DAY + 2
Today has been exponentially better than yesterday. My numbers are down to .01 wbc/kg of my weight so technically that's I'm at rock bottom! I managed a short walk in the AM, took a long shower and got a few hours of work in.
Around 2:00 Amy Morgan the Nurse Practitioner stopped in to see if I was still strong. The team get's so happy when they see their patients smiling!! It makes me happy too!!
My older brother Tim arrived from NJ for a visit. As much as I tried to convince him it wasn't necessary for him to come, I knew he would and I'm very glad he did. He is my best friend and a busy guy so it means a lot for him to drop everything to make the trip. And he brought me a Kindle Fire very cool!! Tonight we will try to listen to the NHL playoff game on the Internet.
Monday, May 21, 2012
Day -1
Yesterday was a no good really bad day. This is the inevitable result of literally pumping gallons of toxic chemicals into your body over a period of 5 days. Bea and I awoke around 6:00 as ususal to plan our day. By 6:02 the plan was set and we decided to keep it similar to the day before...
We ate a light breakfast and after finishing the paper I went out for a walk in the halls. I mixed it up a bit by taking a Nascar route by circling the hall to the left. I realized quickly it wasn't going to be a record day as I was feeling a little sluggish and imbalanced. I decided to take it slow and get as far as I could. Before long I was practically trampled by another stem cell transplant patient speeeeding down the hall in the opposite direction with her IV pole flailing willy nilly. I casually moved to the side to feel her breeze by me. I admired the enthusiasm but her insistence to make eye contact and actually smile with every lap was a bit much. The flowing blonde wig was just gratuitous. I figured she was probably a newbie day -5 or -4 and after a few days she would feel like the rest of us. After a few more passes she told me she was on her last lap and I would have the track to myself. I managed a smile and wished her a good day. When I made my way around the other side of the ward I saw her going into her room and realized this was no newbie. This was the first woman I saw when we arrived earlier last week. I remember she was half sitting half lying in her bed with no hair and ashen gray. The pain and suffering on her face evident as she just stared aimlessly toward the wall. A woman that appeared to be her mother was standing over her looking down just as pained as her daughter. The realization that the woman I saw last week in such bad shape was now zipping around the hall was great inspiration.
When I returned to my room I showered up and prepared for a few more hours of nothingness. It's really difficult to read anything more than headlines and short stories as my mind just feels scrambled so I watched the playoff hockey game. Each day I wipe down the furniture with the antiseptic wipes they leave in the room. The smells in the room are difficult to tolerate combined with the bad tastes from the frequent injections of saline solution to cleanse the PICC line before blood draws.
Dr. Burt started me on strong IV antibiotics in the morning to fortify my very limited immunity. Yesterday's WBC count was 2.1. He also gave me a medication to assist with the urinary discomfort from the excessive 3x daily Lasix for the past 5 days. In the afternoon I developed a lot of pain and incredible pressure in my head and ears. It was really bad for a few hours. Vomiting a few times relieved some of the acid reflux but didn't do much for the pain and pressure in my head. The nurse called the physician and he prescribed some ear drops but when she attempted to put them in my ears it didn't penetrate my inner ear.
A very positive note was around 3:00 AM I called the nurse because my pumps were beeping and when she came in she unhooked my LAST chemotherapy injection!!!
It was a tough day but today is the Stem Cell transplant, Day 0! Onward and upward!
We ate a light breakfast and after finishing the paper I went out for a walk in the halls. I mixed it up a bit by taking a Nascar route by circling the hall to the left. I realized quickly it wasn't going to be a record day as I was feeling a little sluggish and imbalanced. I decided to take it slow and get as far as I could. Before long I was practically trampled by another stem cell transplant patient speeeeding down the hall in the opposite direction with her IV pole flailing willy nilly. I casually moved to the side to feel her breeze by me. I admired the enthusiasm but her insistence to make eye contact and actually smile with every lap was a bit much. The flowing blonde wig was just gratuitous. I figured she was probably a newbie day -5 or -4 and after a few days she would feel like the rest of us. After a few more passes she told me she was on her last lap and I would have the track to myself. I managed a smile and wished her a good day. When I made my way around the other side of the ward I saw her going into her room and realized this was no newbie. This was the first woman I saw when we arrived earlier last week. I remember she was half sitting half lying in her bed with no hair and ashen gray. The pain and suffering on her face evident as she just stared aimlessly toward the wall. A woman that appeared to be her mother was standing over her looking down just as pained as her daughter. The realization that the woman I saw last week in such bad shape was now zipping around the hall was great inspiration.
When I returned to my room I showered up and prepared for a few more hours of nothingness. It's really difficult to read anything more than headlines and short stories as my mind just feels scrambled so I watched the playoff hockey game. Each day I wipe down the furniture with the antiseptic wipes they leave in the room. The smells in the room are difficult to tolerate combined with the bad tastes from the frequent injections of saline solution to cleanse the PICC line before blood draws.
Dr. Burt started me on strong IV antibiotics in the morning to fortify my very limited immunity. Yesterday's WBC count was 2.1. He also gave me a medication to assist with the urinary discomfort from the excessive 3x daily Lasix for the past 5 days. In the afternoon I developed a lot of pain and incredible pressure in my head and ears. It was really bad for a few hours. Vomiting a few times relieved some of the acid reflux but didn't do much for the pain and pressure in my head. The nurse called the physician and he prescribed some ear drops but when she attempted to put them in my ears it didn't penetrate my inner ear.
A very positive note was around 3:00 AM I called the nurse because my pumps were beeping and when she came in she unhooked my LAST chemotherapy injection!!!
It was a tough day but today is the Stem Cell transplant, Day 0! Onward and upward!
Saturday, May 19, 2012
Day -2
Another beautiful Chicago afternoon! Sunny 75 with a cool breeze off the lake... So I'm told. I can see it but that's about it. All is well inside too. My day began at 4:00 AM with the morning drill of blood draws, vitals and weight. It appears I'm packing it on since I'm here. I've gained a few kilograms which I'm told is not uncommon considering the vast quantities of fluids being pumped in to me.
The early morning hours continue to be very productive for me. I got a lot of work done between 4-7 and then Bea woke up and we started our day together. We had a sleepover party last night but unfortunately my IV alarms went off pretty much every hour so it wasn't very restful for her.
Dr. Burt or as I like to say (the Wizard) came in this morning with no entourage I guess because it's a busy weekend and Chicago is almost on lockdown because of the NATO summit here in town. We had a nice talk. He stayed for about 20 minutes and really does his best to try to squeeze out a little bit of his massive knowledge and experience into bite size pieces for laymen like myself. He has such an interesting perspective on this treatment, physicians and healthcare in general.
My numbers are coming down as expected. My WBC went from 12 to 4.3 today. By tomorrow I should be pretty close to neutropenic which technically is <0.1. I can feel myself losing energy during the day today. After breakfast I got my walk in for the day. I completed a mile thanks to the support of the IV pole. Without the pole or assistive device I couldn't walk half the distance.
Today is the last day of Cytoxan chemo and tomorrow is the last day of rATG. Monday is Day 0 and transplant day! From there we will wait for numbers to rise.
My only problem is the worst acid reflux caused partially by the hiccups and partly from the chemicals themselves. I do feel an overall weekening as well. Bea just returned with fresh clothes to settle in for the night. I think tonight will see an early end as it's 6:00 and I'm almost done. I will eat a little fish and veggies and hit the rack.
Happy Saturday night to all! I'm treating my wife to a dinner with me in the room.
The early morning hours continue to be very productive for me. I got a lot of work done between 4-7 and then Bea woke up and we started our day together. We had a sleepover party last night but unfortunately my IV alarms went off pretty much every hour so it wasn't very restful for her.
Dr. Burt or as I like to say (the Wizard) came in this morning with no entourage I guess because it's a busy weekend and Chicago is almost on lockdown because of the NATO summit here in town. We had a nice talk. He stayed for about 20 minutes and really does his best to try to squeeze out a little bit of his massive knowledge and experience into bite size pieces for laymen like myself. He has such an interesting perspective on this treatment, physicians and healthcare in general.
My numbers are coming down as expected. My WBC went from 12 to 4.3 today. By tomorrow I should be pretty close to neutropenic which technically is <0.1. I can feel myself losing energy during the day today. After breakfast I got my walk in for the day. I completed a mile thanks to the support of the IV pole. Without the pole or assistive device I couldn't walk half the distance.
Today is the last day of Cytoxan chemo and tomorrow is the last day of rATG. Monday is Day 0 and transplant day! From there we will wait for numbers to rise.
My only problem is the worst acid reflux caused partially by the hiccups and partly from the chemicals themselves. I do feel an overall weekening as well. Bea just returned with fresh clothes to settle in for the night. I think tonight will see an early end as it's 6:00 and I'm almost done. I will eat a little fish and veggies and hit the rack.
Happy Saturday night to all! I'm treating my wife to a dinner with me in the room.
Friday, May 18, 2012
Day -3
Today we got an early start on the day again. The team came in around 4:00 AM for EKG, blood draws and vitals. I did manage to nod off again until 6:30 morning meds. After that I got up to prepare for a work call at 8:30. The blood work came back around 7:00 and my numbers are still very high which keeps me with a lot of energy. The human body is amazing. My white blood cell (WBC) count is above average as a result of the invasion of chemotherapy agents in my system so my body produces more WBCs to fight the chemo. This is a fight that can't be won (and why we're here) particularly with the escalating dosage of chemo each night. Tonight my rATG is at 125mg and will remain that way for the next 3 nights in addition to the 3,945mg of Cytoxan.
After breakfast we went for a walk and today I actually counted the laps around cell block 15 to make sure it was one mile. It felt good to walk. Because my WBC count is high there's a risk of an MS exacerbation so they pump me full of steroids prednisolone and Solumedrol 1g. This in addition to the high WBC count makes me quite jittery and as Bea said a little too hyper. We had a visit from the chaplain today and Bea said I talked for 35 minutes straight without stopping. There is a little boredom at play too.
Tonight I just ate and am ready for bed. I'm wearing the new comfy jammies Bea bought for me. I think they kicked up the Benadryl tonight to match the higher dose of rATG. Bea is sleeping with me tonight which makes me feel great. The staff here really goes out of their way to not only make the patient comfortable but family and visitors too. For her pull out bed they brought her pillows and an extra foam mattress to go on top of the cushions. My sister came back tonight and we had another nice visit before they left for the train to NY.
Tomorrow will be exactly the same as today... 14 more days of this?? Yikeeeees.
Good night!
After breakfast we went for a walk and today I actually counted the laps around cell block 15 to make sure it was one mile. It felt good to walk. Because my WBC count is high there's a risk of an MS exacerbation so they pump me full of steroids prednisolone and Solumedrol 1g. This in addition to the high WBC count makes me quite jittery and as Bea said a little too hyper. We had a visit from the chaplain today and Bea said I talked for 35 minutes straight without stopping. There is a little boredom at play too.
Tonight I just ate and am ready for bed. I'm wearing the new comfy jammies Bea bought for me. I think they kicked up the Benadryl tonight to match the higher dose of rATG. Bea is sleeping with me tonight which makes me feel great. The staff here really goes out of their way to not only make the patient comfortable but family and visitors too. For her pull out bed they brought her pillows and an extra foam mattress to go on top of the cushions. My sister came back tonight and we had another nice visit before they left for the train to NY.
Tomorrow will be exactly the same as today... 14 more days of this?? Yikeeeees.
Good night!
Thursday, May 17, 2012
Day-4
I will now transition the naming of my posts with the very official (NASA like) nomenclature identifying the countdown to, and distance from the all important stem cell transplant which will be day 0 and still scheduled for Monday May 21st. This will be the second birthday in less than a week as today marks the 43rd (and last) birthday of my misguided, autoreactive and overall mean spirited immune system.
Yesterday's hospital admission was professional and efficient as I have come to expect from this great facility. We arrived at 7:30 as instructed and within 20 minutes we were on our way to our room with great anticipation to see if we were granted one of the coveted lake front water view rooms as we had for the last 2 admissions. Unfortunately we got a "city View" which they try to make sound attractive but it's sort of like booking a caribbean vacation on the ocean and getting the "garden view" which we all know is nothing but a balcony facing the trees... I'm making a strong case for an upgrade to more prime real estate. Rumor has it the room right next to me is the creme de la creme of hospital rooms. A corner room with glass windows on two walls. Bea and I while loitering around the grand entrance snuck a peak in yesterday but couldn't see past the foyer, that's right foyer, to this corner castle! I'm pulling out all the stops to gain access, but nothing yet. If there's no movement by tomorrow I will resort to plan B which may include but not be limited to a late night visit to the current occupier's room dressed as the Grim Reaper to subtley influence him/her this may not be the best place for him/her. And donuts to the nurses in the morning...
On to more mundane issues like how I'm feeling and what 's new with treatment. Yesterday we quickly broke in my new PICC line by inserting 2 lines to each port which means 6 different combinations of fluids, medications and compounds to get this party started. We began with the chemotherapy in the afternoon and all went well. The process begins with pre-medications including 16 mg. of Zofran to prevent nausea, 3.9g of Mesna to protect my bladder from one of the chemo drugs Cytoxan and rabbit Antithymocite Globulin which is a medication derived from rabbit antibodies that have a particularly effective method of killing the autoreactive lymphocytes and more specifically the T-cell lymphocytes which are the buggers we really want to destroy. This is one of those things that makes you wonder, who and WHY would anyone ever separate rabbit antibodies and put them in a human?!?!?! I have no clue but am glad he or she did.
The treatment was fine. Before the rATG chemo they shot me up with Benadryl and Ativan which makes for a couple of hours of life in an altered dimension. It coincided with a very nice visit from my sister Maryanne and her boyfriend Pat who just arrived to Chicago for family matters with Pat, and made some time for me. It was really nice to have them visit Bea and I. I think they saw I was losing a little focus from the Benadryl/Ativan combo after a while so they left.
The night was highlighted by a conversation with my son Matthew who offered to use his phone to Skype the Ranger/Devil playoff hockey game so I could watch it through my computer. It was a very sweet gesture and a nice way to spend a couple of hours with my buddy...
The last Lasix kicked off around midnight so I fell asleep shortly thereafter and got a decent 4 hours before nurse Sophie came in at 4:00 for blood, vitals etc. She seemed to be having some trouble with the connections while leaning over me so I asked her if she was alright. She muttered "I'm having bad back spasms" She looks like she has a powerful appetite for food and I gave it a 50/50 she was going south and from there I gave it a 90/10 she was going mattress (with me in it) and not floor. Thankfully, after a minute or two she slowly steadied herself and backed out of the room. Haven't seen her since... To no one's surprise, that ended my night's sleep so I got up and managed a couple of good hours of work to catch up before the Today show. It continues to piss me off that I have to watch Matt Lauer on one hour tape delay from Chicago. It's like watching old news! But they try to trick everyone by giving the right time in Chicago... Can't fool me!
Today has been a good day. Great breakfast burritos, oatmeal and a bagel. The food isn't bad really. From there I took my first shower here after seran wrapping the portals. The bathroom has a nice clean shower and it felt great! Then after some more work I took a walk around the hallway. They say 19 times around the loop is a mile. The problem is every time I made a loop I forgot what number I was on. I know around lap 7 I realized I had completely twisted my 6 IV lines around the IV pole and it took me a good 10 minutes to untangle them in my hospital mandated gloves and gown to protect germ.Tomorrow I will take one of the markers from the white board oin my room and make a line on the wall next to the nurses station to track each loop. All the while I was beeping beeping because the battery was low annoying all fellow baldies and nurses alike. After another 8-10 laps my batteries went into super beep mode so I decided to call it quits. I walked a mile, that's my story and I'm sticking to it.
I'm now headlong into day 2 happy hour with chemo cocktails! finishing the Cytoxan and starting the rATG and Mesna. The only side effects so far are are hiccups that just won't quit. I've had these before during IV treatments. They usually last all day for a few days but stop at bed time so it's fine. Bea cooked me my favorite meal for my birthday fricase de pollo con arroz with a small carrot cake and candles and balloons. A great party!
Yesterday's hospital admission was professional and efficient as I have come to expect from this great facility. We arrived at 7:30 as instructed and within 20 minutes we were on our way to our room with great anticipation to see if we were granted one of the coveted lake front water view rooms as we had for the last 2 admissions. Unfortunately we got a "city View" which they try to make sound attractive but it's sort of like booking a caribbean vacation on the ocean and getting the "garden view" which we all know is nothing but a balcony facing the trees... I'm making a strong case for an upgrade to more prime real estate. Rumor has it the room right next to me is the creme de la creme of hospital rooms. A corner room with glass windows on two walls. Bea and I while loitering around the grand entrance snuck a peak in yesterday but couldn't see past the foyer, that's right foyer, to this corner castle! I'm pulling out all the stops to gain access, but nothing yet. If there's no movement by tomorrow I will resort to plan B which may include but not be limited to a late night visit to the current occupier's room dressed as the Grim Reaper to subtley influence him/her this may not be the best place for him/her. And donuts to the nurses in the morning...
On to more mundane issues like how I'm feeling and what 's new with treatment. Yesterday we quickly broke in my new PICC line by inserting 2 lines to each port which means 6 different combinations of fluids, medications and compounds to get this party started. We began with the chemotherapy in the afternoon and all went well. The process begins with pre-medications including 16 mg. of Zofran to prevent nausea, 3.9g of Mesna to protect my bladder from one of the chemo drugs Cytoxan and rabbit Antithymocite Globulin which is a medication derived from rabbit antibodies that have a particularly effective method of killing the autoreactive lymphocytes and more specifically the T-cell lymphocytes which are the buggers we really want to destroy. This is one of those things that makes you wonder, who and WHY would anyone ever separate rabbit antibodies and put them in a human?!?!?! I have no clue but am glad he or she did.
The treatment was fine. Before the rATG chemo they shot me up with Benadryl and Ativan which makes for a couple of hours of life in an altered dimension. It coincided with a very nice visit from my sister Maryanne and her boyfriend Pat who just arrived to Chicago for family matters with Pat, and made some time for me. It was really nice to have them visit Bea and I. I think they saw I was losing a little focus from the Benadryl/Ativan combo after a while so they left.
The night was highlighted by a conversation with my son Matthew who offered to use his phone to Skype the Ranger/Devil playoff hockey game so I could watch it through my computer. It was a very sweet gesture and a nice way to spend a couple of hours with my buddy...
The last Lasix kicked off around midnight so I fell asleep shortly thereafter and got a decent 4 hours before nurse Sophie came in at 4:00 for blood, vitals etc. She seemed to be having some trouble with the connections while leaning over me so I asked her if she was alright. She muttered "I'm having bad back spasms" She looks like she has a powerful appetite for food and I gave it a 50/50 she was going south and from there I gave it a 90/10 she was going mattress (with me in it) and not floor. Thankfully, after a minute or two she slowly steadied herself and backed out of the room. Haven't seen her since... To no one's surprise, that ended my night's sleep so I got up and managed a couple of good hours of work to catch up before the Today show. It continues to piss me off that I have to watch Matt Lauer on one hour tape delay from Chicago. It's like watching old news! But they try to trick everyone by giving the right time in Chicago... Can't fool me!
Today has been a good day. Great breakfast burritos, oatmeal and a bagel. The food isn't bad really. From there I took my first shower here after seran wrapping the portals. The bathroom has a nice clean shower and it felt great! Then after some more work I took a walk around the hallway. They say 19 times around the loop is a mile. The problem is every time I made a loop I forgot what number I was on. I know around lap 7 I realized I had completely twisted my 6 IV lines around the IV pole and it took me a good 10 minutes to untangle them in my hospital mandated gloves and gown to protect germ.Tomorrow I will take one of the markers from the white board oin my room and make a line on the wall next to the nurses station to track each loop. All the while I was beeping beeping because the battery was low annoying all fellow baldies and nurses alike. After another 8-10 laps my batteries went into super beep mode so I decided to call it quits. I walked a mile, that's my story and I'm sticking to it.
I'm now headlong into day 2 happy hour with chemo cocktails! finishing the Cytoxan and starting the rATG and Mesna. The only side effects so far are are hiccups that just won't quit. I've had these before during IV treatments. They usually last all day for a few days but stop at bed time so it's fine. Bea cooked me my favorite meal for my birthday fricase de pollo con arroz with a small carrot cake and candles and balloons. A great party!
Tuesday, May 15, 2012
PICC Line Set
Last night Bea and I returned to Chicago for the long admission and stem cell transplant. We had an uneventful trip and returned to our apartment in downtown Chicago close to the hospital. Renting this apartment was a great idea as we were able to keep most of our things here when we were in NY for the past 10 days. It was great to be able to walk when we arrived. When we left Chicago a week and a half ago, the effects of the Neupogen and the chemo and oh yeah MS had me looking like the famous old man character that one of my all time favorite comedians Tim Conway used to do on the Carol Burnett show. He played an old man whose steps despite great efforts moved him about 2 inches at a time. That was me and it wasn't pretty. The extreme weakness was caused by my very low WBC count from the chemo the previous walk. Another indicator of my better health was on the way back from the hospital this morning in our taxi, passing all of these great pubs and restaurants it made me think about happy hour, bitter cold and powder dry Grey Goose martinis and bloody red steaks and not puking like the last time I was here.
This morning we went over to the hospital to have my Peripheral Inserted Central Catheter (PICC) line inserted. This triple lumen (port) line was placed into my Basilic Vein on the underside of my right bicept. This procedure was considerably easier than the Vascular Catheter inserted into my subclavian (jugular) vein for the stem cell "harvest" (apheresis). Neither procedure was painful but the Vas Cath was much thicker and they pushed it in a little too far entering my right atrium causing arrythmia and a rapid heart rate for a few days. This PICC line is 44cm and was placed into the underside of my right upper arm and pushed to the tip of my superior vena cava just outside of the right atrium of my heart. The line was placed using ultrasound to identify vein placement and success was confirmed by a chest x-ray to make sure the line wasn't curled or in a bad spot. Now I have the 3 lumens hanging out of my arm which is colored sort of an Avatar blue from the antiseptic cleaner they used to clean the area.
Bea and I returned home after grocery shopping and but for this blog post I'm spending most of the day working remotely. The purpose of the PICC line is to deliver and extract different medications and blood respectively. It's a much more efficient system than traditional IVs with great benefits like allowing for the multiple daily blood draws with a twist of the port instead of the stick of the needle.
Admission is scheduled for tomorrow morning and will last for approximately 17 days. For my last two admissions late last month I was lucky enough to have a lake front room with great sunrise views. I called last week to try and reserve a lake front room and after a lot of laughter from the other end of the phone I was told it was luck of the draw. Hey, it never hurts to ask!! One of the nurses said to me that another patient beginning admisison tomorrow also called to request a preferred room... I think it was the Scleroderma woman that overheard my good idea to call ahead...
Bea and I are really ready to get this whole HSCT behind us. Leaving NY was more difficult this time as it's a longer trip and we just want to move on with life. Today was my 13 year old son Matthew's last Honor Roll ceremony in his middle school and I missed it... again. I will also miss his soccer game this weekend against the other undefeated team in his league. I love to watch him play. Last weekend he was captain of the team and they won 6-0. Below is Matthew with the captain band around his leg from Sunday. I'm so proud of him.
Our son Jose Miguel 11 has handled this remarkably well. He really misses his mom and also can't wait for this process to end. My parents are helping with child care this time around. Bea's mom returned to Puerto Rico last Friday after almost a month in NY. The support from family and friends continues to overwhelm us with grattitude.
Tomorrow will be day -5 signifying my stem cell transplant or "birthday" will be Monday or day 0. From there we will begin counting in positive numbers until my immunity rises to a safe level for discharge and return to NY. I will need to stay away from crowds, some foods that I love like blue cheese and rare meat and germs in general for several weeks after my return to NY. My immunity should reach safe levels between day +8 and +12. Tomorrow is also the first of 5 consecutive days of chemotherapy. The fine staff at NWMH will welcome me with a cocktail of Mesna to protect my bladder from the Cyclophosphamide (Cytoxan), Cytoxan, rATG and plenty of Lasix. It ought to be a fun day...
This morning we went over to the hospital to have my Peripheral Inserted Central Catheter (PICC) line inserted. This triple lumen (port) line was placed into my Basilic Vein on the underside of my right bicept. This procedure was considerably easier than the Vascular Catheter inserted into my subclavian (jugular) vein for the stem cell "harvest" (apheresis). Neither procedure was painful but the Vas Cath was much thicker and they pushed it in a little too far entering my right atrium causing arrythmia and a rapid heart rate for a few days. This PICC line is 44cm and was placed into the underside of my right upper arm and pushed to the tip of my superior vena cava just outside of the right atrium of my heart. The line was placed using ultrasound to identify vein placement and success was confirmed by a chest x-ray to make sure the line wasn't curled or in a bad spot. Now I have the 3 lumens hanging out of my arm which is colored sort of an Avatar blue from the antiseptic cleaner they used to clean the area.
Bea and I returned home after grocery shopping and but for this blog post I'm spending most of the day working remotely. The purpose of the PICC line is to deliver and extract different medications and blood respectively. It's a much more efficient system than traditional IVs with great benefits like allowing for the multiple daily blood draws with a twist of the port instead of the stick of the needle.
Admission is scheduled for tomorrow morning and will last for approximately 17 days. For my last two admissions late last month I was lucky enough to have a lake front room with great sunrise views. I called last week to try and reserve a lake front room and after a lot of laughter from the other end of the phone I was told it was luck of the draw. Hey, it never hurts to ask!! One of the nurses said to me that another patient beginning admisison tomorrow also called to request a preferred room... I think it was the Scleroderma woman that overheard my good idea to call ahead...
Bea and I are really ready to get this whole HSCT behind us. Leaving NY was more difficult this time as it's a longer trip and we just want to move on with life. Today was my 13 year old son Matthew's last Honor Roll ceremony in his middle school and I missed it... again. I will also miss his soccer game this weekend against the other undefeated team in his league. I love to watch him play. Last weekend he was captain of the team and they won 6-0. Below is Matthew with the captain band around his leg from Sunday. I'm so proud of him.
Our son Jose Miguel 11 has handled this remarkably well. He really misses his mom and also can't wait for this process to end. My parents are helping with child care this time around. Bea's mom returned to Puerto Rico last Friday after almost a month in NY. The support from family and friends continues to overwhelm us with grattitude.
Tomorrow will be day -5 signifying my stem cell transplant or "birthday" will be Monday or day 0. From there we will begin counting in positive numbers until my immunity rises to a safe level for discharge and return to NY. I will need to stay away from crowds, some foods that I love like blue cheese and rare meat and germs in general for several weeks after my return to NY. My immunity should reach safe levels between day +8 and +12. Tomorrow is also the first of 5 consecutive days of chemotherapy. The fine staff at NWMH will welcome me with a cocktail of Mesna to protect my bladder from the Cyclophosphamide (Cytoxan), Cytoxan, rATG and plenty of Lasix. It ought to be a fun day...
Wednesday, May 9, 2012
The Obligatory Hair Loss Post
I have read a dozen or so blogs over the past few months of people with MS that went through HSCT and it seems all of them have included the dreaded “hair loss” section of their blog… Well, I don’t want to disappoint anyone so here goes.
From an educational perspective for other MS'ers, hair loss is almost inevitable as a result of the Cyclophosphamide a.k.a. Cytoxan chemotherapy administered at the beginning of the mobilization phase of HSCT. Cytoxan is used to minimally suppress the immune system to attempt to prevent an MS relapse after the white blood count is augmented through the 6 days of Neupogen injections to harvest the hematopoietic stem cells for the transplant. Remember, MS is "believed" to be an autoimmune disease which is exacerbated by autoreactive lymphocytes which attack live healthy tissue "myelin" which causes all sorts of shall I say electrical issues... So the whole process of HSCT is this: They reduce your immune response capacity with an initial dose of Cytoxan to prevent an exacerbation, then strengthen your immunity with the Neupogen, then ablate it after the harvest with high dose chemotherapy for several days and then build it back up again by reinfusing your harvested stem cells. These new stem cells will engraft in your bone marrow and grow into new and hopefully not misguided lymphocytes like before.
For those of you that don’t know me personally, for a 42 year old male I have a very full head of hair. A head of hair so thick it’s usually the subject of many jokes from my friends and family about how I manage so much thick, voluminous, beautiful hair.
From an educational perspective for other MS'ers, hair loss is almost inevitable as a result of the Cyclophosphamide a.k.a. Cytoxan chemotherapy administered at the beginning of the mobilization phase of HSCT. Cytoxan is used to minimally suppress the immune system to attempt to prevent an MS relapse after the white blood count is augmented through the 6 days of Neupogen injections to harvest the hematopoietic stem cells for the transplant. Remember, MS is "believed" to be an autoimmune disease which is exacerbated by autoreactive lymphocytes which attack live healthy tissue "myelin" which causes all sorts of shall I say electrical issues... So the whole process of HSCT is this: They reduce your immune response capacity with an initial dose of Cytoxan to prevent an exacerbation, then strengthen your immunity with the Neupogen, then ablate it after the harvest with high dose chemotherapy for several days and then build it back up again by reinfusing your harvested stem cells. These new stem cells will engraft in your bone marrow and grow into new and hopefully not misguided lymphocytes like before.
For those of you that don’t know me personally, for a 42 year old male I have a very full head of hair. A head of hair so thick it’s usually the subject of many jokes from my friends and family about how I manage so much thick, voluminous, beautiful hair.
For those of you that do know me personally, please do not tell anyone that doesn’t know me that I actually have been balding for several years and if chemotherapy didn’t force a massive hair design reconstruction I would have been facing a serious comb over situation to rival the one and only Donald Trump!
Sad but true, I really have been thinning for a while. Some of us MS'ers blame it on Solumedrol, others blame it on Gilenya, I blame it on my Uncle Mike. I remember as a small boy seeing my uncle’s shiny bald head and saying, that must be awful to live like that...
I have been creative with my coiffeurs to cover a little here and there and I managed the best I could but in truth it was time to face reality and make an investment in the future, the electric shaver.
Before treatment began I was sure that at the first sign of hair loss I would run to the barber, lather up the old cue ball and straight razor it all off. It’s a little harder than I thought. I find myself looking in the mirror a little longer each day admiring what once was and wondering what will be if and when it comes back. I have heard too often that it grows back curly after chemo. Curly!?!? Curly like I’ll have to buy a hair pick from the 70’s and 80’s??? Or worse, curly like that which grows in the southern hemisphere of one’s body???
I’m ignoring it the best I can, maybe it will stop. Yes the pillow in the past few days wasn’t pretty and the bathroom sink needs a quick rinse. It reminds me of one Christmas when I was a kid. We bought a defective Christmas tree and immediately after we finished decorating it the needles started to fall off by the thousands. We all just sat there listening to the needles hit the floor like a steady rain trying to ignore it. By the next morning we had a real Charlie Brown Christmas situation on our hands. We finally had to resort to the 30 year old artificial tree we had in the basement and start from scratch. I recall it was missing a few “arms” but it did the trick.
I will try to hold out until Saturday as I have a big meeting in Baltimore on Friday. Also, I’d rather not go out for lunch from the office and all of a sudden come back a skin head! Not very Presidential. I’m carrying a dust buster with me and every hour or so I shut my office door and give a once over of my desk and chair!
So there you have it, my edition of the obligatory “hair loss” section of my blog of this very very weird experience…
Thursday, May 3, 2012
Harvest Complete
Thank you for all of your support here and in Facebook. It helped a lot through what turned into a pretty difficult week. I can honestly say I physically and emotionally could not have done this without my wife Beatriz. The last 3 days were really difficult and she cooked, carried, wheeled and willed me through this.
We finished the harvest yesterday successfully collecting 11.7 million hematopoietic stem cells (per Kg of my weight). These stem cells were collected and will be frozen in anticipation of the lymphoablative chemotherapy and stem cell transplant beginning May 14th. This completes the first phase of the 2 step process and my wife and I will travel tomorrow AM back to NY. We're very much looking forward to getting home to our kids!
The end of last and beginning of this week was great. Each day we were walking, shopping and seeing parts of the city. On Tuesday afternoon we went to a Chicago landmark Gene and Georgetti's steakhouse in the river north section and we split their famous garbage salad and a huge hunk of filet mignon. With all of the blood they were sucking from me I thought it wise to replenish with some great wet aged prime beef from this great spot.
I had started my daily Neupogen shots Saturday AM and really had not felt any effects. Unfortunately, Tuesday evening serious pain set into my lower back and I spiked a fever of 101. I spoke with Amy Morgan who is a Nurse Practitioner on Dr. Burt's team but is smarter than most doctors I know and I have been working with doctors for almost 20 years in my profession. She advised me to come back to the hospital for IV antibiotics.
My wife and I made the trek down to the ER around 9:30 Tuesday night. They were very nice and because I was presumably neutropenic meaning without an immune system from the chemo the previous week they made me wear a mask and put me in a separate room until they could find me a bed in Prentice Women's Hospital for admission.
Around 1:00 AM I convinced my wife to take a cab home so at least one of us could rest. She obliged my wishes reluctantly, grabbed one of the many cabs waiting outside the hospital and she was home in 5 mins. I was admitted around 1:30, saw the doctor around 2:30, did a round of IV antibiotics and caught some shut eye between 4-6 when we did the morning vitals and blood draw. There's really no such thing as sleeping in a hospital, there's just a part of your day when your eyes aren't open.
Around 8:00 AM Wednesday Dr. Burt and Amy came in to see me. I still had fever but it was lower. I indeed was neutropenic so under the better to be safe than sorry we made the right call the night before. They confirmed the harvest was still on track and I could be discharged later Wednesday.
7:00 AM Thursday we reported to the Interventional Radiology dept for the insertion of the Central Vascular Catheter for the collection of the stem cells. The procedure was not painful at all but it was more serious than I thought... I just didn't think too much about it. Several people explained the process thoroughly, then they wheeled me into the procedure room and the physician went to work. This is basically a tube, in my case 20cms which is placed inside my subclavian or as we know it the jugular vein and fed down to right above the right atrium of my heart. They use local anesthesia before the incision and the process takes 5 minutes. They use ultrasound technology to guide the physician down the vessel. I did experience a few heart palpitations which concerned me but after 4-5 seconds they stopped. I learned today that they actually wait for these palpitations (determined by heart monitor I was attached to) so the physician knows he's inside my heart...hmm... They actually have several videos of this procedure on YouTube that I recommend you watch after this thing is pulled out of your chest.
From there we did more blood work so they could estimate my stem cell count. Oh by the way, remember a few posts ago when I was all goobly gobbly about using a wheel chair for the first time?? Yep, not a problem anymore... I can't get my ass into a wheelchair fast enough when I enter a hospital these days. My only embarrassment is I have to carry my wife's purse which is really more like a large duffel bag! Other women compliment her on it all the time so I guess it's fashion but when we have to fish my tiny wallet for my ID and insurance card at every stop its quite the adventure. I look really great with my cane and my wife's purse on my lap cruising the halls of NWMH.
All the blood work was fine and around 10:30 they hooked me up to the Apheresis machine which collects my blood at a very rapid rate, runs it through a centrifuge which separates the blood into plasma, stem cells and red blood cells. It then returns blood back to me through one of the other of the 3 lumins or ports which are attached to the Vas Cath. The high speed at which the collection is done could not be done through a regular IV line.
The only affect I felt from the process were tingling in my lips. This is common for the process. They said I may also experience significant vibration throughout my body which I did... I have MS, I vibrate 24-7 from head to toe!
3.5 hours later we were done. Then we waited another 90 minutes for them to count them 1, 2,3... When we returned they reported 11.7 million stem cells per kg of my weight. The requirement is only 2 million so we had plenty of extras. My assumption is they will infuse me with the entire amount after the chemo as it may reduce my recovery week after next. One interesting development with this process also is that my LDL cholesterol count currently is 321 which is high for overall cholesterol not just the LDL. I'm informed this is normal and will come down, yikes!!!
Then it was time to take the Vas Cath out. At this point I must admit I did get a little nervous. Don't get me wrong, Nurse Heather was really great throughout the entire day but she was about to pull a 20 cm line from my jugular vein!!! I mean, doesn't that sound a little serious?? Of course visions of blood squirting all over the room and Heather holding my vein like a garden hose screaming "I can't stop it, it's too strong and my wife screaming don't get it on my purse!!!" were unavoidable...
She convinced me it would be fine and I really didn't have much of a choice but to believe her, unless I chose to leave the hospital with the line in my chest and live the rest of my life with the 3 lumins sticking out of my neck requiring me to buy all new shirts and suits to accomodate my new jewelry. It was tougher than you think... The lumins look exactly like the red, yellow and white plugs that go from your kids' Play Station 2 into the TV.
My wife was really ready to leave so she talked me off the ledge and Heather went to work. They did make one capitulation at my request that Heather and Bea briefly stop talking about kids while she had the main vein in her hand. It went fine and after direct pressure for about 10 mins she placed 2 criss cross butterfly style bandages on the wound and then a pressure bandage above that which I will remove shortly (after 24 hours).
From there we went home. We slept well although I did sweat all night long and my heart rate today is still about 30% higher than my normal resting bpm. I spoke with Kim Yaung earlier and she thought I was just dehydrated. It is better now and my energy is returning so off we go tomorrow!!!
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