Well that didn't long! Back by popular demand from an early blogging retirement I will give you an update quicker than anticipated. Actually, there was no demand, at all, but there is an update that I will share with you.
Earlier in the week while in Chicago (or last week) depending if you consider Sunday the last or first day of the week (I'm still on the fence), I began experiencing a condition called L'hermitte's Sign which is defined as: Sudden transient electric-like shocks extending down the spine triggered by flexing the head forward. Due to a disorder such as compression of the cervical spine (the portion of the spinal cord within the neck).
The sign is named for a French neurologist, Jean Lhermitte (1877-1959) who originally described it in a patient with multiple sclerosis (MS). It is a classic sign of MS.
I can recall many years ago experiencing this for the first time. It was before my diagnosis and I had no idea what to think of these strange, painful sensations shooting down my arms and legs. I remember experiencing these most while driving and I was convinced there was a loose wire somewhere in my seat that was shocking me. This feeling is exactly like touching a live wire.
I have had Lhermitte's on and off since my diagnosis but in recent years the condition had lessened in its severity and frequency. During treatment in Chicago I felt it on a day I wasn't feeling great. I informed Dr. Burt and he responded Lhermitte's was not something he's seen related to HSCT.
This past Friday I had a few episodes in my right leg but by yesterday morning I was experiencing frequent, painful bursts of electricity down my right side through to my right foot. I was standing in the kitchen yesterday morning when an episode occurred so powerful I spilled my cup of coffee on the floor. Not only is it painful but it disrupts my equilibrium requiring me to reach for something to maintain my balance. I began to get vey anxious as this was the last thing I had expected and fears of a new and active MS lesion is my worst nightmare, particularly so soon. I emailed Dr. Burt and of course within 10 minutes he responded reiterating he has not seen this as a result of HSCT. He did ask me what medications I had stopped taking since treatment.
Last fall when I had found a Neurologist accepting my new health plan he prescribed for me a Selective Serotonin Reuptake Inhibitor (SSRI) or crazy pill as I call it. He said his MS patients react well to antidepressants reducing pain and also assisting with depression which is part of MS. I had never taken medicine for depression and was hesitant but truth be told it was a difficult period. My health was spiraling down, we had no house, we were living in a hotel, we had to change our son to a second new school since arriving to NY because we had to leave our apartment and in short, I was depressed. He prescribed Cymbalta and I rationalized it to say it would relieve the pain associate with MS... A few weeks later I manned up and took the mild dose on a Monday morning and went off to work. These are "time release" capsules. I remember around 12:30 in the afternoon I was in a meeting with my sales management and, it released. I felt immediate anxiety at a very high level. Some of these medications make your symptoms worse for a period before improvement is seen, this apparently was one of them. I was one and done with Cymbalta and felt the effects for a few days after. A month or so later I tried another flavor of SSRI because I still had "pain". I tried Pristiq at a very low level and my body tolerated it well and after a few weeks of slightly elevated anxiety I felt better. Of course by this time our lives had settled considerably domestically as we were in our home, the kids were happy in school and as the saying goes "happy wife, happy life". I didn't see a huge benefit from the Pristiq and looked forward to stopping after HSCT when I had time away from work to absorb the side effects of coming off an SSRI. During my hospital stay I was taking so many pills in addition to IV treatment I just started skipping days of Pristiq. So Dr. Burt, I stopped taking Pristiq.
Mom and Dad were packing up yesterday morning and sadly my goodbye and thank you was brief and not nearly sufficient for how much they helped over the past several weeks as I headed upstairs to rest in bed hoping this would stop. I rested for a few hours and the episodes reduced in frequency.
Matthew had a soccer game in the afternoon so off we went. It was great to be outside in the sunshine. I took my cane to assist when the episodes hit my leg which were not infrequent. Matt's team won 4-2 and coincidentally one of my cousin Tom's sons was refereeing Matt's game and the other son was playing on the adjacent field. It was nice to spend time with him and my aunt and uncle who came to watch Conner's game.
I slept very well last night as my routine is normalizing and my body is clearing from toxicity. This morning I awoke and carefully walked around and downstairs trying to avoid leg problems. Within an hour the L'hermitte's attacked hard and fast. What is normally predictable based on the movement of my neck and the consequential strain on my spinal cord was now random, frequent and painful not to mention scary. I was having them every 5 minutes or so.
This entire post is pretty negative BUT in the spirit of maintaining some positive note to each update here it is. Because I knew it was L'hermitte's I looked it up on the Internet to learn more. Within the first paragraph it says this can be caused from MS (we knew that) but it also could occur during or after chemotherapy or upon sudden discontinuation of SSRI!!
This obviously elated me as two of the potential causes for this were recent, identifiable and not a probable new MS lesion or exacerbation!! The only better news I could have read would be that these are guaranteed to stop within a short period followed by several years of increased sexual performance! Sadly they were both missing.
Dr. Burt sent me an email today to see how I was feeling. I responded that the episodes are more severe and frequent in the morning but less in the afternoon. I told him what I read on Wikipedia regarding the correlation of chemotherapy, SSRI sudden discontinuation and L'hermitte's. Based on all I have described about Dr. Burt to you thus far, how do you think he would respond to me self diagnosing based on Wikipedia??? Yep, you guessed it, Poppycock! He actually told me earlier in the week about the SSRI discontination potential but completely discounted the potential correlation with chemotherapy. He said he's well aware of the correlation between the two but not with the chemo drugs he uses for autoimmune disease... Ok, I'm in no position to question the wizard.
He asked me to page him. When we spoke he told me he has never seen this before and he thinks it could be the SSRI issue. He told me he did research today whether L'hermitte's could be "some sort of weird pathway to PML based on my Tysabri, Gilenya history". Those of us in the MS world cringe when we hear any mention of Progressive Multifocal Leukoencephalopathy (PML) from a physician. This is a rare and progressive neurological disease. I know what you're thinking, don't you already have a rare and progressive neurological disease?? Yes I do but this one is MS on steroids. PML is fatal in about 50% of cases and causes rapid, severe and permanent disability in the unlucky half. The good news is he didn't find any connection between the two. I asked him if I should get an MRI and he didn't recommend it at this time but to keep him posted. Again, kudos to his amazing dedication to his patients reaching out to me on a Sunday, researching the issue and then initiating a phone call? Unheard of.
While I didn't anticipate posting so soon after announcing my slow down, I managed quite the recap of just two days. In truth I wasn't planning to slow down the posts so quickly I was just a little annoyed because my readership was dropping like a rock in China (I receive stats of readership by country daily) and I was getting frustrated (joke).
Sunday, June 3, 2012
Friday, June 1, 2012
Day + 11
Today was a great day! What a wonderful treat to wake up to bright sunshine, beautiful green trees and most important doing it in my own house. The night wasn't great for sleep. I think it will take a little time to rid my body of all the drugs but coming downstairs around 6:00 to my own coffee, my own newspaper and morning TV shows was priceless.
My day today was dominated by overwhelming fatigue. I can't believe how powerful the effects of HSCT have been on my body. In a day that did not have any other pain or major symptom, the fatigue was unrelenting. A trip up the stairs required rest!
It was very nice to sit outside and feel the breeze and just rest and share with Mom and Dad before they head home to SC tomorrow. I spoke with Kim from Dr. Burt's office who called just to check in to see how I was feeling and confirm I had the plan set for weekly lab draws and my medications. Their care and commitment is so appreciated.
Bea and I got a lot done around the house. Lot's of appointments for next week: Pool, lawn, roof, AC, garage door. Next week will be a busy week. I also got a lot more work done than I have in over a week.
Despite the fatigue I did notice a couple of cool things. On a weekly basis I have to sign about 150-200 checks for work. This task had become increasingly difficult in recent months as the numbness in my right hand was not only making it difficult to turn the stack of checks one at a time but the fatigue in my hand made holding the pen difficult. Today I could actually feel the edge of each paper with my finger to flip the checks one by one! The fatigue from signing was about the same. Also, coming down the stairs in my house I actually felt my left leg bend a little bit! It wasn't completely locked up with spasticity requiring unnatural gyrations in my back to find the next step. It was slight and the fatigue was so strong I was moving very slow but it was there.
Unfortunately the next week will be cool and cloudy so I'll need to wait to tan my cue ball. Tomorrow the big item on the agenda will be Matthew's soccer game and a lot of rest.
My future posts will be limited to days with significant updates to report. I hope this journal serves to help at least one other MS patient considering this aggressive procedure to stop their MS. I have enjoyed writing this as it has brought feedback from many I love and it was those messages from you that helped me get through the difficult days.
If anyone has any questions regarding HSCT for MS please do not hesitate to contact me. The best way to reach me is kevmgrace@aol.com
Thank you again for all of your support!
My day today was dominated by overwhelming fatigue. I can't believe how powerful the effects of HSCT have been on my body. In a day that did not have any other pain or major symptom, the fatigue was unrelenting. A trip up the stairs required rest!
It was very nice to sit outside and feel the breeze and just rest and share with Mom and Dad before they head home to SC tomorrow. I spoke with Kim from Dr. Burt's office who called just to check in to see how I was feeling and confirm I had the plan set for weekly lab draws and my medications. Their care and commitment is so appreciated.
Bea and I got a lot done around the house. Lot's of appointments for next week: Pool, lawn, roof, AC, garage door. Next week will be a busy week. I also got a lot more work done than I have in over a week.
Despite the fatigue I did notice a couple of cool things. On a weekly basis I have to sign about 150-200 checks for work. This task had become increasingly difficult in recent months as the numbness in my right hand was not only making it difficult to turn the stack of checks one at a time but the fatigue in my hand made holding the pen difficult. Today I could actually feel the edge of each paper with my finger to flip the checks one by one! The fatigue from signing was about the same. Also, coming down the stairs in my house I actually felt my left leg bend a little bit! It wasn't completely locked up with spasticity requiring unnatural gyrations in my back to find the next step. It was slight and the fatigue was so strong I was moving very slow but it was there.
Unfortunately the next week will be cool and cloudy so I'll need to wait to tan my cue ball. Tomorrow the big item on the agenda will be Matthew's soccer game and a lot of rest.
My future posts will be limited to days with significant updates to report. I hope this journal serves to help at least one other MS patient considering this aggressive procedure to stop their MS. I have enjoyed writing this as it has brought feedback from many I love and it was those messages from you that helped me get through the difficult days.
If anyone has any questions regarding HSCT for MS please do not hesitate to contact me. The best way to reach me is kevmgrace@aol.com
Thank you again for all of your support!
Thursday, May 31, 2012
Day + 10
I'M HOME!!!
Nothing like home sweet home. My numbers climbed again overnight and this morning I was discharged. I feel so much better than yesterday. Last night they stopped the IV antibiotics so I was not connected to the IV pole. I slept very well. The nurses came in early today very happy to report the nightly labs came back very strong and were very confident I would be out early today.
Dr. Burt came in around 9:00 to say I was free to go, shook my hand and wished me well. I thanked him on behalf of Bea and I and he left. I never found a way to connect with him but I don't think if my admission were 100 days that would have changed. He's a brilliant scientist with a passion for his work to help people beat their diseases. He practices a different kind of medicine than most of us are used to. He doesn't bill by the visit or procedure. He thinks globally and it's fascinating to watch. He lives on studies and outcomes and then does what he has proven will work to help as many people possible with a growing number of autoimmune diseases. He works 24-7 and I'm grateful for all that he does.
Bea did the Amazing Race journey today taking the 6:00 AM flight to Chicago to meet me at the hospital for discharge around 10:00. She packed my bags, made sure she had all of the discharge paperwork and out the door we flew. We raced back to the airport to try to catch the 12:45 to Baltimore then on to Islip. Our original flight wasn't until 6:50 PM arriving at 10:00 this evening. We were met with the grim news that the 12:45 was overbooked by an amount so high they wouldn't recommend putting our names on the stand by list Grrrrr. I wasn't afraid to use the "can't you see I've had a rough week" trick with the hospital mask, cue ball head and the best worst post chemo face I could muster, it wasn't hard. Even though she gave us the bad news she kept typing away. Whenever they keep typing you always have that glimmer of hope. Although, too often a seat change request for me results in 18 minutes of typing only to result in the same 37E I walked in with...
So I was in fact getting tired and it didn't appear we were getting anywhere. She printed the boarding passes for the 6:50 and the stand by passes for the earlier flight. I thanked her for all of her time. We began the wheeled journey to the gate which bypasses the security line :)). We realized we didn't check our luggage so we were about to lose a few of our personal liquids. I had my favorite 7 oz L'occitaine hand cream but it was only half full. He wasn't buying my logic so down it went. We arrived at the gate to check in for stand by and suddenly a camera crew arrived to video the ticket agent and a Supervisor on scene. Bea was handing the agent the paperwork and suddenly she was in the middle of a shoot. I couldn't follow much as I was again trying to impress upon them the need for me to arrive home by letting my head fall back and to the side in my wheelchair with my eyes barely more than half open. Amazingly, within 2 minutes of furious typing 2 tickets popped up to Baltimore and then on to NY!!!
As they were dumping me by the gate the producer chased down Bea to sign a disclosure form to use the footage for the show "On the Fly" on TLC which apparently is a reality show about the trials and tribulations of flying Southwest. After Bea agreed he came to me because I was in the background of my wife's scene... I respectfully declined.
Our flights were fine. Despite very full flights Bea and I managed to keep the extra seat in our row empty. I wonder why??
It was really great to arrive home. Mom and Dad were cooking chicken parmigiana for Jose Miguel and we had a nice meal. I'm really grateful to have ended this part of the process and soooooo looking forward to my bed. Good night!
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!
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.
Subscribe to:
Posts (Atom)