The last several days since discharge have been uneventful in the hotel. It has been nice to get some quality uninterrupted sleep, but I still wake up every four hours or so due to night sweats. I haven't had the energy or desire to leave the room much since my discharge and venture out into the cold air, which has been really depressing. However, today the weather finally improved to almost 60 degrees, and it was nice to be able to shed some of the arctic gear and get outside. I had my lab work drawn in the morning and my follow up appointment in the afternoon. In between my labs and appointment I walked approx 1-2 miles and it felt great!
Over the next several months my immune system will continue to develop and become more mature. Right now my immune system is just like a newborn baby's. My doctor will monitor my labs very closely over the next 6 months to make sure I'm headed in the right direction. I'll remain on antibiotic, antiviral and anti-fungal medicine for 6-12 months as a precaution. If I get sick or my labs are abnormal, then my doc may have to adjust my meds to help my young immune system defenders fight off infection.
During my follow-up appointment today my doctor said that I'm doing VERY well and to take things slowly during the initial recovery period. I intend to exercise regularly beginning with a crawl, walk, and run mentality. I intend to slowly do more each day, and quit when my body tells me to stop. My doc said it's a 2-6 month initial recovery period depending on the individual, but I'm optimistic that I be back in the game sooner rather than later.
My bags are packed and I'm headed back to Hawaii tomorrow - woohoo!!:). I'm very much looking forward to leaving this cold weather in my wake. I'll return in six months for 2-3 days of follow-up tests that will be compared to my pre-stem cell tests to measure improvement.
Thanks to all my family, friends, and co-workers for your support during this difficult time. All the calls, cards, emails, care packages etc. were much appreciated. My next post on this blog will be after my six month follow-up, unless I experience significant changes over the next several months.
Wednesday, March 16, 2011
Thursday, March 10, 2011
Transplant Day +10 (Hospital Discharge Day!!!)
The pain in my legs and back subsided throughout the evening and will hopefully go away over the next several days. My most recent lab report this morning indicated my white blood cell count jumped to 4.5, which is well above the hospital discharge requirement of 1.0. All other blood counts continue to rise towards normal ranges.
I was disconnected from the IV pump machine at 8:30am which was such a good feeling. My doctor went over my discharge instructions around 2:00pm, and shortly after the nurse removed my PICC line and I was discharged from the hospital!!
My brother and I took a cab to my nearby hotel, and after settling into my room, my brother picked up my meds from the nearby Walgreens. Later in the evening my brother picked up some food from the nearby P.F. Changs. It was absolutely fantastic to eat something other than hospital food.
I look forward to an evening in a real bed without any interruptions.
I was disconnected from the IV pump machine at 8:30am which was such a good feeling. My doctor went over my discharge instructions around 2:00pm, and shortly after the nurse removed my PICC line and I was discharged from the hospital!!
My brother and I took a cab to my nearby hotel, and after settling into my room, my brother picked up my meds from the nearby Walgreens. Later in the evening my brother picked up some food from the nearby P.F. Changs. It was absolutely fantastic to eat something other than hospital food.
I look forward to an evening in a real bed without any interruptions.
Wednesday, March 9, 2011
Transplant Day +9 (Engraftment -- Woohoo!!!)
The pain in my legs and back has steadily increased over the past two days due to the Neupogen shots jump starting my stem cell engraftment process. The pain was manageable with low dose dilaudid yesterday, but today they had to up the dose to keep me from crying like a baby. Even with the increased dose, I'm still feeling intense pain in my lower back and legs, especially as the medicine wears off. It is now 10:30pm and my last dose was at 8:50pm. I'm hoping the pain subsides soon, or at least doesn't return until I can take my next dose at 11:50pm. Slight fevers still continue along with the pain, but drinking fluids and the cold wash cloth on the forehead have been doing the trick.
My most recent lab report came back at 6:00pm today and put a nice big smile on my face. My white blood cell count was 1.5 and all other blood counts were within hospital discharge limits - woohoo! No more Neupogen shots, platelets, blood transfusions, PICC line, waking at 2:00am for vital signs, etc:)
I will be discharged sometime tomorrow and stay at a hotel nearby with my brother, Carl, until my appointment next Wednesday the 16th. It will be a lifesaver having him around as my caregiver, as I still fatigue very quickly and require assistance with lifting, walking around, running errands, etc.
I plan on flying back to Hawaii on 17 March and can't wait to give my two little daughters, Wendy and my entire extended family hugs and kisses!
My most recent lab report came back at 6:00pm today and put a nice big smile on my face. My white blood cell count was 1.5 and all other blood counts were within hospital discharge limits - woohoo! No more Neupogen shots, platelets, blood transfusions, PICC line, waking at 2:00am for vital signs, etc:)
I will be discharged sometime tomorrow and stay at a hotel nearby with my brother, Carl, until my appointment next Wednesday the 16th. It will be a lifesaver having him around as my caregiver, as I still fatigue very quickly and require assistance with lifting, walking around, running errands, etc.
I plan on flying back to Hawaii on 17 March and can't wait to give my two little daughters, Wendy and my entire extended family hugs and kisses!
Monday, March 7, 2011
Transplant Day +7
My recovery has continued to progress in the right direction over the past couple of days. I've experienced an increase in body pain from the daily Neupogen shots, but this is actually a good sign because it tells me the Neupogen is working and engraftment is right around the corner. I also had a slight fever again today that only lasted a couple hours. My doctors said it was probably caused from an allergic reaction to the blood transfusion, or possibly the Neupogen shots. However, since fevers can be caused by more serious things, such as infection, they always draw blood cultures when I spike a fever since I have no immune system.
The new room has made a big difference. It's much more comforting to lay in bed with a spectacular view of Chicago, rather than looking at four dark walls.
I've continued to receive platelets daily and today I received two bags of red blood cells. My platelets and blood counts will remain low until I engraft, and then slowly start to rise. I'll continue to receive platelets and red blood cells as required in the next few days to maintain my numbers within acceptable limits.
My appetite continues to increase and I'm able to eat more every day. Nausea is a thing of the past, but fatigue continues as expected and will be something I'll have to deal with until I'm fully recovered.
My brother is staying with me in the hospital now and it has been great catching up with him. He is doing a great job and I appreciate him traveling all the way from Florida to take care of me.
The new room has made a big difference. It's much more comforting to lay in bed with a spectacular view of Chicago, rather than looking at four dark walls.
I've continued to receive platelets daily and today I received two bags of red blood cells. My platelets and blood counts will remain low until I engraft, and then slowly start to rise. I'll continue to receive platelets and red blood cells as required in the next few days to maintain my numbers within acceptable limits.
My appetite continues to increase and I'm able to eat more every day. Nausea is a thing of the past, but fatigue continues as expected and will be something I'll have to deal with until I'm fully recovered.
My brother is staying with me in the hospital now and it has been great catching up with him. He is doing a great job and I appreciate him traveling all the way from Florida to take care of me.
Saturday, March 5, 2011
Transplant Day +5
Yesterday (Transplant Day +4), went well, overall. My platelet and blood cell counts are dropping, as anticipated. The fatigue continues as expected. Merely eating is taxing, and I have to eat more slowly than normal as even digestion is energy-consuming. Heck, even bowel movements can be exhausting!
The doctors prepared me by telling me to expect most of what I am experiencing, so I understand that it is all part of the process, and I try to remind myself that this is all "normal" and that "this too shall pass."
Today, my friend's, Mike and Mario, came to visit and delivered a fresh load of laundry, which cheered me.
I think I am back on track, for the most part, with my meals, and over the nausea, which is fantastic.
The rest of the evening was uneventful. 'Started to watch a comedy, and fell asleep for the night. I think my body may finally be starting to fall into a routine, and be adjusting to a few hours of sleep here and there throughout the night, with a nap during the day.
This morning, (Transplant Day +5), I was visited by a team of about 10 doctors from around the world who administer Dr. Burt's stem cell protocol in their countries. They were here at Northwestern Medical Center for a one day Stem Cell Conference, hosted by Dr. Burt. They were very kind and assured me that I chose the right treatment, stating that the majority of their patients are trying to get the same procedure. They were quite impressed with the research I have done on my own, and asked if I would be willing to correspond with some other patients to share my experience. I feel very fortunate to be here getting this treatment.
Due to my low platelet count, I received my first bag of platelets today, and anticipate receiving red blood cells within the next few days. I also started receiving Neupogen today, which is a growth factor given by injection in my abdomen, to help increase the rate of stem cell production. Side effects of Neupogen can include fever, achiness, and bone & joint pain, all of which I have begun to experience, and can take pain medication as needed. 'Just to be on the safe side, blood cultures were drawn due to my slightly elevated temperature to rule out any possible infection.
My brother, Carl, arrived from Florida today and will be taking Wendy's place after she leaves to go back to Hawaii tomorrow. It is really good to see him, as I hadn't seen him in nearly three years. We will have a lot of catching up to do. Wendy has provided great support while she's been here, and I don't know how I would've gotten through the past 11 days without her. A quality, loving, caregiver is a crucial component of the stem cell transplant process. I will miss her.
I also got my daily call from my girls, which was the highlight of my day. Taylor, my youngest, told me all about her modeling photo shoot, which was a huge success. She is on track for her beauty pageant in May, which I am looking forward to attending. She showed me her new dresses via Skype and has been diligently practicing piano for the talent portion of the competition. Alex, my oldest, was very excited about winning first place in her speech competition, which will take her to the State Finals at the Hilton Hawaiian Village next month. I am so proud of both of them and the wonderful young ladies they are growing up to be. They make me so happy.
Oh, I almost forgot..... tomorrow, I am moving to a much bigger, corner room, in which two of the adjoining walls are comprised completely of glass windows. This provides a partial lake view as well a spectacular view of the city. This is a much welcomed move as the room I am currently in is a broom closet in comparison, with only one tiny window, which I refer to as "solitary confinement". I guess all those boxes of macadamia nut candies I brought from Hawaii for the nurses, paid off in the long run. :)
The doctors prepared me by telling me to expect most of what I am experiencing, so I understand that it is all part of the process, and I try to remind myself that this is all "normal" and that "this too shall pass."
Today, my friend's, Mike and Mario, came to visit and delivered a fresh load of laundry, which cheered me.
I think I am back on track, for the most part, with my meals, and over the nausea, which is fantastic.
The rest of the evening was uneventful. 'Started to watch a comedy, and fell asleep for the night. I think my body may finally be starting to fall into a routine, and be adjusting to a few hours of sleep here and there throughout the night, with a nap during the day.
This morning, (Transplant Day +5), I was visited by a team of about 10 doctors from around the world who administer Dr. Burt's stem cell protocol in their countries. They were here at Northwestern Medical Center for a one day Stem Cell Conference, hosted by Dr. Burt. They were very kind and assured me that I chose the right treatment, stating that the majority of their patients are trying to get the same procedure. They were quite impressed with the research I have done on my own, and asked if I would be willing to correspond with some other patients to share my experience. I feel very fortunate to be here getting this treatment.
Due to my low platelet count, I received my first bag of platelets today, and anticipate receiving red blood cells within the next few days. I also started receiving Neupogen today, which is a growth factor given by injection in my abdomen, to help increase the rate of stem cell production. Side effects of Neupogen can include fever, achiness, and bone & joint pain, all of which I have begun to experience, and can take pain medication as needed. 'Just to be on the safe side, blood cultures were drawn due to my slightly elevated temperature to rule out any possible infection.
My brother, Carl, arrived from Florida today and will be taking Wendy's place after she leaves to go back to Hawaii tomorrow. It is really good to see him, as I hadn't seen him in nearly three years. We will have a lot of catching up to do. Wendy has provided great support while she's been here, and I don't know how I would've gotten through the past 11 days without her. A quality, loving, caregiver is a crucial component of the stem cell transplant process. I will miss her.
I also got my daily call from my girls, which was the highlight of my day. Taylor, my youngest, told me all about her modeling photo shoot, which was a huge success. She is on track for her beauty pageant in May, which I am looking forward to attending. She showed me her new dresses via Skype and has been diligently practicing piano for the talent portion of the competition. Alex, my oldest, was very excited about winning first place in her speech competition, which will take her to the State Finals at the Hilton Hawaiian Village next month. I am so proud of both of them and the wonderful young ladies they are growing up to be. They make me so happy.
Oh, I almost forgot..... tomorrow, I am moving to a much bigger, corner room, in which two of the adjoining walls are comprised completely of glass windows. This provides a partial lake view as well a spectacular view of the city. This is a much welcomed move as the room I am currently in is a broom closet in comparison, with only one tiny window, which I refer to as "solitary confinement". I guess all those boxes of macadamia nut candies I brought from Hawaii for the nurses, paid off in the long run. :)
Thursday, March 3, 2011
Transplant Day +3
It has been three days since my stem cell transplant and I am doing pretty well. My doctors visit me twice daily and have been very happy with my progress. As of yesterday, labs officially indicated my old army of immune cells that went rogue and were attacking their own forces (my healthy tissue) have been destroyed. A new army is in the infancy stages of development from my 10 million stem cells reinfused 3 days prior. It will be quite some time before I have a seasoned, well trained army of immune cells ready to fight and win complex wars against my body from foreign invaders. However, when my new army is formed around day transplant day +10, they will have sufficient training to fight off small scale attacks and will have assistance from antiviral and antibiotics forces until they fully develop in the months to come.
Thankfully, I am mostly over the nausea and have been able to hold down my last few meals. I am eating more, and most of my gastrointestinal issues have resolved, including the constipation, for which I am very grateful. One thing I do continue to have, and apparently will have for months to come, according to my doctors, is fatigue. I do try to get up and walk laps around the unit a few times a day, but tire quickly, as the level of cells that carry oxygen molecules in my blood is decreased, as expected.
Yesterday, my friend, Mike, came by again and made us laugh as usual. His upbeat personality and sense of humor helped uplift my mood. We reminisced about some of the good ole' days back when we were both enlisted in the Navy. Mike also arrived with a fresh supply of laundry, which I really appreciated, as personal laundry services are very limited in the area.
The last several days I have received calls of encouragement from shipmates I haven't seen in many years. This morning, I got a call from an old shipmate, Ron, who retired from the Navy in 2003, but is currently a contractor serving in Iraq. It was great to hear from him and laugh and joke about old times. Time passes so quickly. It means a lot to keep in touch with friends and to know that so many people care.
Wendy and I have been watching some classical comedies including, "Revenge of the Nerds", and "Back to School", which we haven't seen in so long, that it was like watching them for the first time. We laughed a lot, which is good for healing and helped to pass some time. Today, we attended a class provided by "Gilda's Club", which is a cancer support group, started in the name of Gilda Radner, from Saturday Night Live, who passed away from cancer. We learned relaxation techniques in "Chair Yoga", which may come in handy when I return back to work. Also, we did some art therapy, which was quite relaxing in itself, despite my lack of artistic ability. It made us realize how rarely we remember to stop and take the time to just play or meditate, which is so important for a healthy balance, and overall well-being.
Over the next few days my primary goals are to rest, prevent infection, and let my stem cells mature and engraft. Sadly, Wendy returns to Hawaii on Sunday and goes back work on Monday. My brother arrives tomorrow and will stay with me until I return to Hawaii.
If all continues to go well, I can be discharged from the hospital as early as 11 March and I would stay in the local area until my follow up appointment with Dr. Burt on 16 March. This means I could be back in Hawaii as early as 17 March. :)
Thankfully, I am mostly over the nausea and have been able to hold down my last few meals. I am eating more, and most of my gastrointestinal issues have resolved, including the constipation, for which I am very grateful. One thing I do continue to have, and apparently will have for months to come, according to my doctors, is fatigue. I do try to get up and walk laps around the unit a few times a day, but tire quickly, as the level of cells that carry oxygen molecules in my blood is decreased, as expected.
Yesterday, my friend, Mike, came by again and made us laugh as usual. His upbeat personality and sense of humor helped uplift my mood. We reminisced about some of the good ole' days back when we were both enlisted in the Navy. Mike also arrived with a fresh supply of laundry, which I really appreciated, as personal laundry services are very limited in the area.
The last several days I have received calls of encouragement from shipmates I haven't seen in many years. This morning, I got a call from an old shipmate, Ron, who retired from the Navy in 2003, but is currently a contractor serving in Iraq. It was great to hear from him and laugh and joke about old times. Time passes so quickly. It means a lot to keep in touch with friends and to know that so many people care.
Wendy and I have been watching some classical comedies including, "Revenge of the Nerds", and "Back to School", which we haven't seen in so long, that it was like watching them for the first time. We laughed a lot, which is good for healing and helped to pass some time. Today, we attended a class provided by "Gilda's Club", which is a cancer support group, started in the name of Gilda Radner, from Saturday Night Live, who passed away from cancer. We learned relaxation techniques in "Chair Yoga", which may come in handy when I return back to work. Also, we did some art therapy, which was quite relaxing in itself, despite my lack of artistic ability. It made us realize how rarely we remember to stop and take the time to just play or meditate, which is so important for a healthy balance, and overall well-being.
Over the next few days my primary goals are to rest, prevent infection, and let my stem cells mature and engraft. Sadly, Wendy returns to Hawaii on Sunday and goes back work on Monday. My brother arrives tomorrow and will stay with me until I return to Hawaii.
If all continues to go well, I can be discharged from the hospital as early as 11 March and I would stay in the local area until my follow up appointment with Dr. Burt on 16 March. This means I could be back in Hawaii as early as 17 March. :)
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