All,
The ball is rolling. We have started. Today Beck and I went to UCSF accompanied by Diane, my donor sister, where Diane learned to give herself the injections that will increase the production of blood stem cells. She will administer two injections each day for each of the next four days. We will return to UCSF on Monday at which time the stem cells will be harvested through a catheter that will be installed for that purpose. The goal is to collect 3-8 million stem cells for each kilogram of my weight. Suffice it to say, that’s a BIG number! If more are required after harvesting on Monday, she will do it a second time on Tuesday.
I will be admitted to the hospital on that Tuesday, Feb. 5. I will undergo various procedures then chemo will begin that afternoon. I will receive chemo for 5 days, then rest 2 days. On Feb. 12, I will receive Diane’s stem cells by IV infusion. At that time, my immune system will be gone and we wait 10-14 days for engraftment to occur. Then the fun starts. More on that as events unfold.
What has been learned? If someone asks if you want a massage, say “Yes.” If someone asks if you want a bone marrow biopsy, say “No.” If you haven’t told those you love that you love them, do it today. If you find yourself with a terrible disease, you will be surprised when the encouragement comes from many unexpected places.
To all of you who have provided us with love and encouragement, we love you and can’t put into words what you’ve done for us. Keep it up. We need it now more than ever. We’ll be in touch.
Thursday, January 31, 2008
Sunday, January 13, 2008
And the Survey Said...
We have received word from UCSF. I will be hospitalized on Feb 5. I will undergo five days of chemo, then rest for two days. The transplant will take place on Feb 12. I will be hospitalized from 4-6 weeks (doctor guesses 28 days after the transplant). When released, Beck and I will relocate to San Francisco while Emily holds down the fort in Manteca for 3-6 months until UCSF gives the OK to return home. We’ll forward addresses when we know for sure what they are.
More later…
Rick
More later…
Rick
Saturday, January 5, 2008
Family Meeting
All,
It’s been awhile since we talked. Sorry about that. Lots on my plate! Hope you had a great Christmas. We sure did.
As of today, we know that my previous hospitalization/chemo had precisely the desired effect. At this writing, I am whole again. My numbers are those of a healthy person, and there are no excess blasts in my bone marrow. My immune system is operating, and I can fight my own battles. The doctor said this outcome was better than he had hoped for. That’s the good news. The rest of the story is that all this is temporary, but it will last long enough for me to get to transplant. I have a few little aches and pains that are similar to the Sweets, but my doctor feels it’s the effects of tapering the steroids (which are down to 5mg daily). Beyond that, I feel terrific. It just takes me awhile to get going after being in one place for awhile. And there’s that damn rash! Itchy, itchy, itchy; again, from the steroids.
Last Thursday Beck, Emily, Tori, Sean (Tori’s husband) and I went to San Francisco to meet with Dr. Linker for our “Family Meeting.” These meetings are scheduled with all patients to make sure everyone is on the same page. Not much new learned, but more on that later.
As I said, these meetings are very common. Family members are welcome and encouraged to attend. They DO NOT, however have rooms to accommodate 7 people (including the doc and my Transplant Coordinator). We were put in a small room such that we had to leave the door open for ventilation. We then were moved to the doctor’s office. It was only marginally bigger, but we made due.
As to the contents of the meeting, the doctor spent most of 2 hours discussing the procedure, expectations, outcomes, etc. He was very clear about what will be done, and what we can expect. This procedure in itself can be life threatening. There are many obstacles to be avoided or to overcome. There are several outcomes that can be statistically measured. These outcomes are all measured on a sliding scale such that the odds of survival increase as certain landmarks are passed. Going in, the outcomes include death from complications of the transplant by year five 30%, survival and relapse by year five 30%, survival with a cure (meaning no lingering side effects) 40% at year five. Again, this is a sliding scale. When I leave the hospital, odds of survival increase. One hundred days after transplant, if I remain healthy and there are is no severe graft versus host disease (GVHD), the odds will be in my favor and will continue to improve. There are other milestones, and each improves my odds. At year one, if I am not in relapse or suffering from severe GVHD, odds of survival are at 80%. It’s also possible that I will have traded Sweets and Myelodysplasia for some lingering issues that are not life threatening. Time will tell. The date of the transplant will be determined next week, but the target remains the last week of January or the first week of February. I’ll let you know.
A bone marrow transplant is different than other hospital procedures in 2 ways. First, other procedures are carried out such that when the patient leaves the hospital, the serious stuff is done and home is for recuperation. With a bone marrow transplant, most of the serious stuff happens after the patient leaves the hospital. Secondly, a bone marrow transplant patient arrives at the hospital several days prior to the transplant to allow for preparation (in my case, chemo).The transplant happens on day 0. I will be admitted 8 days before that on day -8, then we count down to transplant, -7,-6, etc. I will receive chemo for 5 days, (day -7 to day -3) then rest for two days (day -2 and day -1) to get the chemo out of my system. On day 0, I will have the transplant which is an intravenous introduction of my sister’s blood stem cells. It will be a momentous occasion, but a simple mundane procedure. Then we wait. It will take about 14 days for the cells to make it into my bones and to begin creating new cells. This is called engraftment. We will know it’s working when my blood counts begin to appear. Between the transplant and engraftment, I will be defenseless. I will have 0 white cells, and 0 red cells. I will be given massive doses of antibiotics; transfusions will be administered as needed. I will be closely monitored for any sign of disease, infection, or rejection. This is a very scary time. For most of it, I’ll feel pretty good, if fatigued. Effects of chemo will peak around day +6 and should last about four days. There will NOT be any total body radiation. There have been advances in the process recently. One is a new chemo therapy drug that does everything that radiation does but it’s much easier on the patient. I’m told the infusion of the chemicals will be easier on me than my last visit although the fatigue will be greater and will last longer. Also, the potential for complications is much greater.
The target for hospital release is day +25 (25 days after transplant). That’s very fluid though, and there are many variables that could alter the date. After being released, we will be required to relocate to within an hour’s drive to from the hospital. We are unsure yet where that will be. We need a place with kitchen facilities, at least one private bathroom, and a living space so Beck can relax while I sleep. The Residence Inn is available and will be used as a last resort.
When I’m released, my immune system will be working, but barely so I have to be in an environment that’s clean and easy to KEEP clean. Also, I must avoid sick people at all costs (the flu or a cold could be fatal). Through all this, Beck is my primary caregiver. If she gets sick, we’ll call in the volunteers. If you want to add your name to that list, or want to come down and give her a break, let us know. We’d love to discuss it with you.
We will remain near the hospital for 3-6 months, depending on what complications there are and how severe. I will be seen at the clinic 2-3 times a week initially; that will gradually be reduced to weekly, then less frequently. During this time, Beck’s job will be quite involved. She will be in charge of all medications, documenting EVERYTHING, and transporting me everywhere. When it has been determined that I am well enough, we will return to Manteca. Then visits will be monthly through the first year. So that’s about all. I will advise when we know the date.
Also, many of you are aware of the incredible pain I experienced during both bone marrow biopsies performed at UCSF. Beck witnessed the last one. We spoke about this specifically with the doctor. It seems they changed their pain reduction policies a few weeks ago. Originally they would provide enough sedation that the patient required 4 to 6 hours to sleep it off. It seems that put a kink in their ability to do these procedures because space was occupied with sleeping patients. They decided to change the procedure and use a local anesthetic that would allow the patient to vacate the room sooner and allow the ability to serve more patients. We have a clear understanding now that I have experienced the new procedure and any future bone marrow biopsies will be conducted using the old protocol.
Finally, my goal is to come out of this healthy enough to play golf and ride a bike; if there are no lingering effects, so much the better. There is the possibility that I may not survive this. While I am aware of that, I remain optimistic. I am surrounded by people who love me, people I’ve never met are praying for me, and my medical team is top notch. To all of you who have kept me in your thoughts, or called or sent cards, thank you from the bottom of my heart. You will never know how much you mean to me. Many times a card or letter arrived just when I needed it most. Keep it up; your encouragement keeps us moving forward.
Until next time,
Rick
It’s been awhile since we talked. Sorry about that. Lots on my plate! Hope you had a great Christmas. We sure did.
As of today, we know that my previous hospitalization/chemo had precisely the desired effect. At this writing, I am whole again. My numbers are those of a healthy person, and there are no excess blasts in my bone marrow. My immune system is operating, and I can fight my own battles. The doctor said this outcome was better than he had hoped for. That’s the good news. The rest of the story is that all this is temporary, but it will last long enough for me to get to transplant. I have a few little aches and pains that are similar to the Sweets, but my doctor feels it’s the effects of tapering the steroids (which are down to 5mg daily). Beyond that, I feel terrific. It just takes me awhile to get going after being in one place for awhile. And there’s that damn rash! Itchy, itchy, itchy; again, from the steroids.
Last Thursday Beck, Emily, Tori, Sean (Tori’s husband) and I went to San Francisco to meet with Dr. Linker for our “Family Meeting.” These meetings are scheduled with all patients to make sure everyone is on the same page. Not much new learned, but more on that later.
As I said, these meetings are very common. Family members are welcome and encouraged to attend. They DO NOT, however have rooms to accommodate 7 people (including the doc and my Transplant Coordinator). We were put in a small room such that we had to leave the door open for ventilation. We then were moved to the doctor’s office. It was only marginally bigger, but we made due.
As to the contents of the meeting, the doctor spent most of 2 hours discussing the procedure, expectations, outcomes, etc. He was very clear about what will be done, and what we can expect. This procedure in itself can be life threatening. There are many obstacles to be avoided or to overcome. There are several outcomes that can be statistically measured. These outcomes are all measured on a sliding scale such that the odds of survival increase as certain landmarks are passed. Going in, the outcomes include death from complications of the transplant by year five 30%, survival and relapse by year five 30%, survival with a cure (meaning no lingering side effects) 40% at year five. Again, this is a sliding scale. When I leave the hospital, odds of survival increase. One hundred days after transplant, if I remain healthy and there are is no severe graft versus host disease (GVHD), the odds will be in my favor and will continue to improve. There are other milestones, and each improves my odds. At year one, if I am not in relapse or suffering from severe GVHD, odds of survival are at 80%. It’s also possible that I will have traded Sweets and Myelodysplasia for some lingering issues that are not life threatening. Time will tell. The date of the transplant will be determined next week, but the target remains the last week of January or the first week of February. I’ll let you know.
A bone marrow transplant is different than other hospital procedures in 2 ways. First, other procedures are carried out such that when the patient leaves the hospital, the serious stuff is done and home is for recuperation. With a bone marrow transplant, most of the serious stuff happens after the patient leaves the hospital. Secondly, a bone marrow transplant patient arrives at the hospital several days prior to the transplant to allow for preparation (in my case, chemo).The transplant happens on day 0. I will be admitted 8 days before that on day -8, then we count down to transplant, -7,-6, etc. I will receive chemo for 5 days, (day -7 to day -3) then rest for two days (day -2 and day -1) to get the chemo out of my system. On day 0, I will have the transplant which is an intravenous introduction of my sister’s blood stem cells. It will be a momentous occasion, but a simple mundane procedure. Then we wait. It will take about 14 days for the cells to make it into my bones and to begin creating new cells. This is called engraftment. We will know it’s working when my blood counts begin to appear. Between the transplant and engraftment, I will be defenseless. I will have 0 white cells, and 0 red cells. I will be given massive doses of antibiotics; transfusions will be administered as needed. I will be closely monitored for any sign of disease, infection, or rejection. This is a very scary time. For most of it, I’ll feel pretty good, if fatigued. Effects of chemo will peak around day +6 and should last about four days. There will NOT be any total body radiation. There have been advances in the process recently. One is a new chemo therapy drug that does everything that radiation does but it’s much easier on the patient. I’m told the infusion of the chemicals will be easier on me than my last visit although the fatigue will be greater and will last longer. Also, the potential for complications is much greater.
The target for hospital release is day +25 (25 days after transplant). That’s very fluid though, and there are many variables that could alter the date. After being released, we will be required to relocate to within an hour’s drive to from the hospital. We are unsure yet where that will be. We need a place with kitchen facilities, at least one private bathroom, and a living space so Beck can relax while I sleep. The Residence Inn is available and will be used as a last resort.
When I’m released, my immune system will be working, but barely so I have to be in an environment that’s clean and easy to KEEP clean. Also, I must avoid sick people at all costs (the flu or a cold could be fatal). Through all this, Beck is my primary caregiver. If she gets sick, we’ll call in the volunteers. If you want to add your name to that list, or want to come down and give her a break, let us know. We’d love to discuss it with you.
We will remain near the hospital for 3-6 months, depending on what complications there are and how severe. I will be seen at the clinic 2-3 times a week initially; that will gradually be reduced to weekly, then less frequently. During this time, Beck’s job will be quite involved. She will be in charge of all medications, documenting EVERYTHING, and transporting me everywhere. When it has been determined that I am well enough, we will return to Manteca. Then visits will be monthly through the first year. So that’s about all. I will advise when we know the date.
Also, many of you are aware of the incredible pain I experienced during both bone marrow biopsies performed at UCSF. Beck witnessed the last one. We spoke about this specifically with the doctor. It seems they changed their pain reduction policies a few weeks ago. Originally they would provide enough sedation that the patient required 4 to 6 hours to sleep it off. It seems that put a kink in their ability to do these procedures because space was occupied with sleeping patients. They decided to change the procedure and use a local anesthetic that would allow the patient to vacate the room sooner and allow the ability to serve more patients. We have a clear understanding now that I have experienced the new procedure and any future bone marrow biopsies will be conducted using the old protocol.
Finally, my goal is to come out of this healthy enough to play golf and ride a bike; if there are no lingering effects, so much the better. There is the possibility that I may not survive this. While I am aware of that, I remain optimistic. I am surrounded by people who love me, people I’ve never met are praying for me, and my medical team is top notch. To all of you who have kept me in your thoughts, or called or sent cards, thank you from the bottom of my heart. You will never know how much you mean to me. Many times a card or letter arrived just when I needed it most. Keep it up; your encouragement keeps us moving forward.
Until next time,
Rick
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