(Written by Lisa): As we speak Jon is getting his donor's stem cells!! Yeah!! The nurse said they will probably take two hours or so to drip in...kind of like a blood transfusion. We found out something very interesting about his new cells. Jon is O positive, but his donor is A positive for blood type. His nurse said that eventually, Jon's blood will change over to A positive. Weird, huh?
This morning we had to be here at 8 am for Jon to get his TBI (total body irradiation), and of course they were running behind when we got here - you'd think at 8 am there wouldn't be a chance of them being behind! I'm just glad we didn't have a 3 pm appointment. The TBI made him quite sleepy (along with the premeds he had to take), plus it upset his stomach, so lunch wasn't a pretty sight. He got done with TBI around 10 am or so, and we headed down to 1 west, where his room is. They actually had it waiting for him. Right now he is sleeping while his cells drip in and occasionally nibbling on dry toast. Hopefully dinner will be better. The nurse said upset stomach is pretty common after TBI.
Both of Jon's parents are here this week with their RV. Security is letting them park right near the entrance by Jon's room, so they can come and go as they please. When the kids come to visit, they'll be able to have some time out in "PopPop's bus"! Actually, both of them call it "MomMom's coach" and "PopPop's bus"! It's very cute.
Hopefully later on tonight or tomorrow Jon will be able to update. Pray for him that his nausea would subside, and that he would have minimal side effects from the transplant.
Friday, February 29, 2008
Thursday, February 28, 2008
The yuck has arrived
I made it through the snow both Tue. and Wed., and got treatments both days, as well as a nebulizer treatment of pantamidine, which should prevent PCP pneumonia, a common opportunistic infection that affects those with weakened immune systems. The pantamidine is being given because I can't take the Bactrim pills that are usually used, as they would cause my blood counts to drop too much. The pantamidine was difficult, and caused me to choke so much I felt like I was going to throw up, so I took some Ativan in the middle of the treatment, and that helped get me through it. The tech administering the treatments told me to use my inhaler next time before the pantamidine, and to rest every few minutes so I don't get a coughing fit so bad that I throw up.
I am enjoying my "day off" about as much as I can, given that I am a little nauseous from all the treatments and then all the drugs I have to take in addition to the treatments. The only task for today is to pack up for the hospital, but given that Lisa will be driving back and forth most days and my parents will be in their RV out in the hospital parking lot, it won't be a big deal for them to bring in more clothes for me and such.
Well, I'm going to go take a nap - the morning meds are making me really drowsy. Hopefully, I can sleep off some of the nausea before dinner - a sort of "last supper" before checking in at "Hotel Hitchcock" that I hope will taste good. Next time I post, I'll probably be doing so from the hospital. Talk to you next "from the other side"!
I am enjoying my "day off" about as much as I can, given that I am a little nauseous from all the treatments and then all the drugs I have to take in addition to the treatments. The only task for today is to pack up for the hospital, but given that Lisa will be driving back and forth most days and my parents will be in their RV out in the hospital parking lot, it won't be a big deal for them to bring in more clothes for me and such.
Well, I'm going to go take a nap - the morning meds are making me really drowsy. Hopefully, I can sleep off some of the nausea before dinner - a sort of "last supper" before checking in at "Hotel Hitchcock" that I hope will taste good. Next time I post, I'll probably be doing so from the hospital. Talk to you next "from the other side"!
Monday, February 25, 2008
And so it begins
It has begun. Today was another long day - what was to be about a half day turned into a full day for various reasons. I arrived about 8:30 for bloodwork, which went rather smoothly, then down to the opposite end of the DHMC complex for my central venous line to be surgically placed. This went pretty quickly, too, but then the blood work results came back showing continued low WBC counts, so another bone marrow biopsy was ordered, and I was fit in to the schedule there. Even then, I was out of recovery and ready to go down to the HSCU to get my first chemo treatment, which I had been told would be about 30-45 minutes. After finally getting my first food of the day around 2pm, we waited until almost 3:30pm to get the chemo, as they said they had to weigh me again in order to properly dose the chemo, the pharmacy had to mix it, check it, and then transport it down to the floor, so it didn't actually finish infusing until about 4:15pm, and we were able to leave about 4:30.
Tomorrow, we'll head up there around 10am, as a storm is coming through, and they said I can show up as early as 11am for my Day 2 dose. Right now, I really don't feel any chemo effects yet - just a considerable amount of pain from the line insertion. The rubber catheter is inside my jugular vein, and tunnels under my skin along the collarbone, exiting the skin near my right armpit. There's a good bit of tugging and pulling anytime I move my head or neck, but it is less with my painkillers. Hopefully, I will continue to get used to it. That's all for now - a long day needs to end with my head hitting the pillow a bit early, I think!
Tomorrow, we'll head up there around 10am, as a storm is coming through, and they said I can show up as early as 11am for my Day 2 dose. Right now, I really don't feel any chemo effects yet - just a considerable amount of pain from the line insertion. The rubber catheter is inside my jugular vein, and tunnels under my skin along the collarbone, exiting the skin near my right armpit. There's a good bit of tugging and pulling anytime I move my head or neck, but it is less with my painkillers. Hopefully, I will continue to get used to it. That's all for now - a long day needs to end with my head hitting the pillow a bit early, I think!
Friday, February 22, 2008
All set
In the midst of another snowstorm, we made it up and back to Dartmouth today, and everything is set for me to begin the chemo part of my transplant on Monday. Final results of my most recent PET scan were conclusively and finally completely clean, so I now have the best chance possible of having a "successful" transplant, with no future recurrence of the lymphoma.
When I got to the hospital today, I had to do another pulmonary function test, and another chest X ray. While the chest X ray results weren't available before I came home, I did learn that I have gained almost 10% lung function since my last PFT on Tue. Feb. 12, so things are headed in the right direction. I also realized why it seems like I am always out of breath - even with the recent gains, I am still only functioning at about 36% of what a normal guy my age should be, compared to 56% prior to the lung surgery. Blood numbers were run again, another physical exam, and then the review of the transplant procedure and signing of the consent forms.
So, now we kick back, enjoy the weekend, and prepare for the "chemo grind" next week. Actually, the treatments will only be 30-45 minutes each day, so I'll be here in Claremont more than I'll be at the hospital, at least until Friday. On Monday, I return to the hospital at 9am to get my central line placed, after which I'll receive my chemo through it. I will also start some of my immune suppressing drugs on Monday (other won't be started until Wed.), and when the chemo treatment is done, I'll head back to Claremont for the night, returning Tue. & Wed. for repeat chemo treatments. On Thu., I get the "day off" and will stay put in Claremont, and then next Fri. Feb. 29, I will show up in the morning for a very low (lower than usual) dose treatment of Total Body Irradiation (TBI), and will then be admitted mid-day before getting my donor's cells infused sometime in the afternoon. Then, the wait for engraftment begins.
So, that's where things are at tonight. I'll update again early next week after chemo starts. For now, keep praying for smooth sailing!
When I got to the hospital today, I had to do another pulmonary function test, and another chest X ray. While the chest X ray results weren't available before I came home, I did learn that I have gained almost 10% lung function since my last PFT on Tue. Feb. 12, so things are headed in the right direction. I also realized why it seems like I am always out of breath - even with the recent gains, I am still only functioning at about 36% of what a normal guy my age should be, compared to 56% prior to the lung surgery. Blood numbers were run again, another physical exam, and then the review of the transplant procedure and signing of the consent forms.
So, now we kick back, enjoy the weekend, and prepare for the "chemo grind" next week. Actually, the treatments will only be 30-45 minutes each day, so I'll be here in Claremont more than I'll be at the hospital, at least until Friday. On Monday, I return to the hospital at 9am to get my central line placed, after which I'll receive my chemo through it. I will also start some of my immune suppressing drugs on Monday (other won't be started until Wed.), and when the chemo treatment is done, I'll head back to Claremont for the night, returning Tue. & Wed. for repeat chemo treatments. On Thu., I get the "day off" and will stay put in Claremont, and then next Fri. Feb. 29, I will show up in the morning for a very low (lower than usual) dose treatment of Total Body Irradiation (TBI), and will then be admitted mid-day before getting my donor's cells infused sometime in the afternoon. Then, the wait for engraftment begins.
So, that's where things are at tonight. I'll update again early next week after chemo starts. For now, keep praying for smooth sailing!
Monday, February 18, 2008
Right on track
We are busy (especially Lisa!) getting things packed up and ready to go here at home. We are on track to push off from here Thu. AM for Claremont and begin this transplant process - again. While we've been waiting and praying for this day to come, now that we are this close, I find mysef a bit more anxious than I thought I would. Tomorrow will be our big day of packing clothes, kids toys, stuff for me to do in the hospital, and cleaning up the house one last time. I've also got to take care of all the address changes, service stoppages for phone, cable, etc. and some other miscellaneous chores around the house.
Continue to pray that all goes smoothly in preparation for the transplant next week. Pray for good weather Thu. for the move down to Claremont, as well as good weather next week, as I'll have to drive back and forth between Claremont and Dartmouth each day, Mon - Wed for chemo, and we don't have the luxury of skipping a day because of bad weather. Thanks for your continued support, love, & prayers.
Continue to pray that all goes smoothly in preparation for the transplant next week. Pray for good weather Thu. for the move down to Claremont, as well as good weather next week, as I'll have to drive back and forth between Claremont and Dartmouth each day, Mon - Wed for chemo, and we don't have the luxury of skipping a day because of bad weather. Thanks for your continued support, love, & prayers.
Wednesday, February 13, 2008
The longest day
Well, not quite, but yesterday was one of the longest days I've had in a long time. Monday night, I drove myself down to Claremont and spent the night with Lisa's folks. Yesterday, I was up and out the door just after 6am in order to arrive at DHMC by 7am for my PET scan, followed by a full day of appointments with the social worker, surgeon, & Dr Hill, my transplant doctor, as well as a chest Xray and another pulmonary function test to check up on the effectiveness of the surgery. I left the building just before 5pm, stopped for dinner with Lisa's sister, Rachel, and her family in Loudon, and then hit the road again about 7pm, and arrived home here in Waldoboro about 10:30pm, about as tired and exhausted as I remember feeling. I did enjoy some "solo time" in the car, both on the way down and the way home, listening to several sermons and some good music. One of the sermons I listened to was by John Piper, titled Christ and Cancer, and was incredibly encouraging, challenging, and good for my soul. I'd encourage you to listen to it if you find the time, or at least read through the transcript, available through the link above. If you haven't read Piper's article "Don't Waste your Cancer", I'd recommend that to you, as well.
The surgeon was pleased with the healing of the incisions and the results of the Xray and the PFT. Dr. Hill was pleased with the results of the PET scan, although he was a bit confused about a "bright spot" near my belly button, which had never been seen before. As I was reflecting this morning on all of this, I realized that I had left a pen in my sweatshirt pouch pocket - hence the bright spot near my belly button; it was seeing the metal from the pen in my pocket! We are waiting for the "final report" of the PET scan either today or tomorrow, but all looks good and things are a "go" to begin the transplant a week from this coming Monday, on Mon. Feb. 25.
We will move down to Claremont next Thu. Feb. 21, as we've been planning, and I'll complete all the necessary paperwork at DHMC on Fri., then relax over the weekend and begin 3 days of outpatient chemo treatments on Mon. Feb. 25. I'll have the "day off" on Thu. Feb. 28, which is also the day that my donor will have his cells collected, and then I'll be admitted on Fri. Feb. 29 (yes leap day!) and have the donor's cells infused that same day. I'll then remain an inpatient there at DHMC for about 2 weeks or so, hopefully getting discharged sometime during the week before Easter Sunday.
For now, continue to pray with us for:
1) continued good health for all of us, as well as the donor.
2) smooth plans and preparations over the next 10 days or so.
3) safety driving, both next Thu., as well as during the following week as we travel back and forth between Claremont and DHMC for appointments and treatments.
The surgeon was pleased with the healing of the incisions and the results of the Xray and the PFT. Dr. Hill was pleased with the results of the PET scan, although he was a bit confused about a "bright spot" near my belly button, which had never been seen before. As I was reflecting this morning on all of this, I realized that I had left a pen in my sweatshirt pouch pocket - hence the bright spot near my belly button; it was seeing the metal from the pen in my pocket! We are waiting for the "final report" of the PET scan either today or tomorrow, but all looks good and things are a "go" to begin the transplant a week from this coming Monday, on Mon. Feb. 25.
We will move down to Claremont next Thu. Feb. 21, as we've been planning, and I'll complete all the necessary paperwork at DHMC on Fri., then relax over the weekend and begin 3 days of outpatient chemo treatments on Mon. Feb. 25. I'll have the "day off" on Thu. Feb. 28, which is also the day that my donor will have his cells collected, and then I'll be admitted on Fri. Feb. 29 (yes leap day!) and have the donor's cells infused that same day. I'll then remain an inpatient there at DHMC for about 2 weeks or so, hopefully getting discharged sometime during the week before Easter Sunday.
For now, continue to pray with us for:
1) continued good health for all of us, as well as the donor.
2) smooth plans and preparations over the next 10 days or so.
3) safety driving, both next Thu., as well as during the following week as we travel back and forth between Claremont and DHMC for appointments and treatments.
Thursday, February 7, 2008
Nothing beats home!
We did arrive home safely late Tue. afternoon, and have been home ever since, catching up on paying bills & reading all the mail (half of which is still being forwarded to Claremont for some reason even the post office can't figure out), Lisa's been doing laundry, and we've all been resting and just enjoying being at home together. We were glad we came home Tue., as we got some sleet & freezing rain early Wed., followed by about 4-5" of new snow that started last night and ended sometime earlier this morning.
I am due to go back down to Dartmouth next Tue. for a 7am PET Scan, followed by a 3:30pm appt. with my transplant doctor, Dr. Hill, a 4pm chest x-ray, and a 4:45pm follow-up appt. with the surgeon. As you can see, there will be a lot of waiting during the day, so I'm planning to take a book (or two!) with me to pass the time. I may do this trip myself, so Lisa and the kids can have as much time at home as possible before the transplant.
Plans are still on track (if all goes well next Tue.) for the preparatory chemo to begin Mon. Feb. 25 (for 3 days). This will be done as an outpatient at Dartmouth, with Lisa driving me in from Claremont each day for about an hour of treatment each day. Thu. Feb. 28 is my day of rest, and the day that my donor will make his donation, and then I will have the donor's cells infused (this is the actual "transplant") on Fri. Feb. 29, followed by a 14-17 day inpatient stay there at Dartmouth.
Continue to pray with us for:
1) safety on the road and no winter weather next Mon. night and all day Tue.
2) a completely clean PET scan on Tue., showing no active cancer anywhere. This will give the transplant the best chance of being a long-term success and not having a recurrence somewhere down the line (this has been our goal since we began this journey!).
3) enjoyment of these last 2 weeks at home, and good health for all of us during this time.
4) Continued recovery from my surgery and improvement in strength and stamina prior to the transplant.
Thanks for continuing to pray and check in here for updates.
I am due to go back down to Dartmouth next Tue. for a 7am PET Scan, followed by a 3:30pm appt. with my transplant doctor, Dr. Hill, a 4pm chest x-ray, and a 4:45pm follow-up appt. with the surgeon. As you can see, there will be a lot of waiting during the day, so I'm planning to take a book (or two!) with me to pass the time. I may do this trip myself, so Lisa and the kids can have as much time at home as possible before the transplant.
Plans are still on track (if all goes well next Tue.) for the preparatory chemo to begin Mon. Feb. 25 (for 3 days). This will be done as an outpatient at Dartmouth, with Lisa driving me in from Claremont each day for about an hour of treatment each day. Thu. Feb. 28 is my day of rest, and the day that my donor will make his donation, and then I will have the donor's cells infused (this is the actual "transplant") on Fri. Feb. 29, followed by a 14-17 day inpatient stay there at Dartmouth.
Continue to pray with us for:
1) safety on the road and no winter weather next Mon. night and all day Tue.
2) a completely clean PET scan on Tue., showing no active cancer anywhere. This will give the transplant the best chance of being a long-term success and not having a recurrence somewhere down the line (this has been our goal since we began this journey!).
3) enjoyment of these last 2 weeks at home, and good health for all of us during this time.
4) Continued recovery from my surgery and improvement in strength and stamina prior to the transplant.
Thanks for continuing to pray and check in here for updates.
Monday, February 4, 2008
home sweet home
I have recovered enough that we are going home to Waldoboro tomorrow morning. The forecast tomorrow is for freezing rain and sleet in the AM, then turning to rain, so our plan is to wait for the warm up to rain, and then hit the road. Pray for safe travels (and quickly, so as to lessen the time spent in the car, which is still not the most comfortable).
I still don't have firm word on when my follow up appointment with the surgeon (and the transplant doctor) will be, but it will be sometime the middle to end of next week. Pray that things will work out so that these 2 appointments would be as close together as possible, and that the accompanying PET scan would happen in a timely manner, as well.
We decided to treat the kids today, so we took them to see the new Veggie Tales movie "The Pirates who Don't do Anything" in Lebanon, right near the hospital. After following bad directions from Fandango, which sent us to the wrong side of town, we eventually found the theater and proceeded to turn $35 into an afternoon of fun at the big screen. JJ had never been to a theater before, and he couldn't believe that Larry the Cucumber was that big! Jilli had not been to the theater since I took her to see Happy Feet when I first got out of the hospital from my first transplant. The kids devoured most of the large popcorn we "shared", and between the screams of "whoaaa" and "can I have moh popcohn, pleze, Dad?", I think we found a good bargain!
Part of the movie was following Pa Grape, Larry the Cucumber, & Mr. Lunt (the Pirates who didn't do anything) as they chased Robert the Terrible and tried to rescue the princess. At one point as they were closing in on the dungeon where the princess was being kept,Larry asked "So what do we do when we get there?" to which Pa Grape replied "I don't know...I haven't gotten that far yet" and Mr. Lunt followed up with "Oh good, because I thought we had a plan". I think the screenwriters have been following my life, because I've been living that conversation over and over lately!
Thanks to the many of you are praying, especially those of you praying in the wee hours of the morning, when I have been having problems sleeping lately. Between the pain during the night and the painkillers making me nod off during the day, real sleep has been fleeting lately. Keep up the praying, and I'll keep updating as I get more info.
I still don't have firm word on when my follow up appointment with the surgeon (and the transplant doctor) will be, but it will be sometime the middle to end of next week. Pray that things will work out so that these 2 appointments would be as close together as possible, and that the accompanying PET scan would happen in a timely manner, as well.
We decided to treat the kids today, so we took them to see the new Veggie Tales movie "The Pirates who Don't do Anything" in Lebanon, right near the hospital. After following bad directions from Fandango, which sent us to the wrong side of town, we eventually found the theater and proceeded to turn $35 into an afternoon of fun at the big screen. JJ had never been to a theater before, and he couldn't believe that Larry the Cucumber was that big! Jilli had not been to the theater since I took her to see Happy Feet when I first got out of the hospital from my first transplant. The kids devoured most of the large popcorn we "shared", and between the screams of "whoaaa" and "can I have moh popcohn, pleze, Dad?", I think we found a good bargain!
Part of the movie was following Pa Grape, Larry the Cucumber, & Mr. Lunt (the Pirates who didn't do anything) as they chased Robert the Terrible and tried to rescue the princess. At one point as they were closing in on the dungeon where the princess was being kept,Larry asked "So what do we do when we get there?" to which Pa Grape replied "I don't know...I haven't gotten that far yet" and Mr. Lunt followed up with "Oh good, because I thought we had a plan". I think the screenwriters have been following my life, because I've been living that conversation over and over lately!
Thanks to the many of you are praying, especially those of you praying in the wee hours of the morning, when I have been having problems sleeping lately. Between the pain during the night and the painkillers making me nod off during the day, real sleep has been fleeting lately. Keep up the praying, and I'll keep updating as I get more info.
Saturday, February 2, 2008
How to spend your Saturday?
I have spent my time since being discharged late Thu. sleeping, reading, surfing the internet, watching TV and otherwise trying to stay occupied while dealing with pain between my incision and the spot where the chest tube was removed, which is still more severe than I had anticipated at this point. I am rotating Tylenol and Ibuprofen every 8 hours (i.e. Tylenol @ 8am, Ibuprofen @ 12pm, Tylenol @ 4pm), and taking my painkillers every 4 hours on top of that. I continue to try to find the right balance between pain relief and keeping the plumbing open.
The kids are enjoying having me home, even though I am spending most of the day upstairs, either in bed or in the recliner, and they are downstairs playing or watching some of their videos. We visit a couple times each day, and they love to come up and say hi when they go out somewhere or are going down for their nap. Lisa continues to be challenged by the stairs, caring for the kids down there and me up here, but is doing a fine job at all of the above. IT does not look like we will attempt to drive home Monday as we had tentatively planned, as I don't think I could deal with sitting in a car for the 4 hour trip home to Waldoboro. I will keep an eye on the pain, and we'll head home as soon as I feel up to it. Pray that point would come sooner rather than later!
A funny moment in the middle of all of this...Jilli had been telling everyone that daddy was taking to her "on the set" throughout the day, and no one could figure out what she was talking about - perhaps she thought I was talking to her through the TV? We finally realized that Lisa had put the baby monitor in our room upstairs so she could hear when I got up and around, I could tell her when I needed something, etc. Jilli had been hearing my voice through the monitor (set to her!) and told me that I hadn't talked back to her when she was speaking to me! I had to explain to her how a baby monitor worked and that I couldn't hear her - I wasn't just ignoring her. More levity in the midst of difficulty from our children.
I'll post again later when there is some change in my condition, or some further news on plans moving forward. When I left the hospital, plans were on schedule for me to receive my donor's cells on Feb. 29. I should have a follow up appt. with the lung surgeon sometime the end of next week (around Feb. 14) to make sure my recovery is on track for the transplant to proceed. Thanks for your continued support, love, and regular prayers for recovery and pain relief.
The kids are enjoying having me home, even though I am spending most of the day upstairs, either in bed or in the recliner, and they are downstairs playing or watching some of their videos. We visit a couple times each day, and they love to come up and say hi when they go out somewhere or are going down for their nap. Lisa continues to be challenged by the stairs, caring for the kids down there and me up here, but is doing a fine job at all of the above. IT does not look like we will attempt to drive home Monday as we had tentatively planned, as I don't think I could deal with sitting in a car for the 4 hour trip home to Waldoboro. I will keep an eye on the pain, and we'll head home as soon as I feel up to it. Pray that point would come sooner rather than later!
A funny moment in the middle of all of this...Jilli had been telling everyone that daddy was taking to her "on the set" throughout the day, and no one could figure out what she was talking about - perhaps she thought I was talking to her through the TV? We finally realized that Lisa had put the baby monitor in our room upstairs so she could hear when I got up and around, I could tell her when I needed something, etc. Jilli had been hearing my voice through the monitor (set to her!) and told me that I hadn't talked back to her when she was speaking to me! I had to explain to her how a baby monitor worked and that I couldn't hear her - I wasn't just ignoring her. More levity in the midst of difficulty from our children.
I'll post again later when there is some change in my condition, or some further news on plans moving forward. When I left the hospital, plans were on schedule for me to receive my donor's cells on Feb. 29. I should have a follow up appt. with the lung surgeon sometime the end of next week (around Feb. 14) to make sure my recovery is on track for the transplant to proceed. Thanks for your continued support, love, and regular prayers for recovery and pain relief.
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