Latest Update On Top
Saturday October 1st
I see it has been six weeks since I last updated so it is definitely time to bring you up on my current condition.
Nothing new on the cancer front, and apparently the cancer is in remission for now. If it will just stay there for another four years I will most probably be totally out of the woods. That will be a major milestone, of course.
Since I returned home from the hospital last month I have been working on my physical recovery. I go twice a week to PT where I am working on small but important exercises. My hips seem to be the weakest and I have trouble doing these exercises even at the lowest level. Three months in bed isn't good for you, for sure.
Just before I came down with the pneumonia problem three months ago I had walked around my block. Now I am starting all over by just walking to the mailbox and back (about 30 yards). I made it three times today.
I actually feel great with no pain and I have an anticipation of getting stronger each day. I am still taking 19 pills each day and it is a good thing Karen fills my pill boxes and does the reordering when needed.
My neuropothy is about the same so it feels as if I am walking on loose pebbles. My balance is terrible and I can't stand on one foot for more than a few seconds. I am told this may improve slightly with time. I am lucky that I don't have any pain as many others do.
I have been on steroids permanently as it appears they are the only thing that keeps that terrible rash away. I do NOT want that to return. The side effects of steroids however, are not good. I went in for a mammogram last week. I didn't think it was painful at all and I got a clean bill on the results.
A few weeks ago I got the last of my childhood immunizations so I'm cleared to start first grade. Hahaha.
Karen and I are amazed at all we have had to go through these last two years ... my diagnosis on stage four lymphoma with a 20% chance of survival, Lyme disease, a pulmonary embolism, spinal meningitis, stem cell transplant, pneumonia, body rash and cerebral amyloid angiopathy (when I lost my memory). Nowhere to go but up from now on.
Since it has been some time since I have thanked you for your concern about me, I must do it again now. Each of you give me consolation and spur me on to work hard at my recovery. You have played such a huge part in my recovery that I could not have made it without your help. THANK YOU ALL!
I see it has been six weeks since I last updated so it is definitely time to bring you up on my current condition.
Nothing new on the cancer front, and apparently the cancer is in remission for now. If it will just stay there for another four years I will most probably be totally out of the woods. That will be a major milestone, of course.
Since I returned home from the hospital last month I have been working on my physical recovery. I go twice a week to PT where I am working on small but important exercises. My hips seem to be the weakest and I have trouble doing these exercises even at the lowest level. Three months in bed isn't good for you, for sure.
Just before I came down with the pneumonia problem three months ago I had walked around my block. Now I am starting all over by just walking to the mailbox and back (about 30 yards). I made it three times today.
I actually feel great with no pain and I have an anticipation of getting stronger each day. I am still taking 19 pills each day and it is a good thing Karen fills my pill boxes and does the reordering when needed.
My neuropothy is about the same so it feels as if I am walking on loose pebbles. My balance is terrible and I can't stand on one foot for more than a few seconds. I am told this may improve slightly with time. I am lucky that I don't have any pain as many others do.
I have been on steroids permanently as it appears they are the only thing that keeps that terrible rash away. I do NOT want that to return. The side effects of steroids however, are not good. I went in for a mammogram last week. I didn't think it was painful at all and I got a clean bill on the results.
A few weeks ago I got the last of my childhood immunizations so I'm cleared to start first grade. Hahaha.
Karen and I are amazed at all we have had to go through these last two years ... my diagnosis on stage four lymphoma with a 20% chance of survival, Lyme disease, a pulmonary embolism, spinal meningitis, stem cell transplant, pneumonia, body rash and cerebral amyloid angiopathy (when I lost my memory). Nowhere to go but up from now on.
Since it has been some time since I have thanked you for your concern about me, I must do it again now. Each of you give me consolation and spur me on to work hard at my recovery. You have played such a huge part in my recovery that I could not have made it without your help. THANK YOU ALL!
Friday Aug 12
Yesterday a meeting concluded I need a home inspection to insure my mobility will be good enough to go home. If acceptable I could go home as early as Wednesday or Thursday. My muscles are still extremely weak and I need months of exercise. Where I used to use 135 lbs for curls I now use 5. Same for stamina. At least I am making progress.
I have a meeting with my cancer doctor the first of next month. More news then.
Yesterday a meeting concluded I need a home inspection to insure my mobility will be good enough to go home. If acceptable I could go home as early as Wednesday or Thursday. My muscles are still extremely weak and I need months of exercise. Where I used to use 135 lbs for curls I now use 5. Same for stamina. At least I am making progress.
I have a meeting with my cancer doctor the first of next month. More news then.
August 5th,
Todays visit with the doctor gave me some good news. While not saying the cancer is not back, he cannot deny that it might not have returned. I may have conjunctive heart failure, a blood disorder or all my drugs fighting each other.
The plan is to watch closely and then remove an entire node for dissection. So no other news for a couple of months.
Thanks for checking in
Todays visit with the doctor gave me some good news. While not saying the cancer is not back, he cannot deny that it might not have returned. I may have conjunctive heart failure, a blood disorder or all my drugs fighting each other.
The plan is to watch closely and then remove an entire node for dissection. So no other news for a couple of months.
Thanks for checking in
August 1, 2016
Dear family and friends,
I am finally feeling well enough to use my computer and my long story is this...
My recovery had been going great and toward the end of June Karen drove me up to to the top of the hill and I took a ten minute bike ride and I felt just great. Shortly after this I had another attack of temporary global amnesia and went right to the emergency room where I spent a few days of tests. The end result was I was released for home and told not to come back as they have no cure.
I was given a drug to combat seizures.
In about two hours i couldn't stay awake. This went on for three weeks when I couldn't think, couldn't read or watch tv and just slept 14-16 hours a day. Karen finally put her foot down and had the Dr take me off the drug.
Next , I was coughing badly and it was back to the doctor who sent me for a chest xray. At 6pm she called and told me to go to the emergency room for either pneumonia or a return of my cancer.
After a terrible week in the hospital they took a biopsy of some enlarged "hot" lymph nodes. I will get the results next Friday. Now I am in a recovery facility getting therapy to improve my condition from a 21 lb water weight gain.
I have to take diuretics and cannot get further than 30 seconds from a toilet.
I will write again next Friday with results.
Dear family and friends,
I am finally feeling well enough to use my computer and my long story is this...
My recovery had been going great and toward the end of June Karen drove me up to to the top of the hill and I took a ten minute bike ride and I felt just great. Shortly after this I had another attack of temporary global amnesia and went right to the emergency room where I spent a few days of tests. The end result was I was released for home and told not to come back as they have no cure.
I was given a drug to combat seizures.
In about two hours i couldn't stay awake. This went on for three weeks when I couldn't think, couldn't read or watch tv and just slept 14-16 hours a day. Karen finally put her foot down and had the Dr take me off the drug.
Next , I was coughing badly and it was back to the doctor who sent me for a chest xray. At 6pm she called and told me to go to the emergency room for either pneumonia or a return of my cancer.
After a terrible week in the hospital they took a biopsy of some enlarged "hot" lymph nodes. I will get the results next Friday. Now I am in a recovery facility getting therapy to improve my condition from a 21 lb water weight gain.
I have to take diuretics and cannot get further than 30 seconds from a toilet.
I will write again next Friday with results.
Wednesday February 24th
Just an update to let you know I am recovering nicely. I can ride my exercycle for 20 minutes now and my stamina is increasing a tiny bit every day.
My cardiologist is extremely happy with my progress and says my blood work is perfect! Great news!
I continue to be in awe of all of you who follow my blog and offer so much support to me. I totally appreciate all your good wishes and prayers. I could not have done this without you.
Just an update to let you know I am recovering nicely. I can ride my exercycle for 20 minutes now and my stamina is increasing a tiny bit every day.
My cardiologist is extremely happy with my progress and says my blood work is perfect! Great news!
I continue to be in awe of all of you who follow my blog and offer so much support to me. I totally appreciate all your good wishes and prayers. I could not have done this without you.
Wednesday December 23rd
YAHOO! MORE GOOD NEWS!
Today my oncologist told us that the nodes in my lungs have greatly receded and that shows they were not the cancer returning. He does not know what they were (possibly a reaction to all the medication) but things look good. He does not need to see me for another six months and then we will just see how things are going. He will be checking me every six months from now on.
Is this a happy day, or WHAT!
We will watch for my cough and my rash to stay away as they are the most lingering problems. My unsteadiness and tremors remain, but those are both livable.
I once again thank you ALL for the prayers and good wishes. They WORKED!
Now to get back into shape. I am able to walk for 25 minutes now and will keep it up until I can go for an hour. And then I'm going to try getting back on my bicycle.
I can't wait....
YAHOO! MORE GOOD NEWS!
Today my oncologist told us that the nodes in my lungs have greatly receded and that shows they were not the cancer returning. He does not know what they were (possibly a reaction to all the medication) but things look good. He does not need to see me for another six months and then we will just see how things are going. He will be checking me every six months from now on.
Is this a happy day, or WHAT!
We will watch for my cough and my rash to stay away as they are the most lingering problems. My unsteadiness and tremors remain, but those are both livable.
I once again thank you ALL for the prayers and good wishes. They WORKED!
Now to get back into shape. I am able to walk for 25 minutes now and will keep it up until I can go for an hour. And then I'm going to try getting back on my bicycle.
I can't wait....
Wednesday December 16th
My next procedure will be the 22nd for another CAT scan and a review with the doctor on the 23rd. I will update after my exam.
Thanks for checking in.
My next procedure will be the 22nd for another CAT scan and a review with the doctor on the 23rd. I will update after my exam.
Thanks for checking in.
Friday December 11th
4:00 PM
My oncologist is pleased (as are we) that the scan is not showing any cancer. However (there is always an however) he wants to take another chest scan in a month to see if there has been any change. It may be that I will have to have an operation to remove a node or two for a better look.
At any rate, it's party time until next month!!!!!
10:08am I just received a great email from my oncologist:
"I would like to get blood work after our appointment at 2:30 today to do some additional testing- lung biopsy without lymphoma but will talk more about that today."
I will get more on my condition when I go to the appointment and will get the news to you ASAP, probably after 4:30 my time.
Hooray!!!!
4:00 PM
My oncologist is pleased (as are we) that the scan is not showing any cancer. However (there is always an however) he wants to take another chest scan in a month to see if there has been any change. It may be that I will have to have an operation to remove a node or two for a better look.
At any rate, it's party time until next month!!!!!
10:08am I just received a great email from my oncologist:
"I would like to get blood work after our appointment at 2:30 today to do some additional testing- lung biopsy without lymphoma but will talk more about that today."
I will get more on my condition when I go to the appointment and will get the news to you ASAP, probably after 4:30 my time.
Hooray!!!!
Friday December 4th
I have been coughing for the last two weeks so I was sent in for a chest CAT scan and two days ago my oncologist called me in to discuss the results. It turns out I have many enlarged lymph nodes in my lungs and he is concerned.
There are a couple of possibilities for the reason these lymph nodes are appearing. One reason is a disease called sarcoidosis which is an autoimmune disease, and while not curable, is manageable.
The other, and more serious possibility, is that my cancer has returned. Since I have already been through massive chemo treatments, that procedure is not possible again. And now for the bad news...IF it is a return of my aggressive cancer, there is not much that can be done for me except for some possible clinical trials of new drugs.
When I asked about the progression of the cancer IF that is what I have, then my survival rate is calculated in months.
Needless to say I will be on edge until I get the results of the biopsy next Friday the 11th.
This will be a scary waiting time but I know you are all pulling for me.
As soon as I find out the prognosis, I will let you all know.
Let us all hope for the best.
Friday the 13th
Today we met with my oncologist at RI hospital for a quick check up. Everything went fine as we had anticipated and he doesn't have to see me until the second week in December.
I can go to restaurants now and am cleared to fly as long as I wear a mask and gloves. (Will probably scare all the other passengers)
As a clarification he says that my cancer is in remission, not cured. I won't get a cleared rating until five years have passed. Oh, well, I'm happy now anyway.
I'm afraid I won't have anything else to report unless something goes wrong and I don't anticipate that happening.
Therefore, I will hold off on updates until December 4th when I have my next appointment in Boston.
Thanks for checking in, you all!
Dave
Today we met with my oncologist at RI hospital for a quick check up. Everything went fine as we had anticipated and he doesn't have to see me until the second week in December.
I can go to restaurants now and am cleared to fly as long as I wear a mask and gloves. (Will probably scare all the other passengers)
As a clarification he says that my cancer is in remission, not cured. I won't get a cleared rating until five years have passed. Oh, well, I'm happy now anyway.
I'm afraid I won't have anything else to report unless something goes wrong and I don't anticipate that happening.
Therefore, I will hold off on updates until December 4th when I have my next appointment in Boston.
Thanks for checking in, you all!
Dave
Friday 6 November
NO MORE CANCER !
Good news all around today!
I completed a test on my muscles involving having a needle stuck into many positions on my leg and then jolting me with an electric shock. I don't know why waterboarding was such a big deal after undergoing the pain of this test as all I can say is "ouch".
I then saw my cancer expert who said they were absolutely amazed at my blood work as everything is totally back to normal. No trace of cancer and all my platelets are normal. She says I can ditch the gloves and mask (but be careful) and I can go to restaurants (no joints or pubs) and eat out. I am even cleared for a beer or two so long as I don't over do it. WOW! Am I ever excited!
They agree that being in good shape before I started all this treatment, having a HUGE support team and keeping a positive attitude made all the difference in my journey. Once again I must thank each and every one of you for your strong support.
I have to return in 30 days for a look but it is really just routine. There is really no reason for me to come in.
In nine months I have to start immunizations against all the diseases just like an infant. When I complete all of these I will be totally back to normal.
I must continue to work on my balance problem and getting back into shape. I must increase my cardio capability and I hope get back to be able to ride my bike again. I can hardly wait!
WHAT GOOD NEWS!
Dave
NO MORE CANCER !
Good news all around today!
I completed a test on my muscles involving having a needle stuck into many positions on my leg and then jolting me with an electric shock. I don't know why waterboarding was such a big deal after undergoing the pain of this test as all I can say is "ouch".
I then saw my cancer expert who said they were absolutely amazed at my blood work as everything is totally back to normal. No trace of cancer and all my platelets are normal. She says I can ditch the gloves and mask (but be careful) and I can go to restaurants (no joints or pubs) and eat out. I am even cleared for a beer or two so long as I don't over do it. WOW! Am I ever excited!
They agree that being in good shape before I started all this treatment, having a HUGE support team and keeping a positive attitude made all the difference in my journey. Once again I must thank each and every one of you for your strong support.
I have to return in 30 days for a look but it is really just routine. There is really no reason for me to come in.
In nine months I have to start immunizations against all the diseases just like an infant. When I complete all of these I will be totally back to normal.
I must continue to work on my balance problem and getting back into shape. I must increase my cardio capability and I hope get back to be able to ride my bike again. I can hardly wait!
WHAT GOOD NEWS!
Dave
Friday 30 Oct
Another good day today! Karen and I went to my cardiologist and got another EKG and he spent a long time going over all my lab results and past records. The pronouncement...EXCELLENT! He is very impressed with my progress and is amazed that I have come so far in such a short time. He must have said that three times.
Of course I know what the reason is. It is the tremendous support I have received from all of you with your best wishes and words of encouragement that have kept me going all this time. The final payoff is just months away.
I feel pretty good on this beautiful day here in RI,. It is just under 70 degrees with bright sunshine reflecting off the bay. I really want to get out on my bicycle and go for a long ride and look at all the fall leaves, but I know that isn't going to happen. I think later on I will go downstairs and use my Lifecycle for a few minutes instead. That's about all I can manage yet.
Halloween is tomorrow and Thanksgiving is just around the corner. I am hoping I will be allowed to have a family dinner by then.
Another good day today! Karen and I went to my cardiologist and got another EKG and he spent a long time going over all my lab results and past records. The pronouncement...EXCELLENT! He is very impressed with my progress and is amazed that I have come so far in such a short time. He must have said that three times.
Of course I know what the reason is. It is the tremendous support I have received from all of you with your best wishes and words of encouragement that have kept me going all this time. The final payoff is just months away.
I feel pretty good on this beautiful day here in RI,. It is just under 70 degrees with bright sunshine reflecting off the bay. I really want to get out on my bicycle and go for a long ride and look at all the fall leaves, but I know that isn't going to happen. I think later on I will go downstairs and use my Lifecycle for a few minutes instead. That's about all I can manage yet.
Halloween is tomorrow and Thanksgiving is just around the corner. I am hoping I will be allowed to have a family dinner by then.
Monday 26 Oct
More good news today. My physical therapy nurse (has been coming 2-3 times a week) just declared that I am finished with PT appointments. I was able to pass enough of the exercises that I can continue on my own. I have to learn balance all over again so I stand with one foot in front of the other and try to hold that for 30 seconds. Then switch feet and do it again. I can't stand on one foot alone for long enough but that is one of the "hard" ones that I can work on. Right now I can only do this one for 3-4 seconds without having to hold on.
My best efforts are standing from a sitting position and repeating this for 20 times. My bicycling has helped me pass this test. I must continue with walking more which will also improve my balance. However my pulmonary problem makes me run out of air and I have to stop after just a few minutes.
I think that since I won't have much to report every day I will switch to updating on Fridays. I have most doctor appointments on Friday so I can update best on that day.
I must repeat that I am SO VERY THANKFUL for the many of you who follow this blog and give me encouragement and hope. I especially thank those of you who have come through your own cancer and can relate directly to my condition. Thank you, thank you, thank you all!
Dave
More good news today. My physical therapy nurse (has been coming 2-3 times a week) just declared that I am finished with PT appointments. I was able to pass enough of the exercises that I can continue on my own. I have to learn balance all over again so I stand with one foot in front of the other and try to hold that for 30 seconds. Then switch feet and do it again. I can't stand on one foot alone for long enough but that is one of the "hard" ones that I can work on. Right now I can only do this one for 3-4 seconds without having to hold on.
My best efforts are standing from a sitting position and repeating this for 20 times. My bicycling has helped me pass this test. I must continue with walking more which will also improve my balance. However my pulmonary problem makes me run out of air and I have to stop after just a few minutes.
I think that since I won't have much to report every day I will switch to updating on Fridays. I have most doctor appointments on Friday so I can update best on that day.
I must repeat that I am SO VERY THANKFUL for the many of you who follow this blog and give me encouragement and hope. I especially thank those of you who have come through your own cancer and can relate directly to my condition. Thank you, thank you, thank you all!
Dave
Monday 19 Oct
Absolutely nothing happened today of any importance. I did some walking and did my PT exercises which mainly consist of trying to stand on one foot at a time. I try to do it with my eyes open and then closed. I can only make it for 2-3 seconds with my eyes closed. This neuropathy makes me feel as if I am standing on pebbles or marshmellow which keep changing the way I perceive the floor. The cancer treatment caused the neuropathy and it is not fixable. I'll just have to learn how to live with it.
Tomorrow we have to drive to Newport medical to get all my medications straightened out. They have changed so many times that we can't keep up.
Almost time for Monday night football!
Absolutely nothing happened today of any importance. I did some walking and did my PT exercises which mainly consist of trying to stand on one foot at a time. I try to do it with my eyes open and then closed. I can only make it for 2-3 seconds with my eyes closed. This neuropathy makes me feel as if I am standing on pebbles or marshmellow which keep changing the way I perceive the floor. The cancer treatment caused the neuropathy and it is not fixable. I'll just have to learn how to live with it.
Tomorrow we have to drive to Newport medical to get all my medications straightened out. They have changed so many times that we can't keep up.
Almost time for Monday night football!
Friday 16 Oct
It was a busy day today with my home nurse arriving at 9 am and checking out my physical skills. Then to a noon appointment with Karen's dermatologist . We waited over an hour and 15 minutes for her to be seen and finally gave up and left. Then drove to Providence for a meeting with my oncologist.
He was also impressed with my blood work and says he forsees no problem with my continued improvement. I will be able to go out to restaurants in another 30 days and can have a beer in 40 days. I can't wait!
In four months or so I will get a PET scan to check that the cancer is really gone. Now that will be a day of celebration!!!
It was a busy day today with my home nurse arriving at 9 am and checking out my physical skills. Then to a noon appointment with Karen's dermatologist . We waited over an hour and 15 minutes for her to be seen and finally gave up and left. Then drove to Providence for a meeting with my oncologist.
He was also impressed with my blood work and says he forsees no problem with my continued improvement. I will be able to go out to restaurants in another 30 days and can have a beer in 40 days. I can't wait!
In four months or so I will get a PET scan to check that the cancer is really gone. Now that will be a day of celebration!!!
Wednesday 14 Oct
I have had a couple of fairly good days and the main problem now is my loss of breath. My pulmonary embolism causes me to run out of breath when I do ANY exertion. Just walking to the mailbox or going up one flight of stairs and I have to stop and catch my breath. It does not seem to me that this clot is dissolving at all.
As promised, here are a few of the absolutely wonderful cards and letters you all have sent to me. They buoy my spirit and I have them where I can see them constantly. No way I can show all the email wishes. Just too many. Some day I hope to answer each one, but that will be much later on.
Below is a picture of the cards.
I have had a couple of fairly good days and the main problem now is my loss of breath. My pulmonary embolism causes me to run out of breath when I do ANY exertion. Just walking to the mailbox or going up one flight of stairs and I have to stop and catch my breath. It does not seem to me that this clot is dissolving at all.
As promised, here are a few of the absolutely wonderful cards and letters you all have sent to me. They buoy my spirit and I have them where I can see them constantly. No way I can show all the email wishes. Just too many. Some day I hope to answer each one, but that will be much later on.
Below is a picture of the cards.
Monday 12 Oct
My visiting nurse claims today that I am making impressive progress. I walked down and then up the stairs and then rode my exercycle with light resistance for three minutes. After the stairs I was a bit winded on the bike. However, I feel much better today than last week.
I took a picture of many of the cards and letters I have received from you wonderful people, but I forgot to download it from my camera. I will try to remember it tomorrow.
Since my discharge from BOS I have had to take a spoonful of the most vile tasting liquid ever devised by man. It has the consistency of thick honey. Twice a day I had to endure this torture, but as my blood work has improved so much I just got switched to a once a day pill. Boy, am I ever happy!!!
Football tonight!!
My visiting nurse claims today that I am making impressive progress. I walked down and then up the stairs and then rode my exercycle with light resistance for three minutes. After the stairs I was a bit winded on the bike. However, I feel much better today than last week.
I took a picture of many of the cards and letters I have received from you wonderful people, but I forgot to download it from my camera. I will try to remember it tomorrow.
Since my discharge from BOS I have had to take a spoonful of the most vile tasting liquid ever devised by man. It has the consistency of thick honey. Twice a day I had to endure this torture, but as my blood work has improved so much I just got switched to a once a day pill. Boy, am I ever happy!!!
Football tonight!!
Friday 9 Oct
Wow! great news today when we found out my blood work was over the moon! Everything they tested was into the normal category and I don't have to have any more transfusions. I don't even have to come back for a full month (which is great because getting into BOS is a pain).
I can now visit with two or three friends as long as they are well and I have on a mask and gloves. We will be able to see the grand kids again which we have missed terribly.
I am still a bit tired, but feeling slightly improved from the last few days.
After another 30 days I can go to restaurants (with restrictions) and after 45 days more I can have a beer! HOORAY!
All in all a super day.
Wow! great news today when we found out my blood work was over the moon! Everything they tested was into the normal category and I don't have to have any more transfusions. I don't even have to come back for a full month (which is great because getting into BOS is a pain).
I can now visit with two or three friends as long as they are well and I have on a mask and gloves. We will be able to see the grand kids again which we have missed terribly.
I am still a bit tired, but feeling slightly improved from the last few days.
After another 30 days I can go to restaurants (with restrictions) and after 45 days more I can have a beer! HOORAY!
All in all a super day.
Thursday, 8th Oct
Sorry to take so long to write again but I had a few more bad days. However, today I am much improved and even rode my life cycle for five minutes PLUS walking to the mailbox at the end of the street.
Tomorrow we see my transplant oncologist in BOS and he will outline how I am doing and what safety procedures I have to follow for the next month. I hope to be able to have friends over or visit them if I have a mask and gloves.
My main problem seems to be an unsteady gut or stomach. Other than that the tired feeling is getting less. I even ate a good dinner yesterday.
I will write as soon as I get home from the BOS traffic tomorrow afternoon.
Saturday Oct 3rd
I've had a quiet day today just watching TV. I feel a bit less well than yesterday so I just decided to take it easy. I received several more very nice letters and emails and hope to start answering as many as I can soon.
In my quest for an evening cocktail I put together 1/2 ginger ale, 1/2 tonic and a large slice of lime. No booze allowed yet. It was a fairly passable drink.
Sorry to take so long to write again but I had a few more bad days. However, today I am much improved and even rode my life cycle for five minutes PLUS walking to the mailbox at the end of the street.
Tomorrow we see my transplant oncologist in BOS and he will outline how I am doing and what safety procedures I have to follow for the next month. I hope to be able to have friends over or visit them if I have a mask and gloves.
My main problem seems to be an unsteady gut or stomach. Other than that the tired feeling is getting less. I even ate a good dinner yesterday.
I will write as soon as I get home from the BOS traffic tomorrow afternoon.
Saturday Oct 3rd
I've had a quiet day today just watching TV. I feel a bit less well than yesterday so I just decided to take it easy. I received several more very nice letters and emails and hope to start answering as many as I can soon.
In my quest for an evening cocktail I put together 1/2 ginger ale, 1/2 tonic and a large slice of lime. No booze allowed yet. It was a fairly passable drink.
Friday Oct 2nd
We had a nice visit with my oncologist today and he is very pleased with my progress. My blood work is heading back to normal and today was the first day of feeling slightly better. I was able to walk for three minutes and got dressed (well, almost) by myself. A major achievement to me I must say.
Next Friday we go back to Boston to meet my transplant doctor and he will be able to give me his take on my progress. As far as we can guess the cancer is not seen, but I will need many more tests to confirm this. We will continue to hope for the best.
Your cards, emails, letters and calls are absolutely the BEST! I have a bunch on nickels which will go to Dana-Barber and the cancer center when we go up there next Friday. Thank you, thank you, thank you!
Until next time....
We had a nice visit with my oncologist today and he is very pleased with my progress. My blood work is heading back to normal and today was the first day of feeling slightly better. I was able to walk for three minutes and got dressed (well, almost) by myself. A major achievement to me I must say.
Next Friday we go back to Boston to meet my transplant doctor and he will be able to give me his take on my progress. As far as we can guess the cancer is not seen, but I will need many more tests to confirm this. We will continue to hope for the best.
Your cards, emails, letters and calls are absolutely the BEST! I have a bunch on nickels which will go to Dana-Barber and the cancer center when we go up there next Friday. Thank you, thank you, thank you!
Until next time....
Oct 1st
Sorry for no updates in a while but I have barely been able to get out of bed for the last few days. Today I feel a bit better. I am going to the doctors this afternoon and tomorrow so may have something to report tomorrow evening. Until now I will just enjoy feeling a bit better.
Don't forget to check out the new "Thank You" page on the menu bar.
Sorry for no updates in a while but I have barely been able to get out of bed for the last few days. Today I feel a bit better. I am going to the doctors this afternoon and tomorrow so may have something to report tomorrow evening. Until now I will just enjoy feeling a bit better.
Don't forget to check out the new "Thank You" page on the menu bar.
Saturday Sept 25th
Now that I am back home I had anticipated being able to write more often. However, my body just won't cooperate and leaves me to weak to do that. I can't even walk up one floor only in the house without having to stop and wheeze when I get up.
I want to thank each of you for taking the time to check in and for sending me all your good wishes. I love it!
Check out my new page using the link above for more thanks.
Dave
Now that I am back home I had anticipated being able to write more often. However, my body just won't cooperate and leaves me to weak to do that. I can't even walk up one floor only in the house without having to stop and wheeze when I get up.
I want to thank each of you for taking the time to check in and for sending me all your good wishes. I love it!
Check out my new page using the link above for more thanks.
Dave
Tuesday Sep 22
Today has been so nice to smell the sea breeze and be back in my own home with Karen. I have really missed it all.
I'm sill very weak and tired and have hundreds of your emails to go through (SO GREAT). I will start writing again as soon as I can.
Today has been so nice to smell the sea breeze and be back in my own home with Karen. I have really missed it all.
I'm sill very weak and tired and have hundreds of your emails to go through (SO GREAT). I will start writing again as soon as I can.
Sunday 20 Sep
SUCCESS!! GREAT NEWS TODAY!!!
Got word that my treatment has been so good that I can go home tomorrow! WOW! My cells have exceeded the magic number so I can go home to continue my recovery. AMAZINGOMG!!! I can check out tomorrow PM and go home early in the afternoon.
YOUR PRAYERS and good wishes did the trick!!! I am so excited !!!!!
I will be in isolation for a few weeks at home but can soon have visitors outside. HOORAY!
More news when I'm not so excited!!!
Dave
SUCCESS!! GREAT NEWS TODAY!!!
Got word that my treatment has been so good that I can go home tomorrow! WOW! My cells have exceeded the magic number so I can go home to continue my recovery. AMAZINGOMG!!! I can check out tomorrow PM and go home early in the afternoon.
YOUR PRAYERS and good wishes did the trick!!! I am so excited !!!!!
I will be in isolation for a few weeks at home but can soon have visitors outside. HOORAY!
More news when I'm not so excited!!!
Dave
Sat 19 SepThis email is from my emergency standby secretary, Michael.
I apologize for not writing, but I have been so sick that I just physically can't write. Yesterday my blood platelets went to zero, hence why I have been so sick. Tomorrow or the day after we think that the platelets will start to improve, and in 2 or 3 days, I will have enough platelets to feel better. The doctors say there is a chance that I will even be well enough to leave the hospital by Wednesday or Thursday. I hope to start writing again by then.
I want to thank all of you for your wonderful cards, your emails of encouragement and for just being great friends. While this has been a terrible week, I see the light at the end of the tunnel.
Thank you all,
Dave=============
I feel slightly (5%) better today. Still have 3-5 days of these bad feelings and then SLOWLY improving. I managed to eat a BP&J for lunch and kept it down. Karen and Mike came to visit. Mike was doing his weapons qualification training again and was just north of Boston.
Thanks for checking in, all my friends and family.
I apologize for not writing, but I have been so sick that I just physically can't write. Yesterday my blood platelets went to zero, hence why I have been so sick. Tomorrow or the day after we think that the platelets will start to improve, and in 2 or 3 days, I will have enough platelets to feel better. The doctors say there is a chance that I will even be well enough to leave the hospital by Wednesday or Thursday. I hope to start writing again by then.
I want to thank all of you for your wonderful cards, your emails of encouragement and for just being great friends. While this has been a terrible week, I see the light at the end of the tunnel.
Thank you all,
Dave=============
I feel slightly (5%) better today. Still have 3-5 days of these bad feelings and then SLOWLY improving. I managed to eat a BP&J for lunch and kept it down. Karen and Mike came to visit. Mike was doing his weapons qualification training again and was just north of Boston.
Thanks for checking in, all my friends and family.
Monday 14 Sep
I feel terrible. My blood count had now dropped to 32K from 100k and I am totally weak. Then this morning they found I am not peeing. Now I am back on drips and having to go every 20 minutes or so. If I begin to drop down in exit volume they will have to look at my kidneys. I hope we don't get that far as the kidneys are dangerous.
In five days I will start to feel better. I can't wait!
Karen had all the heating vents professionally cleaned and sanitized. Good thing as he found some mold
I feel terrible. My blood count had now dropped to 32K from 100k and I am totally weak. Then this morning they found I am not peeing. Now I am back on drips and having to go every 20 minutes or so. If I begin to drop down in exit volume they will have to look at my kidneys. I hope we don't get that far as the kidneys are dangerous.
In five days I will start to feel better. I can't wait!
Karen had all the heating vents professionally cleaned and sanitized. Good thing as he found some mold
Sunday 13 Sep
At least I can watch football all day again. I had a scare when all TV was out when I first turned it on. Maintenance fixed it in about 20 minutes. Phew!
Karen came up today and changed out my clothes. I still feel terrible and couldn't talk much. I will start to feel better in a week I am told. Until then, gut it out.
At least I can watch football all day again. I had a scare when all TV was out when I first turned it on. Maintenance fixed it in about 20 minutes. Phew!
Karen came up today and changed out my clothes. I still feel terrible and couldn't talk much. I will start to feel better in a week I am told. Until then, gut it out.
Saturday 12 Sep
Sorry, just started to write when overcome with unrest. Maybe later?
Sorry, just started to write when overcome with unrest. Maybe later?
Friday 11 Sept
Having a bad day today and the doctors say my platelets still have a couple of days to shrink which will cause me additional discomfort. I am really tired of two injections in my stomach each day. Each hurts like the dickens and forms a large dark bruise. I can barely see the skin on my abdomen.
Karen and I are so thankful that we did not take our scheduled flight from Boston back to LA on 9/11, but went home a day early instead.
We cherish our family and friends and have great joy that we can still spend our time together.
Fate intervened in a good way.
http://media.nbcnewyork.com/images/652*367/wtc+rainbow+9+10.png
Having a bad day today and the doctors say my platelets still have a couple of days to shrink which will cause me additional discomfort. I am really tired of two injections in my stomach each day. Each hurts like the dickens and forms a large dark bruise. I can barely see the skin on my abdomen.
Karen and I are so thankful that we did not take our scheduled flight from Boston back to LA on 9/11, but went home a day early instead.
We cherish our family and friends and have great joy that we can still spend our time together.
Fate intervened in a good way.
http://media.nbcnewyork.com/images/652*367/wtc+rainbow+9+10.png
Thurs 10 Sep
I had a mildly bad day today until about 7 pm when I started to feel better. I was happy for that as I have beeen watching the Patriots game.
I may have confused you with a previous message. Yes, I have completed the chemo but it will remain in my system for a few more days. During this wait I will continue to drop cells until I get to zero. A will feel lousy then until the cells recover to some amount and then thing will improve greatly. I can't wait.
I woke up with a really bad rash but the doctors gave me something that really helped. It is still a bother but I can stand it. Karen had the carpets and the vent ducts cleaned in preparation for my eventual return home.
Thanks for checking in.
I had a mildly bad day today until about 7 pm when I started to feel better. I was happy for that as I have beeen watching the Patriots game.
I may have confused you with a previous message. Yes, I have completed the chemo but it will remain in my system for a few more days. During this wait I will continue to drop cells until I get to zero. A will feel lousy then until the cells recover to some amount and then thing will improve greatly. I can't wait.
I woke up with a really bad rash but the doctors gave me something that really helped. It is still a bother but I can stand it. Karen had the carpets and the vent ducts cleaned in preparation for my eventual return home.
Thanks for checking in.
Wednesday 9 Sep
Another bad day today and I am just now at 8 pm able to get up and do something.
I got an update on my progress this afternoon. I have already had all my blood cells replaced but the chemo will continue until I get totally neutropenic. I will then need about a week to start feeling better as being so low in immunity makes the body want to shut down. So it appears that I have a few more rough days ahead. I'm disappointed.
The nurses congratulated me today for my birthday and I was confused. They tell me since I am now back to being just like a newborn, this is my new birthday. Well, tell that to my present condition!
Another bad day today and I am just now at 8 pm able to get up and do something.
I got an update on my progress this afternoon. I have already had all my blood cells replaced but the chemo will continue until I get totally neutropenic. I will then need about a week to start feeling better as being so low in immunity makes the body want to shut down. So it appears that I have a few more rough days ahead. I'm disappointed.
The nurses congratulated me today for my birthday and I was confused. They tell me since I am now back to being just like a newborn, this is my new birthday. Well, tell that to my present condition!
Tuesday 8 Sep
Sorry, I thought I had avoided the cumulative effect of the chemo, but I was wrong. Really feeling bad today and tonight. Will try again tomorrow....
Sorry, I thought I had avoided the cumulative effect of the chemo, but I was wrong. Really feeling bad today and tonight. Will try again tomorrow....
Labor Day 7 Sep
Last night was not too bad and I slept well. However, at 4:30 the nurse came in to take blood and it took me 1/2 hour later I got back to sleep. At 5:30 the nurses started a shift change and the talking was so loud I couldn't get back to sleep. I came close to punching my call button but decided to let it go. The nurses are awfully nice and competent.
No football I can find today.
Tomorrow is my LAST CHEMO !!! It's a tough one and I have to chew ice all the time I am getting it as the ice helps reduce the erosion in my mouth and throat. My blood count will go down to zero tomorrow (normal 10,000) and then Wednesday I start to get my cells back.
I am seeing the light at the end of the tunnel.
Below is the hit list for this web page. My thanks and most sincere appreciation for all of you who check in.
Last night was not too bad and I slept well. However, at 4:30 the nurse came in to take blood and it took me 1/2 hour later I got back to sleep. At 5:30 the nurses started a shift change and the talking was so loud I couldn't get back to sleep. I came close to punching my call button but decided to let it go. The nurses are awfully nice and competent.
No football I can find today.
Tomorrow is my LAST CHEMO !!! It's a tough one and I have to chew ice all the time I am getting it as the ice helps reduce the erosion in my mouth and throat. My blood count will go down to zero tomorrow (normal 10,000) and then Wednesday I start to get my cells back.
I am seeing the light at the end of the tunnel.
Below is the hit list for this web page. My thanks and most sincere appreciation for all of you who check in.
Sunday 6 Sep
I've had a relatively easy day today. I wasn't hungry until about 10 am and then ordered breakfast and I'm still not hungry at 5 pm. I have been receiving 3 liters of fluid every day and have not gotten rid of it fast enough. I just got a shot that will speed that up. I hope I'm finished before bed time.
My nurse gave Karen a new way to get here to Boston that saved her 20 minutes on the trip home. Our GPS apparently is not up to speed on BOS.
I made a mistake on my chemo days. I will have the same cocktail tomorrow on Monday, and on Tuesday will get a short really strong dose. Then on Wednesday I will star the blood cell infusion. I hope that also means I will be off all these fluid bags. Being tethered to a plastic tube all the time is a pain. I have to push the pole around with me wherever I go.
A good friend reminded me to remember better days and not waste time with all this cancer worry. I did that. See my glory days at http://www.tigerfac.us/vogl.html
Thanks for checking in...
Dave
I've had a relatively easy day today. I wasn't hungry until about 10 am and then ordered breakfast and I'm still not hungry at 5 pm. I have been receiving 3 liters of fluid every day and have not gotten rid of it fast enough. I just got a shot that will speed that up. I hope I'm finished before bed time.
My nurse gave Karen a new way to get here to Boston that saved her 20 minutes on the trip home. Our GPS apparently is not up to speed on BOS.
I made a mistake on my chemo days. I will have the same cocktail tomorrow on Monday, and on Tuesday will get a short really strong dose. Then on Wednesday I will star the blood cell infusion. I hope that also means I will be off all these fluid bags. Being tethered to a plastic tube all the time is a pain. I have to push the pole around with me wherever I go.
A good friend reminded me to remember better days and not waste time with all this cancer worry. I did that. See my glory days at http://www.tigerfac.us/vogl.html
Thanks for checking in...
Dave
Saturday 5 Sept
Below are pictures of my current world. Click to enlarge.
I have to write this morning as I'm just starting the chemo which made me sick yesterday. I thought I could get in a few words before I give up later on. I was able to keep my shoelaces from coming up yesterday but that is about all that remained down.
I get constant drip solutions all day and night. This fills me up with fluid which they now give me medication to get rid of it. I can only go about 45 minutes to an hour before my bladder is full and I have to empty it into a urinal bottle so they can check the amount out.
The doctors just gave me my morning exam. Looks as good as can be expected and three more days of chemo before I start the blood cell transfusion.
I'll get to watch a lot of football today! Hooray!
Thanks for checking in. You are all great friends...
Below are pictures of my current world. Click to enlarge.
I have to write this morning as I'm just starting the chemo which made me sick yesterday. I thought I could get in a few words before I give up later on. I was able to keep my shoelaces from coming up yesterday but that is about all that remained down.
I get constant drip solutions all day and night. This fills me up with fluid which they now give me medication to get rid of it. I can only go about 45 minutes to an hour before my bladder is full and I have to empty it into a urinal bottle so they can check the amount out.
The doctors just gave me my morning exam. Looks as good as can be expected and three more days of chemo before I start the blood cell transfusion.
I'll get to watch a lot of football today! Hooray!
Thanks for checking in. You are all great friends...
Friday Sept 4 th
Not feeling too well right now. Will write later.
Not feeling too well right now. Will write later.
Friday Aug 28
Just notified I go back in to the hospital on Wednesday the 2nd. Hooray!
Thursday Aug 27th
I'm still waiting for a call back from the hospital as to the date I can return for my transplant. I heard from one source that my primary oncologist is now on vacation since I missed my planned entry date. I'll let you know...
Just notified I go back in to the hospital on Wednesday the 2nd. Hooray!
Thursday Aug 27th
I'm still waiting for a call back from the hospital as to the date I can return for my transplant. I heard from one source that my primary oncologist is now on vacation since I missed my planned entry date. I'll let you know...
Saturday 22 Aug supplimental
Big problem today!
When the doctor came in to check me out this morning he looked at that rash which had appeared a day or two ago. After consulting with another doctor they decided that it could be shingles but they were not sure. I was discharged after a four hour process and am back at home again. What a waste of time. Everything is delayed.
I still have my Hickman line sticking out of my chest which must be flushed every day. Fun.
So, not shingles I can go back in. Shingles and I'm home until cured in a week or so or possibly months.
Rats!
Big problem today!
When the doctor came in to check me out this morning he looked at that rash which had appeared a day or two ago. After consulting with another doctor they decided that it could be shingles but they were not sure. I was discharged after a four hour process and am back at home again. What a waste of time. Everything is delayed.
I still have my Hickman line sticking out of my chest which must be flushed every day. Fun.
So, not shingles I can go back in. Shingles and I'm home until cured in a week or so or possibly months.
Rats!
Saturday 22 Aug
Yesterday I checked into the hospital at 6pm and headed to my room. It was a huge single room with 3 storage cabinets a large shower in a room that could hold four beds. The nurses were absolutely as fantistic and friendly as I could hope. After MANY tests, pokes and prodding the doctor came in. She gave me an extensive interview covering my entire medical history and gave me a rundown on the chemo I will be getting starting this morning.
The kitchen is open from 7am to 8pm and I can call and order food any time of a very good menu. I had a pizza and settled in to watched some TV until about 10:30. Then the nurse told me I had to move to another room as the doctor didn't like a very small rash on my side and was taking precautions against a virus. Very dangerous in this place where so many do not have any immunity.
Last night was a typical hospital night being awakened for various reasons all night long. I was hooked up to an IV drip all night and I think I only got 3 hours of sleep.
My new room is barely large enough for one bed and has no storage or drawers. All my stuff is piled in bins and I can't find anything easily.
I'll be waiting for my first chemo at 11.
Yesterday I checked into the hospital at 6pm and headed to my room. It was a huge single room with 3 storage cabinets a large shower in a room that could hold four beds. The nurses were absolutely as fantistic and friendly as I could hope. After MANY tests, pokes and prodding the doctor came in. She gave me an extensive interview covering my entire medical history and gave me a rundown on the chemo I will be getting starting this morning.
The kitchen is open from 7am to 8pm and I can call and order food any time of a very good menu. I had a pizza and settled in to watched some TV until about 10:30. Then the nurse told me I had to move to another room as the doctor didn't like a very small rash on my side and was taking precautions against a virus. Very dangerous in this place where so many do not have any immunity.
Last night was a typical hospital night being awakened for various reasons all night long. I was hooked up to an IV drip all night and I think I only got 3 hours of sleep.
My new room is barely large enough for one bed and has no storage or drawers. All my stuff is piled in bins and I can't find anything easily.
I'll be waiting for my first chemo at 11.
Thursday 20 Aug
Today was a rest day to gain some strength. We went to a park, had a nice lunch and then back to the hotel. We had some tea on the patio and just read until dinner time. Now it's time for bed...perchance to dream,,,
Today was a rest day to gain some strength. We went to a park, had a nice lunch and then back to the hotel. We had some tea on the patio and just read until dinner time. Now it's time for bed...perchance to dream,,,
Wednesday 19 Aug
Today was a day of rest. I was able to pump out enough stem cells yesterday that another day of filtering was not needed. So today to celebrate Karen's 73rd birthday we drove up to Maine for a lobster dinner. After 2 1/2 hours of driving we arrived at the recommended restaurant only to find that it was a clam shack operation and not a restaurant.
I bought my lobster and after 20 minutes sat down to eat. It was absolutely the worst lobster I have ever had. It was mostly water inside the shell and the meat was about 1/4 of what I was expecting. Just before we left I asked the waitress what was going on. She said that the lobsters are like that in molting season. Damn! why didn't they tell be that before I spent $35 on that thing.
Back to the car we stopped at LL Bean where Karen found a windbreaker she liked. That store was absolutely packed with customers and many tourists walking through town.
After another 2 hours through the Boston traffic we made it back here.
Tomorrow we will check out a few places in Boston and Friday I enter the hospital.
Tuesday 18 Aug
Today we came in at 7 to start the blood filtering. I had been feeling terrible when I got up but by 10 I was back to normal. It is quite boring and I cannot get up to use the mens room but have to use the bed pan instead.
Some good news now that it is almost 3 pm and I have contributed almost all the bone marrow needed. I may even be released tonight but if I need to come in tomorrow it will only be for a few hours. Karen and I will probably spend tomorrow touring Boston.
I will go in for the transplant on Thursday or Friday depending on how my blood is doing.
Monday 17 Aug
We arrived at the hotel last night late and then had a long check in process to learn the rules and where things are. We had to get up at 5 this morning to make our 6am appointment.
After checking in I got a prep and then had the Hickman catheter implanted in my chest opposite my other one. The implant wasn't bad because I was pretty drugged up. It only hurt when they had trouble pushing the tube up my neck vein.
By about 11 we headed for the blood filtering appointment. They used my new port to start the filtering and I lay there without being able to get up until 5 when they were finished. At 5:30 it was up to the 8th floor to get a shot to boost my cell production. I got the shot at 6. This shot has a side effect of severe diarrhea within two hours so we hustled to the car and headed back to the hotel.
Being too tired to go upstairs we ate in the dining room (we have our own food) and listened to a nice woman playing the harp. Very nice!
We just got to the room at 8. It was a very long day.
Tomorrow more blood work for 7 hours starting at 7am.
Sunday 16 Aug
We just checked in to the hotel we will be using this week. It is really nice, like a small suite and it is provided free by the cancer center. Karen and I will be here for a week until I enter for the transplant.
Tomorrow will be an early get up as we have to be at the hospital at 0600. I will have a 3-4 hour operation to install a port in my chest (don't know why they can't use the one I already have) and then go for a 7 hour blood harvesting. It will be a long day!
I will be getting blood filtering each day for a week for about 7-8 hours each day.
Tuesday 11 Aug
I have a bad rash that started in January and bothers me all the time. Sometimes it is difficult to sleep because all I want to do is scratch.
And now, to make matters worse I have picked up some poison ivy. Just great.
Friday I start my shots for the transplant. Three days of shots and then into the hospital.
Monday July 27th
I apologize for not keeping up with my progress.
On the 15th I went in for another chemo treatment which consisted of a different mix of chemicals than all the other treatments. Since I still had active cancer cells they had to be killed before I go to the Dana-Farber cancer center for my transfusion. Since these were new chemicals I just felt bad for about a week but now I am much improved. I feel OK and my rash has even been a bit less itchy lately (hooray!).
In a few days I will have to stop all alcohol in preparation for my transplant. Tomorrow we go to the hospital for a full day of briefings on my procedure where they will cover all aspects my treatment from cleaning our house to what I can eat. It will be a long day. As usual Stacey (my chief medical minion) will attend so she can make sure everything is moving along just right. Karen (my chief minion) is doing fine and making me take my meds when I forget.
From now on I must be extremely careful not to get any ailment, even a small cold or sore throat. I must be in perfect health when I start treatments on the 14th of August.
Until I go in on the hospital it will be business as usual. No other appointments or treatments. I will update again once the treatments start, assuming I feel good enough to write, that is.
Thanks for checking in. I can't wait until this ordeal is over and your support is just what I need.
We arrived at the hotel last night late and then had a long check in process to learn the rules and where things are. We had to get up at 5 this morning to make our 6am appointment.
After checking in I got a prep and then had the Hickman catheter implanted in my chest opposite my other one. The implant wasn't bad because I was pretty drugged up. It only hurt when they had trouble pushing the tube up my neck vein.
By about 11 we headed for the blood filtering appointment. They used my new port to start the filtering and I lay there without being able to get up until 5 when they were finished. At 5:30 it was up to the 8th floor to get a shot to boost my cell production. I got the shot at 6. This shot has a side effect of severe diarrhea within two hours so we hustled to the car and headed back to the hotel.
Being too tired to go upstairs we ate in the dining room (we have our own food) and listened to a nice woman playing the harp. Very nice!
We just got to the room at 8. It was a very long day.
Tomorrow more blood work for 7 hours starting at 7am.
Sunday 16 Aug
We just checked in to the hotel we will be using this week. It is really nice, like a small suite and it is provided free by the cancer center. Karen and I will be here for a week until I enter for the transplant.
Tomorrow will be an early get up as we have to be at the hospital at 0600. I will have a 3-4 hour operation to install a port in my chest (don't know why they can't use the one I already have) and then go for a 7 hour blood harvesting. It will be a long day!
I will be getting blood filtering each day for a week for about 7-8 hours each day.
Tuesday 11 Aug
I have a bad rash that started in January and bothers me all the time. Sometimes it is difficult to sleep because all I want to do is scratch.
And now, to make matters worse I have picked up some poison ivy. Just great.
Friday I start my shots for the transplant. Three days of shots and then into the hospital.
Monday July 27th
I apologize for not keeping up with my progress.
On the 15th I went in for another chemo treatment which consisted of a different mix of chemicals than all the other treatments. Since I still had active cancer cells they had to be killed before I go to the Dana-Farber cancer center for my transfusion. Since these were new chemicals I just felt bad for about a week but now I am much improved. I feel OK and my rash has even been a bit less itchy lately (hooray!).
In a few days I will have to stop all alcohol in preparation for my transplant. Tomorrow we go to the hospital for a full day of briefings on my procedure where they will cover all aspects my treatment from cleaning our house to what I can eat. It will be a long day. As usual Stacey (my chief medical minion) will attend so she can make sure everything is moving along just right. Karen (my chief minion) is doing fine and making me take my meds when I forget.
From now on I must be extremely careful not to get any ailment, even a small cold or sore throat. I must be in perfect health when I start treatments on the 14th of August.
Until I go in on the hospital it will be business as usual. No other appointments or treatments. I will update again once the treatments start, assuming I feel good enough to write, that is.
Thanks for checking in. I can't wait until this ordeal is over and your support is just what I need.
Wednesday July 8th
Dear family and friends,
Well, some bad news arrived today. My oncologist called to say that I still have cancer. Either it has come back or was missed in previous scans so I'm in for some more chemo. They will give me a different mixture this time in the hopes that it will be gone by the time I undergo the bone marrow transplant beginning in August. Needless to say we are disappointed to say the least. We thought this had been totally wiped out as of two months ago. My schedule is on the calendar link.
My cancer rash continues and causes me hours of itching with no relief. However, I do not want to go back on steroids and that is the price I must pay.
My unsteady gait and loss of balance is apparently due to neuropathy which cannot be cured. It may have been caused by the cancer or the chemo drugs and I hope that the additional chemo does not make it worse.
Lastly, thank you ALL for the fantastic support and well wishes I receive almost every day. Your support really means so much to me and keeps my spirits up.
In a few months (I hope) this will all be over and I can get back to my new normal, whatever that is.
I'll update if anything new crops up.
Dave
Dear family and friends,
Well, some bad news arrived today. My oncologist called to say that I still have cancer. Either it has come back or was missed in previous scans so I'm in for some more chemo. They will give me a different mixture this time in the hopes that it will be gone by the time I undergo the bone marrow transplant beginning in August. Needless to say we are disappointed to say the least. We thought this had been totally wiped out as of two months ago. My schedule is on the calendar link.
My cancer rash continues and causes me hours of itching with no relief. However, I do not want to go back on steroids and that is the price I must pay.
My unsteady gait and loss of balance is apparently due to neuropathy which cannot be cured. It may have been caused by the cancer or the chemo drugs and I hope that the additional chemo does not make it worse.
Lastly, thank you ALL for the fantastic support and well wishes I receive almost every day. Your support really means so much to me and keeps my spirits up.
In a few months (I hope) this will all be over and I can get back to my new normal, whatever that is.
I'll update if anything new crops up.
Dave
Tuesday, June 23rd
An interesting day today when I met with my neurologist and my cancer doctor.
Neurologist – He gave me a thorough exam and gave me a list of possibilities. My brain scan has not changed since the last one and the small bleeds remain (good). He wants to discontinue aspirin now that I am on blood thinners for my pulmonary embolism (thin blood dissolves the clot in my lung). He is afraid the very thin blood increases the likelihood of a stroke by bleeding. However, my cardiologist wants me on blood thinners for anti-clotting for my heart. They will hash it out. I guess it’s a balance from what I will die from.
My tremors are possibly essential tremors (old age) or they could be a precursor to Parkinson’s disease. He increased my medications for the tremors as that may help with the diagnosis if I improve. He has scheduled me for an appointment with a Parkinson’s specialist.
He also suggested that my muscle weakness could be caused by a spinal problem so a full scan of my spine is next on the 5th of July. Since I have had spinal problems before this is a definite possibility.
Oncologist – He took another bone marrow biopsy which wasn’t fun. He ended up having to stick me three times to get enough hip bone for a good test.
He is also giving me another PET (body scan) in another month to confirm all the cancer is gone. As I said, the transplant will have to be done after all these tests are completed successfully.
Stay tuned…
Monday June 22nd
I'm so happy the black spots in my lungs are starting to clear up and I did not have to undergo the lung biopsy! Hooray! They will scan me again in a month to check that all is well. If so, I'll probably be scheduled for the transplant soon after.
Perhaps the spots are a reaction to the chemo but definitely not cancer.
Tomorrow I see the neurologist to see if they can find the source of my instability and tremors. Will let you know later what he says.
I'm so happy the black spots in my lungs are starting to clear up and I did not have to undergo the lung biopsy! Hooray! They will scan me again in a month to check that all is well. If so, I'll probably be scheduled for the transplant soon after.
Perhaps the spots are a reaction to the chemo but definitely not cancer.
Tomorrow I see the neurologist to see if they can find the source of my instability and tremors. Will let you know later what he says.
Friday June 19th
We went to the hospital for an 0730 appointment to get a biopsy from my lung. I was not a happy camper after finding out that a Needle biopsy. After a local anesthetic is given, the doctor uses a needle that is guided through the back and then the chest wall into a suspicious area with computed tomography (CT or CAT scan) or fluoroscopy (a type of X-ray “movie”) to obtain a tissue sample. This type of biopsy may also be referred to as a closed, transthoracic, or percutaneous (through the skin) biopsy.
Before they started the procedure I got a scan of my chest and LO the undefined black spots have shrunk! The biopsy has been postponed until I get another scan in a month. If the spots are gone I can continue with the transplant. Good news.
Tonight it's back to the hospital for a brain scan to try and find out why my balance is so bad, forcing me to lurch from side to side when I walk.
It's just one darned thing after another.
We went to the hospital for an 0730 appointment to get a biopsy from my lung. I was not a happy camper after finding out that a Needle biopsy. After a local anesthetic is given, the doctor uses a needle that is guided through the back and then the chest wall into a suspicious area with computed tomography (CT or CAT scan) or fluoroscopy (a type of X-ray “movie”) to obtain a tissue sample. This type of biopsy may also be referred to as a closed, transthoracic, or percutaneous (through the skin) biopsy.
Before they started the procedure I got a scan of my chest and LO the undefined black spots have shrunk! The biopsy has been postponed until I get another scan in a month. If the spots are gone I can continue with the transplant. Good news.
Tonight it's back to the hospital for a brain scan to try and find out why my balance is so bad, forcing me to lurch from side to side when I walk.
It's just one darned thing after another.
Monday June 15th,
Well, everything is all screwed up. Last Thursday we saw my primary cancer doctor and he told us the results of my recent PET (body) scan now shows I have some strange black spots on my lungs. He says they don't know what the spots are although they do not appear to be cancer. However, he is most concerned that we find out what's going on before I go in for the bone marrow transplant in July. He will be talking with my other doctors before making the final decision, but it appears I will have to undergo some more extensive testing before finishing the cancer treatment including a lung biopsy.
My rash is bothering me a bit less with the anti-itch pills. I hope that it goes away soon.
Please check back in a few days and I may have some more information.
Well, everything is all screwed up. Last Thursday we saw my primary cancer doctor and he told us the results of my recent PET (body) scan now shows I have some strange black spots on my lungs. He says they don't know what the spots are although they do not appear to be cancer. However, he is most concerned that we find out what's going on before I go in for the bone marrow transplant in July. He will be talking with my other doctors before making the final decision, but it appears I will have to undergo some more extensive testing before finishing the cancer treatment including a lung biopsy.
My rash is bothering me a bit less with the anti-itch pills. I hope that it goes away soon.
Please check back in a few days and I may have some more information.
Thursday May 21st
Had my last "normal" chemo of six treatments on Monday and still feeling very tired and listless. However, this will clear up and I will gradually feel better until July when I go in to have my bone marrow transplant. Once that starts I'll be absolutely wiped out for the whole month I'm in isolation. I'm disappointed that I have to go through this as I thought the remission diagnosis was the end of it. But my survival rate will go from 20% to 60% so I have to do it.
I'm still out of breath all the time from a pulmonary embolism. Sometimes run out of breath in the middle of a sentence. This will take six months to get better I'm afraid.
I also have a rash of unknown source that drives me nuts. The anti-ich stuff doesn't work and last night I scratched for over an hour. Phooie!
I'm getting such good words of encouragement from all of you that it really makes me feel better.
I
Had my last "normal" chemo of six treatments on Monday and still feeling very tired and listless. However, this will clear up and I will gradually feel better until July when I go in to have my bone marrow transplant. Once that starts I'll be absolutely wiped out for the whole month I'm in isolation. I'm disappointed that I have to go through this as I thought the remission diagnosis was the end of it. But my survival rate will go from 20% to 60% so I have to do it.
I'm still out of breath all the time from a pulmonary embolism. Sometimes run out of breath in the middle of a sentence. This will take six months to get better I'm afraid.
I also have a rash of unknown source that drives me nuts. The anti-ich stuff doesn't work and last night I scratched for over an hour. Phooie!
I'm getting such good words of encouragement from all of you that it really makes me feel better.
I