Saturday, November 08, 2003
Day +24 If anyone has ever been near someone on a high dose of steroids then you know what it is like to visit John. We call it Prednisone John. Prednisone John is cranky as can be. Doesn't hold back any thought. On the other hand he is open with his feelings and often this is the time I find out what he is really feeling about all this and mostly when Prednisone John is gone I have found we have grown closer than before. In the end it balances out. Of course this morning we had to make sure John got a regular staff member to the unit and not a float nurse or aid. Many BMT patients inevitably have to go on some type of steroid therapy and nurses with experience with this type of patient is a must. The end result is the patient has a nurse that is compassionate and understanding, that has the ability to have most of what the patient is saying go in one ear and out the other. A nurse or aid without this experience become defensive or even worse rude and that can set the steroid patient off. Lucky John he has nurses that know him.
Really not much to report on the Nitty Gritty. Today's doctor has been here at City of Hope for a while and knows Dr. Wolf. That made John happy. She wants him to try and eat. Since John threw up his chicken noodle soup last night that is now off the menu. Today I am going to go get instant mashed potatoes (yes I know, John a chef), but in the past they has gone down easily. As far as his belly pain the treatment they are giving him is working, he is feeling much better. Last night I got a call saying they were confused why they were waiting to do the scope/biopsy. This is the difference between having Dr. Stein and Dr. Wolf. Dr. Stein is not always very good about explaining the details whereas Dr. Wolf always explains and opens up the possibilities for discussion. Just a different style. I believe the reason for the delay is first scheduling as they will have to dope John up for the procedure. Second with this bug he is contagious and if the doctor accidentally perforates John's colon they can spread the contained bacteria systemically. So I believe partly it is a safety issue. The procedure also can be delayed because with the particular treatment John is on right now has arrested any further damage to the intestines if in fact it does turn out to be GVHD so they have bought a few days respite before confirmation.
Really not much to report on the Nitty Gritty. Today's doctor has been here at City of Hope for a while and knows Dr. Wolf. That made John happy. She wants him to try and eat. Since John threw up his chicken noodle soup last night that is now off the menu. Today I am going to go get instant mashed potatoes (yes I know, John a chef), but in the past they has gone down easily. As far as his belly pain the treatment they are giving him is working, he is feeling much better. Last night I got a call saying they were confused why they were waiting to do the scope/biopsy. This is the difference between having Dr. Stein and Dr. Wolf. Dr. Stein is not always very good about explaining the details whereas Dr. Wolf always explains and opens up the possibilities for discussion. Just a different style. I believe the reason for the delay is first scheduling as they will have to dope John up for the procedure. Second with this bug he is contagious and if the doctor accidentally perforates John's colon they can spread the contained bacteria systemically. So I believe partly it is a safety issue. The procedure also can be delayed because with the particular treatment John is on right now has arrested any further damage to the intestines if in fact it does turn out to be GVHD so they have bought a few days respite before confirmation.
Friday, November 07, 2003
Day +23 Last night John had a dream where he was in his own home (not Albany, his own familiar dream home) and there were people outside his house wanting to come in to begin a war. Trouble was when he gathered his troops and went to the weapons supply the weapons were missing. One of the trusted soldiers on the inside of his house "fucked him over" as John puts it. The reason I even mention the dream is I think it speaks volumes of what John is feeling right now.
Now to the Nitty Gritty. John's stool culture was positive for a bacteria called C-Difficle. This germ is often caused when ones system has been overloaded with antibiotics. It also can be a sign of early GVHD. Unfortunately they have decided to postpone the biopsy/scope until Tuesday so we must be patient to either confirm or rule out GVHD until then. In the meantime they are assuming the C-Diff is from GVHD and treating both with antibiotics and steroids. The new feature of John having this C-Diff is anyone visiting John, must put on a gown, gloves and mask to visit him. It is called "contact isolation" to help prevent the spread of the bacteria. I called Liz one of the wonderful Alta Bates nurses and she said it is not a big deal. She actually is surprised he has not had it before as many hospital patients come down with this bacteria.
The end result with the medication is John is much better. He is awake again, which I am not sure is always fun for me, especially John on steroids. The steroids make him a little cranky and loudly opinionated. Just call him and ask his opinion on him having to leave his room and go to radiology instead of having them come to him. As I am typing this I am listening to quite the diatribe of how unfair that is. He is also feeling better, because he is saying in about five minutes he would like to go feed the fish. This means dressing him up in layers of clothes, finishing it off with the bright yellow isolation gown, gloves and a thick mask (so as to not spread the C-Diff to anyone else). I would say he is feeling better. He is even spitting less (please make that stop!!).
Now to the Nitty Gritty. John's stool culture was positive for a bacteria called C-Difficle. This germ is often caused when ones system has been overloaded with antibiotics. It also can be a sign of early GVHD. Unfortunately they have decided to postpone the biopsy/scope until Tuesday so we must be patient to either confirm or rule out GVHD until then. In the meantime they are assuming the C-Diff is from GVHD and treating both with antibiotics and steroids. The new feature of John having this C-Diff is anyone visiting John, must put on a gown, gloves and mask to visit him. It is called "contact isolation" to help prevent the spread of the bacteria. I called Liz one of the wonderful Alta Bates nurses and she said it is not a big deal. She actually is surprised he has not had it before as many hospital patients come down with this bacteria.
The end result with the medication is John is much better. He is awake again, which I am not sure is always fun for me, especially John on steroids. The steroids make him a little cranky and loudly opinionated. Just call him and ask his opinion on him having to leave his room and go to radiology instead of having them come to him. As I am typing this I am listening to quite the diatribe of how unfair that is. He is also feeling better, because he is saying in about five minutes he would like to go feed the fish. This means dressing him up in layers of clothes, finishing it off with the bright yellow isolation gown, gloves and a thick mask (so as to not spread the C-Diff to anyone else). I would say he is feeling better. He is even spitting less (please make that stop!!).
Thursday, November 06, 2003
Day + 22 John's tummy continues to give him problems. After having incredible fatigue yesterday (he didn't even walk or have energy to shower) John started the evening by running a fever. The fever wasn't very high, slightly lower than 101, but he was up all night with cramps, pain and the trots. Even giving him the anti-nausea and anti-diarrhea medicine wasn't helpful. So today Dr. Stein called in the stomach doctor (who I think has to be a twin of the cardiac doctor) who has decided in order to figure this out they must take samples of intestines and look at his esophagus. Tomorrow John is scheduled for this procedure. I will update as soon as I get results.
In the meantime, John continues to vomit or at least dry heave because he is not eating again, and they have sent samples to the lab to test for bacteria. This mornings WBC count was elevated to 11.9 (normal is 4.0 - 11.0), this WBC count is a significant increase from the 2.4 of yesterday. Dr. Stein is not messing around and treating the symptoms as both an intestinal infection or GVHD. Now I know having GVHD can be really crummy, but the nurses are reassuring me that they want John to have a little bit of the disease so the the graft fights any leukemia John's marrow decides to make. The best cure rates from a BMT are with patients exhibiting some GVHD. However, this is all we want. Severe GVHD is almost as bad as having leukemia, it can make ones life miserable. The medicines to fight GVHD are really tough on the liver and kidneys. They have put John on both an anti-biotic and steroids. The steroids will make John cranky, but I think I will have to turn a deaf ear to his tone for a few days in order for him to fight this part of the treatment. I really hope this is nothing, and easily handled.
In the meantime, John continues to vomit or at least dry heave because he is not eating again, and they have sent samples to the lab to test for bacteria. This mornings WBC count was elevated to 11.9 (normal is 4.0 - 11.0), this WBC count is a significant increase from the 2.4 of yesterday. Dr. Stein is not messing around and treating the symptoms as both an intestinal infection or GVHD. Now I know having GVHD can be really crummy, but the nurses are reassuring me that they want John to have a little bit of the disease so the the graft fights any leukemia John's marrow decides to make. The best cure rates from a BMT are with patients exhibiting some GVHD. However, this is all we want. Severe GVHD is almost as bad as having leukemia, it can make ones life miserable. The medicines to fight GVHD are really tough on the liver and kidneys. They have put John on both an anti-biotic and steroids. The steroids will make John cranky, but I think I will have to turn a deaf ear to his tone for a few days in order for him to fight this part of the treatment. I really hope this is nothing, and easily handled.
Wednesday, November 05, 2003
Day + 21 John is still really tired today. His blood work still looks good, has a few elevated amounts of SGPT, SGOT, and Lactate Dehydrogenase which I plan on looking up on the web as soon as I am done writing this update. I think mostly they are liver function tests, his bilirubin is perfect so I know his liver is fine. I am sure he is still just trying to clean the slug and chemo from his system. He feels so crummy and it wears him out.
The rest of the labs are great. John's platelets are 113, before long he will be in the "normal" range of 150. I still am taking the doctor's lead, he does not seem at all concerned about John's belly pain. He thinks John should try to eat, some of the pain is from an empty belly. He is still taking all his pills and because his counts are so good they made him go to radiology for his weekly chest xray instead of doing a portable. That is progress.
This morning I took a drive to do a couple quick errands. I usually take the old Route 66 to the main part of Monrovia and Arcadia where most of the shopping is. This morning I decided to take side streets. I have grown tired of the large wide concrete streets with foot high gutters. Also I am tired of seeing one cement strip mall after the other. So I spontaneously turned right towards the mountain figuring if I get lost as long as I head away from the mountains I should run back into Route 66 and make my way back to the hospital. I'm really glad I did. The houses above Route 66 actually have a neighborhood feel to them, not that Durate doesn't it is that the houses all seem sporadically squashed between one concrete jungle after another. The streets I was driving this morning actually had houses back to back. Many of the houses had front porches and well established large shade trees in front. It reminded me a little like Bishop where my sister Aud lived. The houses looked like they had been there for decades, but were immaculately taken care of. I also discovered a couple old shopping districts on a street that is at the base of the mountains. There was also a really old church with a large steeple I was surprised I did not notice before as it is visible from main street and I found the "History of Monrovia" museum that I planned to take John to once he is sprung from this joint.
Note to Dad: Welcome to the cyber world! I am glad you finally are online and can keep up with John's progress on a daily basis. Hats off to Jen, creator of John's website and our personal computer guru for helping Dad join the 21st century.
The rest of the labs are great. John's platelets are 113, before long he will be in the "normal" range of 150. I still am taking the doctor's lead, he does not seem at all concerned about John's belly pain. He thinks John should try to eat, some of the pain is from an empty belly. He is still taking all his pills and because his counts are so good they made him go to radiology for his weekly chest xray instead of doing a portable. That is progress.
This morning I took a drive to do a couple quick errands. I usually take the old Route 66 to the main part of Monrovia and Arcadia where most of the shopping is. This morning I decided to take side streets. I have grown tired of the large wide concrete streets with foot high gutters. Also I am tired of seeing one cement strip mall after the other. So I spontaneously turned right towards the mountain figuring if I get lost as long as I head away from the mountains I should run back into Route 66 and make my way back to the hospital. I'm really glad I did. The houses above Route 66 actually have a neighborhood feel to them, not that Durate doesn't it is that the houses all seem sporadically squashed between one concrete jungle after another. The streets I was driving this morning actually had houses back to back. Many of the houses had front porches and well established large shade trees in front. It reminded me a little like Bishop where my sister Aud lived. The houses looked like they had been there for decades, but were immaculately taken care of. I also discovered a couple old shopping districts on a street that is at the base of the mountains. There was also a really old church with a large steeple I was surprised I did not notice before as it is visible from main street and I found the "History of Monrovia" museum that I planned to take John to once he is sprung from this joint.
Note to Dad: Welcome to the cyber world! I am glad you finally are online and can keep up with John's progress on a daily basis. Hats off to Jen, creator of John's website and our personal computer guru for helping Dad join the 21st century.
Tuesday, November 04, 2003
Day +20 John continues to recover. His white cells are now a whopping 2.9! John was attending school with white cells at that level. Got news from the doctor when I point blank asked if John was getting out this week. He said, "no." John has to be eating better and he is not ready to take the cyclosporin by mouth. I have trouble understanding why John cannot have the cyclosporin infused IV at the clinic, but Dr. Stein said if he sends him home before he is ready he will return to the unit with raging GVHD. So I for now have shut up and am trying not to pout about John not getting out by Friday. At least now I know we have to tolerate the unit for a while longer. It is not that bad, it would be easier if John in the village, at least a closer facsimile to home. That is my motivation to get him out, plus it would be nice that John get a complete nights rest. He constantly has vitals taken just when he is in a good sleeping rhythm.
John did go outside the unit yesterday for about 5 minutes. It was really too cold and with three shirts and three blankets wrapped around him he needed to come right back in. It was really a symbolic journey outside. Today it is warmer. Perhaps before he showers he can try to go out.
We got a lovely note from the donor today. John and I dropped him a progress note and he responded. He revealed he is a very busy doctor, seeing 40 patients a day and 10 inpatients. He is on call all the time so changing his schedule to donate for John was a really big deal. However, his colleagues all pitched in for John and covered the donors extra shifts so he could prepare and donate. He writes, "because of all this rearranging you had countless people involved in the effort--all hoping the best for you and praying your transplant goes well." It really touches me how so many people have helped John along the way. It is a much bigger wave of effect than anyone can realize. I am sitting here almost crying that so many people who don't even know how great John is have had an active part in curing John. One person could of been a punk and messed it all up, but they didn't. They all worked together to make it possible for the donor to get the shots, and spend two days donating stem cells. Plus I know there was a bit of recovery time as the GCSF (the stem cell stimulating medicine) makes the donor feel like they have the flu with some bone pain. We hope to meet the donor next year, and plan writing him back with a thank you for all the other people involved in cooperating with the schedule changes.
John did go outside the unit yesterday for about 5 minutes. It was really too cold and with three shirts and three blankets wrapped around him he needed to come right back in. It was really a symbolic journey outside. Today it is warmer. Perhaps before he showers he can try to go out.
We got a lovely note from the donor today. John and I dropped him a progress note and he responded. He revealed he is a very busy doctor, seeing 40 patients a day and 10 inpatients. He is on call all the time so changing his schedule to donate for John was a really big deal. However, his colleagues all pitched in for John and covered the donors extra shifts so he could prepare and donate. He writes, "because of all this rearranging you had countless people involved in the effort--all hoping the best for you and praying your transplant goes well." It really touches me how so many people have helped John along the way. It is a much bigger wave of effect than anyone can realize. I am sitting here almost crying that so many people who don't even know how great John is have had an active part in curing John. One person could of been a punk and messed it all up, but they didn't. They all worked together to make it possible for the donor to get the shots, and spend two days donating stem cells. Plus I know there was a bit of recovery time as the GCSF (the stem cell stimulating medicine) makes the donor feel like they have the flu with some bone pain. We hope to meet the donor next year, and plan writing him back with a thank you for all the other people involved in cooperating with the schedule changes.
Monday, November 03, 2003
Day + 19 I have Peets, I have Peets! Jennifer came down this weekend bearing gifts and one of the items is fresh ground Peets. Scott last weekend brought down my coffee pot so I am very happy this morning if not a bit jittery.
Now for the important news. John's white count is up to 1.9! His white cells have not been this high since before the mylotarg treatment. His platelets are 99,000, so I can't threaten to bruise him anymore and his hemoglobin is 10.6! This is all without the help of growth factors like epogen or neupogen. He feels better this morning, had a good nights rest. Dr. Stein told his this morning if he begins eating he is out of here. I hope by Friday!!!!
On the heart front: John's heart has again taken a beating. The echocardiogram results show he has chemo induced cardiomyopathy (a mouthful). It means his heart is slightly enlarged and pumps at 47% of normal. Also the mitral valve is doing something. So they have increased the cardiac meds and John is taking them so his heart function is doing better. John and I are not to worried since this has happened before. The truth is John's heart function recovers at a remarkable rate. After the mylotarg treatment his heart function was at 50% and 6 weeks later his heart function was at 60%. By the time he did his pre transplant testing it had almost returned to normal. His cardiologist in Berkeley says in a year or two he will not have to take any medication and will probably not show any myopathy at all.
Today the nurse is going to disconnect John from his I V for two hours and we are going to bundle him up and go to the coy pond to feed the fish. John is having me buy some coloring books and legos for the children on the unit. We plan on delivering them before John is hooked up again. We are very encouraged by John's progress and I am grateful to all of you who continue to keep John in your good thoughts and prayers.
Now for the important news. John's white count is up to 1.9! His white cells have not been this high since before the mylotarg treatment. His platelets are 99,000, so I can't threaten to bruise him anymore and his hemoglobin is 10.6! This is all without the help of growth factors like epogen or neupogen. He feels better this morning, had a good nights rest. Dr. Stein told his this morning if he begins eating he is out of here. I hope by Friday!!!!
On the heart front: John's heart has again taken a beating. The echocardiogram results show he has chemo induced cardiomyopathy (a mouthful). It means his heart is slightly enlarged and pumps at 47% of normal. Also the mitral valve is doing something. So they have increased the cardiac meds and John is taking them so his heart function is doing better. John and I are not to worried since this has happened before. The truth is John's heart function recovers at a remarkable rate. After the mylotarg treatment his heart function was at 50% and 6 weeks later his heart function was at 60%. By the time he did his pre transplant testing it had almost returned to normal. His cardiologist in Berkeley says in a year or two he will not have to take any medication and will probably not show any myopathy at all.
Today the nurse is going to disconnect John from his I V for two hours and we are going to bundle him up and go to the coy pond to feed the fish. John is having me buy some coloring books and legos for the children on the unit. We plan on delivering them before John is hooked up again. We are very encouraged by John's progress and I am grateful to all of you who continue to keep John in your good thoughts and prayers.
Sunday, November 02, 2003
Day +18 1/2 I feel it important to write a quick follow up before I go to bed. First of all I talk to a friend who is today at Day +200 who had AML M0 like John and a mismatch transplant and doing fantastic. Ed was released as an inpatient on Day +24 and reluctantly gave up his suction machine, still had throat pain. Essentially he gave me a reality check. I felt it was important to talk to someone with experience. He is sure that John is not showing signs of GVHD, when one has it the doctors almost always know before the patient because the blood test (which have been great) reveal it. The patient, especially when it hits the tummy is apparently really horrible, not an occasional twinge and a bit of the runs. It is lots of pain and lots of runs (not John's case at all, yeah). Cheers and thanks to Ed for your inspiration and reassurance today.
John's platelets by this afternoon had gone up another 9,000 to 90,000. According to doctor Wolf he can go rock climbing now as that was his cut off whether John could go or not and Alicia, Dr. Wolf's nurse and our wonderful angel--he gets anything he wants--so he has asked for a pretty brunette!
Lastly, John walked the halls of the unit tonight again, he feels much better than this morning.
John's platelets by this afternoon had gone up another 9,000 to 90,000. According to doctor Wolf he can go rock climbing now as that was his cut off whether John could go or not and Alicia, Dr. Wolf's nurse and our wonderful angel--he gets anything he wants--so he has asked for a pretty brunette!
Lastly, John walked the halls of the unit tonight again, he feels much better than this morning.
Day +17 and +18 Sorry there was no official blog yesterday, but John felt so well he hogged the computer all day and last night! He was busy chatting and playing games. He is regaining some of the strength he lost, even walked around the unit four times yesterday evening (when I could drag him from his game).
John's blood continues to also gain strength. His platelets this morning are 81,000 (normal is 150-300) the highest they have been in a year. He is no longer transfusion dependent because these donor cells are engrafting like magic. The heart medication is working because John's blood pressure is back in the normal range and his heart rate is in the 60's again. He is taking the medication under protest since his throat and esophogus are still raw. Still not eating. He did lose almost 10 pounds of water over the last few days thanks to a much stronger diuretic. This has added to his heart and blood pressure operating better.
On the "it is always something" front. John has been having pretty awful tummy trouble. I am a bit concerned that it is the beginning of some graft vs host disease (from now on known as GVHD). Tummy trouble and pain is one of the most common types of GVHD. I hope I am wrong, it could be morphine withdrawal, but John has been on much higher doses for longer periods and has not had this type of reaction. It could be he is trying to begin to eat and take oral medications too. I'm sorry to sound like a neigh sayer, I have a feeling that I hope is wrong....to be continued...
John's blood continues to also gain strength. His platelets this morning are 81,000 (normal is 150-300) the highest they have been in a year. He is no longer transfusion dependent because these donor cells are engrafting like magic. The heart medication is working because John's blood pressure is back in the normal range and his heart rate is in the 60's again. He is taking the medication under protest since his throat and esophogus are still raw. Still not eating. He did lose almost 10 pounds of water over the last few days thanks to a much stronger diuretic. This has added to his heart and blood pressure operating better.
On the "it is always something" front. John has been having pretty awful tummy trouble. I am a bit concerned that it is the beginning of some graft vs host disease (from now on known as GVHD). Tummy trouble and pain is one of the most common types of GVHD. I hope I am wrong, it could be morphine withdrawal, but John has been on much higher doses for longer periods and has not had this type of reaction. It could be he is trying to begin to eat and take oral medications too. I'm sorry to sound like a neigh sayer, I have a feeling that I hope is wrong....to be continued...
