Saturday, November 15, 2003
Day +31 John is requesting bratwurst to eat, with ketchup. At least his appetite is returning. Along with that, his labs are still holding steady. We wrote Alicia (Dr. Wolf’s practice nurse at the cancer center) asking for reassurance that our brilliant Dr. Wolf would want John back, GVH and all. She wrote us that Dr. Wolf will want him back and she will help plan our escape. In the mean time Dr. Wolf is on his annual good will trek to Nepal helping set up good medical clinics. I tell you this so you will keep him in your good thoughts, one year because of the unrest in the region he had to be evacuated. We want him selfishly back in one piece for John’s triumphant back to Berkeley arrival in mid-January.
Dr. Stein came in last night to let John know that he has active CMV (cytomegalovirus). CMV is a common virus where 85% of adult population have the antibody for it. When John was first diagnosed two years ago, John was CMV -. Sometime during the last two years because of his compromised immune system he caught CMV, but we didn't know until final blood tests before transplant revealed John was CMV+. Usually this is not a big deal, but with active CMV it will leave John prone to several problems. He could come down with PCP pneumonia which is the same type of pneumonia AIDS patients are at risk for. He could also come down with shingles since CMV is a herpes type virus. All I know is it is another bump to John's full recovery. If I had written this update last night it would have been filled with hysterics, even a few tears. I was feeling so defeated, thinking what else could happen? Is John going to be here in the hospital like the young kid next door for 100 + days? I was really on a pity pot. The night nurse kept saying that having active CMV wasn't a big deal, but the treatment it twice daily IV medications for over 3 weeks. This to me translated to me John having to be an inpatient 3 weeks longer. Good thing I kept my head and didn’t have a full blown grand mal fit. Dr. Stein let us know this morning it would not delay John's discharge, they would do the medication IV, but can be done in the clinic. Soooo...John is still on target to leave this week if he continues to drink, eat and have no physical problems.
John is holding together as well as to be expected. He had a terrible nightmare this morning. Dr. Stein came in and woke him up to see how he was doing. John was pretty incoherent for a few minutes having trouble waking from the dream. He was dreaming he was a rookie firefighter. He was dreaming there was a big disaster, debris falling from the sky. He was searching for his best friend James when he sees him calling for help. He was trying to get to James, he could see him, but not get to him and he was trying to help other victims, calling to the veteran firefighters for assistance. The other firefighters wouldn't help him, he was on his own. He woke up quite upset. I think the meaning of John's dream is transparent, but I thought if he was able to finish the dream and not have had it interrupted he would of gotten the help or at least of gotten to James on his own. I know there are times in this disease and recovery that John must feel alone. Frankly it really is up to him if he drinks the right amount of fluids, or tries to eat. This part of recovery is in his hands. I can remind him until I am blue, but I cannot make him do it. On the other hand, I do point out to the nurses every bite he eats and have them write it down so Dr. Stein sees John is trying hard to get well enough to leave to the village. So I am not blowing my own horn here, but if Dr. Stein had not interrupted John's dream I am sure some old lady veteran firefighter would of turned up to show him the right ladder to use to save James while she pulled all the squirrels and cats from the falling buildings!
Dr. Stein came in last night to let John know that he has active CMV (cytomegalovirus). CMV is a common virus where 85% of adult population have the antibody for it. When John was first diagnosed two years ago, John was CMV -. Sometime during the last two years because of his compromised immune system he caught CMV, but we didn't know until final blood tests before transplant revealed John was CMV+. Usually this is not a big deal, but with active CMV it will leave John prone to several problems. He could come down with PCP pneumonia which is the same type of pneumonia AIDS patients are at risk for. He could also come down with shingles since CMV is a herpes type virus. All I know is it is another bump to John's full recovery. If I had written this update last night it would have been filled with hysterics, even a few tears. I was feeling so defeated, thinking what else could happen? Is John going to be here in the hospital like the young kid next door for 100 + days? I was really on a pity pot. The night nurse kept saying that having active CMV wasn't a big deal, but the treatment it twice daily IV medications for over 3 weeks. This to me translated to me John having to be an inpatient 3 weeks longer. Good thing I kept my head and didn’t have a full blown grand mal fit. Dr. Stein let us know this morning it would not delay John's discharge, they would do the medication IV, but can be done in the clinic. Soooo...John is still on target to leave this week if he continues to drink, eat and have no physical problems.
John is holding together as well as to be expected. He had a terrible nightmare this morning. Dr. Stein came in and woke him up to see how he was doing. John was pretty incoherent for a few minutes having trouble waking from the dream. He was dreaming he was a rookie firefighter. He was dreaming there was a big disaster, debris falling from the sky. He was searching for his best friend James when he sees him calling for help. He was trying to get to James, he could see him, but not get to him and he was trying to help other victims, calling to the veteran firefighters for assistance. The other firefighters wouldn't help him, he was on his own. He woke up quite upset. I think the meaning of John's dream is transparent, but I thought if he was able to finish the dream and not have had it interrupted he would of gotten the help or at least of gotten to James on his own. I know there are times in this disease and recovery that John must feel alone. Frankly it really is up to him if he drinks the right amount of fluids, or tries to eat. This part of recovery is in his hands. I can remind him until I am blue, but I cannot make him do it. On the other hand, I do point out to the nurses every bite he eats and have them write it down so Dr. Stein sees John is trying hard to get well enough to leave to the village. So I am not blowing my own horn here, but if Dr. Stein had not interrupted John's dream I am sure some old lady veteran firefighter would of turned up to show him the right ladder to use to save James while she pulled all the squirrels and cats from the falling buildings!
Friday, November 14, 2003
Day +30 Those of you who are parents do you actually remember the day your toddler stopped crying everyday? Or did it finally just dawn on you, 'Jeez I can't remember when was the last time so and so cried?' Last night as I was finally drifting off to sleep and I realized John has finally stopped spitting. Not suddenly this happened, it was gradual, but it must be several days now that he had not spit or suctioned. Not that John will give up his suction machine. No the disgusting thing is still taped to the side of his bed for security. The relief is great. I can put up with almost any bodily fluid...from almost anyone...but spitting is something I cannot stand. It makes me gag to have someone in front of me spitting on the sidewalk or when I am jogging on the track. Having two boys it was one of the most challenging parts to being a mother was to fight the boys need to copy other boys and spit. It just wasn't allowed. Perhaps John was just making up for all the years I made him swallow. Finally enough about spit, because that phase is over, John can finally swallow.
Today is Bone Marrow Biopsy day. Dr. Stein has a PA Lynn who also follows John. She will be doing the BMB. John was offered forget me not drugs, but has opted to tough it out with just some numb my butt drugs. We are going to take pictures at John's request. The reasoning is he has never witnessed a biopsy himself. "I just want to see for myself Mom." when I questioned him. Perhaps he knows deep down inside the days of BMB are going to come to an end. He will have one on about 80 days, 6 months after that and then once a year. We will not get the results of the BMB for several days, which means all of us will live our lives with a bit more anxiety until we get the all clear (which is what we expect, no reason or indication from is blood tests to think otherwise).
A wonderful friend Janet (hi Janet 'cause I know you read this) sent me a couple articles about GVH. The best thing about the articles besides helping us to not be afraid of the disease is it is giving me language to ask intelligent questions. GVH is graded from I - IV. I being the least severe and IV being the worst imaginable. John's episode of GVH was I. According to the article this means the possibility of it becoming chronic GVH is less if the grade is lower. It also stated that those in their 20's have less of a tendency to get acute GVH and if they do that it is less likely to become chronic. John's GVH is mostly a grade I GVH because they didn't sit around until he was beyond pain and began treatment right away (thank you Dr. Stein, my kind of doctor, not sitting around scratching his head).
John and I found out he must drink at lease 2 liters of fluid a day for several days before they will begin to give him his cyclosporin orally. He needs to be on the cyclosporin orally at least two days and not have a problem with it before they will release him. Our best calculations are if John can do this he will be out the earliest Thursday. And only if he drinks all the required liquid this weekend, and convince Dr. Stein to give him oral medications by Monday afternoon. This is if all else goes completely without fever, trots, vomiting or anymore severe belly pain. That is a lot to ask of John since he always eats and drinks better at home. The problem arises is that cyclosporin is a kidney destroyer and if John does not flush his kidneys thoroughly he could have kidney failure. Problem with drinking too many fluids is John is prone to fluid overload which dings his heart. If he gets fluid overload he has to take lasiks a powerful diuretic. You get the picture a lot is riding on John becoming an out patient. In the meantime because he is an inpatient he is more likely to be exposed to germs that will cause fever. As George Jetson says, "Jane get me off of this crazy thing!"
Today is Bone Marrow Biopsy day. Dr. Stein has a PA Lynn who also follows John. She will be doing the BMB. John was offered forget me not drugs, but has opted to tough it out with just some numb my butt drugs. We are going to take pictures at John's request. The reasoning is he has never witnessed a biopsy himself. "I just want to see for myself Mom." when I questioned him. Perhaps he knows deep down inside the days of BMB are going to come to an end. He will have one on about 80 days, 6 months after that and then once a year. We will not get the results of the BMB for several days, which means all of us will live our lives with a bit more anxiety until we get the all clear (which is what we expect, no reason or indication from is blood tests to think otherwise).
A wonderful friend Janet (hi Janet 'cause I know you read this) sent me a couple articles about GVH. The best thing about the articles besides helping us to not be afraid of the disease is it is giving me language to ask intelligent questions. GVH is graded from I - IV. I being the least severe and IV being the worst imaginable. John's episode of GVH was I. According to the article this means the possibility of it becoming chronic GVH is less if the grade is lower. It also stated that those in their 20's have less of a tendency to get acute GVH and if they do that it is less likely to become chronic. John's GVH is mostly a grade I GVH because they didn't sit around until he was beyond pain and began treatment right away (thank you Dr. Stein, my kind of doctor, not sitting around scratching his head).
John and I found out he must drink at lease 2 liters of fluid a day for several days before they will begin to give him his cyclosporin orally. He needs to be on the cyclosporin orally at least two days and not have a problem with it before they will release him. Our best calculations are if John can do this he will be out the earliest Thursday. And only if he drinks all the required liquid this weekend, and convince Dr. Stein to give him oral medications by Monday afternoon. This is if all else goes completely without fever, trots, vomiting or anymore severe belly pain. That is a lot to ask of John since he always eats and drinks better at home. The problem arises is that cyclosporin is a kidney destroyer and if John does not flush his kidneys thoroughly he could have kidney failure. Problem with drinking too many fluids is John is prone to fluid overload which dings his heart. If he gets fluid overload he has to take lasiks a powerful diuretic. You get the picture a lot is riding on John becoming an out patient. In the meantime because he is an inpatient he is more likely to be exposed to germs that will cause fever. As George Jetson says, "Jane get me off of this crazy thing!"
Thursday, November 13, 2003
Day + 29 Tomorrow John is scheduled for his first bone marrow biopsy (BMB) to see the percentage of engraftment. We will not know the results for a few days, but we ask all who continue to support us to say a little prayer to hope it shows remission and a new immune system. Of course there has to be a new immune system because of the GVHD that has reared up in John's gut. We asked Dr. Stein the difficult questions and it is mild because he is a brilliant doctor who didn't pull any punches. He began treatment immediately and kicked the GVH before it could do serious damage keeping it at a low grade. Will he have other episodes? The answer is probably yes, but they will stay on top of it. Most likely he will get occasional rashes. No guarantee if you get it one place it won't turn up in another. John will probably be off and on steroids for a year to control the GVH and keep it from getting out of hand. I am looking for information so that we can be informed about the possibilities without becoming hysterical. As long as the GVH keeps the leukemia away John can deal with a few rocks in the stomach. Dr. Stein also reassured us that he could have this episode and not ever have it again...Sounds good to me.
John says that eating feels like he is eating rocks. He also can taste the salt in everything. Currently most of his meals consist of sweet tasting things. Kudo bars wrapped in chocolate, Nutri-Grain cereal bars and Cinnamon Toast Crunch. The nurtritionist stopped by yesterday and lectured him about eating protein. I wonder if she would be in such a hurry to eat the food here. Yesterday John order grilled chicken breasts. They were these two pale slabs of dry jerky that Aunt Edna would of cooked. I also have been making Rice a Roni for him. John must be feeling desperate to eat if he is letting me cook him rice. Of course I have not told him the only available pot to cook rice in is an old carrot orange fondue pot in the village kitchen. I think considering one usually cannot mess up Rice a Roni, this small obstacle added with my cooking skills presents a culinary challenge. He didn't complain, and ate 1/4 of the dish. I guess I can give the left over to Pop, if it hasn't turned into a bright yellow Rice a Roni version of oatmeal.
Yesterday it hailed so hard in Watts they gave the kids a snow day as most of the cars were buried in a couple inches of hail this morning. They had over 5 inches of rain in less than 4 hours. Here in Durate it only rained during the hour I planned on running before it got dark. Plenty of lightning in the far distant and the leave blowers were working overtime to clear the leaves and blossoms that fell during the rain. Right now it is probably 75 degrees and crystal clear.
John says that eating feels like he is eating rocks. He also can taste the salt in everything. Currently most of his meals consist of sweet tasting things. Kudo bars wrapped in chocolate, Nutri-Grain cereal bars and Cinnamon Toast Crunch. The nurtritionist stopped by yesterday and lectured him about eating protein. I wonder if she would be in such a hurry to eat the food here. Yesterday John order grilled chicken breasts. They were these two pale slabs of dry jerky that Aunt Edna would of cooked. I also have been making Rice a Roni for him. John must be feeling desperate to eat if he is letting me cook him rice. Of course I have not told him the only available pot to cook rice in is an old carrot orange fondue pot in the village kitchen. I think considering one usually cannot mess up Rice a Roni, this small obstacle added with my cooking skills presents a culinary challenge. He didn't complain, and ate 1/4 of the dish. I guess I can give the left over to Pop, if it hasn't turned into a bright yellow Rice a Roni version of oatmeal.
Yesterday it hailed so hard in Watts they gave the kids a snow day as most of the cars were buried in a couple inches of hail this morning. They had over 5 inches of rain in less than 4 hours. Here in Durate it only rained during the hour I planned on running before it got dark. Plenty of lightning in the far distant and the leave blowers were working overtime to clear the leaves and blossoms that fell during the rain. Right now it is probably 75 degrees and crystal clear.
Wednesday, November 12, 2003
Day +28 part two The results are in. John is experiencing a mild case of GVHD in his gut. We kind of knew it deep down inside, but we were hoping John would escape this side effect of having a MUD (matched unrelated donor) BMT. I do not think it is because John had the mismatch transplant, the older woman I wrote about recently had a perfect match and she has GVH on her skin and in her gut. She is managing well and is going to go back to the Bay Area by Thanksgiving.
Dr. Stein told John he will be okay. We will talk to Dr. Stein tomorrow about how these results will effect John in the long term. Is the GVH mild and will always be mild or was the doctor on top of things and by treating him quickly for both the infection and GVH halting severe damage to John's intestines? Will this delay keep John from being able to take his medicines orally, therefore delaying him being discharged to the village? My mind it swimming with questions. I know most GVH can be treated with medications, and people can live productive lives, it is just scary.
Dr. Stein told John he will be okay. We will talk to Dr. Stein tomorrow about how these results will effect John in the long term. Is the GVH mild and will always be mild or was the doctor on top of things and by treating him quickly for both the infection and GVH halting severe damage to John's intestines? Will this delay keep John from being able to take his medicines orally, therefore delaying him being discharged to the village? My mind it swimming with questions. I know most GVH can be treated with medications, and people can live productive lives, it is just scary.
Day +28 This morning brings much of the same. We anxiously are waiting for the biopsy results and I will post as soon as we are given them. John's glucose is elevated because of the steroids, but should beginning coming down as they are lowering the dose each day. Finally since there is no evidence of the C-Diff infection Dr. Stein has decided to change the Flagyl, which was causing nausea/vomiting to another antibiotic that will be kinder to John's stomach.
John is finally beginning to eat small meals. Yesterday he ate two bowls of Cinnamon Toast Crunch (soggy in milk) and some macaroni and cheese. This morning when the food service people called he actually asked for and is eating as I write this Cream of Wheat. I know his appetite is returning, he is beginning to plan what he would like to cook on Thanksgiving for us and he is now willing to look at recipes again.
One day seem to melt into the rest here. Same squirrels, same trees, if I don't set the alarm on my phone for certain appointments (such as picking a person up at the airport) I would not know whether it is Wednesday or Sunday. I am sure John is feeling the same way. The dull white walls in this room are closing in on us. We are really looking forward to going to the movies. Going shopping for new long sleeve shirts, and much smaller pants since John is fairly thin these days. He is going to have to learn to remember to wear a hat outdoors and long sleeve shirts to protect his skin from the sun. Apparently he will be prone to serious skin cancer in the future with the particular chemo he was given. I guess this means the rest of his life he will continually be reminded of this illness. As long as the reminder doesn't become a nightmare I believe we can live with it.
John is finally beginning to eat small meals. Yesterday he ate two bowls of Cinnamon Toast Crunch (soggy in milk) and some macaroni and cheese. This morning when the food service people called he actually asked for and is eating as I write this Cream of Wheat. I know his appetite is returning, he is beginning to plan what he would like to cook on Thanksgiving for us and he is now willing to look at recipes again.
One day seem to melt into the rest here. Same squirrels, same trees, if I don't set the alarm on my phone for certain appointments (such as picking a person up at the airport) I would not know whether it is Wednesday or Sunday. I am sure John is feeling the same way. The dull white walls in this room are closing in on us. We are really looking forward to going to the movies. Going shopping for new long sleeve shirts, and much smaller pants since John is fairly thin these days. He is going to have to learn to remember to wear a hat outdoors and long sleeve shirts to protect his skin from the sun. Apparently he will be prone to serious skin cancer in the future with the particular chemo he was given. I guess this means the rest of his life he will continually be reminded of this illness. As long as the reminder doesn't become a nightmare I believe we can live with it.
Tuesday, November 11, 2003
Day +27 John has just returned from having the scope/biopsy. Dr. Stein was here to meet us upon return saying that everything looked really good. The results from the biopsy will take 24 hours, but on the surface even if this is the beginning of mild GVHD it has not done noticeable damage. This is great news for us. I have contacts of other people who have perfect matches and their doctors waited too long to check to see if it is GVHD and cause irreparable damage to the lining of their colon. At least this is not the case for John.
His labs looked great this morning. It is very hard not to fantasize him getting out soon again.
His labs looked great this morning. It is very hard not to fantasize him getting out soon again.
Monday, November 10, 2003
Day +26 This morning offers many pieces of good news. First John is officially off of contact isolation. No more yellow robes, gloves and red biohazard trash bags. Dr. Stein says the flagyl has controlled the C-Diff infection and John's tummy is much better. In fact his white count was down this morning indicating the infection is less. And if the higher white count is from GVHD it is under control too. The second piece of good news is they are lowering the dosage of steroids they are giving John which means the edge to John's general mood is much less. Third piece of good news is John ate and entire oatmeal and fruit bar, didn't boot it and about 7 bites of mashed potatoes. Last piece of good news is John did 8 rounds around the unit where he stopped and smoozed with all the nurses. John is turning on the charm these days, just in time for discharge and then they will really miss him when he leaves. It only took five weeks for them to warm up to each other.
Finally things have gotten friendlier here at City of Hope. Joan, the wife of Craig who is 13 days post transplant has been a God send for me. She is so friendly and warm. Has made these really sweet refridgerator magnets for everyone including some for John. The great thing about Joan's arrival on the unit is other people see us talking and they realize now that I am approachable too. So now I am talking to many of the other patients and caregivers on the unit. It really points out to me how really shy I am (I know impossible to believe, but I am really a fairly shy person outside of my comfort zone, and believe me being here is pretty far away from the zone).
Note to Bruce: Please let Jackie know that the pink flowers by the gate under the large tree were blown away by the leaf blowers by 8:00 this morning. She will understand. Another note for Jackie if you don't mind. This morning on the news there was a feature of the hottest new Hollywood hairdresser. Her secret for the perfect $100 and up haircut? "She re-books her clients two or three weeks later for a 15 minute touch up to make the hair cut is balanced. Not to heavy in some spots." Jackie, at Tresses for our $45.00 haircuts don't we call that a 15 minute 'redo'? Only in So Cal would a hair dresser be the hot haircutter of the minute with the secret to a "great" cut. If only we had the luxury of redoing all our clients two to three weeks after their appointment let alone whether our hard working non-celebrity clients have time to come back. And to tell the truth, the other secret to her "special" touch is to leave it messy and uneven...the brilliance is she has convince a whole load full of very rich people this is the look. What so you think...should we try it...any takers? It was great to see you this weekend, but today I already miss you guys so much.
Finally things have gotten friendlier here at City of Hope. Joan, the wife of Craig who is 13 days post transplant has been a God send for me. She is so friendly and warm. Has made these really sweet refridgerator magnets for everyone including some for John. The great thing about Joan's arrival on the unit is other people see us talking and they realize now that I am approachable too. So now I am talking to many of the other patients and caregivers on the unit. It really points out to me how really shy I am (I know impossible to believe, but I am really a fairly shy person outside of my comfort zone, and believe me being here is pretty far away from the zone).
Note to Bruce: Please let Jackie know that the pink flowers by the gate under the large tree were blown away by the leaf blowers by 8:00 this morning. She will understand. Another note for Jackie if you don't mind. This morning on the news there was a feature of the hottest new Hollywood hairdresser. Her secret for the perfect $100 and up haircut? "She re-books her clients two or three weeks later for a 15 minute touch up to make the hair cut is balanced. Not to heavy in some spots." Jackie, at Tresses for our $45.00 haircuts don't we call that a 15 minute 'redo'? Only in So Cal would a hair dresser be the hot haircutter of the minute with the secret to a "great" cut. If only we had the luxury of redoing all our clients two to three weeks after their appointment let alone whether our hard working non-celebrity clients have time to come back. And to tell the truth, the other secret to her "special" touch is to leave it messy and uneven...the brilliance is she has convince a whole load full of very rich people this is the look. What so you think...should we try it...any takers? It was great to see you this weekend, but today I already miss you guys so much.
Sunday, November 09, 2003
Day + 25 Today is Sunday at the City of Hope. Not much happens here on a Sunday. The cafeteria is closed, the leaf blowers are either enjoying NASCAR or football because the medical center pretty well closes down on the weekend. Doctors come in and tell you everything is okay.
The best part of the weekends for me is often my family or friends come to visit. This weekend John and I had Uncle Bob, Aud's husband, Jackie and her family. The best part about having Jackie here is she came bearing gifts, meat loaf, corn beef and fresh rye bread. She also brought me another supply of Peets. So to say the least I am well fed this weekend. I only wish I could share with John, but he will have to wait until he is out for such dietary pleasures. The best part of having Bob here this weekend is that he allowed me special time with Jackie. I was able to go out to dinner, a movie (Love Actually, which was a delight) and for a long run in a neighborhood I didn't know. Saying good bye to Jackie was difficult this morning. Mostly the way I have dealt with the home sickness is to try not to think of home. For instance I brought my scissors, have yet to offer a hair cut to anyone. I try not to concentrate on the cats or Bowman. That would put me over the edge. I am really trying not to concentrate on anything, but what is put in front of me. This morning when I got out of the shower I missed my robe. I thought I should ask Jen to bring it when she comes down to visit next. Then I thought better of it. I really don't want my household comforts, would make this place too much like home. I want something to help me keep the drive of getting John better and us back to Albany.
The best part of the weekends for me is often my family or friends come to visit. This weekend John and I had Uncle Bob, Aud's husband, Jackie and her family. The best part about having Jackie here is she came bearing gifts, meat loaf, corn beef and fresh rye bread. She also brought me another supply of Peets. So to say the least I am well fed this weekend. I only wish I could share with John, but he will have to wait until he is out for such dietary pleasures. The best part of having Bob here this weekend is that he allowed me special time with Jackie. I was able to go out to dinner, a movie (Love Actually, which was a delight) and for a long run in a neighborhood I didn't know. Saying good bye to Jackie was difficult this morning. Mostly the way I have dealt with the home sickness is to try not to think of home. For instance I brought my scissors, have yet to offer a hair cut to anyone. I try not to concentrate on the cats or Bowman. That would put me over the edge. I am really trying not to concentrate on anything, but what is put in front of me. This morning when I got out of the shower I missed my robe. I thought I should ask Jen to bring it when she comes down to visit next. Then I thought better of it. I really don't want my household comforts, would make this place too much like home. I want something to help me keep the drive of getting John better and us back to Albany.
