The chemo effects kicked in today and while there's no vommitting, there's plenty of nausea and general tiredness. An afternoon nap...ok, sleeping away most of the afternoon is a more appropriate description...helped a lot. Then wake up, eat a quick bite, and repeat.
Mom did have 3 walks in the hall that should help keep her strong and ready for...TRANSPLANT DAY (which is today, 6.29).
She wanted to make sure all the readers got this quick update, but definitely be thinking about her and Walt today. The transplant should happen this afternoon sometime, perhaps around 3. As we've all learned, these things are subject to change a few hours - usually later!
Monday, June 29, 2009
Saturday, June 27, 2009
Checking into the hospital
I’m in the hospital. I’m comfortable and relaxed. Sharlyne picked me up at the clinic today and brought me here along with snacks and a new pair of reading glasses. She is always prepared for everything, but not necessarily for anything. I invited her on a float trip with two other women one time and she suggested I might not know her very well.
Today was a completely different way of arriving at the hospital for me. I have a bag with pajamas and clean underwear, a book to read. I have some toiletries, my own kleenex (hospital kleenex should be donated to boy scouts for fire starting) and some extra crossword puzzles. Usually I am being ferried to the hospital by someone and one or the other of us is calling for clean underwear, the phone charger, shampoo and other stuff. I feel slightly more in control here. And I aim to fly under the radar and be low maintenance.
Things went smoothly at the clinic this morning and I got a few hugs for good luck from the nurses when I left. All the chemo has been dripped into me. So I am rinsing furiously with salt water and pushing the anti-nausea button if I so much as belch. No vomiting or mouth sores.
My computer has been acting strangely and I discovered a virus on it! I can’t imagine how that happened. I feel like my customer. I did have an experience like a customer this week. Often when someone calls me about a computer and I sit down with it to fix the problem, everything works fine. I call it the “Cathi Karma.” This week when I had the anti-nausea pump slung around my hips, I could not get it to work one morning. And when the nurse at the clinic tried, it worked fine. “Clinic Karma” I reckon.
I have an IV drip of the immune suppressant drug Prograf (or Tacrolimus.) The dose I’m getting for this transplant is higher than I received for the last transplant. And it’s being handled differently too. Tomorrow is a “rest day” meaning no chemo, then Monday the transplant. The actual transplant is really like a transfusion. It’s just a bag of special cells. Walt is having the most trouble since he is taking the Neupogen shots. He’s kind of squirelly. Besides a headache, he can’t focus for long, and he’s just bouncing off the walls.
On Monday he will be hooked up to the apheresis machine that will pump his blood out, run it through a centrifuge to extract the stem cells, then put the leftovers back in his other arm. They expect it to take 4 hours to get 500 cc’s or stem cells for me.
Being in the hospital is a good place for me right now. The focus is squarely on my recovery. I cannot do anything about what’s going on in the rest of my world so there’s no point in fretting about it. A physical shift is a good tool to get my head square.
Cathi
Today was a completely different way of arriving at the hospital for me. I have a bag with pajamas and clean underwear, a book to read. I have some toiletries, my own kleenex (hospital kleenex should be donated to boy scouts for fire starting) and some extra crossword puzzles. Usually I am being ferried to the hospital by someone and one or the other of us is calling for clean underwear, the phone charger, shampoo and other stuff. I feel slightly more in control here. And I aim to fly under the radar and be low maintenance.
Things went smoothly at the clinic this morning and I got a few hugs for good luck from the nurses when I left. All the chemo has been dripped into me. So I am rinsing furiously with salt water and pushing the anti-nausea button if I so much as belch. No vomiting or mouth sores.
My computer has been acting strangely and I discovered a virus on it! I can’t imagine how that happened. I feel like my customer. I did have an experience like a customer this week. Often when someone calls me about a computer and I sit down with it to fix the problem, everything works fine. I call it the “Cathi Karma.” This week when I had the anti-nausea pump slung around my hips, I could not get it to work one morning. And when the nurse at the clinic tried, it worked fine. “Clinic Karma” I reckon.
I have an IV drip of the immune suppressant drug Prograf (or Tacrolimus.) The dose I’m getting for this transplant is higher than I received for the last transplant. And it’s being handled differently too. Tomorrow is a “rest day” meaning no chemo, then Monday the transplant. The actual transplant is really like a transfusion. It’s just a bag of special cells. Walt is having the most trouble since he is taking the Neupogen shots. He’s kind of squirelly. Besides a headache, he can’t focus for long, and he’s just bouncing off the walls.
On Monday he will be hooked up to the apheresis machine that will pump his blood out, run it through a centrifuge to extract the stem cells, then put the leftovers back in his other arm. They expect it to take 4 hours to get 500 cc’s or stem cells for me.
Being in the hospital is a good place for me right now. The focus is squarely on my recovery. I cannot do anything about what’s going on in the rest of my world so there’s no point in fretting about it. A physical shift is a good tool to get my head square.
Cathi
Thursday, June 25, 2009
Hats are good
I arrived at the clinic this morning and took a seat in the little waiting area. Amy looked around and asked "4 or 5?" speaking of the treatment rooms. Then she stopped and said "How do you feel today?" my answer was "pissed off." She said well, okay and I went to room 5.
I told her I needed a hat today. Nurses at the clinic often wear hats. Amy wears them when she doesn't really want to be there (several days a week.) I chose the sunflower, then borrowed Anthony's sunglasses (Anthony is a really good aid in my area.) Herewith, the result. I am now in the market for a Groucho Marx type face that is covered with seeds. The sunglasses were just not brown enough.
It did improve my disposition, and a lot of friendly nurses stopped to comment. Things are just tense in my life right now. I'm not so good at dipping and swaying to miss the obstacles; I just want everything to go perfectly (perfectly being MY WAY.)
Dr. Aljitawi paid a visit. I love Dr. Aljitawi. He is a negotiator. I felt almost like I was in a lawsuit settlement conference.
Dr. A - I was not in the meetings about your transplant.
me - right...you were in Jordan on holiday
A - So I went over the notes
me - imagine a prompting nod
A - and I have an idea (he sounds very upbeat but obviously not quite sure about my reaction)
me - still nodding
A - You've had the Fludarabine before
....
A - but the Melphalan is new.
...
A - and I would like to see you more during the Melphalan
...
A - and perhaps have you in the hospital for it...
me - YES!
Actually I wasn't that enthusiastic because he had clearly prepared his case so carefully I hated to distract him. He was also carefully watching my mom's reactions as she listened in to the conversation.
So I will likely go in the hospital Fri or Sat and stay through the transplant and for a couple of days after that. I am okay with this. Yesterday, I lined up sitters to stay with me so that M&D can get away to the lake for the weekend. So I know I will have company at the hospital. the only thing that worries me is aerobic exercise. The bicycle on the BMT unit apparently suffered a fatal cardiac arrest (isn't that awful about 50 yr old Michael Jackson dying?) some weeks ago.
I play with my little air toy several times a day. I have to suck through a tube to raise a disk up to 2500 while at the same time, NOT letting the little yellow thing move out of the "best" section. I'll have to post a photo. This helps my lungs, but isn't really aerobic exercise.
Let's see the other news is that I will lose my hair and get mouth sores from this Melphalan stuff. I was contemplating getting a hair cut, but I reckon that won't be necessary now. I have also vowed to minimize the mouth sores as much as possible and have been rinsing frequently with salt water.
I just need to get my hospital clothes clean and the Wii packed up to go.
This evening Walt is keeping me company and filling in the gaps in my American history. I know a lot but barely enough to fit on Walt's little finger compared to what he knows. He started the Neupogen shots today. The person he met with said they will try to get 500 cc of cells from him. And they will put them all in me. That's another difference in this transplant.
Differences...
1. no radiation
2. 2x stronger Fludarabine
3. new chemo Melphalan
4. LOTS OF STEM CELLS (last transplant was 350 cc or so)
5. anti-rejection chemo afterwards.
6. shorter time span for immune suppressant drug.
7. longer recovery time....6 months instead of 100 days.
All to incite a fight between my cells and my brother's cells.
So "beat em up, beat em up, smash Ca-thi!"
Wednesday, June 24, 2009
D - 5
Chemo day 2. Uneventful. Was at the clinic 3 1/2 hours. Getting blood, Caspo (anti-fungal), chemo and anti-nausea stuff before it all started.
I have a little fanny pack, that is heavy and annoying, with anti-nausea juice in it. It helps with the nausea. It also helps relax me as it is a mix of Benedryl and Ativan. So far I've just taken a couple of squirts in the late afternoon. The remainder of the day I wrestle the thing around. Over my shoulder, around my waist. It has to be moved out of the way to fasten a seatbelt.
I could describe going to the bathroom with it around my waist but I'm not feeling that long winded. Suffice to say there is a dangling strap; there is my shirt tail over my britches; access to my britches seems to be above the girdling strap..... and you get the picture.
I did walk on the treadmill this afternoon. 25 minutes with Dick Francis.
Tomorrow back to the clinic.
I have babysitters for this weekend so M&D can get away.
I'm cranky. I have things I need that I'm not getting. I'm nervous. I'm not completely physically comfortable. I have trouble relaxing.
One of my fellow travelers said she was taking omega fish oil and she thought it helped her liver and skin. Good call, Barry. I will stock up and the minute they say I can take vitamins again, I'll be swallowing them.
Cathi
I have a little fanny pack, that is heavy and annoying, with anti-nausea juice in it. It helps with the nausea. It also helps relax me as it is a mix of Benedryl and Ativan. So far I've just taken a couple of squirts in the late afternoon. The remainder of the day I wrestle the thing around. Over my shoulder, around my waist. It has to be moved out of the way to fasten a seatbelt.
I could describe going to the bathroom with it around my waist but I'm not feeling that long winded. Suffice to say there is a dangling strap; there is my shirt tail over my britches; access to my britches seems to be above the girdling strap..... and you get the picture.
I did walk on the treadmill this afternoon. 25 minutes with Dick Francis.
Tomorrow back to the clinic.
I have babysitters for this weekend so M&D can get away.
I'm cranky. I have things I need that I'm not getting. I'm nervous. I'm not completely physically comfortable. I have trouble relaxing.
One of my fellow travelers said she was taking omega fish oil and she thought it helped her liver and skin. Good call, Barry. I will stock up and the minute they say I can take vitamins again, I'll be swallowing them.
Cathi
Tuesday, June 23, 2009
The longest day at the clinic
I'm writing this message at the clinic. It's 2:15 and I've been sitting in this chair since 8am this morning. The total juice that I'm getting today via IV takes about 2 hours. And I still have half an hour to go on the last juice bag. My bum aches. and my disposition is edgy. I've sat here a very long time with nothing hooked up.
Last Friday I received a big ole notebook with tons of stuff in it. Detailed information about the transplant and how to proceed. I didn't get a notebook last time, just a couple pages of protocol. So I copied the protocol pages out of the notebook and carried them with me to the clinic.
But I guess writing everything down in a notebook does not mean the decisions have been made or that the system has been laid out. First thing this morning Amy came in with a bag of equipment to measure intake and output. Then she left with the bag and I haven't seen it since. She wanted me to bring the notebook. She's going to give me papers to chart all the stuff. Temperatures, fluid intake, etc.
Right now I don't even have any more appointments. Which I have told several people who should be able to do something about it. I've seen the nurse practitioner, the pharmacist twice, most every nurse and tech in the joint. And everyone has a different story. and the final story is different from what Dr. Ganguly told me last week; and from what is in the notebook.
are you confused? Imagine me sitting in this chair with a sore butt! They promise it won't be this way again...that the first day is always a scramble. I'm ready to promise to not come back. Counter productive I know: remember I'm edgy.
Mom is with me today. She has the most difficulty waiting around like this of any of my companions. Neither of us were prepared for the indecisive mood at the clinic today.
It's not different. It's just the way it is. I'm not worried about my care. Everyone is understanding and apologetic but I am edgy with TB. There is not enough chocolate to soothe this uneasy patient.
Let's see the upside. I weighed 154. Have gained 7# over the last 2 weeks. I met in person a fellow BMT traveler with whom I have corresponded since last summer when I got sick. Dr. Aljitawi stopped by to tell me I look great. My liver counts are so close to normal I wonder if we could fudge and call them normal. I have the prescriptions that I need. And it's steaming hot outside while I am inside, and fairly cool--wearing a light jacket.
And here we go again. Amy just came in and asked if I had my scrips. Yes I said, for prograf. She asked "do you have the Cellcept" I tell her no I'm not taking Cellcept. she goes to check.... sigh.
Last Friday I received a big ole notebook with tons of stuff in it. Detailed information about the transplant and how to proceed. I didn't get a notebook last time, just a couple pages of protocol. So I copied the protocol pages out of the notebook and carried them with me to the clinic.
But I guess writing everything down in a notebook does not mean the decisions have been made or that the system has been laid out. First thing this morning Amy came in with a bag of equipment to measure intake and output. Then she left with the bag and I haven't seen it since. She wanted me to bring the notebook. She's going to give me papers to chart all the stuff. Temperatures, fluid intake, etc.
Right now I don't even have any more appointments. Which I have told several people who should be able to do something about it. I've seen the nurse practitioner, the pharmacist twice, most every nurse and tech in the joint. And everyone has a different story. and the final story is different from what Dr. Ganguly told me last week; and from what is in the notebook.
are you confused? Imagine me sitting in this chair with a sore butt! They promise it won't be this way again...that the first day is always a scramble. I'm ready to promise to not come back. Counter productive I know: remember I'm edgy.
Mom is with me today. She has the most difficulty waiting around like this of any of my companions. Neither of us were prepared for the indecisive mood at the clinic today.
It's not different. It's just the way it is. I'm not worried about my care. Everyone is understanding and apologetic but I am edgy with TB. There is not enough chocolate to soothe this uneasy patient.
Let's see the upside. I weighed 154. Have gained 7# over the last 2 weeks. I met in person a fellow BMT traveler with whom I have corresponded since last summer when I got sick. Dr. Aljitawi stopped by to tell me I look great. My liver counts are so close to normal I wonder if we could fudge and call them normal. I have the prescriptions that I need. And it's steaming hot outside while I am inside, and fairly cool--wearing a light jacket.
And here we go again. Amy just came in and asked if I had my scrips. Yes I said, for prograf. She asked "do you have the Cellcept" I tell her no I'm not taking Cellcept. she goes to check.... sigh.
Sunday, June 21, 2009
The longest day of the year
Happy Fathers Day everyone.
I gave my father a card that you can record a message on, but the card was damaged so he was greeted by "to record a message, press and hold the button...." He laughed about that, as well as the note that the gift is in the mail.
M&D went out to brunch with Walt and family while I went to the clinic and then my house to read the paper. Mark was here this weekend, staying at my house and we had a good visit. Lots of hugs to get my tank filled.
I start chemo on Tuesday, June 23rd. I have tied up a few loose ends; enough I hope to be able to relax into the treatment plan. I will have chemo Tuesday through Saturday. Sunday is a rest day. The transplant is on Monday. Walt will start taking neupogen shots on Thursday to be ready to donate Monday.
The protocol calls for the antibiotic to continue through the transplant. Other drugs come and go according to the day. It's all laid out on two pieces of paper starting with "day - 6" and going through "d + 40...." And it all happens at the clinic. I will not be in the hospital at all.
I'm aiming to put one foot in front of the other and proceed, same as I've always done. Do what they tell me to do and come out successful.
Hopefully my sense of humor will return once I start treatment. And my sense of calm. And these blog posts will be slightly less dry!
Cathi
I gave my father a card that you can record a message on, but the card was damaged so he was greeted by "to record a message, press and hold the button...." He laughed about that, as well as the note that the gift is in the mail.
M&D went out to brunch with Walt and family while I went to the clinic and then my house to read the paper. Mark was here this weekend, staying at my house and we had a good visit. Lots of hugs to get my tank filled.
I start chemo on Tuesday, June 23rd. I have tied up a few loose ends; enough I hope to be able to relax into the treatment plan. I will have chemo Tuesday through Saturday. Sunday is a rest day. The transplant is on Monday. Walt will start taking neupogen shots on Thursday to be ready to donate Monday.
The protocol calls for the antibiotic to continue through the transplant. Other drugs come and go according to the day. It's all laid out on two pieces of paper starting with "day - 6" and going through "d + 40...." And it all happens at the clinic. I will not be in the hospital at all.
I'm aiming to put one foot in front of the other and proceed, same as I've always done. Do what they tell me to do and come out successful.
Hopefully my sense of humor will return once I start treatment. And my sense of calm. And these blog posts will be slightly less dry!
Cathi
Thursday, June 18, 2009
T-Day: June 29, 2009
Today I signed the papers.
Dr. Ganguly called me a fighter. "I have seen Cathi fight since she first came in the hospital last year."
A second Reduced Intensity Transplant.
Walt will be the donor but more cells than last time.
Chemo prep will be twice as intense.
Recovery will be 6 months not 100 days.
Protocol will be changed to encourage Walt's cells to kill mine and take over.
Daily clinic visits for months.
I will get the final protocol tomorrow.
Liver counts are still dropping quickly.
I am scared and excited. and tired. I want it all to start right away.
But I am tired, and I did persuade Dr. Ganguly to let me take ambien again. My sleep has been short-circuited lately. So I'm going to take the ambien and crash.
Cathi
Dr. Ganguly called me a fighter. "I have seen Cathi fight since she first came in the hospital last year."
A second Reduced Intensity Transplant.
Walt will be the donor but more cells than last time.
Chemo prep will be twice as intense.
Recovery will be 6 months not 100 days.
Protocol will be changed to encourage Walt's cells to kill mine and take over.
Daily clinic visits for months.
I will get the final protocol tomorrow.
Liver counts are still dropping quickly.
I am scared and excited. and tired. I want it all to start right away.
But I am tired, and I did persuade Dr. Ganguly to let me take ambien again. My sleep has been short-circuited lately. So I'm going to take the ambien and crash.
Cathi
Monday, June 15, 2009
Strategizing
I've had some great suggestions since Friday's post about strategizing. Airborne protein, fish oil, and bunting.
I particularly like the bunting idea. Here is the quote from Debbie's email.
"I know you want to hit a grand slam but remember, a bunt is still effective to get you on base and eventually score a run. Last night, Brian's team faced a really tough team and they soon learned that trying to hit out of the park was usually just caught. They changed their strategy and began just trying to hit grounders in open spots and even resorted to bunts but they ended up winning both games rather easily. "
My spirits have been pretty good as long as I'm not too tired. I've had some trouble sleeping with all the medication changes. On those days I remind myself I'm tired, and this will look better when I'm rested.
I've recalled the times early this year when I was in the hospital and everyone was getting discouraged. The doctors kept talking and suddenly one day came up with a crazy idea. They checked with their colleagues at other transplant centers, gave it a try, and presto, here I am. It wasn't a grand slam home run, but it boosted my white cells enough to hammer the pneumonia. I know of other cases where their creativity has paid off. So I figure I will leave it up to the coaches and just continue to play my position.
I may download "Take me out to the ball game" to the iPod.
Cathi
I particularly like the bunting idea. Here is the quote from Debbie's email.
"I know you want to hit a grand slam but remember, a bunt is still effective to get you on base and eventually score a run. Last night, Brian's team faced a really tough team and they soon learned that trying to hit out of the park was usually just caught. They changed their strategy and began just trying to hit grounders in open spots and even resorted to bunts but they ended up winning both games rather easily. "
My spirits have been pretty good as long as I'm not too tired. I've had some trouble sleeping with all the medication changes. On those days I remind myself I'm tired, and this will look better when I'm rested.
I've recalled the times early this year when I was in the hospital and everyone was getting discouraged. The doctors kept talking and suddenly one day came up with a crazy idea. They checked with their colleagues at other transplant centers, gave it a try, and presto, here I am. It wasn't a grand slam home run, but it boosted my white cells enough to hammer the pneumonia. I know of other cases where their creativity has paid off. So I figure I will leave it up to the coaches and just continue to play my position.
I may download "Take me out to the ball game" to the iPod.
Cathi
Saturday, June 13, 2009
Not what I expected to hear
Yesterday Walt and I went to the clinic for the "Consent Meeting." This is a meeting with the patient, doctor, transplant coordinator, and [usually] family member where we get the lowdown on the transplant procedure. We hear the risks in frightening detail. We get info about the protocol the team has chosen for the transplant, the dates. We sign and move forward, usually in a few days.
Yesterday's meeting started with Dr. Ganguly saying "This is not a consent meeting." Immediately I knew the transplant was delayed again. They want another clear bone marrow biopsy before proceeding and they want the liver counts to drop closer to the normal range. It was VERY unexpected given the meeting with Dr. Abhyankar on Tuesday and various remarks through the week.
Extremely disappointing.
Dr. Ganguly speaks in absolutes. "This may kill you. But if we don't do it you will die for sure so it's worth it to do this procedure." There is no sugar coating, no soothing, and not much talk about what is positive. It was difficult to sit through without crying. Actually it was difficult to sit through without screaming "What happened between Tuesday and today?"
Apparently what happened is the liver counts skyrocketed last week. They do seem to be coming back down nicely but that is not resolving the knot in my gut.
The team was also stunned by how good the pulmonary function test was. Beth, the transplant coordinator, showed me the results and all were over "100% of expected" ranging from about 116% to 156%. These results also added to the uncertainty of how to proceed.
The discussion yesterday was that I might have either another Reduced Intensity Transplant or a fully ablative transplant. The chemo preparation for an RIT would be twice as tough as the first one last September and the protocol different to give the donor cells more opportunity to kill the recipient cells and take over. The fully ablative transplant is on the table because my lungs are in much better shape than anyone expected. (I keep telling them I was a competitive swimmer.) Both types will use Walt as a donor again.
It will be a long week while I get a bone marrow biopsy on Tuesday and learn the results on Thursday. I've been working feverishly to get ready to be in the hospital for several weeks and my momentum detoured on a side rail yesterday. I have daily clinic visits to get the antibiotic but they will only draw blood every other day. So on alternate days I have a 30 minute visit. This is good, but I confess to missing the social interaction of the clinic. I did not realize how important it was to me.
I have a lot of movies to lose myself in. Am in the middle of a very good book. Still haven't walked on the treadmill enough to listen to all my old CDs. Shoot, I haven't even finished sewing the border on that big quilt I made in 1986 or so.
My house is ready for me to live there but I do not expect to move there with the time to transplant so short. I have been going up there for small tasks and it does feel good to hang out in the house.
So another curve ball in the penultimate inning. Hopefully the pitcher will send me a fast ball that I can hit out of the park next time I'm up.
Cathi
Yesterday's meeting started with Dr. Ganguly saying "This is not a consent meeting." Immediately I knew the transplant was delayed again. They want another clear bone marrow biopsy before proceeding and they want the liver counts to drop closer to the normal range. It was VERY unexpected given the meeting with Dr. Abhyankar on Tuesday and various remarks through the week.
Extremely disappointing.
Dr. Ganguly speaks in absolutes. "This may kill you. But if we don't do it you will die for sure so it's worth it to do this procedure." There is no sugar coating, no soothing, and not much talk about what is positive. It was difficult to sit through without crying. Actually it was difficult to sit through without screaming "What happened between Tuesday and today?"
Apparently what happened is the liver counts skyrocketed last week. They do seem to be coming back down nicely but that is not resolving the knot in my gut.
The team was also stunned by how good the pulmonary function test was. Beth, the transplant coordinator, showed me the results and all were over "100% of expected" ranging from about 116% to 156%. These results also added to the uncertainty of how to proceed.
The discussion yesterday was that I might have either another Reduced Intensity Transplant or a fully ablative transplant. The chemo preparation for an RIT would be twice as tough as the first one last September and the protocol different to give the donor cells more opportunity to kill the recipient cells and take over. The fully ablative transplant is on the table because my lungs are in much better shape than anyone expected. (I keep telling them I was a competitive swimmer.) Both types will use Walt as a donor again.
It will be a long week while I get a bone marrow biopsy on Tuesday and learn the results on Thursday. I've been working feverishly to get ready to be in the hospital for several weeks and my momentum detoured on a side rail yesterday. I have daily clinic visits to get the antibiotic but they will only draw blood every other day. So on alternate days I have a 30 minute visit. This is good, but I confess to missing the social interaction of the clinic. I did not realize how important it was to me.
I have a lot of movies to lose myself in. Am in the middle of a very good book. Still haven't walked on the treadmill enough to listen to all my old CDs. Shoot, I haven't even finished sewing the border on that big quilt I made in 1986 or so.
My house is ready for me to live there but I do not expect to move there with the time to transplant so short. I have been going up there for small tasks and it does feel good to hang out in the house.
So another curve ball in the penultimate inning. Hopefully the pitcher will send me a fast ball that I can hit out of the park next time I'm up.
Cathi
Tuesday, June 9, 2009
Preparing for Transplant
It turns out the recorded message to meet with the nutritionist today was only the beginning. Monday morning I got a phone call with a list of appointments to keep to get ready for transplant. X-rays and scans and a "Pulmonary Function Test" which wore me out today.
I'm really going to transplant in the next couple of weeks. I will learn dates and the final protocol this Friday. They are still deciding the chemo protocol. Walt will be my donor again and they will harvest his stem cells again after beefing him up with Neupogen shots.
I have to ramp up the eating. 90g of protein and 2100 cals a day. Minimum. Keep up the treadmill. Visit the clinic every day for Ertepenem, the antibiotic. No anti-fungal drugs right now.
The doctor talked to me today about the procedure. He said this will be higher risk than the last one. What they really would like to do is another mini transplant but they know that didn't work, so they're going to do the full banana. They have to give me anti-fungal drugs to protect the lungs, but they have to walk a fine line so that my liver is not damaged.
Higher risk of mortality he says. I know this. I said to him "You guys have done a lot of these transplants and I trust your expertise."
Then I said "and I am a tough nut." He smiled and said "we know THAT." I think that's a good positive.
Meanwhile I seem to have a little stomach bug, perhaps from Harrison on the weekend. No fever=no worry. Just feel lousy. I think it's a bug because vomiting was just losing my cookies. It was not the gut wrenching convulsions that chemo and other drugs seem to produce. Nevertheless, I am not eating much and hope to feel much better tomorrow.
When I have dates, you'll have dates. Meanwhile let's keep the positive thoughts and prayers coming for this medical team, my support team, and my body.
Cathi
I'm really going to transplant in the next couple of weeks. I will learn dates and the final protocol this Friday. They are still deciding the chemo protocol. Walt will be my donor again and they will harvest his stem cells again after beefing him up with Neupogen shots.
I have to ramp up the eating. 90g of protein and 2100 cals a day. Minimum. Keep up the treadmill. Visit the clinic every day for Ertepenem, the antibiotic. No anti-fungal drugs right now.
The doctor talked to me today about the procedure. He said this will be higher risk than the last one. What they really would like to do is another mini transplant but they know that didn't work, so they're going to do the full banana. They have to give me anti-fungal drugs to protect the lungs, but they have to walk a fine line so that my liver is not damaged.
Higher risk of mortality he says. I know this. I said to him "You guys have done a lot of these transplants and I trust your expertise."
Then I said "and I am a tough nut." He smiled and said "we know THAT." I think that's a good positive.
Meanwhile I seem to have a little stomach bug, perhaps from Harrison on the weekend. No fever=no worry. Just feel lousy. I think it's a bug because vomiting was just losing my cookies. It was not the gut wrenching convulsions that chemo and other drugs seem to produce. Nevertheless, I am not eating much and hope to feel much better tomorrow.
When I have dates, you'll have dates. Meanwhile let's keep the positive thoughts and prayers coming for this medical team, my support team, and my body.
Cathi
Sunday, June 7, 2009
HB and me
Big weekend here in OP. Conor and Annie and Harrison arrived for a visit. Many thanks to Sally for collecting them from the airport Friday night. I went over to my house to have a visit on my way to the clinic Saturday morning. We all played in the big king size bed and then Harrison (HB) dozed off for a few minutes. Here is the photo of the weekend.
Unfortunately, the only photo because little HB ran a fever while I was at the clinic Saturday morning and had an upset tummy and so off limits to me. Do you remember that line in "My Fair Lady" where Professor Higgins storms around his study saying "Damn, Damn, Damn, Damn." "Damn, Damn, Damn, Damn." That's how I feel.
So Conor stayed home with him and Annie went to the wedding with friends and I stayed away. Peggy joined me at M&D's for dinner and a movie.
On the upside, the clinic visit was about 30 min long this morning, just the antibiotic. The liver counts were down just a little bit yesterday and will be checked again tomorrow. So far I haven't had any more blood transfusions since they lowered the threshold for giving me blood, just a couple units of platelets.
I am losing weight and I feel like every day is a battle to consume enough calories and protein to not lose. Protein bars, protein shakes, high protein cereal, beans, and lotsa chocolate! I received a recorded message yesterday that I have an appointment with the nutritionist at the clinic on Tuesday. I hope I can at least stop the loss by then. No telling what she will come up with for me to eat!
Unfortunately, the only photo because little HB ran a fever while I was at the clinic Saturday morning and had an upset tummy and so off limits to me. Do you remember that line in "My Fair Lady" where Professor Higgins storms around his study saying "Damn, Damn, Damn, Damn." "Damn, Damn, Damn, Damn." That's how I feel.
So Conor stayed home with him and Annie went to the wedding with friends and I stayed away. Peggy joined me at M&D's for dinner and a movie.
On the upside, the clinic visit was about 30 min long this morning, just the antibiotic. The liver counts were down just a little bit yesterday and will be checked again tomorrow. So far I haven't had any more blood transfusions since they lowered the threshold for giving me blood, just a couple units of platelets.
I am losing weight and I feel like every day is a battle to consume enough calories and protein to not lose. Protein bars, protein shakes, high protein cereal, beans, and lotsa chocolate! I received a recorded message yesterday that I have an appointment with the nutritionist at the clinic on Tuesday. I hope I can at least stop the loss by then. No telling what she will come up with for me to eat!
Thursday, June 4, 2009
More non-news
Every day the regimen changes. Today Dr. Ganguly took away the one small pill I was taking so now it's a handful of very big pills twice a day.
My liver enzyme counts are extremely high which is the reason for all these changes. I am taking no anti-fungal right now. My lungs are healthy and I am being careful so hopefully this will be okay. The anti-fungal drugs (for the pneumonia) beat up the liver in an unending chain of events. So we're looking for the weak link.
The liver takes a beating from the radiation that prepares for the transplant, so you want it healthy going in. Last week in the hospital one of the numbers fell into the normal range (less than 70)-- today it is 400+ I've no idea why. And you know I have asked the question!
The IV antiobiotic has been changed and the orders are to take it every day until transplant. That means: visit the clinic every day. That's my job. They dropped the threshold for giving me blood. Usually I get blood if my hemoglobin is under 7. Now they will let it drop lower. This is okay because I am fortunate enough to not have any scary symptoms until it practically disappears. And because repeated transfusions are causing some of the liver distress.
Yesterday when I arrived at the clinic the nurse told me all these changes and I felt a little frustrated because I didn't know about them. I made her a list of questions on a paper towel and she went round and got answers for me. Fortunately we both were laughing about it.
Then there is the matter of the chelator drug. The latest story is that you can only get it by mail from one of three authorized vendors. Apparently it is new enough that the drug company is keeping close tabs on patients who take it. I still do not have it in my hands, but I'm thinking it's going to cost closer to the doctor's estimate of $2000/month instead of the social worker's $500/month. I was recording drug costs today and in the first half of this year I have spent one-fifth what I spent in the last 4 months of 2008. It all becomes relative I guess.
Finally the concoction labeled "Magic Mouth" (lidocain/mylanta/benedryl) to prevent the mouth sores from returning in the absence of an anti-fungal drug. Mouth sores are nasty things and I hope I never get another one. I had them very bad last week after no anti-fungal medicine over Memorial Day weekend.
So, still no news of a transplant schedule. Still lots of talk about it. Still some pain in the eye, but better every day. (The eye is really non-news--inconsequential even.)
Meanwhile, Conor and Annie are coming for a visit tomorrow with Harrison and I can't wait to squeeze that little guy. Sisters Janice and Lori, and sis-in-law Suzanne have worked at my house this week getting it ready for Cathi to live there. They moved my office upstairs, cleaned everything and pronounced it "SANITIZED."
I will spend the night at my own house Saturday night and see how I feel. Frankly I am very nervous. Partly because the last time I spent the night I woke up sick and spent 32 days in the hospital; and partly because M&D's house has become sort of a haven for me. I realize how fragile this feeling good is and I want to keep it around.
My liver enzyme counts are extremely high which is the reason for all these changes. I am taking no anti-fungal right now. My lungs are healthy and I am being careful so hopefully this will be okay. The anti-fungal drugs (for the pneumonia) beat up the liver in an unending chain of events. So we're looking for the weak link.
The liver takes a beating from the radiation that prepares for the transplant, so you want it healthy going in. Last week in the hospital one of the numbers fell into the normal range (less than 70)-- today it is 400+ I've no idea why. And you know I have asked the question!
The IV antiobiotic has been changed and the orders are to take it every day until transplant. That means: visit the clinic every day. That's my job. They dropped the threshold for giving me blood. Usually I get blood if my hemoglobin is under 7. Now they will let it drop lower. This is okay because I am fortunate enough to not have any scary symptoms until it practically disappears. And because repeated transfusions are causing some of the liver distress.
Yesterday when I arrived at the clinic the nurse told me all these changes and I felt a little frustrated because I didn't know about them. I made her a list of questions on a paper towel and she went round and got answers for me. Fortunately we both were laughing about it.
Then there is the matter of the chelator drug. The latest story is that you can only get it by mail from one of three authorized vendors. Apparently it is new enough that the drug company is keeping close tabs on patients who take it. I still do not have it in my hands, but I'm thinking it's going to cost closer to the doctor's estimate of $2000/month instead of the social worker's $500/month. I was recording drug costs today and in the first half of this year I have spent one-fifth what I spent in the last 4 months of 2008. It all becomes relative I guess.
Finally the concoction labeled "Magic Mouth" (lidocain/mylanta/benedryl) to prevent the mouth sores from returning in the absence of an anti-fungal drug. Mouth sores are nasty things and I hope I never get another one. I had them very bad last week after no anti-fungal medicine over Memorial Day weekend.
So, still no news of a transplant schedule. Still lots of talk about it. Still some pain in the eye, but better every day. (The eye is really non-news--inconsequential even.)
Meanwhile, Conor and Annie are coming for a visit tomorrow with Harrison and I can't wait to squeeze that little guy. Sisters Janice and Lori, and sis-in-law Suzanne have worked at my house this week getting it ready for Cathi to live there. They moved my office upstairs, cleaned everything and pronounced it "SANITIZED."
I will spend the night at my own house Saturday night and see how I feel. Frankly I am very nervous. Partly because the last time I spent the night I woke up sick and spent 32 days in the hospital; and partly because M&D's house has become sort of a haven for me. I realize how fragile this feeling good is and I want to keep it around.
Wednesday, June 3, 2009
Finally! an update.
Hello everyone,
Sorry I have taken so long to post an update. My treatment has been an ever changing target and still is. I got some bee in my bonnet in the hospital last week about being on the computer and I just did not even boot up until late yesterday. A week with no computer--only the Blackberry. Perhaps it has to do with summer camp season: I always looked forward to a week with no computer while I was at camp.
I came home from the hospital Friday evening with no PICC line and no IV line. So Saturday and Sunday at the clinic I got stuck. Four times on Saturday. Mercifully only once on Sunday. New PICC line went in Monday....a more painful process than in the past. It's still pretty sore but feeling better.
Thursday evening in the hospital while I was eating supper, I took a deep breath and felt a wheeze in my left lung. I immediately became short of breath and punched the call light. I informed the aide that I had a wheeze and was short of breath and the entire nurse's station showed up at my door. We were all in a panic. My nurse for the day was the only one on the floor that I didn't know and she checked everything and said I sounded good, the stats were good, that I really was breathing normally. She called respiratory for a breathing treatment and she called the doctor. Respiratory showed up and pronounced me breathing normally with good blood oxygen level. The nurse came back in and when I asked her what the doctor said she confessed she hadn't called him. I insisted she call him and he ordered a chest x-ray which looked good. So this new wheeze is scar tissue rubbing and breaking up in my lung. SIGH OF RELIEF. DEEEEEEEP SIGH OF RELIEF. (I really should have just taken an Ativan and got over myself!)
I am sure that I can overcome pneumonia again. But if I have to, I would like it to be in connection with a transplant and not some annoying infection.
Meanwhile I developed an inflamation in my right eye called Iritis or Uveitis, painful but not really significant in the scheme of things. Because my white cell count is so low the BMT docs insisted I see my eye doc who graciously admitted me through the back door at the end of his day, confirmed Iritis and dosed me up with Prednizone drops. So the eye is improving. Not as fast as when I am totally healthy, but fast enough.
Really, if my body was as good as I look and feel, life would be just about perfect. I don't have a transplant schedule yet because there are still balls in the air. The bone marrow biopsy from 2 weeks ago was good so I think that buys us a little time to decide all this. Right now we are waiting on a ruling from the infectious disease doctor on whether to take the antibiotic for 10 days or 30 days. The strep infection in my PICC line last week was the exact same infection I had in February so there is a possibility I am carrying it around somewhere in my body.
Next concern is my liver. Liver counts are way way high after last week. They have changed the anti-fungal 3x in 10 days to try to find something less aggravating. I am to start an oral chelator drug (which leeches the iron out of my liver) but so far have not been able to get the scrip filled. It's been a back and forth between the pharmacies, the social workers and the clinic pharmacist. I'm hoping for some good news on that today.
So I am back to daily clinic visits. They should be shorter but sometimes they aren't. Depends on the nurse and what is going on. I'm getting an IV antibiotic for the infection and a different IV anti-fungal which doesn't take as long to deliver. This is okay. I think I might feel good enough today to drive myself again, and my appointment is not til noon.
On other fronts, I enjoyed a cup of joe today for the first time in months. Coffee has not tasted good at all since about the first of the year. I reckon this means I have no chemo in my system right now, though my pill pile looks like a food group twice a day. Dr. Ganguly ordered me to stop taking anything unnecessary (e.g. vitamins) which left only the really large pills and one small one.
So raise a Starbucks for survivors and I'll keep you posted.
Cathi
Sorry I have taken so long to post an update. My treatment has been an ever changing target and still is. I got some bee in my bonnet in the hospital last week about being on the computer and I just did not even boot up until late yesterday. A week with no computer--only the Blackberry. Perhaps it has to do with summer camp season: I always looked forward to a week with no computer while I was at camp.
I came home from the hospital Friday evening with no PICC line and no IV line. So Saturday and Sunday at the clinic I got stuck. Four times on Saturday. Mercifully only once on Sunday. New PICC line went in Monday....a more painful process than in the past. It's still pretty sore but feeling better.
Thursday evening in the hospital while I was eating supper, I took a deep breath and felt a wheeze in my left lung. I immediately became short of breath and punched the call light. I informed the aide that I had a wheeze and was short of breath and the entire nurse's station showed up at my door. We were all in a panic. My nurse for the day was the only one on the floor that I didn't know and she checked everything and said I sounded good, the stats were good, that I really was breathing normally. She called respiratory for a breathing treatment and she called the doctor. Respiratory showed up and pronounced me breathing normally with good blood oxygen level. The nurse came back in and when I asked her what the doctor said she confessed she hadn't called him. I insisted she call him and he ordered a chest x-ray which looked good. So this new wheeze is scar tissue rubbing and breaking up in my lung. SIGH OF RELIEF. DEEEEEEEP SIGH OF RELIEF. (I really should have just taken an Ativan and got over myself!)
I am sure that I can overcome pneumonia again. But if I have to, I would like it to be in connection with a transplant and not some annoying infection.
Meanwhile I developed an inflamation in my right eye called Iritis or Uveitis, painful but not really significant in the scheme of things. Because my white cell count is so low the BMT docs insisted I see my eye doc who graciously admitted me through the back door at the end of his day, confirmed Iritis and dosed me up with Prednizone drops. So the eye is improving. Not as fast as when I am totally healthy, but fast enough.
Really, if my body was as good as I look and feel, life would be just about perfect. I don't have a transplant schedule yet because there are still balls in the air. The bone marrow biopsy from 2 weeks ago was good so I think that buys us a little time to decide all this. Right now we are waiting on a ruling from the infectious disease doctor on whether to take the antibiotic for 10 days or 30 days. The strep infection in my PICC line last week was the exact same infection I had in February so there is a possibility I am carrying it around somewhere in my body.
Next concern is my liver. Liver counts are way way high after last week. They have changed the anti-fungal 3x in 10 days to try to find something less aggravating. I am to start an oral chelator drug (which leeches the iron out of my liver) but so far have not been able to get the scrip filled. It's been a back and forth between the pharmacies, the social workers and the clinic pharmacist. I'm hoping for some good news on that today.
So I am back to daily clinic visits. They should be shorter but sometimes they aren't. Depends on the nurse and what is going on. I'm getting an IV antibiotic for the infection and a different IV anti-fungal which doesn't take as long to deliver. This is okay. I think I might feel good enough today to drive myself again, and my appointment is not til noon.
On other fronts, I enjoyed a cup of joe today for the first time in months. Coffee has not tasted good at all since about the first of the year. I reckon this means I have no chemo in my system right now, though my pill pile looks like a food group twice a day. Dr. Ganguly ordered me to stop taking anything unnecessary (e.g. vitamins) which left only the really large pills and one small one.
So raise a Starbucks for survivors and I'll keep you posted.
Cathi
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