It was another up & down night in the hospital. This time it was up and down fevers all night. The pic line cultures came back positive for Staff, so the culprit for the fevers has been found. In the middle of the night new pic lines were ordered and at 2:30am the team was assembled to insert new pic lines into her right arm. This time a new location was picked and the lines went right in. So after all the excitement was over and the X-Ray came in and verified the pic lines were in correctly on the first pass.
Dr Ganguly came in happy that the staff was identified, noting that these things just happen. Not the cause of anything that anyone does, it just happens. So the treatment is a daily antibiotic drip. The good news was a going back to the original plan and going home on Monday if the fevers disappeared. But, he was quick to note that she was very susceptible to infections and it may happen again and she would be back at the hospital.
The fevers did not go away and the day was spent watching fevers get up to 100.5 degrees, then some Tylenol and then the fever would drop.
Food is still slow going down and the diet is mostly jello and orange flavored ice. But the esophagus is healing well and even though pills go down slowly, they go down without damage. j Just when all the excitement had settled down the Dr ordered Lasix to drain the fluid build up. Being in the hospital with constant fluids coming in the IVs' can create fluid build up in the chest. So the Lasix was ordered to keep the fluids buildup down, even though the lungs still sound clear.
So with the fevers it is unlikely Cathi will get home on Monday, but it is encouraging to know that the infection has been identified and the cause of the fevers is being treated.
Sunday, July 25, 2010
Saturday, July 24, 2010
Not another boring Post
The day of the boring post ended with a trip the hospital for some platelets. The platelets were the easy part. It was when the nurse showed up with 4 bags of potassium that it was exciting. Each bag is only 50ml, but has to drip over an hour. So Cathi got fluids, platelets, potassium and fell right to sleep. While her donor host stayed up in the hospital. This was Thursday evening.
Friday after losing to much weight she was admitted to the hospital, in order to watch her closer. The below is Cathi's note going into the hospital.
Hello everyone,
After a somewhat chaotic week I have checked in to the "big house" room 4101.
I was having trouble eating and drinking without pain and I vomited blood a couple of times. So today they did an endoscopy and determined the problem is my esophagus is oozing blood--a side effect of the chemo.
So I'm in for the weekend and I'll have a diet of clear liquids along with a Nexium IV. Who knew they could do that? Already I have been able to swallow liquids without pain so I expect the gullet to heal quickly. The good news is there is no esophageal damage causing the bleeding.
I cancelled my trip to Italy today before all this happened. I was using a lot of energy fretting about it and I need this energy to work on my recovery. Janet and Robbie were magnanimous about it which helps.
I learn bits and pieces about my treatment plan every day. I guess it is going through revisions constantly as the doctors talk to other transplant centers. Today I heard that there is a plan for a second round of chemo 8 weeks after the first. It is frustrating to feel like I am not on top of things as I think I usually am. Perhaps getting Italy out of my head will make room for more treatment info. And hopefully seeing docs regularly will net more information too.
So I'm putting my money on the Revlimid and getting ready to paddle like crazy.
Friday after losing to much weight she was admitted to the hospital, in order to watch her closer. The below is Cathi's note going into the hospital.
Hello everyone,
After a somewhat chaotic week I have checked in to the "big house" room 4101.
I was having trouble eating and drinking without pain and I vomited blood a couple of times. So today they did an endoscopy and determined the problem is my esophagus is oozing blood--a side effect of the chemo.
So I'm in for the weekend and I'll have a diet of clear liquids along with a Nexium IV. Who knew they could do that? Already I have been able to swallow liquids without pain so I expect the gullet to heal quickly. The good news is there is no esophageal damage causing the bleeding.
I cancelled my trip to Italy today before all this happened. I was using a lot of energy fretting about it and I need this energy to work on my recovery. Janet and Robbie were magnanimous about it which helps.
I learn bits and pieces about my treatment plan every day. I guess it is going through revisions constantly as the doctors talk to other transplant centers. Today I heard that there is a plan for a second round of chemo 8 weeks after the first. It is frustrating to feel like I am not on top of things as I think I usually am. Perhaps getting Italy out of my head will make room for more treatment info. And hopefully seeing docs regularly will net more information too.
So I'm putting my money on the Revlimid and getting ready to paddle like crazy.
Wednesday, July 21, 2010
A boring post
Clinic day today. I had a restless night with heart dancing. I guess that's part of the chemo and other drugs I have. I can sit up and bear down to stop it, but it kept starting again last night. Very distracting. Gives me a better understanding of why it rattles my mother so much. I've never had it last so long.
WBC .3, Platelets 5, Hemoglobin 9.8
Counts are going down pretty fast. I got platelets today but still a pretty short day at the clinic. Besides that I slept most of the time. I came home and slept some more. Sara and I hooked up the Caspofungin, simple. She is a pro.
Cousin Jason came over and helped cook dinner and Walt is here to spend the night. Sara went off for a night with her husband.
Mom and Dad are still at the lake with Mari and her husband and sister Lori. Having a great time. This is a good thing.
Seems like there should be more news or humor or something but I'm flat out of originality. I'm taking Ativan to keep from getting nauseated and plenty of other meds as well.
The current schedule is clinic every other day. It's nice to have a day off in between. Not that I am accomplishing a whole lot, but it's nice to not have to get up every morning and rush to shower and eat and get down there. Thanks home health care for the IV Caspo.
From your boring patient.
Cathi
WBC .3, Platelets 5, Hemoglobin 9.8
Counts are going down pretty fast. I got platelets today but still a pretty short day at the clinic. Besides that I slept most of the time. I came home and slept some more. Sara and I hooked up the Caspofungin, simple. She is a pro.
Cousin Jason came over and helped cook dinner and Walt is here to spend the night. Sara went off for a night with her husband.
Mom and Dad are still at the lake with Mari and her husband and sister Lori. Having a great time. This is a good thing.
Seems like there should be more news or humor or something but I'm flat out of originality. I'm taking Ativan to keep from getting nauseated and plenty of other meds as well.
The current schedule is clinic every other day. It's nice to have a day off in between. Not that I am accomplishing a whole lot, but it's nice to not have to get up every morning and rush to shower and eat and get down there. Thanks home health care for the IV Caspo.
From your boring patient.
Cathi
Tuesday, July 20, 2010
Some relatively good news
I have a day off from the clinic today. I will be getting the anti-fungal drug Caspofungin daily via IV, but home health care is going to set me up with the tools to do it at home. So I'll be free to move around and do things. These last five sedentary days have taken a toll. The caspo is to protect my lungs since they are prone to pneumonia when the counts drop. So far only the platelets have dropped significantly.
The good news is that the chloromas tested positive for 5q-. This is the enemy we know. I started taking Revlimid last week as soon as I had the diagnosis so we will continue that. Together with the chemo we hope to knock it out quickly. 8 weeks.
An odd note is that I met with Dr. McGuirk who is normally ultra optimistic and he had a long face. "This sucks," he said. He had just returned from a long vacation and the first thing up was my boob leukemia. I think his head was not quite in the game yet either. We are still positive with the marrow being 100% donor. Whether a booster will be possible at the end of this treatment will depend on the amount of graft vs. host still present. Right now there is still quite a lot.
My cousin Gail returned to Denver yesterday but not before scoring all 3 Austin Powers movies so I'll get all up to date with the Fembots and go around saying stupid things like "yeah baby." Cousin Sara will be here the next few days. Friend Sara brought dinner last night and neighbor Jenn brought fresh roasting ears from her parents' place. All kind things.
All much appreciated.
Today I want to run some errands, set up the sewing center, and perhaps begin clearing things off the dining room table. It has become a clearing house for items on their way someplace else. And it is a BIG table so lotsa stuff.
Conor sent some new pics of the babies so I will post a couple of those when I get them on the right computer.
Friends are sending much appreciated jokes. And I am thinking about what to do to get my mojo running again.
~Cathi
The good news is that the chloromas tested positive for 5q-. This is the enemy we know. I started taking Revlimid last week as soon as I had the diagnosis so we will continue that. Together with the chemo we hope to knock it out quickly. 8 weeks.
An odd note is that I met with Dr. McGuirk who is normally ultra optimistic and he had a long face. "This sucks," he said. He had just returned from a long vacation and the first thing up was my boob leukemia. I think his head was not quite in the game yet either. We are still positive with the marrow being 100% donor. Whether a booster will be possible at the end of this treatment will depend on the amount of graft vs. host still present. Right now there is still quite a lot.
My cousin Gail returned to Denver yesterday but not before scoring all 3 Austin Powers movies so I'll get all up to date with the Fembots and go around saying stupid things like "yeah baby." Cousin Sara will be here the next few days. Friend Sara brought dinner last night and neighbor Jenn brought fresh roasting ears from her parents' place. All kind things.
All much appreciated.
Today I want to run some errands, set up the sewing center, and perhaps begin clearing things off the dining room table. It has become a clearing house for items on their way someplace else. And it is a BIG table so lotsa stuff.
Conor sent some new pics of the babies so I will post a couple of those when I get them on the right computer.
Friends are sending much appreciated jokes. And I am thinking about what to do to get my mojo running again.
~Cathi
Monday, July 19, 2010
Monday, Final day of chemo
The chemo has been going smoothly. I'm actually gaining a little weight so that's a pretty good indicator that the stomach has stayed settled. I'm aiming to eat 70-90 grams of protein every day and if I slip in a little snack like an ice cream bar, that ups the calorie count considerably.
Plus I have been laying around a lot. Four hours at the clinic to get the chemo, then not a lot of activity at home. I seem to rev up around 5 or 6 o'clock in the evening and go tidying. I walk the halls of the clinic, though they are VERY busy at times. And I've walked the aisles of a couple of stores just to get some steps in.
I expect to see Dr. McGuirk today and get results of the outstanding tests. All the cultures that they have run following the two fevers I've had came back negative. So that leaves the biopsy for which I'm holding my breath.
This all came up kind of suddenly. I do regular self exams of my breasts. But one day in the shower I noticed a very large mass in my right breast. I often get cysts and I'd been drinking a lot of coffee so I assumed that's what it was and I didn't say anything for a week or so. Then I told the nurse I needed a mammogram to look at this weird lump and she said oh, it's probably graft v. host and just have the doctor look at it next week. The doctor said that doesn't feel like graft v. host and ordered a biopsy. This was in the middle of all the 1 year workup tests and I didn't say anything because I didn't want to worry folks, and because nobody at the clinic was particularly worried.
I went in for the biopsy and the radiologist (very pointed head) would not do it because my platelets were only 67. He insisted I had to have an infusion of platelets before he would do a biopsy, pointing out that we weren't in a rush here. So we scheduled another day to go to the clinic and get platelets, then go downstairs and get the biopsy. Surprise, the platelets were 73 and the blood bank wouldn't even send platelets for a count that high. Three hours with needles for nothing.
So I go down for the biopsy and Dr. Pointed Head comes in and blows smoke up my skirt about having platelets on standby if I need them. I'm laying on the table with no IV. I KNOW the blood bank wouldn't send them over, and even if they did by the time the nurse put in an IV and hooked up platelets, simple pressure would have stopped any bleeding. Bite me.
So he proceeds with the biopsy, all the while telling me how good he is at doing it and calling me ma'am. I said "I'm Cathi and I'm fine." He finished and he said "Now that wasn't bad was it?" I replied "That's what I should say to you, you're the one who didn't want to do it." When he came back in to do the second breast he was slightly more solicitous but he is a poster boy for doctors with a poor bedside manner who become radiologists.
Everyone thought, including Dr. Pointed Head, that the biopsy was to determine whether the lumps were graft vs. host or cysts. Nobody was expecting them to be leukemia. The second lump turned up in between the biopsy order and the appointment. It's not as large, but still good sized. Just overnight.
So these are chloromas. Colonies of leukemia cells in tissue rather than blood. The treatment is basically the same. Kill the leukemia. The chemo we are using has a 35% success rate. As always, I might as well be in the 35%. There are some other options, but this looks like the best one.
Dr. Abhyankar gave me a little pep talk about how positive I am and how no matter what happened, I've stayed positive through a long course of treatment. So just keep the positive attitude and we'll get through this as well.
He is careful to say that they don't have a lot of experience with this; that none of the bone marrow centers do. I can tell when one of the doctors or nurse practitioners sees me after they've been chatting and they come up with ideas. They are always more upbeat, sometimes even excited.
Of course today I expect to see Dr. McGuirk and he is always excited so I'm looking forward to that.
~Cathi
Plus I have been laying around a lot. Four hours at the clinic to get the chemo, then not a lot of activity at home. I seem to rev up around 5 or 6 o'clock in the evening and go tidying. I walk the halls of the clinic, though they are VERY busy at times. And I've walked the aisles of a couple of stores just to get some steps in.
I expect to see Dr. McGuirk today and get results of the outstanding tests. All the cultures that they have run following the two fevers I've had came back negative. So that leaves the biopsy for which I'm holding my breath.
This all came up kind of suddenly. I do regular self exams of my breasts. But one day in the shower I noticed a very large mass in my right breast. I often get cysts and I'd been drinking a lot of coffee so I assumed that's what it was and I didn't say anything for a week or so. Then I told the nurse I needed a mammogram to look at this weird lump and she said oh, it's probably graft v. host and just have the doctor look at it next week. The doctor said that doesn't feel like graft v. host and ordered a biopsy. This was in the middle of all the 1 year workup tests and I didn't say anything because I didn't want to worry folks, and because nobody at the clinic was particularly worried.
I went in for the biopsy and the radiologist (very pointed head) would not do it because my platelets were only 67. He insisted I had to have an infusion of platelets before he would do a biopsy, pointing out that we weren't in a rush here. So we scheduled another day to go to the clinic and get platelets, then go downstairs and get the biopsy. Surprise, the platelets were 73 and the blood bank wouldn't even send platelets for a count that high. Three hours with needles for nothing.
So I go down for the biopsy and Dr. Pointed Head comes in and blows smoke up my skirt about having platelets on standby if I need them. I'm laying on the table with no IV. I KNOW the blood bank wouldn't send them over, and even if they did by the time the nurse put in an IV and hooked up platelets, simple pressure would have stopped any bleeding. Bite me.
So he proceeds with the biopsy, all the while telling me how good he is at doing it and calling me ma'am. I said "I'm Cathi and I'm fine." He finished and he said "Now that wasn't bad was it?" I replied "That's what I should say to you, you're the one who didn't want to do it." When he came back in to do the second breast he was slightly more solicitous but he is a poster boy for doctors with a poor bedside manner who become radiologists.
Everyone thought, including Dr. Pointed Head, that the biopsy was to determine whether the lumps were graft vs. host or cysts. Nobody was expecting them to be leukemia. The second lump turned up in between the biopsy order and the appointment. It's not as large, but still good sized. Just overnight.
So these are chloromas. Colonies of leukemia cells in tissue rather than blood. The treatment is basically the same. Kill the leukemia. The chemo we are using has a 35% success rate. As always, I might as well be in the 35%. There are some other options, but this looks like the best one.
Dr. Abhyankar gave me a little pep talk about how positive I am and how no matter what happened, I've stayed positive through a long course of treatment. So just keep the positive attitude and we'll get through this as well.
He is careful to say that they don't have a lot of experience with this; that none of the bone marrow centers do. I can tell when one of the doctors or nurse practitioners sees me after they've been chatting and they come up with ideas. They are always more upbeat, sometimes even excited.
Of course today I expect to see Dr. McGuirk and he is always excited so I'm looking forward to that.
~Cathi
Saturday, July 17, 2010
Early start to Chemo Day 3
This morning I woke up with a high fever about 4am and after calling the doctor, Gail and Mark and I loaded up and went to the hospital. Blood cultures, antibiotics, fluids and sleep. We went from there straight to the clinic and got the regular chemo.
Still no results of anything. Not from the biopsy, not from the other little tests they've been running.
This morning as I left the hospital, the day shift was getting started and the nurses were all so happy to see me (in the bittersweet way.) They said I looked good, and even sick I probably do look better than when they last saw me. We talked about my new grandbaby and their new dogs. It was just really positive. "If anyone can do it you can." "Just a bump in the road for you."
This afternoon I went back to the hospital to get the take home pack disconnected and saw a different bunch of nurses and they were very positive. It was good to let all that wash over me. We had a laugh about boob leukemia.
And the best part is if I have any more fevers, take Tylenol and go back to sleep. I don't have to call. Long as the fever goes down I'm good. They reckon the fever is just from the chemo and nothing sinister.
Still eating and drinking. I am a little weak but I get bursts of energy through the day and get a few things done. Conor went home today to spend time with his babies that he hasn't seen for about 10 days while Annie has been visiting her parents. Having him here was a shot in the arm. Mark is just awesome to have around. Both boys waited on me as much as I would let them. Mark will be here through tomorrow.
~Cathi
Still no results of anything. Not from the biopsy, not from the other little tests they've been running.
This morning as I left the hospital, the day shift was getting started and the nurses were all so happy to see me (in the bittersweet way.) They said I looked good, and even sick I probably do look better than when they last saw me. We talked about my new grandbaby and their new dogs. It was just really positive. "If anyone can do it you can." "Just a bump in the road for you."
This afternoon I went back to the hospital to get the take home pack disconnected and saw a different bunch of nurses and they were very positive. It was good to let all that wash over me. We had a laugh about boob leukemia.
And the best part is if I have any more fevers, take Tylenol and go back to sleep. I don't have to call. Long as the fever goes down I'm good. They reckon the fever is just from the chemo and nothing sinister.
Still eating and drinking. I am a little weak but I get bursts of energy through the day and get a few things done. Conor went home today to spend time with his babies that he hasn't seen for about 10 days while Annie has been visiting her parents. Having him here was a shot in the arm. Mark is just awesome to have around. Both boys waited on me as much as I would let them. Mark will be here through tomorrow.
~Cathi
Friday, July 16, 2010
Chemo - Day 2
No biopsy results yet. I saw Dr. Ganguly today at the clinic and he was very upbeat. He said it will take 7 to 10 days for the counts to bottom out, then 4 to 5 weeks for them to come back up. When they come back up we will do another PET scan to make sure there is no more chloroma. I like the sound of that.
He described the chloromas he as seen as small, describing a very small circle with his finger and thumb. That's me, always different. My dad told me from a young age to "be an individual." I guess it's in my blood (pun intended.)
My kidneys showed high uric acid so I got another drug for that. That is one of the things they will be watching closely. This morning they drew blood in different color tubes for the special tests of my liver and kidneys. I'm pretty familiar with what each colored top on the vials for blood means so now I have added a new blue to my knowledge base.
Conor is here and took me to the clinic today. We watched the British Open, even during the hour or so it was called for high winds. He did a lot of work, I did a lot of trying to get comfortable. For some reason my butt just hurt. No matter how I adjusted the bed. I did the crossword puzzle and it was handy having Conor there for the sports questions I didn't know. (Sometimes I text him with these questions to solve a puzzle.)
Mark arrived this evening. Cousin Gail arrived this morning. Mari and Mom and Gail went to work on the house and it is now thoroughly sanitized and ready for neutropenic living. Which is the plan from now on. No fresh food--it all has to be cooked. No raw nuts or pickles or tofu or anything fermented. Lots of protein.
Then there is the "use only this bathroom" and nobody else can use this bathroom. Sanitize hands all the time and wash them in between.
But I will be at home and I can sew and I have a few projects sitting here waiting for my needle.
I have been able to stave off the nausea with Ativan so far. I can feel the chemo brain fog drifting in. I keep saying I don't have my fight on, but Conor says I do, and Mark says I do. They say you're asking what's the next thing and you're doing it. That's how you do these things. That's fighting. So maybe it's just that I still have moments of tears and fears that are rattling me.
I reckon that's normal. Got tougher odds, got oddball cancer, and got a tired trooper.
~Cathi
He described the chloromas he as seen as small, describing a very small circle with his finger and thumb. That's me, always different. My dad told me from a young age to "be an individual." I guess it's in my blood (pun intended.)
My kidneys showed high uric acid so I got another drug for that. That is one of the things they will be watching closely. This morning they drew blood in different color tubes for the special tests of my liver and kidneys. I'm pretty familiar with what each colored top on the vials for blood means so now I have added a new blue to my knowledge base.
Conor is here and took me to the clinic today. We watched the British Open, even during the hour or so it was called for high winds. He did a lot of work, I did a lot of trying to get comfortable. For some reason my butt just hurt. No matter how I adjusted the bed. I did the crossword puzzle and it was handy having Conor there for the sports questions I didn't know. (Sometimes I text him with these questions to solve a puzzle.)
Mark arrived this evening. Cousin Gail arrived this morning. Mari and Mom and Gail went to work on the house and it is now thoroughly sanitized and ready for neutropenic living. Which is the plan from now on. No fresh food--it all has to be cooked. No raw nuts or pickles or tofu or anything fermented. Lots of protein.
Then there is the "use only this bathroom" and nobody else can use this bathroom. Sanitize hands all the time and wash them in between.
But I will be at home and I can sew and I have a few projects sitting here waiting for my needle.
I have been able to stave off the nausea with Ativan so far. I can feel the chemo brain fog drifting in. I keep saying I don't have my fight on, but Conor says I do, and Mark says I do. They say you're asking what's the next thing and you're doing it. That's how you do these things. That's fighting. So maybe it's just that I still have moments of tears and fears that are rattling me.
I reckon that's normal. Got tougher odds, got oddball cancer, and got a tired trooper.
~Cathi
Thursday, July 15, 2010
Outpatient Chemo
Things have changed and morphed by the hour over the last few days so I'll just get the current situation ticked off and another time I will give the low down on how we got here.
The first good news is I'm getting treatment as an outpatient. It took an extra day to get things organized but it started today. I spend several hours at the clinic, then leave with a take home pouch of chemo and a special chemo-spill kit. We civilians are not allowed to disconnect the pump because it's chemo, but my nurse of the day, Mary, volunteered to come to the house an unhook it so I don't have to wear it all night long. (And so I can shower and change clothes.)
The next good news is the PET scan shows no cancer except the lumps in each breast.
More good news is the insurance company approved the chemo drug clofarabine. They were balking and said it would take days and Dr Abhyankar didn't want to wait days and KU decided they would cover it if the insurance company would not. They put their money where their mouth is. However after Dr. A sent journal articles citing its efficacy, they agreed to cover it.
The PICC line went in smoothly--I was not looking forward to that. The last time I had one inserted it was a very uncomfortable, hour long slog with a lot of bleeding. Today's was just a few minutes.
This type of recurrence is rare. Not only has the KU team not seen it much, neither has any transplant center in the country. So they are all taking and sharing information to plan next steps.
The hope is that the chemo and the Revlimid will work together to shrink the tumors. And of course that my liver will not choke and the bone marrow will remain 100% donor or close.
Tomorrow we hope to have results of the biopsy showing 5q-.
I am bit horrified to be in this elite group. The fight in me has not taken hold. My sister Mari is here with me now. Conor and Mark are coming. My cousins Gail and Sara are coming and my sister Janice. So I have a lot of coverage up front here.
I'm guessing this will take about 2-3 months to work out. I want to stay at home, but of course I cannot be alone so I will be looking for companions. Mom & Dad are ready and willing to have me move back into their house but I have my place fixed up and comfortable and I would really like to be able to stay at home.
Ok. Check tomorrow. The plan changes at least twice a day. yesterday it changed hourly.
I'm thinking Fembots for a visual. Robot breasts firing bullets full of cancer cells. Anybody else remember this from Austin Powers?
~Cathi
The first good news is I'm getting treatment as an outpatient. It took an extra day to get things organized but it started today. I spend several hours at the clinic, then leave with a take home pouch of chemo and a special chemo-spill kit. We civilians are not allowed to disconnect the pump because it's chemo, but my nurse of the day, Mary, volunteered to come to the house an unhook it so I don't have to wear it all night long. (And so I can shower and change clothes.)
The next good news is the PET scan shows no cancer except the lumps in each breast.
More good news is the insurance company approved the chemo drug clofarabine. They were balking and said it would take days and Dr Abhyankar didn't want to wait days and KU decided they would cover it if the insurance company would not. They put their money where their mouth is. However after Dr. A sent journal articles citing its efficacy, they agreed to cover it.
The PICC line went in smoothly--I was not looking forward to that. The last time I had one inserted it was a very uncomfortable, hour long slog with a lot of bleeding. Today's was just a few minutes.
This type of recurrence is rare. Not only has the KU team not seen it much, neither has any transplant center in the country. So they are all taking and sharing information to plan next steps.
The hope is that the chemo and the Revlimid will work together to shrink the tumors. And of course that my liver will not choke and the bone marrow will remain 100% donor or close.
Tomorrow we hope to have results of the biopsy showing 5q-.
I am bit horrified to be in this elite group. The fight in me has not taken hold. My sister Mari is here with me now. Conor and Mark are coming. My cousins Gail and Sara are coming and my sister Janice. So I have a lot of coverage up front here.
I'm guessing this will take about 2-3 months to work out. I want to stay at home, but of course I cannot be alone so I will be looking for companions. Mom & Dad are ready and willing to have me move back into their house but I have my place fixed up and comfortable and I would really like to be able to stay at home.
Ok. Check tomorrow. The plan changes at least twice a day. yesterday it changed hourly.
I'm thinking Fembots for a visual. Robot breasts firing bullets full of cancer cells. Anybody else remember this from Austin Powers?
~Cathi
Tuesday, July 13, 2010
Some not good news
I have leukemia in my breasts. Big lumps appeared overnight and are apparently escaped leukemia cells that have now colonized. The medical term is "chloroma." Dr. Abhyankar hasn't seen one in 10 years.
So I go in the hospital tomorrow and start chemo. A 5 day regimen so hopefully I will get out Sunday or Monday. I started taking Revlimid again today. We think these two things will combine to kill it and seal the entry.
However, we are still gathering information. Tomorrow I will have another biopsy to determine if 5q- is present. We hope it is. We hope this is renegade cells still swirling around my body. Today I had a full body CT Scan that showed no other chloromas, but tomorrow I will have a PET scan to make sure.
The lumps or even the breasts could be removed surgically, but that is not a solution. The problem would still exist. You have to cut off the cells as they circulate.
PICC line, nausea, hair loss (no leg shaving!) neutropenic diet (no salad,) isolation, and all the other stuff that goes with chemo. This is another full blown round. I cancelled my hair cut and dentist appts.
The good news is that the bone marrow graft appears strong and 100% donor. We will see how things hold up through the chemo but at this point we're not talking about another transplant.
I don't quite have my head in the game. My head is saying "I thought we were finished paddling this canoe." But I am sure that I will figure out a way to consciously fight this.
It is again a game of action and reaction. Check the research. Check with other transplant centers. Check where we've been.
I guess I should think about some inspiring things to take with me tomorrow and have on the wall of the hospital room. Perhaps some pictures of Harrison and Ella. Perhaps that one big card that flushes when you open it.
~Cathi
So I go in the hospital tomorrow and start chemo. A 5 day regimen so hopefully I will get out Sunday or Monday. I started taking Revlimid again today. We think these two things will combine to kill it and seal the entry.
However, we are still gathering information. Tomorrow I will have another biopsy to determine if 5q- is present. We hope it is. We hope this is renegade cells still swirling around my body. Today I had a full body CT Scan that showed no other chloromas, but tomorrow I will have a PET scan to make sure.
The lumps or even the breasts could be removed surgically, but that is not a solution. The problem would still exist. You have to cut off the cells as they circulate.
PICC line, nausea, hair loss (no leg shaving!) neutropenic diet (no salad,) isolation, and all the other stuff that goes with chemo. This is another full blown round. I cancelled my hair cut and dentist appts.
The good news is that the bone marrow graft appears strong and 100% donor. We will see how things hold up through the chemo but at this point we're not talking about another transplant.
I don't quite have my head in the game. My head is saying "I thought we were finished paddling this canoe." But I am sure that I will figure out a way to consciously fight this.
It is again a game of action and reaction. Check the research. Check with other transplant centers. Check where we've been.
I guess I should think about some inspiring things to take with me tomorrow and have on the wall of the hospital room. Perhaps some pictures of Harrison and Ella. Perhaps that one big card that flushes when you open it.
~Cathi
Tuesday, July 6, 2010
Tiles of Hope and 1 yr workup
Today I hit the hospital and the clinic for my "1 year workup." The tests went as expected, but things happened that were thought provoking.
I started down at the hospital for a Pulmonary Function Test and that went well. The technician said my numbers were higher than last time. Hopefully this means that the GVHD is abating perhaps a teensy bit. The tech also mentioned that she had seen some patients whose lungs were really compromised by GVHD. Now, how lucky am I? My lung function is over 100% of normal. I was frustrated after the last one because it was only 115% or so instead of the pre-transplant 150%. I had a horrible time with my lungs after I got leukemia and I often asked if people with these kinds of lung problems ever recovered completely.
But I am one of the lucky ones today. I remember well not being able to suck in a proper breath when I was in intensive care. I was so irritated! I thought "I know how to breathe. Several different kinds of breath. And I can't do any of them." Today I do not ever have to gasp for breath.
Then I headed for the clinic for the blood work and bone marrow biopsy. I stepped off the elevator on the 3rd floor and there is a board with "Tiles of Hope" on it. I looked it over carefully and sure enough, there was my tile. Tiles of Hope was a program held at the clinic in December after I had the news that the graft was slipping and before Christmas. Patients and clinic staff had the opportunity to paint a ceramic tile with the design of their choice. I was worried I would not be able to go to Chicago for Christmas; the BMT team was pulling out all the stops to make sure I would. On the one hand I appreciated their efforts, but this fella at the conference table in my head was shouting "It's because this is your last hurrah. You're not going anywhere else after this."
So I got him shut up for a bit, and boldly painted a globe with a distorted map on it. An oversized Italy and Florida. Big black dots for Captiva Island, Chicago, Florence and Rome. I wrote "the world at my feet" and added some ruby slippers at the bottom. Mom gave me a pink Life is Good hat with a globe on it and when she handed it to me to cover my bald head, she said "Cathi, you have the world at your feet." I remember nurse Maurya sitting with me while I painted. As we walked back upstairs, I confided my fear that this was my last trip and she looked at me with complete sincerity and said "oh no. This is not your last trip. You're going to be going to Italy and to Florida." I believed her. So here is a pic of the entire board and of my little tile.
I marvelled this afternoon at the difference in me between when I painted that tile and when I spotted it today. I have been to Chicago three times! And I have a trip to Italy planned in October. I am one of the lucky ones.
Abby did the bone marrow biopsy and answered all my questions. The results of the liver biopsy showed nothing more sinister than GVHD and too much iron. I will find out later next steps for the liver. She counseled me to eat more protein, not because the number is low, but because I'm still having trouble with my feet swelling. So I reckon I will add a protein shake to the daily regimen. My hemoglobin was 11.8 today, something of a relief to me. It has dropped the last couple of times and that makes me nervous. My platelets were still 73 which Abby was happy about. She laughed and commented that other hospital departments went nuts when platelets were that low but bone marrow doesn't worry til they are much lower!
The liver counts have improved a little since they increased the dose of the medicine I'm taking for it. Other counts are beginning to hover around normal. I am very lucky.
Nurse Jenny in the biopsy room said I might not see her for a year now! I can't imagine going a whole year without a bone marrow biopsy. But Jenny and I will keep in touch via Facebook. Nurse Lauren drew my blood today and announced she is getting married in 10 days. Lauren was on the night staff at the hospital when I first got sick. She took care of me as I was getting very sick, running high fevers, and needing all kinds of care all night long. I ran into her often throughout my recovery but it seemed like every time I asked about a beau, she had just had her heart broken. I quit asking--I just hated to bring it up. So this was great news to hear, though I'm sure my son, Mark, will feel just a twinge. He thought Lauren was "hot."
So this day has given me many reasons to be grateful. I have pains and I am still weak, but I am getting better every day. I have lovely curly hair that I am enjoying. They tell me the curl won't last forever--just a couple of years. I went to a couple of social engagements over the long weekend and enjoyed myself, but I lasted for the duration of the parties. Today is Walt's birthday and I am so grateful that I have such a generous brother. That my entire family is so generous. It was very soothing when I was very ill, to know that my family was all pulling together for me.
And did I mention that my hairless days are over? I must shave my legs every day to wear shorts!
~Cathi
I started down at the hospital for a Pulmonary Function Test and that went well. The technician said my numbers were higher than last time. Hopefully this means that the GVHD is abating perhaps a teensy bit. The tech also mentioned that she had seen some patients whose lungs were really compromised by GVHD. Now, how lucky am I? My lung function is over 100% of normal. I was frustrated after the last one because it was only 115% or so instead of the pre-transplant 150%. I had a horrible time with my lungs after I got leukemia and I often asked if people with these kinds of lung problems ever recovered completely.
But I am one of the lucky ones today. I remember well not being able to suck in a proper breath when I was in intensive care. I was so irritated! I thought "I know how to breathe. Several different kinds of breath. And I can't do any of them." Today I do not ever have to gasp for breath.
Then I headed for the clinic for the blood work and bone marrow biopsy. I stepped off the elevator on the 3rd floor and there is a board with "Tiles of Hope" on it. I looked it over carefully and sure enough, there was my tile. Tiles of Hope was a program held at the clinic in December after I had the news that the graft was slipping and before Christmas. Patients and clinic staff had the opportunity to paint a ceramic tile with the design of their choice. I was worried I would not be able to go to Chicago for Christmas; the BMT team was pulling out all the stops to make sure I would. On the one hand I appreciated their efforts, but this fella at the conference table in my head was shouting "It's because this is your last hurrah. You're not going anywhere else after this."So I got him shut up for a bit, and boldly painted a globe with a distorted map on it. An oversized Italy and Florida. Big black dots for Captiva Island, Chicago, Florence and Rome. I wrote "the world at my feet" and added some ruby slippers at the bottom. Mom gave me a pink Life is Good hat with a globe on it and when she handed it to me to cover my bald head, she said "Cathi, you have the world at your feet." I remember nurse Maurya sitting with me while I painted. As we walked back upstairs, I confided my fear that this was my last trip and she looked at me with complete sincerity and said "oh no. This is not your last trip. You're going to be going to Italy and to Florida." I believed her. So here is a pic of the entire board and of my little tile.
I marvelled this afternoon at the difference in me between when I painted that tile and when I spotted it today. I have been to Chicago three times! And I have a trip to Italy planned in October. I am one of the lucky ones.
Abby did the bone marrow biopsy and answered all my questions. The results of the liver biopsy showed nothing more sinister than GVHD and too much iron. I will find out later next steps for the liver. She counseled me to eat more protein, not because the number is low, but because I'm still having trouble with my feet swelling. So I reckon I will add a protein shake to the daily regimen. My hemoglobin was 11.8 today, something of a relief to me. It has dropped the last couple of times and that makes me nervous. My platelets were still 73 which Abby was happy about. She laughed and commented that other hospital departments went nuts when platelets were that low but bone marrow doesn't worry til they are much lower!
The liver counts have improved a little since they increased the dose of the medicine I'm taking for it. Other counts are beginning to hover around normal. I am very lucky.
Nurse Jenny in the biopsy room said I might not see her for a year now! I can't imagine going a whole year without a bone marrow biopsy. But Jenny and I will keep in touch via Facebook. Nurse Lauren drew my blood today and announced she is getting married in 10 days. Lauren was on the night staff at the hospital when I first got sick. She took care of me as I was getting very sick, running high fevers, and needing all kinds of care all night long. I ran into her often throughout my recovery but it seemed like every time I asked about a beau, she had just had her heart broken. I quit asking--I just hated to bring it up. So this was great news to hear, though I'm sure my son, Mark, will feel just a twinge. He thought Lauren was "hot."
So this day has given me many reasons to be grateful. I have pains and I am still weak, but I am getting better every day. I have lovely curly hair that I am enjoying. They tell me the curl won't last forever--just a couple of years. I went to a couple of social engagements over the long weekend and enjoyed myself, but I lasted for the duration of the parties. Today is Walt's birthday and I am so grateful that I have such a generous brother. That my entire family is so generous. It was very soothing when I was very ill, to know that my family was all pulling together for me.
And did I mention that my hairless days are over? I must shave my legs every day to wear shorts!
~Cathi
Tuesday, June 29, 2010
One year anniversary
Today is one year from the date of my transplant. I feel a sense of peace writing that, living it, believing it.
I'm living at home, by myself again. I'm working. I'm travelling and planning. I'm doing things to my house. Sewing. Seeing friends, eating out, cooking in. All wonderful things.
The liver biopsy today was predictable with no complications. It was an interesting morning though. I spent a full two hours going from one part of the hospital to another doing the preparatory things. My letter with instructions to not eat after midnight and show up at 7:15 said to go to radiology first then admitting. Radiology said go to admitting first. Radiology did a sonogram of my liver and marked the spot between my ribs to stick the needle. The radiologist was a pleasant fellow who said my liver looked pretty good.
Then to the GI clinic, but back to the lab. A very young fellow was learning his way around the lab and I discovered he is a recent graduate of K-State when my arm bled and threatened to soil my purple sweatshirt. Likewise his mentor was a wildcat. A refreshing twist in a very blue and red hospital.
Finally to the GI clinic. Dr. Gilroy, who is Australian, had me sign the consent form and we chatted a bit. I told him Dr. Abhyankar said he always calls him "matey" on the phone. Dr. Gilroy replied "these guys confuse me with a sailor. I call him MATE." I must report that he is as good at the liver biopsy as he said he was. I was given sedation that put me to sleep after I was on the way back to the recovery room. It was over that fast. I contributed blood and tissue to a study. The nurse working on the study collection said they had only about 15 patients like me so it would be a real help to have my contribution. I was so willing...they have no idea how willing I am to help. The actual biopsy is done with a long hollow needle he inserts into my liver and removes a very small cylinder of tissue.
Fifteen patients "like me" is a clue about my situation as a transplant patient at KU. The nurses tell me things like "if there was a prize for the most weird treatments you would get it." And report the times the doctors sent me to the hospital from the clinic and did not feel good about it. We were all holding our breath about this last transplant. So many things were up in the air. I could not have a full transplant because my lungs were fragile and my liver was inflamed. I could not have an unrelated donor transplant because of the lungs. All the things the doctors had planned to do to make the second transplant work, they could not do.
But as I said last night, they are nothing if not creative. I received a different chemo as part of the mini-transplant. It was horrid but it worked. And they poured every single stem cell they got from Walt into me instead of just the amount called for according to my weight.
It was a very long haul, and very difficult. The few days I expected to be in the hospital turned into 7 weeks. I didn't eat for much of that time. The lungs were up and down. The acute graft v. host was extreme. (Acute refers to gvhd symptoms in the first 3 months after the transplant.)
Ah, but here I am a year later. Thriving.
I am glad to have the liver biopsy out of the way.
Walt came over tonight and brought me a blooming potted plant. I'm thrilled to have something blooming for my house. I feel pretty good and expect to go home tomorrow after spending the night with Mom & Dad.
Conor and Annie will be Oklahoma the next few days showing off their babies. I will miss that opportunity to see them, but this biopsy was already postponed from an appointment during my May trip to Chicago. I will see them soon.
Thanks to all of you who read the blog. To those of you who comment and those of you who don't. The blog is good for me. I think when I post regularly, I don't struggle with the blues. The blog is not going away. There might be more daily trivia included but this recovery is still a work in progress so I will continue to update. If you have an opinion, I welcome it. Here or via email.
My canoe is steady in mid-stream heading down river. I'm thinking of things like sun defense and balance so this tells me I'm getting better. The visual world in my head is broadening.
~Cathi
I'm living at home, by myself again. I'm working. I'm travelling and planning. I'm doing things to my house. Sewing. Seeing friends, eating out, cooking in. All wonderful things.
The liver biopsy today was predictable with no complications. It was an interesting morning though. I spent a full two hours going from one part of the hospital to another doing the preparatory things. My letter with instructions to not eat after midnight and show up at 7:15 said to go to radiology first then admitting. Radiology said go to admitting first. Radiology did a sonogram of my liver and marked the spot between my ribs to stick the needle. The radiologist was a pleasant fellow who said my liver looked pretty good.
Then to the GI clinic, but back to the lab. A very young fellow was learning his way around the lab and I discovered he is a recent graduate of K-State when my arm bled and threatened to soil my purple sweatshirt. Likewise his mentor was a wildcat. A refreshing twist in a very blue and red hospital.
Finally to the GI clinic. Dr. Gilroy, who is Australian, had me sign the consent form and we chatted a bit. I told him Dr. Abhyankar said he always calls him "matey" on the phone. Dr. Gilroy replied "these guys confuse me with a sailor. I call him MATE." I must report that he is as good at the liver biopsy as he said he was. I was given sedation that put me to sleep after I was on the way back to the recovery room. It was over that fast. I contributed blood and tissue to a study. The nurse working on the study collection said they had only about 15 patients like me so it would be a real help to have my contribution. I was so willing...they have no idea how willing I am to help. The actual biopsy is done with a long hollow needle he inserts into my liver and removes a very small cylinder of tissue.
Fifteen patients "like me" is a clue about my situation as a transplant patient at KU. The nurses tell me things like "if there was a prize for the most weird treatments you would get it." And report the times the doctors sent me to the hospital from the clinic and did not feel good about it. We were all holding our breath about this last transplant. So many things were up in the air. I could not have a full transplant because my lungs were fragile and my liver was inflamed. I could not have an unrelated donor transplant because of the lungs. All the things the doctors had planned to do to make the second transplant work, they could not do.
But as I said last night, they are nothing if not creative. I received a different chemo as part of the mini-transplant. It was horrid but it worked. And they poured every single stem cell they got from Walt into me instead of just the amount called for according to my weight.
It was a very long haul, and very difficult. The few days I expected to be in the hospital turned into 7 weeks. I didn't eat for much of that time. The lungs were up and down. The acute graft v. host was extreme. (Acute refers to gvhd symptoms in the first 3 months after the transplant.)
Ah, but here I am a year later. Thriving.
I am glad to have the liver biopsy out of the way.
Walt came over tonight and brought me a blooming potted plant. I'm thrilled to have something blooming for my house. I feel pretty good and expect to go home tomorrow after spending the night with Mom & Dad.
Conor and Annie will be Oklahoma the next few days showing off their babies. I will miss that opportunity to see them, but this biopsy was already postponed from an appointment during my May trip to Chicago. I will see them soon.
Thanks to all of you who read the blog. To those of you who comment and those of you who don't. The blog is good for me. I think when I post regularly, I don't struggle with the blues. The blog is not going away. There might be more daily trivia included but this recovery is still a work in progress so I will continue to update. If you have an opinion, I welcome it. Here or via email.
My canoe is steady in mid-stream heading down river. I'm thinking of things like sun defense and balance so this tells me I'm getting better. The visual world in my head is broadening.
~Cathi
Monday, June 28, 2010
1 year minus 1 day
Tomorrow will be one year from my transplant. It will also be my liver biopsy so I may not be able to post. I also may not be able to eat much so I went out and celebrated today. I bought 2 new charms for my bracelet: a 4 leaf clover and a World Health charm. I think that about sums it up, good health and good luck. Mom & Dad and I went out and ate steaks and enjoyed a glass of wine. Topped off by DQ Blizzards for me and Dad. (Really we're rednecks! Who else goes from a fine steakhouse to the Dairy Queen?) Here's a picture that is kind of dark, but still good. I will remark here how lucky I am to have had such attentive, careful and loving caregivers.
The last couple of weeks have been up and down which I think is what you call normal. I have been feeling very rebellious about the pills. I am really sick and tired of the pills. I actually threw them in the trash one night. It's difficult to swallow. There are a dozen or so to take. 4 are enormous and 2 more are awkward. (I know...some cheese to go with that whine?) Anyway about 3 days of skipping pills and I started having pains I hadn't had in a long while. That is some incentive to get back on the pill regimen. I dread it every time. I procrastinate. I take them in the morning last thing before I leave the house. I take them at night last thing before I go to bed. In the meantime, I fret about it while I'm procrastinating. I think I could write a sitcom. Or at least a few short pages of a neurotic performance. One time a pill stuck in my throat and I could not get it down. My mouth began to taste like old fish. I think this is the folic acid pill to make my feet tingle less. Which it does, but I really hate the taste of old fish. Ah well. It's not likely to change for a while. And I sure don't have much trouble taking a pain pill or a sleeping pill. So it's as much neurology as physiology.
The last couple of weeks have been up and down which I think is what you call normal. I have been feeling very rebellious about the pills. I am really sick and tired of the pills. I actually threw them in the trash one night. It's difficult to swallow. There are a dozen or so to take. 4 are enormous and 2 more are awkward. (I know...some cheese to go with that whine?) Anyway about 3 days of skipping pills and I started having pains I hadn't had in a long while. That is some incentive to get back on the pill regimen. I dread it every time. I procrastinate. I take them in the morning last thing before I leave the house. I take them at night last thing before I go to bed. In the meantime, I fret about it while I'm procrastinating. I think I could write a sitcom. Or at least a few short pages of a neurotic performance. One time a pill stuck in my throat and I could not get it down. My mouth began to taste like old fish. I think this is the folic acid pill to make my feet tingle less. Which it does, but I really hate the taste of old fish. Ah well. It's not likely to change for a while. And I sure don't have much trouble taking a pain pill or a sleeping pill. So it's as much neurology as physiology.
Other notes about the current state of my body. My nails are all breaking off, but still growing as if they've been fertilized. I need a pedicure every 3 weeks instead of every 6. I need a pedicure because I cannot comfortably reach my toes to do a number on them. In fact putting my socks on in the morning is an acrobatic performance. Perhaps not as ridiculous looking as attempting to get my britches off at night, but all amusing. I think the effects of the cortizone cream must be cumulative because my skin stops hurting and being very sensitive so I stop using the cream. Pretty soon, it hurts again. A fellow survivor told me that she wraps up in cling wrap at night, or has her husband wrap her. Slather with cortizone cream and wind up the cling wrap. The mere thought of wrapping myself makes me cringe with pain, but I may spend a few nights at Mom & Dad's to try this bit of therapy.
I have mild sores in my mouth which is a little bit dry. Inside each cheek I have very prominent ridges representing graft v. host. I keep a bottle of salt water by the sink and every time I wash my hands I rinse my mouth. This helps. Some things don't taste good like they did before I got sick. Wine and scotch for example. Other things that I wasn't crazy about really hit the spot, such as wheat beer. I think the mouth problems are related to the pills because during my rebellion things began to taste really good. And the dryness was less noticeable. Mere procrastination does not bring on this bit of relief; it must be a full fledged rebellion.
Mark came to visit for a weekend and put up shelves for me. I now have a mantel on my fireplace. I live in a split level house built in 1967 when "The Den" was king. The really nice houses had a den with wood paneling, rough hewn
ceiling beams and a big brick fireplace hulking over it all. Cozy I think was the word. The fireplace in my house, moreover, was placed square with the front door which blows any hope of symmetry in the room it illuminates. A couple of years ago Mark tore out the bricks and we put up wallboard and sconces and installed an electric fire. I love the electric fire--two punches on the remote and I have fire and heat. One more punch equals more heat. It looks real enough that people come in the front door and worry about the embers burning. Just after I got sick in 2008 my niece and her husband tiled the surround and now I have a mantel. Herewith the before and after for your viewing pleasure. Other home improvement tasks include replacing a light fixture by myself standing on a short ladder with my hands and arms up over my head. Take that lady physical therapist!
Mark came to visit for a weekend and put up shelves for me. I now have a mantel on my fireplace. I live in a split level house built in 1967 when "The Den" was king. The really nice houses had a den with wood paneling, rough hewn
ceiling beams and a big brick fireplace hulking over it all. Cozy I think was the word. The fireplace in my house, moreover, was placed square with the front door which blows any hope of symmetry in the room it illuminates. A couple of years ago Mark tore out the bricks and we put up wallboard and sconces and installed an electric fire. I love the electric fire--two punches on the remote and I have fire and heat. One more punch equals more heat. It looks real enough that people come in the front door and worry about the embers burning. Just after I got sick in 2008 my niece and her husband tiled the surround and now I have a mantel. Herewith the before and after for your viewing pleasure. Other home improvement tasks include replacing a light fixture by myself standing on a short ladder with my hands and arms up over my head. Take that lady physical therapist!
I continue to see friends and work. I work at least two hours every day. They are not all billable but they are productive. I am sharpening my mind, honing my troubleshooting skills and I am happy, well thrilled, that messing about with computers still charges my battery. I have a couple new customers, very small, but it gets the juices running and that's what I want. I look forward to being able to make a living again. Work long hours and late ones when called for.
Friday I went to eat Indian for the first time since I got well. I used to love a good curry but it did not hit the spot Friday. I switched to less spicy foods for lunch, but the damage was done. My belly suffered and my weekend social plans all went down the tube. Or perhaps I caught a mild bug somewhere even though I've had every kind of flu shot and immunization known to my doctors.
I saw Dr. Aljitawi last week. My counts are good though the platelets continue to drop. As with the other providers he wasn't worried about this. (The guy doing the liver biopsy tomorrow might worry but that remains to be seen.) Aljitawi said that if the liver biopsy shows what they expect, that the problem in my liver is caused by too much iron from too many transfusions, then I will start giving blood. Every two weeks or so they will drain a unit of blood until the iron returns to an acceptable level. I assume this will also drop my hemoglobin so I'm curious to see how long my body takes to rebuild those hemoglobin levels. My ferritin level was 3793 a month or so ago, and normal is 10-200. The human body simply cannot process the abundance of iron that comes with many, many transfusions. The iron builds up in the liver and causes problems. Without action, the iron does not return to normal levels. It requires intervention to reduce the count.
I listen to providers talk about options and next steps and I am struck by how fortunate I am to have this team of doctors and nurses who are creative and responsive. What an interesting field to be working in! I remember when I was in the hospital in February, 2009 with pneumonia and just could not catch a break. Dr. Abhyankar came in one day and said "we're running out of things to try." The next day Dr. McGuirk came in and the team had had a meeting and tossed about ideas and one stood out. They called other transplant centers who agreed it was worth a try and it worked! My poor old marrow began coughing up enough white cells to beat up the pneumonia and get me out of the hospital.
So it is a process of action and reaction. We are reaching the point in my recovery where we can be a little bit proactive, but most steps are still based on today's test results. Next Tuesday, July 6th, I have the "1 year workup." This consists of a pulmonary function test, drawing about a quart of blood (well it's 30 tubes or so,) and a bone marrow biopsy. I have an appointment to get the results on July 19th. I am still visiting the clinic every 2 weeks and Dr. Aljitawi mentioned extending it to 3 weeks, but he didn't do it. As a side note, there is a new phlebotomist at the clinic. His name is Carlos and he kneels to take my blood. I love him because he is the most painless sticker I've known. Or perhaps because he is adorable and kneeling before me.
Step by step. Lots of gratitude. Lots of wonder. and last but not least, lots of fun!
Friday I went to eat Indian for the first time since I got well. I used to love a good curry but it did not hit the spot Friday. I switched to less spicy foods for lunch, but the damage was done. My belly suffered and my weekend social plans all went down the tube. Or perhaps I caught a mild bug somewhere even though I've had every kind of flu shot and immunization known to my doctors.
I saw Dr. Aljitawi last week. My counts are good though the platelets continue to drop. As with the other providers he wasn't worried about this. (The guy doing the liver biopsy tomorrow might worry but that remains to be seen.) Aljitawi said that if the liver biopsy shows what they expect, that the problem in my liver is caused by too much iron from too many transfusions, then I will start giving blood. Every two weeks or so they will drain a unit of blood until the iron returns to an acceptable level. I assume this will also drop my hemoglobin so I'm curious to see how long my body takes to rebuild those hemoglobin levels. My ferritin level was 3793 a month or so ago, and normal is 10-200. The human body simply cannot process the abundance of iron that comes with many, many transfusions. The iron builds up in the liver and causes problems. Without action, the iron does not return to normal levels. It requires intervention to reduce the count.
I listen to providers talk about options and next steps and I am struck by how fortunate I am to have this team of doctors and nurses who are creative and responsive. What an interesting field to be working in! I remember when I was in the hospital in February, 2009 with pneumonia and just could not catch a break. Dr. Abhyankar came in one day and said "we're running out of things to try." The next day Dr. McGuirk came in and the team had had a meeting and tossed about ideas and one stood out. They called other transplant centers who agreed it was worth a try and it worked! My poor old marrow began coughing up enough white cells to beat up the pneumonia and get me out of the hospital.
So it is a process of action and reaction. We are reaching the point in my recovery where we can be a little bit proactive, but most steps are still based on today's test results. Next Tuesday, July 6th, I have the "1 year workup." This consists of a pulmonary function test, drawing about a quart of blood (well it's 30 tubes or so,) and a bone marrow biopsy. I have an appointment to get the results on July 19th. I am still visiting the clinic every 2 weeks and Dr. Aljitawi mentioned extending it to 3 weeks, but he didn't do it. As a side note, there is a new phlebotomist at the clinic. His name is Carlos and he kneels to take my blood. I love him because he is the most painless sticker I've known. Or perhaps because he is adorable and kneeling before me.
Step by step. Lots of gratitude. Lots of wonder. and last but not least, lots of fun!
~Cathi
Thursday, June 10, 2010
Back to Gilwell
Last Sunday I had dinner with my Wood Badge Patrol. The Owl patrol from C34-04. Six of the seven of us were able to get together. We have stayed in touch and gathered for dinner periodically. They all sent encouraging messages, called or visited while I was sick. The fireman, Steve, visited a couple of times in ICU. His first visit is one of the few things I remember from that time frame. I don't remember the second visit at all.
Anyway here we are. All checking in. Who is doing what in scouts? How is your troop, crew, pack? When are you going to camp and where? New district positions? Kids getting married? graduating from college? Life goes on. From left to right: John, Chris, Mark, AJ, me, Steve. Another Mark wasn't able to be there.
Wood Badge is advanced adult leader training for boy scouts. Participants in the course are divided into patrols like a large troop and the camp is named "Gilwell." Gillwell is the first boy scout camp in the world, located in England near Chingford, a short train ride from London. A friend gave it to Lord Baden-Powell and it is still used as a camp today. I have visited there several times. Ironically, I've never been to Baden-Powell's house that is right in London. Anyway, "Back to Gilwell" is the camp song, a simple ditty with clapping and hand movements that will drive you nuts. Unless of course, you're a wood badger.
I went to yoga today. It felt wonderful. I have not had a bad day this week. I am really working with my shoulders, arms and fingers, to get more flexibility in them. My hips and legs seem to be pretty good. Of course they could use a little more stretch, but my arms and hands need to get to zero. I have lost ground with them. I missed PT tuesday because I couldn't find a parking place. 20 minutes in the parking garage is 12 minutes more than I allow and there weren't any spots to be found. I was in a queue of about 12 cars who drove in and drove out.
In any case I have decided to not go to PT for a while and work with the yoga. Add a couple more classes and do some serious work here at home. I have the exercises and equipment from the PT department so I know what to do. And this way they won't have to think of new things for me.
I saw Dr. Ganguly at the clinic today. He is happy with my counts even though the platelets have dropped to 108. I have to pause and laugh. I'm fretting about 108. For 18 months my platelets were in the 6-15 range.
He says the drop is caused by graft vs. host. I am anxious for my hg to reach "normal," that is 12.0, but it stubbornly stays in the 11s.
I asked him about this graft vs. host. GVHD. What's the big picture here? Julie focused on the skin, Dr. Abhyankar on the inflammation, Abby on the pain. I need a big picture. So the big picture is: this is good. They would describe my symptoms as limited. Some thickening of the skin, some inflammation, some restricted movement. People who have limited GVHD don't get the disease again. (For this I am grateful.)
I have scar tissue everywhere. In my joints, in my organs, everywhere. I asked him if I should treat it like arthritis? He nodded. I said rheumatoid arthritis, he made a face and said "no, no, no, no. Old lady arthritis." ha ha. It will last for the forseeable future. Can it kill me? "NO." That was a good answer.
Things to do include all that I am doing. Cortizone cream, Aleve, Tylenol, Cellcept. Cellcept is an immune suppressant and I guess by suppressing the immune system it stifles the scar tissue factory or something. In any case I will keep taking it for a while.
Then they might order photo-apheresis. During this procedure my blood circulates through irradiation that "numbs" it (Ganguly's word.) This makes it settle down and quit making scar tissue. "Simmer down..." The photo-apheresis involves inserting a port in my chest that is under my skin. The procedure happens twice a week for several weeks, then gradually tapers off over a 6 month period. I'm hoping it is 10 days between treatments by the time I go to Italy. Or that the team does not order it for me.
Whether or not we do it depends on how much flexibility I can regain in my shoulders, wrists and fingers over the next month or so. Paraffin dips, stretches, pullies, spa baths. Lotsa energy going into this.
Meanwhile stay busy is my mantra. Housekeeping, working, errands. There is always something to do. The more active I am the better I feel. I am still catching up with friends I haven't seen since I was sick.
~Cathi
Anyway here we are. All checking in. Who is doing what in scouts? How is your troop, crew, pack? When are you going to camp and where? New district positions? Kids getting married? graduating from college? Life goes on. From left to right: John, Chris, Mark, AJ, me, Steve. Another Mark wasn't able to be there.
Wood Badge is advanced adult leader training for boy scouts. Participants in the course are divided into patrols like a large troop and the camp is named "Gilwell." Gillwell is the first boy scout camp in the world, located in England near Chingford, a short train ride from London. A friend gave it to Lord Baden-Powell and it is still used as a camp today. I have visited there several times. Ironically, I've never been to Baden-Powell's house that is right in London. Anyway, "Back to Gilwell" is the camp song, a simple ditty with clapping and hand movements that will drive you nuts. Unless of course, you're a wood badger.
I went to yoga today. It felt wonderful. I have not had a bad day this week. I am really working with my shoulders, arms and fingers, to get more flexibility in them. My hips and legs seem to be pretty good. Of course they could use a little more stretch, but my arms and hands need to get to zero. I have lost ground with them. I missed PT tuesday because I couldn't find a parking place. 20 minutes in the parking garage is 12 minutes more than I allow and there weren't any spots to be found. I was in a queue of about 12 cars who drove in and drove out.
In any case I have decided to not go to PT for a while and work with the yoga. Add a couple more classes and do some serious work here at home. I have the exercises and equipment from the PT department so I know what to do. And this way they won't have to think of new things for me.
I saw Dr. Ganguly at the clinic today. He is happy with my counts even though the platelets have dropped to 108. I have to pause and laugh. I'm fretting about 108. For 18 months my platelets were in the 6-15 range.
He says the drop is caused by graft vs. host. I am anxious for my hg to reach "normal," that is 12.0, but it stubbornly stays in the 11s.
I asked him about this graft vs. host. GVHD. What's the big picture here? Julie focused on the skin, Dr. Abhyankar on the inflammation, Abby on the pain. I need a big picture. So the big picture is: this is good. They would describe my symptoms as limited. Some thickening of the skin, some inflammation, some restricted movement. People who have limited GVHD don't get the disease again. (For this I am grateful.)
I have scar tissue everywhere. In my joints, in my organs, everywhere. I asked him if I should treat it like arthritis? He nodded. I said rheumatoid arthritis, he made a face and said "no, no, no, no. Old lady arthritis." ha ha. It will last for the forseeable future. Can it kill me? "NO." That was a good answer.
Things to do include all that I am doing. Cortizone cream, Aleve, Tylenol, Cellcept. Cellcept is an immune suppressant and I guess by suppressing the immune system it stifles the scar tissue factory or something. In any case I will keep taking it for a while.
Then they might order photo-apheresis. During this procedure my blood circulates through irradiation that "numbs" it (Ganguly's word.) This makes it settle down and quit making scar tissue. "Simmer down..." The photo-apheresis involves inserting a port in my chest that is under my skin. The procedure happens twice a week for several weeks, then gradually tapers off over a 6 month period. I'm hoping it is 10 days between treatments by the time I go to Italy. Or that the team does not order it for me.
Whether or not we do it depends on how much flexibility I can regain in my shoulders, wrists and fingers over the next month or so. Paraffin dips, stretches, pullies, spa baths. Lotsa energy going into this.
Meanwhile stay busy is my mantra. Housekeeping, working, errands. There is always something to do. The more active I am the better I feel. I am still catching up with friends I haven't seen since I was sick.
~Cathi
Saturday, June 5, 2010
Travel Tales
I have put off posting because I wanted to put up pictures and because every time I get ready to post something else happens. I'm feeling pretty good overall and getting my mojo back after a beating from the physical therapist.
I went to Washington DC for a wedding and to visit my cousin Nancy. I had a fantastic trip. The day of the wedding, in old town Alexandria at George Washington's River Farm was perfect in every way. For me it was a pain free day. I wore my dress shoes for hours and even danced. I danced as much as I wanted. I drank alcohol. As much as I wanted, which wasn't very much actually. The wedding was relatively small, permitting conversation with
just about everyone there which was wonderful. I had a gem of a conversation with a woman whose husband has had serious illness over the past 18 months but he was there, walking with a cane. We talked about the experience of dropping out of one's life suddenly, the fears, and how this kind of illness changes you. That little chat made the experience of the wedding even more precious.
Here's a pic of old friends who worked together at the Polsinelli law firm. Sally, on the far right, is the mother of the groom.
Nancy, a most wonderful host, collected me at the airport and we went directly to a salon for pedicures. After the wedding we had massages. Sunday we walked up to the capitol for the concert. Monday we went to a barbq and ate crabs. It's crab season back there an
d I had a lot of fun cracking them and eating them. A barbaric ritual that would have turned my doctors inside out had I tried to do it while my counts were still recovering. We visited the FDR Memorial which I had not seen and I liked it. This photo is in the 3rd term section, the war years. There are granite slabs every which way, both inside and outside the fountain. Very evocative of the disrupted countryside from bombs. Aside from these little adventures, we had fun walking the dog, walking to dinner, chatting. I'm a big fan of her beau who brought the Washington Post over to read every day.
On the way home as I was boarding the airplane the fellow in front of me dropped his sunglasses. Yours truly was able to bend down and pick them up and hand them back to him. Woo hoo! That is a lot of progress. Bending down to pick something up sometimes hurts so much that I don't bother. I really felt on top of the world as I made the trip home. Optimistic and confident and ready to do battle with my body.
I worked several hours each Wednesday and Thursday, then went to physical therapy Thursday afternoon. Thursday was not a good day. Everything hurt and nothing was moving very well. The PT insisted that we measure that day. I told her it was not a good day to measure because I was so sore and that tomorrow would be better. I guess she didn't believe me. She was mad because I hadn't been in for 3 weeks. And of course she was mad because the flexion (her term) in my arms and wrists was worse than when I started. She refused to count my last visit when we discovered that my shoulders were 30 degrees more flexible. She just wanted to be mean I guess. She must have been having a bad day too.
Anyway, that totally took the piss out of me. That the measurements were bad. That she didn't believe me when I said it was just a bad day. I cried and cried and cried. I fumed. I threatened to cancel the rest of the PT appointments. When I first went in there, she didn't understand GVHD and didn't understand what I explained to her. Now she has another patient so she's an expert. Said patient is making wonderful progress so obviously I am not doing my work at home. I know the other patient. I know her symptoms are about half what mine are. And I don't think the PT is now an expert.
She is a gov't employee, floating her gravy boat to retirement. She doesn't care about the individual, just her own numbers. Pfffft. I didn't cancel the appointments because the next two are with a different therapist. Nobody in there is very friendly, but maybe this one will be less overbearing. I had to think about where my canoe was. Beached. While I pouted. Took some mind work to get it back out in the stream.
Meanwhile yesterday was a good day. Today is a good day. I want to take my flat hand and smack that teutonic witch up the side of the head!
Mom had her last radiation on Thursday so we all met on the Plaza for lunch to celebrate. It is a wonderful feeling to beat cancer. To finish treatments.
I miss my friends at the clinic terribly but I am so happy being able to resume my life. The restaurant, Brio, was very accommodating and celebratory as well. Gave us complementary appetizer and then plates so we could eat BabyCakes for dessert.
When I returned home from Chicago I felt a little bit like when I used to travel for work. Get home, pay some bills, do the laundry, pack and leave again. My next door neighbor, Jack, has sent his grandson over to mow my yard twice. There is a special place for Jack in my heart. He is a champ. My neighbors across the street, Zach & Jen, have worked overtime collecting papers and mail for me. Mom & Dad have checked the post office box and made the bank deposits. All these things and I don't have dogs anymore!
I really missed Hayward Wednesday morning this week. It was raining hard when I got up. So hard that I just left the paper in the yard. HaHa. It's still not time for a dog or for gardening. My garden needs some serious work.
So there you go. My counts are holding steady. Hg was 11.8 a mere .4 away from normal, last week. The pain management is getting better. I have about one bad day a week, but I used to have about one good day a week so this is huge progress. I need to lose 5 pounds! gasp! Wally Time is over for me. I must pay attention to what I eat, and drink. Really, I don't drink alcohol much. Just occasionally.
We are scheduling the one year workup for July 6th because I have a liver biopsy scheduled for June 29th. THE DAY. One year from the date of my transplant. I'm thinking about a celebration.
~Cathi
I went to Washington DC for a wedding and to visit my cousin Nancy. I had a fantastic trip. The day of the wedding, in old town Alexandria at George Washington's River Farm was perfect in every way. For me it was a pain free day. I wore my dress shoes for hours and even danced. I danced as much as I wanted. I drank alcohol. As much as I wanted, which wasn't very much actually. The wedding was relatively small, permitting conversation with
just about everyone there which was wonderful. I had a gem of a conversation with a woman whose husband has had serious illness over the past 18 months but he was there, walking with a cane. We talked about the experience of dropping out of one's life suddenly, the fears, and how this kind of illness changes you. That little chat made the experience of the wedding even more precious.Here's a pic of old friends who worked together at the Polsinelli law firm. Sally, on the far right, is the mother of the groom.
Nancy, a most wonderful host, collected me at the airport and we went directly to a salon for pedicures. After the wedding we had massages. Sunday we walked up to the capitol for the concert. Monday we went to a barbq and ate crabs. It's crab season back there an
d I had a lot of fun cracking them and eating them. A barbaric ritual that would have turned my doctors inside out had I tried to do it while my counts were still recovering. We visited the FDR Memorial which I had not seen and I liked it. This photo is in the 3rd term section, the war years. There are granite slabs every which way, both inside and outside the fountain. Very evocative of the disrupted countryside from bombs. Aside from these little adventures, we had fun walking the dog, walking to dinner, chatting. I'm a big fan of her beau who brought the Washington Post over to read every day.On the way home as I was boarding the airplane the fellow in front of me dropped his sunglasses. Yours truly was able to bend down and pick them up and hand them back to him. Woo hoo! That is a lot of progress. Bending down to pick something up sometimes hurts so much that I don't bother. I really felt on top of the world as I made the trip home. Optimistic and confident and ready to do battle with my body.
I worked several hours each Wednesday and Thursday, then went to physical therapy Thursday afternoon. Thursday was not a good day. Everything hurt and nothing was moving very well. The PT insisted that we measure that day. I told her it was not a good day to measure because I was so sore and that tomorrow would be better. I guess she didn't believe me. She was mad because I hadn't been in for 3 weeks. And of course she was mad because the flexion (her term) in my arms and wrists was worse than when I started. She refused to count my last visit when we discovered that my shoulders were 30 degrees more flexible. She just wanted to be mean I guess. She must have been having a bad day too.
Anyway, that totally took the piss out of me. That the measurements were bad. That she didn't believe me when I said it was just a bad day. I cried and cried and cried. I fumed. I threatened to cancel the rest of the PT appointments. When I first went in there, she didn't understand GVHD and didn't understand what I explained to her. Now she has another patient so she's an expert. Said patient is making wonderful progress so obviously I am not doing my work at home. I know the other patient. I know her symptoms are about half what mine are. And I don't think the PT is now an expert.
She is a gov't employee, floating her gravy boat to retirement. She doesn't care about the individual, just her own numbers. Pfffft. I didn't cancel the appointments because the next two are with a different therapist. Nobody in there is very friendly, but maybe this one will be less overbearing. I had to think about where my canoe was. Beached. While I pouted. Took some mind work to get it back out in the stream.
Meanwhile yesterday was a good day. Today is a good day. I want to take my flat hand and smack that teutonic witch up the side of the head!
Mom had her last radiation on Thursday so we all met on the Plaza for lunch to celebrate. It is a wonderful feeling to beat cancer. To finish treatments.I miss my friends at the clinic terribly but I am so happy being able to resume my life. The restaurant, Brio, was very accommodating and celebratory as well. Gave us complementary appetizer and then plates so we could eat BabyCakes for dessert.
When I returned home from Chicago I felt a little bit like when I used to travel for work. Get home, pay some bills, do the laundry, pack and leave again. My next door neighbor, Jack, has sent his grandson over to mow my yard twice. There is a special place for Jack in my heart. He is a champ. My neighbors across the street, Zach & Jen, have worked overtime collecting papers and mail for me. Mom & Dad have checked the post office box and made the bank deposits. All these things and I don't have dogs anymore!
I really missed Hayward Wednesday morning this week. It was raining hard when I got up. So hard that I just left the paper in the yard. HaHa. It's still not time for a dog or for gardening. My garden needs some serious work.
So there you go. My counts are holding steady. Hg was 11.8 a mere .4 away from normal, last week. The pain management is getting better. I have about one bad day a week, but I used to have about one good day a week so this is huge progress. I need to lose 5 pounds! gasp! Wally Time is over for me. I must pay attention to what I eat, and drink. Really, I don't drink alcohol much. Just occasionally.
We are scheduling the one year workup for July 6th because I have a liver biopsy scheduled for June 29th. THE DAY. One year from the date of my transplant. I'm thinking about a celebration.
~Cathi
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