Thank you Robbie for the very descriptive word.
Gail writing again.
Mondayness. n. describes the feeling of overwhelm that arrives at the beginning of the week or accompanies any new venture.
That certainly describes today quite accurately.
Cathi put together a list of things she wanted to discuss with the medical team. When we arrived at the clinic today, the list came out and Cathi started looking for answers. When is the PET scan? When does the next round of Revlamid begin? Will there be another round of chemotherapy? Is there another Bone Marrow Biopsy schedules? Why is there still nausea even though chemo has been over for a couple of weeks? WHAT IS THE TREATMENT PLAN? IS there a treatment plan?
These questions have been accumulating for a while, but there has been such attention being paid to the day-to-day routine of "let's get through today first" that the questions have been pushed aside. Until now.
Neither the nurse practitioner nor the case coordinator had any real answers for Cathi. That lack of info has left Cathi in the dark about the future, creating a lot of anxiety. Since the beginning of the AML ordeal, there has always been a plan. The medical team knew what they were dealing with, what to do, when to do it. Chloroma is different. It is rare and it was not on anyone's radar to have a plan. Cathi was able to communicate her frustration very clearly today.
Cathi now has an appointment with Dr. McGuirk (the head of her medical team) on Tuesday early afternoon. She is expecting to get a lot of information about what the treatment for chloroma looks like. It might be good news. It might be bad news. But it will be more than what she has at this moment. Today, it is a distinct feeling of helplessness since she has no idea what any of the medical team has on the plan for the next steps.
She now has a plan to get a plan. It is a step forward.
There was positive news today with the blood work: the potassium is in the normal range. As is the platelets. Most of the other tests are either already at normal or very close to it. This is very good news - she did not have to have any IV supplements today and her next scheduled lab appointment is Wednesday.
The nausea is slowly abating and Cathi has been able to eat a lot more than just a few days ago. She lost nearly 30 pounds over the last few weeks. Time to get some meat back on those bones so I'm working at making appetizing food for her to eat. She likes eggs. I can cook eggs. She likes sherbet. I can scoop it into a bowl. She likes smoothies. I can work the blender. I hope she likes my cooking. (I'm kidding. I know how to use the microwave too.)
The pictures Cathi has been getting of her beautiful grand babies have been coming in regularly. Those are two incredibly adorable children, Harrison and Ella. They will be here to visit (with their parents Conor and Annie) in about 10 days. It is on the calendar in really big handwriting for Cathi to see and plan for.
Having plans is a very good thing.
Monday, August 16, 2010
Saturday, August 14, 2010
Eyes Wide Open
From Gail:
Today was more eventful than we thought it would be - all good - but it made for a very long day.
The "quick" stop for lab work at the Cancer Clinic (10:30 a.m. appointment) turned into a 3 hour visit. Cathi's potassium continues to stay JUST below the bottom of the normal range. So, they hooked her up to the IV pole for a mid-day boost. She also got platelets again. All the other counts are inching toward the normal ranges while the potassium and platelets are behaving as expected. Cathi goes back on Sunday morning - at 9 am or before - to get another dose of potassium. [Gail has learned an important lesson: do not anticipate the lab results. It might work for an office pool, but the reality is it's just like that box of chocolates - you don't know what you're going to get.]
The big accomplishment for the day is that Cathi stayed awake all day. Her first nap was around 5pm. Yesterday at the clinic we discussed with the nurse Cathi's lack of awake time. After reviewing the meds with the pharmacist, we learned that the anti-nausea med has an added benefit of causing drowsiness. The pharmacist suggested cutting the tablets in half and still getting an anti-nausea effect. BINGO. Wide awake almost all day while having fewer episodes of nausea. She is safely tucked into bed now.
Cathi's brother, Walt, stopped by this afternoon and installed a new phone jack in the kitchen, which is open to the family room where "Cathi's Chair" is located. The end of running to the front of the house to answer the phone. YEA!!
Thank you to all of you who have sent Cathi messages, texts, emails, and voice mails. It is helping Cathi get her mojo back with all the good wishes & love being sent to her. Keep sending that mojo!
Today was more eventful than we thought it would be - all good - but it made for a very long day.
The "quick" stop for lab work at the Cancer Clinic (10:30 a.m. appointment) turned into a 3 hour visit. Cathi's potassium continues to stay JUST below the bottom of the normal range. So, they hooked her up to the IV pole for a mid-day boost. She also got platelets again. All the other counts are inching toward the normal ranges while the potassium and platelets are behaving as expected. Cathi goes back on Sunday morning - at 9 am or before - to get another dose of potassium. [Gail has learned an important lesson: do not anticipate the lab results. It might work for an office pool, but the reality is it's just like that box of chocolates - you don't know what you're going to get.]
The big accomplishment for the day is that Cathi stayed awake all day. Her first nap was around 5pm. Yesterday at the clinic we discussed with the nurse Cathi's lack of awake time. After reviewing the meds with the pharmacist, we learned that the anti-nausea med has an added benefit of causing drowsiness. The pharmacist suggested cutting the tablets in half and still getting an anti-nausea effect. BINGO. Wide awake almost all day while having fewer episodes of nausea. She is safely tucked into bed now.
Cathi's brother, Walt, stopped by this afternoon and installed a new phone jack in the kitchen, which is open to the family room where "Cathi's Chair" is located. The end of running to the front of the house to answer the phone. YEA!!
Thank you to all of you who have sent Cathi messages, texts, emails, and voice mails. It is helping Cathi get her mojo back with all the good wishes & love being sent to her. Keep sending that mojo!
Friday, August 13, 2010
Being Perky
Cathi's cousin Gail here. No, I'm not perky and it's not a word I would use to describe Cathi most of the time. But, today she has perked up. She woke up this morning with a little tiny bounce in her step and that great big smile we know and love.
Last night we implemented the policy of "take a Tylenol if your fever is going up to see if it goes down" and, indeed it worked! It's a fabulous policy allowing a decent amount of sleep and no calls or visits to the med center.
This morning, after a breakfast of a huge bowl of pills that we have learned can be split and mashed into tiny bits - making them ever so slightly easier to get down - we dashed off to the clinic where Cathi finished up the last of the IV antibiotics and another round of potassium. The potassium takes . . . f o r e v e r . . . to drip through - it cannot be delivered quickly due to some medical reason that I am not grasping but know that if it could be delivered faster we would demand it. It was almost 4 pm by the time we got Cathi home.
The good news: WBC counts continue to rise. This is absolutely great since it shows that her bone marrow is working. The other counts that need to be higher are slowly rising as well. It doesn't always look like a lot from one day to the next, but when it's charted out it is obvious that Cathi is on an upward trend! It will be a slow climb, but it is most definitely climbing.
Cathi's not scheduled for any time in the clinic beds over the weekend. She has only a quick stop at the clinic on Saturday and Sunday for lab work to make sure that numbers are where they need to be. That means more time at home working on getting perkier. (Hopefully she will find that as amusing as I do. Seeing her laugh is such a treat.)
Love you so much my dear cousin!
Last night we implemented the policy of "take a Tylenol if your fever is going up to see if it goes down" and, indeed it worked! It's a fabulous policy allowing a decent amount of sleep and no calls or visits to the med center.
This morning, after a breakfast of a huge bowl of pills that we have learned can be split and mashed into tiny bits - making them ever so slightly easier to get down - we dashed off to the clinic where Cathi finished up the last of the IV antibiotics and another round of potassium. The potassium takes . . . f o r e v e r . . . to drip through - it cannot be delivered quickly due to some medical reason that I am not grasping but know that if it could be delivered faster we would demand it. It was almost 4 pm by the time we got Cathi home.
The good news: WBC counts continue to rise. This is absolutely great since it shows that her bone marrow is working. The other counts that need to be higher are slowly rising as well. It doesn't always look like a lot from one day to the next, but when it's charted out it is obvious that Cathi is on an upward trend! It will be a slow climb, but it is most definitely climbing.
Cathi's not scheduled for any time in the clinic beds over the weekend. She has only a quick stop at the clinic on Saturday and Sunday for lab work to make sure that numbers are where they need to be. That means more time at home working on getting perkier. (Hopefully she will find that as amusing as I do. Seeing her laugh is such a treat.)
Love you so much my dear cousin!
Tuesday, August 10, 2010
Crosswords puzzles and Disappointments
Well. Three days of steady improvement. Two days of no fevers. Time to go home. and then what?? A fever. Dang, I hate it when that happens. So Cathi is not going home today but the heavy duty antibiotics are dripping and the fever has broken and it will happen soon.
In the meantime, things are looking up. The blood counts are beginning to recover from the chemo, right on time. Thanks to the healthy marrow, Cathi's white count is now 1. The white count recovers first, so this is a celebrated happening around here! The general malaise that accompanies chemotherapy is receding, energy is gradually returning, color is improving and the tumors are all but gone. All great stuff.
The primary indicator of improvement has got to be the crossword puzzles. Even with what she describes as "chemo-brain," Cathi completed the NY Times crossword puzzle yesterday and is more than half done today. Those who have worked these puzzles (KC readers, they are in the sports section, NOT the comic pages) can attest to completion as a sign of progress! FYI, the Rap singer's road crew is called a posse.
Cathi's posse is still sister Janice, to be replaced by cousin Gail later this week. Stay tuned for further developments!
In the meantime, things are looking up. The blood counts are beginning to recover from the chemo, right on time. Thanks to the healthy marrow, Cathi's white count is now 1. The white count recovers first, so this is a celebrated happening around here! The general malaise that accompanies chemotherapy is receding, energy is gradually returning, color is improving and the tumors are all but gone. All great stuff.
The primary indicator of improvement has got to be the crossword puzzles. Even with what she describes as "chemo-brain," Cathi completed the NY Times crossword puzzle yesterday and is more than half done today. Those who have worked these puzzles (KC readers, they are in the sports section, NOT the comic pages) can attest to completion as a sign of progress! FYI, the Rap singer's road crew is called a posse.
Cathi's posse is still sister Janice, to be replaced by cousin Gail later this week. Stay tuned for further developments!
Sunday, August 8, 2010
WBC-check! Fevers-check! Next; Home, James??
from Cathi: What I have now is a type of leukemia that colonizes in tissue rather than blood or marrow, as usual. It's very unusual, called a chloroma, but it gets treated like leukemia.
Chemo to the edge, neutropenic diet, isolation while the counts are down and high hopes for when they come back up. The two tumors happen to be in my breasts and they are shrinking rapidly. I have been in and out of the hospital a lot though I am staying at home with a caregiver. I am in the hospital now while they try to figure out the cause for an unknown fever. The tumors are positive for 5q- and this is good. Chances are we won't have any big information till near the end of August.
At that time we will do another PET scan and decide next steps, which could include another round of chemo.
I apapreciate everyone's thoughts and prayers. Cathi
from sister Janice: After several days in the hospital we are anticipating getting sprung from here on Monday or Tuesday. Two days without fever, the docs tell Cathi, and one of those days is history now.
There is some speculation that the fevers, and some lung congestion, could have been caused by one of the arsenal of meds, Revlimid. This stuff is the big guns, the stuff that boosted the slipping graft into the winner's circle last winter, and is really important. Fortunately, it is taken in 21 day cycles, and this is break time.
The blood counts are recovering from the chemo, Cathi's energy is coming back, and the idea of going home is the main thing right now!
Chemo to the edge, neutropenic diet, isolation while the counts are down and high hopes for when they come back up. The two tumors happen to be in my breasts and they are shrinking rapidly. I have been in and out of the hospital a lot though I am staying at home with a caregiver. I am in the hospital now while they try to figure out the cause for an unknown fever. The tumors are positive for 5q- and this is good. Chances are we won't have any big information till near the end of August.
At that time we will do another PET scan and decide next steps, which could include another round of chemo.
I apapreciate everyone's thoughts and prayers. Cathi
from sister Janice: After several days in the hospital we are anticipating getting sprung from here on Monday or Tuesday. Two days without fever, the docs tell Cathi, and one of those days is history now.
There is some speculation that the fevers, and some lung congestion, could have been caused by one of the arsenal of meds, Revlimid. This stuff is the big guns, the stuff that boosted the slipping graft into the winner's circle last winter, and is really important. Fortunately, it is taken in 21 day cycles, and this is break time.
The blood counts are recovering from the chemo, Cathi's energy is coming back, and the idea of going home is the main thing right now!
Thursday, August 5, 2010
Almost like home
From the conversations and hellos in the hospital Cathi is almost a regular in the BMT ward. Monday at the clinic the blood pressure fell lower than the clinic staff was comfortable with so it was off to the hospital. This time in her own personal carriage. Not the best way to go, but none the less a deluxe ride. It comes with the frequent guest program.
This time it was to the other end of the BMT ward to room 4112. While they did not dance like the last time she arrived, the nurses all commented how nice it was to see her. The blood pressure came back up to the normal range for Cathi, which is lower than most people.
Platelets, blood, & potassium (oh my) are all almost a daily routine. There have been a few days where the food came up just as easy as it went down. After a few days the food is starting to stay down better, and the nausea might be starting to let up. This is all normal, unwelcomed, but normal as part of effects of chemo.
Janice and Walt have been keeping company with Cathi. Walt brings the paper in the morning and Janice spends most of the day with her, with occasional visits from Mom & Dad, and a few select guests. Yesterday's highlight was a close cut from Robin, and Cathi is sporting that GI Jane look that she wears so well. It was tough to see the hair go again, but all part of the regimen.
Tomorrow the highlight is the much not awaited to take another look and biopsy's from her lungs. Never a good experience for them to stick and prod down inside the lungs trying to figure out what is down there. But the fight is all out and tomorrow Cathi goes in to get her lungs looked and poked at. For all the times they have done that before the results have been minimal, but they keep at it until they find something. Remember that Cathi has the pneumonia causing fungus in her lungs that is a permanent resident. Only by using the right drugs can they keep the pneumonia brothers at bay. While there has been some fluid build up and slight pneumonia in the lungs, she is doing remarkably better than in the past.
Spirits for Cathi are not always high, but each time the door opens, a new nurse or aide pops in and a smile comes on her face and they catch up on what has been happening in the past year or six months. After they leave Cathi fills in the rest of the story from the events they were talking about when she was in almost a year ago.
This time it was to the other end of the BMT ward to room 4112. While they did not dance like the last time she arrived, the nurses all commented how nice it was to see her. The blood pressure came back up to the normal range for Cathi, which is lower than most people.
Platelets, blood, & potassium (oh my) are all almost a daily routine. There have been a few days where the food came up just as easy as it went down. After a few days the food is starting to stay down better, and the nausea might be starting to let up. This is all normal, unwelcomed, but normal as part of effects of chemo.
Janice and Walt have been keeping company with Cathi. Walt brings the paper in the morning and Janice spends most of the day with her, with occasional visits from Mom & Dad, and a few select guests. Yesterday's highlight was a close cut from Robin, and Cathi is sporting that GI Jane look that she wears so well. It was tough to see the hair go again, but all part of the regimen.
Tomorrow the highlight is the much not awaited to take another look and biopsy's from her lungs. Never a good experience for them to stick and prod down inside the lungs trying to figure out what is down there. But the fight is all out and tomorrow Cathi goes in to get her lungs looked and poked at. For all the times they have done that before the results have been minimal, but they keep at it until they find something. Remember that Cathi has the pneumonia causing fungus in her lungs that is a permanent resident. Only by using the right drugs can they keep the pneumonia brothers at bay. While there has been some fluid build up and slight pneumonia in the lungs, she is doing remarkably better than in the past.
Spirits for Cathi are not always high, but each time the door opens, a new nurse or aide pops in and a smile comes on her face and they catch up on what has been happening in the past year or six months. After they leave Cathi fills in the rest of the story from the events they were talking about when she was in almost a year ago.
Saturday, July 31, 2010
Still Home sorta
Spent thursday night in the hospital with a fever, getting loaded up with platelets and the inevitable potassium. Left the hospital to go straight to the clinic for more potassium I can't eat enough to get the potassium up and the oral medicine is hard on the gut, so more IVs.
I'm now getting 3 antibiotics at home via IV. The doctors think they are very clever "CDE" Caspofungin, Daptomycin, Ertapenum.
The full effects of the chemo are kicking in. I'm losing my sense of taste, spending a lot of time sleeping, and not very witty when I'm awake. My sister Janice is here for the next two weeks and it will be nice to have that consistency though everyone has been very generous about stepping in and staying with me.
Hopefully I'm about halfway through the low spot and can get across the other half with no mishaps.
Walt has done a fine job updating the blog and you will probably hear more from him.
I'm now getting 3 antibiotics at home via IV. The doctors think they are very clever "CDE" Caspofungin, Daptomycin, Ertapenum.
The full effects of the chemo are kicking in. I'm losing my sense of taste, spending a lot of time sleeping, and not very witty when I'm awake. My sister Janice is here for the next two weeks and it will be nice to have that consistency though everyone has been very generous about stepping in and staying with me.
Hopefully I'm about halfway through the low spot and can get across the other half with no mishaps.
Walt has done a fine job updating the blog and you will probably hear more from him.
Wednesday, July 28, 2010
There's no place like home
Cathi woke with a spring in her step and the wind on her back on Wednesday. This could only mean one thing - home again.
After more lasix and subsequent loss of fluids, the oxygen came off and she was walking laps. Since the fevers were also gone, she was allowed to come home. She is back in her house, keeping a low guest list and resting and recuperating.
After more lasix and subsequent loss of fluids, the oxygen came off and she was walking laps. Since the fevers were also gone, she was allowed to come home. She is back in her house, keeping a low guest list and resting and recuperating.
Tuesday, July 27, 2010
A Day Hanging with my girl Robin
Today finds Cathi still in the hospital hanging with her pal Robin. Robin was the nurse that was there in room 4101 when Cathi checked into the hospital back when this all started on July 11, of 2008. (Now better known as 2000 Late). So Robin is there to say hi and help Cathi through the days. Robin is such a great nurse with a presence that just fills a room with smiles. Great to have such help.
The fevers have come down and Dr Ganguly says, 'You had an infection, and we have fixed that.' Her esophagus is also healing and she will start soft food again. So this good progress and Dr Ganguly is always quick to point out that "We have fixed this to."
But now he is not committing time to go home and is keeping her in the hospital because of her lungs. There is some noise from fluid in the lungs. A CAT scan was ordered to look at the tissue in her chest to see the progress from the Chemotherapy and also to look at her lungs.
No news on when Cathi will be getting to go home, but every morning the question is asked 'When can I go home?'
The fevers have come down and Dr Ganguly says, 'You had an infection, and we have fixed that.' Her esophagus is also healing and she will start soft food again. So this good progress and Dr Ganguly is always quick to point out that "We have fixed this to."
But now he is not committing time to go home and is keeping her in the hospital because of her lungs. There is some noise from fluid in the lungs. A CAT scan was ordered to look at the tissue in her chest to see the progress from the Chemotherapy and also to look at her lungs.
No news on when Cathi will be getting to go home, but every morning the question is asked 'When can I go home?'
Sunday, July 25, 2010
Another Day, Another plan
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.
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.
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
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