Well, hallelujah!
Got all sorts of good news at the clinic today.
First off, I haven't forgotten how to use a wheelchair (I know, that's a little sick but it's the most exercise I've had in quite awhile). We got to the clinic and I used one of their chairs rather than trying to hobble around on crutches (my foot's pretty swollen and painful).
They had a little trouble drawing blood from the 6 week old catheter but the phlebotomist (blood tech) was patient and knew what she was doing, eventually coaxing 8 tubes of blood out of it.
After the time in the lab, we went to see the doc. When asked how I was doing, I said I'd be doing jumping jacks except for this stupid foot thing. (I am feeling so much stronger than yesterday) She had me take the shoe off and even I was surprised at how swollen it was. We talked about it a little and, once she was assured that it's a chronic problem with nothing to do with the transplant, asked what I usually do for it.
Usually, it's Aleve, ice and elevation. She chimed in with, "and we won't let you take anti-inflammatories". Then the first of the really good news, "your platelet count is high enough for you to take Aleve". It's amazing what becomes worth rejoicing over at different times of our lives.
Then she got to the results from Friday. The blood cultures and nasal swab had come back negative. No RSV, no fungus, no nothing. She listened to my lungs and the crackles (indicating possible fluid in them) that were noticed Friday are gone. Lungs, heart, etc all sounded good.
Before leaving, we made another appointment for Friday. For this one, they'll draw some more blood for tests. I'll see Dr. Kauffman, to talk about the whole experience and future plans. Then I'll go to Interventional Radiology...WHERE THEY'LL REMOVE MY CATHETER!
Got home and took the Aleve and iced things down. I still can't put weight on it but am willing to bet that there'll be real improvement by this time tomorrow.
A few days ago, Alice began an effort to fatten me up. She's got me eating three meals a day now...I think. I feel stronger. I'm looking forward to being able to move around and get over the last of this. Alice should be returning to her job next week, and I'd darn well better be lots more independent than I have been. It will be quite a change for both of us.
As always, thank you for caring enough to keep up with this adventure.
Jerry
Monday, December 31, 2007
Sunday, December 30, 2007
Since getting home
Well, I've been home for just about a week now...and realized I haven't entered anything since getting here.
Note that this is mostly a recap of bad stuff...as I try to understand what's been going on.
I started thinking why that was. There's lots of conflicting thoughts running around in my brain. When I first got to the hospital, I still felt pretty good and was blogging often. Even the worst days pre-RSV weren't bad. I was still on the Bone Marrow Transplant (BMT) ward, 7E, and everyone was incredible.
Once I got the RSV, I was moved elsewhere, spending 6 hours every day under a tent and unable to leave the room unless I was going for some x-ray or ct scan...and would then need to wear this horrible NIOSH N95 face mask. During that time, I was also cut off from a reliable wi-fi connection.
Now here I am, with all the comforts of home (literally) and I should be shouting from the rooftops how great it feels to be here. It really does.
So what's different? Health-wise, I don't feel better than I did. More importantly, I feel like a burden (Alice doesn't feel this...and will be mad that I put it in here). I've never been good at being dependent. I'm normally able to do whatever I need by myself. However, since being home, I am so dependent on Alice. More than that, she's already got her own pain but needs to do all my usual chores plus her own.
We've enjoyed cooking together almost as long as we've been together; now I get to sit in my recliner and watch. On top of that, Alice has always enjoyed watching me eat. I usually have a big appetite and am told I obviously enjoy whatever I'm eating. These days, one of my portions can easily feed both of us...and I'm only eating two real meals each day, unless you count my daily portion of ice cream and cake. :-)
Since being home, I've had more upper/lower GI "distress" than during the month in the hospital. I'm frequently short of breath and am using an inhaler to help my breathing. 4-5 laps around the inside of the house has me out of breath.
The Friday trip to the clinic sounded positive except that I discovered that I'd had a staph infection along with the RSV. Also, they were concerned about pneumonia, a not uncommon result of the RSV. I seem to have the signs of an oral fungus as well as the possibility of another bacterial infection. I received a few pills for the fungus and some IV anti-bacterial. Also, I was given a prescription for some anti-pneumonia medication.
Spending a few hours in regular shoes Friday has brought about an old foot problem. Having nothing to do with the Amyloidosis, it feels like some sort of sneak attack. The laps around the house, necessary if I ever want to rebuild my strength, have stopped. Seriously painful, I can't take the usual anti-inflammatories to control it. Ice and elevation are about it...and they're not helping fast enough. My trip to the clinic tomorrow may very well be on crutches.
As you can see, the list goes on and on.
However, I'm alive and will in time return to normal. I know this. Having written all this down has helped to bring this all back into focus. I realize it'd be perfectly normal to be suffering some depression. So it's all normal and to be expected. Too bad I set such high expectations when all this began.
So, enough rambling...it has done me lots of good and, if you've read this far, thank you for taking the time.
Also, thank you to everyone who's called, sent cards, offered to help with chores, and all the other wonderful things you've done.
Jerry
Note that this is mostly a recap of bad stuff...as I try to understand what's been going on.
I started thinking why that was. There's lots of conflicting thoughts running around in my brain. When I first got to the hospital, I still felt pretty good and was blogging often. Even the worst days pre-RSV weren't bad. I was still on the Bone Marrow Transplant (BMT) ward, 7E, and everyone was incredible.
Once I got the RSV, I was moved elsewhere, spending 6 hours every day under a tent and unable to leave the room unless I was going for some x-ray or ct scan...and would then need to wear this horrible NIOSH N95 face mask. During that time, I was also cut off from a reliable wi-fi connection.
Now here I am, with all the comforts of home (literally) and I should be shouting from the rooftops how great it feels to be here. It really does.
So what's different? Health-wise, I don't feel better than I did. More importantly, I feel like a burden (Alice doesn't feel this...and will be mad that I put it in here). I've never been good at being dependent. I'm normally able to do whatever I need by myself. However, since being home, I am so dependent on Alice. More than that, she's already got her own pain but needs to do all my usual chores plus her own.
We've enjoyed cooking together almost as long as we've been together; now I get to sit in my recliner and watch. On top of that, Alice has always enjoyed watching me eat. I usually have a big appetite and am told I obviously enjoy whatever I'm eating. These days, one of my portions can easily feed both of us...and I'm only eating two real meals each day, unless you count my daily portion of ice cream and cake. :-)
Since being home, I've had more upper/lower GI "distress" than during the month in the hospital. I'm frequently short of breath and am using an inhaler to help my breathing. 4-5 laps around the inside of the house has me out of breath.
The Friday trip to the clinic sounded positive except that I discovered that I'd had a staph infection along with the RSV. Also, they were concerned about pneumonia, a not uncommon result of the RSV. I seem to have the signs of an oral fungus as well as the possibility of another bacterial infection. I received a few pills for the fungus and some IV anti-bacterial. Also, I was given a prescription for some anti-pneumonia medication.
Spending a few hours in regular shoes Friday has brought about an old foot problem. Having nothing to do with the Amyloidosis, it feels like some sort of sneak attack. The laps around the house, necessary if I ever want to rebuild my strength, have stopped. Seriously painful, I can't take the usual anti-inflammatories to control it. Ice and elevation are about it...and they're not helping fast enough. My trip to the clinic tomorrow may very well be on crutches.
As you can see, the list goes on and on.
However, I'm alive and will in time return to normal. I know this. Having written all this down has helped to bring this all back into focus. I realize it'd be perfectly normal to be suffering some depression. So it's all normal and to be expected. Too bad I set such high expectations when all this began.
So, enough rambling...it has done me lots of good and, if you've read this far, thank you for taking the time.
Also, thank you to everyone who's called, sent cards, offered to help with chores, and all the other wonderful things you've done.
Jerry
Friday, December 28, 2007
Trip to the clinic
Today, Jerry was outside of the house for the first time since he came home from the hospital late on the 23rd. It was time to go to the clinic for his first checkup.
For hospital time, it really passed quite quickly. We started at the lab where they drew some blood for a variety of tests. Then we went to see the doctor. We met yet another doc, Ken Prince, who was quite pleasant and very thorough. Because of Jerry's noisy chest, he prescribed a couple of medications, one oral, one intravenous, so off we went to the infusion center. (In fairness, I should mention that all of these offices are close to each other and on the same floor of the Winship Cancer Institute.)
While Jerry was getting his iv meds, I went off in search of lunch. There is a small cafe on the first floor where I got a sandwich for me and some chicken noodle soup for Jerry. Almost like a picnic, except for all the nurses and the iv, etc. ;-)
We had a couple of quick stops on the way home (drop off movies, have prescription filled, pick up snack type foods) and managed to get home in the middle of a rather nice rain storm, perfect weather for a nice nap, which we both promptly took advantage of.
Unfortunately, Jerry is having an adverse reaction to our outing (maybe the soup) and has been suffering some nausea. Thankfully, he's not suffered from that very often, but it is one of the side effects of the chemo. His appetite is still way down, but he has been eating regularly, until now. I'm sure this too will pass.
Tomorrow, I have to go into the office to cover our Saturday hours, thankfully a short day. I will be asking a couple of our neighbors who have offered their help to be "on call" should Jerry need anything. He's a pretty low maintenance patient and is capable of taking care of himself, just needs a bit of a hand now and then. Still, it will be very strange for me to focus on business after focusing so completely on him for the past week! Hope I remember how to do my job!
I'm hoping Jerry will blog later and fill in all the gaps. For now, I am going to search for something he might consider eating.
Cheers!
For hospital time, it really passed quite quickly. We started at the lab where they drew some blood for a variety of tests. Then we went to see the doctor. We met yet another doc, Ken Prince, who was quite pleasant and very thorough. Because of Jerry's noisy chest, he prescribed a couple of medications, one oral, one intravenous, so off we went to the infusion center. (In fairness, I should mention that all of these offices are close to each other and on the same floor of the Winship Cancer Institute.)
While Jerry was getting his iv meds, I went off in search of lunch. There is a small cafe on the first floor where I got a sandwich for me and some chicken noodle soup for Jerry. Almost like a picnic, except for all the nurses and the iv, etc. ;-)
We had a couple of quick stops on the way home (drop off movies, have prescription filled, pick up snack type foods) and managed to get home in the middle of a rather nice rain storm, perfect weather for a nice nap, which we both promptly took advantage of.
Unfortunately, Jerry is having an adverse reaction to our outing (maybe the soup) and has been suffering some nausea. Thankfully, he's not suffered from that very often, but it is one of the side effects of the chemo. His appetite is still way down, but he has been eating regularly, until now. I'm sure this too will pass.
Tomorrow, I have to go into the office to cover our Saturday hours, thankfully a short day. I will be asking a couple of our neighbors who have offered their help to be "on call" should Jerry need anything. He's a pretty low maintenance patient and is capable of taking care of himself, just needs a bit of a hand now and then. Still, it will be very strange for me to focus on business after focusing so completely on him for the past week! Hope I remember how to do my job!
I'm hoping Jerry will blog later and fill in all the gaps. For now, I am going to search for something he might consider eating.
Cheers!
Tuesday, December 25, 2007
First full day home
Jerry's first full day home started out quite well. He said he'd slept well and that he was hungry - a great sign!
As the morning progressed, his coughing kept getting worse. He'd barely catch his breath from one bout before another began. He wasn't running a fever, but his temperature was up. We finally decided it was time to call the doc.
Dr. Kaufman prescribed an inhalant which he promptly called in and I promptly left to get. We are very fortunate to have a terrific pharmacist, Scott, and his wonderful staff. They consistently provide us professional service while showing just how much they care. I hope they understand just how much we appreciate them, especially in this particular medical adventure. The inhalant seems to have helped some, though we did have a rocky evening. Jerry wasn't the least bit hungry but was willing to have an Ensure.
For the rest of the world, this is Christmas morning and we wish each and everyone of you the merriest of Christmas. For us, it's the next day of our challenge to rebuild Jerry's strength. I am kind of a nut about Christmas, but I've found it necessary over the years to be quite flexible about the exact date due to the challenge of having family scattered all over the country. I know we will celebrate this holiday with some of the traditional fanfare (food, gifts, etc.) eventually, but for today we are celebrating what we see as the core message of the holiday: love.
I can honestly say that I love Jerry more today than ever and I see that love shining back at me from his eyes. We are blessed with loving family members who continue to boost our spirits from all across the country. We are deeply grateful to our friends, both in town and out of town, who have shown us love in many forms, especially over the past couple of months. In all the ways that truly matter, this is our best Christmas yet.
With love and deep gratitude, Merry Christmas and Happy New Year!
As the morning progressed, his coughing kept getting worse. He'd barely catch his breath from one bout before another began. He wasn't running a fever, but his temperature was up. We finally decided it was time to call the doc.
Dr. Kaufman prescribed an inhalant which he promptly called in and I promptly left to get. We are very fortunate to have a terrific pharmacist, Scott, and his wonderful staff. They consistently provide us professional service while showing just how much they care. I hope they understand just how much we appreciate them, especially in this particular medical adventure. The inhalant seems to have helped some, though we did have a rocky evening. Jerry wasn't the least bit hungry but was willing to have an Ensure.
For the rest of the world, this is Christmas morning and we wish each and everyone of you the merriest of Christmas. For us, it's the next day of our challenge to rebuild Jerry's strength. I am kind of a nut about Christmas, but I've found it necessary over the years to be quite flexible about the exact date due to the challenge of having family scattered all over the country. I know we will celebrate this holiday with some of the traditional fanfare (food, gifts, etc.) eventually, but for today we are celebrating what we see as the core message of the holiday: love.
I can honestly say that I love Jerry more today than ever and I see that love shining back at me from his eyes. We are blessed with loving family members who continue to boost our spirits from all across the country. We are deeply grateful to our friends, both in town and out of town, who have shown us love in many forms, especially over the past couple of months. In all the ways that truly matter, this is our best Christmas yet.
With love and deep gratitude, Merry Christmas and Happy New Year!
Sunday, December 23, 2007
Safe and sound
Finally home, safe and sound.
Now the real work begins. For the past two weeks, Jerry has been confined to a small room and found simply crossing the room to the bathroom to be tough. Now we begin the process of rebuilding his strength. I'll do the bullying, he'll do the physical work.
We have to start slow because the doc said he was not to do anything strenuous. He is not allowed to raise his heart rate. Guess that means I need to keep my distance. ;-)
For those of you nearby, I may be calling on you for help, mostly simple things. I find it difficult to take the recycles to the curb, or carry in all the groceries, particularly the bottled water.
If you are feeling well, please call and maybe come by for a visit. I know Jerry is nuts about me, but, aside from medical personnel and two visits while at the hospital, I'm the only human he's interacted with for the past 4 weeks. We need fresh blood, so to speak!
I have an especially dear friend, Lisa, who has been a constant help to me throughout Jerry's time in the hospital. She even came over before we got home from the hospital to help me by throwing some bedding in the dryer! I am very, very blessed to have her as my friend - and she is an incredible hair dresser and handy ann! I feel deeply grateful to have such a caring friend!
Now, with him home and on the mend, I will have the best Christmas ever!
Now the real work begins. For the past two weeks, Jerry has been confined to a small room and found simply crossing the room to the bathroom to be tough. Now we begin the process of rebuilding his strength. I'll do the bullying, he'll do the physical work.
We have to start slow because the doc said he was not to do anything strenuous. He is not allowed to raise his heart rate. Guess that means I need to keep my distance. ;-)
For those of you nearby, I may be calling on you for help, mostly simple things. I find it difficult to take the recycles to the curb, or carry in all the groceries, particularly the bottled water.
If you are feeling well, please call and maybe come by for a visit. I know Jerry is nuts about me, but, aside from medical personnel and two visits while at the hospital, I'm the only human he's interacted with for the past 4 weeks. We need fresh blood, so to speak!
I have an especially dear friend, Lisa, who has been a constant help to me throughout Jerry's time in the hospital. She even came over before we got home from the hospital to help me by throwing some bedding in the dryer! I am very, very blessed to have her as my friend - and she is an incredible hair dresser and handy ann! I feel deeply grateful to have such a caring friend!
Now, with him home and on the mend, I will have the best Christmas ever!
I'm going home!!!!!!!!
Dr. Kauffman just walked out the door after giving us the wonderful news. We're going home! He's now filling out the official paperwork and, when he's done, we're outta here. One of us will add more info later.
Saturday, December 22, 2007
Musical Chairs...or rooms
Okay, it's now about 10pm on Sat., Dec. 22nd.
I was up and in the shower early this morning, figuring I could get it out of the way before the treatments and all the other stuff started. Unfortunately, they didn't tell me that they were starting the treatment later than usual...possibly so they could get the nasal culture back. The first treatment was pretty uneventful...no test results yet.
The second treatment started around 3:30. About 10 minutes into it, Dr Kauffman* walks into my room...this is a major no-no. During the treatments, nobody is allowed in there due to possible side effects. Anyway, he comes in to tell me that the cultures were back and, although still positive, much better than before. He then said if I can avoid any fever tonight and if I continue to look and sound better, then I can go home tomorrow! I'm not getting my hopes up...we've been this close before.
About 15 minutes after his trip to see me, Dr Kauffman came back again. This time telling me that I'm moving again. The good thing about this move is I've got better wi-fi, no more dialup. The bad thing is the room is smaller and has a traction apparatus above me. Instead of a pair of big corner windows in the first room and a single large window on the ground floor, this one is about 3 feet wide but angled in such a way that I can't see anything.
Some of the nurses asked if he really came into the room? Yup...they couldn't believe it.
I'm not exactly sure of my room number...the door says G534 but the note on the whiteboard says G533. BTW, they have me listed as Gerald Lipsky. The phone number should be 404-7122-3533 or -7534. However, during the tent treatments, I don't answer any phone...it's hard to talk through the mask.
*who you might recall was my first Emory doctor. When I came to the hospital, I was seen by Dr. Lonial and then Dr. Lechowicz...they each do a 2 week stint here at the hospital. Now it's come full circle and I'm Dr. Kauffman's patient.
I was up and in the shower early this morning, figuring I could get it out of the way before the treatments and all the other stuff started. Unfortunately, they didn't tell me that they were starting the treatment later than usual...possibly so they could get the nasal culture back. The first treatment was pretty uneventful...no test results yet.
The second treatment started around 3:30. About 10 minutes into it, Dr Kauffman* walks into my room...this is a major no-no. During the treatments, nobody is allowed in there due to possible side effects. Anyway, he comes in to tell me that the cultures were back and, although still positive, much better than before. He then said if I can avoid any fever tonight and if I continue to look and sound better, then I can go home tomorrow! I'm not getting my hopes up...we've been this close before.
About 15 minutes after his trip to see me, Dr Kauffman came back again. This time telling me that I'm moving again. The good thing about this move is I've got better wi-fi, no more dialup. The bad thing is the room is smaller and has a traction apparatus above me. Instead of a pair of big corner windows in the first room and a single large window on the ground floor, this one is about 3 feet wide but angled in such a way that I can't see anything.
Some of the nurses asked if he really came into the room? Yup...they couldn't believe it.
I'm not exactly sure of my room number...the door says G534 but the note on the whiteboard says G533. BTW, they have me listed as Gerald Lipsky. The phone number should be 404-7122-3533 or -7534. However, during the tent treatments, I don't answer any phone...it's hard to talk through the mask.
*who you might recall was my first Emory doctor. When I came to the hospital, I was seen by Dr. Lonial and then Dr. Lechowicz...they each do a 2 week stint here at the hospital. Now it's come full circle and I'm Dr. Kauffman's patient.
Friday, December 21, 2007
Embarrassment
Okay, I'm a computer geek..have been one for many years. Guess who got me back online? Yup...Alice did it.
When I'm discussing work, she often asks a question from an angle that I wouldn't consider. Her question usually points me to a new way of looking at the problem...giving me a nice clean solution. This time, she asked a very simple question:
When I'm discussing work, she often asks a question from an angle that I wouldn't consider. Her question usually points me to a new way of looking at the problem...giving me a nice clean solution. This time, she asked a very simple question:
Don't you have a dialup modem in your laptop?
The answer was 'Duh!' I called a coworker who got me the phone number and I was up and running, albeit at old-fashioned dialup speeds. But hey, it works.
So what's been going 0n? Not a lot. Blood tests, CT scans of sinii (sinuses) and chest, x-rays, etc, etc. As Alice mentioned, we had a major letdown earlier this week. We were told I was going home, just waiting for the official discharge papers. A little while later, they recanted. The culture had come back positive and I was going to have another series of the tent treatments.
I can deal with everything they throw at me, except for these treatments. They screw up my entire day. If it weren't for them, I could justify the extra time here because the longer I'm here, the easier it will be for Alice once I'm home. Apparently, my numbers are good enough for me to go to a restaurant with no mask on...as long as it's not really crowded.
Alice mentioned two of the angels here; there're several more. Vani is special, asking the doct0r questions any time she sees something unusual. After spending a day waiting for a nasal culture, she took the initiative to ask the doc if she should get one. There have been so many nurses, some very good, some not so good...but this is only from my perspective.
So, bottom line is I'm back on and will, hopefully, be able to keep the blog more up-to-date.
So what's been going 0n? Not a lot. Blood tests, CT scans of sinii (sinuses) and chest, x-rays, etc, etc. As Alice mentioned, we had a major letdown earlier this week. We were told I was going home, just waiting for the official discharge papers. A little while later, they recanted. The culture had come back positive and I was going to have another series of the tent treatments.
I can deal with everything they throw at me, except for these treatments. They screw up my entire day. If it weren't for them, I could justify the extra time here because the longer I'm here, the easier it will be for Alice once I'm home. Apparently, my numbers are good enough for me to go to a restaurant with no mask on...as long as it's not really crowded.
Alice mentioned two of the angels here; there're several more. Vani is special, asking the doct0r questions any time she sees something unusual. After spending a day waiting for a nasal culture, she took the initiative to ask the doc if she should get one. There have been so many nurses, some very good, some not so good...but this is only from my perspective.
So, bottom line is I'm back on and will, hopefully, be able to keep the blog more up-to-date.
And the wait goes on
Our slight set back is growing quite tiresome, mostly for Jerry. The treatment for this nasty RSV is two 3 hour stints alone in his room with this ghastly mask on inhaling this riboviron that is supposed to kill the virus. His spirit has taken a beating, but he's a champ and he keeps bouncing back.
I am learning the odd realities of hospital time. When we've been told 5 or 10 minutes, it's never been less than half an hour. When they say half an hour, bet on at least a full hour. "Coming right down" to get Jerry for tests is typically "sometime" within the hour, if we're lucky. I realize that Jerry is not the only patient (though of course he's the most important one!) but it amazes me that anything manages to get done on hospital time.
We've met quite a number of terrific nurses, but there are two who have proven to be true angels: Ida and Carrie. Ida works on 7E, the bone marrow transplant ward. She has come down to visit Jerry several times on her break or on the shift change since he was moved. She brightens his spirit just by showing how she truly cares. Carrie works on the ward where Jerry is currently staying. She is unfailingly pleasant and cheerful and has consistently been promptly responsive to any requests we've made. She has paged people to make sure they respond during the time windows between Jerry's tent treatments and always follows up to make certain the people who need to show up do so. We both feel so well cared for when she is there.
When I go back this evening, I am going to attempt to get Jerry back on line by using old fashioned phone line. He really does need his window into the world. Let's hope it works!
I deeply appreciate the notes and phone calls. Sometimes it can feel like I'm trying to take care of Jerry all alone, but you wonderful friends have perfect timing and reach out just when I/we need it most.
We need 36 hours without a fever to bring Jerry home. He had a fever today around 2; let's hope that is the last one!
I am learning the odd realities of hospital time. When we've been told 5 or 10 minutes, it's never been less than half an hour. When they say half an hour, bet on at least a full hour. "Coming right down" to get Jerry for tests is typically "sometime" within the hour, if we're lucky. I realize that Jerry is not the only patient (though of course he's the most important one!) but it amazes me that anything manages to get done on hospital time.
We've met quite a number of terrific nurses, but there are two who have proven to be true angels: Ida and Carrie. Ida works on 7E, the bone marrow transplant ward. She has come down to visit Jerry several times on her break or on the shift change since he was moved. She brightens his spirit just by showing how she truly cares. Carrie works on the ward where Jerry is currently staying. She is unfailingly pleasant and cheerful and has consistently been promptly responsive to any requests we've made. She has paged people to make sure they respond during the time windows between Jerry's tent treatments and always follows up to make certain the people who need to show up do so. We both feel so well cared for when she is there.
When I go back this evening, I am going to attempt to get Jerry back on line by using old fashioned phone line. He really does need his window into the world. Let's hope it works!
I deeply appreciate the notes and phone calls. Sometimes it can feel like I'm trying to take care of Jerry all alone, but you wonderful friends have perfect timing and reach out just when I/we need it most.
We need 36 hours without a fever to bring Jerry home. He had a fever today around 2; let's hope that is the last one!
Wednesday, December 19, 2007
Slight setback
I thought I would be bringing Jerry home tonight or tomorrow at the latest. However, this nasty childhood RSV virus (I recognize my redundancy) hasn't quite finished with him yet. It's so darned frustrating!! As of earlier today, he will require two more days of treatment, but we're still not certain if that means he comes home after another two days or what.
I have decided to begin my Family Medical Leave because I cannot seem to be there when the doc is, so I'm going to basically camp out at the hospital all day asking lots and lots of questions. I am not limited to just one room, like Jerry is, so I can wander and find new people to ask my questions.
The folks at Emory are terrific, but just like the rest of us, they have their own language and don't always remember to translate for the regular folk. I intend to have them translate until I fully understand.
I'm off to spend some quiet time with my handsome husband!
I have decided to begin my Family Medical Leave because I cannot seem to be there when the doc is, so I'm going to basically camp out at the hospital all day asking lots and lots of questions. I am not limited to just one room, like Jerry is, so I can wander and find new people to ask my questions.
The folks at Emory are terrific, but just like the rest of us, they have their own language and don't always remember to translate for the regular folk. I intend to have them translate until I fully understand.
I'm off to spend some quiet time with my handsome husband!
Monday, December 17, 2007
Communication glitch
Dearest family, friends and other interested parties, Jerry has asked me to let you know that due to the inconsistent signal from his new room, he is not able to update this blog at this time. Which also means, I'm sorry to say, his picture won't be posted until he's home again.
The good news is, he may be home as soon as Wednesday!! I'm trying not to get my hopes up too high because I don't want to experience that nasty pain of disappointment.
Jerry pointed out to me today that I haven't been blogging about how I am doing. I told him that how he is progessing is much more interesting, but he gave me one of those looks, so I'll try to share how it is from my side of the room.
Mostly, I'm grateful, but tired. I am deeply grateful that we found this early, that Jerry was in such awesome shape and especially for all the prayers and thoughts sent our way. I'm grateful that he seems to be responding well and that the nursing staff all seem to like him so they take especially great care of him.
I'm tired because I've been operating outside of my normal routine for a while now and that seems to take more energy.
I am tired of Emory Hospital, even though I am grateful for all the terrific care they have given and are giving my husband. It's still a hospital and not the cheeriest place to be. I'm tired of doing the grocery shopping! Jerry has always been the better shopper (he reads labels and compares prices) so I gladly agreed to his handling that.
Most of all, I'm tired of not being able to kiss my sweet, handsome husband and of not being able to sleep with him. This new room doesn't even offer a comfortable chair to try to sleep in! No more pajama parties!
Happily, my gratitude far out weighs my exhaustion! It is what keeps me going and keeps me smiling.
We'll be sure to post when Jerry will be leaving the hospital, then he will catch up on his side of the story.
Thank you for listening and for caring!
The good news is, he may be home as soon as Wednesday!! I'm trying not to get my hopes up too high because I don't want to experience that nasty pain of disappointment.
Jerry pointed out to me today that I haven't been blogging about how I am doing. I told him that how he is progessing is much more interesting, but he gave me one of those looks, so I'll try to share how it is from my side of the room.
Mostly, I'm grateful, but tired. I am deeply grateful that we found this early, that Jerry was in such awesome shape and especially for all the prayers and thoughts sent our way. I'm grateful that he seems to be responding well and that the nursing staff all seem to like him so they take especially great care of him.
I'm tired because I've been operating outside of my normal routine for a while now and that seems to take more energy.
I am tired of Emory Hospital, even though I am grateful for all the terrific care they have given and are giving my husband. It's still a hospital and not the cheeriest place to be. I'm tired of doing the grocery shopping! Jerry has always been the better shopper (he reads labels and compares prices) so I gladly agreed to his handling that.
Most of all, I'm tired of not being able to kiss my sweet, handsome husband and of not being able to sleep with him. This new room doesn't even offer a comfortable chair to try to sleep in! No more pajama parties!
Happily, my gratitude far out weighs my exhaustion! It is what keeps me going and keeps me smiling.
We'll be sure to post when Jerry will be leaving the hospital, then he will catch up on his side of the story.
Thank you for listening and for caring!
Sunday, December 16, 2007
Back a week--Written off-line on the 16th
Well, it's Sunday night and I haven't done anything here in the blog for quite awhile. This time it's not my fault. Among several other shortcomings here in the dungeon (actually, it's the ground floor but feels like a dungeon) are almost non-existant wifi. When I can connect, it seems to die within about 5 minutes or so. It's been frustrating as all !@#$ trying to do anything.
Anyway, I finally figured out that I can still do entries off-line. Once I'm released, I'll post them.
So what's been going on? Friday evening, I had my first tent treatment. Not what I expected really. They came in with this industrial exhaust fan/filter (think large home ac filter, but pretty thick) and a plastic tent, maybe 8-10 mils thick. They put it over the head of the bed, covering my upper body. Then, they cut away the entire front of the plastic. The exhaust filter sits in here with me, right behind my head.
On the side, they have a funny-looking box, where they place a bottle of liquid. A pump draws fumes from the bottle and passes it to a hose that connects to the face mask. They turn on the exhaust, turn on the pump and slip the mask over my face. I lay like that for 3 hours at a time. I sure hope it's doing some good because it's rather hellish, mostly because of the length of time and how much of my day it sucks up.
That was about it for Friday. Saturday I got my new 'do. Alice took the promised picture today, Sunday, and I tried to post it...leading up to all the extra frustration. Sorry, as much as I'd like to keep things up to date, I can't do it all from my phone.
Saturday night, I received 2 units of whole blood. What a difference in energy. No more shortness of breath...of course, I can't actually walk anywhere yet, still stuck in this 12 x 12 room. The process of getting the blood was no fun though. Because of the quarantine during tent treatments, they can't really do anything during that time. So, the blood was done at bedtime. It takes two people to read numbers aloud to ensure that it's the right blood for the right patient. After it's running for 15 minutes, they check vitals. After another hour, they do it again. About an hour later, they change bags, doing it all over again. Suffice it to say I got no sleep that night. On the other hand, I asked for some benedryl before the next treatment and slept right through those 3 hours.
Also I had two treatments Saturday and two more Sunday. I'm now up to 5 total. The doc tells me that I'll have another nasal swab Monday and, if the results are clear Tuesday, I'm outta here Wednesday. No guarantees and I'm not packing until then.
entered Sunday 10pm
====================================
Anyway, I finally figured out that I can still do entries off-line. Once I'm released, I'll post them.
So what's been going on? Friday evening, I had my first tent treatment. Not what I expected really. They came in with this industrial exhaust fan/filter (think large home ac filter, but pretty thick) and a plastic tent, maybe 8-10 mils thick. They put it over the head of the bed, covering my upper body. Then, they cut away the entire front of the plastic. The exhaust filter sits in here with me, right behind my head.
On the side, they have a funny-looking box, where they place a bottle of liquid. A pump draws fumes from the bottle and passes it to a hose that connects to the face mask. They turn on the exhaust, turn on the pump and slip the mask over my face. I lay like that for 3 hours at a time. I sure hope it's doing some good because it's rather hellish, mostly because of the length of time and how much of my day it sucks up.
That was about it for Friday. Saturday I got my new 'do. Alice took the promised picture today, Sunday, and I tried to post it...leading up to all the extra frustration. Sorry, as much as I'd like to keep things up to date, I can't do it all from my phone.
Saturday night, I received 2 units of whole blood. What a difference in energy. No more shortness of breath...of course, I can't actually walk anywhere yet, still stuck in this 12 x 12 room. The process of getting the blood was no fun though. Because of the quarantine during tent treatments, they can't really do anything during that time. So, the blood was done at bedtime. It takes two people to read numbers aloud to ensure that it's the right blood for the right patient. After it's running for 15 minutes, they check vitals. After another hour, they do it again. About an hour later, they change bags, doing it all over again. Suffice it to say I got no sleep that night. On the other hand, I asked for some benedryl before the next treatment and slept right through those 3 hours.
Also I had two treatments Saturday and two more Sunday. I'm now up to 5 total. The doc tells me that I'll have another nasal swab Monday and, if the results are clear Tuesday, I'm outta here Wednesday. No guarantees and I'm not packing until then.
entered Sunday 10pm
====================================
Friday, December 14, 2007
Yet another first!
When I first met Jerry, he had a full head of hair. He let me know, very early on, that most of it was a weave since he had begun to lose his hair in his 20's. It took a few years, but I like to believe I finally convinced him to give up the weave and show off his beautiful head.
I guess the chemo has made him young again: he started losing his hair again!
There are many things I've never tried or done. Some I hope to do one day, others I could pass on for the rest of my life and be happy. One of those "pass on" things for me has always been cutting hair and especially using any kind of hair trimmer. Not sure why, but it has always frightened me.
Tonight, it truly was an honor to help Jerry by shaving his head. I won't say I wasn't frightened, because I was. But more than that, I felt useful and helpful and that felt terrific!
Think about it: he's in a place where they feed him, change his linens, and focus on his well being. There's really not much of a practical nature that I can do for him. I know he values the time we share, as do I, but I find myself always wanting to do something for him. Well, tonight I did and for that I am deeply grateful.
My handsome husband has a beautiful head. I plan to take the camera when I visit tomorrow and he will post pictures here, somehow. We tried to take pictures tonight with his phone, but the lighting was poor so they came out too dark. Though I like his beautiful head, I will gladly welcome back his beautiful curls!
I guess the chemo has made him young again: he started losing his hair again!
There are many things I've never tried or done. Some I hope to do one day, others I could pass on for the rest of my life and be happy. One of those "pass on" things for me has always been cutting hair and especially using any kind of hair trimmer. Not sure why, but it has always frightened me.
Tonight, it truly was an honor to help Jerry by shaving his head. I won't say I wasn't frightened, because I was. But more than that, I felt useful and helpful and that felt terrific!
Think about it: he's in a place where they feed him, change his linens, and focus on his well being. There's really not much of a practical nature that I can do for him. I know he values the time we share, as do I, but I find myself always wanting to do something for him. Well, tonight I did and for that I am deeply grateful.
My handsome husband has a beautiful head. I plan to take the camera when I visit tomorrow and he will post pictures here, somehow. We tried to take pictures tonight with his phone, but the lighting was poor so they came out too dark. Though I like his beautiful head, I will gladly welcome back his beautiful curls!
Thursday, December 13, 2007
twists and turns, another angle
Alice is one incredible woman. Not only that, we frequently think alike. I was planning on titling this twists and turns but you-know-who beat me to it.
So, here's how things played out from my side. They woke me at 4am Wednesday for the usual vital statistics, BP, temp, O2 levels and pulse. Turned out I had a fever, again. Now, to hospital folks 100.5 means fever and they handle it aggressively. Mine was 102.x. Within an hour I was on IV antibiotics and had blood and urine samples taken. A few hours later, I had a chest xray. Oh, and the worst thing was a nasal swab, where they shove a long Q-tip type thing up your nose and twist it around. Not something you'd want to have done to you.
When they started taking all the samples, Ida also mentioned that my red cells and platelets were also coming up. My white cell count took a giant leap from 1.4 to 5! As a reminder, it was 7 when I was admitted. That put me at a calculated ANC (don't ask) of 496...go home day is based on ANC crossing over 500. I was told that I'd be going home Thursday.
In the long run, that swab was priceless. It identified a virus. RSV, which is not uncommon in children. So, they know how to handle it...5-7 days, I'll be tented for a few hours a day while they give me Ribavirin. (the Emory wi-fi system seems to be down or I'd provide links).
So, now I find out from a nurse I'd never seen before that moment that I'm in for 5-7 more days...okay, I can handle that. However, he then continued with the fact that I'm moving. I knew it wasn't his fault and he was really helpful, dragging this huge cart that could hold ALL of my stuff.
I was definitely wiped out from the packing and moving. One of the symptoms of RSV is shortness of breath. I felt bad calling Alice but we'd agreed that she wants to be helpful in any way possible. I had packed some things away that I'd need overnight. Alice took care of those and then went home. As you can see from her posting below, she'd already had a busy day, starting off joining me for breakfast.
I go to sleep after another round of IV antibiotics and all sorts of pills. When I started this adventure, I began a medication log; I've given up on that. The last thing before lights out was a 4-5 hour drip of IV IG, immunoglobulin, that they give for viruses.
Apparently, they periodically up the drip rate. Around 1am or so, they raised the rate a tad, from 40 to 55 mililiters/hour. By 1:15 or so, I woke up to my entire body shivering and a feeliing of horrible cold. I hit the nurse call button and the nurse came in, She took one look at me, asked a few questions and left. Next, about a half-dozen interns (think Grey's Anatomy's first season) come into my room. They can't get my O2 readings but my BP is 145/90. It's usually on the low side, like 100/65. I counted 5 blankets on me this morning; they were sure trying to ease my discomfort.. They put an oxygen mask on me and the interns went away.
What's interesting about all this though is I discovered the heat in the room had never been turned on; it's a research center and there's frequently empty rooms! I don't know what the temp was in here but maybe I wasn't crazy...maybe it was actually cold...I know, more denial.
So the doc just left...after telling me that the blood culture showed some staph which probably means more drugs...blessings go to whoever invented this port thing in my chest. Imagine them just screwing and unscrewing these drug bags together and then connecting them to me the same way. They're also going to restart the IV IG at the lower rate.
This morning, I'm awakened by a transport person waiting to take me for a CT scan of my chest...rude awakening. But, the scan looked clean.
Sometime this morning, my temp is back up to about 102. A few hours later, I realized I'm hungry and ate my cold breakfast. Too bad it was supposed to be hot. Lunchtime, I felt like I had an appetite. I think I ate at least some of everything they brought. I think I mentioned earlier that when I have no appetite, it's time to be concerned. For it to return, feels good.
Oh yeah. and in the middle of all this craziness, I found out that my greatest masseuse ever is closing down her practice. Now you have to understand that this relationship is about so much more than just massage. It's the state of mind that lets her know all the places where you hurt. I understand and support her reasons; they're honorable and have her long-term goals in mind. She's a wonderful woman who I've told people about but never given out her name because I was afraid she'd be too busy to see me anymore.
Talk about a bummer day.
So, here's how things played out from my side. They woke me at 4am Wednesday for the usual vital statistics, BP, temp, O2 levels and pulse. Turned out I had a fever, again. Now, to hospital folks 100.5 means fever and they handle it aggressively. Mine was 102.x. Within an hour I was on IV antibiotics and had blood and urine samples taken. A few hours later, I had a chest xray. Oh, and the worst thing was a nasal swab, where they shove a long Q-tip type thing up your nose and twist it around. Not something you'd want to have done to you.
When they started taking all the samples, Ida also mentioned that my red cells and platelets were also coming up. My white cell count took a giant leap from 1.4 to 5! As a reminder, it was 7 when I was admitted. That put me at a calculated ANC (don't ask) of 496...go home day is based on ANC crossing over 500. I was told that I'd be going home Thursday.
In the long run, that swab was priceless. It identified a virus. RSV, which is not uncommon in children. So, they know how to handle it...5-7 days, I'll be tented for a few hours a day while they give me Ribavirin. (the Emory wi-fi system seems to be down or I'd provide links).
So, now I find out from a nurse I'd never seen before that moment that I'm in for 5-7 more days...okay, I can handle that. However, he then continued with the fact that I'm moving. I knew it wasn't his fault and he was really helpful, dragging this huge cart that could hold ALL of my stuff.
I was definitely wiped out from the packing and moving. One of the symptoms of RSV is shortness of breath. I felt bad calling Alice but we'd agreed that she wants to be helpful in any way possible. I had packed some things away that I'd need overnight. Alice took care of those and then went home. As you can see from her posting below, she'd already had a busy day, starting off joining me for breakfast.
I go to sleep after another round of IV antibiotics and all sorts of pills. When I started this adventure, I began a medication log; I've given up on that. The last thing before lights out was a 4-5 hour drip of IV IG, immunoglobulin, that they give for viruses.
Apparently, they periodically up the drip rate. Around 1am or so, they raised the rate a tad, from 40 to 55 mililiters/hour. By 1:15 or so, I woke up to my entire body shivering and a feeliing of horrible cold. I hit the nurse call button and the nurse came in, She took one look at me, asked a few questions and left. Next, about a half-dozen interns (think Grey's Anatomy's first season) come into my room. They can't get my O2 readings but my BP is 145/90. It's usually on the low side, like 100/65. I counted 5 blankets on me this morning; they were sure trying to ease my discomfort.. They put an oxygen mask on me and the interns went away.
What's interesting about all this though is I discovered the heat in the room had never been turned on; it's a research center and there's frequently empty rooms! I don't know what the temp was in here but maybe I wasn't crazy...maybe it was actually cold...I know, more denial.
So the doc just left...after telling me that the blood culture showed some staph which probably means more drugs...blessings go to whoever invented this port thing in my chest. Imagine them just screwing and unscrewing these drug bags together and then connecting them to me the same way. They're also going to restart the IV IG at the lower rate.
This morning, I'm awakened by a transport person waiting to take me for a CT scan of my chest...rude awakening. But, the scan looked clean.
Sometime this morning, my temp is back up to about 102. A few hours later, I realized I'm hungry and ate my cold breakfast. Too bad it was supposed to be hot. Lunchtime, I felt like I had an appetite. I think I ate at least some of everything they brought. I think I mentioned earlier that when I have no appetite, it's time to be concerned. For it to return, feels good.
Oh yeah. and in the middle of all this craziness, I found out that my greatest masseuse ever is closing down her practice. Now you have to understand that this relationship is about so much more than just massage. It's the state of mind that lets her know all the places where you hurt. I understand and support her reasons; they're honorable and have her long-term goals in mind. She's a wonderful woman who I've told people about but never given out her name because I was afraid she'd be too busy to see me anymore.
Talk about a bummer day.
Wednesday, December 12, 2007
Twists and turns
Life has such strange twists and turns!
I visited with Jerry this morning because I had work related stuff that would keep me busy until late in the evening. He told me that he was very close to the magic combination of numbers with his various blood cells that would add up to his going home! Such terrific news! He might possibly be coming home as soon as tomorrow!
I skipped off to work feeling very happy that I would soon have him home with me where I know he is most comfortable. Late this afternoon he calls with the bad news: he has a virus and he will have to stay in the hospital for at least a week while he undergoes this special treatment for it. I'll leave Jerry to give you all the particulars. He loves that medical stuff.
Well, of course I was deeply disappointed by that news but grateful that he was still where he would excellent medical care; ward 7E at Emory. Then I get another call. They moved him!!! He called because he was just too tired to unpack and needed some help.
Of course, I left for the hospital immediately. I finally found him, at the far end of the hospital. I had to track someone down to get a mask but was not offered a gown or gloves. One look at his room and I'm wanting to beat up somebody! I know hospital rooms aren't known for their beauty, but this one doesn't offer a comfortable chair for him to sit in, it has bent window blinds and who the heck knows where the light switches are! He'd had a dresser to keep his clothes in. In this new room, he has just a small night stand with a couple of small drawers!
At this point, were my mother here, she'd be warning folks to clear out of town as she recognizes the signs of when I am angry. Still, I am mostly keeping my cool. I ask Jerry if he has met his nurse yet, and he said no. He'd been there for a couple hours by then! So, I push the nurse button. Oh, a woman had come in and did bring ice when requested, but she hadn't introduced herself and wasn't wearing a badge to identify herself. Also, she didn't seem to know how often Jerry was supposed to use this breathing contraption - kind of a lung exerciser. Needless to say, I was quite surprised when this same woman came in when we called for the nurse.
Still, I'm trying to remain calm, though I am not a happy camper. I asked her a few questions and her answer was that she hadn't read Jerry's chart yet!!! Rather than make an enemy of the person who would be looking after him for the next little while anyway, I did my best to remain calm and explain to her that we had gotten spoiled on 7E but I still expected him to receive that level of care. I told her I would gladly work with them in any way that would be useful, but that I expected her to keep him as comfortable as possible.
Then I marched up to 7E to ask what the heck happened! I did learn the process of reporting a nurse and I found one of Jerry's favorite nurses, sweet Ida, whom I hadn't met, and asked that she look in on him. I left with grateful tears knowing that someone was there who truly cares about him and would look in on him.
Now it's way past my bedtime but I feel better for having vented here. We still are quite fortunate; Emory is an excellent hospital and I'm sure Jerry will be given excellent care. And if not, they will have to contend with me. As I said to one of my favorite techs on 7E, "Don't mess with my man - I'm a lot meaner than I look!"
Thank you for listening and thank you so very much for your prayers.
I visited with Jerry this morning because I had work related stuff that would keep me busy until late in the evening. He told me that he was very close to the magic combination of numbers with his various blood cells that would add up to his going home! Such terrific news! He might possibly be coming home as soon as tomorrow!
I skipped off to work feeling very happy that I would soon have him home with me where I know he is most comfortable. Late this afternoon he calls with the bad news: he has a virus and he will have to stay in the hospital for at least a week while he undergoes this special treatment for it. I'll leave Jerry to give you all the particulars. He loves that medical stuff.
Well, of course I was deeply disappointed by that news but grateful that he was still where he would excellent medical care; ward 7E at Emory. Then I get another call. They moved him!!! He called because he was just too tired to unpack and needed some help.
Of course, I left for the hospital immediately. I finally found him, at the far end of the hospital. I had to track someone down to get a mask but was not offered a gown or gloves. One look at his room and I'm wanting to beat up somebody! I know hospital rooms aren't known for their beauty, but this one doesn't offer a comfortable chair for him to sit in, it has bent window blinds and who the heck knows where the light switches are! He'd had a dresser to keep his clothes in. In this new room, he has just a small night stand with a couple of small drawers!
At this point, were my mother here, she'd be warning folks to clear out of town as she recognizes the signs of when I am angry. Still, I am mostly keeping my cool. I ask Jerry if he has met his nurse yet, and he said no. He'd been there for a couple hours by then! So, I push the nurse button. Oh, a woman had come in and did bring ice when requested, but she hadn't introduced herself and wasn't wearing a badge to identify herself. Also, she didn't seem to know how often Jerry was supposed to use this breathing contraption - kind of a lung exerciser. Needless to say, I was quite surprised when this same woman came in when we called for the nurse.
Still, I'm trying to remain calm, though I am not a happy camper. I asked her a few questions and her answer was that she hadn't read Jerry's chart yet!!! Rather than make an enemy of the person who would be looking after him for the next little while anyway, I did my best to remain calm and explain to her that we had gotten spoiled on 7E but I still expected him to receive that level of care. I told her I would gladly work with them in any way that would be useful, but that I expected her to keep him as comfortable as possible.
Then I marched up to 7E to ask what the heck happened! I did learn the process of reporting a nurse and I found one of Jerry's favorite nurses, sweet Ida, whom I hadn't met, and asked that she look in on him. I left with grateful tears knowing that someone was there who truly cares about him and would look in on him.
Now it's way past my bedtime but I feel better for having vented here. We still are quite fortunate; Emory is an excellent hospital and I'm sure Jerry will be given excellent care. And if not, they will have to contend with me. As I said to one of my favorite techs on 7E, "Don't mess with my man - I'm a lot meaner than I look!"
Thank you for listening and thank you so very much for your prayers.
Tuesday, December 11, 2007
Red Blood Cells
One thing I need to clarify;
the wbc's are always the first to come back, due to the growth hormone shots. I'm told that the red cells could continue to fall, requiring that blood be given. Part of me is wishing that it drops a tad more so I can get the blood, chock-ful of red cells.
Today was the lowest energy level day ever; I barely had the strength to walk across the room.
It'll get better. It's just a matter of time now.
the wbc's are always the first to come back, due to the growth hormone shots. I'm told that the red cells could continue to fall, requiring that blood be given. Part of me is wishing that it drops a tad more so I can get the blood, chock-ful of red cells.
Today was the lowest energy level day ever; I barely had the strength to walk across the room.
It'll get better. It's just a matter of time now.
White Blood Cells
I got great news this morning that I wanted to share.
My wbc count has gone up! It's been lower than .3, they can't measure anything lower than that. As of this morning, it was 1.4. That's still a ways to go to reach the 7+ it was when I got here but it means:
I'VE GOT FUNCTIONAL BONE MARROW AGAIN!
Now it's time for breakfast.
My wbc count has gone up! It's been lower than .3, they can't measure anything lower than that. As of this morning, it was 1.4. That's still a ways to go to reach the 7+ it was when I got here but it means:
I'VE GOT FUNCTIONAL BONE MARROW AGAIN!
Now it's time for breakfast.
Monday, December 10, 2007
Days +9, +10 and +11
I'm bbbaaaacccckkkk! Well not exactly, but I'm posting again. I think sometimes things come up that I need to process myself before actually committing them here.
So to catch up...Saturday morning rolled around. The diarrhea I've been suffering from forever continued...but I had a revelation! Something topical would let me sit down a bit more comfortably...maybe. I asked the doctor about it during rounds; she said she'd get the stuff right up here...3 hours later, they bring up "Boudreaux's Butt Paste", a knockoff brand of Desitin! That's not what she promised; she'd mentioned a product that was loaded with hydrocortisone. Of course by this time, she's gone. I spoke with the nurse who, after finding another doc to write new orders, got me the good stuff. Interestingly, the diarrhea seems to be abating as well. For those of you who thought I shouldn't get back on the bike at all or should really back off, my butt will not be able to sit on that seat for awhile.
Also on Saturday, the morning lab work showed my platelets down below 10 (I have no idea what measurement they use). That's a trigger to get my first blood products. Yup, I was given a bag of platelets. It took them most of the day to get here; I'm type A- which is pretty rare. They had to bring it in from another state. I could possibly be the only ever amyloidosis A- patient.
Yesterday, I was told that I'm borderline on Hematocrit (HCT), a measure of how much oxygen your blood can carry. If it drops any further, I'll get some whole blood. This is a good thing since my energy levels have dropped quickly. Between the low HCT and the mask, I had to take a rest halfway during my mandatory mile walk (in lieu of the bike riding).
The good news is that the white cells have been bottomed out for 4 days now and, hopefully, should start increasing any day now.
I'm sure this low energy level is perfectly normal, I'm not used to getting winded just walking down a hall. It's a little depressing. As one of my nurse's said, "This too shall pass".
During one of today's vital signs readings(which happen throughout the day and night), my blood pressure was at an all-time low, 90/58. Although it always runs a little low, like 110/65, this seems to be a little radical...but it also explains why on occasion, I feel lightheaded if I stand up too fast. It's possible that the large dose of diuretic to remove the fluids might have overdone its usefulness. It's standard medicine for bringing down blood pressure which it seems to be doing very well.
On top of all that, my appetite, which I'm proud of, is giving out on me. In a way, it's a good thing as my activity level is down too. On the other hand, I think all my water weight seems to be gone. When I checked in, I was 185. Before all this started, I stayed around 165. This morning's weigh-in (they weigh us twice every day) recorded me at 165.
Alice is very good at thanking all you wonderful folks for the good thoughts and prayers you've been sending our way. I'm afraid I'm not so good at it; I think it's my independent streak that doesn't want to recognize my need for others. However, through all of this, I've been heartened by the cards and emails I've been receiving.People ask if they'd mind if I were put on their synagogue or church's prayer list. Absolutely not.
Last night, I and the nurse who got me the right butt stuff were chatting. Her father was a Baptist minister; He served at what is now the "Tabernacle" when it was still a church. She asked very nicely if I'd mind if she said a prayer for me. I never say no to something that might help, but was expecting something a little more fire and brimstone than I got. It was a very nice prayer...but I didn't expect it to happen that moment; I figured she'd say one next time she was in church.
Today I woke up to the smell of breakfast. I ate, got up and walked, showered and then realized I was tired. I closed my eyes and awoke to lunch and a phone that had been ringing for about an hour. I think I needed it.
Hope that catches everyone up. I'm discontinuing the bike chart for now. It'd be pointless to keep putting in "walked".
Jerry
So to catch up...Saturday morning rolled around. The diarrhea I've been suffering from forever continued...but I had a revelation! Something topical would let me sit down a bit more comfortably...maybe. I asked the doctor about it during rounds; she said she'd get the stuff right up here...3 hours later, they bring up "Boudreaux's Butt Paste", a knockoff brand of Desitin! That's not what she promised; she'd mentioned a product that was loaded with hydrocortisone. Of course by this time, she's gone. I spoke with the nurse who, after finding another doc to write new orders, got me the good stuff. Interestingly, the diarrhea seems to be abating as well. For those of you who thought I shouldn't get back on the bike at all or should really back off, my butt will not be able to sit on that seat for awhile.
Also on Saturday, the morning lab work showed my platelets down below 10 (I have no idea what measurement they use). That's a trigger to get my first blood products. Yup, I was given a bag of platelets. It took them most of the day to get here; I'm type A- which is pretty rare. They had to bring it in from another state. I could possibly be the only ever amyloidosis A- patient.
Yesterday, I was told that I'm borderline on Hematocrit (HCT), a measure of how much oxygen your blood can carry. If it drops any further, I'll get some whole blood. This is a good thing since my energy levels have dropped quickly. Between the low HCT and the mask, I had to take a rest halfway during my mandatory mile walk (in lieu of the bike riding).
The good news is that the white cells have been bottomed out for 4 days now and, hopefully, should start increasing any day now.
I'm sure this low energy level is perfectly normal, I'm not used to getting winded just walking down a hall. It's a little depressing. As one of my nurse's said, "This too shall pass".
During one of today's vital signs readings(which happen throughout the day and night), my blood pressure was at an all-time low, 90/58. Although it always runs a little low, like 110/65, this seems to be a little radical...but it also explains why on occasion, I feel lightheaded if I stand up too fast. It's possible that the large dose of diuretic to remove the fluids might have overdone its usefulness. It's standard medicine for bringing down blood pressure which it seems to be doing very well.
On top of all that, my appetite, which I'm proud of, is giving out on me. In a way, it's a good thing as my activity level is down too. On the other hand, I think all my water weight seems to be gone. When I checked in, I was 185. Before all this started, I stayed around 165. This morning's weigh-in (they weigh us twice every day) recorded me at 165.
Alice is very good at thanking all you wonderful folks for the good thoughts and prayers you've been sending our way. I'm afraid I'm not so good at it; I think it's my independent streak that doesn't want to recognize my need for others. However, through all of this, I've been heartened by the cards and emails I've been receiving.People ask if they'd mind if I were put on their synagogue or church's prayer list. Absolutely not.
Last night, I and the nurse who got me the right butt stuff were chatting. Her father was a Baptist minister; He served at what is now the "Tabernacle" when it was still a church. She asked very nicely if I'd mind if she said a prayer for me. I never say no to something that might help, but was expecting something a little more fire and brimstone than I got. It was a very nice prayer...but I didn't expect it to happen that moment; I figured she'd say one next time she was in church.
Today I woke up to the smell of breakfast. I ate, got up and walked, showered and then realized I was tired. I closed my eyes and awoke to lunch and a phone that had been ringing for about an hour. I think I needed it.
Hope that catches everyone up. I'm discontinuing the bike chart for now. It'd be pointless to keep putting in "walked".
Jerry
Saturday, December 8, 2007
Masks!! Okay, now I'm mad!
This amyloidosis has been quite a challenge, but I've been adjusting so far. I really don't mind stepping up and taking care of the home fires while Jerry deals with this bit of annoyance. I enjoy the walk to and from the parking deck to his room. What the heck, I haven't had time to go to the gym for a while, so it's getting me back into shape for when I can finally return. I don't mind schlepping my meals to his room so we can share some normalcy.
But these darn masks make it mighty difficult to kiss the man I love and that makes me MAD!!!
Okay, I get that it's for his protection and I would truly hate to pass along any germ that would cause him any illness with his white blood cell count so low. But not kissing my handsome husband!?!? This is a new kind of torture!!
I went to an annual holiday party with some dearly treasured friends and it almost felt like I was naked without him beside me. I even ate extra dessert because I know he loves the desserts these friends make. Heck, my dinner plate looked a whole lot like his at pot luck suppers! (I did cheat and make half of it salad.) We all agreed we were looking forward to next year when Jerry would be back at the table amazing us with his wonderful appetite.
For all those concerned, Jerry has learned his lesson about exertion on the bicycle. He really didn't expect his body to react like that. He is considered a low maintenance patient because he really does do what the doctors and nurses tell him to do! You know, for a genius, he really is pretty smart in the ways that count the most - he's sensible.
I had hoped to be having another pajama party this weekend, but alas, I must sleep alone. He's worried that I'm not getting enough rest and I do think it would be a difficult challenge to sleep with one of those dang masks on. :-(
I've got my fingers crossed that his numbers will bounce back now that he's getting the growth hormone shots and I'll have him home in our own bed very soon.
Thank you, each of you, for your continued support, prayers and comments. You give both of us such strength!
But these darn masks make it mighty difficult to kiss the man I love and that makes me MAD!!!
Okay, I get that it's for his protection and I would truly hate to pass along any germ that would cause him any illness with his white blood cell count so low. But not kissing my handsome husband!?!? This is a new kind of torture!!
I went to an annual holiday party with some dearly treasured friends and it almost felt like I was naked without him beside me. I even ate extra dessert because I know he loves the desserts these friends make. Heck, my dinner plate looked a whole lot like his at pot luck suppers! (I did cheat and make half of it salad.) We all agreed we were looking forward to next year when Jerry would be back at the table amazing us with his wonderful appetite.
For all those concerned, Jerry has learned his lesson about exertion on the bicycle. He really didn't expect his body to react like that. He is considered a low maintenance patient because he really does do what the doctors and nurses tell him to do! You know, for a genius, he really is pretty smart in the ways that count the most - he's sensible.
I had hoped to be having another pajama party this weekend, but alas, I must sleep alone. He's worried that I'm not getting enough rest and I do think it would be a difficult challenge to sleep with one of those dang masks on. :-(
I've got my fingers crossed that his numbers will bounce back now that he's getting the growth hormone shots and I'll have him home in our own bed very soon.
Thank you, each of you, for your continued support, prayers and comments. You give both of us such strength!
Friday, December 7, 2007
Day +7 & +8
The days just march on, don't they? I heard a few days ago of another Amyloidosis patient here who was discharged on Day+11. For me, that would be just a few more days. The criteria for discharge is based on blood counts; white blood cells (your basic immune system) need to be adequate for some level of protection. Mine are at rock bottom now but yesterday began a series of Neupogen (growth hormone) shots. As before, they'll jumpstart my bone marrow, what's been made so far, to put out extra white cells.
Yesterday, I became 'famous' here in the ward! I had finished my 30 minutes on the bike, racking up 10.3 miles. I got off the bike and realized I was a little light-headed. I stood against the wall and held onto the bike. Next thing I knew, I was looking up at a ring of about a dozen people, doctors, nurses, etc. They of course were looking down with real concern on their faces. Someone handed me a cup of juice which really tasted great. I waved everyone off me so I could stand under my own power. They offered a cart ride back to my room; I said I'd accept an escort but that I'd be walking under my own power...and that's what I did.
I found out afterward that someone saw me go down and hit my head on the floor. She called a 'code', which means everyone comes running. The big concern was that, with my platelet count so low at the moment, if I bled from the head, it could have gotten very messy.
I've been forced to promise no more 30 minute rides. I can do two 15 minute rides with a break between..which is what I'll do. As you can see from the list, I just walked today. Oh yeah, and we're now in 'flu season lockdown'. When out of my room, I need to be masked. That took a lot out of me when walking.
Beyond the walk, I did pretty much nothing for most of the day.
I've been having some stomach issues; I feel like I've overeaten all the time. They tell me it's still due to the chemo and have now doubled up on my Nexium (the purple pill). So far it hasn't helped. Hopefully, it'll kick in for tomorrow.
Enough for tonight.
TTYL,
Jerry
Yesterday, I became 'famous' here in the ward! I had finished my 30 minutes on the bike, racking up 10.3 miles. I got off the bike and realized I was a little light-headed. I stood against the wall and held onto the bike. Next thing I knew, I was looking up at a ring of about a dozen people, doctors, nurses, etc. They of course were looking down with real concern on their faces. Someone handed me a cup of juice which really tasted great. I waved everyone off me so I could stand under my own power. They offered a cart ride back to my room; I said I'd accept an escort but that I'd be walking under my own power...and that's what I did.
I found out afterward that someone saw me go down and hit my head on the floor. She called a 'code', which means everyone comes running. The big concern was that, with my platelet count so low at the moment, if I bled from the head, it could have gotten very messy.
I've been forced to promise no more 30 minute rides. I can do two 15 minute rides with a break between..which is what I'll do. As you can see from the list, I just walked today. Oh yeah, and we're now in 'flu season lockdown'. When out of my room, I need to be masked. That took a lot out of me when walking.
Beyond the walk, I did pretty much nothing for most of the day.
I've been having some stomach issues; I feel like I've overeaten all the time. They tell me it's still due to the chemo and have now doubled up on my Nexium (the purple pill). So far it hasn't helped. Hopefully, it'll kick in for tomorrow.
Enough for tonight.
TTYL,
Jerry
Wednesday, December 5, 2007
Balance: an interesting concept
No time to blog lately. I've been too busy being a super wife/branch manager/non-complainer. ;-)
(Please, those of you who are kind enough to listen to my complaints, let's keep them our secret, okay?)
For me, balance is really a simple thing: faith and family first. This journey involves both for me. Jerry is the very heart and soul of my family. "Home" is wherever he is so it feels quite natural to have dinner with him most nights. It may take a little more planning, but it's worth any effort. It's also a great diet plan. I sure don't want to schlep lots of food to the hospital every night. It's a fair distance to walk from the parking lot to his room, carrying stuff especially!
Jerry's choice to live within his principles has always inspired me. His attitude and approach to dealing with this "bit of inconvience" really blows me away. I am really amazed at how well he is doing. I've heard so many horror stories about chemo and the bottoming out, I am frankly amazed when I walk into his room and find him looking much his normal self. Okay, sometimes he gets a little lazy about shaving, but he does that on weekends so it's not all that unusual. It is a reminder to me just how fortunate we are that he was in such terrific shape when this started.
A co-worker emailed me today and asked how we were doing. I told her we were on the bumpy road part of our journey but that I knew we'd be sailing on a smooth highway again in no time. I told her we couldn't miss with so many terrific people pulling for us. I am so deeply grateful to each of you who ask how Jerry is and for each of you who send thoughts and prayers his way. It does help. Keep up the great work!
With gratitude and prayers for peace.
Bike nut's (super) wife
(Please, those of you who are kind enough to listen to my complaints, let's keep them our secret, okay?)
For me, balance is really a simple thing: faith and family first. This journey involves both for me. Jerry is the very heart and soul of my family. "Home" is wherever he is so it feels quite natural to have dinner with him most nights. It may take a little more planning, but it's worth any effort. It's also a great diet plan. I sure don't want to schlep lots of food to the hospital every night. It's a fair distance to walk from the parking lot to his room, carrying stuff especially!
Jerry's choice to live within his principles has always inspired me. His attitude and approach to dealing with this "bit of inconvience" really blows me away. I am really amazed at how well he is doing. I've heard so many horror stories about chemo and the bottoming out, I am frankly amazed when I walk into his room and find him looking much his normal self. Okay, sometimes he gets a little lazy about shaving, but he does that on weekends so it's not all that unusual. It is a reminder to me just how fortunate we are that he was in such terrific shape when this started.
A co-worker emailed me today and asked how we were doing. I told her we were on the bumpy road part of our journey but that I knew we'd be sailing on a smooth highway again in no time. I told her we couldn't miss with so many terrific people pulling for us. I am so deeply grateful to each of you who ask how Jerry is and for each of you who send thoughts and prayers his way. It does help. Keep up the great work!
With gratitude and prayers for peace.
Bike nut's (super) wife
Day +4, +5 and +6
Has it really been that long since I've actually written anything here? It's now Wednesday, D+6.
Monday and Tuesday were pretty quiet days. I rode close to 11 miles Monday. Monday night, I got hit with a 'good' case of diarrhea. Called the nurse and asked about something for it. Another lesson in hospital life. It seems there first has to be a collection of a sample, sample being defined within strict limits of fluidity. Once a qualified sample is sent to the lab, they have to culture it. Once they figure out what's going on, they may give you something. No thanks.
Because of the diarrhea and just feeling really weak in the morning, I stayed off the bike Tuesday. We're required to walk at least a mile though so I did it at a decent clip. It's funny though; part of me feels that I would have felt better in the afternoon had I actually rode. I feel as if I let myself down.
Tuesday night, Alice came over bearing Hanukkah gifts. I should mention that she's here every night; usually bringing her dinner so we have a picnic in the room; just staying caught up with each other's lives. She's going through lots of her own stuff right now. She had a second low back steroid shot that still hasn't helped.
She's a Branch Manager for Georgia's Own Credit Union (formerly Georgia Telco). Her branch has been in what was BellSouth's executive building...not the big white tower, this is a very nice building close to Colony Square. Since BellSouth's demise, many of her members have retired, moved on, etc. The Credit Union saw this as a wonderful opportunity, new offices in the building meant new members. Alice's branch is moving to a new area of the building, much more visible. It's also growing, doubling in employees working for her. I'm so proud of her. She handles all this so naturally. Those of you who know me might remember my foray into managerial duties. I hated it, feeling like I couldn't do the fun stuff anymore.
So now she's got her back, her new branch and me to balance and I've never heard a real complaint from her.
So anyway, Tuesday was Hanukkah festivities. A few cards, some nice balloons from a dear friend of Alice's, and a pair of zip-up hoodies. I'd asked for these before all this fun began. I realized how nice a sweatshirt with a hood can feel on a cold day...especially with my already folicularly challenged pate. So now, 'when' I lose the rest of it, it'll be just the thing for winter. The doc says it'll still fall out; I say it's been fighting so long to hang around, it's not going anywhere. Good chance the doc's right and I'm wrong but that's my story and I'm sticking to it.
Today I woke up feeling halfway decent. A good breakfast and onto the bike again...I wanted some endorphines! Did almost 10 miles out there in my 30 minute stint. Not too bad, huh? As usual, the shower I earned felt wonderful.
While typing this, my doc came through doing rounds. He said the worst should be tomorrow and was rather surprised when I told him about my 10 mile ride!
Enough for now.
Thanks for reading,
Jerry
Monday and Tuesday were pretty quiet days. I rode close to 11 miles Monday. Monday night, I got hit with a 'good' case of diarrhea. Called the nurse and asked about something for it. Another lesson in hospital life. It seems there first has to be a collection of a sample, sample being defined within strict limits of fluidity. Once a qualified sample is sent to the lab, they have to culture it. Once they figure out what's going on, they may give you something. No thanks.
Because of the diarrhea and just feeling really weak in the morning, I stayed off the bike Tuesday. We're required to walk at least a mile though so I did it at a decent clip. It's funny though; part of me feels that I would have felt better in the afternoon had I actually rode. I feel as if I let myself down.
Tuesday night, Alice came over bearing Hanukkah gifts. I should mention that she's here every night; usually bringing her dinner so we have a picnic in the room; just staying caught up with each other's lives. She's going through lots of her own stuff right now. She had a second low back steroid shot that still hasn't helped.
She's a Branch Manager for Georgia's Own Credit Union (formerly Georgia Telco). Her branch has been in what was BellSouth's executive building...not the big white tower, this is a very nice building close to Colony Square. Since BellSouth's demise, many of her members have retired, moved on, etc. The Credit Union saw this as a wonderful opportunity, new offices in the building meant new members. Alice's branch is moving to a new area of the building, much more visible. It's also growing, doubling in employees working for her. I'm so proud of her. She handles all this so naturally. Those of you who know me might remember my foray into managerial duties. I hated it, feeling like I couldn't do the fun stuff anymore.
So now she's got her back, her new branch and me to balance and I've never heard a real complaint from her.
So anyway, Tuesday was Hanukkah festivities. A few cards, some nice balloons from a dear friend of Alice's, and a pair of zip-up hoodies. I'd asked for these before all this fun began. I realized how nice a sweatshirt with a hood can feel on a cold day...especially with my already folicularly challenged pate. So now, 'when' I lose the rest of it, it'll be just the thing for winter. The doc says it'll still fall out; I say it's been fighting so long to hang around, it's not going anywhere. Good chance the doc's right and I'm wrong but that's my story and I'm sticking to it.
Today I woke up feeling halfway decent. A good breakfast and onto the bike again...I wanted some endorphines! Did almost 10 miles out there in my 30 minute stint. Not too bad, huh? As usual, the shower I earned felt wonderful.
While typing this, my doc came through doing rounds. He said the worst should be tomorrow and was rather surprised when I told him about my 10 mile ride!
Enough for now.
Thanks for reading,
Jerry
Sunday, December 2, 2007
Day 2 & 3
The past few days have been different, as I guess I get settled into the routine of the place. Saturday (Day 2), I woke up after what felt like a good rest. Breakfast came and, afterward, I got on the stationary bike in the hall. While there I figured out how to tell mileage vs time. As you might have noticed, there's now a small list here showing how good (or bad in days to come) I get.
The exercise felt GREAT! While riding, my two doctors (one may be a resident) saw me and actually checked me out while on the bike. It was kind of funny to have them listening to my heart and lungs while I'm huffing and puffing. They said it was fine though and to keep up the good work. A bandage change after a shower and I was set for the rest of the day. Too bad I don't remember much for awhile; guess I just spaced out. I know I ate lunch but can see just how easy it is to lose track of time and days. Hopefully, this blog will help.
Much of Saturday seems a blur, until Alice got here around dinnertime.
The Pajama Party was such a great lift. We didn't do much of anything but chat; we always try to touch base about our days whenever we can; it made things seem a bit more normal.
Around 2 or 3 Sunday morning, I had a problem. I was feeling a bit congested and having a little trouble swallowing and my breathing was a little coarse. I laid there for awhile thinking, "if I call the nurse, Alice will wake up and be worried." How stupid can I get, huh? So I did the smart thing, woke her myself, said "it's no big deal but I'm getting a nurse" and did what was necessary. I asked for some Benedryl to clear up the congestion...he also brought a 'pain pill' to ease the swallowing. I found out the next morning it was more oxycodone.
It turns out that the swallowing trouble is normal and it may get worse. It's an inflammation of the mucous linings of the alimentary canal...that's us from our mouth to our anus. Anyway, it's normal for mouth and throat to get inflamed from the chemo. Depending on how far it goes, it can cause other problems and possibly even keepme from eating. Hah, I'd like to see that happen:-). My standing mantra, "we shall see".
So, Sunday morning comes along. We wake up, breakfast shows up after a bit. Alice gets her breakfast from the kitchen and we chow down again. Other than the settings, it was a good way to start the day. After breakfast, Alice heads home...gotta take care of herself and the pets and the house and all the things that normally take two people to do. It's just not the same with only one person doing chores.
Before Alice left, the day nurse, Heather, warns me that my white blood count is starting to come down and I should wear a mask when in the hallway, on the bike. So much for charting how I do, right? So I get on the bike and start pedaling. It's a little strange but what do ya do? I'm a bit slower of course, kind of like a car with a dirty air cleaner, I guess. 25 minutes into a 30 minute ride, the doc comes along and says I don't need the mask. What a difference!
Something caught my eye behind me while I was riding. I turn around and see a small guy walking with two large men in Department of Corrections uniforms behind him. It seems we have a prisoner on the floor. I don't know his story and doubt that I'll find it out. I do know that we're supposed to do 21 laps around the floor (or in my case, some time on the bike). He might have done 5 laps or so. Then again, he also had leg irons on which might give him extra credit for his laps.
While typing this, I just realized that it's laundry day. I've got a few things to wash out...maybe sack out in the laundry/TV room for awhile.
One last thing that seems a little strange, I feel spacey. Not drugged but not totally myself either. The cool part of it is a friend who plays a Theramin sent me a link to a duet he and a friend did. What a great sound. It took me back to the 70's.
The exercise felt GREAT! While riding, my two doctors (one may be a resident) saw me and actually checked me out while on the bike. It was kind of funny to have them listening to my heart and lungs while I'm huffing and puffing. They said it was fine though and to keep up the good work. A bandage change after a shower and I was set for the rest of the day. Too bad I don't remember much for awhile; guess I just spaced out. I know I ate lunch but can see just how easy it is to lose track of time and days. Hopefully, this blog will help.
Much of Saturday seems a blur, until Alice got here around dinnertime.
The Pajama Party was such a great lift. We didn't do much of anything but chat; we always try to touch base about our days whenever we can; it made things seem a bit more normal.
Around 2 or 3 Sunday morning, I had a problem. I was feeling a bit congested and having a little trouble swallowing and my breathing was a little coarse. I laid there for awhile thinking, "if I call the nurse, Alice will wake up and be worried." How stupid can I get, huh? So I did the smart thing, woke her myself, said "it's no big deal but I'm getting a nurse" and did what was necessary. I asked for some Benedryl to clear up the congestion...he also brought a 'pain pill' to ease the swallowing. I found out the next morning it was more oxycodone.
It turns out that the swallowing trouble is normal and it may get worse. It's an inflammation of the mucous linings of the alimentary canal...that's us from our mouth to our anus. Anyway, it's normal for mouth and throat to get inflamed from the chemo. Depending on how far it goes, it can cause other problems and possibly even keepme from eating. Hah, I'd like to see that happen:-). My standing mantra, "we shall see".
So, Sunday morning comes along. We wake up, breakfast shows up after a bit. Alice gets her breakfast from the kitchen and we chow down again. Other than the settings, it was a good way to start the day. After breakfast, Alice heads home...gotta take care of herself and the pets and the house and all the things that normally take two people to do. It's just not the same with only one person doing chores.
Before Alice left, the day nurse, Heather, warns me that my white blood count is starting to come down and I should wear a mask when in the hallway, on the bike. So much for charting how I do, right? So I get on the bike and start pedaling. It's a little strange but what do ya do? I'm a bit slower of course, kind of like a car with a dirty air cleaner, I guess. 25 minutes into a 30 minute ride, the doc comes along and says I don't need the mask. What a difference!
Something caught my eye behind me while I was riding. I turn around and see a small guy walking with two large men in Department of Corrections uniforms behind him. It seems we have a prisoner on the floor. I don't know his story and doubt that I'll find it out. I do know that we're supposed to do 21 laps around the floor (or in my case, some time on the bike). He might have done 5 laps or so. Then again, he also had leg irons on which might give him extra credit for his laps.
While typing this, I just realized that it's laundry day. I've got a few things to wash out...maybe sack out in the laundry/TV room for awhile.
One last thing that seems a little strange, I feel spacey. Not drugged but not totally myself either. The cool part of it is a friend who plays a Theramin sent me a link to a duet he and a friend did. What a great sound. It took me back to the 70's.
Saturday, December 1, 2007
pajama party!!
I'm off to spend the night on the delightful bed chair that is in each room for just such a purpose. I feel like I've packed for a week! I have to have the basics: pj's, toothpaste, pillow. But I've also packed dinner tonight and breakfast for the morning. I'm not part of their meal plans, as is appropriate. If anyone has clever ideas for easy picnic type meals to make from cooked turkey, pork or chicken, I welcome the ideas. We do like sharing meals whenever possible.
With continued gratitude,
Bike nut's wife
With continued gratitude,
Bike nut's wife
Friday, November 30, 2007
Day + 1
As Alice has already written, yesterday was the Big Day. The doc said it'd be rather anticlimactic after everything so far...and he was right. Except for the hullabaloo with the singing and the hat, it was pretty uneventful. However, it truly is the first day of the rest of my life. Too bad I slept through a fair amount of it, catching up from the previous night.
A whole immune system to grow. I haven't had to do that since I was a newborn...and even then I had some help from my mother.
Today, I woke up to pill delivery around 6; laid around for about an hour and breakfast showed up. Ate it, put some clothes on and got on their stationary bike for 30 minutes. It's been awhile since I was allowed to work up a sweat so this felt great. Of course, I felt like stopping after 10 and 20 minutes but just kept going. The shower following it was absolutely wonderful...another first, the dressing over my venous catheter didn't need to be covered.
One interesting side note, I got a visit from the dietitian. It seems that starting Wednesday I was supposed to be on a special low bacteria diet. They never told me and the menu choices stayed the same. Starting this afternoon apparently things change. On the other hand, I was told about a stash of "Mighty Shakes" in the kitchen.
My appetite is still good...they say that'll change in the next few days as the blood cells plunge.
As everything else goes around here...we'll see what comes next.
Thanks for taking part in this.
Jerry
A whole immune system to grow. I haven't had to do that since I was a newborn...and even then I had some help from my mother.
Today, I woke up to pill delivery around 6; laid around for about an hour and breakfast showed up. Ate it, put some clothes on and got on their stationary bike for 30 minutes. It's been awhile since I was allowed to work up a sweat so this felt great. Of course, I felt like stopping after 10 and 20 minutes but just kept going. The shower following it was absolutely wonderful...another first, the dressing over my venous catheter didn't need to be covered.
One interesting side note, I got a visit from the dietitian. It seems that starting Wednesday I was supposed to be on a special low bacteria diet. They never told me and the menu choices stayed the same. Starting this afternoon apparently things change. On the other hand, I was told about a stash of "Mighty Shakes" in the kitchen.
My appetite is still good...they say that'll change in the next few days as the blood cells plunge.
As everything else goes around here...we'll see what comes next.
Thanks for taking part in this.
Jerry
Thursday, November 29, 2007
A Birth day, of sorts
Jerry was given his stem cell transplant today. The staff treats it like a birth day, with hats and balloons and everything. Sure wish I could have been there for the party! I know Jerry will fill in all the pertinent details.
I packed up some of the scrumptious dinner our generous neighbor brought me yesterday (I will likely get three meals out of it - quite a feast!), the afghan I'm crocheting for Jerry, a couple of odds and ends he asked me to bring and headed over to 7E. It is a restricted floor so you have to press a call button to be let in. What I didn't realize was that the doors don't open automatically. You still have to push. Live and learn.
Once Jerry's dinner was delivered, I popped down to the kitchen and put mine in the microwave so we could actually have dinner together. We even shared desserts. His peach cobbler was a delightful topping on the yummy cheesecake our generous neighbor had included in the feast she delivered.
We generally lead a very quiet life. A typcial day has us arriving home from work around the same time many evenings. We then prepare our dinner together and talk about our day. We typically eat our dinner in front of the TV, watching something we had recorded with the TIVO. I guess we tried to have as much of a normal evening as we could. We talked about our day while waiting for the dinner cart. We didn't watch the TV while eating (a nice change!) but we did turn it on after dinner. Boy, we sure were missing the TIVO!
Overall, we spent a nice, quiet evening. It was nearly normal except for the fact that my husband smelled a lot like creamed corn and he actually fell asleep during a mystery! The smell is a side effect of the chemical (?) used to store/freeze the stem cells. Jerry can fill you in on the names of the various meds, etc. It really makes my head spin.
Jerry was so soundly asleep, he didn't even stir when I kissed him goodnight and left for the day. He'd had quite a full day with meds, meals, more meds and more meals. He did spend 25 minutes on the stationary bike they have on the ward. Even worked up a good sweat. On my to bring next time list is workout clothes. Somethings, blessfully, never change.
Off to dreamland for me. Tomorrow is Friday (thank God!) and I do want to go in early so that I won't feel so guilty when I leave a tad early.
I still cannot thank everyone enough for all the well wishes and prayers on our behalf. I feel we are blanketed with love from many marvelous people. We are indeed blessed.
I packed up some of the scrumptious dinner our generous neighbor brought me yesterday (I will likely get three meals out of it - quite a feast!), the afghan I'm crocheting for Jerry, a couple of odds and ends he asked me to bring and headed over to 7E. It is a restricted floor so you have to press a call button to be let in. What I didn't realize was that the doors don't open automatically. You still have to push. Live and learn.
Once Jerry's dinner was delivered, I popped down to the kitchen and put mine in the microwave so we could actually have dinner together. We even shared desserts. His peach cobbler was a delightful topping on the yummy cheesecake our generous neighbor had included in the feast she delivered.
We generally lead a very quiet life. A typcial day has us arriving home from work around the same time many evenings. We then prepare our dinner together and talk about our day. We typically eat our dinner in front of the TV, watching something we had recorded with the TIVO. I guess we tried to have as much of a normal evening as we could. We talked about our day while waiting for the dinner cart. We didn't watch the TV while eating (a nice change!) but we did turn it on after dinner. Boy, we sure were missing the TIVO!
Overall, we spent a nice, quiet evening. It was nearly normal except for the fact that my husband smelled a lot like creamed corn and he actually fell asleep during a mystery! The smell is a side effect of the chemical (?) used to store/freeze the stem cells. Jerry can fill you in on the names of the various meds, etc. It really makes my head spin.
Jerry was so soundly asleep, he didn't even stir when I kissed him goodnight and left for the day. He'd had quite a full day with meds, meals, more meds and more meals. He did spend 25 minutes on the stationary bike they have on the ward. Even worked up a good sweat. On my to bring next time list is workout clothes. Somethings, blessfully, never change.
Off to dreamland for me. Tomorrow is Friday (thank God!) and I do want to go in early so that I won't feel so guilty when I leave a tad early.
I still cannot thank everyone enough for all the well wishes and prayers on our behalf. I feel we are blanketed with love from many marvelous people. We are indeed blessed.
Wednesday, November 28, 2007
D-1
It's the day after the chemo and the day before the actual transplant. Overall I feel fine, I had a headache for awhile this morning...finally I asked for some tylenol, knowing they wouldn't give me anything like aspirin. New set of rules around here; no tylenol either since it would mask a fever. They're very watchful of fevers since that'd be an early sign of infection. Instead, they give oxycodone! At least it was a small one. Later I had a little nausea but, when I mentioned it, they gave me Ativan. It's like magic. ;-)
Backing up a little, last night I barely slept. Between being in a new place, with some strange drug running through my veins, and a thermostat that seemed to have a mind of its own, it was challenging. Around 6am, I was awake and decided to wait for the morning ritual of blood being drawn around 7am. Well, that never happened...it seems they do it around midnight and I forgot it. Oh yeah, when I mentioned the thermostat to the nurse, she told me that several others complained about the rooms being too hot last night.
I found that I have choices for my meals! With breakfast this morning (which wasn't bad, but plain), I had a sheet to choose tomorrow's meals from. In place of the inevitable biscuit or toast, I'm getting a bagel with cream cheese! There's also a phone number to call and order a 3pm snack, today I ordered a sandwich, orange and a soda. I'd better start losing my appetite soon or I'll be putting on more than just fluid weight.
The rest of the day I sat around doing puzzles, all kinds but mostly word puzzles of one sort or another. I forgot to bring pencils so Sudoku would be a challenge. The other kinds are either easy enough or there's room to write your guesses real small until you firm them up.
And of course, no word from HR. Officially I'm on medical leave so can't do any work. However, I pop in and out of my email every so often just to see if they miss me. I know they do but I also know that I work with a great bunch of people who can do anything.
An interesting coincidence popped up yesterday in the Admissions office. The woman who did my paperwork has a cousin who's married to a Lipsky in Marietta. To make it even more spooky, her father passed away in March from Amyloidosis. Apparently, it went mis/undiagnosed for quite awhile. He went from refereeing basketball games to having trouble walking...in 18 months...and nobody knew why. He had major heart issues from it, probably avoidable if they caught it sooner. They couldn't do the "high-dosage" chemo I'm getting so he died while he was being treated the milder way. Very sad. At the same time, it's another little glimmer of just how much I've got to be grateful for. Without the early diagnosis, it could have been me.
I have an interesting evening planned. In about an hour, they'll bring my evening pills and hook me up for an anti-nausea drug IV, "ondansetron" sounds more like some machine that makes people start dancing, right? It's trade name is Zofran" which doesn't sound nearly as fun.
That's it for tonight. As time goes on, I'm sure to run out of describing boring routines. For now, I want to get these down for me...so I can remember everything that happens, the good and the bad. So far, nothing really bad.
One last thing, Alice had her own treatment today. A second epidural steroid shot for her problem disc. A friend drove her to and from Snellville for it. Another friend brought her what sounds like quite a dinner, Waldorf salad, a Texas something caserole, fresh broccoli, and get this...even cheesecake! Is she a friend or what?
Well friends, thanks for being interested enough to check in on us now and then. Those little comments and emails mean a lot...please keep them coming.
Backing up a little, last night I barely slept. Between being in a new place, with some strange drug running through my veins, and a thermostat that seemed to have a mind of its own, it was challenging. Around 6am, I was awake and decided to wait for the morning ritual of blood being drawn around 7am. Well, that never happened...it seems they do it around midnight and I forgot it. Oh yeah, when I mentioned the thermostat to the nurse, she told me that several others complained about the rooms being too hot last night.
I found that I have choices for my meals! With breakfast this morning (which wasn't bad, but plain), I had a sheet to choose tomorrow's meals from. In place of the inevitable biscuit or toast, I'm getting a bagel with cream cheese! There's also a phone number to call and order a 3pm snack, today I ordered a sandwich, orange and a soda. I'd better start losing my appetite soon or I'll be putting on more than just fluid weight.
The rest of the day I sat around doing puzzles, all kinds but mostly word puzzles of one sort or another. I forgot to bring pencils so Sudoku would be a challenge. The other kinds are either easy enough or there's room to write your guesses real small until you firm them up.
And of course, no word from HR. Officially I'm on medical leave so can't do any work. However, I pop in and out of my email every so often just to see if they miss me. I know they do but I also know that I work with a great bunch of people who can do anything.
An interesting coincidence popped up yesterday in the Admissions office. The woman who did my paperwork has a cousin who's married to a Lipsky in Marietta. To make it even more spooky, her father passed away in March from Amyloidosis. Apparently, it went mis/undiagnosed for quite awhile. He went from refereeing basketball games to having trouble walking...in 18 months...and nobody knew why. He had major heart issues from it, probably avoidable if they caught it sooner. They couldn't do the "high-dosage" chemo I'm getting so he died while he was being treated the milder way. Very sad. At the same time, it's another little glimmer of just how much I've got to be grateful for. Without the early diagnosis, it could have been me.
I have an interesting evening planned. In about an hour, they'll bring my evening pills and hook me up for an anti-nausea drug IV, "ondansetron" sounds more like some machine that makes people start dancing, right? It's trade name is Zofran" which doesn't sound nearly as fun.
That's it for tonight. As time goes on, I'm sure to run out of describing boring routines. For now, I want to get these down for me...so I can remember everything that happens, the good and the bad. So far, nothing really bad.
One last thing, Alice had her own treatment today. A second epidural steroid shot for her problem disc. A friend drove her to and from Snellville for it. Another friend brought her what sounds like quite a dinner, Waldorf salad, a Texas something caserole, fresh broccoli, and get this...even cheesecake! Is she a friend or what?
Well friends, thanks for being interested enough to check in on us now and then. Those little comments and emails mean a lot...please keep them coming.
November 27...
It's day-2 today. That means it's two days before I get my stem cells back, actually half of them will be kept in reserve so that, if they fail to 'engraft', they can try again.
To back up a few days...Saturday, Nov 24, I came to the clinic for a shot of Kepivance, a drug that does funky things to the lining of your mouth and throat. This is to reduce the mouth sores the chemo will cause. Sunday and Monday I got the same shot.
Today, I got checked into the hospital. Pretty uneventful until 10 pm when they hooked me up to an iv machine with an antibiotic...
It's now 12:30 am. I stopped typing when the nurse came in carrying my chemo. One big iv bag with about a year's worth. I was handed two cups of ice and told to keep my mouth full of ice while the chemo's going in. When it was done, I finished a little more than 3 cupsful. This is another part of minimizing mouth sores. The ice causes the blood vessels to constrict, reducing the blood supply and the amount of chemo in my mouth tissues. It took about an hour...about halfway through, they brought me a sandwich (i mentioned I was hungry a little earlier).
After the chemo was done, I ate the sandwich. The label said chicken salad but my mouth was so numb from the ice, it could have been anything.
A few minutes ago, they drew some blood. I'm told they won't be back until 7am so it's time to call it a night...what a day.�
To back up a few days...Saturday, Nov 24, I came to the clinic for a shot of Kepivance, a drug that does funky things to the lining of your mouth and throat. This is to reduce the mouth sores the chemo will cause. Sunday and Monday I got the same shot.
Today, I got checked into the hospital. Pretty uneventful until 10 pm when they hooked me up to an iv machine with an antibiotic...
It's now 12:30 am. I stopped typing when the nurse came in carrying my chemo. One big iv bag with about a year's worth. I was handed two cups of ice and told to keep my mouth full of ice while the chemo's going in. When it was done, I finished a little more than 3 cupsful. This is another part of minimizing mouth sores. The ice causes the blood vessels to constrict, reducing the blood supply and the amount of chemo in my mouth tissues. It took about an hour...about halfway through, they brought me a sandwich (i mentioned I was hungry a little earlier).
After the chemo was done, I ate the sandwich. The label said chicken salad but my mouth was so numb from the ice, it could have been anything.
A few minutes ago, they drew some blood. I'm told they won't be back until 7am so it's time to call it a night...what a day.�
Tuesday, November 27, 2007
Next phase of the adventure
Today was another hurry up and wait day. Initially we'd been told to come to admissions around 10 in the morning. Happily, we got a call suggesting we would be more comfortable waiting at home until Jerry's room was ready. It was more comfortable, but it didn't make the waiting any easier!
Finally, a bit after 4 in the afternoon, Jerry was admitted and we were shown to his room. The room is great. It's nice and big and it's a corner room so we have quite a nice view.
We met a number of the staff and found them each to be quite friendly and helpful.
Today is chemo day, but it is not scheduled until 10 p.m! I had hoped to be with him during the chemo treatment, but I'll be asleep by then as I have an early morning doctor appointment of my own. I'm going for a second epidural shot of steroids in my lower back as treatment for a bulging disk. Just one adventure after another!
I can never say thank you too often for all of the prayers and well wishes. If I weren't so darned grateful, I might be embarrassed by our riches!
More as our stories unfold!
Finally, a bit after 4 in the afternoon, Jerry was admitted and we were shown to his room. The room is great. It's nice and big and it's a corner room so we have quite a nice view.
We met a number of the staff and found them each to be quite friendly and helpful.
Today is chemo day, but it is not scheduled until 10 p.m! I had hoped to be with him during the chemo treatment, but I'll be asleep by then as I have an early morning doctor appointment of my own. I'm going for a second epidural shot of steroids in my lower back as treatment for a bulging disk. Just one adventure after another!
I can never say thank you too often for all of the prayers and well wishes. If I weren't so darned grateful, I might be embarrassed by our riches!
More as our stories unfold!
Monday, November 19, 2007
The Whirlwind
Wow...another 3 weeks have gone by without me writing anything here. I swear it seems like just yesterday...but so much has happened.
When I last wrote something down, I was waiting for a call back from the nephrologist. They returned my second call, after another two day wait. I was told to take two pills, one morning and another early afternoon, instead of just one in the morning. Been there, done that. Then they said take two every morning and another two early afternoon. With that dosage, things have stopped getting worse...Finally! Oh yeah, and I'm in the market for a new nephrologist...anybody know one? ;-)
Around the same time, my coordinator at the hospital called my pharmacist to order the self-injectable growth hormone. They quoted her a price of $6,000 for my co-pay! A call to the insurance company's 'case worker' was useless. She told me that I can submit the $6,000 and be reimbursed for 80%; that still leaves $1200 out of MY pocket. We worked it out without using the insurance company's "pharmacy" plan; going to the hospital every morning for two shots put it on the "medical plan" rather than the "pharmacy plan". Saved some big bucks there! However, I was sort of looking forward to my next Red Cross blood donation when I could say yes to their age-old question, "Have you ever taken self-injected drugs?"
We started the shots on a Friday morning. By Saturday afternoon, I felt like I had no energy, felt achy all over. Generally I felt like I had the flu...just like they said. Some hip and sternum pain (where we have most of our bone marrow). I filled their pain killer prescription but was able to get by with Tylenol. This sort of goes against my Life Lesson #237 but other drugs did the trick so I guess it's okay.
The following Monday, I had my port put in. It's officially called a tri-lumen Hickman catheter and gives them 3 places to connect to my blood system...attached right up to my heart. They come out near the front of my shoulder and just dangle there, sometimes I can hear them clink together. It's weird. There's daily maintenance for it as well as a bandage change every 2-3 days or when it gets wet.
Having it put in was interesting. They got me in this X-ray & CT scanner on my back. Got everything covered and I hear the surgeon chatting with someone. I said something but don't remember what...it was basically that they should wait until I'm under to have their little chat. Good thing I said it because they thought I was already out! I know I got a second shot then and thought that was it. I was told afterward that it took three shots of Versed to put me under.
My wife has already described everything through Tuesday so I won't bore you with another description of the same stuff. Suffice it to say that it's been the most unusual time of my life.
So, we finish up the stem cell collection in record time and I figured that I'm off for the week, right? Nope. Got a call from Sarah, the coordinator Wednesday saying that I've got to come in Friday afternoon to sign "consents". Anybody who's gone for just about any procedure knows what this is all about...it's where they tell you anything and everything that could possibly ever happen to you as a result of this. When they say "informed consents", they mean just that. I think it said I might get hit by a truck due to this. They told me about things that might happen 7-10 years from now! I may have left out that we did something similar for the catheter implant as well as the stem cell collection.
That afternoon, I found out that I've got one more series of shots before Chemo day or, as they put it, Day -2...that is two days before stem cell infusion. Yup Saturday, Sunday and Monday after Thanksgiving, I get some sort of shots that'll make the lining of my mouth thicken up a lot. That's to ease any mouth sores that might be caused by the chemo. Lucky me.
Oh yeah, and I'm told that 60% of people who go through this will get shingles. If you've ever had Chicken Pox, the virus that caused it is still hiding in your body somewhere...weakened but waiting. So when my immune system slows/shuts down, it'll cause shingles.
Enough of that stuff...
I'm still discussing medical leave with the HR department. So far, with the existing paperwork, I will not be allowed to work while I'm out. The doc, Sarah and I are working on some more specific wording since HR seems to take things a bit too literally. I WILL not be shut out of the project I've already put a year into...it goes live early next year and I'll be there for it.
At the rate I've been going, my next update might be from the hospital.
To everyone, have a great Thanksgiving, We had ours last weekend before we knew the schedule. Now it seems we're going to another feast this Thursday! Such a deal!
As my wife said, thank you all for your good wishes and prayers.
Bikenut
When I last wrote something down, I was waiting for a call back from the nephrologist. They returned my second call, after another two day wait. I was told to take two pills, one morning and another early afternoon, instead of just one in the morning. Been there, done that. Then they said take two every morning and another two early afternoon. With that dosage, things have stopped getting worse...Finally! Oh yeah, and I'm in the market for a new nephrologist...anybody know one? ;-)
Around the same time, my coordinator at the hospital called my pharmacist to order the self-injectable growth hormone. They quoted her a price of $6,000 for my co-pay! A call to the insurance company's 'case worker' was useless. She told me that I can submit the $6,000 and be reimbursed for 80%; that still leaves $1200 out of MY pocket. We worked it out without using the insurance company's "pharmacy" plan; going to the hospital every morning for two shots put it on the "medical plan" rather than the "pharmacy plan". Saved some big bucks there! However, I was sort of looking forward to my next Red Cross blood donation when I could say yes to their age-old question, "Have you ever taken self-injected drugs?"
We started the shots on a Friday morning. By Saturday afternoon, I felt like I had no energy, felt achy all over. Generally I felt like I had the flu...just like they said. Some hip and sternum pain (where we have most of our bone marrow). I filled their pain killer prescription but was able to get by with Tylenol. This sort of goes against my Life Lesson #237 but other drugs did the trick so I guess it's okay.
The following Monday, I had my port put in. It's officially called a tri-lumen Hickman catheter and gives them 3 places to connect to my blood system...attached right up to my heart. They come out near the front of my shoulder and just dangle there, sometimes I can hear them clink together. It's weird. There's daily maintenance for it as well as a bandage change every 2-3 days or when it gets wet.
Having it put in was interesting. They got me in this X-ray & CT scanner on my back. Got everything covered and I hear the surgeon chatting with someone. I said something but don't remember what...it was basically that they should wait until I'm under to have their little chat. Good thing I said it because they thought I was already out! I know I got a second shot then and thought that was it. I was told afterward that it took three shots of Versed to put me under.
My wife has already described everything through Tuesday so I won't bore you with another description of the same stuff. Suffice it to say that it's been the most unusual time of my life.
So, we finish up the stem cell collection in record time and I figured that I'm off for the week, right? Nope. Got a call from Sarah, the coordinator Wednesday saying that I've got to come in Friday afternoon to sign "consents". Anybody who's gone for just about any procedure knows what this is all about...it's where they tell you anything and everything that could possibly ever happen to you as a result of this. When they say "informed consents", they mean just that. I think it said I might get hit by a truck due to this. They told me about things that might happen 7-10 years from now! I may have left out that we did something similar for the catheter implant as well as the stem cell collection.
That afternoon, I found out that I've got one more series of shots before Chemo day or, as they put it, Day -2...that is two days before stem cell infusion. Yup Saturday, Sunday and Monday after Thanksgiving, I get some sort of shots that'll make the lining of my mouth thicken up a lot. That's to ease any mouth sores that might be caused by the chemo. Lucky me.
Oh yeah, and I'm told that 60% of people who go through this will get shingles. If you've ever had Chicken Pox, the virus that caused it is still hiding in your body somewhere...weakened but waiting. So when my immune system slows/shuts down, it'll cause shingles.
Enough of that stuff...
I'm still discussing medical leave with the HR department. So far, with the existing paperwork, I will not be allowed to work while I'm out. The doc, Sarah and I are working on some more specific wording since HR seems to take things a bit too literally. I WILL not be shut out of the project I've already put a year into...it goes live early next year and I'll be there for it.
At the rate I've been going, my next update might be from the hospital.
To everyone, have a great Thanksgiving, We had ours last weekend before we knew the schedule. Now it seems we're going to another feast this Thursday! Such a deal!
As my wife said, thank you all for your good wishes and prayers.
Bikenut
Thursday, November 15, 2007
Lots of prep
Hello all,
Bikenut's wife here. I've never attempted this before, but those of you who know me know that I love to talk, so how difficult can blogging be, right?
First and foremost, I know I speak for both of us when I say a big THANK YOU for all of your thoughts and prayers. I cannot tell you just how much that means to me. You all know I am a really corn ball, so it won't surprise to hear me say how wonderfully hugged I feel each time one of you asks how we are doing.
I have now experienced the hurry up and wait of medical care. The "hurry up" was mostly of my making, but the waiting is the norm, not the exception. On Monday we arrived quite early (7 a.m.) for Jerry to have lab work and growth hormone shots done before having his Hickman catheter surgically placed. The lab work and shots were both done in the Winship Center clinic, ground floor. The surgery was done in the radiology something department in the hospital which we got to by traveling through a rather long tunnel.
It was fascinating to watch as the crew arrived for work and got started. It's such a different environment from the one I work in, yet it really is similar. We have people to help and paperwork to shuffle to make that happen. Jerry, I'm sure, will fill in all the technical aspects of what was done. I'm thrilled that I remember the thingie is called a Hickman catheter!
On Tuesday, we again reported early, but not quite as early. Heck we almost got to sleep in as we didn't need to be there until 7:30. This time we went to the 6th floor of the hospital. Betsy, our very own nurse for the occasion, hooked Jerry up to this bizarre looking machine that somehow magically drew the white blood cells from his blood and returned the rest to him. Betsy was quite pleased that the bag was filling with a creamy rose colored substance, which indicated to her that there were plenty of stem cells in the bag. We found out later that the doc said he'd be happy with 6 million; Jerry produced 10 million in just one sitting!
On Wednesday, we really got to be lazy. We didn't have to be there until 7:45! Jerry again had lab work done, which is much easier for the techs now that he has the Hickman catheter, and he had the dressing changed over the entrance of it since he got it wet in the shower. Later, after more waiting (surprise!) I was shown how to flush the tubes of his Hickman catheter and how to change the dressing. Not exactly how I expected to be spending the holiday season, but heck, I'm always open to a new challenge!
We now have a schedule of events. Jerry will be admitted to the hospital and given his chemo treatment on Tuesday, November 27th. He will have a day of rest and then receive the stem cell transplant on Thursday, November 29th. As you might note, this is AFTER Thanksgiving, so we didn't need to have it early. But we did and it was fun and I'm glad we did it when we did. Now we can just kick back for R&R for the 4 day holiday weekend!
Okay, I think that brings you up to date on my impressions of what has been happening this past week. Stay tuned for the real deal from my Handsome Husband!
Bikenut's wife here. I've never attempted this before, but those of you who know me know that I love to talk, so how difficult can blogging be, right?
First and foremost, I know I speak for both of us when I say a big THANK YOU for all of your thoughts and prayers. I cannot tell you just how much that means to me. You all know I am a really corn ball, so it won't surprise to hear me say how wonderfully hugged I feel each time one of you asks how we are doing.
I have now experienced the hurry up and wait of medical care. The "hurry up" was mostly of my making, but the waiting is the norm, not the exception. On Monday we arrived quite early (7 a.m.) for Jerry to have lab work and growth hormone shots done before having his Hickman catheter surgically placed. The lab work and shots were both done in the Winship Center clinic, ground floor. The surgery was done in the radiology something department in the hospital which we got to by traveling through a rather long tunnel.
It was fascinating to watch as the crew arrived for work and got started. It's such a different environment from the one I work in, yet it really is similar. We have people to help and paperwork to shuffle to make that happen. Jerry, I'm sure, will fill in all the technical aspects of what was done. I'm thrilled that I remember the thingie is called a Hickman catheter!
On Tuesday, we again reported early, but not quite as early. Heck we almost got to sleep in as we didn't need to be there until 7:30. This time we went to the 6th floor of the hospital. Betsy, our very own nurse for the occasion, hooked Jerry up to this bizarre looking machine that somehow magically drew the white blood cells from his blood and returned the rest to him. Betsy was quite pleased that the bag was filling with a creamy rose colored substance, which indicated to her that there were plenty of stem cells in the bag. We found out later that the doc said he'd be happy with 6 million; Jerry produced 10 million in just one sitting!
On Wednesday, we really got to be lazy. We didn't have to be there until 7:45! Jerry again had lab work done, which is much easier for the techs now that he has the Hickman catheter, and he had the dressing changed over the entrance of it since he got it wet in the shower. Later, after more waiting (surprise!) I was shown how to flush the tubes of his Hickman catheter and how to change the dressing. Not exactly how I expected to be spending the holiday season, but heck, I'm always open to a new challenge!
We now have a schedule of events. Jerry will be admitted to the hospital and given his chemo treatment on Tuesday, November 27th. He will have a day of rest and then receive the stem cell transplant on Thursday, November 29th. As you might note, this is AFTER Thanksgiving, so we didn't need to have it early. But we did and it was fun and I'm glad we did it when we did. Now we can just kick back for R&R for the 4 day holiday weekend!
Okay, I think that brings you up to date on my impressions of what has been happening this past week. Stay tuned for the real deal from my Handsome Husband!
Wednesday, October 31, 2007
Another week of waiting...
It's been more than a week since I've written. Not much has changed; I'm still unsure when the chemo and hospital stay begin. That sort of put life on hold...including thanksgiving.
Last week, I got switched to a different pill for the edema. 40 mg of Lasix is supposed to be stronger than what I was taking for my Meniere's. That doesn't seem to be the case. I've gained lots more weight, all in fluid retention I think/hope. My blood pressure is way up; usually 110/65, it was 133/85 the other day. A call to the nephrologist has again gone unreturned for a day; hopefully they call back today with something stronger. I'm swelling all over now, not just my feet and ankles. Of course, the added girth must be fluid, right?
Last Friday, I had a tooth pulled for this. Other than wisdom teeth, this was a first. I had some gum trouble more than 10 years ago but was able to keep all my teeth. This one, a molar, had less bone and more tooth showing so, when it got sensitive to cold, it became an infection threat and had to go before they wipe out my immune system. Some of you may remember Lewis Grizzard; he had a tooth infection that traveled to his heart's pig valve and killed him. Knowing that, it's easier to accept the loss of a tooth. After all this is done, I'll get an implant for it. For now, it really feels funny to be able to stick my tongue between two teeth back there.
This past Saturday & Sunday, I sat around...a lot. I'm getting tired easier now. I'm also getting tired of the waiting. To be honest, it sucks. I'm ready to get this show on the road...the sooner it starts, the sooner it ends!
Even though the doc told me I can work while in the hospital, I'm having a time getting our HR dept. to understand. The official policy doesn't cover someone who's fine...just a little weak and confined to a mostly sterile ward. We got past the 'you will not work while on sick leave' to 'the company can have no demands or expectations while on leave'. I don't even want to call it 'leave'. Now the assigned social worker (yup, got one of those of the team) is working on a note for them. We'll see how that all falls out over the next few weeks. I just know I'll go stir-crazy if I can't work.
My wife, Alice, is one incredible woman. Several people have said they'd be going nuts if their husband was going through this. Unless you know Alice, you'd never know she was going through something.
She loves Thanksgiving and looks forward to it every year; it's an opportunity to have lots of people over. This stuff isn't going to stop her. Always a very determined woman, she's decided that this year Thanksgiving would be on Nov. 10th instead. Most of our regulars have changed their schedules and will be here. I'll be on the growth hormone but should be fine...maybe even a bigger appetite than usual;-). Just in case, Alice is prepared to do it all without my help. Yup, if I want to, I can just sit back and watch everybody else work while I lay back and relax. Wonder if I can just fake it:-).
That's it for now...things to hope for in the next few days:
A new diuretic prescription that'll have me losing LOTS of weight
A shipment from Amazon with some books and music to help pass the time at the hospital.
A MASSAGE on Thursday!!! I should mention that I'm addicted to my massages. 90 minutes every 3 weeks is absolutely wonderful. I highly recommend it to everybody. (but I will not give my masseuse's name out. I did that once and she got so busy, I couldn't get any appointments anymore).
Last week, I got switched to a different pill for the edema. 40 mg of Lasix is supposed to be stronger than what I was taking for my Meniere's. That doesn't seem to be the case. I've gained lots more weight, all in fluid retention I think/hope. My blood pressure is way up; usually 110/65, it was 133/85 the other day. A call to the nephrologist has again gone unreturned for a day; hopefully they call back today with something stronger. I'm swelling all over now, not just my feet and ankles. Of course, the added girth must be fluid, right?
Last Friday, I had a tooth pulled for this. Other than wisdom teeth, this was a first. I had some gum trouble more than 10 years ago but was able to keep all my teeth. This one, a molar, had less bone and more tooth showing so, when it got sensitive to cold, it became an infection threat and had to go before they wipe out my immune system. Some of you may remember Lewis Grizzard; he had a tooth infection that traveled to his heart's pig valve and killed him. Knowing that, it's easier to accept the loss of a tooth. After all this is done, I'll get an implant for it. For now, it really feels funny to be able to stick my tongue between two teeth back there.
This past Saturday & Sunday, I sat around...a lot. I'm getting tired easier now. I'm also getting tired of the waiting. To be honest, it sucks. I'm ready to get this show on the road...the sooner it starts, the sooner it ends!
Even though the doc told me I can work while in the hospital, I'm having a time getting our HR dept. to understand. The official policy doesn't cover someone who's fine...just a little weak and confined to a mostly sterile ward. We got past the 'you will not work while on sick leave' to 'the company can have no demands or expectations while on leave'. I don't even want to call it 'leave'. Now the assigned social worker (yup, got one of those of the team) is working on a note for them. We'll see how that all falls out over the next few weeks. I just know I'll go stir-crazy if I can't work.
My wife, Alice, is one incredible woman. Several people have said they'd be going nuts if their husband was going through this. Unless you know Alice, you'd never know she was going through something.
She loves Thanksgiving and looks forward to it every year; it's an opportunity to have lots of people over. This stuff isn't going to stop her. Always a very determined woman, she's decided that this year Thanksgiving would be on Nov. 10th instead. Most of our regulars have changed their schedules and will be here. I'll be on the growth hormone but should be fine...maybe even a bigger appetite than usual;-). Just in case, Alice is prepared to do it all without my help. Yup, if I want to, I can just sit back and watch everybody else work while I lay back and relax. Wonder if I can just fake it:-).
That's it for now...things to hope for in the next few days:
A new diuretic prescription that'll have me losing LOTS of weight
A shipment from Amazon with some books and music to help pass the time at the hospital.
A MASSAGE on Thursday!!! I should mention that I'm addicted to my massages. 90 minutes every 3 weeks is absolutely wonderful. I highly recommend it to everybody. (but I will not give my masseuse's name out. I did that once and she got so busy, I couldn't get any appointments anymore).
Monday, October 22, 2007
After the Evals
Thursday, Oct 18th:
The day after the two evaluations, I went to my dentist to have a temperature-sensitive tooth looked at. I also found out that I needed a dental signoff before the treatments could begin. Another half day at work, half day at a doctor....getting to be a bad habit.
The dentist decided that the tooth should go and I get referred to Emory's oral surgery center for the extraction. On top of that, he x-ray'ed ALL my teeth to see if there's anything else going on. Lucky for me, they all look good.
Thursday, I call Emory for an appt. The phone is answered quickly but I'm told it'll take 5 minutes for a real person to answer. After 10 minutes, the Emory commercials end and the phone rings...and rings...and rings...etc. Patiently, I wait another 5 minutes and then hang up. The second time, I'm told it's only a 2 minute wait...at the end of which the phone rings...and rings....until I hang up again.
A note to Sarah, the "transplant coordinator" and all-around go-to person gets answered early friday morning. It turns out that Emory's dental center closes at 4...I called at 4:10! So why can't their voicemail say that:-(.
Friday, Oct 19th:
So Sarah contacts them and is told they're booked until late November..too late to be done in time. Back to the dentist for another referral...
He calls them and is told that, if I talk with Laurie, they'll squeeze me in. I look at the clock and it's now 4:05. At least this time I know better than to even try calling until Monday.
After work Friday, we headed to our favorite weekend getaway near Callaway Gardens. What great timing; we made these plans a year ago...an annual picnic with friends we've made through a b&b over the past few years.
We all stayed up late playing "nines", an almost mindless card game that's become a tradition here at Magnolia Hall. Lots of jokes and laughter surround the game...exactly what I need.
Saturday, Oct 20th:
The next morning, over coffee, we find that one of the guests was taken to the hospital with chest pains and trouble breathing overnight. But she's back now and joins us for breakfast, albeit a little late. Turns out it was probably an anxiety attack. But it also highlights just how fragile life can be. Anything can happen at any time with no warning. I realize just how fortunate I truly am to have caught this disease so early.
Saturday, the weather is gorgeous and the picnic is pretty good. A local couple throw this every year for a few thousand of their best friends...being guests at the B&B qualifies us. Great barbecued chicken and ribs. Corn on a cob cooked in their husks...the husks get peeled back and used as handles. And the dessert table is about 15 feet long, every inch of which is covered with homemade goodies. As usual, we will all make reservations at the B&B for next year before the weekend ends.
After the picnic, everyone seems pretty wiped out. Some are chatting on the porch; I came inside to put my swollen feet and ankles up for awhile...the edema has been getting worse and I hope to go on a stronger diuretic on Monday to help (and maybe I'll be able to fit into my shoes again).
For dinner, we've got reservations for 12 people at a little hole in the wall bar/restaurant where they have fantastic food and pool tables; what a combination, huh. I ate very well that evening and I know I'll sleep well tonight.
Sunday, October 21st:
Another wonderful breakfast followed by a trip home. I ran a few errands and then fell asleep in a chair...not something I do very often.
One thing that, looking back, I've left out. When we got to the B & B, we discovered that our room was upstairs...a very nice suite of rooms. Unfortunately, it's at the top of a single staircase that's 24 steps high. I got to the top and was winded. That really surprised me. Looking back, I've also noticed that by the end of a typical work day, I'm tired when I get home. Again, a surprise. I had been in pretty good shape so to watch my strength begin going away is a little depressing. At least I know we're going to fix this. And I suppose it'll help me get ready for being weakened by the chemo.
Monday, October 22nd:
This morning, I was able to work out the tooth extraction with Laurie from the Emory dental clinic. We're on for Friday, the 26th. To make things easier, they're going to do it with only a local anesthetic. That means I can drive to/from it by myself. One more obstacle hurdled successfully. Of course, I'm ignoring life lesson #237 but I don't always learn from my mistakes.
Now I'm waiting for a return call from my nephrologist...again. My feet and ankles are swollen. I really wish I took his Lasix prescription when I saw him.
The day after the two evaluations, I went to my dentist to have a temperature-sensitive tooth looked at. I also found out that I needed a dental signoff before the treatments could begin. Another half day at work, half day at a doctor....getting to be a bad habit.
The dentist decided that the tooth should go and I get referred to Emory's oral surgery center for the extraction. On top of that, he x-ray'ed ALL my teeth to see if there's anything else going on. Lucky for me, they all look good.
Thursday, I call Emory for an appt. The phone is answered quickly but I'm told it'll take 5 minutes for a real person to answer. After 10 minutes, the Emory commercials end and the phone rings...and rings...and rings...etc. Patiently, I wait another 5 minutes and then hang up. The second time, I'm told it's only a 2 minute wait...at the end of which the phone rings...and rings....until I hang up again.
A note to Sarah, the "transplant coordinator" and all-around go-to person gets answered early friday morning. It turns out that Emory's dental center closes at 4...I called at 4:10! So why can't their voicemail say that:-(.
Friday, Oct 19th:
So Sarah contacts them and is told they're booked until late November..too late to be done in time. Back to the dentist for another referral...
He calls them and is told that, if I talk with Laurie, they'll squeeze me in. I look at the clock and it's now 4:05. At least this time I know better than to even try calling until Monday.
After work Friday, we headed to our favorite weekend getaway near Callaway Gardens. What great timing; we made these plans a year ago...an annual picnic with friends we've made through a b&b over the past few years.
We all stayed up late playing "nines", an almost mindless card game that's become a tradition here at Magnolia Hall. Lots of jokes and laughter surround the game...exactly what I need.
Saturday, Oct 20th:
The next morning, over coffee, we find that one of the guests was taken to the hospital with chest pains and trouble breathing overnight. But she's back now and joins us for breakfast, albeit a little late. Turns out it was probably an anxiety attack. But it also highlights just how fragile life can be. Anything can happen at any time with no warning. I realize just how fortunate I truly am to have caught this disease so early.
Saturday, the weather is gorgeous and the picnic is pretty good. A local couple throw this every year for a few thousand of their best friends...being guests at the B&B qualifies us. Great barbecued chicken and ribs. Corn on a cob cooked in their husks...the husks get peeled back and used as handles. And the dessert table is about 15 feet long, every inch of which is covered with homemade goodies. As usual, we will all make reservations at the B&B for next year before the weekend ends.
After the picnic, everyone seems pretty wiped out. Some are chatting on the porch; I came inside to put my swollen feet and ankles up for awhile...the edema has been getting worse and I hope to go on a stronger diuretic on Monday to help (and maybe I'll be able to fit into my shoes again).
For dinner, we've got reservations for 12 people at a little hole in the wall bar/restaurant where they have fantastic food and pool tables; what a combination, huh. I ate very well that evening and I know I'll sleep well tonight.
Sunday, October 21st:
Another wonderful breakfast followed by a trip home. I ran a few errands and then fell asleep in a chair...not something I do very often.
One thing that, looking back, I've left out. When we got to the B & B, we discovered that our room was upstairs...a very nice suite of rooms. Unfortunately, it's at the top of a single staircase that's 24 steps high. I got to the top and was winded. That really surprised me. Looking back, I've also noticed that by the end of a typical work day, I'm tired when I get home. Again, a surprise. I had been in pretty good shape so to watch my strength begin going away is a little depressing. At least I know we're going to fix this. And I suppose it'll help me get ready for being weakened by the chemo.
Monday, October 22nd:
This morning, I was able to work out the tooth extraction with Laurie from the Emory dental clinic. We're on for Friday, the 26th. To make things easier, they're going to do it with only a local anesthetic. That means I can drive to/from it by myself. One more obstacle hurdled successfully. Of course, I'm ignoring life lesson #237 but I don't always learn from my mistakes.
Now I'm waiting for a return call from my nephrologist...again. My feet and ankles are swollen. I really wish I took his Lasix prescription when I saw him.
Wednesday, October 17, 2007
The Fun Begins
Well, it's been a few days since the first/last post. I kept telling myself "I've got to finish up the history before I start the ongoing posts".
Today I realized that things are going so fast that I'll never catch up. So, I'll give up on the history, unless I remember something that's relevant.
Since the last post, the insurance company gave approval for the next step, two days days of testing and orientation.
Yesterday, I started the process. 9am until 3pm, I was interviewed, taught how to give myself injections of growth hormone and how to clean the three-headed catheter thing they'll plug into a vein for easy access; it'll be my buddy for the next few months. I had an ekg, echocardiogram, TWENTY tubes of blood taken for testing. To top it all off, a 90 minute talk with a shrink. Whew...I was wiped out after all that.
Today, another 9am start. This was a shorter day, since I've already had a bone marrow biopsy. An hour class on the hemapheresis (blood separating) machine that'll extract my stem cells from my blood and return the rest of the blood to me. A "Pulmonary Function Test" followed, where I impressed the tech with my "exercise-enhanced" lungs. I got to lie down after that while they took x-rays of my entire body, from head to toes including arms, and several angles of each.
I got my schedule for the next few weeks and have an idea of when things will happen.
Assuming the insurance company and others review the test results and I'm still a go, I'll start giving myself growth-hormone shots on November 9th.
On November 12th, they'll knock me out and put in the central line (three-lead venous catheter). Starting November 13th, they start collecting stem cells...4-5 hours a day for about 2 days, sometimes more, sometimes less) until they have enough.
Soon after that, I go into the hospital's ward for compromised immune system patients. I get a single large dose of chemotherapy drugs. Two days after that, they give me back my stem cells, whose job is now to regrow my immune system from scratch.
Oh yeah, in the meantime, my kidney doc's partner (who thinks he's G-d and that I'm HIS patient) left a message to call his office. I did yesterday but he hasn't returned my call yet. And he wonders why I don't like him ;-)
Well, that's it for now. Hope I haven't bored you too much.
Jerry
Today I realized that things are going so fast that I'll never catch up. So, I'll give up on the history, unless I remember something that's relevant.
Since the last post, the insurance company gave approval for the next step, two days days of testing and orientation.
Yesterday, I started the process. 9am until 3pm, I was interviewed, taught how to give myself injections of growth hormone and how to clean the three-headed catheter thing they'll plug into a vein for easy access; it'll be my buddy for the next few months. I had an ekg, echocardiogram, TWENTY tubes of blood taken for testing. To top it all off, a 90 minute talk with a shrink. Whew...I was wiped out after all that.
Today, another 9am start. This was a shorter day, since I've already had a bone marrow biopsy. An hour class on the hemapheresis (blood separating) machine that'll extract my stem cells from my blood and return the rest of the blood to me. A "Pulmonary Function Test" followed, where I impressed the tech with my "exercise-enhanced" lungs. I got to lie down after that while they took x-rays of my entire body, from head to toes including arms, and several angles of each.
I got my schedule for the next few weeks and have an idea of when things will happen.
Assuming the insurance company and others review the test results and I'm still a go, I'll start giving myself growth-hormone shots on November 9th.
On November 12th, they'll knock me out and put in the central line (three-lead venous catheter). Starting November 13th, they start collecting stem cells...4-5 hours a day for about 2 days, sometimes more, sometimes less) until they have enough.
Soon after that, I go into the hospital's ward for compromised immune system patients. I get a single large dose of chemotherapy drugs. Two days after that, they give me back my stem cells, whose job is now to regrow my immune system from scratch.
Oh yeah, in the meantime, my kidney doc's partner (who thinks he's G-d and that I'm HIS patient) left a message to call his office. I did yesterday but he hasn't returned my call yet. And he wonders why I don't like him ;-)
Well, that's it for now. Hope I haven't bored you too much.
Jerry
Friday, October 12, 2007
How I got here
Where do I start? Where did it all begin? Did it start during the MS150 in October '06 when I had my first ever leg cramps while riding my bike? The ongoing cramps since then make me think so.
In February '07, I had 4 days of "unexplained fever" in the 102-104 range. Was that the first sign? In April, I had another bout of fever just like the first. That's when I first went to a doctor. I guess my experiences begin then.
I went to my regular GP. She did some blood tests and found that my blood protein was low. An abdominal ultrasound was next, to rule out any kidney issues. It came back negative so I thought I was in the clear and this would all go away.
She referred me to a hematologist. I called her office and was shocked to hear the phone answered "Atlanta Cancer Care". I asked if I had the right number and was told that it's common for oncologists to also do hematology. This eased my mind. I never even considered that I might have a life-threatening disease.
More lab work was done, more complex tests than earlier. These spotted a "monoclonal light-chain". Of course, I had no idea what that meant but a bone marrow and/or kidney biopsy were discussed. Since the bone marrow was easier to collect, we decided to do that first. I asked what they'd be looking for. Amyloidosis or multiple myeloma, I was told. I knew that a myeloma was a form of cancer so got a "little" nervous.
As luck would have it, the bone marrow biopsy showed neither. So, I went back to being "fat, dumb and happy" again.
A trip to the nephrologist (kidney specialist) was next. There I was told the kidney damage could have easily been caused by taking too much Aleve and other nsaids. So, I stopped my arthritis meds and thought everything would go away. Nope, wrong again.
The nephrologist said it was time for the kidney biopsy. Okay, I'd been through a bone marrow biopsy and it didn't hurt...the bone marrow biopsy had to be worse than the kidney since they had to go through bone as well as some flesh. Wrong yet again.
It turns out that the kidney biopsy requires a "23 hour" hospital stay. That's what they do when your insurance won't cover a full day but it's serious enough that they want to keep an eye on you for awhile.
Into the cat scan room we go. They get me all settled and a nice doctor introduces herself and says she's going to give me the knockout drugs. Well, everything I'd read said these are done with local anesthesia; I'm a MAN so I told her I'd skip the sedative and go with just the local. She looked at me strangely.
Life lesson # 237: If someone offers you drugs before inflicting pain on you, don't EVER say "no".
Everything goes fine and I get back to the hospital room around 4:30, starving. Ten minutes later, lunch shows up...fried chicken and a few sides. I was hungry enough that it tasted good! I finished that meal and a short time later, another lunch comes through the door. Needless to say, I eat that as well.
It's now about 5:30 and dinner time. Yet another meal; I eat it and I'm no longer hungry:-).
Just as that tray is removed, yet another dinner walks in the door! One of the few times in my life I turned down a 'free' meal.
The next morning arrives with breakfast...cereal with milk and french toast. Being lactose intolerant means never drinking real milk...and french toast is usually made with milk as well. When I reminded them that I can't eat this, they offered to have grits and eggs brought up. I ate those and, still hungry, I ate the cereal without the milk.
Before leaving, I was told to call the nephrology office in two weeks to follow up. The appointment was made a few days later. Again, I assumed they'd find nothing and life would go on normally.
About a week later, the hematologist's office (I still don't think of her as an oncologist) calls and wants to see me in a few days. Naive me, I think she misses me and wants to chat. Yeah, right...it never occurred to me that this is how they give bad news.
In her office, she sits me down and explains that I've been diagnosed with amyloidosis and the typical treatments involve chemotherapy! Huh? Where'd that come from? I can't have anything serious wrong with me. I've been taking great care of myself for at least 10 years...and in '99, I began bicycle riding. I'm healthy as a horse; I can get on a bike and ride 100 miles...at least I can ride until the cramps begin.
In February '07, I had 4 days of "unexplained fever" in the 102-104 range. Was that the first sign? In April, I had another bout of fever just like the first. That's when I first went to a doctor. I guess my experiences begin then.
I went to my regular GP. She did some blood tests and found that my blood protein was low. An abdominal ultrasound was next, to rule out any kidney issues. It came back negative so I thought I was in the clear and this would all go away.
She referred me to a hematologist. I called her office and was shocked to hear the phone answered "Atlanta Cancer Care". I asked if I had the right number and was told that it's common for oncologists to also do hematology. This eased my mind. I never even considered that I might have a life-threatening disease.
More lab work was done, more complex tests than earlier. These spotted a "monoclonal light-chain". Of course, I had no idea what that meant but a bone marrow and/or kidney biopsy were discussed. Since the bone marrow was easier to collect, we decided to do that first. I asked what they'd be looking for. Amyloidosis or multiple myeloma, I was told. I knew that a myeloma was a form of cancer so got a "little" nervous.
As luck would have it, the bone marrow biopsy showed neither. So, I went back to being "fat, dumb and happy" again.
A trip to the nephrologist (kidney specialist) was next. There I was told the kidney damage could have easily been caused by taking too much Aleve and other nsaids. So, I stopped my arthritis meds and thought everything would go away. Nope, wrong again.
The nephrologist said it was time for the kidney biopsy. Okay, I'd been through a bone marrow biopsy and it didn't hurt...the bone marrow biopsy had to be worse than the kidney since they had to go through bone as well as some flesh. Wrong yet again.
It turns out that the kidney biopsy requires a "23 hour" hospital stay. That's what they do when your insurance won't cover a full day but it's serious enough that they want to keep an eye on you for awhile.
My first hospital stay
I got to the hospital at 11am for a 1pm start time...which got pushed to 3pm. Meanwhile, no food since midnight has got me just a little hungry. At first it was to be done using sonography...they got me into the room and THEN decided to do it with a cat scan instead; no explanation was given.Into the cat scan room we go. They get me all settled and a nice doctor introduces herself and says she's going to give me the knockout drugs. Well, everything I'd read said these are done with local anesthesia; I'm a MAN so I told her I'd skip the sedative and go with just the local. She looked at me strangely.
Life lesson # 237: If someone offers you drugs before inflicting pain on you, don't EVER say "no".
Everything goes fine and I get back to the hospital room around 4:30, starving. Ten minutes later, lunch shows up...fried chicken and a few sides. I was hungry enough that it tasted good! I finished that meal and a short time later, another lunch comes through the door. Needless to say, I eat that as well.
It's now about 5:30 and dinner time. Yet another meal; I eat it and I'm no longer hungry:-).
Just as that tray is removed, yet another dinner walks in the door! One of the few times in my life I turned down a 'free' meal.
The next morning arrives with breakfast...cereal with milk and french toast. Being lactose intolerant means never drinking real milk...and french toast is usually made with milk as well. When I reminded them that I can't eat this, they offered to have grits and eggs brought up. I ate those and, still hungry, I ate the cereal without the milk.
Before leaving, I was told to call the nephrology office in two weeks to follow up. The appointment was made a few days later. Again, I assumed they'd find nothing and life would go on normally.
After the hospital
About a week later, the hematologist's office (I still don't think of her as an oncologist) calls and wants to see me in a few days. Naive me, I think she misses me and wants to chat. Yeah, right...it never occurred to me that this is how they give bad news.
In her office, she sits me down and explains that I've been diagnosed with amyloidosis and the typical treatments involve chemotherapy! Huh? Where'd that come from? I can't have anything serious wrong with me. I've been taking great care of myself for at least 10 years...and in '99, I began bicycle riding. I'm healthy as a horse; I can get on a bike and ride 100 miles...at least I can ride until the cramps begin.
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