A View From the Field
Journal January 2001
Finally, January is over. I think I will just carve this month out of the year and start 2001 tomorrow.
What a month it has been! God willing, I won't ever have to go through anything that nasty again! At least I'm ending pretty much on an up note.
The Melchers left this morning. I was sorry to see them go - I like them, and they were a great help - but is is nice to be alone with the kitties again. Buster misses them already. He got used to all the attention real easily.
I went back to bed after they left, and never did get dressed. My stomach was bothering me all day, for some reason, and I saw no reason for getting dressed at 2:30 in the afternoon. Everything else seems to be getting better, though. My temperature has stayed under 99º, and the hematomas look better every day, although the one on my thigh is still nasty because of the peeling.
So I have chronicled my entire bone marrow transplant. It's probably just as well that I did, since somebody may ask me questions about it sometime, and I certainly can't remember a lot of the details. I find the things that stick in my mind are the little annoying things, not the big nasty ones, things like the itch and the food and the lasix. I have to go back and read the entries to realize I was pretty sick from the day I checked in until the 15th. If the journal says so, I guess I was - I really don't remember.
I'm not sure how much use my record will be to anybody else, either. It was nasty and I was sick, but compared to most of the people in unit 8A, I had a really easy time of it. I wouldn't want to imply that anybody else going through the same thing would find it so easy. At the same time, it might give someone an idea of what to expect, which I didn't have. It didn't bother me - I knew what the schedule was and I'd had enough chemo before to have some idea what that would be like.
I am just very glad that January 2001 is over with, the transplant is over with, and, I hope, soon my after effects will be over with, too.
Today I got to actually drive, a mile or so! I had to go to the bank and mail some letters, so I put a mile on rental car. I had just returned when the dealership called to say that my car was ready. All they did was charge the battery, but when I started it to put it in the garage, it seemed to be behaving itself better than it was when I got it back the last time. We are just waiting, now for GM to do something about the buy-back. I faxed them my title and registration today, so something is moving.
Driving felt great, even in the Grand Am. I don't think I'm quite up to the expressway in the rush hour yet, but I don't feel nervous or intimidated behind the wheel. I know one time when I was on medical leave for six or seven weeks, I was a nervous wreck for a week or so when I started to drive again. Evidently a few more years behind the wheel, and a little more care in driving, have made a difference. I don't think I was driving slowly and I don't think I was driving down the middle of the street, although one jerk did and gave me a finger. Then he pulled in front of me so he was straddling the lane marker and kind of wavering back and forth until he got into the left turn lane. Funny how often the guys who get so upset with other drivers are the worst ones of all.
So my drive, plus getting my car back, were the big news the day and has me all tired out.
I will continue this through the end of the month, but then unless there is a milestone or I think of something I need to say, I don't think I will try to write an entry every day after that. I mean, how many ways can you say, nothing happened, I don't feel very good, but things are progressing?
The hematomas do seem to be healing, and it looks like the antibiotics are gaining the upper hand. The red areas aren't as warm, and my temperature has stayed under control all day. That's good, because I woke up this morning with a stiff neck at the back of my head from lying in bed. Not that I accomplished much, but I did get dressed.
I've also eaten a little more, in small amounts, and I think I'm getting the drill down. No eggs for breakfast, and meals about every 2 hours all day long. Keep it full and it won't bite you. This is the routine I got used to in '98, and although that wasn't so severe or so prolonged, I have it figured out, except exactly what to lay in to snack on. That's a hard one. Will have to put my head together.
All of this is the boring, every day stuff that isn't fun to write about or read. Isn't it nice that that's all I have to report!
I haven't added the latest pictures of the house to the site, because I haven't been down in the basement, where the scanners are, for more than five minutes. It's still too cold down there to spend any time, and no matter which way I do it, scanning pictures takes a lot of time. It's still on my list, and I'll get to it as soon as I feel better. Put on my down parka and sherpa lined mittens...
My temperature plummeted last night, spiked a little this afternoon and dropped back. I think that will continue to happen until the hematomas go away and I get a little better. As a result, I don't feel very good, and frankly, since I'm at home, I don't feel any pressure to get dressed or anything. So I napped for part of the afternoon again. See no reason not to. I will continue to watch my temp (go up and down, probably), but unless it goes up and stays, I don't see any reason to panic.
I don't feel very robust, but I don't have anything to do, either, so why push it?
It amazes me that January is as much as over. Parts of it seemed so long, feels good to see that all that is done. I know the months pass quickly, especially as I get older, but if they're going to do that, I have other ideas about how to pass the time.
Since I told GMC I needed a loaner, I guess I'm going to have to take the car out and drive around in circles tomorrow, just to put a few miles on it. It was more of a psychological thing, of course, but it would be sort of embarrassing to turn it in with just the mileage between my house and the dealership on it.
The new car, plus the house, plus trying to keep my temperature down, will keep me adequately busy for a few days anyway.
This is a nice slow time. I feel the need for some hibernation after all that has gone on in the past six weeks.
Well, I am sitting here waiting for a telephone call. Arthur and Mary Ann are at some mall or other.
I didn't sleep good last night, because I couldn't sleep on my left side because the lumps were so sore. I need to be able to sleep part of the night on each side, and I couldn't. So after breakfast and some embroidery, I went back to bed. When I got up, my temperature was 100º, which isn't good but not alarming, and after breakfast and things like that, it went down somewhat. I still didn't feel very good, so I just went back to bed. Slept some, talked on the phone some, just dosed some. Arthur and Mary Ann left around 3:30, I think, and I dropped off to sleep. When I woke up, about 4:30, I decided it was time to take my afternoon vitals (although I haven't hauled out the blood pressure machine yet) Imagine my surprise when it read 101.8º!
That's a little bit over our 100.5º cut-off. I waited a few minutes and took it again and it was 101.6º. Going down but still 'way too high. So I reluctantly put in a call to the doctor's office, and I'm now waiting for the on-call doctor to call me back.
Since I'm not a normal person, I don't know what normal men do on Saturday afternoon, so I don't have any idea how long it will take to hear back. In the meantime, I am hoping my temperature will continue to come down - real fast. The last place in the world I want to be is a hospital! However, I can't do much in any case until Arthur and Mary Ann get back, so I guess I will post this and take my temperature again and lie down again.
DC is right beside me muttering - he knows something isn't right.
I guess I should have known this whole recovery thing wouldn't be fee sailing, but I am disappointed, especially if I end up in the hospital!
A quiet day today mostly, but I like it that way. Apparently I lit a fire under Diane and she passed it on to the GMC dealership and GM. They came and (just barely) started the truck this afternoon and left me with a flaming red Grand Am (the Flexible Flyer, I call it). They hope to have the truck back to me by early next week, but Diane thinks there may be some resolution to my lemon law claim by then. They are going to buy it back, and the only question now is the cost basis they use to determine what they will give me. I've already got the specs nailed down for the new one. I am not going to let one lemon turn me off from a vehicle I really like very much, when it works. I'm sure not every Yukon is a lemon - to the contrary, in fact, I've heard they have very few problems over all. When it works, the only cars I've ever driven I've liked better were the Corvettes. It is a fun vehicle, and there aren't many places I can't go, with reasonable care. I certainly know, lemon or no, I wouldn't have wanted to have had to drive back to Ann Arbor on December 13 without it!
Even though I have an awful time getting into, and especially out of, the Grand Am, I can tell you it felt wonderful to sit behind the wheel and put my foot on the pedal, even just driving it into the garage. Now I'm really free. All I have to do is get Arthur's car out of the driveway and I can go anywhere I want... Freedom is a set of wheels. I'm part of the moving human race again.
I got to do some embroidery this morning - this is pretty boring stuff, I'm just starting a bunch of cedar sprigs and I'm tired of it already - and it really makes a difference to me. I find it relaxing and refreshing and invigorating, a great way to get ready for the rest of the day.
Getting ready for the rest of the day - or the night - is turning into a real chore. My skin has suddenly turned so dry it is cracking and flaking in spots, and I suddenly had horrible dry, flaky wrinkles around my mouth, and I still have the itch, so after I bathe or before I dress, I have to put one cream here, one cream there, a lotion someplace else, check all the spots for progress, inspect the hematomas (the one on my arm now is about 6" across and looks like a fried egg except with a red white and a blue yolk. Really ugly). It takes longer to slather myself up than it does to bathe. And of course, Dr. Lehman and the crew here have to take up the slack and be sure all this stuff heals up properly.
I've gotten to the point where the stomach needs to be kept full or it hurts, so I am going to have to attend to that. That, to me is a step forward. So long as I don't overfill it, at least I won't have so much trouble getting nourishment. Filled it full of Chinese tonight (didn't take much), and now it's gurgling contentedly.
One gets used to tending one's body in normal mode - I have to watch what I eat or I'd weigh 500 pounds - and, in my case anyway, not paying much particular attention to it, and when it needs attention, getting used to nurturing it carefully is very hard. I will do my best, because I want to get well as soon as possible, but it will certainly feel good when I can go back to normal mode again.
I feel sorry for the folks, and heaven knows there are many of them, who get stuck in this inward-looking mode and never manage to get out of it. I know it is easy, if you have a chronic disease, to get hung up on your innards, but not only is it boring to everybody around you, it's very bad for your own mental health.
I got a couple more calls from Rainbow's End today, and they almost have the craft room cabinets installed, except for one piece that's missing, and the electrician was wiring in the ceiling fans. They are coming along really well, and it seems certain everything will be done except for the last details when I am ready to move in. How I wish I were there! How I will work to get well so when the time comes there's no question that I can go!
Now the slow, boring part begins. After a trip to see the doctor here and a stop at the drug store, I came home, had a little food, and took a nap. Rehabilitation will be slow, as I know, and this time I don't have a nice three-week stay in Copper Harbor to help me get my feet back on the ground. Wish I could...they installed the cabinets in the craft room today.
I can tell that, even though I don't feel much worse, I'm weaker than I was after the chemo in '98. This was of shorter duration but much more intense. So I am taking it as easy as I can. Doing the stairs is good exercise, and just being up and around the house will help. Now if I can just get my wheels...
The nurse and the doctor kept looking at me like they could hardly believe how good I look, but I've always said if I get all pale and gray or yellow and there is no color in my lips, you might as well start digging a hole in the ground. I have to be a lot sicker than I have been before I lose my color, although it certainly not what it was in September. This is both good and bad. It's nice not to look like I'm on my last legs, but it sometimes leads people to think I'm not as sick as I am. Having roses in my cheeks doesn't help me to stand up for 15 or 20 minutes at a time.
I don't remember if I mentioned that I developed two big knots under my skin, one on my upper left arm that was so sore they couldn't use the blood pressure cuff on it, and one on my upper thigh. I thought at the time they were probably hematomas, which is a little capillary that bursts under the skin and bleeds into the muscle. This happened when my platelets crashed, and it's not unusual. Since I got home, however, the blood has been coming to the surface and making a nice red and purple bruise. That in itself is understandable, but it feels warm to the touch, which worried the doctor, so I am now on antibiotics, with strict instructions to monitor my temperature, and a warning that if it goes over 100.4º, I'll be in the hospital - probably here, which is better than having to go back to U of M, but the last thing I want to see is the inside of another hospital, so I am working on willing my temperature to stay under 100º. That worked in the hospital, so maybe it will here, too. The big thing about these bruises is that they are very sore, and they both are in places where I lie on them. Hasn't seemed to keep me awake, though.
I think it's sort of dirty that the U of M people got to do all the sexy things with the chemo and the transplant and stuff, then when I got better enough to have these minor problems, like the itch and the bruises and the monitoring of my blood counts (which they said were very good), they turned me back over to the local doctors and let them deal with it. However, Dr. Lehman shook my hand and seemed very pleased that I'd done so well. He can be a wise ass, but I think that's his cover for a very concerned, caring physician.
Tomorrow we may get to do some wash (I mean, little things mean a lot!) and one of these days I'll get to sit in the sewing room amid all my stuff and enjoy that. I didn't get time to do any embroidery today, and I'm going to have to see that that doesn't happen very often! The trouble with having people in the house is that inevitably one's normal routine gets disrupted. Not that I'm complaining - it's great to have them here when I need them, and a lot of things are getting done that wouldn't get done otherwise. But I have to confess it will be good to be alone again. By next week I should have a little more stamina and I'll be able to do a few things I'd just rather not have to do now.
So another quiet day, but I am treasuring each one, since I'm home and on the mend.
It still feels good, but it's going to be a long road. I took some anti-itch medicine last night and slept much better, but I could have gone back to bed after breakfast. I remember feeling this way in '98, except probably not so extremely. I am just totally wiped out, and it will take time to work back into such shape as I was in when it started. Fortunately, I don't have anything else much to do. I really have a very comfortable bed, and I am enjoying every minute I spend in it. I can always embroider or knit, and I will have to do enough that I'll work into it.
I find that doing more has caused my stomach to get rather rocky (another thing I remember) so I am having to try to figure out a way to fill it frequently with small amounts of food. That seems to help.
Arthur and Mary Ann arrived today, and they went shopping and stopped at one of our local carry-out places and got some really good food, including some wonderful potato soup. That went down really well - onions and parmesan cheese and all. So it's not that I necessarily need bland food, just small amounts. I'll figure it out.
I did managed to get the beds in the front room cleared off (that's where we unloaded Monday night), and I sorted out a lot of the catalogs and magazines to be recycled. The entire 6' coffee table in the living room was covered about 2' deep with the stuff, which I hadn't had time to do before I left. It was pretty quiet exercise, although I had a little trouble getting off the table. My legs are always a little weak, and they're really weak now. Doing the stairs will help.
It's interesting that already when I look back, what I principally remember is the little things - the food, the toilet paper, the heating system, and all the other petty annoyances. I know I was sick, because the journal says so, but I think when I wrote those things I did a memory dump and wiped the internal storage clean. That's probably a good thing. If I need to remember what happened, it's documented, both online and on the computer where I'm composing this, and I don't need to clutter my mind with it. I started to do the same thing in '98 (hand written) and abandoned it after a while, so I can remember some of those things a lot better than I can remember what happened two weeks ago. It's an interesting phenomenon. Having promised to keep the journal has turned out to be more of a therapeutic activity than I realized it would be. I have pretty close to a perfect memory for things that concern me, or I did, and having a place to unload some of that stuff will be more and more useful as I get older.
So I am going to kick back and relax and recuperate and think positive thoughts. I'm hoping that in a couple of weeks I'll feel up to returning to church and bible class, and then choir, but I won't push it. I certainly miss all those things, but everyone understands, and it will all come with time. I have plenty of that.
It feels so good.
It still feels good.
It was so wonderful to sleep in my own bed last night, snuggled against my sheepskin pad with a warm cat or two at the end of the bed, and with room to spread out my arms. I didn't sleep as well as I might have, because in the middle of the night I got the itch. Today I had to ask Debbie to get the anti-itch pill prescription filled. That should help.
I discovered that my "night sweats" apparently weren't that at all; it was the crazy heating system in the hospital. I slept all night last night without one episode of waking up drenched in sweat...and I can't believe one day could make that much difference! I got a little warm this morning at 6 when the heat kicked in, but nothing like I'd been experiencing before. So I finally crawled out of bed at close to 10am. I will try to get to bed a little earlier tonight.
I don't feel bad, but I certainly am weak. Going up stairs is a chore, and anytime I do anything, I have to sit down a lot. I can't put a lot into my stomach at one time, but I need to try to keep it evenly filled. When I get empty inside, I feel a little queasy. I probably didn't have that problem in the hospital because they were feeding me anti-emetics through the IV all the time I was there. From experience I know that will just take time. I am going to have to try to think up some more stuff to eat, and I am going to try to begin to eat a regular lunch. It's hard, because I'm probably not going to be awake long enough for a while to actually get in three meals. Of course, I've been "starving" myself for three weeks, so under the best of circumstances I would be having to treat my tummy gently.
I had a nice long conversation with Philippe today, and things are moving right along. Since the weather has been pretty open, they have been working steadily, and most of the cabinets, except for the craft room, are installed, there is only about 6' left of the fireplace to face with stone, and the trim is going on (I knew that from Phoebe's pictures). It sounds like another 6 weeks or so will pretty much wrap things up until I get there, unless the weather is so bad it closes the road. I doubt it will, if he was able to keep it open in December!
So that is nice to know. It gives me warm fuzzies to know the house will be there when I'm able to get there.
I don't think I'm down, but now that the first euphoria of getting out is over, I see clearly that I have a ways to go before I am up to doing much at all. It doesn't surprise me, but in the hospital setting, there was no way I could really assess myself. I still don't think I am much, if any, weaker than I was after the last chemo, and it will pass. Living in a vertical house will help, because everything is on some other floor.
I had a nice long conversation with Shirley during the writing of this. I think things get a little lonesome in CH at this time of year. She was renting nicely, though, which is good news. I guess it's been a real up and down winter so far, and they certainly need a good one for a change.
One of the real pieces of news, so far as I'm concerned, is that there are cardinals in CH! I had resigned myself to not having cardinals when I was there, and they are one of my favorite birds. I knew they had been moving north for a long time, so it was only a matter of time before they crossed the lift bridge. Now they have. Nice.
So I will wrap this up, still feeling all warm and happy inside, and ready to face my rehabilitation. What a comforting thought!
January 22, 2001
Free at last! Free at last! What a feeling!
Not that it was all smooth sailing. They pumped me full of platelets all morning long so that when they removed the catheter I wouldn't bleed - and I didn't. The catheter came out at 1:30, but I had to sit quietly for an hour to make sure it would clot over - that was a big tube! It stings a little at times, but it hasn't bled at all, so far as I know.
So that was fine, and it felt wonderful to walk around like a human being, not tethered to an IV pole.
At about 3:00, Debbie called to tell me that she was caught in some kind of a traffic jam on I94, and had gone about a mile in 40 minutes. She was only in Dearborn. So I waited, almost finished the first half of the coat of many colors, and tried to be patient. She certainly didn't waste time after she got beyond the problem (overturned gravel truck), but it took 3 trips to get me and all my stuff to her car, so it was almost 5:30 before we were finally on the road. I can't express my feelings when we turned out of the medical center. And when we turned onto I94, and got off at Moross, and turned onto Champine... Oh my.
Buster was very glad to see me, but DC had to punish me by going off for a while before he finally gave in and welcomed me home. He is now sitting in "his" spot at the end of the bed, within hand reach as I type, with his eyes closed and his purr on. Buster has been crawling all over me all evening, but he has now gone off, because I wasn't paying any attention to him when he sat down on the desk. We are three happy campers. Times like this I wish I could purr.
Debbie and I shared a pasty (Pasty Central Pasty) and a little nip of Jack Daniels, in honor of the occasion, and as soon as I post this, I will try to remember what it is like to get ready for bed in my own house. I am tired; I haven't slept well at the hospital, but I suspect I'll be catching up soon.
This has been an intense three weeks, and it will take some reflection to put it all in perspective. The one nagging thought I keep having is, I pray it was all worth it, that this will put the lymphoma in permanent remission, and except for occasional doctor visits, I can get on with the living of my life. It would be depressing to have gone through all this and not have it have the desired effect. Of course, the only way I'll really know that is when I die of something else, but if it only gives me my 20 years, I'll be content.
Rainbow's End awaits - Phoebe's pictures arrived today while I was waiting, and it is just as beautiful as I knew it would be. As soon as I can manage, I will scan in a few of the shots for the gallery.
Free at last!
Well, the night before freedom. They didn't take out the catheter today; they will do it tomorrow, I hope in the morning. I was informed that I am malnourished, which gave me the opening to issue a diatribe against the food in this place. If they had any doubts I'd be better off at home... I have been hungry, but so much of the food is totally inedible that I opted to go hungry. So today, I actually drank a can of warm Boost. It is supposed to be chilled, so it wasn't wonderful, but by the time I got it, it didn't matter. Almost anything in my freezer will taste good, even a TV dinner!
I spent part of the afternoon getting organized and packed up. There are still some things I have to do tomorrow, because I haven't touched the stuff in the bathroom or the things in the nightstand, but most of the suitcases are packed. After I finished the second bird, I packed up the cross stitch, and when I finish with the computer, I will pack it. I suppose I will have enough time to do this tomorrow, but one never can tell, so I thought I'd do what I could.
Since Voravit was by himself today, I didn't get to ask the questions on my list (which I seem to have lost momentarily), about what restrictions there will be on what I can do and eat, etc. I suppose somebody will check me out tomorrow and answer all that. It's a big question, because all the literature they gave me pertains to people having donor bone marrow transplants, and since I had an autologous (self) stem cell transplant, I already know most of the restrictions won't apply. The question is, which ones do?
I expect tomorrow will be an exciting, exhausting day.
T+10. Well, the home day appears to be Monday. They would have let me out tomorrow, I think, but I want to be sure the catheter is gone before I go, so I am willing to endure another day. Also, it will probably take me that long to get packed up and sorted out and all. My white cells and neutriphils were both up today, and I understand that they will give me platelets before they take the catheter out, just to ensure it will clot. It's not clear yet whether they will do it here, or I will have to go back to the place where they put it in. I would just as soon they did it here. We'll see.
Pastor Boelter cam to visit this afternoon and we had a very nice visit, and a little private service with communion, which left me feeling good. He is a nice man.
Otherwise, it was about as dull a day as I've had. I embroidered most of the day, but I don't think I'll get the second bird completely done before I go home. The radio was off most of the afternoon, because in these parts, if you like classical music but you don't like the opera the Met is performing, you're sort of out of luck. I do, and I didn't, so it was quiet.
I was just looking at the piles around me. My goodness, I have my work cut out for me...
I'm going home!
T+9. A down day, but after having felt high as a kite the past two, I wasn't surprised. The heat in my room got it into its head to go up around the time I went to bed, and in the middle of the night I had to turn the thermostat down. Trouble with that is that the entire play of the dial (from 55 to 90) is about an inch, so moving it just barely enough to see can cause a change of several degrees.
My temperature spiked around 8pm, and an indication that I'm beginning to get an immune system is that I could feel it, and I felt bad. So I tossed and turned (as much as one can in a hospital bed, without landing on the floor) for most of the night. The night nurse, instead of coming in at 4:30 to draw blood right after the tech who takes vitals, decided she was doing us a "favor" by waiting until after 6 - thus waking everybody up twice. Some people need a little more common sense.
They drew my blood twice because the first counts didn't square with what I'd had yesterday, but probably the very high hemoglobin count was an error. So I got more blood today. However, on the bright side, the white cells and the platelets continue to increase modestly, and tonight when Kerry came to see me, she penciled in a neutriphil count - I'm making neutriphils!
Anyway, I went back to bed and got 2 more hours of sleep until 10:30, and I felt much better afterwards. Oh, it will be good to get home!!!
It seems that if my counts continue to improve, they will indeed send me home early next week. I really do not want to leave with the Sorensen in place, however, because it is a pain to take care of and can so easily be infected, so that may delay my actual leaving. It may have to be removed surgically, in which case, I will probably spend another day in the surgical waiting room... However, I think I can impress upon Voravit my desire not to have it.
Possibly as early as tomorrow I will have a date.
Everyone I see tells me how well I'm doing, and indeed, for a drastic procedure like this one, I have had very little trouble. I don't feel any worse, and in some ways better, than I did at the end of the first chemo in 1998. What that means to me is that the sooner I can get home, the sooner I will really begin to recover. Kerry assured me that most of the restrictions mentioned in the Transplant Book will not apply to me, which is a great relief!
It's also an annoyance. The car is still in my garage, dead, and Diane is going to be out of town until Thursday, so when I get home, I will be without wheels even if I'm permitted to drive. People will just have to fetch and carry for me until we get that resolved. I couldn't protest too much when I talked to her today, because I don't know when I am going home. It may not matter. But you'd better not try to part me from my wheels for long!
What a wonderful thing, to begin to plan for being home again!
T+8. What a nice day. I awoke to the news that three of my four blood counts were UP! I needed platelets, but I understand they respond most slowly. My red cells took a big jump, and my white count, while horribly low, is higher than it's been in at least a week. I am making cells! I'm in the home stretch!
Then Dr. Voravit asked me to find out when, over the weekend or early next week, would be the most convenient time for Debbie to fetch me home. Whoooeeee! The caveat is that if I were to go home over the weekend, I'd have to come back Tuesday or Wednesday anyway to have the catheter removed. I've decided that for various reasons, I'd much rather have the catheter removed before I go home. Keeping it sterile and dry is a problem, and I'd rather not have to come right back to get it removed.
That may determine when I go. The Sorensen catheter is a quarter-inch pipe into a vein in my neck, and if my platelet count isn't really high, I could easily have a bleeding problem. So I will think good thoughts about platelets. White cells, too. My sore bottom, mouth and skin won't really start to heal until my white count, nutriphils especially, comes up.
There's also always the possibility of a setback, but it sounds like most of the team thinks that's unlikely. I am trying to continue to be good, so nothing I am doing will cause a setback.
But I'm making cells!
The posters of the house and the view have really caused comment amongst all the staff. I'm glad, in a way, that I waited to hang them, because it would have been exhausting to do all the talking about them when I wasn't feeling well.
I also learned that Voravit trained with and partnered for ten years with my neighbor, Dr. V (whose name I won't even try to spell!). I got the idea from the beginning that Voravit sort of liked me, but that certainly cements it. He was grinning a lot today. He said that Dr. V had even offered him the use of his cottage, but he'd never gone. See what he's missed?
Well, there. The worst part is over now.
T+ 7. If you read the journal before about 8 pm yesterday, you might wan to scan it again. I added a bunch of stuff after I published it the first time.
I went back to bed after breakfast, but I got up after the third person tried to come in, at 9:30. I should have stayed in bed. I felt sort of blah all day long. But after the two really good days, I'm not surprised to have a kind of down one. My white cell count finally zeroed out this morning, but the other counts are holding pretty well. I dressed, and that still feels good. I got a lot done on the second bird and the flowers around it.
When my temperature spiked last night, which it does most nights, my nurse decided she should lower the temperature in the room. I froze all night long, and I was really glad for my down comforter. I thought it was me, but when Dr. Nervi and Kerry (my Physician's Assistant) came in and said it was freezing, I decided it wasn't me, and there is no reason I have to be cold, except for the eccentricities of the heating system. If I raise the thermostat, it warms up for a while, then I get a blast of cold air. Weird, like a lot of things around here.
The only thing that has me a little concerned is that I seem to have developed a small blister on my eyelid near where the shingles were. They are just watching it for the time being, and I am on a maintenance dose of medication, so maybe it will be a false alarm. Maybe I'll start making cells soon. Even if Dr. Voravit is right and it won't happen until about day 11, I'm more than halfway there.
Debbie is coming tonight, which is kind of a shame, because I would prefer to go to bed, but she's bringing me some things I need, and I haven't seen her since Sunday. I've continued to get lots of nice cards and notes and email. I am making another resolution to try to be better about sending cards and notes than I have been. It takes a little effort, but I'm remembering again how much it means for a person to know you are thinking about her.
I finally got the two posters hung, and it is nice to be able to look up and see the view down Copper Harbor, and the front of the house. Reminds me constantly of why I'm here. Also starts lots of conversations.
I sent my Copper Harbor spies out yesterday, and I got a good report of work on the house. There was nobody there, so I'm not sure if they're still working, but some of the tile is up in the bathroom and about 2/3 of the stone is up on the fireplace. They took pictures, and I can hardly wait to see them.
So another quiet day of waiting. I guess I'd prefer that to a day full of crises...
T+6. A pretty good day, considering the location and the situation.
I didn't have as good a night as the one before. I was cold when I went to bed, but I didn't want to pull up the quilt because sometimes it makes the night sweats worse, and my hands were cold. I finally got to sleep, I think, and about 11 the aldactone cut in. It isn't coming in from the pharmacy until after 4 in the afternoon, which is a stupid time to take a diuretic. The nurses and I are trying to get it changed so I can take it in the morning. Anyway, after that was over, I started with the sweats again. All of this will eventually go away when I get some white blood cells.
I got dressed this morning, and altogether was more comfortable. I will have to use the Calmoseptine in a few more places, but it felt good to wear a bra (amazingly enough) and pants again. My feet were something of a problem, since they are so swollen, and I haven't had shoes on in two weeks, so the place where they injected my toe is tender, and I had to let out the laces as far as they would go. Shoes felt good, too, for a change.
Getting dressed left me so sweaty and tired that I didn't do much else.
Debbie called, her usual bubbly self, and we had a nice chat. Shortly afterwards, Jackie called to say there was a message from a moving company in Appleton, WI (!) that they had a shipment to deliver and couldn't get hold of anybody. That would be Philippe, and all I can guess is that he went south for the winter. So I had to scurry around, call Appleton, call Rowe Moving in Calumet, and get the delivery all arranged, I hope. It must be the bed, at long last! What excitement! I only ordered it on August 8!
The doctors didn't come until I was just about through with that, and Voravit was in a good mood, asking me about my plans for living in Copper Harbor, and what medical facilities there are up there. However, he seems to think I won't be able to start producing white cells until about day 11. I hope he's wrong and I start early - that's a long time to wait!
They have started giving me neupogen to stimulate cell growth. That's too bad - it gives me a horrible backache, and I never feel too good when I'm taking it. However, it's only a single dose, not like the doubles I was taking for the apheresis, so perhaps the reaction won't be so bad.
So I am slightly high tonight. I was really wondering if I was ever going to see that bed, or next spring I was going to have to start really hassling Pottery Barn to send back the nightstands.
I am getting fed up with this place - well, no, that's the wrong phrase. The food is uniformly terrible, except for the soup, and I am trying to start solids again. Tonight there was a piece of chicken with some kind of sauce on it that smelled and tasted so terrible I couldn't eat it. Last night, they had something they called cherry crisp, but the topping was not crisp and had some kind of off-flavor I think was supposed to be cinnamon. I love sour cherries, but I couldn't eat that.
It doesn't help that the chemo has left me with a bad taste in my mouth and something wacky with my sense of smell. I also notice that all my body excretions, including sweat, have an unusually bad, chemically odor. So slowly I am getting rid of the chemicals, but it will clearly take time.
I am still thankful that my only complaints are about the food and an occasional nurse. Things could be so much worse.
T+5. I got my after-breakfast nap this morning, until nearly 10:30, so that was nice. My counts are holding well, and I felt good again today. Dr. Voravit is the rounds leader this week, and it was good to see him. He is quite a character. My biggest problem is the chafing area at the bottom of my body and they are trying to get some extra special cream I can use. However, the real problem I have is that I haven't been dressed in two weeks, and I have been sweating profusely at the drop of a hat (or rise of a temp). Rash or no rash, unless I completely collapse over night, I intend to get dressed tomorrow. At least that will put cotton against all the parts that are now rubbing against each other. That, plus some kind of cream, should help. I know I need to start walking, and unless I can stop chafing against myself, I just won't do that, because it is too uncomfortable.
It appears that I didn't mention the irritating nurse - I must have written it in an email to somebody. Sometime between day T-1 and T+1 I had a nurse for a few hours who really ticked me off. For some reason she came over to the window side of the bed, where all my stuff is, and she said, "You might as well send this all home. You won't be doing it and it will get in our way when we're taking care of you."
I mentioned this to one of the other nurses, who said "--- goes around with a crash cart on her back". I guess so. Anyway, the next time --- was in, she seemed in a much better mood, but today she delivered the mail while I was embroidering, and she said, "Well, I guess YOU feel all right." I agreed, and she said "Good" in a tone of voice that left no doubt that so far as she was concerned, it was not good. All I can figure is that she prefers the really sick people so she can demonstrate what good nursing skills she has. I still cannot understand why a person with such an attitude would take a job in a unit like the BMT, where a positive attitude is important, especially when you are urging people to do things they don't really want to do, like get up, get dressed, and go walking. It really helps when your nurse or tech or doctor says you're doing well.
I guess I haven't mentioned attitude in this month's journal. I believe in it. The nurses I've talked to say they've seen people with terrible attitudes who did very well, but they admit that they've also seen people whose attitude has made a great difference. Especially at this time, where we are just waiting for the inevitable to happen, and all we need is time. There is nothing to do but wait, try to do what I can do, like my oral and anal maintenance, and walk, and the team can just watch me and try to make sure nothing minor turns into something major, and I am comfortable. The team may be used to it, but it is really hard on the patient. I checked in two weeks ago tomorrow, and I've been here long enough, but I know I have a week or more to go before I can go home. Being a patient patient is hard when what one is waiting for takes so long.
T+4. This is getting monotonous, but that's a good thing. My platelets went critically low overnight, so I got a transfusion early this morning, and as a result, I missed my after-breakfast nap. I have to eat shortly after breakfast is delivered (between 7:30 and 8:00) or it is cold - the oatmeal was nearly cold this morning anyway - but if I were on my own time, I probably wouldn't be getting up until after 9. So after breakfast and oral maintenance, I have been going back to sleep for an hour or so. Missed that today.
That was the extent of today's events, pretty much. It was a very dark, dull and foggy day, so finally I turned on the exam light and discovered that then I can actually see to embroider. I finished the first bird (only 8 left!). It has taken me since 12/21 to do this one, but there were a number of days when I didn't pick up a needle.
I am still doing well, according to the doctors, and I felt better today. My temperature stayed under 99.5º, which is probably why. I actually took a turn around the unit, and investigated the patient lounge, which has a fridge stocked with stuff. I didn't stay to rummage in the fridge, because there was a couple in there talking, who were obviously annoyed that I had come in. That's a public room, but maybe she is in a semi-private room.
So I wait...
T+3, and uneventful. This is the part that is hardest, waiting until something happens. There's no help for it; it just takes a minimum of 7 days for the graft to start producing. My temperature keeps going up and down - when it's up I feel pretty bad, when it's down I feel bad. I got blood today; they can replace the red cells and platelets when they go down, so at least I don't have to face the results of that. It's the white cells we have to wait for, so they are stuffing me full of antibiotics. And we wait.
Not that the day was totally uneventful. Debbie met the house cleaners at my house this morning, and apparently I will be going home to a house so clean I won't recognize it. I may not find anything, either. She cleaned out my refrigerator - an heroic task! - and I probably won't find anything in it, either. But it is nice to know there will be only a couple of weeks' worth of cat hair and dust rather than ? months worth, and there were definitely things in the fridge that needed to go.
Debbie came to visit later in the afternoon, so that was nice, and we had a nice visit. She brought the mail and some clean gowns, so I won't have to attempt a hospital gown again. What a friend she is!
So I am trying hard to be a patient patient, but it isn't easy. I don't like this place any better than any other hospital, and I don't want to be here. At least I have my cross stitch and knitting and the computer to keep me occupied.
Friday, and it's hard to believe I've been here 11 days already. Seems like forever. It's also T+2, which is good. I thought I would alter my work habits a little, and write the journal at around 4:00, then get on the net and upload it before I do the things I usually do there. It can take me quite a while to go through the email and all my favorite sites, and then I'm tired, and I still have the journal entry to write. Most of the exciting things (!?) happen either before 4 or after bedtime anyway. Good thing I did that - I just found out I go for a chest x-ray at 5:40, to return whenever!
Last night, my nose was dripping pretty heavily when I went to bed, but I got to sleep and woke up about 1:30am dripping wet and hot. I was just starting to try to cool off when the tech came in to check my vitals, and when he did, my temperature was 101ºF. They call it a neutropenic temperature spike (neutropenic - no neutriphils, the white cells that fight infection). Immediately, they drew a lot of blood from each port of the catheter, to test for infectious diseases, and started giving me two broad-spectrum antibiotics.
I think I have a slight head cold, and I haven't felt very good all day, but they tell me this is a very normal event, it could happen again, and they like it to happen early in the post-transplant time because I still have a little of my own defenses left.
The team assures me I am doing very well, they are proud of me, and they keep filling me full of lasix. They are bound and determined to get rid of the 8 or more pounds of fluid I've been carrying around for the past week. I wish them luck. I think I will have to begin my recovery before that will start to happen.
Apparently day 7 is about the very earliest the graft can begin to produce cells, with day 10 about the average. Of course, my counts won't come up at an even rate, and they will go up and down for a time. Apparently a few lucky folks have gone home on day +10, but this is apparently very unusual.
My rash has finally begun to break up a bit, although I am still bright red most places. It doesn't itch so much, except in certain places at certain times. I am now wearing a turtleneck around my neck, made of the material they use to hold dressings on burns, and it seems to be the best answer to keeping a dressing on my catheter. It will be really nice to get rid of that!
So it was another quiet day. I didn't do much because I didn't feel very good, but I did get some more embroidery done. A very nice lady from bible class, whom I hardly know at all, sent me an adorable stuffed puppy and a very nice encouraging note.
So, onward we go...
T+1 and counting. Actually, it was a very good day. I got some sleep last night (not enough, of course, but when do you in the hospital?), and I have been able to keep some semi-solid food in my stomach. All the negative people went home last night, and today's group was in a much better mood. I think the chemo is at last getting washed out of my system (washed - ha! - they've been giving me lasix like IV fluid!), and just that makes me feel better. Of course with my blood counts so low, I don't feel great, and when I do anything much I get queasy, but this is tolerable. Now if we can avoid the dread infection, or throat sores, or some other nasty, it's uphill from here.
Quite a ways uphill, as it turns out. The average time for the cells to "take" is about 10 days. I expect to start receiving transfusions of blood products tomorrow or the next day. That will cause another convulsion, because some of the nurses don't want to transfuse through the Sorensen port because of the threat of a clot (reasonable). It seems, however, that blood can be run through one of my pumps, so if they'll do it, that should solve my problem.
I have also had time to scientifically observe doings in the hospital, and I think I have a theorem to add to the Canon of Murphy's Laws:
"If an event is supposed to occur, but no time has been given for the occurrence, the event will take place at the least convenient possible time."
That is, if you know somebody is coming to visit, but you don't know when, they will come when you are on the telephone. Or, if you know two people are coming to visit, the second will come while the first is still with you. Or the doctors will arrive while you are in the bathroom. I could list other examples.
Feeling better meant that I got to do quite a bit of cross stitch today, and I took advantage, because the sun shines in my windows from almost 9am until after 3pm, and it was a sunny day. I guess that consoles me for the helicopters taking off and landing; on the other side, the view is over the Huron river, and I'm sure it's much nicer, but that faces north, so no sun. The only way to really get decent light in this room is to turn on the exam light in the ceiling and that is very bright. It looks like our sunshine is about to disappear again, however, so I may have to try indoor lighting.
I'm hoping this is not an unusually good day, although I know there will be some when I don't feel so good.
Onward and upward!
Well, today was t-day: transplant day, or "birthday", as one of the nurses called it.
It started out low. My blood counts are so low that I don't feel at all well, and any kind of exertion leaves me feeling weak and queasy. I didn't sleep well last night; my "Michigan drip" was bothering me, and I couldn't sleep on my right side, partly because of the new dressing on my catheter, and partly just because. So I didn't sleep very good again. Woke up around 1am having had an extremely vivid dream about a liverwurst and Swiss cheese sandwich on dark Russian rye. Something in me must be hungry, although it certainly isn't my stomach. I was awake for some time and just dozed for sometime more. Maybe by the time I get home, I will be used to the size of this bed, but I doubt it. I'm used to just rolling over, and if I did that here, I'd end up on the floor.
So I didn't feel good in the morning, and I had to get up before I wanted to because I actually had breakfast delivered, but they didn't put hot covers over the hot cereal. So I had to eat it before it became cold cereal.
Between Debbie's visit yesterday and the glass of Boost and ice I overturned on the floor, the window side of the room had dissolved into one jumble reaching for the ceiling (I seem to have this problem everywhere I am...), so I had to do some housekeeping. Then it was the doctors and lunch (cold soup and warm milk - yuck!), and when I tried to do a little embroidery, my eyelids wouldn't stay up.
Actually, the transplant is something of a big deal. They keep the cells frozen in nitrogen at -324º F, and they delivered them in a crock that looked like a big milk crock. After they determined that they were my cells, the bag was thawed in warmed saline. The contents were pushed into the catheter by hand (by a Physician's Assistant, which I thought was an interesting choice of person), followed by some saline to flush everything out and get as much as possible into me. Because some people react badly, there was an emergency kit on hand, they took my vitals before hand, and gave me several medications.
Not enough, as it turned out. When it first started, my face and ears got very red, then I started coughing a little, and then, just at the end, I had a very violent attack of nausea. Fortunately, there was a nurse standing by with ativan, which she injected as close to my neck as possible, and I hung on, but it was touch and go for a minute or two. I haven't tossed my cookies yet, and I really don't want to. Having a caring nurse nearby is a great help when you're trying to keep control of your innards.
I took a little rest after that, but right now I feel OK - well, as OK as one can with no white cells and shaky numbers of other blood components. It apparently takes several days for any hint that the transplant has "taken" to show up, so I expect to feel pretty lousy for a while. So far, it isn't anything worse than I went through with the chemo two years ago, but it may get worse.
I find I feel very upbeat tonight. What I've been working for is over, I'm off the ground, and it's onward and upward from here.
How things change in 24 hours. It became clear to me, about the time I was undressing to take my bath last night, that most of my rash has been caused because I was wearing a hospital gown: the only place the rash showed was where the gown had covered. It got my neck and chest first, then began to spread. I have a nasty condition on my chest. Anyway, I bathed and changed to a home-laundered flannel gown, but it was too late. Most of my body was tingly and itchy and generally so miserable I couldn't sleep. The only thing the nurses had to offer was benedryl. I don't react well to benedryl under the best of circumstances - it makes me feel bad and gives me a headache. I now know that if I get a large dose through an IV, it knocks me out completely and gives me incredibly bad nightmares. So it was not a good night.
Now I'm taking some things to help control the itching, I have some creams and things, and it feels better, but unfortunately, that plus the sensitivity of my skin caused by the chemo has caused my skin to break down around all the dressings. We will have to attack that tonight, because I have a real mess on my chest, and I'm sure they'll find the same when they change the dressing on my catheter.
They tell me they've had several cases like mine lately, so they are investigating what has changed about the way gowns are laundered. Whatever it is, if I have to wear a gown again while I'm here, I'm going to be sure it comes from the dermatology department.
Fortunately, this is a hospital, where they have experience with these things, because my blood counts are dropping off as expected, and among other things, I don't want a skin infection.
Slowly, my stomach is getting back in shape. It only cramps now when I move suddenly or pinch it, which I have experienced before. I'm still eating a liquid diet, with care, but I'm going to start adding a few solids tomorrow. The rest of that part is coming under control, slowly.
I do think perhaps the nursing staff appreciates me - or I hope so. Some poor soul has been admitted who requires lifting help to get into and out of bed,
and who needs to be sedated for every procedure. I've found it hard to understand that kind of reaction, but of course, I've never met the person. If he or she is so old or feeble that he can't move around, I wonder at the wisdom of a bone marrow transplant at all. This is not a procedure for the weak or faint of heart.
Tomorrow I get my bone marrow back, and then it is only a period of time until we find out how long it will take to re-implant itself and whether I will have any serious side effects. My white cells seem to have dropped off much faster than the others, so I see infection as the most serious threat.
I understand they bring up the marrow frozen in nitrogen, with the container in a bowl, and I asked if they had trumpets and drums and a parade to accompany it, but they don't. That was a disappointment. I've seen it - they showed it to me after the apheresis, and it isn't much to look at - just a few cc's of blood (113, to be exact). So the procedure is a nothing. I understand the preservative causes people to taste and smell funny things, but other than that, it's just something else going through the catheter.
On the other front, Debbie came today with the mail and the news. She is bound and determined that my house will be cleaned before I get home. With everything that has to be moved, I'll never find anything. But she is as stubborn as I am, and of course that is one of the things that would have gotten done if I'd been admitted tomorrow.
The picture of the back of the house came out beautifully, so I hope I will feel like doing a little decorating tomorrow. I want those posters up when I have to take to my bed.
I also seem to be about to change one of the policies of the U of M Hospital. It seems the idea was that the kind of catheter I have (called Sorensen) was only used for dialysis, so of course it couldn't be used to give blood products. The kind of catheter they usually use has smaller lines, like the line accessing a mediport. However, they are seeing more patients like me who have to have a Sorensen Catheter for the apheresis, so they are going to get the rules changed. They don't like Sorensens because they are harder to keep flowing (mine is being flushed constantly), and they pose more of a risk of infection. But the apheresis can't be done with the other kind, either, and that comes first. So I have helped change their policy.
So comes the end of day -1.
It never ceases to amaze me what a good night's sleep can do for one. Not that I will ever get used to the width of a hospital bed, and every time I turn over I have to try to slide back and forth on a flannel draw sheet. I now have all three ports accessed, so I was fooling around with little connectors in uncomfortable places all night, and I was wearing two hospital gowns which have uncomfortable lumps, but that didn't seem to keep me awake much. They left me pretty much alone, too, so that helped.
Since this is a rest day, the nurses didn't have much to do for me, but I saw a couple of other visitors - the Lutheran chaplain, and the art therapist, both of whom are very nice and stayed quite a while. I think I've managed to avoid the physical therapist for another day.
My stomach is still not under control, although I managed to get down most of a can of Boost, mixed with ice, this afternoon. I am now back to the old problem I had through most of the other chemo - a cramp that ties my stomach into knots. So I am still on a liquid diet. That makes me cold, but otherwise it hasn't bothered me.
The worst new problem is a rash over my chest and upper arms. They say that can happen from the chemo, but it may also be that I'm allergic to something they are giving me. I will mention it again tomorrow and we will see.
Apparently my blood counts are holding, so there were no new transfusions today, and why they had to access my mediport is a mystery to me. It seems, however, that every nurse I have had has her own way of doing things, and everybody's way is entirely different from everybody else's.
It is interesting to know that I am sitting here with no bone marrow at all, and doing all right. If I start not to do all right, they can fix it. I will continue to do these entries for as long as possible this week, but everybody says I will bottom out on Thursday through Saturday. If so, some days may be missed.
It will be interesting.
So that is day -2.
Day 3 is over, and it was a real zero. My stomach bothered me all day, and they couldn't give me all the meds to stop it because of the chemo I was on. That wasn't much. The drug has to be dissolved in alcohol, so it gives some people a hangover or makes them feel high, but I didn't notice it. Maybe it was because I was concentrating on my stomach.
I was very cold all day, so spent most of the day in bed with my nice comforters. I'm currently wearing two hospital gowns until I get the diarrhea under control, and that's all I'll say about that.
I'm hoping these symptoms won't last too much longer, because my blood counts are dropping nicely, thank you. I had two transfusions of red blood cells today, and I expect I will be getting something every day from now on. So I expect to feel bad, but I hope they'll be in a position to treat specific symptoms.
So in spite of the fact that the low days are yet to come, I find I am still feeling positive. At least the really nasty part of it is over - no more chemo! I will try to be a good girl and do all I can to keep well.
I had a nice chat with Shirley today, and apparently the road is still sort of open, but the front door deck is completely drifted over. How I wish I had pictures, maybe you can imagine what it looks like from this shot in November. The entire back of the house must be covered up to the windows!
Apparently, the basement door is still pretty clear, so I guess that is where they are getting in, if they are getting in.
All I hope now is that next winter is a snowy one, too.
Day 4 was a blah. I did sleep fairly well last night, which was a relief, but I still cannot get myself to eat much - it makes my stomach hurt too much. I have put myself on a full fluid diet for the next day or so, and I hope that now that the cytoxan and VP16 are over, this will slowly subside. Because of the kidney thing, they have also decided to decrease my dose of BCNU, (a broad spectrum anti-cancer agent) by 1/3. Not that I will complain. At least after tomorrow it will be over, and we can go on to the next step.
The cytoxan hit me hard today, but I rested for a while and listened to the opera - Fidelio - and generally tried to keep my stomach under control. They are infusing anti-nausea meds right now, so that should help. I never thought I'd get through this scot-free, and so far most of the symptoms have been controllable.
Most of the exercise I have been getting is walking back and forth to the bathroom, which isn't good, but I just haven't been sure enough of my stomach since my toe got better.
Debbie came yesterday afternoon, which was nice, and brought my mail, and we had a nice visit.
When she stopped at my house to get the mail, she noticed that the mullions in my front picture window were popped out...the Buster at work again. When he is feeling particularly rambunctious or contrary he will occasionally try to climb the mullions - or perhaps since he knows they pop out, he just does it to see what will happen. What has happened now is that they are sitting in the middle of the living room, since Debbie couldn't get them back in by herself. Besides that escapade, he followed her all over the house, where ever she went. Buster tries to act cool, but he was raised so gently that he doesn't know how to handle unusual circumstances. DC was sleeping on the cutting table in the craft room, his usual afternoon spot, and when Jackie came, he was sleeping on my bed. Buster is not so laid back.
Well, on to day 3.
Another interesting day in the annals. I guess I forgot to say that yesterday morning I woke up with the bunion on my right toe very sore, and by the time the doctors came, it was almost too sore to walk on. They got the rhumatologists (if this isn't spelled right, it's because it isn't in Microsoft's dictionary) in, and it turns out I have the gout. I had it for sure in '84, and now I guess a couple of the incidents I've had where I just thought my bunion had gotten irritated were gout, too. Oh, my. Since I am taking so much other stuff, they decided to inject it with steroids instead of giving me medication, and let me tell you, that was no fun. However, about 2am the steroids kicked in, and I was able to get some sleep.
They are also changing my protocol, because the urine test showed that my kidneys are not perfectly good - nothing to be worried about now, they said, but they didn't want to risk them. So they cut out the rest of the VP-16. They said because of my decreased kidney function, I had probably gotten enough out of 5 doses as most people do out of 8. It is nice to know they think ahead like that. I have also been getting an EKG every morning, and if they saw something change about that, I'm sure they'd act.
My stomach is giving me fits. I haven't been able to eat much at all, (part of it is because the food is not geared toward someone with stomach trouble) and when I tried to eat my dinner tonight, I actually had the dry heaves. Milk and things goes down all right, and so do most kinds of soup, but that's not much. Since I've been holding so much fluid, however, my weight doesn't show any drop.
I have fat feet.
The cytoxan made me very sleepy this afternoon, so I napped, and Debbie came to see me, which was nice. So I'm hoping to sleep better tonight and be ready for day 4 (they count down here).
I did sleep better last night - if you don't count getting up every 2 hours because they were giving me lasix to get out the fluid they were pumping in me. My night nurse was uncanny - every time she would come in to see if I had gotten up, I would just have gotten back in bed.
I woke up nauseated this morning, and breakfast (so-called) didn't do anything to help, so I yelled. I'm now supposed to be getting something every six hours to keep it away. It's being staged now. So I should be able to sleep better. The 24 hour collection is over, but we still have to measure everything that goes in and everything that comes out. And I didn't have such a strong reaction to the cytoxan today, probably because of the anti-nausea. It made me sleepy, as usual, but people kept coming in. I have not been hungry, and the food isn't good, but the dietician fixed me a milkshake this afternoon, which was nice.
Not much to report, except for lots of nice email from people. I have my cross stitch and my coat of many colors to knit, and my radio, where I can sometimes get the right station, but this is a boring place. All hospitals are, even with the nice staff and all that.
Well, welcome back to earth. I started out by not sleeping at all last night. I'm not sure if it was my sore shoulder, my nervousness, or the night sweats I had all night. Not a good way to start out a new day.
The VP-16 didn't bother me, but the cytoxan hit me hard. I had a couple hours of the queasiest stomach I have had through this, I wasn't hungry for dinner, and my stomach still doesn't feel good. There is stuff that can help that, but it also makes me groggy. The second VP-16 doesn't happen until 8pm. We'll see what that does. I was disappointed that I reacted so badly, after not feeling much in the stomach when I had the last cytoxan. Well, one day at a time. Part of it may be my lack of sleep. I hope so.
However, I will take one day at a time. Tomorrow I know I will get an EKG in the morning (morning starts about 4am), and I'm having to collect my urine for 24 hours, because they are still concerned about my kidney function.
What I hate most about hospitals is happening again: my whole life revolves around what goes in and what comes out. They will make me go to the bathroom every 2 hours round the clock, because they are keeping track of how much of the hydration fluid comes out. That shouldn't be a problem, with what they are pumping into me.
Anyway, it's started, and I don't feel very good already. This isn't going to be any fun at all, and all I can hope is that I bounce back fast after it's over.
For once, the day went pretty well, and there were no particular slowdowns or more than the usual waiting. The kitties knew this was the day. About 3am Buster bothered DC for a while, the turned over his water dish and went away. DC got up with me, meowed a lot, licked the butter dish, and he disappeared, too. Cats are funny that way. They knew I was going, they knew this was the day, and they know I won't be back for a while, so they went off and hid. I hope they don't freak out tonight, because Jackie isn't coming until tomorrow. She will take good care of them, so I don't have to worry about that.
It turns out that the psychologist has no special agenda at all. She is there so that if the combination of drugs I am getting cause any mental effects, she can step in to help me. I know some kinds of chemo (and prednisone) can cause depression, for example, and if that happened, or I seemed confused, she would be called in. So that was all right.
I am now ensconced in room 8112, right next to the helipad, which may be interesting during the day, but it isn't so good at night. So far as I can tell, the address here is
Sharon I. Smith
University of Michigan Medical Center
Bone Marrow Transplant Unit
1500 E. Medical Center Drive
Patient Unit 8A
Ann Arbor, MI 48109
I don't know if all six lines of that is necessary.
The phone number in my room is 734-936-8112. If you should call and the line is busy, I'm online. If you want to get hold of me, email is still best. I will try very hard to check it each day and at least do a journal entry. If I can, I will try to reply to all emails.
The afternoon wasn't very interesting, after the psychologist. There were the usual administrative things, and I must have told six people what I'm allergic to. They had to order a dinner specially, of course, and the food is no better and no worse than is usual in a hospital. The rolls and the angel food cake were pretty good. However, once the chemo starts, I probably won't feel much like eating anyway, so the quality of the food won't matter much. Since I got my dinner late, someone came in to do an EKG in the middle of it, and shortly after I got hauled down to x-ray for a chest x-ray. It's a wonder I don't glow in the dark...maybe I do? Maybe I glow in x-rays.
If I can look beyond the hospital, there is a nice view toward the horizon, and the day cleared up nicely. I think I face nearly south, so if there is sun, it will probably come in my windows. There is enough light to embroider by, which is the important thing.
The weird thing about this room is that there is no bed table in it. They encourage patients to get up and dress, but without a bed table, there isn't much of a place to eat except on the nightstand, and I haven't found a good place to use the computer yet. Right now, I am sitting on the edge of the bed, which is so high that I sort of have to cling to the keyboard with my wrists.
Now that I'm into it, I'm resigned to the whole thing. It isn't going to be fun, I am going to get sick, and I'll be pretty weak afterwards, but at least the whole thing will be over in a month or so and I'll be able to get on with recovering. In many ways that's a lot better than looking forward to six months of chemo.
This is a pretty boring entry altogether, but I will get it uploaded so everybody knows I'm here.
January 1, 2001
Well, the best laid plans, and all that... Yesterday, I had intended to do my wash, eat, and maybe have a nip of Jack Daniels, then go upstairs and put a nice, millennium-ending entry into the journal, and go to bed. Huh. I started washing rather late, had several nice long telephone calls, and finally ate dinner at about 10:30, after which I was too tired to do anything but crash.
Got to bed about 11:55, which was just when the barrage started. For those of you who have never lived in Detroit, there is a century-old (or more) tradition here that everybody who owns a working gun goes outside at about 11:55 on New Year's Eve and shoots off the gun for about 15 minutes. If you don't have a gun, but have some firecrackers, that works, too. It seems every year somebody is injured or killed by the flak. I know my great-grandfather used to do this, so it goes back a ways. I'm a little far from the action, and my windows are great insulators, so it sounded like hail falling on a tin roof, except for some very large firecrackers.
This morning, I started washing the quilts before breakfast. One is done, and the other is still in the dryer. After I finish this, I will have to start packing and throwing out. There are so many little odds and ends I need to take with me that I will have piles of piles before I'm done, I'm sure. It's good that we aren't leaving at the crack of dawn tomorrow, because some of the things I want to take are things I will use in the morning.
I'm still in a state of nervous anticipation, getting moreso all the time. The kitties know things are going to be happening soon, and they are getting clingier by the minute. While I was waiting for the second quilt to rinse, DC took a nap on my lap. I don't know that they would be happier if they were going along, though.
I had intended to take a look back at 2000, and perhaps a ways before that, because the last year of the second millennium sounds momentous, but frankly, I feel just the same today as I did yesterday, and nothing much has changed except the date on the calendar. Both computers say 2001 today, just like they should.
I would like to have spent some time yesterday with my 91 year old great aunt, because she has certainly seen more changes in her long life than anyone before her ever has. Just to name one family fact, my great-grandfather was still delivering ice in a horse-drawn cart in 1909, and going out onto the Detroit River to cut it with a hand saw all winter long. Women were still wearing ankle-length skirts, corsets and bustles. So I sit here in my jeans and flannel shirt, typing on a 700mh laptop computer. I wonder if the next century will see as much change as the last did? It's only too bad that not a lot has changed about the world situation, except that it's a lot easier to kill a lot of people than it was then. And if I'd been born a hundred years earlier, I never would have made it far enough to be contemplating a stem cell transplant.
2000 was a bumpy year, I must admit. I remember sitting at my computer on May 21, reaching up to warm my hand on my neck and feeling that huge lump. I also remember sitting in my car in June, looking at the house and feeling as happy as I ever have. I knew what the lump was, even though it hadn't been diagnosed positively yet, but I also knew that the house was a reality, and that eventually, no matter what happened in between, I'd get to live in it. And I will.