A View From the Field
Journal December 2000
The checks got written by 11:00 last night, and today I trundled out to mail them all. I got gas, and I do indeed have a slow leak in one tire. It may be from driving around the construction site up north, or it may be something else, but I won't be able to check it out. The car is getting harder to start, too. I was supposed to call my contact at GM, but her line was busy all Thursday afternoon and Friday I plain forgot. So maybe I can remember to do it Tuesday morning? That will be a hectic morning anyway, but I'll try. That car is a real pain.
I find I feel a little better today, and I'm a little more hungry, which is a good sign - I'll be feeling better before they hit me again. I am trying to plan my packing so as to have as few individual pieces as possible, but with all the craft stuff and miscellaneous things I want to take, that may be impossible. So I sat down with my lunch to look at my email and the usual websites...and I'm still here at 4:15. I really must try to do something about the front room today.
The bedspreads are in a wash basket in the hall, and last night about the time I was thinking about going to bed, the guys woke up and started romping around, and at one point I found DC in the basket on top of all the clean things, looking quite pleased with himself. Buster has never discovered the joys of full wash baskets, but DC thinks they're wonderful. When I have the dirty wash sorted and I'm in the basement washing, I can usually find him curled up on top of a load of dirty wash. I guess it smells like me. And the clean wash smells clean... Right now he is asleep in his spot at the end of the bed, which just happens to be right beside where I am sitting, so he can have his comfortable spot and be right with me. Buster usually sleeps in the spot where I have thrown back the covers, but he has gone off this afternoon. I guess he thinks I'm planted for the rest of the day. Much as I would like it...
The front room calls.
Well, I'm not going to get away without seeing the psychologist after all. I called Marian today to get an answer to Debbie's question, and in the course of conversation she noticed that I had managed to sneak out of the appointment I was supposed to have on the 13th. Oh, well. I will be interesting to see what she wants.
I find that while I don't feel bad, I don't feel like doing anything, either. This is not good, since there are certain things I need to do before I leave. Today I was supposed to write the checks for my miscellaneous charities. The basket of envelopes is sitting on my bed, it's 4:30, and I haven't even opened the checkbook. This part takes some time, so I will get at it as soon as I post this entry.
Getting a home nurse here to service my catheter was a comedy of errors, but I think it is finally sorted out. Fortunately, I called the insurance company yesterday about another matter, because they didn't know I was being admitted on the 2nd and also, home care has to be pre-certified. So I turned it all over to them. And I took delivery of the supplies needed to change the dressing and flush the ports at 7:30 last night. The nurse was very nice and very competent, however, and I have the most comfortable dressing yet. Since the line comes out of my neck at above my collar bone and just below my biopsy scar, getting it dressed right takes some skill.
The cats are still really clingy. Buster doesn't want to leave me alone--he is sitting on my lap as I type--and DC wants to be somewhere around close by, if not on me.
Not much has gone on today, and I need to start writing checks.
Yesterday turned out to be such a mixed up day that I didn't get a chance to write an entry to the journal. The apheresis was no big deal, at least for me. I was very glad for the catheter, though. There was another lady there having it done through her arm veins, and not only did it take longer, she couldn't do anything at all, and her machine kept alarming. It took about 4 hours to collect 113 cc. It did leave me feeling tired, but not terribly weary.
The nurses at the blood bank all wanted to look at me, because apparently none of them had ever seen anybody with such a high white cell count. Evidently the neupogen worked just fine, thank you!
Well! Then all hell broke loose. I had talked to Marian because my feet are swelling, and she made an appointment with Dr. Voravit. He looked at my feet - apparently they weren't swollen enough to bother with - and he looked at my catheter, and said, why take it out and put in another one on the tenth? But waiting that long makes it more likely to get infected, and I would have to learn how to flush it myself. That would be hard, since the ends are up under my ear. SO, let's admit next week!! I admit I had a period of hysterics. My mind-set was geared toward Jan. 10, which would give me some time to do some things around the house. It makes so much sense, however, that I'm going in Tuesday afternoon (Jan 2).
Then Marian called me to tell me that I was done with the apheresis: they needed 2 million cells, and I gave them 3.24 million!
I got home around 8, but I was tired and I wanted to get into my own bed. I'm still tired, and I still have a back ache, but I don't feel too bad.
So I am trying to get up enough energy to rustle around and get my things together, and get as much done around the house as I can. It's a little difficult, because I have two very clingy cats. They know things are going on and they DON'T like it!
Now that I am over the first shock of having the date changed, I find I feel pretty positive about the whole thing. Clearly my basic state of health is very good, and I didn't have a really bad reaction to the cytoxan. While the chemo is of longer duration, apparently the daily dosage isn't quite so high, which will, hopefully, mean I won't be quite so out of it. The sooner we get the transplant done, the sooner I can begin to recover and start thinking about spring and Copper Harbor. This part has gone so well, I have high hopes for the rest of it.
Now, if I can get packed...
This has ended up being a very wearying day. I got up early because I was instructed not to eat after 6am. We got to Ann Arbor before 10:30 for my blood draw then found our way (with three stops for directions) to the proper waiting room by 11, which is when they told me to appear. I took off my upper clothes and they started an IV. My appointment was supposed to be at 12. Finally at 4pm, they wheeled me into the operating room. That's why they call us patients, isn't it?
I now have a thing in my neck just below my biopsy scar, with three pigtails coming out of it. By the time we finally got to my room in the Med Inn, it was 5, and I was horribly thirsty, pretty hungry, and tired just from sitting around.
All the nurses - including the male operating room nurse - were apologizing profusely for the wait, but it turns out they have some strange way of allocating operating rooms to various procedures, and if your procedure is assigned to a room that has somebody who takes a longer time than allotted, you wait, even though there may be other operating rooms that are empty and other surgeons who are sitting around. Apparently the only people who think this is a good idea are the powers-that-be.
What interested me when I was in Bon Secours is that now that there are things to complain about, they never ask you how you liked your stay. I will be interested to see what the U of M Hospital does. I can guess.
This is not a bad room at all, and it has a handicap-accessible bathroom, which is nice. There is even a hand shower, so I can be clean.
The computer access isn't the greatest - I am sitting in the dark and there is only one phone line - and I can't get a high-speed connection. But I'm online, and that is all that counts!
While I was waiting, during a slow period in the recovery room, I got talking to a nurse, and we ended up sharing our websites. Hers is nice, with lots of pictures of her wedding and the house her husband is remodeling for them. She liked mine, too, but they use Netscape here, and some of my pictures would only load about 1/3 then stop, with the verbiage behind them. Arthur reported the same thing last night. I guess I am bound to get a copy of Netscape on one of the computers so I can check out how the site displays. Funny thing is, though, that Buster's picture loaded just fine, but the pictures of the house didn't. Weird. I think I created all the pages the same way.
Tomorrow will be an interesting day, and I am really tired tonight, so I will sign off and upload this.
I've taken the next step.
December 25 - Christmas Day
Christmas Eve has always felt like a High Holy Day to me - dark and blue, with candles and the choir. Christmas Day is warm and golden and red and full of carols and good food and good friends.
While this has been an atypical Christmas Day for me, it was full of good friends, as I had several telephone calls. I spent the day doing the things I listed yesterday, with frequent rests in between. The kitchen floor isn't clean, but the stove is, all the stuff that needs to go in the freezer or out is disposed of properly, Debbie's gift is wrapped, and I am almost packed. My radio station played Christmas music all day, which helped me along.
I really believe the cats understand more of what I say than most people think. At least, all the time I was working, I had one cat or another with me in shifts. DC stayed in the kitchen, meowing, until he got too tired, and the minute he went off to sleep, Buster showed up and sat on my lap, looking sad, every time I sat down. Right now DC is behind the door in the bathroom, his favorite winter place, where the hot air from the register blows on him. Buster is curled up on my fleece jacket on my bed. I truly believe they know I am going away tomorrow, but I'm not sure they believe me when I say I won't be gone long. Buster just gives me that "Oh, yeah" look he has when I say that.
Well, I will get this uploaded so I can pack up the computer. At least I won't be away from it all week.
December 24 - Christmas Eve
It's not that I mind being home alone on Christmas Eve. This isn't the first time in my life I've been too sick to go out. I listened to lots of good (and some not so good) Christmas music today, washed 7 pairs of jeans so I would have clothes, and cleaned up the mountain of pots & pans left over from yesterday. Also started the car (to go to the post office), and noticed that the battery is getting weaker. I may have to call Diane from Ann Arbor and try to get her working on a Lemon complaint.
I really overdid yesterday. One forgets, I find. The neupogen definitely makes my arthritis worse, as well as causing other joint and muscle pains, and I did a lot of standing yesterday, so much that I was so sore I couldn't go to sleep. And certain things have to get done!
Tomorrow, I have to carve up the turkey and get it frozen, clean out the fridge, and pack. The kitchen just isn't going to get done, although I will try to clean the stove a little - it is gross. That isn't a huge task list, but when I have to sit down every ten minutes or so to rest my back, it takes lots of time.
I have celebrated Christmas mainly as a religious holiday for quite some time now. I think it started as our little family began to dwindle more and more. When there were only 3 of us it just wasn't the same, and I enjoy the Christmas Eve midnight service so much. When one gets home from church at 1:30am, a quiet Christmas Day is nice. Before we moved to Christ the King, I used to go to church on Christmas Day, too, because the choir sang, I thought the people who couldn't come out late at night deserved a nice service, too, and there were always a lot of no-shows. Christ the King does it a little more wisely: the Christmas Day service is all congregational carol singing, and no choir. That is nice, too, but I get all weepy when I try to sing carols, so I can't sing them. Some are so close to my heart that I get weepy when I hear them. That's what happens when one gets old and sentimental. I've always said they'll have to sing my favorite hymns at my funeral, because I can't sing any of them myself without breaking down. Especially at Christmas, there are just too many memories attached to all those lovely old songs.
Anyway, I had my service of lessons and carols from King's College, Cambridge this morning, and while they do it a little differently than we do, it was very nice. I feel I have had church today.
So I will leave with one of the customs from Peace Church. The response to the Sermon on Christmas Eve was always the following, one of the verses of Vom himmel hoch:
Ah, dearest Jesus, Holy Child,
Make Thee a bed soft, undefiled
Within my heart that it may be
A quiet chamber kept for Thee.
While I am waiting for the turkey to finish cooking, I will update . It has been a slow day. I got up late, to make up for lack of sleep the previous night, and haven't done much except prepare the turkey and wash a mountain of pots and pans that somehow accumulated on the stove. I have to admit to feeling pretty blah. Nothing to write home about, but I am headachy and the neupogen has given me a monumental backache. I think it will be an early night again tonight. It's good to be hibernating.
It's been snowing very lightly all day long, but not much has accumulated.
I fried up the giblets after the turkey was safely in the oven, and DC must have been really asleep, because he never smelled them until thisafter I ate them all. Then he went downstairs and licked the dish. I should have saved him some liver, but it really tasted good.
My sense of taste is returning, which means I will really be able to enjoy the turkey and all. And yesterday, Marian from U of M called around noon to tell me that while my blood counts had dropped a little, they were still very good - and she could hardly believe it. That is good news altogether, and I'm hoping it bodes well for the stem cell harvest.
Late yesterday afternoon, a nurse from the unit which will install my catheter called with all the usual pre-op questions, and said no, it wasn't 11:30, it was 11:00 and the operation was scheduled for noon. The usual. I think the last five times I've been to a hospital the various units have gotten something screwed up amongst them. She also didn't know why they wanted blood work, although that has to be a continuation of the same stuff from last week. Unfortunately, it was far too late to call the BMT unit back and get it straightened out, so I'll just have to make do, hope we get there a little early, hope the blood draw area isn't backed up like it was on the 13th, and get up to the "angio" unit (wherever that is) as close to 11:00 as possible. And I think, yes I need to get there a while before the surgery, but I question a whole hour. I think it just gives them warm fuzzies to know the patient is there and waiting.
So it has been nothing to write much about today, and I'll wrap this up.
Over the past day I have been thinking of how blessed I really am, to have Rainbow's End, and to have such wonderful friends, and to be able to do the things I really want to do. Nobody ever said we would go through life with no problems at all, and certainly any I have are not overwhelming and are definitely transient. While I was working, I rather buried myself in my work and my small family, and it has been a real joy to truly have a life at last. I know so many wonderful, caring people. I wish there were a way I could really thank them all for all they've done for me.
As for the present problems, as of yesterday, my white cell count hadn't dropped at all. That was good, because I had a rather full day - the doctor's office, bible class, church, the pet food store, and the supermarket. Whew! My stamina ain't what it used to be, and I even had to sit down on the bumper of the car before I could unload my shopping cart. The cart had lots of goodies in it, including a nice little turkey, stuffing, and some Yukon Gold potatoes. I will feast! I may cook tomorrow, or possibly Saturday.
I may have to postpone my cooking because of the mess in the kitchen. I was going to clean that today, but when I booted up the laptop (the one with this thing on it !!), it reported hard disk errors, and it took me the rest of the afternoon to clear them up. Doing a thorough scan of a 10gig disk drive is a slow process, and I ended up restarting it about 4 times...the fast fingers thing again. It seems to be OK now, but I haven't shut down since I completed the scan. I may actually have to consider backing up my personal files!
Anyway, I have to get some of the trash out tonight, and do cat pans, although I may shirk the recyclables again and they may eventually even get thrown in the trash instead. Hauling that barrel around in the cold is getting to be more than I care to do.
I spent some time on the telephone and finished a pair of really bright socks (rainbow colors) while I was waiting for the disk. I've also started a chenille hat for my next waiting room project. I love the feel of that rayon chenille, but it is hard to work in.
The nice news was that we won't need to be at Ann Arbor until 10:30 on Tuesday, so we won't have to get up in the middle of the night. Because I have bad veins in my right arm (possibly from the mastectomy), they are going to install a special mediport, and that will take place at 11:30. Unfortunately, it isn't the same thing they will use for the transplant and they'll have to take it out when the harvest is done, but it's actually a good thing. They were looking at the veins in the bend of my elbows, which, if they had used them, would have meant I couldn't have done anything with my hands for four hours. Yikes! So that has turned out OK. I still feel we'll get enough cells in two days at most.
So I must get on with tonight's chores and try to get to bed early, because it's 8:30 at the doctor's office again tomorrow. Then I can hibernate till Tuesday!
I had occasion to refer back to my entries for the past week, and it is abundantly clear to me that when I wrote the one for December 17, the aftereffects of the cytoxan had not completely worn off. There certainly were a couple of interesting sentences there. I was going to correct them, but then I thought, why? Everybody, including me, will understand. So far, everything is going fine. I talked to Marian (U of M) today and she said my blood counts were fine on Monday. I spent all day yesterday trying to make some sense of the mess in my bedroom, but I didn't get it all together. However, the cleaning people say all I have to do is call them, and since they understand the circumstances, they will send people to clean. So I have a reprieve.
Last night I composed my Christmas Letter. I really wonder if I should continue to do that - just a card is enough to say I'm still here, and I'm getting tired of writing unpleasant things at Christmastime. This may be the last time I do that. I am including both the website address and my email address in the letter, so soon almost anybody who wants to will be able to get in touch with me. Now all I have to do is address the cards...ugh!
I think I am getting lazier than usual. This is something I've noticed, though. When I am involved in a project of any sort, particularly an unpleasant one, I don't want to have to deal with anything else. Right now I have my mind set (unfortunately) on my body, and everything else is a distraction. I particularly hate that - the body is just the house of the mind, and it should just be there and not call attention to itself. I think I got this attitude because I've known so many older people with health problems who have nothing else to talk about except their organ recital. At least this thing is under way, and I can look forward to getting on with the rest of my life!
I am hibernating for another reason, too: it's still cold and snowy. We haven't had a winter like this in Detroit in a very long time, and it's such a wonderful luxury not to have to go out in it that I am taking advantage when I can. I'm hibernating upstairs, because the further down I go, the colder it gets, and if I turn up the heat so the first floor is warm, my bedroom is sweltering.
I will have to go out tomorrow, however. I have to be at the doctor's office at 8:30 to have my blood drawn again, so unless I feel horrible, I will go to bible class and church in the morning, and turn in my offerings and my choir folder. If I still feel all right, I will get the cat food tomorrow, so that all I have to do on Thursday is shop for food. I have decided that I will cook a small turkey on Friday or Saturday, have several good meals, and freeze some care packages for after I get home from the hospital.
I'll also freeze the carcass, so that when I have time, I can make my turkey soup. I'm enjoying my new stock pot so much that soup-making is even more fun than usual. I especially love to make turkey soup, because it's really making something out of nothing, just the bones I would otherwise throw away. Besides, it's wonderful comfort food. Hmmm...isn't there a container in the freezer downstairs? Yum!!
Well, the cards are still waiting, so I'll wrap this up for the time being. It would be good to be able to mail them tomorrow when I'm out (a little late at that!)
Just a short entry to keep in practice. I have been very gratified by how well I have felt - none of the predicted aftereffects have bothered me at all. I was looking back through my notes of the chemo in 1998, and I noticed that when I was getting CEPP, which included much larger doses of cytoxan and also VP-16, which I will get before the transplant, my principal complaint was extreme tiredness, except for what taking large doses of prednisone for ten days did to me. It wasn't until I started the CHOP and the adriamycin that I had bad stomach problems or a very sore mouth. So maybe that's just the way I react to cytoxan. Everybody is different, after all. I have to believe that if the ativan had anything to do with how I felt, it just made things worse. At least, Friday and yesterday the oral ativan didn't make me unable to keep my eyes open. I sort of thought that was how I would react anyway.
So I didn't do anything again today, but I guess I can excuse myself. Tomorrow will have to be different. I have to be at the doctor's office at 8:30 to get my blood drawn, and I really have to do some food shopping, among other things. Before my immune system gets really shot, I need to stock up on cat food, because while I won't be home for a while after Christmas, I will. Tomorrow I start the neupogen injections, so I have to stop at the drug store to pick that up.
I spent the afternoon enjoying everybody's pictures of Keweenaw in the snow and talking to Shirley, which was fun. Now to eat and to bed. This 12 hours of sleep a day really cuts into production.
The computer bit me again, shutting down when I was just about through with this entry. So let's continue from yesterday. After 12 hours' sleep, I don't feel bad at all. No nausea, no seriously sore mouth, nothing else to report. That's a good omen to me. I expect that by Friday, when my blood counts bottom out, I won't feel very good, so I guess I will have to hibernate for Christmas.
The rest of the schedule is pretty much set.
Dec. 26 - insert catheter (the veins in my arms are too small)
Dec. 27 to ? Apheresis. It could take one day or five or more. Since they won't work over the New Year weekend, I'm hoping for a day or two.
Jan 2 - cat scan - why they want another one, I don't know. since the last one showed almost nothing left.
Jan 8 - final evaluation with doctor
Jan 10 - admit to hospital.
after that, there are 5 days of intensive chemo, two days of rest, and the transplant on Jan. 18. I will be there for at least 2 weeks afterward, if there are no complications. Not a pleasant way to spend a month, but then it will be over with and I can get on with the rest of my life.
I was very glad we weren't driving around the country today, since we had rain and freezing rain all day long and it was ugly in the extreme. It was even too icy to feed the birds - my deicer is in the garage, and the next time I can get out there, I must bring it in. I felt bad, because Mr. Cardinal, so bright and red, was trying to find something in the bottom of the feeder, and I don't think he got anything. He must be courting Mrs. Cardinal through the winter, because he is always much brighter at this time of year. Such a pretty bird!
Well, the Buster is telling me it's time to go downstairs and feed him, so I will sign this off for tonight.
Well, I didn't expect to be away so long, and then things started moving so fast I didn't get a chance to enter anything. Wednesday started out all right. The roads were clear from the snow we'd had Monday and Tuesday, and the drive wasn't at all bad, but with one thing and another we ended up at the U of M Cancer Center without lunch again. They were backed up like I've never seen them before: it took 45 minutes to get my blood drawn, so that put us behind then because they have to do the analysis before I see the doctor. Eventually we got to see Dr. Voravit, and they had tentatively scheduled my chemo for the 21st, but it was obvious that he is not a Christian and had no concept of this "choir practice" thing. So when we talked a little more, he said "I'd like to start it tomorrow" (meaning yesterday).
I agonized a bit, but frankly, as I've said, I'd just as soon get it over with, so we said OK. This was about 4:00 pm, and somebody said it was snowing again. While I worked with Jackie, the coordinator, Debbie got us some hotel reservations, and everybody scurried around to get me scheduled - for 7:30 am yesterday!
We decided, snow or no snow, we were not going home without dinner so we stopped at the Gandy Dancer and had a good dinner, and it was close to 6:30 by the time we left Ann Arbor. It had been snowing since about 3 and the roads were pretty bad, but we managed to miss the worst of the rush-hour traffic. People around here don't know how to drive in snow, though. It was after 9 by the time Debbie dropped me off at my house to pack and feed the cats.
She came back to my house and we took the truck, which, mercifully, started, and I was very glad we had when a guy did a 360 right in front of us on Moross and between the 4WD and the ABS brakes, I came to a safe, straight stop. We left my house at about 11:45, and we were finally in our hotel room at 1:45am. It snowed all time we were on the road, and there was an incredible amount of traffic in I94 at that time of night. Needless to say, neither of us slept very much or very well.
Yesterday was a blah. They had me so doped up on ativan that I could hardly keep my eyes open, and Debbie went shopping. We were both exhausted by the time I got out - almost 8 pm, I think. They sent me home with a continuous infusion pack of fluid which must have weighed 10 pounds, so I was up every hour or so all night long. That was what they wanted, since cytoxan can cause bladder problems. I have not had any nausea so far, and after the way the ativan made me groggy, I'm shading it, but I will be a good girl because I don't want any nausea. I will also try to drink
We got home around 2pm today - Debbie learned how to drive my truck real fast - and after we did musical cars and I fell down in a snow bank, I looked at my email until I couldn't read it any more - met a new friend in Copper Harbor - and took a nap. Right now, (8:30) I don't feel too bad. I have a backache, which is a known symptom, and a very slight twinge in my stomach which will go away when I take all my meds.
So, so far, so good. It was quite a shock and it screws up my holidays - such as they were. It's still, of all the things I've had to do in my life, the one I wanted to do least. Upward and onward.
Well, that has been a long time! My appointment with U of M is on December 13. I am in "restaging", as the coordinator said, so I have had four tests in four days, and so far they have scheduled another bone marrow biopsy for the middle of the afternoon on the thirteenth. I am questioning that, but probably I will have to have it. After that I am supposed to talk to the psychologist, and I really wonder how coherent I will be. That is also the day I will find out what the schedule is.
At this point, I find I am conflicted. I want to get the show on the road so I can get over it and get on with life as soon as possible, but I would also like very much to sing in church on Christmas Eve. I wish they wouldn't telescope things so much, and wait so long to decide on the schedule, but of course it depends a lot on what the tests say.
In the meantime, the weather has turned very cold and windy with a little snow. I'm finding it hard to keep my head warm out of doors. All of my hats seem to have one disadvantage or another. I noticed, though, that when it was especially cold, even the birds weren't coming to the feeder very much. The wind was too strong, and they were huddling on the ground with their feathers all fluffed out. I haven't seen the titmouse or the chickadee lately, but I've probably just missed them. I haven't seen the cardinal in the feeder yet, but the other morning Mr. Cardinal appeared in the pear tree, and he was so bright and red against the branches it was a pleasure to see him.
I guess Philippe is going to keep working on the house until the end of the year, and try to get all the major things done before he lets the road close. He thinks he can keep it plowed out at least till the first of January. It's probably a good idea - heaven knows where the floor guy will be next year, so better to get it taken care of now. They should have the cabinets installed before Christmas. How I wish I could see that, but he doesn't do pictures much and I doubt Shirley will be able to get out there. Oh, well. Eventually I will get to see it all.
It doesn't seem possible that this is December already! I've often wondered if the time passes so fast now, what will it be like in 10 years? My mother used to say time passed faster and faster as you get older, but I hardly see how it can.
I began my staging today, with a lung function test. This involved breathing into a machine at intervals for almost an hour. One of the tests didn't work right, but since I had to hold my nose myself instead of using a nose clip, I wasn't surprised that something didn't work right. I think the results will be all right, though.
I think one of the reasons I haven't felt so good for the past couple of days is because I have not gotten enough sleep. I do seem to need over eleven hours worth, and I also seem to sleep my best after 7 am. This makes it hard to keep normal-human hours. I did feel better today, until I got tired and hungry.
Shirley sent another batch of pictures, and I am adding a couple of them to the gallery. I have a very beautiful chimney.