Started with a check-up by Dr. Sunkin, with everything looking good. Had a new CEA (the tumor marker test) that had dropped even further in a week, down to 7.4, so all the news was good.
Started the chemo process with the usual 20 minutes of an anti-nausea drug & a steroid. Then, began the Taxotere infusion, at half the normal, which was the pace that worked after my reaction to it during Chemo #2. But even half-rate wasn't sufficient yesterday. After 5 minutes or so I got a reaction again. This time, it was just the really severe lower back pain. We stopped it before the other symptoms appeared. So they gave me another steroid injection, waited 30 minutes, and started it up at 1/6 the normal infusion rate for 15 minutes. When that went well they went to 1/3 the normal rate for another 15 minutes and then to 1/2 the rate for the rest of the time. It went fine, but what with the 30-minute wait time, it all took forever. We left the house at 8:30 and didn't get home till 4:00. A good day's work. Hamilton came this time, to check it all out, along with Tony. Luckily, they both had their laptops as well as cell phones to work for some of the time. I had my Berry to monitor e-mail, and I still had Sunday's NY Times as well as Tuesday's, so I was busy too.
Tony & Ham ran into Dr. Sunkin downstairs at the coffee/lunch place and he told them how brave & dignified he thought I was. Nice to hear.
I go back up today for just the two-hours of IV fluids & the Neulasta injection to boost the immune system, then I go down my chemo hole for a few days. I've got a big pile of books at the ready.
Speaking of books, if you haven't read "Three Cups of Tea," do so. It is absolutely awe-inspiring, a true story about building schools in the wilds of Pakistan & Afghanistan. It starts slowly, but is worth hanging in there. This is the guy who should have won the Nobel Peace Prize. Check it out.
Wednesday, November 25, 2009
Early Thanksgiving
Our family Thanksgiving celebration this past weekend was simply wonderful. Rob & Ellie came up from Brooklyn with the huggables (Arabelle, 4, & Charlotte, 6). Newlyweds Hamilton & Annette flew up from New Orleans (here for the week), Chris & Gwen came Saturday and then brought Casey, 13, and CJ, 12, on Sunday. Mara & Tony were here, of course. Sitting around the dinner table Saturday night, I can't remember the last time I laughed so much. It was just a delight. And Sunday, turkey day, was a repeat. Mara did the lion's share of the cooking, including two different stuffings, one for each bird, with the able help of Ellie and assistance from Hamilton, Annette, & Tony. Chris contributed a delicious side dish. All I did was occasionally advise. Sunday, Jayson called from Colorado and we passed around the phone, so truly everyone was here.
The one poignancy was that I couldn't help wondering if this would be my last Thanksgiving. I saw a headline in the NY Times Dining section about tensions around the family Thanksgiving table. I didn't even bother reading it, it was so far from our experience, as I looked around and saw all these smiling, caring faces. If it is my last, it really was just about perfect.
The one poignancy was that I couldn't help wondering if this would be my last Thanksgiving. I saw a headline in the NY Times Dining section about tensions around the family Thanksgiving table. I didn't even bother reading it, it was so far from our experience, as I looked around and saw all these smiling, caring faces. If it is my last, it really was just about perfect.
Wednesday, November 18, 2009
Simple Pleasures
The old cliche that having a life-threatening illness makes one put things in perspective is actually true. Sunday, for instance, was just a very special day. We had a delicious dinner the night before with close friends, then was treated to another warm, sunny day. I went for a long walk with Mara & the dog that just felt great, something I would not have thought twice about last summer, when I was routinely walking the golf course for 4 or 5 miles several times a week.
Then, Chris came over with his new 12-string guitar and treated us to an hour of playing & singing. I realized it had been months since I'd heard him. He has a wonderful voice, an amazingly huge repertoire and the new guitar sounds great. Among the many songs he did was Jackson Browne's "Something Fine" with the line "Now you say 'Morocco' and that makes me smile; I haven't seen Morocco in a long, long while," and several other references to the place where Tony & I met. Made me think I'd really like to get back there for a visit with Tony, all these years later.
As Chris was singing, we were treated to another spectacular sunset, which made me think of Jayson, who has some great sunset photos he took when he was home. It was very moving.
One of the several pluses of the diagnosis is that the news is still spreading among long-ago colleagues, old friends I'd lost track of, even a favorite-of-mine one-time girlfriend of Jayson's from when they were teens. Every day brings new e-mails and cards from these 'lost' people, so the circle is growing exponentially and it's just great to make contact again. I was never very good about keeping up old networks. I was always too busy with the current to spend time on the past. Now, I have the time and am relishing the reconnections.
So I am just enjoying working on Bounty, feeling good, getting ready for a big Thanksgiving with family -- all simple pleasures.
Then, Chris came over with his new 12-string guitar and treated us to an hour of playing & singing. I realized it had been months since I'd heard him. He has a wonderful voice, an amazingly huge repertoire and the new guitar sounds great. Among the many songs he did was Jackson Browne's "Something Fine" with the line "Now you say 'Morocco' and that makes me smile; I haven't seen Morocco in a long, long while," and several other references to the place where Tony & I met. Made me think I'd really like to get back there for a visit with Tony, all these years later.
As Chris was singing, we were treated to another spectacular sunset, which made me think of Jayson, who has some great sunset photos he took when he was home. It was very moving.
One of the several pluses of the diagnosis is that the news is still spreading among long-ago colleagues, old friends I'd lost track of, even a favorite-of-mine one-time girlfriend of Jayson's from when they were teens. Every day brings new e-mails and cards from these 'lost' people, so the circle is growing exponentially and it's just great to make contact again. I was never very good about keeping up old networks. I was always too busy with the current to spend time on the past. Now, I have the time and am relishing the reconnections.
So I am just enjoying working on Bounty, feeling good, getting ready for a big Thanksgiving with family -- all simple pleasures.
Friday, November 13, 2009
Good News
I got blood test results today for the CEA test, which is a tumor marker test. Serum from people with lung cancer, as well as a few other cancers, have higher levels of CEA than healthy individuals. What is important for me is that my CEA stays the same or, even better, drops, indicating the chemo is working.
I started with a 12.5 CEA, which is elevated, consistent with the lung cancer diagnosis. My CEA has now, after only two rounds of chemo, dropped to 7.7. As the oncologist nurse who called with the results said, "it is good news" and she congratulated me.
So the first objective test we have shows things are definitely moving in the right direction.
I started with a 12.5 CEA, which is elevated, consistent with the lung cancer diagnosis. My CEA has now, after only two rounds of chemo, dropped to 7.7. As the oncologist nurse who called with the results said, "it is good news" and she congratulated me.
So the first objective test we have shows things are definitely moving in the right direction.
Thursday, November 12, 2009
Easier the Second Time Around
Well, it turns out that the second round of chemo was easier than the first. I had none of the most unpleasant side effects affecting digestion, etc. And I was not knocked out quite so much, although I did spend most of four or five days in/on the bed. My appetite was a little better, too. I can only hope the rest of the treatments are like the second round, not the first.
With Jayson here through the 2nd chemo round, he kept urging me to get up & out, to take advantage of the unusually warm weather. I did manage to hobble outside & read the Sunday papers in the sun on the deck. It felt delicious, but then some back discomfort drove me back to bed and the heating pad. I realized I hadn't needed the heating pad for over a week, but for some reason, the discomfort at the adrenal tumor site came back. It was nothing severe. I didn't need to take any pain med. The heating pad took care of it. When I asked the doctor about the recurrence, he really had no idea. The whole pain thing is a mystery. I've never had anything like the pain that drove me to the ER in the first place, or back to the hospital after Mississippi -- thank goodness.
On Day 3, feeling somewhat energetic still, I had Tony give me a buzz cut. I was tired of shedding more hair than our Golden Retriever. A week later, I continue to lose this last little bit of hair.
I am a little surprised at how much I hate how I look almost bald. I didn't think it would bother me, but it really does. I probably should have seen that coming. After all, I've been bleaching my hair since I was about 18, which is a pretty long time to be focused on hair. One problem is that I never wear hats. I hate the way they feel, so having to wear something on my head all the time -- either a wig or turban wrap -- is uncomfortable. As much as I hate how I look, I can see I will probably go around the house bald and just put a cover on when I go out. After all, I don't see myself. I pretty much avoid mirrors.
Returning for the Day 8 follow-up to the oncologist yesterday, all the blood work looked okay to him, although most of the numbers continue to fall. He said there are no red flags, that it all just shows I am getting chemo. There is one set of results, though, kind of lurking in the background, that show a slightly impaired liver function. The physician's assistant that we had seen after the first chemo also mentioned it. Dr. Sunkin reiterated that the liver had been clean on the scans, but it is a little troubling.
I am on schedule for the next chemo two days before Thanksgiving. So we are planning to have Thanksgiving dinner the Sunday before. Hamilton & Annette are coming in for a week. Rob, Ellie & the girls will come up for the weekend, and Chris & family will come over. Since we don't usually all get together for Thanksgiving, this will make it extra special. We will only be missing Jayson. Mara, Tony & I are trying to decide on size(s) of turkey(s) and where to order a fresh, local bird from. Fun!
With Jayson here through the 2nd chemo round, he kept urging me to get up & out, to take advantage of the unusually warm weather. I did manage to hobble outside & read the Sunday papers in the sun on the deck. It felt delicious, but then some back discomfort drove me back to bed and the heating pad. I realized I hadn't needed the heating pad for over a week, but for some reason, the discomfort at the adrenal tumor site came back. It was nothing severe. I didn't need to take any pain med. The heating pad took care of it. When I asked the doctor about the recurrence, he really had no idea. The whole pain thing is a mystery. I've never had anything like the pain that drove me to the ER in the first place, or back to the hospital after Mississippi -- thank goodness.
On Day 3, feeling somewhat energetic still, I had Tony give me a buzz cut. I was tired of shedding more hair than our Golden Retriever. A week later, I continue to lose this last little bit of hair.
I am a little surprised at how much I hate how I look almost bald. I didn't think it would bother me, but it really does. I probably should have seen that coming. After all, I've been bleaching my hair since I was about 18, which is a pretty long time to be focused on hair. One problem is that I never wear hats. I hate the way they feel, so having to wear something on my head all the time -- either a wig or turban wrap -- is uncomfortable. As much as I hate how I look, I can see I will probably go around the house bald and just put a cover on when I go out. After all, I don't see myself. I pretty much avoid mirrors.
Returning for the Day 8 follow-up to the oncologist yesterday, all the blood work looked okay to him, although most of the numbers continue to fall. He said there are no red flags, that it all just shows I am getting chemo. There is one set of results, though, kind of lurking in the background, that show a slightly impaired liver function. The physician's assistant that we had seen after the first chemo also mentioned it. Dr. Sunkin reiterated that the liver had been clean on the scans, but it is a little troubling.
I am on schedule for the next chemo two days before Thanksgiving. So we are planning to have Thanksgiving dinner the Sunday before. Hamilton & Annette are coming in for a week. Rob, Ellie & the girls will come up for the weekend, and Chris & family will come over. Since we don't usually all get together for Thanksgiving, this will make it extra special. We will only be missing Jayson. Mara, Tony & I are trying to decide on size(s) of turkey(s) and where to order a fresh, local bird from. Fun!
Tuesday, November 3, 2009
Chemo #2
Day 1 of the second round of chemo started off fine today. Felt great this morning and yesterday, better than I have since Sept. 21st, the day before the diagnosis. It was great to know I could recover so completely, if only briefly.
Since Jayson had come home Sunday night, he and Mara came with me. Tony got the day off (to rake leaves and do other fun stuff like that.)
The first glitch was the pre-chemo nausea drug they give. My wonderful insurance company won't pay for the $1,000 Aloxi that I had the first time. I don't know whether we'll have to fight with them over it. I just know we got a notice saying it is not in their formulary. So the Infusion Center went to a back-up drug, Zofran, instead. They give it for 20 minutes, just ahead of the first of two chemo drugs: Taxotere.
Five minutes into the Taxotere, though, I got a reaction, even though I'd had the same thing at the same infusion rate three weeks ago with no problem. But today, I felt very peculiar, got sweaty and clammy, blood pressure dropped, felt nauseous, had fairly severe lower back pain (not where the adrenal tumor is but classic lower back -- the muscles had seized in response. On a scale of 0-10, it was about a 7. Nurses & doctors are always asking patients to rate their pain level.)
As soon as it started, I asked Mara to get the nurse, who came running. She immediately stopped the Taxotere, called the doctor, and gave me a shot (maybe of a steroid, I'm not quite sure) to stop the allergic reaction. It took about five minutes to work.
Luckily, also, the doctor happened to be just down the hall in his office, rather than over in the hospital, so he too came quickly. He sat with me for about 10 minutes, listened to my lungs, and discussed the options. He could switch to another drug, Olympta?, if needed. But I hated the idea of having to leave the first-choice drug for a back-up. So we decided to give me 30 minutes to fully recover, and then try the Taxotere again at half the infusion speed. I didn't care that it would take twice as long. I wanted to be able to tolerate the first-choice drug.
So the nurse started it back up. Five minutes into this second try, I thought I started feeling weird again and asked Mara to get the nurse again. She came right away and stopped it again, but even in the minute or so it took to do that, I didn't continue to feel bad. I think I was just nervous, being overly vigilant, so I had her turn the Taxotere back on. She sat with me for about 10 minutes, just to be sure all was well. It was. We finished the Taxotere and then went on to the Carboplatinum, which does not cause the reactions that the Tax drugs do. Whew!
While Sunkin was sitting with me, he told me about a patient with a very similar cancer whose tumor(s) had shrunk dramatically on these drugs. Very, very nice to hear. He also ordered an additional blood test as part of the regular work-up that will give him some info on how the tumors are doing.
In the meantime, I still have a little bit of hair, but not enough to go anywhere. So I am learning how to wrap a smallish Pashmina shawl into a kind of turban. My mother bought half a dozen colors from a street vendor. I guess I'll alternate with the wig, once I really have no hair -- in the next day or two.
My hope with this second round of chemo is that because I am going into it in much better shape than I was for the first round, that it won't knock me out quite so much, and because I know what to expect.
Although with today's experience, I guess I need expect the unexpected.
Since Jayson had come home Sunday night, he and Mara came with me. Tony got the day off (to rake leaves and do other fun stuff like that.)
The first glitch was the pre-chemo nausea drug they give. My wonderful insurance company won't pay for the $1,000 Aloxi that I had the first time. I don't know whether we'll have to fight with them over it. I just know we got a notice saying it is not in their formulary. So the Infusion Center went to a back-up drug, Zofran, instead. They give it for 20 minutes, just ahead of the first of two chemo drugs: Taxotere.
Five minutes into the Taxotere, though, I got a reaction, even though I'd had the same thing at the same infusion rate three weeks ago with no problem. But today, I felt very peculiar, got sweaty and clammy, blood pressure dropped, felt nauseous, had fairly severe lower back pain (not where the adrenal tumor is but classic lower back -- the muscles had seized in response. On a scale of 0-10, it was about a 7. Nurses & doctors are always asking patients to rate their pain level.)
As soon as it started, I asked Mara to get the nurse, who came running. She immediately stopped the Taxotere, called the doctor, and gave me a shot (maybe of a steroid, I'm not quite sure) to stop the allergic reaction. It took about five minutes to work.
Luckily, also, the doctor happened to be just down the hall in his office, rather than over in the hospital, so he too came quickly. He sat with me for about 10 minutes, listened to my lungs, and discussed the options. He could switch to another drug, Olympta?, if needed. But I hated the idea of having to leave the first-choice drug for a back-up. So we decided to give me 30 minutes to fully recover, and then try the Taxotere again at half the infusion speed. I didn't care that it would take twice as long. I wanted to be able to tolerate the first-choice drug.
So the nurse started it back up. Five minutes into this second try, I thought I started feeling weird again and asked Mara to get the nurse again. She came right away and stopped it again, but even in the minute or so it took to do that, I didn't continue to feel bad. I think I was just nervous, being overly vigilant, so I had her turn the Taxotere back on. She sat with me for about 10 minutes, just to be sure all was well. It was. We finished the Taxotere and then went on to the Carboplatinum, which does not cause the reactions that the Tax drugs do. Whew!
While Sunkin was sitting with me, he told me about a patient with a very similar cancer whose tumor(s) had shrunk dramatically on these drugs. Very, very nice to hear. He also ordered an additional blood test as part of the regular work-up that will give him some info on how the tumors are doing.
In the meantime, I still have a little bit of hair, but not enough to go anywhere. So I am learning how to wrap a smallish Pashmina shawl into a kind of turban. My mother bought half a dozen colors from a street vendor. I guess I'll alternate with the wig, once I really have no hair -- in the next day or two.
My hope with this second round of chemo is that because I am going into it in much better shape than I was for the first round, that it won't knock me out quite so much, and because I know what to expect.
Although with today's experience, I guess I need expect the unexpected.
Sunday, November 1, 2009
Going Bald
The hair loss is a funny thing. On the one hand, I was totally ready for it. I stopped on the way to the first chemo session and bought a wig. I went on-line and ordered two turbans (disappointing when they arrived) and several scarves. My mother sent enough scarves for two lifetimes of baldness. So I was ready.
But now that it is coming out, I am dreading it. It started coming out around the two-week point after the first chemo session. They said it would come out between week two and three, and they seem to be right on the money. By the Friday between week two and three, I was shedding worse than our golden retriever. I tried to forestall it by not washing my hair, which sort of worked for a while, but I had to wash it eventually. So Sunday I washed it and I think more fell out than I have left on my head. I’m within a day, at most two, of taking the rest off with a buzz cut. I pulled out one the scarves and did a wrap, that was better than I’d expected.
I realize what I dread about it is not the aesthetics but that being bald says more than anything, more than the port or the feeling crummy, “Cancer Patient.” And that is just not how I want to define myself. So I need to work on that one.
Meanwhile, Tony has started working with me doing healing sessions. Years and years ago, when we lived in the city, he took a number of seminars and workshops on meditation and healing. Over the years, he has occasionally used some of the techniques with his hospice patients (he’s a volunteer with the local hospice organization). Now, he is working with me. The sessions run about 20 minutes or so (actually, that’s just my guess, since I lose track of time), and he has me doing relaxation breathing and then some wonderful visualization – of blue skies, warm, nurturing sunlight (Leo that I am, I love the sun imagery) and then a healing white light. I am sure it will help.
What also helps is all the wonderful e-mails and cards I am getting. I have a stack of unopened cards that came after the worst of the chemo side effects had worn off, so I thought I’d save them and open them when I am feeling crummy again. It’s funny that something so simple as a card or a note or flowers can be so helpful. From the other side, I never realized that.
The First Chemo
Three weeks after that first diagnosis in the ER, chemo was slated to start: Monday, Oct. 12th, Columbus Day. Tony took me up to the Infusion Center at Sunkin's office, right next to St. Peter's Hospital, for my 11 a.m. appointment. We had just settled in -- me in an oversized recliner, Tony in a visitor's chair -- when the power went out. We waited and waited. To my surprise, they didn't have a generator for this doctor's building, which also houses a radiation treatment center. After about half an hour, a manager came through to tell the staff that the big construction project right next door was evidently the culprit and it would take the power company hours to restore service. So they drew my blood for the needed tests and then sent me home, to return the next day. Pretty anticlimactic.
Mara arrived that evening, having bought a one-way ticket from Austin, TX. She shut off the power at her apartment, left her car in a friend's garage, and came home open-ended -- with her cookbooks, favorite knife and a few other kitchen implements -- ready to cook up a storm.
So when we returned for the chemo the next day, Mara joined us. There I was in the recliner surrounded by family. The chemo itself was quite uneventful, through the port. We read and chatted. I ate a sandwich from a tray they brought around.
We brought fruit-flavored ice pops with us for me to suck on. An oncologist friend whose wife had had chemo for breast cancer suggested keeping one in my mouth the whole time I was getting the chemo as a way of preventing mouth sores -- to keep the mouth so cold it was not hospitable to the chemo. But after the second pop had melted in my mouth in about 30 seconds, we realized this wasn't going to work. The nurse was able to supply a cup of ice chips instead, and showed Mara where to refill it as needed.
The first night, I woke up every hour with my mouth so dry that it was stuck together. It wasn't like any dry mouth from sleeping with it open that I had ever had. It felt like the chemo must just suck up all the body's hydration.
Which no doubt explains why I go back the next day for a couple of hours of IV fluids, as well as the immune-boosting shot.
By Day 3 I felt pretty punk. I have never felt such exhaustion in my life. I wasn't sleepy during the day, just too exhausted to get out of bed, or talk on the phone, or do much of anything but lie in bed.
I wasn't nauseous, thanks to all the anti-nausea drugs they had pumped into me before, during & immediately after the chemo. But everything tasted metallic (my tongue was heavily coated) and all my normally favorite foods were not at all appealing. In order to be able to sip water, we put a drop of lemon juice into it. Otherwise, it tasted too metallic to drink.
I have never been so un-hungry in my life. I'd take two bites of something and feel totally full. I learned to eat -- a little -- even though I was not at all hungry. Same with drinking, and yet theoretically, I was supposed to drink 64 oz. a day of fluids. No way!
Day 3 & 4 were the worst, and then very, very slowly, the side effects started recede. Tony got a lobster dinner for us on Day 5. I was worried I wouldn't be able to eat it, but I was able to enjoy a small serving (and to finish the leftovers over the next several days). In about a week, my appetite and sense of taste returned, but I still felt really tired.
The visit with the P.A. at Sunkin's office on Day 8 to go over the blood test I had the day before and to discuss how it was going went fine. The blood work was good, and the P.A. just urged me to push myself as much as possible. Easy for her to say, but of course, she is right. The scale showed only a loss of two pounds.
After about two weeks, I was able to go for short walks, and I've extended the distance over the next week.
Now, as I am two days away from the second chemo, I have a full appetite, which I have been trying to take advantage of, to try to put a little weight on, knowing what is coming. But even now, I don't have my normal energy level. I still need to rest some, and I still go to bed early.
I guess we'll all get used to the rhythm of the chemo. Mara & Tony were amazing when I was so totally laid up. They waited on me hand and foot, being sure I always had something to drink and offering a wide variety of foods every couple of hours. I cannot imagine how someone who lives alone could cope. I couldn't get my sorry ass out of bed.
Then, once I had recovered sufficiently to make it into the kitchen, what was once my kitchen, I found a very different kitchen. Plastic containers were not put away. Foods were in different places in the pantry. Some of my spices were moved from one location to another. Any person who rules their own kitchen will appreciate how disconcerting this all was. Mara and Tony both run the kitchen very differently than I do. So we laughed some about it. They knew I was better when I got down on the floor and worked in the cabinet putting away all the containers, matching tops, etc. But mostly, I continued to leave kitchen duty to them. After all, Mara in particular was doing such a fabulous job, there was no reason to return and take over. She is in her glory in the kitchen. The more complicated the dish, the more she enjoys making it.
As for the dramatically reduced energy level, one day on the phone Ellie said how frustrated I must be, knowing normally what a busy life I lead, one that requires lots of energy. But I realized that my world has already shrunk dramatically, that one is only frustrated by a lack of energy if you have a lot to do. And I had already taken a lot off the table. I resigned from the Fair board, a move I was already planning in August, having nothing to do with cancer, but I pushed up the resignation. I advised the Bounty board that I would be stepping back. So my days were now free to lie on my bed, answer e-mails from friends, talk with family when I felt up to it, and read. Visitors seemed way too much. I have a great pile of books for the first time in several years, for now I really have reading time.
Hamilton came home for the weekend. I was glad he came when I was feeling my best, so I could enjoy his visit. He is planning to return around Thanksgiving with his bride. The problem is, I have another chemo two days before Thanksgiving, so I'm not likely to enjoy much turkey. Rob & Ellie and their girls will come up the weekend before for a Thanksgiving dinner, and Chris, Gwen & their boys will all come too.
It's been great to see Casey & CJ, my grandsons who live a mile away. They can't come the week after chemo, because of the surpressed immune system, but once we are past that point and the blood work shows a normal white count, they can come. They came over last night to show me their fabulous Halloween costumes before they went out trick or treating. It's a joy.
Jayson flies in tonight from the mountains of Colorado -- for a two-week stay. He hasn't been home that long in over a dozen years, since his college days. He tried to fly home two weekends ago, but got stuck at the Denver airport when not one but two planes he was scheduled to fly out on were grounded with mechanical trouble. Sixteen hours after he'd left home, he finally rented a car and drove the four-plus hours home to Crested Butte, having missed the last flight home by hours and hours. It was the day from hell. So I have my fingers crossed. At the moment, he is in the Denver airport with a several-hours layover. He called to say three other United flights are delayed due to mechanical problems. I'm burning candes.
Mara arrived that evening, having bought a one-way ticket from Austin, TX. She shut off the power at her apartment, left her car in a friend's garage, and came home open-ended -- with her cookbooks, favorite knife and a few other kitchen implements -- ready to cook up a storm.
So when we returned for the chemo the next day, Mara joined us. There I was in the recliner surrounded by family. The chemo itself was quite uneventful, through the port. We read and chatted. I ate a sandwich from a tray they brought around.
We brought fruit-flavored ice pops with us for me to suck on. An oncologist friend whose wife had had chemo for breast cancer suggested keeping one in my mouth the whole time I was getting the chemo as a way of preventing mouth sores -- to keep the mouth so cold it was not hospitable to the chemo. But after the second pop had melted in my mouth in about 30 seconds, we realized this wasn't going to work. The nurse was able to supply a cup of ice chips instead, and showed Mara where to refill it as needed.
The first night, I woke up every hour with my mouth so dry that it was stuck together. It wasn't like any dry mouth from sleeping with it open that I had ever had. It felt like the chemo must just suck up all the body's hydration.
Which no doubt explains why I go back the next day for a couple of hours of IV fluids, as well as the immune-boosting shot.
By Day 3 I felt pretty punk. I have never felt such exhaustion in my life. I wasn't sleepy during the day, just too exhausted to get out of bed, or talk on the phone, or do much of anything but lie in bed.
I wasn't nauseous, thanks to all the anti-nausea drugs they had pumped into me before, during & immediately after the chemo. But everything tasted metallic (my tongue was heavily coated) and all my normally favorite foods were not at all appealing. In order to be able to sip water, we put a drop of lemon juice into it. Otherwise, it tasted too metallic to drink.
I have never been so un-hungry in my life. I'd take two bites of something and feel totally full. I learned to eat -- a little -- even though I was not at all hungry. Same with drinking, and yet theoretically, I was supposed to drink 64 oz. a day of fluids. No way!
Day 3 & 4 were the worst, and then very, very slowly, the side effects started recede. Tony got a lobster dinner for us on Day 5. I was worried I wouldn't be able to eat it, but I was able to enjoy a small serving (and to finish the leftovers over the next several days). In about a week, my appetite and sense of taste returned, but I still felt really tired.
The visit with the P.A. at Sunkin's office on Day 8 to go over the blood test I had the day before and to discuss how it was going went fine. The blood work was good, and the P.A. just urged me to push myself as much as possible. Easy for her to say, but of course, she is right. The scale showed only a loss of two pounds.
After about two weeks, I was able to go for short walks, and I've extended the distance over the next week.
Now, as I am two days away from the second chemo, I have a full appetite, which I have been trying to take advantage of, to try to put a little weight on, knowing what is coming. But even now, I don't have my normal energy level. I still need to rest some, and I still go to bed early.
I guess we'll all get used to the rhythm of the chemo. Mara & Tony were amazing when I was so totally laid up. They waited on me hand and foot, being sure I always had something to drink and offering a wide variety of foods every couple of hours. I cannot imagine how someone who lives alone could cope. I couldn't get my sorry ass out of bed.
Then, once I had recovered sufficiently to make it into the kitchen, what was once my kitchen, I found a very different kitchen. Plastic containers were not put away. Foods were in different places in the pantry. Some of my spices were moved from one location to another. Any person who rules their own kitchen will appreciate how disconcerting this all was. Mara and Tony both run the kitchen very differently than I do. So we laughed some about it. They knew I was better when I got down on the floor and worked in the cabinet putting away all the containers, matching tops, etc. But mostly, I continued to leave kitchen duty to them. After all, Mara in particular was doing such a fabulous job, there was no reason to return and take over. She is in her glory in the kitchen. The more complicated the dish, the more she enjoys making it.
As for the dramatically reduced energy level, one day on the phone Ellie said how frustrated I must be, knowing normally what a busy life I lead, one that requires lots of energy. But I realized that my world has already shrunk dramatically, that one is only frustrated by a lack of energy if you have a lot to do. And I had already taken a lot off the table. I resigned from the Fair board, a move I was already planning in August, having nothing to do with cancer, but I pushed up the resignation. I advised the Bounty board that I would be stepping back. So my days were now free to lie on my bed, answer e-mails from friends, talk with family when I felt up to it, and read. Visitors seemed way too much. I have a great pile of books for the first time in several years, for now I really have reading time.
Hamilton came home for the weekend. I was glad he came when I was feeling my best, so I could enjoy his visit. He is planning to return around Thanksgiving with his bride. The problem is, I have another chemo two days before Thanksgiving, so I'm not likely to enjoy much turkey. Rob & Ellie and their girls will come up the weekend before for a Thanksgiving dinner, and Chris, Gwen & their boys will all come too.
It's been great to see Casey & CJ, my grandsons who live a mile away. They can't come the week after chemo, because of the surpressed immune system, but once we are past that point and the blood work shows a normal white count, they can come. They came over last night to show me their fabulous Halloween costumes before they went out trick or treating. It's a joy.
Jayson flies in tonight from the mountains of Colorado -- for a two-week stay. He hasn't been home that long in over a dozen years, since his college days. He tried to fly home two weekends ago, but got stuck at the Denver airport when not one but two planes he was scheduled to fly out on were grounded with mechanical trouble. Sixteen hours after he'd left home, he finally rented a car and drove the four-plus hours home to Crested Butte, having missed the last flight home by hours and hours. It was the day from hell. So I have my fingers crossed. At the moment, he is in the Denver airport with a several-hours layover. He called to say three other United flights are delayed due to mechanical problems. I'm burning candes.
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