Today is exactly five months since my diagnosis of Stage IV lung cancer. It really seems like a lifetime ago, and it sort of is -- spending this time reminiscing about a chockful, wonderful life.
But for those of you that I don't get to see, time for a brief medical update. As expected, my physical world has shrunk pretty dramatically, although not my mental. The good news is I am not in any pain, sleep well at night and still enjoy a good meal.
The not-so-good-news is I am already weak, spending most of my time in bed. Perhaps the wheelchair delivered today will help get me back out to the dining room. I can't imagine leaving the house anymore, though. Somehow the pill bottle count on my nightstand has grown to eight, but luckily,I can still manage them so I am alert, not drugged or drowsy. The coughing, which can badly interfere with communicating (very frustrating) is nicely under control for the moment. Fingers crossed it stays that way.
A liter of saline 3 times a week keeps me hydrated. So luxurious to get it in my own bed, thanks to Chris. I doubled the steroid dose to see if it helps my right-side weakness. All my typing is now just left-handed, pretty slow-going! It just adds to how difficult it is to keep the blog going, but I am committed, eventually turning to dictation at some point, assuming I can keep the cough under control.
Monday, February 22, 2010
Conversations
An unexpected and welcome gift out of all this is "conversations" with friends, mostly via e-mail. By telling my story, it has elicited stories from others. Some, of course, about their long-ago successful battle with cancer that I never knew about.
Other conversations have been wonderful reminiscences about early married life, that first apartment together in Manhattan and working out a life together.
I have also enjoyed discussing the many different was some of us have parented in an effort to raise healthy, productive children. We, for example, were a team sports family. One of my favorite things was to cheer from the sidelines, starting with Little League and moving onto softball, football, lacrosse, field hockey and basketball. A friend, on the other hand, did individual sports, cycling, etc. And while we went off to the Cape for a couple of weeks in summer, her family went to Latin America!
And then there was the story from a friend who was a health care professional whose adoption came through at the same time she learned her mother was dying. With the support of her husband she took the baby to her mother's. She tells of her big family all pitching in with night baby feedings as well as late night care of her mother and "discovering that the 'work' of family was so much more important than the professional career [she] had always put first."
Others have shared their own grief process. It is amazing how individualized it is. One friend said when she got the news her mother was dying, she just cried for a whole day. Then, she never shed another tear, even at the funeral.
When an old friend drove down from Maine, via Boston, in last week's snowstorm, we of course shared family photos, that now include grandchildren. And what struck her is that with this process, it allows me to continue to live in not only the past, but also the present as well as the future.
Other conversations have been wonderful reminiscences about early married life, that first apartment together in Manhattan and working out a life together.
I have also enjoyed discussing the many different was some of us have parented in an effort to raise healthy, productive children. We, for example, were a team sports family. One of my favorite things was to cheer from the sidelines, starting with Little League and moving onto softball, football, lacrosse, field hockey and basketball. A friend, on the other hand, did individual sports, cycling, etc. And while we went off to the Cape for a couple of weeks in summer, her family went to Latin America!
And then there was the story from a friend who was a health care professional whose adoption came through at the same time she learned her mother was dying. With the support of her husband she took the baby to her mother's. She tells of her big family all pitching in with night baby feedings as well as late night care of her mother and "discovering that the 'work' of family was so much more important than the professional career [she] had always put first."
Others have shared their own grief process. It is amazing how individualized it is. One friend said when she got the news her mother was dying, she just cried for a whole day. Then, she never shed another tear, even at the funeral.
When an old friend drove down from Maine, via Boston, in last week's snowstorm, we of course shared family photos, that now include grandchildren. And what struck her is that with this process, it allows me to continue to live in not only the past, but also the present as well as the future.
Wednesday, February 10, 2010
An Upturn
As anyone who has skimmed this blog knows, the whole experience has been incredibly up and down -- emotionally and physically. Jayson came home Monday night for a quick three-day visit from the mountains of Colorado and what a boost for me! I was showered and dressed Tuesday morning before he was even up.
We just had a very special morning, talking about what was important in our relationship and some about his future, about what I am sad to miss getting to see.
Since I taught him to ski at age 3 by skiing with him between my legs (oh such a young back and strong legs I had then!), he credits me with starting him on what has become a tremendously satisfying career/lifestyle as owner of Crested Butte Mountain Guides.
And for some reason, his lady of choice is almost always an athletic blond.
Last night Jay, Mara, Tony & I had fun looking through family photo albums. We have so many that each child has their own as well as several collective family albums. Tony even dug out some favorite photos of the two of us, looking incredibly young, of course, in Morocco where we met. And Jay was really surprised to see 26-year-old me in Amsterdam, a few months before I met Tony -- long blond hair, slim, all smiles. A very happy time.
Jay asked if I had any regrets, things I didn't get to do and really the only specific was not getting back to Morocco with Tony and the whole family. I guess that's not bad for 65 years.
Snows starting to fall now. Feels good to be typing away. Jay is only half-way through the visit, so till lots to look forward to.
A Downturn
Went out to dinner Saturday night with close friends and Mara and had a great time, but coughed all the way through the meal. They mostly pretended not to notice. When I was done eating, I slipped on the portable oxygen nasal cannula, but it didn't really stop the cough. Maybe the fact it was 15 degrees out had something to do with it?!
But it was a big step for me: first time out in public with what Hamilton calls my "baby bird" hair. No one fell over, so I'm getting pretty comfortable with super, super short hair and big earrings. Even the wait staff, that I've known for years, were very nice about it.
One funny thing: a country club member whom I know just to say hi to stopped by the table to say hello to everyone. He even said hi to Tony by name, looked at me, and never said a word. Don't know if he simply didn't know what to say or he didn't recognize me.
Anyway, Saturday night was a turning point. It was the first night I slept with oxygen. Surprisingly, the nasal cannula is very easy to use, not irritating, not even aware it is there. But I am hooked up pretty much all the time now. Just makes catching my breath after I move around (walk, get dressed, shower, go from room to room) much easier. I've got a 50' chord on it, so I can roam the whole upstairs at will. Luckily, the house design works well. Master bedroom, bathroom, my office, living room, dining room & kitchen are all one floor. Family room and other bedrooms downstairs. I just don't go there anymore. Not worth the effort of climbing back up the stairs. I can still manage the 10 steps from the front door, if I have oxygen on, go very slowly, and sit down as soon as I reach the top. (I give you these details to try to provide a picture of what the disease progression is all about, not to provide a running commentary on lung cancer care but because it obviously frames everything else.) Given how I felt Sunday, we never made it to the Lady Blacksmith Mombazo concert. Chris, Gwen and Garrett went, and brought me home a DVD of an earlier performance to watch.
But I lived to see the New Orleans Saint win a Super Bowl!!!! Who Dat? We Dat!! Very, very exciting.
In the evening, as I tire, I have started taking an Oxycodone to help suppress the cough. Mostly works. I still, though, have no pain beyond what a simple heating pad can handle, so there's still some good news.
But I felt a little like back to my having trouble getting my "sorry ass" out of bed.
Then I realized that when I hit a set-back, it takes me a while (hours, a few days) to find a new equilibrium, to figure out how I can keep doing at least some of what I want under the changed conditions. But rejiggering takes energy, takes a toll. It's tiring.
Sunday, Chris gave me a liter of saline, and while I don't feel the difference, the family said how much better I looked.
Monday, the wonderful hospice medical director came and did an incredibly thorough history, physical, and assessment, spending 75 minutes here. It was more thorough than I'd had since this all started. He tweaked some meds, suggested Ritalin for a little energy boost after hearing my frustration with fatigue, and some possible meds to help with coughing/breathing.
So fingers crossed it helps.
But it was a big step for me: first time out in public with what Hamilton calls my "baby bird" hair. No one fell over, so I'm getting pretty comfortable with super, super short hair and big earrings. Even the wait staff, that I've known for years, were very nice about it.
One funny thing: a country club member whom I know just to say hi to stopped by the table to say hello to everyone. He even said hi to Tony by name, looked at me, and never said a word. Don't know if he simply didn't know what to say or he didn't recognize me.
Anyway, Saturday night was a turning point. It was the first night I slept with oxygen. Surprisingly, the nasal cannula is very easy to use, not irritating, not even aware it is there. But I am hooked up pretty much all the time now. Just makes catching my breath after I move around (walk, get dressed, shower, go from room to room) much easier. I've got a 50' chord on it, so I can roam the whole upstairs at will. Luckily, the house design works well. Master bedroom, bathroom, my office, living room, dining room & kitchen are all one floor. Family room and other bedrooms downstairs. I just don't go there anymore. Not worth the effort of climbing back up the stairs. I can still manage the 10 steps from the front door, if I have oxygen on, go very slowly, and sit down as soon as I reach the top. (I give you these details to try to provide a picture of what the disease progression is all about, not to provide a running commentary on lung cancer care but because it obviously frames everything else.) Given how I felt Sunday, we never made it to the Lady Blacksmith Mombazo concert. Chris, Gwen and Garrett went, and brought me home a DVD of an earlier performance to watch.
But I lived to see the New Orleans Saint win a Super Bowl!!!! Who Dat? We Dat!! Very, very exciting.
In the evening, as I tire, I have started taking an Oxycodone to help suppress the cough. Mostly works. I still, though, have no pain beyond what a simple heating pad can handle, so there's still some good news.
But I felt a little like back to my having trouble getting my "sorry ass" out of bed.
Then I realized that when I hit a set-back, it takes me a while (hours, a few days) to find a new equilibrium, to figure out how I can keep doing at least some of what I want under the changed conditions. But rejiggering takes energy, takes a toll. It's tiring.
Sunday, Chris gave me a liter of saline, and while I don't feel the difference, the family said how much better I looked.
Monday, the wonderful hospice medical director came and did an incredibly thorough history, physical, and assessment, spending 75 minutes here. It was more thorough than I'd had since this all started. He tweaked some meds, suggested Ritalin for a little energy boost after hearing my frustration with fatigue, and some possible meds to help with coughing/breathing.
So fingers crossed it helps.
Wednesday, February 3, 2010
Steroid Kicks In
Well, the day after I wrote I felt like a lazy teenager wanting to sleep till noon, the steroid kicked in and I was up at 6:30 a.m., in the kitchen cooking my own breakfast at 7. Seems both the energy and the appetite stimulant just needed a little more time to work. So I am feeling good again, trying to get out and about as much as possible while I can, although I still get chauffeured most places I go, usually by Tony. I am going to the personal trainer again several times a week, and we have tickets for a Ladysmith Black Mombazo concert Sunday afternoon (have to be home in time to root for the Saints in the Super Bowl).
I am still pain free, for the moment. Any back discomfort I have from the adrenal tumor responds very nicely to a heating pad. Yesterday, just to try it out, I put the oxygen on through a nasal canula. But I was just sitting while I did it, which is not when I tend to get short of breath. Really, I guess to test it I should have Tony hook up the 50' tubing and walk around the house, or try coming up the front steps, which does make me breathless. But so far, once I sit down, I recover full breath within a few minutes. So I guess I'll wait a while longer on that.
Chris has done a wonderful job of handling the few hydration issues I have. Sunday morning he came over and ran a saline IV drip for a couple of hours and brought his guitar to serenade me. He has done a fair amount of performing, has a great voice and a huge repertoire. It was really wonderful.
Hamilton has been here for a week. With our wifi, he can work from here, although he heads back to New Orleans tomorrow for meetings. Last weekend, his close friend (the best man at his wedding) and his fiancee (they are to be married on Tony's and my anniversary) along with their long-time family cook-housekeeper-2nd mother (there's really no single word to describe her), brought over a fabulous four-course meal that we devoured. Then, Sunday, Rob & Ellie and the huggables came up, and along with the local Ghent crew and a really good friend of Mara's, we were 13 for dinner. It was great.
I really can't imagine how hard it must be for families when a loved one just suddenly drops dead. This time we are having together is so, so precious. It gives us the opportunity to express what we mean to each other, how we have impacted each others' lives. I am really blown away by some of the things my children have told me about the ways I have affected them. And amazingly, they seem only to remember the good things, or at least that's all they are sharing. Lots of tears, of course, but it's all part of the connectedness. Very powerful.
But we also have our light moments. We had a great time last night playing various favorite songs, to make selections for a memorial service. It wasn't maudlin at all. Just great fun. And after all, I like planning parties, so I love having a voice in it.
Off to the city tomorrow (Chris is taking me) to visit my 90-year-old mother, who still lives on her own. Figure I need to go while I still can.
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