Returning to Florida for the month of February is off the table. It just got way too complicated, trying to prepare for all the possible medical issues. I don't really feel up to the travel and it suddenly seemed crazy to be driving everyone nuts trying to make this happen. That's why we went for two weeks in January, fearing that February was a long way away.
But to back up a bit, Tony & I were set to fly home from our two-week stay Jan. 19th. But that night, for the first (and so far the last time), I had lung pain. So I took some morphine. Turns out, morphine doesn't quite agree with me. It took care of the pain, but produced vomiting, so much so that I couldn't keep the anti-nausea pill down. I finally managed and off we headed to the airport. I was in a bit of fog. But the pill didn't quite work, and the movement of getting up out of the wheelchair to walk onto the plane started to produce retching. I made it to the bathroom, leaving Tony to argue with the steward that we should not be thrown off the plane because I was too sick to travel! Tony managed to convince them, and the flight attendants were very relieved to just see me sleep the whole way, or try to -- with a three-year-old kicking my seat and an 18-month-old shrieking. Parents were very apologetic, but jeeesh. Don't people know how to control their kids?? (I sound like a grumpy old lady, but I felt like one.)
Mara picked us up at LaGuardia (her timing great driving back with Ellie from packing up her place in Austin, TX) and the ride home was uneventful. Dear, dear Chris literally had the home-fires burning, even hot packs in my bed. He greeted me with an IV of saline that perked me right up.
But clearly there were new issues. Chris was pushing for me to start taking some palliative drugs, to help extend quality of life, and I was resisting. I finally realized that my resistance was simply not wanting to acknowledge that I had gone somewhat downhill. Once I realized that, Tony, Mara, Chris & I met with my primary care doctor (no more need for the oncologist) and last Friday night, I started on a steroid. Its purpose is to alleviate nausea, reduce inflammation around the tumors, since it is often the inflammation rather than the tumor that causes problems. It was also hoped it would boost appetite and energy and perhaps help with the occasional shortness of breath. So far, it hasn't done those things, but I gather it yet may.
And although the steroid "has no real side effects," I also walked out with four other medications -- to treat potential side effects. It's such a cascading effect. One drug requires the balancing of another drug and so on.
Today, oxygen was delivered, so here it is here for a hopefully far-future need. Tomorrow, the hospice in-take nurse makes her first official visit to sign me up, in part so all this stuff will be covered by Medicare. Would you believe that a Stage IV lung cancer patient can't get oxygen -- unless I'm officially in hospice. Oh our wonderful health care system.
So I am not taking any pain meds, none needed, thank goodness. But mornings are hard. I just simply have no energy, no appetite. By afternoon, I feel human and can get off the bed and do some simple stuff around the house. It really harkens back to my teenage days. I was always a very, very late sleeper -- noon if my parents would let me. So once again, I am not a "morning person." So I'll just have to plan my outings for the afternoon & early evening. We are hoping to do some fun stuff in the city as well as around here.
Meanwhile, all the kids who were coming to Florida are changing reservations and heading home for a visit, so once again, it will be a wonderful steady stream of children & grandchildren. I think everyone is anxious to come while I am still in decent shape.
Tuesday, January 26, 2010
Sunday, January 24, 2010
Showered with Gifts
It started with flowers and food. Within days of leaving the hospital in September, the gifts started pouring in. There were so many supportive, funny cards that although we have a lot of shelf space in the bedroom, we ran out of room.
There were letters and emails from my children's friends, reminiscing about time spent here as a child, and how much it meant to them. I've heard from now-grown women about how I was a role model -- something I was totally unaware of at the time but is obviously very gratifying to learn.
And the gifts just keep on coming, some from people I've never met. There's the letter and purple wristbands that say "Pray for a Better Day" from the cousin of a friend of one of my sons; the hand-knit shawl from a colleague's boyfriend's mother; a book of sayings and a necklace from a friend I've never met of another son; a hand-knit hat from a good friend of one of my daughters and a scarf and great photo from another of her friends, as well as an angel from another. A fur hat, truffles and a book of women's powerful quotes came from an old friend of mine and a warm, cuddly throw from another friend. One of my son's girlfriends gave me a wondeful, special bed pillow that I use all the time.
I have also heard from newspaper colleagues both from The Independent days and from the 1990s when I served on the board of the NY Press Assoc.
At Christmas came a premium bottle of Scotch from a friend of my son along with a letter reminiscing about how they went hiking & camping in the Adirondacks over Xmas break for a number of years, returning to spread all their frozen gear in front of the woodstove and to chow-down on the hearty stew I would have waiting.
Daughter Ellie presented me with a gorgeous large-format 40-page photo book of the "huggables" inviting "Grandma to Come Play."
And Chris's boys -- Casey & CJ -- presented me with my biography, also large-format with text and photos. Chris had taken them down to the city to interview my mother supposedly for a school assignment. Turns out it was really to get my childhood-through-young-adult bio and photos. What they put together is amazing, complete with a cover collage of lots of family pix.
Just yesterday at a wonderful pot luck lunch with a dozen of my golf buddies, one of them brought me chocolates and a funny pet cartoon book. I get a steady stream of funny internet jokes as well.
I don't think a week's gone by when I haven't had fresh flowers to look at, even in Florida, those courtesy of Hamilton's colleagues in New Orleans, many from my golf group.
I have received lots of advice, again not all from people I know but who know one of my kids, about alternative cancer therapies.
The out-pouring is just amazing to me. I have never been the focus of so much energy and caring. It feels overwhelming at times. The closest thing I can compare it to in my experience is when I was pregnant for the first time. Since I worked at an abortion clinic in NYC, it was very special for the whole, size-able staff -- a wanted pregnancy. To celebrate, my boss threw a huge baby shower -- whole staff invited -- at the Top of the Sixes restaurant and most everyone came. Afterwards, Tony and I piled into the biggest taxi available, completely surrounded by gifts.
That's how I feel now, surrounded by support and caring.
There were letters and emails from my children's friends, reminiscing about time spent here as a child, and how much it meant to them. I've heard from now-grown women about how I was a role model -- something I was totally unaware of at the time but is obviously very gratifying to learn.
And the gifts just keep on coming, some from people I've never met. There's the letter and purple wristbands that say "Pray for a Better Day" from the cousin of a friend of one of my sons; the hand-knit shawl from a colleague's boyfriend's mother; a book of sayings and a necklace from a friend I've never met of another son; a hand-knit hat from a good friend of one of my daughters and a scarf and great photo from another of her friends, as well as an angel from another. A fur hat, truffles and a book of women's powerful quotes came from an old friend of mine and a warm, cuddly throw from another friend. One of my son's girlfriends gave me a wondeful, special bed pillow that I use all the time.
I have also heard from newspaper colleagues both from The Independent days and from the 1990s when I served on the board of the NY Press Assoc.
At Christmas came a premium bottle of Scotch from a friend of my son along with a letter reminiscing about how they went hiking & camping in the Adirondacks over Xmas break for a number of years, returning to spread all their frozen gear in front of the woodstove and to chow-down on the hearty stew I would have waiting.
Daughter Ellie presented me with a gorgeous large-format 40-page photo book of the "huggables" inviting "Grandma to Come Play."
And Chris's boys -- Casey & CJ -- presented me with my biography, also large-format with text and photos. Chris had taken them down to the city to interview my mother supposedly for a school assignment. Turns out it was really to get my childhood-through-young-adult bio and photos. What they put together is amazing, complete with a cover collage of lots of family pix.
Just yesterday at a wonderful pot luck lunch with a dozen of my golf buddies, one of them brought me chocolates and a funny pet cartoon book. I get a steady stream of funny internet jokes as well.
I don't think a week's gone by when I haven't had fresh flowers to look at, even in Florida, those courtesy of Hamilton's colleagues in New Orleans, many from my golf group.
I have received lots of advice, again not all from people I know but who know one of my kids, about alternative cancer therapies.
The out-pouring is just amazing to me. I have never been the focus of so much energy and caring. It feels overwhelming at times. The closest thing I can compare it to in my experience is when I was pregnant for the first time. Since I worked at an abortion clinic in NYC, it was very special for the whole, size-able staff -- a wanted pregnancy. To celebrate, my boss threw a huge baby shower -- whole staff invited -- at the Top of the Sixes restaurant and most everyone came. Afterwards, Tony and I piled into the biggest taxi available, completely surrounded by gifts.
That's how I feel now, surrounded by support and caring.
Sunday, January 17, 2010
Glitches in Paradise
We head home from Florida in two days. Despite record-breaking cold at night, we had delightful warm, sunny afternoons on the deck. We got to the beach a couple of times, although after walking the few blocks when we first arrived, we've been driving over. It just seems easier (and easier on Tony's knees, too), but to me it signals that things are going in the wrong direction.
In fact, I've had several such signals, particularly in the last few days. We had a delicious dinner a few nights ago at the one really good restaurant on the beach, but at home a couple of hours later, I got to coughing so hard that I tossed up my dinner, too.
Chris (my son who is a hospice case manager) keeps urging me to take the morphine I have, that it will help supress the cough as well as handle any pain. But I am very reluctant. It's hard not to see taking morphine as yet another sign that my condition is deteriorating.
Friday night, for the first time ever, I had to use the heating pad all night to keep my back discomfort (presumably the adrenal gland tumor) at bay. And then I started using the pad again middle of the afternoon on Saturday, far earlier than my more usual night-time use. I took an oxycodone pain pill Saturday early evening and again at midnight and they definitely helped. They also seem to supress the cough, so a nice side benefit. As I sit here writing this, all I am doing for my back discomfort is using a pillow on the chair.
Traveling Tuesday may be a little tricky. Tony went & got a heat wrap for me to try out today, to see if that might substitute for the heating pad while traveling. We have a non-stop to LaGuardia, but then the car ride home. And he'd like me to try the morphine, so we have some idea of what we've got.
Meanwhile, it is unexpectedly sunny this morning and tomorrow is supposed to be great, so a few more hits of glorious weather before we head north for 10 days. We are already plotting out the drive back down. Basically, Tony's idea is to take it in very small bites, three hours at most in the car in one shot. At that rate, we'll have some leisurely lunches and dinners and take 3 1/2 days for the 22-hour trip.
Jayson as well as Hamilton & Annette have already booked their plane tickets to come see us in February. Fingers crossed I am up to it.
One positive: my hair is definitely growing. I'm sure it will be months before I can give up my head scarves, but it is definitely coming in -- soft & white!
In fact, I've had several such signals, particularly in the last few days. We had a delicious dinner a few nights ago at the one really good restaurant on the beach, but at home a couple of hours later, I got to coughing so hard that I tossed up my dinner, too.
Chris (my son who is a hospice case manager) keeps urging me to take the morphine I have, that it will help supress the cough as well as handle any pain. But I am very reluctant. It's hard not to see taking morphine as yet another sign that my condition is deteriorating.
Friday night, for the first time ever, I had to use the heating pad all night to keep my back discomfort (presumably the adrenal gland tumor) at bay. And then I started using the pad again middle of the afternoon on Saturday, far earlier than my more usual night-time use. I took an oxycodone pain pill Saturday early evening and again at midnight and they definitely helped. They also seem to supress the cough, so a nice side benefit. As I sit here writing this, all I am doing for my back discomfort is using a pillow on the chair.
Traveling Tuesday may be a little tricky. Tony went & got a heat wrap for me to try out today, to see if that might substitute for the heating pad while traveling. We have a non-stop to LaGuardia, but then the car ride home. And he'd like me to try the morphine, so we have some idea of what we've got.
Meanwhile, it is unexpectedly sunny this morning and tomorrow is supposed to be great, so a few more hits of glorious weather before we head north for 10 days. We are already plotting out the drive back down. Basically, Tony's idea is to take it in very small bites, three hours at most in the car in one shot. At that rate, we'll have some leisurely lunches and dinners and take 3 1/2 days for the 22-hour trip.
Jayson as well as Hamilton & Annette have already booked their plane tickets to come see us in February. Fingers crossed I am up to it.
One positive: my hair is definitely growing. I'm sure it will be months before I can give up my head scarves, but it is definitely coming in -- soft & white!
Saturday, January 9, 2010
Holiday Celebration & Off to Florida
First off, the daily half-hour sessions with my personal trainer, Jenster, proved right on target. A little aerobics, a little weights & some stretching every day really helped energize me. I am feeling better than any time since the chemo started back in mid-October.
Our family Xmas celebration over New Year's weekend was fabulous. Jayson surprised me & Tony by flying in for two days. When we woke up Thursday morning, there he was! Mara had picked him up at the airport at midnight. I just burst into tears when I saw him. It meant the entire family, all four generations, was together for the first time ever. Even my mother enjoyed herself and was enjoyable company. Jayson spent two days traveling for a two-day visit. His return trip took him 18 hours to get home. It was very, very special. So we had a great few days, full of laughter, great food and lots of love.
In particular, I had some time with both Jay and Ellie, who ended up staying an extra night because of bad weather after everyone left. (Her husband -- an editor at The Wall Street Journal -- had to work Sunday so he left Saturday night.) Ellie asked me what I wanted to be remembered for, which really gave me pause. She and Mara and Tony and I talked about a memorial service and whether they needed to have one. The consensus was a resounding yes. Tony & I have been talking about what music would be played. It doesn't feel macabre to me to discuss all this. After all, I was always central to planning big family gatherings. I also expect to make notes at some point towards an obit, since there may be details and dates that would be difficult for others to reconstruct.
Monday morning I had my last Columbia County Bounty board meeting, turning over the checkbook and other duties to the various board members. I think the long-term vision for Bounty is very promising, using this as an opportunity to find an Exec. Dir. who would run both Columbia & Dutchess Bounties, to lay the groundwork for an eventual Hudson Valley Bounty.
Then, late Monday afternoon, we hitched a ride with Ellie & the huggables to a LaGuardia hotel, since we had a morning flight Tuesday and were worried about heightened airport security. Of course, we sailed through security in less time than it normally takes, and ended up waiting a long time for our flight, which was delayed an hour waiting for crew to arrive.
But thanks to Jenster and my daily workouts, the travel went fine. I had no problem with the long walk at the Ft. Myers airport from the gate to the car rental, and no problem with my half of supermarket shopping on the way to the house. I finally ran out of steam when I had collected my half, and left the basket for Tony to deal with while I waited in the car.
Weather here in Ft. Myers Beach, and throughout Florida this week, has been record-breaking cold at night, but afternoons have been warm & sunny, perfect for sitting out on the deck. Today is cold & rainy, giving me the incentive to work on my blog.
We are here till the 19th, then home for about a week, then we drive down for the month of February (fingers crossed).
My nagging cough, that I've had now for months, must be related to the cancer. Every time I asked a doctor, they would shrug. But Dr. Sunkin pointed out that if it stopped in Florida, we would know it was environmental. Well, it stops while I am in the sun (everything is better in sun), but then resumes, particularly in the evening, as I get tired. Luckily, I don't cough at night, at least not yet.
We met with Sunkin before coming down. I got my chart and some just-in-case drugs (morphine if needed for pain & an anti-nausea drug). I also found a major cancer care center just 30 minutes from the house, should I need something else. And Sunkin urged us to call him if we have any issues. He thought he could get an Rx filled here, if needed, that Florida's regs are not as tough as New York's. So that was comforting.
Meanwhile, all is good here. Tony got me a Kindle since the book I was reading at home, "The Clinton Tapes" by Taylor Branch, is 700-plus pages, way too heavy for me to carry to the beach. I downloaded it to the Kindle, which is really a marvel. All five kids check in pretty much daily, we are cooking up some good meals, and just soaking up sun. Life is good.
Our family Xmas celebration over New Year's weekend was fabulous. Jayson surprised me & Tony by flying in for two days. When we woke up Thursday morning, there he was! Mara had picked him up at the airport at midnight. I just burst into tears when I saw him. It meant the entire family, all four generations, was together for the first time ever. Even my mother enjoyed herself and was enjoyable company. Jayson spent two days traveling for a two-day visit. His return trip took him 18 hours to get home. It was very, very special. So we had a great few days, full of laughter, great food and lots of love.
In particular, I had some time with both Jay and Ellie, who ended up staying an extra night because of bad weather after everyone left. (Her husband -- an editor at The Wall Street Journal -- had to work Sunday so he left Saturday night.) Ellie asked me what I wanted to be remembered for, which really gave me pause. She and Mara and Tony and I talked about a memorial service and whether they needed to have one. The consensus was a resounding yes. Tony & I have been talking about what music would be played. It doesn't feel macabre to me to discuss all this. After all, I was always central to planning big family gatherings. I also expect to make notes at some point towards an obit, since there may be details and dates that would be difficult for others to reconstruct.
Monday morning I had my last Columbia County Bounty board meeting, turning over the checkbook and other duties to the various board members. I think the long-term vision for Bounty is very promising, using this as an opportunity to find an Exec. Dir. who would run both Columbia & Dutchess Bounties, to lay the groundwork for an eventual Hudson Valley Bounty.
Then, late Monday afternoon, we hitched a ride with Ellie & the huggables to a LaGuardia hotel, since we had a morning flight Tuesday and were worried about heightened airport security. Of course, we sailed through security in less time than it normally takes, and ended up waiting a long time for our flight, which was delayed an hour waiting for crew to arrive.
But thanks to Jenster and my daily workouts, the travel went fine. I had no problem with the long walk at the Ft. Myers airport from the gate to the car rental, and no problem with my half of supermarket shopping on the way to the house. I finally ran out of steam when I had collected my half, and left the basket for Tony to deal with while I waited in the car.
Weather here in Ft. Myers Beach, and throughout Florida this week, has been record-breaking cold at night, but afternoons have been warm & sunny, perfect for sitting out on the deck. Today is cold & rainy, giving me the incentive to work on my blog.
We are here till the 19th, then home for about a week, then we drive down for the month of February (fingers crossed).
My nagging cough, that I've had now for months, must be related to the cancer. Every time I asked a doctor, they would shrug. But Dr. Sunkin pointed out that if it stopped in Florida, we would know it was environmental. Well, it stops while I am in the sun (everything is better in sun), but then resumes, particularly in the evening, as I get tired. Luckily, I don't cough at night, at least not yet.
We met with Sunkin before coming down. I got my chart and some just-in-case drugs (morphine if needed for pain & an anti-nausea drug). I also found a major cancer care center just 30 minutes from the house, should I need something else. And Sunkin urged us to call him if we have any issues. He thought he could get an Rx filled here, if needed, that Florida's regs are not as tough as New York's. So that was comforting.
Meanwhile, all is good here. Tony got me a Kindle since the book I was reading at home, "The Clinton Tapes" by Taylor Branch, is 700-plus pages, way too heavy for me to carry to the beach. I downloaded it to the Kindle, which is really a marvel. All five kids check in pretty much daily, we are cooking up some good meals, and just soaking up sun. Life is good.
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