Dec 23: Martha
So much has happened in the last few days that it's hard to know where to start. You'll soon understand why there hasn't been time to post. So I'll try to hit the high/low points. I've been asking everyone to check in here rather than answering individually, but that only makes sense if there are actually updates!
Friday, Dec 18, the oncologist told John he thought Martha should be in short-term hospitce. How short-term, you ask? Two weeks.
On Saturday she had another CT of her torso, not the brain, which requires an MRI. All the areas where there was cancer have advanced more. Every area is worse, except the liver, which is the same. But all the bony areas, the pancreas, adrenal, lung and lymph nodes: all worse. This despite the Taxotere chemo.
I arrived on Sunday, Dec 20, too late to get to Emma's ballet. I was just so backed up from being here before, and too much to do, even with Friday and Saturday being days off. The blizzard was good in some ways because it meant not leaving the house, but there was still more than could be done in one day. Additionally, my boss had wanted me to do on call Sunday night and I asked to do Saturday night instead. So more tired, not as efficient, just couldn't get going in time.
Martha was technically discharged from the hospital Sunday, taken by ambulance to the performance, then brought back to be technically re-admitted. By all accounts it was a wonderful and moving experience for all. The performance was great, Emma was terrific, and lots of people were able to give their love and support to Martha in person. There was a lot of emotion, however, as people realized how much worse she was and that the end is near. But the flush of excitement and happiness was still glowing on her face as they wheeled her into the hospital room where I was waiting for them all.
Monday she was tired, but stable. I got there first, alone. She looked at me and asked how John and the kids were holding up, which she hasn't said before to anyone. Then she looked at me and said "I'm starting to feel like I might not get better." I said "No, you might not." Of importance here is the use of the word 'feel' instead of think. You can logically think you might die, but when you feel it then it's different--it's from your core. The many times around my illness that I felt I was dying were very distinct, especially with so many doctors telling me (wrongly) that I wasn't dying. But I knew, you just know, you feel it. Trying to expand the thought process, I reminded her of my OCD tendency to want every possible outcome covered, asked if she wanted to dictate letters to John and the kids. She looked away and said "I know I should...." looked at me and said "I'm not ready yet." "That's OK," I replied, "I just wanted it out there for you to think about." It's the only time she's ever expressed the possibility that she isn't going to get better. But nothing further was said, because a nurse came in for routine vitals and the moment was lost.
Later that day John and I talked to the oncologist at length about more chemo. Did the Taxotere help? Who knows? Maybe it slowed things down, maybe not. So the oncologist said that it didn't make any sense to give another round, because it wasn't even keeping it in check. So he discussed another drug, Navelbine, that might help, but expressed serious concerns that her reaction would be bad in her weakened condition. After many questions, John and I presented it to Martha, emphasizing the pros and cons. Adding to the pressure was the doctor's opinion that by next week she would be too weak to even consider it, so it was really only now that it was even an option. John had bad feelings about the side effects, my feeling was that since it was now or never, that if she died before the two weeks he would always wonder if it would have helped. But the decision was Martha's. And she wanted the chemo. It was given late Monday afternoon.
Tuesday, yesterday, John and Fernando (John's step brother) got to the hospital around 10 am, I arrived at 11, by which time Fernando had decided to take the day off and have lunch with friends in NYC. (We're so close it's less than an hour to Grand Central Station.) The labs from the morning were truly horrible--the white count was 67,000 (normal is up to 10,000) John told me her breathing seemed labored and she seemed really out of it, then stepped into the hallway to make some phone calls. It took only a minute to determine that she was exhibiting Cheyne-Stokes breathing, a pattern where they breath but then have long pauses, then fast breathing to slower breathing to long pauses. It's how you breath in the hours before dying. In the next hour and a half the pauses got longer and longer, she was only breathing 5-6 times a minute and was less and less arousable. I looked at John and said "I think it's time to call the kids." He stayed with Martha while I made the called Lyle. God, that was hard.
After I was back in the room and Lyle and Emma were on their way, John stepped out to call her father and brothers. She had a moment of lucidity and I said "Martha, you need to stay with me. You need to stay here with me until the kids get here. Just stay with me a little longer." She focused on me and asked "Hang on?" "Yes", I said, "just a little while longer, until the kids get here." She nodded.
There are not enough adjectives to describe how truly terrible it was to watch the kids see their mother, experience her lack of responsiveness, hear her labored breathing. She had a few moments of recognition with both of them, but then became less and less conscious. She would open her eyes, stare at Emma lying next to her, holding her hand, but there was no expression, no connection in her gaze. It was totally detached. Lyle was on her bad side, the right side with the arm swollen like a balloon and so painful, his grief more contained. Emma kept telling her she loved her, kept touching her face.
For the next couple of hours it was just the four of us with Martha, listening, watching. There would be 12-15 second pauses and we would all sit forward, hold our breaths. Then she would gasp again and start breathing. The three of them kept looking to me, asking how much longer. I said 6-8-10 hours, maybe? There was an issue with paperwork, she needed to be a DNR before the morphine drip could be started. Her brow would wrinkle, she would rub her face, which John had noticed before meant she was troubled and in pain. Her temperature was almost 104. It was torture, watching her, seeing John and the kids suffer with her.
Other family started arriving. Her brothers, her father, her half-sister, a friend, nephews. All touching her, telling her how much they loved her. And something incredible happened over the next several hours. It seemed like the more people that came in and out, the better Martha's breathing would get. And then she started having more moments of lucidity. She could answer a simple question, but just one. At one point she looked up at me as I was wiping her face with a cool cloth and said very clearly "The music is so pretty! It's such pretty music!" There wasn't any music the rest of us could hear, but this is a well-documented phenomenon, called 'Celestial Music', heard by the dying. "What are they playing?" I asked. She didn't answer, but had a pleasant dreamy look on her face. "It's just pretty, huh?" I said, she nodded yes and then stopped responding for a while.
But then again she just got better and better. By 9 pm she was sipping soup, talking a little more. After over 10 hours of almost dying, she started perking up. Fernando, bless him, came back to the hospital and stayed with her, awake, all night. He told us this evening that he offered to hold her hand, which she usually doesn't like. But she did, and he said all her tremors stopped. If he let go her hand, she would get restless, start flailing around, but quiet again when he would pick her hand up. He stayed with her like that, for 5 hours, through the early morning hours when many people die, just holding her hand while she slept. There is no doubt in my mind that the human contact anchored her in this world. I think it saved her life, at least for another little while.
This morning she was sitting up, pretty bright eyed, responding and interacting with us. Her white count dropped by 30,000, other numbers improved as well. Is there an explanation? I'm not sure. But she's much better today, although some nausea and vomiting started later this evening. The oncologist thinks it's from the morphine drip, is now giving her regular medicine to help.
John, Fernando and I are all exhausted. The strain is evident, yesterday was truly horrible. The emotional roller coaster, trying to support each other and the kids has taken a toll. Fernando has gotten only a few hours nap, John got about 6.5 hours last night, I was forced by my body to get a full 8 hrs. Other family members stepped in tonight and we stayed at the house from late afternoon on. As soon as this is finished, even though not polished, I'm going to bed. Fernando already went to his space in the basement, John is resting upstairs. Emma went with one of her uncles to the hospital and Lyle is hiding his pain with a poker game at a friend's. I'm going to take a quick shower and crash on my aerobed in the living room with ear plugs in.
Tomorrow the full effects of the newest chemo will hit, seem to have already started. And it will be Christmas Eve. We're already planning total coverage, not leaving her alone, moving the holiday into the hospital room. There is no doubt in any of our minds that through sheer force of will Martha will make it through the next few days. And then it will be a matter of seeing her response to the new chemo, hoping it will buy a few more days or weeks with more good moments.
Prayers and healing vibes for all of us are gratefully accepted.
Thanks for checking in, Laurie
Friday, Dec 18, the oncologist told John he thought Martha should be in short-term hospitce. How short-term, you ask? Two weeks.
On Saturday she had another CT of her torso, not the brain, which requires an MRI. All the areas where there was cancer have advanced more. Every area is worse, except the liver, which is the same. But all the bony areas, the pancreas, adrenal, lung and lymph nodes: all worse. This despite the Taxotere chemo.
I arrived on Sunday, Dec 20, too late to get to Emma's ballet. I was just so backed up from being here before, and too much to do, even with Friday and Saturday being days off. The blizzard was good in some ways because it meant not leaving the house, but there was still more than could be done in one day. Additionally, my boss had wanted me to do on call Sunday night and I asked to do Saturday night instead. So more tired, not as efficient, just couldn't get going in time.
Martha was technically discharged from the hospital Sunday, taken by ambulance to the performance, then brought back to be technically re-admitted. By all accounts it was a wonderful and moving experience for all. The performance was great, Emma was terrific, and lots of people were able to give their love and support to Martha in person. There was a lot of emotion, however, as people realized how much worse she was and that the end is near. But the flush of excitement and happiness was still glowing on her face as they wheeled her into the hospital room where I was waiting for them all.
Monday she was tired, but stable. I got there first, alone. She looked at me and asked how John and the kids were holding up, which she hasn't said before to anyone. Then she looked at me and said "I'm starting to feel like I might not get better." I said "No, you might not." Of importance here is the use of the word 'feel' instead of think. You can logically think you might die, but when you feel it then it's different--it's from your core. The many times around my illness that I felt I was dying were very distinct, especially with so many doctors telling me (wrongly) that I wasn't dying. But I knew, you just know, you feel it. Trying to expand the thought process, I reminded her of my OCD tendency to want every possible outcome covered, asked if she wanted to dictate letters to John and the kids. She looked away and said "I know I should...." looked at me and said "I'm not ready yet." "That's OK," I replied, "I just wanted it out there for you to think about." It's the only time she's ever expressed the possibility that she isn't going to get better. But nothing further was said, because a nurse came in for routine vitals and the moment was lost.
Later that day John and I talked to the oncologist at length about more chemo. Did the Taxotere help? Who knows? Maybe it slowed things down, maybe not. So the oncologist said that it didn't make any sense to give another round, because it wasn't even keeping it in check. So he discussed another drug, Navelbine, that might help, but expressed serious concerns that her reaction would be bad in her weakened condition. After many questions, John and I presented it to Martha, emphasizing the pros and cons. Adding to the pressure was the doctor's opinion that by next week she would be too weak to even consider it, so it was really only now that it was even an option. John had bad feelings about the side effects, my feeling was that since it was now or never, that if she died before the two weeks he would always wonder if it would have helped. But the decision was Martha's. And she wanted the chemo. It was given late Monday afternoon.
Tuesday, yesterday, John and Fernando (John's step brother) got to the hospital around 10 am, I arrived at 11, by which time Fernando had decided to take the day off and have lunch with friends in NYC. (We're so close it's less than an hour to Grand Central Station.) The labs from the morning were truly horrible--the white count was 67,000 (normal is up to 10,000) John told me her breathing seemed labored and she seemed really out of it, then stepped into the hallway to make some phone calls. It took only a minute to determine that she was exhibiting Cheyne-Stokes breathing, a pattern where they breath but then have long pauses, then fast breathing to slower breathing to long pauses. It's how you breath in the hours before dying. In the next hour and a half the pauses got longer and longer, she was only breathing 5-6 times a minute and was less and less arousable. I looked at John and said "I think it's time to call the kids." He stayed with Martha while I made the called Lyle. God, that was hard.
After I was back in the room and Lyle and Emma were on their way, John stepped out to call her father and brothers. She had a moment of lucidity and I said "Martha, you need to stay with me. You need to stay here with me until the kids get here. Just stay with me a little longer." She focused on me and asked "Hang on?" "Yes", I said, "just a little while longer, until the kids get here." She nodded.
There are not enough adjectives to describe how truly terrible it was to watch the kids see their mother, experience her lack of responsiveness, hear her labored breathing. She had a few moments of recognition with both of them, but then became less and less conscious. She would open her eyes, stare at Emma lying next to her, holding her hand, but there was no expression, no connection in her gaze. It was totally detached. Lyle was on her bad side, the right side with the arm swollen like a balloon and so painful, his grief more contained. Emma kept telling her she loved her, kept touching her face.
For the next couple of hours it was just the four of us with Martha, listening, watching. There would be 12-15 second pauses and we would all sit forward, hold our breaths. Then she would gasp again and start breathing. The three of them kept looking to me, asking how much longer. I said 6-8-10 hours, maybe? There was an issue with paperwork, she needed to be a DNR before the morphine drip could be started. Her brow would wrinkle, she would rub her face, which John had noticed before meant she was troubled and in pain. Her temperature was almost 104. It was torture, watching her, seeing John and the kids suffer with her.
Other family started arriving. Her brothers, her father, her half-sister, a friend, nephews. All touching her, telling her how much they loved her. And something incredible happened over the next several hours. It seemed like the more people that came in and out, the better Martha's breathing would get. And then she started having more moments of lucidity. She could answer a simple question, but just one. At one point she looked up at me as I was wiping her face with a cool cloth and said very clearly "The music is so pretty! It's such pretty music!" There wasn't any music the rest of us could hear, but this is a well-documented phenomenon, called 'Celestial Music', heard by the dying. "What are they playing?" I asked. She didn't answer, but had a pleasant dreamy look on her face. "It's just pretty, huh?" I said, she nodded yes and then stopped responding for a while.
But then again she just got better and better. By 9 pm she was sipping soup, talking a little more. After over 10 hours of almost dying, she started perking up. Fernando, bless him, came back to the hospital and stayed with her, awake, all night. He told us this evening that he offered to hold her hand, which she usually doesn't like. But she did, and he said all her tremors stopped. If he let go her hand, she would get restless, start flailing around, but quiet again when he would pick her hand up. He stayed with her like that, for 5 hours, through the early morning hours when many people die, just holding her hand while she slept. There is no doubt in my mind that the human contact anchored her in this world. I think it saved her life, at least for another little while.
This morning she was sitting up, pretty bright eyed, responding and interacting with us. Her white count dropped by 30,000, other numbers improved as well. Is there an explanation? I'm not sure. But she's much better today, although some nausea and vomiting started later this evening. The oncologist thinks it's from the morphine drip, is now giving her regular medicine to help.
John, Fernando and I are all exhausted. The strain is evident, yesterday was truly horrible. The emotional roller coaster, trying to support each other and the kids has taken a toll. Fernando has gotten only a few hours nap, John got about 6.5 hours last night, I was forced by my body to get a full 8 hrs. Other family members stepped in tonight and we stayed at the house from late afternoon on. As soon as this is finished, even though not polished, I'm going to bed. Fernando already went to his space in the basement, John is resting upstairs. Emma went with one of her uncles to the hospital and Lyle is hiding his pain with a poker game at a friend's. I'm going to take a quick shower and crash on my aerobed in the living room with ear plugs in.
Tomorrow the full effects of the newest chemo will hit, seem to have already started. And it will be Christmas Eve. We're already planning total coverage, not leaving her alone, moving the holiday into the hospital room. There is no doubt in any of our minds that through sheer force of will Martha will make it through the next few days. And then it will be a matter of seeing her response to the new chemo, hoping it will buy a few more days or weeks with more good moments.
Prayers and healing vibes for all of us are gratefully accepted.
Thanks for checking in, Laurie
posted by Laurie @ 8:58 PM
1 Comments:
At 4:01 PM,
Anonymous said…
hey, sweetie -
sorry I've been out of touch in reading this the last few days... it seems almost a shame to have had such a good time with my family while you were having such a stressful time with yours.. but loving comes in many different ways.. and I'm glad you have the time with Martha, John, and the kids to keep you going...
love you - miss you... praying for you...
Carol
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