We spent part of the weekend talking about what to do -- go for the 2nd line chemo even though the 1st line failed, or bail on the high tech medical route and focus on strengthening my own defenses. We talked with all the kids -- Mara & Ellie wanting to try anything that might possibly work, Hamilton & Chris opting for an end to the chemo route. I didn't really get to talk to Jayson, working 14-hour days in the Colorado back-country, until Monday night, after the decision was made.
In the end, we opted to forgo any chemo. I am still relatively symptom free, thank goodness. And I realized I had absolutely no faith the 2nd line chemo would do anything, except make me tired. I think it is important to believe what you are doing will work, and I sure didn't believe it would help.
The other part of the decision, for me, that Tony helped clarify, is that I don't like the passive patient role, being done to, having the drugs infused, being poked & scanned. Anyone who knows me even the slightest bit knows passivity is not my thing. I like to take charge, to have a sense of control. So I am working on some diet modification (I really can't abide a full macrobiotic diet, in large part because of what you can't eat, not what you eat), and I've already booked with my personal trainer a slew of almost daily half-hour sessions, to build up my strength & stamina.
Then, Leo sun-worshiper that I am, we booked two weeks in Florida in early January and also took a deep breath and committed to a month in February, hoping I'll be in shape for it. Both trips certainly give me something to look forward to, and various kids may come visit some. We are hoping Mara will come with us for February. (She'll probably use our Jan. trip to go back to Austin & close up her apt., put her stuff in storage, and drive her car back here.)
We will meet with Dr. Sunkin Monday to get a copy of my chart to have with me in Florida & to discuss any symptom control measures he might suggest. He didn't argue our decision at all.
Having made the decision, I felt the most energetic I've felt in months on Monday, and I still feel good today, Tuesday. Tony & I have talked over the years about how difficult it is to get off the high-tech medical track once you get on it, whatever the disease. It feels good to recognize that this is the right time to step away from it. I certainly don't feel like I am giving up, by any means. I feel instead like I am taking control and it is very energizing. We may return to high tech medical treatment at some point in the future, for symptom control. I don't feel like we've slammed the door shut forever, but closed it gently for now.
Tuesday, December 22, 2009
Sunday, December 20, 2009
A Dilemma
It is Sunday afternoon, looking back on a busy, difficult week -- full of doctors & tests, not my favorite way to spend my time.
We saw Dr. Sunkin, our oncologist, Wednesday morning. It would have been before the fourth chemo, but with the PET scan report, that chemo is out of the question, simply not working. His nurse, who takes my blood pressure, weighs me, etc., took one look at the PET report and said, "Oh my god," and immediately came over and gave me a big hug and kiss. It was very sweet and reflective, I thought, that results like that are fairly rare.
Sunkin was very happy we were trying to get to the thoracic oncologists at Sloan Kettering for a second opinion. In fact, Tony had to push him to tell us what he would do next. He seemed to want to wait for the Sloan visit, but we wanted his take, too. His move: Alimta every three weeks (it's a 15-minute infusion, with fatigue as main side effect). He'd do two rounds and then scan to see if it is working. It works differently than the chemo I've already had, so whether it might be successful, who knows. In one study I read, it extended life 4 months in 30% of the patients, but it didn't say how many of those patients were failed first-line chemo like I am.
I pushed Sunkin for a prognosis, given the situation. He finally reluctantly said 3-6 months.
He also wanted another brain MRI, since that is a common place for lung cancer metastasis. So after getting out the door by 8:30 a.m. Wed. for the Sunkin appointment, I was out the door Thursday by 8 a.m. for the MRI. Bless Mara got up early to drive me, since Tony had two appointments he really couldn't cancel, having to do with final decisions about new health insurance.
I forgot that the MRI is a little difficult for someone who has a tendency to claustrophobia, and unlike the first one I had a couple of months ago, the tech didn't ask about that. So I had to hit the panic button 20 seconds in, come out of the machine, sit up, have some water, compose myself, and then go back in for the 20 minutes of testing. Once again I played golf in my head. I'm not sure how long I can hold onto those images....
Meanwhile, we still had no firm appointment at Sloan. They had promised to put us in a cancellation. So Tony called again and verbally stamped his feet, getting me to the top of the waiting list of about 10 patients. Several hours later they called back to say we could come the next day, Friday, at 8:15 a.m. They had already received all my scans, biopsy slides, chart, etc.
So we went into the city Thursday evening in time to have dinner with my mother, where we would stay. Ellie met us there for dinner, which was a real treat to see her. My mother, on the other hand, was not a real treat. She is 90, has some non-life-threatening health issues of her own (a Parkinson's like syndrome that makes walking difficult & can affect her balance), and I think she is very frightened to see her care-giver daughter die before she does. But her way of expressing it was to greet me with anger and hostility. Not exactly what I needed. So I tried to raise the real issues with her. Not sure I got through, though.
So then on to Sloan Friday morning, taken over by a great corporate car service that Ellie arranged for us. Interesting how different Sloan is than St. Peter's, much more upscale patients, NY Times all over the waiting room along with snacks & drinks. The thing that impressed me the most was their obvious understanding of cancer patients: the elevators all had two-seat benches, so I didn't have to lean against the wall, I could actually sit. Eleven floors in the out-patient building with each floor devoted to a different cancer.
In the end, though, the Sloan doctors had no magic in their tool box. They thought my case was unusual in its aggressiveness & lack of response to the chemo. But they too recommended Alimta on same schedule as Sunkin. They thought I could wait on the single brain lesion (you didn't really think the brain MRI would be clean, did you?)and it could be treated with a single stereostatic beam radiation at some point, if it became symptomatic. Down the road, I could have radiation for symptom control in the left lung. They were not at all concerned about the "little nodules" elsewhere.
They refused to give me a prognosis, saying there are just too many variables. They saw no reason to switch treatment to Sloan, that Sunkin would do exactly what they would. The doc said she uses Alimta "like water" there and that 10% of the patients respond, but again, that probably includes those who were successful on the first-line chemo.
So now we are faced with a dilemma: do we try the Alimta, even though the odds are so poor (Chris, my hospice case manager son, thinks the odds for me are probably around 1 or 2%) or do we call it quits, while I am still pretty symptom free and just focus on using the remaining time well. We are quite conflicted about it and so are polling all five kids to see what they think. So far we are 2 for Alimta (Ellie & Mara), 1 against (Chris, who feels these chemicals damage my own natural ability to fight the cancer, so there is a real downside beyond the side-effects).
Meanwhile, the one piece of good news we got last week was that the place right near the beach in Florida that I had booked for the month of Feb. last August, then cancelled when I was diagnosed, is still available. So we'll probably move ahead with that. But we are a little concerned about how far away Feb. feels, so we are also looking at two weeks in early Jan. for a quick hit of sun & warmth & sand -- all life-giving to this Leo.
I'll let you know what we decide. And I welcome your comments.
We saw Dr. Sunkin, our oncologist, Wednesday morning. It would have been before the fourth chemo, but with the PET scan report, that chemo is out of the question, simply not working. His nurse, who takes my blood pressure, weighs me, etc., took one look at the PET report and said, "Oh my god," and immediately came over and gave me a big hug and kiss. It was very sweet and reflective, I thought, that results like that are fairly rare.
Sunkin was very happy we were trying to get to the thoracic oncologists at Sloan Kettering for a second opinion. In fact, Tony had to push him to tell us what he would do next. He seemed to want to wait for the Sloan visit, but we wanted his take, too. His move: Alimta every three weeks (it's a 15-minute infusion, with fatigue as main side effect). He'd do two rounds and then scan to see if it is working. It works differently than the chemo I've already had, so whether it might be successful, who knows. In one study I read, it extended life 4 months in 30% of the patients, but it didn't say how many of those patients were failed first-line chemo like I am.
I pushed Sunkin for a prognosis, given the situation. He finally reluctantly said 3-6 months.
He also wanted another brain MRI, since that is a common place for lung cancer metastasis. So after getting out the door by 8:30 a.m. Wed. for the Sunkin appointment, I was out the door Thursday by 8 a.m. for the MRI. Bless Mara got up early to drive me, since Tony had two appointments he really couldn't cancel, having to do with final decisions about new health insurance.
I forgot that the MRI is a little difficult for someone who has a tendency to claustrophobia, and unlike the first one I had a couple of months ago, the tech didn't ask about that. So I had to hit the panic button 20 seconds in, come out of the machine, sit up, have some water, compose myself, and then go back in for the 20 minutes of testing. Once again I played golf in my head. I'm not sure how long I can hold onto those images....
Meanwhile, we still had no firm appointment at Sloan. They had promised to put us in a cancellation. So Tony called again and verbally stamped his feet, getting me to the top of the waiting list of about 10 patients. Several hours later they called back to say we could come the next day, Friday, at 8:15 a.m. They had already received all my scans, biopsy slides, chart, etc.
So we went into the city Thursday evening in time to have dinner with my mother, where we would stay. Ellie met us there for dinner, which was a real treat to see her. My mother, on the other hand, was not a real treat. She is 90, has some non-life-threatening health issues of her own (a Parkinson's like syndrome that makes walking difficult & can affect her balance), and I think she is very frightened to see her care-giver daughter die before she does. But her way of expressing it was to greet me with anger and hostility. Not exactly what I needed. So I tried to raise the real issues with her. Not sure I got through, though.
So then on to Sloan Friday morning, taken over by a great corporate car service that Ellie arranged for us. Interesting how different Sloan is than St. Peter's, much more upscale patients, NY Times all over the waiting room along with snacks & drinks. The thing that impressed me the most was their obvious understanding of cancer patients: the elevators all had two-seat benches, so I didn't have to lean against the wall, I could actually sit. Eleven floors in the out-patient building with each floor devoted to a different cancer.
In the end, though, the Sloan doctors had no magic in their tool box. They thought my case was unusual in its aggressiveness & lack of response to the chemo. But they too recommended Alimta on same schedule as Sunkin. They thought I could wait on the single brain lesion (you didn't really think the brain MRI would be clean, did you?)and it could be treated with a single stereostatic beam radiation at some point, if it became symptomatic. Down the road, I could have radiation for symptom control in the left lung. They were not at all concerned about the "little nodules" elsewhere.
They refused to give me a prognosis, saying there are just too many variables. They saw no reason to switch treatment to Sloan, that Sunkin would do exactly what they would. The doc said she uses Alimta "like water" there and that 10% of the patients respond, but again, that probably includes those who were successful on the first-line chemo.
So now we are faced with a dilemma: do we try the Alimta, even though the odds are so poor (Chris, my hospice case manager son, thinks the odds for me are probably around 1 or 2%) or do we call it quits, while I am still pretty symptom free and just focus on using the remaining time well. We are quite conflicted about it and so are polling all five kids to see what they think. So far we are 2 for Alimta (Ellie & Mara), 1 against (Chris, who feels these chemicals damage my own natural ability to fight the cancer, so there is a real downside beyond the side-effects).
Meanwhile, the one piece of good news we got last week was that the place right near the beach in Florida that I had booked for the month of Feb. last August, then cancelled when I was diagnosed, is still available. So we'll probably move ahead with that. But we are a little concerned about how far away Feb. feels, so we are also looking at two weeks in early Jan. for a quick hit of sun & warmth & sand -- all life-giving to this Leo.
I'll let you know what we decide. And I welcome your comments.
Saturday, December 12, 2009
TV Shows
We have stopped watching several TV shows that were once real favorites, because a main character has cancer. It is not exactly entertaining to watch someone grappling with the disease.
So, for instance, we used to like Grey's Anatomy, although the show had already gone down hill last season. It is so hard to sustain good writing, season after season. But this year, with Izzie's ongoing battle with cancer, it is just too much.
The same goes for Brothers & Sisters, another real favorite. I particularly like Sally Field, but when Kalista Flockhart's cancer returned at the beginning of this season, we clicked to another channel. I hope she recovers.
And then last night, I caught the second half of Law & Order, not a show we watch faithfully but one we'll watch occasionally. So I don't know when Lt. Van Beuren's cancer started, but must be a while ago, since she is back at work with a wig. So take that off our 'watch' list.
I am sure these shows' writers feel it adds to the realism to have a character with cancer, but I can't imagine it adds to the entertainment for the millions with cancer. Maybe I'm wrong. Maybe others with cancer appreciate being included. I certainly don't.
Interesting that those with cancer are all women on these shows. Is that because TV men are too strong to get cancer? Do we have sexist disease casting???
So, for instance, we used to like Grey's Anatomy, although the show had already gone down hill last season. It is so hard to sustain good writing, season after season. But this year, with Izzie's ongoing battle with cancer, it is just too much.
The same goes for Brothers & Sisters, another real favorite. I particularly like Sally Field, but when Kalista Flockhart's cancer returned at the beginning of this season, we clicked to another channel. I hope she recovers.
And then last night, I caught the second half of Law & Order, not a show we watch faithfully but one we'll watch occasionally. So I don't know when Lt. Van Beuren's cancer started, but must be a while ago, since she is back at work with a wig. So take that off our 'watch' list.
I am sure these shows' writers feel it adds to the realism to have a character with cancer, but I can't imagine it adds to the entertainment for the millions with cancer. Maybe I'm wrong. Maybe others with cancer appreciate being included. I certainly don't.
Interesting that those with cancer are all women on these shows. Is that because TV men are too strong to get cancer? Do we have sexist disease casting???
Friday, December 11, 2009
Bad News
The PET scan went fine. Only took 90 minutes total, and I didn't cough during the actual scan. They also said we'd have the results by the afternoon.
And sure enough, Dr. Sunkin's physician assistant called mid-afternoon. Her opener was, "This is not the news you want to hear." She was right in spades. She read me the pertinent info: the lung mass is the same size by measurement, although the report says it is larger (she's not sure why the discrepancy); there are "new little lung nodules"; and the adrenal mass has grown from 8.2 cm to 9.1 cm in two months.
Tony and Mara were home when the news came in. Really, all I could do for a few minutes after I hung up was cry. I am not one who cries easily, except at tear-jerker movies, but there was no avoiding this. And this morning, our Golden Retriever, who loves to come up on the bed after Tony gets up, was on the bed when I woke up. He knows I don't like to pet him first thing, but he saw/felt my sadness this morning and slowly, very slowly, inched his way toward me till his paw was under my hand. There was nothing to do but pet him. I even let him lick my hand, also something I don't routinely do. Dogs really are wonderfully sensitive animals.
So clearly, the chemo is not working. I have an appointment with Sunkin Wednesday, so we will get what he thinks the next step(s) should be. Then, we can compare that with what the Sloan Kettering thoracic oncologist suggests.
We were all set with Sloan -- early 12/24 -- but at the end of the day yesterday, they called
to say the doctor cancelled all appointments that day & the first available appointment is 1/7. (Nothing went well yesterday.) But Sloan already had the new PET scan & saw the urgency so they hope to slide us in a cancellation appointment. I arranged this morning to have the biopsy slides & all the scans Fed Ex'd down to Sloan by Monday, so they have them ahead of when we come in. I believe Dr. Sunkin's office has also already sent the chart down. They have really bent over backwards to be helpful.
But I must say, I don't hold out much hope for Sloan to have a good treatment option. It's not like there are a lot of drug choices. We'll see.
Meanwhile, I am very happy to have some extra time off between chemos, to recover more fully. And perhaps there will be no more chemo.
Tony and I are beginning to figure out what we'd like to do, while I still feel up to it. One of our first thoughts is a long weekend in Montreal. We were there years ago, loved it, but somehow never made it back. We could even take the train, so bad weather wouldn't affect us (unless it is really bad. Then Amtrak doesn't run either.) And I am still hoping to get to warmth, sun & sand this winter.
Meantime, I went to my personal trainer today. First time since before the last chemo, and it felt great and I was able to hang in there for most of the hour. Lord knows I need it. I feel like I've already lost all muscle mass.
And sure enough, Dr. Sunkin's physician assistant called mid-afternoon. Her opener was, "This is not the news you want to hear." She was right in spades. She read me the pertinent info: the lung mass is the same size by measurement, although the report says it is larger (she's not sure why the discrepancy); there are "new little lung nodules"; and the adrenal mass has grown from 8.2 cm to 9.1 cm in two months.
Tony and Mara were home when the news came in. Really, all I could do for a few minutes after I hung up was cry. I am not one who cries easily, except at tear-jerker movies, but there was no avoiding this. And this morning, our Golden Retriever, who loves to come up on the bed after Tony gets up, was on the bed when I woke up. He knows I don't like to pet him first thing, but he saw/felt my sadness this morning and slowly, very slowly, inched his way toward me till his paw was under my hand. There was nothing to do but pet him. I even let him lick my hand, also something I don't routinely do. Dogs really are wonderfully sensitive animals.
So clearly, the chemo is not working. I have an appointment with Sunkin Wednesday, so we will get what he thinks the next step(s) should be. Then, we can compare that with what the Sloan Kettering thoracic oncologist suggests.
We were all set with Sloan -- early 12/24 -- but at the end of the day yesterday, they called
to say the doctor cancelled all appointments that day & the first available appointment is 1/7. (Nothing went well yesterday.) But Sloan already had the new PET scan & saw the urgency so they hope to slide us in a cancellation appointment. I arranged this morning to have the biopsy slides & all the scans Fed Ex'd down to Sloan by Monday, so they have them ahead of when we come in. I believe Dr. Sunkin's office has also already sent the chart down. They have really bent over backwards to be helpful.
But I must say, I don't hold out much hope for Sloan to have a good treatment option. It's not like there are a lot of drug choices. We'll see.
Meanwhile, I am very happy to have some extra time off between chemos, to recover more fully. And perhaps there will be no more chemo.
Tony and I are beginning to figure out what we'd like to do, while I still feel up to it. One of our first thoughts is a long weekend in Montreal. We were there years ago, loved it, but somehow never made it back. We could even take the train, so bad weather wouldn't affect us (unless it is really bad. Then Amtrak doesn't run either.) And I am still hoping to get to warmth, sun & sand this winter.
Meantime, I went to my personal trainer today. First time since before the last chemo, and it felt great and I was able to hang in there for most of the hour. Lord knows I need it. I feel like I've already lost all muscle mass.
Wednesday, December 9, 2009
Nightmare Resolved
I got the opinion of two other oncologists when I didn't hear back from Dr. Sunkin about delaying Chemo #4. Seems it is not a problem, that the 21-day chemo cycle has less to do with the effectiveness of the drugs at that interval than the fact the body needs three weeks to recover sufficiently to take another hit. Then, this morning, Sunkin called from San Antonio and also said right away it is no problem to delay treatment. They all said in the long run, the delay will not affect the outcome.
So at this point I'm thinking if there is a Chemo #4 in the offing, maybe it just gets postponed all the way till after New Year's weekend, so I can enjoy our family Xmas slated for that weekend.
In the meantime, I am still so tired two weeks after the last chemo that I relish the thought of having a longer recovery period. I am still spending more of the day on the bed than off.
After several more calls, it also looks like insurance after the first of the year will not be an issue, that all Tony's hard work researching options will cover Sloan or St. Peter's.
Now, we have to collect the massive amount of info Sloan K. wants for the visit: 7 actual biopsy slides as well as the report, all the PET, CT & MRI reports as well as a copy of the actual scans. Of course, most of Sunkin's chart on the treatments, medications, etc., etc. About the only thing they don't want is the early blood work. They only want recently labs.
So tomorrow we go off for the PET scan, leaving at 7:30 a.m. so I can sit in an over-heated lead-lined room for 100 minutes while the radioactive material they inject courses through my body (I don't feel it). The scan only takes about 20 minutes. Then, we'll try to start arranging to have the info sent to Sloan.
In the meantime, I hope to get the PET results on Friday & I will keep my 12/16 appt. with Dr. Sunkin to hear what he plans, once he sees the PET results. That way, when we go to Sloan to see thoracic oncologist Dr. Naiyer Rizvi, we can compare apples to apples.
Fingers crossed that the irritating little post-nasal drip cough I seem to have these days (nothing to do with the cancer) doesn't disrupt lying still for tomorrow's scan. Seems like it's always something
So at this point I'm thinking if there is a Chemo #4 in the offing, maybe it just gets postponed all the way till after New Year's weekend, so I can enjoy our family Xmas slated for that weekend.
In the meantime, I am still so tired two weeks after the last chemo that I relish the thought of having a longer recovery period. I am still spending more of the day on the bed than off.
After several more calls, it also looks like insurance after the first of the year will not be an issue, that all Tony's hard work researching options will cover Sloan or St. Peter's.
Now, we have to collect the massive amount of info Sloan K. wants for the visit: 7 actual biopsy slides as well as the report, all the PET, CT & MRI reports as well as a copy of the actual scans. Of course, most of Sunkin's chart on the treatments, medications, etc., etc. About the only thing they don't want is the early blood work. They only want recently labs.
So tomorrow we go off for the PET scan, leaving at 7:30 a.m. so I can sit in an over-heated lead-lined room for 100 minutes while the radioactive material they inject courses through my body (I don't feel it). The scan only takes about 20 minutes. Then, we'll try to start arranging to have the info sent to Sloan.
In the meantime, I hope to get the PET results on Friday & I will keep my 12/16 appt. with Dr. Sunkin to hear what he plans, once he sees the PET results. That way, when we go to Sloan to see thoracic oncologist Dr. Naiyer Rizvi, we can compare apples to apples.
Fingers crossed that the irritating little post-nasal drip cough I seem to have these days (nothing to do with the cancer) doesn't disrupt lying still for tomorrow's scan. Seems like it's always something
Tuesday, December 8, 2009
Nightmarish
Tony spent a good part of the morning on the phone with Sloan Kettering's very nice, very helpful physician's referral service. We have an appointment with one of their thoracic oncologists for 12/24 at 8:15 a.m. That's the easy part.
The rest is a nightmare. First of all, Sloan insists on seeing me after the PET scan (slated for this Thursday) but BEFORE any further treatment. Well, my next chemo is schedule for 12/16. I don't exactly like the idea of just blowing it off. So I have a call in to Dr. Sunkin in hopes of hearing from him today as he has a layover somewhere on his way to San Antonio for a week's conference. I want his opinion about postponing Chemo #4 by almost two weeks. We supposedly have only 24 hours to get back to Sloan to confirm the appointment, so the clock is ticking.
Then, there are insurance issues. We'll need our primary care doc to sweet-talk our current insurer into covering the Sloan visit. Hopefully, he'll be as successful as Sunkin just was getting the PET scan covered.
The biggest nightmare then has to do with future insurance coverage. Tony had worked it all out, we thought, to switch the first of the year, in part to ensure we could go to a place like Sloan if we wanted. But it turns out that what he had planned for new coverage does not work for Sloan, according to their billing dept. With only weeks left to go, he has to go back to the drawing board. Since this is not theoretical but real-life issues of coverage, the pressure is enormous to be sure we make the right decisions.
And then there's the whole question of what this possibly changed chemo schedule does to our family Christmas celebration, planned for New Year's weekend when, presumably, I would be recovered from the Dec. 16th chemo. Hamilton & Annette just booked their plane tickets for New Year's weekend. Guess we'll just have to leave plans as they are. I just hope I get to enjoy everyone.
Maybe if I felt tip-top, it wouldn't all seem so daunting to work out. We will obviously chip away at one issue at a time. For now, I am waiting for the phone to ring from Sunkin, or his office. Fingers crossed it rings. That's Step #1, to get his take on putting the chemo off.
The rest is a nightmare. First of all, Sloan insists on seeing me after the PET scan (slated for this Thursday) but BEFORE any further treatment. Well, my next chemo is schedule for 12/16. I don't exactly like the idea of just blowing it off. So I have a call in to Dr. Sunkin in hopes of hearing from him today as he has a layover somewhere on his way to San Antonio for a week's conference. I want his opinion about postponing Chemo #4 by almost two weeks. We supposedly have only 24 hours to get back to Sloan to confirm the appointment, so the clock is ticking.
Then, there are insurance issues. We'll need our primary care doc to sweet-talk our current insurer into covering the Sloan visit. Hopefully, he'll be as successful as Sunkin just was getting the PET scan covered.
The biggest nightmare then has to do with future insurance coverage. Tony had worked it all out, we thought, to switch the first of the year, in part to ensure we could go to a place like Sloan if we wanted. But it turns out that what he had planned for new coverage does not work for Sloan, according to their billing dept. With only weeks left to go, he has to go back to the drawing board. Since this is not theoretical but real-life issues of coverage, the pressure is enormous to be sure we make the right decisions.
And then there's the whole question of what this possibly changed chemo schedule does to our family Christmas celebration, planned for New Year's weekend when, presumably, I would be recovered from the Dec. 16th chemo. Hamilton & Annette just booked their plane tickets for New Year's weekend. Guess we'll just have to leave plans as they are. I just hope I get to enjoy everyone.
Maybe if I felt tip-top, it wouldn't all seem so daunting to work out. We will obviously chip away at one issue at a time. For now, I am waiting for the phone to ring from Sunkin, or his office. Fingers crossed it rings. That's Step #1, to get his take on putting the chemo off.
Friday, December 4, 2009
Lung Cancer Factoids
In searching for a thoracic oncologist, Tony came upon some interesting info on lung cancer:
• More people die of lung cancer worldwide than any other cancer
• Three times more men die of lung cancer than prostate cancer
• Two times as many women die of lung cancer than breast cancer (and yet I think about all the publicity breast cancer gets, compared to lung cancer)
• People with lung cancer who have never smoked are three times more likely to be female than male
• It is a modern epidemic among women in part because women get lung cancer after smoking fewer cigarettes for fewer years than men (I read somewhere that estrogen may be the culprit, but they don't really know yet)
The specialist said lung cancer now “ends the life of vital, active, healthy people.” Sound familiar?
• More people die of lung cancer worldwide than any other cancer
• Three times more men die of lung cancer than prostate cancer
• Two times as many women die of lung cancer than breast cancer (and yet I think about all the publicity breast cancer gets, compared to lung cancer)
• People with lung cancer who have never smoked are three times more likely to be female than male
• It is a modern epidemic among women in part because women get lung cancer after smoking fewer cigarettes for fewer years than men (I read somewhere that estrogen may be the culprit, but they don't really know yet)
The specialist said lung cancer now “ends the life of vital, active, healthy people.” Sound familiar?
Art, Not Science
We went for the usual Day 8 doctor visit Wednesday. The labs were all fine. The impressions we came away with were not. We discussed with Dr. Sunkin various next steps.
The first is a PET scan, if the insurance co. will approve it, or a CT scan next week to see what is happening with the tumors. Are they shrinking? Do they still show metabolic activity (only a PET shows that) or are they dead tissue now? Tony & I were quite shocked to infer that Sunkin is also looking at the scan to see if there are any new tumors. Somehow, we assumed that at least while I am getting chemo, no new tumors would appear.
We were also quite disappointed to learn the CEA tumor marker test that had dropped so dramatically during the first two chemos is really not very reliable. Sunkin compared it to the PSA test for prostate cancer. When Tony had prostate cancer several years ago, his PSA was not used to diagnose it. It always stayed low. Sunkin said some cancer patients have a CEA in the thousands, so my little 7.4 suddenly seems pretty meaningless. I am sure it is still a good sign that it has dropped during the chemo, but it seems it is not the strong predictor we thought it was.
He pointed to the fact that I don't have back pain as a good sign, but I reminded him that the pain stopped before chemo even started. No one has ever been able to explain why I had so much pain in Sept. and have virtually none now. It is still a mystery.
In discussing what the scan might show, Sunkin also never used the ‘r’ word – remission. He came close, describing shrinking tumors. But he never actually said remission.
We also briefly discussed Alimta as a maintenance drug after the chemo. When I expressed my disappointment that a study shows it extends life 4.3 months, that I was looking for years, not months, he didn’t really respond.
And how many more chemo treatments is still somewhat up in the air till the scan next week. Sunkin is talking about just one more – which makes it four treatments total. When I asked why we wouldn’t keep going till the CEA was zero and the tumors totally shrunk, he said there is a declining benefit in the chemo, that it starts to have too many side effects. Tony asked if we could return to the chemo at a later date if needed, and Sunkin said we could.
So we came away determined to go find a second opinion – after the scan and the fourth chemo. We are now in the midst of researching thoracic oncologists & programs – at Sloan Kettering and other major cancer centers in the Northeast. Sunkin said he was quite willing to send the chart & scans off for another set of eyes, but when I asked for guidance in choosing a doctor, he put us off till after the scan next week. Then, after a lengthy discussion about how we would come in to get the all-important scan results and discuss what next, he realized he will be away for a week at a conference. So his P.A. or nurse will call with the results, and we’ll move ahead on our own finding someone to see. We will see Sunkin just ahead of Chemo #4, so we can discuss his take on what’s next.
The first is a PET scan, if the insurance co. will approve it, or a CT scan next week to see what is happening with the tumors. Are they shrinking? Do they still show metabolic activity (only a PET shows that) or are they dead tissue now? Tony & I were quite shocked to infer that Sunkin is also looking at the scan to see if there are any new tumors. Somehow, we assumed that at least while I am getting chemo, no new tumors would appear.
We were also quite disappointed to learn the CEA tumor marker test that had dropped so dramatically during the first two chemos is really not very reliable. Sunkin compared it to the PSA test for prostate cancer. When Tony had prostate cancer several years ago, his PSA was not used to diagnose it. It always stayed low. Sunkin said some cancer patients have a CEA in the thousands, so my little 7.4 suddenly seems pretty meaningless. I am sure it is still a good sign that it has dropped during the chemo, but it seems it is not the strong predictor we thought it was.
He pointed to the fact that I don't have back pain as a good sign, but I reminded him that the pain stopped before chemo even started. No one has ever been able to explain why I had so much pain in Sept. and have virtually none now. It is still a mystery.
In discussing what the scan might show, Sunkin also never used the ‘r’ word – remission. He came close, describing shrinking tumors. But he never actually said remission.
We also briefly discussed Alimta as a maintenance drug after the chemo. When I expressed my disappointment that a study shows it extends life 4.3 months, that I was looking for years, not months, he didn’t really respond.
And how many more chemo treatments is still somewhat up in the air till the scan next week. Sunkin is talking about just one more – which makes it four treatments total. When I asked why we wouldn’t keep going till the CEA was zero and the tumors totally shrunk, he said there is a declining benefit in the chemo, that it starts to have too many side effects. Tony asked if we could return to the chemo at a later date if needed, and Sunkin said we could.
So we came away determined to go find a second opinion – after the scan and the fourth chemo. We are now in the midst of researching thoracic oncologists & programs – at Sloan Kettering and other major cancer centers in the Northeast. Sunkin said he was quite willing to send the chart & scans off for another set of eyes, but when I asked for guidance in choosing a doctor, he put us off till after the scan next week. Then, after a lengthy discussion about how we would come in to get the all-important scan results and discuss what next, he realized he will be away for a week at a conference. So his P.A. or nurse will call with the results, and we’ll move ahead on our own finding someone to see. We will see Sunkin just ahead of Chemo #4, so we can discuss his take on what’s next.
Wednesday, November 25, 2009
Chemo #3
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.
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.
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.
Wednesday, October 28, 2009
Getting Home
The next morning, Sunday, we all had a great big family breakfast, courtesy of Chris, who seemed to be the designated cook, despite having several other very accomplished cooks in the family. We all talked some about the cancer and I shared my idea of doing a blog about it. Once a journalist, always a journalist, I guess. Jayson set the blog up for me, since he is an experienced blogger (www.crestedbutteguides.com). Originally, I thought I'd write it in every day. That obviously hasn't happened, as I am still playing catch-up a month later. I realize that it is more like a diary for me, than the usual blog. Put it down to my age, I guess.
In talking about the cancer, Chris made an impassioned plea for alternative therapies, perhaps in Mexico, arguing that the aggressive high-tech American way of treating cancer isn't always the most effective. But I think it was too much, too soon, for some of his siblings, who were upset to hear his lack of faith in American medicine, particularly from someone who works in the field.
Later in the day, after Mara, Rob & Els headed for the airport, Jay and I drove out to the ranch to collect some things left behind. It was wonderful to have the time alone with Jayson. His imagery from his mountain climbing experience was particularly helpful -- not looking at the whole mountain, but just taking it one pitch at a time. I instinctively was already doing that, but it was great to have it spelled out. Jay's fierce determination to get to the summit is inspiring. He has also been extremely helpful to his siblings through all this, not the usual role for Jayson, who in the past had only tenuous connections with his brothers and sisters, feeling they led lives very different from his. Now, his inner strength is a source of comfort to all in the family.
Early Monday morning, Tony & I packed up the car and headed to the Memphis Airport to drop Jay for his flight, and then for our long drive home. We pushed hard Monday, since I was feeling okay, and got to around Hagerstown. This time, Tony did all the driving. Normally, we trade off at every tankful, since we both like to drive, but I wasn't up to it, and I think Tony welcomed the distraction. The drive home didn't have the joy waiting at the end of the trip that the drive down did. Only tests and treatment now awaited.
I was surprised that I wasn't at all nervous about any of the impending tests. While I have a horror of surgery (being cracked open, intubation), that was not in the cards, so the tests -- needle biopsy and all -- didn't worry me a bit. They seemed easy, and in fact, they did go very smoothly. But I am getting ahead of myself.
Day 2 of the trip home, Tuesday, did not go so well. I was in a lot of discomfort. Tony had bought a pillow and foam to create a bed across the back seat and that's where I spent most of Tuesday's ride, popping pain pills that didn't really work. By the time we got home in early afternoon, I was pretty miserable. We called the local rescue squad, because I just couldn't face getting back in the car for the hour's drive to St. Peter's Hospital, and I hoped the squad EMT could give me something for the pain. He couldn't, but I was still more comfortable in the rig than in the car. So back to the hospital I went, for the second Tuesday in a row. It was hard to imagine it was only one week earlier that we had got the stunningly shocking diagnosis.
This time we had to go to the ER at St. Peter's, but the treatment was fine. They gave me something for the pain almost immediately, then something for the nausea caused by the pain med. Chris & Gwen came up after work, so there we all were again -- in a hospital ER.
By evening I was transferred to a room, a private room, courtesy of Chris's boss, who also works at St. Peter's. What a luxury.
The next day Tony worked the phone to the oncologist's office, arranging all the tests we had put off. By Thursday afternoon, I had had the needle biopsy of the lung (very easy, done with a local anesthetic) and the brain MRI, and we were on our way home again, pain free.
The following Monday we met with the oncologist to get the biopsy results. We already had the brain MRI results -- clean, no metastasis. Whew! I had worried about that one, knowing how brain tumors can dramatically alter the personality. I at least want to stay me throughout this.
Unfortunately, when we saw Dr. Sunkin Monday, he didn't have the biopsy results, so he talked about the treatment based on his assumption of what the results would show. In fact, it ended up only slightly differently: non-small cell large cell carcinoma, the least common of the several lung cancers. The treatment he laid out is an every-three-week chemo of carboplatinum and Taxotere. Normally, he'd add Avastin but can't in my case because of the risk of the adrenal tumor bleeding. He also gives several heavy duty anti-nausea drugs before, during and immediately after chemo as well as a shot of Neulasta the day after chemo, to boost the immune system. So the drill is blood work the day before, chemo on Day 1 (takes about 2 1/2 to 3 hours), return on Day 2 for IV fluids and Neulasta (takes about 2 hours), blood work on Day 7, return on Day 8 to see the P.A. and go over the blood work and how I am doing. Repeat every three weeks.
Sunkin said we would do that for three treatments, then do another CT scan to see if the tumors are responding. If they are, then I'll get three or, at most, four more treatments. It is not open-ended. We didn't discuss what the options are if the treatment isn't working. I just assume it will work.
The one upsetting part of the visit with Sunkin was when I asked about the prognosis. He never talked about a 'cure', only (temporary) remission. He was very straightforward, which I appreciated, and just answered the questions asked. Prognosis, he said, is 10 to 18 months.
So now I work hard to put that information aside, to remind myself it is only a statistic and I am not a statistic. The fact that I am otherwise perfectly healthy (not on any meds for anything) should help recovery pretty dramatically, I am hoping.
I also asked him about work, since I work half-time as executive director of Columbia County Bounty, which links local farmers with local chefs as well as consumers who are committed to eating locally grown foods. I had volunteered with the organization for several years and then was hired as the first paid exec. The work was important to me, but in the new scheme of things, I was re-evaluating my priorities. Sunkin suggested I might be best off stepping down, since I'd have limited energy. I had already alerted my board to the news of my diagnosis, so they could begin thinking about what to do also.
Later in the week I went back to St. Peter's outpatient and had a port put in my chest, for the chemo. It too was a very simple procedure, and again, I wasn't nervous, although I am a little freaked by this bumpy thing now on my chest. (I'll never wear again the dress I wore to the wedding, not with this ugly port bump.) I also had a PET scan, which was clean -- no tumors anywhere else -- just the two we already knew about.
Whether it was all the tests, or just the enormity of it all, it knocked me out. I spent most of the week before the chemo hanging out on my bed -- reading, listening to NPR news shows, resting. I wasn't in pain, didn't take any pain meds. A heating pad on my back works very nicely to dissipate any discomfort.
We had to fend off loads of offers of food. As it was, one friend brought her delicious pot roast, carrots & potatoes over. Another brought over veggie lasagna for Tony, a dessert and delicious jam, while a third friend left on the doorstep chicken soup and a thick, thick corn chowder as well as two kinds of cookies and an apple crisp, trying to fatten me up. Our freezer is still full, weeks later.
In talking about the cancer, Chris made an impassioned plea for alternative therapies, perhaps in Mexico, arguing that the aggressive high-tech American way of treating cancer isn't always the most effective. But I think it was too much, too soon, for some of his siblings, who were upset to hear his lack of faith in American medicine, particularly from someone who works in the field.
Later in the day, after Mara, Rob & Els headed for the airport, Jay and I drove out to the ranch to collect some things left behind. It was wonderful to have the time alone with Jayson. His imagery from his mountain climbing experience was particularly helpful -- not looking at the whole mountain, but just taking it one pitch at a time. I instinctively was already doing that, but it was great to have it spelled out. Jay's fierce determination to get to the summit is inspiring. He has also been extremely helpful to his siblings through all this, not the usual role for Jayson, who in the past had only tenuous connections with his brothers and sisters, feeling they led lives very different from his. Now, his inner strength is a source of comfort to all in the family.
Early Monday morning, Tony & I packed up the car and headed to the Memphis Airport to drop Jay for his flight, and then for our long drive home. We pushed hard Monday, since I was feeling okay, and got to around Hagerstown. This time, Tony did all the driving. Normally, we trade off at every tankful, since we both like to drive, but I wasn't up to it, and I think Tony welcomed the distraction. The drive home didn't have the joy waiting at the end of the trip that the drive down did. Only tests and treatment now awaited.
I was surprised that I wasn't at all nervous about any of the impending tests. While I have a horror of surgery (being cracked open, intubation), that was not in the cards, so the tests -- needle biopsy and all -- didn't worry me a bit. They seemed easy, and in fact, they did go very smoothly. But I am getting ahead of myself.
Day 2 of the trip home, Tuesday, did not go so well. I was in a lot of discomfort. Tony had bought a pillow and foam to create a bed across the back seat and that's where I spent most of Tuesday's ride, popping pain pills that didn't really work. By the time we got home in early afternoon, I was pretty miserable. We called the local rescue squad, because I just couldn't face getting back in the car for the hour's drive to St. Peter's Hospital, and I hoped the squad EMT could give me something for the pain. He couldn't, but I was still more comfortable in the rig than in the car. So back to the hospital I went, for the second Tuesday in a row. It was hard to imagine it was only one week earlier that we had got the stunningly shocking diagnosis.
This time we had to go to the ER at St. Peter's, but the treatment was fine. They gave me something for the pain almost immediately, then something for the nausea caused by the pain med. Chris & Gwen came up after work, so there we all were again -- in a hospital ER.
By evening I was transferred to a room, a private room, courtesy of Chris's boss, who also works at St. Peter's. What a luxury.
The next day Tony worked the phone to the oncologist's office, arranging all the tests we had put off. By Thursday afternoon, I had had the needle biopsy of the lung (very easy, done with a local anesthetic) and the brain MRI, and we were on our way home again, pain free.
The following Monday we met with the oncologist to get the biopsy results. We already had the brain MRI results -- clean, no metastasis. Whew! I had worried about that one, knowing how brain tumors can dramatically alter the personality. I at least want to stay me throughout this.
Unfortunately, when we saw Dr. Sunkin Monday, he didn't have the biopsy results, so he talked about the treatment based on his assumption of what the results would show. In fact, it ended up only slightly differently: non-small cell large cell carcinoma, the least common of the several lung cancers. The treatment he laid out is an every-three-week chemo of carboplatinum and Taxotere. Normally, he'd add Avastin but can't in my case because of the risk of the adrenal tumor bleeding. He also gives several heavy duty anti-nausea drugs before, during and immediately after chemo as well as a shot of Neulasta the day after chemo, to boost the immune system. So the drill is blood work the day before, chemo on Day 1 (takes about 2 1/2 to 3 hours), return on Day 2 for IV fluids and Neulasta (takes about 2 hours), blood work on Day 7, return on Day 8 to see the P.A. and go over the blood work and how I am doing. Repeat every three weeks.
Sunkin said we would do that for three treatments, then do another CT scan to see if the tumors are responding. If they are, then I'll get three or, at most, four more treatments. It is not open-ended. We didn't discuss what the options are if the treatment isn't working. I just assume it will work.
The one upsetting part of the visit with Sunkin was when I asked about the prognosis. He never talked about a 'cure', only (temporary) remission. He was very straightforward, which I appreciated, and just answered the questions asked. Prognosis, he said, is 10 to 18 months.
So now I work hard to put that information aside, to remind myself it is only a statistic and I am not a statistic. The fact that I am otherwise perfectly healthy (not on any meds for anything) should help recovery pretty dramatically, I am hoping.
I also asked him about work, since I work half-time as executive director of Columbia County Bounty, which links local farmers with local chefs as well as consumers who are committed to eating locally grown foods. I had volunteered with the organization for several years and then was hired as the first paid exec. The work was important to me, but in the new scheme of things, I was re-evaluating my priorities. Sunkin suggested I might be best off stepping down, since I'd have limited energy. I had already alerted my board to the news of my diagnosis, so they could begin thinking about what to do also.
Later in the week I went back to St. Peter's outpatient and had a port put in my chest, for the chemo. It too was a very simple procedure, and again, I wasn't nervous, although I am a little freaked by this bumpy thing now on my chest. (I'll never wear again the dress I wore to the wedding, not with this ugly port bump.) I also had a PET scan, which was clean -- no tumors anywhere else -- just the two we already knew about.
Whether it was all the tests, or just the enormity of it all, it knocked me out. I spent most of the week before the chemo hanging out on my bed -- reading, listening to NPR news shows, resting. I wasn't in pain, didn't take any pain meds. A heating pad on my back works very nicely to dissipate any discomfort.
We had to fend off loads of offers of food. As it was, one friend brought her delicious pot roast, carrots & potatoes over. Another brought over veggie lasagna for Tony, a dessert and delicious jam, while a third friend left on the doorstep chicken soup and a thick, thick corn chowder as well as two kinds of cookies and an apple crisp, trying to fatten me up. Our freezer is still full, weeks later.
Saturday, October 24, 2009
On the Road to Mississippi
The car trip Thursday afternoon/evening was a real present. It gave us the space to talk, to begin to get our arms around how totally changed our world had suddenly become. I think both Tony & I had always assumed I would outlive him. He had the "comfort" of knowing he would go first. After all, my mother at 90 still lives on her own. Her mother simply died of old age in her own bed at 95. No one in my family had ever had cancer. I expected another 25 to 30 years. Based on statistics, I had assumed I would be a widow someday, although we always talked about going out like Bucky Fuller & his wife, who died within days of one another in their 80s, even though one was apparently healthy. Now all that was out the window.
We talked about how to use the time, if it was going to be limited. We talked about some of the day trips we'd like to take close to home, that we somehow never get to do. Did it make sense to shed all our outside commitments? Were they just a needless distraction now?
I cried a little, at the thought of not getting to Mara's wedding some day, not getting to see the grandchildren Hamilton & Annette will produce, not being around to see Jayson finally settle down having finally found the love of his life. Tony came as close to crying as I'd ever seen.
We didn't go far Thursday, feeling we didn't want to push it. We pulled off the road in Hagerstown, MD, for dinner and the night. We expected to drive for most of Friday and then spend the night within 4 hours of Oxford, MS, so we could be there by noon Saturday. The wedding was at 5:00.
We spent part of the afternoon writing a message for Ellie to deliver on our behalf when speeches were given at Friday's rehearsal dinner. It was our usual Mom/Dad. We each wrote something, then melded the two together. I got teary at various points as we wrote. It took Tony 30 minutes (I timed him) to type it out on his I-Phone to send to Ellie in time for Rob to print it out before he left work that night at The Wall Street Journal, since they don't have a working printer at home. He got it in time, then inadvertently they left it on their dining table when they headed to the airport, so Els ended up reading it off her Berry.
Friday's drive through Virginia was rainy. By afternoon, I asked to drive, not telling Tony that the pain was beginning to come back. I thought driving would take my mind it off, that it might go away if I was focused on something else. But after two hours, I turned the wheel back to him and confessed. I had Oxycodone, which I started to take, even though I dislike taking pills. And Tony wanted to know what our emergency care options might be. We decided it probably make sense to keep going, to get as close to Memphis as we could.
I feared that Tennessee was one big medical wasteland, full of community hospitals like Hudson, not equipped to deal with a serious emergency. I pulled out the road atlas we carry, since we are inveterate road trippers, and picked out major medical centers along our route -- in Knoxville, Nashville and Memphis. Tony remembered that Apple's Steve Jobs had had a liver transplant in Memphis, so I googled Jobs on my little Berry and found which Memphis hospital he had gone to. Then I matched it with a nearby motel, so we just kept driving, a little nervous.
Tony said that no matter what happened, he was glad we were making the trip, that no matter how it turned out, we had made the right decision. I felt the same way. It was way too important not to try our all to get to the wedding, and to see all five kids.
At one point in late afternoon, the cell phone rang and it was my primary care doc, the one who had said go the ER when we had called at 6:30 a.m. It was our first conversation with him. He had seen the Hudson hospital medical records, so he knew what was up. But he was quite reassuring, in terms of taking the pain meds and just keep going. It was comforting to have a medical person second what we were doing.
I was able to sleep fairly well Friday night and we got on the road early, arriving at the house in Oxford around 9:30 a.m. There was Jayson, barefoot, coffee in hand, on the porch to greet us. All the bad just melted away, in the warmth and love of the children. (You have to understand that the 'children' are Mara, age 27, Hamilton 30, Jay 34, Chris 41, his lady Gwen 34, Ellie 46 and her husband, Rob, 46.) They had all been pretty devastated by the news and we had been talking to them several times a day, and they to each other. They had all arrived in time for the rehearsal dinner Friday night, so they were quite settled in. All but Rob & Els had actually come in Thursday, and had also gone out to the bride's parents (Bill & Annie Hollowell) for dinner that night, too.
Happily, I wasn't in any pain anymore. Amazing how it just dissipated overnight.
We spent the morning hanging out, until it was time to get dressed and go to the Hollowell's Foxfire Ranch where the wedding was to take place. We had to get there by 3 for lots and lots of photos. First they took the groom's family, in a variety of configurations and poses. Ham had spent the night at our house, holding to the tradition of not seeing the bride until the wedding.
Then, when it was Annette's turn with her family, we all went downstairs to wait. At one point. the reverend gathered us all together and said a special prayer for me, for Sister Vicki. I was very moved.
Finally, we all climbed to a van and went to the pavilion for the ceremony and reception. Since it had rained there for the previous 17 days, a wedding on the front lawn was out of the question. But the pavilion worked just fine, and it wasn't raining. I took a pain pill as a 'just in case,' not because I needed it.
It was thrilling to walk down the aisle with Tony to our seats. Jayson and Chris looked fabulous in the groomsman's tuxes, Mara looked gorgeous in her eggplant purple bridesmaid dress (each had a different vibrant color). Ellie looked incredibly elegant (I always see her in casual clothes, never dressed up) in a simple black dress, prepared to read from Kahlil Gibran's The Prophet on marriage, as part of the ceremony Ham and Annette had put together.
The ceremony was fabulous. The music was great -- including the church choir. Annette looked glorious in her floor-length white dress, Ham looked stunning in his cream colored tux. They glowed.
Afterwards, strangers kept coming up to me, some with tears in their eyes. to say how glad they were we had made it to the wedding. They all said they were praying for me. It felt like everyone there, all 250-plus people, knew about the diagnosis and how close we had come to missing this momentous event.
We talked about how to use the time, if it was going to be limited. We talked about some of the day trips we'd like to take close to home, that we somehow never get to do. Did it make sense to shed all our outside commitments? Were they just a needless distraction now?
I cried a little, at the thought of not getting to Mara's wedding some day, not getting to see the grandchildren Hamilton & Annette will produce, not being around to see Jayson finally settle down having finally found the love of his life. Tony came as close to crying as I'd ever seen.
We didn't go far Thursday, feeling we didn't want to push it. We pulled off the road in Hagerstown, MD, for dinner and the night. We expected to drive for most of Friday and then spend the night within 4 hours of Oxford, MS, so we could be there by noon Saturday. The wedding was at 5:00.
We spent part of the afternoon writing a message for Ellie to deliver on our behalf when speeches were given at Friday's rehearsal dinner. It was our usual Mom/Dad. We each wrote something, then melded the two together. I got teary at various points as we wrote. It took Tony 30 minutes (I timed him) to type it out on his I-Phone to send to Ellie in time for Rob to print it out before he left work that night at The Wall Street Journal, since they don't have a working printer at home. He got it in time, then inadvertently they left it on their dining table when they headed to the airport, so Els ended up reading it off her Berry.
Friday's drive through Virginia was rainy. By afternoon, I asked to drive, not telling Tony that the pain was beginning to come back. I thought driving would take my mind it off, that it might go away if I was focused on something else. But after two hours, I turned the wheel back to him and confessed. I had Oxycodone, which I started to take, even though I dislike taking pills. And Tony wanted to know what our emergency care options might be. We decided it probably make sense to keep going, to get as close to Memphis as we could.
I feared that Tennessee was one big medical wasteland, full of community hospitals like Hudson, not equipped to deal with a serious emergency. I pulled out the road atlas we carry, since we are inveterate road trippers, and picked out major medical centers along our route -- in Knoxville, Nashville and Memphis. Tony remembered that Apple's Steve Jobs had had a liver transplant in Memphis, so I googled Jobs on my little Berry and found which Memphis hospital he had gone to. Then I matched it with a nearby motel, so we just kept driving, a little nervous.
Tony said that no matter what happened, he was glad we were making the trip, that no matter how it turned out, we had made the right decision. I felt the same way. It was way too important not to try our all to get to the wedding, and to see all five kids.
At one point in late afternoon, the cell phone rang and it was my primary care doc, the one who had said go the ER when we had called at 6:30 a.m. It was our first conversation with him. He had seen the Hudson hospital medical records, so he knew what was up. But he was quite reassuring, in terms of taking the pain meds and just keep going. It was comforting to have a medical person second what we were doing.
I was able to sleep fairly well Friday night and we got on the road early, arriving at the house in Oxford around 9:30 a.m. There was Jayson, barefoot, coffee in hand, on the porch to greet us. All the bad just melted away, in the warmth and love of the children. (You have to understand that the 'children' are Mara, age 27, Hamilton 30, Jay 34, Chris 41, his lady Gwen 34, Ellie 46 and her husband, Rob, 46.) They had all been pretty devastated by the news and we had been talking to them several times a day, and they to each other. They had all arrived in time for the rehearsal dinner Friday night, so they were quite settled in. All but Rob & Els had actually come in Thursday, and had also gone out to the bride's parents (Bill & Annie Hollowell) for dinner that night, too.
Happily, I wasn't in any pain anymore. Amazing how it just dissipated overnight.
We spent the morning hanging out, until it was time to get dressed and go to the Hollowell's Foxfire Ranch where the wedding was to take place. We had to get there by 3 for lots and lots of photos. First they took the groom's family, in a variety of configurations and poses. Ham had spent the night at our house, holding to the tradition of not seeing the bride until the wedding.
Then, when it was Annette's turn with her family, we all went downstairs to wait. At one point. the reverend gathered us all together and said a special prayer for me, for Sister Vicki. I was very moved.
Finally, we all climbed to a van and went to the pavilion for the ceremony and reception. Since it had rained there for the previous 17 days, a wedding on the front lawn was out of the question. But the pavilion worked just fine, and it wasn't raining. I took a pain pill as a 'just in case,' not because I needed it.
It was thrilling to walk down the aisle with Tony to our seats. Jayson and Chris looked fabulous in the groomsman's tuxes, Mara looked gorgeous in her eggplant purple bridesmaid dress (each had a different vibrant color). Ellie looked incredibly elegant (I always see her in casual clothes, never dressed up) in a simple black dress, prepared to read from Kahlil Gibran's The Prophet on marriage, as part of the ceremony Ham and Annette had put together.
The ceremony was fabulous. The music was great -- including the church choir. Annette looked glorious in her floor-length white dress, Ham looked stunning in his cream colored tux. They glowed.
Afterwards, strangers kept coming up to me, some with tears in their eyes. to say how glad they were we had made it to the wedding. They all said they were praying for me. It felt like everyone there, all 250-plus people, knew about the diagnosis and how close we had come to missing this momentous event.
Tuesday, October 6, 2009
Wedding Part 2
The ER doc kept saying how sorry he was to have to deliver such news. I think I reminded of his mother. He had to tell her 8 years ago she had Stage 4 breast cancer. (She is still alive today & doing well.)
I never saw the hospital's head of surgery, but through Chris & the ER doc, he passed on word that I needed to be transferred to a larger medical center in Albany. He feared that if the adrenal mass started to bleed, they were not equipped to handle it. The ER doc wanted us to go to Albany Medical Center.
This was our first test of control. We had had a bad experience years earlier at Albany Med, when we walked out with our then 3-year-old rather than go through with a hernia operation there. We found it very cold & uncaring. We could not imagine feeling confident about treatment there. So we insisted the ER doc make arrangements at St. Peter's Hospital instead. He was reluctant at first, since he may have known people at Albany Med & the transfer arrangements might have been easier, but we were firm.
We waited in the windowless room in the ER for hours while transfer details were hammered out. I had morphine for the pain & anti-nausea drug for the vomiting, both of which were effective.
I wanted to ride up in the car with Tony but they were insistent I go by ambulance. Chris urged me not to argue, so I let my protests die.
We had been in the ER since 7 a.m. They were finally ready for transport about 3 p.m. The one bright spot was that I didn't have to go through St. Peter's ER also. Greenport Rescue delivered me right to a hospital bed in a semi-private room.
Now the other big plus about St. Peter's for us is that serving with Tony on a bank board of directors is a man who has served on the St. Peter's board for 17 years. Tony called him before we even left Hudson, to get the names of the top oncologist & surgeon at St. Peter's. Normally, neither Tony nor I would be inclined to make a call for any special favor, but there was nothing normal about the day.
Chris, who had spent the day shuttling between us in the ER & working in the hospice unit, followed the ambulance up, while Tony went home to feed Max (our 6 ½ year old Golden Retriever) and pick up some things. He arrived shortly after we did.
Now, in the hindsight of just 11 days later, the next couple of days at St. Peter's are a bit of a blur – nice nurses, lab techs, aides, being poked to draw blood every couple of hours round the clock, an 85-year-old roommate recovering from some lung problem who had a helluva cough & very loud daughters. On the 2nd night the president of St. Peter's stopped in briefly to check on me. I assured him I was very pleased with the care.
On day 2, they repeated the CT scan I'd had in Hudson. I had to drink something like a banana smoothie for the contrast. Somehow, the fact that I normally hate banana seemed so unimportant, altho' the mixture Hudson uses for their contrast scan was much more palatable.
The St. Peter's radiologist had a different interpretation from his CT scan, than I'd had in Hudson. The St. P's doc didn't think it was necessarily bleeding, that it could be some other fluid, and that in any case, it seemed to have stopped. Seems that part of the adrenal gland is in a tight area of the body, so any enlargement would cause pain – luckily. If it had been in a roomy part of the abdominal cavity, there would have been no pain, no reason to seek medical attention. So it all might have progressed much further before detection.
Actually, the Hudson ER doc found a chest x-ray I'd had a year earlier when I'd come in with bronchitis and it showed a tiny spot on the lung. I had never been told. It was missed. But given how much I hate the thought of surgery, perhaps it is better. I am surprised at how little I care that it was missed. It is what it is.
It is now two weeks later. I have now known I have lung cancer for two weeks. Trying to go back and create a coherent narrative of the last two weeks is difficult already, but I'd like a record.
It was the middle of the night on Wed/Thursday morning at St. Peter's when I realized it was crazy to let this stop us from getting to Ham's wedding.The pain was gone. The tests scheduled (needle biopsy, PET scan) could wait another few days.
The doctors were worried about my going, but we found a hospitalist who was new at St. Peter's who was willing to discharge along with pain meds prescription. He was perfect. When I asked what brought him to St. P's (once a journalist, always a journalist), he explained it is his day job, that he came to do research in joy & ethical living with someone in the area. (Tony recognized the name & said the guy has a reputation as a cultist.) But how could someone here to study joy not help us get to our son's wedding.
In what we quickly learned is typical hospital routine, Thursday morning was spent waiting while paperwork was done. The oncologist we had seen the day before and liked so much, Dr Arthur Sunkin, did not come around. We think he didn't want any part of the discharge. (When we saw him in his office 10 days later, he said he was glad we went to the wedding.)
So after a quick stop home to shower & pack & drop the dog at the pet sitter, off we went, pain meds & scans in hand. All the docs wanted us to have the scans in case we needed to seek emergency treatment along the way.
Thursday afternoon in the car was great. Weather was good. I was pain free & we were heading to our son's wedding & what was really a family reunion. I hadn't seen another of our sons, Jayson, in 17 months. He lives in the mountains of Colorado, where he owns a guide service (Crested Butte Mountain Guides).I had rented a big house in Oxford, MS, so we could all stay together.
Sunday, September 27, 2009
Wedding
I danced at my son's wedding last night. We danced to Stand By Me, each of us singing along as we danced.
Just four days ago, it looked like we wouldn't get to Hamilton's wedding in northern Mississippi. I went into the ER of our local community hospital in Hudson, NY, early Tuesday morning with what I thought was food poisoning and back pain. Because of the back pain and the lack of other food poisoning symptoms, the ER doc suspected kidney stones & ordered a CT scan.
But instead of kidney stones, it showed a mass on the adrenal gland that had some bleeding. A chest x-ray later in the morning turned up a spot on the lung.
From food poisoning to lung cancer in a few hours was a stunner. The world just stopped for my husband, Tony, and me. Joining us as the news unfolded was my stepson, Chris, who is the hospice case manager at this hospital. He sees the end of this diagnosis every day and I think he had a hard time not going there in his mind.
Just four days ago, it looked like we wouldn't get to Hamilton's wedding in northern Mississippi. I went into the ER of our local community hospital in Hudson, NY, early Tuesday morning with what I thought was food poisoning and back pain. Because of the back pain and the lack of other food poisoning symptoms, the ER doc suspected kidney stones & ordered a CT scan.
But instead of kidney stones, it showed a mass on the adrenal gland that had some bleeding. A chest x-ray later in the morning turned up a spot on the lung.
From food poisoning to lung cancer in a few hours was a stunner. The world just stopped for my husband, Tony, and me. Joining us as the news unfolded was my stepson, Chris, who is the hospice case manager at this hospital. He sees the end of this diagnosis every day and I think he had a hard time not going there in his mind.
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