I had another miserable day yesterday that Hospice somehow managed to turn around. No pain. Nausea and abdominal distention and fullness as well as overwhelming weakness are my nemeses. I'm not doing very well with the transition from very active to almost completely inactive. I generally don't even have the energy to work on Emma's quilt most days, which makes the chances of finishing it pretty slim - also depressing. We saw both the Hospice social worker and my nurse yesterday and today there is a brand new hospital bed in the family room, ready for when I no longer feel capable of making the trip upstairs for bed.
I'm currently ensconced in my recliner with Philip's laptop, which has a new keyboard and battery so it can easily move back and forth between his room and the family room. I feel like this will cheer me up, this internet access without having to sit up in a chair.
One thing about staring impending death down is that it has inspired me to get holiday preparations taken care of much more efficiently than usual. No tree this year, which is weird, but the family room is full of greens and poinsettias and stockings and looks very festive.
Even with the equipment delivery this morning, I feel better today, so far, than yesterday. Let's just keep hoping for more of that.
Lisa
Thursday, December 10, 2009
Monday, November 30, 2009
What's Up With the Doc 84? - The Overwhelms
Sorry to be so long away, but it's been a crazy couple of weeks. My energy level continues to decline and resulted in a rather precipitous decision to start my total disability at work last Tuesday. While driving isn't painful, it does seem to take it out of me to drive an hour to work and back and was leaving me little reserve to do anything meaningful. So now I am on total disability. Robert went today to pick up my personal items from work and to drop off pagers, phone and badges. Much paperwork was required - paperwork for the FMLA, paperwork to start a long term disability claim, paperwork for social security. That took up quite a bit of time and energy last week and especially Saturday morning, when I finished the Social Security application. I also saw the oncologist for Zometa on Tuesday and, while we agreed to stop Gemzar, we decided not to do a Hospice referral until I need "help" at home, whatever that is. More on that later.
Emma got in during the wee hours on Tuesday. Lindsay came up later that day and the cooking began Wednesday with turkey stock, cranberry dressing, cornbread for stuffing and desserts. Thursday I sat in the recliner and watched Lindsay and Emma, with help from Hannah, put together one of the very best Thanksgiving meals I have ever had the pleasure to enjoy. Not only was the food great, there were no dustups of any kind and an early meal meant early cleanup and getting to bed at a reasonable time.
Friday I slept in and spent the day with Emma - she studying physiology while I worked a little on her quilt. Her father picked her up at 3:30 am Saturday to head for an early flight and once I got up I hit the Social Security website. I can only imagine that it was sitting in the chair at the computer for all those hours that resulted in the remarkable increase in pain I experienced by Saturday evening. Nothing specific. Nothing I could point to as something new. Nothing to say I had an infection or fracture or anything I could think of except all that sitting.
I was not much better on Sunday except that by the afternoon the pain had localized to my left mid back - a new spot for me. I called the doctor on call and we increased my pain meds by 50% and agreed that I would avoid the emergency department unless something new or different happened. So this morning I was on the phone to the oncologist's office first thing for more pain meds and the Hospice referral. They will be out Wednesday and I am looking forward to relaxing into their fine, always available, supportive care.
Today I feel better from the pain standpoint, although a bit high with the increased dose. That's unusual for me and I don't like it much, but I'm sure I'll adjust. I'm pretty sure Hospice will be changing my meds, anyway, so here's hoping for a smooth transition to the next phase of this disease.
I hope you all had as happy a Thanksgiving as I did with my family and ate as well.
Emma got in during the wee hours on Tuesday. Lindsay came up later that day and the cooking began Wednesday with turkey stock, cranberry dressing, cornbread for stuffing and desserts. Thursday I sat in the recliner and watched Lindsay and Emma, with help from Hannah, put together one of the very best Thanksgiving meals I have ever had the pleasure to enjoy. Not only was the food great, there were no dustups of any kind and an early meal meant early cleanup and getting to bed at a reasonable time.
Friday I slept in and spent the day with Emma - she studying physiology while I worked a little on her quilt. Her father picked her up at 3:30 am Saturday to head for an early flight and once I got up I hit the Social Security website. I can only imagine that it was sitting in the chair at the computer for all those hours that resulted in the remarkable increase in pain I experienced by Saturday evening. Nothing specific. Nothing I could point to as something new. Nothing to say I had an infection or fracture or anything I could think of except all that sitting.
I was not much better on Sunday except that by the afternoon the pain had localized to my left mid back - a new spot for me. I called the doctor on call and we increased my pain meds by 50% and agreed that I would avoid the emergency department unless something new or different happened. So this morning I was on the phone to the oncologist's office first thing for more pain meds and the Hospice referral. They will be out Wednesday and I am looking forward to relaxing into their fine, always available, supportive care.
Today I feel better from the pain standpoint, although a bit high with the increased dose. That's unusual for me and I don't like it much, but I'm sure I'll adjust. I'm pretty sure Hospice will be changing my meds, anyway, so here's hoping for a smooth transition to the next phase of this disease.
I hope you all had as happy a Thanksgiving as I did with my family and ate as well.
Monday, November 16, 2009
What's Up With the Doc 83? - Searching for Some Energy
That's about it as far as what's up with me this week. Robert and I had a lovely trip to Long Island where the food and conversation were excellent. We lost at bridge but had a great time playing. Mostly, I just feel like someone hooked a shop vac up to me somewhere and sucked every bit of energy out of me. I'm not tired - it's not sleep I need - I just can't even describe what it takes out of me to walk across the room, much less climb a single flight of stairs. I've decided to forego that last chemo treatment on December 1st before the scan scheduled on the 8th because I can't conceive of or bear the thought of this getting any worse.
I know I keep saying this and then putting it off, but I suspect that with scan results in hand, both disability and Hospice will be fully in place before the end of the year. And for the first time throughout this entire process, I'm angry and sad at the same time. I want to feel better than I do. I want to be able to do more with whatever time I have left than sit in my wonderful recliner or lie in bed hoping for strength.
This week I have no cancer-related treatments. Next week I get Zometa only and it's Thanksgiving! Emma gets in Monday and the festivities will begin in earnest. I'll take the following week off and then have the scan on the 8th and we'll see what that shows. Until then, all I can do is take this one day at a time, do what I can do and be gentle with myself.
Lisa
I know I keep saying this and then putting it off, but I suspect that with scan results in hand, both disability and Hospice will be fully in place before the end of the year. And for the first time throughout this entire process, I'm angry and sad at the same time. I want to feel better than I do. I want to be able to do more with whatever time I have left than sit in my wonderful recliner or lie in bed hoping for strength.
This week I have no cancer-related treatments. Next week I get Zometa only and it's Thanksgiving! Emma gets in Monday and the festivities will begin in earnest. I'll take the following week off and then have the scan on the 8th and we'll see what that shows. Until then, all I can do is take this one day at a time, do what I can do and be gentle with myself.
Lisa
Monday, November 9, 2009
What's Up With the Doc 82? - Up With Steroids
I wish I could say that I understand this roller coaster, but I don't. Last Tuesday I increased my pain meds and decreased my steroids. I was feeling more generally not well than usual, which usually calls for an increase in pain meds. By Thursday I was feeling a bit better overall and had decent days Friday and Saturday. Then at 2:30 am on Sunday the hammer fell and I woke up with really severe pain everywhere I've ever had pain. I took oxycodone every couple of hours until I could get back to sleep and then spent Sunday doing absolutely nothing except lying in the recliner watching TV. I increased my steroid dose back to the highest dose I've been on and the pain is now firmly under control. Nausea required treatment on Sunday, but none since. And I'm weak as a kitten - now having to rest while making the bed in the morning.
Getting to and from work is still OK so I'm still doing that and what I do at work isn't the least physically challenging as long as there is a handicapped spot close to wherever my meeting or office for the day is. So I'm still doing that but don't expect that to continue much beyond the end of November. Now I'm starting to think about the total disability red tape and getting myself organized for that next step in this journey.
Thanksgiving is fast approaching. I think I have the menu finalized and the turkey ordered. I've never ordered from this place before and they haven't confirmed my order yet, but a quick internet look see would indicate that that's par for the course for this local fresh turkey farm so we should be fine.
Applications are in for Hannah and Emma's next educational round and they are in the no fun waiting period. Lindsay is starting work on her applications for her next round and loving every minute of the process - not. She and Jacob were up for the weekend. Great food and good fun were had by all. This weekend Robert and I are headed for Long Island to have dinner and hopefully some bridge with my cousin and her husband.
Tomorrow is the oncologist and more chemo so think gentle thoughts for how it decides to treat me this week.
Getting to and from work is still OK so I'm still doing that and what I do at work isn't the least physically challenging as long as there is a handicapped spot close to wherever my meeting or office for the day is. So I'm still doing that but don't expect that to continue much beyond the end of November. Now I'm starting to think about the total disability red tape and getting myself organized for that next step in this journey.
Thanksgiving is fast approaching. I think I have the menu finalized and the turkey ordered. I've never ordered from this place before and they haven't confirmed my order yet, but a quick internet look see would indicate that that's par for the course for this local fresh turkey farm so we should be fine.
Applications are in for Hannah and Emma's next educational round and they are in the no fun waiting period. Lindsay is starting work on her applications for her next round and loving every minute of the process - not. She and Jacob were up for the weekend. Great food and good fun were had by all. This weekend Robert and I are headed for Long Island to have dinner and hopefully some bridge with my cousin and her husband.
Tomorrow is the oncologist and more chemo so think gentle thoughts for how it decides to treat me this week.
Friday, October 30, 2009
What's Up With the Doc 81? - A Little Down
After an absolutely delightful trip to New Mexico I returned to my real life in Connecticut on Monday. I saw the oncologist for Gemzar and Zometa on Tuesday and have had no real problems as a result, but my fatigue level is getting worse and worse. I don't know whether it was the travel, the slightly lower steroid dose, the chemo, or a combination of all three, but I'm having trouble getting myself up and at 'em in the morning and by the time I get home from whatever small amount of time I spend at work I collapse into the recliner and don't generally move except for dinner. My pain level is also increasing and I'll have to raise the Oxycontin dose with the next refill and I'm noticing swelling in my feet and ankles and abdomen.
I'm scheduled for two more doses of Gemzar, which will make a total of eight, and then a scan on December 8th. I don't expect anything different from this scan than we have seen with all the preceding ones since August of 2008 - slow but clear progression. And that will mean the end of Gemzar and all active treatment for the cancer (I will continue the Zometa for the time being but it's not considered active cancer treatment). Between now and then I will try another steroid dose reduction next week. If I feel worse I'll bump back up to the original dose and leave it be. If I feel better I'll keep trying small, slow dose reductions until we see how low I can go.
There is still much on my horizon. I've started on Emma's quilt, family will be here for Thanksgiving and Christmas and I suspect there will be other visits from family and friends. I'm just having a little trouble, at this point, seeing more than a few weeks ahead of my nose. I know there's nothing to do but keep putting one foot in front of the other and see where it leads me, but I'd like to get my smile back to keep me company.
This weekend will be graced with a visit from Lindsay and Jacob and a batch of green chile stew made from the chiles I brought back with me from New Mexico. The weather in Connecticut swings wildly from beautiful, crisp and clear to gray, dreary and wet but at least we don't have 2 feet of snow! (Sorry you guys in Colorado.)
More next week when I know how the next steroid experiment goes.
Lisa
I'm scheduled for two more doses of Gemzar, which will make a total of eight, and then a scan on December 8th. I don't expect anything different from this scan than we have seen with all the preceding ones since August of 2008 - slow but clear progression. And that will mean the end of Gemzar and all active treatment for the cancer (I will continue the Zometa for the time being but it's not considered active cancer treatment). Between now and then I will try another steroid dose reduction next week. If I feel worse I'll bump back up to the original dose and leave it be. If I feel better I'll keep trying small, slow dose reductions until we see how low I can go.
There is still much on my horizon. I've started on Emma's quilt, family will be here for Thanksgiving and Christmas and I suspect there will be other visits from family and friends. I'm just having a little trouble, at this point, seeing more than a few weeks ahead of my nose. I know there's nothing to do but keep putting one foot in front of the other and see where it leads me, but I'd like to get my smile back to keep me company.
This weekend will be graced with a visit from Lindsay and Jacob and a batch of green chile stew made from the chiles I brought back with me from New Mexico. The weather in Connecticut swings wildly from beautiful, crisp and clear to gray, dreary and wet but at least we don't have 2 feet of snow! (Sorry you guys in Colorado.)
More next week when I know how the next steroid experiment goes.
Lisa
Friday, October 23, 2009
What's Up With the Doc 80? - Land of Enchantment
I'm sitting at my sister's computer for this week's update, enjoying the New Mexico sunshine streaming in through the window. I've already had my first Lotaburger and tonight holds the promise of chile relleno enchiladas and El Modelo tamales. My mother beat me here yesterday, Chris and Sheri arrive this afternoon and Emma and her buddy tonight. My best childhood friend was here to greet me last night and will be over for gossip and giggles for a while this morning before she heads back home and my stepbrother, Bill, stopped by last evening. He was here for work and also heads home today. Tomorrow we all make fools of ourselves at the CSU/UNM volleyball game, the austensible excuse for this little gathering. More than anything, I am thrilled to be in my beloved New Mexico with friends and family with the largest challenge on the horizon being getting my frozen green chiles home with me on Monday.
After the post-chemo pain resolved last week I was more fatigued than usual until the middle of this week. I attribute that to the combination of chemo and my steroid dose reduction so I've decided not to reduce the dose further until the week after my next chemo. I will enjoy my prodigious appetite while able to enjoy the New Mexico cuisine and not worry about fatigue or nausea cramping my style. That's it for where things stand with current symptoms.
I read a news release this last week about an article published in the International Journal of Cancer about survival improvement in people with stage IV lung cancer and bone metastases who are treated with Zometa. It was a small study and the patients were put on the Zometa for bone pain. Turns out it didn’t help the pain, but overall median survival in the group treated with Zometa was over 19 months, while survival for the chemo only (carbo/taxol) was just over a year.
That’s a big difference! In fact, I will reach the Zometa group’s overall median survival on Sunday. My oncologist started me on the Zometa months ago when I started to develop new bone lesions. As you know, I’m on pain meds to control the pain, but we’ve continued the Zometa to try to prevent more new bone lesions and to delay time to fracture of any that I have. At least a part of me feels like the Zometa is playing a significant part in keeping me alive and keeping me active. I feel like I live a charmed life regarding my oncologist and his educated guesses about how to treat me.
That's it for now. I'll be back in Connecticut Monday afternoon and pick up with enjoying the New England autumn after this little break of enchantment.
Lisa
After the post-chemo pain resolved last week I was more fatigued than usual until the middle of this week. I attribute that to the combination of chemo and my steroid dose reduction so I've decided not to reduce the dose further until the week after my next chemo. I will enjoy my prodigious appetite while able to enjoy the New Mexico cuisine and not worry about fatigue or nausea cramping my style. That's it for where things stand with current symptoms.
I read a news release this last week about an article published in the International Journal of Cancer about survival improvement in people with stage IV lung cancer and bone metastases who are treated with Zometa. It was a small study and the patients were put on the Zometa for bone pain. Turns out it didn’t help the pain, but overall median survival in the group treated with Zometa was over 19 months, while survival for the chemo only (carbo/taxol) was just over a year.
That’s a big difference! In fact, I will reach the Zometa group’s overall median survival on Sunday. My oncologist started me on the Zometa months ago when I started to develop new bone lesions. As you know, I’m on pain meds to control the pain, but we’ve continued the Zometa to try to prevent more new bone lesions and to delay time to fracture of any that I have. At least a part of me feels like the Zometa is playing a significant part in keeping me alive and keeping me active. I feel like I live a charmed life regarding my oncologist and his educated guesses about how to treat me.
That's it for now. I'll be back in Connecticut Monday afternoon and pick up with enjoying the New England autumn after this little break of enchantment.
Lisa
Wednesday, October 14, 2009
What's Up With the Doc 79? - Down With Steroids
Today is the day after chemo (Gemzar) and every time is a new experience. Yesterday I had a rather sudden and dramatic increase in all my pain at about 7 pm, 4 hours after the chemo was started. Same thing happened after #2 (yesterday was #4), but it was 24 hours later rather than 4 hours later. None of that after #1 and #3. I'm guessing that that's because I got #1 and #3 with Zometa, the drug they give me to treat bone pain, prevent fracture and slow down the progression of the bone metastases. It's only given once every four weeks and I'm guessing that maybe it protects me from that post-chemo pain syndrome. We'll see. If no pain next time I'll be ready with quick draw pain meds after #6.
I talked to the doctor about my hip pain. I've pretty much decided to let it be for now. As long as I use my cane for any distance and stay off it as much as I can the pain is controllable with a minimal increase in my usual pain medication regimen. Right now I don't see any reason to clutter my life with scans and appointments to consider the possibility of additional radiation. I'll reconsider if the pain threatens to stop me from doing things I want to and would otherwise be doing.
Finally, we talked about the steroids - what they're intended to do and the side effects I'm experiencing. The weakness that makes it difficult for me to get up out of a chair is the most worrisome, although I'm not liking my fat face or fat me. We decided to very slowly try to decrease the dose to one that will lighten up on the side effects but still control the nausea and not let the bone pain get any worse. That's a 25% reduction per week, so I'll let you know how that goes.
Other than that, Emma is recovering from her experience with H1N1 flu and I fully approve of the way the university handled that situation - online reporting, automatic excused absences and test rescheduling, keep 'em out of the health center. Lindsay and maybe Jacob coming for at least part of the weekend. The Fantasticks is at the Long Wharf Theatre in New Haven and I think we'll go wallow in that with a nice meal thrown in for good measure.
I talked to the doctor about my hip pain. I've pretty much decided to let it be for now. As long as I use my cane for any distance and stay off it as much as I can the pain is controllable with a minimal increase in my usual pain medication regimen. Right now I don't see any reason to clutter my life with scans and appointments to consider the possibility of additional radiation. I'll reconsider if the pain threatens to stop me from doing things I want to and would otherwise be doing.
Finally, we talked about the steroids - what they're intended to do and the side effects I'm experiencing. The weakness that makes it difficult for me to get up out of a chair is the most worrisome, although I'm not liking my fat face or fat me. We decided to very slowly try to decrease the dose to one that will lighten up on the side effects but still control the nausea and not let the bone pain get any worse. That's a 25% reduction per week, so I'll let you know how that goes.
Other than that, Emma is recovering from her experience with H1N1 flu and I fully approve of the way the university handled that situation - online reporting, automatic excused absences and test rescheduling, keep 'em out of the health center. Lindsay and maybe Jacob coming for at least part of the weekend. The Fantasticks is at the Long Wharf Theatre in New Haven and I think we'll go wallow in that with a nice meal thrown in for good measure.
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