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.

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.


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.