A few hours alone

I cried on Thursday.  My friend, Pam, came over to stay with Roger while I had errands to run.  And it may not seem an odd thing to cry, but for me it has been a long while, months and months. I've been going full guns on crisis mode for the last 3 years and haven't had much time alone, which is time to think and contemplate for me.  And, grieving for me, is a very private and an alone thing.  I was in the car driving, and the flood started, and I was so sad.  Roger and I have had many adventures: fishing, riding on the ATV, camping, our poker nights with friends, horseshoes, just a lot of good stuff that defined our relationship,  and most of that is over, and I've been trying so hard to make sure that every opportunity to make Roger smile happens.  He just doesn't feel well.  Roger doesn't feel like Roger any more, and that's why I don't feel like me any more.  So when, I started crying, I knew it was not so much crying because I am sad but because I am grieving.  For the way things were are no longer.  Fishing and finding adventure has turned into waiting rooms and finding medical help.  And trying to find adventure in those waiting rooms and doctor visits.  And in reading back trying to find fun in times of medical crises.  And a lot of comments on my blog now seem so inappropriate,  that at the time was what made sense.
Grieving for what was and what is to become, Roger and I have had to reinvent ourselves.  And it seems I have had to reinvent myself so many times already, but for Roger it is especially hard.  He does not, in any way shape or form, like having to depend on someone else for help and care.   And it makes him angry and emotional some times and he hates getting emotional and that just makes him more angry.  All I can do is be there, because he does not want to be helpless, or sick, or dependent.  None of us do.  So here I am and it often seems being here is all I can do.  I know he is grateful.  I know he loves me as I love him.  And while the future is so very uncertain-here we are, Roger and I stumbling along together in this medical labyrithn trying to survive, reinvent, and hold it together.

Oncology report

Blood count today okay.  White blood count up a little high, but not critical.  Doc was glad to see Roger after all that has happened, (namely the heart attack).  Will continue on Zytiga.  Got his bone  strengthening shot  Xygeva today.  Roger thought he was going to get out of the clinic with out a shot.  Nope.  Roger okay, fatigue is a 5 today, pain nadda.  Small things are good. Doctor asked Roger if the heart attack had changed his mind about smoking, "No, Doc, its taken 50 years for it to catch up with me.  With the stents I ought to be good for another 50." and they both laugh.  I don't mention Roger's diet which includes fried food and frosted flakes with extra sugar among other horrible-for-you foods.

Thursday, now Friday

Roger is home!  came home Thursday afternoon.  Pat busy getting pills and such in order.  New pills and added back some older pills that were discontinued.  Roger Happy to be home reading the paper on his comfy couch.

Tuesday, I think,

Today was a little mixed up.  The NP had Roger and I all exited about going home, so from about 10 in morning until 1 we thought we were headed home.  (More than just a little scary to me).  The cardiologist then arrived around 3 and had no idea why discharge was even discussed.  Explaining again maybe by Thursday or Friday.  BUT, Roger is out of ICU, and in Telemetry area (has a portable heart monitor so he can move around easier, and a room with a shower/potty.  Doctor says everything looks good, but needs to be monitored a few more days.  It was a pretty serious heart attack and the blood thinners are causing some bleeding in the prostate/bladder worse.  We were fortunate to have arrived at the ER when we did.  He can received visitors, and now has a phone in the room.  Feel free to leave a message at the house or one of our phones and will call back with details.  Roger is going stir crazy, hates being in the hospital and I am sure would love company or calls.  Prayers for his friend, Les (his dementia has worsened and will likely have to be in a nursing home)  Love and Prayers appreciated!

October 15, 2012

Roger is doing very well.  He was having pain in his left arm and chest Sunday around 6 pm, gave Roger an asprin (baby) and headed to the ER.  Sure enough, Roger was having a heart attack, was promptly taken in to have 2 stents placed in 2 arteries on the back side of the heart, one artery was completely blocked, the other 99%.  By 9:30  was in ICU, where he remains tonight.  Everything seems to be going well, Roger is not happy to be in the hospital, but that in itself is a sign he is in good spirits.  Love and prayers are all we need.

ZYTIGA® (abiraterone acetate) current treatment website

ZYTIGA® (abiraterone acetate):

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Delete?

Thought about deleting the post from a couple of days ago, but then again, it is almost as much trouble to delete as to post another post.  I have frustrating, awkward days, but most days are okay.  Always trying to keep my senses about everything, but not always gracefully.  Prayers and thoughts for keeping the graceful in grace.  thank you.

7 days

Dare I say it?
today has been 1 week, since the last doctor appointment, 7 days with no doctor office waiting rooms, forms to fill out, waiting time.  The next appointment is scheduled for next wednesday at the colon-rectal clinic.  Maybe good is in order, I know 7 days is a blessing.  With Roger's pain diminished, it has been more pleasant and less stressful.  And the things he saw the colon-rectal doctor for (no details) have diminished as well.  Rainy day here, good day for napping, soup, and old tv programs.  Pam plans to visit today (broken toe and all...) so hoping for napping or cleaning. Really need to clean, too tired to go to town.  Love to all, thanks for prayers and thoughts on our behalf.

Provenge info (treatment Roger went through in fall 2011)

Provenge, Better Survival Than Reported and a Better Economic Value for Men with Advanced Prostate Cancer :: Malecare's Advanced Prostate Cancer:

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Facts related to the "blood booster" shots Roger took during Taxotere

Safety Plan for (ESAs) Used to Treat Chemotherapy-Related Anemia :: Malecare's Advanced Prostate Cancer:

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October 8, 2012

Life is on an even keel around here.  Roger doing okay, lot of pain gone from the muscle spasm problem.  I find myself in the role of pessimist, wondering what is next.  Day by day, one moment at a time.  Making the best of the non-crisis days, trying to catch up on sleep, but not feeling rested.      
Six hours is about the most Roger sleeps at night, and he tries to let me sleep when he doesn't wake me up getting up and out of bed.
Will be taking the Zytiga at 4 a.m., hoping it will be a little easier since we are having a hard time with the 3 hour period of not eating or drinking anything but water.
The pessimism comes from being the one to clean up all the messes that occur on a day to day basis, the body fluids I clean up on the carpet, the bed, and clothes.  Changing the urostomy bag and/or appliance.  Dispensing the meds into the little sorter things that I thought only "old" people used.  Keeping things in everyday life becomes difficult (I forgot to pay the trash service, fortunately they are a small company and understanding) doing the dishes and laundry become herculean tasks.  And people ask how Roger is doing... I answer in awkward answers, not knowing anymore they know and listening to their suggestions, and then toning them out trying to think and do what I can to keep Roger comfortable.  And the doctor visits, I have to take my notebook and take notes for the simplest instructions, and refer back to my notes on a question to question basis day to day.  Most weeks involve at least one doctor or another and the only blessing comes from those weeks, now months we have not had to go to the ER or hospital.  The doctors' offices are far kinder it would seem now.
and I will say my prayers tonight ...

Wednesday

Appointment with yet another doctor today to check on the rear end of things, henorrhoids that is.  Roger not looking forward to this is any way shape or form, and this is very understandable.  New chemo, Zytiga, is causing further fatigue,  just enough energy to sit on the porch in the sunshine.  Calls to make in to doctors, urine output is dark.  Will update after procto visit.