2 days of calls

After 2 days of calling between primary care physician and urologist.  We give up and call our case manager.   Within 2 hours Rogers has an appointment to have a pic line put in and followed by a visit to an infusion center for 1st infusion of antibiotics and lessons on how to do the infusion at home.  You'd thought we'd learned this by now to call the case manager first.  Early bed time tonight the appointment for pic line is at 8:30 am in Fayetteville.  Night, night!

July 10, 2012

I wake up at 10 am, frantic, wanted to start calling doctors at 8.  Roger is calm as a cucumber!  I grab the phone (doctor numbers are on speed dial now) and Roger says "My neck feels better, I can hold my head up without hurting." So you don't want me to call the doctor?  "no, but I would like hotcakes and bacon for breakfast, and maybe some strawberries if there are any left"  I sigh.   And start breakfast.
After breakfast I try to explain to Roger the reasons why he should go today, you know, just to check things out.  "no, don't need to go to the doctor, but I do need to go to town and you need to get whatever is on your list"   On the journey into town Roger comments is neck is 100% better. So, I say you can turn your head and not feel any pain?  and he says well, okay, 50% better.  I know where the other 50% has gone-- my neck (pun intended)  
I sit here writing this and the family doctor's office calls, the results from last weeks urine culture shows a staph infection that cannot ordinarily be treated with oral meds, he will probably need IV antibiotics.  The office is faxing the info to the urologist, call the urologist after an hour or so or at least by the end of the day to see what the urologist wants to do.  
So.... we wait.

July 8 ,2012

I had to check the newspaper to see what day it was.  I vaguely remember getting the Sunday paper, so I  kinda thought it was still Sunday.  The days are blurry and meld into one another.    Tomorrow Roger  will travel to another doctor.  I'll start with his regular doctor call and try to get an appointment and then call the oncologist.  Roger has a pain near the base of the skull on the left side.  Pretty sure it is one of the locations of tumor growth, but  maybe it is (as Roger will tell you) just a crick in his neck.  He has admitted, finally, it could be tumor, maybe...  I called hospice last week to talk to Circle of Life,  the oncologist approved the order, but Roger answered the phone when they called back and didn't think we needed to talk to them yet and in talking the hospice lady said he sounded like he was not yet ready.   And he has yet to start chemotherapy, and hospice here is strictly hospice (prognosis of less than 6 months to live).  I was hoping for just palliative care which is help with symptom control and while hospice does palliative care, hospice won't come in until the patient has more or less exhausted curative options.  From our conversations with the urologist, chemotherapy will not do much at this stage, but on the other hand the Provenge treatment has at least stopped the metastasis, and on the other hand the tumors that existed before the Provenge are still increasing.  Roger is weak and has lost a lot of weight.  He has gained about 4 pounds since the urostomy surgery, but at 146 pounds is frail.  I will continue to support Roger in whatever he wants to do, but it does hurt my heart to see him struggle.
As for the last 4 days he has been taking the Hydocodone, or Oxycodone every 6 hours, along with an occasional valium, and/or a muscle relaxant when he can't stand the pain.  And tho it sounds a lethal combination, at least he can sleep (between 12-16 hours a day).  Trying to be upbeat, and we've managed to get friends over to play poker and it works to get his mind off everything.  Don't know what tomorrow will bring, not sure I want to know, come what may, we will figure it out.  As for me, I am here by God's grace  and the prayers and support  of so many of you out there!

Urologist today June 21, 2012

An impromptu visit to the urologist today.  Bleeding from bladder continues despite the urostomy.  The bleeding is "normal" at least for a month.  The urostomy surgery was June 1, and today was the last of the tubes out.  The stents from the kidneys were removed, so Roger has no more tubes, just the urostomy.  Anxiety rules the day.  Roger talked with the urologist about upcoming treatments at the oncologist.  Radiation could cause further damage to his lower intestines, and body parts, chemotherapy will not likely do much at this point.  --Roger is at the point of receiving pallative care, that is just making him as comfortable as possible.  Not to be confused with hospice which is defined as end of life care with less than 6 months to live.  As there really is no way of knowing how long Roger might have, as long as problems that arise can be fixed, the doctors will continue to fix him.  The urostomy means the end of ER trips for now.  So that in itself is a good thing.  And I wish I had more good to share.  Roger is 146 pounds, lost another 10 pounds with the last hospitalization for the urostomy surgery.  He is frail, anxious and tries to not think too much about cancer.  He is slowly getting his appetite back, but pain meds are causing constipation, taking meds for constipation causes diarrhea.  It is a vicious cycle.  
Please consider reading "When Someone You Love Has Advanced Cancer: Support for Caregivers"  http://www.cancer.gov/cancertopics/coping/When-Someone-You-Love-Has-Advanced-Cancer/
This is a National Cancer Institute publication that will explain what Roger and I are going through much more than I can explain.

Updates forthcoming

Updates soon, just feeling quite drained at present

Bill of Rights for wives and partners

From the "His Prostate Cancer" website- Bill of rights for wives and partners

• Cry as often as you need to but look for humor everyday.


• Worry all you want but know that it won’t change a thing.



• You can be a tower of strength and still fall apart.



• You don’t always have to know the right thing to say.



• Accept that you will never be the perfect wife/partner.



• Forgive yourself for making mistakes.



• On days when you have nothing to give, know that it will be enough.



• Take care of yourself and don’t feel guilty about it.



• Give yourself permission to forget about prostate cancer for a day.



• Hate the disease but always love the man.



• Grieve what you’ve lost and celebrate what you’ve got left.



• Let go of the illusion that you can handle this alone.



• When the burden is too heavy, give it to God.

Prostate Cancer Women - Sharing The Load

Prostate Cancer Women - Sharing The Load:

'via Blog this'