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.
Roger and his sister, Becky relax by the creek
Thursday, June 21, 2012
Tuesday, June 12, 2012
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.
Sunday, May 20, 2012
Sunday Night May 20
Out of the hospital, near 3 weeks, now. Life has been mostly everyday kind of things. Roger has been out fishing at the dock, or trolling out on the lake with Jeff Bell (no relation) many days. And I've been getting some projects around the house going. No, I haven't painted the insides of the exterior doors yet, nor have I finished the school desk chair, nor have I gotten much house cleaning. The weather is great and the garden is coming along--peas are ready to pick, and we've enjoyed about 25 strawberries thus far.
Friday was a visit to the oncologist, and leaving with a referral to radiology. Radiology will be calling the first of the week to begin radiation on the prostate tumor pushing in on the bladder. The Provenge is apparently doing its job as no new areas of tumor showed up on the latest CT scan.
Roger has had blood in his urine for four days intermittently, and no trips to ER for blockage from clots.
Here's a YAY for 3 weeks away from the hospital.
Friday was a visit to the oncologist, and leaving with a referral to radiology. Radiology will be calling the first of the week to begin radiation on the prostate tumor pushing in on the bladder. The Provenge is apparently doing its job as no new areas of tumor showed up on the latest CT scan.
Roger has had blood in his urine for four days intermittently, and no trips to ER for blockage from clots.
Here's a YAY for 3 weeks away from the hospital.
Saturday, May 12, 2012
CT Scan May 11, 2011
- The good news is Roger is still peeing clear. A major deal, something that only a few years ago was taken for granted. The not so good news is that the CT scans are becoming a more frequent event. The tumors are more aggressive and the urologist called the oncologist to (hopefully) suggest some method be used to shrink the tumors. Roger is holding steady at 156 lbs. (pre April 2011 weight was 176) but is weak.
Wednesday, May 9, 2012
updates
Follow-up at Urologist today, the follow-up from the 11 days in the hospital. Urologist strongly suggested seeing the oncologist as soon as possible. I explain to doctor that if I call the oncologist office they will tell me: we have an appointment in July and we will not hear back. The doctor then says he will personally call and make sure we get in sooner. Lo and behold three hours later Roger receives a call from oncologist to be at the clinic for a CT/Pet scan Friday morning.
The follow-up therefore, and hither to, was good in part. Roger has no blood in urine, none visible and none microscopically. Still has pain at end of urination from stent, that is normal. But doc did not know of a reason for his morning nausea. No more flomax (prescription for helping urine flow) as the last cystoscopy was successful at clearing and opening the bladder and urtherea where the tumors are growing. The urologist explained this was only a temporary answer, since the tumors will continue to grow and as the tumors invade new areas the same bleeding will occur again.
CT scan is scheduled for Friday a.m. and follow-up with oncologist will be sometime next week. Until then we will enjoy the beautiful weather, will try to work in the garden (my right knee is messed up, fills like someone sneaked in and put a brick in there looks like I'll be tripping to the doctor), throw the frisbee for the dog (who waits anxiously by the driver's door of my car everytime I get ready to leave) and relax and take naps as often as possible.
Love to all,
Pat
The follow-up therefore, and hither to, was good in part. Roger has no blood in urine, none visible and none microscopically. Still has pain at end of urination from stent, that is normal. But doc did not know of a reason for his morning nausea. No more flomax (prescription for helping urine flow) as the last cystoscopy was successful at clearing and opening the bladder and urtherea where the tumors are growing. The urologist explained this was only a temporary answer, since the tumors will continue to grow and as the tumors invade new areas the same bleeding will occur again.
CT scan is scheduled for Friday a.m. and follow-up with oncologist will be sometime next week. Until then we will enjoy the beautiful weather, will try to work in the garden (my right knee is messed up, fills like someone sneaked in and put a brick in there looks like I'll be tripping to the doctor), throw the frisbee for the dog (who waits anxiously by the driver's door of my car everytime I get ready to leave) and relax and take naps as often as possible.
Love to all,
Pat
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