Tuesday, December 18, 2012

December 18, 2012

Near the end of a long year.  Roger is doing very well, and is much better than this time last yearCa (which is about the time the bladder bleeding started)  It has been 3 years since the PSA starting doubling every 6 months, keeping in mind those were the days when the PSA levels were in the single digits.  PSA now in the 30-40 range, and we (Roger, I, and the medical professionals) consider that a good sign since the PSA is rather stable, for now.
Roger has Cardio Rehab 3 times a week, and has become a flirt with the nurses, trying to "bust a move" with           them all during class.  (They are all female).  Some days I get a chance to walk around the hospital grounds while he is in class, have a route of about a mile and a half, and sometimes time for a cup of java and/or errands.
I would love to go on and on about the daily struggles that are ongoing with medicare, health insurance, prescription insurance, billing, and such but it would turn into a PHD dissertation.  Needless to say, most weeks at least 4 hours are dedicated to talking to someone, somewhere about one of the above.  Maybe on another day.  I keep notes about these things since I can not possibly remember every conversation at this point as to what happened when, where and how.
Enjoying this time of relative good health, and wish good health for everyone reading.

Tuesday, December 4, 2012

Just a thought for the day

The Storm
"And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about."
— Haruki Murakami

Wednesday, November 21, 2012

Yah, good news!

Great news, the zytgia (chemo) has stopped the cancer growth, more later when we have less celebrating to do!

Tuesday, November 13, 2012

Sad day, loss of a friend

Last night Roger lost a dear friend.  Les Mahurin joined the phone company (AT&T) around the same time Roger did back in 1970 and developed a life long friendship.  Les passed away last night.  He had been diagnosed with dementia about 2 years ago but within the last 2 months the damage was swift.  Roger's hurting but has been getting some of that pain out by telling of his adventures with Les.  The adventures were many, as one would expect from Roger.  God Bless Peggy, Josh, Zach and the rest of the family.

Thursday, November 8, 2012

So goes the cardio

Cardio rehab- 12 weeks-3 days a week.  Walking, stretching, exercise.  Wednesday is diet class as well.  Roger excited? Nah, gotta go to town 3 more days a week, besides all the upcoming doctor appointments. Cardiologist appointment, CT scan at the Oncologist-a full week ahead of us.  Card night tomorrow with the gang.  Come join us.

Cardiac Rehab today

Unbeknowst to us Roger has been scheduled for Cardiac Rehab, could not find any paperwork trail on this, missed the appointment, received a call, rescheduled for end of month, received a call yesterday for opening today.  Journey continues...

Friday, October 26, 2012

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.

Wednesday, October 24, 2012

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.

Friday, October 19, 2012

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, October 16, 2012

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!

Monday, October 15, 2012

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.

Thursday, October 11, 2012

ZYTIGA® (abiraterone acetate) current treatment website

ZYTIGA® (abiraterone acetate):

'via Blog this'


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.

Monday, October 8, 2012

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, October 3, 2012


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.

Thursday, September 27, 2012

Good Day

Good day today, nice weather, Roger sat on the porch reading, and visiting with Gary Bell, cousin.
Received approval from prescription drug insurance for the chemo drug, Zytgia.  At a cost of $46/month.  Roger very happy.  This is a milder chemotherapy with fewer side effects reported.  Should receive it in the next day or two.  Roger is still zippy from the double steroid dose in preparation for the chemo which did not occur yesterday, slept 3 hours last night and tried all day to nap but couldn't, but he sure had the conversation going.  Was talking to Shasta, my dog, when no one else would listen.  Expecting he will do quite a bit of sleeping in the next day or two. Overall, doing okay but frustrated he can not walk very far, the mail box walk makes him worn out and breathless.

Wednesday, September 26, 2012

Chemo day, NOT!

Taxotere infusion was scheduled for today but after visiting with the doctor, Roger is moving on to Zytgia. (a chemo pill).  Taxotere was stopped because of side effects, and drug companies will not dispense Zytgia unless taxotere (Docetaxel) has been tried.  Now if we can just get our prescription drug company to play in the band.  Have to wait 2 more days to see what the co-pay will be (it is a $6000/month drug--yes there should be 3 zeroes).   Roger happy, happy not to be chemoized today.  (hey, I think I have a new word there).
Bleeding and seeping from bladder continues, and worsens when he is up and active.
Appointment with colorectal specialist scheduled for next week.  Don't know when, still need to make that call, but we have received the paperwork to fill out.
Straightened out the mess with urostomy supply order today after 2 weeks of calls between urologist and medical supply company.  Yea!
Pat weary, Roger zippy (from steroids), Pat happy that Roger feels good today!

Monday, September 24, 2012

Updates September 24, 2012

If you talk to Roger, he will say he is doing okay not great but okay.  And while this is true for him, I have trouble internalizing what he means by this.  That he just doesn't want to divulge much to the people who ask because he is embarrassed by the situation of being physically weakened, or maybe he believes if he says it enough it will be true.  Or maybe I'm just too close to the situation.

Wednesday will be the 3rd Taxotere (chemo) infusion.  oh, I need to back up

On September 5th, Roger received the 2nd infusion, 10 days later, on a blood lab, he had almost no white blood cells, so received a Nuepogena shot (blood booster in simplified terms), and another shot the day after.  He received one shot after the 1st infusion, two shots after the 2nd infusion.
(By the way, the second shot... we had to drive to Fayetteville, on a Saturday, game day, home game... easy getting home)

Diarrhea and hemorrhoids have gotten progressively worse over the course of his treatment.  To the point of needing to see a colon rectal specialist, which is scheduled in the first week of October.  Don't know when, but we did receive the paper work.  It is on my list of 1st priority items.

Speaking of 1st priority items, we are still waiting for urostomy supplies.  Roger cannot receive any more supplies through insurance until the urologist's office approves the order.  No orders have been approved yet, and we've received supplies since mid June.  The supply company will let orders go through without approval for 3 months at a time, so that is another thing I have on the list.  Have already called twice last week to the doc, and once to the supply place.


Roger takes a nap most days, he will sleep 4-5 hours during the night and the lack of nighttime sleep catches up with him sometimes,  sometimes he takes a sleep aid during the day.  He needs help sleeping because he fights sleep like no one I've ever seen.  He will complain of being tired, and yet, move around so he won't fall asleep. And then the bleeding in the bladder has started up again.

Just a discombobulated update.  Roger can't stand to let me sleep when he is awake.
So I'm a little weary too.

Love to all

Wednesday, September 5, 2012

September 5, 2012

Roger settles in for Round 2
Roger visiting with neighbor Louis Bishop Sr. (pre-hair loss)
Today was round two of taxotere (the chemotherapy drug).  Appointment at 11:15 for lab, got right in for lab.  Phlebotomist had trouble finding a good vein, had to poke him once in each arm.  Visit with oncologist scheduled for 11:30, we saw the doc at 12:15.  Scan in August, before chemo, as a baseline, shows cancer has spread to lymph nodes in abdomen, new areas not seen in the  January/February/March or April scans.  But blood work was good for the taxotere infusion today. Roger still holding his own.  The "buzz" from the steroids has diminished, doctor explains the fatigue will likely get worse now, hair loss was earlier than most (usually occurs at/about 2nd infusion or 21 days) Roger's hair started falling out at/about day 10 after 1st infusion.  Nausea has been kept in check for the most part, some mornings he still vomits, (Roger will tell you he hasn't had much vomiting, but then I am the one who cleans it up and hands him a cool rag to wipe his face).  Doctor says if we've kept the nausea in check thus far, the pharmaceuticals we have (4 prescription and 2 over the counter) will likely still work, and likely will Not get worse.  So goes the talk with the onocologist, not great news but not horrible either. (except for the new spots of cancer).  The infusion was scheduled for 11:45 and we got in the lobby around 12:30 , and a seat .   was available by 1 pm in the treatment room.  It took 5 more punches and 3 nurses to find a vein for the IV port and the infusion finally got started by 2.  Infusion went smoothly, Roger felt more groggy than the last time (like I mentioned, the steroids are not providing the energy lift he felt at the start)  We were out by 3:30 and ate out at La Palmas before heading home.

Tuesday, August 28, 2012

As the chemo goes, so goes Roger

Roger sports one of his new do rags
Hair started falling out in shower today, and Roger insisted on going to his barber, Gloria to get it ALL shaved off.  As will all things Roger, it needed to be done yesterday, so a trip to town was the order of the day.  Overall, he has a good level of energy, but doesn't sleep more than 4 or 5 hours at a time.  Roger helped run the wood splitter this morning, splitting up the wood from a dead tree on the property.  (Not to worry, he has a friend doing most of the work).
Roger at the barbershop (Gloria has been his barber for more than 20 years)

Monday, August 20, 2012

PCRI | Prostate Cancer Research Institute

PCRI | Prostate Cancer Research Institute:

'via Blog this'
This link should take you to the informational page for docetaxel-the treatment Roger is currently receiving.  First infusion August 15, 2012.  

Friday, August 10, 2012

today's appointment

Apparently, there was a lot of miscommunication going on in the doctor's  office, and apparently someone no longer works at the oncologist's in the scheduling department.  They know now Roger is not in hospice, and we did visit with the oncologist and his wonderful nurses.  And they explained it should not have happened (cancelled appointments, and hospice admittance).
Sooooo, we (Roger and I) are in better spirits.
However, Roger will begin chemotherapy on Wednesday.  Docetaxel, an IV drug, to be infused on Wednesday and then 2 more infusions three weeks apart.  Depending on how  Roger can tolerate this chemo, he can then start on Zytgia, an oral chemo which is low side effect.  Insurance pays on the Zytgia only after Docetaxel has been administered.   (not sure on the spelling of those names but close)
Sooooo, thanks for past, present and future prayers and thoughts,  very much appreciated!

Thursday, August 9, 2012

The nightmare of health care

Unbeknowst to us, Roger was admitted to hospice care.  How, you ask?  Roger and I are still in a questionable state of shock.
Back in May while Roger was in the hospital having the urostomy surgery, we had both the urologist and oncologist talk to us about the options.  there was still talk of rHadiation and chemotherapy.  An appointment was made with the oncologist for July 20.  I had called to check with the oncologist for an earlier appointment and asked if I could talk with a hospice provider for pallatative care.   Apparently, the call to the hospice ended with Roger being admitted to hospice.  When talking with hospice, the call ended with "you don't seem ready for hospice".
  So, I called today to check the time for the appointment.  And was told the appointment was cancelled.  So, I ask why.  and am told I needed to talk to someone else, and was put through to their extension, and of course am directed to voice mail.  Just not what I was wanting!  So I hang up and call again, get a different receptionist and ask why the appointment was cancelled and told the receptionist I was not going to the voice mail thing again.  Receptionist assures me I will talk with the person with an explanation.  And finally she tells me the person is going to call me back today.  And so I hang up.
And so I call back to get a receptionist at the appointment desk and get yet another and different receptionist (by this time I am thinking the "crazy" woman is becoming known) and explain (well okay, I did not explain so much as told) to the appointment person that Roger Bell has an appointment at 3 pm and he will be there.
Anxious to hear the story tomorrow at the oncologist appointment.  

Tuesday, July 10, 2012

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!

Monday, July 9, 2012

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.

Sunday, July 8, 2012

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!

Thursday, June 21, 2012

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.

Tuesday, June 12, 2012

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'

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.

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


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,

Thursday, April 26, 2012

April something, day 11

5 hours out of today's cystoscopy, the fluid coming out of the catheter is the same color as the solution going in.  This would be a good thing and I would like to breathe, but I am afraid.  So far so good!

Day 11

Still at the hospital.  Alum solution seemed to help, but Roger had clots and bladder spasms throughout the night.  This am the catheter was taken out then a few hours later the doc put in a new one.  The pain from the bladder spasm goes up into his back where the new stent went in... waiting now on scheduling.

Sunday, April 22, 2012

Little River Band - Help Is On Its Way

April 22, 2012

The sky is grey and white and cloudy
Sometimes I think it's hanging down on me
And it's hitchhike a hundred miles
I'm a rag-a-muffin child
Pointed finger painted smile
I left my shadow waiting down the road for me a while.

And so it is or seems to be going home is getting closer.
Urologist is taking out the foley catheter today, says the urine flow looks much better, few clots.  Praying for urine stream, praying for pee pee. :)
The stent (the double J-internal stent from the right kidney to bladder) seems to be working since yesterday's cystoscopy.  Doctor's comments: never seen such tenacious and numerous clots in bladder.  Doctor irrigated the catheter this morning and looked good, still a few clots but small and flow still Cherry Limeade.
As the stent appears to be working, the possibility exists that the external nephrostomy line and bag will be removed tomorrow.
Maybe I will be catching up with my shadow tomorrow.

my thoughts are scattered and they're cloudy
They have no borders no boundaries
They echo and they swell
from Tolstoy to Tinkerbell
Down from Berkeley to Carmel
Got some pictures in my pocket and a lot of time to kill.

Have tried to keep everyone updated, but sometimes its a struggle just to keep up with everything that is and has gone on the last week.  So most of my updates seem, yes, scattered and cloudy. Things have changed so quickly, yes, you might be going home tomorrow, no not today, yes soon, no sorry.  So it has been hard to keep up with the unexpected (or maybe they were expected but we were unaware of the complicated that might arise) and I have no recollection of who has or has not been updated and what I told this person or that person.  I am tired of calling, answering calls, texting (especially) but trying to maintain a pleasant demeanor, when those incidents occur.  And as crazy as things have been the last couple of weeks, I, too feel a bit crazed and exhausted.  And if there is a sense of urgency in my voice or texts, it's all because I have no idea what is happening next and little recall of what has gone on.

Hey, sunshine
I haven't seen you in a long time
Why don't you show your face and bend my mind
These clouds stick to the sky
Like  floating questions, Why?
and they linger there to die
They don't know where they're going and, my friend, neither do I

It looks like sunshine is on the way.  Transfusion is finished, Roger started getting the hives with the 1st of 2 bags of plasma, so they stopped the plasma, flushed with saline, gave him some benedryl and started the whole blood, and got Roger some much needed blood.  Catheter is coming out and nephrostomy bag is coming out...maybe.  Not sure where we're going or when, but know we will be here or there or somewhere in between...
Love to all,

Pat and Roger


Lyrics from Simon and Garfunkel's  "Cloudy"  you can find performances on youtube, it is a beautiful song...

Thursday, April 19, 2012

April 18, 2012

Early, early morning.  Life is 30 minutes at a time.  The continuous flushing of the bladder continues, and the overnight bag has to be emptied every 30 minutes. The bag is the catheter , aka Frank.  Frank's color is cherry limeade right now.  Every so often Frank's color is pink lemonade.  Cherry limeade is not so good, meaning there is still bleeding going on in the bladder.   But the occasional pink lemonade color gives hope to the situation.  The ultimate goal is Mountain Dew. well, mountain dew is a little more green that we would hope and has the look of something radioactive, but none the less Mountain Dew is merely a code name, right?  I digress, I tired, I can't sleep, I exhausted.  The newest development is the nephrostomy bag, a new tube, plumbing if you will, coming out of Roger's back.  It is a tube to drain the right kidney, hopefully to take some of the pressure off his abdomen, and lower back (an area of tumor growth and  a source of continual "5" pain.  (5 out of 10).  Roger has finally started to accept the pain medication.  and will even ask for it now.  This is a good development, as it also helps with the anxiety Roger feels.  Roger is ready to leave the hospital, this is the beginning of day  4 (5 if you count the ER visit, and personally 4 hours in an ER counts as a day in my book).
It is the beginning of a new day, maybe we will see Pink Lemonade, and sunshine

Sunday, April 15, 2012

Back to ER

So,  week was an impromptu CT scan of the lower right abdomen at the oncologist office.  Two weeks before Roger was in to see his regular family doctor with this new pain, in the area of the appendix.  Family doc was fairly certain it was not appendicitis and recommended the oncologist try to schedule the CT earilier than the end of April. and so, Roger was at the oncologist 2 weeks early for the scan with an appointment following.  The appointment (April 12) with the oncologist confirmed a new problem in the bladder.  A thickening of the bladder wall is cutting off the flow from his right kidney.  What followed was the oncologist making an appointment with the urologist.  We were expecting to hear from the urologist tomorrow-Monday.
But then, this a.m. Roger was bleeding in urine again, and by 4 p.m. we were headed to the ER, making it to the ER before he was in pain, or not much pain I should say.  Roger takes a pain pill before we head out, he knows what is coming next.  Get right in to ER and get a foley catheter put in.  Roger's regular urologist is on call and is familiar with the case.  ER doc says Roger has a choice to be admitted or she can show me how to flush the catheter.  So now I have a new skill to add to my resume.  We are back home and will be checking in with the urologist at 8 a.m.
Don't know if this episode of bleeding is from the prostate area or the new area of pain suppose we will find out tomorrow....

Friday, February 3, 2012

February 3, 2012

At the oncologist today, to discuss the bone scan from last friday.  Scan shows no increase in tumors, good news.(suggesting the Provenge is at work)  Oncologist will be checking with insurance for another new treatment for prostate cancer.  Zytiga  a chemotherapy pill taken in combination with prednizone.  Roger's weight is down to 159, and blood pressure was low today, doctor not too worried in light of what has been going on the last 6 weeks.

Monday, January 30, 2012

and I think to myself...

It has been seven days, one whole week since Roger's last visit to an ER.  We still celebrate when he pees, and do a victory dance when the urine is clear, or when a small clot has passed.  Roger is still tired and weak, but maybe finally on the mend.  For the next week and 1/2, he still has to refrain from doing too much, actually from doing much of anything, not supposed to lift anything over 5 pounds, that eliminates a lot.  Today, he is in good spirits.  I know because he is back to obsessing.  Obsessing is his hobby.  I'm still getting used to his hobby.  I'd rather he build birdhouses, or paint.  Today's hobby project was a new couch, a sectional to be specific.  By 5 pm, I tell him, okay, let's go.  He found one he liked sometime in November and has talked about it for the last two months on and off.  And so it came to a head today when he asks a new and different question about the furniture every hour.(and yes there are that many questions to be answered) By 5:30 pm, we are out the door.  And yes, found it again, and on sale. And so now, we will be having old furniture taken away, and new furniture delivered.  What his next project will be is up in the air.  But for now, my old Roger is back, feeling better, and today was a beautiful day.
And I think to myself
what a wonderful world.

Saturday, January 28, 2012

At one of our visits to the ER

ET at the ER

Update from December 21-present

So this is bound to be lengthy, and will take a while, as my notes are all over the place, and sometimes missing. This latest adventure in cancer began with a visit to Roger's family doctor on December 21.  Roger began having blood in urine with an occasional small clot.  Mind you he was seeing little clots for about 2 weeks before this, but not on a daily basis.  By the 21st it was becoming an everyday, every pee occurance.  At the office visit on Dec. 21, it was determined the blood was not from a urinary infection, and forwarded a referral to the urologist.  After a few calls to the urologist, Roger gets an appointment for Dec. 29.  Urologist doesn't take long to determine the need for a catheter, and the whole process begins.  Doctor has to use the rod like things to dilate the urethra, before he can finally put the catheter in.  Doctor does this with out medicating Roger, and I can see (I am still in the room) this is quite uncomfortable, and somewhat painful.  I make a note to make sure to carry some of the pain medications with me at all times, and/or make sure Roger takes something for pain before we step inside any and all doctor's exam room.  With the catheter in, we head home with a prescription for stronger pain meds than he had been given before.

3 days later with the intention of going through the past three weeks, I realize I will never finish this post.
It is 3 weeks, 6 runs to the ER, 2 Hospital stays, 1 surgery/cystoscopy/cauterization of prostate, 4 visits to urologist office, several trips to various pharmacies.  We are both at home this morning.  Roger has been catheter free for 5 days, still passing clots/blood but seems to be clearing.  Instructions to take it easy for another 2 weeks, and drink copious amounts of water.  Roger is tired and weak and sick and tired of being sick and tired.  I'm just tired.  together we are cozy at home with our wood stove keeping us toasty and that's good.

Friday, January 6, 2012

January 6, 2012

Roger is still in hospital.  Was ready to be discharged.  Removed catheter, but bladder just filled up, no urine, so new catheter was put in.  Waiting for blood in urine to clear up, will be a couple of hours before we know if Roger can go home today.  He will be going home with a foley cath.