Surprisingly few side effects so far, all minor.  Some constipation last week (razor blades).  I was able to work all weekend without any problems.  
Stephanie was able to make my appointment for late on Monday which gave both myself and my wife a break.  She’s been leaving as soon as I get back on Friday - driving 380 miles back to IL, spending Saturday getting mail, mowing, laundry, banking, and taking care of her Dad, and then driving back 380 on Sunday.  That one extra day gives us both a nice cushion.  She’s going to stay 2 weeks this time.

I got one of the NEW rooms at the hospitality house this week.  The difference is extreme!  Very nice room with large screen TV (and REMOTE!!) - beds have actual bedspread, and there are some decorations on the walls.  And very importantly, there is a SHOWER in the room.  I told everyone how much I appreciated it and how wonderful it is.  They told me they are working so that all the rooms will be this nice eventually, they’re just slow.

St. John’s Hospital Springfield, MO

Nancy and Stephanie check targets and alignment before being sent through the machine for a scan.  After the scan results are checked by Dr. Kim, the actual radiation begins.  The table rises and the bed is sent into the tube.  There is a loud noise, but no feeling of claustrophobia.  The treatment takes about 20 minutes from start to finish.  Then back to the locker room where I can open my locker and put my own clothes back on.   There are treats like rice krispie treats, cheese and crackers, and oreos, as well as energy drinks, water, coffee, and juices in the waiting room for radiation patients, and I always pick up something on my way out.

Met with Dr. Kim o - She is encouraging me to join a clinical trial program where i would have a 50/50 chance of getting a shot that ‘could’ prevent the recurrence of prostate cancer in the bones.  One group gets calcium supplements, the other group gets supplements AND a shot.   She informed me that the cancer WILL come back, and when it does it will be in my bones.  I thought she was pretty blunt about that, and wondered her motives, was she trying to scare me into the trials?   My wife and I had already decided against it as the patient is responsible for expenses that insurance (medicare) either will or will not pick up. Possible side effects were quite extensive.  We had even thrown the paperwork away.  We told her we would reconsider… she is quite persuasive.
My repeated question to her way - why don’t you just give me the shot?  Why do I have to go through the trial and have a 50/50 chance of getting it?
Her answer “We don’t know if it work or not”
so what - it isn’t going to hurt me - give it to me anyway.
I still dont understand that.
I also found out my cancer is Stage Two.

although delayed on appt Monday - treatments continuing.  Meeting people at the cancer clinic and at the hospital and sharing our stories.  The cancer clinic supplied a discount card for the hospital cafeteria.  Food isn’t very good - but it’s cheap
Feeling a little peaked after wednesday’s treatment.  Stomach is upset and lightheadedness.

After being postponed twice - tomotherapy started on Sept 15.  On Sept 16th, the machine was down.  On Sept 17th - back to treatment.  Met with Doctor and the engineer on the machine to express concern with continuity and effectiveness of treatments.  Left meeting feeling reassured.  Treatmenst on 17th, 18th, & 19th.   Machine was down on 18th and I had regular radiation.
The treatment doesn’t last long at all.  They do a scan first, then show that to the doctor in case there are any adjustments that need to be made.  Tomotherapy is more precisely targeted, they try to not radiate good tissue.  The continuous scanning checks for shrinkage and is adjusted accordingly.  The targets are a real concern - not the implanted ones, the ones they drew on three places.  They’re very faint, but i guess they now what they’re doing.
   Room at hospitality house was pretty bad.  No shower - cockroaches in the bathroom.
Not feeling any side effects aside from urination frequency.  Once an hour!  Got a prescription for FLOMAX, dropped it t WalMart only to find it will cost $240 a MONTH!  Called Dr. Kim and the nurses there called the urologist to see if he had samples (he did). 

The Gleason Score

Prostate cancer is the second most deadly form of cancer in males next to lung cancer. It can strike men in their fifties and may not be detected until it’s too late. A Gleason Score was developed to help evaluate the stages of prostate cancer and to determine prognosis and to guide therapy.

A Gleason Score is given to grade prostate cancer. The scale numbers from 1-5. The Gleason Score numbers from 2-10. The lower the score, the better prognosis, the higher score means the cancer is more aggressive and the prognosis is worse. The Gleason Score was named after Donald F. Gleason, M.D. who was a pathologist at the Minneapolis V.A. Hospital. It was developed in the 1960’s to help determine the level of cancerous cells present after a biopsy.

To determine the grade of prostate cancer a urologist will take a biopsy of prostate tissue through the rectum, it will then be prepared for examination by a pathologist. They will give the biopsy a grade.

Grade 1: cells are close together and resemble normal prostate tissue
Grade 2: cells are larger and have more space between them.
Grade 3: cells are darker but have left the glands and are beginning to surround other tissue.
Grade 4: cells have left the glands but are still recognizable; they are surrounding and invading other tissue.
Grade 5: cells are unrecognizable and have sheets of cancerous cells throughout the surrounding tissue.

A Gleason Score is the combination of two patterns, the cell tissue and the cancerous tissue. The grades are added to the score to determine the proper course of treatment which could range from chemotherapy to surgery. Prostate cancer is metastasizing cells, which means in can invade other parts of the body such as the bladder, bones and rectum.
Early detection is always the key and many men over fifty should get a checkup to determine if any cancerous cells have developed.

Yesterday he had the fiduciaries (sp?) implanted in his prostate.  It was not a pleasant procedure.  Be sure to make sure to check that they’ve lubed up the apparatus before they insert it!  It didn’t really take too long.   He was able to have a nice lunch afterwards and drive home.

There was quite a bit of bleeding - both during and afterwards.  Seems to have stopped today.

Jim is taking Casodex, and large doses of Ibuprofen for some Cipro related pains.   He’s taken one full course of the Casodex, and has had a bit of a rough time of it.   I hate that I can’t be with him all the time, but he is complaining of severe ache in his legs, more frequent urinary urges, and loss of appetite and drive.
There seem to be a few cognitive problems - very subtle nothing major,could just be age related and not related to the meds.   He was very very depressed one morning this week.  Pain and discomfort was a lot, and he hasn’t even started the radiation yet.  He doesn’t like not keeping busy, but the tendinitis and other joint pain keeps him from weed whacking and doing much strenuous activity.   He did drive 2 hours to Springfield yesterday and bought us a kayak.  We have PLANS for after this treatment is over!  Being around other people seems to keep his mind off the pain and discomfort.
  Next step is the marker implantation.  We will stay at the Cancer Society’s Hospitality House the night before as the procedure is early in the day.  It will give us a chance to get a feel for what he’ll need and how he’ll be living 5 days a week.   We have questions for the urologist too.

A neighbor had just had brachytherapy done, and we were hoping that was the option for us.  He highly recommended his radiologist/oncologist in Springfield, MO.  Dr. Helen Kim.  We called and got an appointment with her before we ever heard th diagnosis from the first doctor.  You have to feel comfortable and trust your doctor, and we did not like the impersonal unorganized atmosphere at the urologist’s office.
We made the 2 hour trip to meet with Dr. Helen after faxing up our medical records and preregistering.  We were met by the friendliest people - People wanting to help us - it was wonderful.  We talked with Dr. Helen for over an hour, and her news wasn’t good either.  Jim wasn’t a candidate for brachytherapy, but she said she had something for us.   Their department had just 1 month ago purchased a tomotherapy machine.  I had read about this on the web, and told Jim it sounded great for radiation, but we couldn’t find a place close enough, so it was a true blessing that this had happened.  The way I understand it - the tomotherapy works in conjunction with an image via a computer program and it can pinpoint the area that needs radiation very exactly - minimizing damage to surrounding tissue. 

Then she hit us with the bad news, hormone therapy.  This suppresses the testosterone in a man via a time released capsule that is embedded in his belly and a series of pills.   Well, you do what you have to do.  She told us he could have side affects from this therapy including hot flashes, loss of body muscle, and impotence. She said after 2 years and no more suppression, things could come back to normal.  Her office made a call to a urologist she recommended and we were able to get an appointment that day so we didn’t have to make the long trip again.   Once again, lots of faith and personality with this doctor.  He listened to Jim. 

We, I keep saying we, I mean Jim, I’m just so on this journay with him, at least I’m trying to be as much as I can, so forgive me if I we.

Jim told him about his tendonitis etc probably caused by 8 rounds of CIPRO in the last 2 years, he said “Fine - we’ll put down you’re allergic to CIPRO and you won’t get it again”.  He advised Jim to get the 1 month implant rather than the 4 month to see how he tolerates it.   We scheduled an appointment for in about 18 days later to have markers planted in the prostate to be used during the radiation treatments.   We had a nice supper at Hemingways and jim did some shopping at Bass Pro and we drove home.
Sticker shock the next day when I had the prescription filled - $321 with my discount for the hormone drug (Casodex)- holy moley.   I found a place that will pay for it, so I have to take paperwork with me next time when going for next round.  Wish someone had told me about it before!  I’m going to make sure the Dr. Office has it to give out to other patients.

http://www.needymeds.com/
http://www.astrazeneca-us.com/help-affording-your-medicines/

We’re just waiting until Aug 6 now.  Jim doesn’t seem to be having any bad affects yet from the hormones.

On June 26 we heard the word that literally shook our world.

Jim had been having some urinary problems - and had passed some stones and flakes.  The stones were pretty big, and having had bladder surgery 18 months ago, he was concerned the surgery didn’t work, or that this was something that was going to plague him forever.   He went to his local GP, and had some tests done, including a PSA, because it had been 2 years since his last one.  The nurse called in a few days and told him his PSA had gone from 5.4 to 9.2 in that 2 year period and he should see his urologist.   We still weren’t too worried as he had a biopsy done 2 years ago when he had TUMT performed for an infected prostate and it was clear of cancer.
After a little merry go round with getting a doctor (the previous doctor had retired) - he visited the doctor and had an exam.   Doctor felt a rough spot and put him on CIPRO in preparation for another biopsy.  This time there were to be 15 needles instead of the 4 2 years ago.
His report was not good.  The doctor said it was ‘aggressive prostate cancer” and his Gleason Score was 8.  He told us the treatments, and the pitfalls for all of them and then scheduled Jim for a bone scan, more blood work, and some other imaging.  Then we waited a week to hear the results. 
As far as he could tell, nothing had spread outside the prostate, unless it was microscopic.  Doctor recommended removal of the prostate, and were he to do the surgery he would not spare the nerves.
We knew before we got that report from him we were going to get a second opinion, and we did.

More on that next.