Tuesday, November 30, 2010

What a week (pt 2): Wake up.

I just want to say that I don't think anyone really doubts they will wake up after surgery (this day and age) and I have no doubt at all that everything will go completely as planned.  But the statistics are there and I do occasionally buy a lottery ticket, after all. So I must believe in the long shot.

And then I was awake and in a different room. I looked at the clock on the wall and it was 1:15 PM. The surgery had taken five hours. GOOD. I breathed a sigh of relief.

Good, because the long surgery meant I most probably had been given a Neo-bladder. A short surgery would mean there were problems with my internal plumbing that wouldn't allow the neo-bladder to work and I would be left with the 'simple' option of an Ostomy and an external bag for the rest of my life. So 5 hours was very good news.

I was awake and I don't remember waking up or anything else other than being awake and answering questions about this or that. The nurse was discribing all the new tubing I had been given while I was asleep. They described the morphine drip and showed me how to use the button.  I really don't remember much else. I kept looking at the clock. They said I'd be here for about an hour and then move to my room. I was anxious to see Debi. I knew she'd be worried.

It was two hours and then three hours and they were telling me that they had to wait for a room to be made ready. Debi would be frantic. Finally around 4:00 they wheeled me to the recovery wing. I got to the room and Debi, Mary and Jackie were cheering me home. Mary and Jackie - Debi's sisters - had driven 5 hours on Thursday to be here and what a great feeling to be greeted so.

I'm a little silly still from the anesthesia (and maybe the button) but I don't remember much except being silly. I remember wanting to get up and walk a little. The bed was uncomfortable on my back and I was already bored with laying down. The nursesaid it was alright to get up if I could so she took off my leg pumps, eased my legs onto the floor, and helped me stand. Debi helped me navigate to the door and out into the hallway. A few steps up the hall were all I wanted to tackle so we headed back to the bed.

I was on a no food no drink restriction but I wasn't thirsty or hungry so that didn't bother me. I was getting all the water I needed from the I-V along with sucrose for energy. They didn't replace the oxygen after the walk since my levels tested fine.

As Mary and Jackie were getting ready to head out for our house I asked Debi to stay with me for the night. It was selfish, I know, but she didn't seem to mind and I was a lot more comfortable knowing she was there. They moved a fold away bed into the room and that pretty much filled the space (everyone has private rooms nowadays.)

About 11PM, Debi helped me get out of bed again and we walked almost all the way down to the nurses station (my room was at the end of the hall). It felt good to be moving around and especially good to get off my back.

I think I slept well that first night. The nurse woke me for vitals a couple times but it didn't bother me at all. I remember thinking how slowly time was moving. It seemed like every time I looked at the clock only a few minutes had passed. Maybe I wasn't sleeping as well as I thought - or it was the effect of the Morphine.

Then there was the shift change. It's funny how quickly you become attached to your nurses. I think; "How can anyone be as good as Karen?" but pretty soon I realize that Lori is pretty great, too. We start asking each nurse and CNA how far they drove to work and were amazed at the commute they made each day. Just one more indication of the dedication of these women and men.  More about this later.

What a week (pt 1).

It's been 11 days since surgery, actually, and I could have written a book about all the details with all the ups and downs (maybe I will). I didn't blog and barely kept up with email over the time I was in the hospital because the Internet connection was limited (that's my story and I'm sticking to it). And, frankly, I was just too busy getting myself well enough to leave. So at this point I would simply like to think back, consulting my notes, and touch on the highlights.

Preparing to go under: Anesthesiology is always the scariest part of surgery to me. I don't like being out of control. What if something happens and they can't wake me up? So I decided to condition myself to help me wake up when the time came; like a distance runner builds up carbs and liquids in the body before the race to carry them through any difficulties.

The night before I began envisioning all the reasons I had to wake up.
  • I pictured my wife, Debi and how much we need each other; all the plans we have that are waiting and all the dreams we have as yet unrealized. 
  • I thought of my kids and all the things I have yet to do for them, or teach them, or show them. Since they are grown, it is probably a matter of how much they can teach me - but learning these things is very important to me. 
  • I felt the hugs of my grand kids and replayed in my mind the sparkle in their eyes and the sound of their laughter. I need to be here to be their friend and confidant. And to take my turn reading to them at night and singing their three songs before they go to sleep. I don't sing as well as their parents but they don't seem to mind. (The last time I sang to my granddaughter, as I was leaving her bedroom, she said to me; "Thank you grandpa")
  • I recounted the thoughts, wishes, and prayers that I have received from family, friends - old and new - who have reached out to me with advice, assurances, heart-felt support. 
  • And finally I thought of all the things I have yet to do in life - many of which I don't even know about yet. 

Debi and I asked the anesthesiologist if he'd gotten a good nights' sleep. We asked the surgeon if he was feeling good and psyched for this surgery. All resounding "yes's".

The last thing I remember was how perky everyone was in the OR. Past surgeries I remember feeling like the room was empty except for me and the anesthesiologist. Here everyone was talking to me and laughing with me - they'd had their morning coffee and were raring to go. I barely had time to say my little prayer; "Now I lay me down to sleep and pray the Lord my soul ....."

Post surgery appointment (10 days). Pulling staples and stints.

Ten days after surgery and 3 days after going home I met again with my surgeon.

  • remove staples and apply steri-strips.
  • remove stints that have been draining kidneys since surgery. 
  • check progress.
  • talk about the surgery.
During the surgery they place stints in the ureters that lead from each kidney and are attached to the new bladder (neo-bladder). They run these through the neo-bladder and out the stoma to drain into that bag. They're about the size of the stir straws in mixed drinks (only flexible). Surgeon pulled these out (a little tug feeling) and now the kidneys will drain directly into the neo-bladder for the first time.

The nurse removed the staples and placed steri-strips across any holes remaining. For the most part this didn't hurt at all. It stung on a couple but no more than a large mosquito. She said the area's still a little numb from the surgery - which helps. There were 16 total.

Surgeon is young who obviously loves his work and takes great pride in it. He has a great smile and bedside maner. He was ebulant about my particular surgery. He said everything went great and there were no surprises or problems. He gave me a print out of the pathology report that, I am very pleased to say, completely validated the diagnosis of the urology and onocology team at Dean/St. Mary's.  And he noted that in my case he was able to clearly see the nerves that went around the (removed) bladder and prostate that lead to my penis which control erections. He said this allowed him to spare these so I would still be able to have erections (once catheter is removed) and enjoy sex. We'll see how that goes.

Wednesday, November 24, 2010

Irrigation 101.

Convincing a piece of intestine that it's no longer intestinal.

Flushing out the mucous:

Monday following surgery (day +3) at 7:00 AM the resident doctor came to check me over as usual. But this time, after checking my stitches and listening to my lungs and stomach, he spread out a pad on my bed on which he unpacked a irrigation kit. It consists of one tray (size of a bread pan), a huge syringe (size of a push-up pop), a bottle of saline solution (0.09%) and a clamp (hemostat). At this point I still had one of those big collection bags connected to each of my catheters. So the idea here is two fold:
  1. Flush the Neo bladder of any mucous the intestinal tissue is still producing (2 feet of the small intestine was used to make it - remember).
  2. Start introducing liquid into this new pouch to introduce it to it's new function. All urine is currently passing directly out of my body via those kidney stints. The new bladder is just sitting there empty so all of the 'origami' can heal.
  3. Check  the connection between the chamber where the Foley catheter goes and the chamber where the Supra Pelvic Catheter (SPC) goes. 
Irrigation procedure:

  1. Pull back covers to expose all the tubing and the body areas where they enter (remember this for later). 
  2. Place pads under tubing to catch any leakage. 
  3. Clamp off catheter tube coming out of penis (either catheter can be chosen to clamp first). 
  4. Disconnect tubing going to collection bag. 
  5. Open ostomy collection collection bag at the collar (like a zip lock). 
  6. Carefully slide bag away from body enough to retrieve catheter tube (take care not to pull the stints.)
  7. Fill syringe with about 20 ccs of saline (about half full). 
  8. Attach syringe to tube that was removed from ostomy bag. 
  9. Inject saline into tube. 
  10. Now try to withdraw whatever liquid will come out by pulling (carefully) on the syringe plunger. ( you should get saline along with lots of mucus - sometimes you do and sometimes you get nothing)
  11. Repeat step #7 - #10 at least two more times. 
  12. When you've gotten all you can get it's time to switch ends and repeat the process on the foley catheter. Move clamp from Foley tube to ostomy tube and infuse and withdraw saline 2 or three times. 
  13. Finally unclamp the ostomy tube and replace in collection pouch. 
  14. Infuse 20 more cc's of saline into the foley tube and verify that it comes out the foley tube. Thus verifying the bladder is still open from one end to another. 
Class discussion: 

Tuesday night and Wednesday morning (day 5) had been an awful time for me. I had only slept about an hour all night and I was tired and depressed (at not being able to sleep mostly).  I was just dozing off after morning 'rounds' when Dr. Moore walked in with his irrigation equipment. He asked me if I minded if he demonstrated the technique to a few of the staff. I said 'no' and he beckoned in about a dozen nurses who gathered around my bed. Of course this perked me right up - always the ham - suddenly I had an audience. My modesty quickly passed (remember #1 above) as I watched their faces and helped out with the demonstration wherever I could ( I was begining to feel like an expert, myself, by now).

It only takes about ten minutes and everyone was gone again leaving my wife and I to laugh and say; "what was that?".  I must have been a good test subject (dummy) because when Dr. Moore came for the evening irrigation (two-a-day) he had another dozen or so nurses from the next shift.

I learned that since my particular surgery is only performed a few times a year at St. Mary's, much of the post surgical care that is unique to this surgery has been left to the resident doctor. There is a feeling by the doctors that this is more of a nursing thing and they are attempting to shift some of the tasks to the nursing staff. Hence the demonstration.

This was just one more incident that supported the feeling that I was a special patient in the ward. I have no doubt that all patients are made to feel special in the surgery recovery ward at St. Mary's but I felt like I was a little bit more...

Friday, November 19, 2010

Here we go.

5:15 AM sounds early to be walking through the hospital doors but I'm usually up and about by now anyway and I think Debi is too nervous to sleep - she was up before me. Since I can't have any food or drink it's just as well to get started early. Debi's sisters drove down yesterday and they will join her at the hospital later in the morning to help her with the waiting.

We sit in a very nice prep room and host a parade of professionals as they each apply their magic - after I strip down and put on hospital gown ("the last suit you will ever wear").
  • Wrist band ID (now I can go on all the rides). 
  • Wrist band blood type match - just in case. 
  • Vital signs. 
  • Sign consent forms.  
  • anti-nausea pill. 
  • Blood draw for lab. 
  • Shave (you know where).
  • Wait
  • Meet with the Ostomy Nurse - to mark where the hole will be in my belly (for tubes, etc). This should be temporary unless there is reason to abort the neo-bladder and go with a permanent  Urostomy (ugh).
  • Meet with the anesthetist. 
  • Wait
  • Meet with the surgeon (he's bright eyed and bushy tailed - had a good night's sleep and is ready to go.)
  • Wait. 
  • Debi packs up all my stuff (clothes, cell phone, ipod, and glasses - I won't need to see). 
Finally, it's nearly 8 o'clock and the crew is there to roll me down to the OR. I lay back and they cover me with a hi-tech sheet that is mylar-like on one side and black on the other. (They suggest I save this for the car - great emergency blanket in the winter.) They a hair-net style hat made of the same stuff on my head. This is very warm - nice - the O.R. is cold.

A hug and a kiss from Debi and away I go ....

Thursday, November 18, 2010

It's down to hours.

Bowel Prep under way....
T minus 11 hours and every thing's been go (literally) for a couple hours. It's all clear now and ready for launch (or lunch - but that will have to wait). I was a little nervous because half way through that 4 liters of stuff I threw up (seemed like a lot). I was pumping it in too fast, I guess - maybe 10 oz every 10 minutes. I backed off on the rate and the rest stayed down just fine.

Now I'm watching Charley Browne Thanksgiving and taking the massive doses of antibiotic to really clean the pipes.  I'm feeling pretty good. I've been cold all afternoon but I put another log in the stove now and I'm toasty warm.

The hospital called a couple hours ago and said I was first on the surgeon's schedule so I need to be at the hospital at 5:15 for surgery at 8:00. The nurse said I could stay on clear liquids until midnight but nothing (not even water) after that.

My regular doctor called this afternoon to see if I was okay (pretty nice huh). She suggested sucking on lime before and after each glass of that golytely. That helped a lot because when I had my colonoscopy a few years ago I couldn't finish the bottle and they had to give me an enema or two when I got to the hospital. We chatted for quite a while and she assured me that I was very lucky to have this surgeon as he is very good. She eased my mind and now I'm ready for the show.

I'm getting so much support from family and friends that it's hard to get down in spirits.  It's a great feeling - this outpouring of thoughts, prayers, and love. Thank you all!

Day before surgery - thoughts (panic?)

Thursday, 18 November 2010 (t minus 1):

No solid food from breakfast on - only clear liquids. I had a couple bites of banana at 3AM when I couldn't sleep - that's before breakfast, right? It will all come out when I start drinking that stuff.

2:00 PM beginning drinking Golytely. UGHH I hate that stuff. Drink 8 oz. every 10 minutes until gone (2 - 2.5 hours).

7 PM take Metronidazole and Neomycin dose
8 PM take another dose of the above.
11 PM take final dose of above antibiotics. This is meant to kill off as much of the intestinal flora as possible to minimize infection when part of the bowel is removed.

Yesterday I got an email from my surgeon:
  • Just wanted to let you know that Friday an ostomy nurse will be stopping by in the pre-op area to mark your skin. We are still planning on the neobladder, but I think we talked about this, under rare circumstances, the bowel won't reach down to the urethra and the neobladder surgery won't work. In that case, we default to the ostomy surgery and will use the pre-marked ostomy site provided by the nurse.
Now I am concerned. Much of my thought over the past few months has been weighing the risks of cancer coming back versus the quality of life after the treatment/surgery. I have rationalized the neo-bladder in this equation but have not rationalized the bag.

I remember discussion of the possibility that the cancer has moved down into the urethra to the extent that we cannot use it to drain the neo-bladder or that more has to be removed in order to keep it from being a potential source of cancer back into the neo-bladder.

My question this morning is about timing. My understanding is that the decision to remove urethra will be based on some real-time lab analysis of the tissue during the surgery. Is this done before the bladder is removed? If the neo-bladder won't work can we leave things alone and go back to chemo/radiation?

I understand that if cancer cells are found in urethra it means it has metastasized and all bets are off anyway. T think I've answered my own question but I'd like to hear it from the surgeon so I sent him all this in a reply to his email.

I will, of course, deal with whatever I am given after the surgery. I have to trust the surgeon's discretion to make the right choices once he is in there and he can see what the situation really is. As much as medicine has advanced -- to be able to do things like neo-bladders -- the standard of treatment for cancer is still to remove as much of it as possible and deal with whatever we have remaining.

Earlier Doubts:
Earlier in the week Debi and I were stressing about why we needed to go through with this surgery at all when we have survived chemo and all tests (CT Scan, blood tests, urology) are negative. Why not wait and see if it comes back? We know that these tests are only for active tumors and don't see activity of individual cells. Once the cancer has made it into the muscle tissue the cells are 'available' to the blood circulation system and if they move into the blood they can move anywhere in the body (metastasize).
But, given this, why not even go back in the bladder (with the cytoscope) and see if their is any visible sign of the original tumor. Why not biopsy some of the muscle tissue to see if cells are still there.

The question, of course, is: What if both these tests are negative too?
The answer is: Nothing changes. The tests may not be sensitive enough and the risk of leaving the bladder is too great for the return or spread of the cancer. The Standard of Treatment has not changed and the Neo Adjuvant chemo and all the subsequent tests are simply a part of this overall treatment strategy.

So, I'm having my morning coffee (and grateful to be allowed that) and I will not eat all day. I will psych myself for drinking that awful stuff and a long night of uneasiness (terror?). I have a couple books to read ( "Aragon" and "Street Lawyer" - John Grisham) and I can work on updating my web sites (this keeps my mind busy). And there are always more things to do around the house (put on storm windows, bring in more wood, etc.)

Monday, November 15, 2010

Last week before surgery.

November 14: Down to the wire...

I've spent the past 4 weeks trying to get back into shape and recover from the effects of Chemo. I have been riding bike to campus (4 miles one way) at least 3 times per week. I've spent some time at the farm working on pruning the trees and removing some saw logs for lumber. I've been building stools and stands from this lumber and working around the yard and garage, cleaning up and preparing for winter.

I haven't been blogging because (I think) I am feeling good about this surgery and I don't want to dwell on it too much for fear it might start scaring me. I mainly want to get it over with so I can put it past me and move on. I'll deal with whatever I need to deal with but the not knowing (even with all the information you still don't really know).

I still wish there were some other way - but I am convinced this way is the best treatment available (this I believe).

I have been working with The Center for Patient Partnerships at the UW-Madison. They provide patient advocacy services.  This has helped to the extent it is someone to talk to who has worked with patients before me and they have access to information that I may not.  They have suggested that I contact some of this doctor's former patients if I have questions about the procedure and the recovery. I expressed interest in the different options and how previous patients of each felt about their choices. After thinking about this I couldn't imagine how anything they might say would cause me to change my mind about my choice so I haven't followed up on this.

Aches and pains: 
I still feel well. I have aches and pains but these are not that unusual. My lower back hurts - I have a crick in my hip area so that when I move a certain way I get a 'shock' along the top of my hip bone (crest of the ilium). Of course every pain I get 'means' something now.  My lower abdomen feels funny and may be related to my bladder. There is some pain in the area but it's hard to tell if it's intestinal (the cabbage I ate last night). My shoulder still aches from falling on my bike and I attribute my hip soreness to this as well.  I had my pre-op physical and passed with flying colors. My doctor agrees with everything I'm doing and tells me this surgeon is very good (would she say that about anyone at this point?) but he looks like he's about 12. We agreed that everyone looks that way to us now days. LOL

That's enough of this. ..