CAT scan results and surgery schedule

Summary (for the busy people): 
CAT scan: negative. 
Surgery: Radical Cystectomy and Neo Bladder reconstruction scheduled for 19 November 2010. 
Post surgery hospital stay: 4-6 days
Recovery: 6-8 weeks.

(Warning: the following may contain TMI for some folks)

CAT Scan results were negative. Which is definitely a positive, good thing! Whew! There is no sign of the tumor coming back or any other lumps or bumps in the organs, fat, muscles, or lymph nodes surrounding the bladder. Surgeon says this is the optimal condition to go ahead with the surgery to remove the bladder. 

The obvious question is; "Why go ahead and take it out if there's no longer any sign of cancer?"

The answer is that there are most likely microscopic cancer cells remaining in the muscle tissue of the bladder wall that may - will probably - start growing again and either produce another tumor in the bladder or metastasize and produce a tumor in the lungs, liver, or some other organ that I can't live without as 'easily' (if at all) as the bladder.

There are basically three surgical options for what to do after removing the bladder (and prostate). These are explained on the WebMD Site [ Click Here ].

I have chosen the Neo-Bladder ( continent reservoir with Orthotopic diversion ) because it doesn't require a stoma ('port' in my side) and, since all the plumbing is reconnected, it should allow the return to the closest thing to 'normal' after surgery. The main down side is the potential for problems with incontinence (leakage) since the sphincter that we normally use to control flow is removed with the bladder. However there is a muscle that we (as adults) normally only use to stop flow that we can train to control flow as well (start doing kegels now). Typically around 10% of men experience 'leakage' during the day and 20% during the night.

Some other possible problems relate to the differences between intestine tissue and bladder tissue for bladder function.

• The bladder has muscles in the walls that are used to squeeze out the urine. Intestines don't so I will need to learn how to relax when peeing while applying manual pressure to my lower abdomen (while sitting). 
• The intestines have a natural population of microorganisms that are not completely removed by antibiotics prior to surgery and cannot be completely removed from the neo-bladder subsequently. This means that any subsequent urine tests will read positive for 'infection'. 
• The intestines produce a mucoid lining that the neo-bladder will continue to produce for some time after surgery. This may block the urethra and cause problems with peeing. They will teach me how to clear this (back-flush the system?). 

This is major surgery that will take 4-5 hours to complete. The incision will be around 4 inches extending below the belly button (so no major muscles will be cut - as they are in hernia operations above the belly button).
During surgery they will remove the bladder and prostate along with some surrounding fat and lymph nodes. He will be very careful to spare the nerves around the prostate that extend down to the penis by not cauterizing excessively in that area. 
they remove a 60 cm. (~2 foot) section of small intestine and form it into a pouch to replace the bladder. He connects the ducts from the kidneys to the top and the urethra (to the penis) to the bottom.
He will create a stoma in my side (temporary) and insert stints into the tubes from the kidneys that pass out the stoma. A catheter will installed from the new bladder through the stoma. A Foley catheter will be also be installed through the penis. These three drainage devices will be removed (in some order that I have forgotten) and the stoma closed during recovery.

Recovery should take 4-6 weeks and during that time I should be able to gradually resume my normal schedule but without any lifting. They will work with me to get used to the operation and maintenance of the new bladder.

Questions:
Debi asked how many of these surgeries Dr. Caropreso has performed. He said about 6 per year.

Why wait so long for surgery? Want to make sure all effects of Chemo have passed and body has rebuilt it's ability to heal. Operating too soon will make the recovery longer.

We scheduled surgery for 5 weeks and 3 days after my last infusion.

Chemo: week 9 - done and moving on to next step.

Tuesday (October 19, 2010): skip the final infusion (pretty much normal), CAT scan, and meet the surgeon instead.

Lowlights:

• Tire easily (no problem driving to Chicago). 
• Still have queasy feeling most of the time. 
• No(?) beers. 
• Monday through Wednesday I have had pretty bad head/neck aches at night. Tylenol helps but not completely (never in the daytime however). I think this is left over from my bike fall last week (maybe because I'd sneaked a beer or two during dinner.)

Highlights:

• A very nice neighbor lady saw my Lost & Found ad in the paper and returned my keys. 
• Great weekend in Chicago spending 'quiet' time with Lance and the Grandkids (pictures follow) and our good friend Emily. 
• Good visit with Surgeon and results of CAT scan were completely negative for any visible signs of cancer. This is what we all expected but we've expected 'good' and gotten 'bad' before. So this was definately good. 
• We now have a date for surgery: November 19, 2010. And we have a pretty good idea how it's going to go and how recovery is going to happen - more later. 

Pictures from Chicago:

Noah helping Grandpa finish sand a butcher block

'Tool man'

I brought an old piece of butcher block for a counter in Lance's kitchen. Noah helped me sand it down to a nice smooth finish. Noah's good with a sander. He was very careful to go back and forth and get all corners and edges.  I took over and did the sides (hard to balance) while Noah worked with some other tools. 

Delaney showing Grandma how to do -- something.

Lance making breakfast (ham?).

A great weekend to just sit around and play and talk. We didn't have to rush anywhere or take anyone to this thing or that. It was very, very nice to have this time with Lance and the kids.

Chemo: week - the last week, I hope -

Looking back on it (briefly) - then forward...


It's been 3 courses of chemo and I had my last infusion this past Tuesday (October 11, 2010). This is grounds for a celebration but I'll put that off until the effects wear off so I can fully enjoy it. The celebration will be short lived - like after winning the play-offs - because I've made it to the World Series and those games(?) remains to be won.

I am tired of feeling the way chemo makes you feel. The oppressive 'warmth' that weighs on you to your core. I seem to have avoided most of the side effects: hair loss, numbness in fingers and toes, further loss of hearing and eyesight, weight loss, nausea (mostly), <the list goes on>, and for that I am extremely grateful. But, none the less, I have come to appreciate the dangers that accompany the injection of these powerfully toxic chemicals into a 'healthy' body and my hands are still sore from the infusions (and leak thereof).

My treatment was designed to run over three cycles; each with three weeks of infusions followed by one week of recovery.  In all three cycles, my body wasn't able to withstand the fury of these poisons and the third infusion had to be dropped for fear that it would weaken me to such an extent that I might contract pneumonia or some other infection that would take weeks or even months to recover from to a point where we could restart our attack on this cancer. So we took one extra week off which didn't bother my Oncologist so it certainly didn't bother me and, as I have documented in this blog, I have made good use of those breaks.

I will be meeting with my surgeon next Tuesday (October 19, 2010) to get a follow-up CAT scan and discuss surgery options.

This week I have been tired. I don't take many nausea pills (as many as I take when I get the platinum chemo) and I don't get the two-day rush that comes from the steroid infusion for nausea. So I slept most of Wednesday.

Thursday I felt good enough for a bike ride and I took a corner too fast and dumped my bike. I'll have sore shoulders and a sore wrist for a while (no scrapes or road rash to heal). Only my pride was injured which is why I got up and left the scene so fast that I didn't notice my keys had fallen out of my pocket. I checked the area on my way home and they had already been picked up. If this weren't enough, my front tire went flat and I had to walk the bike the rest of the way home.

But that was yesterday. Today we're off to Chicago to stay with our son and beautiful (and exceptional) grand kids for the WHOLE WEEKEND. So things are looking up.

Make 'hay' while the sun shines....

Take advantage of a break in chemo. 
Last spring my brother and I cut a couple red oak saw logs from his woods and hauled them to a lumber mill in Frederic. This worked so well that we've been itching all summer to do some more. This break in the chemo, and some beautiful weather, gave us the perfect opportunity. 

Sawing the trees: 

Taking down a tree

We dropped two beautiful red oak trees - infected this year with oak wilt and dieing - and cut two saw logs from each.

Then we cut two Black Cherry that were getting on in years probably past their prime already. After we got them down we discovered that one had begun to hollow in the middle already. Each had two good saw logs and possibly a third. Only a little loss in the middle of the one that will be easy to cut around.

Load up saw logs to remove from forest

Saw logs loaded on the wagon for removal from woods

We set up this old hay wagon to haul the logs out of the woods and back to the farm. I used the Kubota with pallet forks to load these logs. We chained them down to the wagon to keep them from rolling off as we pulled the wagon out of the woods via the 'logging road'. In order to navigate we had the tractor (FWD) pulling the truck which pulled the wagon. We loaded a total of 12 logs on this wagon before we got out of the woods (8 Red Oak and 4 Black Cherry). 

Logs loaded for trip to saw mill

FULL load of saw logs

The old hay wagon didn't look like it would survive the 20 mile trip to the saw mill so we moved 10 of the logs to the truck and trailer. This was probably a bit over-loaded but we took the back roads and didn't go over 20 MPH.

I followed in the car just in case.  

Unloading logs at the mill

Heavy equipment makes quick work.

At the mill each log had to be lifted and a chain put around to drag off the trailer. We were thinking we could have wrapped the logs with a chain before loading but this actually didn't take long at all. 

The logs after cutting into boards

Doesn't look like much but it's still a full load.

Nearly 800 board feet of red oak and black cherry.

This load is only slightly less heavy than the logs but it stacks better.

Stacked and stickered in the shed to begin drying.

Red Oak and Black Cherry stacked to dry.

We would have preferred to let this dry up a little before stickering but we don't have the luxury of time during this on this trip. The weather will be cold enough now that there shouldn't be a problem with fungus developing along the sticker pieces.

Not a bad way to spend some time off...

Break in the action - again ( time to reflect?.)

Deja vu all over again
Last week I was sent home again without getting my third infusion of the second round. Same story as with the first round; my platelet count had dropped too far to risk a third infusion of the cycle. 

After the first break my counts had rebounded to a level well above where they were before starting chemo. But even after reducing the dosage for the second round they have dropped even further than before at this stage of my cycle.

So I get another two-week break. I don't mind this because this round has been harder than the first. Not so much that the effects were any worse, it was more that they didn't get better like they did the first round.


Comparing the first and second rounds
Round 1:
Infusion 1: Carboplaten 752 mg. and Gemcitabine 2100 mg.
Infusion 2: Gemcitabine 2100 mg.
Infusion 3: Canceled - low platelets.
Round 2:
Infusion 1: Carboplaten 752 mg. and Gemcitabine 1680 mg.
Infusion 2: Gemcitabine 1680 mg.
Infusion 3: Canceled - low platelets.


The first round seemed more intense. Maybe only because I didn't know what to expect. I had a rush of energy after the first infusion. This energy lasted two days ('we' count days including the day of infusion) which was probably due to the steroids. On Wednesday I crashed and took a long nap (longer than normal) to get through the day. Then I settled into a sort of general crappy feeling for the rest of the week and through the weekend. The following Monday I felt great - back to normal. Ready for the second infusion - this time just Gemzar.

After the infusion of Gemzar I was very tired and I had a weird panic attack. I felt bad crappy for a couple days but after that I felt pretty good for the remainder of the week. We travelled north for the weekend to meet some relatives who were visiting from Arizona. When I went in for the third infusion they told me my counts were too low and we'd take two weeks off instead of one before starting the next round.

The second round started with that pain during infusion due to the leakage from the I-V. The first week went about the same except I didn't feel great on the following Monday. The general crappy feeling extended through the second infusion and lasted the whole second week. I was just starting to come out of it when I went for my third treatment and they told me my counts were too low again and I could go home.

It's always hard to get through this break because I start having doubts. I wonder about the decision I made to take the neo-adjunct chemo instead of having the surgery right away (get it out of there). I wonder about aches and pains in my back (are they signs that I'm having kidney problems - spread of the cancer or side effects of the chemo?).

Debi saves me by offering reassurances; "Keith Richard's wife went through the exact same thing and she is just fine after two years." And she was quick to point out; "Your sore back is from bouncing around on a tractor for three days while working in the woods."

Okay, now I'm ready for the third round. Maybe I'll do better. This will be the last chemo before surgery. Bring it on ....

Please don't practice on me - the concequences of a leaky IV.

Dr. Oncologist mused as he examined the back of my red and swollen left hand; "Well, it's apparent that the I-V leaked during the chemo infusion." He looked up at me and smiled; "But, this doesn't look that serious." He added; "We see this occasionally but it rarely causes serious problems any more." He felt my hand and arm and said; "This used to be quite common and it wasn't unusual to have it cause open lesions that required skin grafts in order to heal - but I haven't seen that in at least a decade (or two)."

Remember my last full infusion (Sept 7) I had the young chemo nurse who had so much trouble inserting my IV. A week and a half had passed and while watching my team bowl ( I asked my son to bowl for me since I wasn't feeling that strong) , and as I applauded, I noticed my left hand begin to hurt. As the night progressed, the swelling became more pronounced and it began to get warm to the touch. I stopped clapping and when I got home I sent a message (via MyChart web software) to Dr. Oncologist.  The next morning I got a call from Chemo Nurse and we scheduled an appointment that afternoon to have a look.

Dr. Oncologist said I was lucky I didn't have a hole in my hand. He surmised that the IV had leaked and some of the chemo had gotten into the tissue of my hand (or into the walls of the vein). He reminded me that these chemicals are 'nasty things' and when they 'get out' of where they should be they can cause trouble. By then my hand was no longer hot and the swelling had gone down. He checked me for soreness and decided I was out of danger for ulcers or other permanent damage. They wouldn't be able to use that hand again for infusions (or any IV probably). The subject of a 'port' came up again - or at least a mini-port in my upper arm just to get through the remaining infusions.

I am soaking this hand in hot water at least twice a day and after a month I still have a small lump on the back of my hand. Dr. Oncologist recommended I flex the hand and stretch the wrist to work out any scar tissue from the damaged tissue. When I work the hand (and my ring finger) still get 'angry'. A soaking makes it better and I do think it's finally healing.

I guess the take home message from this is that when the nurse asks me if I'd like someone else to try inserting the I-V, I should say "YES".