Monday, December 20, 2010

Christmas letter 2010

In the spring of 2010, Debi and Stuart drove to Kansas City (in a blizzard) to see Lance in “Around the World in 80 Days”. The snow was so bad we finally pulled over and spent the night in Iowa. The show was worth the trip.

Jordan is doing free-lance programming, umpiring baseball, filling out job applications, and applying again to teach in Japan in the fall.

Click on image to enlarge

Click on image to enlarge
Stuart had umpired over 100 games when his season was cut short in July by a diagnosis of Cancer. He was heard to say; “Baseball probably saved my life because it was only after a strenuous game that there was blood in my urine.” This led to a diagnosis of bladder cancer followed by surgery to remove most of the tumor. In November, after three months of chemo, they removed his bladder (which contained  the remaining cancer) and constructed a new (Neo-Bladder) from 2 feet of his small intestine.  Now it’s a matter of learning how to use this new bladder. So far everything is going very well.

Click on image to enlarge
Lance and his lovely children; Noah (4) and Delaney (2) have brought us so much joy over the year and we treasure every minute we get to spend with them. They all came up from Chicago to visit us in the hospital and greatly helped Stuart begin to heal. Lance and Delaney were in a Wal-Mart commercial last spring and Lance is in an AT&T commercial this winter - which helps pay the rent.

Click on image to enlarge
Even thought the cancer has consumed most of our thoughts and energy lately, we feel like it’s ending up to be another great year in our lives together. We are blessed with so many good friends and loving relatives who have prayed for us and supported us through this whole thing. With this support and the wonders of modern medicine the cancer has been removed and we will survive and prosper in the new year.

We wish you peaceful holiday season and much happiness in the coming new year.

Sunday, December 12, 2010

How it works

First week of actually using the Neo-Bladder

That's me - supervising
Last Sunday we ventured out for our holiday tradition of finding and cutting a fresh tree at the The Tree Farm near Cross Plains, WI. This is about a half hour drive out into the country (for us) and usually at least a half hour tracking through the snow before we find and cut the perfect tree. We had a leisurely drive back home followed by diner at a local restaurant to celebrate.

At this point I was still wearing both catheters and the collection bags.  I really couldn't wait to get rid of them. What I failed to realize was the fact that these collection bags are MUCH larger than the neo-bladder. And after loosing the bags (the following day) the amount of time I could be away from a bathroom had been drastically reduced.

Limited range:

So, three weeks after surgery (Monday, 6 December 2010) I am finally using the neo-bladder. I can do pretty much anything I ever could except now I have to stop every hour or so and pee. I am assured that this will improve as the new bladder stretches and I develop muscles, I haven't used for a while, to gain better control. After a few days of working with this thing I am mainly sore.  

Like a baby: 
After removing the catheter (Foley), the doctor sent me home with a list of instructions and a male maxi-pad. I had no idea what to expect but he assured me that I would have little, if any, control to start with. And he was right. I am still in awe at what I have going on inside of me and I can't wait to get started at figuring this thing out.

So, it's back to basics. How do I know when I need to pee? I feel a little leak (this new bladder has no nerves to tell me when it's full). So when I feel a little leak, I run to the bathroom, sit down, lean forward and relax. Some pee runs out (there are no muscles in this new bladder help this drainage). So I try some of the other abdominal muscles and find a way to push some more out - a little bit at a time. The doctor also showed me how to push on my stomach with the ball of my hand, starting at my belly button and sliding down to my pelvis. Of course this is right over my stitches (healed now but still a little sensitive to this sort of thing). So after a minute or so of this, nothing more seems to be coming out. Before getting up the doctor wants me to unplug the SPC (Supra-Pelvic-Catheter) and measure how much - if any - runs out. This is a test for how well I did at evacuating the neo-bladder. He's hoping for less than 100 cc's. I am far below that (maybe 10 cc's ) so I've done well.

Now I go about my business and wait for another 'sign'. It takes about an hour (a little longer if I'm sitting down) and then back to the bathroom for another round. I don't have much control over stopping these leaks but I seem to be able to control the flow to the point where it doesn't start running out until I sit on the toilet and consciously relax. I believe this control comes from the muscles I have been building up with the kegels (which I am now doing in ernest).

After the first full day of this hourly exercise, I am pretty tired of it all and my muscles, and stitches, are pretty sore. Thank goodness for the SPC that I can connect to the bag and let that collect the pee for the night. I get no leakage during the night - as long as that catheter doesn't plug.

The second day goes better and it seems like it is taking more like 2 hours between leaks (average 1.5 hrs. ). It also seems like I'm going more so I'm thinking the new bladder is beginning to stretch a little. My muscles down there are still stiff and sore so I lighten up a little on the kegels.

At the end of the first week I'm still at around 2 hours but I'm getting a little better at holding and at releasing. I'm still very grateful for the night reprieve (the 'overnight bag') and the maxi-pads stay pretty much dry during the day.

Saturday morning, Jordan and I went to see "Harry Potter; The Deathly Hallows Part I" and I almost made it through the whole movie (would have if they hadn't shown 20 minutes of trailers). Then Debi and I went to the neighbors holiday party and I had a couple tasty beers. So I'm getting used to going out and gaining more confidence in my ability to control this new stuff.

Next challenge will be removing the SPC and having to make it through the night. Do I see Depends in my future?





Monday, December 6, 2010

Second post-surgery office visit. No more "baggage" (except for one small overnight bag).

Two weeks (plus) since discharge from hospital and we're taking a huge step back towards "normal". 
  • Remove Foley catheter (penis). 
  • Remove Ostomy bag and barrier that has been used to collect from the stints and the suprapubic catheter.
  • Leave SupraPubic catheter in place. 
  • Instruct on use and care of neo-bladder and remaining equipment. 
 This is the office visit I've been anticipating for two reasons: 
  1. Since last Friday my Foley catheter has been leaking. 
  2. The bags will no longer be needed (for the most part) & I hate those bags. 
  3. (3?) Let's get on with this - I'm curious how it will all work. 
Restructuring the plumbing (closer to final configuration): 
The Foley catheter came out first (the one up my penis). This is painless once they deflate the balloon that holds it in place. It's kind of like "whoops, there it is".  Whew! From now on all the urine that is collecting in my neo-bladder will come out through my penis - hopefully under some kind of control by me.  The first thing I get introduced to is a male maxi-pad. There WILL be leakage. 


suprapubic catheter in urostomy bag
Next to go is the Urostomy pouch and the sticky disk that held it on (barrier disk) to my belly. That sticky pad really sticks (when you don't want it to). 

The catheter (suprapubic catheter) remains but it is fitted with a plug. So now I have a tube coming out of my belly. I'll get to the reason for keeping this later. I am given a dressing patch that is form fit to cover the hole and protect my clothes from seepage (a weeks worth of these patches).

My assignment for the week is to get used to the muscles and techniques needed to empty this neo-bladder. It doesn't have any muscles in the walls - like the old bladder - to squeeze the urine out of the 'balloon'. I will now have to use abdominal muscles, hand pressure to my lower abdomen, and relaxation techniques to force the urine out of this new bladder. We'll see how that goes....

Also missing is the constricting muscles that were in the prostate (also removed) which effectively shut down any leakage. Both these muscle systems were involuntary (to the extent that I didn't have to consciously contract or release either). I will now have to exercise the muscles in the floor of my abdomen through - which the urethra passes - to build up the muscle tone that will pinch off the urethra and stop leakage. This exercise is called a kegel. [ What are kegel's? ]

Suprapubic catheter (SPC):  [what's a suprapubic catheter?]
SPC  after removal of ostomy bag
What I have here isn't exactly an SPC as defined in the above link. Before the surgery I was measured for an ostomy and the location marked on my stomach where an ostomy would be located if, during surgery, it was determined that they couldn't give me a neo-bladder (for whatever reason).  During the first week after the surgery they needed an external reservoir to collect urine from the stints coming from the kidneys - before the neo-bladder was sufficiently healed and ready to function. For this I needed an Ostomy pouch which was installed in the ostomy location (logically enough). Since they already had a hole, they may as well use it for the SPC (dual purpose). When after two weeks, the ostomy pouch was no longer needed it was removed leaving the SPC. 

For the next week I will be using the SPC for two things: 
  1. After doing my best empty my new bladder I unplug the SPC and measure how much runs out. This tests how well I am doing at peeing.  If it's less than 100cc I am doing good. 
  2. Night relief: at night I can unplug the SPC and connect it to a bag (overnight bag). This allows me to sleep thorough the night without having to get up every hour or so to pee.
So armed with all this information; psyched by our enthusiastic doctor; stripped of tubes and bags we ride off into the midday (stopping at our favorite restaurant for a late breakfast) to try out all these new ideas. 

Stay tuned....

Saturday, December 4, 2010

surgery plus two weeks

Two weeks ago yesterday they removed my bladder and made me a new one (Neo-bladder).

Tubes and "Baggage":
I've been home for a week and the only problem I am having is dealing with the two tubes that are still coming out of my body. This adds a bit of housekeeping but it's not bad because I know they will BOTH go away over the next couple weeks.

This morning I woke up and the sticky disk that holds the ostomy bag to my belly had pulled off 1/2 way. Of course this meant a leak and there was a wet spot on my cloths (pee). Not too wet but not a pleasant feeling just the same.  I had just replaced this "appliance" yesterday and I must have done something wrong in the process. Anyway, I proceeded to clean myself up and attach a new one - properly this time, I hope. I've only done this a few times so I'm still learning. This is a link to the product that I am using. There are two parts: the skin barrier and the pouch - that snap together.

This hole in my belly - and the ostomy - is only temporary and is used to bring a secondary catheter out from my neo-bladder. (This was also the collection bag for the stints that led directly from my kidney ducts (ureters) after surgery.) These stints were removed last Monday (along with the staples) and now the new bladder is collecting the urine. Most of which is still passing out through this secondary catheter.

This coming Monday the Foley catheter will be removed and this secondary catheter will be plugged - during the day - so I can begin learning how to pee normally ("neo-normally"). And so I can get used to how it feels to HAVE to pee. At night the plug will be removed from this secondary catheter (and bag connected) so I don't have to get up every couple hours.
 
Up and around: 
I am not having any problems getting around - only a little pain if I move wrong. I am prohibited from heavy lifting but that's about it. I have been walking around the block (4-block square) every day and that seems to loosen everything up. Yesterday I substituted cleaning up the driveway and deck in prep for the snowstorm we had last night. Jordan (son) has taken over hauling firewood from the back yard to the back door.

Eating and such: 
My bowels have not recovered yet so it's pretty much diarrhea and gas - with the cramping that goes with it (but that's my only pain anymore). This is getting a little old but it's better than the first four days when nothing was working. I'm eating normally now but just not so much. 

We got a new layer of snow last night; the first of the season.  Jordan cleared off the driveway, sidewalks, and deck. That's nice.


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.
Stints: 
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.

Staples:
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.

Report: 
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.

DOUBTS?
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. ..




Tuesday, October 19, 2010

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.

Friday, October 15, 2010

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.


Friday, October 8, 2010

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...


Tuesday, October 5, 2010

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 ....

Sunday, October 3, 2010

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".


Tuesday, September 14, 2010

Chemo: week 6 - blood counts.

Lab test results so far in chemo treatments.
August 10 - Blood tests before first Chemo infusion - Carboplatin & Gemzar
August 17 - Blood test before second chemo infusion - Gemzar alone.
August 24 - Blood test before third chemo - counts had dropped too low so no infusion of Gemzar.
August 31 - No blood test this week - week off to recover strength.
September 7 - Blood test before first chemo of second round - carbo & gem
September 14 - Blood test before Gemzar.


The second round of infusions are at a lower dose of Gemzar to reduce depression of blood counts enough to allow us to safely administer the third dose.

Monday, September 13, 2010

chemo: week 6 - Is it routine yet?

Today is Monday, the last day of the fifth week. This completes the week of the first treatment that I've had before - again. (what?) Anyway, I now can compare the progression of symptoms over two replicate weeks to see if there is any change that may be caused either by environmental effects or some additive effect of the drugs (or change - strengthening or weakinging - in how my system tolerates them).

Looking back on the first week (first chemo) by this time - 7 days into the dose - I was feeling great again. That Monday I was no longer feeling queasy or 'hot in my core'. Now, today, I feel okay but I'm not feeling great. I have that yucky feeling still but it's just not as bad as it's been all week (since Thursday, anyway). Other than that the week has been pretty much the same.

Except for my hand - where the IV was put in. That is sore and swollen. My ring finger is red and swollen and I've taken my wedding ring off (while I could). I have no grip with that hand and if I forget and try to grab something I get a shooting pain. After the first couple days of cold packs I am now soaking it in hot water a couple times a day. It has been getting better all week. The redness is gone and the swelling and soreness is going down. My grip is improving - I forgot while pulling weeds in the garden and it reminded me, however.

I've survived the second dose of Carboplatin and Gemzar. Tomorrow just the Gemzar.

Sunday, September 12, 2010

chemo: week 5 - it's back and the novelty is gone.

Week 5 began Tuesday morning at the clinic with a New Nurse. She was very young and seemed a little uneasy with the idea of sticking me with the IV needle. She tried my right hand first (I suggested a switch from the past two weeks in my left). She said I had 'rolling veins' but she should be able to get it. (This is the first I've heard of 'rolling veins'.) She tried once and got it - but it got away (or something like that). She asked if I'd like someone else to try it - this time on the left hand - and I said; "No, give it another try." (while she was working on my right hand, Chemo Nurse walked by and mouthed; "every one's veins roll"). New Nurse got it this time and it seemed like everything was going well.

About half way through the steroid infusion (second anti-nausea bag) my arm and hand started hurting. It helped to raise it up so New Nurse brought me a second pillow for support. She said the steroid rarely hurts - the Gemze is more likely to hurt. (that's the next bag). 

Between bags, Chemo Nurse stopped by to check the needle placement and said it was in the vein and working properly - something about back-flow. Sure enough the Gemzee did hurt so they slowed the pump which helped. The Carboplatin wasn't supposed to hurt - and it didn't - but they kept the pump slowed just in case. This meant an extra hour in the chair but the time goes fast.  Debi is there to fetch anything I need, to talk, to play games (haven't had time so far), makes the time go.

The novelty of the rest of the weeks experience is worn off already. The first two days (remaining Tuesday and Wednesday) I am busy keeping busy. I get a lot done on my woodworking projects and any other jobs that are waiting. This burst of energy lasts until around Thursday noon when I crash. I sleep. Wake up and feel tired and 'crappy' and then go back to sleep some more. It seems like the first week I got better after a couple days but this week it's held on through Saturday.

Saturday is better and I do get some work done. I sawed up the tops for two more stools and gathered some more acorns (squirrels had broken into my stash and eaten half a pickle pail of red oak acorns). I had to beg out of a birthday party for my grandson in Chicago. After the fact, I am glad I did. It would've been tough.

So, week 5 in a nutshell:
  1. Back in the program. 
  2. Novelty has worn off. 
  3. Reality check with the IV's (next time I ask for Chemo Nurse to stick me).
  4. When I say 'I feel fine' it means I'm not physically ill at the moment. Chemo lowers your standards for what feeling fine means. 
  5. I miss the Grandkids.

Monday, August 30, 2010

Chemo: Week 4 - concerned.

As I approach the end of week three and beginning of week four, I am a little bit concerned that I'm not doing as much as I should be in fighting this cancer. I feel great. I am doing everything I would normally be doing (and more). 
 I feel great but people with early stage cancers do feel great so I take little comfort in this. I am healthy and strong ( and feel fully recovered from the ill effects of the chemo) and I have to assume the cancer, which is part of me, has recovered likewise.
A friend who has gone through this told me that for cancer patients chemo becomes like a security blanket. That would explain some of my concern. My blanket is missing these past two weeks. As much as I hate the feeling, it is comforting to know we're fighting the fight. It's a star to which we can hitch our wagon.

Three things I can take out of this week:
  1. I recover pretty quickly from the side effects of chemo (at least the ones I can sense). This is reassuring since after two more cycles I will have to recover for surgery. 
  2. I was able to umpire some baseball games ( those not rained out)  that I wouldn't have been strong enough (or it would have been too dangerous) to do under chemo. 
  3. I will be able to cuddle the grand kids all this weekend. This would have been dangerous with low immunity during chemo and I beyond my energy and strength (nearly so even when I'm healthy) without this break. 
I'll take these three things to the bank and save them up for next week when I get my blanket back and I need some warm, soft, memories of beautiful, smart children who are full of energy and life. Like Frank Barone said; " Smell that?", as he sniffs the grand kids heads; "That there's the fountain of youth."

Tuesday, August 24, 2010

Chemo: week 3 - and holding

Week 3 begins today.
Week 2 had been pretty mild (not too much discomfort or fatigue) so we weren't quite as apprehensive about another treatment as we drove to the chemo place yesterday afternoon. After my blood test, we met with Oncologist (my usual Dr. this time - not his 'don't do anything fun' colleague).

After asking all about the past week (symptoms, any problems, ability to work, etc. ) and checking me over ("any pain here?", "deep breaths", etc.) he was pleased with my progress. It was all good.

But when the results of the blood tests came in he was concerned that my hemoglobin had dropped so much during the past week and, although it was still well within safe range, he was afraid another dose of Gemcenobin would take these numbers down farther than we wanted. Rather than risk a protracted illness, he concluded that we take the following course:
  1. Stop our first cycle at the two treatments we've already taken.
  2. Take this week off to give the blood counts time to recover. 
  3. Stay with our plan to take next week off as well.
  4. Begin the second cycle on September 7th at a slightly reduced dose - so my counts don't drop as much.
Woo Hoo (right?)

Well, we're not sure. It's great to have a week without that stuff going into my system. Even though it didn't have much effect on what I've been able to do, it was NOT a pleasant experience. But a week off is a week that the cancer killers will not be in my system and, according to Oncologist, any cancer cells will begin to grow again (though they will be starting from a reduced level). It illustrates what a delicate balancing act this chemo treatment is.

Notes from meeting with Doctor:
This is the first time we've met with our Oncologist since the first treatment so we all had questions:
  1. OLD SWICHEROO: Cisplatin VS Carboplatin. Cisplatin isn't currently available so we're limited to Carboplatin until that changes. Carboplatin isn't used as much as Cisplatin but, according to Oncologist,  it is generally considered to be equivalent. It also tends to have milder side effects but this doesn't seem to effect it's potency as a cancer killer. When the pharmacy tells us that Cisplatin is available we could switch back for the remaining treatments but there doesn't seem to be any reason to do this. Oncologist asked me if this would be something I would want to do? I say, why risk more severe side effects for no added benefit. He agrees.
  2. COMFORT FOOD: I gained 3 pounds since last week (after loosing ~ 4 the week before). Wife credits this to my eating all the time (virtually) to keep food in my gut (at suggestion of Chemonurse to prevent nausea and relieve discomfort). Oncologist suggests a different tact: queasiness and discomfort  may simply be indigestion caused by the chemo drugs destroying the mucus lining to the stomach and intestines. Since there are no sensory nerves in the stomach the resulting symptoms (body's call for help), although manifesting itself differently in different people, is basically just acid refulux (which seems to be the diagnosis for everything these days - have you noticed?)  And this can be relieved by taking antacids like Tums or Prilosec (12 hour relief). 
  3. BATTLE OF ATTRITION: So Wife asked Oncologist what happens to the cancer when we pause treatment like this.  He said it starts growing again, of course. Seeing our concern, he quickly added that this is quite normal. He drew a graph with the curve of a exponential decline that drops quickly at the beginning and tapers off to nearly horizontal. He said; "This is what happens to the cancer over time during chemotherapy." "But", he continued; "if you look closely at the line you will see that it is really a series of humps and valleys where each valley drops lower than the last.  So, even though the cancer recovers a little between chemo cycles, each cycle knocks it down more and more until it's so low that it will not recover." Attrition:  keep pounding away at the enemy until it just gets tired of the beating and gives up. 
  4. REVISITING THE PLAN: 




    • We take the next two weeks off to let my counts recover and resume with cycle two as planned.
    • We will adjust the doses down to maintain count levels throughout the complete cycle.
    • Complete two more cycles (for a total of three) and then evaluate whether to stop and do the surgery or to continue with chemo for the total of seven.

So now what to do with all this extra 'feeling good' time? Tonight I umpired a Fall Ball little league game and tomorrow I will Ump a double header. It doesn't get much better than that!

Chemo: week 2 summary

It is now Tuesday morning (August 23, 2010); the end of  my second week of chemo.  It's been a good week and we've been on vacation (up north) until yesterday so I haven't kept up on the daily events.  Here is the past week in summary: 

After feeling really good on Monday, I was a little apprehensive about the second treatment, last Tuesday. It was supposed to be a much shorter time at the chemo place but by the time we got through all the steps it took about 4 hours. A lot more waiting around this time where the first visit was bang, bang, bang, you're done (5 hours but it moved along).

Our regular doctor had duty at the hospital so we met with another member of the team. My tests were all good and my blood counts had only dropped to the minimum normal range. She said they would continue to drop with the second treatment of Gemcenobin today and that I should continue to watch out for infection or contagion. We asked if we could travel 'up north' later in the week and she said it was okay; "... as long as I don't do anything fun." I loved that. She thought we were going to 'the cabin' or playing on the lakes because she said I shouldn't drink lake water, etc.

This week was billed as being an easier week because I was only getting the Gemcenobin and not the Carboplatin.  The Gemzee only takes 45 minutes to administer (vs. 2 hrs. for the platnum). But with the anti-nausea prep I-V's still take an hour. As the Gemzee was going in I was hit by a feeling of deep fatigue. Like all the crappy feeling of the previoius week landing right on my chest (whole body). Nurse Kim said this was probably the steroids because you usually don't feel the chemo right away like this. I didn't argue but I still believe it was the chemo.

We stopped to eat lunch on the way home. We sat outside at the resturant and I got a little chilled. I had the sniffles pretty bad before bed and I blame that on being chilled. Sniffles passed as soon as I layed down and never returned.

I was still knocked down when we got home so I layed down for a nap. After an hour or so I awoke to  intense panic attack. I have claustrophobia and I have a real hard time in closed places (airplanes, back seats of cars, trains, carnival rides). This was the same feeling only the 'danger' had been injected inside my body and there was no way to get out of the situation. (The last time I tried to fly, I made them go back to the terminal and let me off the plane.) This was a desperate feeling but I have read that you need to distract yourself to end the attack so I grabbed my iPod and went for a walk. I listened to White Stripes (LOUD). Some of those songs I like to sing along, so I did. I must have been a sight to see - but it worked, so I don't care.  I don't know if the panic was from the chemo or  the steroids (for nausea) but I was able to keep it from returning the rest of the night ( by dodging any little feelings before they can take hold). I didn't have any trouble getting to sleep and slept well through the night.

I had that crappy feeling the first and second day. It's kind of a warm (not a comfortable warm) feeling in the core of my body (and head too, I guess). It's nearly nauseous but not quite there enough to take another pill or take a Queasy Drops. Eating helps - but only while eating - so I try to eat small amounts, often. It's like a weight that's pressing everywhere. I was only on the milder anti-nausea drug (Ondansetron) because nausea isn't one of the big side effects for Gemzee. I still had some of the booster (Prochlorperazine) haven't needed it. summary

It's amazing how much energy you have when you feel good (or not as bad as you expect). I spent most of this time in my workshop; assembling, sanding and finishing on the fourth of a series of wood stools that I've been building. It's nice to have this piece-work to keep my mind focused on something else.

By Thursday I was feeling pretty good so we made the drive 'up north'. I was fine driving the first 2/3's of the 5 hour trip and then turned it over to Wife. I spent the rest of the week visiting relatives (some had driven from Arizona) and working on our tree farm.

I DID do some fun things but I didn't drink lake water. I did check on an experiment I did in planting trees this spring.
April: Transplanted Walnut with carpet

 We have an area on the farm has such rich soil so we've had a hard time getting the young trees to survive the competition with the grass. This spring I cut an old carpet into squares (2 - 3 foot square) and layed these around the newly transplanted Walnut.
June: Carpet providing mulch for young transplant
In June, I checked the progress and found all the seedlings had survived and were growing and the carpet was effectively holding the competing grass at bay.
August: Grass has draped over carpet but hasn't encroached on tree.
By mid August (this trip) the grass had draped over the carpet so that it looked like it had defeated the carpet when in fact the carpet was still holding the grass plants at bay and providing effective mulch for the growing tree.

Tuesday, August 17, 2010

Vandalism at the Baker house.

Evidence: Click on pictures to examine.
At approximately 2 PM on August 14, Husband (me) was walking out of the workshop when he noticed a pile of wood chips on the lawn.

He looked up to discover that something had chewed a large hole in the side of the Baker house.  The vandal had also ripped off the fence on three sides and then chewed up the floor along one whole wall.  It was obvious what the vandal wanted but we've never seen this sort of flagrant disregard for property in all the years we've lived here.

We keep a lot of bird seed in that house (mainly black oil sunflower) so we figure the vandal must have been after food. But everyone in the neighborhood knows they are welcome to take whatever they need - free of charge - no questions asked. All we ask is that they don't waste it -- and they allow us to watch.

The Baker house has been hanging in the yard all summer without anything taking much interest. It is much smaller than it's neighbors and more difficult to access. And, although it is regularly visited by many birds and an occasional squirrel, it remains the least popular hangout in the yard. Everyone has been very nice about eating the seed and leaving the house intact. Why would someone suddenly take such an enthusiastic interest in such a meager supply of food.

The Baker house
The only known witness to this event was Wife, who was  in the living room - which over-looks the yard - when it happened. Wife explained; "I was sitting in the living room, watching TV, when I heard this awful racket in the yard." She explained; "I didn't think much of it because it's common for the birds to make a commotion when a neighbor cat is in the yard."
 "I should have looked right away."; She admitted; "But I was distracted and by the time I did look - all I saw was the house swinging madly from on it's hanger. "

Of course the first suspect is the rascally squirrel. But it looks like the whole corner of the house was bitten off. This would take much too much strength for a squirrel; or at least a much larger mouth.

Other possible suspects could be deer, bear, opossum, muskrat, gopher/chipmunk, and raccoon. We live in the middle of the city so if there was a bear, we would have heard about it. And a bear would have chomped this whole house in one bite. Deer have been seen in our yard but not for a few years. Opossums, muskrats,  and gophers don't usually climb and probably couldn't jump the 4+ feet to reach the house. This leaves the raccoon as the prime suspect.

We haven't had many raccoons since the city switched to covered trash cans but there have been recent reports of sightings in the neighborhood. A waste basket was overturned and emptied on the deck. And, on the night following the vandalism, a large feeder was completely emptied. 

So Husband and Wife agree that it must have been a raccoon. Another mystery solved. Which only leaves some minor house repair and maybe a little higher location for the Baker house, and neighboring feeders, in the future.


Monday, August 16, 2010

Chemo; day 6 - back to feeling normal

What a beautiful day!! Weather is perfect. Looks like it will be the nicest day of the whole week (or maybe even month).

I woke up this morning feeling perfectly normal again. Went for a bike ride (after eating something, of course). Hauled a pinball machine, I've been been fixing for a friend, into my basement where it's closer to me and my instruments. It was getting in the way where it was and this will make it easier for me to work on if it's in my basement. [More about this pinball repair project]

finished version of 8-legged stool
Proceeded with sanding the top of another 8-legged stool.  These are some silly little stools  (that my brother designed) that are fun - and challenging - to make.

It's starting to register in my brain what the strategy of this Chemo-therapy is all about. This is my day for my body to return to normal. My body has survived this round of 'poisoning' and it has recovered. Tomorrow they will sample my blood  to see if my Kidneys are still working and my blood is back to normal. If everything checks out, they have learned that the doses they gave me last week were correct. I believe that if I had recovered yesterday and was feeling normal, they may be tempted to tweak up my doses tomorrow. If I still felt shitty today they may have backed them off a little.

Anyway, today is my day to feel normal again before I prepare for another week of - whatever comes. The weather is great. There is a nice breeze to keep the mosquitoes away so I can catch up on some gardening. With time and energy left over to catch and relocate another chipmunk, work some more wood, go to Perkins for dinner with Wife and Son2, and to end the day with a nice glass of wine. A great day to be alive.

AND I am in a good enough mood to catch up on my BLOGing.

Sunday, August 15, 2010

Chemo; day 5 - whole body is a square peg in round hole

Sunday.
I have run out of nausea pills (except for the 4-hour boosters) but they seem to do the job. And I have those Queasy Drops.
Today I can concentrate enough to write on this blog.
I'm not sleeping at night as well as I was earlier in the week. This is pretty typical; worrying about whether I'm doing the right thing about (fill in the blank)
My body just aches in general. Every part feels a little off kilter; like trying to jam a square peg into a round hole.

The wind has picked up today so I can spend time in the garden without getting eaten alive. I can cach up a little so I weed, pick stuff, prune back blighted tomato plants, toss giant zucchini onto the compost - a shame, I know.

Went to a friends house to help her with her moving sale. I took some flower pots off her hands - nice big ones - that I am using to re-pot some of our deck plants that have outgrown there's. Just what I needed. Now I can use up some of my newly "screened" compost. (I built a compost screening machine, earlier this summer, out of spare parts. It works pretty slick. [Here's a video of the screener in action] )

I drove a chipmunk out to the airport. I'm catching chipmunks in live traps and moving them out of town. Is this humane? They probably won't survive out there but it's way better than poison. I trap one and it seems like 3 more show up. It's a summer-long dance. We live next to a golf course (on the other side of the tracks - of course) and I've come to believe that people who live down town live trap them and dump them off at the golf course. There's nothing to eat on the golf course so they find their way to our yard. It's like a relay race to get them moved out of town. Friends tell us if we didn't feed the birds we wouldn't have chipmunks.  We like birds.

Saturday, August 14, 2010

Chemo; day 4 - tired of eating.

Saturday.
Tired all day. Just worn out. Don't even feel like writing.

Muscles all sort of ache. I can still exercise so I do - and stretch. That helps a little.  I take Tylenol for the pain and that helps a lot. I worry about taking Tylenol because it is known to effect the Kidneys and that's the most scary side effect of the Chemo, as well.

I'm tired of eating but I still do. "Keep food going through the system. " Thank goodness for watermelon! (both food and drink). We're checking the internet for smoothie recipe's - there are a ton.

I'm learning how both constipation and diarrhea can be a side effect. (I'll never learn how to spell diarrhea.)

I sand and glue a little on a couple woodworking projects.

There's more golf on TV and friend from NY sent us an iTunes TV series called "IT Group". She sent the first season. We watched the first episode.  It's great! They've got those "IT guys" spot-on correct. One reason I retired. 

Did I say, I don't feel like writing?