Mets Days 49 - Dendreon trial?

Today Jennifer, Chelsea and I made the 400 mile round trip drive to and from Virginia Beach to check out that sponsoring location of the Dendreon trial.  It's a long drive, and according to the trial manager, everything must be done in the area: scans, blood draws, infusions, etc.  It doesn't make sense to me.  Since it's a double blind trial, I'd have only a 50/50 chance of getting the experimental treatment, which has never been used for urothelial cancer.  It has been FDA approved for prostate cancer.  We signed the forms, but I'm still trying to decide if it's worth all of the effort for a seemingly remote benefit.  I'd ned to start this trial before July 25, so I have some time to decide, although the lead time is about 20-30 days from signing up to the first treatment (or placebo).  As I told Jennifer on the way back, I feel like a guinea pig.  I don't like that feeling. 

Mets Day 47 - SPT out; NIH consult

This morning I tried to sleep in the car as Jennifer drove up to Hopkins.  I was so tired that I knew I would not be thinking clearly.  After an interminable wait, we consulted with the nurse and explained our frustrations and fears (see the prior post).  We were promised additional references for physical therapists, and given some more information on neobladder training.  Dr. Schoenberg came in and agreed that it was ok to remove the SPT, and in just a few minutes, it was out.  The incision was a sideways V-shape, like a greater than symbol, and each leg of the V was about 3/4 inch long.  The tissue was inflamed and very tender from the sutures, but did not appear to be infected.  Dr. Schoenberg explained that there was no need to stitch up the hole in the neobladder, since it would seal itself in a matter of hours with all that mucus, and completely close over within 48 hours.  Likewise, the external incision would heal itself from the inside out in a couple of days.  We just need to keep changing the dressings, since there is a possibility urine could ooze out.

I have felt an immediate and continual decrease in the amount of pain in the area around the site of the SPT.  It is a great relief to have it out.  One day short of four weeks is quite enough for that tube.  It served its purpose well, but I have been able to drain my neobladder without needing it.  Let's hope it stays that way.

We traveled directly from Hopkins to NIH, where we met with Dr. Andrea Apolo, who is probably the single most knowledgeable doctor about the status of experimental drugs and clinical trials regarding bladder cancer.  She generously spent well over an hour with us, covering the waterfront regarding our options, including the following:

• There is no known cure for Stage IV bladder cancer.  Nothing has been clinically shown to be effective as a cure, including any type of chemotherapy, immunutherapy, radiation treatments, diet, or whatever.  Anyone who says otherwise is ignoring the facts.  
• The research today is focused on trying to slow the pace of the cancer.  Even a few months of additional time is considered a success.  Each advance builds on past advances, and is how other cancers have eventually found effective long-term treatments.  
• Historically, 90% of all Stage IV bladder cancer patients die within 5 years of the Stage IV diagnosis.  The 10% who survive do so because, for reasons unknown, the cancer does not develop in a distant location.  
• Virtually every bladder cancer patient who has distant metastases develop will die from it.  The average (mean) duration from diagnosis of the distant metastasis to death is about 12 months.  
• The standard of care for someone in my position - node positive, no distant metastases found - is to scan every three months or so, but not administer any additional therapy, because there is no evidence that anything will work.  
• There are three clinical trials available to me:  the Dendreon trial, and a trial in Michigan using a drug called sutnet (details here), and a pelvic radiation trial (details here).  Of these three, she thinks that the Dendreon trial is the most promising, and has the fewest side effects.  
• I also can request that my oncologist give me a different type of chemotherapy, even though there is no evidence that any of them would work.  She said that GemCis did not work, so avoid anything using those drugs.  Options could include MVAC with a taxene, or any other cocktail we could dream up.  Insurance likely would fight paying for it, because there is no evidence that it would help.  She called this a "very aggressive" option, and did not recommend it.  She listed it only because she wanted to be complete.
• She said that there was nothing available in other countries that she would recommend considering.  

Of all these options, she encouraged that I look at the Dendreon trial.  She said that it was based upon an interesting theory, but there was no evidence that it would work.  There also was only a 50/50 chance I'd get the drug.  She said that it has very few side effects, unlike the sutnet trial, and was systemic, unlike the pelvic radiation trial.

I think that we've squeezed the sponge dry in terms of research on options.  Dr. Apolo agreed that there was no reason to talk to Dr. Dawson at Georgetown.   All doctors have agreed that the Dendreon study is the best option.  I expect that we'll be pursuing that.

Mets Day 46 - 4 am frustrations and fears

It's around 4 am Tuesday morning.  Tonight has been another night of uncomfortable and disrupted sleep.  The SP tube is a source of constant pain.  Every time I move, it pulls and tugs against my skin, which is red with irritation and yellow with lack of healing.  With the SPT blocked, I am required to get up every 2 hours and drain my neobladder.  I have received no training on how to do it.  I have felt abandoned by my doctors.  I am deeply frustrated at my difficulty in consistently voiding.  Over this weekend I found myself regretting the decision to get a neobladder.  If the rest of my life is going to be so short, why should i be spending it battling a piece of bowel and trying to make it act like a bladder?

In the dark of the night, as I lay awake, unable to sleep, unable to find a position that does not create pain, prevented from taking Vicodin because it causes constipation, wishing Ibuprofin was more powerful, moving from bed to chair and back again, trying to void and more often than not failing, it is easy to let the mind slip into melancholy, savoring the fetid ashes of defeat, wondering of ever I will feel joy and happiness again.  4 am is no time for happy thoughts.  I roll my tongue around my dry mouth and wonder how long I have to live.  What will my quality of life be?  How will my family cope after I am gone?  What can I do to prepare them and me for the inevitable?  I feel alone and abandoned.

My sole source of comfort comes by pouring out my frustrations and fears to God, who knows my heart, knows my needs, knows my family, knows all.  I have been humbled by my physical ailments, and know that there is little that medicine can do to save me.  There is no known cure, no magic diet, nothing to assure me that the hands of men can save me.  For they cannot, and never could.  My comfort and salvation comes from the Lord, and no other.  Only He can assuage my frustrations and fears.  Only He can answer the pleas of my heart.  Only He can give me rest.

Mets Day 44 - still in pain

This has been a day of pain.  I've been alternating between a dull aching pain across my abdomen, to a sharp stabbing pain similar to what I felt in the hospital.  I've spoken with the urologists on call at Hopkins twice; once last night and another time this afternoon.  They believe that, as the neobladder has been expanding and holding more urine, it is going through a series of spasms as it shifts from a bowel function to a urine reservoir function.  They also think that the neobladder is pushing on other parts of the colon, and stimulating some nerves which triggers the pain. 

At their recommendation, I have the catheter reconnected to the SP tube, to give the neobladder a break from holding urine.  If the pain begins to diminish, I am to try corking the SP tube and trying to void it through the urethra.  As it is, I have been in so much pain that I cannot tighten the abdominal muscles sufficiently to empty the neobladder.  I've been taking large doses of Vicodin to manage the pain; the trouble is, that can contribute towards constipation, which further exacerbates the pain.  So I've been told to rely on Advil or Tylenol, and not the Vicodin, for pain management.  Vicodin is far more effective, however.

The pain has been such that I have been unable to sleep last night, and any kind of movement of the torso shoots bolts of fire across my abdomen. Sitting up or rolling over is very difficult.  I feel like I have seriously regressed, and I'm back to day 2 or 3 after the surgery.  I'm also bummed because this setback means that I almost certainly will not have my SP tube removed on Tuesday. 

I've been frustrated because I have not yet been able to meet with any physical therapist to teach me the proper way to empty my neobladder.  I've just been making it up as I go along, and sometimes it worked, and other times it didn't.  Hopkins finally gave me the number of a PT yesterday afternoon, but she has not been answering her phone and there is no voicemail. 

So I move incredibly slowly, shuffling from chair to sofa to bed, and oh-so-carefully lowering myself into position.  Sudden movements can be excruciating.  Easy does it. 

Mets Day 43 - Hopkins' views; pain

This afternoon Jennifer, Chelsea and I endured the Memorial Day weekend traffic and drove to Baltimore to meet with Dr. Santa Maria in Hopkins oncology department.  We wanted to pick his brain for his recommendations regarding second line therapy options.  His conclusions were almost identical to Dr. Aragon-Ching's from GW: there is no established second line adjuvant therapy, since GemCis failed; the best thing I can do is get into an experimental clinical trial; he recommended the Dendreon trial, although there was almost no evidence that it would work; Hopkins might be opening the Dendreon trial, which would be the closest location to us.  Chelsea had identified a dozen or so other possible trials, but Dr. Santa Maria explained that those required measurable metastatic activity in a distant location, so I would not yet qualify for that.  He did identify one other possible chemo trial in Michigan, but it was adding another drug into the failed GemCis regimen, and he discouraged that.  We left it with the ball in his court to verify if Hopkins was indeed opening the Dendreon trial there.

We're meeting with NIH on Tuesday, and Georgetown in a week or so, so we're continuing our fact-gathering.  We'll make our decision in the next week or two.

We also asked Dr. Santa Maria about my prognosis.  He confirmed that I was "technically" in Stage IV, the most advanced stage of cancer.  He also confirmed that only 10% or so of patients with Stage IV urothelial cancer survive more than 5 years.  He did not want to offer any opinion on my specific prognosis.  He did agree that I had a "high likelihood" (meaning greater than 50%) that my cancer would recur in a distant location, and once that happened, typical survival was a year or less, although that depended on where it metastasized and how quickly it moved.  In answer to our questions regarding work and life, he said that if there was anything that I really wanted to do, such as trips, or other things, he would advise doing them sooner rather than later.  If I dodged the bullet, he said, then my life would be richer in any event. 

On the drive back, I felt an increasing amount of abdominal pain, different from anything that I'd felt before.  It felt sort of like gas, sort of like cramps, and involved my entire abdomen, not just my neobladder or SP tube area.  After arriving at home, I laid down and tried to rest, but after an hour the pain was intensifying.  I took two Vicodin and had Jennifer get the heating pad to lay over my abdomen.  I wasn't running a fever, and with the pain continuing to build, we called the Hopkins urologist on call for advice.  She told us that it sounded like the bowels were actively cramping, and prescribed a type of anti-cramping drug to counteract it.  She recommended that we first try Gas-X, in case it was just ordinary gas.  Jennifer is picking up the drugs now - I'm glad we're near a 24 hour CVS.

The plugging of the tube overnight last night did not lend itself to a good night's sleep.  I was up every couple of hours trying to void my neobladder - a process that takes 10-15 minutes, factoring in the need to change dressings and Depends.  Usually, I've been able to completely empty my neobladder without needing the SP tube.  The only times that I've had over 50 cc leftover is after I have exerted myself and don't have the strength or energy to use my abdominal muscles.

We finally got the name of a local physical therapist to assist me in my peesical therapy, but have yet been unable to reach her.  I hope she's available over the weekend.

Tonight, I think I'll use the night bag.  I'm pretty wiped out.

Mets Day 42 - Potty training

So far, the neobladder seems to be holding up well.  I've plugged the SP tube, and every few hours practice peeing normally.  Sitting and bearing down seems to work best.  I practice stopping and starting the flow, which I was told is an essential life skill.  It takes multiple attempts to drain the neobladder.  Sometimes I try pushing on the area where the neobladder is located to help the flow.  After I'm unable to get anything else out, I uncork the SP tube and measure the amount of urine that comes out.  Only once has it been over 50 cc. 

I'm making all of this up as I go along, because I have yet to meet with the physical therapist that can coach me in neobladder training.  Hopkins has promised to send me the names of their therapists in the DC area, but so far I have received nothing. 

Even though my neobladder does not have the nerves in it that signal when it is getting full, I have noticed that I can tell when it is filling up by how it feels different - like there is a bit of weight that is pulling or pushing down a little bit on my intestines.  So while I'll never again be doing the cross-the-legs nervous dance, or other manifestations of an urgent need to pee, I can still be attuned to my body to know whether I need to go. 

For the first couple of evenings, I elected to not try the plug at night.  Instead, I hooked the night bag onto the SP tube, and slept (or tried to) with the drain line attached.  Tonight I'm going to try keeping in the plug, and seeing how it goes.  I've been warned that incontinence at night is common. 



We still flush the SP tube three times a day.  The amount of mucus that we have been extracting seems to be declining.  So far, I have not had any problems with my urethra getting plugged with mucus - a very good sign that I'll be able to avoid self-catheterization. 
I would very much like to be done with the SP tube.  The opening where it emerges from my body is irritated and painful.  When I move and the tube catches on something and pulls, I feel a jolt of pain.  Stretching my right leg while going up and down stairs must be done slowly and carefully.  Hopefully, my potty training will be sufficiently advanced so that the SP tube can be removed next Tuesday. 

Mets Day 41 - fixing my port

Today I went into GW to have the interventional radiologists figure out why my port was not permitting blood to be drawn from it.  They took me into the OR, sedated me, did a scan with contrast dye, and figured out that my port was kinked and the tip had burrowed into the wall of the vein.  So they snaked a catheter up through my groin, grabbed onto the port tip, straightened it out, stripped the tip of some tissue that had grown around it, tested it, then wok me up and send me on my way.  I was pretty groggy for the day, and took a nap and went to bed early.

Having a fully functioning port is important because whatever additional therapy I get likely will include a lot of infusions.  Better to use the port rather than have my arms look like a pin cushion. 

Mets Day 40 - Catheter out; future musings

Warning:  the first few paragraphs of today's entry is not for the squeamish.

Today my Foley catheter was removed during my visit to Johns Hopkins.  20 consecutive days of having a Foley is no fun.  I was glad to be rid of it.  The nurse deflated the bulb, then said, "take a deep breath" and . . . shhhhhttttuuuuup! The nurse helpfully told me after that my going cross-eyed during that procedure is a common reaction.  Uh, thanks?  

But it was not all sweetness and joy; the same nurse who removed the Foley immediately grabbed an evil-looking probe and happily announced that I would now be taught how to self-catheterize.  Apparently this is an essential skill once the SP tube is removed, and mucus has blocked my urethra and is preventing me from voiding my neobladder.  The act of self-catherterization is as unnatural as punching yourself in the crotch, and it feels about the same way.  I did find that it is possible to do while cross-eyed, however.  I hope to never have to do that again. 

Once my voice dropped a couple of octaves, I was given a plug to use to stop the drainage of the SP tube, and was instructed to let my neobladder fill with urine.  I am to practice draining it every 4 hours, night and day.  The trick is to use my lower abdominal muscles to squeeze my neobladder, and control the flow.  The exercise is almost identical to kegels, which every woman who has given birth knows well.  After I try to empty my neobladder with kegels, I am to uncork the SPT and measure how much urine comes out through that tube.  My goal is fewer than 50 cc leftover. 

I am supposed to master all of this in a week.  I have an appointment to go back to Hopkins next Tuesday and have my SPT removed.  But if I have not reached the 50 cc goal consistently, I'm supposed to cancel and reschedule for the following week.  So now I am focused on re-learning potty training. 

After all this fun had concluded, we met with Dr. Schoenberg, who strongly advised us to find a second line therapy, but not take the first thing that came along.  (GemCis chemo was the "first line" of defense; it's no longer an option since it failed.)  He was aware of the Dendreon clinical trial that Dr. Steinberg had identified, and said that Hopkins might soon be opening it.  But he was not particularly excited about its efficacy.  He suggested that we consult with the Hopkins oncologists, and also consult with oncologists at Georgetown and NIH, and pick their brains on second line options.  He encouraged us to carefully evaluate both the clinical trials and therapies outside of the trial setting.  We have an appointment with the Hopkins oncologists this Friday.  I have a call into the NIH oncologist, and spoke with the Georgetown oncologist this evening, and tomorrow will call her scheduler to set up an appointment.  Dr. Schoenberg made clear that now, more than ever, it is important that we to take charge of investigating and directing my treatment options. 

We also asked Dr. Schoenberg about my prognosis.  He said he no longer made guesses about how long a patient would live, because he's been wrong so many times.  He allowed that my condition is "quite serious", and didn't disagree when I said that the odds were slim that I would survive more than five years.  We then put the question another way - what was his advise for my planning my life?  Do I go back to work?  Do I stop working and do other things in life?  He responded by asking my view of work:  did I love it so much that I never wanted to retire, or did I hate my job and couldn't wait to get out?  I responded that I very much enjoyed my work, but it was a means to an end, and there were other things in life that were more important.  He said that, if he were in my shoes, he'd want to take a hard look at the financial situation, and whether he could afford to stop working.  If he could, he'd probably walk away from work and go and do the things that he would rather do.   He cautioned that, should I choose to do that, I should have a specific idea of what that was, because he'd probably go crazy sitting around the house all day.

It was an interesting conversation.  I'm finding it's hard to nail down doctors on a specific prognosis.  I intend to continue to explore this theme with the other doctors that I meet, and maybe a consistent thread will emerge. 

At this point, I have no idea what I'm going to do with regard to work.  If I knew that I was completely cured, or there was a very good chance that I had the cancer beaten, then I'd be chomping at the bit to return to the office.  I'd be working from home, sending dozens of emails each day, and reinserting myself into my cases.  But that's not where I'm at.  Unless I am able to find some experimental treatment that stops my cancer in its tracks, the odds instead are very high that the cancer will return in one or more distant locations, and when it does, my days likely will be numbered in months.  If and when that happens, no one knows. 

Readers, what do you think I should do?  Leave your comments (anonymously if you want), or send me an email. 

Mets Day 39 - almost like a vacation

After a lousy night's sleep last night - lots of tossing and turning, each time feeling like my SP tube was being pulled from my abdomen - at about 6:30 am I migrated to a recliner and tried to doze.  At about 9:30 I gave up.  I still can't get in my hot tub as long as I have tubes coming out of my body, so I am precluded from a key part of my morning ritual.  I compensate by taking exceptionally long showers - the only time that I am free of gauze and bandages and pads and uncomfortable non-breathable disposable underwear. 

With no obligation to go into work, I puttered around the house, sipping a protein shake, reading the newspaper, and continuing to sort through three weeks of mail and magazines.  At about 1:30 pm, as I sat in a recliner in front of my TV, surfing between Sports Center and other channels before finally settling on the final installment of the Harry Potter movie, I began to let my mind drift, and realized that this was almost like a vacation.  I didn't have to check my emails, or attend conference calls, or edit briefs, or do any of that other stuff.  It was the first time since I left for Chicago that I had begun to relax enough to feel that way.  Then I moved and felt a jolt of pain as my SP tube pulled against side.  Not quite a vacation, I guess. 

This afternoon, Fox Chase Cancer Center in Philadelphia called and scheduled me for an appointment on June 7 with Dr. Betsy Plimack. They are the closest location that is running the clinical trial that appears to be the best bet for me right now.  They are getting all of the records and tissue samples from Chicago, and so they will have all of the ground work done by the time we meet.

Tomorrow Jennifer and I will go to Hopkins to have the Foley removed, meet with the neobladder physical therapist, and (hopefully) consult with their oncology team.  I'm not expecting anything different that what Dr. Aragon-Ching told me last week, but it will be helpful for me to process it again, plus Jennifer will be there and can ask her questions. 

On Wednesday, I'm supposed to go into GW so an interventional radiologist and evaluate why my port is able to receive infusions, but not be used to collect blood.  It's supposed to be a two-way device.   It could be as simple as dislodging a flap of skin, or they might have to replace it.  No big deal. 

Mets Day 37 - Slowly recovering

I have not been terribly active these past couple of days.  The doctors reiterated that for at least a month after surgery I should avoid lifting anything heavier that 5 pounds, so when Jennifer got it in her head yesterday that she wanted to clean out the garage, I had the best excuse ever.  Even better, she was the one shooing me back to the recliner.  Twist my arm, ok, ok, I'm sitting down.  I did direct traffic and sort through stuff a bit.  It's amazing how much stuff we accumulate.  We'll be making a sizable donation to Goodwill. 

In medical news, my tissue is being analyzed to see if I qualify for the clinical trial I referenced on Thursday.  We'll know in a week or so.  I have an appointment with Hopkins on Tuesday, where I will seek their counsel on further treatment options.  I hope that they will remove the Foley catheter, and start my neobladder physical therapy.

I have been decreasing my use of the pain medication to an as-needed usage.  I did not take an from Wednesday night to about 6 pm Friday evening, when I started feeling consistent twinges from where my SPT exits my body.  There is surprisingly little pain associated with the primary incision, and no pain associated with the cancer.  The doctors told me that the I can expect the most discomfort with the SPT - both pain, and continual leakage.  I continue to pack the SPT exit point with two 4x4 drain sponges, and two other 4x4 gauze pads, plus a large poise pad on top, and a Depends brief to hold it all in place. 

My appetite has mostly returned.  I lost about 10 pounds during the hospitalization.  I could probably stand to lose even more, but strangely enough, my diet is not at the top of my list of things to be worried about.  We continue to be the beneficiaries of the Mormon food chain, with huge meals being delivered at least three times a week.  In the LDS community, starvation is not an option.  We very much appreciate the generosity and service of our community of friends. 

Mets Day 35 - GW's view on treatment options

Today I met with oncologist Dr. Aragon-Ching at GW to discuss my treatment options.  She took more than an hour to consult with us in detail (Chelsea also was there, with a list of questions, and we recorded it so Jennifer could listen later).  It's hard to boil everything down because we covered so much territory, but here's what I took away from our meeting:

• There is no proven, established systemic treatment for me at this point. Without a target to shoot at, neither chemo nor radiation makes any sense.  Studies using taxenes require a solid tumor, so I am not eligible for those. 
• The standard of care for someone in my position is to carefully monitor me through CT scans every 3 months or so and see if any distant metastases develop.  
• Oncologists lack the diagnostic tools or knowledge of drugs that can work to prevent the spread of my form of cancer.  
• The clinical study identified by the University of Chicago (info here) is probably the best thing for me right now, although Dr. Aragon-Ching is unwilling to speculate on whether or not it will work.  My cancer has to have specific properties, which has yet to be determined, and even if I qualify, it's a double blind study, which means that there is only a 50% chance that I'd get the experimental process, but the other half would get the ordinary standard of care in any event. She encouraged us to follow up with that study.  (Chelsea already has done so.) 
• Dr. Aragon-Ching did not want to speculate regarding my odds of survival for either the standard 5 year time period for cancer patients, or a shorter amount of time.  She emphasized that each cancer patient is different, and each disease progression is different.  The farthest she would go is to make two general statements:  (1) of all patients with Stage 4 urothelial cancer (like me), around 10% survive for five years.  (2) once distant metasteses are found, the mean survival period is about 12 months.  She added that I am at the "good" end of stage 4, to the extent there is such a thing. 

This was a very helpful visit.  I was surprised when she told me that most patients didn't want to know as many specifics as me, or were not as proactive as me in examining their options.  I'd prefer knowing the facts, even (or especially) if the facts are negative.  It lets me better plan regarding those few things I can control. 

Mets Day 34 - Mulling over the options

During our return home from Chicago today, Jennifer and I had a rolling and unresolved discussion about the future.  Among the things we discussed and are considering:

1.  What is the best course of treatment now?  We are going to meet with oncologists from GW (tomorrow), Hopkins (next week), and hopefully NIH (following up from the BCAN patient forum), and will be reaching out to doctors at a number of other hospitals, to assess the best course of treatment.  We'll be evaluating clinical trials and better educating ourselves on whether systemic adjuvant treatment is appropriate, and if so, what.  Chelsea already has built a long list of questions for the doctors.  Jennifer is not a fan of double blind clinical studies, because there is only a 50% chance that I'd get the new treatment. 

2.  What is my prognosis?  We'll also be researching and discussing that question.  It's maddeningly difficult to get a straight answer out of most doctors, because there are so many variables:  age, co-morbidities, specifics of staging, type of disease, etc.  Nevertheless, the averages of past patients with similar presentations can help guide and manage expectations and inform life choices. 

3.  What do I do regarding work?  In the short term (e.g., the next few weeks), I will still be recovering from my surgery and training my neobladder, so I'll be in no position to soon return to the office.  My firm has been most supportive of me, and is aware that the recovery from this surgery was budgeted to be two months, so I have plenty of time to evaluate this.  Whether, when, and how much I return to work will be informed by a number of factors, including my prognosis, and what is best for me, my family, my work obligations, and my economic needs.  I will be carefully weighing all of those factors.  I do not expect that decision to be easy or clear. 

4.  What can I do to most help my family?  Tonight, it was simply spending time with them.  Each is reacting differently to the bad news, and it will take some time to work through all of the implications. 

It's a lot to sift through.  One step at a time. 

Mets Day 33 – Pathology Results: 12 nodes positive

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This afternoon we met with Dr. Steinberg, who gave us the results of the pathology of the bladder. prostate, and lymph nodes.  Anytime a doctor starts his comments with “this is not the news we were hoping for,” you feel yourself tightening up inside, waiting for the hammer to fall.  In short, I hit the trifecta:  the bladder cancer was more extensive that previously thought; 12 lymph nodes had metastatic cancer, and I also had prostate cancer.  The prostate cancer is the least important, since it was all contained within the prostate, and it’s now been removed. 

The bladder cancer was found to have penetrated the outer fatty layer of the bladder, which means that I have been “upstaged” to pT3a, from pT2b.  The higher the staging, the more serious the cancer.  The staging drives the future treatment, which I’ll get to later.

Most serious is the fact that, of the 61 lymph nodes that Dr. Steinberg removed from my pelvis and abdomen (35 from the right side, 26 from the left), 12 on the right side were found to have metastatic bladder cancer.  The prior scans had showed only three that appeared to be increased in size, and during surgery Dr. Steinberg did not see any that visually appeared to be suffering from necrosis.  That’s why he was so hopeful coming out of the surgery.  But the pathology pops that balloon. 

Meanwhile, my recovery from the surgery is proceeding faster than usual.  It helps that I am so young (relatively speaking).  The LPN removed the 27 staples that had closed my primary incision, and covered it with steri-strips.  They decided to leave the Foley catheter in for another week, but cleared me to travel home tomorrow.  I’m looking forward to that. 

But we’re still in shock from the bad news from the pathology.  Dr. Steinberg said, “we’re in uncharted waters here.”  There is no established treatment for where I’m currently at.  The first line of chemotherapy failed, and there is no proven second line of defense.  Dr. Steinberg said that he’d like to be able to identify the specific genetic pathways that my cancer is taking to spread, then give me a therapeutic treatment that would stop that – only he didn’t know how to do that.  He was quite candid on admitting the limits of his knowledge, and he’s one of the leaders in this field.  I got the sense that he was telling me that he’d given it his best shot, it didn’t work, and he was now turning me over to the oncologists for further treatment. He did say that he was going to have dinner this weekend with Dr. Schoenberg, my doctor from Johns Hopkins, and that they were going to discuss my case in detail. 

He recommended that we investigate clinical trials, and identified one in particular.  I’ll write more about that after I’ve had a chance to read about it and contact the investigators.  Dr. Steinberg said that clinic trials were like throwing darts – maybe you’d get a bulls-eye, but more likely than not it would have little beneficial effect.  He did note that he had a patient who had T3 and positive nodes, and five years later she was cancer-free, so you never know how it will go. 

So right now Jennifer and I are sitting at Promontory Point, which juts into Lake Michigan at the end of 55^th Street.  While we had hoped for better news, we both had understood that the pathology likely would confirm the fact of metastases.  The path going forward is far from clear.  Our days and weeks will be saddled with the looming uncertainty of whether the cancer will show up elsewhere, and if so, when, where, and whether it can be treated.  I accept that the odds are not in my favor.  I also accept that I have no control over the course of this disease.  I can seek out the best treatment, find the sharpest darts to throw, and trust in the professionals to aim them as best that they can.  But I know that they are all blindfolded, as am I. 

My vision is clear to the things I can control.  I can live one day at a time, grateful for each moment that I have to spend time with my family and friends.  I can strengthen my faith.  I can live with honor and dignity, doing unto others as I would have them do unto me. 

Mets Day 32 - Feeling ready to come home

The past couple of days have been relatively quiet.  On Sunday, we went to church at an LDS chapel located about a block from the Obama's Chicago home.  After, we came back to the Friary and Jennifer took a walk down to the lake shore in the sun while I took a long nap.  Apparently doing two museums in a row had drained my batteries.  It felt good to recharge. 

Today the home health care nurse visited and said everything looked normal.  The main issue we have been facing is dealing with continued leakage of urine from where the SPT tube emerges from my abdomen. We have found that the best way of controlling it is to pack around the tube exit point with gauze and a "poinse" pad -- a women's bladder protection pad -- sideways across where the tube comes out.  Everything is held in place with a Depends disposable adult diaper.  Unlike how the nurses in the hospital did it, we don't use tape to hold the gauze in place around the SPT.  During the six days I was in the hospital, the nurses used so much tape, and changed it so often, that it began to pull my away my skin, raising painful blisters and raw spots that would then get soaked in urine and infected.  Now that we have stopped using tape, we have been gently washing the raw skin and coating it with antibiotic ointment, and it has quickly healed.  It feels much better now. 

Today we drove over the Frank Lloyd Wright's home and studio in Oak Park, and took a tour.  His home was a workshop of sorts, and he was always tinkering and changing things around.  It was an interesting look into the mind of a remarkable architect and designer.

Hopefully, during tomorrow's appointment, the doctor will remove the foley catheter, leaving me with just a single tube.  As I understand it, the SPT will stay in place for several more weeks.  Starting tomorrow, and continuing after I return to DC, I'll be doing "peesical" therapy -- teaching me how to void my neobladder through muscle control and manually pushing down on the neobladder.  The SPT tube will stay there until I've got that process mastered.  (I'll also continue to use the SPT to flush out the neobladder several times a day to remove any lingering mucus.)  Depending on how I progress with the physical therapy, eventually the SPT will be be clamped off while I practice, available to be used in case my urethra gets blocked with mucus or I can't otherwise drain my neobladder.  Only after the therapist and the doctors are satisfied that I can consistently empty by neobladder via the urethra, and the level of mucus has sufficiently decreased that there is little risk of plugging, will they take out the SPT. 

We also hope to get the results of the pathology tomorrow.  I emailed today to see if it was ready, but did not get a reply.  I'll post a summary of that as soon as I receive it.

We're also very hopeful that during tomorrow's appointment, we'll be cleared to return home to DC.  I'm ready to return home. 

Mets Day 30 - AIC

Having survived the MSI yesterday, and after an ok night's sleep, this morning we decided to go to the Art Institute of Chicago.  Jennifer is the artist of the family, and I figured I could just shuffle along behind her, pushing my wheelchair, and sitting in it when I got tired.  We ended up staying for six hours.  Most of my art knowledge comes from the board game "Masterpiece" that we had as kids in the 70's, and virtually every one of the pictures in that game are from the AIC.  Jennifer seemed to enjoy looking at the collections (especially the Impressionists, American Folk Art, the Western American/Native Indian collections, and some of the 20th Century American artists).  She was content to let me slumber in my wheelchair, coming over every now and then to wipe the drool off my chin and change my diaper.  Happy Mother's Day, dear!

We returned home to find that my incision appeared to be getting infected.  It was getting increasingly red and sore.  No fever or other symptoms were present, but we called it in, and the urologist on call prescribed an antibiotic.  We also succeeded in completely flushing both drain lines, so that for the first time since I was discharged, both bags are filling at the same rate.  We are much relieved see that. 

We then settled in to watch the Caps lose to the Rangers in game 7, while chatting with Brother Philip, one of the friars who teaches Latin and theology at the all-male Catholic St. Rita's High School.  We learned more about the Augustinian Order, how it was supported by donations from other Catholic organizations, and how Friars differed from monks in that Friars were outward facing and focused upon serving the larger community, whereas most monks are inward facing within their own community.  One of the other Friars teaches at the Catholic Theological Union across the street, which offers Master's level courses to about 300 students, about half ordained priests (obviously male), and the rest lay students (mostly female).  The students who live at the Friary are studying at CTU.  We inquired how we might make a contribution in gratitude of their hospitality, and was politely but firmly rebuffed.  I am so impressed with the quiet service that these good men provide to the community. 

Mets day 29 - MSI

After another night that started in my bed and ended on the Friary's basement reclining couch, I felt well enough (and stir-crazy enough) to venture with Jennifer to the Museum of Science and Industry.  It was only three blocks away, and had been a place I'd wanted to visit since the 70's, when I learned that it had an actual German WWII U-boat (I've always been interested in WWII).  The MSI calls itself the largest science center in the Western hemisphere, and sprawls over 400,000 square feet.  We rented a wheelchair, which I mostly pushed like a big walker, but occasionally sat in when I needed a break.  We spent about five hours at the MSI, along with scads of schoolkids.  We spent the most time exploring the U-505, which I very much enjoyed. In 2004, the MSI built a new underground display area for the U-boat, with a long ramped walkway around it, and neat displays.  Volunteer interpreters included former US submariners, who were happy to discuss arcane aspects of WWII sub technology and strategies. 

We also checked out an exhibition called "You", which included a number of dissected human bodies, preserved in the same way that the "Bodies" exhibitions do it.  We examined the bladder and prostate in those exhibits, saw how long my kidney stents had to travel (no wonder taking them out hurt so much!), and tried to figure out exactly which section of the colon was used to build my neobladder.  It is amazing what was done to me last week, and that I am already up and moving relatively well. 

Some of MSI's other displays of air and space travel were interesting, but I guess I'm a little spoiled living in the DC area and having the Smithsonian in my back yard.  At about 3 pm, I decided that I had leaked enough urine from around my SPT, and that my stitched-together abdomen had enough movement, so we headed back to the Friary for an afternoon nap.  All in all, an adventurous but good day. 

Still no word on the pathology.  I'm assuming we'll find out during Tuesday's appointment. 

Mets Day 28 - Baby Steps

Last night I turned out the light in my bedroom at about 10 pm and, after gingerly trying to find a comfortable position, fell asleep for a couple of hours.  I woke up at 12:50 am, checked and changed my SPT dressing, took a couple of pain pills, then looked at my flat bed with dismay.  It just didn't look comfortable.  One of the benefits of staying at the Friary is that there is a common room in the basement with recliner couches, so I made my way down there, guided by my iPhone flashlight and carrying a blanket, and made a comfortable nest.  I put in my ear buds, selected the New Age genre, and ended up sleeping for nearly six hours.  A good night's rest makes all the difference.  I've still got a significant sleep deficit to make up, but last night was a very good start.
 This morning, Jennifer and I did the mucus flush.  Much to our surprise and relief, we extracted a large volume of  mucus from the neobladder, and had good cross-flows between the two tubes.  We were so excited that we saved it to show the home health nurse, who made her first visit today.  We were like little kids at show and tell, beaming while she held up and examined the nasty, viscous, bloody mess, then praising us for doing so well.  I even got a gold star.

After we relieved the nurse of several bags of supplies, we walked down Cornell Avenue to 55th, and had lunch at at great Thai restaurant called The Snail, where Jennifer and I shared an appetizer and entree.  As we slowly ambled back to the Friary, I could feel a nap coming on.  I changed from the thigh bags to the large drainage bags, then slept for an hour in an Ikea-style chair and ottoman.  I have a feeling that I will be taking lots of afternoon naps during this recovery.  Each day is a baby step forward, and I'm grateful to have Jennifer here and providing so much comfort and support. 

We have purchased return tickets for Wednesday, May 16 on the tentative expectation that I will be cleared for travel after next Tuesday's appointment with Dr. Steinberg.  The tickets are on Southwest, so if they need to be changed, there is no penalty.  The Friary is wonderful, but I'm looking forward to convalescing at home. 

Mets Day 27 - bad mucus

While we await the pathology results that will let us better understand how metastasized the cancer was, I continue to deal with the cascade of consequences of having the bladder removed and a neobladder created out of a chunk of my small intestine.  The doctors did not actually remove the small intestine, because doing so would have required them to have severed all of the blood supply lines, nerves, and other connections that kept that tissue alive.  Instead, they took a piece that was immediately above the bowel, cut off each end (and reconnected my now-smaller intestine), then fashioned a neobladder in a funnel-shaped pouch, topped off with a Z-like structure.  The ureters from my kidneys were connected at the top of the Z, and the output to urethra is at the bottom of the funnel. 

The trick is teaching the new bladder to act like a urine pouch instead of a bowel.  That part of the intestine likes to produce a lot of mucus, which binds with solid waste to create feces.  Now, however, there is no solid waste in the urine, and so the neobladder creates lots of mucus with nothing to do.  Too much mucus clogs the drain lines, keeping the urine from escaping.  That's bad because an overfull neobladder can rupture, or urine can back into my kidneys and cause sepsis. 

One of my jobs over the next few months is to teach my neobladder to make less mucus.  I currently have two tubes out of the neobladder - a Foley catheter, and a suprapubic tube.  Both are connected to external drain bags.  In plumbing terms, it's a bag with two exit pipes.  At least three times a day, Jennifer and I disconnect those drain bags and use a 60 cc syringe to flush the tubes with saline to keep the pipes clean.  In theory, this saline flush pushes the mucus out the other tube.  You're also supposed to be able to draw the syringe back after each flush, and suck mucus out of the neobladder.  We practiced it several times in the hospital, and were comfortable with doing it ourselves upon discharge. 

Yesterday afternoon, about 2 hours after discharge, the Foley catheter was blocked by mucus, and we could not draw back or get it dislodged.  We went back into the hospital, where the doctor and LPN and nurse all worked on it and could not clear it.  They said to wait, since these things typically cleared up with time.  Plus, the SPT was fully functional, and that was my "lifeline."  As long as that flushed and drained, they said, I had nothing to worry about. 

This morning, my SPT clogged up.  We could neither flush nor drain either tube.  I was pretty worried, and after an unsuccessful phone consultation, we went back to the hospital.  Of course, by the time that the doctor came in to see us, the blockage had partially resolved itself, and she was able to flush up one tube and see discharge from another tube.  She was not able to draw back from either line, however, indicating that there still was mucus adjacent to the drain points.  She said that we should continue to flush at least 3 times a day, and as long as there was drainage, all was well. 

So we closely watch the output, flush often, and hope we don't get clogged up with that unneeded mucus.  I still have leakage from where my SPT tube exits my abdomen, so I have joined the wonderful world of Depends wearers (and I'm not even 50!)  I thought it funny that each package of Depends contains a free membership to AARP.  I'm not ready for that.  Plus, I don't like eating dinner at 4 pm. 

As for other physical aspects of my recovery, I seem to be slowly progressing.  The pain is slowly receding, but it can surge back unexpectedly quickly.  I can twist my torso (albeit slowly), and can get up from seats unaided.  I'm not able to do situps yet (not that I've tried), but can gently roll over in bed.  Jennifer and I just got back from a walk around in Hyde Park, which was the first time I've spend any time outside since the surgery.  Going for walks is easier to do while wearing the urine bags that strap on the thigh, instead of the huge ones that are the size of dinner plates.  The doctors emphasized that I was not sick, but was an otherwise healthy man (well, except for that cancer thing) who was recovering from major surgery.  They encouraged me to gradually increase my physical activity and stamina.  One day at a time. 

Mets Day 26 (cont'd) - Discharged

Today has been an exhausting but good day.  The pain-filled overnight did not lend itself to a restful night.  But the doctors were intent on being rid of me today. 

This morning a member of Dr. Steinberg's team removed my abdominal drain tube by snipping a suture and pulling out more than two feet of tubing that had been snaked around my abdomen.  It really wasn't painful, just weird to feel something bumping by everything in my gut. 

The pain was reserved for the next step:  removing the two stents from my kidneys.  During surgery last Wednesday, Dr. Steinberg snaked very small plastic stents enclosed in tubes and connected with a wire through my newly-created neobladder, into my ureters, and up to my kidneys, where he stitched the stents to the kidneys with dissoluble sutures.  Each stent line was more than three feet long.  In theory, the sutures had dissolved, so to remove them, one just had to pull on the connecting wire and withdraw the tubing.  In fact, it took quite a few yanks to persuade the sutures to release from the kidneys.  With each yank, my kidney was being internally pulled down -- an incredibly painful experience.  Once the stent released from the kidney, it dragged along the ureter, then through the neobladder, through zigs and zags.  Picture pulling a garden hose that is wound around a number of trees and bushes.  The stent is the garden hose; each tree and bush is a curve in part of my kidney, ureter, or newly-created neobladder, each with nerves on full alert.  It was quite painful.  After the first stent was out and several unsuccessful yanks on the second one, I explained to the doctor that, without morphine, I was not going to let him have any more fun.  That made the rest of the procedure more bearable, but also wiped me out for several hours.  I did manage to thank the doctor, and told him that Guantanamo Bay needed his skills. 

The nurse who was assisting - a mother in her 50's - compared having those stents removed to childbirth.  I certainly was using the Lamaze breathing that I had coached Jennifer with so many years ago.  Jennifer, fortunately, did not have to witness my giving birth to a pair of wiry twins, as all this was done before she came over to the hospital. 

After several hours of recovery, we met with the LPN, who made the follow-up appointment for next Tuesday at 11:15 am, where I hopefully will have the foley catheter removed.  She also gave us written  discharge instructions and learned all about neobladders.  I hope Jennifer remembers what was said.  I don't, and have not read the discharge instructions.  We did receive prescriptions for pain-killers, which will be essential for the next few weeks. 

The nurses then bundled us up with all our stuff, and we were out of there.  Two hours later, we were back.  My foley catheter has already become clogged, and was not draining.  The resident on staff, along with the LPN and nurse, fiddled with it, tried to flush it, then said to not worry about it - the SPT was working, and that's what really mattered.  I was neither comforted or convinced, but they said that it likely would resolve itself soon. 

So now we are ensconced at St. Augustine's Friary Guest House.  The monks and students are so very gentle and genuine.  They repeatedly have asked us to stay for the duration, as they have no other guests scheduled or need for the rooms.  We've decided to do so, and Jennifer just finished unpacking all my stuff.  We actually have adjoining rooms, which will let me sleep at whatever times I can, and not requiring Jennifer to tip-toe around the room.  I am most grateful for this unexpected blessing.  God works in mysterious ways, and most often through the better angels of human nature. 

Mets day 26 - Pain

Jennifer left the hospital at about 9:30 pm last night. My recovery from the surgery had so far feel very good, and it appeared that I would be discharged ahead of schedule. We were looking forward to Tuesday: I would have my stents and abdominal drain removed, and I would be released to a quiet and calm place and get some rest. I was told to expect a blood draw between 10 pm and midnight, and vitals check every 4 hours. There was nothing worth watching on the tv, so I shut down the lights and tried to doze.

At 10:30 pm, I started to adjust the position of my bed and immediately felt an excruciating pain shooting from my central incision, across the incision point for the SPT tube, and ending on my left side. It was like several thousand volts of electrical current was constantly passing through that part of my body. (I've been shocked several times by 120 volts, and this was far more intense and constant). The pain was sudden, intense, and unexpected. I fumbled in the darkness for the nurse call button and yelled at the answering station to send him in immediately. I continued to writhe in agony, moaning and twisting my torso to try to escape. When my nurse did not appear after what I deemed a sufficient time (it felt like 5 minutes but was probably closer to 30 seconds) I punched the call button again and said I was at 9 or 10 on the pain scale, and needed relief immediately.

Rafael, my nurse for the night, came in soon thereafter and tried to assess what was going on. It's hard to communicate cogently when you are constantly groaning, writhing, you are sweating profusely from every pore, your teeth are chattering, and you feel that you are tied to the tracks and all you can see is the oncoming glare of the train of pain. Under the circumstances, I think I did quite well, explaining in short, simple words and at a volume that would not be mistaken for a whisper that I needed an immediate shot of something - anything - to make the pain go away. Raphael seemed to be concerned with other unimportant things, like trying to find out what was causing the pain, and whether he could use my port to give me a shot. I argued somewhat passionately that all of those things were secondary to getting me some immediate relief. Eventually, Rafael and I reached an understanding, and he gave me an elephantine shot of morphine through my port, as well as my regular two Vicodin pills.

Those 15 minutes of so between the initial attack and the morphine dulling my senses have given me a totally new perspective on pain. From time to time in my life, I have felt intense physical pain - when I broke my leg on my motorcycle at age 18, or shredded my left ankle at age 14 when a bunch of barbed wire wrapped around my ATV foot peg and ankle. But I generally have avoided taking pain medications, such as Tylenol or Advil, since I generally have not needed them. But now, having had every fiber of my being racked with such intense pain that I could think of nothing other than escaping it, even if it meant dying, I now respect and fear pain in a way that I never did before.

I'm still processing what it means to me, and how it will change my life. Having felt what that unknown thing can do to me, I fear what I would do, or what my family would do, should it happen again. I talked with Rafael abut it at 4:30 am, when it was time for my next round of Vicodin. I wanted to stay ahead of the pain, but I did not want to risk addiction to pain meds. Raphael sensibly counseled me to take the damn pills and worry about the future later. The doctors, by the way, treated it as no big deal during their morning rounds, and assured my that it probably would not happen again. Yeah, right. They don't even know what caused it.

Mets Day 25 - Monday morning rounds

Chelsea and Jennifer came over at about 6 am to meet with the doctors doing their morning rounds.  We did not know when they would make their appearance - last Thursday at Friday it was around 6 am, but on the weekends it slipped to 7:30 or 8 am.  I warned Chelsea in advance that the rounds were not about the patient, but about the doctors.  They rarely would ask the patient questions, but would instead review the charts, speak among themselves in the hallway, then enter the room, announce the day's orders, and leave.  Questions were barely tolerated by one doctor standing in the doorway, his colleagues having moved on to the next patent's room. 

Fortunately, today's rounds were a little better.  They were led by a 6th year resident who also participated in the surgery.  With him was the only female resident that I've seen on the urology on the staff, who efficiently flushed the neobladder and foley and freed up a blockage in the foley that had been there for at least a day.  They were more responsive to  questions, but proceeded as was usual - announcing the treatment plan, and answering limited questions.  They said that they had to keep on schedule, and one would return later to answer additional questions. 

As for the substance:

1. I am now on an unrestricted diet.  They encouraged me to go gently at first, and let my GI system get back up to speed.  The neobladder handout that the hospital provides is rather funny - it recommends that patients avoid high-fiber foods and whole grains, and instead have easy to digest food like pies and cookies.  I can do this, I thought.  I've been practicing for years.

2.  Assuming that I continue to make good progress, tomorrow the doctors will remove the two stents into my ureters, as well as the JP abdominal drain.  I likely will be discharged tomorrow afternoon, with the SPT and foley still in place.  I'll receive in-hotel health care, and likely would be scheduled for a clinic appointment on Tuesday, May 15.  If everything looks good, I could be cleared to return home to DC on Wednesday May 16, where I would continue my recovery and physical therapy. 

3.  I finally have been unhooked from the IV pump.  Happy day.  They used my port for most of the infusions, but did blood draws the old-fashioned way, and my arms look like a heroin addict at death's door. 

4.  We spoke at length about managing the balance between diarrhea and constipation.  This morning at around 5:30 am, I was sitting on the toilet, full of gas, but afraid to bear down and push. I had been warned not to do so, because bearing down on a still-healing neobladder could cause some damage.  It took about 20 painful minutes for the intense gas pressures to dissipate without pushing, accompanied by rocking, sweating and trembling.  I didn't want to go through that on a regular basis.  The doctors generally were pleased to hear that the GI tract was producing gas, and approved my using MiraLax to stay regular, and see how it goes. 

5.  I can expect to have additional leakage from the SPT tube as long as it is in place.  It can be packed with dressings to catch the leaking urine, but nothing will be 100%.  Jennifer will be trained on changing the dressings, and I will be modeling the latest versions of Depends.  I was also warned that, after all the tubes are removed, I'll still need De[ends as I learn how to pee again.  I'll have Jennifer talk to my mom to find out what incentives worked for me the last time I was potty trained. 

Chelsea had a lot of questions, and helped focus the treatment and plan.  She is flying back to DC this afternoon.  We've been grateful for her assistance and knowledge.  Jennifer will stay out here for the duration.  We probably won't have Spencer come out because everything is going faster than anticipated.

As for the cancer that caused this stay in the Windy City?  We have not yet received the pathology report, but hope to see it today or tomorrow.  Fingers and toes still crossed for a favorable report. 

Mets Day 24 (cont'd) - feeling grumpy

To quote from Finding Nemo, I am Mr. Grumpy Gills.  I am tired of sticks (11 and counting today), tired of urine leaking from my tubes (7 different reconstructions of my various dressings today), tired of IV infusions (I've had a continuous drip since Wednesday; today I had multiple bags, pus a blood transfusion since my red blood cell counts were not coming up); tired of my bowels learning how to function again (sudden and painful rounds of gas followed by loose and icky diarrhea).  Plus I've had nothing resembling a decent sleep for days.  At about 3 pm I ceased having any pretences, and telling everyone how I felt and thought with no tact or consideration.  Jennifer and Chelsea wisely left at about 5 pm.  I know that I need to do better, and be a better person.  But I'm still grumpy. 

As of this morning, I've been taken off the morphine IV pump, and switched over to Vicodin.  It's working as well, if not better, to control the pain.  I do miss my abdominal muscles.  Sitting up in bed is nearly impossible.  I need to slowly raise up the bed, then still need to roll on my side and grab the hand rails to reach anything approximating a sitting position. 

This afternoon, one of the residents came in and give me a local anesthetic, then gave me a couple of stitches around the SPT drain.  It had been leaking profusely.  Now it only leaks a lot.  The scar is going to be ugly, too. 

The beef and chicken broth at this place is way too salty, and tastes nasty.  All I can stomach is the jello.  Maybe tomorrow I can get some real food.  Maybe one of the reasons that I am grumpy is because I miss real food.  Maybe it's because I've been eviscerated.  Maybe it's because I still don't know if I've got cancer.  There's so many reasons to be grumpy, so why stop at one?

I know that this too will pass, and that I'll feel better when I feel better.  The tautology is deliberate.  I am choosing to feel grumpy, and when I get tired of it, I'll choose to feel differently. 

Ok, Jennifer and Chelsea just got back, so now I'm going to visit with them.  This vent is now closed. 

Mets Day 24 (cont'd) - discharge on Tuesday?

The doctors just completed their rounds. Steinberg's chief resident told me the following:
1. He's approving me for clear liquids, such as jello and chicken broth. He'll probably change it to an unrestricted diet on Monday.
2. The fact that I drank so much water yesterday, and kept it down with no discomfort, helped to persuade him to bring me along faster than he might otherwise do.
3. My neobladder has relatively little mucus in it, which is good. It will continue to produce mucus for a long time; I just need to be aware of it and make sure I don't get plugged up.
4. My red blood cell counts have been dropping since the surgery - they now are below 7, which is his threshold for concn. He's going to order a transfusion. He suspects that I need the blood to the replace that lost during surgery, and to address the ongoing bleeding in my JP tube. I have an impressive clot it my JP tube, too.
5. He wants to remove the JP tube prior to discharge.
6 Assuming that I handle the solids well and the he is able to remove the JP tube, it is likely that I will be discharged on Tuesday.
7. I will not be cleared to travel after discharge, however, and will still have the SPT an Foley in place. I'll be staying locally - either at the Friary or the Westin - until I am cleared to travel. Before that happens, I would need to comeback in to the hospital for the removal of the catheter, then waiting to confirm that I am able to pee somewhat normally. I'll have the SPT in place, but available both as an emergency backup and as a way of flushing to neobladder. Maybe I will be able to return hom by the end of next week, like the 19th or 20th.
Only six days from surgery to discharge - that's fast! But I'm not complaining.
Ok, time to order my jello. Citris or berry?

Mets Day 24 - what is real?

Shortly after I finished my last blog post, Jennifer observed how I seems to be out of gas and said that they would leave to find some dinner, then go to sleep. After 15 or so minutes, I roused myself sufficiently to resond, but they were already gone. It was the beginning of a strange 12 hour period. It is 6:15 am Sunday morning as I type this. The hour, plus the morphine, may make this a surreal read. Bear with me.

After Jennifer and Chelsea left, I shut off the lights, adjusted the bed to the least uncomfortable position, and tried to sleep. Looking back on it, I realized that I had entered a strange zone of drug-induced exhaustion. I remember at some point a nurse entering to change all of my dressings, including converting all of my dressings around my SPT tube to a type of colostomy bag. At around 2 am, a nurse's aide entered to empty mt various bags and grenades, and it did not register on me to wonder why my Hospital gown was pulled up to my chest. I guess I was hot? Looking back on it now, I am still surprised that this was in no way abnormal. I remember having the blindingly clear insight that I was in a state of consciousness that perhaps could only be replicated by being made to watch many hours of daytime television - it was either soap operas or Regis and Kathy Lee. I remember being glad that the Geneva Convention prohibited such state action, but then I realized that the University of Chicago was a private school, and probably immune from the Geneva Convention.

Working through that little conundrum took at least an hour. At about 3:30 am, I decided that it would be a good thing to walk around and pass some gas. I stood up and felt a rush of urine running down my legs. It took me some time to realize that this was neither normal, nor good. I called for the nurse to change my dressings, and proceeded to take off my hospital robe and shuffle over to the toilet, where the nurse found me some time later. Apparently I had left an impressive trail from the bed to the bathroom. In my altered state of consciousness, I was not sure if my nurse actually was a prison guard - a perception enhanced by my trying the explain that I intended to go for a walk, and the nurses's aide shaking her head as if to say, "you're not going anywhere without my permission, bub." Add to the background mix the occasional moaning of a nearby patient with serious dementia, and I was increasingly less certain of where or when I was at. I can see how easy it could be to use sleep deprivation and drugs like morphine to create an utterly convincing alternate state of reality.

Eventually I was sufficiently cleaned up so I could go on my stroll. I have succeeded in passing gas several times, to my great delight and relief. I've been told that the doctors on their morning rounds likely will authorize an unrestricted diet. Assuming I'm really not in a altered state being compelled to watch bad daytime tv (redundant, I know it), then I can look forward to some real food.

Mets Day 23 - BCAN walk, and more

Today was BCAN's annual fundraiser walk.  We had 27 people attend the walk on my behalf on the National Mall.  Following is a photo of the combined "Team KBros and Team Brothers":

Thank you to all who participated, or walked in in your hometown communities, or thought of me as you traveled today.  In addition, thank you to all who made donations - I think we are approaching $10,000 in donations to help find a cure for bladder cancer.  Yay!

Today I received a beautiful bouquet of flowers from the my friends in the IP group.  Here's a picture:

(the flowers are on the left)

Jennifer points out that my hair is getting shaggy, so we have arranged for a barber to come to the hospital.  My first post-chemo haircut!  I've noticed that I lost about 50% of my hair, but that which remained got thicker and curlier.  So it looks like I didn't lose any hair, but in fact I did. 

I notice I'm still under the influence of morphine as I type. 

Jennifer I carefully taking pictures of balloon and flower bouquets, and of me and Chelsea.  I'm glad that she is enjoying it.

Momentous news!  I just farted!  I need to update my FB status page (If only I had one to post.).  This really is a big deal for a radical cystectomy patient with a neobladder.  It tell me that my colon and small intestine was properly severed and stitched together, and it that my GI system has now fully awoken from surgery.  I called to nurse on the call butt an an proudly announced my feat, and I heard laughter on the background.  Hey, life is to short for formalities. 

I'm told that, now that I'm running with the wind, so to speak, that I can actually look forward to eating food.  Earlier today one of the nursing erroneously told me that I could order jello and broth from the kitchen, and brought me a full pitcher of ice water, which I promptly drank.  When I tried to order the jello, I was told that I was still on a "nothing by mouth" diet.  The nursing aide was so embarrassed that he avoided us for the rest of the day.  We questioned the doctor on the the possible side effects, and were told that a worst case scenario is that I might vomit the water.  But since it hadn't happened, I needn't worry about it.  Maybe no I can eat really food for dinner!

Jennifer observed that I must be tired.  I head was nodding off over the laptop, and I would go for some time with zero action.  Yes, I'm tired.  Hospitals are not restful places.  Both of my arms are impressively bruised from repeated needle sticks and probes.  To sleep an uninterrupted night . . . it might be a long while before that happens . . .

Mets Day 22 - more incoherence from Ken

When the cats are away eating (Giordano's!) I can sneak on the blog and do another update.  I've been staying off the morphine (relatively speaking), but I'm still TUI (Typing under the influence).  I went on a couple of more walks, followed by deeply satisfying naps.  Today the nurses removed my dressing over the primary incision.  It looks like someone had a good time with a staple gun.  Strangely enough, I'm not feeling too much pain from the incision, even though it runs from the base of my penis to my naval.  I am very gently when I am sitting up and sitting back down.  Sudden movements are not my friend.

The dressings around the abdominal drain and SPT were also changed twice today.  This afternoon the flow had much less blood in it, and more clear stuff.  It's a good sign that my kidneys are coming bck on line.  Hopefully, bowel function soon will follow. 

I'm still not permitted anything orally.  I sneak a little ice in here and there, but I have surprisingly little appetite.  Another neobladder patient told me that he lost 28 pounds during his recovery - he was disappointed that he gained most of it back.  As long as I'm not uncomfortable, then that's ok with me.

Today we received a balloon bouquet from our friends, Bill and Bernice Pine.  Here's a picture:

Bernice is helping coordinate tomorrow's BCAN walk, along with Kim Parke.  Send pictires for posting here!  I'm told that Kim has created a DS-based website on my behalf that has over $7500 in donations.  That, combined with my family-based donation site, will be approaching $9000 in donations!  Thank you! 

All Quiet on the Western Front

Chelsea here!  The recovery so far has been smooth sailing.  Ken drifts in and out of consciousness, waking up for 1-2 minutes at a time before drifting back off into morphineland.  He's been able to get up and go on a total of 4 walks so far since the surgery, some of them up to 20 minutes long!  He has four drainage tubes that get emptied every hour or so, and the nurses come in every two hours to take his vitals.  Fortunately the night nurse has a gentle enough touch that he didn't even get woken up last night when she came in.  He also has leg squeezers, which are cuffs around the calf that automatically inflate and deflate, to help the blood circulate to reduce the risk of clots.  He also uses a "puffer," which is a little plastic tube that he takes very deep breaths in and out of, 10x an hour, to help his lungs expand all the way to reduce the risk of pneumonia.  Jennifer gives Ken a full sponge bath and a long massage each day, as the nurses drool with envy.

The hospital room is looking nice - Jennifer hung up a large family photo and other homey touches.  It's a private room with two large windows.  I bought a "Get Well Dad" balloon (though I was pretty close to buying one that said "It's a Boy!!!"), and Levi (a friend in Chicago, son of Ken's close friends from law school) brought over some flowers.  If you want to send something, here is the info about the hospital's gift shop; you can text Jennifer or me for Ken's room number:

Delivery to patient rooms is available for purchases of more than $5.00. If you would like to send a gift from the Mitchell lobby gift shop, please call (773) 834-1360, Monday through Friday 7 a.m. to 9 p.m., Saturday and Sunday 8 a.m. to 9 p.m. Central time zone. The gift shop accepts MasterCard, Visa, and American Express for phone transactions. Callers must have all patient information, including first and last name and room number, before an order can be placed.

The room was really, really hot when we first got here - 84 degrees!  They cranked the thermostat all the way down, and called maintenance (who arrived 12 hours later).  Maintenance checked the thermostat, and then the guy pulled this little walkie-talkie-looking device with a laser beam on it out of his pocket and pointed it at the ceiling.  He said he could use it to detect heat coming from the ceiling.  I wondered if he had been sneaking some of dad's morphine drip.  But the room cooled off eventually.

The staff here is excellent.  Dad's day nurse, Kelly, is fantastic and very responsive.  We've also met the social worker, the case manager, and several other nurses.  The doctor has come by to check in as well. Everything seems to be going great - thank you for all your continued support.

Mets day 21 - Ken's incoherent post-surgical ramblings

Ken here.  Jennifer and Chelsea are eating dinner with the monks.  I can take nothing orally until the bowel wakes up - typically 4 or 5 days.  I don't have much of an appetite, so it's no bid deal   .  I am getting a continuous saline drip, and also have an on-demand morphine push.  The side effects of that morphine is that my blinking of the eyes can talk about 10-15 minutes.  I'll be talking with Jennifer or Chelsea, and will just zone out.  Or I'll be on the phone with my mom or another relative, and will have no recollection of what we were just speaking about.  Typing this blog is interesting - every third word is misspelled.  And just now I closed my eye, and then jolted them open about ten minutes later. 

Dr. Steinberg came by today and said he did an extensive lymphanadectomy, taking out as many as he could access.  He said that some were enlarged, but did not have the characteristics of metastasizing.  So much tissue was taken out that preparing the report will take several days.  That pathology report will be helpful in determining my future prognosis and treatment.

I have 4 tubes coming out of my body. First is an abdominal drain, which the nurses call a grenade, due to its shape.  Second is a pair of stents connecting the ureters from the kidneys directly into a large drain bag.  Third is the foley catheter through the penis and into the neobladder, collecting into its own bag.  Fourth is the SPT, or suprapubic tube, also going into its own bag.  It makes taking a walk is bit of a challenged.  I hang all the bags onto the wheeled IV pump tower, which also has the on-demand morphine drip.  I went on two walks today - the first was a leisurely stroll of about 30 feet outside of my room, closely followed by my nurse who was worried I might capsize.  I returned a took a well-earned hour long nap, after I stopped shaking from exhaustion.  About an hour ago, I managed a 20-25 minute walk with Chelsea and Jennifer. I'm told that I need to go on as many walks as possible.  Walks help avoid deep vein thrombosis, stimulate bowel functions, and speed the recovery.

Wow, it's a real pain trying to type this when my eyes keep unexpectedly keep slamming shut.  

The doctors are still saying that I can expect to be released in about 7 days.  I'll likely stay in the area for another week to 10 days, until I'm cleared to travel.  We may have Spencer come out after I'm discharged.  We're remaining flexible - one day at a time.

Surgery is over!

Jennifer here again.  Dr. Steinberg just came from the OR to talk with Chelsea and me in the Surgery Waiting Room.  He said that the surgery went well, that the bladder, prostate and lymph nodes are out, and that the neobladder has been constructed.  Ken didn't need any blood transfusions during the surgery, though occasionally patients will need them in the few days afterward, depending on how everything heals up - nothing to worry about.  He also said that although there were several enlarged lymph nodes, none of them actually looked too worrisome, yay!  Even though on the CT scan the lymph nodes looked enlarged, he said cancerous lymph nodes (and even those affected by chemo) often "stick" to the blood vessels around them, but Ken's didn't, which is a good sign.  We'll have to wait for the pathology reports to know for sure.  They dissected out the lymph nodes from the pelvis all the way up to above the bifurcation of the aorta, on both sides, and Dr. Steinberg's not sure exactly how many they took out.  We'll have to wait for the pathology to learn what all was involved, but unfortunately the pathologists here work at a snail's pace - it will probably be a week or more before we find out.  When Chelsea asked if it looked like the prostate was involved, Dr. Steinberg said he didn't see any visual evidence of that, and that the prostate wasn't enlarged.  He said he was able to spare the nerves as well, yay!  Chelsea asked some more technical questions about the neobladder, learning that they use part of the ileum up until about 15 cm proximal to the ileocecal junction, to preserve B12 absorption capability; they keep the original blood supply.  Now, we move on to waiting for the pathology results - deja vu.  Ken will be in the recovery room for a couple of hours . . . more waiting (are we there yet?!? are we there yet?!?) and then we'll get to see him!

From the Surgery Waiting Room

This is Jennifer - Ken asked me to let you all know what's going on here.  Chelsea and I are in the University of Chicago Medical Center's very comfortable surgery waiting room.  After we spent an extended time with him in pre-op, they took him back to the OR at about 11:30am Chicago time, and the surgery will go on for several hours, depending on how things go.  That's what we've been learning throughout this bladder cancer journey - how things go (or don't) indicates the next right (or hopefully right) thing to do.  Prior to this major surgery, Ken was his usual optimistic, humorous self, feeling ready to get going on surgery so he could recover and dive into a steak dinner as soon as possible.  Lessons in patience for all involved!  We'll keep posting updates, so stay tuned.  Meanwhile, when we're not at the hospital, Chelsea and I are staying nearby at the St. Augustine Friary, whose resident monks have already shown us such remarkable hospitality that I'm certain we're in the right place at the right time - a peaceful haven in the midst of such challenging times for our family.

Breaking news: one of the OR nurses just called to inform us that Dr. Steinberg says everything is going well.  He's got Ken's bladder out and is now starting the reconstruction.  Bye, bye bladder - hello extreme potty-training!  I'm thinking that Ken will appreciate my attempts at humor - hey, just tryin' to do my job here . . .

Mets Day 20 - Pre-op

I'm sitting in the University of Chicago hospital's pre-op waiting room.  Jennifer and Chelsea are here with me.  I'm feeling calm and just a bit impatient; I don't like waiting.  I'm not nervous or scared; I have confidence in our decisions and the health care professionals who are responsible for my care.  

Yesterday, we met with Dr. Steinberg, and we both really liked him.  He said he would carefully examine my lymph nodes for cancer, and would have real-time pathology done on any that appeared suspicious.  He also said that he would do an extensive lymphadenectomy, following the common iliac upwards to remove the nodes in the pelvis and into the abdomen.  We also discussed the pros and cons of a neobladder vs. an ileal conduit.  A neobladder has a longer recovery time, and greater risk of complications.  An ilean conduit to an external bag is a faster recovery.  We all agree that a neobladder is the way to go, with two qualifications:  (1) if there is cancer in the urethra, then a neobladder cannot be constructed; (2) if the cancer appears to be systemic, then we decided that an ileal conduit was probably better, because the recovery is much faster, and I'll likely be dead soon anyway.  I don't want to spend my last few months fussing with a neobladder.  We agreed to let it be his call during surgery.  He strongly prefers neobladders, and said he almost feels personally insulted if his patients are not continent.  But he stressed (and we agree) that the number one concern is getting me cancer-free.  Everything else is secondary. 

The surgery will start at about 10 am CT, and will last between 4-6 hours.  Jennifer and Chelsea will be posting updates this afternoon and over the next few days.  We have been grateful for the silent prayers of support and thoughts of all of you, as well as all of the emails and texts and calls of support; please understand if we do not respond. 

Last night we stayed at the St. Augustine Friary guest house.  It is a 15 room guest house in Hyde Park, with three rooms occupied by monks, and six occupied by students at the Chicago Theological Institute.  They have a group dinner each evening (last night was ribs; alas, I could not partake due to the surgery requirements).  The other six rooms are for visitors.  It is a wonderful, calm, quiet place.  Jennifer loves it, which helps me feel good about her stay here. 

Time to go to pre-op.  See you on the other side. 

Mets Day 19 - Why I Believe

I have received a number of  emails from my friends and colleagues who are of different religious faiths who have expressed admiration at how I have been sustained by my faith.  On the evening before my surgery, permit me to share my thoughts on why I believe as I do.

My mother was born in Holland in 1934, the sixth of seven children. Her mother was an indomitable woman who was unafraid to challenge the teachings of the Dutch Reformed Church.  In particular, she challenged the priests on the doctrine of original sin, refusing to accept that her babies were born into a state of sin.  She eventually refused to have her three youngest babies -- including my mother -- baptized, even though the priests warned her that she was condemning her children's should to everlasting torment should the die without baptism.  For years, my grandmother prayed that one day, she might find a church whose teachings were more enlightened.

After World War II ended, a retired couple from Ogden, Utah, volunteered to serve as missionaries for their church -- the Church of Jesus Christ of Latter-day Saints.  They were sent to Holland, where in 1947 they knocked on the door of the Beuk family in Hilversum.  My grandmother challenged them on their church's teachings on original sin, and learned that the Mormons believed that each person is held accountable for their own actions, and not for Adam's transgression and fall from grace.  Having passed that screening test, the missionaries stayed at the Beuk home for hours, teaching my grandmother, then repeating the lessons as each family member returned home from school or work.  My grandmother was not an easy sale, however, and spent more than a year investigating every aspect of the Mormon belief system.  The original missionaries who made that first contact eventually went home, never having baptized a single person while on their mission. Other missionaries came and continued teaching the Beuk family; I am named after Kenneth Bacon, one of those missionaries.  In 1948, my grandmother, mother, and aunt were baptized into the Mormon church.  Over the next two years, the rest of my mom's family joined the church.  Were it not for the Mormons, I'd be speaking Dutch today. 

In 1951, my mother's family emigrated to the U.S., taking a ship to New York, and a Greyhound bus to Utah, where they settled in Salt Lake City. My mother met my father and were married in 1953. My father eventually left my mother and the church, leaving her to raise her three children as a single parent.  Her faith never wavered, however.  

I was born in 1962, and was taught the gospel by my mother and in Sunday School.  I grew up on a small farm in the mountains of Utah, five miles from a town of 500.  One of the interesting aspects of the Mormon belief system is that each person is encouraged to develop his or her own independent faith -- to study the church teachings, pray about them, and to decide whether or not you believed them and were willing to accept them.  No one should rely on borrowed light, we were told.  Only you can decide what is true for you.  My mother encouraged me to investigate and to decide for myself whether those things were good and true.  This has lead to a lifetime of critical examination and reflection, and the development of a core set of spiritual beliefs.

When I was 18, I was attending the University of Utah, and enjoying the independence from home.  Every other weekend or so I would drive 50 miles north to my home with a load of dirty laundry and attend church with my mom.  In the Spring of 1981, a high school senior named Jennifer Marberger asked me to a school dance, and we started dating.  A few weeks later, I broke my leg while riding my motorcycle, and had to withdraw from many of my college classes and return home to recuperate. Jennifer came over each day after school, and we had a number of intense discussions about religion and everything else under the sun.  We pushed and challenged each other on all aspects of our beliefs.  In large part as a result of those discussions, two weeks after my last cast was removed, I volunteered to serve a mission for the LDS Church, and was sent to South Bronx.  My spiritual understandings and depth of my personal convictions were greatly strengthened as a result of that missionary service.  (Jennifer went to BYU, waited for me to return, and we were married in October 1983).

I have spent the rest of my days balancing between providing for family by practicing law, and trying to live my life consisting with my convictions.  My church has a lay ministry, and I have served in a number of capacities, ranging from teaching Sunday School, to working with the youth, to leading the missionary efforts for a number of churches in the D.C. area, to administrative functions. Now, as I face a life-and-death struggle with cancer, I am drawing upon a lifetime of spiritual investments that are guiding and comforting me during this time of trial.

I am utterly comfortable with coexistence of the rational world of science and law, and the non-rational world of my religious beliefs.  God deals in absolute truths; mankind's truths are relative.  I try to be in the world while not of the world. This duality has infused all aspects of my life, and the friction between the things of Earth and the things of Heaven has helped smooth the rough stone that I am. 

I believe in God, and that He is the creator and father of my spirit, just as he is the father of all spirits.  Like Jeremiah, I believe that God knew me before I was born, and that I knew Him before this mortal life. I believe that I formed my personality in that pre-mortal life, that I understood that my Father had a plan for my life, and that I knew and embraced that plan.  Part of that plan, I believe, was that I would be sent to earth with a veil shrouding my memory of that pre-mortal life, so that I could learn to live by faith.  Faith is a belief or hope of things that are not seen, but are true. I believe in many things that I have not seen, but which I believe to be true.  I believe that I can communicate with God through prayer, and that He communicates with me through feelings, impressions, dreams, and the actions of others.  I have had many spiritual experiences that cannot be rationally explained.  Those experiences have created in me a deep and abiding knowledge that God is real, and that He loves and cares for us, his children. 



I believe that we are agents unto ourselves, to choose to do good or evil.  Through his or her choices, each person can bring light into the world, or darkness.  God permits his children to make those choices, even though it can cause great harm and suffering.  God can and does influence people, should they choose to listen, but does not grant all (or even very many) requests, because actions can and should have consequences.  I would like to think that God would hear my prayers, and the prayers of others, and heal me from this cancer, but I also believe that God gave us brains and skills that we might heal ourselves.  And if our knowledge of medicine is yet inadequate, then perhaps I will not recover.   

I do not rail against God for what I cannot control, but rather seek to accept that my mortal life is but a short moment to God.  I believe that, after my body dies, my spirit will continue to exist, possessing all of the knowledge and experience and tendencies that it now has. Like Job, I believe that, though my body will fail and be corrupted, yet in my resurrected flesh shall I know and behold God. 

I believe that my family relationships will continue after death.  When Jennifer and I were married, we were sealed to each other for time and all eternity, subject to our faithfulness.  In that period of time where I am dead and my family continues in mortality, I will be able to see them, even if they might not always be able to sense my presence.  I believe that I will see my children grow, see my grandchildren, and share in their joys and sorrows, even if I have no mortal body, because my spirit is eternal. 

I believe that God is merciful, and has given to all mankind a way to reconcile themselves to God.  I know that I am imperfect and that my sins a as scarlet, but that my soul can be made white as snow.  That reconciliation is made possible, I believe, through the atonement of our Savior, Jesus Christ. 

I am profoundly grateful that I can hold to the hope that these gospel teachings have given to me.  I am the fruit of seeds planted by the hope of my grandmother, by missionaries in the 1940's, and my own mother's faith.  I have spent nearly 50 years laying up sheaves for the harvest.  I do not know if I will be harvested soon, but I am deeply comforted by the sustaining faith that has been many years in the making.