Chemo Day 57 - low counts

This morning my doctor called me to say that she got the results of yesterday's lab work.  She didn't have the results when we met yesterday, since the lab was backed up.  She said that my platelet counts were still very low (under 40K), and my red blood cell counts likewise were low.  She commented that I must have been feeling extra tired in the past few weeks.  Uh, yes.  She advised that I not take the baby aspirin while my platelet counts were low - probably for the duration of the chemo.  She added that the chemo was a far more powerful anti-cancer weapon anyway, but that after that was done, the aspirin was a good idea.  She added that taking an extra week off was a good idea both for vacation purposes, and to give my body more time to recover.  Fine with me; I like not having chemo. 

Chemo Day 56 - I've got to believe it's getting better

Although Sir Paul and John never had chemo they expressed how I feel on this latest climb out of the third round ("I've got to admit it's getting better, a little better all the time.")  I'm feeling better each day as I put more distance between me and Round 3.  I'm looking forward to two weeks off until Round 4.  That, plus combined with the promise of a vacation next week, makes me feel as giddy as Red when he said, "I find I'm so excited, I can barely sit still or hold a thought in my head. I think it's the excitement only a free man can feel, a free man at the start of a long journey whose conclusion is uncertain. I hope I can make it across the border. I hope to see my friend and shake his hand. I hope the Pacific is as blue as it has been in my dreams. I hope."

Ok, quoting the Beatles and the Shawshank Redemption in one paragraph is a bit over the top.  But I'm just happy to be feeling better.  The past two weeks were not that easy from a mental and emotional standpoint.  

Today I did lab work and met with Dr. A-C.  She probed my abdomen to determine the source of a recurring pain that I've had since mid-January, soon after the second TURBT, and before I started chemo.  It ebbs and throbs on my left side.  I may go for days and not notice it, then I might wake up in the middle of the night with a throbbing pain, which slowly will dissipate over several days before popping up again.  The pain has nothing to do with my bowels and no correlation with my chemo schedule.  It feels like a pulled muscle, although I've been diligent in avoiding anything that could reasonably be called exercise.  She guessed that it likely is either an issue with an abdominal muscle, or perhaps a nerve, that might have been triggered by the second TURBT.  She suggested that I take an Aleve twice a day for a few days, and pay close attention to whether that does anything to diminish the pain.  I also have resolved to be even more inert, if that is possible.  Perhaps more Thin Mints would help. 

We also spoke about the recent studies in the Lancet suggesting that a daily dose of baby aspirin could reduce the risk of the spread of cancer by up to 55%.  She had read the studies and said that they confirmed earlier, smaller studies that had suggested at such an association.  She noted that there were risks to such a therapy, but said that, in my case, it made sense to start taking aspirin, although she would keep a close eye on my platelet count, since aspirin inhibited platelet creation.  She also noted that I would have to stop while I had my surgery, and I should not restart until approved by those doctors.  

Chelsea was impressed that my doctor was so quick to adopt the latest studies.  Her exposure to doctors is that too many are slow to adapt to the latest developments, instead sticking to established patters, even though developments suggest a different treatment.  

Upcoming BCAN Walk and Fundraiser

The Bladder Cancer Advocacy Network (BCAN) is an organization devoted to raising awareness of the fifth most common type of cancer in the U.S., as well as helping to channel resources and research.  The people at BCAN have been a valuable resource to me as I've navigated my way through this new disease.  Last night I spoke with BCAN's chairman, David Pulver, for more than an hour, as he told me of his experiences with his bladder cancer and neobladder, as well as the larger purpose of BCAN.  it is a wonderful organization that has developed tremendous reach within the medical community, and one that I intend to be associated with for a long time. 

On May 5, BCAN is having its annual Walk and Fundraiser for Bladder Cancer research.  There will be walks all over the country; we'll be at the walk on the National Mall in D.C.  I invite all readers of this blog to click on the this BCAN link (if the link does not work, copy this: http://www.stayclassy.org/fundraise?fcid=193020) to go to an invitation and fundraising page that Jennifer and I have set up.  Please consider joining us (free t-shirts to all!), or making a donation (credit cards accepted; donations can be made anonymously if you prefer), or hopefully both walking and donating.  Chelsea will be bringing a bunch of her med student colleagues, Spencer will be drawing upon his friends in the AA community, Kirsten and Garrett will be inviting their friends, and Jennifer and I will be reaching out to our friends and colleagues.  The walk will not be arduous -- more like an amble around the reflecting pool -- but it will be a time to gather together, celebrate friendships, and rally around a good cause.

More than anything else, events like this can build hope, and to quote from Andy's letter to Red, "hope is a good thing, maybe the best of things, and no good thing ever dies."

Chemo Day 52 - climbing out of the hole

I've slowly been crawling out of the chemo hole.  This third round has been the toughest yet, as far as overall weariness.  I have felt a greater mental and emotional toll than in prior rounds.  The newness of the adventure worn off, and now it's just a slog.  But I feel my body slowly coming back as the toxins leach from my system.  Yesterday I felt that familiar pain in my bones as my bone marrow responded to the Neulasta shot and struggled to pump out more white blood cells. Today that bone pain slowly is receding to a dull ache, and I know that over the next few days I'll be feeling better.  I'm looking forward to two weeks off.

Yesterday the press reported on a recent series of studies published in the Lancet, suggesting that taking a baby aspirin once a day can significantly reduce both the risks of cancer, and the risk of spreading.  Click here for a summary.  Here's what the Lancet says: 

Aspirin to prevent and treat cancer

A collection of three papers by Rothwell and colleagues add to the growing evidence base suggesting that daily aspirin can be used to help prevent and possibly treat cancer. In the first Article the authors studied individual patient data from 51 randomised trials of daily aspirin versus no aspirin to prevent vascular events such as heart attacks. A second Article reports the effect of aspirin on cancer metastasis. Finally, the third Article, published in The Lancet Oncology, also looked at aspirin’s effect on metastases, this time using a systematic review of observational versus randomised trials. The three papers are discussed further in a Comment.

I'll be asking my doctor whether I should start taking an aspirin a day, since one of the studies suggests that people who take low doses of aspirin regularly and who already have cancer reduce the risk of metastasis—that is, the spread of that cancer to other body parts—by 55 percent.

Peter M. Rothwell, et al. “Effect of daily aspirin on risk of cancer metastasis: a study of incident cancers during randomised controlled trials.” The Lancet, doi:10.1016/S0140-6736(12)60209-8.

Day 49 - Another round, another day

This past week has been tough.  I felt worn down by the accumulated toxins in my body, and had less physical energy, mental drive, emotional depth, or spiritual faith than I would like to have had.  Yesterday I went home early from church, since I had no energy and was feeling weak.  Much as I would like to fill the spiritual tank, it's hard to do when you just want to lean back and close your eyes. 

This morning I went back to the cancer center for another round of Gemzar (a "short" round), and was told that my white blood cell counts were very low - about 20% of normal.  After some consulting with my doctor, they decided to proceed with the chemo, since I'm getting a Neulasta booster shot tomorrow.  But I was cautioned to stay away from sick people, since my immune system is compromised. Maybe I'll put a "quarantine" note on my office door. 

I can look forward to a one-week longer break from chemo - round 4 won't start until April 9, since we hope to take the kids to visit the grandparents and family in Florida over their school's spring break during the week of April 2.  I hope I'm going to be able to go - I feel like I need the break.  Yet I already am dreading that next course.  I am weary of chemo, weary of weakness, weary of the side effects.  If this is a marathon, I feel like I'm at mile 20 and hitting the wall.  And part of me knows that the race won't end at mile 26.2.  Instead, I'm running a race and I don't know where the finish line is. 

My new motto:  When the going gets tough, take a nap. 

Chemo Day 44 - bleah

Almost immediately after the Monday's chemo, I felt beaten down, more tired that I had after any of my previous rounds.  The warnings that I would be feeling a cumulative effect has relentlessly hammered home.  I spent most of Tuesday dragging around, trying to get work done from home, but feeling like I was spinning my wheels.  I ran out of gas at about 9 pm and went to bed.  At 3 am I was wide awake riding a wave of nausea - fortunately it all stayed below the surface - but for two hours I tossed and turned.  I actually responded to a series of emails from a client at 3:30 am, and only late realized that probably was not a good precedent.  I'm slowly feeling better, but it's a long slog. 

Chemo Day 42 - third round of carpet bombing

Today was another long chemo day at the GW Cancer Clinic.  My platelets and white blood cell counts bounced back nicely from last week, and physiologically my body is ready for another round of poisoning.  Mentally, I'm tired of chemo and all of its side effects.  I'm halfway done, and just need to suck it up and get through it. 

I had a long conversation with my oncologist, Dr. Aragon-Ching, before the chemo started.  She explained that, after the last infusion on April 16, and the last Neulasta shot on April 17, I would wait for 3 or 4 weeks for all of the drugs to be completely out of my body before they do the next round of scans.  She said that the chemo drugs, as well as the Nulasta, can alter the bone marrow and other cellular readings and give inaccurate results.  So sometime in mid-May, I'll have a full-body PET scan, and an abdominal CT scan.  The radiologists at WRA, GW, and Hopkins all will read the scans and give me their interpretations.  (A thousand years ago they would have thrown chicken bones on the floor and given me their interpretations.)  She said that the scans are done at a 5mm level, so any distant metasteses that are smaller than that and not in the cros-section will be missed.  Apparently the scans are not all that useful -- to be picked up, a distant cancer has to have a bright flashing billboard saying "here I am!"  As a result, she expects the scans to be negative. 

Assuming the scans find no billboards, I'll have the radical cystoprostectomy (RC) and neobladder procedure scheduled, probably for early June.  I'm still leaning towards having Dr. Schoenberg at Hopkins doing it, but I intend to follow his suggestion to check on other doctors for second opinions.  This past weekend, I read a number of medical journal articles and abstracts about the Studer neobladder.  (For a detailed description and drawings of what this involves, see this PDF).  Most interesting to me was the reports in the articles that 20-30% of the patients who had surgery died within 5 years from the spreading of bladder cancer.  I am still sifting through the articles to parse out the details -- some patients had T1, others T2 (like me), or T3 or T4.  Some had neoadjuvant chemotherapy (like me), others did not.  Of those that had neoadjvant chemo, some had MVAC, others had GemCis (like me).  Also, there was wide variation in the ages of the patients -- older patients or those with co-morbidities were at greater risk of recurrence. 

I spoke with Dr. Aragon-Ching about these data.  She acknowledged that I was reading the reports correctly, and that, taken as a whole, up to one third of bladder cancer patents who have the diseased organs removed nonetheless have the cancer spread to other organs.  That spreading (obviously) occurs before the bladder and prostate are removed, but are not caught on any scans.  She added that, when the bladder cancer spreads to other organs, it is inevitabaly fatal.  Bladder cancer loves to spread to the liver and the lungs.  Additional chemo and radiation and maybe surgery can slow the progression, but all the doctors can do is play cancer whack-a-mole (my conclusion, not her words).  It's clear that, once that stuff is loose in the body, it's just a question of time. 

She also said that there is very little the doctors can do to predict whether I'll be one of those 1/3.  She said that more recent data suggests that younger patients (below age 60) with T2, GemCis neoadjuvant chemo, and RC, have the odds of distant metasteses drop to between 20-25%.  She said that the type of urine diversion makes zero difference to long-term prognosis (which makes sense, because the point of RC is removing the diseased bladder and the probably cancerous prostate; what you do thereafter had more to do with quality of life than cancer). 

She said that, one of the better predictors was that, after the bladder and prostate is removed, Hopkins will do a very careful and detailed pathological examination of the organs and lymph nodes to determine just how laced with cancer the bladder tissue is, whether the prostate is cancerous, and if so, how much, and the same questions for the lymph nodes.  She said that the more cancer found in that tissue, the higher the likelihood that the cancer has already spread, and vice-versa.  In answer to my question regarding long-term planning, she said I should continue to take a wait-and-see approach. 

I found this exchange to be helpful, if not a bit frustrating.  We expect doctors to give clear answers and firm predictions, but with this disease, there is so little that we can tell in advance.  I appreciated how she candidly admitted there was much that we didn't know, and that oncologists like her treat bladder cancer as a systemic disease that can't be detected.  To use a crude analogy, my chemotherapy is like carpet bombing the mountains of Afghanistan hoping to kill some terrorists, but mostly it is just bouncing mud. 

Chemo Day 38 - dealing with it

I find myself slowly climbing out of the chemo-induced side effects:  the sores in my mouth are slowly healing; the rate of hair loss is slowing; the amount of energy I have at the cellular level is slowly increasing.  But my awareness of these improvements is tempered with the knowledge that, next Monday, I start my third cycle and plunge back into the pit again.  That knowledge wears on me, and diminishes the satisfaction that my temporary improvement might otherwise bring. 

I am now beginning to better appreciate how chemotherapy can create a persistent mental or emotional drain.  I generally think of myself as a realist with a strong core and a resilient sense of optimism.  I find that the knowledge that I'm going to go through the same thing two more times, and I'm probably going to have accumulated even more side effects, can be draining on my sense of optimism.  But the realist side of me says, "it is what it is, deal with it."  So I do.

I find that ways to deal with it mostly involve getting outside of myself and spending time with others.  Last night I helped my son-in-law install a new light fixture, which involved some diagnostic guesswork and rewiring the 50 year old circuits.  I didn't think about my cancer once.  When I've taken my daughter out on her new (to her) motorcycle and watched her practice in a large parking lot, I didn't think about my cancer.  When I prepare for and teach my law school class, or Sunday School class, I don't think about my cancer.  When I am engaged at work, I don't think about my cancer.  When I am soaking with my wife in the hot tub and talking  about the day, I don't think about my cancer. 

For me, the best way to displace my problems and worries is to spend time with and serve others. 

Chemo Day 36 - ongoing side effects

Even though I don't have chemo this week, my body continues to reflect the effects of repeated rounds of poisoning.  The inside of my mouth feels like it has blisters, as if I had been drinking something too hot.  I had read that mouth sores was a common side effect, and my doctor had told me to get Biotene oral rinse and use it frequently to reduce the chance of infection.  Fortunately, the sores do not have a sensitivity (yet), so my diet is still largely unaffected.  Likewise, there has been no nausea or other GI problems during the weeks that I do not have Cisplatin, and it is a wonderful thing to enjoy regularity. 

I also continue to have reduced stamina and energy, even during non-chemo weeks.  It takes 3-4 weeks for the body to substantially overcome the after-effects of the drugs, so feeling the tiredness at the cellular level is to be expected.  Yesterday afternoon I laid down on the couch in my office and rested - when I opened my eyes, an hour and a half had passed!  That was unusual for me, especially since I had slept well for the past few nights.  It's all about learning to listen to my body, and not fight it. Cancer teaches patience with a brutal whip. 

Chemo Day 34 - Gratitude

At my church's general congregation meeting on the first Sunday of each month, there is no previously arrange list of speakers.  Instead, it is an open mike meeting, where any member of the congregation may come forward and share whatever spiritual thoughts may be on his or her mind.  The meeting is preceded by a fast of at least two meals, and church members are encouraged to donate at least the cost of those meals to assist others in need. 

This "fast and testimony" meeting is one of my favorite meetings of the month.  I enjoy the unscripted heartfelt expressions of my fellow congregants, who are moved upon to speak of recent experiences that have strengthened their faith.  I typically do not participate as a speaker, as I am teach the adult Sunday School class following the general meeting, and am able to share during that class whatever might be on my mind. 

During the testimony portion of the meeting, another church member spoke movingly about his recent health battles, and of his wife's experience of stroke-like symptoms a few days earlier.  My heart was moved to hear him express his gratitude, and I felt prompted to speak.  I ignored the feeling.  A minute or so later, I felt a stronger prompting that I should stand up and share my feelings.  I once again ignored it.  I was on the inside of a row, I rationalized, and I'd have to squeeze my way past my family.  Plus, anyone who wanted to know how I was doing could read this blog.  I stayed put.  A third time, I felt a very specific prompting to share my testimony.  It was a specific feeling, almost a command, to get off my butt and speak.

I don't claim to be a spiritual giant.  I too often rely upon my own intellect instead of being attuned to the promptings of the spirit.  I often rationalize that I don't need to constantly seek out the mind of the Lord, because he's got better things to do, and I manage to stumble along just fine on my own.  Plus, sometimes it's hard for me to distinguish between true spiritual promptings, and something I might be desiring, but not sourced in the divine.  Too often, I feel akin to Elijah, who was looking for the Lord in the strong wind, or earthquake, or fire, but the Lord was not in the wind, or the fire, or the earthquake, but "a still small voice."

I finally listened to that still small voice, and stood up, worked my way past my family, and walked to the pulpit at the front of the congregation, intending to express how I had been stripped of pride by this cancer, and how I was taking one day at a time.  But I did not say that.  When I arrived at the podium, I started to speak without first composing the words in my mind.  Words poured forth without conscious thought.  On one level, I was aware of what was happening, and I was curious to hear what I would say next.  On another level, I felt closer to God than I had in some time. 

I expressed gratitude for the loving support of my family, friends, and colleagues.  I spoke of how my family had grown closer together and rallied as a result of this disease.  I gave thanks of how my consciousness had been raised, and how I had better learned to rely on the Lord, and not my own understanding.  I gave thanks for each day that my life was prolonged, living each day as if might be my last, but celebrating the gift of life each morning and evening.  I said how I was greatly comforted by the promise expressed by Job, that I knew, as did he, that my Redeemer lives, and that after my skin worms (or cancer) destroys my body, yet in my flesh shall I see God. 

My emotions were very close to the surface as I spoke.  My voice broke repeatedly, as the import of those unplanned words rolled forth.  I felt in tune with the mind of the Lord, and felt that burning within my heart, confirming the truths of which I spoke. I was not conscious of the effect my word had on others until I returned to my seat an noticed a surprisingly large number of people with tears on their faces.  After the meeting, many people came up to me and expressed quiet gratitude for my words, telling me that their souls were nourished by my expressions of faith. 

We all are sheep, and we all are shepherds. 

Chemo Day 32 - a good week

This morning I woke up at about 5:30 am, and after emerging from that in-between stage, decided to update my blog.  I typed a couple of deeply profound and moving paragraphs using the iPad, then before posting navigated away to look at the news stories.  When I came back, all of those profound thoughts were gone, and try as I might, I can't reclaim them.  Maybe I was still dreaming after all. 

In any event, this past week had been a good week.  I have tolerated the Gemzar round of chemo with little side effects.  The most noticeable thing is that the roots of my teeth ache.  Not in the I've got a cavity, sensitive to cold or heat ache, but the core of my roots ache.  I'd read that chemo can cause or exacerbate dental pain, but I had felt nothing like that until now.  It's weird how I'm feeling different side effects for each regimen.  But in the big picture, the fact that this is the most prominent side effect means that things have been going relatively well.  Next week is a chemo-free week, so hopefully normalcy will prevail.

Last night I attended my son's one-year sobriety ceremony at an AA meeting. It was moving to hear him speak of his challenges and decision to confront his addiction.  While listening to his sponsor and others speak of the fear that motivated them to use, then finding the courage to challenge their addiction (usually after hitting bottom) and finding the joy in their sobriety, I contemplated the sources of happiness.  I believe that happiness comes from wanting what you've got, not getting what you want.  True joy comes from selfless service to others, not self-gratification.  I thought of Bob Cratchit's declaration, despite the death of his son, of, "I am a happy man. I am a truly happy man." He could not control the events that affected his family's health, but despite them, or perhaps because of them, he was happy with what (and who) he had.

While listening to the speakers last night describe how they were desperately unhappy and using alcohol or drugs to mask their pain, I thought of Jean-Paul Sartre declaration that "hell is other people." For the self-absorbed or those lacking a desire to serve others, I imagine there is truth to that existentialist capitulation.  But I believe that, to those who can reach outside of themselves, and take the time and energy to strengthen and uplift others, that heaven is other people.  I was struck by the fact that a room might contain people who are in either their self-created hell or heaven, depending upon their state of mind and willingness to serve others. 

After the meeting, I told my son's sponsor how my son had asked me (before he committed to sobriety) what gave me happiness, and I told him that I found deep satisfaction in serving others, including my family.  I viewed my work as a form of service to my family, providing for and serving them.  I remember my son looking at me like I had two heads.  That was then.  Now, he gets it.  He seeks out opportunities to help others in the AA community.  He is willing to drive great distances to assist those in need.  He is willing to counsel, support, and encourage others.  In so doing, he is feeding his own soul.  He has found the truth that such acts bless him that gives and him that takes, as Portia spoke:

The quality of mercy is not strain’d, 
It droppeth as the gentle rain from heaven 
Upon the place beneath: it is twice bless’d; 
It blesseth him that gives and him that takes: 
’Tis mightiest in the mightiest; it becomes
The throned monarch better than his crown; 
His sceptre shows the force of temporal power, 
The attribute to awe and majesty, 
Wherein doth sit the dread and fear of kings;
But mercy is above this sceptred sway, 
It is enthroned in the hearts of kings, 
It is an attribute to God himself, 
And earthly power doth then show likest God’s 
When mercy seasons justice.

I do not know where this path I walk will take me.  But I am grateful for the insights that I am gaining along the way.  While my cancer may leave me a weaker man, I am hopeful it will also leave me a better man.