I am now a cancer survivor.
Can I say that yet? Am I entitled? Is the battle ever completely won?
The malignancy has been removed from my body, and it's a new day and a new battle - with much improved odds for my success.
Throughout this ordeal I've struggled with sharing the journey. Our culture wallows in death worship; and cancer seems to cast someone as walking on the edge of otherworldly shadows. Cancer victims are the closest thing to a zombie anyone will ever meet. I wished to avoid that maudlin, too serious scene, and I preferred to present myself as a renewed and wiser man. I'm not a victim; I am a survivor.
Having done all the research and made all the treatment decisions, the waiting game began. I allowed myself time for a bit of distraction - and even some denial. I played on a Mexican beach, I went to concerts, I made passionate love. I ate,drank and made merry. I endured moods swings of irritability and depression and anger. The distant surgery date allowed me time to eventually settle into a fighting mode.
I kept the news of my condition to a minimum few, an inner circle on whom I could count for positive support. I wanted to tell others, but I found myself questioning my motives. Quite often I'd find myself in conversations about other people's medical issues (including cancer), and I'd want to scream "What about me?!" I recognized the underlying intent was selfish and insecure. That's when I knew my decision to keep quiet was a sound one.
During this time I did take advantage of opportunities to talk with some survivors of prostate cancer. The living example of their humor and perspective and patience meant the world to me. (Best advice: "No matter what you think the catheter is NOT coming out!")
I also talked with friends who had been hospitalized and asked for advice on what to bring to the hospital. (Best advice: Pillows!)
Of course, being a rocker, I had a soundtrack in my head during this waiting period.
A no brainer was Tom Petty & the Heartbreakers' "The Waiting" - it kept playing in my head. Whether waiting for a lover or surgery, the required patience is a challenge.
The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the
heart
The waiting is the hardest part
You take it on faith, you take it to the
heart
The waiting is the hardest part
https://www.youtube.com/watch?v=uMyCa35_mOg
Inexplicably, one tune that resonated over and over again
was Paul McCartney's "My Brave Face". The lyrics have
nothing to do with my life situation, but there was something
about the exhortation to keep up the "brave face" that I found
both encouraging and comforting.
Where I Can't Find My Brave Face,
Where I Can't Find My Brave Face,
My Brave, My Brave, My Brave Face.
My Brave Face.
https://www.youtube.com/watch?v=0Ty8NTNj6JI
Eventually a sense of resignation came over me, and Nick Lowe's "So it Goes"
came to mind. Again only the refrain made any sense to my circumstances.
And so it goes and so it goes
And so it goes and so it goes
But where it's goin' no one knows
https://www.youtube.com/watch?v=UCaf8woXAeM
Meanwhile the surgery date kept coming closer.
The week before surgery I turned over my job and packed for an extended stay in the hospital to be followed by recovery at my mom's house. Anna drove me to my mom's house in Houston. I brought my dog Clint too.
On a Monday, Anna and I met the hospital staff - including the surgeon. My surgeon is mild-mannered, bookish fellow. He carries his humility like an Amish farmer. He looks like he might get spooked by a loud noise, but I like his style and his intellect and his empathy. Anna was able to connect with his Christian sensibilities.
It it very important to always have someone by your side in medical encounters to ask questions, to take notes, to validate what was heard. (I can not sufficiently express my appreciation for Anna's support in this whole process. She has guided my attitude consistently in a positive direction, tolerated my mood swings, and presented a vision of a sexy & exciting future together. She deserves a blog post dedicated to the vital role of a loving partner.)
On Tuesday evening hours before surgery, we enjoyed a hearty pot roast dinner (which I almost missed due to an episode of acid reflux - that's next on the list of maladies to address). Afterward, we gathered around an altar my mom had built that had items representing my past, my present and my future. Everyone read a passage, reflected on it and said a prayer. I think the tangibles (such as finding the right doctor, hospital, recovery space) are important in the healing process, but I also have come to believe the intangibles (such as a caring support network, faith, love, etc) are just as vital.
Before going to bed, I had to inject a liquid antibiotic into my rectum. After trying a dozen different positions and squeezing all I could out of the bottle, I considered it done. (I only realized days later it was never supposed to an enema, only an injection.)
On Wednesday morning we awoke before dawn to arrive for my morning surgery. I donned my MD Anderson Cancer Center uniform (a black long sleeved T-shirt with the center's logo and a pair of black running shorts). We arrived on time, checked in, and found prime seats in the waiting area. Eventually a nurse arrived and told us to proceed to the pre-op staging areas -- along with my mom and Anna. There I changed into a gown and cap, and we took some funny pictures. Then a succession of nurses entered the room for different needs (taking vitals, inserting IVs, etc) . For the umpteenth time I was asked if I had fallen or been outside the country during the past two weeks. Finally Anna and my mom were asked to leave. I was given an anesthesia via my IV. I started counting silently to myself as a test.
I don't remember anything after the count of 20 while still being carted off down a hallway to the OR.
Here's one little known fact: Prostate surgery is performed with patient in an upside down position (known as steep Trendelenburg position) and the stomach is pumped up with CO2 gas. It looks something like this:
Of course I have no memory of the surgery. My next memory was in the recovery area as I was being lifted from the surgical table to the recovery table. Once I was conscious. I remained awake. I think I laid there for about three hours. I did not feel woozy or intoxicated. There was no pain; however there was a sense of intense pressure in my bladder. I compared it to being stuck in the backseat of a long road trip & needing to desperately pee - while no one is pulling over. The pressure was from the gas in my belly, and the urge to pee was likely from the newly installed catheter. My mom and Anna came in to see me; everyone was relieved to have the surgery behind us.
I only heard about this episode afterwards: When the surgery was completed, my surgeon visited my Mom, Anna, and family friends in the waiting area. Rather than the normally subdued man I'd come to know, they witnessed an exuberant and excited fellow; he exhibited a pride as if he'd just scored a game -winning touchdown! He shared how well the surgery had gone and his confidence in sparing nerve trucks. That's the kind of surgeon I wanted!
I stayed in the hospital for two nights. Intellectually one does not want to stay in a hospital too long, but I viscerally desired an exit. There is no rest. At least every hour and often more frequently a nurse demands your attention - mostly for taking vitals and administering drugs. I vomited once, I ran a fever the first night, and I had no appetite. Rather than tolerating the inane TV programming, I opted for a "relaxation" channel that played soft, relaxing music with landscape vistas during the day and a STAR TREK star field at night. Anna suffered by my side the whole time. Again her help and support were immeasurable - especially in keeping track of medications given and promises made.
Most of my discomfort centered on bladder spasms caused by the catheter. I was given drugs for this side effect; and eventually the spasms stopped.
A funny story: Everyone was very interested when my bowels would start working again. Opioid constipation is a big deal. So I'd sit on the commode for a long time with no activity. Finally as Anna was helping me sit down on the commode, a low and long fart escaped, we hooped and hollered and celebrated. Every fart thereafter was an occasion for a high five.
Being granted an exit from the hospital was a trying exercise in bureaucracy and patience. I was ready to go at 6am; we did not leave until 1pm. I used the time to get some walking exercise done. At the end of the hallway, every time I'd twirl Anna twice and give her a kiss.
I've been recuperating at my mom's place in Houston. I'm in better shape than anticipated, but like the disease itself the wounds that need to heal are mostly hidden. I'm taking pain medicine every 3 hours; it makes me a little light-headed. I gauge my progress and my activity level on pain and energy. My appetite has slowly returned. I'm pooping normally at least once a day. I've experienced scrotal swelling & tenderness - which basically means I only sit on the edge of padded chairs with my legs spread open.
Best advice while recuperating: wear lose fitting clothing such as running shorts or knit shorts with an elastic (not button) waist bands to accommodate the catheter and collection bag. There may be some urine leakage from your penis (especially whenever you laugh), so shorts with built-in underwear liners are helpful. Also, using a cane was very useful in the first week of walking around and getting in & out of bed.
My experience with the catheter has been mixed. I am not experiencing any pain, only a constant irritation at the end of my penis - like a slight pinch. My penis itself has gone into "turtle hiding" mode; it's not a happy camper. Carrying the collection bag around is a pain the ass; I have never become accustomed to it, and it acts like an anchor while sleeping - or while I'm attempting to sleep. I can say I have not gotten a single night of good sleep since this started. I blame the catheter collection bag more than any other factor. Another troublesome factor has been the "stat-lock," - a plastic clip which is glued to your inner thigh to hold the catheter. This glue wore off, and now I must tape the device to my inner thigh, and the tape must be removed and replaced daily. Pulling tape along with the hairs from my inner thighs has been the single most painful aspect of this entire ordeal.
On a side note; I think there an unintended lesson from the catheter and its bag: I now have an acute appreciation for the volume of urine I produce and the frequency required to urinate. I think this insight will be useful after the catheter is removed and I must consciously control my urine flow.
The catheter will be removed 10 days after surgery. Then I will continue my recovery at home in Austin.
My work situation is unclear. My company seems paralyzed about what to do. I finally had a manager confess they had no policy for this situation. (This is in stark contrast to the latitude I had at IBM when I had a project member battling cancer.) I've been pushing them since January to create a transition plan. Finally a week before I left I was instructed to dump all of my transition files onto my lead developer. I may be forced to go on medical leave - which means I'll only receive half pay. (Luckily I have planned for this contingency.) I may be the only IT resource who has never been "on the bench". Needless to say, their confusion is causing me unnecessary anxiety.
I will have a medical check up in 6 weeks to check for any lingering signs of cancer via a PSA blood test. My next challenges are to battle incontinence and impotence. Once the catheter is out, I can resume my Kegel exercises and start experimenting with incontinence underwear. Regarding impotence, patience will be required - and maybe a few sex toys.
I've been reading a lot about illness and cancer. I've especially enjoyed INTOXICATED BY MY ILLNESS (AND OTHER WRITINGS ON LIFE AND DEATH) by Anatole Broyrard, a flamboyant writer who succumbed to prostate cancer. While addressing prostate cancer and sexuality he wrote:
My libido is lodged not only in my prostate, but in my imagination, my memory, my conception of myself, my appreciation of women and of life itself. It belongs as much to my identity and my aesthetics as it does to physiology. When the cancer threatened my sexuality, my mind became immediately erect."With regards to the bigger picture, I kept reminding myself that I had committed myself to "living large": committing to love, selling my home, leaving my project - AND battling cancer - these were my burdens to bear in order to build a new future.
I am a planner by nature. I make daily lists - even on vacation. I've had strategic goals and tactical steps planned far in advance. I've ended up a very comfortable and very predicable place in my life. For the first time I can remember, I have no definite plans in the months ahead.I certainly have ideas and intentions, but I find myself operating with a new found optimism and faith that the right solutions will appear. I'm not sure where I'll be living, what I'll be doing for work, whether I'll be pissing on myself or not, etc. I'm pretty sure I'll be happy. I have finally achieved a state of 'experimental living" .
I'm the happy warrior with the brave face.
