We returned to the US from Thailand in March. In April, we moved to an apartment in downtown Des Moines and I started covering the Democratic candidates for President. We enjoyed living in Des Moines and I was busier than I had been in years. Life was good.
In May, I had some pain and stiffness in my legs that I dismissed as age and basically ignored it. I’ve always been healthy. I haven’t spent significant in time in a hospital since I was 4 or 5. Never had surgery or a broken bone. Traveling and eating pretty much like a local in Thailand, Mexico, Burma, Cambodia and more, I never had a problem. Healthwise, I’ve led a practically charmed life doing stupid things and never experiencing any consequences for those stupid things.
More after the jump...
In southern Mexico, in 2004, I was working on a story about immigration and got hit by a taxi while I was walking through a market. I picked myself, brushed myself off, and kept going.
In Thailand, during street protests in 2014, I was shot in the back by I what I think was a rubber bullet. It knocked me to the ground, I crawled into the school I was headed to, checked myself out. There were no open wounds or blood, I hunkered down for a couple of minutes to catch my breath and consider my plans. Then I went back to work photographing protesters.
In rural Laos, in 2016, I crashed a motorcycle three times (in one day) while I was working on a story about fishermen on the Mekong River. Each time, I brushed myself off, got back on the bike and puttered on down the road. By the end of the day, I decided I wasn’t meant to drive motorcycles.
In Nepal, in 2015, I was working on a story about the earthquake. I fell through the roof of a collapsed home and cut my leg open on a nail. I wrapped it and kept going. Never suffered any ill effects from anything.
Like I said, a lifetime of doing unhealthy stupid things and never experiencing any consequences. I knew I wasn’t bulletproof but sometimes I felt like I was.
In June, the leg pain worsened. I started popping Ibuprofen like they were M&Ms. I thought that it was because I had recently switched wallets from a superthin wallet I’ve used for years to a very thick, but very nice, leather wallet I had gotten as a gift (seriously). I thought maybe the thick wallet had somehow bruised my hip (it’s a thing, I looked it up on the internet). I didn’t know what was going on and I was grasping at straws.
In July, the pain was so bad and paralyzing, that I ended up in a local emergency room. Going to the ER was a compromise. I wanted to stay home and tough it out. Cathy wanted to call 911. I wasn’t about to be wheeled out of our apartment on a stretcher so I hobbled out to the car and Cathy drove me to a nearby ER. At this point, I could hardly walk. I couldn’t handle stairs. If I was trying to cross a street, I had to cross at handicapped curb cuts because I couldn’t step from street level up to the sidewalk.
The ER doctor ordered X-rays, couldn’t find anything wrong, prescribed extra strength Ibuprofen and a series of exercises and sent me home.
The exercises and Ibuprofen didn’t help.
I went to my family doctor who didn’t see anything wrong in my legs, but did a blood draw, suggested I stay with the Ibuprofen and prescribed physical therapy.
I was in physical therapy twice a week for about a month. Sometimes I thought things were getting better. Sometimes I thought it was hopeless. The whole time the pain persisted.
About a week after the blood draw, my family doctor called and said my PSA score was somewhat elevated. (Her actual words were “I’ve never seen one this high.”) I was sent to a urologist in the Des Moines suburbs who did a biopsy. Then I went home and waited for results. And the pain persisted.
While I was waiting for the biopsy results the pain flared and I ended up back in the ER. This time it was so bad that when I got out of the car, at the hospital, I was using a walker and practically crawling. The security guard came running out with a wheelchair and wheeled me into the triage area. After a very brief triage, I was wheeled back to the exam bays.
The Physician’s Assistant in the ER started an IV (blessed mother morphine I think) and the pain receded. She ordered a CT scan. When the results came in, she came back to the exam bay and told me that whatever I thought the problem, it was “significantly more complicated” than I thought. She said the CT scan showed spots on my pelvis. I think the words hit Cathy harder than they hit me because I was blissed out on whatever pain killer was flowing through the IV. The PA told me to see the urologist on Monday (this was on a Saturday), gave me a prescription for a couple of days worth Oxycodone, and sent me home.
Monday, I saw the urologist’s Nurse Practitioner. The results from the biopsy hadn’t come in yet, but based on the ER’s CT scan and my PSA score, she said I had prostate cancer. She gave me another prescription, for Oxycontin this time. She scheduled me for another appointment with the urologist later in the week to get the results of the biopsy and sent me home.
The Oxy took care of the pain, but I was still physically unable to walk or work (because being a photojournalist means spending a lot of time on your feet and walking). When I saw the urologist later in the week, he confirmed the cancer diagnosis, ordered a bone scan, and set me up with an oncologist in downtown Des Moines. He gave me a shot that he said would restore some my mobility and reduce the pain. And he gave me a refill of the Oxy.
That shot was nothing short of miraculous. In a matter of days, the my mobility was returning and I was starting to walk again. I’m not sure if the pain was reduced by the shot or the Oxy I was taking, but the pain was also going away.
Although I was taking lots of Oxy, this is not an addiction story. That part ended well.
I met with my oncologist about a week later and he confirmed what others had hinted at.
I have stage IV prostate cancer. The bone scan showed that it has metastasized and spread to my bones. He said that it had spread so much that it was inoperable, that chemotherapy would not be effective, and there was too much cancer to treat effectively with radiation (although some individual tumors might be treatable with radiation).
He said my cancer is terminal.
He said that despite grim nature of the prognosis, my cancer is treatable but not curable. That with a drug cocktail it would be possible to shrink the tumors and ease the pain. He said he has some patients who have lived for years with my cancer on this treatment plan. And he prescribed more Oxy. He told me to consider the cancer a chronic disease, like diabetes, that would be with me until I died.
And let me repeat, although I was taking lots of Oxy, this is not an addiction story. That part ended well.
I started the drug cocktail in October. I was warned that it has some nasty side effects, but going back to my charmed life healthwise, I haven’t suffered any of those side effects. Within days of starting the cocktail, the improvement, which started with the shot from the urologist, accelerated and I was back to walking and working pain free. I started cutting back on the Oxy, from 4 or 5 per day to one per day. Then I just stopped taking it. I never felt like I was addicted and I didn’t have any withdrawal pains (I told you the Oxy part ended well).
I started the treatment plan not really knowing how widespread the cancer is, just that it is widespread. I asked my oncolologist’s NP how many tumors I had, if it is “more than two but less than five.” She said it was much more than five but wasn’t specific. Just that there were tumors in my legs, hips and pelvis, spine and sternum, arms, and finally, my skull.
The next week, my family doctor took a look at my bone scan and told me there were somewhere between 70 and 80 tumors in my bones. Which feels like a lot.
Despite all of that, thanks to the wonders of chemistry and drugs, I am back at work and have been busier since late October through this month than I was through the late summer and fall. I honestly feel better than I have in many, many months and I am pretty much back to being a sarcastic pain in the ass.
I don’t know what is going to happen going forward. I am supposed to stay on the drug cocktail forever. The doc said it usually works for about 5 years and then I start a different treatment plan. I take a fistful of drugs four times a day, every day of the week. Both my oncologist and family doctor have been pleased with my progress so far. My PSA score dropped by half the first month I was on the cocktail, and then dropped by half again the second month, which is a good thing. It’s still very high however. The cancer is not in remission, it’s just laying low.
My stamina isn’t what it used to be. I am back to walking for exercise and I feel like my stamina is improving. I start most days listening to Iowa Public Radio while I go on a 3.5 to 5 mile walk through the Des Moines Skywalk, I’m looking forward to walking outside when it warms up (in Phoenix I walked 9-12 miles per day). I have enough stamina to chase candidates through the frozen corn fields of Iowa.
Through this all Cathy has been a rock. She keeps me on schedule with doctors’ appointments, keeps track of which drugs I need to take and when I need to take them. The thing I most regret is that this has made her life in our supposed semi-retirement a lot more worrying than it should be.
I don’t think this is where the story ends, but what follows hasn’t been written yet.