A note to those expecting this to be about some off-beat character I met in a coffee shop, or some fascinating place that only I and thousands of other travel writers had discovered, or some other road trip insights that you already knew but somehow are willing to give me credit for observing: this is not about that. BUT, there is hope! Stay tuned.
It seems I had been living in denial that I had (or had had) cancer. The diagnosis came so suddenly, the surgery so quickly, and the results showing everything was clear so promptly, it did not feel like I had cancer. No oncologist was involved, no follow-on radiation, chemo, or other treatment was even discussed. Just come back every 2 or 3 months for monitoring, they said. It felt more like they had removed a wart or a mole or something, got it out, and that was that. Isn’t cancer supposed to be a big deal? The surgery was nasty but it just didn’t seem real to me that it was cancer.
Nevertheless, my cousin Herb and long-time friend Bob had a clearer understanding than I and encouraged (that’s the polite word, it was actually more like demanded!) that I go to Houston for a second opinion on further treatment from MD Anderson Cancer Clinic, the best cancer clinic in the world. (OK, let’s just say one of the top two to avoid argument.)
We decided to make an RV road trip out of it. The trip was long, but with one exception, uneventful. My navigator’s power seat failed, leaving her with her feet dangling over the entry stairs for a day and a half until she got on her hands and knees, looked under the chair, and found that a cable connection had come undone. I put tab A back into slot B, and she got her footrest back.
Stress levels sky-rocketed as we entered Texas, not so much due to the pending medical appointments but because every single freaking city in Texas is undergoing dozens and dozens of miles of massive road construction resulting in excessively narrow temporary lanes that dipped and dived with lane markings that went everywhere, just like the nut cases that were flying around me as if I was a Honda Fit and could stop like a sports car rather than a 35 foot long, 32,000 pound motorhome.
I hadn’t worried too much about the weather, since this is not hurricane season nor is it the time of year for Houston’s famous heat and humidity. Clouds loomed as we entered Houston’s obligatory 30 mile road construction project, and we arrived at Lakeview RV Resort to balmy temperatures and a light drizzle. Before I had completed hooking up the motorhome, however, the wind came up, the rain came pouring down, and the temperature dropped 20 degrees and was getting colder. It turned out that a massive cold front had come straight down from Canada (thanks cousin Ted), with sleet and freezing temperatures in the forecast. We had made it just in time.
I began to wonder what the MDA people were going to say. They are the world leaders in big C Cancer research and treatment. Would they say this is a big D Deal and advise radiation or re-excision (a euphemism for taking out another 10% of my tongue)? Those were the only options unless they agreed with my Oregon doctors to simply monitor the situation.
Tuesday morning the wind chill was below freezing as I walked into the enormous MD Anderson complex. All of a sudden the realization hit me: every single person in this building has cancer or is involved in treating it. No more denial. This is the big C, I am here because I had it, maybe still have it, and all options are on the table. This is real. With a big R.
The exam room was cold. I put on my Oregon Ducks sweater. When the PA came in he smiled and said “that sweater will not necessarily get you better treatment, but it won’t hurt.” My assigned doctor, Dr Gross, had trained and practiced in Portland before he moved to MDA. My choice of sweater was not a coincidence.
“When patients come to us for a second opinion after having already had their cancer surgery,” the PA continued, “we don’t always get complete records or cooperation from their treating surgeons. In this case I want to compliment your OHSU doctors – they gave us complete records and a full report.” Apparently, everything I told him matched what they had written. The MDA team felt comfortable they had the full story.
Dr Gross came in. My first reaction was that he was so young! As we talked, my perception of him changed. He exuded competence and had a great bedside manner. He examined my tongue and mouth. He said everything looks good, the problems I’ve been experiencing are normal for the healing process.
We reviewed the options. The tension built. It was time for him to give me his recommendation. The envelope please…and the winner is…
“There is no right or wrong answer for what we do now. There is some debate about it. Everything looks good now, it’s hard to argue for more treatment. At this point I would be inclined to sit tight.”
The magic word! Every 2 or 3 months. Forever. It seems that inflammation from my big RA arthritis had set the table at which the stupid cancer came in to feast. That uninvited guest is gone. Another may come. But all the same, no radiation and no re-excision at this point.
I asked what are the chances of me getting another stupid cancer, I’d heard 12 to 20%. He thought and gave me an answer based on my situation not the averages: “I’d say a little under 10%.” I’ll take those odds!
BUT, all of this was subject to the results of a new CT Scan he ordered. If it came back positive, all bets were off. After an already long day, I headed to Diagnostic Imaging and had the scan. It was late at night when I drove back to the RV, physically, mentally, and emotionally exhausted.
Wednesday it felt good to just veg out and try not to think about it. What will be will be. Que Sera Sera.
Thursday I was confident I would hear from him. I did not. Anxiety began to build.
Friday, I called to follow up. The assistant checked my records, and then hesitated. I would need to talk with the doctor. (Not good.) She said she would send him a message. I had to do something to take my mind off of what was taking so long, and we decided to head to Space Center Houston. Late in the afternoon the call came while I was in the bowels of the Space Shuttle and was outside of cell coverage. I checked my voicemail when I came out. The results of the CT Scan were in:
All negative. No cancer.
That evening, we celebrated the results, knowing that many are not so lucky, but appreciating that, for now, we are in the clear. We have been in limbo for months, not knowing whether to plan the next trips or sell the motorhome. Now, it’s time to break out the maps and tour books.
This is the LAST of my cancer posts. This blog will now return to its roots: writing about some off-beat character I met in a coffee shop, or some fascinating place that only I and thousands of other travel writers had discovered, or some other road trip insights that you already knew but somehow are willing to give me credit for observing.
A special note of thanks to all who have traveled this cancer journey with me. Many thanks to lawyer buddy Bob who greased the skids and got me into MDA and made me go. Thanks to cousin Herb for his continuing coaching and assistance in figuring out what is happening and what I should do. Thanks to Cancer Buddies Ted and Jerry who gave me their support and shared their experiences, as they continue on their own (former) cancer journeys. Big time thanks to Dr Dellinger (who humored my complaints long enough to actually look at my tongue) and Dr Clayburgh (my cancer surgeon who jumped into action and saved my life). Big thanks also to all my family, each of whom has been supportive and loving, but most of all to my navigator, friend, companion, lover-doodle, encourager, tolerator, and wife, Carol. She keeps me grounded, is steady when I am ready to go off the deep end, and goes with the flow – even when the flow is like a class IV rapid. I love you babe.