Part 3: Finding Doctors, etc.

It’s Monday, September 28^th, day 9 of this fucked up journey.  The covid era is over for me, it’s the cancer era.  Covid is still there, and I will be incredibly careful, but I have cancer. That has and probably will continue to overwhelm each and every moment of my life.  I can’t seem to sleep at night – 6 hours at best.  I try to nap in the day, but no luck. 

One of the hard things for me is talking about it.  I usually cry when I talk openly of it.  I am sure this will lessen over time, and it already has a little.  I texted my golfing buddies, since I didn’t have the ability to talk to them yet.  I was able to talk with Lee, my son, on Saturday, playing Magic the Gathering over Zoom.  It was great to feel like I did before the cancer.

At this point, all I know is that have cancer. It’s hard to figure out how to find doctors and hospitals. It’s not like looking for restaurant reviews on Yelp or product reviews on Amazon. I realized I had to start asking around for help.

Dr. S and Dr. T are my family doctors and suggested I meet with an ENT. Each one suggested a different ENT, who are partners and doctors I’ve seen before for earaches and hearing issues. How are we supposed to know which one to pick?

My son’s in-laws have lived in Minneapolis for generations. On Saturday, I texted David and Diane asking if they knew anyone at Mayo that might help.  They did!  A friend of theirs, Michael, had this exact cancer, so they connected us.  For some reason, I also reached out to Alex, Eric’s old girlfriend from college.  We had seen her journey through breast cancer on Facebook, and she seemed very resilient.  We are going to speak today.  Amazingly enough, her dad had this exact same cancer, but I’m jumping ahead.  I have gone from never having heard of this cancer 6 days ago to having it and having contact with 2 other men who have had it.

Back to the conversation with Michael. Suzy and I spoke to him yesterday. He had this same cancer at the base of his tongue in 2007, had surgery, radiation, etc., and he lived to talk about it.  Maybe I will be as fortunate.  The main learning is that this is a tough surgery – he was on a fentanyl patch, took months to recover.  However, the good news is that he fully recovered, and it hasn’t impacted his speech, ability to eat, etc.  There is a scary side to this cancer that I don’t want to focus on until I get there.  I can’t say I feel ok about this, but I’m certainly less scared. 

Michael connected me with his doctor, Dr. F, from his surgery who is still at Mayo in Rochester, Minnesota. Dr. F reached out to me via email (while he was on vacation!) telling me who I could speak to in Rochester. After back and forth a few times, I was connected to Dr. P, a Radiation Oncologist at Mayo in Phoenix.  Eventually this led to appointments with a number of doctors at the Mayo Clinic here.

We have come up with a new acronym – GTC which stands for “given the circumstances.”  Even when things are as bad as they feel right now, GTC,  there can be positives.   This week has been amazing.  I have appointments in 10 days with two doctors from the world-class Mayo Clinic, found out how supportive my family and friends are, and realized that perhaps I can beat this.  I also realize the meaning of privilege.  I am so lucky to live in America where the best cancer doctors practice, to have great insurance, to have this kind of ”privilege”, and to live near one of the best hospitals in the world.

I had the most amazing experience today.  I called Alex, Eric’s old girlfriend from his SDSU days.  She had breast cancer, the very worst kind and has been through the wringer over the past 18 months.  We spoke for an hour and I learned so much from her:

• Go to a big, great, research hospital like Mayo.
• The Ring Theory: This a theory about how to protect people in crisis.  The person in crisis is at the center.  The next ring is those closest to you, in my case Suzy. The next closest ring is Eric, Irene, Lee, and Heidy. Then close friends and family, etc. as you go out farther. Another element of ring theory is the direction in which attitudes have an outlet.  Caring and support, without judgment or advice, should be directed inward.  If someone in an outer ring is interacting with someone close to the center, it should be all comfort and support.  Dumping and complaining should only be directed outwards.  The person who’s at the center can bitch to their heart’s content to anyone who’s prepared to listen. But if someone further from the center is complaining to someone closer to the center, that’s out of line.  The key message of ring theory: comfort in, dump out (Ring Theory explained – from psychology today).
• Her dad had the same cancer and she is going to connect us.
• Suzy needs to be the scribe, second set of ears, my protectorate.
• For now, I should just focus on the cancer and getting through it, everything else is secondary.
• Look for books that talk about my cancer as soon as I have definitive diagnosis.
• Ignore those people who don’t support, look for those that comfort.
• Don’t be afraid to be angry, or show it.  Tough to just keep it inside.
• Make the doctors explain stuff to a level that I understand.
• Look for the best doctors, not ones that you necessarily connect with.
• Suzy needs support too, but perhaps not from me as much as others.
• Keep and organize ALL documents.
• Don’t listen to to yoga and blueberry suggestions (some reason I say yogurt and blueberries, which is about as useful for curing cancer).
• Don’t feel the need to keep everyone up-to-date.

There are other nuggets that I can’t remember.  When Alex was dating Eric, she was so young.  When they broke up, I assumed I’d never see her again.  Now, Alex is mature beyond her years, thoughtful, and comforting.  I am learning from her.  What a crazy world.

Bottom line, it looks I have found the place to treat me, the Mayo Clinic in Phoenix, Arizona. GTC, I am happy to be there.