Full Disclosure: I’m writing this post while strung out on anesthesia and painkillers from having a port installed, so if I venture off into fluffy bunny land somewhere in the middle, roll with it. As you can probably tell, I’m playing a bit of catch up on these posts since it has been a mad scramble the last few weeks.
The next stop on our journey (you’re coming with me on this ride) takes us to the oncologist. We got here after MRI images confirmed I had rectal cancer. Treatment protocols call for chemotherapy and chemotherapy plus radiation, hence the need for an oncologist. Unlike a routine doctor appointment where you get 20 minutes if you are lucky, oncology appointments take at minimum 60 minutes.
In a quest to get the ball rolling, I scheduled two oncology appointments, one in the morning with my local care provider, and a second opinion at a major university medical center located about 45 minutes away from my house. In hindsight, scheduling two appointments back-to-back was a mistake; talk about information and emotional overload.
Before we knew cancer was about to invade our lives, my wife volunteered to be a chaperone for my oldest daughter’s field trip to the zoo. You guessed it, this was the same day as the marathon session with oncologists. My wife and I have traded off on chaperoning field trips since the kids were in kindergarten, so this was a tradition. Our daughter was really looking to mom being with her on the field trip, so it was a painful decision to make. Ultimately we decided that it would make the most sense for my wife to tag along to the oncology appointments (life or death) vs. the zoo. We made sure to involve our oldest daughter in the decision-making process, and she agreed that this was the best decision as well. Being involved in the decision-making process, however, did not make it any easier on our daughter. This one hit everyone in the “feels” really hard that night because it was the first time cancer had directly fucked up something in our lives, and it happened to impact a tradition we had done with our kids for several years. But after all these appointments I can confirm, having my wife there was the best thing I could have hoped for that day, it was pretty rough as you’ll see.
My first appointment went reasonably well, and the course of treatment recommended seemed fine to me, but I didn’t click with the doctor. Usually, I wouldn’t care about this type of thing, but my ass is trying to kill me, so I’m suddenly more aware of my opinions on medical providers. The one thing I love about my local provider is the cancer care coordinator; she has been so helpful over the last two weeks. She sat in the room while the doctor was explaining things and took notes so we could go over things after the doctor left. Her translation of doctor speak was excellent and calmed my nerves. She also set up all the followup appointments then and there, which was great. This appointment took a little over an hour, and they got me scheduled right away for a Port placement surgery. As to not overwhelm me with the information, they also planned a separate chemotherapy med review session.
After a quick stop at home for a bite to eat and a quick rest, it was off to the university medical center for a second opinion. There was a night and day difference, the first of which was the valet parking. After check in, they gave me a smart badge to wear so they could track wait times and my location in case they needed to find me. After a bit of hurry up and wait, we met with the oncologist. I hit it off a lot better with this oncologist as he did a much better job explaining things (he is a also a professor, so that probably helps) and had a slightly different regimen that introduced more checkpoints (imaging, blood tests, etc.) along the way than the previous oncologist. However, we did not have a care coordinator sitting in the room with us, but we didn’t really need one since the oncologist did such an excellent job explaining things.
Now that we knew both plans, it was time to choose one. It was a hard decision to choose which provider to use, but ultimately I really liked the qualifications of the rectal surgeon at the University Medical Center. He comes highly recommended by patients, and he is one of the top surgeons in the nation for this sort of thing. Anyway, I let the second oncologist know that we would be using the University Medical Center for my cancer care going forward so we could get the ball rolling.
Then it was time to talk with the RN Care Coordinator from the university to get things lined up… This is where things went south. She had 10 sheets of paper covering the chemo drugs used during treatment; she proceeded to dig into every-possible-side-effect ad nauseam. By the time this hour-and-a-half talk ended, I was scared shitless and for a minute forgot I had cancer. Why the hell would anyone take these drugs, they sound absolutely awful! She talked for so long, the scheduling team left for the day, and we left without knowing when my first treatment would start. Needless to say, this was a highly stressful conversation.
My wife and I left the university and began our 45 minutes drive home. The Fear, Uncertainty, and Doubt (FUD) inspired discussion by the university RN care coordinator made me question the decision to go with the university. I was a wreck, did I make the wrong decision?
I talked non-stop to my wife for about 10 minutes as she calmly listened to me to express my frustration and a laundry list of concerns.
Then she took my hand, and lovingly said,” It’s going to be okay.” Those five simple words disrupted my self-destructive thinking, and just like that, I knew I’d be fine.
I love my wife, she is fantastic, five, simple, but powerful words set me back on track to being the positive funny guy she met over 20 years ago. I honestly don’t know what I would have done if she didn’t go to that appointment with me. But I can confirm that my daughter made the right decision by letting mommy go with daddy instead of going to the field trip.
In case you are curious, we are taking steps to see if we can get assigned a different care coordinator, which would ease some of my concerns. But ultimately, the University Medical Center is still the best choice in our opinion.
This post hit a bit more in the “feels” than in the funny bone, so I apologize if someone started chopping onions in a nearby room for you guys too. If ‘that’s the case just blame the anesthesia and pain killers.