Health Update #27: Season 2, Episode 2 -- Docetaxel and Ramucirumab

#WinterDriving #35ontheInterstate #LakeEffectSnow

The night before my most recent infusion, we met with Cornelia and Jack at Sava's in Ann Arbor for dinner. There was some kind of sportsball game on the television that everyone seemed interested in, a post-Rose Bowl championship game happening. We left before the college-town fanatics streamed onto the streets of Ann Arbor and started setting everything on fire. Good thing they won.

The session at the Rogel Cancer Center went without a hitch, though they were backed up in the infusion room and we had to wait a while for an open chair. We arrived at 11:30 am for lab work, then met with Dr. Q at 12:30 to go over the lab results -- all good reports in terms of kidney function, liver function, heart, and lungs. Dr. Q was upbeat about the response to Docetaxel and the mildness of the side effects which were much gentler than this past summer. We parked ourselves in the waiting room for the infusion bays by 1:00 or so for a 2:00 appointment. And waited. And waited. And waited. We weren't able to get into a chair until after 3:00 pm, and the infusion took 2 hours. At 5 pm, the day shift left, and I had to be flushed and de-ported by a supervising nurse.

The surroundings at the UofM hospital are very clinical and stressful and impersonal. There must have been at least 50 people in the waiting room, in various states of disease progression, and Fox blaring on the TV.  It seemed an unusual choice for Ann Arbor. The infusion room itself had a dozen stations, each separated by a curtain, and humble comforts for companions to wait during the infusion. It was loud and uncomfortable and, honestly, ugly. A depository of rage and fear and boredom.

The differences between the facilities at the Rogel Cancer Center in Ann Arbor and those at the Wheatlake Cancer Center in Reed City are striking. Clearly, the focus at the University center is on high-impact treatment and research. I'm contributing to their body of knowledge by being in their control group. My own needs as an individual are secondary. They are simply trying to document that Keytruda is an effective second-line treatment for Stage IV lung cancer as compared to standard of care Docetaxel. I represent standard of care. 

In contrast, the regional cancer centers such as Wheatlake in Reed City focus on patient comfort and quality of life. The waiting room itself at Wheatlake has soft colors and a soothing nature montage on the big screen TV next to a fireplace. There's coffee and tea and water, snacks and warm blankets available in the lobby/wellness center and in the infusion center itself. The underlying tone of the center is rooted in kindness and compassion. The wellness center has free services and products, from blankets made by volunteers to hats and wigs, to haircuts and acupuncture and massage therapy. You get to know the therapists and doctors and nurses who all treat you with care and gentleness and good humor. Of course there are the occasional glitches, such as staff turnover and difficulty filling positions for social workers and care managers. But even the infusion center itself is quiet with muted colors and comfortable infusion chairs and guest chairs and other amenities. They even provide free lunch (chicken salad or ham salad and soup) and other snacks. The patient experience in the hinterlands is far superior to the university hospital. Once it warms up and I finish a round of scans, I may elect to return back to Reed City. The actual treatment plan is identical at both places.

For this session, Dr. Q was able to get approval from the insurance company to add the Ramucirumab to the infusion. We’ll get a better sense of which side effects come from chemo and which ones come from targeted therapy. We had dinner at the Gandy Dancer again, a nice restaurant inside the old train depot. But by the end of the evening, I was beat and headed to bed early. 

For that first week after the infusion, I felt like the side effects were worse than the first round, but luckily I kept a daily journal of side effects after the December 19th infusion, and when I looked back over my notes I saw that the effects were similar day by day. Without the notes, it would have been difficult to remember the pain and discomfort. Memory is an unreliable narrator. 

For both sessions in this cycle, the first few days I would feel ok, then the fatigue and shortness of breath kicked in with a vengeance and I would spend the next few days in bed, creaking and moaning and taking Dilaudid like Tic Tacs. Then the pain and fatigue progressively lightens up in weeks 2 and 3, then back for another infusion and it starts all over again. Every 3 weeks will be this way. Day 4 of the cycle was the worst. I was supposed to go to a writing retreat that weekend in Scottville, but the winter storm cancelled all but the Saturday session, and by Friday night when the bone pain kicked in, I knew I wasn't going to be able to make it on Saturday. I ended up not getting out of bed and taking 8 mg of Dilaudid every 4 hours to keep the pain at bay. 

We drove back to Chicago on Sunday evening in the midst of a winter blizzard white out, mainly going 35 in a 75 mph speed zone. We stopped at the Tello Italian Bistro and Wine Bar in South Haven to let the storm blow over and made it the rest of the way without incident. 

South Haven, MI

Skating on the edge of the storm

I ran out of anti-depressants several days ago, and have tried to fill it now at 2 different pharmacies, but end up leaving whatever town I'm in before it's ready for pick up. I was finally able to fill it last night (150 mg of Effexor/Venlafaxine), but still, today I found myself sobbing uncontrollably at small things: a video from 7 years ago of Ben Ellis, serenaded by students during his final week; the video from the Wheatlake Cancer Center; a moving letter from a colleague. Weepy episodes all in one day.

At times like this, the cancer seems cruel. I find myself flailing around, saying, "Wait. Not yet." And then I take a deep breath, center myself, and ride the inevitable waves. 

I started this blog for purely practical purposes -- to leave a record for those close to me who want to know how things are going, as well as for colleagues and friends and acquaintances who have reached out to offer kindness and comfort. I worry that I overshare at times, or that I grow dark and hurt those who are trying to support me. I worry that memories of my illness will overshadow who I was in the before times. I find myself forgetting who I am or who I was -- outside of the cancer and fatigue and frailty. But still I persist. The cancer is always there with me, like some kind of old and grotesque pet, curled in a corner most of the time, occasionally chasing bunnies in its sleep, or startled awake now and then, a whirling dervish, barking with rage and fear before settling down again into a restless slumber.