Dave is my older brother. He and his wife, Debbi, live in Florida in a small retirement community near Orlando. In September, 2014, he was diagnosed with stomach cancer after experiencing some discomfort when swallowing. The diagnosis was shocking but also not entirely surprising, since cancers of the abdominal organs seem to be a bit of a curse in our family. My dad’s parents both died in their 50s of an undiagnosed disease, which might have been stomach cancer. Several of my dad’s brothers have died of pancreatic cancer and my father died of prostrate cancer, which was discovered too late and ultimately spread energetically and enthusiastically, in spite of all the treatments. A mutant gene is at large in the Adolf system which, for the moment, seems mainly to attack our males.
So Dave got the diagnosis and waited for the prognosis, which wasn’t great. The best possibility lay with an immediate and powerful regimen of chemo. If the results were good, then he would become a candidate for surgery, which would be followed by more chemo to wipe out the last of the mutant cells. We waited hopefully until the end of 2014, when he was told that the chemo had worked and he was now a good candidate for surgery. He was scheduled for early February for the 9 hour procedure to remove his entire stomach (and, it turned out, 6 cms. of his oesophagus). It was carried out without a hitch (apparently there are always hitches with this operation but everything is relative). The chemo had worked so well that his entire stomach (mostly tumour at this stage) was leather-like, a good sign. He survived and was installed with a feeding tube and a blood filter in his vein to catch errant clots, for which he would be at high risk.
The next six weeks went well. Dave has to learn to live without a stomach, which meant learning how to eat again, with a diet lacking many of the high fibre breads and vegetables he loves, and replaced with a plethora of soft, easily digested foods, many of which were drinkable. He was also fed supplements via the feeding tube. The goal was to increase his daily caloric intake to 1800 per day; then the annoying tube could be removed.
Things were going well. Dave’s calorie count was at 1200. He was walking in the neighbourhood, visiting with the many friends and neighbours who dropped by to see how he was doing. His colour was good and he was growing stronger and feeling more and more positive everyday. He reached the six week anniversary of the operation and decided it was time to have the clot filter in his artery removed—they cannot be left in indefinitely. So an appointment was made: come to the clinic on this day and the 40 minute procedure will be done with local anesthetic, no problem. Dave and Deb arrived at the scheduled time, Dave to the operating room and Deb to wait.
I can only imagine Deb’s feelings as hour after hour passed while she waited for this “simple” procedure to be completed. Dave, meanwhile, was consciously sedated and doing his best to remain still while the doctors fought with the blood filter, now incorrectly lodged inside his artery. I have seen pictures of this device and can describe it to you like this: imagine a Daddy Long Legs. Imagine a ring is attached to the top of its body. Now imagine that the legs have tiny outward-facing hooks on them. To insert this filter, an open-ended sack-like cover is pulled over the legs so they are wrapped, and a fine string is attached to the ring, which is then pulled through the vein to its resting place, where the sack is removed and the legs fall open and attach, via the tiny hooks, to the inside walls of the vein. To remove, so goes the theory, one simply reverses the process, going in with the sack, hooking on to the ring, covering the legs while releasing the hooks, and pull it home. The problem became apparent as soon as the docs spied the filter, lodged crookedly in the vein where cells from the walls had begun growing around the ring. First the ring had to be cut free before the legs could be retracted, but no sooner had they done that than the filter legs broke free from one side and attached themselves to the other. Finally, 9 hours later, they had it out and Dave was freed. His body immediately went into shock, from relief or trauma matters not. I suspect that Deb underwent a similar response internally but someone has to keep it together. She slept that night in Dave’s clinic room, completely unprepared for the stay. Didn’t even have a toothbrush.
Back home, Dave was much as you might think—worn out, depleted really, taking everything bit by bit. On the second day home, he confessed to Deb that he thought he had thrown a blood clot . She took him to emergency in the local hospital.
Things did not go smoothly in the hospital. Although there is a cancer ward on the same floor as he was, there were no rooms available, so he shared a double with an interesting parade of people. Colourful wouldn’t have describe the scene but it’s more of a story over a glass of wine than blog material. (Ed. note: Trust me, take her up on that!) Once Dave was road-worthy, the three of us would go for a couple of laps around the ward, chatting and purposefully getting Dave out of bed and off his poor rump for awhile.
If you’ve spent longer periods of time in the hospital, you know to dread shift changes and weekends especially, when anyone who knows your story disappears. Thus it was with Dave who found himself explaining over and over again what his situation was, why he wasn’t finishing lunch (“I don’t have a stomach” worked fairly well), why he wanted someone to look at his feeding tube as it was leaking too much. Some of the nurses were great but there were those who were just downright ornery. One of the latter types put us off many times until Deb reported her to a supervisor. When we showed her the soaked dressing around his feeding tube, she brought the nurse into the room and demonstrated how to do it properly and immediately. We understood that, as everywhere, they are understaffed and busy but still, this nurse added frustration to Dave’s stay. We were equally stymied, as was the doctor, when Dave couldn’t get a laxative brought up from the dispensary in less than 18 hours. Other things happened that made me want to tear my hair out. One doctor voiced his disbelieve that Dave’s operation had taken 9 hours. On another day, he doubted that Dave’s blood count had dropped dramatically. We were all pretty happy in the end, however, when it turned out he was right about the blood (Ed. note: But wrong about the operation length). A nurse had made a mistake when drawing blood and had diluted the sample. Sigh. Finally, on Saturday, we got a nurse who usually works the cancer ward take particular care with Dave and promised to move him to that ward as soon as a bed became available, which she did a day later.
We did have some good moments. One was during a discussion about what he could eat to vary his diet enough to be encouraging once he got home. Debbi said that he could eat any of the small packaged left-overs she had prepared for him. He said he had tried but couldn’t identify what the food was. Deb doubted this was possible. Says Dave, “I opened up the container and couldn’t tell what it was. I subsequently learned that it was chicken broth but at the time I couldn’t tell.” “Where the heck are we?” I say, “a courtroom? Are you a lawyer—‘I subsequently learned it was chicken broth?’” We all burst out laughing, especially Dave who was trying to restrain himself but just couldn’t do it. Hey, you have to take your kicks where you can get them. We still laugh just talking about it.
By the time I had to leave for Shanghai, Dave was still in the hospital and ended up staying another 2 nights. He’s been home now for a number of weeks and seen his surgeon and oncologist. Both of them want him to be stronger and able to eat a bit more before he resumes chemo, which seems sensible to me. His fantastic surgeon is a calming influence on Dave as he is able to explain away the various mishaps in the hospital and put his progress into perspective. As of this writing, Dave has had a PET scan and they are waiting for the results; chemo has been put off another week.
I sent him this blog before publishing for editing purposes. He told me that he got quite emotional when Deb read it to him, thinking about how his life has unfolded this last 8 months. It’s hard to imagine what he has to go through in relearning not only how to eat but also how to recognize the signs of hunger, thirst and nausea. He will pull through this if will has anything to do with it. He is completely focused and determined, not only to survive, but also to outlive his prognosis and his dad. I’m betting he’ll be around for a long time yet.