Update: Sunday: August 4, 2019:
We’re back home & feeling better.
Here is a recap of Fred’s week:
So Fred finally got his bed in the Oncology Ward on Wednesday night (7/31). The staff there was amazing and super friendly. Fred had a roommate who was way worse off than he was. In fact, I think everyone in that ward was way worse off than Fred. That was sobering to experience! But also, it was encouraging to know that Fred is still doing so well in comparison.
On Wednesday night we arrived so late that all the specialists had gone home already. Fred’s initial diagnosis was a partial blockage of the small intestine but we really didn’t know the cause. Our main nurse (also named Fred) explained to us that the blockage could be more cancer or simple inflammation. (We later learned that even pressure applied to the bowel can temporarily paralyze the bowel and cause food to back up).
So Fred’s first course of treatment was to assume it was caused by inflammation and “rest the GI tract” by not eating or drinking anything for 48 hours. If it was just inflammation, the bowel would unparalyze itself without the constant irritation of passing food/liquid. Fred was tucked into bed and plugged into an IV bag of fluids to keep him hydrated through the night.
Fred tried to send me home around 8pm but I was not having that. Nobody in my family spends the night alone in the hospital. It’s Irons’ Family policy. We just camp alongside you, as long as it takes. The hospital didn’t have any of the fancy reclining side chairs available so by about 11pm, Fred had invited me into bed with him. Nobody told me I couldn’t and I certainly welcomed the invite. That is not the first time we have slept on a twin bed together. 😜👍
On day two, Fred was still on the no food or drink protocol. It was a long, slow day. Fred was starting to feel better though as his pain was beginning to lesson. They also began treating his cough with albuterol treatments through a nebulizer. That really helped Fred breath much better. His O2 levels were almost back to normal.
Around 3pm that afternoon, Fred had an x-ray of his abdomen to see how the blockage was doing. It looked a bit better, like things were starting to move again. They let him have clear liquids for dinner that night. He really enjoyed his cup of broth and jello!! They were hopeful he was moving in the right direction for a positive outcome. That night nurse Fred gave us sleep masks and ear plugs to help us cuddle more comfortably.
On day Friday, Fred got to have a semi-solid lunch which consisted of pureed soup and ice cream. They told us he could be released that day if lunch passed smoothly through the blockage. Just after that, we met Dr. Samra who had examined Fred’s x-rays. She told us the cause of the blockage was the cancer growing into his peritoneum and small intestine. The peritoneum is the protective sac that holds all the organs in the abdomen. It connects everything like a thick, cushy spider web. Dr. Samra saw a lot of new cancer. The cancer was growing and pressing on this section of bowel, which paralysed the bowel, and caused a blockage. Two days without food or water allowed the bowel to relax and for the moment seemed to be unparalyzed. Treatment wise… With a single, normal blockage, she could do surgery to put a stint in the bowel or remove that small section. However, with the amount of cancer Fred has in this area and the speed at which it is spreading, surgery is not an option for Fred. The surgery is too risky and the likelihood of an immediate recurrence is too high. So basically, she told us a liquid/semi-solid diet was the only remedy she had for him. And that is basically trial and error. We can slowly increase the viscosity of the food and see how much he can tolerate, but with the size of the blockage he still has, Dr. Samra doesn’t think he will ever go back to solid foods.
The news was hard to take. The thought of never eating a cheese burger again or a bowl of spaghetti and meatballs was pretty devastating. Especially since Fred had been looking forward to spaghetti and meatballs all week!
Just then, almost on cue for a comforting distraction, Fred got a flower delivery. It was from Michael and Marey (Fred’s brother and his wife). They were beautiful Unicorn Roses!
That lifted Fred’s spirits. Then we found out that we could go home that afternoon. That also made him feel better. And while we were waiting for the nurses to unhook Fred’s port from the IV and draw up his release papers, John Manduca and Anne-Marie Strachan made a surprise visit to see us. They drove up all the way from the Gilroy area. They hung out with us while we waited to leave and then accompanied us back home. It was a great transition back home, like a mini-welcome party.
So now we are home. Fred is still feeling better. They gave us a nebulizer so he can keep up with the albuterol treatments. We are experimenting with his food to see how much viscosity he can tolerate. Pudding is about the max so far. Meal replacement shakes seem to be too thick but chocolate milk and tomato soup work well. Figuring this out certainly makes this adventure more challenging but Fred is up for that. He is embracing this journey and rolling with the new changes that each day brings.
We are going to talk with his Oncologist, Dr. Behl, to see if chemo is still reasonable given that the cancer has spread so far, so fast. This week has brought the realization that this cancer is becoming more aggressive. This blockage was the first big drop on a rollercoaster.
The last month has been like the slow, methodical climb the coaster makes as it clicks up the tracks just before the first big drop. You’re anxious but you think, “Oh… Maybe this won’t be so bad.” And then the bottom drops out. There is that peaceful moment of weightlessness where you take your last full breath, and then your stomach leaps into your throat as you plummet into a panicked freefall. I am frozen in the panicked freefall but Fred is leaning into the wind, still positive and upbeat as always, just thankful to be alive and enjoy each day the best he can.