We have been dreading Monday since we saw the appointments listed weeks ago on Rick’s MDA patient portal … blood work, appointment with Dr. Karam (kidney surgeon), CT scan and MRI. It had been five weeks since Rick’s left kidney was removed and we were just ready to get back on immunotherapy infusions on Tuesday. But first post-op appointments! It was a long stressful day with lots of waiting. I guess we had both worked ourselves up into being grumpy bugs. Rick didn’t make it through the back door until 9:30 pm.
The highlight of the day was the appointment with Dr. Karam which went very well! Rick is cleared for normal activity and like a long football pass into the end zone he handed Rick back over to our oncologist, Dr. Campbell. We would see Dr. Campbell the next day. Nothing majorly amiss on Rick’s bloodwork taken a couple of hours earlier. Dr. Karam was also making us an appointment with a kidney doctor to teach Rick how to take great care of the one kidney he has left.
My big question was will Rick be able to lift things normally at some point. During the past five weeks of recovery, Rick was instructed not to lift anything heavier than a gallon of milk. Helping lift our handicapped daughter was obviously not in the program. When Dr. Karam said, “Yes, but over time,” I was excited. Of course, if I were able to hear Rick’s thoughts, I am sure he was thinking about that next great big fish he was planning to catch!
Just as Dr. Karam was about to leave I said, “Wait, we have a present for you.” You should have seen the look on his face when I handed him the plush purple “kidney pillow.” Hubby received the kidney from our grandson, Jake, after his kidney removal surgery.
“Is it filled with kidney beans?” Dr. Karam smiled.
He had never seen anything like it. Turning the kidney around, he remarked how the pillow was actually the right kidney. We all chuckled.
“I’ll put this in my office. Will you autograph the tag?” Dr. Karam said.
On Tuesday, Rick and I backed out of the driveway after Mimi left for her day center at 7 am and hopped on the HOV to the medical center. The plan was first bloodwork, see Dr. Campbell and then start back up with immunotherapy infusions. At least that was the plan. As I have explained in a previous post, the bloodwork they do for a clinical trial is so much more extensive then the normal stuff. Yesterday, three vials were taken. On Tuesday, Rick counted 16. Next we started our appointment in Dr. Campbell’s area meeting first with the nurse, then the clinical trial research lady, who asks questions and goes over lab results. She mentioned we would be entering the “maintenance” phase of Rick’s treatment. I liked the sound of that. Everything was looking like we would soon be headed to the 8th floor for an infusion when she said, “wait.” One of the tests on the pancreas came back elevated, but she would let Dr. Campbell talk about that.
First the good news … even though it has been eight weeks since Rick’s last immunotherapy infusion, the remaining small tumors continue to shrink. How was that possible? Dr. Campbell used the word “remarkable,” my new favorite word. He also mentioned the areas in the bone were “healing.” Great news! I was wondering when we were going to talk about the bone areas.
Then Dr. Campbell explained that Rick’s pancreas was inflamed. Obviously, this was not something that was screened for on Monday. His pancreas levels had previously been normal although the bloodwork was all pre-kidney surgery. Dr. Campbell explained the elevated numbers could be as a result of the surgery … or the immunotherapy drugs.
One of the other causes is drinking LOTS of alcoholic beverages. Since one of the restrictions of the trial is no alcohol that one was scratched off the list. Rick hasn’t even gotten close enough to a beer to sniff since he has gotten on the trial! Dr. Campbell mentioned that in clinical trials their goal is to “do no harm” and Rick would be referred to a GI doctor to find out what was happening with his pancreas. Obviously, the immunotherapy infusion did not happen on Tuesday. The possibility also loomed like a dark cloud that Rick could be removed from the clinical trial.
We left MDAÂ and headed home. What just happened? I wanted to cry, but no tears spewed from my tear ducts. This is just a little detour. We wanted to go straight down the road and were asked to exit the freeway. Not a great reason for tears.
Please don’t stop praying for us!