Plans Are Good
Plans Are Good (Until You Get Punched In The Face)
In My Bloodstream: Lisinopril, Amlodopine, Omeprazole, Tamsulosin and Keytruda - and now Yervoy, Anti-diarrhea and Prednisone
On The Stereo: More Hearts Than Mine: Ingrid Andress
As we approached my 75th birthday in mid-July, both my bride and I were feeling some amount of stress. I was scheduled to receive an infusion of infliximab on the 19th. The drug was being used, sparingly, to super-accelerate one's immune system to allow the body to rid itself of internal bacteria. If successful, intestinal issues would disappear in about two weeks.
My stomach issues had been escalating, and I would not be given Yervoy again until the diarrhea could be remedied. The infusion would take several hours and was considered quite dangerous. I would be monitored throughout the process and we never had a strong consensus from the cancer docs that this would be a good thing. In fact, it was a last resort.
I had been tested for c-diff, a nasty stomach virus, but had been cleared of that possibility. Something had to be done. Time wasted was the enemy.
Kristin and Doug had phoned the previous week, to see if we would make the trip to Raleigh; or should they return to see us, after recently doing just that; or should we all simply stay put.
I was feeling too guilty to even consider asking them to pack up the kids and dogs and repeat the trip that they had so recently taken. Doug was very forthright in his commitment to us. The trip would be no problem for him, or his family. I was still reluctant to suggest they come, but Kath broke in.
"It is your Dad's 75th birthday and I cannot do this alone. I need you here." 'Nuff said.
They arrived on Friday evening. They could only stay until the 22nd, as they had to return for Avet's birthday and to get him ready for school the next week.
On Monday, July 19th, I received a call from the infusion scheduling people. I had been scheduled for an afternoon session, by the oncologists, and the drug could only be given in the morning. Something that they obviously did not know. So I had to be re-scheduled.
Due to the short notice and a heavily occupied infusion center, I would be required to travel to Moffitt on Tuesday afternoon for blood work, and then return the following morning for the poop-stopping infusion. Supposedly, within the following two weeks, the problem would be gone, most certainly.
Now, with our kids here, I was going to be away for two of their days with us. And Kat was not going to let me go alone. This planned visit was not going well.
The next afternoon, we drove to Moffitt and checked in. My first appointment was for the blood draw, and then, about an hour later, I would see the physician's assistant, who would check the results and allow me to check in the next morning for the show-stopping infusion. This poop parade needed to be over.
We went to the blood-draw area and waited for about 40 minutes. I was becoming a bit agitated, and just as I headed to the desktop to complain, a nurse came to see us.
They had no orders, and were waiting for a response from the medical team. I told her that the receptionist at the front door knew why I was here. The receptionist at the desk in the blood draw area checked me in. Why did someone not tell me that I did not have this appointment? She apologized and advised me that there should have been orders. Something had slipped through he cracks.
They had sent a notice asking for new orders to the oncological team. So far, they had not heard back. She asked if I would wait a little longer, and they would get the problem fixed. We waited. I was in a slow burn. But my agitation was gaining momentum.
My punch in the face. So much for plans.
Eventually, the nurse returned and told us that we did not have to have my blood checked, and we should head up to the fourth floor to see the P.A.
I did take more than a moment to apologize the the nurse for my heated attitude. I told her that I was not upset with her, personally, but that we had left our family who had come from Raleigh to be with us, and here we were. The blood work was deemed so critical that we had to reschedule and drive to Tampa to have it done. Now - for whatever reason, I did not need to have it done. Really!
When the schedule was changed from Monday until Tuesday, someone had not included one of the attached orders - the blood work order. The very reason I was there. An oversight, usually fixable in short order. But that day, the oncological team were all busy on the floor, and had not picked up the message of a problem, which could have been quickly and easily remedied.
On the cutaneous floor, I checked in and asked if I even needed to see the P.A. as there were no blood sample results to approve. The receptionist said that she would check. I told her that I would like to leave, so I would appreciate a response.
I knew, immediately, that this was going nowhere. We found some seats and waited. Time was marching on, and we were now headed for the dinner hour. My eyes had to be vibrating.
Civility was slipping from my grasp. A rage was building. More waste of time. Rules followed. Logic ignored. Being treated as a case number and not as a person. A human being. Block by block. Piece by piece. And it was almost beyond salvage.
The combination of poorly interacting drugs combined with my frustration of wasting even more time had pushed me to my limits. I was one stubbed toe away from being carted away in a straight-jacket. My bride asked me to take some deep breaths. And breathe out slowly. And I listened. And I did.
I was, eventually, called in for my vitals. The nurse took my blood pressure and noted that it was higher than usual. She asked if I was under any stress as a result of this visit. I looked at Kath, who, by her look, returned, was begging me not to tilt on this poor girl.
I told the nurse, "a little". It had not been one of my better days.
We were shown to our examination room, and soon, the P.A. came in, and we reviewed my records. It seemed to be more thorough than normal. And it seemed much longer than usual.
Of course it would have.
We then discussed the day's problems, our family issues, and most importantly, that my ongoing diarrhea had become manageable over the past weekend and on into this day. I was having one bout in a 24 hour period and for the past week, I had only had two multiple aftersquats. A much improved situation. One bout a day of loose stools was not considered a diarrhea problem. She asked if I would mind mind if she left for a moment to consult with my oncologist, which I did not. And she did exactly that.
Shortly, she returned, and advised us that we could forgo the infusion if I believed that I was improving, without it. She did not like the idea of this infusion anyway, and was visibly pleased that I chose to skip it.
She wanted me to return to the blood testing area, on the way out, and then changed her mind. "Head home to your family", she said. She knew that we had had enough. And her assessment was so right. It had to be her best, most humane, decision of the day. I found myself actually smiling again. Not overtly, but subtly. A crack in the armor. The dragon will wait. We will continue our fight. But just not on this day.
In my business life, I had always hoped for the best, but planned for the worst. In my cancer-ridden, personal life, I only wanted to be with my family. An absolute necessity. I had been taken to the extreme end of my patience. And beyond. It would take time, and maybe even a Macallan to bring me back. Kat and I headed to our car. The absolute insanity of the day still pressed heavily on me. We had to get control of our lives again. I began my search for calmness. It was not going to come easily.
We headed home. If there were an upside this day, it would be waiting for us there.
And we waited all week for some depressed guy named Fred to drop by, or maybe even Grace, who was following behind, at a safe distance. He has been described as a bit of a wanderer, and appeared uncertain of where he is going. He headed wearily into the Gulf, and then north to the panhandle. Grace, always the follower, kept a safe distance behind, but could not keep up, and chose Mexico as a better place to land.
Thanks to their lack of conviction, we had a few evening temperatures in the 70's and daytime in the low 80's. A nice breeze and no rain. First time I had ever thought of a depression as a good thing. Live and learn.
Oh, well. We have no plans for this week, but for another Moffitt visit on the 19th. Blood work, a meeting with an oncologist and and a Yervoy infusion. I need this infusion. The question now is, do I have any faith left in this visit going smoothly.
Still undecided.
Thank you
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