I showed up on schedule after having driven three hours through dark, then early morning light filtered through sub-zero air. Downtown Rochester was sort of a mess with snow piles and construction teaming up to restrict the flow of traffic. I had to park in the Grahm ramp which extended the subway walk to about two city blocks. Not really that far, but I had not slept for thirty six hours thanks to 40mG of dexamethazone, the weekly dose.

As usual, there was not much of a wait to get blood drawn. Nine vials this time around. Usually it is just three, but this time we were looking to ensure I was ok for a phase one clinical study of the CAR-T type. So there were almost thirty tests to run on the samples. It was less than twenty minutes to finish up and for me to head to the next area. So off to get an EEG I went.

The EEG took only about 20 minutes all told. Nothing exciting there. I stopped to pick up a Chai Tea Latte on my way up to the 10th floor for the consultation visit. This is where all the paperwork gets signed. About forty pages of stuff that explains what the study is about, who is funding it, what my responsibilities and rights are along with the responsibilities and rights of the research team. Sign on the dotted line and all is well. Or not….

My oncologist stops by to say hello and ask me how it is going. I tell her that most everything is fine, though there has been a fair amount of edema in my right foot. She and the PA decide they want an ultrasound of my right leg just to be sure that I don’t have cellulitis or some such complicating factor. It gets scheduled in between my next two appointments and all I have to do is shorten lunch a bit. Lunch and the hotel room are paid for by the study, and my travel and such things will be for the length of the study. That was all part of what the consultation was about too. This CAR-T study was going to be good! Or not….

They took a long time to do the ultrasound, starting high on my right leg near the groin and working all the way down to my ankle. The tech running the system seemed fairly new at it and received some help from the other tech in the room. It took more than an hour to finish the scanning, after which I laid there on the table for another half hour while the radiologist read the results.

They sent me to the emergency ward over at St. Mary’s.

I was upset, angry. I now have blood clots in my right leg. And fairly extensive too. This is not uncommon for cancer patients, in fact it is fairly common. I knew that too. But one does not borrow trouble when living with cancer. If it is only a potential problem, then one leaves it at that until it is no longer potential. There is enough to deal with considering the current ongoing treatment of cancer without looking at all the potentials. It is enough. Or not….

The ER folk were efficient and professional. I was a mess. I just don’t need more shit! Fuck! Fuck! Fuck! Is it not enough to have cancer? Apparently not. Now there are blood clots. Shit! CAR-T studies do not accept patients with blood clots. I am no longer eligible. I know that. It was one of the criteria I had skimmed through on the paperwork I signed. Shit! I wanted to be part of that study! Genetic modification of leukocytes such that they attack tumorous plasma cells generated by the type of myeloma that I have. Very cool stuff with the potential of extending my life for a good two years. All while adding to the body of knowledge which for some reason is important to me. Shit! Shit! Shit! The anger and disappointment turn to rage, and then exhaustion.

I drive the mile or so to the hotel, check in, take my backpack to the room, and sit there numb. I am too fucking tired to feel anything. I give myself a shot of heparin as instructed. It is easy to do. One does not even feel the needle slide in or the liquid enter the abdominal fat. It is just a subcutaneous injection. It burns after a bit, but that diminishes too. I have seven days worth of injections. Guess that is what I will have along with the rest of my meds for breakfast in the morning. Great! I am tired and feeling beaten, feeling sorry for myself. I generally don’t allow that, but I am too tired to fight it. I fall asleep. I just don’t care. I am uncomfortably numb.

I wake at 04:00. Still tired, but slightly less numb. I fire up the laptop and try to be productive, then curious, then entertained. It aint working. I fall asleep again and wake at 07:30. Take a shower, pack up, head back to the Gonda building for an appointment with another specialist. He is good, damn good. By the time he is done talking to me, I am comfortable with having blood clots in my right leg. He offers up another phase one clinical study. I sign up. What the hell, why not?

I have settled down a bit. The talk with the Dr. puts me back in control. I need that. That is what yesterday was about. The rage, the disappointment, the numbness. They are my reaction to being utterly out of control. Losing control over time is one thing: Having it disappear out from under me in the short time it takes to have a diagnoses delivered is another. I don’t respond well to that. Rage keeps me going through it, but not in a rational, logical manner. Outwardly, it is probably not all that obvious to a stranger, but anyone who knows me would see the weakness.

I leave for the next appointment which is with my oncologist and the study coordinator. They inform me of what I already know: I am not eligible for the CAR-T, nor will I ever be eligible for any CAR-T study. So much for that direction. However….

The numbers from my blood work show a decreased kappa light chain count. This is odd because the count had been increasing in spite of the fact that the protocol I was on should be working. We theorize that the radiation treatment to my skull where a large lytic lesion had been forming resulted in a substantial setback for the cancer. The radiation knocked the disease back far enough that the chemo could catch up. We decide to continue the current study. It is not impacted by the blood clot issue, and perhaps it is working? We will go another month.

I leave Rochester by 13;00. One more medication to take twice a day being the only real change in treatment. I stop at Kwik Trip for gas and a new set of sun glasses. It is a bright, bright, sun-shiny day. I am settled down now, doing the one thing I am really comfortable doing: Going to my next destination. As long as I keep moving, I am OK. I don’t think about tomorrow. Only where I need to get to today. I have turned the blood clot issue into a form I can deal with, technical. As long as I keep this disease and its side effects technical, then it is just an engineering problem. Systems engineering on one of the most complex systems we know: Our own bodies. It is fascinating stuff. The chemistry, the biology, the genetics, the whole damn thing is simply amazing.

Yeah, I am settled down, back in control, and driving. There is a place I need to be and I am getting there….

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About Author:

Retired automation engineer (having had many roles leading up to that). Interested in agriculture, economics, cancer research, philosophy, embedded systems and SOC(System On Chip). Enjoy the family farm and my grandsons and playing around with Raspberry Pi and Arduino systems. A bit of web programming in Perl... growing plants.... and too many other things to list.

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