Tuesday, September 8, 2009

The Battle With the Beast

Well I'm now dealing with the nadir from chemo. The nadir is the lowest point when your blood levels drop including your white and red blood cells and your platelets which help you to clot.

Because of the lack of red cells which carry oxygen to everywhere in the body, I'm short of breath, extremely fatigued and can barely even move on some days. I had a few good days last week and so when a day like this shows up again it can be very discouraging. I usually cry because it isn't two steps forward and one step back but more like ten steps back.

I try to remind myself that this is par for the course, that I have to allow my body time to heal. But so much of my life has already been on hold. So much if not all of my life has been consumed with daily visits, actually twice a day for external radiation treatments, visits to the hematologist, tests and other procedures that I'm just tired of it all.

During my first round of chemo I received the standard 5-FU and Mitomycin. This was delivered via a chest port which had to be inserted under the skin and allowed for connection of an infusion pump to slowly deliver the deadly chemicals over a period of four days. After the second day, I was supposed to return to the hematologists office and have the pump refilled with the next two days of solution.

Imagine my astonishment the night before that visit when I opened the fanny pack, took out the pump and saw that there was more than half the fluid left. The following day when I arrived at the hematologists and showed the nurse she went white as a sheet and immediately got on the phone. Long story short, the previous nurse had incorrectly set the pump and I had been under-dosed for two days. This meant that in order for me to receive the required dosage of the 5-FU they would have to triple the rate of infusion and basically overdose me for the remaining two days.

During the following week the hematologist said that the mouth sores, a common side effect were probably the worst he'd ever seen. Within a few days my ankles had swollen up so severely that I had pitting edema and was instructed by the hematologist to go to the emergency room. He was afraid I'd developed a blood clot in my leg, also a side effect of the chemo.

They did an ultrasound which was normal. Then the focus shifted to heart damage and congestive heart failure. I had to undergo an echocardiogram which also proved to be normal. Still the shortness of breath continued and I was put on a diuretic to help reduce the ankle swelling. While I had received the required dose of chemo during those four days, the fact remained that I was overdosed for two of them. How could that NOT have an effect and be causing all these new symptoms?

The hematologist informed me he would have to reduce the dosage on my second round of chemo because of these reactions. Well that couldn't be good. How was this going to effect my prognosis, my outcome? Could this "mistake" now cost me my life because I could not receive the necessary amount of medication during the second course?

It is upsetting enough to know you are in the fight of your life but to then have someone, through carelessness, make a mistake which could potentially compromise that fight is devastating.

Next week I will return to have my blood counts checked once again. I am hoping that they have increased to a level that would allow me to have this chest port removed. I'm also hoping they are increased because that would mean I will be feeling better and have increased energy and strength to get through the day, each day, one at a time.