Day to Day

The Oncological Nurse asks, "So how many more treatments until your done?" That is standard chitchat in the chemotherapy infusion center. Usually treatment is a series of radiation treatments or chemotherapy or the two in combo with some surgical procedure, a mastectomy perhaps, or nodes taken out, a section of colon gone.

For me they have no end game. Usually death is the end in pancreatic cancer but I am not going that way though we all must eventually.

I will keep going as long as the chemo is effective and tolerated. Effective means that the tumors are under control. The doctor and I are watching for this by looking for signs of growth on bi monthly PET scans and CAT scans. These scans can be very inconclusive as the former measures activity of cells so it shows that tumors are not rampant (which is good) but it does not indicate they are gone as we have seen before. The Cat scan gives us a physical description. The description can be misleading, as the pancreas is so deep in the body and the tumor so small. But it definitely changed for the scan when it came back this fall. We watch for pain in the abdomen from tumor pressure. But the indication we watch most carefully and seems the best predictor for me are the tumor markers in my blood. There are CEA markers and C-19-9 markers. The latter change dramatically depending on the effects of the chemo agents. When I began chemo with the agent Gemcitabine in August 2003, my markers were pushing 600 units per ml of blood. When the chemo the agent was effective the dropped into the 200's then the 100's and then into the range of those who do not have cancer, which is 0-40 units per ml of blood. That was great of course, medically speaking.

This fall those numbers bounced back up to 233 units of C19-9 and the CAT scan confirmed it (but not the PET scan). So we switched to another two-agent therapy using Gemcitabine, as before, coupled with Oxciliplatin. Fortunately it has been effective. I give blood to check for tumor markers each month. That is we check after every two infusions of the agents into my body. My markers went down to 200.3 then they went down to 159.9. This is a good trend as the gap between the numbers increases month by month. I just gave blood yesterday. It is hopeful that these numbers foreshadow a big die-off that the numbers will drop will drop down to something that looks like remission. So I will wait a few days to here what the new numbers are from this latest sample.

I say I that I hope for something that "looks like" remission because in oncology, remission is measured in terms of tumor size as it appears in a CAT scan. As I have said my type of tumor is notoriously difficult to measure via the CAT scan, so cautious physicians much less freely use the terms "remission" or "partial remission".

Tolerance is a measure of my personal experience of the therapy and my body's tolerance as indicated by measurements of blood health and vital organ function. Every two weeks I go in and I chose an arm to have an IV needle inserted. "Is that ok?" asks the nurse. "What are my choices?" I think. "Fine" I say. I sit and read and write and pee a lot for six and a half hours of infusion. All other patients come and go. I leave feeling sick. I am sick for four to seven days with fatigue, headaches, body aches and nausea. It takes lots of energy to hang on during recovery and remain human. The platinum based agent causes neuropathy. My arms and feet feel as if they have been caned. My throat and hands and arms are very sensitive to touch and cold. Nausea from the die off of my digestive system leaves me very uncomfortable in the abdomen for days even with compazine. It is a brush with death twice a month. More than that I will tell one if they are curious but who wants to know?

Whether I am feeling poorly, better or well, I live my life with my family as best as I can. I do not complain. It helps nobody. I give information to those who ask. My tolerance, personally, is from the heart and is most unquantifiable, but likely the central piece to my survival.

Other elements of tolerance are the state of my vital functions and blood health. My platelets need to be present in my blood at sufficient levels so that I don't bleed internally. The chemo agents destroy both white and platelet cells as it kills anything actively replicating in my body. I get a shot of white blood booster at the office and give my self injections in my belly at home to boost the platelets. Both of them make my bone marrow work like crazy so it aches like a bad flu. This is still working so my body is tolerating it. I am still willing to feel that flu so I am still tolerating it.

Oh that's enough. Time to lay down.