Friday 12/21

Busy day. Went to MDACC to get a compression sleeve for my swollen arm and found out they are calling the problem in my arm Lymphadima, as in swelling from backed up lymph fluid. I thought you only got that after surgery that included removal of lymph nodes. I was wrong. You can get it following cellulitis, and other infections.

Silly me, I thought that when they removed the PAS port, everything would go back to normal, and no one bothered to explain that that might not happen, EVER! Lymphadema is often chronic, and seldom goes away, even with treatment. Yet, If I hadn't pushed and poked at the medical staff, I don't believe anything would have been said to me about it, or any treatment offered.

The physical therapist who fitted me for the sleeve, and glove, also showed me exercises, and measured my arms for comparison. My left arm is 13% larger than my right , and it has gone down some on it's own, just not by much.

As you can tell, I'm very unhappy right now. Before my cancer diagnosis, my only(known) health problem was my weight. My blood pressure was low/normal. My cholesterol was under 145. I don't smoke, and hardly ever drink. I took vitamins, watched my caffeine intake, watched my weight, and was fairly active, though I didn't actually work out, I cleaned 3 horse stalls 3-4 days a week, and rode horseback 40+ hours a week.

Now, without having surgery yet for my cancer, I have possible permanent damage to my lymphatic system that could give me trouble for the rest of my life. This from the port used to poison my body in order to shrink the tumor to a size they can remove. I've quit my job because I'll have to continue on blood thinners until my surgery, and I'm too damn tired to do much of anything. I still don't know if or when they may be able to put in a new port or line of some kind for the next round of chemo. I feel like screaming, and kicking something, or throwing things.

On the bright side, my husband is home from Norway. I won't feel so totally alone now.