Where does one begin?

Constant fatigue...
Intermittent nausea...
On-going flu like symptoms...
Weight gain from steroids...
Food has no taste...
Staying out of the sun...
Increased sensitivity to humidity...
Planning life around doctor visits...


After 12 years of treatment, these are the reminders that I am and will always be living with cancer.

At first there was uncertainty.

Then, there were second opinions.

Then, there was complete reliance on the doctors.

Then, there was do your own research and make sure the doctors are on the same page.

It is relatively easy for a well educated and well experienced doctor to "drop the ball" because of all the patients that he/she has to deal with on a daily, weekly, monthly, and annual basis.  Sure, these doctors have helpers and assistants and try to help the doctor remember, but keeping track of each individual person and sorting out the various treatments/responses and paperwork is a monumental task.

I go to a teaching hospital because I want to make sure that others learn from my exposure in "real time."

For about 9/10 years of my treatments or well over 100 infusions and other needle sticks, I used the veins in my arms but after one experience of pain, I decided to have a dual port surgically implanted which I wish I had done from the very beginning, just because of the convenience and to eliminate the nurse who cannot always find the appropriate vein to use on the first attempt.

The length of time for my infusions, until recently was about 6 hours, but now they are only 30 minutes; however, by the time you wait to have blood drawn, wait to see the doctor, and then wait again for your infusion, you might as well count on spending 3-4 hours at the hospital...  even for a 30 minute infusion.

All of my infusions for the first 10 years, came with premeds to prevent nausea which included steroids and as a result, I gained 30 pounds of weight that I have been unable to lose.  Premeds also keep you from sleeping that first night or at least that is what I experienced.  Also, premeds do not always prevent nausea/vomiting from taking place, so the Oncologist should provide you with at least 2 prescriptions for nausea.

Why 2 prescriptions?

Well, my two pills can only be taken every 4 and 6 hours respectively and one pill may not work so if these pills are alternated, then I can take a pill more frequently which, in my case, worked...  and, it is a good idea to start taking your nausea pills as soon as you get home from your infusion rather than waiting until your symptoms appear.

When I waited until my symptoms appeared, I typically ended up in the Emergency Room a day later because I could not stop vomiting...  and, that is a very unpleasant experience to say the least.

What I discovered is that not only did I start taking my nausea pills earlier and more frequently, I also took sleeping pills.  Why?  Because, experienced cancer patients learn the best thing to do is to sleep through nausea/vomiting periods as they only last 1-2 days after the infusions.

Hard to believe that I have been doing this for 12 years...

More later...