As radiation was about to come to a close, and as Jackie's ankle repaired itself, we now had to plan the chemotherapy treatment. So far, this was presenting itself as the scariest part of the treatments. We had both heard all the horror stories about chemo -- the pain, the nausea, the weakness, and worst to Jackie, the hair loss. Jackie had beautiful long dark wavy hair. She loved it and I loved it. It was one of her features most commented on by others, second only to what a sweet person she was. At any rate, Jackie was very proud of her hair. Maybe too proud, but regardless of all the other things about chemo, she was most afraid of losing her hair.

To set up chemo, we made an appointment with the oncologist who had met with us at the time of the original biopsy, and who was recommended by Jackie's first surgeon. By this time we had done some more research, and we had learned a little more. Not much though. After all when we went to the oncologist, we learned that Jackie had a T-2 tumor, and that the hormone survey was ER/PR negative. We also found out that she was N1 M0, and that the tumor had a 21.9% S-phase growth factor. Isn't that special? What does it all mean?

First, none of it was good. Hormone positive tumors are easier to treat, as you can usually just take a hormonal chemotherapy, although you take it forever. So that meant Jackie had to have REAL chemo, what we thought of at the time as the tough stuff. The 6 nodes that were positive were bad news, the cancer had spread beyond the original site, and we always wondered if that wasn't perhaps the result of making the tumor angry and leaving parts of it behind at biopsy time. The 21.9 S-phase stuff just meant it was growing -- and fast. That didn't really sink in until later. The other thing we learned about was aneuploidy. The chromosomes of these cells were really messed up -- they didn't know who, what or where they were, all of which led to them not having the decency to die. As the oncologist told us all this, she did so in such a depressing manner that we both felt so badly that we wondered what the point was of going on. As a matter of fact, the whole situation depressed the oncologist so much, she was virtually in tears as we left the office.

As we left and started to think about things objectively, such as the survival rates we had heard and read about, and the aggressive treatment we had already undertaken, Jackie and I decided that we needed an oncologist who was at least a little more upbeat and was at least somewhat hopeful that our aggressive treatment might work. So Jackie did some research and found a practice that had a good reputation, and although she didn't get the doctor she had initially wanted, she got a good doctor that who not full of doom and gloom.

As we went to the new oncologist we were pleased to find that he was new to the practice. This meant that he had more time to devote to Jackie. Unfortunately, as with most things, he got more patients, and that initially available time disappeared. However, with a new oncologist, we went over the story to date, all the lifetime of problems, the drug allergies, etc. -- even though at this point this wasn't the most time consuming of affairs.

If electronic records were available, it would have saved us and all of the doctors a tremendous amount of time. Plus, the information that the doctors needed would have been available immediately, no waiting for someone to forward it, etc. This system needs to include digitized images of all scans, x-rays, pictures, etc.

Our new oncologist said Jackie needed 6 treatments of Cytoxan, Methotrexate, and 5-FU. Even back then Jackie had questions about treatments that are still in clinical trials. She wanted to know about oncogene amplification, interleukin II, macrophage activation, Verapamil, etc. She studied the time critical factors of when to do chemo vs. surgery. There are those who believe that the right order of treatment is chemo, surgery, and then radiation. In our case, due to the fact that the initial tumor removal was not completely successful, it was probably best that we went for the surgery first.

The argument here is that the metastatic cells are by far the hardest to kill, and the longer they have metastasized the harder they are to kill. The timing theory says that you should get the chemo in as quickly as possible, before the patient begins to become chemo resistant, then do surgery on the main mass, and finally follow up with radiation for anything local that may have been released during the surgery.

However, none of this was to be for Jackie. Also, we received no really useful comments on the bleeding edge treatments. Jackie got the "standard treatment."

This is life or death. Treat it as such. Do not worry that this treatment may be uncomfortable, worry about being alive, PUSH your doctor. We didn't know any better at the time, but it turned out that standard treatment wasn't particularly aggressive, and we didn't realize that it was necessary to get more aggressive. Jackie got the standard treatment of cytoxin, methotrexate, and 5-fu, although even the drug names sound ominous.