There were some differences after all. Novantron was a pretty blue color disguising it's noxious effects. Since we've figured out the pre-meds now, there is a difference in the way Jackie reacts to the chemo. Instead of getting wiped out and kind of spacy during chemo, she now goes through the chemo very clear headed, but starts to get nauseous about two hours later. That nausea progresses to some vomiting, but some post-meds at least can ensure a night of sleep. There were points of time during this that Jackie was as regular as an alarm clock, awakening me each morning with the sounds of severe retching. Not much I could do to help though.

Another difference was the lack of cold caps this time. Even though we had decided to use Novantron (since it had less likelihood of causing hair loss), when we checked on the use of cold caps we were surprised to find that they didn't have them any more. Since there was no concrete evidence that they worked, the company that made them had stopped and the supply that the doctor had, had worn out in the intervening time. The sad part about this was that while there was no concrete proof that they worked, women's hair is very important to them. The chance of a recurrence in the scalp is extremely rare, and if the caps give you a psychological boost, what's the harm? Their lack of availability was just another factor to depress Jackie (as if feeling bad from the chemo wasn't enough).

A third difference this time was that her doctor and the associated practice had grown considerably busier in the intervening time. While Jackie had been coming in for her checkups, they were pretty much in and out visits. We now found that her doctor had less time to spend with her -- to explain what was going on and to make her feel better emotionally. And instead of being able to get chemo in the privacy of an examination room, they were now giving chemo en mass in their old conference room. They removed the table and chairs, replacing them with half a dozen reclining chairs. While these were basically comfortable chairs, there is goodness and badness in getting chemo in a group. To some extent it was embarrassing to get stuck, hooked up, and be given chemo in from of a whole bunch of other people, even if they are all getting it as well. On the other hand, on some of the days when schedules synched up, Jackie was able to share her experiences with other patients in the room. Of course, there were some days when all we saw were whiners, but that was rare.

About two thirds of the way through these six chemos, I had a business need to go to San Francisco. I thought it would be really good if Jackie and Lauren could come along. We could go early and spend the weekend down the coast from San Francisco, in Monterey and Big Sur (the entire area is very beautiful). It looked like the timing fit into a period between chemos when Jackie should be feeling pretty good. So I set it all up.

Traveling is of course tiring. But I think that the opportunity to get away, to concentrate on seeing things instead of experiencing, has a great deal of therapeutic value. While having chemo and then the recovery period between chemos the trip gave Jackie a focus, a reason to feel good, and as such it worked. We all were exhausted when the trip was over but we had a good time. Jackie had enjoyed the trip, and while physically exhausted, she was mentally refreshed.

While I developed a great deal of respect for nurses during all this, I also learned that you must remember that nurses are individuals, and that as such, you will run into some nurses who shouldn't be nurses, or at least who should not be involved with patients. I remember one time in the communal chemo room when this nurse ignored the continued requests of a very nice old woman for help in getting to the bathroom (while Jackie could do it alone it's awkward with the pole and all the tubes attached). Unfortunately, after all of her requests for help went unanswered this poor woman urinated on herself. She apologized profusely to all of us that were in the vicinity -- but it wasn't her fault, of course. I felt so sorry for her. The only justice in it all was that the nurse had to clean it all up. At any rate if you don't like a nurse you should feel free to ask that you be treated by another. It can be done discreetly -- just ask the doctor. Jackie did and it worked out fine.

It was somewhere during this run of chemo that Jackie informed me that the chemo had caused her to enter menopause. She said it matter of factly, but I think it bothered her. I think it would have bothered her more if she hadn't been fighting for her life -- and hadn't been putting up with chemo. I don't claim to understand, but it seems to me that it marks the end of an era in a woman's life. In Jackie's case, prematurely. It certainly put to rest the issue that had been on the top of our minds when all this started -- another child. It's the kind of thing where you keep this hope in the back of your mind. Everything will work out -- life will return to normal, you can pick up where you left off and carry on with your life. This sort of took some of that hopefulness away.

It bothered me -- but not a lot. It seemed a shame though. You read about these people who make horrible parents, and here was Jackie who had so much love in her to give to children -- ours and the others she worked with in the Girl Scouts, and any opportunity to have more children was now denied her. Oh well -- if we could just beat this stuff we could figure it out later. It certainly put adoption in a new light.

The other problem with the timing of this treatment was that Jackie was continuously worried about her counts, because we were bumping up on Christmas. Christmas was Jackie's favorite holiday of the year. She spent a lot of time and effort making sure it was special. This included decorating the tree (a four day affair), the house, buying our daughter lots of presents and hiding them, wrapping them, and making a big dinner for our families. I got exhausted watching her. Her concern was that she didn't want to be sick with chemo for Christmas, or to have it interfere with shopping, etc. Well, she got her wish, and for the most part during the treatment time her counts held up. They stayed on schedule and she was done before Christmas. The psychological benefits of this were immense, and they made for a good Christmas for Jackie.

While the chemo was going on I was continuing to fight with our insurance over the bone marrow harvest. Remember, we had decided NOT to do the high dose chemo yet, only to have the marrow harvested and freeze it for potential later use.

As I said our request for insurance coverage of an ABMT had been rejected. So I went back to the HR department and said "HELP -- I want to ask just for a harvest now -- please help me and expedite this." After repeated urgings and a couple of months of time I finally got an official letter from the insurance people telling me that an ABMT wasn't approved. I decided to call directly this time and said "Please deny me what I've asked for, not what I haven't asked for." The lady politely told me that she would send me another letter denying me a harvest.

By this time of course, I had contacted my attorney and had begun filling him in. He had a copy of the contract that all employees in the plan get, but said that I should try to work through the company first. Armed with my turndown letter, I asked our human resources director one last time if the company could help or if I would have to sue the insurance company. He pulled me aside and said sue -- he didn't see any help coming my way.

My attorney said that I had one more thing to do before I could sue. The insurance company had an appeals committee and so he scheduled our appeal meeting. My attorney said that the real issue was the insurance company's definition of experimental -- which they said was a treatment not generally accepted in our service area. It seemed to me that based on the letters written by Jackie's doctor, the second opinion doctor, and the third opinion doctor at Emory all recommending a bone marrow transplant (or at least the harvest), what could be more generally accepted?