Saturday, December 8, 2007


The time between the 'news' and the oncologist seemed to pass so VERY slow. It went a bit faster because when my sister got the news she jumped in her car and came over. Dixie, my sister lives in Arizona, so that was some drive. Everyone was against her driving, but she is the silent determined type. She also happens to be a hospice nurse. To say the least I am always happy to see her, but it always a bit scarey when the hospice nurse makes a housecall.... you gotta laugh once in while.

My sibs and sister in law came over and we went out to dinner and pass the time till the doctor visit. It was a surreal time as I had a deadline at work that week too. I kept going to work and trying to get things done, but accomplishing anything seemed to take more than the normal amount of effort. My mind wasn't my own anymore... the word 'cancer' seemed to be taking over my mind and every breath. It was a some point that week that I really understood the incidious nature of cancer. It doesn't kill you one cell at a time, it takes your minutes away 10 at a time. Even when I was feeling fine, I was letting cancer take my life because of the preoccupation.

That's when I decided to move from shock into denial.

It didn't last long because the oncologist confirmed the CML within a few minutes. He was very nice, but said he didn't think he needed a bone marrow test just a genetic test to confirm the CML. Since I wasn't thrilled with the idea of the bone marrow biopsy I didn't have to be convinced. The oncologist said "They have a great new medicine. It's almost a cure, but not quite. You just take this medicine, Gleevec, everyday and keep your CML in check. It hardly has any side effects." It kinda sounded like I would get a lifetime supply of aspirin and the C word would be kept at bay. Who could argue with that? The doc said this disease was not caused by anything I had ever done, eaten, not done, etc. He was clear that living near the plants and in NYC may have given me more access to benzene, but he didn't really address actual cause. He assured me that nothing I would do, including margaritas, was going to affect the disease. That qualified as good news at that point. I soon learned it wasn't true along with other things he said about the drugs.

The nurse came in to take the blood for THE test. Three vials and I would be joining the sibs for margaritas! My brother Danny and Dixie were telling funny stories about the first time they learned to take blood. I told my nurse that Dixie is a nurse and Danny was a paramedic. The nurse asked if Dixie was a nurse in Houston, I said no, she's a hospice nurse in Arizona. Then the nurse said, "Oh, we work with hospice ALL the time. They are great." The room went silent. Danny looked at the floor and Dixie held her breath. I finally said, "Really? You work with hospice ALL the time?" She realized what she said and started to backpedal a bit. Me and the sibs were laughing at this point. I just said that's what every patient wants to know that their doctor's office has frequent contact with hospice. Perhaps my next doctor doesn't have ANY contact with hospice because all their patients live to be 200... just like Lili's turtle idea!

We left the doctor's office and we proceeded to one of my favorite restaurants. The margaritas flowed and flowed. It was the best medicine around at the moment. Folks started to call and I relayed the information with as many jokes as possible to keep from falling apart with the sibs and at the local mexican place!

The oncologist said the results would be back by Monday or Tuesday of the next week. Almost a whole week of waiting. The days passed so very slow! I worked a lot to meet the deadline. We had fun with family at night. It went as fast as possible.

Every moment I could spare I researched CML. I read for a living doing legal research, so this was just a change of topic. All the websites for medical research and the FDA are already on my website favorites list. Within a couple of days I realized that taking Gleevec was not free from side effects. It was also not a sure thing that the medicine would keep the CML in remission as lots of folks seem to have 'drug failures.' Nothing good can come from something called a drug failure. I kept researching and found that the team at MD Anderson treats hundreds of CML patients. My oncologist said he had 5.

My new goal were as follows:
1) prove that I didn't have CML, but some wierd reaction to taking progesterone for endometriosis.
2) to find an herb or tea that would treat CML to avoid chemotherapy.
3) to get into MD Anderson so that I would have some of the world's best working on the task.
4) find a way to change my insurance to the PPO to have coverage at MD Anderson.
5) find a husband, since getting married would open up my access to change the insurance policy.

All these goals were in addition to the usual stuff that needs to be done. No rest for the wicked.

I made calls to cousins, friends, friends of friends to gather more information and make more headway on my 'goals.' Making proposals for marriage seemed like an odd thing to do 5 at a time, but hey... I needed statistics on my side in every way.

Denial was firmly in place, but I kept moving gathering information on the disease and all the variations on the theme of CML. I don't think I slept a whole night through and each morning when I did wake up I kept thinking it would be a mistake and a dream.

Lili told me one day, "I think this is all a bad dream, but the wierd part is that you seem to be having the same dream at the same time." I couldn't agree more.

More to come.... I will catch up to the present soon.
PS. The little girl in the photo is my great niece, Emalyn. In my mind I am constantly sticking my tongue out at cancer!


Dixie said...

Just me! I love you...

Judy said...

Although I've heard it all firsthand over the phone, I am reading your blog and held spellbound by your ability with words and getting your feelings and reactions in print! My advice: Let this be the beginning of your could be a best seller and I want to be your agent!! :)You are in our prayers everyday. Love you.