Because of the type of insurance I had chosen, my primary care physician at the UCLA Medical Center was only five minutes away from my office at UCLA. This proved to be important because it meant that I got referred into a tertiary care clinic ON THE DAY I WAS DIAGNOSED. Without doing anyting extraordinary, I'd probably done the most important thing for successful treatment of IBC which has become Rule 1.

Rule 1: Get connected with specialists as quickly as possible after you're diagnosed.

Within five days I had a confirming mammogram and an excisional biopsy. By the following Friday, my favorite surgeon had connected me to the woman who would become my favorite oncologist. In a three hour conference, she found out more about my health history than I knew existed. By the end of that conference, I had found an oncdoc I felt would do a good job advocating for me and was headed to participate in the first of several protocols that would govern my treatment.

The first challenge was to organize a BUNCH of tests and have them completed by the following Tuesday. To this day, I have no idea how I did this, but it marked the first piece of my medical bureaucratic education and became Rule 2.

Rule 2: Do it yourself.

In the years since, regardless of the medical situation, I've continued to schedule all my tests myself. One of the important things I learned during the process is to schedule as many tests around the same time as possible, even on the same day, so you don't wind up thinking, "I've got yet another appointment today," which can do serious damage to your mental state.

The first set of tests included bloods (of course), a bone scan, a CAT scan, an EKG, and a chest x-ray. In addition, because of this first protocol, I had a PET (Positron Emission Tomography) scan as part of my participation in a research project. I found this particular scan very interesting because I'd spent seven years doing image processing while I was at the University of Florida and this was something where I could understand the technical ins and outs and thus had something to hang my curiosity hat on.

Tuesday afternoon, I met again with my oncdoc and she went over the test results with me. She pronounced me fit to start chemotherapy on Wednesday, as soon as we finished all the permissions and paperwork. One of those documents was a statement that I understood that chemotherapy might make me sterile. Given that I had been told that I was perimenopausal about seven years previously, I didn't think this was any big deal, but signed the paper anyway. This became a running gag in my future medical treatment because I have yet to have a clear understanding of how one person can be made sterile more than once! ;-)

The chemotherapy I started the next day has had various names. Initially, it was called neoadjuvant chemotherapy. Now, it is most commonly called induction chemotherapy and is performed before any surgery beyond the biopsy takes place. I didn't know then that part of the reason for doing the initial chemo was to determine whether my disease was susceptible to chemotherapy and the docs needed something to measure (part of the reason for the PET scan) to make this evaluation.

This was also the time when I asked what we'd do if this came back after the chemo and surgery. At that time my oncdoc said that we'd find the most powerful treatment at that future time and use it. This is what I now call "The Big Hammer Theory"; this is Rule 3.

Rule 3: Find the biggest possible hammer and use it.

That Friday, I also wrote the first of my Weakly Reports which I emailed to my friends so as to keep them posted on my progress. I came up with the Weakly Report because, even during the first week when my diagnosis was still being definitively specified, I got email notes from my friends saying, "I don't want to bug you, but I want you to know I care and I want to know what's happening." The Weakly Report served two purposes: they knew they could expect it each week and once they got into my mailing list I didn't have to worry about who did or didn't get the information for any particular week. Since the subject line of the email gave them a clue as to what the contents of the mail were about, they could then read (or not read) what was going on.

Rule 4: Minimize the customized information, maximize the information distribution.

Forty-eight hours after my first chemotherapy, I was PET scanned again (and also eight weeks after my first chemotherapy as well) for the research study. All of the people in this particular study received FAC on Day 1 and 5-FU alone on Day 8 for three 21-day cycles. I continued to work through the whole process. Except for the first chemo on a Wednesday so that I could get the PET scan done in the right time frame, all of my chemos were on Friday afternoon so that, if I had any side effects, I would be over them by Monday.

One of the things I learned at this point was that the medical folks wouldn't let me drive after my chemo so I needed to find somebody to drive me to and from the appointments. Since I was going to work in the morning, I asked my friend, Michael, to give me a ride to work in the morning. Then, my friend, Kitty, would show up at chemo, sit with me through the infusions, and then drive me home. In fact, most of the time, Kitty and I were laughing uproariously through the whole process. We finally figured out that most patients and their sitters didn't do that! ;-)

Rule 5: Listen when people volunteer to help and make good use of the volunteers.

Following the last chemo and the week before my surgery, I escaped Los Angeles for five days to attend a conference at the Maine Maritime Academy in Castine. I can strongly recommend an event like this as mental health therapy for anybody doing chemo! ;-) It particularly helped that one evening we played a geographer's version of Pictionary. The team I was on won, being first to get all but three of the sayings. What really helped was when my team captain, Barb, said she wanted me on her team the next time. That meant, to me, that there was going to be a next time and that my brain hadn't been totally fried by the chemo to date!

Friday before my surgery, I had my last pre-surgical meeting with my oncdoc. At this conference, she told me that I was a good candidate for a bone marrow transplant (it would be actual bone marrow at that point in time) and that we'd talk about it after I got through with the surgery.

As things turned out, being told I was a candidate for a transplant was probably the scariest thing that happened to me during the whole period of my active treatment. In 1991, such a transplant for something other than leukemia and lymphoma was not widely performed. I'd heard of people who needed a transplant to achieve long-term remission. The usual thing was that I heard an appeal on television for possible donors or for contributions to a fund to pay for the transplant. Neither of these ideas fit in with the person I thought I was!

After I sent that Friday's Weakly Report, I got a return note from my friend, Roger, back in Ontario, asking what was wrong (I hadn't mentioned the transplant in the report because I was still stunned by the mere suggestion). I called him and told him. After he recovered from the shock, he asked what all was involved. Of course, I didn't have a clue! He said that it wouldn't do for me to head to surgery in the state I was in and asked when I could call my oncdoc. I told him she'd given me her beeper number and also her home phone number. His advice ("Use the numbers") became Rule 6.

Rule 6: Don't ever toss anybody's phone number.

I called my oncdoc and, in spite of the fact that it was now Sunday afternoon and she had two little kids at home, she spent a huge amount of time explaining to me that neither of the scenarios I had in mind applied to my situation. The material to be transplanted would be my own, if I were accepted for the procedure. Also, insurance companies were starting to pay for the procedure, even though it was likely that there would be some legal activity to insure that everything happened in a timely fashion. By the time we finished, my mental state was way calmer and I was ready to head for surgery. This is the day she really became my doctor! It also was the day I found Rule 7.

Rule 7: Even if you think you know the answer, ask questions and listen to the answers.

Also, that weekend when I returned to Los Angeles, I packed up my office because I was about to go on sick leave and then disability for the duration of my treatment. So, I had resigned from my job managing the supercomputer services group at UCLA. On Tuesday, 18 June, my friend, Kitty, took me to the first of my three annual visits to the 9th floor of the UCLA Medical Center to have a right modified radical mastectomy.

Having heard various stories about surgeons who got the wrong object, I took no chances. I went in with a big blue magic marker circle around the right breast and an arrow pointing to it from a sign saying "This one". While Kitty and I were sitting in the pre-op area, the surgical fellow (whom I'd never met before) who would be assisting my surgeon came by to see what he would be working on. Kitty knew I had the magic marker sign so we both started laughing. The poor guy was definitely non-plussed! ;-)

I was out of surgery and into my room by about 2pm. I started doing wallwalkers that evening. The next day my oncdoc showed up! I was totally impressed because she normally works at UCLA only on Fridays. By Saturday, I was fit to be released from the hospital to home. The Reach to Recovery volunteer showed up at my house the day I got home, right on the heels of my Mom, who came down from near Seattle stay with me (and drive since I couldn't shift gears) for three weeks. Shortly after my Mom arrived, she told me that my sister, Dawn, had been diagnosed with breast cancer about two weeks after I had and that she had been staged at Stage II.

About two weeks after I got home, I returned to the hospital to have my staples and drains removed. I also talked to my oncdoc about the transplant and what needed to be done. Because UCLA wasn't doing transplants for solid tumors at that time, she referred me to the City of Hope National Medical Center where I ultimately connected with a BUNCH of oncdocs. As it turns out, each patient at the City of Hope has a doctor, but all of the doctors on the team for a particular area meet very frequently to review all the cases in their area. In my situation, the team had responsibility for an area called Bone Marrow Oncology (aka BMO), where patients who will be receiving a transplant following high dose chemotherapy for some type of solid tumor.

Shortly after my initial meeting with my CoH oncdoc, I received notification that I was medically qualified for the transplant procedure. At that time, the issue then became whether the insurance would cover the procedure and that was a waiting game. So, I asked whether I could do my radiation while I was waiting for the insurance company. Everybody agreed that I could.

After two days of excruciatingly boring setups for the radiation, from the end of September until the middle of November, I caught my rays each morning at the UCLA Department of Radiation Oncology. Shortly before I began my treatment, a previous patient had donated a boombox to each of the lineac rooms, so each day, I brought a different CD to listen to while the techs were setting me up. By the end of the whole process, they told me they'd never heard such a diverse bunch of CDs. It turns out that I was the first patient to bring her own music with her to the treatment. I actually did it in self-defense so that I wouldn't have to listen to their same three CDs every day and led to Rule 8! ;-)

Rule 8: You can control your treatment environment.

Once I was finished with my rays, I reconnected to the oncdoc at CoH to find out what I should do next. We worked out the payment/insurance arrangements. He said I should start the staging tests for the transplant about one month after I finished my rays, mainly to allow for my (very fair) skin to heal.

So, after spending four weeks doing test after scan after test, my staging was complete and the oncdoc told me that the process had changed from bone marrow to stem cells. He also told me how the process of extracting stem cells worked and that I'd need to get a shot every day to encourage those cells to grow. The shot turned out to be part of the clinical trial for Neupogen. Ultimately, I wound up doing the stem cell harvest over the weeks of Christmas and New Year's and finished on the Friday after New Year's. I had 30 bags of cells to be reinfused. (This is a MUCH larger volume of material than most people get nowadays because the process of extracting stem cells has been WAY improved!)

Christmas that year started with a Neupogen shot which was followed by a picnic on the beach with my cousin from Iowa and her husband. It also was the first Christmas that I spent some time at the City of Hope! New Year's Day started with a Neupogen shot and the Tournament of Roses Parade in Pasadena per Rule 9.

Rule 9: Take some time to smell the Roses!

On 7 January 1992, I became an inpatient in the BMO (Bone Marrow Oncology) unit of the City of Hope. The amount of paperwork to be done was simply amazing, including one document that said I understood that having high-dose chemotherapy probably would make me sterile. I said that I'd signed a similar document when I started my chemo at UCLA and I didn't see why signing a second one was necessary. It turns out this is yet another piece of the paperwork trail that must be travelled whether there's any logic to it or not!

My high-dose chemotherapy regimen was 96 hours of Adriamycin, one day off, three separate days of VP-16, one day off, 24 hours of Cytoxan, one day off, and then REINFUSION over two days. I was in a "regular" room for the first two weeks, meaning that I could go out and walk around the campus and that visitors only needed to wash their hands thoroughly before coming in. On the day that I started reinfusion, my white counts had gone to zero and I moved to isolation. In isolation at that time, any visitors needed to scrub up, wear a gown, gloves, mask, and hat. Now, only scrubbing and a mask are required for patients in isolation.

Midway through the reinfusion process, I decided that my hair was probably going to start falling out pretty soon because it was already incredibly itchy. So, while my nurse was out getting the next baggie of stem cells to reinfuse, I got rid of the hair. She was more startled than the surgical fellow had been by the blue magic marker sign!

The one thing each patient got to make a decision about while in BMO was the time of day for her blood draws. The choices were midnight and 4am. I decided on 4am because I habitually rise early and this would make my life more like life outside of BMO. So, after each morning's blood draw, I'd talk to my friend, John, in Florida, who, because of being three hours ahead in time zones, was actually awake and at work.

The telephone turned out to create one of the funniest times while I was in BMO as well. On Monday, the day I started getting my stem cells back, I called my friend, Nancy, in Florida to tell her I was getting transplanted. She wasn't home, so I left a message on her machine. When she didn't call back by Wednesday, I did the same again. Finally, when she didn't call back from Friday, I called again and found her at home. I said, "Nancy, I've been trying to reach you all week. I've been transplanted and everything's going fine." Her answer: "I've talked to you every day this week." To this day, I have absolutely no recollection of any of the conversations until Friday afternoon!

Newbies always ask about the side effects of high-dose. The main ones that bugged me were were diarrhea and vomiting. In spite of loads of ativan and Zofran, I still had these, though probably in reduced severity. Nowadays, things have changed so much that most patients have a feeling of being mildly uncomfortable and, perhaps, having a mildy upset stomach. Of course, when I'm talking to them, I need to be certain to say, "Of course, your results may vary!" In addition, I had fairly severe mucositis, including losing the entire lining of my esophagus. To deal with the pain associated with the mucositis, the main drug was a morphone (not morphine!) drip which I found somewhat disorienting.

Since I went through the process, I've personally talked to about more than 800 women who have done the same thing. I've noticed two other side effects that didn't affect me. The first is that patients sometimes develop a skin rash which usually clears up pretty well. The second one seems to be primarily in patients who receive high-dose cisplatin (or one of the other platinum drugs); they may lose some of their hearing. The degree of loss seems to vary and the degree to which they recover their hearing also seems to vary.

One of the things that seems to happen to everybody in high-dose is that we wind up suffering from chemobrain, for lack of a better term. It is characterized by disorientation and by really awful short-term memory. It seems to be partly the result of the various medications given to minimize the various side-effects and partly other things. One of my friends, when warned about this, took a BIG puzzle book with her to the hospital and that seemed to work so that she came home in somewhat better condition than the rest of us.

One other thing that occurs to me about the time in the hospital is the matter of Phase I and Phase II diets. Phase I is basically the high-dose chemotherapy period. Phase II is the post reinfusion period. Between Phase I and Phase II most people have a period when they don't eat anything. However, during that period, patients still receive nutrition using what I call baggie food. Officially, this is known as parenteral nutrition.

Food during Phase I was as bacteria free as it could get. Bananas (and any other fruit with a thick enough skin to be allowed in my diet) were washed in Betadene before being delivered in Saran-type wrap. To this day, I associate the smell of Saran Wrap with bananas. Any type of vegetable had to be thoroughly cooked, so no salads with lettuce, tomatoes, and other goodies were allowed. Meat also had to be thoroughly cooked. No dairy products were allowed (too many bacteria could be in them). Sodas and other beverages in cans were all right, but tea was not allowed.

Because of the bacteria limits and apparently short list of acceptable foods, except for the first day when I had chili, I ate mainly bland food like macaroni or rotelli with margarine on them, vegetables, and bread during the Phase I part of my stay. But, just as I started eating again during Phase II, I had a conversation with one of the dieticians' staff members. It turns out that the dieticians could make arrangements for just about anything within the limits of the Phase diets. As a result, the first weekend after I started eating again, I had a double order of French toast made with Eggbeaters, skim milk, and Nutrasweet, spread with margarine, and covered with sugar-free maple syrup. It was excellent and led to Rule 10.

Rule 10: The menu list is not definitive. Just ask!

I actually took a desktop computer and printer into the hospital and isolation with me (notebooks hadn't been invented at that point) and continued emailing my Weakly Report to my friends. After I got out of BMO, I went back and re-read the Weakly Reports I'd written from the hospital. I was appalled at the spelling and grammar (make that mis (spelling) and mis (grammar)....). But I did get them sent out!

On 4 February 1992, at 11:35am, ten months and twenty days after being diagnosed, I walked out of the City of Hope (with my computer) and my last active invasive treatment for breast cancer. On 5 February, I started taking tamoxifen.

These two pieces provide you an overview of my treatment and post-treatment processes, procedures, thoughts, and activities. If they are helpful for you, that's fine; but be certain to remember Rule 21. Everything that works for me may not work for you.

If you have questions about anything I've said here, please send me email at the address below.