Continued from ....
Fourteen Years from Diagnosis; Doing Fine, Thank You!

Unlike many patients who receive a transplant and who have a significant other, parent, or child to help them recover after they come home from the hospital, I did not have anybody living at home with me. My Mom was with my sister who was receiving her own chemotherapy. I did have a very good lady just down the steps from my house who agreed to be my emergency ride, if one were necessary, and who also agreed to take me to the bank and the supermarket during the first couple of weeks I was home. Since this was the time that Los Angeles was beset by the Great Deluge of 1992 which included flooding of the Sepulveda Basin and huge mudslides in the coastal communities, her help was particularly valuable.

Before I'd gone into the hospital, I had stocked up my freezer with my favorite frozen foods, figuring that I probably wouldn't feel much like eating or cooking right after I got home. Given how particular the medical staff had been about my not gaining or losing weight while I was in the hospital, I was surprised to find that I was neither incredibly hungry nor incredibly full when I got home. I'd been dreaming about peanut butter and jelly sandwiches in the hospital so the first lunch at home was PBnJ with a giant glass of skim milk. They were wonderful!

Rule 11: Make your food dreams come true when you get home.

One other aspect of eating when I got home didn't go as well. The other food dream I'd had in the hospital was one of my chunky salads -- crab meat, tomatoes, cucumbers, green onions, and mushrooms with a balsamic vinegraiette dressing. Once I decided that I could deal with fresh vegetables, I picked up all the ingredients at the neighborhood grocery, took them home, chopped them up, and dove in. It turned out that the inside of my mouth was still suffering from the effects of mucositis and the cut edges of the tomato skins made little cuts inside my mouth. The acid from the tomato as well as the vinegar smarted quite a lot.

As part of the treatment to prepare patients for their very low (or non-existent) white count, City of Hope puts patients on non-absorbing antibiotics. These have the effect of killing the "good" bacteria in your digestive system. A by-product of this is that, even after you start eating again, you may still not have a completely functional digestive system. It turns out that one way to speed up this recovery (and a good hint for any patients having abdominal surgery as well) is to eat yogurt with active culture for a day or two. It helps reduce the incidence of diarrhea (in my case, two cups of yogurt actually solved the problem). The lesson from these two events is Rule 12.

Rule 12: Whether you love it or hate it, think twice.

On my last afternoon in the hospital, it became very clear that my endurance for things like walking and other activities requiring me to be in a more or less vertical position was very low. After thinking about this for a while and realizing that I am not good at meeting big goals (I do better with incremental goals), I decided that how I would get my physical strength back would be to walk to the far end of my street by the end of my first month at home. Normally, I can walk this distance in about 30 minutes and, normally, I walk it twice a day for a total of about three miles.

Because my house number ends with zero, I decided that I would walk on the street every day, going ten more house numbers each day, until I was able to walk to the end of the street. I wasn't concerned with the length of time it would take, just that I would be able to walk to the end of the street, and back, in a month. On the first day I walked to the far end of the street, it took me two hours to walk there and back just once. But, I did do it and I found Rule 13!

Rule 13: The cure for being pooped is to build up gradually to your normal activities.

The day after I came home, a flyer appeared in the mail advertising a breast cancer support group which was getting started at UCLA. My first big outing two weeks after I came home was to attend the support group's second meeting. Before I attended that meeting, I wouldn't have thought of myself as being a "group" person. But, I found two things that a support group provides: information and other people in the same boat as me.

Knowing other people with the same problem means that you have the equivalent of a big sister who has gone through the problem before you. One of the things I remember reading every day on my way to work when I was a senior in college was a carving on the National Archives in Washington which applies to this situation, "Those who ignore history are doomed to repeat it." History is at a considerably different scale when you're in the process of dealing with breast cancer than the person who originally wrote that quotation probably was thinking about, but the principle is the same. As it turns out, and as you'll read later, groups have played a really significant role in my personal recovery process.

Rule 14: Find a group!

On 5 March 1992, I presented two lectures at a professional meeting. They were not up to my usual presentation standards, but they were delivered, the content was covered, and I genuinely felt like I was really on the road to recovery. One of the lectures was called Medical Image Processing from a Patient's Eye View and got a round of applause from the audience, many of whom had been recipients of my Weakly Report for the preceding year!

The same week, I noticed that my fingernails and toenails had developed some kind of strange problem. All of them looked as though they were recovering from being hit with a hammer. They weren't bruised; they just had a deep depression at a right angle to the long axis of each digit. I made an appointment with my family practice doctor who took a look and concluded that there might be a fungus at work but for the fact that all the nails were uniformly affected. So, I called around to my oncdoc who reminded me that nails are fast-growing (well, relatively) cells and that's what chemo is designed to attack. That I should have some damage to my nails turned out to be perfectly reasonable.

Rule 15: Remember Rule 7.

For the next two months, I spent a significant amount of time working on getting my physical strength back and trying to increase my ability to concentrate on mental tasks. The former proved easier to accomplish than the latter.

Several years before I had a clue that I would ever be a transplant patient, I had a conversation with my friend, Nancy,  who was a transplant nurse. One of the questions I asked her was what people did while they were in isolation, particularly because I thought such a thing would drive me crazy. She allowed as how it probably did make people a little nuts. I said then that, if I ever had to do something like isolation, I would figure out three things I wanted to learn and then set about learning them. This was one of the motivations for taking my computer with me to the hospital while I was being transplanted. I had decided that I wanted to learn two new computer languages.

All my docs and, particularly, my "regular" oncdoc thought I was setting myself up for a fall. She actually said so! So, while I privately thought she was nuts, I also started thinking that maybe it wasn't such a good idea to set fairly complex tasks for myself. As it happened, I didn't learn the new languages while I was in the hospital or even in the time immediately following my return home.

Rule 16: Have a plan, but don't cast it in stone.

One of the very complicated pieces of my recovery was retraining myself to perform complex mental tasks which had previously been extremely easy for me to do. Until I was diagnosed, I was somewhat infamous for maintaining my daily schedule in my head; no DayTimer for me! Once I realized I could no longer do that, everything went onto a wall calendar (a little impractical to carry around). Something like ninety percent of my job has always been mental rather than physical. So, how to perform my normal job tasks would also be an important issue. Estimating when I could return to work was a big question.

This was further complicated by the fact that, at the same time, I had been thinking about the issues related to the possible occurance of a second primary tumor in my left breast as well as some problems I was having with keeping my balance and back pain. After talking to my surgeon, I found that a possible alternative was to have a prophylactic mastectomy to remove my left breast. I talked to a number of doctors and social workers as well as one other patient who had bilateral mastectomies a year earlier. I concluded that this was a very viable alternative for me.

About two months after I escaped from BMO, I had a meeting with my surgeon and discussed the options and the reasons why I was considering them. He said that the decision was mine to make but that he believed I had a good case for the prophylactic mastectomy. About three weeks later, I decided to go for it and made arrangements for admission to the hospital one year after my original surgery, the second of my annual inspections of the ninth floor of the UCLA Medical Center.

As it turned out, I tolerated this surgery much better than I had the initial surgery. Maybe it was just my familiarity with hospitals and surgery by this time, but I didn't punch the pain medication pump at all after I returned to my room from surgery and I was out of the hospital two days later.

I had decided that I would try going back to work in mid-July, so the paperwork for my appointment was started with that in mind. For the first three months, I came in at about 6am and left at 2pm for a nap. Then, I would come back to my lab in the late afternoon for about three hours. I found that I had to keep extremely detailed lists of what I was supposed to do. Tasks that previously had been trivial for me became huge. Designing and writing computer programs became nearly impossible. My schedule actually migrated into a DayTimer (which I use to this day). I went home every night exhausted and sleeping 12 hours every night. But, I was back to work!

Because of the kind of job I have, it was really important to try to get back to "normal" levels of mental activity. I spent a significant amount of time during the first fifteen months after I returned to work trying to compensate for what I couldn't do. The more amazing thing to me was that one day in November, 1993, I realized I was very nearly back to my previous performance level.

Rule 17: You may have chemobrain, but you can function at a high level with a little help.

Mental function is not the only aspect of recovery that's in your head. After having all kinds of very talented people looking out for you for a very long time and having your family and friends worrying about you during that time, ultimately, a time comes when you have to re-integrate your recovering self with your pre-cancerous self.

At least three things happen during this process. First, every sniffle or hangnail is not a recurrence of cancer. Second, the rest of the planet does not revolve around cancer. Third, the why me (not the whine me) of your particular experience needs to be resolved.

Except for the non-fungus on my nails while I was recovering during the summer and fall of 1992, I didn't have any noticeable medical problems until November. At that time, I travelled to Tampa to attend a meeting. When I arrived on Friday afternoon, I noticed that several people had severe colds and figured that I was probably going to be exposed to their germs. I didn't know then that it would happen by Sunday afternoon. On Monday morning, I awoke to a full-blown upper respiratory infection.

My immediate reaction was something along the lines of: "Oh, geez, what do I do now?" Way back when I'd started my neoadjuvant chemo, my oncdoc had said to be very careful of being exposed to the ordinary kinds of bacteria and viruses that people with intact immune systems can deal with easily. That warning surfaced almost immediately! But, given the history, I decided that, if I called my oncdoc, she'd tell me to call my primary care doc. Then, I figured out that, if I called my primary care doc, she'd tell me that I should come in if I still had a problem in a week. Since I was scheduled to see her for a regular appointment when I returned to Los Angeles anyway, I skipped the phone calls and did exactly what I would have done before I had cancer -- ignore the URI as much as possible and get on with what I needed to do to complete my activities at the meeting.

Rule 18: Every disease or injury after you finish treatment is not cancer.

After I started working in my new job at the UCLA Institute of Archæology, I had my first introduction to "new" people who didn't know me before I had cancer or during my treatment. Over the course of the next several years, a number of them made reference to me as having "triumphed" over breast cancer or as being a "hero" for confronting my disease or for having the "courage" to go for the transplant. I basically found this pretty embarrassing.

What I finally did figure out that most of these people felt they needed to say something positive about my experience and their comments reflected their feelings that they believed it would be hard to make some of the treatment decisions I had made. Only a few years later did I talk to them directly about this. I told them that I felt anybody does what needs to be done to have their best shot at long-term survival. Once that decision has been made, all the other decisions automagically happen. As my friend, Jimmy, says, "You just keep on keepin' on."

Rule 19: Lots of people don't have cancer.

Another aspect of the in-your-head recovery is the need to resolve some variation of the Why Me? (not whine me) question. This generally has several phases which range from guilt to anger to reasoning. One of the first thoughts that most people have is "What did I do wrong?" or "What did I do to deserve this?" Except for people who have inherited a particular genetic defect, the answer is that nobody knows. Clearly all cancer comes from having at least one and probably two or three genes misbehaving. But, the overwhelming evidence is that, most often, these genes misbehave because they mutate AFTER we're born due to some, usually unknown, environmental factor or factors. So, just by virtue of being alive, we are all likely to have some genetic damage. The consequence is that it's unlikely that any particular individual will ever exactly know the precipitating event that caused the primary tumor.

Simply because we don't know the causal factor often makes us frustrated and sometimes angry. Focusing this anger and frustration toward getting the best possible treatment helps to deal with the situation. But, often, it's important to find some mechanism to discuss your feelings about this particular issue and this may not become necessary until well after active treatment has ended. For me this didn't happen until a year after my sister's death which resulted from metastatic breast cancer about three years after we were both diagnosed.

At that point, I talked to several of the social workers I knew and also discovered the Rhonda Fleming Mann Resource Center for Women with Cancer , which is part of the UCLA Jonsson Comprehensive Cancer Center. Mrs. Mann and her husband got the Center started in 1992 after her sister had been under treatment for ovarian cancer. Through the Center, I found several different kinds of groups including one called the survivors' group. In the survivors' group running on 8-week cycles, women learn to deal with the psycho-social issues related to being a survivor. These include the simple fact of being a survivor when some of the patients you met as you started treatment were not survivors. They include dealing with the people in your life, job and insurance issues facing survivors, identification of other issues that affect particular women, and getting on with your life. As I noted earlier, finding other people in similar situations was really important to my recovery and this particular group helped enormously. An important aspect of this group was that, each week, the facilitator told us the topic of discussion for the following week, in effect, giving us homework. Between sessions, I don't think anybody actually sat down and wrote out the answers. But, I know that I found myself thinking about the topic as I sat at stop signs, while I was stuck in traffic, while I waited for something to happen.

Shortly after this I became more active in a group for high-dose chemotherapy and transplant patients which meets monthly to exchange information and hear speakers on various topics of interest to people in the same boat. We've taken a name, You Are Not Alone, and expanded our mission from a focus on breast cancer to any kind of cancer requiring high-dose chemotherapy. We work on educating people who are looking at undergoing high-dose chemotherapy and also on educating medical personnel who don't seem to have a good understanding of the value of high-dose chemotherapy. We've been sponsored by the Amgen Corporation which manufactures the Neupogen we all received during our treatment as well as Baxter's Nexell group as well as the City of Hope.

About seven months after I was released, I was visiting at the City of Hope and my social worker asked me to talk to a patient who was just being admitted. This was the beginning of my involvement in the City of Hope's Patient Ambassador program. This program organizes patients who have completed their treatment so that new patients have a mentor and peer counselor to work with as they go through their particular medical procedure. This is not a substitute for the social workers and medical professionals. It does provide an important adjunct to the formal programs of support because the Patient Ambassdors can be much more flexible in terms of their availability. They can also provide anecdotal information to patients which is often helpful in successfully completing their treatment and transition back to "real life".  In You Are Not Alone, we have developed a program for training patient advocates in the skills they'll need as peer counselors and mentors.

Rule 20: You'll find your place in your restructured world, it just may take a little time.

One of the issues I've confronted from Day 1 is the matter of diet because I was diagnosed with hypertension (high blood pressure), hyperglycemia (diabetes), and hypercholesterolemia (high blood cholesterol levels) during the staging tests for my breast cancer diagnosis. The practice where my primary care physician is located has a dietician who helps newly diagnosed diabetics understand how to organize their diets. When she learned that I also had blood pressure and cholesterol to worry about and I asked what I needed to change because of those conditions, she went through all three sets of diets with me. In addition to being extremely similar, all three were quite similar to the dietary changes recommended for patients being treated for breast cancer. In summary, they are:

• 100 grams of protein per meal (this is a piece of chicken or fish about the size of the palm of my hand -- approximately 3.5 inches square -- and is also about the size of one-quarter of a dinner plate)
• complex carbohydrates (this is enough rice or potato to cover another quarter of the dinner plate)
• vegetables (sufficient to cover the remaining half of the dinner plate)
• fresh fruit or canned/frozen unsweetened fruit (for diabetics, to be eaten with with something containing fat and protein in order to metabolize properly)
• skim milk, sugar-free sodas, and water (skip the fruit juices)

Several of my friends have investigated soy preparations and herbal medicines as a way to insure their continued survival. I decided that those alternatives were not reasonable for me on several counts.

Because I travel quite a bit, anything that needs to be taken along on the trip is something else in my suitcase, including the utensils required for preparation. All of these processes seem to depend on regularly ingesting some particular preparation and often require some time and effort to prepare. I was not willing to take the time to do that. I was also not willing to add another suitcase to my load. So, I decided to limit my dietary changes to those recommended by the dietician. As it happens, these changes are not too difficult to implement although chefs in very nice restaurants become extremely irriated by a request for plain poached salmon, steamed rice or potatoes, steamed vegetables, and plain fruit for dessert. ;-) A real happystance is that more and more restaurants actually have these kinds of items on their printed menu.

But, I also believe life is too short to live without an occasional cheeseburger and fries, without chocolate, and without ice cream. So, I allow myself one cheeseburger each month with fries. I also discovered no-sugar-added ice cream. The particular brand I eat most often has a flavor called Triple Chocolate which is chocolate ice cream with a chocolate ripple and chocolate chunks. Another brand has a flavor called Cherries Jubilee with vanilla ice cream, chocolate ripple, and cherry chunks which also works well for me. I find that one scoop of either one satisfies the chocolate and ice cream requirements for a couple of days!

Rule 21: Do whatever works for you.

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.

Since I am now fourteen years out from treatment  for inflammatory breast cancer, it's important to understand that many of the treatments have changed in ways that make most of the treatment modalities less painful, less invasive, or less annoying.  So, now I have a new rule, Rule 22.

Rule 22:  The more things change, the better they go for patients, most of the time!

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