Katherine: My background

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My name is Katherine. I'm a 71-year-old single woman with no children. After high school, I entered a Catholic medical missionary community, where I stayed until the day before my final vows. Returning home, I was 27 and I found work as a reservations agent for American Airlines in New York City. While I live in California now, I was born in New York City. From there I built a varied career in sales and marketing, which eventually brought me to Southern California.

The twisted road to diagnosis

Late in 1991, my physician found something questionable in an annual blood test regarding my liver enzymes. That precipitated an ultrasound, which showed no problem in the liver, but some odd things showed up on my spine. That precipitated a need for an MRI. The MRI showed spots on the fourth and second lumbar. Almost concurrently my medical insurance changed because of a corporate decision to switch from one kind of insurance which gave us a choice of any doctor, to an HMO where we had to pick from a list.

That incident was impacted by another when I was held up at gunpoint in the parking area of my apartment building in Los Angeles. I decided I was leaving LA, and I moved to Ventura County. When I moved to Ventura County, I again searched for a primary care doctor there. Although they were given all the records no further action was taken on the suspicions of the MRI. Since I had no physical symptoms, it seemed immaterial to me. They didn't say anything…I didn't say anything.

In 1993, I suddenly developed double vision, and I was eventually diagnosed with a neuromuscular disorder called Myasthenia Gravis. Because there was a possibility that I needed a thymectomy, I switched my HMO doctor to UCLA to accommodate that possibility of surgery, since they had an expert there. There was no need for a thymectomy and still no attention to the MRI report was made.

In 1994, I say through July, I began to have some difficulty with my right leg. That increased to an extreme condition in August with increased difficulty in walking and my need for a cane. I spoke to the HMO doctor and asked for an MRI to examine what was wrong, and he said protocol required that I have physiotherapy. So I had to go through physiotherapy three days a week. I was supposed to do that for six weeks, but I think after two, it became apparent that there was something more seriously wrong. He finally concurred that I should have an MRI; and that was done in September of '94. It showed that there was a tumor that had destroyed the marrow of the fourth lumbar, and had presented a baseball-sized tumor into the body cavity. The biopsy confirmed chordoma, which is a rare bone cancer.

Finding the right doctor and treatment plan

My primary care physician then set up a meeting with an orthopedic surgeon. Interestingly, in a teaching hospital, often you're a sort of specimen, where the major physician has two-plus cronies with him who he's teaching. This happened to me. They all came in, they looked at the film, they looked at me, and out they went. A day later my primary care called me and said I was scheduled for surgery the next week, and I said, "Oh no I'm not," and he said, "Oh yes you are." I felt that I should have been told about the surgery and what to expect, etc. He said if I didn't like it I would have to change it myself, and so I did.

I called the insurance company, explained the situation, and got an exception to their rule and was able to change my primary care. That doctor arranged for a different team to take care of me, which was much more my style of communication. They came in, and I was part of the team. The doctor not only explained the film to them, he explained it to me. He clearly outlined to me that I might come out of the surgery paraplegic, and incontinent; both urinary and bowel, not necessarily, but those were possibilities. I can't say I felt I was very happy about this, but I was glad to know where I stood. I agreed to that team and they took about two months to plan their strategy.

Putting the Treatment Plan into action

So, I was put on what I call 'house-bed arrest' from September to December, while they made up their plan. During that time, I did some research on chordoma. Because of the myasthenia, I had been in touch with the World Research Foundation in California and found that they have a library of medical data that one could go in and read. Or for a small fee, one could ask them to do a survey on a particular subject and send it to you. Since I was housebound, that's what I chose to do. When I got their report, I spent my time on the telephone. Even though I had a small computer, it wasn't sophisticated enough to have a link to the Internet. So I did the research by phone after I scanned the reports that I got for lumbar chordoma. I spoke to the various doctors around the country, including a Joseph Castro. He gave me some clues on the doctors who were proficient in proton radiation, which proved to be very valuable to me when I had to have radiation treatment myself.

During my house arrest, I used Meals on Wheels. I had access to someone who would drive me to the doctor appointments that I had, and who'd also do my shopping. And I had women who cleaned my house. So, basically I was taken care of. My "family" family lives back East, so I was pretty isolated in terms of immediate family support. But I had some very good friends in my industry. One of whom, an advertising exec, showed up in a stretch limousine to take me to the hospital at six o'clock in the morning, on December the 6th and stayed with me through surgery and into ICU, where she was the first person I recognized. After the surgery, the medical team had to have me on a backboard and they had to transfer me from their gurney to my bed as if I was some kind of pancake. It worked very well. I think my friends were alarmed when they tried to find out how I was and temporarily, the hospital had no record of me as a patient. But that all cleared up and I was able to have them stop by and see me even while I was in ICU. I was only there a couple of days, then put in a regular room.

The Surgery and body cast

The surgery planned actually was two-fold; they went in through the front and through the back in order to remove the fourth lumbar, install a bone graft from my iliac crest, and a fusion from [lumbar] three to five. Before surgery, in fact before admission to the hospital, I was seen by a gentleman from one of the departments that makes casts. And so he made a body cast for me that was initially a hundred pounds; it was called a clam shell. It strapped on front and back. One could roll into it and put the top on and strap the sides on. I was allowed to be in bed without it on, but I could not be removed from the bed for any reason at all without that thing on. It wasn't particularly comfortable, and it was a real bear for the nurses to deal with, but nonetheless, we worked it out.

I was transferred after the second surgery. I was transferred in late December, because surgery was the sixth and the twelfth. About the 21st of December, I was transferred to their new rehab section where I was handled by the physiotherapy and occupational therapy staff, as well as, of course, the nursing staff. My hobbies are in art, little cut-and-paste stuff and painting. So the occupational therapist set up a little an extra side table for me with supplies of paste and paper and scissor and paint, so that I'd have something to do during the holidays when they would be off.

Living inside a body cast

Physiotherapy had the task of moving me from my hospital bed onto a rolling bed that also-- there's a name for it but I don't recall what it is. The bed can be hoisted up at the top so that one is moved from a flat position to as much as a 90-degree position. Their task initially was to get me down to the PT room and I would be slowly raised. I had no idea that if one tried to stand up after a few weeks in bed, one would collapse. So they first would work at getting me to a 45-degree angle and my head would start swirling around, and get me back down again. Day by day we did that, and day by day we'd raise it up a little more. Eventually after a couple of days, we'd play ball. After a week, I was at a position where they could get me to the end of the parallel bars that were fastened to the floor. I would walk back and forth [in the cast].

In the interim, before they did the walking part, I was in my bed. And this young man came in and I said, "Jeez, can I ever get out of this bed?" And he said, "Yeah, just hop to the edge of the bed and jump off." And I said, "How do you do that with a hundred-pound cast on?" He said, "Anybody can do that." Well, I couldn't, so I talked to the doctor about it and said, "Can you really do that?" and he said, "No, but we'll arrange for you to get some help and we'll see how you do." So it took six people, three in the back, one on each side, and then one man who was the head of physiotherapy to position my feet as they got me to the edge of the bed in the hundred-pound cast. I, myself, weighed more than 200, so we're not talking a featherweight here. As they got me up out of the bed and my feet touched the ground, that's when I knew I would be able to walk and that I hadn't lost the use of my legs. It was a very euphoric day for me. And we all cheered, as I did, I cried.

Learning to walk and live again

Eventually, as my back was healing, and I became stronger in the physiotherapy area. They were able to cut my cast down which initially ran from my arms and down to my knees. They cut it back so that I would be able to bend one leg and I'd get into a wheelchair and eventually walk with a cane. Once I could get around in a wheelchair, walk a little bit with a cane, and could do some of the simple occupational tasks like opening a refrigerator, cooking something on the stove. They had a little apartment. A make-believe apartment so you could see if you could roll around in the wheelchair, could stand up by the sink, could do the laundry etc...

I was then transferred to an occupational therapy nursing home, which was grim by comparison to the pristine new physiotherapy section of UCLA. This was great motivator to get well and get out of there. Things at the nursing home were crowded, noisy and sweet enough, but very difficult, just, just difficult. Those who were there permanently were dementia patients, people like that. It was not a particularly inviting social environment. I was there for two months, and in March I was discharged, once I mastered the ability to walk with a cane unassisted.

Home with assistance and it's setbacks

I was still given my wheelchair and there was nursing care once I got home. I still had my hospital bed, and that was set up in the dining room of my town home, adjacent to the kitchen so I could take care of breakfast. I used Meals on Wheels for lunch and dinner until my sister arrived. She stayed a week, and she came in from Florida. She had to go home because of family conditions of her own, and my sister-in-law came out for two weeks.

During the time my sister-in-law was with me, I began to have difficulty swallowing and speaking. I did not know that there was such a thing as an exacerbation of myasthenia gravis, but I soon found out what that was about. I was in and out of the hospital several times for treatment for that until, in July, I was told I either would be in a nursing home or I would have to have a full-time aide at home.

So, I arranged for the full-time aide and she stayed with me from July of '95 until January of '96. And by then, I had recovered enough to make my own meals on the weekends that she was away. I found that I could have someone do my shopping and take me on appointments to the doctor as needed, without having a full-time aide. And the women still came in and cleaned for me.

However, once she was gone, I had to look at my income. Because, unfortunately, when I returned from the hospital in '95, I was greeted by a letter from my company that took an attorney to decipher, but bottom line fired me for being unable to do my job. Well that was a devastating experience because I had been a star salesman for them. I expected that my boss would've called me, but he didn't, and it's over now. I wish they had. I thought the gentlemanly thing would've been to speak to me.

Making a new start and touching other lives

I found a mobile home near where I lived in California. Sold my town home and moved in to a very pleasant little place. During that time, one of my accounts gave me a $2,500 check. He also gave me a computer that was a great leg up over the little laptop I owned. I used that to put together all the data I had on chordoma and see if I could develop some type of a website that would help other people with bone cancer. Initially, it was gonna be on chordoma, but then I found out that primary bone cancers are rare.

My efforts initially produced the Bone Cancer Tumor Network Association. I sent notices out to my friends and family and was able to raise some funds. Through the help of a widow of a man who was in my Wellness Community group, I was able to form a non-profit corporation. We decided to call it Bone Cancer International, Incorporated. Since its establishment in 1999, we've been able to help--We have a scientific committee on the website, and a bulletin board, and we've been able to help about 50 patients, 40 of whom have chordoma. It ranges from the base of the skull to the tailbone. The majority are base of skull, then lumbar, then sacral and a few in the thorax.

So out of all of this has come an opportunity to use my marketing skills and my ability to put things together. We've helped people and it can be ongoing, assuming that I'll find someone who wants to take over the helm before I pass on.

For patients who are newly diagnosed, I would look for a second opinion. I would bone up as much as I could on the information given to me. I would try to reach other patients with similar diagnosis as quickly as possible, and get as much background as I could on what's being told to me. Especially with a rare cancer, where it will be difficult to find a doctor who is familiar with the condition. I would seek out an expert if I could do it, as quickly as possible. Listen to what they have to say. As scary as it all is, I would try to handle my emotions as quickly as possible and try to stay clear headed. I was forced into it because I'm alone. I really admire families who can support people who are in great need and have cancer, or anything else going on, but particularly cancer. That would be in early diagnosis. I would also say that, for instance, the doctor was candid with me and told me that I could have been paraplegic, could have been incontinent. There is no paraplegia. I do have incontinence, but it's handled. I don't have to wear a bag. However, even if I did, the techniques now are so sophisticated that one shouldn't choose not to live because one would be a little inconvenienced. And life is a precious gift. I would say try to protect that at all costs and to accept the gift that this is. To look at one's life, see what needs to be straightened out, and go about straightening it out. Be grateful for what you have.

When I first learned about this, it all came as such a surprise. All it was was a little back ache, and a little pain in my leg, and then a major condition. As I waited at home, I do think I must have been on hold, because there was no emotional reaction to it. Even to this day, I've only cried a little bit, and there's no big emotional release that many people are capable of. I haven't had that. But my initial reaction was, "I wonder what this is all about, and I wonder what I can do about that." And I guess that's the tact that I took. And subliminally, knowing in myself that that would be the way that I would handle it. I can't say I choose it; it was just what came out.

My concerns to day, are what will happen if it recurs? However, I don't go there because it's an unknown and I find it useless to spend my time speculating about that. I am grateful that when I look at it all, the gift it's given me is to see that everything I ever did in my life has made me capable of doing what I'm doing now. I'm able to work from my home, to help people with chordoma and bone cancer. I have a volunteer group that helps with the website. The doctors are volunteers. My colleagues on the board are all volunteers. Nobody gets paid. We're doing something good for other people who are grateful for the help because they're also frightened, as I was, but my fright was different. I was able to use my marketing skills to research the problem and find the solution. I'm grateful for that, it's served me well. Even getting fired, that was very upsetting because I thought they were my friends. I found out that they were business people, and I had to acknowledge that they had to get on with their business. I wish we could have continued as friends, but life is like that. I have more to be grateful for than to be sad about.

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