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Nancy Bengston
08.28.01

Grand Haven, Michigan; bridgenut@triton.net 

1936 / Class of 1998 / Lambda Light Chain / Chemo & PBSCT / Last Update: 8/01

I lived my childhood just outside a very small town east of Lansing, Michigan. My father operated a coal yard-grain elevator. He also sold water softeners and fertilizer. I played on the railway right-of-way and on grandparents farms. I have three brothers – two older and one several years younger – and no sisters. I had the normal childhood diseases, on successive Christmases from the age of three. When five I acquired Scarlet Fever (before antibiotics) and spent a month in the hospital (pest house, it was called.) I smoked from the age of 15 to about 54.

I married young and out of six pregnancies have three surviving children. I had menstrual problems from the onstart of menstruation and at the age of twenty-five had massive ovarian tumors removed. A complete hysterectomy was done at the age of thirty-five. I did use Premerin for about two years, stopping when a friend was diagnosed with breast cancer. (She died after a 12 year fight.) I used large doses of Vitamin E (800-1600 mg) to help with the hot flashes. I have had a lot of back and leg pain due to arthritis. Sinus and allergy problems also plagued me.

I have been married five times; four ending in divorce, the other in death. Three of the marriages were to drunks and heavy drinkers. My last husband had been cancer free from Hodgkin’s Disease for twenty-five years before he acquired lung cancer, metastasized to the brain and died seven months after we found it. My daughter was in a near fatal auto accident at the age of 21 and now lives as a paraplegic with brain damage in a special home. I tell you this not to gain your sympathy but to make you aware of the stress I have lived with, whether from my choices or from fate.

I believe in vitamin and herb therapies to help the body help itself and I try to take as little prescription medications as possible. I used to take the same vitamins all of the time, but now I try to listen to my body and take different things according to what I sense what it needs.

When my last husband died, I went into deep depression. I was angry that we had only had three years together. I frantically tore the house apart – carpets, floors etc. It was a 90’ summer. When I got the house back together I sold it and moved to a condo. I used to laugh and say I lived on the wrong side of the tracks; now I live out behind the barn.

I was tired and just couldn’t seem to catch up. I went on a cruise and came back tired. I had a blood screening in ’94 and showed up with low hemoglobin and high nuclears . I thought it was strange since I hadn’t had any problem with anemia since the hysterectomy but I didn’t check into it any further. I thought the high nuclears were just the arthritis raising its ugly head. I kept getting more tired. My daughter was in a home about two hundred miles away and I would have to stop and take naps for up to an hour just to make the trip one way. I believe it was about this time that I started drinking a lot of water. (I had quit drinking water when they took the Scotch out in 1983!)

I complained to my doctor of bone and muscular pain and she thought it was chronic fatigue. I treated that with nutrients, vitamins and herbs. I did feel better for a while. She also suggested antidepressants.

In December of ’95 I had a bad cough that hung on and constant heartburn. The doctor gave me cough syrup with codeine in it. My son took me to a Christmas party at my daughter’s home. He remembers that I was drinking water constantly and wanted to go straight home because I had one dose of cough syrup to get to sleep on. I had been off from work off and on for two weeks and wanted to be able to go to work on Monday.

Monday I go to work but when I got there I felt a bit woozy. I asked one of the other gals to get the coffee, as I didn’t feel too steady on my feet. I kept feeling worse – like the world was getting further and farther away. I worked in a bank and one of my jobs in the morning was to sell and buy cash for large customers. I started to make the sales/buys when I began to be unable to focus. Computers had just came into our office. Luckily I realized that I could make a wrong keystroke and mess up the whole bank. I asked another girl to recheck my work and finish up what I had started. I also asked her to take me home. I knew I couldn’t drive.

By the time she was able to take me home, the office had decided I should go to the hospital. They wanted to call an ambulance but I didn’t. They took me to my van in a steno chair. By the time we got to the hospital I was hallucinating and very weak. I remember an EMT undressing me and thinking I should be embarrassed, but I wasn’t. I was neither hot nor cold and had no feelings about anything. At one point I thought, "This could be my last day one earth." But it didn’t upset me. I didn’t even have the desire to call anyone. They immediately started an IV. By the time it was half gone I started feeling cold. Although I was tired, life was coming back. They called my doctor and she thought I had an overdose of cough syrup. They gave me a couple of shots that were supposed to counteract the overdose. Nothing happened. By the time two IV’s were poured into me, though, I was feeling ok but tired. My brother came and took me home. They thought I was a mental case. I do not believe it was an overdose but was dehydration from kidney failure. More on this later.

A week after this episode I went back to work but that was all I was able to do. I slept whenever I didn’t have something away from home to do. Soon I was dreading going to work. This was unusual, as I really liked what I did and worked with wonderful people – except for my boss. He was nice enough but very erratic. One never knew from minute to minute what mood he might be in.

I was lucky enough to have insurance thru my husband’s work and did not have to work. I decided to retire in June ‘96, about six months away. My blood pressure was going out of up and I blamed it on my erratic boss. In May ’96, I agreed to go on medication because the pressure was up to 160/100. My doctor also put me on Prozac because she thought I was depressed more than really tired. I quit both after I retired because I thought I didn’t need it.

January of ’97 I went to Kenya. I made the trip ok but it took me weeks to recover. It was the big joke on the trip that I drank so much water. They didn’t know that I also bought water on the side. In June I went did a cruise on the Rhine again returning tired.

January of ’98 I went on an Elderhostel trip to Costa Rica. On the way back, I stopped to stay with a friend in Florida. It was very rainy and I was warm – she was cold. I decided to come home where I had control of the thermostat.

My doctor had always warned me to call her if I felt at all sick when returning from a trip as I could have something serious. I came home on Tuesday and called her on Thursday. I was vomiting and had diarrhea. It was decided I had a flu bug. On Monday I called her and said that I was feeling better. That must have lasted four hours. I went back in on Thursday. I felt awful!!!. My blood pressure was out of sight. My head pounded and I was ever so sick.

I had put money down to buy a new and larger condo. I was so sick I knew I couldn’t make and decisions on building and decorating nor could I manage selling the one I had. I canceled it and took down the For Sale sign.

Tests…test…tests. I don’t remember medications I may have been given or how many times I went back and forth to the doctor’s office and hospital. They tried to run some sort of scan but I couldn’t get fluids or the dye down. I was in kidney and liver failure. I forced water down. Finally the 24-hour urine test. Bence-Jones proteins showed. My doctor was shocked. She was expecting some type of hepatitis. She gave me the diagnosis of Multiple Myeloma Lambda Light Chain on March 23, 1998 and a choice of local oncologists. I chose one who had been a hematologist previous to going in to oncology. I was sixty-one and a half years old.

A bone marrow scan showed about a 20% involvement; a bone scan showed no lesions and good bone density. They thought the disease had been caught early and would be easy to control. The first chemo was Melphalan and Prednisone, given by pills four days a month. I was supposed to have treatment every four weeks. My white count recovered five weeks after the first treatment and I was able to have the second. My white count did not return to the proper level in seven weeks and the oncologist stopped the treatment and did another bone marrow test. I was up to 40% involvement. Because of the liver problem the oncologist estimated that I would survive two and a half to five years without treatment and two and a half to five years with treatment. Supposedly I would be more comfortable with treatment.

Next I started on VAD and was to have six treatments before they checked again. A catheter was installed to use for chemo and blood tests. It was nice. I only had to go in and have the pump set up and return in four days later to have it removed. I could flip out the end of it when they wanted blood tests. But the VAD did not agree with me. I felt like I had a one-inch layer of fat on my entire body, especially from the chest up, and it was total pain. I couldn’t sit, stand or lay. My neighbor once went to pat me on the back and I screamed at her not to touch me. I kept telling the doctors that I was allergic to corticosteroids (Prednisone and Decadron) but they kept saying that no one was. I lost my hair after the second treatment and I hurt and was tired all of the time, and felt half sick. As had happened with the M/P my treatments did not happen on schedule because my white count didn’t recover properly.

By Thanksgiving I had a little bit of hair and had a five-generation picture taken with my great grandson. (It looks awful but I was very happy to be able to have it taken.)

When I went in for the fifth treatment, I told one of the nurses that I was quitting after the next (sixth) treatment regardless of what they suggested because I was tired of being sick and tired. They must have told the doctor because he immediately scheduled another bone marrow biopsy. I was now about nine months past discovery of the Multiple Myeloma and sixty-two-plus years old.

During this time I did a lot of funny things. I figured that if I died my sons would use the money to get new computers – so I went out and bought the best so I could break it in. I bought a new sewing machine – so I would have something to do when I couldn’t get around so well. I bought new furniture – a vibrating bed that goes up and down; a sleeper sofa. Ordered my "last car." I guess I was trying to buy life. Sometimes I felt so bad that I couldn’t sit up to the computer so I pulled my bed up to it so I could rest between the installation of programs. I used to sit up in bed and vibrate to keep the nausea at bay.

The bone marrow biopsy now showed an 80% involvement and the oncologist didn’t feel he had anything more to offer me. First he said I was stage IVb but backed off to stage IIIb. Surprisingly, I didn’t care. Death was not scary to me. I only dreaded the path to it. I was grateful not to have to go thru any more chemo.

The oncologist asked if I would consider a bone marrow transplant if his friend/associate would consider me as a patient. I agreed to it if I could wait until after Christmas.

On January 19, 1999, my brother took me to Detroit’s Karmanos Cancer Center. It was only about 200 miles from home and most of the rest my family lived about half way, in the Lansing area.

His friend/associate turned out to be Director of the Bone Marrow Transplant department and a professor of Medicine at Wayne State University. He agreed to take me as a patient and I agreed to a Peripheral Stem Cell Transplant. I don’t know what his reasons were. Mine were that I didn’t think I would live thru it and it would be much faster than waiting for the Myeloma to do me in. Basically the transplant would be done as an out-patient, entering the hospital only for the actual insertion of the cells and for a few day after. The rest of the time I would have a room on the hospital grounds and an apartment after the transplant.

I passed all of the tests assessing my physical and mental strength and the transplant was set up for March 19, 1999.

First I had to have the catheter removed and a larger one inserted. I went in for the first round of chemo, previous to aphaeresis, the next day. I found they were going to give me Prednisone as part of the treatment. I cried because I was sure I was allergic to it. Even my brother did not believe me. He thought I was just weak and upset. Approximately an hour after they started it my whole head swelled up and I felt like I had pepper in EVERY opening. My brother said I looked like I had gained 30 pounds and wouldn’t have recognized me. I nearly went crazy – and so did every one around me. I got the attention of every department, including pharmacy. No one had ever seen anything like it. They poured the Benadryl in. Needless to say I slept well that night.

I’m a little foggy about what happened next. I know I gave myself Nuperin shots (and I hated it) for some time after that. Maybe it was a week later that I had to go in every day to see if my blood was up enough for aphaeresis. I was slow in getting the proper levels and became scared that I wouldn’t produce stems for transplant.

One Monday when I went in to test I was feeling awful. By the time they had found that I didn’t pass again but did need packed cells, I was sick. They put me in the hospital as a patient and treated me but I can’t say with what or how. I was very sick with a blood infection. The doctor said maybe they would have to remove the catheter that they had put in for the transplant. I said "NO!!!" I would beat it. I did, and about a week and a half later they were able to get the stem cells over a five day period.

During that time I was in the hospital I missed the appointment that had been made for complete body radiation. I asked to have as little radiation as possible. The doctor agreed to no radiation since I did not have bone lesions. I tried to talk him out of using Melphalan since it had really affected my blood making abilities. He said "good. That’s what we want." I was sure I wouldn’t survive.

Now I had to stay away from babies and sick people. My immunity was almost gone.

The transplant was rescheduled for March 31st. I went home to recuperate for a couple of weeks. I got out of Friday and had to go back the next Tuesday (for chemo, I think.) It was about four hours each way.

During the night of March 17th, my father died. I broke protocol and went to his memorial service but did try to stay away from people as much as possible.

I went back to my room on Monday. I went to the clinic every day and probably had chemo but I don’t remember. I entered the hospital on Wednesday and they started the insertion of cells early in the afternoon. Everything was fine until they were almost finished with the first half. Then I started dry heaving from my toes and continued for days afterward. (They told me that it is the DMSO that is used to preserve the cells that may make one ill.)

After the transplant I mentioned the word ‘suicide.’ Not that I meant to do it. I said I would do it if I were home and felt so bad. I was just telling them how I felt. I wasn’t home and had no intention of going there. I needed their morphine drip. Because of that statement, I got a 24-hour watch for three or four days. The down side of that was that the nurses thought the "watch" ought to be taking care of me and the "watch" said that wasn’t their job. I believe better care would have prevented some of the pain. A lot of funny things happened at this time. I hallucinated and was meaner than a ‘junk yard dog’ according to my brother. I was more miserable than I had ever been in my life. My mouth was raw. I couldn’t form words that anyone could understand. I lost the lining of my total digestive system from top to bottom; I dry heaved and had diarrhea. Again my hair was gone. And they (hospital personnel) expected me to walk around their circle ten times a day!!!

One day when my son was walking me around the circle I noticed a little brown spot on the floor. I laughingly said, "I must have been here before!" My son told me that everyone else there had the same problem.

When they released me to the apartment I didn’t know if I was glad or not. I was scared to be away from the hospital. Afraid something would go wrong. I had never been so weak in my life. I was sure I could never recover to anywhere near my former self. After all, I was 62 years old. My mother was in better shape at 88.

While I stayed at the apartment I had to return to the hospital every day. I think they kept watch of my electrolytes, blood and fluids. I know I got fluids but don’t remember what else. Seems like I got blood once or twice and potassium but I’m really not sure.

A friend came to take care of me when I came home. She was wonderful. Prepared good meals and was very upbeat in her conversation. I was upset that she was five years older than I was and in much better condition. I could barely get from the bed to the bathroom and/or davenport less than 20 feet from my bed.

I knew I had to keep moving if there was to be any hope. When I started walking I could get only one car length beyond the garage. It took me longer to get dressed to go out than it took me to walk. Then I was able to walk passed the neighbor’s. (This is a short distance because I live in a condo.) By the end of the five weeks my helper was with me I could walk all around the condos (probably a quarter of a mile.) Before she left I tried driving and found I could do that too although I didn’t care to go very far.

By May, it appeared that I was in remission although they couldn’t say for sure because I had so many immature cells. By July '99, tests showed I was right on the line. I decided to call it REMISSION!!! Although I still tired faster than I wished, I was feeling great.

My only setback came in July '99, when I acquired a bad case of Shingles that took over half my chest and back. Before it broke out I thought it was muscle pain. Then I thought it was bone pain. I wasn’t sure if I was crazy. I kept myself knocked out for the best part of three weeks. Even breathing was a pain. I had to ask a friend to get me some food because I couldn’t stay upright. It was worse than being on chemo.

All of that seems like a long time ago. I was very fortunate in my recovery. Once my blood counts started going up, they never wavered. Although I have never quite gotten to a normal hemoglobin and red blood count I kept inching up.

Dr Baynes, at Karmanos Cancer Center, wanted me to go on Interferon and Aredia after the transplant. I totally refused. I was sick of being sick and tired. After studying both, mostly on the Internet, I did decide to go on the Aredia. I now receive 90mg every four weeks. It has lessened the pain a great deal and the only side effect I have noticed is that my electrolytes get out of balance and I have more muscle cramps. My cure is to increase my calcium and potassium intake. As I feel necessary I take herbs and vitamins. I try to eat a lot of fresh vegetables and fruit. Dr Baynes does not agree with the vitamins but knows that I will do it my way.

In July 2000 I cruised the Baltic for two weeks, doing day walking trips every day, missing only one. In September, I toured Germany, Austria, Switzerland and Italy. The main part of the trip for me was the Passion Play in Germany but I enjoyed all of it. Again, I only had to miss one day. I did return home each time totally exhausted and with allergy plugged ears. It took me about three weeks to recover each time.

I still tire faster than my friends do. I still have a touchy stomach – getting nauseated if I get too tired or eat too much. I hiccup more that I ever did before.

I will always have to drink lots of water to keep my kidneys clear. I like food and it shows.

Cancer has been quite an experience. Unlike many, I did not feel angry. I was grateful that it had not occurred previously when I was raising children and before I had my daughter settled. I did get angry with my husband that he was not there to take care of me but I think being alone is one of the reasons for my success. I had to keep going to take care of myself.

I have had the support of the MANY friends and family members who prayed for me and asked their friends to pray for me. One friend sent me jokes e-mail every day. I love to play bridge and my friends put up with me even when I couldn’t think things thru. Once I bid hearts that turned out to be spades. These people are the real heroes of my survival. They kept me going.

I have tried not to mention actual counts and numbers because I believe each body is different and what may be pertinent to me may not be the same for another. Also we each react differently to medications, vitamins, herbs etc. We are not clones.

What would I say to a new diagnosed person? First, listen to what you are told. It is best to take someone with you as it is difficult to take everything in. Ask lots of questions and make notes to ask more. Study, study, study the disease and the medications suggested for you and make your own decision on what will be used. Don’t let the condition control you. YOU control it!!!

Secondly, I would suggest one keep as active as possible. Walk, walk, walk. We have to keep our bones as strong as possible and weight training and walking is the way to do that. Push yourself to do at least a little bit each day.

Laugh as much as possible. Watch old movies and cartoons. (Norm Cousins was right!) Leave worrying and fretting to someone else. Look at your problems. What can you do about them? Do what you can NOW. Leave the rest alone. If there is nothing you can do, LET GO!!! God is very able to run things without help.

I believe in doctors and I believe in complementary medicine. Most of all I believe in myself and my ability to hear to my own body. I will try to keep up with the latest innovations medical, pharmaceutical and complementary. I will die someday but I will die knowing that I made the decisions on how my body would be treated. I do not think that death is a failure of medicine. It is the FINAL cure.

August, 2001: In February, I found out that the MM had returned with gusto. Only two choices were given: Thalidomide and/or an allogeneic transplant. Presently, I am on Thalidomide and trying to get the transplant thru Medicare. I am also still on Aredia.


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