Grand Haven, Michigan; firstname.lastname@example.org
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
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
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
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
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
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
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
Now I had to stay away from babies and sick people. My immunity was almost
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
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
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
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.