My Summer with Hodgkin's
The Discovery – March 24, 2004
During my yearly routine mammogram,
Dr Barbara Threat, M.D. found a lump just above my right clavicle (supraclavicular).
She sent me to my primary doctor,
Dr. Roger Chen, M.D. to get his opinion. Dr. Chen sent me to a general
surgeon.
The Diagnosis – April 8, 2004
During my first visit with the general surgeon,
Dr. George Schaub, M.D. was concerned and scheduled a biopsy the next day.
After seeing the lymph node, Dr. Schaub knew right away that it was cancer but
he did not what kind. He personally took the biopsy to the lab just to make
sure his “favorite” lab tech got the job. He sent me to get a chest x-ray and
blood tests. After two long days of waiting, the results came back Nodular
Sclerosing Hodgkin’s Lymphoma.
The Testing for
Staging
– April 13, 2004
Dr Schaub sent me to
Dr. John Krauss, M.D. at the
Ann Arbor Hematology Oncology Associates at
St. Joseph Mercy Hospital. Dr. Krauss was very encouraging giving me a 90 –
95% chance to be cured. Tests were to be scheduled to see how much, if any, the
cancer had spread (staging). At first I was put in Stage IA, which is Hodgkin’s
in one location without any side effects. I had to have a Pulmonary Function
test (breathing), Heart echo (ultra sound), bone marrow biopsy and CT scan.
Everything came back clear except a few lymph nodes in the chest were a little
on the large side so a P.E.T scan was
scheduled. After the results came back, I was changed to
Stage
II A. That just means there are more than one set of lymph nodes affected by
Hodgkin’s.
Dr. Krauss set up a schedule of chemotherapy and sent me to
see
Dr. S.A. Jafar, M.D. at the Radiation Oncology Department at St. Joe. I met
with Dr. Jafar and after another encouraging talk, I said good bye until after
my chemo treatments were finished.
My sister, Claudia, arrived from Hopkinton, MA the day
before my first appointment with my oncologist. She spent a lot of time with me
over the summer going to doctor appointments, tests and chemo treatments. She
was a great help to me and my husband, Joe. She cooked soup and froze it in
single serving container so we could have something healthy to eat even when I
did not feel like eating.
Preparing for Treatments – April 28, 2004
Dr. Krauss decided that I would benefit from a port in my
arm where the chemotherapy would be administered. It is a small plastic and
metal “port” that is installed right under the skin and a long tube is fed into
a vein where it stops inside a larger vein inside the chest. This way the chemo
is dumped into a larger amount of blood so the chemo would not damage the
smaller veins. The port was placed in my upper left arm and I am really glad I
had one. Once the incision healed, there was nothing to worry about.
They also set up a Chemotherapy class for me, my husband
and friend so we could know what to expect during the treatments. The
informational video and the explaining from the nurse was very helpful and
really helped to ease the anxiety about the first chemo treatment and the side
affects.
The Chemotherapy Treatments – May 11, 2004
I
had 8 chemo treatments of what is called
ADVB. That stands
for Adriamycin, Dacarbazine, Velban, and Bleomycin. Those are the four
chemotherapy drugs that are used to treat Hodgkin’s most of the time. The
treatments were every two weeks for 4 months. After the first treatment, my
white blood count really dropped so 24 hours after every chemo treatment; I went
back to the clinic for a
Neulasta shot. That helped me keep my white blood count up so I did not
have to miss any treatments. I almost had to put my last treatment off for a
week because the Neulasta
was working so well, that I did not need a shot after my 7th
treatment but by the time I got to my last appointment, my white blood count was
lower than they like it to be before a chemo treatment. So I had to wait in the
waiting room, as Dr. Krauss decided whether or not to let me have the treatment.
I just wanted to get it over with.
I felt a little worse after each treatment and by the 8th
treatment, I was feeling really tired. I lost about 75% of my hair. My chemo
treatments were on a Tuesday or Wednesday and I took the rest of the week off
work. I worked every other week during chemo treatments. The anti-nausea
medicines work pretty well but I still felt “icky” most of the time. I was so
tired but it was hard to sleep as this was a side effect from one of the drugs
they put me on.
On August 17, 2004 I had my last chemo treatment. What a
day to rejoice. I had a chest x-ray and CT scan a week later and everything
came back clear. After the 2nd chemo treatment, the lymph node in my
neck was back down to normal size so I knew then that the treatments were
working.
The Radiation Treatments – August 27, 2004
Just a little over a week after my last chemo treatment, I
went to see my radiation oncologist, Dr. Jafar. At the first appointment, they
made a mold of my upper body and gave me my 3 tattoos that would be used to line
me up to the radiation machine for my treatments. My first of seventeen daily
radiation treatments was on September 8, 2004. The treatments lasted about 30
seconds on the front and about 7 seconds on the back. I was in and out in less
than 20 minutes every day. They radiated my right clavicle area and down into
the top center part of my chest in the front and back. I got what looked like a
sunburn in the radiated areas by the time the seventeen treatments were
finished. Radiation treatments make you a little tired but since I was still
pretty tired all the time from chemo, I did not notice much difference.
September 29, 2004 - ALL TREATMENTS FINISHED!!!!!!
I see Dr. Krauss every 3 months and every 6 months, I will
have a chest x-ray and CT scan. I am in remission now as they will not say I am
cured until I reach the 5 year mark.
Rest and Relaxation – July 30, 2004
Claudia drove in from Massachusetts to drive me to Kansas
City, Missouri, where most of our family lives. No one had seen me in over a
year and I thought it was a good idea to show my parents that I was not dieing.
It was a week after chemo #6 so I was tired but Claudia did all the driving and
we just took it easy visiting family.
A well deserved vacation – August 28, 2004
Joe
and I had not have a vacation in quite a while and the stress was just as bad
for Joe than for me. My mom flew in to take care of our “kids” and a little
over a week after my last chemo treatment, Joe and I drove to Branson, Missouri
and then to Kansas City for a week. Joe met some friends he had not seen for
over 20 years. We had a great time. I was really tired but Joe did all the
driving and I slept in the car and took naps during the day. This was the first
week long vacation we had ever taken in our 15 years of marriage.
Finding the "something" that was missing
As anyone that has been told they have caner knows how much
it makes one think about life. Life is just not the same after hearing
those words. Your priorities change. You start to take life easier and
enjoy the little things more. My new motto is "It just makes no never mind".
Right after I was diagnosed, a friend invited me to church.
I grew up going to church but like a lot of kids, as I moved away from home, I
moved away from the church. I had thought about going back to church several
times, but it is hard to go to a new church without knowing someone, so I just
never made the effort. Now that I am going to the
Milan Vineyard, I feel like I found
the "something" that was missing in my life. My entire family, their friends and
my friends were praying for my recovery as I was going through all those
treatments, and it made me feel like someone really cared. This is the kind of
support that helped me get through it all.
I feel that getting cancer was a wake up call for me. I am
awake and listening and willing to learning.
Alternative Medicine
I had decided to do both the conventional and alternative
medicine to get through this “experience”. With the help from Dr. James
Neuenschwander, M.D. and a great acupuncturist,
Rosanne Emanuele, I
think I got through the entire ordeal coming out a lot healthier and stronger
than without the alternative medicine. I continue to take a lot of vitamins,
supplements and homeopathy remedies to help my immune system to build back up
and to help cleanse the system from the effects of the chemo and radiation
treatments. I am also taking Cantron
which is a unique nutritional formulation containing vitamins, minerals and a
proprietary blend of organic compounds. Cantron is known to dramatically aid the
body’s own natural defenses and helps it to reverse even the most severe health
conditions.
Helping Others
Two
of my sisters (Jennifer in Kansas City and Claudia) and I have decided to help
others that are diagnosed with Leukemia and Lymphoma. We are walking a ½
marathon (13.1 miles) April 30, 2005 in Nashville, Tennessee, in the
Country Music Marathon. We are walking
in the Team In Training
organization run by The
Leukemia and Lymphoma Society. We each have to raise over $3000 to be able
to participate. I have reached my goal and I am now helping my sisters reach
theirs. They are both going to have a Spaghetti Fund Raising dinner and I hope
be able to go to both to help out. We are selling candy bars and silicone
bracelets also. I plan on taking a bus load of friends to
Greektown Casino to help raise
some money. Everyone at work is great. They are all supporting me and buying a
lot of high priced candy bars and the silicone bracelets for their kids. I may
try to sell either candy roses or real roses for Valentines Day.
Training has been really hard. I was starting to feel
better so I joined Curves for
Women to help me get my entire body back into shape. Chemo takes a lot out
you and I never realized how much until I tried to get back into shape. I have
been trying to walk on our tread mill and walk the pups in the fields behind my
house. I have to watch myself so I do not over do it and get worn out like I
have in the past. I have 3 more months to train so I am going to take it easy.
I did not think walking 13.1 miles would be difficult but there is a 4 hour
limit so we will have to walk at a good pace. We can do it and we will have a
great time doing it together. The Team in Training group is great. Wish us
luck!
I will get a CT scan every 6 months and a checkup every 3
months until 2 years out.
UPDATE: June 2006
I just got the ALL CLEAR after a CT scan. I now get to go
to checkups every 6 months with a CT scan every year until 5(?) years out. I am
feeling great and back to my normal life.
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created by WJN - last edited 9/10/06
