Richmond, Virginia; firstname.lastname@example.org
1961 / Class of '01 / Type: IgG Kappa / VAD, HD Chemo, SCT, Remission / Last
I'm submitting my story because when I was going through the throes of
learning that I had this disease, the stories of other survivors along with my
faith is what got me through. I hope I can be of help to someone who reads my
story and let them know that there is a light at the end of the tunnel.
I was diagnosed in May 2001 with Multiple Myeloma. I kept having a swelling
sensation in the left side of my neck and ear area, I had nose bleeds and I was
always tired. I knew something was wrong but I didn't think it was serious. I
thought perhaps I had an infection in my throat or ear. My primary care
physician did an exam and could not find anything remarkable. He did a couple of
blood tests and called me one evening @10:00 p.m. Right away, I knew something
was wrong. He confirmed it by saying that he wanted me to see a
hematologist/oncologist ASAP. The next day, the oncologist advised me that the
blood tests pointed to multiple Myeloma and he wanted to do a bone marrow biopsy
(the first of many to come) to be certain. Ultimately, the doctor confirmed that
I had early stage multiple Myeloma with a quantitative IGG of 4120, 17% plasma
cells in my marrow and no bone lesions. He commented that I was the youngest
patient he ever treated with this type of cancer. I was devastated! I could not
believe that I had cancer. I went from thinking I had an ear infection to being
told I have cancer. Whoa! I cried, I cried, and I cried. All I kept thinking of
was the things I haven't done yet. I kept saying to God "but I have so much I
still want to do... I don't want to die now".
Within weeks, the doctors were talking about prepping me for a stem cell
transplant at the Medical College of Virginia. I read as much as I could about
it, got literature from the International Myeloma Foundation, asked as many
questions as I could, spoke to people who have gone through transplants, joined
a support group and just continued to learn as much about multiple Myeloma and
stem cell transplants as possible. I went to the University of Virginia Health
Sciences Hospital in Charlottesville, Virginia for a second opinion with a Dr
who had experience with treating Myeloma patients. He confirmed the opinion of
the other doctors that I should have the stem cell transplant and that I should
be looking towards getting my disease into remission.
I had 4 rounds of VAD (Vincristine, adriamycin and Decadron), infusions as an
inpatient. The first time, they put in a port-a-catheter on the left side of my
chest to administer the chemo but within days, my face, neck and arm started
swelling up and became very painful. They determined, through CAT scan testing,
that I had developed deep venous thrombosis in my left subclavian. I had to be
hospitalized again and placed on a heparin drip for 5-7 days. After recovering
from that, I had to go back in for chemo. This time, they put a temporary
catheter in my right arm and administered chemo. I went home and wound up back
in the hospital with blood clots in my right arm. Another 5 days of heparin in
the hospital. I was placed on Coumadin and sent home. Back for more chemo. This
time, they put the catheter in my right jugular vein (neck) and administered
chemo. Finally, no more clotting. I got through 4 rounds of VAD and 1 round of
DCEP. By October 2001, my IGG was down to 1756 and my B2M was 1.0. I was ready
for the stem cell transplant.
In December 2001, the SCT was done at the Medical College of Virginia and was
coordinated by Dr. James McCarty, Director of the Bone Marrow Transplant Unit at
MCV and his colleague, Dr. Chung. Although the SCT was not a pleasant
experience, it was not as bad as I had anticipated. I stayed in the hospital for
about 21 days. The first few days, they collected my stem cells (by the way,
they had to put the catheter in my leg this time), then they administered the
high dose chemo (Melphalan and Cytoxan), then gave me back my stem cells. I was
totally wiped out. It took all I could do just to move. I lost 20 lbs. Just the
smell and sight of food made me want to vomit. I prayed to God. There were
nights when I was afraid to go to sleep because I did not think I would wake up.
But I kept praying and praying and I started to get better and better gradually.
My family (mother and sister and cousins) and friends cam! e to see and was of
great inspiration to me. I don't know what I would have done if I did not have
my mother and my sister there for me.
Within months, I was somewhat back to feeling like myself. I returned to my
full-time employment in February 2002 (after being out for 9 months). It was
wonderful to be able to work again. I know that may sound crazy to some people
but I enjoy my work and you don't miss what you have until you don't have it any
Fast forward to October 2002; my Dr. says I am doing great. My cancer is at
stage "zero". The most recent biopsy was normal and my protein levels are normal
and they officially classified me as being in remission! Thank God. It has been
a rough road but I'm still here and I feel good. To anyone who is going through
this, please keep your faith. It's going to be o.k. I'm living proof that our
prayers can be answered. There are so many new treatments being tested in
clinical trials for Myeloma. I have faith that one day this disease will be
curable or at least manageable like diabetes or high blood pressure. My advice
to anyone going through this is to read and become knowledgeable about Myeloma
and what's going on with your body. Pray and try to be positive. I know it's
hard. I have been there. But if I can get through it, with faith sometimes the
size of a mustard seed, you can too. ! If there is anyone out there who is going
through what I have gone through and need a word of encouragement or if you have
a question, I'd be glad to help.
By the way, cancer has been a wake up call for me. Since my diagnosis, I have
been up in a hot air balloon over central Virginia; I've been to Niagara Falls
on a boat (Maid of the Mist); traveled to the Grand Canyon; I'm becoming a
foster parent and plan to spend time next summer on my own boat on the James
River; somewhere in there I want to go back to school and get my Masters Degree.
There are so many things I want to do and having this "condition" has made me
aware that life is precious and you have to have fun and make the best of it and
do all of the things you want to do.
I hope that I can be able to update this story from time to time with
positive news. God bless.