Restoring Hope: A Cancer Patient Shares Her Story
Connie Prochnow vividly relates her experience of being diagnosed with acute myelogenous leukemia after having completed breast cancer treatment.
Connie with her husband, Tom
I love autumn. There is a certain type of excitement each new school year brings.
Serving Northside Elementary School in Middleton as a Speech and Language Pathologist, I had just started the '06-'07 school year. My son Chase was a senior at Middleton High School, my daughter Chelsea, a junior at UW-Madison, and my husband Tom's business was stable.
During the first part of September, I had my annual mammogram and visit with my breast cancer specialist, James Stewart, MD. I was given an "all is clear" report. Two years free of breast cancer. I had much to be thankful for. Life was good.
My Brain Wasn't Thinking Cancer
On October 6, I remember trying to sneak in a nap and loading up on Advil before my son Chase's football game. Maybe I was fighting a weird virus I must have contracted at school. Or maybe not.
The bruises that had been appearing on my body were in greater number now. Could I have walked into something that many times without noticing?
Two days later the petechia on my legs and trunk, combined with the shortness of breath and the shear exhaustion, sent me to the emergency room.
I had been searching the internet the previous 48 hours, wondering if I could self diagnose my symptoms. Was it Lupus? Do I have some weird auto immune disease?
While I thought I would see cancer again in my life, I didn't think it would happen this quickly. How could I possibly have cancer already? It had only been two years and only a few weeks before that I got the perfect report from Dr. Stewart. My breast cancer treatment was at stage zero when I was diagnosed in July of '04. My treatment consisted of a lumpectomy and six weeks of radiation. I never even considered I could have another type of cancer that was totally unrelated to my breast cancer. My brain was just not thinking CANCER.
There was No Waiting
On Sunday evening, the doctor in the emergency room at UW Hospital was very kind and nurturing. He told Tom and me that I would need to be admitted immediately. I tried to tell him that just wouldn't work and asked to have a pass until the end of the week. I had things to do! How could I just enter the hospital without leaving lessons plans for my students or talking to my children?
There was no waiting…I had already pushed the envelope as my white count was at 150,000. I needed help and I needed it pronto.
Looking for hope, I asked if there was any chance I could have a rare blood infection and not cancer. In his gentle way the doctor replied, "Maybe a 6% chance." That was all I needed. We could at least tell our children that I may have a blood infection and we were checking out all the options. It was hard saying goodnight to Tom but yet in some strange way, being at the hospital brought me hope. I knew I wasn't a well person and I needed to be there.
Someone to Make it All Better
The next morning, after a few more blood tests, it was confirmed. I had acute myelogenous leukemia. Eliot Williams, MD
was assigned to my case and he had a wonderful team that supported him (and me). As my husband Tom was by my side, I remember Dr. Williams' calm yet confident manner explaining to us that I was very ill. He explained the course of treatment and assured me that he didn't think the cancer would be my demise but that it was very important to stay free of infection.
After he gave us the diagnosis we never asked what the chances of survival were or the prognosis was. I guess we never even thought to ask. We were going to do what ever it took. I had faced cancer before and even though this type of cancer was more invasive and life threatening, I had less fear. I needed to let go and let God take care of the details as I knew I would be facing some challenges ahead of me and I couldn't do it alone.
My greatest concern at this point was not about me but about our children. How would I tell them? I didn't want my illness to impact their lives. I wanted things to be the same for them and for Chelsea and Chase not to spend time worrying about their Mom. I wanted Chase to play his last games as center of the football time relishing the Friday Night Lights and not wondering if his Mom would make it to Thanksgiving that year. I wanted Chelsea to enjoy her first apartment life on campus and to be able to concentrate on her academics. I wanted Tom to take me home. I wanted someone to make it all better.
The Road Ahead for the Entire Family
Through prayer and much devotion, I began to realize it was no longer what "I wanted." It was about the road ahead and how we, as a family were planning to travel on it. That evening when Chelsea and Chase came to see me at the hospital I had such peace. They had already talked between them and they had pretty much figured out I had some type of cancer. They were not afraid. They knew we had faced cancer before and knew we could face it again. Together, as a family, knowing our extended family and friends would be there to support us, and keeping our faith strong, we had begun the road to recovery. BELIEVE became my theme.
Did I mention that my nurse's name was Hikmet, which means wisdom and that my nurse's assistant's name was Faith? I figured if I had Faith and Wisdom on my side, along with the "A" team of specialists, the Lord definitely had His hand in this. I could never say that staying at the hospital for almost a month, experiencing MRSA (the infection I didn't want to get), finding a growth on one of my ovaries, and all the side effects of chemotherapy brought me enjoyment. However, I did find joy everyday.
I used the Care Pages, an internet communication system that allows family to communicate how their loved ones are faring during their hospital stay, as my therapy tool. I would escape from the four walls I would be calling "home" for the next 29 days, by writing in the Care Pages.
I would talk about my fears, the ups and the downs of not knowing what the future holds or I would pray and share whatever I was feeling. I spent time reminiscing days of my youth. I would get responses from people who I had not heard of in thirty years telling me the name of the grocer who sold me the "blue sputnik gum ball" in the small southern Wisconsin town I grew up in. When I stopped my Care Pages in June of '07, I felt like Ann Landers saying good bye to loyal readers. I missed it terribly.
Believing I Was Never Alone
The good news was I responded well to the chemotherapy and now Dr. Williams was talking to me about a cure for my cancer. This cure could be found through a stem cell transplant. Stem cells are found in bone marrow. Stem cells are "parent" cells that make red cells, white cells and platelets. Stem cells are collected from one person and given to another person, usually a sibling. Wow! A cure? Once I was in complete remission, (after one or two more rounds of chemotherapy) I could wait and see if my Leukemia would return at some point in my future or I could have a cure.
Connie and her family
I have three siblings and all three were ready and willing to be tested. I can remember going to see Dr. Williams during one of my clinic visits the first month I was dismissed from the hospital. He told me he had received the results of my sibling's blood tests. He was so excited to report to me that all three of my siblings matched. This is pretty unusual as the chances are one in four to have a match. Further testing would show my brother Merritt was the closest molecular match. Once again, believing I was never in this alone proved true.
Thankful doesn't even begin to describe our Thanksgiving and our Christmas was never so magical.
New Year's Eve was a challenge.
I have always taken time to think about what was and what is yet to come at the end of each year. Tom held me in his arms and let me just cry, or shall I say more accurately, wail.
A stem cell transplant had risks. I loved my life. I wanted to grow old with Tom, see Chase graduate from high school and Chelsea from college. Yet, all signs pointed to a stem cell transplant. The decision was made and we were looking at the end of January to begin this treatment.
A Stem Cell Transplant
I went through many tests to determine if my body was strong enough to tolerate a stem cell transplant. First, we had to check out the cyst on my ovary that was discovered from a body scan done in October. My insurance company was not going to invest in a stem cell transplant if I could have had ovarian cancer as well. How could anything, like a cyst, make it through the two rounds of the chemo I had just experienced?
My body seemed ripe for growing cancer and we needed to take care of this if I was going to qualify for a stem cell transplant! The technician doing the ultrasound was extremely thorough. I had her during the first procedure in October and we shared great conversations. The doctor reviewing the ultrasound results allowed her to break the good news to me. The cyst was gone. The stem cell transplant could go on as planned. The song from the 60's rock group, "The Monkeys," kept playing through my mind. "I'm a believer, I'm a believer, oh yes I am!"
January 29, 2007, I entered UW Hospital for what could be a six-week stay. I was prepared. I brought a banner that said, "BELIEVE" and we hung it on to the drapes. I brought a small lamp for my counter and lots and lots of pictures of my children, family and friends. It was harder going back in, knowing what I was going to face or maybe it was the not knowing that was the hardest part. I was in good hands. Walter Longo, MD
was my doctor and I knew he and his team would do there utmost to make sure this procedure went as smooth as possible.
Once I was admitted back onto B6/6, a central line was placed and I started receiving high doses of chemotherapy. The purpose of the chemical treatments was to destroy any cancer cells and destroy my immune system to decrease the risk of rejecting the new stem cells.
My brother, Merritt, had been injecting himself with neupogen shots to increase the production of stem cells in his blood. They removed his stem cells intravenously and then used a special machine that allowed them to remove his stem cells and platelets. The remaining blood was then put back through an IV in Merritt's other arm. This did not require my brother to have a surgical procedure and took less than two hours. He did report that his hips and shoulders ached and it took him about two weeks to feel "normal" once again.
Celebrating her mother's 82nd birthday and hour after transplant
On February 8, my mom's 82nd birthday, I received my stem cells. The frothy tomato juice colored bag was attached to my IV pole and within 20 minutes I had received the stem cells. Later that morning my brother, sisters and mom came to have birthday cake. Dr. Longo stated so eloquently, "What a beautiful way to celebrate your Mom's birthday with your rebirth."
Merritt told me the world was now a better place because there was two of him. Being a donor is no small task. The donor often feels responsible if the patient receiving the stem cells has any complications. Merritt and I had many discussions about this. When I thank him for saving my life, he won't hear of it. All he wants is a lifetime supply of chocolate chip cookies.
Engraftment occurs when the stem cells begin to grow in your body and start making blood cells. This generally occurs two-three weeks after the transplant day. I did start feeling better at day 18 after the stem cell transplant and was released from the hospital on day 27. I had met many more patients this time: everyone with a story worth hearing. I was humbled many moments of each day. All of us were looking for the same thing. Hope.
Just the Beginning
It has been two years and three months since I have had my stem cell transplant. I got to see both Chase and Chelsea graduate. Since I worked at an elementary school, ("a cesspool of germs," according to Dr. Longo) I had to wait a year from my transplant date to return to my role as a Speech and Language Pathologist.
I did things that year that I haven't been able to do in eons. I played a supporting role in Middleton Player's Theater's production of Cabaret, (I liked the sailors). Tom and I traveled to NYC to see Chelsea who had an internship with the Today Show. Weekly drives to see my mom were a highlight of each week. I joined a morning Bible Study for Women. I volunteered at church. I went to lunch and coffee every opportunity I had. I cleaned less and played more. While I thought perhaps I could retire from my career, as I had experienced an awesome "early retirement," I was wrong. Walking back into that "cesspool" of germs on January 28, 2008 was a great day.
Making Other Lives Better
Along the way we meet people who change our lives and work hard at making lives for other people better. That is how I met Cindy Herbst, founder of Restoring Hope Transplant House, located in Middleton.
I knew Cindy's mother-in-law through church and she introduced me to Cindy. Cindy knew first hand how important it would be to offer a loving, supportive environment, close to UW Hospital, that can assist families who are recovering from transplants. She watched her family deal with a stem cell transplant and realized the value a home environment would be to a family during recovery. Dr. Longo is on the board of directors of this non-profit organization, funded through donations. He knows the affects of long term stays at the hospital and saw the usefulness of the Restoring Hope Transplant House
We all have stories to tell, heartache we have endured, obstacles we have overcome, and disappointments we have faced. Without a doubt I know I have been given another chance at life. Through my illness I have felt the faith and love that my family and friends enveloped us with. Tom, Chelsea, Chase and I have been humbled by God's grace. I wake up every morning no matter how I am feeling and say, "Thank you God, for one more day."