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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
created by WJN - last edited 9/10/06