My story begins in 1983. I was a student living at home, working full time and attending college nearly full time. I was determined to lose weight and began a fairly intensive workout/diet program to lose 30 or so pounds. The weight came off quickly, like in less than 2 months. I thought that maybe being 20 years old and working my tail off made it that much easier to do it. I noticed severe night sweats (we live in Kansas and this was August) but figured it was summer, and, well, I was hot! But, these weren't ordinary sweats; I would awake so drenched in sweat that I had to change all of my night clothes. I also felt run down, but, given the schedule I had, it made sense to feel that way. I literally shrugged it all off as just the price I paid for the choices I made (exercise, work, school).

I felt the "lump" while working out. It was a knot on the right side of my neck. I thought I had pulled something, or, that it was a swollen gland, because I had been plagued with sinus type problems and figured I had swollen glands. But, my fingers always felt that lump, as it grew slowly over the course of a few weeks. Then, I developed itching all over my body. I changed soaps, etc. Nothing worked. No rash, just intensive itching. I went to an ear, nose, and throat specialist who immediately questioned me about my lump. How long had it been there, had it grown, etc. The following day (Sept. 28, 1983) I was having a CT scan. I told the technician that I wanted to wait and speak with the radiologist. I could tell that the technicans were aware that there was a problem. My mom and I then were called into the radiologists office and he showed me the scans. He said, you have Hodgkins disease and it is very "active". You have at least one tumor in your neck region and another far larger one roughly 1/2 the size of your chest cavity". He said that this will kill me quickly unless we were to act swiftly.

I remember stumbling out of the hospital with my mom, and crying uncontrollably. I felt as if I had been punched in the gut. I felt very shaky. The following week I had surgery to remove the tumor in my neck that was growing like a vine up my jugular. I was told before going under that I could lose the use of my right arm or could die because of the location. I was relieved to come to, wriggle my arm a bit and throw up all over the nurse.

Over the course of the next 2 weeks, I had a gallium scan, lymphangiogram, several other x-rays, and a bone marrow aspiration, done without any anesthesia. that was very painful. I was found to be a stage 3c I think. I then was transferred to the cancer ward and given my first dose of MOPP. I was violently ill for 12 hours. Then, I fell into a deep sleep and awoke feeling hung over. I remember eating a pork chop and scallped potatos and thinking they tasted like metal.

When I came home, I was quite fearful of not having the type of secure atmosphere the hospital provided. What if something were to happen? There were no monitors to check my vitals? I was depressed. I also developed bleeding of some sort and wound up back in the hospital for another three weeks because they believed I had more disease than they thought before. I had a laparatomoy, and my liver and spleen looked clean, and my appendix was about to burst, thus explaining the abdomoninal pain I was having.

I returned home and resumed chemo. It went ok, but my veins gave me a lot of trouble, collapsing, etc. I also was very weak and dropped more weight, down at one point to 103 lbs. ( I know the IDEAL weight for most gals out there, but, I looked horribly thin!).

After 9 months of chemo, I started radiation treatment for six weeks. My skin turned a leathery brown and my hair fell out. That was especially hard; I also had very little energy. But, I then finished and enrolled at the University of Kansas and have been in Lawrence, KS every since.

I now have 2 beautiful children, Sam who is almost 7 and Georgia is 2. I had difficulty with both pregnancies, possibly related to the treatment. This last fall I had a recurrence scare when another lump appeared in virtually the same spot on my neck. I had some symptoms, fatigue, sweats, weight loss. My ENT was I think convinced that I had a recurrence, but, after doing a biopsy, discovered it was a thyroid disease instead. I was diagnosed with Graves disease, which is a disease of the thyroid in which the body attacks the thyroid as if its a foreign object. I felt awful, but, after a few rotten months on anti-thyroid meds, have now become hypo-thyroid so am sluggish and fat again. I now take a synthetic thyroid pill everyday to trick my body into thinking I have a thyroid, thus, more energy.

The thyroid problems are a common by-product of the radiation treatment. New HD patients should ask their oncologist about the lasting effects of the chemo and radiation treatments.

Thirteen years later, and I am still here. I have a lot to live for, two beautiful children and a wonderful husband. My daughter was diagnosed with hydrocephalus at the age of 7 months. Hydrocephalus is a potentially fatal brain disease in which water does not drain properly from the brain. She has a shunt that drains the excess fluid and is doing fantastic. I believe that my own health problems have helped me so much in dealing with for example, my daughter's illness. I already knew how to interact with the hospital staff and not back down when I felt like I might lunge at them! I also am interested in pursuing my education and working with families in a health crisis situation. I would like working in a hospital setting.

For those out there fighting this disease; ask questions, write down questions as they come to you. When you don't feel "upbeat" then, thats ok, too. Its going to happen. Exercise. I kept my exercise program and believe that really helped me. Keep busy. And remember, there are a lot of us out here who are alive years later, and doing ok.

Blessings,

Rose

Write to Rose! Rose@law.wpo.ukans.edu

©1996 Diana L.E.G. Hinnrichs