Dearest Diana

I would be glad to share my story. I hope it is as helpful to others as other HD stories have been to me .My journey down the Hodgkins path began April 18, 1995. Two months after giving birth to our firstborn.

We were on a road trip and as I extended my arm to the back seat of our car to feed our daughter I twisted my neck. So I began rubbing the soreness. When I did that i felt a small "lump" on top of my collarbone. I thought nothing of it. A few weeks later I made an appointment with the veterans hospital in our state because the lump wasn't going away. To be honest I never thought anything of it. The past four years had taken its toll on my mental and physical health so I just thought my body was reacting some wierd way to stress....meanwhile my husband and i were just released from the military after serving four years, we had a beautiful daughter, and we were both settling in to our lifestyle as poor, struggling, college students. Since we had just left the military i was looking around for medical insurance for myself and our daughter. My doctors appointment was on June 1, 1995. She did the usual examination and sent for a chest x-ray. I still thought nothing of it. As I moved up to stand against the cold x-ray machine my heart skipped a beat from fear and at that moment I felt as if something serious was wrong with me. When i went back in to my doctors room she told me that there was a mass above my collarbone and a second mass in my chest.

She referred me to a surgeon within an hour and he explained what I might have. Lymphoma or Hodgkins disease. I looked at him and asked what kind of viruses were they because I had never heard of them. He said what they thought i had may be cancer not a virus. My first instinct was to run as far as I could because this was a VA hospital and perhaps they were being a bit to aggressive. He wanted to do an incisional biopsy immediately. He explained that a simple needle biopsy may not pull out any Reed Stern cells therefore coming back negative when i may be positive for HD. I still elected for a needle biopsy so I could go home and learn about Hodgkins Lymphoma, get more opinions, and have time to adjust to everything I had just been told. When I was in the military they thought I had a pituitary tumor and put me on parlodyl for six months until I just couldn't take it any more only to find out I never had a brain tumor and it was all a big mistake. So after that experience with the medical community I was a bit skeptic about the cancer. Anyway, I went home and called my aunt who has been an oncology nurse for over twenty years. She said get a second opinion, don't sit around and wait, act fast. I went to the health center because second opinions are expensive and I almost was convinced by the nurse there that I was stressed out and the VA was being to assertive. It was only because i had so many questions she couldn't answer that she asked the supervising physician to examine me. He did. He looked at her...he looked at me...then he said to her 'this isn't stress, this mass is to big, it is my opinion that Tanya should have it removed." I thanked God that he came in because the nurse said everything I wanted to hear and I would have never gone back to the VA for a biopsy otherwise. So, i did and on June 14, 1995 I was diagnosed with HD. My first question was how am I going to pay for this? If only I had purchased medical insurance immediately. It turns out since I'm an honorably discharged vet the Va could treat me. So, I left for SLC on June 18, 1995.

The VA had taken care of all my arrangements. Thank God for the VA. The saddest day of my life was not the day I was diagnosed because for some reason I always felt I would be cured but, it was the morningIi had to leave my precious newborn baby.

I was in the SLC Va hospitals admitting lounge, I was alone, uncertain and I missed my husband and child. I missed her smell, I missed her skin, I missed being with her in the quiet hours of the night. I brought her recieving blanket with me...that blanket went with me through all of my staging procedures and as I slept I held it close to my face so I could dream of my sweet daughter. I couldn't have asked for better care than what I received from the VA hospitals and the University of Utah. I was actually treated at the university as an outpatient. Staging wasn't unbearable physically. I was an informed patient thanks to literature and I wanted to work with my team because i had a family to get back to. Staging lasted five days. Bloodwork, x-rays, CT's, bone marrow biopsy, patient history. They consulted with the University of Utah and Stanford. It was decided i wouldn't need any further testing such as lymphagiogram, gallium, splenectomy. I was symptomless and never would have been in the hospital if I hadn't felt that little lump. By the way when they removed that "lump" for a biopsy i asked to see it when it was placed in the petri dish. If it was cancer i wanted to see what "Cancer" looked like. Well, it looked like a small beige and crimson marble. It looked so, so harmless. I always thought cancer would look like some horribly, colored crater of a growth...

Back to the staging in SLC...my biggest concern, regardless of the cancer fact was my fertility. One thing my surgeon back home had warned me about was all the different medical specialists who would be testing me and giving me opinions. He said not to listen to anyone but my primary oncology/radiation physician. Thank God he warned me. I had PA's telling me my ovaries would be fried, I wouldn't want to have children after chemo or radiation, it was hopless and i had other people telling me differently. I just wanted more children. My breastmilk wasn't yet dried up from my first. Of course I was concerned about my daughter since I obviously had HD while i was pregnant. Luckily it is not hereditary and can't harm the fetus in most cases unless a tumor is blocking oxygen flow or something.....The fourth day of staging I was sent over to the university for prognosis. I was miserable, terrified, and prayed to GOD i would be able to have more children. From the reading I had done in early June, I strongly felt i would be a 1 or 2 a. But, a 1 was probably chancy since I had two masses. Sure enough i was 2A, fertility would be fine, radiation only in two cycles over a period of 3 months, Upper mantle. Since fertility was a concern I opted for radiation only since they couldn't guarantee my fertility with chemo and they didn't believe chemo was necessary in my situation anyway. I went back to my hospital room and thanked God. My husband and daughter arrived the next day.

My daughter and I stayed in SLC the entire Summer while I was treated. My husband had to return home to start school and work. We wanted to keep everything as close on track as possible. The doctors said not to let the Cancer run our lives. Yeah right. My daughter came to the hospital every morning with me. As I was being treated the medical staff would take turns watching her for me. Occasionally my husband would stay for a visit and soon simple trips to Wendy's fast food were like trips to Disneyland. Radiation went well for me. At first i felt like i had morning sickness because of the radiation induced sickness and i broke out with this unexplainable body rash. It itched something fierce. I was tired a lot and it was hard caring for our daughter by myself. However, I wouldn't have it any other way. She was my reason to live and my inspiration. Such responsiblities for someone so young...Oh, I lost half of my hair. The docters forgot to tell me about that side effect. When it started falling out i pretty much got the hint. I took a bic razor and shaved the area that was falling out so it would stop making such a mess. When I wore my hair down you would never know....the last four weeks of radiation would have been unbearable if it weren't for ZOFRAN. I tell you this is a wonder drug. Expensive but oh so efficient. I had upper abdominal radiation which is suppose to have painful side effects with cramping and diarrhea. It did. They gave me other medication to easer the pain but it just gave me headaches. The Zofran was the only medication with no side effects and it completely alleivated all of my pain. It is hard taking care of a baby when you must be on the toilet all day. Once the zofran was started I breezed through it all. I even had two doses of radiation my final day so i wouldn't have to remain over a weekend. My Doc almost didn't allow it but I felt no pain because of the Zofran.

My first follow up appointment was a few weeks after that for bloodwork, urinalysis, and a physical. I actually didn't have my first CT until three or more months later. After my treatment in SLC I was told that with HD masses like mine that any CT would show scar tissue. So naturally, my CT's do. But, know one believes it is active HD. My third CT is scheduled for September and hopefully that "scar tissue" isn't growing. So far so good. I feel fine other than the tiredness, occasional sharp radiation leftover pains, tingling when I exercise, muscle soreness in my shoulder, and mental baggage following a Cancer diagnosis. I don't think it really hit me until after I finished treatment when I had time to realize what just occurred in my life. My big question is "what causes it." I strongly believe in the environmental factor, and a stressed out weakened immune system that just doesn't have the energy to fight anymore. If you knew what I had been through with the military as far as carconiginic exposure, harassement, sleep deprivation, and misdiagnosed illnesses I think anyone would see some type of a pattern that lead to my immune system becomming weakened to the point being defenseless. Not only was I a mess physically, but the military did a number on me mentally that I could never describe with all the words in the world.

On top of all this, I delivered a baby. She is as healthy as it gets. Please, don't get the wrong impression about my military experience, I don't want to be some statisitical rolemodel for people who feel women have no place in the military. Because we do. What I went through was hell. I wish know one that type of pain. I was an asset to the military I was dedicated and hardworking. However, the military ate me alive. When I was being treated in SLC one thing I heard over and over again was that it is always the nice people who get cancer. From what I've read I do believe there could be some type of personality profile for HD. Who knows.....it has been ten months since I stopped treatment i still get anxious before my follow up appointments and sometimes i wonder if I should've pushed for chemo, just to be safe. I've been advised to wait for two years of remission before I concieve because HD usually relapses within that time period if it does come back. If I'm pregnant and i do relapse within the first and second trimester then they recommend a therapeutic abortion. I would never do that so my only option is not to get pregnant. I'm so very thankful God has given me my precious daughter. I guess I should be thankful that HD is the Cancer I had/have since "If you have to have Cancer Hodgkins is the Cancer to have". Who ever came up with that anyway? Tanya

Write to Tanya! Tdarnl@aol.com

©1996 Diana L.E.G. Hinnrichs