Hodgkin's: One Survivor's Story, Part IV: Chemo, Part 1

From Part III

When I had Hodgkin's Lymphoma, it helped to talk to other people to know I was not alone. When I went into remission, other people starting their journey were helped simply by talking to me. I was amazed by that. The internet is full of information. I hope in that cybersea, I can somehow be of help.

So now I was out of the hospital and have to adjust to the new changes in life the best I could.

The next few days had extended family over a lot. I was exhausted. A hospital stay, pneumonia, and the treatment really did its trick. I also had no appetite, thanks to the chemo. I just didn’t feel like eating anything. The day after I got out of the hospital I had an eye exam so I could get new glasses to replace the cheap plastic frames I had. As about all of you know, an eye doc's chair is perfectly upright (unless it's tilted back to get a good look at your eyes), and I was fighting hard to stay up because I was so tired and weak. We went out to eat afterward, and I barely touched my meal.

And it when on like that for about three days. I finally did eat and got a new thing that I had never gotten before: a bad case of gas lodged in my upper abdomen. What happened was a combination of genetics (family history of hiatal hernias) and that the tumor had displaced my diaphragm Since then, medical people have been alarmed to see a gas bubble there on x-rays, not knowing the whole story.

For school, I had stopped three weeks short of finals. I got incompletes for all my classes except for one where my grade wasn’t going to change no matter what I did. I didn’t have work. So my life was on hold, at least for the mean time.

Relatives came and we went various places, but I got so tired that I’d just lay back down in my room. Other changes were taking place. I moved back home with my parents, clearing out my apartment. My old bedroom at my parent's house was re-decorated and some furniture was put in. I dreaded Christmas and the only reason for that was that the day afterward I was scheduled for another treatment.

Friends of my parents asked that they could do. My Dad just said "a note and a joke." I picked up some good jokes, actually. Many of them from people I didn't know.

I also had a lot of people praying for me. My name was in prayer groups everywhere it seemed. And there was at least one that I didn't know I was in ahead of time. It didn't matter to me what faith the prayers were in, as long as there was no human sacrifice involved. What it was to me was people's expression of well wishing in a way that was meaningful to them. That's what was important, and that meant a lot to me.

Almost instantly, I could feel that lump go down. In fact, the doctor asked the next visit as if expecting an affirmative answer, “is that going down.” So yes, now comes that next visit and scheduled chemo. I went in, got my blood sample taken. To my understanding platelets and white blood cells are looked at because they are collateral damage from the chemo. It’s important that the patient has a white blood cell count high enough to fight off infection. I had taken to shaving with an electric razor because they didn’t have blades that could cut and expose. I was gargling baking soda. Anyway, the “white counts” weren’t high enough. I wasn’t going to get the treatment. There was some sense of relief, even though I know that I had to get the treatment to get better. So I had to wait another week.

I also had a prepared list of some questions. One of them was that we were planning a trip to Utah, which would include skiing. The doctor gave me quite an admonishment even though I wasn’t going to skip out on treatment. My oncologist assumed I was and said adamantly, “you are NOT going to deviate from this treatment.” I haven’t been skiing since treatment, event though that wasn't the issue. Really, we were asking if the cold was going to be all right for me given the immune deficiency. But I was going to be no less susceptible than anyone else to ailments than anyone else in the Wasatch Mountains. We ended up not going because I had to come in the next week and that's when we were planning on going.

Still, my hair wasn’t completely gone, but I was still anticipating the hair loss. My friend and I were joking about how I should wear a wig with a natural hairstyle, except that it would be in some bright color. I chose purple.

The next week was the day after New Year’s. I had done the young person’s New Years’ over-imbibing.. My brother took me out to champagne brunch. Now, I was never clear on the verdict as to whether or not alcohol was a safe thing to do with chemotherapy. Obviously it’s not preferable, but I can report on that and other occasions that it did me no harm. So I had recovered by the next day when I was to get my first treatment on an outpatient basis. And once again, it was my oncologists’ partner, the one who suggested that bourbon be in the contrast solution. He said, with somewhat of an apologetic tone, that my counts were up and “you are getting it today.” So I took my medicine, literally speaking, and spent the rest of my day throwing up. That steroid was awful. I couldn’t stay still and I felt really “squirmy” as I put it, for days afterward.

My dad was trying to assure me that I wouldn’t be throwing up. When we got home, it didn’t take long for me to kneel before the proverbial porcelain god. That was probably the last time of all my treatments that I would throw up in the toilet first. I usually wouldn’t make it that far again. I looked up at my dad who was there in the bathroom with me. I felt after him saying that I wasn’t going to throw up that I had let him down.

I hadn't let him down. What was really happening is that my stomach was doing its job. As soon as the toxins hit the stomach lining, what does the stomach do? It tries to get rid of it. The chemo confused it.The human body is a wondrous piece of machinery even though it...uh...sometimes produces mutant cells. And unbeknownst to me, my brother and my dad went out to get sandwiches one night and my dad started crying saying, "it's not fair. He's trying so hard." So yes, I was not letting him down. It just hurt him to see me go through all this. As a parent, I certainly understand. Oh, well now I've spoiled it on the fertility part.

After a few weeks, I was going stir crazy. So I decided to go back to work.

My third treatment I won’t forget. I was lying on the couch yacking it up when the announcement came on the TV that the U.S. had just bombed Iraq. This was the beginning of Desert Storm, and I had teased my brother a couple of weeks back asking if he was ready to go over. This was when I was still in the hospital knowing if there was a draft, I’d have the “4-F” status in the bag. But the rest of the night wasn’t funny. It was miserable. There were two wars going on as far as I was concerned. I came out of the doctor’s office at about 4:30 and threw up at home. I didn’t stop until about 8:30.

There was another treatment where I was sick – like with a cold. I remember that the doctor ordered a lower dose so that perhaps my body could still get its act together and fight it. He also prescribed an antibiotic. The lower dose didn't help reduce the vomiting. But I ended up recovering from the cold pretty quickly.

I’ve written of the power of talking to someone else. My parents had invited someone that had her first bout of Hodgkin’s when she was 11. She got it again 7 years later. And then about every 2 years it would show up again. She was 29. And man, that was really the first time that I could see everything could get better. I had a chance. She inspired me. I remember being a rude host when my friend John came over (the same friend who gave me the banner in the hospital, joked about the wig, etc.) and we were going out. And I remember riding in his VW bus with him and looking southwestward at the winter sunset with a renewed sense of optimism.

But concrete cause for optimism came about a little later. Around this time, the doctor took a chest x-ray. It was extremely promising as it had shown the massive tumor reduced by about ¾. But as the doctor said, “we still have a long way to go.”

So we continue in Part V