Hodgkin's: One Survivor's Story, Part V: Chemo, Part 2

Continued from Part IV

To start from the beginning, click here for Part I

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.

My parents had showed me a newspaper article (pre- internet) about a new drug called “Zofran.” I latched onto that drug name pretty quickly. It promised to be the anti-emetic to really eliminate those nasty side effects of getting sick. But I was skeptical. It wasn’t like I haven’t been given anti-emetics. How good could this stuff be?

I found out at about the sixth treatment. By this time, I wouldn’t make it home without getting sick, and the periods were getting longer and more miserable. My doctor was asking me about that, empathetically responding to be at how miserable it became. He then said, “Well today, we’re going to try something different.” I almost knew what he was going to say..He then told me about…Zofran. The nurses would get a saline solution going through my veins to open them up, just like they did with the chemo. Then they would put in the Zofran. Then those lovely chemicals that I fell in love with…not.

As soon as the stuff started flowing, I got that metallic taste in my mouth. Now my mind had conditioned my body to react to that by throwing up.  The chemo cocktail had not yet been injected. My doctor walks in and said in his usual dry humor, “boy I’m glad I didn’t test it on you or you would ruin my reputation.” That association with the metallic taste would not leave throughout my chemo treatments.

I went home without incident. I was sitting up and it seemed like a miracle. What wouldn’t escape me is this very hard-to-describe feeling of some sort of weird sickly stuff going through my body. I think it was telling me what was going on in my bloodstream. I can’t describe it any other way, but I felt it. That’s what other people never saw. But it just told my body all was not well. I will say that ability to “feel” what’s going through my body helps me sense if I’m dehydrated, so developing that sense certainly hasn’t been all bad.

That night, my Dad and I decided to play a little trick on my Mom. She went out on an errand, the first in many a chemo night she had been able to do. So we had it all set up like the times I was throwing up: a towel with an emesis basin on it. That was my reluctant friend.

homehealthdelivery.com

Then I lay sideways on the couch, as I had for all the previous times. My mother came home, and if I remember correctly, she was disappointed. But then I got up and of course she realized she'd been had. Later, my brother called I answered the phone and I said that I just had treatment. He was surprised because this just didn't happen.

Chemo – whether it includes vomiting or not, is not a pleasant thing to go through, although the emotions were amplified when I turned up getting sick. There was full anxiety come Tuesday before the treatment. Wednesday was the treatment, and I felt like total crap for the next couple of days.

A post-Zofran would include me taking 2 milligrams of Lorazepam to calm me down so I wouldn’t do the vomiting reaction. That often didn’t work with the reaction, but it pretty much mellowed me out. By the time I got home, I’d crash for an hour or two. And I remember waking up with that yucky bloodstream feeling.and being pretty depressed . The depression would last for days. Now, I've since been diagnosed with clinical depression. Going through this chemo thing could make many people depressed just by itself. I imagine the chemo probably spiraled the chronic part. You just wondered how long you had to take this. Is it going to get better?

At work, there was someone who was wearing this perfume that made me nauseous. If I could, I had to not sit next to her. But why that particular perfume? It turned out that the oncology nurse wore that perfume, and I had associated that smell with the chemo which in turn was associated with nausea and vomiting. My cousin had me smell her new perfume, and I immediately got nauseous. Well, we found the culprit.

theperfumemagazine.com

But this didn't last very long after treatment. So all is well with Yves Saint Laurent.

To this day and much to my surprise because all the other associations have long gone, I still get nauseous at the smell of latex bandages. I chalk it up to a “chemo flashback” and I’m sure every survivor has one and a bad association with some sensation that triggers it.

In March, we were able to squeeze in a trip to Georgia, visiting Jekyll Island and Atlanta. Atlanta was where the head of the baptist prayer ring was. He was a colleague of my mom. He had talked to me months before in Phoenix thinking my prognosis was worse than it really was. He is one of the nicest, warmest, and funniest people one can meet. I remember then I was wearing a pair of old jeans my brother gave me. It was waist size 29, and I was filling it out. I wouldn't be able to wear it much longer.

About April, I had pretty much gained all my weight back. I thought it was time to start working out again, lest that weight all go to flab. It would be a new beginning, and I’d start to get in shape. So I asked my doctor what he thought about exercise to get his blessing. Knowing his sense of humor, I should have known the answer by now: “Personally, I’m opposed to it.” So I reworded the question to ask his opinion “as a doctor.” He didn't have a problem with resuming exercise. So I go off and sign up. I looked at my photo ID that was taken then, and I looked at my picture, trying to figure out what was so different. I know there would be a difference in the hair, but something else was amiss. Oh, right - NO EYEBROWS. And the face was a little puffy, which is common for people going through chemotherapy. I really had a hard time with losing the eyebrows. I always thought they were one of my defining characteristics, at least superficially. But so was my hair,

Now as far as my hair was concerned, it wasn’t quite disappearing. What was happening, though, is that it was getting very, very thin. At one point during the treatment I was being weighed and my doctor pointed at me and said, “he still has his hair.” But it was such an ugly head of hair. Because each strand of hair was a different length, it looked like someone scooped up hair from the floor of a salon and glued pieces haphazardly onto my scalp. On the upside, I could wait until at least three months until my next haircut. And all I needed then was a trim. That would sort of equalize the haphazard strands of hair.

I remember I went out one night, and I remember saying to my friend John that I had two treatments left, and it looked like I was going to keep the hair. I think we did a toast to that.

At this point, I tried to re-take one of the classes again. When I had dropped out, I was taking advanced classes because I was almost done with school. Eventually, I decided just to retake them because it was really hard to jump in the middle and trying to remember everything else. Besides, it was hard to be in class when I had the yucky feeling.

Between the 11th and 12th - the last treatment - there was about a month because my white blood cells and bone marrow seemed to be taking a break. I was flunking the blood test every week I went in for three weeks. It was in this interim period that I started feeling my head and noticing there was some new hair sprouting up. My cousin who at the time was a stylist, spotted these little hairs, confirming my discovery. It was the fourth of July. I was scheduled for a treatment the next day. Funny how a another treatment was scheduled after a holiday.

By the end, there weren't too many good veins left as I had been a human pincushion.  So I think the hospital record of  five was tied during one of the last treatments.

So I went in the the 5th of July and my white blood cell count was the highest it ever was during chemo and my oncologist said that I really outdid myself that time. He also said, “I still never got your hair” and joked that I was ruining his reputation. I took the usual chemo, went home and crashed, and when I woke up, I went and ate a steak, very much aware that I wouldn’t have done that not so long before. My last treatment was done.

But I wasn’t out of the woods yet. Remember the doctor mentioning something about radiation way back? That was still going to happen. But before that happened, I’d have a CAT scan.

Continued in Part VI