Cancer Part 3 - Chemotherapy

In the early fall of 1998 we were sent to Dr. Alton Wagnon. He would be my primary oncologist through this entire mess. This is when reality set in. In our 2nd or 3rd meeting, Dr. Wagnon had researched my cancer enough to lay out a plan of attack...and let us know what the odds were. Less than 15%. I had less than a 15% chance to be alive after 5 years.

Osteosarcoma in the trunk, especially in the area of the chest, and encroaching on the spinal cord, is VERY rare. I cannot remember exactly how many cases he said there had been in the literatue he researched, but it was in the low double-digits. Most often osteosarcoma occurred in teens in the long bones (legs, arms, etc.) and resulted in an amputation to remove the disease. In all surgeries involving malignant tumors, the goal is to remove the tumor with a margin.

It was explained to me to think of the tumor as the pit of a peach. In the surgery, they want to remove the entire peach. This makes it much more likely that you will survive as the cancer cells can be migrating in the space around the tumor, and removing that extra tissue means you are keeping the cancer from growing. This is different from metastasis, which is when the cancer moves to entire other body parts (lungs, liver, lymph nodes, etc.) but along the same lines.

Keep the cancer from growing or moving, kill it, and remove it, and maybe you will survive.

In my case removing a margin was impossible. My tumor had grown into my spine and was beginning to encroach upon the dura, or the lining of the spinal cord. So, since you can't live with a good 3 or 4 inch chunk of your spin removed, there was no way to remove the tumor with a margin.

So we had to hope that chemotherapy would do the trick. Heavy chemo and lots of it. I had the good, and bad, fortune of being young, big, healthy, and relatively strong. This meant a heavier load of chemo than most people get. My doctor told me that during his 30 years as an oncologist he had never adminstered these drugs in such heavy doses before. Lucky me, huh?

My first chemo treatment was September 15th, 1998, a Tuesday. We arrived at the hospital early in the morning and they ushered us to a room. The nurses came in with all the admissions paperwork and took my blood pressure. I cannot remember the exact numbers but I can tell you that it was 170-something over 110 or in the 1-teens. That is EXTREMELY high. I never have felt so much anxiety in my life. They gave me a few minutes to calm down to get my blood pressure down and once it dropped below 90 on the low end, they started the IV.

My first regimen of chemo consisted of 2 drugs, adriamycin and cisplatin. Both were IV administered. The cisplatin was given as a drip over a day and a half, and the adriamycin was a "push". They used a huge syringe to put it into the IV and pushed it at a measured rate. The really freaky thing is that adriamycin is bright red. They call it the red devil.

I know it was mostly in my head, but when I say that line of red in the IV enter my arm, I could feel it hit my body. It was a horrid feeling. Like that full-body shudder you get when you think about eating something vile, or see someone throw up, or see a graphic picture, like of an open wound. I could taste it too. It was kind of a faint metalic taste, almost like chewing on aluminum but not that strong, kind of in the back of my throat.

I was in the hospital for 2 days, receiving cisplatin in a slow drip, and a push of adriamycin. They then sent me home overnight, and I went back the next day for a second adriamycin push.

This was the regimen for the next few months. 2-4 days in the hospital, then home for 3 weeks.

Rinse, repeat.

I cannot describe to you what chemo feels like. I am sure it is different for everyone, but for me the best way I can describe it is to imagine the worst flu you have ever had...the body aches, the runny nose, the woozy kinda half-awake half-passing out feeling, the head aches, but especially the body aches...then multiply that by about 1000. Everything hurts.

I could feel my hair, until I lost it anyway. How is that for weird. And it hurt. It was almost impossible to get comfortable, because it hurt to touch your skin...well hurt is not exactly right, it was like it was over-sensitive, like when you have a really strong fever, and it bugs you for anyone to touch your skin. It also made me feel restless, like I had ants crawling on me...not so much itchy as, well, squirmy maybe.

After about 2 days another disquieting sympton set in: my hearing and vision changed. I felt like I was in a tunnel, everything around the periphery of my vision was blurred, my hearing was like I was inside a tin can. Everything sounded muddled, no sharp tones, no highs and lows. Take your speaker system and turn the treble all the way down, and the bass all the way down, and the mid-range all the way up and that is close.

Another change was to my senses of taste and smell, and of course, nausea. The chemo attacks cells that are rapidly dividing, and the cells in your digestive tract (mouth, throat, stomach, intestines) replace themselves more frequently than any other cells in your body, which explains why chemo patients get sick - the chemo is actively attacking your gut, so you throw up. I could no longer taste sweet very well, and sour was muted too...so everything tasted salty and bitter. Ice cream, soda pop, chocolate, pizza, ketchup, everything. Ice cream has more salt in it than you think. I could taste it. And all I could smell after a time seemed to be the chemo itself.

Everything smelled, and tasted...I don't know...wrong. Just wrong.

With that change, and the fact that throwing up had become the norm, it was small wonder that I lost around 75 pounds while on chemo. I gravitated to foods that I expected to fit this profile anyway: salty and/or bitter. Dark chocolate was ok. I ate a lot of chicken soup and other broth-based soups, since they were expected to be salty. Pizza was ok too, but it upset my stomach.

I took anti-nausea pills (anti-emetics) to help with the nausea, but they were only partially effective. One of them was experimental at the time and cost more than $80 per pill. Crazy.

Along with all this come lethargy, weakness, mouth sores, sleeplessness and countless other annoyances, from little to big, that are things you might not think about when you think about someone having chemotherapy. At one point I had to go get my driver's license renewed, and in the photo I look like death warmed over. I could have passed for a 60-year old man who was not in good health.

Another intersting thing was that where they put in the IV in my arm for these first few chemo treatments I experienced calcification of the vein. You could feel it like a stick under my skin and see it as a dark line. The vein closed off and they had to find a new place to give me the chemo. This resulted in my second surgery, to implant a portacath.

It was implanted just under the skin on the upper right side of my chest, and attached to the muscle with a suture. The catheter was threaded around my collar bone and down straight into a vein leading into my heart. They accessed the portacath by jabbing a needly a little thicker than a thumbtack stright through the skin into the center of the portacath. There are lots of fun stories about this as well, that I might get to in another post...like the time the nurse was new to this and hesitated, then glanced the needle off the edge of the cath under my skin and jabbed it into my chest wall instead. FUN!

Here are a couple of pictures of the actual portacath they inserted into me, along with the needle marks from accessing it.

In this one you can see the needle punctures and even a gouge in the metal from when they "missed" when inserting the needle.

The worst part about the chemo was what it did to my psyche. I know that you truly cannot undestand if you have not been there. I felt like I was not really alive, but just kind of "there", and I did not want to be anywhere anymore. The worst thing probably was how my mood changed. Glynna remarks on this in her journal at that time. I felt dark. I was mad at God and ready to give up. The really bad thing is that for the next year, it did not get better. I had my moments, the times in between the chemo when I recovered somewhat, the good days (we were looking at some of the pictures from that time and remembering that good things happened that year too), like Halloween and Christmas. But in lots of ways I did not recover from that dark feeling.

Later my doctors would label it post-traumatic stress disorder, but that is another post.

On September 30th, my hair started falling out. Jordan and Glynna pulled it out in clumps. What was weird, and what you can see in these photos, is that it does not all come out. I learned that is because chemo drugs work by interrupting cellular mitosis, meaning they affect cells as they divide. Your hair follicles divide fairly regularly for your hair to grow. But some of your hair is "dormant" for a period of time, and so the chemo won't work on it. Here are some pictures of that time.





Now, here is the handsome devil we all know and love!

This first regimen of chemo lasted until a few weeks before Christmas, 1998. I had receovered enough to have a nice Christmas. I remember feeling ok, or as ok as I had up to that point. It was as good a time as we had during that year really.

The next trial was about to begin. That will be the topic of my next post, but to give you a sneak preview, I spent about a week in the hospital battling pneumonia caused by the chemo over New Year's.

And I will finish the story about chemo in another post. Sorry for the long read.