Now to Interferon UGH

  I decided on Interferon, even though the therapy was controversial due to it's questionable success rate, because I knew I was not going to be able to "wait and see" . That part of my personality, the part that lets you wait without out taking every personal action I can, is sorely lacking. I went through the expected side effects with my oncologist. Did all the reading I could. I talked to peer support volunteers who had been through the protocol and thought I had a handle I what was goin to happen. Yeah, I thought I did.

  The first part of the 52 week plan was four weeks of daily IV Interferon with normal saline at the Chemotherapy lab at the hospital with weekly blood tests. I had been warned about a "metal" taste in my mouth, chills, headache, myalgia, in essence flue like symptoms but I was not prepared for what happened. I, much to the chagrin of the suite nurses, opted to not have a port in my hand. For me it was to exposed, anyone walking down the street could guess I was receiving some kind of treatment and I wasn't ready to share with the world. I have never been afraid of needles so I watched calmly as the IV was inserted. First the saline was hung and started to flow, then the Interferon. As soon as the Interferon hit my blood stream I tasted it, a taste I would live with for the next year. Not metal, I think I could have managed that better. All I could taste was band aids! You know the smell of plastic band aids when you open the box? that's what I tasted in my mouth. The infusion took about 40 minutes and off I went. Didn't really feel to bad, but that didn't last long.

  By the time we arrived home after the 45 minute drive from the hospital the headache hit. It was like no pain I had ever felt. No caesarean section, colectomy, or abscessed tooth had ever hit me like the pain in my head. I knew I could take Tylenol but after taking that I might as well have popped a couple M&M's, at least I might have enjoyed the chocolate. All I could think of was floating in water. We didn't have a hot tub so off to the bath I went. I filled the tub with the hottest water I could stand and submerged myself, head and all, until the water got to cold. It helped a little. By that time the chills had started. It was August and in the high 80's but I was wrapped in a down quilt freezing. I finally fell asleep about an hour later and woke up after about another hour and the worst of it seemed to pass. The headache was tolerable, the chills were gone by I was exhausted. I tried to eat but it all still tasted like band aids so I grabbed an orange pop ( I was to drink a lot of these in the next 52 weeks) and that wasn't bad. Tomorrow I would go again and plead to be able to take Ibuprophen hoping that, that might ease the pounding in my head tomorrow.

  The next day I went and requested that I be able to use Ibuprphen and got the go ahead. Same headache after but it was manageable. My nurse also gave me hope when she told me that most patients only experience those head splitting headaches the first few treatments. By the time Friday came I had a bit of a routine. Take the Ibuprophen before going, bring the quilt in the truck, crawl into bed when I got home and emerge a couple hours later, exhausted but functional. Next morning I was fine. This lasted for about two weeks and then I hit the wall. It was just like a wall, Every step felt like I was walking in water. The fatigue was debilitating. I could manage to walk upstairs to the bathroom but then that required a 10 minute rest. The headaches had subsided and the chills only lasted about one hour now but the fatigue, I still can't adequately describe how my energy so just depleted.  I was so fatigued it was tiring to speak. This all lasted for four weeks. I knew if I just made it to the end of August I would then go on to the decreased dose and injection phase. It seems that I pretty much slept through it because after the first two weeks all I really remember is being at the hospital. It was Labor Day now and I was done this part. The part that everyone said was the hardest. The next part was to last for a total of 48 weeks and would start after the long weekend, but for now I had a break so I was going to enjoy that. We sent our daughter off to University, got our son ready for AAA Hockey, and got our other son prepared for the year off school he would have to do because he changed his program at college. All these things would in their way, help me through the next year though I had no idea of their upcoming importance.

  The next phase will take a few posts. That phase was full of fun little side effects, ups and downs, decisions and revelations.  I will start to tackle that phase next time.