Life's Journey

Now that I'm on the Doxil chemotherapy agent I'm getting treatment once every four weeks. I'm finding that there is a pattern in how I feel each week. Thought it would be helpful to share what I've learned with all of you. I share these findings for a few reasons. First and probably most important reason for sharing here is to help anyone else going through treatment. I'm hopeful that those of you that are battling the beast and reading my blog get some kind of benefit in finding that you are not alone and maybe helping you deal with some of these side effects too. Second, I think it's helpful for everyone around me to really understand what I'm going through. There are times that I go "undercover" or MIA, maybe this post will help you all understand why that happens. And it's not just me and my friends and family, but anyone else that may be reading this that knows someone going through treatment, this may help you understand the things that most people going through treatment don't want to talk about. And third, looking back over my posts helps me remember what coming, what's worked, and how my side effects have changed. So, here it goes…

Week 1 - this is the week of treatment. I've been getting treatment on Tuesdays and I find that by Friday the Doxil has started kicking my ass. I can usually make it through the weekend, but by Sunday evening I'm down and out. The pain really starts to increase by the end of the week and I'm taking extra pain meds to help. This generally means I have at least one day that I would rather sleep through than get up and try to face the day. The pain is too intense, my tummy feels like crap, and I'm so exhausted I would rather just sleep through the day. Sometimes there are two of these by the end of the week. I get crazy tired and I'm usually still constipated from week 4 (this will make more sense later). There is no chance of pretending to be human by the end of this week.

Week 2 - still on the downward slope. With other treatments I would sometimes start feeling better by week 2 but with Doxil that doesn't happen. I find that tomorrow will be worse than today during this week. This is the week that my tummy starts it's rollercoaster ride from hell. It usually starts on the first day of week two and is at it's worst through this entire week. I don't get much sleep this week because I wake up in the night with pain and burning sensations in my abdomen. The nausea is sometimes unbearable and other times just a nagging bitch. The bowel explosions begin and I just generally feel like shit. I find that toward the end of week two if I go into the doctors office for a bag of fluids it helps give me a little boost because no matter how hard I try I get dehydrated. Gatorade should call me and offer me stock in the company by now because that's pretty much all I drink this week. And the fatigue is ridiculous. There are days when I can barely get up out of bed and find myself falling asleep all the time. Literally, all the time, we will be driving to the store and I will fall asleep in the car. I don't want to eat this week because everything looks, sounds, and smells gross. This is the week I find I go MIA. I'm 100% a cancer patient this week and I just want to crawl under the covers and cry.

Week 3 - recovery begins. By the end of this week I finally start feeling like tomorrow will be better than today. This is the upward slope. I'm still dealing with much of the tummy rollercoaster but it starts easing up by the end of the week. The nausea is still pretty intense at the beginning of the week and I find I'm taking extra nausea meds. But, by the end of the week I'm able to ease up on the meds and feel a little better. I'm still tired, but I'm able to get out and do things with my friends. (I'm at the very end of week 3 in my current cycle and yesterday I spent the day with friends and had a great time but found today I needed to rest and recuperate.) This is also the week that the general body pain starts kicking in. By the end of the week I will often wake myself up in pain at night and have to take extra pain meds to help me sleep.

Week 4 - starting to feel like a person again and not a cancer patient. I start to get my energy back this week and the tummy rollercoaster ends. But, the end of the rollercoaster is when the constipation sets in. I'm still trying to find the balance on this one. I take laxatives every day and during this week I increase and add extra things to try to help during because I know it gets bad but nothing seems to be able to "prevent" it from happening. (This is what lingers into week 1 of the next cycle.) The pain gets more intense this week. I'm not sure why this happens, I'm on an upward slope and starting to feel human, but the general body pain intensifies. It's quite frustrating, but it's all part of the cycle. By the end of the week I'm really starting to feel like a person again… just in time to get my next chemo and start the cycle all over again.

Obviously this isn't an exact science and there are variations in how I'm feeling, but this is the general pattern. I'm finding balance in some of my meds for side effects, but still learning in other areas. For example, now that I know that the worst nausea usually sets in week 2 I can start taking compazine more frequently and add benedryl and ativan. Next cycle I am going to try steroids and ativan for the nausea and see how it goes. But the bowel issues I'm having a really hard time with. It seems no matter what I try the rollercoaster happens between explosion and constipation and I have yet to find balance here. But, now that I realize what the cycle is I'm going to try to start increasing my laxatives in week 3 to hopefully prevent the explosion in week 2. Hmph, we'll see if that works but I'm not feeling super confident.

I hope this sheds a little light into what it's like to live with cancer. Life with chemo is a guessing game. You never really know what tomorrow will bring but I go to bed every night hoping that tomorrow will be better. And every day I wake up grateful for the gift of today.

Sending hugs and smiles,

Sarah