I think I mentioned this in my last post, but I’m tired. Not just a little bit, but down to the bone weary. Getting off the couch or out of bed is a struggle. I have to give myself a “you can do this” pep talk before I can take a shower. A trip to the grocery store seems insurmountable. Once I actually get up and start moving, I’m able to get around, but I still feel weak, and the fatigue never leaves me.
I’m still doing me best to walk every day, but it doesn’t seem to be doing much in the way of restoring my energy.
I had originally thought the narcotics were causing me to be so tired, which is one reason why I’d been in such a rush to get off them. So when the pain medicine doctor came out last Tuesday, I asked him about it. He told me it was okay to stop taking the OxyContin, but he didn’t think that’s what was causing the fatigue. He thought it was probably the “chemo.” He said even though the Keytruda is an immunotherapy drug, it can still cause fatigue (I knew that); and there can also be a cumulative effect (nobody told me that!).
So now I’m faced with a dilemma. Nobody knows how long I’m supposed to stay on the Keytruda, so do I stop taking it and risk the cancer returning or do I continue to live with this almost debilitating fatigue? I guess we’ll see how much more this body can take.
All of this has started to take a toll on me, and I find myself crying a lot for no apparent reason (Don’t give me the Facebook crying face or I’ll cry more.). I say that, but there are some underlying reasons that just seem to come out at odd times:
- I’m tired!
- I was doing so well. It feels like I’ve spent the last two years taking one step forward and two steps back.
- I’m scared. What if the fatigue becomes disabling, and how much worse will it get as I age? What if something happens to my husband and I have to take care of myself? What if the cancer comes back?!!!!
- I’m angry. In fact, some days I’m pissed off at the world. I’m mad that this happened to me in the first place. That I can no longer hear music or sing. That I’m spending so much of my life sitting in doctors’ offices. That almost every moment of every day is a struggle. I want my life back! And then I feel guilty for being mad when there are others who have lost so much more than I. What right do I have to be angry? And that makes me cry more.
I’m…human. I don’t think most people who have cancer (myself included) are the brave warriors people often make us out to be. We were thrust into a battle with inadequate ammunition. There was only one choice: Do you want to live or die? So we did what we had to do.
I admit to occasionally wondering where I would be right now if I’d just given in to the cancer. But I feel like I’ve made the right choice. So I’ll continue to soldier on.
Why can’t you hear music or sing?
The chemo damaged my hearing and the radiation damaged my vocal chords.
We love you, Julie. I hate being tired, so I can only imagine.
Love you, too.
I’m paraphrasing this ” courage is not having the strength to rush into a battle. But being scared shitless a going anyway. “. People are fight or flight, most of us meet humans will fight. We fight for life, liberty, and our versions of happiness every day, some are just longer stronger fights that we have to fight , I think that is your fight of two years and counting.
I know I am prejudiced but I say you have every right to be tired, to be cranky, to cry for no reason. I think you got a lot of reasons to want to cry, and be honest crying never hurt nothing, sometimes it’s all we can do.
I am sorry you are tired all the time, I have no advice on how to get back to life as you want it, but keep putting one foot in front of the other and one day you will be there.
Thanks. Love you..
Sorry for all the typos, I really should only type on a screen at least as big as my laptop. Love you,and one step, one foot at a time.
I’m still reading and following your journey… Give it a bit more time to assess the Keytruda effects on you. Rest and recover and try not to expect answers right away. Your body is still resettling from the chemo.
Julie,
If anyone ever deserves a right to feel all the emotions you are feeling, it is you. We all have a breaking point and often it is just what we need before we get in the saddle again and say “To hell with it”.
There are so many ups and downs in the battle of just everyday normal life and this is so much harder. As I told you last time, you amaze me with your strength. Hopefully saying what you are currently feeling will comfort some.
As for feeling tired. Have they checked your thyroid? When Jack was battling his cancer and was so tired, I did some searching online and that was something that was mentioned. I asked the Dr. (who doubted that was a problem) and when he ran the test he found it was “off”. I also noticed when he was dehydrated it zapped his energy.
Another thing is vitamins. Don’t know if you can or do take them, but I can tell when I forget mine. You might ask your doctor. How about energy drinks???
It is always difficult to know what to say to someone and I wish I had the words to make it all better for you. For now, all I can say is I love you and am praying for you.
Sharon