Tuesday, September 13, 2011

Feeling cancerey

I had the first treatment for round 2 yesterday. It was basically as planned, which is not to say that it was uneventful. The 2 drugs that they give me, Carboplatin and Gemcitabine, both can cause nausea. We had to stop the treatment more than once and slow down the flow becuase I was afraid I was going to vomit. Everything takes longer than planned and I grow weary of doctors and nurses telling me that "it shouldn't be causing nausea" becuase it is, for some reason, causing me nausea. Does that mean that I'm imagining the entire thing and stop whiling, or does that mean that perhaps we should dwell not so much on the middle part of the bell curve where the "average" patient sits, but on me--the patient sitting in front of you that *is* having this reaction, regardless of whether I should be or not?

I also grow weary of doctors, hospitals, clinics, waiting to have my name called, appintment makers, picking up prescriptions, having by blood drawn, weight taken, my lungs listened to and my blood pressure taken. I hate being asked about things that are right there in my chart, and I really hate being asked how are you feeling?" by doctors, nurses, and nearly anyone because it is never a short answer when you've got a laundry list of things going on and subtle-to-severe side effects of the various meds and chemo drugs that push and pull at each other. And I always feel that I should answer "fine" becuase that's what we're trained that people want to hear. Do they mean on a scale of 1-100 with one being dead and 100 being rapture? Are any of us really better than about a 75 on this scale? (29). Do they mean compared to yesterday? (not in as much pain, though my mood is worse and I am more fatalistic -- so is that a net gain?)  are they asking about my blood pressure (normal) my digestion (unpredictable) my pain (changes hourly) my depression, (changes hourly as well), my weight (down) my 12 month outlook (average) my appetite (none) my nausea (changes hourly), what? How do I answer this? Do they mean compared to pre-cancer days? (very shitty). Today I finally decided on "cancerey". Which is annoyingly vague (as annoyingly vague as the original question can be). What should one ask? Specifics are good, and will help me to answer in a useful way, if information is desired. Though my health concerns occupy 92% of my own brain processes at any given moment, I am always happy to talk of nearly anything else as a distraction.

On the subject of nausea: problem with the nausea is that not eating makes it worse, and also eating makes it worse. So during chemo you know that if you're feeling nauseous it probably means that you haven't eaten recently enough, but the process of eating now will make it worse. But if you wait, it will get even worse. So this is why, in my experience, anti-nausea remedies (prescription and herbal) are so helpful to people undergoing chemo. These days I set a timer for 2 hours and make a point to have something little. This avoids most of the not-eating nausea as well as the eating-nausea.

I have been sleeping an enormous amount recently, which is good in terms of recovery, but might be hinting at depression as well. The cause is easy to see, but fighting it off is difficult without medication, since it is increasingly difficult for me to do the things (get lots of exercise and sunshine) that can prevent depression. I may need to add in one more pill to my daily handful, though I hope not. If I can get this bout of chemo finished before winter, I think my chances are good at staying off antidepressants.

Other than that, how am I doing? About the same. Still angry at this thing and tired of the myriad of social/emotional garbage that comes with the physical junk. My most recent source of frustration is that the back pain has been returning. This has been severe enough that I stopped tapering off the methadone and actually went up on my dosage yesterday. I'm still at less than I was (they started me at 30 mg per day and now I'm at 15) but it makes me angry that I will have to stay on this toxic and addictive drug a little longer at least. The side effects are severely life changing, and you do not want to be on this drug. Is it better than the pain? On the whole, its about even.

I get chemo another treatment next Monday, and then I have a week off. I'm not sure if I'll have one more round before my followup PETCT scan or not. The followup scan will tell us if the chemo is working and will give an idea of how many more round I'll have to do this year.

I have been told that "chemotherapy is in my future" -- meaning I'll likely have to do a few rounds every year for the rest of my life. The docs have explained to me that these treatments are "palliative and not curative" meaning they have no illusion of making this cancer go away. It will always be there, it is now just a mater of baling out the sinking ship for as long as we can. So that might be contributing to my depression as well.


Kelly McCullough said...

So sorry you're having to go through this, Mike. I keep trying to think of more helpful or cheerful things to say, but every time I come back to: cancer sucks, that I'm sorry it's got its hooks in you, and that I hope that your outcomes are the best that you could possibly hope for.

Anonymous said...

"Fine" is just a four-letter word starting with the letter "F". I can just imagine how unnerving the redundancy of routine "pleasantries" must seem, especially now. You don't need another reason to feel nauseous! Mister Michael, I follow your blog and keep you much in mind, of late. I send religion-free prayers regularly! BE WELL!! -Anya K.

Emily said...

i'd be depressed, too.

Nickster said...

FINE - freaked out, insecure, neurotic and emotional. How about you, doc?

This brings to mind an old Mad Magazine bit (The Lighter Side of Medicine, I think) where the doctor asks, "How are we today?" and the patient replies, "Judging by the way I feel and the way you look, I think we're both in trouble!"

Deborah in MN said...

Michael, I'm praying for you every day. Please know I wish so much you didn't have to go through this. I've had a little taste of some of what you're going through and I ache for you.

You described just how I feel about the "How are you?" question (well with my own ailments substituted). I suppose it's open-ended to see what's most on your mind, but I find it short circuits me too, because I'm trying to figure out what they want to hear.

As for the anti-depressants, why not? I'm glad I started on them before all my medical issues came up. They help me sleep better and feel better in general. I know it's another drug and I don't like being on drugs either, but I have come to terms with the ones my body needs and I believe my body needs help with serotonin or whatever they help. You and I have many of the same genes, so my experience may be more meaningful than others'.

Your comments on nausea were helpful, too. That explains some of how I felt in the hospital when I couldn't or wouldn't eat. Of course, in the hospital, I couldn't order small amounts every two hours, unless I ordered things I could save in the frig in my room. I'll remember that if I ever go through something similar. (Heaven forbid.) I am a little nervous about seeing the urologist this week.

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