When you get an illness like cancer, you can do all kinds of things to prepare yourself for what is about to happen to you, both physically and emotionally. Preparing, having some information as you begin working with your doctors, will help you know what questions to ask them, and will give you some sense of control at a time when so much of your life will feel like a runaway train. So educating and preparing yourself is a good thing.
- You can research it, being cautious about going to reputable sites with a strong medical track record. It's the Internet, people, and there are a lot of trolls and kooks out there with too much time on their hands. And you don't want some twisted 18-yr-old giving you advice about treatment under the handle Dr. FeelBetter(Suckers) on www.DrsRUs.com.
- Ask around. Your friends or your friends' friends may have already gone through it. While every patient's experience will be unique to them, it can help to learn from someone who has lived it.
- You may not feel up to a full exercise routine while you're in treatment, but if you're going to be lying in bed a lot, you may need physical therapy, a chiropractor, or a friend to go walking with you. You may also need to consult a nutritionist if your treatment is making it hard for you to eat certain foods.
- You can find a local or online support group, or a therapist who specializes in working with patients who have your disease.
But here's the problem: you can do all those rational, practical things. You can make plans. You can stay determined that your cancer (or other illness) is not going to take over your life.
That will work for a while. Until those curve balls start flying at you.
I was absolutely determined that my cancer was going to be nothing more than a blip on the radar of my life. I follow doctor's orders. I document everything in a journal, including which medications I take and when (and that list of medications has been growing to include pain killers, iron and folic acid supplements, and stress reducers). Pre-cancer, I used to take 2 standard meds per day; now I'm up to 9 to 11 daily and it's like my day revolves around those little Monday-through-Friday pill boxes, 3 x/ day. It's a drag. So there's a curveball, right there: I wasn't expecting to have a home pharmacy (and you should see the drawer of stuff I tried for certain side effects but which I am no longer taking).
I didn't expect my cancer to spread to a second organ and to have to change chemo, but it did. MASSIVE FUCKING CURVEBALL.
I didn't have pain, at first, other than the surgical recovery period. Now, I do. Curveball. I didn't have back pain (a longstanding problem unrelated to my cancer) much at first, because I was able to get out and do things to move my body, take walks. Now I have more back pain because since late April I've been in bed most of the time. Curveball. I had fluctuations in my energy levels in the beginning of chemo, which the doctor warned me about, but at least I had good weeks and bad weeks. Now, I have very little energy and part of it is because I have more nausea now than I did before and I can't eat enough. Nausea + inadequate nutrition = Curveball.
I won't be able to see Paul McCartney on Thursday, either. BIG FREAKING CURVEBALL, but I just can't sustain the energy to walk a stadium and last through a long concert. (Georges is going to take the Garçon which actually makes me really happy as an alternative.) But you know this one is breaking my heart.
Sometimes the curveballs are happy ones, though. I had been trying to schedule a visit back home over the summer because it's been more than 18 months since my last visit, but a few weeks ago it because clear that wasn't going to happen. So my sister decided she, her daughter and my mom would make the trip to Paris to see me, and whatever shape I'm in in when they get here, it will be fine. They're here to see me, not Paris (although hopefully than can do some of both). That's one curveball that sustains me and makes me really happy.
The challenges go from accepting that you actually HAVE cancer and getting through those early steps in whatever your treatment entails... to dealing with all the lousy curveballs, and there are times when that task seems monumental, almost impossible. They just come at you out of nowhere. If you're lucky, you've got a spouse or a partner or a few close friends or a sister to whom you can vent when you need to, and the reality here is -- you ARE going to need to vent. A LOT. You are going to need to cry, and scream into a pillow, and soak your husband's shoulder with tears. You're going to have to admit you really DON'T have it all under control, all of the time. That really sucks.
You will not feel like taking a shower or washing your hair some days, and you will feel dirty and gross. Get over it; you're allowed, it's not the end of the world. You may not get out of your pajamas for weeks at a time; that's OK too because you need to be comfortable. Sometimes, you will not feel like talking when people call to check in and see how you're doing, and you need to put yourself first and explain that you appreciate your friend reaching out, but you're just not in the mood for a chat. It actually DOES help (at least, it helps me) to pull yourself out of your little cancer bubble sometimes and ask your friends about how THEIR lives are going; it feels good to think of someone else other than yourself whenever you can. But if you don't feel like talking about your illness, then don't feel obligated. I talk to Georges, to my sister, and to one or two close friends regularly, but beyond that, I have to pace how often I'm communicating updates with my wider circle of friends because it's just plain exhausting to tell the same stories over and over. In the beginning I thought about creating a special private blog to deal with this, but in the end it felt like too much work, so I gave up on that idea.
The bottom line is, a serious illness is going to kick the living shit out of you for quite a while. You can't put a timeframe on it; it really is a one-day-at-a-time situation -- with a lot of curveballs -- and you just have to get over this new reality and curve WITH it. Tell your doctors what's going on and what's working or not working, keep them in the loop, and just follow what they tell you to do. It will help.
This is just not a situation in which you can do it perfectly. Yeah, I know - I hate that, too.
*BTW, I closed comments on this post because I'm not looking for advice or commentary about my treatment. But I know you're all out there rooting for me, and that means a lot - Thank you! I'm just writing this to vent. :)