Cancer talk

Hello all, and Happy New Year! Thanks for reading my rambling blog posts. I am doing fairly well, and I continue on the same two chemotherapy agents. Right now I have something on my mind that's been bugging me. About myself, and also others.

In the past, I've been guilty of hearing someone's cancer complaints, and afterward thinking, and even discussing with others, how that person just doesn't know how good she has it. She's not even getting the "big time" chemo, and she's complaining of this, that and the other side effects. When I was on chemo (10 yrs ago) I lost my hair, did a lot of throwing up, and had to be in bed for a few days ... and here's this person not having any of that and they're complaining.

I admit now that I was very wrong to judge that person in that way (the issue I am referring to took place a couple of years ago.) One really has no idea how badly someone else can be feeling, based on how they look and act, or how you think they should be feeling knowing the treatments they're receiving. Just because someone is going through a different kind of treatment than I did, doesn't give me the right to judge or make comparisons to the side effects I experienced. It's all relative!

I have learned this lesson, because right now I'm on the other side. I'm not receiving the kind of chemo that makes me lose my hair or constantly be nauseated and fatigued, but I AM on chemo, and the two drugs I take DO have their side effects, and there are a lot of them. Many of them have caused me to have to change my lifestyle and daily living activities. This latest round of cancer treatments is taking away, one by one, little parts of my life. Each by itself may not sound so bad. But in combination, it definitely is affecting me.

Such as .... My independence has been affected, as I have trouble using my hands for cooking, cleaning, brushing my teeth, zipping my pants, putting on shoes, tying shoes, etc. If I was still a nurse, I definitely could no longer work. As it is, I can still do some of my work at the Shop (the desk work,) but I certainly can no longer fill orders. It's too painful on my hands. I can no longer run for fitness, earlier because of the bone mets and femur fracture I sustained a while back, but more recently it's because of my feet. They are red and painful and tender, and being on them for long periods of time exacerbates the symptoms. I have intermittent, mild bleeding from my nose, gums and rectum. I am struggling to find a balance between extreme constipation and diarrhea, and am dealing with the discomfort that accompanies each of these maladies. I've had to severely modify my diet due to burning of the lips, mouth, and esophagus. My taste is altered so that I can't taste salt. Everything tastes like it needs salt! Two to four times a month, I get a severe headache with debilitating nausea as a side effect of one of the very strong chemo drugs I'm taking, making me lose a whole day of life each time. My healthy sex life ended over a year ago because of the pain it caused, all due to the anti-hormone drugs I was on for so long. And even though I am now off of anti-hormones (which we hoped would send some life into my insides and make sex less painful,) it is still excruciatingly unbearable, which is just plain sad for a woman of my age with a hot and healthy husband who loves me and wants to be with me... but I guess things could always be worse.

A lot of people ask how I'm doing, and sometimes they really do care and really do want to know, but mostly I just say "Great!" Because overall, I AM doing great. My scans have shown great improvement and this latest treatment regimen is definitely working on the cancer. This is wonderful news, and I am truly thankful for it. I have people say "Well you LOOK great!" And I do, excluding my hands, feet, and purplish-colored lips, that is. I really am thankful that I look great, and that I don't LOOK like a cancer patient... things could always be worse.

There are other people who try to tell me what I should be eating and not eating, what I should be drinking, the supplements I should be taking ... this is supposed to be good for the immune system, that will help keep your energy levels up. "Make sure you eat some salad," I've been told on my way out to eat with my husband. Yea, and perhaps they should be giving me some green tea in my IV infusion instead of the chemo drugs! I think I can have a doggone hamburger if I want one! I've been told that I should be exercising ... one person even saying "Even if it's just 30 minutes, three times a week." EXCUSE ME?! That sounds like the workout schedule of a perfectly healthy woman who is NOT on chemotherapy for stage IV breast cancer! I agree that some exercise is definitely a good thing, for everyone, but I simply haven't had the energy. Plus YOU try to find some good handless, footless ways to exercise! What I interpret these comments as, is that I'm not doing enough to fight my cancer. Or perhaps my diet and exercise habits have somehow caused my cancer. If only I would do all these things, my cancer would go away! Never mind the fact that, as instructed by my oncologist, who works at the best cancer treatment center in the world, I have to poison myself with an oral chemotherapy agent morning and evening, 7 days on, 7 days off for, not just a specified time period -- indefinitely! Every three weeks I go get an infusion of a different poison. Also indefinitely, I might add! Unfortunately with stage IV cancer, there is no light at the end of my tunnel. There is no magical date on the calendar when I will receive my last chemo treatment. When my doctor decides to change my treatment, it will be because the current ones have stopped working and it's time to move on to the next options.

Then I've had the occasional person try to give me "perspective" as a method of dealing with my cancer and side effects. They tell me about so-and-so who has this other (worse) kind of cancer, a husband of a friend of theirs is getting radiation to the brain, and such-and-such relative is having hallucinations from their non-cancer-related disease treatment. I understand that perspective has its place in how one deals with any kind of personal trial. One can almost always find another who is less well off than oneself ... more sick, with a more deadly cancer, that has spread everywhere. It is helpful to look for the positives in your own situation and to know that things could always be worse. I myself use this to cope with my own illness. But the timing and delivery of giving this kind of advice to someone in this kind of situation is something that should be considered. Sometimes, we cancer patients just want to be listened to. If you honestly want to know how your cancer-patient friend is doing, ask and then LISTEN to their response. It's not always appropriate to interject advice about perspective. As I said before, it's all relative, and each individual handles things differently. It always IS appropriate to say "Oh, I'm so sorry you're having to go through all of that" or "Wow, that must be tough." Sometimes while you're trying to give advice, the recipient of your good intentions may be interpreting it as you minimizing what they're going through. That it's not that bad. Not as bad as .... whomever you know or whatever you've gone through. Now that I'm on the receiving end of this kind of advice, I truly have "perspective" on what kind of things to say and not to say.

Let me end by saying that I know that most folks mean well and are not intending to offend. I do try to keep that in mind. But sometimes it gets to me. I am only human and I'm not always able to let things roll off my back. Sometimes I just need to vent, which is definitely what I've accomplished here.

Kim