Saturday, July 11, 2009

stupid side effects ... still

I am ranty about side effects!

I finished chemo a year and 8 months ago. I expected all of the physical chemo baggage to be gone by now. But I'm still having chemo boobs, and I'm pretty sure that some of my memory issues and struggles with speaking are related to chemo brain.

When I asked my oncologist about chemo boobs, he told me to ask my regular doctor. I made an appointment with a new doctor (my old one is no longer available, which is super-sad) and asked who in the practice would be best equipped to answer questions about chemotherapy side effects. After being on hold for a while, the receptionist came back and gave me an appointment but stressed that they might need to refer me.

Who are they going to refer me to? Is there a branch of medicine that deals with long term side effects of chemo? (If yes, why wasn't I pointed in their direction a long time ago???) If not (which I assume is the right answer), where are they going to send me? To an oncologist? I have one already.

It will be interesting.

I have a laundry list of questions for her. I want to ask about chemo boobs and chemo brain, and when they're going to flippin' GO AWAY. I had some weird breathing troubles at the end of my triathlon and again once when I was training at the gym; I'd like to know what might cause that to happen. My heart rate is pretty high when I exercise; I want to know if that's a problem (and if/how I can ever make that better). I have some plantar warts on my right foot and need a referral to a podiatrist who can make them go away. (They were removed once, about 4 years ago...) I want to know about vitamins and supplements and which ones she might recommend as being the most effective/safest.

I have a lot of questions :) I hope she has at least *some* answers.

The whole thing is ... frustrating. The oncologist's job, as far as I can tell, is to make sure I don't die of cancer. Great! He did that. I'm exceptionally grateful to him for that. But there are other things going on that are impeding my quality of life. Who deals with those?

The local chapter of i[2]y is having a meeting next week on Tuesday regarding fertility issues. I am planning to go, as chemo boobs would be tied into hormones and therefore fertility. Maybe it'll be good.

I'm realizing, through reading comments of people on Facebook, that my way of looking at my cancer seems to be different than many other young adult cancer survivors. There is a conversation going on about people who are depressed when they finish treatment. The structure of treatments is gone, the friends who are nurses and other patients are suddenly not there on a regular basis any more. I get that. but DUDE! You're ALIVE! Celebrate! But that's just me, apparently.

I wonder if this is what made the difference for me: I never thought of cancer or chemo or how my life was at the time as "the new normal." It was always just an aberration. A long, pain-in-the-ass-kinda-scary-sometimes-terrifying inconvenience. And so when it was over, I was joyful! It was like I'd been sitting at this damned light forever and it finally turned green.

Is my life "back to normal"? In most ways, yes. I am working, I am exercising, I am over-extending my schedule, I am not sleeping enough, I am doing all the things I was doing before this ordeal. Is my psyche the same? Nope. It changes you. It has to. I don't think you can come up against any life-threatening experience and not leave a changed person. It hasn't changed me in the clich├ęd way that people asked about. But if nothing else, it's always there. It's not part of my daily routine. It's not part of my regular consciousness. But it's definitely there.

Going back to the thing on Facebook. The consensus in the small sample of people is that the oncologist should be taking care of their patients' mental health needs through this process. I completely disagree. Therapists who are trained to deal with cancer patients and survivors should absolutely be made available by the oncologist (or his/her office/nurses), but I don't think it's the oncologist's job. That's not what they're trained in.

I would like to help people who need help in dealing with cancer as a diagnosis, or cancer as a part of their history, or anything in between. I'm not really sure how I best can do that. If you have suggestions, please post them.

I'll let you know what the doc says on Monday. I am also going to see a dermatologist on Wednesday. Hopefully, there will be no news on that front.

The saga continues...

Also, I just have to mention that while my hair started growing back in October '07 (before chemo ended!), and I have been getting regular hair cuts for the last year, I still occasionally get comments on having "all that hair!" Bets on when the last comment will be made? I would have lost that bet already...

5 comments:

Anonymous said...

I thought for a long time after I read your post as to whether I should comment or not. But considering you asked for comments on how to help people dealing with cancer, my guess would be that you want to hear from me.
For the most part, I agree with your post. But what I would say is that if you want to counsel survivors at some point, you may want to consider that you ARE living "the new normal." The new normal isn't really about calling chemo and treatment your new life. It is just when you return to your life after chemo and pick up as much of your old routine as possible can and realize that the experience has changed you. Obviously you understand that, as you stated that you could not help but be effected. Some people can do much less after treatment due to surgeries or pain or whatever, but they may still want as much of their old life as they can possible get, so that's what they go after, and that's their new normal. Your new normal is where you are right now.
Regarding whether oncologists should take care of patients' emotional needs, I think the people on fb are referring to psychosocial oncology training of as a part of courses required in medical school, which is the new frontier in oncology. You can talk to a therapist all you want about how the chemo is destroying your quality of life, but your therapist can't lower the dosage. Only your oncologist can see the emotional toll that your treatment is making upon you and alter it in order to both get you through the treatment with some quality of life and also eradicate the cancer. Major depression is a weight worse than death, and many chemotherapies cause depression as one of their many side effects. I understand that the people on FB are stating that oncologists need to take responsibility for this portion of cancer treatment, too.
I'm just giving my very humble (and possibly fallible) opinion here, but before you begin your very giving search to help people dealing with a cancer dx, I think that these viewpoints may need to be considered.

Heat said...

Thanks for your comment :)

My impression from what I read was that people had trouble dealing with treatments ending, which I why I was referring to that part of the process as "the new normal." It didn't even get as far as physical restrictions as a result — it spoke of having a schedule and being friends with nurses.

As far as chemo destroying your quality of life... Unless you're on chemo as part of a maintenance plan (which I know many people are), I think it's a given that it's going to affect your quality of life, but that's the gamble we all take: I am going to sacrifice the next 6 months/8 months/year with the belief that it will give me more time to live afterwards. I trust that my oncologist was giving me enough poison to kill my cancer but no more. Surely, if a lower dosage would be effective, I would be having that already, no?

I have had major depression (though not at all related to cancer), so I understand that weight. I also know that being sick half the time instead of most of the time isn't going to lift it. I think patients should be told ahead of time that this is a possible side effect so they can make an informed choice, and that if they say, "This isn't worth it" along the way that it be honored, but if the depression is physically caused by the chemo, what is the oncologist going to do? Just not give it? I would rather be depressed than dead, because depression is fix-able. But again, that's just my opinion.

I'm not planning to make any career changes any time soon, so no worries there :)

Thoughts?

Anonymous said...

Here's what I think: you put your opinion about other cancer survivors out there without trying to see how they feel or where they are in their journey, judging them for how they feel, and then end the comment in, "but that's just my opinion." My point was, if you want to help other survivors, then start right here and right now on your blog by trying to understand them instead of judging them, and look at other points of view. We know it's your opinion. It's your blog. But it's not helping any of us. But maybe that's what this blog is for: for you to express yourself. And if so, well done. Otherwise, if you want to reach out and help others through this blog, realize where you could better yourself. No, if a lower dosage would be effective, you wouldn't necessarily be having that already. I know this from personal experience as well as from working with hundreds of other cancer patients. And yes, I understand that YOU consider depression fixable, but I've worked with people who have committed suicide, trying to eradicate the cancer and have become overwhelmed by depression in the midst. So yes, depression can be physically caused by the chemo. Just because you don't know about it doesn't mean it doesn't occur. Do some research before you make statements like that. And yes, the oncologist is supposed to just not give it. You consider depression better than dead, because depression is fix-able. But depression is not always fixable. It seems like you have no problem stating all these opinions when, in fact, you have no information on it and what others are going through.
So, again, I feel like you are not doing any survivors any good with your judgments when you are not understanding what they are going through. I think and I2Y meeting would be really good for you to just sit back and listen and try to connect with others instead of assuming that the way you feel is the only way to feel.

Heat said...

OK.

The blog was created to keep friends and family informed about what was going on while I was going through treatment. Others have found it, and some have found it helpful. Its purpose is to not help people, though I am delighted that it has had that effect, and I get correspondence from people thanking me and/or asking for help. At this point, the purpose is for me to continue to have an outlet through which to write about my experience with cancer. Its intention is to be therapeutic for me. If it yields the same for others, all the better, but that's not my goal, and my intended audience is the same as it was on Day 1.

I didn't say depression can't happen, or that I didn't know it can happen. I said depression is treatable, which a vast majority of the time, it is. I do have training in psychology and a degree in counseling and understand to a degree possible causes and treatments thereof.

If a patient considers the depression to be worse than the cancer, then the patient should make the decision to end chemo. Sometimes the cure is worse than the disease (and certainly depression is not alone on the list), but we all have that choice to make (unless we're minors).

I have been to several i[2]y meetings. Thanks for the suggestion.

Finally, I stated quite clearly that "my way of looking at my cancer seems to be different than many other young adult cancer survivors" in my post, which, I believe, is the opposite of "assuming that the way you feel is the only way to feel."

Michelle said...

Wow - I was going to comment, but I think, after reading the comments, that I'll hold back. Still have opinions, but I'll keep those on my own blog. :-) Heat - talk with you soon! And, I agree with you, for what it's worth. You want another avenue to potential help? Other than i2y? Email me. I've got loads of ways you can help.