The cancer club

Have you noticed my posts have become less frequent? Sorry to the new subscribers who have signed up for the blog. I don’t wish to disappoint you. However, you can usually safely assume that in my case, no news is good news. The less I have to say/write about cancer,  the more I am focusing on other things. Important things. Like getting caught up on Season 3 of Scandal. Very important. (P.S. no spoilers, please. Seriously.)

I recently attended a support group of sorts. It wasn’t technically labeled a support group, but it was a group of cancer patients, in a room, talking about issues surrounding a cancer diagnosis. It was kind of a lecture with some discussion thrown in here and there.

I didn’t attend one support group while I was undergoing chemo and radiation. I know these groups are really helpful to many people. For me, my support group was my family, my friends, and the many wonderful people I met through writing this blog. I’m fortunate that I had a large network of people I could talk to and who offered to listen.

I decided to attend this session because the topic at hand interested me and I figured it might be a good experiment, and might even help me in this whole “healing” and “recovery” process.

To be honest, I didn’t get a whole lot out of the session. Everyone sitting in the circle was more than twice my age, and although we might have this cancer thing in common, that’s not really enough to make me feel connected to a bunch of senior citizens. (No offence to the many seniors who read this blog. I love old people and would love to sit around with you and play card games and yell at punk teenagers from the porch and do other old-people-things.) Being around a bunch of old people with cancer just reminds me of my crappy luck to have cancer in my 20’s and how much I just don’t belong and don’t want to be part of this particular group. The Cancer Club.

As much as I can empathize with anyone who has cancer regardless of age, when I listened to this group talk about their experiences and feelings, I couldn’t help but think, You have lived long enough to have kids, and grandkids and a career. You’ve had an entire life that I have not lived. If someone told me I could have waited until I was 70 to get stuck with cancer, I would be jumping up and down and doing cartwheels. It’s almost like I am jealous of old people with cancer. Because as much as it is still awful, an old person with cancer just isn’t the same as a young person with cancer. It just ain’t.

Besides that, the “teachings” in the session also felt very “Intro to Dealing With Cancer/Coping 101” kind of stuff. And as you might have noticed, I’m not exactly a cancer novice anymore. I suppose I was looking for something with a little more depth. A new way of thinking, or a different way of approaching things. The ideas and advice given were not new to me. It was all stuff I’ve heard before. However, it seemed that a lot of the folks in the group were really engaged and likely learned something new. I assume most of them were/are a lot less likely to use the internet to search for answers or to connect with others, so there is a much stronger need to have these types of group sessions. I think I was mostly alone in my feelings of I don’t belong here/get me out of here/why aren’t any snacks being offered to me right now/when can I go home and eat a snack.

I’m happy the other patients could get this kind of much needed support. But unfortunately, for me, in a strange way, I just ended up feeling more alone, as if I had accidentally walked into the wrong room. A foreigner in a strange country. But really, that’s what it is to have cancer in your 20’s. It shouldn’t feel normal, because it is not normal. Young people shouldn’t be sick. They shouldn’t have to be part of a peer group where the majority of members have white hair (or no hair… although that part, I can relate to a bit more). But whether I like it or not, and whether I want to join them in their circle, or not — I do have this link to them, this bond that ties us all together. Regardless of age, we’re all scared, and we all want to escape the awful realities of a cancer diagnosis. And we’re all searching for a way to make sense of it all.

I am still searching.

In the meantime, though, maybe it’s time to teach myself Canasta. If you can’t beat ’em, join ’em.

So what happens now?

It has been awhile since I’ve given everyone any type of real update, and since that was the initial point of this blog, I figure I should probably do that. You might be thinking, she’s done the scary part of chemo, we’ll never hear from her again! But don’t you fear, there is much more to share and the journey continues, one day at a time.

In terms of my surgery recovery, it has gone quite well. I always feel pretty satisfied when the doctors examine me and say that everything looks great, as if I had anything to do with it. I still suffer from body pains, mostly in my legs, which is assumed to be a residual effect from chemo. I worry that the pain will always be there. The price paid for living? Maybe.

I’ve been going for long walks, pushing through the aches, and I feel a bit stronger each day. I’ve also gotten pretty good at knowing my limits and being very blunt when I realize I need to go home and rest. After spending so much time alone, cooped up inside all winter, it can be a bit exhausting and overwhelming to be in social situations for long periods of time. That being said, I have loved spending some quality time with my friends the past couple weeks, catching up on their lives, and talking about non-cancery things. I have such good friends. I am lucky.

Hair update: There is not much to report on that front. I look like a newborn baby. Or a balding old man. Take your pick. There definitely has been some growth, but it’s very thin and sparse, and my scalp is still very much visible. I have read that the drug infusions I still receive can slow the hair growth process. As someone who used to cry because my hair was too thick, I now find myself using fancy volumizing shampoo that promises plump looking strands. The irony is not lost on me.

So, next steps. I have been hesitant to start really thinking or talking about the next phase of cancerland, because I really just want it to be over at this point. Now that I am feeling better and feel a bit of my “old self” creeping back in, I want to just ignore all the cancer stuff, erase it from my memory, pretend it never happened. I want to move on and get my life back. But my road is a long one, and it ain’t over till the fat lady sings. (Someone better hire a fat lady to sing to me when it’s actually over.)

In a few weeks, I will begin my radiation treatment. Many months ago, when I was writing about my frustration over having to make impossible decisions, this was one of them. To radiate, or not to radiate. That was the question. And I decided, since I’m having so much fun with this cancer stuff, why not throw that into the mix as well. Just kidding. The thought process was not nearly that simple, though I wish it was. The situation is incredibly complicated and I’m not going to describe all the particulars, for fear of unleashing the anxiety I am trying to squash surrounding the subject. The bottom line is, radiation is on the horizon.

Side effects may include the following: Skin burn. Blistering. Redness. Fatigue. Cosmetic defects. Superpowers.

These folks look so happy. Radiation must be a riot!
These folks look so happy. Radiation must be a riot!

This week, I will be undergoing my simulation where they will map out my treatment zone. This will involve getting several small, permanent tattoos on my chest. Never thought breast cancer would be the reason I would get a tattoo. But there you have it.

I also will soon be starting my hormone therapy, since my cancer is fueled by certain hormones. This will be in the form of a pill, which will be quite a nice change from the way I’ve become accustomed to receiving my drugs. There are all sorts of unpleasant side effects possible from this little pill. The list is long. The most common ones are: Hot flashes. Weight gain. Hair thinning. So I will be a fat, menopausal, bald man. It’s just all so glamorous, I can hardly stand it.

So, that’s essentially where I’m at. Mentally, I am in a bit of a strange place. I am feeling happy, and hopeful, and enjoying every second of my life, with a deep appreciation for every minute that I am allowed to feel good. Every step I can take, every hour that I’m not ill in bed, feels like some sort of small miracle. Yet it is during these happy moments that I am also filled with anxiety and fear. The fear of not knowing how long it will last, or what the future holds. Or what it doesn’t hold. The fear of my lifetime of happy moments being much shorter than everyone else’s lifetime of happy moments. I feel this need to hang on to every second. To pause time. To soak up everything and everyone, for fear it will all be taken away from me.

This is what it is to have had cancer. To have danced with death. To have lived through hell. This is what I’m stuck with now. The good, and the bad. So what do I do? I go on.

Life goes on.

Playing with my nephew. Happy moments.
Playing with my nephew. Happy moments.

Surgical tales, volume II

It has been a few days since my surgery, and I’m happy to report that I made it through. Thanks to those who have written to me. I’ve been a bit slow on responding but I appreciate your concern and warm wishes. Thanks to Katie S. for that sweet hospital gown, and Tiffany for the nice tea, and Maytal for the lasagnas and banana bread (which made the hubs very happy as well), and the Rock-it Promo team for all the fun products and DVDs, and everyone else who has sent cards and nice things. Thank you!

The surgery went well, from what I can tell. I didn’t get to actually speak to my surgeon after I woke up, but I assume if something had gone terribly wrong, I would have been informed. I don’t remember too much, because the anesthetic tends to do strange things to your memory, which is probably for the best. I do recall crying like a baby when a nurse started my IV through my wrist. I’m not sure why she chose my wrist, but she poked me several times and the pain was way more severe than I expected. I was in the middle of talking to a surgical fellow, when I realized I was in pain. So I did what any normal adult woman would do, and I pulled the blanket over my head and sobbed. Lately I have realized that my hospital crying sessions are about a 50/50 mix of emotional and physical pain. The instant my brain receives the signal that I am again in pain, however small or fleeting it may be, I am overcome with the realization of how much my body has been attacked and how much I have gone through since finding that lump, and the sheer absurdity of the entire thing. The tears come more from exhaustion than from anything else. I am tired of the pain, I am tired of feeling like some sort of botched science experiment. The tears are just inevitable at this point, and I let them flow freely, as they wish.

I also remember the mask being lowered onto my face, which I do not enjoy, as I am highly claustrophobic. Upon realizing this, the kind anesthesiologist did his drug magic and gave me something to knock me out before the real knock out. I made a comment about how ugly the ceiling was and how there should be something more pleasant to stare at while you wait to lose consciousness, and then that’s the last I remember. Lights out.

I was not in the hospital very long this time around. I wanted to go home that evening, and I believe I said to the nurse, “Get me the eff out of this place.” So she got the approval for me to be discharged and I didn’t have to sleep in the hospital and hear the chemo machines beep all night. A sound which now triggers a queasy feeling inside whenever I hear it.

I’ve been doing well at home. As people had told me, the recovery for this surgery is definitely much easier than the first, which I’m very happy about. I was only on the heavy drugs for a couple days, and now the pain is tolerable with no drugs, as long as I don’t move around too much. I have my stupid surgical drains, which I hope to get removed by my home care nurse in the next couple days. If you have no idea what drains are, consider yourself lucky. Don’t google it. It’s about as gross as it sounds.

The weather finally seems to be getting a bit nicer outside. I went for a walk today. And by a walk, I mean a few steps out my door and then back. But I got to feel the sun for a bit, which was nice. It’s days like these that it’s best for me to stay away from social media, where everyone is making grand proclamations about their love of springtime and all the fun things they’re doing today. It’s hard to relate to everyone else when you have tubes hanging out of your body. Right now, I am most looking forward to getting clearance to take a bath. You don’t realize how wonderful something like taking a simple shower or bath is, until that privilege is taken away from you. The little things.

I don’t have a current photo to post because I am not feeling particularly photo-friendly at the moment. But posts that are all text are a bit boring, so I’ll leave you with this old photo of me. At some department store, in Paris, laughing over something that probably wasn’t all that funny. I hope to be doing this again sometime in the future.