Tuesday, September 9, 2014

Phoenix Rising

Beginning a post can be such a challenge--especially after a long hiatus. But as this post is all about beginnings, I suppose I'll just launch in and let the pieces fall together as they will. I was talking to a good friend of mine the other day--she also happens to be a doctor who followed my cancer journey closely--and she expressed something that no one else has dared say to me before. "That cancer could have killed you, you know." Her comment caught me off guard, but...I do know.

I think in a broad sense, we know cancer is lethal and that it kills people. But for the most part, breast cancer is pretty treatable and, while the treatment is a nasty business, the survival rate is very high. Lots of women get breast cancer--only a few don't make it through to the other side of treatment. But let's be serious--how in the world did a tumor of 9 cm with involved lymph nodes (one of which became a decent tumor in its own right of about 2.5 cm) stay contained in one general area? And then how in the world did it disappear almost without a trace? I really don't know. I've heard of two other cases where the women were not as fortunate. They were around the same age as me and with the same type of cancer and a similar severity, and yet for both of them, it spread to their brains. One has already passed away and the other is projected to live only a few months. Yeah. I could have died.

I'm back in France now, ironically separated from Roby again for a few more days while he works short-term for the MTC in Madrid, and trying to make sense of what just happened this past year. It's funny to come back here alone--almost as if nothing happened and I'm picking up where I left off, still single and waiting for the next phase of life. Everything inside of me feels different and yet I'm surrounded by things that haven't changed. It makes me laugh a little bit to see how confused some people are when they see me at church again--it's like they know something is different and that I was gone for a while, but they can't seem to put all the pieces together. Maybe they are thinking, "Wasn't she the one who got sick? She looks so...normal." In large part, I think their confusion is related to my wig. I'm not quite ready to stop wearing it yet, and now that my eyebrows and eyelashes are back in full vigor, my skin is looking quite healthy, and I've stopped retaining water, all the dead ringers for "recovering cancer patient" are carefully concealed. What none of them knows is that in so many ways, my cancer journey isn't over yet.

You see, what they don't really tell you when you get started is that once the trips to the chemo room are done and the radiation appointments are over and the surgical scars are healing up, recovery still takes a long time. I let doctors beat up my body for nine months, so I suppose it shouldn't be a surprise that I have a lot of healing to do. And while that process can be very frustrating at times--particularly in terms of fatigue--it's also completely fascinating. I don't think I ever fully appreciated the legend of the phoenix until I learned what it means to live through dozens of small deaths and rebirths. I hope you'll indulge me, then, while I share with you some of the things I've learned as my body comes back to life.

Me on the last day of chemo--my
eyebrows were penciled on...
The Truth About Hair Loss
Not many people talk about what it means to lose your hair during chemotherapy. Everyone knows that many cancer patients go bald, but few realize that hair loss means more than losing the hair on your head--you lose all of your hair. As in, normal humans have hair all over their bodies except on the soles of their feet and the palms of their hands. Imagine all of that hair being gone. Many women may think, "Hey, that sounds great!" But I'll tell you--it's really not as lovely as you might suppose. Being hairless somehow makes you colder, and losing eyebrows and eyelashes is a major bummer. I suppose one nice point is that I didn't have to shave my legs or armpits for a while and I have learned that I never wish to wax or shave my arms. :) I don't have any pictures of myself as I really looked--bald with no eyebrows or eyelashes--so I can't show you the contrast, but it was a big thing. And having it all grow back is like seeing myself heal every day. I stopped drawing on my eyebrows, I watched in wonder as my eyelashes came back longer than I remembered, and I had moments of surprise when I started feeling soft, white hairs on my face (I had to remind myself it was normal). And, of course, I watched my head anxiously every day as my hair turned from pale, patchy fuzz to kitten fur and now finally to a very pixieish, wanna-be-curly inch-long head covering. That's why I'm hanging on to the wig for a while longer...I'm not ready for short hair. I never wanted it before, and having it forced on me hasn't helped me warm up to the idea.

Behold--the chemo line! Just a little
farther to go...
The Death of Fingernails
I honestly had no idea that chemotherapy would trash my fingernails and toenails. Or at any rate, I didn't know exactly what it would do to them and how long it would take for them to return to normal. I always had strong, healthy nails, and while I usually kept them relatively short, I never noticed how many things I did with those nails--separating key rings, pulling off sticky price tags, prying off the cover on my phone, scratching caked-on food off dishes, etc. When my nails grew out to the point where the chemo had affected them, they started folding in half any time I tried to use them. They broke and ripped and snagged at the slightest provocation, and it was fairly painful. As my nails have started growing more, I can actually see a line of healthy to unhealthy--a physical landmark of when I stopped chemo--and I'm waiting anxiously for that line to get farther down on my nail.

Journey Through Fatigue
As I already mentioned, I still struggle quite a bit with fatigue and need more sleep than the average adult. It's been hard for me to realize that I just can't do everything that I was accustomed to doing--I've been in France for two weeks and yet I still haven't gotten up the energy to visit some of my favorite places and take up my old habit of long walks after school. Most of the time, I go home absolutely dead tired around 4:00 and don't stir from my apartment the rest of the day. I think having Roby gone certainly doesn't help, but the lifestyle I have to follow now is not at all what I was used to. I've started taking fifteen minute walks in hopes of gradually increasing my stamina, but it's still going to take some time...

Emotional Messes and Chemo Brain
When I started my treatment, I think I essentially stuck a lid on my fears and emotions, put my head down, and barreled through it without allowing myself to think too frequently on how hard it all was. When everything was finally over, however, I started having panic attacks in the middle of the night and had the strangest feeling that I was back at the beginning of my cancer treatment. Somehow, the lid popped off my emotions and I realized that I still had to feel them in order to work through them. It was a crucial time to have a wonderful husband at my side. I still have some anger and other latent emotions to work through, but I am feeling more and more like myself every day.

Somewhat linked to the emotional traumas is the dreaded chemo brain. In a nutshell, chemo kills cells and that includes some of the ones in your brain. From the very beginning I noticed memory loss issues that I'd never experienced before and now that I've completed all treatments, I still struggle to mentally connect things as quickly as I used to. In other weird developments, there was a week or two (not that long ago, I might add) that I started having strange episodes of not knowing who I was. It would happen as I would lay down to sleep, and similar to a dream, my brain would start telling me stories. Unlike a dream, however, I wasn't really asleep yet and my brain thought the story (usually related to something fictional I've read somewhere) was real. I would feel very confused for a few minutes and not know where I was or even who I was. It was terrifying. The only explanation I can come up with (and it's a hopeful one) is that my brain--similar to a live wire--is shooting out signals a little randomly in an attempt to find a good connection. After those two weeks, it stopped happening--and I have noticed that my memory has improved since then.

Here I am today!
There are many other things that I'm discovering on a daily basis--how to break up scar tissue being the biggest issue at present--but the bottom line is that I'm healing. I don't know how I got to where I am, but I'm alive and healthier than most people would expect. Sometimes, I feel like I must have cheated...and I guess I really did--cheated death, I mean.