In a conversation today with my 16 year old daughter, K’Lee, we were discussing this journal. I made some statement about how I tried to keep my posts honest and real except for maybe . . . And K’Lee suggested I include “those things” too. My excuse was this journal was originally posted so my students with their parents could keep up with me while I was out on leave from my classroom. But my online journal grew and has been viewed by thousands and many read these posts because they too have walked this journey, or they’ve just found out they are crossing over from pavement to this rocky and sometimes treacherous road.
This particular post isn’t for “my kids”. It isn’t for anyone’s pity. It is for those who’ve been here and even for those who are about to be, or those that are just curious about the other “real” side of this journey.
Some days I just hurt. Not pain I think I need pain medication to control, but more like the discomfort you feel on day three of P90X or some other form of intense exercise program. Sixteen days after surgery, I’m tired of hurting, and to be honest, I’m also tired of taking pain medication or medication in general. I want to be strong and independent and suffer through it, so I won’t end the day feeling like a wimp or like I have given up. That might sound stupid to some people, but I’ve always been an athlete. Somewhere along the way, we were brainwashed into suck it up, grit your teeth, smile, and drive on. I don’t think it’s a bad thing either, but even the greatest and strongest athletes discover their breaking points. The difference is we also know after we start over, we will be able to do more or go farther before our next breaking point. My pain gets better and then somehow worse and then it becomes discomfort and then just different than any pain I’ve ever felt before. That is what makes it awful!
Take a woman who has been somewhat forced and has somewhat chosen to be independent and take every ounce of independence away from her. It doesn’t take a million dollars worth of research to know how that’s going to turn out. No grown woman who’s been performing a nearly impossible juggling routine we American women now call “life” wants to have it all come to a screeching halt they had NO control over. And when I mean no independence, I mean NONE! Someone had to help me sit up, walk, go to the bathroom, undress/dress me, eat, drink, and everything else! Come on now – this is stupid! So as I began to gain some independence back, the worst thing is to try and take it away from me again. You may see it as helping, I want to scream at you and say, “I’m not a baby! I can do it myself!” It sounds like toddlerhood or being a teenager all over again. Frustrating!
Sleep is a luxury I took for granted. I’ve suffered from insomnia most of my life, but after months of working with doctors and trial and error, I’d finally developed a healthy sleep pattern. It’s gone. I miss it.
On the subject of sleep, it’s uncomfortable. I’m a stomach sleeper. That’s not allowed. In that case, I’d sleep on my side – still not allowed. I’m not a flat on your back, at an angle, in a recliner, or couch, or even a bed surrounded by pillows kind of sleeper. Steroids = insomnia. Pain = insomnia. Discomfort = insomnia. Guess what? Chances are I’m awake when normal people are sleeping even when I wish I was sleeping.
A double mastectomy is the medically polite way of saying breast amputation. I’ve never had Victoria Secret or Hooters kind of boobs, but what I did have was a part of me that I was told from the time I was a developing girl made me a woman and different from a man. They were private and would be a special part of my body. I tried as best as I could to prepare myself for that moment when all the bandages were taken off, and I think I prepared myself well. The fact of the matter is that it didn’t take away the fact that mine were gone! Although reconstruction is already in progress, I didn’t just wake up from surgery with a beautiful pair of photoshopped breasts. The process is slow, painful and more complicated than if I just walked into my local plastic surgeon’s office and laid down my hard earned cash for a perfect pair of boobies to make myself feel better about myself, or so I could look better in certain kinds of clothes. That would have been a cosmetic choice. This is getting rid of something that’s trying to kill me and replacing it with fake ones, so I can mentally handle the entire situation better. Every day I hope my chest won’t hurt as much today as it did yesterday. Then, they add more fluid to stretch my muscles a little more, and I’m back to square one again. It’s a lot like lifting weights. All those tiny muscle tears will develop bigger, stronger muscles, but that doesn’t mean it doesn’t hurt, feels uncomfortable, or tight.
These new, painful, and oddly shaped breast have become overly sensitive to everything that touches them. As much as I wanted that tight ace-like bandage off, I couldn’t wait to find something similar to replace it with. Thankfully, a friend went out of her way and ask questions and told me about a bandeau bra. No seams, no wires, no hooks, no straps, no rubbing, and it’s tight without being too tight. Ahhh…relief after too many days of irritation and discomfort.
When the radiologist told me I had cancer and when the breast surgeon (Dr. Brian) explained the stage, rate, type, and we agreed to a double mastectomy, I was at peace. I felt strong. I held it all together. The moment my oncologist (Dr. Krekow) said I needed chemotherapy, I broke right there in her office and cried. I demanded answers to all my questions typically starting with the word “Why”. Then I broke down again when she told me my hair would fall out after the first chemo treatment. How in the world could my hair be a more painful thing to lose than my breasts? My hair would eventually grow back. My boobs will forever be fake. Why was this such a devastating moment in the grand scheme of things? Why would this be the topic I would wake my husband up for at 2:00 in the morning to cry unconsolably in his arms for over an hour over? The nasty tumor that went from 50,000 cancerous cells to 3.5 million cancerous cells in the span of less than a month was gone along with everything else they could see or find that appeared or seemed cancerous, and here I am crying over hair! Good grief! How vain of a person am I?
My 16 year old daughter didn’t get a new car when she turned 16. I’d already felt the lump by then. My husband had already been laid off from his job. She won’t get one for Christmas. Her car money has been paying my medical bills. She breaks down today because her friends have cars. When will she get hers? I feel instantly guilty knowing her car money has been spent on cancer. That was never part of the plan. That doesn’t seem fair to a 40 year old mom much less a 16 year old teenage girl. No, a car isn’t a necessity for a 16 year old, but it doesn’t take the guilt, the disappointment, or the hurt away.
My next surgery is scheduled for the same night both my kids have performances at school. My son will be performing in the Christmas choir concert. My daughter has a solo to sing during her improv show. Mommy, who has tried to never miss the BIG stuff, will be in surgery having a port inserted in her chest for chemo. My husband, Chelsye, and Pablo will all have to make hard choices that day on who will be where. I’ll just cry. It just doesn’t seem fair.
I walked into a wig shop and tried on fake hair trying to imagine how it would look on my bald head. We tried hats, turbons, and scarves. No husband should have to do this with his wife. No 16 year old daughter should have to go through this process with her mommy. And no mom should have to help her daughter find head coverings because she knows all too well how traumatic this will all be once my hair is really gone. We found the humor in it. We laughed. I walked out to the car thankful I had done that without crying as tears formed in my eyes.
After hearing “this might be cancer”, how many days will it be before you get to live a day without having to hear or say the word “cancer”? I fear we aren’t even close to that day yet. I hate that word!
The truth of the matter is every storm has its ugly, evil, and destructive pieces. K’Lee is right. The darkness and brokenness are an important part of the story too. Jesus’s journey to the cross wasn’t a walk in the park. He was whipped, spat on, flogged, mocked, had a wreath of thorns shoved into his head, carried his own cross, was nailed to it, hung, suffered, and died all for my sins and yours. Perhaps, this darkest moment in Jesus’s historical journey is one of the most important parts of the story. How insignificant it might have all seemed without the pain and suffering. How much more glorious his resurrection was because of it all!
The rainbow might not seem as beautiful if the storm wasn’t so ugly.