Anne SG and the Big C

This quote struck me tonight because I have been thinking about my own losses and I suppose I’d like to justify my dwelling on them a bit. Frequently when feeling sorry for myself, I kick myself (mentally) in the rear and remember the losses in Africa to AIDS, or perhaps the innocence lost to child-soldiers in Sierra Leone. I feel so small grieving for my losses….but I do like Mark Twain and like to think that perhaps it’s ok to feel a bit sorry for myself , or at least a bit sad, now and then.

I’ve lost sensation. My breasts-that-aren’t-really-breasts have no feeling in them. It’s the most indescribable experience to not feel skin on one’s own self. I keep thinking about the loss of sensation, and the loss of “real” working breasts and what other amputees must go through. I have heard that some people experience phantom pain or sensations where arms or legs once were. I, on the other hand, feel nothing where skin is. I have a lot of pain still in my sides and surrounding the numbness, and under the skin where I guess I’m still healing. But on the surface–nothing. An absence in presence. Remarkable.

And to really reveal my shallow side, I’m dreading most of all the loss of my hair. Pathetic, I know. There are children starving all over the world and here I am dreading not the nausea or weariness of chemo, but going bald. And I already have that great Santa hat waiting for me in case the FL “cold” chills my scalp. I have considered getting a head tattoo.

A couple of people have mentioned to me my comments about my new “A” sized figure, and I had to laugh–because it certainly isn’t as though I’m upset about it. My joke all along is that I have found a fiendishly clever (if roundabout and labor-intensive) way to get my insurance company to pay for the reduction I always wanted. I’m thrilled to be a normal size–I might not feel anything, but I’m going to get to wear strappy dresses and tank tops at last! I can purchase bras purely based on prettiness!

Then I realize, my kids will probably never remember the “old” me, and might be a little upset at how they look when they grow up. Imagine if I went all the way and got butt implants and a new nose!

So, today my surgeon called and reviewed my path report with me (her resident had called before). The way she said it, the new information she gave me, scared me. There wasn’t really anything new–just the way she conveyed the gravity of my illness. It was the first time, really.

She told me first that it was a darn good thing that I had the full mastectomy, since the 4 tumors were in 4 different quadrants (there only being 4, of course), all of them infiltrating ductal carcinoma. And the news–the 4 tumors were all connected by a noninvasive cancer, in situ carcinoma. That’s what really threw me. These cancers–this nasty, evil disease–was actually 2 kinds of cancer working together.

She said she was utterly shocked that the cancer had not spread into my lymph nodes. The way she said it made me realize the gravity of my situation and the good luck I had in getting this out when I did. She was so overjoyed, it seemed, that it had not.

Also, given the “extent” of my cancer, I will have to have chemo. I guess I knew that but again, hearing the expert say so weighted me down. After I shared the news with Jay and my mom, my first words were, “I am just glad I’m alive.” And I am. I have to live like I am.

We’ve been trying to get things back to normal here. The girls have had a really hard time with everything; Elise is utterly disguted by my drains (“mommy, when are you going to get those, um, tube thingys out?) and Arden is tired of her routine’s being up-ended. I’m trying not to wear myself out, and can’t even drive yet, but I do want things to get as close to “normal” as possible. But it’s not normal. My body is disfigured and scarred and I’m still in a lot of pain. Pretty soon I’ll be bald. Ewww. Arden did tell me that I can wear her Mickey Mouse-ear Santa hat when I go bald, though. Thank goodness for that.

OK, no, I didn’t choose this quote as a reference to my new A-cup sized figure, no matter how appropriate it is.

 I got a package from Wireless catalog in the mail this week with a plaque that had this quote on it.  It was a Christmas present from my mom and it had gotten backordered–and it showed up this week, just days before my mother herself is scheduled to show up.  And I love this plaque because it’s true.

What has held me up through this experience is the little things–the gestures of thought I have received–each one touching my heart and strengthening me when I’m feeling horrible.  I have received cards in the mail, offers of help, flowers. . . each one unexpected and overwhelming in its simple generosity.  My two “managerial caretakers” as I like to call them–my friends (I don’t name them here simply because I don’t know if they’d want their names all over the internet) who have rounded up all the offers of help and put them into action–are amazing.  When I arrived home from the hospital , groggy, ill, and exhausted, meals began to show up.  Each afternoon my children arrived home, and dinner came with them.  My uber-organized girlfriends had set up a calendar online and anyone who wished to prepare a dinner for my family in January could sign up.

The calendar filled overnight.  Overwhelming.

Each of these meals required effort on the part of those who sent them; maybe an hour, maybe a half hour, maybe more, I don’t know.  But that’s not really important.  Each meal came served with a huge helping of simple human kindness that overwhelmed me.  It was simply a bonus that the food was incredibly good and abundant.  We have eaten amazing salads. . . pasta to die for . . . brownies. . . oh, the brownies!! My picky eater tried everything and has several new foods! Each night has been like a little mini-Christmas present.

All these small gestures–the meals, the cards, the well-wishes, the prayers, the You-tube video, the thoughts sent out to the universe, are really tremendous.  The friends who organized everything, who worked as a phone tree to get messages out when I was in the hospital–gosh, I just cannot express how valuable, how meaningful they are to me.

I think when I look back on this time in my life I will not recall the pain or the fear. I’ll remember all those people who held me up and reassured me that people are good and life is precious and worth fighting for.

I’d been warned by several people in the hospital not to rush getting well, not to take on too much. Just Tuesday I was telling the plastic surgeon’s nurse how great I felt, and she told me that there would be good days, and there would be bad. Well, today is bad. It is one of the days that my scars and pain and the tubing running out of my sides are more Frankenstein than signs of healing. I got ready to shower this morning and wanted to cry. Where was my optimism? My hope? My strength? Instead of looking ahead, I was looking at a piece of damaged goods, a body scarred and sick and carved up. Damaged.

But not ruined. It’s been a tough couple of days because the drains in my side prevent me from sleeping any other way than on my back. So there’s not much sleep, and when I do sleep, I end up with back and neck pain. The pain meds cause nausea. Whine, whine, whine. I treated my horrible mood after my shower to a lunch of water (my conscience speaking) and a slice of chocolate cheesecake (my self-pity). I’m getting tired of getting well. I’m not a patient person. Not by a long shot. My kids, especially Arden, are not managing all that well, and would be really happy if I could start taking them to school again and just get well enough to get life back to normal.

Serenity now. Breathe. One day at a time. Well, I’m trying. I still insist on looking at the glass as half full, and ready to be filled a bit more. This disease is an opportunity for me to reexamine life and redetermine what I want to do with it. Today I might just wallow a bit, eat some salty carbs, whine, and sigh dramatically.

I am home from the hospital, having had my double mastectomy.  It was an ordeal, to say the least.  The surgery itself went quite well apparently and when I awoke, everyone was beaming and telling me how well everything went.  The pathology report just came in today (Tuesday) and it says that I had 4 invasive cancers ranging in size from 1/2 cm to 4cm in size.  The best part is that although those tumors were invasive, they had not yet managed to invade my lymph nodes.  So, long story short, the news was as good as it could be!

The day before the surgery was grueling to say the least, and the day of the surgery was a lesson in patience since I had to wait, starving, all day to go in. I remember pretty much nothing at all about Friday, though Jay tells me I promised him a 47″ 1080p LCD tv, among other things.  Having my dad, his dad, and him around was sort of fun–not a threesome I usually see, but  nice to see them there all in support of me and of each other.  My godparents and godsister stopped by on their way from Ft. Lauderdale to Charlotte and it was wonderful to see them, too.

Saturday was pretty brutal, as the morphine’s side effects overpowered me, though I really did love having that magic button to take away what was some pretty awful pain.  But later that day they put me on Percoset and that helped a lot–by that evening I could stomach some food and crack a few jokes. I even forced poor Jay and Dad into playing Yahtzee with me.  We came home Sunday afternoon and I’ve been doing really well since then.  The pain is certainly there and I’m moving slowly, but I am thrilled to be past the surgery and back home with my kids.

As I change my clothes each morning and prepare to shower I look at my battle scarred chest, which is almost unreal to me.  I force myself to look because it is, for now, the reality of who I am.  Eventually there will be a full reconstruction and I’ll be relatively normal again soon.  But I don’t want to forget this time and everything I’m experiencing, and what the experience is carving on my soul.  The scars–these horrible huge gashes–and the drains attached to my side–make me feel less like an invalid than a bionic woman. I have been around more space-age looking machines lately than I ever imagined existed in the world.  And what miracles they can perform in everyday lives today!

Some people have remarked on how strong, how courageous I have been through this ordeal. I don’t FEEL either strong or courageous. It’s just my “game face” as I call it. Or, I like to say, I just left my terrified face at home in my closet. It isn’t very pretty anyway.

Today we spent the whole day at the Mayo having a billion tests. I had blood drawn, I was injected for lymph node mapping (OUCH OUCH OUCH), I met with the surgeons, I had a physical to see if I’m fit for anesthesia…all that fun stuff. Surgery is tomorrow (Thurs.) at 3:30. I’m not to eat after midnight tonight at all before the surgery. I think I might spend the entire day whining. How can I not eat for all that time? AGH!!!!

I cannot properly express my deepest gratitude to everyone who has offered words of support and help and caring. I honestly feel like I don’t HAVE to be brave–I am being held up by all the prayers and love and well-wishes of so many people. I know my children are being well-taken care of at home, so I don’t have to panic about their well being. I am just so lucky, so blessed. How dare I tremble in fear with such an amazing support system in place? What should I be afraid of, really? Ok, yes, pain. I am afraid of pain. But today the plastic surgeon gave me a magic piece of paper that I traded in at the pharmacy for 30 mother’s-little-helpers called Percoset. Ahhhh, this is the life.

I have just finished reading  My Sister’s Keeper.  If you have read it, you know it is about the monumental impact that a deadly cancer has on a family–not just the child who suffers from it, but on her parents and siblings as well.  It moved me to tears for so many reasons, but also made me realize that I have not stopped to think of my parents during my diagnosis and treatment.  As a mother, I can relate to how utterly unspeakable it is to even think of losing a child.  My children–gosh–all I can say is that I am so grateful that it is I who has cancer, not them.

I don’t know how my parents feel about this because I haven’t really asked them, and I’m sure they don’t offer to tell me because they don’t want to upset me.  But reading the book reminds me that I am not just a mother, but am also a child.  Their child.  And it must grieve them to know I am ill.

For Christmas, my brother and his wife sent me a DVD–on it was, among other things, some old home movies from the 70s that I guess they had transferred to DVD.  I sat down casually to watch, and then became entranced.  There on the video were my siblings and me as children in matching Christmas pajamas–my infant sister still bald, my brother with his blond mop and me, bouncing around like a crazy person on my Hoppity-Horse.  I saw my mother with long hair for the first time in memory, and realized how much I really do look like her.  And I saw my three grandparents who are now gone, and my heart ached and ached and ached.  They were so much a part of my childhood, and I still  miss them.  And my grandmother–the one who died eventually of breast cancer–there she was, beside my grandfather in his John Wayne-esque days of bluff and bluster.

We pass so much along in our families.  Today Arden was being especially helpful to her sisters and I was feeling crummy.  I talked to her and told her how proud I am of her, and how I hoped she would be a good help to Gammy next week when I’m gone having surgery.  Later, I chastised myself for putting that burden on her.  She’s certainly entitled to be a little kid, not Mom’s Helper all the time.  She’s so responsible, so serious. I wonder if some day she will look back on this time as The Year Mom Had Cancer.  I hope not….but I don’t know if it’s avoidable.

Being a family is something of a land mine sometimes.  And sometimes, it’s everything good in the world.   Being a mother means questioning every thought, every decision, every choice, all while being forced to grow up and make those choices thoughtfully even while second guessing myself.  It means wondering every day if I am setting a good example, if I am laughing enough with them, if I am leaving terrible psychic scars on their spirits.

Perhaps for graduation from high school I will offer them psychotherapy in lieu of college.

Or should I say 36-AA day? Sorry, gallows humor. I couldn’t help my self. I got the call at last that my surgery has been scheduled. January 10th is the first surgery, to be prefaced by some as-yet unnamed pre-op procedures. I can’t seem to figure out why I’m not more conflicted about what’s about to happen. I suppose I don’t, in all reality, have a choice.

Living with cancer is like having a ghost on your shoulder–I told one friend that I felt like the Grim Reaper was in my backseat everywhere I went, grinning ghoulishly and reminding me of my mortality. “You will die” he keeps saying-without-saying, with that grin. Of course, we all will. That’s not the point. But having it in your sight, seated next to you silently, perched on your shoulder all the time, well, that’s a whole other thing. I don’t mean to sound melodramatic, gosh how I HATE melodrama! That is just the way it feels.

The other experience I’ve had is to feel like a ghost. I see people and immediately know if they “KNOW” my diagnosis. Some people look terrified, like they’ve seen a ghost and as a result I feel only semi-solid, like I’m being perceived rather than actually being seen. Others greet me as if nothing is wrong. Others offer a hug, a word of support. None of it is normal, all things considered, and I’m just deeply grateful that everyone has been well intentioned. Heck, *I* don’t know what to say about it all!

My sister and I recently found out that as children we both always felt a weird premonition that we’d die young. Now, I don’t know if that is a common thing with kids–I’d half to check my handy DSM-IV. Maybe it was a rationalization for my hard-living 20s. But I talked with her about this recently and told her that I wondered if maybe we just sensed some sort of major life-altering event coming at this age–that we knew we’d be gravely ill. After all, kids tend to know things, to pick them up. and NO one, I mean no one, in my family talked about the Big C in front of us, despite its prevalence in the family, but of course they talked amongst themselves. I wonder if we just picked up this knowledge and stored it away. Either way, I’m convinced now that I won’t die, that I will come out of this okay, that I have a tremendous opportunity ahead of me. I am, oddly enough, very optimistic about my future. Gosh, I’m way too crabby to die!

Now, about next week, I’m less confident. It’s not the surgery that scares me, it’s being lily-livered about dealing with daily bodily issues. Being bald. Tubes and drains in my body. Chemo. Ewwww. Can I just go to sleep till it’s all done in June?