Two Weeks Out

It's now been two weeks (and three days) since my surgery. On Tuesday I had my first expansion -- what a load of weirdness that is. My chest muscles hated that. They also hate when I take a shower. And when I do pretty much anything else. By the end of the day I'm ready to pop some ibuprofen and ice the mangled area that will one day look something like breasts.

I was fortunate to have my drains removed nine days post-op. That was fantastic! The drain sites on my left side felt like someone was constantly stabbing me. Since having them removed I've been able to stop taking my pain meds and muscle relaxers and have been cleared to drive again. Freedom! Although, I still don't have a ton of energy and I'm still pretty sore so my outings aren't very exciting -- maybe lunch, a quick errand, and a doctor's appointment.

This whole thing is still so foreign to me. I try and try to wrap my brain around it but I fail. I've been pouring over the final pathology and surgery reports, reading and rereading them, as if some light bulb of acceptance will eventually go off and I'll find peace with all of it. So that pink file folder with my name on it sits on my nightstand, waiting for my next study session, the next time I'm grasping for understanding. I read the parts about the type of anesthesia used, the sentinel node biopsy, the dissection of my chest, the muscles, the wound beds, the transfer of my breasts to pathology, the dissection of them, the preparation for testing...and it goes on and on. And now I sound insane. I promise I'm not, at least not totally. We're a medically & scientifically oriented household. Methods, procedures, numbers, percentages -- they make sense to me. I'm just having a hard time reconciling that side of my brain with the emotions that come with being the patient. This pink file folder -- it has my name on it, just like the one that holds my initial pathology report, the one that started this ordeal, the one with the paper that says "invasive ductal carcinoma." Just a small lump of cells...

Logically, I know I'm fortunate to not need chemo. But there's still one last and very long hurdle. For the next 10 years I'll take a drug called Tamoxifen. My type of cancer is estrogen and progesterone receptor positive, which means that the tumor feeds off of those hormones. Tamoxifen works to block the hormones and keep the cancer cells from dividing & multiplying. Sounds great and it is. It's a very effective cancer drug with proven results. The possible side effects can be nasty though -- hot flashes (common), blood clots (uncommon), endometrial & uterine cancers (uncommon), among others. Because I have a history of clotting (massive DVT in 2002), my oncologist has decided to have me take Coumadin (common blood thinner) while on Tamoxifen. I'll likely be a frequent flyer for labs at the cancer center while we try to stabilize my clotting level (INR), especially since Tamoxifen is known to increase the effect of Coumadin. 

You may be wondering why I'm taking a drug to prevent the recurrence of breast cancer if I no longer have breasts. Good question. It's impossible to remove every bit of breast tissue. As long as even one cell exists that cell could multiply and mutate. Cancer could return in the remaining chest tissue and/or lymph nodes or can return as tumors in different areas of the body. The numbers are in my favor given my tumor/cancer profile and lack of cancer in the lymph nodes BUT taking Tamoxifen lowers my risk even further. Being a young women with breast cancer carries a lot of unknowns since most of the research is on older women and focuses on a 5-10 year survival rate. A 10-year survival is pretty good for a 65-year-old. Not great for a 36-year-old. So, Tamoxifen it is.

People keep asking how I'm doing. Physically, I'm healing really well, one benefit of being younger. I'm getting my energy back, my pain isn't too bad, and I'm returning to some normal activities. My arms are still a little weak since my muscles are weird with the reconstruction in progress. Emotionally, I'm not even sure what I am. Some days I stay busy and don't have time to think about anything. Other days I'm on the verge of tears for hours at a time over nothing specific. Some days I feel guilty for even worrying about this little stage 1 diagnosis, but other days I'm so sickened by this interruption and how it's changed my body. I know I'll feel "normal" again but I know it won't be soon.

Just a Tuesday

I really don't know where to start. It's been eight days since my bilateral mastectomy and I've been composing posts in my head, unable to make my arms or brain work well enough to type anything. It still blows my mind that this all started with a group of errant cells no bigger than the size of a pea. 

The night before my surgery we went swimming and just had fun. CB stayed home from Cub Scouts so we could have a family night. We wanted to keep everyone close, not knowing when I'd feel well enough to do that again. We put the kids to bed that night and ran through the same script we'd been running through the past few days: "Mommy's having surgery and will be in the hospital for a day or two but if she feels good enough you can visit." SJ had already taken to being quite literal about the ordeal, telling friends and family that "They're going to cut Mommy's breasts off" and using pretty direct hand motions to demonstrate. CB was more emotional, sad that I had to leave the next morning before he got up for school. I promised that I would sneak in and give him a kiss and leave a note before I left. He was okay with that consolation. 

After the kids were in bed, BHE and I made an ice cream run in his Jeep. He'd already been off work for a few days and had taken to easing the stress with binge-watching "The West Wing", trimming trees, and rigging a system to remove the Jeep's hardtop. So we took a drive in the open Jeep and had some time alone. It was an odd feeling -- trying to prepare for either a mastectomy or a node biopsy & scratched mastectomy followed by months of chemo (see previous post for explanation). I'm usually not comfortable with that level of uncertainty but we'd been functioning at that level for two months so I'd gotten used to it.  

That night I organized my hospital bag and stash of things I'd need within arms reach post-surgery. I had plenty of button-up pajamas & shirts, wound care gear, reading material, etc. I didn't think I'd get much sleep that night but I had been so busy getting things ready in the days before that I just crashed. My alarm went off at 4:45 and I got in the shower. I had already done my break-down-crying-in-the-shower bit the previous morning so I had that out of the way. I got dressed and gathered my things, remembering to kiss the kids and leave them notes like I had promised. Then BHE, my twin sister, and I drove to Outpatient Surgery at the hospital. My report time was 5:30 and there were plenty of others already there waiting to be called back to pre-op. It's an odd feeling in the waiting room. Who knows why each of us were there? Knee replacement? Heart cath? Nose job? It's just a cattle call. There was a cute, bubbly, young nurse taking a few people back. I was hoping she would call me back, my rationale being that I'd be less likely to lose it and ugly cry if I had a nice nurse. I wasn't that lucky though. The nurse who called me back wasn't amused to be up at 5:30. She was brisk and unaffected by this thing I was about to do. She did this every morning. To her it was just a Tuesday. To me it was everything but it seems that she either forgot or just didn't really care.

We ran through the usual mandatory questions before she gave me a gown and socks and instructed me how to wash with these cloths covered in antibacterial soap that I was supposed to cover my body with and let air dry. I asked if I could wear my own socks (cute ones with grips I found online) and she very abruptly said, "No. If you wear socks they have to be our socks." I understand the need to control things in a hospital setting, and I understand (having just been in the waiting room) that not everyone shows up showered and wearing clean socks. But it's not as if these over sized raggedy brown socks that the hospital provides are sterile. I think I started cussing while in the bathroom wiping that soap all over and then dressing in the brown and green hospital gown and brown socks. It reminded me of my dad. In fact, I was doing all of this on his exact birthday. He's been gone for four years and I saw him wear this exact thing during his hospital stays. I'm almost glad he's not here to see his daughter go through this.

This would be a great thing for the local breast cancer groups to get in on -- providing mastectomy patients with pretty gowns and cute socks to wear into surgery. After all, we're already being stripped of so much of our womanhood. You'd be surprised at how much better just wearing a feminine gown and socks would have made me feel pre- and post-surgery. It sounds ridiculous but I'm serious.

Stepping off my soap box...
After I was changed, two older nurses came in to ask more questions and put in my IV. They were complete angels! I wish I remembered their names so I could thank them. Even though I knew it was just a Tuesday to them, as it was for the first nurse, they were gentle and calming and understanding that this was a huge deal for me. They apologized for rushing me through the pre-op process because they usually like to sit and visit a little longer. Although I didn't mind the lack of waiting I loved that they said that. A surgery resident came by to run through the final consent and made sure we were all on the same page. She had a New York accent so she was immediately in my good graces because she seemed like a kick a** surgeon in training. 
Soon after my IV was in they wheeled my bed down a few long hallways to the pre-op staging area -- the big room with bays separated by curtains where anesthesia comes to say hi and run through all the questions again.
At some point I started crying. I'm sure the people in the other little bays wondered what my deal was. I would have. It wasn't long before my twin started crying too. She kept me stocked with tissues and held her head close to mine. We weren't supposed to be there dealing with that, not until we were old and gray together. Certainly not at thirty six. It was all surreal. BHE stood on the other side of her while the nurse anesthetist ran through more questions. Kick A** Surgeon (KAS) came by and was wearing a black hoodie with pink writing. I don't know why I even remember that. It occurs to me now that she probably sneaked in and kissed her own kids before they woke just as I had done with mine. And there we were, meeting up at 7:30 so she could get to cutting. What a crazy job. I asked her if it was too late to cancel the surgery. I was joking but it didn't really help to lighten the mood. There just wasn't much to laugh at. 
The anesthesiologist came by soon after and she was so gentle and caring. She "got" it. The nurse said to me, "You're upset already?" and the anesthesiologist responded, "You would be too if you were about to have this surgery." Yes! Someone gets it! I was so thankful for that. It was time to go to the OR so I hugged and kissed BHE and Twin and I was on my way. I think I had stopped crying but everything is kind of a blur from that point. I remember being wheeled into the OR where there was a flurry of people setting up. It didn't look like it does on "Grey's Anatomy." It seemed much smaller and crowded, but what do I know? I was on some powerful meds by that point. The last thing I remember was KAS holding my hand and I said, "I like your hat." It was a floral (or paisley?) print scrub hat. And then I woke up mid-afternoon in my hospital room in the Family Care Unit (postpartum floor). I don't remember being in recovery for several hours, nor the trip to my room, nor much else until the next morning. I remember Twin and my younger sister being there and I remember being in pain. They said that a few friends and my mom came by but I was out of it. I do remember thinking that the kids shouldn't come see me like this and I guess everyone else was thinking the same thing because they didn't bring the them by. At some point I realized that all of this meant that my lymph nodes were clear of cancer. Logically I knew I should be happy about that but it was overshadowed by the pain representing the fact that my breasts were gone.

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I'm already composing an essay for the hospital survey on how they made me wear this nasty, ugly brown gown and socks to my surgery. I'm willing to head up a program to make this easier on women. We should all have a cute gown to wear for this. And I'm mad that they won't let me wear my cute grippy socks to the OR. It's not like these ugly brown ones are sterile or anything. Inconsiderate.

Pink Sand and Taxidermy

Less than 36 hours. That's how much time I have left with my body as a whole. When I was a child I used to play with this hourglass phone timer that my Grammy kept by her phone. It was in a black four-inch resin rectangle and the sand inside was pink. I thought it was the coolest thing and I always liked how I could manipulate the flow of sand by titling it different ways. I wish I could tilt this -- slow the sand, make it stop.

I distinctly remember several years ago, having heard something on the news about breast cancer, thinking "I'd just cut them off and be done with it. They're just boobs. I've never been that into mine anyway. Who cares?" What an idiot. What a big, colossal idiot. The things we think and say. I'll never understand them. Things like, "Well now you'll get to pick your size." Or, "But now they'll be nice and perky!" I get it. I've made jokes. Lots and lots of jokes. It's how I cope. I've always been that way. Here's the deal though -- cancer, like anything else, belongs to the person who has it. The cancer person can make all the jokes he or she wants to make. But very few others are allowed to go there. Maybe a close friend and/or relative. Maybe. And I don't even know what to think or say if those comments weren't meant as jokes. Actually, I probably do. Let me take a stab at it...

Taxidermy. That's what reconstruction after a mastectomy is. That's probably one of the most useful things Kick A** Surgeon (KAS) said to me in those first few appointments. It was the perfect word to describe what's about to transpire. This isn't a free boob job. It's not something to celebrate, rejoice in, or even remotely feel excited about. Not for me. That's not even close to how I feel about it. For me it will be an attempt to gain back some sense of normalcy. To hide brutal physical and heal deep emotional scars. This isn't augmentation. At thirty-six years old I'm losing the parts that fed my babies, the parts that help identify me as a woman, the parts that are pretty damn entertaining during sex. So you'll have to excuse me if I'm not excited about giving that up for the rest of my life in exchange for a set of numb-but-perky substitutes. They will feel like nothing. They'll serve to fill out my shirts and that's about it. I'd rather keep my own, thanks.

This sounds angry. It is. I'm angry, overwhelmed, and full of dread. I'm not nervous, worried, or "ready to get it over with." I know what's ahead and I don't want it. Yes, I believe I'll be fine, but that doesn't make me accepting of the experience. "God will use this." Okay. That's fine. Even better if He does. At least it won't be all for nothing. Still, I don't have to like it. "It could be worse." Absolutely, without a doubt. I would choose this over a long list of much worse things. It's still what it is and I don't have to like it. "Find peace with it." Okay. Check back with me in ten years when I'm off the hormone blockers. Maybe I'll have some peace then.

Maybe I should apologize for the tone of this post, but I'm not going to. I promised that I would be real, not just for readers, but so I will remember how the countdown feels. How the last few days and hours before surgery start to tighten their grip. I'll remember when it's unfortunately another woman's turn and I hope I can be there like so many of you have been there for me. Care packages, cards, calls, messages, babysitting, prayers...they've kept me sane. You've been praying for peace and comfort and I feel it, even on a night like tonight when all I can picture is that pink sand funneling down and running out. Thank you for being here, for being willing to walk with me in an uncomfortable time. It's awkward and messy and no fun at all. I've been blessed beyond measure to have you in it.