Milestones & Mother's Day

This week marked three months since my cancer diagnosis and one month since my mastectomy. I've had somewhere around one thousand different thoughts and feelings fly through my head and heart since then -- sadness, loss, thanks, joy, relief, anger, guilt, gratefulness, loneliness, fear, hope, and more. A lot of great things -- birthdays, vacations, holidays, etc. -- have happened since then and when I look back over the last three months I see a lot of joy and blessings. There's also been plenty of pain, both physical and emotional. Going from just a normal healthy person to having this cancer label has been a trip I didn't anticipate. Aside from the pain of surgery and recovery I have never once felt sick because of cancer. Mine hadn't spread. It hadn't interfered with any other body parts to cause problems or symptoms. It had to go though, so I had both breasts removed and I'm still recovering and having pain from that. Breast reconstruction hurts. The expanders are hard and painful. The chest muscles have been cut, sutured, and are struggling to work right again. Nerves are trying to wake up and regrow. I'm spacing out my expansions to two weeks apart so that I can have a "good" week after I've had a fill and that's helped. 

Technically the cancer should all be out of my body, as far as we know. I've begun taking Tamoxifen, an effective and proven drug that dramatically reduces the chance of recurrence. So far I've had no side effects. Because I have a history of blood clots I'm also taking a blood thinner in an attempt to avoid clotting while on Tamoxifen. I've been going to the cancer center for blood work twice a week while we get my clotting level stabilized. In a few months, whenever we decide to do it, I'll have my expanders replaced with silicone implants. If all goes as we hope, a few follow-up appointments here and there for med monitoring (for the next ten years) and screening exams will be all that's left of my breast cancer experience. Well, that and the scars and the flesh that's supposed to resemble new breasts. :/ I feel guilty that I avoided chemo. I never had to get sick and worry about bigger things like infections from a compromised immune system. I didn't lose my hair or have a port. It's an odd mixture of relief and guilt.

My biggest fear when I was first diagnosed was that I would leave my kids without a mom, so I'm beyond grateful that I'm not leaving them anytime soon. I don't know that there's any greater gift I could have gotten this Mother's Day. My mom's been here for almost six weeks. I have not touched a single load of laundry or dishes in the last month. She's cleaned, watched and entertained kids, welcomed visitors, and just "been here" all without once complaining. I know it's not easy seeing her daughter go through this but she has been a rock. It would've been much more difficult without her. My other rock? BHE. Well, he's my rock all the time, regardless of cancer, but he's been unwavering though I never would have expected any different. Getting to celebrate them and motherhood to our sweet kids was extra special yesterday. 

This will be my last post before I take a little break from this blog. Life is busy right now with the end of school and beginning of summer, and while I still have this recovery/reconstruction/med business to bother with I have so much more fun, excitement, and joy to experience. I feel like the rest of life has played second fiddle to cancer for the last three months but now while I have a little break in this deal I need to participate in "normal" while I have the chance. Out of necessity, I've focused on myself for most of the last three months, missing milestones and big things in the lives of friends and family. I've been selfish, warranted or not, while others took care of us. I need to get back to caring for others now. I'll only have a few months of that before I have my second surgery so I'll squeeze it in while I can. We can't thank everyone enough for all of the prayers, calls, texts, messages, visits, food, favors, etc. that have gotten us through this time. Although it's not quite over and there may be unknowns to come, we are so comforted by our network of friends and family who have shown us incredible love and care through this. I don't know how we would've done it without you. Thank you!

Out of my Hands

Last night I couldn't fall asleep. I had done some yard work and my muscles were mad, my mind was wandering, and I couldn't find my Kindle (CB had "relocated" it). I wanted to stay in bed, so I just messed around on my phone, making the rounds on Facebook, Instagram, Twitter, etc. But around 1 am, my mind wandered a little too far and I started browsing You Tube for surgery footage -- mastectomies, reconstruction, etc. I found some good stuff, opting for the edited 5-10 min versions with the audio turned down as not to wake BHE sound asleep next to me. This stuff doesn't bother me. It's fascinating and it helps me make sense of things.

I used to be a control freak. There's a history behind it (as always) and maybe I'll write about that another time. Sometimes I look back at how I treated people in the past and cringe over the priority I placed on completely unimportant details. Having towels in the right place, the right brand of drinks at a party, the right look on my kids, and on and on. I credit BHE with saving me from that. He's the opposite and has modeled a better way of living to me over the past twelve years of our marriage. Certain events & situations will prompt that side of me to come roaring back though. 

I would have expected this whole cancer thing to send my need for control into overdrive, but so much is inherently out of my hands that I've been forced to just let most of it go. I've definitely had my moments -- and KAS, who gave me her cell number, can probably attest to that. Over the past few weeks though I've had this nagging feeling that I can't shake -- total loss of control, the unknown of both the crucial and the mundane. It's the surgery. The time under anesthesia. The loss of body parts. I cannot even begin to reconcile it. I realized last night that it's why I keep reading that damn surgery report. My brain is trying to piece together a cohesive picture of that day but it can't. I want a video. An account of what was done and said. Who did what, who said what. I want to see my intubation, the node biopsy, the mastectomy prep, the first cut, the final cut, my tissue placed aside and sent to pathology. I want to see and hear my time in recovery. BHE was there with me and I asked him what things were like during that time but he didn't say much. I'm sure it wasn't easy for him and that's not how he operates anyway. I just don't remember anything and it's unsettling. I want to remember the trip from recovery to the hospital floor. I want to remember my friends who came by, my sisters and my mom. I don't know why it's all bothering me so much.  

The reality is that there is no account of that time other than the surgery report I already have. There's not a video. There's no one in that place that would recount anything other than what they've done and said for any other patient. Why? Because I was just their first surgery on that one Tuesday a few weeks ago. They'd been there and done that and that's why they're good at what they do. I'm not saying that the docs, nurses, techs, etc. are uncaring. I've already written about what I do remember about that day and they were caring, just as I'd expect they are with every patient. At some point my brain will wrap around the truth that the surgery saved my life. The pathology report attests to it. There was more cancer than we knew about -- DCIS (ductal carcinoma in situ) -- cancer that hadn't yet spread outside of the ducts. It eventually would have. It would have reached the lymph nodes. It would have spread to other parts of my body. This surgery had to happen and I'm grateful that I found the mass when I did. It saved me from what could have killed me later. Rationally that all makes sense. I really shouldn't need to know anything more than that.

I suppose that these feelings are all normal. Processing emotional trauma is a difficult thing. Friends keep asking how I'm doing and they mean it. They really want to know and I so appreciate that. I just don't know how to answer. Logically, I know I'm fine. As far as we know, my body is healthy and in several months I'll feel more like myself again. My regular trips to the cancer center will taper off and I'll feel less like a patient. Those are all great things. I guess my answer to "How are you?" is that I'm doing fairly well...considering the muscle tightness and pain, considering the image in the mirror, considering my lingering fatigue and restless emotions.

I've been constantly posting and tagging and checking in on Facebook. It looks like we're living it up over here. I've seen three new movies in the last week. We've been eating out at our favorite places and taking advantage of the sunshine and fun spring activities. Cancer recovery looks great on my Facebook timeline. We're doing those things because it's easy for me to walk into a movie theater, sit in the dark, and zone out for a few hours. When we're eating at our favorite places I forget for awhile. When I post pictures of our fun on Facebook it gives me something to go back and look at and think about when the darkness creeps in at 2 am and I can't sleep. I read the comments of friends and family and it encourages me. It reminds me of how lucky I am that my cancer was caught early, that surgery options were good, that the medicines are effective, that all I have are a few temporary aches and pains, and to stay positive that the cancer won't return. So I guess that's how I am. I'm still emotional, sometimes moody, and ready for the time when the pain will be gone and I won't think about this all the time.

How This Could Have Gone

In the fall of 2009 I noticed some weirdness with Pancho. There was some leakage (technically "discharge" but that word creeps me out) so I mentioned it to my doc and she sent me for a mammogram just to be safe. During this time we were living in Charlottesville, VA -- 1,500 miles from "home" in Texas -- while BHE did his final round of med education. I was thirty one years old and felt like I had been given a free pass to observe the mysterious world of adult womanhood. I'm a sociologist by training and any chance to observe new and different things is exciting to me. In fact, I seriously considered focusing on the sociology of medicine for my master's degree. I ended up specializing in urban sociology and statistics instead but I never lost interest in medicine. So, walking into the Breast Care Center at the University of Virginia Hospital was like a field study in gendered medical treatment. I'd never been to such a place -- I felt nervous, excited, and guilty all at the same time. 

Here were women in various stages of breast cancer testing, diagnosis, treatment, and there I was just hanging out gawking because I casually mentioned some leakage to my PCP. The atmosphere was obviously designed to be calming and spa-like, as if any of us were tricked into feeling like we were actually at a spa. Although, given what I know now, I've come to appreciate the effort at that center. We each got a private little room so we could change into our pink half-robes. Then we had to sit in another waiting area just staring at each other, wondering what each of us were "in for." I was the youngest one there by far and I could feel each of the older women looking at me like I had just run over her puppy. I knew they were looking at me and thinking, "Poor girl. She's way too young to have breast cancer. What a shame." And I was thinking in response, "These poor women think I have breast cancer. I should tell them that I just have a little leakage. I'm basically here for the intellectual stimulation -- a field study." As different women were called back for imaging they looked at me and said things like "God bless" and "stay strong." I thought that was really kind but not needed. When it was my turn to go back I first met with the docs and told them why I was there. They asked questions like what color, is it clear, when did I notice it, etc. Then they took a look and made their own observations. They said there were traces of blood in the fluid. I know now that I should have had all kinds of bells and sirens going off in my head -- blood in the leakage is a big flashing warning sign. But, you know, I was just there for the experience. Next I had a mammogram. It was uncomfortable but not a big deal. It was my first one and I expected it to be horrible. I was pleasantly surprised that it wasn't. I went back to the exam room and the docs were there again. They said that the leakage could be caused by a benign mass called an intraductal papilloma in the milk duct. Or it could be worse. It could be cancer. Uh oh...they used the "C" word. It's cool. They didn't know that I was just there to observe. I knew it was nothing to worry about. They said my mammogram looked clear but they wanted to do a test called a ductogram where they would inject dye into the milk duct to see if there was anything there. I said that was fine (more observation!) and scheduled the procedure. They asked if there was any way that I could be pregnant and I said that I wasn't but that we'd been trying. They couldn't do the test if I was pregnant so on the way home that day I grabbed at test from Walgreens. The whole pregnancy deal was a sensitive subject for BHE and me since our first two pregnancies were miscarriages. We'd finally had our sweet boy CB and were trying for #2 at this point. It had been six months already -- six negative tests -- so I just expected the same for this new one. I was actually a little annoyed that I even had to go through the whole negative pregnancy test thing again before they would do the ductogram. I went home and absentmindedly did the test, playing with CB while waiting the three minutes for the result. BHE was in the next room on the phone talking work stuff with a friend when I checked the test. It was positive! I was stunned. I walked over to BHE, showed him the test, then sat on the stairs and waited for his shock to join mine. We still waited for an ultrasound confirmation before we actually believed it, but once we saw that strong little heartbeat we accepted the fact that I was actually pregnant. I called the breast center and told them the news and they cancelled the ductogram with instructions to return after I had the baby and was done nursing *if* the leakage was still there. That next spring we were blessed with our sweet baby girl, SJ, and all the drama with the breast stuff was just a distant memory. The leakage never did return so I just filed that away in my mental, "Huh, that was weird..." folder. 

Looking back now, that leakage could very well have been the beginning of this cancer, not that we'll ever know. Had SJ not been already forming, had I not cancelled the ductogram, had we not just chalked that whole breast ordeal up to nothing, our life today might be much different. Had they found what they suspected, I might have ended up with this same surgery, the same meds, and the inability to pursue a second child until much later (if ever). It would have been devastating in so many ways. We were across the country from our family, BHE was working all the time, and we were scraping by on a med fellow's salary. I can't imagine dealing with this back then. 

Another thing for the "weird" folder...last Fall BHE was asked to go on a trip to El Salvador to help provide fresh water wells. He would travel the first week in June, one month from now. Usually I would wholeheartedly endorse such a trip. It's exactly the kind of thing that I would get passionate about. This time though I had huge, unexplained reservations. BHE and I have both always had a sincere passion for helping people in impoverished areas and we've done smaller trips and projects like this together before. This time though, as soon as BHE told me about the opportunity, I shot it down. BHE was taken aback. I was even surprised by my response. I couldn't articulate why I felt he shouldn't go but I just knew that he shouldn't. My feelings were in complete opposition to our values and priorities but I still refused to back down. BHE was the first one to say something the week after my surgery. "Do you remember how adamant you were that I not go to El Salvador and we didn't know why?" We looked at each other with watery eyes. Was that God protecting us? Preparing us for what was coming? Was it Him saying, "This isn't your trip. Not now. You'll need to be home"? My answer: I have no idea. It really feels like that though. 

My point in all of this is that even in the face of cancer, God is near. He's using this to change me. I've gained understanding of things that I didn't have before. I've gained new connections, new relationships, new appreciations. I've learned that it's okay to be vulnerable and to let people help. I've learned how to better help others when they face similar things. And I've learned that there are others going through much, much worse than this. If this is the toughest thing we ever face it will be a pretty easy life.