January 7, 2016
The week after the big pow-wow with my medical team at the Radin Breast Center and the reveal to all my family and friends, I was scheduled to meet with my plastic surgeon. To be honest, I was more than a little nervous to meet him. A couple of the doctors we had met with told us he was a true perfectionist and even an 'artist' at his job. That was good. They also told us not to be put off by his direct, fairly impersonal and cold demeanor. I heard that again from a couple of former patients of his. I went to the internet for more research before my appointment. A couple of reviews declared him outright mean, and even said he had made them cry. That was not so good. I don't want to be made to cry about a situation I already want to cry about! I went to the website of his clinic. They have 'before' and 'after' pictures posted up there (no faces, in case you were wondering--just pre- and post-reconstruction close-ups). As I looked through them, I actually began to realize that if reconstruction was in my future, it wasn't going to be as disfiguring as I might have thought. I asked Doug if he would want to look at the photos, or if that might be too off-putting for him. He said he wasn't worried about being put-off. We looked at the photos together and honestly, were both relieved. The man's reputation as an artist appeared to be well-earned. I told Doug I hoped his reputation for lack of bedside manner wasn't equally accurate. Since Doug was going with me, he assured me there would be no way he was going to allow someone to upset me or make me cry. If he wasn't the right guy for us, we'd demand to be seen by someone else.
At my appointment, I was so nervous I was sick to my stomach--the first time in all of this that I had really been nervous, except when I had to tell the kids. But to be honest, I have no idea how so many people felt the need to forewarn us. He was direct, certainly, but he was compassionate, thorough, asked several times if I had any questions, and told me all of my options, as well as his recommendation for the path he thought was the best course of action. Every subsequent visit with him has been the same, as a matter of fact. Perhaps he adds an extra layer of compassion for cancer patients. Doug thinks that it's possible that because my 6'2" husband accompanies me to all my appointments, that might have something to do with it. He also says that people deal with their diagnoses in a wide variety of ways, and that certainly can color their perceptions, which could definitely explain the reviews I read online. When we met him, I wasn't angry, or in shock, or in denial. I just needed to know what we needed to do. In any case, I am grateful that he is my plastic surgeon, and I have found him to be quite personable, patient, and thorough.
In our meeting, one of the possible treatments he talked about would be to complete the mastectomy, perform the reduction on the other side, and do reconstruction all at the same time. He advised against that. A typical simple (Again, a misnomer. Try having one--it's not that simple!) total mastectomy would have me under anesthesia for 2.5-3 hours. Trying to take on everything all at once would mean a stretch of closer to 9 hours under anesthesia, which of course elevates the risk of complication. Being out for that long was honestly pretty scary to me, and the doctor himself said he much preferred taking it on in stages. Not only would the surgery be shorter, but the recovery would be much less painful. Less painful is good. Three shorter instances of moderate pain is definitely more appealing to me than one long stint of lots of pain in multiple parts of my body simultaneously. The game plan then: mastectomy, with a skin expander to stretch the remaining skin over the course of the next few months, then a reduction and lift on the other side about three months after the initial surgery, and then three or four months after that, another surgery to replace the temporary skin expander with an implant and finalize the reconstruction to look like the 'new and improved' healthy one. Finally, sometime after that, I'd have the option of having the areola and nipple tattooed on the reconstructed breast, since that would be removed during the initial surgery. Huh. Add that to the list of things I never thought I'd have: first, a plastic surgeon, then an implant--and a tattoo! Welcome to your new reality, Donna! Having the plan, though--knowing what would happen going forth, was a huge relief.
I was told to call the breast surgeon's office as soon as I was done at the plastic surgeon's office that day, so that everyone could coordinate schedules and get me on the hospital's calendar. I called as soon as I got into my car in the plastic surgeon's parking lot. I needed to let them know there were some big dates they just couldn't schedule on--two of my children have November birthdays, and my husband has a December birthday. I desperately wanted to avoid having to ruin one of their birthdays by having them worry about me coming out of surgery on those days. I also had a Fresno County Educator awards ceremony at which I was being honored that was coming up. Vain as it may sound, I really didn't want to miss out on that, either. As it turned out, the doctors had not waited for me to call to set my date--the hospital calendar was booking up fast, and cancer patients don't wait until the end of the line. They want to get me in as soon as possible. I never even got to tell them my 'please avoid these dates', but they managed not to hit any of them anyway. They told me we were set for December 4th.
The next step was to sit down with my Learning Director and my principal (and then the folks at Human Resources) to plan the logistics of leaving my classroom. We have a wonderful retired English teacher in our district (a fellow breast cancer survivor, I discovered), who was willing to take on a long term sub position for me. I had been told I would be out anywhere from 4-8 weeks, and though I was tempted to take the minimum time off, I knew that wasn't the smartest thing. I wanted to give my body a chance to really recover. The end of the semester would be 7 weeks out from my surgery. We all agreed it would make the most sense to let my sub finish out the semester (with my lesson plans), and then I would come back to start fresh at the beginning of the second semester. A week before Thanksgiving vacation, I told my students that I would be leaving them shortly after our return from the break and would be gone for several weeks. I knew they would ask why--a reasonable question--and I debated what to tell them. My initial thought was that it would be too much information, perhaps too personal, to tell them I would be having surgery for breast cancer. (I teach high school seniors. Even if I just said I was going out for surgery, I knew they would ask about the nature of the surgery, and they did.) Ultimately, I decided that if I was going out for knee surgery, or kidney surgery, or even brain cancer, I wouldn't feel sheepish about being honest with them about it. Why should breast cancer be any different just because it had the word 'breast' in the explanation? So I was honest with them, and they were so sweet and compassionate, and some of them even told me stories of their moms or aunts who were survivors. Many of them said they'd miss me, were hoping to hear updates during my recovery, and would be praying for me. Before I left I got two huge Get Well cards signed my several of my students. (Reason #3982 that I love my job, by the way. I teach some pretty great human beings.)
The Friday we got out for Thanksgiving vacation was my awards ceremony. My sister Lisa had already been planning for months to come, but the next week was Thanksgiving, and the following Friday was the day of my surgery. Lisa lives 4 or 5 hours away from me (depending on how many bathroom breaks you need), and traveling up here three weeks in a row seemed excessive. I tried to tell her I didn't expect her to come all of those times--it would be too much. She wouldn't hear of it. "Of course I'm coming. It's not even a question!" My sister Laura, who lives almost the same distance, was also planning to make the same trip three weeks in a row. Although I felt bad that they were going out of their way like that, I knew I'd do exactly the same thing.
The morning after the awards ceremony, my sisters and I had lunch with my friend Mo, and they shared with me that they had been conspiring to get meals taken care of for my family for the weeks following my surgery. There's a website I had never heard of called "Take Them A Meal" that is designed exactly for this purpose--to organize friends and family by asking them to sign up for a specific date to bring dinner to a family in need due to surgery, mourning, or recent birth in the family, just to take that burden off the family. I had to ask them to switch the subject because I was so touched it brought tears to my eyes. They shared the link on Facebook and I had friends and even a couple of people I didn't even know sign up to take care of us for the entire month of December. I protested and said I'd be up to cooking after awhile, and that Doug and the kids could take care of the cooking chores, but both Lisa and Mo said that their job was to take care of me, and that people were happy to have a way to help out. (Doug was so incredibly thankful and grateful as we'd open our doors each night for our dinner delivery that he told me, "We are definitely going to pay this one forward once you're better. What a great way to give back when someone else is going through something like this!")
When the girls were done talking about the meal plan they'd been working on, I talked to them about a plan that I had been thinking about. Since the sisters were both going to be in town again the following weekend due to Thanksgiving, I told them that I had been thinking about having a friends and family get-together for a "Farewell to the Boob" party. Another one of my girlfriends who had had a mastectomy had a Boob Send-Off party at Hooters (I joked that I wanted a t-shirt with the 'S' at the end blacked out so it just read "Hooter" instead!) I considered Hooters for a bit, but then I decided that instead I wanted to have it at our old karaoke stomping grounds. (Music has always been an important part of my life. If you didn't see my Survivor playlist, you can check it out here: http://msprimadonna67.blogspot.com/2015/12/im-survivor-playlist.html) Thai Fusion, our karaoke hangout, was a place we'd had many fun times with lots of our friends, and I wanted to just get out and have a good time surrounded by people I love. The girls loved the idea. Doug was a little skeptical; I think he thought it would turn into a sad or melancholy gathering--sort of a facing-our-mortality assembly. I understood where he was coming from, but I also really thought it would be a fun way to just get everything out in the open and celebrate friendships. I specifically called it a "Farewell to the Boob Party" on the invitation, because "Farewell Party" could definitely have turned the mood dark. The invitation also said that anybody who was weirded out by the idea of that kind of party could just consider it a "We're-All-On-Vacation-So-Donna-Wants-To-Have-A-Party" party. I booked our regular karaoke place for Saturday night, and at least 40 people came to sing, dance, talk, and laugh. Even my oldest daughter, who is old enough to stay out at a karaoke place until we shut it down at two o'clock in the morning, was able to join us because she was home for Thanksgiving. We even had a couple of special renditions of songs that were sung in my honor, such as "Goodbye to Boob!" ("Goodbye to You" by Scandal) It was a fantastic and incredibly fun night. There is nothing like spending a great time with those you love to fortify you as you head into tough times.
The following Tuesday I had to go in and get all my pre-op work done--blood work, ekg, chest x-ray. The following Wednesday was my last day with my students; the following Friday was my surgery, bright and early. I wasn't too happy about having to be at the hospital at 5:30 in the morning, but on the bright side, it meant that I didn't have to fast as long. I wasn't allowed to eat or drink anything after midnight, so if they had scheduled my surgery at 11 instead of 7:30, I might have gotten grumpy having to wait so long to eat. (I like to eat. I also like to drink Diet Pepsi. No Diet Pepsi for long stretches of time have been known to be hazardous to other people's health.) I'm surprised I wasn't more nervous, but Doug and Lisa were by my side, and every single doctor, nurse, technician, employee that we encountered was friendly, calming, and competent, both before the surgery and during my after-care stay. When they wheeled me into the operating room, I was a little overwhelmed at the enormity of it all, but they prepped me with such efficiency and professionalism that I didn't remember much at all before the anesthesia took over. The next thing I remember, I was coming to in the recovery room, and they brought Doug in shortly thereafter. The first thing I wanted to know was about the lymph nodes. "Clear. Looks like we got it all, and it didn't spread to the lymph nodes." I think of Doug, Lisa, and me, I was the last one to get to hear that good news. They had already come out and shared it with them, and they had passed it on to friends who were waiting to hear that I had come out of surgery okay.
I spend the rest of that day and the next morning in the hospital, with both Doug and Lisa at my side. I was uncomfortable, of course, but the pain was manageable. I was overwhelmed with well-wishes via texts to me or phone calls to Doug and Lisa. Nicholas and Danielle came to visit me that evening after they had dinner at their dad's, and I spoke with Bree on the phone when I woke up from surgery. Once I saw or talked with all of my kids to assure them that everything had gone well, I felt more relaxed. Bree arrived late that night (having driven back from the L.A. area after work), and was there with me the rest of the weekend once I was discharged from the hospital. My plastic surgeon was the one who came to see me to make sure I was ready to be discharged; he said he was incredibly pleased with the way the surgery had gone, and that he would see me in a week for a follow-up.
Back in the old days, or so I've read, pioneers used to 'circle the wagons' when they felt they were being attacked, or when they needed to be proactive about protecting their own. From the first moment I started to let people know about my impending, and then confirmed, diagnosis, I have felt the wagons circling around me, protecting me, caring for me, and making sure my family was doing well. And oh, what a big circle of wagons it is! Of course there were the meals that were provided for us, but there were also hosts of people praying, sending messages of love and positivity, visits from friends who knew I might be getting stir crazy, offers to drive my children places if needed, offers to donate sick leave days should I need it, offers to check in on my kiddos or on Doug to make sure they were okay, magazines and books that people brought to help pass the time-- a million little ways I--we--felt lifted up and cared for. And right there, at the very center of the circle with me, is Doug, who has been at every doctor appointment with me, who made sure I was taking the medication I needed, who served me my meals, who washed my hair in the sink for me when I couldn't do it myself, and who even helped with the drains we had to empty twice a day and the bandages we had to change without flinching. I cannot even begin to express how grateful I am to everyone who has been a part of this recovery process, no matter how big or how small a role, because I know there are those who are not so fortunate as to have the kind of wagons I had circling me, those who feel they are fighting their battles alone.
Truth be told, I feel a little bit like an imposter when I talk about being a cancer survivor now. I am a cancer survivor. My oncologist proclaimed it to be so-he said I am cured. (Hallelujah!) But my journey was not the tremendous battle many face when they hear the word cancer. Stage 0 seems like something someone might scoff at if they are facing their 3rd round of chemotherapy, or if they've just learned of their 2nd recurrence of the disease. I haven't lost my hair; I haven't gone through radiation. Some people even lose their spouses, if the spouse can't handle the strain or the physical metamorphosis that can be a very real part of the cancer journey. Some people go bankrupt from exorbitant medical costs and inadequate (or no) medical insurance. And some people do encounter doctors who lack empathy, or employers who lack patience, or families who cannot or will not be by their side through treatment. I have experienced none of these things. In the war-torn field of the cancer battle, I am not one of the troops on the ground continuing to battle in a seemingly endless onslaught. I am not driving the tankers or flying the bombers. I am back home in the offices, processing papers. It's easy to be brave, I suppose, when Stage 0 is the diagnosis. Losing a breast is no walk in the park; it's a new reality, really. But when I read about the real bravery of women who face such incredible odds in their fight, I am in awe. And I do have something akin to Survivor's Guilt. Not many would say they would feel lucky having gotten a cancer diagnosis, but compared to how difficult so many others' cancer stories are, I do feel lucky. I am still here. A wise friend once said to me that it's not a competition; someone else's even more difficult journey does not minimize what you have gone through. And that is true. I will remind myself that I have fought, and I have earned these scars. I am a survivor, and my battle is already won.
Not so fast, you might say. Hubris has been the downfall of many. True. Could it come back? Yes. And my recovery is by no means over. I have two more surgeries on the horizon, and though I hope there are no complications, there is always that possibility. But I will play this game as I (mostly) have from the beginning. I will keep a positive spirit, I will look for a silver lining whenever a dark cloud appears, and I will keep a sense of humor. A few people have said to me they have been inspired by my positive attitude, and honestly, if I have been an inspiration to one or a few, I am honored. I look at it like this: I was diagnosed with cancer. Whether I choose to let that drag me down, or whether I choose to look for the silver lining, the diagnosis doesn't change. The only thing I have control over in that circumstance is how I go about responding to it. And trying to remain positive just seems like such a better choice for my heart, for my soul. It lets me continue to be who I am, instead of allowing myself turn into just my diagnosis.
So why tell this story? Part of it, of course, is because it is part of my history now--one that I pass down to my children and their future children. That's part of why many of us tell pieces of our personal narrative. But it's also because I've been amazed at how many women I have heard from who have experienced breast cancer that I never would have known or known about if I hadn't shared my journey. We are now part of a shared experience--a bigger history. And the more we know each other, see each other, talk to each other, the easier it will be when someone else gets thrust suddenly into this sisterhood to be able to call out to that sisterhood to begin to circle the wagons and enlist the support of those who have been right there where they are and are prepared to help them in the battle ahead.