Pandora's Damn Box

When people think of cancer they inevitably think of death.  At first, I was afraid of death.  I was afraid to even mention it.  However, after spending time in the chemo lounge and looking at the examples the other cancer patients made, death became a little bit easier to deal with.  I never really had to think about death before I had cancer.  I mean yes, I had been in a couple of car accidents and other scary things like that, but I never had to actually recognize death.  It was as if death was a box on the shelf that I occasionally took down and thought about organizing, but never really took the time do so.  After being diagnosed with cancer all of that changed.  I have been forced to look through the box and nothing is going to change the fact that I could die and even if I survived this round, the cancer may come back later and finish me off.  It is rarely talked about in the Chemo Lounge and my doctor was extra careful about never mentioning it, but other people are not so tactful.  People with cancer do die.  It happens more often than I would like to think about, but I quickly found out that it’s a subject you cannot avoid. 

Ironically, one of the people that helped me the most to accept my own inevitable death was a cousin of mine that I never even got to know.  Her name was Pam.  She had had cancer before and gone through treatment.  Unfortunately, it came back and this time she was not responding to treatment and the cancer had spread.  I was stunned when I heard this from my mother as I had only ever heard the nicest things about this woman.  I was also, understandably, terrified.  A little while later Pam’s mom and my aunt (yet another wonderful person) died.  At her visitation all of my aunt’s daughters were lined up to receive our good wishes and, of course, Pam was among them.  I’m not going to lie; I was scared out of my mind.  I had nothing but admiration for this woman who was the embodiment of my greatest fear.  However, as we stood in line getting closer and closer I watched her.  She seemed serene and kind sitting in her wheel chair with family and well-wishers surrounding her.  I timidly stepped up to her, leaned over and shook her hand.  We briefly made eye-contact.  I smiled sadly into her eyes and moved on.  The interaction only lasted a few seconds, but it was life changing for me.  Her look seemed to say that she completely understood and that it was okay.  I spent considerable time thinking about this interaction for the next few days and several tears and a panic attack later I realized that she was right.  It is okay.  I am going to die and I am going to be okay with that.  I realize that I am not going to die anytime soon thanks to my wonderful doctors and the support of family and friends, but someday, I am going to die and it’s fine.  Not to say that I will not be disappointed and that I am not scared, but I am okay with dying. 

The main reason I am so okay with dying is that I took the time to think, I mean really think, about my life so far.  To be honest I have been lucky to live the life that I have led.  I have had so many wonderful experiences traveling, I have amazing parents, great friends and family and I have been given the opportunity to have a fantastic education.  The most important thing that I have experienced, however, is people.  I love people.  My whole life I have loved people.  I have spent hours watching people and wondering why they do the things they do.  I enjoy watching people interact with and watch other people even more than I enjoy anything else.  I like watching people work together to complete a task.  I like watching people make connections.  Even more than that, I like making connections with other people.  Throughout my life I have had the opportunity to make several of these connections and receive an immeasurable amount of kindness from them.  These interactions only fuel a desire in me to make further connections and spread their kindness throughout the world.  People matter.  That’s it.  There is nothing else more important in this world to me than people.  When I look back on my life and see all the amazing people I had a chance to meet and see all the amazing things I have seen happen to these people I am happy.  I am genuinely happy for others.  This happiness fills me with so much joy and warmth that it makes everything worthwhile.  My life has been worthwhile because of this.  Therefore, it is okay for me to die.  Sure there are things I have yet to do and want to do.  There are things that I will definitely do, especially now that I do not anticipate dying from cancer at this time, but regardless of whether or not I get to do so, if and when I die it will be okay.  It will be okay because my life has meaning.  My life has meaning because other people have given it meaning and they have given me something that no matter how long or short my life is I can experience again and again.  I would have to say that my life is pretty complete regardless of whether or not I achieve all of my goals simply because the primary goal, that of experiencing others, has been met. 

Recognizing my own death and learning to be okay with it has certainly had an impact.  Being around people in my age group is strange.  It isn’t that they don’t try to understand, they just haven’t had to come to terms with their own mortality in the same way that I have.  Some of them have, but the majority has not and they just seem so innocent.  They experience happiness in a take-it-for-granted way that makes me burn with jealousy.  I watch them live in and move their bodies with beauty, ease and complete abandonment.  This is not something I can do now, or think I will ever be able to do again.  I am working towards a body that does not hurt or is not limited by my experience with cancer, but it will take some time before I can move with such ease and athleticism again.  Even then, I don’t think I will be capable of taking it for granted.  Now that I have had this experience, every minute and every action has a certain weight to it.  There is heaviness, or meaning in everything I do, every word I speak, and every person I touch.  Life itself has come to be heavy.  Heavy in a good way.  It is almost like a genuine appreciation that I carry around with me, a box if you will.  I appreciate everything and everyone.  I appreciate that I am able to talk, be spoken to, act and be acted upon.  I can never take anything for granted again.  This is why it is so strange to interact with others, especially those who are my age or younger.  They have a certain amount of innocence that surrounds them.  It is both beautiful and sad to me.  I wish I could go back sometimes to being like that, but I can’t.  A big part of me doesn’t want to because I now know how important everything is.  I know the true beauty of being able to experience the sun on my skin, the wind, a hug.  Not just experiencing it, but fully living in these moments.  Like I said, there is heaviness.  However, I think this is a good thing.  I thought I understood before.  I thought that I didn’t take anything for granted and that I was mature and “adult” (whatever that means because I have certainly met adults who don’t have these feelings either), but I did take everything for granted and I was definitely not the adult that I thought I was.  Life is truly beautiful and it only took the recognition of my own death to make me realize how lovely it really is.  

I don’t know when I am going to die.  I’m glad that it is not going to be anytime soon.  However, I have to say that I will miss those that I have lost so far.  The sad fact about cancer is that people do die and some of those that I have come to know from this experience have died and/or are dying.  I am sad because I will not get to see them again.  I am sad because they do not get the privilege of interacting with others anymore.  However, I know that it is okay in the end because they were amazing people and got to experience many wonderful connections with others.  I am not sure if Pam realized what an impact she had on my life that day.  She died about a month or two later.  I went to her visitation and learned how very important she was to the world.  Her community loved her and so did her family.  She was known for being kind, wise, and understanding.  She truly made the most of her ability to connect with others.  I can only hope that I make as many meaningful connections has she did.  Looking at her connections with others only further reinforced the importance of people.  People make life worth living and the interactions that one has with people make it okay to die.  I fully appreciate my life and the opportunity I have been given to live for just a little bit longer.  I promise to do my best to take this privilege and run with it.  

Awkward Shopping Trips: What Breast Friends are For.

My plastic surgeon recently told me that she wants me to buy a bra that is roughly the size and shape that I wish to be next year when the reconstruction done.  Sadly, because of my chest size she will not be able to make my breasts even unless I go a bit bigger than I am.  Also, in the future if I gain any weight I will look strange with a smaller chest and a bigger waist.  Therefore, I am now in the market for bigger breasts.  I have mixed feelings about this, but then again, I tend to have mixed feelings about everything.  At least by providing my plastic surgeon with a bra she has an idea of what to shoot for when she’s pumping me full of saline and also has a limit for how much bigger I want to be. 

As soon as I was diagnosed with breast cancer my friends were super excited about the prospect of helping me pick out new breasts.  Therefore, it only made sense to call these friends and invite them on my breast shopping excursion.  Away we went to a department store looking for a cheap bra that will double as a model for my surgeon.  Two friends opted to come with me (one, I shall call Jane and the other, Joe).  The three of us wandered around the store looking at bras.  Honestly, if anyone ever wants to see how absurd our world really is then they should wander around the lingerie department.  Everything was covered in zebra stripes, sequins, glitter you name it and I bet you could find it there.  Also, why does every bra have so much padding?   To quote a friend’s mother, “There must be several disappointed young men around.”  After some finicky searching, I finally took the few that I found without padding into the dressing room.  This task was awkward because I would try on a bra, put my shirt on over it, and then come out and ask my friends what they thought.  I’m sure that anyone in the dressing room or passing by thought that we were absolutely nuts.  Our comments were not exactly of the usual kind you hear in a dressing room.  However, I did manage to find one bra slightly bigger than I currently am that seemed okay.  You would think that I would be done, but oohhh no, Joe insisted on parading me around the store just to make sure I could be comfortable with these new accouterments.  Joe and I proceeded to the men’s department while I attempted to keep myself from looking like I was wearing un-purchased, over-sized, store merchandise under my clothes.  It has been my experience that this practice is generally frowned upon and I was mortally afraid of getting caught and trying to explain myself to the store clerks.  We continued on to discuss ties and shirts as if everything was cool.  However, it was a struggle to keep myself from crossing my arms over my chest or to keep my face in check. 

On our walk back to the dressing room the unexpected happened.  Someone I went to high school with was waiting outside the dressing room for his girlfriend.  Also, there was a line outside the dressing room, meaning that Jane was stuck inside, guarding my dressing room and that we were holding everyone up.   Not knowing what to do, I had Joe take a sudden hard turn and figured that, maybe if we walked around the store a bit more things would be better and the dressing rooms would be empty (especially of people I used to know) by the time we got back.  Sadly, this did not happen and before I could escape, my brother who had been in the store doing his own shopping elsewhere said, “Look, Michaela, it’s so and so.”  There was no escape this time.  I did what had to be done.  I straightened my shoulders, quickly made sure my oversized bra was straight and marched passed him into the dressing room giving him a quick nod and a “How’s it going?” as I went by. When I rounded the corner into the dressing room I found the door open, but could not see Jane inside.  I peeked around the door and found Jane awkwardly hiding behind the door.  I asked her what she was doing and she explained that she didn’t know what to do as everyone came in and saw her standing there, but not trying anything on.  I asked her why she did not close the door and pretend that she might be trying something on, but she said that she felt it was too late by that time and therefore, could do nothing but stand in the corner hoping we returned soon.  Of course, we did not return quickly because I was desperately trying to avoid meeting anyone I knew.  She was left, standing there hoping that we would return and trying to avoid looking people in the eye.  I quickly changed back into my normal, comfortable bra size and we got out of the store.  So yeah, mission accomplished.  Although, I have to admit, buying new breasts was a lot more fun and even more awkward than I imagined it would be.  

The Morphine Diet is Over

               Two weeks have passed since my mastectomy and I am doing rather well.  I owe a large part of this to my aunts, friends, and family who came to sit and take care of me for the first week after surgery.  One aunt needs particular thanking as she actually moved in to take care of me even though the morphine frequently made me rather ill.  I only took it for a week and decided that the pain was easier to deal with than the whole being ill part (at least I get to keep my figure?).  I am much happier these days and far more lucid (yay for being able to remember things!).   I also want to thank all of the lovely people who sent me flowers and cards.  I love waking up surrounded by flowers and encouraging words.  Thank you. 

                Mastectomy is a scary concept, but to be honest it is not nearly as bad as I thought it was going to be.  Sure, I now have a large numb section under my arm that I have been assured will shrink down to just my armpit (so yay for numb armpits!) and a permanently damaged and rather painful nerve that again, I have been told will heal but never be completely normal (at least the shooting pains down my arm will stop!), but other than that and the fact that it is very difficult to lift my arm above my head it is not that bad.  On the bright side surgery was a complete success.  They ended up leaving almost all of the skin on my breast (deep sigh of relief because that’s oddly enough not numb and very normal) and except for the GIANT scar across my breast and the missing areolar complex and everything that was once inside that skin, my breast is sort of still there.  Even my two little moles!  Hopefully when all is said and done I will feel sexy again and maybe, just maybe, have a little of that thing called sex appeal. 

                I guess success is a relative term depending on your perspective; loss of a beautiful breast versus the complete removal of cancer.  As far as I am concerned success means that the cancer is gone.  The incredibly sweet and nationally renowned breast specialist removed the tumor (Sven was a whopping 4.5 centimeters) and all the tissue around it, also known as “margins” in the medical world as well as seven of my lymph nodes.  The margins all came back as negative meaning no cancer.  The lymph nodes, which are way more painful to have removed (literally nerve wracking), technically all came back as negative too.  I use the term “technically” because one out of the seven did have some isolated, but non-metastasizing, single cancer cells.  In other words the cancer had started to spread to one lymph node (if you will recall Minerva from an earlier post), but my doctor guesses that the Adriamycin Cytoxan chemotherapy cocktail that they gave me for my first eight rounds of chemo did its job and stopped the party.  These single cancer cells still count as negative which is freaking awesome and damn lucky.  My doctor was also relieved.  He told me that this improves my prognosis significantly and lessons the chance of recurrence, which hopefully will not happen.  I will do my best from now on to keep it from happening[i].  His assistant also came out and gave me a hug, which was touching.  Especially after not being sure what would happen if they were unable to get all of the cancer and it had spread.  If it had spread I would probably be panicking as I only responded to the one chemo cocktail and you can only be on that one for so long before it causes other problems such as heart and kidney failure.  However, we don’t need to think about that because the surgery was successful. 

                In addition to the mastectomy I also had reconstructive surgery.  That’s right, three different surgical procedures in one day.  I think I deserve some sort of prize.  Oh , wait, I get to live, never mind. I could tell you that it was all a piece of cake, but reconstructive surgery hurts and morphine and I do not get along.  On the one hand I did not have to wake up completely without my breast because they were able to save more skin and therefore the plastic surgeon was able to pump up my tissue expander a bit (one A-sized breast and one C-sized).  Potentially this is far less scarring than waking up with absolutely no breast. 

                On the other hand, reconstruction really hurts.  Imagine have a large almost flat object like a small, oval plate placed under your pectoralis major muscle while wearing a bra with the most uncomfortable underwire in the world.  Then imagine that large, hard object rubbing around against your ribs like a bad attempt at playing a washboard.  However, it gets much better and that feeling goes away.   A tissue expander is essentially a large balloon that starts out flat (note the plate analogy above).  The plastic surgeon gets to fill it up with saline solution every couple of weeks and the flat bottom curves to shape around your ribs.  I had this done on Tuesday and it helped the washboard feeling immensely.  It’s much better when things contour to your body than work against it.  However, the washboard feeling was quickly replaced by a very full feeling.  The balloon pushes forcefully up against my pectoral muscle in order to expand it.  It also presses against my ribcage and lung, making it very hard to breathe.  Do you know what happens when you try not to breathe or try to take short, shallow breaths?  You yawn.  I never thought that yawning could be painful.  This feeling eventually goes away because your body forces you to breathe and therefore, stretch your muscle.  Except for a very tight I-just-spent-too-much-time-at-the-bench-press- feeling, everything is okay.  That, I have been assured, also goes away in just a few days or so.  So now my mission is to be able to lift my very sore arm above my head and return to my yoga like ability to grasp my hands in the center of my back or put on a hoodie.  I’ll settle for whichever comes first.  I also need to make it through a couple more bumps of saline and a summer of radiation therapy.  In another year or so I get to complete my reconstruction with brand new breasts!  Which, I have to wait a year for because they want the skin on my right breast to heal and recover as much as possible.  So one year of balloon boob is not so bad.  There is definitely a light at the end of the tunnel. 

                Although I see a light at the end of the tunnel, I still feel uncomfortable.  Technically I am still a cancer patient and have about two months of treatment and two or three more surgeries left.   However, I also no longer have metastasizing cancer inside of me.  It feels so strange.  I do not feel cancer free.  I’m not sure if I ever really will.  I am currently still in chemo-induced menopause and therefore an infertile twenty-three year old and might be infertile forever.  They also do not want me to have kids for at least five more years.  However, most women in my age group are able to have children within two-to-three years after treatment.  Not that I want to have kids any time in the near future, but I would like to have the option.  Also, for the next year or so I am still undergoing treatment and waiting to be operated on and for the next five years I will be taking pills to suppress my hormones.  I will also have to have blood tests and checks for tumors by my doctors for the rest of my life.  To say “I don’t have cancer anymore” just feels wrong.  So technically, I do not have cancer, but I am a cancer patient.  I am in remission and I am recovering.  My hair is growing back (I look like a fledgling bird) and my breast is in the process of reconstruction.  The surgery was successful and at the moment I am okay and desperately hoping that I will stay that way.    

---

[i] For further information on how to prevent cancer through personal habits please read Anticancer, A New Way of Life by David Servan-Schreiber MD PhD.  It is a fast read, I promise.  

Sven's Eviction Notice

Dear Sven,

I realize that this might come as a shock to you, but I think it is time that we ended our relationship.  Although it seems I have spent a great deal of time with you I still don’t seem to know very much about you.  You are constantly hanging around, but you have yet to tell me why you find my company attractive.  Even though I try to open effective means of communication I get shut down every time I try to find out what bothers you.  Not only do you lack communication skills, but you are incredibly clingy.  I consider your parasitic behavior and continuous mooching quite annoying.  You are constantly getting in the way of my accomplishments.  I can’t even give someone a hug without you providing some jealous and painful reminder that you are there!  

Aside from your possessive behavior, you do not seem to like me very much either.  I get the feeling that you are only using me.  You often intentionally cause me pain in order to promote your own personal growth.  Quite frankly, even though we seem quite attached to the outside world, I feel we have different ideas about how this relationship should commence.  After extensive therapy sessions my counselors and I have decided that it is time that we went our separate ways.  You are too needy and self-promoting for us to continue our relationship as it is currently and I do not think that we can live together amicably in the future.  In order to preserve my sanity and good health you are to move out or be forcibly removed by Friday May 4^th, 2012.  Please consider this your one and only notice.  Also, I would greatly appreciate it if you did not leave any of your personal belongings behind.  

Amicably yours,

Michaela R. Romano  

Damn Bananas!

Throughout my journey with breast cancer I have encountered several surprises. I often feel like I am one of those old cartoon characters. You know the ones, those poor souls who are just walking along and then suddenly fall flat on their backs after having stepped on a banana peel. Well, this week has not been any different. The past couple of weeks have been kind of strange for me. I have been a bit stressed because even though the Taxol has fewer side effects than my previous chemotherapy drug, Sven wasn’t shrinking. About two weeks ago Sven start to throb and I could swear that he was growing. I talked to my doctors and they checked him out last week and found that he may have grown only a tiny bit, but that they could not be sure if Sven had actually grown or not until this week. It turns out that Sven has started to grow again and I am not responding to this treatment. Woops, another banana! Everything is okay though because we know for a fact that I respond to one form of treatment. Although I wanted to avoid meeting with the devil again, I may have to. Who knows, there are several different types of chemotherapy drugs for me to try. Aside from this reassuring knowledge, I will also be having surgery in the next week or so. I have an appointment with the surgeon on Monday and I will go from there. I certainly was not expecting this anytime soon, but it is a relief to know that Sven is getting kicked out. Although I like to share, Sven and I seem to have very diverse interests.

Due to the fact that I am not responding to my most recent chemotherapy drug, I may not be able to have immediate reconstruction. I was going to have to wait a year for reconstruction to be complete in the first place, but now I will have to wait even longer. This means that I have to deal with that whole patience thing again. This is certainly one side effect nobody warned me about. It would have been nice to at least get a pre-recorded message, “During your cancer journey you will experience tests of patience, please be patient with us while we continue to stab you with needles and information. Thank you for holding your life. We appreciate your patience while you wait.” This also means that, because I am going to China in August, I will probably be completely without any kind of breast until next summer. That is okay because there are all sorts of different types of prosthesis out there for women who have had mastectomies. I am certain I will find one that suits me just fine (breast shopping anyone?). Also, I will most likely have to have multiple surgeries instead of just two. No one ever said that this was easy, but I have to say that I am pretty damn sick of procedures. I guess my patience is running out. Am I allowed to ask for a refill? All jokes aside, saying goodbye to Sven right now also means saying goodbye to my breast a lot sooner than I had expected. Yes, I knew this was coming, but I also thought I had a bit more time to get used to the idea. Perhaps it is better this way? Maybe it is better in the same way that ripping a band aid off quickly is better than peeling it away slowly. Either way it’s a shocker and I have to admit that I am a little bit scared.

Though I may be scared, I am still an optimist (Yes, you can still be an optimist and not have patience.). Not responding to treatment has been one of my biggest fears and now that it has happened I find that I am less upset about than I thought I would be (albeit clearly a little bit on the bitter side…). Having the surgery means Sven is moving out! It also means that my treatment will be more specialized as the doctors will be able to analyze Sven and know more about him and what treatment to continue with. Yay for informed chemotherapy! I have to wonder what “informed chemotherapy” looks like. I like to imagine a handsome man with dark hair and glasses who knows a lot about what is going on in the great, wide world of cancer. Aside from good looking chemotherapy, the prospects for my future look good and I will still be done with my treatment in time to leave for China. All in all it is not so bad. I cannot wait to be done with this and start to move forward again. I hope that everything goes well in the next few months and that I do not have to deal with cancer again in this lifetime. However, if I do then I will just keep jogging along and hope that I don’t step on any more bananas.

Hang'n in the Chemo Lounge with the Chemo Kids

Before I started chemotherapy I had a lot of misconceptions about what it would be like to sit and be pumped full of poison. I pictured a gently lit room with pastel walls, a droning television, and zonked out individuals hooked up to bags. Perhaps with a few overworked nurses wandering around and some people hanging out and crying. Fortunately, chemotherapy is nothing like this at all. Hanging out in the Chemo Lounge (as I like to call it) is much easier than you would think. Yes, the walls and chairs are pastel and some of the chemo patients zonk out, but overall chemotherapy is actually quite fun. The television is on, but is not loud and is often not watched. When it is being watched, the program is a source of conversation rather than a means of cutting yourself off from the rest of the room. The nurses are great. They laugh, smile, tease and tell ornery jokes some of which are completely inappropriate in an absolutely wonderful way. Speaking of ornery, the patients are quite mischievous themselves. If anyone outside of the Chemo Lounge heard some of the jokes we make about ourselves or cancer they would probably think that we were all cracked. However, it’s such a relief to laugh! We laugh so much that you would never think that we all suffered from a terrible illness. There is only one other option to laughter and that is to be a grumpy fuss budget and there is no way I am going to spend my valuable time being grumpy and depressed. I have made some amazing friends and met some wonderful people just by sitting in a chair and being poisoned.

Among the Chemo Kids I am, by far, the youngest. Everyone else is at least 15-20 years older than me. I am lucky because everyone else seems to feel the need to take care of me. I don’t mind being the “Chemo Baby” at all. It’s nice to be the spoiled brat for once in my life; although, I try not to be too bratty. It is also nice to feel so cared for. The other chemotherapy patients and the nurses try hard to make this experience as un-scary as possible for me. All of their efforts have certainly paid off because I feel incredibly safe in the Chemo Lounge. Well, except for when I fall asleep as there is a running rumor that your head will get drawn on in you fall asleep… Aside from that, I feel pretty safe. At the same time I feel a deep sense of protectiveness for the other chemotherapy patients. I frequently catch myself watching everyone else to see how they are doing each week. Some weeks, you can tell that energy levels are down or that a person simply isn’t feeling as well as they usually do. Everyone tries their best to let others rest when they need it and we try even harder to cheer up those who are obviously having a hard week. I find that the chocolate in the candy basket is an especially helpful tool when cheering others up. The overwhelming sense of care you get from every single person in the Chemo Lounge is amazing. I never expected this and I am so glad that I found such a wonderful place to get my chemotherapy.

This environment has been especially helpful for any questions or concerns I have had about my chemotherapy medications. My peace of mind is aided by the fact that I am perfectly free to ask the other Chemo Kids questions about their treatments and responses to them. There are times when I think I must be crazy and that there is no way my symptoms make any sense. It doesn’t help that the doctors do not always have an answer as to why my symptoms happen in the first place. However, finding out that the other patients have had similar responses helps me realize that, although I may be crazy, I am certainly not wrong about what I am experiencing. The nurses also consistently participate in our conversations and are a wealth of knowledge. They work very hard to smile and bring laughter into the Chemo Lounge, which makes them easy to approach. The information provided while I am hanging out in the Chemo Lounge was particularly helpful when I started my new chemo drug, Taxol. Many of the patients have been around others on the same drug or have personal experience on the matter. The majority of the patients were more than happy to let me know that Taxol was easier than my previous drug and that most recipients experienced little to no trouble. So far their predictions have been true. I love Taxol. Okay, maybe love is a strong term, but I am very happy with Taxol. I have absolutely no nausea (Thank Goodness!). This alone is enough to make me dance. I still feel very tired and worn out, but that’s not so bad. Seriously, pushing myself to go on a walk or complete an activity helps to make this feeling more manageable. My nails feel weird and are likely to fall off, my eyes feel gritty, I get headaches, hot flashes and my muscles and joints are sore, but at least I can do more than I could before. My only hope is that this trend continues for the next eight weeks and that I don’t get knocked on my ass again! So the actual chemo part of chemotherapy is not so bad. I could even use the word, “fun” as a descriptor. It’s the days following chemotherapy that you have to worry about and even those can be muddled through if you try hard enough.

Mastectomy Mumblings

Surgery has never been something I looked forward to. In fact, when I first found out about my cancer I was against the very idea of mastectomy. I guess it was because suddenly everyone was telling me what to do and trying to make “rational” decisions for me. My first reaction of course was to resist in some fashion or another. When everyone starts telling you what to do, how you are going to react, and why you need to do this or that it’s the only reasonable response. I now understand why two-year-olds instantly respond to every question with “no.” This has changed for the most part. People still seem to feel the need to tell me what to do and how to think, but I am much better at thinking clearly and listening to what they have to say. It’s easier now that I’m not in shock and feel like I am being pummeled from all sides. That being said, I would like to point out that this is my body and, ultimately, this is my decision. I do want to keep my left breast as it is. There have been no signs of cancer in my left breast and I see no reason to panic and remove it simply because some cells in my right breast went crazy. I deserve to keep some part of myself. Although this is my decision now, it was not always an option. It seems that the surgery question keeps changing, like many other aspects of my cancer, as my treatment progresses.

Initially, I was told that I would most likely need to have a bilateral mastectomy. Thankfully I do not have the cancer gene so that is no longer necessary. Then, there was discussion of a total mastectomy of my right breast due to the size of the tumor and its location. However, Sven has shrunk considerably and a total mastectomy is no longer necessary (Thank, God!). This also means that I am now moving directly into the next phase of chemotherapy in order to try and reduce Sven to nothing. So surgery has been postponed for another twelve weeks by the end of which Sven will hopefully be nonexistent. This will also make surgery significantly easier for both the surgeon and me. So now, there is also the option of a partial mastectomy or lumpectomy. Lumpectomy is only possible if the tumor shrinks to a certain point or completely disappears. At this point you may be saying, “Hey Sven is almost gone so she can have a lumpectomy.” Which would be right, but there are other things to take into consideration. In a lumpectomy procedure there is the possibility of the surgeon missing cancer cells. If one, single, microscopic cell is left my cancer could and most likely will come back. I am twenty three years old and I honestly do not want to spend the next 40-60 years (not withstanding another serious illness or accident) worrying about my cancer returning. Taking all of this into consideration, I have decided to have a skin and (if the surgeon’s game) nipple preserving mastectomy. This would mean that I could keep my outer breast, but that they would just scoop out the insides and replace that tissue through reconstructive surgery. It is a bit more extreme than a lumpectomy, but the better option of the options I have.

Losing my right breast is a bit hard for me. As I have said before I rather like my breast. Other than the whole turning against me and being cancerous thing, my right breast has served me pretty well. My breasts are not just a part of my body. This part of the process would be a whole lot easier if my cancer were in my stomach, my leg, or some other part of my body that does not help me identify as a woman. My breasts are part of my identity. They are part of how I identify as a woman and therefore, an aspect of my personality, my me—ness. That selfhood is now being taken away from me. Although it is my choice to have the mastectomy, I don’t really see it as a “choice” so much as the only choice. Which is better peace of mind and the elimination of the cancer or losing a piece of myself? In the end the cancer has to go because it is more likely to destroy me. Only, my breast is not just a bit a flesh to me, it’s so much more than that. Womanhood is so often identified with women’s bodies. Not simply how they live in those bodies, but how they act through those bodies. Certain movements, actions, etc. are used to display femininity and provide us with an understanding of woman. Taking away one of the characteristics of my body that allows me to display my femininity is hard for me. Yes, I am having reconstruction, but it will take a full year for the reconstruction to be complete. Even then, I am not sure about how complete I will feel. Although I know that no one will judge me for having a fake breast due to cancer, I still feel “unnatural.” Ultimately I feel a deep sense of loss. I am losing a significant piece of who I am. I realize that losing my right breast is not going to change who I am and that it won’t permanently affect my lifestyle. However, I do feel like less of a woman and I do feel less attractive. No one ever said that cancer is going to make me feel pretty, but that doesn’t keep me from wishing that I did feel prettier and more feminine. I certainly feel stronger. I definitely revel in the body that I have. I am certain that I can do things I never thought I could do before. However, in the end, I still feel like part of me is going away. I know I will adapt, but for now, I will just have to deal with these feelings. Perhaps, I will be able to redefine my definition of femininity through this whole experience. Perhaps, in the future I will be more than a just a woman. Perhaps, in the future I will be able to see beyond that, see myself as a human being. I am positive that the scars will fade, my hair will grow back, and that someday I will be able to put most of this behind me. Nevertheless, part of me will always question what it means to be a woman and whether my body actually qualifies anymore. So yes, I am having a mastectomy, but not a total mastectomy. I take comfort in knowing that I get to keep most of my breast and that reconstruction will be much easier for me because of this. I also will have the peace of mind that comes with knowing my cancer is unlikely to come back. So really, it’s not such a bad thing, it’s just a hard thing. Hopefully, like many other “things” throughout my cancer journey, the hard stuff will get easier too.