Thursday, December 20, 2012
Sunday, August 12, 2012
Wednesday, July 25, 2012
Friday, June 8, 2012
Monday, June 4, 2012
Friday, May 18, 2012
Monday, April 30, 2012
Tuesday, April 17, 2012
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.
Monday, April 2, 2012
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.
Friday, March 16, 2012
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.
Monday, February 27, 2012
Rules seem to be the main theme of having cancer. Don’t overwork yourself, don’t sleep too much during the day, don’t drink, don’t, don’t, don’t! Most of the time the rules are conflicting. I hear a lot of, “do not push yourself too far, unless you feel up to it,” “Stay away from spicy food unless you can eat it,” and “Avoid human contact, but do not isolate yourself.” However, the main rule-and one that everyone cannot seem to keep driving home- is don’t get sick. Chemotherapy knocks out your immune system so it is really easy to get sick. This results in a number of ridiculous rules mostly concerning the preparation and eating of food. They want me to eat vegetables but they all need to be cooked. Heaven forbid there be lingering bacteria on a pepper or a green bean, or, gasp, what about a little bit of dirt on a potato? I am supposed to peel all fruit with waxy coating before I eat it and avoid fruits that have surfaces that are not easily washed. Preparing food is especially daunting as I am supposed to make sure all surfaces are perfectly clean. How in the world am I supposed to clean everything if I am not supposed to come in contact with most cleaning supplies or the objects that are meant to be cleaned? This is madness. To hell with it, I am going to clean anyway. Not only am I going to clean, but I am going to eat raw vegetables and thoroughly enjoy doing it in a stick-it-to-the-man sort of way. That’s right, eating a salad is now an act of rebellion.
I view most of the things I do as acts of rebellion. It is so easy to give into expectations of exhaustion and sickness. I refuse to let myself give in. I have begun to do things. I am reading more, I sew, I cook and I have become increasingly more involved in my community through volunteering. All of these things I do as rebellion. Just because I am sick does not mean that I can’t. I am so tired of being told that I cannot do things or that I should not be capable of acting on my desires. I CAN do them and I will. So now, every single time I go for a walk or bake cookies or even fold the laundry I do it prove them wrong. Who are they? They are the doubters and the rule makers. I have to say it is quite fun to prove them wrong. I am doing well. In fact, one could say I am the poster child for chemotherapy. I am getting less worn down by my treatments as I become more used to dealing with and responding to them. My white blood cell count is ridiculously high for someone in this stage of chemotherapy and Sven has continued to shrink. He now resembles a large, squashed piece of taffy. Yes I am bald, I feel like have the flu, my skin is dry, and migraines continue to plague me at the most random times, but I refuse to let this get me down. I am a cancer anarchist.
My acts of rebellion alone are not the only things that keep me going. So many people help me to keep up my stubborn nature. I see their help as yet more acts of defiance. Every word of encouragement helps to keep me going. Every kind act and every little bit of compassion I see helps to propel me forward into my treatment with increasing resolve. I have an amazing grandmother who never fails to send me an inspirational card each week and friends that check on me with a regularity that is almost startling. One in particular who always Skypes with me even though I know she has better things to do. I live in a community filled with prayers and reassurance. I am never going to forget how my elementary school principal reached out to hug me in church this last Sunday when I broke down during “On Eagles Wings” (This song was way too much to handle in my current over-emotional state right now. Seriously, look it up!). My family is awesome. My aunts frequently call me, text me, or sit with me on my bad days. I have a wonderful cousin who walks with me regularly to help combat the effects of chemotherapy. There is an aunt living in Vermont who periodically calls to check on me and I have a friend in Texas who never fails to do so either. Every day someone does something surprising and wonderful. I am privy to so many acts of kindness that I cannot even begin to list them all. I am so blessed to be part of these people’s lives. Every time I hear phrases such as, “You can beat this,” “You can do it,” and “You are strong” I feel an overwhelming sense of pride. I am so proud of and thankful to have people around who also refuse to let me listen to the expectations of a cancer patient. These people have kept me sane and are continuing to do so. I am happy to have so many people around to help me stay stubborn. I am grateful to be a part of this rebellion.
Thursday, February 16, 2012
Chemotherapy is absolutely ridiculous. The second round of chemo went pretty well. They gave me better drugs to cope with the after effects. Having the worst flu ever is still better than my response to the first round. In addition to feeling better I have also started to notice some changes as my body responds to being repeatedly poisoned. The first thing was smells. I’m not talking about simply smelling something. Now I smell things. It would seem that as my sense of taste slowly disappears my body makes up for it by giving me the ability to smell everything. As my cousin pointed out, “It’s like you have a superpower.” To be honest, this is the worst superpower ever. Things that typically smell strong like garlic, mint, and onions are now way too much. Try being in an Italian household and avoiding the smell of garlic. It’s impossible. Other things I used to love are now less than pleasant. I used to enjoy going to the grocery store, but now, going to the grocery store is like preparing for battle. The epic battle of, “Please don’t get too close to me because I can smell you and everything I don’t need to know about you” battle. Seriously, a little bit of perfume is all you need and honestly, smokers, is it really worth me wanting to gag for you to light up? Besides, it gives you cancer anyway… This would not be so bad except for there are a bunch of other strange side effects that keep cropping up. For example, I can no longer tolerate red dye and there is a strange, acrid, chemical smell (that only I can smell) coming from my head. I also can no longer eat anything spicy or acidic. Which is a whole other issue because what I can taste I can’t eat and what I don’t taste I can. If I eat any more starch and carbs I might as well turn into a potato pancake. Food matters aside, there are more pressing things to worry about.
This last weekend my hair started to fall out. To be honest we all knew this was coming. To be even more honest we all knew just how very attached to my hair I was. No matter how much I might talk about being strong and above it all my hair has always been my one vanity. I would like to say that I handled this like a champ. However, on Friday, when it started to fall I was a bit perturbed. Actually I fell apart. It just started to shed, kind of like a cats fur when you have been petting it for awhile. I kept touching my head and the stuff just started to come out. Flash forward to me huddled in the corner of my couch with a blanket and my cat. I am crying while I slowly hold what were once firmly attached hairs in my hands. Clearly an melodramatic response to something I saw coming in the first place, but I’m going to say it was healthy just to make myself feel better. After several hours of this and mindless television watching my parents came home and I tried to pull myself together. That evening I was brought back to the real world by a phone call from a friend of mine who now calls once a week just to check on me. The simple act of talking to someone who cares for five minutes really did me some good and helped me kick myself back into gear. On Saturday evening, fed up with the constant shedding and anticipating the inevitable, I decided to shave the remaining hair off. You try waiting for all your hair to slowly fall out, it’s hard and I, for one, do not have the patience.
Shaving your head seems like a simple matter and not complicated at all. However, if all you have are some scissors and a razor that you had previously only used for leg shaving it can be quite complicated. The whole process took about two hours. First, my mom cut my hair off as close to my scalp as she could. The plan was to then shave off the rest with the razor. Obviously Shick Quattro for Women did not anticipate this particular use for their razor. We went through three blades before we finally came to a rough, but the job is done, stopping place. Man, is my head weird looking. I think I knew that I would not make a pretty bald person, but I now I know that I don’t make a pretty bald person. At last! I have finally achieved the quintessential cancer patient trademark. Not only do I feel like a cancer patient, but I look like one. This does open the playing field for all sorts of fun though. I have enjoyed my new wigs and playing with scarves. I also have this great little, white, lacy sleeping cap that my aunt gave me. So it isn’t that bad. Being bald also comes in handy when the hot flashes come.
Chemo-induced menopause is no joke. I’m sorry, but going through menopause at 23 sucks. Now, not only am I bald and sick, but I am also on a hormone roller coaster of craziness. I am not usually a cranky person, but lately the littlest things have me responding a bit more passionately than before. For example, normally I would be angry about such things as the Susan G. Komen Foundation taking much needed funds from women (if only for three days). On this particular occasion I was seeing murder and having hot flashes the whole time. I also respond to warm and fuzzy things in a way that could only be described as overkill. Picture me watching a public service announcement, crying and stating, “Oh, that just so sweet.” So please bear with me if my reactions to seemingly ordinary things are a bit over the top. In addition to these lovely emotional responses, I now wake up at about 3:30 every morning filled with energy. One problem, there is rarely anything to do at 3:30 in the morning. I have taken to wandering the house, reading and occasionally making breakfast for my family. If anyone has any suggestions for things to do at this time I would love them. Also, I need to include an apology here to every menopausal woman that I have ever made fun of for complaining about hot flashes. Holy Guacamole you were not kidding! I have the sudden urge to strip down in the strangest places simply because I’m so very hot. The sad thing is that I am so pale from the chemotherapy that the hot flashes only serve the purpose of making me look almost normal again.
So yes, chemotherapy is ridiculous. It has it rendered me bald, menopausal and given me strange superpowers of smell that I do not want. Aside from these things I now burn to a crisp at the slightest exposure to sunlight and wonder aimlessly in search of things to do at odd hours in the night/morning. Regardless of all of these things it is worth it. It is worth it because it is working. I do not need to tell everyone how scared I was about not responding to chemo. However, there is nothing to worry about because Sven has shrunk!! You really have no idea how exciting it is that my breasts are now relatively the same size and both fit in my bra again. This is good. So good in fact, that I don’t mind being sick for an entire week or going bald or even going through menopause at the age of 23. The fact that Sven is getting zapped and slowly shrinking from my life makes everything that is happening to me wonderful. I never want to contend with this ridiculous twist on mitosis ever again and I hope that after this I won’t. It is this hope, the hope of friends, and the hope that my shrinking tumor gives me that helps keep me going. I am half way through the worst of chemotherapy. Yes, there is still a lot more to come, but everyone keeps telling me that this is the worst part. If the best of the worst is that the worst is working, then I am all for it. Bring it on hot flashes, bring it on.