Wednesday, November 28, 2012

Volunteering Abroad: Being Healed vs Being Cured

Right before my last chemo, I remember thinking that cancer was almost over. I assumed that once the doctors, the hospitals, treatment and tests went away, cancer would go away too and but I learned that it doesn't.

As time passed and the days of chemo were farther and farther away, my physical appearance started looking the way it did before but internally I felt broken. Now that's not an easy thing for me to admit. I'm the one who others come to to fix their problems, I'm the one who can do anything, I'm a 'yes' person, and I not only don't like admitting that I can't do something, I strongly believe that there is nothing that I can't do.

Cancer has left me with this void, an unfulfilled spot in my soul that needs to be filled. You ask, 'what does it need to be filled with Katie?' and I say 'Let me try to explain.' (<----- too much??).

Cancer can quite easily leave you with a sort of post traumatic stress disorder. During diagnosis and treatment, it is common to be in fight or flight mode and while everyone around you is struggling with what you're going through, odds are you're trying to make it through to the next hour without puking. Tomorrow, Saturday night, and next week all don't matter - surviving the chemical warfare of chemo matters. It isn't until the end of treatment when you have to deal with the emotional side because now that you aren't trying to stop from puking or staying up all night with anxiety to only sleep through the day from exhaustion, you have time to think. While you're in the thick of things, you almost don't have time to deal with the psychological aspects of cancer and I think that's why it feels so overwhelming after treatment (which is oddly enough when everyone around you takes a huge sigh of relief and starts treating you like it's over).

Secondly, cancer is about loss. You have to mourn the loss of a body part, potentially. You need to mourn the life that you used to know. In my case, I have to mourn the body that I used to have. To be quite honest, I have to mourn naivety. I liked it a lot and I don't have it anymore. You could compare that loss with the loss of a loved one; a parent, a child, or a sibling. I am not saying it's an exact comparison, but the idea that I am trying to get across is that a year after a loved one dies, you aren't 'over' the trauma and the pain is still right there. As time passes, the pain may not be as fresh but it doesn't mean it's not there. That's the way I feel about having had cancer. Sometimes I feel like my friends or family may think, 'God, why is she STILL talking about cancer, treatment ended over a year ago' but to be honest, the pain is still there. To be fair, once you've had cancer, your perspective changes and what's important to you shifts so the idea of being the same Katie that I used to be doesn't seem possible.

There is no right way to do this cancer thing and I mean that to include; your reaction to your diagnosis, surgery, treatment, survivorship and so much more. You have no idea if your thoughts are totally crazy or totally on par with what others think when they are at the same part as you are in your 'journey' (I still shutter when I write that word. I really don't like it). I knew that the transition period between patient and survivor was difficult for most, but what I didn't know was what I needed to help me through the other side of treatment.

A few months ago, I read a blog post by the amazing Terri Wingham. She talked about wanting to take twelve cancer survivors to India where they could volunteer for two weeks and by helping others they would be helping themselves. Now when I read this post, I thought I was just reading some of Terri's wonderful writing but when I ended up in tears by the end of it, I knew that I needed to be part of the adventure.

Going to India, looking into the eyes of a woman who speaks a different language, comes from a different background, and was most likely not given the same opportunities that I have been given in life, will provide a connection and a unity that someone who has never had cancer cannot understand and although we won't be able to communicate with words, we will understand each other's pain. The thought of that makes me feel the healing power of this trip.

This trip means a lot to not only me but also to future cancer survivors. It is so easy to feel the most isolated and the most alone after treatment ends because for months you have been monitored on a daily basis and now it's a simple 'See you in three months' and your body is totally left to betray you again. This foundation will help fill a huge void in resources for survivorship and a huge void in my post-cancer life.

I would really appreciate your help in getting to India. I am currently trying to fundraise $2400 to be able to go on this adventure. Any donation would be appreciated - if everyone who read this post donated $10, I would reach my goal in a heart beat. Donate Now

I realize that not everyone can afford to donate money and if that's the case, please spread the word about this amazing opportunity to other cancer survivors. This is the beginning of an incredible adventure for future survivors and an essential part of surviving survivorship. Please pass on this link

I know from having taught in grade school and ESL at my university that quite often the teacher becomes the student and quite often, I felt like I learned more than I taught. I anticipate that India will provide the same outcome. I hope to spread laughter and kindness and hope but quite honestly, I believe this is going to be a life changing experience where I will learn much more than I will be able to teach.

Wednesday, November 21, 2012

Surviving Survivorship Part Deux

I have heard people call cancer 'a gift'. I'm not even kidding, some people refer to cancer as a gift. I think of a gift as something that I would not only like to receive but also something that I would like to give to my family and friends and I can safely say that cancer therefore doesn't qualify. The idea behind the concept is that once someone has had cancer, she develops a new perspective on life, she makes lifelong friends through the experience, she doesn't take life for granted, she lives in the present and doesn't worry about the future, et cetera, et cetera, et cetera. And, I will admit that cancer has been a great teacher and that I have learned life lessons in my twenties that I would have otherwise not learned until my fifties or sixties however I will never refer to cancer as a gift.

Most of the time, I am able to focus on what I have learned from cancer and live life accordingly but every now and again the thought of not making it to thirty because of a cancer sequel creeps into my mind. To be honest, the farther away treatment gets, the less and less I think about it coming back. Don't get me wrong, it's still a daily thought process but it isn't an hourly one anymore and I'm hoping in another few years, it is more like a weekly thing instead of a daily thing. I try not to focus on it because it's not like if I worry about it every day that I will be more prepared for the doctor to say it's back. This is the best way I know how to describe it; once you're diagnosed with cancer it is terrifying not knowing what is coming your way and how you will be affected by all of the poking, the prodding, the surgeries, the appointments, the mental game and everything in between. But, once you've had cancer, once chemotherapy isn't just a word, it's instead a past experience, being diagnosed for a second time means you know exactly what to expect and nothing terrifies me more. Recently, I saw an interview with Michael J. Fox and he said 'If you imagine the worst case scenario and then it actually happens, you've just experienced it twice.' Isn't that the truth?

I don't think survivorship is only about the fear of recurrence though either. I have some pretty hefty body image issues now. Seriously, I joke all the time about not having a breast because it's how I deal with it but to be totally honest, it f*cking sucks. It makes my heart hurt to think that the only way that I could stay alive was to chop off my breast. And I know that many people say things like 'Well, at least it was your breast and not your [insert other body part here]' but I miss her. I miss feeling like a woman or even feeling attractive. My breasts certainly didn't define who I was as a woman but they certainly were part of my womanhood, the same way that being a mother is for other woman (oh wait, cancer may have taken that from me too).

When I pass a mirror anymore, I don't look at my make-up or my hair (really, there's no controlling it) but instead I make sure that my 'boobs' (and I use that word loosely) are straight and I make sure that there is no way to tell which one is real and which one is manufactured in the same factory as stuffed teddy bears and pillows. And my hair, well, I've just given up on it. I don't look like Orphan Annie anymore but it is an interesting look. I try not to worry about it but to be honest I miss my hair. So many people would very easily say 'There is so much more to worry about in the world' and to be honest, I miss my breast more but I think we underestimate the trauma of losing our hair. At the time of treatment, it didn't bother me and even being bald for so many months really didn't phase me but it is now that I am trying to grow it back that I find the injustice of the hair loss of chemo (ugh, especially the thought of having to go through treatment again and losing it all over again).

I think cancer also presents this void in your life once you've finished treatment. I feel as though everyone around me took a huge sigh of relief when treatment was over and managed to translate the end of treatment as being the end of cancer whereas I seemed to look back at what I had just been through and think 'Holy shit, I just had cancer. Now what?' It was almost like it was just beginning for me while it was just ending for every one else. Although the physical warfare is intense, you know that the nausea will pass and the bone pain will lessen but the emotional stuff, it gets suppressed until after treatment. While you're in the thick of things, it's almost like you don't have time, patience, or strength to deal with the emotions that come with a cancer diagnosis and it's not until after treatment, once you stop living day by day (or minute by minute during the bad days), that you start dealing with your diagnosis.

As my physical strength started to return and my hair started to grow back, I stopped looking sick and I was able to go back to work and lead a normal life again except things weren't normal anymore. I don't know how to do anything that I used to do now that I've had cancer. I've used this analogy before but you know how new mothers often explain leaving the hospital with their first child with a lot of anxiety? I have often heard new moms explain it in a way that they are surprised that their medical staff is just going to let them leave with this newborn without a manual and without someone telling them what every coo, and goo goo means. I felt the same way after my mastectomy - 'What do you mean you're just going to let me leave? I don't know how to get through a Tuesday with only one breast. And to be honest, I've never experienced any other day without a breast so you might as well add Wednesday, Thursday, Friday, Saturday, Sunday and Monday to that list. And while we're at it, what's the protocol for holidays?' I somewhat still feel that way now. An example would be when I fly, I often think about my prosthesis (what if they pat me down?). Everything has changed but everyone wants me to be the same. Well, it's not happening. Now, I know at this point all my cancer-sisters are nodding their heads and all my never-had-cancer-peeps are thinking, 'Ok, she's lost it! What the hell is she talking about?' and I'll try my best to explain it.

When I was first diagnosed, like within a week of being told the news, my mom and I were out at a housewares store and the sales rep was trying to tell us about the current promotions and all I kept thinking was 'I have cancer. I have cancer. I have cancer.' Intermittently, my thoughts were interrupted with '50% when you buy the salt andpepper shaker' and 'Buy one get the second for free' but primarily I was focused on cancer. I certainly don't think like that anymore but I still do have a lot of thoughts go through my head that would have otherwise freed up the space to let me dream of my life without cancer. At the same time, although the 'I have cancer. I have cancer.' thought doesn't go through my mind during every waking minute, sometimes I do feel like I am lying or omitting information when someone like a cashier asks 'Would you like to donate a dollar to [insert cancer charity here]'). In this weird way, I feel like I should tell her that I had cancer myself. I think it's because even though you can't tell by looking at me, I still feel like I am in the thick of things and I think in a way that I am; the cancer just moved from my breast to my mind. I still think about it, it's just not in as much of an intense way; now when I think about not having a breast, it isn't traumatic, it's not as fresh and instead it's just sad (and yet normal).

Tomorrow I have a doctor's appointment. It's just a consultation for my future reconstruction but I always fear the look of 'Something's not right' on the doctor's face. I don't know if that fear will ever go away. I just had no concept that even in remission and even after being told that I am cancer free one day, that I will have cancer for my entire lifetime and without writing about it, others won't understand it either.

Wednesday, November 14, 2012

Does Everything Happen for a Reason?

Is it ok to say 'Everything happens for a reason' to someone who is facing a difficult situation? No, I don't think so either and yet many people have said that to me about getting breast cancer at twenty six years old. For some reason, I don't mind it as much when the person saying this five word phrase is a breast cancer survivor herself but regardless, I feel as though it's fine for me to say this or think it but when someone else says it I want to snap back with 'you have both of your breasts, don't you?' or 'You've never experience the wrath of chemo, have you?'.

I could go on about what people say when you have cancer (actually, I have gone on about it, many times) but instead I want to share a story with you that has made me a believer of 'Everything happens for a reason.'

About a year or two before I was diagnosed, I went to a nutritionist to discuss my weight. Within about 10 minutes of discussing my life, my weight and my lifestyle she had said that she thought that I had something called PCOS (Polycystic Ovarian Syndrome). In order to find out for sure, I needed to get off the pill for three months and get a blood test, neither of which sounded appealing so instead I just assumed she was right and looked into it further.

Two of the most common symptoms of PCOS are being overweight and rarely getting a period, both of which I had. While I was on the pill, I was getting my period of a regular basis but left to my own devices, I had maybe three or four periods a year. I came home after that appointment and did what any normal person does - googled the hell out of PCOS. I read that it was going to be very difficult to get pregnant because my absent periods had meant that I wasn't ovulating. I stared at the computer screen and cried. The more I read, the more I cried.

So what is PCOS, you ask? I took this right off of -
The ovaries, where a woman’s eggs are produced, have tiny fluid-filled sacs called follicles or cysts. As the egg grows, the follicle builds up fluid. When the egg matures, the follicle breaks open, the egg is released, and the egg travels through the fallopian tube to the uterus (womb) for fertilization. This is called ovulation. In women with PCOS, the ovary doesn't make all of the hormones it needs for an egg to fully mature. The follicles may start to grow and build up fluid but ovulation does not occur. Instead, some follicles may remain as cysts. For these reasons, ovulation does not occur and the hormone progesterone is not made. Without progesterone, a woman's menstrual cycle is irregular or absent. Plus, the ovaries make male hormones, which also prevent ovulation.

Anyway, I never ended up getting tested and just assumed that I had PCOS. I had prepared myself for a long road of pregnancy difficulties. What I wasn't prepared for was the unexpected obstacle that chemo was about to produce, or so I thought.

Fast forward to March 16th - my mom and I are with the oncology surgeon hearing all about my treatment. I ask if chemo will affect my fertility and she throws out a statistic of 40% - I only have a 40% chance of being able to have a baby after chemo. I burst into tears and the rest is a blur. I seem to black out for the rest of the appointment as I was trying to envision my life without children. I 'come to' in the parking lot as I laugh my way to the car (when things get really bad, I laugh, not intentionally, I think it's just my way of expressing pure frustration - some people cry, I seem to laugh) and saying 'mother f*cker' in too loud of a voice. My oncology surgeon referred me to a fertility doctor that I would see in April.

Keith and I head to the fertility doctor after my surgery but before chemo started. We discuss all of our options with the fertility doctor and I am sent for an internal ultrasound then sent to another doctor who reads the results.

Keith and I are sitting in Dr. C's large office while he reads my imaging results and we hear him say the word 'Excellent'. Keith and I look at each other and what I wanted to say was 'Don't eff with me here doc, I got enough on my plate. What could possibly be excellent in this situation' but I instead sat on the edge of my seat waiting for him to explain himself.

He started with, 'Well, you have something called PCOS.' I filled him in on my prior assumption, he said 'Well, it's no longer an assumption, you have it.' Okay, so?? He continued to explain that the average woman has 24 follicles on her ovaries and I had 60. It just so happens that it is the follicles that get damaged in chemo so even if fifty percent of my follicles get damaged, I will still have more than the average woman. Whoa, he was right, that is excellent!

He then said 'I don't mean to give you false hope but I really do think that you and Keith could have a healthy family after treatment without doing any preservation.' Holy shit, excellent was an understatement.

Months later, I spoke to an oncology fertility doctor and I told her about my situation and she told me about ovarian drilling. In EXTREMELY simplified terms, ovarian drilling is a procedure where a doctor 'damages' your ovaries in order to encourage ovulation. The way it was explained to me was, they go in and damage some of the follicles (because the 'poly' part of PCOS means 'many' and in many cases it means 'too many'). By damaging the follicles, ovulation is more likely to happen. She said essentially, chemo did what ovarian drilling would do for other women.

I kid you not, my periods came back about two months after chemo ended and I have gotten one every 28 days ever since - something that has never happened in my life prior to chemo. Needless to say, I am a bit of a believer in this whole 'everything happens for a reason' business.