Wednesday, February 29, 2012

Is It Weird That...

I'm a 'list' kinda girl. I like writing lists, crossing things off my lists, and completing lists. I like grocery lists, to-do lists, people-to-call lists, and any other kind of lists. This week, I created a list of things that I have felt lately that I wanted to convey but couldn't really expand on any one issue in particular.

Here goes nothing;

1. Is it weird that the word 'cancer' has lost all it's previous meaning and now has the same impact as the word 'toast' or 'shower curtain'?
2. Is it weird that when someone says 'Tell me about yourself' the word 'cancer' is the first that comes to mind?
3. Is it weird that I wonder if I should stop using deodorant, stop using microwaves, become a vegetarian, only drink bottled water, work out 2 hours a day, drink 4L of water a day, never get another X-ray, tell all my girlfriends to get off the pill, stop drinking coffee, drink more coffee, stop using my laptop, get rid of my cell phone, eat only organic foods, stop using household cleaners and substitute them with lemon and hot water, stop wearing make-up, hold my breath around people who smoke, etc. etc. etc.?
4. Is it weird that I think I looked better bald than I do with this Orphan Annie hairstyle?
5. Is it weird that I squeal with excitement when I get my period?
6. Is it weird that I wonder if anyone would ever date me if anything ever happened to Keith?
7. Is it weird that sometimes I wish I had to go back into treatment because then I would be under the constant care of doctors and nurses instead of left to my own devices?
8. Is it weird that I am more scared for someone I love to get cancer than for me to go through it again?
9. Is it weird that I feel like my cancer defines me?
10. Is it weird that I can't remember my life before March 11, 2011?
11. Is it weird that I put pressure on myself to get back to normal even though I don't know what normal means anymore?
12. Is it weird that although I love the camaraderie of connecting with other survivors, I find that most times it's very overwhelming afterwards?
13. Is it weird that I have learned to expect to hear 'Well, we don't really know because we don't have any data on [insert topic here] for women your age' at least once every doctor's appointment?
14. Is it weird that I'm proud to be a cancer survivor but ashamed of what it did to my body?
15. Is it weird that the thought of going back to work brings me so much joy and so much fear at the same time?
16. Is it weird that when someone comments on my hair, I want to tell them that I just finished chemo?
17. Is it weird that sometimes I feel so isolated because 26 is just too f*&%ing young to have cancer?
18. Is it weird that sometimes it feels like the whole world has just caved in on me and it seems that at times I realize that I had cancer when 2 minutes before I felt invincible?
19. Is it weird that nothing could have prepared me for being the reason that my mom is now 'high-risk' in terms of developing breast cancer?
20. Is it weird that I felt like more of a warrior in treatment than I do now?
21. Is it weird that when I don't feel positive, I feel like others see me as really really negative instead of just not-positive?
22. Is it weird that I feel like this happened for a reason or do I just tell myself that because I can't comprehend another explanation?
23. Is it weird that I feel comforted when I'm at the hospital instead of angry or fearful like so many others?
24. Is it weird that when I see someone getting aggravated because they have to wait in line at the grocery store or flip someone off for driving too slow, I want to say 'do you not have enough to worry about?' and then show them my mastectomy scar?
25. Is it weird that every ache or pain that I feel, I wonder if cancer is attempting a sequel?
26. Is it weird that I'm bored telling my own story and I feel like I need a new story to tell?
27. Is it weird that overnight, we are expected to mentally prepare for losing a body part and are given a numb lump in its place?
28. Is it weird that when I look at pictures of the pre-cancer me, I feel sad?
29. Is it weird that I feel guilty for being so tired all the time?
30. Is it weird that although I wish I wasn't on Tamoxifen, some days I wish I had to take it for the rest of my life?
31. Is it weird that my niece and nephew are totally used to relatives going bald due to cancer on both their mom and dad's side?
32. Is it weird that some days I want friends/family members to totally go over the top and tell me how proud they are of me for dealing with all this shit?
33. Is it weird that some days I want friends/family members to not mention the word 'cancer' and especially avoid the fact that I've had it?
34. Is it weird that I get angry when someone says 'you can always adopt' when I say we might not be able to have children?
35. Is it weird that I hold a lot of guilt for being the reason that Keith and I may not be able to have children even though I know I had no control over it?
36. Is it weird that I wish I would have had radiation because I fear that one cell snuck through chemo?
37. Is it weird that I feel like cancer robbed me of many parts of my womanhood?
38. Is it weird that pink ribbons kinda make me angry anymore?
39. Is it weird that when I see someone who is obviously going through treatment, I want to hug them and tell them to call me if they need anything?
40. Is it weird that I'm the reason that my whole family has to tick 'cancer' on the family history questionnaire at the doctor's office?
41. Is it weird that I feel like I'm complaining when I write lists like this?
42. Is it weird that all this time I thought 3 consecutive periods 28 days apart was a fantastic thing when really, according to my oncologist, that may be an indication that my Tamoxifen isn't working as well as it should be?
43. Is it weird that when I sleep for 8 hours straight, I feel like a celebration is in order?
44. Is it weird that I make jokes ALL THE TIME about having cancer or having one breast even though cancer's not funny?
45. Is it weird that I fear lymphedema every time I stir a boiling pot, I stay in the shower for too long, or my shirt is too tight?
46. Is it weird that estrogen has taken over for cellulite as my current enemy?
47. Is it weird that I didn't fight any harder than others who lost their battle with cancer but I'm still alive?
48. Is it weird that I catch myself staring at other women's chests trying to remember what it was like to have 2 breasts?
49. Is it weird that I have a damn anniversary for everything related to cancer (diagnosis, mastectomy, treatment start date, treatment end date, etc.)
50. Is it weird that I worry about all of these things when I should just be so friggin' happy to be alive?

Wednesday, February 22, 2012

Life As A Single-Breasted 27 Year Old

Many times I think the word 'cancer' is what scares people when I tell them my story but for me it is the word 'mastectomy' that I choke on every time. It has been a great source of embarrassment and although I had no choice in having cancer or the location in which cancer was growing, I feel a sense of shame when I say the 'M word'.

I have always said, from day one, that having breast cancer at 26 is no harder than having breast cancer at 56, it's just different and I continue to stick to that but I do have to admit that only being able to enjoy two breasts for 26 years is a hard pill to swallow (and I've had my fair share of pills to swallow in the past year). My boobs weren't fantastic, they weren't perky, and they certainly weren't perfect but they were mine and there were two of them and before cancer, I had pride in my boobs when I didn't necessarily carry a lot of pride about the rest of my body.

At a time when I am supposed to be at the peak of my sexuality, I only have one breast. How am I supposed to feel sexy when part of my sexuality has been cut off. At a time when I'm supposed to be using my breasts to nourish a child, I am told that I will never be able to breast feed. At a time when I'm supposed to be filling my closets with a new wardrobe, I wear scarfs and baggy shirts.

In the shower, I let the soap from my neck run over my chest so I don't have to touch the place where my breast used to be. I wear my mastectomy bra when we're going somewhere 'formal' because while every one else feels good because they are dressed up, I want to feel good because it looks like I have two breasts. I will never be able to fill out a bra or a bathing suit or a dress shirt properly again. The word 'mastectomy' is no longer a fear, it's a reality. My breasts betrayed me and although the night before surgery, Keith and I cursed at 'Righty' for a few minutes, I miss her very much. I wonder how Katy Perry's rendition of 'California Gurls' would sound with '....and mastectomy bras on top' instead of the original use of 'bikini'.

I'm not sure how well I will be able to explain this but waking up without a breast didn't bother me at the time; I had woken up from surgery (always a good thing), they were confident they got it all, I didn't have cancer in my body any more, and a breast isn't a limb or a lung or a kidney. However, the feeling of relief didn't last long before the shame kicked in and the word 'mastectomy' made my ears bleed.

I remember going to a friend of a friend's house a few weeks after surgery, I couldn't hug him (which he understood) and a girl I had never met asked why. My friend was quick to say 'she had a mastectomy a few weeks ago'. Now a comment like that these days could be compared to some like 'I had toast for breakfast' because it just rolls off my tongue anymore but then, then it was fresh and the word was still so new. The word 'mastectomy' carried so much meaning. This is what I heard her say; 'She had her femininity removed a few weeks ago' or 'she became less of a woman a few weeks ago' or even 'she can't provide the same sexual satisfaction for her boyfriend as she once could a few weeks ago'.

I also remember an e-mail that was sent by a family member to update others in the family that included the word 'mastectomy' and as I read it (after it had been sent), as soon as I read 'mastectomy' a lump appeared in my throat. Why did that word need to be written, why did any one need to know that I was having my breast removed? I realize how foolish this may sound, but at the time, this 10-letter word was horrifying.

I try to make it easier for others by using humour to put them at ease (at a wedding in the summer, at a 'dance-off' I danced to 'All the Single Ladies' by Beyoncé and pointed to my left breast implying a whole new meaning of the song). Although I make it easier for others to talk about cancer, and start/continue a dialogue, I sometimes wonder, 'who is going to make it easier for me?'. I look at the pamphlets that I was sent after first being diagnosed and the women on the front pages are old enough to be my mother and sometimes my grandmother. The stats inside always start at 40 years old and all I ever heard during chemo was 'Well, there is no data for someone your age'. None of my friends have been through breast cancer (thankfully) so I can't relate to them either. It's truly isolating. The only person I really confide in is Keith and I can safely say I am the only single-breasted woman he has been with. Although I would like to make some witty comment about being one of a kind, instead I feel like I'm the odd one out.

Now any time I write a blog entry like this I always feel like I need to say how lucky I am to be alive and how grateful I am that the cancer wasn't in my pancreas like my Aunt Sandra or hadn't metastasized like so many other women. I try to be upbeat and I try to see the positive side of things but some times it just gets to be a lot. This entry isn't coming from a place of complaint, rather a place where there is a void in my life. Some days I notice myself looking at other women's chests because I miss the days of having two breasts and it's almost like I have forgotten what it is like. There's a sense of jealousy and sometimes I feel annoyed that they are taking their breasts for granted (I'm not sure what I expect - women to caress themselves in public to show their appreciation for their breasts?).

Any time I have to sign up for something that requires a username anymore, I use LovelyKatieLumps as a way to be sarcastic, like, most women have 'lovely lady lumps' whereas all I got were 'lovely Katie lumps' and those lovely Katie lumps ended up being lovely cancer lumps. I think with the use of humour, I am able to protect myself a little bit from the reality of not having two breasts at the age of 27. I think in a weird way, I am almost numb to the term 'mastectomy' anymore because when I speak of what I've been through, I feel like I am talking about someone else, like I am telling someone else's story. Can this really be happening to me?

Although I stick to what I said about it being different dealing with breast cancer in your twenties, what's frustrating is that I will have to deal with this in my twenties, thirties, forties,...

Thursday, February 16, 2012

My Top 10, Part Deux

So, six months ago I completed a Top 10 list of how cancer was crampin' my style. I said I would update it in approximately six months and amazingly enough, here we are six months later.

My original Top 10 were the following;

The Lack of Sleep
Looking Sick
The Chance of Infertility
Being The Reason For Other's Tears
Having Uneven Boobs
Pulling out My PICC Line
The Cost of Meds
Continual Hair Loss
Student Loan Payments While Being Unemployed Thanks to Cancer

For obvious reasons, this list has changed but some of the issues from 6 months ago remain today.

The Lack of Sleep
When I was diagnosed, it was overwhelming, it was full of so many unknowns, it was decision mayhem so trying to sleep seemed impossible. My family physician prescribed some anti-anxiety meds that I took before bed and they helped me sleep. Fast-forward 8 months and I was still taking them, every night. I found out that they are highly addictive and habit forming so, I wanted off of them immediately. I took it upon myself and weaned myself off of them. It was super successful and I didn't go into any withdrawal except now, I don't sleep very well. I wake up constantly because I'm too hot (thank you hot flashes [thank you chemo and Tamoxifen]), I'm too cold, I have too many pillows, I don't have enough pillows, my expander is moving, Keith is cuddling me, Keith isn't cuddling me, etc. etc. etc. I just miss my pre-cancer sleeping life.

The Chance of Infertility
Well, this one unfortunately stays on my Top 10 list, although I have been referring to myself as Fertile Myrtle thanks to the three consecutive periods 28 days apart. What, what!! Anyway, so many friends are trying to have babies right now and I want to be part of that group. I remember sitting with my surgeon 5 days after hearing 'you have cancer' and her answering my 'will I be able to have children after chemo' question and her telling me that I had about a 40% shot. I broke down crying and said 'I can handle having cancer, I can even handle losing a breast, but I cannot handle not being a mother.' That was a hard day. Although I have come to terms with it, I often wonder how I will be able to answer the question 'And why don't you have any children' if I am deemed infertile.

Cancer Limbo
I'm at this weird point after treatment where people expect that you should be normal again and yet I'm still realizing 'Holy shit, I had cancer.' I have said this many times, but I think we assume that there is an end to cancer, that it is over at some point and some times I feel like I have just begun. There were many parts of cancer that I wasn't prepared for but having to transition back into my own life takes the cake.

Being Off Work
I know so many people who would love to take time off work and wonder why I am itching to get back. First of all, being off hasn't exactly been a 'holiday' and I am one who loves routine and this past year hasn't exactly been 'routine'. I want to make money again, I want to have a purpose, I want to have the normal amount of stress in my life again, I want to think about other things than cancer. I have been asked 'when are you going back to work' so much lately and although it is part of the natural progression of this point in my cancer days, I often wonder if people are asking me because it will make them feel better knowing that I'm back at work, back to 'normal'. Right now, I am just waiting for insurance to clear me to go back to work, otherwise, I'd be at work right now (isn't it ironic that in the beginning they didn't want to cover me and now I can't go back to work until they give me the ok?). I hate answer the question 'What do you do?" because my response always starts with "Well,....".

So, because I had an estrogen based cancer (I like to tell people that I am too much of a woman), I have to be on estrogen 'blockers' for the next 5 years. It's one little white pill that I take every night; it seems pretty harmless. However, like everything in this world, it has side effects. It still gives me some pretty wicked hot flashes and a little more weight gain (what difference does that make anymore), but the real kicker is that we have to wait 5 years before we can try to have a baby because of this little white pill. I also have an increase chance of some other female cancers because of this drug but the benefits outweigh the costs so I keep pill popping...

Like I mentioned in my previous blog entry from a few weeks ago, I have felt so much guilt in the past year, it's unbelievable. I feel guilty about not working, about being the reason for others' tears, for putting Keith through what I've put him through, for 'getting' cancer (like I had some control over it or something), for talking about cancer every day, for not having a 'worse' cancer when talking to those who have had both breasts removed or whose bone scans weren't clear, etc. I feel guilty for how much I've inconvenienced those around me and for never being able to repay any of them back. Guilt was another one of those things that I wasn't prepared for.

My New 'Set' of Breasts
They suck! So Lefty had a reduction and I can't feel a thing on my left side anymore. Yes, she's staring straight ahead again which is nice but I have lost 100% of the sensation there. I wish I would have known that before I agreed to a reduction. Righty is a lump on my chest, not a breast. It's not round, it's missing a nipple and it looks nothing like my other one. A year ago, I didn't have a great set of boobs but these ones are awful. Oh, and let's not forget that my belly is bigger than my boobs now so I'm extremely disproportionate. I hate that!! I remember thinking (pre-cancer), if I ever had breast cancer, I would get them both removed and get the sweetest rack ever. It's not exactly that easy. Tradesies, anyone?

After Effects of Side Effects
I've said this to a number of people lately but when it comes to my hair, when I was first diagnosed, I thought, I'll cut my hair and donate it and I felt like a rock star for doing that. My mom gave me a really cute cut and I rocked that. Then I had to shave it, I've always wanted to know what it felt like to shave my head and let me tell you, it felt awesome. I just kept thinking, 'Well, at least I'm taking control over this' and then came being bald. It actually didn't really bother me, I left the house bald all the time, both with others and by myself and I wore it as a badge of honour. But now, now I have this awful hair that no one can tell is post-chemo and people think I just cut my hair this way. I have no excuse any more. Now I look like a 75 year old woman who has had the same perm for the past 30 years and I get touch-ups every other Wednesdays. Yuck!
And the weight gain... Well, let's be honest, I was way overweight before cancer but then with the inactivity, the fatigue, the steroids, the chemo, the eating-whatever-my-stomach-could-handle days, I packed on another 30lbs. Now, with Tamoxifen, weight gain is another side effect. Cancer hasn't caused me to be overweight but it sure hasn't helped. I've started seeing a nutritionist and am trying to get in my exercise but when you're looking at losing 130lbs, the 'what difference does it make' approach annoyingly wins some of the time.

Every Time Cancer Strikes Again
Being a cancer survivor makes it very hard for me to hear about others who are diagnosed. I know what they are about to face and the insecurities, the uncertainties, and the unknowns that they are going to have to deal with now, next week and next year. The beginning was the hardest part and knowing that someone I know is going through it, something that I never want any one else to experience, is heart breaking. It's also hard to deal with when someone dies because of (breast) cancer because you wonder, 'why not me?'. I didn't fight any harder than she did, why was I spared? Last week, the blogging world lost two incredible young women to breast cancer and it was a hard week for so many. I didn't know them very well, but because I followed them and their stories, my heart dropped when hearing the news and went out to the families of both of these women. I think you internalize the situation a little and start wondering about your own future. A part of you relives the diagnosis and feel the fear worse on the days that you hear about others being affected by this terrible disease.

Fear of Recurrence
I will always worry that my cancer will come back, and every time I feel a pain or an ache, I wonder if cancer is taking another part of my body hostage. As much as I hate to say this or admit this, because I was only 26 when I was diagnosed, the odds of me getting cancer again are relatively high. Is it possible that I will die at 85, an old happy woman? Yes! Is it probable? I don't know. I know of women who were my age when they were diagnosed and are now 55 years old and never had a recurrence but I will always fear it. When you're in treatment, you know that if something is wrong, they will find it because you are being constantly monitored but it's not like a blood test every three months is going to show something like spots on my liver.
I think the thought of having cancer again is worse than having it the first time because in round 2, you know what to expect, you know what a PICC line feels like, you know how awful chemo is, you know people are going to say inappropriate things, you know the second time around that there aren't any unknowns left and you know exactly what you're about to go through.

Well, there it is. I can't imagine this will change a whole lot in the next 6 months, but if it does, I will make room for a part three. I'm assuming that others can relate to this list but in no way is it accurate of what all post-treatment individuals feel. Maybe with a little time, some of these feelings will melt away (here's hoping).

Thursday, February 9, 2012

Other Side of The Coin

This week, I've asked Keith to write my blog entry. I think many times caregivers are forgotten about, or come second to the patient's needs so I thought it would be beneficial for caregivers to have some thing to relate to. So take it away Keith...

About a week ago, Katie was reading me her latest blog (she likes someone else's input before she posts them), and she asked me to be a guest blogger. At first I was hesitant as I am more of a reader than a writer, but when she explained to me that she wanted me to write about being a caregiver and what it's like being the spouse of someone going through cancer treatment I thought it might be therapeutic for me, as well as give someone else an idea of what they might encounter when they are confronted with the challenge. In no way, shape or form is this any kind of comparison to what cancer patients go through, but more of an "other side of the coin" blog about getting through cancer treatment with a healthy relationship still intact.

So, here we go.

I thought I should start at the beginning with the day of diagnosis. I will forever feel guilty for not being at the appointment with Katie the day she got her biopsy results back and found out she had breast cancer. I work in a hockey arena for the local NHL team in refrigeration. Needless to say, the winter is a busy time for me. With only 3 other people in my department who can cover my shift it's hard to get days off during this time. Looking back now, I should have insisted I be with her, but to tell you the truth, I didn't think the outcome was going to be breast cancer. I mean, who gets breast cancer at 26, right? Getting that news over the phone, while at work, was torture. Thank goodness Katie's mom was with her. Maybe it was my way of subconsciously denying the outcome. Guess we will never know.

Katie had surgery to remove her right breast 17 days after her diagnosis. Her mother and father came down, as well as her brother and sister-in-law and my mom. The point at which we had to say goodbye to everyone and we went to pre-op (they let me stay with Katie as long as possible because she was so scared) was something I will never forget. There's a point when everything hits you, when you realize, 'Holy shit...this is it. We are actually doing this. This actually happened to us!' For me, this was it. The most helpless feeling in the world is when you have to put the life of someone you love in someone else's hands. I can see why some turn to prayer in these times. It's a feeling I never want to feel again.

The days between diagnosis and the start of treatment are a bit of a blur. We were carpet bombed with information in a very short amount of time. It's so difficult to make decisions when you have 3 or 4 different opinions, terms and vocabulary you're not familiar with, not to mention the shock you feel when you learn what's in store for you for the next who knows how long. Fertility was a major concern of ours. We have yet to have children and were both hoping to remedy that within the next 2 or 3 years (after I manned up and bought Katie a ring of course, but that's a completely different story). We met with a fertility specialist but came out of the meetings with more questions than answers. As for fertility after chemo treatment, and what to do to protect yourself during treatment there is definitely many varying opinions. After some long discussions and as much research of our own that we could find we decided against any treatments. Anything we could do would have delayed Katie's chemo therapy a minimum of 8 weeks and also involved pumping her full of hormones. Katie's cancer was hormone based so this just seemed like the exact opposite of what we were looking to accomplish with chemo therapy and post chemo treatment. As Katie says, no sense having a baby if she's not around to raise it.

Needles... oh how I hate you. Katie has a severe phobia of needles. This has caused as much anxiety in both our lives as any treatment Katie has had to date. She sweats, cries, bitches, bites and claws through almost every one. I'm not sure if I even need to say this but there are a hell of a lot of needles for the average cancer patient so this affected us enormously. For days before any blood work Katie would show signs of anxiety about the up coming appointment. At first, I thought she was being childish, but after I went with her to get a needle for the first time, I saw the absolute terror in her eyes. She managed to get almost every needle she was required to get, with the exception of a couple at the end of her treatment that the doctor said she could go without. Katie also had an expander put in after her mastectomy which required regular injections to "inflate" with saline on a weekly basis. It's a good thing that by the time surgery, chemo, and expander injections came around it was summer time, because I had a lot more time off available. On a side note, my work was amazing with this. I was able to go to every chemo session, every saline injection, and every doctor/oncologist appointment. They gave me the time off I needed to make sure Katie didn't go through anything without me again. I can't tell you what a relief it is to have this type of support behind you, I am very lucky.

Treatments 1-3
Katie's first 3 treatments were called FEC (Fluorouracil (5FU), epirubicin and cyclophosphamide) and her last 3 were something called Taxotere. I told you there was a lot of vocabulary. I won't lie, I had to look it up. The first treatment went really well. She had since had a PICC line inserted in her arm. It's kind of like a permanent I.V. but not as intrusive. This helped because she could avoid having an I.V. put in every treatment which saved us both from 4 months without sleep. She was up and about after only a few days after treatment and I thought we over estimated the harshness of chemo therapy. Treatment 2 brought me back to reality, and treatment 3 even more so. The word helpless is the only one I can think of to describe my feelings during treatment. You sit there watching the person you love go through sleepless nights because she can't lay on her stomach or in any position except sitting up because of surgery, night sweats and hot flashes all day, vomiting and upset stomach for days on end, and mood swings like nobody's business. You catch yourself getting frustrated with them when you ask what they want to eat, they tell you, you make it, and they won't eat it by the time you're done because their stomach turned upside down while you were in the kitchen. You catch yourself getting short with them, but you don't realize you're doing it until they start crying because they think you're mad at them. The frustration is incredible and you will go through it no matter who you are. Mother Theresa herself couldn't go through this without showing some of it. These are the times I would come to appreciate the support we had through family and friends. They played a huge role in me keeping my sanity. Friends would come from out of town to stay with Katie while I got out of the house to shoot a round of Golf, or meet a buddy for a beer or 3. Just a couple hours out of the house to go grocery shopping was a treat. It consumes you, and if you don't take the time for yourself it will take over your life.

Treatments 4-6
Katie's last 3 treatments were something called Taxotere. These treatments had slightly different side effects than the first 3. The nausea wasn't as prevalent through these treatments, but she experienced a lot 'bone pain'. As she explained it to me, it was as if she was experiencing the growing pains we all felt as a child where you're laying in bed at night and your legs wouldn't stop hurting, but this was through her whole body. There were times when she didn't sleep for what seemed to be days, and this of course greatly affected her mood. There were times when out of nowhere she would start crying, asking how, with all the advancements in medicine, cancer treatment could still be so rudimentary. How, through all the sacrifices of cancer patients before her, could we still be bombarding the whole body with chemical attacks like as if we were nuking her whole immune system to kill an in-grown toe nail?

Not having the answers to all her questions was equally as frustrating. As a man, you feel as if it's your job to take care of the loved ones in your family. When something is so out of your control, you just want to at least have a half decent idea of why this has to happen to them, but with cancer, there is no right answer. The hardest lesson I had to learn is to stop trying to have all the answers. Some times she just wanted someone to empathize with her. To hold her and cry with her when she felt like crying herself to sleep. Someone to be there, going through this awful time in her life every step of the way, some times full of hope, knowing there will be better days ahead, sometimes full of doubt, not knowing what the future will hold. If there's one thing you can take away from this blog, its that as a caregiver, this is your most important task.

What I can take away from this whole experience is this; I'm in love with the most inspiring, kind hearted, and bravest women I've ever met. I don't have all the answers. When you need help from friends or family, ask for it, and take the time for yourself. You're no good to anyone if you're completely stressed out. Cancer will try to take over both your lives. It's your job as a caregiver to keep reminding yourself, and your partner, that there is more to you than just being a cancer patient. Even though they can't control what they are having to go through, they can control how they go through it. Remind them that they are the same person they were before, only stronger. They may not be able to lead the life they once did, but the outside world will wait for them. That's a question that I do know the answer to.

Thursday, February 2, 2012

Sex, Drugs, and Stomach Rolls

I think that I kind of assumed that there was an end to having cancer, you often hear people say 'when this is all over...' but I am still waiting for it to be over. It's true, cancer is no longer the first thing that I think of when I wake up in the morning, it's more like the third, and I don't look 'sick' any more but when does it all stop? Where do I hand in my letter of resignation or who do I talk to about divorcing cancer (it would be safe to say that we have irreconcilable differences)?

As I write this, I have just gotten home from a night out with 'cancer friends' and although we don't only talk about cancer, it certainly does come up. Because of our age, fertility and sex are two topics that we discuss on a regular basis, especially because having sex with one breast isn't something that all your 'home girls' are necessarily going to be able to relate to. I'm not going to go into the sex part in great detail because I think some things need to remain private but I do want to discuss a few things about it.

It's not fair for me to talk about sex when it is something shared between Keith and I. My sex life is shared with someone else so for me to blog about it isn't something I am comfortable with. However, going back to the guilt entry from a few weeks ago, I feel very guilty about not addressing sex and sexuality in my blog because I don't turn red when I'm talking about it, I don't mind getting personal and I certainly never feel embarrassed about it but sex will always be that thing that I keep off my blog. I do however want to say that difficulties with sex after cancer are endless and it takes an incredible partner to stand by your side when you're one breast down, 30 lbs up, and have a head full of cancer thoughts.

Having gone out with a number of friends (some 'old', some 'new' but all 'cancer'), it's quite evident that sex is a hot topic and no one talks about it. It's not like your oncologist says 'Ok, so your latest imaging shows that you're cancer free, treatment is over, let's book your follow-up appointment, and, oh yeah, how's your sex life now that you don't have a breast, you're bald and you've just been through the scariest time of your life?' So, you kind of have to fend for yourself.

During chemo, you're pretty much poisonous (I had to flush the toilet twice after every time I went to the washroom for at least 6 days after each chemo just in case there was residue in the toilet bowl water that could come in contact with the next person to use to toilet) - people can't even pee after I do, who wants to have sex with me? Not to mention that you have no immune system so one little (vag) infection could land you in the hospital. You have to deal with issues like vaginal atrophy during and post-chemo (a tightening of the vagina that makes it, uh, impossible to have sex) and having sex when you're one breast down - not really the sexiest I've ever felt. Sex seems to be the last thing on your mind especially during chemo - 'No, seriously, that was the last time I'm gonna puke today. I'm ready, let's do this', yeah, I don't think so! I'm not sure why a social worker isn't assigned to you to discuss issues like this. I realize sex isn't a basic need but it sure is important in a relationship! Ok, I feel like I have already written too much about sex when I said I specifically wasn't going to write about it. I do want to say that Keith and I were very lucky to be referred to the proper resources and at the cost of providing way too much information, we 'got our groove back'.

I also wanted to discuss fertility. During the night out with the girls, so much was said about 'my doctor said...' and it all seemed to be conflicting information. Keith and I have decided to try to have children naturally, no hormones, no IVF, no nothing and if we aren't blessed with children, then it wasn't meant to be. If I believe that I got breast cancer for a reason then I have to believe that I will or will not have children for a reason too.

In order to harvest eggs, I would have had to have been pumped full of hormones prior to chemo (because I have a hormone based cancer, we didn't think it was a great idea to feed the beast prior to chemo) so we skipped that. Another option was a monthly shot that shut down my ovaries to protect them from chemo. We started asking questions about that and a lot of the answers were 'Well, we don't know the effects of..." and that just wasn't good enough either so, we said 'No' to that too. Every one is different but for me and Keith, we decided that we knew what would happen if I didn't take any drugs to protect myself (infertility) but we didn't know the effects of taking the drugs (not 100% guarantee of it working, potential negative effects on my fertility, cancer recurrence, long term effects, etc.) and yet a lot of women that I know who are in the child bearing years have taken these steps to protect themselves. It makes me wonder which doctors are telling which women which information? I don't know how many times something was said about fertility where another woman would say 'I didn't know that'.

It frustrates me because how do you know what questions to ask if you know nothing about a subject? When it comes to fertility, you are faced with so many options and some times you end up chosing the option that the doctor recommends even if it's not the right choice for you; you just become so overwhelmed. I got to the point where my doctor had written a prescription and I was one day away from filing it (because that's what she said we should do) and after doing my own research, Keith and I decided not to go through with it. I am thankful every day for the additional research we did and the decision we made. Fertility treatments seem to have so many unknowns that we just weren't ready to make a decision on a recommendation versus a necessity. Oh and by the way - I got 2 periods 28 days apart, it looks like some one is 'regular'. No big deal!!

So why did I write this entry? That's a great question, thanks for asking. I think it is in hopes of starting a dialogue, I think it is to let women know that although they may feel alone when it comes to having no sex-drive in their 20s and 30s, it is totally normal post-chemo, post-cancer, and I think it's to give a shout out to all the partners who patiently wait for us to 'get our groove back.'