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).


  1. A. I could steal this post (again) and put it on my blog. {except the child-bearing part. And my heart breaks for you when I read those words. I'm so very sorry}

    B. I am convinced that tamoxifen was created by the devil himself. I hate it. Just hate it. I really really hate it. More than I can convey through these words.

    C. If I never have a hot flash again it will be flipping soon. Of course, I know I will have a million of them still. :(

    D. I <3 you =)

  2. Brandie!! I wish you lived down the street so we could vent over coffee/tea/wine/shots/whatever we can get our hands on. I'm not gonna lie, I think we could really crank out some good venting sessions.

    Thank you yet again.

  3. Katie,
    You summed it up so beautifully. I feel like you read my mind and I am sure many other women reading this feel the same way. This month I have reached my four year anniversary and while I can't say that cancer isn't part of my life (I did choose to immerse myself in that world with my company, Cancer Be Glammed) -- but on a personal level, as the days and years go's stranglehold has lessened and I hope you will find that happens for you. Yes, I still have my double mastectomy scars, (no reconstruction yet), aching joints from Aromasin, 20 extra pounds from chemo-pause... but I am here. And I will take it all...for that.
    I wish you better days ahead,
    Lisa Lurie

    1. Thank you Lisa.

      I think sometimes I just get a little 'cancered-out'. Sometimes everything seems to catch up with me and although 99% of the time, I feel like I am dealing with every thing like a rockstar, that damn 1% really breaks me down.

      Thank you for your words of 'me too', they always make me feel better when coming from another survivor.