Monday, September 26, 2011

Psychological Healing

It feels so good not to live my life in 3 week, chemo-based, increments anymore. I feel like I can plan a little for the future and not have to cram everything into two week periods before I'm laid up from chemo again. I am well into my Christmas shopping and planning my weekends in October and November without having to keep my bowel activity in mind.

I am still far from 'normal' but things are looking up. My hair is growing back and I've started using shampoo AND conditioner, my stupid armpit hair is growing back as well (too much information??), but my eyelashes and eyebrows are still MIA. I still get stared at but keep in mind, I'm 6 feet tall, queen size is an understatement, and I'm bald; people are going to stare. In the beginning, the staring didn't bother me because I was very conscience of being bald; I was checking myself out in a mirror every chance I got. But as I got used to my bald head and strangers continued to stare, I kind of got annoyed. I wanted to go over to them and say 'yes, it's cancer' but instead I just kept walking. It took me a while to realize that not everyone staring was doing it out of ignorance, I'm sure some were looking at me thinking of a loved one who had gone through chemo, and maybe others were thinking that I was brave leaving the house with my bald head uncovered.

Someone mentioned to me that I should go over to the gawkers and say, very seriously, 'do you have any questions?' and I loved the thought of that. Those who are ignorantly looking at me probably do have a lot of questions about cancer, and chemo, and being bald, etc. etc. etc. and wouldn't it be awesome to be able to answer those questions right on the spot (although, who would say 'yes, actually, I do have a few questions...'?).

Having cancer has made me re-evaluate my reaction to otherwise frustrating situations. When someone cuts you off on the way home maybe he was preoccupied because his doctor just told him he had cancer. When someone doesn't hold the door open for you when your hands are full, maybe that person is thinking about his/her daughter that's in chemo who he/she can't be with her every day. When someone screws up your morning coffee, maybe she is thinking about the lump she found this morning in the shower. If 1 in 3 people will have cancer, imagine how many people are affected by it. Maybe when people are staring at me, they are admiring the way I'm kicking ass.

Keith and I were talking about the day that I was diagnosed last night. He said that he remembers thinking about the long road that we had ahead of us and now look at where we are, I finished chemo and am starting to heal. I had a bit of a cry tonight as I looked back at the past 6 months. It's almost like when you're going through it, you don't realize the severity of it all but looking back it sets in a little bit. I think of those days that felt like years, the days that felt like no matter what I did, I was going to feel deflated and alone and 'sick' for the rest of my life; I can safely say, chemo was the scariest time of my life.

I have learned a lot that can't be understood unless you've gone through a cancer diagnosis/treatment and I think anyone who has been through it 'just gets it' and those who haven't 'just don't', and by 'just don't' I guess I should say 'just can't'. I was prepared for the physical reaction to chemo but not the psychological. If you know someone who is going through or has gone through cancer (the psychological healing is lifelong - it doesn't end when treatment ends) please call them or send them a card this week. Tell them that you are thinking about them and ask them if there is anything you can do for them. Better yet, just do something nice for them because the odds of them asking for anything is slim to none. Many times, I felt helpless and asking for help would have made me feel worse but having something nice done for me without having to ask felt so good.

I had many friends checking in on me throughout chemo and as I have said many times before, my support was incredible but there were many friends who called once or not at all. To be fair, many friends just don't/can't get it (how would they if they'd never been there) but having gone through it, if I can pass on any advice to those caregivers or friends of patients; let them know that you are thinking about them, let them know that you will be there from the day of diagnosis, to chemo graduation day, from the first doctor's appointment to the last day of Tamoxifen, from the first day without a breast to the last breath. I just think that if I wasn't warned about the psychological part of cancer, how can someone without cancer know about it?

I have recently joined Twitter (lovlykatielumps) and I am amazed at the network of (breast) cancer survivors that exist on this medium. It's not only amazing how many young women are affected by breast cancer but it blows me away how strong they are. It's like when the cancer/treatment made them physically weaker it made them mental/emotional stronger at the same time.

Women in their 20s with breast cancer is not a group I wanted to belong to however, now that I am a member, I am honoured to fight with these women (you know I'm talking about you two especially, Terri and Catherine).

Side Note - here is the link to the commercial that I was in for the Canadian Breast Cancer Foundation. and the password is 'katie'.

Thursday, September 15, 2011

My New 'Normal'

I did it, I have completed six treatments and survived the scariest adventure I've ever been on. I feel as though a huge chapter has just closed and now I wonder what I should write about. The past 4 months of entries have been kind of chemo driven and now I'm on the 'other side'.

I'm still dealing with some of the side effects of Friday's chemo; my bowels are still confused, my bones are sore and today the thrush is the worst its been, but the end is in sight. Next week will be the first week that I can focus on healing for the future, not just healing 'well enough' until my next chemo. I'm looking forward to going to see my co-workers, some friends, maybe going to a mall and just walking around (I was an avid shoppers prior to my diagnosis), oh, and getting a pedicure (I've only ever had 2 in my life but I was pretty annoyed to find out I couldn't get them while I was in chemo because of the risk of infection) and being involved in society again. I think every one around me is looking forward to having things go back to 'normal' because although I was the only one who had cancer, I wasn't the only one diagnosed.

Although I was the one physical enduring surgery, recovery, treatment and all the tests and procedures that come along with a cancer diagnosis, my family and friends endured a lot of the psychological side of cancer. Keith knows more about breast cancer than any 34 year old man should. Last night for example, he walked out of the bedroom (where I was laying down) and I started to cry because I was 'hurt'. By something he said? No. By something he did? No. Do I have any idea? No. I don't know if it is the chemo, the emotions that come along with cancer, or just being a woman but I was crying and I was hurt and I'll be damned if he was getting off the hook for it. He came back in the room, sat down beside me and frustratingly tried to figure out what he had done. We never solved the mystery and I realize on days like yesterday, how lucky I am to have him by my side. He has dealt with many different aspects of cancer and unfortunately has had to deal with the emotional girlfriend that he inherited on March 11th, too. I look forward to when "how are you feeling" is a question he asks during my pregnancy and not my chemo.

So now that six months have passed, and I have one less breast, 7 fewer lymph nodes, a whole lot less cancer, and a wealth of knowledge, what do I do? Well, medically, I see my oncologist on the fourth of October, I get set up with Hormone Replacement Therapy, ride the wave of those side effects, heal, and have my implant switcheroo surgery in December or January (oh, and fight the insurance company while I'm at it). And, mentally, I continue to surround myself with great people and keep the love and support close to my heart.

I would love to write a book, the same book that I was looking for when I was diagnosed; a book about cancer in your 20s, although no harder than cancer in your 50s, it's different. When I was first diagnosed, any literature devoted to breast cancer seemed to be geared towards women in their 50s or at the earliest 40s. I want to write about losing a breast in your 20s and when it's so much a part of your sexuality, fertility options and how we made our decision, about not having the option to breast feed if I am ever given the opportunity, about positivity and hope, about support and encouragement and how even the small things make a world of difference in the life of someone dealing with cancer. I have some pretty amazing friends who have done some pretty amazing things and I would love to pass on some stories and maybe be the positive person in someone else's life.

I have listed some of the incredible things that have been done for me in the past 6 months between Team Katie at the Relay for Life, the benefit that was thrown for me, and the family reunion where everyone wore pink in my honour, but one friend in particular has taught me so much about friendship and selflessness. I hadn't spoken to her in years but she was sure to have flowers waiting in my hospital room after surgery. She sent me cards, and constantly sent me words of encouragement along the way. She baked me cookies, and visited me while I was recovering. She has been that person who exemplifies 'that one person' who stands by you when you need it the most. One of her most recent 'acts' was an "Encouragement Jar" that has over 30 pieces of coloured paper folded up inside of it. Each piece has something written on it that has made me smile or cry, and has encouraged me along the way. One of the most recent ones said "Remember when we drove to Quebec and sang Little Mermaid songs the whole way? 'I wanna be where the people are...'" That made me smile, no, that made me laugh out loud. Others had inspirational quotes on them, while others are still unread as I know I will need encouragement along the way (even though it is so tempting to read them all at once). I want to pass some of her kindness onto others.

I would LOVE to be a motivational speaker. I don't know how you exactly apply for that job. Who do I send a resume to? Oh hi, my name is Katie, I've had cancer and was really positive during the whole process, would you like to fund a 'tour' across Canada so that I can talk to people/students/women about (life, cancer, education, motivation, encouragement, positivity, etc.)? None the less, I would love to do that...

So what is my new normal? I have no idea. I might be able to answer that in a couple of years. This next year is going to be a whole lot of firsts; first October without a breast, first Christmas post-cancer, first anniversary after my diagnosis, etc. and along with those firsts will come more lessons and more learning. As much as I would like to go back to my 'old normal', I'm kind of looking forward to my new one.

Thursday, September 8, 2011

Chemo Graduation Day

Tomorrow is the big day; chemo graduation day. I am less than 24 hours away from finishing chemo and I'm am a bundle of emotions. I am obviously excited because it is over. I will be really excited when my Neulasta shot is over too, that means no more needles in the stomach, yahoo!!!

I am nervous. For the past 6 months (it will be exactly 6 months on the 11th) all I've wanted is to spend less time in the hospital, not be under the constant care of doctors, to finish chemo, be free of monitoring and yet, it is that freedom that concerns me. At least for right now, if something isn't right, my continual blood test and constant monitoring will show it. I just wasn't expecting there to be this anxiety accompanying my last chemo treatment. I think I am starting to realize that cancer is a life long journey, no matter how long you've been cancer-free. I kind of feel like it's comparable to an alcoholic; regardless of if it's been 30 years since their last drink, they still consider themselves an alcoholic. I will just deal with the future as it comes, try not to over analyze EVERYTHING, and continue to accept support that everyone has so graciously given.

I also found out about Tamoxifen on Tuesday. About 5 weeks after my last treatment, I have to go back in and see my oncologist. I am given Tamoxifen for the next five years (one pill, daily). Cancer cells attract estrogen and Tamoxifen tricks cancer cells into thinking that Tamoxifen is actually estrogen. So the cancer cell can't develop and estrogen can't come in contact with the cancer cell either, because Tamoxifen is blocking any access. Although this is necessary, we won't be able to try to have children for at least five years, Tamoxifen can also negatively effect my baby maker, and side effects include further hot flashes, MORE WEIGHT GAIN, an increased chance of endometrial cancer (if my uterus lining builds up and doesn't shed its lining because of hormonal changes) and the potential of going through menopause at 27 years old. Mind you, there's no point in having a baby if I a) have cancer or b) am not healthy enough to take care of a baby.

Tomorrow also rounds off the 4th day in a row that I have been at the hospital (doctor's appointments, blood tests, and chemo). Today, I was at the Children's Hospital of Eastern Ontario (CHEO) for a consultation for genetics testing. I am being tested for the breast cancer gene. I got approved for testing because I had breast cancer under the age of 35. If the test comes back (in 4 months) that I do have the brca1 (breast cancer 1) or brca2 (breast cancer 2) gene, I have an increased chance of having ovarian cancer or it showing up in my left breast. I might have the choice to have my left breast removed and eventually (hopefully after I have 2 very healthy children) have a hysterectomy. What I found out today was, if I do have brca1 or brca2, there is a 50% chance of passing it on to my children. Girls' odds are different than boys', but if my daughter does inherit the gene from me, she has an 85% percent chance of developing breast cancer. Now, I'm way ahead of myself here, but isn't that something to think about? What would I do if my daughter had breast cancer at 26 and I knew there was not only a possibility of it happening but a likelihood of her getting it? On the other hand, look at how far they have come in the last 26 years with diagnostic tools, prevention, and treatment plans so who's to say what they will be able to do in another 2 and a half decades.

As I walked through the hospital today (I went alone as Keith had to work and my mom won't be here until tonight [she's coming for my graduation]), I saw many sick children but one in particular stood out. There was a little girl no older than my niece (4 years old) who had a head covering on and I could see that she had lost her hair. I'm assuming that she is currently in chemo. She was just sitting waiting with her dad, she wasn't crying, she wasn't complaining, she was just waiting. I wanted to go over and hug her because it has been challenging for me to go through cancer and chemo at 26, how has she done it at 4 or 5 years old? You want to talk about inspiration, look at this little girl; I got nothing on her. I actually had to pull myself together before I went into my appointment because I was a little overwhelmed. I wasn't sad, I was inspired. I have found it so easy to get so caught up with cancer and its effects like the potential of not having babies, going through chemo, being declined LTD coverage, etc. etc. etc. and here she is dealing with similar issues at 4 years old; an age when you should be worried about your very first day of school, and Justin Bieber, and playing dress up, not cancer, and chemo, and hospitals.

Seeing her and the other children in the waiting room brought me back to taking the tour of my cancer centre a week before chemo started and I remember being surprised by how many patients were there getting treatment, how many people have cancer; well, I had the same reaction today only tenfold. When you think about having a baby, the last thing you think about is spending their first 4 years of their life in a hospital, probably the same way my mom didn't think her daughter would have cancer in her twenties.

Having cancer in my twenties has however opened some doors that may have otherwise been closed. On Wednesday morning, I shot a commercial for the Canadian Breast Cancer Foundation. The target audience is ages 14-24 and because I was 26 when I was diagnosed, we are hoping that I appeal to them more than someone who is their mothers' age. The commercial will be on the CBCF website ( and on youtube and also at movie theaters starting in Saskatchewan. I will post a link once the final product is finished. It was such a great experience; the videographer and the studio owner were incredibly friendly and welcoming (they both donated their time and space for the cause). And I love feeling like I am making a difference. I know that this is what I was meant to do in life. I also have something else in the works that I will blog about soon. Now all I need to do is get a job using my schooling in education and applying it to cancer awareness and prevention in young women.

Finally, I want to say, to all the men and women who are just about to start your chemo treatments, be strong. I know what it's like looking at the future and knowing that it's filled of disappointment, compromise, challenges, puking, diarrhea, losing your hair, hospitals, needles, weight gain/loss, a sense of loss of control, and the unknown, but keep it mind that it's the support of others, the inner strength that you find when you don't think you have anything left inside of you, the determination that you will find when you decide that cancer is not going to make you a victim but instead of fighter, and the undying need to make cancer history that will get you through. I cannot believe that after tomorrow I will have finished chemo. It is not something I wanted to go through but I can't believe I did it. I'm not going to lie to you, I'm kind of proud of myself. I think about the scared girl who started treatment in May and I am so much stronger now, I am a different person, and as far as I'm concerned, as of tomorrow, I am cancer-free.

For those of you who don't know, on the last day of your chemo, you get to ring a bell that represents the end of treatment and the whole cancer centre claps and cheers you on. That's why my mom is coming up, to witness her baby graduate. I have been lucky enough to congratulate others on their last days, and cheer while others finish their treatment and all I can say is, 'what a feeling'. This blog entry has probably been the most emotional to write and I can imagine how emotional tomorrow will be. It is quite a milestone, again, a milestone I wish I didn't have to experience but none the less, a milestone that I've accomplished.

It is the end of one journey and the start of another. Although I will continue to need support from those around me, thank you for all the support that I have been given so far. I wouldn't be here without it.

Friday, September 2, 2011

Are You Covered?

Every website, piece of literature, or document devoted to cancer and cancer research that I can find says the key to beating cancer is early detection. In my case, financially, early detection is what hurt me. If I would have waited a little longer to go to the doctor, and let the cancer spread a little more, apparently, I would have been covered.

There are four positions at my place of employment that are covered for Long Term Disability (LTD) and I am lucky enough to have one of those positions. You must have been in the position for one year before you are eligible for coverage. The coverage is for 50% of your wage so you're certainly not making money while on LTD but after sickness benefits runs out, LTD kind of picks up where you left off.

I considered myself very lucky to be able to go through a mastectomy and chemo and not have to work through it. I know many people do it (I'm not sure how) but it was very comforting to know that I wouldn't have to work and worry about throwing up at my desk, risking infection due to my immune system that has had the crap kicked out of it or falling asleep in my chair because of chemo.

I had been in my position for a year as of December 2010 and so when my diagnosis was March 11th, 2011, I knew that I was not only eligible but also qualified for LTD.

So, just to be clear, here are some dates;

Sept 2010 - family doctor found a lump
-assumed it was Fibroadenoma (my mom had it at about my age so it was a safe bet)
-ordered an ultrasound

October 2010 - had ultrasound done
- the film was blurry so a 2nd ultrasound was ordered

November 2010 - had ultrasound done
- showed mass (the same mass I could have shown you if I took off my bra)
- radiologist said "I'm 99% sure it's nothing but come back in 3 months so we can monitor it."
- 'Cancer' was never mentioned / nothing on the film indicated cancer

January 2011
- Saw a doctor for a consultation (it's procedure for anyone who has found a lump)
- (verbatim) She said 'Don't worry, you don't have cancer.'
- She said it was again, most likely fibroadenoma

February 2011 - Had the 3-month check-up ultrasound
- I also had a mammogram done
- At this point, they wanted to confirm that it was nothing so a biopsy was ordered

March 1 2011 - Biopsy was done

March 11 2011 - Diagnosis of Breast Cancer

March 19 2011
- Confronted the surgeon who said I didn't have cancer by saying I was given false hope and we need to be on the same page from here on in
- Told her that I wanted to trust her as she was the one doing the surgery and I would have resented her if I didn't confront her for saying I didn't have cancer
- She agreed, appreciated that I brought it up, and we moved on

So, I filled out all of the information for the insurance company which my oncologist charged $35 to fill out. I sent the forms away at the start of July to ensure that there wouldn't be any delay in payment. My sickness benefits ran out on July 23rd and so two weeks later my LTD was supposed to kick in.

I got a call mid-July from the insurance company asking a few questions about my diagnosis. I filled in all the blanks for the rep on the phone. After not too long, she explained that they were going to try to prove that it was a pre-existing condition and deny the claim.

WHAT? But I was diagnosed in March and I qualified in December?

She also asked if the side effects of my chemo were difficult to deal with and wondered if I had a good support system. What difference does that make? Does it help her to sleep at night if she knows that I have a good support system? I never found out what basis those questions had.

She also wanted to know my highest level of education because I not only had to prove that I am not capable to complete the job that I had when I left, but I have to prove that I can't do any job. Well, the last time I checked, there isn't a job out there that prefers you to both puke and poop your pants at the same time while trying work.

Anyway, after not hearing anything for a month, I called on last Wednesday and left a message asking for her to call me back. She called me on Thursday to tell me that I had been declined. So, even though there is no test that showed cancer prior to the biopsy in March (I'll even say the mammogram showed reason for concern in February), you are declining my claim because I had a pre-existing condition prior to my one year being up?

While I had her on the phone, I asked about the appeal process and she said the information would be sent to me along with the write up explaining the reason for it being declined. I also asked her for the legal department's contact information because if someone knew that I had cancer in September and withheld that information from me, and I am still going through chemo a year later then someone needs to be held accountable. The woman from the insurance company said that no one in particular said that I had cancer in September but because diagnostic tests were used, they are arguing that I had a pre-existing condition. Well, you can't have it both ways, you can't say that no one is willing to say that I had cancer prior to my diagnosis but you're declining my claim because I had a pre-existing condition called cancer.

She is saying because there was a lump that means that I had cancer. Why then did my surgeon say 'Don't worry you don't have cancer', and why then do women, who have biopsies on lumps that are benign, continue to be monitored? Because, benign lumps can turn into cancer. There is no proof that the lump was malignant in September. I had a pre-existing lump, I did not have a pre-existing condition. In September, they weren't looking for cancer (which they didn't find), they were looking for anything. I was given pamphlets on Fibroadenoma in January because that's what I was told I had.

I've had to go back through my journal to look up some dates for this entry. Keith was good enough to get me a journal in the very beginning so I could document my 'journey'. I found some entries where I commented on how lucky I was to have LTD and that I wouldn't have to go back to work too early and risk burning myself out or risk infection because my immune system just wasn't ready for me to be working again and yet look at the situation I'm in.

I still have another surgery ahead of me; it's for my implant, so I can have a right breast again. I know insurance companies don't care about things like that. They look at the bottom line, they look at loop holes and saving money, regardless of who suffers. What's frustrating is that insurance companies give an illusion of caring and taking care of their clients, they are supposed to be about families, and supposed to protect you when you need it.

The sad thing is, at most, I would get no more than $12000 over 5 or 6 months. It's not like this was for millions, and it will still be challenging to pay rent, and OSAP and groceries and bills; it was enough to keep us afloat. It was enough to keep me from going back to work too early. It was enough for us to not go into debt at 27 years old on top of having cancer.

Chemo graduation day is next Friday. I made it, as hard as that is to believe, I did it! All six treatments will be behind me as of Friday afternoon and then it will be time to heal. Unfortunately, I fear that I will have to return to work early because financially, we cannot afford to have one income for much longer.

I am waiting to find out about the appeal process (which I'm sure will take months) and will be somewhat costly and then I will take the next step. As my Dad said, "you only have so much fight in you, and you should be focusing on your fight with cancer not with insurance companies." Insurance companies get away with so much, and it always seems to be the honest guy who pays. I also want to be clear that it's not my place of employment who's to blame either, they have been great! They may want to reconsider their insurance company when the renewal for the contract comes up, but they have been great with me having time off and supporting me through this whole thing.

Before you pay another penny into your insurance, I'd make sure that you are covered for what you think you covered for.