Thursday, July 28, 2011

Worry, and Panic, and Fear, Oh My!

I was waiting for a bus last night after having dinner with friends. As the cars drove by, I thought to myself 'If a car were to run off the road and hit me, all of my hard word since March will have been for nothing and will be wasted on a car accident.' That thought led to another; I wondered if my life's ending was predetermined. Will I die at 45? Is cancer at a young age a recipe for an early death? I'm not afraid of dying due to this cancer diagnosis but now that I've had cancer I have an increased chance of getting it again. I'm worried that next time it won't be detected as early, next time the lump will be more internal than my breast, next time it will be cancer of the blood or the brain or the lungs. Once I hit 30 will I wonder if I'll see 40? If I am able to have children after my ovaries take this beating from the chemo, will my kids be motherless before their tenth birthdays? Will Keith be a widower before he's 50?

On weeks that are not filled with nausea, vomiting, anxiety and needles, I seem to over think the future. I've said this a number of times, 'Tomorrow I could get hit by a bus...'. But if I don't, the odds are great that my cause of death will be cancer, it's just a matter of when and what kind.

I'm not trying to be a downer, I just never realized the worry, the never ending fear, and the continual questions that one has once they've been diagnosed.

I have a new found respect for Jack Layton, not as a leader but as a cancer survivor. The horror of a second diagnosis must be immense and potentially worse than the first. The first time you hear 'you have cancer' the fear of the unknown is what is so overwhelmingly unmanageable but hearing it for the second time, you unfortunately know exactly what to expect.

I'm assuming that my obsession with cancer will lessen and at 26, as I prepare for my fourth (and what was supposed to be final until test results showed the aggressiveness of the cancer and it got changed to six) treatment tomorrow, it's hard to imagine my life as a retiree or grandmother or the recipient of the senior's discount.

I can't stop living because I'm nervous about dying. Cancer isn't the death sentence that it used to be either. I've heard so many stories of hope and determination, stories of survival and strength. But, sometimes I get so overwhelmed with stats, facts and suffering that the thought of losing this fight is consuming.

As I said, tomorrow is treatment #4 and I spend today trying to mentally prepare myself. We went shopping today for water and Gatorade so I can try to flush out the chemo as quickly as possible. Yesterday, I saw my oncologist who said that Taxotere (the name of the chemo cocktail that will be administered for treatments 4-6) is easier than the first 3 treatments (called FEC) when it comes to nausea. The new side effects include, water retention, increased chance of an allergic reaction to the drug, thrush and mouth sores, a chance of nausea and vomiting, your finger and toe nails can crack down the center, bone pain (like arthritis in my knees isn't enough), numbness in your fingers and toes, fatigue, hair loss (too late), diarrhea, and the list goes on and on...

I am in good spirits. I don't consume myself with the thought of dying and the 'when' too much but sometimes when those thoughts start, I find them hard to stop. Your mind is a powerful thing. I'm writing this entry because I'm not sure of the next time I'll be able to write. I'm also not trying to 'freak' anyone out by writing these thoughts either. If I've learned one thing about having cancer, it's that if I've had these thoughts, others have had these thoughts and being validated for how I feel, for me anyway, has been extremely satisfying.

Good luck to all of you who are currently going through treatment.

P.S. I got my last saline injection into my expander. So 'YEAH!' for no more needles in the chest and "YEAH!" for kind of having a breast again. I go for surgery in January to get my expander switched for my implant. I did it!

Wednesday, July 20, 2011

The ABCs of Breast Cancer Treatment; Before You Get Started

This week has been great! I try to take advantage of the days when I feel good by getting out and about. I am trapped in the house during the week following chemo so I try to do as much as I possible can (including taking the odd nap here and there) on non-chemo weeks. I spent the week with my mom and got to see friends and family that I don't get to see when we head home for the weekend (we're usually only home for less than 48 hours). I also didn't have any doctor's appointments this week so I could leave the city without any worry. Keith met me on Friday to spend the weekend at home.

Saturday night was the benefit. What an incredible night! I saw people that I haven't seen since high school (8 years ago). I had family, friends, friends of friends, friends of family and everyone in between there. I didn't sit down once in the 5 hour duration of the dance and was constantly talking to someone. There were raffle prizes so generously donated, there was a silent auction for, again, generously donated prizes, a live band, and there was a 50/50 draw. There was so much support in one room. I got up for the last song of the night and sang beside my brother at the same mic. The song? 'With a little help from my friends' by Joe Cocker, I really appreciated the band learning it. I had my camera with me and as the song was ending, I took pictures of the crowd. It is something I will never forget.

I got up to thank everyone half way through the night and all of a sudden the words 'thank you' seemed insignificant, they seemed to lose all meaning. How do you thank so many people for coming together when you are in a situation where asking for help seems weak but when you need help more than ever before in your life? How do you thank people who are having babies, getting married, buying houses (all in a poor economy) for digging into their pockets to help you out when they have so many of their own costs? How do you say thank you to the girl who took so much time, energy, care, and love and put it into a night to honour you when you needed her the most? Julie, there are no words for how I felt last night. For everyone who came out and showed your support and generosity, please accept my sincere and genuine gratitude. Thank you for not making me have to face this alone.

This coming week I have a doctor's appointment on Tuesday with my plastic surgeon. He will tell me if I need another saline injection into my expander. Based on my expertise (or pure guessing), I think I need one more injection. I haven't had one in about a month and the thought of that huge needle going into my chest makes me want to throw up so let's move on. For those of you contemplating getting an expander, please know that the injections DO NOT HURT, I just have a severe phobia of needles and I react the same way to a needle in my chest as I do to a blood test.

I have to see my oncologist on Wednesday. She will fill me in on the new cocktail that will be administered for the next three treatments. I have to start taking the steroids the day before the next three chemo treatments instead of the day of. I'm a little nervous about #4 considering that I have read about 2 women who were allergic to Taxotere, one of which almost died. As I have said before, worrying about it isn't going to change anything, so I am trying to focus my energy in other places.

After my appointment, I have to get blood drawn to make sure my body is ready for another beating. Thursday is free from appointments and Friday is my next treatment. Keith has 4 days off over the long weekend and they will be spent inside with me, trying to take away the pain, nausea, and overall discomfort of chemo.

At the benefit, I was thinking 'all these people are here tonight because I have cancer.' I often think about how much my life has changed over the past 4 and a half months, how little I knew about cancer and cancer treatment. I think about how much my life has changed physically but also emotionally (which I was in no way prepared for) and I wish there had been some manual to explain some of the important steps to take prior to starting treatment (including surgery).

I have found that people have given me gifts by using their strengths and talents to the best of their ability. I have had people use humour to brighten my day, I have had friends cook me meals, where as others put together a box of 'treasures' that will help me during 'tough days' and 'days when I need a treat' and 'days when I need to vent' (thanks Liz), and others use their party planning skills to throw a benefit in my honour (thanks Julie). One of my strengths right now is having a blog at my disposal and although I can't help others the way I hopefully can once treatment is over, I thought I would include some items that I would have found helpful prior to surgery and chemo. Some of these are things that no doctor told me and I had to learn on my own while others were posted on websites and in books. I hope these tips make it even a little easier to deal with the life long side effects of cancer.

Losing a breast takes some time to absorb, accept and then cope with. I'm not sure if there was anything that could have prepared me. I think I was just so excited to have the cancer cut out of my body that I didn't care what I looked like after. I think there should be more psychological 'help' prior to surgery. I also don't think I was warned about the scarring; it doesn't really bother me but there is a lot of it and I could see how someone could really be affected by it.

You lose all sensation in your breasts. Both the reconstructed side and the expander side are numb. I was not prepared for that considering I had only ever had surgery on my tonsils prior to the mastectomy. Again, I didn't feel like I was warned. I was ready for the reconstruction but not ready for the side effects of it.

Go to the dentist and get a check-up pre-chemo. You cannot have work done on your teeth during chemo because of the risk of infection. Make sure you tell your dentist that you are about to start treatment and he will give you tips on brushing, as well as some sample-sized alcohol free mouth wash, and other helpful tools that are required during treatment.

Get a pap test. Chemo affects all of your cells so if there is a change in your vaginal cells during chemo, it is best to have a baseline to refer back to if there is something wrong.

Keith's aunt said she heard chemo being described as having an IV drip of concrete going through your body and that is pretty accurate. So, drink lots and lots of water even when you think you're going to throw up, try to get it into you so you can get the chemo out of you. I personally find drinking it with a straw makes it easier.

You lose the hair in your nose too. Be prepared to have a runny nose for the duration of your chemo.

There is a misconception that you lose weight while doing chemo. Between the cocktail, the steroids, the willingness to eat anything that doesn't make you want to throw up (including Kraft Dinner, Doritos, potatoes, and any other kind of carb.) and the lack of exercise; the average woman going through chemo for breast cancer gains between 10-35lbs. Isn't that an added little bonus?

Chemo kicks you into early menopause and you may stay there for the rest of your life. If you are of reproductive age, you may want to visit a fertility doctor. I did and was given some options. Unfortunately, fertility treatments for women going through chemo seems to be highly understudied and the thought of pumping hormones into my body that already had a hormone based cancer in it just wasn't an option for Keith or me. They also gave us an option to give me an injection that was supposed to shut down my ovaries before chemo could damage them. After researching that option, we decided that there weren't enough studies done that showed the safety or the efficiency of that drug either. We decided that we knew the side effects of chemo and the potential of not being able to have a baby but the potential side effects of the fertility drugs were too vast and unknown for us. I am still glad we went and discussedthe options. If anything, ask as many questions as you can. I felt like if we hadn't asked the questions, we may have been talked into or led down a path that we are now glad we didn't go down.

I think the number one thing that I wish I had been prepared for is the psychological aspect to cancer that you rarely hear about. The amount of energy and emotion that is required when you have cancer, the amount of time that is spent thinking about the future and what it'll bring as well as thinking about the past and the potential regrets or changes that you may have made knowing that cancer was in your future is immense. There is a lot of envy towards other people who don't have cancer and a lot of fear that you'll get it again. I had no idea that an hour couldn't go by without thinking about cancer (either by rubbing your bald head or feeling the nerve endings in your numb breast). I'm so thankful that my medical team have treated the cancer but I really believe that there should be someone who treats the patient on your cancer treatment team.

These are all things that other cancer patients shared with me or that I had to find through my own research. I hope this helps a little with both understanding what cancer patients are faced with as well as what needs to be done prior to beginning treatment.

Tuesday, July 12, 2011

53 Days & Counting

I haven't posted anything for a few weeks because I was in a really bad place last week. I couldn't see the good side of anything and I was incredibly emotional. I didn't want to publish anything at that point, not because I didn't want anyone to know that I was feeling like that but because I wanted to be on 'the other side' of the negativity before I wrote about it. Acknowledging it is different than dwelling on it.

In March, before I even had surgery, a friend of mine that I have known for 22 of my 26 years called and said she was throwing a benefit for me. I think I had known that I had cancer for only 13 days and she was already planning a benefit. I hadn't even bought a mastectomy bra yet and she was already planning! That benefit is this weekend and I will never be able to repay her for what she has done. INCREDIBLE! Not too long after that, a group of 4 or 5 bands were asked to play at a local hall to expose the 'young crowd' to this particular venue. I was still recovering from surgery so I didn't go but I had many friends who did. The next day, one of the band members dropped off an envelop to one of my friends for me. The bands decided that instead of getting paid for playing that night, they would donate the money to me because I wasn't working. AMAZING. This past Saturday, on Facebook, I noticed that a co-worker had thanked a few people from work for their efforts with a 50/50 draw and a bake sale. I made a comment that I was jealous that I missed a bake sale at work to find out that the proceeds of the bake sale and 50/50 draw were for me. UNREAL! Yesterday, we had a family reunion for Keith's mom's side. I walked into the back yard where everyone (and I mean everyone) was wearing a pink shirt. Keith's entire family wore pink to their family reunion to show their support for me. I felt like I was in a movie, it was one of the most thoughtful things anyone (or entire group) has ever done for me. FAMILY!

For the past week, it has been so easy to feel sorry for myself. It has been so easy to worry and cry and ENVY the lives of my other 26 year old friends. It has been so easy for me to want to have ANY other life. When I look back at what people have done for me, I realize how hard it is going to be to ever repay any of these people. Maybe the most amazing part is that none of these people want thanks, they are thankful that they can help. I have no way of expressing my gratitude for coming together and doing things that I only hope that I would do for them if roles were reversed.
I'm half way through. I've made it through 3 chemo treatments and have 3 to go. This one wasn't as bad as the last one when it comes to the puking, the anxiety, the restlessness, and the overall nausea. I got a refill of 2 of my anti-nausea meds this time and didn't end up on an IV drip.

In saying that, and at the cost of being Debbie Downer, being half way through means that I have to do what I've already done, all over again. This treatment played a bit of a psychological game with me. On Wednesday, things set in a bit. I have cancer! It still seems like I am lying when I say that, but it's true, I'm 26 and have cancer. Yep, it could be worse. I could be four years old and have cancer, it could be terminal, it could have spread to more of my lymph nodes, so I am thankful but some days it's pretty consuming. Some days, I worry about the next day and the nausea and other days I worry about getting through the next 53 days of chemo while other days I worry about getting cancer again before I'm 30.

The 13th was my oldest brother's birthday. I got out a 'Happy birthday' on the phone and it only took a 'How are you?' from him before I was crying. He's four hours away, having his birthday dinner and I'm by myself, apologizing for crying about cancer on his birthday. The week following chemo is not one of positivity or inspiration. It is a week of being weak, fragile, emotional, down, and fearful. I have come to expect that now. I wake up and spend my day waiting to go to bed. I want the days to end so the next one can start and I feel this way for about a week post-chemo. I look forward to helping others in the future, I look forward to being someone who can be there for others when they are facing cancer alone, but currently, I look forward to not waking up thinking about cancer, not having to contemplate leaving the house because of nausea, not worrying about being bald. Like a wise woman said to me recently, 'this will all be a memory one day' and I try to tell myself that every day. Some days I wonder though, 'Is this as good as it gets? Is there life beyond cancer?"

I envy the days when I worried about other things than having my PICC line dressing changed, when my next doctor's appointment is, and cancer ruling my life. I expect people to ask how I am feeling every time I see them but boy, do I miss the days when people asked about me and not my cancer. I have watched A LOT of television in the past week; a lot of reality garbage (L.A. this, and Beverly Hills that). I look at these women who are 'so stressed' because their new fragrance isn't going to have the right shaped bottle or one of their sister's got pregnant before they did. I wonder what these women would do if they had cancer.

I think I better understand the expression 'alone in a crowd' than I ever have before. I have so many people around me who care for me, who send me love, positivity and prayers and I can safely say, I'm honestly not sure if I've ever felt so alone. I got out of the shower the other night and laid in bed for about 25 minutes just thinking. I just stared at the wall thinking 'I have cancer, I've had a mastectomy (mastectomy, like chemo, is no longer just a word once you've gone through it), I feel sick because of the cocktail that is flowing through my veins, I'm having increased hot flashes, and I'm 26'. No one can understand what it's like unless they've been through it, understandably, but do I ever feel too young to deal with this. I can imagine that at 62, I would also feel too young to deal with cancer.

I think I am past the point where I wonder why I got cancer. It could be from genetics, medication (including birth control), environment, diet, or a mixture of any of them. I will never know so I try not to focus on it. Mind you, every time I microwave something, I wonder if I am increasing my chances for reoccurence. Every time I drink out of the tap, I wonder what I'm drinking that I can't see. And then every now and again, I'm able to form the thought, 'You could also get hit by a bus tomorrow. Quit worrying and keep living.' It's like I'm continually arguing with myself. I can worry about getting cancer again by the age of 30 and die of old age or I can attempt living in the moment and see where that leads me. Worrying isn't going to prevent cancer from coming back. I say that and I'm not sure who I'm trying to convince, me or you.

I try to allow myself some 'down' days without feeling too much guilt otherwise I would go crazy. Sometimes, I fear that I am worrying others when I tell them I am scared about dying from cancer, when I say I don't want to have cancer twice before the age of 30, when the thought of going through chemo again or having my left breast removed deflates me of every ounce of hope that I have.

I wanted to keep the illusion alive that I was positive all the time, and that even though it's tough, with a great support system you can get through anything. After talking with Keith's aunt and cousin and the importance of being authentic, I decided it was important to write about both sides of the coin. Yes, I have been very lucky and have learned more than I thought possible but that doesn't mean that chemo is any easier or the nausea is any less. I'm sure I'm not the first person to face these obstacles or feel defeated so why not write about them? Thank you to everyone who has gotten me through my awful weeks of chemo; chemo will soon be a memory but you will be with me forever. I continue to fight the effects and look forward to my chemo graduation day (53 days and counting).

Sunday, July 3, 2011

My Top 10

Why Cancer is Cramping My Style!

The Lack of Sleep
Sleeping is a bit different than it was pre-cancer. My PICC line just straight up grosses me out, so no laying on my left side. My implant is on my right side, and yep, you guessed it, it grosses me out too. And let's not forget about the potential for Lymphedema.

A little lesson on Lymphedema...
It's a condition that occurs when fluid builds up in an area of your body where lymph nodes have been removed. When the fluid, in my case, in my right arm, has no where to go because there are fewer lymph nodes to 'filter', it swells. Because of this risk, I can never have my blood drawn from, have an injection into, or have my blood pressure taken from my right arm ever again. While I attempt to sleep, all I can think about is, "don't fall asleep on that side, you'll cut off circulation and you'll get Lymphedema." Irrational? Yes! True Katie style? Absolutely!

Lying on my stomach is out of the question because when you don't feel good, usually your stomach is a last resort (please note that 6 months ago, I was a stomach sleeper and I miss those days terribly) and the implant doesn't allow for much stomach laying either. So I'm left with laying on my back. Needless to say, I miss sleeping.

Looking Sick
I've heard my mom use the term 'ill' to describe me having cancer and 'ill' is always more serious than 'sick.' She's right though, I am 'ill'. However, just because I'm sick doesn't mean I want to look sick. Being bald is the dead give-away. I guess it's also probably quite clear that I have breast cancer when I accost young women asking when their last breast exam was.

The Chance of Infertility
What do I say about infertility? I cried more about the potential of not having a baby than having cancer. I just can't be infertile after all of this is said and done. Actually, I had Keith give his boys a pep talk before my last chemo at the same time as I was having a chat with my ovaries, just in case. I wanted his troops to have a heads up of what they were dealing with, to prepare them for the potential long road ahead when the time comes to start trying. Keith and I collectively had a chat with the IV bag of cyclophosphamide prior to being hooked up to it. We explained that we are on the same cancer-killing side and pleaded with it to focus on the cancer cells and spare the ovaries. Again, here's hoping it worked. On a positive note, a friend of mine told me about a friend of hers who was in a similar situation as me and she is now pregnant with her first child (they are appropriately naming her 'Hope').

Being the Reason for Others' Tears

There are few things worse than being the reason that someone else is crying. I have been the source of pain for so many close to me. I don't hold any guilt about it, because there's nothing I can do and I had no choice in the matter but it still feels awful. It's a very strange feeling when someone says, teary eyed and all, "I'll pray for you." It's weird to be in a situation at 26, well, at any age, where someone feels they need to ask God to help you. I appreciate it very much, even if it did take some getting used to and if I do say so myself, I think He is doing a great job.

Having Uneven Boobs
For the time being, righty is unnaturally perky while lefty is more 'mid-teens' perky. The surgeon has to over inflate the expander (with saline injections), which is behind the muscle wall, to stretch it. That way, once the implant is in, the breast will drop a little and have a more natural look to it. Right now though, I carry a level in my back pocket and ask Keith for a quick alignment check every now and again. A regular grocery store visit doesn't really phase me but I try to level the ladies out for a wedding or a nice outing. Who am I kidding, we don't go to nice outings; I'm as uneven as a the leaning tower of Pisa, all the time.

Pulling Out My PICC Line
My skin is very sensitive and the bandage they use to cover the PICC line irritates my skin. I try to have the big bandage off before the nurse gets here because when they remove it, it's like taking a bandage off a piece of paper; my skin just rips. Last Friday, I did everything the way I had been doing it and before I knew it, the PICC line was exposed 20 cm instead of 7cm. I was so upset because it could have been prevented and it was my own fault. I get my new one in an hour before my next chemo (this Friday).

The Cost of Meds
Without Keith's benefits and something called the Victory Program (a program that pays for a portion of an injection that I need after each treatment), my meds post-chemo would cost $3000 per treatment - so total of almost $18000. Isn't that criminal? Out of pocket, I end up paying about $30. What would I do if I didn't have benefits?

*Side Note - Parking has also cost over $400 (benefits do not cover parking, ha, unfortunately).

I had my second treatment and it was a doozy. I had nausea, vomiting, no sleep, lots of crying, lots of crying, and, uh, lots of crying. I was so anxious and I couldn't tell you about what. My anxiety and restlessness was taking over, I couldn't lay down, I couldn't stand up, I was hot, I was cold, it didn't matter, whatever I was supposed to be doing, I couldn't do it. I found out on the Wednesday after that one of my anti-nausea pills that I was taking every 4 hours, has been known to cause anxiety - BINGO! So, I stopped taking those meds and moved onto an IV drip at home (thank you PICC line) and have felt better since. I was on the drip for 48 hours until I pulled the PICC out (unintentionally). The meds in the drip also cause anxiety and restlessness but nothing compared to the shit I was going through earlier in the week.

Continual Hair Loss
I thought shaving my head was the right thing to do, and I'm still not convinced that it wasn't. But your hair doesn't just let go and fall out one day, you kind of have to pull it and I have very little to pull. I was told not to shave it with a razor because it irritate the follicles and it will grow back in patches. So, it's just falling out all willy-nilly and my pillow (and 3 daily shirts) are covered in hair. Imagine taking a brush with real hair bristles, holding it above your head, and cutting the bristles so they fall down your shirt. Do that 19 times a day and you'll know what I mean.

OSAP Payments
Apparently, I make too much money on E.I. hahahahahahahahahahahahahahahahahahahahahahahahahahahahahaha. Ok, I'm done.
Anyway, because Keith works full-time (and although he wasn't part of my life when I accrued my massive OSAP tab nor is he paying any of it back) we make too much combined and so I have to pay over $450 a month to OSAP. They knocked off about $100 a month because I'm not currently working. Wasn't that thoughful? I certainly never expected to have breast cancer at the same time as paying back my OSAP.

Well, that completes my Top 10 but in no way is this intended to be a complete list and to be honest, I could make a list of my top 1000 reasons that cancer is cramping my style but I thought I would limit it to 10. I could have added my fear of needles to my top 10 because it has been the cause of many tears and lots of anxiety. The number of needles I have needed since March is at 14 because my PICC line has saved me from an additional 7 (3 IVs, 3 blood tests, and a bone scan) so the inconvenience and pain from the PICC line is worth it.
I plan on making another list in about 6 months to see how my focus has changed. Hopefully, infertility and OSAP payments are off the list in the next 3 and 10 years, respectively, and chemo will be off the list in 68 days, but who's counting? I'm sure there are other issues that would make others' Top 10 lists, so please feel free to add them in the comment section below.