My Ship is Sinking.

October. This month is difficult for me. It's my diagnoses month, plus it's, you guessed it, Breast Cancer Awareness month. I'm sure none of you have noticed. I can't imagine the sea of pink ribbons and all the advertisements gave it away. "If you buy this *insert some unnecessary pink merchandise*, a portion of the proceeds goes to support breast cancer awareness". Although pink is pretty, and just so happens to be my favorite color, it doesn't even begin to encompass what the true meaning of breast cancer awareness (education) month should be. Sure, it's great for mass marketing because everyone knows what a pink ribbon stands for, but does it really serve it's purpose anymore? In case you didn't know...

The Original Breast Cancer Ribbon

Charlotte Hayley, who had battled breast cancer, introduced the concept of a peach coloured breast cancer awareness ribbon. She attached them to cards saying, "The National Cancer Institute's annual budget is 1.8 billion US dollars, and only 5 percent goes to cancer prevention. Help us wake up our legislators and America by wearing this ribbon."

Haley was strictly grassroots, handing the cards out at the local supermarket and writing prominent women, everyone from former First Ladies to Dear Abby. Her message spread by word of mouth. Haley distributed thousands of these cards.

The peach colored ribbon of Hayley aroused interest from Alexandra Penney, editor in chief of Self magazine, who was working on Self magazine's 1992 National Breast Cancer Awareness Month issue. She saw the initiative to adapt to Hayley's idea by working with her. But Hayley rejected the offer saying that Self's initiative was too commercial.

And yet we're there. Too commercial. Susan G. Komen, the first to initiate the pink ribbon movement after Charlotte refused to give anyone permission to use the color peach. She recognized all these other companies had one agenda, promoting their product, not preventing breast cancer. Susan G. Komen spends a great deal of the money on publicity, or what they call 'Public Health Education' (aka - shirts, hats, screening awareness, etc.), administrative costs and fund-raising costs. Not toward actual research to find a cure. Don't get me wrong, prevention is important, but 40% of all breast cancers are diagnosed by self breast exams. Screenings and mammograms only detect breast cancer, and even in some cases don't - like mine, and they definitely don't END breast cancer. There really needs to be more money going toward research to end this menacing disease, but that won't happen until we all fight for change because let's face it, not even the NFL will save us. 108 people will still die today. I'm sure they all got a mammogram though.

Aside from the overly obnoxious pink campaign that is constantly staring me in the face reminding me of my still recent battle scars, this month I will find out if my back pain is, well, cancer. I've been experiencing back pain for the last month and a half, and to say I've been a wreck over it is an understatement. Granted I started working out at the YMCA in August, ran 8.6 miles the beginning of September and continue to run, and do yoga once a week. At this point, torn muscles, pinched nerves, a compressed vertebra, fracture, or a slipped disc are all very likely scenarios, but that's not where my mind goes. It goes to a very, very dark, lonely, scary place. Cancer. I can't even begin to describe the fear, and anxiety of having my cancer recur.

There's a hole on deck and my ship is sinking fast. Someone throw me a life preserver.

The Wreckage

I might be depressed. I don’t know what depression feels like. I have a generalized concept of what it might look like, or how society views depression, but I’m guessing what it feels like is quite different. I also imagine it can present itself in very different ways. Most would not think I’m depressed. I’m eating, sleeping, going to work, and generally, I’m a happy person. I suppose my life could maybe be more fulfilling. I could have more money, a nicer car, a job I really love, be married, have kids, a nice house with a wrap-around porch, take vacations, be stress-free, but that’s not what my depression stems from. My depression = coping with cancer, and my future.

My acupuncturist says I’m grieving. Grieving? Grieving what? My life before cancer? That’s a given. Chemo ending? It’s quite possible. Chemo sucks but there’s this weird comfort in the routine of it and knowing that it’s (hopefully) kicking cancer’s ass, but now that it’s over, comes the wreckage. Not just physically, but also a huge eruption of emotional carnage.

Knock, knock. Who’s there? The aftermath of cancer.

There’s a huge difference between chemo and radiation, and not just procedurally. It seems like people line up to help you get through chemo, and then when it’s over, they’re gone. Don’t get me wrong, radiation is nothing anyone wants to hold your hand through, nor can anyone, but I think as a community there’s a perception that when someone makes it through chemo, they’re all good. Their hair grows back, they look good, or at least better, they’re going to work, but physical appearance isn’t everything. Especially when you’re dealing with cancer.  

There’s a huge emotional support gap when transitioning from chemo to radiation, and it’s not just family and friends. It’s within MSTI, too. I’m not going to the chemo suite every week anymore so I don’t get to chat with the nurses about how I’m doing. I don’t see my oncologist weekly anymore either so when I have concerns or questions they just seem to pile up. I feel like I really have to go out of my way to figure out who or what at MSTI is there to help me cope with all this BS. I see my radiation oncologist once a week. She checks my skin and then asks what kind of emotional support I’m getting. None. It’s the same. Every. Single. Week.

I talked with a social worker the other day. I guess a month after radiation I’m supposed to have a Survivorship Wellness Plan appointment when my doctors and I will plan the healthiest me there can be, and basically what the next 5 years will look like. Because, my doctors already know about my cancer and how it works, now it’s my turn. I have to plan how I can help myself, but really, a month after radiation? That doesn’t work for me so I requested my packet now. I started to read it. First page says, “Congratulations on finishing your cancer treatment.” Are you kidding me? Congratulations? It goes on to tell me to:

Eat a healthy diet, with a focus on plant foods

Limit alcohol consumption

Achieve and maintain a healthy weight

Be physically active

I’m truly educated now! Things I absolutely had no idea I should be doing, or wasn’t already doing prior to my diagnosis. I can totally move on now. Ugh.

No, what my depression, anxiety and sleepless nights come from is truly one of the scariest potential outcomes of early-stage breast cancer diagnoses. It’s known as the micrometastatic paradigm. This paradigm states that some patients with early-stage breast cancer have distant micrometastatic cancer present at the time of their initial diagnosis, putting them at risk for the later development of metastatic cancer. The statistics running rampant on the internet proclaim that 20%-30% of early-stage survivors (Stage I, II & III) will develop metastatic breast cancer in their life (Stage IV). Did you shit your pants after reading that? That’s one of my biggest anxiety triggers, and probably a reason I should stay off the internet.

Although I don’t know my specific statistic, even though I could ask my medical oncologist but I don’t out of fear, I do know I’m not even close to 20-30%. My radiation oncologist breaks it down for me like this on a scale from really good to really bad:

2cm tumor - in the middle

Aggressive, Invasive, Her2neu+ - bad

Clean lymph nodes - really good and in some ways triumphs some of the bad

The odds that a little bugger, as she refers to it, got out, are very slim for me, and if one did, the odds that the chemo took care of it are very high. Her personal opinion is that I was cured with surgery. She told me to look myself in the mirror every day and tell myself:

YOU DO NOT have a single cancer cell in your body.

You are you--YOU are GREATER than any statistic!

P.S. I saw a psychiatrist today. I’m not crazy. I’m not depressed. I just have anxiety, and I now have a plan to work through it. I was also told I don’t have Stage IV breast cancer so worrying about that isn’t particularly helping me. So there’s that. 

What's Left of Me?

My mammogram results today? Normal. But what's really normal anymore? 

A cancer diagnoses changes your life. Forever. Changes everything about you, and who you thought you were. How does one move forward with their life after that?

My health has become my full-time job, and will be for some time. That's hard. Really, really hard. It exhausts you. It's very taxing on your physical and emotional well-being, your work, your financial state. Your life in general. 

When do I get to live again? When do I get to be me again? Even then, what does post-cancer Danielle look like? I know I'm not the same person, but right now, I'm too exhausted to be any kind of person really. Will I ever feel normal again, or maybe, maybe things just become a new normal. A new normal defined by what having or having had cancer looks like. Our lives are very different from the norm.

I'm cancer free today, but the fight is far from over. I still have two more rounds of chemo, followed by six weeks of radiation, a year of hormone therapy and a multitude of check-ups, tests, scans and possibly long-term therapies/treatments for side effects I'm currently experiencing due to surgery, and chemo. Maybe more after radiation and hormone therapy. I have a follow-up thyroid ultrasound in the next week or so (hopefully nothing has changed). I start physical therapy on the 16th for my Axillary Web Syndrome, also known as cording, a side effect developed from having my lymph nodes removed. I will also have a consultation with a Gastroenterologist after chemo. Not to mention, chemo detox will take about 6-8 weeks. 

I imagine the next year will still be filled with many ups and downs, good days and bad days, happy days and sad days, and even the really, really sad, depressing days still. Life is truly one day at a time right now. It's measured by conquering one hurdle after the other. No real long-term goals or hopes or dreams. Not yet. I wonder when the day will come when I run out of hurdles though. When I can just live. I guess that's when I'll find what's left of me. 

The Nitty Gritty: Part II

Side effects. Seriously, I'm a hot mess.

I write this from my bathtub. My place of sanctuary and serenity. The only place I feel relaxed these days. Where I can collect my thoughts, forget my worries and just be me. Alone. All the pressures of the world, the need to be strong, fight through it and smile, take a back seat. Momentarily.

My body is no longer mine. No longer mine to do what I please with, to nourish or exercise how I want, or to take care of how I see fit. It's now a poisonous battlefield with tanks, mortars and landmines going off. Duck and cover!

In some ways, the "hard" stuff (Adriamycin & Cytoxan) was almost easier. Sure I had no energy and could barely stand some days, but that was predictable and fairly easy to manage. I just stayed in bed for almost 4 days, every other week. It did slightly drain the life out of me, and showed, but I was able to push through most days. Wrecked intestines? Fiery throat? Swollen gums? Bone pain? Night sweats? Decreased appetite? Most of it, completely manageable. My remedy plan included: Zofran, stool softener, natural vegetable laxative, Claritin (oddly for bone pain), queasy drops, peppermint tea, lots and lots of liquids, Biotene mouthwash and toothpaste, baking soda, salt and water mouth rinse every 2-3 hours. Done. It became routine. I learned quickly what to expect and had resources to help me manage the side effects. Plus, it was every two weeks so I felt like I had time to recoup before getting hit again.

Now, it' a crap shot. I have no idea how to manage my side effects. One of my biggest problems is the steroid I get on infusion days. Dexamethosone. My body hates it, or it hates me. Either way, it does some wicked stuff to me. Luckily, they have been able to drop the dosage for me from 20 mgs to 5 mgs, which has helped tremendously, but as the Taxol accumulates in my system, the more I'm having reactions to it that I'm unable to remedy. Itchy/burning/cracked eyes, severe bone pain/body aches/flu-like symptoms, rashes and constant nose bleeds. It's truly a mystery to me how your nasal passage can be so dry causing nose bleeds, but yet your nose still runs like a leaky faucet. I have, embarrassingly, left nasal drippings in many places these days. There's just no stopping it, especially when I bend over.

Let's see, what else is there:

Hair. The only hair left on my body is my arm hair, eyebrows and eyelashes which, don't get me wrong, I'm super thrilled about! I told them, "take the hair, not the eyelashes!" Even though I can't do anything with them since my eyelids feel like they're going to fall off most of the time. I might have one or two nose hairs left, but my head hair is starting to grow back. Soon, I might have to rock the semi-bald look full time. Stubble is not really conducive to scarf wearing, and it's getting too hot for hats.

My nails are wrecked. Cracked, brittle and disgusting.

Neuropathy. I haven't experienced it, at least not yet, and I hope I don't. I like having feeling in my fingers and toes and being able to button my pants, tie my shoes, and type this wonderful blog post. I'd like to keep it that way.

Night sweats. I think I'm finally done soaking the sheets. They're definitely not anywhere near as bad as they used to be when I was on AC. I mostly get them the days following chemo, like my body's trying to rid itself of the poisonous sludge.

Hot flashes. Batten down the hatches! They come with a vengeance, and boy, does this chicks head sweat.

Babies. Wouldn't even be an option for over a year when I'm done with the hormone therapy and that's if I don't go through menopause which, I pray every day doesn't happen. Living without kids I can deal with, but going through menopause at 31 is not anything I want to experience. I was told menopause can be temporary, just while going through chemo, or permanent. Really depends on age, egg supply, and how much damage is done to your eggs. I was sent to a fertility clinic a few weeks before chemo to consult about having my eggs frozen. It was too much emotionally and financially for me. I had just been tossed into a tornado and spit out the other side. Two weeks of giving myself IVF drugs was not something I was prepared to do for something that was not a guarantee. So, we will see what happens.

I can't think of any other glaring side effects to mention at this time. All-in-all, I guess I'm doing okay. At MSTI, they say I'm atypical and just sailing through. I'll take it, even though it still feels like there's a war raging inside my body.

The Nitty Gritty: Part I

I had high hopes for my blog and the intent to write a post after every round of chemo, but obviously, that's not going as planned. I've only had this post started for, oh...a few weeks now.

I'm just...TIRED. After every round of Adriamycin & Cytoxan (AC), I was busy getting through the side effects for about four days, just in time to go back to work the following week and then do it all over again the week after that. I had no energy for anything. I could barely walk down the stairs without feeling light-headed or like my legs were going to give out. Now, chemo is weekly and I feel really, really busy, which is tiring. My life went from a screeching halt to 50 mph. All because I have energy now, or at least more of it then I did. AC and Taxol are like night and day. I can go places and see people. I went to the kid's choir concert on Saturday, which I wouldn't have done on AC (by the way, super cute! They were awesome). I actually want to get up on the weekends and do things. Clean my house, go shopping, visit Dan and the kids, but it all might be a little too much, too soon. I might have to pump the brakes a little. I still have side effects, I still get tired quickly and small tasks still take a bit longer for me to.

Through this whole process, I get a lot of questions about how chemo feels, how I feel, what side effects I'm experiencing, what it's like, how long does it take, etc. So, here's the nitty gritty, as I call it. Part I, anyway.

My average visit at MSTI on infusion days for AC took five hours. Now it takes about four. My first Taxol/Herceptin day took six hours though. Infusion was slower to make sure I didn't have any initial side effects, but all was good so we go full speed now. Chemo days go as follows: wait...wait...port accessed, blood drawn, wait...wait...wait. Meet with my oncologist, Dr. Arteta, who talks to me about how things have been going, side effects, and let's me know if my blood counts are good enough to do chemo that day. Wait...wait...wait...wait. Go back to the chemo suite, pick a chair or bed, wait. Get assigned a nurse. Wait. Get IV. Wait. Get meds. Wait. Then finally, chemo, for two hours. Did I mention waiting??

Chemo infusions don't feel like anything. It's really the easy part. You're just hanging out. One of the worst parts of my day at MSTI, having my port accessed and flushed. I've given up on the lidocaine to numb my port before my visits. It's just messy and let's be honest, I keep forgetting to do it. The needle insertion really isn't that bad though. You take a deep breathe in on the count of 3 and it's done, so I don't bother with numbing it anymore. Although, my very first infusion was the day after I got my port in. Talk about unpleasant! Made my eyes water, and then mom cried. I guess moms still don't like to see their babies in pain even at 31. Having my port flushed is just plain awful. The smell/taste hits you like a ton of bricks. It's a weird, metallic-y taste. Makes you gag and lingers for awhile. Just writing this made me cringe. I have the pleasure of getting that done three times during each of my visits.

The second worst part, stressing about my blood test results. I get so nervous, and sweaty, waiting to meet with Dr. Arteta and wondering what he's going to tell me. Two weeks ago, he nonchalantly told me my hemoglobin was low, 9.8 - normal for females is 12, but I wouldn't need a blood transfusion unless it drops below 7. Uh, what?!? Nobody mentioned blood transfusions. What's next? Thank goodness my echocardiogram was good though! I was super nervous. I will be having routine echos because of the Herceptin drug I'm receiving. Herceptin can damage the heart, the risk ranges from about 5% to 30%, which I've been told is a less common side effect, especially since I'm young, but it's still worrisome. Being young didn't stop cancer so at this point I can't rule anything out. Just more stuff to stress over.

       Side note: I don't think I mentioned breast cancer hormone receptors. When you have a biopsy and a lumpectomy, your cells are tested for hormone receptors: estrogen, progesterone, and HER2neu. Hormone receptors are proteins found in breast cells that pick up hormone signals telling the cells to grow. If you test positive for one of them, it helps determine whether the cancer is likely to respond to hormonal therapy or other treatments. Hormone therapy medications can lower the amount of the hormone in your body or block the hormone supporting the growth of cancer cells. If cells are positive for hormone receptors, then certain medications could help to slow or even stop their growth. I tested positive for HER2neu, which is why I am taking the anti-body drug Herceptin. If cancer cells are hormone receptor negative, then hormone therapy is unlikely to work. Being negative for all three is called 'triple negative' and pretty scary. Women who are triple negative don't have the option of hormone therapy, only chemo and radiation.

Although my situtation has lots of positives, stage I being the biggest and the fact that my 'insurance policy' plan has a curable rate of over 95%, every little thing I'm doing to my body, chemo, hormone therapy meds, radiation, MRI's, have their own percentage of variable outcomes and side effects, some long-term. One of them, I'm sure you can guess, is CANCER. So, although I feel extremely lucky and blessed, it doesn't negate the fact that it's all still pretty scary shit some days. Everyone tells me how strong I am and how beautiful my spirit is and to keep similing. For the most part, I'm okay. I get up, go to work, live my life, and smile...a lot, but some days behind all that strength, are really crappy days. I cry. I stress. I worry, but I keep fighting. I fight not only for myself, but for those that no longer can. For those that didn't get the chance like I do.