Friday, December 30, 2011

Chain Reaction

When I found out I have cancer, I didn't realize how open people would be with their reaction to my reaction: I'm too casual. I'm too sarcastic. I'm not emotional enough. I didn't realize that cancer meant I had to react in a particular way. I didn't realize getting cancer meant I had to change who I am -- which by the way is a casual, sarcastic, non-emotional person.

I guess I could fake tears. Break something. Pretend to be so distraught with this news that I refuse to get out of bed. In some strange way, I think people would better understand that reaction. In their minds, that's the way I SHOULD react. But I'm not a victim. And that's not me. I'm not the kind of person that's going to crawl into bed and let cancer take over my life.

And to be honest, I'd feel guilty doing that. Not to sound completely cliche, but there are starving people in this world! Not only am I not starving, but I have the means to completely change my diet and eat mostly raw and drink disgusting wheat grass shots because it is vital to my health (lucky me).

But in all seriousness, I AM LUCKY. Yeah, having cancer sucks. It really does. But people are literally dying every minute of worse things, including worse cancers. And I'm not actually dying (knock on wood people!). And not only that, but other people are constantly suffering without receiving anywhere near the kind of attention I'm receiving because, yes, I have cancer (See? cancer IS an attention whore!).

And not just "people" but my people. I have friends struggling every day with addiction. I have a friend that is so sick, who constantly suffers, and even the doctors can't figure out why. I have friends that have experienced loss so terrible that I pray I never have to know what that feels like.

I could have it so much worse. And because of this, I don't spend my days crying and feeling sorry for myself. Itt's because of this that I jokingly compare my tumor to that of my pregnant friend's babies, also wondering if "Little Hodgy" has grown any today.

When I found out about the cancer, I wasn't given a death sentence. So please, I beg of you, stop expecting me to act like I was. 

And please, whatever you do, don't confuse this plea with being unappreciative of all the continued love and support I do receive every single day. It is because of that boundless love from friends, family, and people everywhere that I am able to have the strength and courage to tackle Little Hodgy. But when you see me having fun with my friends or joking about cancer, please don't tell me I should be home mourning. Because unlike others less fortunate, I'm not dying.

At least not today.


Saturday, December 24, 2011

Control C

When I first found out I had cancer, I spent a lot of time contemplating the idea of control. My initial feeling was one of helplessness, a loss of control. Naturally, I had a very brief, but very real, and deeply genuine thought: "why me?"

I started thinking about things that have been shown to have a direct correlation to cancer: Abusing alcohol, smoking, drug use, poor diet, lack of physical activity, exposure to chemicals. None of these applied to me. Like most who probably get diagnosed, I always felt like I would never be a part of that statistic. And certainly not at 28.

Then I started taking my diagnosis personally.

I believe in Karma. I treat others as I want to be treated. I put others first. I don't judge. I'm a NICE person.  So, yeah, why me? Why not the bitchy girl we all know. Or the guy that's a jerk to everyone. How is it fair that I am the one that ended up with cancer?

But it turns out, cancer isn't fair. And it doesn't discriminate. It doesn't matter that you're a good person, that you make all the right choices (most of the time). Sometimes you just can't control cancer. 

Or can you?

I've spent the last two weeks endlessly researching an alternative treatment to chemo. I WANT to believe the doctor's when they tell me that “this,” whatever they say “this” path is, is the best option. The only option. I crave staying the rule follower that I've always been. But I know that even the all mighty doctor doesn't have all the answers. They don't know everything. The reality is, chemo is not effective for most cancers. In fact, according to International Cancer for Nutritional Research, “Chemotherapy contributes just over two percent to improved survivial in cancer patients.”  Only benefits TWO PERCENT of cancers? How can that be enough to stake my life on?

Almost always, however, We just don't have a better option. The reality is, more often than not, chemo does more harm than good. But it is human nature to need to do SOMETHING instead of nothing, even if that something involves pumping your body with drugs so toxic, that they themselves cause cancer. But as my doctor said, we deal with the cancer you have now instead of worrying about the potential cancer you'll get down the line. Super reassuring...

I can deal with the hair loss, the nausea, the fatigue. But when I'm told that the treatment -- THE "CURE" to my current cancer -- will significantly increase my chance of eventually getting heart disease, breast cancer, lung cancer, leukeimia, thyroid issues, as well as a host of other life threatening diseases, I can't just blindly accept what the doctor says is right.

I realize this sounds crazy to most people. I repeat, I realize this sounds crazy to most people. I’m not trying to justify the position, but I’m deflecting the other radical position in this debate too, namely that "Doctors are trained professionals." "This is their job." "They treat people like you every day." "Just listen." "Just TRUST them."

Fact check: this is my health. My life. My body. And I've never been very good at immediately trusting people in the past, so why the hell should I start now?

So I researched. I've read countless stories of people with incurable cancers curing their disease with alternative medicine. I've watched documentaries on how changing your lifestyle and diet alone can shrink tumors. (Burzynski: The Movie, Forks Over Knives, The Gerson Miracle).

I've learned that statistics are misleading. That my 85% cure rate means that more than likely I'll survive five years. FIVE years. Great, I'll make it to my 33rd birthday. I won't even be old enough to go through my mid life crisis where I can buy some outrageously flashy convertible to prove how young and cool I am. So what if I make it to 33? And then what? If I die after five years and one day, I'll still go down in the records as being cured. Even if I then die of cancer. Officially, I will have been “cured.”

I've also talked to experts who have told me that the American Cancer Society, the American Medical Association, the Pharmaceutical companies, and the FDA all benefit from cancer patients. How they would lose billions of dollars a year if a cure to cancer was found. And as fucked up as it sounds, that these industries benefit from people having cancer. In fact, we are no closer to curing cancer than we were 50 years ago. Even though the American Cancer Society has an "any day now" message in the media. That message is starting to get old. Decades old.

I've even found out that Oncologists financially benefit for every patient that gets administered chemotherapy. One article in the New York Times said this:

"Unlike other physicians, a cancer doctor can profit from the sale of chemotherapy drugs in a practice known as the chemotherapy concession. These doctors are paid for the cost of the chemotherapy drugs given intravenously in their offices — even though they frequently purchase the drugs at lower prices than the amounts they are paid in insurance reimbursements.

One government study said that cancer doctors, or oncologists, were receiving discounts as high as 86 percent on some chemotherapy drugs. The doctors then pocketed the difference."

I'm not an expert and I am well aware that there is A LOT of false information on the internet. But one thing that has been made clear in my research is that none of the experts are 100% looking out for my best interest. Everything is political. Even the anti-chemo videos have their own set of motives that don't always benefit the patient.

The reality is, I am the only one who is responsible for looking out for myself. For getting all the information. For making the most informed decision possible. I have control over my own treatment plan and it's okay to question the doctors, even if their fragile egos disagree. But again, this is my life and I'm okay pissing off my doctor if it means a better outcome for my own treatment.

I've also learned that all of these "experts" - oncologists, radiologists, nutritionists, Ph.D biochemists, etc. - all think their way is the right way (which I totally get. I'm always right too - just ask my husband). But what I've learned is that when it comes to cancer treatment, there is no "right way." I've learned that what is right for me might not be right for the guy next to me that also has Hodgkins Lymphoma. We're all different, so how do we expect the same set of drugs to treat us equally?

So my dilemma over the last two weeks has been whether or not I go the traditional route and fill my body with toxic drugs that have a host of severe short and long term side effects or take a risk and try an alternative treatment that may not be "officially proven" and may do nothing but waste time and allow my cancer to grow? And with so much information on the internet and so much conflicting information, how do you make that decision?

Recently, it was suggested to me to check out the non profit, People Against Cancer. The woman who recommended them is a friend of the family and who I would consider an expert in the field of cancer, not only professionally but as a cancer survivor herself. So, it was extremely helpful to me that she pointed us towards People Against Cancer.

What the organization does is help with the overwhelming research process and help illuminate the best path of treatment for each specific patient. They don't just look at the cancer, but the whole person. Their job is to ultimately help minimize the risks and maximize the benefits of the chosen treatment plan. And, in all of my research, they seem to be one of the few organizations that is willing to engage multiple treatment options from the different fields of both traditional and alternative treatments, and is willing to let the patient decide for themselves based on the several options presented – what option is best for me?

More than likely my treatment will involve a combination of treatments. It will be integrative too.  But, I’m almost certain (but not yet truly certain), that it will include both chemo (because lymphomas are included in the 2% that do benefit from chemotherapy) and alternative therapies like acupuncture, yoga, massage, and nutrition. And, as my husband promised, RETAIL THEREAPY. (Good things can come from cancer!)

It's unfortunate that these alternative treatments aren't first brought up by my oncologist - that its the responsibility of the patient to raise the concern about nutrition during chemotherapy. That they don't tell you about what would be helpful to avoid as a person living with cancer. For example, cancer feeds on sugar- the PET Scan that measures cancer is radioactive glucose. Glucose. Aka Radioactive Sugar. And yet, when you’re doing chemotherapy, the doctors offer you cookies and fucking lollipops. Hello? Here you go cancer, get nice and strong on these sugar cookies.

But to an oncologist, getting rid of the current problem, the cancer, is considered a success. And it doesn't matter how much it destroys the body in the process or if you’re literally feeding the cancer with sugar as you're essentially destroying my body’s natural defenses. Talk about feeding the beast.  Literally. Again, fact check. This is my body. My health. My treatment plan.

According to the oncologist, if you're alive at the end, it's a win. But me? I plan on taking more control. I plan on not just being alive, but being a healthier, more informed version of myself. I don't want to ever again wonder "why me?". Life isn’t fair, so fuck it -- I’m going to make sure I've controlled every piece of this process to ensure the only "C" I celebrate next year (and way more than 5 years after that) is Christmas.

Merry C everyone!

Tuesday, December 20, 2011

Stage Fright

Since finding out I have Cancer, I've been much more aware of my body.

I question every little ache and pain, wondering is it normal or is it the cancer? The period of waiting for the cancer to be staged was the worst. Knowing it was possible that the cancer was in my other organs or in my bones made me hyper aware of my body. I'd get a cramp and be convinced the cancer had spread to my stomach. My leg would ache and I was sure it was in my blood.

I felt like that WebMD researcher who has a cold and concludes "I HAVE CANCER!" The difference was, of course, I actually do have cancer.

I had a solid week of this type of behavior between the tests themselves and actually finding out the results. It was a long week. I knew my best case scenario was stage II. Worst case was stage IV.

As it turns out, I'm Stage II (SCORE!). Stage IIBX, to be exact. It's funny how that title becomes a little bit defining. On every support site and information forum, your byline is your type of cancer and it's stage. "Hello my name is Dana and I have Hodgkins Lymphoma, Stage IIbx." Hi, Dana.

So what does that mean?

Stage II means I have a perfectly good excuse to hibernate through the rough Detroit winter. It means I will be done with my treatment before the springtime flowers start to bloom. It means, like the flowers, my hair will start to bud and grow back in time for summer. It means I get to spend my weekends on the river instead of in the hospital. It means I turn into my mother and think of my hair as rosebuds and write cheesy lines to validate staying inside when it's fucking freezing outside. Hey what ever helps you sleep at night, right? Stage II means five months of hell, but then it will be over (knock on wood). And as Winston Churchill says, "If you're going through hell, keep going."

The "B" part of the staging means the tumor is "unfavorable." LIke anyone feels that a tumor in their body is favorable. But according to the doctors, favorable tumors exist, and unfortunately I don't have one. The B means I have certain side effects associated with the cancer: fever, night sweats, weight loss, etc. I'm still not convinced I'm actually a B patient. You could say it's denial, but I'm just looking at the facts. Yes, I did have fever and night sweats for a week several months ago, but never before and never since. And as for weight loss, I don't think 2 lbs counts as "significant weight loss." I think the stress of finding out there's a cancer in your body will scare 2 lbs off of anyone.

The X means my tumor is bulky. Anyone that knows me, knows that no part of me is considered "bulky." But lately I'm finding out that I have very bulky insides. Not only is my tumor large, but apparently I have both an enlarged heart and a "bulky pancreas." On my original CT Scan, there was a mark on my pancreas that they believed to be cancerous. This is why they believed me to be at least stage III (cancer is in areas above and below the diaphram). Turns out, I just have a bulky pancreas.

Some people are blessed with big butts or big boobs, but not me. I was blessed with a big pancreas. Eat your heart out Sir Mix A Lot.

Thursday, December 15, 2011

Saturday, December 10, 2011

Making the Cut

When I was 13 I decided to walk a mile up the road and get my hair cut at the Hair Cuttery. I don't remember why I felt the need to walk a mile by myself to cut my hair - maybe I was being rebellious or trying to express my independence. Or maybe I just really wanted a hair cut. But for whatever reason, at that time I felt a strong urge to make that solo trek. I didn't intend on doing anything drastic. Just a trim. But somehow my "just a trim" got lost in translation and resulted in an above the chin bob. I was devastated. Traumatized. I ran home, crying the entire way.

It's been 15 years and I've never gone back to a Hair Cuttery and I've never had short hair again.

Until today.

Today I cut off 10 inches of my hair and donated it to Wigs for Kids. Originally, I was donating to Locks of Love but I found out that they end up selling most of the donated hair for a profit. And the wigs they do end up making, they usually sell to the the kid's family. Wigs are expensive. Human hair wigs are outrageously expensive. The last thing a parent should have to worry about is how to come up with $2000 so their kid can have some sense of normalcy. So Wigs for Kids it is.

When I told people I was going to cut off all my hair, a lot of people asked me "why?" Why go through something so traumatizing right now? But I have good hair. Really good hair. Long and unprocessed. I could probably make a small fortune selling it on the black market. But there is no way I'm going to let cancer let my good hair go to waste. Cutting it before chemo takes it from me gives me some kind of control of the situation. Besides, when you're told you're going to spend the next year of your life rocking a bald head, short hair no longer seems so scary. Plus, a little girl with cancer now gets to rock my awesome hair. Eventually, I'll get it back anyway.

Here's a preview of my new 'do:

Testing, Testing...

Turns out denial and I are not as close as I thought. And cancer, as it turns out, is very good at being the third wheel. Cancer interrupted not just my thoughts, but my conversations as well. And when my adventurous spirit wanted to walk all over the city, cancer made sure to remind my body that it was still there. Nevertheless, I had an amazing time, even though cancer did everything in its power to control my fun.

Reality hit full force when I got back in town. Wednesday I had a Pet Scan to show more clearly where the cancer is in my body. This is a relatively easy test that involved me first becoming radioactive (seriously.) and then lying perfectly still for 45 minutes. The whole process was time consuming, but easy. Although afterwards I wasn't allowed to hang out with babies because of my radioactivity. I felt a little badass and kind of like a super hero.

The other procedure I had on Wednesday was a Bone Marrow Biopsy. And yes, it's as bad as it sounds. This test indicates whether the cancer has spread to my bones, which also helps with the staging. Basically a hollowed needle is inserted into the hip bone and then a smaller needle is inserted inside the first to remove both bone marrow fluid as well as a sample of the bone itself. Apparently my bones are made of steel. The process reminded me of this scene from Armageddon:

And just like Bruce Willis eventually succeeded in drilling through the asteroid and saving the world, my doctor eventually succeeded in getting that needle into my bone. But it was not without pain and suffering. And two days later, I still feel like I hit with an asteroid.

Today, I had an "easy day" with an Echocardiogram and Pulmonary Function Test. Both are noninvasive tests that test out my heart and lungs to make sure I don't have any preexisting conditions before I start chemo. As someone who prides myself on being able to swim an entire length of an olympic size pool without coming up for air, it does hurt my ego a bit when I don't succeed in the 100th percentile for lung capacity. Damn tumor ruining my skills.

Tomorrow I test my ability to let go of my security blanket. My hair.

Stay tuned.