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.

Wednesday, November 30, 2011

Denial's a Bitch...Or a Vacation...

Aaaaand I’m skipping town...

I’m on the next plane out of here and heading South – South America to be exact.

I’m not ignoring my problems, but I had a life before lymphoma and I’ll continue to have a life during and after. And there’s no way I’m letting cancer ruin my plans. Is it wise to head off to a foreign country when you have a tumor displacing your trachea making it difficult to breath? Maybe not. Is it wise to run off with your husband on a relaxing vacation before chemo tries to control the next 6-9 months of our lives? Absolutely. (Although my mom may disagree).

Am I running away from Cancer? No. In fact, it’s coming with me! Grab a beach towel, Cancer, we’re going on vacation!

Now, am I avoiding Cancer? Absolutely. At least for the next week.

On Monday I met with the oncologist at the Karmanos Cancer Institute where I’ll receive my treatment. If this didn’t feel real before, it definitely feels real now. I’ve been telling everyone that I don’t feel like a cancer patient. Well, after that visit, I feel like a cancer patient.

I’d imagine that cancer patients go through similar stages of grief as anyone who’s experienced the loss of a loved one. In a way, we’ve experienced loss too: loss of control over our bodies, loss of freedom, loss of time. Stage one in dealing – Denial.

It’s easy to experience denial when cancer has to compete with the holidays, your job, family visits, supportive friends, etc. There’s not a lot of time to think about cancer when the Thanksgiving parade is marching down your street. Because who wants to think about cancer when you can think about the holidays? Not this girl.

But denial can’t last forever. Eventually the parade ends; your family goes home and your friends go back to their lives. Eventually the distractions stop long enough for the revelation to sink back in: I have cancer.

And even if you’re great at living in denial and pushing those thoughts out of your head, a meeting with the oncologist will rip those thoughts from that dark forgotten place in your mind and throw reality back in your face.

The reality is, the stage of my cancer is still unknown. Next week, I go in for a battery of tests including a bone marrow biopsyto see if the cancer has spread from my lymph nodes to my blood. Right now, I know I have at least stage 2 lymphoma since the cancer is in my neck and chest. The reality is, further tests could determine if the cancer is below my chest, raising my stage to 3 and/or in my blood, bringing it to the highest stage, stage 4. Hello Reality, Goodbye Denial.

You know what else you can’t deny? Losing your fucking hair. Because then not only will I feel like a cancer patient, but look like one too. And there’s a chance I may become infertile. Talk about reality. If I haven’t thought about having kids in the future, I better start thinking about it now. Actually, I should have started thinking about it yesterday. Because once chemo starts, it’s too late to start thinking about freezing your eggs. Not to mention the nausea, vomiting, and fatigue that inevitably comes from chemotherapy.

The reality is, you can’t deny the risks that cancer brings with it.

Denial, my friend, where did you go?

But I have one week before these tests. I have one week before this cancer is officially diagnosed and staged. I have one week to jet off to Cartagena, Colombia to watch two friends get married. One week to celebrate love and warmth. To enjoy the sand, sun, and rum. I have one week to spend with my husband pretending I don’t have cancer.

In one week, I’ll come back to reality. Until then, Hello Denial.

Cancer, I hope you enjoy your vacation. I know I will.

Tuesday, November 29, 2011

Just the Facts

By now most people in my network know I have cancer. But I'm a private person, so most people don't know the facts. And most people are gracious enough to not only respect my privacy, but understand I don't want to retell this tale every time I run into someone new. So for all of you curious creatures out there, here they are: the facts.

About a year ago a found a small lump above my collar bone. I didn't think anything of it and didn't get it checked out. The reason? A mixture between avoiding the issue and not wanting to pay for a visit to the doctor's office that wouldn't be covered by my insurance. To be completely honest, I'm sure it was more of the former. I hate the doctor's office. All of them. The dentists, the gyno, general care physicians. If it involves a waiting room and some type of exam, I don't want to do it. Which is ironic since never in my life have I had more than a cavity filled. No broken bones, no surgery, I didn't even wear braces. But somewhere along the way, I developed a phobia of the doctor's office. Now that I have the big C, of course I realize that insurance and a fear of the doctor are both terrible reasons not to get a lump checked out. But as they say, hindsight is 20/20.

Eventually I either stopped noticing that lump or it disappeared completely. The details are a little blurry since I was living it up in Boston enjoying my cancer free existence. But this past fall, I noticed something else in my neck. It was no longer a small lump, but a mass. Now back home in Detroit with a much better health insurance plan, I made an appointment with my Primary Care Doctor. She told me it was probably an infection - that maybe I needed my tonsils removed. To me, that was scary enough.

I'm a researcher by nature. I crave information. I'm the type of person that researches my symptoms to try and self diagnose my problems. Again, this probably goes back to my fear of the doctor's. Did the possibility of Cancer come up in my research? Of course. But as anyone that has ever used WebMD to diagnose your ailments knows, Cancer is always the outcome. Have the sniffles? Upset stomach? Headaches? According to WebMD, YOU MAY HAVE CANCER! So did I actually think I had Cancer? No.

It was at the ENT's office that cancer was first mentioned. After having a tube stuck through my nose to see down my throat, everything looked clear, but I was told I would need a cat scan to learn more. "To rule out Lymphoma." But even then, it was a nonchalant, "we need to rule out Lymphoma." I was never told it was a real or likely possibility. Maybe I should have known when they also scheduled a biopsy, where they'd have to knock me out, slit open my neck, and remove a lymph node. But as much as WebMD says you have cancer, you never actually think YOU have cancer.

When the results of the cat scan came back, the ENT told me in a 30 second phone call that the mass in my neck expanded down into my chest as well. There was no sense of urgency. He said it was fine to wait for my biopsy that was scheduled almost a month later. It was my mom, a retired nurse, that read the scan, sent it to experts in the field and realized this was not something we wanted to wait on. My mom was on the next flight to Detroit.

I found out, not by my Doctor, but by my mother, that the cat scan showed that the tumor was surrounding my heart, lungs and trachea, causing my heart to enlarge and pushing my trachea to the side. Not a reassuring diagnosis. But at this point we still didn't know if it was cancer. At this point, cancer was the last thing on my mind. All I could think about was this tumor strangling my heart and causing it to explode. But this cancer didn't just show up over night. This cancer is slow and takes its time in it's destruction of my body. But with a cat scan like that, recommendations from top doctors in DC, and a mother's instinct, waiting was no longer an option.

I spent two days at the University of Michigan Hospital receiving a variety of lab work, blood tests, and a needle biopsy of the lymph node. Before any of these tests, I was told by the nurse, within the first 10 minutes of being in a room, that there was a 90% chance it was Lymphoma. NINETY PERCENT. After spending 10 years in Hemotology, he was able to tell this based on the placement of the mass alone. Yet, in all the research I had done, I never came across any article, webpage, anything that said, "If you have a mass in your neck and above your collar bone, it's probably cancer. GET IT CHECKED OUT." Why isn't THAT on WebMD?

Sure enough, that nurse was right. 48 sleepless hours later, I was diagnosed with Hodgkins Lymphoma.

So here I am, an official member of the club no one wants to be in.

Friday, November 25, 2011

Black Friday

To all my friends who are recently engaged or expecting: I'm sorry. Just celebrated your wedding anniversary? Landed a new job? I'm sorry to you too.  It's not like I planned to steal your thunder. I don't even want your thunder. But that's what happens. Inconvenient, inconsiderate Cancer comes in and steals the spotlight.

Being told I have Cancer is the scariest news I've ever received. But if you're going to get Cancer, I've been told that Lymphoma is the Cancer to get. Like it's the new "it" bag or something. Like I got the trendy version of Cancer. "It's good!" I've been told repeatedly. But even with this "good" news, Cancer is Cancer. It's still fucking scary. It's still fucking Cancer.

But as my grandmother told me, I'm just like her: stubborn and persistent. Cancer doesn't stand a chance against women like us. In fact, I feel sorry for Cancer having to go up against me because it will lose. So this blog is the journey of me kicking Cancer's ass. Cancer, I'm stealing the spotlight back.

*Please excuse any grammatical errors throughout this blog. When you have Cancer, there's just no time to be grammatically correct.