Choices

Last night, I had a bout of complain-itis.

I whined to Jeff that I am officially sick and tired of being sick and tired. I’m tired of having excessively dry skin. I’m tired of my digestive tract being in a constant state of turmoil. I’m tired of being so physically exhausted that it takes me two hours to run to the post office and back. I had to shave my head again because the hair that remained is growing in as some sort of fuzzy down feather concoction while the hair that fell out isn’t coming back in yet. I decided to buzz it down to avoid looking like a fuzzy bowling ball with bald spots.

Plus, my next chemo treatment is coming up in about ten days, and I’m really dreading it. I should be looking forward to it, because it’s the last scheduled treatment. I’m dreading the nausea and vomiting and generally horrible feeling that comes for a week after treatment. My body hates these treatments so much now that I actually get anticipation sickness – feelings of nausea and the metallic taste in my mouth – days beforehand. This is common among chemo patients as, apparently, the memory center of brain triggers these symptoms in reaction to the anticipation you have about an upcoming treatment. Joy of joys! Not only do I have to deal with the nausea and metallic taste due to the actual treatment, I also get to feel sick a few days ahead of time, too.

Jeff’s response when I complain about chemo? “Go for the treatment and get better or don’t go for treatment and don’t get better, so really there’s no choice.”

This response makes me think about the choices you have as a cancer patient. When I talk to people about my cancer diagnosis and treatment, it is not uncommon that they respond with, “You’re so brave to go through that” or “I don’t think I could handle chemotherapy” or something along those lines. A lot of people think they couldn’t deal with the treatment and wouldn’t be able to go through with it.

The truth is, they would be able to do it and are braver than they think. In fact, I honestly cannot think of anyone in my life who wouldn’t immediately choose to start chemotherapy as soon as possible if they were in my position a few months ago. Not one. There really isn’t a choice to make in that situation at all.

That said, there is some latitude as far as the type of treatment that you decide to pursue. If you’re like me and completely trust your oncologist, you will go through with whatever combination of chemotherapy and radiation that they think is appropriate. Time was really not on my side – my tumor was growing so quickly that I really didn’t have the option of getting a second opinion, not that I wanted to. Other people opt to seek out second opinions and perhaps land on a different type of chemo that they feel will be better for them and their lifestyle. Some seek out a combination of chemotherapy/radiation and holistic treatments, like meditation, massage therapy, acupuncture, and herbal supplements. Others still believe that chemotherapy and radiation are poisons that shouldn’t be used to treat cancer and instead decide to only pursue holistic/naturopathic treatments. (By the way, before my own cancer diagnosis, the biologist in me used to think these people were just plain nutty. Now, I think every patient needs to do what’s right for them and will get them through each day. To each their own. How very zen master!)

Outside of how you decide to pursue your treatment, the only real choice you have as a cancer patient is about the attitude you have towards your treatment and the disease. I chose to be proactive and positive about 10 minutes after learning I had a tumor in my chest. In my mind, there wasn’t really any other option. What good was it going to do me to wallow in self pity and to pull the “woe is me” routine? Absolutely none. I have nothing to gain by being a sad sack and everything to gain by being my own best advocate in my treatment and being confident from the start that I am going to beat cancer.

Along with that positive attitude comes using comedy as a coping mechanism. Jeff and I do this to deal with pretty much every situation in our lives, good and bad, and my cancer diagnosis is no different. I know this doesn’t work for everyone, and in fact, there has been more than one occasion in which our cancer jokes have been a little off-putting for those around us. Oddly, some people don’t think it’s funny when I say something like, “What? It’s not like I have cancer or anything….oh wait” or Jeff says, “You know what I just realized? Pitbull looks like a 30 year old woman with cancer”. (Actually, I didn’t think that one was particularly funny. I also didn’t like, at first, that he called me Little Stevie when I wore a head scarf for the first time. I think I’m too sensitive about my bald head.) It’s an acquired taste, and I know that. But, that doesn’t stop us from making jokes because it makes us feel better and I honestly think that, ultimately, it does make most people comfortable around me.

When I was diagnosed, I was so set on positivity in my life that I instituted a no crying and negativity rule for those around me. I told my parents and Jeff that anyone could visit or call me, but they couldn’t cry and they couldn’t be negative about my diagnosis and treatment. I didn’t want to hear it – period. I know what all the possibilities are surrounding cancer – bad side effects from chemo/radiation, time away from work and doing things I enjoy, the possibility that my treatments wouldn’t work, and ultimately, I could die from this. I didn’t need to be reminded of any of those things. That said, I also can’t tell people how to feel about my diagnosis and what I’m going through. If they want to be sad about the fact that I was diagnosed with cancer, that’s fine. They just don’t need to bring that attitude in my house. For all intents and purposes, I am the Dikembe Motumbo of cancer.

All of that said, there are times, like last night, when I am frustrated or negative thoughts begin to creep in. This often happens when I’m reading other patients’ blogs or I hear stories about cancer patients that don’t have the best ending. I would be lying if I said I never once wondered, “What if I am in the 10-15% of diffuse large B cell patients of my age group that isn’t cured?” or “What if I’m one of the 10% who has a recurrence?” Fortunately, I’m able to just mentally acknowledge those thoughts and then focus on the positive. A few deep breaths usually help, too.

As I’ve said before, it’s easier for me to feel this way because my prognosis is very good and this is the first time (and hopefully last) I’ve been diagnosed with cancer. It is obviously not nearly as easy when you’ve had a recurrence or a diagnosis of a completely different type of cancer after being in remission for several years. Last night, in the middle of my complain-itis, I watched the season premiere of World of Jenks on MTV. This season includes the story of Kaylin, a woman in her 20’s who was originally diagnosed with Ewing’s sarcoma, went into remission, and then was diagnosed with thyroid cancer, for which she underwent an intense surgery. Unfortunately, she was recently diagnosed with a recurrence of Ewing’s sarcoma. She writes a really great blog called Cancer is Hilarious that chronicles all of this. It is interesting to read about how another patient who is close to my age is going through her treatment for the third time, but mostly, her story reminds me that I’m lucky in that my prognosis is very good and my treatment has been relatively complication free so far. This certainly put things into perspective.

Is that the good Hodgkin’s or the bad Hodgkin’s?

First, I just wanted to thank everyone for their support through comments on the blog and Facebook and messages/emails. I was hesitant to actually post it anywhere, so I’m excited to have such great feedback.

A lot of you expressed concern for how I’m actually feeling. I plan to write about side effects (including hair loss – the biggie!) in the near future, but I can assure everyone that I’m feeling relatively good. In fact, other than being bald, you probably wouldn’t know I was sick if you saw me in person. Except for the few days after a treatment, I don’t feel nauseous and I have a lot of great meds to help keep that all in check.

I thought it might be helpful if I shared some information about non-Hodgkin’s lymphoma and the sub-type that I have, diffuse large B cell lymphoma, before I go into too many details about my treatments and side effects. In my mind, the disease becomes less scary if you know more about it. This also gives me the opportunity to share information about my prognosis, which is quite good as far as cancer is concerned.

As an aside, this is the first time since I’ve been diagnosed that I’ve looked up specific prognosis/cure rate information for myself. Up until now, I’ve completely believed what my doctors have told me without fact checking them too much, which might be surprising to my biologist friends. While I know many of you would run to the scholarly journals, I have steered far clear of them and just placed my faith in my doctors telling me the truth as they know it to be. My rationalization for this is that it really does me no good to dig deep into the literature. I have cancer – reading tons of papers and about abnormal cases wasn’t going to cure me, but I believe being positive and putting trust in my doctors would. I did do some reading on basic websites to make sure I understood everything and I was also given tons of literature in the hospital, so that sufficed for me. To each their own, I suppose.

Warning – I’m about to go all science geeky on you. I’ve tried my best to avoid too many technical terms. Most of this info was summarized from the Leukemia and Lymphoma Society webpage, which is a great resource on blood cancers, and the Cancer Research Center of the UK, which states their information quite clearly and in an organized fashion (typical of Brits).

Cancer is basically a situation where the cells in a specific area of your body go rogue and begin to divide at an uncontrollable rate with damaged DNA. Not to scare you, but these rogue cells exist in everyone’s body all of the time. Fortunately, the human body has mechanisms to identify rogue cells and kill them but the mechanisms of identification and/or killing in specific areas can be damaged. If that system fails, your immune system should take over as a backup to isolate and kill rogue cells, but as you’ll see below, non-Hodgkin’s lymphoma is a cancer that attacks your immune system, so that was a non-starter in my case. The abnormal cells will continue to divide at an alarming rate, eventually forming a tumor and will spread to other areas of the body if not treated.

Lymphoma is a blood cancer, specifically originating in the lymphatic system, whose role is to protect against disease and infection. The lymphatic system includes lymph nodes and vessels, the spleen, bone marrow, and blood plasma among other things. The lymph nodes contain white blood cells called lymphocytes that kill diseases and infections that might enter the body. The nodes are connected to one another by lymph vessels and those lymph vessels also connect to your blood vessels. This is how lymphocytes enter the blood. There are three different kinds of lymphocytes, including B cells that produce antibodies to fight infection.

There are two main types of lymphoma – Hodgkin’s and non-Hodgkin’s (NHL). NHL is the 7th most common cancer in the USA, with aggressive (fast growing) sub-types making up 60% of all NHL cases. Diffuse large B cell, the most common form of aggressive NHL, is diagnosed in half of the NHL cases in the country, so I have a lot of company.

For those of you who are Curb Your Enthusiasm fans, you will know Hodgkin’s lymphoma as the “good Hodgkin’s” (http://youtu.be/Zd-AEkvmg54), because of its higher cure rate than non-Hodgkin’s. As you may have already sensed, Jeff and I cope with pretty much everything in our lives, especially my cancer diagnosis, using (often irreverent) humor, so when I told him the definitive diagnosis of non-Hodgkin’s lymphoma, we were both quiet for a moment and then I asked, “Is that the good Hodgkin’s or the bad Hodgkin’s?” This was one of my many times throughout this process that we both knew I was going to be just fine.

After my oncologist spoke with me about my specific diagnosis, the first question out of my mouth was, “What is the prognosis?” The prognosis for most cancers depends on a number of factors, including your age, health prior to the diagnosis, whether the tumor is localized to one area or has spread, and your stage. The diagnosis rates of NHL increase with age generally, with most patients being 55-60 or older, but my doctor informed me that diffuse large B cell lymphoma of the mediastinum (chest cavity) is one of the most common cancer diagnoses in young women between the ages of 20-40.

Fortunately, he said that diffuse large B cell lymphoma is highly curable in people of my age group and health profile when diagnosed in the early stages. I am relatively young, was in good health prior to the diagnosis, the tumor is localized to the chest cavity, and since my blood work wasn’t showing much other than usual tumor markers, he knew I was in an early stage. I had no idea that oncologists even used the word curable. I had always heard of cancer going into remission but never thought about being cured. I suppose I just thought cancer survivors lived in a permanent state of remission. (Perhaps this is because most of my family members who have had cancer either passed away from it or are living with it as a chronic condition.) “Curable” seemed like a forbidden word when talking about cancer. When my doctor said “curable”, I thought it was like the secret word in Pee Wee’s Playhouse and everyone in the oncology ward would scream if they heard someone say it.

To clarify, when you are declared cancer free after your last treatment, you are in remission. In the US, you are considered to be “cured” if you are cancer free for more than five years. I’ve read in several European studies that they measure cure rates after 3 years cancer free. Whether you’re European or American, cure rates for young women with diffuse large B cell lymphoma are 85-90%, perhaps even slightly higher depending on what studies you read, so the odds are definitely in my favor.

When I was in the ER and the resident told me that I had a 12-13cm mass in my chest, my first thought was lung cancer. Looking back on it now as a biologist, I know that was a really unlikely diagnosis since primary organ cancers are typically slow growing, while diffuse large B cell is described as fast growing and aggressive, and primary organ cancers are often detected on the millimeter (not centimeter) scale. I had an X-ray 15 months prior that showed no sign of anything, so it was unlikely that lung cancer appeared as a large tumor in less than a year. However, when you first find out you have a giant mass in your chest, logical thought flies out the window. I did know, however, that the prognosis for lung cancer is not good as in most cases when lung cancer is diagnosed, it has spread there from somewhere else. At that point, survival rates are quite low (less than 10%), and even if it was localized, survival rates are still pretty low (25% or so).

Most of the doctors told me from the start of my stay in the hospital, well before even my biopsy, that if I had a lymphoma as they strongly suspected, most are highly curable in people of my age. The news that this was likely a lymphoma of some kind, as opposed to lung cancer, was then a huge relief. It’s funny how your perspective changes quickly in situations like this.

I would like to think that my positive attitude would be the same if I had some type of primary organ cancer with a different prognosis, but I’m not going to lie – knowing that the cure rates for the type of cancer I was diagnosed with is so high makes it easier for me to be positive and full of jokes. I also refuse to believe I’m in the 10-15% of people who aren’t cured – it really hasn’t even entered my thoughts as a possibility.

And (spoiler alert!!), this whole situation has gotten a lot easier since my mid-treatment CT scan revealed that my once 12-13cm mass is now down to about 5cm. It hasn’t been easy getting there, but it could be a whole lot worse.