How my life has changed…

Well, it looks like almost a year has gone by since I last posted. So much for not letting the blog fall by the wayside as I continue the march through remission.

Frankly and fortunately, there’s not a whole lot to report about my health in tangible terms. I am fortunate to still be in remission from primary mediastinal diffuse large B cell NHL. I’ve had a few CT scans during the past year (two scheduled and one due to psychosomatic scanxiety symptoms and a heavy dose of caution on the part of my oncologist), and all have come back clean. I recently had an appointment with my oncologist that was almost two years to the day from my last chemo treatment, and happily my blood counts looked great. My next appointment will fall right around the two year anniversary of completing radiation, and if I’m still in remission at that point, the likelihood of recurrence drops again to less than 5% or so. I will only have two check ups and one CT scan per year for the next three years, and then I will be considered “cured”. It’s all really kind of amazing.

Although I haven’t been as active on here as I would like, I am staying in touch with the cancer community and current events, especially issues surrounding blood cancers. As a patient in remission for almost two years, most of what I deal with now are the emotional and psychological effects so blog posts and articles related to this are of particular interest to me.

A month or two ago, a really great article was posted in the NY Times blog by Suleika Jaodad, a young leukemia patient who recently went into remission. It is an insightful and honest look at what life can be like after cancer. While our paths and outlook are not entirely the same, like Suleika, I’ve struggled with the emotional and psychological side effects of cancer and treatment. Reflecting on this article, and listening (for probably the 10th time) to a wonderful talk given by a hilariously funny, honest, and gifted co-worker of mine, Ann Velenchik, entitled, “How Cancer Changed My Life…and Didn’t”, made me think a lot about how my own life has changed in the past two years, both practically/logistically and emotionally/psychologically, and how it hasn’t changed.

(Let me preface all of this by saying that one constant in my life as a cancer survivor in remission is that I preface almost every comment, or even thought, about my own cancer experience with, “I know I’m very lucky to be in remission, but…”. I’m not going to do that in this post but please know that the underlying genuine sentiment is there. It is exhausting to feel like you have to validate/qualify every thought, feeling, or statement you have about your own cancer experience by announcing that you know you’re lucky you didn’t die.)

My friend Ann asserted in her talk that while some things have changed in her post-cancer life, many things have not. In my experience, this is true to some degree. I am back at work full time. I have bills to pay and mouths to feed (they’re the mouths of our two cats, but still). Most day to day interactions are similar to those of my pre-cancer life in that they don’t revolve around, or involve, cancer. I have to clean the apartment, I have to do laundry, I have to grade papers, and I have students who I love but who can simultaneously drive me batty. Basically, the day to day is normal and generally ho-hum.

Very little has changed about me physically besides the fact that I discovered I REALLY like keeping my short hair, and chemotherapy and radiation have apparently killed my metabolism. I lost 40 lbs. in a few months about a year before I was diagnosed after transitioning to a low-carb diet. I gained all of that back and then some during treatment. Emotional eating and not being able to move will do that to a person. The trouble is, I’m now back on the same low-carb diet and added in walking on an almost daily basis, and the scale still isn’t budging an ounce. I feel good internally, but it’s not showing up in terms of weight loss, which is SO frustrating. I know I’m not alone in this among cancer survivors either. Cancer can really make you feel ugly, if you let it.

On the other hand, I feel like a lot of things have changed in my post-cancer life. I’ve felt a remarkable shift in my outlook and what I want from the rest of my life. This sounds cliched, I know, and oddly beautiful in an Eat, Pray, Love sort of way, but it’s not always ideal. While I have this renewed sense of wanting to get out and “Do, Do, Do!”, this doesn’t necessarily jive with how Jeff and I approached life pre-cancer. That can be really hard to rectify, especially because I would like to “Do, Do, Do!” with other people, whether it’s Jeff or other friends but I don’t really know how to initiate that very well. I wouldn’t say that I have a bucket list per se. In fact, like my friend Ann, I don’t really like the idea of having a bucket list. This makes it sound like I have this static check list of things that I must do, and if I don’t, my life will be unfulfilled. I’m always adding to my list of things I’d like to do or places I’d like to go. I just struggle with making it happen.

Unfortunately, I’ve also found new and exciting ways for my anxiety to manifest itself (not surprising). Scanxiety sets in the week or two leading up to a scan and the days between a scan and my check up with my oncologist. I’m obsessed with my overall well-being and constantly monitor every pain, bump, rash, and sleepy day occurrence. However, I’ve now asked my primary or oncologist for a referral to specialists for a couple of things that are bothering me that likely have nothing to do with cancer, like a constant ringing in my ears, but when I get the call to schedule an appointment, I end up deciding not to go after all. I just don’t have it in me to visit yet another doctor and have yet more follow ups and tests. The thought is exhausting, and I’m sure this is a subconscious (or maybe not so sub-) avoidance tactic, because I’m afraid that a seemingly benign symptom could be due to something more serious.

As I’ve mentioned before, I struggled with anxiety/OCD prior to my cancer diagnosis. Yet, I had a remarkable sense of clarity and calmness during my diagnosis, treatment and recovery. I’m sure there’s some clinical psychologist who would love to get their hands on my brain, because I think having OCD allowed me to so singularly focus on doing what I needed to do to get well that there wasn’t the room in my brain to obsess over anything else. I wouldn’t say that I obsessed over getting well, but I think I was so tired and had such an immense sense of resolution regarding my position in life during that time that I couldn’t focus on much else and didn’t care to. It was as if my life had been categorized with a big, old CANCER stamp and nothing else could shoehorn its way into my mind.

Quite frankly, I yearn for that sense of clarity and calm now. I hoped it would stay with me, but it is long gone. I would just love to feel that sense of calm again and I don’t really know how to get there without a catastrophic life event. Consider me unadventurous, but that’s one thing I don’t want to “Do, do do!” again.

My sense of self has changed. That cancer stamp branded me, and I’m definitely a different person coming out of the experience than I was going in, probably in ways that I still don’t understand. What I want from life has changed, I think. I want to have more fun, I want to be more passionate about everything important in life, I want to be the best possible version of me that I can be. I also, probably unfairly, want more from the people in my life. I knew how to be a cancer patient – and quite honestly, I was a really good cancer patient. I think I’m having trouble figuring out how to be me after cancer, and what to expect from the people in my life.

There isn’t a day that goes by when I don’t think about the fact that I had cancer. Sometimes, my thinking about it revolves around the fact that it feels like it didn’t happen to me at all. Did I really have cancer? How could that have possibly happened to me? How is it possible that life could return to normal in some way? On the other hand, some days, having cancer is all I can think about, especially when I’m coming up on an appointment or I have a scan or I’m just generally not feeling well. Why did that happen to me? Why did I survive and so many other people are not as lucky? Why is cancer so seemingly random? A random whiff of windshield wiper fluid reminds me of the burn I would get in my nose from the “red devil” IV push during chemo. I get a look at my scars or radiation tattoos in the mirror. Even the short hair that I love reminds me that I only discovered I like having short hair because cancer didn’t give me another choice.

Yikes, this all sounds like a lot of griping from someone who should be really grateful. Here’s the bottom line, I guess – I am grateful. I’m happy to be cancer free. My life is different in a lot of ways now, for better and worse. I suppose I’m now just lucky to have the time now to figure it all out.

 

My Truth About Cancer

When I started this blog, I swore I wouldn’t stop updating on a regular basis once I was remission and feeling like myself again, because being a cancer patient/survivor doesn’t end with remission. One of the many truths that I’ll share in this post, though, is that you have to carry on with your “normal”/pre-cancer life once you go into remission. You have to go back (hopefully) to work, you can go outside and be around people again, and you are expected in some way to pick up where things left off. Believe me, I’m grateful to be able to do those things – it just means I haven’t had a lot of time to update the blog lately.

Since my last post, I had standard blood work and a check up with my hematology oncologist, and all is well. My counts were good – I’m still NED (no evidence of disease). For the first time since November of 2012 when I was diagnosed, I feel like myself. My energy level is good and the side effects are relatively minimal. My oncologist predicted it would take between 6-12 months after completing radiation before I felt relatively normal, and once again, he was right on the money – it was about 9 months that I noticeably felt better day to day. This is all great news, indeed. I’ll have another CT scan in July, and hopefully, I’ll get the news that I’m in remission for a year!

Even though I’m in remission, I am still involved in the young adult cancer community and raising awareness when/where I can. I’m particularly sensitive when I see stories on social media platforms that stretch the truth or flat out lie about cancer, as if scientific research isn’t heavily based in years and years of work and data collected, or as if everyone’s experience with cancer is uniform.

That’s why I was especially enraged when I saw a post going around Facebook and Twitter claiming that “John Hopkins” had released a “cancer update” last week. In the mid-2000s, this same update was circulated via email to the point where Johns Hopkins’ Kimmel Center, one of the most prestigious cancer centers in the world, had to release a statement explaining that this email was a hoax. Their release does an amazing job, not surprisingly, of dis-spelling the assertions made in this email point by point. I would encourage anyone who is interested in the details to follow the link provided by the Kimmel Center and read about the science behind cancer. In short, the main point of the hoax email was that traditional therapies (surgery, chemo and radiation) do not cure cancer, and cancer patients should try to manage the disease by altering their diet, among other truth stretching tidbits.

This thing has reared it’s ugly head yet again, and it’s driving me insane. Why give such a thing any credence by addressing it at all? I’ll tell you why – because when I was diagnosed and went “public” with my diagnosis, I received more than one email/Facebook message sharing information pulled from this stupid thing. Because of this hoax email, people I know suggested that I should explore other more natural/holistic options before “poisoning my body”. In fact, people I know told me stories about their friend’s husband’s co-worker’s son who had a completely different form of cancer from me. He was going to die(!), but he drank this herbal tea, extracted from the stem of an exotic melon or some such thing, and now he’s cancer free. I should totally drink the same thing and my cancer will go away!

Well, golly gee, problem solved!

I also got some variation on the “Don’t feed the beast by eating sugar!” warning – the thought behind that being that cancer cells “eat” sugar. If you eliminate the sugar in your diet, then you will starve the cancer cells and voila! Cancer free! The truth is that all cells metabolize sugars for energy, and it’s not really straight up sugar. It’s complex or simple carbohydrates, among other things, in anything that you eat that cells will metabolize. There’s no possible way to cut this out of your diet, unless you didn’t eat anything. At all.

By the way, guess what I ate first after my diagnosis? A big, delicious, chocolatey brownie. Because I was just diagnosed with cancer, that’s why.

Here’s the thing – spreading these kinds of anecdotes may feel like you’re doing the right thing. At it’s core, this email is just preaching the benefits of living a healthy lifestyle, right? The problem is, messages like this make cancer patients, or at least this one, feel like they neglected to do one or more of these things, which is why they got cancer in the first place. Plus, when you’re literally staring death in the face, the last thing you need is someone telling you about some cockamamie home remedy or that the entire cancer treatment system (so-called traditional treatments) is not going to work for you, or worse, is going to hurt more than help.

I should also say here that all of this, obviously, is my opinion/view point. I don’t hold any hostility towards patients who choose to go with these alternative routes. In fact, I know of a number of patients who chose them after traditional therapies didn’t work. I also know of patients who completely chose the holistic route based on their previously held beliefs, regardless of an email going around. Often times, these patients chose to see a naturopathic doctor, but at least they were under the care of a physician with training and education. I say that each patient has to make their own decisions on what is best for them and I don’t want to chastise patients who choose to go with the alternative routes. I do get frustrated when people who aren’t in any kind of position to be giving medical advice tell someone who is very sick to consider something that flies in the face of what their doctor tells them – just to avoid “poison” – when there is no medical basis in the advice. That is a scary thing.

So, keeping in mind that no one patient’s experience is like anyone else’s, here are MY truths about cancer:

1. There is NOTHING that I did or ate or drank that solely caused cancer (short of being a Caucasian woman in between the ages of 20-40 – the most likely group outside of the elderly to be diagnosed with DLBC NHL with a primary site in the mediastinum). I was 30 when I was diagnosed. There is almost nothing that I could have done in that relatively short period of time that caused my cancer occurrence. Believe me, I have asked my oncologist about this on multiple occasions, even though I know what the answer will be every time. Not a thing that I did – not standing in front of the microwave while it was on, not drinking from a plastic bottle, not eating a boatload of sugar every day (or even now and then), not using a cell phone, not drinking red wine or coffee, not NOT drinking red wine or coffee, not eating red meat, white meat, or any other kind of meat, not eating dairy (the horror!), or eating said dairy from a plastic utensil – has been directly shown to give someone my age a form of cancer. It’s just flat out not enough time to do that kind of harm. My case of cancer, and likely those of a lot of young adult patients (of which there are  about 70,000 diagnosed every year), was likely due to a combination of factors. I will readily admit that I don’t live the healthiest lifestyle. Was this a factor? Sure, possibly. But it definitely wasn’t the sole cause. I am sure that a good deal of it was just random genetic mutation and a whole lot of bad luck.

2. Traditional treatment did some horrible things to my body. The physical side effects of receiving traditional treatments – in my case, chemotherapy and radiation – were difficult and very real. Hair falling out was the least of my concerns, quite frankly. That was relatively painless. My scalp was sore for a few days prior and then my hair started falling out in clumps when I showered or brushed my hair. Sure, it’s superficially embarrassing to be a bald woman and it’s a daily reminder that you have cancer, but it’s easily covered up.

There were far worse things to tackle – biopsies, minor surgeries, horrible tastes in your mouth, fatigue from both chemo and radiation that was damn near overwhelming, random joint and bone pain, short term memory loss, and difficulty breathing/swallowing during radiation.

For me, though, the GI tract issues were by far the worst issue, at least physically. Nausea, vomiting, acid reflux, diarrhea, and constipation – it was different every day and there was no way to predict what would come next. Although I haven’t written about it, I will just say that having to give myself an enema was quite possibly the lowest point throughout the whole process. There is nothing like that experience to make you feel like a child again, and I wouldn’t wish it upon anyone. As if having the conversation with my oncologist (who I knew for about a month) wasn’t bad enough – “Gee, doctor, I haven’t pooped in about a week and things are getting mighty uncomfortable”. He prescribed me medications – none of them worked so there was only one option left. The only reason I could muster up the strength to do it myself was because I knew that I would end up in the hospital having someone else do it for me if I couldn’t pull the proverbial trigger. Absolutely horrifying and embarrassing. I even hate to write about it, but the truth of the matter is that this kind of stuff happens when you have cancer.

3. The emotional toll cancer, and treatment of it, takes on your life and relationships is just as bad as the physical toll, if not worse. Nothing shakes you to the core like hearing you have cancer. Or learning that the life saving treatment could prevent you from being able to have biological children of your own (although this is unlikely in my case) and that you might not have the six weeks to wait (or the exorbitant money) to go through the embryo preservation process. You are forced to face the possibility that you might not live long enough to share another holiday with your family. That’s certainly not a thought that you expect to have running through your head at 30 and it changes how you perceive the rest of your life.

3. There are long term physical and emotional issues on the horizon. I’m not entirely sure what the long term emotional issues will be, although I know for sure that I’m still sorting through everything and probably will be doing so for a long time to come. I constantly think about things like: who was there for me when I needed help? Who wasn’t? Why? Will my entire life always be lived in fear of a recurrence or secondary cancer? Will I ever be able to talk to someone who had or has cancer without feeling an immense amount of anxiety? I don’t know, but I do know that as a young adult patient, these thoughts could be something I have to deal with for a long time.

Because I was diagnosed at a young age, the possibility of a secondary diagnosis – lung or breast cancer – is a real possibility. However, chemo, and especially, radiation are much more advanced in their targeting capabilities now than they were years ago, contrary to what this hoax email would have you believe, so it’s tough to know what the likelihood is of that happening. More uncertainties, for sure.

4. I have some positive personal truths about cancer, too. Going through the diagnosis and treatment caused me to slow down, both physically and mentally. This period of my life was the first time in a very long time when I couldn’t do anything but relax and rest and I was remarkably calm. I had to relinquish control very quickly to my oncologists and there was some sense of relief in that. In a twisted way, I enjoyed having an excuse to just sleep, move slowly, and only do what absolutely had to be done. There were no feelings of guilt if I didn’t attend an event or do this, that or the other thing. That was so wonderfully freeing. No one had any expectations of me other than to focus singularly on my treatments and taking care of myself. I could read or watch TV without feeling an ounce of concern about what wasn’t getting done because I was doing that instead. I was also so exhausted that my mind just couldn’t go a mile a minute, which was pure bliss for someone with OCD on top of cancer.

5. It sounds cliche but having cancer and going into remission has quite truthfully encouraged me to be thankful for all the good things in my life, to focus on what is important and not take a thing for granted. I know now how quickly life can change, so I’m grateful for every good experience, opportunity, and relationship in my life. I’ve also tried to maintain some sense of calm, although the farther out I am, the harder it is to keep it up.

6. But my most important and “truthiest” truth about cancer? Traditional therapies, no matter how grueling in every possible way, saved my life. Six rounds of RCHOP and 22 radiation treatments to my chest took a lot out of, and from, me, but they gave me my life back. If I had to go back and do it again, I wouldn’t change a thing.

And that is my truth.

 

Great News with Oddly Mixed Emotions

I will start this post off with great news – put that right up front. I had a “re-staging” CT scan with contrast on Tuesday and my hematology oncologist informed me today that everything looks great. There’s still no evidence of disease (NED), and the scar tissue left after I finished treatment is decreasing in size. There was some question as to whether this scar tissue still contained cancerous cells as it was still somewhat “hot” on my last PET scan, but since it’s smaller than when last measured in July, we can assume that it’s all clear.

This is great news, it really is. I’m logically ecstatic about it – no cancer is a very cool thing. I keep thinking back to this time last year when I was in the middle of chemo treatments, bald, exhausted and just barely plodding along. Fast forward a year and I’ve been back to work for a few months, I just celebrated the holidays and another birthday with family and friends (including a trip to Nashville) and I’m going back to work again for the spring semester next week. It’s pretty much a complete 180 from where I was a year ago.

I am going to take an aside here to say that I don’t intend to offend anyone with what I’m about to say. When I started this blog, the main purpose was to write truthfully and from the heart about my experiences with cancer. As time has gone on, it’s become a way for me to communicate with friends, family and other patients and it’s also become a way for me to process my emotions and thoughts via writing. I’m certainly using the blog for this purpose today.

I feel kind of emotionally off kilter about this news about still having no evidence of disease. I should be dancing a jig, beaming from ear to ear. The relief in my mom’s voice when I told her about the CT results made me really happy, but I’m just in a weird place emotionally at the moment.

I think there are a few things going on. Cancer messes with you psychologically for a good, long time after you finish up your treatments and get word of your NED status. This is compounded for folks, like myself, who have pre-existing anxiety disorders. In fact, I was diagnosed with obsessive compulsive disorder (OCD) about a year and a half prior to my cancer diagnosis – something I haven’t told most people in my life until now. I’m not a stereotypically obsessive compulsive germophobe – thank God, because having cancer as a germophobe would be the worst form of hell. I’m also not a “counter”, as in someone who needs to turn the light switch on and off a certain number of times before they leave the house. I am a checker. I’m that lunatic who checks to make sure the oven is off at least a half dozen times and may even be halfway through my commute to work when I turn around to check that oven one last time, just to be sure.

I was in fairly intense cognitive behavioral therapy for about 8 months to treat OCD, and I tried to avoid medication, but I finally acknowledged that I couldn’t lick it without the help of some sweet, sweet drugs and I was prescribed Paxil about six months before I was diagnosed with cancer. For me, Paxil has really been an amazing sanity saving medication. While on it, I’m clear headed, and I’m able to go on with a fairly normal life without checking much. If I do fall back into that pattern, it is relatively minimal and I can use coping mechanisms that I learned in therapy to manage it.

Throughout most of my cancer treatment, my anxiety levels were surprisingly low. I was level headed, practical and calm for the most part. I rarely checked anything, health related or otherwise, and I just surrendered to the fact that I had cancer and had to deal with treatment. This is surprising to a lot of people who haven’t had cancer, but about 15 minutes after the ER doctor informed me that I had a 13 cm mass in my chest, I went into complete and total survivor mode. This is not unique to patients with anxiety and is apparently somewhat common. I am fairly sure that I blocked out any extreme emotions that would prevent me from focusing on what I needed to do to get well. I instinctually knew that being anxious would breed inattention to detail and would prevent me from tuning into what was going on in my own body. That would do me absolutely no good. I think most people in a stressful situation like that tend to shut down emotionally and/or put up their emotional guard to protect themselves from any more pain and suffering than is absolutely necessary or tolerable.

Since I went into remission, my anxiety levels and OCD tendencies have definitely up-ticked. This is surely because I’m now able to mentally and emotionally relax a little bit, and there is room for non-cancer related thoughts to invade my brain. There’s also an emotional release from the routine of being in active treatment. When you’re in treatment, you’re handled with kid gloves and you are the center of the universe for your family, friends and your medical team. With just one appointment, that all changes. Suddenly, you’re in remission – you’re “cured”, you’re free of the shackles of treatment and constant care. This should be a good thing, but if anything, it can make you feel even more anxious because you only need to check in with your doctors once every few months. The scans are less frequent and the blood work isn’t done quite so often. Everyone around you generally seems to think that cancer is done and over with for you. Very few people seem to realize that you will have to live with cancer in some form or another for the rest of your life.

Being out of active treatment makes me much more anxious because it’s now on me to figure out if I’m feeling well day to day and over the long term between appointments. Because diffuse large B cell is an aggressive form of NHL, most recurrences are not caught by scans or blood work, according to recent studies, but instead are caught by patients reporting symptoms to their medical team. Basically, this means that it’s mostly up to me – the OCD riddled cancer survivor- to determine whether I’m feeling symptoms that might indicate that cancer has returned.

I generally do pretty well with this, but this week has been really tough. I got my CT scan on Tuesday morning and between that point and my appointment with my hem/onc this afternoon (Thursday), I’ve jumping every time my phone rings thinking it was my doctor calling to tell me that they found something on the scan. I almost had a heart attack when the scheduling service called on Tuesday night to remind me about my hem/onc appointment day and time. By the morning of my appointment, I hadn’t heard from my hem/onc, which is a good thing as I know he would call me if something was wrong, but that still didn’t mean good news to my anxiety prone brain. I have been feeling exhausted lately and have developed a bit of a cough this week. Never mind that we’ve had a horribly busy holiday season between visiting Jeff’s family for Christmas, hosting his dad at our place a couple days and then spending a week in Nashville visiting friends. Never mind that Jeff has a cold, and our friends were just getting over terrible flu like symptoms when we got there. To someone with anxiety, especially OCD, all logic goes out the window and the fatigue and slight cough couldn’t possible be due to the common sense sources. I was positive by the morning of my follow up appointment that lymphoma had returned.

What does this irrational and obsessive line of thinking and anxiety lead to before I got the good news that I was, in fact, just fine? I started taking deep breaths every 5 minutes to see if I felt congestion like pressure in my chest or pain in my chest or back. I started coughing to see if any phlegm was produced – phlegm is good, no phlegm is bad. I took mental notes on how much I was sweating and whether my legs were itchy, extreme levels of both are lymphoma symptoms. I spent the last couple of days obsessively checking the internet for recurrence symptoms (stupid, stupid, stupid – never check the internet for any symptoms of anything ever. You will ultimately be told that you have cancer – oh wait…) and that led to reading up on what the likely next step would be for me in terms of treatment (from what I could tell, there is a higher dose chemo option called R-ICE that seemed likely and possibly an autologous stem cell transplant) because at this point I was convinced that cancer had recurred. It didn’t take long before I ended up going into mental and emotional defense mode.

I started thinking about what it would be like to tell Jeff that I had cancer again. I was playing out the phone call to my parents in my head and praying that my hem/onc would offer to call them for me because I don’t think I could bare that conversation again. I mentally prepared myself for treatment – nausea/vomiting, crippling fatigue, hair falling out, constipation/diarrhea, dry mouth, the whole nine. I thought a lot about whether I could work through treatment this time around – I am close to the start of the semester and it would really mess up my department’s schedule if I couldn’t work. I already placed such a burden on my co-workers last spring, I couldn’t ask them to do that again. Would I lose my job? My insurance? How would Jeff and I manage?

Most of all, I was mentally preparing to hear and react to my hem/onc saying, “I’m sorry, Jocelyne, but there are some troubling spots on your CT scan and I think we need to schedule a biopsy. This is most likely a recurrence.” I went into survivor mode so I didn’t have a breakdown when I heard that news. Over the past few days, I haven’t been able to convince myself that I’m just tired, not flat out exhausted like I was when I was diagnosed. I have a cough but it’s mild and productive, not the dry, seal lion barking cough that I had last November. I have not been sweating buckets like a menopausal 60 year old woman. Still, I convinced myself via OCD that I had cancer again and my life was about to be turned upside down.

I was a wreck during the drive to the hospital this afternoon, but by the time I was taken into the exam room, I was calm with acceptance of what I was sure was the inevitable. So, when my hem/onc came in the room today and said, “I have great news! Your CT scan came back clear. You still have NED and in fact, it looks like the scar tissue is shrinking”, I was floored. I didn’t even have the rush of euphoria that many with OCD get when their checking confirms that whatever it is that they’re concerned about isn’t true at all. I just said, “Oh, that is great news! But, I’ve been feeling more tired than usual and I have a cough…”. I just couldn’t let it go. I couldn’t emotionally accept that I might have a cold, but I don’t have cancer.

It is sinking in that I’m healthy. I am happy that my CT was all clear. It’s just confusing. I was beyond mentally prepared to go to battle again, and just like that, I found out that it wouldn’t be necessary. I had psyched myself up for no real reason. In some sick and twisted way, I guess it’s kind of a let down. I was ready to take it on and then I found out that I don’t need to fight.

And because I have anxiety issues and things are really twisted in the brain of someone with OCD, I can’t help but feel like I’m just waiting for the other shoe to drop, that my bout with cancer isn’t done yet. I’d rather it just rear its ugly head now so I can face it and be done with it, rather than let it hang over me for who knows how long. I hope I’m able to let go of that thought eventually.

I think I’m also dealing with some survivor’s guilt or the issues that veterans deal with after returning home from war – the feeling that others are fighting while you’re home enjoying your life and that isn’t how it should be. (By the way, I really don’t like the cancer “war” analogy – battling cancer, winning the fight, losing the war with the disease. If you have it and you deal with it in whatever way you know how, you can’t lose in my mind. In this case though, I can’t think of another way to describe it.)

The other issue, I think, is that it has become very easy to connect with other young adult patients in the internet age. I’ve mentioned StupidCancer.org here before. I’ve met some great people through that site. Since my last post, I’ve also become a “mentor angel” through Immerman’s Angels and have developed a relationship via email with my mentee who also has NHL. I’ve made a few blog friends via email, and of course, everyone knows someone who has or had cancer and they feel the need to tell you all about them. Plus, every cancer story that you hear on the radio, TV, etc. touches you in a whole new way once you’re a patient or survivor. All of these resources have allowed me to feel connected to the young adult cancer community and have people in my life who can identify with my situation.

The downside to all of this support via other patients and survivors is that, unfortunately, some of them will inevitably have recurrences or worse. It’s just the nature of things, I suppose. While this sort of news wouldn’t have affected me quite so badly before I was diagnosed, it hits me hard now. In the past few weeks, I’ve learned of several people who have had recurrences that I’ve either developed relationships with, who I know through friends or who I just have heard about through different media sources. Some are undergoing more chemotherapy, some are getting stem cell transplants and some are undergoing surgery.

I wonder why they’re dealing with the horror of going through everything all over again and I’m not. Why am I that lucky? The ridiculousness of considering yourself lucky that you haven’t had a recurrence is not lost on me, by the way. I could just as easily be in their shoes, and for whatever reason, I’m not. I’m thankful, but I often think about how indeterminate, indiscriminate and unforgiving this disease is. Some patients are hit only once in a lifetime, some are hit over and over and over again. No one really knows why.

As I’m writing this, I do feel better. I just need to live my life and surround myself with friends and family and happy moments. I need to recognize that I’m lucky given the new framework that my life exists in. I’ll sort through my emotions in the meantime and try to be unquestioningly grateful.

Giving Thanks for an Anniversary

I’ve never been a big fan of Thanksgiving for some reason. I mean, I enjoy gorging myself on turkey, stuffing, mashed potatoes, pies and the like – who doesn’t, let’s be honest? I also have great memories as a kid/teenager of going to the Thanksgiving HS football game and playing in the marching band or seeing old friends who returned to our small hometown from wherever they are in their lives. Given that I grew up about a half hour south of NYC, it wasn’t uncommon for my family to go into the city the night before and see the giant balloons being inflated for the Macy’s Thanksgiving Day parade and then watching the parade on TV or even in person the next day.

Those traditions are nice, and I love those memories, but for whatever reason, Thanksgiving has never been a holiday that I’ve particularly looked forward to. For better or worse, it wasn’t a day when I reflected on all that I was thankful for and certainly wasn’t something I led up to for the entire month of November by posting what I’m thankful for on Facebook. I could kind of take it or leave it.

Last year, my perspective on the holiday changed forever. One year ago on this day in 2012, about one week before Thanksgiving, I went to my primary care doctor’s office to take care of a cough that just wouldn’t go away. I walked in the door thinking I would be on my way home maybe an hour or two later with a prescription for some cough medicine and an antibiotic with plans to head to my in-laws for Thanksgiving two days later. As it turned out, I ended up in the radiologist’s office that afternoon and the ER by that night, and after a contrast CT scan, I was I was told that I had a 13 cm mass in my chest cavity that was most likely a cancer of some type. I was wheeled out of the hospital nine days later after a stay that included being diagnosed with non-Hodgkin’s lymphoma and my first chemotherapy treatment.

One year later, I’m ecstatic to say that I’m in remission and finally starting to feel like my life is getting back to normal. I hate to be hack-y and hokey, but my cancer diagnosis and treatment forced me to take stock of all the things that I’m thankful for…an amazingly supportive husband who has made me laugh everyday of our 14 years together, a family who has stood behind me every step of the way with brave smiles on their faces while trying to hide their fears (and tears), and wonderful friends, some of which drove from many miles away to just say hello and sit by my side when I was diagnosed and who continue to be a great source of support. I’m grateful for working at a top notch institution with familial-like co-workers, for having excellent health insurance and a stable job waiting for me once I finished treatment. I also thank my lucky stars everyday for my exceptional oncologists who have gotten me to this point, a primary care physician who cares about her patients as if they were family, oncology nurses who are tough as nails, and hospital support staff who truly give everything they have to their jobs to help heal others.

What I’m most thankful for now, on my one year diagnosis anniversary, is the perspective cancer has given me and the wake up call I received to make me realize that, among other things, I should be grateful for everything I have every day, not just for one day, or even one month, out of the year. It is important to take the time to thank those around you for everything they’ve done, and continue to do, for you. A simple expression of gratitude takes next to no time out of your day but can mean so much to those around you.

As I sat in a hospital bed last Thanksgiving and watched the Macy’s Day parade while eating a Thanksgiving “dinner” for lunch, I wondered if I would ever see another Thanksgiving or holiday season. Would I get to go to another Thanksgiving Day HS football game in my hometown? Would I ever get another chance to go into NYC for the Thanksgiving Day parade? Would I see my family home so beautifully decorated at the holidays? Would I live to see Jeff’s and my kids running down the stairs to open their Christmas gifts?

One year later, I can say that I have every intention of seeing all of those things and more and for all of that, I’m thankful.

So as not to end things on too serious of a note…I wish you a Happy Thanksgiving!

http://youtu.be/baHYCpXKP0s

Being a Young Adult (YA) with Cancer

In the cancer world, I am considered a young adult patient (YA; someone diagnosed with cancer between the ages of 18-39).  In contrast, pediatric patients are those under 18 and patients who are 40+, I suppose, are just ‘cancer patients’ – no special labels for them. Over the past few months, I’ve experienced many things that YAs with cancer have to deal with that might not be so common among pediatric and/or older patients and since I’m writing on this blog about what it’s like to be a 30 year old with cancer, I should probably touch on some of these issues. I’ve been able to reflect on them a lot more now that I’m done with active treatment, so here we go.

A jumping off point…recently, a column was posted in the Huffington Post.com’s Healthy Living section by a 20 year old woman named Elise Frame who was diagnosed with leukemia, and she equates being a YA with cancer as being in a sort of medical no-man’s land. We are treated in the adult center because of our age, although we face many of the same issues as pediatric patients (concerns about living a healthy life after cancer/avoiding recurrence) and older patients alike (job security, health insurance coverage, maintaining relationships).

I must admit that it sounds like I’ve had a much better experience in the adult cancer center at my hospital than Ms. Frame had at hers. We have psychologists and nutritionists who specialize in working with cancer patients that are available to us at any time. I’ve partaken in art and pet therapy while getting treatments (Coloring with crayons and petting furry dogs really does make you feel better when you’re getting chemo, by the way. You basically revert to a child-like state.). There are numerous social workers and patient advocates available to help you navigate the insurance maze, handle medical leaves, and applying for state aid. Most importantly, my doctors, nurses and therapists are amazingly caring and compassionate people. They seem to love their jobs and have gone out of their way to make me feel as comfortable as possible.

That said, being a YA with cancer has presented its own share of issues that may not be encountered by younger or older patients.

First of all, there’s the simple fact that as a YA with cancer, you don’t often see other patients in your age group at the adult cancer center. I was in active treatment for seven months, and over that time, I saw patients in the center who were relatively close to my age less than 5 times. Otherwise, I was typically surrounded by middle aged or, mostly, elderly patients. Not seeing anyone else “like you” can make you feel really isolated and circus side show-y as you walk around the clinic.

The one thing I craved during treatment more than anything else (other than sleep and to be cured) was to connect with people my age who were going through the same thing. The easiest place for a patient to connect to other patients is in their cancer center while they’re getting treatment. Even a brief conversation with a fellow patient to commiserate can be a huge pick me up in your day. While I didn’t mind chatting with Ethel about how horrible she feels and how her grandchildren are coming by to visit her in the clinic later on, it wasn’t the same as talking with someone my own age who was also getting treatment. When chatting with the elderly patients, I felt like I needed to put on a sweet smile and be overly polite when I really just wanted to talk to someone like I would one of my friends about how horribly sick I felt. As much as talking to my own friends and family helped in some ways, no one really knows what you’re going through as a cancer patient unless they’ve been through it themselves, making connecting with other YA cancer patients all the more important.

My cancer center has support groups that meet once a week or every other week, but it would be really nice if they had a YA specific group. I know of several centers that do this, but if this isn’t available to you, you have to seek out other avenues of support. Fortunately, a non-profit for YAs called Stupid Cancer (www.stupidcancer.org) was formed by a YA patient in 2007. Their website has forums where you can connect with other patients on a variety of topics. They also have a Facebook page and a podcast so you can connect that way as well. StupidCancer also holds a yearly summit to allow patients/survivors to meet and interact and the regional divisions hold smaller meet ups across the country. They also advertise seminars and conferences specifically for YAs with cancer, so it’s a great resource.

Many non-profits/societies for specific types of cancer have support groups and fortunately for me, the Leukemia and Lymphoma Society holds an online chat each week specifically for YAs who currently are undergoing treatment for blood cancers and survivors. I’ve been joining in on that group for a few weeks now, and it’s been helpful to discuss side effects, how everyone deals with different obstacles, and just to feel connected to other patients. This blog has helped me to connect to other patients, too, both through comment sections on other blogs or via email. It certainly helps to connect to other patients in any way that you can.

Medically speaking, there are a number of issues YAs face that might be shared with pediatric patients but not older adult patients in adult clinics. Because the majority of patients in adult clinics are not YAs, the oncologists in those clinics may not be as comfortable with discussing some of these issues as they’re often focused on the effects of cancer and treatments on older patients. This is ultimately why Ms. Frame chose to switch to a pediatric clinic as YAs and pediatric patients alike deal with the reality that having cancer and being blasted with chemo and radiation at a young age can have significant side effects on your health for the rest of your, hopefully, lengthy life. Older patients may have secondary illnesses further down the line, but the fact remains that they likely don’t have to live a majority of their lives with the issues I’ll mention below.

When my oncology team got to the point where they were discussing the side effects of chemotherapy with me in the hospital, my thoughts quickly went to what effects chemotherapy would have on my fertility. As a married woman in my early 30s with no children (although Jeff and I do want to have them), you can’t help but immediately worry that chemotherapy could prevent you from having biological children of your own. (Chemo wreaks havoc on the female reproductive system – it can cause temporary or permanent infertility and early menopause, and radiation can permanently damage the ovaries and/or eggs, if you are radiated in the abdominal region.) In a matter of just a few days, I went from leading a normal life and planning on having kids down the line to being suddenly faced with the prospect that I might not ever be able to have children of my own with Jeff.

A quick, but important, side note here. I really like my hematology oncologist for a variety of reasons – most importantly that he is an excellent physician – but I think one of the reasons I feel so comfortable with him is that he is in his late 30s, only a few years older than me. I have been able to talk with him about all of the potential issues I’m facing specifically as a YA cancer patient, because I know they’re issues he can identify with, even if most of his other patients are much older than me. This is a large part of the reason why I feel so well cared for in the adult clinic.

When I brought up my concerns regarding fertility, my hematology oncologist immediately validated my feelings and concerns. He informed me that about 90% of women my age who undergo R-CHOP keep their fertility and have children after treatment. It might be harder than it would have been, but it is possible. He did say though that there was a possibility that I could lose my fertility due to treatment, so he brought in a reproductive endocrinologist for me to speak with about our options in terms of preserving my fertility and I met with her before I began my treatments. The urgency with which he handled this and the validation he gave my concerns was really important to me. I’ve heard many stories from other YAs who say that their oncologists didn’t feel that the preservation of fertility was as important as starting treatment right away, and I’ve heard of patients who really had to lobby to get more detailed information about their options before beginning treatment. My oncologist recognized that I have a life outside of cancer that could be changed dramatically and permanently if he didn’t do what he could to help me make the best decision, and I am so grateful for that.

(Just for those who are curious…the repro. endocrinologist informed me that our best option for preserving fertility was to freeze our embryos as if we were undergoing the in vitro fertilization process. Apparently, storing embryos, as opposed to solely eggs, is more effective in the long term. There are some downsides to this process, though. The most important of which at that point was that I would have to hold off on starting chemo treatments for about three weeks and would have to inject myself with hormones everyday to stimulate egg production. I would feel even worse than I already did and I would risk the mass spreading or growing in the meantime. Although I’m insured through an employer in Massachusetts where infertility treatments are completely covered by insurance, I was a patient in Rhode Island where it is not covered. Thus, the process would cost a minimum of $7,000. But, I was informed that “storage” of the embryos was “fairly cheap” at $300/year. They would have been stored at a facility in Manhattan. It’s an odd thought – I would be carrying out my life in Rhode Island and our embryos would just be chillin’ (literally) at a facility in NYC. Ultimately, Jeff and I felt strongly that our chance to have children on our own was still good and I really didn’t want to have to wait to begin treatment so we decided against this whole process. Plus, we didn’t want to go into debt on top of everything else that was going on to save some embryos that we might not need.)

I’m hoping to get at least another 50 years out of this body, so I have to think about other effects that chemotherapy and radiation may have on me years down the line. For one thing, I will have to live a good portion of my life getting lab work and scans and checking in with both of my oncologists. That doesn’t sound taxing but the wait in between, constantly worrying if something new will show up or if your old cancer will come back, can be excruciating. Because I will have a longer period of time ahead of me than most other adult patients, I have a greater (although still relatively low) likelihood of developing a secondary cancer from radiation, like breast or lung cancer. I will also have a greater likelihood of developing heart disease earlier in life and may need to have arteries or valves replaced in my heart due to the side effects of R-CHOP. Many of these issues are those that are known to develop 20-30 years down the line, well after many older cancer patients would expect to live. Again, it helps in my case that I have an oncologist who talked through these possibilities with me before I began both my chemo and radiation treatments. Not every YA patient has this opportunity to know what they’re getting into.

While I’m sure that the cosmetic issues faced by cancer patients is tough regardless of age, I think they are tougher on pediatric and, particularly, YA patients. Imagine being a 21 year old young woman without hair, eyebrows, eyelashes, or nails. Imagine that your skin is yellowed and dry and you’ve either lost or gained a tremendous amount of weight from your treatments. It can be demoralizing and debilitating. It’s a time in your life where you try to look your best to attract a significant other and you feel as if you’re supposed to be in your physical prime and yet, you don’t even recognize yourself in the mirror anymore. Having an oncologist who sympathizes with this and can help you plan for hair loss or answer your seemingly superficial questions (like, “When can I dye my hair again?”) is a very good thing, but I fear that not all oncologists in adult clinics are receptive to these types of conversations as they view treatment as the only thing that is important.

There are effects on YAs beyond the medical issues that may not be as prominent for cancer patients of other age groups. As we’ve learned through all of the discussions about “Obamacare”, YAs are more likely not to have adequate insurance as this is a time in life when you may think you don’t need to worry about having a job with good benefits or that it’s more important to get a job/internship doing something you love, even if it doesn’t offer health insurance. On top of that, YAs tend to think that nothing “bad” will happen to them in terms of their health so purchasing private insurance isn’t a perceived necessary expense. Let me tell you, my cancer care, which isn’t all that complex compared to what other patients go through, has been billed to my insurance to tune of easily $500,000 and climbing every day. A colleague of mine had a complex case of leukemia and her care cost over $2 million. Imagine having to cover this out of pocket as a 22 year old intern at a magazine. The fact is, you couldn’t cover. Cancer can financially ruin YA patients if they aren’t prepared with good insurance coverage. Even if they have insurance, it might not cover everything and the co-pays and deductibles alone can be overwhelming. While pediatric patients are often covered by their parent’s insurance or can be covered by state/federal aid programs and older adults are likely to be more established in their careers and have benefits coverage or may be eligible for Medicaid/Medicare, many YAs may not be prepared for this type of disease to hit them and are caught financially off guard.

Further, YAs may be in college or working their first full time job when they’re diagnosed. Managing college classes and living amongst several thousand other people in a dorm aren’t exactly the best conditions for a cancer patient so many YAs are forced to take a leave of absence from school for an undetermined amount of time. They’re then disconnected from their social networks and can feel even more isolated. YAs who are lucky enough to have a full time job are usually at the start of the careers and their position at a particular company might be more tenuous than that of an older adult patient. Job security is a clear issue for YAs with cancer and it can be difficult to find your way back into the workforce again after you go into remission.

Finally, there are many social issues that YAs with cancer must deal with. As I’ve mentioned before, telling my parents and my husband that I had cancer was the hardest thing that I’ve had to do. No adult child should have to have that conversation with their parents – it’s absolutely gut wrenching. I am lucky in that my husband and I have been together for 14 years or so, so bumps in the road like this are manageable for us. However, I could imagine where a YA with cancer who has a “younger” relationship might struggle and it would be even more difficult to find a significant other during or after treatment as your self esteem can really bottom out between the hair loss, surgery scars, and weight gain/loss that can come with treatment.

This isn’t to say that pediatric or older adult patients don’t go through some or all of these issues, but I think the YA population is really dealt a tough and complex hand when they receive a cancer diagnosis. I have been SO lucky to keep a constant salary and benefits, to know that my job will be there for me when I’m ready to come back, to keep steady relationships with family and friends, and to have medical teams that understand what I’m going through. Unfortunately, not every YA is so lucky. In the future, I’d love to see more support for this group and I’ll continue to do what I can to get the word out!

Marathons, Walks and Bike Rides – Oh my!!

I have been so fortunate to have the support of family, friends and co-workers throughout my diagnosis and treatment, and I plan to write more about that in the coming weeks as it’s been a huge part of my success in beating cancer so far.

I’m sure we all receive requests occasionally from folks we know who are participating in a walk, run or bike ride to raise money for charity. I’ll be honest and say that I used to get overwhelmed by these requests to the point where I would just overlook them. Now these requests have taken on a whole new meaning for me, especially when the charities involved relate to cancer research. I’m so appreciative of these events now, especially those that are in someway involved with raising awareness and funds for blood cancer research.

In the past few months, I’ve had a few friends and family who have let me know about walks, runs, or bike rides that they are participating in and I’d like to share their donation links with everyone who reads my blog in the hopes that some of you might consider donating to their causes. I have a connection in some way or another with all of these rides/walks/runs as you’ll see below. Right now, considering a donation to one of these causes is probably the best way you can help me out, because my biggest hope for the future is that researchers/doctors can find, at least, better treatments for blood cancers, if not a cure.

First, many of you know that I have been volunteering at the Seal Rescue Clinic at Mystic Aquarium for a little under a year. Unfortunately, I’ve had to hold off on volunteering this winter as I am immuno-compromised and diseases between seals and humans (believe it or not) are communicable. Although we wear protective gear in the clinic, my oncologist didn’t like the idea of me coming into contact with wild animals that can carry things like seal pox (kind of like small pox) and I didn’t want to risk transferring anything I might be carrying to the seals. Nevermind the fact that I don’t think I could endure the physical part of the job right now.

The director of stranding and rehabilitation at the aquarium, Janelle Schuh, is participating in Team in Training for the Leukemia and Lymphoma Society. She is training now for the America’s Most Beautiful Bike Ride in Lake Tahoe, CA, a 100 mile bike ride, for her Uncle Dan. She’s kept me in the loop about her training and I’ve been sending her updates about my treatments, etc. Here’s the link to her donation page: http://pages.teamintraining.org/ct/ambbr13/jschuh1.

Shortly after starting the blog, a friend of mine from high school, Kelly Rieder, commented on this blog several times. She reached out to me through Facebook and explained that she is also participating in Team in Training to raise money for the Leukemia and Lymphoma Society by running in the Nike 1/2 marathon. She asked if she could run in my honor, and flattered, I said of course!! She is a rockstar fundraiser and has already exceeded her goal, but please consider contributing to her fund at: http://pages.teamintraining.org/nj/nikewhlf13/krieder.

Finally, shortly after I was diagnosed, a friend of mine, Katelyn Germano, posted on Facebook that her 12 year old niece, Alexah, was diagnosed with non-Hodgkin’s lymphoma as well. This disease is tough enough for me – no child should have to endure it, but Alexah is putting up an awesome fight. Katelyn is walking in the 2013 Relay for Life of Bridgewater State University for the American Cancer Society on April 5th and she’s walking for Alexah and me. Here’s the link to her donation page: http://main.acsevents.org/site/TR?fr_id=48640&pg=personal&px=31208136.

I don’t usually like soliciting people for funds, but these are all great charities that support cancer research and are associated with people from all different parts of my life. I hope you consider donating to one of these events or perhaps either the Leukemia and Lymphoma Society or the American Cancer Society in the future. A day when blood cancers are preventable or are all curable for people of all ages will be a great day and both of these organizations support research efforts that I believe will make that a reality.

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.