Things no one tells you about being a survivor…

So…it’s been awhile. Things are going well in terms of my cancer status. I’ve had several checkups since my last post, and my tumor markers and blood cell counts continue to be well within the “normal” range.

Much of what I’m dealing with now are the emotional and psychological effects of being a long term cancer survivor.I have a much harder time verbalizing and writing about them than the physical issues, which explains the long time between posts, I suppose. Now that I’m 2+ years in remission, though, I can breathe a little bit and not feel so focused on the possibility of recurrence. This leaves room for a lot of thinking and emotional processing.

All of this thinking got me to wonder: What would I tell the version of me who walked into the hospital on Nov. 20th, 2012 expecting to be diagnosed with pneumonia, at worst, about being a cancer survivor? Beyond sharing that I survive the treatment and go into remission, here’s what I would tell myself:

  • You will have long term physical side effects that are enough to be mildly annoying relative to, say cancer, but are fairly difficult to negotiate nonetheless. Peripheral neuropathy in my hands, greater susceptibility to colds, and chemo brain are all issues you will have to deal with for months or years after going into remission.  Are these issues life altering? Not really, I guess. Annoying? Absolutely.
  • Complaining about numb hands and forgetting things now and then leads to the fact that you will feel serious survivor’s guilt, and not just guilt that you survived treatment and went into long term remission. That’s pretty run of the mill, quite frankly. No…you will feel survivor’s guilt that you didn’t even think was possible. You will feel guilty that your treatment wasn’t more physically taxing when others have it so much harder. You will feel guilty about getting medical leave with full pay. You will feel really guilty that there were times between treatments and during recovery when you enjoyed being on medical leave with full pay. You will feel guilty that you sometimes feel abandoned and isolated in remission. I mean, you survived, right?
  • Every time someone with cancer has died, you will feel an overwhelming sadness, even when it’s someone you don’t know and especially when that someone is very young.
  • Every time someone says that you should be grateful that you survived, you will question whether you are grateful enough. (That’s a tough one).
  • Other survivors will tell you that there are days that they don’t think about cancer. You will not understand how this is even possible. You will certainly have days when you feel like cancer happened to another version of you, almost in another time or plane of existence, but you will think about it all the same. And, there will be days when it is all you can think about.
  • For better or worse, you will define your adult life in two time periods: Before Cancer and After Cancer. This isn’t a good or bad thing, it’s just something that happens.
  • And lastly, you will vow to enjoy life more after you go into remission. This is easier said than done, but you will try your best.


Two years cancer free!

I’ll keep this one short and sweet…my recent scan came back clean and today is a day to celebrate as I am now officially in remission for two years! This is a big, big milestone as the likelihood of recurrence drops down to less than 10%. I have lived in fear of recurrence, and now I know that statistics are on my side for once!

I still think about the fact that I was diagnosed with cancer every single day. Whether it’s the scars on my chest from the biopsies and port or even my short hair that I’ve chosen to keep post-chemo…there are constant reminders that my life was permanently up ended by this disease. There are also days when I cannot believe that I actually had cancer. I still wonder if it all actually happened…was I really in the hospital for over a week because the mass was too big/too critical to let me go home? did I really not work for all that time? did I really lose my hair? did I really go through the aches, pains, vomiting, and unbelievable fatigue? It seems so surreal sometimes that I have to convince myself that it really did happen.

But, I made it through the whole ordeal to live a very happy life on the other side. It’s certainly a day to celebrate, but also a day to remember that I am very lucky in that I had a highly treatable form and it was responsive to treatment. Not a day goes by that I don’t give thanks for that. I also continue to be inspired by the people whose ordeal with cancer has been more difficult than mine but who continue to have a positive outlook on their lives, like my friend Jessica who just wrote this beautiful post on maintaining a positive attitude in the face of grueling treatments or the woman who calls herself the Bald Ballerina. Her life was put on hold after a stage 4 breast cancer diagnosis but she continues to dance as much as she can.

They’re my inspiration to live the best life possible. They’ve both done nothing less in the face of more trying ordeals and situations and navigated through it all as gracefully as possible – surely, I can do the same. Like them, I know how quickly I can be in a position where my life is turned upside down by cancer, but I’m putting that thought out of my mind so I can celebrate being two years cancer free!

A quick update and change in the post-cancer care plan: Look Mom, no CT scans!

I had an appointment with my oncologist a couple weeks ago, and my blood work looked great. Everything is positively normal. On July 18th, I will officially be in remissions for 2 years, which means the likelihood of recurrence drops dramatically, less than 10% or so. While I’m not entirely out of the woods, I’m in the shrubby under story for sure.

Perhaps more exciting is that my oncologist and I took a big step in adjusting my care for the next three years. In the US, standard remission protocol for diffuse large B cell NHL patients is to have 4 check ups per year (every 3 months) with CT scans twice per year, with a transition to a CT scan once per year and check ups every 6 months for the following three years. However, recent research on patients who have had recurrences shows that only 2% of relapses are detected through CT scans while the remaining 98% are initially detected via patients reporting recurring symptoms to their oncologists. Basically, the scans every 6 months are unlikely to catch this aggressive form before a patient feels it themselves.

I really, really don’t like the CT scans. I feel like I’ve done a million of them – an overstatement, but it’s been a lot more than I’d like. The procedure itself doesn’t bother me at all, even though I get injected with contrast that burns my chest a little bit and makes me feel like I have to pee. It’s relatively quick and painless as cancer procedures go.

It’s just that I get really anxious before and after to the point where I often end up developing psychosomatic symptoms. The only relief I get from “scanxiety” is hearing that the results were negative and that’s only relief for my OCD riddled brain.  I don’t have any anxiety any more about cancer coming back when I don’t have a CT scan coming up, but it’s the process of the appointment itself and the little teeny, tiny voice in the deep recesses of my mind saying, “What if you’re in that 2%? What if it’s back and this scan will show it?” that really bothers me.

I actually would be quite fine with eliminating the CT scans from my life all together. The routine blood work I get at every check up tells me just as much. They analyze my tumor markers each time and the numbers are produced quite quickly. Since I have online access to my records now, I can usually see the counts myself in a day or so. It’s quite reassuring and much less of a stressful process to go through.

According to my oncologist, several facilities have transitioned to post-care plans than don’t involve regular CT scans but more frequent routine check ups and blood work in light of this new research, but my cancer care center hasn’t made the switch yet. Every time I’ve had a check up recently, he and I have discussed this change and how he could see it easily becoming the standard procedure nation wide in the next few years but he wasn’t ready to make the change yet.

That is…until my last appointment. We discussed this situation again and I expressed to him that, unlike most patients who like getting scans for reassurance, I actually don’t find them any more reassuring than the blood work and if anything, the scans cause more anxiety for me. I told him I actually would be fine without getting them for the next three years.

To my surprise, he said, “Okay…let’s try it. If you’d like to make this change, I don’t see a reason why we can’t try it.” He basically set out a plan where I would get one final CT scan to mark the two year post-remission point but for the next three years, I will not get CT scans once per year with six month check ups. Instead, I will continue to see him every three months for regular blood work and check ups and not do CT scans at all.

I will be his first patient to make this transition in post-cancer care, and he did reserve the option to go back to the CT scans in the future, but for now, we will try this out.

He expressed that there are the reasons why this works for me, keeping in mind that it may not be best for everyone:

1. I made it through the first two years post-remission with no issues. The likelihood that diffuse large B cell NHL will return now is very low, 10% or even less.

2. I am completely and totally diligent about attending my check ups and getting blood work done regularly. I monitor my symptoms between appointments. I keep a notebook that I fill with questions before my appointments and when I was symptomatic, I kept a basic log of everything to share with him during appointments. (It’s like I’m a science nerd or something. Oh, wait…) Ultimately, he trusts that I would tell him if I was experiencing symptoms and we don’t need to rely on the scans.

3. I’m relatively young for an adult cancer patient, and since I’ve already been exposed to radiation treatments and hopefully have a lot more life to live, he would like to lessen the exposure to further radiation, if at all possible. This is especially true given that the mass I had was located between my lungs and on top of my heart. My whole chest, including breast tissue, has taken enough of a beating from radiation. No need to put it through anything more than necessary.

4. And, since I’m a young adult woman who had radiation to the chest, I’m at an increased risk of getting breast cancer, so I will need to start getting breast MRIs done every year starting at age 35, oh joy of joys! This is something he and I have discussed in the past. I basically begged him to give me a couple years off from scans on a regular basis. Just a few years of freedom from banging, clanging, talking machines and contrast dyes, please.

Overall, I’m super pleased with this development. I don’t mind going in for more frequent check ups one bit, and I know we can always go back to regular scans if I so choose (which I probably won’t).

So, tomorrow’s CT scan will hopefully be the last for a long, long time.

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 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!