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.

 

Transitioning to Life After Cancer

So far, making the transition from cancer patient to cancer “survivor” (I’m not a huge fan of that term yet for some reason) has been more difficult than I anticipated. From last November through the middle of July, my identity was largely wrapped up in being a cancer patient, going to doctor’s appointments and getting treatments. My focus was on getting well, taking good care of myself, and staying positive and that was about it. In the matter of 24 hours, I went from that to being a cancer “survivor”, which means I have the freedom of not being tethered to cancer treatment anymore. That is obviously liberating and exciting (and God, am I grateful) but it is actually scary at the same time.

Sure, I still have a ton of doctor’s appointments and scans coming down the pipeline but recently, I’ve been faced more so with what my life will look like after cancer. I don’t know entirely what this will mean yet. I DO know that this stage of my life means acknowledging that not EVERY medical issue that arises is related to cancer anymore and that I will have to go back to work and become a functional member of society again. (This, in turn, means I will have to wear actual clothes every day – not just my yoga pants, t shirts and flip flops. I considered going back to work in my cancer attire but I don’t think that would be “professional”.) It’s a pretty jarring thing actually and getting used to the post-cancer life isn’t as easy as I thought it would be.

I’ve already encountered my first minor medical issue (although pretty much all medical issues seem minor compared to cancer) post cancer and the realization that anything that now happens to my body may not be not due, or related, to cancer is pretty surprising. I’ve been so used to a whole myriad of odd and unexpected side effects due to cancer that the idea that something isn’t due to cancer really threw me off.

As I’ve mentioned in previous posts, many women go into early menopause during chemotherapy or radiation treatments. This can have long terms effects on their ability to conceive after they go into remission. I was very fortunate in that my period remained regular throughout all of my treatments. In fact, my cycle has been consistent throughout my entire life, for better or worse.

So, you can imagine that alarms went off when my first period after finishing up radiation came two weeks earlier than I expected, followed by another period two weeks after that. This has never happened to me – surely, I thought, it must be due to the radiation in my chest/neck. It seemed quite obvious to me that the treatment affected my thyroid and the hormones it secretes into the blood stream, which then threw off my cycle. I mean, I haven’t gone to medical school, done an internship, residency and fellowship, or practiced medicine for a number of years or anything, but quite clearly, cancer was to blame. For the past 10 months, cancer has been to blame for everything so why would this be different?

Imagine my shock and surprise when my radiation oncologist, who I had my first follow up with not long after this anomaly, turned this possibility down out of hand.

“Well, we didn’t radiate your abdomen and I would only expect those sorts of issues if we did so” was his response. 

I’ve never been 100% enamored with my radiation oncologist. He is a specialist of specialists, who I have found are typically singularly focused on one very specific area and don’t care much to hear about everything else. But when he said this to me, it took a lot to hold myself back from reminding him that a) I’m not an idiot and b) I was the one of the radiation table so I think I would realize that the giant machine wasn’t rotating around my abdomen.

I was so distrustful of his response that I called my hematology oncologist’s office. I spoke with his nurse who said she also doubted that this whole thing was due to treatment but she said she would check with him. A little while later, I had to finally come to the realization that not every medical issue from here on out will be due to cancer when he also confirmed what my radiation oncologist had said.

Ultimately, I ended up going to see my primary physician, who ran a full battery of blood work and did an exam. Everything came back normal, so we’re just chalking all of this up to extreme stress finally catching up with me. (This is a topic for another day, by the way.)

Honestly, I felt like I got dumped by my oncologists. I was no longer their priority. I felt like I got pushed off onto my primary physician (who I love) like a cast off. I know I should be so happy that I’m not on their radar right now, but the relationship you develop with your oncologists, as the people who are very much responsible for not just taking care of you but saving your life, becomes tight knit pretty quickly. Just like that, with one clean PET scan, they’re over it and moving on. Moreover, I had to now come to grips with the idea that not every medical issue that pops up for the rest of my life will be due to cancer or related to cancer, and especially, is not a sign that cancer has returned. I think it will take quite awhile before that feeling goes away.

As I write this, I am also thinking a lot about my return to work tomorrow. I teach at a liberal arts college, and academics typically dictate their own schedule when it comes to returning for the upcoming year so long as we’re there and prepared for the start of classes. We all typically set our own return dates, and I’ve decided to go in tomorrow.

This is a bit early for me in a typical year, but I have a few reasons for wanting to go back so soon. I need to bring in my letter stating that I can return to work to HR and I need to get a parking sticker for my new car. Truthfully, I could do these things later in the week or next week when most faculty will come back, but I really wanted to have a quiet day when very few people would be around so I can settle in and get a few things done. It sounds cowardly, but I’m planning to go in through a back door and hopefully see as few people as possible so I have a day to just re-acclimate. And air out my office…I’m really hoping I didn’t leave a lunch bag in there. I left the Friday before Thanksgiving thinking I’d be back the following week and obviously that didn’t happen.

I’m quite nervous about going back for a lot of reasons. I don’t want to feel overwhelmed when I see my co-workers again after 10 months of being on leave. They have been so supportive but I also know I’m going to have to answer questions and go through the explanation of everything many times over, which any cancer patient/survivor will tell you is exhausting. This will happen again when students return, and I really don’t want to be known as that “Professor who had cancer”.

Speaking of exhaustion, I am legitimately concerned about my ability to actually get through the day. Once classes begin, my lab sections will run for 3.5 hours three times per week. As a dry run, I helped my husband in his office last week and was mainly doing office work. I only made it through 2 days before I felt extreme exhaustion and physical fatigue. I’m truly concerned about my ability to physically get through a lab where I am lecturing, talking with students and walking around to observe what they’re doing. I can try to pace myself during class, but there’s no getting around the fact that it will be difficult. I also don’t know how I’m going to manage teaching, prepping for classes, meetings with faculty and students and keeping up with all of my grading while still maintaining everything at home. The thought of it all is overwhelming.

I love my job, and I’m very fortunate to have it and I know this. However, I’d be lying if I said I’m 100% enthusiastic about going back to work for practical reasons. It has been really nice to be at home, recover, relax and have a life while still getting paid full time. I never had to worry about a doctor’s appointment conflicting with my work schedule. I could run errands whenever I’d like, take a nap in the middle of the day, watch TV, read a book, sit in a coffee shop and read the paper, or really anything I’d like. The freedom to relax, especially since I’ve finished radiation, has been really nice and I must say that I’m not looking forward to the stress of 1+ hour commutes each way, coordinating my schedule with Jeff’s to make sure I can pick him up on time, grocery shopping and meal planning on the weekends with all of the other crazies, cramming appointments into nights and weekends and feeling like there’s never enough time to do anything. I’m just not looking forward to returning to that kind of lifestyle, although I know that my employer will not continue to pay me while I recover at home forever.

And so, I’m packing my work bag (the one whose contents show what was going on in my life 10 months ago – exams and papers that were never graded, meeting notes that I didn’t have a chance to follow up on, and books I wanted to read that I never touched again) and making my lunch to re-enter society tomorrow. Life as a cancer survivor now begins.

 

Excellent news! (And the emotional aftermath…)

For those of you who are friends with me on Facebook or in “real life”, you have already heard the great news that I am officially in remission from diffuse large B cell non-Hodgkin’s lymphoma!!

I got my most recent PET scan on July 15th, and all went well as it did the last time. It’s really not a difficult process, and it’s good that I don’t mind it because I’ll need one every 6 months for the next two years and once a year for the following three years.

The wait between the scan and my follow up appointment with my oncologist wasn’t too bad for the rest of the day on the 15th and 16th, because I know it usually takes the radiologist at least 24 hours to read the scan. My anxiety was rising by the morning of the 17th and I was at full tilt by the evening, although I tried not to show it. I was really hoping my hematology oncologist would give me a call with good news. Last time, he didn’t call because the results showed active areas and I needed radiation, so I couldn’t help but think this time around that he didn’t want to break bad news to me over the phone, hence no phone call. By the morning of the 18th, I could barely contain myself while I was waiting in the exam room for my doctor and I had actually resigned myself to the idea that the cancer might not be completely gone.

All of that washed away though when my doctor appeared in the door way of the room with a huge smile on his face and he said, “I have great news for you!” A wave of relief came over me and I was all smiles while he explained that my PET scan came back completely clean. In fact, he had received the confirmed results and films from the radiologist around 8:30pm the night before and he debated calling me but figured he should hold off until my appointment in the off chance that I didn’t answer the phone. He didn’t want to leave that information in a voicemail and thought it would be too scary if he just said, “Jocelyne, please call me back.”

Besides, he said, “I really wanted to tell you in person to see the look on your face!” I love that my oncologist and the nurses are just as excited about good news as I am. I would imagine that my oncologist doesn’t have many opportunities to deliver great news like this so he probably enjoys them just as much as his patients.

While I was basking in the glow of the good news, we talked about how extreme my case was and how lucky I was that I was in remission. To put things in perspective, my oncologist told me that he has another patient who is a few years younger than me and she had a smaller mass in a similar area. Same form of cancer, same course of treatment – R-CHOP and radiation. We were both healthy prior to diagnosis. I went into remission, but he had to tell her just the day before that the radiation did not eliminate the remaining cancer cells in her mass. I got to walk away from the cancer center on a cloud, barely believing that I was done with treatment. She walked away knowing that she’s probably not even half way through the process, now looking down the barrel of the gun at another set of treatments using a more experimental and harsher chemotherapy. My oncologist told me that he is so happy for me but can’t help but constantly think about why the treatment worked for me and didn’t work for her. I can’t help but think about it either. Occasionally, I get a pang of survivor’s guilt but I try to push it out of my head. I am so thankful that I’m in remission, I really am, but I can’t help but think about all the other cancer patients – some who I’ve met and many I have not – who aren’t so lucky.

More than a week has passed since I got the news that I’m in remission. Truthfully, I don’t physically feel that different. I’m still fatigued, and my fingers are still numb. I’ve been having more memory issues lately in terms of word recall and remembering where I put things. Acid reflux is still a pain in the neck (literally). However, the pain in my shoulders and rib cage from radiation inflammation is gone and I’m able to breathe a little bit more easily. I know that these symptoms will ease up over time but it could be a long while before I feel like myself again and I may not ever feel exactly the same.

The truth is, I’m not entirely sure that the fact that I’m in remission has completely sunk in yet or if I’ll ever feel this sense of extreme elation that I thought I would feel. Intellectually, I’m elated because I know the cancer is gone, but I don’t think I’ve caught up emotionally yet. I’m tremendously grateful to everyone who’s helped me through this process and that I am one of the lucky ones who has gone into remission. There are no words to describe that feeling. I’m proud of myself for getting through it as I have. I suppose, though, that I thought I was going to be singing from the rooftops, telling everyone I know that I’ve survived the experience and I really haven’t done that. Jeff and I obviously called family and emailed friends/posted on Facebook, but I just don’t feel giddy or elated about it all as I thought I would. I keep thinking that my bout with this isn’t nearly as difficult as that of so many others, although my oncologist keeps reminding me that I was actually in a dire situation when we first met, so this perhaps isn’t as momentous to me because I don’t feel like I went through as much as other cancer patients. Maybe I’m just not giving myself the permission to celebrate fully because of that? I don’t know.

I’ve also tried my best to compartmentalize and battle on through my experience with cancer, not allowing my emotions to get in the way or cloud my judgement regarding treatment or how I was feeling physically. It’s entirely possible that this will all hit me like a ton of bricks one day when I least expect it. I’m also still physically connected to this experience by my portacath, but I have the removal surgery scheduled for Monday. I think I’ll begin to feel like I’m actually not in active treatment anymore once I see that port outside of my body. I won’t be physically tethered to cancer once that’s done.

I also know that I will still see my oncologists for a long time and that the greatest likelihood of recurrence for my form is the next two years so perhaps I can’t completely allow myself to feel the release of relief yet because I know I’m not entirely out of the woods.

Mostly, I think I’m just beginning to feel out what life after cancer will entail for me. I will go back to work in less than a month and I’ll try to resume a normal life. I do feel like cancer has changed the way I prioritize things and I want to spend my time doing things that make me happy and fulfilled. I don’t want to spend my time on things that stress me out or make me unhappy anymore but I don’t know what that will mean in a tangible sense until I resume my life as it was before cancer. I’ll continue to write about my experiences with this in the meantime and hope everything sorts itself out.