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.

 

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

Life in Remission – Physical Aftershocks

Clearly, going back to work full time has seriously infringed on my blog writing, and that stinks if you ask me. If I’m not at work, I’m driving to/from work, catching up on work at home, cooking, cleaning, running errands, playing with our kittens (fun! fun! I have absolutely become a crazy cat woman) or sleeping. In fact, most of my free non-work (or doing-things-to-make-Jeff-and-Jocelyne-be-functioning-members-of-society) time has been spent sleeping or resting. I even had trouble staying up to watch the Red Sox in the World Series, and that should tell you something, especially if you know me in “real life”.

So, I have amassed a list of topics that I have been wanting to touch on for the last month or so. Forgive the haphazard nature of things, but I’m going to try to write about what’s been going on lately over a couple of posts. My physical health is still at the forefront of my thoughts on most days so it’s what I’ll address first.

I had my first 3 month post-remission checkup a few weeks ago with my hematology oncologist, and everything turned out great, as did my appointment with my radiation oncologist about a week ago or so. During the checkup with my hem/onc, I had blood work to check on complete blood cell counts and tumor markers, like lactose dehydrogenase (LDH), that were elevated while I was sick. My hem/onc feels confident in looking at these values and assessing whether I’m still in remission every other checkup, as opposed to doing CT scans every time, and I’m confident in his confidence. I will have a CT scan every six months, so I’m scheduled for my first post-remission CT scan in January. It is called a re-staging scan, but I’m sure I’m not alone in feeling like this is not optimistic terminology. Why can’t they call it a “remission confirmation” scan? In reality, scans only catch about 2% of recurrences of diffuse large B cell NHL, according to current research. This is largely because the masses characteristically grow so quickly that it is usually patient symptoms that tip off clinicians as to a recurrence or relapse as opposed to scans or even blood work so it really comes down to me checking in on my overall health and how I feel everyday that is the most important.

Even though I’d been feeling okay coming up to the most recent appointments, I’d be lying if I said that I wasn’t worried right before both of them for some reason. My original symptoms were extreme fatigue, pain behind the shoulder blades, profuse and unexplained sweating, heart palpitations, and trouble breathing, not just shortness of breath. They were all well beyond the norm and completely abnormal. However, right before this follow up with my hem/onc, I was seriously concerned every morning that I woke up overly tired (welcome to the life of a cancer patient – you almost always wake up tired or get tired at some point in the day, even in remission) or I sweated a lot/was short of breath after climbing up a flight of stairs. Never mind that my aerobic capacity is next to nothing because I’ve been laid up for a year, and let’s be honest, I’ve never been the picture of physical fitness to begin with. (The President’s Physical Fitness Test that we had to take in elementary school gym every year still gives me nightmares – sit-ups were the bane of my existence.) Yet, with every labored breath and every drop of sweat, I couldn’t help but think (and still do think, even after the appointment) that It had come back. I have to constantly remind myself that these day to day reactions aren’t severe – they’re normal.

My hematology oncologist put my mind at ease, as he always does. It wasn’t surprising to him that I was anxious and still not feeling great. In fact, he said that he would have been surprised if he walked into the exam room and I told him that I was feeling fine. He reminded me that I’ve been through a lot over the past ten months and it’s going to take a lot of time to get back to “normal”. Since my blood work looked good, he is confident that I am still in remission and things are fine for now.

In truth, I don’t know if I’ll ever be able to let go of the “for now” part of that statement. I just feel like I’m waiting for the other shoe to drop whether it’s in the near future or years down the line. Somehow I can’t shake the feeling that my “battle” (I hate that term but can’t think of anything better) isn’t over yet. I’m hoping that feeling will go away once I’m out of the two year window when recurrence/relapse is most likely, but a lot of patients/survivors have told me that feeling never really goes away, so we shall see.

Being back at school and teaching full time is generally a good feeling. It is very tiring, though. There are still days when I feel like I got hit by a truck, and I’m experiencing a lot of bone and joint pain that my hem/onc delicately attributed to “de-conditioning” and side effects from chemo and radiation. There are some days where the pain in my hands, especially, is excruciating. I never thought myself to be one for a massage – frankly, the thought of a stranger touching me in any way creeps me out – but there has been more than one day lately that I’ve thought having a massage would be positively heavenly. The pain and fatigue is slowly ameliorating, though and I’m sure I’ll get better as time goes on. My hem/onc had a patient with diffuse large B cell who was a professional cyclist prior to diagnosis and it took him two years to get back to normal, so I think I’m doing well, relatively speaking.

In terms of other long term side effects…my periods seem to have finally gone back to normal. That’s too much info for some, I’m sure, but fertility problems are a reality for many female cancer patients. I still have digestive tract issues, including some that “flare up” and make everything very uncomfortable. I’ll leave what exactly is going on to your interpretation. Those sorts of issues will probably stick with me for the rest of my life, but at least I have a life to live, and Preparation H and I are forever entwined, I suppose. While I will say that having cancer has taught me many things, many of which were good, it has also taught me that when it comes to the physical effects, cancer is a disappointing gift that just keeps on giving.

I am positive that the physical side effects will wane, or at least become a part of my new normal, which I can handle. If being in remission means being a little bit more tired/winded and being occasionally reminded of nagging, but harmless, long term side effects, I’ll gladly take it over the alternative – that’s for sure.

Holy fatigue, Batman!

Since my last post a few weeks ago, I have returned to work full time and I began teaching again last week. I am grateful to be up and about and back at work, although it’s been quite busy. Seeing my colleagues and being welcomed back with collective open arms has been amazing and it is energizing to be around my students again. Most of my students are highly motivated and energetic, which is certainly contagious to an extent. It’s also just good for me to get back into a routine. As much as I enjoyed being a lay about after I went into remission, it is time to become a functional member of society once again.

I’d be lying, though, if I said that the transition has been 100% smooth, and this largely has to do with the fact that I’m tired in a way that I didn’t even think was possible now that I’m recovering and working at the same time.

For those that don’t know, Jeff works an hour south of where we live while I work an hour to the north. We quite often leave the house at 8am (or earlier) and return around 8pm, assuming he doesn’t have an event at work in the evening. Under normal conditions, this leaves a couple of hours for us at night to cook, eat and clean up dinner, do some work/answer emails, and get ourselves ready for the next day before we go to sleep just to get up and do it all over again.

This schedule was beginning to wear on me before I got sick, and in a sick/twisted way of looking at things, cancer gave me a break from that hellish commute and schedule. Now that I’m back at work, talking to colleagues/students all day and teaching three 3.5 hour lab sections a week wherein I’m often on my feet/talking for a majority of the time, I’m pretty much the walking dead right now. I might look okay on the outside, but I feel like this:

walking dead zombie

The fatigue I feel at this point is essentially a combination of the types of fatigue I felt while in treatment. When I was undergoing chemotherapy, I felt like I had weights attached to my arms and legs all the time and it took a tremendous amount of effort to move from place to place. In fact, the thought of even getting up and out of the recliner was overwhelming at times. During my radiation treatments, that feeling was replaced by being so sleepy. Now, I have an amalgam of those two things going on – it takes an extreme amount of effort to move, and then the second I stop moving again, I want to sleep. That’s Newtonian physics for you – a body in motion stays in motion and a body at rest stays at rest.

I’m finding that I can get through about 2/3rds of my lab classes before my body begins to scream at me to sit down and chill out for a second, and I certainly don’t recover by the next morning as I did before I got sick. I’m learning now that I need to rest somehow more throughout the labs, although I find that if I sit down, my legs begin to throb and I have a tough time getting going again. I almost feel like I’m better off just staying “in motion” throughout the entire lab, letting adrenaline carry me through, and then crashing at the end of the class in my office. To that end, I’ve covered up some of the windows and got a comfy chair that enables quick cat naps when I need them. During my last class, I also tried to lean on counters and things a bit more as opposed to fully sitting down.

If I had a dollar for every time someone has told me not to push myself too hard, I wouldn’t need to work anymore. The problem is that It is very difficult to figure out what my body can handle until I try and then moderately succeed, crash and burn, or something in between. I’ve been relatively sedentary for so long now that it is difficult to figure out what “pushing myself too hard” is until it’s almost too late to pull back. At least I can get a sense of what works for me/what doesn’t and adjust from there. There are a few things I’ve learned so far, though:

1) Put a smile on your face and try to look pulled together even if you don’t feel like putting in the effort. Having cancer has taught me many things. One of the most important is the idea that you can’t control what happens to you but you can control how you react by having an overall positive attitude. Being positive generally makes me feel better physically and mentally and feeling good about how I look only boosts my resolve to have a positive attitude throughout my day. On top of that, I find that people react more positively to me and my ideas if I have a smile on my face even when I feel like crud on the inside. That said, keeping all of this up takes a lot of energy sometimes so it can be a bit of a double edged sword.

2) More practically, get rest whenever you can. I’ve learned over the past few weeks to take quiet moments for myself when I can. This could mean that I close my office door, turn out the lights, sit in my cushy chair and try to catch a few winks for 15-20 minutes. It could also be as simple as leaning up against the wall for a few floors during a solo ride on the elevator. If you’re feeling out of breath after you climb a flight of stairs and don’t want anyone to think you’re struggling a bit, read some flyers on the cork board in the stairwell. Why feel like I need to hide that I’m hobbling along? My co-workers have been beyond supportive and really have, in some cases, become like a family away from home. I don’t want anyone to worry that I’m not doing well (I’m really fine – this is all part of the recovery process and is common for most patients) and I really would like to feel “normal” again, as much as that is possible. I also don’t want people feeling like they need to help me more than they already have, and that was more than generous.

3) As a colleague recently reminded me, I don’t need to do things the same way I did before I got sick to have a successful return to work and the rest of my life as I knew it. For example, work emails should, of course, be answered in a timely manner but I should not feel the need to answer student questions at midnight or even the instant they hit my inbox. Essentially, I shouldn’t feel pressure to return to life as I knew it before cancer until I’m ready, if ever, and life will go on without a hitch for everyone else.

Fatigue isn’t the only issue I’m dealing with – chemo brain is becoming more and more of a problem since I’ve returned to work. I’m thinking it may be more apparent now that I need to use my brain on a regular basis. I’ve always had trouble remembering students’ names. That is next to impossible now. I’ve also been forgetting seemingly basic and simple words. There are also times where I have trouble focusing or forming coherent thoughts when writing emails to students or talking to them in class. In probably the most scary and unexpected event so far, I recently forgot how to hold a fork and knife in order to cut my food. I couldn’t remember how I held them – is it fork in the left hand and knife in the right or vice versa? Do I cut in back or in front of the fork? I honestly couldn’t remember this at all, as if it was my first time cutting up my own food. My muscle memory had momentarily escaped me. I ended up having to put the utensils down (probably best for the safety of all around me) and allow my brain to reset itself. Fortunately, everything came back and I enjoyed my chicken Caesar salad. Still, it was a terrifying feeling and I’m definitely going to talk with my hematology oncologist about it during my next visit as I think it might be something that needs to be addressed in more detail.

I also can’t help but get anxious about every sudden muscle twinge in my shoulders or when I  break out into a sweat or have sudden feelings of exhaustion. (This last point means I’m always in a minor state of anxiety.) With every instance of any one of those things, I can’t help but immediately think, “Oh my God, IT is back. The cancer is recurring.” I know, in my rational mind, that while my symptoms were similar to those, they were much more extreme and I felt absolutely awful but my irrational mind can’t help but catastrophize everything. It is a difficult place to be mentally and I don’t know how much I can expect it to change.

Despite all of this, though, I’m very happy to be back at work and thinking about all of these things as cancer patient in remission. There are certainly worse problems to have and I know it will all get better over time.

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.

Waiting for the next PET scan…yet, life goes on

I haven’t been too active on here lately, partially because there really hasn’t been any cancer related news to report and partially because life has been busy with non-cancer related events.

I have my next PET scan scheduled for Monday morning at 8:45am. This is the biggie…the one that will tell me whether the radiation treatments knocked cancer into remission. I won’t get the results until Thursday when I have an appointment with my hematology oncologist so that’s going to be a tough wait. He is very thorough when it comes to the radiology reports, so realistically, he won’t be ready to tell me the official news until Thursday anyway. Typically, the radiologist who reads my scan will call him with a verbal summary and then the radiologist will type up a report based on the films. This usually takes at least 24 hours. My oncologist looks at the films when he receives them and interprets them without looking at the report and then he will compare what he sees with the written report from the radiologist to make sure everything matches up and that there aren’t any discrepancies between what he sees and what the radiologist reports.

I must say that I’m cautiously optimistic about the results this time around. I no longer have persistent pain in my shoulders or trouble swallowing. I have occasional roving pains inside of my rib cage, acid reflux and, of course, fatigue but my symptoms following radiation seem to be reduced. Fingers crossed for good results!

I also know that I’m feeling better mentally and emotionally, because I’m not so focused on just getting through my treatment, but thinking about the future. To that end, Jeff and I have done some things in recent weeks that will impact us in the long term. Jeff would say that these were impulse purchases, but I’ve been thinking about them for awhile and now have the confidence to pull the trigger.

First up, we bought a new car!! I had a 2007 Hyundai Tucson with 160,000 miles on it that I absolutely loved. I just finished paying it off, but my 90 mile round trip commute is now looming. My gas mileage in it was good for a small SUV but not great budget wise for us, considering gas prices lately. It was also due for about $2000 of maintenance work and the car was only worth about $2700. It just didn’t make sense to put that money into an older car that probably wasn’t going to last me another winter. So, when the business manager from the dealer where I bought that car emailed with some good deals on pre-owned Sonatas, I jumped at the chance.

After hours and hours of negotiation by Jeff, I ended up buying a 2012 Hyundai Sonata in Indigo blue. It looks like this one:

ImageI absolutely love it! It has all of the bells and whistles that I wanted and it’s really fun to drive. When we were talking about monthly payments, I must admit that I hesitated and wondered if I should be really be buying a car right now without knowing whether I would be returning to work in the fall. However, I pushed that thought out of my mind, because I know I will be going back and the cancer will be gone eventually and just enjoyed the new purchase!

The other big addition to our lives is this little guy:

ImageMeet Sterling, our 13 week old kitten! Jeff and I adopted him last weekend from a great rescue called East Providence Volunteer Services for Animals. I’ve so badly wanted to have a pet again after many years of living in places that didn’t allow them and since we can’t have dogs here, we decided on a kitten. He is absolutely adorable – active, playful, and cuddly. He has brought me nothing but joy. We love him so much in fact that we’re adopting a little girl to be his playmate next weekend. Her name will be Bergie (after Patrice Bergeron). She definitely chose Jeff when we met them a few weeks ago.

So for the moment, life is proceeding on as normal. Keep your fingers crossed for me next week and I’ll be sure to post again as soon as I get some news!