My Truth About Cancer

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

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

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

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

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

Well, golly gee, problem solved!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And that is my truth.

 

Great News with Oddly Mixed Emotions

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Giving Thanks for an Anniversary

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

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

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

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

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

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

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

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

http://youtu.be/baHYCpXKP0s

An Update…

There really has not been much to report since my last radiation treatment until I had a great visit with my hematology oncologist yesterday. I’ve decided that he is essentially the best oncologist I could have ended up with for this whole process for a variety of reasons, and being assigned to him as a patient was really a function of random luck – he was the on call oncologist over the weekend when my biopsy results started coming back when I was in the hospital back in November. When I briefly expressed my thanks yesterday for all he’s done so far, he was quick to remind me that we’re not out of the woods yet and I can thank him when I get a clean scan – spoken like a true doctor, hedging his bets.

We covered a lot of ground yesterday. My blood work (complete blood cell count, white and red blood cell counts, neutrophils and B cell counts, and LDH and uric acid levels) looked great overall. According to my blood, I’m back to “normal”, or at least where I was when I started this whole shindig. I’m hoping my blood spreads the message to the rest of my body soon because I’m still feeling fatigued and have some shoulder and swallowing pain from the radiation. For all intents and purposes, though, I’m not immuno-compromised anymore so feel free to sneeze on me the next time you see me. It won’t kill me anymore, although I might get a cold, which would stink.

I then asked him a question I had never really thought to ask before – why did my mass not spread elsewhere? I’ve been reading an excellent book by Siddhartha Mukherjee called the The Emperor of All Maladies: A Biography of Cancer. It was a Pulitzer Prize winner in 2010. If you have any interest in cancer whatsoever, it is a fascinating read. Dr. Mukherjee writes about all of the discoveries made since the 1500’s or so about cancer – what it is as a disease, how to treat it using surgery, chemotherapy, hormone therapy and/or radiation therapy, the role of viruses in cancer, and how different forms are vastly different from one another among many other things. It’s brought up so many questions for me but this was the one that really stuck out, especially since I’ve connected with other diffuse large B cell patients who had much smaller masses than me but they spread to other sites quickly.

As a reminder, I was diagnosed with diffuse large B cell non-Hodgkin’s lymphoma with a primary site in the mediastinum (area between the rib cage and the lungs). My mediastinal mass was 13cm or so in length and it started in the lymphatic system, which is essentially a network of spherical nodes connected by ducts that runs throughout the entire body. The nodes are all interconnected, so it is unbelievable that none of the cancer cells hanging out in my chest migrated via the duct system and starting going into overdrive in other parts of my body. There are several places not far from the mediastinum where the nodes are more concentrated so I began to wonder if my armpits were somehow inhospitable for cancer? Is the area above and below my clavicle unwelcoming? Does lymphoma not like my neck? What’s the deal here?

Don’t get me wrong – I’m not complaining. One gigantic mass was more than enough for me, thank you very much, but as a biologist, I can’t help but think about these things. Who better to ask than my doctor about that, right? (The poor guy gets put through the ringer whenever I have an appointment, that’s for sure. He said he would be concerned if I didn’t have my little notebook out filled with questions for each appointment.)

I asked him this question – why did the cancer cells stay put? His short answer was, “Jocelyne, if I knew the answer to that question, I’d be a millionaire” but he explained that it likely had spread to micro-sites – in other words, cancerous cells likely inhabited other areas of my body but they were perhaps in small enough aggregates that they couldn’t be picked up on a CT scan. Fortunately, we caught it all early enough that those micro-sites hadn’t grown enough yet to be detectable.

This led into a bigger discussion of my diagnosis and treatment plan. He explained that the stages of diffuse large B cell NHL generally aren’t as crucial in terms of successful treatment and cure than it is for other forms and that varying amounts of R-CHOP rounds are very effective for all stages. This is in comparison to a disease like breast cancer where stage 2 is curable while stage 4 is often terminal. For reference, in the case of lymphoma, stage 1 patients have a single localized mass either above or below the diaphragm (the muscle that divides the chest cavity and the abdominal cavity). Stage 2 patients have more than 1 mass but they’re gathered above or below the diaphragm. Stage 3 patients present localized masses above and below the diaphragm but they’re not widespread, and stage 4 patients have widespread masses above and below the diaphragm. There are also a and b levels of each stage that denote severity/size.

I was technically a stage 1B patient – my mass was large but localized to one area. However, he explained that there is a push to classify diffuse large B cell NHL with a primary site in the mediastinum as its own form of non-Hodgkin’s lymphoma because it behaves differently than diffuse large B cell that presents in other areas of the body. He said that a notable majority of the patients who develop mediastinal large B cell are women in their 20s-30s. It requires more rounds of chemotherapy to knock down relative to patients who have similar sized diffuse large B cell masses in other areas of the body and a greater percentage of mediastinal patients require radiation after chemotherapy. In fact, mediastinal large B cell is being referred to more as its own form in Europe but the American cancer community isn’t quite there yet. If it was considered its own form, he would suspect that I would be perhaps at a stage 3 or so.

After this whole explanation, he just looked at me and said, “I didn’t really answer your question, though. The truth is, we don’t know why a mass of your type stays localized but grows to such a formidable size.” I’m totally okay with that answer. In fact, I expected it but curiosity urged me to go ahead and ask anyway.

After my last radiation treatment, I met with one of the center’s registered dieticians and we discussed a number of topics, including the importance of eating organic produce and all natural meats. This is a topic that probably deserves its own post and maybe I’ll get there somewhere down the line. Ultimately, the dietician felt that eating a produce based diet (not completely vegetarian but skewing more towards vegetables and fruits with lean protein) is the important thing to focus on in a “cancer survivor’s diet” (her words, not mine…I mean, isn’t this the diet we should all be following anyway?). However, if you can afford to purchase some or all organic, it certainly can’t hurt. The jury is still out on how much it will help to prevent future bouts with cancer. If you have to make choices for budgetary reasons (because let’s face it, paying $5/lb for organic apples is bonkers), splurging on organic thin  skinned fruits and veggies is the way to go as they tend to soak up more pesticides.

I asked my oncologist about this and he generally agreed, although he thought the splurge would be better served to go towards all natural/hormone free chicken. In the same breath, he said there’s no real data to show that eating all natural and organic would make a significant different in recurrence rates and he didn’t count out the possibility that we’ll find out 10 years from now that eating “organic” was just a load of bunk, as he put it. For now, I’m going to wash all of my produce thoroughly and buy the most natural chicken that I can and hope for the best.

My oncologist also reminded me that we don’t know what caused my case of cancer. Likely, it was a combination of environmental factors plus a roll of the genetic dice and some random chance thrown in for good measure. You can drive yourself crazy avoiding ALL of the things that could, maybe, possibly, cause cancer. Considering that keeping stress levels low is important as well, he recommended that I just do my best to avoid obvious sources (smoking, smokers, tanning beds, sun exposure without sunblock, tons of red meat, excessive alcohol…you know, the fun stuff) and try to eat as healthfully as possible.

From there, we moved onto scheduling my restaging PET/CT scan…this one’s the biggie as it will tell us whether I have any remaining active cancer cells. I finished up radiation on June 13th, and my radiation oncologist had suggested that we wait 2-3 months (!!!) before a restaging scan. Radiation causes inflammation of the tissues in the area receiving radiation and those areas can cause a false positive on the scan if you don’t leave enough time for them to go down. Thankfully, my hematology oncologist felt that was a bit too long of a wait and his previous experience suggests that four weeks is enough time to avoid a false positive. He said, “Why wait that long if we can figure out what’s going on in there much sooner?” I like the way he thinks! So he scheduled the scan for July 15th and I’ll meet with him on July 18th to get the results.

Those three days will be pure agony, but it will be worth the wait if the scan comes back clean. I don’t know exactly what emotions will fill me that day if it does come back clean. I was so excited to finish up radiation as you can see from the pure bliss experienced while eating my celebratory ice cream cone:

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Jeff and I have been together for almost 14 years now, and he said that moment was the happiest he has ever seen me in our entire relationship. This included college and grad school graduations and our wedding day, and quite frankly, he is right, although our wedding day is a very close second, so I don’t even know what I will feel if my oncologist tells me that I’m cancer free on July 18th.

I do know that I will celebrate, and with much more than an ice cream cone!!

What a difference a day makes…

Short of the day I was diagnosed, I think Wednesday (the day of my last post) was the lowest point in my cancer treatment. I was upset and beyond frustrated with the whole process.

However, my treatments have been much better over the past few days. Apparently, there were some equipment issues earlier in the week and a few patients scheduled just prior to me who have quite involved treatments that took longer than anticipated. On Thursday, I was in and out in about half an hour and on Friday, the radiation therapist was waiting for me outside of the dressing room and we went directly to the treatment room. I walked in the clinic at 2pm and was on my way home by 2:20pm. Next week, I switch to 11:00am appointments, so hopefully this speediness will continue.

More importantly, I met with my radiation oncologist and his resident on Thursday, and they provided me with a summary of my treatment program. The resident put the program together and it was approved by my oncologist. They presented it in grand rounds to the entire radiation oncology department and it was confirmed there as the best course of action. Because my mass was quite large to start and the active area and scar tissue is still relatively large and in an area overlying critical organs, my radiation oncologist decided it would be best to also consult with a doctor at Harvard Medical School who is an expert in the field of radiation oncology specializing in large masses in the chest cavity. She also agreed with the program, and as was the case with my hematology oncologist, I greatly appreciated their ability to acknowledge that they sought multiple opinions about my case.

Ultimately, the program includes 22 treatments total. The first 17 treatments (including the four I had this past week) will focus on the entire area of scar tissue and the area that showed up as active on the PET/CT scan, about 5cm. They are treating the scar tissue to ensure that any possible rogue cancer cells in that area are killed off. The final five treatments will focus solely on the active area. The program is fairly complicated as the total dose of radiation and the dose per treatment had to take into account the known values of radiation that the heart and lungs can withstand as well as the fact that the type of chemotherapy I had a few months ago, RCHOP, can negatively affect heart function on its own.

Ultimately, I’ll be done with radiation on June 13th as the treatment days can’t occur on weekends or holidays. My radiation oncologist feels that it won’t make sense to do another PET/CT scan for at least 2-3 months after the completion of treatment. Radiation inflames tissues and can cause false positives on the scan if it is performed too soon after the completion of treatment. It looks like I won’t know for sure whether I am cancer free until the middle of August or September, though my radiation oncologist is very confident that this program will eradicate the remaining cancer cells.

I’ll see my hematology oncologist on Tuesday, and I have a number of questions for him, including when he thinks I can return to work given that we probably won’t do a scan until August or September. I’m fairly certain he will give me the go ahead to go back for the fall semester once my radiation treatments are done.

Of course, the question that I have to ask is what will happen if the scan does not come back clean. I’m scared of the answer in some regards but I need to know what the plan will be in that case and how I can balance that with the rest of my life. My radiation oncologist’s optimism gives me a good amount of optimism as well since I know oncologists are not prone to saying outright that they’re very confident in good results unless that is, in fact, the case. I’ll put my faith behind that as well.

Lessons learned (so far) about getting radiation

On Friday, I had an appointment to go through a test run of my radiation program. During the test, they took an X-ray and CT scan of my chest to make sure the mass hasn’t changed shape/size. Since I was there last, the physicists and dosimetrists created a program of specific angles and doses for the beams and the radiation therapists essentially performed a test run of that program and took some measurements to make sure everything lined up properly.

For whatever reason, getting radiation is a more abstract/off-putting process and one I feel less prepared for than chemotherapy. I think this is because chemotherapy is essentially just receiving medication to treat the disease in the whole body as you would for any other disease. The thought of high energy beams being aimed into my body to kill cells in a specific spot seems kind of out there and is much different than the chemo process.

In any case, I learned a few lessons the other day about getting radiation that might be helpful for other cancer patients.

1) Most importantly, DO NOT slam your thumb in your car door when parking your car right before your treatment. This will make a not so great experience even worse.

Yes, I did do this. I closed my right thumb, about half way down the nail, in my car door. Fortunately, I didn’t slam it too hard but my nail turned purple almost immediately and my thumb swelled up to about three times its normal size.

Because I’m silly about things like this, I didn’t tell the nurses about it when I went down to the radiation department. Instead, I struggled through the whole appointment with my hand shaking and throbbing in pain.

This also made me realize how important thumbs are – as a biologist, I probably should have realized this a lot sooner. Opposeable thumbs aren’t a significant evolutionary adaptation for nothing!

This was completely evident when I met my radiation therapist and she showed me the dressing room so I could change out of my top and bra into a gown. She said she would meet me in the waiting room when I was done. I’m sure she thought it would take me about 2 minutes tops. Not so. I can now tell you from experience that unhooking a bra is next to impossible without using your right thumb. I managed to pull off a contortionist act and slid it over my head to escape the blinding pain of putting any pressure on my thumb. Meanwhile, I was making all sorts of noises – grunting, sighing, “ouching”. I’m sure the women in the other stalls thought I was having a serious problem.

Having a dysfunctional right thumb made it tough to get changed beyond that but I finally got it all squared away. I must have been in there for awhile though since my therapist was waiting for me right outside the dressing room door, not in the waiting room. Had I not been so stupidly proud, I could have just told her I was struggling because I slammed my thumb in my car door. But no…I didn’t want to make a scene and would rather let her think I’m incapable of changing the top half of my body with any sort of urgency.

2) That said – don’t wear jewelry or complicated clothing. I will have to change out of whatever I wear on top each time I go into for radiation because the therapists and nurses need to be able to see the tattoo markers under my arms and on my chest. Since I have to get radiation every weekday, I want to make the process as quick as possible so I’m there for as little time as possible. If I wear necklaces and anything other than a t-shirt, it will just prolong the process.

3) Get used to being adjusted and groped a little bit. I must say that my therapists and nurses (I think there were about five people in the room) were really sensitive to keeping as much covered up as possible. However, there is a certain amount of exposure and poking/prodding that goes along with this process.

They asked me to lay down on the board and the molded pillow made during my last session. They told me to “lay heavy” and they would do all of the work to position me exactly as needed. This meant nudging my upper and lower body in all sorts of positions to get me in exactly the right spot. As a cancer patient, you have to learn not to be modest and you can’t get upset with the process of being touched, positioned, manipulated and maneuvered.

4) Stay still and hold on for the ride. Once I was positioned on the board, they asked me to grip two poles on the board to keep my arms over my head and out of the way. I was then told that they would leave the room and start the machine. The machine rotated around me and the board moved slightly underneath me several times and within about 30 seconds, it was all done.

5) Radiation treatments themselves are pretty uneventful. It’s not as if some crazy green laser beams cross through your body and you can feel it doing its thing. I couldn’t see anything coming out of the machine, nor did it make much of a sound. I mean, give me a little something to make me feel like something is going on – a little whirring, a little beam, something.

Once the test was done, I was robed back up, I changed and I headed home to ice up my thumb. I learned from the nurses that I am now scheduled for at least 17 treatments with a note from my radiation oncologist that I will likely need more but he will schedule later on in the process once he gets an idea of how I’m responding to the treatment. They explained that he will give me the details of the physicists’ and dosimetrists’ findings when I see him for my next appointment on Wednesday. In the meantime, I start my treatments on Tuesday. Hopefully, I won’t smash any other fingers in the doors next time.

No one said it would be easy…continuing side effects and radiation prep

As much as I try to remain positive and not get annoyed with having cancer, there are days when it’s really difficult to keep up the positive attitude. The past few days have been particularly trying. The numbness in some of my fingers has become more persistent. I can’t feel the tip of my middle finger on my left hand (this wouldn’t be so bad if I weren’t left handed) and that numbness is progressing down towards my palm. When I wake up each morning, both of my hands are tingly and take awhile to “wake up”. If I clench my hands to write or grip the steering wheel of my car with either hand, I get a sharp, nerve-based pain in my palm and a tingling sensation radiates out to my thumb, index and middle fingers. I also can’t bend my arms for any period of time (for example, as needed to talk on the phone) or my fingers fall asleep. Now, I either walk around like a mummy with my arms totally straight or deal with numb fingers. I’m constantly doing jazz hands to wake my fingers up, which totally makes me look like a deranged hairless dancer without a stage to dance on.

More concerning is that my fatigue has intensified over the past few days. I’ve been taking 2+ hour naps after breakfast. I need at least one large coffee to stay awake during the day, not to just boost my energy. Last week was busy while I was home visiting family, but not so much that I thought I’d be out of commission for this long. I’m also still gasping for air if I walk any more than 20 feet. I know my stamina will improve over the next few months but I’m getting impatient.

Some of my frustration stems from the fact that I’m not actively undergoing any treatment right now and yet I know I still have active cells hanging around in my chest cavity. That’s not to say that nothing is happening – preparations are being made by my physicians for my radiation treatments as I’ll describe below, but I feel like I’m not doing anything productive to get better which is driving me bonkers.

So about that radiation situation…

About two weeks ago, I met my radiation oncologist and his resident. I liked both but it’s completely evident that the resident is terrified of my radiation oncologist. I met with the resident first and he was cool, calm and collected. Then, I met with the oncologist and resident together wherein the resident looked like he was going to have a nervous breakdown. Essentially, the message was the same, breakdown or not. I will likely need 15 sessions of radiation. I’ll go each weekday for a session that will last 15 minutes door to door. The actual radiation process is equivalent to getting an X-ray in terms of the time (less than a minute total) but the beams will be stronger in intensity.

How does radiation therapy work and how is it different from chemo?

The National Cancer Institute has a great website that clearly describes radiation therapy, but essentially it works by using high energy beams (X-rays or gamma rays) to damage the DNA of cancer cells. The idea behind this is that if a cell has damaged DNA, it will not divide thus causing the cancer from proliferating or spreading elsewhere. Radiation tends to be quite localized to a specific active site to avoid damaging cells outside of the active site whereas chemotherapy is systemic, injected into the bloodstream.

After the appointment with my radiation oncologist, I had a simulation scan. The nurses and radiation therapists placed me in a CT scan to obtain another clear view of the mass and to mark the locations on my body where the beams will hit during each treatment. To ensure that those beams hit the internal active sites and as little of the surrounding tissue as possible each time, I was marked with permanent tattoos under each arm and on my sternum. They look like tiny dots made with a blue pen. I asked the nurse if she could get creative and give me some roses or something – no such luck. Boring blue dots for me! It is imperative that you hold the same position and have the beams hit you in exactly the same spot for each treatment, hence the tattoos. They made a pillow mold of my head and back to use during each treatment as well.

My radiation oncologist, physicists and dosimetrists are currently determining the dosage and specific method they’re going to use to administer the radiation using the CT scan taken during the simulation and my PET/CT scan from a few weeks ago as guides. The physicists will design a specific program for me that will include the angles of the beams and the angle of my body on the board under the machine to ensure that they hit as little of the surrounding tissue and as much of the active mass as possible. I’m supposed to hear from my radiation oncologist this week so he can let me know how successful the program will be. I will undergo a practice run on Friday and if that goes well, I’ll start radiation treatments on Monday.

The treatment will be localized to the active site of cells so the side effects should be minimal, although that’s a relative term for a cancer patient. The most common side effects are skin irritation/burning at the application site, sore throat/acid reflux since the mass is close to the esophagus, and fatigue…surprise, surprise.

Jeff and I, of course, wanted to know if I would become some radioactive superhero, like Phoenix, Invisible Woman, or Spiderwoman. I could live with those side effects, but we’re not going to hold our breath.

There are some other serious side effects that are less common. Since the mass is close to my lungs, there’s a small chance of pneumonitis, which was explained to me as an inflammation of the lungs that causes a feeling of pneumonia. The bigger concern is the secondary development of sarcoma of the lungs or breast cancer. Neither would likely appear in the short term but could develop in the future. Of course, if either does develop it will be next to impossible to determine whether it was the radiation treatment for NHL that caused it.

Of course, I have to take this information into account when proceeding with radiation but really, the likelihood of a secondary cancer 30 years from now can’t scare me off from being cured today. If I don’t get radiation treatment, the other options would be to wait and see if there’s a further decrease of the mass in three months or discuss the possibility of other forms of chemo. Stronger combinations of chemotherapy medications can be used in the cases when patients with diffuse large B cell don’t respond to RCHOP, but my hematology oncologist has assured me that we don’t want to go down that road unless we absolutely have to. Since my last round of chemo was pretty tough, I’m going to plan on avoiding more chemo unless it’s really necessary.

Even if I do get a secondary cancer down the line, I have to put my faith in the advances research has brought forth in the past 60 years or so and know this will continue well into the future. I truly believe that we will have a much better handle on treatments, diagnoses, and the mechanisms that drive uncontrollable cell proliferation in the future. Radiation therapy wasn’t even thought of as a possible cancer treatment until the early 1900’s and wasn’t used viably until the 1940’s or 1950’s. Most of the studies that have focused on the secondary effects of radiation have used subjects who received radiation 20-30 years ago when it was not possible to localize the beams on such a specific area as they are able to do now. We won’t know for another few decades whether the procedures for radiation today cause secondary cancers at a significant rate. By then, I’m confident that treatments for most cancers will be even more effective than they are today. I’ll have to put my faith in that and go ahead with the radiation therapy so I can at least live the next 20-30 years cancer free.