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.

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.

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.

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!!

Marathon Day of Cancer Care

I am definitely feeling fatigue from radiation (more on that below) so on paper, my schedule for this past Wednesday was daunting. It really ended up being a cancer care marathon. It was akin to my time spent in the hospital seeing umpteen doctors a day, but instead of lounging in a hospital bed in my PJs watching daytime TV while everyone came to me or I was wheeled by orderlies to wherever I needed to go, I had to hoof it around the cancer center myself to go to a radiation treatment, appointments with oncologists and to get blood work and my port flushed. The whole day made me think that it would be awesome if oncologists and radiation therapists made house calls.

(An aside…I don’t want to end up in the hospital again, but the lazy side of me really enjoyed being wheeled from one place to another in bed while in my PJs. I would love it if Jeff would wheel me from one place to another in a bed but I don’t think I could convince him to do it.)

(Another aside…I put a lot of thought into what I’m going to wear on these treatment and appointment days. I need to wear clothes that are easy on and off for radiation that also allow my doctors and nurses easy access to my port and surrounding skin for exams. I’m definitely of the mindset that if I look as good as I can muster, I’ll feel good (or better) so I try to wear an outfit that gives me some confidence or a mental boost. I ended up going with a black and white chevron maxi print dress and red shoes with my Red Sox hat. I even went so far as to paint my nails a springy mint green and I got a ton of compliments from all of my nurses on that. I made sure to wear makeup, too. This seems like a lot of effort for going to the doctor’s office, especially given how tired I am, but I think it does help my mental state. Otherwise, I’d shuffle around the center looking like a zombie. I might feel like that on the inside but I don’t need to project that on the outside.)

11:00am – I arrived at the radiation oncology unit for my treatment. I changed into my lovely double hospital gown ensemble (one with the opening in the back and the other with the opening in the front). This keeps me from flashing my back to everyone and makes me feel more covered up while going bra-less – something I cannot (and should not) ever do without more than adequate coverage.

I have learned to bring my iPhone and ear buds with me to the waiting room. This lets me drown out Fox News and avoid other patients if I would like. One big difference between the infusion center and the radiation department, as I’ve mentioned, is that you come into contact with other patients with more frequency in radiation. This can be a blessing or a curse. On this particular day, I ended up having a really nice conversation with an older woman who was there to receive treatments for the second time. We talked about how it was going for me so far and what she experienced the last time around. She was super upbeat, telling me that going through this again was much easier the second time around. On the other hand, I’ve also come into contact with older patients who hate that they’re getting treatment, hate the nurses, hate the doctors, hate the wait, hate that it’s cold in the department, hate the snacks available in the waiting room (yes, there are snacks, coffee and water – consolation prizes for having cancer, I suppose) and obviously hate the world in general. Hate, hate, hate, hate, and more hate. I certainly can’t blame them for feeling this way, but the last thing I want is to be poisoned by someone’s negativity. It’s bad enough that I’m getting poisoned by drugs and gamma rays.

11:30pm – I was called into my treatment room for radiation. I got maneuvered, groped (respectfully), and nudged into a very exact position. One of my therapists said, “Here we go”, they all scurried out behind the 6 ft concrete wall and I lay there while the machine rotated around me emitting the rays. It’s gotten to the point now where I know the sounds of the machine and the program sequence so as soon as it’s done, I put my arms back in my gown, get up, and gather my things. I said goodbye to the therapists and headed to the changing room to slather Aquaphor over the areas of skin that get radiated to prevent radiation burn as much as possible.

The radiation changing room stalls include full length mirrors, which are really helpful when I’m trying to apply the Aquaphor to my skin, otherwise it would probably end up everywhere it shouldn’t. This also forces me to look at myself naked in the mirror every day from very odd angles while I try to get the ointment on my tattoo marks. This got me to thinking the other day that one very unexpected benefit of having cancer is the comfort I now have in my own skin. I have to change in front of this full length mirror every day, something I never would have done willingly before my treatments began. Plus, over the past six months, I’ve been forced to be topless in front of all of my medical teams at some point or another during exams, they’ve all felt my armpits and groin for other possible enlarged lymph nodes, I’ve had to talk with them about how my body is responding to treatment and I’ve had to learn to grow comfortable with being examined from every possible angle. After all of that, I really can’t help but feel like the human body is a machine and if you have one that’s working, it’s worth being proud of no matter what it looks like.

(That said, I will be zumba-ing to lose weight as soon as I can breathe normally again. I said I was comfortable in my own skin – that doesn’t mean I’m completely 100% happy with what that looks like. I definitely won’t beat myself up as much from now on, though.)

11:45am – Onto my appointment with my radiation nurse and radiation oncologists. At this point, the only real symptom I’m experiencing due to radiation is fatigue. This fatigue is very different from chemo fatigue, which didn’t make me feel sleepy but made me feel like every part of my body had a 50 lb. weight attached and doing even simple tasks took a tremendous amount of effort. Radiation fatigue just makes me feel very sleepy all the time, no matter how many naps I take or how much sleep I get each night. While I was feeling much better in those weeks between chemo and starting radiation, I’m now back to where I was at the end of chemo – feeling exhausted and wiped out. There’s also the mental exhaustion from having to go in there every. single. day.

My radiology nurse and oncologists were surprised by the fatigue I’m feeling as they all claimed that most patients say that the chemo fatigue is worse than radiation fatigue as if it’s some kind of sick competition. There’s really nothing that can be done to ameliorate this fatigue, although I think the doctor who can figure out how to deal with treatment fatigue for cancer will win many awards. Don’t worry – I support making any doctor who “cures” cancer a saint or a knight or something.

Other than discussing my fatigue, my radiation oncologists just wanted to know if I’m feeling any other side effects from radiation, which I am not. Once I said no, they wrapped things up and moved onto the next room. I like them both, but I must say that they’re kind of the specialists of all specialists – they’re really only concerned with this relatively small area in my body and the skin above it and that’s about it.

12:15pm – I got a break until I needed to get blood work drawn at 12:40pm so I headed up to the Au Bon Pain to grab a bottle of water and a snack. Being in there at lunchtime made me realize that the hospital in which the cancer center is located is a hotspot for young, attractive doctors. I swear it’s a vortex – sucking in any and all attractive medical professionals in a 20 mile radius.

12:40pm – Off to the phlebotomist for a blood draw. My hematology oncologist ordered what he calls a “hem (pronounced heem) screen” for blood cell counts (red and white), neutrophil counts, lactose dehydrogenase levels and uric acid levels among other things. This allows him to keep track of markers for tumor growth without having to CT scan me all the time. Fortunately, the phlebotomists in the cancer center are amazing and can usually hit a vein on the first try. Heaven help you they have trouble – this has to be one of the more painful experiences and results in a really nasty bruise.

1pm – Off to the CNA. She took my blood pressure and commented that it was a little high. Mind you, by this point in the day I climbed upstairs and downstairs and walked a relatively short distance for non-cancer patient me but that distance felt like I crossed the Sahara for the cancer patient me. I sweated all day long and was literally a hot mess, so I would expect that my heart would be pumping pretty hard. She should have been thankful that I didn’t pass out in her patient chair. High blood pressure, indeed.

1:20pm – The second to last leg of the tour – an appointment with my hematology oncologist. Usually, I’m one of many patients sandwiched into his schedule but somehow, I ended up being the only patient that day. This meant we could talk for awhile about my radiation program and treatments as well as how things are going overall.

I was honest and told him that getting radiation was a mental and emotional grind every day and that I am physically exhausted already. Honestly, I much prefer the chemotherapy process to radiation, sickness and all. This didn’t surprise him in the least. He totally understood how I felt and assured me that many of his patients feel the same way. He also recommended staying away from patients with negative attitudes as much as possible (hello, Pandora and Candy Crush on my iPhone!) to keep up my positive spirit. As far as the fatigue, he reminded me that while I made it through chemo with relatively few issues, it did put my body through the proverbial ringer and now we’re barraging it with radiation so it’s completely normal to feel this exhausted.

We talked about some side effects I’m still feeling from chemo – mainly peripheral neuropathy and “chemo brain”. I’m having more trouble with word recall and short term memory lately. It’s a really indescribable feeling as words that are very common for me to use will randomly escape me or I can’t remember how to do something very basic. Yeah, I know we all have memory problems, especially as we age but this is a complete inability to recall information as if it never existed in your brain in the first place. It’s scary but he assured me that it, and the neuropathy, will most likely go away with time.

I also asked about the plans for the future and it looks like we will do another PET scan in late July or early August. We can’t do it too soon after I finish up radiation or else I might get a false positive result. He is very confident that the radiation will eradicate the remaining cells but if anything remains after this scan, we might wait another few months for another scan to see what happens as it could be a false positive or the cells might die off with the remnant effects of radiation. If the area is still relatively large, we have other options for secondary chemotherapy although he said they are “trickier” to deal with and he would like to avoid them if at all possible. Still, it’s good to know that there are options should it not go away this time around or it comes back after a period of time.

This led me to ask him if I could continue to plan on going back to school in the fall and he told me to plan on going back as planned but that there’s a 5% chance that something could come up on this scan. Even so, that doesn’t mean I wouldn’t be able to work or would even undergo more treatment at that point since we very well might take the wait and see approach.

I also asked a question that’s been on my mind for weeks – when can I dye my hair again? My hair is growing in slowly but steadily and feels strong but it’s coming in as a dull brownish gray as a base with gray highlights, if there is such a thing. I’m so close to going without a hat in terms of length but the color is throwing me off. Good news though – I can dye my hair whenever I’d like! No restrictions and I can use whatever products I’d like to use! This might seem really vain and relatively minor but it’s a big victory for a young adult female patient, believe me.

Ultimately, I felt really good leaving this appointment – emotionally anyway. Physically, I was beat. As always, my doctor took the time to answer all of my questions and reminded me that this process is horrible no matter which way you cut it or how well you tolerate it. He reminded me that it’s okay to feel like I’ve been to hell and back, because I have in a lot of ways. It’s just nice to have your doctor validate these feelings for you.

I scheduled my next appointment with him for next month, at which point I will be done with radiation!

2pm – I was sent up to the infusion center to get my port flushed. The nurse called me into her pod and grabbed all of the necessary equipment. When she looked at my chart though, she realized that I was actually two weeks early for a flush so she spared me another poke with a huge needle and scheduled me for a flush in early June after one of my radiation treatments. At that point in the day, I was happy to get a break and headed back down to my car for the ride home.

All told, it was a crazy long, but good day. I have a renewed sense of determination regarding what’s going on and where I’m headed with my treatment. The end of my treatment is in sight, my friends, and all is well for now.

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.