Life in Remission – Physical Aftershocks

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

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

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

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

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

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

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

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

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

Holy fatigue, Batman!

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

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

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

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

walking dead zombie

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

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

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

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

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

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

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

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

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

Transitioning to Life After Cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Excellent news! (And the emotional aftermath…)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Being a Young Adult (YA) with Cancer

In the cancer world, I am considered a young adult patient (YA; someone diagnosed with cancer between the ages of 18-39).  In contrast, pediatric patients are those under 18 and patients who are 40+, I suppose, are just ‘cancer patients’ – no special labels for them. Over the past few months, I’ve experienced many things that YAs with cancer have to deal with that might not be so common among pediatric and/or older patients and since I’m writing on this blog about what it’s like to be a 30 year old with cancer, I should probably touch on some of these issues. I’ve been able to reflect on them a lot more now that I’m done with active treatment, so here we go.

A jumping off point…recently, a column was posted in the Huffington Post.com’s Healthy Living section by a 20 year old woman named Elise Frame who was diagnosed with leukemia, and she equates being a YA with cancer as being in a sort of medical no-man’s land. We are treated in the adult center because of our age, although we face many of the same issues as pediatric patients (concerns about living a healthy life after cancer/avoiding recurrence) and older patients alike (job security, health insurance coverage, maintaining relationships).

I must admit that it sounds like I’ve had a much better experience in the adult cancer center at my hospital than Ms. Frame had at hers. We have psychologists and nutritionists who specialize in working with cancer patients that are available to us at any time. I’ve partaken in art and pet therapy while getting treatments (Coloring with crayons and petting furry dogs really does make you feel better when you’re getting chemo, by the way. You basically revert to a child-like state.). There are numerous social workers and patient advocates available to help you navigate the insurance maze, handle medical leaves, and applying for state aid. Most importantly, my doctors, nurses and therapists are amazingly caring and compassionate people. They seem to love their jobs and have gone out of their way to make me feel as comfortable as possible.

That said, being a YA with cancer has presented its own share of issues that may not be encountered by younger or older patients.

First of all, there’s the simple fact that as a YA with cancer, you don’t often see other patients in your age group at the adult cancer center. I was in active treatment for seven months, and over that time, I saw patients in the center who were relatively close to my age less than 5 times. Otherwise, I was typically surrounded by middle aged or, mostly, elderly patients. Not seeing anyone else “like you” can make you feel really isolated and circus side show-y as you walk around the clinic.

The one thing I craved during treatment more than anything else (other than sleep and to be cured) was to connect with people my age who were going through the same thing. The easiest place for a patient to connect to other patients is in their cancer center while they’re getting treatment. Even a brief conversation with a fellow patient to commiserate can be a huge pick me up in your day. While I didn’t mind chatting with Ethel about how horrible she feels and how her grandchildren are coming by to visit her in the clinic later on, it wasn’t the same as talking with someone my own age who was also getting treatment. When chatting with the elderly patients, I felt like I needed to put on a sweet smile and be overly polite when I really just wanted to talk to someone like I would one of my friends about how horribly sick I felt. As much as talking to my own friends and family helped in some ways, no one really knows what you’re going through as a cancer patient unless they’ve been through it themselves, making connecting with other YA cancer patients all the more important.

My cancer center has support groups that meet once a week or every other week, but it would be really nice if they had a YA specific group. I know of several centers that do this, but if this isn’t available to you, you have to seek out other avenues of support. Fortunately, a non-profit for YAs called Stupid Cancer (www.stupidcancer.org) was formed by a YA patient in 2007. Their website has forums where you can connect with other patients on a variety of topics. They also have a Facebook page and a podcast so you can connect that way as well. StupidCancer also holds a yearly summit to allow patients/survivors to meet and interact and the regional divisions hold smaller meet ups across the country. They also advertise seminars and conferences specifically for YAs with cancer, so it’s a great resource.

Many non-profits/societies for specific types of cancer have support groups and fortunately for me, the Leukemia and Lymphoma Society holds an online chat each week specifically for YAs who currently are undergoing treatment for blood cancers and survivors. I’ve been joining in on that group for a few weeks now, and it’s been helpful to discuss side effects, how everyone deals with different obstacles, and just to feel connected to other patients. This blog has helped me to connect to other patients, too, both through comment sections on other blogs or via email. It certainly helps to connect to other patients in any way that you can.

Medically speaking, there are a number of issues YAs face that might be shared with pediatric patients but not older adult patients in adult clinics. Because the majority of patients in adult clinics are not YAs, the oncologists in those clinics may not be as comfortable with discussing some of these issues as they’re often focused on the effects of cancer and treatments on older patients. This is ultimately why Ms. Frame chose to switch to a pediatric clinic as YAs and pediatric patients alike deal with the reality that having cancer and being blasted with chemo and radiation at a young age can have significant side effects on your health for the rest of your, hopefully, lengthy life. Older patients may have secondary illnesses further down the line, but the fact remains that they likely don’t have to live a majority of their lives with the issues I’ll mention below.

When my oncology team got to the point where they were discussing the side effects of chemotherapy with me in the hospital, my thoughts quickly went to what effects chemotherapy would have on my fertility. As a married woman in my early 30s with no children (although Jeff and I do want to have them), you can’t help but immediately worry that chemotherapy could prevent you from having biological children of your own. (Chemo wreaks havoc on the female reproductive system – it can cause temporary or permanent infertility and early menopause, and radiation can permanently damage the ovaries and/or eggs, if you are radiated in the abdominal region.) In a matter of just a few days, I went from leading a normal life and planning on having kids down the line to being suddenly faced with the prospect that I might not ever be able to have children of my own with Jeff.

A quick, but important, side note here. I really like my hematology oncologist for a variety of reasons – most importantly that he is an excellent physician – but I think one of the reasons I feel so comfortable with him is that he is in his late 30s, only a few years older than me. I have been able to talk with him about all of the potential issues I’m facing specifically as a YA cancer patient, because I know they’re issues he can identify with, even if most of his other patients are much older than me. This is a large part of the reason why I feel so well cared for in the adult clinic.

When I brought up my concerns regarding fertility, my hematology oncologist immediately validated my feelings and concerns. He informed me that about 90% of women my age who undergo R-CHOP keep their fertility and have children after treatment. It might be harder than it would have been, but it is possible. He did say though that there was a possibility that I could lose my fertility due to treatment, so he brought in a reproductive endocrinologist for me to speak with about our options in terms of preserving my fertility and I met with her before I began my treatments. The urgency with which he handled this and the validation he gave my concerns was really important to me. I’ve heard many stories from other YAs who say that their oncologists didn’t feel that the preservation of fertility was as important as starting treatment right away, and I’ve heard of patients who really had to lobby to get more detailed information about their options before beginning treatment. My oncologist recognized that I have a life outside of cancer that could be changed dramatically and permanently if he didn’t do what he could to help me make the best decision, and I am so grateful for that.

(Just for those who are curious…the repro. endocrinologist informed me that our best option for preserving fertility was to freeze our embryos as if we were undergoing the in vitro fertilization process. Apparently, storing embryos, as opposed to solely eggs, is more effective in the long term. There are some downsides to this process, though. The most important of which at that point was that I would have to hold off on starting chemo treatments for about three weeks and would have to inject myself with hormones everyday to stimulate egg production. I would feel even worse than I already did and I would risk the mass spreading or growing in the meantime. Although I’m insured through an employer in Massachusetts where infertility treatments are completely covered by insurance, I was a patient in Rhode Island where it is not covered. Thus, the process would cost a minimum of $7,000. But, I was informed that “storage” of the embryos was “fairly cheap” at $300/year. They would have been stored at a facility in Manhattan. It’s an odd thought – I would be carrying out my life in Rhode Island and our embryos would just be chillin’ (literally) at a facility in NYC. Ultimately, Jeff and I felt strongly that our chance to have children on our own was still good and I really didn’t want to have to wait to begin treatment so we decided against this whole process. Plus, we didn’t want to go into debt on top of everything else that was going on to save some embryos that we might not need.)

I’m hoping to get at least another 50 years out of this body, so I have to think about other effects that chemotherapy and radiation may have on me years down the line. For one thing, I will have to live a good portion of my life getting lab work and scans and checking in with both of my oncologists. That doesn’t sound taxing but the wait in between, constantly worrying if something new will show up or if your old cancer will come back, can be excruciating. Because I will have a longer period of time ahead of me than most other adult patients, I have a greater (although still relatively low) likelihood of developing a secondary cancer from radiation, like breast or lung cancer. I will also have a greater likelihood of developing heart disease earlier in life and may need to have arteries or valves replaced in my heart due to the side effects of R-CHOP. Many of these issues are those that are known to develop 20-30 years down the line, well after many older cancer patients would expect to live. Again, it helps in my case that I have an oncologist who talked through these possibilities with me before I began both my chemo and radiation treatments. Not every YA patient has this opportunity to know what they’re getting into.

While I’m sure that the cosmetic issues faced by cancer patients is tough regardless of age, I think they are tougher on pediatric and, particularly, YA patients. Imagine being a 21 year old young woman without hair, eyebrows, eyelashes, or nails. Imagine that your skin is yellowed and dry and you’ve either lost or gained a tremendous amount of weight from your treatments. It can be demoralizing and debilitating. It’s a time in your life where you try to look your best to attract a significant other and you feel as if you’re supposed to be in your physical prime and yet, you don’t even recognize yourself in the mirror anymore. Having an oncologist who sympathizes with this and can help you plan for hair loss or answer your seemingly superficial questions (like, “When can I dye my hair again?”) is a very good thing, but I fear that not all oncologists in adult clinics are receptive to these types of conversations as they view treatment as the only thing that is important.

There are effects on YAs beyond the medical issues that may not be as prominent for cancer patients of other age groups. As we’ve learned through all of the discussions about “Obamacare”, YAs are more likely not to have adequate insurance as this is a time in life when you may think you don’t need to worry about having a job with good benefits or that it’s more important to get a job/internship doing something you love, even if it doesn’t offer health insurance. On top of that, YAs tend to think that nothing “bad” will happen to them in terms of their health so purchasing private insurance isn’t a perceived necessary expense. Let me tell you, my cancer care, which isn’t all that complex compared to what other patients go through, has been billed to my insurance to tune of easily $500,000 and climbing every day. A colleague of mine had a complex case of leukemia and her care cost over $2 million. Imagine having to cover this out of pocket as a 22 year old intern at a magazine. The fact is, you couldn’t cover. Cancer can financially ruin YA patients if they aren’t prepared with good insurance coverage. Even if they have insurance, it might not cover everything and the co-pays and deductibles alone can be overwhelming. While pediatric patients are often covered by their parent’s insurance or can be covered by state/federal aid programs and older adults are likely to be more established in their careers and have benefits coverage or may be eligible for Medicaid/Medicare, many YAs may not be prepared for this type of disease to hit them and are caught financially off guard.

Further, YAs may be in college or working their first full time job when they’re diagnosed. Managing college classes and living amongst several thousand other people in a dorm aren’t exactly the best conditions for a cancer patient so many YAs are forced to take a leave of absence from school for an undetermined amount of time. They’re then disconnected from their social networks and can feel even more isolated. YAs who are lucky enough to have a full time job are usually at the start of the careers and their position at a particular company might be more tenuous than that of an older adult patient. Job security is a clear issue for YAs with cancer and it can be difficult to find your way back into the workforce again after you go into remission.

Finally, there are many social issues that YAs with cancer must deal with. As I’ve mentioned before, telling my parents and my husband that I had cancer was the hardest thing that I’ve had to do. No adult child should have to have that conversation with their parents – it’s absolutely gut wrenching. I am lucky in that my husband and I have been together for 14 years or so, so bumps in the road like this are manageable for us. However, I could imagine where a YA with cancer who has a “younger” relationship might struggle and it would be even more difficult to find a significant other during or after treatment as your self esteem can really bottom out between the hair loss, surgery scars, and weight gain/loss that can come with treatment.

This isn’t to say that pediatric or older adult patients don’t go through some or all of these issues, but I think the YA population is really dealt a tough and complex hand when they receive a cancer diagnosis. I have been SO lucky to keep a constant salary and benefits, to know that my job will be there for me when I’m ready to come back, to keep steady relationships with family and friends, and to have medical teams that understand what I’m going through. Unfortunately, not every YA is so lucky. In the future, I’d love to see more support for this group and I’ll continue to do what I can to get the word 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!!