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.

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:

I 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:

Meet 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!