How my life has changed…

Well, it looks like almost a year has gone by since I last posted. So much for not letting the blog fall by the wayside as I continue the march through remission.

Frankly and fortunately, there’s not a whole lot to report about my health in tangible terms. I am fortunate to still be in remission from primary mediastinal diffuse large B cell NHL. I’ve had a few CT scans during the past year (two scheduled and one due to psychosomatic scanxiety symptoms and a heavy dose of caution on the part of my oncologist), and all have come back clean. I recently had an appointment with my oncologist that was almost two years to the day from my last chemo treatment, and happily my blood counts looked great. My next appointment will fall right around the two year anniversary of completing radiation, and if I’m still in remission at that point, the likelihood of recurrence drops again to less than 5% or so. I will only have two check ups and one CT scan per year for the next three years, and then I will be considered “cured”. It’s all really kind of amazing.

Although I haven’t been as active on here as I would like, I am staying in touch with the cancer community and current events, especially issues surrounding blood cancers. As a patient in remission for almost two years, most of what I deal with now are the emotional and psychological effects so blog posts and articles related to this are of particular interest to me.

A month or two ago, a really great article was posted in the NY Times blog by Suleika Jaodad, a young leukemia patient who recently went into remission. It is an insightful and honest look at what life can be like after cancer. While our paths and outlook are not entirely the same, like Suleika, I’ve struggled with the emotional and psychological side effects of cancer and treatment. Reflecting on this article, and listening (for probably the 10th time) to a wonderful talk given by a hilariously funny, honest, and gifted co-worker of mine, Ann Velenchik, entitled, “How Cancer Changed My Life…and Didn’t”, made me think a lot about how my own life has changed in the past two years, both practically/logistically and emotionally/psychologically, and how it hasn’t changed.

(Let me preface all of this by saying that one constant in my life as a cancer survivor in remission is that I preface almost every comment, or even thought, about my own cancer experience with, “I know I’m very lucky to be in remission, but…”. I’m not going to do that in this post but please know that the underlying genuine sentiment is there. It is exhausting to feel like you have to validate/qualify every thought, feeling, or statement you have about your own cancer experience by announcing that you know you’re lucky you didn’t die.)

My friend Ann asserted in her talk that while some things have changed in her post-cancer life, many things have not. In my experience, this is true to some degree. I am back at work full time. I have bills to pay and mouths to feed (they’re the mouths of our two cats, but still). Most day to day interactions are similar to those of my pre-cancer life in that they don’t revolve around, or involve, cancer. I have to clean the apartment, I have to do laundry, I have to grade papers, and I have students who I love but who can simultaneously drive me batty. Basically, the day to day is normal and generally ho-hum.

Very little has changed about me physically besides the fact that I discovered I REALLY like keeping my short hair, and chemotherapy and radiation have apparently killed my metabolism. I lost 40 lbs. in a few months about a year before I was diagnosed after transitioning to a low-carb diet. I gained all of that back and then some during treatment. Emotional eating and not being able to move will do that to a person. The trouble is, I’m now back on the same low-carb diet and added in walking on an almost daily basis, and the scale still isn’t budging an ounce. I feel good internally, but it’s not showing up in terms of weight loss, which is SO frustrating. I know I’m not alone in this among cancer survivors either. Cancer can really make you feel ugly, if you let it.

On the other hand, I feel like a lot of things have changed in my post-cancer life. I’ve felt a remarkable shift in my outlook and what I want from the rest of my life. This sounds cliched, I know, and oddly beautiful in an Eat, Pray, Love sort of way, but it’s not always ideal. While I have this renewed sense of wanting to get out and “Do, Do, Do!”, this doesn’t necessarily jive with how Jeff and I approached life pre-cancer. That can be really hard to rectify, especially because I would like to “Do, Do, Do!” with other people, whether it’s Jeff or other friends but I don’t really know how to initiate that very well. I wouldn’t say that I have a bucket list per se. In fact, like my friend Ann, I don’t really like the idea of having a bucket list. This makes it sound like I have this static check list of things that I must do, and if I don’t, my life will be unfulfilled. I’m always adding to my list of things I’d like to do or places I’d like to go. I just struggle with making it happen.

Unfortunately, I’ve also found new and exciting ways for my anxiety to manifest itself (not surprising). Scanxiety sets in the week or two leading up to a scan and the days between a scan and my check up with my oncologist. I’m obsessed with my overall well-being and constantly monitor every pain, bump, rash, and sleepy day occurrence. However, I’ve now asked my primary or oncologist for a referral to specialists for a couple of things that are bothering me that likely have nothing to do with cancer, like a constant ringing in my ears, but when I get the call to schedule an appointment, I end up deciding not to go after all. I just don’t have it in me to visit yet another doctor and have yet more follow ups and tests. The thought is exhausting, and I’m sure this is a subconscious (or maybe not so sub-) avoidance tactic, because I’m afraid that a seemingly benign symptom could be due to something more serious.

As I’ve mentioned before, I struggled with anxiety/OCD prior to my cancer diagnosis. Yet, I had a remarkable sense of clarity and calmness during my diagnosis, treatment and recovery. I’m sure there’s some clinical psychologist who would love to get their hands on my brain, because I think having OCD allowed me to so singularly focus on doing what I needed to do to get well that there wasn’t the room in my brain to obsess over anything else. I wouldn’t say that I obsessed over getting well, but I think I was so tired and had such an immense sense of resolution regarding my position in life during that time that I couldn’t focus on much else and didn’t care to. It was as if my life had been categorized with a big, old CANCER stamp and nothing else could shoehorn its way into my mind.

Quite frankly, I yearn for that sense of clarity and calm now. I hoped it would stay with me, but it is long gone. I would just love to feel that sense of calm again and I don’t really know how to get there without a catastrophic life event. Consider me unadventurous, but that’s one thing I don’t want to “Do, do do!” again.

My sense of self has changed. That cancer stamp branded me, and I’m definitely a different person coming out of the experience than I was going in, probably in ways that I still don’t understand. What I want from life has changed, I think. I want to have more fun, I want to be more passionate about everything important in life, I want to be the best possible version of me that I can be. I also, probably unfairly, want more from the people in my life. I knew how to be a cancer patient – and quite honestly, I was a really good cancer patient. I think I’m having trouble figuring out how to be me after cancer, and what to expect from the people in my life.

There isn’t a day that goes by when I don’t think about the fact that I had cancer. Sometimes, my thinking about it revolves around the fact that it feels like it didn’t happen to me at all. Did I really have cancer? How could that have possibly happened to me? How is it possible that life could return to normal in some way? On the other hand, some days, having cancer is all I can think about, especially when I’m coming up on an appointment or I have a scan or I’m just generally not feeling well. Why did that happen to me? Why did I survive and so many other people are not as lucky? Why is cancer so seemingly random? A random whiff of windshield wiper fluid reminds me of the burn I would get in my nose from the “red devil” IV push during chemo. I get a look at my scars or radiation tattoos in the mirror. Even the short hair that I love reminds me that I only discovered I like having short hair because cancer didn’t give me another choice.

Yikes, this all sounds like a lot of griping from someone who should be really grateful. Here’s the bottom line, I guess – I am grateful. I’m happy to be cancer free. My life is different in a lot of ways now, for better and worse. I suppose I’m now just lucky to have the time now to figure it all out.

 

My Truth About Cancer

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

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

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

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

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

Well, golly gee, problem solved!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And that is my truth.

 

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.

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!

Doctors and Nurses

With my last scheduled chemo treatment coming up tomorrow, I’ve been dealing with some anxiety. You would think that I would be completely excited and ready to face it head on, but for whatever reason, I get nervous before every treatment. In any event, I’ve been thinking a lot lately about how lucky I am to be under the care of amazing doctors and nurses at a great hospital and outpatient cancer center. My chemo treatments have been relatively straightforward, and I really attribute this to the fact that my oncology team has done everything they can to make it as painless as possible.

I am very fortunate to live close to a major university’s teaching hospital, and when I started on my current insurance plan, I made the conscious decision to choose a primary care physician whose main affiliation was at that hospital. My thought behind this was that if I got seriously sick, I wanted to end up in the best possible hospital in the area. Unfortunately for me, this became a reality in November, and I thank my lucky stars that I made the decision years ago to go with a PCP at a teaching hospital.

Jeff was in a smaller community hospital for several days about a year ago, and in comparison, I think there are a number of advantages to being treated at a teaching hospital.

1) The doctors on staff at a teaching hospital are usually faculty members at the associated university’s medical school. This means that they are teaching medical school students and/or residents in some capacity. As an instructor at a competitive liberal arts college, I know that teachers on this level are generally very good communicators as they need to be able to explain things clearly to their students. This also benefits their patients as the doctors in teaching hospitals are more likely to clearly explain what’s going on to their patients in such a way that things are not overly dumbed down but are still clear. Being on faculty at a medical school also means that the doctors are likely to be up to date on the most recent research in their field and also have access to clinical trials and new techniques/equipment that are often rolled out at teaching hospitals before other institutions.

2) I was very fortunate in that I was able to obtain a spot under the primary care of an amazing physician who practices at a family care clinic at the hospital complex. There are a number of benefits to seeing a PCP at a teaching hospital. If she orders any tests, they’re all done at the hospital complex quite easily. It also means that she has instant access to all of my test results and records through their computerized system. This has been an amazing benefit while going through my cancer diagnosis and treatment as I don’t have to worry about having files sent from my oncologist to her or vice versa. It has saved me a lot of time and hassle. Also, when my PCP refers me to a specialist, it will most likely be to another doctor on faculty in the hospital complex. Many of the doctors within the complex know each other, at least if only in passing or name recognition, and you can be confident that you’re always receiving the best possible care.

3) If you are admitted to a teaching hospital, you will be attended to by an entire medical team, or even multiple teams, as opposed to several individual doctors working independently. As I’ve mentioned in a previous post, a team is usually composed of an attending (doctor on faculty overseeing residents/med students), residents (doctors who have recently completed medical school and are learning specialties), fellows (doctors who have completed their residencies but are being trained in a specific sub-specialty) and medical school students. While having all of these people come in your room every morning and surround your bed can be daunting (especially when you haven’t showered or put on makeup/done your hair in several days), it is actually to your benefit as a patient. The team approach means that a number of doctors are looking at your case each day and surely if these students are anything like my students, they’re asking a million questions of one another and the attendings. This ensures that every detail of your case gets close attention. Further, multiple teams might be collaborating on your case; this means that you’ll have double the doctors reviewing your case . For example, when I was on the oncology floor, I had a medical and oncology team who conferred each morning before coming to see me. It was also obvious to me that attendings from different teams were in constant communication with one another.

The benefits of the team approach were more than apparent to me in several instances when compared with Jeff’s experience in a non-teaching hospital.

Jeff saw a number of different doctors while he was in the hospital and each time someone new would come to see him, we would have to explain everything over and over again – from his initial symptoms to what we had talked about with doctors of other specialties who came in before them to things as simple as what tests would be run that day or when he would be able to go home. It was all very frustrating and exhausting for both of us. We constantly felt like no one was talking to anyone else as the doctors and nurses often had different answers to the same questions and we always had to say things like, “Well, Dr. So and so said X, Y, and Z” to inform them of what we understood the outcome of previous visits with other doctors to be. Who knows if we were right in passing along those conclusions. In the end, it all just felt like a giant game of telephone involving Jeff’s health and that something could get lost in translation at any point. It also felt like no doctor read his chart until they walked into his room.

My experience in a teaching hospital couldn’t have been more different. Each morning, a medical student or resident from one of my teams would come by to check in with me and see how I was feeling. He or she would then tell me that they were meeting with the rest of the team and they would all come by after their meeting. I would get one unified message from the teams about what the day held for me in terms of tests or treatments, what specialists would be by to see me, and they would also give me an overall sense of how I was progressing. Just having the med student or resident tell me that he was going to relay how I was feeling to the team and that they were meeting that morning to go over my recent test results, etc. to come up with a plan for my day was so reassuring.

I again had this feeling when my oncologist explained to me that he presented my case at a weekly meeting of both hematology and radiation oncologists to ensure that his treatment plan for me (6 rounds of chemo then radiation if needed) was sound. For older patients with diffuse large B cell NHL, the treatment recommended is often 3 rounds of chemo then 3 rounds of radiation but given my younger age and the location of my mass (in the chest cavity), he wanted to avoid intense radiation. He told me that all of the hematology and radiation oncologists in the cancer center agreed with his treatment plan and said it was essentially a quick way to obtain 20 other second opinions. The team approach definitely afforded him this opportunity that my case might not have received in a non-teaching setting.

When I met with an oncology fellow for the first time, he did ask me to tell him what I knew of my case, like many of Jeff’s doctors. This was not because the fellow hadn’t looked at my chart as he explained he was up to date on my case, but he wanted me to explain what I knew of my case so that he could get a grasp of what I understood and perhaps clear up any misunderstandings. Knowing that this was his reasoning, I was happy to explain what I knew to that point. It’s a classic teaching technique to assess understanding – why don’t you tell me what you know and I’ll help to fill in the blanks? I use it all the time in my laboratories. It’s entirely possible that Jeff’s doctors were doing this, too, but they never explained that to us so it just made us feel like we were wasting our time every time someone new came in to see him. A short explanation of their rationale would have made all the difference.

While being at a teaching hospital has huge advantages, ultimately it has been the care of my amazing doctors and nurses who have gotten me through this, regardless of where they practice.

My primary care physician is amazing. She is unbelievably thorough in that she cares not only for my medical health but also checks in on my psychological and emotional health. She makes sure to get an idea of my work/personal life balance to better understand how my health can be feasibly managed in the context of my day to day life. She visited me several times in the hospital, not as my doctor but just as a friend to make sure I was getting along well. She brought me magazines during my stay and called me several times just to check in. I honestly didn’t think that doctors did things like that anymore.

Prior to this experience, I only saw my PCP for preventative health care. Occasionally, I have had to see a specialist for allergies or migraines. In neither of these cases though did I feel as if my life hung in the balance. However, as a young adult with cancer, I’ve had to place all of my trust in my oncologist to save my life, which is an entirely foreign feeling. Given that, I can’t emphasize the importance of finding an oncologist who you have a good rapport with and who you trust implicitly enough. When you’re facing a cancer diagnosis, the last thing you need is to constantly question whether you’re undergoing the right treatment or if you’re being treated with the best possible care. I think you have to trust your oncologist enough to jump into your treatment with both feet and throw all your faith behind what they’ve prescribed for you. I didn’t really have the luxury of time to obtain multiple opinions but fortunately, I connected with my oncologist in the hospital right away.

I first met my oncologist while I was in the hospital and felt instantly at ease with him. He is friendly and understanding of how difficult a cancer diagnosis is for someone my age, but most importantly he is clear, confident, and honest. He references current data often as well as previous experiences, which are important for me as a biologist. He correctly predicted my diagnosis of diffuse large B cell lymphoma before the final results came in, knew when my hair would fall out to the day, and has successfully treated every side effect I’ve encountered over the past few months. This has made my experiences with chemo much easier.

Most importantly, he and my PCP are both able to admit when they need to bring in the opinion of another doctor when my questions reach beyond their area of expertise. As a teacher, I highly respect anyone on an elevated level in their field who is able to admit that they don’t fully know the answer to a question. When I asked about the specific effects that chemo would have on my fertility, my oncologist conveyed what he knew to be correct and up to date based on current research but also admitted that it wasn’t his field of expertise. He very quickly set up a consultation with a reproductive endocrinologist so I could get all of my questions answered right away. It was that situation that told me I could entrust my survival to him and now I know I made the right decision. I’m so thankful he happened to be the on call oncologist the weekend I was in the hospital and I was placed under his care.

I think the unsung heroes of cancer treatment are oncology nurses. My cancer center tries to keep the pairing between patient and nurse consistent, so I have generally had the same nurse administer my chemotherapy throughout the entire course of my treatment. The nurses often have to balance being a cheerleader with giving patients a kick in the butt when they need it. They learn their patient’s reactions to treatment and try to provide everything they can to make you as comfortable as possible. My nurse and I have developed a good relationship – I know that she loves to sail and she knows I pass out about ten minutes after she gives me Benadryl to prevent hives during my treatment. We have obviously learned very random things about one another, but she keeps me laughing and comfortable during treatment, which is more than I could possible ask for.

Choices

Last night, I had a bout of complain-itis.

I whined to Jeff that I am officially sick and tired of being sick and tired. I’m tired of having excessively dry skin. I’m tired of my digestive tract being in a constant state of turmoil. I’m tired of being so physically exhausted that it takes me two hours to run to the post office and back. I had to shave my head again because the hair that remained is growing in as some sort of fuzzy down feather concoction while the hair that fell out isn’t coming back in yet. I decided to buzz it down to avoid looking like a fuzzy bowling ball with bald spots.

Plus, my next chemo treatment is coming up in about ten days, and I’m really dreading it. I should be looking forward to it, because it’s the last scheduled treatment. I’m dreading the nausea and vomiting and generally horrible feeling that comes for a week after treatment. My body hates these treatments so much now that I actually get anticipation sickness – feelings of nausea and the metallic taste in my mouth – days beforehand. This is common among chemo patients as, apparently, the memory center of brain triggers these symptoms in reaction to the anticipation you have about an upcoming treatment. Joy of joys! Not only do I have to deal with the nausea and metallic taste due to the actual treatment, I also get to feel sick a few days ahead of time, too.

Jeff’s response when I complain about chemo? “Go for the treatment and get better or don’t go for treatment and don’t get better, so really there’s no choice.”

This response makes me think about the choices you have as a cancer patient. When I talk to people about my cancer diagnosis and treatment, it is not uncommon that they respond with, “You’re so brave to go through that” or “I don’t think I could handle chemotherapy” or something along those lines. A lot of people think they couldn’t deal with the treatment and wouldn’t be able to go through with it.

The truth is, they would be able to do it and are braver than they think. In fact, I honestly cannot think of anyone in my life who wouldn’t immediately choose to start chemotherapy as soon as possible if they were in my position a few months ago. Not one. There really isn’t a choice to make in that situation at all.

That said, there is some latitude as far as the type of treatment that you decide to pursue. If you’re like me and completely trust your oncologist, you will go through with whatever combination of chemotherapy and radiation that they think is appropriate. Time was really not on my side – my tumor was growing so quickly that I really didn’t have the option of getting a second opinion, not that I wanted to. Other people opt to seek out second opinions and perhaps land on a different type of chemo that they feel will be better for them and their lifestyle. Some seek out a combination of chemotherapy/radiation and holistic treatments, like meditation, massage therapy, acupuncture, and herbal supplements. Others still believe that chemotherapy and radiation are poisons that shouldn’t be used to treat cancer and instead decide to only pursue holistic/naturopathic treatments. (By the way, before my own cancer diagnosis, the biologist in me used to think these people were just plain nutty. Now, I think every patient needs to do what’s right for them and will get them through each day. To each their own. How very zen master!)

Outside of how you decide to pursue your treatment, the only real choice you have as a cancer patient is about the attitude you have towards your treatment and the disease. I chose to be proactive and positive about 10 minutes after learning I had a tumor in my chest. In my mind, there wasn’t really any other option. What good was it going to do me to wallow in self pity and to pull the “woe is me” routine? Absolutely none. I have nothing to gain by being a sad sack and everything to gain by being my own best advocate in my treatment and being confident from the start that I am going to beat cancer.

Along with that positive attitude comes using comedy as a coping mechanism. Jeff and I do this to deal with pretty much every situation in our lives, good and bad, and my cancer diagnosis is no different. I know this doesn’t work for everyone, and in fact, there has been more than one occasion in which our cancer jokes have been a little off-putting for those around us. Oddly, some people don’t think it’s funny when I say something like, “What? It’s not like I have cancer or anything….oh wait” or Jeff says, “You know what I just realized? Pitbull looks like a 30 year old woman with cancer”. (Actually, I didn’t think that one was particularly funny. I also didn’t like, at first, that he called me Little Stevie when I wore a head scarf for the first time. I think I’m too sensitive about my bald head.) It’s an acquired taste, and I know that. But, that doesn’t stop us from making jokes because it makes us feel better and I honestly think that, ultimately, it does make most people comfortable around me.

When I was diagnosed, I was so set on positivity in my life that I instituted a no crying and negativity rule for those around me. I told my parents and Jeff that anyone could visit or call me, but they couldn’t cry and they couldn’t be negative about my diagnosis and treatment. I didn’t want to hear it – period. I know what all the possibilities are surrounding cancer – bad side effects from chemo/radiation, time away from work and doing things I enjoy, the possibility that my treatments wouldn’t work, and ultimately, I could die from this. I didn’t need to be reminded of any of those things. That said, I also can’t tell people how to feel about my diagnosis and what I’m going through. If they want to be sad about the fact that I was diagnosed with cancer, that’s fine. They just don’t need to bring that attitude in my house. For all intents and purposes, I am the Dikembe Motumbo of cancer.

All of that said, there are times, like last night, when I am frustrated or negative thoughts begin to creep in. This often happens when I’m reading other patients’ blogs or I hear stories about cancer patients that don’t have the best ending. I would be lying if I said I never once wondered, “What if I am in the 10-15% of diffuse large B cell patients of my age group that isn’t cured?” or “What if I’m one of the 10% who has a recurrence?” Fortunately, I’m able to just mentally acknowledge those thoughts and then focus on the positive. A few deep breaths usually help, too.

As I’ve said before, it’s easier for me to feel this way because my prognosis is very good and this is the first time (and hopefully last) I’ve been diagnosed with cancer. It is obviously not nearly as easy when you’ve had a recurrence or a diagnosis of a completely different type of cancer after being in remission for several years. Last night, in the middle of my complain-itis, I watched the season premiere of World of Jenks on MTV. This season includes the story of Kaylin, a woman in her 20’s who was originally diagnosed with Ewing’s sarcoma, went into remission, and then was diagnosed with thyroid cancer, for which she underwent an intense surgery. Unfortunately, she was recently diagnosed with a recurrence of Ewing’s sarcoma. She writes a really great blog called Cancer is Hilarious that chronicles all of this. It is interesting to read about how another patient who is close to my age is going through her treatment for the third time, but mostly, her story reminds me that I’m lucky in that my prognosis is very good and my treatment has been relatively complication free so far. This certainly put things into perspective.

Sounds like Schmancer

I have been trying to get this post together for the past couple of days. I’m having trouble focusing for any length of time and coming up with the words I want to use to express a thought. Maybe it’s chemo brain or maybe I’m just tired, who knows?

As much as I might want to do so, I cannot experience cancer in a bubble, nor can I protect my family and friends from the worry that comes from my diagnosis and treatment. Cancer demands to be acknowledged every day that you live with it. Once you let those closest to you know that you have cancer, they, very understandably, want to know how you are feeling and if there are any updates on your treatment. This means that you will be communicating about cancer a lot, especially when you’re initially diagnosed and throughout treatment. By far, telling those you love that you have cancer is the most difficult part of communicating about cancer.

After talking with the doctor in the ER on that first night and learning that I had a mass of a formidable size in my chest that was probably malignant (the use of malignant and benign in medicine, especially in my case, is humorous – even if my mass was benign, I still wouldn’t have been pleased with having something of that size just hanging out in my chest cavity), I knew that I would have to tell my husband and parents about what was going on. Cancer really isn’t something you can hide from the people you care about.

As I said in a previous post, the only time I really broke down was when I called Jeff to let him know what was going on and to ask him to meet me at the hospital. Poor Jeff has taken some good natured ribbing for my portrayal of him as a bumbling oaf who would be lost in the world without me. While my ego would like to think this is true, I know he could manage just fine…really, he could.

There were a lot of emotions behind that phone call. Obviously, I would never want to cause a person that I love any pain or anxiety. Although we just got married in 2011, Jeff and I have been together for 13 1/2 years (but who’s counting?). The thought of losing him scares me deeply, and I would imagine that this news would make him feel the same way about me. I didn’t like even thinking about that possibility.

I also knew that a cancer diagnosis was going to throw a serious wrench in our day to day lives, and I really hate that. I like routine. I like order. I like knowing what each day is going to bring. Since Jeff and I have been together for so long and have been living together for much of that time, we have a good routine that works for us. (For example, generally he does most of the cooking and I do the cleaning. Bad things, i.e. food poisoning, happen when we reverse roles.) Jeff had some serious health issues of his own about a year ago that have since been basically resolved, and I felt like we were finally getting back into the groove. This whole cancer thing was going to seriously disrupt the routine in ways I couldn’t even begin to predict.

More than anything, that phone call to Jeff was the first time that I had to say out loud that I had a huge mass in my chest and it was probably cancerous. Verbalizing it made it real and that was scary. There wasn’t much I could do to avoid it, though. Calling Jeff but refusing to actually tell him outright what was going on for fear of making it feel more “real” would be the adult equivalent of sticking my fingers in my ears and singing, “LA LA LA LA LA, I CAN”T HEAR YOU!!!” I thought about charade-ing it out (Two syllables…sounds like “schmancer”), but we were on the phone so that wouldn’t work.

I don’t remember much detail from that phone call, other than my voice wavering more than I’d wanted it to, but I do remember asking Jeff if he was okay after I told him everything I knew thus far. He paused for a minute and told me he was stunned but okay. Once I heard him say that, I could pull myself together and move forward.

Since my phone battery died earlier in the day, I asked Jeff to bring my phone charger, among other things, to the hospital. I still had the ER doctor’s phone, so I could have placed more calls but I decided to wait until Jeff got there. I just needed a few minutes to collect myself and my thoughts before I did anything else. I also knew that the next phone call would be equally as hard as the one I  placed to Jeff (if not harder), so I wanted him to be there when I made it. I had to call my parents.

My parents, my sister and I are tremendously close. I had an amazing childhood that was really Norman Rockwell-esque. We took vacations every summer and fun day trips during school breaks. My parents came to every concert, volleyball game, recital and performance that my sister and I have ever had. They drove me back and forth to an aquarium an hour from where we live once per week for almost a year so I could live out my dream working with marine animals. I really do have the best family anyone could ask for.

Now, I live about 200 miles away from my family, but it really doesn’t feel that far because we all talk on the phone together at least twice a week. By that, I mean I call my parent’s house and they both pick up the extensions so we can all talk together. My mom and I usually talk at least 1-2 more times per week just to check in. Telling each other about all kinds of things going on in our lives over the phone was really nothing new for us, but I never expected to have to make the phone call that I was about to make.

Jeff got to the hospital and handed me my charger. I told him I had to call my parents, and he said he already spoke with my dad. He called my parent’s house on the way to the hospital, because he knew two things: 1) my parents would want to know what was going on the instant anyone knew anything (My mom knew that I ended up in the ER for my CT scan, but my battery died right after that call) and 2) I would be an absolute mess if I had to make this phone call cold. By breaking the news to my dad, Jeff was making it easier for me.

Once I got my phone all hooked up, I took a deep breath and dialed my parent’s number. My mom went to a concert my sister had that night and she wasn’t home yet, but my dad picked up the phone. I explained everything to him that I knew at that point as calmly as I could. I found that going into biologist mode when I was describing everything that had happened thus far helped me to explain to my dad that I had a 12-13cm mass in my chest and it was probably cancer. I told him that I was okay and knew that whatever this was, I was going to beat it. I remember saying, “I’m tough and I’m smart and I’m going to be okay”. My dad replied, “I know, but don’t be too smart”, which was my dad’s way of telling me to listen to my doctors and not think I know better. Believe me, that wasn’t happening.

While he and I were on their landline, my mom called my dad’s cell phone to ask if he had talked to me and what was going on. I could hear she was driving on the highway, and worse, I could hear the panic in her voice. (Later, she told me she knew something was wrong. It was mother’s intuition in overdrive and my mother has a very strong intuition.) My dad told her to just come home and they would talk when she got there. I’m sure that just confirmed her worst fears. She doesn’t remember driving home from that point on.

My mom told me later that the moment she got home and my dad told her that I probably had cancer was the worst moment in her life. I can only imagine her reaction – I’m glad I wasn’t there to see it. I’m sure that her thoughts went immediately to my aunt and grandmother (her sister and mother). My aunt died at age 50 after a long and difficult fight with carcinoid cancer and my grandmother was grief stricken by the fact that she outlived her daughter. I’m sure my mom’s thoughts went there because I know that mine did and I wouldn’t ever want my mom to be in that situation.

As difficult as it was for my parents to hear that I likely had cancer, it was just as difficult for me to tell them. It’s relatively rare for people my age (people who are young enough for their parents to be alive but are old enough to have control of their own medical care) to have cancer so there really is no set of guidelines on how to do this. All I kept thinking was that no adult child should have to cause their parents that kind of pain and anxiety, just as I felt while telling Jeff. I didn’t want my parents to have to suffer while I was in the hospital, right before a major holiday no less. I didn’t want them to have to be the ones to tell friends and family at home, to have to go through the whole description of everything over and over again. I would never wish that on people I love so much.

After awhile, I talked with my mom on the phone. My mom is really the person you want around in a time of medical emergencies and difficult decisions. My mom has this unbelievable ability to put her own emotions to the side in times of crisis and deal with the matter at hand in a very clear headed fashion. I’m sure I’ve learned this from her, which is partially why I’ve been able to get through this situation as well as I have. Not surprisingly, she was calm and positive on the phone. I told her I would be fine and she said, “Of course you’re going to be fine”. I’m sure she broke down the moment we hung up, but while we were talking, she was solid as a rock.

I knew my parents would talk with my sister about my diagnosis over the holiday weekend when she was home from school. I talked to her myself the first chance we both had. My sister is amazingly calm and pragmatic. When we got on the phone, she asked if I was feeling okay. I told her I was feeling fine, and I asked if she was okay. Her response was perfect – “If you’re okay, then I’m okay.” That was all we really needed to say to one another about it and then we moved onto talking about her semester at college as if all was well with the world.

My parents also talked with my extended family for me, which left Jeff and me to figure out how to tell our friends. Since we both moved away from home for school and then work, our friends have become a second family to us. There were people that I wanted to call personally, very close friends and/or co-workers who I felt should hear from me directly. I asked Jeff to contact everyone else for me, which he did either on the phone, via email, or Facebook message.

The response we received from friends and family was truly overwhelming, and I plan to write about that at some point. (Although I never wish for anyone to be in my position, it did remind me how lucky we are to be loved so much.) In the early days of my diagnosis, though, Jeff asked everyone other than my parents and a few close friends to contact him directly with messages, bless his heart. This was huge. It took a lot off of my shoulders and it’s probably the best thing that someone can do for a cancer patient – be their point of contact for a group of friends and/or family. He was about to crack by the time I got home from the hospital between all the phone calls and messages he had to return, but I was relatively sane and calm.

If you have cancer now or had cancer, you know that all this communicating can be more tiring than dealing with the cancer itself. This is especially true in the early days between detection of a mass and the official diagnosis. My best advice to someone who is waiting for a diagnosis is to wait to tell people until you have an official diagnosis. So much is happening during that time between detection and diagnosis – there are a lot of tests, scans, and discussions with doctors. When you don’t know much at the outset and you tell people you likely have cancer, you feel the need to constantly update them every time you have a new piece of the puzzle. The more people you tell at the outset, the more people you have to constantly update throughout the diagnosis process. It can all be a lot to talk about several times over in a day for many days. If you are reading this as a family member or friend of a cancer patient (and likely, MY family member or friend), please know that the patient in your life surely appreciates your concern and understands that you just want to know whats going on. However, there are some days the patient in your life may not feel like talking about cancer. They will talk when they’re ready or just plain have enough energy to do it. And please don’t take offense if you weren’t first on the phone call list – cancer makes you unable to think straight. It was not an intentional oversight.

Since I’ve been diagnosed, I’ve come to the realization that it is often emotionally harder to be the family or friend of the patient than the patient. When I was in the hospital, I always knew what I was being tested for, what the results of the tests were, or what the doctors felt the next step should be. I was, essentially, on the front line. Meanwhile, my husband, my parents and friends/family were waiting for the phone call that would deliver news of any kind while they were at work or home. Even now, I know how I’m feeling, while my family is always wondering how things are going each day, wanting to show their concern and know how I am doing but not bother me too much.

This all brings me to the blog and one of the many reasons I decided to start it. Obviously, I talk with Jeff everyday about how I’m feeling and I talk most days with my parents but having the blog has allowed me to share my story and the process with everyone else in my life (and others) without making me feeling like everything is all about me, me, me (and my cancer) all of the time when I see people in person or talk with them on the phone. I think having a blog or an email newsletter, whether it’s written by the patient or someone close to them, that gets sent out occasionally is a really great way to keep in touch with the outside world.