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.

 

Advertisements

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!

Marathon Day of Cancer Care

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Cotton Anniversary

The past two years have been really busy and bumpy, to say the least. In this time, Jeff and I moved (yet again), we continued working at our jobs that are located an hour (in opposite directions) from where we live and keep us both tremendously busy, we’ve had amazing times with great friends and family, we’ve laughed a million times together and, on the flip side, we’ve both endured very serious health issues.

But, most important to me, Jeff and I got married two years ago today, which makes today our cotton anniversary. I’ll be sure to lob t-shirts at Jeff when he gets home tonight from work. We have been together for over 13 years all told. 

There is no one else I would have rather had by my side than Jeff while I’ve been going through my cancer diagnosis and chemotherapy. He makes me laugh every single day and will not let me get down. He’s as much responsible for my positive attitude as I am. He has refused to even let me think about anything but a cure. He’s certainly taken this whole “in sickness and health” thing seriously and I couldn’t be happier about that. Happy Anniversary, Jeff!