Not As Easy As It Looks

I haven't been able to write. I still don't know if I am able to write, but I'm going to give it a try. I'm not certain why it's been so difficult. I think it's a combination of not wanting to dole out difficult news to those that read this and of the memories that flood in every time I open this blog page. But this is my outlet and this is my honesty. I haven't been feeling "inspirational" or "heroic" or "positive." For really the first time, everything has caught up with me.

I have been living with focused blinders on and now am suddenly feeling all the punches from nearly three years all at once. I've gone at this with sheer determination and I know that what I am writing here will come as a surprise to many, but I am asking for your understanding and support. I know that this is not what always appears on the outside. But I believe that it is important for everyone dealing with their own medical issues and for those watching a loved one go through it to understand that we can't be smiling all the time and that it gets very tiring to hold it all together. I think that that's okay. But I don't think that it's easy to admit.

Life has been very difficult over the past month. Things have been more difficult for me to handle than they have ever been. I've been dealing with a lot of anger, frustration, and feelings of defeat and helplessness. I'm uncertain and uncomfortable. I'm unfocused and unstable. I get very sad and very mad and very frustrated. I'm finding it much harder to pull out of the low places. I'm finding many less places of elation. I resent other people and get wildly jealous of their happiness and wish desperately to find my own again. I feel like I cry all the time, but at the wrong times.

I hate being on treatment again. I hate that I have no idea if it's working. I hate the feelings that the Hodgkin's disease is flaring up. I hate the fear of GvHD. The Revlimid has been primarily well tolerated except for tremendous fatigue; I am so tired all of the time but so anxiety ridden that I can't sleep in the way I need to be sleeping. My eyelashes have thinned again, nearly all of them that I worked so hard to re-grow after transplant have been showing up on cotton balls and on my pillow. I again have the eyes of a cancer patient and it's incredibly unnerving.

A New Line on the Resume

You can't beat the convenience of working in the hospital where you're getting treated, that's for sure. But at times it can create a strange colliding of worlds - worlds that I may otherwise want to keep separate. Today I went from a meeting in high-backed chairs in a board room with several key members of the hospital right to the cancer center where I slunk into a chair in the waiting room to wait for my shot with the rest of the patients. In my suit, heels and Hartford Hospital name badge I know that I stick out among the others.

Sometimes it's hard to let myself transition between those two worlds. At times I have to make a very conscious effort to pull myself together. Now that my treatment is almost over I get very sad seing other patients. I saw a woman yesterday in the cancer center who was my age with four young daughters and her husband there with her. The family was so adorable and her kids were running into the bloodwork room hugging the nurses and giving them pictures they had drawn. It nearly broke my heart to think of this woman going through all that I have while trying to stay strong for her little girls. I tried to stay focused on the story drafts I had brought with me to review while I waited for my shot but it was nearly impossible to hold back the tears. Even just being there for a quick shot you feel vulnerable and helpless. The Neupogen shots burn like crazy and leave me achey and sore but with a deep breath and a Band-Aid I get through it. I tucked the printout of my blood count paperwork under my meeting folder and headed back to my office - several squirts of Purell along the way. I've learned to swallow the lump in my throat, take my patient hat off, put my employee hat back on and get back in the groove. And I am so grateful that I have that opportunity. If my "patient hat" was the only one I was wearing during this whole experience I never would have made it.


I really never considered not working during my cancer treatment. From the moment I was diagnosed I knew that if I could physically do it, I would keep my life as "normal" as possible. Over these past five months I've learned that normal doesn't exist and I'm happy about that. Normal is boring. Instead, let's say that I've been able to keep my life as "uninterrupted" as possible and being able to continue with my career has certainly helped that.

I'm lucky enough that the type of work that I do -- writing, editing, design, websites -- can be done remotely and with the digital world that we live in I can feel like I'm still part of the team sending e-mails back and forth just as I would if I were actually in my office. And I'm lucky enough to have a boss and a team that are more supportive than I ever could have imagined.

Now that I'm in the home stretch I've been at the office more - being a little more daring with my immune system, less worried knowing that the cancer is gone. I'm realizing that I need to ease into things and go easy on myself. I do a lot of internal kicking of myself after I feel like I say dumb things or miss office jokes. It's hard to be patient with my brain which processes still a little slower than it used to. Multitasking requires more work. I'm looking forward to the chemo brain effects fading. However, having chemo brain has actually taught me to be more effective. I am more focused than I ever was because I am more conscious of being focused. I am more organized than I ever was because I'm overly paranoid about losing or forgetting something. I am more diligent in rereading, editing, giving a very careful eye as I have lost that (what could be hasty) confidence in my skills. I keep detailed "To Do" lists and file all my notes, which I continually go back and review. My writing flows much easier than it ever has - maybe becuase it's abit more liquid up there in my head. I also have a much better perspective. I'll never again allow myself to get stressed over finding the right words for a headline or because I can't get a webpage to render correctly - I now know what's really worth stressing over. Call me crazy, but I think cancer has been a good thing for my career.

The one part that is tough is being the hairless kid at the meeting table. I don't even think about it within my deparment, but it does set in when I meet new people I may be working on projects with. I have a feeling that the scarves I wear are a pretty obvious indicator that I've been going through cancer treatment, but I always wonder what people are thinking. Do they treat me differently because of that? Do they doubt my capabilities? Do they think that I had some fluke accident where I singed off all of my hair? Do they look at me with pity and think that I'm on my way to the grave? It's times like that where I question whether I should have gotten a wig, but I know for me that I would have felt more uncomfortable with that - always worried that it was crooked or didn't fit right. I feel awkward even wearing lipstick. I've always been the au natural/mascara-and-lip-gloss only type so I suppose it's appropriate that the same would go for my choice of headwear. The tough part is that my hair isn't instantly going to grow back when I'm cured. There are many weeks of scarf wearing to go ... .

Despite all of these insecurities, what I've found is that people don't even react. During all of this I have never felt that I've been treated differently because I have cancer, that I've missed any opportunities because I have cancer, that people shied away from me or gave me breaks because I have cancer. Maybe it's because I work in the most empathatic setting you could pick, amid doctors and nurses who fully understand the realities of disease. Whatever it may be I know that I am extremly lucky to have been able to feel accomplished and keep learning and growing in my career throughout this fantastical world that is "cancer."

Cancer does not mean that you have to end your life as you know it. Sure, you'll have to make some major adjustments, but it does not mean that you have to curl up in a ball and await your fate. It's amazing to have witnessed first hand the strength that we all hold within ourselves and this is what allowed me to keep doing the things that make me happy despite my disease. That's not to say that there aren't days when you can do nothing but lie in bed because, believe me, there certainly are and being in a ball is the best thing you can do for yourself. Any time I was feeling really low my Dad would tell me to "dig deep." I've dug deeper than I ever knew I could and discovered things about myself I likely never would have without facing cancer.

A fellow Hodgkin's patient shared with me something that someone told him: "cancer is a thinking man's disease." You have an awful lot of time to think about life, about death, about your place in the world. The key to making it out of it alive is to be able to keep those thoughts in check and balance the big thoughts with the simple ones - like how much I love ice cream. For me, keeping my mind stimulated (and distracted when the heavy realities become too much ) has been just as important in my recovery as the chemo meds.