The Shift

Our American culture is fast paced and somewhat chaotic by nature. Maybe that’s the result of how we came to be Americans, fighting for our liberty from the colonial bondage instituted by Britain. So maybe our history has kept us in a perpetual fight or flight mode. Really think about it. Have you ever been to New York City where it feels like everyone is rushing toward something or on a rural backroad that virtually goes nowhere and still there is this one car that is practically on your bumper. I feel like at this stage in the game we are the country equivalent of an angsty teenager and maybe we are just that, after all our history as a nation is relatively new comparatively. Nations, like people, must undergo shifts to illicit change. After recent events, it is clear that we are in dire need of a major cultural shift. One that identifies the issues affecting us in the now; one that acknowledges that there is much work to be done. Of course that’s never easy, it requires introspection and no one likes to answer the tough questions about themselves.

In light of recent events, I was inspired to watch the documentary The Story of Diana because I needed to see an example of light. She was a truly beautiful soul who used her public fame to raise awareness for those who had no voice. She shifted the world view in a humanitarian effort to spark real change. I can’t say that I would have had the courage to walk through a mine field, even with the plastic face guard and padding; but I would like to think I’d at least get suited up. I feel like as individuals there a number of times in life when we face a ‘precipice’ that requires us to make a shift in thinking, perspective, attitude, priority, something. Think about it, in our younger years that may be finding a new table to sit at in the cafeteria, as young adults knowing when it’s time to get out of a bad relationship even though we still love the other person, or in full fledged adult mode acknowledging that maybe our first career choice wasn’t the right one. Whatever the situation is, it requires some pretty serious thinking.

For me right now, my precipice or cliff moment is figuring out who I am in the wake of my transplant. Some things I know for sure are that I am fortunate and I am loved. Everything after that seems inconsequential really but still a part of the big picture. Until the age of twenty two, I was consumed by my academic studies. I had to do well, not because anyone demanded it of me but because I demanded it of myself. Until my Hodgkin’s, I was consumed by my career. And since the day of my diagnosis, I’ve been consumed by the threat of my cancer even if it didn’t appear that way. I’m not saying that it’s all I thought about or tended to, but it has always been a force to contend with. It completely changed the life I thought I would have, for better or worse. I met Josh again and fell in love, which I might have shrugged off prior because I was too busy with my job and instead I get to be busy planning my wedding (which I already have a giant Tupperware container marked wedding stuff for two years from now). I made peace with the fact that there is a very slight chance that I will ever have children of my own, which was initially devastating. Instead we will continue to have furbabies and spoil the other children in our lives. I also never thought I could sport a Natalie Portman pixie or be without Target for 127 days, thank God for Amazon.  Cancer changes things and anyone who says otherwise has never had cancer or been close to someone with it. But you adjust, it just takes a shift in thinking.

Now that I’ve had a bone marrow transplant, the threat of my cancer is still there but it’s more like a distant storm that only rumbles when I have an appointment or when the ‘Nervous Nellies’ in my life I get nervous if I do anything without a hazmat suit even if it is outdoors. Sort of like a reminder that it could rain at anytime, but I won’t melt if it does. So I’m left with this new normal that requires another shift. I need to find a healthy balance in general, my own personal zen. I haven’t quite gotten it down yet, but I think I’m getting there. For now I get to focus on me, planning my wedding, working from home until January in some capacity, writing, reading, playing with Jax, socializing from my patio and various porches, exercising, asking the tough questions, accepting the shifts, and loving the life I have.

Making Adjustments

As I am approaching day +40 from my stem cell, one piece of advice I might offer other transplanters is to find a way to be comfortable making adjustments. I, like most people, am a creature of habit; so having my routine upended has been somewhat of an adjustment. I went from workaholic and social butterfly to homebody virtually overnight (well a 25 day hospital stay) and it is taking some adjusting. The first week or so when I cam home I found that I was frequently tired and even incorporated some napping. By the end of the second week naps were no longer needed. I found that I’m not quite ready to walk around the block just yet and can only go to the corner and back and that that needs to be enough for now. I also discovered that 2 miles on the stationary bike is easy and it makes up for the lack of walking distance. My next task is to add in some Yoga and hand weights to rebuild what I have lost from years of treatment and deconditioning. As of June 1st, I intend on making it part of my new routine.

Admittedly until now, much of what I have been doing is shamelessly binge watching Netflix and Hulu. Even as we speak Game of Thrones is on in the background (which if you haven’t invested in watching you may want to). It was a much needed break from chaotic year leading to the transplant, where I worked full time amid treatments and appointments as well as maintaining a full social calendar. No wonder why the couch seemed foreign, well that and the fact that we had to invest in a new one per transplant regulations. The last week I was starting to feel unaccomplished, which is not something I am okay with. So I decided to take some initiative and actually work on a graduate class I had been putting off and finish it. It was nice to get back into the game and made me realize that I just need to adjust my frame of mind and set new goals that are not necessarily career driven.

One of these goals is accepting my new normal for what feels like the hundredth time since being saddled with Hodge in the first place. Only this time, I like to think of it as playing for keeps. My commitment-phobe nature sometimes rears it’s head so I recognize there may be somewhat of a learning curve on this, but I am determined that extreme make over on the cellular level was not for naught. Changing my eating habits has been relatively easy, since I have to be aware of what I am eating and where it came from. Since it generally has to be made in my own kitchen it takes the guesswork out of it. Definitely an adjustment from having take out and frequenting restaurants with my girlfriends on a weekly basis. You need to be creative and try new meals or making things in a new way. For example, in order to have ‘raw’ vegetables you have to flash boil them to remove any bacteria this includes tomatoes for a sandwich or celery and onions in a macaroni salad. You also have to pack all of your meals if you go anywhere, so I have reverted to packing a lunch bag on travel days or if visiting. That is by far the biggest adjustment. That and no going to public spaces. For a time I was daydreaming about Target and was actually excited to shop in the gift shop at the hospital. I even order our groceries online through SHOPS4YOU so Josh can pick them up on his way home from work. Like I said making adjustments.

It’s all a new experience and not in a bad way just different. But that’s true of life, the one thing for certain is change. I like to think I embrace albeit begrudgingly at times. This change for me is drastic. After doing a chimerism test which tells how much of my immune system is mine and how much is my donor’s I know that I am 100% her and 91% in regard to T-cells, so the change has already occurred. And that is the first hurdle to jump in this much longer race. I joke that I was able to win the initial sprint and now I have to endure the marathon. Like most things, it is an adjustment whether it’s your pace in a race, a dress for a formal event, day to day life for nearly everyone.

My New Normal

Mukherjee, author of the Emperor of all Maladies, had a patient that exclaimed her life after cancer was all about adjusting to a new normal. There is definitely something to be said for that. I am nowhere near remission (as far as I know), but my current state of living a ‘normal’ life with my cancer (in a cohabiting sense) is an adjustment. Cohabiting with anyone is an adjustment and my cancer and I often argue about who gets first dibs on time. Unfortunately, my cancer often wins by default because most of my appointments are non-negotiable, whether they are treatments or otherwise. I have to admit I find my cancer’s selfishness absolutely annoying, especially when it interrupts a perfectly lovely day to go get poked and prodded instead. Although, I can’t complain too much because at this juncture my cancer is somewhat lest demanding then when we first got together (Boston every three weeks until June, when it becomes every other week). But I suppose that happens, that you learn to adjust, to compromise, and to accommodate each other over time. It’s just like any relationship, in the beginning it seems all consuming but as time progresses you learn exactly how to coexist. Now my relationship with my cancer is obviously dysfunctional, I have to make it work and thus adapt to my new normal.

In addition from lobbying for time with my demanding cancerous partner, I also have to adjust to the little everyday things that come with this relationship. In any relationship there is generally some consideration for your appearance. In my mind I have always been fashion conscious, so that hasn’t changed but my overall appearance certainly has. My cancer forced me to go all Britney Spears during her crazy phase and now it has given me a whole new look. Pre- cancer I had light brown pin straight thin hair and suddenly I have very dark brown ashy wavy course hair that I have no idea how to style. It’s like relearning how to handle your own hair. So now I’m in a phase of trying out new products that I never needed before like styling paste and volumizing mousse and curl control shampoo. Steph always claims it took her nearly thirty years to get the right product and styling down, which means I’ll be in this phase for awhile. I also enjoy headbands like never before, they somehow make my short hair style full of cowlicks and unruly behavior somewhat more manageable. So my new normal also includes a fairly extensive headband collection, they’ll go great with my hundreds of scarves. I also have to be uber conscious about my skin regiment; moisturizers, vitamin e cream, sunscreen, etc. Hodgkin’s creates skin issues as do most of the treatments, so skin care is both a necessity and a process. I don’t think I’ve ever had so many products which add time to both my morning and evening routine. Aside from hair and skin care, my cancer has done very little to impact my overall appearance unless you consider the scaring from my biopsy sites and port and permanent tan on the back of my neck from radiation, but I only notice them when I notice someone else inadvertently staring at them. In other words, they are just part of my new normal.

Now I can acknowledge that prior to my cancer I wasn’t exactly ‘fit’ but I wasn’t exactly out of shape entirely either. I had been an athlete in high school, albeit not a very good one. But still an athlete. And in the months leading up to my cancer diagnosis and the affirmation of our cohabitation, I started noticing how difficult it was to walk up a single flight of stairs. And now after a year plus of treatments my new normal generally consists of taking the elevator when the option is available or reenacting my role as the tortoise in the tortoise and the hare fable. Now I know that slow and steady wins the race, but i will admit I’ve never been all that patient. So I have to rebuild muscle strength and that is going to be a long and slow process. I have been told that the extent of my ‘training’ can only be a 20 minute daily walk to start. I know that is reasonable, but when I set my mind to something I like to go all in so the restraint elements of this are tricky for me. So my new normal has also forced me into a slow and steady pace, but also recognizing the need to make life changes in regard to exercise and food. The food piece has been a learning curve. I ordered cookbooks and pinned a bazillion recipes on organic whole food eating. I stopped grocery shopping and had an organic delivery service bring food to me to help minimize processed foods. I drink a smoothie every morning with vegetable, fruits, superfoods, ginger, tumeric. It has been a whole new way of looking at my diet. This is not a fad but a necessary lifestyle change, so I can keep my cancer from taking up more of my space and time. And I know that these pieces will be part of my new normal even after my cancer.

My new normal looks a lot like my old normal in ways too. I still go to work every day (unless it’s a treatment day). I still have dinner and drinks with friends. I still binge watch Netflix and lounge on the couch. I still spend any chance I get outside with Jax when the weather is conducive. I spend quality time with my boyfriend doing silly things and just enjoying our ‘unexpected’ relationship. The only way my cancer has altered any of this is that I appreciate all of it so much more. So my new normal in some ways is better than my old normal. And once you’ve lived with cancer you can never go back to who you were without it!