Life is Good

Dear Friends and Family,

For several weeks I’ve tried to think of a good way to sign off from my blog, and I think now I know why it’s been so difficult. I viewed signing off as a metaphor for being done with cancer (or at least my treatment)—but it turns out I’m not done, not even close. Truth is, I’ll never be “done” with this disease, but thankfully over time I have learned how to cope with my reality. I’ve learned it’s OK to have a good cry when I need it and when a good laugh is all I need. A good cry might come in the days prior to my bimonthly trip to Duke when I feel so exhausted from always having to deal with cancer-related junk. A good laugh might come from Dean when he reminds me not to forget my hair as we pile into the car to go anywhere. As a bald 40-year old woman (not by choice), it’s important for me to be able to look in the mirror, take a deep breath and still smile. 

Cancer is a part of me, however I will never let it define me. I have a great deal of disdain for cancer, but it can't outweigh my love of life. Despite all of my health-related hardships, my life is good. I have so much left to do, say, and be. Maintaining a positive attitude for my kids, my husband, my family and especially myself, is how I get through. I try to not let my daily thoughts get too absorbed with the “C” word. I’d much rather focus on the very normal aspects of my busy and satisfying life: doing homework with Alex, racing Dean to the top of the stairs at bedtime, going on a date night with Erin, planning next summer’s family adventure, or occasionally engaging my educator mind in the classroom as a substitute teacher. These are the essence of things that keep my happy heart pumping. 

This will be my last blog entry--for a while anyway. It’s not that I don’t have anything left to say, but I feel it’s time to focus on taking care of myself, both body and mind. I reluctantly erased the end date for taking a daily chemotherapy pill from my calendar in September. I won’t pencil in a new date because right now there isn’t one. The fact that I’m still tolerating chemo well after 10 months and that it hasn’t significantly affected my quality of life means that I will continue to swallow this targeted therapy indefinitely. I’ll also still have bimonthly visits to Duke for an MRI followed by a clinic visit with my neuro-oncologist. If there’s ever anything significant to report, you’ll know. But for now, know that I’m doing well and looking forward to a nice holiday season with my family.

Best wishes to you and your family.
Love,
Sareana

Trail Ridge Road, RMNP August 2016

Late Summer Update

A long, hard year has come and gone since brain cancer returned last June. I’ve experienced plenty of good in that time period, along with plenty of challenges (just rereading my blog from 8/10/15 is a reminder of how far I’ve come). And yet, despite all the time that has passed, I’m still in the treatment phase. I’ve taken a daily chemo pill for 190 days and counting. It feels a little bit like the ritual of taking a daily vitamin, only this isn’t a Flintstone, this “vitamin” targets any possible cancer cells lurking about in my brain. In early February, my neuro oncologist laid out a plan for me to take eight 28-day cycles of this targeted chemotherapy pill. However, during my most recent visit to Duke in July (after learning the good news that MRI and PET scans were clean!), my doctor asked me, “How’s your quality of life?” I knew what that question implied: Do you think you could handle more cycles? Apparently, there was agreement across the clinic staff that not only are my MRIs, blood draws, and neurological test results evidence that I’m tolerating chemo well, but my physical appearance is encouraging. In other words, according to the numbers and how healthy I look, my doctor wanted to know how I felt about continuing on past the eight cycles he prescribed initially.

While all of the positive test results and my healthy physical appearance are good news, I can’t help but want and need a chemotherapy grand finale. This would be a date I can stick on the calendar, a date to look forward to—an end goal. Some of the more obvious reasons that this date is important to me is so that I can finally cleanse my body of toxins, regain my strength/endurance, and begin to grow back my hair. One not so obvious reason I’d like to see an end date to chemo sooner rather than later is so that I can begin the least scientific (and yet hardest) part of my cancer journey: processing everything I’ve been through. But despite all of these reasons I’d like to be rid of taking a daily chemo pill, I am committed to soldiering on and on and on. As Erin said to me about a possible extended chemo plan, “If four more months could mean forty more years, then by all means you’ll do it.” Of course we don’t have that kind of guarantee, but I am totally on board. Now is the time to hit any possible trace of cancer hard. If there’s one thing I’ve learned about myself over the last 40 years, it’s that I’m a strong and resilient person.

Happy 40th Bdays--Sareana and dear friend, Mary in Durham

One source of strength and resilience comes from inspiring stories of survival (not necessarily cancer related) who have overcome hardship or from those whose perspective on life has truly had an impact on my way of thinking. Interestingly, a recent thought-provoking comment came from a UPS delivery guy. I saw the brown truck outside, so when the doorbell rang, I raced to answer it. I flew the door open and greeted him with a friendly hello. He smiled back and asked me for a signature. While I was signing he asked if I had cancer. It wasn’t until that moment that I realized I had answered the door bald. For the record, I have never been offended by someone asking me that question, though it rarely happens because I’m typically wearing a wig and a hat in public. So, when the UPS guy asked if I had cancer, I admit I was surprised, but at the same time, I didn’t feel vulnerable or self-conscious. After all, I was at home where I feel most comfortable with my baldness. He could tell I was at ease and he began to share a story of a friend who had had cancer. His friend told him that after being diagnosed with cancer that his perspective on time had changed. He said, “Time is now much wider than it is long.” I thought about this concept of measuring time not by length, but by width, and it really resonated with me. In other words, I won’t complain about how long I have to take this chemo pill, rather I think about how today is a good day to be alive. It’s a perspective of someone whose mortality has been challenged by a serious illness. Another related deep thought is that a long life is something to hope for, but a wide one…to me that sounds even better (picture my arms outstretched in victory!).

There are so many people in this world that have been touched by cancer (as a reader of my blog, you are one of them) and sharing my story or another survivor’s story with someone can create inspiration for others. And so, my dear friends and family, thank you for sharing this journey with me and sharing my journey with others. With that thought in mind, I plan on setting my own end date for this blog next month in which I will update you with my MRI results and my end date for chemo. I have truly enjoying sharing my story over the past year. I hope it has meant as much to you as it has to me.

Love,

Sareana

P.S. This may be a fact already known to some of you, but I wanted to be clear that I am currently cancer free and have been since my operation last summer. I am careful to use that term “cancer free,” because I know that I stand on the precipice of bad news each time I have an MRI. However, thanks to two amazing neurosurgeons, both of my craniotomies in 2008 and 2015 respectively, removed the entire tumor. This is known as a total resection and is a very good thing in the world of cancer. Therefore, in my case, radiation and chemotherapy are used as tools to keep cancer from returning. After treatment is over, MRIs and PET scans are the primary tool that doctors use to detect if there is a sign of tumor regrowth. As one radiation oncologist told me last summer, “With this recurrence, you have signed up for a lifetime of MRIs.” 

A few pics from a fun-filled busy summer:

Summer is Here!

The past month or so has been action-packed. From a phenomenal two-week vacation in Hawaii, to fun-filled, end of the school year events in May, and the beginning of summer activities, we have been on the go! Our Hawaiian vacation was made possible by both sets of grandparents--it was actually their idea! They each took a week in Fort Collins to take care of the boys while we were gone. With the year that Erin and I have had, total rest and relaxation offered by the Big Island was dreamy. We enjoyed picture perfect sunsets, took daily naps, drank one or two Mai Tais, visited good friends in Hilo, and got plenty of Vitamin D and exercise. It was fabulous!!!

As soon as we returned from Hawaii, the reality our busy lives quickly set in. Alex turned 8 years-old, I took a whirlwind trip to Durham accompanied by my mom, all boys have been biking up a storm, we went on a Cub Scout camping trip, and Erin (as usual) has been working hard and flying aerobatics a time or two.

I am happy to report that my trip to Durham went well. My MRI was clean, which of course is always the hope. For better or worse, my mom got to experience first-hand the stress involved with having an MRI then waiting for the results. The moments that pass before the doctor comes into the room can seem like an eternity. When I’m in there, I’m just a few breaths away from hearing words that will offer a feeling of relief or a feeling of devastation. During my next visit in July, I will have an MRI in addition to a PET scan. The PET will monitor even more closely whether there is any sign of regrowth. 

Day-to-day chemotherapy in the form of a pill continues to go well. I look forward to being done with treatment in September. Over time, I’ve noticed I’m more fatigued and other quirky (yet common) symptoms have presented themselves such as tingling in my toes. It’s similar to the feeling of having your foot fall asleep, only mine never wakes up. I find myself complaining more often internally about not having any hair. This time of year, it would be nice to pull my hair back into a pony tail or just plain not have to wear a hat all the time. I’ve been bald since last October, and I just simply miss my hair. Oh well…turns out complaining doesn’t get me anywhere. Hair is just hair and Felicia (my wig) is doing a fine job. So, instead I’ll focus on what I do have, which is a fabulous summer to look forward to with my awesome family. Really-what more could I ask for?

Love,

Sareana