I think it’s time for another round of FAQ’s, don’t you? Here we go!
Your hair looks so good! Are you going to keep it short?
If I had a dollar for every person who has told me I should keep my hair this short… well, I wouldn’t be rich, but I could at least buy a nice sweater or something. I appreciate the compliments and everyone’s fascination with my hair growth process. However, I have no intention of keeping my current boy-cut. Having your hair fall out is totally traumatic. Having your hair grow back is totally awesome. I want it to keep growing. I have frequent dreams where my hair is suddenly long again. I look at old photos constantly and lament the loss of my long hair. So although this short “style” (if you can call it a style) is extremely low-maintenance, and perhaps one day I’ll go back to it… it’s still not me. It’s not my choice. And it still reminds me of cancer.
So everything’s good now, right? You feel good?
I never know how to answer this one. Yes, I feel pretty good, in comparison to how I felt when I couldn’t walk up a flight of stairs or raise my arms or sit up without assistance. It’s hard to complain about anything when I know what it really is to not feel well. But if you want to know the truth, I’m not just “fine” and “all better.” I still suffer from fatigue all the time. I often hit a wall in the late afternoon where I feel like I need to lie down and nap. I try not to plan more than one “exhausting activity” (such as grocery shopping) per day, because sometimes I can’t keep up. I have side effects from my drugs. Sporadic bone or joint pain. Headaches. Pelvic pain. Hot flashes. The constant drip of my nose. Tightness around my implant where I received radiation. Lots of little reminders, scattered here and there. So yes, I’m feeling pretty great, and thankful every day for my health. But it’s not perfect. And it probably won’t be for a long time.
You’re all done with treatment now, right?
Oh my gosh, you guys! Don’t you read this blog? I am totally NOT done with treatment. Every three weeks, I continue to check-in at chemo daycare and wait around 1-2 hours to begin my treatment. My port is then accessed with a needle and hooked up to an IV. It’s injected with saline, which leaves a gross taste in my mouth. Then I receive my medication for the next two hours. Then I go home and feel tired. I have been doing this for a year. And I am ALMOST done. In fact, Jan 31st should be my last trip into Chemoland, if you want to mark it in your calendars. That phase will be over, but I will still be taking my Tamoxifen each and every night and dealing with its thrilling and varied side effects (see above) for a looooong time. But it’s all a small price to pay for the chance to live, in my opinion.
Did you ever end up catching that mouse in your house?
No! The little guy is super sneaky and exceedingly intelligent. We have had a few sightings and have set up a variety of traps. Somehow, he is not falling for any of it. He knows what’s up. So for the time being, he is living with us. Really, he’s an ideal houseguest, as he mostly keeps to himself and stays out of sight and doesn’t ask for anything. But unfortunately, unlike with our other houseguests, our goal is still to murder him. Sorry, mouse. It’s a cruel world out there. As I have learned time and time again, sometimes life just ain’t fair.
From Steph: “This was a beautiful post and I am honoured to be mentioned in it. It also led me to discover the story of amazing Superman Sam and his battle with leukemia. At only eight years old, Sam passed away last week, leaving his family to mourn for their terrible loss. I have been reading their blog and am in awe of the way they express themselves during such a dark time. This entry in particular absolutely broke my heart: http://supermansamuel.blogspot.ca/2013/12/what-im-missing.html
Cancer affects us all, young and old. It is ruthless. Every time I think I couldn’t possibly hate cancer anymore, I then read a story such as Sam’s, and I am filled with anger at this disease and its ability to take an amazing 8 year-old boy from his family and from this world. Please read, and donate if you feel inclined. And hope for a future where we don’t have to share stories like this anymore.”
This is one of the scariest sermons I’ve ever written.
It also might be the one I was most excited to give.
A few weeks ago, when Nelson Mandela died, it seemed a no-brainer that my sermon tonight, for “Just Shabbat” would be about him.
But then Superman Sam died, and everything changed.
There will be a time to talk about Mandela – anniversaries of his death and of his deeds. I promise that I will give that sermon one day. But sometimes the important things that people have done in the past have to take a backseat to the important things people are doing right now. And right now, 72 of my colleagues and I are raising money to fight childhood cancer.
If we reach our fundraising goals, we will shave our heads.
A couple days ago, I attended the funeral of my great-aunt, the eldest member of my family tree. She was an amazing woman who lived a full and long life. As the rabbi and members of her family spoke about her, I began to think of the legacy she left behind and I realized that a good way to assess if you’re living the life you want to is to imagine what someone would say about you in your eulogy. What will they remember about you? What are the highlights they will touch upon? Is your career noteworthy enough to mention as one of your great accomplishments? Your charitable acts? Your kindness? The family you have created? What will you leave behind?
I’ve thought a lot about my own funeral. I imagine this might be somewhat normal, when you’re faced with a life-threatening disease. But maybe not. I think I’ve always thought a bit more about death and such things than the average person. Six Feet Under is my favourite TV show, after all, and I don’t think that is exactly a coincidence. I’ve wondered what would be said about me at my funeral. The stories everyone would tell. I imagine who would show up – perhaps people from my past whom I haven’t spoken to in years. I like to imagine that it could be a happy celebration of life, but I know it would not be so. When someone young dies, it’s seen as a tragic event. We think of the person they could have become and the many things they wanted to accomplish.
As much as I try to live in the present and not think about the many what ifs, I sometimes find myself consumed by the knowledge that I might not survive this brutal disease. The next few years for me are critical. And there are many people who have a recurrence many years down the road… 6 years, 8 years, 10 years. You get comfortable, and then BAM, you are told it is back, this time somewhere else in your body, and the situation is bleak. I hate that this is a possibility. I hate that because of my age and the genetic make-up of my tumour, my risk is higher. I am aware that the odds are in my favour, with all the treatment I have done. But the chances of an unhappy ending are still much greater than I am comfortable with.
One of the hardest parts of thinking about all this heavy stuff is imagining the people I would leave behind. I can sometimes come to grips with the idea of me, myself, not existing anymore. But when I think of the pain this would leave, with my husband and with my family… well, let’s just say I try my best not to let my mind go there. I guess I should feel grateful that I’m loved and that there are many people who would like me to be alive. Most would say that’s a good thing. But the idea that I could destroy the happiness of so many people is a lot to bear.
When my mind spirals down these dark places, I try to snap myself out of it: I say to myself, Don’t worry about tomorrow. I’m still here. Everything is okay today. Today, I’m alive. And then I move on and go on with my day and try to live a normal existence, the best I can.
Tomorrow is my 19th treatment. 54 weeks of having drugs pumped through my veins. That’s a long time. But I’m hopeful that the drugs are doing their job and that my story will have a happy ending. Today, that’s what I feel like believing.
Last night, I was invited to check out the super high-tech, one-of-a-kind guided therapeutics operating room (GTx OR) at the Toronto General Hospital. The operating room is equipped with really fancy, expensive imaging equipment which will be used during cancer surgeries, allowing surgeons to be much more precise when looking at and removing tumours. Pretty cool, right? It actually made me a bit jealous, like my surgeries weren’t sci-fi enough. However, this snazzy operating room is currently only being used for research purposes, i.e. very unique cases. And I’d prefer not to be a very unique case, so I don’t hope to be in there any time soon. Except to play with all the crazy machines, which from my understanding, is not allowed. Too bad.
The presentation about the room was a bit of a challenge for me, as the surgeon who was presenting spoke of aggressive tumours and the fast growing ones being more likely to “come back with a vengeance” and “those are the ones they worry about.” Even though I’m very aware of my cancer and what it could mean, I still don’t like hearing cancer spoken about in these terms. Other people are able to discuss it and ask questions, purely for interest’s sake, remaining safely detached. But I don’t have that luxury. Every discussion of cancer and prognosis and dying feels personal to me. I can’t escape the feeling of, that could be me he’s talking about. Someone again said something about me being brave last night, to which I replied, I am not brave, this is just my life. I have no choice but to wake up every day, and live this life. C’est la vie.
Next week, I’m getting yet another MRI. This time around, we’re going hunting for tumours in the brain. You see, I have been having headaches for awhile now. My oncologist was not overly concerned, but when I mentioned them to my family doctor and how they have been persistent, she wanted to do the MRI because of “my history.” In other words, because I have cancer. And once you have cancer, everything else could be cancer. That’s just the way it goes. So I’ll do the test, and I’ll try to meditate and breathe deeply and not think about dying while I await the results. Same old story, different organ.
I also have a UTI (urinary tract infection for the layperson). I felt the symptoms come on very suddenly last week. Even though it is incredibly minor and tolerable, I still got a little weepy and angry over it. I mean, can I not get one week off without my body malfunctioning in some way? Without having to order another test, or fill another prescription? I am so ready for a break from thinking about my health, my body, doctors, hospitals, medicine. I am trying so hard to return to normal life (whatever that is) but it seems something always pops up, holding me back, keeping me firmly planted in this state of unrest.
Tonight is the last night of Chanukah. One of my favourite holidays. Presents. Fried food. Family. Chocolate. All of the key ingredients. Oh and of course, most importantly, Chanukah is about miracles. A big miracle. And oh boy, do I love a good miracle. More miracles, less cancer.