Cancer journey in letters
Letter 1
Dear friends,
We weathered hurricane Sandy better than expected. Lost electricity for a little while and part of our rain gutter crashed to the deck, but apart from that we’re all intact, Alhamdulillah. Arif drove me to radiation yesterday afternoon in high winds and torrential rains, only to find out, after an hour of waiting, that the radiation machine had broken down – and the person who could fix it was stranded in Baltimore. Three days, possibly four, without radiation is worrying. But more worrying is to see those babies from NYU’s NICU unit being transported from their safe haven that lost its power. May God keep them safe and protect all those who are suffering the storm’s wrath.
Some of you have asked me to write about my current journey. Perhaps this is a good day to start. As the heavens unleashed, perhaps I can unburden as well.
As some of you know, I was diagnosed with breast cancer last month, very unexpectedly. A routine mammogram in May led to a more in-depth one and then to a stereotactic biopsy. I was certain that nothing would turn up, but went through the motions to satisfy the process. I don’t fit the profile after all – no family history, healthy diet, moderate exercise, nursed both my children, never touched a drink or a cigarette.
The call from the doctor at Washington Radiology during the first days of Ramadan went like this: “I have some good news and some bad news.” Not too comforting a start. “It’s not malignant. But it is atypical.” Ok then.The initial diagnosis was Atypical Ductal Hyperplasia (ADH), a process by which normal cells start misbehaving. They stack up on each other and take on an abnormal appearance. Better to remove them before they get more of an attitude. Left untreated, they can become cancerous and eventually invasive.
The lumpectomy was scheduled for August 29th. In 90 percent of the cases, the surgery confirms ADH, my breast surgeon told me when we met a week later. Nothing more needs to be done, except for diligent annual mammograms. In 10 percent of cases however, it reveals cancer. I’m usually much luckier.
The last several weeks have been filled with finding my team of oncologists, researching, meeting doctors, getting second opinions, and talking to people who have been there. It’s been overwhelming. But purposeful. This is the next challenge in a year full of challenges. We each have our own, mine happens to start with a ‘C’.
Ductal Carcinoma In Situ, or DCIS, to be precise. It’s very early stage breast cancer, the best type to have if one has to have it. It’s contained, not invasive; the lumpectomy shows clear margins; radiation is the next treatment, and I have the option of taking a drug that can help prevent recurrence. I am, indeed, as lucky as I thought.
Today was the eighth day of radiation. Twenty-five to go. Some days friends accompany me, which makes it so much more bearable. But the shock still persists. Like on the first day of treatment, when I asked about a parking card and the receptionist said, “don’t worry, just tell them you’re a cancer patient.” What??It feels surreal – attending breast cancer survivor seminars on Saturday mornings; parking in the spot for “Radiation Oncology”; wearing my double layered blue gowns waiting with others similarly attired in the waiting room; trying to keep my legs from shaking with each creak of the door anticipating my turn. How in the world did I get here?
But as I lie on the radiation table each day, face down, arms raised clutching handles, two women manipulating me so that laser beams align perfectly across the five tattoos on my back – it feels all too real. I try and focus on the picture of yellow tulips on the wall in front of me, as the sound of Brazilian jazz tries to placate a stark and ominous setting.
Getting into position takes longer than the actual treatment. My cancer was one centimeter from my heart – position and precision is paramount. I try to hold my breath, but my heart races, my breath quickens. The first few times -- after all the measurements were taken and I was in perfect position -- I felt like bolting.
I had to force my body to stay, not move, clutch those black handles a little tighter. I say Surah Fatihah as the radiation starts – a beeping sound indicating the beams are penetrating. It lasts a couple of minutes. Then the mammoth machine rotates 180 degrees to the right, like a UFO hovering just above your nose. It blocks my tulips. I try to close my eyes, but they remain wide open; too scared to shut. Stay. Breath. Beeeeep. I felt something the first couple of times -- a slight electric shock, a zinging sensation. I don’t feel it any more. Perhaps I’ve gotten used to it; perhaps I’m not as acutely focused on feeling it.I’ll be back there tomorrow. Every day for the next six weeks. Wednesdays I meet with my Radiation Oncologist to check in. So far so good, I think. Thanks to the unbelievable love, support, prayers and blessings. We’ll get through this, Insha’Allah.
Love,
Salma
PS: Please don’t feel you have to respond to this letter. I just wanted to let you know what’s going on. But do say a prayer. It helps to write. I’ll write again soon.
Letter 2
Dear friends,
Hope everyone had a wonderful Thanksgiving. Ours was beautiful -- a profusion of family and food and blessings. I was nervous to host; some suggested I take a break, given my growing fatigue. But, this is what sustains me more than anything else – laughter emanating from a basement full of babbas, a kitchen abuzz with activity allaying any notion that there can ever be too many cooks, special prayers for my health from my father-in-law around a table brimming with 28, carom competitions and stories of Calcutta from the elders, and a post-meal stupor satiated with a good Indian movie, popcorn and blankets included.
During this weekend of gratitude, I wanted to add mine, and provide an update.
I’m more than half way through my radiation treatment. Alhamdulillah it’s progressing as it should. My radiation oncologist warned me that I would start feeling tired a couple of weeks into treatment from the ‘intentional, temporary damage’ being inflicted. The body can withstand the impact of radiation for about 12 days before it starts complaining. On cue, day 13, I started feeling exhausted. It’s especially acute right after treatments. I can hardly keep my eyes open in the late afternoons, and I’m in bed most evenings by 9 pm. The affected area is also very painful and sensitive, which makes it harder to rest or stay asleep at night. I keep reminding myself, this too shall pass, insha’Allah.
The most important thing for the healing process right now is exercise, rest, hydration and nutrition. I’m trying to cultivate my A game on these fronts. For exercise, my staples have been weekly yoga and walks. I’ve added strength training and special stretches to my routine. In terms of nutrition, I’m a bit overwhelmed and confused at the moment. I thought I had a pretty good diet, with the exception of my cupcake cravings. But I’ve been reading about Gerson therapy and the Hippocrates health program and Kris Carr’s crazy sexy cancer movement, the benefits of raw eating, the importance of juicing, and the consequences of sugar. There’s a lot to digest (!), and I need to figure out what will work for me in the long run.
I do start my day now with a green juice -- any combination of kale, cucumber, celery, beets, oranges, apples, mint, lemon, and ginger. It’s delicious. Really. Last week, I took Arif on a date to the only raw food restaurant in DC. He grumbled the whole way there, and raved the whole way home. Who knew kale chips could be so addictive?! But the key in all this is discipline and sustainability. I need to make sure my A game doesn’t slink to a C when no one’s paying attention.The most amazing part of this whole experience has been the overwhelming love and support and well wishes from family and friends, near and far. Thank you sincerely for your calls, emails, cards, prayers, visits, meals, hugs, rides, gifts, pep talks, books, soups, massages, walks, and on and on. I’ve been completely floored.
There’s no way cancer stands a chance to this kind of love.
We’ll get through this, insha’Allah.
Love,
Salma
Letter 3
Dear Friends,
It’s hard to think of anything meaningful to say, as our hearts still ache with unrelenting grief about the Connecticut school shooting. I stopped watching the news last night, but the sadness pervades. Tonight, the front image on the New York Times home page is a black box with the names and ages of the victims written in white. Six, seven, six, seven… Inna Lillah wa Inna Ilayhi Raji’oon. (Truly we are from God and to God we will all return.) May God protect all our children, everywhere, and ease the pain of those who are grieving, everywhere.
It feels inappropriate to write a letter about my own health, when others are suffering unimaginable anguish. But as you’ve been by my side on this journey, I wanted to write one more note to let you know that I completed my radiation last week. Alhamdulillah. Day 33 was in many ways like all the others. The 2:15pm appointment, the blue gown, the familiar faces in the waiting room. But on this last day, after that last beep, the technicians and I were able to laugh. They reminded me of my first day – how I refused to enter the room, frozen by fear at the sight of the mammoth machine; how tightly I held those black handles, they had to pry open my fingers. This last time, I was able to close my eyes. This too has passed. There is one more step to the process. A decision. Whether or not to take a drug called Tamoxifen for the next five years. It halves the chances of recurrence. Great. But it has some serious side effects. Not so great. And the idea of taking a drug for five years – a new study suggesting 10 years – seems disconcerting. I can’t seem to decide, and given my early detection I do have a choice. I’m taking a break for a couple of weeks, resting, recouping, recharging and then, Insha’Allah, deciding.
While I’d like to think that this is the end of the process, it really is just the beginning of the journey. To a more healthy, less stressful, more joyous, less worry-filled, more giving, less self-absorbed life. Insha’Allah.
Throughout this year, so many of you have reminded me that God does not give us more than we can endure; that in hardship, there is ease. This year’s struggles started with my father’s stroke; then my mom’s knee replacement surgery; then my girl’s very difficult time. I thought I would never smile again. Alhamdulillah, they’re all doing so much better. God does not give us more than we can bear. Yes. I’ve also been really impressed with His pacing. One hardship, then ease. The next, then relief . The next, then comfort. Allowing me to focus on this current challenge with some measure of fortitude and forbearance.I knew I couldn’t get through this time without my tribe. So I reached out to all of you. Family and friends, some with whom I had lost touch but who I care about deeply. It feels good to deepen our bonds of friendship, to reconnect and realize you were always there.
The other day a friend of mine who I hadn’t seen in a while came over. I filled her in about my treatment, what the doctors are advising, how my family is coping. She listened sincerely, then she looked at me and asked, “But, really, how are you doing?” That’s when the tears started.
A friend and editor of a magazine asked if she could publish these letters on her magazine’s website. I wasn’t so sure at first, it’s been a personal journey that I’ve shared with a few. But if these letters can provide some comfort or hope to someone else, help start a conversation about an issue we don’t openly talk about in our own community, or encourage us to ask each other, “But really, how are you doing?”, perhaps that would be the best thing to come out of this experience.
When she asked what I’d like to title the series, I thought the five words with which I ended each letter best sum it up. After all, it’s not about me, it’s not about cancer. It’s about life’s vicissitudes, which we all face, and about getting through them with grace, with community, with faith. And tonight, as I hug my children a little tighter, I will put in those five words as much love, prayers and strength as I can for those who are suffering so much.We’ll get through this, Insha’Allah.
Love,
Salma
