Thursday, July 28, 2011
Tuesday, July 26, 2011
Today especially, I celebrate the life of my sweet and sassy Gramma. She'll forever live on in my heart, and I fight my battle in honor of hers - my most special fellow cancer warrior.
Gramma (Connie) Brothwell
February 9, 1936 - July 21, 2011
Our Gramma was a spitfire. She loved to zing us, affectionately tease us, and would laugh and laugh at the jokes she’d crack and good-humored tricks she’d pull. This, in turn, was always guaranteed to bring a smile to the faces of all who witnessed her endearing antics. She was witty, confident, sarcastic, and unpredictable in incredibly charming ways. Her affection for her family – both our very small immediate one and her large extended one – was deep and honest and unwavering. That was proven in how delighted it made her to be the first to call each of our family members and sing the “Happy Birthday” song to us on our special day every year – without fail.
The three – now five – of us grandchildren had an open and chummy relationship with our Gramma. We could talk to her about anything and she would give it back to us like it was. We never had to sugar coat things or act stiffly polite. Our relationship was warm, easy, and comfortable. We could be real and raw. She loved us all for who we are and embraced the differences in us.
Gramma loved to keep in touch with everyone. She’d leave long voicemails, sometimes getting cut off by the machine and she would say: “I love you very much” at least three times in each. We each have stacks and stacks of cards, letters and postcards that Gramma would mail us while we were away at college, often including a $20 bill to “do something fun with” or a crisp $2 bill for good luck. The word “From” on the preprinted Christmas gift tags never expressed it right for her so she’d always write “Love” right after it. We came to open each gift from her by reading out loud: “From, Love Gramma.” Same went for the passages in Hallmark cards. She’d underline the words she wanted to emphasize, sometimes with two or three thick lines to show how much she meant them.
Her notes were penned as if she was having a conversation with us: “How are you doing? Good? Good. Glad to hear it.” She wanted to know everything about what we were doing and couldn’t wait to fill us in on her latest escapades. She loved to talk on the phone and could do it for hours catching up with anyone who was up for a chat. She’d doodle while doing so and I’d always marvel at the little white notebooks with pages full of absent-minded etchings that littered her kitchen table.
Not only did she love to chat and visit with family, but with perfect strangers, too. My mom would always come back with some kind of story from the cancer treatment center about how Gramma had the whole room of cancer patients chatting it up and laughing. The nurses and doctors who cared for her always got a kick out of her openness and eagerness to tell and listen to stories. Anytime we were out to eat at a restaurant together she’d flirt with and chat up the servers. Anyone who had the pleasure of being around her became a quick friend. Even dogs loved her – all would nuzzle right up to her and lick her hands furiously in affection.
You couldn’t be around my Gramma and not feel an immediate attraction to her and her incredible people skills. We’ve all been on trips to the casino with her – one of her favorite pastimes – and you could guarantee that if we wandered away from her for a bit we’d come back to find her raising her fists in the air in celebration with three of four fellow seniors. They’d be high fiving each other or leaning their heads in together to chat while the digital wheels of cherries and bars spun.
Gramma was there for every milestone in our lives as well as the every day occurrences. We were so fortunate to have a Gramma just up the street from us to grow up with. A day at Gramma’s full of games of Chutes and Ladders and Trouble was always something we looked forward to. She was there for all of our dance recitals, all of our sport games, each of our high school and college graduations. There she’d be with flowers to congratulate us along with a visible swell of pride. It was very apparent that she loved us grandchildren tremendously by the way she kept such close track of us, squeezed us extra hard with each hug, and always left a lipstick imprint on our cheeks with the kisses she’d shower us in.
She loved lipstick and girly things. It was important to her to take tremendous care of herself. She always did her hair, her makeup, wore her perfume, matched her outfits to her purses and shoes and loved jewelry. She was beautiful. She taught my sister and I how to powder and lotion and would love to take us shopping and have us model clothes for her. She cherished her gold jewelry purchased on her travels to the Caribbean. As kids we’d tell her not to wear it swimming in the ocean because she’d attract sharks, but she wouldn’t be caught without them.
We all vacationed together in Cape Cod and New Jersey every year, she even took the entire family on trips to the Bahamas where we enjoyed shows, beach days, shopping and virgin daiquiris together. Grams loved wallowing on the beach. She didn’t like going deep enough in the water where she couldn’t touch, but she thoroughly enjoyed floating in the shallow waves on her blow-up raft or noodle until she’d wash up on shore with the tide, walk back out and do it all over again.
She was a woman who knew what she liked and didn’t like and went with it. She was comfortable in her skin, independent in her thinking, strong, and did what she wanted in life. She certainly wasn’t bashful. She loved to sing karaoke at my uncle’s for all to hear and couldn’t help but snap along to the music. Two Christmases ago she pulled up all the begrudging males in the family from their chairs for a chance to be her dance partner and swing around my parent’s kitchen with her.
She could play cards for hours against any opponent who was willing to take her on. Most recently Rummy 500 was her game of choice. While we were growing up it was Crazy 8s or Go Fish. At family events, it was Michigan Rummy. She was delighted when she beat her opponent – a highly competitive lady – and if by chance she lost, it meant more games until she could be victorious.
Now, we’ll all carry her in our hearts. Her easy laugh will echo in our memories every time we have a late morning breakfast at a diner, see a bluebird, a poodle, or the movie Pretty Woman showing late night on TNT. We’ll think of her every time we eat a tuna melt, spend a day at the beach, see a lady in Capri pants, go dancing, or catch a rerun of The Price is Right hosted by her “boyfriend” Bob Barker.
Her absence will be greatly felt by all who loved her, but we can take comfort in knowing that after a beautiful, full life capped with a tremendous display of strength at the end, she is now at peace, reunited with my grandfather and causing a ruckus up there with her siblings and best friends whom she so cherished. I can picture her bopping along through endless lines of chiming slot machines with infinite pocketfuls of shiny pennies to drop into them.
Cash out; Cash out, Gramma. We love you forever and always.
Wednesday, July 20, 2011
overhead, as the machine whirred around me and the table shifted me painfully slowly as images were taken of every millimeter of my body. For 20 minutes I laid there with my legs propped over a pillow pyramid and rolled towels on either side of my head so that it wouldn't move out of the carved pillow it was cradled in.
Monday, July 11, 2011
It is Day +25 and I am thrilled to report that I'm feeling strong enough to finally write – at least at this current moment. On July 5th I left the hospital after a 27-day stint. Craig and I moved into the American Cancer Society's Manhattan Hope Lodge, free housing (and so much more) provided to cancer patients. I've been here for six days and am so thoroughly impressed and in awe at the generosity of this place. I am comfortable here and love the fact that I can say I am now a New Yorker – I always did have a tinge of regret that I never lived in the city and now, here I am. Maybe it’s not the circumstances I expected, but I still get the opportunity to live in a 12th floor corner “studio” with huge windows facing the gorgeous architecture of the buildings surrounding us on 32nd Street, nestled between 6th and 7th, the fashion district, Chelsea, and Koreatown just blocks away.
Even though I’m here because I have cancer, I still get to have a rooftop terrace to sit out on with succulents and greenery and fashionable, comfortable patio furniture. When I look to the right I see the Empire State Building up close and personal. When I look across the street I can see the iconic sign for Macy’s Department store – the biggest retail store in the world and the center of Virginia’s Santa Claus revelation. When I look to the left I see a brick office building with the most intricate, lush climbing ivy that I’ve ever seen. It moves in the wind revealing ebbs and flows of light to deep, rich greens. Just past that there’s Madison Garden and Penn Station – the busiest train station in North America. There are parks and common areas and outdoor movie screens and a 3 floor 99 cent store ….. so much around.
I’d say I’m in a pretty cool place. Only problem is I’m supposed to avoid crowds, which is a wee bit difficult with x-million people crossing through the area per day. So far I’ve been watching them like little ants bustling around while I sit like a cat on a perch looking down from my room above. I love the unique beauty, the action, the bustle: it infuses life into me while I currently move at a snail pace. It’s a nice balance. I am allowed to be outside; I just need to wear a mask and gloves and not touch or rub up against anything or anyone – contact is the biggest enemy, but the chances of germs hopping through the open air are slim and my doc wants me to be out and walking little bits each day.
My start of physical recovery has been hit or miss by the hour, literally. Side effects fly in and out with no warning. But I would say that overall I am mountains better than I was last Tuesday when I was released. When I say mountains I mean I can be on my feet for more than 2 minutes. I mean I’m not constantly nauseous. I mean I’m not doubled over with abdomen pain. They are small accomplishments, but to me they are mountains. Slow and steady will win this race.
Craig has been there to catch me through it all and handed off the caregiving to my mom this weekend who also got to catch a bucket of puke, an unexpected full Saturday at the clinic, and a lot of snipping and swearing and crying on my part. Here’s a sampling of what I’ve been going through over the past five days: intestines aching with the newness of processing foods, severe migraines, swollen and achey joints, diarrhea and stools of shapes and colors and smells like nothing a human should produce, a few vomit sessions, several nausea swoons, a couple heaving emotional breakdowns, a regular patch of moss growing on my tongue, achey teeth bones, a very painful hematoma in my left chest/shoulder area – basically a big internal bruise and pooling of blood from when they put in/pulled out my catheter, the concerted effort to choke down 22 pills a day and a spoonful of gaggerificic white milky antifungal medication (Posacozanol) three times a day to wash it all down – a medicine that costs $1,000 per cough-medicine sized bottle and lasts a week (I’m grateful for the $75 co-pay), and of course tremendous fatigue from all of the above and the fact that my body is rebuilding itself from scratch and getting used to my sister’s blood sysyem being inside of it.
According to my mom, I said many things that Kristen would say this weekend and I blame her genes for the migraine-filled Saturday as severe headaches are something she is very prone to. I can also “blame” her for keeping me alive and giving me this literal second chance at life, so I guess that gets her off the hook, probably a free pass forever. Love you, sis.
But truly, each day gets better. I was in pretty rough shape, but I suddenly have some clarity again. Today I am wearing jeans (no, not even the pajama jeans currently being hawked on TV commercials) for the first time and I have not needed one cold pack or hot pack on any parts of my body. The clouds in my head have parted and though I still need a hardcore daily nap I was able to walk a few city blocks today.
I have been back to the transplant clinic at Sloan three times since my inpatient breakout. This will be the case for the next several months, which is why I need to stay here in the city. At clinic, my blood is drawn so that they can see what the levels of immunosuppressants are in my body. I take drugs called Tacrolimus and Sirolimus, which are the ones that control my/my sister’s growing immune system – the levels need to be constantly monitored and the amount of each drug changed as needed. The medical team also checks my blood count levels and all of my chemistries.
On Saturday (my very low day), I received a bag of red blood cells, a Magnesium boost and hydration, but otherwise all of my levels have been looking very good. This means that my sister’s stem cells are working to turn into what my body needs: my white cell level is good, platelets have stayed level and my reds are remaining in the anemic range but nothing worrisome, or new for that matter. Craig and I spent the morning in clinic today and all of my chemistries came back great; I was even taken off of my potassium supplements, a testament to finally being able to eat more and therefore getting my nutrients from actual food, and maybe more importantly, not shitting it all immediately back out. Many of the meds that I’m on can also deplete me of nutrients so supplements will be required for a while.
As expected I’ve dropped a lot of weight. I’m down to 112 pounds today (so about 16 pounds from my “average.”) That’s a bit scary to me, but doesn’t seem to be concerning to the transplant team. I’m really doing my best to amp up the eating and the weight will come back in time. According to People Magazine, I’m the same weight as Paris Hilton and skinnier than Kristen Cavelleri from The Hills – isn’t that something to strive for? I kid, and that actually makes me sick to read that being promoted. I look forward to building back some muscle and getting back my booty – all in due time. A lean svelte body is much better than skin on bones.
On the subject of looks, my hair is gone completely except for some little spikes in the front; it bothers me more this time around as it took so many months to grow back last time. I have all of my bottom eyelashes, but only a few top lashes on each eye. My eyebrows have thinned significantly, but are still there. I’ve lost all of my leg hair except for patches on each knee. I have a few new scarred holes in my chest from the catheters. My skin has more chemo burns and darkening. These are all very inconsequential and unimportant things, but I can say that it is more difficult being bald and eyelashless this time around. I don’t like looking in the mirror and seeing such an obvious patient staring back to me. I guess I really did get used to having my curly hair and being able to hide behind that a bit even though I was still receiving treatment. But again, insignificant I know. I am just tremendously grateful to have gotten this far.
I am clearer and can start to look back a little bit onto what I’ve been through. I’m still not quite able to look at pictures of me in the hospital and I’ve not been able to bring myself to read my last blog; I have no recollection of what it says, I only remember that I was crying through writing it all and quite tripped out on medication. I see now that apparently I got through by just putting my head down and ramming through like a freight train. I dealt with each issue as it came up, focused on that and pushed through it. There was not room to do much else. I don’t remember much at all; I don’t remember what I talked about with people nor any of the really bad stuff. I remember the good things, the unreal kindness of the medical staff, and the times that I felt a little bit well. It’s like I had blinders on through the difficult stuff; it comes back in little glimpses and I shudder at those memories but am also proud.
I know for certain that what really got me through was the stacks of mail – packages and cards and letters that brought so much joy, the texts and Facebook messages and e-mails from friends, family, co-workers, perfect strangers, fellow cancer warriors. Visits from truly special close friends – my childhood best friend traveling all the way from middle Connecticut, by herself just to spend the afternoon with me, my parents, my brother and sister. It didn’t matter that I wasn’t strong enough to respond to people nor coherent when they visited, the support just continuously pours in. Like I said, right now I don’t necessarily remember what they said, but I do remember it lifting my heart. Pictures of my life outside of that room, of my family, friends, beautiful places I’ve been and seen and conquered and Miss Sammy, Sammy, Sammy got me through.
I still cry when I think about the deep kindness displayed from the people in my life. I have a second cousin that sent me a “daily photo from the farm” every day with a picture and funny anecdote about her kids or their animals or the beauty of nature on their country home. I have a dear friend who sends me a “daily photo of the outside” from some of her favorite spots in Hoboken to city and nature scapes. My mom’s best friend sent me an encouraging text every, single morning without fail. At my request, every night, whomever was with me would tuck me in and read me poetry. Our friends who are watching Sammy would Skype us in with her and have created a Facebook photo album constantly updated with funny pictures of her and their dog. That’s just a glimpse at the love that I felt all around me lifting me up.
Even to write about it is making me cry at this moment. I am forever, ever changed by what this experience has revealed to me about the human spirit and what true connection means. And my husband and immediate family? Words can’t even begin to describe the support and love and encouragement I’ve gotten in that department. My husband is cut from an incredible mold; he is with me by my side, always.
Sigh. So that is where I am at right now. Tomorrow I look forward to a breath-focused yoga class being offered here at Hope Lodge. Tomorrow night a group of singing lawyers is coming to entertain us and later in the week I’m going to take advantage of a session with a Qi Gong healing touch volunteer. There is much more to be written about the oasis that is this place and the amazing people from around that globe that I’ve met here so far and who are right with me in their own cancer journeys.
Medically, I am back to clinic Thursday for a levels check. Next Monday I’ll get a PET Scan and Tuesday a bone marrow aspirate to see what’s going on inside. The look at my bone marrow will reveal how much of my sister’s immune system is within me. The PET Scan will give us an idea of what’s going on with the lymphoma – if there is anything at all.
I am one quarter of the way through the big “first 100 days” and so far I’ve made it through without any major complications and no signs of graf vs. host disease, though onset doesn’t usually happen until Day+60 or so. Though very tired, I am grateful, humbled, proud and in love with life no matter how very, very, very difficult it might be sometimes to function in it. I can still feel the breeze on my naked head and spoon with my husband on a warm summer’s night. That makes it worth anything and everything.