On the Threshold of Spring

“How are you feeling?”

I’ve come to hate that question. When I know it’s coming, I brace myself for it. I run through potential answers in my head, tossing some aside, tweaking others until I settle upon a response. Like a bald Goldilocks, it often takes a few tries these days until something feels just right.

“How are you feeling?”

However reclusive I may be lately, I still can’t avoid that question. It finds its way to me via email and voicemail, text and Facebook message. Even when the question isn’t posed to me directly, it’s lying there under the surface, expectant, waiting. It’s not that I don’t want people to know how I’m doing, feeling, performing, surviving. I’m an open person who often teeters on the edge of TMI. A natural health geek and certified health coach, I’ve chosen to share intimately about my healing journey. But how to simplify the enormity of this experience into a response well suited to answer that question? That’s what plagues me.

“How are you feeling?”

That question didn’t use to bother me so much. In my early stages of cancer treatment, I think the answer was simpler. In the month between diagnosis and chemotherapy, I self-treated the cancerous tumors I found in my breast. With the help of an array of natural healing modalities and supplements, I managed to create a fever in my chest. When the fever burned off, the tumors felt different—their energy had shifted, they felt less firm. Five days later I had 15 needles inserted into my breast and underarm during a biopsy procedure. The swelling from that procedure masked any tumor activity for nearly three weeks. On July 12th I started chemo as part of a clinical trial. On July 17th I noticed that the swelling from the biopsies had finally retreated, and I couldn’t feel the tumors anymore. My oncologist confirmed what I felt at my next appointment, but I would have to wait for statistical confirmation. That came on November 28, 2017 when my surgeon called to inform me that I had a “pathologic complete response” (PCR) to the pre-surgery treatments—no cancerous cells were left in the breast tissue or four lymph nodes removed from my body.

“How are you feeling?”

My attitude towards the last half of 2017 was “GFY cancer,” and “we shall overcome.” I dyed my hair platinum blonde, wore fun socks to chemo, participated fully in life. As part of a clinical trial, I joked that I was a poster child for the future of cancer care. The chemo drug I received was a targeted treatment, it went straight to the cancer cells and left the rest of my body mostly alone. Between July 12 and October 25 I received six infusions over 15 weeks. I hung onto my hair, managed my side effects with supplements, and had plenty of time between chemo sessions to schedule my complementary treatments (massage, acupuncture, naturopathic doctor, etc.). The more infusions I had, the more the exhaustion and neuropathy built, but with only a 6-treatment protocol, it was over before the side effects felt too overwhelming.

“How are you feeling?”

If you posed that question to me last year you likely found me full of confidence and light, empowered and inspired by the journey I was on. With all the great stuff going on, how could I help but have a positive response? Plus, it was summer and fall, and we New Englanders are always a bit more optimistic when the weather is nice. I was healing, Dylan was healing, our family had a short respite where we knew what was coming and we knew we could handle it. Looking back now I can see how much I savored those days.

We knew there would be more treatments after surgery. We knew that those treatments, a standard chemotherapy protocol, would be the most difficult on my body. Why keep treating if the cancer cells were gone? Simply put, this is my long-term insurance policy to not have the cancer come back. Every human who faces down cancer must also choose the tools we will use in our quest for healing. It’s an incredibly personal choice, and sometimes the weapons we choose to fight the cancer end up turning on us in the heat of battle. I’ve relied on my years of training as a health warrior to sustain me through the long months of treatment, and it has. But I’d be lying if I didn’t acknowledge the toll that these last few months have taken on me.

“How are you feeling?”

Today marks the eve of my last chemotherapy treatment. From this vantage point, I can see what a loaded question that is. “How are you feeling?” The short answer: I’m okay. The truthful answer: It’s incredibly complicated.

As often as I remember, I feel grateful for the fact that I’m still here. I’m winning the battle. My weapons of choice have not turned on me. Although uncomfortable and inconvenient, the side effects I’m experiencing are so far not threatening my long-term health in any way. Although expensive, this experience will not bankrupt us.

For 11 weeks straight I’ve reported to duty at the Milford Dana Farber, 30 minutes from home. I submit to blood draws, report on side effects, chat with my nurse. Since 1/2/18, Chemo Tuesdays have been my constant, the one thing I can count on…except when last week’s blizzard moved my treatment to Wednesday. New England problems.

According to my doctors and nurses and complementary therapists, I’m sailing through treatment. My body has handled the chemo drugs well, I don’t resemble the typical cancer patient. I have plenty of fuzz on my shaved head, my eyebrows and eyelashes are diminished but intact.

“How are you feeling?”

The challenge with cancer treatment is that it doesn’t exist in a bubble. I have a life, obligations, a bucket list. There are creatures in my care, humans and animals who require daily attention, whether I feel up to it or not. Acutely aware of the impact this illness and its treatment can have on my children, I do my best to shield them. I show up to school events, celebrate birthdays, vow to keep their lives as normal as possible. I do as much as I can, as well as I can, hoping that it’s enough, retreating when it feels like it’s too much. Despite my best efforts, I leave some disappointment in my wake. I pray that any damage is reversible. I try to remember that it won’t always be like this, soon this will feel like a distant memory. I often forget.

Life didn’t pause when I started these 12 weeks of chemo. These last 12 weeks have been some of the most difficult of my life, even without the chemo. I’ve mourned the loss of a father-in-law and watched my family grieve. I’ve watched my children struggle with health issues, some known to us, some still uncertain. I’ve made urgent calls to two different vets, for two different animals, learned that guinea pigs can get breast cancer too (more often when they’re inbred), and that elderly cats sometimes faint from getting up too quickly. Aiming to be proactive, I planned rest days and spa days and days to do my taxes, only to have them superseded by wind storms and snow days and days with no power. Over and over again I’ve been reminded of the fragility of life and the uncertainty of tomorrow. Painfully present to “this moment is all that I have,” yet spending my days waiting for time to pass, waiting for spring, waiting for tomorrow.

Tomorrow is here.

 

 

 

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3.19.18 On the Threshold of Spring

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Posted in cancer, chemo, Daily Life, Dana Farber Cancer Institute, Energy, Experiences, Family, gratitude, Healing, Health, Overcoming Challenges, Personal Growth, Retreat, Spring, Time, Wellness | Tagged , , , , , , , , , , | 3 Comments

Ode to Mon Cher Philippe 6/4/1951-2/5/2018

This tribute was written in the days immediately following the passing of my husband’s stepfather Phil, after a brave battle with cancer. Phil received his cancer diagnosis on the same day I started this current round of chemotherapy, 1/2/18. It was shared at his memorial service on 2/8/18. 

February 5, 2018: Today is a morning of loss. We are New Englanders, so there is the obvious loss of our team in the Super Bowl last night. Monday morning + Super Bowl loss = grouchy Massholes. But in the great physics project that is life, every loss over here triggers a celebration over there. The higher our upswings, the deeper our lows. All we can do is learn to ride the waves.

On Monday February 5, 2018, our family experienced a loss that hurts more deeply than being on the losing end of a football game. Philip J. Maggio passed peacefully at 4:11am, surrounded by his loving family. As we process and grieve and feel all the feels, we will also celebrate his life. From Punxsutawney Phil to the Philadelphia Eagles to mon cher Philippe—this was the weekend of Phil.

Born in 1951, Phil embodied the values of that decade. He was a true gentleman, in word and in deed. Phil loved his family and spent many peaceful weekends with us gathered at his home. Phil was never the rowdiest guy at the party—that would have been difficult with the company he kept (I’m looking at you, Jerry & Joe). You could find Phil drinking his black coffee, watching the activity around him, chatting with the ladies in the room, asking the guys if they were “behaving” (they weren’t).

Phil was a kind and gentle soul, content to watch history shows and play online slots while his wife Lorry played in her weekly golf and tennis leagues. On weekends filled with the energy of grandchildren, Papa found ways to share special time with all of them. Dylan and Papa liked to sit quietly and watch science shows together. Brayden loved reading with Papa when he was younger. Gianna, 4-year-old bundle of energy that she is, loved sitting with him, hugging him, and jumping on him. Always ready to laugh, Cooper was his tickle buddy. And Kenadee, just two at Phil’s passing, liked playing games with Papa.

Christmas was Phil’s favorite time of year; he loved decorating and having the family all together. Aiden will always remember the Christmas of 2017 since it was the last Christmas we had with Papa. Phil and Lorry took all the grandchildren to Santa’s Village at the end of last summer. Cooper loved riding the rides with Papa; he just adopted a reindeer in his Roblox game in honor of Papa’s favorite animal.

Another love of Philip’s was cruising. He and Lorry always had their next cruise booked. He was passionate about sharing a cruise with his family. In June of 2017 Phil and Lorry made that dream come true. He proudly gathered all 18 of his immediate family, part of a larger family group of 48, on the Norwegian Breakaway to Bermuda, and we got to see the world through his eyes for a week. Some of his grandchildren’s favorite memories with Phil have come from that cruise. Brayden loved doing the ropes course with Papa cheer- ing him on. Dylan, fresh from his own health diagnosis, found his freedom and footing again on the Breakaway. Phil informed me he ran into the “gang of four” (Aiden, Dylan, Brayden, Cooper) on an elevator, headed down to a floor they had no business being on. Despite the challenges we faced at the time (the cruise was planned for the week between my biopsy and diagnosis), we came together for a week of celebration, exploration, and connection. We set sail on Phil’s 66th birthday. We are so grateful for that time together.

As we prepare to honor and celebrate the life of Philip J. Maggio, we are constantly reminded of his kindness. Phil’s epitaph: “He was a good man.” Granddaughter Mikalyn remembers that Phil always went out of his way to talk to her when she visited. As someone who struggles with anxiety, she often stays to herself and shuts others out. Despite all that, Phil would come talk to her, offer her food, and make sure she was fine. Tristen, the eldest grandson, also remembers Phil’s kindness. He did his best to make sure that Tristen, a step-grandson, felt like part of the family. Tristen is sad that Kenadee, the youngest grandchild, may never fully realize what a great and kind person her Papa was. He took care of his family, he met his obligations, he did his job.

In February of 2018, Phil planned to retire. As we grapple with his loss, we also see the courage that Phil must have called upon to stay with us as long as he did. Phil had a quiet strength about him. We jokingly called him “Party Phil.” When he and Lorry moved up the family cruise to 2017 instead of 2018 (the original plan), I affectionately poked fun at his belief that he may not make it to 2018 by calling him “Eeyore.” On the outside we could see nothing wrong. But Phil knew that he was fighting something, and he was determined to stick around until his family was taken care of. In the last few years Phil saw both of his children married; his son Paul has found success at the company he was set to retire from. When his grandson Brayden faced leukemia in 2011, Papa was there to help Brayden heal. And when I faced my own cancer fears last June, Phil pulled me aside on the cruise ship and shared his strength with me. His message: if you believe you can heal, you can. You got that right, Party Phil.

Philip Maggio, stubborn and proud Italian man that he was, went out on his own terms. Looking back now, 2017 was a year of closure. Not wanting to leave his wife in debt, he waited to retire until he had fulfilled some last financial obligations. In November he buried his mother. In November and December we gathered for one last Thanksgiving and Christmas with Party Phil. His family laughed hysterically as he read aloud the explicit sayings from “Cards Against Humanity.” Rest in peace, mon cher Philippe. Your work here is complete.

Written with love and affection by his daughter-in-law, Danielle
http://www.daniellecleary.org

 

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Philip J. Maggio  |  1951-2018

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The Family Cruise To Bermuda | Norwegian Breakaway | June 4, 2017 (Phil’s 66th Birthday)

 

Posted in cancer, Family, gratitude, In Memoriam, Life Passages, Loss, Reflections | Tagged , , , , , , , , , , , , , , | Leave a comment

Disco Balls & Diana Ross:  A “Coming Out” Party

When we think of a cancer patient, the image of a bald head inevitably is part of that picture. For cancer patients ourselves, hair loss is a reality we must face. Even if we choose to embrace the hair loss as a sign of healing (it means the chemotherapy treatment is working), it still hangs over us as we journey towards healing. Will I lose my hair? When will it happen? How will I handle it when the time comes? What does my head look like under there? How will people react to me?

For the first six months of my cancer treatment, I felt like I was walking around with a big secret. I bet those kids dancing next to me at the Deer Tick show had no idea I was a cancer patient. It’s like the time my water quietly broke while I was perusing the pineapples at Whole Foods. It was kind of a big deal and I felt like I should tell somebody that my baby was on his way, but I didn’t want to freak out the produce guy. If my water had come gushing out, it would be a different story—everyone would know. If we quietly fight cancer and manage to keep our locks out of it, we can cruise through the world, hiding in plain sight.

And yet what does it mean to lose our hair? Why does that happen for some patients and not others? The chemotherapy drugs I received in the summer and fall were part of a clinical trial. They were testing the use of those drugs in the pre-surgery (neo-adjuvant for all you science minds) setting. It was a targeted therapy, going straight to the cancer cells in my body and (mostly) leaving the rest of my cells alone. I completed six infusions and didn’t experience any noticeable hair loss.

For more traditional chemotherapy drugs, they work by targeting rapidly dividing cells. Cancer cells divide rapidly; so do hair, nail, and those in the GI tract. My Naturopathic doctor (ND) told me that hair loss is a therapeutic response; it means that the chemotherapy drugs are working. I don’t go to Dana Farber every Tuesday for the free apple juice, I go there for the intravenous drugs. If losing my hair means that my time is well spent, then bring it on.

But then they tell you: not everybody loses their hair. Sometimes it just thins out. And different chemotherapy drugs impact hair differently. There are fancy new devices called “cold caps” available now—they can help preserve your hair. But they too come with a cost—they’re in limited supply, only at the Boston Dana Farber, cost money, require a longer infusion time, and you can’t cut, color, or otherwise agitate your hair for the months you’re in treatment. So much hullabaloo about the hair!

When I started my post-surgery infusions on January 2nd, I knew that hair loss was likely (although not everyone on this chemo protocol experiences it) and I was told to expect it by the 6th treatment if it were going to happen. Waiting to see if my hair will fall out is one more odd experience in a string of very odd experiences. It started to happen over the weekend between treatments three and four. One day I pulled out six hairs together—game on. The 4th treatment on Tuesday 1/23 accelerated the process, and I booked my wig and shave appointments for Friday 1/26, a week ago today.

In 2015 I cut 10 inches off my hair (donated to Pantene Beautiful Lengths) and rocked a pixie cut for the first time. I was in health coaching school, had given up alcohol for the year, and felt strongly compelled to try on a really short hairstyle. It took some getting used to, but I did, and I liked it. I started growing it back out in early 2017 and was just about to hit the awkward stages when I received my cancer diagnosis. Heal from cancer AND deal with awkward hairstyles? No thank you! Jessica (my hairstylist) trimmed it up again and encouraged me to go platinum. If I’m gonna lose my hair anyway, why not lose rock star hair? This time in my life can be described in many ways—“the year I went platinum” is one of them.

When I realized this hair was going faster than I expected, I didn’t mourn the loss of my hair in general. Hair loss = chemo works, I’m on board with that. Waiting for your hair to maybe fall out isn’t a great time and feeling like your hair is falling out while you’re in the middle of a conversation with someone is really bizarre. I wasted no time in booking those appointments. As Friday approached though, I felt a bit sad that my rock star hair didn’t have one last night on the town. I don’t plan to go platinum when my baby hair grows back in; I may never be platinum again. Lucky for me, my rock star hair hangs with a cool crowd, and we were invited to a show last Thursday night. My friends hooked me and my hair up with VIP tickets to the Foundation Room at the House of Blues to see Greensky Bluegrass. Boom! Don’t fight the Powers.

My dear friend Daphnee offered to meet me at the wig shoppe for support. Her son Benny was home from preschool, so he came too. Three is a party, so I brought party favors. Wine glasses and sparkling seltzer for the hair salon (juice boxes for Benny!), a theme song for my hair’s “coming out” party, and a rotating disco ball light bulb. It’s not every day a gal gets to shave her head and start over. It seemed a milestone more worthy of a celebration than a crying session.

As I drove down to Cranston (where the fancy ladies go!), I listened to the words of Diana Ross’s “I’m Coming Out” (my hair’s theme song, obvi) with fresh ears. Miss Ross was onto something. Forget just the shaving of the head party, this could be a theme song for the whole cancer party. Give it a listen this weekend if you have a moment.

“There’s a new me coming out
And I just had to live
And I just want to give
I’m completely positive
I think this time around
I am gonna do it
Like you never knew it
Oh, I’ll make it through”

 

 

 

 

 

Posted in cancer, chemo, Dana Farber Cancer Institute, Energy, Experiences, Friendships, gratitude, Healing, Health, Life Passages, Music, Overcoming Challenges, Personal Growth, Release, weird | Tagged , , , , , , , , , , , , , , , | 5 Comments

Gratitude

Things I am grateful for today:

Our health insurance.

The Dana Farber Cancer Institute doctors, staff, volunteers and donors.

That my illness is universally recognized to exist, and there’s a variety of treatment plans with proven success rates, and my insurance covers most of these treatment plans. This is not the case with many other illnesses, including PANDAS/PANS and chronic Lyme disease, two battles currently being waged by those near and dear to my heart.

My bathtub.

That plant that grows in the ground and has been around for as long as humans have, that happens to have many superpowers, one of which is to kill cancer cells. Pharmaceutical companies can’t synthesize the many fabulous benefits of this plant. Oh, and the federal government gets nervous around such awesomeness, so it made it illegal.  Yeah, that one.

My husband.

The smoothie delivery service we started using last week. Game.Changer. https://greenblender.com/r/DANIELLE214 (for $20 off an order)

My cat.

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Today I can feel it—all of it. I can feel the $70,000 or so worth of cancer-fighting drugs moving through my system (gratefully paid for by our insurance). I can feel the strain of standing firmly for the health and wellness of my family while also fighting for my own. I can feel the impact of the restless nights and steroid-fueled days. My hair follicles are itchy. My GI tract is upset. My body aches and shivers. Today I will surrender to the intensity of this week’s treatment. Today I will allow myself to rest and release. Today I will retreat to my cocoon. It is not yet time to become a butterfly.

Lady

Posted in Autoimmune illness, cancer, chemo, Dana Farber Cancer Institute, Energy, gratitude, Healing, Health, PANDAS, PANDAS illness, Personal Growth, Release, Retreat, Steroids | Tagged , , , , , , , , , , , | Leave a comment

Trench Vibe

winter winds whip on the front lines of all things
health + wealth + being + nothingness + that which lies within

mindfulness on steroids, escaping deeply
alert and ever watchful, losing sleep

focused when it’s called for: track, weigh, record
we watch and we wait, apply and observe
we are learning so much

we are a unit, team, organism
we are biotic: probiotic, symbiotic, antibiotic
our dance has a rhythm all its own

ebbing, flowing, stretching, growing, we crawl our way through each day
we exhaust ourselves
we rest, reconnect, regroup

our trench has headaches + heartaches + muscle aches aplenty
we fly under the radar yet demand all of your attention

we rejoice when life feels peaceful and balanced
we fight for those days with more laughter than tears
we feel pain deeply and not just our own

baptism

Our Sunday finest

Posted in cancer, chemo, Daily Life, Energy, Experiences, gratitude, Healing, magic, Motherhood, PANDAS, PANDAS illness, Parenting, Personal Growth, Poem, Release, Retreat, Steroids, Wellness | Tagged , , , , , , , , | 4 Comments

Steroids and Spa Days

It’s just after midnight and I am awake. Last night at 1:46am I ordered a “make your own smoothies with our pre-measured ingredients and recipes” delivery service, scheduled to start next week. That would be the steroids.

I didn’t have any steroids with my first 6 rounds of chemo, the ones before surgery. I was on a clinical trial for a targeted chemo drug, and it had less severe side effects that didn’t warrant preventative measures against allergic reactions. Because I chose to participate in the clinical trial I’m now doing the protocol I would have done before surgery.  Its initials are THP. The T stands for Taxol, the main chemotherapy drug. It’s made from the bark of the Pacific Yew Tree. A Dana Farber nurse who had been around for a while told me that years ago they would still find little pieces of bark in the medicine. I will receive Taxol by infusion every week for 12 weeks.

The H in THP stands for Herceptin. That’s not technically a chemotherapy drug, it’s called a “monoclonal antibody.” The cancer cells I had were HER2+ (a specific type of receptor on the surface of the cell), and this drug is really good at hunting down those cells and preventing them from growing. I will receive this antibody infusion every 3 weeks for a year.

Finally, the P in THP is for pertuzumab or Perjeta, depending on who you’re speaking to. Perjeta is the brand name. This was part of my pre-surgery chemo regimen, it’s another type of monoclonal antibody. This will drip into my veins every 3 weeks for the 12 weeks I get the Taxol—I think. It’s still early in the game, and I’m still learning all the rules.

New rule: while you’re busy looking out for chemo side effects, you may be in a ‘roid rage and not even realize it! Because you totally forgot that you took steroids on New Year’s Day in preparation for your January 2nd infusion!

There are many pieces of good news in this post, and they may not be obvious, so I will clarify:

  1. I start this phase of treatment knowing that I had a pathologic complete response prior to surgery—no cancer cells left where there used to be lots. Things look very different from this scenic viewpoint.
  2. My intention was to have a treatment plan that I could agree to. If I hadn’t done the clinical trial prior to surgery, I would have already done THP and wouldn’t be eligible for it post-surgery. The Dana Farber doctors would have recommended I do a chemotherapy protocol with the initials AC. Nickname: The Red Devil. From what I’ve read, it sounds like it knocks you down real hard while you’re in it. But the issue I would have in accepting this protocol is that the side effects follow you for life. I could drop dead in 10 years from heart failure, all because of that chemo I did back in 2018. As an oncologist friend of a friend described it: “It super sucks.”
  3. The THP protocol has side effects too, some serious (heart damage, severe muscle aches), some just annoying (nosebleeds, neuropathy). I’ll have echocardiograms periodically while in treatment, to make sure my heart is holding up okay (so far, so good). And when I’m done with treatment, the side effects end. They don’t follow me forever. Cheers to that.
  4. Because this is a standard protocol, I can do it at a Dana Farber satellite site, which is a HUGE deal when you’re going every week. I live 30 minutes from the Dana Farber in Milford, and that includes traffic. My community acupuncture place is also in Milford, and there’s a Whole Foods in the next town over. The facility itself is much smaller, parking is easy and free, and I can get reflexology treatments and hand massages while I’m in treatment. Um, it’s basically a spa. I will trade the 5 star cafeteria at the DFCI Boston campus for easy peasy lemon squeezy ALL DAY LONG.
  5. I can drive myself! I am so very grateful to all of the lovely people who took me on chemo and movie dates in Phase I. But those were every 3 weeks, and there were only 6 of them. This is every week for 12 weeks, during Jerry’s busiest season at work. I roll from treatment to Whole Foods to home, all within school hours. Bam!

Tuesdays are my treatment day. Which means Tuesday night and Wednesday are my super duper productive days because…steroids!! I’ve taken steroids before, when I had a horrifying reaction to poison ivy back in 2012. I was so distracted by my desire to peel the skin off 1/3 of my body that I must not have noticed the ‘roids as much. Or maybe because I was actually in a state of allergic reaction, the steroids were a welcome relief. If I’m not reacting to the Taxol, does that mean the steroids have nothing better to do than to make me feel totally whacked out at various points throughout the day? Don’t get me wrong, Danielle on steroids was super helpful last Wednesday as we prepared for a blizzard to arrive. Do steroids amplify our strongest traits, or our most intense neuroses? Let’s just say that my lists have lists and the three boys that I live with are on notice. Don’t cross mama in a ‘roid rage! Oh, and my brain won’t shut off. Which is why I’m here with you and not sound asleep like the rest of my household.

I went to a “Look Good, Feel Better” workshop today at my DFSpa. Myself and another lady got makeup tips, scarf tying lessons, and wig catalogs from a Hawaiian transplant named Toni (it’s her first winter here—yikes). Loads of companies donate products for us gals, everything from cleansing towelettes to nail polish to eyebrow pencils. Unfortunately most of those products contain cancer-causing chemicals (Hint: don’t give the ladies who lean towards cancer products that cause cancer), so I left them behind. Toni gave us some tips on selecting a wig, and she asked for a wig model. I’m not a big selfie girl, but this seemed to good an opportunity to pass up.

Note: these were not my wig choices, just the ones she uses to show people what to look out for.

Toni says that synthetic wigs are way easier to care for, less expensive, and tend to look more real. Who knew?!

This is a wig made of real hair by Pantene Beautiful Lengths. I donated 10 inches of hair twice to Pantene Beautiful Lengths. Apparently they make terrible wigs with really awkward parts (see photo above), which is a damn shame.

That’s our fearless leader Toni! And that is a tricky little fringe that you add to your hats so you don’t have to deal with a whole wig setup. Those crafty folk!

Posted in cancer, chemo, Dana Farber Cancer Institute, Experiences, gratitude, Healing, Health, hospital, Steroids, weird, Wellness | Tagged , , , , , , , , , , , , , , | 5 Comments

The Land of Possibility

Ahhh, 2017, the year when the seemingly impossible became possible (for so many of us, in so many ways). As this year comes to a close, and as I personally have some major hurdles now behind me, I find myself reflecting on some of the choices that I made. Why did I approach this problem that way? What compelled me to follow one path and not another? Given all of the information that I have now, would I do it the same way again?

On 11/17/17 I underwent a lumpectomy, or breast conservation surgery. It was an outpatient procedure, 6 hours total from our home to the hospital in Boston and back. The surgery was a success on many levels. In late June I tested positive in one lymph node (although, with the information we now have post-surgery, my surgeon believes I had cancer in two lymph nodes, known as a “local invasion”). Because I had tested positive prior to treatment, there was a possibility that I would receive an “axillary dissection” while under anesthesia; it all depends on how the lymph nodes test while surgery is being performed. In an axillary dissection, the surgeon removes all the lymph nodes in a triangular area under the armpit. Every body is different, and that could mean as little as six lymph nodes, or as many as 26 (the range they’ve seen in previous patients). As the lymphatic system is responsible for filtering waste from the body, keeping as many lymph nodes as possible was kind of a big deal for me. I awoke from surgery to learn that my lymph nodes had tested negative–hooray!  They removed four “sentinel nodes” (the ones responsible to drain the cancer), which is the current standard of care in breast cancer surgeries.

For 11 days post surgery, we waited. While we waited, I healed, my family carried all my heavy burdens, we gathered with friends and family on our national holiday intended to give thanks. On the evening of 11/28/17 I received a call from my surgeon—it was good news. The pathology was back on the tissue and lymph nodes they removed from my body, and there were no cancer cells to be found. We had our clean margins (and then some) and no further surgeries would be recommended at this time.

I went into Dana Farber on 11/29 to meet my surgeon and oncologist for my follow-up appointments. The surgeon reiterated what a huge win this was on my journey, to have a pathologic complete response (pCR), with no cancer left in the tissue that we knew was cancerous six months prior. Jerry and I basked in the glow of this win for the few hours between appointments. We went for a walk, enjoyed brunch, stopped in a beautiful church on the way back. I felt incredibly peaceful.

Four hours after sitting down with my surgeon, we met with my oncologist. She also congratulated us on our win, and then detailed the post-surgery treatment recommendations: 12 weeks of chemo, followed by 6 weeks of daily radiation, rounded out by 39 weeks of an antibody that fights the specific type of cancer cells that were found in my body. All told, my social calendar will include appointments for cancer treatment through late 2018/early 2019. Cheers!

Learning that I was “cancer-free” and then learning the intensity of the treatments that still lay ahead has been difficult for some people to understand. I took a few days to process the information and to do some research online. What I’ve come to understand is that I’ve been very good at focusing on what is immediately in front of me, rather than worrying about what lay down the line. From June 13th forward my mission became to rid my body of cancer. I went into action the moment I was diagnosed, a full 29 days before my first chemotherapy treatment. For my purposes, it didn’t matter what kind of cancer cells I had, or how far they had gone, or how fast growing they were. What mattered was that I evict them from my body by any and all means at my disposal. Although I had already undergone a mammogram, ultrasound and biopsy through my local hospital, the specialists at Dana Farber like to double check things. They sent me for biopsies, ordered scans and analyzed tissue samples. As the results came back, many of them different than what I had originally received, my mission remained the same: kick cancer out of my body. Early July brought the news that I had two tumors, not one; I had grade III cancer cells, not grade II (grade III is the fastest growing types of cancer cells); the cancer cells in my body were strictly HER2+, not also ER+ (straight HER2+ is a more aggressive type of cell); and the cancer had spread to at least one lymph node, despite there being no physical indication of that in my clinical exams.

These had the potential to be very dark days. Some of them were harder than others, especially for those around me who didn’t inhabit my body, and couldn’t feel or know what I felt or knew.  The darkest day for me was June 23rd, the last day of school for my children, the day I told them I had cancer.  I physically felt terrible, which is unusual for me—throughout this cancer journey I’ve normally felt pretty good. Maybe I felt so unwell because I could finally acknowledge this illness in front of my kids? Or perhaps because I could fully feel the weight of the journey ahead? Having just met my doctors at Dana Farber on June 21st, I had not yet done the scans and biopsies that would reveal the true aggressiveness of the cancer I was facing. I didn’t yet know the “facts” of my situation. Filled with fear and uncertainty and physical pain as I lay in bed on the night of the 23rd, I knew I had a choice. I had to take control of the story that I was creating. On the darkest of days, I chose that this would be a story of healing.

The next few weeks were filled with appointments. I endured mammograms, ultrasounds, a bone scan, CT scan, and echocardiogram. On June 29th, Dana Farber biopsy day, I had 15 needles jammed into my breast; I learned that day that cancer bleeds, because of all the blood vessels the tumor has hijacked to feed itself. The swelling and bruising from that procedure stayed with me for 2 ½ weeks. During that window of time I couldn’t feel what was happening with my tumors; when I started chemo on July 12th, my doctor still couldn’t get an accurate measure. But I held fast to my story of healing, even as the results of the biopsies came back indicating that my breast cancer profile was as aggressive as they come.

On July 17th, five days after my first chemo treatment, the swelling from my biopsies finally went down, allowing me to feel what was going on in my chest. I did not feel any tumors. On August 2nd I went for my second chemo treatment, and my oncologist confirmed that she also didn’t feel any tumors. The bloodwork I had throughout this process all came back excellent. In the months leading up to my diagnosis, I felt the cancer in my body and I felt the energy of the tumor growing. On Saturday June 24th, the day after I consciously changed my story, I felt that energy lessen. In the space of fear and pain that I felt that Friday night, my brain wanted to think that I must feel so terrible because this is what it feels like when cancer is spreading. Creating the future from that space was not going to be good. In a conversation with Jerry I actively transformed the story from “this is what it feels like when cancer is spreading to “this is what a body feels like when it’s kicking cancer out.” The next 24 hours brought about a healing crisis, triggered by the numerous healing modalities I pursued while waiting to start chemotherapy. I ran a fever localized to my chest.  When the fever broke, the tumor felt different, less dense, less energetic. The mind-body connection is a powerful mechanism to behold.

At the time of diagnosis, it wasn’t helpful to dwell in how aggressive my particular cancer cells were. It was difficult to believe that I had cancer AT ALL; I chose to ignore that I had all the characteristics of a very aggressive cancer profile (HER2+ and grade III cells, a young age, local invasion). I barely read the multiple books I ordered online or checked out of the library. Of the multiple opportunities I had to connect with survivors (friends of friends, former classmates, or through Dana Farber support communities), I only ended up speaking to two. There were a few days when I could really have used that support, and on those days I wasn’t able to make the connections for a variety of reasons, all out of my control. By the time those connections were widely available to me, I no longer felt compelled to pursue them. I had faced the depths of fear and crawled my way back to the surface. The healing had begun.

From where I stand now, I believe that I didn’t feel a strong need to connect with people about their cancer experiences because a lot of people have not had great experiences with cancer. The amount of fear and sadness that encompasses a cancer diagnosis can be overwhelming. Those of us who have heard the words “you have cancer” join a club that has existed for as long as we’ve been able to study humans. Archeologists have found evidence of cancerous tumors in the remains of Egyptian mummies, along with evidence that those tumors were cauterized—cancer treatment has been around for a long time.  Hippocrates was the first person to coin the name cancer (he lived from 460-370 BC)—he called cancerous masses karkinos (the Greek name for crab). I recognized early on in my own cancer journey that, as a cancer patient, I inherited a cultural conversation that had been passed down for thousands of years. For many of the patients who came before me, cancer did NOT go well. I can see now that in my early days of cancer diagnosis, it was just as important to fight off the cultural conversation as it was to heal from the cancer cells.  I did not want to dwell on “what has happened to those before me.” I chose to test the limits of what’s possible. If I didn’t know what was “expected” or “typical,” then I could hang out in the land of possibility. It’s there that I found my power.

As I prepare to embark on the next phase of treatment, I’ll continue to hitch my star to the conversation around what’s possible. Am I delusional? Maybe. But it works for me. So much of healing from cancer or any major illness is a mental game. What stories are you telling yourself about your body? Is your body failing you or is it protecting you? Is that pain caused by a worsening illness, or is that the pain of a healing crisis? I don’t say this to diminish the experience of those who have gone before me. I’m not here to judge their journey, only to share my own. I like to think that we all have a purpose in our lifetime, and sometimes that purpose is served in death; for others, it is served in life. Sometimes the illness overwhelms the body and it is time for the body to release the soul. And if that had been my path, I hope that I would have chosen to travel it with power and strength and dignity.

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This post is dedicated to the millions of people who have gone before me. I am grateful for your sacrifice and contribution to our current understanding of cancer and its treatments.

Family

Family photo, Christmas Eve 2017

CoopSanta

Cooper with Santa. Cooper single-handedly inspired all of our Christmas spirit this year.

sunset

Christmas Eve sunset in Providence, RI

Coopbelly

Dad Bod Fanny Pack + Santa suit + Adorable 7 year old = Winning.

reading

A Christmas tradition…Jerry reading “‘Twas the Night Before Christmas” to the boys

Boys

Merry Christmas! 

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