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”

 

 

 

 

 

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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.

**************

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 , , , , , , , , , , , , , , | 2 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! 

Posted in cancer, chemo, Dana Farber Cancer Institute, Energy, Healing, Health, Intuition, Overcoming Challenges, Personal Growth, Release, Wellness | Tagged , , , , , , , , , , , , | 6 Comments

A Storm it was A-Brewin’

We’ve had a fairly peaceful 5 month stretch on the PANDAS front.  For anyone who may have missed what that is, it stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.  In children with PANDAS, instead of successfully fighting off strep, the body’s own strep antibodies cross over the blood brain barrier (which becomes permeable in the presence of the inflammation that happens during an active infection) and attack the brain.  With the brain under attack, PANDAS-afflicted children develop neuropsychiatric symptoms like Obsessive Compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD), Disordered Eating, Motor Tics, Anxiety, Aggression, Depression, Sensory and Sleep Abnormalities, Behavioral and Developmental Regression, and more.  Trust me when I say that, as a parent, it’s a heartbreaking and terrifying experience to watch your child go through.  One of the biggest problems with this illness is the lack of awareness.  Many doctors, therapists, psychiatrists, teachers, and parents don’t even know it exists.  Try looking on Amazon for books related to PANDAS the illness—I’ve only found five (and two of those are children’s books). Some children never get an accurate diagnosis.  Even with an accurate diagnosis, recovery isn’t a walk in the park.  Dylan started antibiotics on May 12th, the day I rolled into our primary care doctor’s office with my suspicions of PANDAS.  Thankfully he started improving within two weeks, and I was able to turn my attention to my own health concerns.

While I focused on saving my own life, the antibiotics worked their magic.  Within 10 days he was able to occasionally skip his compulsive nightly shower. By mid-August I felt like the scales were tipping with regards to his mood.  Lightheartedness found its way back to my son. Last winter and spring, his mood was very heavy, all the time. There was no joking with him, he no longer smiled or laughed with ease.  It was an incredibly difficult time for all of us.  Cooper lost his buddy.  We were all targets of Dylan’s frustrations and upsets, but he turned his wrath on himself more than any of us. Again, heartbreaking.

Spending so much time together during the summer will test the strongest of sibling bonds, never mind when PANDAS is part of the equation. As summer vacation drew to a close, I could feel Dylan’s anxiety increase. School started on September 5th, Dylan’s 11th birthday, and although I was grateful for a bit of quiet on the home front, I too was nervous about Dylan’s return to school.  Spring 2017 had been a nightmare for us, the most challenged I’ve ever been as a parent and he’s ever been as a child and student. With strep antibodies attacking his brain, even the most basic academic tasks were difficult to complete. For the first few days of school, I anxiously awaited news from Dylan’s day.  I can imagine the fear and anxiety he must have felt. Would it be like it was in the spring? Or had things truly changed over the summer months? When my boys arrived home each day I was greeted with smiles. As they played afterschool I kept listening for sounds of arguing or upset. Those sounds didn’t come. What I heard instead was JOY. It wasn’t until joy returned to our household that I realized it had been gone.

In September and October we settled into a familiar routine. Every morning Dylan took his vitamins and probiotics, every night he took his antibiotics and anti-inflammatory meds. Every three weeks I went to Dana Farber for chemotherapy infusions. We knew what to expect, at least until the end of October.  November would bring surgery, pathology reports, and plans for next steps. But in September and October our lives were stable, and for that we were all grateful.

On October 25th, I went for my final pre-surgery chemo.  November 1st brought my follow-up bloodwork, mammogram, ultrasound, echocardiogram and visits with my oncologist and surgeon. Mid-to late November would bring with it surgery and recovery. We were all on edge about what was to come. Right around Halloween I noticed a change in Dylan’s temperament.  In PANDAS speak we call such regressions or backslides “flares.”  Was it the extra sugar from Halloween candy that triggered it?  Was it anxiety over my upcoming surgery?  Or was something else at play? With so many stressors in our lives this year, it’s been tricky to know exactly what’s causing what. At some point this fall, my children lost all patience with each other. Was it gradual or did it have a start date? Is it because I tried to change the fish oil gummies on them, and they didn’t like the taste so they stopped taking them?  Could that be the reason they were fed up with each other? In the haze of my own medical journey, I lost track of cause and effect journaling. By early December it was clear that a storm was a-brewing, I just wasn’t sure what.

Last Tuesday afternoon I picked the kids up from school. Cooper and I had a date for a blood draw. When someone in the family suffers from PANDAS, it’s important to check all the other family members (and the dog, if you have one) to see if anyone is a strep carrier. My doctor gave us lab requests for this on June 12, the day before I received a cancer diagnosis. It took me until December 12th to complete the task. On Tuesday evening Jerry and Cooper had a date to get our Christmas tree.  That’s when the storm hit.  After 3 ½ weeks of successful surgical healing and no issues, I spent the evening in the Brigham and Women’s Urgent Care.  The diagnosis was cellulitis (an under the skin infection) in my breast. With some IV antibiotics in my system and a 10-day prescription for some MRSA-fighting meds, I headed home.  Tree procurement was postponed to Wednesday night.

This past week has been full of steps forward and steps back. I would seem to be healing from my infection, and then it would flare up again, red and warm to the touch. On Thursday Dylan and I had our first appointment with a new therapist that’s trained in ERP (Exposure and Response Prevention), a necessary component to healing from OCD. Cooper came home from school on Friday in tears, sad because his stomach had bothered him throughout the day and he had spent a chunk of time in the nurse’s office. Jerry and the boys saw the new Star Wars movie on Saturday afternoon. Saturday night we finished decorating our tree. As Dylan hung the various ornaments he had made for us throughout the years, he looked sad.  I pulled him aside and asked what was up. My sensitive, thoughtful 11 year old son started crying and told me that seeing all the ornaments from when he was younger makes him think he was so much happier then than he is now. I hugged him and we cried together.

Sunday brought more ups and downs. The kids each had a school friend over, and we hosted “Little Dude-fest” here. They had epic light saber battles, video game showdowns, and sledding adventures. Despite all the fun times, Dylan’s PANDAS was flaring. By Sunday evening I was exhausted and depleted from my attempts to buffer Dylan from the world of upset and frustration. I had a 9am Monday appointment with our primary care doctor, to follow up on our families’ myriad medical mysteries. I spent Sunday night reading a guidebook for PANDAS, making notes, and preparing for our doctor visit. Desperate for relief from his symptoms, I started Dylan on CBD oil Sunday night before bed. It’s the same oil that my naturopathic doctor prescribed to me for cancer treatment.

I had planned to go to the doctor by myself, but when I woke the kids on Monday morning the first words out of Cooper’s mouth were “my stomach hurts.” In January 2016, Dylan had a strep infection that went undiagnosed because it presented as severe stomach pains. He never had a sore throat or a fever, and it took me a week before I brought him to the urgent care. That may have been the infection that tipped the scales in the favor of PANDAS.  I may never know. But I know now that strep can be asymptomatic and can present as just stomach pains, so I opted to bring both kids with me to the doctor visit. You know things are rough when the family member facing aggressive cancer and battling a post-surgery cellulitis infection is the “easy” case.

The results from my and Cooper’s bloodwork had come back. I tested negative for strep antibodies, but Cooper’s titers were in the 750 range (200 and under is normal). No wonder the kids have been at each other’s throats—Cooper is literally the trigger for Dylan’s PANDAS flare. Would Cooper’s antibodies have been that high back in June?  I don’t know. Is he a strep carrier or just fighting an active infection? I don’t yet know. Based on his symptoms, we’re treating it as an active infection. Cooper started a 10-day course of antibiotics yesterday. After dropping the kids at home, I zipped up to Boston to have my cellulitis infection checked.  Despite a rocky start, things improved over the weekend when I added in my natural remedies to help fight the infection.  A little high-powered antibiotic here, a little Echinacea and turmeric there, a lot of coconut oil spread on my skin. I am healing.

I returned home yesterday afternoon feeling tired and raw. I was NOT looking forward to the boys’ constant bickering. I’m grateful to report that we had an incredibly peaceful afternoon and evening.  The kids built a box fort above the garage.  Cooper kept calling himself “a carrier.” They laughed and played and supported each other, like the good old days. Maybe they were peaceful because they could tell I was hanging by my last thread, maybe the CBD oil had helped Dylan’s nervous system calm down, or maybe it was the realization of how integral we all are to each other’s health. May we have more peaceful energy in the days and weeks to come.

ornaments

Ornaments through the years.

dylan2012

A 6 year old Dylan, full of joy.

laundry

To fight the strep monster, I’ve spent most of today disinfecting every possible surface in my house, stripping beds and pillows, and doing laundry. SO. MUCH. LAUNDRY.

Posted in cancer, Energy, gratitude, Healing, Motherhood, Overcoming Challenges, PANDAS, PANDAS illness, Parenting, Strep Virus | Tagged , , , , , , , , , , , , | 2 Comments

Into the Mystic

My silence on here shows up in my reality in certain ways. It means I’m holding on very tightly to life. It means I’ve probably stopped writing. For me writing brings release and flow and transformation. When I’m holding on tightly to life I don’t want flow, I want life to be static. I want to NOT GO ANYWHERE. I want to stay where I am because where I’m going is unknown and it may not go well. At least where I am is somewhere I’ve come to accept: I’m okay here.

Holding on tightly makes my body ache. I stop stretching. My skin reacts to things and little patches of eczema pop up. I eat poorly (for me) and my body feels imbalanced. A detox specialist explained cancerous tumors to me as the body’s defense against too much acid. Now I have the distinction of alkaline vs acid to consider when my body feels out of balance. I wonder if that imbalance is feeding or creating cancerous tumors.

When I fight the flow I drink too much (for me). Inherited from my Irish heritage is a body that is extra sensitive to alcohol. I sometimes wonder if alcoholism is like an allergic reaction. The drinking is a coping mechanism. Again, probably inherited from my ancestors. Every year I choose stretches of sobriety to remind myself that I can have a say in how that gene gets expressed. Right now I’m settling into a 3 month stretch of sobriety to provide my body an optimum healing environment.

With a vice grip on life, distraction is my best friend. I resist connection to reality. I feel like my head is disconnected from my body: I’m a space shot, unfocused and yet constantly busy. I yearn for control and my perfectionist tendencies kick into high gear. My to-do lists have to-do lists.

Holding on tightly leaves me feeling uncomfortable. Something feels “off.” My relationships suffer. I experience contraction instead of expansion. I question myself on the inside while showing a brave face. I don’t want to be here and yet I don’t want to go anywhere. I’m full of contradictions. I feel trapped. Toxic. Heavy. Consumed.

This past weekend I went away for two days. Jerry joined me for one evening and one evening I took for myself. I needed to get out of my home (my workspace) if I had any hope of shaking this unworkable behavior before surgery. I needed to let go of the need to hold on. I had to create something new for myself. The surgery I experienced yesterday was a practice in release. Although my hand held no scalpel, I participated fully in my body’s release of the tumors and corresponding lymph nodes. In order to release, I needed to prepare. That preparation brought me to Mystic CT.

What I created on Monday 11/13 was this:

I feel grounded. Peaceful in the midst of chaos. Clear-headed. Aware. Intentional. Connected to the reality that I’m powerfully creating.

Yoga. Daily stretching. Walking. Movement. Checking in with my body. Meditation. Comfort. Peace.

Satisfied. Loving. Compassionate towards myself and others. Well-rested. Nourished. Adored. Accepting. Instinctual.

Challenged. Successful. Brilliant. Wondering. Conduit. Flow. Receptive. Blessed. Child-like. Mature. Wise. Playful.

Magnetic. Charming. Charismatic. Empathic. Trusting.

Gather. Grow. Courage. Release. Show up. Play big. Thought leader.

Flush. Cleanse. Alkaline. Balanced. Grounded. Real.

Light. Glowing. Grateful. Supported.

Sanctuary. Alone time. Self-discovery. Creation. Clearing. Release.

A note about numbers and dates:

I received my cancer diagnosis on 6/13/17. I immediately went into action to clear the cancerous cells from my body by any natural means possible, including reiki, acupuncture, cannabis treatment, alkaline/acidity balancing (I ate a lot of fruit), turmeric, oncology massage, supplements, journaling, mentally and verbally creating a new story for myself, and probably some other things I can’t remember right now. On 6/24/17 I created a “healing crisis” in my body–I ran a fever in just my chest area and when the fever broke I could tell that the energy of the primary tumor had lessened. On 7/12/17 I started chemotherapy treatment (a clinical trial that targets HER2+ cancer cells). Right around 7/17/17 I felt the swelling from my multiple biopsies (performed on 6/29/17) go down, and I noticed I couldn’t feel the tumors anymore. On 9/17/17 I celebrated my 41st birthday. On 11/13/17 I wrote the words above; for me that’s when I reconnected to reality and set my intentions for this next phase of healing. On 11/17/17 I released my tumors to the surgeon and the pathologists, and along with them all the stress and worry and unhealthy thought patterns or behaviors that have permeated my life for the last few years. Peace out, cancer…and all that you represent.

Posted in cancer, Energy, gratitude, Healing, Intuition, Life Passages, Overcoming Challenges, Personal Growth, Reflections, Release, Retreat, Wellness | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 6 Comments