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Posts Tagged ‘chemotherapy’

In the midst of the cancer treatments during the summer of ’09, friends sent this fabulous audio get well card  that featured Gilda Radner as Roseanne Roseannadanna kvetching – “I’m depressed, I get wet, my face broke out, I’m nauseous, I’m constipated, my feet swelled, my gums are bleeding, my sinuses are clogged, I’ve heartburn, I’m cranky, and I have gas” – which pretty much summed up how I felt.

The three days of support drugs after each chemo infusion were rugged, and the cumulative effect made the aftermath of the fourth and final infusion much worse. In addition to the complaints listed above, I also had disrupted sleep, headaches, head sweats, an icky metallic taste, a crash-like fatigue and Post Traumatic Stress Disorder.

The PTSD was a surprise. I had expected to feel so grateful and relieved that the worst was behind me, and instead I felt anxious with wormy thoughts like: “What if the chemo didn’t work?”

The very nature of PTSD is that the past haunts the present, and, as is often the case, my fears were fictions about the future. All of my heebie-jeebies were products of my mind zig-zagging through time, thus, to calm myself down, I needed to train my thoughts on the now in which all was safe and all was well regardless of physical discomforts. I needed to breath into my feet, and to be very zen thoughtful in my actions which was easy to do since the chemo made me sloth-like. A wise soul had once told me to “move a muscle, change a thought.” So, every time a squirmy idea surfaced, I got my sloth-like self up off the couch and washed a dish or dialed the phone or did a little Qigong.

A very little Qigong was all I knew, but those few flowing motions connected to conscious breathing and attention to energy were so soothing. Qi (or chi) is Chinese for “vital life force” and gong means to “practice with skill”, and, although I did not feel skillful at Qigong, I believed that I was increasing or enhancing or harnessing my vital life force merely by taking the action and having an intention to access healing energy. It was like giving Reiki to myself, and, I think it’s the same. Reiki, Qi, White Light – healing energy by any other name would be as sweet.

And, contributing to the sweetness of my qigong experience was that my teacher was a darling man from Spain named Nacho. Nacho from Valencia was interning at the peace organization where I work and I liked him instantly because he did not blink an eye when he was introduced to bald me. He may have never considered my physical appearance as he seemed to view people’s essence, but I felt a need to explain; and as soon as I told him that I was bald due to chemo for breast cancer, he insisted that he would teach me qigong. I thought that qigong might entail yoga-like contortions or require marshal arts-like stamina and so I politely refused. Nacho would not take no for an answer though and organized a little class for the entire organization. My colleagues provided peer pressure as well as support, and a lot of laughs. And, as it happened, those few simple moves that Nacho taught us that morning would become immensely helpful for me in those PTSD days after the final infusion.

Another aid for my PChemoSD came in an out-of-the-blue phone call from a friend who had experienced more rigorous chemotherapy on two different occasions that involved different perhaps stronger drugs and longer courses of treatment. This woman with extensive experience confirmed that my fears were natural. When I told her about my anxieties, she told me that she confronted the same what-if-the-chemo-didn’t work fears at the end of both of her rounds; and I exhaled.

I find that “me too” are the two most healing words ever spoken.

In gratitude, L.

ps. I need confess that I am losing steam for Lump Lessons. My intention is to write one more post about radiation, and perhaps an epilogue, and then on to other projects. It has been two and 1/2 years since this blog journey began and it has been an extremely healing endeavor for me. I believe that writing and sharing has been my aftercare. My hope is that there have been a few readers that have had “me too” healing moments along the way.

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The morning was golden. There was a golden glaze on the river, golden glints on the George Washington Bridge, and the stalagmites called Manhattan were glistening. I had sun and a smile on my face. This was the morning of my last chemo infusion. I would be done with the hardest part of the cancer treatments after this day.

Along with my bag full of chemo props, I carried an arm full of red roses to the hospital to say thank you and goodbye to the folks of the 9th floor infusion ward. It was the 4th round, the fourth element of water, and it had occurred to me that water is a symbol for emotions, but I did not anticipate any teary goodbyes. I liked everyone on the 9th floor alright and was grateful for their participation in saving my life; however, I had no grief about parting ways. Nope. None. On that golden August day I only had my eye on the end point; and, so, I was totally unprepared for the white waters that lay ahead.

The Universe knew that I would need help though.

There was only one other couple in the oncology waiting area when I arrived for my pre-infusion check-up. While Reade, my husband, and I chatted and scanned the newspaper, I noticed that this couple was looking at me. She was a lovely Asian and her male companion was Asian too and, as they glanced in my direction, they exchanged words in their native tongue as if they were whispering behind cupped hands. They were talking about me; and, given her full head of glossy black Asian hair, I guessed that they were intrigued by my bald head. I sensed that she was curious and wanted to talk with me, so I looked at her and smiled. No sooner did the upturned corners of my mouth lift my cheeks, then Anna rushed over to introduce herself. Indeed, she was curious – today was Anna’s first infusion day.

Just as the angel in the auburn wig (last paragraphs of this former post)  was there for me when I was scared about stepping onto the chemo track, I could now be there for Anna. I could pay it forward. I could tell her about lemon & ginger water and assure her that the nausea is manageable and give her a general overall pep talk. I could tell her about the choices that worked for me like the preemptive shaving of my head and how baseball caps were less scratchy than wigs. I could say, “It wasn’t so bad. People cared for me on my down days, but mostly I walked slowly and really paid attention to flowers;” and then, I could hand her a long-stemmed red bud.

We hugged.

And as I moved from station to station that morning – from check-up room to blood lab to doctor’s office – I’d see Anna and her companion, clinging to each other, seeming anxious, and she’d be clutching her rose. Then, when I was finally assigned an infusion chair, and at long last on the west side with the Hudson river views which thrilled me since the element for the fourth round was water, as Fate would have it, Anna was assigned the chair right next to me.

So, when there was a two hour delay as the wonderful singing nurse named Jennifer, through no fault of her own, blew two of my veins and then couldn’t find a vein that wasn’t collapsed so there was an imminent threat that I was going to be sent home, I didn’t panic for Anna’s sake. And, when Jennifer finally hooked me up and the needle hurt, I didn’t grimace, and when another allergic reaction to the adriamycin  swelled me up, turned my eyes bright red, and made me think I was dying until the benedryl shot knocked me out, I didn’t fret out loud. I stayed strong for the entire fourth and final round for Anna.

Anna and I exchanged a few emails in the months to come in which she repeatedly thanked me for the pep talk and the rose, and I tried to convey to her that I did nothing but embrace a gift. And, now, when I reflect, I don’t dwell on how painful and terrifying the experience was, I think only of the infinite wisdom of the Universe that knew that I needed to be somebody’s angel for a day.

In awe,

L.

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It was difficult to write while I was weak and loopy from the amassing drugs which was fine because I had a sublime acceptance of the condition. In fact, I enjoyed the slow mo tempo that chemo brought to the summer of ’09. Not since my childhood – before pc’s and cell phones and with limited tv – had I become absorbed in the velvet folds of a dahlia or marveled at the gold on sun-drenched grass as I sat amid it. Plus, I knew that “this too would pass” which was both a comfort and a concern for me as I worried that this season of luxurious lethargy and prodigious kindness – the entire chemo trip – would pass without remembering if I didn’t write it down. So, while the steroids kept me buzzed at night, I came up with a plan to make gratitude lists that would both keep my spirit boosted in the present and jog my memory in the future.

In the weeks between the 3rd & 4th infusions, during the hours usually reserved for journaling, I sat with my big black book and reviewed the blessings of the six months since being diagnosed with breast cancer by way of listing names. This is the book.

The card on the cover of the book is from dear friend Rooney from Santa Fe, NM. Rooney sent this card to report that she had all the Sisters of a nearby convent praying for my health. Little did my friend know how much Our Lady on Fire would speak to me at the time of the 3rd Infusion.

This page was in appreciation of Western Medicine and all the angels therein.

In honor of my beloved Light Brigade.

For my family.

There were nearly a dozen pages that included the Reiki circle, friends, colleagues at work, church communities, neighbors, people from the health food store… the lists went on and on, and so does my gratitude for each and every one named as well as those that remained nameless like the praying Sisters in Santa Fe. If I’ve said it before, I’ll say it again, it was the love from all y’all that really healed me.

In awe,

L.

 

 

 

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Brush fires continued in my foothills for the two weeks between chemo infusions #3 and #4. The chemicals were apparently gaining strength and, I supposed,  battles were waging within that had enemy cells and innocent bystander cells dropping like fumigated insects which made me want to drop for prolonged hours on the couch. But, I resisted battle fatigue which made me beastly tired and, therefore, burning with anger.

Why did I resist lying down, you might ask? Well, there were forces of nature at work, my nature.

During this round of chemo, my youngest siblings came to stay for a few days. My baby sister Sandra arrived the day before to take care of my daughter during my day in the hospital and then had every  intention of taking care of me too. Sandra is very responsible, reliable, capable, smart and energetic, and I was thoroughly thrilled to have her help; but she’s six years younger than me. My auto response is to take care of her. It doesn’t matter how wise and strong she has proven herself to be as an adult, my inner child regards her as my baby doll. And I could not let my baby sister see me down.

Then my baby brother flew in from CA. Chris was born the year that I left home, so I didn’t have a chance to mother him the way I tried to mother my sister. Instead, he was like my little prince and I was a Knight-errant off on exotic adventures who returned bearing gifts and tall tales. I wanted to be exalted in his eyes.

And, even though he had, by this time, served as an officer in the navy, traveled the world, was a leader in business, a husband and a father, I still felt protective of him. Or, more likely, I felt protective of my exalted image. (I suppose all attempts to control other people’s feelings are self serving. Huh?)

Anyway, my brother was also the only person other than my daughter who openly wept when he first talked to me about my cancer diagnosis. It was such an amazing, honest moment. I wept a little too. Then I sucked all my tears deep inside of me and consoled him with promises that I was fine. “Just learning a lot. That’s all.”

Perhaps I needed to keep my shoulders squared and chin up while I was fighting the good fight, and maybe I needed to act as if I was fighting fit to bolster my spirit; but, after two surgeries and 3 rounds of chemo, I was truly tired and pushing myself was foolish. Still, I served food, made beds, stayed up late to chat; and, even though my sister begged me to rest and my brother never asked me to lift a finger for him, my firstborn pathology was slave driving me. It was crazy. I was like an old prize fighter holding on to the ropes with my pride. And, crazier still was that I blamed everyone else for my pummeling.

Oh, not out right. I tried not to let anyone know that I was smoldering with resentment. I kept on marching, concealing the truth behind my stiff upper lip.

But at night, the truth came to get me.  Just as there was an accretion of the chemo in my system, the support drugs had also gained momentum and the steroids, in particular, were making me really trippy. In addition to twisting nerves and tensing muscles, making me overall wiry (which is probably why I had the energy for soldiering), every time I closed my eyes to sleep, goblins and zombies and all sorts of horrors swarmed my third eye. It was as though the veil to the 4th dimension had ripped and all of humanity’s darkest thought forms had infiltrated my head. None of the sweet things of the human imagination like unicorns and sugarplum fairies visited me though which made it clear to me that Dante’s Inferno was within me. There was no running or fighting or putting up a brave front. These steroid ghouls were rising up from my deep dark subterraneo, the cellar where I housed all my fears.

At the time, I prayed and prayed and blamed the drugs and waited for the horrors to pass to retreat into much needed sleep. But now, as I review that experience in this blog post, I realize that those zombies in my mind’s eye were actually harbingers of healing. Maybe they were the cancer cells or my cancerous ideas screeching as they went up in flames; or, more likely, they were symbols of my repressed fears of disease and mortality and, even worse, of being unlovable as a flawed human. Aided by the steroids, the blessed brush fires had flushed the fiends from the dark forest to be vanquished by the Light.

And all shall be well and

All manner of thing shall be well

When the tongues of flame are in –folded

Into the crowned knot of fire

And the fire and the rose are one.

~ T.S. Eliot

In awe & gratitude,

L.

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Each round of chemo had its distinctions. By the third go round I looked like a seasoned player with my bald head and slight swagger for knowing my way around the chemo ward; but, the truth was, I dreaded this infusion. My fear of needles was rippling through my brain waves, gripping my stomach, twisting my nerve endings. I didn’t want to be a pin cushion again. I didn’t want the initial blood test to check the white cell count, I didn’t want to endure the botched attempts at finding a strong vein. My supply of courage felt depleted. So, I needed to refuel.

Something that occurred to me in the meditative hours between infusions, as I thought about having completed two rounds – just two more to go, I was half way home – was that there were four rounds. Four. Four corners, four legs, four seasons, four directions, four elements – “1, 2, 3, 4 Tell me that you love me more (Feist).” In numerology, four is stability, the builder, and a sort of completion in physical. I wanted these four infusions to be a complete circuit of chemo healing for me and so I determined to honor the fourness of this process and recognize or honor the elements and directions.

There was a song in my head then – it’s in my head now and has been in my head for days, prodding me to write this post – that goes like this: The earth, the air, the fire, the water, return, return, return, return….  The chorus is sung over and over again like wild folk dancers, holding hands, skipping swiftly in a circle around a blazing fire until the mad circling and the song whirl into one.

the earth, the air, the fire, the water

The song seemed to beckon to me to dedicate each round of chemo to an element in the order the elements were listed in the chorus. Rounds 1 & 2 were behind me, so I honored them simply by meditating on each experience and its connections to its respective element.

The first round was earth, the spirit of the north. The first round grounded me in the physical experience, the reality, of chemotherapy. I was introduced to the room, the chair, the players, the system, the instructions, the needles, tubes, plastic sacks of chemicals, plastic mug of ice cubes, miniature cup of support pills; and, therefore, I learned my needs and that I needed  to advocate to have my needs met.

The second round was air, the spirit of the east. The second round was about implementing ideas and breathing my life into the infusion experience. I spoke up and let the winds blow away all that I didn’t need. Then, that which would work for me – a gentle nurse, a loving outlook – was inspired and respirated. I inhaled and exhaled slowly, deeply, meaningfully.

And, now, the third round that I’d been dreading took on a measure of excitement for me as I thought on it as the element of fire, the spirit of the south. Fire is passion, thrill, drive, ambition – I love fire. But it also burns. Therefore, thoughts of fire ignited some fresh fear in me. So, on the evening before infusion day, I emailed my beloved Light Brigade to explain my dismay as well as to describe the refreshed attitude I hoped to bring to the experience, and requested an extra oomph to the energetic support that they offered me.

Gina, our High Priestess, responded with an added note to my idea for honoring the elements and directions, specifically the 3rd round of fire. She wrote: In the Celtic system South is about song- so I propose that we all sing out gold to Linda tomorrow. You can just segue from one Goddessy song to another. I’ll send you out some lyric sheets if you think that would be helpful Let me know.  Linda- We are right there with you girlfriend!!! Do you want anyone in person??? Any songs in particular that sound helpful??

I don’t know whether it was the notion of music that had “the charm to sooth my savage breast” or if it was the offer of accompaniment, but I walked bravely into that fiery third round. As it happened, it was more arduous as the chemo was amassing power and I had an allergic reaction that made my face swell and eyes flame red. Yet, somehow I trusted the fire as a cleansing agent and was at peace with it all. It was as though I was being carried by the hum of a celestial choir.

My sister/friend recounted the experience in an email that expressed my gratitude to the Light Brigade:

Hello Lovelies,

I’ve heard from Linda and she is home, calm, resting and well.  She reports to me that she woke up singing and that indeed today was filled with song.  Over the course of the day and at appropriate moments song could be heard, at the nurses station, here and there – lifting her up.  She felt our holding her in a harmonic embrace.

Seems each treatment so far has brought her new challenges and soulful preparations in how to deal with her worries.  I am glad that in some small way we all have been here to support her through.  Reade was again with her today and steadily at her side.  She tells me she had a reaction to one of the drugs, so they gave her Benadryl to combat the reaction, so on top of everything else, she was in a sleepy, Benadryl haze as well!   The reaction manifested around her eyes, so send some healing to her vision and mind/eye centers.

Needless to say a few days of rest, healing, recovery …. and our continued light, love, holding, lullabies and golden hugs pouring over her house and heart are welcome!

In Her Service,
Deirdre

This is a Celtic song that my friends sang that day called the Prayer of Strength:

   Atom-riug in-diu

 Niurt nime

Soilsi greine

Etrochtai esci

aini thenet

deini lochet

luaithi gaithe

fudomnai maro

tairismigi thalman

cobsaidi ailec

Translated:

Today I go forth with

The strength of the Skies,

The brightness of the Sun,

The splendour of the Moon,

The brilliance of Fire,

The swiftness of Lightning,

The speed of the Wind,

The depths of the Sea,

The steadfastness of the Earth,

And the steadiness of Rock.

In awe,

L.

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About being bald. It was similar to being pregnant. Actually, the cancer treatment experience was similar to being pregnant in that the first four or five months were private – only my near & dear knew what was going on. As soon as the belly popped or my hair came off, the experience became public domain. When I was pregnant, there were those with poor boundaries who felt they had carte blanche to touch my belly, and a few that made thoughtless remarks about the apparently large size of my baby; but most people were exceedingly kind and proffered glowing compliments or blessings, held doors, and gave up their seats on the subway, and, for the most part, I enjoyed the extra attention. Which was also how I felt about being bald.

There was only one instance in which a person thought that bald was a fashion choice; all others knew that hairless meant cancer and few hid their concern. Because people were generally lovely and caring, I didn’t mind their questions about my health or the conversations that ensued, the stories that folks shared about how cancer impacted their lives. Those chats were always positive and uplifting at best, and informative at least. There was only one instance in which my bald head attracted a disturbing incident.

A man, a stranger, encountered me in a health food store and assumed that my treatment plan was up for discussion. He had strong opinions against chemo therapy and couldn’t understand why a health-minded person such as myself who chose to buy organic would also choose to take the poison. Like a pesky mosquito, he followed me from the produce section to the juice bar buzzing about my ear with his opinions until I turned on my heel and swatted him.  Actually, I wish I swatted him. I think I said, “thank you for sharing,” and ran off hyperventilating.

What I wish I had said was “God forbid you ever have to find out what you would do if faced with the decision to trust your oncologist’s expertise or not; but until you have a cancer experience, keep your opinions to yourself.”

(Phew, that was cathartic.)

Otherwise,as I said, like pregnancy, bald was an amazing experience, but I’m grateful it was temporary and that I, once again, can blend in with the rest of the hairy human race.

In awe,

L.

ps. Photos courtesy of the enormously talented, generous, and lovable Carolina Kroon.

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Acadia & Grace in front of a yurt

My daughter Acadia was told that I’d have the 2nd infusion and, thus, lose my hair while she was away at Frost Valley Farm Camp, but she forgot. She was a 12 year old kid going off to her beloved Summer camp and had swimming, canoeing, goats, chickens, & friends on her mind. She didn’t clock the forewarning, or maybe she entered into a healthy denial in order to enjoy her s’mores at the campfire which was okay – it was my hope that she’d be in her moment and frolic about the farm without worry. However, the only fear she had expressed since my cancer diagnosis was that a bald head would make me look sick, and, therefore, her memory lapse made pick-up day traumatic.

As we drove along the dirt drive to the camp, I donned my favorite red baseball cap and readied myself to embrace my girl. Acadia saw our car approaching and ran out with her friend Grace to greet us, but when we turned into the parking lot, she stopped short. Her jaw dropped. The color drained from her face, and she turned on her heel and ran back to her yurt. I leapt out of the car, signaled to my husband to stay and raced past her abandoned friend with a quick, “Hey, Grace,” and as I ran I prayed. I didn’t know what I was going to say, and in the flurry, I only managed a quick “Help Me” prayer before I was inside the yurt looking at my daughter’s back while she cried and wouldn’t face me.

I looked around to get the lay of the land and was relieved to discover that there were no other campers, none of Acadia’s peers were in the space, which somehow gave me permission to focus on me, mine, and this situation. Her two counselors were there sitting on a bunk and looking at us wide-eyed, but they seemed like buffers rather than censors. So, by way of explaining to the older teen-aged girls, I tried to let my daughter know that it’s okay to have hard feelings.

I told the counselors, “I’m on chemotherapy for early stage breast cancer. When Acadia left home for camp two weeks ago, I still had all my hair.”

The counselors shook their heads rapidly. Acadia’s shoulders jumped as she sniffed a few times. The air in the yurt felt thick with swirling thunderheads.

I continued, “So, this is the first time she’s seeing me bald and, naturally, she’s shocked. But,” I whipped off my baseball cap, “just touch it, Acadia. My head’s fuzzy like a tennis ball.”

And, just like Olympia Dukakis breaking the tension for the grieving Sally Field in Steel Magnolias by suggesting that she take a whack at Ouiser, the surprise element worked. Acadia sniffed and then she giggled.

“Go on, give my Buddha head a rub. It’s good luck.”

My daughter turned around, faced me, and smiled.

In awe of the power of prayer and mirth,

L.

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