I didn't get the news I hoped for yesterday. There are some new questionable spots lighting up on my PET Scan. We are working on digesting the news and formulating a plan. Thank you for continuing to keep good thoughts for me.
"The Spirit Within" 32" x 17" I have said this before...but I'm always in wonder of the process of creating art....For me, it feels like falling in love. That is understandable because the energy used in creating, and in falling in love comes through a completely opened heart chakra and when you're open and the energy flows so easily, one just feels blissful. :) This piece completely has taken my heart. I place the piece in front of me, when I'm done working on it and I listen to what it tells me. This piece speaks to me of opening the door to the sacred space of our spirit. The door is always there to enter and the key to entering is our willingness. I love the mystery of this piece. It looks very old like it has been in some ancient castle, hidden from the world until now.
There is a small antique box that opens to reveal an antique key with little Swaroski rhinestones. Under the box is a opened hand....open and beckoning with trust and promise.
Here is the box closed. I love when one has to participate with art. The photo doesn't show it well, but there is a triangle shape of iridescent glass in a beautiful shimmering blue bordering the top and bottom of the glass.
Here is a closeup of the door handle...a beautiful filigree metal piece that I discovered in an antique store.
This is my favorite part! I have created what looks like drips from a candle on the piece and I attached in the upper left hand corner a wonderful really old melted candle that was in an antique candelabra that I have and it looks like it is dripping all over the piece.
Here you can see the iridescent glass triangle a bit better. The piece is in colors of deep black brown, ivory and gold and so the iridescent blue glass is the only spot of color....and also the cathar cross above the box that has a tiny petrified nautilus shell in the middle.
The focal point of the piece is an image of a Shrine that I created. It is covered with a sheet of the wonderful bronze colored mineral mica.....around the mica is tempered glass and all of this is in a art nouveau frame. Antique French journal pages 1882, hand written vintage music sheets, handmade paper, tempered glass, antique box, antique key, metal hand, image of artist created Shrine, antique art nouveau frame, cobalt blue crystal orb, very old melted candle, dark grout, Swarovski rhinestones. Reiki Blessing: Dai Ko Myo My intention is that the energy of this symbol radiate from this piece to bless those around it.This is the most powerful symbol in the Reiki group. This symbol is used to heal the soul. It is defined as "the treasure house of the great beaming light” and is considered a Zen expression for one's own true nature or Buddha-nature. This symbol helps to provide enlightenment and peace. With practice this symbol brings profound life changes. $1500.
"There is a vitality, a life force, a quickening that is translated through you into action, and there is only one of you in all time, this expression is unique, and if you block it, it will never exist through any other medium; and be lost." ~Martha Graham
I once again feel very, very good. Last night I actually paused to check if I was still breathing because I was breathing with so much ease. I have no fullness in my chest and no twinge over my heart when I breathe deeply. I've made a full recovery since the cold that sent me down into the depths of fear. My mood and outlook are a million times better, and I am again completely focused on moving forward. Tomorrow will be an important part of that movement: my Day +133 PET Scan – the one we bumped from last week.
I'm pretty psyched up for it rather than psyched out. This has never happened. Of course I still have plenty of anxiety and worry, but I feel as confident as I think is possible going into one of these things. I feel ready: Let's do this thang. Maybe that's why I had a rough patch there. I knew there was something else going on and didn't want to spoil results. I'm now much more ready to handle those results – whichever way they might swing. I feel fantastic by my standards and that's what matters.
I've been spending a lot more time doing everyday regular person things with very special people in my life. That has made a world of difference to my psyche. I'm not allowing myself to be a recluse anymore. I already did that to the extreme – not by choice – this entire summer. This month I'm going to work on pushing myself to be uncomfortable because I've realized that once I get past that initial paranoia barrier, there are so many positive moments to be had, and that I deserve. I'm starting to hit the tipping point. I need to grasp the concept that I can be a little more reckless, more easygoing, more challenged in exciting ways. I guess what I'm saying is that I'm again trusting myself to take the reigns of my life and gallop wildly into its next beautiful adventures.
What I do struggle with is trying to look back and process all that I've gone through. I was so busy pushing forward and focused on finding health among nonstop treatment that I didn't spend much time thinking about what was happening to me. What I did was make the best of my situation every day. I didn't have the time, mental, emotional or physical capacity to be able to comprehend how dire my situation was at moments. All of this time I never felt sorry nor grieved for myself. Now that I'm peeking out the other side, I can't believe where I've been and what I've overcome. And not just me, but everyone whose life I am a part of.
This reality gets more and more haunting and difficult with each day. Until I've started to feel better I had no idea how really sick I was while taking all of those treatment drugs. At those times I just adapted and pushed through. Now I'm so proud of myself for being capable of doing that, but so sad to think that I had to and so sad to think of what others watched me endure, yet somehow remained steadfast in keeping me going despite how it affected them.
However, lookingforward is getting to be less intimidating and more thrilling with a capital "T". I am incredibly grateful for that and deeply hope that tomorrow's scan and appointments will bring me even more confidence and more freedom to live my life with.
One of my friends and biggest inspirations, Matt, who is also recovering from an allo stem cell transplant told me to:
"The Soul of Sunrise" A new Reiki piece. I love the colors inspired by a beautiful sea shell which Nature paints just as it is shown. The hand carved wooden pieces on both ends are sunflowers and are antique pieces that I collected years ago. They seemed just right for this piece. Available for sale: $ 1200.
Hidden within...The Reiki Blessing "Dai Ko Myo": This is the most powerful symbol in the Reiki group. This symbol is used to heal the soul. It helps to provide enlightenment and peace.
I've completed "Bella's Angel" which is #6. I'm so thrilled with this idea. I could just pinch myself! Each granddaughter will get a necklace with a photo of their angel within, and a t-shirt with the same angel photo, to sleep in...but they won't see their paintings till they arrive for their traditional Easter week, here in Kawela Bay...where their Angel painting will be waiting for them on their bed. I'm just tickled with excitement of that meeting. "Bella's Angel" turned out very fairie like...which is definitely Bella's energy. What I have loved about this process is that I don't intend to paint in any style or with any color...the angel just shows up as it does. When I am done, I step back to see the painting with fresh eyes, and I can see each of the girl's particular energies showing up in the piece. I love that! Bella is our fairie child, as is her angel.Bella walked on her toes for the first many years of her life, hesitating to land on earth.....she is light and girlie and she is our fashion princess.
"Kobain's Angel" Kobain's angel is strong and confident. Kobain just turned 11 yr. old and she is a beautiful and very capable young girl. She carries confidence and leadership in her very being. I think she will be a great teacher like her mother and aunt.
"Presley's Angel" Presley is in love with horses and she has no fear. She is a dynamic horsewoman, even at only 8 years old. Her feet are firmly planted on the earth and she is a very powerful child. When I look at her Angel, I see that power, but I see compassion too.
"Blaize's Angel" Blaize is turning 14 yr old this early November. She is our athlete. A gifted soccer player.....and a force to be reckoned on the playing field. Blaize bears a quiet glow and the most tender of hearts and is growing into a stunningly beautiful young woman.
"Ava's Angel" Ava is an artist from the depths of her soul. She is our one who hears a different drummer. She is in tune with the song that most of us can't hear...and I love that her Angel is communicating with the bird on her wing.That is so Ava! Ava is 8 years old.
"Aidan's Angel" Aidan.....our oldest grand daughter at 17 years and the one who brought forth this inspiration as she flew by herself to Greece for a month. I told her I would paint her angel everyday that she was gone, and I did...and it turned into a process of painting 7 angels. What a gift to me! "Aidan's Angel" shows her maturity....very strong...very wise....I see her as a protector and a muse. Aidan is interested in becoming a Quantum Physicist. Aidan carries a magnificence that will be exciting to watch unfold.
This will be "Kenley's Angel" #7 and the youngest of our grandchildren, at 3 years old. I paint the background first...which really means throwing on the colors. It's fun and easy because I know the colors will change as it develops and I will just follow it's lead into the spirit and face of "Kenley's Angel."
I feel as if I’ve squandered away the past week. I completely bowed down to the tremendous anxiety and stress that today’s looming PET Scan was causing me. And after all of that fretting, my oncologist and I decided to postpone the scan – as well as my appointment with the transplant team – until next week. I contracted some kind of cold/flu and we do not want to risk a false positive reading on my scan results.
Whether I picked up a germy somewhere or I got myself sick with stress, I came down with a whopping sore throat, chills, feveryness, aches and tremendous fatigue this past weekend. I convinced myself that it was DoomsDay. I worried and worried and worried andworried about all the scenarios:
Conclusion A: I’d never recover from the virus I’d contracted and it would find a way to eat me alive
Conclusion B: Hodgkin’s Disease was flaring on the rise, for sure, so fast that my new immune system would never be able to catch it
Conclusion C: I re-broke my foot, as it was so achey, along with the rest of me. A piece of bone must have dislodged and was floating through me ready to nest in my brain and cause me to hemorrhage (so obvious)
All of these scenarios were evils that I manifested then couldn’t handle comprehending. I completely lost control and surrendered, basically digging myself a grave these past few days. I conceded defeat and moaned and groaned the days away just wishing I could get to today to have my damn PET Scan that would seal my fate. That is not like me, and I hated it.
I could do nothing but pace around the house like an angry troll. I think I may have worn down the floorboards with all of my aimless wandering. I slept more than half the day away counting the hours until Craig came home. I was weepy at everything. I did a lot of “tinkering”: starting projects, moving things around, but ultimately not able to follow through with even the smallest of tasks. I was so tired and so flushed. The idea of even emptying the dishwasher was enough to send me into a tizzy. It is a very good thing that I have a patient, aware, and experienced husband and dog that kept me going.
Overall, I was very sad. I felt so good the week prior and had been so positive about the encouraging strides I was taking that I could not handle the setback. I could not handle the anxiety and the anticipation of what today’s scan would reveal, nor the anxiety surrounding why I wasn’t feeling well. I’d wake Craig up in the middle of the night crying and telling him how kind he was and how much he means to me.
But you know what? I’m not dying right now. I had a cold with a sore throat. A cold. It’s now five days after the symptoms started and my throat doesn’t hurt a bit, my energy level is on the rise, and I’m walking on my foot without any type of cast with only a little swelling, no pain. I no longer feel fevery and my tight chest has opened up again.
Now I’ve learned that even transplant patients get a common cold – and an even more important lesson, we can recover from it with rest and fluids and a little anti-viral Tamiflu prescription just like a regular person. Could this mean that I’m a regular person? I’m so used to hearing incredibly grave news that it’s strange to me to think that being sick could be just that, being sick. Not that the cancer is back. Not that I’m dying.
Since transplant, my confidence has taken a big shot. I get very afraid of a lot of things, an emotion that I am not accustomed to. I’ve always been pretty fearless and even going through much of my initial cancer treatment, I spat in its face. But now, the fear of recurrence is not as easy of a beast to tame. It roars and spits right back at me. If the cancer relapses now, I don’t have many viable options. In the past I always had the autologous transplant in my back pocket. Then I knew that if that failed, I still had the allogeneic transplant card to pull. Now, I’m just dangling on hope that this is forever successful.
I get a stomach cramp from eating too much cheese and I immediately think it’s Graft vs. Host Disease attacking my intestines cell by cell. I cough and I think the lymphoma is gripping my sternum again. I have a gas bubble in my chest and think that my heart is giving out. Obviously, I tend to jump to extremes. But I can’t blame myself, I’ve been living in nothing but extreme conditions for the past two years. I’m not used to these common ailments.
Like Dr. Sauter, I need good data. I need some reassurance that things are looking clean and bright inside. Neither one of us wanted to chance some residual chest cold inflammation showing up that could contaminate my results. PET Scans are finicky enough without the complications of a viral infection. So, I will wait another week. Yes, that means another week of anxiety, but that is far less threatening than mulling over a suspicious hot spot that’s nothing more than my lymphatic system doing what it’s supposed to do: attack viruses.
The scan delay actually alleviates a huge weight. I’m the one who called the clinic yesterday and questioned whether it was wise to get scanned today. My desire to have an accurate scan outweighed my desire to get it over with. I knew Dr. Sauter would agree with my concern. I even got out of traveling to Sloan-Kettering for a visit. Instead, I only had to get bloodwork locally today. My counts look fantastic and all blood types continue to soar into normal range.
I decided when I woke up this morning that I will not let the worry overtake me anymore. Five wasted days is too many days. And maybe they weren’t wasted, maybe I needed that rest and that zombie period to get to where I am today. I suppose bad days are important too; it helps me to realize how good my good days are becoming.
On Halloween I’ll be back to work full-time from home and will be gearing up to start graduate school to pursue my MFA in Creative Nonfiction Writing. These pursuits will no doubt help me refocus my life on what I want it to be and regain my confidence and control. I’m still straddling the gap between patient and survivor and look forward to being able to let go and come to terms with all of this.
It’ll be refreshing to fill my days with meaningful, fulfilling projects and stimulation rather than doctor’s appointments, drugs, needles, and incessant medical logistics. I’ve got to move on with living my life. I can’t just wait around for something bad to happen. It’s damn time for some good things to happen in my life. No more wallowing around: If I don’t stop that gig soon, I’ll make myself certifiably crazy.
I did not go through the trauma that I’ve gone through so that I could shrivel up at the first signs of struggle. Things are a little harder for me these days, but with each new accomplishment, the award is that much sweeter. I just need to rekindle that drive and motivation and not let the fear get the best of me. I know in my heart that I am fully capable of anything I set my mind to, it’s just a matter of taking that first really scary step. This week’s accomplishment? I was sick, and then I got better, and then I went on a fall walk on both feet with my dog.
In the words of my man, Ray:
"Worry ... worry, worry, worry, worry. Worry just will not seem to leave my mind alone/ Trouble ... trouble, trouble, trouble, trouble. Seems like every time I get back on my feet she come knock me down again/ Worry. Oh, worry, worry, worry, worry. Sometimes I swear it feels like this worry is my only friend."
I am obsessed with creating these wall pieces. In a good way. :) I think this is my favorite, so far. I was able to come across some hand written sheet music with the word "Minuet by Beethoven" created for the mandolin.... delicately written on the top. I believe that this paper holds the high vibration, not only of the music but of the intention of the composer. When writing, composing, dwelling in the place of creating music, as with art, I believe one has to be in a place of inspiration and I believe that inspiration is contained and held in this piece of music....I placed this sheet music, along with my French journal pages onto the wood board, and placed images of butterflies over that. The Reiki blessing symbols were added and then hidden under the tempered glass. The shell is a 1/2 Nauitilus shell and the butterfly on it is created with pieces of glass that I found in my treasure stash. The round circles are abalone disks.
"Butterfly Minuet" Available for purchase: $1200.
"Portal Within" I love this one too. I love how her face beckons one to enter a secret realm. I painted a face on canvas and then mounted it on the wooden background. Onto the face I laid a beautiful thick glass disk and around that I placed antique gold metallic lace. The Reiki Blessing is secure under her image and the wood has been painted in beautiful colors of greens and blues and reds and golds and collaged with my handwritten French letters from 1880...all muted with an antique crackle glaze. Abalone shard points surround the face highlighted with Swarovski rhinestones. Available for purchase: $800.
I'm happy to share that one of my art dolls is on the cover of the premiere edition of Doll Artistry Magazine. This is a brand new magazine out of the UK. I'm not sure if it's available in stores or just through order on their website. There's a nice three page article on my work with lots of photos too.
My broken foot is now in an air cast that is worn with a sneaker allowing me more flexibility and more opportunity for sporty activities. Of course I latched onto this news with zeal.
After examining an X-Ray of my foot bone last week, my orthopedic doctor told me that I could start using a stationary bicycle while using the stirrup air cast for support.
“How about a real bike?” I asked him.
“Just don’t fall off,” he replied, warning that sometimes people find that their balance is shaky after being off of one foot for so long.
So I dusted off my bike and tried tooling around the neighborhood. Yes, it was a bit weird at first because my left hip flexors, calf and quad muscles are so far behind my right side developmentally. It felt bizarre, but so gratifying to be able to use my left leg muscles again in a concentrated way.
After passing the neighborhood street test, Craig and I took our bikes to our section of the paved East Coast Greenway trail, just a few minutes from our home. It’s a long stretch of flat walking/biking trails that I greatly missed using. The scenery is beautiful and everyone that we passed gives a warm finger wave from their bike handles or a smile and a nod of their helmeted head. I love it. I love everything about that trial.
My wheel (or was it my joints?) squeaked obnoxiously with every revolution. Both are in need of air, grease, and a tune-up – each of us a little out of practice. Regardless of the squeaky soundtrack, Craig and I had a great time together at a slow pace with a good, steady cadence.
It was liberating and fun and romantic. With Craig there as support providing the spotting, I was able to get my confidence and bike legs back again. Later in the week I went back for a solo trip along the quiet trail. The leaves had just transformed into colors of fiery reds and oranges and the trail offered the unique perspective of cutting right through them. I flew over the dried, yellowed leaves that had fallen and scattered across the path creating that distinctive autumn crunch sound as the bike tires rolled over them. The sun created intricate shadows and patterns amid the tree-lined, farm-lined and marsh land landscapes that I biked past.
At the end of my hour-long ride, I hoisted my bike into the back of my borrowed Jeep on my own and felt sweaty and dirty with foliage flecks and bike chain grease – fantastic.
After missing an entire summer of kayaking opportunities while in the hospital and recovering in Manhattan, we took advantage of the Indian Summer that was this past Columbus Day weekend. So as to not make the adventure too challenging, Craig and I ditched one car down river then did a long 3.5-hour paddle toward it along the picturesque Farmington River. It was near 80 degrees, hot enough for tank tops and shorts. Hot enough for Craig to take an unexpected dip into the murky river water after a not-so-graceful transfer from dock to kayak. We were so concerned about me getting safely into the kayak with my bum foot that neither of us considered that Craig might capsize.
It was quite an ironic situation to watch from my stable kayak vantage point a little down river. I saw him take the confident step from the crew house boat launch onto the kayak floor. The boat tipped a little toward the dock then it continued to roll and I realized he was far beyond the balance point and the kayak was bottom up.
He came up for air from the murk shouting: “Oh, shit!” many times over, while grasping in panic at the water all around him. I fervently glanced around at the contents in my boat and realized that yes, I had our lunches in my dry bag, but his kayak was holding the dry box with our cell phones and car keys. I processed the pieces and realized the origins of the “Oh shits” and understood why he was continually diving the 10 feet down to the river bottom shouting to me: “The keys! The car keys!”
Meanwhile his kayak (with its storage section flipped open: fail!) and paddle were floating past me downstream. He couldn’t leave the spot where he dumped it for fear that he’d never find the keys. So like a gull diving for fish he kept at it with deep breaths and forged through river plants and sludgy mud struggling to keep his eyes open peering through the silty water.
“You’ve got to get my kayak,” he shouted in between river dives.
“I got you babe,” I yelled back. Oh shit. Oh shit. I thought to myself not knowing how I was going to catch up to his boat, flip it over, secure it to my kayak and paddle them both together against the current and back to Craig. I have minimal upper body strength. I would be in big trouble if I fell into the no-doubt bacteria laden water, still full of junk from this summer’s hurricane and river swelling. Swimming in river water isn't exactly on the post-transplant "allowed" list. I also had no use of my left foot, so balancing and maneuvering were made extra difficult.
By some organic miracle I was able to grab the kayak with my paddle and lodge us into a downed branch so that I could tie it up without putting myself any further down river. The tree trunk dam lasted long enough for me to be able to fashion my life jacket into a rope between our kayaks and with Craig’s kayak trailing behind like an awkwardly placed motorcycle side-car, I paddled against the river current toward my husband.
In the meantime after consecutive, exhausting dives, Craig came up with the keys and the dry box with the cell phones, which he dangled at me from afar. Redemption! The only loss was his sunglasses and a bike lock we planned to use to tie up the kayaks at the end of the route – not a bad sacrifice.
With all my might I hauled those kayaks back to the dock where Craig sat soaking wet, river vegetation stuck to his goosebumped skin, eyes red from the sand they were no doubt filled with.
“Don’t worry, I got you babe!” I said again as I pulled up parking his kayak next to him like an expert backing a trailer in, impressed by my own strength and ingenuity in the situation. I couldn’t believe Craig dumped it. More so, I could not believe that he located most of our belongings. He was breathless, coughing up dirty water and swallowing pride – not smiling.
I kept it quiet and cool as he got into his kayak and we floated into the center of the river. When I felt the drama had settled some, I looked at him again and said: “Is it okay to laugh now?”
We both burst out in laughter and then I started in teasing him with corny jokes, which lasted pretty much the entire journey: “Nice day for a swim, eh?”
It was nice to be on the upside of the kayak of life for once. Nobody’s invincible; everybody gets a little off balance sometimes. But when we do, it's nice to know that someone else is there. Once again we proved to each other that we make a pretty good team when shit hits the fan or keys splash the river – or whatever metaphor the day might bring.