How the Story Began.
My daily posts on MyLifeLine during the active treatment for breast cancer served me well.
Now, however, I believe it is time to write the next chapter, in which I return to helping others. Before doing so, I decided to review those posts; what a journey!
Compiled here, in one. long. post, my thoughts and musings as I was feeling discouraged and was encouraged by friends and family near and far. Interestingly, the Nia Technique comes up over and over, as different principles and ideas helped me through various hurdles. I did not add all the amazing replies and comments I received (I have those elsewhere, for my eyes only)— I do intend to navigate away from that site, only entering posts here as my life unfolds…..
August 20th, 2020
This past Monday, the weather was pretty nice, so Mom and I got to take a walk outside together. It had been a while since we've seen each other, and it's likely to be a while again.
We were both processing my planned treatment and getting to the other side, I suppose. One thing Mom said among many, was that somehow I would be helping many people. I have to admit I quickly told her I couldn't even think about that- I couldn't think beyond the coming week, with all its tests and procedures, and of course, the beginning of chemotherapy. I was going to focus on myself!
Well, the next day I got a call from someone who said, "Have you heard of Chemobrain?" Of course, I have. There is a study to determine if a medication used for Alzheimer's can help decrease chemobrain.
Would I be interested in participating in that study? YES! I'll help myself while helping others, which is my favorite form of win-win.
Mom wins.
August 23rd, 2020
Those who know me well know I have an attachment to staying in control of my world. Baby steps into the big change coming allow me the illusion that I am in control of anything!
Me, before any changes.
August 23rd, 2020
Yesterday my friend Lauran went with me to the Gallery of Wigs in Raleigh. I can't stress enough how helpful and compassionate the staff there is.
Lauran watches as I tried on several different wigs, different caps, different shapes, color, style... Who knew there were so many options! In the end, there were three that we agreed were pretty good.
In this time of COVID, it seems that I am really unlikely to go anywhere that a cap or scarf won't suffice during six months on chemo and the several months after— probably no wig for me.
Lauran, I so appreciate your humor throughout!
August 24th, 2020
I am so privileged to have a wonderful husband who likes to make things pretty. He planted roses, gladiolas, and other flowering perennials just in front of our porch. Our porch has a view of a pond inhabited by frogs, turtles, herons, and the occasional otter!
I have a hummingbird feeder just outside my kitchen window, on a post on the porch. Three hummingbirds are always there and come really close to me, waiting, watching. I do believe they are communicating with me.
• Add extra emotional “sweetness” to your life and play. This bird shows up to show you how to “suck” the joy in all areas of your life.
• Express the love you feel to those in your personal circle.
• There is magic in the air brought to you via serendipity and synchronicity. Pay attention to repetitive signs.
• Buy some flowers. Bring the colors of nature into your home or office. The sight and scent of flowers elevate you to a higher frequency.
• When a hummingbird appears near you they are reflecting the positive side of life by showing you the joy in small things. It’s important that you honor the small things in life and let go of the heavy toxic ones.
• Be more present. Be in the moment. Take time for meditation and contemplation outdoors. Give yourself the gift of quietude.
• Your resilience will overcome any obstacles that you are enduring at the moment.
August 27th, 2020
Yesterday was a pretty long day. Greeted at the door by a coworker named Nia (!) Then spend the day in the basement of UNC Hospitals, for three tests. So far the results show no evidence of further hiding cells.
Today is port placement day. Creating the space for all those involved today.
August 30th, 2020
Well, I seem to be surviving my first infusion cycle. I think they have the premedication down to a science. No nausea, no vomiting. Just tired. Today is day three, so I got to give myself a shot to help my bone marrow recover faster. Amazing how even that bit of technology has changed- the syringe manages to pull back the needle, so there’s nothing sharp left, and the whole thing can just go in the garbage can.
Infusion day on Friday was really long; first thing was bloodwork- now it can all be drawn through the port placed on Thursday. Didn’t even need that to get stuck because thoughtfully enough, they left access when the placed the port (which I have no recollection of thanks to a lovely Fentanyl/Versed cocktail)! I was a bit anxious, it being my first time and all, but the technician was outstanding at helping to create ease for me.
Then there was a gap until my first face to face with my medical oncologist. She did a pretty thorough exam, measurements and all. I like her. She’s pregnant with her second, due in November. She has excellent partners to see while she’s out. So, I’ll still be in good hands, like Allstate.
I floated my idea of seeing people, with precautions, before infusion days, and she reminded me that while that is when I would be most immune secure, I would then be entering my most immune vulnerable— so nix on that idea. Seclusion it is, in dry dock.
Then there was another long gap before my infusion appointment. Gene and I wandered, found the labyrinth garden that will be more enjoyable when it is cooler out. There are several places that have tables and chairs for patients and visitors, all well spread apart, each with its own container of hospital grade anti-viral wipes.
So the infusion appointment was for 2:30, didn’t get back there till 4, infusion at 4:30. While I was waiting, I managed to schedule the next three appointments, all to be much earlier in the day to avoid those really long gaps. Self-advocacy # 1.
The first nurse handed me a cup with a bunch of pills to take— no words. I just told her this was my first time and I need some explanation. So she did. All the pre-meds to avoid nausea etc from the poison about to enter my body. Okay.
Then the second nurse took over. She happens to be an L&D nurse who switched over to Infusions due to her own encounter with chemotherapy. Interesting how that works. She was wonderful, calming, distracting, caring. After not too long, it was over and Gene and I finally got to leave at 6 pm.
Long day. I give Gene extra credit for his patience for this incredible, horrible, scary, no good, very long day.
Next time will be easier— no longer an unknown.
September 2nd, 2020
Is it really Wednesday already? Yesterday was a pretty good day- had more energy to be up, walk around, go to Zoom Nia blue belt, listen and learn. Then I pooped out and went to bed really early. Slept till noon today. Guess my body needed it.
Covid and immunosuppression have me worried a bit. Can my son come visit, outside? It would be good for both of us, I'm sure.
September 8th, 2020
Well, it's Tuesday. I only know because yesterday was Labor day which always lands on a Monday. I hope you all had fun, perhaps a walk with family (masks on, of course) a cookout, something. For me, it was a day like any other.
I seem to find myself in moments out of time, marked by bookends of infusion days. My next infusion comes this Friday. I am anticipating the after-effects- especially the exhaustion. In Nia speak, there will be the days where my level three, my most effective exertion is likely to be getting dressed, let alone taking a shower.
Sounds dreary, yet so far I have had at least two amazing occurrences. I have become friends with a woman introduced to me by my mother- the master networker! This woman is also in chemotherapy at the moment, at the same facility, and on the same day. Perhaps we will be lucky enough to actually meet in person this Friday. Having not met yet, she suggested I would know her as the person with the rose between her teeth! I love her sense of humor.
I have another acquaintance who is quickly becoming a close friend; she also is in treatment for breast cancer but lives in Italy. We communicate on Messenger, encourage each other, and provide support from afar. Over time, we get to know each other better and better.
I am so grateful for the technology that allows me to reach out, touch and be touched, by people all over the world, and close to home at the same time!
September 10th, 2020
In Nia we talk a lot about energy- physical, mental, emotional... and how energy circulates, how we can increase our energy, not feel depleted.
Since my last infusion, my physical energy has waxed and waned. Yesterday was an amazing day. I was able to participate in Nia and Moving to Heal classes online, at my level of course. Much was half time, relative to the leader, yet I engaged, was in and with my body.
Today is the day before my next infusion. I chose to use it to invest for my future self- With Gene's help, I cleaned the pottery studio- finally! Now I can begin to play with clay as my energy increases between infusions. I'm looking forward to a creative outlet.
Then I made butternut squash soup, which I hope will tide me over for the first few days when my appetite is suppressed. I know Gene is here and will fully take care of me, yet I so enjoy doing for myself!
Onward.
September 14th, 2020
Friday morning, everyone gets ready to go to work … or for infusion therapy. It’s early. 6:30 am. Erika goes out the door to get in her car, and there’s a baby calf in the driveway.
Erika comes back inside to tell Dad, who’s in the process of waking up himself. She tells him, there’s a baby cow on the front porch. Just so you know.
Gene says, “fine. I’ll take care of it, just go to work.”
Erika goes for a bottle of water, then back out to the car. The calf is now on the steps . Erika goes back to let Dad know, and he says, “I said I’ll take care of it. Fine, let’s see.” He goes to the door, looks out and says, “Oh, there’s a baby cow on the porch. Wait, I need shoes!”
He goes out, picks up the newborn, umbilical cord still attached, and carries it to the fence to rejoin Mom.
Then Gene and I can finish getting ourselves ready to go to UNC for my second infusion. All the cycles of life.
September 15th, 2020
I fully intended to shave my head when this hair loss started, but I am finding value in allowing it to release on it's own. Each day there is a new rug in the shower. Didn't realize how much lush dark hair I still had~ I thought it was more grey.
So day by day, more is released, more air and space around my cranium. I can feel the bones, the sutures. This feels like a metamorphosis, a shedding of the outer layers, the external trappings of how I allow myself to be seen in the world. This is an opportunity to drill down, distill to who I am.
Blue Belt Principle 5, Power of Three: Relationship. I am creating a relationship with my chemotherapy, or at least that's what I intend. I need it to do it's best work on my breast cancer; it needs to show me it's working. One way it does so is in the external trapping of hair loss.
I bring:
• A desire for chemo to find those cancer cells, where ever they are- seek them out.
• Fear that there will be other harmful effects on my system.
• Curiosity about what my body is experiencing.
• Healthy bone marrow.
• Resilience and determination.
Chemo brings:
• Intensity and subtly.
• Death to cancer cells.
• Hair loss, skin changes, GI issues, anemia and immune depletion.
• A longer, healthier life.
• A chance to get in touch with myself.
• An opportunity to examine my priorities.
An interesting way to think about this challenging time.
September 23rd, 2020
In Nia Blue belt, there is a principle that describes the cycles in every Nia class, no matter what the particular format. All classes have 7 cycles, each of which has a purpose and meaning. There is a reason we take time to step in, set a focus and intent, warm up, get moving, cool down, play on the floor, step out … Each of these portions add up to a complete experience, allowing for personal growth, self-advocacy, physical enhancement, pleasure and more.
Expanding on that, I realize that I have cycles in my daily life that enhance my experience: 13 Joint renewal on waking up, tea and breakfast on the porch with the sunrise, journaling, nutritional sustenance, napping, some Nia participation, time with family, sleep.
What if I purposefully add a focus and intent for each day, or even week to create a longer cycle of 7?
Cycles abound:
Days in a month, months in a year, hours in a day, seconds…. Life cycle: birth, toddler, child, adult, crone, death.
The seasons: there's the beginning of new life and growth in the spring, full throttle living in summer, a pulling back in autumn, and hibernation and rest in winter.
I recognize cycle of chemotherapy as well:
Cycle 1: Infusion day, along with creating the space for the infusion.
Cycle 2: the honeymoon period, when I feel fine, eat well, can move.
Cycle 3: doing it's work, when I'm down for the count.
Cycle 4: recovery, when I begin to feel lighter, become aware of more than my body.
Cycle 5: restoration, when I can interact with others ~ even if only virtually~ and take care of myself again.
Repeat.
Having survived two chemotherapy cycles, I see that this is truly a cycle with variable lengths and depths in each cycle. While these feel like truth, it is also true that having experienced the first, the second was new and different, with different sensations in my body, mind, emotions, and spirit.
Now I am facing the third infusion, and yet again, I am in a new place in each of those realms; I am in beginner's mind, with new knowledge, a reset, if you will, a new preparation to allow these cycles to flow one into the next. Taking the suggestions my good friend Debbie Rosas shared to heart, I am setting myself up for ease: surrounding myself with colorful flowers, visual beauty, preparing playlists of music that is uplifting to me, placing bowls of water strategically to allow resonance, making sure there is healthy food for my body and soul for the duration of Cycles 3 and 4.
Talk soon.
September 26th, 2020
My resilient, confident, compassionate family.
I am so proud and elated that you are doing as I hoped and dreamed: you are there for each other and in fact, we are all "there" for each other!
All three of you stepped up last week when both Gene and I were unable to do for ourselves; you did for us. Thank you! Last night when one of you had a flat tire, the other stepped in to help!
Truly, I am so proud.
May you will be written in the book of life for the next year! Had to say it, it is Yom Kippur eve, after all!
October 7th, 2020
It's Wednesday…. This is tough write as well as week!
Thursday, 7 days post infusion, I felt pretty good. Joined Brown Belt online with Debbie Rosas, even joined and contributed to the discussion in my POD group of trainers-in-training.
Friday morning I was hit by a Mack truck. Nausea. Vomited. Couldn't eat or drink much for 4 days. Got dehydrated. Lost 5 pounds. Miserable.
And yet...
This morning in brown belt pod, I had a revelation: The lesson on Thursday was BrB P4, mental energy, all about constructing life. Using the image a pearl between the hemispheres of the brain allows connection to the “all that is”-- everything beyond ourselves and this moment.
So, on those days where the chemotherapy is ravaging my physical body, and I can't get out of bed, my mind can and does connect outside to the birds and squirrels and the trees whose leaves are changing color, and even to my future self in the next week, feeling better and able to be with and move.
While I find this helpful for survival, apparently others find this inspirational.
October 11th, 2020
On Friday, not having been anywhere besides my three acres of sanctuary and the hospital for 40+ days, I really needed a change of scenery, vista, sound, taste. So, Gene took me to Wrightsville Beach for the day.
I knew it was going to be cloudy and cool but really wanted to hear the ocean, see the big expansive vista, feel the sand under my feet. I had a vision of walking a bit on the beach, soaking it in. We would have lunch at the Oceanic Restaurant, a favorite of mine.
On arrival, after our 2.5-hour drive, we found a parking place easily, paid by phone. Isn't technology splendid?
Got our chairs, walked to the beach. Found a spot away from others and planted ourselves. The wild surf, and the wind-song, found our ears. Surfers were out, catching a few good runs- fun to watch as they melted off their boards and back into the ocean. Peaceful, serene.
However, it was cold. Gene was the first to cover up with a beach towel. I held off for a bit longer, but in the end, did succumb to the cold as well.
Finally, we decided on an alternate plan, as it really was not as pleasant as I had hoped. Off we went to the Oceanic for a late lunch. We shared a tuna poke bowl and calamari, and each had a cup of soup- I had she-crab soup, and Gene had gumbo. Delicious and enjoyable with tables far apart for safety.
After lunch, we went to downtown Wilmington to window shop and we did wander into some artsy stores for new visuals. Sarah's birthday is coming up soon (24!!) so that gave us an excuse to look. Not that we found anything suitable.
After a view at the Riverwalk and a gelato (honey and mint chocolate chip), I had finally reached my third enough (thank you, Nia, for allowing me to invest for my coming week) and we found our way back to the car for the long drive home. We had been out for 12 hours!!! Gene and I both slept well, deeply and long, that night.
Two days later, I am tired, feeling a bit jittery, but well. I feel rejuvenated after the views, and ever so grateful that we have the means to take off like that on occasion. It won't happen again until all the remaining infusions are completed, as I step into weekly treatments.
The risk of infection is greater than my need to wander.
October 18th, 2020
Indigent peoples have long connected to animals and other elements of the natural world, and I believe there may be some insights for us other humans as we really need to connect to and help steward our earth. Perhaps this can help us heal the rifts that have really escalated in the past four years.
In my current view, healing and medicine really encompass anything one can do that results in feeling better: physically, emotionally, or even in that unique spirit that paves the way for each of us. This time of double isolation (COVID plus immunosuppression) allows me extra time and space to explore these alternative ideologies that I have not had the pleasure of being in relationship with. A less obvious perk of my cancer experience.
We live in the rural edge of Chapel Hill, and lots of animals show up. I'm exploring the indigenous take, and perhaps shamanic thoughts about what each might bring. So, let's see what happens if I call on the Animal Medicine of each of these. What are the gifts, insights I might receive? (from Medicine Cards, Jamie Sams & David Carson,, ISBN-13:978-0-312-20491-4)
In no particular order:
Deer: Gentleness
White-tail deer graze in the pasture, bed down in the tall grass around the pond, look and see when they hear our door open, watch to see if one of our dogs will come close and then take off across the pasture.
Through legend and allegory, the story is told of a deer who approached a demon guarding the Great Spirit, asking to be allowed to pass. The Demon of course said no. Using the power of love and compassion, the deer was not afraid nor intimidated and with time the demon's power decreased, his heart melted, and his size shrank. Now all creatures can go to the Great Spirit.
So, the lesson: treat all with kindness, compassion, and love. All beings are wounded in some way so allow others to be who/as they are, and stop trying to push them to change. Be willing to find things to love about yourself and your inner demons will melt away.
It is impossible to hold onto love and fear at the same time.
Coyote: the trickster
Coyote occasionally come through the pasture during the day, but mostly I hear them at night barking and calling to each other on the hunt. Many years ago when we lived in Knoxville, one of our dogs, Pepper, saved me and our young son Jon from a coyote. We thought he was completely scared away, yet, in the morning, he had tricked us, and was sitting on the steps to the back door!
Refines the act of self-sabotage to perfection, with grace and ease. Coyote takes himself so seriously, that he can't see what's coming- the big boulder rolling down the mountain, for example. Also the great joker, have a laugh.
Coyote medicine asks you to look beneath the surface of what you're doing- do you really know why? Are you tricking someone or is someone tricking you? When was the last time you did something purely for fun? Be aware of potentially being misled, perhaps by a politician, partner, advisor…
Find ways to laugh at yourself, do not take things so seriously, as laughter is the best medicine.
Squirrel: Gatherer
Squirrels play with Cassie, teasing her as she wants to tell them off. They also click, chatter, and cut limbs in their hunt for nuts. They bury and hide for the future.
Plan ahead! Gather and store your energy for a time of need, reserve something for the future when you might need it. This could be a judgment, food, candles, money, food.
Each of us needs to prepare for the future, especially as there is so much unknown. Using love, gather what serves you without going "nuts" about it! Honor your future by preparing for change; this could be to lighten your load by releasing thoughts, ideas, worries, clutter-- anything that no longer serves you.
Circulate any tangible material items that no longer serve you to others. Donate the clothes and other things that no longer give you joy and pleasure. Allow them to please someone else. To release your worries, know that all will be taken care of in its own time.
Hummingbirds: Joy
Hummingbirds showed up in droves all summer. While I sat on the porch, drinking my tea, they buzzed, squeaked, vibrated closer and closer, often hovering less than two feet from me.
Hummingbirds can fly in any direction, solving the riddle of duality. They sing a vibration of pure joy, bringing life and reproduction to flowers. Life is a wonderland of delight to the hummingbird-- darting from one beautiful flower to another, tasting essences and radiating color.
With hummingbird medicine, you bring joy to others and love life. You know where beauty abides and move comfortably, helping others taste the beauty of life.
Hummingbird energy asks you to drop discord and judgmental attitudes. Speak to your heart, and open it to the Joys of life.
Moles: dig deep
Moles run rampant, crisscrossing the yard creating tunnels and connection every which way.
Here is a beautiful Sioux legend which says a lot about the spirit of the Mole.
The Creator laughed, and replied in an instant: “It is done.”
(https://spreadaloha.net/2018/08/25/spirit-animal-oracle-the-mole-introspection/)
Well, that really speaks to me! Look inside yourself for the answers- get to know yourself and then, then, you can effect changes.
Chickens: Illumination
Chickens of course, are corralled and fenced into their scratching yard. They forage, create their pecking order, and yet come running when a person comes close.
Chickens are a sign of illumination-- it's all about the power of YOUR voice and the uniqueness that is you! Listen to that inner voice that tells you what you need- trust your intuition! Become involved in your community, lend a hand whenever you can. You have the gift of discernment, yet need to learn how to use it.
Hawk: Messenger
Hawks fly and light in the trees around us, searching.
The hawk teaches you to be aware, be observant, look around you. Have you lost the broadview? Can you see the forest or just the trees? Have you restricted your sight? Have some things become too painful to acknowledge? Be aware of your emotional state, and don't let your emotions cloud your judgment.
October 23rd, 2020
Well, yesterday way Taxol infusion 1/12. Another really long day, starting with the port access/bloodwork. Got teary right away. Teary all day! Finally, I think it hit me why-- I have not recovered from the last infusion yet, and there I was, receiving another. Self-pity, fatigue, exhaustion, don't know what to expect this time.
And it's fine to feel what I feel, and express it! Let it travel on through.
In any case, there was a lot of waiting time; Gretchen was really backed up so Emily did my virtual visit. Over an hour late. Then, the infusion was also over two hours late. So the day ended up being 9-4. Long day.
My last entry was all about spirit animals and totems. I have two more I want to explore, although in reality there are many more that come by and could be explored.
Heron: stillness, tranquility
There is a Grey Heron pair that frequents the pond I see from my porch and window. I believe they roost in the trees in the pasture next door. I believe this is a mating pair.
The Heron reflects agility, resourcefulness, stillness, and tranquility. You make things happen even if you have little to work with if you are able to be still enough to recognize opportunities. This speaks to independence. Solitude is good, and one can learn a lot by being alone, however, you can't do everything by yourself, so open up to others sometimes. Value the art of being patient- actively taking opportunities as they come. Learn to balance emotions during times of struggle.
Bull: fertility, yang energy
Boomer, the young bull can't stay out of our yard. He shows up daily, eating, watching, waiting. He seems to really love the weeds that Gene doesn't mow on the side of the house. Cassie is intimidated by him, Lucy is the opposite.
So, the lessons from the bull: fertility! This could be through nutrition or making the ordinary parts of life more fertile. Perhaps one needs more protein?
The bull is a male totem and is associated with the sun and yang energy. Sometimes, the bull is referred to as lunar; the horns can look like crescent moons, so there's an opportunity to share both male and female traits. Is there a need to be more sensitive to the conditions and people around you? Are you trying to rush something that should be allowed natural time? Are you being stubborn or rigid in your thinking?
Now, to put it all together, each animal had a message:
Agility, resourcefulness, stillness, the fertility of thoughts, sensitivity to others, awareness of my emotional state, plan ahead, gather my energy, release my worries, treat all with kindness, compassion and love, watch out for self-sabotage, laughter is the best medicine.
For me, this reminds me to take a deeper look at what I may be worrying about, to be aware of what I am feeling, and how I express myself, as I do affect others around me. Gathering my energy, allowing rest when my body calls for it is an important part of planning ahead at this moment in my life. I need to be aware of self-sabotaging behaviors as they may creep in, remember that laughter is the best medicine, and treat all with kindness, compassion, and love, as every person is important in and of themselves.
October 31st, 2020
Clearly, to me at least, Taxol is not as taxing on my body as the adriamycin/doxorubicin combination-pun intended. Clearly, this is true in the eyes of the oncology department, as I don't meet virtually or in real-time with a medical provider before each infusion. And yet …
GI symptoms and fatigue abound.
Pre-meds for the infusion include a huge dose of steroids, Pepcid, and Benadryl. The steroids seem to carry me for a day plus. Then the lag begins. I droop. My heart rate increases to the cardiac zone with a slow walk to the mailbox. Still, wanting to see something different, I asked Gene to take me to the old speedway in Hillsborough for a walk on Tuesday. Pretty flat terrain, so I thought it would be not too strenuous, and I was feeling pretty good. There might be some people and dogs, but most would be masked, and I could hold my breath as we passed by, if need be.
So, we went.
It was a beautiful day, not hot, not cold. Sunny and breezy. The sky and light filtered by the leaves (not as colorful as I had hoped) were dappled, and just beautiful. A third of the way around, I needed to sit. Fortunately, there was a well-placed bench. We sat, listened to the breeze in the leaves, watched some flutter to the ground, while my heart rate came back down, and my breathing slowed. Moving on, slowly, we continued around the track, eventually making it back to the entrance, where, fortunately, there was yet another bench waiting for me. We sat, again listening to the susurrant wind so I could gather my energy for the walk back to the parking lot.
In all, we walked 1.5 miles that day, taking an hour and a half to do so. I kept thinking about how in the past, when we have walked that trail, I would end up ahead of Gene, feeling held back by his slow pace; this time, the roles were reversed. In the car, and then at home, it was time for a nap. Cassie, Erika's dog, was of course happy to accompany me.
On Thursday I had my second Taxol infusion, and the labs before hand showed that I am a little anemic. Before all this, I functioned pretty well with a hemoglobin of about 15; now it's in the 9's so quite a deficit for my body. I have to keep that in mind when I desire to do more than my body is currently capable of sustaining. I can't physically keep up, and I need to find "okay with that." I join Nia classes, workshops, and trainings on Zoom, and primarily use my avatar to move my energy body so my physical body can recuperate. Dressed in purple and teal, with swirls of yellow, she is evolving, plugging into Nada Brahma, the vibration and sound of herself and the world around her, listening to the susurration of her heartbeat and breath.
November 8th, 2020
The major side effect I am seeing from Taxol is bone marrow suppression. My last Hb was 8- borderline for transfusion. With my normal being 15, I am noticing being winded, resting heart rate up, headachy, and cold, so cold. While I would prefer to not go in a second time and certainly not to the ER, and my choice would be to have a transfusion along with my infusion on Thursday when I'll be there already, if I were my patient, I would be suggesting a phone call today to talk about it.
So, I just got off the phone with the on-call doctor; what I do really depends on the trajectory of my symptoms. I really don't want to go to the ER, so I either wait till Thursday, in which case there's the possibility of needing to be in bed, recumbent for several days, with more symptoms, or I go in early, Monday if possible, Tuesday if need be for a transfusion.
It's tough being a doctor/patient; I believe the best course of action is to go in a second time this week-preferably on Monday-- for a transfusion. If I don't, I will certainly not be able to move at all in Kelle Rae's MoveIT(tm) class on Tuesday; it's doubtful I'll move much anyway, but I should feel better. There's no reason to be a martyr and miserable for any number of days, as blood transfusion is unavoidable.
What would you do?
November 10th, 2020
Well, one day post-transfusion, it was an incredibly long day, but so worth it!! including all the potential risks. I feel so much better, I am astounded. My resting heart rate is closer to my normal, I don't need a hand on a wall or counter to navigate my home, I can catch my breath.
Thanks for dancing with this decision with me- it was indeed a hard one. All the potential risks of transfusion- as many times as I have donated blood and platelets, to be on the receiving end is a very different experience. As is being on the patient side of ALL of this!!
In other news, I am so grateful to Shasheret and the Marlene Myerson JCC for offering Zentange workshops to anyone dancing with cancer recovery at any stage; it has sparked creativity for me in a way that I have sorely needed. Pictures to come.
November 16th, 2020
Have I mentioned Nia? The Marlene Meyerson JCC in Manhattan? Sharsheret? Zentangle? Nia?
Tonight I will be a guest of the JCC, invited by my friend and colleague, Caroline Kohles, and will co-lead one Nia dance as a mindful affirmation of what my healing body CAN do. Of what any body can do while healing from any illness or injury. Nia is all about finding vitality, comfort, and pleasure in what a body can do at any moment in time. Intrigued?
Join us at 6 pm EST: Join us this Monday November 16th for the Marlene Meyerson JCC Manhattan's Broadway’s Best for Breast Cancer, a free, health and wellness offering! Hamilton star Mandy Gonzalez and JCC senior director of health and wellness Caroline Kohles will talk with some of Broadway's brightest stars and health experts about coping with cancer amid #COVID19 and a Q+A. RSVP in advance here: https://mmjccm.org/programs/broadways-best-breast-can-cer-staying-healthy-strong-during-covid-online
November 18th, 2020
A couple of days post leading a Nia song online.
It was indeed a pleasure to share a little of myself with Caroline, Mandy, Natria, and all who were in attendance. Finding my ability to play with imagination -- fireflies, confetti-- while turning "exercise" into playful movement is life-affirming for me. Cancer does not stop me from playing!
Tomorrow is another day, another infusion.
November 25th, 2020
Today is a wonderful day for me to practice the art of being in RAW— relaxed body, alert mind, waiting spirit. I just had my labs drawn and am now waiting for the results and my infusion. This afternoon I am scheduled for a port study, as Polly Port likes to be persnickety each week. She wants lots of attention before she gives back.
The ability to sit with it, without attachment to the outcome of my day serves me well; keeps me from anxiety, self-pity, or getting angry or depressed.
I am grateful for this tool.
November 26th, 2020
Staying in RAW, with Beginner's mind, no expectation of outcome served me well yesterday. My labs were great, Polly Port cooperated fully, so no need for any kind of revision.
I feel so grateful.
I wish you all a happy thanksgiving, celebrated within each bubble, evidence of care and compassion for the larger bubbles in the world.
The best is yet to come.
December 1st, 2020
Still with RUQ aching, bloating, abdominal discomfort, feeling like my stomach is not emptying. Subsisting on soup and toast. While I didn't feel great, I did have a nice long time just being and watching Netflix with Sarah. Wonderful.
This week will be 7/12 Taxol infusions. I am over the top of the mountain and on the downhill side. When I have been on trails in the mountains, there have been times when the downhill trek is harder than the uphill.
Food for thought.
Mom asked if I thought the worst would be behind me when the chemotherapy is finished- she seems to think that’s the case; I hope she is correct, although I don't know! I have never had a mastectomy, let alone a double one with removal of lymph nodes, and then radiation therapy. While I know what surgical recovery in general entails, I have no real idea of what to expect. Still, there is a glimmer of light at the end of this tunnel.
Needing something to look forward to, I am dreaming, visioning, planning a trip to Scotland. I've never been there. I hope to go at the end of October 2021; with luck, all will go well with my treatments, there will be an effective COVID-19 vaccine, and I will be well enough to travel by then.
In the meantime, I do my best to listen to my abdominal discomfort- what is it trying to tell me? I engage in Nia as much as possible, I doodle, I explore in clay, attempt to write, explore my longer-term goals…..
Love and acceptance are the tools for today.
December 3rd, 2020
When I was a little girl, I was often called Annie, a term of endearment. As I grew up, that changed to Anne most of the time. MY family and my closest friends still called me Annie, which I interpreted as signifying real love for me.
In middle school, some kids gave me the name "Annebulance" some sort of nod to my desire to be a doctor, or maybe I had a loud laugh; I choose to believe it was the first.
I, on the other hand, for a short time, wished my name was "Annabelle" as I was really into romance novels, and thought that name was romantic.
I believe names play a role in who we think we are, and how we relate to ourselves, others, and the universe. Nia Blue Belt is all about the art of communication: listening to and communicating with others, be they of flesh and bone, or what we humans term inanimate.
For that reason, I have given my access port a name. Not a straight forward task, to be sure. Initially, I thought Penelope Port would encompass her personality; she became irritable and persnickety, choosing to withhold my blood when the nurses asked for it. I have since changed her name to Penny Port, and she freely delivers what she can, generously, without having to be coaxed. It seems to me she likes the name and perhaps that I thank her for her contribution to my healing process.
Some of you (Mom?) may find this irrational, sentimental, woo-woo; for me, whatever works and helps me cope, play, do what I can to keep my sense of humor is paramount.
So think about it: What’s your name? Do you like it? Do you have a nickname? Would you prefer to be called something else? Would you still be you if your name was different? Is there something in your life that could benefit from naming and creating a relationship with?
December 14th, 2020
Today is Monday the 14th. Taxol number 8 is behind me. My body knows it. So, still can't do much physical activity.
Wait! What a negative approach to what's happening in my now body; that leads me to consider the opposite.
I have so much to be grateful for! On the surface, I have a pretty amazing partner in life, my husband who is really going out of his way to ease my life. He made a big pot of chicken soup, the way I like it. He's doing almost all of the laundry and cleaning, although I may choose to dust the house today….
I have kids who prefer to live at home with me, even if it means their boyfriends can't come over-- for more than a year!
I have everything I really need, right here, at my fingertips. I have a decent internet connection, so I can be part of online education, video chats, movement classes… I can shop online, although I do miss touching items before I buy.
Going deeper I realize how privileged I am in other ways; I have had the option to receive an advanced degree and a profession in which I could not only help many people but earn a very good income, save much money so that I now don't have to worry about paying for housing, food, clothes…let alone luxuries.
In truth, I worked really hard to earn that degree and worked difficult, long hours for my income. Yet without the foresight and planning of my parents, I might not have been able to afford the cost of the education needed. I had wonderful advisors along the way who helped make sure I had the best insurance coverage I could afford; that's my financial safety net now.
Open enrollment for healthcare insurance ends tomorrow; through the healthcare market place I had three plans to choose from, and the decision-making process was quite challenging for me.
After many tries, I finally was able to talk with someone at the insurance company to compare the plans. Turns out the only real difference is in how the costs are shared with the policyholder-- the allowed services are the same. The young lady I talked with shared with me that if the three options were her choices, she would have to choose the one that could cost the most at the end of the year (of course she not as likely to reach her deductible as I am).
If I had less of a financial safety net, tighter cash flow on a monthly basis, the decision would have been easier- I would have to base my decision on what I could dole out monthly. I will be a "heavy user" of medical services in 2021; if I expected to be a light user, my decision would be different because I might not even reach the deductible. The real problem is that would be the option that would cost me the most at the end of the year, such as is the case for the young woman who helped me on the phone, taking into account the monthly premiums, deductible, total OOP, etc, as I will definitely reach the deductible.
So, since I have a safety net and can afford to pay larger initial amounts to a healthcare provider, I will pay less in the end, than someone who really needs to only pay small amounts out to a provider for an office visit. This is backward, somehow.
I am grateful to my parents (and brothers) for their foresight, encouragement, advice in all arenas. I am grateful for the financial advisers in my life, and that I had the discernment to follow appropriate advice. I am grateful for the degree of activity I can do. For the rest-time I accept for myself. For my Nia community who continue to support me with classes, activity, engagement, discussion, love, and compassion.
December 23rd, 2020
Last week, I started having some tingling in my forearms and lower legs, which really only lasted about a day. Since my last infusion (Friday), I have had more pins and needles in my hands and feet, hands and feet so cold, the right side of my body and especially the ulnar distribution in my forearm and hand are numb.
Feels weird.
Today is Wednesday and it's still not gone; next infusion is tomorrow. Yesterday I sent a message to my nurse practitioner. My nurse navigator called me back and asked for more info; there will be a dose reduction for the remainder of the treatments.
Mom calls me almost daily, and she's so upbeat. She asks each time what I'm doing that day; I always have the same answer: music, some minimal Nia, TV, reading, art. I wish I could reassure her that I feel good, but I don't and I can't lie, hiding how I feel; she'd see right through me.
This neuropathy gives me a window into what people with CRPS endure. Constant irritation, feeling on edge, tenderness to the touch of air and sheets. Disconcerting.
Then I think about the usage of the idiom "on pins and needles". Apparently, this implies a state of tense or anxious anticipation.
An apt description of my current state.
I am in a state of metaphorical pins and needles, somewhat anxiously anticipating the last chemotherapy infusion scheduled for January 7, 2021 (what else will 2021 bring?) and the subsequent reevaluation of my medical status the next day-- even as I realize any anxiety only gets translated by my nervous system as a threat. Not helpful.
What tools can I use to decrease the tension for myself?
• Listen to music: fortunately, I have a wonderful new playlist to listen to from the Nia technique and Spotify is full of wonderful music for me.
• Dance to the music: in my body's way with whatever way my body chooses. I can use my emotions to allow the release of fear, anxiety, tension, and even shift to calm, grounded, welcoming….
• I can doodle, create on paper with ink and graphite, any other colors I can find in my house (there are many) creating Life as art.
• I can choose to share what I am feeling with my family and my friends-- that means you!
• I can support others who choose to share with me what they are experiencing. I have two people inparticular in mind who are dancing with this breast cancer thing at the same time as me. I am here for them as well as they are here for me.
• Keep choosing love and acceptance, letting go of the need to be in control even as I self-advocate.
Self-advocacy; a theme for another day.
I wish you all a wonderful Christmas, however you are able to celebrate with your loved ones near and far,in the same room, or outside (weather permitting) or over Zoom.
January 11th, 2021
Well, since I last wrote, I have completed my infusions, all 12 Taxol infusions with dose reductions. Whew! Truly feels like a hurdle overcome.
While I continue to have neuropathy, other side effects seem to be less intrusive. My stomach is not as irritated, and I was given a "stronger" steroid cream for the skin rash.
On Friday, I had a repeat mammogram which showed-- YAY!-- reduction is size of my cancer. Later today I'll have a repeat MRI to define where I am further, and on Wednesday I meet with the surgeon to outline the approach and timeline.
In the meantime, I continue my metamorphosis from my current imaginal state to the emergent new me. Who and how will I be? How do I want the rest of my life to look? Can I even orchestrate that or is it, like so much of my past, out of my hands, reliant on my responses in each moment to the sentinel events that occur in my life's journey?
How did I get where I am currently, anyway?
Food for thought.
January 21st, 2021
Inauguration Day!
This is the first inauguration that I am choosing to have the TV on for all the pomp and circumstance. Gene is off to play golf, so I have free rein to watch as I choose. I am so moved by Amanda Gorman's words and presence-”Join me as I resolve to let my light continue to shine.”
In other news, I am slowly recovering, and I mean slowly. My legs and arms ache all the time, my feet swell with 1-2 pitting edema by the end of the day. My fingers are numb at the tips, and my feet, especially the right, are numb in the forefoot- I lose my balance on a regular basis. My hope and assumption is that I will regain much of my strength and stamina before surgery on February 9; I know recovery from that will be slow and I am afraid to lose even more.
I am registered for White Belt with Dorit on Saturday afternoons, Blue Belt with Kelle on Sunday afternoon; I take M2H with Marybeth on Mondays, Alexander technique on Wednesday evenings, Brain health Tuesday evenings, Zentangle Friday midday, Evolution (only 7 weeks) with Debbie on Friday afternoon…..
Really pretty busy, although it's all in my own home, and no one is live and in person. Most of these online activities are sedentary for me, while there is movement, some of which I get up for and some which I do seated. I really am doing my best to listen to my body and do as it asks.
Thursday is a day off- perhaps it's the day to play with listening to music. However, that means mostly sitting and barring, listening in stillness, seduced by the music, with my feet down, ready to swell.
I need ideas on how to minimize that.
February 8th, 2021
I had a conversation yesterday with Sadie and Arlene, friends in my Nia Evolution Pod, about the difference between yielding and letting go. Perhaps just a semantic difference yet for me the first has a more yin quality of acceptance and perhaps even passivity, while the latter requires a more active stance, including a decision to let go. Taking ownership of the choice to hold on or not. More yang, if you will.
I am in the continuation of letting go. I have done everything I can to be prepared for what comes next, letting go of the illusion that I have total control of the outcome; I will be yielding to my surgeon’s hands, and then the care of the nursing staff. I trust I have made the best decision and choices and all will be well in the end.
That brings to mind more recent thoughts and ruminations; I attended an online seminar about positive psychology recently (a benefit of all this extended Zoom time) and took the time to do a strengths assessment. While I have yet to think more about the validity of each, my top strengths really do resonate and serve me well, especially in my current circumstances: hope, judgement, honesty, forgiveness. Clearly having hope for the future helps me know that the torture of treatment is worth it! Judgement (as opposed to being judgmental) has helped me evaluate my options to discern the best course of treatment without having to be absolutely right. I will forgive myself if something happens, and things don't go as planned. I also forgive others for following their own hearts and making decisions for themselves, even if they differ from what I think best-- for who am I to say? I speak my truth, and am who I am, without artifice. I do my best to be kind, and truthful. And then I circle back to forgiveness, when I cause hurt.
I have been recovering my strength well over the past three weeks, able to do and enjoy more movement medicine in Nia classes across the country and across the pond. Today I had class in Santa Fe with Sarah Nickerson. It was a wonderful, grounding, centering experience for me especially with the Jazz music playlist she chose. Thanks Sarah!
Tomorrow I am scheduled for surgery; I am not afraid, not anxious (at least not yet); at the moment, I am approaching this with curiosity- what will it be like in this particular ambulatory care setting? I'll be staying overnight; I have never stayed in an outpatient facility overnight before; I wonder what that will be like? What will it be like to have drains in place? That's new for me. What will it be like to have my young adult daughter be my primary caregiver overnight? New yet again. What will it be like to have the restriction of no typing until the drains are out?
All the best to you, all thoughts appreciated. See you on the other side.
February 10th, 2021
From Erika: Mom is home and resting. She came home to flowers and food made by Sarah! She’s doing great. Already asking to watch a movie together later this afternoon!
February 26th, 2021
The Jewish holiday of Purim just passed this weekend. In a typical year, Jewish people all over the world, religious or not, make hamentashen (or at least I do), triangular shaped cookies to share, dress up in silly costumes to emulate Esther, play games, some drink to excess (Smiley face here!) or otherwise act out. And they are supposed to! Not this year and we all know why.
" For almost a year, many Jews remained in hiding. They avoided public events. They feared for their safety. They were vulnerable. Their future was precarious.
Living with a cancer diagnosis is scary. Many women report feeling vulnerable. Many fear for their unknown future. Life feels precarious. And if that wasn’t enough…. Covid-19 happened. For over a year, we have been hunkered down in our homes, avoiding public events, and protecting our well-being. We are waiting for that decree from the government that will declare our freedom and safety. What could our lives look like following this unimaginable time in our lives?
It’s hard to imagine what our world will look like post a cancer diagnosis or Covid. Yet the story of Purim can serve as a guide on how to navigate uncharted waters, believe in our inner strength and hold on to hope that we can transform our future. Take action when we see we can make a difference. Think of others who are equally vulnerable because we’re stronger together. Never lose hope. Remember to feast, embrace Joy, and if it helps, wear a great costume (mask) that will lift your spirits."
The above is excerpted from Sharsheret, an organization which supports women of all backgrounds dealing with breast and/or ovarian cancer with free programming.
For me, the idea of guidance on how to navigate the uncharted waters feels like white water rafting: the water is moving fast, and there are boulders out there- some seen but the majority under the surface. I have to believe in my inner strength to ride the currents and hold onto hope. It seems that each segment of my journey presents a new boulder that tests my resolve and self-assurance. Currently I am recovering from my surgery more slowly than I would like, and have decisions to make about long-term medications, although reality is that those don't need to be made for two more months- until after radiation.
In the meantime, I am grateful that the sun just emerged, and the day is warmer. I think I will ask my husband to take me for a walk. I am so grateful he is staying positive for me.
Love to you all...
March 22nd, 2021
I woke to a gloomy Tuesday morning last week, with Cassie curled up at my feet. One of my extra pillows, usually under an arm for support was on top of me. I was floating in my little cocoon. I did not want to get up. Slowly, I twirled my left ankle, flexed and extended that knee, opened and closed my hip, circled my left wrist, extended and flexed my arm, moved my shoulder, undulated my spine, and did the opposite on the right side. Finally a cat-like stretch. Scratched Cassie for a bit, and finally got up. Gene had heated a mug for me, adding an extra something to my first cup of coffee. I realize just how lucky I am that I have a partner in my life who is there for me, and takes the time to do those little extra things like warming up my cup!
This week, I am at Wrightsville Beach, by myself. The focus is on me, and the intent is to regroup, emotionally and spiritually so that I am ready for radiation therapy to begin next Monday. For some that may seem bizarre, to want to be alone, away from those who love me intensely, yet I really am an introvert, I need my alone time- to think, to decide where and what I do in the moment, without the need to really consider what someone else might want.
This year has been especially hard for me; having to be dependent on someone else for everything; if I wanted a cup of coffee or needed a plate, someone else had to get it for me. Then if I needed something else, I felt I couldn't ask, as the other was already doing so much for me. Okay, I think you get the idea.
In any case, here I am, listening to the waves crash. It's been raining, so I choose not to walk, but to listen. This brings me to peace. The vastness of the ocean, the horizon in the distance, helps me put my issues inperspective: it could be worse!
A Room With a View.
This is the view from my top floor balcony. Sunrise each morning on the East Coast.
March 28th, 2021
So I am home from the beach, grateful to have had that time. I truly enjoyed being alone, able to walk on the beach when I chose, eat when I chose (although I ate WAY too much crap!), read, move, listen to music, watch what I wanted when ever… And yet.. I am grateful to be home, see Gene, spend some time with Erika, and Sarah, and the pups. I did not want to come home though. I really do not want to start RT tomorrow, although I know I have to and will. I cried on the beach before I left… and created a kata: “A” Stance, I am courageous (fists on hips) I have hope (hands over heart) I am strong (hands in ready) I am resilient (position pending- maybe reaching up and out).
When I got home, I told Gene how I'm feeling about all this; how I don't want to go for 6 weeks, Monday through Friday for radiation but will; how I am beginning to realize that I will never be free of thoughts about cancer; even after this next step is completed, it's still not over. I will need suppressive meds essentially for life, so the thoughts, my truth of living with cancer will always be with me, even if I am not yet living with metastatic cancer, as we see on TV all the time these days. Now I realize as well that this is a choice-- I can choose not to do the radiation, not to take further suppressive meds, and I can choose that at any time. However, that won't change the thought that breast cancer will always be with me and might return.
Naturally, I did get my text re Covid Vaccine for last Thursday, while I was at the beach- I had to decline. Hopefully I'll get a second chance quickly.
Last night was Erev Passover… we ate shrimp!
Today we had mom over, and Gene made rotisserie chicken for me; Sarah made green beans, deviled eggs, and fruit salad. And of course matzoh ball soup! My nod to Passover-- I wish for us that we shall all be passed over for bad or worsening health!
Okay, I suppose I am as ready as I'll ever be for radiation to start tomorrow.
April 9th, 2021
Well, here I am.
Two weeks into radiation therapy. Four to go. The first day was no treatment but simulation, to make sure the fields were correct and every thing was aligned properly. I admit I cried through it all. The team of technicians was so compassionate that I felt safe, even in my fear and grief. I even asked for an appointment with a cancer grief counselor since I could not stop crying.
Now, I have had 9 treatments, that last only 5 minutes each. Amazing. I see the same masked faces each time, so I am creating relationships, even in this altered universe. The parking lot attendant knows me already, and I feel a connection to her. She told me about her son who died two years ago.
The gentleman who has to ask about covid exposure each time and give a new clean mask and I have a bit of a joke together each morning; I say "no, no, no, no, no!" and stamp my foot and he laughs. Today there was a new man; he did not get my joke.
The other patients feel like family to me. Those of us in the women's changing area talk, share our stories, connect. I believe this helps us all. We feel less alone. We are Black, Asian, White, Hispanic, all dealing with same but different; and we are different but same!
May 9, 2021
One of the known sequelae of mastectomy is developing a seroma, a collection of fluid under the skin, where the breast tissue once lived. Surgeons work to prevent this by placing drains at the time of surgery and measuring how much fluid accumulates each day. When that is below a certain amount the drain is removed, hopefully for good.
On occasion, that fluid reaccumulates as the body works to redistribute the approximate 60% fluid it contains. That’s what has happened for me, even as my lymphedema specialist has worked to help my body mobilize fluid everywhere.
I have a new drain in place on the side without cancer, even as the side with cancer accepts the final radiation treatments. The skin on that side is peeling and red. More irritated than the most dramatic sunburn I can imagine. More heat radiating from that inflamed tissue. As the radiation also targeted the tissues underneath, my pectoral muscles and the fascia over my ribs scream at me. “Be easy with us!” they say.
My radiation oncologist tells me to keep that side moving, to continue to stretch so as the expected scarring occurs, I will retain mobility and flexibility. I thank my Nia practice for what flexibility I do have.
My surgical oncologist says I need to keep the left side, the drain side, still, so it can scar and heal, hopefully avoiding continued fluid accumulation.
Wow.
One side long, one side short; one side still, one side moving. Thank you Nia FloorPlay, stage 2, creeping!
Thank my lucky stars I know about P5 of the Nia white belt- awareness, and can pay attention to two body parts at once! Thank goodness for my Nia blue belt communication principles that help me stay centered and grounded, and in communication with these completely different relationship needs at the same time! Thank goodness for my Nia brown belt skills that help me manage the energy it takes to stay aware!