249 The Realities in Chemo Cycle Eleven

“I am health.” I go out and garden. I take walks, shop, do the laundry, clean, live the normal stuff.

My brain is glitching. Sometimes I cannot speak the correct words. Sometimes I spend a lot of time on google, looking for a word when I type. They are not complex words. I might not remember what the room with the stove and refrigerator is called.

My body is glitching. Systems are slipping. This is the first chemo cycle that I have entered with a blood circumstance marked “Low” on the labs. All other cycles, they have been normal on Day 1. The tests are done the day before. The body has had two weeks to process the last cycle and “recover”.

Systems are slipping. Dry, cracked skin, lips, feet, private parts, ostomy parts. Bladder infection. Ostomy hernia pain. Sinus issues.

I get it now. I was definitely surprised at first, when it was “easy.” But now I understand the movies, the way chemotherapy is portrayed. They are picturing the end parts, either the death part, or the end of the set of cycles part. They are teaching us empathy for the worst, for the time when others are needed most, or have no chance to be close (because the person just has nothing left).

When I described my symptoms at the Cycle 10 appointment, I honestly thought that I wouldn’t be doing Chemotherapy that day. Too many symptoms, too much break down, no week of balance in Cycle 9.

But I did not understand that this is “normal.” The further we go, the tougher it gets. The “quality versus quantity” equation is tested. Quality is observation. It was a week of harder, and a week of easier, and now there is no respite. Can consciousness bring awareness away from the deepest hardships? Do I have the ability to override the pain, to manage it with my mind and spirit? Can I forgive myself for crashing, for crying, for experiencing the depths of this process? Can I just be with it, flow with it?

woman with floral headdress lying on green leaf plants
Chemo Cycle eleven is like a woman in labor Photo by Ezekixl Akinnewu on Pexels.com

The chemotherapy is not a cure, but a postponement. In the ANRP appointment, she implied that I would go directly into the next cycle. I haven’t seen Dr. Wilfong for a while. He doesn’t work on Tuesday, the day of my infusions. I just noticed that they have automatically scheduled a session 13, 14, and 15.

I did not agree to this. I did say to Nyasha that I thought I might be able to do a couple more, if the advantage was tremendous. But no one has spoken to me about any of it. And my body is pretty down, with this one to finish (I am hooked to the at home pump until tomorrow), and then process. And then another. Where will I be?

When I was in labor with Nyasha, I told myself I could survive 24 hours. Babies are born in 24 hours (I thought), in fact that is a generous number. When we came to 23 1/2, I was doing a lot of desperate praying. It is likely that “transition” does that to most women. Nyasha was born at 23 hours, 45 minutes of labor, which when I think of reality, means the birthing process took the full 24. Did I create that? Poor manifestation. Go for 12. Not too short, stressing the body, but certainly long enough.

I’m in chemo labor. Twelve cycles. I have set myself up to make it through 12. I scheduled a trip to the ocean, a week and a half after infusion 12. To heal, to regroup. It is not flexible or refundable. It isn’t even optional.

“I am health.” I go out and garden. I take walks, shop, do the laundry, clean, live the normal stuff.
“I am joy.” I laugh, read, write, smile, share, inspire and am inspired.
“I am emergence.” I can watch my experiences, process, consider my body in separation and in communion with God. I am the eye of the storm. I am grateful.

245 Ridiculous Grace-the Lost Article (from after the CT Scan)

Ridiculous grace. It is ridiculous grace that we took this breath, that we can feel the heartbeat, taste the water. It is ridiculous grace that I am on the planet today, typing, tasting, hearing, knowing

One thing about chemicals in the bloodstream, they certainly cause alternate awareness.  I am actively working to rinse the contrast dye and chemotherapy drugs from my system, yet they are altering me in a large way the past few days.

It’s probably better to avoid the world, and safer for the world, but I was out and about.  I wanted to re-send Amisha’s holiday note; it came back by some post office error, ready to arrive at a more timely alignment with Divinity.

I have also been preparing a bit for the people who surround Dad and his Hospice care, and wanted to get to that, knowing that they will be as affected in his death as we are.

And lastly, there was a need for me to seek a protein source and more liquid options for washing this medical stuff out, at this point, anything I am willing to swallow.  Water tastes disgusting.  How can water taste disgusting?  I love water. “Go with the flow and don’t judge,” I heard.  More empathy, more awareness of others.  I am learning.

On the road, the radio gave me political information for about three minutes before I had enough.  I switched over to Spirit, the Seattle based Christian station.  Kwami doesn’t like lyrics.  I find guidance in words, deep information that leads me to insights and answers.

Ridiculous Grace.  Two words that came from a Tauren Wells song, Known.  I burst into tears (not in public, in the car, the public came through my adventure safely).  Ridiculous grace. It is ridiculous grace that we took this breath, that we can feel the heartbeat, taste the water.  It is ridiculous grace that I am on the planet today, typing, tasting, hearing, knowing.  

And why I was crying is that I saw how important each person in my world is, so clearly, how perfect.  And I just wanted them to see through my eyes, to know themselves this way, as the ridiculous grace of this moment.  And my eyes and heart are crying again.

I am grateful for Grace, Ridiculous Grace, that shares this picture, this Truth, this love.  Thank you for being my ridiculous grace!

235 CT Scan and Cycle 10

But 10 already bodes brighter. The storm has passed. The sun is shining.

It will go fast.  It will seem like no time at all.  The end is near, 12 chemo cycles, just one month to go.  Already?  It feels like an accomplishment, like there is gratitude for the experience and for the end.  Tears pour down my cheeks, wet and hot, and the deep emotional meaning eludes my mind.

Nicole, my infusion nurse commented, “What will I do without you?”  I laughed.  They will use chemo again.  Unless…miraculous remission. Let’s cheer for miraculous remission!

Cycle 9 was rugged.  I usually have a week of easy.  Nine didn’t believe in an “easy button”:  Yeast infections popping over different surfaces, cold sores, cracking skin, burning stoma with blistering skin, and the wound deepening.  My ground was quaking.  I couldn’t get my footing.

light sea dawn landscape
Photo by Pixabay on Pexels.com

But 10 already bodes brighter.  The storm has passed.  The sun is shining.
The CT results came in, and the colon cancer continues to react and retract to the chemotherapy.  The lymph nodes show to be smaller, less active.  That is the ultimate goal.

Health is a gift.  Breath is a gift.  Every day that we can contribute is worth celebration.  Our lives are a blessing.  Dance, sing, celebrate!

Today, make a list of past challenges you’ve overcome and give thanks for the strength you had to overcome them.

226 Body on “Splat” – Chemo Cycle 9

One thing I have learned about the process: predictability of unpredictability. I ponder what each day will hold, create, and express. I don’t ponder long; thinking about it is pointless

I have so much gratitude… for white cells working hard, for red cells delivering oxygen, for the Grace that allows me time to heal and be home rather than working, for the water that clears my system and the rain falling from the sky, for the daytime, and the night.

Chemotherapy Cycle 9 was pumped into my body on the last three days of 2020. It was doing its work, and is now moving on.

One thing I have learned about the process: predictability of unpredictability. I ponder what each day will hold, create, and express. I don’t ponder long; thinking about it is pointless.

The picture I have for the last few days is like I am a flying squirrel. I set my sights on a clear space through that structure over there, soar down from the tree, and, aaaaaaaaaaaaaaaaaaaaak, it’s a window. Brakes on, mid air scramble, I open my arms and legs to stop the motion, and hit the glass, lightly, but in full bodied glory. That’s Cycle 9.

brown squirrel with hands up Caption: Photo by Pixabay on Pexels.com Chemo Cycle 9 feels like I am a flying squirrel.
Photo by Pixabay on Pexels.com Chemo Cycle 9 feels like I am a flying squirrel.

Part of the process. Unpleasant. Not the worst thing that planetary beings have experienced. Mild, constant nausea, fuzzy brain (at one point, so fuzzy that words didn’t connect into sentences), acid running through my esophagus, crispy skin issues… And when I sleep too long, my back throbs from inaction. The stoma has been creative, burning and reshaping. I’m a barrel of monkeys, or squirrels, squirrels is more accurate.

Cycle 9. What an incredible number. Three quarters of the way through this original goal of 12. Seeing the end (of this part) around the corner. Optimism. The mist is clearing around the next adventure. Mystery. Hopefulness. A mild sense of excitement. What will emerge? 2021.

213 Ostomy Adventures

The stoma is like a superhero with shape shifting capacity, keeping it real, real(ly) unpredictable anyway.

My ostomy is like a mountain climber.  It enjoys finding new heights, new adventures, new challenges to overcome.  Do I appreciate this?  My face is distorted with puzzlement.  We all enjoy the other side, the overcoming part, the win.  So, maybe.

man wearing hoodie and black pants climbing up pile of rocks
Like a Mountain Climber Photo by nappy on Pexels.com

I have no idea what is normal.  With great intention, I have avoided research.  Information that leaps in front of me has been disturbing at best, and better to avoid.  An example of something I cannot unknow:  The stoma can separate from the abdominal wall.  No.  No it cannot happen.  Not here.  I am closing my eyes and plugging my ears and loudly singing la la la. 

Since chemotherapy is infinitely creative, constantly changing up the side effects, never the same from one cycle to the next (for me anyway), this is where I place the blame.  Not scientific.  Not proven.  Just a scapegoat in my moment.  I think the chemo changes the world of the stoma, and the outlook of the ostomy overall.

The stoma is the part of the colon that meets the world.  It sits a little lower than my waist line, to my left of the belly button.  It looks like, well, l like a round dark pink, wet circle.  It is a part of my colon that has been attached to the outside of my abdomen, making a makeshift anus without muscles, direct truth.  I have no emotion around it.  I am grateful that it functions well!  It is more a novelty than a problem.

So the stoma reacts to the chemo drugs.  It gets darker and larger.  It has actually changed shape, color, and size.  Or rather, it is like a superhero with shape shifting capacity, keeping it real, real(ly) unpredictable anyway.  

Ostomy products assume consistency, and they certainly don’t assume shifts that happen over hours of time.  I can watch the stoma change in the mirror, moving from 2 1/2 inches down to 1 1/2 in a matter of seconds.  Challenging.

I need to adhere a bag to the outside of that ring, with the correct opening size, without a shift that could loosen the bond.  Challenging again.

This will be fun for the fashionistas.  The company that makes the products is called Hollister.  The clothing company.  The ostomy product company.  I assume they are unrelated, yet, I do ponder which came first.  Is it like the Magnum ice cream company and the Magnum condom company?  

Do try the Magnum ice cream bars, highly recommended.  I will say the same for the condoms too, if that is something your world rocks… but not necessarily from memory of my experiences. I just don’t remember. But one of my life quotes to the outer world is “Wear a condom and get a two-year degree.  You will regret neither.”  No bias to one condom company or another.

Hollister.  I called Hollister.  There are very helpful consultants for all of these things.  It would be like if you owned an emu suddenly… from our family Christmas virtual gift exchange perhaps… and the emu had a breeder and vet tech professionals that helped you learn what to feed it and where to keep it.  Ostomies come with professionals, and some of them are at Hollister.

Heidi at Hollister listened to my story.  Then she had a couple of new product options shipped right to the mailbox, free and easy.  And the adventure, what works?  Try one, try the other, work with rings, no rings.  

Our lives do this to us every day.  Sometimes it’s obvious, sometimes behind the scenes.  We know the big challenges.  We fight and complain and focus on the hardship.  As if climbing a mountain, I want to stop at the peak and appreciate the view.  I want to acknowledge the beauty of the journey, the moment in time where I have come to the accomplishment, and maybe even take a quick peek (peak) at the easy path down.  Just in the moment.  Here and now.

Challenges are what life is all about.  We forget.  We want to stagnate, stay off the mountain.  It isn’t a choice, the emu grabs your jacket, lifts you off the ground and violently trots your butt over to the mountain trails.  You have to climb to grow.  Grow with acceptance.  Grow with grace.  Take the moments to enjoy the adventure.

205 The Chemotherapy Advantage

The best way to describe it might be “work,” there is work happening. Something is shifting, moving, changing, happening.

Sometimes I sleep.  Sometimes I don’t.  But either way it isn’t a struggle.  

The first few days of a cycle, when the chemo drugs are soaring around in my body, there are more changes.  I notice that I can be snappy, or mean, or upset.  It comes and it goes.  I try to really focus, to keep that quiet.  Sometimes hard things spring coldly out of my mouth, and I shock myself, and see my truths and pain in the words.  And I grow.  I also hope my family can handle the balance.  So difficult for them.  How do you apologize for that?

Sometimes I sleep.  Sometimes I don’t.  But either way it isn’t a struggle.  

When I wake up, I can feel the difference in my cells, how the movement of the blood is altered and working.  It isn’t difficult to feel, almost more difficult to unfeel it.  It isn’t uncomfortable, just odd.  The best way to describe it might be “work,” there is work happening.  Something is shifting, moving, changing, happening.  That is the point.  

So this is day five.  Cycle seven has been kind.  I have accomplished an extraordinary number of things, have been able to eat in a more normal, balanced way (with Dr. Bailey’s supplement suggestion, the Naturopathic Oncologist’s balance), have been able to really ring in the holiday season with decorations and joy.

Sometimes I sleep, and sometimes I don’t.

Today I slept almost seven hours.  The past few days it was more like three.  Don’t panic.  It will balance out, I promise.  

I have watched the sun rise four days in a row.  The red tones rise up the mountain range to the East.  The window frames the scene like a moving, changing painting.  The gray skies turn a surreal pink behind the evergreens to either side of the snow capped peaks.  And a new day dawns.  Literally.  The world is new, joy filled, silent.  

Sometimes I sleep, and the dawn and I drift apart.  Sometimes I am awake and embrace each new beginning. 

203 Chemotherapy: Two to Five AM

I loved my red haired, crazy minded, stage performance perfect, middle school science teacher, Mr. Thompson, at Explorer Middle School in the late ’70’s. He will be that, I hear it in his voice, see the sparkle in his eyes.

When people picture chemotherapy, I think they picture graying skin, lethargy, the inability to eat and move and think.  Is that what you see?  What do you picture?

I look at a lot of people in the infusion room.  This can be the vision, the tired soul, exiting slowly… but it is rare.  One in eight maybe.  There are the young, and the very old.  The range is great.  I see children.  That is not what I want to see.  Last time I saw a graduate of the chemo program, barely old enough to be graduating high school.  Her port had been removed.  She was in a space of “cure”, of full remission.  She was visiting the doctor for the last time in the series, her parents were both there, and she had a gift in hand.  I don’t know these people, but I am so appreciative for her life, for their hope, for the beauty of that moment.

I see a lot of people over 70, the most common infusion crowd.  And variation.  A 60 year old man rolled in, wheel chair drop off.  It was the treatment, or maybe the cancer, that brought his healthy frame to the center in that way.  He walked to the bathroom and back, and his whole body reeled from the effort.  He gasped for air.  The nurse asked about comfort and oxygen.  He said he just needed a bit of time.

A young man sat twelve feet to my left (we are always distant, not just because of Covid, but because space is needed for apparatus and movement).  His infusion was for a health condition unrelated to cancer.  He shared his enthusiasm toward a new occupation, a redirection in his education.  He is becoming a middle school science teacher. 

The nurse and I groaned.  Middle school.  The hormonal crisis to meet all crises.  But the family teaches that age, the brother and his mother.  He knows this path well, and is so excited.  I loved my red haired, crazy minded, stage performance perfect, middle school science teacher, Mr. Thompson, at Explorer Middle School in the late ’70’s.  He will be that, I hear it in his voice, see the sparkle in his eyes.

Chemotherapy is not what is assumed.  The pictures, the people, the stories.  I am not sleeping.  Although the tired and lethargic moments appear sometimes (like at 10pm when the kids were still visiting), I am up at 2am, being productive.  I sleep a few hours each of the first few nights.  It doesn’t feel wrong.  I don’t fight it.  It is a chance for writing, meditating, evolving.

These are the gifts.  This is the receiving.  I am aware.  I have direct empathy and experience that opens my heart in a way that I cannot explain.  I want to scream it from the mountain tops, sing it in my spirit song, write it so clearly that it cannot be misunderstood.  I am living the most blessed of lives.

197 The New Take Home Infusion

t looks like a balloon that has been crossed with a hand grenade.

Reusable Chemo Infusion Pump

The old chemo infusion pump was a hard metal, heavy apparatus that was hearty, complex, a definite nod to the technological era, with a hint of permanence.  It might have survived a beating with a bat.  Durable.

The new concept is, well, probably cheap.  It looks like a balloon that has been crossed with a hand grenade. I feel like I need to add a thick Ziploc to the outside to reduce the odds of a chemo spill.  It has a one inch plastic hard tube at the end where they filled it.  This thing drops to the ground several times a day.  So far so good, but that tip is an obvious design flaw.  

Disposable Chemo Infusion Pump

It apparently uses body heat to time the infusion.  Something that was timed to the moment, 46 hours on the dot (old version), is now meant to go 42 to 50 hours.  Let’s just say, there was nothing left in the bag at hour 26.  How confident am I that the rapid rate of infusion was a great idea?  Not at all.  I feel fine, so we will go with that interpretation. 

All is well.  But I must be infusing by high body heat.  This time, we kept the sensor close to the skin.  Next time I will need to wear it outside of a layer or two of clothing.  Slow it down.

There is an advantage.  I can remove this pump myself.  It is disposable.  Toxic waste garbage can at the ready.  Storing that in the shed, just sayin’.  Not suggested, but definitely happening.  I am looking forward to removing it, so again, I’m not against short infusions, if they are safe.  I like to take showers!  And you cannot shower with a pump.  It only adds a trip to the office to have a pump removed, so maybe an hour and a half extra… but who wants to shower after already having to sponge bathe and dress before being in public?

So this is new growth.  It is something that was totally new to the nurses as they presented badly edited instruction material… then had to find and print (or create) a new version.  Guinea pig.  I am definitely a guinea pig.  The second for my nurse.  But the Central Kaiser has been using these for months.  So presumably, others have come before and survived.

And the Covid shots are on their way.  How do you feel?  Up for the challenge?  We are all in this process of experimentation with a new world every day.  The difference is whether we ride a wave of ignorance and inaction, or meet the call for advancement and growth, whichever way that takes the moments.  Choice.  Or grace. Or both.

196 Chemo Cycle 7, Can You Believe It?

The classic depiction on screen cannot convey the full body experience of chemotherapy reactions. Even to live with someone going through the process… I just can’t see that there is a way to convey the whole experience to anyone without causing distress, fear and overwhelm

The last day of the sixth cycle put me half way to the goal of 12.  And today is the third day of infusion, so the seventh cycle is now adventuring with my cells, helping them align.

There are strange things to notice.  One that comes to mind is that there is a lot of empathy for people in cancer treatment.  Yet, I don’t feel like I am suffering the route of peril (and some people truly must be).  There is a balance.  The classic depiction on screen cannot convey the full body experience of chemotherapy reactions.  Even to live with someone going through the process… I just can’t see that there is a way to convey the whole experience to anyone without causing distress, fear and overwhelm.  Yet none of those are necessary.  Cancer treatment truly affects every physical way of being.

It changes your skin, your throat, your lips, your neuro pathways.  The bowel, the continence, the urine, the hair.  It shifts the way your heart beats, the way things taste, whether you can eat something cold or not, eat something sweet or not, eat something with any spice or flavor, or content of fat.  It changes the muscles, the movement, the abilities, whether you sleep a lot, or barely sleep at all.  It makes good days and bad days… which are really normally longer stretches of moments that are perceived one way or another.  There really aren’t bad days, but there are days with a lot of moments focused on forms of survival.

It sounds so much worse than it is.  Yet, it is that, and more.  How can this make sense to anyone?  It just doesn’t.  I think that is why awareness in our culture is so limited.  This stretches out into all forms of long term illness.  How can we understand the plight of people in illness and disease, in emotional distress or monetary challenge?

How to Be an Antiracist by Ibram X. Kendi (Audiobook Excerpt)

Kwami and I have had several conversations about “walking a mile in another’s moccasins.”  He has been working with the concepts expressed in How to be An Antiracist (Ibram X Kendi). 

I was hit with knowledge around unfathomable empathy when I read Kent Nerburn’s books on his Indigenous experiences.  A white man, accepted into the inner traditions of Native cultures for decades, he shares a self expressed witnessing… that he can never fully comprehend the depth of ramification that the last 500 years has put on the cultural peril of the individual from Tribal decent.

I get this deeply.  If you think you can walk a mile in another’s shoes, you haven’t considered the obvious fact that you cannot (Kwami’s analogy).  You don’t have the same shoe size or foot shape. The shoes or moccasins will not feel the same way or work the same way for your journey.  The truth of individuality is that it is individual.  And apparently, if you want to begin to try to understand, you have to ask questions, not of a race, but of a person. Ask the person you want to understand, and attempt to drop your own interpretations long enough to hear, to really hear, what they need to convey.

This is big, even for the best of listeners.  Hard. Huge.

I get lost in my tangents, maybe for the Ultimate Goals. So back to the original, I am not complaining about my health journey or experiences.  There is a lot of joy.  There are tons of amazing people in the process, and even experiences I would not change for the world.  And there is nothing I can do to express that the highs meet the lows, that the wave has some form of gift cycle.  Spike meets spike to the other side?  Every cycle adds something new to the list of challenges, but also to the list of ways I grow and change.  I am grateful for this side of comprehension. Seeing the world from a new angle, a new light.

162. Cycle 4, Chemotherapy

And the world counts down, the little things, Halloween, Elections. Quantity and quality. The balancing act.

It may be a bit strange to address this as Cycle 4.  Chemotherapy abruptly ended five months ago with an emergency colonoscopy.  The pause was exceptional.  A CT scan midway showed nothing, no masses and no activity.  The body was given time to heal.  But we are in a remarkable balancing act.

Dr. Wilfong kindly shares this often.  Quantity and quality of life.  The balancing act.  Face it people, we are ALL in this balancing act.  I am blessed to be reminded!  

The chemotherapy is different this time.  There is much less in the mixture.  My body is not battling the masses or the colon issues anymore.  Yet, there are reactions to the chemotherapy drugs.  

I’m looking at them closely, because I realize I could use the classic words to describe the side effects, but it is in the details that we find the Truth.

Chemo and brain fog

First, there is “brain fog”.  It took me about 20 seconds pause to think up the words “side effects” above.  I have to stop and google search simple terms.  Thoughts fly away quickly, and if I don’t capture the important ones on a post it, they might be lost for a day or forever.  “Cancel the dentist appointment,” lost for a day.  “Name of the acupuncturist,” drifted in space for an hour. The lost forever examples are untypable.


But I think I could decipher brain fog spiritually.  Part of me has stepped aside.  The soul maybe?  It is busy elsewhere.  The thoughts of humanity are not so important.  It’s like brain life is happening as a secondary function.

This is the morning of the third day of the cycle. 

Chemo and nausea

Another ramification of the process is “nausea.”  I don’t vomit.  World, hear me once again, I do not yawn in technicolor.  It is not my thing and it never will be.  Period.  (Unless it is the will of the Divine that I might need another lesson in acceptance, to be determined at a later date.)

So nausea is a mild eye headache, probably due to the fact that my soul is over there instead of in here.  Disorienting!  Slightly annoying.

Nausea is also weird movement and gurgling and strangeness down in the abdomen.  It is activity more than illness.  I can stop and watch it, feel the motion, the details of the actions of my body in combination with the assistance of the chemotherapy drugs.  

They are creating a harmony, cells in cooperation.  It isn’t comfortable, but it isn’t awful either.  Distraction, sleep, anti nausea pills, and it’s a whole lot of complaining about true “mild discomfort” (not to be confused with the medical definition of mild discomfort, which is normally a journey to hell and back).

Cosmic rain

When I sit still, I think about the soft warm rain, pouring through me and over me, pouring through you and over you, washing out the impurities, bringing us all to our highest good.  That thought stays with me.  As the chemo pump is making its little noises beside me, that thought does not slip away.  (The pump travels with me for 46 hours after the main infusion, continuing the therapy after the initial doctor visit).

Chemo and sleep disruption

And last on the major side effects list is sleep disruption.  That means that I am typing in the earliest morning hours and paying close attention to all of these things, and seeing the bright side, the foggy side, the meditative side of this process. 

Right this moment, the neuropathy in my fingers is so mild.  It is less than before the treatment.  (I am thoughtless here.)  I called to book an acupuncture visit. One reason?  I am expressing myself, so the energy is able to travel through my body and outward, so it is not being trapped in the fingertips, another.  Hmm.  Weird.

Today, we head back to the infusion center at Bellevue Kaiser.  They will pull the connection out of the port, and the fanny pack and plastic cords will wait, relaxing for eleven days, waiting for Cycle 5.  

And the world counts down, the little things, Halloween, Elections.  Quantity and quality. The balancing act.