Cancer Journey – micheleplumbstowell.org

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.

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.

178 On Retreat

I think I have heard from at least three people this week on the topic of retreats. People are feeling called. But they want to “go”. There is something pushing from the outside, asking us all to GO within. Longing for a location is holding people back.

The water is my chosen retreat location. When I have the umph to travel, I go to rivers, lakes or oceans. A shower will do the trick in a pinch. Sometimes, with the apparatus involved in my daily life, there are days without a shower. If you are working with a gratitude list, remember to value that you can take a bath or shower. Some of us cannot. It is a luxury. Sponge baths do nothing for my soul (or my hair).

Everyone has somewhere or something that assists in the connection to Spirit. But improvising is much better than neglecting the call.

I can improvise with yard work, because being in nature works for me too. I can also travel to local water features. We have a lot of beaches, and even McCollum Park has the beautiful sounds and sights of the creek, just minutes from home.

Beyond finding a location is intention… and follow through. This may be more difficult than getting beyond the wish to retreat. It must become a priority.

Although it makes me feel busy, and chemotherapy is already a full time occupation, I signed up for a couple of “events” online that create the container for “retreat”. One came through Starfeather’s Meetup groups (searchable with her first name on the Meetup site). It is a weekly group with closed participants, and holds me in a space of eight weeks of intention.

Another is an eleven day event through Amber Kuileimailani, in her Woman Unleashed programming. It holds me to daily introspection, intention, and soul searching. This one is called Soul Success Initiations. I think I paid $22 for it. Money, or lack there of, does not need to define your retreat either.

Retreat leader Amber Kuileimailani Bonnici — Amber Kuileimailani Bonnici founder Woman Unleashed

The two messages are working well together! Fused. Merged. All elements of retreat.

The hardest part of the inner journey is quieting the outer world. When we cannot escape our roommates, we have to figure out how to create the elements of escape WITH them, or at least while embracing their presence.

A daily walk, or an hour behind a closed door, or just an early morning time of focus can work. Amber’s program is at 6am Pacific time; no one is up (and it is recorded for people who need alternate timing). With Starfeather’s group, we also meet on zoom, but I take my computer behind closed doors.

Retreat. The universe is asking for it. Your soul is calling. Find a way.

174 A Week of Clarity

I’m pulling the dead plants from the yard, trimming the ivy. The hoses are put away, another load ventured to the dump. We are in motion. All of us are being swept along with the tide.

Maybe it’s the chicken that Kwami makes and I pop into my chicken soup. Maybe it’s all of the applesauce of the past few days. This last week (much to the opposite of the beginning fog of the last chemo cycle) has been a space of rapid fire ideas, motion, and clarity. It is echoed by many of the writings that pop into my inbox. There is transformation in the air, in the ethers.

I have bigger images of what the world can do, yet, there are tweaks and goals for me on the smallest of scales. Sort the drawers. Take a class (or three, I think I have three). Remember food, and journaling, and the blog, and the people around me, and…

It’s movement. It is like the chemotherapy, the partner to my body, moving through it and making changes. I can tune in and feel it. It’s like swirling, tiny bubbles, moving around in specific spaces. Nausea is how it might be defined by someone who is unable to separate from the experience, but it isn’t that. It is very intentional, very interactive.

Maybe people can resonate with the nausea on the political front. The tension, upset, and uncertainty. Moving us… forward? Hopefully forward.

I’m pulling the dead plants from the yard, trimming the ivy. The hoses are put away, another load ventured to the dump. We are in motion. All of us are being swept along with the tide.

165. Too Serious

When I walked out, the staff dramatically came to my side. “Are you all right?,” “What happened?,” “How can I help?” I was entirely puzzled.

This story may be making a repetitive return today. It is Cycle 4, Day 5, and I need to lighten up.

One time, I was volunteering at the Girl Scout office, making phone calls in the back room. When I walked out, the staff dramatically came to my side. “Are you all right?,” “What happened?,” “How can I help?” I was entirely puzzled.

Apparently, the look on my face was abysmal. Shock and terror. Anger. I don’t know. I felt nothing. There was a cat hair on the roof of my mouth, and my tongue was aggressively working to remove it. That must have altered my facial expression.

A happy woman clown with rainbow color dye hair — Happy clown

Sometimes, we are just too serious. Sometimes, the world isn’t as emotional as it appears. Sometimes, there is a cat hair on the roof of your mouth.

165. A Difficult Topic

If you can reach out to an aunt or friend, send a note, have a five minute text conversation, drop off a muffin… then do it again next week and the next and the next, you may be surprised at how your heart can grow.

There are lots of hard subjects when it comes to illness and death. I could make the title a twelve part series without blinking. One of the hardest is “caring enough” without “caring too much”, using the verb form of the word.

From watching others and my journey, when there is a diagnosis or an onset, people pour out of the woodwork with compassion and assistance. Cards, flowers, food, check ins, they get overwhelming and maybe even annoying. It’s wonderful to hear the words of love and appreciation, but at some point it becomes exhausting. Different people are going to need different levels of interference and assistance when they are ill.

When Grandma F went into a nursing home, I was less than 30 with two children under two years old. I still feel the fury I had for people she cared for, who called her every day for support and love, who pronounced their undying dedication. She needed them and they did not reciprocate. Of course they didn’t. It was not malicious, I see now, but a statement on their emotional stability. It certainly was not fair! Grandma would have loved calls and visits, but who teaches people to have a one sided conversation, or to balance the dynamics of love when they are feeling their own sadness and loss?

Dad is still in a Memory Care facility. When he entered, there were people that he recognized. He was conversational. His wife Jan has always been gifted at “being there” for people, and she is still by his side when he does not speak coherently or recognize any of us. Dad was also a huge support to many. And they were unable to support him, even in the best of his difficult moments.

There are a couple of people in my life that endure Chronic Fatigue, which spreads out into a vast variety of pain. I can’t imagine how difficult it is to be in that position, or to have the role of partner/caregiver. But how do we support the emotional needs of the people behind the pain?

I’ve done a pretty thorough job of shifting this topic away from myself, but being in the depths of a chemo cycle, this is frightening. I can see that emotional needs and distress cut deeply into those in the caregiving roles. I can see that the people we have loved and who have loved us move away rather than toward the situation. I can see the helplessness from both sides of the coin.

Magic. I wish there was a magic wand and an instant remedy. No one should lose themselves forever in a life overwhelmed by care for another. Yet, I feel like we need to accept some responsibility for loving the people around us, even in the worst of circumstances. Balance, again. If you can reach out to an aunt or friend, send a note, have a five minute text conversation, drop off a muffin… then do it again next week and the next and the next, you may be surprised at how your heart can grow. Like the classic tale of the Grinch, like Tonglen meditation, the goal of life is experiencing an enormous heart, Universal Love.

160. Full Disclosure, New Ultrasound and CTScans

Remember that lymph nodes are the home of the immune system, so they can be active for positive, white cell creating purposes!

Chemo resumes

Today we met with Dr. Wilfong and I also started another chemo cycle… so now we are a bit more clear on the story to tell.

First, thanks for all the positive energy, time, thoughts, and prayers! I have been living a very normal existence for months, certainly due to this. I am so grateful to all of you for being in my world.

An inny belly button

The plan was to wait for the wound to heal, and then start chemo. But it’s been 5 months since the mass was removed in emergency. The word “wound” makes you think of open flesh and ugly Halloween makeup stuff… but this is like a half sized, inny belly button, wide enough to slide a Q-tip through, and only wide enough because we keep it open at the top so the depth does not infect. It would be happy to close up at the top. It ranges in depth from 5 to 8 centimeters. This is not an ugly zombie wound. Its craziness is inside the body. It no longer hurts at all, and even packing it is simple, quick and basically painless. BUT, it isn’t healing.

The first guess that could still be accurate is that my body hates sutures, and won’t heal ’til they’re gone. They dissolve in 4 to 6 months after surgery. So, I have another month of that being remotely possible.

The second guess is that cancer cells are inside the wound, and a smart body is saying, “No way dudes, get out before I seal this deal.” I wish I could say those were Dr. Wilfong’s words, but they are mine. He is far more professional and chill than to say that.

CTScan, contrast dye CT Scan and ultrasound

The medical people did a CT Scan, a contrast dye CT scan, and a uterine ultrasound.

The uterus is similar to the scan from 6 months ago (there is the thick uterine wall (endometrial cancer) and a strawberry sized mass). Similar is good. It’s just hanging out. There is NO prioritization or talk around this because it is captured from spread and quiet. It is NOT colon cancer. It is a totally separate rebellion.

The CT results posted several changes. We didn’t really discuss the list, because the bottom line of the list is more important to me. The cancer is active, noticeable in the abdomen and lymph area. There are no new masses, or growth noted from the old areas. The liver shows a 3 centimeter shadow, but the scan calls it a lesion, so it can be scar tissue from the mass that disappeared there. Nothing new in my journey. Just activity. The lymph nodes are twice the size as before, creating. Remember that lymph nodes are the home of the immune system, so they can be active for positive, white cell creating purposes! Yet, we also know they were infiltrated by the colon cancer. So either way, it would look better if they were happy and back to half the size and resting.

Chemo goals

Last time I started chemotherapy, we did Cycles 1, 2, and 3. The initial goal is generally 12 cycles. Options happen all along the way, so it would be ok if I did 7 total, or 20 total. Getting back to chemo after the surgery has always been the plan, so that is also unchanged. This body reacts very well to chemotherapy, and is expected to do the same… stopping the cancer once again as it did in just 3 sessions before the surgery. The body has only mild side effects, another blessing.

The drugs for the chemotherapy treatment are reduced. That could make it even easier. There is no huge colon mass, the biggest reason to party! I know the medical team is breathing a sigh of relief, because they wanted to resume their piece of my healing puzzle with the twice monthly infusions.

The adventure continues

I do have neuropathy in some fingers and a toe, which is one reason for lower doses. I found out that acupuncture is covered by my plan. So I will add that to my list of “places to go in a pandemic.” There are drugs for neuropathy, if I decide to go that route over time. My brother Mark and DeeDee recommended the drug (from their medical exposure) for narcotic highs and lows more than healing. Needles are way more fun!

So, we’re off on another step of the life adventure. Facing challenges and growing are our only purpose on this big blue marble. This year has certainly provided a lot of potential for us all!

130 An Adventure at Wild Waves

My mind is crazy with aggression. It wants a way to force the healing of the wound. Pushing 20 supplements a day, so much protein consumption I feel like a rapid carnivore, green smoothies, a wound pump. What more? I swirl round and round and round and round.

I was talking to Amy about the medical story, about how I feel as if I am in a whirlpool. I go around again and again, but there is no advancement in my position. I am stuck, yet I am moving.

At the wound appointment this week, the wound measurement moved a half centimeter. Pathetically, that is less than a quarter inch. Honestly, they don’t even measure to that distance of accuracy. Flesh moves around. And there is no consistency in the position I am in when it is measured. Futile. Until it is a few centimeters difference, the measurement game is just that, a game.

Apparently, some bodies don’t like sutures. If that is the case, the body fights the stitches like they are the enemy. The wound won’t heal until the sutures dissolve. It takes four to six months before they do that, completely dissolve. I am hoping that my body despises stitches. It sounds like an easy solution. The surgery was May 17, four months ago!

So, when the kids were teenagers, Wild Waves had a ride where you sat in an inner tube. There were several pools connected by waterfall slides. The tube would be in the whirling pool, and the water would catch the tube and take it over the slide to the next pool, eventually. Sometimes there was extra whirling around.

We passed through three together. At that point, the group of kids shot out of the pool, and continued down to the next and the next. Meanwhile, I was looping around again and again. Every time I came near the slide, the water would move my tube quickly past and take a different person. It was a looooong time. The teens were bored at the bottom. They went back to the line, passing me as they walked up the hill to the top. And then they passed me again in the ride, as I swirled around in that same crazy pool. Nyasha said, “You have to be more aggressive.”

After a few more loops, I finally stood up with my tube and walked to the slide, and forced myself over the falls.

124. Into the Dark

There is no comfort in darkness. No safety in the unknown. Only the paralyzing fear and the desperate thumping of the heart.

Nyasha Stowell

Darkness. When it’s dark, when it’s night, death feels closer. Not some fun anthropomorphic vision of death like in Terry Pratchett books. The kind that lurks in the darkness itself, in a way.

When I lay down and shut my eyes, thoughts race. I allow myself a glimpse at the edge of that cliff. Teetering above the void. What would it be, to shut my eyes and step off that edge? What is waiting out there?

From the security of cliff’s edge, I cannot see. I cannot get a taste of it. I cannot even get my mind around it. The idea of giving up this world, stopping breath, and the flow of blood sends adrenaline through me. Tells my heart to beat faster, stronger. Tells my lungs, take on all the air you can. My body seeks to further distance itself from the precarious edge we are all tripping along.

The body is delicate. The body knows this, but seeks to distract itself with day to day dramas. But in the darkness, it’s not so easy to forget. So when darkness comes, the soul can more easily ponder the edge. The tiniest fraction of space and time. The gossamer nothingness that stands between here and now and that deep dark unknown.

The body is unwilling to spend too much time at the edge. The body fears it’s fragility, for it has an end, outlined and proven again and again in shootouts, car collisions, and cancer. The body ends, in decay or flame. But from it something escapes.

I think the body must resent the soul, for the soul is free from this temporary existance. Allowed to explore places the body can only dream about. So when late at night, the mind touches the only thing it can. The very edge of this cliff. And even the edge causes the body fear.

There is no comfort in darkness. No safety in the unknown. Only the paralyzing fear and the desperate thumping of the heart.