117 Three Months Since the Colon Surgery, Flip Side

The neuropathy in my fingers makes cooking and cleaning, crafts and typing, tingly and “painful”. My left thumb, left pointer, and left center fingers are currently hard to guide, typing the wrong letter half the time. I can feel it the right hand at the moment, but is having less obvious effects.

It has been three months since colon surgery, four since the beginning of chemo treatments.  And I want to acknowledge that there is a lot of process happening in the realm of healing.

A miracle has occurred.  AND, there are a lot of humans, and a lot of cells of this human, that are still singing back up to the lead.

The neuropathy in my fingers makes cooking and cleaning, crafts and typing, tingly and “painful”.  My left thumb, left pointer, and left center fingers are currently hard to guide, typing the wrong letter half the time.  I can feel it the right hand at the moment, but is having less obvious effects.

The wound is still open, which sounds worse than it appears.  It looks like I have a second belly button two inches below the first, not too impressive.  But it is seven centimeters deep again.  It heals.  It unheals.  It gets “packed” every day or two.  That’s when the hole is filled with material.  In the past, it felt like having someone open the space and then blast it with a culinary torch.  Now, it is mostly annoying and rarely painful.  Today the wound nurse, Nancy, popped a blister inside near the opening.  That wasn’t comfortable.  But overall, the process has grown to tolerable.  And Nancy is a kind and wonderful nurse, so visiting her every week or two is a gift.

I’m gaining weight.  If I was a twiggy cancer survivor, that would be positive.  It could be because I am consciously trying to eat protein four times a day for the wound.  It could be just eating in general.  Or lack of the extraordinary motion of my historic self being shifted to couch potato status, or rather, active potato, like one slowly rolling down a gradual decline.

I don’t know what is happening in the uterus.  It is on the back burner.  But I do experience “post traumatic stress” when I think about a hysterectomy.  I just can’t fathom another surgery.  I had post traumatic stress markers when I watched myself think at the clinic today.  There was a blood draw, and my mind wanted to run away.  “Fight or flight,”  it screamed.  The young lady taking the blood was perfect and I felt nothing.  I watched the overall situation, and pondered my self.  When Nancy measured the depth of the hole, and faced down the hematoma, same reaction.  The mind is a strange.  Post traumatic stress needs to be handled like a child.  Hold it’s hand.  Listen deeply.  Great empathy.  And a Thai ice tea shake with boba after the experience.

My body is sore.  It’s hard to convince it to walk.  My hips hurt.  My right arm has one muscle that is super tight.  I rarely sleep over two hours before I wake, then sleep another two, and another.  Sometimes my inner heart is exhausted!

Three months is not a lot of time.  Three months.  I could easily have left this planet for another experience.  Giving myself a handful of months to put it back together feels valid.

If you are healing from something enormous, three months is nothing.  Keep healing.  Keep holding your own hand, listening, having empathy.  Sometimes your inner heart is exhausted.

30. Pain

A Palliative Care Team is a doctor, nurse, and social worker who follow the overall medical case of a patient.  They offer support.  Pain medication adjustment (I currently have no pain beyond the Tylenol level).  Listening.  Direction toward people or programs (we spoke of programs like Death with Dignity and Hospice, and the team directs the right specialists to call me).  They are advocates, a cheer squad.

Yesterday Helen, the nurse in Palliative care, and I were speaking of neuropathy and pain.  I explained my experience.  There is a difference between noting an experience in the body and perceiving it as pain. I looked closely to figure out how to explain it.

We have an incredible, intricate body system.  It sends sensations and messages constantly.  If I tell you to speak to me about what is occurring in your foot, you can focus there.  In my foot, I can feel pressure from where it touches the bar stool.  I can actually hear a thrum sound, weird.  The inside of the heal is cold.

Other people describe neuropathy as pain.  When I described it to Helen, I saw different levels of sensations.  There can be numbness, or tingling.  It can come as energy that is like needles sticking out from the body, going beyond the edges.  To me, that is not pain.

In the example of neuropathy, pain appears when there is an excess or a shock.  If I accidently grab something that is frozen, the body screams in pain.  Or really, the sensations that I can usually interpret, come in such a rapid and abundant way that I am overwhelmed.  Pain.  Pain is physical urgency.  Run from the tiger.  Pull your hand off of that stove!

Slow it down.  Shift the focus.  Or, look deeply into the pain.  All of these move me to awareness and perception.

20. Chemo Experience and Side Effects

My oncologist speaks some version of “Don’t live life for chemo, do chemo in order to live life”.  He speaks it in profound ways, repeating it a lot.  I love him.  I love that we match philosophies.  His name is Dr. Joshua Wilfong

So my first set of chemo drugs was a bit more than two weeks ago, and in the last three days I had the second set of infusions.  

They measure chemo in cycles and days.  The first day of the first infusion is Cycle 1, Day 1, adding days up ’til the next time there is an infusion.  My first Cycle had 15 days just because of scheduling stuff and getting a pattern for their calendar.  Most will be 14.  And if I want to move things around and take trips or schedule fun, it can be altered.  My oncologist speaks some version of “Don’t live life for chemo, do chemo in order to live life”.  He speaks it in profound ways, repeating it a lot.  I love him.  I love that we match philosophies.  His name is Dr. Joshua Wilfong, and he could be a hot young doctor on one of the shows (I tell you this because someone asked.)

In my vast experience of “twice”, I have found day 1 to be emotional.  It could be because I have a sense of violation whenever medical people mess with me.  It isn’t the people.  They all rock.  It is the being poked and prodded and feeling pain and annoyance.  People have pointed out the PTSD from my six month run with MRSA the year mom died.  I neither like labels, nor believe that I have to adopt a running story in my head from a past occurrence.  But the body does have cellular memory, and is deserving of my compassion and listening.  Don’t mess with me on day 1.  I will cry.  

I feel elated and capable on days 2 and 3.  I have had Reiki healings on day 2 both weeks, and that’s playing a part as a spiritual drug accompanying the steroids.  God jumps in intensely to help with the chemo goals.  It is not a fight, it is a dance.  The chemotherapy is helping the body with selection of which cells to let go of and which to keep.  Ultimately, God runs that show, but we pretend, a lot, that we have power.  The Divine is very patient with us, and uses our medical tactics to its advantage.

I just started cycle 2, day 4.  

Overall side effects have been weird, wild, expected, unexpected.  Hard, but mostly easy and perceived as adventure and empathetic understanding and curiosity.  It’s a ride, like Disney Land.  It is neither good nor bad, just extremely new.  I know some things will fade from my noticing altogether.  It’s good to look now while they excite me.  Some will just fade to the level of an itch that I ignore.

Starting at the bottom, I have had a sensation of burning in the bottom of my feet.  I wake up and feel it. Then it isn’t there anymore.  I have also had tingly toes.  Tingling is what the doctors call “neuropathy”.  The Eternal often speaks to me with that same sensation, so I look at it in both of those ways. 

I am reminded about how I am connected to Source by my body sending weird energy waves. It has happened this way for my entire life.  I always had a shiver shoot through me during grace at dinner, even as a child.  So I get a two for one here. 

Neuropathy has an outward feel, like pin pricks from the inside moving outside, or like energy bursting outward.  The feeling could be negatives leaving my body, or it could be seen as energetic healing for the entirety of the world coming from my neural system.  Love it.

I have had cramps in my lower legs.  I can have those anyway.  Maybe it’s more from going on walks than chemotherapy.  Who knows?

Dry skin is always an issue for me, and the chemo really brings that out.  When I am thinking about different perceptions, dry skin is a “sloughing off”, a resurfacing, a change in cells.  I have some themes here.  It is appearing at joints in my body, the back of my hands, my lower face.  If you follow worlds of symbolism, these are all very clear messages.

I can feel the chemo doing work on my lower abdomen.  It comes in what others might perceive as nausea.  My nausea, quite literally, is all in my head.  I can sometimes feel a swimming feeling in my brain, like getting off of a spinning ride.  But it hasn’t lasted, and it is fully tolerable, and I have pills and pressure point bands, ginger, and such to rely on; I haven’t.  No vomiting. 

The chemo work with the intestines feels like dancing.  It could be negative dancing, but really comes across more like ballet.  There is cellular movement.  Reconfiguring.  It gurgles and bubbles and pirouettes, dives and dips, moves fast then slow.  I could sit and watch.  I think I haven’t wanted to watch for long because I have believed I would be sick.  I might look more closely to hear the depth of the movement.

There is “neuropathy” in my fingertips, on my lips, and across my cheek bones.  Again, it is such a beautiful energetic thing, as well as something that causes focus on changes needed in daily life.  Cold is a problem, cold air, cold water, touching anything cold, drinking or eating anything under room temperature.  That changes a lot. 

It’s hard to cook without touching anything cold.  Even preparing vegetables is cold.  Theoretically, I put on gloves to remove things from the refrigerator or freezer.  I have to warm up a smoothie.  Really?  Warm green shots.  Really?  And I am not accustomed to waiting for the faucet to spew physically warm water before sticking my hands under it.  If I make that mistake, there is a lasting physical pain in my hands.  Not long lasting, but lasting. 

They tell me that neuropathy can be permanent.  They tell me they are trying to adjust my medications to minimize it.  I don’t believe anything I hear about the negatives to come, but sometimes my body does it anyway.  They tell me that they don’t know if what I do now affects the future outcome.  “Everything is individual.  No one reacts the same way.” 

Oh, my esophagus can be so affected by cold foods that I would be unable to breathe.  Good times.  And it fades, so somewhere in the second week of the cycle, maybe day 7 or maybe day 11, there is a reprieve.  It reappears with the chemo treatment on day 1.

My mouth gets sores, like cold sores.  They can be on the roof of the mouth or in the cheeks or on the back of the throat.  They seem to be triggered by sweet things and cold things.  Gargling salt and soda water four times a day is the doctor’s advice for this common situation, prevent it, rather than treat it.

So, so far, so good.  Although the list felt long and tedious to type, the chemo does run into my body for 48 hours a week.  And then there are a few more days where the body is interacting with and flushing it.  And then, recovery from it, where the body gets its chance to recreate the white cells and build happy, vibrant, healthy tissue. 

The dance, back and forth, ballet, tango.  Drama, peace… balance.