Stop For the Hush

 A friend met me for a fall hike yesterday and I had numerous moments where I had to stop in  my tracks and take note of the grace and beauty of the world around me.  I felt I needed to share some of my wonder and appreciation, and so I wrote this poem/prose.

The world is an almost twilight grey, with a few bright patches of eerily glowing leaves yet to cease clinging from their branches.  

The leaf strewn paths beckon and invite to crunch along their twisty ways. 

All is quiet and hushed, fall not quite done, but winter ever nearer in the icy air.

A sudden streak of bright white motion through the leaf bare forest. Two swans make their graceful way up into the sky.

Careful short stepping with toes gripping through shoes, we make our way on the slippery frost glazed boardwalk.

The lake is mirror glass still, golden reeds and white egret perfectly tranquil.  Not a ripple, not a breath of air to mar this perfect reflection.

Paths continue onward and upward, over hills and watching for rocks and roots hidden under the carpet of leaves, ready to catch a toe or turn an unwary ankle.

Leaves mostly fallen, and yet we happen upon some groves of bright color. Wondering at some strange chance of nature that keeps these brilliant moments in the forest.

Keeping eyes to the ground, looking for hazards we might miss the soft light glowing through the leaves above. 

A familiar sight each fall, greeting us like an old friend. The vivid leaves over the path remind us of falls gone by.

Making our way back to the beginning and through the towering pines. Crunching feet stilling for a breath or five. Listening for the susurration of the wind through the treetops.

Whispering to us to stay

and rest in the hush of the world

waiting for it's blanket of snow.

 

Energy Management or Not Enough Spoons

Energy Management: The process of tracking and monitoring energy levels to conserve usage. 

This is a forever tough one for me. I have spent years trying to teach patients and giving them strategies on energy management. But that was BC (before cancer) times.  When I thought I understood the concept of tired.  When I could push myself through my tired to run a marathon and the consequences were not very high.  I could recover in a few days, and it made me sore but never stopped me from completing tasks of daily function like showering and getting dressed and cooking something simple to feed myself.

For those who are unfamiliar with energy management, the most recent analogy that seems to work for people is you start your day with a certain number of spoons.  Each task that you do that day will take a different number of spoons, when you are out of spoons you simply can't keep going, you have to rest.  Different tasks take more energy or spoons to complete.  For example let's say you had a really active couple of days and then you wake up and realize you have a fewer spoons day with maybe 5 spoons to start the day instead of your normal 10.  Or you don't necessarily know that you only have 5 spoons, but you quickly realize that when you take a shower and get dressed and that takes 3 spoons, then making breakfast and eating takes 2 spoons and you have barely done anything and yet you absolutely must rest because your body is hurting or shaky or you cant seem to move your arms and legs anymore. Or when it gets really bad you feel super nauseous and better not move or you will start to throw up. 

People dealing with chronic energy depleting conditions deal with this every day and have to make decisions based on what energy they happen to have available that day or that moment. I have had to cancel plans with friends or plans for going out and doing activities that take higher energy.  I have had to change vacation plans to events that take relatively little physical activity.  I say relatively because my comparison is always BC levels for me.

I have spent too much time being tired and feeling sick and pining after the activities I really want to do, like go to an activity with a friends or even a walk though the woods on a sunny day.  Instead of the things I have to do, like get dressed and cook food that is lower in phosphorus than what I can get in take out or prepackaged meals.  I am not looking for suggestions to help, I know a lot of them and have used them when I can.  

One of the things I love to do is host a party. It brought me so much joy to have a group of friends over laughing and talking and enjoying food I prepared.  But what do you do when you have people coming over and you hit a wall in the middle of trying to prepare for them?  What if you can't even enjoy the gathering because you are too tired from all the work getting ready for it and you just want to lie down and take a nap?  That is a new experience for me, almost every day I get to the point where I have to lie down and rest and it might be a 1 hour nap or a 3 hour nap.  I get very frustrated with how much of my day I have to spend napping and resting.

I can lower my standards, maybe not worry about how clean my house is.  Maybe get more pre-prepped food or ask more friends to help.  I got to that point yesterday when we were having a very late family birthday gathering for Dawn and Leanna. It was just us and them and their SOs, but it was tea party style so, of course there is a soup, salad and sandwich course.  There is the fancy table cloths and napkins and because its cold rainy weather a from scratch Masala Chai tea brewing on the stove.  That's how we show our love right?  By preparing favorite and or requested foods and welcoming our loved ones home to a clean and lovely environment. We should have just gone out to eat, or maybe I could have asked some friends or family to help.  I realized this half way through the morning the second time I had to sit and rest since my hands were shaking too much for me to be safe with sharp objects.  I try not to beat myself up over it but yesterday I got to the point where I could no longer move and was so nauseated and exhausted that I needed to lie down and have everyone help me as I couldn't even get to the bathroom for my stupid pills.

The pills that are a constant flow of chemo in my system, the pills that make me tired and shaky and nauseated.  The pills that make my hands and feet hurt and my skin dry and peeling and cracking and bleeding, and my mouth and lips to have sores and my hair to go straight and fall out.   The pills that make me so tired I can't plan more than one high energy activity in the morning or afternoon and have to take naps. 

The pills that are keeping me alive.

Energy Management means; If I go meet friends for a walk I won't be able to cook dinner for myself.  If I go to an evening gathering of friends I need someone to drive me or make arrangements to spend the night as I will not be safe to drive myself home.  If I do laundry I won't be able to go shopping.  If I go shopping I won't have the energy to cook.  Often my best energy is in the morning, I am awake at 5 am most days and have good energy till around 9 or 10, then I need to lay down and rest again.  Then I have enough energy From 11 till 1 or 2 then have to nap.  Afternoons are often bad for me, after my afternoon nap I often wake not feeling rested, with sore arms and legs and am easily nauseated. By 8 pm I am exhausted and it's a struggle to stay awake until 9.  It's difficult to meet with friends and host a house full with this level of energy.  

 I have tried to stay active and do activities with the Cancer Support Community of Ann Arbor.  They are a fabulous organization and I have attended Zoom group support meetings and taken Tai Chi, Pilates, and yoga classes.  They also host different events and have guest speakers for education on things like energy management and navigating the healthcare system. For anyone who is looking for help navigating their New Normal with cancer I highly recommend The Cancer Support Community of Ann Arbor.  

And if there are any really early birds out there who don't mind meeting at 8 am I have really good energy at that time.  Sadly 1-3 is usually nap time for me and I won't have much energy until 5 or 6 for a short period before I need to get to bed.  I really do miss my friends and family and love you all.  Please don't see my lack of participation in events due to lack of spoons as a lack of interest.  Most of my days I feel very lonely and desperately wish I had the energy to do the things my friends and  family are doing.

A world full of sharp edges and corners

     Once again I have started and stopped writing this blog a few times.  Each time I stopped I worried that I was starting to sound whiny and didn't want to complain too much about the neuropathy from the chemo.  One day I made a comment to someone about my "tools" that I use and carry with me now.  And they really wanted to know more about neuropathy management for a friend who is starting to have problems with it.  It brought home that I am not the only one struggling with these symptoms and I may have some advice or ideas that someone else hadn't thought of before.

**Note, I am not a doctor and neuropathy management should be discussed with your doctor, these are just tools that I find helpful to continue to do things more independently.**

    Let's start with what is neuropathy; strictly speaking it is defined as damage to the peripheral nerves causing numbness, weakness and pain usually in the hands and feet.  To break it down even further, we know that it is actually the brain that interprets these signals received from the peripheral nerves and the brain actually decides if it is pain, heat, cold, pressure etc.  Anything that disrupts the signal along it's route to the brain can also alter the brains interpretation.  In my case the neurologist thinks the chemo I am on is disrupting things at the basal ganglia at the spine and that I am receiving mixed signals.  I am also having some loss of peripheral nerves at the fingertips and tips of my toes, which makes daily inspections for injury important.  But everybody's neuropathy journey is a little different and others may have different sensation issues.

I also have flare ups of Hand Foot Skin Reaction (HFSR) another common side effect of chemo which causes inflammation and increased sensitivity in the soles and palms of the feet.  This can cause increased sensitivity to heat, cold and pressure.

    I need to go over some of my symptoms so the tools and strategies I use make sense, but please don't interpret this as complaining.  When pressed by my doctors I actually have very low pain and it doesn't often get above a 3.  Usually only when I am tired or have been standing a long time on hard surfaces. 

    Let's start with my feet, I am no longer able to walk barefoot unless it is on a very soft surface.  My toes may be numb but the rest of my feet and ankles seem extra sensitive.  Walking on a hard surface without shoes feels like I am walking barefoot on gravel with sharp stabbing pains in my joints and the bottom of my feet.  I have extra cushioned shoes with a wide toe box, and find that most of the time that works just fine for me.  I have indoor shoes and outdoor shoes and much like Mr. Rogers I change to my extra cushioned slippers or shoes when I come in the house.  When in Florida recently I thought I would be fine in the soft sand but had to get water shoes for myself as I had not counted on the rough cement around the pool or the sharp shells in the sand.  Always have back up pairs of shoes in the car.  It is especially important to have properly fitted shoes if you have numbness and can't feel the shoe rubbing and causing blisters.  I accidently wore an older pair of shoes hiking and got a huge blister on my big toe that I didn't even feel until it was several layers deep and bleeding.  I highly recommend getting refitting's if you start to have more pain or discomfort from your current shoe.  Sometimes just getting a new cushioned insert to replace an old one will work.  Sometimes there is a shift or change to the foot that causes a need for a different shaped shoe.  Like my developing slight bunions.  I am going to give a big shout out of thanks to Running Lab for all of their expert help in keeping me in shoes that make it easier for me to continue to get out on the trails, stand long enough to cook dinner or just walking with friends.  I also recommend a good podiatrist to help with foot care as the neuropathy progresses.  Especially if you have any vision difficulties with seeing your feet to inspect them regularly.

    Next for my hands; like for my feet my fingertips are now fairly numb.  I have accidently given myself pressure sores when playing a game on my tablet that required a lot of tapping. I now use a stylus for playing any game, or if I have to do a lot of messaging. I also have difficulty texting accurately and fat finger a lot of the buttons.  Typing on a keyboard is a little easier, but I still find myself having to correct quite a few words I thought I typed correctly. The palm of my hands tend to feel more pain and stabbing sensations that really shouldn't hurt.  Like grabbing a tea packet and the corners of the packet poking into my hand felt like I poked myself with a needle. Or thin metal silverware feels like it's cutting into my hand if I have to push against some resistance. (Think scooping dog food out of a can or using the edge of the fork to cut your food.)  I have tried to tell my brain to quit lying to me, I have said to my brain "look no damage to the skin, these things that I am doing are not actually harming me."  But even though logically I know that it's my confused nerves and brain misinterpreting things, it really doesn't change the fact that it hurts to do many things.  I will also fumble and lose my grip a lot of the time.  Broken dishes, dropped objects and accidently flung objects are just a part of my day and my best bet is to take a deep breath, sigh it out and continue on after whatever broken plate or glass or pickle jar is cleaned up.

The tools that I have found most useful to help with my hands are:  A small silicone can lid, works great for gripping things, opening water or soda bottles or any other serrated lid. Can also be used to grip handles of utensils that are too sharp or thin.  Pop tab can opener, I am not able to lift the tabs to open the dog food or tuna cans.  I use a small metal opener that has a slot for lifting the tab and a hook to help pull the tab.  I also have a small multi tool that works great for prying open things.  I carry a small folding pair of scissors as I can no longer grip the openings of zip lock bags or open packages of many snack items like granola bars and having scissors on hand eliminates a lot of frustration. Especially if I am tired and hungry. So I have my funny little pack of tools which I carry in my purse and I think that makes me maybe a little like Batman. (I'm Batman!)  

Yes I know there are drugs for neuropathy and I am on some of them, however they have their own side effects and I would prefer to take as little of them as possible.  I have also recently been made aware of possible supplements that might help.  I have not tried them, and I would strongly recommend discussion with your doctor before trying any type of "herbal" or "natural" supplement, they also can have side effects or interact with medications you are already on and it's best to talk with a doctor who knows your health history first.

Since first writing this my doctor has had me start a steroid cream for palms of hands and soles of feet which has helped some of the sensitivity.  Again talk to your doctor to see if this would be right for you.

I welcome any other gadget suggestions to add to my batman toolbelt, or if someone has found other strategies for dealing with their wayward nerves please feel free to pass them along.  My goal is to keep doing things I like to do like cooking, hiking, and reading for as long as I can. Here is a picture of some of my tools, left to right is the pop top tab lifter, small multitool and silicone can lid.

For the extra sensitivity of hands I have found cotton gloves with touch screen fingers helps immensely, especially with washing things to protect from hot water layer them under your normal dishwashing gloves.  For the feet I have also started to use socks that have extra cushioned soles and toes, those layered with cushy shoes or slippers work to help standing for longer periods more comfortable.

May you find the tools you need to help you to be the best abled that you can be, love and light my friends!

Heavy skies heavy heart, Brighter skies lifted spirits

Heavy skies and heart

January gloom seeps in

Brighter skies lift heart

I spent most of January feeling "under the hanging sword".  I was dissapointed in December and have been anxious and worried that the lower dose of chemo would not be enough to control the cancer.  The chemo team made it clear that if that was the case they would not be able to go back to the full dose and I would no longer be able to continue the chemo trial.  

I know it is a useless activity to let what ifs spin through my head, but I couldn't help feeling that I should have "toughed it out".  I felt like a complainer about the hand and foot pain and fatigue.  Which were really only part of the reason they lowered the dose.  Not being able to control my high phosphorus was a big factor in the decision.

So if I was snappish at times or more pessimistic, I apologize.  It was a gloomy anxious month for me.  

This morning I started my day with my usual yoga with Adriene but chose to do a cozy, self care more relaxed episode.  It's a long day at the NIH and I didn't want to start it with a tough workout.  I think this helped to set the mood for the day.  A reminder to be kind to myself and those around me.

I have often mentioned the caring and empathetic staff at the NIH and how amazingly supportive everyone is.  I am not sure I have mentioned how supportive and caring most of the patients are as well.  Honestly we are most of us there, being treated for things that can't be treated anywhere else.  We are blessed and being given our last hope.  How could we not be glowing with gratitude for one more day, or month, or week, or year.  There was the time I spotted someone with a Boston marathon jacket sitting outside the phlebotomy lab.  It sparked a quick conversation of running trail verses road and training. His parting words were enjoy your next race!  Today while sitting and drinking the contrast die for the CT scan a patient who had finished and was headed out leaned down to me and said "Good luck dear!".  I could almost cry from the offer of compassion from another going through their own struggles. So many conversations and stories from people around the United States and the world.  Sometimes they are new patients, sometimes they have been getting treatment for years there.  Most people are actually fairly cheerful and enjoy talking about nearby places to eat and other inconsequentials.  Some enjoy trading stories and with those stories they are often mostly of hope.  Hope that they did not have before.  

After today's CT scan we went up to wait for the results of my tests and appointment with the chemo research team.  And as we ate some packed sandwiches I found myself no longer worried.  No longer able to feel anxiety.  Even when I started to gnaw at that anxiety like the comforting bone it has been all month, I found myself feeling warm and calm and at peace.  I just couldn't feel worried.  Maybe it was running into my surgeon in the hallway and being reassured that I had a great surgeon who was ready to take over when I needed him.  Maybe it was having the scan over and results coming soon.  Or just the general atmosphere of hope that I find at the NIH.

As things happen the news was good, the cancer is still stable with the lower dose.  And furthermore the study was supposed to end after 2 years, and now was opened up to be continued indefinitely by any patient having positive results.  Once more I beat the odds and can make some plans for travel, seeing friends, seeing shows.  I do not have to worry about trying to keep my schedule open for surgery and recovery. I also get to enjoy the continued increased energy and hopefully a return to some running and races.  Even the sun came out and there were blue skies when I left the clinic.  The weather was warm and spring like and we could walk to dinner without jackets.

Wishing you more sunny skies than grey my friends.  May you find time to enjoy the things that make life worth living.