Monday, April 27, 2015

Pink Tongue Days

Monday, April 27th

Today is what I call one of my pink tongue days.

During the first few days of chemo, my tongue turns this odd shade of bluish white. I am sure there is a chart somewhere that tells me this corresponds to my liver, which at this point is stunningly obvious.  I did a Google search to try and find my color, but there are hundreds of charts out there, with some really scary looking tongues.  I didn't look too long, I gave up when my color wasn't easy to find.

After a few days of this pale blue, the color starts to recede to the back of my tongue.  It is gradual, until there is a patch in the very center that disappears down my throat.  By the end of the week, usually the Sunday after I am unhooked, I have the most lovely pink tongue.  It is like the tongue of a child, fresh, pink and clean.

It will last for the week, until sometime after I get my chemo on Friday.

It is a funny thing to me, my new obsession with the color of my tongue.  I have always brushed it in the morning, and checked it out to see how it looked, it's what you are supposed to do, right?   I never really thought about what I was looking for, although I guess a drastic change would have alarmed me, and caused me to call the doctor or dentist.

Every morning when I get up, and whenever I find myself in front of a mirror, I stick out my tongue to see how things are going.  I give my family updates, by sticking out my tongue to show off my color of the day.

It is silly, but it is a way to mark my time.  Not that I need my tongue to tell me whether I am feeling well or not, I can figure that out pretty quickly when I wake up in the morning.  Somehow it gives rhythm to the time between treatments, and the countdown to when I am done.  It is a small thing, and possibly a strange thing to be fixated on, but for now, it's my thing.

Sunday, April 26, 2015

This Time

This round of chemo is not as easy as my last, especially mentally.  After reflecting on why this is, I think I have figured out some of the reasons.  In general, I feel better than with my last round, so in contrast, the days when I don't feel well, seem far worse than when I was in a chemo fog all of the time.  Things can still be foggy now, but in general, much less so.  I am better focused these days, and feel much less spacey.

The last round of side effects were so weird and interesting. With every treatment they would change slightly, giving me something to focus on.  Each time the effects of the neuropathy worsened, it was  in surprising and new ways.  I had to be creative in dealing with each new level of intensity.  There were physical challenges which had to be met with well thought out solutions.  This kept my mind busy problem solving, so it wasn't dwelling on other things so much. My main challenge with this chemo is just nausea.  The solution is to take a pill.  Sometimes it makes me much feel better, and sometimes it doesn't.  Because it is not just your run of the mill nausea, I don't always recognize it right away, and then it takes me a little longer to get myself out of it. 

As the neuropathy from my last chemo fades, I am feeling some of the same effects I had before in reverse.  My fingers and feet have much more sensitivity than they did a month ago, but they still feel weird.  When I wake up in the morning and stretch my feet, it feels as if they are made out of some kind of stretchy but sightly stiff plastic.  Right now both my fingers and feet feel like they are asleep most of the time, but I can feel them, which is heartening after a few months of numbness.

One of the most important things that helped me through the last nine months was writing about what was happening to me physically and mentally.  Even when I couldn't type, and I resorted to drawing  what I was going through, the process was so helpful.  It gave me a goal every day.  When I stopped writing, things seemed to change, my focus changed.  I was trying not to think or feel so much.  I don't think this was very helpful.  If I sit and start to listen again, maybe I will find there are interesting things about this round, and writing about it will pass the time, and before I know it, it will all be over.

Saturday, April 25, 2015

Earth Day

Wednesday was Earth Day.  We celebrated by going to the playground and enjoying the warmth and sunshine.  It is not how we usually celebrate, most earth days we go around the neighborhood enthusiastically picking up litter that is so easy to find this time of year.  Even the well tended houses nearby still tend to have some of rubbish stuck in bushes or imbedded in the earth the yard crews that frequent their houses have not yet discovered.

Earth day makes me a little maudlin this year.  I have always tried to be mindful of why we celebrate this day.  I try to be mindful of the earth year round.  I recycle, and am thoughtful about many of the things I do and why I do or do not do them.  This past year though, I have clearly not been a friend of the earth.  I think of all of the chemicals that filter though my body and out into our waterways, of plastics used in my chemotherapy treatment, the bags, tubes and tubing.  There is energy used to produce these things, to run tests and do the imaging of my body. There are countless ways  I am currently existing on this planet are at odds with what is good or helpful to it. 

I realize that by being a citizen of the United States of America makes me lucky enough to enjoy these abuses.  I am lucky to be born where I am, and lucky that I can just afford the cost to pay for the treatments.

Sometimes, I wonder if it is the right thing to do.  I am really worth it?  I am no head of state, no inventor of life or earth improving technology.  I am not a curer of disease or a farmer.   I may help relieve stress in the lives of a few parents, and hopefully give some children a good, loving and caring start.  But is it enough?  Is the cost of the treatment I am now receiving, not in dollars, but in environmental costs the best thing I could do? Will any of these children look back years from now and say, wow, I'm sure glad Kathy was around to take care of me when I was younger.  Honestly, will they even remember?  I have a good memory that extends back to my early childhood, and it seems to me the things you remember are the things you lacked, not the constants in your life.

Still, this does not deter me too much from the course I have chosen.  It is probably the most selfish thing I have done in my life, and I am okay with that. I know that there are other choices I could have made, to not seek treatment, or to treat in some other way, but I think the one I have chosen was the best option for me.  Just not the earth.

Friday, April 17, 2015

Round 2, Chemo number 4

Eight more to go.  Although honestly it is more like seven and a half, since I have to wear my pump until eleven twenty Sunday morning.

I was fine when I awakened this morning, and felt fine until I arrived at the hospital.  Sitting in the recliner waiting for my blood work to come back clearing me for treatment, I started to feel the slightest bit nauseous.  This leads me to believe that some of this must be psychosomatic in nature, but telling myself this does not help.  It is about the smell of the chemo, the smell of the building and the air inside it, the chair I sit in, the food they serve.  There was no chemo near me, and I haven't felt nauseous in a week, but my stomach started to feel queasy.  I was at an event recently where they served the same types of sandwiches the hospital serves for lunch, and I had to focus myself on not tossing my cookies, so to speak.  Just thinking of those sandwiches makes me want to hurl. And here I'm are just talking run of the mill nausea, not the chemo kind that feels like I have a brick in my stomach.

Since this seems to be the star side effect this time around,  I requested a different anti nausea med from my doctor.  The compazine I was originally prescribed worked well, but had a sun exposure warning. I already have sun sensitivity, and the chemo amplifies it, so I didn't want to add to the already high exposure risk.  I often wear a hat year round, and always wear sunscreen, but my job requires me to be outside for a couple of hours a day in the nice weather.  It is hard to keep covered enough under normal living conditions.  Several of my medical friends suggested I ask for zofran, which only claims to cause dizziness.  My doctor doesn't usually prescribe it with chemo because it can cause constipation.  I have an anti diarrheal drug though, because one of the chemo meds causes that problem.  I haven't had too much of that yet, but I am supposed to keep ahead of it, so this sounds like the perfect solution.  I am hoping that this all works out as well as it seems like it should, but given I am no doctor, I'm sure there are things here I am missing.  It would be nice if psi bands,  ginger candy and a cup of peppermint tea would do the trick.

Something I find amusing about my new nausea med is that the generic version I have is called ondansetron.  One of my chemo meds is called irinotecan, (eye-rye-no-TEE-can), which sounds like a dance to me. Is there a secret message here telling me to get my dance on?

The treatments are easier now, knowing what to expect and what I can accomplish or not while  receiving them, and how I can expect to feel afterward.   I find the hospital atmosphere so weird though.  I may have mentioned this in the past, so if you have any ideas on this, please share.  There are so many people together being treated for the same or similar things, but none of the patients talk to one another.  There was a man there today whom I have seen every two weeks for the past two months.  He often gets his treatment in the pod next to mine.  He was walking toward me as I was heading towards the bathroom.  I looked at his face as he came down the corridor towards me, waiting for him to meet my eyes, so I could say hello, but he just looked past me.  There is a woman who accompanies someone each time I get a treatment, and she sits in the same seat in the same room every time. She is right in my line of vision for many of the hours we are there. She also never looks my way, she is focused on the computer screen in her lap.  It all seems so isolated, like people don't want an intrusion from somewhere else into this very personal journey, and I find this makes me sad.  I admit I don't try too hard to be seen, but I would smile and say hello to anyone who seemed open to it. None of the patients seems to want to make contact. I feel I need to respect that, and not be intrusive, but it feels wrong.

It may be me.  I do tend to be shy, but if I notice someone I pass often on the street, or share the same bus with, I make an effort to acknowledge that persons existence, that we are making the same journey together, and offer a hello at the minimum.  I don't always succeed, but I do my best.  It seems the human thing to do. 

Fortunately, I have Steve who comes most times to sit with me, and some steadfast friends who pop by for a visit. Today my friend Brett stopped by with a goodie bag of things to eat and do.  She taught me a card game called Lost Cities, A daring adventure for two.  It was a fun way to pass the time, and we had such a great conversation through the whole visit. 

This time with Steven, and these visits from friends are a precious thing I so look forward to now.  It is a bit of time I would not normally have in my day, to relax and focus on little else but the person who is sitting with me.  It is a gift of time that I love receiving.  And it has taught me an extraordinary and wonderful way to be giving, that is so important for those who are healing. 

This evening, I am accepting that I will not feel tired for quite some time.  Something in my new drugs keeps me awake.  One of the side effects of the ondansetron is sleepiness, and this could help, but I am not counting on it.  I walked to the hospital, and to CVS on my way home.  I walked to see a JUMP! dance recital this evening, that was a pleasant distance from my house so I feel like I have exercised a fair amount today.  So far the only thing that has helped me sleep with this round of chemo was the thought that I would spend my awake time working on taxes.  I made it just past midnight, which was an improvement over four o'clock the previous two times.  Those are done though, so I'll have to be more creative tonight.

I could sit here and type on for the next few hours, but that might not be so good for you, so I'll stop here, and save some cancergirl tales for tomorrow.

With love,


Thursday, April 16, 2015

Cold Feet

One of the most interesting side effects from my last chemo treatment is peripheral neuropathy.  The American Cancer Society defines this as "a set of symptoms caused by the damage to the nerves that are away from the brain and spinal cord.  These distant nerves are called peripheral nerves.  They carry sensations (feelings) to the brain and control the movement of our arms and legs.  They also control the bladder and bowel."

This specific cause of my tingling fingers and feet was the drug oxaliplatin, which I would receive every two weeks.  As I have mentioned, probably too many times in my blog, this was not always easy to deal with. There was slight tingling in my hands at first, which increased over time to become intense tingling.  It eventually spread to my feet, and was intensified by cold or moving air.  By the time I finished my first round of chemo in December, I needed to be sure I had on double mittens and socks on whenever I left the house.  I started wearing slippers everywhere in the house, except the shower.  If I could have worn them there, I would have.  I would often wear my mittens indoors if my hands started to get too cold.  I had figured out a system for dealing with this inconvenience, and it worked.

Once I finished that chemo, I learned the neuropathy would continue to worsen for about two months before starting to get better.  I thought I was prepared for this, although not really sure to what degree things could get worse.  When I went in to have my ostomy reversed, I found out.  In just a matter of a few days, my hands and feet went from feeling tingly to being completely numb. 

Numb feet are weird to experience, but aside from having to concentrate on balance occasionally, it didn't really seem like that big a challenge.  If I had to drive to work every day it may have been worse, but my commute is walking down my stairs.  That was no problem.  At night when I went to bed, the numbness would creep up my legs, like a numbness knee sock.  It felt weird, but didn't  affect too much, except on the nights I would poke Steve too hard with my toes.  He didn't really like that, but didn't tell me about it for the longest time, because he knew I couldn't feel it. He just lived in fear of my feet.

Numb hands are another experience altogether. There are things you count on your hands for everyday, and you don't think about them for a moment.  Reach into your handbag to grab a pen?  No problem.  You know just what it feels like.  Try it with numb fingers, and you can't tell the difference between a pen, your phone, or any number of things that might be lurking there.  Is that money or a coupon?  Is that one bill, one page, or five?  Everything feels thick and nondescript.  At some point I realized I needed to be extra aware of where I was putting my hands, because I could easily puncture my flesh without even realizing it.  Uncovered pens, open name tags or scissors could be lurking anywhere.

Hot things were also a big concern.  After living life knowing that touching something hot would result in an uncomfortable burn, you would think this would be so second nature. Reaching for a hot pot without a pot holder would not even enter your mind.  Except that sometimes the pot lid might not be too hot and it can be quickly grabbed off unaided.  What if the pot holder slips and you don't realize your skin is in contact with a burning hot handle right away.  Imagine having to remind yourself constantly that even though you can't feel it, it can still hurt you.  I would need to remind myself every time I was cooking to use a pot holder, even if I thought it was something that wasn't too hot, just in case. There were numerous times I had to stop myself from reaching for something hot with my bare hands. I understand why this is such a concern for older people now.

There are so many fine motor skills that are not exactly impossible, but hardly seem worth the time or frustration to do.  Button buttons?  A zipper is better.  Jewelery clasps and earring backs? The unadorned look is just fine.  Cutting fingernails?  How about a manicure from a trusted partner or friend. Typing?  Give yourself twice as much time.  Hand sewing?  Don't be ridiculous!

At this point today, I am three and a half months out from my last oxaliplatin chemo.  I have made it though the worst of it, and things seem to be slowly but steadily improving.  Dr. Safran says the nerve damage should be all gone by the start of summer.  Sometime in the last month I realized I could feel my two hands as I held them together, a sensation that I hadn't felt in two months.  I can type as well as I could before I started chemo, my fingers rarely drift now, and my speed is about where it was before.

Yesterday when I took off my socks before bed, my ankles and legs started to feel itchy in that way skin does when it is released from close fitting clothing.  I reached down and started to scratch before it occurred to me that I was doing something I hadn't done in months.  My legs were feeling itchy, actually FEELING itchy! My fingers, as they scratched the pattern left on my skin from my knitted wool socks, were feeling the bumps and indentations.  I scratched and rubbed, enjoying this sign of sensation where there hasn't been any for a while.  Come mosquito bite season, I may consider this an annoying milestone, last night, I enjoyed every second of it.

Wednesday, April 15, 2015

Wednesday, April 15

It has been a month since I last posted on my blog.  It saddens me to think I have let so much time pass.  I had been working so hard for so long to get caught up to real time, and once again, I was there.  I was all caught up.  And then I stopped.  I stopped drawing, I stopped writing.  In the past, even when I wasn't posting, I was still writing almost every day, putting things down in a journal to be re written at the appropriate time.  This time, I stopped doing everything.

I am not sure why this happened, this sudden break in time. You would think after writing almost every day for eight months, this well established pattern in my life I would not easily be let go of.  Somehow, it wasn't that hard.

When I began the second round of chemo treatments in March, I went into it feeling very different than I had the with the first round.  Back in July, I was weak and not feeling very well.  Going through the chemo was something I needed to do in order to get back on a path of wellness, of living.  If I didn't do it then, there was not going to be time for it later.  I probably would not have survived much longer, since my liver was in bad shape, and there were signs that the cancer from my colon was trying to spread to other organs in my body.

I did what I needed to do, because I didn't want this to be the end of my timeline, the end of being with family and friends, the end date of my existence.  We might not always get a chance to have a say in when and how we go in this life, but given the possibility of a choice here, I decided to go with my most survivable option, chemo, and make the best of it.  I waltzed through the months in a chemo haze, observing the changes in my body and mind as best I could, trying to understand how this happened and how I was going to get though all of this.  Writing it all down was proof that I was living, proof of my existence.

In January, when my colon was repaired, I still focused on healing.  I was glad to be internally reconnected once again, but the healing part seemed to drag on. The timeline may have been similar to when I first had the ostomy operation, but it seemed longer.  Now, it was cold outside, the days were shorter, and the side effects I had been experiencing from my first round of chemo intensified.  I knew this would happen going into the operation, but to have to live with the effects day to day, was harder than I expected.  It is not that it is really difficult to have to give up typing, or no longer having a choice about wearing mittens or slippers, but the amount of mental energy it takes to accept change is surprisingly large.  Even when you feel like you are breezing through things, there is a quiet voice inside you criticizing you, saying you are not doing as well as you think, or making you feel bad for not doing better, or being a baby or a wimp or any number of other things. 

Instead of succumbing to that weight threatening to pull me down, I decided to take things in a different direction.  Rather than struggling with numb fingers and trying to write all of those thoughts down, I would try to illustrate them.  The drawing was meditative, and the energy needed to focus on what I was doing left little for the self criticism tring to echo in my brain.  Because my art skills are not in drawing, and my hand was numb from the chemo, it took an awesome amount of focus and will to draw and then write out the dialog.

By the end of six weeks, at the beginning of March, the incision from my ostomy reversal was healed enough to start the next round of chemo.  This was very hard for me, because by this time, I was feeling very well.  Sure, I had a big scar across my belly that still felt pinchy at times, but my head was in a good place, and for the most part, my body felt pretty good too. Certainly, chemo was going to upset this balance.

When I visited Dr. Safran, we talked about my reservations.  I was not sure why I needed to do this round of chemo.  It was explained, and I understand why, but I was still nervous about it.  The side effects sounded much worse than my last batch, and I was full of worry.  After the first treatment went fine, I was nervous about getting more.  I had no problem talking about this to my nurse Faye, Meagan, or Dr. Safran.  They very patently have worked to allay my fears,  explaining every seemingly rational and irrational thing that pops into my head.  The bottom line is that this round will assure us that all the work we did in combating the cancer cells in the last round sticks.  Most likely, I will be okay, and most of the side effects I have read about will probably not be a problem for me.  I will probably feel nauseous, and I might get diarrhea.  My hands and feet should be back to feeling normal by the summer.  As I write all of this, it seems so simple, so easy.  But somehow in my head, it is not.  Maybe, writing all of this down is what has missing for me here.  Could it be that the one thing that has been helping me get through all of this has been writing, and by not doing this for the last month has made me feel worse? It is like a magical incantation I whisper to the universe, and once the words are released, it makes things go better.  Already, life seems better.