Pull Up a Chair

New normal

I'm unsure of what my new normal will be. 

Each day brings challenges and a few good surprises.

I had my second session of speech therapy today.  Today's lesson involved reading lists of words, each emphasizing certain sounds, as well as reading paragraphs.   It was so hard, I got teary-eyed.  Some letters require tremendous concentration and even then sound garbled.  "G" and "J" sounds require the most work, especially when they fall in the middle of a multi-syllable word.

The paragraphs were funny in their subject matter - Hello, Albert Schweitzer and Switzerland! - but difficult to get through.  It can make you feel like a baby to have to learn to read out loud again.  I just have to keep working at it.  I'm told things will get clearer as the swelling continues to go down in my tongue.

Swallowing is getting better.  I managed to eat an entire small pudding cup and a baby yogurt last night.  The most encouraging was this afternoon's venture, however.   My mom and I went to Barnes and Noble.  She got a latte and I got a small can of diet Red Bull.  I had read that fizzy drinks might be easier to swallow than some other things.  I drank the entire can and also sampled my mom's latte.  The latte tasted great.

Being able to sip a drink in public without drooling excess down my chin, and to know that I can enjoy a latte in the future while talking with a friend in a bookstore is such a gift!  I got verklempt at the realization.   Teary-eyed in a good way.   So many things require a new approach and outlook.  Little things can seem like big ones.  I would never have thought that not drooling would be the cause for a high five!

Arianna Huffington was interviewed Sunday in The New York Times.  She said, "I think people love it when anyone is willing to be vulnerable about their own life, because so much out there, in womens' magazines especially is about the pretense of perfection."

Maybe so, but the converse is also true.  After feeling so vulnerable and facing down flaws in speech and swallowing, it was heaven to look at magazines of Holiday fashions in Barnes and Noble.  To just focus on the surface of things for a while - the glitter of new sequined tops, new cuff bracelets with large stones, the latest cashmere sweaters - and, yes, to believe in the pretense of perfection.

 

Rearranging

A friend who is also dealing with cancer sent a copy of a beautiful book of poems and meditations that has been a comfort to her.

The poem or thought below is one of her favorites:

How difficult it is

to be still,

to surrender

my body, my will,

my everyday life

to the sacred mystery,

the miracle of healing,

and to trust

that this breaking open

and rearranging

of my innermost parts

holds the possibility

of new life

at deeper levels,

not as I would choose

but according to

God's blessing and grace.

 

I've been reading this over and over.  For sure, I'm in an in-between state and being rearranged and I don't know what my new normal will be.   Things are going "not as I would choose."   I can only hope that I'll somehow have a deeper new life and be stronger for all of this. 

We all have parts of our life that are not as we would choose.  Even those of you reading this who resolutely believe that "you choose your own reality" can be caught off guard by life events.

Because it can be difficult - may you have strength to move forward with trust and see positive possibilities in whatever you are facing.

Poem from  A Small Steadying Sail of Love by Nancy Gibbs Richard.  Thanks, Heather!  You inspire me.

 

Speech therapy

My chin is still a little swollen, but continues to improve.

I can talk at least as well as before surgery.  Certain sounds are hard - like "th."  My inclination is to substitute "f".   My Elvis imitation would be, "Fank you, fank you very much."   Volume control with air flow feels harder, too, because of the trach.  This will improve when it comes out in a few weeks.

Yesterday was my first speech therapy lesson.  I qualify for home health care so the lesson took place at the kitchen table.  Megan was the insightful and encouraging speech therapist who came over to help.

Overall, she thought I was doing very well so far.  She recommended reading magazine articles out loud and circling words that are difficult for me.   That way we can identify more sounds to work on.  She also said to remember to talk with self confidence and to open my mouth wider when I talk.  This will help me enunciate.

I have work to do in the finesse department, for sure.  The good news is that even at this point I am able to make myself understood in person or on the phone.  If I am making an appointment or something on the phone I just say, "Bear with me, I just had dental work done."  Only rarely am I asked to repeat anything.

Then we worked on swallowing.  I can't tell you what hard work swallowing is for me.  We practiced swallowing water by the sink.  I was doing about five swallows when one used to suffice.   I would swallow and then if I went to talk, the water that didn't go down would drool out the front of my mouth.  Totally beyond my control.  We worked on relaxing and then doing as big a swallow as possible. 

We also worked on swallowing food.  Yogurt seemed to be the best consistency.  She recommended using a small spoon.  A little jam spoon was the best find in the silverware drawer.  I learned to take a bite of yogurt,  work it to the back of my throat to swallow and then get it the rest of the way down with a swallow of water.  I'm able to get a little bit of flavor on the right side near the back of my tongue.

Total intake for lots of effort?  Maybe two tablespoons.  It's going to take a while before I can be off the feeding tube that goes in under my rib.  The yogurt we had in the fridge was fat-free.  Today I'm going to hunt for some high-fat super soft foods at the store.  My bites may as well have a high-calorie payoff per swallow.

Swallowing may always be challenging for me.  My goal is to be able to at least get it to where I can go to a restaurant and feel I could order soup or something soft and be able to eat with everyone else.  To be able to get dressed up and pass for normal - a worthy goal!

Bouquet of the day.

Photo credits:  Bouquet - Thanks, Dave and Cindy!  Scarf - Thanks, El! 

Jam spoon in the silverware drawer - Thanks, Jan!

 

Thanksgiving

Early Thanksgiving afternoon.  We're going to eat around 6:30.  Right now everyone is off in their own rooms enjoying quiet or a game on TV. 

The house doesn't yet smell of turkey or pie. 

It's gray outside.  I think I'll make a fire soon. 

It's an in-between part of the day - just hanging out before cooking.

I feel in-between.  Navigating a new territory of what to be thankful for.  Family and friends, of course.  I'm very lucky in that regard.

Not loving my new trist (tongue/wrist) yet.  So hard to use.  I can swallow liquids a little.

I tried eating a bite of banana bread with it.  A very odd production.  I knew I had put a half-inch cube in my mouth.  I felt a little food in one part of my mouth, then didn't taste the bite or feel the sensation of having anything in my mouth - then found it again somewhere else.  After that I had to check in the mirror to find out where it went next.  Hide and seek dining.

My first session with the speech therapist is tomorrow.  That should help me learn how to swallow and talk a little better.  So far my speaking voice is coming along well.  Everyone who has called today has understood what I've said. 

In my in-between world today, I'm thankful for gradually getting my voice back, the smell of woodsmoke in the fireplace, the beauty of a great bouquet, and my family home for the day. Food, not yet, but there are plenty of people here today to take on that measure of thankfulness.

Happy Thanksgiving!

If the only prayer you said in your whole life was, 'thank you,' that would suffice.  Meister Eckhart

 

 
Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.   Melody Beattie

 

Q: If April showers bring May flowers, what do May flowers bring?

A: Pilgrims!

 

Q: Can a turkey jump higher than the Empire State building?

A: Yes.  A building can't jump at all.

 

 

Follow up appt.

Went downtown Monday for my follow up appointment.   Natalie and me in the waiting area:

I'm still swollen, but looking better than a week ago. 

I got all of my staples and stiches out, a smaller trach put in, and a date for my next surgery.

My final skin graft to repair my wrist will be done on December 10.

This is my new tongue:

It's still too swollen to use well.  If I talk much I bite the sides of it, but I will be able to begin speech therapy and swallowing soft foods before long.  At least you can see it doesn't look too freaky or anything.

I've been learning how to speak with a trach.  I can make myself understood, although I have problems with volume control.  I'm never quite sure how loud what I'm about to say will be.

I'm not sure how much longer I will have the trach, at least until the next surgery on the 10th and they are sure the swelling on my new trist (tongue/wrist) has gone down.

Matthew got in late last night.  I'm looking forward to seeing him when he wakes up soon.  Thanksgiving will be great having him and Natalie home for a few days.

 

Bouquet of the day:  Thanks Dave and Cindy! I took lots of pictures of these in different backgrounds. More to post another day.

Fashion credit: Thanks for the scarf, Lynn!

Visual feasts

It's hard to think of anything inspirational to say, when I would like nothing more than - and am indeed obsessed by the thought of - sitting down to an all you can eat buffet.

Four cans of Iso-source for tube feedings now - all I can eat down the pike!

Enjoying visual feasts instead.  Thanks for the bouquet, Caroline and Jim and Joan!

The last hospital post

 

 

One last hospital post before moving forward.  Tomorrow it will have been a week since I was discharged.  Being "discharged" sounds like getting out of prison.  In a way it was prison.

There were at least two real prisoners on my floor.  One was going through drug detox after a car accident.  I thought at first he might have a mental condition or perhaps a serious case of Tourette's.  I had never heard anyone swear so much and so loudly.  There was always a hospital guard outside his door, which was just across the hall from my door.  One of the first things I learned to request was, "Yes, please leave my door shut."

Another thing I learned to request was, "More pain meds, please."   I think part of the reason it has taken me a while to write about the hospital was that I was succesful in this request.  Some of my stay remains foggy. 

At first "pain meds" meant morphine.  I was on a pump that I could control.  It would dispense a new dose every six minutes.  You could press more often if you wanted to, but the most you would get was a new dose every six.  I became a clock watcher.  Six minutes - press.  Six minutes - press.  It amazes me now to think how important the passage of six minutes became so that I could get fresh relief.

Day Four - the morphine pump came off and they began to give me oxycodone every four hours through my feeding tube.   It was clear to me that this was not helping.  I got it changed to every three hours.  This didn't make it automatic.  Every three hours I would begin a new campaign of buzzing for a nurse, asking them for meds, having them confirm on the computer in the hall that I was authorized meds, and then waiting for meds. 

Once I got pain meds, I would feel almost normal and able to concentrate for about an hour.  I also had to give myself cans of food and protein packs four times a day.  These feedings I tried to coordinate with meds so I would always have an empty stomach for meds, thereby making them more effective.  If given the choice between meds or food, I would have chosen pain meds without question.

The last night of my stay, they turned on my bed alarm.  I was so mad.  Why should the nurses need to know during the night if I had left my bed?  I had made it through the whole week getting to the bathroom and around my room at night with multiple IVs intact.  I argued as best I could with my garbled speech.  They brought me a waiver to sign, disavowing them of responsibility if I fell.  I gladly signed.  Bed alarm equalled prison in my mind.

I always had the TV on mute and rarely slept more than an hour at a time.   The one time I did sleep longer I woke up unable to breathe in a coughing fit.  My trach had to be suctioned out.  I decided it was better not to sleep than go through waking up in panic.

People were always coming in to check on me.  My most dreaded visitors were the Residents at 6:00 am.  A group would come in.  Two would make me cough, and then inexpertly and painfully use suction, while the others took notes.  I learned to work pain meds around their visits whenever possible.

The doctors, of which I had four, would come in one or two at a time after 8 am.

There were also cast of people coming at intervals to check my vitals, clean the room, get trash, get linens, bring food, check oxygen levels, see if I needed anything, take me to Xray or PT, change my IVs, and give me daily shots.  This cast of dozens never offered pain meds.  I always had to ask.  I felt like I was an addict asking for my meds 8 times a day.

This is one more post requiring a "jump."  A few pics at the hospital.  Last call for gory details!

 

Why it was hard to type

I'm teaching myself a new skill on this post: the jump.  I wanted to make sure you don't have to see the following pictures unless you are sitting down. 

My mom arrived today to help out for a few weeks and had to sit down when she saw why it had been hard for me to type.

As you know if you have been following my saga these past weeks, the skin from my wrist was going to be used to build my new tongue. 

I thought that when I woke up, my wrist would already be covered with skin from my thigh.  No.  They covered my wrist with a clear synthetic skin, partially made, I think I heard them say, from "bovine materials."  In another couple of weeks when my wrist has healed from underneath, they will complete the graft in an outpatient procedure.

Thanks, Dad

When my dad heard I was going to have to go into the hospital last month, he called from Florida to say he had found a hotel nearby.  If it was okay with me, he wanted to get a room all week so he could visit me.  He thought a room with two queen beds would be an easy way for my brother to come in from NYC or for Marc to stay over any night he didn't feel like driving over an hour back to the suburbs.

Dad said he had also reserved a second room if Marc and I wanted to come downtown and stay the night before surgery.  He said he was happy to get our room if we wanted him to. This turned out to be a great help, especially when my check-in time turned out to be 5:30 am.

My dad has a way of enjoying life, even in the midst of a hard situation. This summer, when he came up to help me for a week, he would get up early every day.  Before I was awake he would have already headed out to a new breakfast place, read The New York Times on his Kindle, and have started painting my front porch.

By the time I got up and walked outside to see what he was up to, he'd have the Kindle Joke of the Day ready to share with me.

Later each morning, he'd change clothes after painting, and drive me to radiation.  After my treatment, he'd stop by a great deli he had found to to pick up a wrap.  This he would happily eat at home, with a glass of wine, while reading a Kindle book.  Then he would take a nap. 

I took the picture above this summer.  He raised an eyebrow and adopted a bemused expression when I told him I wanted to capture how happy he seemed.   

Every night, he would have dinner with Marc or my sister, watch a movie with me and in his words, "rack out early."   This pic is of my dad and my sister when they came out to help me:

This past week, I looked like this after surgery:

 

I was not the best of  company.  I was on morphine and had seven IV lines going.

Still, after having breakfast at a new spot he had found, Dad came to visit every morning.  He'd sit with me and read me The Joke of the Day or chapters from a Phillip Roth novel he had brought because he thought I might enjoy it. 

He'd leave at lunch time, having found a great new place for a wrap.  This time, a Philly cheesesteak wrap at an Irish pub.  Then he'd go back to the hotel and take a nap.  After his nap he would come back and see me for a few more hours. 

Sure enough, the room he had gotten near the hospital provided a great place for Marc to stay and for my brother as well.  They went to the Irish Pub together for dinner, and then Marc or my brother  would come see me after dinner. 

Marc had cleared out most of his work calendar, but there were a few things he still had to take care of.  Dad made sure they staggered their visits so I had as many hours of each day covered as possible.

Dad, thank you.  For all you do, this post's for you!

P.S.  (The next morning.) 

After I had posted this and headed upstairs to bed, I began to think back a few weeks - to remember.  I had fit the post into a nice package which didn't really tell the full truth of how it was.

Everything was true.  The support, the restaurants, The Joke of the Day.

What I had completely left out was the grief.   When I had first called Dad to let him know that my cancer had returned - or never fully been cured and was back bigger than ever - he didn't just run to check out hotels.  What came back to me was our shared grief - weeping on the phone.  "The world can be cruel - so cruel," Dad had said amidst tears.

It was after the tears that we had both moved on.  Really feeling the sadness of what we couldn't change and then working to change what we could.  It was after the tears that he had done hotel research.  After tears that I had taken more pictures at Longwood.

What I most have to thank my dad for is the lesson of feeling - whatever it is - and then moving forward.  It had worked so well I had completely forgotten about the pre-hospital sadness.

Thanks, Dad.  I love you.

 

Back home again

I got wheeled out of the hospital today, after a full week of people coming in my room to check my pulse.  My cheeks are still really swollen, but overall, I am doing pretty well.  The neck dissections (causes of the swelling) came back negative for cancer.  The margins at the site of the new tongue graft also came back clear, which is good, too.

I thought I would be able to post during my stay, but the web keyboard was too hard for me to use with a cast on my right hand.  Also the screen kept freezing.

It hurts to type now, (my right wrist, where they took skin to rebuild my tongue is sore) but at least you can see I'm on my way.  Tomorrow or another time soon I'll fill in what  happened over the week with pics when they aren't too scarey.