Pull Up a Chair

Queen up!

Lucky me!  I just got the new Ashro catalog in the mail.  

Along with the catalog was a card with the words:

Okay, Lisa....Queen up!  Love,  Marvin and B.J.

Along with the card was a fabulous caftan and scarf.  I love feeling like a queen!

I know the scarf is supposed to go around my hair, not my neck, but a queen has to have a trach cover!

The catalog said the clothes are all about "keeping you fit, fierce and focused!"  I felt fine, fierce and happy, too.  Thanks, Marvin and B.J.!

 

P.S.  Marvin is the reason my brothers and sister and I get together for reunions every other year.  We copied his family's way of alternating who hosts reunions.  Thanks, Marvin.

Nothing like Earth, Wind and Fire back in the day.  B.J. and Marvin, this one is for you.

 

Trip to Cape-come-what-May

On the beach in Cape May for our 25th anniversary:

I wish I could say that my life of increased ambiguity (since my Clint Eastwood post) has been one that I've been able to wholeheartedly embrace and accept.  

Some things are difficult for me to come to terms with.  It's hard to make myself understood when I speak.  I lack the ability to make certain sounds.  Just having a conversation can be like trying to bench press over 400 pounds - it can feel impossible.   Gradually, however, I'm learning to play synonym tag in my head while I'm speaking.  When I know I'm about to need to say a word I can't pronounce, I reach for alternative options I can say.  I ask my brother, "How's your daughter?" instead of "How's Gigi?"  'Gee' sounds are a no-go.

Not being able to eat regular food is also tough.  I may be able to swallow at some point, but my neck has not yet healed enough to practice.  When I swallowed water in the doctor's office, water came out of the stitches under under my chin and ran down the front of my neck onto my shirt. So surprising and freaky-ick!  Until I heal, I could be an entertainer at a Ripley's Believe It or Not location.

While on the subject of odd factoids, the noise my trach makes when I walk out in the cold embarrasses me.  It sounds like a Canada goose honking noise when I breathe.

And yet, there Marc and I were after 25 years, still trying to have a good time for our anniversary.  There is so much going on we are both seeing counselors.  We have things to work through, to be sure, but we are still committed to each other and to finding new ways to move forward.  We wrote statements for each other about how we commit to cherishing the other person and to finding new ways of appreciating each other in the months ahead.

This was my cute date in front of the Queen Victoria Inn where we stayed.  We had the two-story carriage house on the side by our Prius.

The house worked out perfectly.  The lower level of our suite was like a cozy library/living room with a fireplace and flatscreen and comfy sofa and chairs.  We had a kitchenette and plenty of room.

Because going out to a restaurant wasn't going to work with me on a feeding tube, we had dinner in the room by the fire.  I used my formula cans and we heated up a dinner brought from home for Marc.  The decor was beautiful and we had a good time.  Different than a restaurant, but I can't say I enjoyed myself any less.  

Upstairs was a beautful bedroom with an angled ceiling,  a spa tub and a chaise.  Happy anniversary to me!

Walking around the neighborhood by our B and B was beautiful.  All kinds of old houses and inns.

All these were within a block of the beach and our place.

 

What my cute date, or as my friend Beth calls him, "The Huz", wrote for me on the beach:

"The Huz" sounds more studly to me than 'hubby' or 'spouse'.  Marc is doing his best to be supportive of me.  I'm doing my best not to lose my sense of humor and to continue to recover from surgery.  I should add that Marc can understand me pretty well when I talk, which is a help.

We are going to take a trip to D.C. next weekend, another short trip as I continue to heal.  Another practice run before we do a longer RV event.  We are working together to build new adventures and ways of spending time together.  I would go back to Cape May in a heartbeat.  It's amazing how you can have a good time when you get creative in the face of limitations.  Come what may.

 

 

Here is a quote my neighbor Vicki sent:

In the depths of winter, I finally learned that within me there lay an invincible summer.    Albert Camus

 

Thanks for the amazing tulips, Bob and Wendy!

Anniversary

Today it's my twenty-fifth wedding anniversary.

We are headed over to Cape May to stay in a bed and breakfast for the night.

More news soon.

Thanks for the flowers, Jeff and Joanna!

 

Channeling Clint Eastwood

If you want a guarantee, buy a toaster.       Clint Eastwood

 

My biggest compliment in the hospital came from a cute younger Italian doctor.  His name was Tony.  "Mrs. Dapas," he said, "you are one tough chick - you know that?"  I don't know what was happening when he said it or what had been going on that day, I just took in his comment with a smile and said,  "Thank you," as clearly as I could.

Today I'm channeling my inner Clint Eastwood.  I'm being as tough as I can.  Yesterday, the doctors said that the one area above my larynx is still showing some small spots of cancer.  They don't feel future surgery would be of any help.   I can talk to oncology about possible chemo, but usually cancers that prove to be radio-resistant are also chemo-resistant.  At any rate, chemo is not a cure for what I have.  Chemo could possibly prolong my life by months to a year if tumors were to grow or spread to other parts of my body.

There is no time line for all this.  No "months to live" chart on someone's office wall.  Right now, in fact, there is no measurable amount of cancer that they can even see on a scan.  They can only go by how fast it has grown in the past.  It has been an aggressive form of cancer in past months, but still - the bottom line is, they don't know.

We all want guarantees, cures, reassurances, and freedom from ambiguity and doubt in our lives. Hell, I would love a guarantee that everything will work out.   But over these past months, every different doctor until now has said, "What you have is highly curable.  We'll cure it."  I've heard that sentiment over and over from radiologists, ENTs and surgeons.  And they didn't know jack shit about what I had.  (Wouldn't jack shit be something Clint would say?)

Now it's another day.  I'm not "curable" in their eyes, but I don't have much cancer in my body either.   I have no guarantees.  What I have in my favor is that I am tough.  I'm sure I will cry huge tears from time to time and feel hopeless and afraid.  I'll pull myself out of those depths again and again, though.  I have so much support around me, from family and friends that it would be hard to stay down for long.  And I've seen in a couple times of emergency that there is nothing like a shot of Jack Daniels down my feeding tube to change my outlook.

If you see me, it's just another day.  I'm recovering from surgery, planning trips and taking pictures.  I'm just tolerating more ambiguity than usual.  I've had several Skype sessions with a therapist in Florida who does energy work.  I'm getting a Vitamix blender so that I can make fresher combinations for my feeding tube.  

The Vitamix will come with a guarantee.

Rich, Friday, Carly and Ian -- I love the flowers, thanks!

Back home

The flowers above were in the chapel at the hospital.

I would walk down to the chapel every day at least once.  It was a departure from the rest of the hospital, with dark wood-paneled walls.  It was very quiet, and very cool in temperature.  My room so often was filled with beeping sounds from my equipment and that of others on the hall and my room always seemed too warm.  The chapel was a breath of cool, fresh air.

There was equal billing for the Star of David and a menorah with a cross and Jesus in the early 1960s stained-glass window.

I found random notes tucked in the bible.  "Dear God, Please heal my arm and send me $125,000," read one of them.

Leaving the chapel was a challenge if I was by myself.  The door was wood with stained glass insets. It had been made to look like an old Gothic castle door and was incredibly heavy.  There was no way most patients could have opened it.  I never saw another patient in the room the whole time I was there.  I would pull the door, stick a foot through, and then use my hands, one hip and my body weight to get the rest of the door behind me.  I always made it out.

And I have made it back home again!  I was greeted by a couple of beautiful bouquets I'm going to take photos of today.   I've been able to sleep a little more at night for once.  My focus is on healing.

Yes, hopefully they got all of my cancer during the last surgery, but I won't know their assessment until tomorrow.  I have my hands full to heal from the treatments.  I'm able to talk a bit, but will need speech therapy to make myself understood.  I'm learning to substitute words mid-sentence, replacing a word I can't say with an alternative word made up of sounds I can say.  At least I can talk a little.  For a while there, I hadn't been able to make even a sound.

My face is still swollen and my legs are sore by the incisions.  I have to say though, what needs a boost most is my mind.  I read through past posts I had written and poems included in this blog and managed to cheer myself up a bit yesterday.  Remembering my own advice was helpful.  Re-reading how much I went through recovering from surgery before made me realize I can do it again.

I've also set up an appointment with a counselor.  Talking/writing with someone outside my family will give me new insights as well.

So - more photos to take today, an appointment with a counselor and RV sites to check out.  Travel plans are still in the works.

 

Don't worry about the world coming to an end today.  

It is already tomorrow in Australia.     Charles Schultz

 

Hospital

The past week was a long one in the hospital.  I often had a hard time working with the wireless system there so I didn't post or email much.

This is me walking the long hallway to my "office", a pink bench at the end where I would go when the room got too small.

There was a city view and expanse of sky.  Walking kept me from feeling as restless or panicked at the long days and nights.  

 

View out the window:

Another scenic spot... The fish tank.

Posing with drain bags, IV pole and fashionable layered gowns.  One worn forwards, the other backwards for cover.

I was able to retain my sense of humor most of the time, but sometimes the skies seemed really dark.  My last graft had enabled me to talk well after a month.  I was swallowing and eating soft foods and was starting to feel energetic again.

My latest graft doesn't work as well - more of my real tongue is gone, too.  Now 90%.  My legs have long - over a foot long - stapled incisions running up each thigh, where veins and muscles were taken out to build another replacement tongue.  My forearms and hands are bruised from IV lines and blood draws.

Marc and I were making plans for our next months together and packing to leave the hospital yesterday when word came from the doctors that pathology had found a remaining cancer spot on one side of the back of my tongue.  It had showed clear on frozen section during the surgery, but further analysis showed a small area that they want to take out.

They want to have me come back in tomorrow for surgery, staying up to three days after having this new spot removed. Since it's so close to the last surgery, and my neck and legs are still recovering, I am inclined to go for it and then call it a day and go travel.

There comes a point of diminishing returns with a cancer that has proved invasive/evasive so far.  At what point do you start to lose pieces of your self along the way and cease to LIVE - at what point do you just exist?  If you have faced the loss of your voice, the loss of being able to eat out with friends, the loss of your looks - after a while that is enough 'treatment'.  You have to LIVE and not have every choice about postponing death.  

This post may seem morbid or too heavy.  Yes, of course, I have hope.  I am going through, however, sadness over the loss of parts of my life.  A dear friend wrote me a letter (with her permisssion I want to post excerpts another day) about the stages of grief that one goes through at times like these. - Denial, anger, depression and, finally, acceptance.

To be able to accept your situation you have to go through some time in which you aren't there yet.  One time I was just walking down to my "office" at night and happened to pass the coffee machine at the nurses station.  My eyes welled with tears.  I haven't had coffee for months.  I thought I was over it.  But I used to LOVE coffee - love that coffee house part of my past.  I can take my new laptop and go to a coffee house, but I can't swallow anything there right now.  I hadn't realised how sad I was about that "tall Americano" part of my life being over.

Other things are bigger, like the loss of being able to eat other than out of a feeding tube.  My swallowing will improve with my new graft, but it will never be the same.

Having a conversation will never be the same. Paradoxically, some conversations have deepened.  Marc and I have had some conversations where he talks and I write that have made us closer than I ever would have expected.  You have to sit right next to someone to read their words.  The usual rhythm of speech is no longer taken for granted and there is space for new insights.

One night we were working through questions about our future and just being in the moment led us to a surprising (for us) plan.  Marc is going to defer his start time to his new job in D.C. so we can take at least 6 weeks and just travel.  Neither of us has ever been to the Pacific Northwest.  We both like Santa  Fe.  We can see renting an RV and heading out.

 Tomorrow I head back to the hospital after a wonderful couple of days at home.  Marc and Natalie and I went to see True Grit last night.  I loved the movie, then started crying on the way home, just overcome with sadness.  An hour later - and manymanymany tissues - I felt better and still do.  I know every now and then I will need to leave some sadness behind in order to keep going forward.

I may not have a post for the next few days, but picture this smaller piece of tissue at the back of my tongue being removed without harming my ability to swallow.  Know that while there have been times recently that have been hard for me to take, Marc and I are also planning a roadtrip just for the adventure of it.

Thanks to everyone for their continued support.  

Does anyone have RV recommendations? 

1/1/11

 

I have a new lap top (which I LOVE) and am feeling well enough to blog again.  I've had a lot of family support, but very little sleep.  Nights are long when spent in a hospital.  I had the foresight to ask for pastoral care before my surgery.  At least I could talk then.  The same person came back by to see me again tonight.  I asked her what prayer she knew that many might feel helpful in the hospital.  She said one that helps her is psalm 143:8.

Let the morning bring me word of your unfailing love,

For I have put my trust in You.

Show me the way I should go,

For to you I lift up my heart.

I have put my trust in my future and tried to be as strong as I can be.  Going ahead with a life where speech may never again be possible requires facing life head on and asking many times a day for inner strength to go forward.

I've gotten the go-ahead to walk around where ever I want to go by myself on the floor.  That's HUGE here. I have long cuts on each thigh where they harvested skin and muscle for my current tongue graft.  But my legs are still working fine.  The reason I may never be able to talk is that so little of my original tongue remains.  Only 10% left.  The new tissue is mostly to take up room.  I can't make a sound yet. 

I miss talking on the phone.  Its hard to hear someone and not be able to talk to them back.  I learned today how to Skype though.  I can hear Natalie or Matthew and text them back - and I can type faster than writing.  And we can see each other like we were having a conversation in the same room.  Many people I know Skype - so texting and Skyping instead of phoning will get me through.

 On one of my walks today I heard a guy talking to his mother and the staff about her living will.  It seemed like it was close to her time to go and he was hoping he was doing the right thing.  The nurses here deal with many issues.  Most of the people on this floor are really old.  I think it would be hard to take care of them at times.

I don't know when I will be back home yet.  More news soon.

 

 

Cancer-Free in 2011

 
We rang in the new year in style from the intensive care unit of the Jefferson hospital. We toasted to a cancer-free 2011 and beyond (pictures will be uploaded later this afternoon). We drank champagne from Solo cups and we donated a bottle of sparkling cider to the hospital staff. Dad also brought in some party balloons for the celebration.

Two of my mom's siblings, Ellen and Rich, joined the celebration in the hospital. Ellen flew in from Ohio the day before and Rich drove down from New York earlier in the day. Mom was really happy to see them. Obviously we would have all liked to see each other under different circumstances, but it was nice having family together.

 

Mom is looking much better. Much of the swelling is diminished, she has more color in her skin, and she appears less uncomfortable overall. She was able to get out of bed and walk the length of the hallway twice during the day. Shortly after midnight she was transferred away from the constant beeping of the ICU and moved into a standard care room. She also doesn't have nearly as many tubes connected to her as she did a couple of days ago.

When not being attended to, Mom spent time watching SNL videos, listening to David Foster Wallace short stories, and reading her new Natalie Portman covered Vogue.

I have to fly back to Chicago tomorrow, but now that Mom is in standard care, she may be able to use her laptop. Thank you all for your comments and continued support. Happy New Year!

- Matthew

 

Complications

I was asleep when the house phone rang at 2:07am this morning. Dad answered the phone. He knew who was calling. He knew something was wrong. No one calls a house phone in the middle of the night unless there is a problem.

Dad and Natalie came into my room and woke me up to tell me the news. To put it mildly, I was very angry that my sleep was being disturbed. Dad started explaining things in detail. I was having trouble following what he was saying because I was so sleepy. I barked at him to get to the point. He said that Mom had to go back into surgery.

What Dad had been trying to explain to me was that a clot had formed in the main vein carrying blood back from the reconstructed portion of Mom's new tongue (called a "flap") and blood was pooling inside. Surgery had to be performed immediately in order to try and save the tissue. The head surgeon, Dr. Ryan Heffelfinger, was called back in to reconnect the flap. Luckily the clot was discovered early enough that the tissue was still healthy. In the vast majority of similar cases, the flap tissue does not survive.

Attaching thigh tissue to a tongue is a long and tedious process in which nerves and blood vessels must be sewn together. It requires a talented and experienced surgeon (imagine trying to sew two angel hair noodles together end-to-end, and you'll have some idea of what microsurgery involves). Mom was in surgery for another four hours (approximately 2:30-6:30am) while the flap was successfully reconnected. Dad made sure to thank Dr. Heffelfinger. It had been a long 24 hours for him and his team.

It was a scary night for Mom, but she is doing well now. Other than dealing with standard intensive care procedures, we spent the day opening letters and gifts (thank you to those who sent in cards!), talking with family, combing Mom's hair, and watching MythBusters. Mom is really excited to see her sister, Ellen, who flies in tomorrow.

We all are relieved that everything is back on track despite the complications early this morning. Thank you all for your comments and continued support. Thank you Holly B. for the amaryllis.

- Matthew

 

Glossectomy

It's been a long day. Dad, Natalie, and I left the house around 5am and sped to the hospital to see Mom before she left for surgery. Thankfully we were able to spend some more time with her before she went into the OR. It was difficult for Mom to try and mentally prepare considering the rapid 24-hour turnaround between her MRI scan and the surgery. Despite the disorienting suddenness of everything, we were all relieved and extremely grateful that the surgery could take place today. At the rate the cancer was spreading, waiting any longer could have been devastating. It really was a blessing that things fell into place such that the surgery could be performed today.

As for the surgery, it was a long and intricate procedure. Mom went under around 8:00am. The surgery took over 11 hours to complete. Approximately 90% of her tongue was removed. The surgeons tested the remaining tongue tissue extensively, and all results indicated that the cancer had been completely removed. Tissue was taken from her thigh and used for tongue reconstruction. A sensory nerve was connected from the reconstructed portion to the remaining part of her tongue. 

Looking ahead things will be extremely difficult, and nothing is certain. Talking will be limited, and will take continual practice to improve. Mom will not be able to swallow at first, but chances are okay that over time she can relearn how to. The trach tube will remain in for at least 1-2 months, and the feeding tube will indefinitely be her primary source of food/water intake.

All things considered, Mom is looking great. She was very uncomfortable at first when she awoke; it's scary, psychologically, breathing through a straw in the neck. Now that she has more medication and is sitting up, she is looking more at ease. She is communicating with a notepad and pencil. In a couple of days, she'll be back to blogging on her new laptop.

I told her that all of the pain she is experiencing will be worth it when she is recovered, cancer-free. I told her to think about visiting my apartment in Chicago and all of the things we'll do together when she visits, including walking along the lake. That made her smile.

Thank you for all of your continued love and support. It gives Mom strength. Thank you Joan Smith for the beautiful orchid.

- Matthew