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? 

Comments

[ellen]

Hey Seester,

I'm so glad you are planning a trip out West, that will give you a wonderful time to look forward to after this last (!) surgery to get the very last spot. I'm glad at least you got to enjoy a couple days in the comforts of being at home. I am thinking of you, and wishing you great strength to get through this final marathon of surgeries. You are my personal superhero.

love, hugs,

Ellen

[Kathy Morgan]

Lisa,
I just found out about your 2010. I've been reading your blog this afternoon between taking down Christmas, lunch with Dennis, housework, etc. Right now I'm waiting for Bre to come home from school; she's a senior! I loved seeing pictures of Matthew and Natalie. . . and your entire family. The trip to the pacific Northwest sounds amazing! A dear friend of mine has a mother who is an incredible artist, Dianna McNish. She uses driftwood from the Pacific Northwest in each of her sculptures. When she was a girl finding driftwood with her father, he would always ask, "What do you see?" She says her art is an answer to his question. Amazing! She just celebrated 80 years of life and 40 years of sculpting. I know you will appreciate her work. I want to read more and know I should start at the beginning of the year instead of the most current post. Please know that you are in our thoughts and our prayers. I woke yesterday morning thinking about you. Your art and your insight nurtures and inspires, and I missed those days when our son's music brought us closer. Bre just walked in. Hi to Mark, Matthew and Natalie. Always, Kathy Morgan

[Jenny Scott]

Bless you, Lisa, and have a fabulous, fabulous trip! I was just reading Kathy Morgan's post above. Weren't you with us when we went on a house walk at the McNish house right near the Millrace Inn several years ago? We saw her studio and all - I think you were there, but I'm not positive.
Love you,
Jenny

[Jennifer Yakupcin]

Dear Lisa,
Years ago I studied loss and grieving in graduate nursing school and was very struck by Elisabeth Kubler-Ross. I believe she is the writer you make mention of regarding the 5 stages of grieving. There is a quote written by Kubler-Ross I want to share with you --
"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within."

Your physical being does not define you -- it is your beautiful spirit...

After caring for people in all stage of grief and illness over the past

[Annie B.]

I think "I Love You" would about sum up my feelings at this moment. I'm not sure that I can say anything else. You continue to inspire everyone. Go into tomorrow with another positive spin. We'll all be waiting....

[Kathy Tlougan]

Dear Lisa,

Have a wonderful trip, living and healing. That energy inside of you knows you better than any of us. That quote about the stained glass window is so you! We love you and are here pulling for you.
I look forware to the day when you have you first Cappuccino.

Love,
Kathy
Kathy T

[Sue Ferrell]

My dear Lisa,
I recall a quote from Emerson that says, "What lies behind us and what lies before us are small matters compared to what lies within us." Within you, my friend, lies is an ability to see the beauty in seemingly insignificant things, to anticipate with joy what is yet to be seen, and to have overwhelming gratitude for all that you have.
My prayer is for God to make me worthy of a friend like you.
Love,
Sue

[Patty Acri]

Dear Lisa,
We will be thinking about you tomorrow as you undergo your last necessary surgery! I never understimate the power of prayer and I hope you know that there are many prayers being said for you.
Lots of hugs to you and your family.
Love,
Patty, Gregg, Aubrey & Matt

[Barbara Eldridge]

Sweetie:
Hope you & Marc can include Victoria BC & Butchart Gardens in your western tour (passports are required). Mrs. B turned her husband's abandoned rock quarry into a paradise worthy of a Longwood lover!
I found RV travel with friends to a quilt show to be like sailing except that we didn't have to get up to move the anchor in the night.
Love you both,
Mother

[Jan Hofmeister]

Lisa, You lead well; and I will follow your lead,
and embrace your perspective. You are not morbid.
You are a strong, intelligent,perceptive woman(and beautiful!!)who alone really knows what she is battling. My heart goes out to you every time you lose a "part" of yourself. My respect follows with every skillful re-invention or creative adaptation you muster, and eventually master. And if you are tiring of the clinical scene, and want to retain what you have, and move on; I support you. Six weeks on the road with Marc sounds heavenly!
My support, respect, and love, Jan

[Sandy Jelm]

Your own 'true grit' has been beyond astonishing. We are all so very proud of you, Lisa.

"I don't think of all the misery but of the beauty that still remains." -- Anne Frank

Thank you for keeping us all close, beautiful friend.
Love,
Sandy

[Jan Hofmeister]

p.s. It would be so much better if a hug could be sent too! ;)

[Joan]

Lisa - Good luck today with surgery. The trip to the Pacific Northwest is a wonderful idea! You are always in my thoughts and prayers.
Love - Joan

[Ann]

Lisa, I think getting away from the hospitals, surgeries, radiation, and needle sticks sounds like the perfect medicine right now. You've been through too much, and you're right... you need to take a moment to live, love, travel, and experience something new. I love that Marc is able to defer his job... what a blessing. I've always heard the San Juan Islands are absolutely gorgeous - maybe you can add them to the itinerary! I asked a friend of mine about RV's (they recently bought a tow-behind camper), and she recommended reading and asking questions on http://www.rv.net/forums. She said there are a lot of really helpful folks there that can steer you in the right direction for RV's.

[Lisa D]

Thanks so much to all of you for your support, quotes and RV and trip leads!

[Eva Grayzel]

This line really spoke to me:
"I will need to leave some sadness behind in order to keep going forward."

I am forwarding your site to a woman I have been in touch with recently who struggles with her peg tube and lack of ability to swallow/taste after her surgery. Your positive attitude is infectious and gives us all an opportunity to give us all a fresh perspective on our own lives and challenges. You empower readers with the wisdom of how to be grateful for what we have.

Please forge on...for us all!
Eva

[Lisa D]

Thanks, Eva - My heart goes out to her. It can be a struggle at times - sometimes everyday. Hopefully she can find some victories to celebrate at times, too.

[Morgan Humble]

Oh dear, you had an operation that took out 90% of your tongue, and now you're planning on doing an RV trip. That's the spirit! Anyway, I love your hospital room, it's really cute. I love the fish tank, I wish all hospitals have one. Can't say the view is breathtaking, though, hehehe.