Pull Up a Chair

Palliative care

Here is Marc, in uniform, talking to the owner of the apartment we liked best on our last house hunting trip to DC.  It's got great views, lots of light, and plenty of room.  The downside is that it's a fourth floor walk-up.  I came back from the trip not wanting to be pessimistic, but how long will I be able to negotiate four flights of stairs?

How do you plan for the future when you have what I have?  I thought at first I would put the question to my blog readers.  I would post more pictures of the place and ask - "Well, what do you think?  Should we go for it?  Or keep looking for a place with an elevator?"

That was before another doctor's appointment on Friday.  My throat had been hurting.  At times I would feel panicked and worried about being able to breathe.  

My doctor found a new fast-growing tumor, on the other side of my throat than the cancer they had found before.  He took a couple more biopsies, said he is sure it is cancer, and not curable with surgery.  He then referred me to Pallative Care.  Two doctors from that team came up to see Marc and me in his office.

When your referral sheet has numbers for Palliative Care on one part of the paper and hospice on the other, you know you are in a new place as far as care goes.  I had heard of hospice, help for those in the last months of their life who want to die at home.  Palliative care was new to me.

 

 
This is what the hospital brochure says:

Palliative Care is a medical specialty focused on relief and prevention of pain and other symptoms including emotional reactions that make day-to-day life difficult.  The Palliatvie Care Service offers expert advice and support to help you live as well as possible with a serious or life-threatening illness.

While hospice care generally takes place during the last six months of life, Palliative care can happen sooner and is used in illnesses with a high "symptom burden" - like cancer, HIV/AIDS, chronic heart failure, and other progressive diseases.

Wikipedia offers a good comparison to hospice here.  It was sobering to have the visit from the Palliative Care team, but it felt good to finally be able to have someone who understood that the pain meds I had been given were no longer doing the job.  They also were understanding of the feelings of anxiety and depression I faced and tried to ward off on a daily basis.  

Palliative care deals with the psychological and spiritual side of life as well.  It's understandable to feel great sadness in the face of loss of your voice and ability to eat, and to feel anxious when you have cancer and experience shortness of breath.

I have more appointments with an oncologist and a head and neck specialist on Monday.  I also have further appointments with people from Palliative care.  Chemo may be recommended, I don't know.  Chemo isn't curative for the type of cancer I have.  Sometimes it can slow the growth of tumors, but the use of chemo would have to be weighed against possible side-effects.

 

 

 

 Although they wrote down the hospice number for me, no one is telling me to call them yet.  I think I may have conveniently lost the paper with the number on it.  I'd prefer not to think about that for a while longer.

I did decide to start taking an anti-anxiety medication and I plan to get stronger pain meds on Monday.  I also have been lucky to have wonderful support from family and friends.  There is nothing like the sound of someone I love talking to me to calm me down.  

Because it's hard for them to understand me, I've had Marc leave messages for my mom or dad and have them call me back just so I can hear their voice.  At night before I go to sleep, having Marc read to me - hearing his voice - makes me feel better.  Right now we are reading Jon Krakauer's Where Men Win Glory.

I Skype with my kids and have started listing things I'm grateful for each day in a notebook so I can keep focusing on the positive things in my life.  I had a great visit with friends from Chicago that I'll post about soon.

Today we meet with the realtor again to sign the paperwork to put our house on the market next week.  In view of what we found out at the doctor's office, Marc is going to call the apartment owner in DC and say no thanks to the place with the great light, but lots of stairs.   There's got to be another place we can find before May.  

Hardwood floors, high ceilings, nice vibe.  It doesn't have to be wheelchair accessible -  puh-leeze, I'm not ready for that concept yet - but an elevator would be a plus.

 

 I make the most of all that comes and the least of all that goes.      Sara Teasdale

Thanks for the flowers, Laura and Sara!  They were beautiful!

Valentine's Day

Happy Valentine's Day!  Marc and I are in the DC area while he does Navy Reserves.

Have a good day with your Valentine.

Thanks for the roses, Lou and Connie!

Party

Yesterday I posted about the serious issues that come up in my support group.  I also mentioned I was going to seriously try to have a good time at a party last night.

It was my first time at a party since my final round of surgeries.  I knew most of the people who were going to be there,  but I didn't know how they would react to my new voice.  I was a little worried, too, about how I was going to deal with the fact that I build up excess saliva when I talk and don't have the ability to swallow well enough to get rid of it.  I have to carry a cloth or a napkin and spit into it every so often.

I wanted to be light hearted, but I had fears.  I told Marc, "I'm sure I'll be able to be sociable for at least a half an hour or so.   If you want to stay longer, that's fine with me."  He said, "No problem, I'm happy to leave whenever you want to go."

So I got ready.  A picture of the products I use to get ready: 

A few weeks ago, the people at Marc's office sent me a whole box of skin care products for people who have had radiation and/or chemo.  I had read about Lindi Skin, because the company headquarters is nearby in Narberth, PA.  I felt so lucky to get the whole set.  It makes my skin feel great!  Total luxury.  I recommend it to anyone with chemo/rad skin who wants to feel uplifted.

 

Anyway, on to the party... I left with a new dishtowel to spit into (lovely) and a new notebook and pen to write down things people couldn't understand.  

I ended up staying two and a half hours.  Not bad for a first party!  Jim and Joan were great hosts. The only problem was the writing pad.  Most of the women at the party were over 50 and didn't have their reading glasses.  They couldn't read a thing I wrote.  Luckily, I spoke clearly enough that most everything I said was understood, or I could grab Marc to interpret.

I didn't end up drinking through my tube, but my Oxycodone was doing a fine job.  

Note to self for the next soirree:  Bring an extra dishtowel, a spare pair of reading glasses for the visually-impaired, and above all - don't worry.  You'll be able to fit in better than you think.

Thanks so much for the flowers and the magazines, Dina and Iris!

To everyone in the NRC Regional Administrator's Office - Thanks so much for the Lindi Skin box!

Support group

I first wrote about my support group here in July.  72 miles away, 19 older men, two younger men, and me.  There are breast cancer support groups everywhere, but the closest oral cancer group is in York, PA.  Oral cancer support groups are hard to find.  My group is usually all male.  Men make up approximately 75% of oral cancer cases.  

Last night caregivers and companions were welcome so I asked Marc if he wanted to come.  I was a little worried because I knew a couple of the group members hadn't been doing well at the last meeting.  I didn't want Marc to worry about me getting that sick.  To be more truthful - maybe I was worried about myself ever getting that sick.  

Marc said he was happy to go.  It turned out that the two guys I had been worried about didn't make it.  One died last month and the other, only 32-years old, is in hospice care.  His wife is expecting their third child next month. Unlike many of the guys who readily admit to living a risk-factor-filled smoking and drinking life, he was from a Mennonite community.  He had never smoked.  I wish him closeness with his family this month and pain meds that work.  Hopefully he has relatives and friends who will make sure his young kids know what a good person he was and how much he loved them.  Sometimes life doesn't seem fair.

Almost everyone at the meeting had a partner or adult children there with them.  The topic of the meeting was "The Heart of the Matter: Nurturing the Survivor Spirit."  The facilitator, a nutritionist at the York Cancer Center, drew a big heart on the board and asked how having oral cancer had changed people's hearts.

One guy felt humbled by all the support he had received.  I put myself in that category, but I also said that sometimes I feel MAD to still have cancer and side effects from treatment.  I can fall into, "This is too hard - why me?"  A number of people felt that way, too.  Job's plague of locusts in the Bible seemed easier to take on than tongue cancer.   One guy had wanted to die, until his son shook him and said, "I don't want to hear my father saying that!  Are you saying you want to leave me?"  He began to choose reasons to live and credits his son with getting him to wake up.  He feels much more love in his heart now and described the members of the support group as feeling like family to him.  He has been cancer free for over a year.

Sometimes, too, I'll feel so sorry that I have this - like I have let people down who have prayed for me.  Or like I have let family members down by not being able to get well yet.  Like I have let my kids down by not being able to talk with them clearly.  It's irrational - I'm doing the best I can - but sometimes group meetings are good for getting feelings out on the table and being understood.

Many people felt grateful at how much more they appreciate their life after having cancer and how they no longer let small stuff get to them.  Another guy said he had become more empathic and kinder toward others, particularly people who are older and slower.  He said he's been moving slowly while on chemo and radiation.  Everyone got depressed at times and felt that was okay as long as you didn't let yourself stay there.

One guy's wife brought out a cake for him.  It was his 59th birthday.  It does tell a lot about the importance of being with others who know what you have gone through when you want to spend your birthday with them.

All in all, a pretty emotional meeting. God and life and death and anger and love inside of an hour and a half.  I was one of two people whose cancer had come back since the last meeting.  Another guy is participating in a chemo trial in Baltimore and hopes he will be helped.  Actually, I don't know what he thought.  His wife talked for him the whole time.

At the end of the meeting, the guys I have gotten to know gave me hugs and told me they know I'll be all right.  One man who is my dad's age, told Marc, "You take good care of her - she's a special lady."  Marc and I walked out into the parking lot outside of the cancer center and started to cry for a minute.  A cancer support meeting can be a lot to take in.  We were talking in the car, when one of the nurses who had been at the meeting knocked on our window to make sure we were okay.  How do you answer that question?  We are doing well all things considered.

We drove out of the parking lot and quickly put back on the Tom Clancy audiobook we had been listening to on the way over.  Lots of intrigue, a high body count, and a complicated plot that requires full concentration was just what we needed.  Sometimes diversion is the best tactic.  You can't be obsessed with your health and life and death issues all of the time.

Today I'm heading to Longwood to take pictures and then to a neighbor's house for a Friday night party.  There's a time to be serious and a time to seriously be at a party.   This will be my first party post surgeries.  To be continued....

Thanks for the bouquet, Mickey and Marie!

Staying strong

If this life be not a real fight, in which something is eternally gained for the universe by success, it is no better than a game of private theatricals from which one may withdraw at will.  But it feels like a real fight.      William James

 

Lately things have felt like a real fight.  I'm always trying to be strong, and trying to find meaning and something positive each day.  Otherwise, like the above quote by William James, what would the be the point of the theatricals - the adjusting of trachs, feeding tubes, fluid levels and trying so hard to talk again?  Just a private struggle of no consequence?

A theatrical moment came the other day was when I went to have my feeding tube checked.  It required a referral to the general surgeon who had inserted it in November, because my head and neck surgeon couldn't see any signs of infection.  He thought I was fine. I was convinced something was wrong.  My stomach continually hurt more than Oxycodone could cover and food went in more slowly than usual.  

The general surgeon took one look and said, "Yep, that thing is trying to work it's way out of your stomach.  It's halfway out now."  He said, "Hold still.  This will only hurt for a minute."  He then gave a hard yank and pulled the whole tube right out.  OMG!

Theatrical.  No novicaine or pain relief - let's just pull that thing out here in the office.  And all this before ten in the morning during a snowstorm.

My old tube had been held in place by a soft round disc that wasn't doing it's job.  The  surgeon put a new tube in that is held in place by a small inflated balloon on the inside and a round plastic disc on the outside.  Again, no pain relief.  

Fortuneately, my stomach began to feel better within the hour.  

Maybe it is a personal struggle I face - but I still feel compelled to try to make something of it.  What are the most beautiful pictures I can post?  What can I find to share?  Can I find some thought or sight that will help lift my spirits? Is there anyone I can help to feel better while I'm working to uplift myself?

Each day I wake up and say out loud that I'm going to make this a good day.  I know I'll cry over something because things can be hard, but I'll find something positive, too.

Yesterday the victory of the day was learning how to swallow water again.  The last time I tried my neck was not healed enough and water came out of my stiches on the front of my neck and ran down my shirt.  This time I was worrried I would choke - that maybe without any of my original tongue water would go down the wrong way into my lungs.

But, miracle of miracles, the water went down the back of my throat and into my stomach.  My speech therapist who has been helping me was happy, too.  I've been her first client without a tongue and I'm not sure she had high hopes for success.  I managed half a cup of water before I was worn out.  Such hard work that I was sweating!  I didn't think it would be that hard.

I'm going to keep practicing.  If I can swallow water then I can teach myself to swallow other things over time.  In the meantime, until the next victory over my limitations, I've been reading quotes by coaches and fighters.

From Jim Valvano:

Now I'm fighting cancer, everybody knows that. People ask me all the time about how you go through your life and how's your day, and nothing is changed for me...To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.   "Don't give up, don't ever give up."                         

 

And my personal favorite quote by Mike Tyson:

Everyone has a plan 'til they get punched in the mouth.     

 

 That's my gift.  I let that negativity roll off me like water off a duck's back.  If it's not positive, I didn't hear it.  If you can overcome that, fights are easy.      George Foreman

Stay strong!

Thanks for the beautiful flowers, Mary and Chris!

Trip to DC

Marc and I just got back from  a long weekend in DC.  He had a commitment for Reserves and we decided to do a little house hunting in DC as well as spending a night with friends in the area.

Many people have asked when we are going to leave for our big trip or head out in an RV.  I had posted earlier about our plans to travel.  Maybe March or April?  Right now we are trying shorter trips while I recover from surgery and get stronger.

Two big challenges for me with regard to travel and my life in general are speaking and eating.  When we went to Cape May last month I never said a word in the B and B to the manager or to other guests.  I felt too self conscious about my voice.  When it came time to eat, I only ate in the room.  Eating cans of medical formula through a feeding tube had me feeling WAY self conscious.

This past weekend we spent a night with J and J, Marc's college roommate and his wife.  This was our first time socializing with friends since my second tongue surgery.  My first  tongue rebuild from my wrist in November was good for speaking.  I wrote about going to a Christmas party in my neighborhood with it here.  This latest tongue rebuild from my thigh (with over 90% of my real tongue now lost to cancer) makes it very hard for me to talk.  I feel self conscious and unsure at times if a word I want to say will come out the way I want it to.

But surprise, surprise - over the weekend I had a good time visiting with J and J.  There were a few times I had to repeat myself or look for other words, but I felt comfortable at their house.   When we stayed in hotels and went to look at places to rent in DC, Marc would tell each leasing agent I had just had oral surgery and that my speech was temporarily affected.  I then just asked whatever questions and spoke as best as I could. Usually I was understood.  

It takes a lot of effort to talk.  It's often stressful - but I realize I've been harder on myself than other people have.  I miss my voice and the ease with which I could talk to anyone.  Maybe one I day I'll be able to stop comparing the voice I was used to hearing in my ears with the one I hear now.

As far as eating goes, I'll post soon about what it's like use a feeding tube inserted into your stomach.  (I don't have the kind that goes through the nose.) I was worried about using my feeding tube in public at first, but then I tried a cafe mocha at the Au Bon Pain by the hospital.  I sat in a chair with my back to most everyone and found I could discreetly pour my mocha into my tube without anyone really seeing a thing.  I figured that people working at the hospital would be familiar with different medical conditions anyway.

On the trip this past weekend, I tried venturing out even more.  First came a drink at a The Improv Comedy Club in DC.  We found a table near the back.  The club was dark and everyone was looking at the stage.  I casually had a Jack Daniels down my tube while watching the show.  The headliner, Donnell Rawlings, was hilarious.  Even though the place was packed no one was aware of my tube use.  

After that I gradually got bolder.  I had coffee with a can of formula while Marc had lunch at a cool restaurant near Dupont Circle.  Marc requested a booth by saying, "My wife just had surgery and has to use a feeding tube.  Could we have a booth?"  The host said, "Absolutely, no problem."  Marc enjoyed lunch.  I enjoyed lunch.  And no one noticed a thing where we were sitting.

Another night we sat in an out of the way corner table at the hotel bar and I had a martini.  I have never been a heavy drinker and I'm sure alcohol is not good for people with cancer, but those couple of drinks and time out at clubs and restaurants did a lot to help me feel normal.  It's fun to go out, after all.

Here are a few pictures from the trip:

This was my cute date in my kind of hallway - large and floral.  (I wouldn't have been able to do a post without flowers.)  This is the underground at Crystal City.  All of the halls are lined with oversize flowers.  The odd contrast was that most of the people walking back and forth had on army fatigues: 

A picture under my favorite museum, The Hirshorn:

A window view of the Mall in DC from my favorite lounge in the Hirshorn.  The lounge, on the third floor is one of the best in Washington and features large comfy black leather sofas to sink into.  I used to spend time there in high school if I wanted inspiration and art on a weekend.

And then a few "aw, how cute" pictures from a trip to The Frying Pan Farm, a working farm/museum near J and J in Herndon, VA.

The little birds in the barn were hovering over these sleeping piglets:

Our house in the snow when we got back home: