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!

Comments

[Jenny Scott]

Dear Lisa,
Love, Love, Love, Love is coming at you from all directions. You are beautiful and brave. No one knows what the next day holds, but like you've said, you are living with more ambiguity than normal. But how you are living with it! As a constant inspiration to us all. When we were there this past weekend, none of us could believe the energy that you have. Making food, running up and down the stairs for things, going for long walks! You're absolutely incredible.
Thank you so much for continuing to share your journey on your blog. I know you have so many readers who hang on your every word, who are loving you, and praying for you constantly. You may have lost parts of your speech, but you certainly have not lost your voice. I heard it while you spoke to us all weekend, and I hear it in your wonderfully written words.
Love and God bless you,
Jenny

[Connie]

Lisa dear,
As always, you leave me stunned with your heartful insights and perspectives on this most difficult time. A long letter was mailed to you today but in the meantime know that I think of you with admiration and love and only wish I could be with you to give you hugs. You are the best. I love you.
Connie

[Jan Hofmeister]

Lisa,
So wise. So wonderful. And it was good to
hear your voice! Still missing you. Love, Jan

[Liz Hartnett]

Dear Lisa,
Your strength amazes me. You are in my thoughts daily.

Dave and the "guys" are headed downtown to Matt's for the afternoon and evening to play Xbox and watch the Bulls on TV. They are not going out, just staying in and hanging out. I asked Dave to give Matt a big hug from me and tell him I was thinking of you, and him. I hope that the time with his friend's helps Matthew. I know that you would want him to have some fun and not "forget" but perhaps escape for a bit and just be one of the guys. Jim and I often remark what a great group of friends Dave has and Matt can ceratinly rely on them to be supportive even if it is in their usual crazy and fun way!
Love, Liz

[Ann]

Lisa... sending you much love, hugs, support, prayers, pain-deadening-vibes, and strength. While I hate that palliative care has to be part of your life now, I am so glad that they can provide you with some much needed support. Having pain meds that actually work can make such a huge difference in getting through the day to day ups and downs. Good for you for asking for a stronger prescription. And anti-anxiety meds... been there too... they can be such help. I love you, and I love that you are still working on finding all the positives and blessings in your life when there is so much darkness. Oprah once said that when she was having trouble falling asleep at night, she would go through the alphabet and think of something she was thankful for that started with each letter. I've always liked that... maybe you can try it. A-Aunt JoJo, B-bouquets of flowers, C-Connie's shawl, D-Dad, E-Ellen, ....

[ellen]

Hey Seestah,

I'm glad you're hanging tough and also will get the Palliative care help, plus meds that can help you get through the day with less suffering and worry.

While the apt looked nice, I agree that an elevator is a must at this point. I'm making a mental image of a lovely, sunlight filled space that will appear for you, complete with elevator, and maybe even a cute doorman to open the door for you!

Looking forward to seeing you, Natalie et al next week in sunny FLA!

love, hugs,

Ellen

[Barbara Eldridge]

Dear Lisa:
The apartment looks lovely - just a lot of steps to schlep groceries in the best of circumstances. Will be thinking of you tomorrow & trust they'll get you set up with more effective pain medication.
Love & hugs to you & Marc,
Mother

[Rachel]

Hi there Lisa! Great photos as always. I am convinced you could take pictures of anything and make it look beautiful. I still have the pictures you took of my girls right after you moved in!
Let me know when you are ready for a nertz competition and a chance to think of other things.

Hugs!

Rachel

[Dave Yost]

Lisa,
In reading all that you have to say - it continues to amaze Cindy and I - the great strength you have in a time that tests the true spirit of people. There are no real answers - just questions - but to read the truth in your posts - continues to amaze and inspire us.

Dave and Cindy

[Jamie Hofmeister]

Lisa,

I hope you had fun with my mom and the short story ladies a few weekends ago. She said it was a lot of fun. I just wanted to let you know that I have been following your blog for a long time now, and you have taught me so much. Your strength and honesty is very inspiring and has given more so much insight into patient experiences. You help me be a better dentist every day. Thank you!

Jamie

[Joan]

Lisa,
Thank you for spending time with us last Friday; it was great to see you and Marc. Your resilence is amazing. Enjoy your trip to Florida!
Jim and Joan

[Carrie Feehan]

Lisa -

I was told about your site by a quilting friend of your mom's in Red Wing, and just read that you and Marc are looking for a place in DC. Patrick and I are out here - we live in (almost) DC now, in Friendship Heights, and if you are needing any help when you find a place and know your moving day, we are very much there.
Your site is wonderful - your creativity, insights and writing have only deepened and found even more dimension in the years since we lost touch.
Carrie Feehan