Happy: A Quest for Life After Death

Saturday, January 01, 2011

Hospice


It was not a happy day when Mat, Dr. Dave, and I decided that there were no more cancer treatments worth trying. Last year alone Mat tried three different chemotherapy regimens, three rounds of radiation, had two hospital stays, and two bone fractures.

There were one or two chemo options to try, but we were looking at Phase I clinical trials with no track record outside a petri dish.

Not very attractive.

So Mat switched to hospice, where the focus is on comfort rather than cure. Hospice is a service that helps people who have six months or less to live to spend their remaining time at home rather than in a hospital. Mat has a primary hospice nurse, Klara, who we like and who seems competent. She visits at least once a week, orders all of Mat's prescriptions, and coordinates other care that he needs. My only complaint about her is that she's tall, blonde, stylish, and thin. Ugh.

We also have a chaplain and a social worker, and Mat's prescriptions are delivered to our door (I do NOT miss the twice-weekly trips to the pharmacy). We still meet with Dr. Dave every other week, which is comforting.

Although Mat has only been on hospice for a few weeks, we are already pros. We know, for example, that although most of them are competent, some of the hospice nurses do not have the sense they were born with. Leo, for example, sat like a bump on a log in a chair in Mat's room, saying nothing for over half an hour. Eventually he did ask some questions, but they were all directed at me, as though Mat were 5 and I were his mother. "When did he last take his pain medication?" and "What has Mat's activity level been today?"

Ginny talks to us both like we are 5. "This pump," she said today, gesturing to the pump that delivers Mat's pain meds intravenously, "has a LOCK-out feature (can you say LOCK-out feature?). It is set at level ONE. I need to change it to level TWO."

Mat owes his sanity to Michelle, who spent the night at our house, periodically talking on the phone to Mat's palliative care doctor and furiously re-programming Mat's pump, helping to end a four-day-long pain crisis.

Apparently she arrived at our house from the tropics, however, because she set the thermostat -- there's only one in the whole house -- so high that the temperature on the second floor reached 82 degrees. I went downstairs from our blissfully unheated attic to fetch Michelle at 4:30 a.m. for an intervention. As I walked past the kids' bedroom, they were both awake, flopped over their beds with their shirts off.

"Mom, we're SO HOT. We can't sleep. Can't you turn down the heat?"

The whole four-day episode was a bit of a nightmare, but we're glad Mat didn't have to spend that time in the hospital, even if we were a little toasty overnight.

Hospice is hard to get used to. No one draws Mat's blood anymore to check levels of liver function, kidney function, or any other kind of function. There are no more scans scheduled.

Some things never change, though. Like the fact that we are the cutest couple in the UNIVERSE. And the fact that we have some of the best friends in the world.

19 comments:

Angi said...

You probably don't remember me but I think you are both amazing. Simply amazing.

And the cutest couple in the universe to boot!

Jenn Jenson said...

Every time I see a new post in my RSS feed, my heart sinks just a little bit, thinking of you and Mat and the boys.

I'd reconsider religion if I thought it would help; And even though I don't share your faith, I'm grateful for the support you get from the church.

Thinking of you every day. Love you, Jenn

amydear said...

Yep, so cute. And I'm glad you still have your stellar sense of humor. I had a roommate from Arizona who set the thermostat at 88. Ugh. Hated her. I'm sure Mat has eyes only for you, despite the tall, thin, blond hospice nurse. I hope he is comfortable and that you two have as much time as you need with this whole hospice thing.

Ayres Marques Pinto said...

It's simply great ths spirit of this blog and the way it's done! My first internet gift for 2011.
Ayres Marques Pinto

WinnyNinny PooPoo said...

I'm pretty sure you ARE the cutest couple in the world!!

Hospice was a blessing in my life for a loved one. Yes some are like lumps on a log, some are very well versed, and some call everyboday sweetie. But the relief of not having to personally coordinate all that care was worth it. And I think we got better pain treatment.

Praying for pain free nights and days and plenty of family time.

~laurie said...

Thank you for the update. I've been thinking of you both lately.

I hope you'll find hospice a blessing as we did with my mom. It is nice having them come to you for a change! And it frees you up for more quality time together instead of running around in a car!

I wish you peace and God's blessings as you travel this leg of your journey together. I will hold you both close in prayer.

And yes, absolutely in the entire UNIVERSE! :)

~laurie anglen

Steve Finnell said...
This comment has been removed by a blog administrator.
EmilyCC said...

Cutest AND awesomest! :)

Oh, my friend, I'm glad to hear the benefits of hospice for you and Mat though it makes my heart ache.

I love you and am keeping you and your family in my thoughts and prayers.

Anonymous said...

Thank God for Hospice, when it's helpful, and your sense of humor!
Love ya and storming heaven,
Rachel

aly said...

No hospice nurse has anything on you, Mrs. Half-of-the-Cutest-Couple-in-the-Universe.

lifeinredshoes said...

I check in on you nearly every day, and when I click on your site I do so with my eyes almost closed, afraid of what might be waiting.
You have come so far on your journey with cancer, Mat's journey will be over one day, yours however will go on.
Through my Mothers illness I learned that all hospice workers are NOT created equal, and that a good one is worth their weight in gold.
I will comtinue to hold you in my thoughts and prayers. The days ahead will not be easy, but being open and honest makes all the difference in the world.
Wishing you all you stand in need of at this time, Life in Red Shoes

twin2 said...

Not sure if you remember me either, but you baby sat my kids Jamie and Ryan years ago here in Oregon. I got info on your blog from Diana. I check it from time to time. Your writing is amazing. I pray for peace for you and hope that Hospice can be of help to you.

SLP said...

It's definitely a new chapter in 'togetherness'
There is a whirlwind of emotion.
I am not sure what I can do to support you but I am here.
Say the word I will be there with you.
Thinking of you daily,
Stacey

Emily said...

I agree: Cutest Couple goes to Mat and Kimberly.

Kristiina said...

All those different chemo and radiation regimens sound dreadful, but I'm still sorry that that well has run dry. I kept hoping that one of them would be just the right match for Mat's cancer. Rats.
Now I switch to hoping that their pain management drugs are better than their tumor-fighting drugs, and that you can have some wonderful time together. Not to mention some great photo shoots.
My heart is with you....
Kristiina

Scott said...

I love that picture. I'm proud to know you guys and miss coming over for home teaching dinners and early morning snow adventures. I'm a little torn that we won't be randomly running into each other in the back halls of MGH.

The Proud Llama said...

Dang, Kim - after years of not seeing you anymore I find you on Facebook and see all this is going on - email me. munroe.9@gmail.com
- Darla

One Woman's Thoughts said...

I too, like many others, have Hospice stories to share, mine are those of both my parents and twin brother. And also as a nurse myself.
There is nothing that I can say that makes a difference, you are going through your own experiences and have your own stories to tell.
One thing about Hospice, it's still people is everyday life with all sorts of strengths and weaknesses that make them who they are. That goes for patients, families, friends, all the staff and everyoe involved in any way.
I found that the reality of it all helped keep a sense of real life and humor to remind us that people are people no matter what. Looking back, it's something most of us want, to experience life as it is for as long as we can.
I wrap my arms around you in caring and support for all your days and nights. Blessings to you and may the wings of angels carry you in your times of need.
About that cutest couple thing. I agree with you.

The Proud Llama said...

Kimberly, I just found this blog today, and I read every single post TODAY. I have just found your story and your beautiful, funny, sad, personal, witty, intelligent, inspiring account of all of these ups and downs just so incredibly gripping I couldn't stop until I read it all.

I'm glad to see the same old Kimberly I have known and loved through all of this. I can't believe all that you have been through. You are in my thoughts...