Hope and Fear

There is a lot going on and a lot not happening.  I don't see my surgeon to finalize this plan until next Monday.  Until then I only have a guess as to when surgery will be (we have a "penciled in" date) and where surgery will be (where I had it last time?).  In the meantime I am going forward like this is really happening.

This weekend I was searching handicap bathroom aids on Amazon.  Going to need a toilet seat riser and some grab bars for awhile.  And I will never stand in the shower again so there's a thing.  I particularly enjoy all my amazon toilet seat ads I see everywhere on the internet.  Good times, thanks Amazon.  Nothing like composing a work email while I'm looking at a toilet seat!

I am currently reading Pema Chodron's "When Things Fall Apart" which is a Buddhist look at suffering.  She writes about hope and fear being connected and encourages people to embrace hopelessness.  When I first read that chapter I was so sure she was wrong.  Embrace hopelessness??  That's crazy!  All I have right now is hope.

But the more I ruminate on this idea the more I think I know what she is talking about.  Buddhism is all about living in the moment.  All we have is this day and this moment, all we have is right now.  Hope is not about this moment, rather it is about something in the future.  Hope is looking for things to be different then right now.  Hope is a way of avoiding the embrace of the now.

I only have now with my foot.  I have a guess how this will go, that I only have 15 days left.  I only have 15 24 hour periods with this foot.  And in each of those days I will only have that one day to be in.  I can't look ahead.  I don't know what sufferings or struggles will come.  I can't look behind, there is no way to change the path I have already walked.  I only have today and the choices and thoughts of right now.  I am not ready to embrace hopelessness but I think I understand what Pema is talking about.

On my walk this morning I was not living in the moment, rather I was thinking about other days.  First I imagined talking my "walk" in my wheelchair and what that would be like.  And then I said to myself, by next October you will be walking like normal with your prosthetic.  And then I saw a little yellow moth flutter by and I realized it won't be here next October, it only has today.  It reminded me of my need to just be in today.  I don't know what any other day's walk will be, I only have today's walk.

The moth reminded me of where Jesus tells us not to worry.  That part about the birds of the air and the lilies of the field and today having enough worries and not to worry about tomorrow.  That is the same thing Pema was talking about with embracing hopelessness.  The birds and flowers don't have tomorrow.  And really, we don't either.  We only have today.  We only have this one moment.

So I am working to embrace hopelessness.  To let fear be.  To live just this one day I have.  I don't know what the future will bring.  But I know that if I am there, I will need to live in just that one day as well.  We only have this one day, there is nothing to look forward to.  I know it sounds depressing . . . but it isn't.  Its actually it's own weird little hope.

This guy

Yeah, what about this guy?  My husband Lars.

Well, he is taking this in stride along with everything else in our lives.  This guy moved with me to the smallest town ever in rural Washington state and that wasn't easy.  And then he moved with me to Missouri and we had never even visited this state before.  He is used to going on adventures with me.

This guy keeps my spirits up like no other.  Always gets my jokes, always good for a laugh.  Two winters ago I coughed and coughed and coughed.  I had pleurisy and then pneumonia and then kept on coughing because I had undiagnosed asthma and my lungs were full of crud.  I coughed so hard that one morning before the kids left for school I broke one of my ribs.  Ouch!  I could hardly move.  This guy stayed home and helped me medicate up and lay down.  And then, of course, I had to go to the bathroom and this guy helped me get there.  And then . . . terror of terrors . . . I couldn't get off the toilet.  I'm serious, I was totally stuck.  He couldn't pull me and I couldn't stand because I was in such tremendous pain.  We laughed and laughed.  And then, to make matters worse, I told him to text my mom (best friend) that I was stuck on the toilet and he accidently texted one of my parishioners, "Heather is stuck on the toilet".  Pastor friends imagine that.  Oh my gosh we laughed so hard.

And last winter when I had my first ankle surgery and was laid up for weeks I totally lost my mind.  One night I just decided I was running away.  Running away is impossible when your foot doesn't work.  I made a scene and hobbled down the stairs and made for my car and fell in the garage.  And this guy just let me have my fit.  He was there to help if I needed it but he didn't coddle or correct me.  He tried to stop my fall and then just let me cry it out.  He watched me crawl back inside and to the couch and just let me have my fit.  No judgement from this guy.  Just the space I needed and help when I wanted.

So this guy, I think he is OK.  I think we have been through a lot of strange and hard things and this will be just one more chapter.  This guy is pretty used to the strangeness that is me, and even though we don't always make it work most of the time we can.

This guy.  He has my back.  (and my heart)

These are ER selfies while waiting for him to get stiches in a cut finger

   

What about the kids?

Well, my kids (ages 8 and 10) have started talking about my impending surgery at school.  I guess I should have known this would happen but still, I wasn't ready for it.

I'm real open with my life at church.  I tell it like it is and I share the truth about myself, what I am thinking and how I am feeling, all of the time.  Its not like some super Pastor Heather show, but it is real and I don't hold back.  I'm talking about my foot situation in Bible Study and from the pulpit and in conversations and here in this blog.

So . . . is it any wonder that my kids are doing the same thing?  "What are you worried about in your life?" some unsuspecting teacher or counselor might ask.  Only to be hit with "my mom is having her foot amputated in a few weeks."  Jaws drop.

Sorry teachers and counselors and such.  I guess I should have, could have, told you or warned you or given you a heads up.  But, I've kind of had my plate full.

Today I sent an email to teachers and counselors and principal saying Yes this is going on at our house and here is the time frame and lets cross our fingers that the kids don't act out in their grief.

Because let's be honest, this is shitty for them too.  Mom will be weird and grumpy and won't be able to do all the mom things like get us up and make our breakfast, lunch, and dinner and do our laundry and clean the house and change the sheets.  And it means these two kids will need to step up and help with chores like they did last year when mom had surgery.  And we know it will be months before mom has a prosthetic and so until then what does mom have?  what does mom do?

And the question they aren't asking . . . why is this happening?  Why is this happening to mom, and by extension to them?  Its not fair, that's for sure.

Olivia and I talked a bit yesterday and she said she was worried about transportation.  How was she going to get where she needed to go?  Imagine her relief when I explained that I only need my right foot to drive, and I am keeping that foot.  Silver linings all around!

So, school world and dance world and scout world and anywhere else where my kids may blurt out the dreaded "a" word (amputation) I am sorry I didn't give you a heads up.  But it is true, we are doing this soon.  So, if you could give my kids a little extra love I would appreciate it.  Thanks.

What I'm thinking about

Today is a good day.  I am finally coming out of the chemo fog and feeling like myself again.  I had plenty of energy for church.  And even if I got confused, like I was so afraid I would on the chemo, I knew I could roll with it just fine.

I announced during prayers that I have stopped the chemo and opted for surgery.  I have three Sundays after this one and then will miss 3-4 Sundays.  I told them when I returned I would be in a wheelchair for a few months.  I purposely neglected to say "amputation" from the pulpit.  That word really scares people, so let those that have ears hear and the rest can catch up later.

Now that I am returning to life from out of the chemo fog I am so much more certain I am making the right decision.  I have known in my heart that amputation was in the future for a long time now.  This is a deep knowing.  Pastor friends, this is a knowing like knowing I am called and knowing which church God is calling me to.  I have had a knowing about amputation for months.  Now that the decision is officially made, I feel at peace with my future.

I have realized that with this choice I will look different and I will move different but it will still be me.  All my spunk, all my energy, and all the humor with which I approach life will all be there.  In the chemo fog I lost those things, I lost myself.  It was not a good path for me.

I know this is a strange and hard choice but I am thankful it is a choice I can make.  Amputation is always an option for GCT in the ankle but it is so frightening that few people choose it.  My DR has another patient with GCT in the ankle and she is choosing the new chemo that has led to liver failure.  Good luck and prayers for her.  That was so clearly not my choice.  My DR has patients with GCT in the knee, hip, and shoulder and for these folks chemo for life is the only choice.  So I feel lucky I have options, for me this is a blessing.

I'll share more about my thought process in the days to come.  In the meantime imagine what you would do.  You have three weeks left with your left foot, what needs to get done?  I can tell you the list of things I want to get done is long, and I need to prepare the house for a new type of movement.  Plus, how does one prepare their kids for such a change.  Lots to think about.  And some things will inevitably be left undone.

Friends, thank you so much for your prayers and words of encouragement.  I avoided reading Facebook after I last posted because I was afraid.  Last night I read my Facebook comments and felt so moved to know I am not the only person who thinks I can get through this.  I think I can do it, and others think I can do it, so I must be able to do it.  I will.  I can.  It will be ok.  Thanks for holding me in your hearts.  I will need it in the weeks and months to come.  Love - H

I've made my decision

Our visit with the oncologist went well yesterday.  There really are few options for me.  We talked everything over again and I made clear that I was unhappy on the chemo.  The more we talked the more it became clear to me that all of the treatment options are ways to delay or avoid amputation.  Nothing is a solution for my tumor but amputation.  So I am choosing amputation and my DR agrees.

Mom offered the minority report.  She wanted to slow things down and try a lower dose of the chemo.  She wants to buy more time.  But I pointed out that it would not be good time.  Time on chemo is sick time, not good time.  I don't want anymore sick time.  I don't want to stretch any of this out.

So, we have a date in mid October.  There is an appointment in a few weeks with my surgeon to talk process and with the prosthetist to talk prosthetic options.  I am awaiting a psychology appointment as well, since this isn't just about my body it is also about my mind.

Amputation in the abstract and amputation actually on the calendar are two very different things.  I'll have more to say later.  In the meantime, we have left the cone of uncertainty.  We have a plan.

The Cone of Uncertainty

Its hurricane season.  Thankfully I don't live anywhere near the coast (and I pray for those who do) but the news is full of announcements about the "cone of uncertainty" and various "spaghetti models".

I certainly feel like I am living in a cone of uncertainty.  I would like to see some spaghetti models of my future.  Which way will the path of hurricane Giant Cell Tumor take?

Will it be chemo for life?
Is amputation in my near future?
Is there a chance for a more invasive surgery that still saves my foot and my ability to walk?
Is there a cure on the horizon?

Just where is this Giant Cell Tumor hurricane going to hit the hardest?

No way of knowing right now.

I was thinking yesterday about how much I am a person who wants to know what is on the horizon.  I like to have a plan, to line things up, and to have life run in an orderly fashion.  I can hear you laughing because we both know life doesn't work that way.  But I really really try to make it do that.  I really try to keep things flowing in good order with minimal surprises.

Hurricane Giant Cell Tumor is nothing but one big surprise.  There is nowhere to go where I can escape the cone of uncertainty.  There is no future where this tumor (or its treatment) are not a lasting part of my life.  This hurricane is going to hit no matter what the spaghetti models are showing.  I am standing in the path of destruction . . . at least for now.

Tomorrow we head back to my oncologist at the University of Kansas Cancer Center.  I have a long list of questions that I have developed these last few weeks and I intend to ask them all.  I am also aware that the chance of getting any good answers is slim.  There isn't a lot of resolution here.  There are no clear directions to take.  And my Dr just might not know what the best path forward is.

See what I'm talking about?  Cone of uncertainty.

I'll let you know what happens tomorrow.

(If only I had a magic hurricane moving sharpie!)

Hanging in There

So this whole journey continues to be a learning process for me.  I am learning what to say, and mostly what not to say to people who are in periods of suffering in their lives.  I am also learning what to say about my own suffering.

Sundays are hard.  For an introvert who is a pastor who is passionate about dynamic and meaningful worship Sundays are always hard.  For an introvert pastor on chemo Sundays are the worst.  I am already scraping bottom and now I need to pull out all the stops.  I got nothing, but I need to come up with something because it is Sunday morning and (Lord have mercy) there are visitors out there so I better make this look good.

Everyone asks me how I am on Sundays, which is natural.  They want to know how I am.  And if you know me you know I am honest to a fault.  Well, that is a bad combination on Sunday morning.  "How are you?" "ughh . . .blerg" (think guttural noise with a frown)  I make it clear I am not good and then the person who asks is upset.  They really want me to feel better, or they really need me to be able to perform because its Sunday morning, or probably both.  And we both end up feeling bad.

Because the thing is, I'm not going to get better.  According to this path I am not going to ever get off chemo or get used to chemo or get better.  I'm going to feel bad for a long time.  That's just the way it is.

And so Sunday I realized I can't just say "ughh . . . blerg" when folks ask me how I am.  So what do I say?  Do I lie and say "I am fine".  That was my first instinct.  But that's a terrible idea because we would both know I was lying and I hate lying because I am such a terrible liar.

My mother suggested I say "I'm coping" but I don't like that either.  That suggests I have everything under control and I most certainly do not have everything under control.  I am not coping.

And then my church secretary had the best answer.  She asked me on Monday (she's a non-church goer) "are you hanging in there?" and I thought, that's perfect!  "Yes, I am hanging in there"  Like that stupid cat on the poster I am hanging in there.

I am about to fall, I totally don't have it under control, I am not coping, I am "ughh . . . blerg", and I am hanging in there.  Just like that cat.  I might get back in the tree or I might plunge to the ground at any moment, but I sure look like I am going to fall.

Hanging in there.  That's how I am.  And now I have something true to say.  "How are you?"  "Hanging in there"