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"

Today is a good day

Lest you think everyday is a bad day, I thought I'd tell you that today is a good day.  I woke up feeling OK (by the new standards of OK) and was able to take Candie on our normal walk.  Yesterday I was too tired so we just went around the block.

There seems to be a pretty direct correlation between nights I have to stay up and work and feeling bad the next day.  When I got home from work yesterday afternoon I was done for the day so today I am feeling better.

This is my day off, so I am happy to run errands and get things done at my own pace.  If I didn't have to work or mother I could totally do this.  But of course, there is only one day like this a week.

I am looking forward to the weekend.  We are moving furniture around (dumb I know) but I am getting my own quilt room downstairs.  The quilt dungeon. (so excited!)  It is good to have a project to work on (at my own pace) and something to look forward to.

Hope its a blessed weekend for you.  Thanks for your prayers which keep me going.  Love - H

Well, that was embarassing

Yesterday was an all around bad day.  I knew it would be.  Got the kids to the Dr for check ups and everyone is doing well.  They were troopers with mom in the waiting room.  I wore a face mask so I wouldn't catch whatever was floating around in there.  Don't know what's happening with my white blood cells right now but I'm going to guess it isn't good.  Kids did well ignoring the stares of strangers.  "Wow, you're sick" their eyes say.  "No" I think, "you're sick and I can't catch it."  I know I looked weird but I am trying really hard to stay healthy.  And like I said, kids just rolled with it.  They're troopers.

If that was all that was on the plate I could have made it through the day.  My mom fed us and while she finished dinner I had a chance to lay down and rest.  There is just no time to rest.  The pharmacist from the Cancer Center called yesterday to check on some other side effects I'm having (which you're glad I'm not sharing here) and gasped when I said how much I am working.  What do they expect?  We're trying this on for life right?  I need to know if I can do this forever, not how many sick days I can take.

Anyway, we had Session last night and COM was here because I had previously been making a fuss about their complete neglect of tri-annual visits.  Presby people know what I'm talking about.  When the meeting opens at 6:30 I am so profoundly tired I cannot open my eyes.  Literally, I am falling asleep sitting at the table.  I listen to folks check-in and I cannot keep my eyes open.  Finally my turn to check-in and I try to explain how tired I am and how I am totally listening but I can't open my eyes and instead of allowing me to talk my stupid body starts crying.  I was mortified.

Women in ministry know what a "no-no" crying is.  It is just such a cudgel used to bludgeon us when we accidently let it slip.  Being a woman in a man's job is a challenge and crying is the absolute worst thing you can do.  Ugh.  It would be one thing if it was just my people, they know me and they know I don't cry.  But COM was there, strangers were there who had come to judge us, and I was beyond embarrassed.  It was the worst ever.

Within an hour or so I had energy back and could participate fully but the mistake was there.  I know I couldn't control it and yes everyone understands but that doesn't make it OK.  Like a cup too full of water, my tears just slosh out.  I can't help it.  And I am so tired.  So, so tired.  There is nothing of me left.

Next week we finally go back to the oncologist and I am going to be really clear.  I can't live like this.  I can't parent and I can't pastor and I can't live.  This chemo has scraped away all my insides and I am just a shell.  I have nothing.

If this will shrink the tumor so we can cut it out fine, I'll stay on it for a little longer.  But we have to lower the dose.  If that is not an option then get me the hell off this shit.  You can have my foot.  I just want my life back.

Olivia being a trooper.

Liminal Space

Pastors sometimes like to throw around big words and one of those words is liminal space.  Liminal space is an intermediate or transitional space.  It is a place on the threshold of two different things but not really any one of those things.  Its an inbetween space, like the space between death and life, or how the kingdom of God is already here and not yet happening.  Liminal space.

My life exists totally in liminal space right now.  The chemo I take everyday is poisoning not just my tumor but my body as well.  It is robbing me of life, but not killing me.  It is forcing me into a grey area where I live on the margins of my old life.

Every morning I wake up feeling bad.  I feel like you might feel when you are coming down with the flu.  I am achy, tired, and my stomach is upset.  But I never get sick.  I am always coming down with something.  But I never get sick.  And I never get better.  Each morning I wake up and I am so sad to be here again, another day, in this awful grey space.  Not dying, not sick, but not living either.

Today is another bad day.  I think I did too much yesterday and I am paying the price.  And there is so much today that has to be done.  Kids need to go to the doctor for check ups (I'm only three or so years behind) and that will mean waiting forever in the waiting room with a face mask so I don't get sick.  And Session is tonight, with COM coming (finally) but that will mean long, tense discussions keeping me way up past my bed time and past my peak energy time.  I am dreading every bit of this day.

But then the day will be over. Tomorrow will be a new day, with its own to-do lists and struggles and still feeling bad but at least it will be tomorrow.  I try to find hope wherever I can.

And flowers, today and yesterday there have been flowers.  And they always seem to make the world a brighter place, don't they?  They at least remind me that even though I am wilting right now, I can't wilt forever.  One day I will bloom bright again.  At least I hope so.  The longer I take this chemo the more I become convinced that I can't live in this liminal space forever.  I just can't.

Happy Flowers

Every day I walk

I used to walk all the time.  It is one of my favorite activities and my only good source of exercise.  Before I was on this chemo I would put the kids on the bus and then take my dog Candie for a walk.  Down we go to the end of the trail and then turn back.  Its about a mile.  Before I got sick she and I would double the route on weekends, days when I didn't have to get home and get right to the office on time.  Walking was easy.  It was light and freeing and I always felt like I could go farther and do more.

I still walk every day.  Candie is ready and we go each morning.  But now I am so tired.  Walking on the asphalt trail feels like walking in mud or walking under water.  Each step takes so much more effort.  Each walk is so much harder than it used to be.

I try to ignore my aching body and the little voice inside my head which tells me I should just lay down on the asphalt and rest awhile.  Candie doesn't mind if we have a slower pace.  And as I ignore my oppressive fatigue I try to notice everything outside myself.

I never take my phone when I walk.  No music or podcasts.  Just me and the birds and the bugs.  And of course, Candie.  I love to listen to the sound of my breath and Candie's breath together.  And I look and look for the beauty of the world.  The dew on the morning grass, the tiny spider webs that dot the lawn in hopes of a future meal, the golden leaves shimmering as they fall from a tree, the little snail that makes his own labored journey.  We are all there together, nature and I, and I am sure I am not the only creature out there who might not be feeling their best today.

I walk every day.  I refuse to give up.  It's a lot harder then it used to be  - but still I go.

Plus - this girl is always ready to go with me.

So that we can all do better

Or . . . why I am writing this blog

I have several selfish reasons for writing this blog.
1. I love to write and now I have something interesting to write about
2. I want those from past lives and experiences to pray for me if they are the praying type
3. I will need a cheering squad when I am learning to walk again (if amputation is in the future)

But the main reason I am writing this blog is so that we can all do better.  All of us want to offer the best love and care we can for those we know who are suffering with illness.  I know in all the years I've been in ministry (coming up on 13 now) I have walked with tons of people through times of suffering.  There have been friends and loved ones with terrible diagnoses, terrible grief and loss in the family, and even journeys all the way to death where loved ones move on without me.  Having my own experience of illness is opening my eyes to the ways I offer care for others.

Many of my friends are other clergy and we are always striving to give the best care we can.  But when something happens to us, our perspective changes.  I recently had a clergy colleague die, and as he was approaching death he had some fresh insights.  I had thought of those things before (duh!) but still, they were powerful things for him.  Maybe you will have already realized all the things I am currently learning (duh!).  If so, good for you.  But we could all do better.

I had no idea that the most difficult part about my diagnosis would not be how I felt about it, it would be how other people felt.  The care and concern of those around me is such a weight and a burden.  The love everyone has feels heavy, not light.  It takes way more energy for me to deal with everyone else's grief around my diagnosis then to deal with my own.  I didn't know it would be like this.

Now I know when I am around someone who is suffering, I want to give them so much more space.  Just let them talk about how they are feeling, their own fears and concerns.  Or not talk about it at all.  I love the weekends at home because we don't talk about my foot, unlike the work week where it comes up in nearly every meeting.  I am learning that the best way to offer support is to offer space.  And we could all do better.

If you find yourself here in this blog, please do not take offense.  You are certainly not the only person to have offered advice (love), told me to look for a second opinion (hope), or asked me about my foot (care) when I didn't really want to talk about it.  We have all made these mistakes, me included.  And we can all do better.

My hope here is to share my authentic experience of illness.  And my insights as one who so often offers comfort and care into all the ways I can do that better in the future.  We can all do better, but only if we share our honest truths with each other.

In other news . . . My foot hurts more today but my stomach hurts less.  I think that's a good thing.

Love to all and thanks for your sweet and caring love for me.  God is with us and we always have a chance to do better as we express our love for each other.

The myth of the second opinion

It's hard to balance the weight of everyone's hope and advice.  One thing I hear more than anything else is that I need to get a second opinion.  This is a hard one, as there really is no second opinion for me.  I know I have TGCT-TS and I know there is no cure.  So what is the second opinion?  There is no doctor out there that has a magical answer.  There is no path I can go down where I don't have this disease.

In case you are wondering, let's review facts.

1. My diagnosis is sure.  Remember, I was diagnosed September of 2018 with TGCT-TS in my left ankle.  The surgeon removed the tumor to the best of his ability.  The tumor was tested in the operating room to confirm the diagnosis, and then later the entire tumor was tested in the pathology lab.  All results show this is a Giant Cell Tumor.  I think the primary purpose of a second opinion is to seek an alternative diagnosis.  At this point, I would not trust anyone who claims I don't have TGCT-TS.  Especially since the tumor has quickly grown back, as it would if it was TGCT-TS.

2. Treatment options.  I have already seen two doctors.  My surgeon and my oncologist.  The oncologist made all the options very clear to me, and they are as follows.
a. do nothing
b. try Gleevec (a chemo) to shrink the tumor.  This chemo was designed for leukemia patients but there has been some success treating giant cell tumors.  (This is what I am on)
c. try Turalio  a new chemo that was just approved last month.  This chemo was designed specifically for giant cell tumors but is very hard on the liver.  Some patients in the clinical trials needed liver transplants and some even died from liver failure.  I need my liver (hello wine) so this is a firm no for me.
d. get in an immunotherapy clinical trial.  There are clinical trials looking for giant cell tumor patients to try immunotherapy right now.  Immunotherapy works by stimulating the patient's own immune system and often results in immune diseases as a side effect.  Not a risk I am willing to take when there is no known results.
e. amputation

These are the only, I repeat ONLY options.  I have joined online groups and read the stories of other people suffering from this disease and no one is anywhere where doctors are doing anything different or where they have a cure.  There is no cure for this condition.

The only option not listed is to try another surgeon.  Maybe they could successfully remove the full tumor.  You need to get EVERY little cell or my tumor will rapidly grow back.  I will be asking the oncologist about this when I see him in a few weeks.

But you see, this idea that there is another answer out there, that there is another opinion, is just not real.  There is nothing else out there for me or for anyone else with this disease.  And when people keep asking me why I haven't done more its painful.  Like somehow I haven't done enough or thought this through or searched hard enough.  Like somehow because all the futures are negative that this is my own fault.  Like I have given up on myself by accepting this reality.  If only I could find that mythical second opinion.  I wish it was out there.  But I am convinced its not.

In other news . . . today is a hard day.  I woke up feeling so sick.  And its hard to get up and get kids fed and off to school.  To trudge into the office and try to conjure a sermon from my foggy brain.  I took a morning Zofran (a first) to help my tummy but it makes me tired.  And chemo makes me tired.  And I'm sad.  Sad and tired.

Oh well.  I just have to keep going.  

400 milligrams of moxie

I'm doing well, considering.

No really!  Lots of folks in the online PVNS forums can't tolerate 400mg of Gleevec which is the chemo I am on, but I think I am tolerating it pretty well.  I give the credit to all the folks out there praying for me.  We might not be able to erase the tumor with prayer but your love and support sure help me shoulder the burden of treatment.

My stomach aches are at a minimum and the headaches also are less.  I am just tired, and a bit confused.  The kids joke that I have "brain loss" which is funny.  Jokes are all I have to hold on to, and I really want to laugh and smile right now.

But I really do have trouble doing things like I used to.  For example every morning I follow the same routine to shower and get ready for my day.  Every morning the exact routine. (OCD much?)  Well, this week I did my routine wrong.  I got confused and I forgot what I was doing.

And at church today I had trouble reading out loud.  I misspoke reading the Bible several times in Sunday school and during the sermon.  Luckily I am a manuscript preacher so I have something to hold on to in the pulpit, but if you see me looking down more often that's why.

On the whole, I am just muted and tired.  Its like someone turned down the volume knob on my life.  The grey days don't help.  Don't get me wrong, I love the rain, but its like the whole world has dimmed just a bit in sync with my tired body/brain.

It's like I've lost some of my glow, my spark, my ray of hope and sunshine.  Its like I've lost some of my moxie.  About 400 mg of moxie to be exact.