Monday, December 30, 2013

Chemotherapy and Blood Work


Wes went in for some blood work and a meeting with his chemo oncologist today.  Result:  His blood is perfect.  White cells still strong.  He is experiencing very few of the side effects from the chemo so far, has good energy and is still working.

All these things are answered prayers. 

Glory to Thee, O Lord.  Glory to Thee!

Sink or Swim

I am learning through this crisis in my life that is my spouse having cancer to internally slow down.  Think each thought,. Feel each feeling.  Be in each moment.  Wonder each wonder.

It is OK to think, feel, and wonder.  But it's also OK to just BE.  And to focus on the necessary dailyness of being.  Things like coffee and lentil soup and what's for dinner? 

I stare at my pretty wedding rings that are mostly not even "wedding" rings (one was from an anniversary and one was from a Christmas and is CZ)  and I wonder how much longer I will "get" to wear them.  Then I remind myself that I can wear them forever if I want to.  Because LOVE lasts forever, even beyond death. 

I am learning to take care of myself....or continuing to learn this.  I am eating nutritious food.  I am not caring as much about weight loss as I am about keeping up my stamina and health...as little of that as I have. 

I am taking my vitamins. 

I am learning that it is impossible to cry while I'm swimming.  But that's pretty much the only time where it's physically impossible to cry (too busy staying alive in the water to cry, and that is what swimming ultimately is:  putting yourself in an unnatural-to-humans environment and moving forward.  A good metaphor for so many things.) 

I value bed time, and simple to so lists. 

I am learning to delegate. 
I have learned how to pay the bills. 

I have learned that I don't need to go to every Oncologist's appointment yet.  I can drop him off and go do other things. 

I am learning that it is important for my soul to give alms and think of others, too. 

I am learning that I can't do everything, and that help is available. 

I am learning about true love, and to treasure each little moment. 

I got a water bottle.  It's good to stay hydrated. 

I like makeup and manicures and sweatpants and comfy robes, psalters and prayer ropes and rosaries and akathists and sugar free chocolate.  There is room for all of that. 

I am learning that if it's between washing a sink full of dirty dishes and the chance to go swim, I'd better go swim... because...survival.

Sunday, December 29, 2013

Happy Birthday, Wes!

Birthday man turned 44 today!  I made a high protein, low carb cake out of coconut flour and flax meal.  It contained 10 eggs!  And chocolate.  It was sweetened with erythritol and stevia.  One of Wes' medications has evil effects on his blood sugar, so other than a bit of fruit and the occasional portion of prunes, he is avoiding sugar.  The cake was popular with everyone in the family, which was a nice surprise.  And since it is not loaded with sugar and carbs, it will make a nice breakfast!  Here are some pictures: 
Prayers are certainly appreciated.  Right on schedule, Wes is starting to experience some of the side effects from his chemo.  He can't go very long with an empty stomach now, without experiencing an uncomfortable gut clenching sensation.  And the hair loss: That has begun and is progressing.  Please pray that God would grant Wes the ability to keep working through this round of chemotherapy and radiation, which will last until near the end of January. 

Thursday, December 26, 2013

Camned Dancer

I picked Wes up from work today to take him to his radiation appointment.  We were chatting.  How was your day?  How was your energy?  Well, I see at least you still have your hair...as I snuck a look at his beard and chuckled.

He paused, a funny look on his face.  "Actually..." and he whipped off the hat I"d knitted during his biopsy surgery.  I pulled the car over, still in the parking lot of the place where he works, so I could take a look.

Sure enough, a couple of bald spots on the side of his head:  one of them as big as my palm. another, about thumb sized.

I joked that at least now we know the pills aren't placebos.  The laughter covered up tears.   I noticed he looked pale, wan, and worn out. 

His hat went right back on, and we ran a couple of errands (filling prescriptions at the pharmacy, checking mail at our P.O. box...nothing earth shatteringly fun). 

After supper I shaved his head with barber clippers.  I've done it hundreds of times before.

But this time it sure felt different. 

Camned Dancer. 

Saturday, December 21, 2013

Saturday Update

Eight days of chemo and two weeks of radiation under his belt and Wes is still feeling pretty good.  So far he still has his hair and although we have noticed a slight increase in fatigue, he is still pulling his weight at work.  I'm so grateful that he's working from home as much as he is.

Me, how am I doing?  Horribly.  Seems like my whole day every day is errand after errand and driving driving driving.  My son has missed two activities (Boy scouts and choir practice) this past week, and the girls missed an American Heritage Girls meeting because I was too tired to drive in the evening. And I was also too tired to call and find them a ride. And by too tired, I mean, I could barely hold my body upright by the time I dragged through the door after the radiation treatments around 5 pm each day.

Thank God for the crock pot.

On Wednesday, I bought a car.  I won't go into details about how ridiculous and exhausting the whole process was, but in the end, we got approved for a car loan and were able to get this: 

And it's kind of a big deal for me, personally, because I was the one to do the research, find the vehicle, go talk to the dealer, do the test drive and fill out the initial paperwork application for financing.  I wrote the check for the down payment.  And then I brought Wes in in the evening to finish up the paperwork, sign stuff and all that.  Sorry for the lousy picture that cut off the front and back.  My new ride is a 2012 KIA Sedona.  I hope, truly, that this will be my VERY LAST minivan.  I want my next car to be a compact, because by the time this one is done, hopefully ALL my kids will be adults and driving their own cars.  I look forward to the day.

I don't mean for my blog or my facebook posts to sound whiny or pathetic...but they are.  I'm sorry.  Every day Wes is doing well is a day for rejoicing.  And at the end of this month, hopefully, he'll be allowed to drive again, I think (although I am deeply uncomfortable with the idea of a person with a brain tumor driving a car, even if he IS on anti-seizure meds).

I AM struggling with depression and exhaustion and exhaustion and exhaustion and did I mention exhaustion, and obvious adrenal fatigue and pain.  Having this sort of challenge would be exhausting for anyone.  This, on top of my fibromyalgia and Hashi's, and parenting the kids through their autism related challenges in the midst of this...oy.  I feel sicker than I think I ought to feel with these conditions.  Perhaps I am delusional about what to expect with fibro etc. 

This afternoon I promised to take the kids to see the Hobbit movie. 

I honestly don't know how to ask for help. 

Tuesday, December 17, 2013

In All Things, Give Thanks

I suppose my readers here would like an update on how Wes is doing...So far, he is doing GREAT.  As a matter of fact, he is running circles around me. His face is puffier though, and his smile tighter...like Larry the Cucumber.  Small differences.  Probably from the steroids. 

He's been receiving radiation for six treatments so far (today is day seven) and chemo every day since last...what was it?  Wednesday or Thursday.  something.

Each day he has energy and no side effects is a gift, and so far, he's been fine.  We do realize that it is cumulative and that the nausea will probably kick in once his stomach lining cells have been destroyed along with his hair follicles and hopefully some of those nasty cancer cells.  We shall see...but each day he is feeling good, we give thanks.

Meanwhile, I am EXHAUSTED and dealing with plenty of fibromyalgia pain from day to day.  I don't have the option of slowing down and resting, since I am the family driver, at least through the end of this month.  Barring another seizure, Wes can return to driving on his birthday at the end of December.

I'm still trying to take good care of my health.  I saw the doctor yesterday and we talked about what else I can do.  Even after two years of heavy duty vitamin D supplementation, my levels are still too low.  So she's bumping that up, among other things.   My big question for today is:  stay home and putz around the house (muchly needed!) or go for a swim at the YMCA (also muchly needed).  

At this point, a week after the car wreck that totaled my minivan, it is looking and feeling way more like an act of Providence (God's providing grace) than something bad.  We got the settlement from the other party's insurance company, and it is WAY MORE than Kelly Blue Book value.  We will be able to go and buy a much newer minivan and use it as a sizable down payment.  Considering that our old van was leaking oil and starting to fall apart on us, this is a GIFT.  Glory to God for all things!!!!!

So, this is all the Sheldahl family updates that are to be had.  The kids are continuing in their work and school work.

I realized yesterday evening that Christmas is only a week away.  I have not given one single solitary thought to baking, or feast-planning, or anything like that.  Before our family got medical orders to eat gluten and dairy free, my go-to Christmas dinner was a Stouffer's Lasagna.  Unfortunately, that is flat out no longer a possibility.  I don't want to do a ton or work but I want to put something on the table that a)everyone will like-HA! b) is relatively effortless and c) feels festive and special.  Tall order.  And Christmas cookies....need. to. make. Christmas. cookies.  Because they don't sell gluten free ones at the deli.

And for today, that is all she wrote.  There is not enough coffee in the world to coax anything more profound from my fingertips this morning.  Have a blessed day.  

 

Friday, December 13, 2013

Lipstick Courage

At the oncologist's yesterday morning, I observed that you could pick out the caregivers. Most of them seemed to be daughters of elderly mothers or fathers. Some sons. The daughters and sons were my age or older. 
 All the women were very intentionally dressed up just a bit...just like me. Perhaps it is forced cheer in a stressful and sad place:  Lipstick courage and prayer to bolster the flagging spirit that can too easily descend into that sorrowful place of anticipation. 
The oncologist office seemed like a very sad place, on the whole. But also full of caring and devotion, love.  
I coined the phrase "Lipstick Courage", not to call it false courage, but rather to describe the particular place a caregiver finds herself in.  It's a strange place to be; a prayerful place, an exahusting place, a place of death-to-self.   I know this, and I've only just barely stepped across the threshold.
During all my copious weeping last week, and the week before, someone advised me to take special care for myself during this time of taking care of Wes.  This is good advice.  Putting on some makeup is the easiest thing I do, but it is perhaps, merely a reminder to myself to take care of myself in all the other ways that matter more:  nutrition, sleep, prayer, exercise (have not figured out yet how to do that one on my new schedule), reaching out to people and saying "yes" to offers of help, and BALANCE.  
More than one person has told me that Cancer is harder on the caregiver than it is on the sick person.  Perhaps that is true, at least until just near the end?  I don't know.  It won't be me losing my hair and vomiting.  Those things are still just a "perhaps" for us.  Right now cancer just means extra doctor's appointments, radiation appointment daily and some pills to take on a schedule. Me doing lots and lots of driving.  And extra bills to pay.  
So, here's to Lipstick Courage, and all that it means:   The best advice someone has given me is to live in the NOW. I strive to do just that. 

Tuesday, December 10, 2013

An Eventful Day...

Yesterday was very eventful.  It was NOT the type of day I imagined when I was stretching and waking up as my alarm clock went off.

It started out normal enough:  I took Maia and Wes to work.

First detour:  I went to the beauty parlor to get a hair cut.  I came away with a wax, cut and COLOR.  And I ADORE how my hair looks now.  The stylist said that I was 15% gray....I'd been thinking of getting a box and doing it myself, but I have consistently had bad results doing that...the boxed color just slides off my gray hairs. 

So I got a new "do" and that took all morning long.  Sorry kids.  Bad mom.  They got their school work done independently, as usual.

Because the salon took for-freaking-ever, I had to run and pick a Maia a few minutes late, grab some lunch and eat it while driving to pick up Wes.  Yes, I AM that driver.  The one eating pie.  While driving.

So, long story short...Wes picked up and dropped off at Cancer center for his first radiation treatment.  Me, home resting for a few minutes because getting one's hair done is just so...strenuous.  La!

Finally Wes called me around 4 pm to be picked up.  On my way there, about 3/4 of a mile from our house, I was in a car accident.  Someone ran a red light, and crashed into the drivers side rear wheel area of my tired old minivan.  Took the wheel off.  I did a 180 in slow motion. 

That someone...could have been pie eating ME.  I could have done that.  A busy mom, fresh from Christmas shopping, rushing and worried to get to her kids' bus stop on time. 

So.  Totally. Could. Have. Been. Me. 

God bless her and be with her. 

Thanks be to God!!!!!!!!  THANKS BE TO GOD!!!!!  She hit the BACK of my car and not my door.

It hit me later how close I came to being very very seriously injured.  Or dead.  Thanks be to God, I was not.

So, the next few hours were spent standing in the cold, talking to the police, waiting for a tow truck, etc.

Poor Wes had to walk home from the cancer center.  2.1 miles to the accident site.  So, eventually he showed up and started calling insurance agents, and such.

I am way to dependent on him for that stuff.  Oh well.  I guess I still get to be.

The wheel is off my car, the axel, I think, might be broken.  (So says the tow truck man.)

Today will be the hassel of getting a rental, running errands that were supposed to be run yesterday evening, and starting to deal with the car insurance company of the person who hit me.  Fortunately I have a witness, and her story matches mine, and there is a police report...it's all just stuff to do.  Stuff to do.

So, the question that has been on our minds of whether or not to replace this vehicle, and when, seems to have been answered for us.

And all I have is a slightly sore jaw, and the feeling that I experienced some torque.  If I need PT or a chiropractor, I will find one.  And the insurance company can pay for it.

I'm grateful for the friend who came a picked us up and took us home.  It was SO VERY COLD.  I'm grateful we were able to slip into the Goodwill store and warm up.  People are kind.  I'm grateful for our dear friends who loaned up their car for a day or two until we get a rental.  

All I see here is God's protection and provision, and I'm feeling extremely grateful.  God be glorified.  


Friday, December 06, 2013

Gluten Free Cinnamon Rolls

3 cups gluten free flour blend (I use 1:1 ratio of tapioca starch and rice flour)
2 tsp. salt
6 tsp. sugar
1 tsp. xanthan gum.
1 T. rapid rise yeast

Mix dry ingredients. Add to this:

1 egg
1/4 cup oil (I used sunflower seed oil)
2 or 3 cups warm water 

Stir together, and then beat with a mixer until batter is smooth.  this is pretty much just like my gluten free bread recipe up to this point, just w/ smaller quantities.

When batter is smooth, gently shake in some gluten free instant mashed potato flakes, and mix them in, a little bit at a time.  Do this in small amounts and slowly...don't get the batter too stiff.  Stop adding potato flakes when batter is sticky but not completely stiff.

Add a tiny bit more flour (about half a cup) and mix it in, so the batter is now a dough and forms a ball.

put some flour on your rolling mat/surface and pat this dough out so that it is a large rectangle, less than 1/2 thick.

spread melted butter or oil on the dough and sprinkle liberally with sugar and cinnamon.  Roll up, then cut 3/4 inch slices and place in oiled 9x13 pan.

Allow to rise in a warm place between 30 minutes and an hour.  It doesn't rise very much, but will a little bit.  Bake at 350 for about 35 minutes.

enjoy.

I apologize for the loosy-goosy nature of this recipe.  Tis how I cook. 

Wednesday, December 04, 2013

Friends

I had a wonderful time today, visiting with my bestie, Alicia.  She and her girls came over for tea and baked something-or-other and we had a grand ol' time.  Of course we talked about all the important things in life:  kids, our concerns, health stuff, Church stuff, God stuff...all that stuff.  We drank tea.  We used pretty china.  It was so awesome. 

Earlier this morning I was feeling pretty emotional, and I didn't want to go home after I took Maia and Wes to work.  So I hit the thrift store, and I found some tea cup/saucer sets!  (I collect them).  I also found some pants that I was in need of.  So, mission accomplished.

Pink Roses on the tea cup!  That's special to me. 

And I had another wonderful conversation with another friend tonight after I dropped off my son for scouts.  She had her new 12 passenger van to show me, and we talked about the sorts of things people who buy 12 passenger vans talk about:  Health, nutrition, when the baby is coming...you know...good LIFE stuff. 

I realized that Wes' cancer diagnosis feels a little bit like a pregnancy in reverse.  There's that sense of "everything is forever different now" along with that strong urgent sense of expectation.  But this is a very different sort of passage, and is more negative than positive.  But in that "rite of passage" "life change" sort of way, a cancer diagnosis is huge....and forgive me if I am writing as though I have decided that he is going to die.  I am, I suppose.  I have to accept it.  And I'm doing a lot of processing of that idea...while still praying and asking  God for healing. 

I am surrounded by good friends and family and love.  I can feel it.  It is real.  Thank you. 

Tuesday, December 03, 2013

Details

Today Wes went to the radiology Oncologist.  I liked the doctor.  He was very informative and explained the procedure and process of what Wes is going to be going through  over the next six and a half weeks.  The most interesting tidbit we learned was the size of Wes' tumor.  Back on September 30 when he had is Aphasia episode, and we took him to the ER thinking it was a stroke, the tumor measured 2.3x2cm.  On November 21st, less than 2 months later, the MRI they did before the biopsy showed that the tumor measured 3.3x3cm.  That is a LOT of growth!  And very rapid growth! 

I think this knowledge really has hit us hard, making it all real, again, on a whole 'nother level.  I shed a few tears, and so did Wes, and so have some of our kids.  Each one of us is showing our sadness and fear in different ways, and I'm trying to encourage us to talk a little bit about the fact that people grieve differently from one another and that there is a wrong way and a right way to grieve. 

Obviously, the outcome is not guaranteed, one way or another.  God is not a vending machine in the sky, and we don't just demand healings from Him, even though we humbly ask. 

Jesus also asked that this cup may pass from him, when He was in the garden of Gethsemane,facing his torture and death.  But then He prayed "Thy will be done". 

And that is the prayer of my life:  "Thy will be done." 

So, I don't know the future.  And that is a good thing, because the future is un-handle-able.  But we have grace for the present. 

On Thursday Wes will see the medical Oncologist, and be started on oral chemo drugs, in addition to the radiation therapy.  Of course he's also going to work daily and working from home when his schedule demands that, since I'm still doing all the driving for now.

Symptoms so far, that we can discern:  Words come slower and with more difficulty.  Wes misspells things more easily, is more sensitive to noise, and sometimes has trouble singing a tune. He is more run down and gets tired more easily.   No headaches yet, thank God, and so far just the one seizure. 

Lord have mercy, Lord have mercy, Lord have mercy. 

And my God be glorified.  No. Matter. What. 

Sunday, December 01, 2013

An Ordinary Day

Today my fibromyalgia kicked me in the rear, and I stayed home from Church.  Unfortunately that meant the kids stayed home, too.  Wes, feeling great, walked the 1.5 miles to Church. 

But for supper we had a couple come to visit us who live in another state, whom we have been friends with since before we were each married.  (In fact, their wedding was just about three weeks before ours, the same summer).  It was so good to visit!  They are the types of friends who are friends for life, that you just pick up with again where you left off and there's really no "leaving off" even if we have not seen each other in a few years. 

Tomorrow, thankfully, is an ordinary day.  I'll just get up, take Maia to work and then take Wes to work.  After that, I have to go get my blood draw done, so that my doctor can have lab reports on how I'm doing with my various health concerns.  That's what so weird and difficult:  Just because Wes has cancer does not mean I don't still have thyroid disease and fibromyalgia that I have to manage.  Just because Wes has cancer does not mean Bethany doesn't still have her autism and mental health issues to contend with.  Just because Wes has cancer doesn't make the world stop. 

I think the world should stop. 

Inhale. 
Exhale. 

Inhale.

But I'm so glad tomorrow is fairly normal    I hope I can go for a swim in the afternoon.  I desperately need the exercise. 

On Tuesday the extra doctor appointments start for Wes.  But tomorrow  I'm going to hang on to ordinary as tight as I can. 

Fundraising

Several people have suggested to us that we start fund raising for Wes' cancer treatments.  To that end, I have set up a gofundme account.  http://www.gofundme.com/5jfxe4

With humility and gratitude.  May God be glorified.