It’s been quite awhile since I’ve written.  I know the picture shows up at the beginning of the post, so I’ll talk about our sad news first.  We made the extremely difficult decision to put our sweet Angel to sleep last Sunday.  It had become abundantly clear that she was suffering, though she never complained even when she was hurting and unable to walk or stand.  She lived into her 14th year and was, seriously, the best dog ever!  She was a joy and a true blessing to us all.  Her absence is an enormous silence and void in our lives.  Tom and I cried and sobbed until no more tears would come.  It’s really the only bad part of loving a dog; knowing that because of the pampered life we give them, they rarely die of natural causes.  We have to make the decision.  The terrible, awful, gut-wrenching decision.  In the end, their eyes let us know that the suffering has conquered the happy.  I loved that dog so very much.  I don’t know where the spirit of a dog goes when they die, but I hope and pray that its the same place people go!  So, we have declared October 11th as “Celebrate Angel Day”.  Rather than dwelling on her passing, we will celebrate her life and all the amazing stories we lived together.  Never, ever “just a dog”.

The picture I chose to put in the “I had a wonderful time” frame has rainbows dancing on her fur.  We have crystals hanging in several of our windows and occasionally when the sun hits them just right, a roomful of little dancing rainbows will appear.  My Mom was the one who started doing that so they (the rainbows) always remind us of her. My heartfelt wish is that Mom and Angel are having a wonderful time together in heaven, moving freely and dancing about.

Now, on to the good news.  Great news, even.  I had my first post-surgical CT scan of the chest, abdomen and pelvis and it came back all clear!  I believe the term is NED (No Evidence of Disease).  It has been five months since the tumor was removed and almost three months since I started the Gleevec.  I’m also very grateful to say that my blood work is all within the normal range, so my immune system and liver seem to be holding strong.  I continue to tolerate the drug well  and have minimal side effects.  I believe the best term to use here is Halleluiah!!

That’s about it in a nutshell.  I’m off to make a big batch of chili for supper. We are having such a beautiful Fall here in the Hills.  The colors are amazing, the air is crisp and the night sky is full of bright, twinkling stars.  Breathe deep and cherish life.

“I never behold them (the heavens filled with stars) that I do not feel I am looking into the face of God. I can see how it might be possible for a man to look down upon the earth and be an atheist, but I cannot conceive how he could look up into the heavens and say there is no God.” – Abraham Lincoln

Yes, its been a good week.

I’ll admit I had a bit of anxiety going into this week.  I’d had almost too long to think about starting the Gleevec and I’d read way too many comments in support group sites about the potential side effects.  Yeah, I know I said I wasn’t going to read that stuff anymore, but occasionally I still sneak a glance. Or two.  In all honesty, I gained some good insight and suggestions from a few of the posts and I will credit those anonymous cyber angels, along with a great deal of prayer, with a very good physical response to the drug.  One of comments I read was from a guy that had found a good quality meal replacement protein shake, and it had all but eliminated the terrible nausea he was previously experiencing.  A  morning smoothie with my favorite protein meal replacement has already been part of my daily routine for a long time, so I decided to take the pill in the morning after drinking my smoothie and then go get busy at work.  Another person commented that she keeps her arsenal of protein snacks with her at all times and munches on them to keep the nausea at bay.  I picked up a few of the suggested snacks and have them available so I can “graze” on them during the day.  Another common side effect is muscle cramps and spasms, especially in the legs and feet.  The suggestions were potassium (bananas!) and magnesium.  Again, this one is already done for me because I put a banana in my daily smoothie and have been drinking CALM (a magnesium plus calcium powder mixed with hot water) in the evenings to relieve restless legs and control blood pressure for over a year now.  Another side effect is fatigue and everybody seems to agree that exercise and keeping the body moving battles fatigue.  I did not feel any fatigue during the work week but I have felt it a bit this weekend.  I’ve mostly given in to it, too.  I feel like I need to relax just a bit, so I am.  I have been on my exercise bike for a minimum of 30 minutes each day – usually right before I go to bed (it helps me sleep).  Speaking of sleep;  I’ve been sleeping better than I have in a very long time.  So we’ll call that one a benefit!    I have had a touch of edema and puffiness.  Nothing major and hopefully it won’t get any worse.  Anyways, the greatest benefit of them all is that a targeted drug like this exists and its mostly just busy shutting down the enzyme that causes those errant cells to grow into something they shouldn’t.  Kind of like the local cop that is also a School Liaison Officer.  Their presence changes lives. So basically, I seem to be tolerating the drug well.  Praises of thanks and joy!!!!

More good news of the week:  My duck came in 30th place in the 26th annual Great Black Hills Duck Race, a fund raiser for the Children’s Miracle Network, and I won a Strider bike!!  Since I don’t have grandchildren (yet!), I found a great organization to donate it to. Share the love!

And yes, even more good news to share:  A few weeks ago I applied for a new job within Regional Health.  I was offered the job on Friday and accepted it.  My new position is “Hills Market Supply Chain Supervisor”.  Its a promotion and an exciting new challenge.  I see very positive change taking place within our healthcare network and I’m proud to be a part of it.  I will continue to be based out of Spearfish.

I was reading an article today and the author was sharing how he decides to buy a book.  He commented that he has been guilty of buying a book for its cover (me too!), or because it was recommended by a friend (me too!) or because its had great reviews and was the “hottest” new thing (Unfortunately, me too. This one is always bad reasoning and the book is rarely as good as the hype.)  Moving on…..he now looks at the acknowledgements. In doing so, he discovered that producing a book worth reading is a lot like growing a life worth living.  He states, “What is worth doing is seldom done easily, and rarely done alone.”  The best stories don’t involve just one person.  Acknowledgements show us who made a difference in their life.  The people who influenced them.  The article closed with two questions:  Who’s on your acknowledgements page?  Even better – on whose acknowledgements page would your name appear?  This is what I’m thinking about today.  I’m mostly aware of the people who have influenced my life (and I’m sure some of them would be surprised to be on the list), but I’m not always aware of the effect I have on the lives of others.  Occasionally, I will have someone tell me that something I’ve said or done made a difference in their life.  What surprises me most is that the words they remember so vividly, I simply don’t always remember saying them.  I had this happen to me recently and the words I had spoken (and then forgot I said them) were still very much in line with what I believe and live today.  It got me wondering though, what have I possibly said in the past that may have affected someone profoundly but its something I no longer believe or live?  What have I possibly said or done that may have negatively affected a person’s spirit?  Who and what have I been along this path of life that may not have always reflected positively on others?  I send prayers through time (I’m pretty sure God can do that) to heal anyone that may have been hurt by something I’ve said or done.  There’s too much hurting in this world and I don’t want to be a part of that.  I want to be part of the healing.  Part of the good stuff.

One final awesome thing from the week:  My favorite seasonal beverage!  Many of you are aware that Tom and I are craft beer drinkers.  Our palettes normally tend to prefer the darker beers, especially a nice Imperial Stout aged in Whiskey barrels.  What a surprise then, to discover that one of my favorite seasonal beers is a honey ale brewed by Squatters Craft Beers (their motto is, “good for what ales you”).  It’s called “Bumper Crop Honey Ale” and it is brewed with lavender.  We just call it my lavender beer.  I totally missed my calling when it comes to the descriptive verse on coffee and beer labels.  They have become a literary delight.  Here’s the one from Bumper Crop:  “Like summer in a bottle, Bumper Crop starts with the gentle aromas of freshly gathered lavender and features local honey for a soft, slightly sweet finish.  At 5.5% alc/vol, it simply tastes bee-yootiful.”  Yep, it does. No wonder it sold out fast and is already hard to find.  I have a little stash of the elixir though and have been enjoying the evenings sipping my lavender beer with my husband out in our backyard.  Life’s simple pleasures.  (yes, my oncologist said it is fine to enjoy one or two a day).

Yes, its been a very good week!

It’s now been a little over two months since the zebra (otherwise known as my gastro-intestinal stromal tumor/GIST) was removed.  I have been back to work for over three weeks and the lifting only 15 pounds weight restriction was removed last Monday.  When I first returned to work, the six weeks I’d been out on medical leave felt more like months than weeks; I had trouble bending over, I got tired easily and my abdomen was very tender.  Now it feels like I was never gone from work, I can tie my shoes without discomfort and at times I even actually forget that I had abdominal surgery.  The abscess still lingers but is much smaller – only about 2 inches of 1/4″ gauze packs into it now.  My surgeon is annoyed that it hasn’t closed completely yet (and in all honesty, so am I!).  She is giving it one more month to close up and if it’s still not completely healed, she wants to bring me in for “day surgery” to intervene and surgically close it.  I’m praying it closes up on its own.  I’m not too excited about any more cutting and stitching in the abdominal area right now!

So, its now time to move on to the next phase of adjuvant therapy.  Since the pathology of the tumor indicated high risk of recurrence, I will be taking a drug for the next three years to hopefully prevent any additional future growth.  No more zebras in my zoo!!  I picked up my prescription of Gleevec and will be starting it next week.  Gleevec is a Tyrosine-Kinase Inhibitor (TKI) and is a specific, targeted therapy.  There still could be side-effects but I’ve been told it is generally well tolerated. (The following is from one of the many sites I’ve found since I started researching GIST and Gleevec: Tyrosine kinase inhibitors (TKIs) are a class of chemotherapy medications that inhibit, or block, the enzyme tyrosine kinase. TKIs were created out of modern genetics – the understanding of DNA, the cell cycle, and molecular signaling pathways- and thus represent a change from general to molecular methods of cancer treatment. This allows for targeted treatment of specific cancers, which lessens the risk of damage to healthy cells and increases treatment success.) 

Since nausea is one of the primary side-effects, I’ve been trying to decide what time of day I will take the pill.  They say to take it with a meal and a full glass of water.  I was thinking about taking it in the evening and then sleep through any discomfort.  Except, I don’t sleep as well as I used to and I think that the evening hours might make me more aware of side effects if they happen.  If I take it with my morning protein smoothie and then go to work, the activity of the day and being busy could keep the side effects at bay.  I’m sure its different for everyone and I’ll just need to play around with it to see what works.  So, I’ll either be starting it this Monday evening or Tuesday morning.  I will then have monthly labs to check blood levels and liver enzymes and CT scans every 3-6 months to check for signs of re-growth.  In all honesty, I’ve simply had too much time to think about it and I just need to get to the “taking” part if that’s how it needs to be.  Many GIST patients are on 800mg of Gleevec and have to take it twice a day.  I’m only on 400mg and am blessed to even ponder the dilemma of when to take the damn thing!  I know its important to be aware of the side effects and take precautions when necessary (like my new flap hat and mega sunscreen because the sun can wreak havoc on the skin and rashes/swelling/blistering are another side effect), but a part of me wishes I was blissfully ignorant and not the “need to know” type that I am.  Although, I am my own greatest patient advocate. I arm myself with knowledge so I can live this incredible life I have been blessed with to my fullest potential.  That being said, I often wonder if I’m a walking nightmare to the medical community who has to deal with my pestering questions!

“I know the plans I have for you” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

“We can be tired, weary and emotionally distraught, but after spending time alone with God, we find that He injects into our bodies energy, power and strength.”  – Charles Stanley

This was a big week for me – I went back to work on Wednesday.  I had a bit of a scare early in the week with a sharp pain in my abdomen.  It started over the weekend and by Tuesday it was bad enough that I figured I should probably check in with my doctor.  She thought that I had probably just overdone it in my preparation to be ready to go back to work (what?  I shouldn’t be lifting weights yet?!?) but ordered an abdominal CT scan just to be sure that it wasn’t something else like fluid collection or (please Lord, NO!) another abscess.  So, my first day back at work also included a delicious vanilla smoothie bottle of barium for “breakfast”, a little contrast for good viewing and no alcohol or caffeine the rest of the day/evening to celebrate my first day back.  Thankfully, the CT scan came back clear and I just need to be a bit more careful as I ease back into daily duties.  I am allowed to lift 15 pounds and I have tested this with three of my 5 lb. dumbbells so I know how much 15 pounds feels like.  One of my co-workers even double-checked my estimating ability with a package she thought exceeded my weight limit and it came in at 14 lbs!  I am very fortunate to have such incredible co-workers that are helping me gently work my way back into work.  The days were busy and went by so very fast.  I’m glad my first week was only three days long and I’m feeling ready for a full 5 days next week.

Abscess update:  The initial opening is getting very small but its still about an inch deep so the daily packing continues.  Tom  gives me an update as he’s working on it and he feels that its getting smaller and smaller every day.  We have decreased from 5 feet of 1″ gauze to about 12 inches of 1/4″ gauze with each packing – so that’s a great improvement!  We will definitely have to have a big fun celebration when its all healed and sealed!

Some of you have met or know of our dog Angel.  The girls and I brought her home from the local shelter over Labor Day weekend back in 2002.  We are her rescue family (as in, she rescued us!) – and like all angels, she was literally a gift from heaven.  They thought she was about 6 months old when we brought her home.  She had been abused, but we didn’t know that until we got her home.  She was terrified of men, didn’t bark and didn’t know how to play.  Over time, she learned that not all men will hurt her, found her voice and discovered how to prance around with invisible fairies and jump high fences (so the thousand bucks I spent to install a fence around our yard to keep her in and “safe” was pretty much a waste of money!)  She made many trips back and forth to Minnesota with us during the winter of 2002 and into late summer of 2003, in my Mom’s last year of battling lung cancer (could also be referred to one of the best years my family experienced together, along with many good friends who visited and shared in my amazing Mother’s last months).  Ok, back to the dog………Angel took to my Mom right away and Mom definitely took to Angel, too.  Any conversation with Mom before we were heading home to be with her included Mom saying, “Now Tracy, you bring that dog with you.”  Angel carefully walked over Mom’s oxygen tubing and not on top of it.  The tubing traveled down a hallway and through two rooms from the concentrator to Mom’s nose, so it was pretty cool that Angel just instinctively knew that it was something not to be messed with.  She would lay down behind Mom’s chair and then under her upstairs hospital style bed when Mom could no longer make the trip downstairs.  One time we even went into Mom’s room and Angel was on top of the bed at her feet.  We were told that she had been invited there because Mom wanted the dog to be closer.  That connection to my Mom alone makes this a special dog to me.  She went through that with us.  Over the last 13 years, Angel has been through everything with us.  She was 5 years old when Tom and I started dating and now my husband has discovered what it is like to fall in love with a dog (no ugly comments about his wife, please. That would so take me back to junior high mean boys).  Angel turned 13 this Spring and the senior years are now upon her.  Her hearing slowly eroded and now she is completely deaf.  Nope, she’s not just ignoring us!  She moves slowly and steps are pretty much impossible, so Tom built her a ramp over our deck stairs so she can get down to the yard.  She started developing tumors and growths and now has so many that anywhere we pet her, we feel a lump.  She was diagnosed with Cushing’s disease last fall.  It is likely from a tumor pushing on her pituitary gland which then causes the adrenal glands to produce too much cortisol.  We have been treating her with a chemo pill since last year.  She is a very special dog and she now requires very special and tender care.  I have had dogs all of my life but this is the first one that has lived into these older “senior” years.  It is both beautiful and very sad at the same time.  She does not show signs of suffering.  She never cries or whines.  She can still get up and has an appetite and great thirst.  She even chased the marmot for about 10 feet the other day and I’m certain I saw her laughing!  The reason I bring all of this up is that with everything she has been through and continues to go through, she still “smiles” and enjoys every bit of life the day brings to her.  She inspires me daily.  Yes, my dog is one of my greatest inspirations.  An animal that can neither speak or hear, yet she knows more about me than most people do.  I know she hurts and I know she’s starting to forget things, yet she is aging so gracefully and is dealing with a serious disease in such an amazing way.  I realize that she is ignorant to all of this information and doesn’t process it the same way as we emotional humans do.  Maybe in this situation, ignorance really is bliss.  Although I have never thought to consider a dog as ignorant.  Mainly they have an even keener awareness of their surroundings and what is important.  Love.  Unconditional Love.  Our Angel is still a happy dog and she always brings a smile to my face no matter what the day brings.  I’m just very thankful for her and the time we continue to have with her.  It seemed worthy of mention.

I read several books while I was on my medical leave.  I love to read and it was wonderful to have the time to soak up the stories.  I also started reading some poetry.  I’m really not all that fond of all poetry but I am impressed by a poet’s ability to use few words to describe a grand visual or idea.  Actually, I’m in awe of it since I use many words to describe the very small and simple.  Lately, I have been reading the poetry of Mary Oliver.  Her words stir my emotions and my mind is filled with the visuals that her words describe.  I discovered her quite by chance when a portion of one of her poems was shared by another author that I have as a Facebook friend.

So, today I end my ramblings with the clear words of poet Mary Oliver.  This one is a four part poem called, “The Fourth Sign of the Zodiac” from her book “Blue Horses”.

The Fourth Sign of the Zodiac
by Mary Oliver

1.
Why should I have been surprised?
Hunters walk the forest
without a sound.
The hunter, strapped to his rifle,
the fox on his feet of silk,
the serpent on his empire of muscles—
all move in a stillness,
hungry, careful, intent.
Just as the cancer
entered the forest of my body,
without a sound.

2.
The question is,
what will it be like
after the last day?
Will I float
into the sky
or will I fray
within the earth or a river—
remembering nothing?
How desperate I would be
if I couldn’t remember
the sun rising, if I couldn’t
remember trees, rivers; if I couldn’t
even remember, beloved,
your beloved name.

3.
I know, you never intended to be in this world.
But you’re in it all the same.

so why not get started immediately.

I mean, belonging to it.
There is so much to admire, to weep over.

And to write music or poems about.

Bless the feet that take you to and fro.
Bless the eyes and the listening ears.
Bless the tongue, the marvel of taste.
Bless touching.

You could live a hundred years, it’s happened.
Or not.
I am speaking from the fortunate platform
of many years,
none of which, I think, I ever wasted.
Do you need a prod?
Do you need a little darkness to get you going?
Let me be urgent as a knife, then,
and remind you of Keats,
so single of purpose and thinking, for a while,
he had a lifetime.

4.
Late yesterday afternoon, in the heat,
all the fragile blue flowers in bloom
in the shrubs in the yard next door had
tumbled from the shrubs and lay
wrinkled and fading in the grass. But
this morning the shrubs were full of
the blue flowers again. There wasn’t
a single one on the grass. How, I
wondered, did they roll back up to
the branches, that fiercely wanting,
as we all do, just a little more of
life?

Eleven days from now I will return to work.  My mind is very ready.  My physical body is straggling just a touch behind.  A lot of healing and strength-building can happen in eleven days though and I’m doing a bit more each day to prepare myself.  I plan on having myself up to 10,000 steps a day when I go back to work.  Right now, I’m not allowed to lift more than 5 pounds and am very limited in the exercise I am allowed to do.  I’m not sure if I will be able to go from limited to everything by the time I go back to work, but that is my understanding.  I hope so.  Yesterday, my trusty Fitbit told me that I was just 3 steps short of 6,000.  If I’d known that, I would have made a quick trip to the bathroom right before Midnight just to put me over 6,000!  I also evidently walked up 18 floors!  Considering we live in a one level home, I have to assume that my trusty Fitbit is counting the “hill” (actually more of a gradual slope than a hill) in our backyard as a “floor”.  I did walk up and down that hill many times yesterday.  I am quite certain that actually climbing 18 flights of stairs would bring me to my knees!  It might even make me cry.  I’ll take the number though and count it towards my daily improvement!!

After several weeks of experiencing the thrill of living in yoga pants and L.L. Bean Wicked Good slippers, I have graduated to “real” clothes and shoes.  It helps that I’ve lost a few pounds (up to 17 now – yay!!) so my “real” clothes fit a little better – mainly looser around the middle where I’m the most sensitive to the tight stuff.  I’m still not driving but I think I should be able to start soon.  Driving has a way of making a person really feel alive and free!  Ask any teenager.

Last summer, Tom and I were trying to get out and do a “real” hike every weekend.  Not just walking, but real “hiking”, with hills and everything.  One hot summer day, we drove out to Deerfield Lake and hit the trail.  It’s a 12 mile hike around the lake and it was already after noon when we got out there, so we didn’t plan on doing the entire hike – just down the trail a bit and back to get out into the beauty of our surroundings and sweat a little.  We were about a mile or so in and had just hiked up a steep incline – the kind you grab tree roots to keep your footing, and were panting at the top taking a “catch your breath” break.  We took the opportunity to go out to an outcropping over the lake and allow our lungs to gather in the fresh breeze.  We could see kayakers gliding silently across the water and others enjoying the beauty of the lake and forested surroundings.  As we were making our way back to the trail, an elderly couple had just reached the top of the afore mentioned steep incline and they weren’t even breathing hard (did I mention they were elderly?).  They both had trekking poles and were outfitted in light khaki and sensible headwear.  They had hit the trail at 8am and were close to the end of the full 12 mile hike.  Did I mention they were elderly?  We talked for a short time and then they kept going their way and Tom and I headed back to our car after looking at each other with that “we are truly pathetically out of shape” look that we give each other now and then.  This was not the first elderly couple that has showed us up on a hiking trail.  It happened once before on a Volksmarch out at Crazy Horse Monument.  That particular instance was a retired couple that traveled the country and hit every Volksmarch they could.  They were physically fit silver-haired hikers.  Tom and I decided at that moment that we wanted to be like them.  We also decided that we didn’t need to wait until we retired to make the time for it.  We have made a valiant effort, but not valiant enough.  Our life cannot be about wearing ourselves out at work so that we can’t move in the evenings and on weekends.  It just can’t be.  I don’t want to wait until I retire to enjoy the gorgeous surroundings we live in and be physically fit.  I don’t want a stupid tumor and the potential of re-growth to stop me from living my life to the very fullest in every single moment.  I want to wade in more streams and hike to as many waterfalls as I can find. I’ll have to don a good hat and wear long sleeves though since the drug I’ll be taking calls for precaution in the sun.

Speaking of the drug I’ll be taking (Gleevec).  I have gone on-line and looked into some of the support groups available.  For such a rare condition, I’m amazed at the volume of info available on the internet.  This particular drug is used for GIST (what I have/had) and also for a type of leukemia and other more severe situations than what I am currently experiencing.  At least for now, its better for me to avoid the assault on my imagination that these sites cause.  It’s good for me to be aware of the possible side effects and potentially beneficial info to combat those effects, but not to be drenched in the negativity.  Especially weeks before I even start taking it! (I’m scheduled to start taking it at the end of July, when I’m completely healed from the surgery).  While I have pulled a few good suggestions from these sites, I have noticed that the people with the worst experiences are the ones who post the most.  It makes sense, they are looking for some relief and anyone who can relate to what they are going through and possibly help them.  Pain relief does not always relieve us from the suffering.  For now, its best for me to concentrate on my daily devotions and focusing on the One who can help me the most through this trial.  In all honesty, I have known people that suck more life out of me than that tumor did.  I expect the treatment will be the same.

Since I am trying to spend more time up and about, I have transitioned from reading to creating.  I spent a few hours in my studio yesterday and was finally able to finish a pattern for a glass project that has been eluding me for many, many months.  It was literally a breakthrough to allow the creative juices to start flowing again.  In fact, that’s where I’m headed when I’m done with this update, to work on a few more designs and then see if I’m ready and able to start cutting some glass.  Nothing more healing to this body than getting into my studio and working with glass.

An update on the abscess:  Its still there but we can see daily shrinkage now.  It’s still surprisingly deep, but Tom thinks that’s getting better, too.  My doctor told me last Monday that it could be a month before it closes up completely.  Unfortunately, that means I will be heading back to work with a hole in my abdomen.  Oh well, I know I’m not the only one.  It happens a lot and there are people all over in our every day world that are walking around with medical issues  that we have no clue they are going through.  If nothing else, I am even more aware of that now than I was before. In essence, be kind to everyone, for we are all living through our own trials and NICE MATTERS.

After a few days of rain, rain, rain…..the sun is out and its a BEAUTIFUL DAY!!  Although, when the clouds are low, moving through the hills as a quiet mist, it smells so crisp and clean and has a beauty all its own.  Each day brings its own beauty.  Sometimes we just have to look a little harder.

Well, I met my oncologist yesterday and it sounds like we’ll be having monthly dates for the next several years.  Not what I was hoping for, but it is what I was told to expect.  My surgeon seriously knows her zebras when she sees them!  (refer back to first blog if that comment makes absolutely no sense.)

We spent almost 3 hours at the Cancer Care Institute yesterday.  Got my own name tag and everything.  I will be starting an oral drug when I’m completely healed up from surgery – the oncologist wants me to start it no later than the end of July.  I will have to take the drug (called Imatinib or “Gleevec”)  daily for three years (it used to be for one year but they are finding that the results are better if taken for three years), plus CT scans every 3-6 months, plus the monthly date with the oncologist and monthly labs to stay on top of some of the potential side effects.  So, I guess this will be my new normal.

A GIST (Gastro Intestinal Stromal Tumor) is a very specific type of tumor and the drug I will be taking is specifically targeted at blocking the action of the abnormal protein that signals the cancer cells to multiply.  They have determined that the risk of recurrence in my situation is extremely high because of the larger size of the tumor and something called “mitotic rate”;  mine was over 10 and anything over 5 is considered high risk.  Basically, the drug is to prevent recurrence because all evidence shows that they got everything out during surgery and all tests show it hasn’t spread anywhere else.  I really can’t express enough how fortunate I am in this regards.  Also, I have not had any organs affected – this is also exceptionally fortunate and I count it as one of many blessings that have occurred since this all began.

I’ve had a bit of time on my hands, so I have spent many hours reading whatever I could find about gastrointestinal tumors and treatment options.  I am the queen of research.  I quite possibly have more information than is healthy for an idle mind to harbor. I prepared a very long list of questions so my oncologist would have something to talk about.  Turns out, he was extremely thorough and went over everything during the appointment, literally answering all of my questions without ever having to refer to my list.  Either he was warned about me in advance, or they treat every patient with this type of knowledge and respect.  He had everything at his fingertips – we looked at CT scans, surgical reports, pathology reports and the NCCN (National Comprehensive Cancer Network) Risk Assessment Guidelines and post-operative treatment.  He explained exactly why he was pursuing this course of treatment.  He acknowledged that there are numerous possible side-effects but also said that it is normally well tolerated.  I then met with the “Patient Navigator” – she’s the one who handles ordering the prescriptions and the “go-to” person during treatment.  Then the PharmD came in and went over all the information regarding the drug, possible side effects, precautions, etc.  Very, very complete and detailed visit!  They monitor very closely for some of the more serious symptoms.  I am very aware that the location of my tumor was a best case scenario, outside of the organs and just pushing on them in the space between.  If there is a recurrence, I may not be as lucky next time.  That part was a wake-up call for me.  I spend a lot of time in conversation with the Lord.  I try real hard to listen.  I put my life and all of this in His very capable hands and trust that each step is guided by Him and He is working through everyone who is caring for me.  He shows me signs along the way that leave me smiling and saying, “Thank you, God”.  I know and trust beyond a shadow of a doubt that He’s got my back.

For those that are into specific prayer requests, mine would be that I tolerate the drug well; for no side effects and for the drug to work at blocking any further tumor growth.  And, for my family to release any anxiety that this may cause them and know that all is well.   I trust and believe that our awesome God transforms trials into blessings.  It’s what He does.

An update on the abscess:  It’s still “open” and my sweet husband has been packing it daily – it’s our new evening ritual.  Not at all romantic but definitely intimate!! I’ve learned not to crack jokes while he’s at work because laughing greatly impedes the process and kinda hurts!  We are down from 5 feet of gauze to 3 feet, so it’s closing slowly.  Certainly not fast enough in my opinion!!  My doctor assures me it should be closed up by the time I’m scheduled to go back to work.

I’m craving pizza.  I think that’s a good sign!

In early April, I had my yearly physical and my fasting lab results came back pointing their naughty finger at me.  YOU have high cholesterol!  YOU have borderline diabetes!  I also knew I had a pain in my gut that felt like a tennis ball stuck in my sternum.  I figured it all resulted from poor eating choices and not enough exercise. I had to lose weight.  The pounds had been slowly adding up over the years and I was at the highest my weight has ever been – including when I was 9 1/2 months pregnant!!  I started reading about insulin resistance and glycemic load.  It made sense.  A lot of sense.  I changed a few eating habits and started getting some more exercise.  The exercise part was difficult for me because my job has me on my feet all day long……lifting, bending, walking, walking, walking.  Unfortunately, none of that activity counts because you have to exercise in ADDITION to your normal daily movement.  Our bodies get used to our daily “exercise” and demand more if we want to lose weight and shape up.  Problem is, my feet hurt so bad by the time I get home that walking more is very difficult.  Gosh, I sound old!  Tom and I still try to get out on the trail at least a few days a week when weather permits.  Or, just go walk the streets of Deadwood briskly to get some activity. We have bikes but have not been good about getting on them enough (we live in the “hills” and uphill on a bike is so much harder than walking!!! The only good thing about it is turning around and going downhill!)  Gosh, I sound old and out of shape!!   We bring our bikes inside during the winter and put them up on “trainers” so we can ride inside.  They sit there in our spare room making us feel guilty.  Its boring and uncomfortable and I just plain hate doing it.  So, I don’t.  Ah, so this is why I feel old and out of shape!!

One Saturday morning when we were out visiting local garage sales, we found a semi-recumbent exercise bike that was practically brand new and being sold for a very reasonable price.  It came home with us.  It is comfortable, whisper quiet and gives all sorts of stats, including heart rate when your hand is on the sensor.  I absolutely love it!!  I burn and sweat and push myself because I love it and I can feel it “working”.   I can easily ride for 30 minutes while watching TV and 45-60 minutes while reading a book.  Who knew that I could burn so many calories while reading a book?!  I started doing some simple arm toning with weights. I eliminated starchy carbs like white rice, white potatoes, most bread and “bakery” goods from my diet, walked and rode my fun new bike, and was able to lose 10 pounds before my surgery.  I know that my recovery has gone better because of it and I so look forward to getting back to my exercise routine when I’m able and allowed to.  My original goal was to get my bad cholesterol and glucose levels down with lifestyle changes and to avoid taking medicine for it.  My new goal is to get myself in excellent physical health so that when I retire, I can still hike back to hidden waterfalls and have lots of energy and good health to do all the things I want to do and all the things I don’t even know yet that I want to do!

Several years ago, I had an excruciating bout of sciatica.  The triggers and pain routes of sciatica seem to be a little different for everyone.  Mine was much worse first thing in the morning and also when sitting.  Tom would slide ice packs under my back for 20 minutes every morning before I could even think about getting out of bed.  I avoided sitting whenever possible.  Long car trips were practically impossible and required lots of stops.  I discovered that deep growling helped relieve the pain and would growl while I drove.  Yes, growling.  It works.  Try it next time you are in pain and you’ll understand.  I avoided any type of activity that required sitting (movies, restaurants, etc.) and would stand for meetings, church, and other events that normal people sit for.   After months of physical therapy, traction and a prescription strength anti-inflammatory called Mobic, I had the pain level down to tolerable and manageable.  To this day, I stand whenever possible.  I stand so much that it makes people uncomfortable.  My desk at work is set up for standing.  I still do my stretches and have a home traction device for flare-ups.  I have tried to go off the anti-inflammatory several times but the symptoms come back so I continue to take the stupid little pill. I was able to reduce the dosage, but I can’t completely stop taking it.  In fact, I have now discovered that the anti-inflammatory is also working at reducing symptoms of what is evidently arthritis.  When I have to stop taking the pill (for medical reasons like CT Scans, scopes and surgery), the first thing that starts to hurt are my feet, knees and joints, then the sciatica pain starts to creep in.

So, this brings me to the semi-frustrated place I am in right now.  Idle-ness.  I really don’t do it well.  I even planned for it with lots of books, movies and art projects at my fingertips.  I have been sitting for almost three weeks now.  Plain and simple, the act of sitting “hurts”.  My ribs are sore.  My back is sore.  My feet hurt more from sitting than they do from walking!  My right knee aches all the time and makes me limp like an old woman.  I had to stop taking the Mobic (anti-inflammatory) a week before my surgery, so I was already very sore by the time I went under the knife. I also had to stop drinking my morning protein/probiotic/vitamin shake and taking all of my vitamins a week before the surgery.   I also had to do a bowel prep before surgery, so I was dehydrated when they went to find a vein for the IV.  I have several unsuccessful sites and also had to have the IV moved three times post surgery.  One of those veins is extremely sore and also seems to have affected my elbow joint on my right arm, causing pain every time I move it.    Wow!  I’m really starting to sound like a whiner!  My main point is,  most of my current aches and pains don’t have anything to do with my abdomen or the actual surgery.  I still have an open hole in my stomach from the abscess that is being packed daily.  It’s sore and definitely inconvenient, but is not my main source of pain.  In fact, I really think if I could start taking the Mobic again and move more, I’m sure I would feel so very much better!  It all hinges on a stupid little pill and I hate that!  The only exercising I am allowed to do is walking, so I have tried to increase my steps each day.  I’m still weak and its easy to overdo it.  I have been reducing the pain med (Percocet) over the last several days, but can’t eliminate it completely just yet.  I feel good enough to be upset with not feeling better.

Tomorrow marks three weeks since my surgery.  I go back to work in three weeks.  Right now, I can’t even imagine having the strength and energy I need to meet my normal work day, much less walk from the parking lot to my office!!  I know that God meets me in this moment.  The one I am experiencing now.  He has never failed to provide me with the strength necessary to meet whatever I am going through.  The only time I don’t feel His Peace with me is when I start projecting into the future or worrying about something that doesn’t exist or hasn’t happened.  I want to imagine a time when I am stronger and physically able to do more, but really all I need is the strength for today.  The mood I’m in is mine to choose.

I have an easel and canvas set up in my studio, next to the window overlooking our backyard.  Glass is my normal medium, but today I choose paint.  I don’t have the energy or strength for glass yet.  Paint flows easily and the colors will lift my mood.  The view out my back door reminds me of the beauty I am surrounded by and my place in it.

Shelby just walked in the door.  I feel better already!!!

SEVERAL HOURS LATER…………(I named Shelby’s painting “peace” and she named mine “serenity”.  Those two words pretty much sum up the day with my daughter.  Thanks Shelb!)

Each day I accomplish something.  Yesterday, I paid some bills.  Today, I loaded up 6 suet feeders and put together an easel.  I read some, then nap for awhile.  I write some, then nap for a bit.  I’ve watched 7 episodes of Outlander.  I read the books years ago, back in the 90’s.  I’m surprised by how much I remember.  I’m studying for a certification exam but my heart really isn’t in it right now.  It will come.  I still have several weeks.  I walk my internal path from back to front, front to back.  Watch the birds.  The doves are back.

The phone rings.  I don’t recognize the number but something in me knows who it is.  I answer.  I was right.  Regional Health Cancer Care Institute.  There’s that c-word I have been so delicately dancing around.  They have called to schedule an appointment for next week with the oncologist.  I remind myself that I don’t really know what that means until I meet with him, find out what he has to say………find out what C-Kit positive really means and does it matter that it’s only “weakly positive”.  Show me the lab results and explain them so I understand.  When is a zebra just a zebra and when could it possibly be a unicorn?  What are the interstitial cells of Cajal and are mine really all that different?  In the garden of my digestive tract, was the GIST a perennial or an annual?  Or maybe just an isolated weed.  I call Tom to see if he can take the afternoon off and go with me.  I’m not driving yet.  Even if I were, I would want him there with me.  At least at the first visit.  I still feel strong and at peace, yet my voice trembles.  This little dose of reality kinda takes my breath away.

We’ve had thunderstorms for the last several nights.  The rain falls hard and heavy.  Flashes of light and rolling thunder.  It does not matter if my eyes are closed or if they are open……my world feels slightly surreal.

Our water pressure finally came back yesterday (Monday) morning.

I try to never take our glorious water supply for granted.  I’m very aware that other areas of our world do not have the same access.  Never have and likely never will.  Other parts of the world have had it, but are extremely low and rationed now, like California.  Some have way more than they want and the flooded conditions actually make clean water unavailable.  No matter what our access, we as humans, depend on it and thrive where it is found.  We never lost water in our home, and the trickle that we did have was able to get cold, or warm, or hot – whatever we wanted it to be. Our toilets flushed.  I was even able to wash a small load of clothes without hiking down to the stream.  I really did not suffer in any way.  I simply lacked what I was used to having.  I was “inconvenienced”.  Not necessary like camping post-abdominal surgery, but kind of like that.  Just a little.

I have always noticed the little things and treasured life’s simple pleasures.  My mom pointed it out to me when I was very young and I haven’t stopped since. Glancing out into my backyard in the morning, I lose myself in the activity.  Woodpeckers, yellow and red crossbills, robins, blue jays, sparrows, juncos, starlings, wrens, finches, nuthatches, grackles, chickadees and so many more.  We have a beautiful western tanager that just arrived back this year and a turkey who has been visiting early mornings and some evenings to scratch the ground for fallen seed.  We have a single red squirrel that I’m sure is posing for some of the pictures taken on our trail cam.  He’s glam!  And recently, we have an adorable marmot who has come to visit.   Life is everywhere.  Movement, motion, commotion – it all marches on whether I’m looking or not.  Oh, how I love to watch.

I feel like I’m missing chunks of time.  A big chunk while I was in the hospital for 8 days. Those initial days, I barely remember……..just snippets of time like opening my eyes and seeing Shelby with her cup of coffee, gliding in and slipping quietly into a chair, softly saying “Hey” when she sees my eyes open.  Her presence guided me back.  Or, the moment I would feel Tom next to me, kissing my forehead.  When I count my blessings, I count this man twice.  I vaguely remember my sister and her husband being there, although I knew how much they were doing in the shadows…..preparing meals, being with my husband and girls and helping with Angel.  They were here for a week being literal saints while I slept the days away in a fog.  I remember Shannon coming by and giving me my birthday present, a Kindle Fire.  Frequently, I would wake up to the thought of having a Kindle Fire, a Fitbit and the new Charles Martin book waiting for me at home.  The hospital does have a few memories of pain and discomfort, althoughh they are distant and vague.  Mainly, I remember walking a lot, and I remember those who took the time to walk with me.  Those angels who came into my room at all times of day or night, interrupted from whatever they were doing before I rang, to tend to all the things I could not do for myself.  I loved walking the halls in the middle of the night.  I wanted to get stronger, I wanted to get better, and walking was one of the biggest keys to opening that door.  The quiet and dim of the night seemed to hold me up and gather around me in a healing way when I would walk.  Like a reversible coat, it had a different color and feel when in my room.  I lived on ice chips alone for five days, wasn’t even hungry and somehow still found the strength to walk.  Probably won’t be able to market that diet, though!

The wound packing has been going fine. We were both pretty nervous that first time.  It’s just plain weird to have an open wound like that.  You’d think I’d be bleeding all over and spilling my innards out.  Sorry, that was kind of graphic.  When I removed the initial packing, it was 62 inches long!!! Holy Cow!  That’s over 5 feet!!  The wound is only about 1 1/2 – 2″ long and about an inch deep.  Where did it all go?!?!  I guess the idea is that it will take less and less each day and eventually close up on its own.   It does feel like a setback but shouldn’t change my expected return to work on July 1st.  I got the rest of the staples out yesterday.  Shelby took my list and did our grocery shopping for us while we were at the clinic and even delivered it to our car in coolers.  Thanks Shelb for spending your one day off of work in the aisles of Walmart for your Mama!

My surgeon has referred me to an oncologist for the next “phase”, so I guess I should be expecting a call in the next week from them.

That’s all for now.

Good thing I’m over the bikini days!  Although, I could eventually turn this scar into a really great tree tattoo.  Ouch.  No stomach tattoos for me!!!

All is still going pretty well.  Over the last several days, as my incision heals, there was a hard part towards the top.  I figured it was probably scar tissue forming, so I Googled it and the scar tissue explanation came up for many posts on “healing wounds”.  It was about the size of a big marble, didn’t really hurt and was not hot or profoundly redder than other healing areas of the incision.  Yesterday that all kind of changed.  It seemed redder, and bigger, more annoying and a little suspicious.  Like I’d traded a soft tennis ball for a hard golf ball.  When I woke from an afternoon nap, I looked at it again and thought, “Crap, it’s Friday afternoon and if this gets any worse, I’m going to end up in the ER over the weekend!”  Don’t these things always happen at night and on the weekends?  I took a picture and sent it to my sister.  She and her husband had travelled here from Minnesota for my surgery, so she’d seen the incision when I was in the hospital (not only seen it, but sent a picture of it to many family members!!).  She also thought it had changed and wasn’t looking “right” and told me to get in to the clinic.  So, it’s 3:25pm on a Friday afternoon and I called the clinic.  The nurse, thankfully, called back within 10 minutes.  (thanks Laura!!!!!)  My surgeon just happens to be on call (seriously, Thank you God!!) and she said I absolutely should come in.  Actually, they wanted me there by 4:15pm and that was impossible.  She asked if I could get there before 5pm.  We live in Lead and the Clinic is in Spearfish.  Tom’s work is in Spearfish.  So, Tom had to drive from Spearfish to Lead, (through construction zones in Deadwood that have 20 minute delays) and get me back to Spearfish.  An average round trip would be 60 minutes, not including construction delays.  I called Tom at 3:38pm and he headed up the hill at 3:41pm to retrieve me.  There was no delay through the construction and the road had been graded, so it was relatively smooth (we’ve been taking a longer detour to avoid the bumps.  Ouch!).  He pulled in front of the house at approx. 4:07pm.  He informed me about the road and really thought it would be quicker to go through the construction.  I completely trusted his opinion and we went for it.  He was right and he pulled up to the front door of the clinic at 4:30pm.  No speeding, no driving like Mario Andretti.  It was like time had “warped” for us. It seemed to me that it was yet another piece falling into place.  The thought of what I figured was about to happen made me cringe with an anticipatory pain, but I tried to push that thought from my mind.  It did end up being an abscess, full of the four letter P-word that abscesses are full of.  Tom came in with me and watched as my doctor cleaned it out (yes, ouch!  and understandably gross) and then packed it with Iodoform packing.  This will now be my sweet husband’s daily job for like the next three weeks.  I asked him, “Will you be able to do this?”  and his reply was, “Will you let me?”  (specific prayers today at 3pm MST would greatly appreciated!!).  I have also added two antibiotics to my arsenal of medication.

We are on day three without water pressure.  At least we can take “gravity” showers and the water is hot. I mean really, it could be so much worse!!  Sounds like it will be this way at least through the weekend.

One more thing of interest to share today: The pathology report is back from Mayo.  It IS a GIST (gastrointestinal Stromal Tumor).  A GIST is like the “little brother” of sarcoma (as opposed to carcinoma, which is more of a monster).  It did have a “high malignant potential” so when I heal up from the surgery, I will be referred to an oncologist.  Won’t know exactly what happens next until then, but it sounds like this type of thing is usually treated with an oral medication (not chemo).  I see it as a preventative and precaution, similar to not feeding an adorable Mogwai after Midnight, no matter how much he begs, or you’ll end up with a naughty, troublemaking Gremlin!  This type of tumor generally stays in the intestinal area and doesn’t metastasize to other areas of the body.  This is all very good news and remains “best case scenario”.  Oh, and the gastric margin where the mass was removed was negative. Negative = good.

I had forgotten that she also found a spot on my liver during surgery  (they told me about it during that “don’t tell her anything she needs to remember” time and never mentioned it again) and removed it to be tested.  It came back benign and totally unrelated.  More like a “mole on the liver”.

It has stopped raining here after days of mist, drizzle and thunderstorms.  The world outside is full of beautiful hues of green against the intense blue of our Black Hills sky.

Enjoy your Saturday!