New Labels

In the way things go sometimes, I live and die by my medical calendar.  All social events have to fit in between the medical appointments.  This week was a doozy.  I had an appointment on Monday for lab work.  Later that afternoon, I got a call that they had messed up one of the labs and I had to have it redrawn. 

Tuesday I had an appointment with the Gastroenterologist to see how things are actually going.  I showed her my newest GI cartoon: 

She got a good laugh out of that one.  

As far as things are going, labs were stable, and then she told me the one thing I've never heard in my life.  I'm appropriate.  Appropriate?  Appropriate! Wonders never cease!  

A Serious Comedy of Errors

 

So, a couple of weeks ago, we heard that Kevin's brother fell and broke his hip.  Tuesday, this past week Kevin fell and ruptured his quadricep tendon. He had repair surgery on Wednesday and the doctor said everything went fine.  Yesterday my brother's wife fell and broke her foot.  As far as we are concerned, this is enough.  No one else has any permission to do any more damage to themselves.  

What we are looking at is a long slog through physical therapy, starting in about six weeks.  In the meantime, he has to lie on the sofa with his foot elevated and he's bored out of his noggin. I'd say visits would be welcome, but with the combined schedule, it's hard to say when anyone would be home,  However phone calls would be most welcome.  

A Rare Breed, Indeed

 In January, I had a TIPS procedure done.  In February, I had two episodes of encephalopathy that took me back to the emergency room.  Because of this I have had another new drug added to my regimen.  Earlier this month I had an ultrasound to be sure the TIPS is working correctly.  It's kinda not working like it should.  I am having a revision on the 29th.  The encephalopathy is a sign that ammonia is building up in my brain, and my reflexes slow down, I have to fight to find my words, I get argumentative, and I'm just generally hard to deal with.  It's not pretty.  For the month of February, I had a low-grade constant brain fog.  It wasn't until the new medication was added that the brain fog cleared up.  I feel more like me than I have in months. 

My oncologist knows I get my giggles wherever I can.  At my last appointment she showed me that I have been added to the clinic's Team Health designation.  I am still asking where my t-shirt is.  If I am on the team, I should get a shirt at the very least!  

You don't realize how important feeling like yourself is until you have no control over how you feel.  You begin to see how feeling like yourself is such a blessing not to be ignored.  

My new learning curve includes a brand new diet--high protein, low sodium.  It's hard and we have to do a lot of cooking at home.  It's been hard for me to get the 100 grams of protein daily.  It's a lot of work.  Bless my husband's heart, he is ready to jump in and help in whatever way he can.  Tonight it was cooking low sodium Chicken Tikka Masala.  

We had an appointment with the Physician's Assistant for the Gastro-Enterology department of the clinic.  She broke down the information into digestible pieces, including getting the protein intake.   So now I have a blueprint to follow that helps me a whole lot.  No more than 15-20 grams of protein at a time, then let it digest so that it isn't all just sitting in my stomach.  Meals and snacks frequently throughout the day.  If I do a protein powder smoothie, I need to break it up into two servings.  I was using a whey powder, but I am switching to pea protein powder, the whey sits too heavily on my stomach.  I'm learning it, slowly but surely.  

I still fight to not let this be my identity.  I still fight to be me.  But, I wear my faith and hope that will shine through enough for others to see this isn't all there is to me. 

Life as it is Lived, at Least for Me

 Back in December, I visited my gastroenterologist and he was optimistic about my future and felt there was no need to change any of my protocols.  HA!  I showed him.  I didn't want to show him, it really wasn't on my radar, but it happened anyway.  

Last week, I was starting to have black stools and in the wee hours of Wednesday morning, I had a bright purple mess that had lots of blood in it.  I got to the sink, washed my hands, and passed out onto the bathroom floor.  Kevin helped me get up and back to bed.  A bit later, I asked him how alert he was and could he drive to Wenatchee--an hour away.  So we got dressed, he pulled the car to the patio door so I wouldn't have to walk very far, and off we went.  I got to the ER about 7:00 AM and by the stroke of providence, I was the only one in the waiting area.  I was quickly taken back and it just so happened that my gastroenterologist was in the hospital, because he was the one on call.  

After multiple tests, including a CT scan to see if I had a brain 😆, it was determined that I would have an endoscopy, a paracentesis, and a TIPS procedure, as well as a bypass of some blood vessels to the stomach.  The endoscopy showed that the varices in my stomach had hemorrhaged, the paracentesis removed 4.5 liters of fluid, and then the repair work began.  In all of this, there are no surgical incisions, just punctures for tiny instruments to feed through. 

Afterwards, when I was in recovery, my nurse was a girl I had watched grow up, her sister and my daughter were very good friends.  So I got to catch up on how her family was doing.  I was taken from recovery to the Progressive Care Unit--a step down from ICU, but not quite the normal floor.  The nursing care for the five days I was there was fantastic.  During the daytime, I had an RN, an LPN, and a CNA.  At night, just an RN and CNA.  

The lab techs (aka vampires) came by about twice a day to draw blood for labs.  One of them came at 4:00 am and took particular glee in turning on ALL of the lights in the room to draw my blood.  

There are people and places that will always make an indelible mark on your soul, and some of the staff at Central Washington Hospital did that.  I am so appreciative of the care we received through all of them, but some of them went above and beyond.  

My hospitalist was one of a kind.  She answered every question and even went so far as to call my daughter and talk to her to answer her questions, as well.  The day before she discharged me, she came to tell me that she was going home for maternity leave, and she had to go on bedrest.  The day I was released, she came to tell me that she was checking in as soon as she took care of her four remaining patients. 

I got home Sunday and I've been doing as ordered, but I have to tell you that sleeping in my own bed is worth its weight in gold.  Tomorrow is my first of many follow-ups.  Stay tuned, peeps, there's more to come!  

Living My Zebra Life

 So, last week, I had my regular visit with my oncologist and got the results of my CT scan. Life is still stable and that stability is so comforting to me. Soon after that visit, I had a conversation with a friend whose husband is going through his own medical issues.  I remarked that when you get a life changing diagnosis, you get a whole new vocabulary lesson, and people don't always understand your particular vocabulary. The problem is that you are thrown into the lesson without much preparation and are given a short time-line for learning your particular vocabulary. There are two choices: accept the situation with grace or enter into the situation kicking and screaming about the unfairness of it all. 

While speaking with my oncologist, she told me of a lady who has the exact same diagnosis as I do.  She would like for me to speak with her and give her some comfort.  I wrote a letter giving my doctor permission to give my contact information to this lady in the hopes that she will reach out to me.  I just "celebrated" my twentieth anniversary since my diagnosis, so I have twenty years of experience with my situation.  My doctor believes my twenty years of experience could be helpful, so I am waiting and praying for her to reach out to me.  One thing my doctor said was that if she were in the clinic at the same time as me, she'd kind of accidentally on purpose have us run into each other. 😄

This Zebra Broke Out of Her Stable

My health condition has no changes. I'm still stable and I appreciate that every day.  But on July 16, we broke out of our "stable" to take a road trip to Silverton, Colorado.  It was a pleasant trip where we got to meet up with some precious friends we hadn't seen in a while, and we spent three days with Garrett, and Kevin's brother and sister-in-law.  Whisper got to go too.  While it wasn't exactly cool in Silverton, the weather was quite a bit cooler than at home.  

On the way down to Silverton, we had lunch with Garrett's bosses in Ridgway.  The restaurant was good, the setting was better, and the company was fantastic.  It was a lovely time.  

Kevin and I spent one day with his brother and sister-in-law going to Telluride by way of Box Canyon and Ouray.  At Telluride, we rode the gondola up the mountain and explored the village.  There are a lot of shops at that mountain-top village with all kinds of outdoor gear to purchase.  During the summer, people who wish to, ride the gondola up to the top, and then ride their bicycles down the mountain on groomed ski runs.  That's an adventure I am not sure that I would have participated in, even if I were younger. 

On the way back to Silverton, we took the road less traveled and the more direct route over Ophir Pass.  There was a lot of good scenery to see while we bounced around in a four-wheel drive Jeep.  

Box Canyon Waterfall

Garrett brought Sky, a dog who belongs to a friend of his, for the week.  Sky is an Australian Shepherd and for the most part she was well-behaved.  She tolerated Whisper except where food was involved, then all bets were off.  

Sky

On Friday of the week we were there, Garrett took me up to Molas Pass to see where he and Kevin had been taking the dogs for walks. The views were unbelievable.  Sometime during the week, Kevin had lost one of Whisper's leashes.  When we got out of Garrett's truck, there on the bench was Whisper's leash that Kevin had lost.  It came in handy because Garrett needed the leash for Sky for a short bit.  Where we were was a scenic overlook where lots people stopped to look at the beautiful views. 

Molas Lake is in the background of this picture

We stayed in an AirBnB that was completely furnished in antiques, except for the kitchen and bathroom.  Those were pretty modern.  In our room was a wardrobe that looked like it could have led to Narnia, but it didn't.  I checked. 

One chair in the room had a back that came out and broke when I sat in it.  I texted the owner and told him about the chair.  He texted back for me not to worry about it, that it was an old chair.  

Where we stayed was a block from downtown Silverton.  It's a very dog-friendly town.  I didn't do a breed count, but while we were in the area, I saw an Anatolian Shepherd (about the size of a miniature horse and weighed about 160 lbs according to his owner) and an Irish Wolfhound.  Big dogs!  Whisper garnered her share of attention, too.  

While it was great to go and see the friends and family we saw, it was so good to get back home to our own bed.  I wouldn't trade this trip for anything.  The connections and reconnections we made were worth the trip in and of itself.  

Like Clockwork

So Monday, I had two appointments, one to get my shots, and one for my annual squish-o-gram.  If my shots were done in time, I would have the second appointment right away.  If they weren't, I was going to have to wait over an hour  for the squish.  I get to the clinic early, they get me in, and there were no troubles giving me my shots--one needle for each (which is not always the case).  I book my way downstairs and the receptionist hasn't fully checked me in before the radiographer is calling me back.  Fifteen minutes start to finish for that appointment.  Now all I had to do was wait for Kevin to finish running errands to pick me up.  I'd rather be waiting than cause someone to wait for me, so it was all good.  

Tuesday, I just had one appointment, but it was in the opposite direction of Monday's appointments.  Because of road construction, we leave early and get to the clinic with a bit of time to spare.  Again, clockwork precision for this appointment.  There are a few changes coming for me but they are relatively minor.  Adjustment to medication as long as I can tolerate it is about the biggest change.

 EXCEPT, I am going to have to have my knee replaced in the not too far distant future.  That comes with a whole load of baggage to unpack, but I'll wait until that is truly upon me.  For the time being, I am getting the synthetic visco treatments in both knees.  My orthopedic doctor did tell me that I do qualify for handicapped parking, so that will be in the works soon. 

I kind of hate giving these "organ recitals" as update, but there are times that's what's going on with me. So there you have it.  The life and times of a zebra.  I am nothing if not complicated. 

 

Actually, This Zebra Writes

I don't have any real health update.  I will see my orthopedic specialist next week to see if I am a candidate for the cartilage shots in my knees so that I can make a road trip relatively comfortably.  

The road trip, you ask?  We are going to go to Silverton, Colorado, to see Kevin's older brother and our son for a few days.  Along the way there and back, we hope to encounter some friends and maybe an extra relative or two.   

But, back to the title.  Obviously I put this blog together and that requires my writing skills rudimentarily, but what I have been doing with part of my time is writing a Bible Study on my great question outlined in the tenth bullet point on this post.  I collected answers, found a few extra on my own, and set about putting together a cohesive study on this topic.  It's finished.  Because I have used illustrations that I do not own the copyrights, I am not submitting it for publication, nor am I seeking to profit from the sale of the study.  I will make it available for the cost of supplies and postage, if you use the contact form below to give me your snail 🐌 mail address, I will then reply as to the total cost.  I must say it was interesting to put it all together.  I learned so much through the process, I am thinking I am going to try again!

 

Short Update

I saw the oncologist on Monday.  I had had my yearly CT scan the week before and from the way things appeared on the scan, my tumors are stable if not a wee bit smaller.  There was no new degeneration and overall no significant changes.  Blood tests were largely normal, just a few places where I am a bit too high or too low, but that has been my norm for a while.  

This October makes twenty years since the tumors were first found and diagnosed.  It's been a very interesting journey through all the ups and downs, but as long as things have remained stable, I find there is much to be said for stability.  And there are many things to be thankful for--especially that I have good health insurance.  I did the math and figured out that my monthly treatments rack up to $1,000,000 every three years and four months.  I told my nurses that and they didn't realize.  This does not count the cost of oral medications, scans, office visits, bloodwork, etc.  

In other news, Whisper is settling in nicely.  She is fine with me at home until about 2:00 pm, then if Kevin is not home, she whines.  She is definitely his girl.  I asked her last night if she liked living here and she smiled.  One night after Kevin had gone to bed, she was whining (she does this a lot) beside my chair so I was petting her.  I looked over at her and she gave me an expression that told me she was having me on.  I was trying to get her to perk her ears up one night and asked her to show me her ears.  She turned her head sideways so I could see them.  She's learning to play with toys, which at eight years old isn't too bad.  She's a very social dog and seems to only bark at cats.  She's our goofy girl!

 

My Attitude Counts

This is a quote from a book I read where the protagonist was diagnosed with breast cancer.  This is a quote I felt strongly enough about that I wrote it down.

I can focus on my illness and stay depressed.  Or I can focus on God's goodness and know that I'll have an eternity to enjoy with Him.      

                                Kim Cash Tate 

 

Hello, Good Bye, Hello Again

 In the last few months, I've had no major or even minor health changes.  My status is quo, I'm as normal as I'll ever be, finishing out nineteen years since diagnosis.  

We did our traditional Thanksgiving of a plethora of Mexican food--carne adovada, green chile chicken enchiladas, green chile stew, two kinds of rice, a pot of beans, and the usual accoutrements. (I just saw my dentist and hygienist.  She asked if we did our usual Thanksgiving and I told her that we did.  She said she has an in-law from Peru who would be down with our kind of Thanksgiving feast.  It's the joys of being married to a Texican.)

Monday of Thanksgiving week, we went to the animal shelter and adopted Maggie.  She was a three year old pit bull terrier mix who had a sweet personality with us.  We had her for five days when a service technician rang our door bell and she aggressively attacked him, biting him in the abdomen, and breaking his skin. 

This could have been a very different situation if a child had been involved, and we felt we couldn't keep her, so we returned her to the animal shelter.  We really didn't want to do that, but our hands were tied by the adoption agreement we signed.  I did email the director asking that she be put in a nearby program where inmates train dogs and give them a second chance.  I hope that is what happened with her.  

I was perusing another humane society website and found this adorable 70 pound bag of fluff named Whisper.  She's part Australian Shepherd, part German Shepherd.  Her biggest German Shepherd trait is her shedding.  We can sweep up an extra puppy's worth of fur almost on the daily.  

We had a snow last week that dumped about eight inches on us, and while Kevin was shoveling, Whisper decided she had to be outside by his side.  At one point, Kevin came in the house telling me that I needed to get a picture of her.  She had gone into the garage, grabbed and apple from one of our bins, and taken it outside to have a snack.  She is very food motivated.  

She does love to play--keep away, primarily, but she will chase her toy if you throw it for her.  She will often come and drop her toy at my feet as a clue she wants to play.  

Her bark is ear-piercingly high pitched for a dog so big and you know when she barks, she wants something.  Most of the time, she's pretty quiet unless she is not allowed to go where you go, then the puppy-dog eyes and pitiful whine come out.  

When we adopted her, the humane society asked if we were keeping her name and since she's eight years old, we didn't see a reason to change it, and besides that, she has a beautiful name!  This week we got her registered at the Vet's office and licensed with City Hall. We are waiting on her name tag to come in to put on her collar.  The style of tag we chose is the Washington State Driver's license.  

We are still learning who she is, as she is learning who we are, but we love her just the same.  We still are missing Abby.  We hurt over the events with Maggie.  But we believe that Whisper is a great fit for us.  

 

How Do You Say Good-Bye?

On May 11, 2017, I dispatched Kevin to the southern terminus of the Pacific Crest Trail, and that night my power went out at my house.  While waiting for the power to come back on, I could hear the utility workers in my back yard.  Understand that I have no overhead power lines near my house, nor do I live on the corner.  There was no reason for these men to be in my back yard.  The next time I talked to Kevin I told him what happened, how it made me feel, and that I was going to get a dog.  

On May 15, 2017, I went with a friend to the local animal shelter to look at the dogs.  The next day,  I went back with another friend and Abby found me.  Kim said Abby watched me with a hunger in her eyes to please me in anything she did.  I filled out the paperwork, paid the fee, and brought her home.  Well, first I went to the pet store and picked up some necessary items, like dog food, water bowl, Greenies, and a few other things to make life for Abby more comfortable.  She loved riding in the car, she loved being with me regardless of where I was, she loved going for walks, she just flat out loved me.  

Abby had a few tells to let me know she was happy--rolling in the grass, jumping up and down, or just running around, and last but not least, her tail curled over her back.  You could ask her if she wanted to go with you, and she'd jump up--never putting her paws on you, just jumping, tucking her front paws close to her body.  Once you let her out of the house, she'd run straight to the car, ready to jump in.  

Her manners were impeccable.  She had a gentle mouth when taking treats from your hand, she would jump but never put her paws on anything, and she never got on the furniture at our house.  If she saw another dog get on furniture at someone else's house, then she was okay with getting on the furniture, but only on a limited basis.  

She was quite the alpha, but in a rather quiet way.  When I first got Abby, Kim had a dog that was about six inches taller and maybe 20-25 lbs heavier.  Abby would quietly growl Kim's dog off her bed and take it away from her.  She was also a herding dog and would herd me toward whatever she wanted--the pantry where her treats were, the door to go outside, or to even go for a walk.  Once I had a friend come over with her children, Abby barked at the children for the whole hour they visited, then when it was time for them to go, she herded the children into the car.  When one of the children tried to get out, she wouldn't let that child out.  She was pretty funny at times. 

Kevin was on the Pacific Crest Trail when Abby first came to live with us.  He came home for a short while when the trail became impassible. Before I went to the air port, I got some plain hamburgers for Kevin to feed Abby as a way of introduction.  Closer to home, Kevin decided to get a sandwich at Arby's.  He took a piece of bacon off his sandwich and fed that to Abby.  During the week that he was home he often fed Abby food from his plate.  On his way back to the trail, Kevin said, "We've got to stop feeding Abby our food."  Abby became a first class groaker.  Any time we were eating chips or crackers, she was right there to share.  

Over time, Kevin became disgruntled with the food Abby was eating and decided she needed "real" food, so he began cooking for her, ground beef and rice, ground turkey and rice, ground chicken, mashed potatoes, and the easiest to fix for her was tuna, yogurt, or cottage cheese.  She never liked kibble for the first few years we had her.  No matter what kind I tried, she just wouldn't eat it.  She wanted canned food, so that's what she got.  A couple of months ago, I was helping a friend unpack her boxes in her new house and we found some old kibble and Abby ate it right up.  So for a couple of months she ate kibble happily, along with her other regular foods.  

Abby loved going. . . going on walks, going in the car, going wherever I was going, it didn't matter.  She would go with Kevin on his training hikes on Beezley Hill.  She'd run ahead of him and then come back or she'd follow him.  But one memorable time, Kevin came home without her and told me he lost her.  We both went back up to the Hill to find her, I was at the south end and Kevin was at the north end. She finally came out of one of the trails with the hugest smile on her face.  She was having the time of her life.  It wasn't Abby sleeping in the doghouse that night, it was Kevin for letting her get lost! 😂

Abby defined play on her own terms.  Fetch wasn't her best game, though you could throw a ball and she'd chase it.  She'd just not return it to you.  She might drop it in your general vicinity, or she'd take it somewhere else entirely. When we had treats in our pockets, she would do anything we asked of her, sit, stand, lie down.  She never got the concept of "stay," though.  She wanted to be right beside us always.  To her these things were the play she liked best.  

 

She loved to be petted and tolerated being brushed.  Scritching behind her ears or at the base of her tail made her so happy, but belly rubs and chest rubs were her thing.  Even until the day she left us getting chest rubs and belly rubs made her feel happy and loved. 

She was ten years old when we got her, She had had a hard life before she came to live with us.  She had lived in the basement of a house with a man with dementia.  When he died, her owner, the man's daughter, moved to a smaller house and couldn't keep Abby.  She was given to a neighbor who mistreated her, then gave her to someone else who already had a dog.  Because of physical limitations, the woman who received Abby had to surrender her to the animal shelter, where she found us a week later.  All the time we had Abby, she didn't trust men very quickly, and particularly didn't trust men with facial hair.  Only in the last few months that we had her did she not react to men with facial hair (except for the lawn mower guy who had a very long beard).  

The paperwork we got from the animal shelter said she was Belgian Malinois and Labrador Retriever mixed.  She did do a bit of herding, but not much, however, she HATED the water.  If she had to have a bath, she would resist, kicking and digging in her heels the whole way.  Then she'd be disgruntled with us for at least an hour afterwards.  We did do a doggie DNA test on her, and she tested to be Siberian Husky, Labrador Retriever, and Shiba Inu.  Basically, she was a mutt.  

If I ever left the house without her, she would let me know in no uncertain terms that kind of behavior was NOT acceptable.  She would mope and pout, even though leaving her behind for a couple of hours was the best thing for her, especially if it were too hot outside. She didn't care, she wanted to be with me.  

One of Abby's favorite treats was a Milk Bone dog biscuit covered in peanut butter, which was followed by a Greenie dental chew.  Then we found out she liked Goldfish crackers, but too many of those upset her stomach.  Learned that one the hard way.  

One thing Abby learned was where all the dogs lived in the neighborhood--Larry, Jake, Opie, Gemma, Buddy, and Blue--and who had treats for her.  Because I carried treats with me on our walks, all the other dogs knew they'd get a treat when they encountered Abby.  Make no mistake, Abby let them all know who was boss.

In her desire to be where we were, we'd take her with us and then open the door to the car and connect her leash so she could get air and stay comfortable without running away.  A couple of memorable times, she got loose and sat by the door of the business where we were until we came out.  One time, it was at church and the usher who was counting attendance wrote down how many people were in the sanctuary, the nursery, and one dog by the door. She made an impression. 

Abby didn't mind fireworks, but she desperately despised thunderstorms.  Soon after I got her, I came down with a stomach bug and we were having a dilly of a thunderbumper,  I was in bed, and while she didn't try to get on the bed, she was as close to me as she could possibly get, and she burrowed under the covers that had eased off the bed.  She stayed there for the duration.  Only her tail was visible. As she got older and her hearing waned, she didn't mind them quite as much.  I don't think it was the noise as much as it was the air pressure vibrations that bothered her. 

She LOVED LOVED LOVED snow.  Being a double-coated dog, colder temps were her heaven.  She would rather sleep on the bare floor than on her cushy beds.  But, oh my goodness, when it snowed, she was Queen of the Mountain on our snow drifts.   Snow was her happy place!

Lately when Abby wanted my attention, she'd use her snoot to bump my arm.  Usually that meant she wanted to go outside, unless she wanted a dog biscuit or her green chew instead.  She could be relentless in gaining your attention.  

She liked to crawl under Kevin's legs, especially if he had them propped up on something while he was sitting on the sofa.  One time Kevin had his ball cap on his knee.  Abby knocked it off and looked so proud of herself.  

About two years ago, Abby started limping and wasn't her usual graceful self.  We stopped taking her for walks, thinking it was a sprain or something that needed rest.  She became depressed, so we took her to the vet to find out he didn't really know what was going on with her, but he guessed she might have a degenerative spinal condition.  He said to do what makes her happy, she didn't seem to be in pain.  As time went on, she became more clumsy and more content to lie down and rest.  One of  the things we started noticing is that her tail drooped as if it were too heavy for her to carry it.  Where once we could scritch just above her tail and make her so happy, it was as if she didn't feel it anymore.  

Her last day started out normally--she took Kevin for an early morning walk, and visited the next door neighbor, begged treats from me, ate a full bowl of cooked ground beef, a couple of Milk Bones, and was generally having a good day.  I let her out to go potty or wander around and found her at the base of the two steps leading into the patio door, unable to stand on her own.  I got her up and in the house, but soon she needed to go back outside but collapsed again.  When we got her in the house, she couldn't move past the kitchen.  We tried to make her as comfortable as possible.  She lay there for about two hours all told, sad, frustrated, and just not herself.  About 4:00, she had a seizure and then started crying.  Kevin was working outside raking up weeds.  I hurried to get him to take Abby to the vet.  We got her loaded up in the van on her "car bed" pillow and before we reached the highway she was gone.  The last thing she did was one of her most favorite things to do--ride in the car with us.  

How do you say good bye to someone who has been part of your life daily for five and a half years? It's been a month now and I miss her presence in the house, the jangle of the tags on her collar, her staring at me when she thought I'd stayed in bed late enough, her snoot nudges, and even her silent but deadly farts. 

The Peaceful Zebra

 

A funny for the day.  I woke up this morning to find the clock reading 12:57 for the time.  I thought I had really slept long and hard when all that had happened was that there was a power blip.  It was only 8:57.  Blessed are those who can laugh at themselves, for they shall never cease to be amused. 

Yesterday was my day to go get my shots.  It was an ordinary day with a dog who wanted to go along with us and sit in the car, except for the times when I was shopping and Kevin didn't want to go in the stores (not surprising, except for grocery stores he doesn't like shopping).  Kevin and Abby would walk around the parking lots while I am otherwise occupied. 

When I get my shots, I have to wait until I get to the clinic for them to release the medication and get it to room temperature from the refrigerator where it is kept. My regular nurse is on maternity leave, so I had stand in nurses giving me my injections.  I was in the infusion section waiting for my medication to warm up when my doctor walks by and asks how I am.  I answered, "I'm peaceful."  She replied, "I need you to come and tell me that every day/"  

One of the things that happens with my medication is that it can clog up in the needle and set up like cement. When that happens, a new needle is required.  I will ask my nurses if they have extra needles in their pockets--better to have extra needles and not need them than to need them and not have them.  In spite of that, yesterday was a new adventure in needles,  The nurse had some extra needles in her pocket, but alas, she didn't have enough.  Two nurses ended up using three needles each for a total of six pokes in my derriere.  On my way out, I tell my doctor and  she said that we may have to change to a different format of the drug just to circumvent my overuse of the needles.  I think I overshot my quota, no pun intended. 

What I Do With My Time

A friend of mine used to be highly involved in Relay for Life and would collect things that could be auctioned to raise money for cancer research.  That's when I made my first Chemo Survival Kit.  I am not treated with chemo infusions, but I have a rudimentary understanding of what that entails.  With a little research, I found some things that would be a comfort to someone going through chemo, so I put them into that kit.  

Fast forward a few years, and I started making kits and taking them to my oncologist appointments. So, you ask, how many kits did I make?  Two a month.  Unfortunately that is not even a drop in the bucket for the number of new chemo patients every month in my clinic.  I asked the doctor how many new chemo the clinic gets in a usual month.  The clinic serves five counties with satellite offices in three counties.  In a month there are 100-120 new chemo cases diagnosed depending on when screenings happen.  That's 1200-1500 new cases in a year.  In the few years I have been doing this, I average two kits a month, and sometimes I do extra when a friend finds out about someone they know who has cancer.  

What's in a kit, you ask? 

Included in any kit are:

• An afghan—either crocheted or made from polar fleece.  
• A hat
• Peppermints to aid in quelling the nausea
• A book to read while receiving treatments
• Plastic flatware—to keep from increasing the metallic taste chemo provides
• A satin pillowcase—feels better on heads that are losing hair
• A notebook and a pen for journaling, doodling, making lists, keeping up with all your cards and gifts
• A nifty tote bag to keep it all together and to take with you to your treatments

I include this list with a note that explains my own cancer journey and that every stitch on any item is a prayer for their healing and recovery.  This is not a cheap endeavor but I try to make it as economical as I can.  I buy the best quality yarn for the best price I can get.  I get heavy fabric remnants for the tote bags (usually those are 50% off, so there is a good cost savings).  I buy the books at the thrift store.  The plastic flatware comes pre-wrapped from when we get take-out.  I buy the satin on sale as much as I can, sometimes I can find that in the remnants as well.  Sometimes I will see tote bags or overnight bags at the thrift store that are cost-effective.  I get joy from doing this and because I am a patient, I am anonymous.  It gives me smiles to think I might have given someone else a smile in a tough time.  

So I spend my spare time crocheting, praying, and sewing the kits.  

 

It's Time to Put Off Decisions

 Just for starters, I love my gastro-enterologist.  He responds to my questions with phone calls, and then explains them in easy to understand terms.  But before he calls me, he reviews my case and what's been going on with the other doctors.  So for all my zebra friends, I wish you all to have such a doctor.  

So here's what's up:  it's not feasible right now to have a TIPS procedure,  I am borderline enough to qualify for the procedure, but medications and paracentesis will control the situation with my ascites for now.  When it gets to the point where I need paracentesis at least once a week, then TIPS will make more sense.  How do I feel about this? I am content to wait because I want what's best.  

In other news, the Carcinoid Cancer Foundation's newsletter announced that the monthly injections I get will soon be available in tablet form that I will be able to take daily.  The drug, an octreotide (generic name), Mycappsa has been granted orphan status by the Food and Drug Administration, which will make it available more quickly.  It was developed in Ireland (Go, Ireland!) and is finding its way to the US.  What this means for me personally is that I will be able to give up the 19-gauge needles in my backside every month (an insulin needle is 31-29 gauge--the smaller the number, the bigger the needle). 

It seems that life is three steps forward and two steps back, but that's true for nearly everyone I know.  I am content with that.  

Relying on Wisdom

In April and May, I had tests done to see if the ascites were perhaps caused by portal vein hypertension.  I had an appointment scheduled for late June to get the results of the tests and to see what could be done next.  The portal vein hypertension readings would either put me in line for a TIPS procedure or relegate me to continued paracentesis.  Before I could go in for the appointment in June, I got a call saying that the doctors had no answers yet, could I come in July 28th.  So, two months after my last test, I finally get some information, not necessarily the answers, but more to go on.  

Dr. V. explained that there were several factors to consider before deciding to go in for a TIPS or not.  

• MELD score--mine is 15, which is below the cut off of 18.  The MELD score stands for Model for End-stage Liver Disease.  This is also the score that puts a person in line for a liver transplant or not
• Portal Vein Hypertension--yes, I am on the borderline, but enough over to consider that it is a factor in my ascites.  
• Varices in my stomach--varices are also called varicose veins.  The TIPS could alleviate the pressure on the varices and allow them to go back to normal.   
• My interesting architecture.  We are all fearfully and wonderfully made, with intricate parts fitting together in unfathomable ways.  I am just have a more interesting and challenging architecture for how I was put together.  I'm nothing if not complicated. 

While I was waiting for these results, I did not just sit and twiddle my thumbs.  No. no, no, . . . Kevin and I went to Eugene, Oregon, to see the World Track and Field Championships with our daughter and her boyfriend.  My immune system is fragile enough that I didn't want to be in such a crowd, so I stayed at our Airbnb and did the cooking while the rest were enjoying the competitions.  They got to see world class athletes doing what they do best, and then Kevin and I got to see some friends we hadn't seen for a while and catch up on their lives. That filled most of a week's time for us.  

So here is where I am now.  I need wisdom to determine the right choice on the TIPS option, and this is where my faith needs to stand strong.  TIPS will require a one-night hospital stay. I have sought advice from my oncologist, and I need to ask a couple of questions from my gastroenterologist before making a final decision, but I need to make the right decision.  So that's where things stand today.  I need wisdom.