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!