Lesson from a transplant

Hi Guys!
Well first off I had yet another doctors appointment this past week.  I met with both the transplant docs and my cancer doc.  Both reports were pretty good.  It's funny because I have had such a change in how I view doctors appointments.  I used to dread going to the doctor, pretty much every doctors appointment meant another hospital stay.  Now I almost like going.  Don't get me wrong it's not that I enjoy spending hours siting in waiting rooms and wasting two days at the airport just to have a doctor look at me for five minutes, but going to the doctor has become an enjoyable experience.  It is a chance for me to see how much I have improved and to show the doctors how good I'm doing!  This visit in particular was met with raving reviews from my cancer doc and his student.  Much to my grandmother's delight, who was with us this trip, he called me the poster child for PTLD!  I also got to see my beautiful X-ray.  I unfortunately did not get a copy of it but let me just tell you it was so big and black!  Those lungs have really expanded and cleared out!  I have a couple more appointments to go before my doc month is over (I see all my docs every 3 months and they all seem to occur at the same time), this time these are here so much less time consuming!  After that I'm a free woman until September!

Few!  With that update out of the way we can get on to bigger and better things.  The real reason for this bolg.  Transplant is a very intense process and it is impossible for a person to go through it without having their life completely change and not just in the obvious ways.  Yes I have a huge scare across my chest and a few more along my neck and stomach but those are a small change in comparison to how it has change me as a person.  In fact their are so many changes that I am going to spare you the novel post and break it up into smaller chunks!  Thats right I'm back on the blog wagon!  Lets buckle up (are there seatbelts in wagons?  Maybe these days!) hold on and dive into our journey of LESSONS FROM A TRANSPLANT:


Lesson 1: Patience
How to Wait

I am no expert in this field, in fact I still kind of suck at waiting for some things.  However I have had a LOT of experience waiting for big things to happen.  Besides the obvious, waiting on the list for lungs, I have spent time waiting to get listed, waiting to go home, waiting to go back to school, waiting to feel better, waiting, waiting and more waiting.  I have spent the good part of the past two years simply waiting.

What I have learned is that waiting just happens.  It's one of the hardest and easiest things to do.  Like time the wait will pass whether you pay attention to it or not and that is the key, to not pay attention to it.  As anyone who has spent time in a waiting room, on a plane or on a car ride knows, the time passes faster when you have something to do, ideally something interesting or fun.  As a person who has spent long periods waiting (were talking months here)  I know that life doesn't stop when you wait and the time waiting is still time.  You can sit around miserable waiting for the time to pass or find something to do.

Definitely the hardest wait for me was the seemingly endless 19 days I waited on the list.  Now I know that sounds super short, and it was, but keep in mind I had already been waiting for about a month after we moved just to get listed.  I was not the greatest at this wait especially at first.  When the call came in that I was on the list I half expected to get lungs that night.  I even shoveled in my food (and by shovel I mean maybe eat at a barely normal speed, I was pre- transplant people I couldn't eat fast remember this X-Ray!  My esophagus was way over on my right there was no eating fast for this girl!), thinking I wouldn't have time to finish before the call came.  Well I did, as hours turned into days I realized the call wasn't coming anytime soon.  As I waited I began my first intense steps down the path for the waiting lesson.  These steps showed me to find something else to do.  I spent my days at rehab, napping, seeing friends and of course at our pitty dinners!  Pretty soon this chunk of the path was over and the next chunk began.

This is a path we all travel all life long but for the next two years my path would change from a fairly flat easy road to a steep mountain pass, covered in a jungle making it impossible to see the end.
As I climbed along I learned some tips along the way.

Another way I have learned to be content with waiting it to change the moment from being one you want to pass to one you want to remember and even possibly enjoy.  As I am currently waiting for my hair to grow back this lesson has been very clear.  My hair is super short and curly and although this is not a style I would have ever chosen on my own I am learning to enjoy it.  There are perks to short hair, its easy to deal with and never gets in the way.  I do have my moments when I really just want to pull it up in a ponytail or braid it but I have to remember that one day it will be long again and this period of short hair will be gone.

I still have a long way to go on this path, as I still struggle to wait for school to start, to be done with school and start my "adult" life, a relationship, my hair, but I have also come a long way!   

Kaelyn and I waiting for our appointments last week

Moving On

So Im sad to tell you that its been so long since I last posted that I actually forgot how to write a new blog post!  (I'll blame it on the chemo brain, how long does that last by the way?)  But as I mentioned before I am living a healthy productive, rich life and for that I am not sorry!  I am continuing to make progress.  A few weeks ago I got my G-tube out.  It is a little bitter sweet, my tube was the last remnant of my old life that still remained, well except for my crappy stomach, but we have already covered that one. see here  Anyway, it hasn't been too rough having it out.  I had thought I would need surgery to get the hole closed but the doc thought it would close on its own.  I decided to give it a go and see if I can save myself a surgery.  So far it is closed for the most part (Hallelujah praise the lord!)  it leeks from time to time but most of the time its nice and dry!

As I lose my old life physically the last dried shriveled up remnants are falling off mentally.  My job has been a great help to shake off the last part of my anxiety!  (shake it off, shake it off Oh Oh... there is some real truth to that song yo!)  I am also beginning to get used to this whole idea of being active.  Today for instance I went on a walk through the Mecca of all dog parks and I enjoyed every minute of it!  The old me would have been miserable and constantly calculating where the next place to rest is and the fastest way back to the car.  But I wasn't I barely even felt like I was doing any work at all, and lets be honest walking isn't exactly strenuous exercise!  At Easter I got a lot of my family to play kick ball and I had a blast.  Running from base to base was no problem.  I almost would go as far as to say I love moving!  Not like formal excise but I do love doing active things!  The old pathway of my brain have grown over and I no longer despise excise and with that its time to step, maybe even run into the new improved and probably more true to who I am, me!

Yes still around!

Hello people of the Internet,

Yes I still exsit!  I'm doing well and for the first time in my life able to just live dare I say it.... Normally.  My strength (what little I had) is coming back, along with my hair and my weight.  In fact I have gained back like 10lbs with no tube feeds!  That's right this girl eats now, albeit not healthily but "real food" has got to be better than the fake chemical crap (or do McDonald's fries still count as chemical crap???)  for those of you lucky enough to see me in person you'll know that I'm sporting a very curly do!  It's been kind of fun trying out the short look but it's starting to reach the crazy faze which I'm not looking forward too!  Oh well I'll get through it one inch (probably more like one millimeter) at a time!  My normalness countinues as I now have a job!  I'm working at a local coffee shop and I love it!  I always thought I would like being a barista and I sure do!  (P.s. I'm now Anna Battista the Barista!). Basically I'm so normal you would never know even a hint of what I've been through unless I told you, oh and I have a dog with me a lot of the time, I guess she is kind of a giveaway.  

        So now dear readers it is time to have a talk.  In relationships this is often referred to as a DTR (define the relationship) and although we have an odd written relationship where you know all about me and I'm not even sure who is reading this it is still the term I will use.

As I stated above things are very normal with me and, as I feel, hearing about my normal life is slightly boring, I am going to start blogging less frequently (and let's

be honest here I've been doing that already lately) If you need more frequent updates from me feel free to contact me in one of the other various ways. (Comment here, facebook, email, somke signals,  yea I think smoke signals would be the best!)

Peace out lovelies catch you when my life changes (let's hope for the better!) or when I think of something good to share.

Hello Again!

I'm back.  I can't believe it has been a month since I last posted.  EEK!!!  I really need to get better at posting.  I mostly put it off because I don't know what to write, so if you have an idea for me, comment below!

Anyway, things are going pretty well for me.  I got a job, my first ever!!!  It is going well.  I am working at a coffee shop, which is good, but a little overwhelming at times.  I am also taking a class this semester, my first time back in 2 years!  I have discovered that my chemo brain seems to be long lasting as I am having the hardest time remembering things at work and school.  I used to be so good at remembering things and now, well.....who am I?  Hopefully this improves as time goes on, but if not, well, I guess I'll just have to figure it out.

Pepper is doing well, though she is going through her terrible 2s faze.  She is being such a stinker lately.  I'll give her a command and she just looks at me like, nope I don't have to do that.

Currently I am sitting at Peet's coffee in Phoenix on the GCU campus!!!! (yes Dad they have Peet's here!) Before you get too excited, Nope I'm not back at school, well I am but not as a student.  I am here visiting Jenna!!!!!!!!!  It has been so fun and super good to see her.  I haven't seen her in like 9 months!!!!  She could have had a baby and I wouldn't have even known about it!  (No she didn't have a baby)  Its been so nice, its almost like I never left, well except that everything is different...and I can walk...but.... yeah, just the same!

Welp, good talk!  Keep on Keepin on!  I'll try to post more!  Ok bye now!

Tangled Adventures!

Hi blogollowers!
Its been awhile since my last post.  Sorry about that.
I have decided to stay home from school again this semester.  Don't worry my health is good still!  I made this decision because of my service dog, Pepper.  She needs more training to help her be the best she can be and I felt that staying home would be the best decision for her.  This way I am able to give her more attention through this training phase then I would at school with my busy schedule.  I plan to return in the fall, though given all the turns my path has been taking who knows if this will really happen!  

While I am home I am hoping to finally get a job!  While I wait (and probably even while I am working)  I have started an Etsy shop!  I have been wanting to do this for quite sometime.  As many of you may know I am a huge crafter.  I guess when you have spent most of your life sick and unable to do active things, you develop more sedentary hobbies.  For me this was crafting.  I can knit, crochet (yes they are different), bead and sew and all of these crafts will make an appearance in my shop.  My shop is a way for me to earn a little money and have something to do with all my projects, without getting on the hoarders show! Stop by and check out what I have for sale, also tell your friends!
  
Check out my shop here or by going to https://www.etsy.com/shop/tangledadventureshop 

New Year at last!

As the new year approaches I am planning on making a few big changes!  I'm finally getting back to school!  Pepper and I will be ditching this chilly snow filled land for a more cactusy landscape!  

Things with her are going great.  She has begun to alert me!  Although she doesn't know the nudge signal attached to the alert yet,she gets my attention and promptly picks the correct hand.  So far she has done 3 alerts and all were correct!  Last night she even warned of an impending low early enough that I never had symptoms!  It's a good thing she's alerting too because, ironically, she chewed up the cord to my monitor(dex) and I haven't gotten a replacement yet.  I guess that was her way of telling me she is up for the task!  

I am very excited about this next year!  Let's hope it's a little less medicalie, and much more friendie and fun!

Until next time

Ttfn blogollowers!

Pepper!

As promised here is the story about what I have been up to lately!

This all started last January when I came across a site that advertised diabetic alert dogs.  I am thinking I was doing some sort of search on service dogs but I can't really remember.  Anyway, I knew that this would be a perfect thing for me.  I really love dogs and have been wanting on for, well... forever, and my diabetes has gotten very dangerous since my transplant.  Dangerous because as I have mentioned in previous posts (see here)  I don't notice when I get low until I am super low, which could lead to me passing out.  If no one is around when this happens I could die because I don't get sugar to my body soon enough.  At the time I did't know about continuous glucose monitors.  The dog seemed like the best solution.  Unfortunately these dogs can run many many thousands of dollars, in fact a low priced dog is around 20,000.  YIKES!!!!  After learning the cost I moved on realizing that this life saving pal was beyond my reach.

Enter October:
I began searching again for a Diabetic Alert Dog (DAD).  This time I came across some information about how you can train your own, which greatly reduces the cost!!!!  What this meant for me: I could actually afford one!  Although I had gotten my CGM (check my blood sugar and warns me when it is going low)  I was finding I still had lows that went unnoticed for a long time.  My alarm might go off, but I would either sleep through it or not hear it.  It was then that I realized that a dog would help me live independently which is what I have been wanting to do.  I began looking for a dog to begin training and came across my little Pepper!

She was the last dog left from a litter of Aussiedoodles (australian shepherd poodle mix) and best of all she was being tested for her service dog (specifically a DAD) potential.  How perfect!  One thing lead to another.  The papers were signed and Pepper became mine!

I picked her up the day after learning my fate.  She is awesome!  Very well behaved and learns quickly.  She is super sweet and loves to snuggle.  I am enjoying the training and am so glad that a service dog was a possibility for me!

What is a DAD?

A diabetic alert dog is a dog that can smell the changes in blood sugar a person goes through.  They are trained to give an alert to the handler when their (the person's) blood sugar either rises too high or drops too low.  These dogs can also be trained to do additional tasks ranging from getting juice for a low to alerting others of the danger.  What is awesome about these dogs is that they often pick up on the blood sugar change 15 minutes or more before it is picked up on the monitor.  This allows the person to deal with their blood sugar and fix it before it becomes a problem.  In my case Pepper will be able to alert me to a low, much earlier than I would feel it, preventing my sugar level from getting low enough to be dangerous!