Devastation

Imagine being told that you can't go on your last family vacation right before you were about to leave.

This is how my weekend started out.

In July, my sister and I found out about our upcoming family trip to Maui, Hawaii in February 2019.  I knew that the trip was booked into the end of the midterm week but I remained hopeful, thinking that there's no way my midterms will be on the last two or three days of the week.  With that sliver of hope, I knew that there was also a great possibility that I could have midterms and that if I do, I might not be able to go on my trip.  I tried to remain optimistic but I didn't allow myself to get excited.

I was driving somewhere with my boyfriend and his family when my class information came out.  With that, I knew that my exam schedule was somewhere hidden within the multiple pages of information about the course.

English - February 15th
Psychology - February 15th

I hadn't found out my other two at that point but I was in a panic.  We were to fly out on February 13th.  My nightmare came true.  I was at a loss of what to do because as most of you know, university professors are not very understanding, especially of vacations.  Most times, it is stated in the syllabus that a trip is not a valid reason to miss exams.  I had to think fast, weighing my options.

Should I email my professors now that I know? Will they be more understanding because I found out this early on?  Will they tell me to suck it up?  Will they let me write a supplemental exam at an alternative date?

My mom happens to be close friends with one of the college professors that taught a different class.  I figured that she would be a good resource to give us some direction about this tricky situation.  Basically, she told us that considering it's the midterm week and not finals, they would be more understanding.  She also added that I should explain that this trip has been planned far in advance and that I am genuinely worried about my outcome and explain that I want to achieve in my classes.  I wrote up my emails and fortunately, both of my profs were understanding and told me that I could write a supplementary exam before I left on my trip.

Once I got back to school, I realized that I had more online options for classes as my options were limited at the college.  I decided to drop English and enrol in Geology.  At this point, I was in two classes that I had to attend and two online classes.  I didn't realize how much reading I was in for but I was up for the challenge.  On the bright side, neither of my online classes have midterms.  In the end, my psychology midterm got moved to March meaning that my classes were no longer a barrier.

The days felt like they were drawn out and slow moving.  Our trip felt like it was forever away.  I finally started to get excited last week when I attended my last Sociology class before I was to fly out.  I had arranged for notes to be taken and I had already finished all of my quizlets for each of my classes.  I finished packing my suitcase for the trip and packed another suitcase for my trip to my boyfriend's house on the weekend.  I remember being panicked because I didn't have enough clothes. I texted Carson asking if I could wash some clothes at his house so I could throw them in my other suitcase as soon as we got home and of course, he agreed with no hesitation.  I had lists left, right, and centre about what needed to be done and packed.  I was ready.

Friday morning I attended my last class.  My biggest worry at the time was convincing my dad to let me stay with my boyfriend until Monday morning instead of Sunday night.  I was upset because I hadn't seen Carson in over a month and he was busy with his last weekend of choir.  I had planned to drive out Friday after my class, spend the night at his house, and go into the city with his parents to watch the final performance.  Little did I know, my life was going to spin out of control.

I had been monitoring my platelets quite closely for the last year.  As a routine check, I went to get my counts after the Christmas break.  I got a call from my doctor saying that I am at a critically low level of neutrophils.  The normal range is 1.5-8.0.  I was at 0.7.  I was basically told to not get sick and to go for bloodwork the next week.  I was still at 0.7.  During this time, I had been in a text conversation with Dr. Pearson who didn't seem too concerned, even if I dropped lower.  He told me that he was headed to Hawaii on Friday before we left.  I knew he was a good doctor, but who flies to the same country as their patient when she's in a crisis? I'm just kidding.  He was going there anyway but it was kind of ironic and weirdly enough, it provided me with a sense of relief.

Friday rolled around, I went to class, went to the hospital to have lunch with mom and her nursing student, Mallory.  I was grouchy because dad and I were fighting about when I needed to be home.  After eating and ranting to mom, I headed down to the lab and got my bloodwork done.  I asked if they could tell me my neutrophil counts but they responded with, "sorry, we don't give out results".  This took me by surprise because I had been there for the past two weeks and received my results no problem.  They sent me to the front to sign a paper and pay a fee to find out my results.  I figured that I didn't have much of a choice because Dr. Pearson was out of the country and wasn't able to let me know.

A lady came out with forms for me to sign but proceeded to tell me that if my doctor adds anything to my lab requisition I won't be able to get the results.  She was strongly discouraging me and I was trying to explain that I've been dealing with ITP for quite a few years with no change in my lab req but she was persistent.  I figured that she thought that I was just a young person that didn't know what I was getting myself into.

I thought to myself, "Don't you think that if a young person knows what a damn neutrophil and platelet are she should be able to sign a consent form to get her results?"

I ended up just giving up on that conversation and my mom assured me that she would call the clinic and find out my results.  I didn't need to wait for that conversation to happen.

I was on the road when my phone rang over the Bluetooth in my vehicle.  It was my doctor.  He told me that my platelets were at 152 and that my neutrophils are at 0.2.  He was very concerned and said that he would be in contact with my hematologist.  I told him that Dr. Pearson was out of the country so he would have to get ahold of a different person, which he did.  I had also told him about our upcoming trip, hoping that these counts would not affect our plans.  He said he was going to call me back as soon as he knew anything.

I had a bit of a meltdown and a moment of self-pity.

"Why me?"
"Why can't everything just be normal for once?"
"Why are my platelets good and now something else is crashing?"

I pulled myself together when he called me back saying that he has good and bad news.  The conversation was a blur.  The words I remember were,

"Dr. Brose and I both agree that you are not stable enough to go on your family vacation."  

If I caught anything before I went, during my travels, or while I was in Hawaii, I would need to seek immediate medical care which could amount to hundreds of thousands of dollars in a minimal amount of time.  It was not worth the risk.

He proceeded to tell me that I needed to avoid all contact with anything that could get me sick and that if I got a fever, I needed to get to the emergency room immediately.  Of course, knowing that information I took it seriously but I ask a lot of questions to gather information from every angle I can think of so I asked him what would happen if I didn't go to the hospital.  He hummed and hawed a little bit and he said,

"You could die."

I remained calm over the phone and really appreciated the kind compliment he gave me about my blog.  As soon as I got off the phone I had another meltdown.. this time it was not as 'mini'.  The tears poured down my face as my hopes of Hawaii were crushed.  I silently scolded myself for letting myself get so excited about the trip.  I was also told how serious this was and how my life was on the line.

I was told that I was to get bloodwork done on Monday and Thursday.  If my counts did not go up, a bone marrow biopsy was going to come into sight.  This in itself scared me.  Every aspect of it.  The procedure.  The results.  The aftermath.

My parents spent the weekend going through every single alternative there was for the trip.  At this point, their decisions were completely dependent on my Monday counts.

No pressure Tianna, but if your counts aren't up one of us won't go to Hawaii either

I was an emotional mess. My anxiety was through the roof.  I couldn't calm down.  I was crying on and off, uncontrollably.  Once I finally felt like I got my crying under control, I would think of something else or talk to one of my family members and something else would trigger the tears.  My stomach wrapped into a tight knot.  Jeff made some potato soup (that was delicious) but I couldn't put anything into my stomach, I felt more nauseous with each bite, knowing fully that it was my elevated anxiety levels.

I went downstairs to go to the washroom, hoping to relieve some of my nausea and I ended up vomiting all of my food up.  It immediately calmed my stomach enough that I could go upstairs and watch some tv and try to enjoy what was left of the evening.  I asked for a pail just to have beside me and I laid on the couch with my heated blanket, still feeling nauseous and chilled.  During this time, everything was fresh and I was receiving multiple messages from friends and family members.  The support was overwhelming and I really needed to hear what you guys had to say.  I don't like to admit when I'm not okay, but I knew that I wasn't okay.  I also am not one to post a sap story to get attention,  I post my story to cope and to keep people informed but when I posted on my social media platforms, I needed support and I got support so thank you.

***

Throughout the weekend I was on the phone with my mom and then my sister and then my dad and then my grandparents non-stop.  I didn't know what was going on.  I felt helpless.  It was a lot to take in.

Laurie and Jeff were there to comfort me and they told me that they were trying to remain calm for me but they were pretty rattled too because of the state I was in and the uncertainty of my future.  Of course, when bone marrow testing comes into the conversation, you know that they are talking about cancer. Nobody mentioned that chilling word but we were all thinking it.

***

Throughout all of this, I felt uneasy because I wasn't working with who normally gets me through crises.  As much as I trust doctors, I value Dr. Pearson's opinion in situations more than anyone.  Finally, on Sunday afternoon, he sent me a text:

He was hopeful that this was an autoimmune malfunction and that bone marrow was not an option right now.  We had a very insightful conversation that lifted the biggest weight off my chest.  He even mentioned the possibility of me going on my trip.

After a bit of thought, I decided that I shouldn't go.  This was a pretty big decision for me but I really had to make sure my priorities were in line.  As much as I would love to travel to Hawaii and experience it with my family, it is not worth the risk of me getting sick and potentially putting my parents in debt.  I decided that if there wasn't going to be a bone marrow biopsy in the near future and that if I am able to go on with my daily life but just to be careful, my family should go and enjoy the trip.  Fortunately, my auntie is going to take my place and hopefully have an awesome time as well.

***

I was to complete bloodwork Monday morning.  I went to the lab that I had frequently visited last year while I was working through my studies.  It was nostalgic.  For a moment I almost didn't know if the lab was on the left or right of the hallway but it came back to me in a split second.

I handed my lab req to the secretary and wrote down an additional doctor that I would like my lab results to be forwarded to.  After what seemed like one of the shortest waits, I went in to get my bloodwork done.  The typical 5-minute process goes like this:

Lab Tech: Hello, how old are you?
Me: 19
Lab Tech: *looks at my lab req* "can you spell your last name for me?"
Me: S-C-H-M-A-L-T-Z
Lab Tech: "When's your birthday?"
Me "November 2nd '99"
Lab Tech: "Okay I think we're good to go"
Me: "I take the butterfly needle and I have really tiny veins.  They usually go out of this one on my left arm"

As soon as I sit down, I roll my left sleeve up and make a fist.  This helps my veins to pop out a little more than they already are, but still usually not enough to make the bloodwork an easy process.  Only very seldom do I let lab tech's draw blood out of my right arm.  I either have to really trust them and their skills, or my left arm is really beat up and needs a break.  Both options are risky because my right arm has a low success rate in this area.

Anyways, today (Monday), I had a student.  They always ask my permission and I always tell them that they can give it a shot but that I'm usually not anybody's favourite because my veins are so tricky.  Of course, I get a little flood of anxiety and break a sweat because I know all too well how it feels when they miss the vein and poke the needle around at different angles in my arm and/or have to retry.  The lab tech today put the needle in, and it looked as if the blood was ready to go.

"Right on," I thought, "he's got it."

I undid my fist which normally allows the blood to run into the test tube but my blood slowly trickled a little way and then it stopped.  He then started to wiggle the needle around, hoping to get the blood moving again but didn't have luck.  I was hoping that he was going to decide to just retry but he decided to keep jabbing the needle around.  There was a point where the needle, originally pointing upwards towards my shoulder was pointing sideways to my other arm.  This hurt.  I often bite my lip and jab my fingernail into another finger to cut the pain but that only goes so far.  Finally, he got it and the tube filled up really quick.  He got the bandaid on and told me to apply pressure, which is also part of the routine while the lab techs put the labels on the test tubes and dispose of their supplies used.  Towards the end, I explained how I deal with ITP and that surprisingly, my neutrophils are in a crisis and not my platelets.  I told him that I need to know my test results ASAP as my parents were still making some finalizing decisions on the vacation and because my doctors needed to know what to do with me.  He went to the back and talked to somebody and came back to tell me that it isn't possible to find out my results right away but I will get them later in the day or tomorrow.

(L-R: Sheena, Me, Tiffany)

Earlier in the day, I had texted both my cousin, Tiffany and a really good family friend, Jamie who both work in different departments of RUH.  Jamie was working in a different hospital but Tiffany's schedule aligned perfectly with ours.  About 20 minutes after my blood was taken, Tiffany gave me directions to get to her ward.  We had a really good visit for about half an hour.  It was really nice to talk to someone face-to-face that understands both the medical and emotional side.  Tiffany, like many other people in my life, has always been just a call or text away, no matter the distance.  She's always been there to vent to and she's like the older sister I never had but always wanted.  This visit truly made my day and lifted my spirits after a couple of really terrible, emotional days.  As soon as Tiffany's break was over, Jeff was back ready to pick me up.  Perfect timing.


My doctor phoned me with my results because again, they were critically low but this now wasn't a surprise.  My neutrophils jumped to 0.35, still alarmingly low.  My leukocytes were a little bit lower but higher than previously.  My platelets, for the first time in 10 years, did not show up with an "L" or "LL".  Finally.  They are at 162.  I've been staring at the beautiful, climbing line on my platelet tracker with a glimpse of hope.  Maybe remission is on its way for ITP.. maybe.



After a very thorough conversation with my doctor, I was reassured once again.  We were going to monitor and go day-by-day.  I am scheduled to get bloodwork done again on Thursday.  A bone marrow biopsy right now is not in the near future because we want to get a trend before we do more testing.

Basically, from what all of my medical team has explained to me, the best way I can explain what is going on in the simplest of terms is that my body is doing one of two things:

1. Autoimmune Disorder: My immune system is attacking my neutrophils faster than my body is making them
2. Other: For some reason, my body is not making enough neutrophils meaning that there is an underlying cause that we need to get to the bottom of

From the way Dr. Pearson put it, he is more convinced that this is an autoimmune disease, meaning that although I am at high risk, I would be at a higher risk if this wasn't an autoimmune disease.

At this point, we are hoping and praying that it is autoimmune and not something else but we don't know for sure.  Only time will tell.

***

On top of this chaotic weekend, in the middle of the day on Saturday, we received the news that my great grandma Marie passed away.  She was on a downhill spiral for approximately the past 6 months so this news was something that we knew was coming any day, but that being said, you're never really prepared to hear that a loved one has passed.  Grandma Marie was a wonderful lady who had a bold personality.  Her fashion sense was second to none.  For as long as I can remember, she always rocked her leopard print clothing and I always think of her when I see anything with that pattern.  She always spoke her mind, no matter what the context.  Grandma celebrated her 97th birthday a couple weeks prior to her passing.  

Additionally, when we first heard that she had gone to the nursing home and wasn't doing well, I drove to Leader to visit her.  We had a really good visit for about 45 minutes before I decided that grandma could probably use some rest.  My auntie Delsa, who took care of grandma, was due to be visiting grandma in the home.  Of course, if you know my grandma, she is very anxious and sometimes impatient.  She kept asking when Delsa would be there and I kept assuring her that she would be there soon.  I was planning on staying until Delsa got there but decided it was best to go.  When Delsa arrived, grandma told her that I was there.  Delsa, who knows that grandma gets quite mixed up easily, questioned her.

"Tianna? Cory's girl? The one that lives way up north in Carrot River?"

Grandma assured her that it was me and Delsa just figured that she had a mix-up.  Little did she know I was actually there.  We had a pretty good laugh about this and it's one of my favourite memories.  

My grandma had a life well lived and it was her time to go.  I am thankful for all of the memories of her and I will miss her deeply.

***

At this point, things were not playing out in my favour.  This trip was not meant to be for me.  Additionally, as if I needed a final sign, a snowstorm hit Maui.  I had already made up my mind before hearing about this but I am confident that I will be able to go on a hot vacation another time that there is no snow on the ground there while I'm trying to escape the snow here.  

As of right now, I don't know what the near or far future holds for me.  We're opening another mystery door and we're going to get to the bottom of this.  I am in good hands and I am hopeful.  I am not emotionally stable as it has been a rough week.  I might not be emotionally stable for a while, only time will tell.  This is my update as of right now.  It is as much as I know and this blog is not as humorous as I have tried to make my other ones but right now, this particular blog post is a coping post.  I need to get my thoughts out and I need to share what is going on.  

Thank you from the bottom of my heart for all of your support.  There are too many names to individually thank but each and every message brings a smile to my face, and tears to my eyes.  Thankfully, because of all of you, my tears are happy tears.  I am happy to have such an amazing support system.  I have said it before, and I am going to say it again: 

I would not be here without all of you and your unconditional support.  Thank you so so so much. 

***

I am not going to make a humorous list of what I have learned from this experience because I haven't gotten to the reflective point of this situation yet.  I want to add that I am NOT an expert in the neutropenia area or any other blood areas aside from platelets and ITP.  I'm convinced I could win an argument about ITP/platelets against almost anyone (aside from doctors and hematologists of course) because it is all I know.  My take on my situation is not a professional opinion or a resource to be used to anything because I am learning.  I am constantly digesting new information and not relying on a google search.

All that I know is that this situation has been shitty and one of the worst weekends of my entire life.  I know that I can't go on my trip and I know that I am unstable, in a lot of ways.  But I know that I will be okay.  I know that I can get through any test and that I can get through any news, good or bad.  This is another bump in the road and right now, it feels like an impossible mountain to climb.  I was hit blindsided by this but I will get through it.

Just a simple reminder: I am not sick or unwell.  I feel completely normal and as odd as it is, better than normal.  I'm simply trapped in a vicious cycle of autoimmunity.  Please don't tiptoe around me but considering my high risk of becoming ill, please do not be offended if I avoid contact with you or do not associate with you.  It is nothing personal and I am just protecting myself.  On another note, if you are sick, even have a trace of something, please do not plan to have any contact with me.  I feel terrible saying this as I know how common sicknesses are and I really hate living my life this way, but until we know what is going on, I need to take precautions.

Again, thank you for all of your support and kind words.  If you have any more questions or concerns, shoot me a message, even if you have never talked to me before.  I actually met one of my really close friends from doing a blog post around this time last year (another reason I'm thankful for having this blog).  Reach out if you want.

If you've made it this far, you're awesome.  Thank you.

Your not-so-fragile friend,

Tianna