Tuesday, September 27, 2016

exhale during the ordinary

Aug 22 - September 27

Five weeks, one day. I've been in the hospital. Yes, I was out for three days at some point in there, but it all seems a blur. I am grateful to be physically better, but I am more excited to go home and start some emotional healing. It is hard being away. It is hard on a marriage. It is hard on a child. It is hard on my mental well being. I can't wait to go back to "ordinary".

"Life is amazing. And then its awful.
And then it's amazing again.
And inbetween the amazing and the awful, it's ordinary and mundane and routine.
Breathe in the amazing,
hold on through the awful,
and relax and exhale during the ordinary.
That's just living heartbreaking, soul-healing, amazing, awful ordinary life.
And it's breathtakingly beautiful.
-L.R. Knost

I was readmitted three days after my last hospital stay to the Intensive Care Unit at the U of U hospital. I had taken a quick turn for the worst and presented with new symptoms. Severe body pain - muscle pain, joint pain, bone pain. Nausea, 103.9 fever, chills - so intense my sister had to physically wrap herself around me and hold me so they could draw blood. I've been poked 21 times in the last 18 days, one arterial line, two IV's, one midline, and one Internal Jugular line. It turns out the Epstein-Barr Virus attacked and jumped to my bone marrow (que the bone pain). It dropped my blood pressure to 95/35 (120/80 normal blood pressure) & my white blood cell count to 0.49 (10,000 normal count). Yes, 0.49 it completely and utterly wiped out my entire immune system.
I've used a bed pan, been bathed by strangers, gained and lost 23 pounds of fluid weight and atrophy of my muscles. I've been so scared, so exhausted, and so grateful.

My family and I have been completely blessed throughout this entire process. Our Arizona friends and family taking care of my husband. Inviting him over to play with their babies and making him a "sack lunch" on his first day back to school - they took direct instructions on how I would prepare his sandwich, just so it might feel like we were there with him. Keeping his fridge/pantry stocked so he didn't feel lost without food.

To our neighbors, ward and family members who babysat and cared for Hawke as I would, the last 37 days. Making sure he felt complete love and happiness. Oh, how I can't thank you enough! These generous people also cared for my siblings, and I. 30+ meals were delivered to them or I, and 10 special acts of service (besides watching Hawke) were provided to lighten the load and burden on their shoulders. Oh, how I am grateful.

This post wouldn't be complete without thanking my Uncle who came and cared for me many days and nights as I was struggling with fear and worry. And my dear Mother-in-Law who has been in Utah the same amount of days as I have been in the hospital. Hurrying here to care for me and be by my side each and every day (multiple nights as well). I have felt tremendous love. There's just something about having a mother figure around that brings peace and calming feelings. She deserves a paycheck just as big as the nurses and aides combined for all the work she did and help she provided me instead of pressing the "call light" for their assistance. 

'shampoo cap' hair wash

I graduated from Physical Therapy this last week (meaning I can walk on my own without oxygen and a stable blood pressure/hear rate). Yesterday the girl that came in to see me exclaimed, "Wow! look at you! You are doing so much better, you look so great!" "You may not remember me (I don't). I was your PT when you were in the ICU. That first day when we were able to get you to sit on the side of the bed and then stand, for just a few moments. I am so glad I got to see you again and how well you are doing!" Hearing these words gave me much hope. Hearing her gratitude reminded me that I needed to have more gratitude in how much my body has healed in really a quick amount of time.

 I still have the EBV virus running through my body, I am still tired, I am scared to go home and resume the responsibilities that come with a house and a baby. I have doubts about myself. I know I need patience as my body continues to heal, but being reminded by that PT about truly how far I've come, helped me to gain perspective and confidence that I can do hard things. 

Tuesday, September 6, 2016


This is my fifth draft of this blog. There's been several start overs and rewrites. There's just no easy or elegant way to say it, and maybe that's why it stung so much when they told me last Monday, "we believe you have Lymphoma."

Your world stops. Your mind and body go numb.
"I need to take a shower," was all I replied. Were I proceeded to barely be able to hold myself up (thanks to the railings in the hospital showers) and sobbed and sobbed the ugly cry.

My mind raced through everything. Of course I've always had the reality of dying when 'Cystic Fibrosis' is stuck at the top of all your charts, but throwing 'Cancer' up next to it, this was a whole new thing I needed to wrap my head around. Now, just because they said the words "cancer" did not mean in any way, shape or form, that was going to be the outcome, but the two words are tied so closely together, I couldn't help but think about it.

Ric and I were in a good spot. Our lives were in a good spot. He was surviving and thriving dental school. We were beginning to understand this "parenting" thing (at least during this stage). We didn't have any other debt (minus school). Things were feeling smooth, along our course of crazy life.

They were planning later that day to do a contrast CT scan to determine just how big and how many lymph nodes were enlarged. They also wanted to take a biopsy from my armpit, groin and back of my neck where they seemed to be the most obvious problem. I was trying to mentally prepare for these procedures, all while grasping my baby (who my aunt so kindly brought up to spend the day with me) and trying to word the phrase when I called Ric.

I stalled making the phone call to Ric. I stalled making the phone call to my parents. Maybe if I waited, the words would be easier to say? Maybe I could make a joke, call it "Ol' Lymphy", that'll make light of the situation making it seem less daunting of a blow? No, nothing I rehearsed or prepared to say followed out of my mouth but blubbering tears and inaudible words as I relayed the news and we tried individually to soak it all in.

The hours seemed like days before my doctor came back in that evening.

He proceeded to relay that he and another doctor were butting heads at how to approach this and what to do next. They decided that today we would have to wait and tomorrow more decisions would be made. No CT scan, no biopsy.

Tuesday morning came, along with my last blog post. Of course I didn't sleep. How could I? Despite the two sleeping pills they gave me at separate times that night, some how my mind had been able to work through it. I listened to many conference talks on Faith that night, trying to draw strength and remind myself, that my plan is not always the Lords plan. This would take awhile for me to accept. They walked in along with a whole lot of blood work. "We probably won't get results until Monday, Friday if we are lucky." Hematology did not want to come do the biopsy until they had ruled out several viruses that can cause similar or exact the exact symptoms as Lymphoma. The day dragged and quite frankly I don't remember what happened other than blood work and prepping for sinus surgery the following day.

Wednesday I woke up with a rash, a horrible rash. Monday they had started me on two new antibiotics to help my lungs - "great, I'm now having an allergic reaction to the new medication" I thought. "This rash may be the best thing thats ever happened to you," the doctors say, (plural because now anytime a doctor comes in my room there are two or three of them). "A rash is one of the clinical symptoms of Ebstein-Barr" (one of the viruses they were testing me for.) "Yes, it could be an allergic reaction to the medication we just started, we are going to stop that medication and see what happens." Wednesday proceeded to be another long day. I had to start fasting at midnight Tuesday for my Sinus surgery today. I was the last case of the day but they wanted my fasting ASAP "in case there was a cancellation they could bring me in sooner" for surgery (this never happens). The rash proceeded to get worse through the day, I developed a fever, I was so weak, tired, my head was throbbing. They ended up putting me on a glucose-saline drip because my blood sugars were dropping and at 8:00pm they finally picked me up and rolled me away for surgery. 

Thursday I woke up with no rash to be seen anywhere. And I felt so good after my procedure. The swelling hadn't fully set it and I could breathe so well through my sinuses. My head physically felt lighter. We had an incredible family volunteer to fly Ric out this coming weekend so we could be together. (Before anyone gets upset that he didn't immediately fly back, we were told to wait until the blood work came back before we made any decisions. We both felt it was okay for him to finish out the week of school.) It was a great start to a day. Nothing was on my day of events but to rest and recover. The day proceeded as normal. I had my morning treatment, I took my morning pills. Two hours later the rash is back. And with vehement vengeance it overcame my entire body. I was quite a site to be seen, and if I was accepting visitors, you bet you wish you could've been there to see! Doc's now questioning if the medication they took me off first was the wrong one, and that I might be allergic to the other medication. They decided to pull me off both of them and see what happens. Receiving many doses of Benadryl to calm the beast and trying to nap, Thursday passed along.

I woke up Friday, still with the rash But Ric was coming in town today! I was looking forward to seeing him. Oh, how my heart had longed for his presence these past couple days. That afternoon we received the results of my blood work. The values came back elevated for the Ebstein-Barr virus. Four doctors reviewed this blood work and came to the same conclusion that they believed I did in fact have Ebstein-Barr virus, which happens to be a type of Mono. It also turns out that the two medications I was started on this past week, BOTH medications have been related to ramping up the virus (which explains the rash, and WHY it came back when I was pulled off the first medication - because I still got a dose of the other med when I took my morning pills!) Puzzle pieces were beginning to fall into place. It also turns out that this rules out the option of a biopsy - for now. A flare up of Ebstein-Barr and Lymphoma look the same under a biopsy and we would get a positive/false positive either way. "Okay, I could live with that for now." When Ric walked in, I felt like I had won the lottery! 

Fast forward to today...I first thank anyone who has read this entire post and more importantly all those that have helped me and my family in many ways these last several weeks. We received so much service through food, support, babysitting, prayers, fasting, and many behind the scenes I may not know about. I am home now and feeding my baby lunch which I couldn't be more happy to do. I double and triple checked - I am only contagious if we swap spit. So don't kiss me or try to share a popsicle with me, I will say 'no'. There has never been a recorded case of infants with Mono so Hawke is okay and as for Ric well, time will only tell because I can't say no to kissing that good-looking man.