FIVE DAYS I WILL NEVER FORGET

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.

MIND RACING

It's 5:50am on Tuesday morning. I haven't slept a wink all night. The hospital is supposed to be a place for healing and it always makes me laugh how many times you're interrupted through the night. Do they sincerely think a broken or non-existent sleep is adequate for recovery or healing? Maybe that's not how all the floors are? Maybe just mine? Or specifically those caring for CF? If it's not the slow but steady stream of people in and out of your door; turning off alarming IV poles, or to poke your skin for blood draws, it's that your mind is racing of the unknown. You've just received some bad news, you're "taking it all in" - everything that's happening to your body right now. Or you may be going into surgery the next day. Worrying about your job, your family, things left unattended while you are here.

My mind is racing through many of those. Though, yes I agree to being an "open book," I also do reserve the right for some privacy and at this point am not ready to talk about all that is going on.

Though last night I had some visitors and a 12 year old boy, unbeknownst to the full extent of what's going on, he reminded me of the words, "be not afraid, only believe" (Mark 5:36). Turning my head and looking down, hiding my face with my hair, my eyes welled and my chin quivered. It was exactly what I needed to hear.

OUR MAN TURNS 28

These past two weeks we celebrated my honey's birthday.
 We were able to pull up a pretty nice party all things considering. Over the years in the hospital we've pulled together "BBQ's", birthdays, mother's day, thanksgiving, christmas, and a gender reveal(!!). You get pretty creative and it's fun to stretch your mind and resources. They have a wonderful Recreational Therapist at the University of Utah hospital that always excited to help me or our family celebrate our party ideas during our stay.

Ric turned 28. I sent a text our asking people to "describe Ric in one word" & that's what accumulated on the posters behind him. Our siblings (that were able to make it) came up for some Costa Vida, outside fresh air, ice cream, chatting and laughing. 

                                                         Happy 28th Birthday my Ricky.

GREEN GRASS

It's a good way to start the day when you can go out and play in the sunshine with your baby. I get up up 90 minutes before Hawke's scheduled wakeup time, to complete my morning treatment routine. This month I'm on the Tobramycin medication. I have been on this medication since eleven years old. I used to only have to do it, "when I was sick" and grew a bacterial infection in my lungs. That bacteria has seem to found a nice home inside me, and the last ten years I've been doing this medication every other month. The "one month off" is to help slow down my body's resistance to the drug. Having CF we are on antibiotics eminently. The bacteria and infections in our body get used to the antibiotics and mutate - developing a resistance to the meds so they become less and less effective, until the bacteria reaches full resistance. Not good - always trying to avoid this.

But my early morning treatment time has become a savory moment for me. Treatments are the first thing I do. That alarm goes off and I sleepily walk straight to my machine and get going. It's been several hours since my last one and lots of secretions have built up in my airways, morning breathing is hard. I find almost immediate relief as I start working through my treatment. This time has also become the moments I study my scriptures  ( Book of Mormon and Bible) and strengthen my relationship with my Heavenly Father. I have found it almost symbolic that my first moments of the day rely so much on him. I am struggling and he knows it. He has allowed knowledgeable people into this world to create medications and machines to help me feel relief and to keep going. He hears my morning prayers, and in those early mornings it's usually just he and I working together to get the day going. My early mornings are my worship time. I am working hard to take care of the body God created for me. Studying the words & stories of our Savior, and the Prophets of old helps me to care for my spirit and soul.

As I clean up my treatments, I'll hear the cry of my baby. My favorite moment of the day - Hawke is waking up. Living in Utah for the summer has allowed cooler temperatures and living at Grandma's house with a big, grassy backyard has been bliss. I pick him up, we go outside and work out his morning jitters, enjoying the morning sunshine and life of a new day.