Still Swimming

December 14, 2015. Two months after my new diagnosis.  I was taken aback from the response to my previous post. Over 500 hits.  Maybe that's not a lot, but, for my blog it was.  Maybe 5 people read it 100 times?  Regardless, thanks for hearing me out.  I like to write and it felt good to get some raw emotion out there.

JUST two months and what a whirlwind. Overall, I am doing great. Feeling pretty good. Tired, but good.  I've gotten back into a routine and back to being a mom (and finally giving my mom a well deserved break).  I can only lay around so much.  I couldn't wake up knowing I was just going to lay in bed all day again.  While I desperately needed the rest, I needed to get back to myself for some motivation.  I'm definitely not too proud to admit I take naps in the afternoon once in a while.  I've learned to listen to my body.  I'm nothing when I'm exhausted and not feeling well.  Last I wrote I wouldn't be seeing my pal, Dr. Nand, for 2 months.

Apparently, I missed him so much and needed to see him after a trip to the ER with chest pain. Of course, it couldn't happen during the day. I found myself laying in bed with some chest pains every time I took a breath.  I thought it was the way I was laying (again, making a reason/excuse for symptoms).  I got up and walked around the house and it continued. Now it's midnight. I was scared to go to bed. I had to wake Jason up and call mom and dad... AGAIN. Off to the ER in the wee hours of the night.  One thing though... two words get you RIGHT in... no wait... just say "chest pain" and they are hopping to it. EKG, X-ray, bloodwork, etc. All good. They called it pleurisy (inflammation of the lining around the lungs) and sent me on my way. Loyola wanted to see me after that. The chemo pill I was on has a major side effect of causing fluid pockets around the heart and lungs. I went off it for a week and after seeing him he put me back on it for "one more try." A week went by and the chest pain returned.  Back to Gleevec. I was highly discouraged after all this.  Dr. Nand talked up this "new and improved" chemo pill to work faster and put me into a deeper remission and now I can't take it... I can only hope and pray Gleevec delivers just as good of results.

As of last Monday, my white blood cell count was just over 12,000 (normal is between 4-10,000).  BIG improvement from 307,000!!!  I was sooooooooooooo happy to hear that news after the discouragement of changing chemo, because in the meanwhile, my night sweats had returned after 2 weeks of waking up dry and in the same pj's!!!  That hasn't happened in 5 months!!  Needless to say, I am just riding the roller coaster of medicine. I'm not a fan of roller coasters though.  I can get off anytime now.

Like I said, it has ONLY been two months.  SOO much has happened, but I have come SOO far in this short time. Still a ways to go.  And with this being "chronic", I will be living with this the rest of my life.

One of my favorite sayings: "you gotta laugh to keep from crying!"  Seriously, though.  I am not making light of my diagnosis.  That stupid "C" word is no joke.  Like everyone, I have my extreme moments of weakness and vulnerability.  I'm not sure it has completely sunk in.  Will it ever?  I went to the eye dr last week and filling out my paperwork and having to check the "C" word now.  My new life.  I fought the lump in my throat and smiled at the lady as I handed it over to her.

My spleen is drastically better.  Almost to the point of having no excuse anymore for a "bulging belly" - hahahaha!!  See?  I'm laughing. I tell you what though.  My spleen went down in the books.  Should have entered that sucker in the Guinness Book of World Records.  It seriously impressed so many people.  My primary Dr. wished her medical students were around to feel it.  Resident dr's at Loyola had bug eyes.  Dr. Nand (a leukemia specialist) has seen some enlarged spleens, but, NOTHING like mine.  Yeah, that's right.  Go big or go home.  Thanking some guardian angels about that one.  They can't believe the dumb thing didn't rupture.  They weren't sure how I was even eating because it was crushing my stomach.

Here we are, just 11 days until Christmas.  I'm going into this holiday with a whole new perspective.  It's so not about the gifts under the tree.  My heart is so full when I'm sitting in a room with my family, the Christmas tree blinding us with its 1,200 lights (again, go big or go home. Right, Jase??), the "Express" (as Blake has appropriately named it) going around the tracks under the tree blaring the same 2 Christmas carols over and over... and over.  I've actually gotten mad at myself a couple times for it taking me to get cancer to re-look at my priorities and look at things with a new perspective.   We are all guilty of that, though.  It's so easy to get in a rut and just go through the motions. Heck, I've even accessorized presents with ribbons and bows.  Haven't done that in years.  I'd be lying if I said I poop rainbows rainbows now - I'm still very real.  My two little darlings still have the ability to make me yell - haha!  Toddlers are no joke.  And kudos to you people who have several more than I.

I don't write this stuff for "poor me, why me".  I write it because I care.  If I can inspire one person to make a change, whether it's personal, professional, for their health, maybe to just stop and take it all in?  Something, anything. Then I have met my goal.  Life can change in a matter of seconds.  It took one phone call for me.

The prayers, cards, texts, emails, letters, phone calls, meals.  The continued outpouring of support.  I thank you.  I can never thank you enough.  Wishing you and yours a VERY Merry Christmas and a Happy and HEALTHY New Year.

Love and Hugs,

Rhonda Kay
XOXO

P.S.  I know I said its not about the gifts under the tree.  But, one materialistic thing I am secretly obsessed with...  have you seen my new fringe boots?  I scored these things on a deal.  They are sooo not me.  So not my style.  But, by golly, it's time to start living!!!!   I bought these things stepping way out of my comfort zone and now I'm in love with them.  I will even change out of my yoga pants into my skinnies (again, who am I?) so I can wear my fringe boots to go get a gallon of milk.  ANNNND to think they come in 7 other colors.  Lord, help me. Give me the strength to stay off Amazon and having the other 7 colors show up on my front porch 2 days later...

Very humbling walking into this place...

Appealing, huh?

You know you love them too!!

Just Keep Swimming...

Wednesday, October 14th, 2015.  A day I will never forget.  The day my world was flipped upside down. The day I was told I had cancer.

I took Kendall to our pediatrician this sunny day. She was going to get her tubes in two days later and we were seeing Dr. Mary for a pre-op appt.  When Dr. Mary walked into the room she took one look at me and asked what was wrong... "Nothing?!"  "Are you feeling all right, mom?" "Yeah?" "You don't look well, Rhonda." After an extensive conversation and exam she convinced me to get bloodwork done THAT DAY.  I called my internist, bloodwork was ordered, I fasted the rest of the day, went at 7PM to get poked, went home, ate something, did my thing and went to bed at 10:00. Probably asleep at 10:01 - I was usually exhausted at this point of the day, especially if I had enough in me to not lay down and take a nap that afternoon... who isn't exhausted at the end of the day after running after two energizer bunnies?

11:45 that night. Just 1 hour and 45 minutes after I crashed, I was awoken by my husband handing me the phone with the most concerned look on his face. "Here. It's Dr. Gavran..." "Hi Rhonda, I'm sorry to be calling you at this hour but I was just contacted by the lab. Your bloodwork is very abnormal. I would like you to get the ER as soon as possible. We need to run further tests. Your platelet level is very elevated which puts you at the risk of having a stroke. But, more importantly, your white blood cell count is at 307,000. These should be between 4-10,000. This is a red flag for leukemia.  If it is, in fact, leukemia we would want to start chemo right away and any other treatment necessary. With any luck, this is chronic leukemia and that's very treatable. But, we won't know until we run further tests. I am going to call the ER doctor and the oncologist on call immediately so everyone knows to be expecting you."

That's when I finally sat up. WHAT?!  Is this a dream?  Wake me from this nightmare!  I couldn't even speak. I don't even know what the Dr said after that. Here I was just woken from a dead sleep and told I had that awful, dreaded "C" word.

I eventually got myself out of bed to change. Jason called my mom and dad to come over. All I could do was say, "OH MY GOD!"  I prayed. I prayed so hard.  I sat on that bed and prayed. It seemed like an eternity until my parent's got there.  I paced in between my two sleeping babies. Kissing them, hugging them, praying over them, trying to control my sobs so to not wake them.

By 1:00AM I was checked into the ER and into a room.  Hurry up and wait. With my husband and dad by my side I was being asked a million questions. "Do you have any pain?" "No." Any discomfort?" "No" "Are you fatigued?" "Sure, I could take a nap every afternoon." "Any change in appetite?" "No." "Weight loss?" "Yes. But I was trying!"  "Anything else going on?" "Well, yes. Crazy night sweats. So bad I'm up 2-4 times to change clothes and find a new place to sleep because my spot was drenched. And shortness of breath causing a cough."  The dr feels my stomach. "Wow, your whole stomach has dropped. Your spleen is extremely enlarged taking up the whole stomach cavity."  Yet, another sign of leukemia. The more she talked, the more I wanted to crawl into a hole. She tells me to hang tight as she waited for more results of more blood that was just taken. She leaves. I start sobbing. We all started sobbing.  This can't be happening!  I'm not ready to die!  I can't die!  I have 2 babies! In my head I was composing my letters to my children and my family. I was just given my death sentence.

Around 4AM I am admitted for observation until the oncologist and pathologist review all the bloodwork to give me my diagnosis. I was told this was going to take hours because they had 300,000 cells to look at. After getting settled into my room, and knowing it would be at least late morning until I was seen, Jason and my dad decide to go home to catch some sleep. They leave and there I lay in the dark silence (well, as much silence there can be when your room is outside the nurse's station and the elderly man in the room next to you pukes his guts out every 20 minutes. Shame, I felt bad for him. I actually sat and prayed for him)  Needless to say, I didn't sleep. My mind was going here, there and everywhere and the last thing I wanted to do was close my eyes.

Jason came back around 8 for a bit as he was going with Blake on his first field trip to a pumpkin farm. We basically just sat and cried together. He left and shortly after that my nurse came in to ask if I was up for a visitor. It was my brother. Him and I cried together. The phone rang and it was my sister in law. I cried with her. My dad came back too. I WAS SO SCARED. I have leukemia. I have cancer.

Those 10 hours from the initial phone call to get to the ER until the oncologist walked in seemed like an eternity. He began asking those million questions. The ones I had answered 12 times by now. We went through them all.  He looked at me and said he's 90% sure this is chronic myeloid leukemia.  Although I still had no idea what that meant, I just remember Dr. Gavran saying, "With any luck this is chronic leukemia."  After chatting a little more he said he would be returning by noon to do a bone marrow biopsy, starting me on a chemo pill and he would be sending me home to play with my babies!!!  I cried some more. We all cried some more!  This time the tears seemed to be more tears of joy than complete fear.

November 14th, 2015. One whole month later. Here I sit on the couch. Home. With my family. SO much has happened in the past 4 weeks. I am feeling better than I have felt in MONTHS. I have since turned all my doctoring and care over to the team of brains at Loyola. I go for weekly blood draws where Loyola will monitor me. My doc doesn't feel the need to see me for two months!!  I take an oral chemotherapy pill that they feel will put me into a deep remission within just a few short months (but I will remain on for the rest of my life). WOW!  My spleen is shrinking and it lets me know its shrinking by giving me really awesome cramps/charlie horses. Minor side effects of the meds I am learning to live with. My new normal. I don't care. It means I'm getting better and healthier. My white blood cell count has drastically dropped in 4 weeks time.

Now that this disease is starting to get under control, I realize just how sick I was. I. WAS. MISERABLE. Like everyone else, I had an answer to all my symptoms. Weight loss?  I was doing my ever so faithful Weight Watchers!  I was TRYING to lose weight!  Here I thought I was doing AWESOME on it!!!  Bulging belly?  Oh, the joys of having children, right?!  Your body never goes back to the way it was. Night sweats? Oh, my hormones are going crazy. Tired/Fatigued?  Who couldn't use a nap in the afternoons?  Especially being home with some very energetic toddlers. Tired/Sore muscles?  Gosh, I'm out of shape. Shortness of breath/cough?  Those stupid allergies. The signs were all there but I didn't feel sick. I had no pain. I ate. I didn't know I had leukemia.

What I do know is I have the absolute BEST support system. My husband, my parents, my family, my friends. The outpouring of love, support and, most importantly, prayers, has been overwhelmingly amazing. They all need it just as much as me. I am forever grateful for everyone fighting right along with me.  I am also forever grateful for Dr. Mary Collins for getting this whole ball rolling. I may have left her office in tears because I was scared, but, because of her, this was caught and already beginning to show that its headed in the right direction She has been a tremendous support through it all too.  Providing me with sound advice and being a sounding board for me. Together, we got this. Together, we are going to kick cancer's ass!  Love you all!