It was the bottom of the 9th of game 7 of the World Series. The Indians tied it up in the 8th. The Cubs made the 3rd out to retire the side and we were heading into extra innings. This was it. The Cubs HAD to score. Everything was coming down to this. A 108 year old curse was riding on a run. "Please God MAKE THEM DO THIS!!!!!!" I felt so deflated after having the lead up until the 8th inning. It went to commercial. A Tide commercial came on, and wouldn't you know the actress stood there with two anchors on her shirt. That's when I knew. THERE WAS MY SIGN. The Cubbies were going to pull this off and did they ever. They scored their two runs, Bryant to Rizzo for the 3rd out and HOLY COW!!! CUBS WIN! CUBS WIN! (As if anyone needed that replay because I'm pretty sure the world was watching)
Hope anchors the soul.
My life has thrown up anchors. My children get so excited when they see an anchor out and about, "Mommy!! An anchor!!!!" If they only knew. It's amazing what they do know and pick up on. Anytime I'm off to the doc, "Mommy, you have to go check your tummy?" They were told a million times in the beginning to be careful of mommy's tummy. Most nights I'm asked by Blake if I've taken my medicine. He knows mommy has to take her pills to feel better. It is sometimes a challenge to have such little ones and not feel well, but, they keep the mood light and keep us laughing. Especially on nights like tonight when Santa talked to Blake through the vent in his room while in a time out. Haha!!! 'Tis the season.
So two weeks ago I had a follow up appointment. I left there a little uneasy but tried not to get all worked up. Usually, the night after an appointment or the following day it hits me and I lose my crap. Even after good appointments. It's the whole idea of walking into a cancer center and seeing SO many sick people and the flood of "what ifs" and the unknown and... and... and... Ugh. I'm there because I'm sick too. Even after a year its still kinda surreal. Some times we hear people in the lobby calling loved ones and joyfully passing on the great news that they are in remission. And other times, well, just the opposite. When I walk in I go straight to the lab to get signed in to get poked and find my place to stand and wait in my little corner and bury my head in my phone.
My levels are low. Low, like, are you sure you're feeling well, low. Yes, I'm generally feeling great these days. I was hoping my blood work was going to reflect that. Dr. Nand wasn't totally pleased with my results. He was thinking out loud with us and talking about changing my treatment pill or maybe changing the dosage again. Before doing any of that he wanted to wait for the results of the gene study. I think I explain the the gene study every post but people are always asking... SO, the gene study is an in depth blood test that measures the amount of leukemia cells in my blood. Looking for the presence of the Philadelphia chromosome which is the abnormality cell that makes up Chronic Myeloid Leukemia. The ultimate goal is for this to be ZERO PERCENT. No leukemia present. We need it to be going DOWN. Two months ago it actually had increased....
I was laying down with Kendall, trying to get her to nap when that Maywood number showed up on my phone 5 LONG days later. My stomach drops and I answer knowing I'm about to get the gene study results.
"Ms. Dixon?"
Dr Nand?!?!?! WHY ARE YOU CALLING????? As I sat up ready to run for the hills.
(It is usually his physician assistant that is always making these calls so when I heard his voice I assumed it wasn't good news..................)
He kinda giggled and said, "I have great news. Your gene study came back and I'm pleased to be able to tell you your level is 2.728% down from 6%!!!!!!!!!
Cue immediate tears and and a huge "THANK GOD!!!!"
He apologized for getting ahead of himself at the appointment but admitted again that I'm a hard case. "You go against all normalities in treating this disease and I'm always being kept on my toes with you. Continue treatment as we are and WHEN this number hits 0 we will lower the dosage in hopes of bringing your levels back up."
WHEN THAT NUMBER HITS 0 I WILL HEAR THE "R" WORD...................... JUST SAYIN'
A few weeks ago I hit the one year anniversary of all hell breaking loose. Yippee. (*rolls eyes*) What an "anniversary" to have. Jason and I have done a lot of reflecting and talking about the months and days leading up to October 14th. I specifically remember a distinct conversation between us just days before that Wednesday. My night sweats were completely out of control. It was one morning after being up to change 4 times.... FOUR. He told me it was time to get in to see a doctor. I looked him right in the eye and with tears in mine said "But, what if there's something seriously wrong with me??" I called later that day to get in for my yearly physical and it was on the schedule for 10 days later. Little did I know that appointment would turn into a follow up, rather than my initial visit. It wasn't even that Dr. that started this nightmare. It was our childrens pediatrician. CRAZY.
Life is so precious. So uncertain. Stop talking. Start doing. Live it up and live your dreams. Throw it all in the F it bucket and LIVE YOUR LIFE. What are you waiting for?
Thanks for checking in. Thanks for listening. Thanks for always praying. This was a tough one to write for some reason. I guess it was just time for a good cry.
Love Y'all!
Rhonda Kay
xoxo
Sunday, November 6, 2016
Monday, September 5, 2016
Another Trip Around the Sun
Good grief! How about that weather this long, holiday weekend?! You're welcome ;) It was like God let me dial up the weather as I turned another year older and wiser - the big 3-5. Thank God! 34 needed to go. Get. Scram. Peace out. Don't let the door hit you on the way out. It was a near perfect day spent with the people that matter most to me, my family. I woke up Sunday morning to my Blake running into our room so excited to let me know "Daddy went to the store to buy sprinkles for your cake, mommy!! We are going to make your cake but it's a surprise!!" Ha! My husband and kids made me my birthday cake. Yellow cake out of a box, chocolate frosting and LOADS of sprinkles. You could say it was a "want some cake with those sprinkles?" kinda cake. That's my fave. Don't try to impress me with those overpriced bakery cakes. My day only got better from there. I couldn't stop thanking the good Lord up above for another year. I found myself quite emotional at times. My family and I were gathered around the bonfire as they sang to me and I made my wish as I blew out the candles. Glad it was dark out... my eyes welled up with tears... for I think it's pretty obvious what my wish was this year.
Which brings me to my disease update. Ewwww. Disease.
My levels remain low and are maintaining low. While he would like to see them come up a bit he says things are "looking good." The results from my gene study last month show the percentage of leukemia cells in my blood went up slightly (ultimate goal is for this to be 0%. NOT GOING UP!!!) This could be from being off treatment for a while after the levels bottomed out or my body just hating Gleevec (my chemo). If, when I go back next month, it goes up again, we will change to a whole new chemo treatment. The world of medicine. An emotional roller coaster. For as far as "they" have come with all this stuff sometimes I just want to scream, "FIGURE IT OUT!!!!!"
Our two darlings are a great distraction from the frustrating, emotional, scary, and unknown roller coaster I'm on. Like when Kendall Kay sticks her hands down her pull up to let me know she pooped. Like when Blake David makes me listen to the "Bucket Truck" song on YouTube 87 times before 8AM (search it. Its quite catchy). Like when Kendall comes walking out of her room in her high heels, cross body purse, and necklace on and invites me into her room for a tea party. Like when Blake asks me to play baseball and rips one back at me nailing me in the chest. Some days are long but I wouldn't trade being able to stay home with them for anything. For they give me the drive to fight on.
September is Blood Cancer Awareness month. While I don't feel its anything to celebrate or make a big deal out of, (why give the "C" word more attention that it already gets???) I do ask of one thing from all of you between the ages of 18 - 60. GET SWABBED. That's it. The most simple act of swabbing the inside of your cheek gets you entered into the bone marrow donor database. If you have done this within the past 10 years, thank you! Make sure your info is up to date so they can contact you if needed. Could you imagine getting the call that you are a match and have the potential to give someone a new life? A new birthday? Wow. I will even include the link for you! click here!!!!!! This is the least I can do. We need to wipe out blood cancer.
Actually, we need to wipe out ALL cancer.
With my birthday, always comes the unofficial end of summer. I don't know about you but I'm welcoming fall with open arms. I think I'll have a piece of leftover birthday cake before bed. And about that wish... What do you say, God? As always, thanks for praying and keeping tabs.
Love,
Rhonda Kay
XOXO
Which brings me to my disease update. Ewwww. Disease.
My levels remain low and are maintaining low. While he would like to see them come up a bit he says things are "looking good." The results from my gene study last month show the percentage of leukemia cells in my blood went up slightly (ultimate goal is for this to be 0%. NOT GOING UP!!!) This could be from being off treatment for a while after the levels bottomed out or my body just hating Gleevec (my chemo). If, when I go back next month, it goes up again, we will change to a whole new chemo treatment. The world of medicine. An emotional roller coaster. For as far as "they" have come with all this stuff sometimes I just want to scream, "FIGURE IT OUT!!!!!"
Our two darlings are a great distraction from the frustrating, emotional, scary, and unknown roller coaster I'm on. Like when Kendall Kay sticks her hands down her pull up to let me know she pooped. Like when Blake David makes me listen to the "Bucket Truck" song on YouTube 87 times before 8AM (search it. Its quite catchy). Like when Kendall comes walking out of her room in her high heels, cross body purse, and necklace on and invites me into her room for a tea party. Like when Blake asks me to play baseball and rips one back at me nailing me in the chest. Some days are long but I wouldn't trade being able to stay home with them for anything. For they give me the drive to fight on.
September is Blood Cancer Awareness month. While I don't feel its anything to celebrate or make a big deal out of, (why give the "C" word more attention that it already gets???) I do ask of one thing from all of you between the ages of 18 - 60. GET SWABBED. That's it. The most simple act of swabbing the inside of your cheek gets you entered into the bone marrow donor database. If you have done this within the past 10 years, thank you! Make sure your info is up to date so they can contact you if needed. Could you imagine getting the call that you are a match and have the potential to give someone a new life? A new birthday? Wow. I will even include the link for you! click here!!!!!! This is the least I can do. We need to wipe out blood cancer.
Actually, we need to wipe out ALL cancer.
With my birthday, always comes the unofficial end of summer. I don't know about you but I'm welcoming fall with open arms. I think I'll have a piece of leftover birthday cake before bed. And about that wish... What do you say, God? As always, thanks for praying and keeping tabs.
Love,
Rhonda Kay
XOXO
Wednesday, June 22, 2016
Not Out Of the Woods... BUT...
I'm back on the trail and heading in the right direction. I took a detour there for a bit and it got rocky.
In May I went for a checkup. Did my usual blood work first and met with Dr. Nand. He walked in and asked his usual 100 questions as he pulled up my results from just minutes ago. "Are you feeling OK?" That's when I knew my suspicions were accurate. I had been tired again. As in "October tired" as I said to Jason one day. Back to counting down the seconds until nap time, frequent nose bleeds, bruising with the touch of a feather, etc. Something was up. My counts were all VERY low. 8 months ago, dangerously high. That day, dangerously low. In his very calm and professional demeanor, Dr. just said to stop treatment until counts come back up. In his words, "chemo just may be working too well." Weekly draws continued to show decreased levels. Nothing was coming up they way he wanted/suspected it would.
In the meanwhile, I started feeling GREAT off that chemo CRAP!!! My energy shot back and that awful nausea disappeared. (Strange, considering the blood draws weren't reflecting that). ANNNND.. my hubby surprised me with a trip to Nashville!!! I was beyond excited...
Until that Monday before we were to leave. I got our sweet babies down for a nap and snuck out to treat myself to a mani/pedi in case I were to run into Keith Urban. There I was, sitting there, all checked in, color of choice picked out and in my hand - Koala Berry, of course! - and my phone rings. It was that Maywood number. The number that makes my stomach sink and heart race even with just an appointment confirmation call. I stepped out to answer. It was Dr. Nand's nurse calling to relay a message. "Hi Rhonda, your blood work continues to show no improvement, getting worse if anything. We need to schedule a bone marrow biopsy sooner than later to see what's going on. Dr initially suggested doing it next week when you're back for your checkup, but, he'd rather not wait in case its something more serious. Can you come Wednesday?" Obviously, my health is WAY more important than a VERY much anticipated vacay... but, seriously? I asked to have HIM give me a call ASAP. I had questions/concerns/comments. I stepped back into the salon to return my polish and left. Well, sat in my car and waited for his call back. And prayed. And cried. And freaked out. Because that's just what I do.
It probably wasn't 5 minutes later when he called. Big, scary words were flying out of his mouth. "I'm concerned, Ms. Dixon, your leukemia could be turning into this. Could be turning into that. This could be happening. That could be happening." I won't repeat because I've chosen to now block out that conversation. I proceeded to mention I was to leave the next day for a trip day so if there was any way I could come first thing the next morning, I would appreciate that. "You want to have a biopsy and then go on vacation?" Well, NO, I DON'T!!! Who does??? But, YOU want answers and YOU are concerned and that makes ME hysterical and ME requesting to have this done ASAP!!! It got scheduled ;)
You guys, I was scared. Like, SO scared. Like worse than "October scared." And now I had to drive back home. Hysterical. Phone ringing like crazy between Jason, Mom, Dad and Me. I called my oldest, dearest BFF and she talked me off a cliff. I'm a redhead! I can be feisty (no comments, please) and stubborn. But, I am also sensitive and emotional. Yikes! I blame my babies for that one. Never used to be.
Things settled a bit later into the evening and Jason worked up the courage to ask the obvious (ha!)... "Do you still think you're up for going?" Honestly, I wasn't sure. I was leaning towards absolutely not, actually. I wasn't in the mood for anything. I had mentally shut down.
Later into the evening when I should have been long gone sleeping, I started packing my bag. I started coming back to my senses and realized I was letting my DISEASE ruin me. Did I want to hobble around Nashville after getting my bones drilled? No. But, what was I going to do? Sit in a dark hole and wait for that Maywood number to show up days later with results? Pack your bags, Jase! We're going to Nashville!
I got poked at 9AM and by 10 I was laying on that table squeezing the life out of Jason's hands because, well, I'm not going to sugar coat it. Bone marrow biopsies just plain suck. Maybe one blog I'll write a detailed "Rhonda's description" of one. I will say, the worst part is the first few shots of nova cane! Not funny. Auger down all you want after that, but those first shots??? HOLY OUCH!!! HAHA!! Giggling to myself picturing my brother (not the EMT) reading this and passing out. He can't even handle when I tell him about my weekly blood draws. Oncologist in the morning, next stop Nashville!! If you ain't living, you're dying! Off we went. After a stop for lunch, of course. Because ever since day 1 of all this whole nightmare, this girl right here has had an appetite much to dr's surprise. And, boy, is the scale reflecting that lately... But, I digress.
Jason and I had the most ridiculously fabulous time in Nashville. I seriously can't believe I even contemplated not going. Knowing what I know now... how we had too much fun, I really would have regretted that decision. Rooftop dinner, fun entertainment at famous Tootsie's, stopping in a few other staple Broadway bars, posing on the red carpet, Joe Nichols private fan club party, surprised with a shopping spree for FRINGE COWGIRL BOOTS!!, and onto the CMT awards show. That was just our first 24 hours... I was sore, and pooped. But, having too much fun to even care.
I'd be lying if I said I didn't think about my health amidst all this. That black cloud tried hovering a few times. That's when I'd silently mutter in my brain, "I'm giving it to you, God. Throw me a sign!" You wouldn't believe some of the things he was throwing me... Some very subtle and some so obvious and in my face I'd even have to point them out to Jason. One crazy example: We were standing among hundreds of people at one of the side stages waiting for the concert to start. The girl in front of me lifts her hair off her neck and the anchor tattoo on the back of her neck stares back at me. She steps away for a bit and we move up eventually making our way to front row (don't get too excited... it was just David Nail) and the girl next to me has a much smaller tattoo behind her ear... another anchor.
Hope anchors the soul. Love, LoVe, LOVE that saying! It has become my motto. Hence my obsession with anchors!!! Never lose HOPE!
Signs? Coincidence? Call it what you want. After my follow up appointment last week I'm going to stick with my "signs" story. The good Lord was hearing my and your prayers. Several tests were run with my bone marrow sample. He said he checked it all. Nothing of concern showed up anywhere. No abnormal cells. Things seem to be aligning nicely. There was one gene study he was still waiting on (takes awhile) and he would call me if he saw something he didn't like. Haven't heard from him. My blood work has also begun to trend upwards. So while he was stumped as to why my blood work was bottoming out, he wasn't seeing any reason to be concerned. He simply called it me being "special" and just "keeping him on his toes." Duh, doc. Have you seen my hair? All jokes aside - one quite encouraging test we talked about - and forgive my lack of medical terminology knowledge... "One test we look for the presence of the Philadelphia chromosome blah blah blah and we look for the levels of the blah blab blah to be under 35. Blah blah blah yours is 25. That's very good. We're getting there" Amen! Back on treatment. We will play with dosage as my body tells us what it can handle. I knew hearing 'Who Wouldn't Wanna Be Me' as we neared the hospital was, perhaps, another sign.
I had so much more on my mental notepad to touch base on but I'm going to leave it at that for now. Mainly Nashville stuff because now I'm obsessed. Like how we went for a drive through the country and checked out Franklin, TN. And how we MAY have stopped for a drink at the Franklin Starbucks and waited for the Black Bentley to pull up and out pop Keith... He didn't. But, I did enjoy an ice cold shaken green tea lemonade with my husband on a beautiful, hot Tennessee day. Maybe I need to write a little more often and not as much. Felt good again though. I feel so much lifted off my shoulders when I write it out. My plan to "stay under the radar" didn't work so well this time. Thank you for the continued prayers and support.
Now about that mani/pedi... Let's try that again.
Love y'all!
Rhonda Kay
XOXO
In May I went for a checkup. Did my usual blood work first and met with Dr. Nand. He walked in and asked his usual 100 questions as he pulled up my results from just minutes ago. "Are you feeling OK?" That's when I knew my suspicions were accurate. I had been tired again. As in "October tired" as I said to Jason one day. Back to counting down the seconds until nap time, frequent nose bleeds, bruising with the touch of a feather, etc. Something was up. My counts were all VERY low. 8 months ago, dangerously high. That day, dangerously low. In his very calm and professional demeanor, Dr. just said to stop treatment until counts come back up. In his words, "chemo just may be working too well." Weekly draws continued to show decreased levels. Nothing was coming up they way he wanted/suspected it would.
In the meanwhile, I started feeling GREAT off that chemo CRAP!!! My energy shot back and that awful nausea disappeared. (Strange, considering the blood draws weren't reflecting that). ANNNND.. my hubby surprised me with a trip to Nashville!!! I was beyond excited...
Until that Monday before we were to leave. I got our sweet babies down for a nap and snuck out to treat myself to a mani/pedi in case I were to run into Keith Urban. There I was, sitting there, all checked in, color of choice picked out and in my hand - Koala Berry, of course! - and my phone rings. It was that Maywood number. The number that makes my stomach sink and heart race even with just an appointment confirmation call. I stepped out to answer. It was Dr. Nand's nurse calling to relay a message. "Hi Rhonda, your blood work continues to show no improvement, getting worse if anything. We need to schedule a bone marrow biopsy sooner than later to see what's going on. Dr initially suggested doing it next week when you're back for your checkup, but, he'd rather not wait in case its something more serious. Can you come Wednesday?" Obviously, my health is WAY more important than a VERY much anticipated vacay... but, seriously? I asked to have HIM give me a call ASAP. I had questions/concerns/comments. I stepped back into the salon to return my polish and left. Well, sat in my car and waited for his call back. And prayed. And cried. And freaked out. Because that's just what I do.
It probably wasn't 5 minutes later when he called. Big, scary words were flying out of his mouth. "I'm concerned, Ms. Dixon, your leukemia could be turning into this. Could be turning into that. This could be happening. That could be happening." I won't repeat because I've chosen to now block out that conversation. I proceeded to mention I was to leave the next day for a trip day so if there was any way I could come first thing the next morning, I would appreciate that. "You want to have a biopsy and then go on vacation?" Well, NO, I DON'T!!! Who does??? But, YOU want answers and YOU are concerned and that makes ME hysterical and ME requesting to have this done ASAP!!! It got scheduled ;)
You guys, I was scared. Like, SO scared. Like worse than "October scared." And now I had to drive back home. Hysterical. Phone ringing like crazy between Jason, Mom, Dad and Me. I called my oldest, dearest BFF and she talked me off a cliff. I'm a redhead! I can be feisty (no comments, please) and stubborn. But, I am also sensitive and emotional. Yikes! I blame my babies for that one. Never used to be.
Things settled a bit later into the evening and Jason worked up the courage to ask the obvious (ha!)... "Do you still think you're up for going?" Honestly, I wasn't sure. I was leaning towards absolutely not, actually. I wasn't in the mood for anything. I had mentally shut down.
Later into the evening when I should have been long gone sleeping, I started packing my bag. I started coming back to my senses and realized I was letting my DISEASE ruin me. Did I want to hobble around Nashville after getting my bones drilled? No. But, what was I going to do? Sit in a dark hole and wait for that Maywood number to show up days later with results? Pack your bags, Jase! We're going to Nashville!
I got poked at 9AM and by 10 I was laying on that table squeezing the life out of Jason's hands because, well, I'm not going to sugar coat it. Bone marrow biopsies just plain suck. Maybe one blog I'll write a detailed "Rhonda's description" of one. I will say, the worst part is the first few shots of nova cane! Not funny. Auger down all you want after that, but those first shots??? HOLY OUCH!!! HAHA!! Giggling to myself picturing my brother (not the EMT) reading this and passing out. He can't even handle when I tell him about my weekly blood draws. Oncologist in the morning, next stop Nashville!! If you ain't living, you're dying! Off we went. After a stop for lunch, of course. Because ever since day 1 of all this whole nightmare, this girl right here has had an appetite much to dr's surprise. And, boy, is the scale reflecting that lately... But, I digress.
Jason and I had the most ridiculously fabulous time in Nashville. I seriously can't believe I even contemplated not going. Knowing what I know now... how we had too much fun, I really would have regretted that decision. Rooftop dinner, fun entertainment at famous Tootsie's, stopping in a few other staple Broadway bars, posing on the red carpet, Joe Nichols private fan club party, surprised with a shopping spree for FRINGE COWGIRL BOOTS!!, and onto the CMT awards show. That was just our first 24 hours... I was sore, and pooped. But, having too much fun to even care.
I'd be lying if I said I didn't think about my health amidst all this. That black cloud tried hovering a few times. That's when I'd silently mutter in my brain, "I'm giving it to you, God. Throw me a sign!" You wouldn't believe some of the things he was throwing me... Some very subtle and some so obvious and in my face I'd even have to point them out to Jason. One crazy example: We were standing among hundreds of people at one of the side stages waiting for the concert to start. The girl in front of me lifts her hair off her neck and the anchor tattoo on the back of her neck stares back at me. She steps away for a bit and we move up eventually making our way to front row (don't get too excited... it was just David Nail) and the girl next to me has a much smaller tattoo behind her ear... another anchor.
Hope anchors the soul. Love, LoVe, LOVE that saying! It has become my motto. Hence my obsession with anchors!!! Never lose HOPE!
Signs? Coincidence? Call it what you want. After my follow up appointment last week I'm going to stick with my "signs" story. The good Lord was hearing my and your prayers. Several tests were run with my bone marrow sample. He said he checked it all. Nothing of concern showed up anywhere. No abnormal cells. Things seem to be aligning nicely. There was one gene study he was still waiting on (takes awhile) and he would call me if he saw something he didn't like. Haven't heard from him. My blood work has also begun to trend upwards. So while he was stumped as to why my blood work was bottoming out, he wasn't seeing any reason to be concerned. He simply called it me being "special" and just "keeping him on his toes." Duh, doc. Have you seen my hair? All jokes aside - one quite encouraging test we talked about - and forgive my lack of medical terminology knowledge... "One test we look for the presence of the Philadelphia chromosome blah blah blah and we look for the levels of the blah blab blah to be under 35. Blah blah blah yours is 25. That's very good. We're getting there" Amen! Back on treatment. We will play with dosage as my body tells us what it can handle. I knew hearing 'Who Wouldn't Wanna Be Me' as we neared the hospital was, perhaps, another sign.
I had so much more on my mental notepad to touch base on but I'm going to leave it at that for now. Mainly Nashville stuff because now I'm obsessed. Like how we went for a drive through the country and checked out Franklin, TN. And how we MAY have stopped for a drink at the Franklin Starbucks and waited for the Black Bentley to pull up and out pop Keith... He didn't. But, I did enjoy an ice cold shaken green tea lemonade with my husband on a beautiful, hot Tennessee day. Maybe I need to write a little more often and not as much. Felt good again though. I feel so much lifted off my shoulders when I write it out. My plan to "stay under the radar" didn't work so well this time. Thank you for the continued prayers and support.
Now about that mani/pedi... Let's try that again.
Love y'all!
Rhonda Kay
XOXO
Friday, March 18, 2016
I've got a little spring in my step!
Hello! It's been a while. I really appreciate all the kind words and people constantly looking out for another blog post. I love to write and I love it even more that people actually read it. I've been laying low - trying to stay under the radar. There isn't a whole lot going on in my world and that's a very fabulous thing to be able to say in the cancer world.
I visited my Dr. Nand a couple weeks ago. Got poked a few times, chit chatted, cracked some jokes and patiently waited for that Maywood number to ring my phone with the results of my bloodwork, and, most importantly, another gene test. Remember, these gene tests are my tell all...
My bloodwork showed my white blood cells, red blood cells, platelets and hemoglobin are now low. Out of range on the low side now. He tells me this is all ok and normal for this stage of treatment. The gene test shows 5% leukemia cells!!! This is down from 100%, then 17%!!! I can only keep praying that in another two months that gene test shows NADA. He did mention this is taking a bit longer than he'd like to see, but nothing to worry about. "You are doing excellent, Ms. Dixon" PRAISE THE LORD!
I suppose taking a bit longer is better than not taking at all. That's how I'm looking at it, at least. Those words ("This is taking longer than I'd like to see") kind of resonates through my head and I find myself discouraged. Chin up, buttercup! While it feels like 5 years, I remind myself it's been 5 months and I feel like a whole new Rhonda in those 5 months compared to the past year. Yikes! I was VERY sick and living like a zombie for so long. I visited my OBGYN for my yearly last month and in talking with him and going over my initial "get to the ER numbers" he just looked at me and shook his head. After a brief silence, he looked up at me and said, "Im not sure how you did it. I'm not sure how you were getting up every day." As I wiped away some tears and shrugged my shoulders he said, "you are so lucky to even be here today." I've heard those few lines so many times in the past few months.
Slowly, I am trying to find the motivation to get back into running! Some of those pounds I so proudly lost (with the help of my secret weapon - leukemia- ha!) have found their way back onto my thunder thighs. But, today I actually ran... Ok jogged... SLOWLY jogged 2.5 miles!!! I've come a long way from "I just need to lay down for a bit", to that turning into 4 hour naps, to apologizing to my husband for "not having it in me to make dinner", and in bed at 7:30 for the night. How I never thought I was sick was beyond me. I tried to keep a smile on my face and tell myself to "snap out of it, what's your problem?! You're fine!!" Little did I know I had a reason for being miserable.
Enough about me! Happy Spring! The trees are budding, my daffodils are growing and the grass is green! New life in so many ways. The sunshine and warmer temps are giving me that bounce to my step. I hope for you too. Until next time! Thanks for checking in.
Be well!
Love,
Rhonda Kay
I visited my Dr. Nand a couple weeks ago. Got poked a few times, chit chatted, cracked some jokes and patiently waited for that Maywood number to ring my phone with the results of my bloodwork, and, most importantly, another gene test. Remember, these gene tests are my tell all...
My bloodwork showed my white blood cells, red blood cells, platelets and hemoglobin are now low. Out of range on the low side now. He tells me this is all ok and normal for this stage of treatment. The gene test shows 5% leukemia cells!!! This is down from 100%, then 17%!!! I can only keep praying that in another two months that gene test shows NADA. He did mention this is taking a bit longer than he'd like to see, but nothing to worry about. "You are doing excellent, Ms. Dixon" PRAISE THE LORD!
I suppose taking a bit longer is better than not taking at all. That's how I'm looking at it, at least. Those words ("This is taking longer than I'd like to see") kind of resonates through my head and I find myself discouraged. Chin up, buttercup! While it feels like 5 years, I remind myself it's been 5 months and I feel like a whole new Rhonda in those 5 months compared to the past year. Yikes! I was VERY sick and living like a zombie for so long. I visited my OBGYN for my yearly last month and in talking with him and going over my initial "get to the ER numbers" he just looked at me and shook his head. After a brief silence, he looked up at me and said, "Im not sure how you did it. I'm not sure how you were getting up every day." As I wiped away some tears and shrugged my shoulders he said, "you are so lucky to even be here today." I've heard those few lines so many times in the past few months.
Slowly, I am trying to find the motivation to get back into running! Some of those pounds I so proudly lost (with the help of my secret weapon - leukemia- ha!) have found their way back onto my thunder thighs. But, today I actually ran... Ok jogged... SLOWLY jogged 2.5 miles!!! I've come a long way from "I just need to lay down for a bit", to that turning into 4 hour naps, to apologizing to my husband for "not having it in me to make dinner", and in bed at 7:30 for the night. How I never thought I was sick was beyond me. I tried to keep a smile on my face and tell myself to "snap out of it, what's your problem?! You're fine!!" Little did I know I had a reason for being miserable.
Enough about me! Happy Spring! The trees are budding, my daffodils are growing and the grass is green! New life in so many ways. The sunshine and warmer temps are giving me that bounce to my step. I hope for you too. Until next time! Thanks for checking in.
Be well!
Love,
Rhonda Kay
Thursday, January 14, 2016
Up, Up, Up. Can Only Go Up From Here
Name that tune! Bonus point if you can refresh my memory of the linedance that goes with it!
3 Months post diagnosis and good things are happening. I had a great visit last week with my pal, Dr. Nand. It was time to see him. I NEEDED to see him. This man has such a calming demeanor while being ultra professional and sticking to business. I needed to hear what he had to say. Yeah, I was feeling great and all, but, who knows what the heck was going on inside me. I felt fine 6 months ago too, but, we all know now all hell was breaking loose!!! Like I said, he's my pal.
White blood cells down to 5,200 (down from 307,000), platelets reading 152,000 (down from 1.4 MILLION), hemoglobin creeping up slowly, but surely, to 11.1. All "normal"... And as some near and dear friends have asked, "Rhonda Kay, were you ever NORMAL??" Gotta love 'em...
My spleen is still "feelable", but nearly back to its assigned seat. It is still at a "would you mind if I let my resident doctor step in to feel this?" level. Haha!!! And get this! Are you ready?? She did her dr business and then leaned down in my ear and said, "Seriously, cute boots!! I LOVE them!!" You guessed it, I was wearing my fringe boots.
I was taken off 2 medications, weekly blood draws dropped down to once a month and overall, feeling awesome. I say that so cautiously because I have cancer, but, I'm feeling great! I have to make a conscious effort to not allow cancer, chemo, the unknown, and God knows what else, run crazily through my mind. It's still hard to close my eyes and go to sleep some nights...
A series of very specific gene tests will be taken to measure the presence of the Philadelphia chromosome... and determine WHEN I go into remission. Not if, WHEN. That Maywood number showed up on my phone Tuesday afternoon and I knew Dr. Nand was calling with the results of Friday's gene test. My heart mayyyyy have started racing a little bit. Yet, another great report. 17% leukemia cells, down from 100%. "This is very good, Ms. Dixon considering your disease was at 100% burden." BOOM!!!
Disease... can we just chat about this word a little? Disease. I'm not sure what word is worse, cancer or disease. It seriously makes my skin crawl when I hear it. It's like I'm the sick and diseased cow in the herd. Like I'm going to give you the cooties if I lay a hand on you. Ugh!!! Awful. OK, thanks for letting me get that off my chest.
I was recently introduced to a blog (that I've already binge read) about a young woman with the same diagnosis. I was also put in contact with a young woman (with whom I've spoken to on the phone and emailed back and forth). Joined a CML support group. I follow several CML and leukemia pages and let me tell you, these have all been really great for me. To hear someone else's story and be able to relate to such raw emotion, feelings, thoughts, medication side effects, etc. When you hear them say exactly what you're feeling it's a major sigh of relief to realize you are not alone. That all of this is my new "normal" and it's going to be ok!
I've said it before, and I'll say it again a million times... I have THE best support system, but, they can only relate and help me along so much. To actually live it, and feel it is SO different. Thank you to those who have reached out to CML peeps and introducing me. It has helped more than you know. And to Dr. Mary who is still so wonderful to sound off on and always checking in. My guardian angel here on Earth! She saved my life!!!
So, at this point I will be staying on my Gleevec (thank God and science for Gleevec!!!) and just keep on, keepin' on. And as my cute Dory figurine sitting on the dash in my car, given to me by a dear friend, is always reminding me to JUST KEEP FRICKEN SWIMMING.
2016 is going to be the year I KICK CANCERS ASS!!! Happy New Year, my friends.
Be well,
Rhonda Kay
XOXO
3 Months post diagnosis and good things are happening. I had a great visit last week with my pal, Dr. Nand. It was time to see him. I NEEDED to see him. This man has such a calming demeanor while being ultra professional and sticking to business. I needed to hear what he had to say. Yeah, I was feeling great and all, but, who knows what the heck was going on inside me. I felt fine 6 months ago too, but, we all know now all hell was breaking loose!!! Like I said, he's my pal.
White blood cells down to 5,200 (down from 307,000), platelets reading 152,000 (down from 1.4 MILLION), hemoglobin creeping up slowly, but surely, to 11.1. All "normal"... And as some near and dear friends have asked, "Rhonda Kay, were you ever NORMAL??" Gotta love 'em...
My spleen is still "feelable", but nearly back to its assigned seat. It is still at a "would you mind if I let my resident doctor step in to feel this?" level. Haha!!! And get this! Are you ready?? She did her dr business and then leaned down in my ear and said, "Seriously, cute boots!! I LOVE them!!" You guessed it, I was wearing my fringe boots.
I was taken off 2 medications, weekly blood draws dropped down to once a month and overall, feeling awesome. I say that so cautiously because I have cancer, but, I'm feeling great! I have to make a conscious effort to not allow cancer, chemo, the unknown, and God knows what else, run crazily through my mind. It's still hard to close my eyes and go to sleep some nights...
A series of very specific gene tests will be taken to measure the presence of the Philadelphia chromosome... and determine WHEN I go into remission. Not if, WHEN. That Maywood number showed up on my phone Tuesday afternoon and I knew Dr. Nand was calling with the results of Friday's gene test. My heart mayyyyy have started racing a little bit. Yet, another great report. 17% leukemia cells, down from 100%. "This is very good, Ms. Dixon considering your disease was at 100% burden." BOOM!!!
Disease... can we just chat about this word a little? Disease. I'm not sure what word is worse, cancer or disease. It seriously makes my skin crawl when I hear it. It's like I'm the sick and diseased cow in the herd. Like I'm going to give you the cooties if I lay a hand on you. Ugh!!! Awful. OK, thanks for letting me get that off my chest.
I was recently introduced to a blog (that I've already binge read) about a young woman with the same diagnosis. I was also put in contact with a young woman (with whom I've spoken to on the phone and emailed back and forth). Joined a CML support group. I follow several CML and leukemia pages and let me tell you, these have all been really great for me. To hear someone else's story and be able to relate to such raw emotion, feelings, thoughts, medication side effects, etc. When you hear them say exactly what you're feeling it's a major sigh of relief to realize you are not alone. That all of this is my new "normal" and it's going to be ok!
I've said it before, and I'll say it again a million times... I have THE best support system, but, they can only relate and help me along so much. To actually live it, and feel it is SO different. Thank you to those who have reached out to CML peeps and introducing me. It has helped more than you know. And to Dr. Mary who is still so wonderful to sound off on and always checking in. My guardian angel here on Earth! She saved my life!!!
So, at this point I will be staying on my Gleevec (thank God and science for Gleevec!!!) and just keep on, keepin' on. And as my cute Dory figurine sitting on the dash in my car, given to me by a dear friend, is always reminding me to JUST KEEP FRICKEN SWIMMING.
2016 is going to be the year I KICK CANCERS ASS!!! Happy New Year, my friends.
Be well,
Rhonda Kay
XOXO
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