It's true. Our first ginormous prayer has been answered. A perfect match. And he's a sibling...
It was Blake's 5th birthday and he chose pizza for dinner. I left for the 30 second drive to pick it up and I wasn't even to the end of my street when my phone rang. The transplant team was calling. Really? At 6:30 on a Tuesday evening? I always seem to get these phone calls when I'm out doing something...
"Hi Rhonda, it's Lucy. I'm calling in regards to the donor search. Jerry is a 4/6 match which, while not a perfect match, is still good. But, Greg is a 6/6 match! We have found a perfect match for you!! And it's a sibling match! That's SO amazing!!!" I burst into tears. She let me have a few minutes and pull myself together. "I hope these are happy tears!!" "Yes, they are. But this also means shit just got VERY REAL." "Yes. Yes it did."
I was in Rosati's parking lot for 15 minutes by the time we finished chatting. We hung up, I got out of the car, looked up to the clear blue sky, pointed and said "THANK YOU!!!!!!!"
I later called both brothers, my mom and dad, and obviously told Jason when I got home. Jason goes, "So did Greg say yes?" ummmmmmmmm.... "I guess I didn't ask! I told him! And I assumed!" hahaha!!
Things are very expedited. With a perfect match found, we can now proceed. I will be having a stem cell transplant within the next month. I have been put in contact with some people who have gone through this process. One woman was a fresh 60 days out when I phoned her... and I interrupted her having a glass of wine on her deck. LOL! Another woman is 7 years out. One gentleman a year out. A woman I chatted with a few hours ago is 5 years out. All have one underlying message - stay positive and keep the faith. Something I like to believe I'm doing great at so far. At this point, I'm done reaching out. Done talking about it. Done thinking about it. Done. It's time to write my own story.
I can't even tell you how many people have tagged me in posts, texted me, phoned me, messaged me, emailed me... stating they have registered to become a donor. I have lost count. You have no idea what that means to me. To think someone I encouraged to sign up could potentially get a call someday to give someone a second chance at life. THAT is amazing. And I thank you.
In case you need the link to register, click HERE!
The donor (😉) will be starting his process next week. I will be scheduled for several tests, including a bone marrow biopsy (lame) very soon. Then a date in which I will be admitted will be set. I am told to expect to be in the hospital for 4-6 weeks. This is going to take a village. Your continued prayers, positive juju, thoughts, whatever, is so appreciated. Now is when the real fighting happens. And I am more than ready to KICK THESE SHIT SHOWS!!!!!!!!!!
My Dad hilariously stated "When you start enjoying Captain and Coke's, we'll know it worked." Greg, here's to a lifetime of Captain and Coke's on me! It's the least I can do.
Be well. Enjoy this holiday weekend!
Rhonda Kay
xoxo
Friday, June 30, 2017
Monday, June 12, 2017
We Have A Plan...
I've fired up the laptop a few times before now to write this post. Stared at the blank white typing space and closed it back up. I guess I wasn't sure how to approach this one...
I'm still not sure how to approach this one...
There's no sugar coating it. There's no beating around the bush. There usually isn't when it comes to me anyways. I'm a straight shooter. So here goes...
I will be having a stem cell transplant.
Last week we learned that I do not, in fact, just have CML. In addition to CML which has mutated and decided to be extra lame, I also have MDS which stands for More Dumb Shitshow (smile. laugh. it's okay). MDS = Myelodysplastic Syndrome = blood forming cells in the bone marrow are damaged and are often responsible for low blood counts. Can be a "watch and monitor" thing or can escalate and turn into Acute Myeloid Leukemia. I have two shit shows. Double lame.
Right now the MDS is in the "watch and monitor" stage but there's really no question as to what the "plan" we've been waiting on has come to. So here we are. The whole transplant process has been expedited as we don't want to risk anything turning into anything else and giving me another hurdle to jump.
Bring it on. The sooner we get on this, the sooner I can begin to engraft, begin to bounce back, begin to heal, begin my new life free of cancer. These oral chemos I've been on for 20 months are treatments. A stem cell transplant is a potential cure. And because those words were muttered to me I am at total peace with this. I have to be. It took a week of major freaking out, reaching out to a stem cell transplant support group on Facebook, talking with a few respected, qualified individuals, and lots of prayers. But, I got there.
And I need you to get there too. I will have no part of poor me why me pity parties. Positive energy ONLY!!! Am I scared? Obviously! Cancer, leukemia, MDS, chemotherapy, stem cell transplant... them are fightin' words. They are big, scary, intimidating words.
I highly encourage y'all to educate yourselves on the process if you so desire. The whole process totally blows my mind. Here's a quick run down: be matched to a donor, donor does conditioning injections to boost their stem cell production, stem cells are harvested out intravenously and collected in a bag. I will be admitted into hospital, 5-7 days of traditional high dose chemo, transplant day (day 0) stem cells injected into me. The actual transplant itself is anti-climatic. Then it's recovery. The first 100 days are crucial. The first year is full of caution and one day at a time. Boy, did I just make that sound easy or what?!
This is the stuff you read about it. The stuff where you hear of somebody that knows somebody. The stuff you never think will happen to you. Well, congrats! You all are now that "somebody." And I am that "you".
All those times I've posted and shared about becoming a donor. Just a simple swab of your cheek can be someone's lifeline. I hope I have now convinced you to request a kit. You could be my lifesaver. Simply click HERE if you so wish to get on the registry. I thank you in advance. Truly.
I've never shared this before but I have a distant cousin, who's much younger, who I've never even met. We were diagnosed with two different leukemia's on the same day. I can't wait to meet this sweet 8 year old someday. Little does he know, he's my hero! He, himself, had a stem cell transplant earlier this year. What a warrior.
So where do we stand??? I am being closely monitored through blood work and weekly EKG's as I did change oral chemo meds to fight off the mutated CML while we wait for a donor. That's mainly what's happening right now. The search for a donor is on and expedited. My parents and brothers are being tested this week. If not matched they move on to the registry. That's right! Jerry has to get poked!!! BAHAHAHAHA!!!!!!! He asked if he could be put under for it. BAHAHAHAHA!!!!!!! If only Greg could do his poke!!!! Now THAT would be a fun blog post to write about. But, seriously, thank you brothers. Love ya dearly and here's to hoping we share the same DNA! Cheers!
Life goes on. I'm just carrying on with my life and trying to keep things calm and normal until the show begins. My motto is usually "go big or go home" but, I certainly didn't mean for that to happen for this shit show. That's for sure. Time to put the dukes up and BEAT THIS CRAP!!!
Thanks for praying and the positive energy.
Be well,
Rhonda Kay
XOXO
I'm still not sure how to approach this one...
There's no sugar coating it. There's no beating around the bush. There usually isn't when it comes to me anyways. I'm a straight shooter. So here goes...
I will be having a stem cell transplant.
Last week we learned that I do not, in fact, just have CML. In addition to CML which has mutated and decided to be extra lame, I also have MDS which stands for More Dumb Shitshow (smile. laugh. it's okay). MDS = Myelodysplastic Syndrome = blood forming cells in the bone marrow are damaged and are often responsible for low blood counts. Can be a "watch and monitor" thing or can escalate and turn into Acute Myeloid Leukemia. I have two shit shows. Double lame.
Right now the MDS is in the "watch and monitor" stage but there's really no question as to what the "plan" we've been waiting on has come to. So here we are. The whole transplant process has been expedited as we don't want to risk anything turning into anything else and giving me another hurdle to jump.
Bring it on. The sooner we get on this, the sooner I can begin to engraft, begin to bounce back, begin to heal, begin my new life free of cancer. These oral chemos I've been on for 20 months are treatments. A stem cell transplant is a potential cure. And because those words were muttered to me I am at total peace with this. I have to be. It took a week of major freaking out, reaching out to a stem cell transplant support group on Facebook, talking with a few respected, qualified individuals, and lots of prayers. But, I got there.
And I need you to get there too. I will have no part of poor me why me pity parties. Positive energy ONLY!!! Am I scared? Obviously! Cancer, leukemia, MDS, chemotherapy, stem cell transplant... them are fightin' words. They are big, scary, intimidating words.
I highly encourage y'all to educate yourselves on the process if you so desire. The whole process totally blows my mind. Here's a quick run down: be matched to a donor, donor does conditioning injections to boost their stem cell production, stem cells are harvested out intravenously and collected in a bag. I will be admitted into hospital, 5-7 days of traditional high dose chemo, transplant day (day 0) stem cells injected into me. The actual transplant itself is anti-climatic. Then it's recovery. The first 100 days are crucial. The first year is full of caution and one day at a time. Boy, did I just make that sound easy or what?!
This is the stuff you read about it. The stuff where you hear of somebody that knows somebody. The stuff you never think will happen to you. Well, congrats! You all are now that "somebody." And I am that "you".
All those times I've posted and shared about becoming a donor. Just a simple swab of your cheek can be someone's lifeline. I hope I have now convinced you to request a kit. You could be my lifesaver. Simply click HERE if you so wish to get on the registry. I thank you in advance. Truly.
I've never shared this before but I have a distant cousin, who's much younger, who I've never even met. We were diagnosed with two different leukemia's on the same day. I can't wait to meet this sweet 8 year old someday. Little does he know, he's my hero! He, himself, had a stem cell transplant earlier this year. What a warrior.
So where do we stand??? I am being closely monitored through blood work and weekly EKG's as I did change oral chemo meds to fight off the mutated CML while we wait for a donor. That's mainly what's happening right now. The search for a donor is on and expedited. My parents and brothers are being tested this week. If not matched they move on to the registry. That's right! Jerry has to get poked!!! BAHAHAHAHA!!!!!!! He asked if he could be put under for it. BAHAHAHAHA!!!!!!! If only Greg could do his poke!!!! Now THAT would be a fun blog post to write about. But, seriously, thank you brothers. Love ya dearly and here's to hoping we share the same DNA! Cheers!
Life goes on. I'm just carrying on with my life and trying to keep things calm and normal until the show begins. My motto is usually "go big or go home" but, I certainly didn't mean for that to happen for this shit show. That's for sure. Time to put the dukes up and BEAT THIS CRAP!!!
Thanks for praying and the positive energy.
Be well,
Rhonda Kay
XOXO
Wednesday, May 31, 2017
One. Day. At. A. Time.
First, let me start out by taking a few deep breaths. Thanks. I needed that after holding it for the last 6 weeks.
My alarm woke me at 4AM for my initial appointment at Northwestern. I was at the point of my cancer journey where a second opinion was weighing heavily on my mind. I was 18 months post diagnosis. After being SO close to the R word things started heading the wrong direction. Gene study (percent of leukemia cells in my blood) after gene study was indicating my disease was growing. Blood levels continued to stay bottomed out. The chemo I was on wasn't allowing good new blood cells to grow and now not keeping leukemia under control either. A chemo switch occurred and the gene study sky rocketed. *Rhonda goes into mass panic* I reached out to the National CML Society and asked for a CML specialist recommendation. They immediately responded and I ran with it. There I sat. In a new hospital. My Dad and Jason by my side (for every single appointment). My mom with Blake and Kendall (for every single appointment).
We answered so many questions. Walked them through every stepping stone since October 14, 2015. Throwing out dates, dosage amounts, medication changes, ER visits, sicknesses, what brought us to them, etc. Dr. Altman wanted and needed her own baseline of things. She ordered SO many blood tests and, as I expected, her own bone marrow biopsy. My 4th. The way the gene study was rising so rapidly, she was concerned that my disease developed a mutation in which the oral chemos are resistant to... leaving me with two options to treat my disease: one oral chemo (that comes with severe cardiovascular risks... so much that it was taken off the market per FDA, slapped with the black warning label and put back out) option or stem cell transplant.
She spent a little over an hour and a half with us. I liked her. While very matter of fact, she was thorough. In that first appointment she saw me laugh, cry, get scared, get mad... She kept saying she needed to piece together some missing info and come up with a plan. I offered her my backside and said "get drilling." Unfortunately, they were unable to do the biopsy that day. I was to return in a week to have that procedure. Now I had a week to think about it and dread it. Lame. I will admit it was the easiest one yet. I fully know what to expect and what to do. Jason offered me his phone so I could listen to music. I chose Joe Nichols, of course... I found myself skipping song after song because, well, Joe is just not bone marrow biopsy material!!! Hahahaha!!!! Instead, I found a good drinking song about rum and cranked it.
Dr: "OK, Rhonda. I'm done with the aspiration. Go ahead and flip over and lay there for a few minutes to apply pressure to the site. Do you want to see your core?"
Me: "Core? As in the needle??? HELL NO!!!"
Doc: "No, the core bone of the bone marrow!"
Me: "Bone??"
Doc: "Yes, the bone. We take the marrow of the bone and break off a sample of the bone for the biopsy. Are you sure this is your 4th procedure?"
Folks, I had no idea they break off bone! No wonder I waddle around for 2 weeks.
Dr: "OK, Rhonda. I'm done with the aspiration. Go ahead and flip over and lay there for a few minutes to apply pressure to the site. Do you want to see your core?"
Me: "Core? As in the needle??? HELL NO!!!"
Doc: "No, the core bone of the bone marrow!"
Me: "Bone??"
Doc: "Yes, the bone. We take the marrow of the bone and break off a sample of the bone for the biopsy. Are you sure this is your 4th procedure?"
Folks, I had no idea they break off bone! No wonder I waddle around for 2 weeks.
They wanted same day blood work to accompany the biopsy. So, after a brief rest when the procedure concluded, I sloooowwwly walked to the lab. My name was called and I followed in after a woman walking slowly with a walker - just my pace. Her jacket fell off her walker and I just stared at it. She looked at me like, "are you going to pick up my jacket for me, lady??" Like hell I was bending over fresh out of a biopsy. I quickly called for a nurse and asked her to grab the jacket for the both of us. LOL! Never judge a book by its cover. I'd bend over and pick up your jacket any day. Just not that day.
Results from Northwestern's initial blood work and gene study showed, yet again, another huge increase. It would be two weeks until I learned the results from the mutation analysis.
Time. So much time. 3-5 days for these results. A week for those results. Two weeks for these results. 2 months to see how a new medication responds. Years for clinical trials to learn new treatments. Nothings fast. And yet, the years fly by. It goes so fast. Hurry up and wait. The waiting is the worst part. I take one day at a time. It's literally all I can do some days. The unknown can make you crawl in a hole. I get many, many compliments on my strength and determination, but, I will be honest, some days I can't shake the blues and I feel like all I do is cry. It rarely lasts into a second day because I'll wake up and get real with myself. "SNAP OUT OF IT, GILLUND!!!" Those are the days I take a long, hot shower, do my hair, throw some makeup on, make myself presentable and look the world in the face. The second I fold, this crap wins. And that ain't happenin'.
5 days before my next appointment, my phone rang and it was the Chicago number I have now come to lose my stomach when it shows up. It was Northwestern. "Hi Rhonda, this is so and so from Dr. Adekola's office calling to set up a stem cell transplant consultation appointment." Who's Dr Adekola? What? Huh? Why? Is this the route we're going? Do we have results back that are leading to this? This poor woman was just a scheduler. An admin. And here I freaked out on her. I scheduled my appointment with this Dr I've never heard of and asked to have Dr. Altman call me right away. I deflated. Shit all of a sudden got real. Jason got home 9 hours after this phone call after being gone all week for work. I didn't even have it in me to tell him until very late that night. Even after we got the kids to sleep and we hung out for a bit watching Friday night television. That day was probably my darkest day through this journey.
Although it wasn't right away, Dr. Altman finally returned my call the next day on Saturday. She reassured me this was strictly a consultation appointment. To get the process started if this should be the route we were heading for as it can take several months to prepare for transplant. Although I appreciated the communication, it didn't ease the nerves.
Two weeks passed by and I found myself setting my alarm again for 4AM. Brutal. I don't do that hour. The 60 mile trek into beautiful downtown Chicago went on without one traffic hangup. Miracle. We would be learning so much at this appointment. I got poked as I always do before seeing the doc. I was called back and we were quickly told the mutation analysis report was not back yet. Lame. However, she did proceed to tell me the gene study taken from the bone marrow came back at 8%. We all just kind of looked at each other wondering if we were all hearing the same thing. This was a significant decrease of what we learned just 3 weeks prior. The doctor shrugged her shoulders and said there's a possibility I am suddenly responding to new medication...
She wanted to now do a gene study from the blood (again) to back up the marrow findings and confirm the positive news.
"Do you mind getting stuck one more time today?"
"No, Doc. You are searching for answers to this shit show so I'll do whatever you need."
"Shit show? Like we are the shit show? Like the poop emoji?" *gesturing to her nurse practitioner, herself and NW in general*
"No, CML is my shit show and you are officially on my shit show team now. Congratulations! You made it."
We all laughed after that. Gotta laugh to keep from cryin'.
I am on a low dose of my meds so she upped my dosage to optimum dosage in which I will start tomorrow. Back to the lab to get poked again. Sure, just go in the same arm. Why not? I hesitate on offering my right arm these days... they seem to struggle... and even after alllll these blood work pokes when you stick me and have to dig around to "get it started"... oh, hell no. Just NO. Jerry? You OK? You all know by now I have to give him crap... hahaha!!!
Back to the waiting area to wait for the stem cell transplant consultation appointment. We discussed the steps leading up to finding a match. Extensive family history questions. My brothers will be tested and if not matched they will go the bone marrow donor registry. We then were explained the actual procedure itself and post transplant expectations. We shook hands with this new team of brains and politely stated we hope to never see them again.
Is it lunchtime yet? Nope. Off to a different branch of hospital for an EKG (need these regularly thanks to the chemo pills). Finally, 6 hours later we leave. I have yet to take advantage of being a block of the magnificent mile. Couldn't care less, really. Get me out of the city and back to my sticks.
Fast forward two days. It's Friday evening. Friday going into a holiday weekend. Hanging out in the living room with my clan. Building Legos with my Blake, changing Kendall's bitty baby outfit for the 84th time, and Jason dozing off on the couch. My phone dings the email ding. This happens 100 times a day thanks to so much junk mail, but, I just happen to pick it up and look. It's an email from Dr. Altman and another one from her nurse practitioner... I open it to read the results of the blood work gene study taken just two days ago. Down to 2.6%. I quickly wake Jason to have him read it. He sits up, looks at me with this big smile and I just sat and cried. Then cried some more. Sweet Kendall came running over with a Kleenex and wiped away my tears. "Are you sad, mommy?" "No sweet girl, these are happy tears!" Our prayers are being heard. I'm all of a sudden responding to the meds?!?! Talk about something that makes you hit your knees and praise the good Lord. I can't even describe the relief.
I still wouldn't learn the mutation analysis results until next week.
*Rhonda steps up on her soap box*
In the beginning of this nightmare I was told several times "If you had to get cancer this is the one to get." Blah, Blah Blah. Please. Do me a favor and don't ever let those words come out of your mouth. Do that newly diagnosed patient a favor as well. NO CANCER IS THE RIGHT ONE TO GET. Period.
This cancer that's "the right one to get"... the one "I'm so lucky to get"... the one "you'll just have to take an oral chemo pill for the rest of your life and you'll live a full life" can mutate at any moment. Can grow resistant to these few oral chemo pills options. Leaving you with just one option. And even that option isn't a guarantee. Scary stuff. And this is just ONE type of ONE type of the millions of cancers out there.
I'm not sure if y'all know this but my oldest brother fought and killed melanoma 13 years ago. My parents are going through this cancer shit show stuff with their second child. Now THAT is a load of crap.
And please. Just please. Stop with the "he/she has lost her battle with cancer" I can't even deal with that especially when I read it in professional publications. That's some of the worst journalism right there. Awful. If you ask me, the cancer lost. It's dead. No longer spreading. No longer causing pain. I won't get churchy here but that person that passed on is a hero. The fight, the emotions, the pain they endured... A hero. The last thing they did was LOSE that battle.
*Thank You*
Then there's this evening. Just 3 hours ago. I laced up Blake's cleats for his first t-ball practice. I'm not sure who was more excited! While t-ball can be equivalent to watching paint dry, I was super excited for him to start this journey. The journey of sports. And then my phone rang. That Chicago number showed up. Really!? Of course you'd be calling me with mutation analysis results in the middle of t-ball practice. Dr. Altman informed me that I, indeed, show positive for a specific mutation... the mutation that the chemo I'm currently on should be resistant to and not respond to. While just 4 days ago I learned it drastically dropped the leukemia cells in my blood and we were rejoicing...
Once again, I was told I'm going against all normalities in treating this disease. And, now, this CML specialist, my second opinion, is scratching her head.
Say it with me - - - "SHIT SHOW" - - -
When I sat down to write this blog 5 days ago I actually went back to very beginning and read every single entry. Back to when I announced our first pregnancy. Back to when all I did was write about our children. When life seemed so simple... Now here I am, keeping my friends and family in the loop of this stupid cancer story. Lame.
In the meanwhile, I was told to sit tight for a few days. She was going reach out to Mr. CML in Seattle, reach out to another Mr. CML (I forgot where out of) and discuss me with her Northwestern colleagues. All of these peeps need to collaborate and come up with a plan of treatment. I thought we were able to breathe easy here for a bit after Friday's news, but, here we are again holding our breath. I am keeping the faith and asking for your prayers.
As always, thanks for reading and bearing with me on this one. Had a lot on my mind and as soon as I hit publish I'll remember 27 things I wanted to mention. Until next time.
Be well,
Rhonda Kay
XOXO
"Do you mind getting stuck one more time today?"
"No, Doc. You are searching for answers to this shit show so I'll do whatever you need."
"Shit show? Like we are the shit show? Like the poop emoji?" *gesturing to her nurse practitioner, herself and NW in general*
"No, CML is my shit show and you are officially on my shit show team now. Congratulations! You made it."
We all laughed after that. Gotta laugh to keep from cryin'.
I am on a low dose of my meds so she upped my dosage to optimum dosage in which I will start tomorrow. Back to the lab to get poked again. Sure, just go in the same arm. Why not? I hesitate on offering my right arm these days... they seem to struggle... and even after alllll these blood work pokes when you stick me and have to dig around to "get it started"... oh, hell no. Just NO. Jerry? You OK? You all know by now I have to give him crap... hahaha!!!
Back to the waiting area to wait for the stem cell transplant consultation appointment. We discussed the steps leading up to finding a match. Extensive family history questions. My brothers will be tested and if not matched they will go the bone marrow donor registry. We then were explained the actual procedure itself and post transplant expectations. We shook hands with this new team of brains and politely stated we hope to never see them again.
Is it lunchtime yet? Nope. Off to a different branch of hospital for an EKG (need these regularly thanks to the chemo pills). Finally, 6 hours later we leave. I have yet to take advantage of being a block of the magnificent mile. Couldn't care less, really. Get me out of the city and back to my sticks.
Fast forward two days. It's Friday evening. Friday going into a holiday weekend. Hanging out in the living room with my clan. Building Legos with my Blake, changing Kendall's bitty baby outfit for the 84th time, and Jason dozing off on the couch. My phone dings the email ding. This happens 100 times a day thanks to so much junk mail, but, I just happen to pick it up and look. It's an email from Dr. Altman and another one from her nurse practitioner... I open it to read the results of the blood work gene study taken just two days ago. Down to 2.6%. I quickly wake Jason to have him read it. He sits up, looks at me with this big smile and I just sat and cried. Then cried some more. Sweet Kendall came running over with a Kleenex and wiped away my tears. "Are you sad, mommy?" "No sweet girl, these are happy tears!" Our prayers are being heard. I'm all of a sudden responding to the meds?!?! Talk about something that makes you hit your knees and praise the good Lord. I can't even describe the relief.
I still wouldn't learn the mutation analysis results until next week.
*Rhonda steps up on her soap box*
In the beginning of this nightmare I was told several times "If you had to get cancer this is the one to get." Blah, Blah Blah. Please. Do me a favor and don't ever let those words come out of your mouth. Do that newly diagnosed patient a favor as well. NO CANCER IS THE RIGHT ONE TO GET. Period.
This cancer that's "the right one to get"... the one "I'm so lucky to get"... the one "you'll just have to take an oral chemo pill for the rest of your life and you'll live a full life" can mutate at any moment. Can grow resistant to these few oral chemo pills options. Leaving you with just one option. And even that option isn't a guarantee. Scary stuff. And this is just ONE type of ONE type of the millions of cancers out there.
I'm not sure if y'all know this but my oldest brother fought and killed melanoma 13 years ago. My parents are going through this cancer shit show stuff with their second child. Now THAT is a load of crap.
And please. Just please. Stop with the "he/she has lost her battle with cancer" I can't even deal with that especially when I read it in professional publications. That's some of the worst journalism right there. Awful. If you ask me, the cancer lost. It's dead. No longer spreading. No longer causing pain. I won't get churchy here but that person that passed on is a hero. The fight, the emotions, the pain they endured... A hero. The last thing they did was LOSE that battle.
*Thank You*
Then there's this evening. Just 3 hours ago. I laced up Blake's cleats for his first t-ball practice. I'm not sure who was more excited! While t-ball can be equivalent to watching paint dry, I was super excited for him to start this journey. The journey of sports. And then my phone rang. That Chicago number showed up. Really!? Of course you'd be calling me with mutation analysis results in the middle of t-ball practice. Dr. Altman informed me that I, indeed, show positive for a specific mutation... the mutation that the chemo I'm currently on should be resistant to and not respond to. While just 4 days ago I learned it drastically dropped the leukemia cells in my blood and we were rejoicing...
Once again, I was told I'm going against all normalities in treating this disease. And, now, this CML specialist, my second opinion, is scratching her head.
Say it with me - - - "SHIT SHOW" - - -
When I sat down to write this blog 5 days ago I actually went back to very beginning and read every single entry. Back to when I announced our first pregnancy. Back to when all I did was write about our children. When life seemed so simple... Now here I am, keeping my friends and family in the loop of this stupid cancer story. Lame.
In the meanwhile, I was told to sit tight for a few days. She was going reach out to Mr. CML in Seattle, reach out to another Mr. CML (I forgot where out of) and discuss me with her Northwestern colleagues. All of these peeps need to collaborate and come up with a plan of treatment. I thought we were able to breathe easy here for a bit after Friday's news, but, here we are again holding our breath. I am keeping the faith and asking for your prayers.
As always, thanks for reading and bearing with me on this one. Had a lot on my mind and as soon as I hit publish I'll remember 27 things I wanted to mention. Until next time.
Be well,
Rhonda Kay
XOXO
Tuesday, May 2, 2017
I'm Just Going to Keep Swimming...
9/4/81. Rhonda Dixon 9/4/81. Rhonda Dixon 9/4/81. 9/4/81.
If I had a dollar for every time I've muttered my verification information, I could buy a penthouse suite in Gulf Shores, Alabama. Sit on my balcony every morning, lost in a good book, the crashing of the waves on the shore as my background music, glance up once in a while to catch a dolphin surface close to shore, feel the warm sun on my face... Sorry, you all lost me there for a minute. I was back to last week where this was my reality every morning and evening. Who would have thought Alabama could be so awesome? Just beautiful! And I finally saw for myself a red dirt road. Like the song. It's a real thing.
A day spent in Nashville on the tail end of our trip as we passed through on our way home was the perfect ending. Such a blast. And, no, I didn't see Keith this time either!
This vacation could not have come at a better time. Let's just say my shit show has been a shit head and like I said to Jason shortly after we pulled away from our home, "I want and need NO mention or talk of the C word, shit show, medical records, doctors, hospitals (you catch my drift)." He wholeheartedly agreed... and we both obliged... until Friday as we were halfway to Nashville on our trek home and Northwestern called to have me sign some paperwork they were going to email me for consent to have Loyola release some medical records to them... POW! And just like that, a punch to the gut and slap across the face - back to reality.
Northwestern, you ask?! Yes, Northwestern. Time for a fresh set of eyes and brains to look me over.
Back in March, while being tourists in our own windy city, checking out the Shedd Aquarium, that Loyola number showed up on my phone. Dr. Nand informed me my gene study, yet again, went up and he was making a chemo switch. My blood work levels remained very low, and now the gene study (% of leukemia cells in my blood) are increasing. In you and I terms: Gleevec was hindering the growth of good, new blood and now not keeping leukemia under control. It was no longer working.
The fact that I have another target treatment to go to is incredible in the blood cancer world. The fact that I need to go to another target treatment is somewhat scary as I only have very few options to blow through...
I began the new chemo the following week. I swallowed my first dose and Jason and I just stared at each other. As if I was going to do some circus act or something - hahahaha!!! Three days went by with not one sign of a new chemo in my body. I felt fine! Until very early Sunday morning I woke up with the most excruciating bone/muscle pain and the worst headache I have ever felt. We contemplated a trip to the emergency room but settled on a dose of Tylenol (the only thing I can take) to see what that did and, by golly, it subsided the pain well enough for me to get back to sleep. My trusty Tylenol carried me though the next week of terrible bone pain. A few other side effects come and go but that bone pain is for the birds.
Then a couple weeks later I feel myself coming down with a cold. Most likely the one my children so graciously shared with me. Eventually, that turned into high fevers, a trip to the ER, "Its just a virus let it run its course", a week goes by and still running 104 fevers, back to dr, get treated for pneumonia, a few days of antibiotics and finally on the mend. That "virus" hung out for 3 weeks. It ran its course, all right!!
I had my "new chemo one month checkup" somewhere in all of that. Dr. Nand was very encouraged by blood work. Since day 1 most blood work levels come back highlighted which means "not in normal range." This blood work had very little highlighting going on. He was confident this new chemo was the ticket. A gene study was done and those results were not encouraging. But, because of the chemo switch so recently, he admitted he did a gene study prematurely and wouldn't do another one for a few months. The Tasigna needs to run its course for a few months and he will test again.
It's nothing against Loyola Medicine, Dr. Nand, a nurse, a staff member. It's the fact I'm dealing with cancer here. A chronic cancer, at that. One in which I will deal with for the rest of my life even after I hear the word REMISSION. While I live for the day to hear that word, it certainly isn't my tell all. I need peace of mind. Period. That's all thats to it. So therefore, I reached out to the National CML Society and was recommended a CML specialist at another fantastic hospital here in Chicago. I will see her tomorrow for the first time. I pray she agrees that we are on the right course!!! I have a few other doctors and routes that I can take in my back pocket. But, we'll start here for now.
This hospital happens to be a block off the Magnificent Mile. Oh, darn! If Jason and my dad think they are getting out of a shopping spree they are wrong - hahaha!! Maywood, IL (home of Loyola), well, lets just say, can't get back to my neck of the woods fast enough.
Hadn't blogged in 3 months. Just wanted to update y'all. I would appreciate your prayers and positive vibes as I turn to a new set of brains tomorrow. I'd say its about time I finally KICK CANCERS ASS!!!!!!! I'll update soon.
Be well!
Rhonda Kay
xoxo
If I had a dollar for every time I've muttered my verification information, I could buy a penthouse suite in Gulf Shores, Alabama. Sit on my balcony every morning, lost in a good book, the crashing of the waves on the shore as my background music, glance up once in a while to catch a dolphin surface close to shore, feel the warm sun on my face... Sorry, you all lost me there for a minute. I was back to last week where this was my reality every morning and evening. Who would have thought Alabama could be so awesome? Just beautiful! And I finally saw for myself a red dirt road. Like the song. It's a real thing.
A day spent in Nashville on the tail end of our trip as we passed through on our way home was the perfect ending. Such a blast. And, no, I didn't see Keith this time either!
This vacation could not have come at a better time. Let's just say my shit show has been a shit head and like I said to Jason shortly after we pulled away from our home, "I want and need NO mention or talk of the C word, shit show, medical records, doctors, hospitals (you catch my drift)." He wholeheartedly agreed... and we both obliged... until Friday as we were halfway to Nashville on our trek home and Northwestern called to have me sign some paperwork they were going to email me for consent to have Loyola release some medical records to them... POW! And just like that, a punch to the gut and slap across the face - back to reality.
Northwestern, you ask?! Yes, Northwestern. Time for a fresh set of eyes and brains to look me over.
Back in March, while being tourists in our own windy city, checking out the Shedd Aquarium, that Loyola number showed up on my phone. Dr. Nand informed me my gene study, yet again, went up and he was making a chemo switch. My blood work levels remained very low, and now the gene study (% of leukemia cells in my blood) are increasing. In you and I terms: Gleevec was hindering the growth of good, new blood and now not keeping leukemia under control. It was no longer working.
The fact that I have another target treatment to go to is incredible in the blood cancer world. The fact that I need to go to another target treatment is somewhat scary as I only have very few options to blow through...
I began the new chemo the following week. I swallowed my first dose and Jason and I just stared at each other. As if I was going to do some circus act or something - hahahaha!!! Three days went by with not one sign of a new chemo in my body. I felt fine! Until very early Sunday morning I woke up with the most excruciating bone/muscle pain and the worst headache I have ever felt. We contemplated a trip to the emergency room but settled on a dose of Tylenol (the only thing I can take) to see what that did and, by golly, it subsided the pain well enough for me to get back to sleep. My trusty Tylenol carried me though the next week of terrible bone pain. A few other side effects come and go but that bone pain is for the birds.
Then a couple weeks later I feel myself coming down with a cold. Most likely the one my children so graciously shared with me. Eventually, that turned into high fevers, a trip to the ER, "Its just a virus let it run its course", a week goes by and still running 104 fevers, back to dr, get treated for pneumonia, a few days of antibiotics and finally on the mend. That "virus" hung out for 3 weeks. It ran its course, all right!!
I had my "new chemo one month checkup" somewhere in all of that. Dr. Nand was very encouraged by blood work. Since day 1 most blood work levels come back highlighted which means "not in normal range." This blood work had very little highlighting going on. He was confident this new chemo was the ticket. A gene study was done and those results were not encouraging. But, because of the chemo switch so recently, he admitted he did a gene study prematurely and wouldn't do another one for a few months. The Tasigna needs to run its course for a few months and he will test again.
It's nothing against Loyola Medicine, Dr. Nand, a nurse, a staff member. It's the fact I'm dealing with cancer here. A chronic cancer, at that. One in which I will deal with for the rest of my life even after I hear the word REMISSION. While I live for the day to hear that word, it certainly isn't my tell all. I need peace of mind. Period. That's all thats to it. So therefore, I reached out to the National CML Society and was recommended a CML specialist at another fantastic hospital here in Chicago. I will see her tomorrow for the first time. I pray she agrees that we are on the right course!!! I have a few other doctors and routes that I can take in my back pocket. But, we'll start here for now.
This hospital happens to be a block off the Magnificent Mile. Oh, darn! If Jason and my dad think they are getting out of a shopping spree they are wrong - hahaha!! Maywood, IL (home of Loyola), well, lets just say, can't get back to my neck of the woods fast enough.
Hadn't blogged in 3 months. Just wanted to update y'all. I would appreciate your prayers and positive vibes as I turn to a new set of brains tomorrow. I'd say its about time I finally KICK CANCERS ASS!!!!!!! I'll update soon.
Be well!
Rhonda Kay
xoxo
Wednesday, February 1, 2017
Drilling Bones and Keeping the Faith
Lying face down, on my belly. My forehead resting in the "v" of my bent arm. The pushing, the prodding, the feeling around with his hand. More pushing and prodding. Finally, he zeroes in on a spot and pushes firmly. A huge squeeze of the husbands hand, and a big inhale waiting for the pinch...
"I'm just marking my spot with a marker, Ms. Dixon."
*Huge exhale* Son of a.....!!!
"Oh, okay doc"
This time he gives me fair warning that the first numbing shot is coming. The worst part of the whole bone marrow biopsy, in my opinion. You'd think the flabby upper part of the butt/lower back hip wouldn't hurt. Wrong. That burn is like nothing else. Its enough to make you silently mutter cuss words in a Catholic hospital. He goes in for a second numbing shot and although I most likely can't feel it, when he asks if I feel a burn you better believe I say yes. Give me all the Novocain, doc!!!!! Now for the auger... Jerry, are you still with me??? LOL!! My oldest brother is probably passed out reading thus far... Nah, the auger is the easy part. Auger down, doc. Have at it. Drill those bones!! Now for the marrow aspiration. While I only feel pressure and pushing, it's awful. I am tensed up and back to squeezing Jason's hand until its blue. The lab nurse is massaging my legs and before I know it, it's over. That, my friends, is a bone marrow biopsy. Nothing a few Tylenol's over the next few days can't take the edge off.
I told you I'd write about it, so there you go. I haven't had one since June and I hope there's not another one in my near future. Luckily, they've come a way with blood cancer and SO much can be monitored through a simple poke for bloodwork. Which, by the way, is holding steady. All levels remain LOW but have gone up slightly which is what we want. What we don't want is my gene study (% of leukemia cells in my blood) to go up and this most recent one just before Christmas increased 1%. What does that mean? *shrugs shoulders* Doc said to continue treatment as is and he'll see me in February.
Do I stress about it? Sure. Does it keep me up at night? Perhaps. But, I have my meltdown and move on with my life. I can't focus on it. The unknown of this whole shit show is enough to make you want to crawl into a hole. One day at a time is the best I can do. And yes. I just called it a shit show. It's the best I can come up with. I'm still Rhonda... just with a side of shit show.
I recently started the generic version of my chemo thanks to insurance calling the shots on that. Instead of $14,182 a month, it now costs $22,000 for 3 months. What a steal! I live for a good bargain. Some side effects have reappeared after having them finally subsiding. Achy, sore muscles and almost immediate nausea and fatigue setting in after taking it. Getting in and out of the car/bed is slow some days. When I tell you I'm sore from marathon training, I'm pulling your leg!!! ;)
I drafted this blog entry two weeks ago now and I've come back to it at least a half dozen times. I'm struggling to find the words... Last week a friend posted: "God, I can't say it in words... Can you please just listen through my heart." (Unknown) Love it. Just love it. It's what I needed. It's what a lot of us needed last week. Two weeks ago we mourned with some dear friends after the passing of their 12 year old nephew. We struggled to understand why. Again, I just had no words. Sitting through his funeral service was tough. Stories were shared. We all laughed, we all cried. But then the last reading/message was delivered by their pastor with such meaning. I was deeply moved by it. His journey has not ended, just this chapter. A new chapter begins with Jesus. In a time of such hurt and sorrow, they find comfort knowing hes walking along side our Lord. This isn't anything new to me, I just had never heard it delivered in such a way. So to that pastor, thank you! It was the reminder I needed. Just give it to God and never lose faith. Never lose hope. Hope anchors the soul.
I'm trying not to be too "churchy" but at the same time, I'm just speaking from the heart. After all, God gave us a great reason to smile and rejoice during this grief-stricken time. Another dear friend welcomed a beautiful baby boy into the world. The circle of life.
Kind of a blue entry. Perhaps its reflecting my mood during this gray, dreary time of year. Some sunshine would be very welcomed. And I'm ready for some 70 degree weather. Am I asking too much? Hopefully, that crazy groundhog delivers good news tomorrow.
We registered Blake for kindergarten yesterday. Kendall's preschool registration is next week. Another two months has flown by and I'm off to the doc again soon. Time just keeps ticking away!!! Crazy!
Have a great week! Chat soon.
Be well,
Rhonda Kay
XOXO
"I'm just marking my spot with a marker, Ms. Dixon."
*Huge exhale* Son of a.....!!!
"Oh, okay doc"
This time he gives me fair warning that the first numbing shot is coming. The worst part of the whole bone marrow biopsy, in my opinion. You'd think the flabby upper part of the butt/lower back hip wouldn't hurt. Wrong. That burn is like nothing else. Its enough to make you silently mutter cuss words in a Catholic hospital. He goes in for a second numbing shot and although I most likely can't feel it, when he asks if I feel a burn you better believe I say yes. Give me all the Novocain, doc!!!!! Now for the auger... Jerry, are you still with me??? LOL!! My oldest brother is probably passed out reading thus far... Nah, the auger is the easy part. Auger down, doc. Have at it. Drill those bones!! Now for the marrow aspiration. While I only feel pressure and pushing, it's awful. I am tensed up and back to squeezing Jason's hand until its blue. The lab nurse is massaging my legs and before I know it, it's over. That, my friends, is a bone marrow biopsy. Nothing a few Tylenol's over the next few days can't take the edge off.
I told you I'd write about it, so there you go. I haven't had one since June and I hope there's not another one in my near future. Luckily, they've come a way with blood cancer and SO much can be monitored through a simple poke for bloodwork. Which, by the way, is holding steady. All levels remain LOW but have gone up slightly which is what we want. What we don't want is my gene study (% of leukemia cells in my blood) to go up and this most recent one just before Christmas increased 1%. What does that mean? *shrugs shoulders* Doc said to continue treatment as is and he'll see me in February.
Do I stress about it? Sure. Does it keep me up at night? Perhaps. But, I have my meltdown and move on with my life. I can't focus on it. The unknown of this whole shit show is enough to make you want to crawl into a hole. One day at a time is the best I can do. And yes. I just called it a shit show. It's the best I can come up with. I'm still Rhonda... just with a side of shit show.
I recently started the generic version of my chemo thanks to insurance calling the shots on that. Instead of $14,182 a month, it now costs $22,000 for 3 months. What a steal! I live for a good bargain. Some side effects have reappeared after having them finally subsiding. Achy, sore muscles and almost immediate nausea and fatigue setting in after taking it. Getting in and out of the car/bed is slow some days. When I tell you I'm sore from marathon training, I'm pulling your leg!!! ;)
I drafted this blog entry two weeks ago now and I've come back to it at least a half dozen times. I'm struggling to find the words... Last week a friend posted: "God, I can't say it in words... Can you please just listen through my heart." (Unknown) Love it. Just love it. It's what I needed. It's what a lot of us needed last week. Two weeks ago we mourned with some dear friends after the passing of their 12 year old nephew. We struggled to understand why. Again, I just had no words. Sitting through his funeral service was tough. Stories were shared. We all laughed, we all cried. But then the last reading/message was delivered by their pastor with such meaning. I was deeply moved by it. His journey has not ended, just this chapter. A new chapter begins with Jesus. In a time of such hurt and sorrow, they find comfort knowing hes walking along side our Lord. This isn't anything new to me, I just had never heard it delivered in such a way. So to that pastor, thank you! It was the reminder I needed. Just give it to God and never lose faith. Never lose hope. Hope anchors the soul.
I'm trying not to be too "churchy" but at the same time, I'm just speaking from the heart. After all, God gave us a great reason to smile and rejoice during this grief-stricken time. Another dear friend welcomed a beautiful baby boy into the world. The circle of life.
Kind of a blue entry. Perhaps its reflecting my mood during this gray, dreary time of year. Some sunshine would be very welcomed. And I'm ready for some 70 degree weather. Am I asking too much? Hopefully, that crazy groundhog delivers good news tomorrow.
We registered Blake for kindergarten yesterday. Kendall's preschool registration is next week. Another two months has flown by and I'm off to the doc again soon. Time just keeps ticking away!!! Crazy!
Have a great week! Chat soon.
Be well,
Rhonda Kay
XOXO
Sunday, November 6, 2016
Still swimming (can't come up with anything clever - HA!)
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
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
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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