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.

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

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