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