Let’s Talk Body

We come to this Earth with one body, one vessel.  It’s wonderful what the human body is truly capable of and you’re just living life day in and day out doing your normal daily activities.  Most of us take for granted how amazing the human body is and at times even mistreat it.  For me, I took pride in working out and trying to be healthy but I could have done more.  Then WAM!  CANCER.  The aches and pains, nausea, vomiting, debilitating headaches, constipation, diarrhea, no or low energy levels, and the physical changes I see happening constantly.  Well now, I know I have a body.  I just wish I had enjoyed it more when I was healthier.

Hiking in Costa Rica.

Left; Ziplining in the Cloud Forest of Monteverde, Costa Rica. Right; Enjoying an early Yoga class at our amazing resort, Buena Vista Surf Club, Nicaragua. Bottom:  Walking around our house this year.  I miss my body and what it could do.  But I’m working on it!  Every day I hope to get stronger.

This leads me to why I’m late in writing this blog which I apologize greatly to myself and readers.  My most recent blog, 45 Hours, went into detail about an unexpected health scare I had just last month.

In bed after my 2nd episode.  Look at those bags under my eyes!  Also, why do I look 8 yrs. old?

Since then, I’ve had two more episodes that were very similar to that one and no one knows what’s really going on.  Lately it feels like I take 2 steps forward and 10 back.  I’m almost at 10 months post transplant.  Why is this happening?  My poor parents had to cancel, once again, Dr. appointments in Ocala to stay with me this past week.  I know my life is hard, but I don’t pretend to think theirs is not.  I’ll be glad when I can finally help out more and not get sick every other week!

Now that you’re somewhat caught up with why I’ve been M.I.A., I’d like to pick up where we left off with the cancer reality segments.  Open Your Eyes got you up to May 1, 2014.  As mentioned on a regular basis, I never want my readers to feel the need of slitting their wrists and pouring lemon juice in them from reading my blogs.  This is why I’ve been doing a few of these here and there.

May 2014

They officially started looked for donor matches.  They had found 19 preliminary matches.  In order to survive, I must have a bone marrow transplant.  If I do not receive one, my life expectancy is 1-2 years.  To refresh your memory and give you more insight, you can read one of my favorite blogs I’ve done thus far, Superwoman Cries Too.  May 28th I go in for my doctor’s appointment.  This is when I’m told that none of the 19 will work.  I need a transplant but I have no donor and time is of the essence.  The next option we discuss is using my brother who is only a half match as my donor.  The doctor’s had already told me that if they had to go this route, the chance of relapse is much higher.  The odds were not in my favor.  My parents and I got into the car to drive home.  My head was spinning.  It was all just too much.  I finally broke down and lost it.  It was like Niagara Falls.  Hey, I made it further than I thought I would.  I didn’t lose it in the Dr.’s office and it was a good 10 minute car ride before I couldn’t hold it in any longer.  I felt like all hope was gone and I couldn’t understand why God was doing this.  I hated crying this hard in front of my mom and dad.  I always want to be strong for them, but I just couldn’t this time.

Can’t I just catch a break

Crazy thing about life…it doesn’t stop.  Certainly feels like it should at times, but that’s one thing that is certain.  The passing of time.  Until the Zombie Apocalypse or Armageddon.
 

After realizing that I wasn’t going to die of fright, shock, or a broken heart, it was time to go to my hometown in Virginia where they were holding a fundraiser in my honor.  Such an amazing and unforgettable experience.  Dancing in the Rain goes into more detail and has pictures from that trip.  It also talks about the next thing that happens in my so called life.  June 11th at my doctor’s office, a day after getting back home from our lovely trip, I was delivered more unfortunate news.  “You’ve relapsed and your leukemia has come back taking over 30% of your body.”  It felt like I was getting my cancer diagnosis all over again.  Turned out the special $10,000/month pill (Sprycell) wasn’t working for me and did not keep the leukemia at bay.  This is exactly why a transplant is so crucial with ALL PH+.

So here we are.  No donor and my cancer has come back.  I have to go back into the hospital for a third round of chemo.  I’m there from June 13th-30th.  Any cancer patient can attest to the following. Your memory is just shot.  I don’t know exactly what it is.  The chemo, all the medications, narcotics, pain, fear, probably a combination of all the above.  But what I do remember the most about this stay is my picc line creating blood clots in my right arm.  Picc lines alone are incredibly uncomfortable but are a necessary evil to get all of the fluids, chemo, and medicines in your body.  This particular picc line didn’t feel right from the time it was inserted.  I knew something was wrong right off the bat and I had a little experience in the matter seeing as it was my third one.  To have my arm swell up to the size of the Hulk’s arm was incredibly painful.  I kept telling my nurses that something wasn’t right.  I’ve said it plenty before, I love my BMTU nurses but it took some convincing and a lot of tears for them to finally take me serious on this one.  Yep, turns out I was right and I had several clots.  I can’t even begin to describe that pain.  Did you know that having a blood clot is life threatening?  I didn’t before having one myself, but they are certainly something that should be taken seriously.  After having clots were confirmed, I was given blood thinners and my Hulk arm slowly went back down to normal.

Give me that baby blood

At some point during June, we had heard of another type of transplant called cord blood.  We talked it over with my Dr. and turns out they had been looking into that as well.  Even though they don’t do many of those and that type of transplant is not only riskier but also harder on the body and has a longer healing process.  Guess what??!  They found me some baby blood that was a perfect match for me and since we’ve got nothing to lose at this point (I’m pretty sure I was a guinea pig) they decided to do a double cord blood transplant on me.  For all you momma’s out there – PLEASE donate your babies umbilical cord blood.  It could save lives and it’s completely free for you!  What is there to think about?  I can’t stress this enough.  Please help me spread the word about the importance of this.

“Hi, I’m Tom.”

This is adorable and special 10 year old Michele.

June 18th I have my port put into my body which is still there to this day.  May be there for another 4 years.  So much for being a stomach sleeper or right side sleeper for that matter.  Horse playing is out of the question when one has a port.  Just ask my husband about that one.  Now due to my memory loss that I’ve gone over quite a bit, I only remember bits and pieces.  So I’ve been told that during this round of chemo I was on a lot of steroids and was obstinate, stubborn, angry, and had trouble sleeping.  If you haven’t seen the movie, 50 First Dates, it’s a must watch to understand the gravity of our situation.  The memory thing and never knowing what kind of Michele you’re going to get day to day can be very frustrating. Near the end of my hospital stay, they had started me on another TKI called Ponatinib.  It has a very confusing definition but the main thing you need to know is that it is suppose to be a cancer cell blocker.  Like the Sprycell I was on that didn’t work and my cancer came back.  Uh oh.  Guess they don’t work for everyone.  We were hoping Ponatinib would do a better job.  June 30, 2014 I am released and this is where we will pick up next time.

I Love Lucy

Let’s fast forward to the here and now.  We’ll end with some bittersweet news today.  Dr. Khaled gave me the permission to have my cat back a few months early.

My Dr. Khaled & me.

This was discussed during one of our last appointments with him.  That’s right.  He’s moving to Tennessee.  Something about a career change.  But all I can selfishly think, I’m losing the Dr. that saved my life.  Now let us not make his head larger than it already is.  He had help from his amazing medical staff both in the hospital and at the clinic.  To know this man is to know laughter.  He always announced his arrival and had a song he would play just for me.  Some of the questions I would ask him would make him actually blush and laugh his head off.  As bad as my memory is, I will remember those times.  It feels like I’m losing a part of my family.  I am sad to see him go but I am glad he was here to save me.

That’s the bitter part.  The sweet part – I got my cat back!  I have no babies, I may never be able to have children.  So for now, I am a cat mom.  And I’m alright with that at this moment.  After a very long 9 months and all of the hospital stays I had to go through and not seeing my cat, I was getting Lucy back!  Scott & I are

Amazing kitty foster parents!  We love you guys 🙂

forever grateful to her foster parents, Adam & Brittney Bradford.  They not only took care of her, fed her, and kept her alive which were my only expectations and hopes.  But they loved her too.  Because of this, I know it couldn’t have been easy for them to give her back.  This is yet another reason why cancer is so horrible. It can affect so many people around you.  Lucy came back to us happy, well fed, and ready to play.  (Even though she’s pushing 11 years old in human years.  Get it gurl.)

Shrine of Lucy

Left; Car ride home.  Right; Mobile grooming services, how cool is that? Lucy’s home…

We love the new kitty condo.  Shout out to Greg Toney who made it special for Lucy. It’s perfect & she absolutely loves it!  She also loves getting high off of catnip which is spread all over her condo.  Who’s got two thumbs and wins Mother of the Year? This girl!

Look at that face.  So adorable.