Myeloma Newbies, READ ME!

So, an amazing thing happened when I went back to Arkansas for my first transplant.  I was sitting in the waiting room to get my line put back in my chest when I noticed another young female with a CVL (central line) bandage.  I see very few people my age, so I had to find out if she was there for the same reason I was.  It turns out that her name is Angela, and she has Multiple Myeloma, too.  Yay for finding another person my age, but boo she has myeloma too…and a family with young kids.  Just.Like.Me.

That isn’t really the thing that is so amazing, though.  When I introduced myself she immediately started asking questions about who my doctor is, where are we staying, how was my first round of chemo, etc.  When I told her the name of the apartment complex that we stay while in Arkansas, she immediately said, “Wait, are you Beating the Monster?  Did you go to Costa Rica?”  I’m sure my jaw dropped at that point, but I replied with a, “You know my blog?!”  And here I thought my followers were just family and friends!  It’s a little humbling/embarrassing/super cool..etc.  I told her that I was “Beating the Monster;)” and she said that she started reading all the blogs she could get her hands on that dealt with MIRT, Dr. Barlogie and UAMS.  Amazing blogs like Nicks Myeloma Blog.  If you want to read some amazing stuff, visit Nick.  He’s got way more experience and way more myeloma time under his belt.  Yet another person that knows that remission of this stupid cancer leads to cure, and that if we could get more people to MIRT we would be saving more lives.

I was fortunate enough that my Oklahoma City oncologist sent me immediately to Arkansas and Dr. Barlogie.  I have learned, however, that I am in a VERY VERY small minority.  Realizing that people like Angela, who I don’t believe was sent here by her local doctor, end up going to the Myeloma Institute for Research and Therapy because they read former and current patient’s blogs really hit home with me.  And here’s the thing:  I KNOW there will be many people at this point that say, “What??  She made that kind of decision based on PATIENT’S BLOGS?  How irresponsible!”  The answer is an ear-splitting, arms raised to the sky, emphatic “HECK YES SHE DID,” Why?  Because when 90% of the cancer community says that myeloma can’t be cured, that the survival rate is anywhere from 5-10 years, and you get to read blogs by myeloma survivors that have been in remission for 15 years plus, it tends to wake you up from the shock that’s left over in your brain.  It’s that shock of a doctor telling you that yes, you have a TERMINAL cancer called Multiple Myeloma, and all they can do is try to improve/extend the rest of your short life.  Screw that…I’ll go for the cure.

So instead of telling all you about the horribleness that was my first transplant, I think the more responsible thing to do is direct this post to all the Myeloma newbies out there.  I really hope you find this post because there is so much to know right off the bat.

1.  Don’t believe, for one second, that you are stuck feeling the way you do right now.  Most people that are diagnosed with this disease found it because of broken ribs, sternums and spines.  Those seem to be the most prevalent, although I did hear about a lady that broke her arm in 3 places just buckling her toddler into a car seat.  I also met a patient that broke his femur because he tripped.  Get to Dr. Barlogie.  My pain improved drastically, and very quickly (I had 3 broken ribs and a gigantic tumor in my sternum that caused a break there).

2.  Get in touch with a doctor/team member at MIRT BEFORE you have any procedures like chemo or radiation.  Take the bull by the horns, if you have to.  Don’t wait for your doctor to refer you.  I was very lucky here.  The day after my first contact with a MIRT team member I was scheduled in OKC for radiation to my plasmacytoma (tumor in my sternum).  I am so grateful they called when they did.  If I had gone ahead with that radiation two very important things would NOT have happened.  1) Apheresis (stem cell collection) would not have been as successful and it would have taken possibly weeks longer and 2) I would not have been able to be on the Total Therapy 4 protocol.  I think the stem cell collection part is probably the most important.  You need those cells by the millions for your transplants.  Those babies will save your life.

**(If you get there after you have already had radiation or another chemo, don’t fret.  I’ve met so many patient’s that are on TT5 and 6 and are doing GREAT.  Apheresis is just so much harder for them.)

3.  This is my opinion, but if your doctor says the treatment in Arkansas is too aggressive, get a new doctor.  Too aggressive?  This is your life.  Can you give up 6 months to a year to gain 40 more?  Don’t let a doctor tell you how much to value your life.  That’s your decision.  Again, I’m fortunate to have an AWESOME local that told me to get my hiney to Dr. Barlogie, but so many of my new friends were not.  They found out about MIRT on their own.  By reading blogs.  Now their 5 to 7 years to live has become “CURE”.

4.  If you are still skeptical, do your own research.  Everything you need to know is online.  MIRT has already hit the 15 year mark for the Total Therapy Protocol with something like a 74% survivability.  Cure.  Most doctors won’t use that word, but I’m so glad I have a whole slew of doctors in OK and AR that will.

5.  If you are panicked about where you will live while you are there, message me.  I’ve got tons of leads on furnished apartments, some reduced prices for UAMS cancer patients, and even a few that are of very little cost to the patient.

6.  I know, you are thinking, “Arkansas???  How could the leading institute for this deadly cancer be in Arkansas??”  (Think Sam Walton.  He had myeloma, too…hmmm….)  I thought the same thing.  But it is!  And the people and care there are pretty awesome!

7.  Prepare to have your butt kicked.  I will not lie to anyone that is getting ready to go through this.  There will be periods when you think you’re about to die.  But you won’t.  So suck it up and know that there is an end to your suffering.  Also know that it’s OK to feel terrible and hopeless.  All of us do at some point.  So, if you find yourself puking into one of those blue vomit bags in the middle of a crowded elevator, it’s OK.  We get it.  Some of us have been in your same spot (me).

8.  If you find yourself inpatient on the Myeloma floor (yes, we even have our own floor!) while undergoing treatment, prepare to be WOW’ED!  I’ve had multiple stays there, and they were a very positive experience.  Except the sleep…

9.  Listen to patients when they have suggestions for ways to make you feel better.  Some of my greatest tricks and tips came from patients, not my doctors or nurses.

10.  Speaking of nurses, there are none finer on this planet.  That’s just my opinion, but it was gained through experience.

11.  If your doctor ever tells you, “I’m sorry, there’s nothing else we can do.” or “We’ve done all we can” OR “You have 3 months to live.” Get on the phone to MIRT!!  I don’t have enough fingers and toes to count the number of people I have met there that are in years 5-10 of COMPLETE REMISSION after being told the same thing.

12.  You might be thinking, “How different can two treatments be?  I think I should just stay close to home.”  You’re way wrong, and they are WAY different.  Missing your family is so hard.  I know, I’ve got a 5 and a 7 year old.  I have a husband I miss terribly.  But I’d rather miss them for a year than have them miss me forever.

There are a thousand other things I can tell you, and I would be happy to.  If you are a newbie or oldie to myeloma feel free to contact me.  If you are a caregiver, I can hook you up with my mom, who is caregiver extraordinaire.  She takes her job seriously and is a FIERCE advocate for me and my new friends in AR.  She has all the caregiver answers to any question you can think up.

Oh, one last number that is very personal to me:

13.  If you are young.  If you don’t fit the ‘myeloma criteria’.  If you have babies at home that depend on you.  If you have a family that depends on you for financial reasons.  It will all be OK.  You’ll find a way.  We all have.  When it gets overwhelming and you think you can’t do it, know that there are a bunch of us out there.  While most who are diagnosed are in their 60s and 70s, there is a group of 30s and 40s, too.  We are small, but we are mighty!  We are the remission group…the CURE group of the future and we grow in numbers every day.  Sad, but true.  That may sound corny to some people, but they obviously don’t have myeloma;)

There is a mountain in front of me, and you can rest assured that it will be thrown into the sea.

“And Jesus answered them, “Truly, I say to you, if you have faith and do not doubt, you will not only do what has been done to the fig tree, but even if you say to this mountain, ‘Be taken up and thrown into the sea,’ it will happen.”  Matthew 21:21