Day One Is Done

Yesterday I started testing at the University of Arkansas Medical Center, UAMS. It was the LONGEST day of my life! First they stuck me and took TWENTY vials of blood…I felt like I was drained dry and I could not get warm for the rest of the day. Then I talked to case managers for a couple of hours, then we get to bone marrow collection. Oh, holy crap. There may come a day that I send out requests for bone marrow donation. Let me tell you this: giving that up voluntarily is such an amazing sacrifice. I’m not sure if the process of donation is the same as getting a sample from me, but you will be my hero and a hero to so many others! I won’t go into details of how much that sucked, or that I MIGHT have cried, but I will tell you these people in Arkansas do it WAY different than at Mercy in OKC. I met a 10 year survivor in the waiting room that had gone through a bone marrow biopsy 30 times! God Bless that woman.

After my bone marrow biopsy, I spoke with a sweetheart of a nurse who gets to be my case nurse. I’m pumped about that. She was a doll face! After meeting with her I went to a pulmonary function test. You would think that huffing and puffing into a tube would be easy. Not so much with a giant growing tumor in your sternum. I literally thought I was going to pass out, but then this crazy pulmonology tech started randomly bashing chiropractors, so I stayed awake only because I was fuming. What a dummy…but I passed my test with flying colors. I SOOO wanted to say, “Hey, listen here, deary. My husbands a chiropractor. Now don’t you feel like a fool!” But, that would have been mean, so I just thanked her and left.

We finally got to leave the campus at that point. It was a little after five, so we grabbed a chic filet salad, went back to the hotel and relaxed for a few hours before we had to go back. How crazy is that???? I was EXHAUSTED and had to go back for a 2 hour full body MRI that started at 8:30pm. What a CRAZY long day! I get to do it again starting at 10:30 this morning. yiippee!

The campus really is amazing, though. I can see why it’s the number one myeloma institute in the world. The technology here, just like the rigorous testing schedule everyone goes through is top notch. The doctors, are top notch as well. From what Jim, our volunteer guide, told us, Dr. Barlogie hand picks his patients. Then the rest of the patients are filtered through his team of doctors. I’m not sure if I should be scared or relieved he picked me. I guess I’ll find out when I meet with him on Friday!

So, here in just a bit we will head back up there for bone scans, lab and an electrocardiogram. There are several other things on the agenda, but I don’t think it will be as grueling as yesterday. Hopefully we will have a little time to go around and shop for another place to stay. Our place we found online is a DUMP. Brown carpet, mustard window shades and orange bedspreads. The last thing I will need after coming home from a day of chemo is to walk into my bedroom and immediately be depressed. It is a seriously depressing place!! I need some color in my life:)

One last thing, and to me, the biggest of all. To my friends and family that continue to pray, continue to send kind words and care packages, THANK YOU. The love I have experienced since only the beginning of January has been life changing to me. I met with a social worker yesterday that kept asking me how I really feel, like he wanted me to break down in his office. I feel GREAT because of the support I have all around me. I cannot do this on my own, and I know that. Without you, I will crumble. Being sick is a bummer, and as much as I wish I didn’t need it, I need all the help I can get. So thank you, I will never be able to thank you enough. I love each one of you!

The LORD is my strength and my song; he has become my salvation. Shouts of joy and victory resound in the tents of the righteous: “The LORD’s right hand has done mighty things! The LORD’s right hand is lifted high; the LORD’s right hand has done mighty things!” Psalms 118:14-16

Throttling the Bully

If Multiple Myeloma were a kid, it would be that brat you grew up with that talked back to the teacher and bullied your friends.  That kid that made you want to be the class hero and punch in the face.  I knew a kid like that.  His name was Jonathan, and I remember having that recurring dream that I’d throttle him even though he actually scared the patootie out of me.

Obviously being a child and afraid of a bully is much different than being an adult and NOT being afraid of a bully.  My kids know I will not, under any circumstance, tolerate bullying.  In fact, if they are faced with a situation of standing up for a friend or themselves in the face of a bully, by golly they better do it.  That’s how I’m going to approach my growing (yes, it’s gotten bigger) monster tumor that MM gave to me.  Now when the Arkansans are ‘melting’ it (that’s what they call it when they dose me with high levels of chemo) I can focus on throttling it and be oh so satisfied when they tell me the monster’s been melted away!  Unfortunately, that’s only part of the problem, but the easiest place to start.  It was, after all, what inspired this blog in the first place.

For those readers that don’t know, the cancer that is causing the tumor, known as a plasmacytoma, to grow is actually a plasma cancer.  Since plasma is everywhere, quite annoyingly, so is multiple myeloma.  We can’t just get rid of the tumor, treat the area and go.  It doesn’t work that way.  My bone marrow biopsy results came back with plasma cell myeloma involving 85% of the marrow in my body.  Yup, that’s a big number.  It’s okay, though.  I will beat this…throttle it!

I’ve been told the specifics about how this will happen, but if I try to repeat it I’ll just end up looking like an idiot.  Look, I’m a blogger, not a doctor!  (heheheheee;)  Anyway, my short term goal is to get onto a clinical trial in Arkansas, and my long term goal is to CURE this cancer.  Not remission, but CURE.  We asked my oncologist what the definition of ‘cure’ is in the cancer world, and she replied, ‘no evidence of the existence of disease.’  My chart will say those words when all’s said and done.  This is a rare cancer with some even more rare variables, but I’m young, healthy, determined and angry that I’m here in the first place.

I’m ready to get started, and I will not tolerate this bully!

‘My son, be attentive to my words; incline your ear to my sayings. Let them not escape from your sight; keep them within your heart. For they are life to those who find them, and healing to all their flesh.’  Proverbs 4:20-22

 

My People Are Amazing

Once again, I am blown away by the goodness of people.  Last night my brother in law, Mike, called to let us know that he set up a Medical Expense Fundraiser for anything not covered by insurance (ex: gas for travel, hotel stay, food, etc) for my family.  The day before, my sister in law, Sarah, called to get family food preferences in order to organize a Care Calendar so that my husband and kids wouldn’t have to eat fast food every night when I’m in Arkansas.  You can find these on the “Donations” page on my blog, or by clicking here.  Today one of my best friends called to discuss designs so that she could get T-Shirts made for anyone who wanted to support me through this journey.

My people are AMAZING.  To see these people that I’ve loved my whole life step things up even more than they have before…no words can express my gratitude.  This alone will get me through my disease.  This will help make up for the time I’m away from my family.  To know that this is the scope of the net beneath my feet is so immensely humbling.

I would never wish an illness on anyone, but I hope everyone has a chance in their lives to feel this loved.  To know, without a shadow of doubt, that they will be picked up if they fall.  That they will be sheltered through the storm and that nothing can be too big or too much.

My People Are Amazing!

‘Therefore let us be grateful for receiving a kingdom that cannot be shaken, and thus let us offer to God acceptable worship, with reverence and awe’  Hebrews 12:28

10 Weeks…

What a day! What a week! It’s amazing how quickly this has all happened, and at the same time, it’s difficult to understand why I feel that some things are going so slowly. Like my oncologist said, there will be times where you’re overwhelmed running from test to test to lab to imaging study, then everything comes to a screeching halt while waiting for results and you’re left twiddling your thumbs for days. My waiting period officially started this afternoon, and I’m SOOOO thankful.

My testing ended today with a bone marrow biopsy. I made the insanely stupid mistake of googling ‘bone marrow biopsy’ last night. Of course the first thing that pops up is the HUGE needle. If you’ll remember from an earlier post, I don’t do sedation very well. It just doesn’t work on me. I BEGGED for a double dose. I really think I embarrassed myself just a bit, but I don’t care. That sucker was monstrous! In reality, though, it wasn’t too bad. It’s not something I’d like to do again, but it wasn’t terrible. Unfortunately it’s left me with a pretty intense pain in the butt this evening.

Today wasn’t all bad. I received great news this afternoon. Dr. Barlogie at The Myeloma Research Center in Little Rock has decided to take me as a patient! AWESOME! I leave for 4 days of tests on the 27th. Then come back that weekend just in time for little man’s birthday party. At that point I’ll have the option of going back to Arkansas for 4 weeks, then coming back home for 4 weeks, then going back to Little Rock for 6 weeks. They tell me that at the end of that 6 weeks I will at least be in remission. That’s 10 weeks away from my hubs and babies. 10 weeks!

I can and will do this, though. 10 weeks now, or missing out on a lifetime. I’ll take the 10 weeks, and do it with a smile on my face!

‘Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.’ James 5:16

On Charity

char·i·ty:

1:  benevolent goodwill toward or love of humanity

2 a :  generosity and helpfulness especially toward the needy or suffering; also :  aid given to those in need

:  an institution engaged in relief of the poor

:  public provision for the relief of the needy
3 a :  a gift for public benevolent purposes
:  an institution (as a hospital) founded by such a gift
4:  lenient judgment of others
There is nothing I can say to adequately describe the incredible charity I have felt over the past few weeks.  People that I consider childhood friends, people who were once considered much less than friends, people I’ve never met and live thousands of miles away, family and the friends that love and know me best have lifted me up in charity.  I am forever grateful.  This lesson alone has taught me so much.  It’s teaching me how much more I need to be for others.  I don’t know how or what, but when my little journey with cancer is finished, this will be paid forward.
I have been blessed with so many prayers, prepared dinners, offers of help with my kids, cleaning, and the awesome giant box of throw away cups, plates, napkins and Clorox wipes my super awesome Aunt Kathy left in my backyard yesterday.  I’ve been asked on coffee dates from long ago girl friends, shopping dates and phone calls just to ‘air out any frustrations’ or get in some good mom talk.  During our busy lives we sometimes forget how important human contact is outside of our immediate family.  Refreshed mommies and wives make good mommies and wives!  As far as the shopping goes, there’s nothing more embarrassing than asking the elderly gentleman standing in front of the milk section with you if he wouldn’t mind picking up that gallon of milk and lifting it in your cart.  Having a broken sternum sucks.  The charity of help is such a blessing.
So, thank you, thank you, for the prayers and support.  They have made all the difference!
“Give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.”  Luke 6:38

Every ‘Big Thing’ is Just A New Chapter

Looking at life and imaging it as a book makes things a whole lot easier for me.  Every book has a beginning, an end, and something BIG in the middle that makes that book a best seller.  This is my something big, but I know it’s just a chapter in the middle.

When I hear of people my age having cancer, especially women, I think of breast cancer.  But I rarely even think of cancer.  I know only a handful of people who have had it, and most of them have been much much older than me.  Isn’t that what makes a good book, though?  That the unexpected happens to someone you would least suspect?  Cancer doesn’t happen to a 35 year old mom of two little kids, and a nutrition coach on top of that!  There is NO logical reason for this to happen, but logical books are boring:)

I’ve been diagnosed with Multiple Myloma.  Statistically, you have a greater chance of getting this disease if you are over 60, male and African-American.  You can bet on a blog detailing why I think this has happened in my body.  It’ll be a very angry blog, but one for another day.  Right now I’m focused on more tests, including a bone marrow biopsy next Tuesday.  I’m focused on not breaking any other bones, too.  That seemed to be my oncologists number one immediate concern.  Broken bones will set back treatment, and I’m ready for that to start TODAY.

In my ‘chapters’ ahead, I’ll be traveling to the University of Arkansas Myloma Institute for Research and Therapy to meet with Dr. Bart Barlogie.  He’s apparently the myloma guru.  While there I’ll discuss therapy including medication, stem cell transplants and chemotherapy.  I might even be able to hop onto a clinical trial.  Whatever they tell me I need to do, I’ll do it and with a smile on my face.  I don’t have the time, energy or patience for cancer.

2014 will be a big year.  Without a shadow of doubt, my family and I will defeat this, grow from it, and move on to the next chapter.  I’ve already grown from the realization that there is so much love and support to be shared.  You can expect a blog on that, too!

“I am the true vine, and my Father is the vinedresser. Every branch in me that does not bear fruit he takes away, and every branch that does bear fruit he prunes, that it may bear more fruit. Already you are clean because of the word that I have spoken to you. Abide in me, and I in you. As the branch cannot bear fruit by itself, unless it abides in the vine, neither can you, unless you abide in me. I am the vine; you are the branches. Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing.”  John 15:1-27

 

 

Quick Update

I didn’t want to post another blog until I had more answers, but I’ve had so many inquiries over the last few days that I thought I’d send an update. My internest called on Tuesday with some discouraging, but expected news. My body is producing abnormal protein and the pathology report shows a bunch of yucky plasma cells.

Most likely we are looking at a plasma cancer. Yucky shmucky. I meet with an oncologist this afternoon to go over additional blood tests and discuss our next plan of action. I already have a bone marrow biopsy scheduled for next Tuesday, and I will also be having additional image studies.

I’m going to war, people! Time to suit up and ship out.

‘The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have it more abundantly.’ John 10:10

The Good, The Bad and The Ugly…

The Good: No surgery tomorrow
The Bad: No diagnoses yet
The Ugly: I could use a drink

Dr. Tytle’s (biopsy doctor) office called this morning to let me know there was a mess up at the lab this weekend. Apparently the pathologist assigned to my case wasn’t even scheduled to be in the office. Not too smart, there, Mercy Hospital. Especially not too smart since my surgery scheduled tomorrow was dependent upon those results. Come on people, this is my life you are screwing with! So, after a quick freak-out and even quicker anger session, I got on the tele and started bugging everyone. Let that be a learning experience for them! Don’t be dummies because I will kill you with kindness until I get what I need:)

About 45 minutes later I got a phone call to cancel surgery tomorrow. That SUPER SMALL chance of there being enough biological material came through. What does that mean? It means that some pathologist out there has a good idea of what my diagnosis is, but he needs to do more ‘staining’. I hate stains. I hate biological stains even more. (OxyClean Max Force does wonders) Maybe as a funny ha-ha I’ll send a gift box to my pathologist. I understand it can sometimes take DAYS when they need to ‘do more stains’.

So, that was the good and the bad, now to the ugly. I could TOTALLY use a drink. I will probably pick up the kids from school, go over Harper’s homework, encourage them to go upstairs and build me something ‘special’ with the MILLIONS of lentil sized legos they got for Christmas and then make me a nice glass of wine hidden in an Eskimo Joe’s cup. Don’t judge!

‘Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.’ John 14:27

On Being Unique

If I had a dime for every time I heard the phrase, “‘This is unique.’, ‘This is rare.’, or even, ‘This is something I may see only once during all my years of practice!’,” I’d be rich. Well, not really, but I’d probably have about $0.70. It’s not much to bank on, but it’s there. Apparently, the whole You’ve-Got-A-Tumor-That’s-Eaten-Your-Entire-Manubrium thing isn’t seen very often. I’ve always thought doing things the same as everyone else is boring. Yippee me!

I had the CT guided biopsy with conscious sedation yesterday. That was a tad bit of a joke. There was no sedation, only consciousness. Imagine feeling the pop of a hollow needle go through your bone (or what’s left of it) and being fully awake. It was great! (Joke) Unfortunately, that stupid monster is MILLIMETERS from my aorta. The doctor performing my biopsy decided it was too much of a risk to continue the procedure, so they sent me back to recovery with instructions to head over to the Heart Hospital.

I spoke with Dr. Garrett at the Heart Hospital about why the biopsy doctor was unable to get a good sample. We discussed all the options and decided on surgery. Dr. Garrett is a cardiothoracic surgeon, so I suppose if I had to pick someone to operate that close to my aorta it would be him. There’s still that small possibility the lab will be able to get some answers with the bit of tissue we have, but I was told not to get my hopes up.

This next surgery is scheduled for Tuesday. I would be honored if you would say a quick prayer for steadiness of Dr. Garrett’s hands during the procedure. ‘Millimeters’ isn’t very much space to work with!

“Surely he will never be shaken; a righteous man will be remembered forever. He will have no fear of bad news; his heart is steadfast, trusting in the LORD. His heart is secure, he will have no fear; in the end he will look in triumph on his foes. He has scattered abroad his gifts to the poor, his righteousness endures forever; his horn will be lifted high in honor.” Psalm 112:6-9

Biopsy tomorrow!

Tomorrow is biopsy day! When the doctors told me I’d be getting a biopsy, I figured they’d give me some local anesthesia, stick me with a needle and we’d call it a day. Weeellllll, not so much. I’m so cool I get a CT guided Core Needle Biopsy with conscious sedation…woot woot! I get to spend the ENTIRE day at the hospital tomorrow. I have a feeling I’m going to become very familiar with that place.

I should be pretty close to a diagnosis by early next week. Keep your eyes open for progress blog!

“Then your light shall break forth like the morning, Your healing shall spring forth speedily, And your righteousness shall go before you; The glory of the LORD shall be your rear guard.”
Isaiah 58:8