Wednesday, November 27, 2013

Monster Madness

I have been sitting on the counter in my mom's kitchen for the last little bit, popping cherry tomatoes into my mouth like they are the last morsels of food on the planet. That's because I ate next to nothing today. I couldn't eat anything because I was too busy being treated like a cancerous piece of crap. Wanna hear about it? I'm here in Houston, where it is actually cold, ya'll. Well, cold by Houston standards, anyway. I'm wearing a sweater. It's unheard of. I'm here because I had a crazy lineup of cancer appointments at MD Anderson. I was there from 7:30 a.m. to 4:30 p.m. yesterday, and 9:30 a.m. to 4:30 p.m. today. It's been a long, grueling, unbelievable 48 hours. Yesterday was Test Day. I had blood work done. I did an echocardiogram, an EKG, x-rays, and last but not least, my favorite: The CT Scan. It went ok up until the end when the nurse was trying to start an IV for the CT contrast. She was not able to find a usable vein. She called a friend nurse, who found one, stuck a needle in me, and then watched the vein collapse. Nurse #3 came along, stuck me, failed, and stuck me again. Ow ow ow ow ow ow ouch!!!! After that, they gave up and sent me to the Infusion Therapy department, where I waited an HOUR for a member of "The IV Team" to save the day. Ridiculous. But Super-Craig easily placed the needle and got good blood flow. Once that was done, the test itself was far from enjoyable, but was manageable. This morning I put on my sweater and my tall black boots, and braced myself for the day. Mom and I got to MDA 40 minutes before my first scheduled appointment. I can't go into all the details here--you wouldn't believe it if I did--but it will suffice to tell you that I FINALLY saw a nurse practitioner at 2:30...more than 4 hours after my 10:10 appointment time. Unbelievable. I'm usually a pretty nice lady, but I wasn't feeling all that benevolent this afternoon. So much so, in fact, that I rounded out my day by filing a complaint in the Patient Advocacy department. MDA needs to get it together. The complaint came as a result of someone failing to do their job. We have been waiting for our insurance company to approve the clinical trial. Staff that I spoke with assured me that it would be taken care of by the time my appointment rolled around today. However, when I arrived at MDA today, insurance had approved only one of the two pills that make up the clinical trial. One without the other is useless. (Confidential to all you haters: This is not a political thing, an Obamacare thing, a Democrat thing, or whatever else you want to blame it on. It's just a stupid money thing.) An appeal has been filed, but if Aetna doesn't come to their senses, then the clinical trial is out. I also discovered that under clinical trial rules, if insurance doesn't come through and pay, then all of the tests that I did yesterday will be for nothing. They are only good for a short period of time. After that time is up, I will have to go back and redo every blood draw, heart check, and The Scan. Grrrr. One of the appointments that I had today was with a radiologic oncologist. (Try saying that three times fast!) Interestingly, this is the first appointment I've had with a radiologic onc. Ever. It has never been a viable treatment option--until now. The radiation intern showed unmatched kindness as he explained how it works, and more importantly, why I need it. Monster is growing...really, really fast and really, really big. Dr. Brown displayed the images from yesterday's CT scan. He patiently explained what I was looking at on each frame. What I saw was astonishing, and then was confirmed by the paper report from the radiologist. That report tells of "a large pelvic mass", measuring nearly 10 centimeters at its widest point. The mass, aka "Monster", is tangled up, wrapped around, and filling up every nook and cranny in my lower abdomen. He is even touching my tailbone! Additionally, there are two Monster babies in my lungs--one on the right, and one on the left. With such exponential increases in growth, radiation would be a palliative care option for me. There is some hope that it might help to control the symptoms that Monster has brought along. The always-amazing Nurse Allyson gave me a name of a doctor who works with Dr. F. I'm banking on him agreeing to do the radiation so I can be close to home. Two days before Thanksgiving, and this bombshell was dropped in my lap. It's not a surprise, per se, but there's something about sticking a number on it... 10 centimeters is a big enough space to birth a baby. 10 centimeters is approximately the diameter of a bagel. 10 centimeters roughly measures an average-size man's palm (crosswise). 10 centimeters is the diameter of a wiffle ball. Those are sobering measurements. While I was lying on the table listening to the machine instruct me on when to breathe, I closed my eyes tight. I did not really care to see the fake ceiling tiles that I suppose are meant to be calming. They had lovely cherry blossoms on them. In my mind, cherry blossoms don't belong in the fifth circle of hell. I chose instead to keep my eyes closed and concentrate on Truth. Snippets of Scripture played through my mind like an old recording: "You are precious in my sight...I will not leave you or forsake you...wherever you go, I am there...when you go through the fire, the flames will not touch you...I know the plans I have for you...I will strengthen you and help you...My yoke is easy and my burden is light...I will lift my eyes to the hills from whence comes my help." Those same pieces of Truth ran through my head as I looked at the pictures of Monster. His ugliness, his scariness stared back at me through the screen and made my heart beat faster. Even the doctor said, "He is angry." But I know this: Whether Monster is the size of a bagel or a beach ball, my God is bigger. My God is stronger. My God will not leave me to do this by myself. Every day brings me a little bit closer to the reality of Psalm 23: "Yea, though I walk through the valley of the shadow of death, I will fear no evil, for you are with me." I don't have to be afraid. Words like "palliative" don't exactly conjure up warm fuzzies, but I know that this hurting is for such a short time...and what waits for me is a forever that is so much more beautiful than even the prettiest cherry blossoms. He is worthy, friends. Oh, He is worthy. This Thanksgiving season, when on the surface it may look so dark, I will still be grateful. He has given me so much--SO MUCH--that I don't deserve. Jesus owes me nothing, yet He gave everything. Me and my wiffle ball-sized Monster will worship and give thanks. He is good all the time. THAT is TRUTH. P.S. My grandparents love me a lot. Like, a bushel and a peck. At age 38, that still amazes me, and is one of the most precious things I know in this life.

14 comments:

Melodie England said...

I don't know you, but I love you. Very. Much.

Sandra Wilkins said...

I don't know you either, but I'm praying for you! Your faith is awe-inspiring and such an inspiration to many folks like me.

Anonymous said...

Thanking the King with you today friend that despite our worst monsters He is seated on His throne unopposed, unwavering, Mighty and in control, without fear or dismay He Is. . . .love to you and your sweet family. __Rebecca Coffee

Angela said...

Remembering you in my prayers and thanking God for your testimony.

Anonymous said...

I don't know you either, but you're amazing. I think of you often, read your blog regularly, and send up prayers when your name crosses my heart. Sending you love and light this Thanksgiving, and may it be as extraordinary as you are.

Anonymous said...

Allyson, I pray for you daily. You are such a testimony to God's grace, Joan Malik

Anonymous said...

Hi Allyson,
I am yet another one whom you have never met. A very old friend of mine name Danielle Bell Waxman sent us all a link to your blog. I read it and must say you made me laugh out loud and tear up at the same time. I had a CT scan myself a few days ago while on a visit to the ER with some abdominal pain. The contrast drink tasted like crap and that "warm" sensation of the other contrast they inject was unsettling. Everything was OK in the end. I'm not going to weigh this message down with a lot of depressing "I'm sorries" and "Hang in there's", just know that many of us out here in this great internet space have read your story and are arming ourselves to help you battle that Monster. It may be nothing more than hopes and prayers....but we will help in any way we can. Enjoy today....your boys are precious (have two of my own) Stuff yourself with turkey and take a gazillion pictures. In the Thanksgivings to come, when this has all passed, you will need photographic evidence for you and your family to dwell over and remember. I will pray for you Allyson! God Bless! Happy Thanksgiving!

Anonymous said...

Allyson, I too, have never met you but follow you regularly and I pray for you and your family. Your journey has been long and hard no doubt. What amazes me is your ability to see the best in everything, your witt and your willingness to share this with all of us through both your mental and physical pain. Your "cowboys" are truly lucky to have you as their mom. Your faith in Our God is unwavering. You are truly an inspiration.

CDH said...

This reminds me of the "thorn" post I put on your blog a long time ago. You carry the thorn for us all. I wish that it was me and not you that had this. But you have been a shining example of a woman of faith and I am proud of you. I love you hubby

Kim said...

So sorry for the insurance debacle. I feel your pain and frustration. I am continuing to pray for God's goodness to be poured out upon you and your family in spite of the setbacks that seem to keep pounding your way. My God's Spirit sustain you in His peace and hope.

Anonymous said...

"Be still before the Lord and wait patiently for Him!" Ps. 37:7
"See, the Sovereign Lord comes with power, and His arm rules for Him.
See, His reward is with Him and His recompense accompanies Him."
"He tends His flock like a Shepherd..." Isaiah 41:10, 11
Beautiful one, do your remember this song? Let's sing it together and all God's children can join us!
" Our God is greater, our God is stronger, God you are Higher than any others, Our God is Healer, awesome in power our God, our God; And if our God is For Us then who could ever stop Us, and if our God is With Us then what could stand against!"
Jesus Christ is Beautiful and Faithful!

Love!

Anonymous said...

Allyson,
We, too, are strangers who pray regularly for you and your family. I have just downloaded a free book from Amazon called The Miracle Ship, by Brian O'Hare. I don't know if it would interest you, but it does deal with faith healing thorough Jesus Christ. May God's blessings be with you all.

Anonymous said...

I don't know you but came across your blog. My wife had a 15cm mass removed along with a hysterectomy the day before Thanksgiving, so as a husband I can so appreciate what you are going through. She has stage 4 cancer that was diagnosed less than a year ago and has had 3 surgeries... our 7 year old is gonna lose Mama and we don't know when and it's heartbreaking to see your family is suffering through your illness.

Praying for your family... what do your children know? Our 7yo knows Mama has something called cancer but doesn't know that its terminal... can't bring ourselves to say it. We're clinging to hope but we also know what we've been going through.

Anonymous said...

Love your faith and testimony. Let His Peace flow over you! I feel a connection to you and am devastated for your family, for reasons of my own. Know that He is holding you--- and us!