The Sickness: Chapter 3

Yesterday I met the Top 6 Most Annoying People on the Planet.  They were all in the oncology waiting room at MCD.  I had plenty of time to figure out how annoying they were, because I waited over 2 hours to get to see the doctor.  I seriously doubt that 1) the upcoming presidential election can fix health care, and 2) that the disabled woman really had a hemi engine in her wheelchair like her bumper sticker claimed.

 

Dr. F said that my incision is healing nicely.  Although I still don't feel great, I am learning more every day about my new-and-not-so-improved insides.  It is a delicate balance of food and meds that will be tolerated.  Anything outside those imaginary boundaries is quickly rejected by my body and I pay the price for days.  Dr. F assures me that I will feel better, but it will take time.  Time as in months, not as in days. 

 

I was also released to drive a car and climb stairs as I feel that I am able.  That means more freedom, which I have sorely missed!  Last night, I went upstairs and tucked my cowboys into bed for the first time in three weeks.  Smile.

 

Then we moved on to the "what comes next" phase of the visit.  One of the two chemosensitivity tests have come back.  Dr. F gave me the stack of papers marked "FINAL REPORT" in big, bold letters.  At first, I didn't understand what I was looking at.  But as he began to talk, I began to absorb information.  On one side of the cover page of the report, there is a column that lists 13 different drugs, or families of related drugs, that are labeled "Agents Associated With Potential Lack of Benefit."  It means just what it says--each medicine listed there is ineffective in my body to fight cancer.  The list includes Taxol and Cisplatin, the two chemo drugs that rocked my world less than 2 years ago.  You can not imagine the sick feeling in the pit of my stomach.

 

There is another list on the other side of the page labeled "Agents Associated With Potential Benefit."  There is 1 drug listed there.  ONE.  There is ONE chemotherapy drug that might help me. 

 

I felt like I'd been punched in the gut.

 

I had gone in to this office visit believing that I had choices.  I was prepared to accept chemo, but I was also prepared to reject it if this test showed that the compatible chemo drugs were too harsh.  I believed that I was entitled to choose for myself.

 

It never entered my mind that I wouldn't have options.  And I didn't even need to ask Dr. F what would happen if I don't do the chemo.  I already know.  I went through hell, and it didn't matter.  I can barely wrap my mind around it.

 

I see now that I have no choices.  I have to do the chemotherapy.  It's one drug...one chance...my only chance.  This has to work, or......

 

STOP.

 

The drug is Doxil.  It is a cytotoxic drug that is used to treat aggressive forms of ovarian cancer and a specific type of sarcoma that is related to the AIDS virus.  That mental image is sobering.

 

Doxil is an irritant.  Side effects and their severity depend on how much of the drug is received.  Possible side effects include low blood counts (increased risk for infection), skin rash, hand-foot syndrome, peeling and/or sores on the skin, nausea, vomiting, hair thinning and/or loss, poor appetite, stomach/digestive issues.  Those are the main ones.  There is also a risk of interference with the pumping action of the heart.  My heart will be closely monitored for signs of disease or decreased efficiency at pumping blood.

 

If everything goes right, I will have my first Doxil infusion next Thursday.  I will do one infusion every four weeks for six cycles, with the last one in February.  We will do a CT scan in November and again in February to check progress.  I have found that past chemotherapy has left my veins in terrible shape, so I will be required to have another port put in.  We are still unsure when that surgery will be.

 

"My heart is in anguish within me; the terrors of death have fallen on me.  Fear and trembling have beset me; horror has overwhelmed me.  I said, 'Oh, that I had the wings of a dove!  I would fly away and be at rest.  I would flee far away and stay in the desert; I would hurry to my place of shelter, far from the tempest and the storm.'"  Psalm 55:4-8

Back to School!

 

First Day of School 2012

 

Goliath--5th grade

 

Little Middle--3rd grade

 

Baby--1st grade

The 3 little cowboys and their proud mama

Summer 2012 in Pictures

Thanks to my iPhone, I have been able to keep track of Summer 2012 pretty easily.  The cowboys are headed back to school in just a couple of days, so--sadly--it's time to wrap it up.

Before we did anything else, we traveled to Austin so that all of my guys could meet Reese the Niece (and cousin).  We are all head over heels in love with this little girl!

We visited a wildlife park in South Houston.  We couldn't believe how close we could get to the animals!  The boys were thrilled with the tram ride and laughed hysterically when a very excited buffalo snatched the food bucket right out of Little Middle's hands and tried to chew it up.

Abby Dog had a great adventure waddling her geriatric self through the wet cement of my parents' shower during their bathroom remodel.

 

We played together, and spent a lot of time with our friends, too.

 

 

After months of consideration, I got my first tattoo.

I wanted a visible reminder of God's infinite grace in my life, which covers all things, including The Sickness.

 

We went to kids camp with our wonderful church.  Goliath went as a camper; the two younger boys and myself went along as "helpers."  In reality, we received many, many more blessings than we gave that week.  I loved being with my boys and watching them learn, play, and worship.

 

We tried our hand at farming.

We grew a small vegetable garden in the backyard, and we picked many peaches off of our trees.  Yum!

We had an adventure buying lumber (my first time) and then getting it safely home so that Goliath could build a fort.

We took a day trip over the state line to Turner Falls with our friends Jaimie and Emily.  Unfortunately, I do not have a single picture of myself slipping on the algae-covered rocks and dropping all of our towels and our lunch into the river.  My little cowboys will never let me forget it!

I love these silly boys!

 

We have managed to mark nearly everything off of our Summer Bucket List.

 

So long, Summer 2012.  It's been fun! 

No Place Like Home

I got to come home unexpectedly early on Monday night.  My sweet dad battled crazy Dallas traffic for over an hour, but it was well worth it when he delivered me to this:

Yep, those are my guys being glad to see me.  And me, sporting crazy hospital hair, even more glad to see them.

Within the first 12 hours of being home, I broke one of the many rules that Dr. F had laid out for me:  avoid the stairs.  I seem to think that I am younger and in better shape than what I am, thereby being exempt from silly rules.  All I can say now is that the boys better keep their rooms clean, because I will not be going upstairs to check on them for some time.

Speaking of keeping our rooms clean...did you know that if you are living under this roof and you are in the 10-and-under age bracket, you can earn real $$$ by keeping your room clean? We call it a random room check (or RRC, for short, per Goliath).  The RRC is the brainchild of Nana, who has moved in temporarily to do my jobs so I can rest and recover.  RRC is a big hit with my cowboys!

My mother....I want so much to tell you what it means to me that she is here in my home.  I want to tell you how I am amazed at how she keeps up with all the little boy laundry--something I am never able to do myself!--, keeps the kitchen spotless, and makes it all look easy.  I want to communicate how her unconditional love and sacrifice makes me feel like I am the most important person in the world and how her presence here comforts me.  I want to make you understand that The Sickness is just a part of the curve ball life has thrown at me this summer, and that she helps me navigate my way and feel hopeful that it will be okay.  I wish I could explain how my sons have security and even a sense of normalcy because their Nana is caring for them.  Words are simply insufficient.  I have been overwhelmed lately with what I have in my life that is abnormal and faulty.  But when it comes to my mom, I can't help but be overwhelmingly thankful, because I know that I have something in her that many people never get to have, and she blesses me beyond measure.

It is worth noting here also that my hospital stay ended just in the nick of time.  This was my second stay on the 9th floor at MCD, and I think that my familiarity entitles me to make customer suggestions.  My first suggestion will be that there be some sort of discount off the overall hospital bill for patients who are able to do awesome medical tricks, i.e. remove an epidural line that is inserted and taped to your back, or remove a 4-foot NG tube that was running from your nose down to your stomach.  Extra dollars off should be rewarded for doing it in the shower without being aware of it.  I will be looking for those discounts on my next statement.

Abby Dog's birthday quietly came and went while I was in the hospital.  She is now 14 and 98 years old (human and dog years, respectively).  I felt bad that she didn't get her usual family party, but maybe we can make up for it once I'm back on my feet.  Honestly, she is so geriatric that I doubt she missed it much.  The old girl remains my most faithful friend with the biggest ears.  Love her.

Goliath and Baby are delighted that the first day of school is fast-approaching--come on, Monday, August 27th!!--while Little Middle is mourning the summer days that are slipping away.  Thankfully, I listened to a smart friend last spring who has 3 boys of her own and offered me this advice:  "Buy the wrap packs, Allyson.  The boys don't care about the shopping.  Buy the wrap packs!"  School supplies will be there waiting on the first day.  Backpacks and lunch boxes were purchased before I went to the hospital. Nana is filling in the blanks and is helping the boys get their back-to-school style ready.  My Goliath has a definite idea about what a 5th grade boy's clothes should be; in one word:  cool.  Don't tell my mom, but I'm a little glad she is doing this shopping trip with him.  My mommy-heart might not be able to handle the coolness of my little boy.

Although he is younger, Baby is also making choices regarding his own style.  He is replacing his old athletic shoes with these:

Sniff.  So cute.  And grown-up.

My Little Middle, however, hates shopping.  He would rather eat a vegetable casserole for breakfast than have to be dragged on a shopping trip, even if it is for his own clothes and shoes.  In a nice arrangement that can only be made if your grandmother lives to make you happy, he has simply described to Nana what he wants to wear on the first day of school.  She is going to shop for him and bring it home.  He's happy because he doesn't have to go to a real store, and she's happy because she doesn't have to hunt for him in all the clothes racks.  Problem solved.

And while the family does their thing, I am carefully nursing my long row of abdominal staples and working to keep food where it belongs.  It's a glamorous life, I tell you.  It will be another week or so before I know any results from chemo sensitivity testing.  Until then, I plan to take it easy and soak up the goodness that surrounds me.  There really is no place like home.

Hospital, Day 6

Today I....

--shaved my legs (the parts I could reach, anyway).

--got to wear pretty pink pjs in place of the icky hospital gown.

--continued to wonder how Ryan Seacrest belongs both on American Idol and the Olympics.

--ate a saltine, some ice cream, and a few bites of baked potato.

--drank apple juice.

--had a nice fireside chat with Dr. F. I still can't believe that a doctor actually cares so much about his patients that he will spend hours just talking about cancer and also revealing that he only carries a beer around at parties because his wife makes him. 

--listened to a brand new baby crying.  The post-natal floor is full, so they are moving some patients up here.

--got to visit with a few friends, both new and old.

--got to hug my cowboys and let them push the buttons on the bed to move up and down.  Smile.

--was disconnected from a couple of machines and switched from fluid to oral meds.  Progress!

--missed being in church, but told God "thank you" for giving me such a great church to miss.

--talked through some things with Mom and Dad.  Told God "thank you" for these two amazing people whose unconditional love keeps me going.

--received pictures of Tex the Nephew Dog and Reese the Niece that made me smile.

--marvelled that at this time last week, I was physically whole.  Thought about how God takes broken things and put them back together, and knew that in another week I will be marvelling again.



--watched the Olympics closing ceremony with my dad.  Couldn't figure out the weird octupus with the d.j. in the middle spinning tunes.

Hospital, Day 5

Days in the hospital are L-O-N-G.  The day started out behind the curve when morning light revealed that I looked like I felt:  like I'd been run over by a big truck.  See, there's this funny thing about getting your whole body cut apart and re-pieced back together--the body has to teach itself how to work again.  The way that God created our bodies is an amazing thing.  According to Dr. F, my body will bounce back from 3 invasive tumors and a resectioned (again) colon to become just as functional as it was before.  It simply takes time.

So while I'm waiting, I want you to know that I appreciate you.  Thank you for taking time to check up on me.  Thank you for the care that you've shown to me and my family, and for faithfully praying.  I need a clear head to try to truly communicate my heart to you...that will come later, when all of the parts are in working order again!  For now, know that the encouragement you've shown me force me to look ahead and your prayers spur my own faith.  Thank you.

You Alone

It is late and my house is quiet.  The cowboys are safely (and dare I say happily?) sleeping over with friends.  Abby Dog is resting by my feet.  On any other night, I would feel content.

Tonight, though, I am a tornado of emotions and anxiety and fear.  When I wake up in the morning, I will shower and head to the hospital.  I will walk the now-familiar halls down to the surgical wing.  I will kiss my husband, hug my parents, wave to our friends, and bravely--I hope--go back to the operating room.

This summer, particularly these last few weeks, has been so hard.  It seems that even when I try to stand very still, the world continues to crumble around me.  My best efforts to hold it all together have failed miserably.  I have witnessed so much suffering, not the least of which is my own.  The pain and loss that I feel is nearly unbearable.  Nearly.

And just when I am teetering on the edge, literally fearing for my life, my Jesus calls out to me.  He reminds me of his goodness.  He reminds me that I don't have to be scared.  He reminds me that he goes with me and that he loves me.

You alone, Lord, are enough.  Thank you for holding me close tonight.  May my weakness be perfected in your strength.