In Sickness and in Health

Battling cancer with love, medicine, and the Giver of both.

Disjointed Thoughts

I have chemo brain.

I’m grouchy.

I cry at anything.

And I am definitely sick of sucking on ice and ice cream and pop cycles.  Half an hour to go yet.  My mouth is tired of being numb.

Yuck!

To think I’d die if it weren’t for the gems I’ll get on Tuesday.

God is still with me!

 

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Some pics

All’s well that’s going well.

DSC01382DSC01385 DSC01380

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Still Kicking

Well, things are running smoothly.  I just finished my fifth round of the Cytarabine and Etoposide.  I have three more doses of those drugs that will run over night and tomorrow.  And then one last treatment on Sunday which will be the “M” drug.  That one is short and runs in just half an hour.  But I have to chew on ice for about six hours.  The reason is to slow down the blood circulation in my mouth because this drug is known for giving mouth sores.  It’s ingenious!  Just numb your mouth and the chemo can’t circulate well. 🙂

I’m receiving another bag of potassium currently.  I’ve had to have a fair share since being in here.  That’s always how it works for me.  Chemo slowly depletes me of it for some reason.  After that I hope to get up and get a good walk in.  I have to stay low key while receiving chemo.  I cannot even be up in the hallway walking.  But when I’m unhooked I’m free to go.  The last couple of days I’ve walked over a mile/day.  Or as Josh says, it’s more pacing than walking.  I am not allowed to leave the transplant unit so it’s a very short hall, but it’s something.  They have it neatly marked off.  If you walk it back and forth 23 times it’s approximately a mile.  Praise God for the energy I still have.  I’m not convinced I’ll be able to do this next week.

The doctor kindly went over the schedule with me again this morning, saying how I will receive the last chemo on Sunday and then the stem cells on Tuesday.  She reminded me that this chemo will wipe out my bone marrow in ways it could never recover unless they had the stem cells to put back in me.  I laughed.  How else do you respond?  I said, “Well, I’m just glad you can do something about it.”  She laughed and said, “Those stem cells of yours are just down the hall in the freezer.” 🙂

I’m not feeling many effects from the chemo at this point.  The main thing is some side effects from the steroids.  Not surprising.  I feel bloated and I burp all the time.  Also have some hot feet at night.  But I guess I can deal with that if it means no vomiting.

I find myself praying with about every chemo bag, “Lord, just please enter my body with this chemo and protect me!”

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Prayer Request

I forgot to add a special prayer request.

One of these drugs I’m receiving twice a day for four days is the same as one of my ICE drugs.  I’m hoping that how it is combined with other drugs makes a huge difference, because I do not want the headaches and back pain all over again.

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Discouraged

Thank-you for all your prayers and comments!  We need them.

I had a melt-down tonight.  Just sobbed.  The bigness of this all completely overwhelmed me.  My nurse just walked in not long ago and informed me that she would start my chemo again tonight at 10:00.  She said they will give me the same dosages of the two drugs they gave today.  One at 10:00 tonight and one at 1:00 in the morning.  WHAT???  I was NOT informed of this.  My doctors simply told me I would receive these two drugs over the next four days.  And I assumed it would be once a day.  I had no idea it would be twice a day.  What a let-down!  All that chemo sounds impossible to me.  God, where are you?  I cannot do this…

I tolerated them fine today but my real worries are for next week when they wreak havoc.  How can a body handle that much poison?  Maybe most people who go through this don’t think much about that.  But I’m sorry, I do.  My spirit is not very strong right now.  Not much faith.  I do NOT want to go through with this.  But I find myself wanting to echo Jesus’ words this week, “Not my will, but Thine be done.”

He’s on my mind a lot.  My week seems impossible.  I don’t know how He endured all He did.  When I thought about how alone He was, I want to stand up and say, “Oh Jesus, I will stand with You!  I won’t desert You.”  As I say it, I know I can’t even carry it out without His strength.  He was the one who was saying at the cross, “Jean, I will stand by You!  I won’t desert You!”  I don’t know who wouldn’t serve a God that loving and that strong!

I am at the end of another day and I am still alive!  Praise God!

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More Thoughts

Beware, I’m on steroids again which means my mind goes and goes.  I woke at 5:30 this morning feeling extremely refreshed.  Didn’t sleep much after that I don’t think.

If anyone saw a half crazed, staggering woman on the streets of Charlottesville yesterday, it was “you know who.”  Kidding.  But the chemo did have alcohol in it and did make me stagger.  Hmm…I guess I’ll confess in church once I get home. 🙂

Since I’m feeling alert I decided to write on some thoughts I’ve had lately:

I used to say, “God allowed this cancer in my life.”  I’m rethinking this a lot.  While it may seem like a comforting concept in some ways, in other ways I’m finding it disturbing.  I’m not sure I want to give God that much “credit” for something evil.  And when I say evil, I mean evil.  Let’s call cancer what it is.  It’s a result of the fall and it’s certainly NOT from God.

I know, I know, by saying God allowed something doesn’t necessarily mean He inflicted it.  But, the statement is making me uncomfortable.  What I’ve found is that it creates an “enemy God” in my mind.

Some of these ideas are born out of hours of pain.  I’d endure and endure, but I’d hit a breaking point and get so angry.  I reasoned that God was big enough to alleviate this pain and He wasn’t doing it.  Then it was a choice He made right?  Maybe, but I’m finding that idea also disturbing and unhelpful.  The only thing that would really help me at those times was when it would finally sink in how much God is for me.  Usually that was experienced in a picture of God crying over me.  This picture freed my mind from the lie that God was my antagonist.  Then God become a friend not an enemy.  Suddenly I realized He Himself was suffering with me in every painful cell.

I think this is the same concept when thinking about illness in general, actually any brokenness.  Yes, I believe that at Jesus’ death and resurrection, evil was defeated for all time.  BUT, quite obviously God allowed evil to have a reign, though the time is limited, in which to wreak its havoc.  And friends, THAT is where this cancer comes from.  We’ve got to accept the fact that we live in a fallen world and every single human is going to be plagued with evil in some form or another.  And lets call it what it is, instead of tagging God onto the end of it.

You’re probably shrieking, “Heresy” at this point.  Hang on.  I’m not done.  Everything I’ve said up to this point does NOT diminish the sovereignty of God.  I firmly believe that though He has allowed evil a time to reign, He has set parameters for it, AND He has ultimate say.  He can thwart evil plans.  So, now you may be thinking what’s the difference then really if you say that after the resurrection God allowed evil a bit longer to reign or whether you say God allowed Jean’s cancer.  Big difference to me.  It keeps individual bad situations from becoming such a personal thing with God.  Maybe instead of looking down and thinking, “Ok, now I’m gonna allow cancer in Jean’s life because I see it could serve to perfect her,” He looks down and sees the horrible havoc being wreaked in my body.  And I think at first He weeps and then He brings out His redemption.  Redemption that turns the evil on its head.  And I mean talk about making the enemy sorry for ever even thinking about touching His child.  Because the fact is I’m better off for having suffered under the curse of this world only to be redeemed by an amazing Man.

Here’s another thing that’s been rolling in my mind:
Right before being admitted for the transplant I did quite a bit of thinking about death.  I had no idea whether I’d make it through this process or not.  Still don’t.  And it drove me crazy how little control I had/have over life and death.  I would cry out over and over, “Oh God, I just want to LIVE!  Please let me live!”  I’d reason with Him like Job, “What good will I be dead?”  Through all this I found hope and despair.  Sometimes I’d feel certain beyond a doubt that I was gonna beat this stuff and live.  Other times, doubts were much stronger.  Even if I survive the transplant who’s to say the cancer won’t be back?

In the despair, I’d weep for what I was missing.  For the life I longed to live but couldn’t.  For all the dreams I wanted to fulfill and things I wanted to do.  I’m not ready to die!  In a very wonderful moment one day it dawned on me that I don’t really HAVE to accomplish all those things I want yet to do.  I would love it if I could, but I realized that to sit and focus all my attention on that was depressing me and destroying my joy.  I thought, “I wonder what it would be like to be thankful for the day I’m currently living.”  And with that came an epic realization: If I can get to the end of every day and still be living with all this brokenness in my body, then I have won a victory.  It’s one more day of life.  That focus has made a huge difference for me.  It has switched my fulfillment from great big things I want to accomplish to every day/every breath.  Thank-you, Jesus!

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BEAM–Day 1

Jean is doing okay after the first whammy. The pre-meds made her drowsy and the chemo made her loopy (thanks to the alcohol content) but no serious pain or discomfort, thank God.

Just in case anybody wants to get mail to us during our time at the hospital please send it to:

UVA Hospital Stem Cell Transplant Unit
PO Box 801453
Charlottesville, Va 22908

 

Keep praying. One day at a time.

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Suffering with Him

Well, this is the deep breath before the plunge.

All nicely settled into our hospital “suite.”  They just told us that my fluids don’t start until tonight at 10:00.  Hmm…then why did you want us in at 10:00 am?  Hospital dynamics will never be understood by me.  In the meantime we have some freedom in our “prison.”

This week is Holy Week, the week commemorating Jesus’ suffering and death followed by his resurrection.  The same week I’m getting the strongest chemo I’ve ever received.  Any delays we had during this process all contributed to this timing.

The significance of it amazed me this morning.  On the heels of that came a deep feeling of unworthiness.  Why should I have the privilege of suffering the same week we remember what Jesus went through?  I’m not saying this to sound pious.  The question burns in my soul and the solidarity is dizzying.  I feel one with Jesus in ways I never have before.  I wonder what He was doing the Monday after His ride into Jerusalem.

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Waiting

Well. Monday is the big admission day. The high dose chemo begins Tuesday. The transplant infusion is scheduled for the following Tuesday, April 2.

The transplant team refers to the infusion day as Day 0 with the following days numbered with consecutive, ascending integers. At least we hope and pray for ascending (not descending) integers (not mixed numbers and for sure not irrational numbers).

This terminology, albeit a bit rigid, feels appropriate. In a sense it speaks of rebirth and renewal. The new beginning–an immune system wiped clean.

In another sense it suggests the trail head at the bottom of a big mountain. Ground zero with Excelsior! on our lips.

Aside from a pain in her back and side which landed her in CT scan machine yesterday, Jean is doing reasonably well. When we described the pain to Dr. Beitinjaneh, he expressed concerned about spleen damage, so he ordered a precautionary CT scan. Thankfully, both the spleen and liver look fine. Actually a bit better than the last PET scan indicated. It seems like we have another case of Mystery Pain, a phenomenon far too common in chemo patients.

So we wait and hold our breath and try not to pass out.

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In the middle of all the countless medical hoops, loops, and procedures we do find a surprising (and refreshing) amount of comedy. For example…

For some time after our “ER Week” Jean had some lingering issues with her vision. Nothing debilitating, just periodic stuff like bright lights, fuzziness, and such. We mentioned this to Dr. B during her last chemo treatment, and he deemed it wise to set up an appointment with an ophthalmologist to rule out potentially serious issues like glaucoma (which–surprise, surprise–can be caused by certain chemo drugs).

Dr. B had indicated to us that the appointment would take place the following week, so we were a bit surprised when that very afternoon a tired-looking young doctor wearing scrubs and the perfectest of 5-o’clock shadows sauntered through the door and dropped his backpack on my cot.

He was there to examine Jean’s eyes, per Dr. B’s request.

Roll with the punches and go with the flow. That’s fine with us.

About a minute later another young doctor (this one clean-shaven and wearing a shirt and tie) strode in.

Welcome. Join the party.

While Scrub rummaged around and asked questions about Jean’s vision, Slick unloaded the contents of his backpack. By the time he finished, a regular arsenal of gadgetry glistened on the bedside table.

The doctors alternated between shining bright lights in Jean’s eyes, muttering instructions to Jean, muttering technical terms and numbers to each other, and scribbling technical terms and numbers on pieces of paper.

Then Slick had to check Jean’s eyes for elongated retinas. To do this he needed to squint through a handheld scope of some sort, aim it at Jean’s eye, then go eye to eye with her for several seconds.

Despite being married for less than two years, I doubt I’ll ever see Jean in such a compromised position. There she was, lying on her back with a stranger’s face plastered against her own. Time after time Slick would pull back, aim, then come back for more until both eyes were thoroughly examined.

Under any other circumstance I would have been compelled to punch him in the face and do some plastering of a different sort. Instead I stifled a horrified laugh and looked out the window. I thought about shooting a discreet photo and wish now that I had.

I couldn’t read Jean’s emotions very well during the assault. Her unexamined eye just bugged straight ahead. She told me later she was feeling a mixture of horror and hilarity. She said she could feel him breathe.

Finally, it was over. As they gathered up their tools they told us that their boss, The Real Ophthalmologist, would be in soon to wrap things up and deliver the final verdict. He was a short, bearded man who talked a lot, they said.

And as if on cue, Dr. Shortbeard-Who-Talks-A-Lot bounced in. A racing, frenzied bounce. He was short and bearded as prophesied. Frazzled, white hair fringed his balding pate. His pants were hiked a bit too high over his expanding paunch. The crooked maroon bow tie bobbed and weaved with every step. He was the perfect picture of a busy genius who lives two seconds ahead of himself.

And he talked. Boy, did he talk. On the way in he noticed the cover of my Time magazine and the article about the high cost of healthcare. The monologue went something like this:

 So let’s take a look at your eyes–‘Why Medical Bill are Killing Us’–look up–well you know it’s not the doctors–look left–the doctors don’t make those decisions–look right–it’s out of control billing–look down–you know once our medical expenses–look left–expand this far beyond our Gross Domestic Product well your eyes look fine any limited peripheral vision any floaters? ok great we’re done…

On his way out the door he asked how long the bright spots last.

Boom. Done.

The unfinished questions and proclamations hung in the air for a bit then collapsed to the floor. The room’s equilibrium slowly returned.

Slick smiled a bit. “Any questions?”

Uh. What just happened?

Once everybody was safely out of range we lost it.

I never did get the doctor’s name until I researched it later. Turns out he received his M.D. certification from the Albert Einstein School of Medicine. He also trained at Princeton and was a Johns Hopkins fellow for awhile. So I’m not worried about his evaluation.

I would still be interested in hearing his opinion on the high cost of healthcare.

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Milestone

Today a year ago we received the initial diagnosis. It feels more like five.

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