Wednesday, January 25, 2012

Day 7: A Wife's Perspective

At Paul's request I'm going to write in his place today, keeping y'all up to date. Yesterday, Day 7, was rather eventful and has left Paul, well, snoring rather loudly beside me here this morning as I type. His care partner for today, Ashley, was teasing him about pulling the paint off the walls ...

Let's see. Yesterday morning started off wonderfully uneventful with 2 bags of blood. That meant Benadryl beforehand and a little drowsiness afterwards. They had installed a continual pain pump the day before and that brought much relief to his mouth pains.

He'd developed the start of a rash that was more prominent yesterday morning. On routine doctor rounds they decided to discontinue the steroid cream and get a biopsy as the rash was more prominent on his chest and stomach. It had also extended some to his legs. (It had already been seen on his back and forearms.) They explained that this rash was a bit unusual so they weren't quite sure what the cause was.

Now for those who are fairly new to this blog, I would just like to point out that the word "unusual" gets used an inordinate amount of times when explaining things to Paul about his particular cancer. It's led me to conclude that his diagnosis of AUL - formerly thought of as Acute Undifferentiated Leukemia - is in fact properly named Acute UNUSUAL Leukemia!  Just sayin'.

Things got eventful after lunch. Though Paul doesn't have lunch per se. He has a continual drip that feeds him. This has allowed his GI track a respite and proven very relieving to Paul. His "virtual food" as Dr Goodman called it consists of all his nutrients, proteins, minerals, and dextrose.
They add a bag of lipids (fats) twice a week. They also check his blood sugar throughout the day, often resulting in insulin shots in the belly. Because he is currently Neutropenic, the areas on his fingers and stomach from sticks and shots are bruised a bit and slow to heal. Not alarming but they add to his ever evolving "I've been through stuff" look. Every once in a while one of his shot areas will continue to bleed a bit because he's also low on Platelets. In fact he'll be getting a bag of those today.

Around 1:00 pm yesterday Paul quite suddenly was overcome with fairly violent chills. He headed for bed. He also clearly had a fever at this point, though his temperature had been rising since the day before. Chills and a fever have happened twice before in this trek of his. Both times were during a Neutropenic stage and both times resulted in a bacterial infection.

He had me climb in bed with him as this brought some relief in times past. The extra warmth helps the chills subside. This, I confess, makes for precious memories for me along the way. As those who have loved ones going through difficult things will attest to, it's just nice to be able to do something! Much of this he has to endure on his own. The Chemo pumps directly into his veins only. No one else's. So, often, the side-effects are his alone to bear.

After about 20 minutes the chills were not really lessening so I got up to text our prayer support. I don't think either of us can fully express the gratitude we feel to God and to the people He's brought us (both medical and non-medical) from all over the world who are going through this with us. For me, one of my greatest comforts lies in the ability to pick up my phone, send one text to Tara (and now one to Dan here in Nashville) and from there my request will be sent to countless people who love us and are committed to praying for us throughout this time. We in turn reap the riches of their prayers.

As I climbed back in bed yesterday, I mentioned to Paul that I texted people, asking them to pray that his chills would stop. After a moment, Paul, a little groggy, said something about it being ok even if God said no. I couldn't really think of a reply to this Brave Heart so I just hugged him and snuggled closer. About 10 minutes later, I had a reply. "Honey," I said smiling, "You've stopped shaking." Coincidence? I don't think so.

The staff did come in shortly after and gave him Demerol along with some oxygen in an effort to relieve the shakes long-term. And perhaps they did. Perhaps it was prayer. Perhaps a combination of both. For this wife, I was just glad they stopped. His fever, however continued to stay up.

Around 3:00 or so the dermatologist, Dr Fowler, (should have snapped a pic) came in for the biopsy.  She, like everyone else, was very personable as well as efficient.  You should see her whip those stitches into place!  A biopsy and two stitches finished before we even knew what happened.  Well, Paul didn't know what happened.  He was sleeping thanks to the Demerol and accompanying anti-nausea medicine.

Dr Goodman, with Fellow Lauren, NP Liz and an observing student doctor. 

Because there's a history with fever/infection, the staff are incredibly vigilant and seemingly several steps ahead of whatever might try and come up.

Cultures(?) came back today, confirming that Paul has the start of a strep/staph infection. They had already started Paul on the appropriate anti-biotic earlier yesterday. He's in wonderfully good hands here.

Knowing I was going to do this update I jotted a couple fun quotes from this team.  Liz, the one with her hands crossed-not a good pic I'm afraid - is a HOOT!  She checked Paul out first thing this morning and was encouraging him to rest today.  Upon his reply of "I don't want to rest, I have things to do" she replied with, "The world will wait for you.  It's been turning a LOONNGGG time...Maybe your brain cells will work even better tomorrow if you take a rest.  Let's make today a HOLIDAY, shall we?! I LOVE an overachiever...except when they think they have to TYPE!"  All of this was met will laughter from me and attempted chuckles from Paul (remember, he has mouth issues.)

Dr Lauren Z, holding the flashlight, (I can only write "Z" because she has a long last name that's hard to learn when one is surreptitiously stealing glances) is referred to here as a "Fellow."  Here's a quick lesson on Doctor Progression.

 (The following info is compliments of Martie.  Nurse/Medical Encyclopedia Extraordinaire!)
Don't ya love the dimples!  To die for!
 There are medical students - still in school. Then Interns - first year out of school.  Still "green." Then Residence - 3-7 yrs working on a particular specialty.  Finally a Fellow.  They've done all the above.  They've chosen their specialty and study in that area for 1-3 years.  At the end of that they take a very specialized test and become an attending doctor upon completion. (In keeping with Paul's blog, for others coming along behind him to do a transplant, I'm including all this info.  Tamara we are following your progress and rejoice at your 14/14 match!!!! Who is like God?!)

Here on the transplant teams we don't see medical students, but there is a Fellow.  (Medical students observe during morning rounds but they don't interact with us.  Well, they smile when they enter and leave the room...)  Anyways, the transplant team doesn't like to have ever-changing staff.  They like the constant throughout the transplant process and I have to agree that it's nice.

So back to Dr Lauren, the Fellow.  She comes in from time to time with a very winsome smile.  She's very thorough and was in our room almost immediately upon learning of Paul's chills.  She introduced us to a term they like to use around here.  She asked him, "Are you shakin' and bakin'?"  (In reference to the chills and fever)  As I said, the entire staff here is as pleasant as they are efficient.  I would be remiss to not mention Dr Goodman.  She's straight-forward, completely on top of things, and brings all of this to our bedside with one of the loveliest smiles of them all.  She has been the one (I think) to set the tone of, "Let's completely stay ahead of the game as much as possible."  Very pre-emptive and I LIKE IT!

Hopefully Paul will be back here tomorrow and can write in more detail about Vance and Martie, the amazing nurses who've carried him through this last rough patch.  Though this patch may be a blur to him.

His "I've been through stuff" look
 Last night Vance, the night nurse gave me a "heads up" that they would move him to ICU should his continued fever go up and his blood pressure go down.  Just as a precaution.  I sent a text to my prayer support and must have fallen right to sleep.  We both woke up this morning to Paul's temperature back to normal and Vance teasing Paul about remaining asleep even when she had him sit up for something. We slept well and he's feeling much better this morning, though his temp is teasing us, fluctuating between 97-99.  Still, it's all good!

New comfy sheets
Our "Vector" having fun where she's staying

Not just hanging on, but actually THRILLED TO DEATH!


  1. Thanks Hannah! You covered that well. Bless you Both! You are in the forefront of our thoughts as we go through our days and in our hearts and prayers throughout our nights. Your faith and courage is inspiring.
    Much respect and admiration!
    Nathanael & Rachel

  2. Great job of standing in on the updates, Hannah!! Thank you so much. We are carrying you both, as well as your Nashville friends (which includes doctors and patients), in our prayers. It is good when we get the texts to pray for special help from God. I really feel God is holding us a little closer in His Arms as we find our way to remain steadfast in this 'Adventure'. You are great on the frontlines, and we miss you both! But God's touch on it all is 'rippling' all over this world. Keep up the good works! We love you so much!
    Mom and Dad

  3. Dearest Ones: We love you sooooo much! Our kids pray for you every day....Palal especially prays every day for your healing and for the doctors and nurses. Thank you for keeping us updated. I read it all to to the kids. They are always wanting to know how you both are doing. Love, John & Chavvah

  4. OK. The Dragonfly picture needs to be the new logo for "Thrilled to Death". Very Appropriate!
    We are all holding you both in our hearts every day.

  5. Thank you to all of you. We feel over-taken-care-of. Even the strangers I meet, the new doctors, nurses, patients ... everyone's nice. It's overwhelming. I've been wondering what to say when people ask, "How are you?" How does that apply in my situation? It's kind of relative, isn't it?

    So I think I need to borrow Dave Ramsey's answer. "Better than I deserve!"

  6. How does anyone do this without belief in God and folks who pray?! God bless you both

  7. I don't know how they do it. Braver than me. That's as much true for my wife as me. The caregiver bears a wearying responsibility. I'd rather be the patient.

  8. Whoa! Just saw this last comment. We must make a good team because I, for the record, would rather be the caregiver!!!!!