Wednesday, April 19, 2017

DAILY NANCY UPDATE #66

Greetings. 

This is the sixty-sixth in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

If you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture and follow the prompts!

BREAKING NEWS

SHE'S BAAAACK!


Nancy has been in a hospital room at City of Hope since last Friday night. And the past six days have been a frightening emotional odyssey for all of us... caused by what her COH doctors believe was a "chemically induced infection" after her last intrathecal (spinal) chemo at UCLA. High fevers, constant migraines, and rampant hallucinations caused by not only the infection, but the powerful medications used to fight it. 

I can tell you that I've never experienced anything quite so upsetting... 
AND IT WASN'T EVEN HAPPENING TO ME. IT WAS HAPPENING TO HER!

But suddenly last night, as they prepped Nancy for general anesthesia so they could perform an MRI, CT SCAN, and EEG's without her endangering herself in any way... she suddenly began to come back "online." She was able to talk to me. And smile. Understand where she was. And even joke with the doctor just before he put her under.

And since then... not only have the fevers and migraines gone... but the tests have all come back normal. That's right, folks... it appears the Sunshiny Superwarrior Goddess has once again flexed her mighty muscle and cleared the biggest unexpected hurdle of her leukemia treatment so far.

As of today, she was her same old (albeit tired and a tad shaky) self, cracking me and a couple of her dear friends up in the room all day-- not to mention blowing away the doctors and nurses-- who had only met her "Hulk Smashing" alter ego. 

We'll be doing some conferring with Dr. Forman and his City of Hope team tomorrow about when she'll be cleared to come home. But for now, please know that all your good thoughts and prayers... along with her indomitable will to survive and thrive... have finally brought an end to a very scary ordeal. 

WE LOVE NANCY, and... 

ALL IS WELL!

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Remember, even if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.


Or, if you just feel like keeping your fluids to yourself and sending us some food instead, that's fine, too.

Monday, April 17, 2017

DAILY NANCY UPDATE #65

Greetings. 

This is the sixty-fifth in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

If you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture and follow the prompts!

BREAKING NEWS

The last 24 hours have been among the longest in my life.


Based on the barrage of tests they've done, it appears increasingly likely that Nancy contracted some kind of infection during her last spinal chemo procedure at UCLA. And while the prognosis is good... the drugs they're using to fight the infection and manage her migraines and nausea have also rendered her temporarily incoherent.

When your wife looks right at you... without any idea who you are... and fights you and the rest of the nurses and doctors trying to help her for an entire day... it is an absolute waking nightmare. 

And that, I'm afraid, is all I've got left to share tonight. Please think good thoughts and send healing prayers to the Sunshiny Superwarrior Goddess, who is currently cast adrift.

WE LOVE NANCY, and... 

ALL IS WELL!

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Remember, even if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.


Or, if you just feel like keeping your fluids to yourself and sending us some food instead, that's fine, too.

Sunday, April 16, 2017

DAILY NANCY UPDATE #64

Greetings. 

This is the sixty-fourth in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

If you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture and follow the prompts!

BREAKING NEWS

Unfortunately, Nancy is still at City of Hope Hospital, fighting some type of infection that's causing her to suffer high temperatures, terrible headaches, and nausea. The good news is, most of her blood work looks normal. No white cell spikes or anything that suggests relapse of any kind at this point. And her immune system numbers are strong as well. But we're still waiting on results from several culture studies that will come in over the next couple of days.


Meanwhile, her doctors have begun to speculate about whether or not the infection might have been caused by the lumbar puncture she had last week at UCLA. Trouble is, the only way to determine that is by... you guessed it... having another lumbar puncture

So God bless her, Nancy once again endured spinal tap #7, and those fluid samples are now also being tested. And the docs have also given her some stronger pain meds to keep the migraines at bay and let her get some much needed rest.

Thankfully, our daughter Clem came home last night for Spring Break-- so at least her presence has helped us all have some version of a Happy Easter-- and seeing her walk into the room today certainly brought a smile to Nancy's face.

Your healing thoughts and loving prayers are particularly appreciated right now. We really want to bring the Sunshiny Superwarrior Goddess home. 

Oh, and one more thing. I'm loathe to post it, because everyone has already been so unbelievably kind to us over the past three months. But because so many people have texted or called to ask-- here's the link to the meal train website that one of our dear friends put together.


Thanks again for all of your heartwarming generosity and support.

WE LOVE NANCY, and... 

ALL IS WELL!

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Remember, even if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.

Saturday, April 15, 2017

DAILY NANCY UPDATE #63

Greetings. 

This is the sixty-third in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

If you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture and follow the prompts!

BREAKING NEWS

Oh, man. Rough night.

After spending Thursday getting tests at City of Hope, Nancy woke up feeling kinda punk on Friday. And by Friday evening, she had a splitting headache and was running a fever, which is probable sign of some kind of infection. So we reached out to Dr. Forman, and when her fever tipped past 103-- he told us to immediately pack up and get to the hospital.

Which is why last night, our extremely patient patient returned to COH. 


Unfortunately, they were a bit shy on hospital rooms when we arrived. So we were stuck in the ER from 8:30pm until they finally got her admitted at 1:30am this morning. Then once we got her into a room, of course, they insisted on doing a full barrage of tests. So she finally drifted off with a fever and a splitting headache at around 2:15.

I drove home and fell into bed at 3-- then got up and returned to the hospital this morning to sadly discover she still had a migraine and a fever. So she's now been hit with some morphine and has just peacefully, painlessly drifted off as I type this in a dimly lit room in Duarte.

And here's where I have to lean on a quote our friend Julie (an amazing leukemia survivor herself) just shared with me from another patient she knows who is a former Navy SEAL. An expression he learned during his training also works well for beating this cursed disease:

"They can make it harder, but they can't make it longer."


Meanwhile, our daughter Clemmy comes home from college for Spring Break tonight-- so our plans for a big celebration have been unfortunately postponed. But with any luck (good thoughts and prayers sincerely appreciated), the Sunshiny Superwarrior Goddess will be home herself before the end of the weekend.

WE LOVE NANCY, and... 

ALL IS WELL!

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Remember, even if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.

Thursday, April 13, 2017

DAILY NANCY UPDATE #62

Greetings. 

This is the sixty-second in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

If you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture and follow the prompts!

BREAKING NEWS

Okay, I know it's been a few days, and there's a lot of news to share, so I'll do the best I can now to catch everybody up. 

In short, there have been lots of continuing appointments and tests over the last week, and yesterday, Nancy endured another full day of treatment at UCLA.


We're talking blood draws, chemo, another lumbar puncture (!?!), and a full round of intrathecal (spinal) chemo as well. So by the time she got home, she was understandably beat.

But this morning-- she's energized. Why? Well, let's just say we've decided to focus on HOPE. 


CITY OF HOPE, to be exact. After a great deal of thought, research, and soul-searching-- Nancy has decided to shift her care (and impending bone marrow transplant) to City of Hope Hospital in Duarte, California.

Truth be told, UCLA was incredible-- and her doctors there (especially Dr. Schiller) have been absolutely amazing over the past three months. But for a whole host of reasons, some experiential, and others instinctual-- Nancy just feels like this is a change she needs to make right now. Of course, she reserves the right to go anywhere and see anyone it takes to win this fight before it's over-- but right now, a good dose of HOPE seems like exactly what the doctor ordered. 

Naturally, she's already hit the ground running. Today Nancy had 15-- count them, FIFTEEN vials of blood taken in their labs. Then consults with her new lead physician Dr. Stephen Forman (City of Hope's bona fide oncological rock star and an international expert in leukemia) along with a great nurse practitioner who wasted no time laying out the gritty and slightly overwhelming details of her impending transplant.

So while we're on the topic-- here's the update on all that. 

First, we both want to thank everyone who has registered and/or been tested in the hopes of being a viable bone marrow match. That any or all of you would be willing to give so generously of your bodies, hearts, and souls is truly one of the most beautiful displays of love we've ever witnessed.

But fingers crossed-- we think we may have identified a perfect match donor. 

Although it's an anonymous member of the international bone marrow donor bank-- here's what we do know: he's a 20 year old man (yes ladies, it turns out young men are the best possible donors for women fighting A.L.L.-- go figure) who happens to live in Israel (Chag Sameach!) and whose blood apparently meets all the ancestral and hematological requirements necessary to give Nancy the very best chance possible of showing her acute lymphoblastic leukemia the damn door. 

Whoever he is (we can't even make an official request to find out until she's been in remission for a year) - God bless him. Because after already having his blood test added to the donor bank, he's now been located and has consented to a full physical and second round of tests to make sure he's in tip-top shape. Then if all goes well-- he'll check into an Israeli hospital and have a fair amount of his precious blood and marrow collected-- which will then be overnight shipped to Los Angeles for the Sunshiny Superwarrior Goddess. We're hoping all of this will take place around the first of May.

But lemme be crystal clear. This is far from a done deal-- so we don't want to discourage anyone's desire to be tested (see information below), because any number of things could go wrong between now and then-- forcing us to begin our search all over again. 

Nevertheless, in the name of good old fashioned blind faith optimism-- your extra special thoughts and prayers couldn't be more appreciated right now.

WE LOVE NANCY, and... 

ALL IS WELL!

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Remember, even if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.

Wednesday, April 5, 2017

DAILY NANCY UPDATE #61

Greetings. 

This is the sixty-first in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

If you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture and follow the prompts!

BREAKING NEWS


DO NOT READ THIS. 

Seriously... if you're squeamish at all... or God forbid, have just stumbled onto this site while trying to deal with your own leukemia experiences... just PLEASE DO YOURSELF A HUGE FAVOR and skip to the next blog entry.

I'm about to get graphic. 

Why? Because it's been a really long day for Nancy and me both-- so I need to get these images out of my mind by putting them here or I'll never be able to sleep.

Okay, ready?

LAST CHANCE TO MOVE ALONG...

Fine. Here goes.

See this? This is a dipstick. If you've ever checked the oil on your car, you'll immediately recognize it. It's a long steel strip which fits into a curved pipe that leads to your oil pan. And every once in awhile, you pull it out to eyeball the oil levels.


So why am I bringing up basic auto maintenance?

Because every time I have to watch Nancy suffer through a spinal tap, it's all I can think about. Only let's not use the term "spinal tap" any more. It sounds way too fun-- like the great rock and roll mockumentary that first turned comedy up to 11.

No... let's call this hellish procedure by its much more clinical name.

LUMBAR PUNCTURE.

Here's what happens. We go into an ice cold Radiology room at UCLA and Nancy has to lay flat on her stomach under a big X-Ray machine. And I put on a lead suit so I can sit at the end of the exam table to hold her hand.

Then a physician comes in to shoot a few images of her back, which pop up on a nearby monitor. And let me take a quick minute to expound just a little on what I mean by "physician." Because this is such a delicate and painful procedure (the second one she had is still plaguing her with lower back pain a couple of months later)-- our primary oncologist has specifically requested that only an ATTENDING DOCTOR OF RADIOLOGY be permitted to perform it on Nancy. See, there's a whole hierarchy of physicians in a teaching hospital like UCLA.  From the bottom to the top it basically goes: MED SCHOOL STUDENT, REGISTERED NURSE, NURSE PRACTITIONER, DOCTOR, FELLOW, ATTENDING PHYSICIAN, PROFESSOR, DIRECTOR. And let's just say Nancy's learned the hard (and painful) way to tell the difference between their experience levels when it comes to a lumbar puncture.

Anyway, then they clean and sterilize her back-- taping off the puncture area with surgical cloths. And the initial discomfort comes from a local anesthetic the doctor administers to the base of Nancy's spine. That's usually the first hard squeeze I get on my hand.

Next, the doctor takes something called a SPINAL NEEDLE-- and using the x-ray for proper positioning, slowly inserts it through Nancy's skin and between her lumbar vertebrae. At this point, I'm trying as hard as I can to help her focus on her breathing and stay still.

Then, once the needle has passed through several layers of spinal membrane (?!?!)... the doctor has to check her dipstick. Specifically, there's a tiny "stylet" withdrawn from inside the spinal needle, which allows the physician to check for cerebrospinal fluid. In other words, if you see little droplets of clear liquid-- you're in the right place.


But if you don't-- and here comes the biggest pain of all, my friends-- you have to reinsert, withdraw, jiggle, and repeatedly reposition the needle until you finally hit the mother lode. 

So while that's happening, I get to watch my wife jerk, cry, and clutch my hand in absolute misery.

After that, they withdraw several microliters of fluid. Then use a different syringe to administer what's called intrathecal chemo that protects her spine and brain from any potentially opportunistic cancerous invaders.

Running a barrage of tests on Nancy's cerebrospinal fluid will allow her team of doctors in the Oncology Center to get a much better idea of how her fight against A.L.L. is really going. 

But for lack of a better way to describe it... lumbar punctures are like watching some kind of sick and twisted David Cronenberg movie... only it's not a movie. It's real. And it hurts like a sonofabitch. 

What's more, Nancy's had to endure this torture FIVE TIMES ALREADY. 

Sometimes it's a breeze... over in seconds. But other times, like today... it's interminable. 

And when it's finally over-- the poor woman has to lay flat on her back for the next 6 to 8 hours (including in the back seat of my truck on the way home) in the hopes of preventing the most common side effects of intense, migraine level headaches and nausea.

Thankfully, so far today/tonight, she seems to be out of the woods where that kind of after-ugliness is concerned. And better yet, we THINK she's only got one more of these things ahead of her on the schedule.

But man, lemme tell you, it's HORRIBLE to witness. And far more horrible still to experience. I really hate like hell that she's having to go through all of this. And I apologize for TMI. 

But sometimes it really helps to write this kind of nastiness down in a selfish effort to try and let it go. 

Meanwhile, your continued thoughts and prayers for Nancy's recovery are genuinely appreciated.  

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Her doctors are closing in on a few promising prospects-- but until we nail one down-- we'll take all the help from you we can get. Remember, if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.


WE LOVE NANCY, and... 

ALL IS WELL!

Sunday, April 2, 2017

THE SUNSHINY SUPERWARRIOR GODDESS SPEAKS!



AND NOW A FEW WORDS FROM THE SUNSHINY SUPERWARRIOR GODDESS HERSELF...

I apologize yet again for not blogging sooner. In my head, I’m blogging daily. I’m telling y’all about all the wild characters I’ve met at the hospital — sharing the incredible meals that have so generously been dropped off — discussing the inspiring stories of courage I’ve heard — and then occasionally, I’m telling you about the shitty days I’ve had where I spend all day moaning and groaning, tossing and turning in bed. 

And then suddenly — it's a month later and I haven't written a word. I mean - seriously — I can hardly believe it’s been 3 months since my diagnosis. Nearly 90 days! One quarter of a year. That’s crazy talk!

But today I feel terrific, so I figured I’d try and get this train back on the track.

Before I go any further, can we discuss my exhausted husband?  Poor Trey is carrying the weight of the world on his handsome shoulders.  Not only is he tasked with the responsibility of taking care of me, and taking care of the kids, and working — but he’s promised all of YOU to blog daily and when he doesn’t, people get worried. 

BUT DO NOT FEAR! DO NOT FRET! And I encourage you not to send panicked emails to him. If he doesn’t blog, it’s just because the hour, or the day, or the week, has gotten away from him. Perhaps I needed more love that day. Or the kids had no rides. Or he was putting out fires at work. So don’t panic, know that at some point during the month, you’ll hear about our progress. And that more than anything - we both feel your love and are incredibly grateful for it.

This week in the land of Leukemia, things got more real than ever. 

The bone marrow cooridinator had the two of us into her office to sign all the necessary paperwork that must be discussed before a bone marrow transplant... and it’s mind-boggling.  

Here’s my quick, sarcastic recap of what they said:  

"Okay, we're just gonna give you a list of all the ways you probably won’t, but could die during a bone marrow transplant. Here are all the terrible things that probably won’t, but might happen to you, during a bone marrow transplant.  And just when you think that’s all you need to know, let us remind you that you’ll be in the hospital at least another 30 days, followed by another month of full time care. You’ll probably end up returning a couple of times with a fever. You’ll lose a bunch of weight. Oh, and you’ll probably get horrible mouth sores, followed by 6 months where you’ll be carrying around a bag of meds that you must have with you 24/7.  Otherwise - we’re very excited to have found a possible match and are waiting to hear back from the donor.  Fingers crossed! Congrats!"

So Trey and I drove home in silence, quietly attempting to digest all that information. On the one hand, we are beyond thrilled there is a possible donor (even though the donor has yet to fully agree to participate), but on the other hand… it’s an enormous amount of life or death stuff to think about. 

And while we process all that information, my treatments continue. I will have more intensive chemo, followed by full body radiation — and all the while — I am talking to experts and researching other possible methods of putting me into remission... because this is a constantly changing disease and there are several different protocols available all over the country. 

That about covers it for now. We love you and thank you again for your words of wisdom, prayers, emotional support, positivity, emails, texts, cards and food.  Did I mention food? They keep us going. Truly. 

XOXO

Nancy