Timing: Treatment, Tests and Transplantion

 First some good news:  We just got off the phone with her (Sunday morning, 4/30).  She’s on an anti-nauseant medicine (Zofran) which is keeping the nausea level down, but she has a swollen tongue and has a gun/metal sandpaper mouth. “Icky” was the word she used.  Despite that, she’s feeling surprisingly good given what she’s going through.

Her blood pressure this morning (oh to hell with hipaa rules) was 100 / 61 and mapping at 74.  Last night it dipped fairly low, triggering some visits from nurses to retest,  but it rebounded this morning. 

Some of the effort with paperwork has paid off.  Hours filling out forms, phone calls, waiting on hold, being hung up on .  Imagine laying in a hospital, in the battle of and for your life, and being hung up on.  By people who are supposed to help.

In any case, some positive news about FMLA,  some on insurance, so effort, patience, determination and help from friends is starting to pay off.

Leigh was with Kristina for much of Friday, Shannon on Saturday, and Julia set up a new ‘google forms’ calendar to schedule visits.  Contact Julia at Jula.Cain@Gmail.com for access to the google docs calendar. 

In addition, Leslie showed up and gave Kristina a reiki healing session.  Kristina's oncologist walked in and admitted "wow, this is a first for me!".  

Treatment, test, Transplant.  1, 2, 3.  It sounds so easy.  Chemo, the treatment, bone marrow aspiration, the test, followed by a bone marrow transplant.

There's nothing ‘easy’ about any of this and the devil is not only in the details, it’s the timing and the coordination surrounding the sequence of events that is frustrating.  It’s almost inevitable that there’s frustration and uncertainty.  On the one side you have the Fred Hutch Cancer Center, that brought Fred Hutch and UW Medicine together.  An incredible array of professionals.  This is what they do.  They’ve seen thousands of cases and have a system, a process to coordinate treatments and transplants.  Different disciplines are aligned with each taking part in a patients treatment.

On the other side you have a single women, in her third battle of Leukemia who has pretty good knowledge of the medical side of things, but from her own viewpoint and history.  Dare I say strong willed and outspoken (I can hear Kristina snicker when she sees this).    The professionals rely on medical studies over a broad range of cases and medical understanding evolves over time with new studies.  Kristina knows her own body and her two past battles with this devastating disease.

The inevitable frustration is the different viewpoints and some degree of uncertainty, or at least uneven communication, with the ‘powers that be’.  One from a professional point of view involving hundreds of patients, the other intensely personal.

The chemo treatment is done.  The G-Clam is a 5 day protocol and now the blast cells should be all but gone.    The aspiration, the test, though, can’t happen too soon – the Chemo needs time to do its thing, and cells need to rebuild a bit -- but it can’t be too late either.  The blast cells may grow fast, but the hope is that the chemo will put into temporary remission so the transplant can go forward.

Then there’s the timing between the test and the transplant.  Transplants take time to arrange.  If the process is linear, wait for the test then schedule the transplant, precious time is consumed between the test, which is only a snapshot of the blast cell count at one point in time, and the transplant.  If too much time elapses, the success of the transplant is compromised as those fast growing blast cells have become too numerous.

Right now, Kristina is in the hospital for 2-3 more weeks.  She hit ‘nadir’ on the 27^th.  That’s the low point of the chemo treatment having no white blood cells.  Zero.  In an earlier post we referred to the immune system asking ‘friend or foe’.  When nadir is hit, there’s no one to even ask the question.  Kristina is now at extreme risk to any infection. 

Now she’s in cell recovery mode and the hope is that the healthy cells will recover, and the blast will be gone.  That's the best case.  If there are remaining blast cells, the number must be under 5%, for a 'go' on the transplant.   The test is currently scheduled for May 24^th and the temporary transplant coordinator (Kristina’s assigned coordinator, who she knows, is on vacation) told Kristina that once the test is done, then they’ll schedule the transplant.  Kristina is pushing for the coordination to begin sooner. If there are some blast cells, then the % will go up as time passes -- and the shorter time between the test and transplant the better.

That’s the current battle – timing.  And Kristina is battling.  Boldly.

Visitation, good days and bad days, and how transplant donors are matched

 

So today (Wednesday) was a tougher day.   While the hair is still firmly attached, the clock is ticking.  Nausea waves slosh around and the focus is fading.  Chemo doing what chemo does.  It’s tough.  She’s been there before, knows what’s coming, and still, when I chatted with her for a few minutes, she seemed to be pretty positive.  But it comes and goes in waves.

Shannon was with her much of the day getting paperwork done.  Greg was going to bring some soup.  Julia Cain (jula.cain@gmail.com) (both spellings are correct) has set up the protocol for visitations.  Ping Julia via email and she’ll send you a calendar app were visits can be coordinated.  There’s a feature of the calendar noting good days and bad days.  Life is imperfect.

So now for a little history and some good news:  The donor matching process……

Matching patients to donors is complex and has come a long way since Kristina’s first transplant back in 2007.  The process is far more than simply matching blood types.  The match is made based on HLA (human leukocyte antigen) tissue types.  We all have HLA proteins and they act as markers within most cells in our body.  Our immune systems uses these markers to recognize which cells belong in your body vs those that do not. 

When the immune system yells ‘friend or foe’, a close HLA match is likely to generate the ‘friend’ response.  Stand down you white blood cells. A 'foe' reaction is likely to generate a graft vs host reaction (GVHD), a form of possible rejection.  But more about that later.

In the ‘old days’ (80’s) a 4/6 or 6 / 6 match  was thought to be ok to go forward.  Later on the ‘gold standard’ moved to 8/8 to the current 10 / 10 match protocols.  While that’s the generally accepted match now, there’s also a 12 / 12 match indicating an even better match.  If we want to go all technical,

matching for the HLA-A, -B,- C,- DRB1 and -DQB1 loci is referred to as a 10/10 match, when HLA-DPB1 is included it becomes a 12/12 match. Matching for HLA-A, -B, -C, and -DRB1 loci is an 8/8 match.

Short story is that given Kristina’s markers, there’s a sizeable pool of 12 / 12 matches, when really only 10/10 is needed

This is pretty dense reading, but a pretty good article from the national library of medicine outlining the matching process and different protocols followed by various countries. 

While this is good news, the focus of the G-Clam treatment is to get her blast cell count down – to 5% or under.  That needs to work and Kristina needs to be in sufficient health to accept the transplant.  Significant milestones remain to get to the transplant stage.

"HIGHLIGHTS" of the past few days

 

Kristina was updating her “Highlights” of the past few days.  The quotation marks are hers because, well, “highlights” just isn’t the right word.

First the course of G-CLAM Is over.  It’s a 5 day course of chemicals with long names designed to crush the number of cancer cells.  It also has a wide range of side effects including increased chance of infection and oral sores.  Already Kristina is reporting changes in her mouth – feeling / tasting like sandpaper and gunmetal (lovely). 

Hair loss is likely to begin, but she tugged on it this morning.  Firmly attached to the noggin (yay!).

The hospital routine, G-Clam treatment and sleep are not compatible bandmates.  The G-Clam treatment and incessant monitoring at all hours of the night make for long ass nights with little restorative deep sleep.  I keep thinking of trying to sleep on a pounding small boat sounding like it’s trying to tear itself apart and 3am watches during my 2 R2AK rides and by day 5 the cumulative sleep depravation makes for a zombie like existence.  The similarity breaks down pretty quickly, but sleep deprivation alone, without the compounding effects of Chemo and drugs is miserable and debilitating. 

Added to all this is the endless paperwork and phone calls trying to get through the personal admin stuff for an extended leave from work.  The list is slowly getting whittled down, but it’s tedious, much needed, and worrisome.

Then there’s the blood pressure thing.  Her diastolic pressure has dipped to 44, but today was around 54.   She’s battling to keep it above 60.  Hydration is one of the keys.

On the plus side, the donor situation is looking positive.  It sounds like  suitable donor has been found and her PRA (Panel Reactive Antibodies) panel came back negative – a good thing.  Kristina has had over 100 blood transfusions and the risk is she may have antibodies that would dim hopes for a transplant.   But she doesn’t.  And a likely donor has been found.  More on this tomorrow with a deeper dive on how transplant donors are matched with recipients.

All this combined – paperwork, blood pressure, sleep deprivation, chemo side effects, etc are a lot to battle.  Encouragement is much appreciated.  She says it’s been lovely see friendly faces.

Her mailing address is (remember, no flowers – but paper ones are ok)

Kristina Southard Rm 8448

UW Medicine, 8SA Medical Oncology

1959 NE Pacific Street

Box 356188

Seattle, Wa 98195-6188

 

Keep the positive energy flowing as she battles boldly

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HOSPITAL ADMISSION DAY

 

Yesterday was ‘moving in’ day.  It’s getting very, very real.  To date it’s been talking about test results and treatment options.  That pivoted yesterday with the insertion of the Hickman Tube.  The shot on Wednesday (the G in G-CLAM) was a growth hormone, the rest of the alphabet soup is delivered via the Hickman tube.  And it started last night at 8:30.  And again at 12:30am.  Another at 2:30am.

Yesterday evening Kristina and Shannon gave us a virtual tour of the room.  It’s big and has a ensuite bathroom.   It’s the Four Seasons of hospital rooms.  Last night Shannon and Kristina were busy decorating it.  But it’s still a hospital room with IV racks, beeping monitors, etc.  It does have a dandy view of the west end of the Montlake Cut.  Pro Tip:  If you transit the cut, draw a line between the finish line for the UW crew races and about the center of the SYC docks that face the cut.  She has a great view of that area.  If she knows you are coming, she can see you.

Visitation is allowed, but only 2 at a time and Kristina is still figuring out the nurses.  As she puts it, ‘getting to know the cool ones’.  There are significant concerns about immune systems, or better put, lack of them on that floor in general and Kristina in particular.  For example, no real flowers are allowed.  Paper ones are. 

Her mailing address is:

Kristina Southard Rm 8448
UW Medicine, 8SA Medical Oncology
1959 NE Pacific Street
Box 356188
Seattle, Wa 98195-6188

 

The first few days of the Chemo regimen are tough.  Then it gets far worse.  Her ability to track and stay alert will go downhill.  An old friend of mine called it ‘Chemo Brain’.  Chemo kills the fast growing cells and taste buds are a casualty.  Another old friend of mine commented during our weekly lunches together it ‘was like munching on cardboard’. 

 This will be a rough ride but positive wishes and energy are needed right now.  Kristina adores her ‘tribe’ as she puts it and we have the chance to hold that adoration up to a mirror back to her.

SPONTANEOUS SCHEDULE SCRAMBLE

 

SPONTANEOUS SCHEDULE SCRAMBLE

That’s how Kristina described her Wednesday.  The not so calm day before the storm.   Before going to the hospital for a MUGA scan (more on that in a bit) Kristina crossed swords with a neighbor who wanted to cut down a tree that formed some privacy in her backyard.  By Kristina’s description, that bit of ‘normalcy’ was almost a welcome relief from what’s to come.

Kristina dashed to the storage room to pack away skis and winter gear then went back to the house to meet Shannon, who would accompany her throughout the day at the hospital.

First, some good news.  She didn’t need a platelet transfusion, but her ‘crit’ (short for hematocrit) level was too low so she’ll need a red blood transfusion today (Thursday) when she enters the hospital.

Back to the MUGA scan.  It’s short for a “Multigated acquisition” imaging test that helps determine how well the heart is functioning.  The internal images it takes of the heart checks whether blood is being properly pumped into the lower chambers.  A small bit of radioactive material is injected through an IV line and the scanner follows that material through the heart.  Pretty cool.

Short story:  Kristina has a good heart (but we all knew that already, didn’t we?)

And despite the IV, the radioactive stuff, etc, Kristina fell asleep during the MUGA scan. 

Then came the first shot of the G-CLAM chemotherapy delivered subcutaneously.  Right in the belly (ouch – but that’s me talking). 

There was some good news on other fronts.  Her vacation and sick days may extend her medical coverage for a while longer (still waiting for details).   There are significant other expenses, but that was welcome news.

She was back home around 6pm with instructions not to eat anything after midnight.  Today (Thursday) will be hospital day 1.  The Hickman tube will be inserted and she’ll get a transfusion of red blood cells.  It’s the start of the real treatment.  Round 3. 

 

 

 

WHALES CONCLUDE A HECTIC WEEK

 

First order of business.  The ‘Go Fund me’ site is live.  Click here.

Last week was quite the week for Kristina.  Chock full and exhausting.   If she wasn’t on the phone she was going to appointments.  Legal, medical, financial, insurance, and oh yeah, there’s that sloop tavern thing.  It’s all exhausting, compounded by very real fears of what the future holds. 

Her core care team has also been busy.  It’s awe inspiring to see Kristina’s friends kick into gear.    Kristina is surrounded by caring doers.  These people get stuff done.

One of the challenges for me as the writer is I don’t know all of Kristina’s friends, so I know I’m going to do a poor job giving credit where credit is due, but I have a hunch they don’t really care about that.  They care about Kristina, are mobilized and single minded with that mission.

Kristina did have a set of appointments on Thursday and learned a few things.  First, she didn’t need the platelet transfusions she was warned she may need.  The blood work is coming back better than expected, so for now, no transfusions.

The second thing was the Chemo itself.  It’ll be slightly ‘dumbed down’ as one of the ingredients to the cocktail is something she’s already had too much of in the past.  Kristina took this as bad news in that it may not be quite as effective, but her medical care team pretty much said this is how it’s going to be.

Third, the date for the Hickman tube insertion was pushed one day to this Thursday, the day she’ll go into the hospital.

What hasn’t changed is the gravity of the treatment, the length of the treatment and the fact that if all goes well, this will be a marathon as opposed to a sprint.

As the week came to an end, Kristina was exhausted.  She and Christine had taken a road trip last Sunday to Vancouver,  then non stop phone calls and appointments.  Thursday was a long day in the hospital going over every aspect of the treatment options, goals, and the sequence of events.  Friday was another long day (totally in pajamas by the way) on the phone.   Then came Saturday.  What else, a cruise on the boat. 

Leigh, Kristina and I departed Shilshole around 8:30 and had a great downwind run up to Langley.   We sailed quite a bit with only the jib, the heater going the whole time in an enclosed cockpit.  Low stress and perfectly comfortable.  The only disappointment was we didn’t see any whales.  Langley had their ‘welcome the whales’ parade, but the whales didn’t welcome us!

Saturday night was supposed to be a potluck but rain forced everyone inside with different groups dining on different boats.  We had a great time on Cambria with dinner served to, well, a lot of people.  Some folks had driven up from Seattle simply to be with Kristina.

After everyone left, I made up some ‘heated beautifuls’.  Half Grand Marnier, and half Courvoisier, served neat over a glass of hot water.  Smooth, soothing, the perfect end to a good day on the water.

The following morning we had coffee in the cockpit and cleared the marina at 8:42.  One minute later, my friend Sally, who, with her husband live on Camano Island right across from Langley, texted ‘two whales, in front of the house northbound’.  Perfect.  15 minutes later we were well positioned and killed the engine.  We saw, and heard, 3 or 4 gray whales casually working their way up their way up the western side of Camano.  We think they were feeding (what else would they be doing, watching Netflix??), slowly swimming and blowing their way north.

With the close encounter of the whales a warm memory, we headed south into increasing wind and rain.   Pretty soon there was spray over the bow and driving rain was slamming into the boat.  What did we do?  Put on foulies and confront the weather?  Au contraire.  Leigh went below to serve mimosas, we turned on the windshield wipers, and cranked up the heat as Kristina’s quiche’s emerged piping hot from the oven.  And so goes Cambria’s way of dealing with the weather.

Was it a perfect weekend?  No.  Life deals serious issues to us.  And we need to square our shoulders to them and confront them.  By her own count, Kristina has been to 58 countries.   She confided to us she’s lived a great life and her mantra of ‘live life boldly’ has served her well.

On the way down, the talk briefly turned to the serious.  She’d be OK if everything came to a crashing end next week. She said she’s had a good run.  But is she done yet?

Oh hell no…..

This week marks the real start to the treatment.  She’ll go into the hospital to begin treatment on Thursday. 

Editors note:  We don’t plan on updating every day.  Probably a few times a week, but that’ll be based on circumstance.  Kristina’s ability to communicate will decline once the Chemo starts.  We’ll try to keep all informed as she ‘battles boldly’.

Mark

ROUND THREE HAS BEGUN

 Fuck Cancer.

So yeah, something is going on with Kristina.  She’s known this could come, but it’s still a shock.  A few weeks ago she found herself out of breath walking up the hill above the Langley marina.  No big deal but at the time she thought ‘Jeez, am I that out of shape’?

Then there were a couple of minor ‘ocular migraines’ in the past couple of weeks but she didn’t think much about it.

Last Wednesday she went in for a routine blood draw in advance of a planned check up.  Then the results started coming in.   Her CBC blood levels had dropped significantly.  From her previous two bouts of Leukemia she knew what bad numbers looked like.  These were worse.  Way worse.

Blast cells are young Leukemia cells that start to take over the bone marrow preventing normal blood production.  The early stages of this has been considered ‘myelodysplasia’, previously thought to be a pre-leukemic blood disorder.  When blast levels get to 19-20%, medically it has crossed over to AML – Acute Myeloid Leukemia. 

In her previous 2 bouts with Leukemia, (2007 and 2014) Kristina’s blast cells were 19% and 19.7%.  On Tuesday she was looking at 27% blast cells. A terrifying number.

She knew – or thought she knew – given her previous bouts of Leukemia and a damaged bone marrow environment that numbers this high would prevent her from being a transplant candidate.  As a “third timer”, this was very likely her last bout with this beast.   For several days there was a valid consideration of the gravity of the situation and whether or not even Chemo was an option.

Last week was a whirlwind of emotion, action, many tears.   Increasingly if unevenly, there was a strange peace and acceptance this would be a significant moment of making life choices.   She was preparing herself to make them.   She’s not afraid of dying so much as afraid her stories, her ‘place’ here with a wonderful group of people will be lost.  It’s hard to explain and I’m not sure even she understands it fully, but she still wants to hold up her part within her wonderful (in her words, amazing and phenomenal) tribe of people. 

The past 5 days were an emotional roller coaster for all of us.

Yesterday morning (Thursday, April 6^th) was her first ‘real’ doctors appointment.   What she learned in the first 30 minutes is medical science has advanced quite a bit since her last bout with this beast and the bone marrow environment wasn’t as important as she thought it was.  There was hope.

Her Doctor and her care team believe and have hope that Kristina is a candidate for another transplant.  She found herself questioning  the Doctor regarding her comments on her bone marrow environment viability, but the Doctor was dealing with current medical knowledge.  Kristina’s knowledge was rooted in 8 year old history and with medical advances it’s almost ancient history.

The fact there was hope floored and overjoyed everyone in the room.  Which lasted about 30 minutes as the gravity of the treatment plan began to sink in.  There are significant risks and important milestones that need to be hurdled.  First aggressive Chemo to get the blast cell count down, then stabilization with ongoing assessment if she’s still a transplant candidate.  Then, if the answer is yes, if she’s healthy enough, if the numbers stay down, if a donor can be found, all these damn ‘if’s’ – then the transplant.  Which is only the beginning of another tough chapter.  Even the survival of the transplant isn’t a sure thing.

During the meeting about the care plan she looked at the head of her care team and asked ‘how many 3^rd timers have you seen successfully get through treatment’.  The slow answer was ‘I can count them on one hand’.

So there’s hope.  And a plan.  The phrase ‘Hope for the best but prepare for the worst’ has never had more meaning to her.  It’s hard to fight with everything you have and still be at peace with whatever outcome happens.  She may not be there yet.  But she’s choosing to fight.

Many, many details, but the plan (and future posts will contain more updates and more detail later as things come together) is she’ll get her Hickman tube placed on Wednesday the 19^th and then be admitted to the hospital on the 20^th.  That will start roughly a one-month in patient chemo regime where they hope to knock her blast cell percentage way down.  Once lowered, she needs to undergo more tests to determine if she’s still viable as a candidate for a transplant.    It’s a combination of having low enough numbers and being in shape for the transplant itself which will take a further toll on her body.

In short, she’s going to get a lot worse before she gets better.

All of this sucks.  Big time.  To make matters worse, she needs to stop ‘being Kristina’ for a while.  Which is tough for her.  She needs to focus her energy on herself and stay strong enough to endure the treatment.  Her energy has been spent getting out there – organizing cruises, hitting the slopes, sailing – metaphorically being ‘on deck’ for all that life has to offer and being with her cherished community of friends.

The realization that she’s sick – very sick – hasn’t fully set in.  She’s still processing it.  But she needs to prepare her friends that she will likely not be able to respond individually to all the amazing well wishes she’s getting.  She’s asking that you have patience with her responses.  She’s going to have ‘Chemo brain’ and be pretty foggy once it sets in and lose a fair amount of concentration – but she’ll still need encouragement.

So we’re going to try to use this blog to keep everyone updated with the journey that is to come.   It’s not going to be easy.  So have patience with her if she doesn’t immediately respond.

We’ll provide more updates as we’re able.

Editor’s note:  My name is Mark Aberle.  Kristina asked me to serve to journal her journey.  We’ll try to make sure the reader understands who’s voice is writing.  I’ll try to capture as best I can her candid comments and thoughts and describe, as best I can in layman’s terms, the current circumstances until Kristina can take over in her own voice.

The blog, as Kristina explains, serves several purposes.  It serves to communicate but also helps fellow transplant patient navigate their own by learning about others.  Transplant patients reach out to each other for support and information.

Also, the blog will keep it off facebook and Kristina has come to rely on this mechanism during her last two rounds with Leukemia. 

Welcome to Kristina's Blog

 Welcome to Kristina's Blog

"Live Life Boldly" is one of Kristina's favorite sayings.  Travelling the world.  Skiing.  Sailing. Making the most out of each day, each hour, each minute.  This blog has been created to share that incredible journey and keep up with the latest updates.

Living boldly doesn't mean every day is a good day. Sometimes the news is just plain bad.  But just like the stellar good days begging to be shared, bad days can be shared as well.  We're all in this together and for those of you who know Kristina, we are greatly enriched by her exuberant embrace of life and her countless stories.

Here's a link to Kristina's previous blog chronicling her medical journey and previous battles with Leukemia. 

Use this blog to send a message and share stories.  Updates will be coming soon.