BMA TEST TODAY

 

Many journeys hinge on single events.  Previous battles culminate in one moment of decision. 

It all boils down to this.  The BMA test.  Today at 2pm.

Kristina must be in full remission to go forward.  Test today, results on Tuesday.

There’s nothing to say she isn’t in full remission.  She’s being treated at a top notch facility, by a top notch team.  To date, despite some road bumps, everything has gone according to plan.  Everything should go well.

Should be in full remission.

The test results will change those first two words.

So here’s the ask today.  Think of Kristina.  Pray for Kristina.  Send positive energy her way.  Let’s reach into the cosmos and, in her words, get “as much collective juju vibes we can muster”.  This is it.

Must. Be. In. Full. Remission.

THE CALM BEFORE THE STORM

 

Kristina’s Neutrophils are at 0.13 (or 130).  This is the 4^th day of steady increase. Her Ox level is 95, which is about as close to normal as she can get.  So all metrics are pointing north.

Kristina is feeling much better at the moment.  The chemo really knocks you down, but then the body slowly recovers.  She’d like to express her sincere ‘thank you’ to all the well wishes she’s gotten but while there’s a momentary lull between the Chemo and the Transplant, she knows that however bad the Chemo was, the Transplant will be worse.

While this round of Chemo had some complications, all and all it was (when viewed through blurred eyes) normal.  And she’s out of that phase and feeling pretty good.

She’s planning on making the rounds in the next few days and live the next couple of weeks as normally as possible.  She’ll be wearing a mask and hope that others do as well – K95’s preferred.  The risk isn’t zero, but are fairly low.  Did I mention she feels pretty good at the moment?

The next big thing is Wednesday when Shannon will take Kristina for the BMA (Bone Marrow Aspiration) test.   This will determine if she has achieved full remission and confirm that the Chemo did what it was supposed to.  This is the gateway to Transplant.

Then the tests begin and likely more transfusions.  For many of the tests, she can drive herself but if there are blood draws or platelet transfusions, she’ll be needing someone with her and in several cases someone to drive her to and from the appointment.  We’ll use the Calendar to manage that activity.

Believe it or not, the acute need right now is the signup for care giving in August and September.  After transplant, she needs to have 24 / 7 care and she’ll need to prove that she has 24 / 7 care covered on JUNE 6th to qualify for the Transplant.  If that box isn’t checked, then she can’t go forward with the transplant.  In other words, action is required by June 6th.  (or NOW.  Just do it).  Weekdays are covered by professional caregivers (great to mitigate that if you can work from home at her place) but the key needs are the weekends.  If you do sign up, click ‘all day’.   So if you have days  to spare especially a weekend, use the calendar to sign up.

Right now Kristina is dead set on getting out of the hospital and enjoying herself.

HOMEWARD BOUND

 

HOMEWARD BOUND

This morning Kristina woke up feeling different.  Better.  Stronger.  She’s had a couple of good meals.  A few nights of reasonably good sleep.  No fever in the last 48 hours.  Her Neutrophils count was still climbing, now at .07 (or 70, depending on how you express it).  Low but rebounding.

Then Dr Cassidy came in and assessed her.  Kristina asked the question. 

 “When can I go home?”

Dr Cassidy said “well, I can’t think of a reason to keep you.  I think we can send you home this weekend”.

Joy.  I can just hear her now “OmGawd, OmGawd, OMGAWD!!!”

She can’t wait to sit on her own couch.

And yet some logistics remain.  Supplies.   She still has her Hickman in, and it’ll be there for next year, so now there’s some logistical considerations to get supplies (cleaning, etc) for the daily care.  That and some other considerations (like packing, taking down all the decorations, etc) need to happen. 

Unexpected good news and the BMA test, the biggie, still scheduled for next Wednesday, the 24^th.

A blip on the radar

 

In typical nautical fashion, Kristina described her latest Neutrophils as a 'blip on the radar'.  That fuzzy image that shows something is there.  Maybe.  That distant target that on one sweep of the radar beam shows, then on the next sweep disappears.  It's there.  It's not there.   Is something out there?  Then another sweep and a shadowy target appears again.  Over time the situation becomes clear, but that first initial brush is full of questions.

And so it is with the Neutrophils Count.  Kristina cautions it's not a linear process.  Just like the radar, it's possible that the next test will show zero.  Or too low to count.  Or it might go up a little, but then come down.  It's all part of the process.  

But it appears as if the immune system is at least thinking of coming back.  Perhaps not a start, but sign that the start is about to begin.  That first blip on the radar.

A WEE BIT BETTER...

 A “Wee bit” better 

I thought ‘wee bit’ was Irish, but appears be Scottish in origin, based on mid 15^th century Old English.  But I digress which is good news, as there’s no huge news from Kristina.  She says she’s a ‘wee bit’ better. 

She did have some fevers last night, and is now on 2% oxygen, with her vitals near normal.  Again, grading on a curve, generally positive news.  Platelet count jumped from 5 to 40 with yesterday’s transfusion, and they’re going to see how long she can maintain that.  Normal is between 150 and 400, so 40 is low.  But better than 5. 

On the other front the Neutrophils have moved from zero to ‘too few to count’.  Unfortunately this doesn't mean much.  It's like going from zero to nil.  Or going from nothing to zilch.  Effectively her count is still, well, too few to count.

The 24^th is still the target date for the BMA test for her blast cell count.  As she approaches that date, there are many ‘small’ questions that need to be resolved – will she still need oxygen?  Will she still be on Vancomycin? Is the C. Diff resolved? How’s her Neutrophil count?  So many things that influence the hospital discharge date and the BMA test date.  Everybody is different responding to Chemo and as doctors rotate in and out some have different opinions – but uncertainty is part of the game.  It’s frustratingly normal for these types of cases.  Variability with each patient and their own bodies reaction, then variability with how different doctors view results.   

Part of the patients' task (and their advocates) is how to assimilate the various pieces of information and make sense of it – while accepting that some things aren’t knowable now.   

The BMA test results are a huge milestone.  Medically, emotionally, it’s big.   

The doctors are concerned about the diarrhea.  The C. Diff was very much an unwanted thing and the medical folks are paying attention to it.  There are only so many fronts you want to battle on and that’s an ongoing issue for now (for the sake of the readers, we’ll not cover the details.  Or use the word explosive.  Ooops).  

Other than some internet issues connecting today (with everything else, really?) nothing too much to report.  She's a wee bit better.   With occasional explosions. 

IMPROVEMENT

For the first night since admission, last night was a near normal night of sleep – she had some help with some mild meds, and grading on a curve, a reasonably good night.

Over the phone, she was sucking on ‘ice chunks’, which makes her mouth feel pretty good.  She was hesitant to say it, it is too early, but perhaps the worst aftereffects of Chemo may be over (we’re all knocking on wood).

Some of her recent Neutrophils  tests say ‘too few to count’ instead of zero.   Good news?  She’ll check on it today with her doctors.   She’s is getting transfusions of platelets and she’s still on 3% supplemental oxygen.  Her ox level was 98, which is good.  There’s still some fluid in the lungs.  Blood pressure is near normal at 119/67.

Her blood type may have changed again – she’s getting AB+ now.  Pre Leukemia, she had B+, but then changed to A+.  In 2014, she got hundreds of transfusions, mostly of O+, but last night she got AB+.  On one record her blood type is listed as NTD (No Type Defined).

Probably still no visitors at the moment – the protection protocol is cumbersome and she’s trying to marshal her energy.   She’s not out of the woods yet and the transplant will be no picnic.  But for now, she’s on the upswing. 

While no visitors, she’s having fun with texts – don’t be surprised if she responds simply with an emoji, but know they are read and appreciated.

 

IF IT'S NOT ONE THING IT'S ANOTHER (BUT SHE'S FEELING A BIT BETTER)

 

****Quick update to below:  I should have put this in the blog, but for now, no visitors (unless OK'd by Kristina) for the next few days. Even though she is feeling a little better, the contagious nature of C. Diff warrants caution.

If it’s not one thing, it’s another.  For those going through Chemo and a hospital stay, there’s the big story – Leukemia and the transplant – but there are also dozens of ‘little stories’ that inconveniently hitch along for the ride.  One indignity after another.

For Kristina, the latest one was the diagnosis of C. Diff.  Which stands for ‘clostridium difficile’.  A punch to the gut.  Literally.  This was not totally unexpected in a hospital setting.  There are a variety of ‘bad’ things floating around a hospital – MRSA, CMV, RSV, even Shingles among others.  So this wasn’t totally unexpected.

C.Diff causes diarrhea and is highly contagious.   It also causes an elevated protection protocol – (gown, gloves, mask etc.)  She’s on a 10 day course of oral Vancomycin and the impact on the arc of her discharge and transplant are currently unknown.  So many unknowns and each one has its own worry.  Which Kristina’s been doing since about midnight.

Her Neutaphils are still zero, but in a surprise statement her doctor said ‘oh we can still discharge you even if they haven’t come back’.  Kristina’s still processing that, but it’s another example of ‘new thinking’ vs older thinking but there’ll be more discussion on that front over the next few days.  Her BMA aspiration, the test to assess the level of blast cells, is still set for the 24^th, but the new C. Diff diagnosis may alter that.

Despite all this, Kristina was feeling a little better.  Her temperature this morning was 36.9, which translates to 98.4.  About right and about time after having 5 days of fever.  Blood pressure 114/61, still low, and her oxygen was 93.  Still low but better than before.

She’s on 3% Oxygen now, the delivery of which has caused another indignity.  The rubber nasal cannula that she wears has rubbed her nose raw and she’s been battling bloody noses all night.  Kinda gross, but very real and uncomfortable.  Did we mention the diarrhea?   It’s uncomfortable battling a life threatening disease.

All these things – the 2 rashes, the streptococcus infection that jumped from the mouth to the blood, the low blood pressure, low oxygen levels, the sand papery / gun metal mouth feel, hair loss, skin peeling from the lips – and now C. Diff.  One indignity after another.

No wonder she posted “After this week I really need to be taken out…on a date or by a sniper, either one is fine with me at this point”. 😊

Despite all this, she’s saying she’s OK.  It’s just hard at the moment.  She’s battling boldly and her voice sounds pretty strong. 

Yesterday she raised her blinds up for the first time in several days and today’s chore will be dealing with the last of her hair.  It’s really starting to fall out at this point.  That first cut early in the week was the toughest.  This is just clean up.

More news later on how the C.Diff diagnosis impacts her trajectory of discharge, tests, and transplant.