DELAY AND A SURPRISE ROUND OF CHEMO

 

 

It’s been nearly 2 weeks since the last blog post.  So much has happened.  Where to start? 

 

First the lumbar puncture (LP).   As announced in the previous post on the 17th, the results were good.  No blast cells.  The aftermath of the procedure itself was rough.  Most folks don’t have residual symptoms. Kristina's LP 5 weeks ago went perfectly fine. But Thursdays hit her like a ton of bricks.  And started her thinking about how difficult the road ahead is going to be. 

 

First off, what is a Lumbar Puncture?  (which is also called a Spinal Tap, cue Rob Reiner and Christopher Guest).   A needle is inserted into the space between two vertebrae to remove cerebrospinal fluid.  This is the fluid that surrounds the brain and spinal cord to protect them from injury.   The reason for checking that fluid for blast cells is that it’s very difficult for blast cells to get into the spinal fluid and once there, it’s very bad news with a poor prognosis.  The absence of blast cells is good news.

 

When the pressure level of the spinal fluid changes, or if there is some leakage, the brain is impacted and while some headaches are somewhat of a ‘normal’ post procedure symptom, Kristina was one of the rare patients with significant and miserable symptoms:   horrific headaches and spontaneous vomiting.  Spontaneous with very little nausea to warn of the sudden ejection of the previous meal.   

 

The procedure was on a Thursday, the symptoms hit Friday then magnified over the weekend.  On Monday evening there were hints of recovery, and by Tuesday morning most of the symptoms had receded.  But with roughly an 8 pound weight loss and residual weakness that she’s still recovering from. 

 

Now, a week later, she’s almost back to normal with strength growing day by day.  A miserable, scary and rude awakening of what three days of inactivity can do to an (there’s no other way to put it) an ‘older body’.    While Kristina isn’t your normal middle-aged human (sailing, skiing, etc) she’s also not 25 or 35.  Aging isn’t kind to the body and it takes longer to recover from, well, you name it, it takes longer to recover from. 

 

But as the week progressed, the Lumbar puncture was actually (sort of) the highlight. 

 

Now for the bad news.  On Thursday (the 22nd) during an appointment, Kristina mentioned a lump on her left calf, the result of a bruise she had acquired during her hospital stay.  Bruises aren’t uncommon when platelets are low and lumps form as the bruise recedes.  To Kristina, this is annoying, but probably normal.  To the doctor it was more suspicious.  He ordered an emergency biopsy of the lump.   

 

Then on Friday, Kristina learned that the biopsy triggered a sequence of events that has delayed the transplant and triggered a new round of Chemo.   More of a ‘maintenance’ type of Chemo, with less dramatic symptoms, but chemo nonetheless.   

 

The timing between Chemo and Transplant is critical.  In simplistic terms, the Chemo kills off the blast cells as well as brings the immune system to its knees.  The transplant is timed to be done after the body recovers from the chemo but before the blast cells can emerge.  It’s a window of time, but a relatively narrow one.   There was always the possibility of a second round of chemo, but it’s like the fine print on the back of the jar of medicine.  It was out there as a possibility but wasn’t part of the plan. 

 

Kristina has already had a couple of delays.  First, the two donors identified were in Europe, so that added some logistical issues.  The primary donor was pregnant so they went to the back up donor.  That cost another week.   

 

Now the biopsy, warranted or not, has caused not one but 2 additional delays.  The back up donor is ready now.  Like right now to be harvested. But until the biopsy results are in, Kristina isn’t cleared to be a transplant candidate.  So her team made a request for a delay in the ‘harvest’.  For reasons not known, but hey, it’s summer, the donor can either do it now, his next available window begins July 25th.  One of the two.  Her team chose the later date.  So the biopsy delay triggered a donor scheduling delay. 

 

Which brings us to the present set of circumstances with the transplant now outside of the window of time after Chemo.  And to add insult to injury, her care team is recommending a month between Chemo and transplant, which means she’s got to start quickly.   She started Wednesday the 28^th.

 

So a round of Chemo that wasn’t in the cards a week ago now all of a sudden needs to be done right now. 

 

All of this has pummeled Kristina’s already raw nerves and the roller coaster of a ride has left her a bit pissed off after the surprise after the early return of the pathology result confirmed (late Tuesday afternoon( her predicted / expected ‘negative for any malignancies’.  Disappointment may be a better word, but angry fits as well. 

 

Specific asks.  Now that ‘Chemo lite’ has begun, Kristina is likely to be feeling the effects this coming weekend.  She ‘thinks’ it’ll be ok – and she’s pretty sure she’s not going to need any in home care – BUT – she may need a grocery run if she’s feeling too weak.  She probably won’t need that, but she might.  So – if you are around, shoot her a text.  If you feel up for bringing a meal for her, confirm with her first, but do check the food prep cautions on the right hand side of the blog. 

GREAT NEWS, WAITING FOR NEWS,THE PATH AHEAD AND SOME REQUESTS

 

First the great news.  Kristina had a lumbar puncture on Wednesday, results are back and no blast cells in the spinal cord.  Really great news. 

The no news is from the BMA test on Tuesday the 13^th.  According to the RN, the Pathologists had not yet ‘resulted it yet’.  So, chalk it up to supply chain issues, but still it’d be nice to know.  Preliminary results from the first BMA test were back the following day.  

Now for the hiccups.  During her first of what turned out to be four appointments for the transplant protocols all was going well until Kristina asked about her life time max for one of the medications in the G-CLAM treatment.  This appeared to catch her doctor by surprise.  Along the lines of ‘oh, yeah, we hadn’t thought about that’.  The rest of the meeting was moot and ended a bit awkwardly.  

A revised protocol was offered during the second meeting.  A new clinical trial was being offered and after listening, Kristina asked, “So just how new is this?”.  They’d check and get back with her.  After she had left and driving away, they called.  It was brand spanking new as in never used before.   Too new for Kristina’s taste. 

On the third visit, they offered two protocols, both involving FLU/MEL (if you want to read more about FLU/MEL, you can google it, but I promise your eyes will glaze over).  One of these was in clinical trial and while it had been in use for a bit, the post-transplant treatment was randomized.  Meaning they effectively flip a coin on which treatment you’ll receive so they can later measure which one worked out better.  After listening to Kristina describe her decision-making process, I have a new found empathy for guinea pigs.  She ended up selecting the more tried and true treatment. 

There wasn’t supposed to be a fourth meeting, but a routine appointment turned into one and her care team challenged her post-transplant coverage plan.  The scope of people, lack of nighttime professional coverage and the lack of a training procedure likely conspired to her medical team’s concern.  Kristina now needs to prove the plan is viable and it’ll work.  

Then the push back on the care giving schedule.  And the uncertainty on the 2^nd BMA test. 

Despite all this, the schedule is proceeding.  Admission to the hospital on July 6^th and transplant on the 11^th. 

There are some pressing issues.  Kristina needs to prove she has a workable, viable, post transplant coverage plan.  Jerda is helping streamline the plan (some of the objections may have been simply visual) but there are some specific asks: 

1. Using the Calendar sign up for  backup slots.  It’ll help make the calendar look more robust. 
2. If you do sign up, you’ll be asked to watch a training video.  Nothing extreme, but there are ‘rules’ on what she should eat, how things can be cooked, and when to call Fred Hutch if certain symptoms appear.  It may seem like a lot of information, but it’s along the lines of a ‘pregnancy diet’ and for the immunosuppressed it becomes sort of a common sense approach to eating.  The care givers will be sent a link and we’ve added a section to the right and a video link for handy reference.
3. The medical care team is pushing Kristina to hire more professional help (what are we, her friends, chopped liver?).  What that boils down to is that subject of which we do not speak.  Funds.  If you are able, please go to the Go Fund Me page on the main blog page.  Contributions are sincerely appreciated.   

In the meantime, diagnostic tests have begun to ensure every organ / body part is ready for what is coming. 

Editors note:  We'll likely be blogging more frequently as the transplant approaches.  

FULL REMISSION

Full Fricken Remission

Kristina’s BMA test results came in with two more supporting tests and it’s unanimous.  Full Remission! 

This was the much hoped for news with the added bonus that her Neutrophil count is at 590.  The counts need to climb, and they are, but just a few weeks ago her count was zero followed by too low to count. 

Progress.  

The next BMA test is the 13^th to ensure the progress is maintained and the blasted blast cells are not emerging.

There have been a few bumps in the past 10 days – not huge, but her first donor became pregnant so now a back up has been identified, but that pushes the transplant by a week or so.

In addition the handoff from UW cancer care alliance to Fred Hutch wasn’t smooth.  Supplies hadn’t been ordered and appointments hadn’t been made.  It’s a complicated, large system of support and while it is one of the best in the nation, it’s another reminder that the patient and their advisors need to be strong advocates for their own care.   Aside from the various medical opinions she’s receiving it’s the management of the bureaucracy that takes effort.

The transfer process is now patched up, appointments have been made and it looks like everything is in order and yes, she got a sincere apology and admission the ball was temporarily dropped.  Other than some confusion and perhaps a bit of annoyance, no harm was done and the dropped ball was successfully recovered.

In other news, the calendar is full for her post transplant care.  The tribe came through and now it’s the backup slots that could be filled in.  This was a major hurdle that needed to be completed by June 6^th and it’s done.

Now Kristina is squaring her shoulders to the transplant.  Her body needs to do its part and an array of tests will occur in the next several weeks to ensure that her body is up for the challenge. 

She needs to go on the transplant diet now.  She met with a nutritionist and there are an array of ‘do and don’ts.  Here’s a link.  And another one.  It’s not only what you eat, it’s how the food is handled or prepared.  Some of it is common sense, but it is restrictive.  Especially for Kristina, whose cooking expertise is the equivalent of her earlier neutrophil counts.  By her own admittance, her skills are, well, too low to count.

Her other challenge in this ‘pre transplant’ stage is simply to get stronger.  Today it’s a walk to the zoo, and she needs to get out and walk more.  When you call her ask her about her recent exercise.  Remind her to drink water.  She knows all this, but let’s spread the nagging around.  It’s our way of showing love.

Authors note:  Speaking of dropping the ball, I certainly did by not promptly posting the test results.  The fault is mine (aided by some texts that didn’t come through, but it was a busy week).