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.