Saturday, November 20, 2010

Fuzzy Wuzzy

Hello everyone, it's been a few weeks since I've checked in, and it's comforting to know that some of you are watching for an update.  Steve's health has been pretty uneventful, which is both good and frustrating.  We are glad he is not regressing, but wish his labs would shift from neutral to drive.  Check out the hair!!  ------->>>>

Exceptionally great news is that his bone marrow biopsy results showed NO evidence of leukemic cells.  With the exception of his very first, diagnostic biopsy, all have been clear.  The biospy is like "looking into the factory."  Dr. Altman said his cellular activity is "splotchy," yet doing well.  Results also showed that 98% of the new cells being created are from Mary's stem cells; target is 95% or more, so more very good news.

His weight is back down to 160; lost 2 pounds each of the past two weeks.  Appetite is...meh.  He is sleeping well and trying to fight the urge to nap either at all or as much.  Preferred nap location is now a comfy chair and ottoman in the family room, that way he doesn't get in too deep of a sleep pattern and just drifts in and out.  He isn't sweating anymore when he eats, that was very strange but not unusual in someone who hadn't been eating solid food week after week.   

Dr. Altman lowered two key things:  One, the hemoglobin number we use to determine transfusions.  It is now 6.8.  He is going about once a week for blood.  It used to be that a unit of reds would perk him up and he would feel the difference.  Now, not so much, and often the day after blood isn't a very good day.  The second thing lowered was his anti-rejection drug, Tacrolimus.  This will eventually be eliminated.  The drug helps keep GVHD symptoms at bay.  He no longer has the mild skin rash but instead has some mouth/gum discomfort behind his upper front teeth.  Pain meds knock that out pretty well.  Potassium and magnesium absorb through food for the new cells, and so pills and/or IV fluids help the new cells get up to speed.  The potassium pills are huge and have been totally eliminated, a giant hooray.  Magnesium is improving, and we have been supplementing the pills with 500ml magnesium IV riders, they are shooter-sized and go up over 2 hours, which is manageable.    The iron chelator, Exjade, arrives from the specialty pharmacy on the 30th.  

So here's the scoop:  Steve's case is complex due to the Hereditary Spherocytosis.  We have always had options since transplant, and the one often taken is the wait and see decision.  Some of the questions that arise may or may not have answers.  His platelet count has gone WAY up, at one point this week they were at 110.  Again, remember 5 not too long ago?  That is great.  Hemoglobin has run from 5.6 to 8.1 (AFTER 2 bags of reds)....and his white count is bouncing up and down, "normal"...but was at 1.3 today, so he's borderline neutropenic again with his absolute neutrophils teetering around 500-700.  Frustrating.  Dr. Altman pointed out that one factor we *may* be dealing with regarding his hemoglobin is that Mary's DNA is creating spherocytes, as she also has the marker.  So Steve's spleen is recognizing HER/his new red cells as "wrong" and may be sequestering them.  I wasn't blogging back during tissue typing.  When using a sibling donor, they look at 6 major antigen proteins and hope to match all 6 for a perfect match, one that will produce the best transplant results and fewest graft-versus-host complications.  Of the five adult children, four have the HS marker.  Mary was the only perfect match, and she has HS.

Dr. Altman *thinks* Steve will never feel 100% better until the organ is removed.   I plan to press forward with a surgical consultation and have Dr. Altman arrange that in fairly short order.  Steve was NOT open to that several weeks ago.  We need to get him better to avoid being taken down by a cold, flu or other common malady that would weather much better in a healthier person.  He got his flu shot and we hope anyone that visits does the same.  

We have this week off from clinic, and will host Thanksgiving here next Saturday.  I'm pooped and not feeling very humorous tonight, thanks for checking in on us!



Wednesday, November 3, 2010

When Irish Eyes Are Aspirating...

Ask, and ye shall receive!  Late yesterday a NW scheduler phoned that Dr. John Galvin offered to perform Steve's bone marrow biopsy.  He may have been coerced.  Regardless, it was show time, and Steve was apprehensive last evening.  Dr. Tim Huyck had done 3 of them, Galvin 1, and The Jerk did one.  Steve hadn't napped the past two days, feeling that by stretching himself energy-wise, he might improve the quality and consistency of his sleep.  It is not unusual for him to fall asleep at 10, sleep well until 1, then lie awake until 5 or 6 a.m...then passes out again, gets into a deep sleep and wakes up in a fog.  The past two weeks he had not improved in lab numbers, more like a holding pattern over O'Hare during a storm.  You are hoping the storm passes and you can land safely, but there is always a chance of diversion.  We don't want to land at Mitchell.

He had a rough evening Tuesday, very emotional, very down, gaunt, and tired.  All of a sudden he looked at me, and said, "you know what?  I think I feel a lot better all of a sudden."  (Be creeped out.)  He went to bed and had the best night's sleep in months!  He was rather chipper this morning, was PLEASANT, almost happy (okay, let's not get carried away) and we grabbed a McD breakfast on the way to the clinic.

Here's one of those things that hits me every week.  I look at this sign and try to imagine how much worse it could be, and I try to be grateful for an illness that has a hope for cure and physicians and nurses that are working toward that goal.  Steve has never needed surgery for his cancer.  I have seen people on the 21st Floor in Galter that are beyond description.  Twisted, deformed, pasty-skinned people that look just like Nazi concentration camp prisoners, but these images are in color today.


Steve and I walked in to see Dr. Galvin waiting in the hall.  He is "black Irish," and has a twinkle in his eye that makes you feel everything will be alright.  I realized I had never stood up next to him before (I was always sitting in the hospital, always...) and he was taller and more athletic than I realized, and was wearing a green plaid shirt and jeans instead of his lab coat and dress pants.  I gave him an obligatory bazinga! about Notre Dame's awful football team (he has an undergrad degree in English from ND) and we were off to the races.  

I have come to realize that many of this blog's readers are very interested in my photos and in learning about "the process."  Well, medical junkies, here you are, an early Thanksgiving feast for the eyes.   

The glass slides are all prepared ahead of time, and labeled by hand with Steve's name and, I think, hospital ID number.  The med tech's job reminds me of a baseball outfielder.  She waits for the pitch, sees the ball hit, and gets into position for the catch.  The ball (Steve's aspirate or marrow) is delivered into her glove and she makes the play for home.  She quickly takes the samples, smears, rubs, shakes tubes, etc. and gets it all to the lab for both basic and  high-level testing.

 

The first photo is of Steve's aspirate, no wait, his butt isn't showing, is it?  Gotcha.  The aspirate is the "juice" that is extracted from the bone cavity and is semi-liquid marrow, much like the goo from a ham bone.  It can tell us the type and quantity of cells in the marrow.












Dr. Galvin at work, doing a top-drawer job of aspirating and controlling any and all pain or discomfort during the procedure.  iPod selection was a mix from the group Boston, which Galvin deemed "most worthy biopsy music."

We had really great conversation with him, and talked about a shift in medical school training and thinking that seeks students with a broader, more liberal arts background pre-med.  As is often found in "teaching hospitals," Dr. Galvin explained (and smoothed some waters) about how practitioners are trained at Northwestern.


The pièce de résistance, the bone marrow!  This allows the doctors to examine the "architecture" of all cellular structure.  A gender-typing test was ordered to determine the presence of XX (female) in the cells, providing proof that Mary's stem cells had taken up housekeeping and Steve's body was producing new cells.  At this point I get very confused.  I don't know if I need to guard my mascara and Chanel perfume or not (?? YIKES ??)...we are going to get a LOT of mileage in the joke department with this one.  

Dr. Altman told us after the biopsy that there WAS evidence of XX genes on August 28, the date of his last marrow biopsy, and that a tech communication disconnect kept her from knowing and telling us.  THAT means that the FIRST transplant on August 13 DID WORK, it was NOT a failed transplant!!!  Another huge, huge sign of improvement....she mentioned for the first time the *thought* of pulling his PICC line.  Unbelievable. 

Meds stay the same from a week ago.  His Tacro dosage got bumped up twice since the last visit, and now all signs of GVHD rash are all but gone on his lower legs and forearms.  I asked about his high ferratin level, and the ball started rolling to get his Exjade prescription filled.  Did you know there is such thing as "the specialty pharmacy?"  Oh sure, there is!!  Yes, kiddies, guess where the Exjade comes from?  Might take a week or two.  I just rolled my eyes at the thought of Blue Cross paying for that....muah ah ah, I'll find a way!!!!

Returned home to the dog spazzing out with badly infected ears, called our vet, and $123 later (that Blue Cross for sure won't cover), I came home to hear that Dr. Altman called with today's FABULOUS lab results....here we go, and let's hope this party is starting:  

WBCs 2.1  (what what?)
ANCs 1.0 (sweet!! I'm not cleaning anymore)
Hemoglobin 7.2 (she lowered transfusions to <6.8!)
Platelets...drumroll.....79!!  Go sharpen the lawnmower blade!!

Goodnight all!