Another Treatment....

Today I received my first photopheresis treatment in an effort to control my graft vs host disease and get me off steroids.  The simple explanation of how this therapy works is that certain white cells are separated out of my blood through a centrifuge, and then exposed to UV light and put back in my blood.  The hope is that this will suppress these cells' (bad) reaction to the foreign environment (me) that they are in.  It's a painless procedure (they saaaay), except that I'm stuck with one ENORMOUS and another not-as-ENORMOUS IV needle to make this treatment happen.  

This was actually my second attempt at the procedure....the first one, which took place two weeks ago, was a bust when my blood pressure dropped to 70/50 within the first 10 minutes and they had to abandon the treatment.  All went well today, however, and I actually got a great nap in!

I'll be receiving photopheresis twice a week (for a few hours at a time) every other week for quite some time.  Hopefully, we'll be doing this for about a year (I only say "hopefully" because that would mean that the treatment is having a positive effect.  If it doesn't work, we'll know in about 4-5 months).  However, the photo nurses are really fun to hang out with.  And, the Hematology dept has just moved to a totally remodeled floor that is so much better!  There are views!  and tvs in the rooms/at the chairs!  and a coffee machine!  

There it is!  The coffee machine!!

New Photopheresis room. 

Another treatment room with a fabulous view (the GG Bridge is in there amidst the fog)

A treatment chair

View for a treatment chair!

Here I am during the first attempt, posing with photopheresis machine :)

On another note, I gave Nic a little haircut over the weekend.  He was really resistant to going again to Daddy's place, so I took matters into my own hands.  I really just trimmed up the sides and neck.  And then I followed him around for the next couple days snipping more and more :)

"It's not you, it's me"

This last period of blogging inactivity has been the result of lots of different factors!  In March, we transitioned from a full-time nanny to a part-time one, so my Director of Household Operations role has expanded to include more childcare duties :)  Nicholas has also started a drop-off preschool prep program for 3 hours on Monday mornings.  Concurrently, I developed a GVHD relapse (likely a result of finally getting off an immunosuppressant in February), which, over time, led to a pretty debilitating situation for me.  My joints ached and I was so fatigued, and it kept getting worse.  Finally, on Friday I started Prednisone, which will be a "wham-bam" fix to the issue.  So now I'm bouncing off the walls and was back in action in time for Easter weekend!

On Saturday, we went to the annual Bunny Party at Peekadoodle.

Nicholas was not happy that the BIG bunny came to this party.  He likes the LITTLE easter bunny.

But then he figured out that the big guy brought all these great eggs..... 

And he warmed up a little.

 

Organizing his Easter basket loot.....

This morning, we went to Peekadoodle for school and Nicholas was very upset to find that the Easter Bunny had gone home.

Other things we've done....

Taller than a cone, shorter than a digger's wheel!

Pre-swim class stamp session (he got looks!).

We went to play with Gregory and Giuliana!

Dining at the farmer's market.  So good, they're right!!

Check out this falafel sandwich!!!!

Photo-wha?

I received the results of my skin biopsy today.  It is indeed GVHD!  This is more good than bad.  I'm "glad" I didn't have yet another biopsy just to reveal eczema.  It also shows that the graft is definitely fighting!  The skin rash isn't a huge concern for my medical team right now (although, I had quite liked being able to go out without makeup if that's what I felt like, and now I feel the need to cover up a bit).  But, they do have to treat it and don't really want to increase my steroid or immunosuppressants in order to keep it under control (those two medications would also affect the graft-vs-lymphoma and not allow the new cells to assault the disease to its full potential).  So, I'll start another new med.

There was also discussion today of photopheresis, a therapy in which my blood is taken out of my body, exposed to UV radiation, and then re-infused.  Sounds fun!  The benefit for me is that my immune system is not suppressed for photopheresis, thereby allowing the graft to keep up the good fight.  The downsides....it's a 3-4 hour weekly treatment, I'd possibly need another central line inserted in my chest (blech), and the usual nausea.  The "queue" to get access to the photopheresis machine is quite lengthy though, so there isn't even availability til September-ish.  Far enough away for me to not stress out about it right now.  But, the conversation about it today really drove home the reminder that although I may be considered "in remission," my job these days really still is to just get healthy!!

On to a more exciting topic....the cookies I made yesterday!  They are M&M cookies from the averiecooks blog.  A one-bowl-recipe and extremely easy to whip up.  The secret ingredient is cornstarch!  And oh are they are delish....chewy and thick!  I found a new assortment of M&M colors that make them look extra appealing!  Nicholas brought them to a playdate today and the kids enjoyed the new colors :)