100 days


Today I had a round of tests for my 100 day appointment.  I can’t believe it’s already been 100 days since my transplant.  I thought this day would never come.  It felt so far away while I was in the midst of daily doctor visits and blood transfusions and fevers and mouth sores and needles and rashes.  I know I still have a long way to go, but this is a huge milestone!  I made it.  Whew.

Here’s what I did today:

Pulmonary function testing.  I’ve done this several times before.  They check to make sure your lungs are still working well and that the chemo hasn’t damaged them.  So far mine have been fine.

PET scan.  Not one of my favorites.  I think today was PET #7.  First they put an IV in your arm so they can inject the radioactive contrast into your circulatory system.  This always takes forever, because I am a ridiculously tough stick.  Today they had to call the IV team and he accessed my port since my arm wasn’t cooperating.  Thankfully they left my hands alone.  I hate it when they try to push an IV in my hand.  It just hurts, and then the IV blows when they try to flush it, and they end up having to get an order to access my port after all.  That’s a needle too, but there’s no fishing around for a vein involved.  So then they put the radioactive material in you.  I think I’ve probably had enough to become some sort of mutant.  I’ll let you guys know what I turn into.

Usually I have to drink a nasty contrast drink too, but today they didn’t make me do it since I had another procedure later.  And then I have to just sit there for about an hour while the contrast circulates through my system and soaks into the cancer spots.  (It has sugar in it and cancer loves to eat sugar.)  Finally they do the actual scan, which is about 25 minutes of lying still inside a tube.  Fun.

After my PET scan, I had to do blood work.  Hooray for ports- an easy way to get blood out.  Lots of blood.  It was about 14 vials.

And last…the test I had been dreading all day.  The bone marrow biopsy.  Oh yes, I’m totally going to tell you all about it.

I lie down on the gurney, face down, and hold on for dear life.  Janet, the biopsy nurse, feels around for a good spot on my hip bone.  Then she marks it.  Then she gives me a lidocaine shot.  Once that starts working, she cuts a hole with a scalpel and inserts a big ole needle.  She feels around with the needle for a good spot on the bone, stopping to give me some more lidocaine on her way down.  Once she’s got a good spot, she uses a hand drill to drill a hole in the bone.  She suctions out several samples of marrow with a syringe.  Then she cores out a piece of bone.  The marrow and bone get sent off for testing.  The last part is probably the worst- she pulls out the needle and the drill.  She bandages me up, and I flip over to keep pressure on it so it won’t bleed too much.  The lidocaine helps, but it doesn’t numb the area completely.  Today was my fourth bone marrow biopsy.  I have at least eight more in my future.  I can get light sedation or go to the hospital, where they use an electric drill, but I’ve done that.  It’s a huge hassle.  I’d rather just get it over with as quickly as possible.

So that’s all the tests I had today.  I’ll see my transplant doctor in June to go over everything.  I’ll also talk to him about the next transplant.  I’m hoping to have the summer off.  I’m not quite ready for another one yet.  I still have to get the stubborn masses to shrink first, and I’m still working on that.  I have another round of brentuximab (puke fest chemo), and then some radiation, so we’ll see how that goes.  In the meantime, I’m enjoying my little bit of freedom.  I’m even growing some eyebrows and some fuzz on my head!  And last night I was able to go to Fiona’s pre-k graduation!  She did a great job.  Her class sang several songs and they were so cute!

Many thanks for all the encouragement you have been throwing our way.  My family and I really appreciate all the love from our village.  What a blessing to have such wonderful people in my corner!


4 responses »

  1. The 20 min. in the tube sounds awful! But I am not to keen of that marrow biopsy process either. You sure handle it all bravely. Glad that you are able to get out a bit, especially to the children’s events, that must be great for all. What an inspiration you are. Keep the upbeat attitude. Love and thoughts to you and your family.
    Katharine Parsons

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