week in review

It is 4 AM and I am wide awake...so what better a time to write a post!

I really need to update everyday as so many little gems show themselves each day and I never seem to capture them if I wait.   But I do want to do a recap of the week to keep the stem-cell process journaled, and also to give you an update as to where we are in the process.  It is late, and I am drugged, so please forgive the disjointedness.... :)

Sunday--platelets

Monday--day off!  Valentines Day! Mom delivered groceries from Whole Foods!  She is amazing, have I mentioned that before?  I am learning how to ask for what I need, as being home-bound, and car-forbidden makes you dependent.  I spent the day mostly on the couch. Michael cooked dinner (with delicious homemade bread from Pat!) and bought me beautiful flowers, and came to bed with me at 8:30 when I simply couldn't keep my eyes open any longer.  He IS love.  And has given up so much for me.  I hope to spoil him to death one day soon.

Tuesday--blood work revealed severe anemia, which was no surprise after a 12-hour nights sleep and I still didn't want to get out of bed...So I got my first red blood cell transfusion, also without a hitch.  I also met a new friend...a hodgkins patient who's story mirrors mine in a lot of ways.  She is 18 days post-transplant and doing better each day.  It was so nice to connect with her, and see someone on the other side of this.  Mom also got to meet her mother, and they could share experiences there too.

Blood-work also revealed that my stem cells were no where near being ready for harvest.  This was a bit of a disappointment, but I was relieved when the nurses said that Hodgkins patients took longer to mobilize because of all the chemo we've done.  So they told us to come back on Thursday to check again, and realistically, it might not even be until Friday or Saturday that we can collect.

Wednesday--feeling BETTER, finally!! Amazing what a few red blood cells can do!  I called into grand rounds at work, and that was a nice distraction.  I am SO so so grateful for those who donated blood.  I have donated regularly through out my adult life, but I realize now, it wasn't often enough.  And, I never donated platelets.  I knew blood donation was important, that's why I did it, but I would have done it more often if I had really known the impact.  It is too bad that it takes a personal experience like this to realize such an important thing.  I can never give blood again, but I hope to raise awareness to others.  I am a believer!!  What an easy way to save lives.

I was thinking a lot about my dear sister-in-law, Dawn that day.  She is such a fighter and was in chemo that day! She is almost done with her several month struggle against triple-negative breast cancer.  She is on the home stretch and I am SO proud of her for her strength, her positivity, her courage, and the beautiful heart in her.  She is awesome and I am sending her so much love.  I can't wait until the two of us are romping around in the woods together, laughing, and putting these chemo memories behind us.

Thursday--WE have Stem Cells Baby!!!  And I could tell my bones were working hard for them!  I hadn't had bone pain until I jumped up out of bed Thursday morning and almost fell flat on my face from the pain in my pelvis!!  So those little guys are working, and I thank you.

The collection went without a hitch, it wasn't painful at all.  Mom donated platelets in the chair right across from me!  We joke about how fun our ladies day out was!! haha.  She was such a trooper!! It was her first blood donation, and she did it!!

A couple of hours later the lab called and said that we've only collected 0.7 million, with the goal being 2-5 million cells.  Because I was under 1 million on the first collection I have to take another drug called Mozabil.  Side effects include....nausea, diarrhea, and insomnia, and yep folks, I got 'em.  But, if it means I will get enough stem cells for transplant to save my life, well so be it. I am grateful!!  It was a bit of a wild goose chase to track down this drug in Atlanta rush-hour traffic, but I've got a stellar healthcare team that knew I needed this tonight.  Amazing people.  I realized later that part of the reason it was so hard to come by is that it is $6500 per SHOT!!!  And I might have to have 2 more!  yikes!

Patty and Mary came over for the second time this week.  Our work is feeling extremely sacred and powerful, and I LOVE those women dearly.

So that puts us to now...I did sleep for a few hours tonight.  I am waking up every hour with hot flashes, this has been going on for over a month now, so I am getting used to that.  But I guess the Mozabil put me over the line with the sleep disturbances...

It is 5 AM now.  In an hour I wake Michael up to give me a double dose of the nupagen, and mom will be here at 7 to pick me up to take me to the clinic.  Wish us luck for more stemmies!!

Good night and much love!!
Evie