Wednesday, January 20, 2016

Myeloma took my coffee away!

It's been so long since I've last blogged that I (almost) forgot how. Truth is, I've had a tough stem cell transplant recovery (thanks, myeloma! I HATE you.). As a result of feeling sick and tired, the thought of logging on to a computer and writing was just too much. That said, I'm doing much better now. Not fully recovered but getting close. It's been a month and, really, it is remarkable that I've come this far.

A few things that I've noticed from this horrible experience (which is different from my tandem sct's in 2012):

1. I struggle with eating. I'm nauseous when I don't eat, which makes me not want to eat. I have to remind myself that I (mostly) feel much better if there is something in my stomach. Except that nothing really sounds all that appetizing. Pickles are mostly good (not always, though). Ramen noodles were good for awhile until the last time I ate them and then threw up.  Shrimp is generally good, except I threw that up, too, one day. And saddest of all, I don't like coffee! I'm devastated because that was the one huge thing I looked forward to doing every morning-- stopping at a coffee shop and getting coffee. I still occasionally drink it but generally, it doesn't taste good. I hope my love for it comes back.

2. I'm officially too thin. I don't even want to weigh myself. Strange feeling looking at myself in the mirror and thinking, "eat a pizza." We went to Ruth's Chris last night for my dad's birthday (I have THE BEST dad on the planet, by the way) and, honestly, everything tasted delicious and I am happy about that (though I can't eat there every day). I threw up about an hour before we headed out so my tummy actually felt normal by the time we left. I popped a Zofran and I ate a lot-- bread, ahi tuna appetizer, mashed potatoes, a huge salad, and a steak. I also got chocolate cake and bread pudding for dessert. Signs of better eating days? I hope so. I love food. I want to enjoy eating again.

3. I have finally allowed myself to just rest. I resisted this for so long-- always running around, staying busy, and never allowing a dull moment to enter my life. This time around, I gave up doing almost everything. I got a house cleaner, I allowed my amazingly supportive husband to take over kid duties, my mom rubbed my feet almost every day for weeks, I rarely cooked, and I took long naps. I needed it and it was ok to just let things go. No one fell apart, life went on.

4. I have some psychological trauma from my long hospital stays. I soon realized that I did not want to be alone. If my husband was gone for any reason, I'd go to my parents' house until he got home. What's up with that? I'm mostly over it, but not entirely.

5. I seriously need a vacation. And that's what I'm spending my time on now: planning two trips, one for Bill and me, one for Spring break for the kids to come, too. Somewhere warm. Somewhere that I will relax and do very little, which takes such places as Europe or South America off the table, because if I go to those places, I'll be touring instead of parking my butt on the nearest beach chair and sleeping in the warm sun.

6. I regret having this stem cell transplant. I will never do another again.

And there you have it. I'm doing well. I'm at Costco many days, I meet up for lunch with friends, and I'm healing-- mentally and physically. I'm back at church and Bible study, two places that I love and where I feel welcomed, loved, safe, and spiritually fed. I am enjoying peaceful time with my family. And I am trying to stop this nauseousness that I still struggle with every day. That part is horrible and one of the reasons why I regret agreeing to another transplant (I should have been at U Penn in their Car T Cell Therapy clinical trial, or at NIH's) and why I'll never do another. I still have awful acid reflux that hurts. But each day there is progress.

I took my daughters snowboarding and skiing twice this past weekend. I purchased season passes to Park City/The Canyons for them. Because I am not yet physically strong enough to ski, they spent the first day in all day ski school, and the second day, I sent them off together, without an adult, for the first time. I was thrilled that they had an amazing tine together. But my goal is that in two weeks, I will join them on the slopes. Mommy-daughter time in the fresh mountain air and amazing snow that we've been blessed with this season. I want it, I crave it. Wish me luck!

XO,

Lizzy