12: Still waiting...

I don't have a lot new to report but there have been some events in the past few weeks that are worth sharing.

I’ve now graduated to blood draws twice a week instead of three times/week. This indicates that things have stabilized a bit.

I haven’t needed platelets in over a month – perhaps we’re done with those transfusions?

Because of the cyclosporine treatment, I’m still needing magnesium infusions about once a week.

My red blood cells haven’t been responding, so I got a whole-blood transfusion just over a week ago. I’ve been super weak and have no stamina, so I’d hoped a bag or two of fresh blood would perk me up – it did for a few days and Joel and I got out for a few walks on nice days. I realized that what I really need is to get more exercise so that I can get my blood and oxygen flowing, but I’m so out of shape that it’s really hard to do much more than a short walk. 

A paradoxical situation from which an individual cannot escape
 because of contradictory rules or limitations.

Speaking of exercise, after a bit of discussion my doc agreed that I could start back to the pool again for self-guided fitness exercises. I'm still too immune-compromised to be in a crowded class, but he agreed that getting in more activity would be good for me physically, and I know that being in the water again will be good for my soul. Yay for the pool!

Speaking of good for the soul, my best from friend from forever ago, Anne, is coming to visit for a few days. I asked the doc if I could have a glass of wine with dinner with her, and he said, “A glass, yes, a bottle – no. You gotta live your life.” Yay for that!

Validation

Last Wednesday I was having a bad day and during my blood draw, my nurse Karen Briggs hung out and talked with me until the results were in. It seemed that nothing was going well, that all these drugs and feeling badly and not being able to do anything was leaving me  feeling completely helpless and frustrated. I loved her empathy in that moment. She didn’t try to make me feel that things would get better, and she didn’t give me false hope. She understood what frustration and stress are like and offered some constructive (destructive?)  ideas: go to one of those places where you can smash things (with proper protection, of course!), or just go somewhere and scream as long and loud as you need to. I now understand that sometimes you just don’t want people to tell you that things will work out - that everything will be fine in the long run. Reminds me of telling a kid to calm down when they’re in the middle of a tantrum- it never works. Instead you want people to recognize the shit you’re going through and validate your fears and frustrations and give you hugs and f-bombs in sympathy. Because that’s how you feel, and it’s real. Sometimes you just feel like you're alone and trapped.

Click to watch Beverly Crusher realize
she's alone in a shrinking universe

Spiritual connections

In an earlier post I talked about my friend and artist, Vickie Krudwig, and the amazing Phoenix Rising painting that she gave me. Well, her generosity abounds and continues with a meditation box that she just made for me because something inside told her I needed it . Here’s how she describes the box and her inspiration for the box:

“One of our very dear friends was diagnosed with a serious autoimmune blood disease. I felt helpless- I pray for her and her family and medical team. She has a fondness and connection to the Man in the Maze image, so I decided to make a small tabletop meditation box for her. The red and white beads and dots represent healthy red and white blood cells, and the circulating blood elements that are so important. I added my (Man in the Maze) earring to the center of the little canvas in the middle of the box, along with specific silver Milagro charms. I hope the box helps her center and feel peaceful.” Vickie and I definitely have a deep connection because she received the vision to create this box right about when my mom died, and she had no idea why the tug was so strong.

End of an era

My mother died on February 18, just 2 months shy of her 99^th birthday. I'd been visiting often on her last days, and on Sunday I’d planned to leave at 4:00, but as I went to say goodbye for the evening, I got the feeling that she wasn’t going to make it through the night. I sat back down on the bed with her, and 20 minutes later, she took two gentle, long breaths and that was it. She’d actually been preparing for this since before my dad died in 2010 – her memorial service was planned, her financial affairs in order, and most of her possessions had already been given away. When a person dies there's usually a million details to take care of, but in her case so much was already settled. And though these past two weeks have been stressful, I'm grateful for all her pre-planning. Her memorial service is March 16 in Fort Collins… it’ll be nice to get together with family, even under these conditions.

My mom - Laurane Thorn.
Obituary and memorial service information here.