13: Another mixed bag - some good, some not so good. Life goes on.

The healing powers of the great outdoors

I was able to get in two, two-mile walks at Bobcat Ridge in the past two weeks. Didn’t go very fast or far, but it feels so good to be outdoors and get some exercise. Thanks to Irene Shonle and Cindy Catherman (and Vivi!) for the inspiration to get out and do it!

Stunning clouds at Bobcat Ridge

Anne!

My best friend from our NJ school days shows up tomorrow if today’s snowstorm doesn’t delay things too much. She’s lived in southern CA so long I’m not even sure if she owns any shoes OTHER than sneakers, hiking shoes and sandals. She’s coming to attend my mom’s memorial service on Saturday, and stay with me while Joel and Jay make a quick visit to our place in NM to check on things and play a bit.

Anne and I from 1982 in Boulder.

Critical levels

Two of the six markers in my twice-weekly CBCs (complete blood counts) have been holding relatively steady (platelets [blood clotting agents] and neutrophils [first line of immunity defense]) - until today, that is. Both have dropped again, so back I go onto the full regimen of prophylactic meds. The other four (white & red blood cells, hemoglobin, and lymphocytes) continue to drop, but at a rate much slower than  initially. I’ve now gone 3 weeks between whole blood infusions (where it used to be weekly or every other week). This is pretty normal as we’ve been told that the RBCs are the last to show improvement. They’ve been giving me magnesium (Mg) every Monday but are now adding potassium (K) to make sure I maintain adequate levels of these two key electrolytes.

They’ve also now added a monthly pentamidine inhalation treatment which is used to prevent a serious form of pneumonia, Pneumocystis carinii. I sit in a tent in the Respiratory Therapy unit at Poudre Valley Hospital, breathe in the medicine through a tube in my mouth and drool incessantly until the treatment is over. Great fun, indeed!

New lucky llama

A cousin in Mississippi sent me a “Llucky Llama” in a package of goodies last week. Unbeknownst to her, the first LL had just been passed on to a neighbor undergoing treatment for throat cancer. I see this new guy as one more talisman and good luck buddy to get us through this journey successfully.

My new llucky llama from Charlotte

Now you know - the Star Trek edition #5

Last Monday while getting an infusion, I looked around the center and realized how many of us sitting in those chairs, surrounded by poles and bags and support people, have ports implanted in our chests, just like the Jem’Hadar soldiers of the Dominion in ST Deep Space Nine, circa 2372 in the Gamma Quadrant. It was used to give them doses of Ketracel-white. “Ketracel-white (or simply white) was a chemical compound created to be an addictive narcotic that contained an isogenic enzyme. One of the active ingredients of white was yridium bicantizine. The Jem'Hadar soldiers of the Dominion were genetically-engineered to lack the enzyme which white provided, and required frequent doses of the drug to survive. The white also provided all the nutrients they required, alleviating them of the need to eat or drink.” So essentially, they couldn't survive without white, and without these ports it could not be so easily administered.

A Jem'Hadar soldier and his ketracel-white port

In our cases in 2024 in the Alpha Quadrant, these ports also allow life-saving substances to be more easily administered. I guess we can be considered soldiers in the fights for our lives. I'm always thrilled when real life mimics the technology of science fiction!

New test results today - not where I wanted to be, but you can't win every inning, I suppose.

Click to play: Wrong Way Feelin'

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.