Some folks are wanting to know more. Others are not so interested in the details. We thought we'd put it out there and let you choose whether or not you want to read it. This whole journey has been quite fascinating from a scientific perspective, but sometimes it's hard to remain objective. After all, this is a loved one we're talking about. And there are always risks and unexpected twists and turns. We're hopeful that Leila will avoid all those obstacles and sail through this with relative ease. If you want to know more about multiple myeloma here's a very good overview.. https://www.mymyelomateam.com/resources/multiple-myeloma-an-overview
Posts
Leila wrote this last Frida, Jan. 27, but forgot to post: Hello friends and family- Thanks for your comments here, text messages, voice mail messages and calls. Today, I have something significant to share - I am now free to floss my teeth again. When one's platelets are low blood doesn't clot so well. So in addition to avoiding infection at all costs, I have had to be extra careful about any little nick or cut, else I might bleed out. I figure if women have babies, this woman can go a few weeks without flossing, without trimming nails, and without blowing my nose. Now, that my platelets are at normal range here's my summary of these abstentions. I'm picking up the floss and it will never leave my side. Ever again. Not even for just one night will I let that ritual get disturbed. On the nails, I've asked Kristin to help me with all 20. Platelet counts chart Jan 3-22 Seems that the big doses of steroids have caused cataracts to begin forming and my eyesight is ju
01.18.2023 Day 13 It feels sooo good! My numbers popped up today just as they said they would. Yesterday 400, today 1100. Still way off from the norm of 140,000, but it's a start and an indicator that the stem cells have engrafted. There is nothing like the creaks and groans of our home. Familiar sounds, familiar smells, familiar surroundings pull me back into its cozy bosom. If you've ever been to our house, you know we have decorated in some pretty bold colors, and I was so happy to see the mango, asparagus and tomato soup colored walls. It felt really good to get back into the kitchen to putter and nest - there is a place for everything and everything has a place, instead of having adult diapers sitting next to the breakfast cereal in the window sill for all to see. Thanks to everyone for being a part of our journey these past few weeks. We still have a few more weeks of isolation until I have a stronger immune system. Kristin here - I am especially grateful to al
01.14.2023 Day 9 Now that Leila is starting to ever so slightly recover from the yucks, I'm able to reflect and enjoy some of the humor from the past few days. Here is a text I saw from Leila when I woke up this morning. She had sent it at 2:28 am. (Who can make any sense at that hour of the morning): "we need ti dhoe these i. Another bag of plrelardm since I'm bleeding sign. In the nose again." Was I supposed to understand that? She's so precious when she's tired. My guess is she was trying to dictate the text but google didn't understand due to her incredibly dry mouth. It's so dry her tongue sticks to the roof of her mouth and her lips get glued together. Not sure what's been causing it, but it's been bad for days. No matter how much she drinks, what she drinks, or how often she uses the spray they've given, nothing seems to give her much relief. She sounds kinda drunk when she talks. Fortunately, she doesn't get mad at me whe
Day 8 01.13.2023 Friday the 13th WBC 0.0 Neutrophils, eosinophils, basophils, lymphocytes, monocytes, macrophages - all nil, nada, zilch, zip, zero RBC 3.4 Platelets 3.0 They gave her a bag of platelets today because her nose started bleeding. Nothing there to help it clot. What does it look like when someone has minimal blood? This was yesterday: This was this morning: In actuality she's looked like this the majority of the past 3 days: When asked how she was feeling, Leila told the nurse, "I feel like I am on my period, with the flu, and I ate bad sushi last night, after running a marathon in high heels." Nothing like some good imagery to help us understand. So, maybe she hasn't totally lost her spunk - it peeks out from time to time throughout the day. They switched her to phenergan for the nausea today and she started having wild dreams, talking in her sleep and having mild hallucinations. But it kept the nausea at bay. Guess you have to choos
Day 5 January 10, 2023 For days now we've been walking in circles. I feel a bit like a zoo animal. You know how they walk the same path over and over and over, wearing away the grass, breaking the tree twigs, leaving their mark on the earth. We are certainly doing that here walking around and around the nurses station. Since Leila can't leave this tiny unit there is nowhere else for her to get the needed exercise to maintain her muscle strength. Although at this point I don't think she wants to wander too far from her bed. The fatigue and weakness is increasing exponentially. I did get outside for a walk midday to get some fresh air - it was a gorgeous day! Hard to believe its January out there, until I see all the bare, brown trees and gray grass. It's been kinda boring the past few days. Although, I love hanging out with Leila, no matter the circumstances. Nothing new to report, other than her numbers are dropping precipitously, as expected. We
Leila here: Don't get too excited. This shot was taken on Wednesday and it's now Saturday evening. I'm fondly remembering that time and trying to duplicate it in my hospital room. We thought it might be nice for you all to hear from me directly today. The only problem is that I'm not sure what to write. It hasn't been a great day, but far from horrible! I bit my lip while eating lunch which ticked me off, since it's the very mouth tissue I worked so hard to keep icy-cold on Tuesday so it wouldn't get such a negative impact from the chemo. Here's hoping for a quick heal overnight. The queasies have crept in, but nothing the anti-nausea med isn't taking care of. I exceeded my walking goal today, with Kristin's encouragement. They have so much stuff sitting in the hallways its hard to walk and find a steady gait - I'm always having to dodge a bed, a computer cart, other people, chairs, tables, etc. During rounds I remembered to ask "How
Numbers & Waiting 01.06.2023 What we are waiting for? The next step in this process is for Leila’s blood counts to “bottom out”. Every morning at 4am they draw labs and track those numbers to monitor blood counts. There are three key numbers they’ll be watching as Leila blood cells die off from the chemo. This will occur over the next week. White blood count is currently 10.8 Normal is 4.1-10.8 They will drop to 0.0 which will wipe out her immune system. ( Hence, no visitors and the need to quarantine until she gets her WBC count back up.) Hemoglobin currently 9.8 Normal is 11.2-15.7 Leila’s will drop below 7, at which time they'll give her a unit of RBC's to aid recovery Platelets currently 218 Normal 140-370 Leila’s will drop below 10, at which time they'll give her a unit of platelets. Today she felt great. Walked a lot and did tai chi. Is ea
Leaky Faucet: Drip, Drip, Drip Day 0 01.05.2023 Happy Stem Cell Birthday, Leila! You did great! Stem cell re-infusion went very smoothly today. 2 bags 140ml 4.2 million stem cells returned The nurse did a great job so no side effects - except for smelling like creamed corn (that's not rotten stem cells - it comes from the preservative they use). Talk about bad breath - whew!
Day 0 Stem Cell Replacement Day Leila receives her stem cells back today! We invite the cancer cells to graciously take their leave and dissolve back into the Light, making way for the plentiful growth of nourishing new stem cells to sprout healthy new blood cells.
Leila again - Hair grows back. That's what I say to Kristin every time she cuts my hair. A couple of weeks ago Kristin asked Dr. Emmons what are the chances that my hair won't fall out from the high dose chemo. His answer was short - miniscule. (I will ask her to add her reason for asking). Based on what I've read and heard from my Friend4Life myeloma buddy, Peggy, I will lose my hair. Peggy told me nobody bothered to warn her before her procedure. Ugh. Anyway, I've been trying to prepare myself for this eventuality. I appear ready. I say I'm ready. However, I am NOT ready for the chemo to cause the impending baldness. I don't want to wake up some random morning in the next couple of weeks with hair all over the pillow, or shower floor. I want to lose it on my own timing, supported by a few loving people. The day is today, early afternoon. The method, barber's clippers. I hope to morph through several different cuts. And, despite nearly everyone asking for
Leila writing Whoa, yesterday felt like a regular Saturday. Normal feels really good. We went to a potluck lunch with our tai chi "framily." It was so good to do a set, the 108 moves, together before we ate. It still amazes me the magic that seems to happen in my body moving in the same way that I have since 1994. Who would think something could keep my interest that long - 28 years? I've often wondered why I ended up with cancer after all that tai chi practice. Who really knows where it came from, and it doesn't matter to me. What I am sure of is that my diligent practice has helped me through treatment, especially after retiring. It's something I have and can do as long as there's a bit of room, Wintertime has me practicing in the living room at the front of the house. When it's between 50-85 degrees I enjoy those early, and usually dark, morning practice sessions on the front porch. Retired and still waking up at 5am. Once a morning person, always a m