Well, the days of stable counts are over for now. My WBC’s, RBC’s and platelets are all down and requiring transfusions to sustain me.
The doctors are puzzled, so I am having a bone marrow biopsy on Wed. to see what is causing the change and to suggest a treatment plan.
This is so weird. It may be my auto immune disease or a new disease. Time to find out what we can do to get this back under control.
I feel ok and I look fine according to everyone who see me. But, something is happening and it is time to find out what!!
I had a great visit with my son from CA over the weekend. And I’ve had great talks with my daughter and news she’ll have another business trip here in Jan. They both have taken time to visit and support me!! I’m so lucky to have them. Family definitely helps! 🙂
Thanks to a wonderful, considerate, capable daughter for keeping my blog alive. I have not felt like looking at a computer, let alone doing a blog or email. I had Peter clear my email at the beginning so hopefully I didn’t loose anything special from you.
The recuperation time has been more difficult than expected. The virus wiped me out mentally, physically and emotionally. I’ve been home 3 1/2 weeks and starting to regain my strength. I was using a walker, boo. I’m taking short walks outside in the cool mornings and my strength is growing.
About the transplant. I go from lab work results to dr. visits with nervous anticipation. The new donor bone marrow seems to have shut down, but there are great increases in the platelets and stable red blood count ( I’m still very anemic) and I haven’t needed transfusions in over 5 weeks. That is good. Tests being run regularly. The biggest concern is my white blood cell count. They seem to be stagnant. So I am taking antibiotics and Neupogen to stimulate my bone marrow and WBC count. Maybe it is taking a while to get the donor bone marrow to start again. I may be one of those “late bloomers.”
I want to thank Kerstin for her help these past weeks. I won’t be doing daily blog entries, but as things develop, I’ll keep you informed. The doctors still have an option or 2 left, so we pursue these with great hope.
Kerstin comes to visit Sat. and we are both looking forward to the reunion!!
Love to you all and thanks for your support and prayers.
I have good news to share — my Mom is home from the hospital! It was definitely a longer stay than she’d hoped for (more than 3 weeks), but she made it through and was released last week. This virus seems to really have done a number on her though. She’s still very weak and definitely needs to take time to build up her strength again. When she was in the hospital for the preparatory chemo, she was a walking machine! Two or three walks a day, often 45 minutes or more. It was good that she was able to maintain and build her strength then, and I’m sure she will get back to that point soon. Chatting yesterday, she said it could take twice as long to regain the strength as it did to lose it. So six weeks and she’ll be back in fighting shape!
Very excited that I’ll get to see her very soon, by the way. I will be in Salt Lake City for a work trip at the end of July. I need some Mama-time!
So, other health updates. It seems it really was the virus – and the treatment of the virus – that was so hard on her body. Turns out the medicines to treat the virus had a negative impact on her kidneys, which required more meds and IVs to regulate, AND they had a negative impact on all those healthy donor cells that are trying to rebuild. So her peripheral blood hasn’t increased a great deal, but the hope is now that she’s off the virus medications that the cells will keep doing their thing. The marrow was still 86% donor (which is good), and now we’ll wait for the marrow to keep pumping out the healthy cells.
Her platelets were up, which is also a good sign. That was one of the scarier moments when I was there during the preparatory chemo. “Regular folks” have 100+ counts on platelets (not sure the units, sorry), which are the cells that help clotting. If they get low, there’s risk of extensive bleeding, so bumps or bruises (or even sneezes) can be quite dangerous. My Mom, being special, was closer to 20. And when she got *really* special down in the single digits, that caused a little agita amongst the staff — and for my Mom when they wouldn’t let her out of the room for her walks. The doctors always had a plan, but I wasn’t a fan of those low platelet counts. I know there are a thousand other counts that are tested, tweaked and managed, but for some reason the platelets stand out for me – maybe because I understand it more than some of the others.
Oh, and last count, her platelets were up in the 60s! Go, Mom!
Not sure when she’ll be back on the blog. As I said, she’s still really weak and her focus needs to be on rest and recuperation. I’m sure she’ll be back soon – and until then, I’ll stick around. Thanks for the love and prayers,
P.S. I’m cheating a little on the photo — that was from my last trip, but I think it’s pretty AND you can see one of my Mom’s sassy wigs…
I’d love to report that my Mom is at home resting and recuperating, but unfortunately, today marks three weeks for her current hospital stay. The fevers are getting less frequent and less severe, so it really does look like she could be going home soon. Fingers crossed for tomorrow!
On the positive side, they did allow her a short burst of freedom yesterday with a 4 hour pass. After 20 days of fluorescent lights and hospital air — as filtered and pure as said air may be — you can imagine she was very excited to get into the sunshine! I haven’t received the full after report, but she and Peter planned to find a nice spot with grass and flowers to relax for a bit, followed by dinner before heading back to the hospital. (And if I know Peter, I’d guess that dessert was also involved. Gourmandise? Baby bottoms, maybe? Just guessing… 🙂
Another positive development is that she is now allowed to drink water. How is that a positive development, you may ask? Well, for the first 2+ weeks, she was limited to only drinking electrolyte replacement drinks like Gatorade and juices. All day. Every day. I don’t fully understand the details, but apparently her internal chemistry is easily thrown off, including things like her sodium level, so water was verboten. If you know my Mom at all, you know she’s a big water drinker, particularly with the Sjogren’s Sydrome (dry mouth), so this was another annoyance that she really didn’t need. The dozens of pills she’s taking daily is already a chore, so not being allowed cool, fresh, clean water was a royal pain. She was up to a liter of water yesterday (which she very carefully rationed!), hopefully increasing incrementally as she gets closer to going home. Yet another reminder of the little things in life that we take for granted!
One final update — the results from the last bone marrow test are in, with mixed results. The donor bone marrow has engrafted well, and the doctors seem happy with the progress there. However, the peripheral blood levels — how much of the circulating blood is the donor blood — has not increased, and in fact decreased fairly substantially. There are many discussions about next steps and possible solutions, and hopefully we’ll have news in the upcoming days. There’s a transplant center in Seattle that has some of the world’s best and they’re consulting tomorrow. They may continue to wait and see – give the marrow more time to do its thing. Another option includes getting a transfusion from the original donor; I believe this would just be a blood transfusion, not necessarily more stem cells, but I don’t have all the info. In the meantime, my Mom can get HLA-matched transfusions if needed to keep her blood levels up. She received two units of red cell and one unit of platelets during this hospital stay.
So keep the loving thoughts and prayers heading her way. Thanks for checking in…I do pass along your comments, so feel free to leave greetings for her here!
It’s not what you imagine. That temperature thing I had going since Saturday finally reached 100.4 F and I called the clinic. I was instructed to go directly to 8th East where the bone marrow transplant ward is.
Now they told me, since I ‘only’ had a borderline temperature, no other symptoms, they would probably take blood cultures, blood work consult with the PA and doctor and let me go home. I tried to make sure that happened by eating a piece of cheese cake a friend brought over. If I didn’t eat it, it would have been left for Peter and he had his own.
They put me in a room, just in case they had to admit me. It was spacious enough, but the bed and chairs were harder then I remembered and I prayed mightily not to have to stay. Peter and I rotated clockwise from the bed to 2 chairs to try to get comfortable. 🙁
Lab work was the same as Monday, no sign of infection there. But, my doctor decided I should get a IV antibiotic anyway. 11:45 PM. It took an hour for the pharmacy to mix my drugs and another hour for the infusion. 12:45 AM. Peter finally got comfortable as possible on the bed and I wiggled around from chair to chair. Infusion started at 12:45 and I tried not to watch he clock. Ever been so tired you couldn’t sleep? That’s where I was then. I closed my eyes and it helped and the hour passed. Monika came in, disconnected me, and out the door we ran, never looking back. It was just before 1 AM.
Well, I was dancing under the stars as we walked to the car, prime parking that hour of the night! Yippee. I got to go home. The unique part of the situation was that I had an appointment that same day ( since it was after midnight) and I was trying to get my temperature to stay low till then. No way.
We were home by 1:30 AM. I just got into bed. Had to get out of street clothes hours later when I was too warm. Up for meds at 6 AM and 8 AM to get ready for doctor’s appointment! That’s my next blog.
I’ve been complaining to doctors and Peter about not being able to stand straight and am always slouched over. And it hurts not to be able to stand straight. I asked about shoulder harnesses, but no more meds. They had no suggestions. This is the first time they failed me!
I’m afraid to call my dentist and thank him for the massage I get when I am in his office. His rates increased enough when he moved to his new state of the art facility and I don’t want him to charge me extra.
The chair just has upper shoulder massage movement and once my muscles are relaxed ( I must be carrying a lot of tension in my upper body, because it hurts like heck at first) then there is a slight softer lower back roller too. By time I get out 45 min later I’m like a marshmellow and could stand up straight.
Hint, maybe I need a massage! Well, I was willing to go out and buy a massage back for my chair at home, but I remembered Kerstin bought me one 3-4 years ago for my aching shoulders and haven’t used it in a long time.
I found it and laid on my bed and started with my neck. At 10 min intervals I moved it further down my back. First stop after neck was a big knot, lots of pain in my left shoulder area. The right was fine. I moved it 2 more times and found 2 more knots. ( you’d know by the pain of the pressure of that merciless golf balls rotating around.) One more position and that one was OK. But, I didn’t feel the cure until I stood to put it away and found I could stand straight. It’s been 3 days now and I’m still standing straight. So I’ll use it when I think I’m tightening up or treat myself to a real massage.
Amazing what a little observation and sensitivity to the Holy Spirit will do. He told me, hey you, think about it. I don’t always listen, but this time it was a real blessing
The battery was fully charged. No key. Do we hve to find a key? Handles stuck in still motion. It took Peter to guess to push green arrow to move forward and rotate the handlebars towards me to go forward. Press the yellow arrow to back up and the whole store knows there is an incompetent person on the isle. Off we go.
Peter has an extra cart in case my little one didn’t fit everything. Which it didn’t. Glad I used it though. The lanes were long and I had to go back to certain lanes to fine a extra item.
I was glad to use the cart. I wasn’t any more fatigued than if I stayed home. Just another adventure in Grandma Mohawk’s list of things learned during my recuperation!
Now, I could get hooked on shopping ( where would I put the goods ?) with this OXO baby. Either Peter and I could share cars or one used to carry the stuff!!
OK. I need some groceries and I still get fatigued when I walk too much ( like across the house.) All my chairs feel like stone to sit on. Must be sitting too much. I gotta get out, but, I get tired. That’s the dizzying situation in a walnut shell.
I could write a list including item, size or weight, color ( like peppers), quantity, specify best sale price, and add pictures ( that was Peter’s idea) and send him on his merry way. Tuesday isn’t the best free food day, except at Costco, and so that’s not a real draw for him. That’s Thursday’s trip. He loves senior lunch at Costco. Besides I need miscellaneous single items, like pickles. Without a picture, can you imagine how to tell him how to buy pickles? And having a shopping cart would not encumber him from finding strangers to talk to as the ice cream melts.
This certainly is not as needy as the starving children in Africa or the Diabetes or Cancer funds, but I need to keep us fed, so I can contribute to these needs, too.
So, I am going to try the electric cart at the store. I have a temporary handicapped permit. Don’t think it’s necessary, but I remember when we put Mutti at age 93 on one, and she was terrified and passersby had to look out. Actually, a snail moved faster. I’m sure I can handle it. Hopefully the shakiness in my hands and arms ( due to drugs which will be changed on Wed) won’t be an indication of my driving a straight line.
Looking forward to a new, temporary experience today. It’s rainy and a good thing to do on a rainy day.
P.S. Grandkids or friends kids who fit, ride free. Maybe I could rent myself out as a grocery store grandmother watching kid service? 🙂
Saturday was the first warm sunny day since Mother’s Day ( the day we should wait for in Utah to plant our garden.)
We Topsey Turvied tomatoes and oriental eggplant. Peter was so generous to hold the heavy bags while I placed the plants and sprinkles with extended release fertilizer. They are rather contagious to do. I could easily try strawberries if Peter doesn’t grumble too much. 🙂
Now in Googling pictures for this blog, I found something else topsy turvy that tickled my funny bone. I don’t bake cakes very often, but I am so tempted to try it. Being what t is, I know Peter would let me make it. Sweets for the sweet. 🙂
Now, sometimes the world seems it is topsy turvy. Even Mother nature can provide humor when necessary.