Rejection

Do you get sick of happy faces. Here's a sad one. Dr, Stephens just called and said the Juno lab has rejected our application. It is the PBLL that was the final decision. It was our last chance. Dr. Stephens will check with MD Anderson or Mayo clinic, but no one wants to try to cure a rare and obsure disease. We are distraught!  There might be some more chemo that could help for a short time, but it is not looking good...

Blood, Pain and Tears, and a dash of hope

I wasn't well enough to go to church on Sunday, but I was happy to receive visitors as I sat in my recliner with a heating pad on my back. The idelalisib (chemo drug) is causing me muscle pains in my lower back, my shins and calfs and thighs, as well as my knees, and now my ankles. The pain ranges from a 3 to a 10. I try to walk some, and while I look very limpy it doesn't hurt much. But afterwards it hurts a lot! It was nice of Barbara and Kent to commiserate with me. Happily, my WBC is steady at 193.

On Monday we had doctor visits with Dr. Stephens and Dr. Couriel. They are both very happy I will be starting the CAR-T study on Friday. I am happy, too1 I have to lay off the idelalisib for two days preparatory to having my T-cells harvested. I hope that helps my legs and back feel better.

I had 26 vials of blood taken on Monday. That was a record for me! I also had an EKG and an echocardiogram. The echocardiogram showed that my heart wasn't pumping as strongly as it was last April. I went from 65% to 45%. This is also a result of chemo drugs. I'll be meeting with a cardiologist to see if we can do something to get it back up to snuff.

All my paperwork has been sent in to the Juno lab. We should hear today whether they accept me or not. Keep your fingers crossed for me!

In the meantime, Ed is taking good care of me. This morning he made me Western omelette to eat in my throne chair I love him!

Picard and T-7!

We were in a good mood to watch Star Trek Picard Thursday night. My WBC was stable at 195 and things were looking up. Plus, the excitement of watching our favorite Star Trek captain again!

We had some Bjoran hasperat (veggie rolls) and Borg cubes (chocolate rice crispy treats) for snacks, as well as as Klingon Blood Wine, Romulan Ale, Ferengi Slug-O-Cola and Hue-Monn Root Beer floats to drink.

Picard was great, and fed our Trek-less souls! It's great to be back in Star-Trek land. The only sad part is we have to wait for weekly installments!

We were happy to have fellow Trekkie Bishop Shippen join us. He got to kill to birds with one stone: enjoy a new Stark Trek series with friends and visit the sick (me) at the same time! He even dressed as Picard for the occasion!

In other sickie news, the long dormant nodule on me left arm is starting to grow again! The one on my right hip is large and uncomfortable. And I am out of breath most of the time.

GOOD NEWS! Huntsman called yesterday and said they were able to move my leukapherisis (that is what the call the harvesting of my T-cells preparatory to treatment) from February 19th to January 31st! We are so happy to get started on treatment. It is also scary and nerve-wracking! Next week we start with lots of meetings with teams, doctors, and lots of heart and lung tests. We are now T-7!

Ice Castles and Good Labs

My big outing of the month was to see the Ice Castles in Midway yesterday. I rested all day and took a chair with me so I could sit as much  as possible.

It was fun being outside and watching everyone have fun. The weather was about 30 degrees and no wind--perfect for going down ice slides!

Clementine didn't meet the height requirements for one of the slides, so I just parked my chair next to a heater, and we enjoyed bonding while the others stood in a very long line waiting for their turn.

My labs today were a happy surprise. My WBC went down from 199 to 190. My LDH also went down, indicating that this is not a blood draw fluke. We were so happy that I didn't break 200!

The City of Hope cannot get me into their Juno trial because it excludes BPLL (my leukemia), and they could not get me into their in-house trial before the 17th of February, which is when Huntsman hopes to draw my blood for the trial. They also said that they had had poor results with BPLL patients on their in-house trial, so would not recommend it for me. Here's hoping I can keep my WBC in control for another month. Today is T-27!

I got a nice video of Ed, Brittany, John and Mabel coming out of the long slide yesterday! It felt great to be a part of life again. I'm still out of breath, but not quite as weak as last week. That and a little Immodium made the whole outing possible!

Tale of two bulbs and a call from the doc

My big outing this week was to Sam's Club with the family. I can walk okay as long as I don't have to stand in one place, which is unbearable, so Clementine and I took a little rest on the sacks of flour.

While we were sitting there the doctor from the City of Hope called me. She said they will see if they can get me in a CAR-T trial any early than Huntsman's date of February 17th. She's said she'd call me back on Monday. Which she won't, as it's a holiday. Hopefully, we'll find out on Tuesday.

I also had a nice rest with Mabel on a couch at the store. I keep hoping this chemo tiredness means the drug is really working well. Every blood draw is new hope. On Thursday my WBC went up to 199. I was thrilled it didn't break 200, but would be even more thrilled if it would go down!

I'm hoping to be like the amaryllis on the left, and surprise everyone with my ability to thrive. Last year my ministering sister gifted the bulb to me for Christmas. It was beautiful, and after the flower died I put the pot on a shelf in the garage. I didn't water it. I received a new amaryllis from the same ministering sister this year. It (the one on the right) is doing fantastic. But when I came home from labs one day I could see the old one was also doing fantastic. 10 months on a shelf in the garage with no water. Go figure! We brought it in to grow with its friend! I wonder which one will blossom first?

T-34 and counting

This shot is from January 1st. It is out of order, but I like it! Ed and I had a bit of a snowy day driving up to Huntsman yesterday. It turned out to be a long day, but the sun finally came out. Here's the low-down.

I can start the CAR-T treatment on February 17th at Huntsman. That would be the day they draw my blood. Then you wait 3 or 4 weeks to get your new T-cells. That would make today T-34. My WBC went up to 178 yesterday. We could change drugs, but we're hoping this one will help us limp along till we try something else. There is no guarantee with any drug, and the other options have some serious side effects. If I go up at the rate of 5k per day, I would be at 348 by the time they draw my blood and then we still have to wait for weeks to get the new T-cells back. I didn't want to ask Dr. Stephens if there is a limit to enter the study! I've been up to 585k before, but don't want to do that again!

City of Hope in California said I can have a consultation on January 27th. I'm waiting to see if they could beat the February 17th date for the initial blood draw or not. It's a race!

I also had such pain in my left arm this week that I had an ultra-sound to see if I had a blood clot. No, I don't. It seems like the pain is from the radiation. I have to hold my arms above my head in a very uncomfortable position, and it has become unbearable. In the meantime, I finished the radiation on my left flank and we've cancelled the radiation on my right flank, as there is a limit to having radiation before CAR-T. I won't be sorry not to be tortured anymore on the radiation table!

In an attempt to help Ed have a life while Judy sleeps (which is quite often), Brittany and John are introducing him to Sea of Thieves, a game in which you can learn to express your inner pirate. It has been fun for him, although he thinks he's a pretty pathetic excuse for a swashbuckler! It is a group game, and he even had to buy his own microphone headset to join in on the fun! 

Last recording and Stake Conference

It's a wrap-wrap! We finished up with all our Christmas recording Thursday night. Ed even directed the last few notes as he monitored the input.

Our last recording was of Ellis and Marti Nuttall singing  Il est né,le divin Enfant. 

Brittany's in-laws both speak French and have nice voices, and we've been trying to record them for a couple of years now, so, it was nice to finally do it! 

On Sunday we to watch Stake Conference on TV! They had a special link for shut-ins. That would be me!

I don't have the strength to sit in a chair for two hours, and Ed was lucky enough to be married to a shut-in, so we holed up together on a very snowy day to watch church together!

My WBC had gone up to 153 on Thursday. Not great, but the rate of acceleration has slowed down.