Feeling the Love and a new ray of hope

I have been feeling the love through all your good wishes. It has really helped buoy me up the past few days. We stopped off at Barbara's house after labs on Thursday. It was nice to have Annette and Kent meet us there, too. I had the whole couch and a heating pad to myself, as my legs are still killing me!

It was nice getting special delivery flowers from Reagan in Maryland. It was also great meeting her much bally-hooed boyfriend who lives in Utah. It turns out he's just as nice as she said he was. It was also fun face-timing Reagan, who is practically perfect in every way (except for her love of iphones and her lack of love for Star Trek).

Everrt and Janet came over with some songs and a foot rub, both of which went a long way towards relaxing me and calming me down. We have so appreciated the outpouring of love.

Clementine, who will be 3 next week, serenaded me with her flute.

Mabel said my legs smelled minty fresh after Ed put some Aspercreme on them. (By the way it didn't help with the pain.)

Brittany did the crossword puzzle with us. My new sloth from Bishop Shippen was there to remind us that although the wheels were turning slowly, we would eventually beat this cancer back!

The kids love it when we do the crossword, as we let them watch Dinosaur Train.

LATE BREAKING GOOD NEWS, MAYBE. I got a call from Dr. Mato (unfortunate deadly name for a doctor) at Sloan Kettering in New York City today. He said they had a study that I would be  good candidate for, and if I could fly out next week, we could meet him and get the tests taken to submit my application. There are no guarantees, but this study does not exclude BPLL. It is based on a BTK blocker and is a pill that they have been having good success with. If you're interested here is a link: https://www.mskcc.org/cancer-care/clinical-trials/19-077.

We booked tickets for NYC on Monday and have an appointment on Tuesday. Brittany volunteered to go for Ed if he'd watch the kids. He passed on that. Our biggest problem is how I will withstand the flight if my legs don't get better in the next few days. We tried to get first class, but they were all sold out! I hope my seatmate doesn't mind some rocking and moaning!  We feel like a ray of hope has once again been extended to us!

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.

T Minus ?

We resumed our secret life at Huntsman Cancer Hospital again this week. We have appointments every day (mostly radiation on my giant nodule in my back), and sometimes two appointments! I got a nice beaded bracelet from Beads for Cancer. Another nice freebie to cheer us up in the waiting room.

On Monday we stopped by to see mom between appointments. She is doing great.

Her back yard is a mess. They finally started work on her new garage. Hopefully, it will be finished before we get any serious storms!

We had some funny snow melt in my back yard. It feels like a Salvador Dali painting. All askew, just like my life.

My new doctor, Dr. Stephens, is very enthusiastic about starting me on a CAR-T trial. Unfortunately, the lab in Washington that processes the T-cells is shut down right now, as they had an infection in a sample and are investigating what happened. The lab (Juno) says they will be back up the last week of January. In the meantime, we can see if I could be one of the first new patients when they start up again.

Sadly, my WBC has continued to rise and was 141 on Monday. All that hard work last year, blown in a few days! I continue on my new drug, Idelalisib, and it may start working soon. Or not. It might not have controlled by white count, but it has made me very tired. I have a hard time doing anything productive now. Fortunately, Ed is stepping into his old role and bringing me food on a regular basis!

Plan B  is to go to another hospital whose CAR-T lab is not shut down. The City of Hope (a well-renowned hospital in the Los Angeles area) creates their treatment in-house. We have contacted them and they will be calling me today or tomorrow to arrange a consultation. I wonder if they realize speed is of the essence here. We are likely to take whichever hospital comes through for us first. If my current drug is not working, Dr. Stephens has a few more ideas to help keep my cancer in control while we wait.

I feel like a ticking time bomb with an uncertain clock. We just have to beat the clock, but we don't know when the clock will reach its critical point! Hang on for more thrills and chills on the cancer roller coaster!

New Year's Day

We took pictures for next year's CD today. It snowed all day providing both a challenge and a nice back drop.

We also took pictures of the kids, which was a lot of work, but less so, as we took them separate from us!

They're pretty cute!

After picture taking there was time for the kids to play outside in the snow. Clementine's gloves were very soon covered in snow!

Hugo had a hard time navigating the deep snow.

Amanda enjoyed taking Hugo for a ride on the sled! I wished I had the energy to join them!

Mabel did a few runs with the other kids, but really enjoyed her solo run down he hill!

They came in exhausted and ready to warm themselves by the fire and drink a little hot chocolate!

New Year's Eve

We wrapped up the majority of our recording on New Year's Eve and celebrated by taking the adults to see Seussical the Musical at the Hale Centre Theater. Ed and I saw it a month ago, but loved it so much we had to come back.

We even had a crash course on Dr. Seuss this week, reading a book each night so the musical would make more sense to us. They use parts of many of his books. Some of them I didn't know very well, surprisingly enough.

Every year someone or several of us get sick at Christmas. This year a stomach bug ran through the family. We took turns complaining about it. I really thought my issues were to do with the drug I'm taking, but aside from the shortness of breath, they have been very similar to everyone else's stomach complaints. So, after our recording sessions we all had to rest up!

We have been enjoying watching episodes of the second season of Lost in Space every night. Including on New Year's Eve. I may have slept through some of the show in the evening, but woke up in time to toast in 2020.

Here's to 2020, and to hoping it's a little better than 2019, which turned out to be a pretty tough year!

My WBC has continued to rise, up to 88 on the 30th. We're hoping the new drug has kicked in, as I'm really feeling like chemo Judy again, and have enjoyed sitting in a chair more than anything. Tomorrow we'll have the first labs of the new year. Hopefully we'll get in with Dr. Stephens soon and be able to start the CAR-T trial before my WBC skyrockets!

Faux Christmas

We celebrated our family Christmas on the 27th. Crystal gave the kids astronaut helmets, which they loved. Hugo loved it but would neither wear it nor let anyone else wear it. He would wear his jet pack, however.

 Milo is a great baby, being happy to play with whatever toys are within his reach. Fortunately, his reach is limited, as he doesn't crawl yet!

Hugo did enjoy playing with the magnet men, though.

The girls also enjoyed the magnet men. It is wonderful to be so young and easily entertained.

In the afternoon Whistling Prairie started practicing for next year's Christmas CD.

It was good to be together again. We've been doing this for so many years, that the family really can  just pick up where we left off last year.

We also had most of the music and arrangements written out, which was great. I only had one really hard pennywhistle solo this year, which made my part very non-stressful!

The kids really want to get into the act, and especially love driving us crazy by playing the xylophone. We didn't mind Milo playing a little djembe occasionally.

We found other ways to entertain the grandchildren. They especially enjoyed the trampolines and the johnny-jump-up.

We also could get an hour of quiet time if we let them watch a movie.

On the 28th we celebrated my birthday again with a family meal.

I got a giant teddy-bear birthday cake, and Mabel helped me blow out the candles. All 66 of them! OK, they only had about a half dozen on the cake. Which was a good thing. I don't think we could have managed more. I'm starting to feel short of breath again, and appreciated Mabel's help!