Lunch in Payson

Ed and I picked up mom and met Kent and Annette for lunch at Dalton's today. It felt good to get out and enjoy socializing. Ed says that I always perk up when people drop by. Talking is the best tonic for me. I not only get energized, but the effect lasts for hours afterwards! Somebody should stop in to see me at 7 a.m. every morning, to get me moving for the day!

Ten Days without Mabel

Mabel has changed a lot in 10 days! It was amazing watching her actively play with toys last night! She took the toy people out of the box and put them in the silo, and kept moving them around. She's really growing up!

She was sweet to take a little time out of her travels to jump on grandma and sit on her lap for a few minutes! I missed her cuddles when I couldn't see her!

Coda did NOT miss Mabel! She said, "What is that attention seeking little person doing back here again? This is MY domain!" She also gave me some good cuddles!

Feeling Sassy!

I woke up today feeling almost normal! It felt good to have some energy again! The PICC pain is subsiding into just one spot in the arm, and the medicines I was on seem to be wearing off! I enjoyed going to church and seeing all the people who have been so kind to me this week!

I also enjoyed opening a box of love from Maryland--5 sassy caps! A color for any outfit! I love the softness and the warmth, as well as the love that came with them! I know I haven't lost any hair yet, and if my prognosis continues to improve, I may be able to be treated without chemotherapy! I'm wearing the hats with or without hair! They are a reminder of the love and prayers poured out for me this week! I believe our prayers are being answered! Thank you all so much!

Alpine Cove Ward Christmas Party

I was feeling good enough to venture out today, and was happy there was somewhere to go--the Ward Christmas Party! It was done up right with a Polar Express theme!

They had a nice program with some narration and songs talking about the story of the Polar Express and tying in the story of the Christ child and our challenge to believe.

Bishop Shippen (here with Emma), dressed up as a train conductor and set a merry tone to the evening. It was catered by Dave's BBQ, so the food was terrific!

It rained heavy all evening, but happily, was too warm to snow. It made a beautiful evening, and we were happy to share it with our many new friends.

Ed finally had some time to put up Christmas lights outside today. Here is a holiday view from our front porch!

Malawi and Halwani

Dr. Halwani at Huntsman Cancer Institute concurred with the direction we are currently going with LDS Hospital, which is: take a step back, get off the meds and wait. If I felt fine before I will probably feel fine again in a few weeks when the meds wear off.

We stopped at Malawi Pizza for a late lunch on the way home. I get Malawi and Halwani mixed up. One is African and the other Hawaiin!

Ed is also exhausted tonight, but has been my rock through this 4 week ordeal. (Seven weeks if you count the broken wrist).

He spent the morning sorting my pills back into bottles.

There are only three left standing, and one is a vitamin D!

Ed has filled out all my paperwork in seven hospitals:

American Fork
Timpanogas Regional in Orem
Mountain Point in Lehi
LDS Hospital in SLC
Mercy in Iowa City
Huntsman Cancer Institute in SLC

That is so painful, and I appreciate him doing it for me. He ALMOST has my social security number memorized. I think that is good. I've known his by memory for 35 years now!

He has also been a semi-physical therapist, encouraging me to not give in to the urge to walk hunched over, protecting both my withered arms.

I'm doing some therapy by myself on the wrist (until I can get in with a real therapist next week) and applying a heating pad to the point of insertion of the PICC line on the soft flesh of my upper right arm. But, I can actually feel the ghost of the PICC line up the arm and into the chest! I imagine time rather than therapy will heal that wound!

Ed calls me his T-Rex!

Dr, Halwani stood by his pathologist at the University of Utah and his report of BPLL, but was interested in seeing the new report from Mass General when it comes in. He also said even if I had BPLL he would probably treat it as a form of CLL and monitor it. If I was feeling fine he would just have me have  labs drawn more often than a regular CLL patient.

He also said that although I am atypical, that doesn't mean much. They would just watch and see. Maybe no treatment is the best option. And if I am treated, perhaps a "novel agent" like Ibrutinib, might do the trick. It is not chemo and has no chemo side effects. You just take a pill at home! He said my good health was an indicator of how they would treat it!

I felt happy enough that I ate two of the yummy sugar/gingerbread cookies the Young Women brought over last night! Apparently, my appetite is the first thing to come back as the medicine wears off!

I'm excited, looking forward to feeling good enough by Christmas to enjoy the time with with my family. The girls (and boys) are coming out to make a new Christmas CD!

I wish this month had not been so awful, but I am grateful for the many things I have come to know during our trial. I also hope the worst if over!

A Reprieve!

I started out the day at Dr. Stock's office (my orthopedist) I was happy to wear my new, pretty mask, which I thought almost matched my shirt!

GOOD NEWS: I don't have to wear the brace anymore!

BAD NEWS, I need some serious therapy to regain my range of motion!

We had an afternoon appointment at LDS hospital with Dr. Mitchell, who explained a lot of things to us.

The initial UofU pathology report indicated BPLL, which was why I was hospitalized last week. The pathologist at LDS hospital, looking at the same slides believes it is probably an atypical CLL, possibly with a TP53 variable.

They recommend getting a new report from Massachusetts General to confirm the diagnosis. We are still waiting for TP53 results.

GOOD NEWS:  They took out my PICC!!!!! They took me off most of the medications, including the dizzying Hydoxyurea! I am no longer neutropenic, and can go out in public without a mask!

BAD NEWS: We have to wait several weeks more to find out what I have!

On a side note, we have an appointment with Huntsman tomorrow. Will they stand by their own pathology report (UofU), or will they agree a third opinion is called for? In the meantime, I'm hoping for a good night's sleep tonight!

Other GOOD NEWS: They gave both Ed and I orange juice and cookies after I got the PICC line out!

Blondie

My friend, advocate and lymphoma survivor, Janet Williams, volunteered to let me borrow her wigs when I need them. I think she might be more petite than I am, but I couldn't resist trying one on. I always wanted to live my life as a blond!

I had brief moments of accomplishment today, which just made more work for Ed, who ran to the post office and Walmart for me in the afternoon.

While Ed was out, Brother Tyler dropped over with two loaves of bread, which we really appreciate! Isn't it nice that they are decorated?

Marti Nuttall dropped by later and brought us soup and jello in Santa Pants. That made me laugh! We were glad to see her before they leave town tomorrow!

We finished up the evening with a visit from Bishop Shippen and Brother Hansen. We also got some good laughs out of that. Bishop Shippen has asked the Bush girls to sing in Sacrament meeting on Christmas day! They won't believe what song he recommended! (Hint: It is on Whistling in the Manger!)