Friday, August 31, 2018

Back in the hospital

Yesterday we went up to the clinic to have them take a look at a second blood clot in my arm, also at the site of an IV. They can't give me blood thinners becaue of the bleed in my eye. They'll just watch it.

They also decided to give me a second round of rituximab to get my WBC down. It went fine at the slow speed, but had to be aborted when they increased the drip rate. After that I went through a horrific couple of hours where my fever spiked to 104! I ended up spending the night in ICU.

I feel much better today, but am dreading the second half of the treatment today.

Wednesday, August 29, 2018

Back at the lab

We had a much easier visit to the lab today.  I walked in on my own two feet and did great.  We had lunch overlooking the back gardens while we waited for my lab results. My WBC is leveling out around 240, which seems good for now.

They were a little concerned about my double vision and spots in my eyes so sent me on to an opthamologist.

I drew a picture for the opthamologist, which he said looked exactly like what he saw! It is apparently some small bleeds caused by low platelets. My platelets were down last week, but have made a rebound. My goldfish should just slowly dissappear.in the meantime they come and go and change colors. A small side effect that is nothing compared to what I've been through this week!

Cobbler with the Great British Baking Show

Ed And I started the first season of the Great British Baking Show at the time I started my cancer treatments. It was the perfect non- stressful fun show to watch together when I was awake and clear-headed!

We were able to enjoy the finals last night while eating a dish of peach cobbler, thanks to Jane!

After 10 mouth-watering episodes, it was nice finally getting our just dexserts!


Tuesday, August 28, 2018

The Sun Came Out Today

I think I may have turned a corner in my recovery this morning! I was able to sit upright for the breakfast Ed made me! I was also able to sit up and visit with my friends in the relief society presidency also sitting upright!. This was like night and day from yesterday, when I couldn't sit in a chair for a blood draw and was admitted to the Acute Care clinic again.

In the acute care clinic they encouraged more liberal use of the medicines I was sent home with, which may be making the difference. And it might be Janets's relaxing foot rubs!


Sunday, August 26, 2018

Home Again

I came home from the hospital yesterday. Thankfully, Ed found me something to wear that was stretchy enough to accommodate 27 pounds of bloat! It is so uncomfortable that it makes my entire body ache all over! The good news is my white blood count went down to 108k! The bad news is I am fatigued, light-headed, bloated, achy, dizzy and cotton-mouthed!

I'm so grateful for the many acts of kindness that have been shown us, and for Ex's patience and consideration!  I feel grateful that my prognosis is good, and can't wait to feel better!

One good thing that has come out of this ordeal is that Ed has learned to make an awesome smothie!

Saturday, August 25, 2018

Second Rituximab

Ed brought me a giant, juicy peach (thanks, Christine) to cheer me up on my fourth day of treatment yesterday! The treatments were supposed to last 4 hours, but they slowed them down to 8 hours, as I started out by developing severe pain in my upper legs. This is not a documented side effect of rituximab, but slowing it down made it go away. When I wasn't sleeping we watched some episodes of The Great British Baking Show, which helped keep my mind off my malaise.

Ed wrangled me out of bed at the end of my treatments. In order to go home without oxygen today I have to start taking deep breaths and getting a little exercise!

Ed will also have to bring me a dress to drive home. 20 pounds of bloat only let's me fit into a pair of XXX-size hospital scrubs now.

Good news: my spleen is smaller and my white blood count is down to 340k, down from a high of 580k! Only another 230k to go. I should start monthly treatments in September.

Friday, August 24, 2018

Drugged Out

It was emotional and comforting to have Ed at my side as I started my Rituximab treatments yesterday. I was still full of bloat,  and sleep deprived, as I was on medication that made me pee every 10 minutes! I wasn't ready for more! It was also hard to hear my bone marrow biopsy results were not more definitive. I continue to be atypical, but possibly still SMLZ (or not). It is not fun being different! More Rituximab today. It seemed relatively benign. I was knocked out by the benadryl that went with it, so don't remember much! I'm waiting for my weight to see if I can allow myself to feel better!

Thursday, August 23, 2018

Bloaty Day

Do you know how it feels to gain 12 pounds in 3 days? I do! Terrible! Barbara had the good sense not to comment on it yesterday. Other than that, my first two days of chemo went fine. I put a heating pad on my stomach which helped soothe my football sized spleen! I may get a small treatment of rituximab today, but am waiting for the doctor to decide.

Barbara and I enjoyed some sister time watching The Guernsey Literary and Potato Peel Pie Society on Netflix yesterday.  With all the medical interruptions it took 4 hours to watch it, but it was a great movie!

Update: make that 18 pounds in 4 days! The doctors have assured me that no one has ever exploded from bloat! I don't know if I believe them!

Tuesday, August 21, 2018

First Chemo Treatment

I had my first chemo treatment today.  The are giving me a drug called bendamustine, which should knock down my white blood count. I'll get another infusion tomorrow and then come in 5 weeks for rituximab. If I react well I'll be able to go to my nephew's wedding over Labor day, as well as Literary Sojourn the next week in Colorado. We are even cautiously optimistic about our European vacation September 11th!

Ed brought in a Roku stick and we watched the Great British Baking show on Netflix. It's a great show but makes me really hungry!  With minimal exercise the last thing I need is more food!


From Indolent to Dolent

My lymphoma went from indolent (lazy) to dolent (grievous) this month. Ed and I had enjoyed the past year and a half, thinking we had a decade before I would need treatment! However, we realized things weren't going well when I became extremely fatigued at the beginning of August.

I trip to the doctor last Friday confirmed that! My white blood cell count went from 230k to 545k in just 6 weeks! Normal is 12k! I convinced them to let me stay home long enough to celebrate Mabel's birthday on Saturday (which I totally enjoyed), but Sunday and Monday the symptoms got debilitating-- adding headaches and dizziness to extreme fatigue.

I'm in a really nice hospital suite now at Huntsman where they are trying to alleviate my symptoms while they monitor me. They did a second bone marrow biopsy (ouch) to see if my cancer has morphed into something else. This drastic turn of events is not consistent with SMZL, my last diagnosis. We'll get our new diagnosis on Thursday, as well as a treatment plan.

Ed says it is like deja vu all over again! We're hoping for an easy course of treatment that won't interfere with our European vacation on September 11th!

Monday, August 20, 2018

Mabel's Third Birthday

Mabel had her third birthday party on Saturday. It was a super fun farm-themed even, complete with tractor ride in our own  backyard!

The food was farm fresh fruit and vegetables,

as well as chili and fresh biscuits!

Mabel's cousins came to the party,

as well as several second cousins!

We played a balloon game where we tried to get the pigs back in the pen!














We went looking for hard boiled eggs spread around the yard!

Even Clementine found a few!

The highlight of the evening was the horse-back rides supplied by our neighbors, the Williams!

Clementine loved the horses as much as Mabel!

Calvin's favorite part was hitting the pinata with a stick!

Brittany had made an amazing strawberry birthday cake for the occasion!

Mabel's other favorite part was opening presents! She was happy with the new toys, books, blanket and apron.

She's been looking forward to her birthday party for a while now! We hope it lived up to her expectations!

Dry Creek River Cleanup

The Alpine Nature Center sponsored a river cleanup at the Horsetail Falls trailhead on Saturday. We cleaned up a lot of garbage in and around Dry  Creek.

Some teenagers are going to be pretty upset that their lair was dismantled!

They had set up a campsite complete with tarps and sleeping bags, as well as tons of trash and broken bottles!

The city provided a very tall dumpster, which was useful because of the couch and television we dumped in it!

We even dismantled about 6 or 7 fire circles next to the stream bed.

My job was to man the canopy, which I did very well! We didn't have a large crew show up, but it was enough to get some nice work done! We left it looking better than it was!




Friday, August 17, 2018

Blinds, Do-nuts and Kolaches

Ed continued working on Crystal's new house Wednesday, including mounting 13 blinds in the windows! I was glad when Crystal came home from work to be daddy's little helper! I was worn out!

We celebrated by picking up do-nuts and kolaches at Shipley's donuts in Parker. Kolaches were a nice surprise, little meat pies in dough! We liked them even better than the do-nuts!

We didn't get everything done at Crystal's house before we left, but we gave her a big head start! We were glad to leave her with blinds so she no longer lives in a goldfish bowl!

We drove home on Thursday, and were happy US 6 was open again after being closed from the fire in Spanish Fork Canyon. We had a little excitement coming out of Glenwood Canyon and got to watch the fire department put out a car fire. Fortunately, we were at the front of the line and didn't have to wonder what the hold-up was!




Tuesday, August 14, 2018

Crystal's Moving Crew

Ed and I drove to Denver on Sunday and have spent the last several days helping Crystal move into her new house in Aurora. She had already moved everything except the furniture that was too big to fit in her hatchback, so we went over with our borrowed (thanks Sardonis) trailer and loaded up the big furniture. We are happy to help, but heavy lifting is a younger man's game!

Ed is a more crucial part of the moving team than I am. He also helped inspect her defective washing machine, as well as assembling beds, a table and several couches.

Just when we thought we were almost done, we ended up picking up new furniture at American Furniture Warehouse (a store we really miss in Utah).

Ed and I were particularly proud of just the two of us taking the old sofa and love seat upstairs to the loft!

The new sectional fit just right in Crystal's family room! We like it very much!

Verlene came over and helped with the unboxing of the new sofa. We rewarded ourselves by going out to lunch at Platea restaurant in Southlands.

It was, happily, Taco Tuesday and we had the best tacos we have EVER eaten!

Crystal came home from work early to see if she could help. She was just in time help a bit with her new table!

We are so happy to be done with the heaviest labor! We're expecting a delivery of 6 chairs tomorrow, so Ed still has his work cut out for him. I might measure the windows for blinds. There is so much to do when you buy new construction!






Saturday, August 11, 2018

Alpine Days Parade

Everyone loves a parade! We got to the Alpine Days parade in time to get some great front row seats this morning!

Half of the enjoyement is watching Clementine and Mabel react to the spectacle!

It was also fun watching them pick up candy thrown from the floats!

One of my favorite floats was this house on wheels!


We got free Otter Pops, which was welcome on a hot day! Clementine didn't know what to do with it, but she was confident it was a good thing!

After the parade the kids had fun jumping in bouncy castles in the park!

Clementine loved the swing carnival ride, even though you can't tell by the picture!

Mabel, who will be turning three in a few weeks, was fearless on the obstacle course!

The kids had a great time, and afterwards we sent them home with Brittany and John. Ed and I went home and took a nap! It's great being grandparents!