May 17, 2012
A Day of Rest
Good morning! Michelle and I dropped the girls off at their schools. We then went to Mass for the feast of Ascension Thursday. When we got back Michelle dropped the boys off at school. I'm working from home today to keep an eye on Michelle. It's a gorgeous spring day here in Milford: sunny and expecting 70°F.
Took Michelle out for lunch at the new Cafe on the Oval. Man! Ever since they moved, they are packed at lunch time. Since most tables were full, we were "counter critters". I was happy to see Michelle have a decent lunch: bowl of soup, a couple of eggs, and a corn muffin. These past few days her throat was too sore and she was eating a bit too light.
After lunch we swung by Donut Fresh Express (DFE) to get some smoothies. The frozen chill of her strawberry banana smoothie helps chill any sensitivity in her throat. As long as she doesn't get "brain freeze"! ;-]
Michelle is about to take Snickers (aka The Doodle) in for his periodic grooming. I always find it funny that for about a week afterwards, we refer to him as "sheep cat". He's not sheared that closely, but compared to his usual "fluff bomb" character, the difference is striking.
Video: NOOK Simple Touch with GlowLight. Michelle's 3rd generation Kindle has an integrated white LED built into the cover, but this is a neat backlight approach that Barnes and Noble's Nook is introducing. Both are handy when you read E Ink displays in dim light.
“Pray as though everything depended on God. Work as though everything depended on you.” - attributed to St. Augustine. It's a quote I've known for a long time, but was still happy to hear it again.
Girls got home. Poor Claire. I knew she was somewhat tired this morning and now she'll work until closing. Michelle just dropped her off at Subway. How will she get any homework done?
The boys are home. Sister Marcelle also stopped by and generously brought us a lasagna for tonight.
Tim is getting his piano lesson. It is so much simpler now that his teacher is a neighbor who merely walks over. For once a kid activity doesn't involve drop off and pickup.
Wow! Recently got an email from CodeAcademy.com that Timothy completed "HTML Fundamentals". How many 9 years olds do that in their free time?
Michelle was feeling a bit tired so I sent her to bed early. I got the boys tucked in bed with their prayers. Abby and I watched an hour or so of Harry Potter on ABCFamily while I waited for Claire's call. Claire had one of her latest nights: wrapping up at five past ten o'clock. She'll be a zombie tomorrow morning. Yawn! Good night all!
“When he had said this, as they were looking on,
he was lifted up, and a cloud took him from their sight.” — Acts 1
Off the Trial
Michelle and I spent the day at Massachusetts General Hospital yesterday. Our hope when we went in was that the doctor could give Michelle something to address the mucositis that was occurring in her throat. He did prescribe "miracle mouthwash", essentially a compound of Maalox, Benedryl, Lidocaine. This often occurs for patients being treated for other kinds of cancer, notably throat and blood cancers. Their suffering paved the way for treatments of mucositis.
The other thing we wanted to know was the blood work. For the past few blood tests, Michelle's white blood cell counts had been a bit low and her creatine kinase (CK) enzyme levels had been much higher than expected. When we met with the oncologist in the morning he had said her white blood cells were back to normal, but a few other metrics like the CK were still pending. He asked that Michelle return after her eye exam for a bit of IV fluids.
As happens every week they also gave her a detailed eye exam. One of the two drugs is known to affect fluid levels in the eyes for a small percentage of patients. And once again, Michelle passed that exam with flying colors. When I hang around in that waiting room, I feel so sad for so many of the patients there. Many of them are having real eye issues. It made me think of the Lions Clubs around the United States and their charitable works.
When we came back for the fluids, her oncologist came to the infusion lab to give us the latest update. The CK levels arrived and were well beyond high and at unsafe levels. A second blood draw happened just to confirm the reading. He had the IV fluids bumped up from ½ liter to a 1½ liters of saline to help her kidneys flush the CK enzyme out. He said this reaction to the drugs had not been seen before but that he must pull her off the clinical trial. It may be hurting the malignancies but the side effect is too dangerous to continue for long.
Michelle will have several days off to let her body, her kidneys, and her throat recover. It is likely we will shift for now to the more conventional Xeloda regimen. We wanted to give a promising clinic trial a try first, while she was still at the peak of health, rather than as a last resort. For now her orders are "gargle, drink, pee, and rest". In other words use the Miracle Mouthwash. Drink a gallon of water a day. Let the kidneys do their job (ahem). And unlike his usual recommendation of continuing her athletic exercise routine, take a few days off. In a couple of days Michelle will go back to Nashua Oncology to draw labs again and likely get more IV fluids. We'll followup at Massachusetts General Hospital in a couple of weeks.
Yes, it was a bit sad. I'll admit there were tears from both of us. This doesn't mean that the drugs had no impact on the tumors, but the collateral damage would be worse. If we kill the tumor but ruin her kidneys and liver, what do we gain? And now cancer researchers know one more thing about the drug combination and its possible risks.
Thankfully the kids handled things at home well. We expected to be home before they got off the bus but it takes a few hours to deliver 1½ liters of saline. Michelle had a beef barbecue stewing in the crock pot for them. They got along well with no arguments. Thank you God. When we aren't there, they are so prone to getting ticked at the littlest offense from a sibling. Michelle's friend Tammy stopped by about an hour before we got home to check in on them and keep them company. We arrived around seven o'clock after a brief stop at Walgreens for the prescription mouthwash.
I apologized to Timothy about not being able to do much tinkering with him. We also learned that he had an awesome score on the math section of his standardized NWEA test. Sounds like someone else I know back at his age… As Tammy and her kids were heading out, I was following in the tradition of my dad and falling asleep on the couch. Between waking up at 4:30am for the Boston trip and fighting the two long commutes, I was pretty tired. I setup the humidifier in our room to help Michelle's throat. Since the boys were dawdling, she put them to bed.
May 15, 2012
Still Sore
Good morning! It's a Tuesday, what can you say? I dropped the girls off at their schools. Michelle is going to drop the boys off and then go take the Boot Camp class at Golds Gym. I offered up a set of Sorrowful Mysteries for her during my commute. Hoping Michelle's nurse calls her soon.
Even though Claire had her last track meet on Saturday, she still intends to do some running with the team after school at an unexpected track meet. And Tim is excited because his netbook is supposed to arrive today. For now he intends to have it dual boot between Windows 7 and Kubuntu. We figure he's got the RAM and GPU to do so, so go for it.
Called Michelle just before I stepped out for lunch. She had a good class at Golds. She hasn't heard from her nurse so I asked her to try again. It was overcast but windy and ~70°F outside when I walked over to the cafeteria. According to Amazon, Tim's netbook has arrived.
“Of course, there are no plans for US export…” Darn! VW, why must you tease us like this?! (car story link)
Congrats to Milford High School on its U.S. News and World Reports ranking.
Tried to leave a bit early because I have a conference call at 7pm. 'Twas drizzly the whole way. I listened to a podcast along the way home. Tim is of course excited about the computer that arrived today. Michelle's nurse did call with some tips, but of course more will be examined tomorrow.
A bit anxious because it's going on seven and Claire isn't back from her track meet. While I ate dinner, we got Tim's computer unpacked, through the basic setup, and downloaded Microsoft Security Essentials. Tim will do the advanced stuff over the next day or two. My conference call starts in 10 minutes...
Via iowahawkblog: “My 3-word college commencement speech: ‘Demand a refund.’ ”
Via iowahawkblog: “The federal government wants to investigate JPMorgan for losing $2B. The federal government loses $2B before lunch every single day.”
Picked up Claire a little after 8 o'clock. Luckily she was able to work on homework at the meet. Got the boys all tucked in bed with their prayers. Setup a humidifier in our room again. Michelle's throat is still sore but manageable for now. Tomorrow's an early day. Good night all!
“I tell you the truth, it is better for you that I go.
For if I do not go, the Advocate will not come to you.
But if I go, I will send him to you.” — John 16
Summary of Recent Posts
May 14, 2012
Mucositis »
Back to work and school. Michelle taught her Step class. "Nunc Coepi". Claire and I work out at Golds. Michelle's mouth and throat are sore. (399 words)
May 13, 2012
Mother's Day »
A pretty lazy Mother's Day. Claire worked. Breakfast at DFE. Afternoon at Keyes Field. (367 words)
May 12, 2012
Evening with Sr. Marcelle »
Busy day. I took Tim with me to the Y. Claire has her last track meet. Daniel and Abby have dance class. Look for a replacement laptop for Timothy. 4pm Mass. Family dinner with Sr. Marcell. Girls go shopping with her. (450 words)
May 11, 2012
Dad Heads Home »
Dad heads back to Michigan. Claire has a field trip. Michelle has a dentist appointment and tries a class at the Nashua Golds. Abby is on Facebook. Falling gas prices?? Lunch with driver guys. Winner of the 4KB coding competition. Catchup with my grandma. Tim's laptop dying. (563 words)
Back Home »
Michelle done with her second PK. Dad watched the kids. Dad heading back home. (683 words)