Monday, July 29, 2013

Why is that silly medicine doing that to you Papa?

Good question Stella. She posed this one at dinner tonight. It was inspired by the "silly" chemo really working a number on Jeff the past couple days. 

Today at the regularly scheduled clinic visit we learned that his neutrophil count has dipped as low as ever. Remarkably, however, he still has not hit official neutropenia which means he will likely face another dose escalation for Round 5 - beginning August 8. 

Jeff is amazingly strong, but it is both inspiring and gut-wrenching to see him grin and bear it through feeling so utterly crappy. I've never seen him this tired. He is totally exhausted. And an unfortunate new side effect from this latest escalation is a swollen and irritated mouth which is making it difficult for him to chew, swallow, or even talk. 

My mom and I made - if I do say so myself - some pretty delectable pasta tonight. Stella proclaimed it delicious and Jeff loved it, too. But he couldn't choke down more than a couple bites. Terrible. I felt really guilty for eating my portion and one for Lydia, even though Jeff wanted someone to enjoy it.  Thus, after I post this I'm going to write up a shopping list so I can cook up some good puddings and smoothies and other cold things that do not require chewing or much movement of the tongue. Here's hoping Jeff is back to his voracious appetite soon and of course, more than anything, for an excellent upcoming PET scan.


PS - The blogger who adapted the recipe we made (see link above), committed in my mind, some egregious missteps which probably compromised the deliciousness of the dish. And, she still thought it was good, so that's saying something.  Still, I recommend that if you try this dish, you use fresh soft goat cheese. Also use fresh oregano, two ears of corn instead of one, and perfect cherry tomatoes from a certain friend's garden in San Leandro. If such tomatoes are not on hand, two pints of high quality cherry tomatoes will do the trick. You won't be sorry you splurged on these ingredients. Promise.  Also, I think a full pound of pasta would be a bit much. I used about 3/4 of a lb of fettuccine. 

Saturday, July 27, 2013

Seventh Inning

Team Miner: 

Back in the day, I was a big baseball fan. Like every other red-blooded Minnesotan kid I worshipped Kirby Puckett. I loved the Twins. All the Twins. Especially Greg Gagne - since shortstop was my favorite position to play in coach pitch, the dreaded pitching machine, and later softball - and Tom Brunansky - who happens to share my birthday. I was fortunate to grow up at a great time to love the Twins. I still remember singing the Homer Hanky song at school every morning during the '87 (or was it the '91?) World Series as led by whichever Fulton Elementary administrator was leading the morning announcements over the loudspeaker. I can still taste the synthetic but utterly delicious flavor of a chocolate malt cup on a flat wooden "spoon" at the Metrodome. I had a relatively sweet baseball card collection, which I intend to find and pore over next time I actually get to travel and be back in Minnesota. I even knew how to correctly (?) use baseball phrases like "seventh inning slump."  There's a stretch, I know.  I know.  We all know about the stretch. I'll get to that.  For now, let me believe there's also a slump.

Well, years and years have passed and I no longer have much time to watch or follow baseball. I know the Giants' schedule inside and out, but only because I despise how it messes with my commute and traffic in our neighborhood.  All of this reminiscing about the Twins was just a ploy to lead up to writing about how I'm in a bit of a... you predicted it... slump.

At this point, this is just dragging - chemo, I mean.  I cannot believe it, and I hate to say it since my body is not the one under assault from drugs upon drugs upon drugs, but it is beginning to feel almost normal. Our little family lives our life in increments of what is starting to feel like a never-ending three week treatment schedule. Lydia has essentially never known anything else - not that she knows much more than how to nurse, giggle and smile, and grab small things to nom upon with some degree of success. Stella's emotions and behavior crest and fall with this rhythm of when Papa is in and out of the hospital. Jeff is beginning to be able to anticipate when he will be feeling specific side effects. That's kind of helpful, but it's also depressing to be that familiar with how chemo makes him feel.  My mood also rises and falls from day to day, but more often than not, I know I'm just going to be in it for another day of the same. Either Jeff's in the hospital or he's not.  I'm just plugging along, keeping it (sort of) together.  It's getting old. 

[Of course this isn't entirely accurate. Fun things happen and some days are delightful. Stella went swimming with Grandma Robin this past week. I got to dance with Stella at her final dance class of the summer session this morning. My mom is here and we had a lovely Ferry Building excursion today.  And we are so lucky and thankful to have people continuing to feed and nurture us - literally and figuratively.]

My point is just that I feel like I'm in a downswing. We are inching ever closer to Jeff's PET scan but the days leading up to it are dragging. After the scan we will know more about what's to come. That's good, of course, but I am also anxious about it. No surprise there.

Anyway, I'm hoping the scan will be akin to a seventh inning stretch when we take a deep breath, sing it out, drink a cold one from Wally the Beer Man, and then find out very good news and rally for a huge (and quick) victory.

On that note, instead of wallowing, I will focus on channeling this glee.  Especially Kent Hrbek's elation and double fist pump of celebration.

Go Twins!  Go Team!


Tuesday, July 23, 2013

Le (contented) Sigh

Team Miner- 

Jeff is home.  Hooray!  

Earlier today he withstood his fourth and final spinal infusion. Booyah!  

Tomorrow he gets the amazing/dreaded/painful Neulasta shot and has another check-up with the oncologist.  Grandma Robin was able to be with him all day today while Lydia and I ran errands about town and kept any errant germs emanating from her (less and less) goopy eye far from 11 Long.  

Right now Lydia is snoozing and Jeff is putting Stella to bed.  She is so happy to have Papa home.  He just witnessed her doing the "I'm A Little Teapot" dance.  I have only overheard her singing, but he says the dance itself is incredible.  We'll attempt to get a video soon so all may enjoy.

I'm going to stop typing now and bask in the wonder of having Jeff home.  

Good evening to all, 


Sunday, July 21, 2013

Awkward Times

Team Miner,

This post is brought to you by the letter M.  Specifically, Mariko, who lent me this computer upon which I am typing (my laptop is currently out of commission) and Megan, with whom I got to hang out and chat with last night.  Both lovely ladies (and Brent) fed me and the girls (and Grandma Robin) yesterday as well, so thanks guys!  I owe you both.  And thanks to everyone else who has been helping us through the latest round of chemo and visiting Jeff.

Speaking of Jeff, he is doing pretty well.  Once again, the oncologists have escalated his doses of chemo.  He is seriously one tough cookie.  This amounts to three escalations, one for each round of chemo, past the initial one, thus far.  In terms of Jeff's general health, physical strength, and cancer-fighting prowess, this is a good thing.  I will confess, however, that every time the dosage rises I worry about how he will feel when he gets home. 

And this time around I am especially anxious for Jeff to come home and I'm worried about when he comes home. I haven't seen him since Friday because Lydia came down with her first little cold yesterday.  She's doing pretty well, but looks rather sick.  I believe this is because she used to have a clogged tear duct.  It magically resolved on its own right around the time Jeff entered the hospital upon diagnosis.  But her eye tends to rear its old nasty goopiness anytime she is even slightly congested, so the girl looks a little rough and weepy right now.  Due to her sniffle and the conspicuous eye boogers, she needs to stay away from the hospital.  I need to stay with her.  So, we are separated from Jeff again.  Thankfully Grandma Robin is here so she can hang with Jeff.  Please send Lydia and the rest of us virus-killing, "get well" vibes so that we are healthy and don't make Jeff sick when he returns home immuno-compromised.

With that update taken care of, I'll address the reason for the title of this post and why I have felt like Debbie Downer this weekend and on a relatively regular basis.

By now, months into this lymphoma battle, most everyone I know is in the loop about what's going on with our family.  Almost every person I see on a regular basis either talks to me frequently, or reads the blog.  Every so often though, I'll run into someone I haven't seen in several months.  Usually the conversation starts with congratulations on Lydia, which is lovely, of course.  And then I'm asked how things are going.  I guess I could just deflect and try to make small talk, but that seems even more awkward, so I mention that Jeff has lymphoma.  Cue the sad trumpet noise.  Womp womp.  

The worst incidence of this phenomenon occurred at our neighborhood coffee shop a few weeks ago.  I saw a person I hadn't seen in some time and noticed that his beloved dog - a dog I actually quite admire and enjoy (which is saying something for me because I am NOT a pet person) - was not with him.  I asked what was up and learned that the dog has cancer.  Ugh.  So terrible.

Then, of course, when I was asked about how we are doing, I mentioned that Jeff has cancer.  Sucks.  I didn't mean to sound at all like - "Well, you think your life is tough?  My HUSBAND has cancer." - but that's kind of how it came out, regardless of my best intentions.  It's just... awkward.  That's all.

So, I will leave the awkwardness there and go clean the Nose Frida, which given Lydia's snottiness, is also saving the day around these parts as of late.