Chemo 7, 8 and Counting

It's been a pretty uneventful month with no major changes to report. Leo is a little balder, more tired, and pretty ready to stop getting pumped full of chemo. 

Right now he's taking antibiotics, prescribed this morning, for a wee fever. Well it was wee for a few days, but then became less so last night, hence the antibiotics. We were relieved to talk to the nurse and get meds so we could stop playing the how-many-times-can-Raku-take-Leo's-temperature game. I must have gotten up to 30 measures/day, hoping that his fever would be crushed under the weight of my awesome neurosis. Of course it wasn't, but we have high hopes that actual science will do the trick. 

Last Monday Leo also had a pulmonary function test because he's been feeling winded. That test was intense: He sat in a small glass box, frantically blowing into a tube as the technician hollered commands at him. Leo was wonderfully stoic, but I almost passed out deep breathing in encouragement. He later asked me why I was making weird animal noises. The test results seemed fine, probably thanks to my Lamaze coaching. 

This Thursday is chemo treatment 9 of 12. Three-quarters through, baby.

Chemo 6 and Slideshow

This past Thursday marked the halfway point for Leo's ABVD. It was his 6th treatment of 12, and reaching it has got us pretty pumped. This time Leo has had some annoying pain in his injection arm, but we're working through it with hot compresses and OTC painkillers. 

From here on out, I'll probably update this blog less often, maybe once a month, unless there's something to report, but please don't hesitate to reach out if you have any questions about Leo in between postings. As always we love to hear from you - you are our collective, awesome rock. 

I'll end with a new slideshow of photos from our wedding: vimeo.com/christinehan/rakuleo

This photographic magic was orchestrated by the amazing, so-very-very-talented Christine Han. Visit her site!

Great News

Leo's PET/CT came back negative! This means that the ABVD chemo is working and that any cancerous activity is now at the microscopic level. The tumor is also shrinking. 

This means that Leo will stay with his same regimen and, barring any complications, that he won't have another PET/CT until a month after ending treatment. It also sounds like radiation treatment won't happen at all - that it hasn't been shown to be effective for late-stage Hodgkin's - so Leo's treatment should be over around the end of June.

We're so happy about the results that we may celebrate by watching TWO episodes of Star Trek TNG tonight. Whoa. Calm down, right? 

In other happy news, two lucky babies were born to good friends, both on Leap Day. A huge welcome to Sasha Sarana Harada and Zoe Summerville Marcovitz - and cigars all around in honor of their parents, Kana, Max, Meredith, and Ben!

Chemo 4 and Doing Well

Fourth infusion yesterday and Leo's fine. Only mild nausea this time, probably due to the Ativan they gave him. In addition to preventing nausea, the magic pink pill loosened him up enough to assure Nurse Alice that he wouldn't "operate any thrashers today." He then promptly fell asleep for three hours. He also slept the entire train ride home and took another three hour nap when we got home. BORING. But I spent some productive time with Link, so it was win-win.

Some recent happy highlights in our life: 

1. Sarah & Travis got married - congratulations!!

2. Maggi made a delicious ham happen

3. Veronica knitted Leo a beautiful hat 

A Fine Hat

Next Thursday will be Leo's first PET/CT since starting treatment. The doctor will use it to see if the ABVD is working and switch him to another chemo regimen if it's not. Another update when we know for sure, but it may not be until the following week (3/1). Of course I'll post when we hear back. Until then!

Chemo 3 and Pork Chop

This past Thursday was Leo's third round of chemo (aka cycle 2, part 1). The process is now pretty routine: check in, blood test, see doctor, get attached to IV, lots of waiting in between. After 4 or 5 hours we leave. In the meantime we waste a lot of time on the internet. Sometimes Leo takes a nap. Usually I fall asleep trying to do the crossword. Crosswords are hard work. 

The nausea has been worse this time. It seems like Leo's body doesn't want him to keep taking toxic drugs (silly body, why ever not?), so it decided to become nauseated before he even began the round - in fact while he was being administered his anti-nausea meds. I guess that's supposed to be ironic. The result is that he's been feeling quite queasy for a few days. Fortunately, this hasn't prevented him from eating heaps of food. For his birthday last week we even went out to a (real) restaurant. Below is a photo of the pork chop I ate; Leo ate his fried chicken too fast to photograph.

My Pork Chop

Aside from the nausea, Leo's white blood cell count is low, so he's at high risk for infection. We're washing our hands a lot and avoiding friends with sniffles. If you're one of them, stay away or face my wrath. Just kidding. But not really.

What else? Leo still has hair. It's very short though, a quarter of an inch, because we've been buzzing it every week. I'd post a photo, but he would hate that, so you'll have to see it in person or imagine it fondly. If it helps, I've noticed an outstanding resemblance between the shape of Leo's skull and that of Star Trek's Captain Jean-Luc Picard. Obviously no coincidence for, like, a hundred reasons.

Chemo 2

This past Thursday was Leo's second chemo treatment. It went pretty much like last time - injections, drips, heated blanket, sleepytown - but two great things were different:

1. Our doctor told us that the cancer isn't in Leo's bone marrow. YES. Aside from that being good overall, it also means no more bone marrow biopsies.

2. This time around, Leo's side effects have been much milder. Still some nausea and tiredness, but no aches or crotchety salivary glands. He's been getting lots of food and sleep and generally seems chipper. Fingers crossed things stay this way.

Because there's a better than good chance that Leo's hair will fall out, we decided to give him a preemptive buzz on the recommendation of friends. That was on Friday. He now looks pretty tough. Acts it too. Maybe that's why he doesn't like when I try to pat his new 'do. Or maybe it's just that I'm crooning "You're my fuzzy-buzzy funny-bunny" at the same time.

On Normality and Food

Leo has been feeling a lot better these last couple of days. Many of the side effects have been reduced to a murmur, leaving him "almost normal." Normal enough to plague me with bad jokes and classic Leo-like behaviors (imagine these for yourself, but keywords are: watches, procrastination, and Leo you'd better WRITE YOUR PAPERS). Normal enough for us to bicker like an old married couple. Or maybe the Odd Couple, but, weirdly, we take turns being Oscar and Felix at exactly the same time and argue about that. 

Over the past few weeks Leo and I have been lucky enough to receive some incredibly generous offers and gifts of home-cooked food, often involving magical door-to-door service (see photo). We love the food! Thank you so much.

Something that we've recently learned is that there are several (normally healthy) foods that Leo can't eat now that he's started chemo. So, though this sounds awfully presumptuous, I thought I should give a heads up to avoid anyone going to the trouble of preparing food that Leo can't actually eat. Below are things that he should avoid.

Too Acidic (will hurt the mouth):

Tomatoes, raw or cooked

Citrus fruits or juices

Vinegar or vinegary foods

Coffee

Alcohol

Other Mouth Irritants: 

Spicy foods

Hard, dry, or coarse foods

Very hot/cold foods

Very sugary foods

Bacteria Carriers (due to a lowered immune system):

Raw milk cheeses

Raw fruits and vegetables that haven't been washed/peeled

Raw fish or meat

When the doctor told us about all the foods to avoid, Leo's only question was, "So I shouldn't eat steak tartare?" I really don't think that was a joke.