Final ABVD, PET Scan, Big Move

Apologies, it's been nearly 2 months since the last post.

A few significant happenings to report:

1. Leo had his final ABVD treatment and has been chemo-free for the past 6 weeks. It's a definite improvement from a whisky and sushi perspective. He can also eat lettuce now. 

2. After two months of intensive study, Leo took the bar this past Tuesday and Wednesday. He thinks (hopes?) he passed, but we won't know until this fall. 

3. On Thursday, Leo had his first post-treatment PET scan. And this morning we got word from our doctor that it was clean. Phew, phew, phew. For the next three years, he'll have a PET scan every three months. I trust I won't burst into tears every time.

4. We're getting ready to move to Japan at the beginning of September. You know -- to shake things up, because LIFE IS TOO BORING. I probably won't post until Leo's next scan in three months, but we certainly hope we'll be in touch through other avenues. 

Still, we miss you already.

Leo's in charge of sleeping bags,
I've got snacks and the TV covered

Chemo 9, 10, 11

Since we last spoke, Leo's experienced some highs and lows. 

His fever went on a for a while - it felt like two hundred years but was actually two weeks - and we had to postpone chemo number 9 for a few days. Fortunately he was given special shots that eliminated the infection. Since then he's been receiving the same shots after every treatment. And I'm the lucky winner who administers them. You'd be proud of my professionalism: I tap the syringe with my finger and look sensible. Leo (understandably) hates when I give him the shots until we get to the part where I patch on a Spongebob band aid. Big smiles then. Of course he also knows it's for a good cause, namely helping his bone marrow grow more white blood cells and thereby boosting his immune system. It's had a huge impact on his quality of life, and he has loads more vim and vigor than before. Jazz hands!

In other news, Leo graduated law school last week. He also had his second-to-last chemo treatment on Tuesday. Zonks. Time moves fast when -- well, sometimes time just moves fast. 

Next up, Leo's last treatment.

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.

Side Effects

Well we've made it through the first four days after treatment, and I have to say: Chemo is not nice, but I forgive it.

Our weekend went like this:

Friday: Treatment day. Leo was great. A little dopey from the Benadryl, a little jittery from something in the ABVD, but otherwise not bad at all. 

Saturday: Still energetic. Some mild nausea, but this didn't stop him from chattering like a magpie (if you can picture Leo as a magpie) or going for a long walk around the neighborhood.

Sunday: Feeling not-so-good. Queasy, achy, tired.

Today: More of the same. He's been discovering new pains in different places (mouth, neck, rib). The winner so far is the one that happens when his salivary glands are activated. The first bite of every meal today involved some wounded expressions. Leo told me it wasn't my cooking, but I wish it was - I could fix that... Still Leo says that he (maybe, kind of, not really sure, but possibly) feels (a touch) better than yesterday. That's a plus! And we're not discounting any of those. 

Other pluses: 
1. The side effects could be worse and often are for other types of chemo
2. Side effects are a lot better than cancer
3. Right now he's too distracted to remember that his new wedding band is uncomfortable and annoying. Also that it represents shackles on his manhood. Yes!

Hello

Hi there! This is the first post for Leo's treatment blog.

Today we went to Memorial Sloan-Kettering (MSK) for Leo's first chemotherapy treatment. We didn't know until yesterday that we would be starting today, but it was great to get going so quickly after the wedding. Go away, cancer! 

The process took about 3 hours during which Leo was hooked up to an IV and given ABVD. We were in our own little room with a recliner for Leo and a chair for me. They did their best to keep him comfortable, propping up his feet, bringing him ginger ale, and covering him with a blanket that had been warmed up in a special machine (I want one). Nurse Alice took care of us and explained everything that was happening as she switched drips and injections. We asked a lot of questions, watched some TV, did a crossword. Leo ate a ham sandwich. 

We're now back at home and Leo's doing fine. He's sleepy from the Benadryl they gave him, but that's about it. It sounds like side effects might begin tonight or tomorrow, but we've gotten medication to manage them, and we'll get more if we need them. More on side effects when they occur.

Here are a few things that we learned recently: 

1. Trial: Leo has agreed to participate in a study for patients with advanced stage Hodgkin's Lymphoma. Our doctor recommends the trial for people like Leo with favorable HL, meaning he has few of the risk factors that are associated with the disease. Being in the study doesn't change his treatment/timeline or require more tests. 

2. Timing: Leo will receive ABVD chemotherapy every other week on Thursdays (next one on 1/19) for the next 6 months. After 2 months, there will be a PET scan to see if the cancer is responding. If it isn't, he may have to switch drugs, which would extend treatment by a month. 

3. Radiation: We're still not sure if it will be necessary. Regardless it won't happen in the next 2 months. 

4. Bone marrow biopsy: Leo had one yesterday. According to him, it wasn't as painful or scary as you might think. It did feel "weird" though. Next week we'll know if the cancer has spread to his bone marrow. Whether it has or not won't change his treatment. 

5. Sushi: Leo can't eat any while he's being treated. Doh. I guess I'll refrain out of solidarity. Oh Leo, the things I do for you...

That's all for now. More soon.