fat wednesday

Back to a normal diet, yay! Also, spoons is on twitter if you are into that sort of thing. :)

coming up this week

With his ever-increasing mobility, Spoons got back to work at his office on Thursday and Friday afternoons last week. The subway ride was a fair bit of work - balancing, sitting in not-so-comfortable seats, people jostling everywhere - but he made it. He said it was a good workout! Since a full day of sitting is still a lot, he'll probably go in for the afternoons again next week and work from home in the mornings. The predicted time off from work for this surgery is 4-6 weeks, so he's definitely doing well, with really only 1.5 weeks fully off, this week and next week working mostly from home and some shorter hours, and then probably back full time in the office around the 4 week mark.

We went also went to Manhattan yesterday to see the NY Philharmonic (see the program if you want to know more). I won the tickets last summer at a concert in Prospect Park in Brooklyn by signing up for the Philharmonic's mailings, and I had months and months of concerts to choose from. As we were sitting down last night in our very nice Philharmonic-provided seats, I noticed that a work colleague of mine and his wife had the seats next to ours! (He was even wearing an ATLAS neck tie!) They had also won the seats by filling out something for the Philharmonic - a pre-concert talk survey in their case. So we both had won some kind of drawing, we both picked the same concert, and then we got seated next to each other. So funny. The music was good and it's always fun to get out and do real New York things.

The week ahead for me is an exciting one - I'm interviewing for two jobs. One is a job at Lawrence Berkeley Lab, in Berkeley, California, to keep doing research like I am now and to help organize an important physics publication, and the other is a faculty position to be a Physics professor at NYU, where I would keep doing research but also other professor-y things like teaching. If I don't get these jobs this year, I have one more year to work at Columbia before my contract there is over and I have to find something else. This Monday and Tuesday I'll interview in California (I'm on my way there now!) and Thursday and Friday I'll interview at NYU. I am excited about both positions and San Francisco and New York are both places where we would like to live and where Spoons could keep working at Google. So, wish me luck! And don't worry - our NYC crew is taking good care of Spoons (as always :) ).

quote of the day

Spoons [wistfully]: "I think I miss egg yolks most of all."

One more week til egg yolks!

the reboot

Since the surgery, it's like Spoons has had a reboot and has had many firsts: first glass of water, first shower, first ... of various digestive things. So, we've been joking every time we introduce something new: "first mushrooms!" "first pasta!" and sometime next week when the low fat regimen is over, it'll be "first butter!" and so on.

Today there were two good firsts: first pint of beer (it was the first time he was really feeling up for it) and first time wearing real pants! He's been wearing pants of course, but always sweat pants or pajama pants until today.

weekend: cocktails and quarantine

This weekend at home was good - people came over to visit which is always nice and there was a lot of sunshine so we made some "feels like it's almost summer" cocktails as well as a jasmine tea/honey/lemon/grapefruit non-alcoholic version that was very tasty.

Spoons continues to feel better - more appetite, more awake, wider range of motion - and he can even put on his own shoes now! He keeps walking a lot, which you can see on Run Keeper (thought it's more of a "Walk Keeper" for now).

Unfortunately, as Spoons's health has improved, mine has declined. Even though everyone has been telling me to take good care of myself (and I have tried!!) I got sick yesterday with a fever and sore throat and stuffy nose and everything. Because Spoons really cannot get sick right now, I'm in quarantine in my own house! Good thing we have a comfortable guest bed. Last night I slept upstairs, where I had crazy fever dreams about octopuses. Tonight I'm hoping for a more relaxing sleep, with maybe a little less crazy dreams. :)

As the tables have turned, Spoons was cooking for me today, and we watched a movie tonight on separate couches, like roommates, before he headed downstairs to bed. I haven't had a fever since early this morning, so as long as I continue to improve hopefully I can get out of quarantine soon.

Movie reviews:

Animal Kingdom: Australian crime family, bloody, pretty slow moving but with some good parts. Guy Pearce does his best Gary-Oldman-Commissioner-Gordon impression.

The Prestige: Speaking of Batman, in this movie directed by Christopher Nolan (Batman Begins) Batman (Bale) and Wolverine (Jackman) are rival magicians in nineteenth century London. Also David Bowie is Nikola Tesla. That pretty much sums it up.

what to eat

Here's what we've cooked at home so far. Since it can be difficult to think of things to cook, I thought I'd keep track and post the ideas and recipes at the end of the two weeks in a place where other people who have to be on this diet for a while can find them. Until then, here's a list. FF= Fat Free

Breakfast
FF yogurt with fruit
Toast with jam

Lunch/Dinner
Potato soup: potatoes, carrots, celery, onion, garlic, broth, stir in egg whites at the end
Borscht: beet soup with leeks, dill, lemon, black-eyed peas and lots of other stuff, FF sour cream
Gnocchi with tomato/basil sauce, spinach salad with FF dressing and FF feta cheese
Red lentil soup with homemade croutons and salad with FF dressing
Egg white/egg beater omelet with mushrooms, zucchini, onion, etc

Snacks/Desserts
Sorbet
Fruit
Fruit smoothie/juice
Smart Start cereal with skim milk and fruit
FF Cottage cheese and fruit
Chocolate milk/hot chocolate with Santa Cruz chocolate syrup
Vanilla Carnation instant breakfast shake with skim milk (chocolate has fat...)

On the list to make
Black beans and rice, serve with egg whites/beaters and salsa
Black bean soup
Squash soup
Stir fried vegetables with thai curry paste + rice
Indian food: yellow lentils, cauliflower/potato/tomato dish or spinach or beet side dish
Polenta with stuff
Quinoa with stuff
Fat free cookies?

Other ideas? Recipes? Let us know!

learning to diet

Today was the first full day at home, and it was certainly nice to have Spoons back. He can do most things on his own -- just the socks and shoes are a problem, and he's not allowed to left anything too heavy. He was walking a lot in the hospital for exercise, and kept it up today, going on two walks around the neighborhood at about ~1 mile each. I went with him on one of them, and it was exciting to see signs of spring: buds on trees, crocuses blooming, people outside.

I also went shopping to try to find a bunch of foods that we would normally steer clear of: fat free yogurt, fat free sour cream, fat free salad dressing (hint: it's mostly vinegar without the oil). Often, the "full fat" versions of these foods are just milk, while non-fat versions have a lot of other stuff to compensate, like lots of sugar. I did manage to find some good ones, though, I think, and we had homemade borscht for dinner with a bit of fat free sour cream as a garnish, and it was tasty. Because grocery shopping is usually pretty easy for me, it was a new feeling to walk around and think "nope, shouldn't buy that" and "off limits!" -- I felt lucky that usually, most of the things I want to buy are the things that I can buy.

In general, I feel very lucky this week - lucky that we have access to good health care and good insurance, lucky that we both have jobs where people care about us and are flexible with our schedules, lucky that we have people to help us both close by and farther away. I think bad stuff happens to everybody eventually, and I feel glad that we were in a place and time that we could deal with it and go forward. Spoons' brother Ben said it seemed to him like we thought the surgery and chemo were "wildly inconvenient" but not much worse, and I'd agree. If "wildly inconvenient" is the worst it's been, then I think we are doing pretty well.

home!

From Spoons:

Today I came home from the hospital. Yay! I am looking forward to many things, like the fact that no one is going to try to draw my blood at 4:40 tomorrow morning, and also seeing more of our Brooklyn friends.

I got the pathology report from my surgery, and it's all good news. The offending lymph node has been removed. They also removed a bunch of other lymph nodes from that area, and all these tested negative. My surgeon was very pleased with the report, and we are too. In the future, I will still have scans occasionally, but the chances that I'll need any further treatment are very low.

From here, mostly I am working on recovering from the surgery itself. Some things, like no heavy lifting, are not too surprising. My surgeon is also really cautious about re-introducing fats into my diet (because of a connection between fat digestion and lymph production), so I'll be eating less than 5 grams of fat per day for the next two weeks. Yay.

on schedule so far

Everything looks good for Spoons to get home today. They've removed almost all the various tubes, with just one left on his arm in case he needs an IV again. He's gotten to eat real food for breakfast (toast! banana! cottage cheese!) and for lunch (soup with noodles! fruit! more cottage cheese!) and he feels well after eating. Someone should be coming by soon to remove his staples and replace them with steri strips that will fall off on their own in a week or so. Yesterday a physical therapist came by to make sure that Spoons could walk well enough and get up the stairs into our place without any trouble.

The Surgeon has already come by to give his OK, and with that, we should be out of here soon!

le menu

From water only to clear liquids! There's even a menu of liquids to choose from. :)

reformatting...

Aside from the new room today, the biggest excitement was Spoons' sister Rachel's visit and drinking water (yay!) for Spoons. He also walked much more than a mile, and he isn't really using his pain medication -- all good indicators that he'll be home again on Wednesday or Thursday.

In other news, while Spoons' insides are reformatting themselves (bad analogy!), my laptop seems to have crashed hard today, and I am trying to reformat it now... wish me luck! And remember, back up your stuff. Last time I had no backup, but this time I am much better off.

new view

One thing we've been trying to figure out is why the default rooms covered by insurance are shared instead of private rooms -- medical professionals, feel free to let us know if you know! We got moved to a new room last night, I think both for Spoons' benefit and for the privacy of his roommate. His most recent (now ex-)roommate was a much older man facing some difficult medical decisions and today, Monday, it seemed he'd be having a lot of important discussions that I'm sure would have been awkward to overhear. So, maybe they moved us for his privacy. He was also constantly arguing with nurses about everything (whether he could shower alone, what he could eat, whether he needed more medication) and that wasn't fun for us, so maybe they offered to move Spoons for Spoons' benefit.

So, we moved down the hall to a room with nice big windows that you can see above and a great view that you can see below.

sunday routines

I have lots of good news from today! Things continue to go back towards normal, as Spoons is breathing almost as well as before (hitting 4000 again on the incentive spirometer), walking almost as well as before (much more than a mile today), and today he got to have delicious, delicious pieces of ice -- the first thing he could take by mouth since the surgery.

The usual plan is this: ice chips Sunday, sips of water on Monday, clear liquids on Tuesday, and something to eat on Wednesday or Thursday. If everything keeps progressing well, he'll becoming home on Wed or Thurs.

Yesterday I mentioned that showering can really make a person feel more human, and Spoons said another thing that really felt nice this morning was sitting up, reading the Sunday newspaper, and holding a styrofoam coffee cup in hand, even if that coffee cup was full of pieces of ice. The simple act of holding a cup felt good, and he's already looking forward to getting back into other routines, like having some coffee and breakfast with that styrofoam cup and newspaper.

getting back to normal

It is interesting to me how significant the simple things seem after such a short time. Wednesday morning, Spoons was - of course - able to shower himself. Today was the first shower he took after the surgery, and even though it was only two days in between, being able to shower seems like a huge amount of progress. It's good exercise, standing and stretching, and it just makes a person feel like a human being.

So, things are slowly getting back to normal. Today there was showering, wearing some actual clothes yesterday and today, like the stylish blue robe pictured a few posts ago, and playing cards. We played some Euchre, and Spoons read a book for a while and watched some TV on DVDs. He also walked at least 14 laps - more than the goal of 10 - and that's a whole mile. On the incentive spirometer, I think he topped 3000, up from 500 a few days ago.

Hopefully we'll move on from ice to liquids to solid food soon enough that we can get Spoons home by Tuesday or Wednesday next week.

Good night, all!

a relaxing saturday

Things are a bit more low-key here at the hospital on Saturday. Instead of Soul Patch and Goatee coming by around 6 am, the doctor taking care of Spoons over the weekend is a James-Earl-Jones-looking dude named Dr. Moses, and he came by around 8 am. Spoons has already walked 5 of his ten laps for the day, so he looks on target for 10 or more!

We are also both sleeping better. He said that he slept for many hours in a row much more deeply than he has since the surgery, and that he feels much more awake today as a result. I slept really well last night, too, at home, and though I woke up with a start at 5:30, I managed to get back to sleep for a while, and I had a nice breakfast at home with Ben and Janine before we came to the hospital.

Since they really moved around his whole digestive system during the surgery, he hasn't had anything to eat or drink yet. All his nutrition has been through the IV so far. They've been listening to his gut with a stethoscope and today gave him a little something to get the digestive party started. If that goes well, then tomorrow he can start having delicious ICE CHIPS and then later more liquids before moving on to solid food.

post by the numbers

Laps of the hospital walked today: 9. Spoons did a few sets of laps: 2 in morning, then 3, then 2, and 2 again before going to bed. The physical therapist said the goal should be 10 for tomorrow, 12 for Sunday and 14 on Monday, which is a whole mile.

Number of doctors/specialists/nurses/etc seen so far today: 4 doctors, 3 nurses, 1 physical therapist, 1 social worker, many others checking vital signs, and helping out

Drugs taken that start with Z: 2. Zofran and Zantac for nausea

Friends and family who have visited: 9, not including me. Thanks to all who have come and all who have offered!

I'm home and about to go to sleep, just wanted to check in with a few last thoughts from today. Spoons is able to stand and walk more more without help, and managed to get up and about a lot today. The only thing keeping him down a bit in the morning was nausea, so he has been taking Zofran and Zantac for that, and in the afternoon he was feeling better.

He hasn't had a lot of pain -- the feeling was upgraded by him from "being punched in the stomach all the time" to "sore like I had done a million stomach crunches." I think that's an improvement!

Spoons' brother Ben arrived with Janine tonight, and they'll be here for the weekend. It's good news for me, since I'll enjoy having them around and I'll feel more free not to stay at the hospital all day if they are there. What will I do with myself? Probably come home and sleep more in the afternoon if I feel like it. I'm generally good, but just really tired. Sleeping sounds great. :)

spoons shows some love for his fans

Just walked two laps around the floor, farthest walk so far.

6 am wake up call

Report for this morning! The doctors, Soul Patch and a younger guy (Intern, maybe?) who we can call Goatee, came by around 6 a.m. and they removed the bandages from the surprisingly long incision which is all stapled together. It's from just below the sternum to below the belly button, and if you really want to see more, you can google image search for RPLND (warning! very graphic!!) and you can get an idea what it's like. The doctors were happy with the way it is healing, and there won't have to be bandages on it any more.

Enough about medical details, though. I know what you're all really wondering. What is Spoons wearing while he's convalescing? He's started to get out and walk the blue carpet -- which of the latest styles will he be sporting? So far, at the recommendation of the staff, he's been wearing a hospital gown on the front and another gown draped over the back like a flowing cape. The way the snaps open on sides and the overlap of the two gowns and the asymmetric way they hang creates quite a modern look.

The day of the surgery I took a break from the hospital after Spoons was in recovery and went out to buy the following hospital essentials:


You can see a cozy robe and some pajama pants that say "Soft!" The text is too small, but what they really say is "Exceptionally Soft!" There are also two pair of slippers, since they were on sale and I wasn't sure if he would prefer regular slipper or stylish plaid backless ones. So far, he hasn't moved up to "robe-wearing" level, but should get there soon.

end of day 2

I'm at home in Brooklyn, ready for some nice quiet sleep before getting back to the hospital early tomorrow. I had a nice lunch, and coffee, and dinner with friends and family visiting today and yesterday, so don't worry - I'm doing well, too. I realized when I got home that part of the reason I was hesitant to come home was that the house would seem too empty on my own. Of course, I also wanted to stay at the hospital to stay close to Spoons, but I also didn't really want to see the house so empty. Now that I'm here, it's OK, but it definitely makes it seem like the surgery is something happening to him alone, whereas when I'm there, it can feel more like something that we're going through together, and the latter feels better somehow.

During the rest of the day, there were more visits from lots of members of the staff (so many people!) who each had their own tips and questions. In addition to the respiratory specialist below (who asked my permission to call Spoons "sweetheart," which, of course, I granted) there was a spunky redheaded physical therapist who helped Spoons figure out how to walk better and The Surgeon (capital letters, since he's an important guy!) who performed the surgery who came by to check in. When the physical therapist measured the oxygen levels described in the last post, she was getting numbers in the high 90's (96%, 99%) so she was happy, and we were too.

Another doctor we've seen a lot of is the fellow (here, used as a technical term, not just a word like "chap" or "bloke") who is working with Spoons' surgeon. Let's call him "Soul Patch." Soul Patch is a very soft-spoken young doctor who checks up on Spoons every few hours during the day and reports back to The Surgeon. Soul Patch came in this afternoon and said that everything in Spoons' blood looks good. I asked what kind of stuff they were looking at, and he mentioned things like hemoglobin, white blood cells, and especially salts, since the salt levels may have been affected by chemo, even though it was about 9 months ago. He said that they'd monitor the salt levels and give Spoons magnesium or potassium or others if needed by IV -- kind of like intravenous Gatorade. In a few days he'll be able to eat again, but not yet.

Question time! You can send questions to us by email or in the comments below. Spoons' aunt Anne asks "Any meds besides morphine? When will they switch to something milder?" So far, he has morphine in a drip that goes at a constant level with a button that he can press for an additional dose. I don't know when they will go to something else, but I do know that he can't bring the morphine home! I'll find out. He also had a lot of nausea today when trying to walk around, so they gave him Zofran for that. The nausea could be coming from the anesthesia from yesterday still, so we'll see if it's still there tomorrow.

Good night, all. Thanks for your emails and phone calls. Even if we haven't responded just yet, they have meant a lot.

walk #2

Just got back from walk #2 - down the hall a bit and back - after succesful walk #1 this morning. A respiratory specialist came by and said that Spoons need to be breathing deeper! She measured the oxygen level in his blood with a cool finger tip oxygen monitor and said is was a little low: 94% of something when it should be 95% or more. By the time he walked back to the room, it was up at 95% and she was happy. That's one of the reasons they want him up as much as possible.

All this talk of oxygen reminds me of incentive spirometers!



The incentive spirometer is a tool that is used for people to practice taking deep breaths. You hold the handle on the left hand side, exhale deeply, then inhale while you have the tube with the mouthpiece on the left in your mouth. The blue thing in the middle goes up, up, up as you breathe in. It can be hard for people to breathe after surgery because expanding the lungs into the abdomen can be painful, but it's important to get enough oxygen into the blood so practicing is essential. The thing I think that's the greatest about it (besides that it measures numbers, and I like measuring things) is that it kind of hangs out in the bed with the patient, since patients are supposed to practice with it every hour or so when they wake up. So, while Spoons is asleep, the incentive spirometer (which is about the size of an elephant stuffed animal) is there keeping him company.

Before the surgery, the nurse explained how to use it, and Spoons breathed all the way out, put the tube in his mouth, and breathed in until the blue marker was all the way at the top (meaning he'd inhaled the equivalent of 4 liters of air!) and then just kept inhaling and inhaling as the marker was pushed against the top. The nurse laughed and said, "I've never seen anyone do that before!" Spoons blushed a little bit. Another doctor examining his lungs put it a different way: "You've got lungs for two people!" So, yesterday after the surgery, it was hard for me to see that he could barely get up to 500 instead of 4000. Today, he's up back toward 1500. Being an over-achieve-y oldest child (like someone else I know), I can see the concentration on his face when he uses it, aiming for that 4000. Nurses and doctors keep reminding him to use it, and his face says, "Yes, yes, I know. Trust me, I am doing it. You don't have to remind me"

Also, I know you all are waiting for a Jerry update! His blood clot surgery went well, and he's going home today. He and his wife Mary were frustrated that the doctors want to observe him a little longer after surgery, because they really wanted to leave by 12:15 since that's 24 hours of parking, which is already $42. They offered him lunch up here, but he's sending Mary to the cafeteria for coffee and a danish. Don't worry everybody: his wife is driving the car home to NJ, though he says "letting his wife drive the car may be worse for him letting him drive." Yeah.

up and at 'em

Good news for the morning: Spoons' doctors came by and said everything looked good, that he was "even ahead of the curve" for getting better. So, that's good. Spoons sat up for the first time since the surgery -- the nurse said that sitting up the first time should be the worst of the pain. Then, he stood up and walked around the room a little. It looked hard for him - he was a little dizzy at first, and nauseated, but he said it felt good to stretch out after being in bed for a day. The doctors said the goal would be to do 4 laps around the floor, 2 times sometime today, and then add laps every day after.

As for last night, Spoons' room at the hospital wasn't as quiet as I had hoped. About an hour after I wrote the post below, we got a roommate: an older guy named Jerry from NJ* who needed a lot of attention from the staff. They were just admitting him, so they had to go through zillions of questionnaires, his IV kept falling out, things were beeping, etc etc. It's kind of crazy to me that shared rooms are the norm, since so much otherwise-private stuff is going on. Even though there's a big curtain in the middle of the room, I could (actually, had to) overhear all his conversations with his wife on the phone and all the conversations with the doctors. Luckily, Spoons seemed to sleep through most if it, and when he was awake it was because people were coming in to check on him as well. There was a lull in activity from about 11 pm to 6 am, so I did get some sleep at last.

The plan for the rest of the day is for Spoons to try to walk as much as he can. Since the doctors we have do about two of this surgery every week, they have a very strong idea about what works best for recovery and they emphasize walking, walking, walking as much as possible.

Next time: incentive spirometers!

* Note: If you know Ryan, this Jerry from NJ was not, in fact, Ryan's dad (thankfully, as I would not wish for Mr. Kelly to be in the hospital) but there were certainly similarities. :)

bedtime: 7 pm

Spoons is safely installed and sleeping in his room at the hospital. I came down earlier in the afternoon and there was a roommate in his room, but as I started to unpack a few things, I heard his wife say "I am going to get you a private room!" So, I scared them away and we have a nice big room to ourselves, at least for now.

When I saw Spoons in the recovery room right after the surgery, he looked like himself, just so, so sleepy. He barely wanted to talk, but could squeeze hands once for yes and twice for no, and when I asked if he was feeling OK, he said yes, and if he needed anything, he said no. I could only stay there a few minutes, but it was good to see him.

When they moved him up to the room about an hour ago, he was talking more. One of the doctors came by to ask how he was feeling and he said "I've been better" with a smile. Overall, he's feeling fine and sleeping now but apparently the incision itself is really painful, as you might guess. As they were moving him into the room, one of the various tubes grazed his stomach and he said that felt pretty bad, so he is getting enough morphine to sleep well and not feel horrible, but not so much that he can't tell what's going on.

Since we got up today before 5 am and expect him to be poked and prodded early tomorrow, we are both calling it a night. They have a recliner thing that I can sleep in for the night, and I am so tired I think it will be easy. We'll see.

all over, all good

Just spoke with the surgeon, and the surgery is all over, and all went well. They removed everything they wanted to remove, and seem to have left the rest intact. :) I'll see spoons in an hour or so when he is in the recovery room. We'll get results from the biopsy of all the lymph nodes in a week or so.

wednesday

Hello all!

Rather than sending lots of emails, we'll collect information here for you to read at your leisure. Feel free to follow closely and comment or ignore it completely and just ask us how things are going when you see us. We don't expect that everybody wants the same level of detail! Since many people including our families are far away, I thought this would be an easy way to share information, but feel free to just call us if it doesn't work for you.

So far, not much has happened. We got to the hospital super early this morning, and spoons is in surgery now. I'll post something when it's over, should be Wednesday afternoon.