music as medicine

So yesterday was a great day.  Alan Ferber, Tim Albright and Dave Smith (big fans of Mom's and great musicians, all of  'em) came to Mom's apartment to play some music for her.  She loved it.  Clancy, Sarah, Casper and Ida were there, along with Mom's friend Alison Tassie, me, and her neighbor, Jennifer Cooper.  That's a lot of bodies in 250 square feet, but we made it work.  It was really great to hear the music.  I sang a few tunes with the guys too, which was fun.  

She's had a few exhausting days - there have been lots of grandkids around (which she swears is medicine to her, and I believe it), and just a lot of commotion, so she's pretty wiped out today, but in good spirits.  She's 100% focused on this appointment with Pietanza Wednesday, and the only prep for that is REST.  Clancy and Sarah are here to help out, which is good, and our Dad will be here tomorrow for a few days as well. She's still a big fan of the Whole Foods gatorade, went through multiple bottles yesterday, so that's good.  I can definitely see the sparkle in her eyes.  She was a little pale while everyone was there, but once she had some breathing room later on, her color started to come back.  I think as a general rule, we have to go easy on the visitors - not too many all at once, and not anyone for very long.  She is a social butterfly so will NEVER say "hey I really need to rest - can you get the hell out please?" so everyone who visits (or calls for that matter), please just keep her limited energy and social butterfly ways in mind, and plan to monitor yourself and the amount of time you're there.  That said, it's really really wonderful to see how many people love and adore her and want to come by and give her a squeeze, call and check in on her.  Keep it comin, but just please try to be cognizant of her need for rest too.  Thanks!

electrolytes r us

So since Mom got home from the hospital (about 4-5 days ago) we've been really concerned about how to best keep her hydrated so she doesn't have to go back there.  She doesn't really want to drink much these days because she's still throwing up and therefore a little tentative about what she puts in her system.  But finally yesterday we found something that she digs and will drink (yay!), and that will probably help her more than anything else.  I got some Whole Foods-version Gatorade yesterday and she loved it, almost went through two whole bottles.  So that's a happy thing.  Jenn and I have started to comprehend the subtle differences in her appearance when she's hydrated, so that's a good thing.  Hopefully it's something we can monitor a little better this time around.

Clancy, Jennifer, Mom and I all had a wee pow-wow at her apartment yesterday morning while Dan and Sarah DillonYork took the kids to the playground.  I don't know that we came to a decision of any sort, but we came up with more questions.  To me this feels like a decision that nobody outside of the medical world should be faced with, but I guess it's just the situation and there's nothing to be done.  It will of course ultimately be Mom's decision, so we'll see. We're pretty certain that Dr. P will push for at least one more round of chemo.

I feel like it's been an eternity since I've strongly thought about things like "what am I doing with my life" and "why aren't I in this place or that place".  All of that stuff is in some sort of pale out of focus shade right now, but it still somehow hovers in the background.  Everyone tells me it's important to live my life and still focus on fun things, good things, other things than cancer, but it's really hard.  The "my actual life" part is the hardest thing - funny eh?  I thought the day-to-day thing with Mom would be the hardest, but taking care of Mom and being there for her actually feels like something I was born to do.

Some good news today: my friends (and Mom's) Alan Ferber (trombone), Tim Albright (trombone) and Dave Smith (trumpet) are all coming over to Mom's to play some music for her this evening.  There may even be a bass player!  She's so excited.  It's going to do all of us a world of good I think - but especially Mom.

a little clarification

I was a little vague yesterday about what "stable" means--it just means that the sum of the growth and shrinking of the various tumors and lesions is about zero. It's good, but it's not remission or anything.

Clancy and family made it from the Ohio-Indiana border to New Jersey with a completely hosed clutch, and then had to stop. There is some brave combination of trains and tow trucks happening around now, and we're all meeting in the morning if everything goes reasonably well. Dan and I and the girls fly back to San Francisco tomorrow night.

She's been feeling sort of awful since the day she came home from the hospital: throwing up at least once a day, and today she had a new pain, in her ribs. It's really tough to keep her hydrated, and I suspect that we're already falling behind on that. The question of the moment is whether to go through another round of chemotherapy, or to stop. On the one hand, stopping treatment feels like admitting defeat, facing death, saying goodbye. But, as mom says, "I want to live until I die." Her doctor really wants her to try at least one more round. The three kids will put heads together tomorrow morning and try to figure out what we all think--the final decision will of course be made by herself, and will likely happen next week, when she goes to see Dr. P again on Wednesday.

stable disease

Test results are back, and the official word from Dr. P. is that the disease is stable and there are no tumor markers in the spinal fluid. That's good news, but it means that we're more confused about what to do next: the doctor wants to do at least one more round of chemotherapy after a little more of a break, after which she thinks we'll have a better idea about how Mom tolerates the therapy (the first one was quite soon after the end of radiation) and also about how well the disease responds. She has an appointment on Wednesday the 2nd, after which we hope to have a decision made about all this.

Today was a little tougher, in part we're sure because of how much she exerted herself (she was out of bed for like six hours! She ate a steak!). Hazel kisses are proving to be good medicine. Clancy and family arrive tomorrow sometime--they're on the road now, in their vegetable oil-converted Mercedes! Thanks so much to everyone for the good wishes.

Oh, and: Oona and I are going home with Dan and Hazel on Saturday, after all. I'll probably be back soon.

home again

This is just a quick one to say that she is in her freshly cleaned apartment, eating tzatziki and reading books to the grandkids. She has a new cane that is helping to stay steady on the numb right foot, and got herself here purely on her own power (plus that of the taxi). I keep asking her if she needs a nap and she keeps saying no. We still have no answers and are pretty confused about what will come next, but this is a good moment.

housing and work

So Clancy's coming to town in the next week sometime - he and his family are driving from Wisconsin, so however long it takes them to drive here.  If there's anyone in the New York area who has room for him and his family or who's leaving town or something and would be able to offer up a home, please let us know.  Clancy will be coming with his wife Sarah and their two kids, Casper and Ida, who are 6 and 4.  

Also, for those who don't know, Clancy is a mindblowingly talented carpenter, having built shelves and made stools into chairs, and done all kinds of amazing organizational work at Mom's apartment during his last visit.  Since we don't know how long these guys will need to stay in town, Clancy's mentioned that he'd like to find some carpentry work.  He has a few connections for jobs, but if any of you are in need of a carpenter, or know someone who might be, please let us know that as well.

Mom's in amazing spirits, really and truly.  She causes my chin to drop to the floor every time I see her.  She hasn't given up by any stretch.  In fact, the phrase she keeps using is "I'm so lucky."  It's just so Janet Ward to say something like that.  Thanks guys for all the big love.

the time question

Janet and Sarah
Originally uploaded by jecaly

Things have just kicked into high existential gear around here. I saw Dr. P. and her nurse Maureen in the hallway of the hospital today and we had one of those conversations you click past on daytime TV, with me asking about whether we can know yet how well her body's responding to chemo and how long does she have, and the doctor telling me that she has it really bad, that the tumor from her right lobe is growing so fast that it's in her neck now, and that the weekend doctor (one of the top guys in his field, recommended to us by lots of people when they heard she would be seen at MSKCC) wants to stop chemotherapy. Dr. P. is very thorough and careful, though, and so she wants to do two more tests before we decide whether to continue treatment. Mom had the second lumbar puncture aided by x-ray today (they did a great job; she had no pain. Both Sarah and I were there, standing guard by the door), and I think she had a CT scan about an hour ago, with Sarah there.

I think we'll have the results pretty soon. If there are cancer cells in her spinal fluid, and/or evidence that the chemotherapy isn't doing much, they'll stop treatment. If there is evidence that it's helping, we may continue. Either way, Dr. P's assessment is "weeks, months."

Just so all you who love her know: she doesn't want to be kept alive by artificial means. She doesn't want to be resuscitated. If there is some chance that she'll have some semblance of her life back, she wants that and will suffer through unpleasantness for it, but if there isn't, she will stop treatment.

Yes, we're all freaking out. Clancy's leaving Wisconsin on Thursday; my dad's making plans to come out, Lindsay arrives late this week, and I don't know what we're doing but at least Oona and I will probably stay.

spinal tap

Sadly, that's not a metaphor for something. They want to test her spinal fluid for cancer cells because of the strange symptoms she's having (wobbliness, numb bottom of foot, falling down). So a very nice and thorough man came in today to try to extract some. It hurt a lot. He explained everything he was doing, and he's done lots of them before and couldn't understand why, but he went through two full kits and couldn't get it. So they'll try again with the aid of an x-ray to pinpoint the spot better. She might still have another MRI in addition to that; apparently the neurologists don't agree about that yet. Deep thanks to Jeremiah and Sheila for watching Oona today; Sarah is with her now.

Oh, and they say she'll be there until at least Monday, now.

hooray for salt water

Well, after a full day and then some in the hospital, we're no closer to knowing whether there's a tumor wrapped around the main artery to her brain, but she who was starting to seem very husk-like and frail looks, after untold bags of saline plus some magnesium and potassium, like a plant that has been watered. there was no vomiting today, no as-needed pain medication for the neck, and she ate three full meals. That's THREE. FULL. MEALS. For the last few days, five string beans and three tomatoes have felt like a major victory, so this is very good news. Thanks to all who have offered to watch Oona, and thanks especially to Leda and Liz, who took care of her for so long today!

Sarah's last day of work was today, so we'll be at the hospital in shifts, trying to catch the elusive neurologist and to be there when she gets discharged. Stay tuned, sweet people, and we'll keep you posted.

morning news

They admitted her last night. They think that the tumor on her cervical spine is cutting off the blood flow to her brain (she has some numbness on the bottom of her right foot), and a team of doctors is meeting this morning to discuss what should be done. I'm going there when Oona wakes up, but I'm not sure they'll let me in with a baby; is anyone in New York around today and interested in playing with a baby for a little while? Call me: 415 310 4575.

i hate today

It's raining. It was hard to get to mom's place this morning because apparently in New York, when it rains all cabs go off duty and your brain goes all fuzzball about which way is downtown. But we got there, armed with our trusty half gallon of lemonade, about the only thing she wants to drink these days. Called the doctor, only to learn that we were supposed to be there for blood work. Sarah has her Sloan-Kettering card, though, so she messengers it. It's raining. The messenger takes a long time. After waiting awhile in the lobby of her building, we go upstairs to rest a minute. Finally, it comes. We go. She gets blood drawn. I spill coffee all over the lab. We start to head for home. Oona's hat falls off. Mom leans down to get it. I'm thinking, "don't do that! I'll do that!" but don't act fast enough and she FALLS DOWN on the rainy sidewalk. There's no one to call, come get us, she fell down! We have to get a cab in rainy Manhattan. This took awhile but we eventually succeeded, thanks in part to having a baby out there in the rain.

We were home for only a little while when Maureen, her doctor's nurse, called to tell us that the blood work came back showing that Mom is severely dehydrated and has low sodium levels (translation: not enough eating and drinking, too much throwing up) and she might want us to go in for fluids. Mom takes this as a challenge, drinking three glasses of water and eating more than she has in the past two days. Maureen calls back: we have to go in. The doctor agrees that those levels combined with the fall are just too much. Mom is devastated, a little, but agrees and we get ready to go.

So, to make a long story shorter: she's there now, having had one bag of fluids and getting one and a half more. She might stay the night. They did another CT scan of her head though, concerned about the wobbliness and falling, and it came back fine again.

chemotherapy makes you sick

She still feels pretty bad today, but a couple of things are making it a little easier to handle. One is that she has had a lot more energy today, telling stories and talking on the phone and not passing out in between--she's more composed, or something. The other is that we have news from the doctor that there is a 2-day "high" after each chemotherapy treatment followed by seven to ten days of, well, this: fatigue, body aches, mouth soreness, nausea, and generally feeling horrible. That describes her experience so far, and we're hoping that it means she'll feel better next week (and then worse, and then better, and then worse, and then better). In the meantime, it's a good day (like today!) when she stands up for a moment to brush her teeth.

today

Oona and I arrived in New York yesterday morning and are settled into this amazing apartment, thanks to Amanda and Sarah and Douglas. Mom's first days after chemotherapy have been mostly good--her pain is better, and the nausea hasn't been bad, thanks in part to the medication they gave her for it.

But she had a rough night last night, and felt so poorly this morning that she wasn't able to get up to eat and take her meds, and clueless me didn't realize that if she doesn't answer the phone it means go there now, so she didn't get her pain medication or steroid pill or the other three she's supposed to take with breakfast until 2 hours later than normal. Bad nurse. She also has a little fever today--100.5, so borderline for alerting her doctor, but I called anyway--we'll probably take her in if it goes much higher, but I really don't want to drag her to Urgent Care to get another x-ray, blood work and other tests unless it's really warranted--she's just not up for a cab ride right now, and needs sleep more than anything, I think. She and Oona are napping together now; for a bit I couldn't tell whose breathing I was hearing.

first dose of chemo

So yesterday was pretty amazing, I have to say. Mom was a certifiable rockstar - holding true to the pattern thus far.

We arrived at Sloan around 8am for Mom's 8:15 appointment with Dr. Pietanza. Our friend Susannah (daughter of Gina Karlsson who used to babysit Clancy and Jennifer and certifiable rockstar in her own right) joined us and was there all day with us - made a huge difference. They took Mom's vitals. She has dropped more weight, which we all kind of knew, and her blood pressure is a bit low, but otherwise she is doing well. Dr. Pietanza filled us in again on what to expect with the chemo (hair loss, some nausea, possible pain in the bones and joints, fatigue). It turns out that Mom will have treatment once every THREE weeks, not once every two weeks. She also listened to Mom's lungs and said that they sound much better now than the last time she saw her - mid-February. Mom will have another appt with Dr. Pietanza in two weeks.

We went back to the waiting room for a bit after the exam, and then we were brought back to the "chemotherapy suite" - a suite indeed! We had our own little room - given the option, Mom wisely chose a bed over a chair - with a lovely sliding door and little wood cutout window frames, plants in the window. It was just a really nice room, serene, pleasant, and as Susannah put it "like a Japanese hotel room".

We met Sarah, Mom's fabulous nurse, who is my exact age, super sweet and really bright. Sloan makes an effort to hook each patient up with the same nurse for each treatment, so that's kinda cool. I like the consistency. She did a "teaching session" with us, talked more about the side effects, discussed the different anti-nausea medications, and also went over the plan to decrease the steroids. It looks like Mom will be off steroids completely by early April.

So then Sarah started an IV after finding an appropriate vein (good times!), and then administered a saline solution to Mom along with some "pre-meds"to help prep her veins and system for the chemo. Susannah and I jumped out at that point to grab some lunch, and Sarah waited for our return before she began the chemo. So at about 2pm they started giving Mom the first part of the chemo cocktail, which was Taxol. At the start of each chemo treatment, there will always be two nurses in the room: one to check Mom's info & the drug info on a chart and the other to verify that the same exact info is on the drug itself, before administering it. Pretty cool.

So the Taxol took about 3 hours, during which time Mom ate lunch (Sloan provides lunch when there's a long treatment...she had a cobb salad and ate every last bite. I took a picture of the empty container and will try to post it later!). She also slept for about 1.5 hours of it, which was totally amazing and wonderful. Sarah stayed with us for the first 15 minutes of the Taxol part, because she said if Mom were going to have a bad reaction it would happen then. She slept and ate so needless to say, she was fine. After the Taxol they gave her a bit more saline, followed by the Carboplatin, which took about 30 minutes. We all applauded when she finished the Carboplatin - first treatment DONE!

I wrote out a new chart for Mom so she knows which drugs to take when, and so far so good. She had a little urpiness but was mainly just tired after we left. She had dinner, went to sleep, and successfully took her meds this morning.

All is well.

good days and bad

Yesterday was a bad day, and even though I know it's not the case, it made me feel all alone and I kind of fell apart. Mom was nauseous all day and couldn't get out of bed yesterday, couldn't walk across the room to take her meds, so I ended up leaving work early to help her with that (after sitting at work worrying like a cat in a room full of rocking chairs).  We heard from the doctor in the afternoon and found out the nausea was due to the reduction in her steroid intake - happened too fast for her system, apparently.  

But I'm frustrated because, up to now, I thought that she was able to tell me when she really needs me - she has done it a few times so far.  But yesterday she couldn't do that and it made me panic - like oh okay, I need to read between the lines to figure out when "I'm okay Sarah" actually means "I need you - please come over".  I told her - as my friend Jutta said - that it's fine to tell other people that she's okay when she's not, but she HAS to tell her family, and especially me since I'm here and can be there.

I'm a little bit lost today - lost, scared, and feeling very alone.  I had a good talk with Mom's friend Jennifer last night and she reminded me that I'm going to have good days and bad days just like Mom will.  I guess I didn't really think about that, but she's totally right.

Thanks everyone for all of the calls, cards and support.  It's great to see how much love is out there.

I will go over to her apt tonight after my internship to spend the night, take her to chemo in the morning.  I'll find out all of the details of chemo tomorrow and try to report back then, but as a reminder to those who want to visit (and I'm sorry if this sounds at all harsh):  please make sure you're in good health before you visit her. From my understanding, chemo kills the good and bad cells all at once, so her system will be more susceptible to infection, sickness, etc. than usual.  Don't mind me - protective as usual.

Jennifer comes to town with Oona on Saturday morning and I feel like I'm crawling through the desert, trying to make it to that day.  She'll be here for two weeks and I can't wait.

radiation finished and clancy visit

Mom had her last radiation appointment on Friday morning.  So we are done with radiation for the foreseeable future.  Clancy's leaving on Monday morning after a week of help, music, and lots of construction!  Thank you Clancy!!  He rearranged Mom's apartment, and with the help of Mom's friend Skyler:  built a shelf and extension for her desk (including a spot for her typewriter), put up a high shelf, and added to the nook-feel of the kitchen area by adding a few shelves there.  The place has been transformed into what Mom calls her "hobbit house."  

Clancy and I had some good sibling time on Saturday and even were able to get some music-nerd time in!  He also put up a shelf in my house - yay!

Mom's pain has been a little better every day, although her energy is still low.  Chemo starts Wednesday and I will go with her to that first appointment.  Jennifer will arrive with Miss Oona Saturday morning, and will be joined by Dan and Miss Hazel a week after that. Yay for all of that.

One

day

at

a

time

herself

Here's a photo of Janet from just before her bronchoscopy last Wednesday, managing to make the hospital gown look borderline stylish.

poem about mom

Mom's friend Laura Bailey just sent this poem she wrote about Mom. I just read it aloud to Mom and asked her if I could post it. She responded, "Absolutely!"

JANET IS SO NEW YORK

Janet is so New York she keeps her compassion in her shoe just in case someone tries to rob her of it.

Janet’s hair is as shiny and black as the molding around rehearsal space doors.

Janet’s hello comes at your head like a huge sandwich in a lunch hour deli.

Janet’s soul is a charming efficiency with a galley kitchen and a Murphy bed, it is rent controlled and you cannot have it at any price.

Janet has shoes that are taxi cab yellow and stop suddenly for no reason.

Janet is so New York that her pin number is -- a-five- six- seven- eight.

At night, Janet snoozes on her window sill, wearing neon pajamas while a sax player lies in her bathtub playing her dreams out.

Janet knows why homeless people- who have nothing - have dogs.

Janet is so New York, her thoughts travel on foot and carry water bottles.

There are many living stories in Janet’s naked head.

appt with Dr. Ho

So yesterday Clancy and I went with Mom to her checkup with Dr. Ho, her radiation oncologist, after the 8th radiation treatment. Dr. Ho wants to slowly decrease the number of steroid pills Mom takes every day, although she will need to take 5 steroid pills the night before and 5 the morning of her first chemo treatment, Wed March 12th.

Dr. Ho is so sweet and direct and caring. I really dig her. And Mom does too. So the last radiation treatment is happening tomorrow morning, but Dr. Ho said the effects of radiation will be felt for awhile after that, so that's good. Hopefully Mom's neck pain will soon be a distant memory for all of us!

Since radiation treatment ends tomorrow, going forward Mom will be primarily in the care of Dr. Piatanza.

It's so great to have Clancy in town. He's really helping Mom and I both slow down a bit and take a breath. He's just such a rock too - I have to say, it's nice to lean. And he has rearranged Mom's apartment so she now has a bona fide kitchen "nook" and easy access to her computer and desk. Yay! We also got a clamp light for her at the hardware store yesterday so now it's not such a dark cave in there (although Mom's a total cavedweller!).

She's not 100% on email just yet, but hopefully she will be able to at least read emails soon. Meanwhile, keep those calls coming, people!

a little venting

So yesterday was a good day for Mom. Her pain was much improved and she even managed to go food shopping for her own self after her radiation appointment! She also did a load of laundry which, to me seemed like pushing it, but I guess she just wanted everything to be in order for Clancy's arrival. Sorta sweet. It's really great to have him here. He arrived last night. I went up to see them at Mom's after my internship. Mom's good friend and neighbor Jennifer Cooper was there too (thanks Jennifer for your fabulous energy!), and it was great to just talk about other things, hang out, be together and laugh. There's something about plain ol' laughter that's such strong medicine these days.

I got really worried about Mom though as I sat there watching her last night. I could tell as soon as I walked in the door that she'd overexerted herself yesterday. She just looked really wiped out and in a bit of pain. The wheeze started to come back a bit the longer I stayed and she started to cough more too. She said this happens every night - the cough returns a bit - but I dunno, I just left with a weird pit in my stomach, feeling helpless as usual.

I know that the radiation is helping her neck and that she's in much better shape now than even a week ago, but the whole "one step forward, two steps back" element of this situation really gives me the howling fantods sometimes.

I'm just sayin.

my tidbits

I was en route to a haircut when we had this conference call so my notes are limited as well. But I saw Mom yesterday, looked through some of her notes/pamphlets, and found out that the drug they're nixing from the cocktail is Avastin. Apparently that drug could potentially affect her hearing; hearing on the right side has been a bit wonky already due to the neck pains so...that's a no go. They are taking good care of her.

Her pain was actually much better yesterday - actual periods of sitting up without pain. My friend Leslie is in town (used to live in New York, LOVES Mom) and we hung out with Mom all afternoon, gave her a pedicure and changed her sheets. That was all in the midst of many many phone calls, each of which Mom thoroughly dug. She's really loving all of the human contact these days, so don't be afraid to call her.

Her spirits are in really good shape too, I have to say. She's very zen about this whole thing - really wanting to fight it but also accepting that this is the situation now...as a social worker I met with last week put it, "the new normal." Clancy tomorrow - yay!

squamous

The pathology results are in: the cells are officially squamous cell carcinoma, not adenocarcinoma. Is that good or bad? I can't really tell from my layperson interwebs research. I know one type is supposed to be more treatable than the other. As a result of this information, one of the drugs was removed from her future chemotherapy cocktail, and the schedule was changed a bit--to, I believe, treatment more often than they had been planning. Sorry, I was in the car and took bad notes. Next week is the last week of radiation, and then chemotherapy starts on Wednesday, the 12th.