new york unofficial memorial

As Jenn mentioned, the official memorial for Mom will be in a few weeks, but this weekend I think it would be a good good thing for everyone who's in New York to come together and love on one another a bit.  

If you feel so inclined, please come by my East Village apartment this coming Saturday.  We'll have an unofficial Janet Ward celebration.  I have a studio apartment, but I had a wine party here a few years ago and the place was packed, so we'll make it work.

Feel free to bring food, wine, whisky or just yourselves, your pictures and your stories. I'm feeling a strong need for the people. I know there are so many who love her and were impacted by her energy and spirit in a totally inexpressible and profound way, so stop by if you can any time after 1pm this Saturday, May 3rd. It'll just be an open house so come by, on into the evening. I'm at 59 East 3rd Street #5D, between 1st and 2nd Avenues.

Thanks all for everything you've done and continue to do.  Love love and love.

she's gone

She died today, around 3:00 this afternoon Eastern Time, surrounded by many visitors, and very peacefully. My cousin Danielle described her passing as: "she breathed in, and breathed out. Breathed in, breathed out. Breathed in, breathed out. And then we waited for her to take another breath, and she just didn't." So, it was as peaceful as we could have wished for, and she got her wish of not having a long time as a sick person, and now she's just photos and poems and the bits of us that she made better.

There will be a service in New York sometime during the week of May 23. Her remains are being donated to medical research, according to her wishes. If you're on the west coast and want to come to a memorial of some kind out here, let me know--I'll probably host something informal at my house, possibly in a week and a half or so. Sarah will likely have people over on Saturday sometime, but I'll let her post about that.

Love to all.

getting close

From all Sarah's accounts (I've been away from New York since Friday), she's been much worse ever since transferring to Calvary: it reached the point today where she isn't really eating or drinking anything, even when a straw is held to her lips. She doesn't talk, but makes appreciative noises (the infamous-in-our-family "hmmmm") when someone is reading or playing something she likes. Sarah asked the doctor there today the time question, and got an alarming answer: 24 to 72 hours. Hours. We're taking her assessment with a grain of salt, since she's only known Mom for a week, but she is starting to act like she's on her way out, and we've never been through anything like this before, but it doesn't seem like it will be long.

Other people have these months-long dying processes, or get diagnosed with alarming cancers and continue to live for many months afterward, but this has just been one horrifying downward, smoke-spewing spiral. We have all (including her) said since the beginning that if she can have her life back, we want that, but we don't want some endless-seeming suffering. "I feel like I'm turning into something else," she said to Sarah and me while we were waiting for the second spinal tap a few mere weeks ago. It's hard to face what's coming, though.

Visitors are still welcome, though the food mentioned in Sarah's last post might be moot at this point. Love.

hard

So today was really really hard.  I went to see Mom at the hospital - met our friend Miriam and my Aunt Judi there - and she was so so out of it, asleep, but druggily so.  We literally could not wake her up.  I finally talked to a doctor (one filling in this weekend, not the regular doctor) who looked at her history and chart and said she thinks it's a combination of the pain meds and the progression of the disease. They agreed to lower her dosage of morphine and see how it affects her alertness, and how she then manages the pain.  Their main concern is her comfort, and while I understand that, I know that she doesn't want to exist in this state.  She needs to be in the room. She was a little more alert when I left this evening (a few hours later), but not too much.  She did wake up to eat, and ate even better than yesterday, so that's good.  

Also, Judi bought a little Discman and some headphones for her - she's still in a shared room - and Mom listened for awhile to a recording our friend Carla sent of Nikki Giovanni reading her poems.  She dug that.  Then I decided to try some music.  I put on Alan Ferber's first nonet album, and Mom burst into tears, perked right up, and I could tell was really impacted by the music. Oh the power of music.

When you guys visit, maybe bring some things you can read to her, things to engage her a bit (along with your squeezes and hand strokes).  Also.  The food is less than stellar at this place, and she's kind of beholden to whatever they're offering (no menu really), so bringing little things to eat for her like: cottage cheese, ice cream, a vanilla shake, and other relatively liquidy yummy snacks, would be great.  She's able to chew and swallow, but the liquid(ish) stuff is easier for her.  Calvary will label and keep food for her for up to 48 hours.

she's doing okay

So I saw Mom today and she was doing much better than yesterday - especially after I performed food-Nazi duties and forced her to eat her soup/bread/milk.  She did very well!

I can't help but be a little sad and brokenhearted that she's no longer at Sloan, with Dr. P sitting by her bedside, the "fine bouquet of foods" and sweet staff of nurses.  Calvary has a totally different vibe - they're very sweet there, but it's just different and I guess Mom's not the only one adjusting.

She was pretty out of it yesterday - falling asleep midsentence and the like - but today she perked up pretty shortly after my friend Tracy and I arrived (my Aunt Judi was there too - in town, staying at Mom's place, until next Thurs).  Her food came while we were there, and I pretty much forced her to eat as much as she could (little did I know that someday I'd be using my Dad's words: "just two more big bites!" on my Mom).  

So.

For those who want to visit and/or send flowers, cards, letters, etc., here is the mailing address for now (I say "for now" because she's still in a shared room, a temporary situation):

Janet Ward

Calvary Hospital, Room 307A

150 55th Street

Brooklyn, NY  11220

Please feel free to visit her at the hospital.  Enter at the main entrance, walk up the escalator, and ask them at the Information Desk to direct you to Calvary Hospital.  

My Aunt Judi is with her every day, as am I, but I think all visitors are really good for her right now.  Of course you may get there and find that she's sleeping, but even so, I think just being in the room is a good, good thing for her right now.  Squeeze a hand, stroke a cheek.

I would also ask that, for EVERYONE who visits - do me a favor and, should you be there while Mom gets a meal of any kind, please please encourage her to eat, and when I say encourage, I mean nag.  She's still feeling the effects of brain radiation, the move, etc., so she's weak and wiped out.  Nourishment is just of the utmost importance right now....also, good energy, love and big hugs.  These will all help her.  I was amazed to watch her transformation in just a few short hours: all we did was hold her hand, make her laugh, read some letters to her, tell some stories, and of course forcefeed her. Heh.  So if I can see the difference in a few short hours, then it seems to me that it's very real.

Please let's all help to make her strong.  We want Janet Ward, through and through, for as long as we can have her.

she's there

After a very sweet and gentle ambulance transfer, and heartfelt goodbyes from all the nurses and doctors on the 14th floor, she's at Calvary Hospital in Lutheran Medical Center, in Brooklyn. She's in great spirits, and very happy to be there. Let's give her a break from visitors for a few days while she settles in. Thanks to all for your good wishes--and especially to Ben, who helped us figure out the many twists and turns of today. Love.

going to brooklyn

We just found out that they have a bed for Mom and she will move to Brooklyn today sometime (don't know when exactly).

YAY!  

My good friend Alicia and I are moving the stuff she'll want from her apartment (postcards, music, books, sweats).

Jennifer and Mom's friend Ben are with her in the hospital right now.  They'll hopefully ride to Brooklyn in the ambulance with Mom. 

More soon!

brooklyn hospice visit

We liked the Brooklyn facility a lot.

Jenn, Oona and I took the train down there this morning, and the people there were very warm and sweet.  We talked to the head doctor, who was very nice.  He asked our Mom's name and I assured him that she would quickly become his favorite patient.  His answer: oy vey.

It's all wood and glass in there, and there's a lot of natural light.  Just as in the Bronx, visitors are welcome 24/7.

Meanwhile at MSK, Mom apparently informed the powers that be that she'd like to go to Brooklyn instead of the Bronx (this was before we even reported back so I guess she had an instinct).  Here's how it'll go:  If a room opens up in the Bronx facility first, she will go there initially, but meanwhile she's on the top of the list (we think) to get to Brooklyn as soon as a room is available.  We're hoping there will be one move, not two, but who knows.  We'll of course post an update as soon as her location changes.

Our Grandpa flies out this afternoon - he's been such an amazing support and help with Oona (she adores him) and a real sturdy post for Jenn and I to lean on (Jenn said it's like having a grown-up in the room - heh).  He also got to see Clancy, Sarah and the kids on the tail end of their stay here, so that was way good.

Tomorrow Jenn and I will head to Mom's apartment to start trying to organize a bit. Thanks everyone, for all the offers of moving help.  We will try to get organized and ask for help as we need it. 

Visitors are welcome at Sloan.  As Jenn mentioned in a comment a few days ago, Mom's in Room 1412B, which can be accessed by entering at 1275 York Avenue, walking up the escalator and taking the M elevators to the 14th floor.  As always, please be healthy when you visit, clean your hands when you enter the room and try not to stay longer than an hour or so.  She's pretty wiped out these days from all of the radiation, and needs lots of rest.

Also, out-of-towners are of course welcome.  Everyone's been asking me when would be a "good time".  I'd say a good time is whenever you feel like it.  Mom has scores of fans and admirers, so there' s a constant flux of people around, but I think that's good.  Don't be shy.  

hospice investigation

My Grandpa and I took the long (l-o-n-g long) train/bus ride to Calvary Hospital, which is the inpatient hospice Pietanza recommends.  They have two campuses: one in the Bronx and one in Brooklyn.  We saw the one in the Bronx today, which is an all-hospice hospital.  The catchphrase in the entryway declares "where life continues".  Harumph.

We took a tour of the place and here's some of the information we have:

• she'd have her own private 12x12 room and a shared bathroom (one other patient)
• her stuff can be all over the room, just not taped to the walls
• visitors are allowed 24/7, kids of all ages included
• there's an outdoor terrace
• the ratio of nurses to patients is 1:8
• her doctor (no longer Pietanza, once she's in the facility - sadness) would check on her once a day, and she'd also be under the care of a dietician
• there are 4 floors of patients, with 50 patients on each floor
• The Bronx is really annoying and desolate and far far away 

So tomorrow we'll go to Brooklyn, where the Calvary Hospital hospice facility is made up of only 25 beds in an actual hospital.  The appeal to us of hospice in actual hospital rather than hospice-only lies with the "some people are getting up out of bed, going home and getting better" concept - something about that energy swirling about makes us hopeful, or more hopeful at least, for Mom's contentment.

The trip to the Bronx was almost an hour exactly (bus and train included) from the 68th St subway station to Calvary Hospital.  We'll see how it goes tomorrow - we're going in the morning.

As a side note: for those who may have known about my upcoming gig at Bar Next Door on Monday the 28th, just wanted to let you know that I'm canceling.  Things are just too raw, and the thought of losing it in front of an audience, or when given hugs by any of those audience members: blech.  Can't deal.  Maybe part of it too is that Mom has been to so many gigs of mine, and although she suggested that I just leave out all tracks from my album as a way to avoid tears - well, it's a nice thought, but every song reminds me of her.

stopping treatment

Well, we knew this was coming, but it doesn't make it any easier: she's too sick to have chemotherapy, too sick to do anything, really--so they're stopping treatment. She'll be moved to Calvary Hospital (which could SO have a better name) in the Bronx, the best place for in-patient "palliative care," apparently. She'll have her own room. She'll have different doctors, whose job it will be to keep her comfortable. Dr. P, when pressed, said that she didn't think Mom would live two months. She'll likely be there by the end of the week, so check here for updates before going to visit.

She'll be moving out of her apartment, so if you want to help with that, there will be opportunity over the next few weeks. If anyone has moving boxes laying about, we can use them--for now, we're just working on moving the complete works of Samuel Beckett to her new room, but later we'll be actually packing stuff to move out.

Sorry for the dull tone of this--we're heartbroken and exhausted, and I can't think of a better way to say it.

like weather

She had great energy yesterday and was very much herself--or, the version of herself that can't move out of bed or breathe very well--she was telling stories all day, and was definitely less floaty. My grampa brought clippers to the hospital last night and gave her another headshaving; I haven't seen it yet because Oona and I spent the morning moving out of the Brooklyn place, and Oona is napping now at Sarah's, so when she wakes up we'll go to the hospital.

now

Well, I don't think that anymore, so I guess I should post again. She goes from the mask to the tube and back again, threw up several times yesterday and the day before, can barely move from bed (although did today, once), and is recovering from hives she got from an allergy she developed to one of the antibiotics. She's also more, I don't know--Sarah and I are using the word "floaty." Her eyes do this strange REM sleep looking-for-something-in-space thing. Her sentences trail off. She goes back and forth between very lucid and really out of it. My grampa says she's just tired, and maybe that's true. She had three radiation treatments this week, and will have another tomorrow and the last one on Sunday or Monday. Then, supposedly, we wait seven days and she gets another dose of chemotherapy, but we can't imagine her getting to a state where that's possible: you have to be able to walk through the door to get chemo.

Oona and I are still in New York--I got alarmed by the floatiness, I guess; it just seemed wrong to leave. We're staying in Brooklyn through the weekend, then moving in with Sarah till Friday and trying Operation Get Oona to Sleep in the Kitchen again. If anyone is up for staying with her in Sarah's East Village place some night so we can have a sister date and process a bit, please let me know. She actually sleeps at night now, hooray!

And for a bit of levity, here is a photo of Oona enjoying a very amazing pumpernickel bagel in Brooklyn today:

stable and holding

We were all at the hospital with her today: my Grampa, Clancy, Sarah and I. She had a radiation treatment (5th of 10) in the morning, and in the afternoon, Dr. P. came to talk to us. She said that Mom's condition is stable (up from critical and tenuous, two few days ago), but said that she'll be in the hospital for many days--at least over the weekend--while they get her breathing on her own. She currently has an oxygen mask, along with various breathing treatments.

They'll start physical therapy on her chest tomorrow, too, to loosen any mucous and keep yesterday's bronchoscopy from having to be repeated too soon. The tumor in her right lung has grown, but the fluid around her heart turned out to be a very small amount when they did an echocardiogram, not significant enough to need treatment. Dr. P is hopeful that we'll be able to start chemo a week after she's done with radiation, to keep the growth of the tumors in check.

So all in all, we got fair news today--she's not well, but she's not as bad as we thought. She has a wry sort of sassiness, these days, and isn't in too much pain. Oona and I will head home on Friday.

she's doing well

So I met with Dr. Park after they finished the bronchoscopy. It took about two hours all told, and he was happy with the results. He said that mucuous and necrotic material had built up in the stent, so it definitely was not functioning properly. Because the stent failed to function, the entire lung collapsed, thus severely disrupting Mom's breathing. He said they used full anesthesia during the surgery although they had planned to use partial, but now in recovery, she was breathing on her own (i.e. without a breathing tube).  

Park wants to send Mom home from the hospital with something called a nebulizer, which she can have every 4 hours, and is a means of keeping the airway free of muck (aren't I technical?). There was mention of this the last time she was in the hospital but in the end we were sent home nebulizerless, so this time we will jump up and down.  

She'll spend the night tonight in recovery. She's doing well and is in good spirits - also talking more, which means she's breathing easier. Grandpa and Jennifer came back to the hospital from Brooklyn after I talked to Jenn, mid-bronchoscopy, and she realized that I was a bit wonky on my own there (I didn't actually tell her - she heard something in my voice.  Gotta love siblings). When they arrived at the hospital, the three of us found a local pub, had a beer and a bite, then came back to the hospital to visit with Mom in recovery. From the time I talked to Park to the time we saw Mom, it was about 90 minutes or so. She's in good hands in recovery, and will be back in her own room tomorrow morning, we think.

Hopefully she'll be back home to her house before the end of the week.

in bronchoscopy now

I'm once again in the waiting room while Mom gets a bronchoscopy. I saw Dr. Park in pre-surgery, and he said that I shouldn't leave the building because this will be quick (that really means that the procedure itself will be quick but NOT that Mom will be out of recovery quickly - that always takes a bit of time). I will have a meeting with him when the surgery is finished and he'll update me on everything.

She's doing okay - spent the day with Clancy & Jennifer, and I got here around 4pm. She had a procedure earlier today that inserted some contraption into her veins and will hopefully prevent future blood clots. She's still using the heavy duty oxygen mask, and is pretty weak. But you'd be weak too if you hadn't eaten a scrap in more than 24 hours (no eating before bronchoscopies...them's the berries).

She was pretty tired before surgery - slept a bit while I watched, so that was good. Our Grandpa's here and o'course Jennifer and Oona. It's good to all be together. More updates soon.

a little more info

Tomorrow morning, first thing, Mom will have another bronchoscopy with Dr. Park. They're performing it in an operating room this time, rather than the usual bronchoscopy suite, because of the precarious situation with her heart and lungs, They want to be sure that all of the tools and equipment that might prove necessary, in the event of an emergency, are right there at their fingertips.

Erin, Dr. Pietanza's assistant, came to meet with us several times throughout the day, and when she stopped by for the last time, in the evening, she said that all of the issues Mom's dealing with right now are reversible but we just have to be careful (in other words Mom can't really move around at all for now because her breathing and oxygen levels become highly disrupted).We need to make certain that Mom doesn't get sicker before we have the chance to fix what's wrong. The fluid around her heart has revealed itself to be a result of dehydration, and nothing worse, so that's good news.  She is on fluids, and they've also changed her anticoagulant medication - apparently her system grew too accustomed to the daily Lovenox injections, so it then became ineffective.  Hopefully the new medication will take care of the blood clot in the lungs (pulmonary embolism).  

Jenn and Oona, Grandpa - tomorrow.

tenuous

The news is bad today. Her breathing trouble stems from a few thinga: a blood clot in her right lung, fluid around her heart, and the stent in her trachea appears to have moved. A CT scan today revealed that her entire right lung is basically collapsed (that's the one that they had given up on). Dr. P describes her situation as "tenuous." I'm writing this in between packing to head out with Oona on a redeye tonight. She can't walk more than a few steps without getting utterly winded, and was unable to breathe today even with a full oxygen mask on. They're going to do everything they can for her, and all the above problems are, to some extent, treatable, but the scary part is that she doesn't have much strength right now for healing. Please send whatever good juice you've got.

Oh, and here's a photo of her "in happier times," with Clancy and Ida, mere days ago.

back in urgent care

When Mom left for her radiation appointment today, she was in pretty bad shape - having trouble breathing and very weak.   Mom's friend Katrin who's been in town and staying with Mom since Thursday called me, very worried.  I guess the guys at Sloan weren't happy with her condition either, because she's now in Urgent Care, and on oxygen.  Heading to the hospital in a few - more later.

weekend off

Mom had the 5th round of brain radiation yesterday, and all is well there. She met with Drs. Ho and Houseman, and they want to begin the process (once again) on Monday of weaning her off the steroids. She has one more week of radiation, followed by a break and then most likely the 2nd round of chemo. We will meet with Dr. Pietanza at some point in the coming week or two to check in, reassess.  

Her spirits are still great. Her appetite has also gotten a lot better, so that's good to see, and I think we have wiped out the dehydration monster at last. Katrin has been in town since Thursday and is working her usual wonders - they're having a great visit. Our Grandpa will be here Tuesday for a week, which'll be great too. Clancy & the fam are still in town. Clancy's found some construction work (thanks everyone for all of the efforts in that regard) and a basement apartment in Williamsburg, through a friend of a friend. The family they're staying with even has homeschoolers so it's a good match.Not sure how long they'll be here but I'm guessing at least another week. It's really good to see the people on a regular basis. And I know Mom's loving every second with those grandkids.   

still tired

So today was Day 4 of brain radiation, and it's still wiping Mom out. Her spirits have been amazing this week though, I have to say. She's been very talkative and vivacious, also very sassy, which is always good to see. She had nausea yesterday but didn't throw up - hooray! Tomorrow Mom will meet with Drs. Ho and Houseman (both radiation oncologists) so they can check in on her progress. We have one more week of brain radiation to go.

Ben was in town yesterday and visited with Mom for awhile last night. This weekend Gemma - Mom's director friend from CA - will be in town to see her, and this afternoon Katrin will be back in town, staying with Mom for the weekend.  Tuesday my Grandpa (Mom's stepdad) will be here for a week. There's lots of love and support around and that's great.  

I met with a social worker yesterday, in prep for the group therapy thing. I was amazed by how different I felt in that session yesterday as compared to our first one, in February. I feel like I've lived three lifetimes since February. The social worker told me I seem less in a state of crisis now, but I know I'm not used to this, nor will I ever be. Sometimes I forget for a minute - just a minute - but then it comes back to me like some kind of a brick in my belly.

Thanks everyone for all of the lovely bouquets. Mom's apartment is so fragrant right now, and I think the beauty of those flowers is really helping her - such a simple yet effective thing. Last night she had me move several bouquets around to just the right spot (note sassy comment above). Hey man, whatever I can do. 

first round of new radiation

So the Mama's pretty tired today.  I talked to her a few times post-radiation, and she sounded really really tired, said she just wants to sleep.  I think it went pretty well, although she did say it was hard.  I can't imagine.

They've moved her daily appointment up from 3pm to 9:30am, so at least she will get it over with early in the day.  They told us that radiation on the brain is a bit more exhausting (no surprise there I guess) than radiation on other parts, so I guess that's turning out to be true.

The docs also amped up her steroids again - she is now up to 16mgs a day.  The steroids supposedly help with the swelling in the brain, one of the primary causes of nausea for her these days.  The idea is that, once the swelling goes down, the nausea will subside, and maybe she'll feel better.  Hopefully the radiation will start to kick in/kick some ass soon too.

I'm just sad that she has to go through this.  It ain't right.  Choices in life should not be limited to nausea or exhaustion - especially not for Janet Ward.

In other news, I've decided to try to out a support group.  A social worker that I met with at Sloan in February (and will meet with again this week) suggested a support group, but at the time I really wasn't ready.  I think now I'm ready to hear what everyone else is going through. There are some options here and here. There are even some online support groups available, which is kind of intriguing. Might be scary and claustrophobia-inducing to be in a room with 10 other people whose moms, dads, siblings or kids have lung cancer. But we'll see - it's worth a shot.

home again home again lalala

Mom finally left the hospital around 8:30 Thursday night.  Clancy was with her all day and accompanied her home.  She is soooooooooo happy to be home and I for one am really happy to see her there.  That hospital is nice, but home is home.

She had the brain mapping on Thursday, which I think was a  bit torturous (lying completely still for 45 minutes) but these people are very thorough, and that's a good thing.  She begins radiation to her brain on Monday afternoon.  She will have 10 sessions (M-F), followed by a break of about a week or more, and then we'll decide whether or not to continue with a 2nd round of chemo.  As it stands now, it looks like we will continue.  

As Mom says, "We will get through this."

day of planning

So as of this moment Mom is still at the hospital, but she will go home tonight.  This morning we had a very successful meeting with Dr. Pietanza.  Ben, Mom, Clancy and I were all in the room.

Here are some words from Ben about this morning:

"It’s the in-between time that’s the hardest,” Janet said this morning as we waited for Dr. Pietanza to arrive. With last evening’s good news more fully digested the morning meeting felt less ominous – especially after a bowl of cream of wheat with banana, four whole slices of bacon and a hot cup of tea. Breakfast was followed by a hot shower (with Sarah’s loving assistance) and back into a clean bed. A good start to the day for certain.

The echo of Dr. Pietanza’s heels purposefully hitting the floor announced her arrival before she poked her head around the curtain. I think we all (Janet, Clancy, Sarah and Ben) held our breath as the long-awaited meeting got under way.

“Amazing” – there is simply no other word to describe Pietanza. She sat down on the bed and immediately took Janet’s hand and asked how she was feeling…. “Better,” was the answer offered up with a sense of certain, renewed energy.

A brief exchange was followed by a general overview: The cancer is now in the lining of the brain and there is a strong sense this is the cause of the nausea rather than post-chemo impact. Obviously, dealing with the brain spots and their effects is the first priority. In order to do that, the next step is a series of radiation treatments (10 doses over a period of about 2 weeks). This radiation precedes round two of chemo. This radiation will be ‘whole brain’ radiation which will deal not only with the three identified spots but also any other cancer cells that may be active in the brain lining (we liked this sentiment).

Knowing there were sheets of paper dripping with questions, Dr. P. decided to let the onslaught commence rather than continuing her monologue. And so we all began with our questions and she followed with the answers she had…

What’s the risk of radiation on the brain? Not much more risk than with the previous neck radiation she had on C2/C3 of the spine. Fatigue is likely and that varies by patient. There is limited risk of cognitive impairment but that is not likely and not a concern of Dr. P.

Her breathing is easier thanks to the nebulizer treatments. Is that something that can be continued at home? Yes (hooray!)… She will be sent home with a pipe-like treatment that will break-down the mucus and allow her wind passage to remain more comfortably open.

Why don’t we do chemo and radiation simultaneously? The combination would be too toxic. Chemo is more of a systemic treatment while the radiation is more ‘local’ in nature. Radiation allows the treatment of specific areas that need more immediate focus (i.e. the brain lining).

How fast is the cancer moving? Why were the brain spots not noticed before now? Are they new? This is hard to answer. The February MRI – not done by Sloan – may or may not have shown the spots. What we know is that the Tuesday MRI (done at Sloan) showed them and the nausea is further evidence of their presence so we’re going to deal with them immediately. We also know that per the last aggregate reading that the cancer is ‘stable’ meaning that it’s grown in some areas and recessed in others so no net increase. And, we know from the bronchoscopy that there is no further tumor encroachment so that’s good.

What has been the experience of other patients who have gotten whole brain radiation therapy? Again it varies but generally the cancer is immediately responsive. Fatigue will be the most negative side-effect and that varies by patient.

When we get to the second round of chemo is that typically better or worse than the first? The second round is typically better because we both have insights on how the patient reacts based on the first round and the body is more ready for the chemo based on the first experience. These things combined often means a better experience. The key is to communicate what Janet is experiencing so they can address those reactions. Dr. Pietanza stressed she felt the communications to date had been good and appropriate and that Janet should continue conveying exactly how she’s feeling so they can mitigate what they can.

How long between the end of radiation and the start of chemo? Dr. P and Janet decided that a one week break between the 10 doses of radiation and round two of chemo felt like the right amount of time based on the last go around (where they only allowed her body a break of 5 days).

Why radiation for the brain spots vs. chemo? Often times chemo does not go to the brain (especially the lining). This got a bit technical and scary… The lining can block out a lot of crap – kind of seems like its key job… The chemo will not have the necessary immediate impact on the brain spots that are needed right now. Radiation is a more locally focused treatment that will target and certainly impact those spots.

As this all progresses will we have the benefit of knowing when we’re near the end? Yes, we will.

We’re not at that point? NO, we are NOT at that point!

“And, those who do best have a fighting spirit, which Janet has,” Dr. Pietanza. And so, the much anticipated meeting came to a close with a solid plan of attack in place. Dr. Pietanza gave Janet a huge hug and Janet told her, “I feel so solid with you. I feel like I’m in the best possible hands…”

The radiation team will do their brain mapping today so the first radiation treatment can be given and forward progress can resume. And, Janet will return home this evening (pending that mapping). She’s breathing easier, she’s more hopeful, and she’s ready for the radiation treatment. 

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Okay hi it's Sarah again.

So the update since then.  I just got off the phone with Clancy, who's been with Mom at the hospital all day.  She walked one-half loop today around the 14th floor hallway, and part of that unassisted, thankyouverymuch.  Clancy said her coughing was much less frequent today, except for occasions when she was "laughing too hard."  Heh go Janet!  Dr. Houseman, who is her new radiation oncologist, met with her to discuss the brain mapping, radiation plan, etc.  Because there are three spots in her brain, they are doing a "general" radiation.  As Ben mentioned, this is a good thing because it will knock out any little new ones that could be growing.  General is a misleading word though, because, as Clancy described it, they are very calculated and careful when it comes to radiation to the brain, so much so that a physicist is employed to determine the exact method, area, etc.  

Once the mapping is complete, Mom will go home at last.  She has some new meds to help her along, and Clancy created a new chart so we can keep track.  Mom said today: "It's a new world but we have excellent teachers."  I'd say that definitely sums up our experience with the medical team at Sloan - they're amazing, just amazing.

If you're planning on visiting Mom at home in the coming days, please call before you come, just to be sure that she's okay for visitors. We are doing our best to help her avoid exhaustion, but the love and support is greatly appreciated and serves as serious meat and drink for the Mama. Thanks all.

nice round head

Who knew she had such a lovely head?  Tonight, our good friend Susannah brought clippers to the hospital and we had a lovely time shorning Mom's head, much to her delight.  As you can see, she looks amaaaaaaazing.  Are any of us surprised?

The ceremonial head-buzzing happened just after she returned to her room post-bronchoscopy. She was in good spirits and ready for her dinner! Although the x-ray and CT scan had shown no stent issues and no new obstruction around her lung, Dr. Park (the same guy who inserted the stent) decided to do a bronchoscopy all the same after Mom complained of loud breathing, shortness of breath.  He ended up removing some build-up: mucuous and other lovely fluids in the area, but found that the stent was NOT obstructed and hadn't migrated whatsoever.  Her breathing has been very good today - much more quiet and peaceful.  

They wanted to do a "brain map" in preparation for possible radiation on her brain in the coming days, but because of the bronchoscopy, that has been bumped to tomorrow.  We're pretty certain she will go home tomorrow.  They're putting her on a new anti-nausea pill that dissolves in her mouth (smart!), and they've decided to amp up her steroids again: 6mg in the morning and 6mg at night.  The steroids will reduce the swelling in her brain, which is a result (as I understand it) of the new little spots found there.  

Clancy, Ben and I will all meet Dr. Pietanza with Mom tomorrow morning. Hopefully questions will be answered and we can move forward with a new plan.

more info

So Mom is out of Urgent Care and has settled into her room on the 14th floor. I saw Margaret, one of Mom's nurses from last week, and she was sad to see me, knowing it meant Mom was back in the hospital. Two doctors who are affiliates of Dr. Pietanza met with Mom, examined her, and told her they would take a look at the MRI results from earlier today. They came back a bit later and said that the MRI revealed several spots on her brain which they suspect indicate that the cancer (bastard) has metastasized once again. Someone from radiation will meet with Mom tomorrow - these docs said that radiation can be very successful on the brain so we'll see. When we saw Dr. Pietanza in the hall earlier (before Mom was in her room and before the other docs met with her), she said that the chemo question is a bit of a moot point right now since Mom is so weak, nauseous and unable to really walk very far. This is no time to assault her system with some cell-killing badass evil toxicity. Okay Pietanza didn't say that last part - that's just me. Clancy, Ben and I will meet with Dr. Pietanza on Thursday morning to ask her our current list of 8,000 questions about what's happening and what we should do. Hopefully we will have some solid answers later this week.

worse

They went to the hospital this morning, where she's getting fluids and just had an x-ray of her chest and abdomen. Dr. P. thinks the disease is spreading; they're going to do another MRI this afternoon.

quick update

So Mom's on her way back to the hospital - urgent care.  She had a rough night.  Clancy was with her all night and she had trouble keeping anything down, including meds, last night and this morning.  I talked to Pietanza this morning, who said that Mom should head back to urgent care so that they can give her meds and nourishment intravenously.  She will have another MRI later today.  Clancy's taking Mom to the hospital.  Sarah and the kids will meet Mom and Clancy there. More soon.