TRY A LITTLE TENDERNESS

"oh she may be weary
and young girls they do get weary
wearing that same old shabby dress
but when she gets weary
try a little tenderness"

oh Otis- how right you were. How much a little tenderness, a little love and a few soft words spoke so gently, can some how just make it all easier to bare.

Last saturday we left the hospital and came home. Sigh. It is always so good to get home after the hospital.

Mom is making progress everyday, and she is getting her life back slowly. We spent 18 days in the hospital. And we are all so much happier to be home.

Although Cedars is considerably better than St. Johns (where we were in april) a hospital is still a hospital and this one had it's own drawbacks. For one, our room was small- asses and elbows small. I have bruises on both legs from hitting the arms of this one fucking chair.... i hate that fucking chair. Also Cedars is in west hollywood, which, day after day is a schlep.

To tell you what life was like there- i will quote Dad. He wrote this there, and I think it explains it quite well:

I DON’T THINK MORE THAN A FEW MINUTES EVER GOES BY WHERE YOU AREN’T DOING SOMETHING- FEEDING , GIVING MEDS, COVERING UP- UNCOVERING- TURNING ON A SIDE , LAYING ON A BACK, DEALING WITH A NECK PAIN- DEALING WITH SORENESS THAT COULD BECOME A BED SORE IF NOT ATTENDED TO- GETTING A DRINK, MIXING A THICKENER IN SOMETHING TO DRINK, GETTING DRSSED, GETTING UNDRESSED, TAKING AN OUTING DOWN THE HALL OR DOWN TO THE PLAZA, MAKING SURE THE NURSE IS PAYING ATTENTION, TO MUCH LAXATIVE- TOO LITTLE LAXATIVE, FINDING THE FACE CREAM, GET A HUMIDIFIER EVEN IF ITS NOT ALLOWED, GETTING TO THE COMMODE, GETTING BACK IN BED, FINDING A NURSE, WATCHING THE THERAPISTS- OCCUPATIONAL, PHYSICAL AND SPEECH, FOLDING OUT AND DRESSING THE COT TO SPEND THE NIGHT, FOLDING UP THE COT AND BEDCLOTHES TO MAKE SOME ROOM, JUGGLING THE WHEELCHAIR, WALKER, IV, FLUFFING THE PILLOWS, ANSWERING THE EMAILS, ANSWERING THE PHONE, TALKING TO THE DOCTORS, READING THE GUIDELINES FOR THERAPY,GOING FOR ICE, ORDERING BREAKFAST, LUNCH AND DINNER FOR EVERYONE IN THE ROOM, ARRANGING WHAT NEEDS TO HAPPEN AT HOME , MAKING SURE THE DOG IS COVERED, SCHEDULING FRIENDS TO COME IN TO VISIT, DEALING WITH THE ODD PANIC ATTACK, GUIDING THRU THE OCCASIONAL COUGHING , SWALLOWING SPASM, WASHING UP IN THE EVENING AND THE MORNING, GETTING TEETH BRUSHED IN THE MORNING AND EVENING AND WHENEVER, RINSING WITH MOUTHWASH 3-4 TIMES A DAY, MARKING THE DAILY JOURNAL WITH PROGRESS REPORTS, FIXING THE FLOWERS, GETTING HOUSEKEEPING TO CLEAN UP, CHANGE THE SHEETS, MOP THE FLOOR ...... AND MAKING THE NECK COMFORTABLE....

It was, exhausting to say the least. Dad and I switched off sleeping there. He took two nights, I took one... Mom cannot stand or walk yet, and so every time she got up to use the bathroom, we had to get up and help her. And because her neck is still so fucking sore, anytime she changed positions, she needed help as well. And so, "sleeping" at the hospital, didn't really entail much sleeping. Dad and I were becoming zombies.

(The first thing we did when we got home was order a night nurse. We have had two nights of solid sleep and already everything seems easier.)

Mom made some really good progress in rehab, I think she would have made more- but we had a little setback... mom had a nightmare on a thursday night (the 9th) and it was bad enough that she talked to her doctor about it, and bad enough that she aggressed to see a psychiatrist about it. The shrink asked is she would like to take something to help her sleep- we agreed. So he gave her Ambien. 5 milligrams, which was WAY TOO MUCH for her. And after that night.. and continuing since, all the progress she had made with walking was wiped clean ,and now she has trouble simply standing.... it was as if the Ambien put her balance to sleep- and only now a week and half later it is only finally starting to wake up.

The real bummer about that was, that i feel like we lost precious time in the Rehab unit, because while her body was dealing with basically being drugged, she wasn't doing all she could in physical therapy, because her body was so unresponsive. And, anytime I tell a nurse or a doctor about that, they look at me stunned and say- he prescribed a stroke victim Ambien?!?!?! Tisk Tisk. Well, that doesn't do us a lot of good now... except to forge on.

Now one thing that she has been "practicing" three times and day (and then some) is her swallowing. Mom has a voracious appetite, and immediately after the stroke, chewing, swallowing were all a problem... now, while still eating soft foods, she is doing TONS better. Her voice is better, stronger, lower.... and thank god. Thank fucking god we can communicate with mom. Wow. She makes the odd joke, says cute things- like after spending the first hour with her night nurse sharon last night she announced "I like you Sharon"... it was pretty cute.

At this point I feel as though we have two major bridges to cross:

The first is swallowing liquids. (I think we are just a few weeks away from this goal). Right now she has to have all liquids thickened- which she hates. Cuz lets face it it's foul. When you want a nice refreshing sip of water and it's thick and slightly chalky tasting from the thickener... it's gross and not quite the same refrenshing sensation. So she isn't drinking very much, as you can imagine. But she used to not do liquid at all, now at least she has juice and some thicker liquids.... the progress is obvious.

However, until she is drinking normally, she has to have an IV at night. It is just saline, and it is just to keep her hydrated. But it's a pain in the ass, and it is the presence of hospital equipment in the house- which is grim... so we need to get her drinking water so we can get rid of the IV. Thats step number one.

Step number two, is quite literally, a step: walking... we have got to get her walking... until she can walk- we need a night nurse, she can't take herself to the bathroom, she needs CONSTANT supervision... until she is walking we can do nothing but practice all day. And we have our work cut out for us.... but we practice all the time. This afternoon we have our first at home physical therapy.... we will have a therapist come at least three times a week, and dad and I are looking into supplementing the insurance-sent doctor with our own therapist an additional 3 or 4 more days a week. At least for now...

As far as the cancer treatment is concerned- we will deal with that soon enough. We want to get her a little stronger before we do anything. But the plan is- on the 28th to do a full rescan and see where we are at. She is still taking her daily oral chemo- Tarceva, but for now there will be no big intravenous chemo. That shit was TOO HARD on her system, and, we think probably the cause of the stroke in the first place. She was taking something called Avastin, which most of the time does wonders, but can, in rare cases cause blood clots. We were one such case, and combine that with her getting super dehydrated- bang- that's when she had the stroke(s). So for now we are on hold, getting her stronger and better. Hoping that the Tarceva will continue to work and keep the cancer at bay... i have a theory that the Tarceva is gonna finish the job us. Mom had a dream some time ago that she was shaking hands with a bottle of Tarceva. Silly, I know, but Tarceva is her friend, and it's gonna kill this cancer and save my mom. I just feel it.

Aunt lois comes tomorrow. Which is great. And actually, Tate and I are going away this week- going up to Orcas Island in Washington State to a wedding. Then we come back for a week and leave again for two weeks- one week in upstate NY for another wedding, and then 6 days in Ireland. Obviously all these plans were made ages ago, and we talked about not going- but after some deliberation we have all decided that we should still go... so. Aunt Lois will be here that whole time we are gone- so Dad isn't doing all this alone- and Carter and Nikky help out on the weekends (actually Carter showed up every morning at 8am in the hospital to bring coffee and croissant to dad or I while we were at the hospital.... a serious trooper)... And then, if we need more nursing help, we'll just -get it.

But it's hard man. This is some serious shit.

Mom had a stroke. And that shit takes a long long time to recover from. Walking, talking, swallowing, dressing- she has to relearn all of it. And she gets tired, and her neck hurts and it's sometimes so overwhelming.

Sometimes you just want to stay in bed- but you can't- it's not an option. Much like a new parent, sometimes you just want to go back to your old life and stay out late and sleep in, and relax and unwind- but there is a child to consider and there is more love than you have ever known, so you wake up and you feed, and clean, and take for walks and teach the world to your child....

and thats kinda what we are doing.

Mimi Wheeler and Santiago Ortiz (Laura Donnelly's daughter and son in law) had a baby last week! A perfect little man named Felix Claudio Ortiz. He was born on the third floor while my mom was up on the seventh. And yesterday they brought him to the house so mom could finally meet him. (and, as I am the god mother I needed to get my mitts on him too). They had seen her in the hospital. And then a week later they came to the house. They could see an improvement. "Much better" they said. I guess I don't see it as much cuz I am here everyday.

But it's true- she is much better. She feeds herself. (didn't use too). She stands while she brushes her teeth and washes her face (couldn't do that before). She drinks juice, like tomato and prune (no way could have handled that before). She smiles and makes jokes (something she definitely wasn't doing two weeks ago).

And so we try. We try being funny, and stern, (she calls me a drill sergeant cuz I make her do exercises and stand and walk and all that), and we try kindness,and softness, and patience and even, even a little tenderness.

And somehow- being tender... it just, makes it easier to bear. Because we are all weary, and we are all waiting, anticipating the return.... the return of mom- to us all.

And she's coming back. Bit by bit. She comes home a little more- everyday.


So, you all- you big ol' extended team. As always, thank you for your love, support, thoughts and prayers

we remain, ever patient, and a little tender

and always

Team Carter

REHAB

When they say rehabilitation- they really mean rehabilitation.

Mom is starting completely over. Well, not completely. She can think, and use her words. And she can smell. But thats about all that is intact. The rest is starting over. Sight, sound, touch and even taste... all need rehab.

This week mom is learning how to walk, talk, feed herself, groom herself, take herself to the bathroom, shower.... It is, overwhelming to say the least. Especially when all of us were in a place where we thought we were seeing a light at the end of the tunnel. And now it feels like the tunnel has collapsed, and we are picking pieces of dirt, one at a time....

But there is progress. When we got here last week she couldn't stand on her own, or use a walker, or find her mouth with a raspberry. Now she is feeding herself with a spoon (last night we had the fork AND knife in action). She walks down the hall with a walker and a physical therapist... she sits and washes herself off in the seated shower. She brushes her hair and her teeth and washed her face and her hands at the sink.

It's just fucking slow. It's pull your hair out slow. They gave us a going home date- The 18th of August. That is one week from today. And while I've seen how much they have helped her this week, and am so looking forward to seeing all she can conquer next week, the fact remains that she has A LONG WAY TO GO. A long way to go just to get to where we were. That frail exhausted weak cancer patient. Hard to believe- but right now- even that seems good. At least then she could walk. SO in some ways next saturday seems too soon, on the other hand another week in the hospital feels like an eternity.

Her speech and her eyes have probably improved the most- when she looks at you her eyes stay mostly strait, and her speech is not nearly as slurred or high pitched... at times she sounds downright normal.

Dad and I thought that the hospital would be easier. That here she would have 24 hour care and we could get a break. But in fact it is much much harder here. One, because one of us is here all the time. She is just too frail to be left alone- and two, the hospital is a scary place, especially at night. So dad and I switch off, he takes two nights I take one... and that way she is never alone. So that is extra exhausting on us too. At a time when we were so desperate for a break, everything just got so. much. harder.

But the therapy is great- and we look forward to it everyday- we have an hour (or 2- depending on the day) of physical therapy- which is walking with a walker mostly, some basic exercise and they usually end with a neck rub. Then we have Occupational therapy for an hour or two. We had the BEST therapist Erin (hi Erin, she joined the mailing list). But she left last Thursday to go back to school, and it's not the same without her. She was super fun, and very good at her job, and made therapy fun. The new girl is ok, not nearly as fun. Erin played yatzee with us (and mom beat both of by the way... asshole). Then we have speech therapy- we practice talking, breathing, swallowing. Next week we will start some group stuff, a stoke class, and a community class (whatever that means).

Also next week she is going to get a botox injection in her neck. They say it will take a few weeks to really take effect- but it should, hopefully give her neck some much needed relief. And what a bitch that is- in the middle of having to learn how to walk and sit up and lay down and all that shit- her fucking neck still hurts.... what a mother fucker.

Oh man, poor mom. When it rains it pours.... the thing is- because her mind and memory is all there- she totally realizes how much this sucks. She says things like, I just want to be normal again. I just want to go back to being a normal cancer patient.... jesus.

But she is a trooper, and I KNOW way down deep where it counts, that this story has a happy ending, that one day she will be hiking up Grizzly Creek, and thinking- man- that was a weird fucking year. And she will be healthy and happy and retired and Dick will be driving her crazy and joey will be by her side.

Cuz that is how this story is SUPPOSED to go. And if we all WILL it that way- that's how it WILL be. But jesus man is there a lot of work to be done.

so wear your bracelets, and keep in touch. She loves to hear from you all.

thank you endlessly for your ongoing support.

Until Next time,

as always

we remain,

Team Carter

UPDATE

hello everyone,

Well well, its a good thing I told you all to email us instead of call. We got almost 50 emails within the first 5 hours... you all are amazing. Mom and I spent a long time last night before bed in the hospital reading them all. I can't tell you what a difference it makes to her. And, it may have been crooked, but she smiled.

I have good news- (thank fuck) so let me just get right to it. In addition to really encouraging improvements already (much less slurring, eyes coming into focus, standing with a walker... improved coordination... all of it). She wowed all doctors and she has been approved (both by the doctors AND the insurance) to move upstairs on monday to the Cedar Sinai Inpatient Rehabilitation Unit.

This is one of those places that has amazing results, and as such, a stellar reputation. it's won all sorts of awards... They only have 28 beds and therapy starts at 7am and finishes at 7pm (not solid- but it is all day long)... They don't admit people they don't think they can help (and I guess I don't blame them, it's how you get a good reputation by maintaining excellence). They took one look at mom, and her determination ("I just wanna be normal again"), her tenacity ("I'm ready to go home now") and her attitude ('do you know who the president is claudette?' - "yea bush, unfortunately").

They took one look at us by her side- unwaveringly... and they said they wanted her to invite her upstairs. Stating that people that WANT to get better and people who have family by their side have a much better chance of improving.... and well, I guess thats us. Because we're gonna kick the shit out of this.

So even though we are only going 3 floors up, we will be checking out of the hospital and checking into the rehab center. It is a completely separate facility- but still has 24 hour nurse care and all her doctors can still include her in their rounds. I feel like the Jefferson's- cuz we're movin' on up, to our very own deluxe apartment in the sky...

Its really excellent news- one, because I feel so confident in the care, and two, because they are confident in moms ability to improve- which brings us such relief, I cannot tell you.

The basic deal is, Sunday evening or Monday sometime we will get moved up there and the regime will begin. She is expected to stay there for two or three weeks. She will have intensive therapy for at least 4 or 5 hours daily. Everything from physical therapy (walking, sitting etc) to occupational therapy (brushing teeth, changing clothes, feeding yourself), speech therapy (basically attempting not to sound like she's had a bottle of gin when she talks). They will also work with her to improve her vision and her hearing as well.

I'm sorry- I just have to say. I just can't fucking believe this.

I can't believe I just wrote that- I can't believe mom needs to learn how to dress herself, change her clothes, talk, hear, see. It blows my mind that this could happen. In an instant. Just like that, right in front of me. What a gift it is to be healthy, to even just brush your hair and complain about your fat ass. What a gift.

Fucking wild.

Anyway...

So we'll do the therapy, and after a few weeks we hopefully come home. And we see where we are at. We may get some at-home help, we're not sure. Kinda a day by day deal right now.

so thats all. I just wanted to share that with you because the last email was a bit of a bowling ball in the nuts.

I know it is hard to swallow- but it WILL BE OK.

Cuz it has to be. Mom has never done anything half ass, or medioocre. You don't seriously expect her to start now do you?

Comeon, seriously.

lots of love,

until next time-

surviving like a raging river

we remain

Team Carter

TOUGH NEWS

Well, I so wish I had better news to report. But in fact I have some pretty bad news. So, if your not already, sit down.

Two days ago, on a wednesday afternoon around 2pm, right in front of me, Mom had a stroke. In fact- she had two. One is quite small, at the base of her brain stem in an area of the brain called the "pons" and the other is a bit larger in an area called the Cerebellum. A stoke- for those of you that don't know- as I did not until yesterday afternoon, is when an area of the brain does not get enough blood and it damages the tissue... this can cause several side effects. Mom was quite dehydrated from some vomiting and diarrhea over the past couple of days, and as a result of her chemo treatment the doctor thinks her blood was "sticky" (thats actually the term he used- "sticky blood" its a extremely medical term)... and he thinks that the sticky blood and the dehydration caused a small blockage, and ultimately a stoke.

Before I go on, I need you to know it was a minor stroke, and the doctors do expect a full recovery in time. How long- well, that is the question at this point. Lets just say cancer treatment is on the back burner for a little while.

So, what happened. In short- she took two pain killers accidentally the night before. Normally she takes one, she took two. Not one single doctor thinks this is the cause of the stroke, but I know that it played part in furthering her dehydration, Because when she woke up on wed she was unusually groggy. Now, dad and i figured it was the double dose of pain killers and assumed she would sleep it off. Also she threw up a few times this week, (a first for us in our experience with chemo). And she was having diarrhea, so she was really really dehydrated to start. She ate a good dinner on tuesday night and I was expecting a good day on wed. But when she couldn't come out of the drug haze she was in- I couldn't get her to eat or drink, and anything she did get down she threw up. So I went across the st to get some pedialight (children's electro-light drink) and some may-lox to calm her stomach.

She hated the pedilight, but took a small sip of the may-lox and about 1 minute later said, "I feel drugged, ooh I feel weird" I sat with her, thinking this too would pass, and then something changed. Her face went slack, she told me she couldn't hear anything, she said her arms were tingling, and that her whole right side of the body was numb, and that now it was really loud... her speech was slurred as she asked me "what was that banging?"

Obviously I called 911, and dad who had gone for a meeting a few blocks away (he and I thought we might go back to work this week). He just stood up in the middle of the meeting, said, "I have to go" and walked out. (i love that image...)

Now then. It was pretty apparent that something was very wrong when I got her to the ER. (by the way- ride to Cedars from Santa Monica on a wed afternoon at 2:30 in crazy traffic in the ambulance.... passing all the cars- highlight of the year for me, seriously awesome... you got to get your thrills where you can these days).

The first hour is the ER was understandably scary, in my experience ER's involve long waits, no time with doctors sitting in uncomfortable waiting rooms. Not this time. We got in a room immediately and there was a cacophony of activity, doctors, nurses, chest Xray in the first 5 minutes, the ER doctor talking to me in the first 10, she was whisked off to get a cat scan of the brain... "could be a brain tumor, "could be hemorrhaging in the brain, "does she have a living will? "Who has power of attorney?" And classically, our Oncologist at Cedars is out of the country for two weeks. So they sent us the guy who was covering his case- an absolute sweet heart who came and SAT WITH US, no joke, FOR AN HOUR in the ER. I have never seen anything like it in all my life. He explained what was happening, what our options were depending on what we find on the cat scan, and then waited with us to get the cat scan results. It was UNBELIEVABLE. Its why Cedars has the reputation it does... cus the doctors and staff there are the best in the country. (apologies to all our friends that are doctors who are reading this- your real good too...)

So then the cat scan comes back, and there is nothing there. Oh my god. No tumor, no hemorrhaging, no stroke.

So they admit us, because something is definitely wrong. Mom is still numb on one side of the body, she has body tremors (like when you have Parkinson's), her eyes cannot focus on one thing and she has double vision, she can't really move herself around too well, and the banging noise in her head is still really loud.

Our neurologist (a man I was planning on making an appointment with anyway to help work on her neck at the end of chemo) Dr Cohen, came in and after evaluating her, suspected she in fact DID have a stoke- albeit a minor one. We did the MRI on Thursday and it confirmed what he believed, and told him something he wasn't expecting.

The numbness, the wobbly-unfocused eyes, the slack face, the slurred speech - that was all due to the stroke in the Pons, but the much larger one in the Cerebellum, which could have presented a lot more conditions, and had not, was only giving her the tremors, and that would mean we would have to work on her balance, as that is the area of the brain that that effects.

Dr Cohen was very confident that she would get better, that all these symptoms could be solved with Rehab.

And so that brings us to today. Mom will be undergoing major rehab over the next few weeks (months? we don't know). And where and how we get it is what is next to figure out. There are several options: At cedars, just upstairs from our room lies one of the best Rehab centers in the world that has a year long waiting list- we can bypass that list and get checked in if she is deemed strong enough to be a candidate. Then there is the option that we go home and rehab comes to us, and finally there is the one where we go home and go to rehab. Obviously I'd love to stay in hospital for a week or two and then go home... but we will just see what happens.

We are expecting that the a team of rehabbers will descend on us today- from swallowing, to optometry, to occupational, to speech.

And in the middle of all of this mess is my mom. Who is still all there. She can talk, she can cover one eye and see me, she says, "is dad crying? go give him a kiss" she says- "all i have to do is physical therapy? Well shit, I CAN DO THAT. I've been wanting to do that, lets start now"

I don't know from where it comes, but her inner strength, and her positivity are more alive then ever right now. It actually inspiring. There she lies, unable to feed herself, or take herself to the bathroom and she is telling me things like "make sure to tell Judi (a friend with a newborn) that Carter was colicky, and it's hard, my heart goes out to her, but tell her to use the magic position I showed her... it will work". And I think- how the hell can you still be so present and generous and wise from this hospital bed. But she is.... And she says, "Are you gonna write an email? Oh i wish you didn't have to tell everyone bad news..."

In fact, the first thing she said to me when we got in our room was, "Draw the room Chase, I want to see where I am... what's behind me"

And even tough its just a wall behind her, and even though I think she should be looking ahead and not behind, I draw the map, and we hold her hand, and we feed her anything she wants (she DOES have her appetite back which is great) and we talk to her, and we call her one-eyed-willy and tell her take up golf cuz she's got one hell of a stroke... and she smiles and tells us its OK. That she, is OK.

I mean, she's a mess. But she's ok.

So I don't know where that leaves us. I mean. Ok, so it was a mild stroke. But a stroke is still a stroke and it is incredible scary and so so jarring to watch. I look at her now and wonder how is it possible that you could EVER be normal again, but you can see in her eyes that she will, and she can, and it's fucking wild.

its just wild.

But there IS improvement- already. Her voice is stronger, her hands are steadier, her eyes are more focused.... if her speech is any indication of her speed of recovery- then we are in good shape. She is visibly better than when we brought her in two days ago... and that is everything that we are hanging onto now. That is the definition of hope. And it's such an amazing thing to witness and be a part of... what a ride.

So this is a set back to be sure, and unfair one, and unwelcome one and a totally BRUTAL one. But thats why we are a team... and that's why it takes all of us. So muster up that mojo. Send ye light, love prayers, gongs, whatever you got. And for those that have bracelets- PUT EM ON. And for those of you that don't... I will get them to you- they are in the mail....

And, I would also like to add, if you would like to talk to us, for right now please just email. That is probably the most efficient way to reach us at this time. I will keep you updated at every turn. And will do everything to keep you all in the loop.

Team Carter will Survive.

Every single Day.

So thank you for all the continued support. The fight just got harder- but what the fuck... ain't worth doing if it doesn't take all you got...

SO.

Lots of love

And, as always,

until next time,

we will remain

Team Carter