Fogs in...

I can see the thought bubble above your head: "huh?"
This title has nothing to do with Margie, other than the fact that she loves San Francisco, and I live here, and the fogs in...
It's the last two days of June and the fog is thick as soup. Brrrr. Come september and October: glorious.
Yes, I know you've read this a hundred times, but the oft quoted Mark Twain said it best:
"The coldest winter I ever spent, was a summer in San Francisco" He couldn't be more right.

Back to Margie-
She's still in a bit of a holding pattern due to her numbers not yet being up, but still moving on with yet more new procedures:
Next week she starts 12 days (not including weekends) of cranial/spinal radiation. We talked about radiation for a few minutes, and as all electricity, even a light bulb emits some amount of radiation, I likened it to harnessing a lightening bolt (if you want to think about the comparisons, light bulbs, microwave ovens,etc) So, this goes on each of the twelve days for a few minutes.
And that is to further eradicate the leukemia cells from her brain and spine.

Last bone marrow biopsy results haven't come back completely yet, as the cells are too immature, so still waiting for more conclusive information. She's got another biopsy scheduled tentatively- (the blood numbers have to be higher) and after that, maybe get that ol' transplant scheduled again.

Day to day, she's at the Hutch to get her blood drawn and info on where the numbers are, sometimes receiving product. Today going in this afternoon just for that reason.

She's up to about 12 city blocks walking daily again and trying to add more length to get stronger. As her numbers climb, so will the strength in her body.

All for now. Margie tells me she's sent along in the mail a few "jottings" that I can transcribe to the blog, so you can look forward to her words instead of mine. Will post them as soon as they arrive.

Love, Kathleen

More waiting...

Margie and Robert are back at the apartment as she waits for her numbers to continue coming up.
This is a process, as it's slow and she won't be in "pre-transplant" status until her numbers are up to where they need to be.
Tuesday (tomorrow) she's tentatively scheduled for a bone marrow biopsy, and then another tentative proceedure of
cranial and spinal raditation once the numbers are up.

So, as of sunday, Margies white cells wer up to 300, the nutriphyl (spelling?) is at 120 and she's still going in daily for platelet transfusions. The platelets won't replenish themselves without the white cells also climbing so she has to be supported with platelets during this waiting time.

I've mentioned before that you and I walk around with over 100k of platelets and she gets down to about 9 thousand regulary.
Several times now in the last few days since being back to the apartment, when she's gone into get her transfusion, she has to go in by wheelchair because there's just nothing left.

Margie's doing well with the protein intake and is taking in a required 70 plus grams a day. She said that food is tasting better and it's not quite an issue eating as it was with the mouth sores. Her weight at the hospital went up due to the edema and all the drugs and fluids, but now she's on about 5 different drugs a day, the edema's gone and the extra weights gone, so as we know, spirits are up if the weights down! (I was telling Cathy recently that it's amazing what a difference five pounds can make on us "petite flowers")

She's getting better sleep at the apartment as one might imagine and is only waking a couple times during the night. I sure hear it in her voice- she sounds rested and clear again.
Not possible to get in the miles that she was at the hospital pre and during chemo. Now that she's got very little blood product in her, she can barely get to the hospital bed to get her platelet transfusions, so the marathons will have to wait for now.

All for now, dears-
Kathleen

There's no place like... the apartment

That's right, Margie's checking out of the hospital this afternoon- back to the apartment and onto being a
Pre-Transplant patient!!!
Her white counts are still creeping up, and yesterday's bone marrow biopsy preliminary results have come back good,
so she and Robert are busy packing their bags and back to the apartment where Margie will hopefully get a full nights sleep!

Then, back to the Hutch tomorrow!

Way to go Margie!

Love, Kathleen

My Beautiful Mother

My Beautiful Mother

Well, the photos are in folks, and Leukemia and the side effects of drugs are pretty gnarly.
Margie wants me to put these on the blog, so I am. All I can say is, my mother is the most beautiful woman I've ever known in my life...and these pictures show her grace.

Love, Kathleen

summa time, and the livin' is eee-zee...

I am taking my second ever commercial airplane ride in July to Washington to see my family. My granddaughter is going to escort me up there and back home, and she has extra bonus air miles, so we get to fly first class. I think I'm looking forward to it. Will let you know how it goes.

Love to Margie and Bob. They're in my prayers.

Lorraine P

------------------------------------------Hi Kate!
I just got myself caught up on the blog. I am sooooo thrilled that the
Leukemia is gone!
Although it sound as though it's been a terribly difficult road to this
point, she is getting to where she needs to be. That is great!!!

Hi Margie,

Our summer plans look something like this... Dylan (who is now 5 1/2 if you
can believe it!) finished preschool at the JCC on Thursday. They had a
lovely little "moving on" ceremony, just like they did with Parker's class,
I'm sure, and Dylan was full of pride when he received his "diploma". So he
is technically on vacation at this very moment. I, however, am not! I am too
busy trying to appease Ben, who is 8 1/2, and obsessed and deeply perturbed
by the fact that he still has two more days of school left before summer
vacation begins! He, much to his chagrin and dismay, is not "free" until
Tuesday at 2pm (at which time I officially begin my latest trial by fire; 10
weeks straight with my children! Terrifying but I'm sure I'm up for the
challenge!

Recently Kate and I were talking about how she and her brothers and sister
were shipped off to relatives for weeks at a time during the summers when
she was a kid. Now I can see why! Where do we sign up? Just kidding... I am
actually looking forward to the little adventures I have planned for the
boys and myself this summer.

We are spending the remainder of June at home with few concrete plans. My
first cousin and his wife and kids are coming for a visit. Ben will do a
little 2-hour-per-day tennis camp in Golden Gate Park for one week. Most
notably, however, is the fact that in less than two weeks I will be
celebrating my 40th birthday! I don't know whether to cry or rejoice so I'm
doing both! Planning a b-day bash for myself with the help of my dear
friends, contemplating Botox and the hiring of a male escort to attend my
party with me (just kidding) and concocting subtle and not so subtle ways to
tell my family what I'd like for my birthday! After all, I've got to milk it
for all it's worth! My mom, dad, and step-mom will be making their ways West
to celebrate with me. I am so thrilled that they are coming! Kate doesn't
actually believe I have parents since she's never met them yet. This will be
my chance to prove they really exist!

In July we will be in NYC and the surrounding countryside for three weeks
visiting my family. We will move back and forth between my mom's tiny-tiny
apartment on the Upper West Side of Manhattan and my dad's little country
house in Saugerties, NY. In NYC we will see friends, play with my little
nieces in the playgrounds where my sister and I played as children, and eat
pizza and soft ice cream from the Mr. Softy trucks parked throughout the
city. In the country we will swim in the creek surrounding the house, hike,
torture insects, get dirty and generally do "boy-style" country activities.
I'm still learning what those activites are, but you get my drift.

In August we go to Yosemite for 1 week. There is a family camp there called
Camp Mather, and this will be our third trip up there. We stay in a
bare-bones cabin with nothing but a light bulb and two beds. The great thing
is that I don't have to cook for the whole week! The food is served
cafeteria style, and it is really tasty! There is a beautiful lake for
swimming, a pool, tennis courts, great hiking, horseback riding and plenty
of camp-like activities. At night they do marshmallow roasts, sing-alongs
etc. Lots and lots of fun. Oh, and the kids ride their bikes everywhere
which they love.

Once we get back we have two weeks at home before school begins again. We
will just lay low, relax and enjoy sleeping in for a few more days until
school starts.

Sounds like a great summer right? I certainly hope the boys enjoy it. I am
trying to treasure my time with them... They seem to be growing up sooo
fast!

Margie, I want you to know that I think about you every day. I am sending
you all my love and good wishes and strength and hope for your continued
recovery. You are amazing!!!! I am so inspired by your strength and grace
and beauty!

Love,
Lara
-----------------------------------------------------------
Hi, this is RachelAs of today i am waiting for russ to get home within six days and we might go to abbys wedding this summer.
take care, rachel.

------------------------------------------------------------

kathleen,
Well, we are celebrating Sarah'sgraduation from college this weekend. Way to go Sarah! There is also the 4th of July where Michelle & I will be dressed as Raggedy Ann & Andy (those happen to be our two middle names by the way) and with my accordion, will be marching in our annual 4th of July neighborhood parade. Also, with Hilary making the cheerleading squad, she'll be having practices two days a week this summer, which includes tumbling workouts. Jeff has moved back home after a year of being out in the real world (reality check $$). He just completed his 1st year at the local community college and is working full time at Rite-Aid this summer. Where will I be? Oh yeah, I'll be working. I do look forward to the weekends when I can play my accordion and entertain the patrons at Nonna Emilia's Ristorante Italiano. I am taking one week of in late July and maybe go to the beach and do a little camping, just to get away and relax.
Well, that's about it. Nothing too exciting. I wish I could say I was touring Europe this summer, but I guess I can pretend that I am in Italy on weekends while playing "That's Amore'.

Love You.
-Joe
-------------------------------------------------------------


Richard and I will probably be working all summer, but we are going out to
Ocean shores here on the Washington Coast for 5 days when he gets home from
the ship he is on now. It's our 20th anniversary June 14th so it's an
anniversary trip. He may stay in town and work for Arrow Launch for the
summer. I'm hoping we get to take a trip to Victoria sometime this summer
also. My niece and her family will be coming to visit us from Catalina in
July for about 5 days too. I'm excited to see them! OH YES!! And the best
news of all...Jade and Luke are expecting a baby in January! We should have
a full summer!

Take care now!

Debbi

------------------------------------------------------------

Randy and the boys and I will be doing our annual trip to Mexico in July-
besides that, Parker has science camp for two weeks, Randy goes to San Diego for
a friends retirement party and then in August, I'll be coming up there with the boys.
Love,
Kathleen

-------------------------------------------------------------


So, thank you everyone that contributed, I know that Margie loves to hear about what everyone is doing-

Happy Fathers Day!

Happy father's day to all of you dads out there-

But, this site is about Margie.
Onward:

As of this morning, her white blood cells are at 200. ( those dang whites are not moving particulary speedy, are they?) However, Margie has a bone marrow biopsy scheduled for tuesday and she was hoping that she'd have the p.a. at the university hospital that does a really great job, so... wish granted!

Had a pretty good nights sleep last nite: she said she got a rare 4 hour stretch, so good for her!

Carol, Mike, Deborah and Robert were over yesterday for about an hour, and sounds like she really enjoyed their visit- Carol, Mike and Deborah went on to do a little bit of tooling around Seattle and sounds like they had a nice day.

Congratulations on her graduation today, Sarah! And to Joe and Michelle !

Will begin our "summer plans" post later today, if you've still yet to add to our list, ( and you know who you are) feel free to email me- kers@att.net

Love, Kathleen

The white blood cells are coming!

Yesterday, on day 26 ( from her start of chemo) when I spoke with Margie, she had yet to start producing white blood cells and I learned that a person cannot get an infusion of white's like you can with reds or platelets. So, here she was at day 26 post chemo and had not replaced any of the wiped out white blood cells ( white are the ones that are key to the immune system- if you don't have them, you don't leave the hospital)
You or I walk around with about 3500 white blood cells.
She has to have 500 to leave the hospital and with this mornings blood draw, she's at 100. Way to go!

Other than that, a few bullet points on things that are happening:
- her rash is still present, tho she feels it's on its way out. Getting itchy-er tho- Taking benedryl for it to relieve some of the itch.
She decribed the look of the rash as Measels times 3. Ewww. Robert is sending me a c.d. with pictures, so I'll be posting them likely on the weekend.

-Mouth sores still present and continuing with a smoothy a day- otherwise she's on solids and the Big D is gone- Thank the big G!

-Next tuesday will be another bone marrow biopsy

-She's on one antibiotic now, down from 2

-Doesn't have a fever

-Sleep is still a huge challenge- only 1 to 2 hours at a time, what with her condition and the constant monitoring, there's medical personell in and out of her room virtually round the clock. She's figured out that by taking a "late" breakfast tray, she can sleep from about 6 to 9 , a three hour stretch which is now the longest she gets to sleep.

That's what I've got for an update for now. The key bit here being that her white blood cells have come up to 100!!

Way to go Margie! You're the bomb! (I know that that's a good thing, although I'm not sure what it means!)

Love, Kathleen

p.s. IT'S NOT TO LATE TO EMAIL ME YOUR SUMMER PLANS-
KERS@ATT.NET
THANK YOU TO ALL OF YOU THAT HAVE EMAILED ME ALREADY!

waiting, waiting

This mornings report: Overall, good.
Assorted information in no particular order-

-Margie's numbers still haven't come up: she said they "went into retreat" after the chemo, which is apparantly normal, but in the meantime, she's supported by blood infusions and the p.a. says that they should start seeing the numbers come up in the next couple of days.

-She has a rash all over her chest, face and shoulders, luckily not itchy, due to a side effect of the two antibiotics she's on.
Of course, rashes always tend to be a bit of a mystery and then one has to do some detective work to correct the problem, so they are going to change her antibiotics today and hopefully see an improvement.

-She has a bit of swelling at the site of her hickman which the p.a. says is part of the rash, but Margie noted that it did not come with the rash, so we shall see.

-Eating and sleeping are some big issues right now. Thinking about, looking at and faced with the task of eating makes her naseated. She's occasionally trying a med to offset this side effect, but overall the appetite is shot. The mouth sores are less of an issue.

-Sleeping: This is harsh- only about 1 to 2 hours at a time. So, as a sample, last night:
9 to 10 pm, sleep, up till 1. sleep from 1-3, up. Sleep from 4-5. Up. Sleep from 7-9. Up.
Those little blocks of 1 to 2 are hard and she's up and down constantly, what with the interruptions of the medical staff, obviously neccessary. So, she's getting the sleep anywhere she can.
She commented to me this week that she is the most exhausted this week than any other time during this hospital stay.
So, no visitors due to her immune system being compromised but sounds like a good thing so that any time alone she can try and sleep.

-Trying to clock 1 to 2 miles a day around the nurses station, so that's good and it's what her body has to have

-She discovered a smoothy type concoction that he kitchen makes that has 19g. protein and most importantly is cold, which seems to help to get it down and not so nauseating to drink.

So, there's the latest report: All in all, positive. Margies slugging it out and is just the tough cookie to get through-

Love,
Kathleen

p.s. THANK YOU to those of you that have emailed me with their summer plans (see previous post for more info if you missed it) It's not too late, email me at KERS@ATT.NET and let me know what you and yours are going to be doing over the summer and I'll compile them on the blog for Margie. She'll love to read about what her friends and family are doing!

THE BEST NEWS!!!

Great news!
Yesterday's bone marrow biopsy has come back CLEAR!!.
Just spoke with Margie and Robert and she sounds really great- her voice sounds strong, rested and ready for a transplant.

Once her numbers (red blood, white blood, platelet, and hematacrit) come back up to the numbers that she needs to leave the U, then she'll be back at the Hutch so with a new protocol as a Pre-Transplant patient!

Way to go mom!!!

She's clocking about 2 miles a day around the nurses station and reported that yesterday she lost virtually all of her hair whilst she was showering- good thing she's got that wardrobe of hair to put on the nut!

What wonderful news! I practically ran to the computer to share this with her family and friends!

ok, I lied

I said I wouldn't be posting, and here I am. five minutes later. I know.

I noticed the date on the blog: June 1st! Around these parts and by that I mean in our house, that marks a big occassion because it's the beginning of the summer season and the count down for our summer trip.

I WOULD LOVE IT, AND SO WOULD MARGIE

if anyone reading this blog would email me with what they're plans (them, their family etc) are for the summer.
Vacation, a trip? camp? nothing? school? a special adventure? visiting friends? RV trip, where?

Email me at

kers@att.net

and I'll compile and share FOR MARGIE on the blog. I KNOW SHE'D LOVE TO READ ABOUT WHAT EVERYONE IS DOING!

so do it.
Now.

baa baa black sheep, have you any wool?

Yes sir, yes sir, six bags full...

Ok, I'm the mother of a toddler and that's a line from a nursery rhyme.

Well, Margie's got SIX (or more) i.v. bags hanging and hooked up to her right now. Dad! take a picture of that one!

I don't have a lot of the particulars but we know she's hooked up to potassium, vancomyacyn, blood product and various and sundry fluids.

Here's a report of pretty much miscellaneous of the past couple of days, in no particular order:
-on and off Big D, though much improved (yay!)
-plenty of fluid output due to the lasix to relieve the edema (sometimes too much as she's in the head all night!)
-the dreaded mouth sores. Eating activity starts with medication for her mouth so that she can swallow anything with less pain.
-some heart irregularities so they are watching her on and off with a cardiac monitor
-watching lung activity: since she had a problem a few days ago. 2 litres of Oxygen (according to my notes-don't know when)
-has tested positive for grand positive cockxy ( I don't know what that is, nor can I spell it!) but it's a bacteria. sounds creepy
-nausea when faced with eating/food activity (sounds like food is pretty much a nightmare right now)
-getting all blood product right now due to her numbers being expectedly down from the chemo.
-In three days she'll get a biopsy: this'll be a big one to determine remission
-told Cathy this morning that all these symtoms could get worse/more in the next few days.

two steps forward....one step back.

Her numbers are bottomed out right now, so no visitors. Besides dad, can't risk introducing some germ into her environment.

Big kudos Margie: She is literally doing circles around the nurses on the floor. By that I mean that she walks circles around the nurses station every day, yesterday reporting that she clocked a mile and a half!! One of the nurses told her what a great job she's doing with the walking and staying active. the nurse said they have to sometimes "drag patients asses out of bed"
to get them moving, it's SOOOO vital to recovery. Our bodies have to MOVE!

Way to go Marathon Mom!
Margie has an incredibly, powerfully positive outlook and attitude. She know that without a doubt this is the way through this to the otherside and onto the next part of her life. It's a real honor to be able to listen to her on the phone and I'm so struck by all that stuff of which she's made! Pure Grace.

I've got an art show this weekend in which I'll be selling ALL of the paintings that I'll have there (actively practicing the power of positive thinking, lest you think I'm that self absorbed!) , so I'll be off the posting for a couple of days unless there's something that needs to be reported. Maybe Cathy or Margie will blog...

Shameless self promotion section:
you can see my work at : http://www.katesalenfriend.com

Have a wonderful weekend and especially Margie,
Love
Kathleen

p.s. I've been typing up some poetry for Parker's 3rd grade class this week for an end of year project and one of the girls poems was just beautiful. There was one particular line in which the imagery just took my breath away. Her name is Laura:



"My heart is knowing
How to dream of
Dancing roses"