last night, this morning

must report on my phone conversation from last night with Margie since there was much positive, and then I'll bring you up to speed on this morning:
Her day yesterday was much better: The D seems to be slowing down, she was finally given Lasix to combat the edema and speculated that she'd gotten rid of about 1500 cc's. Yay!
she was still in the temperature zone and still on vancomyocin (spelling?) her diet still (last 3-4 days) has been clear:
red jello and chicken broth. She's gotten some mouth sores, but doesn't feel like she's too bothered by them.
So, all in all a better day.

So, this mornings report:
Last night heart irregularities so they did an ekg and then turned out that she her heart "calmed" down without any intervention. They started her on an oral med as a preventative and now she's on a cardiac monitor.
No more D last night, luckily since she had her "swat team" in the room tending to her heart.
Temp is finally down to 37c.

Margie's enjoying the staff at the U hospital, she's been writing short stories which I will transcribe here at some point.


So, yesterday's post included Haiku, which I realize now that not everyone may be aware of what it is.
Well, if you know, skip this section.
Haiku is a poetic form and a type of poetry from the Japanese culture. Haiku (pronounced High-koo) combines form, content, and language in a meaningful, yet compact form. The most common form for Haiku is three short lines. The first line containing 5 syllables, the second line 7 syllables and the third line containing 5 syllables. Haiku doesn't rhyme. A Haiku must "paint" a mental image in the readers mind. This is the challenge of Haiku- to put the poem's meaning and imagery in the reader's mind in only 17 syllables over just three lines of poetry.

So in that spirit, here's a couple I wrote for Margie:

My all day menu,
A culinary delight.
Jello, chicken broth.

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

To the hospital:
Cards, photos and well wishes.
Mail lost forever.

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

Love, Kathleen

and it goes on...

the diarrhea that is.
Yep, I can see your thought bubbles over your heads, "why is she writing this? too much information!"
but hey, folks this is reality and I guess I'm just callin em' as I see em' as they say.

So, more of the D word last night, a slow down today and then when I just talked to her nurse, tonight, it's (D) is back again.
She's just not getting a break on this one.
She got a unit of red blood cells today as well as platelets and also is still running a fever. So it goes on.

She's toughing it out and hopefully getting some sleep in between all of this all-nighter action in the john.

Am going to post the most hilarious email that my wonderful friend Lara sent to me today.
It's of Jewish Haiku.
I know my mom and dad will get a good laugh from reading this when they tune in...
Thank you Lara for brightening my afternoon!
------------------------------------------------------------------------------------------------
Jewish Haiku

Lacking fins or tail
The gefilte fish swim with
Great difficulty.

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

beyond valium,
Peace is knowing one's child
Is an internist.

___________________

On Passover we
Opened the door for Elijah
Now our cat is gone.

____________________

After the warm rain
The sweet smell of camellias
Did you wipe your feet?

____________________

Her lips near my ear,
Aunt Sadie whispers the name
Of her friend's disease.

___________________

Today I am a man.
Tomorrow I will return
To the seventh grade.

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

Testing the warm milk
On her wrist, she sighs softly.
But her son is forty.

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

The sparkling blue sea
Reminds me to wait an hour
After my sandwich.

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

Like a bonsai tree,
Is your terrible posture
At my dinner table.

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

Jews on Safari---
Map, compass, elephant gun,
Hard sucking candies.

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

The same kimono
The top geishas are wearing:
I got it at Loehmann's.

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

Mom, please! There is no
Need to put that dinner roll
In your pocketbook.

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

Seven-foot Jews in
The NBA slam-dunking!
My alarm clock rings.

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

Sorry I'm not home
To take your call. At the tone
Please state your bad news.

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

Is one Nobel Prize
So much to ask from a child
After all I've done?

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

Today, mild shvitzing.
Tomorrow, so hot you'll plotz.
Five-day forecast: feh

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

Yenta. Shmeer. Gevalt.
Shlemiel. Shlimazl. Meshuganah.
Oy! To be fluent!

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

Quietly murmered
At Saturday Synagogue services,
Yanks 5, Red Sox 3.

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

A lovely nose ring,
Excuse me while I put my
Head in the oven.

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

Hard to tell under the lights.
White Yarmulke or
Male- pattern baldness.


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

Love, Kathleen

can you say "Atelectisis"?

Atelectisis is when a section of the lung collapses. So, yesterday in the wee hours Margie had this side effect from the chemo and was able to bounce back through the day.
So far, she's had the diarrhea, the lung side effect, just developing mouth sores. Of course we're hoping that this will be the worst of it. Of course her numbers are dropping as they do after chemo, so she's getting blood product to support her.

What a trooper, she's committed to walking as much as she can as it's vital that she keeps moving and doesn't get atrophied from all the bed time. So when I spoke with her yesterday, even in all of the exhaustion she says," well, I'm getting an i.v., and then I'm going to walk for a while, I only walked for six minutes this morning."

Funny story:
Throughout Margie's leukemia, she and I have had some sort of telekenetic connection similar to "twin-syndrome" type stuff, that is to say, the first time was early on in her illness, first thing in the morning at the hospital, she went in for her first bone marrow biopsy, which ended up being very painful for her. I didn't know that this was happening, but at the same time, I was in my house, taking a shower and started getting sharp stabbing pains in my lower back and hip! When I spoke with her later, she told me about the biospy and the pain and it was happening at the same time as the pain in the shower.

Another time, she was getting her lumbar puncture (this happened twice) where it was a difficult/painful procedure and her I was down in San Francisco getting my usual pains. ( I didn' t know the procedure was happening at the time, lest you find these coincidences suspect!)

So then yesterday she told me about her having her atelectisis side effects and the breathing difficulities. I told her that I'd woken up from a vivid dream early in the morning about being somewhere with some people and the leader was telling us about swimming through an underground cave to get to the other side and during the whole dream, I was filled with anxiety about breathing and holding my breath as we were told that we'd have to hold our breath to survive to the other side and that I'd have to be able to hold my breath for about a minute and a half. It was one of those dreams where I woke up exhausted from all of the stress and physical nature of the dream. So I told Margie about my dream, and she of course
was blown away by the connection as I was and then she says: " but what about the diarrhea??"
(luckily, THAT I did not get!) Thank you.

This would not be complete of course if I did not report on dad. I spoke with Robert after he'd gone back to the apartment and he'd just finished dinner and was going to be heading off to bed soon. He sounded, all things considered, pretty good.
We certainly need to keep tabs on his health/emotional and phychological as anyone in his position can pretty much turn into a train wreck at any time. He says he's getting some sleep at night and eating right, was planning on going into the hospital "late" this morning (8am) Hmmm.


All for now, will update more through the weekend as well as the big bash Randy and I are going to-
Love, Kathleen

Yeah!!! Post Chemo!!! An All Nighter, Yikes!!!

Anyone know how to spell diahrrea? Is this the correct spelling? Or is it a four letter word? Just imagine the worst you've ever had, Its a hundred times worst. So pray.

The nurses have to gown up to dump the urine in my bathroom. I was in the bathroom literally all night my eyes were burning with the toxins coming out of me, but all is well. Dr. Geoges came in this afternoon and said I don't have any bowel damage, I have no abdominal pain which is a good thing. Tested my potassium it was a little low, but overall, I'm doing well.

Had lunch today and salad which Cathy ate and soup which Bob ate. I had some chesse which tasted like wall paper paste, and (my taste buds arnt in tack right now) but i ended up having crackers with it and did ok. They broght me some high nutritional clear drinks and had lots of nutrition, so I'm gradually getting back into the eating thing.

Randy and Kathleen are going to Grace Cathedral to a wedding and the reception will be at the Mark Hopkins Hotel, and will dance the night away as a former ballroom dance instuctor I'm sure they will be the life of the party. Cant you just imagine the dancing with the finest orchrasta?!!!

Kathleen and Randy please blog us of this great experience the both of you, both perspectives. Please send pictures on the blog, this is a happy moment we want to know about, I love happy moments.

Thank you everyone for reading the blog, I love you all, Love M

Receiving Equals Gratitude

5-17-07

This is my focus,this is how I deal with any thoughts of doubts or fears.I am writting about all that I am receiving.

1. I am being cared for in the finest medical facility in the world.

2. I am receiving the most caring and professional nursing care there is or ever has been.

3. my team of physicians care about me and have the most vast body of knowledge on my condition and are free to utilize whatever available for my best interest.

4. Even though the ph of my urine is measured.

5.I have access to any and all information I want.

6. My professionals sit down and talk to me for as long as I desire.

7. I am receiving the best treatment for luekemia and was told of a woman just like me who was in my same situation that just flew home to Florida!

8. I am receiving the greatest and most love and support from my husband,children and all of my family. All 100% of them.

Saturday, May 19

All That I am receiving Today

1. I received my healing Chemo today.

2. I feel whole and am receiving Gods grace to be aware to celebrate and to wonder.

3. I received today laughter from a fun nurse.

4. I received my loved ones my husband, my children who are making as many
contributions they can make, and my eight brothers and sisters who are praying their hearts out for me.

5. I received the presence and person of my parents as I retold Dads love of the Sea on the blog.

6. I received the thrill of feeling strong physically as I lifted weights, and walked for an hour, I received the gift of feeling good.

7. I received confidence, trust, and love from my medical team, my loved ones and from Jesus.


8. From the (first) - grandson, on todays blog.We laughed at every single one out loud, thank you Dashell.


I Want to Discribe How it Will Be to Be Healed

I will be so greatful to be healed. It will be like driving through the Redwoods at night in a little rain and fog with the Mormon Tabernacle Chior singing, Ava Maria, The First Noel, Joy to the World, in full volume...us sitting side by side having this thrilling experience.

I Now Want to Discribe What it Would be like to be Healed from Chemo

It feels like cool waters quenching out a small fire some of the hiss and puffs of smoke...side effects are expected but soon pass as a action-reaction. The cool waters continue to put out any and all embers and any and all remnents of sparks...gone...gone for good.

We can settle back to sleep in out tents knowing we are safe and secure snugglying close, knowing that even though we feel small outside here in nature,in Gods huge universe, looking at the stars~we are all precious, protected and loved by God.

May 21,

Today at 1:00pm I started my third day of four days of Chemo.This Chemo is the strongest I've been ever given, and so far I haven't had any ill effects.Because my organs have been so healty I've been given this Chemo, otherwise I would not be able to take it.

Walked forty minutes with Cathy, We critiqued the hallways with both of us having worked in hospitals we were shutting drawers left open, and moving things into place, reporting spills to the staff, doing our best to keep staff, patients and visitors safe.

Thank you for all your love,support and prayers, Love,Margie

Margie has been writting, this the past few days, and I helped her write this on the computer for her. Bob took a day off today did laundry and cleaned house, He said he was going to vaccumme. We shall see! Love to everyone.Oh yes it was great to spend the day with Margie she laughed and laughed at what you wrote Dashell.Love Cathy

I've gotta be the heavy...

Ok, so I've got to be the heavy:

There has to be a 6pm cut off for phone calls to Margie. The calls go on to long and get her wired and what with
the hospital staff in and out of her room, she's not getting sleep that she has to have.

So, if you feel the need to talk with her, please call before 6pm.

or, write a comment on this blog and then she'll know you're thinking about her and she can read at her leisure.

Thanks!

Kathleen

allow celebrate and wonder

At first I was going to title this wieghts and walking with faith. The weights and walking part represents everything I have tried to do to make my body strong and tap into any and all resourses I may have amassed, accumulated over the course of my life that I can now draw on to take the necessary assult to overcome the leukemia. One sourse of strength for me is the time I spent far out on the pacific ocean with my Dad.

Sometimes he would say as if it was the most wonderful thing: WE ARE HALFWAY TO HAWAII!!!! Like, think of the people who would like to be where we are! Out in the middle of the pacific ocean unhampered by any land, sunrises and sunsets like no one has ever seen, the wind helping us along the huge waves that do the same. The vast expanses of Gods magnificent creation..... and THE FISH WE COULD EAT!!That was when he was really in heaven. To catch, skin and slice up a beautiful just out of the ocean albacore was the absolule epitome of living. And It didn't matter to him that we were on a thirty five foot boat with tanks of gasoline stored on the deck, and carrying say, fifty gallons of fresh water at the most. He was reveling in showing and shareing what he believed was the most wonderful experience there was and with no fear. I honestly believe that didn't exsist for him, like who would do this if they believed it was risky??

The first year we went down in mexican waters ort of San Diego I was 12 my brother Kenny was 7. This was commerical fishing in the fifties. We went off mexico illigally as it cost too much to get the required papers to fish there. So there were times we had to be on the lookout for the mexican patrol boats but they generally didn't go as far out to sea as we did, 200 to 400 miles out, thats where the fish were.

Kenny and I would take turns standing watch and steering the boat by hand. It was important to steer in a stright line, to steer the course the captain has set for where he thought the fish were. Everytime he saw a snakeiing wake he would come and see how far one of us was off cours and for every 5 degrees of the compass we were off we would have to add 15 minutes to our turn on watch. I was worse than Kenny, Kenny just did his time but I has lots more, finally Dad tied the wheel down with like a bungee cord so we couldn't turn the wheel hardly at all.

ALLOW CELLIBRATE AND WONDER OUR DAD DID THAT.

Well I'm signing off for tonite, I just got my laptop setup here my room, So Lots of Love to all, thankyou for all of your love, concern, prayers and good wishes.Love M.

one facsinating tid bit after another

Called the hospital just now and Margie and Robert were doing "laps" around the floor. She has to clock a minimum of 5,000 steps a day as not to get atrophied.
Yesterday I learned a facsinating bit about Leukemia cells which underlines how little we know about cancer:
Leukemia cells make their own cholesterol. (sneaky little bugger that it is) and that cholesterol has the ability to block chemotherapy. So that the chemotherapy can penetrate the L cell, Margie is taking what amounts to about 16 times the normal dosage of cholesterol lowering drug (sorry, don't know name) and that drug disarms the L cell and takes away some of its defense. Interesting or what?

So here's a run down of the factoids (of course they change all the time, so I am accountable for nothing)

-10 days of this cholesterol lowering drug (began on thursday)

-on day 3 of the 10 she'll start 4 days of chemo/24 hour drip through her central line (that's the hickman catheter in her chest)

-after the 10 days and her numbers come back up, she'll then undergo spinal and cranial radiation

-she's been warned that this chemo dose is much more aggressive than her original induction so there are likely to be side-effects (no body goes through this with nothing, right?)

-yesterday had to get infusion of blood product because her platelets numbers and hematacrit numbers were dropping. Which essentially means that the Leukemia is becoming "active"

From what I understand of the nurses and staff at the University hospital, they are fantastic. I just spoke with one of them briefly and she seemed to already know so much about Margie and Robert, and expressed such a warm level of care and enthusiasm for her, it sure makes me feel assured and confident.

Love to you all,
Kathleen

Two Steps Forward, One Step Back

Update on Margie: She's at the University Hospital now and will be for a bit as she's now been checked in to start another induction of chemotherapy. As I reported last night, the "test" infusion of mouse antibody did not go well, so the transplant team has determined that the antigen therapy and radiation is now scrapped.

The new "plan" is to hit it hard with a higher intensity chemo which she's already been warned that she should expect to get quite sick, after the chemo and her numbers come back, she'll have spinal and cranial radiation to further eradicate the leukemia cells.
One has to remind oneself that the idea here is that if they don't get ALL of the leukemia cells, the transplant won't work.

So, with the transplant still in the distance, the date has changed, approximately 6 weeks out and a new course of action is being worked up even as I write this.

I talked with her a while ago, and she said she feels good, her b.p. is back up and her heart is strong. She feels like the doctors are feeling good about her condition going in- heart and lungs are strong and all.

All for now-will update as I get more information.

with love and prayer's for Margie,
Kathleen

Margie rejects mouse...

Today was Margie's "dress rehearsal" of sorts with the mouse antibodies. They do this to do a bit of a trial run to see how her liver responds as well as her other organs so that they are prepared for the real-deal antigen therapy coming up.
So today was an all day infusion of mouse antibody at the University hospital and apparently about one half to two thirds of the way through (she'd also been given the appropriate drugs to keep at bay any adverse reactions) Margie has some severe
allergic reactions to the infusions whereas her blood pressure dropped as well as her oxygen levels.

So, the medical team there reacted appropriately and tonight Margie is being monitored at the hospital, Dad went to the apartment to sleep and tomorrow they'll meet up with their transplant team to discuss the new "direction" as it were.

Sounds like antigen therapy and radition are not in the cards. Stay tuned and I will keep all of you posted on which direction Margie will be going after these latest events.

Most importantly, after what sounds like it was a very difficult day, both Margie and Robert are comfortably and sleeping.

Love, Kathleen

Today's Wonderful News!

Yes, I just spoke with Margie and the best report she can have right now: Her spinal fluid came back clear:
NO leukemia cells!!!

That is fantastic news because it's one step in a supremely positive direction toward her transplant!

On a funny side note (just can't help but mention this) After Margie and Robert got this terrific news, they had a meeting with the chaplain STEPHEN KING. (Let the jokes begin!)

Today they've got meetings and still waiting on news of her antibody tests so that they will be able to proceed with the other detour procedure of antigen therapy.

But for now, WONDERFUL NEWS!!!

Love,
Kathleen

seattle art museum jumps

Hi, to all,

Yes, yesterday I had a lumbar puncture where one of two or three doses of chemo, about 2cc are instilled into the cerebral spinal fluid to eliminate leukemia cells there. I felt fine afterwards except for feeling worn out, it was wonderful that Cathy was with us, it helps so much. If you like a focus for prayers other than generalized, pray this chemo does clear the spinal fluid, otherwise they can't go on with the transplant. Dr. Ridelle did say that in his experience that is the rule, that it does clear it.

I slept for 2 hrs when returned to the flat and Cathy went home after making us some coffee for that was the Dr. instructions to help prevent a spinal headache, which I haven't had, but was told they even give caffine iv for those who do have trouble with it.

This morning I woke up refreshed and ready to DO something on this rare free day. The 75year old Seattle Art Museum has been closed for two years for expansion and this morning at ten am was the grand reopening. They are actually going to be open for 48 hrs stright with entertainment around the clock and free admission. One of my favorite groups wa performing there this morning @ 11am so intending to take the monorail a few blocks away that would bring us fairly close, we headed out on foot at 8:30 only to find it does not run till 10 o'clock. So we walked for 45minutes and stood in line for a while as they had timed entrance. Then we saw and heard the govenor and mayor give short speeches, heard the Total Experiene Gospel Choir for a half hr toured the museum and lunched in their new restaurant. The walk felt great but so did the monorail going back. The humorous thing on this outing was and for those not familiar with the SAM, there is a huge moving sculpture in front of it depicting a human form that moves, hammering away at something, it is supposed to represent the working man, class whatever, it must be 80 feet high. So that is back in motion. Across the street there is a small entertainment business called the Lusty Lady and they have a marquee with two sides, one side said Congratulations Seattle Art Museum! On the other side it said: Keep on hammering- big guy!

I took another nap when we got home but later felt compelled to make chocolate chip cookies to christen this kitchen and see how the oven works.

To get back to business, I have a calendar from SCCA which goes like this: 5/9 lumbar puncture with chemo again, blood draw to test for mice antibody. 5/10 nothing. 5/11 meeting where they bring it all together- all the test results for which I have asked for copies of everything. 5/12 nothing. 5/13 start oral iodine drops to protect my throid from radiation for a month. 5/14 nothing. 5/16 test dose of radiation that goes primarily to leukemia cells,they say here, all day infusion. Oh, and a bone marrow biopsy.

5/16 hospital-gamma scans. That tests how much radiation is going to the organs especially the liver and based on those results which they take three days to do, the radiaion dose is calulated. 5/19 to 5/22 nothing

5/24 admit to univercity of washington medical center for therapy dose of antibody radiation again, seeks out leukemia cell and is the only treatment that does this, for which I must go into isolation for 6 or 7 days. No one comes into the room. This is what I was fortunate to be able to talk to this lady "Hope" about. She did all this and did well. She said you get bored in the room but you feel ok. It looks like any hospital room and has tv and a phone but you con't take stuff in there with you likt to entertain yourself with. I guess I could excercise.

A part of me hates to subject anybody reading this to this mindboggling sort of worst case stuff,I just say to you it made me feel so good to talk to one person who has been there and come out of it and when I spoke with her she was through the transplant and is feeling good. So even in what sounds so awful I am getting some reassurance snd thats for you too. So I guess do like I am, take one day at a time and celebrate the successes and sometimes even bad news can be good news in disgise. We just don't know where a development might lead, it can be positive later when it didn't look that way at first.

During Noah's life, his nurse wrote three words on a piece of paper:

ACCEPT CELEBRATE WONDER

Noah's family did their best to internalize those concepts and to act them out as much as possible, I find these words carry me forward now.

Tomarrow is Michael's birthday and we will be celebrating at home with he and Carol, Jeanni Greg John David Rachal William Alex Sammy and Rod and Colleen. Out on the deck. Maybe have a fire in the firepit I hope.

Love, and God Bless You, Margie

and yet another change....

For any of you devoted readers, you've figured out by now that checking back is a good idea as things change sometimes daily here at Margies wonderful life! Is that what makes it so wonderful, I ask you dear reader?

So, you're with me so far with the whole found-leukemia-cells-in-bone-marrow- now -we -have- to -put- mouse- anti-bodies- and -radiation -through -her- body- thing, right?

Well, the latest is that from that lumbar puncture a week ago (spinal tap) they've found Leukemia cells in her spinal fluid too.
She and dad decided to flee the Hutch last night, went back to the island to have some much needed change of environment, dinner with Rod and Colleen and Mike and Carol and then tomorrow morning (friday) will be back at the hutch for chemo injected into the spine (2-3 days of this) Next week starts the whole process of the antigen therapy (mouse/radiation combo)

As you may wonder yourself, many questions have been coming my way as to the radiation part of this treatment. Stay tuned, dear reader, as we are finding out daily more information about this positively mysterious turn of events. So far, we know that the lead lined room, where she'll be isolated is called the "hot box" and that's for 7 days. We still speculate as to how fair Margie will be taking her meals...We do know that she'll be so "hot" that she'll be doing her own blood draws whilst she's in isolation!

That deserves a capital "OY-VEY!"

All for now. Mom, you are in all of our prayers
Love, Kathleen