11-21-11 Changing Plans

So yesterday I went to youtube and looked at videos of people that had gone camping in Yellowstone.  

Yellowstone in July is crowded with humans, bears are at their most protective of their young, and it turns out Yellowstone is prairie.  Now why I didn't glom onto that fact while researching and looking at pictures of bison, is beyond me. 

I don't like prairies.

I don't like crowds.

AND I AM TERRIFIED OF BEARS.

There were videos of campers setting up their tent camps and then turning on their ipod bose powered heavy rock music.  What???  The don't seem to realize how far noise carries in the woods.  And they showed how close all their neighbors were.  Ick.

Did I mention there were bears?  

These idiots are having a grand old time with a bear attacking their car!  The bear just comes up to it, with no provocation (like a furiously barking dog) and pounds on the windows and mouths the outside mirrors.  And the family just sits there.  JUST SITS THERE LAUGHING.  Holy crap!  

I would have run over that bear so damn fast.  People, Bears Eat People.  I am a person.  I don't EVER want to meet another bear.  When I lived out in the woods on the Olympic Penninsula, I would occasionally see a bear from my kitchen window.  I always grabbed my rifle and waited to see if the bear would require action on my part.  

Now those were just little old black bears, and I was living in their woods.  I got that.  And they never really paid any attention to me.  Or came too close.

Yellowstone has Grizzly Bears.  Nope.  Not gonna go.

Need to rethink this plan.  

There are books by Ansel about Rainier and the Cascades.  Much closer, in rescuing distance if the trailer goes wonky, and I can take the dog easily.

AND NO GRIZZLY BEARS.

And not so many people.  And, most importantly of all, I love the topography here.  I love huge mountains, rushing water, Puget Sound and it is all safe to touch.

In Yellowstone, there may be volcanic crap, but you can't touch it.  They have poisonous water, boiling water, rattlesnakes, scorpions, hot earth, bears and huge animals that are scary to be so close to.  

I am staying closer to home.  I will adapt this adventure accordingly.  Perhaps learning about Emerson, Muir and reading Ansel's books on how to take pictures will develop into a great idea on its own.  And continue his work using his ideas out here..............something to think about.

11-15-11 Soggy

Sadly, I didn't realize that one of the windows in the trailer was open.  Since we last went camping months ago, it has had a ton of time to let the rain in.

I am very sad.

The bedding had to be all thrown out.  WAAAAAAHHHH.  I had the perfect sleeping set up.  I found this fabulous 5 inch thick memory foam on the side of the road and had put that on the mattress we had down in the basement from when JR's mom had come to visit (we did not put her in the basement, we were just keeping the extra mattress there!).  It was the softest, most wonderful nest ever.

And it is now in the back of the truck headed for the dump.  Covered in mold and soaked through.

Sigh.

It was a beautiful day here and I was fixing the spot on the front of the trailer where the metal had been twisted a bit from hitting the back of the truck that one time it fell off the hitch (before learning about locking it on!!).  And once that was done, I thought I would poodle around the inside and check it out, clean it up, get it ready for a winter sleep.  Luckily there was no moldy smell, and I was happily puttering away putting things away and reorganizing.  I had just poked my head out to talk to JR and tell him that I had finally made a decision about taking the truck and the trailer, that since I had the trailer and the truck and I loved the trailer, I was just going to take it and that was the end of that.  No buying or renting anything new.

As I was saying this and folding the extra set of sheets that Kate had used, I noticed that the mattress had a funny stain on it.  And bam!  I realized the entire bed was soaked.  I think the vent was not closed properly and the side window was completely open.  I checked the big back window, but that seemed just fine, all sealed and happy.

So now it is back to Craigslist to find new bedding.

Bummer...........but at least I made a decision about HOW to camp on the adventure.

11-14-11 Where do I fit?

So many things seem to be coming together for this little adventure!  As if all of my interests have been leading to this point.  It combines my love of researching (almost anything), my love of photography, camping and even my love of driving. 

I am pleased beyond belief to report that the book I found in the library by Ansel himself, contains a whole page of his instructions on how to get the best photographs in the two parks!  I don’t understand all of the instructions, but that is yet something else I can look up.

I had been reading a book called “The Happiness Project”, well, still am reading it, I tend to read 3 or 4 books at the same time.  It is a wonderful treatise on how to be happy, what it means and how to achieve it for yourself. 

I seem to have been struggling my entire life with how I fit into the fabric of American life.  I am not good at being a 9-5 worker.  I cannot force myself to do it.  It makes me so UN-happy.  My life as a pastry chef was the closest I have ever come to being completely happy with working for someone else full time.  I would wake up filled with excitement about what I would make that day.  But even as I say that I realize that one of the reasons that I loved it so much was that I had the bake shop all to myself.  It was in a resort hotel in New England.  I didn’t have set hours, and no one told me what to make.  There was total autonomy. 

I have never been truly driven by the almighty dollar.  Very un-American of me, I know.  I always wanted just enough.  Just enough to pay the bills and have enough to enjoy my “not working” time with my interests.  But that means that I have not really been very good at getting ahead.  I will not do better than my parents have. 

But maybe there is something about the autonomy of life that I must have.  I know that I am smart.  Always have been.  Learning is super easy for me, and I think very quickly.  Lately due to the chemo drugs I must take for the rest of my life, there have been cognitive disruptions.  And I believe that I may be slightly depressed by that.  I cannot remember things the way I used to.  It is really a “brain fog”.  Sometimes it is very hard to think, I lose words all the time now, and holding complex ideas in my head without notes is very very hard. 

Which is another reason this project is so good for me.  It feels like the first real thing that has held my interest and gotten me excited for the future.  Sadly, my autonomy has cost me my law practice I think.  Since I never had any staff, once I stopped taking new clients so I could catch up on the old ones (and given the cognitive disruptions, that was very overwhelming) the business seemed to die. 

Don’t tell anyone, but I don’t really miss it.  What I miss is the income, and the satisfaction of helping people.  But I don’t trust my brain anymore not to make mistakes that won’t be caught until years from now (since I do estate planning) and I won’t be able to fix them by then. 

That plays into my struggle of where do I fit.  Since I don’t think I can find an office job that can accommodate my changing health concerns, and I don’t fit the American work ethic, where DO I fit in?  Each day is so different with regard to side effects of the drug.  Some nights I cannot sleep at all, despite taking a sleeping pill.  The next day I am so tired I can barely move.  Some days I am just stuck in a cycle of fatigue that doesn’t seem to be tied to sleep at all, just a side effect.  Then there are the days filled with pain that I have to take dilaudid or morphine for.  And most days include dashes to the restroom.  What employer is going to be able to allow 15 minute bathroom breaks all day long?

I cannot remember what someone just told me, and time sometimes just slips away.  Today it is already 2:15 in the afternoon.  How did that happen?  What did I do with the day other than walk the dog?  I have no idea.  I took some chicken out of the freezer to make cordon bleu for dinner.

Then I wonder, why am I beating myself up for this?  I do have a part time job that pays my basic bills.  I am keeping house for my husband, being a good dog mommy, I cook daily (although we go out a fair amount too).  And on top of all that, I have leukemia. 

I am doing really well in my quest to be a better housekeeper, albeit that meant hiring a cleaning service once a month to do the deep cleaning.  But the daily chores of housekeeping are going remarkably well.  It turns out that a full on press of effort to put everything away or give it away or throw it away has a positive effect on the cleanliness of the house.  With all surfaces cleared off, it is much easier to see things that are not put away, and to then put them away.

And yet……………and yet……………….I do beat myself up.  I compare myself to my friends, who are remarkably successful in their law careers.  I compare myself to my parents at my age.  By my age, they had each seemed to be more financial stable. 

Ah the self critical eye that only having enough resources can afford. 

I am supremely humbled by my loving husband’s attitude.  He is always there to pick me up off the floor and pat my head and tell me that he loves taking care of me.  That I do contribute to the family.  That I matter.

Why can’t I hold that thought?  

11-11-11 Veteran's Day and Test Results

It looks like it might not be a good idea to bring the dog.  Sigh.

Both parks are quite adamant about restrictions.  Yellowstone allows dogs on 6 foot leashes, 100 feet from the roadway but that is it.  They are not allowed on the boardwalks.  I have been told that I am going to want to go on the boardwalks to see the geothermal aspects of the park.  Pets may not be left in vehicles, the only exception is if you are in sight of the car.  

Grand Tetons is worse.  Not allowed more than 6 feet from the roadway.  

They both warn how dogs are bait for bears.  

I am terrified of bears.

I shall have to ponder this some more.  

I talked to my friend Kate and she is on board with the trip!  If I cannot take my best friend (canine), I can at least go with my best friend (human).  She has been to Yellowstone before and was the source of the information about the boardwalks.  She also thinks it will be hard to find open campsites.  She might be correct.  But the parks are both surrounded by national forest.  So really, if we can't stay inside the parks, we should be able to find forest service roads we can pull over on and camp.  

So now back to the choice of vehicle.  Renting a minivan or SUV is way too expensive.  $1000 for two weeks.  Nope.  New plan.  What about a canopy for the truck?  The truck is in great shape, low miles and I just had new tires, new ball joints and a general fix it done.  But it turns out canopies are expensive too.  This needs more investigation.  If the dog is not coming, we don't need the extra room in the cab for him, and can probably pack all we need to tent camp in the back of the truck (this much I do know).  But am I brave enough to tent camp in bear country?  I am not sure about that answer.

Last night I was up most of the night, it is the 4th night out of 5 that I just could not sleep.  I get about an hour in and then wake ALL the way up.  This time I think part of it was knowing that JR was going to call me in the middle of the night to pick him up.  Totally my fault.  I had the car that day, he took my truck to work.  I wanted my truck.  So I put the leash on the dog and we walked 1.2 miles to his office, downhill the entire way.  With my wonderful dog pulling me the whole way.  My calves were burning by the end, I had been having to take such small mincing steps to keep my balance and try to not get pulled to the ground by a very excited dog.  I think that putting together a workout with him will be a good idea, so that I am in better shape when I get to Wyoming and can easily do some of the hiking necessary to take the Ansel shots.

I had the car because I had gone to the oncologist yesterday for my 3 month check up.  The cancer center is in Seattle, and it is much easier to park the car in the garage than my huge truck.

I checked in in the lab and waited for my name to be called.  The guy that drew my blood had done it before, he is a very nice guy, but has some medical problems of his own, he looks a little like Quasimodo, there are odd large lumps on his neck and back.  Poor fellow.  And for some reason he didn't like the look of the vein that always works.  I have the crappiest veins!  They roll away and then collapse if you actually hit them.  I have learned that as I sit down, I apologize for my crappy veins, tell them that to best get blood out of me, they should use a pediatric needle and a butterfly, and then I point to my one good vein.   He didn't like it.  Kept patting it trying to get it to raise up.  Now this vein is sitting right, and I mean RIGHT under the skin.  You can see it clearly.  It is on the outside of my right elbow in the fleshy area just below the joint.  It doesn't hurt too much if you need to poke around there.  

He still doesn't like it. 

He looks at my other arm.  The one with no visible veins.  Except for one on the inside of my forearm, in that really thin skinned area, the one that hurts like a MF if you poke around in it.  He decides that is the perfect spot.  I take a deep sigh.  I am usually pretty vocal about blood draws.  I know my veins really well at this point.  But for some reason, I decide to let him have his way.  He doesn't know it, but I will only allow one stick per vampire.  If he misses, I will ask for someone else.  

He hits on the first stick.  

And it HURTS.

But he got it. 

I go to lunch at the cafe on the 2nd floor and have some soup (not very good soup unfortunately, sometimes their food is great, but not yesterday).  And I get a glass of water and a cookie.  

My appointment is an hour after the blood draw, gives them time to process the blood for the CBC (complete blood count).  But the PCR (the one that detects the actual cancer cells) will not be back until next week.  It just takes longer I guess.

I go up to the 4th floor and check in.  I am called very quickly.  Unusual.  Hmmm, I think to myself, this could be good, I know that I have one of the first appointment of the day for Dr. Oehler.  I deliberately make that so.  I go back, they weigh me.  Sigh.  I lost a couple of pounds, but not much.  My blood pressure is 112 over 67, my pulse is a nice 70, and my temperature is my normal, 97.7.  

The nurse leaves and I sit and wait for the doctor.  And I wait, and I wait.  My appointment is for 1:30.  Sometime after 2 Dr. Oehler arrives.  And I forgive her immediately.  She is the best doctor on the planet.  We are about the same age, and she is so understanding and compassionate.  I instantly feel safe and better.  I am still having tummy problems and had almost just run to the bathroom.  Glad I waited.  

The results?  Perfect.  My WBC (white blood count) is a very normal 6.7.  And even my calcium has come up.  We were talking about that at the last appointment, she is concerned due to my age and the fact of the hysterectomy, we won't know when I really go through menopause without testing for it.  So I think that next time she ordered a bone scan, and depending on the result of that, will determine if we do hormone testing.  

We chat about her upcoming 50th birthday and where she and her girlfriend will go.  I thought we were done, but then she did a physical exam, all fine.  If the tummy issues don't go away after the antibiotic treatment is done, I should call her and she will prescribe something to um, help.  

I am done and go out to schedule the next visit in February.  Dr. Oehler will send me my PCR results in an email.  She is so approachable and easy to get a hold of.  We talked about my new PCP (primary care physician) and she said to be sure to give him her email address, so he could ask her questions if he needed to.  I think that would be great.  

Did I mention that Dr. O has told me to get a flu shot?  I have resisted them every year.  I am too afraid that the shot will GIVE me the flu.  But she assures me that they will be giving me an inactive vaccine.  Then she leaned over and said, "The chances of you getting the flu from this are minuscule, but I grant you that if anyone is going to get the flu from an inactive vaccine, it will be you."

I have to admit, having my most trusted medical expert tell me that it is not all in my head, that I really do get more sick than the average person..........well, it makes tears well up.  I struggle greatly with feelings of in adequacy.   For some reason I am always afraid that I am faking it, that any one else would be able to power through.  Luckily, I married the most amazing man.  And when I am feeling that way, he looks me directly in the eye and says "Horseshit!"  

I love him.

So what did we do for Veteran's day?  We took advantage of the free food offer at a local brew pub.  They had some new items on the menu and we realized that if I ordered the double cheeseburger, it was only a dollar more than the regular burger that I usually get (and eat only half of, JR usually finishes it for me).  So I ordered the double and asked for a piece of aluminum foil as well.  The second patty was for the dog, you saw that coming right?

Very happy dog.  

And a very proud army wife I am too.  

Ansel Adams Adventure Begins

Today I began to think about this trip in earnest.  Came up with a great idea for either renting a minivan or an SUV, that way my old truck doesn't have to add on a bunch of miles and the dog would be more comfortable.  

Chase and I walked one of his favorite walks today.  We call it Lake Wagatail.  But its real name is Wapato Park (http://www.metroparkstacoma.org/page.php?id=285).  Beautiful little lake with tons of birds.  They are upgrading the trail around the lake so that it is all paved.  This is the lake where I have gotten wonderful pictures of eagles landing and sitting and screaming back at the crows who are trying to dive bomb them.  

The lake is surrounded by trees, some of which are deciduous and are in full color right now.  It was a beautiful walk.  As we were leaving the house to get there, I thought about different ways to walk the dog so that my hands are free to take pictures (when we get to Yellowstone), so I ran one leash around my waist, then attached that to a short leash (2 ft) that was attached to his collar.  This worked remarkably well and we managed to stay hooked together that way the whole walk.  This idea is a keeper.  No shoulders were pulled against, no arms tugged.  A few times I was pulled a little off my feet towards something he wanted to investigate.  But not bad for a first try.

After our walk,  about a mile, we got back in the truck and headed for the main Tacoma library.  I wanted to do a little research into the Yellowstone project.  I wasn't sure if Ansel Adams had even gone to Yellowstone. 

Nor was I even sure that reference librarians even existed anymore. 

They do.  On the 2^nd floor of the library.  There were three women behind a circular desk over by a bank of computers that were in use, must have been about 50 of them, didn’t realize that libraries had increased like that.  My own pet peeve about the new modern library has been the death of the card catalog.  I have found so many cool books and ideas by just browsing the card catalogs of different libraries.  Very sad that now you are only given what you ask for.  Which is why I want to the human librarians to start my search. 

“I am looking to start a research project, I want to put the dog in my truck, head out to Yellowstone and the Grand Tetons, and recreate Ansel Adams trips and photography.  I am not even sure that he went there.”

A burst of energy erupted from my three little librarians.  There was the older woman, who was clearly the head librarian.  A middle aged (as I am) woman, who got excited because she had been there three times and thought this was a great idea, and a younger woman, who it seemed was being trained in how to research.  I could be wrong about that, but older woman looked over her shoulder and directed the search inquiries. 

“This is the first time you are looking at this?  You haven’t googled this?”  Was the first reaction from them. 

“No, this is my first stop.”

More excited research goes on, tiny notations are being developed on old card catalog index cards.  My sadness about the old card catalog reared its head and I look over to the stack they are using for scratch paper and see an old entry for a book on the FCC, an Economic History.  Ugh.  Well, they can’t all be winners.

But I realize as I talk to middle aged woman, that the other two are not quite getting it.  Older woman has co-opted the line of thinking and she has gone off on a tangent that I don’t want.  So I pay more attention to her, and realize that she is doing some odd search that requires 4 words.  Now why she needs 4 words is a mystery.  And why the word “and” has to be in this search is beyond me.  She has come up with “Adams and Yellowstone Park”.  This is not helpful to me, as Adams is such a common name.  So I ask, “Why don’t you replace Adams with Ansel, it is much more unique and will a more directed search.” 

The looks I got were priceless.  You could see the thought appear, who does she think she is?  WE are the reference librarians and WE know how to research.  But then the content of what I have said sinks in, and it is acknowledged that Ansel might be a better search term.  I still haven’t figured out why they need the word ‘And” since in a Boolean search you just use the ampersand.  But when I bring up the word Boolean I get blank stares.  Sad.

Then the idea of going to the special collection comes up and they are off to the races about me getting the “Morgan book”.  I will have to ask for it, it is in a locked collection.  I take a look at their notes and I see that there are a bunch of call numbers all written down, with almost no notes other than the numbers, and they are just chicken scratched all over the tiny page. 

They hand me the tiny page and start talking about how unique this search was, what fun it would be.  I look at them and ask, “Are you serious?  No one has done this before?”  “Nope, never been done. You should write this book, we would love to buy it!”  I get very excited about this.  “Let us know how it is going!” they call after me as I head out on my adventure!

Off I go to the special collections area.  I have never been there, didn’t even know it existed.  And there is another set of librarians sitting up there.  Who have no idea what I am asking, as there is an entire room devoted to Morgan, and archived stuff down in the basement that might have to be brought up.  So I give up on that idea and am guided over to the section on Northwest exploration.  Very cool.

The special collections room is beautiful.  It is a rotunda with large glass windows, marble floors and gold colored handrails.  The books are arranged in radiating shelving and there is a plaque thanking Carnegie for donating the money for the library.  I had known that Carnegie had donated a huge amount to public libraries and knew about the one on Greenlake in Seattle, but didn’t realize that the main library in Tacoma was also one.  I had only ever been in the new section of the library to look for mystery books and browse the new books sections. 

As I wander around the 979 area, I find a section on Yellowstone (about 5 books).  Eureka!  But it is in the 978 section.  Hmmm.  My little librarian friends have neglected to add this to my list. 

And I find a book called “Death in Yellowstone.”  Interesting.  So I take it out and read through the introduction.  The author is a former park ranger who then goes to law school and is fascinated by the personal injury law suits that arise from the park.  So he starts a research project into death by nature and death by mankind.  And gets his gruesome findings published.  I start to read the first chapter.  It is an horrific story of a man whose dog got loose, jumped in a hot spring, and the man goes in after the dog.  I will not related the details here.  Suffice it to say, yuk!  And I am taken aback.  Should I not bring the dog with me????  But my dog is not that stupid.  The dog in question was a great Dane, NOT known for their acumen.  And my dog doesn’t like the water. 

I reshelve that one.  And go down to the first floor to look at the other numbers the librarians have given me.

I go to the photography section first, and find 4 books on Ansel Adams.  I take all 4 out and go and sit down to look at them.   I find by flipping through the pictures, that indeed Ansel has gone to both Yellowstone and Grand Tetons!  Excellent, my idea has merit!  I also find a timeline in the back of one of them, detailing when he has gone.  Woo Hoo! 

My tummy is starting to feel odd. I slept very hard last night, having had two bad nights in a row previously.  And am slightly fuzzy today, can’t seem to wake up all the way.  And my tummy has been odd for two weeks now.  Very rumbly and um, active.  I have been spending a great deal of time in the bathroom.  Sigh.  I never know whether these things are side effects of the drugs, or that I am sick.  But since I just started on the antibiotics two days ago, this could also be push back on that.  Sigh.

I want to look up all the numbers they have given me, but I am running out of time before I must lay down.  So I walk back towards the 508 numbers (supposedly a road itinerary for Yellowstone) when I pass by the section on US Travel.  I stop, this isn’t on my page.  But right there on the end is a section on travel guides for get this, Yellowstone and Grand Tetons by Lonely Planet.  Yippee!  I take that out and notice that there are LOTS of books on the two right here.  Very colorful spines.  Except for this one old looking spine.  No pictures, no words.  I pull it out.

‘GRAND TETONS AND THE YELLOWSTONE PARKS”  by………you guessed it, Ansel Adams. 

My mouth drops open.  Why haven’t my three birdies found this one?  It is completely on point. 

I start to march up to the second floor to let them know about it.  I mean, they told me to let them know.   As I get to the top of the stairs, who is coming down, but the oldest birdie. 

“How is your search going?” she asks. 

I hold up my treasure and show her.  “This was not on your list and it is the holy grail.”

“Oh my, how wonderful that you can go off on your own and don’t rely on teachers for all your information. I shall let Shelly know.” 

I give up.  Walk back down the stairs and check out my three books.  Two on his photography and the travel book by him. 

Time for my nap now.  Tomorrow is my 3 month onc visit.  Blood draw at 12:30, dr. visit at 1:30.  I am somewhat nervous, but hope that nothing new is found.  That I am still holding steady with my numbers.


Later that same day:  I was playing with some of my photos and turned this one into a black and white.  I am amazed.  It looked good in color, but in black and white, it is stunning.

Thinking About Adventures

A friend has mentioned that they are going to go to Yellowstone next July.  I think I am going to go there as well.  I have always wanted to go to Yellowstone, Yosemite and the Grand Tetons.  So just a little bit of research has sparked some absolutely fantastic ideas.  And some questions and decisions to be made.

1. To camp or not to camp?  My trailer is a bit heavy to haul all that way.  But I could rent one from the MWR at McChord AFB, a little fiberglass jobbie, that would only run me about $200 for a week.  Camping at Mammoth Falls in Yellowstone is only $14 a night.  Or should I try to rent a cabin?  They are going to be over $200 a night.  This question is predicated on the answer to the next question......

2. Dog or no dog?  This is also a big question.  It is the perfect doggie adventure.  We would have a blast together.  And he would make me feel safer going out by myself......  But he is only allowed on a leash in the national Parks, and only 100 feet from the road.  This may not be a problem as I am terrified of bears and don't want to go into the back country by myself.....but there might also be stuff I want to do that he would have to be left alone for, thus the cabin v. trailer idea......I guess I could also just tent camp.  Sigh.  This is getting more and more muddled.

3.  Great idea!  Follow the footsteps of Ansel Adams.  Must also read up on John Muir and Ralph Waldo Emerson.

4. This will definitely be a photo journey.  Need to get better at understanding my beloved DSLR, and get used to using a tripod.  But using a tripod with a dog attached to my other hand......see we are back to question 2 above.  Hmm.  Must find out about tying the dog to my waist.  And also need a remote shutter thingie.....

more later..........big bang theory is about to start...........love that show!

Had a good 3 weeks

But today is not so hot.  Very tired and nausea in high gear.  I managed to force myself to do a bit of work, which unfortunately (or fortunately, depends on your point of view) has created more work.  I will think about that all tomorrow.

One of the recurring thoughts that this disease brings on is the monitoring of medications and what will happen in the future.  Hopefully, JR will retire from the Army (waivers and such might be needed--very long story for another blog, not this one) and we will have Tricare which works as the plan b for medicare.  I think I have that right.  The question is of course, will they cover me, and how will that work with my drug.

Fortunately, for those of us with CML, there is the world's best information site, the Leukemia and Lymphoma Society website: http://community.lls.org/community/bloodcancer/livingwith/cml?view=discussions&start=0 where you will find others with this disease who can answer your questions with real information or just lend a shoulder to cry on.

One of the recent discussions was how Tricare works for us.  I wanted to be sure to save this information so I am posting a response here that discusses how the system can be worked properly:
I actually talked with someone else at Express Scripts (TriCare Mail Order Pharmacy co.) and the true story is they offer 45 day supplies of Gleevec instead of 90.  However, if your oncologist (or PA, Nurse Practititioner) calls and asks for a quantity over-ride, they will authorize the increased amount a year at a time (on a case by case basis.)  The phone number for the quantity limit over-ride is: 866-684-4488 and phone number for Express Scripts is: 877-363-1303.  Since Gleevec is on their formulary, it is a $9 co-pay (can't beat that!)  I'm not sure on their coverage for Sprycel but I wish you luck!!  Lisa


Right now we are covered under the Railroad plan, so I get my meds from Accredo, the specialty pharmacy branch of Medco.  


Today also brought more medical stuff.  I am about to run out of Ambien, which I need on occasion to get to sleep.  Sometimes the meds make me wiggly and I have muscle spasms which make it hard to get to sleep.  Unfortunately, my PCP (primary care physician) has retired.  And trying to find a new one has been hard.  I am on the waiting list for one, but that won't happen in time for my Ambien.  So I had to ask my onc for a prescription for that.  Luckily she said yes.  But only wrote it for 30 days with 3 refills.  Sigh.  Medco will fill up to a 90 day supply.  So I am not sure if I have to call them 3 times and have them charge me 3 copays or if they will put them all in one bottle.  


And then there is the Meloxicam I take for my elbow and shoulder.  Again, since Dr. Fry (PCP) retired, I needed another source for that.  I also see an orthopedic specialist for that and he agreed to give me a prescription for that, but it just showed up today with only a 30 day supply and no refills.  Double sigh.  I don't think that 30 days is going to do it.  I have been on the stinking things for a year now, the problem is that the Sprycel I take for the Leukemia also prevents my shoulder and elbow from fixing themselves.  


And I am trying to amass all the meds I take as I am going out of town for about 2 and a half weeks.  Totally new for me to have to think about medication for that far in advance.  To make sure I have enough to take with me, and to have enough so that once I get home, there is enough until I can get more.  


Ok, back to the couch for me.  enough of this horrid sitting up business.


Tomorrow will be better.   But here is a couple of new photos one from the zoo (the otter) and one of a thistle out in the Port's wetland preserve.

Post Rummoli Party Exhaustion

So Sunday afternoon I hosted an all girls Rummoli party.  What is Rummoli you ask?  It is a really fun game that has elements of poker and rummy.  There is betting involved and it moves fast.  My friend, Jennifer D's family has been playing it for generations, and it is popular in Canada.  Most people make their own boards, so of course, off I went to Home Depot and the fabric store.  It took me about 2 hours to figure out how to cut the board into a perfect octagon, but once that was done, and covered with green felt, I had a blast with the sequins and glitter.  It is a SPARKLY board.

I made some finger sandwiches and purchased pretzels and cookies.  I felt bad that I did not make every last item from scratch. But I cut myself that slack I was talking about and just went with buying really good quality cookies.

We had a blast.

Today, it is almost 2 pm, and I am finally getting moving.  Just could not move this morning.  I had spent most of last week cleaning the house to get ready for the party and Dad's visit on Thursday.  He is stopping by for one day on his way to Alaska to go fishing.  I think we shall go to the zoo.  There are two new baby snow leopards that have just been born and a new red wolf exhibit I haven't seen yet.  Lots of photo opportunities! It will be fun.

I also figured out why there were harbor seals up the river, the salmon are running!  The dog and I walk along the Puyallup River, down near the mouth of it and that is all Indian land, so the non-Native American's cannot fish that area, I was driving to the pickle farm to get some fabulous tomatoes, and saw all the guys lined up along river road, fishing their hearts out.  Mystery solved.

And now I need a nap.

For those who want to play Rummoli, here are the rules and a picture of the board:

Rummoli can be played by two to eight players on the "Rummoli" playing surface with a standard deck of playing cards (minus the Joker) and counters or chips.

To Start the Game-The players cut the cards to determine the dealer of the original hand- Ace is high. The playing chips or counters are divided evenly among the players. Each player places a counter on each of the nine sections of the playing cover and the dealer deals out the cards, one at a time, dealing an extra hand which is known as the "Widow". Some players may have more cards than others, but this is of no consequence.

After looking at the cards in his own hand, the dealer may, if he so desires, exchange his hand for the "Widow", but must not look at the cards in the "Widow" before the exchange is made. If the dealer decides to play his original hand, he may auction the "Widow" to the highest bidder among the other players, and he, of course, keeps the proceeds.

Any player making an exchange of his hand for the "Widow" must accept the "Widow" even though it should turn out to be a poorer hand than his original hand. The hand which is exchanged for the "Widow" is dead, and not used at all in the play. It should be placed face down so that the cards are not known to any other player.

Method of Play-There are two parts to the game which are described in detail as follows:

Poker Play-Each player selects from his hand the five cards which he thinks will make the most powerful poker hand and lays aside, for the time being, the remainder of his cards face down.

This part of the game may be played in two different ways and the players should agree beforehand which method is to be used.

Method No. 1. The players may arrange to have a "showdown" of the poker hands, each player placing his hand on the table face up, and the player having the hand with the greatest poker value takes all the chips in the "Poker Pot"

or
Method No. 2. The players may bet and raise the bet as in a regular poker game and all bets should be placed in the "Poker Pot". The player who forces all other players out of the game or who has the best poker hand when hands are shown takes all the counters in the "Poker Pot". A player who has been forced out of the betting cannot participate in the Pot even though he discovers later that he had the best hand.

Rummy Play-The players now pick up the cards they laid aside for the Poker Play and arrange their entire original hand in suits. The winner of the Poker hand now places on the table face up the lowest card in his hand calling it aloud. The play passes to the left and the player having the next consecutive card or cards in the same suit plays it or them face up before him. The play continues in this manner until the ace of the suit has been played or until the continuity of play is broken by a card being in the dead hand. When a suit is closed by the playing of the ace or blocked by a card being in the dead hand, the player who played the last card now plays the lowest card in his hand in a suit of a different colour to the suit last played and play continues in this manner until all suits have been run out. If a deadlock occurs, that is if no player is able to change the colour of the suit, the hand is finished and each player must place in the "Rummoli" section a chip for each card he has left in his hand.

Pay Cards-On the Rummoli playing cover there are seven spaces marked with certain cards or combination of cards. As a player lays down one of these cards or sequences he collects the chips on the space marked the same as the card or cards he has played.

The first player to get rid of all his cards collects the chips on the space marked "Rummoli" and this marks the end of one hand. All other players pay the winner a chip for each card left in his hand.

The deal passes to the left and at the start of each new hand each player places another chip on each of the nine spaces on the cover.

At the end of a hand it is quite likely that chips remain on some of the spaces owing to the fact that the cards are in the dead hand, or that no one player held the proper sequences in his hand, or that one player has got rid of all his cards thus ending the hand before another player had a chance to play his pay cards. Such chips are allowed to collect from hand to hand until a player can play the right card or cards to claim them.

To End the Game - At the conclusion of the game the players must decide among themselves how to dispose of chips remaining in any of the spaces. This may be arranged by simply cutting the pack and high man taking all the chips, or dealing to each player a poker hand (five cards) and the best poker hand wine all the chips remaining on the board.

Latest News

Last week was my 3 month check up with Dr. Oehler.  At that time she did another PCR test, which came back as undetectable.  This is fantastic.  It means that the drug is working, and has shut down the production of the BCR-ABL protein (the protein that turns the bone marrow on to produce the malignant white cells).  So my drug is working on two levels: it is stopping the production of the protein AND if any is produced, it is stopping my bone marrow from accepting it.

The bad news?  This is my new normal.  Dr. O was hoping that I would get more of my old self back, but has come to realize that it is almost a year, and this is probably it.  So each day is a challenge in figuring out what I can do, what I have the energy for, and whether I can focus enough to get any work done.  And what kind of medical issues need to be dealt with each day.

We are not discussing changing drugs since the Sprycel is working so well, and each of the TKI drugs has a bunch of side effects, mostly the same as the others, but with some major differences as well.

She also thinks that I am de-conditioned physically from this past year and wants me to take a physical class, to give myself more energy.  So she prescribed golf lessons!  And my fabulous husband was so excited, he paid for them!

The lessons started last night.  I had found a group lesson that meets twice a week for 3 weeks.  I had hoped to take an intermediate class, but the only class available is a "Women's Golf" class, and I was the only one there who had ever hit the ball before.  Sigh.  This is a very very basic class.  But I told myself not to be upset, and that going over the basics can be enlightening.  Each trainer has their own way of describing things.  I have loved one trainer, hated one, and been indifferent to two others.  This one is ok, and she gave me advice worth the price of admission.

The hardest part of playing golf with JR is that he LOVES to give advice.  Whether I want it or not.  And mostly I don't.  I need to figure out how to do this myself, or I won't learn it.  I am the one who needs to make the mistake and then correct for it.  Sadly, this irritates him.  He really really wants to "help" me and tell me what I am doing wrong.  I really really don't want to hear it.  It is one of the few times when we clash.

And then Molly (the golf instructor) said the most beautiful words ever, "Under the rules of golf, giving unsolicited advice is a two stroke penalty."  OMG.  Are you serious????  He isn't ALLOWED to give advice.  That rocks!

She also managed to fix the fact that all my shots go to the right.  I was holding my hands slightly wrong, and then she said, if your feet are lined up with the hole, your shot will go to the right.  Well, I could have sworn that I had been told by virtually everyone to line my feet up to the hole.  And I have a horrible habit of hitting to the right.  It is very discouraging.  But not now!  Now I will line up to the left of the hole.  And go straight.

I am actually really excited about getting out on the course again.  But I think the next lesson tomorrow is on how to swing your 7 iron.  Sigh.  Back to basics is good, back to basics is good, back to basics is good.

Also today, while walking the dog along the Puyallup River, I noticed a little head popping out of the water.  It was a harbor seal.  And then there were two, and then three and then five and then there was a baby pup swimming with its mama.  I stood there fascinated while the dog just wanted to go go go.  Sadly for him, we stayed and watched the seals for while.  I didn't realize that harbor seals would come up into fresh water, although maybe that part of the river is a mix of both, the estuary area, and perhaps there is yummy fishing there.

--Caroline

05-13-11 Happy Times

Last Thursday I had my second bone marrow biopsy.  Yesterday I had the results.  I am a year ahead of schedule (had I been given the older drug, Gleevec) and have reached Major Molecular Response!  This is the milestone one hopes for with this disease.  I still have Leukemia, I still have to take the drugs every single day, and I still have to have my blood tested, a lot.

BUT 95% of those that reach MMR do not progress beyond the chronic phase.

I must caution you, I do everything oddly, my body reacts to stuff strangely.  The real window of happiness will be at the two year mark.  If my body is going to start having mutations or reject the drugs, it will be mostly likely in the first two years.

But happiness all around!!!!

The side effects are still around, life has changed.  And I have the best, most supportive husband on the planet!

Happy Hugs,
Caroline

My post from the leukemia boards

I posted this this morning on the discussion boards at the LLS site: 

Last night when we got home from the onc visit, wherein she told me she was surprised I was still so fatigued, and was I sure I wasn't um, er, perhaps depressed?  Luckily, my husband was sitting next to me and assured her it was not depression, I was too floored to really respond.  (mind you I had gone to her recommended psychiatrist, then her recommended psychologist, and had just had the cognitive testing she recommended--Each of them telling me I wasn't depressed, that my reactions were normal for the situation, and that there WAS some cognitive rehab they could offer for the missing abilities)  Then she recommended physical therapy, again, tears in my eyes, but this time sighed deeply and said "ok, if you think it will help."  And she happily wrote out the referral, talking about how getting some exercise will be beneficial.  But I get exercise, I tried to tell her.  I walk the dog almost a mile a day in the morning, then putter around all day long doing things.  Yes, there is significant couch time, but as soon as I get a breather in, I get back up. 

And then she said if that didn't work, I might want to try Ritalin.  Yup.  Ritalin.  My mouth fell open and I said, really I was lucky enough to have the luxury of being able to slow my life down, husband was picking up financial slack, and I would prefer not to be on Ritalin.  Not an extra drug thank you very much.

And no, she is not just a regular onc, she is a CML expert, doing all kinds of research at Fred Hutch.  Her latest trial is for some add-ons to gleevec trying to isolate and destroy the T-cell that causes all this. 

So back to my story: we get home, and Accredo has not delivered the package of Sprycel like I was told they would 2 weeks ago.  I am now down to just a few pills.  I call them, and although it is after hours, they have someone who answers the phone, looks up my information, and tells me it was never ordered. 

I fell apart.

How can it be this hard.  All the time.  And this is a specialty pharmacy, they KNOW what these drugs are for. 

The nice woman on the phone kept apologizing and said she has reordered it.  I thanked her, hung up and fell on the floor crying and hugging the dog.  Husband came over, crawled over next to us and held me. (he rocks!)

But I called this morning to check up on her.  Turns out she was smoking crack.  It was ordered and supposedly going to be delivered today, not yesterday.  They had the tracking number and everything.  Could see it on the truck, should be here in 45 minutes.

So all of that last night was for nothing!  I told the new person on the phone what had happened and then wished bad things to happen to the first person.  I immediately quantified what bad was (I don't need no more bad karma! --bad grammar on purpose): she should not be able to find her car keys for two hours. 

Person on phone laughed. 

Sigh.

Did I mention I have bronchitis, was treated like a leper at the cancer center, and just about passed out when I was told to take a deep breath and started hacking up a lung.  (I don't mind the leper part, I would never want to make anyone else sick, especially a compromised immune system person).

So, to all those who think this is a walk in the park...............I blow huge raspberries at you, and hope you never have to find out for yourselves how hard this is.

Caroline

04-08-11 Bronchitis

So it is not a cold.  It is asthmatic bronchitis.  And they cancelled my Bone Marrow Biopsy.  Sigh.  Apparently I should be well before they drill me.

JR came home, YAY!!!! it is so nice to be able to just sit back and be sick, and not have to worry about walking the dog.

More later.........I have to go hack up a lung now.

04-01-11 Anniversary and Baking Galore

I have caught a cold.  This sucks.  I was going to catch up on some work, had no clients/appointments/other things to do for a couple of days.  And now I am sick.  Rats.

Today is our third Anniversary.  I stopped for a moment earlier to ponder the idea that exactly three years ago at that precise moment, I was getting my toes done and scampering off to find the groom at the golf course to collect him for our wedding.  It feels like we have been married forever and for five minutes all at the same time.

To celebrate our anniversary, I sent JR a cake.  An amazing cake.  He is on a mission in El Paso at Fort Bliss.  I found the recipe in the latest Country Woman magazine that my mother in law sends me a subscription for.  This is the simplest cake recipe on the planet.  And so dense and rich and moist.  You must try it.  It all mixes up in a sauce pan on the stove top, then pop it in the oven and poof!  Chocolate cake.  With a surprise ingredient.  Guinness Beer.  I didn't make the icing, just put the entire spring form pan in a cake carrier and sent it off to him to share with his buddies.  Of course I doubled the recipe and made two of them, so I could try it before sending it off.  This is an amazing recipe.

Chocolate Guinness Cake

Ingredients

• 1 cup Guinness (dark beer)
• 1/2 cup butter, cubed
• 2 cups sugar
• 3/4 cup baking cocoa
• 2 eggs, beaten
• 2/3 cup sour cream
• 3 teaspoons vanilla extract
• 2 cups all-purpose flour
• 1-1/2 teaspoons baking soda
• 
  TOPPING:
• 1 package (8 ounces) cream cheese, softened
• 1-1/2 cups confectioners' sugar
• 1/2 cup heavy whipping cream

Directions

• Grease a 9-in. springform pan and line the bottom with parchment paper; set aside.
• In a small saucepan, heat beer and butter until butter is melted. Remove from the heat; whisk in sugar and cocoa until blended. Combine the eggs, sour cream and vanilla; whisk into beer mixture. Combine flour and baking soda; whisk into beer mixture until smooth. Pour batter into prepared pan.
• Bake at 350° for 45-50 minutes or until a toothpick inserted near the center comes out clean. Cool completely in pan on a wire rack. Remove sides of pan.
• In a large bowl, beat cream cheese until fluffy. Add confectioners’ sugar and cream; beat until smooth (do not overbeat). Remove cake from the pan and place on a platter or cake stand. Ice top of cake so that it resembles a frothy pint of beer. Refrigerate leftovers. Yield: 12 servings.

I don't know about the 12 servings..........I guess if you gave out little tiny slices..........

Also, the nettles were as delicious as I remembered them being.  Like spinach but better.  I can't explain it.  You just have to get some and try it.  I made a chicken based soup stock, added the nettles, some chicken, some Israeli cous cous, and poof!  Yummy yummy soup.

And then today I have been baking bread. I really wanted some toast, but don't want to go to the store, so thinking that I really do own everything needed to make some bread, it would be silly not to.  So I did.  I used the recipe for no kneading bread that Aunt Fay sent me the book about.  Made two loaves.  House smells great.   I can't wait until it cools enough to have a slice.  

Kate is coming over tomorrow and I shall give her the other loaf.  She loves this bread.  

And I immediately put another batch together in the same bread bucket, so as soon as I am done with this loaf, I can make more.  I don't know why I stopped making this bread, it is ridiculously easy. 

No Knead Bread 

• 3 cups water, filtered and no more than 100 degrees
• 1 1/2 tablespoons salt
• 1 1/2 tablespoons yeast
• 6 1/2 cups flour, AP
• flour, for dusting

Directions:

Prep Time: 10 mins

Total Time: 50 mins

1. 1 Measure water, salt and yeast into a large plastic container with a loose fitting lid.
2. 2 Stir in the flour. Sometimes it is stiffer than others but it should be a wet looking mess when you are done stirring. Do not knead.
3. 3 Put the lid on loosely and let rest for 4 - 6 hours on the counter. Refrigerate loosely covered overnight or up to 10 days. The longer it rests in the fridge the more flavor it develops.
4. 4 On baking day, heavily flour the dough and cut into halves  I bake two pound loaves because we devour this bread. Scoop the dough into a long or round loaf and put into greased bread loaf pans. (you can also bake this on a baking stone in the oven and get more of an artisan look).  I cut the dough in half with a bench knife while it is still in the dough bucket and get a nice oval shape that way.
5. 5 Let sit on the counter for 40 minutes.  Preheat your oven 450 degrees. Put a broiler pan under the loaf pans. Let the oven heat for 20-30 minutes. Heavily dust the top of the loaf with flour.
6. 6 Slash the loaf with a very sharp knife or lame. If your bread is round slash a tic tac toe pattern into it and for a long loaf slash it 3 or 4 times diagonally. This helps the bread pouf up during baking. Put the bread in the oven and  immediately pour 1 cup of hot water into a broiler pan and shut the oven door for 10 minutes. Toss a couple of ice cubes into the oven after the first ten minutes if you are baking a 2 pound loaf.
7. 7 Bake one pound loaves for 40 minutes and two pound loaves for 45 minutes.
8. 8 Cool on a wire rack and please try to resist cutting it until it is totally cool or it will not be crispy on the outside and chewy in the center.

That's enough baking for one day.

Happy Anniversary Darling Husband!!!!

Caroline