You might be wondering about the title of this post. I have received lots of wonderful and encouraging mail while I’ve been here, and today I received three packages! Beth sent me an awesome necklace that is handmade on maplewood and reads “Laughter is the best medicine”. I am definitely an advocate of that school of thought! Before I continue, let me just sidetrack here, while we’re speaking of laughter and fun, and say that they have no hula hoops out here! I’ve been in Bartell Drugs, a children’s store, QFC (a big grocery chain), Safeway…I think I’m going to order one on-line, but what’s up with that?! Is Seattle anti-hula-hooping? Ok, back to laughter…Beth included a pretty quote in the card that I thought you would all enjoy: “At the height of laughter, the universe is flung into a kaleidoscope of new possibilities” (Jean Houston)….isn’t that true? Anytime you’re laughing, the whole world just seems to be a better place….kind of like sleeping. When you sleep well, you can approach life with a better attitude….sleeping and laughter, the two key aspects to living well, by Julie Matthews. In my next package, Katie sent me some yummy gum and “Baby Mama”! I love that movie, and I think my mom will enjoy it as well, and if you haven’t seen it, you should! Pretty funny stuff.

Let’s see…what else…oh yah, I’m supposed to be explaining the post title, aren’t I? Pardon me if my mind seems to wander…I blame it on the chemo. Anyhoo, the third package was from Laura, and in it was a pretty silver necklace that reads “sister” and has a pretty flower on it. I thought, “How pretty and thoughtful”! Then I kept reading and noticed that she had the back engraved…mine reads “The Getter” and hers (she bought the same one) reads “The Giver”. I thought it was just perfect…I will venture to say that no one else has a necklace like this!!! Thanks, Laura!! And thank you Katie and Beth, and thank you to everyone for fillin’ up my mailbox. It makes me feel pretty darn special, and that way I can tell the other residents here that they really need to be nice to me ’cause I have a huge group of people who got my back. Maybe I’ll start saying, “Look at all this mail I have….how ’bout you?!” to the other residents once I see that their boxes are empty. Then I’ll be like, “Oh well, maybe tomorrow” with a sympathetic smile. hahahahahahahahaha Yah, sometimes I can be evil, but you know it’s funny!

So I met with my doctor and team nurse yesterday to go over the protocol and sign some more consent forms. It was a pretty intense meeting because they reminded me of the inherent danger involved in getting a bone marrow transplant. They said I would most likely go to the hospital following my transplant because my counts will be completely wiped out. I asked them why I would have to go to the hospital because my counts have been wiped out several times previously, and I was able to return home and be treated as an outpatient. This is how they explained it: Once my counts are knocked down this time, they will not grow back. I need Laura’s cells to recover. I will also be on immunosupressant drugs to prevent GVHD, so all these things combined make me extremely vulnerable to infection, and infection can be deadly. In that aspect, the meeting yesterday had me worried because the transplant draws nearer and nearer. I feel so well now, I can’t imagine feeling so poorly that I have to go to the hospital. After leaving the clinic, my worries lessened a bit. Having the opportunity to get around the town and be part of the general public lifts my spirits greatly when I feel down or worried. Talking on the phone helps too. That way I can hear about the everyday events that I was growing tired of before I relapsed…things that I miss doing now. I just keep telling myself to go with the flow, and whatever happens is what’s meant to be. I plan on fighting with everything I got (note the picture of my boxing gloves on my bedroom wall….if I need to use them, I will!!), and having you all support me makes me strong and happy (are you sick of me telling you that?).

Plus, I’m going to share something private with you…no, nothing gross like my 24-hour urine collection, but rather a list I’ve started. I started it when I was in remission (in October of last year) after reading a news article about a 75-year old Fairfax man who took up piano four years ago and made George Mason University an all Steinway university (Steinways are like the BMWs of pianos…well-built, reliable, kinda fancy…the best of the best). He had wanted to learn piano since he was young, and included it on a list a teacher asked him to make in college: “25 things I want to accomplish in life”. Sooooo, in addition to my trip to Ireland and hanging out with all of you, here is a list of what I would like to accomplish…maybe you’ll want to make one up too! I haven’t finished it yet…I don’t want any wish to be silly, so I need to concentrate…could take me years to finish the list! So, here goes:

1 - Fall in Love

2 - Marry

3 - Have at least 3 children

4 - Learn German and Italian

5 - Travel (oh!—-so many places!)

6 - Write a book

7 - Walk a marathon

8 - Own a house and car

9 - Landscape a beautiful yard

10 - Make at least one new friend every year

11 - Become an accomplished cook

12 - Learn to dance country, salsa (I can kinda do it now, but there’s always room for improvement!), ballroom and swing

13 - Do a TNT event every year

14 - Throw dinner parties

15 - Volunteer in my community

16 - Learn a new song on the piano each year

17 - Volunteer with my pets in the hospital

……and I’ll work on the rest. It makes me feel good to refer to this list when I feel worried or down. I feel in my heart that I will accomplish all these goals, but it’s still very frightening to face the possibility of death. No one knows what will happen. And when (not if ) Laura’s marrow becomes mine, I will constantly worry about another relapse, but I will start on my wish list, and I will find something to smile about every day. If I ever forget to do that for some reason, please remind me!!!!!!!

For many, today, September 11th, is anything but a happy day. I felt guilty because I totally forgot about what day it was until my mom reminded me on our way to one of my appointments. I can’t believe seven years have passed. Ronnie, I know it’s something you think about every single day, and I wish I could take away what you experienced that day, but I know that’s impossible. I love you, and I am thinking of you today, in addition to those who lost their lives and their loved ones. Here’s a quote I found that seemed appropriate for this day: “I love the man that can smile in trouble, that can gather strength from distress, and grow brave by reflection. Tis the business of little minds to shrink, but he whose heart is firm, and whose conscience approves his conduct will pursue his principles unto death” (Thomas Paine). So, kind of as we do when facing any trauma or serious illness, we keep putting one foot in front of the other , we smile to help give ourselves strength, and we remember the losses we’ve incurred to help give meaning to our lives and how we live them.

And, of course, we pick things to look forward to! I, personally, can’t wait to see Paulina in a couple hours! She’s coming out here to visit, and she will stay until Sunday. The weather is supposed to be gorgeous, and I’m really looking forward to showing her my ‘hood.

Before I sign off, I wanted to include something a little lighter…a funny story that involves my mom (imagine that!!). To all you nurses out there who went to training with my mom, how did you do it?!!! She’s a bit of a troublemaker in the classroom! We had to attend a couple classes about home care, nutrition, etc. The other day, we were in a class talking about the role of the caretaker and the patient. At the end, our teacher gave us some situations to hear what we thought about them. Here they are:

****************************************************************************************************************

Scenario 1:

Dorothy has been out of the hospital for one week. She goes into the clinic twice weekly. She spends a lot of the day sleeping or staring out of the window. Peter (her husband) has made suggestions for outings, exercise, conversation, and movies, but she says she isn’t interested and is just fine being at home. When they go into the clinic, Dorothy tells the doctor and nurses that everything is fine. Peter doesn’t think everything is fine. He worries that she is losing ground, is depressed and wants her to seek counseling. Peter misses her companionship and wants her to get back to her usual self.

Scenario 2:

Rita is taking care of her mother, Julia, after transplant. She is doing fine. Rita is going crazy. Rita misses going out and feels the walls of the hospital/apartment are getting closer and closer. She feels guilty to leave her mother and enjoy herself. What strategies can she use to cope with those feelings?

***************************************************************************************************************

The teacher asked us questions like “Is Peter being unreasonable?”, “What do you think Rita can do to overcome this feeling?” to which my mom yelled from the back of the room……..”Rita should call Peter so they can go out!!!!!!!!” hahahahahahahaha I was proud that MY mom was the one to lighten the mood and get everyone laughing. She has a talent for that, and it makes her an extra-special caretaker (and mom!). But still, if I had to take classes with her all the time, I’m sure I would get in trouble! I bet there are lots of stories from all you nursing classmates…do tell!!!

Finally, I’ve included pictures, both new and old today. My cousin Mike and his family, as well as my Uncle Bill and Aunt Nancy worked hard to put a CD of pictures together for me of our family. I thought you’d get a kick out of seeing some of them. Hope you enjoy!

Love from Seattle.

Haaaappy Tuesday everyone!!

Well, I would have written sooner, but I’ve been fighting a little bit with the blog—I made a couple errors trying to put up the pictures, and once all is said and done, basically I’ve been working on this blog for about five or six hours (stretched over a couple days). Yes, there were times when I just wanted to quit and say, “no pictures for you!!!”, but I really wanted you to see them because I had a wonderful weekend with my parents. My dad came out on Thursday, and the weather was gorgeous the entire time he was here…hot even! I guess September is one of the very best months to be here in Seattle. The forecast for the week is all sun!! Who said it always rains in Seattle?!!!!

First off, I have to submit a correction to my previous post where I wrote that Cyclosporin “disintegrates”…my mom pointed out that I misheard…I could swear the pharmacist said it would disintegrate after two hours exposure to air, but my mom thinks she meant the potency of the drug would be affected…disintegrate, decrease in potency, same thing!!! But maybe just to check, I’ll leave one out to the air once I start taking them. hahaha

In other medical news, I had to do a 24-hour urine collection last week….boy, was that fun! Luckily we found a good day when I didn’t have to go out too much, because everyone who knows me knows I have to use the bathroom every five minutes…OK, not five minutes, but you get what I mean. I was so relieved to hand that jug in (ewww, it’s so gross. It’s kind of embarrassing handing it over, even though they do this all the time). I found out my spinal tap results, and it was clear, as were all my scans…wooooohoooo!!!!! Unfortunately, I do have three cavities though. I am fanatical about my teeth, so I was pissed to hear this, but I think not flossing, using my stimudents or brushing with my Sonicare toothbrush these past months definitely contributed to the cavities. Here in Seattle though, they encourage flossing as well as using a normal (soft) toothbrush, as opposed to a foam one. They said that a small amount of bleeding is OK, what’s important is that I get the bacteria out from between the teeth. I was so excited to floss last night!!!! I feel like a new woman.

My dad arrived Thursday morning, and after dropping off the urine collection (again, ewww), we took him to dinner at Joey’s, one of our new favorite spots, located right on Lake Union. As you can see from the pictures, it was another beautiful day (I’m beginning to think everyone lied about Seattle so tourists stay away because it has been absolutely gorgeous!!!). Friday, I had stuff to do at the clinic, and while my dad and I were upstairs in the waiting room, my mom snagged us Mariners-Yankees tickets from the volunteer desk (every so often, people donate tickets). I was super excited, but as the day wore on, my headache got very irritating, a 5 or 6 on a scale of 1-10. Sadly, we decided that a game probably wasn’t the best thing, and we opted for a low-key dinner at “La Spiga”, a delicious Italian place about two or three miles from our place. By the way, all food in Seattle has been good!

Unfortunately, after our delicious Italian food, somewhere between the restaurant and the car, I stepped in poop (maybe dog, but I’m honestly not sure ’cause there are a lot of homeless people in Seattle…more than any other city I’ve ever seen)….I was wearing my new Vasques (a low-top hiking/walking shoe), and of course, there are lots of grooves and crevices in that type of shoe. I can’t even describe how disgusting the ride home was—we thought it was coming from outside, so we all put our windows up, and then I discovered the awful truth. Luckily, being immunosupressed is in my favor in these situations, because clearly no one expects me to clean up poop on my shoe or in the car!! My mom and dad worked very hard to get it out of everywhere, because it’s obviously extremely dangerous for me to have any contact with it. My shoes were meticulously cleaned and are like new, but all I could think of that night was (assuming it was dog poop) “People have no idea how their laziness affects others!” For anyone, cleaning this up is a nuisance, but for me, it’s a danger to have it anywhere near me. So if anyone out there isn’t picking up after your dog pooping in the sidewalk (or God forbid, if it’s you pooping in the sidewalk ), shame on you!!! Please feel free to pass my feelings along to whomever you’d like.

PS We went back to the location of the incident, and looked over the sidewalk for poop. My dad spotted it just on the curb, where one might step while getting into his/her car…knowing where it is made me more confident while walking in the area, but alas I had no feeling of peace because the person who did it was not punished.

Wow! I didn’t realize how much I needed to get that out! It felt good! All right, what else other than stepping in poop…On Saturday, my mom, dad and I went to Port Townsend, WA, just a drive, ferry boat ride and drive again away for the wooden boat show. It was again a gorgeous day, and you can check out the pictures below to see for yourselves just how much fun we had!!! One funny thing my mom and I noticed on the drive over…we were in the middle of nowhere, WA, and we saw a sign for “Graves Excavating”….I started cracking up. I don’t know about you, but I think they should have thought of a different name…pretty much anything involving “graves” and “excavating” doesn’t seem to go well to me. The highlight for me from the boat show was a beaten little red canoe named “Bijaboji”. I don’t know why I stopped to look at it, considering the beautiful yachts and sailboats casting their shadows over it, but I did. In 1937, Betty Lowman Carey, rowed her little red canoe from the Puget Sound to Alaska, alone. Apparently no fishermen woud let her aboard their boats to go to Alaska because she was a woman, so she decided to take her canoe. She planned on visiting her dad in Alaska. Pretty amazing story, huh? Apparently there is a book about it, “Bijaboji, North to Alaska by Oar”…should be interesting! My dad appreciated all the boats, but he was really excited to go aboard “Shamrock”, one of the yachts, and a boat that was built in Annapolis, MD in the 60’s…I can’t think of what it’s called, but this type of boat is very well known. It was certainly luxurious as you can see in the photos!

On Sunday, we decided we wanted to go up and see Mount Rainier. Let me just say that if you ever feel like doing this, do all your research before hopping in the car with a couple guidebooks, some maps and a general idea of where the mountain is. We enjoyed a beautiful car ride, and we did indeed get fairly close to Rainier. We drove to Carbon River. Ironically, our clearest views of Mount Rainier were when we were driving back to the city and it was in the rearview mirror. It was a lot of fun though, and we did have a bit of an adventure when we decided to stop for some food at the “Carbonado Saloon”. This link will give you a better idea of the place than perhaps my words can render: http://carbonadosaloon.com/ . The signs for the place were all over the road, so we figured it would be a nice bar and grill or something, but no siree, this is a SALOON—the only thing they were missing were the two flapping doors when you walk in. When the three of us walked in, all prepified (I just created that word…it means “looked like preppies”…you like it?!) and innocent-looking, everyone (all eight of them) just stared. I walked to one long table and asked if we should sit there, and one lady said “no”…they pointed to another table in the middle of the bar, and then a customer pointed to a round table in a separate room (and only this table was in the room—it was kind of like the fish-bowl seat you get when you’re in the window of a restaurant), suggesting we sit there.

We were more than happy to put some distance in between us, so we headed over to the round table. I’m pretty sure we were all thinking the same thing: this does not seem like the kind of place I should be when I’m neutropenic!!! Good thing I’m not. There were dirty, dusty relics from ages ago, the table was deeply carved with names of past customers and regulars, but this seemed to be our only option. We pretended like we were totally comfortable being there, but none of us was at ease. Pretty soon, more customers started showing up. A couple of them rested their horse bridles on a post in the corner….”what the?!!!!”, I thought. I felt like I was in a different country. I tried to casually watch the townies, but I’m sure I was probably staring. They fit felt poker tables over the wooden tables, and soon a couple poker games ensued. “Is this really happening”, I thought? I mean, it looks like fun, but riding your horse to a bar, and leaving him outside while you play poker is just weird to me. Anyhoo, you’re probably tired of my description. Needless to say, it was an interesting experience. I felt so relieved to get out of there. I’m sure they were all laughing about us too, but oh well!! It was seriously like something out of an old western.

Driving out of the town, there was a man walking with his two children and his rifle over his shoulder, and then further down the street one dog started attacking another dog that was passing by….I was glad to get back to the city life. I love the outdoors and adventures, but I think of that more as being one with nature, relaxing, getting good exercise by hiking, not spending time with people who scare me a little bit.

And speaking of the city, the other night my mom and I watched “Sleepless in Seattle” with the lights of downtown Seattle shining in the background. I love that movie, and it seemed just like the appropriate thing to do once you arrive in town…a classic.

OK, it’s getting late, and I’ve still got to put the descriptions under the photos. You better appreciate this post, damnit, ’cause it took lots of sweat (literally, it’s really hot in here ) and hard work to finish it. But I taught myself several lessons about the format of the blog, so I guess I’m better in the end….at least that’s what I keep telling myself.

Before I go, I just wanted to say “welcome to the world” to Evelyn “Evie” and Clementine “Clemy”!! My friends, Katrina and Ashley both had their daughters within the past couple of weeks and everyone is doing well. The babies are beautiful…I can’t wait to meet them!!!! Gosh, they’ll probably be walking by then! Crazy. Well, meeting them is something I will certainly look forward to.

All right, I’m done now. For real. Thanks for reading everyone (and praying and for your support, etc, etc)

Sending lotsa love (and lots of pictures!!) from Seattle.

First things first. I’m still in remission!! I finally got my bone marrow results today (from the aspirate done on Thursday), and it looks good!!! My counts started coming up on their own. Monday my white count was 2.43, neutrophils 1.26, hemoglobin 10.9, hematocrit 32 and platelets 100,000. Woohoo! I mean, I have lots of room for improvement, but I’m happy with those! I firmly believe the red wine I’ve had the last several nights has helped my hemoglobin and hematocrit…red cells AND red wine…all that red? Coincidence? I think not! Also, I’m looking forward to plucking my eyebrows now that my platelets are high enough! Oh, and PS, my cholesterol was 132….aren’t you proud, Dad?

I haven’t gotten the results to my spinal tap from yesterday, but the procedure went well. I’ve never had one before, and the only part that felt slightly uncomfortable was when she stuck the needle in to numb up the area. Today I had a MUGA scan to look at the function of my heart (which looks good!–within normal range), a CT scan of my pelvis, abdomen and chest (for one of the research studies I signed up for), a gynecological appointment (always fun! hahahaha), a meeting with my pharmacist, a meeting to have dental X-rays, AND a meeting with my nurse, Jackie and physician’s assistant, Pam. Wow…I feel tired just reading about all that. I had a busy day!!

The appointment with my pharmacist was much more intimidating than I anticipated. She gave me a huge container for my pills (maybe 10″ long and 5″ wide), so I can organize them every week…it looks like something you’d give someone who can’t see very well. Then she started describing all the meds I would be on. I knew there would be a lot, but I was certainly not prepared for everything she told me. She had a binder that included the actual pill and then a description about how and why it’s used in the transplant process. Well, when we got to one of the pills, the mother of all pills (Cyclosporin), I got even more scared. It even looked sinister. Each huge gray pill is packaged separately in foil wrapping. Once you unwrap it, you must take it before two hours pass or it will disintegrate in the air (um, whaaaaaat?!). There are many possible side effects, one of which is a really bad headache…but when she says “really bad”, she means dizziness, blurry vision, tingly fingertips…things I definitely don’t want to experience!!! I know, keep thinking positive thoughts, and I am, but when you’re overwhelmed with information and possibilities, it takes a while to reorganize everything in your head so you can look at it with a clear mind. Oh, and another thing with the meds….some of them must be taken on an empty stomach (with one of them you shouldn’t eat anything within two hours of taking the pill), and others say you should take them with food! It’s going to be interesting.

Speaking of food, I wasn’t allowed to eat before my first couple appointments this morning because of the scans.

I did however, enjoy the wonderful barium drinks (two big ones!) within an hour…the contrast highlights certain parts of the body when they do the scan. Let me tell you, that “berry smoothie” as it’s described on the bottle, is no smoothie! Have a look at the pictures I’ve included, so you can more accurately understand what it tastes like…a picture’s worth 1,000 words, right?!

OK, well I’ve got a pretty irritating headache (but no worries…I’m not dizzy or blurry-eyed or anything!), and I’ve had a long day (I think that’s why I have the headache!), so I think I’m going to get ready for bed. Hope everyone is doing well!!

Love ya.

It’s another beautiful day here (as you can see by the cool link Ronnie put up on my blog for the Seattle weather)! I think I’ll let this post serve more as a photo essay because there are lots of pictures in it. We obviously enjoyed our weekend (I didn’t have any appointments until today!). We got a rental car (a nice, comfy Chevy Impala), we hung out at Lake Union and took a boat tour (we even saw the “Sleepless in Seattle” houseboat—-see photos for great shots! Sorry, but Tom Hanks wasn’t available to pose on the porch for us ), we enjoyed coffee at our favorite place, and I finished an entire package of those awesome candy pumpkins that they sell in the fall, you know, this kind: http://farm1.static.flickr.com/25/55260249_9312eb6a82.jpg …my stomach was happy, but I don’t think my teeth are. Oh well…how often do I indulge in that, right?!

Anyway. it was a wonderful weekend as you can see by these pics:

I especially enjoyed walking around the lake yesterday afternoon/evening. I love the hollow sound of the docks as you walk over them, and the swishing of the water against the posts. Dad, we found a place that specializes in wooden boats–you’ll love it!! Also, the water tour we went on served floats! I can’t remember the last time I enjoyed a coke float! Apparently they specialize in a chocolate ice cream root beer float…I’ll skip that ’cause I’m no root beer fan, but for anyone who wants to come for a visit, you can put that on your list of things to look forward to (other than hanging out with me).

When we were walking through “Barnes and Noble” today, I noticed a picture book (of dogs…what else?!), where the pictures matched the words to “Desiderata”, a poem by Max Ehrmann. I feel like I’ve seen this poem elsewhere, like in the forwards that also attach pictures of animals to match the words of the poem…anyway, you’ve probably read it before, and you may even think it’s cheesy, but I thought it was really nice. I think we all need a little reminder every now and then of how to view different aspects of life. As I’ve written before, any serious illness/disaster brings with it a greater power to philosophize, and I think I’m becoming quite the expert at it (well, I’m the expert and I also know how to steal other people’s words)! So here’s the poem.

Desiderata

Go placidly amid the noise and the haste,
and remember what peace there may be in silence.

As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even to the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons;
they are vexatious to the spirit.

If you compare yourself with others,
you may become vain or bitter,
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.
Be yourself. Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful. Strive to be happy.

I think he forgot to write “and don’t forget to hula hoop!” hahahaha

OK, well, I’ve gone on and on once again. Once things settle down, my posts won’t be quite as overwhelming, but fortunately, in between doctor’s appointments, we’ve been able to really enjoy the city this past week. I’m going to miss Laura when she leaves this week, but I know she’ll be back in a month, and we can keep plowing ahead with this whole transplant thing. Keep thinking those good thoughts!!

Oh!  One more thing.  Ronnie found this video on the Fred Hutchinson Cancer Center’s website…notice that Dr. Appelbaum is featured in it!!

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Lotsa love to everyone.