Julie’s Blog

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:

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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?

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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!!

Get the latest Flash Player to see this player.

Lotsa love to everyone.

Happy Friday to all!

Before I forget, I created a new page titled “My Schedule at SCCA”, so you can refer to it whenever you like. Details are subject to change, but I’m thinking good thoughts and hoping that all goes exactly as planned, I get the transplant October 7th, breeze through the recovery and engraft those beautiful cells Laura is giving me. OK, it might not be quite that easy, but there’s certainly nothing wrong with visualizing the ideal, right? I have so many conflicting ideas about the transplant and the outcome. I mean, I’m thinking positive thoughts, but I have a bit of a hard time dealing with the overflow of medical teachings and information coming my way right now. I am a right-brained person. I deal well with emotions and ways to distract myself from worries and fears. Signing consent after consent form for research studies, reading/talking about the possibility of a positive outcome (i.e. cure) following tansplant and the possibility of a relapse…it is all overwhelming. I am managing my fears by educating myself more, but I still feel most comfortable in the relatively ignorant-talk-about-your-emotions zone. Some people prefer science-based information, but I typically say, “give me all you got about alternate ways of dealing with a health crisis…give me the medicine, but don’t tell me too much about it….I’m about the walking-yoga-talking about your feelings-and laughter-type medicine.

Spending time in any oncology office presents you with a different take on illness, pain and life in general, but to understand what you see at the Hutch, multiply the visual of illness and pain in a typical oncology office by 100. I sat in the cafeteria waiting for my mom the other day, and when I looked around, I saw some employees of the Hutch, but I also saw lots of families dealing with probably the most difficult crisis they’ve ever faced. There were lots of bald lunchers, several who were “moon-faced”, one young teenage girl in a wheelchair being fed by her mom (or I assume it was her mom). I watched all this while I sat there relatively unaffected physically (on the outside, anyway) by cancer. It made me sad for what so many people must deal with, and it made me scared for what I might have to face soon. Other than my head and neck-ache, I feel pretty darn good right now, so it’s hard to imagine myself feeling as tired or sick as lots of these patients I see each day. I am still hopeful that I won’t feel too tired or too sick…I’m working on my visualization! There are photo boards with pictures transplant patients have sent in over the years, so I try and focus my thoughts on them, and of course on you, Andrew, my ultimate transplant inspiration!

Here’s a funny story you’ll enjoy…but only if you share the sick Matthews’ humor: our first day here, we met a lady in my apartment building. I told her I was here for a transplant, and she said “Oh, I had one…and then I went crazy!” Because she went crazy, she had to have brain surgery….and THEN she said she’s been here since January!!!! She finished off with telling us that she was basically receiving maintenance care, that there was no hope for a cure for her. Well, needless to say, she wasn’t an upper to talk to, so I don’t think I’ll be searching her out for any advice!!! It’s funny ’cause we’ve seen her a couple times at the clinic and each time, my mom whispers “Oh, look who it is!!! She’s coming our way”. Nice, Mom…way to make fun of a cancer patient!

By the way, another thing before I forget…I’m a terrible e-mailer again (but I still have the cancer card to pull out…at least it’s good for some things!). I love reading them all, and I will get back to you soon, but I just wanted to thank you for all the well wishes and thoughts. They mean so much to me.

I forgot to mention yesterday that the doctor told Laura she’s an “exceptional donor”. Her hematocrit is higher than the average female, and she’s in excellent shape. He said that I am very lucky to have her (as if I didn’t already know that! ), and he has a good feeling about the transplant. Of course, he can’t give any guarantees, but I keep reminding myself that a highly educated cancer specialist has a good feeling about my transplant…that’s good enough for me!! Laura is working hard out here, not only by going to all the meetings and appointments, but also by taking care of my mom and me. She straightened the apartment out, made lists of things we needed, shopped for those things (along with my mom), is creating a packet for visitors so they know how to get around Seattle and what they can do in the area, she brings us coffee, makes my lunch and she’s keeping us laughing (among many other things). She also brought lots of DVDs to keep us entertained. Laura, thank you for everything you’ve done for both Mom and myself. You’ve certainly helped make this a smooth transition.

Mom, I kind of made it sound like you’re not doing anything which is definitely not true!! Thank you for taking care of me, for comforting me, for sleeping in my room at night (yes, I’m 30 and I asked my mommy to sleep with me when we first got here…I think the feeling of wanting your mom when you’re not well stays with you forever). Thanks for accompanying us everywhere, for the lunches and dinners and, well, just everything. Most importantly, thanks for putting everything on hold to come out here and be with me the next couple months. And sorry if I embarrassed you yesterday by wearing my “Willie’s Wee-nee Wagon” t-shirt to the clinic.

Let me explain. The shirt reads “Willie’s Wee-nee Wagon, We relish your bun”, and it’s from a delicious hot dog/sweet tea restaurant down in Georgia, near where my Aunt Ellie et al. live. Anyway, the shirt makes me laugh, so I wore it to the clinic. After the nurse (yup, nurses do the bone marrow aspirates and biopsies here!) did my bone marrow, he said “I just have to ask you one thing: where’d you get that shirt?”, so I explained, and he said that he liked it. Well, we just called right down to GA and Laurel said she’ll pick one up for us! He did such a wonderful job, and I think he’ll get a kick out of it.

Today they did a pulmonary function test on me to make sure my lungs are doing what they should be, and everything turned out well. On one of the tests, normal is 75%, and I got 62%, but she did a calculation to account for my anemia, and it came out to 80% or so. Go me! I was surprised by how tiring the tests could be because you really have to push your breath as best you can…I’d love to see how Michael Phelps performs on that machine!

Speaking of tests, I won’t get my bone marrow results until next week (Wednesday, I think). That’s pretty annoying because at home, I get the preliminary results the same night, and then the main results a day or two later. There are certainly some frustrations when dealing with such a large treatment center. I also don’t get my CBC (complete blood count) unless I ask for it, and I definitely can’t get it right away.

One great benefit of such a large medical center is the vast amount of resources they offer. My social worker asked if I would be interested in being matched with a volunteer in the area to help show us around and teach us about Seattle. Of course, I said yes! I found out today that I actually have two women who have been assigned to me. They are both in their thirties, they love doing outdoor activities, and…………..they have dogs!!! One of them has two pugs and the other has a lab/greyhound mix, if I remember correctly. I am so excited about meeting them, and I know they will help make our experience here special.

This has been another long one!!! I hope everyone is doing well. We have the weekend off, so hopefully I’ll be able to be out and about having fun new experiences and taking pics for you! I gotta enjoy every moment before treatment, right? Hope you enjoy the new pictures I put up!

Hey there! I’m not going to be writing too much tonight, ’cause I still have a very annoying head and neck-ache, plus it’s 11:30….and I’m sick of looking at the computer after fighting with it a little bit to get these pics up. I just wanted you to see the ones we have so far.

All is going well. I had a bone marrow aspirate done today, we met with a dietician, and I had my blood drawn. I don’t know my counts yet, but hopefully I’ll know tomorrow. I feel like I need blood again already ’cause they took 16 tubes of blood today, plus some of my marrow. I’ll live, but it was a lot of blood!! (hmmmm….maybe that’s not the best choice of words considering the situation )…seriously, we Matthews have the sickest sense of humor!

OK, I’ll write more tomorrow. I’ve got to get to bed so I can get some relief from this head/neck-ache. I’m looking forward to tomorrow being another good day, and hopefully I can get rid of the aches!!!!

Hope you’re all doing well!

Lots of love from the west coast….which is gorgeous, by the way. I really love this city, and I’m loving the city life…I’m enjoying everything before my movement is more restricted. I’ll be taking lots more pics, but I won’t overwhelm you like tonight. Hope you enjoy them!!!!

Hi there! I have so much to say, so let’s see if I can get it all out right now…hello?! You still there? Or did you read that I had lots to say, and just close out of the blog! Don’t worry, I’ll forgive you…but I’ll know whether you read or not by the questions you ask me?! hahahaha just teasin’. I’m sitting here, trying to type with really long nails…come on, platelets, please hit 100,000 so I can cut my nails. Seriously, how do women function with long nails? It drives me craaaaaaazy.

I’m having some issues with downloading the photos, and I don’t have the energy (or the patience, really ) to deal with it tonight, so you’ll have to wait in suspense. Let’s start with my last day in VA. Sunday morning, I finished packing and doing some last minute things and I got in a couple frisbee throws with the pups. In the afternoon, Paulina, Jack, Rachel, Lori and Tim came over to hang out, and we enjoyed a delicious steak dinner with my favorite veggie, asparagus. Around 3:00 or so, Ronnie told me we had to get going because traffic was bad. My heart skipped a beat, and soon the tears came…well, not just tears, but sobs. I knew they were in there waiting to come out after weeks of dreading the moving day (even though it’s only for 4 1/2 months, I still consider it a move!). Gradually everyone made their way out of the house and into the cars, but I stayed a minute longer to give Jameson and Guinness extra hugs, and to try and get through to them that I would return (no, I’m not crazy, but like many people, I talk to my pets as though they could understand everything I say, hoping someday they might answer….hahahah, just kidding about the last part. Then I really would be a little crazy!!). It was incredibly hard to leave the house and to see them peering at me through the door and then the window as I climbed into the car with all my gear.

I tried not to look back too much, and as we drove out Oakshire, my mom pointed out balloons and yellow ribbons on our neighbors’ mailboxes. The balloons read “We love you”, and I figured it was just something those two neighbors decided to do on their own. My mom turned right out of our street instead of left, saying she wanted to give me another tour of the neighborhood on our way out. I looked around, and there was a yellow ribbon on almost everyone’s mailbox. Some had ribbons on each fencepost, some had them on trees, but they were everywhere! I was incredibly touched and surprised, and I was reminded of my incredible support network. We had a caravan of cars taking the “tour” (my fam in two cars, Lori and Tim, Paulina and Jack and Rachel), and we drove down every cul-de-sac to see the beautiful ribbons. When we got to the bus stop area, my mom looked over and said “What’s going on down there?!” I’m a little slow, so I said, “I have no idea”…as we pulled closer, you could see balloons, signs cheering Laura and me on and many, many neighbors all gathered to wish me well. I just couldn’t believe it…all these people are here for me (and my family?). Of course, the tears streamed down again, but they were happy mixed with sad…happy that so many people came out to wish me well and sad that I was leaving them all. Mrs. Bruce, thank you so much for organizing that. It helped to change my attitude that day. It was a “Pollyana” send-off, as my mom says. I talked with as many neighbors as I could, and Mrs. Butler said a beautiful prayer for me and my whole family. Neighbors also brought their dogs sporting yellow ribbons on their collars…everyone knows my love of animals, and for a long time, I took care of many dogs in English Hills (our neighborhood).

The time came to leave again, and the tears started once more. We finished our tour of English Hills, and started on our way to BWI. “Here we go”, I thought. “This is not a practice run. I’m leaving Virginia until January”. We took two separate cars to BWI, and hit no traffic (Ronnie only used that as a way to get me out of the house early for the party!). We arrived too quickly, and I said goodbye to Dad, Katie, Ronnie, Kathy and Tiso. Again with the sobs, but it felt good to get it out. I know everyone will come and visit, but leaving for medical reasons obviously makes any long trip much more emotionally laden, and I felt scared and sad.

We upgraded our seats to business class, which was super-comfortable, especially for such a long trip! After being in the air for a while, Laura and my mom pulled out beautiful notes you all wrote me, and I just couldn’t believe it. Katie, you can never understand how much I appreciate you organizing that. It distracted me for a long time on the plane; I was crying and laughing, and I was again in awe of the support network you all created for me. Thank you, thank you, thank you. Between the notes, watching Jim Gaffigan and “the Perfect Murder”, it was a wonderful ride over to Seattle, despite the purposes for traveling. Katie gave me a “lucky egg” that turns into a lion (kind of like a transformer) to represent strength in the journey ahead. But it has a double meaning: I love the movie “Cool Runnings” (one of my favorites), and if you’ve seen it, you might remember how one of them carried around a lucky egg in his pants, and he asked all his teammates to kiss the lucky egg before heading off on a run in the bobsled. I now have my own lucky egg, but I’m the only one allowed to kiss it (sorry, but when your counts are low, you can’t be too careful!!). I’m carrying it around in my purse.

Things are going well here in Seattle. My apartment is great, and I love the views, as I mentioned in my previous post. We went to the Hutch yesterday to meet with part of our transplant team. Laura and I both had our blood drawn and had physicals. In between appointments, we met a lady who reminded us of a close family friend, Mrs. Hampshire (and another animal lover!). The lady attracted our attention because she was walking around with a service dog, an adorable Havanese/Yorkshire Terrier mix named Sasha. Laura and I of course asked to pet her (the dog, not the lady), and started talking with her owner. Turns out this lady must be another one of those angels in disguise whom we’ve met over the last few months. She gave me her name and information, and said she’d be happy to come visit with us whenever I wanted so I could get in some good quality canine time. I will definitely be calling her, and I’ll put up a picture of Sasha whenever I can…she is such a cutie.

We had a delicious lunch/dinner at “Pink Door” down near Pike Place Market yesterday. Oh, by the way, my counts yesterday were more what I expected to see. My hematocrit was 24, so I got blood today. My neutrophils were .96, and my white count was 2.something…in any case, it wasn’t 15 like it was the other day…that was weird. So my counts still need to go up, but all in all I’m doing well. I had a pretty annoying anemia headache Friday through now (even though I got blood this evening, it doesn’t get better right away). Anyway, they said I can still go to restaurants, as long as it’s in the off hour. This is different from home because at home, they consider anything below 1.5 neutropenic…here in Seattle, they say anything under .5!!!!! Crazy, huh?! They of course ask that I be extra careful being around lots of people right now, but they don’t seem to limit the patients as much as they do back home.

We went back to the Hutch today so I could meet with a finance specialist and a social worker (Laura and I each met with her). We also had chest x-rays to make sure they’re clear, just part of the work-ups. Then we met with the doctor on the rotation for my team (the red team) right now. Finally, after that, I went and got some blood, so it was a busy, long day today, but the wonderful thing is that we did all of this in one place! The Hutch is so incredibly well organized. As part of my transplant team, I have a specific financial specialist, nurse, social worker, physician’s assistant, nutritionist, scheduler and pharmacist. The attending physicians rotate each month. This way, they dedicate all their time to either clinical appointments or research. Fred Hutchinson Cancer Center is a teaching institution, and research is incredibly important. I just signed a bunch of consent forms today, giving them permission to use my experience and my blood supplies to help future patients. Research is so important for medicine, and I know the treatments for me have gone so well because of patients before me who agreed to be part of research studies. You’re probably thinking, “what do you mean they went so well? You relapsed!!!” . You know what I mean though. My experience has been relatively comfortable compared to what patients dealt with years ago (knock on wood!).

Anyway, this is ridiculously long, so I’ll just say a litle more before signing off. The night before I left Virginia, I talked with Ronnie about what lies ahead. Everyone else was asleep, and I was on my way to bed, but then the tears started, and I knew I had to get some of my feelings out. Ronnie knows so much about the medical aspect of the transplant process and leukemia in general, and I know he will never just say “don’t worry. You’ll be fine”. I got out all my worries, and he helped me work them through, even making me laugh!!

Sometimes I think I’m too selfish with my feelings. I know, I should be allowed to be selfish right now, but I am only recently thinking more about how my family and friends are affected by this whole process. I can’t help but feel annoyed when I feel like everyone is constantly watching me and asking “Are you OK?”, “Can I get you anything?”. I feel grateful but annoyed at the same time, I guess. Then I feel guilty for feeling irritated. I’m pretty sure this is how any patient would feel in my situation, but I have to remind myself of what they are all going through as well. To my fam, I know you all know how much I love you, but I still feel like I need to say that I appreciate everything you’ve done and are doing for me. I apologize in advance for my irritability and frustration. And I thank you in advance for all the things you will bring me when I’m not feeling well….every lemonade, hot chocolate, bottled water, crackers, etc.

All right, my fingers are hurting, so I’m off to take care of some paperwork before bed. I know this is a long post, but read up! There will be a quiz on the blog, and the winner will get…um…let’s see…they will be awarded a phone conversation with me! Yah, I’m in high demand. hahahaha

Hope everyone is doing well!!

Morning, everyone!

I know, I know, it’s not morning…it’s 12:30 PM Pacific Time, and we’re just eating breakfast. We went to bed at 1 AM Pacific time, so it was quite a long day! It was a wonderful day, surprisingly…I’ll tell you more about all that when I write again. I best get my butt up, shower, and start getting my apartment in gear (along with the help of my mom and Laura, of course!–well, technically, they do most of the work. ). Just to let you know though, I have a view of the Space Needle from my bedroom, and at the other end of my apartment (when I say “other end”, I make it sound huge, don’t I?! It’s not that big though.), we can see the Hutch (where I’ll get my treatment). There is lots of construction going on around the building, so there’s lots of banging. For a girl used to birds and owls, it’s quite a change! I’m just waiting for my sound machine to arrive so I can drone it all out.

OK, I better get going, but I’ll write more later…maybe today, maybe tomorrow, but we’ll meet again soon! hahaha I’m so dramatic.

Love ya.

OK, well, there’s no sugarcoating anything. This sucks. I’ve had a pretty good day, other than my headache, but we’re 20 minutes away from Sunday, and that means I leave very soon. This time tomorrow I’ll be on a plane headed to Seattle, and I feel sorry for whoever has to sit next to me on the plane!

Yesterday was a wonderful day. My friend Rachel (also one of my excellent chauffeurs) took me to the doctor, then we got some Dairy Queen for lunch (mmmmm!!), and came home to play Scattegories. I quickly got addicted and kept having to play “one more game”.

Playing Scattegories with Rachel, Katie and Gobind

Gobind and I concentrate on the game. :)

Catherine and Lori join the party!!

Several other friends came to visit, and it was a great evening. Later in the evening, Lori came by, and she and Rachel packed for me!!

I think you ladies should start a business!!!

They are the two best organizers I know, and they did a wonderful job!!!!!! Thank you both for helping to make it more of a fun project, and for organizing my room for me.

The evening before, several other friends came by, and we enjoyed a great night out on the porch (sorry again that the owls didn’t show! Ronnie’s convinced we’re trying to call them too often now…oh well!). Theresa, a friend whom Laura has known since high school, brought by a really cool gift that I know will help motivate me out in Seattle: boxing gloves!! They are green and have the Irish flag on them (as an excellent reminder of my next travel destination), and there are signatures of friends and family covering the gloves.

They fit perfectly, and I’m contemplating wearing them to my first doctor’s appointment on Tuesday. Thank you for such a thoughtful gift. Laura plans on getting some shoelaces and tying them together so I can hang them on my wall.

Theresa, your stance looks much better than mine! I'll practice out in Seattle...thanks for the quick lesson, Abe!

I’m doing well, other than having what I think is an anemia headache. My doctor today thought it might be something else because my hemoglobin and hematocrit weren’t too low. What was crazy was that my neutrophils and white counts were abnormally high! I got a shot of Neupogen for the road yesterday, but my neutrophils were .9 yesterday, and today they were 15!  They never jumped up that high! I had no signs of infection, so the doc told me to come in tomorrow if I feel worse. I felt like I was all but begging for blood because I felt like that was what was causing the headache. Anyway, it’s still pretty annoying, but I just have to push through everything and get out to Seattle. I’m thinking good thoughts, and I’ll keep you updated on my numbers.

My emotions still feel a bit dulled, but I know tomorrow everything will come out. For some reason, it’s very easy for me to cry when I look at the dogs, again because I can’t explain all of this to them. I went outside about an hour ago to let Jameson and Guinness in and I stood there looking at the stars, listening to the katydids, and contemplating the trip to Seattle. Jameson ran up with a frisbee in his mouth, and I started tearing up. It was too dark to play, and tomorrow I know I’ll be busy finishing getting ready, and then I won’t see him until January. I guess I feel guilty. Everyone else in the family is tired from preparing for the trip, tired and stressed from all the emotions and the logistics, just tired of leukemia in general, I guess.

But I’m still optimistic. Tomorrow will be an incredibly difficult day for me, but I don’t have any choice but to get through it, and to keep working toward my goal, getting rid of cancer once and for all. My aunt Barbie wrote something really pretty in a recent e-mail to me, a teaching she heard once, and it will be a great visualization in the upcoming months:

“A person can’t NOT think something. So when a thought comes to mind, you can’t help it. But you don’t have to “entertain” that thought. You should REPLACE that negative thought with a positive thought, every time that negative thought comes to mind. It is easiest to pick the same positive thought and get into the habit of bringing it to mind to replace each negative thought. For example, ‘I can do all things through Christ who strengthens me.’ Or pick another verse or thought that suits you.”

I think I'll also refer to this image when I need a laugh...they're a little big on you, Rachel, but I love the pic!!

So here’s what I decided. Each time a negative thought comes to mind, I will picture myself dancing at my friend, Kristi’s, wedding next summer. I will be healthy, and I will be out there celebrating with everyone.  I know I can’t stop the negative thoughts from coming, but I can control how I handle them. Thanks for the advice, Aunt Barbie!!

Well, another long post, but it’s a big day…it’s actually 12:08 AM now…I need to stop watching the clock, huh?! I better get some rest, but I’ll write as soon as I can from Seattle. Thank you for your support and your wishes. I feel like you can only be as strong as your support network, and I feel like I’m stronger than those creepy-looking weightlifters at the Olympics. I feel all your thoughts and prayers, and they are indeed making a difference.

Sending all my love to everyone.

Hey there everyone!

I’m getting ready for bed, but I’m feeling pretty down right now, so I needed to get it out somehow. I’ve had a great week so far visiting with friends and family, but I realize that the week is drawing to a close and Seattle is no longer some far off notion. It is reality. I leave my dad, my pups, Ronnie, Kathy, Katie, Tiso and all my friends on Sunday to head off to a place where I don’t know anyone to have a dangerous procedure which could or could not cure me of cancer. I’m so scared. I’m sad. I’m disappointed that I have to do this, especially at a time when it seems that my life should be falling into place.

I had a great time visiting with my friend Gershon tonight, but as it’s been with other friends I’ve said good-bye to recently, I felt really sad to see him go. My counselor asked me yesterday what my biggest worry was with the transplant, and I told her it was that I may not see everyone again. I honestly don’t believe that’s true because I have a feeling I will do very well, but I know it’s a possibility and it makes me so sad. It feels good and bad to get some tears out. I know this is just a taste of the emotions I will feel in the upcoming days. Every time I look at the dogs, I want to cry. They don’t understand this…they’ll find out Sunday that I’m leaving, but they don’t know why or when and if I’ll be back. I feel like I’m deserting them, even though I know in my heart it’s what I have to do.

I’m worried that my dad will be lonely, upset and overwhelmed, and he’ll hold it all in. I know the rest of the family will help, and I know he’ll be out to visit me, but I can’t help but worry. I think I need to go read my lighthearted book “Cocktails for Three” before bed. Reading always helps. I bought 10 new books yesterday, thinking of the week I’ll be in isolation, and knowing that books provide me with an escape from reality.

I’m still thinking positive, but I’m so sad and worried at the same time. I know these are normal feelings, and I was thinking…maybe instead of looking at this experience as a disappointment in my life because, as I said, it seems everything should be falling into place at age 30, I should look at it as an opportunity to learn what lots of people don’t learn until they’re much older: what I can do to have my experience positively impact the lives of others and also how important it is to “go with the flow”, and find out what life has waiting for me.

I’ve certainly learned that planning doesn’t always work. I found a quote by Robert Louis Stevenson that reads “Don’t judge each day by the harvest you reap, but by the seeds you plant.” That sounds like a good motto for life…now I’ll just focus on finding my dream job once I’m allowed to work that will allow me to do just that.

Thanks so much for being there for me! It means so much, especially as Sunday gets closer and closer. I rely on all of you to help me through this, and you never fail to bring me smiles, encouragement and love. Thank you.

Love ya.