August, 2008 browsing by month


Saturday, August 30th, 2008

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!

Love ya.

Ready for some pics?

Friday, August 29th, 2008

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!!!!

Thursday, August 28th, 2008

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!!

I’m here!!

Monday, August 25th, 2008

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.

Sunday, August 24th, 2008

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

Playing Scattegories with Rachel, Katie and Gobind

Gobind and I concentrate on the game.  :)

Gobind and I concentrate on the game. :)

Catherine and Lori join the party!!

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!!!

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!

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!!

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.

Thursday, August 21st, 2008

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.

Thought I should include a happy photo to balance out my feelings expressed in the blog...this is a frog I saw with my friend Kristi on our balcony in Cuba in 2004.  We named him "José Luis" and he never fails to make me smile.  I hope he does the same for you!!
Thought I should include a happy photo to balance out my feelings expressed in the blog…this is a frog I saw with my friend Kristi on our balcony in Cuba in 2004. We named him “José Luis” and he never fails to make me smile. I hope he does the same for you!!

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.

One Week to Go

Monday, August 18th, 2008

Happy Monday!

So we’re getting down to the wire here…one week from tomorrow is the first day of appointments for Laura and me. Corporate Angel Network will contact me tomorrow regarding a free flight out to Seattle, so I’m keeping my fingers crossed! It says that they only take one other passenger with the patient, but I’m hoping to convince them to take both Laura and my mom with me! I’ll let you know how it goes. If it doesn’t work out, my mom found a flight that leaves Sunday evening and arrives in Seattle around 11 PM their time. I just want to stay here in Virginia as long as possible to hang out with everyone.

And speaking (or technically, “writing”) of hanging out, my family surprised me this weekend with a party. Laura contacted a small group of my closest friends, and they came out Saturday night to visit and wish me well on my trip to Seattle. Ronnie did a good job of distracting me: he asked if I wanted to go on a walk with him, Jameson and Guinness. We went the long way, but I told him on the walk that I wouldn’t be able to make it to the entrance of the neighborhood because I wore my flip-flops, and they weren’t comfortable enough to do two miles. We walked to the bus stop of our neighborhood, and he prolonged the walk by saying he wanted to see what it looked like on the inside, so we walked in, looked around, he pointed out some graffiti, and we went on our way. When we got back to the house, it was transformed! There were streamers, signs, balloons, and my parents, Laura, Kathy and Katie were all standing in the kitchen sporting orange leis (orange is the color for leukemia awareness). They yelled “Surprise!” and at first, I thought we were celebrating Ronnie’s birthday early since I would be gone, but they all seemed to be looking at me. I asked “for what?!”, and then I figured it out. :) I’m a little slow. Friends started showing up about an hour later, and it was a really special night. I wanted to share with you a beautiful poem that Laura wrote and then read to me when everyone was there. I was very touched, and I know this poem will find its way into my books as a bookmark, and it will be quite worn by the time I get back here to Virginia in January.


We’ve gathered here tonight to wish you well as you leave for Seattle,

We know you will fight hard and we know you will win this battle!

As your prepare for your journey out west, we know you’ve got a lot on your mind,

We know that once you get there, good doctors, nurses and courage you will find.

We know you will welcome every rainbow that shines after the falling rain,

Strength, good health and triumph we’re certain you will gain.

We know you will fight through this with gumption, humor and smiles,

We’ll be right there beside you, or sending well wishes across the miles.

You are truly an inspiration, the way you always find the good even in the bad,

The way you’re able to remain sound when many others would be mad.

We know 5 months seems overwhelming, the road seems windy and long,

But you’ve gotta do what you gotta do in order to again be strong.

We love you, we’re in this with you, we know you will persevere,

Now hurry up and beat this so we can celebrate in Ireland with beer!”

I didn’t quite know what to say after listening to her wonderful poem. I think my emotions are kind of dulled right now, and I feel like all my feelings are waiting to come out when I leave for the airport. Sometimes the tears will come when I’m alone or after Aunt Bitsy leaves (she stayed through yesterday and we had a wonnnnderful time!!!–I credit her with bringing up my counts. :) )…they also sometimes come after Ronnie, Kathy, Katie, Laura and Tiso leave too. Even though I know I’ll see them again, and even though my parents are with me, the house gets too quiet after a weekend of laughter, teasing and general loudness (is that even a word?). The important thing is that eventually the tears stop, and I am able to focus on other things to distract me. I just keep looking at the next several months as something I have to plow through. I have no other choice, and I have no better option for a cure. There’s no point in feeling down the whole time because that would just be unpleasant for me and everyone around me. Again, I really feel like the Lexapro is helping me in this area because my anxiety level went down a lot in the past few weeks. I feel pretty proud of myself for trying to find all possible ways to help me get through this…the relaxation CDs (thanks, Margaret, for bringing me your favorite the other day!! I know it will be a great help out in Seattle), a new yoga DVD, a counselor and Lexapro (aside from my friends and family—but that’s not something I had to find…all of you have always been there). I didn’t think I needed an anti-depressant because I wasn’t feeling like I couldn’t get by without it (that’s a lot of double negatives!–my English and Creative Writing teachers would not be proud!!). I figured the situation was difficult and I responded as anyone in my shoes would. Then I discussed it with my family and my counselor, and it seemed like Lexapro would be sort of like a crutch to help me through this time in my life, and I’m glad I have it in my arsenal of items to help me be strong enough to beat the leukemia again.

Well, this is pretty long (as always!), but as always, I have lots to get off my chest. Lori and I started packing yesterday…well, technically, Lori did most of the work. I was overwhelmed by the whole process and was easily distracted by little jobs like picking out the books I wanted to take. I also found several recipes my mom has been looking for the past year or so…oops! I put them away with other recipes I wanted to copy, and then I forgot about them…good thing I’m sick so my mom can’t get too upset with me! hahaha just kidding, she would never get too upset with me, but I think the fact that I’m sick makes her less likely to yell. :)

My numbers today went down a little bit, I think because Aunt Bitsy left…she is my good luck charm for blood numbers! Actually, the white count and neutrophils probably went down a little because they stopped the Neupogen shots Friday. Those are meant to give me a white cell boost, so once they stop giving me that, I think my own marrow has to work a little bit more to get the cells churning out. My hemoglobin and hematocrit went down a little too, so I’ll probably find out tomorrow whether or not I need blood. I do have a headache right now that feels like it might be an anemia-related headache, so I’m hoping if I need blood they can fit me in to the infusion clinic this week. My platelets are holding pretty steady around 33,000, so that’s a good sign. Hopefully they (along with my other counts) will start going up soon!!! I keep telling my bone marrow that it doesn’t have to work too much longer, so it should try and get its act together and give me some freakin’ cells!

OK, I’m getting a little tired, so I’m going to sign off! I think I might have a delicious bowl of Frosted Flakes before heading to bed…don’t be jealous!!!!! By the way, some people have asked for my address in Seattle, so here it is: Pete Gross House, 525 Minor Avenue North, Apartment 606, Seattle, WA 98109.

Think good thoughts for my numbers tomorrow! Good night!!! Below are some pics from this weekend…enjoy!

Love ya.

Hello from Oakshire!

Saturday, August 16th, 2008

Happy Saturday, everyone! All is going well here on Oakshire Lane. The weather is beautiful, although a little hotter than earlier in the week, and I have lots of company this weekend! Ronnie, Kathy, Katie, Laura, Tiso, Aunt Bitsy, my padres and the dogs, of course! Also, my cousin Mike came down with Karen and their sons, Jake and Ben. We had a wonderful afternoon, as you can tell from the photos. It was so good to see you guys!!!

So, I don’t get Sunday off from visiting the doctor’s office because they want to monitor my platelets (today, they are 30.4,000), but my other numbers are looking great! Here’s the breakdown: white count 5.27, neutrophils 3.86!, hemoglobin 10.5 and hematocrit 29.1). Not bad, huh? Kathy joined Aunt Bitsy and I at….guess where?!!!! Yup, IHOP for another delicious breakfast (we went yesterday too!). This morning it was chocolate chip pancakes for me and pancakes with a brown sugar sauce, bananas and ice cream for Aunt Bitsy…mmmm…sounds good, right?

In addition to these wonderful (for me) numbers, I don’t have to take my prophylactic anti-fungal, anti-viral or antibiotic meds. I don’t want to get too cocky yet, but I feel good, so I’m hoping any infections just stay away!! I’m still taking my Lexapro and Xyzal (for allergies) every morning and then my Ativan every night to help me sleep, so I’m not completely free of pills, but that’s OK.  They’re helping me and that’s all that matters!

I was quite happy to be given the go-ahead to go out in public (and to hang out with Jake and Ben too!). Aunt Bitsy and I went to several stores yesterday to celebrate my freedom. It may just have been Petsmart, Safeway, Ulta and the hair salon, but I had a wonderful time! I think Aunt Bitsy is a good luck charm for my counts. :) She also helped bring the owls out!! We were pretty hard-core last night…we stayed out a bit even though it was thundering and it started to rain. Although we didn’t see any owls, we heard them, but now I’m wondering if my mom’s right…perhaps a neighbor across the creek put the same owl sound on his cd player and plays it in response to ours. I don’t think so though—I know they’re out there!! I fully expect them to come out and give me a good send-off before leaving next week.

Laura is making dinner tonight, which I’m sure will be delicious. Tomorrow Lori will help me start packing, and I’m nervous, but I know she will help get me organized and keep it lighthearted. Thanks again, Lori!!

Hope you all enjoy your weekend!
Love ya.

Time to celebrate!!

Friday, August 15th, 2008

Hi there, everyone!

Today was a great day for so many reasons, but let’s just start with my counts. My white count is 2.1, and my neutrophils are 1.2! Tomorrow I probably won’t be neutropenic so I can actually go out!!! :) WOOHOO!! Once my neutrophils reach 1.5, I am no longer considered neutropenic which is a wonderful thing! By the way, under “pages”, on the right side of the blogsite, you’ll find a key for blood numbers so you can easily refer to it when I talk about my counts. Ronnie also included the speech I gave last year to Inova blood donors (don’t worry–I don’t go on forever! I think it’s 15 minutes long or maybe 10). Hope you enjoy it! I do get a little sappy at the end…I figured that way everyone would donate more. hahahaha just kidding…it was an emotional speech to give, so I was pretty proud I didn’t tear up until the end! Hope you can still understand me. :)

Getting on with my day, I enjoyed visiting with Arjun and Brenda, AND Aunt Bitsy!! Yup, she surprised me yesterday when I was in short stay at the hospital. She’s staying through the weekend, and I’m glad my numbers are up so we can head out to our restaurant of choice, IHOP, and I can put all the weight on that I lost while being neutropenic (it’s not much, just five pounds)! Then, this evening, my mom, dad, Aunt Bitsy and I headed over to have dinner with our friends, Norma and Steve (I can write your first names in the blog, but it’s too hard to break away from calling you Mr. and Mrs. Tuminaro since I grew up doing that!). We enjoyed some delicious homemade lasagna, as well as salad, garlic bread, chocolate cake and…………………… wine!!! I asked the nurse practitioner if it was OK if I had a little wine, and she looked for any reactions with my Lexapro (that’s the one that says “no alcohol” on it), and she said she thought a little bit should be fine. She did say I shouldn’t “get stoned”, so that was quite a disappointment, but I’ll adjust. hahahaha Thank you for the wonderful dinner and the company, Mr. and Mrs. Tuminaro (there I go again…it’s habit, I can’t help it!)!! It was a very special night.

Tuesday night, my mom, the dogs and I went to Laura and Tiso’s house, and we stayed out on their beautiful porch all night long!! It was such a gorgeous night, they had the fire going in their cool chimenea, and Laura made chicken cacciatore, which she didn’t like, but the rest of us did. That too was a special night, and I took some pics to share with you…actually, I have lotsa pics, so I’ll go ahead and put them in a gallery right now before I forget. By the way, if you want to enlarge the picture, click on the photo, then click again on the next photo that comes up.

Short stay went really well yesterday. I had wonderful nurses, and despite the fact that I was there from 11:15 AM until 10 PM, it was very pleasant. I took a couple naps, watched the Olympics, visited with my mom, Aunt Bitsy and Lori, solved one and a half Sudoku puzzles (it only took me almost two hours to do it–those are freakin’ challenging–and I was doing the so-called “easy” ones), caught up on some e-mailing, and refueled with platelets and blood. While I was there, I got a call from the Pete Gross House (check it out here:, where I’ve been on the wait list for an apartment in Seattle, and they have an apartment that will be ready for me when we get there! It’s apartment 606, which I think sound like lucky numbers to me…now, if it had been 666, that would be a different story!!!! Anyway, it’s a big relief to know we don’t have to find a hotel while we’re waiting for an apartment to open up.

Anyway, this week has been a great one, and I’m looking forward to a wonderful weekend. I might get a break from the doctor’s office this weekend too! I love talking to everyone there, but it does get tiring going back and forth, and it’s always a a good sign if I don’t need to go.

I was cracking up today because Aunt Bitsy said that the big patechia by my collarbone looks like a hickey (or “sucker bite”, as she calls it)….I never even thought about it, but it does! You can see it very easily, but I figured…hey, just let people wonder! It sounds like a lot more fun than just plain old patechia!

OK, I’m gettin’ sleepy, and I’m sure you’re getting tired of reading, so I’ll sign off. Hope everyone is doing well!! I’ll write again soon.

Welcome to my new blog!

Tuesday, August 12th, 2008

Here I am—new blog, but same wonderful posts. :) Ronnie set this up for me because I kept complaining about the asethetics of the other one. Apparently it’s for “advanced bloggers”…that’s me, all right, advanced!!! hahahaha I defer to Ronnie and Katie whenever I have any computer problems, but I’m learning…slowly but surely, right? I was playing around with the different features on the blog, and I decided to dedicate this first post to “a day in the life of Jameson and Guinness”. I hope you enjoy the photos!

They have a pretty good life, don’t you think? I’m really going to miss them and I know they’ll miss me, but I’m sure everyone will spoil them.

I’ve started taking videos with my digital camera, so when I start missing home while I’m out in Seattle, I can just flip open the laptop and see the sights and sounds from home. I got some good ones of the the pups playing yesterday, and I took one at night just to hear all the bugs (not that you can see anything!). I took one of the backyard, but unfortunately there weren’t any owls or deer or anything at the time. I’ll have to catch them in action before I leave.

Speaking of videos, I also ordered a yoga DVD to help keep in shape out in Seattle since I won’t be allowed to go to any classes! I hope it’s good…I was looking through the options and I thought, “well, I definitely won’t be up to doing power yoga, and I don’t need ‘yoga to lose weight’”, so I found a nice normal one, “yoga for every body”…I’ll let you know if it’s any good! I also ordered one of my very favorite movies, “Saving Grace”. If you haven’t seen it, you should definitely check it out! It’s hilarious and also heartwarming. :) Just make sure it’s this movie and not the tv series or anything.

Anyhoo, in health news, I’m doing well. I feel good, and my white count is .8!!! Neutrophils are .2, so they’re on the rise. Unfortunately, my red blood cells and platelets aren’t on their way up yet. I’m visualizing lots of cute little red circles with top hats and canes jumping into my bloodstream so I don’t have to get blood tomorrow. If my red cell count doesn’t go up, I will unfortunately have to go to short stay at the hospital (which, as I’ve written before, means long stay and is not fun at all) because the infusion clinic is booked up all week!! So think some good thoughts for those cells and you never know what will happen!!

Tonight my mom and I are going to Laura and Tiso’s house for chicken cacciatore…yuuuummy! I think the dogs will come along as well, and they love going over there, so it will be a nice treat for them.

Two weeks from today will be my first appointment for the pre-transplant workup out in Seattle, and as it draws closer, reality is setting in. I keep reminding myself that I will be back here in four and a half months, but of course I’m still nervous. Part of me worries about the possibility of not returning home, and I try to not dwell on worrying about dying, but this whole process is dangerous and there are no guarantees. I think the Lexapro has helped calm me down, but I still think about it. I’m not afraid to die, but I’m definitely not ready. I hope this isn’t upsetting anyone, but when you’re facing a disease like cancer, death certainly crosses your mind, and honestly it makes me feel better to talk about it and share my concerns. After I was first diagnosed, I thought more about what should happen if I die, and I wrote down my wishes for what I would want at my funeral (music, flowers, photos, etc.). I have a really good feeling about the transplant, but I can’t help but worry every so often. I have so much to accomplish and experience, and I plan on doing so with Laura’s marrow!! My ipod was on shuffle when I was getting ready this morning and my favorite hymn came on: “Precious Lord, Take My Hand”…not very danceable, but it did prompt a little discussion with God. I told him, no offense, but he better not be trying to take my hand any time soon. I think he heard me.

Also, since I’m listing my worries, I’ll add a few more. I sound vain writing this, but I’m worried about how my appearance will change if I have to take steroids following the transplant: will I get the “steroid round face”? Will I gain additional weight? It’s not a big deal in the scheme of things, but adding body image worries just doesn’t seem fair when I’m dealing with other more important things. Maybe someone out there is working to fix those side effects as I type! Anyway, it’s not a big deal, but I just wanted to pile all my worries into this first new post. Don’t be discouraged…I’m still positive, but I’m trying to make this experience as real to you as it is to me…no censoring! :)

Let’s end on an up note…a year from now, I’ll be healthy and getting ready for my favorite season of the year, I’ll be looking for a job so I can plan my Ireland trip, my hair will be growing back (everyone tells me the Fludarabine will definitely cause me to lose it), I’ll be with family and friends, and most importantly I can start dating! hahahaha OK, it’s not the most important thing, but it’s up there!!!

Hope you like the new site!

Love ya.