Julie’s Blog

Well, that kind of makes it sound like I had some sort of adventure today, but I didn’t.  I did, however, have my 18th bone marrow aspirate which came up clean!!  Laura’s cells are doing their job, and I can go to bed and have sweet, sweet dreams.

Actually, these last two days are days to remember.  No more cyclo, I’m 6 months out from the transplant, and things are lookin’ good!  I am extremely grateful, I’m relieved, and I’m tired.  :)  So that’s all you get from me tonight!  I’m off to bed.  I think this must be the shortest post ever.  Night!

Love,

Julie

That’s right!  I took my last cyclosporin (or “cyclo” to those who know it well) this morning, and I just realized now that I didn’t properly celebrate.  I guess I forgot it was my last one!  I’ll celebrate by having some hot cocoa with Reddi Whip for my dessert!  :)  OK, that’s not really a celebration ’cause I have it almost every night, but it’s still something to look forward to!  I will also take my last Dapsone tonight (an antibiotic).  The only Rx’s I will continue are the Acyclovir, Fosamax, Xyzal, Nasonex and Yaz…hmmm, actually, that’s a lot, and I think I’m even forgetting one!…plus several supplements.  It feels like less because the Cyclo is such a big deal; no more big fat grey, skunky smelling “tick” pills for me!

Tomorrow’s a big day!  I go in and have the first bone marrow aspirate/biopsy since before I left Seattle.  I’m looking forward to good results, so I can attribute these aches and tiredness to transplant effects.  I should have some idea of the results tomorrow night when Dr. Kales calls me after looking at the cells, and I will certainly let you know ASAP!

I have a couple mouth sores right now, so I started doing salt rinses to prevent GVHD of the mouth.  They’re not painful, but they sure are ugly–just reddish-purple marks on the inside of my cheek.  I’ll mention those tomorrow.  I’m also taking along my handy little notebook so I can ask all my questions.  I don’t think there have been many visits when I didn’t go in with comments and/or questions.  They loved it in Seattle, and I’m pretty sure Dr. Kales does too. 

OK, enough medical stuff…on to my exciting weekend.  My dad’s friend, Charlie, came out Saturday to do some metal detecting.  I guess I should explain a little more so you know why he would want to come out to our house to do it!  We have a mill site on our property down near the creek, somewhere I would go when I was little to eat lunch and explore the woods with friends.  It’s from the 1800’s, and if you didn’t know what it was, you might just pass by, thinking it was an interesting pile of circular rocks.  :)  I just tried looking up specific info about it through google, but I couldn’t find anything.  I’m not sure if it’s because it’s privately owned or what, but I do know that many years ago, a museum wanted to take the stones to display them, but my mom said “no!” because she figured they are more appreciated in their natural setting, which is definitely the truth!  If I walked by some mill stones in a museum, I’d probably say “Oh look, mill stones” and move right along.  If I’m walking in the woods behind my house and come upon them, well, then it’s part of history!  Anyhoo, this is a long story, isn’t it?  I just wanted to give you some background on the site and our neighborhood so you could understand why metal detecting could yield such wonderful results!  And just to add to your knowledge just a bit more, the neighborhood was once owned by the Simpson family.  There is an original house (the farmhouse), a barn (which was turned into a very cool house many, many years ago), and a cemetery.  I always thought the cemetery only had graves for three or four people because there are not many headstones, but I discovered this tidbit of information: http://www.fairfaxcounty.gov/library/branches/vr/cem/cem273.htm which taught me otherwise.  In my younger days, we would walk up to the cemetery at night with a baseball bat, Agatha and Sherlock (our Border Collies), a patrol belt (OK, I only wore that once, just so people would know I was in charge!), and try and scare ourselves.  The bat and the dogs were for protection, in case we came upon any crazies while out walking.

Moving ahead with my story though, our adventures in metal detecting taught me a new appreciation for history and our own property.  It’s pretty cool to think of soldiers camping in our woods during the Civil War.  The mill site and and the creek would have been very important to them when picking a place to camp or rest.  Luckily, it’s not a well-traveled woods, so running into a lot of modern-day trash like bottle caps and today’s modern bullets would not pose much of a problem.  I included pictures below of what we (well, technically, they, ’cause I’m not allowed to go digging around in the dirt–I was just there to photograph the events) found. :)  We only worked on a small section of the woods for a couple hours, and they found all those relics.  I was (and still am) quite excited about it, and I’m looking forward to having Charlie come out and do it again someday.  Something he mentioned that I found quite interesting:  I asked him if he was allowed to hunt at battlefields, and he said no, and that actually some battlefields have had planes fly over to drop lots of nuts and bolts and metal that’s worth nothing.  This way, a relic hunter would be discouraged early on, and wouldn’t disturb the battlefield.

When we came back home, we were all hot, hungry and tired (even though I didn’t do the physical labor involved…digging, filling dirt back up, holding the metal detector for extended periods of time).  I also came back with ticks…three of them!!!  Now why hasn’t anyone invented the “tick detector”, a device that acts as a scanner and you aim it from your head down to your toes so you know whether there’s a tick on you!  They’re so gross!  I had two on my left leg and one on my left shoulder.  Needless to say, I treated myself to a nice, long shower.

Saturday night, I made a picadillo (see http://en.wikipedia.org/wiki/Picadillo) and we stuffed it into tortillas…it was delicious, if I do say so myself!!  It had ground beef, raisins, olives, black beans, red peppers, onions and lots of delicious spices.  My dad already requested that I make it again this week.  I think it would taste great in an empanada, so I’ll have to try that someday.

Sunday, my mom and I ran some errands and enjoyed the beautiful day.  In the evening I drove downtown and ate a superyummy Italian dinner with Kristi and Dave.  Thank you again for having me—it was a wonderful meal, and I enjoyed the company too, of course.  :)  I forgot to take a picture of you two for the blog though!!  Next time.  It was a beautiful drive down and back, and it was wonderful to spend time with them and catch up.

Well, it’s gettin’ late…it’s 12:48 AM, so I officially wish myself a Happy Six-Month Julaura birthday!!  I have a big day tomorrow, so I better hit the hay.  Oh, and more importantly, I’d like to wish Tiso a HAAAAAAPPY BIRTHDAY!!!!!!!!!!  I hope you have a great day, Tiso.  I know I will!  No cyclo, no dapsone, 6 months out from the transplant, and getting ready for my 18th bone marrow.  Yes, I’m even excited about that last part because it will give me peace of mind.  In six more months, I’ll be back in Seattle for my check-up, and I’ll be ready to paint the town!!

Lots of love to everyone, and remember:  “Never look down to test the ground before taking your next step; only he who keeps his eye fixed on the far horizon will find the right road.” - Dag Hammarskjöld …..Deep thoughts by Dag…I’m lookin’ at the horizon!  I’ll be really pissed if I trip on something while I’m trying to find the right road…I’ve had enough hiccups in life, and it’s time to plow ahead.  —-I mixed so many metaphors there, and it was great fun, but I hope it makes sense.

Julie

I hope you enjoy the photos from today!  I decided to roam the yard in search of beautiful flowers, and as you can see, I found many!  Guinny was not in a photo shoot mood today, so that’s why he’s not featured.  ;)  I painted some more today with Dorothy (I’m trying to transition from saying “Mrs. Dowdy”).   It was quite relaxing, and I’m pleased with how my flower is coming along.  It’s just so peaceful sitting there chatting, painting and listening to beautiful music.

Since our last painting session, I realized that I notice more color in everything I look at.  Guinness is just full of all different mixes of browns, greys and whites.  In the evening when the sun is setting, it doesn’t simply paint the trees in yellow; I see greys, blues, greens, whites…learning new ways to experience my surroundings makes me appreciate nature all the more.  It also gives me a newfound respect for artists who can capture each detail of the various colors.

I hope you enjoy the pics!  I’m pretty happy with how my flower-picture-taking skills are developing. 

Have a wonnnnnderful weekend!

Lots of love,

Julie

PS My friend Elvira just sent me this link and I knew I had to share it with you…can you believe it?!!  Creeeeeeepy!!!!!!!!!  http://www.momlogic.com/2009/03/the_baby_snuggie.php

Well, hullo there!  How are ya?

Not too much has changed since I last wrote, although I did rescue another mouse.  I had another talking-to with Bella, but she just turns around so her butt is facing me.  Cats…they just don’t have the same respect for humans that dogs do!  I still love ‘em though.

Instead of writing another of my amazing, one-of-a-kind posts tonight, I’m just going to copy what I wrote on the questionnaire I received from Seattle today.  Every year, Long-Term Follow-Up sends out questionnaires to find out how patients are feeling physically and emotionally.  There are lots of “yes or no” questions regarding physical/emotional symptoms, requests for prescription updates and consulting doctors’ information, as well as a place for comments.  The “comments” section is what I’m copying and pasting for you tonight:

“Although I feel any worries I had before doing the questionnaire are diminished a bit (considering the types of question asked and the other possible problems I could have), I still feel anxious.  I am having a bone marrow biopsy next week at my request.  I don’t necessarily feel my leukemia’s back, but I worry when I feel more tired, and when I can sense a pulse in my head.  I have uncomfortable head/neck aches (for the last 2or 3 weeks), and being relatively isolated leaves me feeling antsy.  Because I’m not working, I have a lot of time to think and worry.  I’m able to distract myself, but to be honest, I feel fairly discouraged right now.

After re-reading what I wrote above, I realized it made me sound as if I were sitting in a chair, doing nothing and feeling sad.  That is far from the truth.  I spend a lot of time outside, playing with my dogs and helping my neighbors with theirs.  I walk, I recently started cycling, I work on projects around the house.  I read, spend time with friends and family, and I dance (not formally, just around the house! ).  I keep a blog about my cancer experience, and I’m working on an article to submit to a local magazine.

I try and push through pain from the head/neck aches, and I’m always thinking of ways to keep up a positive attitude.  All in all, I’m doing very well, but I also wanted to express my worries.  They come and go, and I guess lately they seem more nagging, which is why I wrote about feeling discouraged.  I keep repeating this affirmation:  ‘I will recover fully, I will stay in remission, and I will live a normal life.’  With the help of the SCCA, my local MD team, friends and family, I do believe that is true.”

Included with the questionnaire was a collection of comments from patients last year.  Some were positive, some quite negative.  I read a lot of them (but not all–there were a lot!!!).  Several comments centered around feeling tired and achey, apparently a common bond between both new transplant patients and those many years out.  That made me feel more normal, but I don’t want to feel this way years from now!  Still, I felt relieved to read this comment:  “It takes time, a lot of time, before you get past the fatigue and other symptoms and feel somewhat normal.”

Not surprisingly, I concentrated on the positive remarks.  There were many notes from patients 20+ years out!  That in and of itself is encouraging!  There was someone who’s run six marathons since the transplant, someone else who cycles 110 miles, runs 8 miles, rows 18 kilometers, and does yoga 2-3 hours A WEEK!!!  There were funny comments, like the patient who tells friends it’s good he/she was “highly intelligent before all that chemo, because now [he/she] is just a little below average”.

The negative ones seemed to focus on the quality of life post-transplant.  One person termed it being an “existor” rather than a “survivor”.  Another patient wrote that “the cure is worse than the disease…if [his/her] AML were to return, [he/she] would be at peace with death and a quick one at that.”  This was written five years after his/her transplant.

Many patients struggled with the question of whether any aches/pains were caused by aging or residual effects of the transplant.  That makes sense…I guess from now on, I’ll always wonder what causes changes in my body.  There were eleven pages of comments, and I plan on saving them for when I need a pick-me-up (you can bet I’ll be staying away from “The Worst of Times…” section)!! 

Filling out the questionnaire made it clear to me that I’m doing spectacularly well because I could answer “no” to questions like, “Have you had a lung biopsy?”, “Have you been diagnosed with a skin cancer or any other type of malignancy?”, “Have you had an organ transplant (kidney, lung, liver, heart, others)?”, “Have you had surgery to replace a joint?”, “Have you been diagnosed with a cataract?”, “Have you had any seizures, fits or convulsions?”.  Do I feel like myself?  No.  But judging by the questions in the form, I think I’m doing quite well considering.

Also, they sent some long-term follow-up recommendations, and the first one talks about how transplant patients are at an increased risk of cancer, specifically cancer of the skin, mouth, breast, thyroid gland and brain.  My nurse practitioner didn’t mention those when I asked her the other week…I knew there were other specific cancers I would be at risk for other than blood cancers.  Not that I’m happy about that, but I am happy that I was right!

Even though I probably shouldn’t be copying all these quotes into my blog, I found them helpful so I wanted to share them with you…don’t tell the SCCA I did this!  :)  I’ll end with their “final thought” because it is beautifully written and nineteen and a half years from now, I hope to reflect on my life the way this patient did:

“Twenty years ago I was in my twenties, scared and uncertain about the future, not knowing if I was going to live or die.  The transplant was my last ray of hope and it saved my life…What I would have missed:  finding the love of my life and celebrating our 15th anniversary (he fell in love with me when I was still hairless).  I would have missed hiking in the Sierras and Idaho wilderness, skiing at Squaw, Alta and Alpine, sharing companionship with 3 great canines, canoeing in the Oregon lakes, and a road trip from California to Canada.  I would have missed becoming an Aunt, now a great Aunt.  I would have missed attending nursing school shortly after my transplant, becoming a nurse to work with AIDS patients, cancer patients and the elderly.  I would have missed chocolate, the song of the sparrow in the spring, the rainbow at the end of the rainstorm.  I would have missed my mother and father growing older, the wisdom of great Aunts, and hugs from old friends.  I would have missed my sisters all becoming mothers.  I would have missed the sweetness of my friend’s viola in Mozart.  I would have missed being part of others’ lives, however small.  Thank you for giving me back a wonderful life.  I would not have changed anything.”

When I write mine in nineteen and a half years :), I hope to include how I traveled the globe, fell in love, started a family, participated in multiple Team in Training events, learned another language and some new songs for the piano, filled up my recipe box, and contributed to society with a wonderful career (hmmm…I wonder what that will be?!!!).  I would like to write about how I planted a garden, landscaped my home, cooked like a pro, and went to at least one Yankees game a year (in New York, that is).  I will write about all the celebrations I enjoyed with family and friends, and all the hours I spent playing with my dogs.  Finally, I will write about how I thank Laura every day (mentally, that is…you don’t need me to call you and say “thank you” every single day!). 

Oh, and one more thing!  Now that I’ve tried those delicious cupcakes the cupcakeries (is that a word?) sell for $2.75 each, I would like to write about how I savored at least two of them a year.  And rhubarb pie!  And spinach and artichoke dip!  And the occasional blizzard from Dairy Queen!  OK, I better stop…I could go on and on.  ;)  You get the idea.

I hope you’re all doing well…just a couple photos for you tonight.

Love ya,
Julie

Hi there!!  How are ya?  I’m well, except for a head/neck ache and a bit of a sensitive tummy.  I will mention these to the doc next week, and I’m hoping the tummy issues are not at all related to GVH of the gut.  I’m almost done with the Cyclosporin–down to 25 mg a day, isn’t that amazing?!!  Just think, I started out at over 300 mg (twice a day!) and now it’s 25 once a day.  Very, very exciting, but at the same time, I have to be even more watchful of possible GVH outbreaks.

I’m enjoying all of the beautiful weather, but I haven’t yet established a fixed schedule for riding my bike, walking, doing some of my DVDs.  In fact, I’ve been relatively lazy this last week.  I was able to catch up on some facebook stuff today though, so that made me feel good!  Plus, I finished my project of putting my CDs into those big books with sleeves.  My CD holders were getting rickety and so many of the cases were broken.  I think I’ll listen to a greater variety of CDs now that they’re easier to find.  In fact, I’m listening to one right now that I haven’t heard in years….good stuff!

Going back to enjoying the weather, there’s a little red fox I keep seeing in the neighborhood.  The first time, he was in a big field up near the front entrance, the second time (last night), he was watching me play with the dogs from the safety of my neighbors’ yard (maybe he knows the dogs have an electric fence!)…it kind of seemed like he wanted to play some ball too.  I saw him again this afternoon walking into my neighbors’ yard.  When he was in the front yard, the deer were roaming the backyard.  I find such peace in nature, and I feel very lucky to have so many chances to observe all these beautiful animals.  I found another little animal today in quite different circumstances.  (Aunt Bitsy, you might want to skip this part!!) :)  I went outside this morning to find Bella and Guinness batting around a little baby mouse.  I know catching mice is part of Bella’s natural makeup, but I had no idea that they played so long with their prey!  I couldn’t watch it, so I went inside, put on some latex gloves and grabbed a paper cup.  I went back onto the porch and set the cup on the ground.  The poor mouse climbed right into it.  His heart was beating so fast, I thought it might just pop out of his little chest.  I carried the cup to the backyard and let him loose.  I’m sure Bella was pissed, but I felt better.  :)  Ronnie thinks I disturbed the natural pattern of life, but I bet if he saw what I saw, he would have saved the little guy too!  I mean, if you’ve ever read “Stuart Little” or watched “Cinderella”, how could you let it die? 

And adventures with nature continue…Guinness ate a bird egg yesterday.  I’m telling you, it’s pretty exciting out here!  Even if I’m not allowed out and about too much, I feel quite involved with all the creatures in my ‘hood.  That being said, I am still craving a night out at “Murphy’s”.  I am so ready to be part of society again, to hang out with my friends and to meet new people.  Yup, I’m experiencing some cabin fever, even though I go out to the doctor’s office, the Safeway occasionally, Laura and Tiso’s house, Petsmart, and to friends’ homes.  I love hanging out with my family, but I’ve already lost several years of unlimited socializing, and I’m really craving it.  A couple more months, I know, but that might as well be years for as antsy as I feel right now.

I want to meet people, I want to date, and I want to forget about the last guy I hung out with over a year ago.  It’s not easy to forget when I have lots of time to think and there’s no one to take his place right now, even when I know that we weren’t a good match!  It’s just crazy how the mind works, and I keep pleading with it to move on to a healthier place.  I only mention this because I ran across a picture of him today, and it made me feel pretty sorry for myself…”poor me!  I’m single, I’m recovering from cancer for the second time, and I have no prospects at the moment.”  I drove out to pick up some skin care products from Clinique with a gift card Katie gave me last year, and on the way back I cried a little (with a little help from some sad songs by Joshua Radin ).  When I was feeling the lowest, my phone rang and I saw it was my cousin!  Perfect timing, I thought…it proves someone’s looking out for me to send me a call right at that very moment (good thing my dad had you call me, Trace!).  :)  I talked with her and listened as my goddaughter babbled and laughed in the background.  My tears dried up, and I smiled.  I drove to “Dairy Queen” to treat myself to a Reese’s Pieces blizzard, content that my evening had turned around.

Jennifer, I keep thinking about the comment you made in group last week, about how you wished you were dating someone when you were sick, but how you realized that as a single woman, you could make all decisions purely for yourself, without worrying about the feelings of another person.  You are quite right about that.  Many times, I wondered if having someone to hold me at night would make the experience easier, but being single allows me to focus completely on myself and my healing.

Driving home from Dairy Queen, I reminded myself that I alone am responsible for choosing things to look forward to.  I am the only one who can reel me back when I go to the darkest places in my mind, and I have to constantly discover different ways to bring back the positive thinking.  As I realized that (for the millionth time since first being diagnosed), I thought of a new goal, something to work toward in the coming months.  Anyone up for a hike up Old Rag in June?  I am the only one in my family who hasn’t been, and I think the time is now (well, actually, June…I need to iron out that workout schedule so I can make it to the top!).  Thank goodness I’m allowed to be outside during all of this!  I may be limited in other ways, but the ability to spend time outside (all covered in sunblock and a hat, of course!) is a blessing.

Some good things about being single for so long:  I can choose what and when I want to do something (eg Old Rag), I am strong enough to go to weddings and parties alone, and I’ve had lots of time to get to know myself and what I want.  Of course, I have to remind myself of those things when all I want is to have someone around to comfort me when I don’t feel so strong.  I hate that cancer is so pervasive that it disturbs dating life, but I still have hope that somehow it will all work out OK in the end.

Wow, I’m getting too serious now!  Time to lighten things up.  I saw this first thing the other morning when I checked my e-mail, and I thought I’d pass it on to you…more hula hoop publicity!  Who knew I was so cool?!  hahahaha Check it out: http://www.dailycandy.com/washington_dc/article/42513/Hoops+That+Girl…pretty neat, huh?  Thanks for sending me the link, Katrina and Paloma!  Dailycandy.com is actually a really cool site that sends you info about whatever city you live in….night life, best restaurants, sales, classes, new bars in town, etc…it’s quite informative!

I hope you like the pictures below!  The ones of Bella and Guinness are probably the best ones I’ve ever gotten.

Lots of love,

Julie

That is the affirmation I keep repeating.  I always use visualization as part of my healing, but I constantly forget about the power of affirmations.  I know, it sounds creepy and new-agey, but it seems to be fairly common in the cancer community. So, when I’m taking a shower, laying in bed, playing with the dogs, driving around town (you get the idea!), I repeat these three phrases to myself.  It’s the answer I prefer when I ask myself what lies ahead…Like one of my favorite songs, I’m always wondering what will I be, who will I love, what awaits me in coming years?  The answer of course is “que será, será”! If you haven’t heard the song, you need to listen to it…it’s a classic!  http://www.youtube.com/watch?v=xZbKHDPPrrc.  “Whatever will be, will be”; this phrase couples perfectly with my basic motto of going with the flow.  However, I thought I better specify a little bit more clearly how I perceive the years ahead:  I will recover fully, I will stay in remission, and I will live a normal life.  There is absolutely something to be said about the power of positive thinking.  It’s certainly more fun than worrying all the time (but don’t think you’re getting off easy—I’m sure there will be future posts where the worrying comes back to pay me a visit, and I pass it right on to you to relieve myself of its burden)!

But no worrying on this post.  First, here’s a little youtube video to entertain you.  This is what Jameson is capable of…herding is in his blood.  Unfortunately for him, there are no sheep around these parts, so he settles for herding his humans which certainly proves difficult because they are so stubborn.  Although he has yet to have the chance to implement his skills, I have no doubt he would take to the fields as Guinness takes to water….guess that doesn’t make much sense if you don’t know that Guinness absolutely loves water!!  Anyway, check this out.  I think you’ll really enjoy it: http://www.youtube.com/watch?v=D2FX9rviEhw…amazing, isn’t it?  Now, with a little work, Jameson would be excellent at that!  We actually have a gift certificate to take him and Guinny out to a farm here in VA so they can practice herding.  We were going to redeem it last year, but then I went and ruined everything, so hopefully we can arrange it for this year instead!

OK, before I tell you more about my appointment with the nurse practitioner last week, you have to hear my new favorite song…I drove around all week last week putting it on repeat…I love the beat, and it’s lotsa fun to sing along to.  Let me know what you think:  TgeWbhttp://www.youtube.com/watch?v=5v7Z3w.  Catchy little tune, don’t you agree?  Thanks for making me a copy, Katie!  The whole CD is really good, but this one is by far my fave.  Now you can feel like you were practically in the car with me as I drove around this week, because I played it over and over and over.  :)  Needless to say, I’ve been humming it too–it was like my soundtrack for this week.  And now for things I found out at my appointment:  I can have a glass of sangría at your wedding, Paloma!!!!!  When she told me that, I pushed a little further and said, “So, I can have a glass of wine with dinner now?”  At least I tried.  The answer was no.  Well, poop on her for ruining my fun!  hahahaha  just teasin’…I know it’s for my own good.  I have to stay on Acyclovir (an anti-viral medication) until October, so maybe after i’m off of it, I will be more free to enjoy some wine and cider.  Not that I drank a lot of it before, but you know how it is when you’re not allowed to have something…you want it all the more!

OK, continuing with the appointment, she said my white count still seems “putzy” (her words, not mine), but she’s not worried about it.  It could be the Dapsone (an antibiotic) is suppressing them (and I will be off of the Dapsone on April 7th), it could be that I have a slower engraftment (here again I was confused because I thought I was already fully engrafted!)…I plan on asking my doc more about it in two weeks when I go back.  When I asked her about secondary cancers, she said they usually don’t happen until many years later, the result of high-dose chemo and radiation…I don’t think too much is known about the iodine 131 treatment I had.  In any case, it doesn’t happen until later and it typically happens in the form of a blood cancer.  I was under the impression it could be any type of cancer…skin, breast, etc…again, I will mention it to my doctor to get more details.  Hearing more about the possibility of a secondary cancer fifteen, twenty years down the road scared the crap out of me.  I know once you’re a transplant patient, you must always be hyperaware of your body and how you feel, and you must deal with this for the entirety of your life, but I guess I didn’t realize the severity of the possible problems.  When she told me that, I thought “Well, great!  Because if I get another blood disorder, that’s it…I’m a goner!  I already had a transplant…the only possible thing they could try on me is a research study, something about Laura’s T cells”…I don’t remember the details.  Thinking about it now though, research constantly leads to new discoveries and treatments, and who knows where we’ll be in fifteen to twenty years?

To be honest, I hope I never need to reap the benefits of future research, because I would like to be carrying on with my normal life, you know, the one I envision in my affirmation.  I forgot to add one phrase to the affirmation:  ….and I will live a normal, facial hair-free life.  :)  Guess what?  I shaved my eyebrows the other day with my nose-hair clipper.  I’d been thinking about it, but I thought, well, there will be some stubble and it won’t look good, but actually there’s a big difference!!  Ultimately, I will remove it with waxing/threading/sugaring, but that won’t be for a while.  The nose hair clipper doesn’t leave marks or irritate my skin, and I look much better, thank goodness!!

It was actually quite the week.  I shaved my giant eyebrow, went to see the nurse practitioner, picked up my bike, RODE my bike (I was breathing quite hard the whole way!), went to a movie (”I Love You Man”….hillllarrrious, by the way!), slept at Laura’s house, went to my young adult cancer group at Life with Cancer, worked on a photo album with Lori, and hung out with Ronnie, Kathy, Katie, Vlad and Klaus!!  It was wonderful!!  I hadn’t been to one of the young adult group meetings since last spring, and it was so nice to reconnect with everyone.  There were many new people there, in fact the meeting was probably the largest one I’ve ever been to.  I wish it weren’t so large only because I hate to learn about cancer striking more people.  Unfortunately, there is nothing I can change about that, but I know that we all learn from each other.  We learn how to cope, what questions to ask, how to move on with life following treatment.  I certainly didn’t want to be in this position, but I feel that because I’ve faced cancer twice, and I’ve lived beneath its shadow for just over four years now, I’m somewhat of an expert.  I think everyone in the room is or is learning to become an expert in their specific disease.  We all have valuable information/advice to share, and having an outlet where we can do so is quite reassuring.

In other news, did anyone notice how everything seemed to turn green overnight on Friday?  I woke up Saturday to a beautiful rainy day, one of very favorite things, and when I drove around, I noticed all lawns were bright green.  More flowers were blooming, especially the cherry trees, bugs were singing, the air smelled different….it appears as though spring has definitely sprung!!  Hallelujah for that!!  Don’t get me wrong, I love the winter (as you should know by now!), but I get so excited for each new season to start…a fresh start and new growth to attract our eyes, new aromas to fill our nose, the spring symphony of bugs and birds (very different from the summer and fall ones).  It’s especially delightful to play outside with the pups and breathe in the smoke from the fireplace carried by the soft breeze blowing leaves across the yard.  The two seasons seem to be mingling for a while, and the days they create together are the best days of the year.

I have my window open so I can enjoy the beautiful evening too.  I’m getting pretty tired now, so I will say goodbye for now.  I hope you all enjoyed your weekends as much as I did mine!  Happy almost April!!

Lots of love,

Julie

I’m feeling pretty itchy right now, and I’m pretty sure it has to do with the fact that I carried a big (about an inch or so) spider outside this morning….not in my bare hand, mind you, but in a paper cup with another paper cup on top so it didn’t try anything sneaky like jumping out.  Isn’t it funny how one interaction with a bug or a story about bugs can cause your ankles to start feeling a little tickle…then you feel the need to run your hand through your hair…and so on and so forth?  You may ask, “why didn’t you squash it?”.  Well, I just prefer not to, since they eat some of the bad bugs, and they aren’t out to get me (that I know of).  Who knows?  Maybe they have spider conventions and they refer to me as “the kidnapper”…I constantly separate them from their families when I gently dump them out of cups into various parts of the yard.  I assured the little guy today though that he should find lots of friends and food outside, and that I hoped I wouldn’t find him back on the kitchen floor.

In other news, I had more pleasant dreams last night!  Oh man, I hope I don’t dream about spiders tonight!  I remember hearing on Howard Stern once that you swallow 7 spiders in your sleep during your lifetime…is that true?  I am not looking up any spider stuff on the Internet tonight because I will most certainly dream about them!

I really enjoyed my day today.  As you can see below, I played with Husky and Max (and Jameson and Guinness, although I figured you were growing tired of all my photos of them ), and I spent several hours painting with Mrs. Dowdy.  I was nervous about painting, because I haven’t done it since middle school, but I told myself, “this is for fun!  No one is grading it!”.  So when I sat down at the table, I felt relaxed and ready to give it a try.  I worked in acrylics and began painting my favorite flower from Seattle (see photo below).  I didn’t feel self-conscious, and Mrs. Dowdy was a wonderful teacher, constantly encouraging me.  I look forward to doing it again!

I just checked http://newyork.yankees.mlb.com/index.jsp?c_id=nyy, and the opening day is 13 days, 18 hours and 40 minutes away!!  I’m looking forward to the comforting sights and sounds of baseball, and also to reacquainting myself with the team because I paid practically no attention to them last year.  I’m baaaack, and I vow to be a better fan this year…but hey, I had a pretty good excuse last year, don’t you agree?

Tomorrow I’ll see the transplant NP at my office, and I have a long list of questions to ask, from, “Can I drink sangría at Paloma’s wedding?” to “What should I expect when I finish my taper of Cyclosporine and stop the Dapsone?”.  I will pass on any information to you!

I have one more television commercial to comment on:  https://www.getloudandclear.com/ver4/index.asp?refcode=ldnclr4…it looks like a handy device, but again, the commercial just cracks me up, especially the one where the lady is listening in to what her neighbors say…well, that one and the cocktail party one where the women are talking about how handsome the new guy is, and he’s listening in from across the room.  I don’t know how you feel, but I think I would find it annoying to hear every conversation going on around me, especially if someone says something bad about me, like “I can’t believe she’s wearing that shirt!”.  That’s right, they don’t put any of the negative stuff on the commercial…come to think of it, wouldn’t it be funny if they did? 

OK, “Medium” will be on pretty soon, so I’m off, but I hope you all enjoyed your Monday!!  I’ll be picking up my bike tomorrow, so be prepared to hear about my cycling adventures!  Maybe “adventure” isn’t the right word…they’ll be more like “neighborhood jaunts”.

Love ya,

Julie

Hi there!  I was just looking through photos from last year, pre-Seattle through today.  The Seattle ones made me nostalgic, not to be there for any clinical purposes of course, but to be there for the enjoyment of the city itself.  Don’t you think I should write a travel guide for Seattle?  I feel like I’m its biggest fan…if you can say a city has fans.

I was looking through the photos to find some good flower ones because I’m going to Mrs. Dowdy’s house tomorrow to paint!  Now, I took art classes many, many years ago, so I’m not expecting a masterpiece, but it will be fun to learn how to work with the paints again.  And I know the company will be wonderful as well! 

So guess what?  I’m looking forward to sleeping tonight because the past two nights, I had good dreams.  I can’t remember much about them, but I woke up happy and ready to start my days.  What a difference!!!  I wonder if it has to do with the fact that I’m reading more and more each night of my Maeve BInchy book, and like all her books, it’s full of interesting characters and lots of detailed descriptions about the Irish towns where the stories take place.  I guess it doesn’t matter why I’m having good dreams as long as I’m having them, right?

It’s been a relaxing weekend…you know, the kind where you sit down for hours to savor your coffee and devour whatever reading is in front of you—magazines, the newspaper, a book.  It feels as though life is as it should be, dogs resting on your feet, Dad grinding up the coffee, good music on the stereo.   OK, that’s specifically my life, but you know what I mean!  We also enjoyed a deeelicious steak dinner with Rachel and Jason last night, then we played a little bit of “Bananagrams”…if you haven’t played that game, you need to!!  Tiso’s aunt sent it to me in Seattle, and we really enjoyed it.  Speaking of gifts I received while out there, the Thiels also sent me some delicious chocolates made by another neighbor’s son.  Look below for a picture of them!  My mom went out yesterday and surprised us with some…what a treat!  These (http://artisanconfections.com/) are the best chocolates I’ve ever eaten!  Gobind, you know what I’m talking about!!  You had the pleasure of enjoying some out in Seattle!  It’s a good thing I did some exercises for my knee today and spent lots of time playing with the dogs in the yard, because I certainly enjoyed my fair share!

I’m looking forward to the upcoming week:  I’ll get my bike back, I visit with the transplant nurse practitioner Tuesday, tomorrow I paint, I get to play in the yard with my neighbors’ dogs as well as my own, I may go out and see a movie…it’s a full week!  Also, I’ll probably finish one book and start another!  Don’t you love that?  I have many, many books I look forward to reading, and it feels good to have the energy and focus to read them (I took so many to Seattle and barely read anything!!).  I’m also looking forward to the coming months because I get to go to Cape Cod for a wedding in July, and then we head out to Seattle in October.  It’s fun to think about these travels, especially since I’m still relatively isolated here at home.  I don’t think I’ll ever take for granted the luxury of going out into public.

OK, let’s end this with some entertainment.  My mom forwarded this along to me…it’s hilarious; you have to check it out:  http://www.youtube.com/watch?v=bJm4MqhWLcA.  Also, my dad and I are currently watching a show about the world’s deserts, and I wanted to share this clip with you:  http://www.youtube.com/watch?v=e0qDq6DqgoA…It’s very educational, but most importantly, it’s entertaining.  Doesn’t it look like they choreographed a dance?  Note:  you must watch it all the way through in order to see the best part.  Another question:  why is the male always prettier than the female?  Aren’t those colors beautiful?

Hope you all had a wonderful weekend, just as I did!

Lots of love,

Julie

Thought you might appreciate an alternate ending to my previous post today…the nightmare cloud no longer looms quite as dark over my head.  I went out on a wonderful walk with Mrs. Dowdy, we ran into another neighbor, Jason, and we visited with Mr. Dunetz and his beautiful horse, Lily, who is pregnant.

Meet Lily...she will be having her baby verrry soon...I believe the next week or so!! Here she is with Mr. Dunetz, Mrs. Dowdy and Jason

She should be foaling very soon!  Thank you all for brightening my day!!

Enjoy your weekend!

Julie

Looks like another beautiful day out there!  My hands are still thawing out a bit though after throwing the frisbee and hitting the ball for the pups.  I think I have to bundle up a bit more when I take my walk.

The good thing is that it’s 11:42 AM and I’ve had my breakfast, I played with the pups, and now I’m working on the blog (obviously).  I think the dogs figured out a way to wake me up.  Guinness starts talking and whining like he wants to go out, so I get up, open the door, stand out on the porch like a dummy saying “OK!  Go potty!  Go hurry up!”, while they stare at me.

Kathy stayed over last night after teaching at Mason, and the dogs were verrrrrrrry excited to see her!! They never sit together like this in someone's lap!! It was good to see you, Kathy!!

They turn around, walk back into the house and into the family room as if to say, “It’s time to start the day!  No more going back to sleep.”  Pretty tricky, don’t you agree?  It’s like they’re leading me outside to greet the day, then ushering me into the family room and kitchen to eat my breakfast.  Ok, Ok, they probably aren’t thinking it all through like that, but you never know! 

One thing is for sure:  I definitely did not want to go back to sleep this morning.  I had the worst nightmare I think I’ve ever had.  You guessed it:  I dreamt the leukemia came back, but I also had strange bumps all over my body which was apparently the sign of a very rare secondary cancer.  They told me I had a couple months to live, and I kept saying over and over, “I’m not ready to go.  I have too much to do!  I don’t want to leave yet.”  I also worried about the dogs, and kept asking “What about the dogs?  They don’t understand that I’m dying…they’ll think I deserted them.  What can I do to help them?”  It felt like the nightmare continued all night, and I kept repeating those comments.  It felt so real.  When I woke up, I was relieved it didn’t happen, but only slightly because the fact is that I don’t know if the cancer will come back or if I will develop a secondary cancer.  I don’t know how long I will live, and if anything did happen, then no, the dogs wouldn’t be able to understand.  I think I’ve read too much long-term follow-up material and I’m sure the medical dramas I watch (”Grey’s Anatomy”, “Private Practice”) are definitely not helpful.  I can limit the reading and perhaps change the time of day when I watch the shows, tivo-ing them and catching up in the morning.

Ronnie and my mom helped me by pointing out that this is not an unusual worry to have, and I know that.  I wish it didn’t have such a strong hold on me.  You probably feel like you’re reading the same post over and over again lately, huh?  I have no routine, I’m worried about relapse.  I guess I figured I’d write about it again because this is how I’m experiencing it.  The same worries haunt me, and I have moments when it seems like no big deal, and then I have a nightmare like last night, and I wonder how I’ll trick my mind into concentrating on something else other than cancer and its dangers.  I am so looking forward to my bone marrow biopsy/aspirate so my mind can rest for a while.

One thing that does help me is to remind myself of all the survivors out there (myself included):  Andrew, you’re on the top of my list!  I’m always thinking of you and your family and how well you’re doing.  By the way, LTFU (long-term follow-up) is looking for photos to put on their walls, and I think you should send one in!  I looked and looked for you when I was out there, but I never found a picture of you!

Katherine and Aunt Barbie, I think of you.  Katherine, I also think of Pat and Margaret.  I think of my friends in the young adult support group at Life with Cancer. Shara, I think about you.  Leslie, I think about you and Rebecca.  Jen, Sue and Rich, I think about you.  Bill, I think about your sister.  Michael, I think about your dad.  There are so many survivors that I know about…there’s no way I can include everyone on here!  Sure, they’re all different cancers, but hearing the word “survivor” is motivation for any patient.

I found this article yesterday, and I just loved the idea of healing through adventure: http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/986.  It made me excited to get out there and ride the open road….and I’ve never been on a motorcycle!!  :)  Those are some cool survivors, and I’ve added them to my list of people to think of when I get bitten by the damn worry bug again.

I also read an interesting article about cancer-related fatigue (CRF), and how it is fundamentally different from fatigue felt by the general population.   According to Dr. Wendy Harpham, “unlike the tiredness that healthy  people feel at the end of a long day, CRF is more profound and difficult to ignore.  It impairs your ability to function and is less predictable than normal fatigue, and one night’s rest does not relieve it”.  So for the meantime, I will blame some (not all!) of my sleeping late on this.  :)  While I’m at it, I might as well use it as an excuse for other issues too, because she goes on to say that CRF “has other symptoms than just tiredness, such as difficulty concentrating, poor memory, irritability, changed mood, weakness, decreased sexual desire, clumsiness, or loss of interest”.  Does it count if I was already clumsy before any of this happened? 

Anyway, I’m working on forgiving my body when it feels tired or weak, rather than constantly pushing myself to try to do more.  I guess I need to acknowledge that the transplant was only about 6 months ago, and I can’t rush normalcy.  It will come in time.  In the meantime, I’ll do my best to distract myself.  It’s all about the everyday joys:  “Joys come from simple and natural things:  mists over meadows, sunlight on leaves, the path of the moon over the water” (Sigurd F. Olson).  The “path of the moon over water” makes me want to visit the ocean or relax by a lake…what a beautiful visual that phrase creates.

OK, one last thing for today:  HAPPY BIRTHDAY, LORI!!  (and Jameson too!!!)  Lots of good wishes for a wonderful new trip around the sun (I totally stole that phrase from the song I mentioned on the blog several weeks ago )!

Love,

Julie