Hello there!! I intend for this electronic project to keep my friends and family in the loop with what's going on with me, my nervous system, and cat. Thanks for swinging by on my vine.
Hello friends and family!!
Here's a quick update for you. As you may know, I finished radiation treatments on Thursday. I had a big batch of mixed feelings about it, which surprised me. I've been doing a lot of sleeping and I can tell that my body is busy cleaning house. Go team macrophage! I hope to play some flute today, sightreading with strangers, so I am just doing a quick update as my mind seems to have a limit to how much it can stand to process before I need another slar phase.
As I'm feeling more sustained energy, I will be returning with more tidbits. If you have any wonderings, please send them to my email or post them in a comment below and I'll do my best.
This morning I am briefly addressing some commonly asked questions, by providing pictures and captions....take care!
Here I am just after my final, 31st, radiation treatment. In my right hand is my rad mask and in my left is a nice certificate from the staff and doctors at the radiation oncology temple. photographer: Gale D. Lasky
A lot of folks have asked about my hair changes...here's my right side, this is also my surgery side. Amazing how great it looks just 2.5 months after a craniotomy. I'm pretty much a punk rock girl at heart in a Dead Milkmen way and now it shows even more. photo cred.- GLD2
Left side, not as much as the right as this area had less of a dose, good thing too, as I'm using that side of my brain RIGHT NOW for a lot of things and so are you too I bet. photo cred- GLD2
Pop that hair down like normal and I look just like me, except for my tanning bed look, which should pass.
Thank you all for your love and energy, it matters so much to me. I hope that you are all having a memorable to great Memorial Day weekend!
Wow, can you believe its already May 18th, 2011? I'm pretty impressed by how the dates click by these days. Things have been rolling along just fine in my world lately. Radiation treatments Monday-Friday, oncologist appointments on Wednesdays and also I do most of the other things folks do, but with a great flow of friends and family visiting and taking care of me.
Not much is necessarily new as far as nitty gritty details. I only have 6 treatments of radiation left, I can't believe I'll graduate from radiation therapy next Thursday. Then I'll get an MRI 6 weeks after that, they have to wait a while so the swelling in my brain goes down from the radiation. Then I'll see my neurosurgeon regarding the MRI and what's what. It will be nice to start recovering from radiation and to continue recovering from surgery so that I can have more stamina for the joys of summertime. Yes!!!!!
In an earlier post I'd mentioned how there are different and new levels of tiredness. I have a new classification and its called: Uncomfortably Exhausted. My brain is a nice brain, its been really well behaved for 2 surgeries all the way inside it and a WADA test, is full of creative ideas, can operate my limbs to do various tasks and play music. Some confused cells called astrocytes made a scary brain tumor, that's not so awesome, but overall my brain is pretty amazing, as are brains in general I think.
These days, if said brain is uncomfortably tired and I'm pushing it, it gives me signals that I need to go lay down and shut my eyes. A signal could be: a lack of detail in my vision, an odd motion processing (someone gliding even though they are walking), misplaced emotions, or absolutely no attention span.
I think I have been getting so uncomfortably tired from radiation that it put me on a slippery slope toward some "stinkin' thinkin'". I also have to confess, that rash that I had, it really sucked for me and those around me. It seems as though there are a lot of people going through some heavy health stuff right now, and we're all around the same age, and it made me sad and feeling powerless. Everything seemed all at once. I had a pretty decent pity party for myself early last week, nope, you didn't get excluded from the Evite, I do that kind of partying by myself and its over now, so don't worry.
After my 1st brain surgery/tumor discovery in 2009, I had a hard time with future thinking and planning, but it wasn't a cognitive ability issue, it was a thinking error problem. I worked pretty hard with a professional to adjust to things, and that helped, but I regressed a bit last week. I enjoy setting long term goals and achieving them to some measure. With having the health surprise, thinking about where I want to be in 5 to10 years changes from "a house, a family, teaching and/or dog" to "here??" breathing?". It throws me off my normal thinking that I'd had for 30 years, it takes a while to adjust to the unknown and get into the flow, but thankfully I'm back in it for the most part.
I felt better as I had some great visitors, wonderful correspondence, a fantastic weekend, clear skin, love, friendship, cat purrs, music, going out to a movie, music playing, fun plans set, and lots of other good healing magic, everyday miracles and self-compassion.
Last summer, I read Sarah Silverman's memoir and of course it was funny, but I also liked her mantra "Make It A Treat" (M.I.A.T.). Well, you know what yanks a girl like me out of a slump? I use her M.I.A.T. method and it picks me up in small to large ways that all add up like a big pedestal of happy and adds so much to my outlook and output of energy. Sarah S. was referring to pot or chocolate cake, but for me....
Here are some treats that I appreciate and relish often and/or lately, in no particular order:
Lemon water
The Cosby Show
looking forward to summer fun such as weddings, music, visits, Pickathon, nature, the list goes on...
playing flute with recorded music of bands I like and just waiting for them to call me to play some fantastic show (this can also be classified as DAYDREAMING and its fun!)
Letters from my in town pen-pal and real life friend G.E.S.
Surprise snail mail and thoughtful S necklaces
Visitors
Smart jokes and laughing
Going to the head shop "Up in Smoke",(so subtle isn't it?) for incense with Susie or Leslie and ALWAYS leaving with a giggle inducing story to tell...
attending social events that I wasn't sure I'd be able to weeks ago!
Scrabble online
FRIENDS
FAMILY
My wonderful neighbors!
YOU
Thank you for your support and thoughts, I feel so blessed and you help me rise out of valleys up into the happy blue skies!! I hope that you are well!
xoxox,
Sara L.
Bonus Round...
Here are some photos and captions from the recent past of my wonderful life.I am struggling a bit learning how to get my "smart" phone to give me all of its photos.
Susie blessed me with the Monday night (slumber party) shift and Sam is a tireless Tuesday morning driver and breakfast BFF.
Here's when they did the responsiblity hand-off. I love laughing with these two!! I love my friends 110%!!!
My mom and Erin. Erin is so sweet, she came by with delicious items after a long day of teaching at the middle school we usually inhabit together. It is such a treat to get to spend time with her and I'm so excited about the fact that she and her hubby have bought a house just about a mile away from mine.
This is me pre-rad with Mateo, he was born on 2-13-2011! His parents, Gabe and Koali, they treated me with Thai and their company.
Fantastic!
Here Gary D. and I are in St. John's. This is on a Saturday about 3 weeks ago. I was really impressed and feeling happy that I was able to attend a science teacher workshop at PSU for most of that day. Science teacher friends attended the workshop and were extremely helpful in making it a successful day for me. Gary D. drove me back and forth and was happy for me too, because he knew it would make me feel accomplished. It was a treat to be productive and then to meet up with friends afterward. It felt like real life and I can still live it! I love it!
Leslie took me to get my zip zaps in a ZipCar...I felt this a treat for the alliteration and the opportunity to show you the "reserved for radiation treatment patients" parking spots.
Michael and Desiree made my week last Thursday by bravely driving themselves and their fresh to the world son, Colin Patrick (born March 28th, 2011), to visit with me. I really appreciate them taking a chance and driving all the way here from Yamhill County with their new addition. So brave, huge TREAT. It was a nice long visit and I'm still smiling from remembering it!!!!
That's me and the linear accelerator that I spend time with Monday through Friday at 9:06 AM.
Susie VOTES!
Lilly Lasky, my parents' dog, visits. She's pretty handy for walks.
Scott and Kiyoe have generously given me a key to their house so I can visit Eastwood during the day. I haven't gotten to see him as much as I'd like to, due to my demanding napping schedule, but we've had some great playtimes in his backyard and we took him to Forest Park for a short hike. That's fun and a definite cheer-us-all-up treat.
Saturday was Hanna's 30th party...which means that she hosted her friends to celebrate at the Historic Kenton Firehouse. It was a Tretti Ars, which is a traditional Swedish celebration for the 30th birthday. It was amazing. I napped all day Saturday until 4:30pm so I could go, and it was worth it! Gary and I got all dressed up. Amazing friends to catch up with, an exuberant and loving friend to celebrate, the food was WOW!, and I will stop now, I don't want to be too much of a braggart. It was amazing and I'm thinking of making up a Swedish festival for the age 34 for my birthday in September.
The beautiful birthday girl Hanna, Gary D., and moi saying our end of the (my) night; out living our lives! I am pretty sure I didn't get to bed until after 10...what a thrill!
Leslie and Jocelyn's band rocked Mississippi Studios Sunday afternoon. Friday, Leslie went to camp (Ladies Rock Camp) having never played the bass...by Sunday she was making Slash look like an amateur with her performance! I am so proud of her and I was so thrilled to be present! Way to go Leslie!!!!!!!
Susie blessed me with the Monday night (slumber party) shift and Sam is a tireless Tuesday morning driver and breakfast BFF.
Here's when they did the responsiblity hand-off. I love laughing with these two!! I love my friends 110%!!!
My mom and Erin. Erin is so sweet, she came by with delicious items after a long day of teaching at the middle school we usually inhabit together. It is such a treat to get to spend time with her and I'm so excited about the fact that she and her hubby have bought a house just about a mile away from mine.
This is me pre-rad with Mateo, he was born on 2-13-2011! His parents, Gabe and Koali, they treated me with Thai and their company.
Fantastic!
Here Gary D. and I are in St. John's. This is on a Saturday about 3 weeks ago. I was really impressed and feeling happy that I was able to attend a science teacher workshop at PSU for most of that day. Science teacher friends attended the workshop and were extremely helpful in making it a successful day for me. Gary D. drove me back and forth and was happy for me too, because he knew it would make me feel accomplished. It was a treat to be productive and then to meet up with friends afterward. It felt like real life and I can still live it! I love it!
H
Leslie took me to get my zip zaps in a ZipCar...I felt this a treat for the alliteration and the opportunity to show you the "reserved for radiation treatment patients" parking spots.
Michael and Desiree made my week last Thursday by bravely driving themselves and their fresh to the world son, Colin Patrick (born March 28th, 2011), to visit with me. I really appreciate them taking a chance and driving all the way here from Yamhill County with their new addition. So brave, huge TREAT. It was a nice long visit and I'm still smiling from remembering it!!!!
That's me and the linear accelerator that I spend time with Monday through Friday at 9:06 AM.
Susie VOTES!
Lilly Lasky, my parents' dog, visits. She's pretty handy for walks.
Scott and Kiyoe have generously given me a key to their house so I can visit Eastwood during the day. I haven't gotten to see him as much as I'd like to, due to my demanding napping schedule, but we've had some great playtimes in his backyard and we took him to Forest Park for a short hike. That's fun and a definite cheer-us-all-up treat.
Saturday was Hanna's 30th party...which means that she hosted her friends to celebrate at the Historic Kenton Firehouse. It was a Tretti Ars, which is a traditional Swedish celebration for the 30th birthday. It was amazing. I napped all day Saturday until 4:30pm so I could go, and it was worth it! Gary and I got all dressed up. Amazing friends to catch up with, an exuberant and loving friend to celebrate, the food was WOW!, and I will stop now, I don't want to be too much of a braggart. It was amazing and I'm thinking of making up a Swedish festival for the age 34 for my birthday in September.
The beautiful birthday girl Hanna, Gary D., and moi saying our end of the (my) night; out living our lives! I am pretty sure I didn't get to bed until after 10...what a thrill!
I've passed the half-way point of radiation...14 more doses to go! Things have been going pretty well overall. I definitely am more limited with energy and sustained focus, which can be frustrating.
It leaves me with many unfinished to-do lists, piles of magazines and books left unread, thank you cards are at a 3-8 day later than normal post, and I don't even enjoy the television all that much either. Why watch television, when you could be sleeping or writing an overly ambitious list of tasks I need to complete, right?!
Even with new challenges, here are some selected triumphs that have occurred over the last few weeks:
I have:
enjoyed several unsupervised stand-up showers (very exciting!)
saved some money with my coupon clipping hobby.
attended to Katie for her wedding dress fitting .
played flute and piccolo for a short Opera Theater Oregon performance.
clipped articles from the newspaper and marked Gary Larsen "Far Side" cartoons to use in my classroom.
limited my news media intake during the royal wedding and other world news events.
walked farther.
read half of Tina Fey's Bosssypants.
did the dishes and operated the vacuum without incident.
It's not all fun and games though, here's some things that have happened that have been character building for me and my primary caretakers/handlers.
Some shedding...
May 4th, 2011 Tub Time
My hair at the spot that gets the most radiation...well, its gone and going this week. I was feeling more curious about it than sad or bummed out. I was thinking, okay, well now I know what its like to lose some hair...and I have a state fair worthy comb-over. I knew it was coming and was tired of waiting for the shedding to start. It was a relief to me for this to start happening as they can never tell you how much or where it'll happen. My oncologist and radiation therapists had educated guesses that seem to be pretty correct so far.
I quickly learned that I need to be a little more sensitive though, as people who love me don't appreciate my "hey! check it out!!" attitude to my piles of hair that I take out to the yard for the birds to make their nests with.
Sometimes I can see that some of this stuff is easier on me than those who have to watch me go through it, well actually I feel that way often, but not all the time, but when I feel that way that's hard for me too very much.
Cinco de Mayo: Dermatitis es no fiesta.
It feels like poison oak.
Thanks to Tara P. for my fly "S" necklace!
So, one thing we've been really careful about is my skin. With the radiation, its really important to take care ofthe epidermis. Basically its getting a sunburn Monday-Friday with the radiation, so its pretty important to take of it or we may get off schedule for the radiation.
We've been using 100% aloe with distilled water in a spray bottle and Miaderm (an expensive radiation relief cream that is available at the oncology pharmacy). The 100% aloe has to be refrigerated, so we bought another aloe gel from New Seasons that I can take around with me. Well, forget that stuff, because I got a nasty rash and welts all over my face, neck, and ears. It feels like poison oak and has made things really difficult for me (and my caretakers...).
When I showed up for my daily rad treatment, I got diverted to the examination room within moments. Photos taken of my condition and at one point I had the attention of 2 oncologists...I love attention and all, but yikes!!!
I've been airing my face out, taking loads of Benadryl and having minor crying jags from my swollen and hot face and huge red crusty ears. They said to try some over the counter products after the initial airing out. Walgreens sold some Benadryl gel and cortisone cream yesterday...fantastic improvement ! Its been getting better. Still super itchy and I'm loaded on Benadryl pills and cortizone so I don't scratch my face off, but I hope that things continue to get better with this, really thankful the reaction isn't happening on my scalp.
What else?
Gary D. applying the 100% aloe/distilled water magic potion, the good stuff! That's my regular part, not the bald spot, yet?
He and my mom had the great idea to put it in a squirt bottle. Thanks Nurse engineers!!
That's me with rash playing flute with OTO. I can't believe I did that.
This is my mask..the tape and markers show the fields of radiation and their entry points, keep in mind that the radiation also exits through my brain. The machine is a linear accelerator. This shows my right side if you need help orienting yourself. Also, my nose is the point.
More fields.
Left fields (find my nose point as a point of reference)
I'm getting very tuckered out from this so I'm going to be done with it even though there's more I could share.
Special thanks to those of you who have:
reached out to me through email, postal mail, visit, or phone
driven me to radiation treatments
delivered meals, treats or yourself to my house
invited me to activities even though I'm not at my tip top shape
been patient of my inability to commit to plans due to my tiredness
given me a key to your house so I can visit your dog during the day
sent me healing thoughts, spells and prayers
let me have the best seat
driven and helped me with errands
helped me keep track of my finances and stay organized
been forgiving with how sporadically I post blog entries
made me smile with your good humor, caring and friendship. It really gives me a nice little vacation from cancer treatment hardships.
Take care and thanks!
xoxo,
Sara L.
p.s. Here's a favorite blog of mine these days...I can really relate to this Samantha K.
