L is for laser

I had my first radiation treatments today. It was painless but very strange to have lasers pointed at my ankle - kind of felt like a bad sci-fi horror film. My schedule will be 8:50am Mon-Fri, except New Year's Day. This will last about 6 weeks. I also meet with my radiation doctor every Monday so he keeps up with my progress. This week Bud is watching the boys and next week I will drop Jake at Bud's work , but by week 3 I may need drivers and babysitters - I will be making calls or emails soon. Sorry to my loyal fans that I have not posted for a week - very busy with Christmas and then my brother got married on Saturday - both were filled with wonderful moments!

L is for little tattoo

This morning I had my simulation appointment for radiation. They did a CAT scan of my ankle and created a foam impression that will hold my foot in the same position for each treatment. They also gave me 3 tattoos. Pictures of my right ankle - the tattoos are the tiny dots - the marks are permanent marker to help them find the dots. If you ever wondered if a tattoo on the ankle is painful - I can say yes! The other picture is of the henna I had done on my left ankle when I turned 40 - much less painful and fun! I also braved driving in the snow and ice - I have done this many times in Wisconsin so it does not make me nervous - it is the other drivers I worry about. Very beautiful to see everything covered in snow - I have been trapped in the house for a week with 3 boys so I was a little giddy to get out and thought it was funny to have my break be at the doctor - I always try to pretend I am at the spa!

L is for List of Songs

I have 72 songs that have been suggested to me or are the ones I like to listen to right now - some of them are from my boys - I am really enjoying the variety. I have not even started to fill my ipod so keep the songs coming! I don't add every song given to me - I don't have an unlimited itunes budget and sometimes it is easier to remember one or two songs that were sent to me - I really like thinking of the person who suggested the song - I am very loved! The following list in in alphabetical order by song with the artist.


Ain't No Sunshine Buddy Guy & Tracy Chapman
All I Ask Of You Lesley Garrett & Chris Corcoran
Always On Your Side Sheryl Crow & Sting
Angel Shaggy & Rayvon
Angels We Have Heard On High VeggieTales
Bad Day Daniel Powter
Brand New Day Sting
Breathe Ross Parsley
Chicago Sufjan Stevens
The Chipmunk Song (Christmas Don't Be Late) Alvin and the Chipmunks
Count Your Blessings Mark Lowry
Dare Stan Bush
Daydream Believer The Monkees
Don't Worry Be Happy Bobby McFerrin
Dry the Rain The Beta Band
Everybody Needs A Rainbow George Burns
Everyday Is A Winding Road Sheryl Crow
Feeling Good Nina Simone
Free Fallin' Tom Petty
Give a Little Bit The Goo Goo Dolls
Go the Distance Lucas Grabeel
God With Us St Philip Church
Great Is Thy Faithfulness Chris Rice
Healing Rain Michael W. Smith
Here Comes the Sun Beatles Abbey Road
Hungry Like The Wolf Duran Duran
Hyper-Ballad Björk
I'm Letting Go Francesca Battistelli
I'm Not Who I Was Brandon Heath
I'm Ready Angela Michael
I'm Yours Jason Mraz
I am wonderful Pat McCurdy
I Just Wanna See Smash Mouth
I Will Not Be Moved Natalie Grant
I Will Survive Gloria Gaynor
I Won't Back Down Tom Petty
If I Could Turn Back Time Cher
It's A Small World Baha Men
Joyful Sound The String Cheese Incident
Just Can't Get Enough Depeche Mode
Just The Way You Are Billy Joel
Kids In America No Secrets
Lean On Me VeggieTales
Let It Be The Beatles
Love Me Good Michael W. Smith
Make Someone Happy Jimmy Durante
The New Carissa Harry Stamper
Open The Eyes Of My Heart Paul Baloche
Praise You In This Storm Casting Crowns
Raindrops Keep Falling on My Head Burt Bacharach & B.J. Thomas
Ripple The Grateful Dead
See You Again Kidz Bop Kids
Shout Tears for Fears
Smile Jimmy Durante
Stand Jewel
Stillness - Speak to Me Aaron Shust
Stomping Grounds Béla Fleck & The Flecktones
Streets of Gold Robin Williams & Linda Williams
Strong Tower Kutless
Sunshine On My Shoulders John Denver
The Sweet Escape Gwen Stefani Feat. Akon
Three Little Birds Bob Marley & The Wailers
Top of the World Carpenters
The Touch Stan Bush
Tubthumping Chumbawamba
Walk On U2
What a Wonderful World Louis Armstrong
Who Am I Casting Crowns
Wild Boys Duran Duran
You Raise Me Up St Philip Church
Young At Heart Jimmy Durante
100 Years Five for Fighting

L is for Radiation???

I met my radiation Doctor in Salem today. He was very nice and very confident in the effectiveness of radiation. They will do the radiation simulation on Dec 22nd and then start radiation on Dec 29th. I will need 33 treatments - about 7 weeks Monday - Friday. They will try schedule for morning appointments. He is not very worried about me being fatigued but said the skin around my ankle will hurt and might want to have a cane to walk about 3 weeks into the treatment. Merry Christmas and happy last minute shopping!

L is for lasting memories

After I found out I had cancer I cried for 3 days and then decided to tell my boys. I did not want them to hear me talking about cancer and be afraid. I have decided if cancer is not a secret then it can not hurt me. I had to stop crying to tell them so they would not worry - they all took it very well and were back to playing like normal in no time. I am always amazed how kids just roll with the punches. I have also been trying to find a moment each day that I can say this was a great day and thank you God for this moment. On Sunday we had snow - this only happens once a year in Dallas, Oregon and then usually not enough to play in - so we made sure we made the most of it and made a snowman. As you can see these are pictures of my boys - my three bright lasting memories everyday! That snow has now melted and been replaced by snow that is too dry and cold to build anything - grab those moments when you can. The boys are on their second snow day off from school and getting bored - time to work on my moment for today.

L is for lagging appointments

I finally got a call from Salem Hospital about my radiation treatments. I have an appointment for next Thursday Dec 18th for a consultation. Of course the appointment is in the morning when Jake's pre-school is having their Christmas party - Bud will cover this for me, but it makes me sad to miss this special time. I will then need to have an appointment for a simulation of my radiation and then they will schedule my radiation appointments. I am discouraged because I made the decision for radiation over a week ago and now I have to wait. I am not worried about the cancer spreading, but anyone who knows me knows I like to plan and this is slowing my planning process. I know that it will go smoother if I just relax and wait for their schedule - I will just listen to my music when I get nervous. Thanks again for all the prayers, songs, offers of help and emails of encouragement.

L is for lovely gingerbread house

L is for latest results

Good News! My PET scan is clear - this means that cancer has not spread to my nodes. I still need to do radiation in my ankle and am still waiting for that schedule. I will need to go back to OHSU in four months to have CAT and MRI done - this will happen for the next 3 years. My Aunt Susan went with me again and we stopped for dinner at a salad buffet - yummy! Joyce stayed with the boys and Jim and Jeanette are on their way back to Elkton.

L is for listening

Fun news first is that I got my ipod today and have been happily listening to all the songs suggested for me. Thanks - keep the songs coming! I went to OHSU today for my PET scan. I had to not eat for 6 hours before my scan which was at 2pm - so I had to not eat after 8am. Anyone that knows me well knows that I get cranky when I am hungry, but I did pretty good - the hard part was lunch with Jake before I left - he really wanted me to eat something - so I had to listen to him complain about me only drinking water. Jeanettte was kind enough to drive me and my Dad stayed with the boys for the afternoon. Before the scan they inject you with radioactive glucose and then tell you to take a nap for an hour - also anyone who knows me knows that I do not like naps - he would not even let me read my book or listen to my new ipod - so I had to listen to silence. The PET scan would have gone smoothly except that the computer would not listen to the tech - so it took four trys before he could get it to start - I had to lay still with my hands over my head for at least 1/2 hour, but this machine makes no noise compared to the MRI. You have lots of time to think when you are in these machines, but you are supposed to relax - I of course thought about my cancer - I felt really good that I made it to 40 years old with any surgery, now I have had more tests done than I ever imagined would happen to me - life changes so quickly. I saw my radiation doctor in the hallway and he told me that he did call Salem Hospital - now I just get to wait for them to contact me with my radiation schedule. I know that God is listening to all your prayers! Thank you!

This week L is for loathing

I am not looking forward to this next week - more waiting and worrying. I have my PET scan on Monday at OHSU and then find out the results on Wed at OHSU. I am waiting to find out my radiation schedule and might have some appointments this week. Bud leaves this morning for a conference all week in Las Vegas. Jim and Jeanette arrive tomorrow to stay with me and the boys and then on Wed Joyce will switch with them for the rest of the week. The one thing I am looking forward to to making Gingerbread Houses with the boys and my Aunt Ginny on Thurs. We are busy decorating the house for Christmas and the boys always make that fun. I want to focus on enjoying that with them. Keep those prayers and songs of encouragement coming.

December 4 2008 - Inspiration!

I have been trying to stay up beat and strong through this whole experience, but I need help to keep going. I am getting an IPOD and I want to load it with songs from all of my supporters - I am thankful for all of you! Please email or put in the comments what your inspirational song would be - if you were in my situation what song would you want to hear to keep you positive - I don't want you to worry about if I would like the song or not - it will just be fun for me to think of you when I listen to the song or songs.

December 3 2008 OHSU revisited

Aunt Susan and Jim went with me to OHSU to find out my MRI results and the next steps for treatment. We met with the orthopedic surgeon first and he said the my ankle and foot MRI shows no more tumors, but from the tumor they removed they could see on the outside margins that there were cancer cells, so the know that there is still cancer in my ankle. They are not able to just remove those cells because they are microscopic and they like to have a 1 inch clean margin around the tumor site - I know that I do not have an inch to give on my ankle because they would run into bone and other stuff that I need to walk. He said that I should take action soon by either amputation or radiation. He wanted me to decide in the next couple of days. He also said that there were no statistics to say either option would cure me. He said if it was his ankle he would start with radiation and then have amputation as the back up plan if tumors came back. The radiation specialist said the same things and also said with radiation it could cause shrinkage of the fluid around the ankle so that it is stiff and painful to walk, but that may not appear until 5,10, 15 years. The main side effect of radiation is tiredness - I am already tired all the time with 3 active boys - so this should be not big deal -ha, ha! I would need to receive 33 treatments 5 days a week starting soon, but I could go to the Salem Hospital for the treatments. I did sleep on my decision and have realized that I like my foot and ankle and will try to keep them around as long as I can. I have now made future appointments for a PET scan - will check my whole body for cancer and also the appointment to review the PET. I will post those when they happen.

November 26 2008 OHSU

Aunt Susan, Jim and Jeanette went with me on this adventure. Bud came home early from work and we were on the road by 1pm. We got there in time for the appointment and then waited for 45 minutes to see the doctor - but we had a beautiful view of downtown Portland! I first met with the orthapedic surgeon and he talked about synovial sarcoma being a soft tissue cancer and that synovial sarcomas are rare only 15,000 cases a year in the US. He reviewed my CAT scan and said that my lungs were clear - whew! He also said that I would need a CAT scan every 4 months for a least 3 years. He said he needed to see an MRI of my foot and ankle before we could really talk about treatments, but options could be amputation, radiation, surgery, or chemo or any combination. Next we met the Chemothearapy Doctor who said that my tumor was small and since my lungs were clear that I did not need chemo. I said "Nice to meet you - goodbye!" They decided that I would wait to meet the radiation specalist after my MRI. They were able to schedule my MRI for 9pm that night - my support group said they were willing to wait it out - it was 4pm - so we had 5 hours to have fun. We actually had a wonderful night on the town - we rode tram down the hill (the view was beautiful at sunset) and then we took the streetcar to Powell's book store, but decided we needed to eat first so we went to Noodles & Co for a nice meal, we then browsed and bought books. Susan knew of a cupcake place down the block so we decided we had time to get some sugar! Unfortunately it was closed, but Ben and Jerry's was open. Susan and I both did not have coats and it was cold, but we still both got ice cream that we ate as we walked to the streetcar stops while the cold wind blew. Each streetcar stop showed the time until arrival so we walked about 7 stops before I said "Stop!" We only had to wait 5 minutes and then we got back to OHSU early for my MRI. I checked in at 8:30pm with the expectation that it would take 1 hour. They did not finish with me until 11:15pm. I was very disoriented and ready to go home. For those of you that have not had MRI let me tell you that they do not hurt, but they make very loud strange noises and the music in the room I was in kept cutting in and out so I had to come up with distractions for myself and at the same time not move or even wiggle my toes. I wish I could say that I slept and had peaceful dreams. And by the way this was the day before Thanksgiving. Bud and William were flying to Chicago very early the next day and I was headed to Coos Bay with Jake, Luke, Jeanette and Jim.

November 21 2008 Stitches

Went to Salem to see surgeon for post-op appointment and to remove stitches. He and his nurse were very kind and supportive of my situation, but he did mention the possibility of the cleanest way to not have cancer would be amputation - What???
The stitches came out easy and now when the boys see my ankle the say it looks "freaky" - makes me laugh and I need that.

November 20 2008 CAT

In the morning I received a call from the oncologist in Salem. He told me that he wanted me to skip my appointment with him and go to OHSU instead to meet a team of sarcoma specialists. He also said I needed a CAT scan of my lungs because 85% of the time if sarcoma spreads it goes to the lungs. Jake was in pre-school again that afternoon so I was able to schedule the time. My neighbor Susan had asked if I wanted to go shopping in Salem to keep me busy and not think about the cancer - she was nice enough to still go with me to the CAT scan - we were able to get a little food treat at the mall before going to Salem Hospital. The CAT scan only took 10 minutes and was painless. We waited longer to get a copy of it on disc and then realized we needed to hurry up to get Jake so I decided to come back the next day for the disc. Never a dull moment!

November 18 2008 The News

It had been one week since my surgery, I had just picked up Jake from pre-school and was driving home to be in time to get William and Luke off the school bus and then I received a call from my surgeon. He told me that he "just about feel off his chair" when he read the results of the biopsy. He told me that I had synovial sarcoma and that he wanted me to call an oncologist in Salem. I quickly wrote all the information down, after I dug through my car looking for paper and pen. I had to compose myself and get the other boys off the bus. I am very fortunate to have a wonderful neighbor who I felt comfortable telling right away. I made arrangements with her to watch all the boys with her kids so I could make phone calls and research on the net. I think I was in shock most of the day and it took until the next morning to actually make an appointment with the oncologist for the next week. The hardest part of the day was waiting for Bud to come home so I could tell him the news - it had only been three weeks since we attended the funeral of his dear father who had died of cancer. Lots of tears that night. It still took me a couple of days before I was able to break the news to my family and my boys - they are so wonderful. It is still hard to shock people with the news.

November 11 2008 Ankle Surgery

It was Veteran's Day and William, Luke and Jake were off from school. I had surgery on my ankle - the doctor's first thought I had bursitis ( I first noticed the bump around October 2007 but took me some time before I made the time to see my doctor) , but after a cortisone shot did not last they sent me to an orthopedic surgeon who said he thought it was a ganglion cyst and he could remove it. The doctor discovered it was actually a tumor, but he told Bud that he thought it was benign - he still sent it for tests. I enjoyed my few days off as a Mom during my recovery - Jim and Jeanette played with the boys and Bud brought me food and pain killers, I read books, watched TV and slept at all hours of the day.