Wednesday, March 28, 2007

1 down, 27+/- to go

Yesterday was my first radiation treatment. I have to say that I feel a little like a lab rat or alternatively like something out of a Star Trek movie. Because the treatements go something like this... They take me into a room with this big xray thing coming down from the ceiling and laser sighters coming out of each corner. I then lay down on the hard flat xray bed, my foot goes into the mold and then they line up the tattoos with the laser sighters and some grid coming out of the xray thing. Then once all that is done they zap my foot from two different angles which means that the xray thing rotates around my lovely xray bed. Aside from the discomfort of laying in one position it really isn't too bad, and the drive seems to be settling into about an hour each way whichI seem to tolerate (of course today I have to go during rush hour so we shall see). Bottom line is 1 down 27+/- to go. (+/- is because they won't commit to exactly how many treatements I will need, until they see how I respond to the treatments, but I am aiming to be done around cinco del mayo. So we'll have to celebrate that lovely adopted holiday)

Thursday, March 22, 2007

My first tatttoos

So, I officially entered phase 3 today with the obtaining of my first tattoos on my ankle.

Today, I made my little way to Westwood in less than 1 hour at rush hour thank you very much- note it took an hour and a half the other day ( or really thanks ot my dad for scouting alternative routes). I waited a few short minutes and then they took me back into a room and began the process of simulation. The whole things means that they took all kinds of xrays of my foot, studied the angles and decided how best to treat my foot. Meanwhile I was laying on an unpadded xray table at an awkward angle with my hips and lefty crying out for a different position while the simulator lady cajoled me to please not move, over and over again. If that sounds like fun to you, you have a warped sense of humor, but really it wasn't as bad as I thought it might be. When they were done with deciding how to radiate lefty they came her with a tattoo needle and marked the spots so they could find them again. (In an aside, the tattooing thing hurt. I have at various points in my life considered getting a tattoo, but always chickened out or let saner minds prevail. Maybe just because lefty is sore anyway, but those little dots hurt.) They then declared simulation done and you are free to go. Well, thank goodness I had a drivers, because after holding lefty in one posiiton for two hours, she hurt and I had a headache. Oh this is so fun. I start the actual treatments next week. Later than was the goal, but hey we are back on track.

Friday, March 16, 2007

Finally- good news

Well, it turns out that UCLA has decided to agree with my doctors both in diagnosis and treatment. Thank God. That information gathering thing stunk, but as long as I can get back on track it is all good. ( my mom considers that term "all good" as being code for everything is going to hell in a hand basket), but in this case it means things are back on course and phase 3 will offifically begin next week. Thank goodness

Thursday, March 15, 2007

Phase 3= Starting Over= Yikes

So, some of you have wondered why I haven't yet blogged about starting phase 3 of the cancer abatement battle of 2007, otherwise known as radiation. Well, the truth is I haven't yet been able to put a spin on it that sounds anything but whiny and I HATE WHINY. So, I'll try (although I may have to start at the beginning so bear with me) and if it is a little whiny you'll just have to forgive me.

I chose to go to New York for surgery for many reasons, I have a friend who works there who I knew was watching out for me, I really liked the doctor, Sloan is really one of the best cancer hospitals in this country and sense what I have is rare they probably have the most experience. There were more reasons, but those were the main ones. One thing it was not was convenient. A word I tried to banish from my vocabularly 3 months ago because really none of this convenient. Anyway, I went to New York and it all seemed to work out. They found no more cancer cells, I can still feel and control lefty, etc. However, once I finally decided/ was convinced that I really needed radiation- that piece always felt a little left to happinstance. It was causing me increasing unease throughout phase 2, but nonetheless I tried to have faith. My doctor got many opinions and she finally came up with two suggestions for a reasonable place to get radiation, and I chose UCLA (as the other option was in San Diego and although I am sure that I could have figured out somewhere to stay there, I couldn't quite deal with having ot leave my house again.)

So, on with the story... I have now entered a third insititution, and a second sarcoma center and they are doing what any good doctors should do when confronted with a new patient which is confirm the diagnosis etc. So, what that means for me is that I have spent all week regathering all of the information that I had to gather and send to Sloan three months ago plus the info from there. However, the difference for me is huge. Back in December, I just wanted an option 4, I wanted desparately to believe that there were better options out there and I would have done anything to find them. Now I just find this whole thing annoying and a waste of time. Both waste of time as far as delaying my start of treatment and literally a waste of time as I have spent hours on the phone this week gathering everything, confirming that it has been shipped, received etc. I am exhausted and I can't help but feel like I am reliving a part of my life that I never wanted to relive. Plus, I can't see a benefit to me in this (aside from that the doctors are being thorough, which i respect), but for me personally and emotionally I cannot question what already has been done. I had to see the UCLA surgeons this week also, who went over all of my stuff and finally declared well you had everything done right and now you just need radiation (Well, no s**t I knew that already let's get on with it). Hopefully, we will be able to get on with it by next week.

There that is my story- sorry it was a little whiny. However, I felt like I had to put it here as I really can't tell it again and after all that was a part of the reason for this little blog of mine was so I wouldn't have to tell stories repeatedly, not that I don't appreciate everyones concern of course.

Sunday, March 11, 2007


Back in my old life. I loved my shoes. I was somewhat reknown for always wearing heels to work and even ignoring OSHA and wearing my strappy sandles while walking around the unit at work. Anyways, practicallity has never been my goal with shoes- cuteness was far more important. When I was maid of honor at my best friends wedding I actually lost the feeling in all of my toes due to standing, etc. for hours in my 3 inch silver strappy shoes that I loved. So, you get my point.

Well, now things have changed. I have finally been given the green light to put lefty back in regular shoes as long as they meet certain requirements, ie. not touching my skin graft (which rules out much of anything with a back), and allows me to keep my ankle wrapped to support lefty (which will only get weaker with radiation). So, with these serious limiting factors I talked my mom into going shoe shopping with me. I spent over an hour trying on close to a dozen pairs of shoes to find two pairs that sort of meet the bills. Now these shoes are not as cute as my former standards; however, I'm not sure if I have ever been more excited by a shoe purchase in my life. Really it is more about what getting to wear shoes again represents, one step closer to normalacy.

P.S. For those of you who logged in to find out how my radiation appointment went the other day- IT WAS A DEBAUCLE, and I can't yet come up with a way to write about it. So, you'll have to stay tuned..

Thursday, March 8, 2007

What would I be doing if...

I have generally tried to not think about the answer to the above question because I think it is a one way ticket to a melancholic state that serves no real purpose other than to distract me from my goal of getting better. However, this week has had me feeling all off kilter and while I have tried to explain it as a fear of my first radiation appointment (which is tomorrow). I think that the truth lies, at least in part, in the answer to the above question because this week, this week I had something that I was really excited about planned...

I was supposed to be going back to Nicaragua for the first time in 5 years to provide medical care to the indigenous Miskito Indians of the Atlantic coast of Nicaragua. I actually reserved, but didn't pay for, the ticket the night before I found out the truth about the bump in my ankle that was removed with surgery #1. I had been planning this trip for 6 months at that point, recruiting nurses, getting supplies, planning for the best use of our time and the skills of the group etc. So, why didn't I pay for that ticket. I don't know, but something told me to wait until after my doctor visit the next day. How the mind works, really? The group is there now and have been for a week, the trip changed when I had to back out of it, but the main goal remains the same. I wish them well and have been thinking about them all week. I keep seeing images in my head of my prior trips (I have been there 4 times since I was a med student), and I can only hope that by next year I will be well enough to go. Yet further motivation to keep doing my exercises.

Tuesday, March 6, 2007

A Walk in the Hills

Let the record show that slightly less than 2 months after surgery #2, and about 3 weeks after banishing my wheelchair in favor of more independent forms of locomotion, I was able to take Sadie for a mile long walk yesterday!! I opted for my cane in lieu of the crutches, and Sadie seemed to recognize that I am not completely stable so she didn't pull on her leash and we actually managed to make the shorter circuit around my neighborhood even with a few hills. I can't even describe how happy being able to walk again makes me. It seems like the end of this whole event is drawing to a close and I really well get to do the things I enjoy again. Of course, said walk which used to take 15- 20 minutes depending on how many times Sadie stopped to smell the grass, flowers, cement etc. took almost 45 minutes last night and left me so exhausted that I had to sit on the couch for about an hour afterwards. But hey, I am not going to get stronger if I don't push myself a little, right.

Friday, March 2, 2007


I slept in my own bed last night for the first time in almost 2 months. I am so glad to be home and feel like I have a little bit of my former life back. I sat on my porch last night and looked out at my plants and dream of being able to work in my garden again. See each major accomplishment gets me one step closer to something I really want to be able to do again. I try to be patient, but patience is hard. It has been 4 months since surgery #1 now. Four months since I have been able to just run out my front door and do whatever I please without thinking about lefty. Sadie is tired of me not being able to just run out the front door too. Last night at her former walk time, she sat in front of the cupboard where her leash lives and cried. It was pitiful, she seems to think that she should have her former schedule back now that we are home. I tried to explain it to her, but who am I kidding - she is a dog after all. Well for today we are both happy to be back home as I sit in my kitchen and look out at Spring blooming in my garden and Sadie sleeps on the couch. Home again indeed.