Love, Abbey

Abbey’s Story
So, this wasn't exactly my plan, but I suppose having cancer and going through treatment isn't anyone's plan. I do feel extremely lucky to have all the support of wonderful family and friends, and that's what I will rely upon to get me through all this. I have full confidence in my medical team that they will do all that they can to help get me healthy again. I truly believe being in Iowa City surrounded by friends, family, coworkers, and medical team is the best place for me right now. All the long distance support is VERY much appreciated, too! And visitors are always welcome.

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Posted Aug 1, 2008 2:38pm

Here's what I know so far:
I have been diagnosed with a malignant peripheral nerve sheath tumor. It's about the size of a tennis ball and is on my right sciatic nerve...it's basically in my butt. It causes me pain down my right leg (behind my knee), but mostly in my right foot. The pain flares up when lying down, in a lot of sitting positions, and if I walk too far or too fast (over a block, or attempt to walk a normal person's speed). Sleeping is difficult since laying down is so uncomfortable, it's always interrupted, and often for not very many hours. Getting around is difficult, but I have many friends willing to haul me around and drop me off at the door while they go and park.
I have still been working a fair amount, and I'm almost fully functional. The things that are difficult for me are usually performed by my 24 hour/day unpaid PCA (personal care attendant), my sister Anna. She has been an angel, never once complaining, and even making it known that she'll stick around for more (I believe "We'll go through the whole thing together" were her exact words). In addition to helping me with my foot brace and getting my shoe on, she has been cooking, cleaning, driving me around everywhere, and being my best friend. (Why can't I cook and clean? It's only my leg, right? I'm not sure...she's just jumped into those things, and once school starts for her, I'll be resuming those roles more regularily).
My friends and family have been AMAZING to me! So much support, so many cards, emails, phone calls, and visits. I feel very well supported. I'm also very pleased with my medical team. I trust they have my best interest in mind and are going to do everything possible to develop the best plan.
I will learn on Wed Aug 6th more about what the plan will be. Right now it's between performing surgery to take the tumor out (the surgeon already told me it's too difficult since the tumor is on the nerve and it would damage my nerve and affect my leg's function a lot), and going forward with medical treatment, meaning chemotherapy with possibly radiation later. I won't go into the details too much here since a lot is still up in the air.
Today I had a CT of my chest, abdomen and pelvis to look for any spreading. Tuesday I'll have a bone scan for the same reason.
I will try to keep this page updated to keep everyone in the loop. Thank you so much for supporting me through this whole thing. It's the only way I know how to get through it.

developing a plan
Posted Aug 6, 2008 11:45pm

First of all, I want to say thank you so much for all of your support and kind words! It has been wonderful to read what everyone has written to me. I feel very loved, so you all are doing a great job! I often want to reply to what I read, but they don't have that option on this page.
As far as my CTs and bone scan, I passed with near flying colors. There were just a couple questionable spots on my liver that I had to have an ultrasound for, but after ultrasound we're pretty sure they're nothing to worry about.
Today was the big day for me. I met again with my oncologist Dr. Mo after he discussed my case with many professionals, including my surgeon in order to present to me their best plan. The only way we could be sure to excise the whole tumor with wide margins (what's needed to completely get rid of the cancer) would be to take part of my pelvis (the tumor is pressed up against the bone) and amputate my whole leg. That's not going to happen. So we will attempt to shrink the tumor with chemotherapy first, knowing that this type is often not very responsive to chemo. We're going to take pictures (x-rays) after each round of chemo (I'll receive three days of chemo every three weeks...this consists of one round), and if it is shown to grow, we'll need to go to surgery then. If it stays steady or shrinks, we'll continue with chemo. I'm going to talk with the surgeon again when I can, but from what I understand at this point, unless the tumor shrinks a whole lot, he'll have to take part of the nerve. The sciatic nerve controls a lot of function, and unfortunately I would loose this function. I'm trying not to dwell on this, but I also need to know that it's fairly likely to happen this way. After the surgery I will receive radiation for 6 weeks and chemo for 6 weeks.
Dr. Mo asked me when I would like to begin treatment, and I chose Monday. That way I can have this weekend to try to have fun with my friends and family (everyone will be here on Sunday...we're having a picnic in the park by our new apartment), while prepare a little mentally for this whole thing. On Monday morning I start with an echocardiogram (one of my meds can be hard on your heart, so they want to see what my function is like now), then hopefully I meet with the surgeon again to answer questions, then at 1 pm I will have a port placed under my skin in my chest. This is a direct line to a main vein above the heart, so each time I go for more treatment, they "access the port" rather than starting a new IV. Also since the chemo is very hard on veins, this protects the more delicate veins of the hands and arms. After my port is placed (a procedure that doesn't take very long), I will be admitted to the hosptial and begin my treatment. I will have three days, so I think that means I'll get out on Thursday evening.
I will lose my hair about 10 days after I receive chemo. I hope to find a good wig by then! I was reading in one of the many helpful pamphlets, and announced to my friends that were spending time with me that I'll need a wig stand to store the wig. Anna said, "Good, because I don't want to be the one having to hold that thing all the time."
As far as what people can do for me, I'd say continue to pray if that's your style, and keep up the support. It's been great so far, and I know it will continue to really help.

In the hospital
Posted Aug 12, 2008 1:38pm

I had a really nice "last" weekend. I had a lot of wonderful company, with the highlight being the picnic on Sunday. My whole family was there execept sister-in-law Karen who had to work, and step-sister Hannah who now lives in Texas. Many friends came, we had pizza and other snacks, played some games, and told stories and laughed. It was beautiful weather, too. It was pretty much all my favorite things with all my favorite people.
Sunday evening was hard for me. It was after everyone had left and the party died down, and then I started thinking about the reality of the long hard road ahead. I cried off and on, but I had my mom, Anna, and her best friend Rachel (or our sister "Ashley" as we've decided to call her...she needed an "A" name) were there, so I didn't feel alone. Thank you all for saying how I'm strong and have a positive attitude, but that's not always the case, and I know there will be other times that are like that, too. Right now, I'm feeling back to my good-old self, and I'm ready to take this thing on full force.