Spring is here!

Our trip was good. The kids had a great time and were sad to leave! Avery had the best 6th birthday... breakfast with the princesses (she thinks they were real), Epcot, Bibbity Bobbity Boutique (got all dolled up like Sleeping Beauty), Magic Kingdom, and finally crashed at the hotel at midnight! :) Drew dressed up like Buzz Lightyear that day, but was sure to reassure people that his name was really Drew and that he was just dressed up in a costume. We had nice, warm weather all week, too!

I started my shots on Monday night. The shots are easy... actually, painless! Unfortunately, it was a VERY rough night. Having a week off had something to do with it. I was awake all night with severe body aches, chills, and fever. Tylenol and benadryl didn't even touch it. I ended up in bed most of the day on Tuesday. Needless to say, this was quite a blow for me and all night I worried and feared that this would be life for the next year! The good news... I talked to my doctor yesterday. He suggested I start taking Lorazapam to help me sleep. I took it last night with Tylenol and last night was dramatically better! I slept better and only had minor body aches and a low-grade fever. Yeah! (He's mailing me a Rx for oxycodone, too, if I need it, but I really hate narcotics!) So, right now, I'm on a serious mission to get a good "cocktail" that will help me through this. I'm going to go back to the Acupuncturist to help with my energy level and side effects. I'm also seeing my Physical Therapist today. My back is seriously screwed up and I have so much tightness and discomfort at the site of my surgery. I'm actually looking FORWARD to the pain because I know it's going to help so much!

On a positive note, I had a LOVELY day with the kids yesterday. This spring weather is really picking up my spirits! Drew and I went to his Little Gym class yesterday, then came home and played outside and had a picnic in the backyard. We picked Avery up from school and went for a bike ride. The look on Drew's face when he was riding his new bike with training wheels was priceless! Then, Avery started soccer last night. Most of the kids are Kindergartners from Stoner Prairie, which was fun! The best part of yesterday was that I actually felt like a NORMAL mom... all I've wanted for some time was just to live a normal life again. I feel like I'm getting there. :)

O.K., gotta run to PT. Will update more later!

xoxo
Kim

3 treatments to go!!! Yeah!

I haven't updated my blog (and never got around to starting that new one). I've been feeling very rough lately and haven't had the energy to update as much. I've been considering the day a "success" if I don't spend the whole day/night in bed!! Yesterday, I spent most of the day in bed and finally gave up at 7:00, took a benadryl, and went to bed for the night. Today is the best day I've had in awhile. I attibute a lot of it to seeing my acupuncturist this afternoon. She has really helped me in managing my side effects, especially the headaches. After I see her, they are gone for about a week! I have a lot of weakness in my legs and feel SO incredibly fatigued every day. And, the lovely flu-like symptoms are just so much fun... they typically hit me late afternoon- early evening. But, the GOOD news... only THREE treatments to go and then we're headed to Florida... Magic Kingdom, Epcot, Sea World, the SPA (just Todd and I, of course), the pool, and most importantly, lots of warm weather and relaxation! :) I'm not going to start my shots until I get back from our trip, so I'm SO looking forward to having the week off! The shots will be half of my current dosage, three times a week. I will do the shots before bed, so hopefully, I sleep through the side effects. I don't know what I will do being away from UW Hospital for a whole week! Since my surgery, in December, I have been at the doctor, for a follow-up appt., random doctor's visits, scans, lab work, physical therapy, radiation treatment, or chemo clinic, almost every single day!! I can't wait to wake up in the morning and NOT have to drive to the hospital!!! I promise that I will be spending some mornings bumming around in my pajamas with my coffee, for sure!

So, right now, my focus is on getting through these last 3 treatments and then time to CELEBRATE!!! :)

Kim

Update/ New blog

I am going to start a new blog on a website called Caring Bridge. You will be able to be notified each time I update the blog on that site. I will post the address here when I get it set up.

To give you a very brief update... my labs looked great on Friday. It seems that my body is tolerating this new dose better. So, hopefully, things will be smooth sailing the next two weeks. (We're planning to still go to Florida, just a couple days later than originally planned.) Side effects were not fun, but manageable... fever, body aches and chills. My headaches are GONE, thanks to the acpuncturist I've been seeing! YEAH! :)

O.K., I'm going to go enjoy the beautiful weather with the family, but wanted to give a quick update! :)

Kim

one last thing

I didn't post on Friday, but my liver functions were getting back to normal... one was back in the normal range and the other was still on the high side, but probably back to normal by today. He's not going to check my labs again until Friday. They also decided to leave the IV in... they will take it out and reinsert a new one every 2-3 days. They had to poke me three times today, which is really annoying and painful. They can only do IV's on my left arm (they can't do any needle pokes in my right arm due to having my lymph nodes removed). So, hopefully, my hands and arms won't be covered with bruises with now!! :)

Kim

Back on the train...

I started my treatment back up today. It still blows me away that I have to WAIT SO LONG! Today, I was there for 3 hours for a 20 minute infusion! But, the good news is that my side effects haven't been too bad today. I was worried that it was going to be like starting over after having a week off. I have a mild headache and generally feel a little achey in my joints. But, it's managable! He reduced my dosage by 1/3, so I'm hoping my body tolerates the rest of the treatment better this time around. I will keep you updated! :)

Kim

same old, same old...

No treatment again today... my liver functions are going down, but still not in the safe zone. Will go back on Friday to check them again. Needless to say, I feel very frustrated to miss an entire week of treatments and have to start over again. I will keep you updated...

Kim

update from Albertini

After I posted, I got a call from Dr. Albertini to discuss my liver function. He doubts that things will be in a safe zone for treatment by Wed. I will go in for my labs on Wed. and then, most likely, come back again on Friday, to recheck again. When we do resume treatment, he will cut the dosage back by a third. The current dosage is obivously just too toxic for my body.

So, now I'm looking at no treatment all week! This is bad because now we're starting to talk about how to make up that time... and the obvious option is to keep going when our trip to Florida is scheduled. I just want to be DONE! I don't want to sit and wait around for my numbers to get back to normal!!! I feel very discouraged and frustrated!

Kim