On again

I started chemo on December 8. The same day I went back to work. The week was hard to adjust waking up at 530 instead of 8 and living on 7.5 hours of sleep instead of 9. I was ready to put my head on my desk and take a 10 min nap more than once! I am taking Temador for chemo again. I took it in 2000 and 2003. I will be taking it in combination with Avastin. I was supposed to get my first infusion of Avastin on the 12th but the nurses and docs were leery of giving it to me so close to my nose surgery so we are waiting on that until January 2. I am having a little nausea with the Temador and defiantly some fatigue but as I said before I have had a big adjustment to my schedule. I didn't get too much time to adjust because I still had 5 days of vacation time left to use up before the end of the year. So I worked 7 (!!!) days and now I have 19 days off. How nice is that? My company shuts down between Christmas and New Year - that's why I get so much time off.

Today we got 10 inches of snow and Todd and I got out the old snowmobile and went wild! It was great! We had a blast. I can't wait to see how sore my arms will be tomorrow because it was so hard to steer in all this snow. I was a little hesitant about going but you know... you only live once, right? AND the helmet will protect my head and my nose. So I went for it. I even did a jump. Just like old days when me and my sister would take it out and ride behind the school about 20 years ago. I can't believe that thing still runs. I'm glad I went - no one tell my docs, OK?

Call it karma- about 10 minutes after we got home I had a seizure.

Stop already.

It doesn’t ever seem to stop. I have quit wondering why. When we started the conversations about my latest surgery the docs wanted to get rid of the tumor to be alleviate me of the seizures. Great! I thought as I placed my hands in theirs while I cried and they said this was the best option. I had my surgery and was seizure free for about 14 days and then I had one. Ok I thought. One well, with no schedule I seem to be having them more frequently. I had one yesterday night at about 7 pm and then today at 130 pm. I’ve been really tired this week from starting back to work. Could that be it? But what explains the ones while I was off and getting 9 hours of sleep and napping? How frustrating.

Breathe

As in I can Breathe now! I decided to have my nose fixed while I was off. The surgery was to straighten my deviated septum. The surgery was fine but the week after was torture. I had splints up my nose on both sides that looked like straws for a week. The nurse told me those were better because you can breathe through them. Humph! Don't think so. Maybe 20%. I still have about a week of healing and then will decided if the surgery was worth it. As for now... jury is still out.

Here is a picture of before:



The after will be soon.

I don't wanna!

I kinda just don't want to this year. Can we skip Christmas? I mean, skip all the things Christmas has become that has nothing to do with the holiday. Scrooge? ME?!?! I was going to sit down today and start addressing my what seems like an endless amount of holiday cards while I had a few moments but when I looked in the card drawer there is none. I usually buy the cards the year before so I don't have to think about it. And then the holiday letter. I love getting cards but I love getting updates on what happened to my (diatant) friends and family more. So I like to write one myself to all of them. Ohh... should I even bother?

It's over

Am I really ready to go back? Back to work. Back to normal? Start again? I can say that I am ready to move on - that's for sure. It's been a long time since October 14th. I've had a good recovery time. I saw a ton of people and most importantly, I got to see my husband every day. LOVED that. I actually talked him into making a snowman last Sunday when we in the middle of racking up a few more inches of snow. Aren't we cute? Too bad Mr. Frosty suffered the next day by some hoodlums knocking him over. Not to worry - I followed them and yelled at them. They'll be in jail before they are 18. Jerks! Todd rescued Mr. F and righted him. It was on our list to rebuild him a head. Well, he was dumped on his side again. Those little jerks were at it again. That time I didn't see them so one for them. Frosty (the torso) is now in the side yard safe and still waiting a head. Soon, Frosty, soon..



Anyway - I hope everyone had a good Thanksgiving and got to spend it with loved ones. I know I did.

I have to go and pack my lunch and make sure I have my computer bag ready for work tomorrow. I'm going to bed early but I don't know if that will help. Layoffs start this week at the office. Tomorrow will not be a fun homecoming.

% division

I went through all of my 5 pathology reports with one of my nurses the other day. I learned a ton of medical terms and most likely have now forgotten most of them. The thing I did learn is that my tumor cells are becoming more aggressive. It's not a shock. The time between surgeries has gotten shorter so put it together - the cells divide faster and hence the tumor grows faster. I started (back in 2000) with a division of 8-9%. Not too bad. Now in 2008 the division is 35%. I'm waiting to hear back from my oncologist on the prescription for Temodar and how to take it. I hope to start that soon. Why put it off any longer I guess. I need to step up and become a fighter again. Not a floater. It's been great - the time off but now I need to get back to it. I plan to get back to work on December 8. The week my company will start laying off my friends that I have known for the past 8 years. They have been through it all with me. All 5 surgeries.

Week 3

Wow! I can't even believe it's been 3 weeks since surgery already.

I met with the oncologist last Friday about future treatment(s). He rattled off so many options that Todd and I left feeling very confused. I know the tumor board recommendation is for me to do a chemo drug that is in pill form. I was on Temador in 2000 and again in 2003. I took the chemo 5 days out of every month. I had nausea and fatigue as the sessions accumulated. The major issue with the drug is how expensive it is. Because it is administered in pill form, obtaining it is like getting any prescription filled at Kmart or Walgreens. You pay your co-pay. Ours is a percentage and the drug is so expensive that the percentage left for us to pay previously was over $700 per month. Todd and I need to figure out how expensive this will cost us and how we are going to pay for this. Stressful.

Also, I went to see the surgeon today because my sutures were oozing... puss. Pleasant, eh? He was not concerned about the look of my incision and put some Bactine on my head and sent me home. A few of the sutures were so sensitive and hurt all the time so he took those out for me. He was tempted to take them all out but is hesitant because of the the trauma my scalp has been through. He was afraid that my incision could start to open. I'm good with having them in for a while longer. I get those out the day before Thanksgiving.

I am going to go back to work after Thanksgiving. That's the plan anyway.

The Princess treatment

I got a sign and a tiara!!! I showed everyone my sign who came in my room. Heh heh. Thanks again Chrystal and Shannon!! You are the best!

Back at home

The surgery went well. Doc said he got everything and now we are waiting to hear about the the pathlogy report. I hope it will be done Monday. I hope they won't make me wait until Wednesday whn tumor board discusses my case. That's a long time from now.

After surgery in recovery I was having a hard time getting my pain under control. The docs and nursers were trying everything to make me comfortable. I was finally put on phetnol. It helped for about 20 minutes and then wore off. My pain was still up at 9 or a 10. I have never been in that much pain from my surgeries. It scared me and I was laying there helpless. Once I was transfered to ICU the nice ladies there gave me a morphine pump that I could work myself every 10 minutes. That wasn't often enough so they lowered it to 7 minutes. Bless them! I was also put on Oxycodone. The pain was in check.

Shannon and Chrystal showed up with my Princess treatment sign and a tierra! They are great. The yummy torte and chocolate chip cookies weren't bad either. I'll blame the extra pounds on the steroids for sure. The night in ICU was uneventful thank goodness. I didn't even freak out that bad during my MRI. I usually need to be sedated for them after my surgeries. I think I feel like my head won't fit into the machine. I ended up staying in the hospital one more day than I usually do. The doc wanted me to be on antibiotics for another day - just in case. They are every worried about infection because this is my 5th time being opened up and I may not heal as quickly. He also wants my stitches to stay in for 6 weeks. I was planning to go back to work in 4. Not sure how that will work. I may just take the 2 extra weeks off. It mostly depends on what the pathology comes back and what the docs decide on for future treatment. I guess it will round the season off nicely. I can go back right after Thanksgiving.

We had visitors all weekend. My niece and nephew were getting worried about me so my sister in law brought them over to see me on Friday night a few hours after I got home. Maybe not the smartest thing but it was good to see them and I went to bed right after they left. My mom came over Saturday and cooked us all kinds of food. She even brought over more on Sunday. YUM! My dad came for dinner Sunday. Lot's of visits. Lot's of flowers, too. Love those!

I feel the love

In the past few days I have been treated to a pizza lunch, surprised by a goodie basket and was given a 1.5 hour massage gift certificate. I was so shocked every time! It really makes me feel good that all of these people think this way about me. I have so many friends that somehow it makes all this stuff I am going through easier. If I didn't have my coworkers to see every day I would not have been able to hang in there the last week. I will miss them all this next month. Then there is my friends. I can count on them to keep me company in my last hour. We are all dining together Monday night. Love you guys.