rounding the corner

Man, don’t know how to even start. It has been one crazy week. That little shot sure packed a big punch. Docs said that other patients didn’t have the many side effects like I had – what little consolation that was – one had nothing at all. But oh, not me. I got it all. Fevers, chills, body aches and to add to the list that they hadn’t seen yet for this drug, mouth sores. Not going into too much detail, the doctor said this weekend was the first time he was worried about a patient. I have to admit I was pretty scared too. I don’t like the side effects I have had before with chemo but at least I didn’t have the high fever – that was so not cool.

Good news is that I am starting to round the corner now. I go back in tomorrow for more tests, then the next few Tuesdays for more tests. They are being great about monitoring me and watching me to make sure I get back to more normal levels. Of course because I had such a negative reaction to the drug I can’t do it again which really is okay with me. I was going to tell them the same thing.

So what is next? The doctors at NIH that were part of this trial are working with me to find another one. I am hoping we do. We are going to discuss again on Tuesday. During the test they will also continue to monitor my CA 125. If it gets to the point where it is out of control then we will stop looking for a trial and just move to chemo since we know that I respond well to that.

Right now I am just focusing on getting better as quickly as I can. Rudy, Chatham, and the boys have been great help this week since I couldn’t really leave my bed. They have also made sure someone is with me at all times which was comforting. I also had all of you, all of your good thoughts, prayers, positive messages. I could feel you were really rooting for me. Gunalcheesh (thank you)

Home again

I am home now. As planned I got some side effects that made it difficult for me to do updates. Side effects are manageable – body aches and fever mainly. Still have both but didn’t need to sit in the hospital for them which is good so after my last needed blood draw I got released.  I am glad to be in my own space again and hopefully will get some more rest. Always hard to do that in the hospital with someone coming in every few min.

I have to go back tomorrow and Saturday for some more tests but as an outpatient. Hoping it doesn’t take too much time because the boys have a busy weekend. Both have 2 games and Christian has a report he needs to complete. I am hoping I feel well enough to attend at least some of it with them.

After that I go back once a week for tests and then in a month we start over again. Now that we know what to expect that should at least make it less intimidating.

Thank you all for your love and support. I still feel good about this trial and hope the side effects are an indication that the drug is doing its job.

Much love!

Rudy fixed my hair today

I can’t bend my right arm because they put a tube in it with my IV for better blood draw. Fancy huh.

I have had the medicine, bunch of blood draws, and finished the every 15 min tests for 2 hours. Now moving on to the tests and blood draw every 2 hours – we are getting there.

Packing list said slippers

It has been a full day and now getting ready for bed.

A few highlights from today.

They have a library here – the staff in the library are great and even gave me a last of dvds on file and will deliver to my room once I am not allowed to leave (starting tomorrow). I did check out 2 movies and took them back to my room to find out I didn’t have a dvd player.  So got my laptop all ready to play but my headphones weren’t working. It worked out for the best though because my friend Sarah lives a couple blocks away and came to my rescue. So now I have headphones and movies.

I am in a double room and do have a roommate – another reason the headphones are needed.

Tomorrow I do some tests early in the morning then I go in for the big medicine. After that I have to stay in my unit for at least 48 hours. I have a series of tests they will be doing during that time.

Another highlight is they have a room service menu that is pretty good. I liked half of my food but that is much better then what I thought it would be like and the selection was way better then I thought.

I got to talk to my boys tonight. One of the best things right there.

Well my roommate is snoring so that may be time for me to sign off for the evening. Tomorrow is a new day. Xoxo

My college man

Rudy is working on his math – waiting with me for the doctor. 

New Adventure – Trials

I know it has been a while since I have been on here. I remember when I was first diagnosed someone that had been going through it made a comment on an Ovarian Cancer board saying “the reason you don’t see me on here is because I am too busy out living my life.” Well that is what I have been doing. It was a great year –  actually a year and almost 4 months since my last chemo. So tomorrow is a new chapter and I start something new. I am going to be a willing guinea pig at NIH and excited to do it. After trying to find a trial that worked for me and that would accept me one came open last week (that wasn’t supposed to be open for another 4 weeks). Last week I was starting to get nervous about the wait and see situation we were taking so I was really grateful to get the email to let me know one of the trials I was looking at had an opening. It happened to be on the same day that I was going to call my doctor and say okay lets start chemo. It was great news!

So, tomorrow morning I will be getting checked in over at NIH. I will be there for the week but only receive treatment on Tuesday. The other days I am staying there for tests (part of the research) and as a precaution for any side effects. We are hoping that the side effects will be less then the chemo and the research doctors have said that is what they have seen so far with the results of other patients. With the level of drug that I will be receiving the goal will be to stabilize the tumor, they haven’t really seen it decrease it yet but believe that it may reduce at a higher dosage. The higher dosage will come in the next phase (each phase can only increase the dosage by 30% I believe so they are building up to the larger dosage). Really I think this is going to be good. Stable is good.

Anyways, I should really get packing but just wanted to update on what was going on over here and ask humbly for your prayers and good thoughts as we start this next chapter in my treatment. xoxo Jamie