Thursday, June 16, 2011

Anxiety leads to less sleep . . . but the day is ending on a good note

I started Tykerb today. I've had it before with hardly any side effects - a tad bit of diarrhea until my body gets used to it. Some white zits on the face, but otherwise, I tolerate it well. But I wasn't sure how it was going to interact with the anti-seizure medicine (which also, coincidentally, has diarrhea as a side effect).

Before bed and throughout the night, I was anxious about taking it. I want to take it so I can start taking care of any cancer cells in my noggin - and in my skin - but anxious about potential drug interactions.

I was also anxious about my decision to do the surgery next week, not sure that I was really making the right decision.

As a consequence, I only got about 4-5 hours sleep. I was tired all morning. I took Ed to school anyway and then got the oil changed in my car. But I did have some diarrhea and felt a little shaky as a result.

Then on my way home, I got a call from Eddie at school - he apparently needed something I thought was already graded and I put it away, so I had to run it to his school.

Then I saw the radiation oncologist. I was so tired and anxious that I admit to being weepy with both the radiation nurse and the radiation oncologist. The nurse said that my weepiness was to be expected and that my anxiety was warranted. But she also added that I did look really well, under the circumstances. My heart rate was still high as was my blood pressure - either still getting the steroids out of my system and/or withdrawing from them. She was very reassuring.

The radiation oncologist came in - and either she or the nurse (I can't remember now) - and they said that at their morning staff meeting, my name was mentioned and I guess it was generally agreed that I had made the right decision to do surgery next week. She understood the reasons - especially that the damn tumor was so visible to my own eyes and she said she might make the same decision to do the surgery so she wouldn't have to look at it anymore. She also said that I was "strong-minded" and that was what a lot of people admired about me and how I take charge of my own care.

I told her about the research I found about brain mets - that people who stay on Herceptin actually survive fairly long after a diagnosis of brain mets as long as the cancer is controlled below the neck.

She was also happy that I chose to take Tykerb for its preventive effect on the brain. I will be able to stay on Tykerb through the surgery. She was going to check and make sure that I could stay on it through radiation.

After some discussion, we decided on 14 more treatments of radiation as she can deliver a smaller dose. If I were to only do 9 or 10 sessions, they'd have to do a larger dose, but research has shown that there can be some cognitive defects in the long -term (years later) and since the research shows that it is possible that I will be alive a longer time than Dr. K said I might, she wanted to opt for the smaller dose. She also assured me that everyone admired how I continued to live my life - doing fun things and working and all - with everything I've been through.

I won't be prescribed steroids unless I start getting nausea or other symptoms that indicate that there is increased swelling. YAY!

We decided that we'd start the Monday after the surgery - beginning June 27 - and doing 14 treatments. Just in time for us to go to the coast the next week, where I can recuperate.

So, I get another week to recuperate from everything that has happened thus far and adjust to taking Tykerb (I see more yogurt in my future), then surgery, and four days later, I start radiation. Three weeks of that and then a week at the coast.

I received hugs from the nurse - I think the doctor, too - and one of the radiation techs. The doctor's son is the same age as my son and we talked about how both boys have recently discovered laser tag. I told everyone we were taking my son to Chuck E. Cheese to celebrate his last day of school. Eddie and I have gone there the last 2 or 3 years and now, as Eddie says, it's "tradition", so he really wanted to go.

But since I don't quite trust myself to drive long distances on my own, I invited mom and dad to go with me. They went to the mall and shopped a bit, while I read a book ("Water for Elephants" that I borrowed from my colleague, B.), and Eddie used all his tokens. A huge thank you to dad for driving. I think it was nice for all of us to have a change in scenery.

On the way home, Dr. K's office called, but didn't leave a message. So, I called back. The nurse called me back later and we finally figured out that they wanted to tell me the results of the echocardiogram from the other day. I was nervous that there was something wrong and I'd have to go off Herceptin or something.

The news? Everything is within normal limits. My heart is fine - my ejection fraction was within normal limits. The high heart rate and blood pressure is probably more due to the steroids than anything else.

Whew. Thank goodness SOMETHING is normal. Given everything else that's happened, normal is good. It's very very good.

I should have a good night's sleep tonight as all that I worried about last night is okay. Only some diarrhea (which I will get under control), my decision to have surgery was sound, and my heart is fine. And, Eddie and I got to carry on "tradition" with my parents' help.

Thank you, everyone, for continuing to keep me in your thoughts, prayers, etc. I very much appreciate it. I am good.


Joanna said...

Hi Dee,

Even your medical staff sees how amazing you are and they see a lot of cancer patients. Your spirit is shining through.

I have taken Tykerb (750 mg.) for a total of 16 months, not continuously however. I did want to mention that the Tykerb made my chest wound difficult to heal and I had to go off of it until I eventually got it closed up. I know you are a Tykerb veteran but I do have a couple of suggestions: Get upright after taking the Tykerb and take it with lots of water. I developed a problem with my esophagus possibly as a result of continuing to lie down after taking the drug. Tykerb, as you probably know makes it more difficult to go to sleep. My doctor prescribed the generic form of "Sonata"(Zaleplon). It is a mild hypnotic rather than an all out sleeping pill. It is much less habit forming than Ambien and you wake up in the morning feeling refreshed rather than under the influence of medicine. I don't know if this is compatible with your anti-seizure medicine...

At any rate, here's to Tykerb and I hope it worms it way through your brain as efficiently as possible.

MisAnthropology said...

I think your blog needs to be required reading for all oncology staff.