Life Clock

I hear about women having a biological clock that they hear ticking when they think they want to have a baby. I have never experienced this, but I definitely have a "Life Clock" ticking in my head. Every morning I wake up and the first thought in my head is "wonder if the cancer is back". I thought this would eventually go away, but so far it hasn't. Every day I hear the ticking and it pushes me to do more, see more, experience more, because what if it does come back? What if it comes back soon? What if this time I don't survive it? Not a day has gone past since the day I was diagnosed when I have not thought of this. I can no longer just sit. Relaxing scares me. Doing nothing for a long period of time actually makes me very stressed and I am overcome with guilt of things I could have been doing or seeing. I have this constant need to do....to try something new, to call the people I haven't called, visit with everyone I haven't seen, and occasionally do something that scares me, because honestly, all of it makes me feel very alive.
Cancer has taught me not to take things for granted, the most important of those things being time. Yet it has also left me terrified of this clock that constantly ticks in my head......

nerves?

I think I have nausea from the pills. It's hard to tell, I've had nausea for over a week, but I've also been under more stress at work then normal. So I assumed it was the stress and what I was eating. So I tried a more "bland" diet and it's not better. So now I'm thinking that I might actually have some nausea from the pills! Very exciting! (Because this would mean I am on the real meds). Chemo nausea is not like normal nausea, chemo nausea is more like a feeling of being really really full, all the time, even when you know you aren't because your stomach is growling. Will try the bland diet for a few more days and see if anything changes, if not I think I might have to log this as my first side effect!!

What's the right thing to say?

So I went to LA for work this week. I've worked at the same place for 11 years and with most of the same people for those years. I was open about my cancer, and although I was not in LA during my treatments most of my co-workers knew what was going on with me. This week was the first time I have seen anyone in LA since my diagnosis. Pre-cancer I had long blond hair. My hair fell out. It's growing back now, but it's still short. Anyway, when I would see people in the hall nearly everyone said "Jenny! You cut your hair!" which threw me off a bit. I didn't cut my hair. It fell out. It. Fell. Out. Every single piece of it. Over my entire body. So the question is what is the proper response? Do you remind them? One person went into great detail asking me why I would have wanted to cut my hair so short, and I did say "well, you know I have cancer, the chemo made it fall out.......so this is it growing back......not really a decision to cut my hair?" But then I felt bad for saying it so bluntly. What's the proper response?

The questions I asked...and the answers....

Ok today is day 4 and so far there are no side effects. I feel fine. I realized I never explained my questions from Thursday and Kristen’s answers, so here goes.
1. If this drug ends up being approved and released and I was on the placebo, can I then take the real drug? Answer: Yes I can. I can also do other drug studies in the future.
2. If I don’t get the stomach upset does that mean I am on the placebo? Answer: No, not at all. Kristen receives status on patients from the drug company, and she said those people that do have the most stomach upset are also taking chemo drugs at this time. Apparently there is not a large group of people yet not on chemo like me that are testing the drug. So I should not be disappointed I am not shoveling down the Imodium today. :0)
3. Should I expect to get a full physical exam every time I come into the office, to include a vaginal exam? Answer: Yes. And blood work each time.
4. Do I really need to call at 2am if I have diarrhea before I take an Imodium? (This is in the instruction booklet.) Answer: Yes. The doctor on call needs to know if this side effect appears, and monitor it closely. Call anytime day or night if needed.
5. Besides the list of drugs I was given in the packet that I could not take can I take whatever else I need to without contacting them first? Meaning, can I pop an Advil if my back hurts? Can I take some Airbourne if I’m going to fly? Answer: Yes. As long as it’s logged in the log book, and it’s not on the list I can take it.
I’ve mentioned above the log book and the packet. Both go hand in hand, the packet contains the agreement I signed, as well as instructions, what medicines I cannot take, several logs, and numbers to call if needed. Each day I am to log my dose, any other medicines I took, and any side effects I am having. Also each time I go into the office I use a pilot (cell phone) to fill out a 25-30 question survey asking a ton of questions about how I am feeling both physically and emotionally. I was given my pills by Kristen, and I am to return the bottle to her and get another one each visit. Everything I do, whether on the computer, pill bottle, or logs is all tracked by number only. To the drug company I am a number not a name. The study seems very well run, and extremely organized. My information is all kept private, and even the survey I take is password protected (with a password selected by me).
Guess that’s all of the nuts and bolts. Wanted to make sure I included that info for anyone thinking about doing the trial…..

You don't get to pick....

So Monday when I went for my EKG the tech asked me why I was there, when I told her she looked shocked and said "You are way too young to have cancer!". Although so many people have said this to me, I still don't know the correct response to it.... "thank you"..."you're right!"..? So I just smiled at her, and she then told me about a woman she had seen that morning that was 40 and had a stroke. Then she looked at me and said "you just don't know what life is going to throw at you do you? It's so scary!". LOL. This might have to be my new motto. I ate good my whole life, I drank very little, I never smoked, I exercise every single day, and yet I still got cancer. A cancer that no one in my entire family has ever had. I followed all the rules, I did all the tips for not getting it. But, you don't get to pick. You don't have control. This is maybe one of the hardest things I've had to learn from cancer. Most days you just have to do what you can with what you are given, and never take any of it for granted, cause tomorrow it could also be gone. So here is my new motto, don't plan for tomorrow, live today.

Drug Trail - Day ONE!

So today is day one for the trial of Neratinib. There was another full physical, more blood taken, and this time a questionnaire. Lots and lots of questions about everything from how I was feeling to if I felt I had good friends. (I rated my friends the most exceptional and most supportive!) I asked the nurse and doctor a ton of questions I had come up with at 2am when I was nervous about today and could not sleep. But the bottom line is, I have taken dose one. And so far I feel fine. I am nervous that I will have nausea for a solid year, and at the same time nervous that I won't because I am on the placebo and not getting any life saving drug in me at all. But that is the chance I have to take, that is the only option I have at this time. So now I must go update my logs, and schedule my next mammo and EKG.
BTW the dose is 6 pills, each day, for one solid year. The pills are small, they look kinda like advil. They have to be taken with food, but otherwise not many restrictions.

One more test....

Today was the EKG, another easy test! Took about 10 minutes, and was pain free! They pretty much just hook you up to a bunch of heart monitors and let the tape run for about one minute and then you are done. The tech told me my heart looked good, so hopefully with this one done I am now cleared to start the trial drug on Thursday!