Ibrance update

The first three days of Ibrance were full of mild nausea, moderate fatigue, and general ill-feeling. Thankfully by the Monday I felt like myself again. The fatigue has continued, but who doesn't appreciate an afternoon nap? The first two weeks were basically fine.

Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.

I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.

So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!

Port Removal Update (Save Your Family)

Last Friday they removed the current (my second!) port-a-cath. The fistula just below it showed signs of a staph infection, so now hopefully the red line on my neck will heal along with any other issues.

Conscious sedation (i.e. Versed and Fentanyl) gives one an odd feeling. I undressed, put on a hospital gown and an extra pair of socks, and a nurse started an IV line in my right arm. They rolled me from the prep area into the interventional radiology surgery area, which featured lots of high tech x-ray etc. equipment and an enormous computer screen for the doc to track his work.

I scooted from the gurney onto the "table" and tilted my head to the left, away from the port site, while Nurse Romeo set up a blue fabric screen with a big hole out the left side, to prevent claustrophobia on my part.

The nurse gave me Fentanyl first (for pain relief) and I almost immediately went into la-la land. Then she gave me the Versed and I was no longer aware of anything.

Versed is funny: you probably can answer questions the staff put to you, but you don't remember what's happening from moment to moment. Rik will have to say if I repeated myself over and over again afterwards, which is the typical side effect.

We went to lunch at Mediterranean Kitchen (oh those farmer's wings!) and then walked back to Swedish for my monthly shot of Faslodex and my every two months' dose of bone-strengthening Aredia.

It ended up a very long day. Rik had to go home to feed the dogs, then came back for me at 5 PM. In the meantime, Dr G walked over to say hi and check in with me before he left for the day.

After we came home, I crashed on the bed for a couple of hours, woke up at 8 PM, had a snack, and took the first dose of Ibrance round 2. I spent the weekend recovering, relaxing in the sunny weather and am ready for today's scans.

Why am I so tired?

I am tired. A lot. I need naps. I am sure a doctor will tell me its due to fibromyalgia or rheumatoid arthritis. All I know is I need a nap. I slept almost 12 hours last night and feel that I need a nap later today.

Yes I will talk to my new primary care on Monday but I still will take naps. Its not just that I need naps, I don't have the energy to do a lot of things I want to do, such as see friends.

But I digress. Its been a busy day so far and its not even noon! I'll have to fit in a nap later.

Why do people read my drivel like this? Its awful.

Coming up for air

This past week I've moved from the sofa to the bed with that same low fever and lack of energy. Even taking the dextroamphetamine three days in a row didn't help much. I'd take it at noon, feel better an hour later, try to run my errand, appointment etc., and still find it tough to put one foot in front of the other. I even gave my car a fender-bender in that terrible  Trader Joe's garage on Capital Hill. Then the uppers would kick in and I'd be awake until 2 AM.

Friday afternoon I wondered if I needed a blood transfusion, so we ran to see The Amazing & Wonderful Nurse Jacque for a blood draw. No transfusion needed, just feeling icky, but thanks to our friend T and the interconnectedness of Facebook, we ate a delicious salmon dinner last night. I even had a glass of rose!

Today I actually woke up feeing well-ish. Due to the uppers, I hadn't fallen asleep until two o'clock in the morning, so I stayed in bed until 11 AM, ate something and took my morning meds, sat outside in my pajamas and a blanket in the sun for an hour, then went back to bed until 3 PM. I wish I'd taken a selfie to post. Imagine me wrapped to my chin in a maroon blanket that's covered with dog hair.

D stopped by unexpectedly to visit and we chatted over tea for an hour. That's given me some extra oomph to make pizza for dinner before the TJ pizza dough died. Rik and I will enjoy pizza with mushrooms for dinner, another glass of rose, and have better expectations for Sunday.

Costco anyone?

My life

Apparently I need more sleep than I thought. This may be why I had a bad week last week.  I was cranky. I was tired. My RA was bothering me. Work was stressful. And made me cranky. I don't think I got through a full work out at the gym all week.

I was very tired by Friday night. Then Saturday I did a lot of nothing (well I went to a few garage sales) and then took a 3.5 hour nap. Then I went to bed at 10 and slept for 8 hours. I could take another nap today. I probably will.

I will work harder at keeping up on sleep this week. I might even fit in taking a few naps.

This is my life. I have to fit in naps. I have to take it easy. Regularly. I have to have naps. I have to sit around with my feet up.

I have a bad case of 'Icouldntcareless'

I have a new ailment and it is  a close relative to 'Apathy' and 'Screwitall', and its called 'Icoudntcareless'. Its symptoms border on fatigue and ennui and require lots of time with your feet up to recover from recent stresses.

Sometimes you get too much thrown at you to deal with and the best treatment is to ignore it all. That' s what I'm doing. The other day I blogged about blocking out life. I am continuing in that mode and taking things a step further.

My schedule for the next few days has lots of things on it but I am not going to do anything I don't have to. I finally caught up on some much needed sleep, I think. But I might need to get another 10 hours tonight (seriously). The knee doctor gave me a fancy new brace and wants me to try PT and then come back in 6-8 weeks. The good thing is I can do PT at my gym instead of going to a separate place with lots more appointments.

The fibromyalgia support group was okay, not great. It has potential but there is one woman in it who wants to be the center of attention and dominates all conversations. The other woman who attended did not speak unless directly addressed. A nice combination. I will try it a few more times and then decide but am leaning against it. I need to get over my current 'Icouldntcareless' before making any decisions.

Maybe I am turning into a cynic or something.

Fighting fatigue

These days I go through life fighting fatigue. I never seem to get caught up on my sleep. I prefer not to nap too often so that I can sleep all night. And I have prescription sleep aids to help me sleep through the night - which makes a huge difference.

Every day it seems I get to a point where my body is saying 'sleep' and my mind is saying "don't, you are driving a car" or "You are at work"... You see the problem.

Last night we went out to dinner and then I needed to sleep. Earlier in the day, I fought off fatigue while driving (and didn't fall asleep). A cup of coffee doesn't always help me with the fatigue and I really do not want to drink coffee all day because then I will never sleep at night. But if I am at work, I have resorted to coffee.

Right now I am doing okay. I got about 11.5 hours of sleep and am drinking coffee. But I may nap later.