Week 19

Baby Ben came over today with his mom and grandma to do some housework for me. Dishes, vacuuming, laundry and dusting got done today. I really need to think of something nice for my sister when this is all over because she is just awesome.

This has been another really hard week with side-effects. My hands and feet are becoming neuropathic and it's difficult to write and do anything that requires fine motor skills. My eyes are watering constantly and the skin under my right eye is getting irritated. The big issue though is this weakness I've been experiencing since about mid-week. My shortness of breath is better only because I am now forced to move extremely slow. My knees feel like they are going to give out on me and my thighs and arms just feel like jello.

I'm not sure what I am going to do about work. I mean, I can work, but getting there is an issue. Unfortunately it's not work I can do at home. I just need to decide if I'm going to take the bus or drive. Tomorrow I'm going to ask my doctor about getting a temporary handicapped parking placard. I probably should have done this a few weeks ago, since the state is slow about these things, but I wasn't expecting this weakness and I figured the anemia was going to get better after the transfusion. Speaking of which, my hematocrit dropped another point this week to 29.

On Friday while I was in infusion, the oncology PA came down to look at my nails. She was going to cut back my right thumb nail, but instead of lifting it off the nail bed, she just tried to jump right in, which of course hurt. Later, at work, I managed to get most of the nail off with my little clippers. There was a little bit of pus in the nail bed, so I've been putting silver gel on it with a bandaid and it's healing nicely. Both the PA and my infusion nurse suggested I get some extra sleep this weekend, so I did take some ambien Friday night and slept almost 12 hours and after I was up for a couple hours, took another 4 hour nap. It was a bit harder to get to sleep last night, but I did manage about 9 1/2 hours. I'm pretty wiped out for the little bit of housework I've done today and will most likely nap after (or during) the Seahawks game. Go Seahawks!! (please win!)

Here's another picture of Ben.. He's just so freakin' cute and he's seriously stylin' today!

Kindness

I found out today that several people in the department I'm working in have inquired about donating shared leave to me. This is such a nice gesture and completely unexpected. I can't seem to build up any leave at the moment...I'm always using it up and at times have to take leave without pay.

Week 18

My hematocrit keeps climbing, but I've yet to feel the effects. I'm still huffing and puffing my way through the day. My supervisor at the medical center found me some office space to work from when I need to, so I can just take the bus directly there and I don't have to worry about the shuttle. What I didn't take into account is that the street level is below the hospital entrance, so I have to do a bit of climbing. Yesterday I went up the stairs kind of fast because it was raining. When I got to the top, I had to sit down for about 5 minutes to get my breath back. By the time I got to the office area, I would get out of breath just walking across the office. I ended up going home at 12:30 and spending the rest of the day napping an in bed with my new humidifier on.

It probably didn't help that on Saturday, I attempted shopping. It did not go well. By the time I was at the checkout, it was hard to stand up. Thankfully my sister was with me and she carried all my groceries and even put the cold stuff in the fridge.

On Sunday I managed to accomplish something that has needed to be done for awhile, but I probably should not have done it alone.. that was to turn my mattress and change the sheets on the bed. I also had to "de-hair" my comforter, for all the good it did me:



It's great to have clean sheets, but I really paid for it on Monday and even today a little bit.

Besides my almost constant out-of-breath state, there are other annoying things going on:

I'm definitely starting to feel the numbness in my hands. It's very difficult for me to write. They hurt and feel tight and weird. I'm already on gabapentin for hot flashes and my guess is that after I talk to my doctor, I'll be seriously increasing the dosage.

It's very sad that when I blow my nose, I don't even notice anymore that it's all basically blood clots. My mucous membranes are so dry in my mouth and nose! My expensive ultrasonic humidifier with a silver strip to keep the bacteria at bay arrived on Friday and I think it's starting to help a little at night.. I'm not so stuffed up.

My fingernails. Probably the grossest thing so far... both my thumb nails are thoroughly discolored and now have fluid between the nail and the nailbed. They are smelly and gross. I have to soak them in this astringent mix a couple times a day. The nail on my right thumb is loose all the way to the quick (eewww) and on Friday, someone is going to cut it all the way back (yikes!). Today I cut it about halfway up, just to where the nailbed starts getting raw. I have to wear a band-aid all the time so it doesn't catch on anything. Plus, they hurt because the nails are flattening out. My other fingernails are in various stages, but aren't even close to as bad as my thumb nails. My toenails are starting to hurt, and I'm sure I'll be going through this with my feet soon. Hooray.

I'm 3/4 of the way through. 6 more weeks. I can hardly stand it.

Oh, the Weakness

As part of my job, I have to go over to the UW Medical Center to audit research regulatory and subject binders. Although there is a very good system for getting there (a free shuttle 3 blocks away), I have been dreading the trip for the past couple weeks because the anemia makes it hard to walk very far. In addition to getting to the shuttle, it's a bit of a walk to the department I have to go to. Yesterday, I made the trip for the first time since I've been back to work. I was doing pretty good after I got to the department.. the research coordinator had all of the binders spread out in the conference room, so I didn't have to do too much lifting and carrying. However, after a couple hours, we had to vacate the conference room and I moved to a desk. This meant that every time I needed a different binder I had to go get it and lug it back. These are not small binders... many of them are 6" wide. After I was done, I had to walk back to the shuttle and by the time I got off the bus, the 2 blocks that were on a slight incline seemed like a steep hill. It was a long, slow, painful process and I still haven't fully recovered. My sister, bless her, got me dinner last night. I wasn't sure what the morning would bring, and although I was tired, I felt ok. I was supposed to go back to the medical center today, but my legs feel so weak when I get up to walk, that I've decided to wait until tomorrow. I have to be over there tomorrow anyway for my genetic counseling appointment.

In other news, my thumbnails are starting to get fluid under them and they are loosening up. I've also got some mild neuropathy in my hands. Hooray for the weird chemo side-effects.

Week 16

Well this has not been the best time. I had a horrible weekend, unable to get up off the couch or out of bed without being seriously short of breath. My hct on Friday was 26. They ran some tests to make sure I don't have any clots, which I don't, so all my symptoms are from the anemia. My doctor called me at 4:30 on Friday to say I could get a blood transfusion if I wanted to.

I went in yesterday for the transfusion. 2 units took 4 1/2 hours to infuse, so it was a long day. Today I feel about 50% better than yesterday. My doctor says the anemia is a side-effect from the AC and it's just going to take time for my red blood cells to re-build themselves. The Abraxane (that I'm on now) isn't shown to cause anemia the way the Adriamycin does. Hopefully this transfusion will give my cells a little jump start to get busy!

I was going to go into work today, but I'm pretty dizzy and shaky... my body is getting used to all that extra fluid. Hopefully I'll be able to get back to work tomorrow. In the meantime I'm drinking electrolyte water and eating protein and hoping this shakiness goes away.