Tuesday, October 21, 2008

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:

mea in bed 1

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.

Wednesday, October 15, 2008

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.

Tuesday, October 7, 2008

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.

Monday, September 29, 2008

Week 15

Last week was quite difficult, dealing with the effects of anemia. It's been very difficult to change how I do things in order to accomodate a lowered amount of oxygen in my body. I kept having to tell myself, "slow down, walk slower" which was a huge pain! At the parking garage where I park to catch the bus, I had to take the elevator DOWN. All these little things that you don't think about until you are forced to.

My labs on Friday still show my red blood cell levels dropping, with a hct of 27 and hgb of 9.2. If my hct gets to 25 we start talking blood transfusion. I'm confident, though, that my levels will be up this week. Today is the 10th day since I got the shot of darbo to increase my red blood cell production. Since red blood cells take 10 days to die and regenerate, I should start feeling better this week. I really hit a low point on Saturday though. I was very short of breath and quite dizzy when standing. It was hard to catch my breath even when sitting or lying down. By Sunday I was feeling better and today is even better than yesterday. This morning I had to get off the bus a block early due to a car accident and I managed to walk at a fairly normal pace to the cash machine and the coffee shop before going into my building, probably about 3 1/2 blocks all together, without getting too winded.

On Saturday I was supposed to go to Kitchen 2 Kitchen to make meals with my friend, but there was no way I could make it. She managed to do all of my meals as well as hers with the help of another friend and the owner, for which I am extremely grateful. I've been eating frozen dinners because I don't have the energy to cook, so this will be much healthier and better tasting! After the meals were dropped off, my step-mom came over and vacuumed for me and my sister did poop patrol in my yard. My brother-in-law even brought me some chicken pad thai for dinner. Despite the bad day I was having, it was wonderful to have a lot of help.

On Sunday my step-mom and dad came over and did some more cleaning and poop patrol (they brought their dog) and generally just hung out. It was nice to have them over and just have some company for awhile.

Today I'm back at work and feeling much better. I was going to talk to my boss about working 3 days this week and doing some work from home, but now I'm not sure I will need to. I think I'll bring it up as an "as-needed" thing, just in case my bubble bursts tomorrow.

When I walked past this car accident this morning, there was a mini-van on it's side. I have to wonder, how does this happen on a city street? I can understand it on the freeway or a rural road, but on a city street? I don't get it. Maybe it was t-boned, but it wasn't in the middle of the intersection. Weird.

Wednesday, September 24, 2008

Week 14

This is my 2nd dose of Abraxane. My labs show that I am anemic.. my hematocrit is 29 and hemoglobin is 9.7, so I got a shot of darbypoetin to boost red blood cell production. It takes awhile though... a couple weeks. In the meantime, I have all the wonderful symptoms of anemia: shortness of breath, rapid heart rate, dizziness and of course, fatigue. My iron levels are fine though, and as of now I don't need anymore iron sucrose.

I've also noticed that with the Abraxane, I don't have a huge appetite. Normally this wouldn't bother me, but with the anemia it's important that I eat, so I end up forcing myself to eat sometimes, which is no fun!

I took a couple pictures on Friday, one of my IV bag and one of me getting the juice:

IV 9-19-08

chemo 9-19-08

Monday, September 15, 2008

Back to work and a night in hell

So far I have completed one dose of the Abraxane. I was doing very well until last night when I started getting severe muscle pains in my feet and legs. Add that to the 3-hour hot flash I went through and kitty antics that involved puking 3 times and knocking over a vase, well I just didn't get much sleep last night. Oh, and today is my first day back at work!

Yeah. It's going great.

Since I wasn't sure about the pain, I ended up taking a pain pill, a muscle relaxer and some Aleve, just to cover all of my bases. I had an email conversation with my oncology nurse this morning who explained that muscle and joint pain is a side-effect of Abraxane and to take 2 Aleve twice a day. She also said that the pain should diminish over time as I get more of the Abraxane. That doesn't quite make sense to me, but I sure hope she's right! This weird stabbing pain in various places of my body all day long is driving me a little bit crazy. The Aleve isn't taking the pain away completely, but it is damping it down a bit.

Other than that, I'm doing pretty good. I'm so glad to be done with the Adriamycin! Now that I've gone more than a week without it, I have noticed some of the side-effects are fading away. My biggest issue today is trying to stay awake after my crazy night.

Saturday, September 6, 2008

I'm half-way there!

I finished up my last dose of AC on Friday. YAY! I felt so good and energized yesterday after my appointment. My best friend and I even went out to dinner to celebrate.

This morning when I got my pills out, I almost cried. No more chemo pills! WOW.. it's hard to put into words what that feels like. Every morning I stared down at those 3 blue pills, not wanting to put them in my mouth and swallow them. Today, there are no blue pills! My energy level just spiked at that :)

no more chemo 9-6-08

Next Friday I start Abraxane, which is much easier on the body than the AC. I also go back to work a week from Monday. In order to get ready, I'm going to spend next week pretending I'm going to work. My plan is to shower every night and get up at my normal work time and get "ready" every morning. I also plan to leave the house every day and not take any naps. My sister and I are going to start walking every day too. Hopefully, by the time the 15th rolls and I put in a full work week, I won't be too drained and exhausted.