Week 22

Almost at the end! I can't believe it. The past 6 months have gone so fast, yet so incredibly slow at the same time.

The good news is that my hematocrit went up 4 points to 32% after taking last week off. I was able actually walk and breathe at the same time last week. It was amazing to feel good (at least in that respect).

I didn't get much of a dose reduction.. only 10%. They did some weird reduction in the numbers they use to calculate the dosage, so it might actually be more than 10%, but looking at the actual dosage difference, it's only 10%. I have to say that I don't think that's going to do much as far as alleviating some of my worst symptoms (anemia, neuropathy). Already I'm feeling more short of breath when walking short distances.

The newest issue is "capillary leakage." I've gained 12 pounds in excess fluid in my lower legs and ankles. I was put on a diuretic Friday, which is certainly making me pee more.

Ok, so anemia, neuropathy and now edema. Good times. Not to mention the constant eye watering and the nail issue. Speaking of which, I had to cut off another nail on one of my toes over the weekend.

I have to say, I'm getting a little annoyed with my oncology team. First of all, my oncologist has never talked to me about this 30 pound weight loss and then sudden 10 pound weight gain. I mean, shouldn't she have checked out my legs at my last appointment on 10/31? It was the infusion nurse who took the time to ask me questions about my water intake, how much I was peeing, whether my ankles were swollen, etc. She diagnosed the issue and then called my oncology nurse to say that I needed a diuretic.

When my oncology nurse called me later in the day to discuss the diuretic, I asked her if I needed to stop taking any of my other medications. She admitted that they aren't really very good at medication managment and told me to contact my family doctor about it. No one has told me how often I will need to come in for blood tests after the chemo is finished. I am on a very low dose of this medication and it's going to take awhile for all of the fluid to go away. This medicaiton tends to remove potassium and that has to be checked regularly. My family doctor also said my blood sugar has to be monitored regularly as well.

What's more, when I asked the oncology nurse who would be handling the long term management of the medication I'm taking for hot flashes, she said they should go away after chemo. Really? That's funny because my oncologist told me that taking the tamoxifan (which I will be doing for 5 years) will put me into menopause. Furthermore, I was already experiencing peri-menopause symptoms for 2 years before I was diagnosed, including hot flashes. I can no longer take the supplements I was using for them because they contain plant-based estrogens and the just isn't enough research to show whether or not they could contribute to a recurrence they way taking hormone pills would. So, I'm stuck taking a nerve medicine that for some reason reduces hot flashes as well.

It's all very frustrating, and I'm going to have a lot to talk about with my oncologist at my next visit!

Week 21

No chemo this week!

It's really hard to say if taking a week off has made an improvement in how I feel. Working a full week has taken its own toll, so I think it's pretty much a wash. By Friday night, I was wiped out and fell asleep on the couch while trying to watch last week's CSI on the DVR. On Saturday I had an eye appointment in Olympia that I was dreading.. not because of the appointment, but I was so weak and wobbly that I wasn't sure I would even make it. I was in bed by 7:00 and even forgot to feed the dog her dinner :(

I felt much more recovered on Sunday. My mom came over and did some cleaning and laundry and my sister picked up some things at the store for me.

I've noticed more intense tingling in the tips of my fingers on both hands. I had a hard time putting in my earrings this morning. This could be a deal-breaker as far as chemo this week. We'll see.

I have tomorrow off, so hopefully I won't be as wiped out this week as I was last week.

Mmmm.. Gummi Bears

I wandered to the dental office across the hall from my office this morning to get some ideas of how to deal with my swelling gums and bleeding when I brush my teeth. It turned into an exam, a new dentist and some dental products that should help and give me some relief.

My breathing feels a little better today.. I guess that makes sense - it's Thursday. I feel better just in time for another round of chemo. I'm glad I made the decision to not get chemo this week and hopefully I can build up some strength to get me through the final 3 weeks.

I realized last night that I will have to do all of my Christmas shopping online this year. I'm not going to trust that my red blood cells will miraculously multiply as soon as I'm done with chemo and give me enough energy and strength for that kind of shopping. I've put out requests for Christmas lists to my family so I can get started.

Some people have mentioned that I should have a "no more chemo" party when I'm done with chemo. I think I'm going to wait until I'm done with all my treatments and have a "no more treatment" party instead. Or maybe it will be an "I'm in remission" party. Either way, waiting until next spring makes more sense to me. I can't fathom having a party right now, and with it being holiday season.. it's just too much!

A change in the plan

I had a very bad night earlier this week when my cat decided to bolt from the living room to the bedroom and used my sore and explosed toe as part of her pathway. It was the last straw in a day where I was really struggling to breathe and just do the things I needed to do. And trust me, I don't do more than what I absolutely have to!

I had a good cry and then felt better, but was still upset enough to want to call off chemo all together, and would of if it hadn't been so late in the day.

The next day I called the research coordinator and told her that I needed a break this week from chemo, AND that I wanted a dose-reduction for the final 3 weeks. Hopefully this plan will negate the need for another blood transfusion.

Yesterday I used the Dial-A-Ride system here for the first time. It worked out really well, even though I had to cross the street (on a pedestrian bridge over the street) to the Health Sciences building for a class.

Now that I have the disability placard for my car, I've been driving to work every day. It's so much easier on me physically than taking the bus. I'm able to park in one of the handicapped spaces in my building. And since my sister is back at work (reluctantly) after her maternity leave, we are carpooling again, so that makes driving even easier.

Good news regarding my toe and thumb.. they have finally healed on the surface and I don't have to wear the bandaids anymore.

Week 20

My hct keeps going down. It was 28 on Friday. I saw my oncologist on Friday and there was lots of talk about dose-reduction, or skipping a dose. Ultimately, it was decided to give me the regular dose per the study protocol. Since the darbopoetin shot does not seem to be doing any good, they increased that dose by 25%. That is a very painful shot!

I am really feeling the effects of the anemia now. It was a hard weekend, but again, my sister pulled through and did a bunch of shopping for me. I've been talking with my oncology nurse about skipping this week's chemo... I know my hct is just going to keep dropping. I am skeptical that skipping a dose and doing a dose reduction will make much of a difference in the grand scheme of my anemia, since it takes so long for red blood cells to reproduce. My nurse told me that "it usually has a profound effect." However, I have bucked all the "usuals" with Abraxane. I feel like I am suffering more now than I did over the summer. Although, my doctor is pretty adament that the anemia itself is a result of the previous chemo. The fact that I'm still getting chemo, certainly isn't helping things. I have a call into the research coordinator to disuss this dose-reduction further. My doctor did say that she would prefer to go this route than do another transfusion. I don't really care, as long as it works!

After the chemo infusion on Friday, I went to Ballard to the auto licensing place and got a temporary disability parking placard. I've also been in contact with the disability services office at the UW about using the Dial-A-Ride service to get to the hospital instead of taking the shuttle. Dial-A-Ride will pick me up right outside my building and I don't have to walk those 3 blocks to the shuttle stop.

There is a possibility that Aflac is not going to pay me for this round of chemo. My policy states that they will pay for each chemo treatment that has a cost associated with it. SCCA is getting my chemo at no charge because it's a research study. However, there is still a cost associated with getting the chemo into me.. the infusion, etc. So hopefully that will work out. There is also a provision for investigational treatments, although I'm not sure this falls under that guideline. I just have to submit everything and then see what happens and take it from there.