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!