Unfortunately, there was an "incident" on Friday when I went in for the second infusion. When I got into the room and into the chair, the nurse "reminded" me that I was to start on iron sucrose that day, and that the infusion time would take an extra hour. This was news to me! No one had called me about adding extra medication to my treatment. When I questioned her about it, she said I should have heard from the oncology pharmacist or the oncology nurse. She showed me the order, which was written the day before and no one had called me. The other issue was time. I'm in a carpool and had to leave by 4:30. Granted, it's just a carpool with my sister, but it would be very unfair for me to ask her to stay later at work, and adding that she's 8 1/2 months pregnant just made it worse. So, I told the nurse that I would not be getting the iron sucrose that day. I also told her that I wouldn't be starting anything new until someone called me about this medication. I also said that if I couldn't change my appointment times for the next 2 weeks, I wouldn't be starting this medication until July 18, after my sister goes on maternity leave and I start driving or taking the bus.
This kind of thing just really pisses me off! As if I have nothing better to do with my time but sit around at their convenience. I was talking to my friend about it and she had similar issues when she was undergoing radiation therapy in that every day when she got to the clinic they were running an hour behind. She was angry all the time about going in for treatment, and that's how I was feeling on Friday. I don't want to be angry when I'm getting my treatments! That isn't going to do me any good.
I think cancer patients are in a very vulnerable position and in large part have no choice but to cater to the "whim" of the treatment center. Whether they are running late or want to give a new medicine or whatever! I mean, what are we going to do, walk out? Not too likely to happen.
Monday morning I made a call to the scheduler and was able to re-schedule my times for this week and next week. Also, the pharmacist called me, apologized, and explained why she wants me on the iron sucrose. I don't have any problem with them making changes to my medications, adding or subtracting, or whatever they need to do. All I ask is that they give me the courtesy of a phone call! I will be seeing my oncologist on Thursday and will bring this issue up with her.
Yesterday I noticed a bit of a metallic taste in my mouth and when I was drinking a frappucchino there was a definite bitter aftertaste. This morning I had a cup of coffee and I noticed the same thing. So, I guess for now I will stick to tea and smoothies. I'm not going to be able to get rid of the metallic tasting saliva for the next 6 months, but I don't want to ruin my love of coffee either.
Today I went to the UWMC cancer center and met with their "beauty and cancer program" coordinator and did find a wig I liked. It's dark red with highlights and reminds me of the years when I used to dye my hair dark red. I need to get it trimmed and styled a bit though. The cool thing is that it's brand new and was free. I also got a scarf and 2 sleeping caps. I ordered several caps from Etsy that are all hand-made. I think they were originally designed for the operating room, but will do very well for me. And, they are really pretty. Here's a picture of one that I ordered:
I still may use my insurance to get another wig. I haven't decided yet. I've got the coverage and the prescription, so I should just do it. Between all of that and the things that MJ over on LJ is sending me, I should be in pretty good shape.
Yesterday I had a massage with a new therapist who is actually on my insurance. She is very wonderful and I'm going to really like her a lot. I learned some interesting things as to why my feet are hurting so bad. I've always been a believer and had an interest in foot reflexology, but I haven't looked at a chart in a very long time. Well the two places on my feet, one spot on the left and one on the right that hurt the most, correlate directly with breast cancer. The spot on my left foot corresponds to the right breast and the spot on my right food corresponds to the lymphatic system. I set up weekly appointments and will be spending a lot of time having my feet worked on! I also realized just how "nice" my body is being to me right now. There are some definite tight areas that I discovered yesterday, especially in my upper back, but I haven't had any pain. It will be good to get these worked out over the next few weeks and get back on a regular massage schedule.
I want to hire a personal trainer to work with me while I'm doing the chemo and after. I will talk to my oncologist about that, but I think it's a good idea. I want to find someone who has experience working with cancer patients and who (hopefully) isn't associated with a big gym. I need to call the breast cancer resource center in Tacoma and see if they know anyone.
I was thumbing through the Puget Sound Wellness Guide yesterday and ran across the BRCA story of someone I used to work with when I was at Madigan. I have never met her, but we used to collaborate on some projects together via phone and email. She works for the UW, so I sent her an email yesterday.
This weekend I'm kind of thinking of going to check out the Tall Ships, but I'm not sure I want to deal with the crowd. I don't really have any plans for the weekend except a BBQ on Friday with my sister and brother-in-law; and a party at my friend's house on Saturday. I think it will be a nice quiet weekend and hopefully not too hot!
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