According to my lab results, my liver enzymes are elevated. My oncologist had to check to be sure it was okay to administer the full dosage of Taxol. I was very nervous that it would have to be delayed but she decided to go ahead with the full dose.
I read that icing your hands and feet during administration of Taxol can prevent neuropathy. There are some very expensive gel gloves and slippers you can buy for this but I just put a bunch of ice in baggies and brought it in an insulated bag. The nurses told me that they weren't familiar with this but even though it looks and feels weird, I think it's definitely worth trying.
The nurse I had today was the same one who messed up my second AC chemo administration, and she seemed just as frazzled today. At first I tried to go out of my way to connect with her, but after a while I decided to just tune her out. The friend who was with me agreed that this nurse was strange. Everything went okay with the chemo though, so I just enjoyed the time visiting with my friend and talking about Guatemala, which took my mind off the weird nurse.
Tuesday, February 25, 2014
Monday, February 24, 2014
Counseling service
Thankfully, by coincidence the appointment I had scheduled with the counseling service a while back ended up being immediately after my plastic surgery consult. This gave me an opportunity to debrief on the mixed messages I got from the plastic surgeon. After talking with the counselor, she said she could see that my self image isn't 100% tied to my appearance, and that is something positive I have going for me. She also said that the people who do better are the ones who go into surgery thinking, I'm going to look okay in clothes. (Meaning that many people have unreasonable expectations for how reconstruction will look.) She also told me that reconstruction is definitely painful. All of this is really hard to face but I told her I that I definitely do better when I have as much information as possible ahead of time. She gave me some online resources, including The Happiness Trap. She was very pleased that I'm already doing meditation. I connected really well with this counselor and I'm very grateful for the timing of this appointment.
Plastic surgery consult
I asked my oncologist for a referral to a plastic surgeon, because now that I am more than halfway through the chemo, I'm starting to think more about the surgery and feel somewhat anxious about it. She said they have seen good results from a woman who is new to UNC. I first met with the plastic surgeon's nurse, and the first thing she asked me was, Are you going to have radiation? I said that hasn't been decided yet and that my surgeon told me I won't know until after the surgery. She then told me how reconstruction is done when the person doesn't have radiation. She told me that expanders (that look like deflated implants) are inserted, and then gradually filled with saline each week until they reach the desired size. They are then replaced with implants. The nurse showed me a few photos. As she was paging through photos on her iPad she said, "Oh no, I better not show you that one." Hmmmm....maybe this doesn't always turn out well? Even the photos that looked reasonably okay did not look real, and made me feel uncomfortable.
The doctor then came in and said she had emailed my surgeon to ask him whether I'm having radiation. I told her he doesn't know because it will be determined after surgery. She then said that if I am having radiation, then nothing the nurse just told me would apply. She said she would need to remove a muscle from my back in order to create a flap on the radiated side. In my mind I was already thinking, there's no way I'm going to deform and weaken my back to have a fake weird breast. Then she said there's a new procedure that involves fat grafting. She must have noticed the reflexive disgusted look on my face. She asked me to lift up my shirt, and said, "Never mind, you don't have enough fat." (Okay, that is definitely the weirdest compliment I've ever gotten.) She then told me that this procedure has a 50% failure rate, and that she doesn't like to do it unless the patient understands the risk. At this point I started shutting down and no longer processing what she was saying.
This whole consult was very disturbing. Mostly because my surgeon had sort of matter of factly said, "You'll meet with the plastic surgeon and decide what shape and size you want," like it was something easy to accomplish. In fact, it is very complicated and involves multiple painful procedures. And in the end, there is no feeling in the reconstructed breasts. It seems that since insurance companies are required to pay for reconstruction, there is an assumption everyone will want to do it. If there was a great option, I would be all for it, but none of this sounds good to me.
The doctor then came in and said she had emailed my surgeon to ask him whether I'm having radiation. I told her he doesn't know because it will be determined after surgery. She then said that if I am having radiation, then nothing the nurse just told me would apply. She said she would need to remove a muscle from my back in order to create a flap on the radiated side. In my mind I was already thinking, there's no way I'm going to deform and weaken my back to have a fake weird breast. Then she said there's a new procedure that involves fat grafting. She must have noticed the reflexive disgusted look on my face. She asked me to lift up my shirt, and said, "Never mind, you don't have enough fat." (Okay, that is definitely the weirdest compliment I've ever gotten.) She then told me that this procedure has a 50% failure rate, and that she doesn't like to do it unless the patient understands the risk. At this point I started shutting down and no longer processing what she was saying.
This whole consult was very disturbing. Mostly because my surgeon had sort of matter of factly said, "You'll meet with the plastic surgeon and decide what shape and size you want," like it was something easy to accomplish. In fact, it is very complicated and involves multiple painful procedures. And in the end, there is no feeling in the reconstructed breasts. It seems that since insurance companies are required to pay for reconstruction, there is an assumption everyone will want to do it. If there was a great option, I would be all for it, but none of this sounds good to me.
Tuesday, February 11, 2014
Taxol 1/4
Today I switched to a different chemo that is supposed to be less toxic than the AC chemo I've completed. The main side effects I am supposed to expect are fatigue and body aches.
Taxol also has a potential side effect of neuropathy, so I did some reading about how to prevent that. According to some small studies, taking substantial amounts of L-Glutamine (an amino acid) may prevent neuropathy, and the patients who took it were also more likely to stay on schedule with chemo. My oncologist said there never were any large studies to confirm whether it's effective, but it would be okay with her if I take it. I'm going to try it according to these guidelines.
Glutamine is also supposed to help with mucositis. I'm still also chewing on ice during the chemo to try to prevent that.
Apparently many people have an allergic reaction to a preservative in Taxol. For that reason they give you a high dose of Benadryl and steroids and watch you carefully for the first hour. Thankfully, I didn't have a reaction, so they were able to speed up the infusion. It still took 3 hours. Overall, it was definitely more pleasant than AC chemo.
Taxol also has a potential side effect of neuropathy, so I did some reading about how to prevent that. According to some small studies, taking substantial amounts of L-Glutamine (an amino acid) may prevent neuropathy, and the patients who took it were also more likely to stay on schedule with chemo. My oncologist said there never were any large studies to confirm whether it's effective, but it would be okay with her if I take it. I'm going to try it according to these guidelines.
Glutamine is also supposed to help with mucositis. I'm still also chewing on ice during the chemo to try to prevent that.
Apparently many people have an allergic reaction to a preservative in Taxol. For that reason they give you a high dose of Benadryl and steroids and watch you carefully for the first hour. Thankfully, I didn't have a reaction, so they were able to speed up the infusion. It still took 3 hours. Overall, it was definitely more pleasant than AC chemo.
Sunday, February 2, 2014
A message
"Take care to be as peaceful and nurturing as the cow in the meadow; you are strong enough to be gentle."
This message was timely because I was feeling restless and impatient today. It reminded me of this photo I took in Guatemala. These cows were grazing in a meadow across the road from the small school where I was taking Spanish classes in San Juan del Obispo. A relaxing image for a relaxing message.
This message was timely because I was feeling restless and impatient today. It reminded me of this photo I took in Guatemala. These cows were grazing in a meadow across the road from the small school where I was taking Spanish classes in San Juan del Obispo. A relaxing image for a relaxing message.
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