Another meeting with surgeon

After doing a lot of reading - and thinking - about reconstruction options, I decided that none of these options are good (for me) and that I do not want to undergo multiple surgeries with multiple opportunities for complications.  I made an appointment with my surgeon to ask him to do the bilateral surgery at the same time, so I can have one surgery and be finished.  The appointment only lasted about 3 minutes because he said that would be fine.  He certainly didn't try to talk me out of it, which I take as further validation of my impression that complex reconstruction doesn't have great outcomes.  As my oncologist put it, "You want to be supportive if it's what people want, but we see a lot of people with chronic pain." All right then!

I told my surgeon I'm concerned about developing lymphedema and asked him whether there is anything I can do to prevent it.  He said it is more likely to occur if he has to remove the lymph nodes under my collarbone, which he won't know until he looks at them during the surgery.  He said I can "practice good arm and hand hygiene." In other words, don't do anything to introduce an infection.

By all accounts, my surgeon is "brilliant." Any time I mention his name I hear something positive about him, so I have to trust that he will give me the best possible outcome.

Taxol 4/4

Today was my last chemotherapy.  Many lovely friends and family members have accompanied me to chemo but today I decided to go by myself.  I just felt like sitting quietly and didn't want to interact with anyone.  I also felt a little anxious because I was worried my liver enzymes would be elevated and delay the chemo.  They were actually way down, and the doctors asked me what I had been doing.  I have to say, I think it was the dandelion root tea I drank after every meal!

Radiation Oncology consult

I asked to meet with the head of radiation oncology.  My surgeon had told me that whether I need radiation would not be decided until after my surgery, based on whether any more lymph nodes are "involved" and how many.  I read some research articles that seemed contradictory regarding the specific criteria. The radiation oncologist spent a very long time talking with me. He told me my impressions from the research articles were correct and then showed me a couple of articles he has published attempting to clarify the guidelines for radiation. He basically told me straight out that I should definitely do radiation, based on what is already known about my profile.  He showed me statistics that demonstrated that radiation would improve my survival more than the Taxol I'm currently receiving.

This was hard to hear, because I already knew that options for reconstruction are not good (from my perspective) following radiation.  He told me that more people are choosing not to do reconstruction and that it doesn't turn out well for many people.  I felt this doctor was being very straightforward with me.  He said that everyone on the team wants to feel they're responsible for saving the patient's life but in reality it's the whole team working together.  I told him that I'm concerned about lymphedema, because from what I've read, if I have lymph nodes removed and have radiation, I'm almost certain to develop it. He said that's not true, that he would be very careful not to overlap certain margins, and that the chance is smaller than I'm thinking.  Here's hoping.

The radiation oncologist told me that I am eligible for a research study in which I would be randomly assigned to radiation or no radiation, but he advised me not to take the chance and to just do radiation.  He asked me if I would like to have my case discussed at a case conference and I said that would be fine.  Later the nurse left me a message saying that the team discussed my case and they were all in agreement that I should have radiation, regardless of the outcome of the lymph nodes removed during surgery. I will have to go every day for 6 weeks, from late May through early July.  They said that it will be okay for me to go to Guatemala in late July/early August.

In the end, I'm grateful that I have another caring and thoughtful doctor and that radiation will be walking distance from my office. Many people have to arrange temporary housing while going through radiation, so I do feel fortunate to have access to great care.

Taxol 3/4

I have been very preoccupied for the last two weeks, because my liver enzymes were elevated last time I received Taxol, and I really want to stay on track with the schedule.  I did some reading about what I can do to protect my liver.  The diet I'm already following covers a lot of bases (no alcohol, no fried foods).  I went to acupuncture two extra times, I drank dandelion root tea after every meal, I tried to exercise more and I tried to get some more time in the sun.  I have no way of knowing exactly what was responsible, but my liver enzymes were down this time, and I was so relieved.

My friend Kristin came to sit with me. This time my favorite nurse was assigned to me, which was a great relief.  He gave me pillowcases to put over the "ice baggies" I'm applying to my hands and feet so I wouldn't get frostbite (which may or may not be worse than the neuropathy I'm trying to prevent).

The main side effect I'm experiencing is fatigue.  I haven't had any mucositis, which could be because I've been taking glutamine, because I've been chewing ice during the chemo, or both. 

Meeting with surgeon

After meeting with the plastic surgeon, I decided to meet with my surgeon again to try to get a clearer idea of whether I will have radiation and/or what my reconstruction options are.  I originally told him that I didn't want to do a lot of research because I felt like it would raise my anxiety level, but I have been doing research, because I now feel like I need to know what the options are and I definitely don't have enough information.

I had a list of about 10 questions. I first met with my surgeon's fellow, who listened to all my questions and then went and talked with my surgeon.

When my surgeon came in, he said, you only get one chance to get a good reconstruction.  Therefore, his plan was to do surgery only on the left breast.  Then if I need radiation, that side will be reconstructed first.  Later, the other side will be done, to try to match the left.

He said he will remove axillary lymph nodes during my surgery and these will be dissected and analyzed.  Whether I need radiation will be determined by whether any of these nodes are "involved" and if so, how many. 

I had asked whether I could get my port removed after I finish chemo. He said the port needs to stay in until the surgeries are completed.

I felt like, reading between the lines, my surgeon thinks I'm going to need radiation. He also seemed to be making some assumptions that I am going to do reconstruction.  Today was the first I had heard that both sides would not be done in the same surgery and it was not great news to me.  I made a decision early on to do both sides because I don't want to spend the rest of my life worrying about it showing up on the other side. However, I think it will be much harder to do this in two separate surgeries.

I felt like I definitely needed to talk with radiation oncology to get the facts on what would be involved if I do need radiation and exactly how it affects reconstruction options.  I really didn't like the radiation oncologist I met with right after my diagnosis so I asked for an appointment with the head of radiation oncology.

Taxol 2/4

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.

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.