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.

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. 

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.

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.

4 Down, 4 to Go

Today was my last experience with AC chemo.  AC chemo is quite toxic and the nurse has to wear protective gear to administer it.  I think I've done a pretty good job psyching myself up to receive AC chemo each time.  AC chemo looks like Campari, which I have enjoyed in the past and even referred to as my "poison."  Campari has had some odd ad campaigns.  This one in particular seems fitting - I imagine the AC fairy delivering my poison to the exact right location.  I'm not sure I'll ever be able to drink Campari again, though...

My friend Kristin went with me to chemo and was a very calming presence.  I also had a wonderful nurse who administered the chemo very slowly. My friend and colleague Ina came to pray with me during the chemo administration and I definitely felt better after this chemo than after the last one that was administered too quickly.  Kristin made me some root vegetable soup that tasted incredibly nourishing.  I ate two giant bowls of soup when I got home and I rested very well that afternoon and evening. 

Inspiration - Diana la Cazadora

Recently I remembered the statue of Diana (the Roman goddess of hunting) that I had seen in Mexico City several years ago.  She is a very impressive figure.  I thought it would inspire me to hang an enlarged version in my bedroom, but I only had a tourist photo of the statue and it wasn't attractive or high quality.

I looked at Google images for "Diana la Cazadora" and came across an incredible photo by Oswaldo Ordonez, who is a teacher and photographer in Monterrey, Mexico. I wrote to him and asked him if I could have permission to have the photo enlarged onto canvas and he sent me a large, high quality digital file version.  I am so grateful to him for taking this photo and sharing it with me.   You can see more of Oswaldo Ordonez' photography here.

(The canvas print was done by Canvas on Demand.)

Here is a typical tourist photo of the statue, to give you an idea just how awesome Oswaldo's photo is. 

And here is a cool photo of the live model, Helvia Martinez Verdayes, posing with the statue in 1942. 

3rd AC chemo

This chemo session made me a little nervous. AC chemo is two different drugs administered in two steps.  The first infusion is more toxic and is done "by hand" by the nurse; the second is done through IV drip.  I had a different nurse this time, and she administered the first chemo twice as fast as the previous nurse had.  I was chatting with my dear friend and colleague Ina and didn't notice how fast it was going until the nurse announced it was over.  Because my previous nurse had specifically told me it should be done over 20 minutes, and this was less than 10 minutes, I expressed some concern to the nurse.  She assured me that the time depends on the dosage and that 10 minutes was fine for this dosage.  However, I soon began to feel a little strange. (Normally, chemo day doesn't have too many side effects, because they load you up with so many fluids and anti-nausea meds through IV.)

By evening I was feeling different enough in comparison to the previous times that I was worried and decided to call the oncologist on call.  She told me it wasn't "dangerous" that the chemo was administered quickly.   She agreed it should be done consistently and said she would write a report that would trigger a review by pharmacy and nursing, to make sure the procedure is clear.  On a humorous note, she seemed impressed by my detailed explanation and said I was a "better reporter than the typical patient."  Later the nursing supervisor called me and apologized for the situation.   The hospital is serious about continuous quality improvement and I'm glad to be of service!