My first appointment was at 9:30 a.m. We left Isabelle and Jean-Marc at my mom's house in Escondido where they would be spending the next 24 hours. We left early, just because Eric and I are both the type of people who get stressed out if there is the possibility of being late. With the nifty new commuter lanes on the 15 freeway that go all the way up to Escondido, we were really early! It was okay, though. I was able to return my mammogram films that I had checked out for the MRI. I'm such a good girl. The sign on the door said they didn't open until 9 a.m. So I stood outside waiting, even though it looked like the door was unlocked. About 10 minutes until 9, a lady popped out and said I could come in. She commented on how considerate I was not to just barge in. Hey, rules are rules, right?
When I checked in at the general surgery department at the Kaiser Vandever office, I noticed a calendar on the wall. Every time I look at a calendar, the 22nd of July pops out at me. I then looked at today's date...the 12th. I realized for the first time, that the two dates were only 1 row apart. My surgery is next week. That sounds a lot better than 10 days away.
I first met with Judy, the breast care coordinator for Kaiser in San Diego. She introduced me to THE CAMISOLE. After surgery, I'll be in a tighter fitting camisole that velcros up the front. I'll have 3 drains to deal with. (I found this picture from the Be a Survivor website) One on each breast, and one in my left lymph node area. Lovely. About 3 times a day, I'll need to measure the output from my body that collects in the drains and dump the contents. I also need to go to a local store and get a couple of camisoles for the post-operative period. They come with little velcro pockets to hold the drains. I can rip those off and use them with the post-surgical tighter camisole too. Then she started pulling out prosthetic breasts. ("Foobs" as I've seen on some bulletin boards.) After I've healed from surgery, I can be fitted for these. Kaiser will pay for 3 post-mastectomy bras each year (Nordstrom's is on their vendor list!). They will also pay for a pair of foobs every 2 years. We had a nice conversation about what really matters about your prognosis. We won't know how "bad" it really is until about a week after surgery when the pathology report comes back. I am very worried that I might be a stage 3 since I already have lymph node involvement. Judy said that its not so much the "stage" you are put at after pathology. But your personal strength, attitude and situation. In a way, that sounds like a cop out for someone with advanced cancer. Its like....don't worry if you're a stage 3. But maybe that is true. I don't know. I personally am freaked at the concept. But it is a very real possibility for me. I do know these things: I am in the strongest, most fit condition of my life; I'm young for breast cancer; other than cancer, I'm healthy; I've definitely got the will to live; I am STRONG; and there are a lot of people out there praying for me. I know that this whole situation is in God's hands-only He knows the number of my days. I certainly hope that He is using this (and my survival of it), for His glory. But maybe His plan is otherwise. I don't know. But I do trust Him.
Judy also gave me a lanyard with a clip that can hold the drains so I can shower after the surgery. We had a reassuring conversation about my oncologist, Dr. P. I learned that he is the head of research for all of Kaiser in Southern California. He's a very smart guy. I had asked everyone to pray that the oncologist that I happened to be assigned to be "the one." I think the fact that I've heard from multiple sources that he is very cutting edge on the research shows that it is another area where prayer was answered. Praise God!
I also met with my surgeon, Dr. K, for a pre-op appointment. I had definitely decided on the bilateral mastectomy. I still had questions about doing a sentinel node biopsy on the right/healthy side. The MRI and PET scan did not show any cancer on the right side. The chances of any cancer being there are small-nothing has shown up according to the best diagnostic tools. The chances of any cancer having spread from there to a lymph node is even smaller. There aren't any studies to really support a sentinel node biopsy of that side. When we consider that I won't have lymph nodes on the left side, she would prefer to leave the right side alone. As it is, I have a 10-15% chance of lymphedema (arm swelling) on the left side. Based on all of this, I decided to forego the sentinel node biopsy on the right side. If the pathology on the right breast turns out that there is cancer there, I'll have to have surgery to remove the nodes on that side. But at this point, the benefits don't outweigh the risks.
One bright spot. Dr. K did a breast exam on me. I've been having these imaginings of the tumors growing at a frighteningly fast rate. Imagine watching a ranunculus flower bloom with time lapse photography. I had this vision of Dr. K exclaiming, "Oh my! It is much bigger!" But she didn't. That was a relief.
On my way out, I was given a surgical "kit." It is just a folder that has some pre-op instructions, some antesthesia questionnaires and a packed of hibiclens. I'm supposed to wash my chest with that on the day of surgery.
From there, we went over to the laboratory at Zion. I had to get my blood drawn there for the genetic testing. I didn't have an appointment, so I was ready for a wait. They were on number 66 when I got there. I was number 82. It was a bit of a zoo atmosphere. One poor woman was there with two small children who were fussing very loud. I didn't get annoyed at her, although
others did. I pitied her. What an awful place to have to wait with little ones. What was worse was some man sitting right behind me. (The chairs are placed back to back). He was sneezing and snorting over and over. It was so gross--I could just imagine all of the germs he was spreading around me. Yuck. I was able to also do my pre-op bloodwork and pregnancy test. The lab had told me it had to be one week before surgery. Being the "good girl," I was going to wait until Thursday. Dr. K said today would be okay. That was nice, because they were able to draw the blood for both tests out of the same needle poke. Gotta save those veins for chemo.
After the lab, we had about 6 hours to kill before our meeting with the plastic surgeon, Dr. S. We could have come home to North County and then gone back down again. But we decided to make a day of it and do something fun. We headed over to La Jolla and had a nice lunch at George's at the Cove. The food there is delicious and well prepared. And not as expensive as you might think. A glass of wine is as much as a lunch menu item. After lunch, we walked around. I
was a bit drained from the morning, so we found a bench overlooking the Children's Pool and just watched the scenery. I'm not sure how the place got it's name, but it isn't a pool, and children don't go in it. It's a part of the beach where harbor seals have made home. We sat there and watched the seals, the people watching the seals, the sea birds. It was all very relaxing. We even saw a bunch of dolphins swimming northward. While I sat there, I logged onto the Kaiser website to check the results of my lab tests that I had just taken. They usually are pretty quick. Sure enough, the pregnancy test came back....negative. Whew. That was one I was a little worried about. My cycle has been a bit off since my diagnosis. I'm sure its the stress. Last month, I was a week early. Using that date as day 1, I should have started on Saturday. But I hadn't. Getting pregnant right now would be terrible. The cancer would grow because of the estrogen and I couldn't really treat it effectively. So thank you Jesus that I don't have to deal with those difficult decisions.
We also explored a part of La Jolla that was new to us...the caves. We didn't actually go down in them, but we went on the bluffs overlooking them. They do kayak and snorkeling tours of the caves. I'd like to do that someday-it looked like fun. Although the seals nearby were not happy with the visitors. We also found a trail that paralleled the coast. We walked on it as far as we could and then came back.
We still had a bit of time to kill, so we drove to Shelter Island and walked a bit there. By then, all of the outdoor exposure was starting to get to Eric. He has a tendency to get headaches if he's out in the UV too long. He popped some advil, but they didn't really help.
Our last appointment of the day was with the plastic surgeon, Dr. S. We got there a bit early. (Again, usual for us). The receptionist took us to a small room and put a VHS video on about breast reconstruction. I'll have to admit...it made me feel a bit ill to see it. For the more involved procedures where they transfer tissue from one body part to re-create the breast, they just used illustrations, rather than actual pictures. I'm grateful for that, because just the pictures made me want to puke. One in particular, the TRAM flap, they use part of your abdominal muscles. The result is a scar that goes from hipbone to hipbone--even bigger than a cesarean scar. Plus, you lose function in your abdominal muscles. One woman who had the procedure couldn't lift both legs at the same time. I thought of some of the Jillian exercises I do all the time (reverse crunches, lying leg raises). I wouldn't be able to do them anymore. No thank you. Eric also thought that compromising a healthy part of your body for aesthetic purposes didn't make sense. I'm glad he's not that attached to the idea of reconstruction if that is the cost.
We had to wait awhile to be seen by Dr. S. That was not good, because Eric was already not feeling well. We were tired and getting hungry too. He really had to fight the urge to get up and do his huffy French routine at the receptionist. We finally were led to a room and I was told to
put on a gown.
Dr. S came in after awhile and introduced himself. I was referred to him by one of the women in my "Look Good, Feel Better" session. She loved him, and said that Dr. K (the surgeon) worked with him often. I didn't take to him right away, but he seemed competent. He said his preference is to do implants with expanders. It is the least invasive method of reconstruction. Basically, they insert an expander under the chest muscles. Then you go in every couple weeks and they inject saline into them bit by bit so they grow. After a few months of that, you get the permanent implants in, either saline or gel. He prefers the gel, but acknowledges that some women prefer saline. Whatever. I have time to research that.
It was strange having a male doctor examine my naked breasts with my husband sitting right there in the room. I wonder if it was weird for Eric too.
I may not be a candidate for the implants on the left side, however. That is if I end up needing radiation after chemotherapy. Radiated tissue does not expand well. In that case, he would recommend a LAT flap on the left side and the implant on the right. In the LAT flap procedure, they take part of your latissimus dorsi back muscle and create a breast with it. Yikes. I'd have to think long and hard about that one. Again, I would lose some mobility in my back muscle. Dr. S. said it really would be very targeted moves that would be affected. We won't know any of this until after we get the pathology report back and hear from the oncologist, Dr. P. about what his recommended therapy is for me.
All in all, it was a very exhausting day. But it was good to be doing something. It was also nice to realize that surgery is NEXT WEEK. The only things left for me to do is get some chest X-rays and pick up those post-surgical camisoles. And wait, of course.
My prayer requests today are:
- As always, that the cancer has not spread past the lymph nodes. That the nodes are not so extensively involved that it would push me into a stage 3 cancer.
- That I will not need radiation after chemo.
- I could always use more sleep. Today I woke up at 4 a.m. and was in a doze until 6 a.m.