I received quite a few texts and emails asking how I am doing the past few weeks –and I know part of it is because it I have not posted since the beginning of June. In addition to the daily radiation appointments (more on that below), I have had appointments with the surgery department, medical oncologist, health psychologist, nutritionist, physical therapist, etc. I also went back to work in June – I mostly work from home and go to the office about once a week.
A few people have asked for details about my radiation appointments. Every weekday I head to the hospital for my radiation treatment. Sometimes I walk (about 15 minutes) but most of the time I take the J shuttle. CPMC opened a new campus right next to my apartment and the hospital runs shuttles that goes to all the different campuses including where I do my radiation (Pacific Campus).
Once I get to the Pacific Campus, I take the elevator down to Floor B – The Radiation department is in the basement for safety reasons. I walk through the waiting room and give my name to the front desk. Then I head to the locker room to change. I need to remove everything from the waist up and put on a gown with the opening in the back. There are lockers if I want to lock up personal items.
I wait in the locker room for the radiation therapists to call my name. This Radiation department has two radiation rooms and two therapists work on each room. Most of the time, the therapists I work with are Cora Espina and Don Chan. The two radiation rooms are set up differently and use a different machine so patients are assigned to only one of the rooms and all the radiation is done in that room. Once my name is called, I walk to the back and am asked for my birth date I before I go in the room. The first thing I do when I enter the room is look for my name on the screen in the room.
I then lie down on this table Underneath the sheet is a molding that was created during the planning session. I remove my right arm from the gown, put my arms up, grab the white rods and turn my head to the left.
Cora and Don then use the sheet to make slight adjustments of my position. There is a ruler on both sides of the table and they need to make sure tattoos they put on me during the planning session are in the correct place. After the adjustment, Don usually goes to the back room and Cora stays with me. She asks me to hold my breath and communicates with Don to make sure everything is correct. Then Cora joins Don in the back room. There are two cameras in the room so they are able to make sure I do not move. They also can hear me and I can hear them.
This is the part of the machine, Gantry, which provides radiation treatment. The blades change position so that radiation is directed correctly. The machine also rotates 360 degrees. Every treatment, I am “zapped” 4 times with the Gantry at different positions.
- The Gantry is placed at an angle to the left side of my right breast.
- The Gantry is then placed above me. The radiation here targets the rest of the breast and the lymph nodes.
- The Gantry then rotates around me and is at the exact opposite angle of position 1
- And finally the Gantry is underneath me at the opposite of position 2
I need to hold my breath for about 30 seconds for 3 of the 4 treatments and for about 15 for one of them. Cora told me that I need to hold my breath to protect my lungs.
The radiation treatment itself happens daily, but my appointments every day may be different due to other factors. The first five days, x-rays of the treatment field were taken before radiation. The x-rays allow the doctor to make sure the radiation is hitting the correct areas of the body. After that, x-rays are taken every five days. One day out of five they also double check the measurements before radiation. For me that happens the day after X-ray day. I have to hold the same position while all of this is done.
I also meet my radiation oncologist Dr. Abendroth and a radiation nurse once a week. Both of them look at my skin and answer any questions I have. Depending on what day it is, the whole process can take 30 to 60 minutes (not including commute). On the day that I am just getting radiation, it takes more time to change, set up then it does for the radiation, which is about 5 minutes.
As I mentioned in my last post, I am getting 33 treatments. The first 28 are to treat the whole right breast and lymph nodes. The last 5 will just treat the area of the original tumor so those appointments may be different. I ended up starting radiation on June 12th – which means that I have now completed 26 treatments - only 7 more to go!!
The side effects for radiation are cumulative and recently I have started to notice that my skin is darker and starting to peel. I also can see some marks on my clavicle.
As I mentioned in previous posts, one of the side effects of lymph node removal is Lymphedema, which refers to swelling in the arm or leg. If the lymphatic system is blocked, then fluid will build up which leads to swelling. Since 9 of my lymph nodes were removed, I am now at risk for getting lymphedema in the right arm and the risk does not decrease with time unfortunately.
After surgery, I had a bit of pain, but the worst was my upper right arm and under my armpit (where the lymph nodes were removed). I was worried that the pain was due to lymphedema and not because of the surgery. I had a follow up appointment with Dr. Lee Char( breast surgeon) so she could look. I did not have a chance to take a picture with her in previous appointments but did this time:
She had looked at the CT scans from the radiation simulation and she did not see any fluid buildup. She also could not see any swelling though she was not sure why my upper right arm was hurting. She recommended that I see a certified lymphedema physical therapist so I can learn about prevention. It is good I went to see her because I also asked her to remove all my bandages and put on new ones if needed, because the plastic surgeon and nurses had not looked at some of the wounds since surgery. Once she did that, she noticed there was an open wound in my right breast- the wound needed a few extra days to heal before radiation. She wanted me to delay the start of my radiation a few days because of this. No matter how great doctors and nurses are, we still need to ask questions and advocate for ourselves as patients.
It took me a while to find a certified lymphedema physical therapist in network. I finally did meet with someone who hopefully is in network - Irene Dedina at the Saint Francis Medical Hospital (I will find out for sure when I get the bill). She normally works with patients who have lymphedema and she said it is rare for people to come to her to prevent it (She was glad I was). She measured my arm as a baseline.
Since I am going through radiation she said I should not do too much exercise (no elliptical or weights). She gave me a few simple exercises to do and said that we would work on this more after radiation. She also gave me many tips for prevention – no injection, blood draw, blood pressure on right arm. Do not carry anything heavy; do not put anything over the shoulder. No cutting cuticles, acupuncture, deep massage, hot tubs, hot baths, shaving, waxing. Avoid repetitive movements against resistance with arm- scrubbing, pushing and pulling. Avoid sunburn, cuts, insect bites, sports injuries, etc. Wear gloves to any housework indoors or out. She also told me that I will need to wear a compression sleeve every time I fly due to cabin pressure- this was timely because I had a trip coming up. I spent the next week or so trying to find the correct compression sleeve.
I rely so much on my right arm to carry things, pull/push to open doors, scrub dishes, etc. I try to remember to do most of these with my left arm now.
When I started going to radiation, I noticed a sign for a lymphedema specialist. I asked if I could see her but they told me she is not available for breast cancer patients. I asked a couple more times because I really wanted to talk to an expert about lymphedema (this is before I had an appointment with Irene). Finally, one of the nurses spoke to the specialist and she said that of course she would meet with me. Turns out the specialist was Saskia Thiadens who was the founder of National Lymphedema Network and had been an advocate for breast cancer patients in regards to lymphedema since the 80s. She said that doctors do not take this condition as seriously as they should and that ideally she should be meeting with patients before surgery. If I had met with her before, she would have taken a baseline measurement of the limbs in both arms and test the fluid. ( This is frustrating because I asked about this many times and I would have made the time to meet with her before surgery or immediately after if I knew she was available – like I said – you have to be your best health advocate).
She did take my measurements and tests and everything seemed okay – my right and left arm had the same measurements and she said the amount of fluid is normal so far. I had already purchased the compression sleeve by then so I wore it and asked her to make sure it was okay. I was getting a bit paranoid because there really is not as much information about this as there is about radiation or chemotherapy in general. She said I should wear it a few hours a day for a few days just to get used to it before my flight.
Today is 7 months since my first chemotherapy appointment (December 21). So far, I have been focusing on my existing treatments and have not had much time to think much about the future. As I am getting to the end of radiation there is a lot to think about and it can be overwhelming and a bit scary. I will be taking three more weeks of medical leave to take me to the end of radiation, allow the skin to heal, and figure out what comes next. I also have a lot of medical paperwork piling up that I need to organize.
Since I spend most of the time by myself during recovery and since I am working from home, I try to make plans with family and friends when I can. I also have had a few visitors. Here are some pictures with family and friends from June. I’ll post July pics in my next post.
My friend and coworker Jesse stopped by one weekend with lunch. Here is a picture of us in Japantown. Another friend Sreoshi was in town (from LA) for a conference so we met up one evening for dinner
My cousin Vivek, Rupali and kids Nandini and Naman visited from Roseville so we all met up to hang out. Here we all are at Lafayette park.
Here is a picture of the kids at Smitten Ice Cream on Fillmore St. - I am not eating sweets as I go through cancer treatments but Nandini is having what I would have tried- Brownie Sundae on waffle cone- Yummy!
I joined Gaurav, Kimberly and Yash to root against the warriors one evening and I met up with Margaret for a walk in the Presidio the next day.
We ended up going to this special exhibit on Japanese interment camps at Futures Without Violence Museum - Then They Came for Me. I will have to go back to spend more time there- here is a quote from the museum.