January 1 2019. The preferred patient/doctor communication tool at UCSF seems to be MyChart (a web-based site that offers personalized and secure online access to portions of my medical records to help manage and receive information about my health including scheduling appointments, messaging my health care team, filling out pre-appointment questionnaires, etc.).
I didn’t hear back from Dr. Rugo until after the Christmas holiday ended. She messaged me in MyChart. She let me know she was happy with my decision and that her practice assistant Em would be in contact. Em called soon after and we talked about scheduling all my chemo treatments. She said Dr. Rugo wanted me to get a port. I told her that Dr. Rugo had told me that if, after three treatments, the tumors were not beginning to shrink, I could quit. Also, Dr. Ewing had said that if I just could not tolerate the side affects of the chemo after one treatment, it was okay to stop. With that in mind, I asked if a port could be put in after the third treatment? She told me she would ask Dr. Rugo, but it might be risky to get a port when my immune system was compromised by treatment. My little voice is telling me that I’m probably going to have to get a port. Ugh. I let her know that Dr. Ewing wants to implant clips at the site of the tumors before chemo. That way if the cancer does dissolve the clips will mark the cancer sites making it easier to go in and remove any remnants once I’ve completed chemo treatments. Em says she will talk with Dr. Ewing’s scheduler to try to get that done the day of chemo. Apparently, I also have to meet with the Chemo Nurse to get a chemo training before my first treatment. It’s required. I ask if I can do that remotely. Em will ask, but they prefer face-to-face. Rugo also wants an EKG done and bloodwork. Em says she will call me back once she gets all my questions answered. She also tells me that when I message Rugo on MyChart, the message is read by her entire team. So the easiest way to communicate with Em is through Rugo on MyChart. “Okay,” I say, “there is one more thing, has it been confirmed that my cancer is triple negative?” She will ask Dr. Rugo.
After we hang up, Steve and I talk about everything that needs to take place before they ever put a needle in my arm. We agree that it would probably make it easier for everyone if we spread it out over two days. I messaged Rugo/Em with the following, “Rather than try to do everything in one day, would it work for me to come down the day before my first treatment to get all the pre-treatment things done and then come the next day for chemo? My husband and I would simply spend the night if that would work out.”
Em called the next day letting me know that having two days was making it possible for her to get the first treatment scheduled and she would have all the treatments scheduled by the end of the day. The plan was for me to get blood work done and see Dr. Rugo on Monday, January 7. Rugo had agreed to delaying the port. On Tuesday, January 8 she had scheduled the chemo training at 11a and my first infusion would be at 1:30p. I asked how long the treatment would take—3 hours. The next appointment would be on Tuesday, January 15 at 2:40p, but for this appointment and all future treatments, I should arrive an hour ahead of time for a blood draw. She also tells me that I can get the EKG later, when it’s more convenient. She is waiting to hear from Dr. Ewing’s scheduler about the clip implants.
As Em talks, I am keying everything into my iPad calendar. It’s overwhelming and surreal to be going through this exercise, but I finally feel like I do have a health care team that is ready to take care of me. After 4 long months there is a real sense of urgency.
Later I go into MyChart to see if all the appointments have been scheduled. They have. All my treatments will be on Tuesday afternoons. The good news about this schedule is that it allows us to avoid the bulk of the commuter traffic in and out of the city. We can easily do day trips. One cool thing I discovered is that within MyChart appointments, I can click on “Add to Calendar” and the appointments download to my computer/iPad/iPhone calendar. It felt like a gift to find something that makes navigating through my upside down life a little easier.
Em calls from her personal phone on New Year’s Eve to let me know that all the appointments are scheduled. Wow! She also lets me know that my triple-negative diagnosis has been confirmed. Chemo is my only treatment option, other than surgery.
It’s pretty much a given that I’m going to lose my hair. I imagine myself having clumps of hair fall out in my hand and clog the drain of the shower. I find myself thinking, “I’m going to be bald in 2019.” Shit. But then I think, will all my hair fall out…eyebrows, eyelashes, body hair, chin whiskers? Chin whiskers. There just might be a little bit of sunshine in the darkness of this treatment. When I had chemo in 1999, I wasn’t supposed to lose any hair. It was considered a mild form of chemo. But, my hair did fall out. Not all of my hair, but a lot of my hair. It was weird. People would ask me if I had lost any of my hair, and I would reply, “No, I have it at home in baggie.”
Happy New Year.
“A bird doesn’t sing because it has an answer, it sings because it has a song.” —Maya Angelou