Tuesday, March 12, 2019. My trip to San Francisco for treatment was pretty routine, except for one thing. Since my only appointment was for a chemo treatment, my dear friend Katie drove me, and Steve got a much needed, if somewhat reluctant, reprieve. It was great spending the day with Katie and giving her the opportunity to see what my weekly routine is like at UCSF. I think she was pretty impressed by it all. And I have to give her double-kudos for going with me when they did my blood draw, rather than sit in the waiting area. It is pretty creepy since the draw is done through my port. Once the blood draw is done an access line is left in place for the chemo infusion. It doesn’t hurt at all because I put the lidocaine cream on an hour or so beforehand.
On those Tuesdays where I only have a chemo scheduled, a nurse from the infusion team takes vitals which includes blood pressure, oxygen level, temperature, pulse, respiration and weight. My vitals were excellent this week, and I had even gained two pounds since my last infusion. That made me super happy.
Once the vitals and blood draw are done, we wait to find out the results. If the blood tests show that my immune system, my white blood cell count, or my platelets are below normal, they might refuse to give me chemo at all. So far that has not happened, with the exception of not getting the Carboplatin the one week my white cells were below normal.
Waiting for the blood test results always makes me nervous. After all, it would be pretty shitty to drive 3 hours for a chemo treatment and then find out your immune system is too compromised to get it. Thanks to the UCSF app MyChart, I have instant access to my test results as soon as they are completed and posted. I even get a text and/or email letting me know that there are new test results in MyChart.
Through this app, you can also digitally check-in for appointments, see all your upcoming and past appointments (which includes doctor’s notes and vitals). You can message any of your UCSF care providers with questions about prescriptions, test results, follow-up visits, referral requests and other non-urgent matters (even though I’ve found it to be the fastest way to communicate and get responses). Plus, you have access to a list of your current medications, and you can request refills. It’s really a great app.
Saturday, March 16, 2019. Here I am with just three more chemo treatments to go. Three. It’s seems like such a small number in the big picture. But through my eyes, and my brain, and my soul it feels COLOSSAL. OVERWHELMING. DAUNTING. I find myself wondering if I really can do three more treatments. The fatigue, as expected, is worse each week. What had become my typical Friday of overall weakness, compromised taste buds, the threat of mouth sores, lack of appetite, dripping and blood-clotted nose, and nagging nausea now makes itself known around mid-day on Thursday and starts to ease up on Saturday afternoon.
It’s hard to look in the mirror when I shower because I am a rack of bones, and I have very little body hair ANYWHERE. I look tired and sickly. And I have chemo brain. I’m super forgetful, about everything. Sometimes it’s funny how I mix up words, and Steve and I will laugh about it. In reality, it makes me sad that the chemo isn’t smart enough to just attack the cancer cells and leave the healthy cells alone.
But then I kick myself in the pants and say to myself, you are almost there. And, I see Dr. Ewing on Friday, so I 100% expect to have a surgery date on the books after our meeting. That will be HUGE for me. My expectation is that the surgery will be about a month after my last infusion on April 2.
So, that’s where I’m at. Living in this surreal world. Trying to keep my head in a good space. Trying not to feel sorry for myself. Always thankful for my wonderful and supportive friends and family, my courageous and loving husband, and the sun shining on my face sitting on the front deck of this paradise I have the privilege to call my home.
It is in the shelter of each other that people live. —Irish Proverb