What a difference a day makes

Monday, March 25, 2019. After our appointment with Dr. Ewing and her Nurse Practitioner Shelly on Friday, Steve and I were in a state of shock for a couple days. But on Sunday, I reread my MRI results from February 26, 2019 and did not see anything in the report that said the tumor between my major and minor pectoralis muscles was in the tissue. It said, “Interval decrease in size and degree of enhancement of the right chest wall mass located between the pectoralis major and minor muscles.” Between.

I decided to write Dr. Ewing a letter to get some clarity and to make sure we were on the same page AND to make sure she had thoroughly reviewed my chart since she didn’t immediately recall that my cancer was triple negative not estrogen positive. I reminded her that she had told me in November she would do surgery with or without chemo. In the letter I quoted the latest MRI report recommendations and reassured her that I still had confidence in her as my surgeon, and trusted her medical opinions and recommendations. I went on to say that I simply wanted to confirm that further chemo would be required before surgery would be considered or scheduled.

I logged into MyChart and messaged both Dr. Ewing and her Nurse Practitioner and attached the letter.

Late Monday evening Nurse Shelly called to let me know that Dr. Ewing had received my letter, and how much they appreciated me sharing my concerns. I gave Shelly a brief overview of my November 30 visit with Dr. Ewing since she was not there. Shelly said because of the location of the tumor and how delicate the surgery would be, that Dr. Ewing now felt it needed to be smaller or dissolved before she would do the surgery, and therefore would reach out to Dr. Rugo with her concerns. Shelly also said that Dr. Ewing was taking my case to the UCSF Tumor Board on April 8, that Dr. Rugo and her team would be present and they would determine the best course of action for my continued treatment. She also wanted to schedule another MRI in about 2 months. The call ended with the usual courtesies…me thanking her for her time and the call, her telling me I was courageous. Blah. Blah. Blah.

I did appreciate the call, but I didn’t feel all that much better. In my heart, I just wanted to know what Dr. Rugo would have to say.

Tuesday, March 26, 2019. The appointment with Dr. Rugo was vastly different than the one I had with Dr. Ewing. Dr. Rugo let me know that she had not heard a word from Dr. Ewing, she had not been informed about my case going to the Tumor Board, and she was surprised that Dr. Ewing was now reluctant to do surgery after I had completed the 12 chemo treatments. She immediately started texting Dr. Ewing to try to get some answers. She examined me and measured the tumors, and we both agreed they had gotten smaller in the three weeks since my last visit. She recommended that rather than 12 infusions that I do 14 and perhaps the tumors would dissolve by then. She also wanted me to have another MRI on April 15 (the day before my last treatment). She also let Steve and I know that she would be out of town on April 8, so would not be at the Tumor Board. We let her know that we did not want my case presented if she was not there. We all agreed it would be best if it went to the Tumor Board on April 22, so the latest MRI report would be available for review. I asked if she thought I should consider getting a second opinion from another surgeon. She told me that all of the breast cancer surgeons sit on the tumor board, so it wouldn’t be necessary to make an appointment with someone else for a second opinion. Dr. Rugo reminded me that my tumors are localized. They have not metastasized to any other organs, blood, bones, or anywhere else. She reassured me I had a long life ahead. That there was no reason we could not beat this. She gave me a big hug before she left. Steve and I felt a great sense of relief afterward.

By the time we headed up to the fifth floor for my 130p infusion, it was almost 430p. For the second week in a row my nurse was Miesha—a beautiful, young lady with a radiant smile. They type of person who has the gift of making you feel beautiful. We greeted each other with a warm hug. It was around 645p by the time we left and we pulled in our driveway at 915p. Another super-long, exhausting but hopeful day.

I need your help. My tumors need to dissolve or be nearly dissolved by April 15 (the day of my MRI). I’m asking you to envision my main tumor melting away. Imagine this 1 x 1 centimeter tumor, lying between my minor and major pectoralis muscles, dissolving (image from The Hughes Foundation, Inc. © 2017). Chest-1Disappearing. If you would envision this little tumor melting away once a day, every day between now and April 15, I believe it will happen. Our collective power will help the chemo destroy this stubborn yet vulnerable tumor. I believe in the power of numbers. That the more of us who are asking, the better my chances of it actually happening. I am making it a part of a daily meditation. For you it might be part of your daily prayers. I’m just asking you to be specific about what you pray for, meditate on, or ask the universe to provide. Together we will destroy what remains, and I can get my life back.

The most common way people give up their power is by thinking they don’t have any. —Alice Walker

A set back

Sunday, March 24, 2019. 

I had my meeting with Dr. Ewing on Friday. After looking at my latest MRI, Dr. Ewing is not willing to schedule surgery until the tumor in my muscle (yes, she indicated it’s in the muscle not simply between) has shrunk even more. She implied that if the two infusions remaining do not do it, I will need additional chemo treatments. So I’m sad to say that I likely won’t be done with chemo on April 2nd, it could be as late as April 30 or beyond. I’ll know more after my appointment with Dr. Rugo on Tuesday.

Steve and I were both taken aback by her assessment, and are still trying to process everything. We’ve been crying a lot.

Wish I had better news.

The knowledge that you have emerged wiser and stronger from setbacks means that you are, ever after, secure in your ability to survive. —J.K. Rowling

Two pounds

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.

Lana's bald head. March 16, 2019It’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