Sandra has always been one of my wisest friends. As she left, she gave me some parting advice, "Recuerda disfrutar cada dia" (Remember to enjoy every day). How timely that advice has been for this month! Here's are a few examples of "disfrutando cada dia" this month:
Bates Nut Farm with dear friend Robin and our Girls:
Festive Day at Disneyland with The Fam
Teaching Fall Music in Carleigh's Classroom
The day that Sandra left to fly back home to El Salvador on October 5th, I went to my routine appointment expecting it to be well- routine. I expected it to be business as usual. He would ask me how my treatment was going, and we'd talk about possible next steps. Unfortunately, this wasn't how the meeting went at all.
He mentioned that the genetic test results he had sent for had come back and that my tumor had some mutations which may make me eligible for clinical trials. When I asked him when these trials would take place and how I could qualify for them, he just said he couldn't give me any information.
Then he said, "Well, I want to know how I can support you, because it doesn't seem like you are handling things very well."
Because I had only exchanged pleasantries with him during this meeting, I didn't really know what to say to that, so I just said that I would like him to help me formulate an action plan.
"That's just it; you want to have a set plan, and you are only going to face more uncertainty and disappointment, more planning, and un-planning" he said. And then:
"The best thing that you could do for yourself now is seek psychological help so you can wrap your head around this."
Huh?
We asked him about another surgery, as we had talked about when he told me about the recurrence, and then he said that I'd already missed my best shot at a cure and that a surgery would only be a useless invasive process and the cancer would come back anyway.
I then asked him what the aim of the current treatment was, and he said it was just to keep the cancer "at bay," and that history proved that I only had at most 3 years to live.
I didn't ask for this prognosis, but he gave it unsolicited.
I responded by saying that my surgeon had once mentioned 5 years (which I was never buying) and to that he said,
"The surgeon has a skewed perspective. I am only telling you this because I care, and anyone who tells you otherwise either doesn't have the whole picture or they aren't being honest with you."
When I then tried to ask him what the aim of clinical trials would be, he held up his hand condescendingly and said, "That is the 4th time you have asked me the same question, which further convinces me that you need psychological help."
Carl and I looked at each other in shock. This was clearly a side of this doctor we had never seen. We knew the meeting was coming to an abrupt end, so Carl said, "We still want you to present us at tumor board like you said you would earlier," to which he responded with:
"If you want to get cut on, then get cut on," then promptly exited the room.
So, I am not sure if he was angry when I pushed back a few weeks earlier about receiving chemo despite the low platelets, if he is having a major disagreement with my surgeon, if he has an issue with professional jealousy, or if he is just plain arrogant.
One thing that I do know, is that he has no say in how long I have to live. I am reminded of this classic clip from "Ferris Bueller's Day Off." When Ferris impersonates the Sausage King of Chicago at an upscale restaurant and the snooty host threatens to call the police, he says, "If I'm going to get busted, it's not gonna be by a guy like that."
Well, if I am going to have to die an untimely death, it's not going to be on the terms of a guy like that- my now ex-oncologist. So, I broke up with him. Like any break-up, this one was somewhat painful. I thought that he had my back, that he would advocate for my life, but I guess he wanted to weed me out of his over-crowded patient load and essentially said to me, "Your life is not worth fighting for."
Of course I know better, so we met the surgeon the very next day who offered a much more hopeful perspective. He said that although it was unlikely he could cure me, that he could at least prolong my life.
We met with my new oncologist Friday. She said, "As of now, you have one tumor...no one is dying here. You have time to consider your options, and there is a lot we can do." She then immediately gave me several referrals, from a clinical trial specialist at UCLA to an inter-radiologist. Surgery is still a possibility, but less invasive micro-oblation, and radiation are still on the horizon.
Meanwhile, I am attempting to research natural methods of healing such an alkaline, raw foods diet and meditation on my own time, which is difficult to find outside of my standard treatment appointments and just trying to parent my girls and juggle the demands of regular life, outside of my cancer.
Although the appointment with my new oncologist went as positively as it could have gone, I left the doctor's office feeling very drained. As I explained my cancer journey to the new doctor from its beginning, I felt like I was starting all over again, and that I still have so many mountains to climb. In some ways, I feel like I'm back where I started 14 months ago.
It doesn't help that the erbitux immuno-therapy that I am on covers my skin in a blotchy red, itchy rash. I feel less than pretty, to say the least. However, Saturday's LuLa Roe party that was kindly given for me definitely brightened my mood. New clothes always do:
I know I have to take this journey one step and one day at a time, as trying to figure out the big picture is just overwhelming. One of my favorite hymns is "Lead Kindly Light, which says:
Lead, kindly Light, amid th'encircling gloom;
Lead thou me on!
The night is dark, and I am far from home;
Lead thou me on!
Keep thou my feet; I do not ask to see
The distant scene--one step enough for me.
I love Mack Wilberg's arrangement, which was sung by the BYU Men's Chorus in 1996, and is performed often today by the Mormon Tabernacle Choir:
Tomorrow's scans will determine the next steps of my journey, and I can only look towards that vista and not try to view the entire mountain. I have to keep the faith that there will be light "amid th'encircling gloom" of negative oncologists and bleak prognoses. Even if I don't know where tomorrow will take me, I do have control of how I climb this mountain.
