Being fed up with these ambiguous cancer results, I decided to seek out a second opinion. I called Cancer Treatment Centers of America and a week later found myself standing on the doorstep of their facility in Phoenix Arizona. I had multiple phone contact with them before arriving and was able to request visits with several different types of doctors. That's the set up there. Their goal is to treat the whole person and do it all in one place and with communication and sharing between all the doctors. It is an exciting concept for the medical industry and, I think, a forerunner for how most medical practices will run in the future.
Anthony and I arrived together for this week long experience. We both had this weird sense of excitement about it. We walked in to an inviting lobby area that looked like a hotel, rather than a hospital. Off to the right was a cafeteria that served organic food grown in their own extensive garden, and a juice bar that served everything from Starbucks coffee to Super Green shakes. The main hallway was wide and carpeted, the walls were painted with warm desert hues, couches and plants decked the center aisle. All the employees greeted us cheerfully. Anthony's immediate assessment was, "This is like Disneyland for cancer people!" Although I was also impressed, I had to reign him in a little and remind him, "Yeah, but we still have cancer."
From Monday through Thursday I had a busy schedule. Let's see, I met with... intake doctors and nurses, a naturalpath doctor, a nutritionist, a radiation oncologist, a surgeon, a medical oncologist, a mind-body therapist, a chaplain, a gynecologist, a gastroenterologist and had a brain MRI done. I unfortunately missed out on the massage therapist, the chiropractor and the sleep clinic, but hope to catch those in the future.
For the most part, the doctors all work in an area called The Clinic which looks like a standard doctor's office except that the labyrinth of rooms is fairly extensive. Most of the appointments were back to back, so I chilled in the same room all day and the doctors came to me!
In regards to the cancer, first off, no brain tumors. Yay! I've been getting such bad news from these stupid scans I was quite nervous about getting the results of that brain MRI. As I nervously waited in the room for a doctor to arrive with the results, I couldn't help imagining my mom waiting in the room with us. I commented to Anthony that I felt like we should bust out the skip-bo cards to pass the time, since that's how she passed the time with us years ago while I was in labor with my second baby. I also thought about when my mom was pregnant with me she craved cottage cheese and I have often quipped that my brain was formed from the stuff. That day I joked that there was no way they were going to find a brain tumor because nothing can penetrate cottage cheese!
After meeting with the cancer doctors, they assessed that I don't need radiation since my pain is rather minimal. I also don't need surgery at this time. But they felt pretty confident that my cancer is
not responding to treatment. The oncologist said that the bones
are the most difficult organ to assess cancer in, but there was enough evidence to indicate that the Tamoxifen wasn't doing the job. In fact, he said that he probably would have started with aromatase inhibitors from the beginning, not even doing any chemo. I don't know if chemo was the right way to go or not, but I did like the confidence he had that aromatase inhibitors would beat this thing. The new treatment plan is to put me in to menopause using lupron shots every 3 months and then to take daily anastrozole to suppress any stray estrogen and progesterone. This is actually the same plan my original doctor wanted to change to, which further adds to my confidence that it's the right plan.
As for menopause, who knew I'd beat all my friends to it by 15 years? I need to get some more 50 year old friends who can give me advice on this new milestone.
Overall our experience at CTCA was positive. We liked most of the employees we worked with and felt like the oncologist was incredibly knowledgeable and confident. I loved having easy access to all those other disciplines too. I felt like I got excellent care from truly caring people. Plus that cafeteria food was
delicious! However, it didn't meet all my dreams. I was hoping for a more warm-fuzzy oncologist and a different approach from the mind-body therapist. I was also turned off by one nurse who tried to educate me on how to cope with menopause and ended up just discouraging me that I was going to get fat, loose my libido, suffer unendingly from hot flashes, oh, and probably die within 5 years (hate is probably too strong of a word, so let's just say that I severely disliked that lady).
All that said, will we continue there? That's the current plan.
One of my favorite take away moments from the experience came in meeting with one of the chaplains that works there. We talked religion and cancer. We had a nice hour-long talk, but it ended up being one sentence right in the middle that hit me with personal inspiration.
I talked with her about my struggle to try to accept death and to be ok with it. I explained to her how my mom found great peace in allowing the timing of her death to be in the Lord's hands, but that try as I might I just can't get there. I don't want to die, but I feel like there is a lot of pressure on me to accept the inevitable. She responded emphatically that I have TIME. I am young, I have young children, and of course I don't want to die. She told me about one patient/friend of hers that had breast cancer with mets to her bones, liver and brain. 4 years later this lady is rarely in the center, is living a full life and is raising her teenage sons. I love that story.
Note: If you want to give cancer patients hope,
don't tell them about someone who died, even if they survived 10 years, because it inevitably puts a time limit on their life-span. Instead, tell about someone who is still living and still fighting, even if it's only been 4 years so far, because then the ending remains unwritten for all of us. The only exception would be if it was someone very close to you in which case you should emphasize the emotional understanding and not the time-span. Besides, stats are garbage. My mother
doubled her supposed life-expectancy. If I inherited her cancer genes, surely I inherited her math genes too!
After hearing the chaplain's exclamation, I still can't help recognizing that technically my life-span stats are not super long, but I also recognize that what she was saying was true. I still have time. The Lord isn't expecting me to be able to trust his timing overnight. It's challenging. He's ok with me needing some time to get there. In fact, I even felt spiritually encouraged to take the pressure off myself to hurry on that point. My mom didn't find her peace until several years (maybe 8?) into her cancer fight and even then it came and went a bit. It is important for me to relax my panic-grip on the life/death question, and it is important for me to continue to seek my God and allow his messages for me to flow into my life as they come. I may be struggling to trust his timing on my death, but I do trust his ability to teach me (this experience case in point). Self, take a deep breath. I will get there when I get there.
