Drum Circle

Here I am, back at CTCA for a quick over-night visit to get my lupron booster (and a massage, of course). Sister-in-law Amber came to visit me at the cancer center tonight and we were invited to join a "healing drum circle". 8 of us sat around a fire ring and drummed the hour away, along with Native American traditions and stories. "Vibration", our facilitator said, "is in everything. Vibration is how we hear, how we see, how we see different colors. The vibration of the mother's heart is a baby's first lessons in love." Tonight, we used vibration for healing. As we grounded ourselves to mother earth, we were reminded that through the earth we are at all times connected to our loved ones, were ever they are and we are connected to that sphere that gives us life. Later we spent a moment visualizing our "intent" (our current desires) as a sphere of light, that expanded to fill the whole universe and that we then welcomed into our hearts. It was an uplifting and delightful hour. I continually love to discover the connectedness we humans have to each other and the universal feelings we have to seek after love and peace and healing. I love discovering new ways to create those connections to others and to embrace those experiences of light.

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Tuesday 3:00am

3 nights of insomnia in a row! Exhausting. I need a vacation.

Thursday 12:30pm

Lunch at the cancer center, including beet salad and non-creamer cauliflower soup. So tasty. So healthy. And so not prepared by me. Mmmm.

Thursday 7:00pm

The cancer center has a putting green, horseshoes, shuffle board and lounge chairs. Not to mention the $2 organic meals. Oh and the massage I got today. And it's mostly paid by insurance! I'm feeling way too good to be a cancer patient.

Thursday 9:30pm

Check out all the wires I got to sleep with. And this is before the tubes under my nose. Amazing anyone sleeps at all in these studies!

Friday 8:00am

I had a good "typical" sleep last night - no insomnia, but lots of wake ups - so hopefully useful.

In other words, my brief stay over in AZ was actually relaxing and fun! The sleep study turned up that I have restless leg syndrome (or something like it) and that an iron supplement might do the trick. Fingers crossed that makes a difference! Next visit to AZ in 6 weeks.

CTCA

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.

Scan Results

For anyone anxious to hear the results... here goes. You can probably tell by the delay in writing that it is not awesome. Things are still inconclusive. Everything is still very active. This could still either mean that my bones are in a healing mode, or that the cancer is spreading. Uncertain. The only certain thing (knock on wood) is that the cancer has not spread to any other organs (phew!). My doctor wants to be practical and treat this is as if the cancer is spreading. This is very frustrating. I am feeling so much better than I did 10 months ago. I feel like I'm healing! But the exams don't necessarily confirm that, my back pain is still ongoing and cancer is so elusive that you can't feel it spreading. I am continuing to hold to my faith that healing is coming for me, even if it means more chemo or radiation to get there.

I guess we're heading in to double overtime here. The teams are getting pretty exhausted. It is daunting, but I am still holding (with lots of ups and downs). I am learning a lot (lot lot lot) about coping with fear, anxiety, sorrow and dark times and feelings. I will definitely have to share those concepts in another blog post. But I still ask for prayers and thoughts sent my way - because knowing that I have a cheering section is one of my most valuable coping mechanisms.

"Man! Cancer, huh?"

My big scan result is tomorrow. This past week, waiting for my doctor's report, I have been crazy emotional. I've pretty much cried everyday, sometimes for hours. For a non-crier, that's pretty bad. The weight of cancer has definitely gripped me during this last round. I think it's because I haven't shown definitive improvement yet, and I feel like if I don't show improvement by this point then I'm facing another round of even harsher chemo and my life expectancy is much shorter. And the thing is, even the "good" news isn't really "good". Yes, I like to fantasize that the doctor will tell me that every droplet of cancer is gone, but in reality that just doesn't happen. Even if it appears gone, you still have to be tested every 6 months to see if it's flared up again. So even the best news would be, "Things are looking good enough to wait 3 to 6 more months before we put you through this torture again."

I have been shocked and even appalled at how heavy and painful the fear and sadness is. It's ironic that almost one year ago I spoke at my mom's funeral and said something like, "For those of you who have had to face talking to a doctor about a terminal illness, you know how paralyzing that can be." I had no idea then that I was talking to my future self! And I can't believe how very very little I understood of my mom's experience while she was going through it. I mean, this is absolutely awful. I know she told me that, and I tried to understand by relating it to pregnancy - the hardest experience I'd yet been through. But actually wrestling with the end of your life and trying to be ok with that?!? So hard! And she endured under that for 14 years. I now understand my mom in ways I didn't fathom a year ago and she's not even around to relate to.

I have thought, of course, about our eventual reunion in heaven and what we will say. After hugging and rejoicing, very few words will need to be exchanged.

I'll pull back from our hug and look at her and say, "Man! Cancer, huh?"

She'll nod and say, "I know, right?!"

Then we'll both laugh until tears roll down our cheeks.

New Life Philosophy

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!”
― Hunter S. Thompson

I stumbled across this quote last week, repeated by a 5-time cancer survivor. Recently I have been getting pretty high strung about all the things on my body that are breaking. It can become a bad habit to think that every itch and sneeze is a sign that the cancer is spreading.

A few of my recent panic attacks:
- one night my arm went numb, especially in my last two fingers. Does this mean I have a blood clot? Or a tumor in my neck? Turns out it is a common nerve pinch corrected with b6 and not leaning on your elbows.
- recently I've had strange episodes of feeling light headed. Is it a brain tumor? No. It's just dry eyes exacerbated by dry contact lenses, corrected with eye drops.

I keep feeling like I am a lit candle that is desperately trying to catch my melting wax and reform it to my perfect original shape. Stressing about each little body failure is incredibly draining. Especially when many of them can be dealt with and have nothing to do with cancer.

Well I refuse to let my life be dictated by fear. I'd rather celebrate my melting body as a sign that I am ALIVE! God gave me this body to enjoy. Not to abuse, but not expecting me to preserve it either. He intends to give me a new (or a perfectly refurbished) body in the life to come. It's OK that this one doesn't last forever - it wasn't meant to.

So I'm going to try an experiment to improve my thought pattern. Every time I have a scary cancer thought, I'm going to add to it 2 (or more) thoughts about the wonderful things my body can still do and enjoy. When I feel a random pain that causes worry, I'm also going to appreciate that I still have that body part and that I can still feel it and take a moment to notice all the things that body part does for me.

Who wants to get to the grave in an unused body? Not me! Body malfunctions are frustrating, but also a great opportunity to appreciate all the living I have done and that I am still ALIVE.

Breakfast-In-Bed on Mother's Day

I posted this on Facebook on Mother's Day, but I'll re-post it here.

My cute little family greeted me as I awoke this morning with hugs and cuddles. When I commented to Anthony that my eating habits prevent me from having the standard breakfast-in-bed of bacon, eggs and pancakes, my cute son immediately disappeared and returned with a breakfast in bed that I could eat - pistachios and a banana (and bread, which I had to pass on). Such a loving act from such a wonderful son!

By the way, noticing my awesome morning hair (it's usually far crazier), makes me remember to share this story. I keep touting that I have had no noticeable hair loss from chemo. A few weeks ago I told Anthony that the chemo had strangely turned my eyebrows blond. Then a few days ago I finally realized that they're not blond, they're non-existent! My eyebrows are so thin that they look blond and my eyelashes are so thin I haven't bothered wearing mascara for a couple of months. It just took me a while to realize that it was hair loss from the chemo. This makes me wonder how crazy my morning hair will be when my thick hair returns with all those short little new shoots coming in! I've read that regrowth can start 1-3 months after chemo ends. As for the short do, kid A wants me to grow it long again, but I like the convenience of short hair and Anthony likes the look, so I think it will stay.

Last news bit. I've been on hormone therapy for 2 weeks now. What is hormone therapy? It's called Tamoxifen and it's a small white pill I take once a day. My understanding is that it doesn't prevent my body from producing estrogen, but rather inhibits certain cells (like cancer) from absorbing estrogen, while allowing other cells (like the heart) to still get it. So far my biggest complaint is upset stomach and a surge of insomnia. I'm not sure if I've had mild hot-flashes yet, or if I'm just not loving the warm weather we're getting now. I'm also not sure if I'm feeling moodier, or if it's just due to some missed sleep. But I have definitely embraced this new therapy. As I continue to have some back/bone/muscle pains, it gives me comfort to know that I am doing something to combat the cancer and hopefully the pains are just soreness from my workouts.

Advice request: Anyone ever been treated for diastasis? What are the pros/cons/alternatives to surgery?