Sep 23, 2013

I Love A Good Pun

After a billion phone calls, and emails, a few dialed-in dates, then a few fall-throughs, we have solidified all four UCLA appointments. Phew! Now we can book our flights and figure out where we're staying. Dan insists on taking off work to join me, which is going to be really nice. Just holding his hand lowers my stress levels. 

Also, today, my aunt Anne took me to a new dermatologist. (I like to shop around for doctors as you well know.) I really liked this woman, but of course she found five new moles that she wanted to biopsy. (I politely declined.) I don't know how to handle this new world of skinning people alive. Is it necessary?

Truthfully, I can't take on another area of my life that demands so much attention, it's frying my brain. I think I'm going to table the whole "mole" situation for a bit.

When I got home from the dermatologist, and spent some time with my badass aunt, I noticed that my blood results were back. Things look mostly good, except for high serum phosphorus and low serum alkaline phosphatase. Oh, and of course a maddingly high cholesterol level. What the heck?!? Apparently that whole low carb thing didn't make me immune as the experts say. Bollocks. 

I'll be talking to the doctors over the phone in the morning and they'll explain all the bloody results. For now I will rest, which will be easy to do after my food coma. I made us my favorite dinner tonight, pure comfort food...


Shirataki (yam - no carb) noodles
Chicken breast 
Coconut milk (full fat)
Turmeric
Chili powder
Granada curry
Fresh cracked pepper
Purple onion
Garlic
Broccoli
Cilantro

It's my figgitty fav dinner. Simmer the chicken in the coconut milk with all the spices until the meat is cooked. Remove the chicken breast. Add the broc, gar, and red.o and cook for a few with the noodles. Then dish up, piling on the fresh chopped cilantro to garnish. Piece of chicken if you know what I mean. It's easy, and delicious. Don't skimp on the spices though, that's what I recommend. 

Sep 20, 2013

Unnecessary Surgery/Radiation? No Thanks.

Why oh why does my dog eat weird things then poop all over her bed? WHY!?!? Ugh. Good afternoon. That's the news around our household. Gross.

Thanks for being patient with me. This past week I started a new relationship with a superb nutritionist out of Utah. The company is Nutritional Solutions. They work with cancer patients, specializing in brain cancer. All of their recommendations are based on research, not anecdotal stuff. It's pretty cool.

So, yesterday morning I wandered over to Lab Corp and had several vials of blood drawn for eight different panels. I'll get the results in about a week and I can review it with my new nutritionist to see areas where I'm healthy and perhaps some others that I can work on. I'm really excited about it! Although it's a daily struggle to keep up with life, I feel like I'm slowly getting the best doctors and specialists, creating a great team.

Yesterday, after feeling great from my blood draw - all jacked and pumped (a little Pete Carroll for you) that I was getting things done - I received a phone call from my health insurance, of course they would deny me for the Dopa PET scan. I think Dr L is going to submit more clinicals to prove the necessity of the dopa, therefore convincing my health insurance to cover the scan. If they won't cover the scan I feel like I should do it anyway, and here is a story to prove it. I hope this friend of the blog doesn't mind me sharing her story, but I won't name her, so I hope that covers it.

This woman and her husband have had all the same doctors at UW, the same oncologist, Dr Mrugala, and the same radiation oncologist, Dr Jason Rockhill, as I did. Her husband has been battling a brain tumor and had it resected. Several months after the brain surgery, on a followup MRI there was an area of increased T2 signal/flair, and the doctors at UW wanted him to do another resection, and more radiation (or maybe it was just radiation they wanted) because they said it was tumor growth. Long story short, the wife was terrified and asked for a referral to get a second opinion. After a couple more appointments/discussions with various doctors, they ended up at UCLA with Dr Cloughsey (my new neuro oncologist). Dr Cloughsey scheduled a Dopa Pet scan, and it's a good thing he did because the area of T2 signal/flair was just scar tissue. SCAR TISSUE!!! Apparently scar tissue can form months after surgery and/or radiation as your body heals, and it can continue to grow, mimicking tumor growth. (Fingers crossed for that result after my scans next month!) THAT is the problem with MRI scans, they do not show if the area is tumor, or scar tissue, and doctors are over treating, or mistreating, and who knows how often!?!

Man, if that story doesn't teach us something, I don't know what will. It's just shocking. Please, please, go to the best doctors, go to the facilities that have the best technology, the best machines and up-to-date procedures. That story is incredibly profound, and terrifying, and it shows the lack of knowledge and ambiguity of these MRIs. An unnecessary brain surgery? Unnecessary radiation? Holy crap. Holy. Crap.

As a side note of other happenings in our life, I had three moles removed on my chest last week - left breast, sternum, and right areola. I received the pathology results on either this Tuesday or Wednesday, I can't remember which, and they came back, respectively, moderate dysplasia, moderate dysplasia, and severe dysplasia.What is the deal!?!? I have the most resentful, disagreeable chest. I don't know what the deal is, I've never been a topless bather. I don't know why the moles on my chest continue to try and turn into cancer. Sometimes it's really hard to keep up with my health, especially when there are so many different areas of my life that have to be monitored. The dermatologist wants to remove more of the tissue on and under my right areola. What are they going to do? Remove my nipple, dig out the underneath, then sew my nipple back on? Or would they toss out my nipple and sew on a synthetic one? I can't see how they would dig out everything under and around the area and leave my nipple which is immediately, directly, right there. EEEK! Remember a year and a half (or so) ago when they removed a massive portion of my right breast because of a different mole? It had several stitches. How in the world will they do that with the area around my nipple? Sorry if this is too blunt for you, or awkward to read, but I often look at my body as a specimen. It's just body parts.

Second side note, and completely off topic (Phew!)...our wisteria is blooming! Dan and I used to have wisteria in Wenatchee but it never bloomed. This is so exciting! And we can see it from our bedroom window. It's a soothing view. :) It's little things like happy plants that aren't lost on me. In fact, they literally make my day, keeping me smiling, and so very grateful to be here in this life, on this planet, with all of you peeps. I love it that life really is about the little things. It makes everything feel so simple. So doable.



*Writing this post took just under 6 hours. Boy how life has changed. It's much more challenging. But I'm doing it. I'm making it. Little by little. :)