Patient Advocacy, I want it.

Well. I hit my limit today.
I'm calling to talk with a patient advocate consultant at the hospital I'm going to in the morning.
I'm so frustrated with the situation I'm in...
Initially at the time I agreed to have the biopsy on my adrenal gland, I specially clarified that there a DNA analysis/molecular testing would be done. I received the answer "yes" and an explanation on how good the hospital's molecular testing was vs. any other hospitals' molecular tests...

I got the biopsy results last week but couldn't read them because the access is "granted" but not viewable for me online, and I'm pretty tech savvy, if I could see them, I would. The doctor finally copy/pasted the results into the text of an email today. I immediately saw that they didn't do the genetic testing that I was told would occur with my biopsy sample.

I asked what happened and had this answer:
"The reason for not obtaining them at the time of biopsy is because we didn't know what the primary source of the tumor was. 
It would likely be reasonable to ask for the samples collected to be evaluated further for molecular testing. You're a young patient, and if there are any mutations within your tumor, knowing that may help direct therapy. The decision to order molecular testing would need to be made by ...Dr. and ....Dr."

I have an appointment this Thursday but am concerned that it will be pointless because the oncologist will want to talk about chemo and I won't unless there's precise analysis of the tumor. I'm not going to want to do chemo without knowing it is actually worth it...

I also can't go ahead with any other research for treatments without that molecular testing/DNA analysis. Every place I called asked for those tests.

Exciting to have a new, reliable car.
Another Prius- my favorite color!

So frustrated.
I wrote to the oncologist I'm seeing on Thursday with my frustrations and a request for molecular testing, shall see.

Feel like I'm getting the run around. Being bounced from doctor to doctor isn't all that wonderful. I'm sure they all have the best of intentions but I'm noticing things slipping and not being done... and having to call to beg for appointments instead of having referrals isn't fantastic either... Hopefully a patient advocate might help me. Shall see.






Besides that frustration, I've been enjoying life... having work meetings, getting a new car (purchased with my last paycheck from my previous job/loan- hooray to learning how a lease isn't a terrible thing...), and enjoying time with family and friends.
Energy is there. Ebbs and flows and I'm just riding the waves and enjoying the days...
Went to a movie with my mom and sister today called "The Prophet" and found it quite powerful. It was animated... gorgeous. Wish I could have had a remote control and hit pause after certain points because it had so many deep, thoughtful moments and then quickly moved to another deep, thoughtful moment without time to digest the previous one. It also made me quite sleepy.

So proud of my sister and how she pursues opportunities to
share her talent with the world!!

Also had the chance to meet a few people I'll be working with this year... feel like this are progressing in the work setting, happy about the future with that. Excited...
Shall see how things go otherwise. I'm excited about meeting with family this week and going on a few adventures as well. Had a great trip to the beach this past week, was restorative. Also loved going to a SMART (Smart Making a Reader Today) event at Powells books and seeing fantastic author and illustrator friends, they inspire me so... Plus seeing my incredibly talented sister perform in a musical was fantastic.

Loved this beach- Hug Point... Oregon Coast.

I'm appreciating the nutritional program I'm on. I'm happy to have the time to focus on helping my immune system get stronger. I also am relieved to have those essential oils because with the air quality being a little poor recently with terrible forest fires in Oregon/Washington, the oils help me stop coughing, a little...

Thanks for journeying with me!

Patiently waiting

Juicing ginger time...

I'm tenatively going out and about every day, not up to 10,000 steps but over 6000 most days... a relief to see an uptick. Allergies are starting to annoy me- coughing is back. Shall see.
Tried out a juicer I bought at Goodwill for $10, one of those juicers that I find ridiculously expensive in the stores... but $10 was worth the risk. It worked beautifully, hooray! Now drinking green juice again...
Hair is growing in, curls are showing themselves again. Hip hooray.
Celebrated 15 year wedding anniversary with my husband and we chilled out- dinner and a movie, quality time treasured. Especially without a medical procedure on that day.








Got thru the biopsy, no problem. Was honestly shocked about where they put the needle into my body, I really was confused about where the tumor was located, they went in through my back in my upper right quadrant... No bleeding or issues and I did have an anesthetic that helped me relax and pain medication as well... meh. Got thru it, drank loads of water to clear out of my system... still am.

So that's my right adrenal gland with a needle going into it... Hmm.
Not sure I actually needed to see this, but I did ask.

I've subscribed to many interesting online healthy choice resources. One is Dr. Greger who talks sensibly about how to help your body by looking at food as medicine and making healthy choices... especially fascinating research and facts shared... Appreciated watching this presentation:

I've watched this person talk about health options before, appreciated his talk about fixing your gut... important topic since it also impacts your immune system.

He has a healthy salad that seems quite appealing and possible to make, not so sure about how often he suggests eating it but I agree with many items in it...
http://www.chrisbeatcancer.com/the-giant-cancer-fighting-salad/

Not so patiently waiting until Monday. I'll call first thing in the morning to find out biopsy results... Figure that's a long enough wait. I can be patient but I'm no longer going to be wondering too long.
Loving my stamina. Sure, the hot days drain me but a day like Oregon had Saturday was wonderful... a little hot but that cool breeze helped.
Loved walking while my kiddo confidently rode his bike to the park... 30 minute walk didn't tire me out at all... I miss Hong Kong for the walking aspect and buses, it is odd to drive everywhere now, sure, part of life but still odd after three years of healthy walking to grocery stores, to theaters to markets, etc...
Think I'm building up stamina to walk up the street to our nearby market/shopping area- there's a library there!! It shouldn't be too long of a walk, just quite hilly... shall see now that weather might be cooling down a little bit.
Feeling a little distracted by work projects presently... will plug away at them now.

Thanks for journeying with me.
Happy day to all!

Being Patient and appreciating life...

Happy to see a little curve to my hair growing out.

Taking deep breaths and being patient. Yup. In the waiting zone again.

Here's to never having to deal
with urine collection again,
I hope.

Turned in a huge jug of urine yesterday to the lab at the hospital so they could make sure I don't have a tumor  in my adrenal gland that can't be biopsied... Waiting to find out results and be scheduled for the biopsy.
Collecting urine in a jug isn't the most pleasant experience. I could do without that for the rest of my life. Collecting it for 24 hours was a little annoying but it was quick and it is done. Wish all medical procedures and things could be done in 24 hours.
I am patiently trying to deal with insurance as well. Juggling between two companies as I switch Sept. 1st to my school district's insurance and stop paying out of pocket.
Feel like we've been bleeding money this past month but we expected it would be an expensive transition. Thank goodness we've been propped up by family and friends along the way.
Grateful to have a comfortable home. Know how lucky I am with this.
Grateful my husband is getting interviews. Let the right job reveal itself.

My poor sweetheart, heartbroken each time I
put this on but I know that it helps, especially at
night...

Grateful my kiddo is healthy and dealing pretty well with this huge transition back to Oregon. Let him find good friends when school begins...
Very upset about our sweet Dulcie dog. She went to the vet the other day because we were concerned with how she was chewing on a new sore on her back right leg. Found out it was sarcoma... and a surgery wouldn't help. :( Damn cancer. Appreciating every minute we have with our sweetheart. She's such an incredibly beautiful good dog.

I'm excited about work.

She's finding comfortable places to
lie down in our home... Love how at
peace she is...

I'm hopeful.
Shall see how everything goes.
Feeling stronger.
Enjoying hair growing out- it is just starting to show that hint of a curl. Noone should have to lose their hair, especially twice. Feel like my identity is still with me but one of my main distinguishing features has been temporarily eliminated... Don't get me wrong, I love having hair again... just dreading finding out what "targeted therapy" treatment options my doctors will advise after the biopsy and such is complete.
Getting along.
Appreciating life.
Missing qigong so much.
Going to try going to a class on Monday next week, shall see.
Grateful to my friends and family for being the initiators of meet ups, etc... I'm not that busy but appreciate not being the only one reaching out to others...
Thanks for journeying with me. Appreciating the energy I have... and time I have this month to relax...