5 appointments, 3 days, sheesh

Gonna miss my kiddo when I go to a conference for the weekend.
Just finished a good book with him and quickly are going to shift
to a new one... Haven't missed a storytime with him in a while... Even
the days when I'm coughing and unable to read much, we still have our
time together...

So. Yesterday I had to go get a PET scan done and I took a sick day since I knew I'd be useless at work before the scan since I had to fast for it.
The scan is still as isolating as it is in Hong Kong. Similar everything. Scans suck a little more now since I don't prefer to lay on my back since pain is ridiculously bad after 5 minutes. Having to lay on my back without taking tylenol? Very worrisome. Got thru it all just fine. I'm good at staying still. (Guess I have a little practice with 3 rounds of radiation!)
While I was isolated for an hour letting the radiation seep thru my body for the PET scan, the nurse pulled a miracle and scheduled a brain MRI a few hours after the PET scan.
I hated that MRI. I don't use the word too often but MRI contrasts suck totally. First I'm in a head cage and have to hold still while things bonk, buzz, whir, and shake all around. For 25 minutes. Then they injected a contrast into my poor overused vein and walked away. Nope. Not happening. Had to hit the panic button so that I could sit up and deal with the nausea side effect from the contrast, yuck. Got over it. They said it happens to those who are lightweight... Yup, that's me presently.  15 minutes more of laying still. Had earplugs and headphones on. Once in a while heard classical music. Hmm. Not so fun. Got thru it.
So I had to get both tests done for the new oncologist I'm seeing next Monday.

Today was interesting.
First I met the gastroenterologist and discussed my swallowing problems with him. Why not just schedule the stinking procedure? I'm not sure. Oh well. Next Thursday or Friday I'll be going thru an hour long procedure where they'll possibly put a stint into my esophagus. There's consequences, of course. It could slide. Go down into my stomach. It will likely make me hurt for 2-3 days as the stint expands. He only wants it in there for 6-8 months. Said it can create problems if it is there longer. Said that I have to sleep at an angle because I could have really bad acid reflux since there's no barrier anymore once the stent is in place.
Found this brochure about what to do after the stent is placed...
https://www.bostonscientific.com/content/dam/bostonscientific/endo/general/gastro-specialty/eso_stent_patient_nutrition.pdf

Next I met with my oncologist. Had good conversations with her. We went over the Foundation I results and she found that there was a immunotherapy drug that my tumor reacted three ways to "genomic alterations detected"... so she got permission from me (of course) and is now applying to get it for me through compassionate care.
The immunotherapy drug is called Temsirolimus.
http://www.torisel.com/how-torisel-works
I know it is normally connected to renal cell carcinoma. It is not on my oncologist's normal radar. She said it was very good that we had the Foundation I testing because it brought to light a drug that has a little promise. It is in a 2nd trial trying out treatment for gynecological cancers/cervical cancer and has shown promise. I'll take that hope.
https://clinicaltrials.gov/ct2/show/NCT01026792
Shall see how long compassionate use application takes. I'm still seeing the new oncologist on Monday and also another oncologist on Thursday.
We also discussed other things, liquid versions of medicine, especially tylenol... Unfortunately the Tamoxifen I take is liquid form with the flavor of licorice added in, YUCK. I HATE black licorice. I HATE the seeds as well... So I'll crush that pill.
Handed her my paper work for my Advance Directive... it came in the last Hong Kong shipping package... Good to get it sorted out and make sure the hospital knows my wishes.
Grateful a friend is helping me with paperwork and such... I'm in the process of gathering what I've already got... wills, etc.

Eating is such an issue.
Had to fast yesterday for the PET scan and afterwards met my mom and had a delicious sandwich. Unfortunately around 20 minutes into my slow eating process things got... blocked up and I couldn't figure out what to do. Had to lie down at the restaurant in a booth. Blech. Took around 25 minutes or so to recover but felt like crap and barely had any interest in dinner. Needless to say when I weighed in today I'm down to 119.5. :( Very unhappy about that but will continue to try. I'm drinking protein shakes thanks to my husband making them for me in the mornings. I'm slowly going about the days. Barely able to drink a mug of warm lemon water first thing in the morning. So odd to adjust to. But I'm trying. Dinner time is a little better. Today at lunch I had delicious soup but could only get in the broth. Sigh. Shall see. Got noodles, a little chicken and more noodles in me at dinner tonight. Better than I've eaten for a few days. Thanks mostly to my mom's cooking!!

Have another Avastin infusion tomorrow. Grateful my sister is going to be with me. I love my family. So much. I'm so grateful to spend time with them. So happy I'm close by now... Makes it so apparent to me how much I missed them last year... and how many people helped be my family in Hong Kong last year. I miss those beautiful, supportive friends...

Went to the best yoga instructor ever's class yesterday. Appreciated her advice on how to help my back, throat and eyebrows. Working to not raise my eyebrows so often. I never noticed how much I use them til now and she pointed out that it adds stress that's unnecessary. Also learned about some chair poses that should help me, give me more energy... Boy I've missed her classes. Happy to sneak in one again...  after the PET and MRI it felt good to do a healthy action.

Gotta do a crazy face too mom! :)

Thanks as always for journeying with me...
Finding promise.
Holding hope close to my heart and being patient, very patient with myself.

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!