Tenatively working, very carefully...

Well.
Went to a memorial today for a beautiful person. Broke my heart and lifted me at the same time.
I gave in a little to my body. Was concerned in the morning because I was a little too shaky for my liking, so I stayed home for a few hours and then went to a work meeting. It was a wise choice. I needed it... really trying to read what is going on, sometimes it is too hard though.
I've been in a bit of heck for three days. Seem to have turned the corner today.
So. Word of warning my friends. A gross one, sorry.
When you haven't gone #2 in 2 weeks, having the problem resolved can be very, very, very painful.
My oncologist looked like she wanted to put me in the hospital when I told her I'd been constipated for a little too long. She was upset. Gave me prescriptions and I followed her directions. What followed totally sucked. But it worked by the 3rd day and now I'm doing better. NEVER NEVER NEVER my friends, NEVER let constipation go so far. Seriously. I'll just say that I felt like I was giving birth in a way NO ONE should EVER experience. Scared my husband with the pain sounds I had (didn't realize he was home, thought I had a little time to myself to just yell, poor guy).
So, that's enough of that. One of the prescriptions I'm on gives this side effect, so I'll be taking yet more medicine to avoid for the future (plus natural stuff too). Blech. Unfortunately, swallowing still sucks. So so good that I have a feeding tube. When I got the prescription the other day, I tried to swallow the pills. That was hard. Now I'm crushing them and putting them in my feeding tube. Whatever works. Poor body is way too tired of pills, I'll respect that. I'm very tired of pills as well.

But at least my muscles had mostly recovered from the other pain from the feeding tube so they could help me vs. hinder the situation further.
Sigh.
I am sort of feeling stronger. Think I was shaky this morning because of the final evening of heck, feeling a bit better now.
Hoping for a stronger Friday/weekend. Shall see!

I'm very excited for my second dose of Nivolumab this Saturday. My sister will be with me which always brightens my day. A year ago she was with me helping out with chemo treatment in Hong Kong. So happy to be home and a quick text/message/phone call/visit away now.

My oncologist wants to have me go thru a scan after 2 months, which is 4 doses. Shall see. I'm picturing my immune system working the right way and those darn cancer cells dying and tumors shrinking.

Good news? Monday I got on the scale and it said 119. HALLELUJAH! Still gaining weight... Shall see what it is tomorrow. Might be a little lighter after those few days of heck this week, but never know.

Thanks as always for journeying with me. Appreciating the time I'm at work, home, visiting with people... so grateful for every day and all the beautiful support I receive...

No work yet, missed? 1.5 weeks...

Hair is growing!

I love spending time at home, with my dog, with my mom, but really and truly, I really had hoped I'd be back at work this week. I was so wrong. This optimistic nurse on Saturday said we're getting you sorted out so that you can get right back into work come Monday. That did not happen.
I had to advocate for myself in an aggressive manner this time. So, thought I'd share some of the communication... but honestly when I think about it now, it wasn't as terrible.... oh yes, it was... but I didn't have to write everything I did to the nurses... I admit that...

Sunday I felt fully debilitated. I was hunched over in pain. Couldn't stand up straight. Couldn't get comfortable in bed. Was in simply terrible pain. And I was so sick of doctors offices by this point...

I sent this message on Sunday evening:

Me:
The feeding tube is working well, I'm up to the suggested amount of food and water but I am in frequent internal pain. Unsure if the tube is pushing at something inside but I can't walk without being hunched over in pain and I can't lay down without massive painful muscle spasms. The incision site is clean.
Not sure who to contact. Frustrated and concerned.
The home nurse was helpful but did not trim the tube hardly at all so I am taping up a really long tube which is frustrating as well. It is at least 8 inches long.
Would love advice. Children's Liquid Tylenol helped a miniscule amount but I'd like to focus my energy on being strong for the Nivolumab to do what it needs to do. Don't think my stomach muscles have relaxed in at least 12 hours.
==

Then on Monday I had these interactions:

===

Nurse: Hello,
As I mentioned on our phone call, Dr. ___ would like to to follow up regarding the pain from the PEG tube with the GI team that inserted the PEG on Friday. She is not concerned with you taking the Children's Tylenol for breakthrough pain, and encourages you take this as ordered for pain.
You may want to use heat, or cold, to your abdomin to help ease the cramping.
We hope this resolves your discomfort.

===

Me: Thank you,
I know this is more than just discomfort. I've had a hysterectomy, a partial lung removal, a lumpectomy. I've had drains before in me for days. I've had pain before. I'm good dealing with pain. Honest. This is debilitating. I cannot stand up straight. I cannot walk without pain. I cannot lay down without taking 10 minutes to situate myself. This is more that just discomfort. I am very concerned. Please help. Pleading now.
I honestly think someone should actually look at me instead of telling me to use a heating/cooling pad. I depend on my job. I had to take another sick day. I'm very concerned that I'm still stuck in bed.

===
Nurse: Hi again,
I noticed this message because it was under Dr. ____ but the provider who placed your PEG tube was Dr. ____  so I will be sending the message to her team to follow up with you.
Take care, ___

===

Nurse: Hello,
This is P___, RN of Dr. ___.
I am sorry I haven't been able to reach you via phone but I discussed with Dr. ___ and she believes you should be evaluated in the Emergency department in regards to your debilitating PEG pain.
You might need a CT-scan and the GI fellow on call can see you in person there.
We want to make sure you are safe.
___ RN

===

Me: Thank you. I am waiting at the ER. Honestly feel like I'm being punished being sent to the ER for speaking up for myself.
I've never been sent to the ER in the two + years I've dealt with cancer.
The germs and exposure here in addition to wait time for goodness knows how long is not pleasant. I just had chemo/immunotherapy treatment on Saturday. I was told to avoid germs.
But I'm doing as I've been told.
Thank you.
======

Nurse: I am sorry you feel this way Debbie, but we don't know what could be wrong unless somebody lays eyes on you. Unfortunately, at a clinic setting we don't have the ability to see patient for urgent evaluations that your stated pain warrants.
I hope you can be seen soon in ED.
Sincerely,
___ RN

======

Posted this after the ER visit:

Home from ER after 4 hours. Glad I got seen instead of accepting being put off by doctors but man I didn't enjoy the ER much. 
I found out I'm a special case (go figure). I'm 1 in 10 patients who have a feeding tube complication of basically a charley horse/massive pain at the incision area where they cut thru my abdominal wall/muscle/nerve. So pain should subside soon enough (they said 4 or so days) So relieved to have an answer. Pain meds might help. Thanks to all concerned. Just chilling out at home and appreciating my parents who have been thru too many days of my medical mishap lately.

===

So, that was Monday. Now it is Saturday.

Today, Saturday, is the FIRST day I am able to easily get up/move around/have energy/almost feel like "me". Seriously. That's 8 days after the procedure that I was supposed to recover from within 24 hours. Harumph.

I missed work all week including a costume book character celebration (broke my heart to miss), a book fair (I've missed book fairs for the 3 years in Hong Kong and was so upset to miss my first one at my new school, everything went smooth because there's an amazing team/staff who manage it but MAN I hated to miss it...)

Bah. 

Hooray for feeling a little human.

Not fond of the formula I'm on but yesterday I went with my mom to my naturopath and we discussed how to make my own healthy formula packed with greens, vitamins, healthy energy mix, etc. Looking forward to trying out soon. 

What am I dealing with now? Pain- if I cough, heaven forbid. I'm pretty debilitated if I cough. My recovery time from a coughing fit is much quicker though. Not quite standing up straight but MUCH better than before. A mom who has watched me at my lowest and celebrated me getting around smoothly today. Pile up of emails at work and learning to let go once again.
Weight. I'm up to 115 now. Stable there. Hoping to gain more consistently, will see. Crazy to be below 130 in my opinion but I can gain it again... I'm sure I can.

VERY happy to be on Nivolumab. I'm excited and hopeful. Seriously hopeful. So grateful to people who have helped out. Receiving a book on feeding tubes and recipes, etc. last night was a gift, wonderful surprise. Kiddo getting to attend an awesome Halloween party and being so happy... plus his final soccer game today. 

So relieved to count on my parents. Relieved that my husband has a job that is turning out ok. Relieved that the kiddo is starting the after school program on Monday. Hopeful to go to work on Monday, shall see, won't push myself!

I was recommended to visit this feeding tube community:

Feeding Tube support community: (very overwhelming site)
http://oley.org/index.html

Not too much else to share.
Hair is growing out and getting unruly. Love it still but man it is starting to be an afro... want to grow it out for another month or so and then will try out getting a very light trim. Happy happy happy to have hair. So relieved the Nivolumab doesn't make my hair fall out (yes, I'd still take it if I did make my hair fall out, but I'm celebrating having hair here!)

Hooray for hope.
Thanks, as always, for journeying with me...

Feeding tube? Check. Nivolumab? Check.

Catherine and I- she can get me to smile in a dr. office!

Yesterday I got my first infusion of the immunotherapy, Nivolumab. Scheduled to receive it every two weeks indefinitely... A nurse I was chatting with said this about my new oncologist "People don't get in her way..." So happy to have a strong advocate in my court...
Happy first dose is in. Sure there are a few worrisome side effects but worth it for hope and life longevity....

I got the feeding tube on Friday and learned how to use it Saturday. Happy to be getting some nourishment. Internally the tube is a little torturesome, makes muscles spasm whenever I move, incredibly frustrating. Trying to breathe my way thru the pain, shall see if this is something I heal from or if I have to get used to... Laying down takes me five minutes to slowly move and avoid pain spasms... same with walking and presently I'm walking hunched over, not healthy. Tried kids liquid tylenol and I think it helped a bit... I'm on additional pain medicine that's keeping tumor pain mostly in check... Stood on a scale today and was at 118, hooray!!!!! If I wasn't dealing with the pain I think I'd be doing so much better stamina wise. Certainly have more color in my cheeks... and haven't felt like fainting since Wednesday, phew...

It is odd to feed myself by tube. It is a ghastly long tube in my opinion. The home visit nurse cut off around 6 inches and still it is long!! I have protein drinks I use and add in water before and afterwards. Almost scientific...

This ding dong IV was in me for 2 days...
so a new line didn't have to be started...
happy bees tape this time!

Want to get back to work but will see about this pain first...

Grateful my friend Catherine went to my oncologist appointment and feeding tube procedure with me on Friday and also my first dose of Nivolumab on Saturday...
My mom and husband also learned how to use my feeding tube... and my happy boy had a great time with my parents on his day off school and then loved a fun fulled time with his aunt and uncle for overnight fun. Happy he has stability and fun. He's worried about me so it is good he has happy healthy distractions...

Saying "yes" to offers of help has always overwhelmed me but I am doing so more frequently. My friend Miriam visited and cleaned our much needed to be cleaned bathrooms... so grateful and relieved... my mom has also had a eagle eye on many ways she can lighten our loads... Doug and the kiddo can only do so much, especially with Doug working full time now (hooray).

Hi feeding tube. Looks small and easy, right? Wrong....

Watched a little bit of the series: The Truth about Cancer, A Global Quest- important info but long and honestly draining for me to watch.
They mentioned something, The Gerson Therapy- not right for me presently, I've read about before: http://gerson.org/gerpress/the-gerson-therapy/  Interesting approach... Also https://en.wikipedia.org/wiki/Hoxsey_Therapy the Hoxsey Therapy was an interesting health practice approach...

Thanks for journeying with me as always, feeling like things are starting to look up... slowly but surely...

More hope, yes thank you, immunotherapy time is coming

At the technology/Future Ready Conference on
Friday. Had to wear my shirt to show that I'm
balanced between technology and print materials.

So, something happened today that should have occurred four months ago. But I've accepted that we're simply here now.
I saw my new oncologist today.
Got very clear, honest opinions from her. Received hope, hope, hope.
My husband and I walked away saying, "Yes, this is what we need."
Shall see about that one immunotherapy drug that connects to my biopsy/Foundation I testing. It might take some time to get approval for it. My new oncologist is willing to have me get that still. BUT she's working now on getting me on what I wanted to get on 4 months ago: Nivolumab. An immunotherapy drug. It is the one that is in a phase II study for metastatic cervical cancer patients.
 http://www.chemocare.com/chemotherapy/drug-info/Nivolumab.aspx
https://www.mskcc.org/cancer-care/clinical-trials/15-116
She wants me off of Avastin. Said that it isn't really viable on its own and she doesn't find a need for it in conjunction with Nivolumab. I'm honestly thrilled with that.

I am hopeful.
I am grateful.
I am relieved.

Avastin with blue planes? afterwards. The nurse got
a lecture from me and was much more careful and
aware of what went wrong with our last session.
She used a heating pad and did the "drip" on a
different vein. No new bruises, phew. 

My brain MRI led to nothing new (thank goodness!)
My PET scan led to not too much new, although apparently I had some time of a rib fracture on my right side?! Odd information but makes sense where I was hurting for around 3 months on my right side after surgery last August. Apparently there's something that lit up on that side but shall see. My oncologist was not concerned. It wasn't highlighted as a concern.

I'm hopeful.

I do have to go and get the endoscopy on Thursday. Shall see about pain afterwards. Not thrilled. Shall see if the stint is put in. The gastro-enterologist is concerned about the fact that I got Avastin last Friday. He's not sure if I will heal well if there is any cuts internally. Shall see what he decides. I just want to swallow consistently again. I'm on Prilosec which seems to have eased some things in the morning a tiny bit- less throwing up incidents, but still having issues overall. Getting food in as much as I can but I'm now down to 118, sigh. At least it isn't more, I guess.

Bridge on our way back home on Hwy 101.

Friday was a bit busy with a tech conference, a chat with my oncologist during one break, Avastin treatment, and then meeting up for a carpool down to Coos Bay. My friend and I chatted all four hours on our way to Coos Bay, so wonderful... The doctors on Thursday had looked at me with raised eyebrows when they heard my plans for the weekend but I had faith that I'd planned things out well enough, and I think I had... I actually was able to get to the conference in Coos Bay and present on Saturday. I took a lot of breaks that day but really enjoyed every minute possible. Loved meeting up with educator/school library colleagues from around Oregon and also some beautiful, inspiring author friends as well. So many wonderful hugs exchanged, filled me with such happiness... Overwhelming a little bit, but in a good way. Sunday I slept and rested and rode home with my lovely friend who was fine with a quieter Debbie and an audiobook.

So... getting thru the days. Looking forward to a few non-medical, more work focused days. Hooray for them.

Thanks as always for journeying with me.
Here's to hope.

I loved seeing this blooming still...

A Little Hope? Yes, thank you.

Loved special sister time... My curls are starting to poof out!
Love each and every one of them.

Had an ok day overall. LOW energy. Caught myself falling asleep during something I found fascinating, frustrating.
Work was ok.
Went to radiologist. LONG appointment.
This is a doctor who doesn't give up.
She doesn't want to radiate any time soon. She really wants to wait since the tumor is exactly where I've had radiation before... she's concerned that the radiation won't work well and will actually further aggravate my esophagus... I understand why she's concerned and honestly appreciate it... even though I also have that attitude thinking, "darn it just zap the heck out of those tumors already!"
I told her how upset I was over the stagnant course of treatment and within an hour she found a new oncologist who is providing me with another bit of hope.
I have to go get yet another PET scan tomorrow. Oh boy. Hate those when it is at noon, takes 3 hours and I have to fast 6 hours in advance. Blech. But at least there's something happening! I also have to get a MRI brain scan soon.
Possibilities for immunotherapy are there. Shall see.
Found out there might need to be a stint placed in my esophagus... will see a specialist Thursday afternoon and find out more about that. Yikes.  Hadn't heard about getting a stint before. Glad to have a doctor who covers her bases and knows what is going on. Saw a scan of my esophagus, there really looks like it is closed up partway down it...
I appreciated getting the suggestion to sleep more at an angle to see if that can help all my swallowing/coughing issues in the mornings. Here's hoping that works. My parents passed me a pillow and my husband picked me up a few more pillows as well. He referenced The Princess and the Pea when we looked at all the pillows piled up...
Really grateful for the appointment. Amazing how much more relieved I felt after the appointment. Give me a little hope people, that's all I ask...
My radiologist even called me later in the evening to fill me in on the referral. Love how she works and thinks, really appreciate having her part of my medical team...
Caught up with my favorite massage therapist the other day, was so refreshing and helpful... Grateful.
Less pain as well.
Going to qi gong classes on most Mondays and even get to see a beautiful friend when I go to class... good incentive. Really enjoying this instructor even though it is very different from my past classes.
Shall see how the rest of the week goes.
Thanks for journeying with me...

PS My love and prayers go to the Traller family. Heartbroken after learning the news that Nathalie died last night. She provided so many with a beautiful light of energy, love and hope. She has touched so many people and will be remembered through future years... The advocacy and fundraising for ASPS and children with cancer hopefully will help future children who have this diagnosis and others. Although noone should ever have to deal with cancer. Let there be much more research for rarer forms of cancer....

Birthday and Pacing Myself

Lovely yoga time with my friend.
Special entrance to the fitness club.

Well. Already wrote this post and everything was lost... rewriting is a little brief.
Days have flown by.

Birthday treat.

I'm alive.
I'm swallowing food, mostly, mornings are hard but by dinner I'm doing better. Couldn't swallow my supplements this morning.
Today was a little challenging.
My body reminded me to stop. right. now. today when I went to a conference.
I enjoyed a morning workshop, presented about creating a reading classroom community and booktalked 70+ books in 55 minutes, and then I enjoyed watching wonderful authors receive book awards and share wonderful thoughts... After an hour, sitting in a chair was not agreeing with me. Very frustrating. I got up while the keynote speaker shared. No resolving pain or exhaustion. Went and found a couch on the other side of the building. Laid down. Took about an hour to feel ok. A catering staff person brought me water. Another person asked if they could call anyone. Then they gave me lunch early... I ate a little bit and felt a tiny bit better.

Special birthday flowers from a friend.

Special birthday flowers from family.

Went and said hi to a few beloved authors and quickly got in my car and drove home. Felt strong enough and wasn't in as much pain/exhaustion by that time. Rested pretty much the rest of the day.
Got thru the past 9 days ok. On Monday I saw a genetic counselor (mostly a waste of my time, useful for my family hopefully) and also my naturopathic dr. He didn't have much to suggest for me with the swallowing and such, just wants me to get to another oncologist to get a second opinion, that's happening in a few weeks.
Enjoyed work even with training interruptions. Appreciating not just being a cancer patient there. I'm a valued staff member. Most of my coworkers know how I am with the medical situation but they don't dig too much, just a good caring group. Love that kids are smiling when I come in the room now to teach... Also appreciated a birthday serenade from a class of first graders- good friend made sure people knew it was by birthday... I shared it with anyone I was walking around with, never been one to be quiet about celebrating my birthday.

Birthday dinner time with my love.

Enjoyed family dinner time. Went to Pastini's and actually ate everything on my plate. Including tiramisu cake...
The next week is full of medical stuff.
I'm seeing a radiation specialist on Tuesday and Thursday I see a gastro-enterologist and oncologist. Then Friday I get Avastin again.
Still learning how to read my body and be patient with myself... since my body seems to be changing, I feel a bit unpredictable.

Love my present from a former student who runs Cranes of Hope.
Lovely blessing for my car.

Thanks for journeying with me as always...

Oh, hi chemo, you again?

Multnomah Falls behind... carefully paced myself with this walk.

I've had a few very full, good days.
Meeting with new administration made me happy and grateful for support and faith in my abilities... Having time with family replenishes my energy.
Meeting up with families I treasured at my old school and seeing how much my former students have grown was special...
Going to the beautiful waterfalls at the Columbia Gorge was fun...
Meeting old and new colleagues for the future was wonderful...

Going to see my oncologist today was... mediocre. He very thoughtfully answered all my questions and clarified the situation at hand. "I hope you can understand, we're at the end of our options with treatment for you at this point." He is going ahead with Foundation 1 testing that I know needs to be done using the cells from the biopsy.
He wasn't thrilled with my question about off-label prescription of an immunotherapy drug but I'll be patient as I know Foundation 1 testing needs to happen to see about targeted therapy. He mentioned that having one patient getting a trial drug is not something he'd recommend. I say? Tough. I want to try. So, shall see...

Our sweet 15 year old dog Dulcie and I chilled out while
the guys went on with the hike... She was happy when her dad returned.

He also decided that we should begin chemo again, but not the scary kind that makes me lose my hair or decreases my white blood cells...
It is Avastin, chemo that is what he calls "single agent" to slow the progression rate of my tumors.
It does have side effects, hard for me to really know how I'll react since before when I had three chemo drugs being pumped into me there were so many side effects. I know I had a bloody nose. I know I didn't heal as well with scratches and such. There's loads of side effects listed on the website- http://www.avastin.com/patient

We talked with him about WHEN to have the Avastin begin and he said "Now"... So, tomorrow I begin. I'll get Avastin once every three weeks. It will take two hours or so vs. 4-6-8 hours of past chemo sessions. I am negotiating on time and such presently as they don't do treatment on Saturdays and I'm not thrilled with impacting work every three weeks. I also have to have a doctor check in 1-2 days before the treatment and those appointments are not available in the later afternoon. I know that most cancer patients aren't working full time and such but MEH to having to impact work hours. Shall see what happens. I'm concerned with things happening every three weeks. I looked at the calendar and at least I won't have to have chemo on my birthday.

---

Multnomah Falls is just astounding... so beautiful.

Other thoughts recently:
Reconnecting with a wonderful friend, Trudy, was beautiful and uplifting the other day. I appreciate the interesting resource she sent my way. Helpful article with some supplements that provide new ideas.
http://bottomlinepersonal.com/4-secret-cancer-fighters/

I appreciate that there's new options to help slow tumor growth, etc. Healthy living is also a bonus.

We also talked about how I was frustrated to not find support groups here in Oregon. I knew I was in a truly wonderful supportive environment in Hong Kong. Hoping to connect with people here. Trudy sent me a list of groups... Hooray, thank you again Trudy!
I find this list promising:
http://www.breastfriends.org/breast-cancer-charity/affiliates/oregon/oregon-support-groups/

I was frustrated with most groups because they meet during the daytime hour.... can't make it, but if I could, I'd attend these group meetings:
http://www.legacyhealth.org/health-services-and-information/health-services/for-adults-a-z/cancer/all-cancer-services/support-groups.aspx

http://www.cancermatters.com/portland/cancer-support-groups-2/gynecologic-cancer-support-group-2/

http://oregon.providence.org/~/media/files/providence%20or%20migrated%20pdfs/patients%20toolkit/cancer%20support%20group%20list.pdf


Also, appreciated learning about Harmony Hill- a retreat that is available to cancer fighters/thrivers/survivors: http://www.harmonyhill.org/

Alive Inside- what a beautiful inspiring movie... touching... made me cry a few times. Hooray for music and connections and respect and support... brilliant, highly recommended. Thanks to my mom for telling me about it!

Our alert Dulcie... She isn't showing side effects yet with the sarcoma.
Love our days with her. Proud of her ability to still go on family adventures!

Well, even though I'm returning to chemo, at least this time it won't be so debilitating. 

I will still be able to enjoy the days.

I'll still pay attention to my stamina.

I'll enjoy spending time with family.

I'll be able to work and settle into my new "school home"...

Thanks for journeying with me, as always...

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!

Answers, wasted time?

Love my new Harry Potter dress... picture taken last week.
I can see a difference in my hair growth in a week...
nice to feel stronger.

I know. Take it one day at a time. But after 5 weeks, I'm slightly put out that my doctors here finally agree with my oncologist and many other specialists in Hong Kong.
Talked with an assistant today who confirmed that I have metastatic cervical cancer. A relief to be out of the 'what in the world is he talking about, another cancer?' zone we were in for a few weeks there. Funny to talk with someone who asks, "Is your partner there? How are you feeling? I know this must come as a shock." Of course, my answer of "I'm fine, I'm relieved that my diagnosis, chemo and radiation treatment over the past year was for the right type of cancer, now can we get to scheduling an appointment with the next specialist please?"--- this might have thrown him off. I have to wait... AGAIN for another tumor board meeting this Thursday... then supposedly I might get an appointment this Friday, we'll see if  it happens. I'd be thrilled.
The assistant brought up chemo and how I said "no more chemo with the surgeon's assistant" but I clarified with "if it is targeted therapy that is actually confirmed that it will do something, I'm open." I really plan to meet with whichever specialist they finally refer me to and bring up the possibility of getting an "off label" prescription to an immunotherapy drug that looks promising and is being used with cervical cancer patients since I don't qualify for the trials with my dual diagnosis (breast cancer)...
For now, I'm really grateful that I'm keeping up with things and trying out a few new options...
1. I'm still oil pulling in the mornings.
2. I'm finishing my third week using nutritional supplements that help heal and strengthen my immune system. - Mannatech - http://www.mannatechblog.com/uncategorized/give-bodys-defence-department-boost/
3. I'm doing qigong sporatically, will get a routine going...
4. I'm still doing essential oil application every morning.
5. I'm still practicing healthy food intake including lemon water in the morning, green juice, no sugar, no nightshades, and more... added in solar water/blue bottles in sun which I'm loving since I don't enjoy drinking freezing cold water.
6. I tried out a "Journey" practitioner who led me on a deeply personal experience visiting past emotions and dealing with forgiveness... probably will share more on this another time.

So, I feel like I'm proactive and not doubting my choices, still working on my patience but happy to stop doubts... focusing more on my well being and being balanced instead of worrying about tumors...

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!

Listening to Fatigue

Appreciated these 40 questions to quiet your mind.
Mind quieting is a good thing.
My mind is a busy one... needs quieting here and there.
http://www.marcandangel.com/2015/08/05/40-questions-that-will-quiet-your-mind/

Appreciated reading about another cancer patient who is also dealing with a "can't be cured" diagnosis and her fatigue. I'm working hard to listen to my body and understand when I need a break. Today we were at a street fair and I went thru that shakey/sweaty feeling where I knew I just needed to lie down. Can't lie down in the middle of the street... so we caught a bicycle cart ride (free, woohoo!) back to the street we parked on.  Was quite grateful that the street fair has that as a bonus. **It was darn hot out and I wasn't sure if I was just overheated vs fatigued... was simply listening and acting on what my body was asking for... Sad because I was hoping to get to a favorite bookstore and wander a bit more but I'm listening. My husband drove us home and I rested and felt better after a few hours.
Here's that blogger's post on fatigue:
https://patcadigan.wordpress.com/2015/08/07/cancer-fatigue/

So, I'm doing ok.
The tumor isn't the scary one that cannot be biopsied.  Still is a terrible cancer tumor and such but at least they can get a sample.
The doctor's office took a few too many days (in my opinion) to tell me the results of that urine test and schedule the biopsy. Taught me I need to be really assertive and call/email right away.
I'm going for that biopsy of my adrenal gland on Tuesday August 11th. Last year I had a biopsy of my lung on August 13th- our wedding anniversary... I'm grateful the 11th isn't a "big day". Enough of those. Huge operation 2 years ago on my birthday sucked. No more.

Well.
Getting thru the days. Enjoying time with family. Appreciating being able to simply drive over to my sister's home, parent's home, friend's homes and visiting... even Skyping when time zones are closer is a beautiful thing...

Saw my acupunturist on Friday, I love my time with her. A healthy presence and I feel like what she does helps... I also recently got my teeth cleaned and checked and I don't have to deal with a skin graft on my gum, I fully recovered from the problems I was dealing before. I also found out I was able to stay away from getting more cavities, hooray for determination and maintenance. I'm very careful with my teeth, always have been... I'm also trying a new nutritional supplement program to help my immune system out... so far my body is mostly tolerating it. Happy to be doing something proactive vs all reactive...

Thanks for journeying with me....

Thank you so much to all companies that funded free rides... was a relief to catch this!

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...

Glimmers, noticing them

Tuesday afternoon:
Having glimmers of hope here and there.
Talked with a oncology nurse who is also an advocate about my case. It was enlightening.
I learned that I might not have to go thru a study to get the immunotherapy drug I'm interested in.
I learned that I might be able to get financial help to take the immunotherapy drug I'm interested in.
I learned about genetic testing/Foundation I testing to analyze exactly what is going on with my tumor(s) especially after a second cancer diagnosis.
Link to info on Foundation I testing:
http://foundationone.com/docs/FM_SpecimenGuidelines_2015-03-17.pdf?__hstc=197910000.ca54bd200688390fb3cfffed497960ad.1401198872498.1432697851762.1432747722833.28&__hssc=197910000.2.1432747722833&__hsfp=196914911


Talk about a turnaround.
I talked with a radiation oncologist today and appreciated every minute. Didn't expect to say that, but I did.
We talked about many things.
The big thing that resonated for me was that she would not want to radiate my tumor area until a year has passed from the past radiation treatment site. A year. Yes, that means the tumor is growing and worrisome, but a break from radiation. I can fully accept this.
She said if there was an increase in symptoms from the tumor then she would probably change that plan- symptoms would include a dry cough, blood cough, obstruction leading to a collapsed lung...

She plans to refer me to a genetics counselor. She said "Honestly, any time a patient has more than one cancer diagnosis, we send them to a genetic counselor." Ok, sounds wise to me...
I appreciated knowing that it is highly unlikely that I'll be dealing with an operation anytime soon. Instead I'll probably be dealing with the following things:
In August:
CT with adrenal protocol to figure out what is going on with my adrenal gland
Tissue biopsy for my tumor in my chest
Other possible tests...
In September:
Possibly another PET scan
Genetics counselor

Watching Highly Evolved Human episodes always makes me smile. Appreciate the perspective... This time he shares about how having a job was so liberating in the middle of his chemo treatment. I get that. It wasn't good for me to be home for so many months... I love being around other people and having a purpose beyond being a "cancer patient"...

I went to a link today that is a "why not?" one: blue water:

http://beforeitsnews.com/alternative/2015/07/blue-solar-water-heals-the-body-and-spirit-here-is-how-to-make-it-3191218.html
Looks like a healthy way to have a different type of drinking water! Thanks for the heads up about this Lenore! :)

Friday more thoughts- 
Ok, a few thoughts and communications have occurred.
The board met and talked about my case more.
They said that the adrenal gland and lymph nodes will be their focus presently. They want to get a biopsy of my adrenal gland and do a mutational analysis of the cells.
Then I will need to meet with a medical oncologist who wll assess targeted therapy options for me (chemo). They might want to assess whether the adrenal gland needs to be removed.
I'll also eventually see a genetic counselor (at the end of September, nothing seems to move quick here to be honest, ech.)
I'll also see a research medical oncologist eventually who will be analyizing the mutational analysis results from the adrenal gland biopsy.

Their big question is what the relationship is between the tumors- cervic, breast, lung, lymph nodes, adrenal gland... I feel like quite the case study.

Thanks for journeying with me...

Cut me a break darnit

Hair is growing out more!

Warning.
One of my most scattered posts.
Mainly because I've treated it as a quick journal over a few days and this is the first day I've had wifi. Hooray for that finally getting installed after 2.5 weeks being home!

Saturday- Well.
I'm waiting for Monday's appointment with a cardio thoracic surgeon and Tuesday's appointment with the radiation oncologist. I'm extremely frustrated with a few things lately. Like how records couldn't be passed to the two specialists until today. And then the radiation oncologist's office calls and tells me that they don't have the proper records. And when I call Hong Kong about this, I get a PDF that I need to fill out, mail back, pay on the phone record request forms costs, and then in 9-15 days I'll receive the records. Seriously. Cut me a break.
I did my research. Got very excited about one study. Only to find out that my breast cancer is a conflict and eliminates me from the study. I talked to another person who mentioned the same thing. Another place I didn't find the protocol appropriate, neither did my new oncologist... so that rules them out. And I'm finding that my oncologist was right, there isn't much in the way of immunotherapy treatments for cervical cancer (even though there is a specific one, I just don't qualify for it.) I'm NOT giving up though.

Saturday- I haven't been feeling myself for around 3 days. Pain in my back and chest is a little worse and my stomach is a bit of a nightmare. I'm trying to deal. Trying to stay strong and positive. But some days, I just want a stinking break.
Tuesday- **Update from this- OOPS, missed taking a pain pill for two days, that'll do me in... go into withdrawal- not recommended... add in stomach flu? terrible situation for anyone.

Glad to be back in Oregon so that if family are concerned about me saying I don't feel well they can drop by and check in with me vs. communicating via email/Skype. Beautiful to be so close to my mom, dad, sister and brother in law- plus so many wonderful friends as well.

Really appreciated reading this article:
http://www.bamradionetwork.com/edwords-blog/what-teachers-with-chronic-illnesses-wish-our-principals-knew
It has so much that I agree with. I went thru a few things that I decided not to share publically but if people read this article it would be helpful for understanding what anyone with a chronic illness experiences/thinks.

Monday- Ok... 
I have been a little distracted.
Too many things going on but in a mostly ok way.
Talked with another person in charge of a study I thought had possibility today and thanked her for not just saying "NO". What a relief. She said, "Oh, we try to help all people interested." Lovely attitude.

I went to see the cardio thoracic surgeon today and received no answers and a bunch of confusion.
Here's some confusing things:
1. The lymph nodes tumor in my chest near my heart isn't all cleared up apparently, but smaller... but the surgeon said the PET scan might be incorrect since it takes a while for radiation to finish what it is doing.
2. He doesn't totally agree that the tumors are metastatic cervical cancer, he thinks they could possibly be lung cancer (seriously?) I was really thrown by this one.
3. If it is metastatic cervical cancer, then he doesn't want to perform an operation, if it is lung cancer, he does. So... the tumor is there. Hmm. I'm annoyed about this one.
4. He will go to a tumor board on Thursday and share my case with numerous people and make some decisions and call me.
So. I walked away joking with my husband for a while and not quite believing the conversation.
Here's a "PLEASE DON'T DO THIS to another person situation:
When my husband and I were waiting for the surgeon, his student came in first to talk with me. Hmm. She began the conversation with "What are you doing here today?" Seriously, don't ask this question medical professionals. It makes people doubt your abilities and wonder about whether you even know about their case before you walk in. She actually had missed reviewing the PET scans- that she carried into the appointment- and after she walked out we waited 45 minutes more for the surgeon to come in. Hmm. I did tell her she made me very uncomfortable with that question and it made me wonder whether she had even read my files and she did clarify that they'd read the other documents, just not the PET scans. Hmm.

Love being home with my books.

I felt very good about how my nose works two days ago... I heard some popping noises and then smelled smoke coming from my dryer- which wasn't even operating at the time. Unplugged things and called a repair person. Today the person confirmed that we would have had a fire if I hadn't unplugged the dryer. We've ordered a new dryer- the old one was 10 years old, good life for it. Enough drama already.

Ready for a few mellow days. Oh wait, I have an appointment with a radiation oncologist.... oh my.

Thanks for journeying with me as always...

Researching...

Well.
Not laying down and taking things as they come.
Being proactive.
Doing research.
Tenative about some places.
Hopeful about others.

Liked articles:
http://www.newsweek.com/linkedin-cancer-354877
I like the idea of cancer treatment people connecting with one another...
Also found the link here: https://clinicaltrials.gov/ct2/home promising since it includes all clinical trials for cancer around the world. Searchable by type, etc. Found one I thought was hopeful, mostly.

New Cancer Survivors:
https://www.psychologytoday.com/articles/201503/the-new-cancer-survivors

So far, I'm investigating 8 options. Shall see. Slightly tired of repeating myself going over all my medical history, etc. Appreciating my oncologist's referral letter which pretty much includes it all in medical terms most seem to appreciate. Asking many questions before having any hope about any treatment option.
Concerned that my arthritis will conflict with most treatments since it is an auto-immune disorder. Also concerned with other factors, shall see.
Have 2 appointments for next week with cardio thoracic surgeon and radiation oncologist.

Enjoying time with family and friends.
Loved watching the movie Inside Out, brilliant one. Hooray for 1/2 price movies on Tuesdays at a nearby theater.

Cancer Research:
Looking into clinical trials and immunotherapy treatments in many states in the US and also in Israel.

At OHSU. Going back on Monday next week...

There's no place like home

Being home is quite a blessing.

I miss our friends back in Hong Kong but I do not miss slow elevators, apartment living, or pollution. I do miss walking to places vs. all the driving it takes to do things… It is lovely to be back in our old home after three years away. Quite a relief to have our dog home with us happy and healthy. Being able to go visit my family members or simply call them on the phone is beautiful.

We’re adjusting to life well enough here in Oregon. I love the temperature, feels pretty darn good to have a cool breeze. Getting together with friends and former colleagues is special too.

We now have some furniture and I got pictures up all over, so it feels more like a home now. Cannot believe how many books we’ve saved, I’ve unpacked them and am taking my time with various projects before I enjoy organizing them all.

I’m excited to have a job in my old school district, this time with a heavier focus on technology which is just fine, looking forward to having a new work home to settle in. Waiting on a few boxes to arrive from Hong Kong and organized another workbox at home to bring in… Not much since I cleared out and scanned everything that was important to me three years ago.

Today I went to my new oncologist. There is no miracle cure. There is no real solution presently for me- especially since I have metastatic cervical cancer; there are no trials presently for this cancer. I told my oncologist that I was frustrated to not find any people that have my cancer/stage to follow and learn about trials from and he said that’s because they are dead… Honesty. I’ll take it, I guess. He also said that if I did nothing, my tumors are in places that could grow for the next year and I could have around a year or so of life without any treatment… hmm. Abysmal but at least we have thoughts on things…

The oncologist said that he’d refer me to three specialists- cardio-thoracic surgeon to see about removing the lymph node up behind my lung on my back- my oncologist liked the idea of at least getting a sample of the lymph node for genetic testing… (I immediately thought about my nightmare experience with the needle sticking out of my side with the biopsy on my lung a year ago- in and out of the CT scanner with that needle sticking out- hold your breath, don’t breath, ok, now breathe… ech. But I know this is a very different area to biopsy/operate on… nerve wracking anyway…)

He wants me to meet with a radiation oncologist to see if it is even feasible to radiate the lymph node – if this lymph node is anywhere close to the other radiated area, can’t do it, shall see.

And also I will be sent to another doctor who is facilitating medical trials on immunotherapy. All the immunotherapy drugs presently on the market are more for others like breast cancer, lung cancer, skin cancer patients, not at all cervical cancer, so there’s a long shot for finding anything that might fit me. Shall see. I’m good with trying to find that long shot. My oncologist wasn’t certain what might be going on with my other tumor on the adrenal gland. He’s not as concerned with that tumor as he is the lymph node in my chest cavity since that lymph node can cause more problems quicker.

I need to research on immunotherapy options myself as well. My oncologist said that he’ll do his research and try to find as many options and possibilities for me. He said, “I can tell, you are the type of person who wants to explore every option. You won’t be happy unless you feel like you’ve left no stone unturned.” Very true. I explore, I research, I care.

So… here I am. Home. Adjusting. Appreciating life. Not adventuring much yet. More just enjoying the day-to-day life experience. Not quite relaxing yet but I’ll get there. Organizing is one of my specialties, so I’m enjoying the energy and stamina I have to complete projects. I love being able to do things right the first time if possible. Getting things sorted so that we can locate and enjoy them later is a beautiful thing… Happy to have a little time to do so. Now, also want to make more time to read again, books are beckoning and the public library is just a hop up the street. We don’t really have internet for another week, but finding ways around that presently but can't upload any pictures to accompany this post... I'll be flexible...

Thanks as always for journeying with me.