Friday, July 31, 2015

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:

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:
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...

Tuesday, July 28, 2015

Cut me a break darnit

Hair is growing out more!

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:
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...

Tuesday, July 21, 2015


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

Liked articles:
I like the idea of cancer treatment people connecting with one another...
Also found the link here: 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:

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...

Tuesday, July 14, 2015

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.

Wednesday, July 8, 2015

Leaving, on a jet plane...

Hats are getting really challenging to wear...
90 degrees plus humidity is hard without the hat!
Well. It has been almost a week since that appointment.
I've been more conscious of what I'm feeling inside but overall, I've felt pretty darn healthy.
Hair is growing back.
Energy is mediocre (mainly because I've had hideous sleep, hoping to resolve sooner than later).
Appetite is full force, happy to be gaining some weight.
Saying goodbye left and right to wonderful, beautiful friends and people who are almost more like family to us.  It is ridiculously hard.
We've been getting rid of things and planning out packing for ages. Shipping back many boxes to save money on overweight bags, etc... Shall see how it goes tomorrow at checkin!
The boxes we shipped take TWO months to arrive in Oregon. I've decided to look on it as little happy surprises once each box arrives.
I have an appointment with my oncologist for next Tuesday. I have PET scans, a packet from my former oncologist, and x-rays all organized and ready to bring to the office before the appointment. I have a list of questions I've been accumulating in my journal book. Helps to write them down instead of festering on one thing after another.
For now, I cannot do anything about it, will just treat myself well.
Bringing our dog to the cargo shipping area...
Flying out tomorrow in the evening, so excited to head home.
Our dog flew home almost a week ago and handled the transition incredibly well. So relieved. My wonderful parents are caring for her until our return to the US. It is a little sad to see my dog's aging through my parents eyes since her sight/hearing has changed so much, plus her gait has changed... but her loving nature and wonderful companionship is still beautiful.
After way too many interviews at 11:30pm and 5:30/6am I have a new work home to head to in mid-August. Really happy to be a library/tech specialist, my passion is that combination and I look forward to meeting new students, staff, and community members.
So, overall? Feeling fine with life. Poor hand presently health-wise but shall be maintaining complimentary practices to keep a healthy focus and exploring other options when I settle in Oregon.
Thanks as always for journeying with me... Getting along. Getting about. Appreciating life. Not festering on the negatives... refocusing the mind on positives.

Going around now with this hairstyle, very very short, but so much cooler,
bearable in this heat...
So happy to have hair! :)

Goodbye empty apartment!

Thursday, July 2, 2015

Whack a Mole, Results Not Terrific

I am impatient.
It has been days.
I've been distracting myself.
Getting rid of stuff. Packing. Sorting. Selling items.
But I just want the clear scan results now.
I told myself today, at this time tomorrow, you'll know.
Didn't help my mind wandering.
There's so many what if's that have to be redirected at this time to the positive mantras.
Deep breath.
Calm thoughts.

Doesn't help that my wonderful husband is gone in the Philippines this week. Miss him tremendously.
There were complications while he was there and I'll be glad to simply get him home in one piece...

Results are tomorrow.
Hair is still growing in.
Eyebrows and eyelashes as well.
Stamina ebbs and flows. Mostly I'm overwhelmed by heat and humidity... Exhausts me as it does any normal person.

Thank you for the prayers, good wishes, and hope.
Received good news about work for me... will share once more official.
Grateful my husband is home in mostly one piece.
He was able to be there during the results appointment.
Well. The radiation and chemo cleared up the two worrisome areas- lung clear, lymph node near heart clear. (Clean and clear is pleasant to hear...)

Unfortunately, I have two new tumor sites.
That means two new cancer tumor areas.
One in chest cavity behind my lung by my back- on another lymph node.
One in my right adrenal gland beneath my liver.

My oncologist said that in Oregon he wouldn't recommend standard chemo since I had such a hard time the last two treatments. He thinks I might qualify for new therapy trials and would highly recommend I look into immunotherapy.

We asked if we stayed in Hong Kong what my oncologist would plan, he said radiation to the two new tumor areas to control growth but not to cure it.

So. Next? Going to see my new oncologist in Oregon the week after we move home. Have records, transfer papers and more...

Presently? In shock. Disappointed. Not too surprised. Sucks though. Cancer sucks. Feeling strong, just a little pain in my back (found out that's pretty much where one of the new tumors is located.) Wish it were different results.

My husband says that stage 4 cancer is like playing whack-a-mole. I agree.

Thanks as always for journeying with me... have a feeling this journaling is going to be continuing for quite some time...