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.

Radiation Plans plus Pacing

I love being back at school. I do not love the morning wake up. It is wonderful to see students again, colleagues, and have the chance to tackle projects... It is fun to teach and my colleages haven't pushed with expectations (thank goodness)- I'm teaching classes and appreciating a little work time here and there to do cataloging and projects.

We made a big decision that I shared on my other blog but not here yet... we are going to move back to Oregon in July. This is a very positive decision even though we are going to miss so many friends, connections, life here in Hong Kong... We know that without this third cancer diagnosis we'd be in a different place... but we're happy and excited about the changes, especially my son.

Now that I know we're headed home, I'm addressing all the projects around the library that have been put off. I want there to be a smooth transition with my replacement stepping in to that gorgeous setting without anything piled up...

Today my husband and I went to see the very negative radiologist. My husband has actually forgotten about meeting him before, I think this is because neither of us want to remember conversations with him, the most blunt person I've ever experienced... and I'm pretty darn blunt. I disliked all my past appointments with him but one thing is for sure, once I met with him, I felt confident that avoiding the local hospital was a good idea. This round of radiation is risky and worrisome and I do not want to risk my life in any way. The local hospital oncologist told my husband and I that he didn't think the radiologists would even be willing to radiate the area that needs treatment...

So. Radiation is next. This Saturday is my final (for now- 2 later) chemo treatment, just one drug, getting thru them. Not pushing myself. No fainting, a few moments of tiredness where I realized I needed to slow down but overall, getting thru work and home life. I'm taking advantage of elevators at work. Not walking the stairs as much. Walking up stairs tires me out more than anything else.
Radiation plan- much more money than past two experiences. This time the radiologist wants to go for six weeks of treatment. 30 LONG days...
Here's what he shared:
I have a connective tissue disorder, rheumatoid arthritis, that has created issues in the past. The first round of radiation for cervical cancer had to be ended early because of this. The second round for breast cancer wasn't shortened at all though... He's concerned with my ability to successfully get through this round since it is 6 weeks long, 5 days a week... and there could be "nasty reaction" to radiation since it could compromise my heart, lungs, esophagus, trachea, spinal cord... there could be significant side effects, especially my lungs since the radiation will be going through it. The area I'll have radiated is called the mediastinum... He said with the 6 weeks it would be 5400 radiation dose, normally the 6 weeks is a 6000 radiation dose but because of my connective tissue disorder he wants to be careful and do less.
Side effects he listed at this time are: fatigue, possible damage to important areas of body like heart and lungs, appetite decrease... I can work throughout the treatment though... the hospital is down the street from my school. For the last two rounds I walked for 14 minutes (timed it to a "t") checked in, had radiation, walked up to the other area outside the hospital where either I'd take a bus home - drops me off right near our apartment- or take a taxi if there isn't a terribly long line... Shall see how I do for this round.

My oncologist wanted to possibly have more radiated beyond the tumor which surprised me quite a bit. (supraclavicular regions) It was something new. The radiologist didn't want to do this due to my connective tissue disorder, I'll be checking with my oncologist when I see him on Saturday about this. It would be radiating my neck area on both sides... Hmm.

Here's some of the quotes from the radiologist I took down:
"We are trying to reduce the chance of cancer spreading.... Although, the chance of it spreading in your current diagnosis is high.... The objective of treatment is to control cancer and maintain your quality of life.... Chemo isn't curative for cervical cancer.... There is no cure for your stage of cancer..."

Gee thanks, thrilled to meet with you. Great for my attitude... and my husband's... not. Wasn't looking for a cure, moved beyond that word a long while ago...

I know my husband and I are both focused on the tumor at hand. Reducing it, getting rid of it. I know there are cancer cells bouncing around in my body. Obviously. They showed up in my lung for goodness sake. I also know that I'm trying my best to stay positive and have healthy practices with preventative practices as well...
Yup.
That's what I have to share today.

Enjoying the week at work... tired... glad I had qi gong last night with friends, learned a few new exercises that will be useful. Think my instructor is fantastic.
Thanks for keeping up on the journey with me, know I've been a little more quiet but honestly embracing my time at work and treasuring my time at home as well. Balancing in writing and journaling when I feel like doing so...

Holiday. More than just cancer

Appreciating this holiday. I can look away from the disease and have a little forgetting about cancer at times which is beautiful. Vacationing with friends is such a wonderful experience since we can have wonderful conversations, great peaceful experiences, and our boys have fun entertaining one another instead of needing parent entertainment. (Single child in household sometimes means parents are the entertainment.)

We are at our switch now. Been horrible Internet so far, we don't think the next place we are flying to even provides Internet (this resort had meh connection that completely died a few days ago.) sneaking in this quick post enjoying the fact that for the first time in 14 weeks I don't have to be poked with a needle. Two more right after returning but that is ok. 

I painted my fingernails. Was getting more upset and honestly obsessed by how more and more of my nail beds were  infected/weak underneath. Not that painting nails makes everything right but instead it calms me a tremendous amount to look at something that pains me (yes, started feeling sharp pains on and off in fingertips and toes) and see something somewhat pretty. 

Only had to talk about cancer with a few of the locals who were kind and worried. English speaking is good here, especially in comparison to Hong Kong. One woman bought me some local super fruit and made me a smoothie with it. Shall be investigating it further even though it didn't taste terrific. 

Thanks for journeying with me. We will miss our friends who head back tomorrow, we are off on another adventure tomorrow in another area of the Philippines. I've had a week of ups and downs with energy so hoping will just continue ups and not push myself too much. 

The fruit is at the top and one snapshot of me at resort restaurant. Hooray for hats, hair still growing out but I'm not ready to share yet. Figure when I can look in mirror and feel confident then I'll be free outside with head coverage. I see a tiny bit of my hair curling though a little just more grey than brown so far. 

Happy holidays and New Year to all. 

White Blood Cell Increase Focus and clotting frustrations

Grateful for this crane gift from some parents at my school.
Very touched. Beautiful...

Told my husband today I'm really tired of getting stuff put in my body that is poisoning... Frustrating. I know that there is progress. I know this is important. But I hate seeing my blood cell counts all dropping. I really didn't enjoy getting a shot in my stomach to increase my white blood cells. I wonder how they'd be if I wasn't taking supplements and eating so healthy... hmm.
Read this, made me feel pretty reassured.
http://blogs.naturalnews.com/8-natural-ways-increase-white-blood-cell-count/

Had to be at my oncologist's different clinic for treatment this past Friday. There was one perk, the toilet. They had two toilets right there next to the lazy-boy chairs where you sit for treatment. So if you need to go to the bathroom you don't need to be disconnected from the treatment line. I always am concerned about getting disconnected from the treatment line because once my vein collapsed after one disconnection time...  Unfortunately, even though I got permission to get treatment in my other hand due to bruises and a hand that isn't happy with the 12 treatments from before... my right hand's vein now looks like it collapsed... the top of my hand is so blue... my nurse told me that I needed to treat it like a bruise and not worry. Ok. Shall see. Grateful that my right arm didn't swell from the medicine since it was a risk with lymph nodes being removed. But if only my blood would clot properly... shall see.

I'm certainly in countdown mode for the holiday, looking forward to work, looking forward to relaxing as well. Other things are starting up as well and I'm not quite seeing the light at the end of the tunnel with this treatment, oh well. Patience is a virtue and I'm hoping to come out the other side stronger and happier. With some hair growing out preferrably.

Enjoyed my first day back at work. Enjoyed catching up with students and staff. Have missed so many people... Having insomnia the night before didn't help... so wrapping up early to sleep... if possible, shall see.

Hope everyone celebrating Hanukah had a great first night, I also enjoyed the second night with kiddo just now. Had a great birthday celebration with him this weekend as well. Grateful for many friends helping with the event. Went thru kiddo's closet tonight and pulled so many things he's grown out of. Shocked how many things he's just had filling drawers and closets that he knew he'd grown out of... he's nervous about my next focus: going thru his toy cupboards...

Just a quick entry. Quite excited about family trip. Made some huge decisions and actions (good ones I think) that I'll share about when I can. Thanks for journeying...