Thursday, August 27, 2015

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-

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.

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:

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:

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

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...

Monday, August 24, 2015

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!

Monday, August 17, 2015

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 -
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...

Saturday, August 15, 2015

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...

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!

Saturday, August 8, 2015

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.

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:

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.

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!

Wednesday, August 5, 2015

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
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...