Wednesday, September 23, 2015

Well Darn. That explains a little.

I just adore my guys...
Today is Yom Kippur.
Today is my husband's birthday.
Today I couldn't swallow.
I've had trouble swallowing for weeks now. Keep saying I'm having trouble. Had nausea because of it I think.
I got up to prepare to go to services for Yom Kippur this morning with family.
Got ready feeling a little shakey but ok overall until I finished taking my supplements and went for a bite of food. It felt stuck in my throat.
I told my husband, "Something's really wrong." Laid down on the couch. Didn't help.
Laid down in bed. Said sorry to family about missing services- glad they went without me.
After an hour I wrote my oncologist's office.
Said "I can't swallow and it is weird."
They called within a few hours.
Told me to go see my primary care physician. He was available so I went to see him mid-day.
He was concerned. I've lost 7 pounds in 2 weeks. Seriously. So frustrated about this.
He said, "Well, we have a good thing, you can still drink liquids, so you can gain weight with liquids." Yeah sure. Man, I LOVE food. I'm not pleased.
He sent me for an x-ray to see if there was some obstruction. Couldn't see anything on the x-ray. Found my scan interesting though since my internal organs have shifted a bit since my lower lung on the right is gone.
He told me I had to get a CT scan with a contrast = needle.
He performed a miracle and got one for me an hour later.
Quiet waiting room for my mom while I got the scan.
Then his nurse performed a miracle and got my insurance to approve of it within the 40 minutes it took for me to get there with my mom (I picked her up, needle = I want my mom!!! Or a loved one for support!)
The center I went to was terrific. NOT a hospital. All they do is scans, they are focused on you. That's the way to go in my opinion.
The wonderful person was able to get a line in me, quickly zip me in and out of the CT machine, put the contrast in me, again zip me in and out of the CT machine and I was done.
I've been avoiding scans.
Last week my physician's assistant (who I loved) really wanted to scan me right away but I told her I really didn't want more things zapping me/being pushed into me... can't avoid it now Debbie!

Got home.
Watched the end of the documentary on the comedian Tig on Netflix- I recommend it, loved it.
Snuggled with my dog.
Got the call.
My primary care physician called me and gave me news.
I should have called my husband in and put the dr. on speakerphone.
Didn't realize the brain dump I'd receive... good Dr. though.

So, the tumor of my lymph nodes that was always near my esophagus/heart that was 1.5 cm or so is now 3 or so cm. It is like a little cluster of grapes going down my esophagus and ending near my stomach. There are many enlarged lymph nodes...
They could be going into my muscle wall of my esophagus and slowing down my swallowing.
This could be the reason I've felt pain in my chest, this could be why I've been throwing up, this could be why I feel like when I swallow food is stuck when it gets down to my chest, this could be the reason I've been nauseaus, this could be the reason for many things. Sigh.

The doctor then went on to say that since surgery has been ruled out they probably will discuss radiation. If I continue to worsen, I'd need to have a feeding tube... seriously!! That blew my mind.
Not happy.

The doctor said he'd be calling my oncologist/physician's assistant in the morning and discussing my case and then someone will contact me with more thoughts.

I was not thrilled.
It is Yom Kippur.
It is my husband's birthday.
We went over to my parents and had a party for my husband.
My husband's kind of birthday cake- pumpkin pie!!
We had fun.
We laughed.
First I ate my mom's homemade matzoh ball soup. Felt fine.
Then I ate some avocado. YUM.
Then I had a few pieces of cheesy bread, because I wanted it.
Then I had a piece of pumpkin pie. Because I could.
Then I had a chocolate chip cookie. Because YUM. It is my favorite treat.
Then I had some grapes. Because I could.
So there. I ate. I didn't gag. I didn't throw up (I did throw up last night when I tried to swallow some supplements, it just isn't happening at night).
I love my sister and brother-in-law, they make me laugh and share
share so much love and happiness with everyone...
I ate.
I will give myself time.
I will get up earlier so I don't feel rushed.
I'll eat softer foods.
I'll boost my weight.
I will not deal with a freaking tube (I hope, stubborn Debbie digging in her heels.)

I'm sure I could turn this into a Laura Numeroff story- If you give a mouse a cookie... but naah.
I ate. That's enough.
My family is the best.
I love them.
I'm so lucky.
I'm so glad to be home with them.
My parents saved the day with our kiddo.
My parents are the best. Seriously.
Nope, we didn't plan the Peanuts matching gear. Just how we think.
My husband was able to recover from an interview, flat tire, and get home without worrying about our kiddo thanks to my dad picking him up...
My mom was there with me for the scan. The nurse said "You have a really sweet mom." And I said "Yes, yes I do."
I feel so lucky.
Thank you to all my family and friends who are pulling for me and praying for me. I appreciate it. I feel the support. Even in those low moments today, I know I'm loved and supported.
Thanks for keeping up on my journey. The ups and downs of it. Thanks for reading my long drawn out journals. They help me think out things... and hopefully help wonderful people understand what's going on...

Monday, September 21, 2015

Gettin' along

Buzzy smiling bees this time!
Been a over a week.
Doing better now.
Harsh lesson.
Don't be stubborn.
Don't be stoic.
If you are nauseaus and feeling shaky/weak for many days, something is wrong. Waiting just one more day to see if it goes away isn't wise at all.
I went after 8 days feeling terrible to the doctor.
She lectured me about simply calling and getting advice at least.
She told me that I needed to even email if I need help.
I know this.
I'm capable of asking for help.
Do I do so? Sometimes? NO. I'm darn stubborn.

So, anti-nausea medicine is a godsend when needed. As is cough medicine when needed.

I'm actually sleeping ok and stomach isn't terrible- it doesn't love anti-nausea meds but that's life.
Pain is actually ok overall. Sort of like arthritis pain in my chest and back. I can deal with it and if I'm hurting? Tylenol has simply been enough in the past days.

My dr. thinks I might have heartburn so we're trying a few tablespoons of apple cider vinegar at night to see if that will help me.

Also drinking warm happy lemon water with honey thru the day to help my throat out.

Chemo/Avastin went ok. Bruise from the needle looks hideous. Thank goodness it is long sleeve weather. Shall bring up what happened next time. Harumph. Haven't had a bruise like this in a long time and I honestly know exactly what went wrong.

My sweet snuggler
My dog is doing ok. She's gettin' along and snuggling with us like the beautiful soul she is.
My kiddo is settling into school ok overall. Grateful.
My husband is dealing with many job interviews. We have hope.
Birthdays are upon us. Husband's is first, which he really doesn't want to celebrate much.
Then mine next Friday. I'm all about saying HELL YEAH I'M STILL HERE AND LOVING LIFE!!! Here's to turning 42 without chemo or a hysterectomy on my birthday. Seriously. I'll take a peaceful, happy birthday. Enough already with the drama.

Feeling stronger on my end. I wrote my 1000th blog post on my Styling Librarian site. Feeling accomplished. Happy with what I do there.
Tired and know I am grateful for where I'm at...
Found a new massage therapist who specializes in cancer patients- pre/post/fighting, etc. She's lovely and likes essential oils, hooray.
New massage place
Appreciate the naturopathic dr. I found and the 20 mg. of Melatonin he prescribed me. Sleeping so much better than the past few years.
Enjoyed a new qi gong instructor and look forward to another class with her.
Grateful for my mom's support at chemo.
First time she could come with me.
My acupunturist said tonight, you're really getting your healthy ducks sorted out!
I also met with a Breast Friends support group. Lovely women. Good talk. Appreciated them telling me about the Dougie Center.  Not that we're dealing with death but they also deal with children who are affected by severe illnesses. Nice to know a resource, not that we find a need at the moment, but good to know it is there.

Still waiting on Foundation 1 testing on my tumor sample. I waited 3 weeks and then emailed since I was frustrated... they said they'd send when they knew anything.

Can't believe we've been home over 11 weeks and I'm not on anything I was hoping to be on. I'm happy I'm doing Mannatech and I have faith that it is helping heal my immune system, but man I'm annoyed with delays here in the US.

Hope everyone is gettin' along and finds those moments of joy all over their days!
Thanks for journeying with me...

Favorite book arrived from Hong Kong

Sunday, September 13, 2015

A Sliver of Me and The Journey

Look! My hair is growing out more! :)
This was a few days ago when I had more stamina...

It has been a little while since I journaled... getting thru the days.
The past four days have been rough and frustrating. I've felt nauseated, low appetite, weak, tired, fatigued, and more... and have gotten thru the days best I can. I think this is all due to being off pain medication. Could be a side effect of Avastin as well... It is disturbing how much this pain medication has masked symptoms. I am tempted to go back on the pain medication but it is frustrating since I have to switch to the US brand which is capsules vs. pills so I can't split them in 1/2. Hmm. Going to try to ride out for a few more days. Shall see.
Last week I met with a new Naturopath Dr. Appreciated the visit with him. He had sensible suggestions. Appreciated getting off some supplements that were redundant/not necessary. So many darn supplements to swallow every day. He increased my intake of a fermented mushroom mycelia extract that helps Avastin work better. He also has me taking Melatonin at night- it is really working. I take Melatonin and then do qigong. I also am taking more curcumin. He calls this the emperor of my anti-cancer herbs. He also recommended three new possible oncologists for me. Will be looking into them soon.
Avastin is due again this Friday. Meh. At least I am getting it done closer to home. Less travel time afterwards.
Visited with my acupuncturist recently as well. Appreciated her insight. Calming. She suggested I start doing qigong at night and that's just what I needed to do... I've been consistently doing qigong every night now which is a relief. I know I want to do more but it is ok for now. I'm also going to my first official class soon. Hooray for that...

Place I went today so my kiddo could do a "Mud Run" with the Cub Scouts... kiddo was thrilled. I found this bit peaceful.
Ok, it has been a month since I participated in The Journey experience. I have not made time to reflect on it beyond thinking about it... yet. So, now is a good time I suppose. 
So, one thing about The Journey is reaching into your past and dealing with issues... addressing conflict, to help you heal in whatever way you need. Help your cells heal from old wounds per se. I found this to be quite intriguing, so I went on the process to address my past. And peeled layer after emotional layer and then addressed all the layers one at a time. Sure, this doesn't resolve my issues overall but I appreciated the process. The journey practitioner took notes as I went thru the hour of the journey with her. Here are most of them:
Dear Debbie,
Here are some notes from your wonderful Journey process:
First the emotions, I addressed each one...

Emotional Layer What Source said to it

Sadness “I trust that I need to be sad sometimes.”
Loneliness “Embrace those lonely days. They are still good days, too.”
Sadness “Don’t suppress it.”
Loss “You still have good memories.”
Fear “There is a way around it.”
Anger at being left alone “Embrace it.”
Feeling unloved “You are loved.”
Loneliness “It is good to be alone.”
Lack of trust “It is not necessary.”
Anger at not being listened to “Not worth it.”
Anger that is like depression “Cool off.”
Doubt “Trust yourself.”
Failure “Not worth feeling the guilt.”

Going thru the journey revealed that my ultimate "happy" moments are with my 5 year old self at my "core" where I feel joy... that was interesting since I can barely remember anything from my childhood...
Happiness, the 5 year old you = your experience of Source

After I addressed emotions I went to my "campfire" to address my 12 year old me- when things seemed to have some tumultous memories... I was asked to call on a mentor to provide words of wisdom to my 12 year old me... so this is what came out of me:

Your mentor’s words of wisdom for the younger 12 year old you: “Practice more forgiveness. Let go of anger. Speak up when you are uncomfortable. Learn to use your own voice. Don’t hide your feelings. You don’t need to be passive. You can be strong.”

Your mentor’s words of wisdom for the present you: “Be patient. Be kind to yourself. Trust others more. Appreciate the time you have with people.”

Final words of wisdom from mentor: “Trust your gut.”

I was asked to look towards the future. (I dreaded this because thinking about the future sort of sucks in my opinion most of the time. A fact with me as a cancer patient... I've read the book- The Journey by Brandon Bays and knew everything that was coming through this process) Here's what I thought:

Future Pace

1 day: You feel happy.
1 week: Feeling confident, trusting.
1 month: Issue disappearing.
6 months: Issue lessening. Happy, optimistic.
1 year: Proud of yourself. Issue gone.
5 years: Grateful for every minute I am alive! Confident.

It was an interesting process.
I'm not sure if I'm sharing too much of myself here but... that's part of my journaling, so be it.

The practitioner had these questions as follow up a few weeks after the process occurred:
1. How do you feel the Journey has affected your life, regarding your intention or issue?
The Journey helped me confirm what I was concerned about addressing and dealing with... it helped me refocus my energy/intention on positive moments and celebrating life.  I'm not necessarily sure how it has helped my issue but I know over the past month I'm sleeping a bit better and am able to walk away from frustrating situations in a smoother fashion.

2. Since we last communicated have you noticed any other, possibly unexpected changes in the way your body functions?
  • Eye sight
  • Eating habits
  • Digestive functions
  • Stamina
  • Energy level
  • Breathing patterns
Digestive functions have become better.
I brought qigong back into my daily routine which has helped my breathing patterns immensely.
I haven't seen as much of a change in my eating habits... 
Eye sight isn't much of an issue besides needing sleep more often than not and my eyes being tired from such.
Energy level had been increasing but I've been dealing with some ailments recently that have lowered my energy quite a bit...
I'm sleeping more/slightly better than I have in ages.

3. Since then have you experienced any physical or emotional symptoms of detoxification or release?
I was a bit more emotional over the past month and allowed myself to experience emotions, to not hold back tears, etc. It was a relief to allow myself to cry and release. It was also good to address other emotions as they hit me. I was much more emotional when I had acupuncture than I had been in the past and appreciated that detox.
4. Have you noticed any other changes in your emotional experiences? Perhaps in the way you typically react to challenging situations? Possibly in the way you feel about challenging people, or people close to you?
Not too much. I've always been pretty neutral dealing with challenging situations but I did switch to breathing deeply recently when dealing with some frustrating online issues and reminded myself that over the course of a week what was happening wouldn't be that important. I haven't really challenged people close to me as of yet... I'm simply making sure I'm trying my best to communicate my feelings and what I'm thinking and not letting anything get bottled up.
5. Is there anything else you would like to share?
Grateful for the journey. I'm looking forward to trying out The Journey process with a friend in a recipriocal fashion in a few weeks. It is cathartic and helpful for dealing with life... Thank you!

That is my recap of experiencing The Journey.
It was interesting.
Certainly brought up some issues. 

L'Shanah Tova, Happy New Year, to my friends celebrating. I'm approaching this new year with as positive an attitude as I can have and doing my best to celebrate what I'm able to do, not look at what my limits are holding me back from and just enjoying life. 

Thanks as always for journeying with me...

Tuesday, September 1, 2015

Taking my time

Now I bought a little bit... think it would be quite bitter for juicing.
Must use soon! Must find a way to use this! :)
Well. I'm done with chemo for the first time in the US. So Debbie, what's different? Not too much.
1. Avastin only. It provides me hope. A little bit. Until I can get some type of immunotherapy- no I'm not giving up. If you didn't notice by now, I'm a pretty persistent bugger. :)
2. They are not only vampires collecting my blood at the beginning of a treatment, they also enjoy collecting urine. Seriously, what's with the urine collection? Every time? After insurance not covering any of those tests for over a year, I have this foreboding feeling when they are administered now... but I honestly was reassured to have a blood test after 2 months free of them.
3. They take stinking FOREVER. Seriously. Even though I had a wonderful companion (thank you Joyce, so grateful) with me who helped me be distracted, it took over 1 1/2 hours to get going and administer the Avastin. Avastin only takes 30 minutes and doesn't need any pre/post drugs (hooray!) and so the time it took for everything else really was dreadfully long in comparison to Hong Kong. Made me appreciate that private clinic that had a blood lab and pharmacy right there taking care of everything efficiently.
4. They didn't poke me twice. Seriously. I found this to be so pleasant (as pleasant as getting a needle in your arm can be...) so pleasant to be set up with the needle in my vein and a blood draw from there vs. an initial blood draw in another location. Hmm.
5. The US does a cheaper set up with the needle. I don't mind it. Just different. Less firm. Do you notice? Seriously, dinosaur bandage. And when they finished and pulled the needle out they gave me a pink heart bandage. Hah. I'll be entertained. One nurse said, "Oh, we only use the special ones for you guys." Ok. Made me chuckle...
Laughing about the dinosaurs...
6. 3 weeks in between is going to be an adjustment. Not complaining. Annoyed that I have to go a day or so before to talk about how I'm feeling when an email would simply do. I did talk with the nurse about that yesterday. Waiting to find out about location/next appointment, etc...
7. Side effects? I'm stinking moody. I wondered today why I was so low and I've decided... Avastin. I also am having terrible sleep and am off from that. Starting a new job and that learning curve of meeting new people is also something that throws me off. I have a few friends at the new school but there's just so much darn "unknown" that's in my life at the moment... working on smiling. Going to get up earlier so I can do qi gong each morning to lighten my mood. It worked before!
8. Other side effects? Meh. My poor stomach. It is not happy. At all. But it isn't too scary. Shall see. Also I noticed a tiny nose bleed on Monday but nothing since... I'm still having those annoying hot flashes (I know they're NOTHING in comparison to what my friends go thru)... thank goodness for layers. Grateful I'm not getting to the fainting stage. Watching and pacing myself carefully.

I'm a little distracted with work. Have a feeling that my posts might be stretched out and then on chemo weeks I will share more...
Here's what I've found useful/fascinating lately online:

I liked this yoga routine- one you can do in bed, going to try it out, so simple and easy:

Appreciated watching this 60 Minutes report, my mom shared- thanks as always mom:
Using Polio to kill cancer- what a fascinating possibility this is. I watched 3 videos through this link.

Hope for the future: messing around with MicroRNAs:

Hmm, this is quite the claim:

Thanks as always for journeying with me...