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.
Seriously.
I've had trouble swallowing for weeks now. Keep saying I'm having trouble. Had nausea because of it I think.
So.
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.
Blech.
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.
So.

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.
I ATE FOOD.
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...

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:

Campfire

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.

Well.
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!

So.

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...

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!

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...