Showing posts with label Grateful. Show all posts
Showing posts with label Grateful. Show all posts

Thursday, October 8, 2015

5 appointments, 3 days, sheesh

Gonna miss my kiddo when I go to a conference for the weekend.
Just finished a good book with him and quickly are going to shift
to a new one... Haven't missed a storytime with him in a while... Even
the days when I'm coughing and unable to read much, we still have our
time together...
So. Yesterday I had to go get a PET scan done and I took a sick day since I knew I'd be useless at work before the scan since I had to fast for it.
The scan is still as isolating as it is in Hong Kong. Similar everything. Scans suck a little more now since I don't prefer to lay on my back since pain is ridiculously bad after 5 minutes. Having to lay on my back without taking tylenol? Very worrisome. Got thru it all just fine. I'm good at staying still. (Guess I have a little practice with 3 rounds of radiation!)
While I was isolated for an hour letting the radiation seep thru my body for the PET scan, the nurse pulled a miracle and scheduled a brain MRI a few hours after the PET scan.
I hated that MRI. I don't use the word too often but MRI contrasts suck totally. First I'm in a head cage and have to hold still while things bonk, buzz, whir, and shake all around. For 25 minutes. Then they injected a contrast into my poor overused vein and walked away. Nope. Not happening. Had to hit the panic button so that I could sit up and deal with the nausea side effect from the contrast, yuck. Got over it. They said it happens to those who are lightweight... Yup, that's me presently.  15 minutes more of laying still. Had earplugs and headphones on. Once in a while heard classical music. Hmm. Not so fun. Got thru it.
So I had to get both tests done for the new oncologist I'm seeing next Monday.

Today was interesting.
First I met the gastroenterologist and discussed my swallowing problems with him. Why not just schedule the stinking procedure? I'm not sure. Oh well. Next Thursday or Friday I'll be going thru an hour long procedure where they'll possibly put a stint into my esophagus. There's consequences, of course. It could slide. Go down into my stomach. It will likely make me hurt for 2-3 days as the stint expands. He only wants it in there for 6-8 months. Said it can create problems if it is there longer. Said that I have to sleep at an angle because I could have really bad acid reflux since there's no barrier anymore once the stent is in place.
Found this brochure about what to do after the stent is placed...
https://www.bostonscientific.com/content/dam/bostonscientific/endo/general/gastro-specialty/eso_stent_patient_nutrition.pdf

Next I met with my oncologist. Had good conversations with her. We went over the Foundation I results and she found that there was a immunotherapy drug that my tumor reacted three ways to "genomic alterations detected"... so she got permission from me (of course) and is now applying to get it for me through compassionate care.
The immunotherapy drug is called Temsirolimus.
http://www.torisel.com/how-torisel-works
I know it is normally connected to renal cell carcinoma. It is not on my oncologist's normal radar. She said it was very good that we had the Foundation I testing because it brought to light a drug that has a little promise. It is in a 2nd trial trying out treatment for gynecological cancers/cervical cancer and has shown promise. I'll take that hope.
https://clinicaltrials.gov/ct2/show/NCT01026792
Shall see how long compassionate use application takes. I'm still seeing the new oncologist on Monday and also another oncologist on Thursday.
We also discussed other things, liquid versions of medicine, especially tylenol... Unfortunately the Tamoxifen I take is liquid form with the flavor of licorice added in, YUCK. I HATE black licorice. I HATE the seeds as well... So I'll crush that pill.
Handed her my paper work for my Advance Directive... it came in the last Hong Kong shipping package... Good to get it sorted out and make sure the hospital knows my wishes.
Grateful a friend is helping me with paperwork and such... I'm in the process of gathering what I've already got... wills, etc.

Eating is such an issue.
Had to fast yesterday for the PET scan and afterwards met my mom and had a delicious sandwich. Unfortunately around 20 minutes into my slow eating process things got... blocked up and I couldn't figure out what to do. Had to lie down at the restaurant in a booth. Blech. Took around 25 minutes or so to recover but felt like crap and barely had any interest in dinner. Needless to say when I weighed in today I'm down to 119.5. :( Very unhappy about that but will continue to try. I'm drinking protein shakes thanks to my husband making them for me in the mornings. I'm slowly going about the days. Barely able to drink a mug of warm lemon water first thing in the morning. So odd to adjust to. But I'm trying. Dinner time is a little better. Today at lunch I had delicious soup but could only get in the broth. Sigh. Shall see. Got noodles, a little chicken and more noodles in me at dinner tonight. Better than I've eaten for a few days. Thanks mostly to my mom's cooking!!

Have another Avastin infusion tomorrow. Grateful my sister is going to be with me. I love my family. So much. I'm so grateful to spend time with them. So happy I'm close by now... Makes it so apparent to me how much I missed them last year... and how many people helped be my family in Hong Kong last year. I miss those beautiful, supportive friends...

Went to the best yoga instructor ever's class yesterday. Appreciated her advice on how to help my back, throat and eyebrows. Working to not raise my eyebrows so often. I never noticed how much I use them til now and she pointed out that it adds stress that's unnecessary. Also learned about some chair poses that should help me, give me more energy... Boy I've missed her classes. Happy to sneak in one again...  after the PET and MRI it felt good to do a healthy action.

Gotta do a crazy face too mom! :)
Thanks as always for journeying with me...
Finding promise.
Holding hope close to my heart and being patient, very patient with myself.

Friday, June 12, 2015

Clean Scan - Support me please

Enjoyed visiting a Cat Cafe with my friend...
blogging on Styling Librarian about it in a few weeks.
I believe...

So.
I'm having a PET scan in a few weeks. Then I will have results a few days later. I believe the scan will be clear. No cancer. I need all my friends, family, loved ones to also have this thought for me. Let's take advantage of positive thoughts.

I'm feeling much better than a few weeks ago. Taking things day by day. I will be well. I am healing. It will take a while and I'll be a little different than I was before but I feel good about the future. There is so much to live for. So much to hope for. 

I want to see my son have his Bar Mitzvah. Be there for family celebrations. Watch my son graduate from High School. Attend college. Celebrate anniversaries and life events with my husband. Have new adventures. Enjoy time with friends and family... Continue a career that I'm passionate about... I have too many good things in my life and know the future is bright.

So.
Clean scan. It will be clear, all these things I've done for almost a year have been successful.
If you talk with me about the scan, focus on the positive. Believe it will be a clean scan with me.

I feel lucky because...
I can fully breath even with part of my lung removed.
My gum has healed and I might not need surgery for the area I was concerned about.
My fingernails are growing out and looking a little bit healthier.
My hair will grow back soon enough.
My energy level fluxuates but I can enjoy work without feeling like I'm going to collapse.
My stomach is feeling a little better.
I have job prospects. Shall see.
Family are excited for us to return home.
Our friends are excited for us to return home.
I have an oncologist and other team members lined up to help me once I'm home.
Things are somewhat falling into place with paperwork and moving details here. I've got good support as needed as well...

So much to be grateful for...

So.
Clean scan.
Think it.
Believe it.
Have faith and hope for me.

Thank you as always for journeying with me... grateful, grateful, grateful...


Saturday, May 9, 2015

Last Day of Chemo

Actually smiled.
I'm keeping faith.
Faith that this is really my last day of chemo.
Faith that the exhausting, expensive, emotionally draining experience over the past 10 months has successfully helped me rid cancer and extended my life. I'm continuing positive thoughts, deep breathing, qigong once or twice a day, and all the other things from oil pulling to essential oil treatment and I really do believe this is helping me. I've been dealing with pain in my side and more recently in my stomach and doing the deep breathing and acknowledging the pain has really helped me actually ease the pain.

Found out I have the stomach bug which helps me understand why I had stomach pain. It is difficult to distinguish sometimes what type of pains I'm dealing with. Good to have a solution, rice water to drink, and meds to take.

Happy moments and a feeling that an anvil has been lifted off my shoulders.... that's how I feel after finishing the chemo experience.

Hope this view is done in my life.


Author/Illustrator Debbie Ridpath Ohi made this for me.
As sad as I am to be wearing hats again,
I feel like this picture represents me.
A wonderful friend mentioned to me that some of my random shares in these posts have helped her out with her own medical needs. Hooray. That just makes my day. Touched by all wonderful people I'm keeping up with on here, Facebook, and other places...

Here's what has inspired me recently:
I LOVED the idea of these greeting cards created by a former cancer patient... this woman is an inspiration:
I'm grateful a friend sent this my way (thanks Candy!) and I agree, each person is different and it is really challenging to know what to say to someone who is dealing with cancer in their life.
Now, I do not refer to my illness as a journey, my journey is celebrating life itself every day. It has been interrupted slightly by this darn cancer but I am still celebrating what I appreciate, spending time with those I love and care about, pursuing my passions, and not letting go of my dreams...
http://www.npr.org/blogs/health/2015/05/07/404976537/are-you-sick-and-sick-of-hearing-everything-happens-for-a-reason?
Here's lovely card examples:

My beautiful qigong teacher sent me a link about gratefulness. 
Really appreciated this link and this song - 
Grateful  - A love song to the world: http://www.karmatube.org/videos.php?id=4460




I watched a video on Positive Psychology, enjoyed watching, most of what I know but I appreciated watching the research reinforcing it. (Shared by wonderful colleague at my school...)

I've added the mantra from this meditation link/video to my daily practice with my deep breathing. Really helpful reminder every time...

Moving ahead, taking care of myself... thanks for journeying with me...