Showing posts with label tomotherapy. Show all posts
Showing posts with label tomotherapy. Show all posts

Thursday, February 12, 2015

Day by Day

I'm here.
Appreciating life.
Taking things day to day.
Grateful for thoughtful conversations, fun times, teaching and reading aloud time, learning opportunities...
Finding places to laugh, even in serious moments, even if I'm only laughing inside.
Happy to have a holiday for more time to rest and recover, spend time with family, relax with my dog.
Looking ahead and planning my future a little.
Staying positive, hopeful, and smiling.
Ignoring pain for the most part, thank goodness for a high tolerance.
Making others smile.
Making kids laugh.
Appreciate every day.
I'm here.


Just taking things quietly at the present moment. Hitting the halfway mark on Monday with radiation was a relief. Did a loud WOO HOO when I got off the Tomotherapy table. Knowing at this point I only have 12 to go is bearable but also a little intimidating. Not letting myself fret but have medicine on hand as side effects could rise. Taking things as requested by my doctor.

Attended an essential oils workshop, learned a little more, appreciated being around kind folk of CanSurvive (CancerLink support group)... Was slightly disappointed that nothing really related to cancer in the workshop, more just about the basics which was just fine, also had my hopes though...  Looking forward to appointments I've scheduled in the next week and also those days with absolutely NOTHING planned. Happy to have that gift of time coming.

Coughing still sucks but I've mostly found my voice again and can enjoy classes.
Pain still is there like a little tiny brick nestled in between my lungs but not as terrible as I expected.

Friends have been giving me rides to treatment, so grateful. Going in and not being exhausted and out of breath is a gift.
My sister's blog posts are a little punch of energy that I think about when the CT scan goes at the beginning of every treatment. Then I silently talk to the radiation and the cancer cells and my heart, lungs, etc. about how things will get better, how cancer cells can just let go and die already, and more. Relieved to have breathing exercises that stop me from coughing during treatment.
Proud of my kiddo who had an art exhibition with all his classmates. Appreciated getting to listen to him and his classmates talk about what they learned with their unit of inquiry. Proud of my boy for his enthusiasm and excitement in learning- my little smart sponge.
Listening to one of the best audiobooks I've enjoyed in a while- As You Wish- Inconceivable Tales from The Making of The Princess Bride by Cary Elwes - brilliant... but I'm quite partial to The Princess Bride...

Happy days to all.
Thanks for journeying.

Appreciated this flower during my recess duty...
blooms in the middle of winter here in Hong Kong.

Wednesday, September 10, 2014

Answers... well we asked for them.

Less than a week ago, my husband and I walked away, frustrated, from my oncologist's office. We had more questions than answers. Today, we received some answers... but we certainly didn't walk away from the appointment happy or relieved. Honestly, I'm overwhelmed. My wonderful husband is... quiet and contemplative and supportive and... surviving too...

I attended my first 'CanSurvive' meeting today (cancer support group) that included a lunch with many friendly strangers who were catching up after months apart and then going to a lecture with a counselor who talked about how to manage negative thoughts and how to reshape and redirect them. Appreciated the lecture and was frustrated to have to leave early for my oncologist appointment... Think part of the frustration was that I knew answers were coming from my oncologist.
Here's the YouTube video I took note of when I had to leave - shared by the counselor from the Well Cast Channel: interesting approach to reshaping thoughts... think I'll watch more videos from this channel, a little disappointed that it isn't quite appropriate for primary school since I like some of the topics...




I'm mentally working through the chemotherapy plans... new more aggressive plans because unfortunately my prediction was right, my oncologist assessed the lab results and confirmed that the cancer I have now is metastatic cervical cancer in my lungs. He has a much more aggressive plan for chemotherapy than he had when it was the lung cancer diagnosis. Now I have to go for chemo weekly with a rotation of different medicine each week on a four week cycle. I will lose my hair, no doubting that now, scarves are my new focus instead of hats, shall see. This protocol can have many side effects. The costs of all the chemotherapy is overwhelming. I'm checking in with insurance to see what will be covered.
I considered going to the local hospitals in Hong Kong now that I finally have an official diagnosis and a referral letter from my doctor as of today. Unfortunately, getting an appointment could take 2-3 weeks and getting treatment could take 1-3 weeks later... which isn't very promising. I'll still look into the local treatment, even just for radiation treatment, shall see.
My oncologist wasn't very encouraging about the government/local hospitals proceeding with the protocol he has created for me. He thought they'd prefer to do radiation first which he did not recommend. This means a lot to me because...
1. I want to survive, recover, and be in remission.
2. I can't imagine putting off treatment for another month when my oncologist wants to begin next week (I just hit my 2 week mark after having surgery, can't believe it will be just 3 weeks and then chemo treatment begins but as a friend said to me, those Hong Kong doctors do not mess around!)
3. I trust my oncologist. I do not believe he would exaggerate or dissuade me because he wants my business. I believe he wants the best for me.

So, will talk and sort out finances and begin chemotherapy sometime next week.
Looking forward.
Staying strong.
Overwhelmed but dealing with emotions as they roll... and they will... and that's ok...

Thinking that I would like to focus on humor a little more. Find funny videos that make me laugh, comic strips, comedians... anyone have a favorite? I adore comic strips, subscribe to many online... almost as obsessed with them as I am with graphic novels.

Appreciated one cancer survivor's story in the book Radical Remission which included her and her daughter making time at the beginning and end of the day to find ways to laugh. I love to laugh. My son does too... perhaps that's something we can do together for a new routine. He already thinks I find the most awesome videos to share with him... The librarian in me is already mentally figuring out how to organize this...

I am looking into comedians on YouTube, here's the first one I'll be watching: - Humorous guy, I like his slightly twisted approach... for adults though.

Also, I like the idea of creating one of these: http://www.comedycures.org/stuff/make-a-joke-book/ vs. making a get-well-soon card for classes, nice idea... productive, positive idea... :)

Grateful my mom suggested I reread that chapter in Radical Remission... inspiring. Good for redirecting my mind to the positive and thinking about humor.

Thanks all for keeping up with my journey. Getting through...

Thursday, September 4, 2014

More Questions than Answers and Dear Body...

Dear Body...
I find this to be an interesting practice for anyone. Many might be bitter after an operation. I remember after my first operation, I looked at my long scar and sighed, told it, I know you'll recover, I know you hurt now, this had to be done, I'm sorry. *I barely see this scar anymore. The pain has subsided, especially after a few months went by from radiation treatment.
After my second operation, I looked at my little c scar and sighed, told it, yep, you're there, you look a little different but there's more coming with radiation... I'll keep putting stuff on you for healing. Said the same to the "S" scar under my arm from the third operation where lymph nodes were removed and checked.
After this past week's operation, I looked at my side and imagined what was coming. I have bandages all over. I know there are three scars. I know two were cut through my right breast which already went through enough with a lumpectomy and radiation less than 6 months ago, poor thing. Goodness knows how the scar tissue will feel this time. Goodness knows how radiation will make me feel this time beyond burned and tired and wired- will it impact my throat? voice? give me dry mouth? ruin my gag reflexes? give me sores so that it hurts to eat? What about chemotherapy? Oh vey to the imagination I have for reaction to that. I've watched the videos that have doctors saying that you can still work during chemotherapy and you can also still stick to an exercise regimine that both will combat fatigue... shall see what I'm able to do. I'm hoping to buckle down and work on my writing, look at this as a gift of time... sort of.

So, for now... here's my Dear Body:
I forgive you for being prone to multiplying cells that shouldn't be in me. I forgive you for being sensitive to food. I will accommodate you, care for you, and try my best to nurture you with patience, positive energy, and alternative treatments to balance out all this wonderful life-saving yet reactive modern medicine.

What happened this afternoon:
The Dr. appointment today was frustrating. My love walked with me away from the Dr. and we agreed, we were leaving with more questions than answers, that's annoying. I dislike that lab technicians are now giving conflicting analysis of biopsies and we have to wait another week for further decisions on treatment based on more lab tests... Right now they're thinking that I don't actually have lung cancer but a stray cancer that bounced up to my lungs from my cervical cancer... so cervical cancer that didn't just spread up? It just is there in my lung and lymph node? What if I had been treated with chemo back in November when I was first diagnosed? Could that have helped us avoid this exhaustive experience? Yes, I ask these questions. Of course I can't change the past but realistically they run through my head. Plugging my way along, working on looking toward the positive but accepting that I'm a little angry as well.

Oh well. Patience has brought us along this far... I do know now that my doctor plans to first give me four rounds of chemotherapy every three weeks and a month of radiation second. He mentioned that he might have some chemotherapy drugs that I'd have to take to make the radiation work well. They won't do anything for at least 2 more weeks so I can recover from surgery... Gearing up mentally for whatever comes...

Here's where my thoughts on "Dear body" above reflection came from:
There was a sweet girl, think in 2007 who started a meme called "Dear Body":
Without cancer example:


Today I came across a different "dear body" video for someone who dealt with cancer, chemo, radiation and such and was a survivor. Loved her messages to herself. I really honestly could care less about weight loss, in fact I'm trying to gain weight on this limited food protocol I'm on so that's beyond why I was touched by this video... I just appreciated self reflection and positive messages within both videos.

After cancer example:

Staying strong and positive but riding the waves through this journey...

Friday, August 15, 2014

Survivor Book Inspiration

My Life.... what do I celebrate with?
reading books...
Diagnosis? 2 cancers within 7 months? = wake up call.
What did I do next? (after family, friends, and medical plans?)
Read. (I was on bedrest for four weeks, didn't want to just watch the screen.)
Radical Remission: Surviving Cancer Against All Odds - Kelly A. Turner, Ph. D. - inspiring, packed with fascinating research.

You Need Humour with a Tumour - Reflections on a journey with cancer - Annmarie James Thomas, Flye/Jeremy. - this book broke my heart.

Kicking Cancer in the Kitchen: The Girlfriends Cookbook and Guide to using Real Food to Fight Cancer by Annette Ramke and Kendall Scott - some delicious recipes, inspired stories as well.

The After Cancer Diet - How to life healthier than ever before by Suzanne Boothby - opened my eyes... activated my food/life changes...

Cancer Vixen: A True Story by Marisa Acocella Marchetto - absolutely loved this graphic novel about dealing with breast cancer/treatment.

Crazy Sexy Cancer Tips by Kris Carr - working my way through this book now. Love the clips I've watched from The Oprah Show from Kris Carr, quite the inspiring survivor.

The Silver Lining: A Supportive and Insightful Guide to Breast Cancer by Hollye Jacobs RN MS MSW, Elizabeth Messina - Inspiring blog, such a positive person...

Reading soothes my soul.
I've quietly read these books when I'm a very public reader. Some weeks of the past year were very low on books read in my kidlit world because I was more focused on cancer recovery books...
I've changed my diet, lost a ridiculous amount of weight which worried me, and tried to deal with all the complications of operations and radiation by reading how others dealt... reassuring to not feel alone. Inspired other times by survival stories...

Bravery versus survival with grit

So, say at 40 your body goes to hell, I say, to hell in a handbasket.
Here's my journey from being a sickly one to struggling to rise above.
Often I've heard, "you're so brave..." my response is a respectful smile or thank you or combo of the two. But honestly, I don't think I'm all that. I just deal, try to stay positive, and hope to have a little fun along the way.
Having a doctor say "uh oh" isn't what you want to hear five months after a radical hysterectomy and more and a round of radiation treatment for cervical cancer, but my response of laughing saying "No, you can't find a lump and then choking up with a 'that's not funny' didn't calm me down or stop my doctor from finding a lump, very small mind you, but still cancerous in my right breast.
I'd say I'm ridiculously lucky.
I have a sweet healthy boy, a fantastic, patient husband, a wonderful supportive family, a job I'm passionate about.... loads that helps me pop up in the morning ready for another day.
Cancer? Pray for only radiation. Pray for it to be small. Please no lymph nodes. No chemo? I know I'm incredibly lucky.
What started this?
Good question.
Stress? Perhaps.
Poor diet or food that isn't healthy? Maybe.
Lack of sleep? Highly possible...
Luck? Not sure...
But I'm surviving with grit.

Positives about Radiation List

My Positives about Radiation list- round 2 of radiation, breast cancer treatment this round.
(Ok, they aren't all positive...)
I posted about how I had to have radiation after fighting cervical cancer, 8 months later, I was back in for radiation treatment again/Tomotherapy after having a breast cancer diagnosis, lumpectomy, and lymph node surgery...
Here's what I listed for this round of radiation treatment:

1. I now have 3 tattoos, quite tiny (as a pinhead) but they're tattoos.
2. It isn't chemo.
3. If you want 1:1 attention, fabulous, you sometimes receive 4:1 attention.
4. It isn't chemo.
5. You see a doctor weekly, well, that isn't fun.
6. You're provided with meditation time.
7. You receive special messages about staying still.
8. You're exposed to new clothes when the doctor says "no bra, built in support shirts"
9. You get to see what people do when radiation is on- run quick.
10. You can feel like the bionic woman.
11. You wear a lovely uniform each day.
12. It is short.
13. 16 days can feel like 4 months.
14. You are very aware of your skin.
15. You have a daily appointment each day that has a good strong excuse for leaving work.
16. It isn't chemo.
17. You can focus on keeping positive.
18. You can make new jokes and have a medical audience (in my case Chinese though...)
19. You know there is an end in sight.
20. It is only one way to help yourself.
21. Since v-necks suck with burns, you experience a change in wardrobe, again.
22. Many people pay attention to you, are concerned.
23. Excuse to buy new shirts.
24. Twinges make me more aware of my body as the radiation treatments progress...
25. Food changes = certainly in the right mind set.
26. Discover new restaurants.
27. Discover new grocery stores.
28. Watching healing process- nerves working better, skin not freaking out as much.


Tunnel Time: Tomotherapy

Tunnel Vision:
So, after recovering for almost four weeks from the radical hysterectomy, the doctors referred me to a specialist who said I need to have six weeks of Tomotherapy (radiology).
I'm around 9 days into Tomotherapy now and can't stand the experience but appreciate that I'm fighting off any other evil cancer cells that might be hiding out...
One of the nurses said to me "looks like you're used to the routine now" and I quickly said to her "it will be a habit I'll be happy to quickly break when the time comes.
They actually chuckled. It is a relief when people "get" my humor. I had a conversation recently with my mom about this. She is dealing with a medical professional who is someone who never gets her jokes... somewhat makes her uncomfortable.

So. In the tunnel. What is Tomotherapy and what happens to me while I'm in treatment?
I have to have Tomotherapy for 30 days. *Before I started treatment I had to have a CT scan, make a "cast" of my body so that I lay down precisely the same way for every treatment, and an MRI. I HATED the MRI, such loud noises, my ears were ringing afterwards!

I have to go all weekdays, mostly at the same time every day.
The time it takes to have a tomotherapy session is right around 20 minutes once I'm in the tube.
First I wait.
Then I change into a beautiful *not* set of pajamas and flip flops.
Then three to four people lead me into a room, get me to hop up onto the platform that holds my cast, and then begin by scooting out of the room.
They get the CT scan for around five minutes.
Then the bed/platform pulls slightly out when the computer calibrates.
I hear a click clack buzz from the top of the machine and then it clicks as the platform pulls back in.
I hear clicking and buzzing and know that the machine is in action for the next fifteen minutes.
After the treatment completes, then many people, once even eight people, come into the room and quickly scoot me off so that they can get ready for the next patient.
I change and try to catch a little green bus back to my area, catch the MTR and get home just in time for dinner...

What scared me? The side effects. I'm only at the beginning stages. Unknowns are no fun. Shall see.

Video examples of Tomotherapy:
The first video I watched about Tomotherapy:
Then I  watched this live video:
Talk show introduction: with a decent explanation:



Listen, seriously, listen to what your body is telling you

I'm grateful that I've had arthritis, juvenile rheumatoid arthritis, since I was thirteen. It has made me quite a neurotic person, tuned in to my body. I've been off medication for the arthritis since I was 18. That's when I almost had an ulcer from the NSAIDS that the dr. prescribed. I had orthoscopic knee surgery at 15 and found the recovery process quite frustrating and limiting.
So, neurotic. Yes.
This isn't a pretty sight following for gentlemen to read, sorry. Close and move on to a different blog.
Thanks. Now on to listening to your body.
I've been taking chances, risks and going on adventures for the past year and a half since my family decided we'd be risk takers and move to another country. This was due to a job opportunity that I had and a huge leap of faith that our family had moving overseas.
I've worked hard to enjoy and adapt to a new country and had a steep learning curve adapting to a new culture.
So. Listening to the body.
Here were my body's stages of saying, something is really wrong:
1. I was really fatigued, a lot in June. Couldn't figure out why.
2. I started spotting a little bit in June and worried.
3. I had an extra period at the end of June and was frustrated.
4. Went to the dr. after that and she said it might be fibroids. She did a pap smear- it was clear.
5. I went on a family week long adventure that included fun hiking, scootering and more... and continued spotting.
6. Quickly we turned around and went on another family adventure to learn kung fu. Part way through the week I started my period 2 weeks early.
7. I went back to my doctor and she sent me to get a transvaginal ultrasound that revealed that I did have fibroids. Discussed with doctor about options, she suggested an IUD which I considered.
8. I went back to work. Within a week, I started having the heaviest, scariest period I ever experienced. My body was screaming that something was wrong.
9. I went back to the doctor who put me on hormones to try to stop the bleeding..
10. The bleeding lessened quickly. Two days after taking the medicine a finger on my right hand started hurting terribly. The next day, the other hand had a finger that hurt. Then my wrists and shoulders started hurting. I decided it was the medicine. I went back to the doctor and scheduled the procedure to get the IUD put in. I also got permission to quit taking the main hormone medicine but continue the other so that the bleeding didn't pick back up. I was listening to my body, it was still trying to tell me something was terribly wrong. I went to three sessions of Chinese Traditional medicine treatment including acupuncture and mustard seed packs on my wrists and shoulders, no alleviation of pain until I got off the medicine.
11. I went to a specialist who quickly scheduled the IUD procedure for that Saturday. I went to the procedure a little nervous but hopeful that this would address the problem.
12. The procedure went fine until the doctor who was using a video scope noticed a large growth on my cervix. He took a biopsy and told me immediately following the procedure that he didn't put in the IUD because he needed to find out more about the growth.
13. I waited over a week to get results, that was terrible. I called, the doctor was out and then wanted to schedule an appointment to talk in person, emphasized that it wasn't a worry. We went to a family weekend fun trip which I'm still grateful we did... last time I had energy for excitement.
14. My doctor met with my husband and I to explain that I had cervical cancer, in what he suspected was early stage 1. He was concerned with how large the growth was and suggested I see a specialist. He explained that pap smears and a transvaginal ultrasound wouldn't reveal anything about cervical cancer and shared that this was a really lucky find.
15. After juggling doctors to sort out what would be covered by insurance, I went to a specialist... who sent me to another specialist within a days time. That specialist scheduled a radical hysterectomy with some lymph node removal as well.
16. The specialist warned me that I might need to get radiotherapy after the surgery since I had such a large growth.
17. The surgery went well. My employers were generous, kind, and supportive and I was approved for paid emergency leave.
18. I've been off work for four weeks, recovering from the surgery. Quickly after the procedure, my doctor came and confirmed that he wanted me to see a specialist and have radiotherapy...
19. I went to a cancer radiologist who decided to treat me with six weeks of Tomotherapy sending radiation to my entire pelvic region.
20. This radiologist gave my husband and I heart attacks when he pointed out that I have a rare form of cervical cancer with no known confirmed treatment but with a 40-50% survival rate without having radiotherapy. No choice in our opinion, getting radiation treatment. There was slight discussion of getting chemotherapy as well but my other doctor said "no" quickly since I had a biopsy of all my lymph nodes and had no signs of migration of cancer cells.

So now... still listening carefully to my body and dealing with Tomotherapy. (Radiation treatment, 30 days, Monday-Friday for 6 weeks.) Not fun but important.