Saturday, August 30, 2014

Random thoughts about activity in recovery

So Debbie, what do you do after part of your lung has been cut out, your cancerous lymph nodes were mostly removed, and you're stuck in recovery at the hospital?
Visit with friends.
In person.
Through Skype.
Visit with family online and thru Skype.
Call people randomly and surprise them, take advantage of my time.
Read books.
Glance thru magazines.
Walk many many laps around this mini-circular floor- got done with 10 laps today, up from 4 yesterday.
Talk to my surgeon, oncologist, nurses, and physical therapist.
Practice inhaling and meditating.
Start feeling the stitches in my side beyond just the annoying drain.
Learn that the surgeon cut off pain medication without warning this evening... and discover that I really need that pain medication. (It is honestly simply extra strength tylenol. It kept the pain at bay pretty well though.) *And speak up for myself after getting a little upset that the pain was increasing-- not my fault that I hurt from stitches, a tube sticking into my side, and surgery affects and need medication- I know this. Received lighter prescription that helped. Will chat with surgeon in the morning about this lack of communication.
Become a little anxious about what is leaking out of me.
Monitor and breathe easier by the end of the night because there is much less than there was before.... which gives me hope that the drain will be removed soon.
Watch many many shows and a movie.
Then distract myself with many online articles, blogs, and posts about cancer.
Oh yeah, and sleep here and there. 5:30 am check on vitals every morning feels like a normal routine now, hah.
Appreciated this video. Helped visually explain about cancer cells, treatment, and more in quite simple terms.

Still need to return to reading Radical Remission, it is inspiring and hopeful and has some practical ideas that I've already been able to start putting into practice.
So... trying to distract myself, stay positive, and get thru the day one little step at a time. Haven't been completely feeling happy or terrific all day but overall, I'm surviving and thriving, grateful for all family and friend support, it is keeping me going.

Thursday, August 28, 2014

Post Surgery The Good, The Not Great and the Breathing...

It happened.
My surgeon came to my husband and I post surgery to talk about the results.
There's good. There's not great. There's hope.
He showed me a picture of my lower right lobe lung and pointed out the cancer. Also the lymph node that he took out. Both were sitting on a sterile tray. The lung looked happy/red/pink and the cancer area looked like a bright blob of yellow. Disconcerting that my body does this to itself.

What a waiting game!
We headed up to the surgery but when we got set up, the anesthesiologist wasn't there, he was stuck in traffic. Now, I get really sensitive on the ride up to surgery. I get stressed. Tears threaten to spill. I try to joke and refocus. So when the lovely nurse came to tell me about the delay she patted my arm. I flatly told her that she was going to make me cry if she continued to be kind and that I'd be better if we simply talked. So we did. For 20 minutes while the anesthesiologist showed up and set up the iv and more. It was the best thing to simply have a distracting conversation. Thank goodness she listened. And talked. Quite grateful.
She was shocked that it was the third time for me to be in that operating room in less than a year's time. I'm a little shocked still as well.

I was surprised at the pain when I woke up. It wasn't where it belonged. It was sharp pain in my neck and shoulder. It hasn't completely gone away yet. It was something where a past shoulder problem happened again when my arm was above my head for 2.5 hours during surgery.

They gave me ice and a physiotherapist came today and iced again and gave me a soft massage. She also gave me a new breathing toy that I'm not so fond of yet. Maybe later I'll successfully inhale air strong enough to make my surgeon happy. Shall see. For now, it is slightly painful to breathe deeply. I have a drain in my side going to a rectangular box. That drain hurts when I sneeze, cough, or do anything else extreme... Keeping me a little quiet.

The surgeon had good news. and not so good news. Here it goes:
He completely removed the main tumor site in my lung. He also removed a lot of my lymph nodes near my esophagus but many were stuck on the esophagus and he was careful to not cut there too much since it could create many other problems. So there are probably some cancer cells in me still. But I'm not done fighting.

I talked with my oncologist today and he explained to my husband and I that this type of cancer is rare (yeah, thanks body) and at my age it is rare to get as well (again, thanks body for going above and beyond) :) but the cells are extremely sensitive to radiation and that he is certain they will be killed during radiation treatment which will be combined with chemotherapy... when? Undetermined. He hopes to get more biopsy results on Saturday and then by next week start sorting things out.

Me? I'm simply focused on getting stronger after that surgery. Breathing in and making balls move.
Appreciating all the support and love from family and friends.

Came across a Facebook post I wrote a year ago- found it quite ironic considering that weeks later my first diagnosis occurred:
(Seriously, listen to your body when it is screaming at you!)

Tuesday, August 26, 2014

The Waiting Game

I'm always thrown by how much waiting is involved with all three of these diagnosis. We have the waiting intially for test results, the waiting for a biopsy and getting it, waiting for the results of biopsy, waiting for surgeon appointment, waiting for the followup with oncologist for further analysis of biopsy cells, waiting for breathing test, and now waiting for surgery... and then after surgery waiting for decisions on chemotherapy and radiation treatment.

It is enough to drive me batty.

Which is why I appreciate all the positive supportive comments thru Facebook-email-here, the funny video distractions, the fabulous books I'm reading and listening to, the friend chats, Skypes, and more... so grateful for it all. The best distraction for me though over all that is family. Tonight as I sat in the hospital distracting myself, not really wanting to do those last minute to-do's. I was starting to slump a little. I'd had a breathing test (passed with flying colors), met with my surgeon and oncologist, chatted with the local chaplan, and caught up with nurses who remembered me from other hospital stays. I was honestly a little drained saying the same thing over and over to new people who didn't familiarize themselves with my chart before walking in (everyone). Repeatedly saying: "Yes, lung cancer, right side. Yes, I'm doing ok. Yes, I'm a little angry this time round at having to fight a third battle. Yes, I'm staying strong and positive. No the cancer hasn't spread, this is a third separate diagnosis. Yes, it is scarier this time...."

Talking with the surgeon was good since my husband and I were able to clarify how long the surgery is (I go in around 1:30pm and they expect to wheel me back into the room around 5pm with me being groggy/maybe waiting up for a few minutes after that.) I was able to ask about the pain a little more and the surgeon told me about how there will be a drain put into the bottom incision which has hurt sometimes with other patients because the tube will be pushed in over the ribs where there are many nerves so the drain will make it hurt a little when I caugh, talk too much/loud, sneeze, etc., oh boy. I had a drain before with my first surgery but it wasn't anything in comparison. This sounds more like the pain I had after the lung biopsy 1 1/2 weeks ago... but it is only for 48 hours (hopefully) so I will bear with it and just be grateful to come out of surgery successfully. (knock on wood)
He told me my goal is to sit up the day after surgery. Then the following day walk around this floor of the hospital four times in a row, that would make him really happy. So I went and walked around the circular smallish floor 20 times while listening to a new audiobook. Felt quite healthy to make that time.

Talking with the anesthesiologist wasn't my most fantastic thrill at 9pm... he came right after I got ready for bed and had my night guard in my mouth... It freaked him out a little I think. He talked with me about what would happen tomorrow, where I'd get medicine, how I might feel, where the needle would be placed for the rest of my hospital stay, etc. I pointed out how frustrated I was that the cancer is on the right side so I knew that all treatment would occur in my left hand- chemo, this needle for surgery tomorrow, etc... He told me he'd think on putting the needle in a little further up my arm so that my hand wouldn't be restricted as much... As a left-hander, I appreciate whatever can be done but as a patient I just said, "Whatever you think needs to happen, do it. Please don't change normal practice and what you know is best."

So family time. Since I am stuck at the hospital, I planned out Skyping with my son in the evening for our routine. I wasn't sure what I'd get from him with Skype since it is sometimes hit or miss with his mood with Skype. This time, it was simply wonderful to check in on his day, see a new lego creation he had, and have HIM read to ME... love when we trade off. He read a few pages of a book to me that we've enjoyed recently. I love hearing him read books aloud. It is a treasured time to see what he's thinking as he's reading, etc. I also sing to him every night. He was happy to get his bedtime songs and blow me a kiss goodnight... I don't want him to visit here in the hospital until I'm actually able to talk smoothly (might have that harder time talking after surgery, shall see) so I hope to Skype tomorrow evening when I wake up for a little while, shall see what possibility there is for that.

I look forward to distracting myself from the waiting game with time with my wonderful husband tomorrow who plans on hanging out in the hospital all day to make sure he's here in case there's something scary that happens. (Thank goodness his school colleagues are supportive as much as mine are...) I also look forward to Skyping with family... my very important sister and my wonderful mom and dad...

And so I hope to sleep, wait, Skype, chat, wait, and then go in for surgery.

Sunday, August 24, 2014

Preparation: Mental and Physical

Getting approved for surgery was the first step.
Mentally getting ready is a whole other ballgame.
I'm really am appreciating a meditation app presently- Headspace -
It is helping me refocus a little. I know I did my own form of meditation every time I was in the tunnel for radiation treatment... but this is purposeful. Different.
So, what's on my list in preparation for the surgery? (Surgery is this coming week on Wednesday, I check in at the hospital Tuesday.)

Work stuff: found out that I will have a substitute this time. This leads to many preparations- lesson plans, calendar planning, contact lists, author visit organization, and book fair planning... Feel like I'm only scratching the surface of the things I will address in the next week... but it can be done and worries will pass and I'll be able to refocus on myself soon.

Personal stuff: make sure my other blog is ship shape- I already prewrote 28 posts a while ago. Didn't know I was preparing for a break with a surgery, just had prewritten book reviews, life updates and such since I had a holiday and wanted to focus on work instead of being distracted on the computer.

Audiobooks: I might have enough energy and concentration after a day's recovery to listen to audiobooks... so I have focused on getting a few from the public library in addition to snagging a few from Audible. For months now I've been enjoying other audiobooks from free sources such as and other resources... but having a few adult audiobooks will be lovely to be distracted by... Downloaded a few. Plus have some great eBooks waiting to read...

Regular books: I don't plan to bring more than two physical books since I'll be home (hopefully) after 5 days... I have a load of books that I've committed to reviewing from Netgalley, so will enjoy reading them if I have concentration power.

Holds: I placed holds on various books - eBook and audiobooks - at the public library. I like doing this so I know some book treat is coming sooner or later.

Writing letters: I have some letters to write up... not to be morbid or anything, just want to write them now while I have the energy and reflection.

Paperwork: Dealing with random paperwork...

I know, I'm not going to camp. Just dealing with life and trying to keep positive.

I'm also researching and calming myself as questions come up. (Always the researcher, librarian in me comes out...)

I appreciated this Q/A website about lung cancer:

And this information on Chemotherapy for Lung Cancer:

And I plan to watch some of these videos about people's experiences with lung cancer soon enough:

And then also helpful to read more on non-small cell lung cancer's treatment advances:

I have random things flitting thru my mind. For example: the need to pack my breakfast for the hospital since I can eat until 7:30am and I know the hospital is slow at getting me food in the AM. I want to make sure I can eat before going into surgery later in the day... I also want to take my vitamins/medicine in the AM!

Wednesday, August 20, 2014

Surgery and Guardians of the Universe

Over the weekend thoughts:
Warning to parents who are dealing with cancer in anyway, if you want to avoid violence, or if you don't want to expose your child to swearing, look out for this movie. I enjoyed it overall. My kiddo enjoyed it overall. But at the beginning of the movie there was a opening scene with a little boy at the hospital with his mom dying of cancer. (She looked terrible...) My little guy leaned over during a part of the scene where there was a close up on the dying mom and asked "Mommy, will you look like that?" I whispered back, "I don't expect it." Sigh... Hard part of the day but he didn't say anything else and just enjoyed the film.

Waiting is hard. The surgeon postponed the appointment for a day. Glad to get into talk.
We talked for 50 minutes with him.
He was very positive and confident.
I walked away feeling ok. Not thrilled of course with any of this but ok. 
So, here's the deal... I have a mass- infiltration by lymphoepithelioma-like carcinoma in my right lower lung. It is non-small cell lung cancer.
I also have a growth on my lymph nodes.

He believes he can operate and remove both.
He would cut on my right side in three places- one for the surgery, one for removal of lobe of lung and lymph nodes, and one for camera.
I would have a video assistant thoracoscopic surgery.
He would remove my complete right lower lobe of my lung- there are 3 parts to the lung. He would also take out all the lymphatic and adjacent lymph nodes. 
The day before the surgery I would need to check in during daytime hours and do a lung function objective test. It would be at the hospital where I've had most of the other operations and radiation treatment. 
I would be checked in and need to spend the night at the hospital and then the next day would be the operation.

The risks: 
There are risks since this is a major operation and invasive.
1. I could get a wound infection.
2. I could get pneumonia or some other type of chest infection.
3. I could have bleeding since he is cutting through many blood vessels to remove the lobe of the lung.
4. I could have an airleak from the lung recession.
5. I could have lymph node leaks.

I would have pain but it would be under Dr. control with medication.

Recovery time- with my age, he expects me to quickly recover.
The day after the surgery he'd have me sit up.
The day following that he'd want me up and walking around.
He thinks I might even have better lung capacity after a year than I do now with the exercises he'll prescribe afterwards, etc.

He would keep massage devices on my legs for at least two days to avoid deep vein thrombosis in the legs... also they'd be on there during the surgery.

I would need to stay in the hospital for around five days.

I would need around 4 weeks to fully recover.
After 3 weeks, he would expect me to begin chemotherapy. Chemo cycles might be once every 3 weeks for 4 times. Chemo treatment all depends on assessing the removed lung/lymph nodes and after evaluating them, they can classify the stage of cancer I'm at... although my other dr. already said I am at stage 3 since it is in my lymph nodes.

He expects to do the surgery next week mid week- maybe Wed or Thurs.

Breathing a little easier (hah) since I qualify for surgery. Can't believe I'm going thru this again. 
Shall just enjoy the week ahead as much as I can...

Friday, August 15, 2014

Call me Lucky, well, not so much

In some ways I'd classify myself as quite lucky. I am in an incredibly happy marriage with a wonderful, kind, patient husband... I have a son who is hilarious, kind, sensitive, and sweet. I have a loving family who I'm in close touch with. I have fantastic friends. I have a job I love. I'm passionate about so many different subjects and love learning...
I unfortunately have a flaw. My body apparently invites cancer to nestle in. Seriously.
I am a two time cancer survivor. I battled cervical cancer in November '13 and breast cancer in March '14. Yes, within less than a year's time my incredible doctor on a followup appointment found a tiny lump. Both cancers were stage 1. Both cancer treatments included operations and radiation. So yes, a survivor. I wrote other posts about some of my experiences with the operations and radiation...
But then my doctor and I wanted confirmation that treatment was successful. So in August '14, I went for a PET scan, that's where they inject you with glucose mixed with radiation and it goes thru your body and lights up areas that might have cancer. So, I waited a week. Results came back in a bound notebook packed with colorful pictures and even an accompanying disc.
And I heard what I didn't want to hear. I was waiting for, you strong person, you beat the odds, you're clear. Instead I heard, "Oh no, something is going on with your lymph nodes. And look here, your lung is lit up here and here."
I put my head down on my doctor's desk, heart plummeting. I'd tried to be so positive...
The next day I went in for a lung biopsy. That is one stinking scary test. Scarier than CT, MRI, PET scan, radiation treatment, and a needle biopsy for my breast cancer, which I also had...
For a lung biopsy, you're laid down on a CT machine and told to hold still, for 45 minutes. Not only that, you're in and out of the CT machine with someone sticking a long needle into your side and then scanning to make sure the needle was in the right place, then another really long needle is inserted into the other needle and punched into your lung for little miniscule pieces to pull out. Of course you need to hold your breath, breathe carefully, and more as this happens. After that occurs you have to stay still for four hours in case your lung collapses or you bleed too much. I was a very good patient with no complications... Doctors usually do like me...
Two days later, today, my wonderful husband and I went to the appointment that revealed biopsy results. Upsetting results. Somehow, for the third time, I have another type of cancer. Lung cancer. It hasn't spread from one place to another, it is just another cancer. This time, unfortunately, it isn't Stage 1, it is Stage 3 because there is a growth not only on my lung but also on my lymph nodes near my heart...
Tonight we had the conversation I never wanted to have with my son. In the past we were able to talk with our son about how I had bad stuff in me that needed to be cut out. This time I blatently had to tell him about the cancer. What happened in the past, what was successful... and what we have to do in the future with the new lung cancer treatments (possible operation, chemotherapy, and radiation). My son's reactions were: "Mommy, I like your hair, I don't want you to lose it." "What do I tell people at school?" "What if I'm put on the spot with questions about you?" ""Am I allowed to use the word cancer?" My response about the hair was, "I love my hair too but I love you more and I want to try to be around living with you for a long time." Our response about what to tell others was "Adults might know but if people ask, you can just say that your mom had to have an operation and she's going to take a while to get better." He seems ok but we left the door open for any further questions. His next question was, "Ok mommy, so I heard about that part of the day, tell me about other parts of your day now..." Not just a cancer victim, but a mommy, I love that.
So, on to fight the perilous, exhausting fight again... not fun, not thrilled but don't want to leave this earth anytime soon. Love life too much...

Possibly 3? Am I crazy?

So, it has been months since I blogged. In that time I've experienced the highs and very down lows of recovering from the radical hysterectomy, radiation treatment, diagnosis of breast cancer, lumpectomy, lymph node op, radiation treatment, and then a PET scan many months later.

I was feeling pretty good about life for the past months. I've adjusted my diet, lost weight unintentionally, had some fun travels, visited family and friends over the summer, and was hoping for a clean bill of health.

Again I got the yes, but.

Yes, you're clear of cervical cancer and breast cancer but now we see some growths in your lungs and lymph nodes near your heart.
What the heck?
Have I flipped a switch that said to cancer, "Here I am, have at me!"
What have I done wrong?
I had a clean CT scan of my lungs in November, now, not at all.
Have to have a lung biopsy in the am.

Can't find anything funny about a third possible cancer.
Just disgusted with the situation, grateful to the doctors, grateful to the medical professionals, lab technicians, etc.
So frustrating.
Biopsy on wedding anniversary no less, happy anniversary honey! I thought I'd go all out and really make you appreciate life... not so much so...

Been thinking about books to bring. Not like it is a campout or anything but I must preplan... Will not bring laptop this time but bring iPad, Kindle, and other things...
Quite a let down to have clear scans until...
Lung cancer is quite a bit more scary than breast or cervical cancer in my opinion. I have a feeling if the diagnosis comes thru, I'll have to deal with chemotherapy this time... and possibly radiation again... not looking forward to going back for radiation, hated it the last two times... burns on my skin, internal ache, side effects are there...

Nope, not positive but already ready for a fight... love life...

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.

Humor: the best things about getting a radical hysterectomy are...

So, I usually try to address stressful situations with a little humor. For example, I almost started crying when I was going into surgery. Everyone was so serious. Too many people were telling me to relax. It was upsetting. So when I was wheeled into the surgery area, I noticed the lighting looked like a dance hall. I told my surgeon, so I'm at a disco! He smiled and patted me on the shoulder. My anesthesiologist gave me the oddest look.
A day after surgery, a pastor came to check on me. She was quite concerned about how I was feeling. She was thrown when I explained how relieved and grateful I was. She didn't understand why I was happy. I explained about how my cancer was caught at an early stage, how I had a healthy child, how I had a healthy happy marriage and a good work environment to look forward to returning to... and she said to me "I could learn about happiness from you." I didn't see her again.
I've been trying to create lists in my head as I go through Tomotherapy, radiation, every day. As I mentioned, I try to distract myself a little in stressful situations. Tomotherapy is stressful to me. Go into a tube and get scanned and then have a bunch of rays shooting into me probably giving me many side effects and without knowledge of the success of the procedure, it is stressful. So, the other day, I started making lists for myself.
Here's one:
The best things about getting a radical hysterectomy are:
1. You appreciate the ability to pee. Brings you back to basics.
2. You're bedridden for weeks, reading is a beautiful distraction, so are tv shows!
3. No worries about getting pregnant.
4. No more pads to purchase.
5. No more birth control pills, saves money all the way around.
6. You get to meet new people and talk about your bowel movements and have your weight and blood pressure taken up to 5 times in a day.
7. You have a lovely bikini line scar.
8. You can be alone during recovery for long periods of time. How often are you alone with your thoughts?
9. You can let go a little and have experts tell you to eat well and check on you...
10. No exercise for quite a while. (Ok, this sucks, I miss yoga and Zumba and swing dancing and was really hoping to return to it this fall since my hip was feeling better...)

So... there's one way I deal with negative, turn to positive...

I love watching Parenthood

Simple and easy, I love watching Parenthood. A few years ago when Parenthood began, I thought "Oh boy, I just love some of the actors and actresses in this show, I hope the pacing can carry such a big ensemble!" It took a few episodes but I was quickly hooked.
I have a confession to make, I'm a huge tv addict. I am additionally a huge reader. Some friends don't see how the two can combine, some don't have a tv at their home... but I honestly find the two to provide a helpful balance in life. Often my brain doesn't actually want to input new books after working all day in a library reading aloud, looking at computer screens, and promoting literature. It just wants to decompress. I used to (for over 20 years) watch numerous soap operas. Since I moved to another country, I've finally completely given up that addiction... and now am instead enjoying tv shows.
So, Parenthood. Why do I love it so much? Because it reaches a variety of ages. It carries on numerous plots that I normally care about. It is thoughtful and touching. The first few times my husband walked into the room while I was watching the show he said "Oh, you're watching that show where they yell at each other". And I admit, there were numerous episodes where the characters get loud and almost talk over one another, but it was because they cared. Not just because they were obnoxious.
I miss the days when I had friends I could chatter with about tv shows. Gone is that time. So instead, I enjoy the show on my own and grow watching it. Last season one of the main characters, Kristina, was diagnosed with breast cancer. This show delivered how quick, upsetting, impacting, and devastating the news was to the immediate and extended family. Talk about people pulling together and supporting one another. Even those who had those tenative relationships, they supported one another beautifully. I sat and thought to myself, "I appreciate watching how this is developing even though it is heart wrenching. It is realistic and helps me sort out my feelings..."
So, I hate hospitals. I lost an uncle to cancer when I was young. A grandmother to a heart condition. Another grandmother to Alzheimer's. By the time I was 15, I had one grandparent left but numerous beautiful memories. I hate hospitals. I've barely ever visited friends when they had a baby, I've visited them after they're home from the hospital. I'll support others from a distance and visit after they're out of the hospital. I just hate hospitals. (More recently I have visited and supported friends in the hospital though...)
I've supported from afar family members who lived in the hospital as their child fought, and won, a bout with cancer. I've supported from afar a former student struggling with her cancer fight. I hate cancer.
Now, I've been in the hospital more frequently than I'd ever expected.
Parenthood helped me mentally prepare for this journey, even though it is a fictionalized account of life.
I blog quite a lot about life on another website. I decided that the website was quite public and this blog would be more personal. Since I'm accustomed to sharing my thoughts and feel at ease writing and find it to be a healthy outlet, I decided to share here vs. just keep a more private journal. So this is more for close family and friends who know about this journey I'm on...
So, this will be my brutally honest account of my little life journey that has been temporarily, I hope, interrupted.