No work yet, missed? 1.5 weeks...

Hair is growing!

I love spending time at home, with my dog, with my mom, but really and truly, I really had hoped I'd be back at work this week. I was so wrong. This optimistic nurse on Saturday said we're getting you sorted out so that you can get right back into work come Monday. That did not happen.
I had to advocate for myself in an aggressive manner this time. So, thought I'd share some of the communication... but honestly when I think about it now, it wasn't as terrible.... oh yes, it was... but I didn't have to write everything I did to the nurses... I admit that...

Sunday I felt fully debilitated. I was hunched over in pain. Couldn't stand up straight. Couldn't get comfortable in bed. Was in simply terrible pain. And I was so sick of doctors offices by this point...

I sent this message on Sunday evening:

Me:
The feeding tube is working well, I'm up to the suggested amount of food and water but I am in frequent internal pain. Unsure if the tube is pushing at something inside but I can't walk without being hunched over in pain and I can't lay down without massive painful muscle spasms. The incision site is clean.
Not sure who to contact. Frustrated and concerned.
The home nurse was helpful but did not trim the tube hardly at all so I am taping up a really long tube which is frustrating as well. It is at least 8 inches long.
Would love advice. Children's Liquid Tylenol helped a miniscule amount but I'd like to focus my energy on being strong for the Nivolumab to do what it needs to do. Don't think my stomach muscles have relaxed in at least 12 hours.
==

Then on Monday I had these interactions:

===

Nurse: Hello,
As I mentioned on our phone call, Dr. ___ would like to to follow up regarding the pain from the PEG tube with the GI team that inserted the PEG on Friday. She is not concerned with you taking the Children's Tylenol for breakthrough pain, and encourages you take this as ordered for pain.
You may want to use heat, or cold, to your abdomin to help ease the cramping.
We hope this resolves your discomfort.

===

Me: Thank you,
I know this is more than just discomfort. I've had a hysterectomy, a partial lung removal, a lumpectomy. I've had drains before in me for days. I've had pain before. I'm good dealing with pain. Honest. This is debilitating. I cannot stand up straight. I cannot walk without pain. I cannot lay down without taking 10 minutes to situate myself. This is more that just discomfort. I am very concerned. Please help. Pleading now.
I honestly think someone should actually look at me instead of telling me to use a heating/cooling pad. I depend on my job. I had to take another sick day. I'm very concerned that I'm still stuck in bed.

===
Nurse: Hi again,
I noticed this message because it was under Dr. ____ but the provider who placed your PEG tube was Dr. ____  so I will be sending the message to her team to follow up with you.
Take care, ___

===

Nurse: Hello,
This is P___, RN of Dr. ___.
I am sorry I haven't been able to reach you via phone but I discussed with Dr. ___ and she believes you should be evaluated in the Emergency department in regards to your debilitating PEG pain.
You might need a CT-scan and the GI fellow on call can see you in person there.
We want to make sure you are safe.
___ RN

===

Me: Thank you. I am waiting at the ER. Honestly feel like I'm being punished being sent to the ER for speaking up for myself.
I've never been sent to the ER in the two + years I've dealt with cancer.
The germs and exposure here in addition to wait time for goodness knows how long is not pleasant. I just had chemo/immunotherapy treatment on Saturday. I was told to avoid germs.
But I'm doing as I've been told.
Thank you.
======

Nurse: I am sorry you feel this way Debbie, but we don't know what could be wrong unless somebody lays eyes on you. Unfortunately, at a clinic setting we don't have the ability to see patient for urgent evaluations that your stated pain warrants.
I hope you can be seen soon in ED.
Sincerely,
___ RN

======

Posted this after the ER visit:

Home from ER after 4 hours. Glad I got seen instead of accepting being put off by doctors but man I didn't enjoy the ER much. 
I found out I'm a special case (go figure). I'm 1 in 10 patients who have a feeding tube complication of basically a charley horse/massive pain at the incision area where they cut thru my abdominal wall/muscle/nerve. So pain should subside soon enough (they said 4 or so days) So relieved to have an answer. Pain meds might help. Thanks to all concerned. Just chilling out at home and appreciating my parents who have been thru too many days of my medical mishap lately.

===

So, that was Monday. Now it is Saturday.

Today, Saturday, is the FIRST day I am able to easily get up/move around/have energy/almost feel like "me". Seriously. That's 8 days after the procedure that I was supposed to recover from within 24 hours. Harumph.

I missed work all week including a costume book character celebration (broke my heart to miss), a book fair (I've missed book fairs for the 3 years in Hong Kong and was so upset to miss my first one at my new school, everything went smooth because there's an amazing team/staff who manage it but MAN I hated to miss it...)

Bah. 

Hooray for feeling a little human.

Not fond of the formula I'm on but yesterday I went with my mom to my naturopath and we discussed how to make my own healthy formula packed with greens, vitamins, healthy energy mix, etc. Looking forward to trying out soon. 

What am I dealing with now? Pain- if I cough, heaven forbid. I'm pretty debilitated if I cough. My recovery time from a coughing fit is much quicker though. Not quite standing up straight but MUCH better than before. A mom who has watched me at my lowest and celebrated me getting around smoothly today. Pile up of emails at work and learning to let go once again.
Weight. I'm up to 115 now. Stable there. Hoping to gain more consistently, will see. Crazy to be below 130 in my opinion but I can gain it again... I'm sure I can.

VERY happy to be on Nivolumab. I'm excited and hopeful. Seriously hopeful. So grateful to people who have helped out. Receiving a book on feeding tubes and recipes, etc. last night was a gift, wonderful surprise. Kiddo getting to attend an awesome Halloween party and being so happy... plus his final soccer game today. 

So relieved to count on my parents. Relieved that my husband has a job that is turning out ok. Relieved that the kiddo is starting the after school program on Monday. Hopeful to go to work on Monday, shall see, won't push myself!

I was recommended to visit this feeding tube community:

Feeding Tube support community: (very overwhelming site)
http://oley.org/index.html

Not too much else to share.
Hair is growing out and getting unruly. Love it still but man it is starting to be an afro... want to grow it out for another month or so and then will try out getting a very light trim. Happy happy happy to have hair. So relieved the Nivolumab doesn't make my hair fall out (yes, I'd still take it if I did make my hair fall out, but I'm celebrating having hair here!)

Hooray for hope.
Thanks, as always, for journeying with me...

Could it be?

Husband is back from his scuba diving trip to the Philippines.
He had quite a load of fun. So happy he had that time...

So.
I know I've talked about this pain in my side for a long long time. I also have been dealing with wearing sports bras and supportive tank tops as well. The other day I rotated to sports bras after weeks of wearing supportive tank tops. That day the pain was gone. Hmm. The next day I didn't rotate back to the tank top. No pain. Today? Wore a tank top. Go figure, pain. Could it be? Could I have been treating one symptom (cellulitis in r. breast) and getting another one? Could it be as simple as stopping wearing those tank tops? I love those things darn it. And I was feeling pretty well supported. But I'll try to investigate this further. Crazy body. Crazy reactions. Glad I noticed the connecting difference... I guess... - written Wednesday. Now Saturday: pain has eased up so much, what a relief. Annoying that what I've been wearing has been giving me so much pain...

So on to another pain for the past 2 weeks.... my stomach has been giving me such pain with cramps I haven't slept more than a few hours. So I talked with my oncologist about it. He gave me pain medication. He gave me another medication but unfortunately I couldn't find a pharmacy that stocks it... shall find it soon. Pain sucks. Pain medication helps a little bit. Was able to go book shopping with the kiddo and enjoyed spending time with him... Hoping to sleep better tonight. My oncologist got a little panicky when he found out that I lost weight again (couldn't eat much all week, not sure why, couldn't even swallow pills without gagging...) and he was also concerned about the pain and wanted to get a PET scan done sooner to find out what was going on. Shall see what happens in the next week.

Time is creeping up on us... Yikes to the move happening soon.
This past week I watched a show... it helped distract me from the stomach pain- Chasing Life- was on Netflix... pretty good. Heartbreaking too since it is about a 24 year old woman who finds out she has cancer and her life is turned upside down... I know some might avoid cancer related stories as I dealt with my own situation but watching this was helpful...

Our dog is doing better.... poor old girl. She's flying out before us... getting things sorted for her. She has many issues and one is that she obsessively licks and creates sores on her skin... I decided to try having her wear a t-shirt to distract her. Really worked well. She's adorable in them and I've noticed she's much calmer at night now and I don't have to worry about her licking anymore...
Shall see how the next weeks are. Chilling out and enjoying life as well as I can. Hoping that pain eases up so that I don't have to mask it with medication...
Thanks as always for journeying with me...

Many Hmmms but happy moments too

Happy day, visited favorite used bookstore yesterday.
Called- Flow Books- learned that it is closing/moving soon.
Hong Kong friends, get over there now!
Such a nice owner, hope he finds a new place to move to!
One of my new hats with an old scarf and a cute blue clip...
Thanks Mom!

It is incredible what a few days extra of recovery provide a body. Unfortunately, my stamina isn't completely there... I can still last for 3-4 hours but find myself getting pretty tired after that if I'm walking around. I haven't hit 10,000 steps again, my friend Sheli has each day though... we're wandering around Hong Kong between appointments and such.
Today provided us with a relaxed morning and an adventure out to Central for me to finally take the Satyananda yoga class that is provided through CancerLink. I really appreciated every minute of the class. The instructor was patient, knowledgeable, had a good sense of humor and introduced the yoga style in an easy fashion. I found that my range of motion isn't what it used to be. Five scars on my right side certainly have impacted me but I've healed a lot in the past months, the pain has resided so much. Giving myself time to heal and being patient, as much as I can...
I've talked with doctors and more than one mentioned that chemotherapy brings back up radiation treatment reactions, yep. At least it doesn't burn but the area where I had radiation in May certainly isn't happy skin. The scalp isn't quite healed but I've completed the antibiotics. #6 of 12 chemo treatments is tomorrow. It is a one drug day... not fun but quicker.
Saw my acupuncturist yesterday, appreciate his perspective... he lectured me on how to cook the eggs I'm eating and encouraged me to eat two a day. He also has been helping me focus on letting go of worries, etc during treatment, that's pretty wonderful and helpful...
Was chatting with Sheli today about my hair as I've noticed it growing out a tiny bit. Am wondering how much will be there by #12, hair still is falling out constantly but not sure... Also curious to see the state of my eyebrows and eyelashes by then, my oncologist thinks that they won't fall out. Hmm. Taking it day by day.
Sorted out my daily supplements and medicine today and there are a lot. I chatted with Sheli about how it would be nice to figure out how to cut back on them somehow... but I just keep adding. Hmm.
Was bit 8 times the other day by mosquitoes- even though I did put on bug repellant, hmm. Glaring at insects doesn't really work folks... but I have noticed that my coconut oil/slippery elm bark mix really does help my skin calm down and mostly heal! Happy that I tried it out... not quite perfect but darn lot better than it could be!

*Received the most thoughtful video created and made by my former school's staff from Ridgewood Elementary. So, so touched. At first I couldn't believe they did it all for me... but they did. They created a lip-sync sing along video with different grade level teams competing against one another... for me to choose a winner (impossible) to show their love and make me laugh... and laugh (and cry) I did. So touched. So grateful. I want to share it here but it is unlisted and I know there could be some copyright issues and I want to keep rewatching it in the future! Thank you to my Ridgewood friends... so grateful, feeling loved on this end...

Thanks for keeping up with the journey... really appreciate all the support through this time... can't believe I'm already on week 6 of chemo...

That question: What are good things about cancer? Chemotherapy?

Just can not fully smile at chemotherapy...
Every week I take a picture and look like this.
Friends told me it was my "determined" look... I'll take that.
Sounds better than grouchy, right?

Around 11 months ago, I was recovering from my radical hysterectomy and preparing for radiation. Look at me now. Darn cervical cancer leaped into my lung and lymph nodes. Crazy. I'm staying positive, adopting even more healthy practices, and appreciating life... I do consider myself a breast cancer survivor. Funny (not so much so) that my breast cancer March-May '14 feels more like a blip now that I'm dealing with chemo, etc.

A little bit ago a good friend asked me to reflect on cancer and what the positives were of having it. Honestly, cancer totally sucks. But I can try to find the 'silver linings' of cancer... I certainly appreciate life more. I've learned many new things. I learned about how to be a better friend, wife, mom and person. I learned how to prioritize my needs and celebrate success before I move to the next project. I learned how to give myself a break and appreciate myself. I learned about Qigong, mindfulness, pulling, and more healthy practices. I learned to be responsible for myself by creating an id tag with contact numbers and chemotherapy drugs listed on it so that if there is an emergency, I have it there ready to point at. I hope I'll continue growing as a person and survive for many many years to come without the need for my body to add any more cancer crisis situations in.

Last year in November when I was finishing my first experience with radiation treatment I began a list of positives dealing with radiation. I continued adding to that list of positives in May when I was getting radiation treatment for breast cancer. I tried to have a little humor and looked for the positives... I like looking over this list even though I dread dealing with radiation again after chemotherapy finishes this time. Shall see...
http://lifesjourneyinterrupted.blogspot.hk/2014/08/positives-about-radiation-list.html

I went in for my fourth chemotherapy session in the morning. 1/3 of the way through. I gained weight, again! Was so exciting, did a happy dance. My oncologist told me he liked my facial color and thought I was doing well, besides the side effects. But, I'm not enjoying chemotherapy, all three drugs go in again next week and I know that I've had a harder reaction with the three combined and that this week was really the peak of my recovery from that first round. I'm not thrilled to see how my body is freaking out with bloody noses, scalp shedding hair, nausea, crap immune system, and fatigue/weakness slowing me down. I do appreciate that I'm learning how to better listen to my body. That's a really good thing but honestly, I don't feel like I ever abused my body. I enjoyed exercise- especially dancing, ate mostly healthy (chocolate and sweets admitted), and have always been a pretty positive person... Hmm. Just not so lucky with TWO cancers that wreak havoc on my body.

Here's the beginning list of what are mostly positives about chemotherapy:
1. You can see an oncologist frequently and receive instant answers to questions.
2. You get 1:1 attention with nurses and more.
3. There are mostly good anti-nausea medications that help.
4. Sometimes you don't lose your appetite throughout the whole week.
5. You certainly have a chance to lose weight depending on medication and reactions...
6. New routines are adopted such as gargling, pulling, etc.
7. You become keenly self aware of your body and organized logging your medicine intake and reactions to chemotherapy.
8. You get new social resouces such as CancerLink here in Hong Kong.
9. Short hair revelations- can live with it and probably handle being bald.
10. You can play a guessing game about where the chemo will go into your hand each week. Sometimes there are some angles and different veins chosen!
11. You are forced to slow down, not a terrible thing to be given that time.
12. Sitting quietly can be peaceful.
13. You might find more interesting reading material and learn quite a bit about chemotherapy, drugs you're getting, and more.
14. There is an end in sight, it is possible to get through this, day by day.
15. Learn that you can ask for help and get it even from strangers if you faint on the MTR.
16. People in the chemotherapy room can empathize with your situation.
17. You can see yourself like a science experiment and try out multiple experiments to help heal yourself.
18. Learn about different friends strengths who can help out... and learn how to ask for help.
19. You value time with friends and family and learn again about prioritizing.
20. You feel no guilt when eating and prioritizing weight gain. *Funny to be excited about gaining weight!

That's the random mix I have so far on chemotherapy, it is possible to find positives, even if I'd never in a million years want anyone to deal with it themselves.
I'm grateful, growing, learning, and appreciating life... one day at a time. Thanks for journeying with me...

Perhaps oversharing?

Warning: This specific post isn't for those who are reading to check up on me. This is for those who don't mind a woman oversharing and complaining a smidge... maybe more than a smidge. Men... not exactly for you. My poor husband has heard it all and feels sorry for me, but that's part of his life with me, the oversharer... spare yourselves...

So, for a while now I've been thinking about nursing my son. I'm sure that's what others think about when they're dealing with the aftermath of operation effects and chemotherapy, right? No?
Well... here I go with sharing too much x 2 today.

So, nursing. I was one of those smarties. I thought to myself, "I've nursed my son for 16 months, I'm preventing any chance of breast cancer, woo hoo!" (little did I know 8 years later...)
Eight years later when I received my first diagnosis (cervical cancer) my first thought was, "Thank god my son is already here." well, maybe not my first thought... but I was so grateful my husband and I already had a happy, healthy child. So grateful.

So, for those moms who have nursed their children, do you remember when your boobs felt heavy, ready to pump or nurse? And do you remember ever feeling that for more than an hour? two hours? As teachers, some of us have that challenge of the "must pump!!" moment but you still have 3 classes in a row you must teach first.

Hmm.
So, why the heck is my mind backtracking eight years?
Because for the past stinking month, my right boob has felt like it was crazy engorged. To that point where I'm ready to scream "OW!!!" Well, sometimes I do yelp... I think it is a combo of a few things:
1. Lymph node removal- drainage is screwed now
2. Surgeon who removed my lower right lung cut into the underside of my breast to get to the lung (think that's the camera incision), also he cut a long incision across and almost into my breast for the lung removal portion (I think). The scars are healing but still a bit painful sometimes. Quit taking tylenol/panedol a week ago. That poor breast didn't need to be cut into more than it already had with the lumpectomy.
3. Radiation- this poor boob had already been thru enough in May when I went in for round after round of radiation. Poor thing doesn't know what end is up. My oncologist offered anti-inflammatory. No. I was taking that and nothing happened with the breast... nice thought though. He's told me "wear sports and supportive bras"... certainly am during daytime hours, made the mistake once of not, OWWWW.

So I walk around with what I describe as an engorged, painful breast in addition to the center of my chest burning with pain (assuming it is the cancer/healing from lymph node removal)... in addition to feeling scar tissue form... oy. I feel very lopsided when I look in the mirror. I've asked a few poor girlfriends if they can see a difference when they visited. They said "well, now that you've pointed it out..." - hah. I share too much sometimes... right?
Shared too much yet?
No?
Well here goes more then...

I'm going on goodness knows how much sleep today. I'm exhausted. Last night I was reading myself to sleep and realized I was wide awake still at 1pm. Oops, closed the book. Tried breathing, counting, peaceful thoughts. Nope. Opened book and continued to read. Then 2pm. Then 3pm- finished a book, LOVED it, didn't help the sleep predicament. The last time I was up ALL NIGHT was when I thought I had lice in July. Uh oh. Jumped up in realization at 4am. Sprayed my hair with these healthy oil stuff and combed my hair for 45 minutes squinting, looking, and checking- repeat times goodness knows how many. Blech. Really made me appreciate the short haircut. Nope, no lice. Yuck. BUT my scalp was freaking out. So itchy. Not sure if it is because my hair is curling back in as it grows a little bit and making it itchy when I lay down on it?? Not certain at all. But I was freaked out. IE no sleep. Thank goodness I brought back to Hong Kong the stuff that could immediately provide me with peace of mind. Yuck. Plus... my hair is falling out. Not clumps. But I'm pretty sure more than the 50-100 strands that can fall out daily- but of course it is more visible in some ways now since it is shorter. Hmm. Chilling out and enjoying hair while it is there... short and easy.

So, I'm done with my oversharing for the day.
I already went to my acupuncturist today. He worked on some energy healing and refocusing of my mind = redirecting from worry to letting go. Appreciated it but basketcase/exhausted one that I am... he made me cry- which is ok. I'm also trying his herbs, shall see. Will show ingredients to my oncologist but my oncologist already gave his approval for herbal medicine for a different Chinese medicine practitioner... so I'm not as concerned about that than I am all these other vitamins/herbs I have to bring in the list of and get permission for before I begin taking them.

I am going with wonderful husband to the local hospital today as well. Letting go of worries and concerns that are out of my control. Shall see how this appointment goes.
Thanks for bearing with me... To those that thought that I overshared, sigh. I warned, right? #gototopofpostandadddisclaimernow

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...

Alternative Medicine, Food Adaptations, and Post Surgery Update

A thoughtful friend recently wrote me and asked what types of alternative medicine I was open to... I filled her in on all my actions... she thought I was on the right path and exploring many options. I've always been a huge supporter of alternative medicine. 

When I was 18, I had to experience life using crutches at my university because of my knee being inflamed. I lived on the third floor of a dorm up a hill and over 50 stairs. I had recently decided to try being a vegetarian and was constantly eating baked potatoes and tomatoes. I couldn't figure out why my knee was constantly swollen, why I had to have the knee drained frequently over the course of that year, and I hated the anti-inflammatory pills my doctor prescribed because I knew I almost had an ulcer from them the year before... so I went alternative or what I prefer- preventative. I went to Bastyr University in Seattle and found a book that helped me. I dealt with allergy tests but what really helped overall was doing an elimination diet. It was enlightening to find out that my body didn't do well with nightshades. So I quit eating them. No more of my favorites- tomato, potato, peppers, eggplants... (Made sense why my knee was swollen all the time at the beginning of the year, I was basically poisoning myself!) I also eliminated for a long time alcohol, citrus, dairy, and red meat. These restrictions have kept my knee inflammation mostly at bay for years now. It was quite a relief to find a solution that actually worked.

So... I'm already used to food restrictions, it wasn't too hard to adapt to a new food protocol although my family found it pretty rough and a little annoying when it came to going to restaurants...

My big approach to life is to have a healthy whole body perspective and preventative care vs. having to react to things. Unfortunately, my body hasn't quite agreed with my philosophy even though I've tried to live a healthy life. You have to react when there's cancer cells invading your healthy body in different places!

I was chatting with another friend yesterday and she asked me about food. I told her how I wasn't even tempted to eat food that wasn't on my "list" and that I hadn't even eaten a cookie since I had one in June- it was one delicious chocolate chip gluten free cookie, heaven... *Besides a few little pieces of sugar free gum, I haven't had any candy since April, not even chocolate!

So thought I'd share my lifestyle/alternative practices:

I went to see a dietician and have adapted my food choices accordingly, although I'm not absolutely practicing the Kelley protocol because I lost so much weight that I had to find "give"... I added back in soba noodles, brown rice, quinoa, and edamame. I presently don't eat: meat- except for salmon, eggs, dairy, sugar, white rice, soy, processed foods, soda, alcohol, most grains, nightshades (still)... the list goes on. It is a little restrictive.

I have an osteopath- like a chiropractor, who I trust and appreciate. Expensive but worth every penny. I'll go to her post op/treatment. With bed rest, etc. feels pointless to go before.  Also massages are good. Booked one right before surgery. Will give it a couple of weeks before I return, want to feel a little more healed around all three incision areas first.

I take naturopathic supplements and vitamins. I've taken these for years for my arthritis but now have added in things like Tumeric...

Yoga is something I really appreciate but haven't found a place that I like yet here in Hong Kong. I've fallen behind in my normal routines but that is something I'm returning to, carefully.

I'm trying out essential oils as an alternative treatment. I did a little research and found some suggestions for lung cancer treatment and ordered what I thought our family could afford. Most of the essential oils have been purchased through Young Living.

Lavender, Frankincense, peppermint, orange, balsam fir, thyme, and R.C. from Young Living... 

R.C. has this in it: eucalyptus, myrtus communis leaf oil, origanum major leaf oil, pinus sylvestris, lavandula angustfolia oil, cupressus sempervirens oil, pica mariana leaf oil, mentha pipenta herb oil, citral, citronelial eugenol, geraniol, limonene, linalool... loads of stuff... 

Also getting these from US soon thru my friend: Ledum, Palo santo, Immunity (another mix)

I also recently began working on adding meditation into my life. I've continued to use the app Headspace- enjoying it. Downloaded a few others and have some videos to watch as well...

I Skype with a wonderful life coach. Next week I'll chat with her. Wonderful woman based in Oregon. She and I see each other via Skype once every two weeks. I appreciate her perspective and I also think it is really helpful for me to have someone who cares but is a little distanced from the situation I'm in... She's incredibly supportive and has given me reasonable goals that I can handle tackling. Also, she has some enlightening thoughts on my diet as well. My first goal was to reflect on where there might be inbalance in my life. We agreed HEALTH was ridiculously off and also finding joy was a priority... along with balancing my social scene... as a friend mentioned to me once, I love friendships and social situations. I love being counted on and also appreciate when there is reciprocal friendship experiences...
Also, through her suggestion, I'm consistently writing in the morning and evening in a journal. I treat it as a reflective journal at night and then in the morning I write about 10 things I'm grateful for in addition to life reflections. Sometimes it is as simple as being grateful that I've woken up and other times I write about foods I'm grateful provided me with good nutrition, special visits with family or friends, etc... I began this journal consistently writing one full day before I received the lung cancer diagnosis. Reading through the journal now is quite eye opening as to how positive and strong I can still be even in this frustrating time.

Reflection on life 2.5 days home from the hospital, 1 week post-surgery:

I'm fighting for my life, staying on an even keel with some wonderful friends and family checking in to make sure I'm getting positive boosts, and waiting to find out the protocol for treating the cancer in my lymph nodes. I can feel pain where the doctor removed the other lymph nodes to be honest. It is odd. Meditation throws me off a little when they ask you to do a body scan. I always think, yep, I feel those stitches- it is really frustrating that two of the three incisions were actually made through my right breast that had already been through enough with a lumpectomy in March and radiation in May- poor thing is overreacting and painful! Yes, I feel that chest pain, and yes, I feel a flutter against my ribs when I take a deep breath where my right lung bottom lobe was removed. 

I cough more which is a little disconcerting. I can't always sustain a conversation as I'm used to. It is good that I'm on bed rest since I don't think I could handle teaching all day at this point in recovery. I am purposefully taking walks every day since I got home from the hospital. I learned about the word "shattered" a while ago from a friend and I was thoroughly shattered today after I walked through Victoria Park and over to another area of Hong Kong to visit a few health food stores, O Farm and Green Dot Dot, they were cool to browse with many organic options. But getting home was quite an exhausting experience not only from being tired already but because it was hot and I was sweating! I think listening to an audiobook helped me concentrate and get along in the walk but man, I came home and rested for a long while. Shall take it a little easy tomorrow and then head to my oncologist to find out if he will share anything with us yet for future treatment plans. He's evaded questions completely with a kind smile and a "let's get results and heal from this surgery a little first" answer.

Good things?
I watched many good shows while I was in the hospital. I couldn't concentrate too well on reading as I had roommates that were a little noisy most of the time during when I would have read. Good excuse to watch shows!
I read many books since I got home. On my first full day at home, yesterday, I went over to Central and introduced myself to someone in CancerLink, the Cancer support center. I'm still waiting to hear from the English contact who hopefully will connect me with a support group to meet with. I was excited to find out CancerLink had a library I could borrow books from! I told the counselor who walked me across the room to it that I was a librarian and he nodded and smiled. Sigh to translations and tried conversations but I found two helpful books that I came home and read from cover to cover that day. They were The Chemotherapy and Radiation Therapy Survival Guide - Information, Suggestions, and Support to Help You Get Through Treatment by Judith McKay R.N. O.C.N and Nancee Hirano R.N. M.S. A.O.C.N. - wow was this book enlightening and helpful. I appreciated especially the meditation, stress reduction, visualization, and relaxation sections in addition to looking carefully over the nutrition chapters. Also, understanding a little more about radiation and chemotherapy was quite helpful.
I also borrowed Living with Lung Cancer- A Guide for Patients and Their Families by Barbara G. Cox, M.A.; David T. Carr, M/D/, Robert E. Lee, M.D. - this book was pretty interesting but after the reading the other book there were less things for me to extract. But useful to read nonetheless.
I read many other children's literature/YA books as well.
I listened to a few audiobooks, some dark but most light.
I had time to connect online with people.
I enjoyed family time.
My son played catch up for a few days showing me things I missed and chatting about school.
I was able to read aloud and complete a book with my son that we'd been reading together since June.
I connected with a few friends by phone and text.
Planning a few visits with friends in the coming days is also wonderful...
It honestly is a little lonely to be on bed rest. So, I'm thoroughly grateful to friends who have reached out online and in person.

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.