Thursday, March 31, 2011

Born This Way - Lady Gaga

Well, I should have looked at my iPad earlier. I need a computer to set it up. No iPad in the hospital this time.

I am resting in my bed. Watching Sixteen Candles, again. Sometimes I live in the past, or really enjoy reminiscing with pop culture of the eighties and seventies. It makes me smile warms my heart. Intellectually, I think it reminds me of a time when things were easy, when I was a kid and my job was to learn and play. I didn't have much responsibility or heavy concerns. I wasn't aware of the suffering in the world. More innocence and less judgement. However from my Heart, listening to and singing these songs of the past lift my spirit. Give me energy. So I will follow the bliss.

My mini altar is set-up. My chemo bag is stickered. My fake candle is flickering. The healing is in full force.


Sent from my iPhone

More healing tools

Easter meds to be festive! Lovely hydration

Loving my cancer fighting chemo!

Round 3 and I am giving my love to the all powerful chemo that is helping my body change my cancer into life producing energy instead of a dark energy sucker. Giving credit to one important piece of the healing puzzle. Go chemo, go white blood cells.

Today there was a hospital bed ready and waiting for me. I was so excited not to have to wait. Excited for chemo, huh. I may actually be out of here by 5 tomorrow.

I am about to open my new birthday IPad and do some more writing, stay tuned.

Sunday, March 27, 2011

Say You Say Me - Lionel Ritche

I am back. I took a blogging birthday hiatus. Turning 40 isn't easy. Not only did I turn 40 but I went into work on my birthday and the next day. You know you are a cancer patient when... you want to go to work on your birthday (doing something routine and normal). At work, I was surprised with a lovely celebration and cake from my coworkers. I worked on a project and felt like I contributed even if it was for a brief time. I am so lucky to work where I do right now. So that being said my physical self is doing pretty great!

I have always loved birthdays and feeling special and treating myself on my special day. This time it was more of an emotional roller coaster. A theme I have gotten used to for the past two years. I am excited and proud to be 40 but thoughts of mortality snuck into my head. All those unproductive thoughts like, how long do I have? I don't want to die, basically more fear. I want to live a long time but ultimately I don't know when it will be my time, none of us do. Look what happened in Japan. One minute your life is going great and then you get hit by an earthquake and the aftermath. Honestly if I take time to think about the suffering of people all over the world, I remember how privileged and lucky I am (cancer still sucks).

When I was in the Peace Corps, I remember spending time/working at the local health center. One of the services they provided was food and care to malnourished children. I distinctly remember this young girl, she must have been 4 and she was severely malnourished. She looked weak and was mostly peeling skin and bones. This was because she didn't have enough of the right food. She would eat but there was no protein in her diet. Her mother didn't have means or knowledge to provide her with the nutrition she needed. She was getting treated at the health center but she didn't make it. So why am I telling this sad story. I don't really know. I think it is because back then I assumed she would recover. I was 25 and didn't know anything about death and just believed everything would work out. I had never had tragedy or hardship in my life. I didn't know her and I met her family for 2 seconds and we didn't even speak the same language. However her image has always stuck in my head. Maybe it is guilt, was there something more I could have done to help her and her family. I don't know. Maybe subconsciously it propelled me into my career of becoming a nurse and helping women and children?

The beauty and challenge about being human is you can never fully understand why things are the way they are. The work is to let yourself delete the need to understand, or at least that is my work these days. The art of letting go. I don't mean letting go of my fight with cancer because I fully intend to do my best to eradicate cancer from my system. I mean letting go of the pressure of mentally trying to figure out why I have the path that I have. I was put on this path for some reason and it has been transformative in so many ways. It is not an easy path that is for sure. Lately, I tell myself "Be Your Path", go into the heart of the fire. Now that I have made it over the birthday roller coaster I am back to my job of waking up to myself and taking a break from yummy birthday cakes.

Monday, March 21, 2011

Your the inspiration- Chicago

There is a lot of sitting around, aka:healing and resting going on. My body can't handle the pace of Americans. My mind gets impatient. Sometimes I feel like I am wandering a bit, lacking direction. So this week I am going to attempt to go to work and at the same time listening to my body's signals to not over do it.
I am in bed most nights around 7 or 8. It is an exciting life. Tonight I feel like I need some inspiration, so I googled "inspiration". Here are the top six images that matched my quest:










Saturday, March 19, 2011

Super Hair Mary


This looks like a fun way to pass some time...

Moonshadow- Cat Stevens

My love is as big as the supermoon of March. It is 14 percent brighter and appears 30 percent bigger. Happy supermoon everyone. I look forward to seeing the next one in 18 years.

We: Canyon, my dad and I made it to the park today. I actually participated in the world outside of my house for a full 2 hours. It was sunny and crisp outside. Canyon kicked the ball, swung on the swing and slid down the slide. It gave me energy. The "rest" of the afternoon was resting. My stomach felt funny which led to more resting. I watched the clouds and sun. I listened to birds singing. It felt like spring has sprung.

I spent some time pulling out some of my remaining clumps of hair. Some hair is actually growing on my head, not enough to cover any surface area but a few strands here and there. I like to think of my hair (or lack there of) like that of a newborn. Sometimes babies are born with a lot of hair, like Canyon. Then as they grow, they lose all or most of their hair, and then it comes back. So I am in the newborn/infant stage of hair growth. On the other hand, I am going to be 40 and bald next week, happy birthday to me! I don't really care much about the hair. Sometimes in public people are seem nicer or kinder to me. I believe it softens people a little bit to see someone "struggling" or "sick". Some people can't deal and don't want to make eye contact or even talk to me. Some people are probably busy in their life and don't think twice about it. It's all normal. It is just interesting to have an illness that people can see. I remember going to the relay-for-life event years ago and seeing a bald mom with a child and feeling very sad about what I saw, it brought me to tears. Now it is me the bald mom, it really is not that sad. Well, sometimes it is but feelings always change. Thankfully my love is as big as the supermoon so I can be a supermom, superwife, superkid, superstar.

My dad was here for the week and we were sad to see him go. Grandpa Mike got his fair share of trains and cars playing with Canyon. He was so helpful during my "black" week. He was also a dynamo organizer and he was fast. I would turn around and everything had a place. Having order gives me space to relax, now I don't have to worry about all the "stuff" in my house. It is either gone or where it needs to be. I just get to heal. Thank you dad for your help and love. We needed it! Get some rest.

Thursday, March 17, 2011

Energy and Water

Electric Avenue - Eddie Grant

Happy St Patrick's day to all. I am looking for a little pot of gold at the end of my rainbow. My pot of gold is near empty today. I am wearing rainbow socks in honor of the festivities but no green beer for me. I suppose if I had gold sparkle shoes then I could say that I have found two pots of gold at the end of my rainbows. Okay I am a little delirious now.

I am tired (big surprise) and my energy is low. The long acting meds have finally wore off and now I am trying to regain my own center. I have been down most of today and full of phlegm. I think I must have a histamine response to the nulasta medication. The claritan doesn't seem to touch my sinuses? hmmmmm. A little bit of nausea but a heck of an appetite.

I did just walk a two block loop and the buds were a little brighter today than yesterday. It is amazing what light/sun can do. I have respect and awe for energy/light and water. Having so little energy I just savor any little oomph I feel in my day. I want to save that little bit of zing for my son.

Water has been my bed side companion. I sip it all day and then use the bathroom all day too. However, I know my body is so much better with water. So amen to water and energy, may we all be blessed with lots of clean water and glowing energy.

I will have to write more later. My energy stores are flashing time out, you need to rest.

Tuesday, March 15, 2011

Under Pressure - David Bowie and Queen

Watching the stormy weather from my bed. I can see the crane working hard to help construct the middle school. I hear lots of "back-up" beeping noises. The same noises Canyon makes while he is playing with Rojo his fire engine. Every once in a while I see a bird swoop by. I see a few trees that are tight with blossoms almost ready to burst. "Please just a little sun," they plead to mother nature.

I feel more aches in my bones. It feels like a constant buzz of energy is traveling through my bones. The white blood cell production team has ramped up to protect my body. We can do it! I see the team sitting in a boat, rowing in unison, gaining speed through my lymph system. Go team white!

Fatigue is my friend, as is phlegm. I tried to watch a movie, it was boring. I rested with a guided healing meditation. It was helpful and relaxing. The balance is on, to conserve and heal and open and expand.

My dad is here to help. Everyday, gifts seem to appear on my doorstep, books, cards, food, flowers. All the energy and healing this community shares is incredible. I am so blessed and beaming with gratitude.


Sent from my iPhone

Monday, March 14, 2011

We Belong - Pat Benatar

I am home in Bellingham. I need to sleep. I feel so much better this round, so far. Lots of fatigue, little pain and a little bit of nausea. So far so good. I am keeping my little chemo diary to improve this process as much as possible. Now my job is to relax and heal. Goodnight. Happy Birthday Mom. Thanks again for all your love.

I even walked around the block today! Go A go!

Sunday, March 13, 2011

Footloose - Kenny Loggins

Day 3 of infusion. I had a great up beat nurse today and all went well. I am tired from the process and the iv ativan but no extreme bone pain, maybe the ibuprofen will prevent the intensity. Such an experiment. I received a liter of hydration too which was a new addition to my treatment. I only peed once, so, yes I was dehydrated. I am trying to drink more water, more water.

Canyon wanted to rest with me today too. He laid in bed and ate all my apple slices and told me all about his trip to ride the monorail and red car/trolly. He loved riding the big trains with papa.

I just finished birthday dinner for my mom and feel semi normal. I think the hydration piece is key.

After doing more research on the drugs that are fighting my cancer. I have learned that I am getting treatment from a tree, mouse antibodies and platinum. So My thought is I need some art creation that includes a tree, platinum and a mouse.

Well the time for more meds.
Sent from my iPhone

Saturday, March 12, 2011

Yew Tree Link

http://www.whitedragon.org.uk/articles/yew.htm


Link to the magical and mystical history of the yew tree that makes Taxol, the chemotherapy du jour. Thank you Yew tree bark. Yew are wonderful! Do yew get it?

The Way I Am - Ingrid Michaelson

Good morning amazing people. I had a decent night. I was uninterrupted from 11:30 until 7:00. I actually slept 6 hours with lots of trips to the bathroom. I did not wet the bed once. My threshold for success is...what it is. I am happy to have a pain management plan and bowel management plan. Prevention is power! I gave my chemo bag and pole a big hug this morning and thanked it for doing its job. I think next time I will bring some stickers to decorate my chemo bag and hydration bag. Like a little blessing or just to keep it fun. Like Tom Hanks and his ball "Wilson" in Castaway.

I have been getting the VIP treatment since I was bumped from Thursday to Friday for chemo. The nurse manager apologized many times gave my husband some free meal tickets. I have had great nurses. Saw my oncologist twice and actually was able to appreciate her and have a heart to heart talk. She reminded me to appreciate my hubby too. She said she sees a lot of hubbys and mine is a solid rock and a real good one. I agree. We need more us time, regular dates. I am very lucky my hubby loves us and is a warrior for his family, like I am a warrior fighting cancer.

I will be here until 5 or 7 getting chemo. Than infusion tomorrow and the dreaded Nulasta shot is tomorrow. I will rephrase that my friend the nulasta helper shot is tomorrow.

I just feel extreme gratitude today. Thank you everyone and the pacific yew tree bark.


Sent from my iPhone

Friday, March 11, 2011

Chemo #2 - just the way you are

Just the way you are- Bruno Mars

I am in the hospital getting round # 2. I am tired from the process of just getting here. It's a day late start. I am getting taxol right now. I was medicated with iv benadryl instead of pill form and as soon as it hit me I was out. I couldn't keep eyes open or talk.

I need to rest and I don't have much emotional energy to compose my blog today. So I am going to conserve my energy and write more tomorrow.

Work your magic chemo cleaner!

Sent from my iPhone

Tuesday, March 8, 2011

1999 - Prince

Today I almost felt normal. I wasn't too tired and actually went out to dinner. This what "they" said would happen. When I start feeling good than it's time for chemo again. I am ready and more prepared. I hope for a quicker recovery this time.

Highlights of today:
I had a dairy queen ice cream cone at 10:30 am. The gal helping me said she had already sold two blizzards that morning!

I gave Canyon his evening vitamins and he said "awesome mama". Not sure where that came from but it made me laugh. So he kept saying it.

I realized I need to eat more red meat. I have been dreaming about being a vampire and drinking blood. I have low iron, so I think the message is eat some red meat. Gain some energy.

Being blessed with friends and family who are so supportive and being grateful. Making some thank you cards.

Having no shame about eating a dairy queen ice cream at 10:30 am.


Sent from my iPhone

Monday, March 7, 2011

Like a Prayer - Madonna

The word for the day is "Anticipation". I looked up the definition of anticipation and this one fits: visualization of a future event or state (upcoming chemo #2 this Thursday, Friday and Saturday). The second definition was appropriate too (pertaining to music): the early sounding of one or more tones of a succeeding chord to form a temporary dissonance (suggesting an unrelieved tension requiring resolution).

Anticipation set in today for what lies ahead. I am mentally adjusting to the fact that I am going to be down again, in pain and unavailable to my son. It seems so counter intuitive to take a medication that leaves you bed ridden for 5+ days. This time I know what to expect and have a few more prevention plans in place. However, there is still an element of fear and dread (ya, think). It is not in my nature to surrender my body to being out-of-it. I like to be in control. I mean don't we all? That's what my ego keeps telling me. Thanks for the support ego. Oh, also, I am not a fan of pain. We like comfort in our culture. We were raised to be comfortable. I value comfort.

The mind is a powerful tool and I am trying to change my perception of chemotherapy. I want to feel confidence and trust in the chemotherapy that it ultimately wants me to be healthy and is trying its best to help me, but is a little rough around the edges and is not perfect, like humans. We are not perfect, that is what makes us so interesting and human. Okay, so I will try to have compassion for the medications that are trying like hell to kill cancer cells. I imagine chemo being an over zealous house cleaner. It is trying so hard to do a good job, that it happens to clean the nooks and crannies that are not meant to be cleaned. Like using too much anti-bacterial hand soap when just plain soap is just fine.

So full of anticipation I will expect the best because the world is on my side. Quote for the day:

"There is a common misunderstanding among the human beings who have ever been born on earth that the best way to live is to try to avoid pain and just try to get comfortable. You see this even in insects and animals and birds. All of us are the some. A much more interesting, kind and joyful approach to life is to begin to develop our curiosity, not caring whether the object of our curiosity is bitter or sweet. To lead to a life that goes beyond pettiness and prejudice and always wanting to make sure that everything turns out on our own terms, to lead a more passionate, full, and delightful life than that, we must realize that we can endure a lot of pain and pleasure for the sake of finding out who we are and what this world is, how we tick and how our world ticks, how the whole thing just is. If we are committed to comfort at any cost, as soon as we come up against the least edge of pain, we’re going to run; we’ll never know what’s beyond that particular barrier or wall or fearful thing."
— Pema Chödrön

Hello fuzzy head

Saturday, March 5, 2011

Lucky Star - Madonna

Feeling pretty good today. It was a quiet day. Mostly did the mommy thing, lots of playing and book reading with little C. Tomorrow is my cancer diagnosis anniversary, for what ever that is worth. 2 years ago on March 6th my life changed forever (so dramatic). I am going to celebrate by shaving my head (sounds thrilling). I don't want to rehash the horror of being told I have cancer while breastfeeding my an 2 and 1/2 month old infant (and I just did).

I am lucky to have such a wonderful family. They have been there for me every day for the past 2 years. This is also true for my friends and co-workers. I am really lucky to have the support that I do. I am blessed and so grateful. Lots of light to everyone

Friday, March 4, 2011

Doctor Doctor- Thompson Twins

My labs are in. They haven't changed too much which I will take as a good sign. A few lows and a few highs. I am most curious about my white blood cell (WBC) count because of the Nulasta, WBC enhancing drug, injection that I received. My WBC was low at 3.4 prior to treatment and my most recent draw it was 8.8. The shot obviously worked. It is nice to see a concrete number result for all that pain. My question will be do I have to have it again. I get another lab draw on Monday, so I am curious to see if it changes. I am my own experiment. The other low was my hematocrit (HCT) RBC, and platelets. No wonder I get so tired. I wonder if I take some iron if my HCT will bounce up a little? Again my own personal experiment. Having labs drawn so much it is interesting to see if anything changes, that's the nurse in me.

The patient in me has been having symptoms in my lungs on and off. They feel tight, tired and sometimes I feel out of breath. They are clear sounding and my pulse is normal, my color looks pretty good too. They just feel like they are tired after too much use. Maybe this is what it's like to have asthma. I talked with one of the nurses about my symptoms. They are not concerned unless I have a fever or am coughing up colored phlegm. I asked if I have to get the Nulasta again? They said yes, to help build you up. Well, news flash, I ultimately get to decide what goes into my body. Even though it doesn't feel like it. I also discussed my labs and all they really wanted to say was they look good. What I really want is to go through the list with a fine tooth comb and discuss each result. I want details, it sounds kind of neurotic, or because I am a nurse and a patient. Well it is neither of those reasons it is because this is my LIFE we are talking about here! I know one set of labs is not my "life" but I want to be treated like a patient and a nurse. I want to discuss the reasoning of the labs. I want to know if my protein/creatinine ratio is high because of the chemotherapy or if I should be concerned? Maybe they don't know. They said they are looking at the trend. Well it trended up and in my professional opinion that is because of the chemotherapy and I am a constant risk for dehydration. I am not an oncology nurse nor do I want to be one, but the universe sure wants me to learn about it.

Time to come up with my own care plan again. Just called the local oncologist that I am trying to arrange to be my back up when I am here in Bellingham. They have not received my records that I request be sent on Monday. So now I have to call back the nurses in Seattle and see if they faxed or mailed the records. I know I have over 200 pages of records. Yes, I am one of those with the big file. What about electronic records anyway? Well, I guess Monday I will be calling to verify that the records were sent, asking for a detailed discussion about my labs and trying to set up a consult with the local oncologist. I know I should make a calendar and organize all this crap but I am tired of it right now.

I still have my hair but it is starting to fall out. I see a shaved head in my near future. I watched Airplane today. I have this huge assortment of movies to choose from and I chose Airplane. The classic humor is just what I needed.

"Surely, you're not serious?"
"I am serious and don't call me shirley"

Wednesday, March 2, 2011

The Promise- When in Rome

My energy is low. I think I need to create a little meter, like the gas meter in my car. Empty to Full. I can adjust it to each moment and I guess the benefit would be to give me a visual.
Ok, creating a meter is not a high priority.

Having down time I have been watching some new children's shows with little C. One that I find quite entertaining is called Wonder Pets. It is very repetitious. Every episode is the same story, the Wonder Pets save an animal. They sing most of the show and teach lessons about teamwork. The main characters are school pets, a turtle, duck and guinea pig. So why am I writing about this silly show? Because one of the episodes had such a lovely message about life. I want to remember it.

The pets were off to help an inch worm who had a caterpillar friend that was sick. The pets arrived and the wise guinea pig, Lenny, explained to the inch worm that his friend,the caterpillar, was not sick but in a cocoon. Soon she would transform into a butterfly. The inch worm was very impatient and missed his friend. So the wonder pets offered to help the inch worm pass the time. They played games, talked and even meditated and took deep breathes. Until finally the butterfly emerged. The inch worm was disappointed that the caterpillar was gone and they could not play in the same way. He wanted his old friend back. He wasn't prepared for this change. The wonder pets encouraged the worm to talk to the butterfly about his feelings and they found a way to transform their friendship as well.

A message so simple and sweet:
Change happens. Be flexible with expected outcomes. Have friends help you through the rough times. We all need a little more patience. When you think someone is sick they might actually be transforming into something more beautiful.

Sent from my iPhone

Spring, I want spring, Peace...

Tuesday, March 1, 2011

We Built This City- Jefferson Starship

So I must be feeling better because I didn't get to blogging yesterday. I do feel better. Still tired but not stuck in bed anymore. As far as lingering side effects I still have some lung issues, meaning they feel stiff and sometimes I feel out of breath. The feeling comes and goes. I have learned however that one of the chemotherapy agents has an affinity for the lungs. If I rest the symptoms disappear. Also, if I take a daily recommended dosage of selenium my lungs seem to feel better too.

It is a true puzzle this body of mine. It is interesting trying to regain health or heal, we all know there is no blanket prescription or remedy. However our bodies have so much in common as far as design, but when dis-ease sets in so does the mystery. How do I get my body back on track? Back to its innate nature of regulating itself to health. I have followed all the recommendations that have been prescribed by western medicine which I believe has been the right choice for me. I also know that it is not perfect. I sometimes feel like I am on the "slippery slope" of healing. My body has been traumatized over and over for almost two years. I am worn down. My body looks and feels different. I have lost some of my reserves and now I am on the "slippery slope" and need the medication to help my bone marrow produce more white blood cells to help with this cancer fight. I do not doubt my treatment but I want more. I want to build not just fight.

I want care that includes a path to become strong and healthy as well as kill the cancer. I want the whole f***ing enchilada. What I am asking for is holistic health not just complimentary medicine in addition to western medicine. Our current health system doesn't offer this in one package. I have to piece it together with a medical doctor, naturopath, acupuncturist, herbalist, therapist, and the list can go on. Creating this holistic package is one of my current jobs by going to appointments and piecing it all together. The question is how do I know what is right or not? I don't, but this is where, in addition to appointments, there's the research component, and the just try something new and see approach. What I am trying to do is balance all the recommendations. I am the only one who can coordinate the information and decide if it makes sense or not for my well being.

The other key ingredient to my puzzle is intuition. Trying to listen to my body and trusting my intuition. I have spent so much of my life working from my ego. If I want to do something than my determined spirit(ego) says, okay, you will do it. It has worked well for me in a lot of my life. It doesn't work so well when it comes to healing. My ego continues to feel invincible to everything and it doesn't pick up subtle messages. I am in intuition training. What does that look like? I don't know. So far it seems to be a lot of checking in with myself and my feelings in the moment. It seems to be more non-doing, less understanding and being okay with not knowing why. More surrendering. I would still love a complete how-to-heal list delivered to my doorstep. Maybe it is right in front of me but I won't know it until later. I guess I am working on building a mystery (there's the song for my post).

Last thought it is 11:30 at night and I should be sleeping and my ego won. I was determined to finish writing this entry, way to listen to my body self! Gotta love being human, right. And I am changing my blog song to "We Built this City" because it is one of the funniest songs I know and I think something light would go nicely with my deep thoughts on intuition.