Saturday, April 30, 2011

I will survive - Gloria Gaynor

Are my expectations too high? Maybe "my expectations" are how I try to gain control over this uncontrollable stage in my life? Each time I get treatment there is a communication break down. I call ahead and verify the plan. I do all that I can in my power to help facilitate/ advocate for myself. It is exhausting because something always is missed. So do I need to change my expectations and assume something will go wrong and be pleasantly surprised if it doesn't? When do you draw the line between being an advocate and control seeker?

Here are the facts: I finished chemo last night and was discharged from the hospital at 9pm. Up this morning getting myself and little C ready for our trip to the city for my final 2 hour infusion for cycle number 4. My appointment has always been at 9:30. I get dropped off and informed my appointment is at noon. No one told me, can you say, "losing it!".

So I explained my child care is limited for my 2 year old, I live far away and I was not given a schedule, even though I asked for one last Tuesday. I waited for about an hour while they figured out what to do with me. I know there were no nurses available, I wasn't on the 9:30 schedule.

The f'd up part is it's not like I can say, "screw you, I don't need to stay here and receive your life saving drug." Well I could, but I am not an idiot. So ultimately they dictate my time today.

So I started to cry. Sitting in the waiting room crying because I am tired of this and this issue pushed me over the edge. I just want to play with my little guy who keeps saying, "mama come home." I don't want to spend 5 more hours in cancer world. Crying got results. I was genuinely sad, not just trying to get in. Part of me thought I am sure they don't want crying patients in the waiting room. They finally found a place for me, all the others in the waiting room heard my story as the nurse escorted me to my room. I just wanted to let the staff know I really do have a life outside of cancer. I am sure they know but sometimes the system makes patients feel like shit and I had to do what I had to do.

I am so glad I have almost finished 4 treatments. Two more seems very close to the finish line. I can see a field of blooming flowers waiting for me to run through with all the energy I could want. I can seeing going on long walks with my family and not fearing exhaustion or pain. And the list goes on.

For now I am tired, frustrated and still wondering if my expectations are too high. I plan to share the facts with the nurse coordinators about the miscommunication. I also am going to try to let it go. I am a fan of blogging/processing my crap and feeling better already. Thanks for listening/reading.

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Friday, April 29, 2011

Why Become a Nurse?

Check out this video on YouTube:

http://www.youtube.com/watch?v=xjUGhzHgRUk&feature=youtube_gdata_player


A little inspiration today. I went on a walk over to U of W School of Nursing my old stomping grounds. It is amazing the attention you get with a bald head and an IV pole. I met the director of advancement services and the Dean in the hallway. We had a great conversation exchanged contact info and was informed about this inspiring nurse in the video attached. She is coming to speak at UW soon. This is for all the nurses!

Sugar May Be An Empty Nutrient, But Is It Poisonous?

Sugar May Be An Empty Nutrient, But Is It Poisonous?

Blogs that make me laugh

http://kellyoxford.tumblr.com/

Why I like this blog, the following twitter posts, nothing like a little humor to get you going. In my case steroids too!

"Web MD is like choose your own adventure book where the ending is always cancer."

And

"When Foreigner sings ' I wanna know what love is' , you know why they don't.

http://www.scarymommy.com/

A lovely web blog "taking an honest look at motherhood". With an interesting and hilarious confessions page.

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Pour some sugar on me- Def Leppard

More hospital adventures. I have a few things on my mind. I slept 6 hours which is successful for a hospital stay. 10 hours left to be infused.

I had a lower hemaocrit again but then it climbed back up today. The rule is not to obsess about my labs. My oncologist said, "we treat the person not the number." that is good to hear. My cold seems better. Still some crackles in my left lower lobe. A nurse gave me a fancy medical devise called an "acapella" it is a plastic thing you breathe in it vibrates and supposedly loosens your lung secretions. It seems to work. I'll add a picture.

I have been a little worried about what I eat. Being sick I wanted comfort food and coupled with Easter. The sugar temptation was strong and winning. Not to say it isn't okay to have treats. I just would like to eat a little healthier. The meals help tremendously with this effort. I just have a mild/raging sugar addiction. It sure tastes good going in but has a tendency to produce lots of guilt too.

Some of it is normal societal healthy eating pressure. Some of it is cancer fear, if I don't eat healthy I am decreasing my chance to heal. The final stab of guilt is due to history. The old pattern of how I eat when I feel sick or have certain feelings. I think most of at one point or another we have all stuffed a feeling with a cookie. Or rewarded yourself with sweets for a job well done.

Food is not an evil force but there is sure a lot of feelings, control and patterns wrapped up in eating. I know, It all comes back to good ole balance and moderation. Being mindful of what we eat, most of the time.

For me, I need to have compassion for myself and my not so mindful choices sometimes. Guess what I am not perfect.
I was advised to smile at my meal every time before I eat. A way of giving thanks and just giving some love to what is going into my body. This is true for any of my food choices. It also helps bring awareness to whatever I am about to eat.

It is still a challenge to stay on the health wagon without getting to controlling or obsessed. Welcome to what it's like for most women in the US.

I wonder with the rising obesity rates in our country what type of emotional starvation people are facing. I know that it is an intricate puzzle but I am most curious about the emotion and spiritual connection to our food choices.

My chemo bag is adorned with heart stickers. I sent love to the chemo. Now if they would quit drilling into the wall in the next room. I asked and it looks like the pounding and drilling will continue until 2pm. So I am up for a new room. Not sure I can deal with 5 hours of construction next to my head.

Found 2 new hilarious mom websites/blogs. I will post them under inspirational links.
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Thursday, April 28, 2011

Down Under - Men at Work

I am back in the joint... Hospital. Prepped for chemo waiting for the pharmacy to mix the meds. I imagine this three hour process taking place in a basement with a big black caldron. I see fog and jars of eyes of newts and pharmacists that look like witches, concocting a special bubbling brew. The reason it takes so long is due to the cooling process otherwise it would be ready in 15 minutes.

I ordered some food. Husband and son are off to the aquarium. Canyon slept with us most of the night. So I am sleepy. Still coughing and have a plugged ear. More later.

Sunday, April 24, 2011

you light up my life- anne Murray

Day 12 of the phlegm train. I am feeling better. Still tired by the afternoon. Still can't hear properly but there is some improvement.

My head has been so stuffed that I feel like I don't have room to think. I rearranged help and child care next week in the hopes that I will be up to getting Chemo. If I had to go tomorrow, I'd say no way.

We had a fun family Easter weekend. Little C ate his first jelly bean. He started to chew it up, looked at me and said " I don't like it," spit it out and handed it to me. This is the only time I have wondered if he is my child. He also blew his own bubbles for the first time and was truly thrilled by this feat.

The one "adult song" that he knows the words to is Bob Marley, Don't Worry bout thing. He chooses to sing this song when things get busy or stressful. I think/know part of the reason he is here is to bring light into our lives. He is inspirational!


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Thursday, April 21, 2011

Chemothera"peep"

The Glamorous Life - Sheila E

The pain continues. I have an ear infection now and am back on antibiotics. I was hearing in echo, then underwater and now ringing. My head hurts. It is day 9 of this illness. Come on immune system, I am on your side.

My head has been so foggy as have my thoughts, I just want to veg out on tv or internet, which is opposite of how I feel post treatment. I have little inspiration.

Well I have had a small amount of inspiration. I have always wanted to enter the peeps diarama contest in the Seattle times. You know the marshmallow bunnies and chicks that look highly unnatural, almost florescent and radioactive. I always miss the deadline and this year was no exception. I realized I don't need to enter the contest, I can just do it for fun. So I created a little peeps scene that reflects my Easter plans, that have been changed, but I feel it is still appropriate. See next post.

Happy Easter and happy healing

Wednesday, April 20, 2011

Just what I needed - Cars

Will it ever end. The cold that lingers and evolves. On day 7 of my illness. I felt energetically better today. My lungs are junky, my cough is continuous and this evening when I blew my nose I felt a little squeak in my ear. The pressure has been building and I can't hear. Wow ear pain hurts. I am lying in bed elevated with a heating pad on my ear and I downed some decongestion cold medicine and ibu, let's hope this relieves the pressure/pain. It must be working a little because I am writing.

After talking with the oncology nurses it was decided that my body is not well enough for chemo this week. So my remaining 3 treatments are shifted forward a week. Good for my body bad for my desired schedule. My schedule is one area where i feel a sense of control, oh well. So I spent a good part of today coordinating a new plan for this next week. On the bright side I will be able to enjoy Easter.

stay tuned I haven't updated the care calendar yet.

Despite my illness I felt blessed with support and yummy food today. Yesterday I thought I would go crazy spending one more day in the house. Today was full of visitors and phone calls, just when I needed it. The universe knew what I needed. Thanks

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Monday, April 18, 2011

Lets go to bed- the cure

Since I am still sick in bed with junky lungs and a tired body, I thought it is appropriate to look at some of the bed options out there. We all spend a lot of time in bed, mostly sleeping. So below are some theme beds that could make healing more fun, which do you like? I think it is a tie for me between the hamburger bed( yum, except if I have nausea) and the baby moses bed on the beach(it has to be warmer there than here).





Saturday, April 16, 2011

Can't Fight This Feeling- REO Speedwagon

The cold from hell has inhabited my body. This is my "good" week and I am in still in bed and have used enough Kleenex to make a queen size quilt. We all have had a cold or the flu, it is so not fun, itchy eyes, runny nose, clogged head, sore throat and a nasty cough. I feel like a zombie or at least I imagine this must be how a zombie feels, fuzzy in the head.

During chemo recovery I just have a few tired fuzzy days then my mind is ready but my body is still recovering. With a cold, I feel pretty useless and want to be in bed. I started antibiotics because i had a fever and nasty cough and want to prevent pneumonia. Also because I need to be well enough to get chemo next Thursday. Otherwise I have to postpone it for a week. I have help set up and I want to get it done. So please body fight this coldy virus.

I guess one day I will look back and say, April 2011 was the month I stayed in bed. Too bad it wasn't John Lennon and Yoko Ono style. I can say I stayed in bed for world healing (since we are all one), sure why not.

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Thursday, April 14, 2011

Dog Days are Over - Florence and the Machine

The aftermath of good news results in a bad chest cold and exhaustion. All the anticipation, stress and repercussions of the PET/CT scan day wore me out. Cancer is an exhausting disease. I am cancer free but the energy it took to get here, holy smoke. it is thrilling to know my scan is cancer free. It also brought on a whole variety of emotions. I never realized how hard I have been working to survive. Instead of a desire to celebrate the good news, I feel like I want to sleep for a month. Finally, I can relax a little. I am not on my way out anytime soon. I can rest. I can rest. I can rest.

So today I am sitting on the couch with my tea, snacks, lozenges and a box of Kleenex watching episodes of A TV series I like. Cheers to veggin out!

thank you again for all the support!

Tuesday, April 12, 2011

Tell Me Something Good Continued

I played the Beatles on pandora during the scan. I actually napped and felt fine. Post scan I had to wait 20 minutes to prove that I would not have an allergic reaction. Each person I encountered during my scan explained the process so well, but because I have done this no less than 6 times I kinda know what to expect. I listened to the explanation again and again thinking maybe I'd learn something new but it was the same. Finally I cut off the nuclear tech and said, "you are very thorough in your explanation but I have done this many times before." Is that rude? I also found myself a little impatient with the LPN who was starting my IV, taking his time like it was brain surgery. Just do it already. I guess it boils down to it sucks being a repeat customer of the cancer center. It is not the kind of place that you want everyone to know your name, but right now it is my frickin' Cheers. ( one of the techs new my name, darn it.)

Later I waited to speak with the nurse coordinator ( only a 35 minute wait). I checked in with her about my labs which are all looking good for a cancer patient. I spent the rest of the day out in the world waiting for my radioactive self to deactivate. I had 10 hours to stay clear of cuddling with kids and pregnant women. Every time I entered a store I set off the alarm. I was so alarming.

Today I couldn't remember my appointment time for tomorrows oncologist visit. To cover my bases I left a message with the front desk, scheduler and nurse. It is so hard to reach a human. They all called back! The nurse left this message. "Alexis your appointment is at at 1 pm tomorrow and I have to tell you your scan looked beautiful! We were all so excited to see your clear scan results!"

Yep, it's working! There is no evidence of cancer!!! Finally, some good news, thank you the powers that be. I am so relieved. Can you say: exhale. When it's good, it's really good!

I can continue on with 3 more treatments and be done. Exhale, inhale and exhale, Amen!

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Monday, April 11, 2011

Scan time

Here's the play by play. 2 sticks and Iv is started. 5 tubes of blood and one cup of pee for labs and now the lovely drink below, before my radio active injection. Tastes like an Italian soda minus the soda or watered down slimy milk sugar. My blood sugar was 80. Once I get radio active I am banned from reading and typing. Then on the machine for an hour of scanning. Pet then ct, with another injection that makes you feel flushed warm and like you peed your pants. I am going to play some good tunes during my scan.

Sunday, April 10, 2011

CHAKA KHAN/ RUFUS - LIVE - 1974

Dedicated to all the docs, nurses and radiologists, lab draw and techs.
- Tell me something good!

http://www.youtube.com/watch?v=in1TFrAoLUY&feature=youtube_gdata_player


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Tell me something good- Rufus & Chaka khan

Good morning. I am getting ready for a semi epic day. I am trying to balance the events with rest and pace. In my past life I would try to fit in as many activities, chores events into my day and i could do it. Now I have to consciously look at the whole day and make a plan. To add to the formula today I have to eat low sugar, low carbs and no exercise or eating and drinking after 10 pm. The scan rules. I will top the day off with a drive to Seattle and general anxiety about tomorrow. An interesting day ahead. I warned my husband that the controlling beast will pay a visit. Also I will probably get irritated by things being out of place in the house." Don't you know all the shirts go in this drawer?" Real important stuff.

Yes, those are my "coping" skills. Some skills better than others. It is so much easier to try to control my environment than what? Sit around worry about the scan that I have no control over. Think about the results that could again change my life. I am tired of scans and results. Tell me something good. I want to thoroughly enjoy my neices birthday party and our friends that are coming to help with our yard. I don't want to think about my scan. So my coping skills ignite, be gentle on those I love.

Wednesday, April 6, 2011

Bloglift

Decided to give mamacan a makeover. New and fancy energy! Fire it up!

Limbo Party

She can do it, and with a smile!

Neutron Dance - Pointer Sisters

I feel pretty decent today. I want to be excited about it, but I never know what might be coming round the corner. The sun is shining in my room. It is really cold, but the sun is shining. I tried to nap, but couldn't fall asleep. My mind is feeling ready for action, but my body is not. My mind keeps trying to convince my body that I can do more. However, I know if I do too much I will pay. And so the waiting ensues.

Limbo is my word for the day. Living in Limbo. I choose two definitions for Limbo that apply to my situation. The first is "an intermediate place or state". I am waiting in limbo to feel better, to be cancer free, to have energy, to go back to work. It is hard to make "future" plans living in limbo. Of course, the other side of the limbo coin is to " live in the here and now" and live it up because we never know when our time will end. That is easier said than done. I feel alive and appreciate what I have but not knowing how my energy level is from day to day is limiting. The art of balance.

The second definition of Limbo is undoubtedly, "A West Indian dance in which the dancers keep bending over backward and passing under a pole that is lowered slightly each time". oh yeah baby! I am living limbo and that pole I am dancing under is an IV pole draped with chemo. Each time I pass under that pole I am relieved I made it to the other side. You bet i am bending over backwards to make it. I will dance all day and night to be done with cancer.

Monday, April 4, 2011

Freedom - George Michael

Another day of rest. No blood needed. The nurse wasn't supposed to draw my labs on Saturday. my crit was probably diluted from all of the hydration I received. next Monday I have a midway treatment PET Scan, they will check my blood again then. I will get my PET results on the 13th if all is well I will continue on with my 3 remaining treatments. If there is evidence of more disease then there will be a new plan. I am really looking forward to next week (sarcastically commented).

As I learned in a recent workshop I attended. Health is about waking up to yourself. No matter what my results are I am waking up to myself. Results are only information. I get to choose how I react or act on the information. (this is probably the beginning of a series of pep talks/writes over the next week, whatever it takes.)

Time for clariton and maalox. I also have to comment that part of my healing puzzle today includes knee high socks with green dinosaurs roaring and a tshirt with organic beets from PT farmers market. Beating cancer through fashion is important too!

Sunday, April 3, 2011

Good vibrations - Marky Mark and the Funky Bunch

Today was a bit rough. My energy is minimal and belly is grumpy. Things are moving but I have been loving the maalox and miralax. My new adopted twins.

Left a message for the onc nurse about my low crit. The nurse on Saturday didn't have the parameters to know if I needed to get some blood transfused. No emergent symptoms, so I am back in Bellingham. May need some blood tomorrow, we'll see. It would be nice to have more energy. Vampire alert.

Please send energy vibrations my way
Thank you

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Saturday, April 2, 2011

My dynamic white blood cells

Cells transforming cancer into light and energy! Good job body.

Chemo # 3 close to complete

I am waiting for my final infusion. Orders weren't in the computer and they needed more labs. My crit is 25 . Welcome to low energy. I have never had labs drawn day after chemo. It will interesting to see the changes.

I am tired and took some Ativan to help me rest. Spent a lot of the night peeing. I think I will be here for a while. Sipping on miralax and getting hydration. Go mama go!

Canyon is hoping to ride the train. I hope to join him this afternoon if I can rest. More when I wake up.

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Friday, April 1, 2011

Feeling tired from my hot chemo date

One - U2


I found this last night when I couldn't sleep, blaming it on the steroids and beeping pump.

I like it for a lot of reasons. First as a patient in the medical system I am only  one person but I am connected to the whole world and my treatment effects you too doctor and nurse. So my persistent, possibly neurotic need to know details is about my life, my family, my friends and you. Who knows maybe you leave my room thinking, wow, that is a proactive patient, how great. She is really working to heal. But my guess is you are in a hurry to see the next patient and don't have time to reflect. As a nurse, I understand, I have been there done that. I my ideal medical world there would be a little more mindfulness, soul and less rushing around.

Secondly, I think of my parents. They brought me into this world. I was an innocent and pure infant that brought them love and joy. To me they were my world as a child and i am sure I was there world too. As I am now claiming to be a grown-up they are still my world but it has expanded to my own family.

My own family and my spouses family. I have a husband who loves me, relies on me and knows me better then anyone. He is the world to me and I am the world to him. When We became parents we learned in another way what it means to be the world for one person, our sweet baby  Canyon. He is also the world for us.

I am one person who will continue with all my strength and courage to transform this cancer out of my body mind and soul because I am the world for someone and someone is the world for me. 

You are the world for someone too. We are all one. (Am I getting too corny now? Well whatever works. Bring on the corn)

Can you imagine away cancer?

Interesting article about the man who wrote The Kings Speech.

http://www.cnn.com/2011/HEALTH/03/03/ep.seidler.cancer.mind.body/index.html

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