Winter Wonderland - Various Singers of Christmas Music

When I don't write it is usually a good sign that I am feeling better. I have been lucky to have family here helping for the last two weeks while I recover from surgery. Last Wednesday I had an epic day in Seattle. I had a chest X-ray an appointment with the thoracic team, plastics and the radiation oncologist. Thankfully, it was a day of good news. I am healing well. I was given permission to drive, sit in the front of the car and use my arms as needed, still no lifting my 36 lb boy, but that is ok. The best news was that the margins of my surgery we're microscopically clear. So when we we're seeing the radiation oncologist we were pleasantly surprised that the recommendation was NO radiation! I was thrilled. I was preparing for another round of at least two weeks of radiation. I felt like I could exhale. Doctor appointments are so exhausting mainly because of the emotional roller coaster and all of the waiting.

Ahhh, so what's next. I have this hope that we can have a family vacation and I can just rest and avoid doctor appointments for a while. Focus on getting my leg pain resolved.

Monday I had an appointment with my neurology oncologist, he is in charge of helping me with my nerve pain and neuropathy. So I had an MRI to rule out a tumor and the results were good, no tumor. The diagnosis he gave me was scarring from radiation. Specifically injury to the small blood vessels which have irritated my nerves. That is why my right foot is partly numb. The numbness has also taken over the back of my right thigh. I have started on a fentanyl patch and he has increased the dose to try to cover the pain. It's hard to walk and I have a lot of deep bone pain, it drives me crazy. I am now the lady riding in the wheel chair at shopping stores. I haven't gained enough gumption to drive a scooter/amigo yet, but I am sure I will. The problem is I have to try to keep my leg strong so I don't want to get to used to walking aids. Getting dressed is challenging for me. I continue to be reminded how much we take for granted as able bodied people. My leg pain is the most challenging part of my daily life. There doesn't seem to be an easy fix answer. Just manage the chronic pain. I believe the body work that I have been doing will help. I think that the complementary medicine approach will be where I find possibilities for healing. I never thought I would have so much pain or trouble walking due to a side effect. However my body has been to hell and back a lot in a short amount of time.

The next step is getting another PET/CT. This is scheduled January, 5th. Hopefully it will be clear and I will be cancer free. My oncologist is conservative and that has been a good thing since this cancer has been so aggressive. So through the holidays I am doctor free and feel decent.

Tomorrow I am going to the amazing fund raiser my coworkers have organized. I am excited and nervous. I feel so lucky and blessed. I am enjoying the holidays to the fullest. I love christmas and had help to decorate my house. I have been enjoying Christmas lights and music everyday. My little guy is turning 3 in four days and I am here to celebrate.

Well my pain is ramping up so I can't concentrate very well. Unfortunately my pain is worse when I am laying down.

With exploding gratitude, thank you all who are making this journey a little easier for me and my family. Even sending a positive thought makes a difference. You are awesome.

No Sleep 'til Brooklyn - Beastie Boys

We are back in Bellingham. It's good to be home but a little bittersweet because it sure is nice to have my mom take care of us. Also, at home I look around my disheveled home and feel self-induced pressure to clean and organize. While making mental notes about all I want to "do", I am discouraged and reminded that one: I have limited use of my arms due to "sternal precautions", two: I have limited energy and do I really want to use it on folding laundry, and three: my neuropathy and pain is unpredictable and it feels like walking is like playing a game of roulette, spin the wheel and see if I can walk or not today. So being home reminds me of what I can't do. I imagine most people would love to have an excuse to get out of cleaning their house or grocery shopping. Well as bizarre as it seems, cleaning my house and grocery shopping are a luxury to me, a sign of normalcy.

I am still living in survival mode. I keep thinking about Maslow's hierarchy of needs and I am still at the bottom of the hierarchy trying to preserve my health and deal with pain. I have gotten better at appreciating the "here and now". I have lowered my expectations of outcomes, or should I say, I am more "open" to various outcomes. Having chronic pain really sucks. I don't know how people live with pain, it is really hard.

I am tired of complaining but we have good days and bad days, right? Sometimes my hubby and I just look at each other and shake our heads in disbelief. We get so overwhelmed by our life and the lack of energy that we have, but then that moment passes and somehow we rally and we keep on doing what we do. I try to remind myself that none of us can escape suffering, we just get it in different ways, at different times and in different doses during our lifetime, sounds like side effects from a medication.

Well I have had a rough time sleeping due to pain. I have been thinking that if I have to feel so much pain maybe others will have less. I like to think that there is some purpose to the pain.

Today- Shania Twain

I made it out of the hospital last night about 8:30. After many chest X-rays proving that my lungs are sealed(sounds like the perfect gogo's cover.) after proving my pain could be controlled with oral meds. I am keeping my pain under control with Tylenol and dilaudid. I finally was able to see my little man after 4 days. He was happy to see his mama and I was happy too. I can do most things but am on "sternal precautions" which means no use of my arms for a while. I can't get out of bed without help. Just so glad to have all my tubes and lines out of my body.

I am officially bionic now. Recovering at my moms with lots of help from family. Not stuck in the hospital watching shows about cupcakes and wedding dresses, Having nurses say I need to walk when I just wanted to puke or getting chest X-rays everyday at 4 am. Life is good!

Getting stronger

Not getting as much rest as I'd like but doing well. Surgery went smoothly and after a long wait I started surgery yesterday after 4pm and woke up at 10 pm. They removed part of my ribs sternum and tissue. They used gortex to rebuild my chest wall and used a portion of my pectoral muscle to cover that. Also got the stent for my kidney. I am truly becoming a bionic woman. I have lots of tubes and my pain is well controlled by an epidural and Tylenol. It's hard to move much. I did get up to a chair twice today and the second time was much easier. I am in the ICU because that's where there was a bed.

I am glad to be done. It sounds like I won't be able to drive for a month due to the turning of my body. I miss my little guy and am waiting to have less tubes before I see him. He had a fun day at the zoo with his papa. Thank you all for the love and support as always. I am looking forward to getting home.

Take on Me - Aha

Yesterday was bittersweet. I had the energy and the independence to drive from Bellingham to Seattle. I felt like I was on a road trip, listening to my music and looking a the stunning fall colors. I wanted to keep driving to some little town and go exploring. However my destination was back to the hospital clinic for a  consult with the Thoracic surgeon. Walking back into the doors of the hospital I felt sad. I was the patient, not the nurse, who would be helping others. Not giving information but getting information. I was the one who needs help.

During my consult I learn that my PET scan indicates that there are glowing cancer cells along my chest wall near my sternum. Removing it is not as easy as I had hoped. The moveable tumor below my scar will easily be removed but during my previous surgery, the doctor went between two of my ribs to remove the tumor in my lung and that part is glowing. So part of my ribs, cartlidge and sternum need to be removed. They will use some material, possibly gortex to recreate a "wall" and then a plastic surgeon will cover it with my pectorial muscle. So no outpatient procedure for me, 3-5 days in the hospital with a chest tube.

I scheduled it for Monday. Lets get it done. It is amazing that in one afternoon this procedure was actually coordinated. I will have the thoracic surgeon, his fellow, a plastic surgeon and a urologist working their magic on my frankenstein body. I am getting a stent for my kidney at the same time. I think I am an interesting case because the doc had never seen cancer come back like this, oh lucky me. The docs spent a lot of time looking at my chest and trying to figure out how they could cut and remold me, which was kind of bizarre.

I am truely becoming a bionic woman. I am nervous and disappointed to have to be hospitalized but I know I will be in good hands. I will continue to do what it takes to heal and appriciate the love I have in my life. As always I am grateful for all the prayers and healing thoughts. My body is changing but my spirit is strong. I have to believe that this is all part of a bigger plan and that I must be gaining some soul development through this journey. I surrender to the path.

Halloween exam

A plan is in place. I feel better knowing all my aches and pains have been addressed. Today was a bit surreal being Halloween. I went to the cancer center and people were wearing costumes, dressed as chickens, princesses, and i spotted a giant bag of M&M's on my way to the bathroom. I am a fan of halloween but waiting for my cancer prognosis while being helped by a chicken was a little funny. They also had a cellist playing in the lobby. She played very sad traditional songs. I felt like I was in a David Lynch movie. It was ironically funny.

My oncologist seemed pleased that my tumor was very movable so it's unlikely that it is grabbing on to my lungs. After my exam she also believed that there is no additional concern in my kidney area. Yeah. So I explained all my woes and as mentioned above a plan is in place.

First a stent for my kidney then remove the tumor. See a neurologist for my neuropathy and pain and try out a new blood pressure medication. Then some radiation to my chest and then some recovery. Continue physical therapy and When I am finished discuss a maintenance plan. My cancer is not at all textbook. It isn't fast growing but it seems to come back after three months after my last treatment.

I don't have a schedule yet. Everything is being processed and I am just waiting for phone calls. I am experimenting with some steroids for pain and atenolol for my BP. I am hoping they will counter act each other. So I will feel normal, not tired or amped up. Yes this is my life. I think it is kind of funny some days.

I am also dabbling in the world of logistics and disability income ect... I actually qualified for a disabled parking permit, so rock star parking for me. Ahhh the benefits of cancer.

I feel hopeful and blessed. In my appt. I shared a picture of Canyon, my motivation and inspiration. He deserves to have a mama and I will do what ever I can to be around. I wanted the docs to see my humaness. I am not just a person with cancer. I think they know, but my little guy is a good reminder.

Love is a Battlefield- Pat Benetar

Well the results are in. I spoke with my oncologist yesterday and the scan showed activity/cancer on my chest wall. This cancer is so weird. In January, I had a small tumor removed from my lung. This tumor is located right under the incision scar in my subcutaneous tissue. I can see it and feel it. I have a lump on my chest. It looks like it is trying to get out. I kept thinking that the doctor left a lap sponge or an instrument in there. A month ago I had a dream that I needed a second colostomy in that exact spot. My dreams told me. There was also some activity by my ureter but the doctor feels that is probably due to the hydronephrosis and not cancer. Monday I will have an exam and a plan will be discussed. A referral to a thoracic surgeon to remove the tumor and possibly some local radiation.

I feel relieved that it isn't something worse. I feel validated that my symptoms were telling me something was not right and that finally a doctor listened. (My scan was two weeks early). This cancer seems to have a reoccurring pattern. After 3-4 months post treatment something shows up. Can you believe it 4 times in less than 3 years. I can. Fighting this disease is becoming a way of life. It is crazy. Honestly, I have felt so bad over the past month I don't feel shocked or surprised. I am sad of course and so tired of stress and pain.

What saddens me the most is the stress and pain this brings to my family. I don't want them to worry or suffer. Of course I don't want to die either. I think with this diagnosis there is still hope. I can still beat this disease or if I have to coexist with it for a long long time I Will.

As always I am amazed by the support and love we have received. I am sure I will be calling on you all again for support. Stay tuned for the plan.

Two Tickets to Paradise- Eddie Money

Another day for you and me in paradise, sings Phil Collins. Is it? Or Is it all in ones perception how you view your day, month- Life? Are you living in paradise? I guess we all get to define what paradise is. Right now my paradise involves having lots of energy and being pain free. So I am not living in paradise. My paradise also includes a loving family- I guess I am in paradise.

Really I feel like I am living in a "gangstas paradise", walking at night in a cold city, not the kind of paradise where you are dancing in a field of wild flowers with the warm sun on your face. Is that my choice? Sometimes

How about "almost paradise" as sung by Loverboy in classic 80's hit movie Footloose .Almost paradise, how could we ask for more... I am asking for a lot more. Right now I feel more like my life is a rolling pair-o-dice not paradise. (yes, that was cheesy but it made me laugh and that was a little piece of paradise for me today.)

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Freedom- George Michael

Time seems to be moving slow and fast at the same time. A new discovery or diagnosis has been made to add to my complicated patient profile. My blood pressure has been erratic but mostly stable ranging from 115/80 to 140/95. My pulse has been around 80-100.

Since my last post I saw 3 docs who all gave me different recommendations. Finally I was taken off all 3 bp meds and received 3 days of hydration at the short stay unit in the hospital (Sept 23rd). Still nauseous and throwing up, I made it through. My kidney labs were not so good and prompted a trip to get an ultrasound. The ultrasound indicated severe hydronephrosis of the right kidney. It's not working so well, so off to the urologist I go this Friday. My kidneys have been overworked. So now it mkes sense why my BP has been crazy. My BP is up a little as I described in the first paragraph. My doc said to start one of the BP meds again. I tried it, was nauseous and could not get out of bed, so I stopped taking it. What a mess.

Now I am waiting to learn about what kind of exiting procedure I may look forward to (i.e. A stent placed in my kidney through my ureter). I swear I must have been evil in a past life. To add to the story I continue to have chronic leg pain that is often debilitating.

I want to swear a lot because of the pain but am trying to be creative in my expression of my pain to add some ironic humor to my life and PG rating for the family. So yes if you listen closely that is me yelling in pain, Calico Cat! Mother Theresa! Bartles and James!

Thankfully everything is temporary and will change. Right now I have energy between 10-1 and the rest of the day I need to rest and deal with the pain. Wish me luck that this road will so veer off in a new direction that is smooth and easy.

TNT- AC DC

When you feel stuck, what do you do? I guess the question is what can you do? The side effects from my highway to hell journey never cease to amaze me. I am so tired of the roller coaster. I am supposed to be recovering. I keep thinking about this book that Canyon likes me to read, " It's Not Fair". The main character talks about things he wants to do, like eat watermelon in the living room, but his mom says, "no, you must eat it in the kitchen"- it's not fair. I know it is important to stay positive but sometimes I have to yell out to the universe, " it's not fair!" if one more person says be thankful for what you can do or have, I'll respond with walk in my shoes for a while. It is hard to always take the " be thankful and gratitude road" especially when I am feeling so sick I can't even get out of bed. Can a person be tired of being tired of being tired? Well I will win that trophy. I imagine the top of the trophy has a gold coated person sitting at a small gold desk with they're arms and head flopped down on the desk in sheer exhaustion (A symbol of a persons inability to be awake or have energy while trying to participate in life learning.)

I am living in low blood pressure, heart beating in my ear, kidney challenged, dehydration, nerve pain, tachycardia hell. I am trying to coordinate my care with three different doctors. So for 9 days I have been living in this other reality. A reality where I don't work, drive, cook, clean, play with my son or rarely leave the house. I am being a little dramatic, I have left the house briefly. This alternate reality is not a place I want to stay. I feel stuck. The question is what can I do? So many things and not so many things.

I feel like my life is an a ironical game of "go fish". I keep having to draw, because no one seems to have the matching cards I need to get better. the game is never ending and it feels like I have been playing for decades. Meanwhile, all of my opponents are playing my game and 50 other games all at the same time. Therefore there is little time to focus on just one game. I need to switch games, maybe crazy 8's. Ok I feel better after writing my woes. Luckily everything is temporary,it is what it is, this to shall pass and it's not fair all at the same time.

Don't stop thinking about Tomorrow- Fleetwood Mac

It is a beautiful sunny day. I am going to enjoy it and be thankful. The suffering and pain is part of life I understand. I am open to my process, I welcome healing and know it will be a long road. I do trust that my body will relax someday from the trauma it has faced.I know I can expect things to change. I will continue to cope and find help when I need it.

It has been a year since my major surgery and I am still here. I am a survivor.

Calling All Angels- Train

Dear Nana,

I have been thinking about you a lot. I have been thinking about your life and my memories of you. I am so sad I didn't get to see you before you left to be with papa. I am glad I was able to tell you how much I love you. 

I want to let you know that I miss you and thank you for all that you gave to our family. You were witty and sharp. You were thoughtful and loving. You loved everyone and let us know it. You made me proud to be a Pingree and I always felt accepted and included in our family. A value that I hold on to, " if we're family, than your invited." Your were our matriarch. Your children loved and respected you and treated you like royalty, the way elders should be treated. 

I am going to write down some of my memories so I won't forget them and my son will know how you influenced who I am and who we are as a family. 

I remember visiting nana and papa in Portland. They had a big yellow house at a fork in the road. they had a giant rock in their front yard. Papa kept the yard beautiful. He had a powder blue truck and camper. Powder blue was his favorite color. Nana had a brown car with a velvety dog in the back window who's head bobbed up and down. They had lots of ceramics in their yard that grandma painted. I remember Gnomes, the 7 dwarves. Inside they had the infamous autumn delight furniture. I was given the love seat in college. They had an upstairs and a basement. They always had a " baby's room" . Nana had various piggy banks that collected quarters and dimes in different tubes. She had a light switch of a flasher, it was funny. She would cook dinner and papa would cook breakfast. Papa would always cook eggo waffles and insist on cutting it in pieces for me even when i was a teenager. Nana liked to smoke and she liked coke. She liked to lay in the sun and they often had a pool in their back yard for this purpose. Nana knit her famous slippers that kept our feet warm all winter long. The slippers are still a part of our family.  Papa did latch hook and paint by numbers. He built me a doll house and we built furniture together, that I still have. Nana liked playing her video games: Pacman by atari. 

I remember laughing a lot with my family. I remember playing games, UNO, spoons and other card games. I remember Christmases together. The bird chirp coming from the christmas tree and i could never find the bird. The ceramic christmas tree with peg lights. Going through big catalogs and circling the toys. I remember and have recipes for nana's Carmels and pickled eggs. I remember the turkey and mayo on rolls and cokes she made us for the long drive home. When I would visit she would often have my favorite candy, jelly belles. I remember the surprise party for nana on her 80th birthday. I have more memories that I need to spend time writing down. These are some of the highlights of how I perceived things. 

Right now, I believe that you are at peace and with papa. I also believe that you are there for me, to hold me when things get rough. I know I can call on you for support and guidance. I don't know where your spirit is but I know you are here for our family.

I see you everyday in my blooming dahlias, the wind blowing the tree leaves, in my dad, in Canyons smile, in my slippers and in my heart. Thank you for creating us. The last time I talked with you nana you said you will keep reading my blog, so this ones for you nana. I love you.

Always Something There to Remind Me- Naked Eyes

I had my present moment Saturday, at the farmers market. It was sunny the sound of marimba music was in the background. I was picking 10 dahlia stems to take home. I was surrounded by brilliant colored dahlias, deep red, orange with pink tips, yellow, hot pink and peach. I felt so excited standing there deciding which dahlias to pick. Like a kid in a candy store. I at that moment took it all in and felt alive. I didn't notice my pain, my past or worry about my future, I was NOW.

This road I have been on is still quite bumpy. When I finished treatment I knew it would take time and that the side effects may be rough. Can I just say, fuck yeah, this is bullshit! Yes, I am impatient to get better but can't I get a break. I feel like I have been slowly tortured into insanity. The thought is that I had my big surgery about a year ago and I think I have some scar tissue pushing on my sciatic nerve down my right leg. The pain slowly gets worse. It hurts all the time! There is no comfortable position. Do you know how crazy it feels to always be uncomfortable? It takes a lot of energy just to function. I thought chemo was bad, it was but I knew it would end. So what are my options? I have some nerve medication that made me feel drunk til noon everyday. I asked for a lower dose and it seems to be helping at least every other day. I also take ibuprofen and dilaudid around the clock. In addition to my pain I know have 3 blood pressure medications that seem to work, thank goodness. However they make me dizzy and dehydrated. However, I was able to receive my infusion last Thursday which is a good thing. Am I a complainer, yes I am. I have had to hire some help because I cannot clean my own house or grocery shop due to the pain. When I have energy I want be with my family not dishes. I have been thinking a lot about the importance of quality of life, hmmm you think. have been trying to work too. It's been overwhelming dealing with my health. I have a plan that includes lots of body work. Our medical system has been a bear too. I have three different docs involved in my care and none of them talk, so I have to coordinate and interpret, thank you friends and family for helping me with this one. Okay I am done with my health rant. I appreciate my life now doubt about it, I would just like a little repose from the drama so I can go out with some friends and have fun or go out with my hubby. I will do my best cause I always try.

Save Me - Aimee Mann

Another day of learning and coping with change. My body continues to evolve, devolve whatever you want to call it.

You know how most of us have uneven bodies. Your right bicep is stronger than the left. My right leg muscles or adipose has always been slightly larger then my left, until now. I am dealing with the spread of lymphadema down my left leg to the tip of my toes. Now I have to call my left leg "big leg" a name that was always awarded to my right leg. I make light of it but it is anxiety producing. It comes and goes and the only way to deal is to wear compression hose and see a physical therapist that is booked out for weeks.

Each day I wake up to a new physical reality. Not much I can count on except change and usually pain and fatigue. I am not looking for sympathy it is just the reality. The challenge is to try to have some levity in my day when I am in pain and not sure what is coming next. It is all temporary and will change. Maybe these side effects are exacerbated due to my treatment being so recent.

I just wish I could sleep without pain. I think about the amount of people living with chronic pain and wonder how do they deal. I guess that is where drugs come in for most people. I am not a fan of meds or feeling groggy. I still need them however. I guess we all have pain in our lives. Well I tell you what, if I knew that the pain I experience now would reduce pain for others, I would feel much better about dealing. I would rather be pain free I am not that much of a martyr.

Here's to the mystery of life!

Sent from my iPhone

Eve Ensler: Suddenly, my body | Video on TED.com

Eve Ensler: Suddenly, my body | Video on TED.com

This is a bit graphic but her words about having cancer are amazing. WOW! Here here to living in your body.

The Lady shows us the way

We live in a quaint neighborhood. The lettered streets. It used to be known as the lehtto streets when i was in college , attending house parties and renting with 3 roomates. Now it is an up and coming fixer neighborhood. Close to town but confusing for out of town visitors due to the many one way streets.

On the days that I work, I drive my son to childcare. We have a routine each way through the neighborhood. We wait our turn at the stop light. We pass a yard speckled with chickens. We count the brown chickens and yellow chickens. If they are not in sight, my 2 yr old comments, "maybe they're in the hen house." He comments on the buses and big trucks he sees.

 We have a similar routine when we drive home. The drive home also includes passing a red house with a purple door. My son announces when we pass it. We pass our neighborhood garden and the "lettered street" neighborhood sign. In the garden, my son noticed someone had created a human size woman out of flowers. She changes with the seasons. Now, she is lush with bright flowers and greenery. Earlier this winter,  she was more of a shell of twisted vines and dried looking moss. She wears some blue fabric as part of her dress and a yellow velour hat with a flower. She has no face but she looks like a lady of the garden, with a big hoop skirt with flowers in hand and the hat to protect her from the elements. We call her "the lady". When we drive home she is on our route. Each day my son says, "there's the lady". 

One afternoon on our routine trip home we saw "the lady" and noticed her hat had fallen off her head. It was a few feet behind her in a bed of purple thistles. We decided the garden goddess needs her hat. We had always seen the lady from the car never in person. We finished dinner and started on our mission to put the yellow hat back on "the lady".

When we got to "the lady" she was still hatless. Up close she was a bit prickly despite the vibrant flowers that grew on her body. We picked up her faded yellow velour hat and placed it on her head. She didn't turn into Cinderella or snow white. She was her steady solid garden lady self, weathered yet vibrant.  

It felt really good to make things right for "the lady", To uphold her image of garden goddess. "the lady" is special. Unlike the chickens, you can count on the lady being there every day. She is not polished or nicely groomed. She is weathered and rough around the edges. She is a survivor. She may not look great in the dead of winter but she is there and you can still recognize her in spirit. You can count on a spring bloom and transformation to celebrate new beginnings.

 I am thankful for our neighborhood garden goddess. I am thankful for her realness with the seasons. She has no pretensions, no point to prove. She is stable and present. She is the peace of being. She isn't in a hurry to her next activity. She reminds me to let go and take time to be. she reminds me that no one is perfect. She reminds me to have strength through all weather. She reminds me to be strong and thrive.

We explored her garden, sat in the gazebo and watched cars go by. I enjoyed cherished time with my son, showing appreciation for our community and a reminder to be present and notice.

Keep on truckin

Had a little set back. Sunday night I had a belly ache it progressed into vomiting and a lot of pain, holy moley. So by Monday at 5pm I was in the ER. They found a small bowel obstruction. This can happen if you have a history of radiation, like I do. So with iv pain meds and anti-nausea meds I have been relieved. I am still in the hospital, finally aloud to eat a regular diet. My stomach is still distended but I have no pain or nausea. I have been walking the halls in effort to keep my body moving. I should go home this afternoon.

Wow that was painful, like labor with no baby reward. Thank goodness I haven't needed surgery. If I did or do than I am off to Seattle. But looks like I will be heading home later. Time to go walk. Peace

Carl Honore praises slowness | Video on TED.com

Carl Honore praises slowness | Video on TED.com

Firework - Katy Perry

And here I am back in the race. The busy must accomplish so many things in one day race. Less time to write or enter the creative zone. Again how do I find balance. The big question. I find myself wanting to create a writing formula for my blog. I need to rest. That is what I need.

My scan was crystal clear. I have three months of healing, normalcy and life ahead of me. I continue to get Avastin infusions every three weeks. I am in the process of getting the infusions transferred close to home. My blood pressure is climbing a side effect of the medication. Tomorrow I will start on a new medication to lower my blood pressure. I am nervous about adding medication to my body. I fear a slippery slope. I continue to have siatic pain that wakes me up at night. I was given another medication for nerve pain. I will see a physical therapist tomorrow about my pain. Oh it's a laundry list.

I am tired of my body being the focus of my life, it takes up so much of my time, the unfolding of my survivor self. When I am in between taking vitamins, supplements and medication. I am having brief moments of pure presence and joy. For example, I put hair product in my hair, thrilling moment. Walking because I can. Go to the grocery store more than once a week. Swimming with my son. Being inspired by others. Love for my family. Driving with the radio on. So many moments where I am thankful to just be in the moment, to be alive.

Then 99% of the rest of it is trying to multitask. I appreciate that 1%. Slow down friend that is my advice for you- self.

Scan

CT scan day. Waiting in the reception to drink my oral contrast solution. Woke up to thunder and clouds. Hmmm. Must be a good sign. My poet is accessed, love autocorrect, meant to say port but prefer poet. I have to drink the solution for an hour then a 5 minute scan. Cancer centers are not fun places to be. My appointment and results should be known today at 2pm. Wish me luck!

Reunited - Peaches & Herb

I had a wonderful trip to NC and VA, a reunion with my peace corps gals and families. This was my post chemo reward trip. I hadn't seen some of these ladies in ten years. The bonds we created in the peace corps were deep and real. We went through so much together. When we reunited it was like we were never apart. Our interactions were full of comfort and ease. We resumed our connections immediately and spent time just being together. This was just as I hoped it would be. So beautiful and so genuine.

The bonds we created I think stem from the challenges we lived through in Peace Corps. Being challenged by living in a developing country for 2 years pretty much kills any pretension or bullshit facade. We saw the best and the worst in each other. The beauty is we accepted each other for who we are best and worst, because we were all we had during those two years. In short, we became family. Unfortunately for me, the majority of my PC family lives on the other side of the country. My spirit was lifted from our visit and that adds to healing. So thank you ladies and families. We will reunite sooner than later next time.

I loved sitting on the porch and talking in the sweltering heat. The lighting bugs at dusk. The kids on the slip-n-slide trying to drink the dirty water pooled up at the end of the slide. Henry's laugh and Grey's passion for pirates. Southern fried chicken. Roxy chasing the goats and Ryder's enthusiasm. Isabelle's mindfulness and Elie's expressions. watching the thunderstorm, yelling Kaboom. Dance party in the entry. Going to the swimming hole, we did not sink, no worries Canyon. Stormy Fred's "he haw". front row seats for the fireworks. dinner outside every night. helpful husbands. the joy of being with people I love and love me for me. Thank you friends!

Now I digress back to the present:

Today, my energy is still challenged. This is not a surprise, but I still sometimes refuse to believe that it will take a year or longer to get my energy back. I am still fighting the cough and just worn out from travels, work and life. Today I returned to the medical world for an infusion of the medication, Avastin. This medication is supposed to help keep the tumors away. "Avastin, I greet you with open arms, please do your job very well." My labs looked pretty good this time around which is reassuring to me. The plan is to continue the Avastin every 3-4 weeks for how long I don't know. I am scheduled through the end of the year. This medication has little to no side effects so far. Hopefully just good side effects- extending life.

Normalcy strikes

I am still here. Just returned from my post chemo reward trip. I mostly kicked my never ending cold, thanks to antibiotics. I worked my first full 8 hour day since September. Can you say amazing. I was tearful with joy for the normalcy I felt yesterday. Never been more excited to work. So thankful to have the physical stamina. I will elaborate more on my trip, but life calls right now.

Sent from my iPhone

One Moment in Time- Whitney Houston

So there I was in Target walking between the greeting card isle and the designer lotion isle. A smile came across my face, I had a moment of presence. I was watching people pass me with their carts. Picking up their essential and nonessential items. This was a moment of being normal. Just existing in American society.

In high school, I would not have shopped at target, because I was all about name brands. In college, I wouldn't have shopped at Target because I would be feeding the corporate machine adding to our consumeristic and wasteful culture. Now, today, I am happy to be out of the house. I am happy to participate in our culture, even if it is shopping at Target. I know it is not the most spiritually enriching activity. However today I felt like I was a normal person, not a cancer person. My energy was in the moment not tied up in guilt or judgement about shopping. It was a nice moment.

This Target moment was also about having some energy. I have been sick for the past 8 days and it has been rough. Lots of coughing and laryngitis. I have been silent for the better part of the last few days. My back is really hurting from all the coughing too. I finally got some antibiotics and feel better. I am still coughing like crazy at night but I think this cold will end. At work I am always writing about those that are at risk for various diseases. It is usually premature infants, pregnant women and immunocompromised. Let me tell you being an immune suppressed person can be the pits. This is a club you do not want to join.

Upside Down- Donna Summer

Happy first day of summer, summer solstice, longest day of the year. So how come I have such a short fuse. I have a cold. My lungs hurt and my gut is still in disfunction. I feel tired and sick, maybe that is why. I feel like such a downer. Yeah, I am done with treatment and I still feel like dung. I am angry. It is not fair. I want to feel good. Quick, someone flip the I-am-done-with-treatment-switch to make it all better. If only there was a switch, a light switch. Turn on the light of "easy" please, am I asking too much?

I guess my expectations and reality are different. My attachment to feeling better is what is bringing me down. The reality, it is what it is. But my ego wants to fight. I want to fight every moment that I have had to lay on the couch, in my bed, in the hospital. I want to kick all that suffering in the groin. I want you (cancer) to pay for taking time way from me and my family. I want you to feel the pain I have felt. I want to punch your lights out cancer. I want you to get cancer, cancer, and feel like shit. I want you to have to worry day in and day out about taking care of your body. I want you to wait for weeks for a bad scan result. I want you to feel tired and grumpy for years.

It is all part of the process, my wise self pipes in. This has been a time of growth. A time where the beauty of humanity has been illuminated by all the suffering I have seen. The people in my life, my community have been a safety net for us. I have been blessed by compassionate and giving people in my life. My wise self knows that in some ways I am more alive now than I ever have been. Facing death I know my priorities. Right now, I am back in transition land, a place of uncertainty of what will happen next. It is to early too tell what the future holds. It is too early to really "do" anything. This place is where I have to hang out and be as I am. it's not easy.

To sum it up: fuck cancer and live in the moment. Well there is my bipolar rant for today. I feel better, still a little grumpy.

I can't wait

What a lovely day. The sun is shining. My belly is gurgling and bubbling like a witches brew. I still feel like a drunk stuffed pig, despite exercise to get my body moving. It's just part of the process. There is no way I can speed up my recovery from chemo. My body takes the toll each time. The amazing thing is in just 2 days I will feel better. The base layer of fighter cells in my GI system will be renewed ready to fight. Until then it is an icky road. The steroid rebound.

I am thinking about my recovery road and how I want it to look. I know this peaceful down time will soon end. It will be swept up with work, family and household duties. Then there is never enough time, or so it seems. Finding balance, back to my theme of "it is enough". I want to keep it simple. Live life full and simple. I like my words of wisdom, so easy to write while I am lying in bed.

Ugh. I am impatient. Want to feel better, stupid cancer, I am so over it.

It is enough

Continuing on the recovery train. Getting lots of sleep this time around, because I want to heal now. I am still puffy, bloated and feel like a drunk stuffed pig, because we all know how that feels. I have been resting and having help from my dad the past two days. It is so relaxing to know your home is being cleaned and organized while you are resting. Thank you Dad. I am lucky to have such a supportive family.

My mantra/words of wisdom today is: It is enough.

What is enough? Well, I see it like this, we all try so hard in so many ways to be heard or seen and do the right thing. I know I put a lot of pressure on myself to do the right thing as far as my health goes and I never meet my own standards. I am overwhelmed by the options. I am never sure which path to take. People spend their life looking for the "right" path to health or spiritual enlightenment. It is unrealistic that I will eat a "raw" diet. It is unrealistic that I will take 25 supplements a day. Some people do. The challenge is what if those measures are the best? How will I know? I won't?

Well it comes back to trusting my intuition and heart when it comes to my healing choices. I have to write about this topic again and again, I cant quite get over it or through it. So my message today is: it is enough. Whatever I am doing, not doing, it is enough. You have permission to have it be enough. No trying today. It is enough.

Ring my Bell

Ringing the bell of chemo completion. I am done. I am home now feeling nauseous, tired, bloated and slow. Chemo at work, body taking the hit. Popping pills to prevent the symptoms. It is temporary and this to shall pass.

I am going to go to sleep and restore. Virtual hugs to all. May your suffering be minimal on this joyous day.

I am still trying to think of a mantra.
Trust peace
I am on the peace train. You and me Youssef or Cat.
The dog days are over
Now I am getting back into songs. Maybe that is appropriate.
Here is my mantra/song list:
Can't touch this- mc hammer
I am on the peace train- cat stevens
All we need is love-beatles
Dog days are over- Florence and...
Let it be-beatles
Chasing cars-snow patrol
Breathe Me-sia
One- u2
Just the way you are- Bruno mars

I could go on but I need to sleep now.

I am just 6 hours away from discharge. One more infusion tomorrow and then i am done! I can feel the steroid flush my cheeks. Hot red cheeks, round head, I am a human apple.

I am preparing for my recovery. I think I will be so impatient this time around. I want to feel better tomorrow. Cause I have epic shit to do! Well calm your jets sister. I am ready for energy and action. I don't want to be a patient I want to be a nurse. hah, there you go I am a "patient", waiting and peaceful. I want to be going and peaceful. I think I need to come up with a mantra to get me through.

Any ideas?

Your Song - Elton John

Kaun Yin- godess of compassion

Motherhood initiation

A rite of passage takes an unexpected path
Falling down a rabbit hole, stuck in an evil wrath
Filled with beeps, poison elixirs and fear
Absent of play dates and talk of baby Gear

This will help, Here's your radical hysterectomy
All done, menopause and no more children for me
Breastfeeding ended on mother's day
Chemotherapy is now the needed way

daily trips to radiation
Who cares about a fucking diaper station
Surgery again, it just won't go away
I got a new $87,000 dollar vagina today

Scars decorate me from my crotch to chest 
Makes no difference when my baby lays on me to rest
Welcome colostomy to the cancer train
Filled with change, trauma and pain

Hello bald head honest and round
Playing trains with my boy on the ground
My spirit is strong and ready to win
This woman is dynamic and loves her kin

My body has been transformed by this disease
I am better, much more at ease
Despite my journey I am here and alive
My baby is a blessing and he is why I survive

What can you let yourself off the hook for?

Yesterday I was in a store shopping, my mom was outside watching my son. He was playing in the spray fountain. Three frogs and a turtle would randomly shoot water out of their open mouths. The anticipation was thrilling for my two and a half year old. He would giggle and jump waiting for the water to spray him. I was deep in the shop looking at dresses. I could hear his giggle and excitement in the back of the store. I couldn't help smiling. I couldn't help feeling proud hearing his authentic joy. That is my little guy enjoying this moment. He is present with the frogs and turtles. He is not worrying about how wet he will be when he gets in the car. He is not thinking about what he is going to eat for dinner. He is not thinking about anything else but about the water that is coming from the three frogs and a turtle. He is fully present. He is in the "flow".

We adults have to work hard, or shall I say "let go", to return to this child like state. Well most of us do. Being in "flow" is living in the moment. Its when time passes and you don't realize it. You are not listening to your inner critics. You are not filling your mind with shoulds. You are present with this moment. It doesn't have to be a joyful moment, it could be sad, exciting or dangerous. If we always lived in flow we would be a society of toddlers, not a good idea. Being in flow displays our authenticity. You are not trying to fit in. You are not trying to please someone. Pretension is gone. You are you in the moment. Judging is absent. You heart is receptive to others.

My toddler is my teacher. As an a adult I am happy when it is garbage day because the garbage is being taken away. For my little guy, garbage day is a day when this loud truck with blinking lights comes down our street. A man drives this giant eating machine that picks up big cans and dumps the contents into it's belly. He waves at the garbage man hoping that this powerful man who drives this incredible machine will wave back. His creativity has not been tainted by society. Looking at the world through the eyes of a toddler is inspiring. It is also exhausting.

I have been living in "the land of shoulds" lately, far from the flow. I want to live a full life, be present. I have been given a big warning. 2 years ago the fortune in my fortune cookie said, "life is precious. Here is a new life(your son) and here is a new journey(cancer), what will you do with these gifts?" answer: Be thankful, love, be vulnerable, be present, give back and last but not least be compassionate with self. Of course life is not all roses and lollipops, duh. The answer is what I try to attain. Some days I am so far from my answer. I put pressure on myself to live fully, that is kinda funny. Um, remember a few paragraphs ago? Let go live in flow.

Hey self, you are doing the best you can and that is fantastic. Summer vacation is almost here (last chemo in progress).I am ready for the four frogs and turtles to spray me. As my son would say, "oh yeeaaaahhhh".

Hurry up and wait!

Today was supposed to be the first day of my last treatment, yeah! Well there is no bed available for me at the hospital. So tomorrow I am on the top of the list. Instead I get to enjoy the day with my son and mom. I am so used to things not going smoothly, my fathers didn't get to ruffled today. Now if I don't get in tomorrow, I will be annoyed. Well more update to come soon.

Hair today, more tomorrow!

Strange but true my hair started growing back midtreatment.

He loves my head!

With or Without You- U2

Not enough time in the day. I need to go to sleep. The "shoulds" are on my back again, thinking about the foods I should be eating. The sleep I should be getting. The time I should be spending with little C. This transition from chemo to recovery is a challenge. There are nine thousand ways to enhance healing and health. I feel like I have tried at least eight thousand of them over the past two years. Sifting through the options is a full time job. How do you decide what is going to help? Answer: I have to feel it in my heart. Sometimes listening is the hardest part.

By the way I saw the movie "I Am", it's very good, great documentary about us humans.Here's the trailer.
http://trailers.apple.com/trailers/independent/iam/

5 regrets of the dying- Bronnie Ware

REGRETS OF THE DYING by Bronnie Ware, RN

For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.

People grow a lot when they are faced with their own mortality. I learnt never to underestimate someone's capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.

When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:


1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

 

2. I wish I didn't work so hard.

This came from every male patient that I nursed. They missed their children's youth and their partner's companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

 

3. I wish I'd had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

 

4. I wish I had stayed in touch with my friends.

Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

 

5. I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice.  They had stayed stuck in old patterns and habits. The so-called 'comfort' of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

 

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.

 

Where the Streets Have No Name- U2

I am back on my game for now. Now one week of normalcy until chemo #6, the grand finale. Then I am done. Then what... This is my third experience with cancer treatment. I define cancer treatment as chemo or radiation that is experienced over a specific time period. Surgeries count too but the act of surgery is quick in comparison to treatment and the recovery is the work. So being that this is my third treatment, I have noticed some cyclical patterns. At the end of treatment and for a while after I enter my "PTSD" phase. Ok, I am being honest here. I am not a basket case. I am still myself but the feelings are heavier, the anxiety runs higher and it is as if I am dealing with a new level of the cancer ordeal.

When your facing treatment or in it, you are doing something, there is a plan. I am taking action against cancer by receiving chemotherapy. I am doing what I have to to be strong and get through, surviving. When you are in active treatment, oncologists are interested you and your treatment. When I have been in-between treaments, the oncologists are gone (except every 3 month follow-ups). There is no recovering-from-chemo-transition-into-normalcy, what-is-this -long-lasting-side-effect question answering Doctor. It comes down to navigating my own recovery, managing my anxiety about reoccurrence and figuring out my new post cancer treatment body.

Yes, it is a little scary. My track record for being cancer free hasn't lasted long in the past(hence the anxiety). So why am I sharing all this? Because this is my reality. I want this blog to be a place where I process and share this experience with honesty. I am excited to be finished with chemotherapy but it is not over. The PTSD feelings overwhelm me during this phase. The reality hits me, all the loss and the body that I live in is different than the one I spent 37 years knowing. I have a permanent colostomy, I am covered with scars, I have a new 87,000 dollar vagina (ok, I think that is kind of funny), I am bald. All in the name of cancer.

Yes, I have so much to be thankful for. Yes, there are people worse off then me. I am not complaining. Just trying to tell it like it is. The support I receive is amazing. I have resources to get the support I need, when I need it. I am a lucky person with a lame disease. So if I seem particularly neurotic, controlling, moody or inpatient (yo family) it's because of the PTSD phase. It will pass.

The moral of today's blog is be easy on yourself. A reoccurring theme that I always have to remind myself. Have compassion for yourself. How you treat yourself effects everyone else, it really it does.

William Li: Can we eat to starve cancer? | Video on TED.com

William Li: Can we eat to starve cancer? | Video on TED.com


This talk is interesting, right up my alley or valley. It's in part about the action of one of the medications I receive, Avastin. This is a medication they want me to continue getting every month for who knows how long. I like the idea of adding foods and tea to potentiate the effects of preventing reoccurrence. It just seems like preventing cancer should be so simple. Hmmmm.

Joy and Pain - Rob Base and DJ EZ Rock

It seems like I never learn. As humans we must be programed to forget pain. That is why women continue to have babies right? They go through the hard work and pain and are rewarded and then they heal and forget. It was only 3 weeks ago, my last chemo, I went through this exact process, and I still get annoyed and resist the pain. I let the discomfort get to me. I know it will pass but I still want to fight it while I am in it. I mean it's not like I get the reward of birthing a baby when I am through a round of chemo(ok that would be weird, and a lot of babies). I am trying to go back to the "we forget pain" idea. I just think that when I am "in it", I can't remember the good energy I just wrote about a week ago. Maybe we are programmed to forget pleasure too. Maybe I can pat myself on the back and say I am being present, right? Well, if I we truly present then I would accept my state and be wise in knowing it will pass. Oh how the psyche torments us, quit judging and analyzing. There I go again.

All I know is I am cranky and my family has to deal with my swinging moods. I think part of it is coming off the steroids. They get me going and then bring me down. If your going to the top of the mountain you eventually have to come back down to the valley. The goal of all this torture is to prolong life, quality of life and be cancer free. Is it worth it, hell yes! Is it torture, hell yes! Thank you family for your patience and understanding. Someday this will be a distant memory.

So I continue in the valley for the next couple of days. Let's expand the landscape in my valley, make it a little more fun. I would like to include some bubbling brooks, flowing waterfalls with pink lotuses floating about. My valley is filled with never-ending blossoming cherry trees. A mossy ground lush and fragrant of licorice mint. birds flying about, lots of hummingbirds. There's a wise old woman in white that doesn't speak but is present and nurturing. The weather is sunny and 74 with perfect humidity. There is a fainting couch made out of lambs ear plant surrounded by vibrant dahlias, my resting spot. Now that is cancer free living!

Meanwhile, my body evolves through another regeneration of life after chemotherapy. You are a tough body my friend. May gentleness fill your cells!

Restless Resting

Restless resting, sounds like an oxymoron, that is how I feel today. I am tired from the extra 8 pounds of chemo and hydration that is flowing through my body. It is amazing that I gain 8 lbs in 3 days. Then I get to pee it all out, go kidneys. But in the meantime I get to feel swollen and puffy.

It is very challenging to be present. I want to plan and get on with my life and do something constructive with my day. I have to convince myself, again, that resting is my work for the day. Like my toddlers job is to play, mine is to rest. And again, this is my life right now, there's no such thing as "getting on with my life". I just miss my ole pal energy. My other job today is to be understanding about my impatience and frustration, you can have it.

It's times like these, right after chemo, I want to be inspired. I want to feel passion about life and the world. I want to make a difference make my mark. It must be a mortality thing. I really want to live a full life and being in bed feels a bit stifling.

While I am down and out my wonderful coworkers are planning a lunch fundraiser tomorrow to help us out. We are so blessed. Thank you my health department family.

Well back to restless resting.

Red, Brown or Scarf?

Ain't no mountain high enough - Diana Ross

Good morning. What a beautiful day. Rainier is glowing. I am on the fast track to getting out of here around 5 pm. I am counting my lucky stars for a smooth treatment. Maybe this is a result of good karma. Last week I called the oncology nurses and wished them a happy nurses week and thanked them for the work they do.

Who knows, lately I try not to analyze too many things.

Mount Rainer
floating over the evergreens
Covered in bright sun light energy
White snow with sky blue accents
From a distance, a giant snow slide, I want to ride, weeeeee
Beauty and danger.
A symbol of home
Powerful and commanding
Yes, your majesty
Shall we have some tea?

Healing Hippo & Hummuingbird

O magnificent Purple "water horse"
Stable and grounded on land
Flowing and agile while swimming in healing waters
Protector of young
One who knows a mother's fury
Symbiotic and amphibious
Please give balance and healing to those in need
O magnificent hippopotamus

- Many Women Can Have Cervical Cancer Test Every 3 Years: Study - Yahoo! News

Interesting article. In an ideal world, you would come to a joint decision with your HCP based on acog recommendations, test results, personal history. Personally having a history of yearly paps and no abnormal results, who knows what would have been if I waited 3 years to be tested. Food for thought. I am a rare case anyway.

> Many Women Can Have Cervical Cancer Test Every 3 Years: Study
>
> http://news.yahoo.com/s/hsn/20110520/hl_hsn/manywomencanhavecervicalcancertestevery3yearsstudy
>
> ============================================================
> Yahoo! News
> http://news.yahoo.com/

One thing leads to another - the Fixx

I made it to round 5. Today was another waiting game and a blessing in disguise. The hospital was full and my 11:00 admit time was moved until 4pm. I was stuck in traffic for an hour trying to get here. So I check in a 5:15. Usually the admission process takes hours and I was anticipating being here until Saturday morning instead of a Friday night discharge. Talk about a test of giving up control. When i arrived, my nurse said my chemo medication was ready and the infusion was changed from 20 hours to 18 hours. So I was hooked up and was getting infused within an hour. My room has a view of Mount Rainer and I was able to spend the most beautiful day outside with my son. What a mixed blessing getting bumped. It looks like I will be out of here by 5 pm tonight.

I only slept 3-4 hours last night. Silly meds and counter meds. Hopefully I will rest later.
So far so good. Just waiting for the fatigue to set in.

Hold On - Wilson Phillips

I do still exist. It is a good thing when I am blogging less. It means I have a vertical life. I am up and out in the world and not at home in bed. Last week, I went into work 4 days in a row, for a few hours each day. It felt like I was having a semi-normal life. At work there was, as always, a lot of unknowns and changes. More opportunity to be open to what may unfold and enjoy the ride. I am lucky to work where I do. So blessed.

It is so nice to feel good during my "good" week. I have energy again. I have to hold on to this feeling and remind myself that energy comes back.

I have been taking what I call risks. I have a lot of fear about going on a long walk and being out in public and getting stuck because of lack of energy or pain. God forbid i would have to ask for help. It keeps me from being very physically active. This week I was so thankful to have energy. I decided to push myself a little, take a risk.

On Saturday, I parked 6 blocks from the farmers market and walked with my little 35 pounder in my arms (he didn't want to walk) through town. It was just the two of us and I felt powerful and almost normal. Just a bald mom and her toddler going to the market. It gave me confidence that I can go on longer walks, to the playground and my body is capable.

My body has been so messed with that I have very little trust in what I can or can't do. Of course it changes week to week with chemo. So for me, Saturday was a BIG deal. Today I walked to the playground and went down the slide with Canyon. It was fine. I didn't break. I made it home.

I just can't believe that only 5 years ago I was training for a marathon and running 5ks and half marathons, feeling so strong and fit. I mourn the loss of running. But hey, who knows what I will be capable of 5 years from now.

The real message here is to remember this energetic time when I am in the arm pit of my bad week (this upcoming week). Remind myself that I get better.

Here's to my second to last chemo. A friend that gives really f'n tough love. Cheers.

Sent from my iPhone

Express Yourself - Madonna

In December I participated in the reverb#10 project. I would describe it as a personal writing reflection/goal setting exercise reviewing 2010. http://www.reverb10.com/

Now the website has monthly prompts to continue writing and personal reflection. The May prompt is: What is shifting in your life? Have any of the seeds you planted in reverb10 manifested? Sounds like a good time to address this prompt, so here it goes.

I looked back at my reverb10 responses. A lot of my reflection was about fighting cancer and wanting to move on with my life, not live scan to scan, and close the cancer chapter. Well of course, I still want that to manifest.

So far in 2011, I haven't had the luxury of living without cancer and it playing a big role in my life. I have done some emotional work since December. Cancer has been knocked out again according to my latest scan. My shifting is perception. I don't see myself fighting cancer anymore but I am more of a transformation artist. I see cancer as an energy draining force. It's like a pessimistic person that sees the bad side of everything. Like Debbie Downer from Saturday Night Live, everytime cancer shows up, I hear the post Debbie Downer comment sound effect, wah, wah.
http://www.youtube.com/watch?v=XW12eSDqFi8&feature=youtube_gdata_player

Cancer is a taker, a black hole and has a bad attitude. I see my white blood cells, chemo, food, body work, love, meditation as bright light energy that is turning cancer's frown upside down into bright healthy light energy. I am still evolving, I see that as a positive shift.

One of the reverb prompts in December was to choose a word for 2011. I chose "expression" as my word. I think that it has been appropriately assigned. I have been a steady blogger and open to sharing my process with anyone. I have not been willing to let this disease isolate or shame me, at least electronically. I speak my mind, feelings and insecurities.

I have been dressing more expressively which is a polite way to say that I have lost my sense of dressing normal, it's all about comfort and meaning. I really enjoy my one size fits all brown sweater/blanket like wrap, that has been deemed, my flying squirrel sweater (not a good sign) but I feel cozy and comforted wearing it. I am also enjoying my rainbow and rocket knee-high socks (must be some form of compensation for being bald. More attention to the body less to the head.) Yes, I wear them together. Whatever works, I try not to judge myself but go with it. It is all part of the healing puzzle(that is what I tell myself).

I guess the manifestation and shifting lesson for me is to be who I am and right now, cancer is a part of my story. It is not who I am, but we definatley have had a love hate relationship for the past 2 years. So for now, I am a transformation artist and the energy CEO of my body.(can I put that on my resume? It sounds impressive, one is creative the other so corporate.)I am manifesting health and transforming the wah, wah.

Manic Monday -The Bangles

Monday morning, I want to have a busy day full of accomplishments and efficiency. The western curse, needing to always be " doing" something. We ask each other, "what do you do?" Working is valued. Even while at home during this treatment, i think about what I can get done. Some organizing here maybe a creative project there. Well it all takes energy, physical, emotional and spiritual. The value of my energy stock is very high right now, it is in high demand with scarce amounts available to myself and the public.

Having lived in another culture, I recognize this "doing" culture is not all together healthy. Actually, you don't need to live in another culture to realize that. When I was in Benin, a common phrase people would say was, "good sitting". I found this to be quite funny. How can you be praised for sitting when your not doing anything. The western way is quite illuminated outside your own home. Over time I realize that the value was in being there, putting in the time, not forcing things to happen. Here in our culture we are busy bees or work ants, always have a mission underway. And again the goal is finding balance, being in the middle. Sometimes that answer is disappointing. I wish there was an easy path with listed steps of how to achieve balance (that is so American of me). Then when I reach my goal, I would get a gold star sticker and be content.

Today, I have a burning sore throat and am trusting that it is chemo related and not viral or passed on from Canyon's fever episode last week (which is now a mild cold/cough). I have to remind myself to check my energy stock today. Lab draw today.

Happy Monday and good sitting

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Heel Thyself

http://www.nytimes.com/2011/05/08/opinion/08Brown.html

More inspirational nurse writing by Theresa Brown. I am ready for the change. Thanks for your insight Theresa.

Cinco de Mayo 05-05-05

Here Comes Your Man- the Pixies

6 years ago I was getting into my wedding dress. I was preparing for my magical wedding day. It was one of the best days of my life. The sun was out and I looked beautiful. My friends and family at our side. What a celebration. My dear hubby I met 19 years ago today at a party in Bellingham.

Today I am pale, bald and bloated. Making laps around the living room to activate my bowels. So sexy, I know. I have no eyebrows and very few eyelashes. I am covered in scars. my body is so different. But I am still me.

My hubby sees through it all. He sees through my body's changes. He sees my soul and continues to tell me I am beautiful. I know he loves me for better or for worse. He sees my scars and his heart hurts for what I have endured but I know he loves me and sees beauty.

He is the devoted hubby I had hoped for when I married him. He makes me laugh. We know how to push each others buttons, and do. We have been to hell and back, many times now. We are solid. He is an amazing papa. Here's to you hubby and many happy times ahead.

I love you B. I am a lucky duck!

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Pace

Still coughing and tired. The sunny day is beautiful yet creates a restless feeling. "I want", says the ego. I want to be out in the world, in the sun. I am in bed lying next to my snoring toddler. He is exhausted. He has been entertained and on the go for over a week during my treatment and recovery. Today he reached meltdown. He just wanted to be held and rocked for over an hour. I think he wants mama time and to rest. I wish I had more energy an presence for him. He has a fever too, crap. We do not need any more bugs in this household. Please don't let me get it, whatever it is. Please let it pass by him too.

We try so hard to minimize the impact on our little guy that I think we forget to slow down let him process and rest too. It is much easier to fill time. It is hard to hang out in "transitions", you have to feel feelings you might not want to face. It is just uncomfortable sometimes to deal, such is life. I was reading Pema Chodron again...

Pema's wise insight: She encourages us to stay in that place of restlessness. That place of "boredom" where you feel shifty and want to "do" something, like reach for your iPhone, tv or some other entertainment, but you wait. What if you wait and be with the "shiftys"? You have to wake up to yourself a little bit, struggle a little bit and be present.

Well, cheers to feeling shifty(as I type away on my entertainment device.) and trying to stay present. Right now the whole idea sounds about as enjoyable as getting some major dental work.

Bonne sante, por favor!

Today

Listening to the wind chimes enjoying the sun peaking through the window. My energy is taking a dip as the steroids wear off from their three day party in my blood stream. I know the ritual now. I know what to expect and how this week will unfold. Tomorrow will be lots of resting and my digestion will gurgle and churn trying to get moving. I have to ride the wave. I must surrender to the deep rest my body desires to heal.

Today, I was looking in a catalog that came in the mail and I found myself admiring all the sleep wear. Hmmmm, this is where I am. I live in sleep wear most of the time. C'est la vie!

Feeling grateful for the help and love that surrounds me and my family.

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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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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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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.

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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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

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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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).

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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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!

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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