Week 9, Medical Update & drugs

Medical Update

Week 9,  recovery week after 5th chemo.

I feel tired.  Tired and in pain this past week.  I’ve started my new chemo drug Taxol. This will be the drug of choice for the remaining 3 treatments.  The symptoms are different, maybe somewhat better, maybe not.  I have pain throughout my body now.  It’s more than an ache and less than terrible.  It feels just like fibromyalgia pain did.  All over and intense at time. The nausea is less than with the A/C drugs, but still enough to need meds. The big bonus is not having to take steroid pills for 3-5 days after the treatment. They give it to me in the cocktail but it didn’t make me totally crazy this time. Semi-crazy.  Lots of tears.  Lot of fatigue.  Lots of pain.  Unfortunately, the first level of treatment for pain, beyond over the counter drugs that do not help, are steroids.  No! The mouth sores that kept me from eating or drinking regularly last week are healing after antibiotics.  They caused the worse pain I’ve had so far.  It hurt to talk, drink water and forget eating without numbing my entire mouth.  I’m on day 7 now and have not been able to work more than a couple of hours.  No energy, no stability (I fell down the stairs last night, but did not get hurt).  I’m having my suddenly-low blood pressure checked out tomorrow and have more IV fluids scheduled.  That may be another new piece of my treatment. Twice a week it’s back to the clinic for 2 hours of fluids just to stay hydrated so I can recovery in time for the next treatment.  Not the most fun I’ve had…   Not the worst time I’ve had – but close.

The photo below is of one week’s worth of medication and supplements.  I feel like I eat in order to take these pills every few hours.  The boxes do not include the 2 additional nausea medications I take every 6 and 8 hours, nor the various powders and potions from the naturopath that I mix into water.  I’m hoping to cut back the nausea medication with this new round of Taxol.  So far, it’s better than the A/C treatments!  Good news.

FYI- You may have your own opinion on taking so many pills and what you would do instead.   That’s great.  I’m not interested in ranting emails about miracle cures and diets, however. I’ll write a very funny post on the crazy, although well-intended, things strangers have sent me in the name of ‘curing my cancer.”  People who say, “If you’re serious about curing your cancer….”  as if I’m not already.  This photo is simply to show you what I’m actually doing.  It’s my choice to follow both my MD and ND recommendations in addition to a specific diet and exercise program.  I have faith they will work, but as with any cancer treatment, no one really knows.  There is no cure for breast cancer.  There is remission.  There is not seeing cancer cells too small to detect and calling it cured.  There is living the rest of your life in remission, living with breast cancer, and there is death from breast cancer.   One of these will be my path.  In the meantime, I do what I think is best and learn as I go.

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Week 9 – Poem 5 by Ken Arnold

Poem 5 by Ken Arnold

Update:  Ken is still recovering in a nursing home from MRSA virus.  Here’s his latest email and poem.  Thank you Ken.  We are all sending love your way.

—-

Kimberli,  For some reason I’m writing poems in this institution. Poem #5 is below. I find out tomorrow if I can leave here soon and resume chemo. It’s funny to want chemo, but it would be better than being cooped up here. I hope you’re ok after your emergency fluids.

This poem was occasioned by how wonderful your eyes were in some recent photos. I hope you like it.

Sending you much love,

Ken

—-

You have to love her eyes,

big gasping beauties

that can haunt you

 

over time, opened by

some ancient song of cele-

bration, as deep

 

as fairy tales,

easing out of the inner

dark the light. The light!

 

That’s what’s in her,

light. You can find her

in the dark, attenuated

 

as a long-gone memory,

gowned in white,

reverted to myth,

 

now pinned still

in the camera’s eye.

You’re almost afraid to look,

 

for she will see you

and see you and you will

fall into her story,

 

but your heart wants

to be her eyes,

to be seen, to see what she sees.

 

Because It’s Love is now available from Finishing Line Press:

https://finishinglinepress.com/product_info.php?cPath=4&products_id=1856

 

“When late-life love and illness pounce and collide, they create a zone of tenderness, urgency, and fearless truthfulness. The work in Ken Arnold’s Because It’s Love is almost unbearably courageous, intense, and moving.”–Rachel Hadas, poet and author of The Golden Road, Ache of Appetite, and numerous other books of poetry and prose

 

read a new poem every Monday at

www.kenarnoldwriter.com

 

 

Week 6: PRESS. Portland Family Magazine 2013 issue feature

Thank you, Janna Lopez, Portland Family Magazine, and Tay Juncker for designing and publishing this spread from the blog in your September 2013 issue!  See online link to feature as well as PDF of entire Sept 2013 magazine issue if you can’t find a hard copy around town. Janna is an amazing woman and one who I truly respect and admire for all she is, stands for and has done for the Portland community.  Also be sure to check out Janna’s photography & her first show on Facebook

 

Portland Family Magazine 2013 feature on Kimberli Ransom and Finding Beauty in Cancer project
Portland Family Magazine 2013 feature on Kimberli Ransom and Finding Beauty in Cancer project

 

 

Week 6 – Finding Beauty SHOOT: Kimberella. Photographer Heather Binns, AD Kristen Arnett

Week 6 – Finding Beauty Photo Shoot

“KimberellaLoses Her Hair, Not Her Glass Slipper”

8/23/13 Photographer:  Heather Binns, Art Director and 1st Makeup Artist Kristen Arnett, Gown Designer Sophie Chang. See more credit at the bottom of post.

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Blog post by NYC/Milan Art Director and makeup artist, Kristen Arnett

We all know the story of Cinderella, how her kind-hearted, beauty threatened her jealous family so much that they made her a servant and attempted to mask her radiance in ragged clothes. However, true beauty can never be hidden by conditions or circumstance, no matter how unfairly or awfully they have been put upon someone.

When Kimberli approached me about creatively collaborating to show a side of beauty in her cancer journey, I asked one question: “When you were little, what did you want to be when you grew up?”  She was very clear that it was Cinderella. In fact, she made people call her that for many years during her childhood. As I explored the story more deeply, I realized Kimberli and Cinderella weren’t that different.

Cinderella was given the opportunity by a fairy godmother to transform her ragged conditions to reflect the princess-like elegance she truly was in order to have just one evening of ecstatic bliss, dancing and falling in love, but with one condition…

At the stroke of midnight Cinderella had to flee as her carriage and beautiful clothes would all return to their prior conditions. As Kimberli describes chemotherapy, there is a time where she too slips into a “mind fog”, when her brain no longer functions as sharply, and her condition feels deteriorated. Just like the ringing of the clock tower, she too can tell exactly when she will “switch over” and plans much of her life now around that clock.

In this photo story we transform Kimberli into Cinderella, just on her way home from a night of blissful dancing, right before the “switch over”. Her pink ball gown subtly reminds us of the breast cancer ribbon. Her bald head strongly reminds us of cancer’s affect on the conditions of beauty. Kimberli’s inner light and her outer beauty simply cannot be hidden, no matter what the condition – just as it was for Cinderella.

As Kimberli is running home from her fantasy night, in her hand she holds a blond wig, which I like to think of as her version of Cinderella’s glass slipper. Though Prince Charming searched the land with one unique memento he carried with him – a shoe that just didn’t seem to fit anyone no matter how hard they tried to squeeze in– he simply couldn’t find the right match. It wasn’t really about finding someone to fit the shoe, it was a quest to find the woman who ignited the intense feeling of love in his heart.

Eventually he found her again – his true love, a woman worthy of being a queen regardless of her conditions. When love reunited with love, Cinderella was given her beautiful clothing back to wear forever.

Here’s my twist: I think Prince Charming is a metaphor for our higher Selves; he’s a catalyst to help us see our inherent beauty, even within of conditions that seem ugly.  Once we can see and accept our truly magnificent nature, we will be restored despite of the conditions that were placed up on us.

I believe that when Kimberli has completed her journey through cancer, the love she already embodies and radiates to those around her will restore her health, beauty and radiance in an even more profound way.

Notes from Kimberli

This day I worked with my dream team!  Talented, hilarious & ready to roll at 7:30AM.  I was belly laughing 5 minutes into the session.  I had had a very, very difficult 10 days after the last chemo treatment and focusing on how much fun this shoot would be kept me going. It was all worth it for those 3 hours. I adore these creatives. Check out their websites!

NYC/Milan Art Director and green make up artist (featured in ELLE Mag 2013): Kristen Arnett KristenArnett.com

Master of the outdoors session, 1st Photographer: Heather Binns http://www.heatherbinns.com

Portland Fashion week boss and cowboy: Tod Foulk semperfashion.net

Filmaker & 20 year friend: Dan Ackerman http://ackermanfilms.com

1st Assistant and gown shlepper, Photographer of the Bald Bride session: Colleen Sparks http://www.colleensparks.com/

2nd Make up artist Jessica Belknap http://jessicabelknap.com/

Gown Designer and Portland Fashion Week Goddess:  Sophie Chang http://www.sophiebridals.com/

All the way up in Alaska, Post production editor Vanessa Powell http://www.vanessapowellphotography.com/index2.php#/home/

Fabulous skin care products, Britta Aragon, CV Skinlabs www.cvskinlabs.com

Fabulous wig designer & stylist:  Brenda Kay http://www.bkhair.com/

Thank you Spartacus for the sexy Cinderella slipper contribution!

 

Want to join a future shoot?  Contact me directly at info@kimberliransom.net  

KIMBERLI RANSOM PHOTOGRAPHY www.kimberliransom.net info@kimberliransom.net 503-234-8111 17 SE 3rd Ave, Studio #306 Portland, OR 97214

Week 6 – Chemotherapy side effects. Tears, frustration & gratitude

Week 6

8/22/13

Chemo round 3, 2nd week of recovery

My chemotherapy and the side effects

I had no real idea what chemo would be like even though I’ve seen people go through it.  I’m assuming most others do not either, so I’ve decided to write about my experience thus far.  Perhaps it will allow those in my life a clearer picture of what it’s like for me.  Maybe someone will read this and it will help them navigate if they get cancer. There are MANY cocktails of chemo and no one responds exactly the same way to the any treatment.  It’s impossible to predict completely.  For me, the loss of control is one of the hardest parts of this process.

The questions I had, and some I still have, that others may share:

What will chemo feel like?  What are the side effects?  Can I still work?  Will I be throwing up all the time?  Will I really lose my hair and when?  What is “chemo-brain”?  Can I have sex?  Will I or (insert possibility of new boyfriend here) even want to?  Will I have ‘moon face’?  What’s happens to my skin and nails? Will my old fibromyalgia re-emerge? Will the chemo kill me?  Will I wish I were dead instead of having it? Will it hurt?  What else might happen? Will I need help?  How much? Who will be there with me and who will not?

My Chemotherapy Details:

Type of chemo:   ACT. “ACT” stands for A-Adriamycin, C-Cytoxan, T-Taxol. One of two main breast cancer regiments for Invasive Ductal Carcinoma.  Given intravenously via a port placed in my chest.

Frequency:  Chemo every 2 weeks.  Shot of Neulasta exactly 24 hours after chemo ends.

Location: Both my chemo and shot must be administered at the hospital.

Duration:  16 weeks total.  8 treatments.  My chemo started in mid-July and will conclude at the end of October 2013.  Each treatment (so far) takes up a full day and I’m at the hospital from about 9 or 10AM – 4PM.  The Neulasta shot appointment takes about 45 minutes.

Side effects (so far) Simply add “extreme” to each: fatigue, steroid rage (sleepless, jitters, tears, anger, out of control feeling) chemo brain (foggy, loss of memory, no ability to connect the dots quickly,) hair loss, nausea, night sweats, mouth sores, dry eyes, dry skin with rash, bone aches, blurred vision, weight loss, headaches, constipation, weak voice.  8/24/13 – I’m at week 6 of 16 and during the AC portion of the ACT treatment.  Who knows what T will bring.  I’ll update this post as I go.

My Experience with chemo so far:

Yes, really, much of it sucks.  No way around it.  There are beautiful moments when I appreciate my life, friends and family like never before, but overall “it blows,” as one of my new COO business clients, put it.  He’s right, and I love that he used that phrase as it made me laugh.  Yet, it’s not as bad as I expected it might be.  Life doesn’t stop during chemo.  It’s not like hitting a pause button where you just pick it up again after it’s over.  No, I’m right in the middle of it and life continues – I’m still part of it, but the side effects make me different.  I try to remember, the side effects make me sick, I am not sick.  Although my mind doesn’t completely quit working, it just doesn’t click as quickly or connect the dots as fast, if at all, during the bad days.  I’m not actually throwing up, I just feel waves of nausea throughout the day.  I’m dizzy and off balance.  I can get up and out of bed every day, but the problem is I neither have energy to do anything nor can I be still.  There are steroid and chemo chemicals rushing through my bloodstream and coating my mind in ways that make me feel both hyper and exhausted yet unable to do anything about either.  Where I thought I would have more “choice” over how I felt or dealt with these moments, I find I’m unable to think clearly enough to choose most of the time.  I just “am” during those times and it’s incredibly frustrating.  “Who stole my sharp mind and when will I get it back”? I ask myself.

Hair loss:

Funny, I wrote this entire post before I realized I had forgotten to mention hair loss.  The thing I was most afraid of has now become a small detail I could miss. It started falling out immediate after my 2nd chemo treatment (week 3).  I cut it short (see http://friendsofkimberli.com/week-2-finding-beauty-4-haircut-extravaganza/ during week 2, as everyone told me this would be less traumatic and messy. They were right, and that photo shoot was fun for me.  Find a great hairdresser like Tamara at Oranj Studio to do it!  Right after my 2nd treatment it started falling out on my pillow, in my hands, in the shower.  It came out evenly at first, not in patches, so I was able to wear short but thinning cut for another week. Finally, at the beginning of the week it was falling out everywhere becoming messy and stressful.  It was time.  I called Tamara, she came in on her day off, and together with my little brother, Dean, we had another little party and shaved it. Not all at once, but in stages.  We even tried a mohawk!  In the end, I was bald as a billiard ball and laughing.  I looked good.  Tamara was fun. It was going to be okay. Dean and I called sister Katy and we met for dinner outside at Ken’s Artisan Pizza.  We sat outside on a hot summer night and I tried out being bald for the first time.  No one stared.  No one laughed.  I don’t know what I expected, but it was all relatively normal as I felt okay with it. I was tired from the chemo, but needed to be in public to begin to ‘feel’ what being bald was going to mean, to mean whether or not I would cover it up immediately.  I decided to just be with it for a couple weeks until I was comfortable.  It’s summer, hot and wigs make it hotter.  After 3 weeks of doing this I still prefer bald or just a little hat.  I pretend I’m a super model on assignment.  That is not to say that I don’t miss my long red hair – I do.  However, I’ve just decided to embrace my temporary state of being bald and try to have fun with it.  I look in the mirror and still see me.  My face, my body, my head. It’s been far less traumatic than I thought.  I like the way the wind and the shower feels. I love it when someone asks to touch my head.  It feels wonderful.  By the way, other hair falls out, too.  For whatever reason, I don’t ask as maybe the chemo just forgot and I don’t want to remind it, I still have my eyelashes and eye brows. Thank you!!! No more shaving my legs or arm pits, though.  That’s a nice bonus.  Oh, and one I didn’t think about before, which was a little shocking, pubic hair.  Gone, too.

Steroids & sudden temporary menopause:

I cried tears from my ears after bawling on the acupuncture table and then sitting up.  I cry over anything right now.  Seriously, the Lindsay Lohan interview with Oprah made me bawl.  Ask me about how I’m doing on one of these days, I’ll cry.  Ask me how my cat is doing on one of these days, I’ll cry.  I may also suddenly snap at you.  Please don’t take it personally, I can’t help it even though I try.  According to my cousin, Linda, who has shared this cancer experience and is a huge help in guiding me, this is called “roid rage.”  I looked it up on the interwebs and it’s true, as are all things found there.  I feel out of control at some moments.  Mostly it’s unexpected tears, but sometimes it’s utter frustration with myself and anyone who happens to be around me.  Apologies in advance.  The steroids are really the worst part of chemo so far for me.  I hate not having more say over my emotions or at least having them be logical and connected to something that’s real.  Yes, I can cry over having cancer and the changes it’s brought to my life.  However, even when I don’t feel sad about it my body is reacting with a flood of tears I can’t stop.  Damn it, I just cried writing this!  The treatment is also forcing my body in to a sudden temporary menopause. Oh, what a lovely little glimpse of the future that is.

I want my world to still be extraordinary, creative, full of passion and love.  However, the parameters and measures of what these things mean can not be the same as they were before chemo or I feel like I’m failing.  In order to feel content and happy I have to restructure what living fully means to me now.  I also have to allow those measures to change daily as I recover and can do more.  The 5 days after chemo have very different benchmarks than days 8 or 9 and still different from days 13 and 14.  Even that tentative schedule will change with the next new chemo drug starts for the last 2 months.

October 3, 2013 Week 12 update  I’m now more than half way through chemo and have had two treatments with the T part of the treatment Taxol.  My side effects have changed.  While I still have the chemo brain and fatigue I do not have as much nausea.  I require only one of the the three nausea medications I did during the AC part. I’m no longer losing weight.  Note: contrary to popular belief most people actually gain weight during ACT as the metabolism slows down like in menopause. I no longer have blurred vision and mouth sores.  The mouth sores became so bad bad at the end of the 4th AC treatment I needed antibiotics. I have three new side effects with this drug.  Pain, hot flashes, neuropathy (numbness in hands and feet). The pain is centered in my long bones, arms and legs, for the first several days then lingers in my hands, hips and knees toward the end of the two week cycles.  I have pain medication that takes the edge off, but does not take it away. Sleeping is a problem due to the pain the first 5-7 nights.  Hot flashes started on the 2nd Taxol treatment and where every half hour for the first day.  A sneak peak at menopause!  I was happy being blissfully ignorant thank you.  The neuropathy just started last night (week 12, 9 days into my 2nd Taxol treatment) when suddenly my toes began to tingle.  I’m worried about my fingers as they happen to push a shutter button and play guitar strings and piano keys.  For some people it’s temporary and others permanent.

 

What happens:

The Day Of Chemo:  It’s not so bad.  I was frightened to be in the room when the oncologist first walked me through it before I started.  However, this day is not the most difficult one, by far.  The room at Providence Portland Hospital has nice comfortable chairs for the patients and additional seating for your family member or friend to come with you.  It’s bright and open. There are anywhere from 15-30 people there each time.  The people there are all ages, races, types and stages of cancer and chemo.  It affects anyone as is evidenced by the variety sitting with me every other week.  I check in around 9 or 10 AM each time.  A nurse weighs me, checks my vitals, asks about side effects and sees what they might do to help with them.  I love my nurses.  Every once in a while, I don’t know the schedule, I meet with my oncologist, who reviews my progress.  Then I walk back to the chemo room where (I hate this part) the nurse punctures the skin over the port in my chest and inserts the IV.  Yes, it hurts.  I’m sensitive to pain with my lingering fibromylgia, so it hurts a lot.  Yes, I cry, but not so much over the pain as the knowledge of what’s happening.  Once the first tear wells I can’t stop the others.  After the blood is drawn then I have 45 minutes during which I escape and go outside.  My mom or my mom and friend/honorary sister, Janis, have been with me at each of the previous treatments.  When the blood work comes in they check my red and white blood cell counts as well as all the various acronyms, then decide if I can have chemo that day.  So far so good!  Then my nurse for the day hooks up my first IV and begins the first bags of anti-nausea medication. I’ve usually been there about 2 hours by this time. Buzzers beep around the room as other people finish their bags of concoctions and I wait for mine to beep in turn.  In the meantime I can be on my computer, talk, read, watch a movie.  Not bad!  My buzzer beeps and a new bag of steroids is hung and begins to drip.  I start to feel kind of strange at this point, although it is not immediate.  Just strange.  More buzzers and the lovely nurse comes to start the first bag of chemotherapy.  I begin to feel a little sick at some point during this bag but the nausea medication keeps it in check.  The last part is administered by hand via two large syringes full of red chemo drug.  I think this is the Cytonxan, but I don’t actually care to ask.  This one is given by hand and very slowly as I get a massive headache when it goes in too fast.  I just get a bad headache when it goes in slowly.  Then that’s it, around 6 hours from the time I started I’m finished.  I don’t really feel bad, I feel wired and slightly sick.  The steroids are still overriding the other drugs and I’m not tired at all, but I’m don’t feel normal.  I’m starting to experience the jittery anxiety as well as the beginnings of the chemo brain fog that will descend upon me over the next two days.  The night of the chemo treatment is very difficult.  Even with prescription sleep aids, I’ve been up most of the night.  Since my brain is still pretty clear I’ve just gotten up and either written for the blog or tried to watch movies.

The day after chemo treatment has also been relatively good.  I’m still buzzed on the steroids, shaky but mostly able to function.  On this day, exactly 24 hours after the chemo treatment ended, I go back to the hospital for a shot of Neulasta, either by stomach or arm, to build up my white blood count and immune system.  My red blood count continues to drop regardless, from what I understand.  I am currently at the low end of the normal range on both.  I have acupuncture appointments 2-3 times per week.  I don’t know if they help or not.  How do I know?  I feel bad then I feel bad some more later.  Same with shiatsu.  The Neulasta brings on pain and achiness in the major bones.  My thighs and hips begin to hurt, or sometimes it’s my humerus (upper arm) bone and shoulders.  Sometimes the pain just roams in those areas.  I alternate between Advil and Tylenol every few hours.  This is in addition to the daily steroids and 3 nausea mediation that need to be taken around the clock at specific times.  Add sleep meds and supplements, and you have a boat load of pills and 80 oz of water each day.  That night and day 3 I begin the major skid into begin feeling both exhausted and wired.  In addition to the nausea, the night sweats begin so badly I have wake up every few hours to change my clothes and sides of the bed.  Throw in complete brain fog, dizziness, blurred vision, mouth sores, dry eyes, dry skin with rash, headaches, constipation and a froggy little voice that makes all my callers ask, “Did I wake you up?”  “No, I’m just being froggy.”  There is no such thing as work for me during these first days.  The last round the symptoms were the worst for 7 days than slowly lifted on days 8 and 9.  Add sudden tears or anger from the steroids to that mix and try working.  I’ve felt everything from relief and happiness to be in my studio to total overwhelm and frustration when I tried to work on days 7,8 and 9 this week.  Next week I haven’t booked anything before day 10, which gives me 4 days of work every 2 weeks, at least for the next round before I begin the new chemo drug regiment.  Everyone responds differently, this is just what I can handle right now.

Days 10, 11, 13 and 14 my mind becomes much more clear again and my energy begins to return.  It’s amazing, I feel somewhat normal.  I still tire after an hour of anything but I’m grateful to have my mind back.  This is also about the same time the steroids are clearing my system I think.  I cry much less and feel less frustration.  I can meet with friends, work some, play some and appreciate my life despite the nausea and fatigue that remains.

Gratitude and choosing the loss:

Overall, it’s not really that bad, but the recovery period seems to be getting longer each time, and I have no idea how I’ll respond to the next drug, which begins in two and a half weeks. So I have to let go and see what happens.  I hope it’s better, but I will take whatever comes.  I’ll take all of these side effects, as anyone going through chemo does.  I’ll let go of my hair and my breast in trade for my life.  Yes, I’ll take my life, please, and say thank you very much to chemo and my side effects.

chemotreatment3web

 

chemotreatment2web

Week 6 – Pre-Chemo Port Placement surgery (and changing surgeons)

Week 6

August 24, 2014

Looking back on July 15, 2013­

Pre-Chemo Port Placement surgery (and changing surgeons)

This was an outpatient surgery to place a catheter port through which the chemo and cocktail of drugs could be given.  I did it the day before my chemo started.  The port is the alternative to having a huge new IV stuck into my arm every other week.  Painful and dangerous if they make a mistake and the chemo goes in the wrong place, I hear.  I elected to fully enjoy my last week prior to chemo and, instead of having the surgery a week prior to chemo, I did it the day prior.  I do not recommend this unless, like me, you could not possibly waste a good day of your life that week before.  In my case, my oldest step son was in town from NYC, I had a hot new ‘boyfriend,’ I wanted to have the “Hair & Boobs Party” and I had to work as much as possible to make money that week while I still could.  Self-employment has no sick time pay.  Doing it the day prior to starting chemo made the first treatment much more painful and difficult, but I’m glad I did it that way, regardless.  I wanted that extra day of feeling good more than I wanted an easier first week of chemo.

The surgery itself was, well, I don’t remember.  There was a very funny anesthesiologist who I’m sure was sharing hits of his own medicine.  He assured me that although I have ‘redhead pain issues,’ which means it take 4 times as much local to make me numb at the dentist, and Fibromylgia (mostly controlled now), he would knock me out and be by my side if I felt anything or my blood pressure went crazy like it does when I exercise.  My mother and a friend, Amy Bradshaw, sat by while the surgery took place and afterward as I recovered in the room.  We discovered that my codeine allergy also applies to Oxycodone (hmm, you think they the docs might have warned me about this since it’s the same derivative) and after itching like crazy for two hours I was prescribed Valium instead.  WTF?  How did housewives all over America function on this in the 50s? And they drank martinis and had those cute hairstyles?  That’s talent!  I’m not sure it took away the actual pain, but it did make me high as a kite in a very strange way.  My 5’2” mother was like a linebacker blocking the stairwell each time I had to wobble down the hall.  She was sure I would tumble down, taking her with me.  Brave women.  That stuff makes me loopy! I took it that next morning when I started my first chemo treatment and wore a big pink ribbon in my hair all day.  I was still in pain but didn’t care.

The actual ­­lead up to the surgery was incredibly stressful.  First, my actual surgeon was not available, and I needed to either use one of her partners, do my surgery a very early, or delay my chemo start date.  This was a minor surgery, so I elected to use her partner.   That new surgeon said she would not do the surgery until speaking to my cardiologist about an odd exercise-induced high blood pressure issue I have. That sounded reasonable.  She and the cardiologist actually spoke the following day after that Tuesday pre-op appointment regarding the Monday surgery and agreed to proceed.  However, her nurse would not return my call to confirm the surgery.  This meant I did not know if I was having surgery (or, to my understanding, able to start chemo) the following Monday until 4:45 Friday night.  It took 5 messages over the week and finally finding a nurse navigator at the hospital to physically walk into the surgeons’ office, find the nurse in question, ask her and then the navigator called me back.  I have now changed surgeons even though she was the most recommended and I liked her personally.  I can’t imagine going through something like that again prior to a major surgery like the double mastectomy that is to come in November.  Way too stressful on top of a situation that is already stressful.

I’m learning quickly to remove as much additional stress from my life as possible.  This includes situation, some people and even some of my doctors.  You spend far more time talking with a physician’s staff than you do with them.  The staff, and whether or not they have time for you, is extremely important.  I’m not upset with the nurse herself.  I really liked her personally.  I feel that she must be overworked and stressed too, otherwise she would have called me.  I feel badly for her being in that position.  However, my body, my cancer, my life cannot wait on someone else’s busy.  This is my ship and I’m the skipper as much as I can be.  I needed a new crew with a surgeon and nurses who have their own structures in place so they have time to return my calls, sail me straight and help me through the upcoming gale winds.

 

Week 6- Poem 3 by Ken Arnold

Poem 3 by Ken Arnold

Note:  since this poem was written Ken found out that his own cancer has spread and he has begun chemotherapy, for the first time, as well.  He is in his first round as of today, August 24, 2013.  Please send your thoughts his way.  I think we will see much more poetry on chemo once he’s has experience it personally.  What a treasure to have a poet interpret it for  us.  This poem is exactly what I feel.

 

The poison goes in

here. It’s called a port.

It docks here like a ship

 

unloading the exotic,

but it’s toxic,

not what you’d want on your

 

walls, like art or damask.

The poison goes round

and round and you are

 

the merry-go-round,

the camel or the ostrich,

and it rides you,

 

oh, yes, like little children

who know not what they do.

Giddy-up,

 

body. What rides you

is indifferent to you.

It only cares

 

about itself. But the ride

is worth the ticket:

think of what you’ve learned,

 

that you are not your

body, not your hair,

nor even your perfect boobs.

 

Like a cat stalking

a sparrow, the poison

pounces. You fly away.