Tuesday, October 21, 2014

A week-long celebration

My friends.  Oh my, my friends.  How I treasure you.

Bike World, the corporate sponsor of 100 miles to nowhere set up a tent in my yard.  Photo by Kathryn Corones  
 On Saturday, two of my friends rode their bikes 104 miles around and around my block.  They intended to ride 100 miles, but rewarded pledges of $200 or more with an extra mile.  My mom was one of those extra-mile donors, but her donation was electronically received right after the bikes were shed following the 103rd mile.  Woops!  My friends got back on their bikes and dutifully rode one more mile.  And look at those smiles!
The queens of going nowhere (among other achievements):  "Norman" (left) and "Panda"
My dad joined them for a casual 84 miles.  
Nothing casual about this guy.  He proceeded to run a half-marathon on Sunday.  Love you, Irondad!
Several other friends, neighbors, and family also rode for various miles.  Ian and the girls probably logged nearly 10 miles, and I pedaled for a mile or two myself.
photo by Kathryn Corones

It was the most beautiful day.  Panda has some more details about it on her blog.  One of the things she said is true for me, too, and that is, "I feel like I didn't have the mental ability or energy to truly thank everyone that came to support."  I felt that way, too, and I wasn't even biking!  I tend to feel overwhelmed as the frequent recipient of the outpouring of generosity and support.  During 100 miles to nowhere, much like during the Huzzah party in June, I found myself trying to enjoy it a bit anonymously, as if I were attending a festival or event that was for someone else or everyone.  The good thing about the anonymous feeling is that being overwhelmed did not spoil my ability to have fun.  The bad thing is that I did not properly exhibit the humility or gratitude that continues to fill my heart.  I had a wonderful day at 100 miles to nowhere, and I won't soon forget it.  Thank you, friends, for doing this for me and my family.  Also, thank you, Carnation Nation, for being such a large and powerful place.  Thank you for being a part of my life.

Saturday was the beginning of this awesome week that is my celebration of life.  My life, which I happily continue to inhabit.  It has once again been proclaimed by the governor that this week is Inflammatory Breast Cancer (IBC) Awareness week.  I'd like to remind everyone that the signs of IBC are different than other types of breast cancer that commonly present as a lump.  IBC often has NO LUMP.  IBC can turn up as itchiness, redness, or firmness that feels like inflammation, or all of these things.  For more information please see www.eraseibc.org.  When in doubt, rule it out!  (If you'd like to buy our T-shirt that says just that, please email me at 30carnations(at)gmail(dot)com.)

Finally, this week will end with my birthday!  I will be 34 on Friday.  I can't wait.  I have always loved my birthday, but I will be particularly happy to celebrate it this year.  I had several low moments this year when, with a certain amount of bitterness, it crossed my mind that I might not make it to my 34th birthday.  Yet here I am!  With lungs full of oxygen and no more breasts to poison me!  Who knew that 34 would feel so good?  

I hope you all are having an excellent week.  Please help me spread awareness of IBC!

Wednesday, October 15, 2014

Raking

"Let's go jump in a leaf pile!" said my daughters after another pleasant family dinner.  It was so temperate outside this evening that we didn't even need our jackets.  Everyone put on their shoes and tromped around the house to the backyard.  The majesty of the mature maple appeared as we rounded the corner of the house.  The maple tree is about the same size as our modest two-story home, with its oversized red-orange leaves glowing above our patio and yard.  Half of the leaves presented their beauty yet on the tree while the other half were scattered about the yard.  Ian and I used the large red rake to scoop the leaves into an orderly pile, building it ever taller at the request of the children.  They took turns alternately scattering the pile and burying each other in it.

I found myself standing with the rake in hand, waiting to be summoned to repair the pile.  I looked up, admiring the leaves yet attached to the tree as they twisted in the crisp fall breeze.  How did we get so lucky to buy a house with such a perfect tree?  "Full and colorful maple tree" was not on our must-have list when we were shopping for houses, and yet I can't imagine living without it.  So many happy times are associated with that tree:  grilling on the patio under its shade, pushing babies in the swing that hung from a low branch, frolicing in a leaf pile unrivaled by any in my childhood.  I wondered what future happy times are in store for me under the tree.

My gaze drifted up above the tree to the darkening sky.  The darkness descended much earlier than I expected, reminding me of how quickly the autumn is passing.  Where is autumn going?  Where did spring and summer go, for that matter?  Oh yea, I was sick.  I thought about how 4 months ago I had a PICC line and neutropenia.  Now I have a port and health.  With my health I have walked the girls to school, visited grandparents, attended the circus, cooked all sorts of foods, eaten all sorts of foods, and worked on my science.  And raked leaf piles.

"Mom, we're ready for you to fix the leaf pile!"  I turned my attention back to the girls, the rake, the leaves, the earth.  As I dragged leaves with the rake I felt the power of my legs, torso, and arms.  Both arms.  Whole body.  I was complete.          

Sunday, October 5, 2014

Well, that didn't take long

This weekend proved that my re-entry to Life is speeding right along.  Can you believe that I walked the 5K at Race for the Cure on Saturday morning?  Three weeks and three days post-mastectomy #2.  Boom.

That's me in the middle of the back row, surrounded by a bunch of awesome family members.  For additional awesomeness, check out my dad's wig (front row, left side).  
After the race, I came home and cleaned my toilets for the first time.  You might think that this is mundane, gross, and unworthy of highlighting, but I beg to differ.  I have not had the energy to spend on toilet cleaning in seven months.  Seven months!  This weekend I had the energy, and the confidence that my energy would be sustained following the toilet cleaning.  It was therefore with a certain amount of gratitude, if not outright joy, that I cleaned my toilets between the hours of 2:00 and 3:00 on Saturday, October 4th, 2014.  Afterwards I bypassed my former rest on the couch and went for a victory lap by tidying up the kitchen.  Chores have never felt so good.

Having energy to perform a task is only half of the solution.  The other half of the solution is a side-effect of having energy, and that is the reclamation of my time.  During cancer treatment I spent gobs of time sleeping and resting.  By the time I had attended to my bodily chores (appointments, eating, bathing) I had scarcely any energy-charged time for the family, let alone activities of my choosing.  The gift of time is almost as sweet as the energy itself. 

This weekend I possessed energy-charged time for the family.  Race for the Cure was invigorating, toilet cleaning was satisfying, and throwing my daughter's 7th birthday sleepover was...surely there's a word for the warm loving glow that has surrounded my heart all day?  It was wonderful.  She had her three best friends over for a sleepover.  We made pizza from scratch, frolicked in the leaves outside, built a fort in the girls' bedroom, and gobbled Ian's famous stovetop buttered popcorn with Mary Poppins.  Ian and I didn't even stress with additional organized activities, we mostly just let them play.  They all fell asleep between 9 and 10 pm, and they all woke up just after 7 am.  They drew pictures quietly for half an hour before I got up to make pancakes (also from scratch--I do love homemade foods!).  Just over half of them let me braid their hair while we watched The Magic School Bus.  Then we turned off the TV and played Twister until parents started to arrive.  A glorious time was had by all.   

This is the life.     

Tuesday, September 23, 2014

Forward

I'm done.  I'm done with the painful, sickening treatments for the second time.  I've fought breast cancer twice, and for the time being I've won.  Again.

I think it will be a few more days before the full magnitude of these statements sink in.  I'm done!!!

The appointment today was perfect.  Dr. Surgical Oncologist snipped my stitches and pulled out my J-P drains.  Whew!  It wasn't quite as ticklish as last time.  I think it was due to the fact that the drains were shorter--she said that she trims the length of the drain tubes based on how many lymph nodes she removes.  Since I only lost two lymph nodes, the drains were relatively short, perhaps about 6-8 inches each.  I had gotten so accustomed to having the drains in that all day I've been having to re-learn how to live without them.  No, I don't have to clutch my elbow to my side and lift slightly to relieve the pressure on the stitches.  No, I don't have to make sure I'm not slamming them in the car door.  No, I don't have to avoid laying on them while I'm sleeping.  Oh!  Sleep!  It will be so sweet tonight!

She also gave me the results of the Tumor Board's discussion.  Based on the favorable pathology results, the consensus is that I do not need radiation for either my lymph nodes or my lungs.  Huzzah!  They do still recommend that I remain on Herceptin + Pertuzumab "indefinitely".  That's fine with me.  I'm so lucky that there is something to help control my disease.

I still have so much recovery ahead of me, but I'm thrilled to know that it won't be undone for awhile.  For the first time in months my recovery will be exclusively forward.  No backward steps due to do further treatments.  Just forward.    

Monday, September 22, 2014

24 hours

Twenty twenty twenty four hours to go
I'm gonna be elated
Nothin to do
Nowhere to go
I'm gonna be elated
Just put me in my dad's car
Take me to the main
Hurry hurry hurry
Before I go insane
I can't control my itches
I can't control my drains
Oh oh oh oh oh oh

Friday, September 19, 2014

Almost perfect news, and 100 miles to nowhere

Dr. Surgical Oncologist's office called with what she described as "good news" and "almost perfect news" regarding the pathology of my breast cancer.  The good news is that six months of chemotherapy worked as it should; a little bit of ductal carcinoma in situ (DCIS) remained in the breast tissue, but it was no longer invasive.  This means that it wasn't trying to grow out from its location.  The other way that I took this as good news is that the remaining DCIS seems to support my decision to get a mastectomy.  No doctor has said that, but my gut is taking this at further evidence of its trustworthiness.

The almost perfect news is that the pathology confirmed that there was no cancer in my lymph nodes.  The reason this is not fully perfect is that they did find a few cancer cells in the duct on the way to the lymph nodes.  I have no idea what this means.  Was my cancer spitting off cancer cells until the moment it was cut out of me?  Or had these cells split off from the cancer long ago and decided to hang out in this bodily hallway?  But it doesn't matter because the lymph nodes were clear, which is the most important result.

I'll see Dr. Surgical Oncologist on Tuesday when I get my drains removed, and I'll get clarification on the significance of all of the pathology then.  Also, the surgical team is/was to present my case to the Tumor Board (again) today, so it will be interesting to hear what everyone at the institution thinks about my case.  I have my fingers crossed for no plot twists, such as radiation.  I'm ready to close the case, at least for now.

My recovery is continuing in a positive direction.  The only major development is that I have a hot, itchy rash that covers my chest wall surrounding the surgical sites.  I'm not terribly surprised to have a rash, since rashes have been one of the main sidebars of my chemotherapy this time around.  But I am terribly uncomfortable.  I have been taking all sorts of allergy medicines to try to control the rash:  benadryl, zyrtec, zantac, allegra.  The only thing that has been moderately effective is an anti-inflammatory ointment, but it is not a cure.  It prevents the rash from bubbling and oozing (yay!), but it allows it to maintain a hot and itchy state (boo!).  My second tool for getting relief is ice.  I ice the chest wall all day long.

Additional relief came this week in the form of some amazing news.  Two of my dear friends are organizing and riding 100 miles to nowhere, on their bicycles, around my block.  They are doing this on Oct. 18th to raise awareness of inflammatory breast cancer and to raise funds for my daughters.  To read more about their event and to find out how to participate or donate, please check out "Steven's" blog here, or "Norman's" blog here.

The kindnesses, generosity, and support continue to amaze me and fill me with gratitude.  Can't wait to hug you, Steven and Norman.          

Tuesday, September 16, 2014

Tick tock

As I lay on the operating table with the nurses and technicians bustling around me, I couldn't help but marvel at all of the resources being spent on helping me live.  I thanked them all for their efforts.  Then a nurse put the gas mask over my mouth and told me to breath deeply.  I instinctively started in on my mantra, "I have strength, I am strength.  I have peace, I am peace.  I have strength, I am...".

Now that I am six days post-op, and I find myself impatient to get on with living.  After months of chemotherapy and now a major surgery, most of the gears of my life have necessarily ground to a halt.  I am so excited to wind them up again.  I feel like a shiny pinball has rolled into position, and I'm amassing the energy to pull the spring and play the game.

Amassing the energy takes so much effort, though.  My thoughts remain cloudy, perhaps yet from anesthesia, painkillers, chemotherapy, or all of the above.  I am not in half as much pain as I was after my first mastectomy, but the wound is nonetheless stressful and exhausting.  I cannot yet look at my new wound without getting nauseated (although everyone who has looked tells me "it looks good"--it is still a bit too purple and gruesome for my tastes).  Taking a shower is my most dreaded activity, because of the effort to both hold the drainage tubes and to not look at my wound.

Ah yes, the drainage tubes.  Did you know that their official name are J-P drainage tubes, or Jackson-Pratt drains?  You must be one egotistical person to name these disgusting things after yourself.  They collect fluid that ranges in color from red to golden yellow, and occasionally clumpy stringy bits of me collect with the fluid.  They utter terrible, juicy sounds when being emptied.  They are a pair of plastic testicles pinned to the inside of my shirt, flapping against my stomach when I walk and occasionally peeking out from under their hiding place.  They are so, so gross.  I get them removed one week from today.  I'm almost halfway done with them, not that I'm counting down or anything.          
My mom has been a wonderful asset this week.  She is a nurse who is on a short leave-of-absence to be here with me.  She is a lifesaver, doing all of the things I either can't do (such as walk the girls to school) or don't care to do (such as empty my Jackson-Pratts).  I appreciate you, mom.

In addition to getting on with my own living, I am anxious to start paying back all of the kindnesses that have been shown to me throughout this cancer ordeal.  I fear that my debts to the universe are getting quite large.  Hopefully I will have ample time to pay them back.

ps  I finally fixed the YouTube glitch and got the movie of my last chemo to upload.  It's now linked properly in my Last Hard Chemo post.