National Radon Action Month

January is National Radon Action Month.  Good thing I found that out from a good friend or I would have gone through the whole month unaware.  Yes, I know, I am terrible at staying informed or connected via social networks.  I check them periodically at best.  Email though – I’m great at checking in the morning.  Rereading that last statement makes me think I’m not so great at checking email either.  Enough about my technology deficiencies.

Here is a link to Oregon Health Authority discussing Radon.

Here is a link to US Environment Protection Agency  discussing Radon.

Posted in Uncategorized | 3 Comments

Oh Shots, Welcome Back

Willing to accept that I was living in an alternate universe filled with doom and gloom wackiness, my doctors weren’t.  They did not believe my theory, “I’m just going through an unlucky spell”.

Tuesday I had an ultrasound performed and I have a blood clot in my left leg near my ankle.  Explains to a tee the discomfort I have been experiencing.  Well disguised because it snuck in while having joint pain from the steroid (decadron) taper.  Sneaky little blood clot.

FullSizeRender-23

I am back on my ol’ buddy, who I’d love to ditch, fondaparinux.  After two days it seems to be helping.  Still I’m keeping lefty elevated when I can.

Back on blood thinners is not horrible.  Not the way blood clots are!

Posted in Treatment Plans, Uncategorized | Tagged | 5 Comments

Waiting to Start

FullSizeRender-22

“Ya know what? I’m really looking forward to a new start. A fresh beginning.  I just need something, one thing is all.  It must go right!”.

“I’m an hour late? My appointment was at 8?  Oh crap.”

“Don’t worry about it hun,” says the phlebotomist, ” it’s always slow the week between Christmas and New Years”  She may be right.  But I hate, hate being late. Arriving at 8:45 for my NOT 9:00 but 8:00 appointment was totally unacceptable.

Thankfully I got worked into the schedule.

I alone seemed to be the only one who was unhappy about my tardiness.  I did apologize to every person I encountered on the way to the exam room.  SW and I were here to see my medical oncologist and Andi, my awesome nurse, eager to hear the latest brain MRI and chest CT results. Was brain surgery officially off the the table for now?  Has the most recent flare of brain swelling been sufficiently managed by the steroid?

5-seconds into the appointment Dr C managed to cover: hand shakes, Merry Christmases, your scans look good, no brain surgery for now, and predictions on making it until midnight on New Years Eve.  The important stuff.

It happened!  The good news.  The one thing I needed to turn it all around. The most perfect I am so totally pleased smile formed on my face.  A quick 45-degree turn to my right, enough to make eye contact with SW and to see we were wearing matching smiles.  Attention back to the speaking doctor.

“I’m going to a New Year’s Party now!”

We were safely home by 1:00am on the 1st.  A few hours later I barely made it to the bathroom.  My legs would hardly work.  By 4:00am my legs were throbbing, the bulk of the pain focused around my knees.  Tears streaming down my cheeks, I could barely eek out “Spencer, will you help me?”

The joint pain I had been experiencing on my steroid was haunting me at many times the intensity. Packages of frozen veggies were placed on the underside of both legs.  It was alarming when I could not lift them on my own.  SW had to lift and lower back down each leg.  Once sufficiently numb by a combination of ice and pain killers I drifted back to sleep.

I’m still waiting to begin my “new beginning”.  It seems almost silly now. I had some wonderful – new beginning – worthy news and did not celebrate it.  I instead waited for New Years Day and had a horrible down turn the early hours of the 1st that I am still waiting to be resolved. Could I be stuck in a dark comedy? The Twilight Zone?  Twin Peaks?

 

 

 

Posted in Test Results, Uncategorized | Tagged , | 14 Comments

I miss sleep.

IMG_2743I was all in my head!  So much pressure. Excruciating amounts of pain.  Dizzy. Nausea. Vomiting …and some.

Hours later, post admittance to the neurology ICU, the pain killer + steroid blend had me feeling quite  chilled out. Not exactly the way I intended to spend an early Saturday morning.

Countless medical staff and a handful of scans kept SW and I confined to a short stay in a  hospital sweet. Eventually, release was granted under the premiss that I’d be returning for surgery in my brain in 2-days.

Deliriously packing,  the call to tell me what time to check in appeared on my phone.   Huddled around the speakerphone, SW and I listened to Dr Ciporen, Director of surgical neuro-oncology at OHSU, inform me that for now, with today’s scan results, and my brain swelling symptoms being managed by steroids I would not be getting surgery tomorrow.  Ok. That is good. My radiation necrosis does not require removal, at this time.

My favorite. Watch and wait.  Reevaluate after next MRI.

Instinctively upon ending the call I crawled into bed. It’s all on pause. The daze came.

Coming down from not having surgery is a new challenge to face. Best no show date ever….  An emotional burden I still carry.  My headaches are nonexistent and in a few weeks I’ll be off steroids.

For now, I miss sleeping.

 

 

Posted in Uncategorized | Tagged , , , | 8 Comments

Big Smile

Yesterday a cluster of friends  working at Genentech left me a voicemail exclaiming”Alectinib is FDA approved!!!  ”

Water pooled in my eyes.

Tears of happiness.

Wow.

Wonderful.

So Significant!

Fantastico!

ALK+ lung cancer patients have another option!

As for me, I am er, I think, still following the trail.  Update on my past weeks, including hospital stay, soon.

 

IMG_2941

 

Posted in Uncategorized | Tagged , | 6 Comments

Profiles in Lung Cancer – Day 30

Welcome to the November 30th Edition of Lung Cancer Awareness Month 2015.  Trying to understand what is going on in November – read November 1st blog post. 

Nancy and Jamie at Hubers 014

I am happy to connect you all with lung cancer advocate Jamie Shull.

Jamie will be quite thrilled when lung cancer is a manageable, chronic disease, that keeps people living and living well.

She feels strongly, “Anyone with lungs can get lung cancer.” That is the message she spreads.

The cancer bomb exploded into Jamie’s life when her husband of 18-years, Kurt, was diagnosed with advanced stage lung cancer in December 2010.  She took on the roll as primary caregiver doing what ever it took to ensure the best care for her husband and their 14-year-old son. First line treatment took nearly everything out of Kurt. Unwilling to accept the way things were headed, Jamie, using her superior “get-shit-done” skills, found a clinical trial at a local teaching hospital – a turning point for Kurt as well as lung cancer as a whole. Jamie explains, “After a week on Crizotinib this frail man roared back to life!” Good times were had. Family vacations took place. Milestones hit demanded celebration.
Eventually, the relentless cancer maneuvered around Crizotinib and unfortunately a next step for Kurt was never taken. Jamie, her family and friends were able to witness first-hand the benefits of advancements in lung cancer research and treatment options.

Jamie continues her involvement with the lung cancer community and is a resource for patients, caregivers, nurses, and doctors. She is connected locally through Oregon Health and Science University and nationally through LUNGevity. Lack of funding in research is a huge concern of hers.

Jamie is still working her way through the trauma initiated with Kurt’s diagnosis in 2010. Engaging with this woman you know she has lived, loved, and suffered loss. She remains strong and fierce with a touch of tenderness; everything you would want to see in a mother, friend, family member or yourself. She is ready for anything – even more-so when wearing her favorite black boots.

Read Day 29 Profile HERE.

Thank you for joining us during Lung  Cancer Awareness Month for our Profiles in Lung Cancer blog chain. You can find links for all the November 2015 Profiles (as well as future Profiles) on LCSM Chat’s “Profiles in Lung Cancer” page. http://lcsmchat.com/profiles-in-lung-cancer/

(Note the page URL may change as LCSM Chat upgrades its website)
Posted in Uncategorized | Tagged | 2 Comments

Profiles in Lung Cancer – Day 19

Welcome to the November 19th Edition of Lung Cancer Awareness Month 2015. Trying to understand what is going on in November – read November 1st blog post.

I am happy to connect you all with fellow lung cancer survivor Anne Gallagher.

AG

Anne Gallagher spends her days as a patient navigator at Willamette Valley Cancer Institute in Eugene, Oregon. She is a valuable team member dedicated to all kinds of cancer patients, keeping a close eye on them to ensure that they receive great care in all areas of health.

Her professional career in healthcare began 11 years prior in Women’s Health. The transition to oncology came shortly after Anne’s own cancer diagnosis in 2002 at age 25; clearly a shock and turning point in her life.

Diagnosed with early stage neuroendocrine lung cancer, surgery was recommended. Specifically, removal of two lower right lobes. Surgery was successful. Remission achieved. Fast forward to 2008. Reocurrence takes place; now cancer takes up residence in the upper right lobe, the only remaining real estate up for grabs on the right side. In response, her medical oncologist prescribes an injectable anticancer agent, to be administered every 28-days. From this point forward, with only one brief interruption, Anne receives an injection every 28-days to control her cancer. Sounds easy, right? Not so much. The injection is managing Anne’s extremely rare type of lung cancer while it slowly causes bone damage and extreme fatigue.

Suddenly, it was clear. The cancer clarity. A calling of sorts. If she was to stay in healthcare it was imperative to be directly in contact with oncology patients.

Anne regularly attends the national LUNGevity Hope Summit in Washington, D.C. More often than not she has a speaking role at the event. The Summit is meaningful to her, it is the first place where she talked to someone who had the same surgery she had. Sadly, it was six years post surgery. She, as well as her oncologist, continue to be on the look out for an individual with her same kind of cancer.

“You don’t have to yell to make a lot of impact.” Anne says.

So true. It is her calm and inviting presence that draws people in. Her laugh is like a perfect mug of hot cocoa. It is sweet, warms you from within, brings a smile to your face; something you want to hold onto with both hands. She is an attentive listener. An old soul. Although don’t be fooled by her innocent look. If you don’t pay careful attention you may find yourself getting into late night mischief with her.

Anne gives her all at work and she doesn’t mind. “I feel like I’m here to take care of others,” she says with pride while wearing a grin. Clearly she gets great satisfaction from her career as she spends much of her diminished by cancer treatment energy there. With what remains, it is dedicated to family time. A proud aunt to five and sister to three. “My siblings are my best friends.”

“I’m no Mother Teresa,” she says with a laugh, “but I try to think the same way!”

Anne is a good egg. She is always on-time but doesn’t wear a watch. She’s classic like her favorite dessert, brownie a la mode. Without a doubt she is an asset to the lung cancer community.

Read Day 18 Profile HERE

Read Day 20 Profile HERE

Posted in Uncategorized | Tagged | 2 Comments

Profiles in Lung Cancer – Day 6

Welcome to the November 6th Edition of Lung Cancer Awareness Month 2015.  Trying to understand what is going on in November – read November 1st blog post.

I am happy to connect you all with fellow lung cancer survivor Jessica Steinberg (@chemosabemomma)

Facebook timeline 2 copy

If you are out and about in the Portland area you might encounter this dynamic woman on the Portland State University campus where she is working towards a second masters degree, this time in Social Work. If you happen to be just South of town, chances are good you’ll bump into her while in single parent mode. Parenting two boys, 10 and 13 who’d most likely describe mom as embarrassing, as she is juggling 16 items, 4 of which she forgot to write down and may likely be forgotten. If you are anything like me, you see Jessica at Knight Cancer Institute at Oregon Health and Science University where she checks in with her much liked Medical Oncologist while waiting for her next cycle of of her ALK+ cancer controlling targeted therapy pills. Alectinib, slated for FDA approval, has been successfully managing her cancer burden since February 2014.

Jessica is no stranger to other forms of cancer treatment for her Non Small Cell Lung Cancer (NSCLC). After her lobectomy in 2011 uncovered that she had advanced NSCLC, she has subjected herself to various chemotherapy agents, radiation, whole brain radiation, and targeted therapy to combat the cancer.

In her own words, “Cancer picked the wrong bitch!”. Her bold and daring personality teamed up with her natual ability to entertain makes her a successful advocate for the Lung Cancer Community. As a Caring Ambasadors active board member, she courageously speaks at the Oregon State Capital – demanding statewide attention to lung cancer. She also sees the need for what she calls “sidewalk advocacy” by running errands in her custom made t-shirt exclaiming “this is what stage 4 lung cancer looks like” that reguarly becomes a conversation piece. (If you are interested in a t-shirt leave a comment below for Jessica.) It seems that no task is too grand or too insignificant for her when it comes to advocacy.

Some of Jessica’s favorite movies include “Life is Beautiful”, “Like Water for Chocolate”, and “E.T.”, which are very different than her favorite written trilogy, “The Girl with the Dragon Tattoo”.

I will not be surprised at all when I hear in the not-so-distant-future that Jessica is a social worker in oncology, ensuring a positivie relationship exists between patients and doctors.

Family was, is, and will always be, what comes first for her. Her motivation, inspiration, and mindset come from her family and their needs. A close second is “Jessica’s Army”. A core group of friends that provide support of all kinds to Jessica and her boys. And if you are wondering, yes, Captain America, the 2011 version, is a member. (I am jealous.)

Jessica is consistent. What you see is what you get. I do hope that one day, far from now, she will be sourrounded by her boys, their partners, and possibly grandchildren; wearing her “this is what stage 4 lung cancer looks like” t-shirt and cozy black pants which are covered in cat hair.

Read Day 5 Profile HERE.

Read Day 7 Profile HERE.

Posted in Uncategorized | Tagged , , | 1 Comment

Lung Cancer Awareness Month 2015

kw speakingYup, November is the month, Lung Cancer Awareness Month. In this month, the great month of November, those of us impacted by Lung Cancer unite. Every day this month, a group of bloggers will be profiling people advocating on behalf of the lung cancer community.

Each blog post will have links to the previous day’s post, and point you in the direction of the next day’s post. This experience is intended to be fun and showcase a tiny fraction of those affected by lung cancer. Have fun with it! Enjoy!

Day 1 can be found here.

A list that will contain links to all posts can be found here.

Posted in Uncategorized | Tagged , | Leave a comment

The Going is Getting Good

Trend: Upward and excellent.

Cause: Two successful speaking events and one brain MRI that shows SRS did its job.

FullSizeRender-20Current Status: Designing next glass project; investigating what went wrong with my flat as a pancake, chocolate-banana bread.     Huh.

Posted in Test Results | Tagged , , | 22 Comments