June? Oh Sugar!

IMG_6987“Hello?  Are you there?”

It’s been a while. Feels a little awkward. Like calling back that friend you have neglected the last several days that have turned into weeks. What will I say?  What is the reason for my behavior? I don’t necessarily need to address why, but it would be kind to state.

I’ve been up to very little. Energy is holding steady at a medium low; my activities reflect that.

Next week my 42-month relationship with alectinib will end. Without skipping a beat I will get to discover in’s and out’s of Pfeizer’s lorilatinib (aka PF 06463922).

Today, I sit unsure how things will go over the next few weeks. I do know for certain, if I need help, I will ask for it. I don’t have a need to go it alone.

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Best Worst News of My Day

Image-1-3“What, no honey mustard? Well that’s the worst thing I’ve heard all day!” I said while laughing to the extremely hip woman taking my order. Nodding her head in agreement she responded with something along the lines of – it is a bummer I know. Would you like ranch, an Italian vinaigrette… when I cut her off and requested blue cheese dressing please.

Sitting across from SW I continued to giggle, rather loudly. I couldn’t get over how funny this really was. A close to home brew pub – out of my most desired salad dressing was the worst thing I was told all day. Days later still cracks me up.

Not having a particular kind of salad dressing is no crime. It’s not worth crying over. Certainly not going to change my opinion of this pub. Knowing after one appointment with a medical specialist and one phone conversation with another medical specialist that my biggest upset of the day was salad dressing.

Oh, please universe, let me have more days like this.

 

 

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I want more…

“Thanks for keeping me alive, but I want more.”

I feel like one of the worst people in the world by owning these feelings. I can’t suppress them. Not speaking them feels worse. For me the clinical trial (for alectinib) that I am on requires me to complete quality of life (QOL) surveys every so-many-weeks. It is a pretty good attempt to capture how I am doing by asking questions like, “In the last week have you had diarrhea? In the last week, have you vomited? In the last week has your condition impacted your social activities?” And my favorite, “Over the last week how would you rate your quality of life?” My answer is most frequently 4 out of 7. Selecting a number, a reoccurring image pops up – my brother giving me a pin that shouts, “Hey, my life is shit but thanks for asking!” I smirk while circling the 4.

Seriously, I rate my quality of life 4 out of 7, consistently. Why do I accept that this is the way it is going to be? Is it because I have cancer? And life with cancer is supposed to be unsatisfactory? subpar? undesirable? miserable? I don’t think my care team or individuals who created my medication would jump on board and agree that I’m simply stuck in displeased land. In fact, the opposite is likely true. The community that surrounds me diligently works to ensure I am well taken care of and happy.

So, what’s with this low QOL? One component that seems to be not pulling their share of the weight is me.

A poor self-image plays a large part in this. I am filled with sadness looking at my unclothed body. Skin is blotchy, arms and breasts striped by stretch marks, wispy hair mostly covers my scalp, and swollen feet ache at the base of it all. Quickly I cover up in my robe. Getting dressed it dawned on me I need to put on non-pajamas – wear a necklace – whatever it takes to reset this attitude of mine.

For some people its new bath towels. For others, it is a new pillow. For me new undergarments. This drawer has not had many new comers since my diagnosis almost 6 years ago. Very sad. Not now though, I have several new soft under britches and bras that fit. Not because they are so old and stretched out, but measured to fit for my body. Now that’s what I call precision medicine.

Getting rid of the old dingy stuff is exactly what I needed. Dressing for the day I feel good about myself. Not to say I don’t have other drawers that might be hiding items that need to be set free. That will happen another day. This little change has boosted up how I rate my quality of life.

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Where to Start?

Life has been going by.  It feels fast pace but no.  My brain and body are operating on low. I can easily shrug my shoulders and think hey…I’m still operating which is a very good thing.

My time away from evil friend Dex was short lived. Needing to get 2 brain tumors on my left side zapped weeks ago put me back on steroids. Lovely! I’m sleeping a little. Joint pain most inconveniently seems to be settled in my feet.

Oh feet! They have been such a challenge. Severe edema blossomed in both legs from the calf down. Major discomfort! Compression stockings and potty pills came to my rescue. I can see my feet bones again and cozy shoes fit. I like happy feet. Currently they are not happy. Grrr dex!

image-1-2I proudly turned forty on the twelfth. So amazing! I am 40! Really! 40! It’s so darn cool! I feel like a little kid chanting loudly”nee-neer,  nee-neer, nee-neer, I-am-four-tee!” on repeat.

Honestly, I am in awe. I have lived to be 40 years old. Not all that long ago I was worried if I would make it through a week or a month. Life can be so mean and cruel at times. When things go good though, I get higher than a kite. Me making it, now a few days past 40, is spectacular.

So far the best thing about being in my forty’s was having a very large birthday cake and eating leftover cake for lunch.

 

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Moving Forward

 

It’s here. That New Year. Time to shape up. Get that ball rolling in a new/better direction. Take what you’ve learned over your last year to make this one, this shiny new one even better!

Peeling my right eyelid open on Sunday, the 1st day of 2017, I noticed a green light glowing on the wall. It seemed new. Shifting my focus slightly downward I discovered my charging laptop was the culprit. I must have forgot to put my hat over the charging light. Wonder what else I forgot after yesterday’s late evening out. I closed my right eye.

I am finally off steroids and thus, sleeping and dreaming again. It’s awesome! I protested taking each daily dose. After countless months on Dexamethasone, the negative side effects were obvious. Blowing up like a balloon, craving sugar, irritability, achy joints and unable to sleep were just a few.

Weeks ago, that Ah-Ha moment happened, I was able to see a few good things it did. Breathing was easier. Moving about was challenging but possible. Getting in and out of my car was a cinch. Going to the bakery at 6 am for just out of the oven doughnuts was easy since I was already awake!

I still don’t want to be on them again. Ever. Not long term anyhoos. I know it may limit how doctors treat my cancer in the future. For now, this is where my line is drawn in the sand.

Now, laying still; thinking I’m supposed to get things rolling today. Huh. The only rolling I’m going to do is roll myself, gingerly to my right side. My right side remains difficult to lay on. The Ol’ Noggin is still quite ornery from my craniotomy last May. Not much I can do to change that.

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Unable to fall back asleep on my right side, I fought my way out of tangled blankets to sit on the bed’s edge. Dangled feet search for slippers. My mind decides I am ready to take on 2017. Refrigerator shopping – here I come!

Hello 2017.

 

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I got the Waiting Room Blues

Wow.  Is this really happening?

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What time are my scans scheduled again?

 

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Ten Down

televisionWhen I set out to watch 10 American Classics I expected to be wow’d. I sure was right. Wow’d I was! I finished the last film, Some Like it Hot, two days ago. Saving this for last was not intentional what-so-ever. My local library had a long wait list to get through before I could borrow it to watch at home with my lap warmer, Yam. I watched it immediately. I wanted to close the chapter on this 10-classics endeavor.

Looking back on my 10…  I really liked two; mostly liked one; the remaining 7 were so-so. Many took multiple sittings to get through. I can see myself picking up the American Classic genera again in a few months. For now, I’m watching silly, laugh until your belly hurts comedy.

There is a time and place for everything.

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Lung Force Expo

fullsizerenderI’m looking forward to connecting with lung cancer folks at the forthcoming Lung Force Expo, which takes place on on Friday, November 4th just outside of Portland, in Clackamas. It would be great to see you there!

You will find resources, information and support at the LUNG FORCE Expo. This one-day, educational event at the Monarch Hotel and Conference Center on November 4th is designed for lung cancer survivors and their caregivers to learn more about the latest resources, research and developments related to lung cancer.

Topics include:

  • Being Your Own Advocate
  • Immunotherapy
  • Questions to Ask Your Lung Cancer Doctor
  • Stress Reduction Techniques
  • Nurse Navigation and Palliative Care
  • Caregiver Support

Learn more on the Lung Force site.

 

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Death Happens

I’ve discussed my Certified Life Cycle Celebrant and friend, Holly Pruett, on my blog before.  She’s great in countless ways.  When you are in her presence, immediately you pick up the calm and compassionate air that surrounds her. A gift she generously shares.

Today, I read about Holly in Willamette Week, a Portland weekly newspaper. She is one of two women featured in the cover story: Meet Two Portland Woman Who Make Their Livings Talking about the Ultimate Taboo: Death.

Satisfied grin evolved to big smile when I read a short section that anonymously discussed my “Death Over Pizza Party”.

Take the time to read the full article here.

Curious about my “Death OverPizza Party”?  Read about it here.

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Glamping, Hands Down

Terrebonne, OR bound to celebrate our 9th wedding anniversary. Located roughly in the middle of Oregon, it is no booming metropolis.  What they do have is Panacea At The Canyon.  Hello Glamping!

I’m going to make 2 suggestions.

  1. Book a Big Sky Hot Air Balloon Co flight.
  2. Stay as long as you can + one day.

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