I still have Lung Cancer.

Well, I still have Lung Cancer. And I am very aware that I have Lung Cancer. I am reminded everyday. Whether I am reminded because I can’t breathe just right, or when I take six miracle pills every night, or give myself a shot of enoxaparin after I take the six miracle pills or just because I feel a bit crummy and fatigued…I am aware. I am aware every time I look at my kids, every time I plan something in the future, every second of every day, I am aware.

I am so aware of Lung Cancer and how it impacts lives and I am so aware of the tragic survival statistics, that I remain surprised that EVERYONE is not aware of the tragedy of Lung Cancer.

May is Lung Cancer Awareness Month. In honor of this I will post some statistics about Lung Cancer in an effort to pass the word around and hope to compel others to pass on this information and at best act on it by participating in a Lung Cancer Event or donating to an organization such as Lung Cancer Alliance, Free to Breathe or Lungevity. Money is needed to support research so a cure can be found (and medications to prolong life until that cure is found).

• Lung Cancer is the second leading cause of death, next to heart disease.
• Lung Cancer kills more people every year than the next three deadliest cancers (Colon, Breast and Prostate Cancer) combined.
• Anyone can get Lung Cancer. About 65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers. Approximately 10-15% of lung cancer cases are in never smokers. While those 70 and older are more often diagnosed, it can strike at any age. I found out at age 43 that I had Stage IV ALK+ Lung Cancer,
• Lung Cancer takes the lives of 160,000 people per year, more than any cancer, yet less than 6% of all Federal Cancer Research dollars are spent on Lung Cancer.
• Only 17% of those diagnosed with Lung Cancer survive 5 years. If detected early survival improves dramatically. If diagnosed in Stage IV (like mine), the five-year survival rate is only 4.0 percent.
• Over half of people with lung cancer die within one year of being diagnosed.

Grim stuff.

But there is Hope! New treatments are becoming available which can extend lives and improve quality of life. This is thanks to research! I am a lucky recipient of medications that have extended my life. So if you are wondering if your donations matter, I know for a fact they do matter. Consider participating in a Walk/Run or Bike for Lung Cancer in your home area. The Lung Cancer Alliance is sponsoring a Run in Portland, Oregon on June 20. Here is a link to register:

2015 Lung Love Run/Walk

So, Happy Lung Cancer Awareness Month. Talk amongst your friends, share this information with a stranger, express your surprise about these statistics to whoever is standing near you.

I was invited to be honored as a Cancer Survivor at my oldest son’s after school program during their Cancer Awareness Activities this month. I am so proud of his After School Club for educating the kids about cancer and hosting their own Relay for Life! It’s a great opportunity for the kids to learn that they can impact something big, like Cancer, with their fund raising efforts or maybe even consider a career that leads to a cure for cancer! I say teach them to dream big and take action!

Speaking of children…  Here are a few recent pictures of my two boys (and one of me).   Life has been good the last few months and the Cancer has been challenging.  I will save that update for another post…

 

Progression

I have been away from my blog for most of the holidays. This was somewhat intentional because I just did not want Lung Cancer and all the scary thoughts it brings in my mental purview. Cancer and what it means in my life (or the shortening of my life) is never out of my mind. It is a constant companion but I try, like during this holiday season, to keep Cancer in the shadows of other happier and more hopeful thoughts.

Unfortunately, Cancer will not be ignored.  I was brought back to Cancer reality with a thud today.  My scans showed progression in both my lung and liver tumor.  This suggests that the medication I am taking, Crizotinib, is losing it’s effectiveness because the Cancer is figuring a way around it.  This totally sucks.

I am consulting with a Cancer Specialist in Portland next week to discuss treatment options.  I am also planning a consultation with a Lung Cancer Specialist in Colorado soon (this appointment was in the works before this news…thank goodness).

So after a little panic, a few tears and a big sigh, I am back to figuring out how to live with Lung Cancer.  I am trying to muster the Courage to again Hope for a long life.  Progression can take a bit of wind out of ones sails…

So much for keeping Cancer in the shadows.  It will have to be right in my crosshairs for a while.

Happy First Cancerversary! (Dear God…)

Holy cow.  It was one year ago today that I was told I have Cancer.  Lung Cancer of all things.  Stage IV of all stages.  The worst of the worst.  I remember it like yesterday.  Every detail.  Not good memories.  I feel terrified and sad just thinking about it.

(Dear God, please take away my fear and sadness and replace it with comfort and joy.)

Some people with Cancer, celebrate their Cancerversary’s with a celebration of life.  Celebrating that they have survived the year of cancer.  They take a bad day and turn it into a celebration.  Kinda an “F!!! You” to their illness.  I like that idea.  I just can’t seem to muster the strength to completely transform the day into a celebration.   It has, thus far, been the most devastating thing I have experienced in my life.  

(Dear God, please let there be no more devastation.)

So how will I celebrate my Cancerversary?  I plan to do nothing out of the ordinary.  I will take my youngest to get his hair cut, help my oldest with his homework, make dinner, read books to the kids at bedtime, take the Cancer miracle pill, give myself my 367th shot of Lovenox, then crawl in bed and try to find something funny to watch on Netflix’s.

(Dear God, thank you for the miracle of Crizotinib and Lovenox and for those who created it.)

I will have a very quiet celebration of daily life.  Something I have learned to cherish this past year.  I am just so dang happy to be alive and able to be doing these things with my family!

(Dear God, thank you for all the small pleasures, annoyances and mundane things of life.)

I have some goal’s for this upcoming year:

• Decrease my sugar intake.
• Become increasingly physically fit.
• Finish getting my affairs in order.
• Keep finding opportunities to make memories with my kids.

(Dear God, please help me to remain motivated to follow through on my goals.)

I have some wishes too:

• I wish to survive well for another year and hang on for another 17 years.
• I wish for the crizotinib to work for the entirety of next year and then some.  I have been taking it for 9 months. The average length of effectiveness is 7 to 10 months.  And it does not protect the brain from metastasis.

(Dear God, please, please let the crizotinib work for many more years and protect my brain from metastasis.)

• I wish for the health and happiness of my children and family.

(Dear God, please protect us and spare us from further anguish.)

• I also wish for strength and wisdom in the case we have to face cancer progression.

(Dear God, please lend me your wisdom and strength when I am in need.)

I also am very thankful:

• Thankful for the love and support of my husband.
• Thankful for the outpouring of love and support from friends and family.
• Thankful for the magic and joy my kids bring to my life everyday.
• Thankful I am now able to see the beauty in the mundane.
• Thankful for my body holding up after all it has been through and continues to go through.

(Dear God, Thank you for the Gift of Life!  I now know that there is no greater Gift.)

Happy 1st Cancerversary.

Segments of Eight

I have survived another segment of eight.   That is how I live my life now, in segments of eight.  Every eight weeks I get a  CT Scan of my chest.  Sometimes even an MRI of my brain. Then I wait another eight weeks for another scan.  In those eight weeks I feel like I live a life time of emotion.  Hope, despair, anguish, happiness, love, fear and so on and so forth. I focus on being present with my family as much as possible and curb my day dreaming (which is usually more nightmarish).  It is exhausting to be honest.  Living like you are dying is exhausting!!!   I realized I have got to figure out how to stop thinking about dying so much.  This is difficult as I continue my estate planning, journaling for my children and family and hear about the death of others with the same type of cancer.  And all the while knowing my cancer cells swim freely about my body searching for the right place and time to plant themselves.

Now, this past eight weeks was a pretty good segment.  Lots of distraction with Halloween and my parents visiting. Not too many emotional ups and downs, not too many “I wonder if I will see my son go to kindergarten” and not too many aches, pains or fatigue that made me think the cancer was growing.  To top it off, the segment ended with today’s scan showing stability!   Stability is good!  I still have evidence of a tumor in my lung and liver, however they are MUCH smaller than a year ago and my oncologist even said the visible tumors may not be “biologically viable”…in other words they may be “dead”.  There is no way to know that for sure, but it is a nice thought.

A big step for me today was to look at my scans for the first time since I was diagnosed.  I was always afraid to see the tumors because I thought they would be too frightening.  Perhaps baring large jagged teeth and glowing evil eyes.  Instead they were shadowy little figures that had to be pointed out to me.  They look small and rather benign (Sadly, they are not benign).  I also saw the scans from last January to compare with todays.  These scans showed the tumors after a few rounds of chemo.  I swear they did have jagged teeth and glowing eyes then!  Holy crap, they were big and scary!

Speaking of scary, Halloween fell inside this Eight Week Segment.  It was fun as usual.  We gave out 27lbs of candy!  Here is this years Halloween portrait!

Here is a picture of me with my two sons, taken on Halloween:

I am one happy woman in these pictures.  So happy to be alive and doing everything I am doing with my loved ones.

So now I start another Eight Week Segment of life.  I wish it were not like this.  I still wish the cancer away.  But I am learning how to enjoy life in Segments of Eight.

A good thing, a bad thing and some reflection on the holidays.

Last Sunday we completed our 5K walk for Free to Breathe.  Our Team, Metastatic Love (Stop Lung Cancer, Spread Love!) raised $3673.00!!  I am amazed at the generosity of others.  I am proud to say our Team won the award for raising the most funds for the Portland, Oregon event!  Free to Breathe is “working to double the survival of Lung Cancer patients by 2022 by funding research with the greatest potential to save lives, helping all patients fully understand their treatment options, ensuring molecular tumor testing is standard of care and doubling the number of lung cancer patients participating in clinical trials”.  I really believe Lung Cancer will be managed as a chronic disease, I just hope I am one of the people who make it into that generation of survivors.

Team Metastatic Love slogan.

My son and I just received our trophy for being the team that raised the most money.

Some Metastatic Love team members.

On a concerning note, a couple I met in Boston received some bad news today.  The husband, who is ALK+ has had progression of his disease.  They have three boys, the youngest of which is still a baby.   There are treatment options, however I can’t help but feel heartsick.  Why?  Why is this happening?  A beautiful family having to endure this hell.  What for?  I really, really hope there is a bigger plan and somehow this all makes sense in the end, because right now, I cannot, in the farthest reaches of my mind, fathom what the hell this is about.

I have my next scan on November 3. Scanxiety has not crept in yet.  I am feeling thankful right now that I am still alive 11 months after my initial diagnosis.  I remember telling the Oncologist at our first visit that I had to live 11 months so I would make it through my sons’ August birthdays and the start of school.  I felt desperate for that but at the time, not knowing I was ALK+, the doctor could not provide that type of hope and was saying 8 months is all he expected.  I am also nearing the second set of holidays with the knowing I have Cancer.  Halloween last year was my last “innocent” holiday.  I had no idea what nightmare was coming and how my life was to be turned upside down.  I look at the pictures of last years Halloween and feel a little sad.  I thought I had my whole life in front of me (40 years of more life), I thought I had “time”,

Halloween 2013. Not knowing of the nightmare that was about to begin.

Halloween 2013. All dressed up with my family, believing we had an abundance of time together.

I feel blessed to be nearing a second round of holidays with the knowledge that I have Cancer and that these could be my last holidays.  Maybe that sounds morbid, but I can promise that each moment of these holidays I will work hard to make memorable and special.  I will walk through these holidays fully aware of their importance. I will not be lazy about pictures and video, every gift I wrap and give will be done with deep love and  every moment with my children and family will be cherished in a way I would not have been capable of before the Cancer diagnosis.   If I am lucky enough to be doing this type of intense living until I am 100 years old, I will be the happiest 100-year-old woman in the world.  Cancer has opened my eyes and my heart. I am definitly a changed person.