A Happy Holiday Indeed

I just had my latest appointment with Dr. Bonomi, along with blood work and and MRI, yesterday.  Nothing new was found so I remain in remission.  What a great gift for the holidays.  I wish you all good health, happiness and success over this holiday season and through the new year.

Hooray for another lung cancer survivor!!

I just wanted to share the happy news that one of my fellow lung cancer fighters who is also my friend was declared to be in clinical remission on Thanksgiving day!  What a great thing to celebrate and give thanks for!  Way to go, Barb!  I'm so happy for you!

Please support Lung Cancer Awareness Month

Once again, I send out my annual plea to spread the word and contribute to the cause of eradicating lung cancer.  November is Lung Cancer Awareness Month.  Take a look at this video from Lungevity which gives a pretty personal perspective of how lung cancer impacts so many people:  http://www.youtube.com/watch?v=C2eRyEDZMsQ.

Lungevity is one of many lung cancer organizations that are funding lung cancer research; promoting more public awareness of this issue; and providing support to people affected by lung cancer.

Here are some of my favorite organizations providing effective and helpful resources for lung cancer:

Lungevity - http://events.lungevity.org/site/PageServer?pagename=homepage&autologin=true
Lung Cancer Alliance - http://www.lungcanceralliance.org/
National Lung Cancer Partnership - http://www.nationallungcancerpartnership.org/
GRACE - Global Resource for Advancing Cancer Education - http://cancergrace.org/
Uniting Against Lung Cancer - http://www.unitingagainstlungcancer.org/

They all have useful information for learning more about lung cancer and all are worthy of support in their goals of improving the state of lung cancer research, prevention, treatment and eradication for our world.

My Internet Video Advocacy Debut

Two postings in one day - that's a new one!

A few months ago, I participated on a web panel with 3 other people to discuss three topics - Coping with Lung Cancer, Scanxiety and Dealing with the Stigma of Lung Cancer.   There is also a video introducing each of the panel members.  The videos just posted at this link.

The video was paid for by the pharmaceutical company that makes my Tarceva in conjunction with the lung cancer awareness charity Lungevity.  I think these videos are a good step in creating more awareness and support for lung cancer.

Pictures from our Cruise through Greece and Turkey

It took longer than I thought it would for me to get my act together, but here is the link to Shutterfly with the "highlight reel" of pictures from our sailboat cruise to the Athens and the Greek Isles of Mykonos, Santorini and Rhodes and the Turkish ports of Bodrum, Kusadasi (which takes you to Ephasus) and Istanbul.  What a great trip!  http://share.shutterfly.com/share/received/welcome.sfly?fid=7688c72f14d97ada&sid=0Absm7Jo1ZOGTrQ

The story behind this trip is that Doug and I had originally planned to take a cruise through the Greek Isles for our honeymoon and it didn't work out for logistical reasons.  We never stopped wanting to take this trip.  This September marked our 20th wedding anniversary and that, in combination with my cancer diagnosis, prompted us to make this dream a reality.  It was worth the wait!

Another clear scan

I had another check up today.  The CAT scan showed no changes and the bloodwork was all in the normal ranges.  I am so thankful to continue my streak of good health.  It has now been over two years that I have been on Tarceva, which is longer than the median of 9-14 months before the body develops a resistance to the drug.  I hope to keep this trend going for a long time!

We just got back from a wonderful 11-day sailboat cruise through the Greek Isles and the coast of Turkey.  I'll be posting pictures on Shutterfly once I have a chance to make a "highlights reel" and will provide a link to the pictures on this blog for those of you interested in viewing them -  so stay tuned!

Finally - Progress in Focus on Research for Lung Cancer!

I've attached a link to a recent news item that is very exciting for those of us with lung cancer or pancreatic cancer, and our loved ones.  Congress has approved making research for treatment and a cure for these two cancers a top priority for the National Cancer Institute (NCI).  We are finally starting to get the attention to these diseases that has been missing for so long.  Yeah!

http://www.lungcanceralliance.org/news/lung-cancer-alliance-news/2012-lca-news/lca-announces-breakthrough-for-lung-cancer-research.html

A Great Day at the Chicago Lung Run

A HUGE "thank you" to everyone who donated and/or participated in Team DL at the Lung Run at Montrose Harbor yesterday.  The weather couldn't have been better, the group was great, the turnout for the whole event was amazing.

Our team of 18 people came in 3rd place in overall donations with $3916.00. (I believe there will be a couple other donations still coming in as well with company matches - thank you so much!)  This was a huge increase over last year, and last year we came in 2nd place in fundraising!  That shows how much this event has grown!

Kudos to Team Cindy Lou who took first place with $6430.00.  It was a special moment to meet Cindy Lou and share our similar cancer experiences with each other. You have a great family and team, Cindy Lou.  It was such a delight to meet you.

My dearest friend, mentor and inspiration, Marla and her Team MAM took second place with $4418.00.

I heard a rumor that the overall event raised over $100,000 - that's a huge amount and it is so exciting to see the growth of this event over the past 3 years that I've participated.  There had to be almost twice as many people as there were the first year I participated.  And I am recognizing more and more of them with each passing year! 

We are making inroads to greater awareness of the prevalence of lung cancer and finally getting some funding for treatments and cures!

Thank you, thank you, thank you - from the bottom of my heart.

Continued Good Results

The celebration continues - today's MRI and blood work at the hospital were all normal and I continue to be well.  I suspected as much, but it is always good to have it objectively verified!

My oncology nurse said today that my case has become rather "boring!"  I LOVE being boring (for once in my life)! 

In the Bonus Round!

Unless something terrible happens in the next 31 minutes, I will officially have outlived my estimated life expectancy at the time I was diagnosed with cancer.  August 20 marks two years since that day that turned my world upside down. 

I was supposed to have a check up last Wednesday, the 15th which would have confirmed that I am still hale and hearty, but technical difficulties with the MRI scanner caused my appointment to be canceled and rescheduled for this Wednesday, the 22nd.  Though the most recent medical confirmation that all is well at this point is over eight weeks old, I can live with that (pun intended).  I still feel great - went on a 4.5 mile run on Friday and an 8 mile bike ride today to pick up groceries for dinner.

Tomorrow Doug and I will have the day together and then meet our family for a celebration dinner.  I've been waiting for this day for a long time.  I've exceeded my expiration date and am now in the bonus round - there's no stopping me now!

Excellent Summary of What It's Like to Have Cancer

I thought I'd post a link to Jeff Tomczek's article in the Huffington Post about what he wishes someone had told him when he found out he had cancer.  It really hit the mark in many ways.

If you are interested, click here to view it.

Still Doing Well!

Just wanted to let you all know that I had my bi-monthly check up at Rush.  The CAT scan and blood work all look just fine.  Next visit will be with an MRI on August 15, five days before my  2-year anniversary of the cancer diagnosis!

My Kick-Off Speech for Deerfield's Relay-for-Life last night

I was asked by the organizer of Deerfield-Highland Park-Highwood-Bannockburn's Relay for Life to give the kick-off speech to get the event started. The speech I gave is written below for those of you interested in seeing it.

Here is a link with a local eNews article about the Relay:  Deerfield Patch Relay for Life article

Relay for Life is a 12-hour event - 6 p.m to 6 a.m. next morning where individuals take turns within their teams to walk the track (in this case, at Deerfield High School) so that a member of each team is on the track continuously through the length of the event.  Relay for Life is a fundraiser for the American Cancer Society.  There are many Relay for Life events throughout the country.


RELAY FOR LIFE SPEECH - 6/9/12

The phone rang early Monday morning.  It is my doctor.  “I’d like you to come in today.  I have an opening at 1:00, are you available?”  My follow up appointment to review test results had been scheduled for Friday.  This was not a good sign.  At that moment, I knew that my life would never be the same. 

I was right.  That appointment began a long, ongoing series of tests, scans, treatments and reports that would forever change my life.  I’d have to learn a new language with terms I never wanted to know - like “adenocarcinoma” and “stereotactic radiation.”  At the same time I was trying to master this new language, I had to make decisions – quickly – about treatment options that would impact the length and quality of my life.

My head was spinning – and not because of the cancerous lesions that had spread to my brain from my lungs.  I felt numb – like this was happening to someone else.  But it wasn’t – it was me.

Those initial days of diagnosis and treatment were an odd combination of whirlwind and super slow motion.  It was so easy to get lost or feel panicked.

The only way to get through those dark hours was with the support of others – to listen, advise, comfort, commiserate and manage the everyday activities that I couldn’t focus on at the time.  That support came from many places in many forms, including family, friends, community and organizations like the American Cancer Society and their many resources for cancer fighters.

I don’t know how I would have managed without the incredible support I received and I continue to receive.

My name is DonnaLee Caringella and I have stage 4 lung cancer with metastasis to the brain.  But I feel lucky.  I am lucky because research has made advancements in cancer treatment that have allowed me to live longer than I would have 8 or 10 years ago with the same diagnosis, some of that research funded by the American Cancer Society.  I feel lucky because of the wonderful people who have come into my life to help me – great doctors and nurses, family, volunteers from support organizations, old and new friends, even strangers.  I have experienced more goodness, generosity and kindness than I ever knew was possible.

As a result of medical advancements and incredible support from others I stand before you today in full remission with no evidence of disease.

I consider all of you at this Relay for Life today as my supporters because you are sacrificing your evening and sleep to be here and you’ve raised funds so the American Cancer Society can continue to help anyone who has cancer – and there are a lot of us.  I’m sure everyone here either has a personal experience with this awful disease or knows someone who has.  My sister is a university professor.  After my cancer diagnosis, she asked her class of 50 students to raise their hands if anyone close to them had or has cancer.  EVERY HAND WENT UP.  Cancer affects us all.  Like the disease itself, the impact of cancer spreads to many people beyond those who actually have cancer.  You are supporting them as well, since the American Cancer Society provides assistance to caregivers and families of cancer patients.

On behalf of all of us who have heard those fateful words, “you have cancer” and for all of their loved ones, I thank you.  You are making a difference.

EEG Explanation

I spoke to Dr. Angelopolous yesterday to get more explanation on the report of the sharp waves that appeared on my EEG during the awake stage.  She said they were infrequent, but they are not normal and are something that could lead to a seizure.  She is not worried about this, but does not want to reduce my medication when we have this result since it does indicate a higher than normal risk of having a seizure.  It is "barely abnormal," but abnormal none the less.

Latest EEG results are in

I had the EEG done on the brain last Friday, May 11 and got the results from the neurologist's office today.  The EEG is normal, but there was a "rare spike" in a brain wave reading during the awake phase of the EEG.  I don't know what this means exactly and plan to set up a phone call directly with Dr. Angelopolous to get more information.  But the fact they still say the EEG is normal tells me there is no cause to worry.

The more disappointing news is Dr. A wants me to remain at my current dosage of the anti-seizure drug.  Arrgghh!!

Neurologist Appointment and Next Steps

I just got back from my appointment with Dr. Angelopolous, my neurologist.  She was pleased with the MRI and blood work reports from my last visit with Dr. Bonomi - everything looks great. 

She wants me to have another EEG to see if there has been improvement in some of the brain activities that had been compromised by the cancer and its treatment.  If the results improve over last May's EEG, I may be able to further reduce the levels of anti-seizure medications I have to take each day.

So I will make an appointment for an EEG in the next week or two and hope for good results.  I'll post again when I have those results.

Over 1 Year NED and All is Well

I just got back from my latest check up at Rush.  The MRI was clear (other than some radiation scars, to be expected) and my blood work showed everything comfortably in the normal range.  It has now been over a year since my April 7, 2011 appointment when they first discovered I had No Evidence of Disease (NED).  I'm feeling great and living a normal life with a little more than normal appreciation.

Next event is a check up with neurologist on May 2 and then run the 5K Lung Run in Deerfield on May 6.  If anyone would like to join Team DL for the run, be there for support, or make a donation to the cause, information is available at http://events.lungevity.org/site/TR?fr_id=3260&pg=entry. 

Thanks for checking up on me!

Finished the Shamrock Shuffle

Although far from my best time (I think it is my worst!), I am happy to have finished the 8k (4.8 mile) run through downtown Chicago yesterday with Doug.  We have done this race for many years, but it has taken on greater significance since it was the weekend after my "all clear" report from the oncologist last year, so now it represents defeating cancer. 

I was worried I wouldn't even finish this year because I haven't been working out as hard and training as well as I had in the past and I have been exhausted by running four or fewer miles since I resumed running in the nice weather we've had.  Doug was a great coach who sacrificed his own speed and time to stay with me and keep me on pace and focused. For the second year in a row, we crossed the finish line together holding hands up high.

Another Good Report!

I had my six-week check-up today (actually it was seven weeks since we were on vacation in Arizona last week).  Results were all good - CAT scan looked the same as before and blood work was all in the normal ranges.  Dr. Bonomi seemed pleased that I've maintained this status and that the Tarceva continues to work for me.  I even convinced him to space my appointments out to every 8 weeks!  :)
So the next check up will be April 23.  Until then, no news is good news!

PBS Broadcast Explaining My Tarceva Treatment

Doug’s mom informed me of this broadcast on PBS this past Friday.  There isn’t anything really new in it, but it clearly explains the status of my Tarceva treatment and the ways they are looking for the next line of defense against lung cancer that responds to this type of treatment.  (By the way, contrary to the information in this broadcast, Dr. Bonomi believes he does have other treatments to try if the Tarceva ever gives out on me.)

You can either watch the video or read the transcript below it.  Here is the link:  http://www.pbs.org/newshour/bb/health/jan-june12/cancer_01-13.html  

Please keep those prayers, intentions, chants or whatever positive force you subscribe to coming so that they find further advancements and maybe even a cure sometime soon.  And please help build public awareness of the serious need for continued research for a cure for lung cancer, as funding for these research advancements is critical.

Thanks for all of your support.

All Good from Today's Dr.'s Visit

Happy New Year!  I wish everybody health, happiness and prosperity for 2012.  My new year has started out well with a normal MRI brain scan and blood work.  Yippee!