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!