If Only for a Second...

This is an absolutely lovely and touching video about giving cancer patients a moment of lightness while they struggle through their disease.  Click here to watch.

Decisions, Decisions

Last Thursday, I saw my neurologist.  I finally heard the words I've been waiting for...I have the option to discontinue the anti-seizure medication.  That's the good news.  With that option, she also gave me a lot of cautionary advice that if it has been the medication that has been preventing another seizure and I stop it, I may start to have seizures again and would not only have to go back on the medication, but wouldn't be allowed to drive for several months until they were sure the medication was at its full efficacy.  There is no rush to make this decision.  I can decide to begin easing off at any time, although she did suggest I wait until after the holidays.

The reason I am at risk for seizures is that even though the lesion(s) that caused them are gone, there is scar tissue there now.  Depending on the size and location of the scar tissue, it could potentially cause seizures without preventive medication.

So, what to do?  I've been wanting to get off this medication for a long time.  I hate taking drugs, which I have to do regardless, but anytime I can get off of one is great.  It is a nuisance to fill the prescription, to figure out when to take the pills when traveling across time zones and just having to take them at all.

I will mull these options over for a few weeks.  I'm leaning toward taking a walk on the wild side and going off the medication.  But we will see.  Your thoughts and suggestions are welcome if you wish to comment on this post.

Thanks.

One More Thing to be Thankful For

Although Thanksgiving has passed, I continue to be thankful for the many good things in life.  Today, yet another good thing - a clean MRI scan and normal blood work - was added to the list.

The next oncology visit is January 29, but I have an appointment with the neurologist on December 12.  I am hoping for more good things, like a reduction in the anti-seizure daily dosage.  Crossing my fingers!  If nothing changes, I won't post a message. 

Hope you all have a wonderful holiday season.  Peace and joy to all.

Excellent article & video on the scourge of lung cancer

On November 26, 2013, the Chicago Tribune ran this article about 31-year-old Meghan O'Brien, who has stage 4 lung cancer, and her battle against the stigma of lung cancer as a smoker's disease.  This stigma hurts lung cancer research and affects the type of support lung cancer fighters receive from others.  The money raised for research of lung cancer doesn't hold a candle to breast cancer.  Lung cancer is the top cancer killer and most people don't even recognize that November is lung cancer month - there are no ribbons, sports teams or merchandise calling for lung cancer support.  Meghan's story is further detailed in this video.

Please take a look at these materials and share them with others.  And one last favor, when you come across a person who has lung cancer, don't ask them if they smoked.  More and more, the answer is no, but either way it doesn't matter.  Nobody deserves this wretched disease.

What I Have Learned Recently about Mesothelioma

A fellow blogger recently contacted me to share information about another type of under- publicized serious lung disease, mesothelioma. 

Mesothelioma is a type of cancer in the lining of the lungs caused solely by asbestos so it is entirely preventable if we can avoid exposure to asbestos. 

Asbestos is naturally occurring and invisible to the eye.   Although U.S. federal law requires that newly manufactured products contain no more than 1% asbestos, any amount of asbestos can ultimately cause mesothelioma.  Roughly 30 million pounds are still being used each year.

For more information on mesothelioma and asbestos, click here for 8 Things You Should Know About Asbestos.

Our Awesome Trip to Africa

We just came home from a 16-day trip to South Africa this past Saturday.  It was amazing.  We had great weather.  I got to pet a giraffe, a lion cub, a cheetah and several other wild cats and feed an elephant.  During game drives we saw hippos, zebra, impala, nyala (a local animal similar to antelope), lots of giraffes and assorted other wild creatures.  The highlight was horseback riding on the Indian Ocean shores in St. Lucia and then riding the horse into a game reserve and having up close encounters with baboons, zebra and impala.  Cape Town was also great, with its beautiful shorelines, wine country and diverse cultures. 

An African photo safari was at the top of my "bucket list" of things I wanted to do in my life.  I am very grateful to my sister and brother-in-law for helping to make this happen by bidding on the game reserve visit at a charity auction.  It was the trip of a lifetime.  I am so grateful that my recovery from cancer has allowed me this great adventure.

Click here to link to some photo highlights of our trip.

Another Good Check Up

Hi there,

Had my check up today and all remains normal and well.  I'm good for another eight weeks!

Next check up is December 4.

I'm in a video promoting Imerman Angels...and other updates

A couple of months ago, I was asked to participate in a promotional video for Imerman Angels, the organization that matches newly diagnosed cancer patients with survivors of the same cancer so that nobody goes through cancer alone.  Some of you may know that I have been matched with over forty different fighters since I went into remission.  This organization serves such an important role in providing comfort and support to people when they need it most.

Additionally, I was invited to attend their first annual Tuxes and Tees Gala this past weekend where they debuted the promotional video.  Doug and I had a wonderful time and I felt like a mini-celebrity!

Click here to see the video.  It takes awhile to load and it is about 15 minutes in length.  I think you will find it inspiring.

On another note for those of you keeping track, my check-up that was scheduled for tomorrow has been postponed until Wednesday, Oct. 9.  I will post my update on the results as usual on or after that date.

Finally, I failed to post anything about the results of the Lung Run this year until now.  A huge THANK YOU to all that participated and donated to Team DL - we raised almost $4000 and had a team of fourteen at the event.  This kind of support keeps me going and energizes me to continue to  advocate for more cancer treatments and support others going through cancer.

Still Standing after Almost 3 Years!

This is just a quick post to share that I had my semi-monthly hospital check-up today and continue to have a clean bill of health.  Today's MRI showed no changes.  My blood work was all in the normal ranges.  Dr. Bonomi is pleased and so are we.

A great lead-in to my three year cancerversary on August 20. 

Next check up is Oct. 2. 

My StoryCorps Experience

Yesterday, I was at the Chicago Cultural Center in the StoryCorps recording booth to join Janelle, a fellow Imerman Angel cancer survivor, in a recorded conversation about our experiences with cancer and survivorship.

StoryCorps' mission is to provide people of all backgrounds and beliefs with the opportunity to record, share, and preserve the stories of our lives.  Since 2003, StoryCorps has collected and archived more than 45,000 interviews with nearly 90,000 participants. Each conversation is recorded on a free CD to share, and is preserved at the American Folklife Center at the Library of Congress. StoryCorps is one of the largest oral history projects of its kind, and millions listen to their broadcasts on their Listen page and on public radio.

Through Imerman Angels, the organization that matches individuals recently diagnosed with cancer to a survivor with the same diagnosis, StoryCorps has invited survivors to come in and record about 45 minutes of talking with one another and telling our stories.

Janelle is a lovely woman who was only seventeen when she was diagnosed with germ cell ovarian cancer.  She is now a healthy 23-year-old who is on the Imerman Angels' professional board for organizing running events to support the organization. 

Part of our conversation may or may not be aired on NPR (91.5 on the radio in Chicago), as they feature StoryCorps interviews every Friday on NPR’s Morning Edition. They will notify us if our conversation will be on the air.  If so, I will post when that will happen. 

You should also be able to find the conversation on the StoryCorps' website under Listen to Stories, once it gets uploaded to the site.

Good results, but sad news

I had my CAT scan and blood work along with a visit with Irene, Dr. B's nurse today and all remains well.  That's the good news.

But the good news was eclipsed by some very heartbreaking news.  I learned that my dear friend and lung cancer mentor, Marla, died on May 3.  She was a ray of light to anyone who knew her.  Her eyes danced with life and positivity.  When she was down, she would disappear off the grid so you never saw it.  I sensed things were going badly because I hadn't heard from her in quite some time.  But I wasn't prepared for this.  Marla was diagnosed with lung cancer just over a year before I was.  She was there for me in the darkest hours.  I always adored her, but after my cancer diagnosis, she was my inspiration.  This is a real loss for me and for this world.  My condolences to her loved ones and friends, of which there are many.  She was someone special.

Finally...a Perfectly Normal EEG!

I received the results today from the EEG I took this past Tuesday.  For the first time since I had the initial EEG - when they were still figuring out what was wrong with me - the results for this latest EEG were finally normal!  Yippee!  That was the last hurdle to normal functioning and health.

I will still have to be on the anti-seizure medications, but the dosage will be reduced and hopefully someday I will eventually be able to get off of them entirely. 

What a great way to kick off the Memorial Day weekend!

Brain Still Working...

Yesterday, I had my six-month check up with the neurologist.  She was  pleased to see my latest MRI results and that there are no changes - only scarring.  She is even considering reducing my dosage on anti-seizure medication - I didn't even have to ask her this time!  :)  It has been 2.75 years since I've had any seizure activity (and even then, it was only the one incident).

I will need to have another EEG first to ensure that there are no erratic brain waves still occurring.  If  the EEG looks pretty normal, then I'll be able to reduce the meds.  I'm crossing my fingers!

Milestones, Celebrations and Advocacy

April has already brought a lot of good things my way.  Today I had my visit with Dr. Bonomi along with an MRI and blood work.  Everything is normal once again.  Hooray!

April 7th marked the two-year anniversary since I first learned I was cancer-free.  Hip. Hip. Hooray!

With the help of my wonderful coach/partner/husband, I completed the 8k (about 5 miles) Shamrock Shuffle without stopping and with only minor stiffness and soreness afterwards.   This race has particular importance to Doug and me because we've done it for so many years, and two years ago we ran together in celebration of the fresh news that my cancer was gone.  But last year, it was a real slog to cross the finish line.  Since then,  I haven't been running this distance much as I feel it more than I used to - both during the run and afterward for a few days. I was really worried about whether I could get through the whole run, but I did.  Didn't break any speed records, but was slightly faster than last year.  I'll take it.  Hazzah!

I recently learned that WEGO, a cancer advocacy organization, has posted another video with me and three other lung cancer survivors entitled "Taking Control of Your Treatment."  If you want to see it, here is the link.  (It is the second video on the web page.)  This is the fifth video WEGO has posted on their website that includes me with other survivors.  Yippee!

Finally, my website, www.QuickTipsforManagingCancer.com, has had almost 500 visitors from a variety of countries and over 600 page reads since I first published it in late January - and I haven't started to heavily promote it yet to the cancer community.  Whoopi!

Still Going Strong!

I just had another check up today.  CAT scan, blood work and vitals are all normal. 

I requested to add on a scan of my hips as they have been giving me some discomfort lately, especially on a day after I have gone running - even for the shorter distances I've been doing lately.  It appears the aches are from aging and not from cancer - a bitter tradeoff, but I'll gladly take age over cancer!

That's all the news that's fit to print!

Introducing my Cancer Management booklet

I've written a very simple, brief booklet called A Survivor's Quick Tips for Managing Cancer that is meant to be used for quick and easy reference for people dealing with cancer.  It is free for downloading at www.quicktipsformanagingcancer.com and you are welcome to view, download and print it as well as share it with anyone you think it might help.

I've known I wanted to share my experience with others since early into my diagnosis so I've been collecting thoughts and ideas for a couple years before I wrote the booklet. 

My intention is for people to scan the table of contents, find a topic that looks interesting to them, read the page (each topic is no longer than one 4 x 6 page) and be done (unless another topic interests them at that time).  The small size is intended to make it portable to fit in a purse or back pocket so people can easily refer to it when they are thinking about something related to managing their cancer.

I learned how to build a website on my own to house the booklet so it can be a free download (using Kindle or Nook requires you charge people).  I am now looking for an organization to help with the cost of printing hard copies, which I'd like to leave in oncology waiting rooms and cancer wellness centers.  I'll also be contacting a lot of cancer support organizations and hospitals to spread the word about the booklet.  If you know of an individual or an organization that would be interested in accessing the booklet, please send the link to the website to them. My vision is to get the booklet in the hands of anyone who can benefit from it.

Thanks.