I was very nervous about my trip to Chicago. A good friend was getting married, tickets were purchased and some down time with friends was greatly needed. So, I went.
I had this horrible feeling something was going to happen to Mom while I was guiltily galavanting around. Sure enough, as I took a swig of my beer (I know, super classy) and looked at my phone, I saw I had a voice mail from my brother during Laura’s reception. Mom was taken by ambulance to the hospital. She couldn’t breathe.
OK, c’mon, my Mom just literally finished a three week blitz of killer radiation treatments the day before. Give. Her. A. Break. Seriously.
Here’s an update I posted that day on the WTF? (Where’s the Funding) for Lung Cancer? Facebook page.
Friday, July 20, 2012
Wahoooo! Mom and Bob ringing the bell. Mom finished her 3 week radiation treatment blitz yesterday.
Let me hear some hallelujahs….or feel free to sing, “You Can Ring My Bell,” too.
So go the ups and downs of cancer. But, here’s where my Mom’s story is different than most. My Mom and I made a pact to tell her cancer story very publicly to create change… for those with lung cancer. Yes, lung cancer. You know why? Because ANYONE can get lung cancer. That’s why we’re not shhhhh-ing about it one bit.
Mom has Stage IV inoperable lung cancer and has never smoked a day in her life. None. Zippo. Nada. Zero. Yes, you might want to re-read that last sentence…and then definitely read on. Lung cancer is equal opportunity these days. All you need are lungs. Yep, it’s that simple…and that evil. NO ONE deserves it.
All cancer patients/survivors have to be made of steel to get through all the chaos this disease brings to them and their families. It MORE than sucks. Imagine, then, being a lung cancer patient, where probably the biggest and most painful side-effect comes not from chemo or radiation, but from society itself: STIGMA. I asked you to imagine being a lung cancer patient for a very good reason. It could be you.
Before I show you the latest set-backs of my Mom’s life with lung cancer, just a few more things you need to know. They are shockers.
- 80% of people diagnosed with lung cancer are people who have never smoked or former smokers who quit decades ago.
- Lung cancer and and its attached-at-the-hip stigma is killing more of us than any other cancer (more than breast, colon and prostate cancer combined).
- That’s right, it’s the #1 cancer killer of both men and women (more than 160,000/year), yet it remains the LEAST funded of the four major cancers by a LONG shot.
- The survival rate – It’s virtually remained unchanged for 40 years at just 15%.
Oh, get this – Dr. Apar Ganti, an oncologist who specializes in lung cancer at the University of Nebraska Medical Center, says this:
“We are finding that what we call lung cancer is actually multiple separate diseases that behave similarly. We have seen the characteristics of “never-smoker lung cancer,” i.e. specific gene mutations even in people who have smoked.”
Stigma. Be. Gone.
This is not acceptable us, so we’re trying to do something about it. This last week has been absolute hell for my Mom and for everyone who loves her. It’s not easy to chronicle. It’s painful to watch, but Mom and I are working hard to give those impacted by lung cancer a voice, challenge the status quo and increase awareness and funding for this horrible disease. Remember, ANYONE can get it. My Mom is anyone.
Here’s a compilation of this week’s updates I posted on the WTF? Facebook page:
Saturday, July 21, 2102
Mom is in the hospital. They are checking for possible infection. Need lots of WTF? mojo.
Sunday, July 22, 2012
Hi all. An update on Mom. Her nurse told me Mom has fluid around her heart that they are removing through a procedure at her bedside. She has a UTI and a touch of pneumonia. She’s on antibiotics and will also receive some blood. So, that’s all I know for now. THANK YOU all so much for your prayers, thoughts and mojo. Means the world. I send it right back to all of you enduring the same nightmare. I so hope for peace and no more pain…for Mom and all of you.
Later that day:
Hey WTF-ers. Just talked to Mom. Here’s a short video update. THANK YOU all for your love and support.
Tuesday, July 24, 2012
My heart is broken. Mom has an infection in her colon and a sac of fluid under her heart that needs to be removed ASAP. This is apparently a condition that will not resolve itself. If she undergoes the extraction surgery today, the doctors say she has 3 weeks to a year left to live. If she doesn’t undergo the procedure, obviously a lot less time. Mom and Bob are making that decision right now. I am on a plane in Chicago and feel absolutely helpless. When I talked to Mom briefly this morning, she was so tired and very down. I feel so badly. I will let you know as soon as I get any updates. Thank you for being there. Always. You are family.
Wednesday, July 23, 2012
Finally home and can update on you on Mom. Mom decided to have the extrication procedure yesterday and they were able to drain great amounts of fluid from her lungs & a tennis-sized ball of blood under her heart. She now has chest tubes and the next few days are critical to see how well she can breathe & not produce more fluid.
Long, long, long story short – she most likely went to the hospital due to pneumonia, then wound up with C Diff infection in her colon due to the antibiotics to treat the pneumonia. It’s probably a combo of the Tarceva, radiation and Lovenox – and the cancer that has brought on all of these complications. It’s hard for anyone to know for certain.
The extraction procedure went very well, but it is not a curative measure. It is for comfort and to hopefully extend her time. No one can put a time frame on anyone’s life, especially my “tough cookie” Mom’s. I am hoping to finally speak to her doctor today to get more details and perspective.
This pic of Mom was taken before her procedure. Isn’t she cute? Still smiling. ♥
I cannot begin to THANK YOU all enough. There just isn’t any possible way. I LOVE the vigil that was started. THANK YOU and let’s grow it. Please see a post from my Aunt, Kim Frey, below with details on that.
I LOVE you all with all of my being.
Later that day:
Pass it on, WTF-ers!!!
“Light a candle for Leslie…and Lung Cancer. They BOTH matter.”
Then, please post your candle photo to this page, along with where you are from. We are going to light up the online world!
Pic of Mom and her grandsons, Bennett and Cooper, today. This picture absolutely breaks my heart. You can see the pain on their faces.
Cancer isn’t fair. It’s beyond awful. What makes this situation even more sad and maddening is that there is a huge difference between “unfair” and “negligence.”
My Mom and so many of you are fighting a disease that has been virtually ignored for more than 40 years. It’s unfathomable. It’s wrong.
My Mom and I made a pact to create change for lung cancer – by telling her story – from beginning, to end, and beyond. We will not waiver. We will not settle. Ever.
ANYONE can get lung cancer. My Mom is anyone. Get rid of the stigma…and WTF? Where is the funding?
Thursday, July 26, 2012
Update on Mom. The biopsy of the fluid came back negative. Yay!! She has been in quite a bit of pain from the “pericardio window” procedure that drained fluid from her lungs and heart. About an 8/9 out of a 10. Breaks my heart.
They said she had a pretty good night and there is “talk” of potentially removing the chest tubes today. She is right at 50 ML of fluid, the cut-off mark, but I think they’d like to get that number down further. Me too. They may also give her a pain pump to help manage that dang pain.
How long will she be in the hospital? A good question. It’s a process of keeping the fluid out, being able to breathe better, the pain, and keeping all other vitals stable.
I cannot tell you how beautiful the candles are…and all your thoughts and prayers. They warm my heart and soul. Cannot wait to show Mom. I’ve been posting them all over social media land. THANK YOU.
You are seriously THE BEST.
This is a pic of Mom, hubby Bob and his son Peter. ♥
Later that day:
Look at all this awesomeness. Incredible.
In one day, people from all over the world posted 90 candlelight pictures. Here they are on Pinterest.
Had a great day with the kiddos….and have LOTS of candle pics to catch up on – but that’s a GREAT thing. Mom was going to call if she felt up to it. The pain was pretty intense today. I hope she is resting as peacefully as possible. This is a picture of Mom with my sister-in-law, Terra. ♥
Thank you all so much for the pics and words of hope and love. I told her about the online vigil and she was amazed. I am hoping she can see all the activity very soon with her own eyes.
WTF-ers ROCKETH!!!! ♥
Friday, July 27, 2012
Talked with Mom today. Still in a ton of pain. Her words: “I am miserable. This is a nightmare. I can’t even tell you how many pills I have to take. As much as I appreciate them, the doctors and nurses come in ALL the time. I wish they would just LEAVE ME ALONE.”
I feel so badly for her. On the bright side, she said she is breathing better and the doctors think they may take out the chest tube today. She sounded much better. A bit stronger. Yay.
Also, I have received a TON of messages here, private FB messages, emails, texts, etc., from so many of you. Thank you. They help more than you know. Please understand if I don’t get back to you right away…or, unfortunately, at all. There are just sooo many. This speaks volumes of just how caring and amazing you are. Please DO know that I am reading each and every message…and become more grateful by the minute.
Love you all googleplex infinity!!! More than Pop-Tarts.
Later that day:
Yay! Mom’s first chance to see all of YOUR amazing messages and candle pics. Bob’s daughter, Liane Lehrman, took her iPad to the hospital. And…
…the chest tubes are OUT. Wahoooooo!
Who’s with me on this awesome news???????????????
Shortly after I posted this great news, I was told ultrasound results showed two small blood clots: one in her neck (a continued problem spot) and one in her arm. They had to take her off the blood thinner Lovenox when she was admitted to the hospital because it was most likely part of the perfect storm that caused this whole mess. Back on the Lovenox she went – at an increased dose.
Mom’s doctors say, “A risk either way.”
Stop the Blame Game
It boggles my mind beyond comprehension. It defies logic on so many levels. How can we possibly think we are, or can, conquer the war on cancer by continuing to ignore lung cancer? This disease accounts for 30% of all cancer deaths. Chew on that for just a second – 30% of ALL cancer deaths.
Oh, that’s right…that stigma thing gives us a great excuse to keep putting reality off. It’s not a popular, comfy or easy topic, you know. It’s controversial, highly political, divisive, doesn’t win elections and frankly, it’s big business. So, it’s just more convenient for the majority of our government, the medical community and the public at large to grab that stigma crutch and hope they can lean on it a little while longer. Sorry. Time is up.
Mom and I won’t stop until there is change. True change. We don’t “do” convenient.
How can you make a difference?
Contact your congressional representatives to get their support of the Lung Cancer Mortality Reduction Act – the Lung Cancer Alliance’s huge initiative to call upon lawmakers to make lung cancer a national public healthy priority.