Why the Inequities?

You know, I try to stay really upbeat most of the time. I am fairly successful at it. Like Dann Wonser says, most trials and tribulations we lung cancer survivors face are very tiny, while cancer is VERY BIG. (http://www.dannwonser.com/blog/a-little-disaster-can-be-a-good-thing/5/4/2015 … you really HAVE to read this, it is hilarious!). I think many cancer patients agree that we no longer sweat the small stuff … and most everything we face in our lives besides cancer is small stuff.

But, I came across the following article today: http://www.ksat.com/content/pns/ksat/news/2015/05/08/questions-raised-over-funding-for-cancer-research.html. It distressed me a lot. As did most of the reaction I received after I posted on Facebook about it.

The article was written by Myra Arthur, an anchor/reporter for ABC affiliate KSAT-12, a San Antonio, TX affiliate. Ms Arthur questions, as do I, why funding for lung cancer research trails so far behind that of other cancers, especially breast and prostate. Her advocacy makes me wonder if somehow her life, too, hasn’t been touched by lung cancer. Most people ignore it otherwise. That’s just the sad fact.

Facts – Ho Hum … But Necessary!

Here are some facts about cancer – some good, some not so good:

1. The two largest federal agencies that fund cancer research are the National Cancer Institute and the Department of Defense. These two agencies funded breast cancer research at $802 million in 2014. Prostate cancer research received $334 million.

2. Breast cancer is expected to be found in 234,190 men and women in 2015. (That’s right! Men can get breast cancer, too!) During 2015, 40,730 people are expected to die from breast cancer. That’s too many, for sure, but basically, if you get breast cancer, you have very good odds of surviving at least five years. These odds have increased exponentially over the past few years as more and more attention has been given to the disease.

A whopping 29% of all cancers diagnosed will be breast cancer. About 15% of all cancer deaths result from breast cancer.

3. Prostate cancer is the most common cancer among men. It nearly seems like every man is going to be diagnosed with it if they live to be old enough. I have gotten so cavalier about it … “oh! prostate cancer. minor inconvenience. treat it. be done.” I wasn’t quite so sure of myself when one of our very best friends died from it only months after diagnosis. (I think he waited REALLY long before seeking treatment and it had metastasized throughout his body.)

So, the facts for prostate cancer are: 220,800 men are expected to be diagnosed with prostate cancer during 2015. Prostate cancer will account for 9% of all cancer-related deaths this year.

4. And then there’s lung cancer. Research funding from the two major federal agencies for this disease during 2014 was a whopping $265.6 million. Let’s remember. Breast cancer got $802 million and prostate got $334 million. Hello????

During 2015, it is estimated that 115,610 men and 105,590 women (total of 221,200) will be diagnosed with lung cancer. Most of these diagnoses will be late stage because lung cancer typically doesn’t make itself known until it has metastasized. It is somewhat treatable if found in early stages, but in late stages, the prognosis is downright bad.

Lung cancer is expected to claim the lives of 86,380 men (that’s 28% of all cancer deaths) and 71,660 women (26% of all cancer deaths) for a total of 158,040 people succumbing to lung cancer in 2015. An awful lot of families are losing their children, their moms and dads, and/or their grandparents to this insidious disease.

So, the likelihood that you’ll get breast cancer if you are a woman or prostate cancer if you are a man is somewhat greater than that you’ll get lung cancer. Pray that you get one of these cancers and not lung cancer. Because, if you get breast cancer, you have an 89% chance of surviving at least five years. Prostate cancer has even better odds. Over 99% of prostate cancer survivors will still be living life in five years.

But, if you are one of the unlucky ones who gets the lung cancer diagnosis, you have much worse odds. Let’s just take a quote right out of Cancer Facts and Figures 2015, a publication of the American Cancer Society:

 The 1- and 5-year relative survival rates for lung cancer are 44% and 17%, respectively. Only 15% of lung cancers are diagnosed at a localized stage, for which the 5-year survival rate is 54%. More than half (57%) are diagnosed at a distant stage, for which the 1- and 5-year survival is 26% and 4%, respectively. The 5-year survival for small cell lung cancer (6%) is lower than that for non-small cell (21%). 

(http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf)

Wow.

Outrage

So, does this make any sense to you? Because it sure does not make sense to me.  It breaks my heart at the same time as it totally infuriates me.

Did you know that ONE in FIFTEEN will be diagnosed with lung cancer? Those are some pretty scary stats. Most of us have more than 15 people in our circle of family and friends. That means you are very likely to be directly affected by lung cancer. Either because a loved one is diagnosed or because you, yourself, get that news someday. When the word comes that you or your loved one has lung cancer, I wonder if you are going to wish more had been spent on lung cancer research? Because right now, the odds that you will live even one year after lung cancer is found in your body are very, very slim.

There is no stigma associated with getting breast cancer or prostate cancer or colon cancer or, I suppose, any other cancer. But, people, in general, seem to think that people who get lung cancer deserve it. After all, isn’t lung cancer the disease of smokers? People know they are testing fate when they pick up those cigarettes. So, let them just suffer the consequences of their actions, right?

Well … first of all … NO ONE and I do mean NO ONE deserves to get cancer of any kind. It is a fact of life, I guess, that most all of us will be impacted in some way by cancer if we live long enough, but none of us deserve to get it.

Cancer is not a fun disease to treat. People are sick, sick, sick. And often lose their hair. And all of their energy. And their memory.

And, it is certainly not a cheap disease to treat. One … ONE chemo treatment that I had cost over $34,000 and that was after a $22,000 grant was applied. I had those treatments every three weeks for six or seven months. And, that was just the cost of the drug. It didn’t include the doctor, blood tests, or facility usage. Cancer can wipe a family out financially in no time.

But, back to the stigma associated with lung cancer. Did you know that 60 to 65% of all lung cancer survivors (because you become a survivor from the moment you are diagnosed) either have never smoked or are former smokers? In my case, I had broken the addiction five years previously. My cancer is one that both smokers and non-smokers get so there is no clear evidence that my smoking caused my cancer. It is also the same kind of cancer as my dad died from back in the 1970s.

I attended a LUNGevity HOPE Summit in Washington, DC last week. I was amazed at the 150 survivors at that event. One girl was only 20. Her late-stage lung cancer was found (finally) when she was 19. Another beauty was 24. She lost part of a lung to lung cancer. Heart-breaking. Neither girl smoked. Both were gorgeous. Both were physically fit. Both girls had such a difficult time convincing their doctors that there was something more than asthma going on that they didn’t have their cancer discovered until it had metastasized.

Even doctors have an errorenous  image in their heads as to what a lung cancer patient looks like. So, while they are lollygagging along treating symptoms and never even entertaining the idea that there might be something more serious going on, the cancer cells are spreading all over the body.

I met men and women who bicycle hundreds of miles a weekend. Coaches. Vegetarians. Physically fit, well-nourished, non-smokers. Lots of them. Lung cancer survivors, one and all. I don’t know that an average age of attendees was calculated, but I would guess it was around 45, maybe less.

All of this is to say that your mind’s image of a lung cancer patient is probably wrong. He or she is probably as physically fit as you are. And, s/he is probably not as old as you imagined. And definitely likely does not have tobacco stained fingers that are still shakily raising that nasty cigarette up to be smoked. He or she might be your sister or your brother, your mom or your dad, or your best friend. Or you.

The stigma that just won’t go away STINKS. Worse than cigarettes and we all know how bad they stink. And, the stigma is far more deadly than cigarettes.

It is causing doctors to misdiagnose or delay diagnosis until the odds of survival have decreased to almost nothing. It is causing the general public to think it is fine to underfund lung cancer research. It is causing a lot of people to die deaths they do not deserve.

The Good News

The news is BAD when we look at funding, awareness, and the number of people being diagnosed and dying from lung cancer. There really are not a l ot of optimistic things to say about those things.

But, in spite of the limited funding, our scientists and oncologists are making significant progress. This is an exciting time in the research field. They are on the brink of making some discoveries that could change some of those dire statistics.

At the HOPE Summit, we heard from some of the up and coming talents in the world of lung cancer research and they were inspiring. We have targeted therapy drugs coming. Immunotherapies. Perhaps even some chemotherapies that will be less toxic. I can’t imagine the inroads that would or could be made if only lung cancer was given a significant amount of funding like the other two major cancers get.

Tehre are a few groups out there working hard to raise awareness. As awareness is raised, perhaps more big corporations and well-known names will jump on the bandwagon. CVC has recently begun a campaign to raise money for lung cancer. It is the first corporation I know of to begin backing such a campaign. As awareness is raised, there will be more money for research. But, there will also be more lives saved because the image of the old smoker with lung cancer will be replaced by the young vital nonsmoker with lung cancer. People will begin to realize that they are not immune to it just because they never smoked. And then we will have real progress. It is a day I hope I live to see and I have developed a passion for doing what I can to help that day come sooner rather than later.

Won’t you help me?

I just came across another article that I want to share here. It was written by Jamie Gorenberg who wrote for “Desperate Housewives” after her mom, a person who quit smoking 40 years earlier, was diagnosed with lung cancer. I want to share it with anyone who happens to read my blog because she says, more eloquently than I, how it feels to have someone you love diagnosed with lung cancer.

http://www.standup2cancer.org/article_archive/view/lung_cancer_coming_soon_to_a_non_smoker_near_you

 

Flower of Hope

I never bothered with flowers or anything when I worked – there wasn’t time. I was way too involved in agility and other activities to want to mess with flowers. I liked what other people had, but they were just too much work for me.

But, when I retired, I had more time. A lot more time. I needed something to fill my days with joy so I started filling pots with flowers. And, I found that those flowers brought me great joy. I would get up early and go sit out in the backyard and enjoy the gorgeous flowers and the serenity of it all. I had bird feeders spread around too. I also enjoy watching the birds and butterflies! Not the mosquitoes. I can definitely do without the mosquitoes.

Rosemary, marigolds, and lemon balm are all supposed to dissuade mosquitoes from making a home near you. Doesn’t work. I have tons of rosemary (I love it), pots of marigolds, and a thriving lemon balm and I also have giant-sized, hungry mosquitoes.

But, mosquitoes are not the topic of this posting. My flower of hope is.

The red verbena is my flower of hope. And there is a good reason for that.

Last year, I bought a beautiful hanging basket that had trailing petunias and verbena in it. I loved it, but it was not cooperative with me. It did not thrive like most of my plants do. When I left to go to New Mexico with my son, it gave up the ghost entirely.

I took the pot down and put it aside. It was a pretty pot so I thought I might replant it. I didn’t empty out the dead plants, but the pot was totally ignored. I did not water it or pay attention to it. Until, one day I looked at it, and lo and behold, there was a green plant and there were blooms!

I eventually pulled all of the dead plants out of the pot and started taking care of the little verbena that had come back from the dead. It flourished through the rest of the summer, but stayed pretty small.

Winter came. I took what was now a scrawny little plant with two little stalks of leaves up to the patio and diligently covered it along with other plants I tried to save every time the weather was going to be really cold. It didn’t look good, but it didn’t look dead, either!

When spring arrived, my little verbena was definitely not going to win a contest for most beautiful plant. But, it was alive. Two little stalks of alive! Hope! This feisty plant that refuses to die!

It has survived tremendous odds. It initially came back from the dead, surviving not having water in the hot Texas sun. It isn’t a perennial. It really shouldn’t have made it through the winter.  But it did!

I have a vested interest in keeping it alive now. It is my hope flower. It keeps on keeping on even when the odds are stacked against it. It reminds me of me. And I want to keep it alive and thriving … and I want to stay alive and thriving too!

Attitudes and a Crazy Bus Ride!

 

Last weekend, I attended LUNGevity’s National HOPE Summit that is held every year in Washington, DC. If you have lung cancer, consider attending a HOPE Summit. You will leave so uplifted and so hopeful! There is much happening in the lung cancer research field right now. These are exciting times!
But, the purpose of this post is actually to tell a story about a mishap that could have caused tempers to flair but instead found everyone laughing and having a great time.
LUNGevity treats its participants like royalty. On Saturday night, we took buses to the Old Angler’s Inn. A number of us loaded up onto Bus #5 (the last bus). I noticed right away that our bus driver had Google map directions that he was trying to read as he was driving. I didn’t say anything to anyone else about it until we had been on the road for quite some time and the driver started to make a turn, stopped pretty much in the middle of the intersection for a long while, and then continued forward back onto the freeway. DC traffic is pretty wild … his driving was making it worse!! Anyway, I mentioned to the person I was sitting with that the driver was clueless as to where we were going.
It wasn’t long before that fact filtered through the bus and soon we had several backseat drivers telling the actual driver where to turn next. By now, we had been on the road well over an hour to take a trip that was supposed to have been less than 30 minutes away.
About the time we had gotten the driver back on track (we were going to have to retrace most of the route we had already taken in order to get to the restaurant), all sorts of warning signals started ringing on the bus. We weren’t ever sure if we were nearly out of gas or just what the problem was, but the bus was in distress! The bus driver kept saying he was given “bad bus.” (He didn’t speak a lot of English)
We got him to pull of into a scenic area … for a moment . .. but then he pulled right back out into the DC traffic … bus dinging away with the warning bells … and bus without a lot of compression. We had a number of drivers going around us giving us the one-finger salute…
Finally, the driver was convinced to pull off into a lovely park area while we waited for the bus company to send help! Some of us bailed off of the bus so he would, hopefully, not decide to reenter the traffic!!!!

 

 

 

It was getting late. Most of us had not eaten for hours!! The groups that rode buses 1-4 had eaten and were now just waiting on us and wondering where in the world we were!
Everyone on that bus was either a caregiver or a lung cancer survivor. You did not hear complaining. What you heard was a ton of laughter and multiple jokes. We have learned that little incidents like that make life interesting. There was no reason to get angry or uptight. I suspect if all of us had been on a bus together BEFORE we were acquainted with living with cancer, the attitudes would have been far, far worse. Trivial little things like that are indeed trivial to us now.
It ain’t a picnic to have cancer, but you know, it sure does something to improve attitudes and outlooks on life. Or it has for those of us who attended that Summit.
For a hilarious account of this experience, go read what Dann Wonser had to say about it:

 

Thanks LUNGevity

5th Annual LUNGevity National HOPE Summit 

What is it?

I am home now from an AWESOME weekend that was spent in Washington, DC at the LUNGevity National HOPE Summit. It is held for lung cancer survivors and their caregivers every year. This year was the 5th anniversary. The event has grown from 17 survivors meeting in a small room to over 150 survivors, plus their caregivers, meeting in a large ballroom.

Lung cancer survivors who are attending for the first time are provided with the opportunity to apply for a generous grant that pays for airfare and hotel costs. Wow! What an opportunity!!

http://lungevity.donordrive.com/index.cfm?fuseaction=cms.page&id=1080&eventID=534

 

Lots of HOPE

It was fascinating being in the ballroom with so many lung cancer survivors. We spanned many years. One gorgeous young lady is only 24 … and she’s already recovered from having part of a lung removed due to lung cancer. There were way too many young people there in their 20s, 30s, 40s … and then there were some of us who were older, too. Young, old, skinny, fat … black, white, yellow, brown … cancer does not care. It attacks us all.
No matter the age, race, nationality, or religion, the group as a whole was the most cheerful, hopeful group ever. Considering we are fighting the most deadly form of cancer there is, that’s remarkable in and of itself!
LUNGevity has trademarked May as Lung Cancer HOPE Month. We are hoping to raise awareness through a “What Takes Your Breath Away?” video campaign. I don’t think it will catch on among most of my friends … I’m sorry, they just are not all that supportive of this particular fight.  I don’t really know why that is the case. Regardless, I am hopeful that it will gain popularity among others so that more people will be aware that lung cancer happens to people with lungs, not just smokers. (See below)
It was wonderful to hear doctors and scientists at the HOPE Summit talk about the new treatments that are coming down the pike. It is sad that lung cancer is so poorly funded. It kills more people than any other cancer. In fact, during 2015, it is expected to be responsible for 27% of all cancer deaths among men and women. (http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf)
According to the American Cancer Society publication (link above), 44% of lung cancer patients will survive one year. Only 17% are expected to survive for five years. For late-stage cancers like mine, only 26% survive a year and 4% make five years.
I am so fortunate. My traditional chemo regimen quit working about 7 months into my diagnosis. Were it not for the clinical trial I got into, I would have probably been one of the 74% who don’t survive a year. But, because of research and new technologies, specifically, immunotherapy, in my case, I am hopeful I will be in the 4% that are still alive and well five years after diagnosis.
But, I disgress … back to the Summit!
The packed room was filled with people who were quick to laugh, cheer, and tell their stories. Despite challenges, I don’t think there was anyone there who was not filled with lots of HOPE. Doctors and scientists were hopeful, too! Lung cancer research needs much, MUCH more funding, but even with limited research dollars, the scientists and doctors are making tremendous strides. It is so exciting to hear about targeted therapies that attack just the bad cells and immunotherapy that works by building up the cancer patient’s own immune system so that it can fend off the cancer. Anyone who has ever suffered through chemo knows how exciting it is that there are drugs available or coming soon that don’t send you to bed, wondering if treatment is worse than just dying from cancer.
I am sad that I didn’t take pictures at the National HOPE Summit. I was so involved in listening and chatting with others who have “been there done that,” that I never got my camera out of my purse. But, I’ve seen lots of pictures that other people took. And the smiles are infectious!!! People were having FUN all through the hotel!

Lung Cancer Awareness Campaign

So, LUNGevity is hoping the lung cancer awareness campaign will go viral. I mentioned it above, but wanted to both provide more information for those of you who might wish to participate and to post my first attempt. I decided today that I was going to try to do several. There are LOTS of things that take my breath away besides lung cancer. I’m going to try to highlight several of them. Some of my friends will probably be tempted to start blocking my Facebook posts because they are going to be tired of hearing about lung cancer. But, it is just that important to get the word out. Lung cancer is not a disease to ignore. It just isn’t.
To learn more about the campaign, go to http://www.lungevity.org/support-survivorship/lung-cancer-hope-month .  Please, please, PLEASE consider participating. The more people who will jump on the bandwagon, the better.
I’d be surprised if anyone reading this blog hasn’t been impacted at some point by lung cancer … a grandparent, parent, sibling, or friend or friend’s family … lung cancer is so common that almost everyone knows someone who has or has had lung cancer.
Let’s get the word out that:
  1. No one, absolutely NO ONE, deserves to have any kind of cancer, INCLUDING lung cancer.
  2. Smokers are NOT the only people who get lung cancer. Young, athletic people who never smoked are being diagnosed way too frequently. Sadly, doctors are MOST likely to let their cases go on and on before diagnosis … even doctors are influenced by the old campaigns that blamed smoking alone for lung cancer.
  3. There is HOPE!!! There is not as much as I wish there was, but there is hope. And if we could get more $$$$ directed toward lung cancer research, that hope would be multiplied many times over. It is incredible what our research community has done with such limited funding. It could grow exponentially if we could get more money to them.

My First Attempt

I tried doing a selfie video this afternoon for about an hour. I never really got anything worth publishing. I may set up my good camera on its tripod and try again tomorrow or Wednesday. In the meantime, here’s what I’ve come up with for my “What Takes My Breath Away” video:

Gotta Love Good News and Awesome Doctors!

Here I am … waiting on my treatment drugs to be prepared. For those who don’t know,  it takes about an hour, barring no problems,  for the pharmacy to prepare the drugs. For my treatments,  it also takes an hour to drip.

So, here’s the process:

  1. arrive at the hospital, preferably 15 minutes or so before 1st appointment. The first appointment is for blood draw. This is where my port is accessed and three or 4 vials of blood are drawn. 
  2. Go back to the waiting room for 45 minutes or an hour. During this time, the lab analyzes the blood. 
  3. Go in to see the doctor. This visit usually doesn’t last too long because I am fortunate enough to always have perfect blood test results. This is also when vitals are taken: blood pressure (like a teenager’s), oxygen (97 up to 100), temperature  (97 to 98), weight (way too high).
  4. After seeing the doctor, we return to the waiting room until we are called for the infusion. 
  5. We are set up in a room, saline drip is started, we wait on the pharmacy to get my drugs ready, and we play some more on our electronics. 
  6. Finally, the drug is ready and the count-down begins. One more hour before we get to go home!
I told my husband today that i am tired of coming to get treatments every 2 weeks. He understood.  I feel like it takes too much of my time. Then, i have to remember,  without this treatment,  i would likely not still be alive. So this day we give every two weeks is like dues. The price I pay to be alive. Small price to pay. Never mind my poor attitude.

Good News

So, i had another CT scan on Monday. With the trial i am on, CT scans have to be done every six weeks. Way more often than i would like. But, at least i don’t have to worry about how i am doing. Some people wait three to six months between scans, even when they are in active treatment. 
There is something called scanxiety. It is the fear cancer patients have about the results of their scans. I never have had it. Not even when i was getting regular chemo and didn’t get so many scans. I am not a worrier. God has control. When He is ready to take me home, my scans will go south. Until then, i expect they will be fine.
Which brings me to … my scans remain fabulous. Dr. Gerber said he wouldn’t pretend everyone has such good results, because they don’t. But, for me, immunotherapy has been, quite literally,  a Godsend.  My tumors don’t go away, unfortunately, but they have neither grown nor spread since the first treatment i had back in July 2013. Before i started on this clinical trial,  i was given very little hope.

Fabulous Doctor

I love my doctor! I am so very fortunate.  Dr. Gerber is the best! I really loved the oncologist i had before, too, though my memories are growing dimmer as time passes on since i last saw him. And, my PCP … oh my gosh … i can’t even say enough good about her. Like i said, i am one extremely lucky lady.
I love UTSW. The entire facility. Based on my personal experiences,  every member of the staff, from the ladies who check us in, to the aides who bring us to our rooms, to the nurses, to the doctors is excellent. Upbeat. Smiling. Friendly. Fabulous. (Anyone have a thesaurus? I think i need a different word … i keep using this one)
Anyway, back to today’s story… 
We go in to see the doctor. He calls me a superstar. It’s because my scans were so good again (the only way they would be better is if the tumors would go away. There are some radiologists who do believe the tumors are only scars, but we don’t know. I personally tend to agree. I don’t feel sick or look sick or act sick…) I know an oncologist loves having a patient like me. I am all but healthy. I am hope.
My wonderful,  personable doctor asks me about my dogs. Anyone who knows me knows how important my dogs are to me. Dr. Gerber is a very busy doctor, but he has taken time to watch and enjoy my agility videos. And, today, he proudly told us about his new dog! He has rescued a 6 year Australian shepherd and he is very obviously quite taken by his Maggie! It was so much fun listening to him telling us how smart she is and what a good catcher she is! 
It leaves me feeling happy and fulfilled to have medical personnel with whom we can chat. Not just about health, but about other interests as well. It sure makes these every 2 week visits a lot more palatable!

Still Living with Cancer!

I haven’t updated my blog in a long time. How does that help provide hope? It doesn’t  … so here i am, hopefully able to provide hope to any of you who have been diagnosed with lung cancer or who have loved ones who have been diagnosed.

I was first diagnosed in October 2012. I have passed the critical one year milestone and will see the 3 year mark, God willing, in just a few more months. Trust me, i thank my Lord every single day for my life. So very many don’t make it even a Year.

I love being alive and on this earth. Here to enjoy my family, friends, and dogs. But, God is good whether He decides to leave me here on earth or bring me home to Him. Talk about a win-win situation! i just can’t lose!

While i am here, i try hard to live every day to the fullest. Fortunately,  i feel good, thanks to the immunotherapy i receive every two weeks. Barring bad news from the CT scans i had today, my tumors have remained stable since i began my immunotherapy clinical trial in 7/2013. Praise God!

So, what does living look like For this stage IV lung cancer survivor?

Dogs, dogs, dogs!

My dogs continue to dominate my life. They bring me such joy and give me so many reasons to want to live.

It is funny to post a snow picture since it is nearly 80 outside on this late March day. But, those two lovers of life get such joy out of the very limited snow we get here in Texas. Cotton also gets great joy in rolling in coyote poop. You can see how nicely she decorated herself in this picture!

The dogs and i meet our friends Linda and Louie (her precious Pom/Eskie mix) nearly every day to walk. We used to walk at least 3 miles every day. Lately,  we have cut that down to around two miles because we come back to a field to practice obedience/agility skills.
Linda and I are fortunate enough to be taking agility lessons with Ed Scharringhausen at Run As One Agility. I have taken lots of classes over the last 6 years. Our classes with Ed make all others pale in comparison. We practice the skills he teaches us all week so that our dogs will be ready to move on when we return to class.
We also take classes with Pam White. Like Ed, she will analyze our runs from trials and is working hard with us to teach us distance and obedience skills. We are so fortunate to have two teachers who put so much into us and our dogs.
So, what’s this agility about which I speak so fondly?
This is Barney and me running a jumpers agility course. The handler directs their dog around a numbered course. Speed and accuracy are required.
Here is another run from the March 2015 Run As One trial:
Here, the dog must navigate a number of different obstacles. Barney and I LOVE to play agility.  As you can see, it takes a great deal of energy.
I have not been able to participate in lessons or trials like i did before i was diagnosed. My stamina is not as good and my pocketbook is much slimmer than it was. However, with the current 2 classes a week and, hopefully,  at least a trial a month, we are coming back!
Cotton doesn’t play agility as much. She’s an awesome agility dog, but she doesn’t always care to participate. Like all sports, it is somewhat expensive. Since my funds are now so limited, i mostly train and trial with Barney, my boy who loves to please and loves to play agility.
As you watch the videos, remember it is a stage IV lung cancer survivor running those courses. Awesome, huh?
Just for fun, i will post a video of Cotton from the December  2014 trial. First, you will see Barney run the course as designed and then you will see Cotton.
Hmmm, the formatting just went south…
Here we go! Formatting restored!

Other Interests

My favorite thing to do is spend time with my dogs and friends who also love dogs. But, especially as the weather warms, i also enjoy container gadening, watching the birds, and photography.

 

 

For the first time, i am trying herb gardening. I love my 3-tiered pot. Just bought two more from Amazon … one for mom and another for me. I am going to put some tomatoes and strawberries in the new pot. Not sure what else… i can’t wait to see how it goes! Fresh tomatoes and strawberries sounds heavenly though, huh?
I haven’t taken many pictures lately nor have i had time to really spend watching my birds. Soon, the hummers will be back … can’t wait!! Will have to find some time to enjoy these activities.
It is also nearly bluebonnet time here in Texas. I LOVE the bluebonnets. I combine 3 loves during the month or so they are out: my dogs, flowers, and photography!  Here’s an example from last year:
Well, Robert is hungry. I need to end this and get him something to eat.
Here’s my final thought : if you have been diagnosed with lung cancer, even late stage lung cancer, do not give up! There is still life to be had. Grab it with gusto!

New Stats released by CDC

http://www.cancer.org/research/cancerfactsstatistics/survivor-facts-figures

The CDC just released its latest statistics for cancer survivors.  A survivor is anyone who has been diagnosed with cancer and is still alive. They may or may not still be undergoing treatments. They may have lived 20 years since diagnosis or 20 minutes.

The news in the report is actually quite good for many cancer survivors. It seems research has finally gotten a handle on lots of cancers and, while it is a huge inconvenience to be told you have cancer (understatement?!), your chances of surviving for at least five years are remarkably good.

For instance,  prostate cancer is the most frequently diagnosed cancer. Over 233,000 men were told they had prostate cancer in 2014. Fortunately,  99% of them will be alive in five years. Caution: 1% don’t make it. Don’t wait around! One of our best friends died of prostate cancer and it wasn’t pretty.

The next most common cancer is breast cancer. Pink anyone? (Is anyone else as tired of the pink campaign as i am??) In 2014, 232,670 men and women (but mostly women) learned they had breast cancer. Probably in large part because of all of the awareness campaigns and money thrown at research, 89% of breast cancer survivors will live five years or more.

The news goes south quickly from there. The third most common cancer is lung cancer. A whopping 224,210 people were told they have lung cancer in 2014. The majority won’t live a year. Only 17% will live to see that magical five year mark. And yet, funding for research into curing this cancer remains dismal.

There is that awful stigma that accompanies a lung cancer diagnosis. It is the smokers’ disease. And, i guess people who smoke or ever smoked deserve to die. And, i guess the thousands who never smoked but get lung cancer deserve it too. i presume this is true because there is so little support for finding cures. I am fighting to change that. So is LUNGevity (lungevity.org).

There are two cancers more deadly than lung cancer. Fortunately, they are not as prevalent. Only 6% of the 46,420 people diagnosed with pancreatic cancer will live 5 years. Liver cancer affected 33,190 in 2014. Only 16% of those people will be alive in 5 years.

These stats are dismal. It is up to us to fight for change. The more of us who lift up our voices, the better. Look at what awareness campaigns have done for breast cancer. It is time to spread the wealth. Other cancers are far more deadly and those diagnosed with them deserve to have hope and the chance to live for 5 or more years.

Please help! If you can’t contribute,  you can still communicate the need to Congress and contributors.

 

Angel doctor

Robert went for a physical yesterday. He saw the doctor who first discovered my cancer, Dr. Donna Casey. I went along, partly because i wanted to hear what was said about his health and partly because I wanted to see Dr Casey again. The last time i had seen her, i had just been told i needed to get into a clinical trial because traditional treatments were not working any longer. That was in July 2013.

I worried a bit about whether she would remember me or not. It had been over a year and a half since i had seen her. I count her my angel doctor,  but she sees many, many patients every week. There was not as much incentive for her to remember me as for me to remember her. I will never forget her! And will forever be in her debt!

Dr. Casey walked into the room, spoke to Robert, and then turned to introduce herself to me. When she saw who was sitting there, she broke into such a big smile. She was so excited. “I know YOU,” she exclaimed.

She started asking a volley of questions and then remembered that Robert was the patient this time, not me. She asked him if he cares if she spent just a few minutes catching up with me before getting to business with him.

While we discussed my treatments and how well they were going,  she had to reach for a tissue. She was so overwhelmed with joy that big alligator tears had formed in her eyes. She kept assuring us that she was crying happy tears.  Of that, there was no doubt.

I have always requested for her to receive copies of my CT scans, which happen every six weeks. I often wondered if she (or her office staff) considered them irrelevant. it is a lot of paperwork to keep up with for a patient you rarely see. I was shocked and humbled when she said she reads every report.  From her conversation,  it was apparent that she does!

All of this might not be so hard to believe if Dr. Casey had treated me for years prior to her discovering the knot on my collarbone that set the whole fight against stage IV cancer in motion. But, that isn’t the case at all. She discovered that knot on my very first visit.

Immediately,  she scheduled me for CT scans … that day. I heard from her just a few days later, with the information that there could be a problem and that her office was going to work with my insurance company to verify that they would pay for a PET scan.

I felt great. I went to see Dr. Casey at the very end of October 2012 primarily because i hadn’t been to the doctor for about 10 years for a physical. The main thing that drove me was weight gain. I kept packing on pounds and couldn’t lose them after going through  menopause and quitting smoking at about the same time. I assumed i had thyroid issues. I never, ever dreamt that i had cancer issues!

I had never heard of a PET scan so i immediately got on Google to see exactly what kind of scan it was. That was my first hint that i might have some kind of cancer. PET scans are used to diagnose cancer cell activity, heart disease, and dementia. I was confident i didn’t have problems with the latter two.

Dr. Casey’s office made the appointment for the PET scan as soon as approval for the test was received. She is amazing in her ability to get things done, so we didn’t have to wait long for the appointment.

By now, i surmised i had some kind of cancer. Since i had watched my dad die very quickly from lung cancer, i was praying it was any kind but lung cancer.

The only time we ever had to wait for what seemed like a lot of time to get a response from Dr. Casey was to hear what the results of the PET scan were. It took a week or so before we got the call that I had cancer … lung cancer. It was a call she hated to make, but she had already done everything for me. We had an appointment with an oncologist the very next morning.

Dr. Casey asked us to come by her office to report after the visit to the oncologist, Dr. Lalan Wilfong. He reported that the cancer was extensive. Because of its location, it was inoperable and radiation wasn’t an option either. Chemo was my only hope. He ordered a biopsy so we would know exactly what kind of lung cancer we were fighting.

By this point in time, we were nearing the Thanksgiving holidays. The date for the biopsy was set for after the holidays. Dr. Casey asked usmif we couldn’t have the biopsy done that day, rather than waiting. “Well, sure, but can we get in to have it done?” It was already nearing noon and, if memory serves me, it was Wednesday before Thanksgiving.

The amazing Dr. Casey pulled her magic strings and in just a few minutes,  we were headed to Presbyterian Hospital to get a biopsy. There was never a moment to sit and worry. She was about action and we were so grateful.

Because she made things happen so quickly, it was only barely over a month between the time i had my first appointment with Dr. Casey and when i was in the chemo room getting my first chemo treatment on December 5, 2012.

By May or June 2013, i had reached the end of the road for traditional chemo. The tumors responded as long as the poison was infused into my veins. But, as soon as treatments ended, the tumors took off again. Dr. Wilfong told us that there was another chemo drug we could try , but he wasn’t optimistic about it. It didn’t work as well and it made patients sicker than the previous drugs i had received.  The idea didn’t appeal to me at all.

He recommended that i consider getting into a clinical trial at the Mary Crowley  Center. I had never heard of that organization, but was willing to see what it offered. However,  i was really hoping to go to UTSW. I had heard good things about them.

When Mary Crowley was not at all responsive, we went back to see my angel doctor, Dr. Casey. We told her what was going on (or not) with Mary Crowley and asked what she thought about us going to UTSW. In minutes, she had called Dr. David Gerber and set us up an appointment.

The rest is history. I signed up to participate in an immunotherapy trial. My first treatment was in July 2013. The results have been awesome. I am the only patient still on the trial, at least at UTSW, but it is working great for me. My tumors have sat stable since i started the trial. Sometimes,  the radiologist classifies them as scars, though Dr Gerber scoffs at that. He said there’s no way to tell from a CT scan.

As long as they sit dormant,  i am okay with them being there. I wish they would go away entirely,  but this is the next best thing!

And, for all of this, i owe Dr. Donna Casey. She is my angel, if ever there was one!

how will you be remembered?

This was posted to WhatNext.com.  i may decide to answer some or all of the questions, possibly  here on my blog. In the meantime,  i want the questions here where i can them again!
How will you be remembered?
I shared with some of you a list of questions my granddaughter emailed to me. You may want to consider answering some of them for your family: 
1. How did your parents meet? 
2. What has been your favorite thing about being a daughter, sister, wife, mother, and grandmother? What was your least favorite thing? 
3. What are you most proud of? 
4. Do you have any regrets? 
5. What are you most scared of? 
6. What’s your favorite song and movie? 
7. What advice do you have for me about life in general? 
8. Who is someone in heaven you wish you could have lunch with? 
9. What’s the most romantic thing papa ever did for you? 
10. What was the hardest thing about marriage? 
11. What do you think of when you see a sunset or the ocean? 
12. Do you ever miss living in Michigan? 
13. What’s your favorite place that you traveled to? 
14. What is your best memory from your childhood? 
15. What’s your greatest wish? 
16. What’s your favorite quote and why? 
17. Who is your favorite person and why?

Living with Lung Cancer

I will never forget learning i had lung cancer or the reaction of my primary care doctor. She felt just horrible that she discovered i had stage IV lung cancer on my very first visit to see her. I have the complete opposite reaction. I praise God for her every day. I would be dead today if she had not noticed that tiny knot on my collarbone.

Dr. Casey held our hands tightly through those early days of battling the cancer. She requested that we come to report to her after every visit with the oncologist. I remember like yesterday sitting in her office and relaying what Dr Wilfong, my first oncologist, had told us. She asked if Robert and/or I needed sleeping pills or anti-depressants and was amazed when we said no. Not then, not ever have we felt the need for drugs to help us face the diagnosis.

From the beginning, we have accepted the diagnosis, gone for treatments,  and continued on with life. Thankfully, my general good health has allowed us to live pretty normal lives most of the time.

I was at my oncologist’s office yesterday. With every treatment,  i have blood tests, a doctor’s visit, and the immunotherapy infusion. I have had a cough since around Thanksgiving which is driving Robert and me crazy. It was preceded by an unexplained (despite a multitude of tests) fever. Anyway, Dr Gerber was wanting to know how significant the cough is and how affected by it I am.

I told him it didn’t prevent my playing agility all of last weekend. He wasn’t quite sure what i was talking about so i showed him the following videos.

 

My dogs and i love the sport of agility so much! I am sure it is apparent from the videos. How many Stage IV lung cancer patients are out running agility courses? I don’t know, but i am beyond thankful that i am able.

Additionally, the dogs and i meet my friend Linda Lelak nearly every day and walk from 2 to 3 miles. The dogs love it and it is good for us! I am grateful for Linda and her Louie. If not for meeting them every day, i probably wouldn’t make myself walk on a regular basis.

I meet my friend Anna every week for lunch and, if there’s anything worth watching, a movie. I love having friends and the time to get together! I spent nearly my whole life so involved with working that i didn’t take time for friends.

The whole purpose of this post is to point out that a cancer diagnosis doesn’t mean that you have to quit living. I know through a support network that i particpate on that too many people become captives to their disease and their fears of germs.

If i let it make me a prisoner, then i might as well just give up and let it take its course. I have cancer. Cancer doesn’t have me.