Saturday, September 23, 2017

A Bump in the Road



On July 12, 2017, I had another routine CT scan. I have them every three months. Nearly every one of them comes back with the good news that I am unremarkable; that all tumors are stable. Until I was diagnosed with lung cancer, I never once thought I would rejoice over being called unremarkable! My, how your perceptions change!


Anyway, I don't worry when I have scans. For one thing, I think worry is wasted effort. It doesn't and won't change anything, but it will rob me of the joy I have today. For another, I have had scan after endless scan that declared me unremarkable. Why would I worry?


Well, this scan was a little different. The radiologist reported, "Interval increase in size of a right supraclavicular node from 1.9 to 2.9 cm on axial image nine of series 2. The thyroid gland is unremarkable." In typical fashion, this didn't worry me in the least, despite the fact that the scan taken in March had also shown some growth of the same tumor.


Usually, I would see the doctor before I get the scan results, but this time was different. It just so happened that I had the results a week or so before my next doctor visit.


I mentioned the growth in passing to my husband, but again, we weren't particularly concerned. There had been a couple of times in the past where the lymph node swelled but then went back to its original size with the next scan. Since I am anything but an alarmist, I just assumed the Opdivo would do its thing or that I had a little infection enlarging the node or anything except that my cancer was growing again.


You're Off the Trial


I was looking forward to my next doctor visit. I was getting infusion #99 of Opdivo (nivolumab). I had been counting down for treatment #100. I don't know if anyone else has ever gotten 100 treatments of immunotherapy, but I suspect there are not many, if any. I had my sights on a centennial party in just two more weeks!!!


When my medical oncologist told me that he was pulling me off of the trial and that there would be no Opdivo infusion that day, I was dumbfounded. I couldn't be concerned about the reason behind being pulled off for my dismay at not making that milestone 100th treatment that I'd had my eyes on for months.


My medical care team all were concerned about me and the fact that my cancer was growing again. All I could think about was that I would not celebrate 100 Opdivo infusions. Tears came to my eyes. But, again, it wasn't because I had new challenges with my cancer, but because I wasn't going to make that milestone. (The mind is a funny thing sometimes, right?)


My doctor assured me that he was going to take care of me and that we would find another treatment. I guess one reason I never worry is that I trust that he will do just that. I'll let him be the one to worry about my treatment plan.


He had already come up with an alternative plan. He recommended that I enter into another trial, this time a Phase One. I spoke with a new researcher and prepared to have a required biopsy to ensure that I had enough PDL-1 proteins in my tumors to qualify for the trial.


Still, I wasn't worried. I wasn't concerned about the biopsy, entering a Phase 1 trial, or about the growing tumor. It was a bump in the road, but we go over lots of bumps and still reach our destinations safe and sound, right?


Soon after I had the biopsy, I received a call from my doctor. For the first time, the reality of what I was facing hit me. "My" spot in the trial had been filled before I could take it. There were no more spots available. My doctor recommended instead that I begin chemotherapy again while we waited for another trial to open up in a few months.


Forks in the Road


For the first time since learning that the tumor was active again, I cried. The chemo that was being recommended to me was Docetaxel. This was the same drug that my first oncologist said he would recommend if I chose not to go into a clinical trial. When telling me about it, he said that it wasn't as effective as the first line treatment and that it had more side effects.


I hadn't tolerated my first line treatment all that well (which is to say that I felt just horrid the first week of treatment with throwing up and terrible fatigue). The idea of going to something worse was definitely not enticing. It took me no time at all to decide to go into a clinical trial instead.


Now, four years later, the same drug is once more being recommended as the preferred line of treatment. No!!!


For four years, I hadn't had a new normal that you hear people talk about so much as I had just kept on living life to the fullest. I never felt like I had a new normal that was worse than my old normal! And, I was in no hurry to return to life on chemo.


I asked myself, again and again, "Will I lose my hair? Will I be as sick as I was before? Will I get neuropathy? Will it even work? Am I willing to go through this again?"


The more I thought about and fretted over the idea of returning to chemo, the more convinced I became that I needed to find an alternative plan. I simply wasn't willing to go back to life as it was when my cancer was first discovered.


Before my next doctor visit, I put my fingers to work ... I looked at clinicaltrial.gov and began looking for another trial for which I might qualify, even if it meant I would have to change doctors and medical facilities. This is an indication of how much I disliked the idea of returning to chemotherapy. I LOVE my doctor AND the facility. To change would be like tearing off my right arm.


I found several opportunities that sounded viable, including one in Houston that combined radiation with gene therapy and immunotherapy. I was interested enough in this study that I wrote to the researcher about the likelihood of my qualifying to participate. It would be a problem to get to it since I live in Dallas, but sometimes we just do what we have to do.


I sent my bio to the Houston researcher on the weekend before my next doctor appointment that was on Monday. When I went to the appointment, I had a list of things to discuss. My doctor was out of town, so my appointment was with my nurse practitioner (NP). I love and trust her as much as my doctor. What's more, I feel like she is not only my care provider but also my friend. I believe I can trust her to tell me if I am going down a path that makes no sense at all.


First on the agenda was the fact that I had decided against chemo. That option was just not going to fly with me. Quality of life is far more important to me than quantity. I wasn't willing to suffer through the side effects of Docetaxel in hopes of slowing down my tumor.


So, with that off of the table, where should we go?


First, my NP assured me that genetic testing of my tumors had previously been done. I didn't have any mutations that would call for targeted therapies.


Well then, I asked, why couldn't we just radiate the tumor? I understood that I wasn't a candidate for radiation nearly five years earlier because of the location of the tumors. But, now, I had only one tumor, now called Wayward Tumor, that was causing problems. It wasn't even in my lungs. It was easily accessible for radiation, in my mind, up near my collarbone.


With limited knowledge, but lots of bravado, I decided that I wanted SBRT radiation to the spot. Let's just annihilate the silly, troublesome tumor and be done with it. Stereotactic Body Radiation Therapy (SBRT) requires only a few, high-dose radiation treatments to the tumor. Sounds like a great plan, right? Sure beats traditional radiation, I thought. Traditional radiation treatment requires lots and lots of trips back and forth to the hospital. I live 45 minutes or so away from my treatment facility. I didn't want to make lots of trips.


After an hour or more of discussion, it was clear to my NP that I would not rest easy with any treatment decisions unless I had discussed radiation options with a radiation oncologist. She agreed to make a referral.


And so, a new learning experience was about to begin! Wayward Tumor was about to meet its match. But, not exactly the way I planned it.


(As a side note, my email to the Houston hospital bounced back to me. The researcher's inbox was full. After my discussion with my NP, I decided not to make contact with them at least until after I had met with the radiation oncologist here in Dallas.)


To be continued!!! I have lots more to tell and even some pictures to share in future posts.
































Wednesday, September 20, 2017

Advocate for Yourself!!

As anyone who knows me knows, I am a big proponent of clinical trials. But, recent events make this post one that I feel needs to be written.

Bud (in the white shirt) - just a month or so before he passed
away. Friends and family met for lunch.
On August 30, 2017, my friend Bud Bivens passed away from stage 4 non-small cell lung cancer. He leaves behind a bevy of great friends and loving family members. He will be sorely missed.

Bud's cancer was not diagnosed until late June of 2017. Only a week or so before, he had celebrated his 68th birthday. Bud was active. He loved to bowl and to do other activities that kept him moving.

He felt good and seemed strong, but he had developed a persistent cough. He tried to get in to see his primary care physician  (PCP), but she was too busy to make time to see him. Her office suggested that he go to Urgent Care if his cough persisted. It did.

At Urgent Care, an x-ray was immediately ordered and Bud was told to get to ER right away. It was evident that he had late stage lung cancer and needed more help than could be provided by Urgent Care.

Bud was admitted to the hospital. A series of scans and tests were run. Because he was on blood thinnners, the biopsy was delayed for a week. Once the biopsy was done, Bud requested that they test the tissue for genetic mutations.

Treatment could depend on what was found through the mutation testing. If he had a high PDL-1 count, immunotherapy might be a good option. If he had EGFR, ALK, KRAS or other mutations, targeted therapy drugs could be more effective and less harsh than traditional chemotherapy.

Unfortunately, mutation testing takes a couple of weeks. However, while medical professionals waited on the results, Bud was sent to radiation to have several small tumors eradicated from his brain, using a gamma knife.

Clinical Trial ... or Not ...


I had had such phenomenal results from the clinical trial I had joined 4 years ago that we all were excited and hopeful that Bud could also get into a trial. I did and still do believe that patients get the latest and greatest that research has to offer when participating in a trial.

I also believe that the level of care and attention a patient gets when in a trial is magnified. I loved being in the trial I was in and would readily join another.

However, when waiting on a trial allows your fast-spreading cancer to continue sprialing out of control, a trial is not the best option. Your best option is to begin treatment NOW.

Bud's treatment was delayed six weeks while all of the trial requirements were being met, such as being cleared by his cardiologist,  waiting on results from the mutation testing, and allowing his body to rid itself of blood thinners, etc.

Those of us who knew and loved Bud were devastated to watch him go from a virile man to one dependent on oxygen in just a matter of a few weeks. He could barely speak because his cough had gotten so bad. His movements were limited because his oxygen levels tanked with the slightest amount of exertion. It was clear to us that Bud was going downhill way too fast.

And, yet, the doctors drug their feet. Weeks passed with nothing being done. Weeks that saw Bud's health decline more and more.

Finally, a trip to the emergency room resulted in Bud once again being admitted into the hospital. He had still been given nothing to combat his cancer. His doctor was still waiting around to try to get him into a clinical trial.

Some of us worried that this trip to the hospital was the last one Bud would take. His health was continuing to decline. Day by day, even those with him every day could see that he was failing. He was losing weight, couldn't eat, and the cough was relentless.

A forthright doctor told Bud that if they couldn't get his oxygen levels up to the high 80s, or preferably, into the 90s, they would have to intubate. Once intubated, the expectation was that it would fall to his family to decide whether and when to pull the plug on their dad's life.

The idea of putting his family through that terrified Bud. He never showed much fear in the face of his disease, but making his family face such decisions was the one thing that I saw bring tears to his eyes.

Chemotherapy ... Treatment at long last


While in ICU, the doctors decided Bud might have pneumonia hiding behind his tumors so they started heavy duty antibiotics. The antibiotics meant that Bud was no longer going to be eligible for the clinical trial so, at long last, chemotherapy was begun.

Bud rallied. Whether the chemo or antibiotics or both worked, we don't know. But, Bud improved enough so that he was able to go back home. We were all elated. There was still hope.

Unfortunately,  he wasn't home for long. His oxygen levels tanked. Even a level of 70 was a dream. Somehow, he managed to survive it dropping down into the 40s. When, despite valiant efforts, it couldn't be brought up to a sustainable level,  Bud made his last trip to ER and, subsequently, to ICU.

He refused intubation. He was given morphine in increasing amounts. He passed away peacefully on August 30, 2017, surrounded by his loved ones. Bud will be greatly missed by many of us.

His brief battle against lung cancer makes me ready to push even harder to make people aware. First, if you have shortness of breath or a persistent cough, get it checked out. Sooner rather than later.

And, the point of this blog entry ... we will never know if Bud's life could have been extended or saved if doctors hadn't drug their feet. It seems his oncologist was more interested in getting him into a clinical trial than into treating him. It seems he was viewed more as a potential subject than as a man whose cancer was quickly ravishing his body.

I hope through this blog entry readers can see that those who cared about Bud could see him declining day by day, even hour by hour. And yet, his doctor told him that she was shocked by how aggressive his cancer was. She had no idea that it was taking over his lungs so quickly.

Was she blinded to it because all she saw was a subject for her clinical trial? I hope not, but I am fearful that's the case.

If you are a patient or a caregiver, please. Do not be patient. Do not rely on your doctor or medical team to know or do what is best. You and your family and friends may not be trained in medicine, but may see things in a more realistic way. If things don't seem right or don't seem to be moving fast enough or in the right direction, make waves. Make BIG waves. If one doesn't listen, move to the next.

Again, none of us know if Bud's life could have been extended if they would have started treatment within a week or two instead of after 6 weeks. But,  I will always believe more, much more, could have been done for him.

His experiences have reiterated to me that I care more about what happens to me than doctors do. I know how I feel and I  know if something doesn't seem right. And, I won't sit idly by while doctors wait for who knows what.

I hope you won't either.

RIP, Bud. You are missed.




Wednesday, June 14, 2017

Still here!!

Despite best laid plans, it has been a long time since I wrote a post. It isn't because i have been too ill that I haven't been here. I have been too busy living life! Praise God for miracles ... and thanks to modern day medicine.

I will be getting Opdivo infusion #97 on Monday. Wow!!! It won't be too long before we get to throw a centennial celebration! I wish i was better at planning parties, because that 100th infusion of immunotherapy will certainly be worthy of celebration!

I am writing this on my tablet. Unfortunately,  i don't think i have access to many of my photos. The reality is that i haven't really taken lots of pictures lately. Occasionally,  i pull out my phone to capture a memory, but i haven't taken my good camera out in search of subjects of interest in quite some time. I need to rectify that one of these days!

Today, we celebrate the anniversary of Divo and Espy, the twin kitties, coming to live with us. They have been the perfect additions to our family. Cotton tries to terrorize them on occasion, but mostly, they ignore her. Divo is named for the drug that is keeping me alive. Espy is short for Esperanza,  Spanish for Hope. I usually have trouble thinking of names for my 4-legged family members, but these two were easy!

Speaking of 4-legged family members, Cotton, an 8-year-old American Eskimo Dog, and Barney, my 7-year-old Sheltie (Shetland Sheep Dog), continue to add joy to my life. The three of us play dog agility together. I credit them with helping keep me alive. They have ensured that i get a lot of exercise and that i have much to focus on besides the fact that I have cancer. They are not just my teammates, by any means, but it has been incredible playing a sport with them.

As for my health, i have suffered a couple of set backs in recent months. At my last scan, i developed a severe allergy to the iodine contrast they give me. I thought i was having some kind of strange and misplaced panic attack as I could not catch my breath. I was really embarrassed that i would be having such a reaction after having many, many scans since my cancer was diagnosed. So, i didn't tell anyone how I was feeling.

Fortunately,  when i went to the cancer clinic to have my port deaccessed, it was immediately evident that i was having problems. The chemo nurse quickly diagnosed it as an allergic reaction and got benedryl and lots of liquids into me right away.

It was touch and go for an hour or so (i didn't realize until later how deadly an allergic reaction can be), but i was much better after several hours. I won't be getting the iodine contrast in the future unless absolutely necessary. Now that we know i have severe reactions to it these days, i will be pre- and post-medicated before i am ever given the solution again. Whew!! That was pretty scary. Thankfully, it was scarier after i was all better and was reading about it than it was when i was actually going through. I had complete faith that the care team had everything under control, and they did!

More recently, my blood test results showed i might have developed moderate kidney disease. I was really scared by those results because i would have to quit Opdivo if one of my organs started failing. I really thought I might have come to the end of the race after beating the odds for the last 4-plus years.

My oncologist told me i needed to increase my electrolytes before my next appointment. We needed to see if my kidneys could be rehydrated and begin functioning properly again. (I never realized they were not functioning as they should. There was no pain, blood, lack of urine production ... the only indicators were screwed up levels of creatinine, LD, and eGFR, as shown by my blood tests.)

Several of my friends and my son bounced into action. They know i am a procrastinator. To combat that, they brought me foods that would help raise electrolytes, all kinds of drinks to try, and provided unbelievable support (sometimes in the form of mother-henning me to ensure I was drinking enough to get those kidneys hydrated). I can't begin to say how grateful I am to have friends and family who really do care and go to great lengths to try to make sure i stay among the living.

My care team, my friends and family, and I were holding our breath as we waited on the blood test results at my next visit (i go every 2 weeks). I was a little nervous since we had had a 3-day Memorial Day agility trial where i had played hard, worked hard, and done plenty of sweating. Had I drunk enough water and Gatorade to keep my kidneys happy?

My oncologist, nurse practitioner, researcher, and I had a small celebration when the results were in. When you go to the doctor every two weeks for four years, the staff become friends. We were all elated to see that my creatinine level was just above what is considered normal. Close enough ... and going DOWN, not continuing up!! Whew!!!

Fortunately for me, my friends won't let me rest on those good results and return to life as it was before. I am still being brought different sports drinks to try and i am strongly encouraged to keep drinking them. I am one lucky girl to have such awesome and caring friends.

So, despite a couple of scares, my life is full. It mostly revolves around activities with my dogs and my agility friends, but i have recently been fortunate enough to be interviewed for several articles that will be coming out soon about lung cancer and immunotherapy. In August, i get to return to Chicago for a summit on immunotherapy. I am looking forward to that! I had a fabulous time when i was there last time. This time, i will have an opportunity to visit with a friend who lives there before i go to the Summit. I am looking forward to both very much.

So, here's to living life!!!  Cancer is part of it, but certainly not all of it.

Saturday, April 16, 2016

Just a Line on Paper

I participate on several different cancer-related forums. I don't go seeking support for myself, but I do try to add hope, comfort and/or information to others who go the sites, especially for those who are newly diagnosed with cancer. I well remember how mind-boggling it was to get the news that I had cancer. If I can make it even a little easier on others facing that news, then I want to do so.

I find that, even though I don't know most of the people personally who participate on the boards, I care for many of them deeply. When one gets bad test results or is having a difficult time with treatments, it hurts me. If we learn that a regular contributor has passed away, I shed tears. And, on the flip side, when someone posts that they are now NED (no evidence of disease) or got into a coveted clinical trial or had scans showing stable tumors, my heart sings. It brightens my day.

Chances are good that I will never meet the vast majority of people who participate on the forums. We live all over the world. Many of us are as different as night and day. Our one commonality is that we (or a loved one) have cancer.

Someone wrote today that she was nothing more than "a line of type" to me. Indeed, we have little in common and she is definitely not one of my favorite forum participants. I find her a know-it-all and a very rude individual who says (types) hurtful comments to people nearly every single day. I think she's trying to be funny most of the time. But, that's not how it comes across to many of us.

I've often thought that she has very thick skin because people often disagree with her. Or, worse yet, they just ignore her.  That's what I usually try to do.

But, this blog entry is not about her ... it is about the comment she made about just being "a line of type." I disagree vehemently with that statement.

We may or may not know one another's names, but we actually know a lot about those of us who participate regularly. We know which forum members share similar values and which ones don't. We know who is in remission and who is in the fight of their lives. We know many inner thoughts that would likely not be shared if we were face to face. It feels safe to share what we really think and feel when we can't see one another and we are known by a screen name only.

I might not know you physically, but I know you emotionally and psychologically. And, in my opinion, that is who you are. Not what you look like on the outside, but who you are on the inside, when you think nobody knows you.

I have a very, very good friend. We have been friends since 1999. We have gone through her getting a divorce, our kids getting married, having babies, and in some cases, getting divorced. We've gone through my cancer diagnosis and treatment. I know things about her and her family that her very best friend doesn't know. Because I am safe. We have never met. We have never spoken on the phone. And yet, if I really needed her, I feel that I could go to her and she would be there for me. I know I would be for her. In fact, we HAVE been there for one another. We've shared joys, tears, sorrows, and laughter. We've shared life with one another.

So, there is great fallacy when one thinks they are but "a line of type." You're kidding yourself if you think the people on the other end of your posts don't know who you are. If that were true, online support groups and even Facebook and other social media would not work.

In my opinion, this is important to remember. Adults bully the same as children do. And, it is wrong, regardless of who does it. There is a live person reading comments made on forums or other social media. Some of them are in very vulnerable places, especially if they were recently diagnosed with cancer or how just learned that their cancer has returned or that it is no longer treatable.

Read and reread before posting something. Think about what you wrote. Will it help the person to whom it was written? Will they have to wonder what you meant by  what you said?

None of us is just "a line of type." Don't treat one another as if that was the case.




Wednesday, April 13, 2016

It is Bluebonnet Time in Texas

Spring is always a hopeful time. The grass turns green, flowers begin blooming,  and the trees bud. Bees begin spreading pollen. And, yuck, around here, the mosquitoes show up, too. We have some monsters out there this year.

I don't always look forward to spring. The reason isn't because I don't love the season itself, because I do. But I hate what it foreshadows. Summer. Summer in Dallas, TX can be brutal. I dread it every year, from the time it leaves until it comes again! We have had a lot of unseasonably "warm" weather already this year. I hope and pray it is not preparing us for months of 100+ degree days.

But, one thing I do always anticipate about spring is bluebonnet time! Bluebonnets around here are mostly the Lupinus texensis, though there are many species of the genus Lupinus and many of them may be found growing in Texas during March and April.



Bluebonnets are the State flower of Texas. We Texans take them very seriously!!! There are myths that are perpetuated annually that it is against the law to even pick one of the lovely blue flowers.

It is a Texas tradition to take the kids (two- and four-legged) out to the fields where the lovely blue flowers grow wild for pictures. You will usually find me out there when the first flower pops up and many more times until they disappear for another year.

April 2013


I came across some pictures that my husband took of my two dogs and me out in the bluebonnets back in March 2013. I had recently been diagnosed with stage IV lung cancer and my prognosis was very bad. When we went to the bluebonnet patch, neither of us had much hope that I would be alive to see another bluebonnet season.

Cotton was exploring while Barney was doing what Mom asked!

These two dogs have brought me such great joy - then and now!

Let's get a "perfect" picture!

This is a picture of pure happiness!

I am sad to say that the field where these bluebonnets were no longer turns blue in March and April. I am not sure why. I do know that it is getting harder and harder to find nice spots to take pictures. Maybe the property owners don't want the liability. These fields of blue draw hundreds of people every year.

Ladybird Johnson, as part of the Highway Beautification Act, encouraged the planting of bluebonnets and other native plants along Texas highways after she left the White House. As you drive from Dallas to Austin or Houston, you'll see many bluebonnets alongside the highway. But, these places are not safe enough for me to take my dogs for pictures. They are too likely to break their stays and take a run in the open fields. And, they have no sense that cars are dangerous... (Ha! Cars are just a way to take them from one fun activity to the next!!)

April 2016

The first place we went was to a school stadium parking lot. The bluebonnets seemed to have popped up there before they became prolific elsewhere. So, I managed to get early bluebonnet pictures, but nothing I was proud of. I thought I waited to go until the sun was in a spot where it wouldn't cause shadows and squinty eyes, but I was wrong! Way wrong.

The patches were relatively small, too. But, the good news is that they were behind a fence. I was really glad, because Cotton almost always takes off in a mad dash the opposite direction as where I am. And, Barney always follows her. Both of them run at full speed.

Barney can't keep his eyes open - sun is too bright.

Sun in your eyes, Cotton?!

See what I mean about them taking off and running? They ran to the far end of the fence.
I held my breath, praying that there wasn't a hole where they could get out.

This patch wasn't desirable, except for the fact that it had a fence and a few blue flowers. I wasn't sure I was going to capture "the bluebonnet picture of the season" here, though.

I was fortunate that a friend shared where she goes to take her bluebonnet pictures. I think it is another Texas tradition to keep mum about the really beautiful patches you find. That keeps them really nice because rude people don't trample all of the flowers down.

You wouldn't believe how much disregard people have for these beautiful flower patches. They bring blankets that they lay down right in the middle of a patch. Or they bring wagons or they encourage their children to run with abandon through the fields. It is true that it makes a lovely picture for them. But, it destroys large patches of flowers for all of those who come behind them for pictures. It also kills the flowers so they are not able to go to seed. Next year, the patch will be smaller because fewer flowers left behind their seeds for next year.

But, this story is about finding beautiful spots where I can take pictures of my dogs with the bluebonnets.

Cotton, Barney and I headed out to the park where we were told the bluebonnets were out. The park is somewhat out of the way and apparently not well known. Both of these attributes are good!

On our first trip, I managed once more to go when the sun was in the dogs' eyes. Not only that, because we have been homebodies for the last few weeks, they were very excited to be out and about. Posing for picture after picture is not their idea of a good time! Barney was very cooperative, but Cotton was on a tear. She just wanted to go, go, go and have fun.



I admit I was pretty frustrated with the whole trip except that I now knew a nice place to go to take the dogs for pictures. And, I vowed I would get up early and take them out before the sun was going to be a problem.

So, we headed out the next day, this time around 7:30 AM. Turns out we didn't need to leave so early as it was cloudy all day, but it got me out of bed and on the road so it's all good!

Never one to stay on the beaten path, my dogs and I found some nearly undisturbed patches of blue for pictures!! We had a great day. Cotton was cooperative and so was Barney. We were away from where other people might walk by (my dogs tend to be reactive toward other dogs and want to run and greet other people).

running and running and running ... they love it!

This dog nearly always has a big smile on her face. Happiest dog ever!


Both dogs must have gotten a little bored with our picture taking. Both did some yawning!




Besides bluebonnets, we saw other pretty flowers. I am fairly non-discriminatory when it comes to enjoying wildflowers (and even not-wildflowers (cultivated flowers, I guess they're called)!









I recently saw someone else's video of a visit to the Arboretum. It included stills and video and I really liked it a lot. I remembered to take a couple of videos while we were taking pictures on Saturday morning so that I could play with putting together my own "integrated" video. It is not fabulous, I know, but here's my first attempt (wish the wind had been blowing the bluebonnets ... but it was a surprisingly still day) ...






Sunday, April 10, 2016

I have cancer, Cancer doesn't have me





I wrote the following in response to an article we were discussing on WhatNext. If you want to read the article, you can find it at http://www.curetoday.com/community/bonnie-annis/2016/04/as-a-cancer-survivor-making-the-choice-to-get-busy-living. It is titled, "As a Cancer Survivor, Making the Choice to Get Busy Living"




I have been interviewed several times lately and the interviewer always wants to know how it felt to be told I had stage IV lung cancer with an estimated 4 months to live. I always feel like my answer disappoints them on some level.


My husband and I discussed how we were going to face this as we were driving to my mom's house to break the cancer news. We both agreed that we were going to make it a "no big deal" thing to her.


That's what we did. And, that's how we lived. I never gave up life. There were times during chemo when I gave up a few days while fighting the worst of the side effects, but those days were limited.


My oncologist could not believe that I wanted to know if I could keep playing agility with my dogs, but I never quit. I might have missed a class here or there, but we didn't leave the sport.


Most of my local friends have totally forgotten that I have stage IV lung cancer. I was at church the other day with a friend who told me another cancer survivor was joining us. She gently explained that I might want to curb some of my exuberance for life because this girl has a late stage cancer...


She was so dumbfounded when I reminded her that I do too!!!


As it turns out the girl who joined us is a lot like me. She is a runner and refused to give up her running. The hospital has been attaching all sorts of electrodes to her and a team follows her while she runs. They are monitoring how the exercise impacts her and her cancer. I have not gotten an update on her, but she told us that she expected to be getting a NED diagnosis the following week!!!


I feel like I alienate some people who are fighting cancer (or however a person wants to term it) because I have chosen to live life. I told the interviewer that cancer has made me nearly frantic to keep my calendar full of activities that I love to do. Down days are something I try not to have.


Because I stay so busy doing things I love to do, I forget for long periods of time that I have cancer. I have cancer, it doesn't have me. I hope it never will.

Sunday, April 3, 2016

The Fraternity No One Wants to Join

Last week, I attended a regional HOPE Summit that was put on by the LUNGevity Foundation. My (nearly) 86-year-old mom attended with me. After spending a full day of learning and camaraderie with all of us lung cancer survivors and caregivers, Mom made a comment that resonated with me. She said, "It's almost like you are all in a fraternity or a sorority."

Yes. That is so true. We share a commonality that no one wanted and no one asked for and certainly no one sought. And, yet, that monster no one wanted, lung cancer, has brought us together in a way nothing else ever could. And, I think without exception, we are all thrilled to know one another.

Have you thought of that benefit? Do you go places where you meet others with a similar diagnosis?

In so many ways, it takes another person who has been diagnosed with cancer to understand what it is like. People can imagine or think they know, but only someone who has heard those awful words actually, truly know.

I think meeting other people who are surviving cancer helps bring hope to all of us. Maybe it gives just the push someone needs to climb out of depression and to give life another chance. For sure, it means that we can exchange war stories and know that the person hearing them knows just exactly what we are saying, even if our chemo brains make us forget the right words sometimes.

Living Life 


Once we hear those words, "You have cancer," we all seem to react differently. I personally took on living with a vengeance. People laugh when they see my calendar. I keep it full. If there is an open day, I generally come up with something to fill it up. I want to enjoy every single minute of every single day. And, for the most part, I am hugely successful in that endeavor. If I am not laughing and smiling and having fun, I just might be asleep!

I have many friends who accepted the challenge of cancer and vowed to give it a run for its money!! They are strong warriors and usually spend a lot of time advocating on behalf of themselves and everyone else who has been diagnosed with cancer. They are using the time they have to make a difference in their lives, in the lives of other cancer patients, in the lives of everyone who comes into contact with them.

Thank God for these people! I think a lot of us want to give back when our lives have been extended beyond expectations. I wasn't supposed to live more than 4 months. Wow! I have a story of hope to tell and tell it I will!

Or not...


I know other people who learn they have cancer and it seems like a dark cloud descends on them. They lose their energy and their zest for life. It appears that all they think about is their cancer. Sometimes, these are people who are diagnosed with early stage and treatable cancer. Long after their cancer has been obliterated, they are still giving it power over them. They moan, groan and complain because cancer came into their lives. They feel sorry for themselves and shorten their lives by worrying constantly about the fact that they had cancer ... and that it might come back someday.

I always wonder, why? Why give cancer so much power? I get it if you are so sick from chemo and/or radiation or surgery that you can't continue living life. I've been there. I lost days of my life when I was getting chemo. I could do nothing besides curl up on the bed, completely miserable and wondering if I really wanted to continue. But, those days would pass in a bit and once more, life was worth living ... and live it I did!

My own personal perspective is that people who give up the will to live life, who concentrate more on what their new normal means (and what they can no longer do) than on trying to make the best of the time they have, are losing to cancer long before it robs them of life.

Here's the deal. When we dwell on something, it grows bigger and bigger and bigger. It takes on a life of its own. It can begin to consume you. If you're dwelling on living life, then joy and passion are what consume you. But if you concentrate on what you lost, no matter how small or significant that might be, you give up your peace and trade it for worry, fear, sadness, and/or anger ... or maybe all of those.

Blessings

So, I choose to keep my focus on the blessings of cancer. Yes, the blessings of cancer. I joined a fraternity no one wants to be a part of ... but now that I am a member, I am not so sure I would ever want to leave again. What??? Am I crazy????

Well ... maybe. But, here are some of the things that have happened to me as a direct result of having stage IV (yep, terminal) lung cancer:


  1. As I noted already, I have made friends that I would have never met if it were not for the fact that I have lung cancer. I wouldn't trade knowing them, not even if it meant I could somehow give away my cancer diagnosis.
  2. I am much stronger than I realized I was. It took cancer to teach me just how much strength I have. Some disease is not going to overpower my thoughts, even if it does try to overpower my body. 
  3. I have so much more joy than before I was diagnosed with cancer. I guess when I came face to face with the reality that my life could be over in a matter of months, I began to appreciate what's really important in life. People, moments, memories, time. God's handiwork. Every single day, every single hour of every single day, I am thankful for the fact that I am alive and enjoying what God has given me. 
  4. One thing cancer has done is rob me of patience. I have no patience with complainers or with people who can't look past their circumstances to find happiness. I remove myself from their midst and that has helped make my life much happier!
  5. Not only have I made friends with others who share a cancer diagnosis, I learned who my true friends really are: the ones who didn't just keep on living life without giving me a second thought, but the ones who I know would be there for me the moment I needed them to be. Sadly, for me and for most people who are diagnosed with cancer, I learned that many of the people I thought were good friends really are not. But, the flip side is that I learned who my real friends are. And, that's a very important lesson.
  6. I learned how to enjoy life. I never was much of a worrier. I sure am not now. Worry is a time thief. I have no time to share with worry. 
  7. Chemo brain has even lent a benefit. Thoughts don't get a very tight handle in my brain. Sometimes, even most of the time, that can be frustrating. But only momentarily. I don't hold onto hurts or wrongs ... I don't just forgive them, I FORGET them. Totally. So, they don't interfere with my pursuit of happiness :)  I don't try to forget them, they just don't stick in my mind! 

Challenge

My challenge to anyone who reads this is for you to begin living life like you might not still be here tomorrow. Because, the truth is, you might not be. A cancer diagnosis brings that fact to the forefront of your mind. But, NONE of us is promised tomorrow (or even the next minute). We need to start living like today might be our last day here. 

What would be important to you if that was the case? Would you still be mad that someone cut you off in the grocery store line or on the highway? Would which new dress to buy be foremost on your mind or perhaps spending time with loved ones would supersede. 

Just think about it. Most of what frustrates us or makes us mad is really small in the grand scheme of this thing we call life. We're giving up blessings every single time we let something rob us of our happiness. Right? Or do you disagree?