Cancer is nothing when you have hope!! This site is all about living … and living well … with late-stage cancer. I hope you will journey along with me through the ups and downs of living with lung cancer.
When I was diagnosed with lung cancer, I didn’t know anyone else who was still alive and fighting the disease. I started searching around and ultimately landed on a group where I feel totally at home – it is called WhatNext.
I am going to post two links below that will help you know if you think WhatNext will be a good fit for you. I go to a lot of different lung-cancer related forums, but I spend most of my time on WhatNext. It feels like home to me.
On WhatNext, there are caregivers and loved ones, survivors, and people from the medical field for all kinds of cancer from skin cancer to liver, lung, or lymphoma cancers. Take a look at the information below and please join, if it sounds like a place you’d like to be a part of!
Fighting lung cancer is nearly a full-time job. The time is long since past that we as patients should sit back and just turn over our health to our doctors. The fact of the matter is, we are in a battle for our lives and no one, no one, cares as much as each of us does about our own survival.
Take charge of our own care
Don’t get me wrong. I am not by any means saying that our doctors and medical team don’t care. I believe they do. But, doctors are overworked. Many have so many patients that they just don’t have much time to spend with each one individually. If you go to a community cancer center, chances are very good that your doctor treats a patient with breast cancer, one with prostate cancer, then one with lung cancer, and next one with colorectal cancer….
Everyone needs to try to come if they can ! If we don’t raise awareness, who will? We have to get the word out that funding for lung cancer is not equitable and that people with lungs get lung cancer, not just smokers!!
If you cannot attend, please, please, please write to your legislators. If enough of us demand equitable funding for this national disgrace, it will happen.
Remember, 1 in 17 women and 1 in 16 men will be diagnosed with lung cancer. Which one of your friends or family members will it be? Don’t you hope that there is a treatment, if not a cure, to save them?
Lung cancer affects us all. And it is up to each and every one of us to do our part to see equitable funding for research.
I have lung cancer. My husband has diabetes and heart disease, along with PTSD, thanks to his service in Vietnam years ago. So, while he helps take care of me if my treatments make me sick and weak, I try to help keep him healthy, too.
It is frustrating sometimes. Because he faces multiple issues, he takes handfuls of pills morning and night. Some he has to have twice a day, several have to be cut in half, one has to be removed from one of those packages where each pill is separate and has to be pushed through paper and foil. I don’t know what that package is called, but let me tell you, I hate it. I always lose at least one fingernail to it and my fingers are sore for hours after pushing those stupid pills out of the package.
I’ve tried everything to make it easier to get them out of the foil pack. I stab each little compartment. The black iron pills all have little specks of white on them because the scissors I stab with take some of the black coating off.
Since it is a time-consuming duty to manage his pill-taking, I do six weeks worth at a time. We have stacks of those pill reminder boxes. Let me tell you, it is amazing how quickly six weeks passes and it is time to fill them again.
But, here’s the deal. If I don’t fill the boxes, he just won’t take his pills. Last night we thought about having a bowl of ice cream. (Hmmmm, maybe that’s why I don’t lose any weight!!) He said, “Let me check my blood before we get the ice cream out.” Yikes, it was over 300 … It should have been between 90 and 130.
I was astounded that it was so high. He’d had a grilled cheese sandwich for dinner, but an apple rather than chips. When I worried about what could have caused it to go so high, he said, “I didn’t have my meds today.”
Well, that explains a lot. I asked him, “Are you out of pills?” meaning, are all of the little pill boxes empty. Answer, “yes.” Now, I have no idea when he finished taking the sorted pills or why in the world he didn’t mention to me that he was out. I don’t particularly enjoy spending the hour or so that it takes separating out the pills, but I never fail to do it! After all, his health depends on it.
If he runs out, he will just do without his medications. That’s worrisome to me. It is entirely possible that he will outlive me. So, then what? I am pretty sure the VA isn’t going to spring for those nice little pill packs I see advertised on TV sometimes. (I sure wish they would! Those look really handy!)
How do those of you in a similar boat handle this? And, does anyone have suggestions on how to get into those foil packs things without breaking fingernails and ending up with sore fingers from all of the pushing and fighting you have to do to get the pills out? What is the purpose of making it so difficult anyway?
I have already written about my excitement on Monday when I got to be interviewed for NBC Nightly News. What fun that was!!! But, it was only the beginning of an incredible week!
First Monthly Opdivo Treatment
I had to rush to my treatment appointment after the NBC interview. For nearly five years, I have gotten my treatments every two weeks. My friends, that is a lot of doctor appointments, especially for someone who previously avoided doctors like the plague. On Monday, I started getting a double dose of Opdivo. I will only go for treatments once a month.
I am so excited to have more of my life returned to me. I was a little nervous though about potential side effects. Well, it is Friday night and I have felt fine the entire time since the treatment. Yes!!!
Fun in the Sun (and the Bluebonnets)
On Tuesday, my friend Deanna drove three-plus hours to meet me in Ennis, Texas. Ennis is known for its beautiful patches of bluebonnets, the Texas state flower. Now, if you live in Texas, you live for bluebonnet season! It is a rare Texan that doesn’t head out to the bluebonnets with their kids, their dogs, their grandmas, their husbands or wives for pictures.
Deanna and I had so much fun! She lives in Florida now so I don’t get to see her often. I was blessed that she spent one of her days of vacation in Texas with me. We had a blast driving all through Ennis and Palmer and surrounding communities searching for bluebonnets. I can’t say we found a lot, but we had a lot of fun laughing and talking up a storm!!
It had been a LONG time since I had had my good camera out. I was afraid I wouldn’t remember how to use it, but a lot of it came back to me. It was good to use it again. Unfortunately, I have to remember how to reduce the file size before I can share any of them here with you.
Wednesday was a day of rest, but Thursday found me back at the gym with my friend Linda. We have been trying to work out at least twice a week since the new year began. She is a little better about making the goal plus some than I am. That’s probably why she’s having a little better results than I am, too!
Nevertheless, while I guess it is not “fun,” exactly, to go to the gym, I do enjoy getting together with her. Despite being tired and sore when we leave, I do feel more energized. I can tell I am stronger. Now, if only, I would lose some weight … or at least … some belly.
Thursday afternoon, I listened to a Webinar on advocating to Congress in preparation for the Life and Breath rally in Washington, DC next week. Immediately following that, I participated in a market research call. I always like to do those, both because I make a little spending money and because it is fun to see what potential commercials will be coming out. Oddly, I liked all three commercials I was shown. I typically don’t like or can find ways to improve the ads I’m shown.
Today, I got to have another new experience. I got to participate as a presenter in a Webinar about immunotherapy. It was a lot of fun. I had worried about my Internet service not cooperating, but today it was good. If only the guy who does our yard hadn’t shown up just about the time the Webinar started… I suspect there will be a lot of lawn mowing noises in the background when the Webinar is published.
I also tried making a video to post on WhatNext. For a first try, it wasn’t bad. I got a kick out of the fact that Espy decided that it was the perfect time for some petting, affection, and purring. Like with the yard mowing, timing is everything!
I have a few down days now, which I need. I leave for Washington, DC on Wednesday morning. I have a 6AM flight so we’ll have to be at the airport by 4 AM. It takes about an hour to get there. Maybe I won’t go to bed??? I’m sleepy just thinking about it!
I hope you’ve also had a fun and interesting week!
Have you ever considered participating in a clinical trial? If you haven’t, you are in the majority. In fact, according to Patient Advocate Foundation,“ less than 5 percent of adults diagnosed with cancer each year will get treated through enrollment in a clinical trial.”
I find this stat extremely sad for two reasons. The first is that without participants clinical trials cannot be conducted. If treatments cannot be tested in trials, they will never be approved by the FDA, so they will not be available to cancer patients. A study by Fred Hutchinson Cancer Research Center and the University of Washington found that nearly 20 percent of publicly funded clinical trials fail due to lack of participation.
“Study nature. Love nature. Stay close to nature. It will never fail you.” –Frank Lloyd Wright
Since I have been surviving cancer, I have really, really enjoyed visiting the gardens at the Dallas Arboretum. Whether I go with friends or by myself, I am filled with gratitude and peace while I am there. I consider my enjoyment of the gardens as one of the blessings of having cancer, because unfortunately, before being diagnosed with cancer, I never took the time to go.
I have to begin this blog on a sad note. There have been personal and national tragedies that occurred since I agreed to write a blog about hope and optimism. I lost three friends to cancer in a week’s time … and last night, my city lost five police officers who were gunned down in cold blood while doing their job of overseeing a peaceful protest march. Sometimes, events make it hard to see joy and optimism, but it’s still there. We just have to look a little harder.
Even though I will miss my friends badly, they each outlived their prognosis for stage IV lung cancer by years. The reason they beat the statistics and had years added to their lives after being diagnosed is because of the huge advances being made every single day in new treatment options.
I am an animal lover. I always have been. When I was a little girl, my mother would let us have cats but not dogs. I remember frequently hugging a stuffed poodle and praying that God would turn it into a real dog.
As soon as I was on my own, I got a dog or two or three! I’ve had at least one my entire adult life. Usually, I have had two or more. They complete me. I suspect many of you know exactly what I mean. …More…