Survivor + Caregiver

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.”

pills, pills, pills – sorted

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?

Busy, Fun Week

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.

Working Out

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.

Webinar Presenter

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!

 

Save Your Life With a Clinical Trial…I Did

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.

…more…

originally published 10/6/2016

Hope Springs Eternal

“Study nature. Love nature. Stay close to nature. It will never fail you.” –Frank Lloyd Wright

waterfall

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.

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Originally published March 10, 2016

The Hope that is Research

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.

donna-roseEven 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.

…more…

originally published July 14, 2016

The Power of Owning a Pet

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…

Don’t Give Up: Taking Control of Your Life

donna-pastureI am sitting here staring at a blank sheet of paper, wondering what I have to say to you that will be worth your time reading it. I am no scientist. With the advent of chemo brain, I don’t even really enjoy reading and researching like I once did. So I have no great wisdom to impart.

What I do have to pass along is hope. Such a little word but one that has the ability to change your life. Hope crowds out anxiety and pushes away fear. It fills you with peace and can motivate you.  ….More

 

Happiness is My Normal

I was just looking at my Facebook memories. I love those! I find myself posting things I want to remember to Facebook now so that they will show up in my memories in the future. Am I the only person who does that?  More…

 

A few years ago, I wrote a number of blog posts for Patient Power. I am going to provide links to them on my blog.  Happiness is My Normal was originally posted 4/28/2016

 

 

One More Fun, Fun Opportunity Came My Way

Imagine my surprise when I got a call on Friday from the American Lung Association asking if I would be available to interview with NBC Nightly News about my journey with lung cancer and immunotherapy. Oh my goodness!!! They apologized because it was short notice … and I was thinking, “Who cares??? Thank you, thank you, thank you for the opportunity!!!”

I spoke with the person who was going to be putting the story together on Friday. There was a caveat. The spot might or might not make it. And, we wouldn’t know until Sunday night or Monday morning. And, the interview needed to take place on Monday morning!

Lucky for me, the appointment for my first-ever monthly immunotherapy infusion was set for 3 PM on Monday, the latest it has ever been scheduled. That gave me enough time to do the interview and still make it to my appointment.

I’m not a housekeeper. I wish I was, but I’m just not. I get really tired when I think about pushing around the vacuum cleaner or finding spots for all of the stuff we seem to collect. (Keep in mind, that fatigue lifts immediately if someone offers the opportunity to do something I think is fun…) So, when the call came early Monday morning that the show would go on, I had to scurry, scurry to get at least one room of the house clean enough to be on NBC Nightly News!!

While I was getting ready for the interview, I received an email from another person at NBC News. She wanted to know if I could do a phone interview with her for a piece she was writing for their Web site. Wow! Well, yes!!! I will definitely find the time for that!! It is an advocate’s dream to reach as large an audience as possible with our stories!

setting up the cameras for filming

I had barely hung up the phone when the person arrived to tape my interview for the news. My part was taped at my house, but I was interviewed by people in Washington, DC. That was interesting to do because I couldn’t see their faces so I wasn’t sure if I was answering the questions like they expected or if I had said enough or too much … I was honestly surprised at the clips they chose to use in the story because those were some where I thought I might not be responding as they would have expected.

It takes a long time to get a minute’s worth of video for something!! The guy who did the filming … I’m not sure what his title would be … arrived at 10 AM. He was still uploading footage to NBC at 1:30 PM. I had to tell him we had to leave because we hadn’t had anything to eat yet and I had to be at UTSW for an infusion by 3. It takes an hour to get there, so we were pushed for time!

I so wanted to be home in time to see the NBC Nightly News, but it was not to be. Things moved like molasses at the infusion center. It took longer for my bloodwork to be processed and then it took awhile for my Opdivo to get ready. I was still sitting in the infusion chair when the 5:30 Nightly News came on.

I’ve never done it before and might not have done it if I wasn’t the last person in the infusion center, but I asked if they would change the channel to the news so I could watch. I don’t think they believed me when I said I was going to be on it.

It started out showing me with my dogs. How appropriate!!! My dogs are a big, big part of my life. I thought it was awesome that they included them in the news piece!

One other thing before I have to run and get ready for a fun day photographing bluebonnets with a friend who in Texas from Florida – it has been so much fun hearing from people from all across the US who saw the news report and wrote to me. I have sure enjoyed getting in touch!!

So, without further adieu, here is the news article that Maggie Fox wrote. Embedded in it is a link to the news story.

https://www.nbcnews.com/health/health-news/immunotherapy-transforms-lung-cancer-biggest-cancer-killer-n866356