Mom - "Failed overnight test. Have to go back on oxygen at night. Have to take sleep apnea test. Have to wear a mask to sleep in. Claustrophobic. Devastated. Damnation."
Me - "Huh? What's up?"
Mom - "They say I stopped breathing a couple of times last night."
Me - "? And that is an issue why?"
Mom - "I STOPPED BREATHING! I could die in my sleep."
Feeling sad. My mom, who lives in Kingman, AZ, was rushed to the emergency room last Wednesday with extreme breathing difficulties. She is 80, and a lifelong smoker. The doctors discovered by X-Ray and CT scan that she has a mass in one lung that has spread and is wrapped around her trachea, and that her lung is collapsed. She also has suspicious spots on her liver. She was on blood thinners, and had to wait four days till yesterday for biopsies.
Today is the two-year anniversary of the completion of my treatment! (Stage 4 T1N2c BOT for you newbies out there) Two amazing wonderful years that I have been able to spend with my two beautiful daughters and my loving husband. If I didn't have another day, it still would have been so totally worth the effort! I am so very very grateful to be here!
Have a wonderful day, everyone!
So here is your dose of Saturday morning philosophy. I was really puzzled by your Facebook post of a while back, where you shared a colorful little poster that says "...when I say I'm okay I want someone to hug me and say "I know you're not..."" "
I have this thing, I call it my "game face." When life really, really sucks, sometimes you can't do anything more than just haul your sorry ass out of bed, put your game face on, and get out there and take it in the teeth. Hit it with your best shot.
And, when I'm hitting it with all I've got, the last damned thing I want is for someone to stick their face in mine and say "wow, you really aren't okay..." or even "gee, you look really sick..."
Welcome to the boards. Ask whatever questions you need, and someone with relevant experience will answer. I am a 55-year old female, married just about as long as you, with two college-age daughters. I had HPV-positive SCC base of tongue - stage 4 with mets to lymph nodes on both sides of my neck, so treatment got a little intense for me. I'm left with no spit, no snot, no tears, no butt, and still trying to ramp back up at work.
I understand that 'survivor's guilt' can be a problem for a lot of folks. It's not a problem that I had. I feel very much like I dodged a bullet, and I'm very grateful. I am trying to adapt to the 'new normal' that they say comes after treatment, but as another has so eloquently stated here 'I wish that new normal would quit changing on me.'
I am devastated and bereft. My dearest sweet Rosie bulldog has passed away. She was my daughter Annie's dog. Annie acquired her days before leaving for college and presented her to the family. Annie was always Rosie's favorite, but Rosie's two greatest tasks were on my behalf. Rosie's impetuous and demanding personality sustained me as I sent my (similarly behaving) eldest daughter off to college. Rosie's warm lap snuggles comforted me through eight weeks of radiation and chemotherapy and then through recovery. I would curl up in the big recliner chair and tuck my legs up and Rosie would crawl into the space behind my legs and rest her head on my bent knees. We could sit like that for hours, and when I got chilly, I'd cover the two of us with a blanket.
Hard to explain. I'm happier. I'm grateful. I'm more mindful. I enjoy everything, especially breathing. I am having a WONDERFUL summer.
I was a very happy little kid. That happiness seemed to dissipate as I got older. Well, now that little bubble of joy that used to hang out somewhere close to my heart is back again. I didn't realize how much I'd missed it.
Has anyone else here noticed... you can look someone right in the eyes, and sometimes you can tell that they are a survivor too?
Or, perhaps this has affected my brain in subtle ways I don't recognize.
A Message to a Total Stranger.
Son, I like the way you look. You looked so handsome sitting up there on the back of that big white mule in that red shirt at Bishop Mule Days. The two of you have a great rapport; that mule would do anything for you. Up to and including being painted blue, wearing a long curly blonde wig and running headlong into a cluster of flapping ribbons. When the two of you galloped around the arena Saturday night, carrying the American flag, it was an impressive sight. I could hear that flag snapping in the wind of your going from the top row of the grandstand.
From your Facebook photo album, it looks like you are kind of short, and still a little bit overweight. But you have a merry smile, a cute dog and a kind heart. I understand you’ve lost over a hundred pounds in the last year. You’ve got persistence. And, anyone who names their mule “White Trash” just has to have a sense of humor.
I am a caretaker like you. During the treatment phase there is a lot for us to do. There is radiation every day, chemo on a regular basis, visits with the doctors. When treatment ends, I do not recall any doctor going out on a limb and saying "got it all". What a I do remember is an anxiety of not having anything to do, or the worry that there was nothing "active" going on to kill the cancer. You may have read on other posts about the "cooking" stage, where the radiation and the chemo are still doing their thing fighting the cancer.
I remember it being a tremendous emotional swing, from active (I have something to do that is helpful) to waiting. Waiting for healing to begin. Wondering if all the cancer is dead. Then you realize how much the activity of treatment helped you manage your feelings. When that activity is gone...wham, there you both are, holding on, hoping for the best, waiting for each day to be better than the one before, measuring progress in weekly increments, because that is the only way you can really see the difference.
OK, so I’m a Head/Neck cancer survivor. I had base of tongue cancer, Stage 4, just like Michael Douglas. Two surgeries, then concurrent chemo and radiation for eight weeks straight. I’ve got side effects up the wazoo. And I’m going have these for the rest of my life. I’ve got permanent edema and a throat like a bullfrog. I’ve got a compromised swallower. I’ve got vocal cord damage. I’ve got NO saliva. Never will again. I can’t eat for ****. No meats. No sweets. Breads are a *****. Alcohol is out of the question because it burns going down. Everything else is so dry I can’t choke it down without a mouthful of water. I don’t eat out, for the most part. Takes way too long. Too difficult. Too embarrassing. Even the best waitresses never bring enough water. Food chunks stick to my teeth. And to my tongue. And to the inside of my mouth. And all over the outside of my lips. I have to floss, brush, and physically clean that **** off. Quickly, before anyone sees me.