My Husband, My Life, My Love, My Family, My Cancer
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Mae and KBL-We don't know for sure what happened with Jaycee because her husband didn't post but based on her posts in her final weeks, I think she decided to stop all treatment and to use the law that she had gotten passed in New Mexico for a medically assisted death. It seemed like her MS was causing a lot of physical discomfort so she didn't want to try any other breast cancer treatments after Ibrance and the WBR. I imagine for someone as articulate as she was, it was very unnerving when her brain was affected and she had just had enough. Sad stories all around.
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Chicagoan, thank you. I am so appreciative when someone can share real stories and let us know what happened. I know I can count on my sister to post when my time has come
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I am so sick of death !!! I know it will come to all of us. But, damnit, it is in our faces all the time. Before cancer, Yes, I was going to die sometime. But it was not front and center all the damn time. Now, especially after losing Samantha (Rabbit), I wonder how it will come to me. Will it be a blood clot (I have had them before), or the stupid Covid, or the cancer, or what. It is better to know it is coming or BAM out of the blue. I am not ready. I am a Christian, and as such, believe I have a home waiting in Heaven. But I want to stay here longer. My best friend is my cat. I live alone and he is my roommate. I don't want him to wonder where I went. Who will care for him?
I want to live to be an old lady. I want to not have to think about death every single day now. Some on here have commented they are stepping away after Rabbit's death, just too hard. I don't want to leave you all. I want to hear how you are doing. But when we lose one it is getting harder to deal with.
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candy we have organizations here that find new pre-screened homes for pets after people die or enter hospice. Ours takes preregistration... they also help pets when women have to enter a domestic abuse shelter....usually pets aren't allowed so they're fostered with the organization until the woman is back in stable housing.
Maybe call around animal.rescues in your area and see if there's such a thing where you live?
Re cause of death, I was told it it would be written like "organ failure secondary to breast cancer" ... mechanistic explanation and then the underlying condition which caused it if known. Cancer on its own usually doesn't kill; it causes systems to fail..we die because of infection, lung failure, multi system organ failure, heart failure, aneurysms, hemorrhage, ischemic stroke etc etc but they're all secondary to the cancer because cancer causes the whole system to wobble and fall.
I don't know if I want quick or gradual. I don't want it at all
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Candy I agree. It seems to be everywhere. I thought I was dealing with it okay but I think the leaving my loved ones is still a trigger for me. My parents are in their mid-70's. It is my goal to outlive them. I have noticed that I don't cry about much related to cancer except when I encounter reminders via TV or conversations or situations where parents have lost their children or I get frustrated with the changes in my body/appearance. I am still working and had to recently step away from my job in ICU to protect my mental health. Since this pandemic started ICU has seen someone, sometimes multiple someones die daily. That used to be one or two a month, maybe. I can't do it any more. I can't hear the families grief and it's gotten harder to do the post mortem care. I just don't seem to have the ability to separate my situation from what's going on around me and it's gotten too traumatic so I'm leaving.
How do you all cope? I walk and I go to the gym. I go to church and I have my faith and in the better months I garden. Right now I am not a fan of the cold or the wet so my yard is a little neglected looking. My soul recharges with a good book or a good workout with my favorite music. I pray a lot. That's how I get through this. I have to soak in the positive where I find it.
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my ability to live a pretty ordinary life is basically how I cope. When I get down, I make a day of it, order pizza, watch a sad movie, have wine or ice cream and get it all out, then move on. When I’m up, I rarely think about it. Ideally, my death will be far off in the future but I do want it quick, maybe I’ll get hit by that bus everyone talks about, lol.
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Mae - On my up days I soak in as much normality as possible too. The more I can function like I don't have cancer, the better off I feel. Pizza and a movie or a Netflix binge is the best! Or good Chinese food. Also on my list of top 10 favorites.
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I too have things to "get away". A good book. Or a good movie. Or just being comfy in my home on a cold winter's day.
But then death sneaks in. Last night I came across a good movie "Fried Green Tomatoes". Have seen it a million times. Have some of the script memorized. But then, BAM, the scene of the character dying, of course, of cancer. Or watching the weather and a story comes on the news of a child dying in an accident. Or the commercials of children with cancer at St. Jude Hospital. Sadness all around us.
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Hey ladies my therapist shared with me today an activity. She said to write on little pieces of paper some happy moments during the month and at the end of the month read them all. This was offered to me bc sometimes I focus on the stressful and traumatic events and lose sight of all the good that I have in my life.
Mae I think if I have a pizza icecream movie binge I'll write that too because boy does that sound amazing!!!!!
Tanya
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the difficulty for me is that I don't feel I live an ordinary life anymore. 21 months of taxane chemo has worn me down & I'm dragging myself around. Giving up on one thing after another means that I'm constantly reframing what the good things are. Right now I'm super anxious about getting this med approved and starting treatment...& whether it will work (it only works in ~30% of patients). I can't get comfortable sitting; can't tell if I have an anxiety stomach ache or my liver mets are bothering me.
& then I get into a spiral of "oh no, what if this is the good day, what if it goes downhill from here, then I have to make this count, & am I really? Is this enough? Should I push harder?" but I feel like crap so I don't...& then I just feel bad for not "living my life to the fullest!" like all the inspiring social media cancer posts which get tons of shares & likes tell me I'm supposed to be doing
anyway. I'm obviously in a funk
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Chicagoan, wanted to say that I have done my first couple walks with the walking sticks and cleats on my shoes too. Feel very sure footed and like the extra balance I feel when I have them. The adjustable shoe horn I bought helps to swap out cleats for regular shoes when shopping as well. Thanks again for making me feel so safe when walking. Still planning on more park use once the snow is gone for good.
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Moth, you are most certainly in a funk. I also don't think you should worry about what the inspiring cancer poster is doing when you are feeling badly. Your energy is gone right now and it is hard to want to do anything in that situation. Only thing I can think of is don't bother with the inspiring cancer poster if they make you feel like you are not living your best. You decide what is best for you, leave the past self in the past as best as you can. That line of thinking and regret will just make you feel worse. Find something you enjoy, even if a good movie on streaming, a walk around the house or on the spot if no energy or outdoors if nice. The cross country skiing on the snowy street looked cool as well. Just do your best to remove the thoughts about how much more you could do before, be amazed at what you have done just being here and doing other things while on active treatment.
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Moth, the mostly normal life I live is rare and temporary. I also have pretty low expectations, so almost everything ends up good or better than I thought. When I still couldn’t eat in 2020, a bright side was hard to find and I put nearly zero effort into anything.
Tanya, nice tip from the therapist but I’d be writing too much.
This morning I had a bowl of Raisin Bran (which I haven’t had in years) for breakfast and it was fantastic, even resulted in a yummy food body wiggle, you know the one, right?
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Mae, I really like your common sense and your outlook on life. I envy you enjoying a bowl of Raisin Bran. Like you, I'm on Xeloda and Tukysa, stated in early December, and I'm having a really tough time with diarrhea, loss of appetite, mouth sores, even some HFS. It's hard to find something to eat that I enjoy and that won't upset my stomach. Did you have any problems when you first began taking these drugs?
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Mocogram, yes, I absolutely had some problems but not mouth sores or HFS. The first cycle was awful, it took a dose reduction from 4,000 to 3,000 daily, Imodium and nausea meds to get things right. I took the OTC side effect meds as needed until no longer needed, it took about 2 months for my body to adjust. Keep at it, you’ll get there
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Mara-So glad those poles are working out!
I'm up for a pizza/ice cream party. I"ll take pepperoni and chocolate hip!
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I read here all the time but rarely post. I got a bit behind. I was in the hospital for clot in leg and a small one that traveled from there to my lung. So now I am on a blood thinner (Xarelto) indefinitely. It got me thinking about how the end will come. If a larger clot traveled to my lung that might have been the end. Now I also at risk for bleeding.
Candy...I also live alone with my two cats.
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Illimae- I am on a Raisin Bran kick right now too! I really am enjoying it and when I told some friends yesterday they were like…oookk. Started because we are watching Seinfeld episodes in the background and he’s always eating cereal.
MoCoGram, I’m on that regimen and still have some appetite problems. I can always drink a Glucerna Hunger Smart shake though. My HFS didn’t show up until 3 months in and I constantly have to watch it, deal with it.
Today I took off work to sleep in, had my 3-month EKG and my heart looks amazing. Well at least I have that going for me. Picked up my last 2 CT and MRI scan discs and sent for Monday delivery to MDA to get a second opinion. We’re going out to dinner tonight because why the hell not, no time like right now.
Moth- I made a list of things I need to do, I’m a planner, it’s what I do, and it makes me feel better, if the end is years from now, great. If it’s sooner, well then at least I’ll have some stuff taken care of. But when I woke up this morning all I wanted to do was lay there and watch Seinfeld, not living my life to the fullest but the pressure is there to do just that.
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We have all lived or keep visiting "Funkytown". If raisin bran cereal gives Mae the body jiggle then we can all get down to what would make our body jiggle. For me it would be great dance music and a box of chocolate maraschino cherries!
When really down as I have been lately I go outside and look at the snow covered trees or see the moon shining on the water or feel the sun on my face. It's the beauty that surrounds me. Then I go inside and say f...it!
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Chiris~ good to see you back. Sorry about the clot problems. Sometimes I think I want it to be quick and then I look at my sons crystal blue eyes or my daughters beautiful smile and spirit. My dss' laughter and kindness. My DH and his special way of loving me. That makes me re think the speed thing. Hanging on to every minute then comes to mind.
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Kikomoon, yay for the good heart! You sound better today and yeah, why the hell not. If you do end up at MDA and have time, maybe we could meet for lunch if I’m in town or if you have questions about any of the doctors, I’ve seen a lot of them, fee free to ask.
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Dutchiris, so sorry about your clotting issues. I am hopeful the blood thinners will keep it in check.
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Got my Lupron shot and Port Flush today. Woohoo. What a life anymore for that to be my "outing".
Dutchiris- Good to see you back. So you are a "cat lady" too. Sorry to hear of your blood clot. I had one in May. I am now on Eliquis blood thinner-- a pill twice a day.
Moth- I guess I am in a funk too. My "social circle" is smaller- not in the workforce, doing Covid precautions, not as busy busy as I used to be. "Good things" are cuddling up with my cat, reading a book, watching a movie. But used to "good things" was being busy with work on committees and having projects to complete, going out with friends, looking forward to some activity being planned with the church. My "good things" now are peace and quiet and lounging around. Reflecting on the sun coming thru the window. Nothing wrong with that. But just feel lonely and definitely not feeling like I am "living my life to the fullest".
Mara- You have good advice, I just need to heed it.
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I LOVE Cinnamon Life cereal. That gives me the jiggle giggle. I was thinking back to all of the truly awful cereals (loaded with sugar) we used to eat as kids: Frosted Flakes, Sugar Pops, Fruit Loops, Trix etc. But oh boy were they delicious as a kid. Never too much sugar. What kinds do you remember?
Update: I made it to PA…back visiting my sisters. My sister Rhonda (my person) has friends from her church who have a basement apartment, and she happened to ask them about renting it to me. We went over to see it yesterday, and I was shocked by how nice it is…doesn't feel like it's in a basement. Anyway, my sister's friend just finished chemo several months ago, so she is very sensitive to what I am going through. Get this: they only want $100 a month for rent. I argued, but they insist that's it…they honestly didn't want anything, but said $100 a month is all they will take.
So, I will be moving back to PA sometime the week of March 1st. My youngest sister from TX is going to fly to FL, and then the two of us will take a road trip to PA. She is going to handle where we stop along the way, and we are going to have some fun doing it. We call ourselves “Thelma & Louise" because we have been know to get into some trouble in our younger years. So should be an interesting trip.My husband refuses to leave Florida, so we will live apart for some months (May thru October) and I'll return to FL in November (if I'm still here). I am SO happy that I will be with my family for the Spring and Summer. That's really what I want most. Hubby? He'll learn to live on his own and hopefully be able to ask questions and get answers to things I haven't thought of to write down. He is welcome to join me in PA if he wants, but all together, this arrangement is probably our best scenario for everyone.
Hey Mel, looks like we are going to get that F2F at some point. Hopefully sometime this Spring.
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Booboo- I am so happy for you ! 100.00 for rent? Who wouldn't move there! Being near your family is very important and if your husband is ok with it then that's doubly important. Thelma and Louise are on the run!
I'm hoping to go spend some time with my family in Ontario in the spring. It won't be for that long but it gives me something to look forward to.
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Moth, I’m sorry you’re in funky town. But I look at you and see how much you’ve accomplished while going through all this and it inspires me. Screw those “well-meaning, live-your-best-life cancer people”. We ARE living our best lives because we are still kicking.
My mood fluctuates a lot and I’ve been down for a bit. And that’s okay to express here because you all understand. It’s like being in the military to me, all of the services can joke amongst themselves and make fun of each other or what not, but the moment an outsider says something about one of us we present a united front. I’m not sure this translates out of my head so sorry if that didn’t make sense….
Kikomoon - Glad you’re getting a second opinion and happy your heart is looking great! A good cereal kick is a joy.
I think right now being still relatively new to this I cope by pretending it doesn’t exist. I live a relatively normal life so I’m able to ignore it occasionally. But when the fear and sadness rear their ugly heads I’ve been partial to DQ Reese Cup blizzards with extra peanut butter.
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Katyblu- it absolutely makes sense to me.
Mara - great advice, as usual. I love that the walking sticks are helping you feel more confident.
Hugs to those who are in a funk right now. I try not to beat myself up for not being able to - or sometimes not even wanting to - do as much as I did before. And, I try not to linger on sad thoughts or worries I can't control. I think it's especially hard when we lose someone so suddenly. Besides the pain of the loss, it makes me revisit and face down my fear again.
Tanya- I like the "happiness notes" idea. It would be fun to save some favorites for the end of the year, or those especially low days we all face.
Dutchiris - sorry about the blood clot and hospital stay. Glad to see you back.
Booboo - so glad that you will be home with your family - it's easy to tell how happy you are when you're there. $100 for the room is amazing.
I love all the ladies on this thread, even though I cannot keep up and reply to each as I would like to; I need to check in more than once a day, I think.
Waving to Mel, KBL, LivingIVLife, Candy, Kikomoon, moth, and everyone else!
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Booboo, that’s a great deal. While it’s kind of sad that your husband won’t be joining you anytime soon, the situation may end up being less stressful.
On occasion I crave captain crunch with crunch berries but I only buy the single issue bowl, so we don’t have too many sweets in the house.
Got a lot done this week but we’re taking tomorrow off to go have dinner with the friend who is now nearly completely recovered from the West Nile virus. Hopefully monkey cat will come out to play.
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SeeQ, thank you. I’m waving back.
My favorite cereal is Cocoa Puffs. I’m a chocoholic. I don’t buy it, though. I would eat so much when I was younger, the roof of my mouth would be raw.
Booboo, I’m so glad you get to move to your happy place, and what wonderful people to let you rent for $100.
Mae, after quite the ordeal with your friend, I’m so glad he’s almost back to normal since it was such a touch-and-go situation.
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Booboo- I am glad you will be with family in PA, and the rent can't be beat. If you are ok with your DH not going, then more power to ya.
Not much here. Snowing today.
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