My Husband, My Life, My Love, My Family, My Cancer
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Grannax amd gang, i’ve Been thinking about and looking into tools that would help me write some love letters to my kids. I think what we are all struggling with is how to say I love you, you matter to me, this is who I am.
One of the MBC groups I belong to at the cancer agency brought in a woman to talk to us who developed an app that is terrific. Her website is called recordmenow.org where you can download the app for FREE. The idea behind her apps was based on her research interviewing 100 adults/kids who lost their parents and what they would have like to have heard or talked about with the parents. I’m thinking I will leave my kids each something different but personal. There is also a group here in Vancouver willoweol.com that has developed templates and a handbook for legacy letters, letters from the heart. Both of these tools use questions to guide you and suggest answering them one at a time. It’s tempting to pile a whole bunch of stuff into one letter but I think the messages get lost.
Anyway food for thought. I’m going to start work on this legacy stuff this winter. I figure it will take time and a lot of thinking but I don’t want to leave it too long.
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Rabbit~When i read your post, I thought how important and special it would be if we all could be there when we needed the other more easily. Like no miles mattered. It complicates everything for everyone. Everyone needs support. Companionships that get it, that even not speaking at all you know how they feel. Without even speaking. You said you’re holding yourself up I wish I could help you or just sit with you and listen. Whatever you needed. I’m sorry you’re struggling. Battling this beast alone is awful, we come in this world alone, we go out the same way!
Look at poor Gracie. I always worried she died alone. I know her kids did the best they could, but something is sticking into me that around that time, they were planning a vacation. Poor sweet woman didn’t get to go. She fought so hard. For what? Pain. Agony. I don’t know. I realize that like Tanya said. Yummy desserts and treats. Smells of candles. And little things have to be enough for me now. Little trips to local markets the sweet tooth everyone mentioned got me wanting sweets. So I went to a bakery in the farmers market. I was so disappointed. Everything sucked yes everything. It was basically inedible. I was so disappointed. My last phone charger won’t work anymore. Ive just had enough crap lol.
I hope tonight sleep will find you precious ladies. Waving hello to Simone. Muddling, pots, Jen, Lynnwood Grannax, Mae, elle, yndorian, stillivin, Tanya,Minnie,Mara, Divine, Sandi beaches, a beautiful sunset,Parry😞, egads,GP, Runor, Bella, Rosie, MJH?🥺, JFL,JKL,Blueshine.Moomala,hope,elderberry,
Gn to anyone else I missed. Hugs..bigbhome..BooBoo....Philly....Chicagoan,candy..
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pots~Love the idea thank you very much for sharing!💙💙
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Thanks for your,I real empathy. I did write a letter, sort of. Doctor has made her FB posts public. I'm friendly with her. On FB. She writes daily posts that address her life.and diagnosis, very similar to mine,
Her writing is uncommonly insightful and beautifully written. It's touches my heart every single day. It's so insightful as to our lives with our cancer diagnosis and what real life is like for us,, it was a perfect springboard for me to use.
Yesterday's hit the nail on the head in regard to my life right now. So perfectly explained me and my feelings. I shared it to my timeline and wrote. a post that tagged my DS. He is studying for his oral boards right now. This will be his second attempt to pass it. He failed last September. Huge stresser. I wrote an appropriate "letter" revealing my struggles and failures, regrets as they corresponded to Gumdoctor's.. No pointed fingers, no criticism, nothing to offend hIm. Just insight.
. Thank you Gumdoctor. I used what you wrote to share the innermost me with my DS.. I'm praying it will help with my relationship with him. Public but personal as it gets. I'm praying that after is boards in September, we can have a private heart to heart. You are a physician, you get what he's going through right now.
I did have a good day today with family. We celebrated my SIL bday. I only got three hours sleep last night. Morning came early and I was distracted and very busy all day. Answered prayer.💞
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It was either a book I read or movie I watched where a dying woman wrote letters to each of her three children to be delivered after her death. Each letter began, "Do not tell the others, but you were my favorite..." I thought, what a clever and loving thing to do. And if those kids ever do compare letters and realize the dose of love that their mom left them in those simple words, in all of them being her favorite... they will be touched.
Grannax, I feel a burden in my heart for you reading about your family struggles. I have fraught relationships and I have pondered long why that is andI think it's because I say what I think. I say what I see. I say how I feel about it and what I want done about it. This is the dead opposite of a conflict free life. No one would ever say I am easy to live with. But no one will ever say that they didn't know what the problem was or didn't know what I was thinking. They know. I keep no secrets. I deliver no passive aggressive messages. I do not mumble my feelings under my breath. Which I think is the HONEST way to live. Not pretty, not peaceful. But who in the hell ever said life was going to be pretty and peaceful? Life is ugly and messy and unpredictable and stupid. But I can meet it with honesty and a willingness to be honest with the people I love even if it picks their ass. Which it does.
But I have a DD who is .... hell bent on the most destructive path she can find and I spent years nagging, nattering, lecturing, philosophizing, proselytizing, predicting , warning and ...shit went wrong anyway. So I had to re-think. I realized that you can't teach anyone a damn thing. Warning them does no good. My words rolled off Daughter like water off a duck. And then came the day I opened my mouth to impart my hard won Mom Wisdom and out came.... nothing. I closed my mouth. I nodded my head. I said , "yes, you continue on as you are now. You take this path you have chosen. There is a lesson coming your way and it's going to be a good one. I am going to get popcorn and take a seat to watch the doings. So you go ahead, knock yourself out, carry on. You will be smarter and wiser and I can hardly wait." THIS made her stop and think. When I quit trying to teach her and instead invited her to experience all the brutal, hard lessons life has to offer her. THEN she stopped and gave a small thought.
I think all we can do for adult children who are living in ways that are obviously wrong and stupid is step back. It's their life. Their experience. You cannot stop the pain they have coming. Pain can be a very good teacher. Perhaps what you can do (and this is obviously just a suggestion as I do not grasp the nuances of your situation) is write them letters and say something like" I love you. I have faith in you. I did my best to prepare you for life. But no mother can do that job 100%. So life is going to hand you a few learning moments that are going to really, really hurt. You will be set back. You will suffer. But in the end you will be a better person, a smarter person, a kinder person. And I have all the faith in the world that you will learn and grow from all the trials that are coming your way. I am sad that it will hurt you, but so glad that you will end up the amazing human I know you will be. I love you."
Daughter breaks horses. Some of them are nasty as hell. Wild and dangerous. Rodeo stock that smash men to the ground for a living. She puts them in a round pen and runs them. She runs them and runs them and steps in front of them, they wheel the other way. She cracks that whip, working them until they are lathered and their bodies quiver with exhaustion. Then she drops the whip, turns her back, walks away...and they follow her. At some point we moms have to walk away and hope that what we've done sinks in because what we haven't done is out of our hands. Our kids either follow the right path or they don't. It's up to them. For a mom nothing is harder than knowing this, dropping the whip and loving them anyway.
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Tanya, what a funny story about seeing that guy's thong thru his pants! One recent summer dh and I were vacationing in Ocean City, MD strolling through a neighborhood of multi-million dollar homes sitting right on the edge of the ocean’s bay side, and we saw an older man sunbathing nude on his balcony. Dh whispered to me, “why doesn't he cover that up?" And I said, “oh, the rich follow their own set of rules." It was a hoot, too! Definitely hadn't expected to see THAT on our walk to look at expensive homes! Lol
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Radagast- Holding you up right now.
Ok, so all that good food yesterday is haunting me today. Tummy angry. TMI.
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Kind of disheartened right now. I had my monthly labs last Tuesday. They included monthly TM's. I finally saw results today for the TM's on the patient portal. (They are sent to an outside lab and I always get the results later than the other monthly labs) Up again this month. 3rd month in a row that they are trending up. Not drastically, just ticking up. No call from MO about it. But last time I saw her she mentioned the uptick over 2 months (the third month result not done yet). I said to her that it could be inaccuracy or progression not seen on scan yet. She answered "Yes, could be either". I am kind of feeling that things may be slipping. I don't have any new symptoms. Just feel the same--cruddy. But Sept is 2 year anniversary of MBC and still on first line therapy. Just feeling down and scared.
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Candy, I am sorry your monthly TMs are going up and I am sorry you are feeling cruddy. Having your MO also open the possibility of progression is also scary as well. Let me wrap you in a huge virtual hug. I will also send all my healing thoughts your way. I know that they may not help directly but I like to believe it can at least make a person feel a little better when the roller coaster is going the crappy route.
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Just had my bloodwork done hadthe same talk. The nurse said a few ticks in tumor markers. Could mean you're battling a cold Or virus. It's the double digits and large jumps they panic about. I am sending you hugs! As i also wait it out for my own markers yet again.
Love to all. Hugs and love.
Hi Grannax.
Gumdoctor ? You alright ?
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Thank you mara. My last scan in July showed stable. Next scan Oct. Just kind of freaky to see labs ticking up. Kind of "Hey don't get too cocky, cancer is still here". Disheartening. I will have another TM check mid Sept and will see MO around that time. Thank you soooo much for the virtual hug. Needed.
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Micmel-- From May to August 10 points difference, with each month ticking up a few points more than the last. Slow progression, but progression all the same. I don't think cold or virus since May. And MO brought it up last visit, not me. Virtual hug going out to you too Micmel. We need a group hug. I love you all.
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Mel, all my same healing thoughts and hugs going out to you too. It's just hard when you don't know for sure if it is the cancer causing TMs to go up or like you were told, a possible cold. It's so uncertain. I don't have tumour markers here but I can see that they add an extra layer of stress to things for sure.
In my recent scans, no evidence of cancer was found but glass opacities were found in my lungs. I find that particularly scary because those can be indicative of lung cancer which is what my Mom had. We both had smoked and quit long ago but that possibility always lives in my head. Can't imagine TWO cancers at the same time though I know some on this site have dealt with that. I choose to believe they are remnants of a cold or two I had recently, one of which did give me 24 hours of coughing.
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Mara- Are they just going to monitor the lungs? See what next scan shows?
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The MO is not concerned about my lungs at this point. Since I have regular scans every 4 months I am sure something would show there. I will talk to her about that next time I am in as this does scare me. The conclusions of the scan surmise that there was a waxing and waning infectious/inflammatory process and they will be reassessed. My MO is happy with the NED below the head findings and has not expressed concerns about lung cancer. I will let her know this is a concern of mine for sure. For now I will outweigh my concern with the lungs with the blessing of my body and brain both reporting NED. I know I am quite lucky and will take it for as long as I am allowed to have it. I want everyone to have NED forever as far as I am concerned.
As far as my Mom's own experience, she was declining in health for probably a year and a half. She was on heart meds so lungs were not scanned until nov 2018. Hindsight is 20/20 and I do wish both of us had pushed the doctor to scan her lungs as some of her symptoms indicated breathing problems. I think she would have died anyway, but she may have been able to be comfortable for a longer period of time before she was robbed of her mobility so quickly and had a better quallity of life. Unfortunately hindsight is 20/20 but that hindsight will aid me in my own experiences with my cancer and lead me to be more pushy if I think there is a problem. Fortunately the scans happen enough of the time for body, brain and occasionally bone that I should be covered. The only place I wonder about sometimes is colon, not 100 percent sure if polyps show up in the CT scan. My father died of it so I need to have awareness about that to. Not due for another colonoscopy til 2021 or 2022 I believe.
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Thank you Grannax
You are one of my regular followers I truly hope using what I wrote can help communicate what you want them to know. We have common human experiences...even with those who have no cancer...
All - I have been skimming...just not posting much...have gotten really into my daily blog posts on Facebook...they are helping me a great deal.
Also have been doing some road trips. Driving to Ft Campbell Kentucky right now. Will be there most of the week, meeting with VA evaluators as they prepare my VA claim for when the Army discharges me...if I live that long...
Doing ok...just very exhausted...chemo...
Gumdoctor
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gumdoctor I am sending you some energy and love! I hope you are getting the rest you need as you go through this treatment and it sounds like you are also doing some cool traveling. I am not on Facebook but it sounds like you have found a good outlet to share what’s on your mind, which is so important!
Hi to everyone! Hi Micmel!
I am having one of my spend the whole day in bed days. I had a headache when I woke up this morning as well as felt a little queasy all day, so I am giving myself permission to just rest. Binging on the very very silly show Below Deck.
Hugs and love to everyone!
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Gumdoctor- You sound tired in your post. Get as much rest as you can this week--with all the appointments you have with the VA. Take care.
Philly- You rest too. And enjoy the binging time.
My tummy has been on the blink all day. Just yuck. Going to bed early tonight.
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Thinking of everyone. Preparing for our last cross country move and changing care teams (truly frightening). Have not felt so scattered in a long time.
Hugs all around!
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I hope everyone who is feeling unwell feel better soon. I know I always say it but my healing thoughts going out to everyone.
Hello to everyone, even people I have not talked to yet, it will be nice to meet everyone.
Mel, thank you for this thread. It is good to have a safe place to go on BCO and everyone is friendly and close.
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micmel, I guess I’m having trouble communicating what I need, I guess it would be fair to say that I don’t know what I need, my feet feel like they are floating looking for solid ground, I keep hitting speed bumps trying to get treatment started, ie: ovaries need to come out now. Which is pushing starting Ibrance back yet again. Just when I settle myself in for the long haul thinking life will become more routine with a plan in place it keeps changing. Somehow when things were crazy I was able to support my chemo group during and after the madness. But stage 4, it’s such a different beast. I struggle with words to say to other stage 4 women. I don’t want to say the wrong thing and want to say the right things.
I met a stage 4 de novo woman in the waiting room for chemo when I was Stage 2. I feel I failed her, she tried to open up to me and all I could really do was sit sorta stunned but attentive. I wish I would of been able to encourage her, I know she needed it, I wanted to hug her but felt pinned to my chair. She had burned through many lines of treatment and was nearing her last options. Her last words to me was she just wanted to be around as long as she could. Her name was Karen, I haven’t seen again and I’m at that office often. I feel some of the emotions now she felt and kick myself now for not speaking up in that moment all these months later now that I’ve become stage 4 too. I was too busy pushing back feelings at the time and saying to myself that’ll never be me. I was wrong. Very wrong.
I’ve been watching all the ups and downs on this thread. Cheering the good news and crying with the bad. I know I’m in the company of women who are by no means frail and are strong and push headstrong into raging tsunamis of chaotic bs everyday but I fear again saying the wrong thing. Id like to support like I did my chemo group, by being frank silly and try to give people a laugh or smile - I’d like to learn and grow. I need stage 4 lady friends very much right now in my life. My dear husband’s ear needs a break and my friends try to get it but they don’t so I feel so out of place sometimes. I have great support from my chemo group but only 1 other lady is in my shoes there. I tend to try to go it alone with what support I have and wing it, but I can’t at Stage 4. I’ve blogging podcasting everything I can think to empty Cancer memories from my brain to cope. It helps me some but it’s not enough. I know I need more support, I just don’t know how to ask for it.
First zometa Friday afternoon made the weekend rough, Saturday was worst, Sunday slightly better, today almost myself. I’m just plain scared about a great many things, I think too far ahead I guess.
That’s my long answer for why I’ve only popped on this thread a few times...just scared when it comes down to it.
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Mara~ I am happy you found us. It's like a family to me. Which I need. Sometimes others who are in the boat with you understand more then the people waving goodbye from port. You're at home here. Just enjoy it. Vent, scream laugh yell whatever you need. It's your home now also!
Rabbit~ help comes in many forms, you feel free to vent your open feelings here. I ugly cry here weekly some of my weakest moments I have dumped out here hoping someone, anyone would feel the same way and I would make a connection. Then I found the need for a second family. Here. If you say you need further support pick someone you trust and open your heart and call them. Hear their voice. Let them become apart of your days. It helps tremendously and they become a sort of a North Star. You feel things together and you always have an outlet that understands your most inner fears. We are going through the same thing. Personal message me anytime. If you need an ear. Please know. This is a shitty shit stew, stirring constantly, and we go along in the pot of boiling shit stew round and round. Find one thing a day to find happiness. My nurse told me today. Doctors don't really knowOur bodies and what it can do. We have all been through a lot. But we can continue together!! Anyway you look at it, we still have to go forward. No matter what we must attempt to live. I am always here. Sweet woman ❤️
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moving~soccermom! Hope you're having a good day. By your name it would seem you're constantly a busy woman. I had my bloodwork and XGeva today. Just dandy! Bloodwork was good. I was pleased. Markers exceptional again. I just keep hoping it can continue. I hope against hope I can be an outlier somehow. I wish they would get it together!
My nurse told me today that there is so much coming down the pike, that they are excited but even the public doesn't really know the depth. I was like really. And she said. Yes. Good things, don't give up. Immunotherapy. Is supposed to be coming around. Apparently!
I sure hope so!!
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INSOMNIA! Insomnia!
Goodness gracious ladies, it is relentless!
How is Mae?? Divine? Pots.... Blueshine... has anyone anywhere heard anything about Parry? Been since MAy I believe.
Hope everyone else is sleeping. Minnie are you awake at this time? Don’t have the time difference down at all. My body is tired but my mind isn’t. XGeva gave me massive energy today. Weird. Things are changing with my good time frame before my fatigue kicks in. Just odd. I am just thankful my markers are very good. They seem to tell the story with my health. Today the nurse called me healthy. So I looked around the room assuming she was talking to someone else , but she wasn’t. Maybe she was hitting the vodka early today? I’m going to try to go to bed. Now. Wish me luck I’m going in!
Good night lovely ladies
RIP~Gracie you beautiful soul!
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5 AM alarm . UGH At least I finally slept well last night. 7:30 Appointment at Cancer Center, Labs, MO then chemo. At least I should be done by 11:00 AM. Then have to go see IR about infection in my new port. Hopefully, my MO won't freak out when she sees my incision, red and inflamed, obviously not responding to antibiotics. Hopefully, she will let me have chemo today. Hopefully, she won't get mad at me for not telling her about it. 💞
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Grannax - Good morning. Hoping for your best today with port infection...will be thinking of you thru the day.
Rabbit - Your heartfelt post is so familiar to me. Please do not berate yourself over not saying the right thing. You didn't know what to say. We learn from our experiences. You are getting your experience on what to say...right now with your metastatic cancer. Your fear...is so human...and so real...and so common among us. We are trying to negotiate this impossible frontier. None of know how to do this...until we learn how to do it...by doing it. We have all been where you and are still where you are.
Please just focus on hanging on until it gets a tiny bit better. It will get a tiny but better. And maybe alot better...
Gumdoctor
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I have a tiny funny story...
I am traveling to Ft Campbell Ky to have some VA medical appts. I stopped at a nicer hotel than my Iowa trip over the weekend. They was a cute guy visiting with the front desk ladies. Grey hair. Obviously tipsy...
There is me...exhausted...bald...didn't wear my wig in to check in...who cares what I look like...I just need a nice bed to crash in overnight....
This cute guy with grey hair hones in on me and asks if I am a cancer survivor...oh boy...here we go...
He ends up hitting on my and wanting to take me out for a drink!!!!!! I laughed in his face...not rudely...just the whole thing was too surreal...
I think he might have a thing for bald cancer patients...
I guess I still look cute in the face...and still look decent in shorts...and in a way...this is flattering...
Needless to say...I went to my room...ALONE...and spent the night blissfully sleeping...ALONE
Gumdoctor
I haven't been hit on in many years...
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Good morning all
Ragasrabbit the best thing I found for numb feet is floating in a pool or water. It is wonderful for my neuropathy. A nurse told me to take my pain meds so I can move and boy is that the truth. I push myself to move and it releases endorphins which actually make me feel better. I check in on my husband laying in the bed and I ask what’s up with you and he says he’s depressed bc I have cancer. Move it move it move it! I yell at the army sergeant they’ll be plenty of time for sad guy who’s wife has cancer but not today. Let’s go.
Mel nights are the worst. I hit the MM and throw in an ambien too sometimes depending on the thoughts and racing mind of the evening. Whatever works rest easy dear. Congrats on the great test results.
Gumdoctor you’re still fine!
Grannax you should be getting tx by now and your doctor should be finishing up her scolding. In your pocket warrior queen.
Hope everyone who’s going through something today finds the courage hope and strength they need
Tanya
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That's awesome Gumdoctor.
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