My Husband, My Life, My Love, My Family, My Cancer
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Muddling,
My onc does not even use TMs. She said there are too many variables that cause them to go up and down. So we rely on the scans, CTs, or anything that will show progression or not. You’ve got this. Don’t let your TM upset you. We’re all behind you!
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Thanks for your kind words everyone. Booboo, I hear you, and agree for lots of patients, but mine have been very accurate for me all along. Maybe it's a blip. Or not. I have to be clear eyed.
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Muddling~ for you sweet friend.
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Moderators, I cannot think of anyone offhand with a great caregiver story but will keep that in mind and direct anyone that I come across your way.
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Muddling, hoping all will be ok for you.
Micmel, my hip/pelvis just the same. 3 fractures in the axial (I think it's called, the bone you can feel at the sides of your tummy). Surgeon said it would be a threat to life to operate at this time. I can get around on crutches, the pain is not so bad. I see him again end of June. Just had my Mother here for a week, so pretty exhausted with beach and shopping and meals out, she's only 90!! My DH has gone to 🇵🇹 Portugal for a European football competition, so I have 5 home alone days to do what I want when I want. I can still drive too, just can't go,shopping unless I have someone to carry the goodies xx
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Minnie~you still do more than me!! I have jumpers, the aches and pains that change daily. I never know what I’m going to deal with. My results were posted. I was complaining about my rib, because I had a fracture in it. Although I wish it would say how long that was there. I know I tore my rotator cuff for sure. I know they’ll say ohhh physical therapy first, surgery second. I don’t want another surgery. I am worn out from surgeries.. I know we all are. I really hope your hip is more inflammation and irritation more than anything. I think Of you often.
~M~ hugs
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hi friends! not sure what’s going on with me this week - just feeling kinda blue...energy has been low all week and I haven’t been able to get myself up and out for much except work. I could stay under the covers all day long it seems :-/ how’s every one else doing? It seems like even though scans have good results, there’s this deep level of sadness and/or grief that just lingers...it is felt even with the antidepressant...it is simply there...like, my life hasn’t resigned to living with this disease and I’m just bummed out about it. Blahhhhhhhh
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I think we all get that for sure. Without a doubt.!
I often felt the same way you do, I woke up at 715am Fed the dogs and was back napping at 10:00. Just woke up. Feel like a zombie. Having cancer is sad period!
Sometimes this disease makes me feel like a stranger to myself, like a chestnut haired nothingness, alone inside a body that once was mine. That has been damaged by chemo and all the drugs necessary for me to live. All those chemicals that are highly toxic and slightly paralyzing, forcing me to experience an intolerable suffering and pain. I have never known. I miss my life. I miss who I was. I miss my strength and desire to thrive everyday.
Does this sound like some feelings we have all experienced? These words were directly from Farrah Fawcetts writings , with a few words changed because I am not blonde. But it struck a Chord with me such a Chord. I wrote it down. So yeah I understand the underlying grief that never subsided. Good news or not. We have each other!
Muddling~Thinking Of you
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thank you Micmel!!! ❤️❤️❤️❤️ Somehow there is consolation in knowing I am not alone 💛💛💛💛
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Philly and Micmel, I think that pretty much sums it up for all of us. Some days you rise above. It's hard on You, and on those around you
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unfortunately we all get it for sure. I went outside for a second to move a trash can. I looked up at the sky and it was clear and crisp air. Stars galore. Made me think of my dad and wonder. What really is out there ?
My DH is coming a day early this week. Tomorrow is oncologist visit. He always wants to go with me. It's amazing. I love that. I get a reprieve for about 6 months. But like philly said. It's always there !! Love to all!
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Philly, I wonder if the blues could be adjusting to life after vacation. I returned home from a few trips to a kind of “now what do I do?” melancholy.
Just checking in, I’m good. Looks like everyone is getting by ok unless I missed something.
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Good evening ladies,
I went to Orlando with DH DD and grandkids we had a nice time. A few of my friends joined us and we had a breakfast and dinner together. Just a little getaway it's about an hour drive. When I go away I don't think cancer thoughts as often.
Philly cancer is the scariest thing ever. We don't know whats going on inside and the not knowing gives me anxiety. Even when I try not to think of it some pain, neuropathy, or feeling will jar me back to reality. I don't think any medicine can touch that kind of anxiety but I hope whatever you take helps a little.
Muddling I'm thinking of you. No matter what anyone says I'd be scared right along with you. But like Micmel offered there are lots of other treatments but none of us wants any progression ever. sending you a big bear hug.
Booboo sorry about the progression. Looks like you're in good hands at Moffit though, they're rating is excellent.
Mae your cabin looks fabulous, peaceful. The deer colors are so camouflaged I could barely make them out, thanks for the red numbers.
Skitz the Halaven sounds vicious. I just hope it knocks that cancer out and then you can recoup. How long do you have to take it? Good luck on the scans next Tuesday. Enjoy your Florida trip Friday> It's hot.
JFL I'm glad the tamxsifen is working and is tolerable. Good news about the liver enzymes.
Grannax I'm sure that shed is toast. You and a crowbar watch out world!!!!
Minnie 31 ouch three fractures. How does that happen? Glad to hear about your mom visiting.
Parry it was nice to see you posting last week.
Micmel congratulations on the NEAD scans!!!!!!
I hope I didn't forget anyone but I'm sure I did. Acupuncture in the morning so I can get some relief from this hip pain and stuff. I always am amazed at how much energy I get when I go away.
have a good night all.
Tanya
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Dear LovefromPhilly,
Thank you for posting. It summed up exactly how I’ve also been feeling. I see my onc today to discuss treatment options, and although there are many out there, as Mel said, it’s still ugly thinking about the toxins in my body. But I guess I’m glad they are there. If not, I’d already be gone.
I forgot to tell you all that I had genetic testing done at Moffitt, and the report came back with no findings. They tested 83 genes, and there was no trace of mutations in those genes. Weird. I think my case is different because of the complications with sarcoidosis. But I’m viewing this as good news.
Tanya, good to hear from you. We are going to Disney at Christmas time. So nice it’s only an hour from us.
Mel, hope your onc visit goes well.
Laurie
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Mae~For me the blues certainly come and go. Like when I se me things I can no longer do. I loved the beach. Now the heat isn't pretty. I sweat constantly and always have to be out of the sun. My skin used to tan so nicely. Now I just can't be in the sun. Too dangerous anyway. Although, I come from a generation of sun worshipers, slathered in baby oil and out in the sun all summer everyday possible next to my pool! Ahh those were the days.
Tanya~ I love how regularly you see your grandchildren. That is heaven in itself. I know when my onc says there are many tx out there, I think to myself, what side effects are going to emerge and how will I feel? I am not a person who enjoys change at all. So I get exactly how that would feel. I guess what I was trying to say is, at least we can try to go on. We aren't at the fair out of tickets to ride. We ride on!
Booboo~I also am on my way to the oncologist. I hate the noise of his approaching cart.PTSD just seeing the building honestly. As I watch a neulasta commercial. Ouch those are bears. I hope you hear no progression and you can stay your course. They may do a watch and compare as well! I am here waiting to get your report! I'm so glad your back my sweet friend!
Grannax~you go girl! From a new kitchen remodel. To your new “she shed" I love gardens. I am awaiting some green thumb pictures. Maybe you have another hidden talent. Amongst your star qualities!!! Can't wait to see the finished product. Hammering can let out some anxiety huh? 😃 way to go!
Muddling~sitting with you and enjoying morning java... I brought krimpets. I hope you like them❤️ Thinking of you!
Minnie~I am sorry to hear of your constant pain in your hip. Do you have a palliative care group assigned to your case to monitor and manage this constant pain? They tweak and play with medications In a way others doctors cannot... are you a legalized medical marijuana country ? I wish I could help!!!!! Ugh pain is so annoying. I hope you're at least able to relax and rest when sleeping. Sleep is so important. I'm realizing that more and more for good blocks of time. For energy.
Philly~Hello and good morning. I hope you're feeling better today you special lady! There is nothing wrong with listening to your body. It is important to listen. It speaks to us. Cloudy Friday here. Okay time to leave for the onc visit. Much love to all!
Divine~ what’s up with your porch ?
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hello and happy Friday to everyone!
Thank you all for you support and love!
I am feeling better today - was a little tired earlier but I’m waking up now a bit! Work always energizes me, especially when I’m busy
I had a good deep therapy session this morning and I think it helped put some things in perspective around some relationships I am struggling with in my life...and I think maybe that’s why I was also feeling blue, aside from MBC...which again, is always on the mind.
Muddling how are you doing? Any updates? Sending lots of love your way!!!
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So my onc wants me to have a bronchosopy to determine whether the lymph node enlargement in my chest is cancer or sarcoidosis. So another procedure is forthcoming. I really like my new onc, so I’m trusting her to do whatever it takes to provide me with the best course of treatment. Should have it done within the next couple of weeks, so something fun to look forward to 😝.
Mel, hope your appt. went well.
Philly, so glad you are feeling better. I get into a funk sometimes, but I’m an optimist, so it usually doesn’t stick around too long.
Minnie, I have pain in both hips too, so let me know what you take for it. I’ve been taking Aleve, but it only works a bit.
Hope everyone has a good weekend.
Laurie
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Philly~Happy Friday to you as well. I've noticed my onc appointments are usually on a Friday. Weird. Today was nice out my onc appointment was good! He was going to forego the next three month blood drawl and start six month intervals, but I told him I kinda needed that check to keep me Inline. My mind tends to bend a lot when I worry. He was very optimistic and happy. Of course won't change the doseage or anything about my treatment because of the stability (thank goodness) that I've shown. So I hope to continue on the ibrance train for a lot longer.
Lynnwood~ wondering about you honey. Miss your sweet self here honey.
Booboo~Better safe than sorry I always say. I am confident that they are checking, knowledge helps sometimes. Which is why I chose the blood work three months instead of every six. Need that reassurance and double check. It's so difficult when you hear how well you're doing, but you really feel horrible. With fatigue and jumping pains everywhere and the need to sleep after functioning semi normally, for half of a day tops. I am so happy about the good report don't get me wrong at all. It's just you can never outrun cancer.
I ran into a neighbor last night while putting out some trash. She said 😮 look at your long hair , you must be cured!!! I was like 🤨 seriously ? Did you just really say that to me ? No I'll NEVER be cured. And no I'm not. Off of medicine. Never will be. “But you look so good, you don't look sick at all, don't cancer patients look all pale and skinny?" I was done talking so I just walked away. What an ass! Like I wanted to kick her in the shin and split! Dumb ass!!!! Get a clue or shut the heck up! I was so mad. When I came in, my dogs started to bark at me. I came in and said UGHH!!!!!!! PEOPLE!!!! Grrrrrrr!
Everyone have a good weekend! ❤️
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Sorry micmel, I assume your neighbor meant well but I know it can be frustrating. My hair is short but former coworkers even say I look so healthy and ask if I’m done and in remission. I “educate” them, whether they like it or not, lol.
In cabin building news, we have flooring, yay 😁
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Mae~It’s ok. She’s the neighborhood loon. Everyone hurries up when they see her coming. I mean everyone. Even the kids know to move it or lose it when she approaches.. its a shame but she needs to get a clue.
I love the cabin. Period. Adding flooring makes it so real! Yay! I would be so excited seeing it finally come togethern. Will you be there permanently? Ever!? Or just a summer /get away for you and your DH? (Sorry if you’ve mentioned that. I’m a little dense sometimes!).
Another lovely day on top! Hugs to all!
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Micmel,
I am so sorry for what you had to endure with your neighbor. I think it is fantastic you took the high road and walked away. Good for you!!!
I just went through an amazing situation with my own sister...she flew in from Maui to go to her lake condo 1 hr from my house...we met up and she treated me to a massage, wash and blow dry of my hair, an amazing dinner at a french restaurant and a night with her in a beautiful city hotel. She said she did this for an early birthday present for me because we may not be together during my b-day in 2 months. Sounds great right?
The next morning, however, was not so great...she proceeded to "educate" me that God has put this stage 4 cancer on me to make me a better person...that the Army treats me like dirt because they are an under resourced gov't agency and how can I expect them to care about anybody...that I need to care about the Army people who have been so horrible to me and not be so hard on them, as I have been very unfair to speak so candidly to them when I have been amazingly disgusted with them...on and on and on for about 1 hour.
I have never stood up to this sister before. Even tho she is younger than me, I have never felt I needed to put her in her place as much as I did this time. She is extremely judgmental and has never given me the full treatment like this before...
I did not exactly lose it with her but I did draw the line and said, "when you get a terminal cancer diagnosis as a result of malpractice, and live with that for 1 day, then come back to me and see if you still believe all these things you just said to me."
Of course she did not like this but she didn't understand what I was saying either.
I decided I had to compartmentalize and move on and go through the motions with her until I could conveniently get away from our "together time."
She acted like nothing bad was said and I tried to do the same. I was never so glad to drive away from her as I was this time.
She means well and truly believes she is helping me. UGH!!! She is not.
I decided in that moment to NEVER discuss any of my hard stuff with her again. It is meaningless and not worth the judgmental aftermath.
Gumdoctor
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On a happy, beautiful note, my front porch containers are filling out and bring me so much joy and satisfaction. I spend alot of time on my front porch enjoying it all.
This morning, I was able to dig in 2 of 6 pavers in the rose bed, weed and mulch them. My back could take no more today but I am so looking forward to continuing. I absolutely love this look. And it is so gratifying to know I am doing this myself. As physically challenging as it is, I am doing it in baby steps. And those are better than not even trying at all.
I can go to that dark place like many of us here. This gardening thing helps me to have something beautiful to focus on. I am so grateful to be living in this beautiful place
i did not feel angry at my sister in this place this morning. Yay!!!Gumdoctor
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Gumdoctor, honestly your sisters education really pisses me off! Full disclosure, I am not a believer but really, god did this to you and try being grateful for it, ha! 🤬 Ugh.
Has anyone seen “Then came you”? (Netflix) It co-stars maisie williams (Arya from GoT) as a girl with terminal cancer. There is a predictable sad ending but most of it it comedy, she’s got some funny things on her bucket list, it’s good for a laugh.
I’ve added more travel to mine, heading to Chicago in September to attend a 3 day music fest with BFF.
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Mae - Thank you for your support. I DO believe and I was upset!!! I have a very different belief in God than my sister does. I believe this is a relationship-changing event with my sister.
Sounds like so much fun, your cabin and your travels. I really admire your exceptional positive spirit and commitment to DOING.
Gumdoctor
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Gumdoctor, I understand how you did your best to keep the peace with sister till you could escape. I do that with some people, too. But OHMYGOD. My response to someone who'd try to tell me God put this effing cancer on me to make me a better person would be, first, to say, “Why do you believe in a God like THAT? A god that puts disease on people? MY God does not operate that way!" And I would ask if young children are given malignant brain tumors, leukemia, bone and other cancers because some mythical god is wanting them to be a better person? Or does this god only come after you once you turn 18?
And apparently sister (or her god) doesn't think you are good enough of a person just as you are. Because I would have had to ask her. I'm pretty sick and tired of the high and mighty people who try to transform cancer into “something good." Well, it's NOT. And can't people simply be good enough, and want to be good on their own without believing that the only reason they are good is because they fear the wrath of god? And if mbc is given to make a person be better, what the hell would this god's wrath be like? You know, people don't use their common sense. They go around claiming they believe in a loving god. Really? That's how you believe a loving god works? Well, that kind of god sucks!
I could rant some more, but I will give it a break. You are mature to compartmentalize her behavior, and yes, don't give her anymore of your health info. Plus she was a sneak to pamper you one day and then pounce on you the next.
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Btw, Gumdoctor, your potted flowers and flower garden look lovely. My hobby is also flower gardening and I always love seeing the floral designs of others!
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gumdoctor. I'm just flabbergasted that your sister said such nonsense to you. To put herself in a place of judgment as if God told her to say all that garbage. Disease is part of of life on earth, not a lesson in gratitude. What she said is not even biblical.
What I dislike most is the fact that she got you to this private weekend so she would have you as a captive audience to hear her revelation. That's deceptive.
She's still your sister and I'm sure you love her. I'm glad you said what you did but also agree she wasn't really listening. She may never get it. Sad I imagine future family gatherings will be tense. Stay strong.
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Divine - Thank you for your support. I did go on to tell her I did not accept the philosphy of the God I believe in doing this to me or anyone. I did make it clear to her I did not agree with her. I just did not explain everything that was said here. Sometimes I talk too much and/or write too much...
After I explained I did not agree, she told me to read the book of Job to understand it better...and then talk with her again about it after I read it...!!!!!#@#×++!!!%$
And thank you for noticing the gardening. I do so love it. So therapeutic. I think you can relate.
Gumdoctor
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Take her for a long walk to the top of this and then tell her to think about what she has Said to you ,and then find her own way home. (Btw this is japan) I'm so very sorry someone no less a family member would ever say such things. I don't know if I would ever trust being alone with her again. I'm sending you total support! I wish I could garden, Ive always had a black thumb and can’t be in the sun!
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Gumdoctor I'm still pretty new at all this but I'm finding that people say the oddest things. Some of them really hurtful from people I don't expect! OMG your sister - it sounds like she's saying "here would you please feel better about your getting cancer so that that *I* can feel better about your getting cancer?"
I had a little dip in my tumor markers after the first cycle of Ibrance I was feeling pretty good about. I WISH I had never told anyone. My brother said "wow that's like getting all A's on your report card". Ok no. And why did he have to say THAT! I'm not performing for anyone. I'm not trying to get good grades in cancer. There are no report cards. What's wrong with saying "hey that's some pretty good news, I sure hope that the markers keep going down"
Micmel, my neighbor told me last week that my cancer came back because I wasn't eating a whole foods-plant based diet. I was so hurt and angry. She's a cancer survivor and should know better. It is very unlike me to push back but I told her she was smug. Then I told her I used to feel smug about not getting cancer back for 24 years, until it came back and then I didn't feel so smug anymore. I'm certain I scared the sh*t out of her but that hurt me and upset me enough that when my MO called me a few days later about something unrelated I told her about it. She said "you didn't cause your cancer to come back". I knew this in my gut but it still feels shaky when someone says something they're so sure of and this vegetable lady was certain i'd caused my cancer to return.
We lost a lovely and young family member to cancer yesterday (multiple myeloma - she was just fifty) She and I have had so many loving and funny and wise conversations about atheism, our illnesses and our prognoses. It is hard for me to think of her as gone. She was so full of courage.
In happy news, it is piano recital weekend. My student are all prepared and ready to perform in two recitals tomorrow and Monday. Then I have three months to myself. No work. No students. Just warm weather, some doctors appointments, some scans and a lot of books and music. I can't garden this year - my back is just not in good shape. Hopefully next year. I love seeing pictures of your flowers. Micmel the rhododendron are almost done. Time for my absolute favorites - peonies. They're just starting to bloom. This means strawberries at the farmers market are also just around the corner. Wheee! I love summer.
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