My Husband, My Life, My Love, My Family, My Cancer
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Simone~ Good to see you! I think the Ibrance thread is more busy than our living room! It’s always good to see you my brother lives in AZ he also said the cases were rising in az. He is also concerned after his stroke. I’m sorry your trip won’t happen. 🌹 to you.
Tanya~hello dear. Always good to see you here and I am glad to hear the family is also doing well. I’m jealous that you guys may lunch again when the numbers start coming down. Florida just over took Pennsylvania in cases. Finally ours are dropping. I had a free birthday coupon from ulta. So I finally got to go Into a store and walk around and shop. I got A free mascara. Which retails for 16$. Not bad! Also got my DD birthday perfume, I’m shopping early this year. Don’t like being rushed. It’s not food for us MBCers.
Sondra~ I’m sorry you’re not feeling well today. Those days suck. I hope you were able to stay in bed and rest up. Hoping you’ll feel better tomorrow! Cancer sucks. No doubt. Up and down and up and down. Enough!
Mara~Glad the talk went well today. Sometimes misunderstandings occur and then you’re left with confusion. You did good resolving it! Well done !0 -
I don't know where to go with this. It's a cancer thing. A damn, dirty cancer thing that I thought was over. Wrong!
A man I know handed me his very personal biography. He has meticulously and painstakingly hand written over 200 pages of events and details in exact chronological order. He and his wife undertook an impossible task that they did not know was impossible until their lives and emotions were in ruins. His wife has since died and he was moved to record the unbelievable events of their lives, as a tribute to her. He asked me to proofread his book and give him honest feedback.
The feedback, and I was very reluctant to say it because I didn't want to hurt him, was that this was not a book. It was not a story. IT was a technical and remote list of events, many of which did not tie in together. There was no story here, just 200 pages of research. This was a court document, but not a story. The fact is that there IS a stroy in there, somewhere, a very interesting and tragic story. But it has to be teased out, wrapped up, spun into a shape, crafted into a thread, woven into a final product.
I wrote a short two page introduction of how I would start and build the story if it was my own (which it is not). I started with a quote he had written about the 70th page in, a quote that leapt out and stabbed me in the chest and I said, THAT is where this story starts, right here! I rattled of a two page start and read it to him. Tears welled up in his eyes and he said. "I want you to write my story. I want you to make the whole thing into something like what you just read me. I will pay you. Will you do it?'
And do you know what the very first thought in my head was? What if I die of cancer half way through?Fucking cancer! It's like mildew and nothing, not bleach, not lye, not nuclear waste will get rid of it forever. It's a mind pollutant. It's a vision killer. I thought I was OVER that. WRONG! The fear that I will be stopped short in the middle of something has stopped me from starting so many things. My life looks the same in so many ways except I am still mostly hog tied. Cancer keeps me on a short leash.
I am reluctant to take the task on because it is huge and I do not think in any way that I am the right person. It would be a huge committment. Way beyond my skill set and ability. But those were not my first thoughts. No. It was, what if I get cancer and can't finish? God I get tired of that. Back seat asshole can sit down and shut up !
Had to blurt this out where people would know what I'm talking about because until you're there, it's not something you can grasp.
Sorry I am not up to date on all the goings on, but trust that Mel has the bases covered. She always does! Hugs to all.0 -
Runor~ that is a big commitment and amazing at the same time, we’ve always said you’re our writer You’re not going anywhere anytime soon my darling friend. Think it over I think you’d be amazing At it and I believe he’s been put into your path for a reason. Just weigh the pros and Cons
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Runor, why the heck not? The time is now, if it ends part way through then that is what was meant to be. Let’s all plan for what is, not what if. You will be your own beautiful articulate self.0 -
Mollie~Welcome back! It's been a while since I've seen you here I hope everything in your life is going well as you and yours are managing well with This covid stuff. Always a seat for you here. Hugs to you!
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I’m dealing with insomnia yet again ladies. Ugh!!! Makes for a long day tomorrow! DH has to head back Out of town For a few days again and that sucks. I am so used to him being here with me. He makes me Dinner Every night and takes care of the dogs so I get a break with them. They are a lot of work Especially tag who has his back legs giving up. It won’t be long before I’ll loose my little buddy. Such a good dog he is Rescuing a dog is so fulfilling, we have given him a great loving life. I’m Just not ready to Give him up To the rainbow bridge yet. Not just yet. Good night ladies. Hope we sleep. 0 -
Molliefish,
Well said (plan for what is...).
Runor,
My only concern for you is whether you have time to take on a task that big. With all that you do on your farm, I know you are very busy. Of course the other side of the coin is whether or not you need a new challenge in your life. Like Mel said, do your pros and cons. My opinion? You really do have a writing talent, so why not use it and forget worrying about tomorrow. Best of luck for whatever you decide.
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Mel,
Insomnia sucks big time. So sorry you have to deal with that. I take gabapentin and Unisom every night, and that does it for me. I tried taking that sleep drug (can’t remember the name) but it made me too groggy so I stopped.
Wondering if your palliative care folks could help?
Hugs for you, my friend.
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Ok. I am sitting on Mel's couch, in Mel's living room, with a throw pillow on my lap. I need to speak to my girls.
I am tired. I am tired of hurting. I am tired of feeling blah. I am tired of the fatigue. I am tired of soaking with sweat from hot flashes. I am tired.
Yesterday I thought "What if I stopped the Letrozole and Ibrance". Well, of course, the cancer would grow. The cancer is stable now. Thank God. But at what cost. I feel so crappy. It cannot be the cancer--since my scans show good news. So it must be the meds. I will have times where it just washes over me--- woosh--- sweat pouring from every pore, kinda nauseous. Then the heavy fatigue. I get up from sitting and my knees hurt, my heels hurt. Is it the AI, or the untreated rheumatoid arthritis (doc refuses to give RA meds since on cancer meds).
Last night I didn't sleep. I have chronic back issues--way before the cancer came. Last night the back started screaming. And then, for the first time, my feet felt like they were on fire.
Today the feet feel ok again. And I am back to the same old complaints (see above).
I just wonder if I stopped the cancer meds, could I have some good feeling times before the cancer took ahold again? I am not going to stop the cancer meds--- I want to live. But it is just a tease for the brain--give up, just give up.
I need a hug. But alas, I am alone in MY living room again today.
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Candy,
Hugs out to you. I'm sorry that you are feeling this way.
Can I make a suggestion? Can you talk with your doc about perhaps switching up your AI? I was on letrozole from 2006-2019, and I had some very rough times on it. Also, I have some arthritis in my back and shoulders, and to me, that drug just exacerbated the arthritis. I had many days where I felt fine, but others where I couldn't walk a block without something bothering me. I managed to tough it out for all of those years, but it definitely affected me some days much more than others. (For some reason, the faslodex that I now get with my Ibrance doesn't seem quite as bad with SEs for me.)
Hope as the day goes on, you will feel better (both physically and emotionally). This is a tough disease, no question. We all have to take it one day at a time. That doesn't mean that it's easy...
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Candy~ you're not alone. Because I'm sitting with you. I just had some Ugly cries Last night wondering how long I really will be able to be like this. I feel like such a void of what I used to be. I battle each day and myself inside that day of what to do to feel like half a person even. I got some great new clothing. Do I wear them? Nope. Same sweat pants! I don't go anywhere. I sit and think about everything possible and I catastrophically put thoughts into my mind. It drives me looney. Honestly....I understand. Just wish we all lived in a community. Like this one. Together.
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Thanks BevJen. I may ask about change in AI. You know how it is. I hate to change when it is controlling the cancer and also fear what the next med may make me feel like. I have several things going on--- the untreated RA, the AI use, the chronic back issues (disc shot). All of it together is rough. Cannot point to knees and say RA or heels and say AI. All the discomfort just flows together.
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Candy, I am here to support you today my friend. I can empathize with how you are feeling and questioning taking some time off the meds to try and get back to where you were. Obviously I can't comment about the hormonal meds as I am HR negative but I agree with talking to your MO about a change in meds. Not sure if they can give a dose reduction or anything to ease things for you.
I might also suggest, unless you are already have something in place to get a social worker. I know from experience that dealing with everything on your own AND just plain feeling like emotional crap can make even more difficult to deal with what we are dealing with, not only cancer wise but real life issues or other conditions. I don't know if listening to meditative music on youtube for example would help. It did help me in 2015. Again, if you have already tried this my bad. Are there any virtual support groups, even if it is not cancer related but related to giving people more socializing with others who you do not know you. Kind of like here, except a video group. Sometimes talking in person helps.
I wish I could help you out of this morass you are in as I have been there as recently as a couple of days ago when I had a horrible misunderstanding with my friend and almost cut her out.
Hopefully your doc can suggest something and also get the back pain under control. Very gentle hugs coming from me. Let me know if there is anything else I can do for you.
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Thank you so much Mara. Living in the area I do, there are not a lot of options. No social workers at my cancer clinic. At the beginning of the diagnosis I checked into counselors in my area. Not many. None for cancer specifically. Mainly marital problems, depression, substance abuse issues. Also, to see a counselor/therapist would be $35.00-50.00 a visit out of pocket. So once a week would be up to $200 a month. I cannot afford that. No in person cancer support groups. I found you guys and you are a Godsent. You are my counselor and my support group. Free and in my own home.
Mara- Your appt today for MRI results???
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Candy, the MRI results are to be given to me over the phone. Supposed to get a call between 245 and 445. Working on keeping nerves at bay. I don't get full blown scanxiety but since the brain is the area that has had some progression in the past, I do have a little trepidation. I can't imagine not having to go in person if I had progression but I am still keeping it in the back of my brain. Just watching some videos I enjoy from youtube and chilling out. Thanks for asking.
As far as the above conversation, totally understand money being an issue as I live on disability myself. If you ever decide you would like some suggestions of free groups, let me know. Not going to overstep since you will find what works best, and ask if you want that information.
I will post my results of brain MRI once I have them so as not to leave everyone wondering.
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Candy, what a sad but perfectly articulate post you wrote. You describe so well life as it slips into being less and less great. As the hard things get more and more, bigger and bigger. Life is what we all want. But it seems there is a scale and slowly more and more bad things get added to one side and the scales tip. You can see the good things in life, way up there, on the other end of the scale while you are down here, mired in the bad things that have slowly tipped the scale in the bad direction. Then that question comes up. What an ugly question it is! AT WHAT PRICE? At what price does one continue to pursue life. Is the life left really worth it?
There was a time when none of us had these monster issues in our minds. We just LIVED. I can hardly remember those days, and I"m not even deep in the trenches like most everyone else here in the living room! Despite having each other to lean on, to vent to, I think the struggles and questions that haunt you now are a uniquely personal issue for each of us and no one can give us those answers. I wish to god there was someone who I could trust to swoop in from outside and assure me that they will tell me when enough is enough. That person has yet to arrive. The burden remains in our own hands often when we have the least amount of energy to address it.I think struggling with these questions now though, when you are clear of mind (despite being tired, sore and sick to death of it all) is wise. Very wise. This is not something that should be left for when the situation has become dire. My hope for you is that if you come to some conclusions about what your limits are, there will be enough upswings of the scale, enough pretty good days to balance out the truly dreadful and make being here worth it. Make continuing treatment worth it. Not easy, but overall the best decision. Until it no longer is. And that is something you and only you (sad patting you on the shoulder) can do. You will. You're dealing with it right now. No moss grows on this rolling stone!
Thank you ladies, living room loungers, for the story writing advice. I tapped out a few pages last night, combing through copious notes to piece together the few paragraphs I made. I see that in all these 200 pages the personal perspective is entirely left out. He recorded the facts. Just the facts. That is not a story. The STORY is always the personal. I am going to have to invent this on the fly, making huge leaps in assumption and imagination. This is going to take a TON of time, months of full time work and even then he might read it and say, no, no, that's not at all what we were thinking or feeling. But that is exactly what he will have to do if this story is to be in HIS voice and not mine. He will have to take any work I hand him and make the wrongness of it right. But at least there will be the rough shape of a story for him to work with. As it stands, he has nothing even close to that now. I think I'm going to take a stab at doing this, but it's going to be all consuming. At least spring clean up is done and my small garden is planted. We have some major building projects on the go that require my hands. But evenings are free. I wonder how far I will get before my brain experiences rigor mortis and quits working? We shall see.
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Candy - I think you and I were quite possibly crying at the same time today
I was so over it all last night as my knees and hips and heels and back and shoulders and everything just HURT. I went for a walk at lunch and it was pouring rain and a niggle in my back and by the time I got home I was in a lot of pain. I don't want to be achy like this anymore and its been a year since I injured my back (which turned out to be cancer). At any rate, I've added talking about the letrozole for the conversation next week as I think this brand in particular does not work for me.0 -
runor- I find it a huge compliment for you to say I articulated well. I do not feel I explain myself well at all. And you have a writers heart. I think about how I feel now, the scale now, and know this is just the tip of the iceberg. When things progress, I will feel much worse. More pain. Maybe ascites from the liver mets? Or who knows what complications. I feel I need to "buck up" at the aches and pains, the lost sleep now, because the worst is yet to come.
I hardly remember those JUST LIVED days too. I wish I had them back. I did not cherish them enough at the time. I guess no one does.
Sondra- I am hugging you right now.
I am up and moving around the house--doing laundry. As I sit here typing, my knees are throbbing and I am sweating (the air conditioner is on, house not hot just me). But I keep on keeping on. What else can I do. Maybe tonight I will be so tired I will sleep despite the pain.
Mara- Waiting to hear of your results.
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Candy,
I actually had this conversation with my MO, and I’ve been off all treatment since the beginning of May. I told her that if I had the choice between taking a drug that keeps me alive longer but makes me sick or taking no drugs but my quality of life is better (although shorter), I would prefer the latter. I am feeling so much better without the meds....almost like my old self. MO said the drugs would still be in my system for awhile anyway, so I’m very glad I made this decision. I plan to do this for as long as I can....take a drug and then give myself time off. For me, life is much more manageable and still worth living.
All the best to you as you navigate this issue.
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Booboo- So you are off ALL meds? Why did you stop your treatments? Side effects? Progression? The profiles can be so confusing. Looks like you are on Ibrance or Xeloda. I was thinking Piqray. Also I was thinking you had liver and bone mets, but profile says bone. That is great if you are off everything for QOL, but I would be too afraid of going off everything. My liver met was 8cm when we found it and aggressive. I would fear it would come back with a vengeance. How often do you scan?---- It is hard to keep up with everyone's story.
Well ladies, I haven't given up yet...... I got a gift of some money, so a few days ago I bought an end table, bookcase and a wooden filing cabinet from online. Not fancy. Put together kind. But, hey I wanted it. They came today. I am not going to tackle all at once, but I put together the end table. I got down on the floor (barely) and screwed the legs on and screwed the bottom shelf on. Took me an hour. Sweating and back and legs screaming. But I wasn't going to give up. So I still have some fight in me. And I want to live. I want my house to look good. Screw that, you damn cancer.
Mel- I was rereading today's posts- I think we posted at the same time and I skipped over yours. Yeah, a community for MBCers. Sounds good. We could help each other out. Help each other emotionally or physically---if 1 down and another doing ok. Good idea---our own gated community. You are on to something.
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Candy, love to hear the fight in you. Good for also getting somethings and building them for your place. It certainly can be difficult but once complete, give a sense of satisfaction and pride. Good for you.
I got the call about the MRI, it is NED, no mets. Any that had been there in 2018 are gone. My MRI was being done every 4 months, now it will be every 6 months. Will continue with my Herceptin and just keep going. I really need to take some of the good fortune and luck I have had and use that to remind myself that my cancer really has not been that bad and I am fortunate to still be here in mostly good health. Hope I can do that when depressive symptoms take over. I have been very lucky and fortunate to respond well to treatment.
My replace spin dryer arrived. Set it up where the other one was and am going to try it out now.
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Candy,
Yes, I am currently on no cancer drugs. Completely stopped everything for 3 months. My MO gets me. She knows I am not one who will tolerate feeling like crap just to add a few months to my life. My decision is not popular with most MOs. That’s why I took some time at the beginning of the year to interview a couple of different MOs to find the one I have now who understands that I would rather not live if I can’t have a good QOL. I stopped my current treatment (Abraxane) because of the Covid risk. My immune system is so bad that I would have no chance whatsoever if I got the virus.
Regarding treatments, none of the anti-hormonal drugs (Ibrance too) worked for me. I have the mutation which prevents those drugs from working. I may decide to try PIQRAY again to see if I can kickstart my system to allow those drugs to work. We’ll see. I stopped taking that drug because of how sick it made me.
I hope I’m not coming off as cocky, but I decided that I was going to dictate how this journey would play out, and not my MO. They really don’t understand our day to day lives. They pick a drug and hope for the best. It’s up to us, as individual MBC patients, to navigate our treatment options.
Lastly, I have bone only MBC, at least as far anyone can tell. Because I also have an autoimmune disease called Sarcoidosis, it’s very hard to tell whether cancer has spread to my lungs. Sarcoid and cancer look the same on scans.
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Mara ~ congratulations 🎊🎉🎈🍾 Mara. That’s so awesome. I am thrilled for you. Keep up your walking and self care. You’re doing amazing woman! Sending hugs ! Atta girl..
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Yay, Mara!!!! Great news!
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Candy ~I wish so much there was a place like that for us. After all, we really are the only ones who get it. Our care givers. Our families! Still sucks because you enter this work alone. ( usually) so you will leave it alone. I often Think we are like lights. Once the light is burned out, the switch is thrown and it’s all we ever know. I would love to think I get to see my family again. But fear so much I won’t. I’m not overally religious.
Mae~ you ok in there honey??
BooBoo~ I pulled myself off ibrance for three months. I was sick of it. There was so much accumulated, it didn’t even feel any different. The hormonals are what rip the joints apart. I hope you’re feeling great!
No wonder Mara is such a Walker!! You go girl.BevJen~hello to you as well. Missed you this mornings round. Posting at the same time. I’m sure. Hope you’re ok.
Sondra~ hello sweetheart hope you’re feeling better.
Runor~so good to see you! This project sounds just like something you would do ! Just be open an honest. Just like you always are ,.
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Candy, I hear your sadness and frustration. I’m glad you found some fight in yourself, but the low feeling (and the reasons for it) may be able to be lessened with some changes.
I agree with BevJen that maybe a change in your AI could help. I know you don’t want to change what’s working and I don’t either. But I often wonder if maybe my feet and knees wouldn’t hurt so much on something else (my MO offered exemestane) if I took the chance. I’ve resisted changing for the same reason you are, but maybe it’s time? Same for dosing schedule of Ibrance.
I know your expectations for help from your MO are not great but maybe your second opinion doc could help with talking to your rheumatologist or even looking at your big picture with the disc issue that you described today. (You’ve been stable, so why not surgery for QOL?)
I feel like this MBC has a pretty harsh mental effect, especially when combined with aches and pains that we have too. Your church job seemed like a good fit for you, too bad you can’t go back. Thinking of you and wishing I had better solutions that would make things better. 💕🌻💕🌻
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waving hello to Rosie! Good to see you tonight. Hope the day treated you well.
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Mara- Whoopie !!!!! So happy for you. And enjoy that new spin dryer!!!!
Boo- You do what is right for you. That is how I feel. No one has the right to judge. Sounds like you got a good MO that aligns with your feelings. My MO hesitates me being off Ibrance for any length of time (neutropenia issues I posted about in the Ibrance Thread). She said the cancer can gain a foothold any time off the med. So she would not be happy with me stopping treatment for an extended period of time (not that I want to). She seems to treat me like she would her early stagers---pushing for treatment. That is good I guess. She is not acting like I am terminal.
With bone only maybe you will be ok without treatment. I have a church friend that has bone only. She is on an AI and Xgeva, but not targeted therapy. She has been on the same AI and Xgeva all along. She is in year 9. We don't talk about her cancer much. She is very private about it. She never mentions aches. She stays very busy with her husband and her garden and never talks about feeling bad.
You are not cocky-- you are taking care of you. That is the way it should be.
I have heard of Sarcoidosis. Has your MO's ever said you would not be a candidate for immunotherapy since you have an autoimmune disorder? I have the rheumatoid arthritis, Sjogrens Syndrome, and Antiphospholipid Syndrome---all autoimmune and my MO commented one time that I could not do immunotherapy for the cancer due to this.
Rosie- Good idea about the other MO maybe helping with the rheumatologist issues. I hadn't thought of that. I was just thinking of when progression happens and what the second opinion MO would say at that time. Not that she could help with issues I have now with coordinating the docs in my care to help my pain issues. That is a thought...
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Thanks everyone, I appreciate it! I am definitely grateful for my results. I can only hope to stay this healthy for as long as possible.
I did order in a burger dinner to celebrate my good news. That tasted good.
I am very happy to have a bigger spin dryer to do my blankets in again. Nice to have the option again. This one has a warranty I purchased.
Laurie, I can tell you from experience how good a treatment break feels, gives the body a chance to come back to more of what is normal. I had to have a treatment break for about 6 weeks or so when I was having fecal incontinence. Was taken off Perjeta but kept the Herceptin and found that digestive enzymes took care of all of my digestive issues, to the point that food I was intolerant to became safe to eat. We all need a break every once in a while. In Canada, it is not quite as simple to declare a treatment break due to the provincial government but my MO is pretty creative in her notes so that if a person needs one, they usually can take treatment breaks.
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Very happy for you Mara!!
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