My Husband, My Life, My Love, My Family, My Cancer
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I will find out the MRI results next Thursday, walked to the hospital and took bus home, home by 830.
I discovered a new thing that was enjoyable and could go for another meal option as well. I took a cup of corn flakes, added steak and italian seasonings along with a bit of salt. Added a sprinkle of wheat bran for fibre and peanut powder for extra protein, good source of iron. I then added tostitos queso as well, heated for 30 seconds in the microwave and loved it. Very close to tortilla and queso for me which I used to snack on a lot, but this offers more nutrition. Yummy.
Living, my wash day is really easy, mostly just the microfiber cloths I constantly use for mutliple purposes in a tiny portable washer and beside that machine, I fill a 5 gallon bucket part way and do clothes at the same time, spin everything together. Have got a decent bathtub plug so blanket day will be in the tub with the same laundry cycles as the machine wash and a washing wand, used to bringing in the bigger spinner on the stepbench and loading the blankets in there. If in the tub, no chance of leaks. It was just a matter of getting used to it. At some point, I will figure out best place to add an automatic washer that hooks up to the kitchen sink that will wash and spin things out for me. We will see, It would take planning and rearranging of stuff. I honestly love doing laundry, combining the dry ingredients which are the oxiclean, washing soda, Tide and grated laundry soap bars together into a large container, the little scoop ensures it lasts a LONG time. I am a geek.
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hello ladies. I hope everyone is doing well this evening. I can't believe summer is over already it's amazing how fast time flys. I don't like winter so I hope we get a long fall. I love fall. All the smells and pies and apples, Candy corn and the beautiful leaves 🍁. My favorite time of year. Sweatshirt and sweat pants season. Oh yeah bring it on. I hope insomnia won't be on the table tonight when I go to bed. Yuck. Hope everyone is doing the best they can.I amAvailable for any pocket duty. Thanks Mara for the pocket duty for my sister. She gets her port tomorrow…. Soooo there's that. Sweet dreams ladies ….
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Mel - also in pockets for you and your sister tomorrow. I'm glad she has you and her coworkers to support her.
Mara - Tostitos Queso is one of my favorite things! I don't let myself buy it very often because it's too easy for me to live on chips and queso.
Booboo1- I'm sorry about your news but can completely understand where you are coming from on treatment. You do you and may you have many more good times with family ahead. I continue to pray for you and all of us on this thread.
Runor - I think you bring up good points that echo the thoughts I have too. I completely agree, science, despite what we are being told a lot, is not a sure thing. What we knew then may not be what we know now. That's the whole point of questioning the status quo, hypotheses and clinical testing, right? Tamoxifen is hell and kudos to anyone who can tolerate it for 5-10 years. I think if regrets are a thing I look back and wish I had stayed the course. I lasted about 4 months before I completely lost my mind and my body started going off the rails and I quit. You have my total empathy. You need to do what you feel right about, at the very least it's worth more research.
I got denied approval to go back to work this week. My RO ordered an MRI of my brain which is on 9/12 and my PCP is doing a battery of blood work. I've been having worsening brain fog, memory lapses and word finding. If I have been sitting or lying and go to stand up within a minute of standing I have been getting horrendous pressure in my head and eyes, like both might explode. Sometimes I'm off balance but mostly it's just amazing head pressure. I've done orthostatic BPs and my blood pressure is mildly elevated to very elevated during those moments. So my PCP is ordering cortisol, cardiac bloodwork, and a thyroid panel workup just to check. I managed to gain 10 pounds this month which is faster than I have ever gained weight. I'm living in athleisure because almost nothing else fits right now. I'm not absolving myself of poor dietary choices either so I have completely cut out added salt and am cutting calories, sodium and simple sugars to try and remedy the damage. They both seemed alarmed that I gained that much that fast. I have my standard 4 month chest/abdomen/pelvis CT on 9/20 so we'll have a lot of info on hand this month. I just want to feel better. I was doing okay for a while and then the last few weeks this just sidelined me.
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Just checking in here quick - still in the dumps and struggling although I think most of this is driven by a lot of anxiety over the unknown. My job is typically highly ambiguous which can be contained to an extent and you just gotta ride the choppy waves in the middle of a project when things are uncertain. Coupled with enormous economic/social/political pressure going on and feeling completely unvalued, unrecognized and unsupported, its been really really tough going the last two months or so and Ive got another 10 weeks to go yet.
We did book tickets to go home at Thanksgiving (leaving the day this project is delivered), I have some other things to look forward to between now and then, and we are otherwise in ok shape, so I try to look on the positive side. But the other morning I woke up and for the first time thought damn, I don't want to work anymore.
Candy - my CT was moved again to Sept 15 as scheduling got all messed up. Thankfully this time I got booked into the Fancy New Building, where I had planning scans last fall and you get tea/coffee in a china cup after :P
Laurie - I was sad to see you have painful progression, but I know that you are strong and passionate in your faith and path and will enjoy all the time you have left with your family (and the freedom from scans and pokes!). Take care of yourself!
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Sondra, I hear you on the chips. I don't buy those myself. I know I will eat the whole thing. Corn flakes made a great substitute for me.
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Laurie - I’m so sorry that this damn disease has given you progression🤬🤬. I know your faith is strong and will carry you through the path you’ve chosen.
Emac - I hope you can get answers to your worrisome issues.
This discussion of HRT makes me wonder how things could have been different. Originally dx at 34 w/bc, I had my ovaries removed at 35 due to the strong ER+ and PR+ nature of my BC. Adding onto that was 5 years of Tamoxifen. So at 67 I feel like I’m 87. I wonder if any of that contributed to the rapid development of osteoarthritis? Especially since the anastrozole was added in 3 years ago and it’s been during this time that literally all my joints became bone on bone. And then the sex….I think all desire went out the window after my ovaries were gone. To me sex has been a chore. And it still pisses me off that my husband, a retired ob/gyn, doesn’t get my lack of desire🤬🤬🤬🤬. But it’s just something I put up with. And after 44 years of marriage, things become status quo.
Mel - prayers for your sister. It must be gut wrenching to see her face her cancer. How old are her children? Maybe as their aunt you can knock some sense into them …. or not.
So my daughter who will turn 36 tomorrow gave me a kick in the stomach. On Tuesday she invited me over to have a glass of wine to celebrate. She wouldn’t say what and in my mind I’m thinking of all these possibilities. So I head over and we sit down with our glasses and I start rattling off all my ideas - job promotion, hubby’s job, a new golden puppy, family being featured in a local magazine….and it was none of these things. Then I remembered she had a breast MRI earlier in August. (Because of my cancer history her GYN is very proactive in screening. She has my daughter alternate a mammogram and breast MRI every six months, due to the fact that breast tissue at that age is very dense). And so I asked if we were celebrating her MRI results, which we were except for the fact that the MRI came back with a suspicious area, requiring her to go through a 90 minute breast biopsy done under a type of fluoroscopy. She said it was pure torture. Thank God the biopsy was negative! But our daughter kept all this to herself figuring there was no sense have everyone worrying until we knew if there was something to worry about. So we had a long discussion about her choice to not share (she hadn’t even told her hubs!). While I accept her decision, I also told her the value of at least telling me, promising to keep it between the 2 of us. She said she can’t imagine going through this all the time (I gently reminded her about how many of us do scans every 3 months!) and is ready to cut everything off. She plans to pursue genetic testing hoping to give her some answers. Our older daughter did genetic testing and nothing came back as a problem. What a horrible burden we have given our children. I hate cancer!!!!!
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Mel, im with you and your sister during this awful time, I hope her treatment is successful and not too hard on her and hopefully her kids will step up for her. Laurie, I hope they can at least control the pain for you and make you comfortable.
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Goldens~good to see you. Glad everything was negative for your daughter!!!! Boy do I understand. My sisters children are a story longer than any of us have. Basically, it's three non functioning adults who suck the life out of everything they touch. They have no respect for anything. They are not reliable. Some estrangement is forming. Especially since their behavior since diagnosis. It's frustrating to be helpless. They would probably forget to pick her up from her surgery today. She's getting her port put in. I know she’s scared. She told me. Breaks my heart. Wish she lived closer.
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emac, I’m sorry you’re dealing with so much uncertainty but the symptoms don’t sound like typical brain mets, hopefully the cause is benign and easily treatable.
Sondra, I wish you weren’t feeling this way but a thanksgiving trip is something nice to look forward to.
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Emac~having symptoms we don’t know what are would bother anyone. Sounds like Mae knows what she’s talking about. Through experience. I will keep you in my thoughts.
Sondra~sometimes thanksgiving is my Favorite holiday. A nice meal, people around you love. I am also looking forward to all of that. I am sending you a hug.
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mae - Thank you. That helps. I just had a brain MRI in January and I told my RO that but he wants to be thorough I guess. I'm more suspicious of high blood pressure.
Sondraf - I'm sorry work is so rough. I'm struggling in my job. Having been off for radiation therapy and not feeling well I can relate to the thought that I just don't want to go back to work. I hope the next few months go quickly for you and you can enjoy Thanksgiving.
Goldens - I thought the HRT discussion was interesting too. I didn't know you were diagnosed so young. I was first diagnosed at 41 and everything essentially stopped at that point. I am 45 now but feel much older most of the time. And off topic, I would so love a dog. I am considering getting a golden once I get my fence fixed and make sure I have the time and resources to take care of one. I grew up with a 1/2 golden and he was one of the best dogs I've ever known. I still miss him.
Mel - Thinking of you and your sister. I hope she gets the support she needs today and that surgery goes well.
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my sister had a complication during her port surgery and ended up being admitted for a blood transfusion overnight. She starts chemo tomorrow. If they put her port in today and are starting chemo immediately tomorrow with no healing time. It must be in an advanced stage. I’m so worried. I feel helpless. I don’t know which is worse. Going through it or watching someone you love deal with. Cancer just plain blows. Please send good thoughts. If you can spare any.
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Mel, Good question about which is worse, being the patient or being someone who loves the patient. They’re both bad, but in different ways. We here know the patient side, some of us also know the loved one side. Anyway, yes, certainly sending my best healing energy for your sister, and supportive energy for you. You’re not kidding that all of this sucks,
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Mel- sitting with you, sending healing thoughts to you sister. Cancer just sucks, no matter which perspective you're stuck with.
Booboo - sorry for your progression. We're all just hoping against hope that things will be better than expected. No one should question your decision. I just wish the radiation was easier/closer/more practical to relieve some of the pain and give you better QOL with your family.
Emac - in your pocket for upcoming tests. I hope they can identify and resolve whatever is causing your problems.
Please add my friend, Carol, to your prayers. She had a stroke caused by clots from her radiation treatments for lung cancer. Miraculously, she's doing better, but still has a rough road ahead. One of the sweetest ladies you'd ever know.
Candy - howcis your dad doing? Have you been able to settle into a routine, like you wanted?
Waving to Mara, Mae, LivingIVLife, Goldens and everyone else in the living room.
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Mel - sending prayers up for your sister. I am so sorry she is having to go through so much.
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Thinking of you all.
My Dad died Thursday night.
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Mel,I can tell you from experience that it I would rather have been the one suffering instead of Mom. We both had cancer, I still had nursing and social worker visits and she was sick too. Caring for and about someone suffering is worse feeling to me. Prayers and thoughts go out you and your sister.
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Candy, I am sorry for the loss of your Dad. I hope you can find comfort in memories you shared. I know this is a difficult time for you, and I wish comfort and peace for you and your family. I am sending up prayers for you. (((Hugs)))
Lynn
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Mel, I am sorry your sister had a complication during port surgery. I don’t think you should read too much into the fact that they want to start chemo so soon after she got her port. It’s been a while since she was originally diagnosed, so they probably just want to start treatment as soon as possible to bring things under control. Many people have long delays, so it is a blessing that she won’t have to wait too long. I agree with Mara. I think it is harder to be the caregiver or loved one of someone who is sick rather than the patient. As a patient, I know how I feel. I know what’s going on with me. I feel a certain amount of control over my own situation. When my dh had cancer, I felt helpless. All I wanted to do I was make him better, to take that mythical magic wand and heal him. I needed to know everything. I read, read, read, asked tons of questions. I worried, cried, prayed, but I felt I had no control over anything. That is not to say that being the patient is easy. We all know that it’s no picnic.
Hugs and prayers from, l
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Candy - I am so sorry for your loss. Losing a parent is so difficult, no matter the circumstance. Praying for peace and strength for you as you deal with everything that must be done. Sending a hug your way.
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Mel, I wrote a long post to you, but it disappeared. Grrr. I am sorry that your sister had complications during her port surgery. I hope she has recovered. I wouldn’t read too much into the fact that they want to start chemo so soon after she got her port. It has been a while since she was originally diagnosed, and they probably want to get things under control as soon as possible. Many people have long delays before they start treatment. That can be worrisome and scary.
I have to agree with Mara. I think it is more difficult to be the patient’s caregiver or loved one than the patient. When my dh was going through his cancer treatment, I was constantly worried and frightened. I felt I had no control over the situation. I didn’t like to see him suffer. I wanted to take that mystical magic wand and heal him. All I could do was read to educate myself, ask lots of questions, and pray. I felthelpless. As a patient, I know how I feel. I can direct some of my treatments. I have some sense of control.
I hope things go smoothly from now on. I am sure your sister appreciates your support. Don’t neglect your own health.
Hugs and prayers from, Lynne
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Mel, I’m sending prayers for your sister and sending you warm hugs.
Candy, I’m sorry for the loss of your dad. I’m sending you hugs as well.
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Candy- It is so difficult losing a parent no matter at what age. My thoughts are with you as you go through this difficult time.
Mel- sending healing thoughts and prayers to your sister as she deals with these complications and this disease
Seeq- also sending healing thoughts and prayers for your close friend
Emac- I'm sorry you are going through so much pain. Hopefully the upcoming scans will show what is truly going on. I know when my neck is stiff or in pain from stress the pressure goes from my back right up through my head causing headaches etc
Which is worse- having cancer or watching someone you love go through it? For me when my father had cancer I wanted to take the pain away and yes wave that magic wand to make it better . The same as my best friend although we both went through it together. She was in the last stages and died leaving me hopeless and in deep despair. That was 20 years ago and I will always carry with me those last precious moments spent with her. My dad passed away 45 years ago when I was very young . 💔
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Candy, I'm sorry for the loss of your Dad. No matter when you lose a parent, it's too soon.
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Mel - I'm sorry to hear your sister had a complication. Will be sending you both all the positive vibes. It's a hard call patient vs. support person. For me personally I feel like I have no control and feel helpless when my loved ones are sick and that's harder than getting through my own struggles. I think someone may have mentioned this but I would second getting an administrator for the GoFund me and maybe have your sister okay giving the money to you for safe keeping, that way you can protect it for her?
Seeq - absolutely will pray for Carol also.
Candy678- I am sorry to hear about your dad. You have had more than your fair share this last year. Thinking of you and praying for you also through all of this.
Thank you all for the support. I hate to complain too much, we all have our struggles. Sometimes I just get frustrated and don't know where else to express it. My labs came back normal so it looks like heart, thyroid and cortisol is all good. I am trying to make myself stay moving every day, even when I don't feel like it. We are flanked on two sides right now by large fires (Mill fire in CA and the Rum Creek and Cedar Creek fires to the north). They are all over 16K acres right now. I'm okay, not at risk, but the smoke is pretty thick and hard to breathe in so I have been going to the gym and staying in where the air is filtered, to say nothing of the heat. Pumpkin spice everything season is on all the store shelves now so I am really looking forward to Fall.
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Hi Everyone,
I’ve been only sporadically checking BCO. There seems to have been so many losses lately which are weighing heavily on me. It took me forever to catch up and now I’m saddened to hear that so many of you are going through tough times. Candy, my condolences on your father. I lost my dad on 1986 when he was just 63 (it’s silly but I have hoped I would make it past that age but it’s looking increasingly unlikely).
Mel, I’m so sorry about your sister. It has to be doubly difficult for you as you know intimately the tough road ahead for her. Sending a virtual hug.
Emac, I’m sorry also to hear about your symptoms. I hope they can get to the bottom of it soon and that it is completely unrelated to cancer.
Laurie, I’m saddened to hear that you have progression but understand completely why you might choose to limit treatment. This crappy disease is exhausting. I’ve had days lately when I have just felt plain tired. Tired of appointments, tired of side effects, tired of the ongoing issues from the cancer….
I’m a bit at sea at the moment. I spoke to my MO last week and at that time he was suggesting that if my tumour markers plateaued we would likely stop Xeloda as it likely wasn’t helping and, given the negative impact on my marrow, would just drag me down. I was okay thinking it was akin to being stable. Unfortunately my CT scan on Wednesday showed progression in the liver so Xeloda is failing. (Not really surprised as I have been having trouble with my right arm/hand - numbness from spinal mets - and over the last week or so have had increased discomfort in my right flank.) Getting worried as my cancer doesn’t seem to respond well to chemo and I am now endocrine resistant. Options are pretty limited at this point. Eek! I expect to speak to my MO early next week to discuss what’s next. Fingers crossed that he has a few more tricks up his sleeve.
Sorry if I missed anyone. Take care all.
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I'm so sorry Candy, sending you all my love and strength during this very difficult time.
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Candy - deepest condolences on the loss of your father. May herest in the angels arms. What a difficult time for you. Prayers and hugs.
Sadiesservant - so sorry about failed treatment. I hate that cancer is testing so many sisters on this board. It is a silent robber.
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Candy~ I am so sorry. For your loss of your father. At least you know you were visiting him and spending the time you were able to. I am wrapping you in a big hug. I know it isn’t easy. I lost mine two years ago 2019. I think of him everyday. I’m so sorr
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Candy, I'm so sorry to hear about your dad. It's so sad to lose a parent. I'm sorry I don't have better words...
mel, I'm sorry to hear about your sister. That feeling of helplessness is so awful. I think it's a wee bit easier on us to be on the side of having the disease than to watch someone we love suffer - especially when we can't be with them.
I'm sorry for those here with progression, or fear of progression. This disease does totally suck!
Love to all,
Carol
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