My Husband, My Life, My Love, My Family, My Cancer
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Thank you, goldens.
runor, I'm sorry you're hurting. Family "hurts" can be so hard!
Candy, thank you for keeping track of our appointments.
Happy Sunday to all who are hanging out in Mel's living room.
Carol
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Candy - I can't imagine just taking the meds prescribed and not asking questions. My situation is different with my PCP. She was an ICU nurse for a long time before finishing her NP and she and I worked together for several years so there is a blurred professional/personal relationship there and we discuss treatments. My MO is different. He's very nice but he says "oh, uh huh" a lot. Like at the end of every one of my sentences which makes me a little more anxious with him. Even so, I will ask for his opinion and also bring up my own questions. He and his PA have been very open to that. I think one of my regrets early on was not doing axial radiation and stopping Tamoxifen early because I was afraid of the lung damage and Tamoxifen made me crazy. My treatment team allowed me to drive that bus and sometimes I think I drove it off the cliff. But here I am so...I try to listen more than talk now. Even so, I do voice my concerns and then do the research on their suggestions. It's just what we do, right?
I didn't see Runor's post but I can agree with the comments to kids and parents. My brother is still being a putz. He's an addict and doing what addicts do, think of themselves first and foremost and it has hurt my parents. He is just entitled and disrespectful and it makes me so mad because my folks have been amazing to both of us. I think my parents are disappointed that I never married or had kids but like Mae, I knew early on that wasn't going to be my jam. I don't dislike kids, I just don't want my own. I totally agree with the freedom to move around and pursue career goals or life goals. I don't think that's a bad thing. I may at one point have been open to marriage but I'm very independent and I do very well on my own and I have several really good friendships so I don't feel overly lonely. Sometimes it would be nice to have more help on my bad days but I make it work.
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I had a thought today I think we can all relate to. It's like we blinked, and a chunk of life went by. No matter how long we've had cancer. There was always a pre cancer. Time. A time where we just lived. I thought today what would I be doing ? I had already issues with my lung and arm so I was not working. But I was really focusing on myself. Making myself what I thought was healthier living working out I never drank. Barely smoked I can't connect the dots where I went wrong . No family history just questions. I no longer know who I was and now I no longer know who I will be. I just know that I dont like now, I should be thankful for 6 years stable That leaves you wanting no limits . I don't like the worry of wonder why the future is so cloudy with unknown time frames. Friends I've lost to overdoses . Accidents … cancer. —Accident. No one wants that to happen. Living a slow life of not knowing what everyday is going to be bringing. Then my kids enter my mind and it becomes a grief huge issue. Every day I still calf believe I have cancer. Still. So much has been lost for us all. I'm so very sorry we have this to live through. You're all very special.
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Mel, I’ve been quiet lately because I haven’t been my usual self. I am very fatigued, having more pain, and some depression. I’m not liking it at all. I can relate to how you’re feeling, as I’m sure many can. I don’t think any of us caused this shit storm to happen. It’s the never knowing why or how that sucks.
Thank you to those who have acknowledged me by saying hi. I’m here and reading every day and thinking of you all.
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hugs kbl 🤗
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Moth, thank you so much. I’ve been thinking about you and looking for your posts. I am sending a big hug right back to you.
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KBL ~must be the way we are all feeling. I haven't been myself either. Don't know why it's so hard to just accept the hands dealt. It just is.
Moth~Thinking of you.
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Mel, I noticed that you still sometimes wonder what you did to cause bad things to happen to you, particularly MBC. I will never forget the words that the breast surgeon said to me during my very first visit. She said that none of this is my fault. There is nothing that I did or didn’t do to cause cancer to invade my body. It was an eye-opening conversation and I took her words to heart. When I had my first visit with my MO, he asked questions about things that would make me more prone to bc. Like you, I had none of them. He looked me in the eye and told me that the biggest risk cancer for bc is being female, and I had no control over that. I like being female, so I have no regrets about that. Lol. Most people have dreams and thoughts about what they want to do and how they want to live their lives. Life has a way of getting in the way of those plans, and the results can be good ir bad. We were thrown way off course, and we have had to deal with the results. I hope you see your way through the feelings you are experiencing right now. ((Hugs))
Runor, I know that you deleted your message, so I won’t include any specific details here. I just want you to know that I am sorry you are experiencing what you are going through. I can’t help wondering why your daughter even told you about her decision and plans. I am sure she knew what your reaction would be. She could have moved ahead without telling you, and planned well, you never would have known about it. My observation is that we tend to hurt people we love more than simple acquaintances, family more than friends. I think it is because deep down we know that family will alway be family and will always be there (well, not forever, of course) We take family for granted and lash out at them unjustly. Most of us outgrow such tendencies as we mature, but not all of us. I hope the sting goes away soon and you and your daughter can move past it.
Last week I reached 7 years since my mbc diagnosis. Time has flown by. That makes me nervous because it’s moving way too fast. I have some very good memories from those 7 years. I have sad ones, too, of course. Although I wanted to live many years past Dx, I had my doubts that I would make it longer than a couple of years. I have been through more than a dozen treatments, and I am grateful that there were so many out there. Some of you on this thread have had good luck with your fist line of treatment and have stayed on it for several years. It warms my heart to see that. I hope you all find the treatment that works well for a long time without bad SEs.
I know that I have not commented to many of your posts, but I have read them all. This is already too long.l, so I have to end it now
Hugs and prayers from, Lynne
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50's~ may you get many many many more years…. I do wonder what I've done from time to time. Nothing makes sense since it's happened. Not fair to anyone. Just plain sucks. Anyway….you wrap it. The inside the wrap is still the same. We just trudge along .
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50's, we are both at seven years with this disease, though some of my experience health wise was not easy, I am over all feeling lucky that I have been stable in my body and brain most of the time. I try not to look back on the worst parts which were the initial fear, being officially told I had a 10 cm met and all the brain radiation stuff. The brain surgery was the easiest part of that except for fracturing my feet walking circles around the hospital halls listening to music.
KBL, I am so sorry for the pain you are dealing with now, it is no wonder you are not yourself, in your pocket with a purring cat to heal that pain as soon as possible. Hope you get relief soon.
Mae, re masking and hospitals, although the requirement has been dropped, I don't believe my hospital will drop those requirements with in patient cancer patients, out patient cancer centre etc. Even if they did, I would continue to wear the surgical masks, think the N95 one would be hard to breathe through. Any indoor public space I am masked. Have not been to a restaurant once I decided I did not like my burger joint food. A movie is different to me though will still mask on the way out.
Candy, when I was still dealing with dizziness which I always knew to be related to my previous anemia pre beans in the diet, my neuro onc wanted me on more anti seizure which to this day I really don't believe I need as I am not epileptic and only had seizures when my brain swelled as brain met grew. I am stubborn when it comes to drugs. I said NO firmly and have always kept the same amount of tegretol. Any slight increase led to more lightheaded and fatigue. I fought both my PCP and cancer clinic. Depression meds were prescribed and I nixed that as well. You have to be comfortable taking what you take.
I actually woke up today deciding to go to the mall, going to use it as a walk session. Walk from bus, inside mall, through Walmart back out and to the bus. I have a tiny budget of 10.00 whether is spent on groceries or something else. Don't honestly need much but possibly rice or a treat.
Breakfast, baked beans til they are crispy, beefless ground, sprinkle of cheese, microwave ground and cheese with spinach in the microwave 60 seconds and combine, should taste good and not too filling. I put wheat bran, always for fibre and mixed 2tbsp mayo and two teaspoons of the caesar dressing together to hold everything together. Thinking when it comes to making these sort of creamy sauces, I would have the most success with combining with mayo, be it ketchup, dry seasonings, queso or onion chip dip which is too intense by itself. Will probably have some eggs with 1/4 cup beans, baked again as well with some sort of seasoning and supper usually winds up to be an english muffin with butter and peanut butter. That keeps me out of the peanut butter jar and calling that a meal.
I am also proud to say that over two weeks ago, I bought a bag of chocolate balls, mint chocolate at Lindt and got 100 of them. Anyone who knows me knows I am a fiend for chocolate and limit what I buy but I am proud to say, I still have quite a few left and have been disciplined enough to eat at most 3 a day, 1 after a meal. Trying to make it so I can start keeping cookies or stuff around the house as well without eating an entire row.
I am also trying to save my microwave from the tea staining from boiling from the walls. Trying out something I saw on youtube, took some oxiclean powder and wash soda. Made the best paste I could and smeared it on the walls, will leave it there for another wipedown when I get home. Might also blast the inside with steam to hopefully help loosen it. I do wipe all the time but obviously not religious enough. There is no food, just tea.
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Thank you, Mara! Hugs
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I am feeling a little bit better. There's still a huge unknown issue about whether my liver gets well enough & my cancer stays under control. If both aren't in schedule, it is end of treatment I guess. But my liver plan is being really worked hard by my caregivers so we're hoping. I tried to read fair bit on weekends & today I can write I think?! My liver caused head issues & I was very confused and fatigued but now have more ability to focus.
I'm still sad and angry. There's not a lot of time for most mbc & I'm frustrated about how much its outcomes gets ignored. Cry lots.
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moth: I was really happy to see you post and that you are doing better today. Is your liver rallying at all?
mara: I clean my microwave this way: cut up a lemon, or a chunk of leftover lemon, put it in a microwavable bowl with water. Bring it to a rolling boil. Open the door, wipe down the steam and loosened crud, close the door and give it another blast. Repeat until tomato spatters, bits of this and that are gone. If you don't have a lemon I found a splash of vinegar in the water works too. I like the smell of lemons though.
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Moth, I am glad there are so many people working on your treatment and care, of course you need it. I am always in your pocket and think of you often, follow the blog and instagram which is under my mara51506 and may also show my real life name Catherine. I hope your liver heals up enough for another treatment or option to come up.
I did somehow convince myself to go out, I am really lazy. Took the bus to the mall. Walks to and from bus stop plus the indoor walking to get to Walmart provide decent steps. I am still unwilling to walk very far, hospital is it. My face is very red as I did get warm, we're humid here but I was not overheated. Think if I did decide to go on a longer walk, would bring my walker so I could sit if I needed it but walking mostly inside did not require that and the bus was nice and cool. Get off at the front now since it will lower. Last time I got off the back of the bus, my leg almost went out from under me.
I bought a beef pie so will cook that, cut in half and then add baked beans and spinach after. We will see how it tastes.
Edited to add, found out that you cannot make a paste out of oxiclean type products and baking soda. They dried to become very hard and it was hard to get out of the microwave. I will live with the tea stains and just let the tea sit in the microwave to allow the steam to fill and go back to wiping it every night. I was doing that but got lazy and only wiped food splats out. I am just going to microwave one of my pasta dishes and call it a night, surprising how tiring getting stuck on stuff in the microwave off and then sweeping it up off the floor. Not going to take youtube that seriously. If I want to sort of wash the microwave, would be better off to take an actual soap on a wet cloth, wash it out and then rinse and dry as well.
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Moth so glad to see you feel up to posting. I read your blog and was hanging on your words. Hugs.
KBL sorry to hear you weren’t feeling well. I tried to logon today but something was up with my connection.
candy thanks for keeping appt pocket duty lists.I went out twice yesterday. Lunch with a friend and then ice cream with my brother and step mom. Cold stone is so delicious. I allowed myself the smallest cup. Then we went in the roof of usf parking lot to watch sunset. When I mentioned that to my GD she said lucky it’s summertime and students aren’t on campus bc that’s the hangout. It’s a really great view.
Mel beef pie sounds really hearty wow
Mel on ibrance website someone posted an article on ibrance updates.
Waving hello to all.
Tanya
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I just found out they are recommending fulvestrant and alpelisib (Piqray). Even though the ovarian were we're ER-, the mets seem to be somewhat indolent (ER+ in bone) and believed to be heterogenous. I will like have scan 8 weeks after starting the fulvestrant and alpelisib.
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I have been reading along, but sometimes just do not know what to say.
Hi. To all on here. I love you all and read everything you post, even if I do not respond to each one.
Mel and kbl- I am sorry you are struggling.
Moth- My thoughts are with you.
I have been posting on the Clinical Trials Thread about my questions for my MO and rheumatologist and my frustrations. I am trying to live "in the moment" and trying to chill out. I get lonely living alone and not doing much, but I am grateful that the cancer is stable for now. So many with big issues. And wondering when my time will come for more cancer issues. I have been dreaming a lot about my Mom that I lost 9 years ago (wow, 9 years) and my sister I lost last summer. Sometimes I can go down the hole of depression. I have to fight every day to keep out of that hole.
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I know everyone here has their struggles. This is difficult to live through. I get Xgeva tomorrow and I hate it. Don’t even want to go already late since I wasn’t feeling too good. Just a calendar watcher I’ve become. Waiting for days I can’t cancel appts. You’re all sweet and wonderful. Thank you for being in the living room together. It really does help.
Moth.~ you’re in my thoughts.
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Moth- I am so glad you posted. We are all there with you.
To Mel, KBL Candy and to all who are stuck in this rabbit hole, I know and understand the emotions you are feeling. With me it comes and goes. One day I'm up and ready to take on the world and the next day I want to scream and say ..... to everything.
We finally got our patio done but because of rain I won't be able to enjoy it for a couple of days.
On pocket duty for scans and appointments this week. Thinking of everyone!
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Thank you, everyone.
Tanya, I had a good cry on our Zoom. I missed you. Sorry you couldn’t connect. I feel better to get the tears out. I will be making an appointment with a neurosurgeon soon for my pain. My back is a mess, and my hips. Oyyy!! I will fight medication and surgery as long as I can.
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waving to Dutchchiris. Sending you a hug. love to all. It’s 1017 and I’m hungry. Odd. I would like a rice bowl. We have this place that has brown rice, tomatoes,cucumbers,sweet corn,avocado,shrimp,crab meat. In a huge bowl with sweet teriyaki (spelling) sauce. It’s heavenly. I’m addicted. I’d like some now lol of course they are closed Tuesdays,! I’ll have to wait. Hope everyone sleeps good! I’m going to try.
Also thinking of Runor. I was going to pm u but you deleted your post. Our girls are always doing something. Hope you’re ok
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I hate this new set up because the pages are so short and to try to go back to reread what someone posted and then move back to the open paragraph is simply the biggest pain in my arse🤬🤬. I can’t remember 💩 anymore. So to all of you that are struggling, I send 🤗 🤗🤗🤗 and more 🤗🤗🤗🤗. Be well my friends❤️❤️
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agree about the new set up. I feel I miss things
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Goldens you said exactly what I was feeling. I can't always keep up on this thread and it's frustrating to go back so many pages and try to remember all of it.
Hugs to all. Mel I think I can identify with a lot of what you are saying. I am still working but in a capacity that is half of what I was doing. At 44 I should be at the peak of my career and several of my colleagues have moved on and are where I wanted to go before I had to step back to deal with treatment. I don't really like to spend a lot of time thinking about the person I was. It's hard. I look and feel completely different and so in some ways I almost feel like I have split into two different people. Even emotionally, between cancer and the pandemic I find that I am more stoic and process thoughts inwardly instead of outwardly. I don't get upset at the small stuff any more. I mean, there are a thousand different little things that change. I do my best to embrace the changes but I have moments where all of it gets the best of me.
Moth - hugs to you. I have also been thinking about you a lot and praying for your strength.
Mara - Chocolate balls are not hard for me to contain myself with but cookies are a whole other game. I just can't leave them alone!
Candy - I admire all the research you do. I feel like that's one area I could be better at.
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emac - this bit about career is all very true and something I struggle with mightily. People have been telling me for the past three years to find a new job that would appreciate my skills, and i know I need to move on but between diagnosis and treatments and the pandemic, its been so much to mentally handle and I haven't shared with anyone. Now Im frustrated and bored so frequently that some days I cry at the whole mess - this job was a lateral I meant to get out of just as I was diagnosed. So angry at the cancer for holding me back, for seeing peers getting higher titles and doing cool things and I dont know what to do. Ive got some training over the next two months and I think a direction forming, but its like tempting fate, you know?
I was reading an article in the Financial Times today about BioNTech and the amazing position they are in due to the Covid Cash (as it was termed) they are sitting on from the vaccine, in order to develop and trial their actual areas of interest - cancer treatment and possible cure. The point was that they are not beholden to traditional pharma shareholder/IPO structures and requirements for (timely) return on investment on potential drugs because they have a mountain of cash they can use however suits to pursue their research and dont have to discard ideas that may work with a bit of tweaking. I remember thinking at the start of the pandemic that gee, this was shit but perhaps something good would come of it. Let's hope they can start to crack the code and open the door a bit faster and wider than this traditional pharma approach to date!
Going to be hot (almost 90) here next few days, so OH and I are going to cut out of work early on Thursday and go see Top Gun - not at the IMAX as they are only showing it at midnight now, but a fairly empty local chain. I may complain about my job but I can do it blind and one arm tied behind my back so hey, off we go to the movies for the air con!
Thinking of Moth - I check in on her Insta every other day or so and I hope that cisplatin can help turn things around.
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Mel - im making veggie sushi bowls for the next few days - just craving that rice and crunchy veg and a blip of spicy mayo all together. Totally hear you on that!
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Is anyone sick of cancer related "stuff"? I looked at my calendar this a.m. and saw June 15 Echocardiogram, June 19 bloodwork, June 20 tele-appointment with MO, June 21 Infusion, June 22 bone density scan. It would be soooo nice to see an entire week that doesn't have one medical thing in one of the squares. The only thing I can be grateful for is that none of them are long drives. Waaaaaaa.
Hopscotching all over the place to go back and see what I missed. I see comments with zero idea of where they come from in some cases.
Sondraf: I could not stay awake long enough to go to a late movie, even with the temptation of air conditioning. I am usually in my nighty around 9:00 lying on top of the bed watching telly. Around 10:00 I tuck myself in bed and it is lights out by 11:00. My DH is usually out for the count by 10:15/10:30. The night was just getting started at 9:00 all those years ago. Like going to see The Grateful Dead live. I saw their name mentioned on "Journey or Ordeal" thread. One of the best live bands -- ever!!!
mel: that rice bowl sounds so yummy. Our weather has been seesawing like crazy. Warm and pleasant and breezy, then cold enough we almost want to turn on the furnace, then it is sunny again followed by days of pouring rain. Junuary on the coast. Some days it is so chilly I want to make stews not lovely crisp, cool salads. .
Thinking of moth. And Shetland Pony. Have we lost another one of our beloved sisters?
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Beach Bar installed yesterday! Now on to electrical, insulation, walls and decorating. I hope to have it completed and serving drinks (to me, DH and friends) by July 1st.
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mae: what a wonderful She Shed. I'd want it to make my art in, go read in quiet but a bar sounds great too. Cocktail Hour!!!
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Wow Mae! I thought you were describing something much smaller. This is one BIG bar. Looks like the party is at your place!
I also love the color. My prediction is many hours of fun ahead!!!
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