My Husband, My Life, My Love, My Family, My Cancer
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I just need to get my thoughts down on paper (you know what I mean/computer, not paper haha).
I am reading this fictional book. One of the characters, not the main character or the main storyline, is dealing with breast cancer. They don't say what stage, but you can tell it is not Stage 4. She has had a mastectomy and going to have 5 treatments of chemo. But it describes how she is doing with the chemo. Tells about how her "body is on fire" and "every bone and muscle in her body was on fire", and how she is so weak and vomiting that her family is helping her sit up to drink and eat toast. "Through a cloud of pain and dizziness", it says. "Increased sensitivity to her skin", it says. Then it said the nurse told her the 3rd treatment would be when it hits so bad. That her family is providing her comfort and encouragement. And she voices she doesn't know if she can handle it.
Then I think, I don't want to go thru that. I don't know if I can go thru that. We know that with Stage 4 they do oral treatment until they HAVE to go to "chemo". And I know I have more oral options when I do have progression, before going to the "big guns". But after dealing with this for 8 years now, I don't know if I have the fight left in me to deal with the "big guns".
Of course, I don't know what I will do until that day comes, but I don't know how far I am willing to go in this fight. I don't know how much fight I have left in me. I don't know if I am willing to go thru all that, if how they described it is accurate.
Does that make me bad? Do any of you think about this?
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@candy-678 You are not bad. This is your life. I have similar thoughts. I am 9 1/2 years on oral treatments and am on my fifth oral med. I am about out of options. I have never been on IV chemo having been dxd stage IV de novo. I am 72 years old, on oxygen 24/7 and am tired. I have four beautiful grandchildren that I would love to see grow up, but I am tired of being sick and not being able to travel and enjoy them. If I could continue on my current treatment I would, but my tumor markers have started rising again. I have a scan next week. If the scans show progression I fear chemo is my only option. I don't want to spend my last year sicker than I am now just to buy a few months. I don't know whether I have the fight left in me either. My daughter asked "what would chemo buy you?" It is a good question and one I am wrestling with.
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Intolight- I am so sorry. I am only on treatment #2, so I am not where you are. I pray for your scans next week.
I had 2 doses of chemo at the beginning, when we thought it was Stage 2. That was 8 years ago. I am 8 years older and 8 years wiser, and 8 years more tired. Back then I was just diagnosed with breast cancer. I went thru the mastectomy and started chemo kind of in a state of shock- no cancer in our family until me. I remember feeling sick and dizzy- memory of bending down to put food in my cat's bowl and feeling wobbly.
But I don't know if I could do it now.
I have scans Nov 21st. Never know when the progression will come.
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Well, got micdonalds, had a free jr chicken so got those, fruitopia and fries, should be good.
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@candy-678 — I did the "big guns" eleven years ago when diagnosed with Stage III triple positive cancer. Four dense doses of Adriamycin + Cytoxin and twelve doses of Taxol + Herceptin + Perjeta. It wasn't a walk in the park, but I worked through it. Of course, I was 47 back then and everyone responds to chemo differently. My next-door neighbor barely made it through two doses of Enhertu before she threw in the towel. She ended up passing six months later.
You guys have been through so much treatment that I totally understand why you wouldn't opt for IV chemo. There's no shame in saying "enough is enough." It's good to know your limits, and I'm never surprised when some of the ladies here opt for hospice over further treatment. Some of the hospice ladies have lived much longer than they expected and I'm sure they felt better being off treatment than on. Just a thought from a lurker.
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@elainetherese Part of the problem with this decision is that there is no "end" date or a scheduled number of infusions. We would be on Chemo until the end or until we just can't handle it anymore anyways.
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@candy-678 You're not bad at all! You are in charge of your life and you will follow your heart when the time comes. I haven't thought that far ahead yet but have gone through the big guns in earlier stages. But as you said as each year goes by we all are a bit more worn down. We'll all be in your pocket for the 21st and whatever the future holds♥️
@tanya_djamila Beautiful pictures! Wonderful family memories for all.
@eleanora In your pocket for RO tomorrow🤞
@irishlove Glad your not freaking out and hope that these skull findings/met is not considered a progression. You go through so much daily it would be nice to catch a break on something. Hugs.'
@threetree Sorry you're not feeling great and have tingling down your legs, I hope you get some answers and start to feel better soon. Fingers crossed .
@mara51506 As always you're our energizer bunny that helps u all stay motivated for chores and cooking. I do hope you get out for your upcoming birthday that restaurant sounds enticing. Keep us posted, you deserve to celebrate you!
Hi to all here, hope we all sleep well tonight.💕
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I had the red devil , 6 of those and then after 9 Abraxane. It was terrible and I know I haven’t the strength to do it again. I’m on my first oral line it will be ten years in January I hope it lasts ten more years. I made the decision long ago never to go down that chemo lane again. No oral available, I will go off medications and see what kind of time I can still get. Its so difficult living life this way. Forever. Candy. I am right there with you . I understand completely what you are saying .
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@candy-678 No, of course you are not bad. It's a decision we'll all have to make. It would be nice to look into the crystal ball to see how many years - and what kind of years(!) - a treatment will give us to help us make our decision. We've seen some struggle with harder and harder treatments until the inevitable end. I know that's not what I want. I just hope I recognize when enough is enough before I get to that point.
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The not knowing what the next treatment will be like, what will the side effects be, will it even work, etc, is the fear I have each time I'm waiting for scan results.
I think chemo for early stage is more harsh, as the intent then is to cure. I went through it when we thought I was Stage 2 (turns out I was Stage 4 all along, they missed the growth in my spine) and it was very unpleasant. I know someone in my local MBC support group who's been on IV chemo for over a year, and they're still working (!) and have said it's manageable.
I don't know if I'd try it, though, honestly. When I had chemo, I'd had exactly zero treatments and my body was as strong as it was ever going to get.
Thinking of you all here, I've been tired lately but I read and think of you all every day.
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Good points, ladies.
Seeq- I agree to your statement "I just hope I recognize when enough is enough before I get to that point". And sf-cakes, when you said "when I had chemo, I'd had exactly zero treatments and my body was as strong as it was ever going to get". That was me. I was a newbee at cancer. I did have my mastectomy surgery just prior to starting chemo (the red devil), but otherwise I was healthy (or so I thought). I feel much less healthy now.
I guess I just have to wait until that point of decision, but I cannot see myself valiantly struggling thru harsh chemo again. I don't know if I have it in me anymore.
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@candy-678 - Candy, I would underscore what all the others have said. You are not bad, and I can totally understand your thoughts and can't say that those wouldn't/won't be mine too. I did the 4 dose dense red devils and the 12 Taxols, and one of the ways I got through it was knowing there was an end to the nasty stuff in sight. If I didn't know there'd ever be an end to a chemo treatment, I honestly don't know that I could or would want to do it. Sending a hug too.
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@candy-678 I agree with what others have said. We all have a very hard decision about treatment when there is no finish bell. Like @sf-cakes said. "The not knowing what the next treatment will be like, what will the side effects be, will it even work, etc, is the fear I have each time I'm waiting for scan results."
I'm on Enhertu but having slow progression. I just had a PET scan yesterday to verify that. I've already gone through most of the targeted therapy so I don't know what's next if treatment changes. I've never had the regular chemo so I'm having similar thoughts and not sure how much more treatment I can tolerate. I'm afraid of how things progress without treatment though so it's not a good feeling at all. This disease is terrible. I guess the question I have is at what point to transition to hospice. These things freak me out so about the only way to deal with it is stay focused on today, this week.
Update PET shows progression, increase on all liver lesions...
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I slept pretty well last night, just woke up. Got a few things I want to get done today, really need to pull burner out of stove and give a good thorough wipe down, take out inside of burner and soak in soapy burner. Too bad I cannot put the electric coil but obviously that cannot go. Been horribly stinky when I do use the burner so it needs a good go over to clear anything that may have gone through and on burner itself. It is a tough clean, got a wire brush going on the inside, soaking the container part and will be continuing to wipe the burner. If I do not get done on time, will microwave something or have a pizza with some of the chicken on top or chopped beans
Got laundry to catch up on, more recycling to organize and put in a container til garbage day Thursday night. Pull out what I need to. Might also use my smaller garbage container, load it up and roll down the stairs, little more efficient. I will see about that because I may convert the small garbage can into a cat litter holder and stick it by the litter box, not sure as of yet.
Tigger is no longer the treadmill master but the sucky lap cat which is nice, he has also taken to sitting atop the various containers sitting round the living room holding recycle and other stuff with them. This time he is on the recycling container. Have a ton of bags to recycle from Walmart but of course that is alright. My main store for delivery, remembering to use Paratransit when I go out.
No breakfast planned as of yet, may just be some mashed beans to go along with a meat pie. Will worry about frypan meals after I put together the stove again.
I hope everyone is having a good day and in pockets for all others. Only other thing occurring to me is to change filter on the wet dry vac, move out the litter box and everything else and give it a good powerful vacuum, I will see.
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I got 3 years out of Ibrance and then progression. I elected to do Doxil rather than Truqap because I’m traveling leaving tonight and diarrhea is the main side effect. I have had two treatments of Doxil and my only side effect has been slight transient nausea not worth medicating. My hair is supposed to fall out but it hasn’t yet. Doxil is related to the red devil but not the same. My advice is to not let the book scare you. Mot all IV chemo is horrible
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@mkestrel I am so sorry about your liver progression, in your pocket supporting as you move forward and find out next steps in order to deal with it. It is hard to do for sure, one day at a time as we all know. Give yourself a chance to enjoy something today. I came across an old post with all your beautiful flowers, are there any inside you can tend to?
I slept OK, had a lot of different dreams, none bad though. Supposed to be gloomy and cloudy, no snow til the weekend and then a fair bit. Temps during the day will still be above freezing. Since I am rarely out except for appointments, I will still get melter and put together my own wee shovel to keep outside clear for me. Locate cleats and use spikes on my cane. Overkill but I can do what I need to do. No more overthink though.
I am just having some penne pasta with chicken in it, going to dispose of the rotisserie chicken, I just have no desire to process it at all. Ground chicken or the chicken in my meat pies is sufficient for me.
Wound up having just a plain frozen penne alfredo, bit of chicken in that, added a bit of salt and sour cream and onion seasoning and put a squirt of galic mayo, not too much which was good.
I am disposing of the rotisserie chicken, bones and all. I started with a large trash bag, put an elastic on then folded the trash bag, two layers of protection, took 3 white bags with febreze in them, put the chicken and first bag there and finished with another black bag, put an elastic again and double layered it. I do not believe animals can get to it when put out since it has 7 layers of protection. I have to stick to the stuff I like. When I shop again, will get the 4 pck of lean ground chicken, 1lb each and just cook it up in the pan, can be seasoned to my taste. 10 bucks from Walmart for four pounds of meat.Sw
Now unless DB decides to take me out for supper on my birthday, I am definitely not counting on it, still planning to buy a chicken dinner from a restaurant called Swiss Chalet and see what I want to get then. Also cancelled unused streaming channels as well, I mostly watch youtube stuff, can get enough shows with a vpn and streaming.
I do hope all have a good day and in pockets for everyone.
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Had my post scans follow-up with MO today. Still stable although I have mild pneumonitis (symptom free except when I first wake up) and a small lesion in kidney. Since I only have one kidney, my internist has referred me to urology. MO wants to keep me on Ibrance and anastrozole and monitor. She did order an MRI of lower lumbar area since I have increased pain. She suspects nerve impingement since bone scan is stable. She hopes the MRI will help my pain management doc with treatment recommendations. I was kind of surprised that she didn’t have me hold my Ibrance for an additional week as my WBC was 2 and my ANC was .96. No wonder I’m pooped.
Here for pocket duty for all in need.
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Thanks for kind thoughts cookie and Mara. I don't have any flowers inside but I have pretty fall colors outside that I have been watching. The garden froze but I got a few Tabasco peppers and made some Tabasco sauce. This was my first experiment so that was cool. It is tasty.
Congrats on stable goldens, I hope your pneumonitis improves.
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@mara51506 Well if those animals get through 7 layers of wrap they deserve the chicken lol. I hope your sil is doing ok and you all can enjoy dinner at the Swiss Chalet. Either way I'm glad you have a plan to treat yourself to a nice dinner.
@goldensrbest Good news on stable! I hope the mild pneumonitis stays mild and you continue to be asymptomatic .
Was a beautiful day and I tried to spend most of the day outside before colder weather hits. Plenty to do with all the leaves falling now, everything look so golden. Sunday we have a tasting at the wedding venue so will be nice to sample everything. Busy days ahead with appointments and scans, I like to get it done before the holidays.Thinking of all here, continued prayers for strength and healing.
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Hi ladies….Cant sleep. Gabbie has chemo tomorrow and I’ve got to be ready to be at the hospital early with her. It still upsets me. I hate it. It makes me so mad. My fiancé drives up to her place to pick her up at 730 am and drives her there. Then I come to relieve him at nine and then when she’s done he drives her home again. He’s gone to every chemo. He’s amazing. I don’t know what we would do without this amazing soul we’ve been gifted. The best man I’ve ever known. I hope it goes quick and I can get some sleep. I think about you all. Mkestral love the pics. Make me smile. Tanya. Seriously??? Wonderful photos and I hope you had a blast. Be safe everyone! Much love!
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Last night I couldn’t fall asleep right away so at 1:21 AM ,I decided to read along here and see how everyone is doing….I had my treatment on Monday and lab work on my monthly visit to Onc, and am back on the Xgeva Injection. He also reassured me my MRI, that the lesion seen on my Posterior Vesatublum was not a new met. This was what has been causing the pain in my right hip groin and low back and causing me to limp and lack of my mobility. He has me being seen by his radiologist and oncological orthhopaedist for treating the pain. So I will be going to do rads for 2 weeks at JFK Hospital. They are optimistic I can get back to painless walking again. This has taken a huge concern off my shoulders being told that met is stable and no progression. Just posting this made me lose some anxiety, then I lost what I had typed, darn this website,🤬. so after I lost my post I closed my IPad , put it aside and turned over and fell asleep 😴. this morning I went to PT,came home and had some pea soup.
@threetree Hey there girl, I’m glad your concerns about Guilaine Barr are resolving.🩵
@candy-678 It’s probably a positive thing that reading the book inspired you to contemplate your feelings on future chemo treatment you may need and how you want to choose whether to continue or not. and you are definitely NOT BAD for having these feelings on how you will choose to face these things in your future with this bitch of a disease. You go girl👍
@mkestrel I’m thinking of you regarding the news on your PET scan. send in coming Breathe Prayers your way.🙏
@goldensrbest Damn that Pneumonitis ! I get that often and just finished another methlPrednisolone Pak. Healing thoughts to you🌷
@cookie54 Hey Jersey, thinking of you🥰
@mara51506 thoughts on you SIL and hoping you get to chat with her soon on how she is doing. I love watching some movies. I watched the Gladiator an old favorite.
Also saying hi to everyone else!♥️
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@shanagirl That's great news. Hope the radiation does the trick and you will be back to painless walking.
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@micmel Hopefully you can doze while Gabby has her appointment. My body does the same thing if I have an early appointment too. Good that you have help driving her to and from. Takes the load off.
@goldensrbest I am glad you are stable as well and hoping the pneumonitis stays asymptomatic as well.
@wren44 I am sorry to read about your progression as well, in pockets that whatever you take won't cause a lot of SE.
Had a decent sleep but still kind of tired. Spent yesterday talking myself out of an electric snow shovel, it is just november. Did pretty well as there is nothing on the way.
Nothing on the agenda today to do, doubtful DB will ask me to go anywhere. I am OK with that now, does not upset me. Only reason I want to see them is to find out what is ailing SIL but still respecting her boundaries.
I need to get together trash for sure, may use my own garbage can to hold some as I did not take it out last time and have a fair bit to go out. Just have to put a large label taped to the top. The folding up of garbage bag to make extra layers did work, my cats were not at all curious about any smell that could have happened. I triple bag everything else. Got a lot of walmart paper bags to recycle and quite a few cat litter plastic jugs as well.
Got two largest washers going at the same time, I love it, need a drain and then do vinegar and water mix 50/50 with a tiny bit of fabric softener that smells so good. Rest of leftover laundry to do is stored in Walmart bag, goal being to empty the bag by end of today and be clear of most of it. I've started putting dirty dishes in a bag as well and work on each section, makes it easier to follow where I am at. They are on the rinse cycle.
Having a few different thoughts for meal, Now that chia seeds have been found, will give some a soak for 20 to 30 mins in water first and then finish up the dishes. Once that is done, I think I want the chopped black beans and cheese and add some of the chia seeds, probably 1/2 tbsp since they do fill you up.
Going to soak seeds for 30 mins, then take black beans and shredded cheese, nice ground beef texture out of that. Heat up fry pan, spray with canola oil, add little bit of the plant butter and possible garlic spread on bottom, heat up, dump the beans and cheese. Add some cooked white rice as well, give quick stir and cover with lid. Will probably do a 1/4 beans and 1/4 cup rice as well. I do have a lot of ramen type noodles to break up and stick all in a container. Other than that, no obvious meal plans afoot except an egg sandwich later this afternoon on english muffin. I will see. I also found some tortillas that were misplaced, need to start storing groceries in dresser drawers or one of the large containers and keep it together. I do use an old paper shredder container to hold extra stuff I am using as well for more immediate meals.
The meal with rice, beans, shredded cheese and chia seeds were made in the same pot, no chopping in of the cheese, ate the beans. I first added taco seasoning to the rice as it boiled. I then added beans, soaked chia seeds and cheese to the same pot, turned heat up again, stirred the ingredients. Added queso, sour cream and the dry taco as well. It was very good, filling even though was only 1/3 cup rice and beans. I did add a miniscule portion of beef powder from the ramen noodles. Not sure about tonight as of yet. Might take a tortilla and add the peanut butter and honeynut cheerio mix, I will see.
I have a lot of paper bags to recycle as well as the tidy cat containers. That will all go out, even with all containers I have inside.
I hope everyone is having a good day and in pockets for all who need me.
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Addition to previous post. I found a ton of missing stuff food wise as I was unloading stuff, ran out of blue bags to use will need to put out as garbage bags this time, bought more blue bags which will arrive tomorrow. Also decided to get the clothes dryer that goes from the top down. I needed extra garbage and blue bags anyway so added to an easy to manage payment plan, everything comes tomorrow. I also have to say, easier to manage garbage WITHOUT my cane. Got 4 black bags of litter, garbage and the 7 layer chicken waste and one blue bag I had left.
I managed to get a fair bit of food and found some digestive enzymes and immodium from Amazon, they been sitting in there for quite a while but that was a bonus to find. I am also going to sort food and keep in the same area so it is not all over the place. When I make my Walmart order, will get another large box for stacking up stuff. Have so many reusable bags from the grocery store it is quite ridiculous
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Well, pretty grey and rainy this morning, no snow yet, that will be this weekend but I am sure it will melt as we will go above freezing, no worries here.
Organized some of my pantry items scattered about and put into a container, did not think and put them in two containers, when get home, take out all the food and separate the totes. No big deal.
Have a routine echo as well today at 1 pm, Paratransit coming at 1230. Taking an ondesetron or Zofran. 4 mg. Going back to those with scans that require contrast. Probably take about an hour before the ride is coming.
I am also wondering when this referral with my neurosurgeon is to take place, I have not received anything. I have another appointment with RO this month and I do not know who to call. Not feeling bad at this point anyway but knowing what is to go on would be better. Would also let me know if I need to request services with the social worker who calls next week.
I am surprised to have found letters that said I have to pay for ambulance ride that happened back in sept. Apparently they lapse after a year. I just have to send an email with a picture proving my disability, luckily I did not throw it out since it needs to be the statement including the day I rode in the ambulance. I will take care of that later.
Had a pitiful egg done in the minigriddle, I accidently sent half of it spilling out of the minigriddle so nice mess to clean but ate it anyway.
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Well, echo was fine, no contrast as a suitable vein not found but they did the echo saying it looked clear enough.
I did call SIL while waiting, wanted to check in on her, seeing how she is feeling. She is still not well, no idea yet as she won't talk about on phone. I told her was not trying to find out anything, just a wellness check, she is ill and her mom is ill, wished her the best and told her I was hoping she would feel better soon.S
Had a heck of a time getting my Amazon credt card to let me reset forgotten password but on the plus side, dude gave me a credit limit increase, I don't stop those because as long as I do not ask for it, no impact on credit score.
Starving so ordered two egg mcmuffins and a strawberry frutopia. Expensive for what it was but atm, I just want something good. After I am done eating will wash clothing and then try out the hanging dryer.
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Hi everyone. Hope it's a lovely, pain free evening for all. Sitting on my favorite chair listening to Linda Ronstadt. Another voice silenced too soon by Parkinsons. Sister got to see Dolly Parton recently, before she retires. She said Dolly is just as sweet as she seems and has the voice of an angel. DH and I saw Tom Jones in Vegas in 2005. He still had it!!! Sis and I both got to see Elvis at Spectrum Stadium in Philadelphia about 3 months before he passed. I thought he still had an incredible voice and show with back up singers. Sis didn't feel the same way. Regrets having not seen Neil Diamond and Frank Sinatra.
I'm retyping this as it disappeared into thin air. SO I'll cut it short. Florida Cancer Specialists pharmacy called me to say they have a grant for me. It will cover the Ibrance deductible and Xgeva deductible ($600). I only take the Xgeva once every 3 months due to the unaffordable deductible. The lord must have heard our prayers as the cancer has been progressing in the bones. I am so blessed.
Thinking of each and everyone of you and in your pocket. I don't know that I could do chemo again, either. I took Novantrone for MS back n 2002. It was rough and damaged the ejection rate of my heart, so I couldn't finish the course. So, no Candy, nothing wrong with making or contemplating future treatments.
Irishlove
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@irishlove So glad you got a grant to cover deductible! Every little bit helps and god knows how much money you have put out already.
@mara51506 Glad your Echo looked fine and I hope you get info soon on the next step. It always feels a bit better when there’s a plan in place. I’m sure your feeling concerned about Sil I guess all you can do right now is check in to let her know you care.
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@irishlove I am so glad you got a grant to cover meds deductable, that is great to hear.
@cookie54 Yes, glad I could call. She is tough but I want to give her support, even through verbal support. Not worried about finding out until I see her. Hopefully her Mom feels better soon as well.
Tried out my new wee dryer. It was cheap and I saved up for it, easy to use, just hang it up and plug it in, put a few clothes in and it blows the heat down. Just a fun wee purchase for light clothes drying and delicates as well. I have a drying rack that can be employed on the back of the bedroom door should I need it. I will see.
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