My Husband, My Life, My Love, My Family, My Cancer
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Thanks all for comments about Medicare. I'll try to survive another year to the dismay of all of the government and insurance companies and wish you all the same, with many up days.
It has stopped raining here. The garden calls…my husband and brother did the tilling so maybe I will get some plants.
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Seeq, I am also sorry for the loss of your brother, sending condolences to you, your family and his friends who loved him.
I am making a weirdish breakfast, 1\4 cup of quinoa and a handful of chia seeds, generous portion I think, put a bunch of sour cream seasoning in the pot to give a flavour and remembered to spray the pot. Healthy is good and might throw couple of buttered non on the side, I will have to see then take a drink of the chocolate milk. I need some of what milk gives, do not like it much but I like the calcium and vitamin D.
Edit, breakfast was wrong, next time cooking quinoa and chia seed separate. Came out with crispy chia seeds and slightly under done quinoa, it was still pretty good and just had to soak pot first and give a hearty scrub, did not taste the sourcream and onion flavour so will add later when seasoning and out of pot. I added a little ranch dressing and Big Mac sauce, bought some extra when ordered food. Overall, still a good nutritious meal. Unsure what rest of the day will bring food wise.
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The 2-year wait for Medicare for those of us under 65 is truly ridiculous. When considering my retirement, factoring in the cost of COBRA was a serious consideration that kept me working longer. I didn't know that my late DH's retirement plan would cover my health care, they actually reached out to me to discuss, and this was a major factor in my decision to retire at the ripe old age of 54 (lol).
The bill that would allow people with MBC to receive Medicare right away, at any age, continues to languish in congress. It's outrageous that something like our diagnosis, which has no political affiliation, isn't an immediate bipartisan slam-dunk to approve.
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Mkestrel - Your cartoon is funny and the very reason I don't even try to grow any plants. Brown thumb and too many bad past experiences. I really admire those of you who have luck with it all.
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Wow, I had no idea about the Medicare rule. It makes me even more grateful to be 65.
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I guess they just assume the younger crowd have access to insurance via a partner or something? We want to move back to the US badly but trying to figure out the insurance situation and Medicare is just I dont know. I dont have to worry about that here but at the same time the payouts I can get from social security vs the cost of living and keeping my private insurance (I prefer mine to what my husband has) if I can or can't work are a concern. Not to mention certain aspects of care are downright scary. Its a big decision to make and Im what, 47 this year. Meanwhile my parents/aunt and uncle sail along with their excellent insurance (dad's I think comes partly from state-based insurance) and Medicare.
As for dealing with the mental side of MBC - yeah, Ive really been struggling with that. All these fancy drugs all so you can go spend your days at the hospital to get treatment so you can keep taking the fancy drugs, or stuck at home too tired/in pain or whatever from the fancy drugs. I had a good first few years but thanks Covid for limiting how I could have actually spent them. This is my fifth year, its been a hard hard year and there is no way to get out of this crazy world. Except one way, and Im not ready to go through that door just yet.
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Sondra, I relate to the mental part of dealing with MBC more than the physical to be honest. I do have to tell myself not to wish for the stuff I was able to do since that just makes more depression for me and that I am lucky to not have a lot of pain or major SE from drugs.
SIL was a whirling dervish in cleaning and organizing, I knew better than to get in her way, she did not want help, treadmill is gone, not regretting it either, planning 10 min walks around the block to get steps. I told her I was going to send money for all the help, she said no but I already sent the money already. We will take this week off of walking and shopping as they both put in a lot of work, she is very quick, putting up new curtains in the kitchen and put away a lot of stuff for me, mopped floor and cleaned sink. Really kind of her to do. Need to learn to clean as fast and furious as her. Should not need to dispose of much more, I have way more floor space as well, need to get used to where stuff is now. That should not be a problem though.
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@candy-678 The “clown issue” Mel spoke about is really just so true for me, but because I feel so lousy all the time and Isolate at home…I can’t go out without makeup. 💄. Always been that way. A little lipstick eye shadow and blush and I feel like I don’t look like I’m Stag IV “cancer girl.” 🙄
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@mara51506, do you feel like your medical team brought up sufficient ways for you to get support re: the mental aspects of dealing with the MBC diagnosis out of curiosity?
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Yes I do feel that my medical team brought up sufficient coping mechanisms to deal with disease, I did have a social worker initially but once I settled in to dealing with disease and such, I mostly did it myself. After year 2 post brain met dx and treatment, I am dealing with it in a practical, stubborn way. Now other than the appointments, I mostly don't give much thought to my cancer other than the loss of working but I am a believer in not looking back but forward. Deal with what is in front, not what was lost, that is too depressing. I know what I would want should progression and my family is more helpful than I could ask for, they and this site provide much of my support. I have dealt with this 9 years, been lucky in treatments, stability and no mets below the chin so really don't have much to complain about.
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Well, my apartment is organized and pretty clean, going to maintain it that way everyday, think that will make life easier, purchased a couple of the pet blankets put on top of storage ottoman and another over a bigger storage bin, SIL singlehandedly organized kitchen to be much more functional and that was appreciated for sure. It is garbage day, going to dump litter and won't have to much to dispose of since brother took stuff away. I did get rid of the treadmill, really was not using if I am honest and it just took up space. Only area for me to organize are closets etc. Using my small garbage can to hold food as I am just putting out bags now.
Did a large Walmart delivery since am not shopping this week, no beans but lots of popcorn, meat pies, cat litter and cat food. Was planning for cat litter on Amazon but too pricey, wanted the lighter and it was less expensive.
Going to have some fish and crispy lentils, (just microwaved to make them crispy, use mayo and salt and that is about it. Not sure about the rest of the day and what it may hold, hoping weather stays nice, now that there is no treadmill, I think 10 min walks around the block even in summer should help keep the heat at bay and prevent heat stroke while providing steps, still want to beat or meet older DB 21000 step at some point but in several small sessions per day be it marching inside or small walks outside.
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Mara~ you always have a good outlook. It’s refreshing! My good friend is facing progression and her cancer changed from er to triple negative. The only treatment available for her is heavy chemo. Nothing orally anymore. It’s knocking her down like I’ve never seen and I’m scared she’s not going to be able to take much more. I know within myself I wouldn’t be able to keep that up. I’m worried sick. And wish I could help . I need to be positive for her. I’ll take some strides from you. Thank you. Glad you’re happy with your apartment rearrangement or new less cluttered for your safety. Have a good walk today!
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do all of you ladies have power of attorneys completed?? DNR’s? I do, but have been asked that several times this past month. I was just wondering if you ladies get asked this question and if you have yours done?
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I have power of attorney done. I'm not ready to do a DNR. DD knows what I want if something catastrophic happens.
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Good midnight all. Watching weather and it's just crazy the number of tornado warnings, and confirmed tornadoes. All week long this has been going on, so please be weather aware.
Oh it sounds great to be so arranged in one's home, Mara. It makes one feel lighter. I did a mass sweep of two closets yesterday and today. Bagged up clothes and linens, shoes and men's items, too. Wonderful to feel satisfaction. Pain management has allowed me to do more.
Mel, yeah not fond of clowns and putting on a good face. I am so sorry your sweet friend now has to deal with chemo. I think if you took a survey a number of posters here would say no thanks. You really do have to measure the quality of life and one's own threshold of endurance.
We both have DNR and power of attorney. One of the forms requires a yellow form to be official. Can't recall which one but I think DNR makes sense. We gave copies to the hospital and doctors offices. I don't want my children to have to be overwhelmed when my times comes. According to MS sites I'm close to end stage MS. So throw in MBC, hmmm, which one will be listed on my death certificate, I don't know. I've believe I've passed the threshold of constant fear. My job is to take care of my health, so I've really started organizing, pill bottles, advocating for services and learning what is and isn't so important. In your pocket for all your needs. Laurel
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@micmel, I completed mine last week - It gave me great peace of mind. My sister has the power to make any necessary decisions with regard to my health if I am unable to do so. Although I will admit it can be a confronting thing to do.
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Micmel I have DNR will and poa. Last week at Dr appt they asked me again, previously I gave a copy to 2 hospitals that are nearby. My dear friend had all of her paperwork done but they still revived her bc no one was there and an ambulance was called. I raced to her house and caught the ambulance before they pulled off and the emt said unless I had the DNR in my hand he had to do his job. She had glio blastoma grade 4 and her last mri showed it spread. That snafu left her on life support for 3 days and then hospice for 9. She was kept sedated but I know she didn’t plan for that.
as much as we plan we lose our control at that time so…Tanya
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Mel- I do not have a DNR or POA done yet. But I want to be a Full Code for now. My cancer is stable- Thank God- and I am doing pretty well still (except for the arthritis), so if I get in a car accident or have a heart attack I want to be resuscitated for now. I will fill out the DNR papers when the cancer gets out of control. I have tried to talk to my only sister about the POA papers, but she does not want to talk about it. Funny, not really funny, she would end up being the one that the healthcare professionals go to anyway - - - I don't have a spouse, or children, or living parents so she is the next in line legally for "next of kin".
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I don’t have either done but my hospital does ask about Advanced Directives on occasion. They’ve offered the paperwork a few times my I lost tract of it during our move to the mountain. DH knows what I want and is capable of making medical decisions. I figure everything else can wait.
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Mel I have been asked that on occasion also. I do have an Advanced Directive . I don't have a POA at this point DH knows my wishes.
mkestrel I love that cartoon lol, fingers crossed bought some beautiful hanging petunia baskets yesterday. Hope I can keep them alive for a couple months.
mara Admire your organization skills, I love that feeling when all seems in place.
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Hi Mel - I do not have a POLST form (lime green, to post on the fridge, and you can decide to be DNR or not) or a will, or a POA. I have lots of family drama and cannot decide just who and how I want to do all of this. Some of it too, is just the old, "I just don't want to/can't go there" sometimes. It feels like giving up in a certain way to me, even though I know that none of us are invincible. I spoke with a social worker one time at my medical facility just to see what it was like, and all she did was harp on how I should complete an Advanced Directive. That wasn't why I initially decided to talk to her, and she was someone I didn't even know or have a relationship with, plus it was her last day there (a good thing in my book), and I just plain didn't like her. I kept thinking she wanted me to do that, just to make it easy for the hospital because I'm stage 4, nothing about what I was needing to deal with, and I had so much else going on and on my mind, and she just didn't "hear me". I've declined to speak to their newer social worker because of my terrible experience with the other one. She was just a broken record over completing an Advanced Directive.
I fill out a lot of POLSTs for incapacitated people in my job and my issue with them is that you can say DNR, limited interventions, full code, etc. depending on the current situation, the person's wishes, etc., but when the crisis actually occurs and the POLST is supposed to determine treatment, so much could have changed about that person's situation and oftentimes what was decided isn't appropriate and/or necessary. Sometimes they have to be changed "on the spot" at the time of crisis/the event, and that can be an issue, so I can't quite decide what I want. What really matters is what's actually needed/wanted at the time of the critical event that triggers using the POLST.
I cannot decide who to have as a POA, will executor, etc. either because of my messed up family situation, and I don't want to have to pay a "professional POA", etc. I don't have that much! I have a very good friend who is the most honest and trustworthy person I've ever known, and I had always thought she could be the person, and she has always been willing, but now she has her own health problems and is also managing her parents' estate and that of another friend of hers who died a couple of years ago. (Many have thought of her as the person to have as your executor.) Unfortunately, due to her health issues, she is taking care of things (honestly and discreetly as would be expected of her) very, very slowly and people are having to constantly ask her just when she thinks she might get this that or the other thing done. Both of these estates she's managing are dragging out way beyond what they should, because she's I think, just fatigued and distracted a lot. Lots of medication and side effects. She's a couple of years younger than me (I'm 71 and she's 69 now I think), and I've come to the conclusion that you need someone in the next generation down to manage these things. Very often the person you pick when you are younger, becomes infirm themselves by the time you need the assistance. You see it with the husband and wife situations to, where they each choose each other, but when the time comes that one of them dies, the other one is often also quite infirm and can't actually do the job. I don't know anybody in that younger generation that I could turn to for these things. I was thinking of talking to a lawyer to see what they might advise in these kinds of situations. I'm just in a very stalled place about it all. Don't even know what I'd put in a will, due to my family drama.
You really got me thinking Mel, about things I don't want to think about, but should/have to.
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I just dont want my kids to have to make any heart wrenching decisions. I just got it done and I feel better that everyone knows my wishes. I’m worried about emergencies and whoever is treating me , may not realize it even look that I have a dnr in place. Then they would intervene and I could end up on life support. Which I don’t want at all. It’s really something to think about
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Last year after I was diagnosed with the lymphangitic spread to my lungs I started getting things in order. I have a will and made my house a TODD (transfer of deed upon death) to avoid probate. When I was in the hospital this month I changed to a DNR. I had a recent discussion with my PCP and she said what is important to consider is your ability to recover from a "code" situation. I don't see myself now recovering from broken ribs or an extended time on a ventilator and having any quality of life. I also don't want to die in the hospital. I'd rather be at home with family. I still need to set up a POA and medical POA.
illimae gave me the idea to get a folder together with all the things my family might need so I have bills with account numbers, a list of passwords and I add things as they come up. I also recently went to the bank and put my brother on my account so he has full access to close it or withdraw from it and pay bills should I be in the hospital or something like that.
The only caveat is that my dad is listed in my will as the primary beneficiary and since then his cognitive status has declined so I may need to change some things in my will if his condition or my mom's deteriorates before mine does. It's so hard to project how the future will play itself out.
PS: speaking of illimae I have been thinking about you with all the floods and tornadoes in Texas. I am glad you are on the mountain and in high elevation. Also to the rest of you in the tornado sections getting the rains I pray you stay safe. We are possibly going to hit 90 degrees this week which is unusual for southern Oregon this early in the year but I am soaking it up!
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My DB is my POA but we need to finalize that, SIL runs the medical part, again needs to be finalized. They both know about the DNR I have, if I die, don't bring me back, if I have progression, no further treatment. They respect my wishes and understand them. I do recognize the need to make sure everytihing is official though.
I did get a big Walmart grocery delivery, cat food and litter which ate up a good chunk of the bill, some popcorn, white and sour cream and onion, meat pies as well, no beans or canned meats, still have a lot to finish.
I am still finding my way around how SIL arranged things which looks much better to me, aiming to keep mopping and dusting, not necessarily every day but every couple, dumping litter once a week with two cats and running a vacuum every once in a while, losing my stupid idea of buying an eye vac, basically vacuums up the stuff you sweep toward it, a dustpan taped to the floor and then vacuumed with hand vac is about the same.
Ordered breakfast, bad habit but enjoyable, hopefully they do the order right this time. Eating lentils and chia type side dishes with eggs or fish. I was not in the mood to cook last night so make up a chia seed meal with sour cream and salt, boiled the chia seeds, if I was not accustomed to fibre, that could have been bad. It was not bad but should have accompanied another meal. I consider that a fail from yesterday.
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Shana ~ if you should have progression. They test the progression by biopsy. Then the doctor will know if any changes have taken place. She went from er + to triple negative. Not alot of treatments in place for that type , that I am aware of. We are worried that she won’t be able to handle anymore, and there won’t be any other treatments.
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@micmel Yes they did the Liquid Biopsy the month they did all the scans. The documents didn’t mention my original Pathology of ER+ 99% & PR+99%, I’ve just assumed I’m being treat more aggressively with Verzenio chemo., Fasoldex hormone inhibitoran the targeted monoclonal antibodies XGEVA injections once a month. Im confused about the medical findings in my liquid Biopsy . If anyone knows what
Key Genomics, 92 Second Street, Hackensack, NJ 07601 Tel: 551-996-5806CAP #: 6949001 CLIA#:31D0707384
Liquid Biopsy Solid Tumor
MRN: Collected Date: Received Date: Reported Date:Detected Genomic Alterations
02/20/2023Time: Time: Time:12:00 AM 02/22/2023
01:23 PM Detected Genomic Alterations PIK3CA
No detectable chromosomal structural gain or loss ▪ -Low level mutation in PIK3CA gene
-No detectable chromosomal structural gain or loss
-These findings suggest circulating solid tumor DNA-PIK3CA mutation suggests response to PI3K/mTOR inhibitors.
HeterogeneityThere is an abnormal low-level clone with PIK3CA mutation.
Diagnostic Implications
Diagnostic ImplicationsPIK3CA These findings suggest circulating solid tumor DNA
Therapeutic ImplicationsPIK3CA PI3K, AKT, MTOR inhibitors
Prognostic ImplicationsPIK3CA Poor0 -
Shanagirl- I may be wrong, so someone else jump in too. I was thinking that a liquid biopsy cannot see the hormone receptor/HER2 status. That you have to have a tissue biopsy to check those. When I had liver progression back in 2021, we did another tissue liver biopsy and found my ER went from positive initially to negative at that time. And my PR stayed positive. But with bone-only mets, I don't know if you have had a tissue biopsy of the bone. So, I don't know how they check if ER/PR/HER2 changes in bone only ladies. Hum…. That is something to ask your MO.
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Emac, all good here, too far south for tornadoes and too high up for flooding, fire is the big concern here but everyone is very careful and mindful of the burn bans.
Not much going on here but I do have a music festival in California next month and got upgraded to guest/VIP passes (I played the cancer card, lol), super excited for that.
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Today looking like 10000 steps in 5 or minute marching or walking in apartment. Lots of housework, maybe one room at a time. Food is lentils, rice or pasta, naan if not gone off. Need to finish up eggs and choc milk that is about it for me.
Hoping everyone has a good day, in pockets for all who need it as well sending love and warm thoughts.
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