My Husband, My Life, My Love, My Family, My Cancer
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Mel! Girl! Everyone was freaking out about you, turning over sofa cushions, checking behind the curtains. Thank god you are back in the land of the living but man, those shots! Some people don't bat and eye and others it's like they've been hit in the eye with a bat - knocked flat on their ass. Harsh! Hope you get better soon! We miss you when you aren't here.
Mae, there seems to be some mistake. I did not receive my invite to your crawfish feast. Send it again and we can re-schedule the feast. My times are fairly flexible....Hi to everyone else. In all the pockets that want ride alongs.
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Elderberry, I think with all the doses of the different drugs due to come in June, there may be less time between doses according to CBC reporting today. I hope so.
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Mel - what a stinkin’ b-day present. So sorry you were hit by the 2nd dose bus.
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Mel,
Thank you for checking back in. I was really worried you might be in the hospital, and it sounds like you almost were heading in that direction. Hope it makes you smile knowing how much we were all thinking of you. Rest, and I agree with the others. Reschedule the bday party!!!
Hugs from FL.
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mara: BC is accelerating the doses. My sister got her dose at the beginning of April and was supposed to get the second in July. She got notification to come in June 9. She fell into the 73 and older group but I am in the "clinically vulnerable" group so I anticipate getting a notification soon. Fingers crosses to have an easy time of it. I am hoping that since we all had longer than the recommended 21-28 days we might not have such a severe reaction to the second.
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Micmel, sorry about the crappiness of the 2nd shot.
Here’s my day.
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I want everything on that picnic table please? I’m starving after not eating for 4 days. I need lot of food. I’m starving
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indeed. Looks really yum
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Here's a poem I saw today on FB by Sharron Riessinger Blezard. I think it speaks well to living with MBC. Hope everyone has a good Sunday.
For Whom the Chemo Bell does not RingThere it is again—that bright ring of the chemo bell
accompanied by cheers and clapping and joy.
another chemo patient has finished the last infusion,
and so there is celebration and very real hope.
I am happy for them because I know what it feels like
to ring that bell and know that treatment is finished
and life can go on as before and all will be likely be well, yet
I do not live in that land of bright bells and second chances.
My dear METS sisters and I will not ring that bell
for treatment will accompany us all our days.
We are the ones who go from one treatment plan
to the next one, always seeking to stay one step ahead.
Our cancers are predictable yet also wildly personal.
We cling to names like Taxol, Abraxane, Gemzar, and
Trodelvy. We down oral meds like Ibrance and Temodar,
hormone disrupters, injections, and endocrine therapies.
We share the latest research reports and cling to shiny
bits of hope and possibility in clinical trials and FDA
approvals. We raise money for more research and
trade ideas, questions, fears, and prayers in online groups.
We place our lives in the hands of our oncologists and pray
their toolkits runneth over with options to keep us going,
with new approaches and ideas until there is a cure or
until we hear those magic words: NO EVIDENCE OF DISEASE.
We live with hair loss and neuropathy and itchy hands and
feet all in the quest for more good days of precious life and
time with those we love for birthdays, graduations, weddings,
anniversaries, vacations. We are brave and defiant most days.
We stare death in the face and say not today cancer, as we
defy the odds and suck the very marrow out of each day's
bones, even as our own bones hollow and weaken from
metastatic lesions and progression. No, we do not ring that bell.
But neither do we want your pity or awkward silences.
We crave your prayers and good intentions, your questions
and your dear companionship. We crave the daily goodness of
life, and we crave more life and hope and to realize our dreams.
So walk with my METS sisters and me; learn our foreign
language of cancer care and lifelong therapies. Trust our
strength and frailties, our anger and our peace, our hope
and our tears. Stand in solidarity with us every day.
For no, we do not ring that bright and hopeful bell, but we do
raise our fists in defiance of that which may likely be.
We will not give in as long as we draw breath; we will keep
going. We are strong. We are strong. We are here. We are.
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Hello all.
So pocket duty for this week, let me know if I missed anyone---
GoldensRbest- DH cardiac ablation Thursday.
Ok,, I thought there were more,, but that was all on my list.
Many to think about though-- Mel recovering, BevJen recovering, Booboo recovering. Read on another Thread that Bliss is in the hospital and not doing well at all. So many on here that are struggling. I read several Threads and seems so many are progressing, struggling with treatments, etc. Sometimes so heart wrenching to read on here, but yet I continue logging on.
Today I will do church thru online streaming again. I wish I could go back to services in-person. But I feel too unsafe. I know of some in my small church that still are not vaccinated, and with the online camera I can see them in the services--- they are not wearing their masks. I wish for a few Sundays that the unvaccinated had to stay at home and only the vaccinated could attend. Then I could feel more safe to attend. Tonight is gaming--- the other 3 people in our group are vaccinated, and I still wear my mask. They offered to wear their masks, but I said they didn't have to. Though if I asked them to they would.
Let me know of updates to the pocket duty list and I will edit the list.
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Chicagoan- I am crying. Wonderful poem. I am going to copy and post on my Facebook page. Thank you for finding that and sharing it with us.
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Chicagoan - That is the truth. Thank you for sharing.
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I definitely love that poem Chicagoan, thanks for sharing.
Well, this weekend has been a mixed bag, weather wise, my apartment was cold so I turned on a heater. Did nothing yesterday except fill out surveys, did pretty well, enough to pay for a small load of groceries which was nice. I have already walked 5000 steps this morning, need to go over to the grocery store for a couple of items as well. My freezer is packed full so I can't buy frozen, a couple of black beans and extra queso should do I think. Not sure if DB will be taking me shopping, we'll see.
Once thing I noticed is that the equate ibuprofen I used to get on Amazon seems to have been bought up. Saw it on ebay.ca for super high prices, seems like the price gougers are at it again. Until I get some from DB that he gets at Costco, I will just buy smaller packages and stay stocked up.
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Good morning all
Chicagoan thanks for sharing that poems. It definitely encompasses us all.
Candy thanks for sharing news from other threads. I didn’t know about Bliss. It sounds like your gaming group is a nice kind bunch. Soon maybe the church will offer a service for vaccinated only. Maybe an hour earlier than the rest of the congregation? Perhaps you could suggest it?
Grandkids are keeping me super busy. I’m happy to be able to give my daughter a break the pandemic has been a real challenge for them. Thank god for the pool TV and baking cooking’s- seems to keep them busy.
Waving hello to all
Tany
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Chicagoan,
Wow. That poem sums up exactly what I’ve been thinking about lately, but could not find an adequate way to express. After my last round of radiation, the techs took me to the bell. While they were getting the camera and I figured out what they were doing, I told them I was sorry, but I would not ring it. They looked at me strangely, but I still refused to ring it. I explained why (MBC) and they were still sour about my decision. I just can’t do it for them or anyone elsewhen I know clearly that I am never going to be cancer-free.
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Booboo that sucks. I look at the bell. I’ve seen others ring it and cheered for them. It hangs silent more often than not. Another symbol of MBC an unrung bell 🔔
Tany
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After radiation for painful sacrum and L2 mets, they wanted me to ring the bell. I declined. They gave me a cervical and a pin too. WTH?
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I’m one who actually rang the bell after 25 rads sessions post lumpectomy, with MBC. I looked at it as an end to a phase that hopefully had some benefit. I too will be in continuous treatment but felt a sense of accomplishment that I survived the breath holding gadget and very red and painful skin. Yet, I haven’t forgotten the day when I formally got the stage 4 diagnosis from my MO and walked out of the treatment room to hear someone down the hall ringing the bell after finishing their chemo. I get the feelings of non ringers, definitely
Hope everyone is hanging in there or better.
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Candy - DH cardiac ablation is Thursday. Thanks for remembering! So do you actually have a notepad that you jot down all these dates? I can’t remember 💩anymore. It has gotten really bad but yet there are some things in my brain that I can bring up right away. All I know is thank God for our phones so we can access the info we have forgotten.
My beloved brother passed away Tuesday. He was a few weeks shy of 81 and had cardiac problems and stage 4 prostate cancer. He had been hospitalized for 10 days earlier this month with sepsis. They finally determined it was from the leads to his pacemaker. But my brother was so stubborn. Still practicing law at his age (he shouldn’t have been - he had been pulling $ from retirement funds to run a practice that had no significant receivables), he was found dead at his office desk. Two daughters, living out west, arrived to help with things. My SIL has suffered from worsening dementia and fortunately has been placed into a local assisted living facility, until things get settled and she can be moved closer to one of her daughters. My oldest niece, also an attorney, went into the office and found all sorts of problems. The main one being my brother was practicing law without malpractice insurance! We are so pissed off. I used to think my brother was one of the smartest people I knew. Not any more. And it’s not like he was doing irrational things due to a stroke. He was fully cognizant of his actions. So our fear is that there are potential malpractice cases out there. A former secretary implied he had messed around with the trust account, which is a huge no-no. Just perusing the mail, my niece found two probate cases that had deadlines that were missed for providing certain financial info. I feel so sorry for her as she has to try to unravel the mess he left. The sad thing is that she had been trying to get him to retire for the past year and dispose of assets like a boat and condo to make things easier down the road. So now they are down the road and nothing has been done. All I can say is I don’t plan on doing that to our kids
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Goldens-My condolences on the loss of your brother. Sorry to hear about the mess-it's a good reminder for us all. I keep meaning to prepare a "Death Book" for my executor but haven't gotten around to it.
Booboo and Dutch-Early in my MBC treatment, when I finished spinal radiation, the tech took me over to ring the gong. I really didn't want to but was not as good as setting boundaries back then so I did but at least I refused to let her take my picture for their "Wall of Success."
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Goldens- I edited the date of your DH ablation on the pocket duty list. Yes, I keep a piece of paper next to my computer so I can keep track of pocket duty. But it is easy to miss some as I get to reading the posts and then forget to update my list, haha. My condolences on your brother's passing. Sorry to read that he left a mess, but I can understand that he did not want to give up his career, even with failing health. And your SIL's state of health, so much sadness around anymore.
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Goldens: my condolences as well on the loss of your brother. I am truly sorry that he left a potential minefield behind. A lesson for us all. I will undoubtedly leave some mess behind but it will be all my artsty/craftsy stuff and not law suits.
Chicagoan: I never did rads. I had never heard of "ringing the bell". Is this a normal practice at a lot of facilities? It just seems a little too "rah,rah, rah, sis boom bah" for me. My guess is there no "Wall of Failure" (in loving memory)
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Elderberry-Maybe it's a US thing but it is totally "rah-rah"-like we are supposed to be so happy treatment in "over." Ugh. My hospital has a gong-others have bells, etc. Wonder who thought it up? If I was completely done with cancer treatment, I wouldn't need a bell. I'd just be happy to walk out of there and never look back.
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No disrespect to bell ringers. I just understood it to be the end of cancer treatment not just a specific treatment. It just seemed somewhat expected. I will cheer and applaud everything I hear the bell. If you're happy, I'm happy for you. If you're celebrating, I'm celebrating with you.
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I am sorry for your loss goldens. It always seems like people have it together. I hope it's not tooo cumbersome for your sister to find out what she needs. Nothing is easy. Not even dying.
I'm sick of a lot of things lately, constant people's issues, I don't like this, I want that, why is it that the an issue can be looked upon by different sets of eyes, but some it would look different to them And they would have a different opinion, then to others, who would have a totally different view. ? Why are some people uptight and rude? Why are others sweet and kind? Why do some think they know everything and things are always there way or no way? Some days I wish I had enough income to just disappear, take those with me whom I'd want, and just go. Leave behind the constant turmoil and heavy life to live.
But I can't. I have doctors appointments and scans to attend. I can't do a damn thing. I can be alone. That I can do. Easily. Some days I wish I didn't care about people's feelings.0 -
Goldens, I’m sorry to hear about your brother, I know it must be hard and frustrating.
Not much happening here, I’ve got Herceptin tomorrow then hopefully some packing again.
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Dear Goldens,
Please accept my condolences on the loss of your dear brother. Gone from our sight, but never from our hearts. Hoping for peace as you remember him in the coming days.
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FYI: Zoom MBC MEET UP CANCELED Today due to US Holiday. See you next week!
Also, in trying to cancel the meeting for today, a mistake was made and it canceled the registration of some people. OUR sincerest apologies. Please re-register, and join us!
When: Mondays, 02:00 PM Eastern Time (US and Canada)
Register in advance for this meeting:
us02web.zoom.us/meeting/regist...
After registering, you will receive a confirmation email containing information about joining the meeting.
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sorry for your loss Goldens.
Maybe taking gk to aquarium
Have a good day all
Tany
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Goldens, I am also sorry on the loss of your brother.
Tanya have fun at the aquarium.
I have finally gotten over feeling sad when someone else finshes their treatment when I never got a break from it all. I used to feel bad but decided that being Stage IV and being stable from the neck down for 6 years and only having to deal with a met to the brain, I am pretty lucky that I am on something without terrible SE. I am physically strong when I mentally push myself to do it and life is going along fairly smoothly right now.
In short, if I have to be Stage IV, I do feel lucky to be where I am at when so many of us struggle with family issues, losses, SE and everything else. Let the people ring the bell and I hope for them they do not have to come back as stage IV.
I will say that I have used the radiation gong 3 separate times. Once for the breast wall rads, Once for whole brain radiation and once after my spot treatment in the brain. I hit it loudly too. Nobody sitting there will know I am Stage IV and may have to go back but it feels good.
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