From Alvadeer Update: another spot of bother!
They closed the original thread, so AC must have thought this was all over.Ha ha, so did I! But no. Updating (unfortunately) with "It's baaacccckkkk" and the appropriate scream. The Alien has left seedpods and they are marched all along the bottom of my breast in a perfect circle of pearls. The worst KIND of pearls. Picture me dressed as Ripley to fight back.
So, it is back through it now with Ma Kaiser on the phone as though she's my daughter. This nurse and that nurse and the other.SO far the plan is (and it could change dependent on tomorrow's PET SCAN:1. PET Scan tomorrow 1 p.m. 2. Meeting with the whole tumor board, surgery and oncology team on next Tuesday. 3. Surgery on the 21st for mastectomy.
The PET, if it lights up like a Christmas tree (one without presents), may change plans; not sure. And closure may be a problem for this with questionable skin involvement; I could luck out with a surgeon (I love mine) and a plastic surgeon both toiling over this old rag of a body.
It's a day at a time. Y'all were so very kind in the past, but there's no need to love bomb me. Just give me a thought. And know that I will be DEAD FOR 6 MONTHS before I stop writing on AC. You were afraid of that, weren't you?
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You have also given me some very insightful advice as I dealt with Alzheimers and passing of my sister and now, unfortunately, about to start another chapter of same with DH. I know how to read test results but asked for face-to-face session with doctor to present them. DH needs to hear directly.
But, what I really wanted to say, my point of this post is, my biggest thank you is for sharing this part of your life with us now, sharing your procedures, your steps, and your wishes. I am honored to be apart of this journey with you. This is an educational experience, that I really didn't want , but much needed education for all of us. You are not alone! 🙏🥰💓
Yes, Shirley Dot, definitely hanging on while QOL is good! Never fear.
Thanks for your note...........If this is metastatic as well as invasive in the breast, I would do MAiD asap when OUL went south or for any movement toward brain. But asap means 6 month prognosis. So I would await that if I felt safe to. There is otherwise the other methods FEN and others can help with. I feel remarkably good for all that is apparently cooking up in there. I will know where I stand more with the Medical/surgical/pathology/oncology meet on Tuesday. I will update here, as they will discuss the PET scan done yesterday. I will hope to be able to "manage" things well; but life is, as we know, full of monkey wrenches to throw into the works.
I won't be fighting this out with anything such as node testing, chemo, radiation, etc. I am ready to go. I would do that when circumstances seemed right to ME for right reasons, and given I could get my MAiD or do other methods.
All at Kaiser have known my wishes many years. Wishes are known. As I laugh, my polst is so old it's dusty from hanging inside the cabinet door, hee hee.
I fought cancer nearly forty years ago and that battle gave me 38 years of very happy life. I feel VERY lucky indeed. I made happy use of that four decades, and I have no taste at all for old age. As an old retired RN I know what it brings, and it's NOTHING good. My grandchildren are grown and approaching their thirties. None have GREAT grandchildren on the way and I am not all that into babies anyway (sorry). I am good with passing the torch.
Will keep everyone updated. A mastectomy is tentatively on the chart for April 21. But we will see what Tuesday's meetup with N. and me has to say. I will update.
@Sunnygirl, my sense of humor has always been dry and ironic in nature. I am afraid it has been little appreciated, hee hee. I have never meant it to be anti-life or anit-humanity, but it has often come over as such. But I mean life! It is all so BIZARRE! What in the world is one to say? So I am glad you are happy with it!! It's an acquired taste that many never choose to acquire.
May The Lord give you strength, peace and complete healing.
Had the PET SCAN today. Other than my own anxiety (ALWAYS knee-jerk off the charts ugly), creaky bones and muscles, and hard table, there were no problems with getting that. Easy peasy.
I have been warned by ONE WHO KNOWS that Ma Kaiser can have a nasty way of sending results out to you without a doctor to lovingly explain that you haven't long for this world, and so not to open results on tests until ready to look. As N. and I meet with "the whole team" on Tuesday it is one we will wait until Monday to open if we have a choice. I do not myself like the look, feel, or rapidity of this spawn of the Alien; I knew last year with the mother tumor, as soon as I felt her. I don't like the kids any better. In fact I like them a whole lot LESS. We know already they are invasive cancer, and we know they are rapid spreading. Just don't know if they have got off home base of the breast. The PET scan may help to determine that.
Meanwhile on we go and I so appreciate your loving support.
To the regulars here, two people here have my beloved's phone contact. I won't, like Need, be gone without a word. I wouldn't want anyone wondering "What happened to that old bat Olga? Was THAT her name? Iva? Now what WAS her name!?"
I think there must be prayers out there for the atheist? Because at one point, given the nerve and neck radiculopathy I have, the hands clasped back in back of the neck and raised overhead was so painful while on that rather hard slab, that my arm began to twitch and nerves to zing. I thought "I am not certain how much longer I can last." Then I said to myself "Their Lord hung on the CROSS from NAILS, but YOU think you can't keep your hands over your head another minute? Are you KIDDING me". And I "hung in" there. Hee hee, y'all will make a "Christian" of me, yet?
bombing 😉
You said "They closed the original thread, so AC must have thought this was all over." Praying this will be a "short" thread for you due to the tests bringing pleasant surprises for the doctors and you.
Have you considered a site like https://www.caringbridge.org/ where you don't have to be concerned about threads being cut short. You can have it public and share the link here and we all can follow you or private so only those you choose to invite can follow your story.
I have used it for about 15 years for my husband whenever he is going through setbacks and/or when we have something positive to share. It allows me to say it once and not have to keep repeating the details to everyone. It is also nice to have a "diary" of our events in one place that I can review from time to time. It has been a year or two since the last time I made an entry but I know it will be still there for new entries anytime we desire to share something with our friends and family. During major events, I have often made entries every hour!
When he had Deep Brain Stimulation Surgery (DBS) for his Parkinsons, friends were logging in all day to check my latest entry and sending comforting words of encouragement. It felt like they were simply popping in with a hug and saying hi but not intruding! You can designate someone to make the entries for you when you don't feel up to logging in yourself.
We are all behind you with virtual hugs, prayers, positive thoughts and good wishes.
Wishing you peaceful anxiety free moments during this well planned journey of yours. For some reading material while in those dreaded waiting rooms you may wish to read "Death with Interruptions" by Jose Saramago. Death is a woman and she is quite a character!
Also "If Cats Disappeared from the World" where death appears dressed in Hawaiian shirts.
Seeing as you appreciate the female lead like Ripley and the alien and are a self proclaimed death junkie! 💕💕💕
I'm so very sorry. But you are strong and resilient, and I'm counting on you. I know for sure that you'll do your very best to overcome this new difficulty, just as you have before. Sending love and hugs, and please visit us often to update. You are cherished. xxxooo
I won't be doing any big cancer journey at 83. My journey now if more looking ahead to MAiD. Had my first mastectomy in '87. Had some GREAT years cancer free since then, until it caught the second breast a year ago.
I wanted to go directly to FLAT, but it was suggested, age and all, we did lumpectomy with wide margins. I have declined node testing, radiation, treatment (with this a triple negative, it's unlikely that would have done a thing but relieved me of what little hair I have left).
All at Kaiser here are a marvelous team. They fully understand my wishes and did since last year's lumpectomy. Those were/are:
1. If it spreads into the breast, go with full mastectomy (that's now scheduled for April 1st tentatively dependent the PET doesn't show it "everywhere".)
2. If spread then we will allow it to do it's worst, monitoring it for symptoms and with the palliative care team. Go for the good drugs while I am comfortable "enough".
3. If I get the magical "6 months" prognosis at any point I can go for the MAiD laws I worked so hard to promote. You may know the process. You speak with psychologist; your team says these have been your wishes always, etc. etc. I will be assisted with that in the Kaiser system.
My goal is to contain. If no containment then take my final exit as quickly, painlessly, and with as little muss and fuss as can be achieved. My family all aware and supportive. And strong.
It has always has been my wish to pre-deceed my guy. It would be awful dealing with end of life without him; I am well ready"to go" if going I am. I have always been, as an old RN, a bit of a death junkie. Not afraid of death, only of mess and only of pain and only of torment for family. I am hale, hearty, walk, garden, do a ton of stuff. That's the quality of life I want. When I can't have it I am ready to relieve the taxpayer of paying out SS to someone past her sell-by-date.
I am good. Let's say I am as good as I can be given my normal anxiety. I hate tests. I hate the whole routines. I hate being in scanners. I hate being inundated with calls. I get claustrophobic. I hate "waiting rooms" where you sit until you get the facts. I fear the unknown. All that stuff. And I am in for a full month of that. Coward that I am I shall simply have to MAN UP . as Geo. Bush said.
Thank you for your offer of help; it is incredibly kind, but until you take your Death Doula training, I can decline. (God I would have been GREAT at that).
Positive vibes to you!
We are with you.
Which Kaiser for surgery?
I'm in the East Bay in Dublin if you need an Atheist bi***h handy. Will you come to the new Kaiser Hospital Cancer Center in Dublin? I'm 5 minutes away.
Defcon 5, one day at a time. Sending strength across the Bay right now.