I just wanted you to know that your tender messages have lifted my heart! I never anticipated such an outpouring of love from people across the world. To realize that numerous lives have been touched by my work brings me inexpressible joy. Thank you so very much for taking the time to reach out, as each and every note is dearly treasured!
My days, which are thankfully pain-free, are spent with my husband Steve and garrulous parrot Pumpkin. Just a year ago, I was a full-time caretaker for Steve when his condition deteriorated from a neurodegenerative disease. As the result of research and finding a neurosurgeon willing to go above and beyond, Steve’s situation has improved to the point where he is now helping to take care of me. Steve, Pumpkin and I spend our days watching comedies, cuddling and chatting (Pumpkin has asked me to marry him but I’ve responded that he wouldn’t want to become a widower!)
This sweet and precious time with my small family is incomparable.
Hospice has been wonderful, and their compassionate attention reassures me that Steve's and my needs will continue to be expertly and caringly accommodated.
Your beautiful notes are re-read daily, and every word is cherished!
With love and appreciation,
Anne
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Bestbird
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I am so glad the Guide has been helpful, and apologize for being unable to keep it updated after Jan. 4, 2023. For example, the oral SERD Elacestrant has since been approved for a subgroup of patients, and it is not in my book. Nonetheless, I hope most of the Guide will be useful!
you stop worrying about things like that Anne. We still have such a great bible that hopefully will need to have to change a lot if the research gets better!
But for now, what you have done is more than enough, and you need to save that energy for you and yours. What’s wrong with Pumpkin becoming a widow? I bet the ceremony memory would outlast anything else.
I have been looking out for you , hoping that I hear from you , it gives me so much joy to know that you are pain free and content with your husband Steve and pumpkin the parrot, I haven’t been on this site for very long , but I was so overwhelmed by your support and especially your book , you are so respected and loved by so many people , sending lots of love and hugs 🤗
thank you for saying perfectly what so many of us feel! So happy to get news of our friend Anne/ Bestbird… and now we know thst pumpkin is the reason for your Nick name! Thank you!
This is Natalie - I'm from San Francisco and am about to move back to Geneva, Switzerland where we lived from 2010-2013 and spent some of the best years of our lives so far (and where our son was born :-)).
Your book and thoughts here on this forum have been incredibly helpful for me personally and you are such a positive and knowledgeable influence in the MBC community.
I am so glad that you have this time with your family and that the hospice team is taking excellent care of you.
You are in my thoughts and thank you for everything.
Dear Anne, thank you for taking the time to give us an update. I have been thinking about you and wondering how you were doing. I'm so glad that you are pain free and that your husband, Pumpkin and hospice are keeping your days filled with love and great care. Sending you hugs and prayers.
Much love and prayers to you and family! NOW we know who BESTBIRD is Long may you run and may you find your time on this earth gracefully extended beyond your dreams! <3 So happy to hear your hubby is better and able to help! God bless you and heal us all in Jesus name, amen! <3 PS I have a friend on facebook with a parrot and she recently met the love of her life and the parrot loves him too! they take the parrot everywhere, boating, etc. you name it! I will try and get a picture for you of them in the boat!
Here's my sweet friends' pic! <3 I'm sure they won't mind sharing their joy!
this forum is wonderful and I don’t know what I would of done if I hadn’t found it. I wish you the best and enjoy the time the best you can . Every precious day is a gift from God. 🙏✝️
Thank you for sharing yourself and your thoughts, and strong peace driven courage. You are someone I look up to. You are in my prayers and thoughts. Enjoy every minute you have, as every minute, every moment is precious.
You will be long remembered on this board with love and thanks for your many contributions. Enjoy your time with Steve and Pumpkin. Blessings to you and Steve and prayers for you. Hannah
I wish we could update the guide with new developments, like the oral SERD for ESR1. Maybe we could do a sort of addendum, a little update site?
Bestbird (the person, not the parrot), I think we, or many of us, wonder what it will be like when we decide to stop treatment, when there are no good options. It is so good to hear that, at least for you, it is not painful and is sweet. (Amazed, too, that a surgery improved Steve's condition. One of my most beloved friends has a neuro-degenerative disease and there seem to be no treatments. She started getting infusions which seem to help, but not to reverse her impairments.)
My friend's 22 year old daughter developed one a couple of years ago too. It's been heartbreaking seeing her try to live her young life. She has suffered terribly and her legs have very little strength in them now. It's hard to witness
brings a smile to the heart to read "A Sweet and Precious Time." may you be happy.
in life and transition, you and your work are of benefit for others.
you will be acknowledged in (the) daily thought: “May all beings everywhere plagued with sufferings of body and mind quickly be freed from their illnesses. May those frightened cease to be afraid, and may those bound be free.”
Oh thank you. I love people and I love to try and up lift the sprit of others it makes my heart happy. The lady that raised me taught me to always have a giving heart. And God will reward you. And no matter what you are going through there's some worse off than yourself. All of my immediate family on both sides and my husband are in Heaven. I just have my son and his 2 boys and my half brother as family. You have Steve and pumpkin. To keep you company. Steve ask you to Marry him . Lady marry him and make his heart smile. Lol. You hang in there and I'm keeping you in my prayers way in Longview Texas. . Love you lots 💗
When I married my husband Mike, he came with a Timnah Gray parrot, Tim. Tim was a delight and we were really sad when he had a stroke and died. (never sure if he was male or female) I love hearing about other's parrots!
Anne, thank you so much for everything that you have done for the MBC community. Your book, your work on "therightdose.org" project, your participation on FDA panels. Thank you for your support and for just being our friend. There were many times when I wondered how you could do it all! Bless you, Steve and Pumpkin. We will all meet on the "other side." Kay Wolfe
this may be too invasive a question or maybe it’s been answered and I missed it… but beautiful best bird, can you tell us what led you to the decision to stop treatment?
Lnlc, you ask an excellent question, and please bear in mind that my situation may be quite different from that of most others.
For nearly two years I'd experienced acute abdominal pain and could barely eat. These issues were caused by two factors: a constricted opening from my stomach to the intestines, and gastroparesis (whereby the stomach empties very slowly, and hence one cannot ingest much food).
All the while I was continuing to update my book, leading the Patient-Centered Dosing Initiative, and caregiving for my husband.
Then skin mets were found in Dec. 2022 and scans found progression in my GI tract, colon, lungs, and bones. I started Verzenio and when that failed, I began taking Xeloda.
The drugs caused severe diarrhea (I couldn't take anti-diarrhea medication due to fear of completely clogging a partial bowel obstruction) so the little food I could eat was quickly eliminated. I suffered from cachexia (muscle wasting) and malnutrition and was completely exhausted.
By the time I decided to stop treatment, I weighed 77 pounds and was rapidly losing more weight. There seemed no point in remaining on therapy, given the decline.
Right before starting hospice, my GI doctor inserted a stent to help food pass through my stomach. That, together with stopping treatment (which in turn curtailed the diarrhea) has enabled me to eat a bit more. As a result, I have been gaining weight and my energy is returning! I am also receiving excellent care from hospice and my stress level has dropped significantly. Spending quality time with my husband (whose condition has improved) and sweet parrot makes me so very happy, as does reading the extraordinarily beautiful notes I've received.
I recognize that this is a lot of detail, and I've described my situation at length because there is understandably so much anxiety about stopping treatment. In my case I simply didn't see any choice, and I remain thankful for my decision. I am making the most of every peaceful, pain-free day, and appreciate every wonderful message that others have sent with open hearts.
Thank you for the detailed description - this feedback and knowledge is what we all need and it is so wonderful that you continue to take care of us even now. Bless you!
my dear Anne, Thank you for telling me (us) about your life before and now and how you reached your decision
I think it’ll be an impending one for me as well
I was diagnosed in 1995 at 45 and then discovered to have mbc in 2013. Nothing easy about all the treatments but up until the last couple of years I was fairly active. I transitioned from a long term career, wrote and published a book, took ballet classes and spent time with my wonderful family.
Then a couple of years ago the cancer that had confined itself to my bones traveled to my lungs, liver and brain. I know this is the likely inevitability but it’s amazing how much life- daily and future- changed
There were several surgeries and treatments that left me whipped. The last one was Enhertu, which beat back the cancer but had me in bed two out of three weeks.
We stopped it in October. The oncologist said we had gotten has much as could from it. It’s taken some time but what a difference to be out of active treatment it’s scary because of the inevitability of what’s next but I’ve felt so much better that we’ve taken two family vacations
I’m now 72 and the drug they’ll likely suggest the next (I just got tested) will have the same kinds of side effects as Enhertu and I have to seriously consider whether I want to do that
I’ve always had an okay this is what I’ve been given so we’ll weigh out options make a decision and go forward outlook It’s tough realizing this late in my decades that this system has flaws and frankly many days I’ve just run out of logic and brave.
I’ve had a terrific life, mike and I have been married for 45 years and together for longer than that. We have two sons who are married to lovely women and three grandchildren. He supports me in all ways and frankly I’m not sure I could do the same were positions reversed
I know that’s more than most get in a lifetime snd sometimes I feel piggy wanting just more of what I’ve had
If I had to wrap it in a pkg with a bow I’d say at this point I want peace with whatever decision I make not there yet
This is a terrible decision to make for yourself but I do have excellent medical support and I think the path will never be a clear it one but it’ll be a little more defined as I go along and get more information I hope so anyway
Anne, I know based on what you’ve told us that you ll continue to enjoy your life in whatever capacity you can on a day by day minute my minute basis I wish it were different for all of us in this group- to not have the constant pressure of living to the fullest. you feel guilty when you don’t and sometimes it’s just plain exhausting
Thank you with all my heart for helping me through this. all the best to you and your lovely family ellen
Dear Lnlc, Your candor about your situation is profound and deeply moving, and I can sense and understand your inner struggle as you ponder the possibility of a new treatment (or not). In the event that it might make things a bit easier, perhaps you might consider this: If you elect to start another treatment and find it too difficult, you can speak with your doctor about changing the dose or frequency, switching therapies if feasible, or terminating treatment. Conversely, if you decide to forgo treatment (and/or enroll in hospice) you can change your mind at any time and resume treatment. I will share that I feel better now than I have in years, and inexplicably my skin mets have been shrinking even though I have been off treatment for over a month. That said, I have no idea how the cancer in my GI tract, lungs, and bones may be faring. All I know is that I am grateful for every pain-free day and every meal I can readily consume. For me, these days are like gold.
Admittedly mine is a very unusual situation. When I entered hospice I was hoping to live through April (a month that has taken multiple women in my family with cancer). Just recently my hospice nurse admitted that she hadn't expected me to make it much past that. Now perhaps we may look a bit further ahead. I consider whatever time I have remaining to be a precious and unexpected gift!
You raise a wonderful point about living life to the fullest. What does that look like to you? Lnlc, you have a happy marriage with a devoted husband, and you have children and grandchildren. You've enjoyed a career and are a published author. Each of those is very special! Perhaps at this juncture it might be appropriate to consider the possibility that it may not be about living life to the fullest, but rather what brings you the most pleasure in this phase of your life. And those pleasures might turn out to be surprisingly simple and readily within your grasp.
Whatever you decide, you have a wonderful community here that supports and cares for you!
I love reading this conversation between you and Lnlc, even though it feels a liitle strange to admit that. These conversations about this phase of life seem tough (why and when to stop treatment) but somehow they give me a litle sense of ease to read your thoughts on your own experiences. I've been having a hard time lately emotionally, as I find myself facing perhaps another time to change drugs a bit sooner than I had hoped (that's a longer story). It's good to reflect on what simple things within reach might bring us peace, and I struggle with what I feel like doing lately (not much at all), and all the things I feel I should and need to be doing! I was refelecting on this just yesterday, wondering if it's time for me to just "let go" of some of my own expectations, cut myself a bit of slack (I'm still working), to stop so much stressing. Thank you both for your open and honest reflections
13plus, these are questions and quandaries that so many of us periodically face. For example, would I feel at peace if I hadn't put our affairs in order to ensure that my husband and parrot would be as well-positioned as possible after I pass? Probably not! Although it was a stressor and I hadn't been feeling well when undertaking it, completing the documents made me feel that I'd done my utmost to look after my little family and - surprisingly - was very liberating when it was behind me! Indeed, not having completed them would have been more of a stressor.
Similarly, I have transitioned my leadership role in the Patient-Centered Dosing Initiative to others, which brings peace of mind that our work will continue. I wish I could do the same for my book, but it isn't practical for a myriad of reasons. In essence, I've tried ny best to leave nothing important unfinished.
Perhaps you might consider prioritizing and undertaking the tasks that might be considered essential for your welfare and that of those you love, and balancing those efforts with things that bring you joy, fulfillment, and contentment.
And, I got sidetracked there, but I wanted to add that I have enjoyed your many contributions to the posts on here Anne. And for your wonderful efforts on trying to change the approach to the dosing protocols and for your invaluable work on your book, which I'm sure will be an invaluable guide for many. It is great to know that you are feeling comfortable, doing so well, and wow, shrinking skin mets! Isn't this such a strange disease?! May you continue to do well for quite a bit longer!
Bestbird, you have been such an inspiration and comfort to all of us in this MBC group. Your wisdom and guidance have been such a gift. I am keeping you in my prayers during this latest transition. A heartfelt thank you for sharing your experiences with us and for being such a constant support to all of us.
Dear Bestbird -
I've been a member of this group for many years, but under different monikers due to a personal decision to back off/be anonymous. But your posts draw me back in to send my most sincere good wishes.
I thought of you just a few weeks ago, when I saw my onc and was asking for an increased dosage/frequency of "Cape"/Xeloda...she did a calculation based on weight and said that I was on what might seem like a light dosage but was actually weight appropriate.
And I thought to myself, "Bestbird made that happen".
My side effects are minimal but efficacy is good. I know you led this charge, for all of us. What a great contribution to our cause.
I wish you the very best and am grateful for what you've done for us.
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