Sandy emerges from a dip in the cold Pacific Ocean

We had an intense and beautiful trip to the Oregon coast. And this is so difficult to write… tears and waves of emotion have been pouring out of me for days now. Sandy’s health has declined dramatically in the past week. Every day brings another big step down this journey. She is not in pain, thankfully, but she is increasingly confused and having some cognitive changes. Her vision loss has increased and she has more difficulty walking and controlling her left side. But of course her fighting spirit keeps her going. She is running on about 2 hours of sleep a day. She doesn’t want to sleep through these last days. She has more energy than I do. She is still enjoying getting out to our Garden of Friendship, usually in the very early pre-dawn hours and watching the sunrise together. She spends a lot of time in her special places in our home - her favorite chair usually - looking at photos, her special jewelry, and books… and always playing music that she loves.  She is still strong-willed and wants everyone to know that they better visit her with their “Lance face” on - she doesn’t want any tears and puppy dog eyes around her. She is living these days, however few may remain, with her typical spirit and love of life. Today she is having a spa day treatment here at home from a couple of women friends. And loving every second of it. We also are saying farewell to our son Cameron who is going back to his home Hawaii with Sandy’s insistence. She wants him to get back to his own life after being here about a month. They have had a wonderful time together and a lot of great talks.

Thank you all again for the outpouring of love and support. It is helping to make this painful journey one with beautiful moments as well.

With a breaking heart,
Dan

Sandy, with my insistence (and a strong suggestion from the hospice nurse) is trying to pace herself and conserve strength. It doesn’t take much to wipe her out physically and emotionally — a short walk down our road, a visit from a friend, a rough night of sleep. But she is learning to nap, not an easy thing for her. Since she is having difficulty tracking days of the week and time of day, a nap can really throw her off and be disorienting. We know that a lot of people want to visit Sandy, but we are having to make visits short and far-between. They are just too exhausting for Sandy right now. You know how she is - wanting to help others feel better before she makes herself feel better. So please continue to honor the “Do Not Disturb” sign when it’s up.  We are staying close to home and hospice nurses, but Sandy, Cameron and I (and our two dogs) are going to the coast next week for some ocean therapy.

Cameron and Sandy

And, dear friends, we had some thoughts we wanted to share with you as this journey continues. Recently, many folks who have just found out about Sandy’s prognosis have become panicked and desperate to help. People have pushed their religious / spiritual beliefs on us, or insisted we try this or that cancer cure recipe concoction, or told us how we should handle this situation. We realize that this all comes from love and concern, and with the best intentions, but we don’t need to be diverted or spend energy defending our choices.

Sandy was diagnosed in 1999 with a terminal illness - we are not rookies at this. We were told in 1999 that what has transpired in the past few months would happen someday, so it is not a surprise that it has. We have researched this disease extensively and Sandy has had some of the best possible medical care available. She is a 7-year survivor — seven years we would not have had together otherwise.

Sandy wants you to know that this sacred journey, which we decided to openly share with you, has some parts that cannot be shared. There is good, bad and ugly to this and to make it through this we must pace ourselves and have some boundaries respected. Please understand this — we don’t want any suggestions for how to cure Sandy’s brain tumor. There is no known cure for this type of cancer, and hers is very aggressive. Her best treatment alternatives have been used. Our knowledge has given us power, so don’t undermine our decisions. This part of the journey is so impossibly difficult enough. Having to hear alternatives at this point, however well intentioned, only does us harm. She is only getting treatment and medicines now to keep her quality of life as good as possible for as long as possible. But just because treatment has stopped… hope doesn’t. We are living life and are excited about and anticipating what’s to come.

Because we do not belong to an organized church, some of you may think our spiritual strength is lacking. The opposite is true. Our spirituality has been strengthened by this cancer journey. Sandy and I have a deep spiritual faith and we pray regularly. Right now we are praying for the strengtrh and peace to enjoy this journey. And we appreciate the power of all your prayers - keep them coming. But don’t ask us to worship your God or adapt our lives to your spiritual beliefs or methods.

We are sharing this journey openly for two reasons — we knew it would help us, and we hoped others could learn from it. As we strive to continue finding peace, strength and balance these difficult days… we hope you will too.  “Life is an hourglass glued to the table…”  Carpe Diem.

Thanks again for all the love and support - in its many tangible and intangible ways (and some edible ways!)
Dan

Have Been Greatly Exaggerated.”  –Sandy Beardsley (and Mark Twain)

Since finding out the results of Sandy’s MRI on June 30 — and realizing that there is nothing more that doctors and medical science can do for her besides lessening symptoms for as long as possible — we have been reeling between emotional highs and intense lows needless to say. We have had a lot of family and friends visiting the past week. And seeing everyone and all that love and support has been great - a real uplift to Sandy - though at times exhausting. She is feeling a bit better now that she has been off the chemo for over a week. She has more energy, though tires easily, and has a good appetite. She is still moving slowly, usually with the aid of a cane or hiking poles. Her left side deficits - weakness, lack of total muscle control, peripheral vision loss - are still present but lessened since she has been taking the Decadron steroid to alleviate brain swelling. On Thursday, and again today, we met with Hospice nurses. They will be available to assist Sandy and I for the duration of this journey. We are still hoping for a miracle, but also facing reality.

And we are also doing our best to continue to live life and have as much fun as possible…. such as on Saturday night when we joined at least 20 of our friends and family for a beautiful summer evening of food, wine, music, and a bit of dancing outside at a local winery (St. Laurent - a wonderful place). One of our favorite musicians - Kevin Jones Band - was performing. Sandy and I had a great time and she was looking so beautiful and radiant that the bad news from a week ago seemed a long ways away for a little while.

We are also looking forward to the LiveStrong Event in Portland on July 30. The “Friends of Sandy” team now numbers 13 and growing. Sandy and other friends are going to do the 5k walk, while I and others will be riding bikes anywhere from 40 to 100 miles. If you can, please make a donation to our team and the Lance Armstrong Foundation at the link to the left. When you get to the website, donate on Sandy’s page or click “My Team Page” to donate to other team members.

And of course we are still enjoying visitors to our home - though we are trying to pace ourselves and occasionally put out the “Do Not Disturb” sign. If you live far away, please call to see if Sandy is up for a visit. And the Gnome is usually hanging out in the garden and likes a little company…

Illustration by Heather Murphy

We would also like to thank everyone for the huge outpouring of love and support. And also thanks for the gifts of food, wine, deserts, flowers, music, cards, emails, fireworks parade, dancing and of course the howling at the moon circle. Your love encircles us and strengthens us. We are so blessed.

Good night,
Dan