Last Monday was my quarterly check-in with the oncologist, and I had hoped that my PSA test results would come back “undetectable”—no evidence of disease. Not so. The oncologist conditioned the results with (a totally appropriate) “if it’s real.” One data point does not a trend make, especially when this particular data point is so mercurial and the amount so scant: a barely detectable PSA level of 0.04 ng/ml.
But it’s most likely real. And that’s not good because, given where I am in my cancer journey, detectable PSA is evidence of disease. We’ll check again in three months and go from there. Stay tuned.
Assuming it’s real, though, it means that the odds prevailed, and my salvage radiation did not work.
I’d like to detour from my cancer journey to (sadly) note the passing of a high-school classmate and friend, Sandi Sheff Bernstein. Sandi died April 14 of non-Hodgkin’s lymphoma after two contests with breast cancer. When I wrote on January 17 about the fear of recurrence that occupies all cancerians (A Stalking Circling Menace), I noted that for my friend, Sandi, recurrence was “the bear in the back room,” trying to get out. Her bear, unfortunately, did break free.
Sandi was both classy and courageous. When I disclosed in March 2011 that I have Stage 4 prostate cancer, Sandi re-entered my life—almost 50 years after our high school graduation.
It was worth the wait.
“(Cancer) is a good thing, in a way,” she wisely wrote upon her re-entry into my life. “It reminds me that life is on loan to me and I should use that time in a good way. I want to be seen as a giver and not a taker. I am very fortunate, I know, to have been a survivor twice. I would love to follow your journey and commend you on how you are handling it. Sending you my prayers and good wishes, try to make the journey work for you.”
Later she would tell me: “Attitude is so important. Fight that cancer. Never give up. And when you are well again, remember all you have learned along the way.”
In addition to her comments on my blog site, Sandi and I also had a year of email exchanges about our cancers, which were, really, conversations about life. She grasped that cancer can kill you, but only you can decide to quit living.
“So back to the bear in the bedroom,” she wrote with prescience—but without fear—in what would be her last email to me. “He’ll win this round. I just don’t know when. One thing I won’t let happen is let the bear win until the final round. I can live with him, side by side, but I still plan on enjoying the life I now have with family and friends. He’ll just have to settle on being in the back bedroom until my time has come. I won’t let my attitude be affected by this. It is still my life, and he can’t claim my attitude unless I let him…”
Shalom, Sandi. Shalom.
Your tribute to your dear friend Sandi brought tears to my eyes. I’m sorry for your loss.
In the thyroid cancer biz, the cancer marker is considered undetectable at .5 ng/ml, which is the lowest that can be calculated. That’s “if it’s real” too, since “undetectable” is commentary on the state of technology, not necessarily on the state (or not) of cancer cells. I hope your lab report is just a blip on the radar, Bill, and the PSA behaves itself. I will, as you asked, stay tuned.
A comment on the state of technology, indeed. Like NED. Not cured, just NED. I keep hoping that the surgeon accidentally left some healthy tissue behind, but then I remember the reason I went to him is because he is world class! So that straw can’t be grasped at. We’ll now just work at making the PSA behave! Thanks, Andrea. Hug, B
I’m so sad to hear of the loss of another one of our Warriors. She sounds like she was a wise person, and there’s too little wisdom in the world as it is. A for your results, I’m just going to refuse to believe in them until forced to do otherwise, Bill. We need to keep our wise ones in the world and going strong. Hugs-Ann
Yes, too much information and not enough wisdom in the world. Thanks for being one of our treasured Wise Ones. Warrior on!
So sorry for your loss. A good friend told me a special thing this weekend. When she lost her husband she was very sad but felt she should live life to its fullest to honor him. I think that is a very tough way to handle it yet so respectful and real. I am going to visit my mother in law this week who has been battling non hodgkins lymphoma for 25 years. Since she is 82, the doctors are treating her as if she isn’t a fighter and it is the most horrifying thing I have yet to see. I respect what will be will be and want her to have peace, but I don’t want it to end because the stupid doctors are going full force Obama care. Sorry to vent, I know the next three months will be torture, as always you will be in my prayers. Peace and I apologize for speaking my pain.
Sharron, I am sorry that you feel that your mother-in-law’s treatment has to be described in politics. My own mother-in-law has been hospitalized for various heart ailments at age 94, and she is being treated far more vigorously than she wants. The nature of the treatment is determined by the doctors, not by the Obama administration. Our health care system needs a complete overhaul, and the current law did not do that; but its destruction will not change your doctors’ approach. If you or she are unhappy with what they are doing, talk to them and explain what a fighter she really is!
No need to apologize for speaking your pain—that’s why we’re here for. I admire your friend for the courage to live life to the fullest even after such a loss. What a tribute! Peace to you, too.
Dear Sharron, No need to apologize; speaking your mind is part of what makes BFAC such a wonderful community. It is horrid to see doctors treating someone, as you said, as if they aren’t a fighter. That’s a whole mountain of pain to get through that with someone you love.
I agree with Helen’s comments; it’s more likely the doctors’ determination. For decades there has been “Managed Care”, which seems to discount the patient as fighter. (It happened to my dad, during the Bush years & he had good insurance.)
I hope your friend’s doctors discover a change of attitude toward your warrior friend.
This was so beautifully written and really put me into a new prospective. I have been trying to remain positive but your post has me realizing I need to think like Sandi! My bear is lingering in a closet and I plan on keeping him in there.
hugs to you!
Sandi was a fighter, indeed, and I’m sure it extended her life—2 x breast cancer and then the lymphoma. She was a real inspiration for us all, and I hope her words have helped you. That would make her happy.
Bill, that is very beautiful.
Thank you for helping me to explain to my oncologist why “you look great” is not enough to make me stop thinking about the bear in the backroom.
You can look great, and you can feel fine, but the bear is always there. I met a guy once at a prostate cancer conference, and he was 15 years NED since treatment—and his prostate cancer had just come back. I don’t know that we ever stop sensing that the bear is back there. Hug, B
I am honoured to be invited here on BFAC to pay tribute to your dear friend, Sandi. I wish I had known her too, but I suppose we are all connected anyway. I thank you for sharing some of her with us here.
I like this notion f the bear in the back room. I’m treating mine like a little kitten right now – I hope that won’t prove tomorrow at my appointment to have been in vain. Still, as Sandi says, attitude counts for so much. How big can that bear get if to me it’s really only ever a kitten?
I love your posts, Bill. I hope that PSA score remains just a little tag on some document somewhere and nothing that affects your being in the world.
So glad to read that you had a happy visit to the doc the other day—woo-hoo that the kitten is on lockdown. Beaming all best karma to you that kitty stays there! “A little tag on some document somewhere”—what a grand thought! Thank you for that thought. Hug, B
I love Sandi, she sounds amazing and I’m sorry to hear about her bear getting free. I hope that this test result is some kind of meaningless glitch. I know that this wait-and-see stuff is a lot easier for them to say than for us to do, so I hope also that you can put it in the back bedroom. Praying for 0.00 in August.
I was grousing once at the cancer clinic about wait-and-see, when my audience of one replied: “Waiting is living, and that’s what we want.” I thought, “Oh.” It doesn’t change the anxious reality of waiting, just puts it in a new perspective. Thanks for the prayer—a meaningless glitch would be excellent news, indeed! Hug, B
Bill…I’m sorry for your loss…I am printing your post out as the quotes that you gave are words to live by…thank you. xo
And that is the ultimate tribute to Sandi—that she touched the life of someone she never met! Thanks, Rachel. I’ll share your post with her family so they know just how Sandi lives on in our hearts and minds. Big hug, B
What a nice tribute to your friend. I am so happy that you two were able to connect again, after all those years.
Life sure can be funny. It is true, that some good always does emerge from “bad.” BTW, what a poignant photo, the tubes of blood . . . how telling.
You, my friend, keep smiling. (easier said than done sometimes)
At blood draw, those two tubes seemed so innocent. Now I look at them and ponder the unwanted reality they carried. Sandi ‘got it’ that even in cancer there are things to appreciate. While I hate the cancer, the cancer experience can bring many wonderful insights—and people—into our lives, people like Sandi, you and everyone here at BFAC. And isn’t the weather glorious?! Hug, B
I’m sorry to her the crap in still highing in the
corners like a rat. I will get my results in June towards the end. Keep your head up. Faith is something we will never understand but every so offen it works in are favor. You need a break and lets hope it’s your turn.
Thank you for letting us get to know something of your friend Sandi. She sounds so grounded and poetically direct, “the bear in the bedroom”.
Ah, forgive me, but the mention of bear reminds me of the Steven Colbert show, where the Threat Down always has bears as the #1 threat we face. In my rather twisted mind, these 2 things go together. Great minds think alike. Your Sandi was a gem I have no doubt. She was clearly a superior warrior.
Condolences for loosing your friend Sandi.
I may be days behind, but I get here and I’ll be watching for your updates. Heck, I’ll also be watching for your fine posts. Always a treat to read, Bill Curry …no matter what.
...Oh, count me among the PSA-reading-blip crowd, over here having a “Go Bill Party”.