The Straw That Broke This Camel’s Back

Posted on: August 13th, 2012 by
48

After a two-month self-imposed blogosphere exile, I’m coming clean. 

Over the last couple of months, I’ve been dealing with yet another scare that’s left me feeling like a James Bond drink: shaken, not stirred. And as if a train were getting ready to flatten me to Kingdom Come.

It all starts with pain in my left ribs.

And a “routine” followup appointment weeks later with my oncologist, Dr. B.

                                                           *****

He prescribes an anti-inflammatory for the rib pain, which doesn’t work.

He then orders a CT scan and bone scan; I schedule both for the day before my daughter and I leave for Florida to visit my parents and for some R and R. During the bone scan, the staff repeatedly ask me about my cancer background, about my surgeries, and all-things-cancer. 


Too many questions for my comfort. 

Something is wrong.

I do get a chuckle from one technician. Upon my telling her I’ve had a double mastectomy with reconstruction, she asks me if I am currently breastfeeding.

Once in Florida, I try to forget the drama. I try to forget about the tests. I’m here to have fun, after all. And for three days, I am at a tentative peace.

Dr. B calls my cell and leaves a hopeful-but-ominous message: “There’s nothing terribly, terribly, terribly wrong with you. I just have to talk with you about the bone scan.” 

There are too many “terriblys” in his message for my comfort.

My parents know nothing about what’s been going on. They love me, but they could not handle my breast cancer diagnosis and treatment years ago. I won’t tell them a thing, I decide, but just act as if nothing were wrong.

Finally, Dr. B and I connect. He is kind and doesn’t want to worry me, but he sounds uncomfortable. He talks about my CT scan, which reveals a number of “multiple healing fractures” in my back. He talks at great length about how symmetrical the “breaks” on both scans look and that if I had a cancer recurrence, it would not look symmetrical.

The dreaded R word, but there it is.

He continues talking about his extensive experience in interpreting the scans, how even if the bone scan report says one thing, he knows better and is pretty certain that I just have broken back bones. He is adamant that the bone scan report is wrong.

I ask what the bone scan report says.

He hesitates. He then says, “Metastasis to the bone.”

                                                       *****


I’m audibly silent. 

He tells me he’s very sure it is not because in this case, the CT scan gives the fuller picture and the broken bones are in the same areas as those that lit up in the bone scan. Besides, once a person has cancer, he continues, those interpreting diagnostic tests have a cancer bias.

I listen and listen. And then I listen.

He asks me if I had any injuries to my back that would cause my bones to break. I tell him that I don’t know, but I do. A major injury. 

Chemotherapy. 

Since chemo, my bone density has dwindled considerably.  Since chemo, I’ve had bone-related problems. Since chemo…[fill in the blank]

I ask him what the next step is. He tells me to take the over-the-counter pain killers regularly and see him in a month.

Do I have bone mets? Or do I just have bones that inexplicably break? I’m hoping for the latter. My body keeps betraying me, I think.

My parents call me to dinner. I wipe my tears and paint a smile on my face. During dinner, I laugh and joke and put on a happy, happy face. 

                                                     *****

But depression sets in the next day. I’m in a fog. I’m not proud of what I’m about to reveal: 

I sleep all day, knowing my parents can watch my daughter. I just want to be alone. But my daughter doesn’t want to leave my side, and she asks me what is wrong. I tell her that mommy isn’t feeling well and that I will be OK soon.

And this is true: I haven’t been feeling well. My back hurts a lot.

But I eat dinner with my happy face and then go back to bed. My mind and body are shutting down, and I need more sleep. The next day finds me swimming by myself at the retirement community pool and crying. Later that day, I envy the 80-year-olds who seem healthier than me. No matter how much I exercise or take care of myself, I reason, my body will always betray me. So I do the only reasonable thing: 

I buy a huge-ass Godiva chocolate bar and devour it at 1 a.m. 

The next few days are better. My parents, Ari, and I go to children-friendly places. We have fun at a turtle sanctuary. I keep busy. I see a rainbow (pictured in this post), and I savor it.

Today I’m seeing my oncologist for a not-so-routine followup. Prior to this latest installment of my life, I was working hard on finishing my book and a new website (details to eventually come). This news has temporarily derailed my work.

I’ve had a setback. Don’t we all? 

I’ve resumed work on the book and website. I refuse to allow this latest scare or any future scares to interfere with my hopes and dreams. 


A rainbow amid the storm clouds



I’m writing a book titled Calling the Shots: Coaching Your Way Through the Medical System. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com.

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

48 Responses to The Straw That Broke This Camel’s Back

  1. Julie Goodale had this to say about that:

    Aw, Beth, I’m so sorry to hear all of this. I hope you’ll get some answers today with your onc. Then you can figure out the next step – whatever that is. Big hugs – or rather, gentle ones! My thoughts are with you.

    Julie

    • Beth L. Gainer had this to say about that:

      Julie,

      You have been so kind to me. I so appreciate your support through this. I get a CT scan in 6 months. He is an excellent doctor and believes it is not worth worrying about, but as the patient, it’s so hard not to worry. In the meantime, I’m embracing your attitude toward exercise and life.

  2. Debbie had this to say about that:

    Beth:

    I was hoping you were just taking a much needed summer break…I’m so sorry. Good luck today. I’ll be with you in spirit and wishing you wellness in body and mind. All my very best.

    Survival > Existence,

    Debbie

  3. Dianne Duffy had this to say about that:

    Sounds like you need a second opinion…

    maybe a third….

    • Beth L. Gainer had this to say about that:

      Dianne,

      Thank you for your comment. The last time I got a second oncologist’s opinion he told me I would be dead soon, so I’m very hesitant to leave the one I’ve had for 11 years. Too many oncs in one pot can make a messy meal.

  4. Chrysalis Angel had this to say about that:

    Beth, good luck to you today at your doctor’s visit. I had fractured ribs and never realized they’d fractured; they still bother me at times. I’ve also had scaring in my lungs and one tech was thinking it was the R. If you’d ever like to reach me, please feel free to email me. Sometimes, it helps when we get something like that and have to do the big wait and see, while life is moving on all around us. Even support online can be of comfort.

  5. Chrysalis Angel had this to say about that:

    Beth, I just wrote you a paragraph and it deleted it all. sigh…I’d email you, but don’t see an email listed. I’ve gone through something similar, my ribs were fractured and I have scarring in my lungs. The tech thought it was the big R. They were wrong. If you’d like to share emails at all, let me know. Even online support during something like that can be of help.

    • Beth L. Gainer had this to say about that:

      Chrysalis,

      Thank you for reaching out to me. I can’t tell you how much I appreciate it. That must have been an exceedingly hard time for you when your tech thought it was a recurrence. My e-mail is at the very bottom of my blog, but here it is: bethlgainer@gmail.com. Feel free to e-mail me.

  6. AnneMarie Ciccarella had this to say about that:

    Speechless. Simply speechless. And waiting for what you hear today. Hoping for everything good. My very best friend has a similar situation with her spine. Actually, identical. She too has a cancer dx (rare thyroid but this is one of those cancer is cancer moments)…… The point? Hers aren’t bone mets. It’s fallout from the medication causing stress fractures. It’s not unusual and I’m hopeful based upon well…. I just need to be hopeful. (And in agreement with the doc about the “cancer bias” when reading tests in cancer patients)

    I was wondering where you were. I was thinking, “It’s summer, she’s enjoying her daughter.” I’m never assuming anything again. I’m here now, along with the rest of us…..

    MUCH love,
    AnneMarie

    • Beth L. Gainer had this to say about that:

      AnneMarie,

      I found your comment soooo reassuring. It’s good to know that I’m not alone, although it sucks that your best friend has to suffer.

      I am trying to enjoy my daughter, and I am having a great summer with her. I am struggling to deal with my paranoia, but I know that this is “normal,” whatever that word means.

      My onc doesn’t think it’s bone mets and is ordering a CT scan in 6 months to see if there are any changes. He doesn’t want a bone scan ordered, as he believes that will skew the results.

      Thank you for your concern, dear friend.

  7. Renn @ The Big C and Me had this to say about that:

    Beth, I’d been wondering were you were. I’m really sorry to hear about this interruption. I hope your doc gets to the bottom of it (i.e., biopsy) so you know exactly what you are dealing with, no ifs, ands or buts. Keep us posted, sending *very gentle* hugs!!

    • Beth L. Gainer had this to say about that:

      Renn,

      Thank you so much for your support. I appreciate the gentle hugs. My onc doesn’t want to order a biopsy until he sees the result of the CT scan I’ll be getting in 6 months. I’m hoping that whatever is going on will stop going on.

  8. BreastCancerSisterhood.com had this to say about that:

    Oh gosh, girlfriend!
    I agree with Dianne: You may need a second opinion. Your oncologist is right when he says a prior breast cancer diagnosis will always color the diagnostician’s lens. Reminds me of a scan I had a few years ago. The technician said, “Wow! You lit up like a Christmas tree,” then asked me the same leading questions about my breast cancer.

    Please let us know the next step. My bet’s on your oncologist & the “symmetry” signs of recurrence.

    XOXOXO,
    Brenda

    • Beth L. Gainer had this to say about that:

      Wow, Brenda. I can’t believe a tech would tell you that. It’s so unprofessional. My onc has ordered a CT scan in six months. I trust my onc, and I defer to his expertise.

      Thank you again for your support.

  9. Nancy's Point had this to say about that:

    Beth,
    It is so distressing to read what you’ve been grappling with. I’m so sorry. Please remember you have many friends “out here” to lean on. I’m hoping for good news from you oncologist. Nothing is routine after cancer is it? I’m sorry you felt “derailed” by cancer again of late, but I’m proud of you for not allowing it to interfere too much with your pursuit of your hopes and dreams. Keep us posted. Hugs.

    • Beth L. Gainer had this to say about that:

      Nancy,

      I’m thankful for my many friends in our wonderful online community. What would I do without you guys?

      Thank you for being so kind and such a great listener!

  10. Jody had this to say about that:

    I am sorry to see all this, Beth but please let me affirm the other’s opinions about another opinion; I know it’s a hassle – and another set of scans. Bone scans in and of themselves, my oncologist told me are problematic for many reasons. They are usually useful in in showing whether or not, for example, additional tests might be necessary. They can light up for arthritis, for example.

    There are other avenues to explore – but first things first. We’re out here supporting you.

    Very gentle hugs +1,

    Jody

    • Beth L. Gainer had this to say about that:

      Jody,

      Thank you for your support. What you say about bone scans is so very true. My onc doesn’t want to do any more bone scans for now on me because he thinks the CT scan shows the fuller picture.

      Plus he doesn’t want to see me hysterical again — ha!

  11. Kim had this to say about that:

    Beth–thank you for your authenticity and realness…the ups and downs of the cancer journey…who needs a roller coaster? Like, Brenda, I’m betting on the oncologist. Prayers your way!

    • Beth L. Gainer had this to say about that:

      Kim,

      Thank you for your concern. I’m actually betting on him, too. He’s an awesome doc, and he’s always been right. I appreciate your compliment on my honesty. It’s really the only way to be.

      Thanks so much.

  12. ButDoctorIHatePink had this to say about that:

    Hey Beth,

    I’m sorry you had this scare but your doctor is right – they always, always put down metastasis when you have had cancer. “Metastases cannot be ruled out” is the kindest way I’ve seen it written but it’s always there.

    Although I do have mets, I have had “scares” involving my lungs (my mets are in the liver) and my doctor has assured me that what they see on scans is not mets and as it turns out, he was right. I have had the exact same, unchanging spot for several years now. Mets don’t do that.

    Trust your doctor, he knows what he’s talking about. He’s seen this thousands of times.

    Big hugs to you and try not to worry.

    • Beth L. Gainer had this to say about that:

      Hi Ann,

      I so appreciate your comment. It has meant so much to me. “Scares” are the norm in the cancer world, aren’t they?

      I will take your advice and try not to worry. I must put my trust in my doctor, for he is the expert, not me.

  13. AllThingsCaregiver had this to say about that:

    Beth-
    I am so sorry to hear of this scare. I will be sending positive, healthy thoughts your way. And please don’t be ashamed to share that you took to bed and hammered down a chocolate bar. Seems like a perfectly reasonable coping mechanism.

    Best wishes,
    Tory

  14. Catherine had this to say about that:

    I am so sorry for the anxieties and fears you’ve been feeling and couldn’t share – that in itself is such a hardship, I can hardly imagine how you made it through that vacation with closed lips. Thank goodness for massive bars of chocolate. Hopefully your doctor is right and this isn’t about recurrence. Good luck at your meeting.

    • Beth L. Gainer had this to say about that:

      Catherine,

      Yes, it was hard to keep quiet during that time, but it would’ve been harder to share the news.

      My onc is great and I do think he is right.

      The chocolate was terrific. I should eat it more often!

  15. The Accidental Amazon had this to say about that:

    Beth, I’m with AM. I’m speechless. But I do have some thoughts. I don’t know enough details of your treatment history, but osteoporosis is common after breast cancer treatment, and that could account for your pain and the appearance of your spine on your scans. And it’s treatable.

    Now that I’ve spoken like a physical therapist, I’d would like to speak like a friend and cuss. A great deal. I’ll refrain, but you may fill in the blanks with your own favorites. Would ‘shit’ be okay? I am sending you a massive hug. Please, PLEASE keep us posted. xoxo, Kathi

    • Beth L. Gainer had this to say about that:

      Hi Kathi,

      Yes, I’ve had osteopenia and now maybe osteoporosis after my breast cancer treatment threw me through the shredder. Some arthritis also showed up on the bone scan, and my onc was not concerned. He truly doesn’t believe it’s mets.

      Cussing is perfect. “Shit” is perfectly appropriate. In fact, this may be my new favorite word: shit, shit, shit, shit.

  16. Praelior had this to say about that:

    Sorry to hear this news, Beth, but I’m reassured by what your doctor told you. Lots of love to you from my little corner of the blogosphere.

    P.

  17. Susan had this to say about that:

    Beth I am curious what you are told today. I had 3 suspicious bone scans with my ribs lighting up like Christmas trees and by the third one I demanded a pet scan from my oncologist because I couldn’t stand the results and I wanted to know for sure. At first she said it was difficult to get approved and I told her I would wait till it was. Thankfully, my pet scan was fine and there were no mets.

    • Beth L. Gainer had this to say about that:

      Hi Susan,

      Good for you for advocating for yourself!! You took a stand and got what you wanted and needed. Excellent. I’m glad there were no mets.

      OK, so this is what I was told on Monday: that bone scans don’t give the complete picture and that many things make the scan light up, including healing broken bones, which is what my doctor believes is happening. I get a CT scan in six months for a followup and hopefully there’s no change. It could also be a benign tumor made up of bone and cartilage that usually happens in younger people, but doctors don’t know why. If whatever it is grows, then it may be time to do a biopsy. For now, my onc is banking on the fact that it is nothing to fret about.

  18. Stacey had this to say about that:

    Hi Beth, I’ve been thinking of you non-stop since I read this the other day. I’m going to focus on what your oncologist said. You’re right, he would know, probably sees this stuff all the time. If he were concerned, you’d know it. That being said…I understand the fear and hate that you’re dealing with it. Cancer f’ing sucks. It’s always something and you have every right to hide under a blanket if you choose. Hang in there, you aren’t alone. Hugs xoxo

    • Beth L. Gainer had this to say about that:

      Hi Stacey,

      Thank you for thinking of me and your supportive words. Yes, I trust my oncologist; he is the expert. I just sometimes wish that doctors could see things from a patient’s point of view. He tried his best to reassure me, but I was still doubtful when I left the appointment.

      Oh well. This cancer thing is a life sentence.

  19. Terri had this to say about that:

    I am sending you big ASS hugs. I’m sorry for the scare. It is never easy and this road we walk f-ing sucks because it’s so easy to take a mental left turn into worst case scenario territory. I am keeping you in my thoughts and prayers and I’m confident that your onc knows his stuff. In the meantime, you have full permission to use expletives whenever needed. Shit. Fuck. Damn Damn Damn Cancer. xoxo

    • Beth L. Gainer had this to say about that:

      Thank you, Terri, for your comment. You are right about the road we are walking on never being easy. Unfortunately, my mind has gone to the worst-case scenario. Then again, I have also been able to pull myself out of the funk and try not to dwell. It’s a damn roller coaster — this cancer stuff — that we must walk on. And as far as expletives, yes: Shit. Fuck. Damn. And repeat….

  20. Jan Baird Hasak had this to say about that:

    Oh, Beth! This is so hard. I can identify with every word you typed. Like you, my mind always goes to the worst-case scenario when any new ache shows up. And like you, I envy the 80-plus-year-olds in perfect health. I’ve taken good care of my body my whole life, and what do I get as a reward? Like yours, it has betrayed me. I’ve been betrayed by a manager, a husband and my body. What or who next? Anyway, just know we are all there with you and for you, Beth, and love you very much. xx

    • Beth L. Gainer had this to say about that:

      Jan, thank you for your support. It is, indeed, a very trying time for me. I know you have had health issues as well, and I hope and pray you no longer feel those pains. Love to you, too!

  21. gillian had this to say about that:

    Well I can understand your anxiety and I am sorry you have had to go through this. Or are still going throught it, really. But if the oncologist has suggested a CT scan IN SIX MONTHS, I reckon you can take a deep breath for now. Really. Will drive yourself demented if live at a level of heightened anxiety. Try to relax for the next few months.Exercise, do yoga, whatever… enjoy your daughter. And keep writing; it will help.

    • Beth L. Gainer had this to say about that:

      Gillian,

      Thank you for the suggestions. I do find exercise so very relaxing, as well as journaling. However, I cannot really rest easy because six months in my opinion is too long to wait to find out what’s going on with me if anything can ever be discovered. I’m going to a bone specialist who may be able to shed some light on this.

      Thanks again for your comment.

  22. Kathleen Hoffman had this to say about that:

    Beth,
    I’m so sorry that you have had such a scare…I agree, I wouldn’t be able to rest easy either and am **so** glad that you are going to a bone specialist and not wait six months…You are in my thoughts and prayers.

    • Beth L. Gainer had this to say about that:

      Kathleen,

      Thank you so much for your kind thoughts and prayers. Yes, I’m going to try taking my medical destiny in my own hands (what I can control, that is). Thank you for commenting.

  23. lopsided blogger had this to say about that:

    Crap, I hate the scares! So sorry you are having to endure this. I know you know the right thing to do for you, so I wish you all the luck in the world in getting through this quickly and healthfully. I’m glad you have your daughter to help get your mind onto something truly pleasant.

    • Beth L. Gainer had this to say about that:

      Yes, the scares really suck. We are not alone; it is the price we have to pay for entering Cancerland — involuntarily. Thank you for your support. It means a lot to me.

  24. Susan Zager had this to say about that:

    Beth I had a scare with a bone scans that was repeated over months and I too have osteoporosis from chemo. My ribs kept lighting up like a Christmas tree on my bone scans. I finally said to my oncologist in a demanding way “I want a pet scan.” She said they are hard to get approved and I said I would wait as long as it took because I couldn’t take worrying if I had mets in my ribs. My insurance approved the pet scan and it was not cancer. My ribs were fine. I am not sorry I demanded the test and it really helped not having to keep waiting for the same bad test results. I was very clear with my oncologist that I was very anxious about this. Of course though I know all cases are different and I did have a recurrence right before the bone scan, but it was a local recurrence that fortunately was not mets, until the bone scan put that in to a question. That may have helped me get the pet scan approved, but I don’t see why you have to wait six months for a cat scan which is much less money than a pet. My friend also had a suspicious bone scan and she got all of the other tests approved right away. There are a lot of false positives with them which is what I am hoping that’s what your is.

  25. Susan Zager had this to say about that:

    Beth I just reread your other post that had a link to this. How terribly unsettling. I am so hoping that the bone scan is wrong. I had a bone scan three times where my ribs lit up like a Christmas tree and my oncologist kept telling me to wait and repeat the test in four months. By the third time, I literally demanded a pet scan as I couldn’t take the anxiety anymore. She said they were hard to get and I said I would wait until the insurance approved it. I am so glad I had the pet. It proved that all was well and the bone scan gave me false positives. I had no idea you were waiting for this test when you wrote your post about your bones. I am hoping and praying for you that you are ok. I also would consider asking for another test to find out what’s going on. This is too scary. I am sorry I didn’t know about this when I commented before.

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