Stand Back

I’m really frustrated, and I’m really upset.

First, though, I will share with you some good news.  The MRI showed no sign of cancer on my spine.  It also showed no fractures (which was a concern because of the long-term, high-dose steroids).  I was very relieved.  And then I was frustrated.

The call from my oncologist woke me from a nap.  I know exactly what he said, but I didn’t have my wherewithal to compose educated questions.  His instruction was to continue to manage the pain with the prescription and over-the-counter drugs I have.  When I asked what else I can do, he said he could refer to an orthopedist or chiropractor.   It was past 4:30 pm when I was ready to ask my fully lucid questions, so now I have to wait until Monday.  Here is what’s rattling around in my brain:

He commented on my spine but not the discs.  Does that mean he only looked at the bones?  Or does that mean he thought everything looked fine?  Of course, that’s not his field of expertise, but wouldn’t the radiologist have noted any abnormalities?  And if everything really looked fine and this is completely muscular, what in the world is going on?

I spent the better part of autumn knowing something was wrong and being told I was fine.  I’m so upset because I don’t want to go through that again.

I know how injured, pulled muscles feel.  I know what it feels like when you’ve coughed for weeks on end and have sore muscles in your back.  This is different.  Something is wrong that I can’t stand for more than a couple of minutes.  I’m not making it up.  I’m not imagining it.  I’m in pain, and I need someone to figure it out and not blow me off!

Cancer was already turning my life on end, but now I can’t even go anywhere unless I can make it from the car to a seated position in less than five minutes.  No shopping in small stores, no walking around a bookstore, no casual strolls.  Even at home, by the time I use the bathroom and refill my glass of water, I need to sit down.  It is so incredibly depressing.

Now if you’ll excuse me, I’m going to mop off my keyboard and hug my bunny.

5 responses to “Stand Back

  • Linda

    I am so happy the MRI was clean. Yet, I am so sorry you are in pain. I experienced a lot of frustration with the doctors who treated my sister. It’s like the Oncologist is only programmed to do one thing….and in order to feel you’re being fully treated, you have to have someone advocate for you…especially if you are not feeling well enough to put all the effort into it.
    The weakness you feel is normal I think. But the question is, are you getting enough attention? Do you need a visiting nurse or physical therapy or massage that could help with pain and/or make you feel better? Can you ask your oncologist for the names of other doctors you could see? It wasn’t until I emailed my sister’s oncologist and told him how I didn’t think my sister was being cared for fully…that she was getting depressed and her fear of going out was creating that as well. She was a New Yorker who was always on the streets. Being cooped up in her apartment was a downer for her. When she needed to be on oxygen it really freaked her out, yet they didn’t suggest portable tanks…which would help her be more mobile…it’s like if you don’t mention it..they don’t bring it up.

    In NYC, at the beginning of her diagnosis, my sister was advised to see a doctor who was from China (Harvard Medical School) who added other therapies to cancer care that traditional oncology did not cover. He practiced at Sloan Kettering before going out on his own. She didn’t follow up with him as she needed to…her husband wasn’t very proactive about encouraging it yet it seemed like it would have helped her. Biofeedback. Massage. Herbal therapies…all in addition to the chemo and radiation….

    Have you every heard of Kris Carr? She wrote several books and also has a documentary out called: “Sexy, Crazy Cancer.” She also has a website. Her book gives a lot of perspective on all of the options you may have to get the best care. It truly seems multiple opinions is a good option. If you aren’t satisfied with what your doctor said or how evasive or “clinical” he seemed to be, perhaps you can get another opinion. Trust your gut. Don’t settle for one opinion. Do you have anyone who can help you? What city do you live in? Linda

    I look forward to your posts. I love your voice on paper. I feel for you and want you to know that there’s a lady in Richmond, VA who is praying for your well being. I have a 27 year old daughter and a 20 year old son. It’s the Mother in me.

    • Jessica

      Hi Linda,

      Thank you for your reply. It’s so sweet that you look forward to my posts. I actually like my oncologist a lot, but I know that he is a medical oncologist and don’t expect that he would treat things that don’t seem to be cancer related. He did mention that he could refer to an orthopedist or chiropractor, so that is indeed what I will ask him to do. One of my friends is also getting me the name of a respected orthopedist in the area.

      Indeed, having an orthopedist look at the MRI and examine me will be my second opinion on this particular matter. Yes, my boyfriend is very supportive and here for me whenever I need him. He has been helping with around the house tasks I can’t handle right now. And my neighbor was kind enough to shovel my snow this morning.

      I will let everyone know how I make out at the beginning of the week. Hopefully I’ll get an appointment with someone quickly!

  • Julie

    Congratulations on the clean MRI! No wonder you are frustrated, though, with such pain :.( I don’t have any experience or knowledge to offer, I’m afraid — just wanted to say we are thinking of you and sweet Blossom. Thank you for sharing your blog with us.

    Sending love, Blossom’s friends Molly, Liam & Arwen and their mum, Julie :.) ❤

  • Carol

    I have read this a few times and wonder about Drs. I know they are human and some things they just don’t know but could they at least say so or offer some ideas for consideration. I don’t know if you can have a second opinion, or at least to review the scans, or test or whatever they took to decide there is nothing wrong with your spine.

    I would assume that the Dr. meant everything about the spine, bone, discs, etc. when he talked to you. I would write down all my questions and call them. You’re allowed to think of things after the meeting and time to digest the report and get your thoughts together.

    I can’t imagine how difficult this must be for you. Just keep hugging the bunny, Blossom needs your love.

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