Paranoia, Pain, And The Tumor’s Return?

One of my fellow brain tumor fighters tweeted this yesterday:

‘With a brain tumor any headache, item forgotten, stumble, slurred word or vision issue can cause fear.’

I have an MRI next week and the anxiety has begun. I would have been anxious as it was, but I’ve also spent 3 days this week with migraines. I feel like I’ve been forgetting things more than usual. I’ve struggled to find some of my words. Basically, there are all kinds of reasons for anxiety to set in – the question is whether it’s warranted. Brain tumor survivors (if we’re alive, we’re survivors in my mind – no pun intended) are constantly paranoid about anything out of the ordinary. But maybe we’re just looking harder for the signs that the other shoe is about to drop.

The evidence that points to paranoia and anxiety not being warranted:

– I’ve been sleeping like crap. The itchy dog with a new diet wakes up in the middle of the night scratching or needing to go outside. I’m a light sleeper (having babies will do that to you) so I’m awake at the first jingle of his collar or the slightest whine of request.

– My migraines arrived just in time for a visit with my parents (sorry Mom & Dad). My biggest trigger is hormones, so there’s nothing to avoid in my daily diet or activities that can prevent it. All I can do is take the drugs and ride it out, praying it doesn’t last too long. Well, it did last too long…but when it’s a migraine, 3 minutes is too long – 3 days is a new level of hell.

– Allergies kicked in and I’ve been very congested and headachy. My face hurts, my ears hurt and there’s not a damn thing I can do about it except use my neti pot and slather on some Vick’s Vaporub. Sleeping with my head elevated doesn’t help my first problem, but maybe it helps prevent a sinus headache? It feels like I’m fighting against myself when all I need to do is lay down to sleep and yet laying down causes more pain and less sleep.

– I’m still recovering from sleeping on the ground and a crappy mattress a few weeks ago and my back is slowly getting itself back into order. For anyone who’s experienced a pelvis and sacrum out of alignment, you’ll know the pain that comes with every step. Add a rib out of alignment and the pain will drive you to tears. And there’s no magic trick to make that shit go away.

With the sleep deprivation, the migraines, and the constant pain it’s not surprising that I’m a little more forgetful or I struggle to find a word or two more often than other weeks. Right?

I’ve got a pretty high pain tolerance, but head or back pain is all consuming, you can’t escape it. It’s pain that changes your personality. It’s relentless pain that drives you to distraction. I don’t know how people living with chronic pain do it. While 3 days feels like a lifetime, I know my migraines will go away. I know my back pain will go away. I know I will get back to a normal sleeping pattern without being woken up by an invisible arrow being shot through my ribs (I’m still working on the itchy, farty dog.) It may not feel like it will end, but when I blow away some of the fog created by the pain, I can remind myself it won’t last forever. For those people suffering extreme chronic pain, it’s got to wear them down, physically and mentally.

So, I’ll count my blessings, breathe, and remain positive. My MRI will be clear. We will find a diet that minimizes the dog’s itchiness and gas. My hormones will level out and my migraine will retreat (when does menopause arrive?) My pelvis and sacrum will cooperate and stay aligned as best as they know how. My allergies will pass and we’ll breeze through cold and flu season unscathed.

I would, however, like to request a button that indicates whether my severe headache is due to migraine, sinus congestion, muscle tension or a brain tumor recurrence. If someone could get right on that, I’d appreciate it.

12 thoughts on “Paranoia, Pain, And The Tumor’s Return?

  1. What your friend wrote on her twitter account was dead on, as you and I and every single GBM survivor knows. That seizure I had, though I hoped was due to the 1 tapered anti-seizure med, sent me straight to the jackhammer (MRI). It came back as clear as mud. The doctor said the tumor was stable, but the MRI read there was an irregular nodular enhancement surrounding the tumor not previously seen and that close attention is strongly advised. Umm…doc didn’t tell me THAT. More worry. If you ever get a petition going for that button, I’d like to be second to sign! Meanwhile, my mom’s hormonal migraines were treated with Fiorinal and she swears by it. We solved the middle of the night dog jingle by taking her collar off before bed. I *really* wish I had a cure or a suggestion for your back, ribs and allergies 😦 Take care of yourself and you have my prayers for a clear MRI.

    • I’ll let you know if I get any takers on that button challenge. 🙂 I’ll ask my doctor about Fiorinal – I have a feeling they may get worse given my age.

      Feeling much better today – back is cooperating!

      • So glad to hear your back got the memo: It isn’t allowed a vacation and there are no sick days! 😉 Had another miniature seizure while out to lunch with my mom yesterday. Figured that was enough excitement and skipped dessert. Never a dull moment!

  2. This might sound funny ro ask a vegan, but is your dog on a plant based diet also? We removed chicken from our lab’s diet (found salmon dog food at costco) and it worked for awhile on her allergies. Now our vet is recommending to move to plant because the stuff that goes into the food just isn’t good for them.

    Good thoughts for a clear test. Things will get better. Earplugs or quiet tags ( that is the brand I think) to keep dog tags from jangling. 🙂

  3. I relish your courage and honesty. EveryDayLeft is how I live. The notion of each day being special resonates with me. I am a trauma surgeon, and I see the transient nature of heath and of life, and the capriciousness of events that change everything.

    Your strength, your candor adds a depth and a richness to all if our experiences, to all of our existence. We all struggle together. If you stumble, I offer my hand, if I quail, your words bolster me.

    Thank you, for your gifts, for your vulnerability. It binds us, and in that, strengthens us all.

    I do not know you, but I know I love you and all your family for their blessed humanity. No matter what, you will live forever.


  4. Karen,

    While my experience does not compare to yours, I think all of us – especially those with young kids- get the anxiety, the insomnia, and the hypochondria before each check up. I just had my 3-month check in at the Cancer Center. Even though that place was a God send, I want to throw up every time I walk in there. There’s so much to lose. I’m sure you’ll get good news like I did, but I don’t blame you for worrying about it. I think it’s the most normal thing we do in an abnormal situation. Women our age are not supposed to think about their mortality on some weekly or monthly schedule, and then get back to the business of pretending like none of it ever happened. You are not crazy or alone, and you are probably just fine. PS – my gassy, itchy dog has been so much better on a grain free diet – blue buffalo salmon. We also take the collar off at night. Good luck!

  5. How far out are you again from your surgery? Are you on any headache meds? I have been on gabapentin and topamax since my surgeries in 2011 to help keep the headaches “at bay”. Are these migraines new? Have you had any headaches since your surgery?

    CLEAN MRI coming your way!

    • 11 months out. I got hormonal migraines previously, so no ‘new’ headaches post surgery. I may need to find something different than Imitrex to treat them, though.

      Fingers crossed!

      • Eww, I did Imitrex, urg. Can’t stand that stuff. Did it work for you in the first place? Sorry it’s not now. Has any of your doctors ever mentioned Gabapentin or Topamax? PS, I’m so glad you didn’t have “new” headaches post-surgery. I had them and they SUCKED!

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