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And it keeps getting better and better

November 9, 2010

Here’s what’s going on in list form because that’s all I’m capable of right now.

  • Last week I went in to see the neurosurgeon thinking we were going to talk about cyberknife for my back, which is absolutely the most painful thing I have ever felt.
  • As it turns out he wanted to talk about my brain, specifically the one lesion that looks like it’s growing.
  • The radiation oncologist had just wanted to watch that thing for a few weeks and do another scan.
  • The neurosurgeon wants to drill a hole in my head this Thursday and take a piece out to look at it. He wants to see why the radiation didn’t work on that spot.
  • What if it didn’t work? It could mean they’ll physically take it out (with possible brain deficits), do a different kind of radation, or whatever. I could be untreatable and it could kill me.
  • This is not what I was exepcting that day or I’d have taken someone with me.
  • I went home and talked with Hank. That was last Wednesday. We both felt that God was telling us just to not say anything to anyone at that time.
  • I am having no brain symptoms. The neurosurgeon did all the tests…. stand with your eyes closed, touch my nose then touch your nose, all that stuff.
  • The only symptom I’m having now is incredible pain and increasing numbness down my left leg. I can barely walk on that side. I can’t take pain medicine because I’m allergic to it. When I talked with the neurosurgeon I had been on steroids for two weeks and hadn’t slept for more than two hours at a time. I begged for Ambien and got it, though for some reason he’s worried about my getting additicted it. I didn’t jump down his throat, rip his heart out and throw it against the wall, but I thought about it. Never never never never give a woman steroids and then play with her mind.
  • On Thursday the neurosurgeon called the gamma knife people who did the brain surgery on August 2. Apparently there’s a very rare thing called “radiation effect” or something like that where a lesion that has been treated can appear to be growing (and this one looks like it also has a second one attached to it), but it actually is not. The gamma knife people recommend another scan next week. On Friday the neurosurgeon said he’d go up the gamma place and look in to a similar case and get back with me.
  • The neurosurgeon forgot to tell me that he went out of town and won’t be back until tomorrow.
  • SCREAAAAAAAAMMMMMMMMM!!!!!!!!!
  • So I made and appointment with the radiation oncologist today and told him all this (This is Dr. Hope #2). He has a call in to the neurosurgeon’s office and will get back to me tomorrow. He thinks we should just do a scan since I’m not having symptoms, and he thinks we shouldn’t do it until December rather than next week. However, he agrees that we need to talk with the neurosurgeon to see exactly why he is so anxious to do this now — just in case.
  • Meanwhile, the cyberknife people are doing their busywork and it looks like they want to start treating my back on Monday the 15th. This is the only cyberknife in the Seattle area and you just have to queue up with everyone else. They are, however, putting me on a fast track. They are very nice.
  • I can’t lie on my back for more than two seconds without excruciating pain. How am I supposed to lie on my back for two days after getting a hole drilled in my head? Stupid stupid stupid stupid doctor. STUPID! But still, I don’t want to be medically stupid myself.
  • If I have brain surgery on Thursday I might not be physcially well enough to have cyberknife on my back starting Monday. I can feel the nerves being damaged in my back progressively. So, my choices are skipping something that might be medically necessary for my brain or skipping something that might be medically necessary for my back.
  • SCREAAAAAAMMMMMMMMMMM!!!!!!!!!!
  • Sorry. Roid rage.
  • I talked with the naturopath today who is requesting the neurosurgeon’s notes and will call me tomorrow if she can get them and parse something out of them that might be useful.
  • Meanwhile, I just need prayer for wisdom in figuring out what to do first, next, or whatever.
  • I’m inclined to ask the neurosurgeon why, other than he happens to be available on Thursday, we need to do this NOW???? Stupid stupid stupid doctor. (He’s extremely competent and I actually like him when I don’t feel like kicking him in the shins.)
  • I might end up in rehab to get function of my left leg back all the way. The real puzzle here is that the brain thing is in a place that can cause left-side motor problems, but I’m getting nerve “zinging” down my back when I move in certain ways and it goes from that part of my spine and then downward, so it seems like a spine/nerve problem to me rather than a brain problem at the moment.
  • Nobody say anything like “It’s going to be okay,” “I’m sure you’ll get through this just fine,” or anything like that. We’re getting down to little things that can kill me at a moment’s notice — stroke, whatever. I’m in a pretty darn bad place and don’t relish anything that trivializes the current crisis.
  • And I know you’re all a lot more thoughtful than that. Steroids make me crazy. Did you notice?
  • What we really need is just a huge bath of wisdom and prayer about next steps. It’s time to share this now because tomorrow is Wednesday and I’m scheduled to get my head drilled on Thursday. I need to hear from doctors and I need to hear from them early and I have absolutely no patience left.

Image: Francesco Marino / FreeDigitalPhotos.net

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39 Comments leave one →
  1. E Lis permalink
    November 9, 2010 5:27 pm

    Wisdom and prayers for it as well as everything that is coming your way. I don’t know how anyone could trivialize what you are going through, but know I’ve heard my range of stupid comments through the years. Whatever I say is trivial, but it is a means to let you know I am right there with you, care, am praying and really, truly care.

    With love, warmth… Lisa

    • November 9, 2010 6:28 pm

      Lisa, You never trivialize. Never.

      • E Lis permalink
        November 9, 2010 7:23 pm

        See hit me again! 😉 Can I ask what do you need? I want to help and know there is so little that does. I have positive hopes and prayers, but know cancer is a huge thing.

        • November 10, 2010 6:42 am

          You know, just knowing you’re all out here all the time is the best help.

  2. Kerri Lunsford permalink
    November 9, 2010 5:40 pm

    (((((Praying))))))

  3. mom permalink
    November 9, 2010 5:59 pm

    What do I say my dear, I love and pray for you nightly and during the day too. The doctors usually do ignore the heartfelt persons agony. Why???God will answer them too. i did survive a major blow to my brain and came b ack. You know. God will answer the prayers being said for you. Talk to Debbie, and she will tell you the truths from the Bible. And ask a out Tramadol too. It helped Dad and Aunt JoAnn a lot. Ask for prayers from Pastor Jack too. He is a wonderful man.
    More Love and prayers, Mom

  4. Murray permalink
    November 9, 2010 6:10 pm

    We pray for you every night and will continue to do so – Maria & family

  5. November 9, 2010 6:28 pm

    I’m feeling the prayers…

  6. mom permalink
    November 9, 2010 6:28 pm

    Aunt Jo Ann says God is with you. God is using you to send a message to someone! And isn’t it amazing how God works through you to help other people? All 5,000 + of them. It’s not easy to ignore God’s message. God loves you. She prays for you every night too. And loves you too.From Aunt JoAnn

  7. Babs permalink
    November 9, 2010 6:50 pm

    I want to say something funny and witty….anything to make you laugh/giggle.

    Let’s see -any man who doesn’t step away from a woman taking steroids is an idiot or sucker for punishment!!!!!!

    xoxoxoxoxo
    Babs

  8. November 9, 2010 6:53 pm

    I can’t say anything without swearing so how about if I just scream right along with you? AAAAAAAAAARRRRRRRRRRRGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

  9. Cristina permalink
    November 9, 2010 6:57 pm

    Hmm….after having had shingles on a back nerve that radiated out from my spinal column area along a rib all the way to the sternum, I vote for cyberknife treatment first. That is, if my vote counts for anything, since it is your body after all. You have the ultimate vote in saying what the doctors may or may not do to your body.

    From the sound of it, it seems like your back pain is worse than shingles. Which makes me wonder how in the world you were able to present such a professional facade at work…
    Before my doctor prescribed Vicodin, the only pain relief I had was from sitting in my car and pushing on the steering wheel slightly. Somehow, the seat put pressure on the right spot or helped support my back in such a way that it helped mute the pain and spasms. It took a while for that nerve to heal and calm down– about a year or a year-and-a-half before the last spasm happened.

    I wonder if the neurosurgeon is eager to do it on Thursday because he happens to have a spot in his schedule that early. It is Veterans day after all and maybe there is less demand during that day.
    ((((((hugs))))))

  10. Sarahtee permalink
    November 9, 2010 7:07 pm

    Praying for wisdom, Jill, and that your medico team will all liaise with each other promptly, and get back to you even more promptly.

    Sarah xxx

  11. heidi permalink
    November 9, 2010 7:19 pm

    Praying all the time for you. I pray for some decent rest and hope the Ambien is helping.
    Love, Heidi

  12. Thomas Campbell permalink
    November 9, 2010 7:22 pm

    Crying out to God for you Jill. Crying out to God.

  13. Mina permalink
    November 9, 2010 7:26 pm

    Praying for wisdom as you navigate the days ahead. Much love to you.

    p.s. I think the disclaimer to addiction to Ambien is normal from the doctors. James took it for a bit a few years ago and got the same type of lecture.

  14. Sami permalink
    November 9, 2010 7:36 pm

    Jill, we pray for you everyday and pray that God guides the doctors on the right path and surrounds you with the best doctors. May you some good restorative sleep and the right path show itself soon. (((HUGS))) to you and your supportive family.

  15. Bemused Boomer permalink
    November 9, 2010 8:05 pm

    I see you surrounded by angels, shielding you with their wings from the human frailties of doctors. I am reminded that my daughter was born Cesarean after induced labor on December 28 because the doctor (who was a good doctor and I liked him) wanted it to be after Christmas and before his New Year’s golf trip. But that was a long time ago, and I was young and didn’t know to ask for angelic intercession. Love and prayers to you.

  16. Ellen permalink
    November 9, 2010 10:06 pm

    I agree with Bemused Boomer about being surrounded by angels. Try to focus on what they are telling you to do.

    Prayers for wisdom in figuring out what to do first, next, or whatever.

    Just remember what the Scarecrow said after the Wizard gave him a th.d, “The sum of the square roots of any two sides of an isosceles triangle is equal to the square root of the remaining side. Oh, joy, rapture! I’ve got a brain!

    Wouldn’t that be a good line to use on the doctors when you wake up from your brain surgery!

    Much love,
    Ellen

  17. Ellen permalink
    November 9, 2010 10:24 pm

    Jill, I’m sorry if my comment about the brain surgery sounded insensitive. I am worried and sad and angry and scared for you. Like everyone else, especially you, I just want it to be over and have you all better.

    • November 10, 2010 6:44 am

      Not insensitve. I might have that tattooed on my head before the surgery — when and if I get it.

  18. JakKim permalink
    November 9, 2010 11:13 pm

    Still with you Jill, praying and holding you close in heart and thought. Prayers for wisdom, clarity of decisions, less pain – well, ideally no pain, but I’m being practical 🙂 – and some sleep. xoxo Kim.

  19. November 10, 2010 4:37 am

    Jill, I love you. My heart and my prayers are with you, my friend.

  20. Gina Agne permalink
    November 10, 2010 4:59 am

    Praying for wisdom and prayer about next steps. I think about you and your family every day.

    Gina

  21. Debbie permalink*
    November 10, 2010 6:32 am

    My vote(s):
    1. NO brain surgery (based on a lot of praying)
    2. Yes to cyberknife to spine ASAP
    3. Yes to a good swift kick to someplace painful to any MD that makes a decision about patient treatment w/o bothering to check with the patient.

  22. Denise permalink
    November 10, 2010 6:49 am

    Jill, you continue to be in my thoughts and prayers.

  23. Wendy permalink
    November 10, 2010 6:54 am

    Jill, you are continually in my thoughts and prayers. Nerve pain has always seemed to be the absolute worst, but I imagine nerve pain in addition to everything else you’re feeling and going through is far, far worse. How you’re keeping it together must be a result of all the prayers, so we’ll keep them coming! We love and miss you.

  24. Penny permalink
    November 10, 2010 7:48 am

    Praying for you from your pocket. I wonder if a homeopath could give you something for pain? I read once on an autism list that after surgery, one family used a high-potency arnica prescribed by a homeopath for pain instead of meds.

    • November 10, 2010 9:36 am

      Hey! The naturopath just prescribed some Arnica cream yesterday, which is helping cut down the pain by at least 25%. This is a blessing. Of course, it means I smell like an Altoid, but whatever!

      • November 10, 2010 10:15 am

        My Arnica gel is odorless… But Altoids are refreshing! 🙂

      • Arzelie permalink
        November 10, 2010 10:52 am

        Our somewhat fruity chiropractor wanted us to give Maeve arnica tablets under her tongue right before and after surgery to have her tonsils removed. Unfortunately, I forgot them at home. Perhaps adding those in would help?

        Thinking of you lots.

  25. Barbara Austin permalink
    November 10, 2010 8:01 am

    Jill…I know Debbie from church…you are in all our prayers. I keep getting this message to give to you: Psalm 111:2 Great are the works of the Lord; they are pondered by all who delight in them. Trust the Lord and let him guide you in your upcoming decisions.
    With Much Love and Prayers
    Barbara

  26. Dawn permalink
    November 10, 2010 8:10 am

    Jill–My prayers are going up at this moment–for your doctors to figure out what is best for you, for you to stop having the horrific pain, and for your family who I know would do anything to take this from you. I hope the Ambien is working for you! Just so you know, I took it for a couple of years and had no problems. All this plus sleep deprivation is WAY too much!

  27. Tammy permalink
    November 10, 2010 11:34 am

    Praying hard (you’re always in my prayers), especially for God to clear a steroid-free and pain-free space around you and fill it with peace.

  28. Pat Hallberg permalink
    November 10, 2010 5:31 pm

    DIDDO DEBBIE’s remarks.

    CHEEZE…Who do you believe? Your gut must rule until it can’t any more then the BEST ADVOCATE you have needs to be at your side constantly.

    WE are just back from Panama and still getting caught up. You have been very busy taking care of yourself and driving through the changing scenes in your body. I just had steroids shot into L 3,4,5 by a pain MD yesterday epidural needle guided by a camera. Hit the spots and I am getting around today without any pain. IF I could, I would live on steroids, Prednisone etc. but I am 72 years old and taking steroids makes me feel like a kid again. What happens to real people when they take steroids? Dumb Blonde, Aunt Pat

    PS worked for Barry Bonds.

    Love ya more, keeping the positive thoughts flowing in your direction where I know they will be caught and used.

    Aunt Pat & Uncle Ross

  29. Resa permalink
    November 11, 2010 3:59 pm

    Checking in.

  30. Dawn Humphrey permalink
    November 11, 2010 9:50 pm

    All during the rehearsals for the Quilters, Debbie kept us updated and sometimes shared your upbeat blogs, and I praise our Lord for the prayers on your behalf. In our devotions each morning we have a list that we pray through and are praying that everything you have had to endure will be a positive witness to those who attend you, of God’s hand at work in giving you grace and wisdom and a sound mind even through the pain. Keep on keeping on Sister, until He decides “it is finished” and you will be healed either here or on the other side awaiting your loved ones to join you! AMEN

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