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Knifing completed

November 17, 2010

Sorry to have gone dark on you the last couple of days. I’ve been just plain ignoring a lot of things trying to stay focused on not being too completely psycho.  Three weeks of steroids and wow…. just WOW. I know they keep the inflammation down, but a grocery store clerk got much much more than the evil eye from me yesterday. She actually deserved it as few other grocery store clerks I’ve ever run into (making a woman who is obviously in pain and limping haul all kinds of things from one blasted counter to another…. then forgetting to put a grocery bag in my cart so I had to gimp my way back to the store for it hours later… grrrr) but that’s a different story, which I just told I guess. Anyway, I didn’t want any of than funk to get on you or in my blog.

I got some relief right away with the first cyberknife treatment. A numb square on the bottom of my left foot started to shrink. You have to understand that I got to the point this weekend where I could barely climb stairs and was having to lift my legs one by one into the car  using my hands to put them there. This was not just pain, it was nerve damage. I am still very weak and nerve damage takes a while to go away, so I might need some physical therapy to get over this.

However, both the pain and the numbness and weakness are declining bit by bit, day by day. It is going to take me quite a while to get my strength back, but I have been released to lift more than 10 pounds at a time and I went home immediately after the treatment today, turned on my yoga DVD and did some stretching. It felt so GOOD.

Dr. Stupid was supposed to be there after my final treatment to talk with me about next steps. Of course “something came up” (probably found someone who agreed to get a hole drilled in her head) so I saw one of the other doctors who hangs around the cyberknife. I liked her quite a bit and we’ve come up with a plan to reduce the steroids bit by bit. You can’t go cold turkey off them or you can shut down your adrenal glands (I think that’s what she said…), but we can do a slow reduction over a couple of weeks. I’ll need to stay on just a tiny dose because of whatever thingy is hanging around in my brain, but it won’t be on the PSYCHO dose level. Thank God.

Meanwhile, I am fairly tired. It’s a pretty big dose of radiation you’re getting after all. The doctor warned me that one day about a month from now I will all of a sudden say “Why am I so tired?” Then I will crash for a day or two — again, some sort of radiation thing. I’m also still in a bit of pain, but manageable with Tylenol. The weakness bothers me quite a bit and I’m just going to have to try not to injure myself by diving too quickly into some sort of strength-building routine. Being slow and patient isn’t my strong suit when I’m trying to get function back. But I will try to be good.

Next steps are follow-up scans in early December. This will be of my brain, spine, lungs, everything. Then we’ll make decisions about what to do about my brain, what kind of chemo I’ll do (likely something “lite” that will take me out of things for one or two days a week, but not be something that I will find torturous).

On Monday I discussed Dr. Stupid’s bedside manner with my medical oncologist. The medical oncologist is responsible for helping me keep all this stuff together and sort things out. We ended up laughing so hard we couldn’t talk any more. He said that he has yet to meet a neurosurgeon with any kind of social skills. He did reassure me that if we end up drilling into my brain it is a very forgiving surgery, but he said he agreed that I made 100% the right decision not to drill my head before we scan it again and especially not to have it put me at risk of delaying the cyberknife for my back as the nerve damage was getting to a highly dangerous level.  He also said the Dr. Stupid (socially stunted though he is) is an excellent surgeon. He’ll try to broach the subject of bedside manner with him, but he’s not sure how much good it will do.

So that’s all the news that’s fit to print at this point. Thank you all for checking in and for all your prayer and support.

Now I all have to do is get rid of my FAT STEROID FACE. And if you see me and say anything about my fat steroid face remember that I will still be on steroids for a while and I will be very very tempted to poke you in  the eye. If you  have to take steroids you will also get fat steroid face in a matter of days — completely chimpmunked in the cheeks and with a couple of extra chins just for fun. I swear whoever designs these drugs sits in a corner and giggles as he puts in all kinds of evil ingredients.

Oh…..

I guess that’s not all the news….

I NOW HAVE RED HAIR!!!!!

I’ve been of the mind that one should age gracefully and just embrace the grey. But you know what, I’m not GOING TO GET ALL THAT OLD if my prognosis is correct. I don’t have to worry about grey hair or hip replacements or any of that kind of stuff.  I guess that’s kind of freeing.

So you can call me RED. I love it.

Daniel thinks it’s weird.

Hank is going to buy me a green hat.

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27 Comments leave one →
  1. November 17, 2010 3:45 pm

    I don’t know how you are able to make me laugh, even when reading about really awful stuff! *huuug* Well, maybe *gentle tentative air hug so I don’t hurt you*

    And, while I don’t know whether the neurologists I’ve met have been neurosurgeons also, two of the three had horrible, horrible bedside manner. Really atrocious. At least if you have to have brain drilling surgery, the guy is good, right?

  2. Barbara Austin permalink
    November 17, 2010 3:51 pm

    Wow! Shaking head…mind blowing…it’s amazing how you have gotten through all of this.
    Blessings

  3. November 17, 2010 4:06 pm

    So glad the praying for less pain worked! (Or is starting to work.) Back pain is awful. Bill had to lower me onto, and lift me off the toilet any time I needed to go after I hurt my back in 1995. This went on for many weeks. For a long time, I would lay on the floor in the kitchen and direct the boys where to put the clean dishes (they were 8 and 11 years old at the time.) I hope you will get much better RIGHT AWAY!
    xoxo

    • November 17, 2010 4:25 pm

      Back pain is the worst, and doctors just seem stumped by pain management. Why???? I guess they flunk that class along with the bedside manner class, eh?

      • November 17, 2010 6:06 pm

        No lie that. I learned that the best thing to do for pain management is to keep the pain meds in my system at exact intervals so that the pain never overcomes the meds. I never disparage anyone’s back pain. Not since my injury, anyway (before that, I didn’t know any better). I didn’t “throw my back out”, but I did rip practically every muscle and tendon. The labor-pain-like spasms were just about too much to take. Again, I’m SO glad you have some relief!
        xoxo

  4. E Lis permalink
    November 17, 2010 4:12 pm

    The hair change is pretty common, but why would a doctor tell someone that kind of thing?! Sarcasm noted. I bet you look wonderful in red hair!

    I would never mess with someone on steroids never. I also am not sure what I think of the gradual decrease, but know you will ask the right questions. My Dad had to be pulled off ASAP due to his issues with them. I have studied it a bit and would have to guess gradual reduction is overall easier on the body and those you love.

    Thank you for the update. I don’t think you ever could offend anyone here or bring negative energy as you are such a positive force to begin with. Much love… always prayers…

    I am also sorry as I see the holidays approach you are going through this… I hope you will be able to rest as needed and desired and just embrace the moments as they come.

    – Lisa

    • November 18, 2010 2:49 am

      I think this might be giving me a little break over the holidays. We’re just going to be off any kind of treatment including losing the steriods and then make decisions about what to do after the first of the year. I’m not going to pop into anything during Christmas. I think I’ll still be getting over the radiation fatigue.

  5. mom permalink
    November 17, 2010 4:19 pm

    me two Kim. You’ve been there done that and understand. I do not plan to be there. Love you immensly and hope to hug you in person next week. Mom XOXOXO

  6. mom permalink
    November 17, 2010 4:26 pm

    Got some holes in my head too,my Jill, where they put shunts in. They healed well but left those darn holes, like bowling ball holes. dad and I used to laugh that if I were dug up in 2000 years they would wonder what kind of game my head was played with. Funny. mom

  7. Murray permalink
    November 17, 2010 4:26 pm

    Hi Jill,

    Yay! I’m so glad you got some relief!

    Here’s wishing you feel well enough to eat lots of turkey – or whatever you like. And red is perfect for Christmas – I think Hank has the right idea. So good to have you back. – Maria

  8. mom permalink
    November 17, 2010 4:27 pm

    And I love your red hair. Mom

  9. Arzelie permalink
    November 17, 2010 5:15 pm

    What kind of red? Friend just died her hair “neon red”. Just for the heck of it.

    When Maeve had her surgery, Rachel went to tell the receptionist that I did NOT want to see Dr. X anymore because of his bedside manner. Receptionist said she heard that a lot, but that Dr. X really was the best surgeon they had. So maybe bad bedside manner = amazing surgery skills? I’m going with that one…

    Glad the knife appears to be successful so far!

    • November 18, 2010 2:47 am

      Kind of darkish was intended but it turned out a little too orange to start — too much grey as a base. I’ll get it darkened next time. Looks good now, though.

  10. heidi permalink
    November 17, 2010 5:18 pm

    I am sooo glad to hear you’re having some relief. Hope each day continues to get better!
    Heidi

  11. Sarahtee permalink
    November 17, 2010 7:25 pm

    Really good to know the zapping has given you some pain relief. Thanks for the update, Jill : )

  12. Resa permalink
    November 17, 2010 9:36 pm

    Sooooo….if you have red hair and Hank is getting you a green hat, can I send you some pointy ears?

    • November 18, 2010 2:46 am

      Yes please! I simply must get ready for the holidays…

    • November 20, 2010 8:10 am

      The terrible truth is that I was born with slightly pointed ears already. My mother can verify this. It’s called a Stahl’s Ear Deformity.

      • Resa permalink
        November 27, 2010 1:56 pm

        Oh great, say something funny and then have it be true. Well, I didn’t notice your pointy ears in any pictures I’ve seen of you, so they must not be pointy enough.

        However, I’m on it.

  13. Thalia permalink
    November 18, 2010 3:10 pm

    Glad to hear you have pain relief from the procedure. Today is my ‘research’ day and I came across this article. Thought you might be interested, but please let me know if you would prefer not to receive information like this. I want to be respectful of your emotional well-being.
    Kind regards, Thalia
    http://www.physorg.com/news/2010-11-scientists-potential-triple-negative-breast.html

    • November 18, 2010 4:35 pm

      Thanks, Thalia. I can’t possibly do all this kind of research on my own, so this is much appreciated. I have printed it out to run by both my oncologist and naturopath.

  14. November 18, 2010 7:12 pm

    Personally I would have gone for green hair and a red hat! LOL

  15. Ellen permalink
    November 19, 2010 1:25 pm

    OMG Jill, this is the best laugh I’ve had in a while. Dr Stupid wasn’t available because he probably found some other sucker’s head to drill. bwahaha

    I agree with Cassie on going with the green hair. It would have done you until St. Pat’s day but then again, the red hair will come in handy on Valentines Day!

    I think you’d be beautiful with red hair, grey hair, or no hair.

    So, so, soooooooo glad you have some pain relief.

    I can’t believe that sales clerk!!! Not only is that terrible customer service but it is extremely bad manners. Maybe it was her head that Dr. Stupid drilled, then he forgot to inject some common sense in there. Sheesh.

    Have a good weekend everyone!

    Ellen

    • E Lis permalink
      November 19, 2010 5:38 pm

      I am thinking if La Nina continues as projected Jill also needs Rudolph the Red Nose reindeer. I volunteer my cat — she puts up with alot and is quite friendly with others. I’ll get the glowing nose on her….. I confess I even have the elf hat… Good thoughts!

  16. Lisa Welch permalink
    November 19, 2010 2:09 pm

    I”m so relieved that you’re getting some relief! Throw some dangly jingle bell earrings on with teh red hair and green hat, and forget about having to decorate anything else! I like Cassie’s green hair, red hat idea, though. Next time, maybe purple hair, pink hat…

  17. November 20, 2010 2:23 am

    More about the evils of decadron for your entertaiment. I’m getting swelling in the abdomen that’s making it hard for me to breathe now, and a choking band of fluid/fat that’s building around my neck — also making it hard to breathe, and not your normal double chin. I have the muscle weakness big time….. Can’t wait to get this stuff completely tapered out of my system. It’s amazing 10-15 pounds instantly POW and it takes months to get rid of it. Bizarre, evil drug.

    http://www.askapatient.com/viewrating.asp?drug=11664&name=DECADRON

    The pain relief is coming and going in my back and I have a request in for physical therapy. So, I’ve been pretty down about the decadron side effects making this recover slower, but I know I need to stay on for a while so the swelling around the radiation site continues to go down. Let’s hope that a reasonable tapering plan will continue to help on all counts and that by say Tuesday I’ll be able to put one coherent thought behind another and walk up a flight of stairs.

    And, yes, the cyberknife is working on the core of the issue, I can tell that. So, pain is less but still there. Fatigue and WEIRD STEROID PERSONALITY are there. Ugh.

  18. JakKim permalink
    November 23, 2010 7:32 pm

    so glad to hear the pain is better Jill. Rock your new do! xoxo

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