Monday, December 12, 2011

Dealing with adversity, or fighting it? (or: am I a sissy?)

"Is this it"? I keep asking myself.
What I mean is, is this regimen of medicines and pain control IT?
I have what, 40 or 50 more years to live of this life, right?
Am I *really* going to be on heavy medications and narcotics, with ever increasing dosages, for all that time? I just can't picture it. I'd love to talk with someone who has spent 40 years on Fentanyl.

But that person would be impossible to come by. Why? Because this medicine, first of all, is pretty new. It hasn't been around for 40 years. The patch form that I use, and which is mostly commonly used for cancer patients (שלא נדע), was developed in the mid 1990's.
This is from Wikipedia:
Fentanyl was first synthesized by Paul Janssen under the label of his relatively newly formed Janssen Pharmaceutica in 1959. In the 1960s, fentanyl was introduced as an intravenous anesthetic under the trade name of Sublimaze. In the mid-1990s, Janssen Pharmaceutica developed and introduced into clinical trials the Duragesic patch...
So I'd be hard-pressed to find someone with 40 years experience with this drug in any form.

Why am I getting into this? Why would I question a good thing? After all, I am out of pain (mostly).

Well, like I've talked about in so much of my blog writing, everything has it's cost. It's one of the reasons I believe in natural childbirth; the medicines can make things much worse in the long run... and in the short run. There are so many complications that can happen once we introduce medicines into a birth. Nothing comes without a price.

Well, I am paying the price. And I am examining again whether or not the benefit is worth it. I mean, yes, I was in a LOT of pain, and having that taken away is a HUGE THING. It's not like in childbirth that I know that the pain is very temporary, and that I know a Big Reward is waiting for me very soon. This is not temporary, and there is no big reward.
Or is there?

The prices I am paying now are:
Sleeping a tremendous amount. I can easily sleep 12 or 14 hours at a time. I sleep away opportunities, I sleep away my children's precious waking hours.

The second price is that my intestines are on vacation. They aren't doing their job. There is a serious traffic jam, and they aren't doing anything to clear the path, if ya know what I mean.
It isn't a joke, really-- we all need *every part* of our bodies working. If one part goes on strike, we got trouble.

About the sleeping issue, Dr Z gave me ~another medicine~. It's basically an "upper", and I can take it any time I need to get out of bed and get moving. I filled the prescription, but I haven't used it yet. Another drug. I haven't been able to take that step. I don't know if I will. I probably will.

About the traffic jam, well, I am doing everything in my power. Slowly things get moving. Very slowly. Very uncomfortably.

I also have my kidney disease to worry about, and eventually also the liver would protest all these medicines.

As far as Dr Z is concerned, I am being treated as a cancer patient. I get my medicines for free. He gives me the same advice he gives his hospice and cancer patients. Lyrica, Fentanyl patches, Ritalin (the "upper" I just mentioned) for being awake and fighting the fatigue that comes along with them. I am actually an oncology patient, being treated by one of the country's top oncologists-- orthopedic, Prof Meller. I have a tumor disease in my thigh which is not cancerous, thank Gd, but it is oncological.

I don't *want* to be treated like a hospice patient. I have lots of living to do. These drugs take away my pain, but drag me down. Without them, however, the pain itself was dragging me down.
I want to be one of these miracle stories where the person, against all odds, trained her body out of hurting. Here is one story which I just read. Makes me feel like a sissy.

I *am that strong*. I think that I can do that.
But my dilemma is... maybe I'm not actually that strong.
Maybe by being who I am, not actively working, being home with my kids, taking pain meds, *IS* what Hashem wants for me. I always said that one of the amazing things to come out of these years of illness is that I am not spending my time working. I am raising my children, the holiest job of all-- even [slightly] holier than helping babies be born. If I were to go off pain meds, I wouldn't be available for them because of the myriad of issues that comes from going off meds, and being off meds.

It could be that it's time to raise my children with the value of being strong, being healthy, fighting adversity. I mean getting off pain meds and working on being healthy and strong despite the pain is an amazing thing to show my children.
Prof Meller suggested I go off them all so we can test my leg to see *if* all the pain is all coming from that joint. (there is lots of damage all around the joint, and scar tissue from the NF all in the same neighborhood. He thinks that is more to blame for the pain than the PVNS is. I, on the other hand, know what I am feeling.) If the joint is the source of the pain, then he'd consider some sort of partial replacement surgery to try to help. That would hurt lots, and can't bring promises with it. I don't really see much gain there.

No, I am not going off the meds. I am not crazy.
I just wish I could.
I wish there was something I could look forward to-- some procedure or treatment-- that would change my medical situation and fix things.

I just did an MRI. No results yet... soon we will see if there is anything visible that all this medicine is covering up.

Thank you for being my sounding board. I needed to think this through.


  1. Where does the plastic surgery that you haven't done fit into all this?

  2. Sarah, oh so complicated. I think it's important to sometimes say that to yourself--that is, to just to say the obvious--what is obvious we sometimes don't always say--but here to acknowledge how **not** straight forward anything has been and continues to be around your health and being pain free or mostly pain free without so many complications.

    I do wonder (and I'm just thinking aloud here) about the suggestion to try to find the source of the pain, and taking you off of all medications to do that. It sounds horrible, and it'd have to be done with you in the hospital or with care providers with you and supporting you I'm thinking. But I wonder if that might provide some kind of information that could be helpful in terms, as you say, for finding the source.

    But on the other hand, that sounds so so so scary and terrible and frightening and I completely understand how that would not be the direction you want to go in.

    I do hope the MRI provides some more information and I send you the biggest hug in the entire world and lots and lots of love from Modiin all the way down to Beer Sheva.

    Love, Ariella

  3. Sandra: I don't see much point in going through with the reconstruction surgery. I really believe that most of my pain is from my thigh joint, so the reconstruction wouldn't solve the large part of the pain. It may solve the nerve pain, and the pain from the mesh surgery. But, at the moment, that isn't on the table. I don't know, I think I just need to clean off the table and have it available for whatever I need on a day-to-day basis. No huge decisions today, you know?

    Ariella: Thanks for thinking out loud back to me. :-) Going on and off these heavy meds wreaks havok in the body and mind. I do, however, see merit in doing the pain isolation testing. So I am undecided.
    I think I'll just wait and see what the MRI shows, if anything. Then there is the consult with the other orthopedic surgeon from my team two years ago. Then we'll take it wherever it naturally goes. Sound good?
    And I LOVE that you sent me the biggest hug in the entire world. I'm quite sure I got it.
    Love you!

  4. For everyone: I hereby revoke the word "Sissy" from this publication. It will remain in view, but it is emotionally revoked. Thank you for your participation in this first-time-ever event. Revoking self-inflicting insults may have just become a precedent. I thank you all for your participation in this life-affirming decision.

    Writer and blog publisher, Sarah. :)

  5. Sarah, first of all, you are not a sissy. Seriously. You are approaching these incredibly stressful challenges holistically, through your faith, through science, and through an intuitive and emotional understanding of your body and your needs and the needs of your family. You are giving lots of thought to your options and are not making decisions based on fear or cowardice. So please don't give the "sissy" thing any more thought.
    OTOH, I have a glimmer of understanding of where you're coming from. When your body isn't up to what it used to be up to, it's easy to feel that if your mind were stronger, you could get your body back under control. I actually believe however, that the physical stuff is sent to us so we can learn that we aren't the one in control after all. :-)

    To me, the thing you're struggling with is what the "new normal" is going to look like and a bit of grief over what you've lost. It's awful that it looks like you're trading off pain for lethargy and sleep, but that might be the only choice available for now. Once you've got that sorted and are at peace with your choice, you might find other options, but in the meantime, it doesn't sound like there is much else you can do.

    Mary Margaret, New Zealand

  6. I really feel for you, Sarah, and I so admire your courage and your wisdom and your faith. You are a real inspiration to me.

    Mary Margaret, New Zealand

  7. MM- you are also awesome. I resonate with everything you wrote, and soooo appreciate the time you took to write them all down. I have a hard time thinking I am an inspiration, especially to you. You bounced back emotionally as well as physically after you were brought down. I am wildly impressed with your story of fighting for your treatments in a timely way, and all you had to go through to protect your life.
    Well, thank you. I think we should form a "mutual admiration society". :-)

  8. Oh, and what you said here "I actually believe however, that the physical stuff is sent to us so we can learn that we aren't the one in control after all. :-)" ...yes, yes, yes. So completely with you on that. I meant to write that idea in the blog, but I got sidetracked by other thoughts. Thanks for writing it for me. ♥
    BTW- did you read the Jerusalem post article I cited?

  9. I so empathize with your dilemma. My sense, though, is that one cannot speculate too far into the future with regard to medical therapies - things simply change (usually for the better) too quickly. One drug that is effective in reducing your pain doesn't mean there isn't an even better one, without the side effects.
    Ze'ev Silverman

  10. After reading your last post, I just want to tell you that there are stages in life, and many gradations between NOW and 40 YEARS. In a few years, you may feel like you're in a better position to make changes, or whatever will be right for then.

    My point is that the stage that you and the kids are in now will only last for a few more years. Focus on what you need in this stage, and remember that the next stage will have different contours and that you can adjust things then that you can't see adjusting now.

    Of course, you have to figure out how that applies... maybe you deal with more pain now, so you can be present (quantity). Or you deal with blocking the pain now so that you have quality. But just know that now is only now, and that you don't have to solve the rest of your life in one shot.
    Dena, Efrat

  11. Oh, and the windsurfer?
    She has no family! [Not married, no kids]. Nothing but her surfing career. If I was living the good life in Hawaii, I'd be able to get myself into [amazing] shape too!

    So definitely use her for inspiration if it helps, but don't let her get to you in a negative way!
    Dena, Efrat Israel

  12. Thank you so much, Dena.
    I have rescinded the idea of figuring out the next 40 years in one shot.
    I'm with you 100%. Changes come when it is the right time for changes to come. I am personally not ready to *make* changes now, so I plan not to.
    hugs to you!!
    PS-you are so totally right on about that fact with the surfer. I mean, she did do an AMAZING job. But I am in such a completely and totally different space from her. I am 43 and raising four kids. She is what-- 20? 22? No kids. How did you even let me compare?! ;)

  13. Sarah, medical science is moving so fast, there might eventually be a pain medication that controls your pain without putting you to sleep. As you mentioned, the medication you're on now was developed relatively recently. Or a new method of delivery, directly to the source of the pain. In the meantime, you're doing amazingly well with your reality.

  14. Dear Sarah,
    I really admire your way of coping with this seemingly inpossible situation.
    If you were a stranger and I were "just" a naturopath, I might say: the hell with all those meds, there must be other ways of dealing with the pain without the terrible side affects, the doc was right for suggesting to get off them to see what the cause is, because the drugs only cover the pain up without really solving the cause (but if that's what you decide to do - I think it must be done VERY gradually), and in any case get some treatment (herbology being my 1st choice) to clean your liver and kidneys so they can cope with all those chemicals.
    Etc. etc.
    That's my head speaking.

    But you are not a stranger nor a patient of mine, but rather a friend - one of the oldest friends I have - so my real reaction comes from the heart, and says: Do what you feel is best for you and do it whole-heartedly. As long as you feel better.
    BTW I believe G-d helps those who help themselves...

    All the best
    Shanni RP