October 25, 2005
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Yesterday my oldest had exploratory surgery on her bladder. Last month it was the same thing with her ovaries. This has been going on since March and watching her go through much of the same stuff I’ve done has been difficult. Even though she acts like she’s the toughest one of the three I feel the most protective with her.
The fact that she’s 24, and they have this little thing called HIPPA, makes communication with the doctors almost impossible. Pretty much the only time I get a straight answer or any information, for that matter, is when the doctor meets me in the waiting room after the surgery. After that it’s whatever my daughter tells me. And, because she goes back and forth between the urologist and the gynecologist and their assorted nurses and she’s on pain meds, the feedback is confusing and, at times, conflicting.
When you have breast cancer you are the driving force of “the team.” You choose your treatment, and your feedback is taken seriously. I forgot how at the mercy of the system you are with the rest of the medical community. And that is why, with the exception of my oncologist and surgeons, I stick with Eastern medicine.
My daughter was hoping he would find something yesterday but he didn’t. When I told her the news she wept. I suspect it’s the scar tissue growing back on the outside of the bladder but I didn’t say anything because there’s nothing she can do about that. The gynecologist cut all of it off but it can grow back.
I would be curious to know if any of you have had a similar experience or know of someone who has. This child’s appendix ruptured when she was 11. They couldn’t figure out what was going on with her and she almost died. Because there was so much infection and it took so long to heal she developed lots of scar tissue. When he got in there he found her entire abdomen was covered. All her organs were encased with this scar tissue. They also found some endometriosis. The confusing part to me is that in our little meeting after her surgery he didn’t say one thing about finding or removing any of the endometriosis. He sent her home with lots of pain meds and hormones that will prevent her from ever having a period again. You can imagine my concern as I and my mother and my grandmother, my ex’s mother and his mother have all had breast cancer. Last week I saw a patient after her mastectomy who was just my daughter’s age.
Yesterday’s surgery was all the more frightening to wait through after writing about my “Worst Experience Ever.” Especially when I got a look at her anesthesiologist. I’m sorry if any of you out there is one or is married to one but why are they always so creepy looking? Yesterday’s guy just looked ghoulish and I came so close to saying, “If you give my daughter anything weird I will make your life a living hell.”
Mostly I’m supposed to be the driver and keep my mouth shut. I should be playing nurse but it’s Tuesday so I’m off to the hospital.
Comments (27)
how hard to watch your child suffer and not be able to kiss it and make it all better! just being there can make some things work better for her!
Scarey for sure. I am getting some radiation now and today the machine broke. We do put our lives in the hands of people don’t we. Hugs to you and your daughter.
Wow – read your “worst experience” after this one…no wonder you don’t trust some in the medical community. But – I had an amazing young woman as my anesthesiologist (sp?) and she was careful, precise and kind – when they had to piece my ankle back together…so good ones do exist. I’m so sorry about your daughter though…I had a similar experience in my early 20s with a cystic ovary that my doc didn’t know was cystic until two exploratory surgeries, two years and many meds after I started having severe pain…the medical community just doesn’t have all the answers…like we think they should. Sad. Hope she’s doing okay.
Glad they didn’t find anything but it must be infuriating to be held just outside the box of information that your daughter surely gets from the doctors. Although unless you ask specific questions they don’t offer up any information from my experiences with my two daughters. All in all you are in the proverable place called the rock and a hard spot.
It must be hard, as a parent, to watch your child hurt and not be able to make it better.
Wish I had something to say that would make it all better. /hugs
May I ask if there is a reason other than stopping her periods why your daughter is being given hormones at her age? Does it have something to do with the scar tissue? Because if it doesn’t, she could have had an ablation to end her periods without the side effects of hormones. Ablation wouldn’t interfere with anything else in her system, it would just keep her uterus from collecting that layer of tissue, etc., and shedding it. Obviously I’m not qualified to diagnose anything or even recommend alternatives to what her doctors are doing. I’m just curious.
I’m sorry you and she are going through all of this. I know it’s hard to watch your child suffer physically and emotionally and not be able to help, regardless of her age. You both have my prayers and good thoughts.
T
I wish I could help, but I have no information on this that would be useful. Watching our children suffer is worse than anything we endure ourselves. I wish you all peace and healing.
Poor Miranda!!! Yes, anesthesiologists always look creepy, at least in my experience. You should’ve seen this guy at my colonoscopy/endscopy. Freeeeak. So anyway, I hope all this is better soon
this HIPPA is a real problem…I make sure my husband includes me in any information the doctor gives.
And it is your child after all!!!!
I went into shock when I read this, having no idea that your daughter had been and is going through so much, and having no idea of how difficult it must be for you ~ there is almost nothing worse than our children being ill, in pain. How tormenting. Her beautiful body. Your child. And yet so much care and love between you. She knows you’re there for her; ultimately that counts for a huge lot. She’s not alone. She had her Mom. Though I’d be with you in threatening anyone in the medical profession who might mess up. And lots of support to your daughter, you, her sisters, your other daughters. And love. Endless amounts of that. xo
has her Mom… my daughter was talking while I was writing… xo
So sad that she’s gone thru so much. Yes, she wept. First is relief and then the question “What?” Hopefully the release of adhesions will help her. It sometimes does.
I am saying a prayer for her…. you have been through so much…
You’re amazing. I’ll pray for both of you. I just read this post in conjunction with your last one about your worst experience ever. You’re a wonderful, strong woman. Sometimes you talk about the energy I have, but it’s easy to have that energy since nothing bad has happened to me. You enrich my life, Prudy!
This makes me glad we’ve–so far, knock on wood–not had to deal with much. We’ve just been battling swimmer’s ear for the first time in both girls and that’s the worst physical thing we’ve had in years. Wishing your daughter good health.
Oh, gosh, I hope she gets better. I had an ovarian cyst that they did surgery on and it just kept comin back and back and back. The pain was awful. Eventually—at my age–it went away.
I was going to suggest endometriosis but I guess that’s a big no. Wish they could figure out what it is.
RYC: Trudy, I will e-mail you with the bad agent’s name. The only clearinghouse I know of for bad agents is called Preditors and editors and you need to Google it, because I don’t know the URL. But they only list people who take reading fees and do horrendous things.
Lots of sharks out there. I can guide you to the good lists if you need help.
Lynn
There ya go. Not a lot of detail, but it’ll do for now. When I get home tonight, I can play with my website.
I had a coworker who had surgery to solve her endometriosis problems, and I recall that she said it hadn’t helped. These things are so frustrating, and I understand your lack of trust in Western medicine. It has its place, but I do appreciate a more holistic approach. I wonder if I’ll have to remind my new doctor at the HMO that I’m a person, not a lab value. I hope things improve for your daughter.
RYC: http://www.fitday.com/ I think you can just register and track online, or you can buy the software, which is fairly cheap. I bought the software. The database is fairly extensive, and you can add custom items for things you consume regularly that aren’t in the database.
I actually signed up with nanwrimo, but now it looks as if I may be very busy on something else. I’m going to take this as it goes.
Lynn
I dont know anything about that, I am sorry foryour daughters pain, and mental apin she and you both have to endure.
I hope she gets a straight answer and it can be repaired easily.
Peace and Love:)
I never thought aout it much, but they do, antheseologists , look a little creepy!
Doctors are so…hard. So many of them want to just throw meds at you or cut you open with no regard to the whole being. I have a friend whose father was an anesthesiologist, and he was the most gentle, caring man I have ever met. He wound up leaving the practice, going back to school, and becoming a veterinarian, as did my friend himself.
The way the medical system works now, I think it beats the humanity out of doctors. They’re taught to deal with lawsuits and insurance companies, and no time or focus is left on “healing.”
I hope your daughter is okay–my prayers are with anyone going through pain and suffering with no good answers!
Happy Weekend, Prudy.
Peace and Love:)
http://www.itmonline.org/arts/adhesions.htm Combines Eastern and Western ideas on treatment of internal scar tissue.
i’ve a friend, a physcian’s assistasnt who has cut his hours back to no more than 5 a day, lest he find himself treating patients with less care then he wants to give. hard, this doctor issue – they are hardened by their training, do have to know an awfully awfully lot and have lifetime unending responsibilities to their patients that are not necessarily easy to carry for a lifetime. the current tgraining paradigm doesn’t help…
does bastier in seattle offer herbalism? if it does, it has a nationally recognized name and reputation…
great sympathy with your daughter – sorry she’s going through this and here’s hoping a solution appears with some rapidity….
poor girl. i remember when i had my gall bladder attack how much pain i was in, so i can sympathize with her pain… damn… all i can think of is how lucky she is to have such a good and caring mother.
i know i’ve been scarce, but if you’ve read a little you may understand why.
i’ve heard of the nanowrimo thing (i think that’s what you said it was) but i haven’t taken up the challenge to explore anything about it. it’s been pretty busy for me here…
but now, my mother is my sister’s responsibility and there will be some peace, i think… (i hope i hope i hope)
take care Pru!!!
Rose