It's not fair

[Prudence]

So my brother has a tumor. He had this tumor before, and we were all terribly relieved that it was benign. A grapefruit-sized lump of benign right on his hip joint. So he had surgery, the took it out, and all was supposed to be better.

Except that this particular type of tumor, while benign, is persistently recurrent. It grows back. And the problem is that each time you take it out, to get it all you have to take some of the surrounding tissue. Muscle, in this case. And while the tumor re-grows with vigor, the muscle won't.

And it grows back quickly. I can't remember the exact timeline, but it wasn't that long ago that he had the first tumor removed.

So he went to have it looked at today, and they're concerned. Whether benign or malignant, it's extremely aggressive. Benign, in this case, isn't really that reassuring. The likely scenario is that to get it all they're going to have to remove the entire muscle group.

And my baby brother, who is only 28, is going to walk with a cane - at best - for the rest of his life. My brother, loves hiking in southwestern national parks - like Zion, Arches, etc... - even more than he loves Disney. My brother who works in forestry.

And fvck it all - it's my baby brother. *I* am the eldest. This should be happening to me. It's not fair. I don't love to hike. I would be perfectly happy never hiking again.

And this is all assuming it's benign this time, and we won't know that until they do another biopsy.

So whatever it is that you do when you hear things like this, could you please do it?

(x-posted to LJ)

[innerSpaceman]

Well, first I cry like a blubbering fool. I'm on that one.

The rest, I will do forthwith ... hopefully with better result. All my prayers, and hopes and faith and love.

[wendybeth]

((((((((Pru))))))))

I'll certainly be pulling for and praying for him as well, Prudence. I'm so sorry- even the better case scenario doesn't sound so hot, especially for such a young, active guy. Please keep us updated, okay?

[Not Afraid]

Not fair at all.

((((((((Pru and Bro))))))))))

[scaeagles]

Certainly heart breaking.

May I inquire as to where he is receiving treatment? Having access to the best in the field makes all the difference in the world.

[JWBear]

<<<HUGS>>>

[Prudence]

Thanks all. I should be busy feeling all supportive and I'm consumed with guilt. *I* was the wild child who made bad, dangerous choices and he's always been the good, upstanding citizen. Never caused worry, always did the right thing. Hell, forestry only barely squeaked out over ministry. It's not fair that this is happening to him. I'm the one that deserves it. And I can't protect him and I can't make him better and I can't take it away and it's not fair and I just want to scream at my God for letting this happen to him.

I won't know any details for awhile. He's leaving early tomorrow to spend a week with the in-laws in a cabin in Montana. He just got back from a mega hiking trip through Utah. We just saw the photos Sunday - all these places they hiked to, the warning signs indicated certain death, hearing about him leaning over cliffs to take photos while my sister-in-law held one to his belt - all these conquests. And these two trips might be the last ones he takes.

I know he's probably not dying, and certainly it could be worse. But it makes me so angry. I'm rambling and it's hard to type.

So - I won't know anything for awhile. It's a week until he gets back and then he has to arrange to see a specialist. I don't know how quickly he'll be seen - I don't have many details yet (he didn't want to talk, so I heard everything from my Dad, the master of omission; Mom was probably too upset to talk). I don't know anything about his care at the moment. I still have my connections in the nursing school, so I'll have whoever he seeing checked out.

[Ghoulish Delight]

Gah, this hits so close to home I can't even organize my thoughts into a response. :( Easier said than done, but I try to remind myself that thoughts of guilt, regret, or "if only" are counterproductive. Make lemonade, and all that.

[Motorboat Cruiser]

I wish I could say something wise but I'm at a loss for words as well. We will keep you and your brother in our thoughts and prayers and hope for the best outcome possible. That's a terribly young age to be facing something like this.

Just take it one day at a time, Prudence, and please keep us updated.

[Prudence]

Kevin sent out one batch of info via email before he left - so, one last update before the specialist.

"As for other treatment options, this type of tumor is not something that can
be treated with chemotherapy. Radiation is possible, but it would be in
addition to the surgery (not instead of), of questionable benefit for
treating the tumor, and would kill the cells in the hip socket, forcing a
hip replacement in 5-10 years so that is definitely not a good option.

To summarize, the options are surgery and the subsequent permanent
disability, or leave the tumor, which the doctor does not feel is a safe
choice at this point."

With the aggressive growth, they're concerned that it will become malignant, if it hasn't already. Frankly, at this point he feels his best option is miraculous healing, although obviously he'll be seeing the oncologist(s) when he returns.

Meanwhile, I'll be knitting a pair of socks for him.

[Gemini Cricket]

It's not easy when a younger sibling is going through a lot of hard times. It's hard not to absorb the sad stuff. But you have to try as hard as possible not to let it drain you. It is hugely sad and painful, but now is the time to be strong for your bro. Be strong for him and for yourself. Because the sad stuff will only eat away at you and your own mental state and leave you incapacitated to help him to the fullest of your potential.

My little sister does really stupid things some times and I worry for her a lot. But I realized that overworrying only makes the worry come out by accident when I'm speaking with her. That usually makes her feel worse. I just suck it up and stay supportive. My lil sister has lupus and it makes me sad all the time, but not when I'm talking to her. (I'm an actor after all...) :)

Nothing you can do can fix his ailment physically. But you bet your bottom dollar that there's lots you can do to help his mental and emotional state. Take some time to work through your grief and guilt and then give him a happy call or visit. Don't talk about the physical status of his hip for longer than a few moments and then spend the rest of the time bonding with him and being happy. Because maybe he wants to take his mind off of it.

I hope I'm not sounding insensitive. But I'm trying to put myself in your place and come up with a plan of action. And that's what I would do.

Hugs to you, dear Prudence. Hang in there. Chin up, M'Dear.

[Scrooge McSam]

{{{{Pru}}}} No, it's not fair.

[Gemini Cricket]

Just to add a taste of levity to this thread...

One of my grandfather's favorite expressions:
"It's not right and it's not fair. Like a Hawaiian's left leg."
:D

(I discovered later that he got that joke from an Agatha Christie movie 'Evil Under the Sun'.)

[LSPoorEeyorick]

Oh, lady. I am so sorry to hear this. It's not fair at all. Frankly, it sucks. Please know that I am sending many things-- hugs, thought, prayers, energy, among others-- in your direction, and your brother's. I am so angry at the world sometimes. Why can't it play nice?

[Moonliner]

Could you please better define: "miraculous healing". I truly hope your family is not waisting time and financial resources while the tumor continues to grow inside him on things like faith healers and south of the border clinics. While modern medicine obviously can't cure everything, an aggressive tumor, as you described, is best treated by invasive surgery. It sucks, it's not fair, and yes it's far from a perfect solution but it is still your best option.

Best of luck to both of you, and please keep us updated.

[DreadPirateRoberts]

I'm sorry. I know how you feel. My younger sister had non-hodgkins lymphoma, and may times I wondered: why her? why do these things happen?

I wish I could tell you something to make you feel better.

[Matterhorn Fan]

So whatever it is that you do when you hear things like this, could you please do it?If you were in town, I'd be baking cookies for you. But you're not, so the best I can do is be sad for you and your family and send my prayers and good thoughts.

[katiesue]

I'll be sending positive thoughts for you and your brother.

[Stan4dSteph]

Prayers for your brother, you and your family.

From what you describe of your brother in this thread, I have faith that he will be able to overcome any obstacles that this surgery might cause.

[AllyOops!]

Pru~

I'll be praying & praying and sending every positive thought your way! Prayer & hope is what always carries me through life's darkest moments. That, and of course, the love and support of friends & family, and you certainly have that here!!

I, too, have been consumed by the very same thoughts you are having! All I can tell you is "don't go there!". Once you are in the dark & guilty abyss, getting out is very tough. Please don't go into punishing yourself! Think of it this way- I've gone there for you already- it's dark and bad so now you never have to go! I'll keep you from it! :)

When I lost my best friend & my boyfriend, I used to always, always question why I got left behind. They were talented, smart, full of life, fun and everything that should encompass a human being. I've made more mistakes then I care to count. My best friend was my voice of reason. I finally had to tell myself that I will never know the reason until it's my turn to go. Knowing that there isn't an answer here on earth helped me. Even if there was an answer, it would never be one I'd ever undertand, you know?

When my Mom, Stepmom (who I refer to as my sister because we're so close in age) and both of my Grandfathers were diagnosed with cancer, I used to always imagine this invisible tube. They could run it from their body to mine, and the cancer would pour from them into me. Not that I ever wish to have cancer, mind you, but I wanted to be able to take their pain away, and if someone had to have it, it should be me!

When I told my Mom that, it crushed her. She told me, "I would NEVER have wanted you to have it".

Please know you have all the support & love in the world here. You have an abundance from me as well! Maybe we can talk later, okay?

Love & {{{HUGS}}}}

~A

[Eliza Hodgkins 1812]

My thoughts are with you and your family, Pru. In this case, I'd say a disability is far better verdict than death. Given how supportive you are, and I imagine the rest of his family and friends are, he'll get through it, no matter how much hard work it might be. It's heartwrenching, of course. Nothing changes that. But it's where his life is taking him and it is what it is. It's not your fault, of course. It's no one's fault. That's what makes the tragic moments so difficult. There's often nowhere to turn one's anger and sadness but within. That only eats people up.

Steady on, you two.

[Prudence]

Could you please better define: "miraculous healing". I truly hope your family is not waisting time and financial resources while the tumor continues to grow inside him on things like faith healers and south of the border clinics. While modern medicine obviously can't cure everything, an aggressive tumor, as you described, is best treated by invasive surgery. It sucks, it's not fair, and yes it's far from a perfect solution but it is still your best option.


(sigh) I thought I made explicit that he would, of course, be seeing the oncologist. However, since the medical options aren't particularly attractive, he would prefer that it just go away. He's very religious. However, he's also a scientist. He's not a wackadoo nut. But he doesn't see anything wrong with praying for a miraculous recovery between now and the date of surgery. As far as I know, one can hope for a miracle without abandoning conventional treatments.

[Moonliner]

(sigh) I thought I made explicit that he would, of course, be seeing the oncologist. However, since the medical options aren't particularly attractive, he would prefer that it just go away. He's very religious. However, he's also a scientist. He's not a wackadoo nut. But he doesn't see anything wrong with praying for a miraculous recovery between now and the date of surgery. As far as I know, one can hope for a miracle without abandoning conventional treatments.

Of course you are correct, I interpreted "when he gets back he'll see the oncologist" to mean that he would be delaying treatment while searching for a miraculous cure. I expect I have a blind spot here because I loath all of these "spiritual" clinics that prey on the despondent for what financial resources they have and do nothing but harm patients.

[Prudence]

Of course you are correct, I interpreted "when he gets back he'll see the oncologist" to mean that he would be delaying treatment while searching for a miraculous cure. I expect I have a blind spot here because I loath all of these "spiritual" clinics that prey on the despondent for what financial resources they have and do nothing but harm patients.

Nope - just taking off for a pre-scheduled trip to Glacier, Montana with the in-laws. (No accounting for taste.) Given the circumstances, he's not interested in delaying the trip and one more week probably won't make a difference.

Fear not, the Zobrists are a well-educated, mostly rational clan. Hell's bells - we collect cancers like ... something that collects a lot. Apparently my grandmother had discussions with a mayo clinic at some point, because family cancer clusters are common, but family cancer clusters where the cancers are all different is another story.

So confession - this is part of why I'm so terrified. Everyone in the family gets cancer. I've always assumed I would too, eventually. But my brother - no one's ever had it this young. I worry for him, but I also worry for me.

[Mousey Girl]

I am at a total loss for words.

(((HUGS)))

[Drince88]

Hang in there!
{{Hugs}}

[€uroMeinke]

Good Heavens I'm in horror over what your poor brother has laready had to endure! Sheesh, I will keep both of you in my thoughts and hope either science or a miracle works in his favor.

[alphabassettgrrl]

Your brother is lucky to have such a supportive family. Prayers sent to the gods for all of you.

[Prudence]

It's not a happy update.

I talked to the faculty where I used to work and got a recommendation for "the" guy to see in this area. And he was covered by my brother's medical plan. Which all seemed wonderful...

Except that the referral didn't make it from point A to point B the first time, and everyone pointed their fingers at someone else. And then when it did go through, apparently they were rude to my sister-in-law over the phone and don't have any openings until mid-September. So now my brother says he's embarrassed to even work for the UW since they treat cancer patients so poorly.

And, now he's so upset he's resolved to just go get carved up ASAP and forget trying to find other options.

And it's my fault. Because I got people's hopes up and couldn't make it work and now he'll be a deformed cripple and I get to live with that guilt for the rest of my life. I should never have gotten involved.

So, there's the glorious update. If they tell me when surgery's scheduled, I'll update further, but I suspect I won't know anything until well after.

[Not Afraid]

Don't bash yourself for trying to help. You did what you felt was a good thing - and I think it was. You can't take responsability for other peoples' idiocracy.

[Gemini Cricket]

And it's my fault. Because I got people's hopes up and couldn't make it work and now he'll be a deformed cripple and I get to live with that guilt for the rest of my life. I should never have gotten involved.
How is it your fault, Prudence? You tried your best to cheer people up. You tried to make a difference in a very tough circumstance. You should pat yourself on the back for that.
People live very fulfilling lives in a wheelchair or with a cane or a artificial leg. He needs to make the best of his situation whatever it may be. You'll help, but his condition is not your fault. You didn't give him cancer.
If you feel guilty, Prudence, that's your doing. Don't take that on. You have nothing to feel guilty for.

[katiesue]

You tried to help, like a wonderful sister would do. You can't control others.

[Matterhorn Fan]

It's not your fault. You have nothing to feel guilty about.

Hope is a good thing. Not everything works out, though. Maybe he's gonna end up with a really good doctor who isn't working at the most prestigious place. Heck, who knows? Maybe Dr. "The" would've told him the same things as his other doctors.

He should look into other options before he goes and gets himself all chopped up, though. But I can understand his frustration. When he's calmed down a bit, maybe you can help him do some more research? In the meantime, maybe you could take him out for ice cream?

(Ice cream makes everything better.)

[Snowflake]

I wish I had some wisdom to impart. I can impart <<<<hugs>>>> and support in the form of good thoughts and prayers for you and your baby brother.

Whoever said life was not fair was damn right in this case.

I can hope that somehow, something can be done to arrest the growth of the tumors and help with regrowth of lost muscle tissue.

Then again, hopefully there is some way from your brother to adapt for hiking, after all, people without limbs hike, ski, bike, and rock climb!

My prayers are with you Pru, and brother too!

Oh, and NOT YOUR FAULT. Do not feel guilty.

[BarTopDancer]

Repeat after me:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

[Matterhorn Fan]

Woah. The Serentiy Prayer. I haven't seen that in a looooong time.

[RStar]

I know how easy it is to blaim yourself. But everyone here is right. Unless you went down there and missplaced that paperwork, it can't be your fault. And if your brother makes the choice to do something, that's not your fault as well. I know you are going through a lot of emotions, and we only see the tip of the iceberg here.

But please, take care of yourself, then take care of you brother. I will keep the two of you in my prayers. They can do wonders these days with muscle reconstruction!

The best of luck and hugs to you!

~Bob

[Nephythys]

:( It does seem horribly unfair when life throws things like this at us-I'm so sorry he is going through this- I'm sorry you are.

I also understand the fear- when I had cancer at 30 I really started to believe I was seeing what would eventually kill me. I still struggle with that fear- and I know how hard it is.

Hugs- to you and him and your family. I hope some better news will come.

[Prudence]

Thanks for the kind words, all. I appreciate it, as I appreciate your thoughts and prayers for my brother. I still struggle with guilt. I can't stop thinking that there was something I could have done differently that would have made the specialist work out. Which is just adding to the existing guilt that this is happening to him, the "good" one, when I've been the worse person.

I don't know how to behave any more. I start to cry at work for no reason - which is significantly more complicated now that I no longer have a private office. I can't make it better and it just eats away at me. I'm supposed to protect my family and of course I can't. And I'm terrified of what might happen to me. At least Kevin's tumor is benign - will mine be malignant? Treatable like my dad's or untreatable like my grandmother's?

I don't know how to act around my family. If something good happens to me, I don't want to say anything to them because it's not fair for me to be happy when this is happening. And none of my complaints could possibly compare so they're best kept to myself. But then I'm withdrawing from the family, and that's not appreciated. I don't know how far to push and when to back off. None of us in my immediate family respond the way we're supposed to.

So that leaves me about as down as I can ever remember being. Which makes me feel more guilty, because I'm not the future cripple. But what right do I have to be happy now? How could I be happy? And why am I so concerned about what other people think about how I'm reacting.

Sorry I'm blabbing. I don't have other outlets, really. We don't talk amongst ourselves, my family.

[Snowflake]

But we're your virtual family, too, Pru. You can always talk amongst us (me) and I will listen without recriminations.

Feeling guilty is natural, but don't let it rule you. Happiness in any form, especuially during a trying time such as this, is a boon companion. Welcome happiness in any form, welcome the pain too. (GAH, I sound like Dr. Effin Phil, sorry)

How can you say you were the bad one? Wild perchance, more experamental? You stepped outside the box, does not make you bad! Take it from the "good child" - you're not bad!

Virtual hugs don't do much, but there is a reason you're posting here, and that's for support and I think you have that in spades on the LoT.

With much care and concern

Donna

[Matterhorn Fan]

Prudence, if you were nearby, I'd buy you a kaki gori.

[Prudence]

Prudence, if you were nearby, I'd buy you a kaki gori.

Is that like if you had two dead mice you'd give me one?

Dang my family could use a Disney fix about now.

[RStar]

Is that like if you had two dead mice you'd give me one?

Dang my family could use a Disney fix about now.
I know that's how we work it out. Always makes us feel better!

[Prudence]

He made an appointment with the specialist. No openings until September 18, and he still might cancel depending on what his doc and the specialist at the Swedish Cancer Institute say, but at least it's on the books. And he's going to see at least one specialist.

Tomorrow we may learn more; he's meeting with his doc to go over the MRI. Might get more info on the timeline - how long can he wait, etc...

[Eliza Hodgkins 1812]

My thoughts are with him. I hope all goes well.

[Prudence]

x-posted:

Kevin just called. The MRI showed the tumor is entirly self-contained and sitting right under the skin, on top of the muscle. No tendrils, no spreading. The surgeon can just pop it out.

This is unlike the first time he had this tumor, and totally not what they were expecting. It's not how this sort of tumor usually works.

I'm going to go be flabbergasted and thankful and all flavors of relieved now.

[Ghoulish Delight]

Huzzah! I think the tumor knew who it was up against and gave up.

[Not Afraid]

Think of it as a really bad zit.

[LSPoorEeyorick]

Wahoooo!

[Snowflake]

Well, now this just makes my day to hear this!

Envision me doing the Snoopy dance! (Hey, we need an icon for that, seriously)

http://www.geocities.com/~rudyfan/snoopy.jpg

[Motorboat Cruiser]

That's reallyy good to hear, Prudence. :)

[RStar]

Yipeeeeee!

Okay, you can breath now.

[Prudence]

No kidding! We're really shocked - but in a good way! Last time it was all tendrily and they tried their best to get it all but were worried that they didn't and it would come back. Hence the drastic measures they were preparing to take this time - why they were lining up different specialists for him. The MRI really surprised the docs.

[wendybeth]

Too very cool, Pru!:snap::cheers::snap::cheers:

:)

[Matterhorn Fan]

That's awesome!

Behold the healing power of the LoT!

[katiesue]

Teriffic news. I'm so happy for your brother and you!

[Drince88]

Yea! I was glad to read happy news when I opened this thread!

[alphabassettgrrl]

Hooray!!! That sounds like a much simpler surgery than you were thinking about before. :)

[innerSpaceman]

oh my. I've purposefully stayed away from this thread ... hoping the news might be good when I had the courage to peek again.

I feel sorta guilty myself for not checking in to offer support, but Pru ... you were in far better emotional hands than I could have held out. The experience with my nephew leaves me a basket case about this sort of stuff. But I will take the fine advice I knew you would be given by others, and ditch the guilt.

I hope things continue to bode well for your brother, yourself, and your entire family.

Hugs galore.

[Prudence]

Since we're reviving this a bit, surgery date is set for September 1. So if you could point your happy thoughts in this general direction on that day, it would be much appreciated.

And hey, at least this time they know he's allergic to penicillin. (That was the surprise last time.)

[Prudence]

Sorry to dredge this up again, but today's the slice and dice. Starts at 10am PDT. Scheduled for 4 hours. They will be shaving some muscle (something margins something) but hopefully it will look in person like it looked in the MRI and that will be the extent of the muscle removal. Nothing's certain until it's over, though, so good thoughts and what not will be appreciated for the next little while.

[katiesue]

Sending positive thoughts to you, your brother and all your family.

[Ghoulish Delight]

Plenty of what not heading your way.

[Snowflake]

Healing thoughts and vibes in your Brother's general direction (you're too, for that matter)

[Not Afraid]

I hope things are currently undway and going well. Keeping you and your family in my thoughts.

[RStar]

Thoughts, prayers, and good wishes heading your way right now. Please keep us aprised, and thank you for the update.


(((((((Hugs))))))))

[Motorboat Cruiser]

Keeping you in my thoughts and hope everything goes well. ::hugs::

[Eliza Hodgkins 1812]

Positive thinking x infinity....

[Mousey Girl]

((hugs))

[Prudence]

x-posted

Okay - just got off the phone with mom. It's not great news. They did have to take one whole muscle. They were able, at this time, to leave the one going into his butt -- gluteus minimus I think -- so it's not as debilitating as it could have been. The doctor thinks he'll need a cane at first, but that the gluteus minimus will grow and help compensate and, from a cosmetic standpoint, fill in the space.

They don't think it's malignant, but there's still a 40% it will grow back.

[Disneyphile]

I'm sending your brother all the best healing wishes I can muster, and all the hope that it's gone for GOOD.

[Matterhorn Fan]

If his butt's not big enough, I could spare some fat. ;)

Seriously, though, I hope all is well.