Got off the phone with Holly’s SO, and we chatted for fifteen minutes, and man, the guy is so frazzled from lack of sleep, you could just feel the anxiety and fear and what not in his voice. The whole time I was talking to him all I could think was this poor guy needs a massage and a hockey puck sized xanax and a featherbed with egyptian cotton sheets.
At any rate, according to Greg, their surgeon is a no bullshit guy who does not mince words. For some reason, I thought her surgeon was female, but I guess I got those details wrong. Still do not know his name, but she is in the Long Island Jewish Medical Center (I think). Apparently the guy has 30 years of experience, is a little bit gruff, but very direct. When Greg told me that my reaction was “That’s exactly what you want” and he started to talk about how much everyone loved the guy, even though he was kind of blunt prick. Deep down, they knew he cared. You’ll understand why at the end of this post.
At any rate, after the clipping procedure yesterday, Greg approached the surgeon late last night and asked him what he thought and to just be honest with him. The doctor looked at him and said (and I am paraphrasing) “I didn’t want to do this surgery. It made me uncomfortable. It was a very bad thing in a complicated place, and I was hoping we could handle it with the coiling procedure. Again, I did not want to do this surgery because it would have been much better to have the other procedure work. Again, this is a complicated procedure, and there were complications. There was a lot of bleeding. Her vitals and everything were good, her CT scan was good, but I honestly don’t have anything to say definitively, and I can not tell you whether I feel good or bad about her outcome. I don’t know.”
That was at about ten o’clock last night, and Greg went home and had a restless night, went in at 8 am, and the surgeon had already been there at 6 am. Greg talked to him, and the surgeon basically admitted he couldn’t sleep so came in early to check on her, and her vitals were all solid, and he woke her up and even though she was heavily sedated, was able to give thumbs up and wiggle her toes, and the neurosurgeon said those were both “complex neurological functions” and that for once he felt positive and told Greg that “We’re in the game.”
I think words like that from a guy like that are reason for optimism, as did Greg and everyone else, so I’m in a good mood. Greg went and saw her, and she got super excited and tried to talk, but she was so excited that it was not safe for her, so they upped her sedation for the rest of the day and he stayed away for the rest of the day, sitting in the lobby. What a cruel hoax life can sometimes be- they both want to be together, but it may kill one of them. Her face is apparently very swollen from the surgery, and she had her head shaved, and she is still in really thick, but it looks like things are positive at this point.
My good buddy Tammy worked at a cancer center as a fundraiser and is sending me some links for some super nice scarves, her car is home from the airport, her mail is under control, and now the only thing to do is to cross your fingers.
The Very Revered Crimson Fire of Compassion
AND she has kind, loving people around her.
John Weiss
If I was a prayin’ man, I’d do that. Best wishes.
JW
Mnemosyne
It sounds like she’s in good hands, medically, so now all you can really do is wait, unfortunately.
Emma
My surgical oncologist is the same way. No softsoap, just “this is what’s going on and this are our options.” He can sound totally cold when he’s discussing things with you, and I have an acquaintance who switched doctors because he wasn’t “sympathetic to her situation.” I don’t want sympathy, I want competence and good care.
Tommy
@Emma: My mom was in the ICU for an entire month this time last year. Test after test. Operation after operation. A parade of doctors (I think seven in total). I would have killed for a blunt and to the point doctor like this. I don’t think I ever got a straight answer to my questions from any of them. I know some people might be turned off by blunt. I am not. I am turned off by people not answering my questions in a direct manner, even if it might be painful to hear.
daize
John, thank you for the update. Take care.
rikyrah
thank you for these updates. sending Prayers for her.
raven
@Emma: They have to be, there is no other way to do what they do.
hildebrand
The whole thing is heartbreaking, and yet I hold out a great amount of hope. The doctor sounds brilliant. I want them to be able to enjoy each other’s company for a long, long time.
PurpleGirl
The neurosurgeon who did my hemi-laminectomy was a blunt fellow too. It was the first time I’d ever had surgery and felt that he was more than competent and that made me feel confident in the outcome.
Keeping Holly, her SO, family and friends (especially you JC) in my thoughts and prayers.
hildebrand
@Tommy: Yep. My wife is a Lutheran pastor, and she spends a great deal of time getting straight answers out of doctors so that she can give honest answers. Her parishioners have come to learn that if they can’t get the information, she will. It is so important for the process to have proper information.
jl
Good luck to Holly.
My mom, who has tested her superb family genes to the limit with some (edit: very) bad health habits, has several doctors, all of whom have an excuse to stop by when she lands in the hospital They (both he’s and she’s) are all blunt no nonsense people, but only (coincidentally?) the cardiac surgeon comes off as slightly dick-like.
Problem is that they seldom say the same thing. Often here completely different things, all delivered with no-nonsense confidence.
Oh well. Maybe it’s that they are usually looking at different issues. But still.
Elizabelle
Fingers crossed. Get well, Holly.
TaMara (BHF)
I’m a little teary after reading that. Not just because it all sounds scary, but hopeful, but also because you care so much and do such kind things. You’re a good man
Charlie BrownJohn ColeTommy
@hildebrand: My problem was we could see she wasn’t getting better. She kept going downhill (she is all better now). It was very clear to me they didn’t know what was wrong with her. I joke it was like the TV show House, where they think they know what is wrong, they treat her and it only gets worse.
They were all so happy and up beat (and that may work with other people — not me). They knew what was wrong and they fixed it. She’ll be all better.
Then when we saw her take turns for the worse it make that harder to watch.
Honestly we still don’t know exactly what was wrong with her. I’ve told my father many times they were covering their rear ends for fear of a lawsuit.
Little Boots
oh, great.
Little Boots
john’s in a mood.
cbear
It’s just heartbreaking that this beautiful young couple are having to go through this so early in their lives .
From everything that Cole has written, Holly seems like a truly wonderful girl and Greg a really stand up guy—we can only hope that she makes a full recovery and that this trying time brings them even closer together.
All the best to both of them.
Little Boots
seriously, ballooners, I count on you.
Tommy
@cbear: It is sad. Young people shouldn’t have to deal with all of this. But it might make them grow closer. I mentioned in other comments here my mom was in the ICU for an entire month. We were close, but even closer now. I realize more then ever that every second I have with her is important. I mean I knew this, but didn’t act on it enough. Not anymore.
Kristine
::sending good thoughts::
Gin & Tonic
@Little Boots: Maybe tonight’s not the night?
Little Boots
@Gin & Tonic:
oh, they come. sooner or later, they come.
farmette
Great news. Her reaction was bilateral (two thumbs up) and top to bottom (fingers and toes) which includes higher cortical function (she understood what he wanted her to do). Very good signs after an injury and surgery such as hers. Her internal incisions have to heal so they will keep her sedated and still for a short time. So much more involved in her care. All best wishes for complete recovery and soon.
Little Boots
in the meantime:
https://www.youtube.com/watch?v=sR47TZdJg64
Tommy
@farmette: I have not followed this entire story, but I sure hope her insurance allows for rehab if she needs it. My mother’s insurance did after she left the ICU after a month and she said it was about the most important part of her care. She hated it every second, but knows she needed it.
Little Boots
let’s see if this works
https://www.youtube.com/watch?v=5UA3kFSvdN0
The Dangerman
@Emma:
Laurie/House took it to extremes, but the biggest jerks tend to be the best MDs.
Little Boots
@The Dangerman:
like steeplejack, when he’s not in a mood.
a hip hop artist from Idaho (fka Bella Q)
@Little Boots: Are you performance art? This show should close for the evening. Kthxbai.
Omnes Omnibus
@Little Boots: Pick your threads. Seriously, dude.
a hip hop artist from Idaho (fka Bella Q)
@farmette: That was my take as well. Very good signs. Cole, my thoughts are with you, Holly, her SO and family/friends, and of course you. Thanks for the update.
Little Boots
@Omnes Omnibus:
no and no.
Debbie(aussie)
Thanks for the update. Keeping you, Holly & Greg and family & friends, in my thoughts.
Violet
Thanks for the update, John. Keeping Holly in my thoughts. Sending positive energy to her.
Hopefully they can figure out a way that they can be together in the room. Like with parents of preemies now getting to hold their babies, the medical profession has figured out that touch and being together is beneficial for them. It has to be similar for adults. I hope they can find a way that is safe for Holly so her SO can be with her.
Ruckus
@Little Boots:
Usually you are just annoying. Actually that should be very fucking annoying.
But in this thread? You’ve gone way beyond, all the way past fucking obnoxious.
And don’t bother to answer, this is the one and only time I will have anything to say to you.
Little Boots
sorry, john, I’ve been very rude and not paying attention.
hope you are good.
scav
Another fan of blunt competent doctors, especially blunt doctors that can be blunt about uncertainty. One can be so at sea in an ICU that a little bluntness can be a solid anchor amid the chaos. Sympathy is squishy and has low information content. Blunt and reasonably patient if at all possible. Hoping this continues well. Patience is a hard part.
Ruckus
Now that that is off my chest.
Sounds like good news for Holly. It’s a long slog back, good luck for everyone with everything.
Jewish Steel
I follow this story, I’m sure, with 1/1000th of the nervousness of the parties involved. But it’s there, I feel it.
Hang tough, Holly!
Tommy
@Violet: I thought many hospitals in the ICU at least, had done away with visiting hours restrictions. I know when my mother was sick there was one of us there 24 hours a day. They just had want they called quite hours from like 8 PM until 8 AM. We were never asked once to leave. Heck the nurses brought us meals, pillows, and blankets. Mom was on a lot of drugs, but when we held her hand she’d squeeze it. She knew we were there.
Omnes Omnibus
@scav: My dad tells a story from the time of my birth…. Mom has O- blood and I have O+. The doc mentioned this and Dad said, “So I must be Rh + of some kind.” The doc said, “Not necessarily.” Dad was nonplussed.
Ruckus
@scav:
Blunt is good. Honest, truthful and informative is much better. A lot of surgery is brutal, especially in recovery. One should know what to expect, both the normal and not quite so normal. It really does take the stress level down a lot, and that is vital.
Violet
@Tommy: I think they have but in cases like Holly’s when she gets excited and it might cause something in her surgery site, which in this case is her brain and a very delicate location, to be negatively affected then they probably have to limit visitors. That’s why I hope they can find a way to make it work. Maybe he can visit when she’s heavily sedated. Just like people in comas can hear what people in the room are saying, she might know he’s there even when sedated.
I am completely just thinking out loud. I am sure the doctor and medical staff are making the best decisions for her.
Mary G
Will keep on praying for Holly, and Greg too.
Felonius Monk
Glad to hear things are on an uptick. Best wishes for Holly’s speedy and complete recovery.
A Humble Lurker
I don’t much care for blunt. I can’t tell the difference between blunt and ‘I don’t really give a shit about what’s happening to you. I get paid either way.’
Tommy
@Violet: Yeah I don’t know the entire back story on Holly. I don’t spend much time in hospitals (which I guess is a really good thing) and was stunned we could just sleep in the room and nobody cared. But we were thankful for it. But then we were in a pretty progressive hospital and like in the top one percent of hospitals in the nation. So I was kind of wondering out loud to you if they might be doing something other hospitals don’t.
Outside thinking of how much the nurses were rock stars, another thing I will never forget is that place didn’t seem to smell like a hospital. Every time I’ve been in a hospital I always think, “this doesn’t smell right.” Oh and ALL the ICU rooms were single beds with one nurse for two patients. That seemed good, but unusual. If you needed something you had it in seconds.
CaseyL
This kind of surgery involves long hospital stays, precisely because they want to make sure the patient doesn’t start bleeding again.
Can Greg ask the surgeon how long it’ll be before he (the surgeon) has some confidence the sutures and block are holding? That would give them both an idea as to how long the uncertainty will last… knowing might reduce Greg’s stress a little, if he has some kind of timeline.
Heartfelt best wishes to Holly and Greg; and to their Mighty Support Network (which includes John, of course).
max
Well, yeah. It’s at the base of her skull! Right next to her actual spinal column! Not a place you really want to be dicking around with a scalpel, lest a tiny slip of the hand cause your patient to say, be unable to breathe on her own for the rest of her life or not be able to move her legs or something like that.
And that’s overlooking the whole ‘bleeding in the skull’ issue. Which is dangerous. Like arsenic dangerous.
That said, they did the procedure, so that means the aneurysm is done as they got the artery closed up. In which instance, she’s in good shape.
So, her prognosis is good. YAY!
max
[‘Now the undramatic and slow healing part.’]
Jordan Rules
I love the way Scav broke it down.
Continuing to send good thoughts JGC. Love that we can all find lessons and reminders in sharing like this.
MikeInSewickley
As always, I come here to see the real world and get my political/society daily fix as well.
Stories like this, showing the better side of human nature, are why this site is tops and is one of the few I contribute to.
John, thanks for letting us into a piece of your life and that of your friends. They are fortunate to have friends like you and I wish them the best of outcomes.
Omnes Omnibus
@A Humble Lurker: Sometimes one simply has to be blunt to convey information. I have tended to be diplomatic and to soft pedal things when talking to clients (I am a decent hand-holder), but there have been times when I needed to make sure that the client understood something – like “No matter what I do, you are going to prison for a while. And you need to realize that.”
scav
@Ruckus: We’re probably describing similar things. I like not having to nag nag nag for information and their time is limited as well, especially if they’re good. So in those situations erring slightly on the side of no elaborate social blather is fine with me, especially if it speeds information transfer. Nurses etc. can help with more general information and all the other needs and are less time-contrained and they’re critical too.
A Humble Lurker
@Omnes Omnibus:
I guess it comes down to whether or not the bluntness is actually needed…
Origuy
Good luck to Holly and the others discussed here. I’ve got a story, too. Warning: Unpleasant medical info ahead.
I’ve mentioned my housemate and best friend, who has the genetic disease Ehlers-Danlos Syndrome. It affects the collagen, so that the connective tissues in the body don’t have the hold they should. Usually this presents as hyper-flexibility and loose skin, but there are other effects. A few days ago she told me that her uterus had prolapsed suddenly. This is something that happens to EDS victims, but usually not suddenly. She saw the GYN yesterday and found out the this wasn’t what was going on. The epistiotomy scar that she’s had for 28 years had, in her words, decided to unzip itself, and her bladder and intestines are pushing out. Freaky scary, but apparently not life-threatening. Now we’re just waiting for MediCal to approve the surgery that she’ll need to push her stuffing back in.
She is a walking season of House.
Omnes Omnibus
@A Humble Lurker: OTOH some people don’t want anything but bluntness. Other people need a more gentle approach. Figuring out who needs what, that is the challenge.
@Origuy: Holy fuck.
Alison
Jeez. I’m glad things are staying on the positive side, and hoping and praying they continue to improve. Thanks for the updates, JC – I’m sure I echo many here when I say that we may not know these people from Adam and Eve, but they matter to you, so they matter to us.
A Humble Lurker
@Omnes Omnibus:
That’s true. I guess in my case, the worst case scenario is always front and center in my mind. So when someone’s blunt with me in my head I’m usually like ‘I friggin’ know that! I don’t need you to tell me that!’ and then I get even more freaked out.
That’s just me though.
Tommy
@A Humble Lurker: My problem is I didn’t want to be that idiot that went on WebMD and then thought I was as smart as you know, a doctor. But cause they wouldn’t ever seem to give me a good response to some pretty basic questions, well that is what I did and I totally freaked the fuck out.
Ash Can
Many thanks for the updates. It’s great to hear positive news.
Omnes Omnibus
@A Humble Lurker: The thing is, I wouldn’t just be telling you the worst possible case. I would also be giving you the odds. “Worst case is x; best case is y; and odds are that z is what will happen.”
Omnes Omnibus
@Tommy: Sometimes you don’t get an answer because there is no answer to give.
Tommy
@Omnes Omnibus: My mother had a number of problems with your her digestive system. They had done two surgeries and honestly were not sure what was wrong. She keep bleeding and got sicker and sicker. They kept using a scope through her anus, which they said was safer then surgery. Understood. But each time they were like, “we think we got it.” Each time she’d come back to the room it was like she was aging years in front of our eyes. And well they didn’t fix it and they did it again and again.
I couldn’t get a straight response to what I though was a very basic question. Why don’t you open her up to ensure you fix whatever is wrong and just do it once. How many more times are you going to use that scope and then not even be sure if you fixed the problem. It looks like you are killing her. Maybe slowly but I don’t know how much more she can take.
And in the month she was in the ICU she had different seven doctors. That didn’t inspire confidence.
notoriousJRT
All the best to Holly and all the fine people who love & care about and for her. Glad to hear the positive news.
hitchhiker
NICU is as close as we get here in the developed world to hell. What I learned when my husband was there is that the brain/spinal cord is massively, unimaginably complex and unpredictable.
It’s excellent news that she can respond to commands all the way down to her toes — really.
Omnes Omnibus
@Tommy: In your profession, do you do the best you can with the information available? Do you not try to avoid fucking messing with things any deeper than you need to do? My guess is that doctors function the same way. They aren’t always right, but neither are we.
Omnes Omnibus
@hitchhiker:
QFT
Roger Moore
@Omnes Omnibus:
Especially if you don’t have a lot of time to feel the people out and know what kind of talk they need. If a doctor can’t figure it out, they’re probably better off being blunt. People may want to have things expressed nicely, but they absolutely need accurate information about what’s going on. It’s better to risk offending someone with bluntness than to risk failing to give them the information they need.
Ruckus
@scav:
Depends on the person as to the results. But there is a difference. I once had a specialist who was blunt. Stunningly blunt. And talking to me like I was about 40 yrs younger. And basically when he was done, we were done. I liked the info but the delivery sucked and actually was incomplete. I have also had docs who gave me all the info, not in the most miniscule detail but all the info. Asked questions and allowed me to ask them. Lead me to ask questions that I might not have thought of but which in knowing and hindsight were the right questions. There is a difference, in some instances the end result is the same but in more complicated situations our lack of knowledge keeps us from even knowing what to ask, so the honest, truthful and informative is better.
Omnes Omnibus
@Roger Moore: You are right. As a lawyer, I have always dealt with things that develop over time. I can determine how to best handle a client. The Doc who did my ACL replacement told me I was a young guy with an old knee. Then he asked how I wanted to handle it, brace or surgery? Young or old? I chose surgery.
Ruckus
@Ruckus:
It may be that we also are interchanging the terms, direct and blunt. To me blunt is delivered as more of an authority figure, one that dares to not be questioned, contradicted, direct gives the same info with a more open and two way delivery.
If there is little time to act and no time to question then blunt may be best or really the only option. Any other time, direct but open communication is better.
Omnes Omnibus
@Ruckus: Good point.
BruceFromOhio
@Alison: Was just ruminating on this. Thank you for bringing the thought into this light. I’m grateful for those that love and care for the stricken, no matter how far away. That a loved one is at hand for when one awakens from the terrifying journey, to know that someone waits and watches, these give strength for healing.
? Martin
@Ruckus: ‘Blunt’ usually infers impact – what’s being delivered hurts, perhaps somewhat unnecessarily. ‘Direct’ doesn’t often have that connotation. You can be honest with and without consideration of the persons feelings. The former would be direct. The latter blunt. A compassionate person would choose to be direct rather than blunt in a situation where compassion could be afforded.
In professional settings I have a reputation for being blunt. Sometimes people don’t hear the message unless it hurts a little. Used judiciously its very effective.
hitchhiker
@Roger Moore:
My experience is that they bluntly deliver the worst possible scenario, maybe because then if things turn out better than that, everybody will be happy.
But here’s the thing. Doctors told me repeatedly 13 years ago that my husband would never walk again. They never said it to him, and neither did I. When he asked me (privately and desperately) what they were predicting I just said, “they don’t know.”
He was lucky, in what passes for luck in this realm. He does walk, using both a cane and a leg brace. Would he have fought so hard if he’d known it was “impossible?” Probably. But trust me when I say that there are people who believe what doctors tell them, even when they shouldn’t.
scav
@Ruckus: You seem to be including rude with blunt, whereas I’m just using it to exclude the usual social niceties that do nothing but waste time. Yes different people have different needs in these situations. Quick back and forth to establish what kind of person is involved and after that, don’t sugar coat it for me. What passes for the usual “bedside manner” drives (and drove) me up the wall during my three months on neurosurgical ICU. The paternal authority figure variant (“just trust me, I’m the authority”) was the most aggravating for me although others find that comforting.
Ruckus
@? Martin:
I agree. Some people don’t listen the first 23 times things are explained to them. Problem is the 24th really won’t then
have much affect either. So scaring or shocking them is the only avenue. But my experience is that most of the time blunt(as I sort of defined it above) is not necessary. That doesn’t mean that a doc won’t deliver it that way anyway, some of them are bound to be bullies, rather than just time challenged.
Anne Laurie
New open thread post up top, for those who just want to ramble around.
John, thanks for posting; I’ll keep Holly and all her friends in my thoughts!
grishaxxx
Fingers crossed here, too, and berakhahs, and whatever else may help.
Genine
I’m glad she’s stable. Still keeping her in my thoughts.
karen
I had a breast biopsy on Monday and found out that I have breast cancer this afternoon. I feel numb. I’ve been dead inside since the biopsy and now it feels like a dream. I will call the oncologist my primary care physician referred me to on Monday and find out what I need to do next. The PCP told me that I’m lucky because we caught it early and it’s confined to my milk duct and hasn’t spread to my breast tissue but it’s hard to comprehend.
Ruckus
@scav:
Sounds like you are right, we are sort of talking past each other, saying the same thing in a different fashion. That’s what makes things interesting! We aren’t all robots that process and accomplish everything the same way. And that difference can also make how we hear and understand issues more complicated.
And yes I think I am including a level of rudeness in there.
Ruckus
@karen:
Catching it early is vital. Mom had an early diagnosis at about 50, got it taken care of and lived to 95 with no more cancer. That was almost 50 yrs ago. Medicine has made a lot of progress since then.
Good Luck.
Violet
@karen: Sending good thoughts your way. Sounds like it’s as good as it can be, given the diagnosis. There have been so many advancements in breast cancer treatment in the last few decades, so you’ve got that going for you too. Be kind to yourself and ask for help and let people help you. Don’t be afraid to reach out. Keep us posted.
askew
@karen:
Sending positive vibes your way. I hope they are able to get rid of the cancer as quickly and painlessly as possible and you live a long healthy life after.
My family got bad medical news this week as well. My father was diagnosed with stage 4 esophageal cancer that has spread to his bones and liver and they think with radiation he may live 1-2 more years. We’ve all been in shock as he was doing fine just a month ago. He’s going to the Mayo since we are here in Minnesota for a second opinion and will likely start chemo in the next couple of weeks. He isn’t even 1 year into retirement yet after a lifetime of working too hard. It is heartbreaking.
Anne Laurie
@karen: That is a heavy weight to process. As others have said, there’s no “good” in such news but that you’ve caught it early is “less bad”. Did your PCP call it DCIS?
I will hold you in my thoughts — keep us posted, as far as you feel comfortable sharing…
karen
@Ruckus: I’m going to be 49 this year so it’s encouraging hearing about your mother.
@Violet: Thank you. I don’t really have a support network in Maryland and my folks are in NY but I will take all help that’s offered. I think the thing I’ll need the most help with is taking care of my Contessakitty.
@Askew: I’m so sorry about your father. It’s horrible to get news about cancer but especially when it’s so invasive. I’ll keep up my prayers for him and your family.
@AnneLaurie: it’s DCIS nuclear grade. There are more words but I’m not quite sure if they matter at this point.
Thank you for all your kind words, everyone. They mean a lot to me.
Origuy
@karen: My sister was about your age when she was diagnosed. She had the chemo, radiation, the whole thing. She found out five years ago, the day before her birthday. Today she’s as healthy as the horses her daughter loves to ride. And the only lump she has had to worry about recently is the one in her jaw after a root canal.
karen
@Origuy: That’s very encouraging, I’m glad for your sister. When I see the oncologist I’ll have a better idea of how to proceed. The nausea of the chemo is what I’m actually the most worried about. I have Rheumatoid Arthritis and I was taking 12 pills of Methotrexate which is another form of Chemo but at a lower amount than would be for leukemia. I was so sick on it, if I can get an anti-nausea drug, I’ll be able to deal. :)
Riley's enabler
Sending thoughts and hopes and white light to both Holly and Karen.
Cermet
My very best wishes for her speedy and complete recovery. And while the MD, nurses, technicians, and staff have done all they can, the recover is now incompletely in her own hands (the best possible case!) and that should be both a relief and case for great optimism considering her positive outlook and spirit!.
Cermet
@karen: I hope you too get better! Medical science has proven that Ginger (in capsule form of course) can reduce nausea a great deal. I know the drugs they have are good and I’m not saying don’t use them nor just use Ginger. The Ginger (IF the MD says ok) may help further or can be used until you obtain the type of nausea drug that finally gives you relief. I understand completely your pain so well – I lived through first three, then after a short recovery, again – almost four days of terribly agonizing nausea due to partial liver failure – death looked a lot better during that test – I know now that if that ever becomes complete failure I’ll NEVER allow that to continue – period.
Betty
@karen: Hi Karen, I was just remembering the day of my diagnosis this morning for some reason. You go in thinking you’re fine and then they say, no, wait a minute. It’s devastating.
Things are good here after 2 years and so you have every reason to be optimistic. The bit of good news is that they can do a genetic test now to determine the likelihood of recurrence. If its is small, then there’s no chemo. Good luck and take care of yourself.
Skpeticat
After my dad’s catastrophic head injury and a friend’s massive stroke, I’ve had much more secondhand experience with brain trauma than one wants or needs. The up-close experiences taught me more just enough for me to be dangerous, but what you say about her response is really quite encouraging and bodes well. JC, you might want to pick up a copy of Don’t Leave Me This Way, or You’ll Be Sorry When I Get Back on my Feet by Julia Fox Garrison, a woman from the town where I lived in Massachusetts who had a devastating stroke. Another friend had a massive stroke while in surgery to repair an aneurysm, and both have recovered amazingly well, as we all hope Holly will.
lurker dean
best wishes to you karen, I’m sure it’s a lot to process. as others have said it sounds like it was found early, which should be really helpful for treatment. we learned with a sick relative to try different pain meds because some work better for people than others, the right one can be a godsend. so be sure to be vocal about your reaction to the particular nausea meds they give you so they can find what works for you, and possibly check for some natural ones as suggested. best wishes to askew too, thats rough news.
gogol's wife
It’s great to have a doctor like that.
Still praying for Holly, and now for Karen too.
gogol's wife
@askew:
I’m sorry — thinking of you too.
skyweaver
@karen:
I thought I’d add my own story – my mom was diagnosed with breast cancer at age 65. She was treated and is now 81 and still teaches ESL classes every other day for the county and shows now sign of stopping. I wish you a similar success, we’re all rooting for you!
MomSense
@karen:
Karen, I will keep you in my thoughts and send healing energy your way.
Emma
@karen: Crap. I wish I’d been up later last night. It is a devastating diagnosis and I won’t lie to you and tell you it’s been a bed of roses. But it’s doable. Breast cancer is absolutely survivable and not only that, you can have a good quality of life while doing it. Hang in there.Go through the steps. Focus on your body’s own reactions to treatment and work to fix that while the doctors work on you.
And breathe. Remember to set aside time to take deep breaths. This is the sort of thing the phrase “takes your breath away” was really invented for. Keeping your own balance is essential.
Also, cry when you need to. Don’t be strong all the time.
skyweaver
The signs look positive for her, so I hope that continues. She’s glad she’s got you for a friend, which is the kind of thing I suspect you don’t like to hear much but I mean it because you are. I had the same thought you did about the doctor being very blunt – I love blunt people because it frickin’ saves time, dunnit.
Anyway, as close to prayer as I get, I’m thinking of Holly.
divF
Most of the time family members need to have explained to them what exactly is going on and what the prognosis is. Madame Dr. divF spends a significant fraction of her time in her professional life, as well as for our family / friends, expanding out very terse doctorspeak into terms that family members (and the patients themselves) can understand, and communicating the news, which can be anything from good to heartbreakingly awful (we had one of the latter a couple of months back).
BubbaDave
My mom was a teacher (because in 1964 in a Southern Baptist college in Florida when she said she wanted to be a doctor they explained that girls’ brains weren’t wired right for math and science) and later became a physician (because by 1978 she’d figured out they were full of bovine fecal matter) and she always said one of the advantages of her non-standard career path was that she’d gotten good at explaining things to people in a way they could understand. Bedside manner matters, if nothing else because you want the patient to understand WHY they have to take all these pills, every day, even if they’re feeling better — but those pills they can stop taking whenever they want…
BubbaDave
Oh, and she had a cerebral aneurysm that ruptured back in ’96 — emergency brain surgery, the works. She came out of it fine (although hers was forward enough that the optic nerve took some temporary damage and she was effectively blind for a week or two before her eyesight came back) and another 2 years ago that didn’t rupture that they were able to fix with a coil. Brain surgery is a big deal, but the state of medicine keeps advancing.
Jasmine Bleach
@karen:
Although nothing can every be absolutely certain, catching things this early is a great thing. I’ve had my mother and an aunt experience similar over the past handful of years, one HER2 positive and one not, and both are just fine 3-5 years later. No recurrence or anything negative.
Catching it early is key.
Wendy
My sister had to have endovascular surgeries on a carotid fistula and an aneurysm starting when she was 17 (fallout from a major car accident) and her doctor was Alejandro Berenstein (so if Holly’s doctor worked with or studied with him, she is in excellent hands). My father always told the story of how he once was talking to a group of people and he ushered everyone in front of him and said “Even God can’t see behind himself!” Gotta love surgeons.
This was back in ’94 or so, and Berenstein used to call my sister the Million Dollar Patient because she’d had about $1M worth of surgeries on her–thank the NYS teachers’ union for the excellent health insurance.
One time my sister came in for a surgery and the morning of the surgery, she decided she wasn’t going to have it because it didn’t feel like the right time to her. My little sister, about 18 at the time, stood up to Berenstein and refused to have the surgery. Cojones. 20 years later, my sister is now a nurse. :)
JoyfulA
@karen: I’m in south-central PA. If needed, we’ll come get Contessa, keep her until you’re able again, and then bring her back. And I’d be delighted to help out. (Yes, I’m familiar with cats in cars!)
So take that off your worry list. Just think about the next step to take care of yourself. You caught it early, there’s an unpleasant process to go through, and you’re almost guaranteed an excellent recovery.
JCT
@karen: As others have commented, the early catch and lack of extension is a big prognostic plus.
re: the nausea – the advances in anti-nausea Rx have been substantial, Zofran is a great drug. My husband was very worried about handling the nausea before his chemo for leukemia and was amazed at how minor it was . Even I was impressed – it was a different deal when I was a resident in the 90’s that is for sure.
Sending good thoughts!
And re: Holly’s blunt NS, the good ones are all like that. I used to refer to a famously dickish pediatric cardiac surgeon in NYC. Had to carefully warn folks about his manner, but he was a wizard with complex congenital disease.