Is anyone else an atheist with BC besides me?
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I received a PERMANENT disqualification from jury duty today. YAHOO!
Still waiting on results from Tuesday's PET scan. The doctor had an out of town emergency and she was just getting back in town this afternoon, but the nurse assured me I would know something today. Still. Waiting. I got the disc, and from what I can tell, it's still only in my neck, but it looks like it could be more widespread in my neck than I thought, so that's why I am thinking she may 86 the node removal surgery and currently shitting bricks. And have been for three days. And will continue to do until she calls.
Will update with news, hopefully soon.
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Lauren, It is horrible that you have to wait like this. I wish there was something I could say to make it easier for you. Just try to breathe.
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Here's hoping there's an easily-tolerated treatment that will help, Lauren.
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Thank you Ananda and Alice.
Still no news. It’s 8:00 so I’m guessing I won’t hear tonight. I already blew my “rah rah fight starts today fuck cancer” diet by stress eating Wendy’s. I was ASSURED I’d hear today so I wouldn’t have to go the weekend without results. I’m so upset. If I thought there was a chance she wouldn’t call I would have demanded my report 12 fucking hours ago.
I think I’m going to go to bed and have a good old fashioned pity party. Hopefully I’ll be able to put this out of my mind until Monday and have a decent weekend. So much for acceptance lol.
Have a great weekend everybody
Lauren
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Cry until you sleep.
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I’m not sure how well I held it together today with the huge diet meltdown, but I did avoid the pity party by watching the baseball game. (I LOVE baseball! I need to start a thread for next season) There will be plenty of time to feel sorry for myself. I’m the meantime, I need to accept that I likely won’t know until Monday so I need to get the hell over the broken promise and move on so I don’t waste any more of my numbered days.
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True, absolutely True
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Lauren glad you got the permanent disquaification from jury duty. Sorry you didn't get the report yet, it's so hard waiting. xx
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So....the judge giving Amber Guyger a bible and a brainwashing speech...wtf? I'm all for more compassion and pep talks from judges, but this was waaaaay over the line. If it was me, well, it would probably never be me, but if it was me and the judge said that, wouldn't I have to take it, say thank you, hug her and all that even though I think it's ridiculous, or be afraid of legal repercussions? Or bring even more media attention and public outrage to myself? So inappropriate. (Don't even get me started on the sentencing...)
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Good point.
Church...............................State
They're supposed to be separate, right??
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Interesting point Lauren. My immediate response was I'd just leave the bible on the bar. Then I got to thinking about possible repercussions from the judiciary. Hmmm.
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It will be interesting to see what comes of the lawsuit filed by the Freedom From Religion group in that case.
Lauren, I'm sure this weekend feels like it’s stretching out. So hard to wait for that kind of news.
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Separation of church and state is in serious jeopardy, SantaB.
Leave it on the bar, lol. Ballsy move-I like it.
Yes Wanderweg! It didn't occur to me to take legal action until I read about that. Being in the Bible Belt I just assumed that's what is accepted as normal, but it shouldn't be.
Yes the waiting is hard. I'm not dwelling necessarily but I'm unable to focus, so I'm not doing much of anything. It's hard to work when I can't focus so I have stopped trying until tomorrow. I have two games to listen to today so I'll be occupied tonight.
I don't know what to do tomorrow. Do I call and demand my records first thing? Do I wait for her to call? Do I drive 45 minutes to the imaging place to get them? Ugh. These are the things that make me crazy and exhausted.
Cancer is not good for over thinkers.
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Call first thing. And call the imaging place too - maybe they can email your report (summary of what images show). You have a legal right to them.
I abhor this waiting thing. I just ask direct questions now and talk to the MD at the imaging place so before I go I know what's up. It seems so infantilizing that a grownup can't know the clinical results of their situation unless the MD is folded into it...
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I agree with the infantilizing. I didn't know I could talk to the MD at the imaging center. I might have to try that too.
When I see her on the 14th, I need to explain what kind of person I am so we can get on the same page.
1) I'm a planner - "Go with the flow" is not how I operate, never has been. "Let's just be spontaneous!" is how all my nightmares start.
2) I'm a big girl.- I learned how to read a long time ago. I can read a report, I can even Google the words I don't understand. I need the results sent to me immediately, and then she can call me at her earliest convenience. No more waiting days for results, no more special office visits just for results. I've got better things to do with my time. If I have questions, I'll ask when she calls or call for an appointment.
3) I'm highly independent. - I don't need anyone to sit with me and hold my hand (yet). I can handle the results whatever they may be. I know what Stage IV means, I know where I'm headed, and I'm going to be a part of the treatment that keeps me from that point for as long as possible. Take care of the patients who need the hand holding and extra support - for now, I'm fine with learning on my own.
4) I'm educating myself, so get used to a lot of questions. - Not that I don't trust her, but I need to be a part of my treatment, so I will be doing research on my own to make sure I understand what is happening. No blind following of doctor's orders for me. If that's a problem, I need to find another doctor.
5) If you say you're praying for me, that's my sign to exit. (I won't say that but I'll be thinking it.)
I will be slightly more tactful that that, but I need to get my point across, because this waiting fuckery is way, way too stressful and a waste of my numbered days.
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I'd definitely call early, too. Sometimes things fall through the cracks. I just assumed my oncotype had been sent off and waited and waited.. turns out it somehow hadn't. No one seemed to know why, but a second request finally got sent when my oncologist expressed surprise that I wasn't getting that done. Good thing it was finally sent, since my score was 38.
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Lauren, I am continually appalled at how many people are treated by the medical community. Women on this thread have described how they had surgery, were released and had to go back for more surgery because days later pathology reported that margins weren't clear. Women like you wait weeks for results. The wait times for results are inexcusable.
When I was diagnosed I was eligible to go to a VA hospital for all my care. This was my timeline. 1) I found a lump and called the VA for a mammogram appointment. I was seen the following week. 2) I had my mammogram which was immediately read by a radiologist and he called me in for a ultrasound within minutes. He didn't like what he saw and he did a biopsy then and there. 3) I waited three days for the results and the same radiologist called me at home to tell me I had cancer and was scheduled for surgery in two weeks. 4) I had surgery and while I was still under, my tumor was sent to the lab to determine if I had clear margins and the lymph nodes were examined at the same time. If more tissue had needed to be removed, it would have been done while I was still under. 5) My surgeon saw me the following day, she explained my pathology finding and I was set up for radiation to start as soon as my incision healed. From finding my lump to being released after surgery, less than a month.
Not only should you discuss everything you mention in your post. You should raise holy hell about the lack of empathy and compassion of that medical center.
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Oh Wanderweg, how frustrating!! Mistakes happen, of course, but still....it's cancer, not a pizza delivery order. I'm glad you got it taken care of.
Ananda, that sounds like the service I got the first go around. Mammo to chemo in 3 weeks flat. Amazing. So I am wildly impatient with 8 weeks for node removal and have to breathe deep every time I think of it.
I just read on a Facebook group that a woman who was "disappointed' in her treatment was dropped as a patient from her doctor. It's the doctor's right just like it is ours to drop each other, but she wasn't even getting care in between doctors. At least give her a 30-day notice or something to find another oncologist. I couldn't believe it. Again, this is CANCER we're talking about, not finding a new hair stylist.
I don't want to raise too much hell. Life happens to everyone, even doctors. I mean, I have no idea what the out of town emergency was - her mother could have died for all I know. Maybe she didn't make it into the office like they thought she would. I don't know what happened. I do know that I will call tomorrow morning and as gently as I can insist on my report. If her nurse says no, then I'll get less gentle about it.
I'm practicing my speech and it sounds pretty good.
Lauren
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Did your doctor not have a back up? You might want to ask about that. Perhaps the problem is with the administrative staff not coordinating with the back up doctor.
The VA give wonderful care but in some hospitals the administrative staff are incompetent.
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I didn’t think about a back up. I should ask when I see her the 14th
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The doctor finally called:
1) Multiple active nodes in the right neck. (these are the ones we knew about)
2) Paraphyrageal (sp?) node near esophogus - inoperable
3) Indeterminate areas in hilum (near lung) and T12 bone - little bit of uptake, but indeterminate.
With the node in the esophogus, she is recommending no surgery and getting started on the Kisqali as soon as possible. If I can get a second opinion with someone who recommends the lymph node removal, then I can have the surgery but would have to switch doctors completely.
I have decided to start the Kisqali, and see what happens at the 3-month PET scan. I'm not 100% convinced this is the right move, because two of the three reasons she is recommending against the surgery are indeterminate. If they are not cancerous, then I'm putting off taking out a whole mess of cancer for just one inoperable node. Is going without surgery the most aggressive way to go about this? I suppose I can look for a second opinion once I'm on a treatment and need a second line.
What do you think of my decision, BCO'ers? The women on this board can be my second opinion.
Not the news I was hoping for, but all in all it could have been worse.
Off to watch baseball and eat myself into oblivion.
Lauren
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Personally, I think starting on the chemo first is a good idea. Then look for a 2nd opinion. No time will have been wasted if the 2nd opinion agrees with the first. If 2nd doesn't agree, then you can make a decision.
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And yu have the node to watch to track the response to chemo
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Thanks guys. I think it was the right decision. I really want these damn things out but it’s not to be just yet. Sure hope these meds work.
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Lauren, I hate like hell to hear that. I'd probably start chemo right away and then seek a second opinion, too. Do you like that MO? Did she seem responsive to your concerns about the long wait? There's some research that shows that people heal better when they trust their doctor, so if that's not the case, that's even more reason to get a second opinion. I've been thinking about you today and just couldn't get to a computer until now. Please keep us posted.
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Thanks Wanderweg for thinking of me.
I like her in that she is no nonsense and her office is usually very quick service. To be fair, there was a lot of information to absorb so she might have been right to keep me waiting (but does not change the fact they are my records and should have been sent regardless.) I agree with the falslodex/Kisqali tx, and she is cautious in that she takes tumor marker tests and won’t hesitate to scan.
The one thing she said that bothered me is when I said “so I have to decide whether or not to have surgery?” And she said “No, the surgeon and I make that decision. We can’t have patients dictating their treatment.” She said something like this before too so she is definitely not flexible. My choice today was to start treatment with her or get a second opinion (which she was cool with and wanted to be kept in the loop) and try to find a doctor to approve the surgery because she wasn’t going to.
She did say we could have a node removal surgery discussion down the road if I have some stubborn ones and the non operable ones disappear.
At this point it seems overwhelming to change so I think I’ll wait for all the info to come in like the gene testing and 3-month scans and then check out another doctor.
What a long week. I have an EKG tomorrow ahead of Kisqali and then I have to try to get some work done (though I probably won’t) Cancer is a pain in the balls
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Starting with chemo does seem like a sensible option. The fact she is no nonsense would appeal to me too, I prefer that to a wishy washy doctor who doesn't give me a clear path. My radiation oncologist I initially thought seemed very inflexible, but I've realised now she was only inflexible about the important things, and is now quite flexible in regards to things which are not as crucial.
Yes Cancer is a pain in the balls!0 -
Well that's good to hear, Pooh, that my impression could prove to be wrong. I have a hard time letting go of my expectations. Like I expected to hear Friday and didn't, expected to have the surgery and won't, expected for it not to have spread, and it did...I think I might have to figure that out or I'll waste a lot of time and energy unnecessarily.
So an interesting thought just occurred to me...
I am not willing to believe in god unless it is scientifically proven, which of course it never will be. But I'm tempted to believe that diet and exercise and supplements and juicing and all the other alternative methods will prolong my life despite it not being scientifically proven. There is anecdotal evidence (similar to the bible) but not scientific. Does this make me a hypocrite? Does this make me a 'do it just in case' type of person? Am I in my own little foxhole in which there are no athiests?
I could argue that losing weight and being more healthy in general will make my side effects easier to handle - to me that makes logical sense even though there probably isn't a scientific study to prove it. Not make them better per se, but make them easier to handle if I'm not carrying around 60 extra pounds and putting undue pressure on my joints and lungs.
Or maybe the alternative/complementary methods haven't been scientifically proven yet because no one has ever tried and some really do work.
My plan is to lose weight and eat healthier because 1) it will be better overall for my already overtaxed body and 2) I'm a heifer and I'm tired of it and 3) fat and bald is not a good look on me. I'm not sure I'm on board with the dog dewormer/COC train just yet, although I totally and genuinely understand those who are and I can definitely see me doing it in the future, logic be damned.
Anyway, just a thought I had while hanging up clothes.
Would love to hear your thoughts. Lauren
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There is a ton of scientific proof that diet profoundly affects health!
Yes, there are clean eaters who get sick, and also crappy eaters who don't get sick-- but statistically, the processed western diet is very linked to poorer health outcomes. And cancer has many features of metabolic disease, a la diabetes. Obviously some clean eaters have genetic mutations like BRCA which undermine their health, and some of them grew up with chemical exposures (I am a DES daughter). But in general, eating healthy foods is much better for you. It's annoying how people think one yogic vegetarian they know getting cancer disproves the benefits of diet and exercise... Show me the stats on 500 vegan yogis vs 500 cake eating couch potatoes, and we all know which group will be less ill.
I changed my diet upon being diagnosed -- and I feel wonderful. I am down 30 lbs. I east almost zero processed foods and largely organic/vegan. I am happier pulling in my own direction, and not against myself. If I recur, I won't have any regret for not doing the things I *could* do to help myself.
I had a consult with an integrative oncologist and am following his evidence based plan for best eating practices. If you are interested he has a book "Life Over Cancer."
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Oh I absolutely agree that a proper diet will contribute to overall health, of course, that is common sense. And also changing my diet will help me feel like I am doing all I can. 100% agreed.
but there is as far as I know no scientific evidence that a particular diet prolongs life at stage four or has any effect on the cancer itself. Like I said, my general health will improve and make treatment more tolerable.My point was as an atheist, is it hypocritical to put my faith into a process that has not been scientifically proven. Like people put faith in the Bible or god ‘just in case’ it’s true. Not that I won’t try anything when traditional treatment stops working.
I did buy the book Life Over Cancer last week (per your recommendation in another thread) but after the week I’ve had, I am taking a few days off from thinking about it as much as I can. Maybe after baseball is over I’ll look at it.
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