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Gaaark (41)
Gaaark
(email not shown publicly)
Linux user. Tries to keep feeding the brain with stuff. Husband and father of a young lady and a younger son who has autism/is autistic... that nut didn't fall far from this nut-tree, I'll tell ya: he gets it honestly. Now if only he'd sleep..............
I believe that God gave us the science, curiousity and intelligence to one day conclusively prove that God does not exist.
(email not shown publicly)
Linux user. Tries to keep feeding the brain with stuff. Husband and father of a young lady and a younger son who has autism/is autistic... that nut didn't fall far from this nut-tree, I'll tell ya: he gets it honestly. Now if only he'd sleep..............
I believe that God gave us the science, curiousity and intelligence to one day conclusively prove that God does not exist.
The Fine Print: The following are owned by whoever posted them. We are not responsible for them in any way.
Friday May 17, 19
05:07 PM
My wife's white cell count has stopped doubling (she thought it was going to be at 60 from 30, but it's only at 45.... So, good news in a way...the next test in 3 months should show better? the progress.
Here's hoping it levels out and just becomes chronic and steady.
Fingers crossed.
The Fine Print: The following comments are owned by whoever posted them. We are not responsible for them in any way.
(1)
(1)
Agnes' Law:
Almost everything in life is easier to get into than out of.
(Score: 2) by Runaway1956 on Friday May 17 2019, @05:52PM (6 children)
invites abuse. I'll restrain myself. It's difficult, but I can do it, I hope . . .
Now you've got me scrolling through your journal. I don't see the "Wife has horrible disease X" entry. Well, I hope she gets - chronic and steady?
Abortion is the number one killed of children in the United States.
(Score: 5, Funny) by realDonaldTrump on Friday May 17 2019, @10:04PM (1 child)
That's OK, we're not all Speed Readers. I'll recap. November 5, 2017, she had a type of Cancer called Linux. For which Gaaark gave her the Antivirus. February 27, 2018, she went to the Hospital and got the surgery for that one. August 26, 2018, Gaaark was thinking about replacing her -- if she died -- with a Robot. And now, great test results for her. As always, she is in our thoughts & prayers!!!!
(Score: 2) by Gaaark on Saturday May 18 2019, @02:59AM
L.O.L!
:)
:)
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 0) by Anonymous Coward on Friday May 17 2019, @11:47PM
You can't help yourself, can you? Sad.
(Score: 2) by Gaaark on Saturday May 18 2019, @03:11AM (2 children)
Leukemia.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 2) by Runaway1956 on Saturday May 18 2019, @03:55PM
Ouch.
Abortion is the number one killed of children in the United States.
(Score: 0) by Anonymous Coward on Thursday May 23 2019, @08:21PM
And I though I had it rough with the agressive invasive breast cancer that attacked my wife's. It is great not to be an American when cancer struck! Is it the same out of Québec? I wish you as much luck as you can get...
(Score: 0) by Anonymous Coward on Friday May 17 2019, @07:53PM (2 children)
The answer is yes. Hopefully she remains stable, but that ? was entirely unnecessary. Were you looking for someone to disagree or provide definitive answers?
(Score: 2) by Gaaark on Saturday May 18 2019, @03:09AM (1 child)
Definitive answers would be nice!
But the ? was for 'is better the proper word'.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 0) by Anonymous Coward on Sunday May 19 2019, @08:39PM
The technical way to do that is to put it in parentheses with possible explanation. For example, "They liked the game because of its enrapturing(?) gameplay and colorful palate(sp?)."
(Score: 2) by Snow on Friday May 17 2019, @09:30PM (1 child)
Take that woman out for a dinner date(if you can line up a babysitter)!
(Score: 3, Interesting) by Gaaark on Saturday May 18 2019, @03:16AM
We take our son everywhere with u usually. Often he is the best behaved person in the room, actually. My wife loves him to pieces, I think a lot of that has to do with how MUCH we have invested in him doing better than he would have.
We went out for Mother's Day, that's what she really cared about.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 1, Interesting) by Anonymous Coward on Friday May 17 2019, @11:52PM (1 child)
Medical issues can be so emotionally draining. Something inside your (or in this case, your wife's) body goes awry and it quickly grows roots in your psyche. I speak from experience.
I hope the improvement continues and that whatever her ailment is she experiences a remission. And that you both can enjoy the physical & psychological relief that comes with it.
(Score: 3, Interesting) by Gaaark on Saturday May 18 2019, @03:21AM
Yeah...her leukemia has been a mental drain and strain already. If we didn't actually love each other, this could easily be something that could tear a marriage apart.
But we strive to survive: outwit, out-last, out-play, lol.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 1) by Sulla on Saturday May 18 2019, @01:56PM (7 children)
What does all that mean? What is a normal white cell count, what is too high. Does less white cells means that the body is not fighting an invader so is getting better (like coming down from a fever)?
Ceterum censeo Sinae esse delendam
(Score: 3, Informative) by Gaaark on Saturday May 18 2019, @08:27PM (6 children)
I can't answer some of those questions (not a doctor), but the body produces white cells to fight infection. Infection gone? The body signals the excess/deformed cells to die (again, not a doctor).
Her cells don't die off: they just keep coming. They've been doubling, which is NOT GOOD. They've now stopped doubling (at least for a bit) which was GOOD NEWS.
If they've levelled off at her next test, that would, I assume, be GREAT!
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 1) by Sulla on Saturday May 18 2019, @08:44PM (5 children)
Thanks for the details
+1 for the good news
Ceterum censeo Sinae esse delendam
(Score: 1, Informative) by Anonymous Coward on Sunday May 19 2019, @09:05PM (4 children)
Depends on the type of leukemia (there are four main types) they all have different limits of what is considered good and bad and for rate of change. My guess is that the doctors aren't sure if she has acute or chronic yet, based on the "doubling" metric he used. Normal levels depend on all sorts of things, including age, sex, general health, etc., but are in the general range of 3.5-10 Based on what I know, my estimate is that the line for "raised eyebrows" for someone in her state of health (minus the cancer) and demographic is around 8.5, or 11 if they are known to have an infection at the time of testing. The real question is what the differential and smear looks like.
(Score: 2) by Gaaark on Monday May 20 2019, @04:23AM (3 children)
Unfortunately I haven't been able to attend all the appointments because of work or staying home to look after our son while she goes, so I get a lot of my info from her as "the doctor said something about...."
She's happy it didn't double, but all I know is that he's still concerned, even though it 'seems' to be slowing, so ......................and she's just plain scared.
Smear: that rings a bell... something about some of her cells being odd shaped...? She's asleep right now.
Differential....no clue. Maybe we heard a different phrase?
Reality check: i think I don't want to know too much because I really want it all to be not true and to just stop.
Not knowing the future really sucks, and not being able to do anything about it but try to be there and listen.
Fuuuuuuuuuuuuuuuucccc...... Have more questions to ask.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 2, Interesting) by Anonymous Coward on Monday May 20 2019, @06:28AM (1 child)
If leukemia (and many cancers) aren't contained in their growth, then the cell count increases. Now slowing is a good thing, but there are different constraints as to why it stops. If the count levels off, then that is a great sign that the "acute" phase is over and it is now chronic. You can live with chronic leukemia for decades and decades. It runs in my spouse's family. There is literally not a person in her family over the age of 45 without some form of diagnosed leukemia. Some have literally lived into their 90s without problem (one would have made 100, if it wasn't for a completely different injury). Now, everyone is different but cancers aren't the death sentence they used to be. The fact that you are in watchful-waiting, rather than having active intervention is a good sign, a very good sign.
A smear is where the hematopathologist looks at a sample of your blood. They basically figure out what is wrong with your organ systems based on the damage they see in the cells. They can also give powerful information on treatment options and are a key part of the care team. (Not to be biased, since I know a few, but pathologists in general are unsung heroes in the medical field since they aren't on the "front lines.)
A differential is where they count the relative proportion of blood cells, which can be used to get their exact count. This lets you know if you are immuno-compromised (which is unlikely given the WBC you gave and the WW by the doctor) and all sort of other data in the hands of a skilled oncologist and care team.
But if you just remember three things from this post, let them be:
(Score: 0) by Anonymous Coward on Thursday May 23 2019, @08:25PM
Not gaark but thanks anyway I needed that
(Score: 1, Insightful) by Anonymous Coward on Monday May 20 2019, @08:03AM
You both need to know what is going on and her memory may not be accurate due to the stress and impact of hearing it personally. She needs to call the office with a clear head and ask them to mark her file for the Canadian equivalent of a HIPPO authorization. And, they should also mark it to send home a copy of the key cancer information on paper (which I'm somewhat flabbergasted that they aren't!). That way you can call and talk to her doctor directly with any concerns or questions you have AND you have a paper copy so that way you two can absorb, discuss and process the information in the safe environment of your home together. And, it will reduce the confusion and helpless feeling on both sides as you will have the same information, empowerment, and support available as a true team.
(Score: 2) by RS3 on Sunday May 19 2019, @05:14AM (11 children)
Gaaark I'm sad to hear your wife and you are going through this. Hopefully you have helpful supportive family and friends.
Leukemia is complex, almost a set of diseases. The disease and symptoms manifest in many different ways depending on the myriad factors in the patient's health, body chemistry, etc. I hope you're getting top quality care? I assume she's had conventional chemo and radiation? Have you looked into the targeted therapies where they look at genetic markers? Biologics?? Stem cell transplant therapy???
Keytruda (pembrolizumab) might really help her. For some people / cancers, it's showing the best improvement and outcomes.
Neulasta can help, but I'm not sure if it would be right for her though- it can cause white cell count to go Hyperleukocytosis; she'd have to be closely monitored, and it might not be worth the risk, but I know people who have survived cancer and Neulast was part of the treatment program.
I'm sure you've seen it, but https://www.mayoclinic.org/diseases-conditions/leukemia/diagnosis-treatment/drc-20374378 [mayoclinic.org]
And https://www.neupogenhcp.com/acute-myeloid-leukemia/ [neupogenhcp.com]
Not sure where you are in the world, but maybe you've seen this: https://health.usnews.com/best-hospitals/rankings/cancer [usnews.com]
And: https://www.topmastersinhealthcare.com/30-most-technologically-advanced-cancer-centers-in-the-world/ [topmastersinhealthcare.com]
(Score: 2) by Gaaark on Sunday May 19 2019, @12:35PM (10 children)
She's still in the 'testing/discovery' phase: if her white cell count levels out, she may just go 'chronic' and stay that way for the rest of her life. Fingers crossed.
We're still waiting to see what her blood is doing, i guess is how I'd put it.
Good to see that Canada has one of the top centers in St. Mary's. We have no family in Toronto, though......
Yeah: with my son being moderate to severely autistic, this is one more thing breaking the camel. Just hoping she goes chronic and can stop worrying (if that's possible).
Sigh: the shit you don't need......
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 2) by RS3 on Monday May 20 2019, @03:50AM (2 children)
Yeah, you just don't know what can pop up in life. I visited a car show today and one guy I chatted with said he lost his wife a year ago, which is very sad. He said she had a disease, different from your wife, but something that normally gets identified and you can live many years with treatment, if not cured. Well, she had been having vague symptoms, this and that, bottom line- they had never done enough tests to find the actual disease, and when she got sick enough to go to an ER, they identified the disease and she passed away 2 days later. Her white cell count was over 600,000 - 4,500 to 11,000 being normal range.
Many hospitals have special programs for housing for family of people who need treatment. It's not always well advertised- you might want to call St. Mary's, ask for a "nurse navigator" or "care / treatment coordinator" and ask about local family housing programs. They might even know people who would let you stay for free. And they may be willing to get her started on one of the treatments and continue it in your home area. No harm in calling and asking.
I'm in USA. One of those surveys I linked put University of Pennsylvania Hospital at the top for cancer care. I'm not sure how Canada / USA health payments work...
(Score: 1, Informative) by Anonymous Coward on Monday May 20 2019, @06:47AM (1 child)
Good point about the family housing programs. One thing to note, even if the hospital doesn't have a housing program or hotel room block, for well-known and common diseases the non-profit for them might know of some. For example, when my grandmother got treatment for her cancer, the hospital told her their family housing was full. But she and my mother stayed in this nice lady's guest house (which was a mansion in its own right) with another two families, also getting care at the hospital, which was within walking distance. They found her by calling the state affiliate of the ACS, and it turns out the state affiliate had a network of people that volunteer their homes to people undergoing cancer treatments.
(Score: 2) by RS3 on Monday May 20 2019, @05:32PM
Yes, awesome, thank you. I have heard of ACS helping with that but didn't think of it when I wrote the previous comment. And do a web search for other such programs.
For example: https://www.cancersupportcommunity.org/free-housing-patients-traveling-cancer-treatment [cancersupportcommunity.org]
(Score: 2) by RS3 on Monday May 20 2019, @04:30AM (6 children)
Has she had CT and/or PET scan?
(Score: 2) by Gaaark on Monday May 20 2019, @06:30PM (5 children)
No chemo or PET: she's still in the early stages, I guess. That's why I'm viewing her non-doubling as good news.
But her doctor is still concerned, which is worrying.
--- Please remind me if I haven't been civil to you: I'm channeling MDC. ---Gaaark 2.0 ---
(Score: 2) by RS3 on Monday May 20 2019, @08:11PM (4 children)
Well, at the risk of (all-too-typical-engineer) bluntness, I would be worried, but I usually try to direct worry into a sense of urgency and action. You Canadians are too nice! Not the time to be nice to the disease. Please be proactive against this thing. I just sent my dad on his way to a new urologist appt., armed with a list of questions I got mostly from Mayo. Not offensive, just simple questions about some treatment options. Sadly my mom passed away last December, but was in and out of hospitals, doctors, etc., and I was involved some of it (long story). I was amazed at how much the doctors responded to my questions, thoughts, etc. I wish I had gone to med. school, BTW. Anyway, I'm always very conscious of doctors' egos, personal pride, etc., so I'm very careful to play very naive and ask simple questions, timed carefully, etc., but please don't let this go too long. The earlier the treatment is started, the better the outcomes. Low-dose chemo might be the best thing for her. There are oral ones with almost no side-effect. As the AC mentioned above, there are many types of leukemia, and there's no reason to wait and see. Sorry- I'm chomping at the bit here. I know a top top top -many really - oncologist who gets top score ratings in the whole metropolitan area he's in (Philly) where there are many top top hospitals (all competing with University of Penn.).
A PET scan will show where the bone problem is- where the leukemia is being produced (and spreading). Focused ("stereotatic") radiation will stop the problem. Then you'd wait and see if it has spread, or if it resolves (which it very well could).
(Score: 0) by Anonymous Coward on Monday May 20 2019, @11:15PM (3 children)
I think you are worrying them unnecessarily. It can be counter-intuitive, especially for an engineer that is used to taking action and fixing things, but there is a simple truth: Sometimes the best course of action is watchful waiting. This includes certain adult-onset leukemia patients. In most cases, leukemia self-limits, and that is probably what the doctor is looking for and probably sees with the leveling off of the WBC count. I know people who have lived with counts around 100 for years, with no ill effects other than taking a day longer to recover from colds and flu. Once it levels off, or doesn't, the doctor will have a better idea of what they are dealing with and come up with a proper treatment plan. To be frank, using the wrong treatment plan and shooting from the hip can just make the problem worse.
You are probably feeding off of Gaaark's sense of powerlessness, which is understandable. This is probably because he has been cut out of the discussions with the doctor and wife. Other than being more involved in general (hence my suggestions in another comment), what he really needs is a peek at the doctor's decision tree for the watchful waiting. This will provide the knowledge that the doctor is listening to the patient and other members of the care team, and considering all options, rather than just kicking the can down the road.
I'd also highly recommend that Gaaark and his wife get couples counseling with someone that specializes in chronic medical conditions. They can make a large difference in dealing with diagnoses like this. I can't speak for Canada, but they are often covered by insurance in the U.S. if you get the doctor to make the referral.
(Score: 2) by RS3 on Tuesday May 21 2019, @01:47AM (2 children)
I had a lot to say, but decided not to post it. I do appreciate your thoughts, you're making a lot of good points, and I believe you're trying to help, but I wish you'd log in. That you post AC strongly discredits you. Can't tell one AC from another. And you're trying to be too personal and intricate, but it's a conflict because AC is by definition impersonal.
Please don't psychoanalyze me. You don't know me, and you can only know a very very little about me here on SN. I'm far far more than an engineer. You're much too sure of yourself, when you have very little actual facts. I don't psychoanalyze people, and I especially would not write my conjectures here. I have no sense that Gaaark feels helpless. He can speak for himself.
I don't mean to worry Gaaark, and if I do hopefully he'll post something and we'll discuss it directly. Gaaark himself wrote: "But her doctor is still concerned, which is worrying." So since he implied he's already worrying, I'm hoping to inspire him (them) to be proactive. I think waiting is gambling. I've found doctors have become very passive. Early definitive diagnosis will lead to the correct treatment.
OhMyGosh, does the AMA know that? Better go tell them!
Wisecracks aside, you're completely misinterpreting what I've written, and you may be the AC who does that a lot here, or maybe there are many of you. What I'm advocating and suggesting is correct testing, definitive diagnosis, and go from there. Waiting is a gamble. It's time for proaction. ("proactive" is a recently coined word, so I'm coining one.)
Again, I had much more to say, including many many direct examples, but it's not worth it.
(Score: 0) by Anonymous Coward on Tuesday May 21 2019, @03:59AM (1 child)
I apologize if I offended you, as that wasn't my intent. It was also not my intent to psychoanalyze you either. Nor minimize you as a person or professionally by echoing your self-reference of being an engineer or hitting too close to home.
I am also not sure of myself either. The only one with any medical knowledge and first-hand knowledge of what is going on with OP's wife is their doctor. I can only state what I know from my experience and echo what people say. When someone describes themselves as being subject to "drain and strain" or describes themselves as feeling impotent, I take them at their word; just like I did with you when you said you were an engineer, "direct worry into a sense of urgency and action," and recommended a specific diagnostic and treatment plan.
I think we all have the best interests at heart, but having numerous family members going through cancers (including leukemia) of various stages, I've seen first hand what unprovoked stress can be generated by second-guessing the experts. Watchful waiting is often the proper treatment to many conditions, including cancers, as long as it is done according to a decision tree in a treatment plan. This is well-known because the side effects of treating cancers can be worse than the cancer. In addition, we have no idea what the doctor is even thinking, as we are relying on what we were told is the memory of what they were told by someone based on what they remember they were told by someone else. They could very well have what you imply is lacking. I'm just trying to say that they are the experts with the first-hand knowledge and if you don't trust them, why the hell are you seeing them anyway?
Regardless, I am going to attempt to disengage from this conversation, as it is apparent that we are both feeling attacked, despite the lack of intent to do so, and it seems to no longer be productive for anyone.
(Score: 2) by RS3 on Tuesday May 21 2019, @06:49AM
Thank you for your very kind words. You did not offend me. I'm an adult and if you offended me, I'd tell you. I'm sorry if you felt attacked- certainly not my intent. I've never had good verbal skills and am misinterpreted all the time.
Much to write and I started an attempt but getting too tired. I'll write more in a day or so. Please get a login! That way I won't confuse you with the AC who has harshly directly attacked me several times here. And it always includes him making statements based on his conjectures which are based on strange misinterpretations, mental short-circuits (connecting disparate things), psychoanalyzing me, on and on, rather than trading facts and ideas, and a discussion thereof.
:)
(really I just need to stop responding to ACs..., as many others do not.)
(Score: 2, Informative) by Rupert Pupnick on Tuesday May 21 2019, @12:26PM
Best wishes for a positive outcome for your wife. As someone treated and fully recovered from the same family of diseases, I can tell you there’s plenty of hope.
Some advice: don’t look to online sources to try and predict outcomes. The subject is WAY too complicated for anyone without training (even for the first line caregivers who work directly for oncologists), and the information is frequently out of date because advances are being made so rapidly. Because of this, self-directed online research will like result in needless and unhelpful pessimism.
Have you seen a hematologist? Have they tested and classified the mutation? They were able to classify my illness down to two levels of hierarchy within CLL, and their prediction of the development timeline was pretty much on the money.
Last piece of advice: Make sure your wife complains about any new symptoms. Again, don’t look stuff up, just report any unusual symptoms to your doctor, even if they seem unrelated to your wife’s condition.
Good luck!