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DFW

(54,426 posts)
Fri Oct 11, 2019, 02:48 AM Oct 2019

Sometimes fate just decides to kick you when you're down (you never know what you got til it's gone)

A friend of ours is a doctor. I have known him since December 1974, and my wife longer than that.

This spring, he was having an operation when the surgeons noticed something wrong. He was having a huge stroke, and was paralyzed and couldn't speak. He went from being a dedicated doctor one day (gave weeks of his time per year to Doctors Without Borders in Africa) to a virtual vegetable. He was still fully cognizant, but unable to move or express himself. He has regained some speaking ability and is in a rehab facility. No one knows if he'll ever walk again.

His son, now 41, took care of him almost full time until he entered rehab. The son was just diagnosed with a glioblastoma, the fatal brain cancer that felled Ted Kennedy and John McCain (and a cousin of mine, also aged 41 when he died). He had a minor epileptic seizure over a year ago, but his doctor said it was nothing, just fatigue. Umm, no, it wasn't. When he recently had a violent seizure right in the doctor's office, she changed her tune and called an ambulance. His tumor is now the size of a tennis ball, and he will try to have it removed surgically so he can function for a while with medication. But barring some kind of medical breakthrough, the son is looking at a very limited future.

It puts lots of things that bother us into perspective.

23 replies = new reply since forum marked as read
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Sometimes fate just decides to kick you when you're down (you never know what you got til it's gone) (Original Post) DFW Oct 2019 OP
Oh, dear. PoindexterOglethorpe Oct 2019 #1
Appreciated, thanks DFW Oct 2019 #10
Sheesh. I am so sorry. Phoenix61 Oct 2019 #2
It's better not to imagine that DFW Oct 2019 #12
My heart goes out to you and in sympathy to your Duppers Oct 2019 #3
It's very sobering to see friends' lives upended like that in an instant DFW Oct 2019 #11
I'm very sorry to hear that. I studied brain tumors recently on behalf a friend. NNadir Oct 2019 #4
I have them in our family, too DFW Oct 2019 #9
Yesterday I attended a lecture where I learned... NNadir Oct 2019 #19
If I don't get back to you on this DFW Oct 2019 #20
Will do. n/t. NNadir Oct 2019 #21
I don't know you negoldie Oct 2019 #5
My wife and I have the same kind of genetic minefield DFW Oct 2019 #7
Suffering. Newest Reality Oct 2019 #6
I don't thnk his expectations can be called delusional. DFW Oct 2019 #8
I am not using the term in that way... Newest Reality Oct 2019 #13
To qualify it... Newest Reality Oct 2019 #14
Out of the blue. like a bolt of lightning. You never know. So sorry for your friend and family, and Fla Dem Oct 2019 #15
If they could be done cheaply, along with comptetent evaluation DFW Oct 2019 #18
About a year ago NPR had a story about survivors of a vaccine given to people with in2herbs Oct 2019 #16
We'll pass it on. DFW Oct 2019 #17
.. Demovictory9 Oct 2019 #22
What a sad situation. I'm so sorry for your friends. The Velveteen Ocelot Oct 2019 #23

PoindexterOglethorpe

(25,873 posts)
1. Oh, dear.
Fri Oct 11, 2019, 03:53 AM
Oct 2019

I don't know what to say other than I hope this story has a somewhat happy ending. Even though I know that's not likely.

Just trying to express friendship and solidarity here.

DFW

(54,426 posts)
10. Appreciated, thanks
Fri Oct 11, 2019, 09:46 AM
Oct 2019

Obviously the odds are against them. But until it's over, it just isn't.

Remember, my wife was that one woman in 10,000 that survived the rare form of cancer that she had 3 years ago. One has no choice other than to hope to win the same lottery.

DFW

(54,426 posts)
12. It's better not to imagine that
Fri Oct 11, 2019, 09:53 AM
Oct 2019

I've gone through it twice with my wife. She beat it both times. I probably won't be so lucky. I hope our girls are sensible about getting regular check-ups, considering their genetic burden. Even when logic dictates to prepare for the worst, human nature keeps us clinging to that small hope that things will work out. It's just in our nature, and sometimes--like my wife--you DO luck out. So why not hope for it? There's always time to contemplate the worst.

DFW

(54,426 posts)
11. It's very sobering to see friends' lives upended like that in an instant
Fri Oct 11, 2019, 09:48 AM
Oct 2019

It is also frustrating to know there is nothing we can do to help, that the best care is still no cure.

NNadir

(33,538 posts)
4. I'm very sorry to hear that. I studied brain tumors recently on behalf a friend.
Fri Oct 11, 2019, 05:33 AM
Oct 2019

It was just a lot of literature searches.

My mother died from one many years ago. So I have direct experience of them as a family member.

I had hoped there would be better news when my friend's niece contracted one, but unfortunately, the success has been limited. Her niece passed.

I wish I could say something comforting, but I'm at a loss for words.

DFW

(54,426 posts)
9. I have them in our family, too
Fri Oct 11, 2019, 09:43 AM
Oct 2019

My aunt died of one around age 60, and her youngest son, my cousin, also at age 41.

One can only wish for good time as long as we can have it, and a peaceful passing when time's up.

NNadir

(33,538 posts)
19. Yesterday I attended a lecture where I learned...
Fri Oct 11, 2019, 04:25 PM
Oct 2019

...of a new approach to certain cancers, a form of genetic based personalized medicine relying on specifically engineered cancer vaccines based on "neoantigens."

Although I have seen many types of impressive technologies fail, this one struck me as interesting. Tumor biopsy samples must be available. It has has a successful phase I clinical trial in gliabastoma, published in Nature.

If you think this of interest, PM me and I'll share more information.

It's the first I heard of this technology but from the scientific talk I heard, it seems quite feasible. It is an immunological derived mechanism if action.

DFW

(54,426 posts)
20. If I don't get back to you on this
Fri Oct 11, 2019, 05:16 PM
Oct 2019

Please remind me on Sunday. I am in Berlin for a working weekend.

Thanks!

negoldie

(198 posts)
5. I don't know you
Fri Oct 11, 2019, 05:59 AM
Oct 2019

but I have a story to tell also. In 2015, my brother, both my sisters (one with gleoplastoma, although she is holding on) and myself were all diagnosed with one form of cancer or another. It's in our genes. Both parents died of cancer. I have been living with Mantle Cell Lymphoma for four years.
My wife and I were both diagnosed with lung cancer just three weeks ago, within a couple of days of each other. She has stage 4 small cell lung cancer. Very aggressive spreads to other organs quickly. She asks for prayers.
On top of my MCL (which is rare, chronic and unpredictable) I have stage two non small cell lung cancer. We are into our second week (of seven weeks) of radiation. Her third chemo treatment was yesterday, she will have three treatments for chemo very three weeks, plus radiation 5 days a week. I have one treatment once per week, plus 5 days of radiation. The closest place for radiation is 65 miles round trip.
As you say, it certainly puts a lot of things in perspective. Life, happiness, love for your fellow human beings....I post my GFM page here with some trepidation. But my wife is in real need right now. It will probably be taken down but when you are so poor you have to put your name out there....well we are in real need.
https://www.gofundme.com/f/y4d8hs

DFW

(54,426 posts)
7. My wife and I have the same kind of genetic minefield
Fri Oct 11, 2019, 09:27 AM
Oct 2019

Both my parents and all their siblings had cancer. With me it's not a question of "if," but "when." My wife has had cancer twice now, and the second time, it was a rare form of uterine cancer known here in Germany as Der Mörder, or "The Murderer." The first time, in 2001, it was a nasty form of breast cancer, but most of her female ancestors had cancer (her mother twice already, too) and beat it to live into their mid 90s. A year of operations, chemo and radiation beat the breast cancer. She was that one case in 10,000 where the Murderer was discovered by sheer accident, and in its initial stage, and she beat it, too. One of her female friends across the border in the Netherlands had it, too, but it was discovered (as usual) too late. She didn't survive a year after diagnosis. We also have the good luck to live in the Düsseldorf area, with several top clinics nearby specializing in cancer treatment, including "the Murderer." It's a true rarity that anyone actually survives that, but they are experts in treating it in its later stages, too.

When it's my turn, I hope not to be a burden on her if she's still around. Being German, her German health insurance took care of her treatments. Since I am not, and my employer isn't either, I'm stuck with my American insurance, which is to say, virtually none at all. The Germans are quite willing to take 50% of my paycheck , but give me nothing in return.

Newest Reality

(12,712 posts)
6. Suffering.
Fri Oct 11, 2019, 08:50 AM
Oct 2019

Life can be difficult, tragic and painful at times. Pain and pleasure come together as a package in cycles. Joy and sorrow, birth and death, and all the other dual aspects of life come and go like waves on the ocean. Various philosophies have delved into that rather deeply.

We may not contemplate that much, especially in this culture, but the problem has been considered since ancient times. People think of Buddhism as merely a religion, but is more of a dialogue and philosophy combined with various practices, and some people are the devout kind, but that is not the main focus really. Hinduism also has a certain type of teaching, like an apotheosis, that grapples with the nature of existence.

So, if you understand that there is a "knowledge" type of teaching and a "devotional" type, then it is clear that our idea of religion does not necessarily apply. The reason there are two types like that is that they recognized that some people are more prone to thinking and knowledge, (philosophy) and other people are more emotive and devotional, (worship, ritual). There is not really an atheist/theist problem here if you understand that, unless you want/need there to be one.

I am bringing that up because we do try to make some sense or understand the suffering and pain that can come with life, but this is not about becoming a Buddhist or Hindu, etc. It is more like, see if this makes sense and is helpful because it is true when you observe. It also might bring more compassion to the table.

There is what are called, The Three Marks of Existence, in Buddhist philosophy, for instance. They are as fundamental as the Four Noble Truths, which focus primarily on suffering and its cessation.

The first mark is that everything, (without exclusion) is impermanent and subject to change. Why does contemplating that matter? Well, notice how we tend to build our lives and personalities around an expectation of the opposite. Doing that is not wrong or bad, we do like stability and consistency, but it is about the suffering that we experience when delusional expectations meet the reality of change. So, perhaps it is then more obvious that, when you observe and admit that impermanence is the rule and not the exception you become more aligned with the reality of it. The more you do that, even though changes may be difficult and painful at times, you are able to be realistic about it and not add to the suffering by way of expectation and resistance, (and I mean the psychological resistances).

A good example of that is the idea of the "second arrow". I won't give the long version. It is about adding suffering to suffering and that is a subject for another time. That can be avoided and resolved with time if it is understood correctly.

Also, we naturally equate pain with suffering and that requires compassion for ourselves and others. However, you do find that as you explore the nature of existence, pain and suffering are not necessarily the same thing which sounds counter-intuitive and does require more depth, of course. It is about the ability to deal with pain better if possible. It is not a dictate or dogma, to be clear here.

I won't go into the next to marks because, for me, they are like levels. When you fully understand the first one and it is realized as true, the second is like a level up and so is the third, at least, that is the way I would relate it.

May all beings be happy, free of all suffering of mind and body and filled with loving kindness!

DFW

(54,426 posts)
8. I don't thnk his expectations can be called delusional.
Fri Oct 11, 2019, 09:41 AM
Oct 2019

As a competent doctor, he is well aware of what happened to him. However, he also knows that recovery from a severe stroke is a lottery that can be won or lost in an instant. Even a doctor is capable of feeling the frustration of willing one's body to do what it has done for nearly seven decades, and suddenly not having it obey. Bridging the gap between understanding and acceptance is not necessarily easy.

I fully understand that pain and suffering are not necessarily the same thing. He feels no pain as such, but suffers immensely merely knowing he is incapable of living his life as he had been doing all this time. As a doctor, he also no doubt suffers from not being able to help treat his son, relegated to being a helpless spectator who understands all too well what his son is up against. I'm sure he is straining against the invisible restraints that his current condition has imposed upon him--and is having to realize against his will that it is a battle he cannot win. Acceptance will come slowly, and I doubt any of the rest of us, his friends and family, would tell him to lay back and take it as it comes at this point. It is too soon, and it would fall on deaf ears.

Newest Reality

(12,712 posts)
13. I am not using the term in that way...
Fri Oct 11, 2019, 09:56 AM
Oct 2019

I am sorry if I didn't make it clear.

In the context that I was using it, it is blanket term, so the psychiatric, pathological definition is not what I meant.

Also, what I conveyed is to be taken as something to be considered in a far more general way, initially. In the case that you are describing, compassion is first and foremost rule, not philosophical considerations. The patterns and habits we accumulate are not easily transcended due to their momentum. However, one can grasp the essence of what was related and ADAPT it to the situation. That's referred to as skillful means, whereas wisdom is its counterpart. It is not about denial of a person's state, condition or view, of course.

With that in mind, relief of suffering is what matters and I apologize for not considering the impact of the wording in a general context.


Definition of delusion

1a : something that is falsely or delusively believed or propagated

//under the delusion that they will finish on schedule delusions of grandeur

b psychology : a persistent false psychotic belief regarding the self or persons or objects outside the self that is maintained despite indisputable evidence to the contrary the delusion that someone was out to hurt him also : the abnormal state marked by such beliefs

2 : the act of tricking or deceiving someone : the state of being deluded … accused the Bohemian of having practiced the most abominable arts of delusion among the younger brethren.— Walter Scott

https://www.merriam-webster.com/dictionary/delusion


Newest Reality

(12,712 posts)
14. To qualify it...
Fri Oct 11, 2019, 10:04 AM
Oct 2019

I would like to add that I am not a Buddhist or Hindu. I find labels, at this point to be superfluous. So, this is not the promotion of a specific means, just a tool for one's toolbox, so to speak. It can be put in many ways.

I am also not: a theist, atheist, anti-theist, agnostic or Gnostic. That kind of statement can frustrate and irritate some people. Those are all particular views that one can hold or argue for or against.

Be Well!

Fla Dem

(23,723 posts)
15. Out of the blue. like a bolt of lightning. You never know. So sorry for your friend and family, and
Fri Oct 11, 2019, 01:40 PM
Oct 2019

YOU!

I think a brain MRI should be done every 5 years, just like a a colonoscopy. Brain cancers are silent killers, that all too often aren't detected until it's too late.

DFW

(54,426 posts)
18. If they could be done cheaply, along with comptetent evaluation
Fri Oct 11, 2019, 03:21 PM
Oct 2019

If that were possible, they probably WOULD be done every 5 years.

in2herbs

(2,947 posts)
16. About a year ago NPR had a story about survivors of a vaccine given to people with
Fri Oct 11, 2019, 01:41 PM
Oct 2019

this disease. They were all in the UK and I remember one survivor was 5+ years. I'd have the son investigate this. NPR may still have the story as a podcast. Good luck.

DFW

(54,426 posts)
17. We'll pass it on.
Fri Oct 11, 2019, 03:18 PM
Oct 2019

5 Years with a glioblastoma is close to a record (I think 7 years is the record after diagnosis). My wife's brother was given 6 months after his diagnosis, and he lasted two and a half years.

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