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Tue Dec 22, 2015, 08:32 AM

Two questions - Sorry it was more than six months ago that I posted my announcement

Last edited Tue Dec 22, 2015, 11:48 AM - Edit history (1)

that I had been diagnosed with Esophageal and upper Gastric Cancer - now determined to be level 3 to 4.

Since then I completed 28 radiation treatments and five chemos and am taking my sixth one - a 48 hour session - now as I sit here typing.

So far there has been some decrease in the diameter of my tumor - but not its length - It apparently is a real tough one - as one gastroenterologist told me - it is like a long - 11-13 cm tube of tough rubber and metastasize has spread to my lymph nodes and perhaps elsewhere.

My first question for those who would like to answer - How do you feel about making yourself DNR/DNI?
- do not resuscitate/do not intubate - in other words - if one stops breathing or their heart stops - let them go - if that is what is happening. Since I am a Respiratory Therapist by trade - I do have some idea - probably a bit more than many on the realities of the situation. So today, I did sign the forms. The doctor did NOT bring it up to me. I brought it up to him and he was supportive of my decision. For me - I just don't want to live if I should reach such a point - only to be revived and then be even sicker than I am now.

My second question which has nothing to do with my first question and is of a totally different nature involves a very strange symptom I have been experiencing lately. I have heard of it before associated with cancer and one friend who has bowel cancer says he has experienced many times also.

Just recently - and it was more than a month after my last chemo and before I started my recent regiment that I am doing right now as I type - I started seeing spots before my eyes and sometime blurry colors off to the far corner of my vision. My primary physician who is a doctor of internal medicine - not an oncologist says that he was not familiar with this symptom being associated with cancer. But like - I do recall hearing that from people with cancer. Am I one of very few?

Anyway thank you for your time. I should have come back sooner to check in. But what can I say? I have been terribly moody since my diagnosis.

thanks,

doug

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Arrow 17 replies Author Time Post
Reply Two questions - Sorry it was more than six months ago that I posted my announcement (Original post)
Douglas Carpenter Dec 2015 OP
marble falls Dec 2015 #1
Douglas Carpenter Dec 2015 #2
marble falls Dec 2015 #3
LiberalEsto Dec 2015 #4
Douglas Carpenter Dec 2015 #5
Douglas Carpenter Dec 2015 #6
LiberalEsto Dec 2015 #7
Douglas Carpenter Dec 2015 #8
LiberalEsto Dec 2015 #9
Douglas Carpenter Dec 2015 #10
marble falls Jan 2016 #11
Douglas Carpenter Jan 2016 #12
marble falls Jan 2016 #13
Douglas Carpenter Jan 2016 #14
marble falls Jan 2016 #15
Tab Jan 2016 #16
marble falls Feb 2016 #17

Response to Douglas Carpenter (Original post)

Tue Dec 22, 2015, 09:39 AM

1. First of all, you've had a rough haul fighting this cancer and my prayers are ...

with you.

Regarding DNR/DNI, the correct time is when you know in your heart this is no more ground to contest with your cancer to meaningfully extend your life and before that decision becomes substantially out of your hands. At the point you are with your cancer now, it may be well the time to sort it out in your mind and to make your decision known to all parties - designating someone you trust implicitly to act in your interest if the time comes that health events overtake your ability to give consents or orders to accomplish your wishes.

I admire your courage and strength. I've had exactly one chemo and I was shocked how it took the stuffing out of me. I've discussed DNR/DNI with my primary physician and my wife and anybody who knows me knows my wishes, even though with the cancer I have - bladder cancer - it may be years and years before DNR/DNI becomes immediate.

DNR/DNI discussions do not mean you're giving in to your cancer, its means you've got one more strategy in keeping your life in dignity and out of desperate struggle with no good results. Its not about letting cancer win, its about maintaining your own control.

I feel maintaining control of how we treat my cancer helps me stay healthy and that includes using the DNR/DNI as another tool, only helps me stay as healthy as possible.

My prayers are with you.

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Response to marble falls (Reply #1)

Tue Dec 22, 2015, 09:50 AM

2. thank you very,very much

I might kick around for a long time whether I am DNR/DNI or not. Lots of people do - but it is a minority for my kind and stage of cancer. But it is certainly not unheard of. I just want to make peace on this issue - since the word cancer and its association with death is so frequently and frighteningly connected.

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Response to Douglas Carpenter (Reply #2)

Tue Dec 22, 2015, 10:03 AM

3. I have a little cancer support group with a woman I know, we have cancer....

but we aren't cancer. Cancer is part of me but I refuse to let it define me. And the same is with death. I will die but not today. My life is and has been good. But when its time, I'll go because death is part of the deal.

Cancer affects me, it may steal/already stolen some days from me but it will not take my life even if it limits my time.

I'll be paying attention to your posts. I will try to add to your life even if I cannot add to your days. And I'll be looking for that same thing from you. One way or another we can beat this, and already are.

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Response to Douglas Carpenter (Original post)

Tue Dec 22, 2015, 10:55 AM

4. I'm so sorry about what you are going through, Douglas

 

Regarding your question about blood spots, I just received a holiday letter from a longtime friend. She has been diagnosed with a myelodysplastic syndrome (MDS), a bone marrow disorder that causes problems with blood cells. She said she developed blood spots in her right eye and hasn't been able to drive for months. I think, from looking it up, that her condition is considered pre-cancerous.

Don't know whether this info is of any use, but hope it helps you somehow.

Blessings of healing and peace to you.

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Response to LiberalEsto (Reply #4)

Tue Dec 22, 2015, 11:49 AM

5. thank you so much and God Bless

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Response to LiberalEsto (Reply #4)

Tue Dec 22, 2015, 01:31 PM

6. I just noticed now that it is in only my left eye. If I close using only my right

eye - I don't get those strange hallucinations - if that is the right word to call them.

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Response to Douglas Carpenter (Reply #6)

Tue Dec 22, 2015, 02:21 PM

7. A second thought - can you get your eyes checked? nt

 

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Response to LiberalEsto (Reply #7)

Tue Dec 22, 2015, 03:18 PM

8. probably, I will have to look into it. It doesn't cause me any particular problem

at this point - but, can it be symptomatic of something more serious?

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Response to Douglas Carpenter (Reply #8)

Tue Dec 22, 2015, 03:30 PM

9. I don't want to be in the position of giving medical advice

 

DU specifically prohibits this, and I'm not qualified anyway.
I can only say that if you have odd things going on in an eye, it might be worth while to have your eyes examined, or at least looked at by the next physician you see.



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Response to LiberalEsto (Reply #9)

Tue Dec 22, 2015, 03:53 PM

10. I think it is safe to say that advising someone to see a proper doctor to check

something out is the kind of medical advice that no one in DU admin would object to.

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Response to Douglas Carpenter (Original post)

Wed Jan 6, 2016, 07:55 AM

11. Been a couple of weeks, how were your holidays? Thought about....

you and hoped things were as good as they can be.

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Response to marble falls (Reply #11)

Wed Jan 6, 2016, 09:06 AM

12. well, I'm gettin another round of chemo right now as I sit hear typing

I have one more to go for this regiment. Then after a few weeks, I will have another full body CT scan to see where things are at.

My main symptomatic problem involves eating. With both a swallowing problem and a settling in my stomach problem caused by the esophageal and upper gastric CA - I feel full and usually a bit nauseous after eating even fairly small amounts of solid food. Yet, I can still at times feel hungry and the food still looks good to me. I have always been a great lover of all kinds of food. But this business certainly takes away the joy of eating.

Since I have been on prn opiate based pain relievers - any sharp, harsh pains have been minimal.

Thanks very much for your concern. Like so many others, I'm just waiting to see what comes next.

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Response to Douglas Carpenter (Reply #12)

Wed Jan 6, 2016, 09:33 AM

13. I had a bit of hungry till the food hit the table and then I felt full...

and sick for weeks after my one and only chemo. Hemp helped.

Sounds like you are as good as can be expected. Lets stay in touch.

I am embracing whatever's next. Its not going to sneak up on me.

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Response to marble falls (Reply #13)

Wed Jan 6, 2016, 09:59 AM

14. If all goes well I will have some hemp tomorrow

Until my diagnoses I had not used the stuff in several years. But, I do find it helps. Along with reducing some symptoms - it puts me in a better mood. It kind of makes me reflective and philosophic - but in a mallow and happy way - not a depressed and downer way.

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Response to Douglas Carpenter (Reply #14)

Wed Jan 6, 2016, 12:10 PM

15. I know exactly what you mean. My 30yr vet of CIA wife has finally ....

come around. Its helped with my coming to terms with my own mortality. And I don't do well prescription pain or nausea relief.

I am not wanting to 'leave' today and the right medication helps me to continue feeling that way while easing pain better than anything else and relieving nausea.

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Response to Douglas Carpenter (Original post)

Wed Jan 6, 2016, 07:43 PM

16. Hi Doug and best wishes

Last edited Thu Jan 7, 2016, 12:35 PM - Edit history (1)

I apologize that I haven't seen this until now.

Since you asked, I'll offer my thoughts on this, but I'll do it in reverse order (easiest first).

FYI, I have stage IV cancer, years of chemo, modest amount of radiation (I think).

Spots before my eyes. No, I haven't experienced this. However, the chemo I had for a long time had steroids in it and it created a chemo-induced diabetes which will fuck up your vision (and thirst, and mentality, etc.). That's the only thing that comes to mind in my experience. You probably had a different mix of chemicals, but I don't think you're off in attributing that visual effect to one of them - I just don't know which one.

DNR/DNI is one of the issues I've thought long about. I am aware that my situation is terminal. I'm also aware surgeries are risky. I don't have a problem if I go into surgery (none anticipated right now) and there's a problem on the table and they have to pull me back (happened once already) but because it is terminal I don't want to be revived or intubated out of surgery, particularly if I'm not likely to come out of it. My family is with me (note: if your family is NOT with you then you particularly need to get legal documents expressing your wishes, although that's a good idea anyway). We've had family members kept on life support before - not a lot - but we all agree it's no place we want to be if it's likely terminal anyway.

Anyway, your thoughts may differ, but that's my take on it. You can feel free to PM me if you want and discuss it further. I find it a fascinating aspect I never really had to explore until I was the subject itself, then it became all too real.

I will say my Dad was on life support and we all wanted him off. He was rendered basically paralyzed by a stroke and could only communicate with eyeblinks. No one, especially him (we knew from before), wanted that. Luckily, he was able to leave us after a few days, but I don't think any of us, certainly not him, would have wanted him to continue in that state.

On edit: Oh, as an addendum, I have also been diagnosed with myelodysplastic disorder, mainly based on my difficulty making platelets. I don't recall any spots on the eyes, at least in my case. You may well be different, but the point is that I never had it and therefore I can't attribute it to my myelodysplastic syndrome. YMMV.

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Response to Douglas Carpenter (Original post)

Wed Feb 24, 2016, 09:08 AM

17. Hey, Doug! I was thiking of you for the last couple of days and saw your latest thread.....

Sounds like its a tough fight but you sound up for it even as you put things into an order.

I've been clear these two checkups since the last surgery. But in that its been the third surgery (with a baby chemo), I know I need to be positive, and vigilant.

You're still in my thoughts and prayers.

Herb

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