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A special anniversary for me


Kangaroorex
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2 hours ago, Marvin said:

I'm late to this party, but job well done on getting here, dude. Keep winning.

 

My mom was diagnosed similarly almost three years ago but had a much better prognosis as these things go--softball- size tumor, lost the kidney, but so little spread it took months after the surgery to detect it. It's miraculously held steady all this time, in defiance of predictions, but we know the day will come when the fight turns active again. I was excited to tell her about the sort of immuno- and targeted therapies you mentioned. Knowledge is power, etc. Thanks for talking about all that.

Glad to hear she's still with us!  Also good to hear that the remaining mass sounds like it's stable.  That's great!  The new treatments have their issues but are worth the trade for survival. I still have a (reasonably ::P:) normal life complete with full time job,  except for a few weeks after surgery, I never really have had it stop me. 

 

Tell her to keep up the good fight!

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Had a rather interesting experience and some news.  Most of the people who read this know I've had a rough few months at work helping the recovery efforts from a major cyber attack and a bankruptcy.  Basically I've now gotten 11 days off for 11 weeks of work and most of those days were 12+ hour days. (And since I work for a salary, a hearty pat on the back is all I get). 

 

I finally managed to get a few days off this week and the team of finance people I have been working with lately (who have also been working long weeks) were getting a tad ugly about why I should get time off when they still has to work (mind you, they didn't have to work at the start of this mess, they got the first few weeks off)

 

So I did a rather unpolitic thing:  i.just asked how their cancer treatments were going ... The silence was deafening as they realized they were being out worked by a 'terminal' cancer patient.  (I make no secret of my condition at work and everyone interact with I warn up front that there are some things I can't do)  it was satisfying and that was the last I heard of any griping about time off.

 

On the news front, I got to experience advanced wound care for the first time in my life (at the same time all this other crud us going, because Murphy)  I learned some new words like debridement and argent stimulation and capillary pillar.  Most of these seem to translate to "patient is going to experience new levels of pain" 

 

However the ulcers I had on.my shin have finally closed and the flesh has grown back in  (It actually was a pretty amazing process) and my immune system once again proves that it is still stimulated (8 months with an open wound and not one infection).  With luck I get to go back on my cancer meds next week (I literally cannot heal any kind of abrasion or gouge when on my meds)  and with some luck and time we should be able to knock back the few mm the tumor has grown during this little sojourn.

 

My lesson. From this was to be even more careful about scrapes.  This one started so minor that the initial wound didn't even draw blood!

 

Anyway thanks as always for letting me rattle on!

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Update and some bad news/good news/bad news

 

When I restarted the drugs I got a CT scan as a new baseline.  And news is the tumor grew.  This was expected (It is cancer after all and held in check by medication.  The good news is that the drug is working.  The other bad news is that we know this because it tore apart most of the healing done on my leg which most likely means that it will do the same to the added growth on the cancer.

 

So now I need to find a new way out of this little catch 22 and find a way to allow local healing without inducing tumor growth.  

 

Chronic illness is so much fun...  but I'm still here and around to complain it certainly beats the alternative!

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5 hours ago, Kangaroorex said:

Update and some bad news/good news/bad news

 

When I restarted the drugs I got a CT scan as a new baseline.  And news is the tumor grew.  This was expected (It is cancer after all and held in check by medication.  The good news is that the drug is working.  The other bad news is that we know this because it tore apart most of the healing done on my leg which most likely means that it will do the same to the added growth on the cancer.

 

So now I need to find a new way out of this little catch 22 and find a way to allow local healing without inducing tumor growth.  

 

Chronic illness is so much fun...  but I'm still here and around to complain it certainly beats the alternative!

 

I'm glad you're here and wish the best of modern medicine for you. May you stay well and complaining!

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Well, I had my latest CT scan today.  Now I get to wait and see if the medication is still working or if I get to try something new.  My doctor took me off the meds for a couple of months to heal an old injury and the tumor took the opportunity to grow more quickly than expected so I am back on my medications. Which of course promptly ripped apart all the healing on said old wound in about 2 weeks. 

 

Now I get to try it the slow way, stimulating local healing while at the same time systematically telling my body not to heal at all.  Great fun. 

 

Anyway, if you have a spare thought or two to throw my way this weekend, hope that the tumor has shrunk over the last 2 months or at least stabilized.  There are other options out there but sometimes the Devil you know is easier to deal with than the devil you don't.

 

Of course it would help if I could catch a break.  I finally got to take a few days off at the end of june and then work happened and this is the first weekend I have had off since the beginning of July. And then I wonder why I am tired and worn out all the time...

 

thanks for being there.

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