Intro (finally) On My first anniversary….

What a week!! What started with severe dehydration and dangerously low electrolytes, which put me in the hospital, ended with an absolute miracle.

I went to ER last Friday because of dehydration, thinking they would give me fluids and sent me home. Instead they admitted me due to low potassium and sodium. The stent problem  (mangled, fragmented and open ended metal coils in my stomach) had gotten much worse to where I could not eat or drink, except for what I got through the feeding tube.  After two days of IV’s, they decided they had to keep me until Mayo could take me to get the stent problem fixed.

Memorial day I got a nice ambulance ride to Rochester. I met with a teams of GI Dr’s Tuesday AM to discus how to fix the problem. I asked about a bypass (basically a new hole in my stomach, so food would not have to go through the stents). Things were put on hold so they could discuss this option with a surgeon. Later that day, I was told they would do an Endoscopy first thing Wednesday morning to fix the stent problem, and then we could talk about surgery at a later date.

Wednesday morning, literally 5 minutes before they were to start the endoscopy, a dr came and told me he thought we should forget about the stents and just do a bypass THAT MORNING DURING THE ENDOSCOPY! He explained that this was new technology, but that they had seen very good results with it. IMAGINE, being able to basically perform surgery with no incision, no pain, and no recovery to speak of. Within a hour it was done! If all goes well, within a few weeks I’ll be eating normal, and will probably be able to get rid of the feeding tube (which was placed after the stents made it impossible to eat enough to keep my weight up).

After 18 months, I’m going to get my life back!! This was nothing less than a miracle. This Dr just happened to be available, and I’m sure my surgeon (Dr Mark Trudy) had a hand in making this happen. The whole GI team did an excellent job.

So keep the faith. Miracles DO happen!

Molly

Mary, thank you for the thoughtful response. I agree more research is needed on monitoring. My CA-19 has basically not changed in 1 1/2 years, except for known instances of inflammation. The Mayo surgeon said I was doing “remarkably well”, but I would really like to know WHY, I’m doing so well.

I also have no actual symptoms from the cancer. So all my troubles are related to the supposed “cure”. (Now, I’m whining again, when I need to be knocking on a thousand trees!) I’m just really beginning to question if I shouldn’t just go out and enjoy my life and worry about this when it actually becomes a problem. Of course, that could be too late.

What I need is to give myself a pep talk about eating better, managing my RBC better, so I feel better while I’m still doing chemo. We have also had just a really cold winter and by now it should sunny, warm, and even balmy out (yes, even Feb in MN gets balmy. It makes for the best hiking, skiing, walking, and sometimes just sitting out in the sun.) Makes me smile just thinking about it!

Molly

Sorry for taking so long to post another update.

I was at Mayo in December, they tested for the most common molecular traits for which they have an immunotherapy drug. Came back as nothing unusual.

Met with the surgeon regarding the stents and the possibility of a resection. Answer was NO. So basically, I’m on the feeding tube until they find a cure or I’m dead. The surgeon did say I look a lot better in person than I do on paper (my medical records are full of inaccuracies which really make me nuts), he also thought the good nutrition via the tube was making a difference, as far as being able to better fight disease and deal with treatments.

January threw me into a 2 week bout with the flu, and then I stupidly, had chemo, which threw me down another rabbit hole (RBC really low), then I had a problem with the feed tube becoming dislodged and creating a lot of pain, and bile. So now hopefully the drama is over and we can maybe start to get back to normal.

With all of this, there is GOOD NEWS. Still NOTHING showing up on the Ct scan. How can this be? I have all these mets in my omentum. The surgeon saw them back in Sept of 2016 and biopsied them, but they still don’t show up. As far as Mayo or anyone else can tell. my cancer has not grown. Not complaining mind you, just still wondering if I shouldn’t just ignore it until it shows up. Treatment’s getting old…….

Molly

Time for an update.

The GREAT NEWS is my cancer is still basically doing nothing. As far as anyone can tell, there has been no progression in a year (knock on wood, knock on wood, knock on wood (you get the drift).

But, back in September I found myself getting kind of depressed. I had been on chemo for a year, and decided I really needed a break. Fall in Minnesota is the best time of year, especially if you have a horse. I wanted to have the energy to fully enjoy it, without the weekly chemo crap. I ended up taking 6 weeks off, during which there was no progression (again knock on wood…), but I also didn’t feel that great. The energy didn’t return, the weather sucked, and I found myself getting even more depressed.

I decided a consultation at Mayo was in order to 1. get the molecular testing done and 2. to see if I had any other treatment options or even to see how much we might vary what I am doing. Since I don’t have “measureable disease” (nothing shows up on ct scans). I know I don’t qualify for any clinical trials, but are ct scans every 2 months necessary, and how often could I take a break from chemo?

I had a good meeting last week. No, I don’t need CT’s every 2 months, go 3-4 months and use the CA-19 as an indicator. I specifically asked if the chemo was actually doing anything, or is this just a very slow growing cancer. It is slow growing, but I could go off the chemo and then see what happens, monitoring the CA-19. Not sure I’m comfortable with that. Anybody have any thoughts?

But, going off chemo doesn’t really improve my quality of life that much. I’ve still got 2 stents in my duodenum that give me nasty back aches, and are the reason I have the feeding tube. I haven’t been able to eat since the first stent was put in, and they are permanent. The tube is a pain just because it ties me down, making it hard to go anywhere in the evening. I asked about a resection and about possibly getting rid of the stents. Not sure that can happen, but he suggested I meet with a surgeon, and that is scheduled for the end of December.

So once again, I feel terrible complaining, because even with such a terrible disease, I am still doing remarkably well, better than I ever expected, and because of this, it makes sense to try to resolve these other issues. And, I am still crossing my fingers that the molecular testing finds something.

Molly