Giving it a try...

After the appearance of the clot took my options off the table, we went in and met with the lead interventional radiologist, and based on our discussions and our stressing my willingness to assume risk to try and get a beneficial outcome, he has agreed to try and place a stent in my portal vein, including the area now effected by the clot.

We will do the procedure 11am on Wednesday at MGH, and he estimates a chance of success in only the 5 to 10% range due to the size of the area and the complicated nature of my current real estate. The risk of serious harm to me is much lower in the 20% area, due to the risk of bleeding that I have due to the portal hyper tension... We asked him to be very aggressive and try this even though this is a procedure which normally would not be done.

This is something that I can do, and right now just having something to try gives me comfort, even though the chances of it working are so low...

This will be a pretty standard stent placing procedure where they pass through big arteries around the heart to get near the liver and the portal vein so they can attempt the stent.

It would normally be an out patient procedure, but they reserved a bed for incase they need to keep me in.

We'll try and post the outcome as soon as we can...

Thanks for all the positive thoughts...this week I can really put them toward a specific goal...

xoxo d

Clean Scan, but with a catch...

Yesterday I got another clean CT scan showing no cancer growth. However the same scan shows a clot forming in my portal vein near the original blockage. The team met Tuesday and took the stent off the table as a treatment because of that, leaving me with the previous symptoms intact. We will be meeting with the interventional radiologist soon to discuss this and look for alternatives, but having the ulcer in my gut complicates everything as the blood thinners I would need to treat the clot (or manage the stent) will also cause bleeding of the ulcer... blood flow in that area is already slow so the chances of worse clotting is likely. (this is not a dangerous clot area for lung or brain damage, different system)

So right now things look grim. We will run all this by all our care takers including, each expert at MGH, and my naturopath and then proceed, to see if there is a way out of this mess for me...

Complications...

The repercussions of my illness have been vast. My loved ones and I have been through a lot and have learned allot along the way. Treatments both traditional and alternative have been exhausting, and as new challenges rose up, we have adapted, educated ourselves, made decisions and then attacked with all we have. And happily, we have been largely successful, demonstrated solely by the fact that I am still here counter to all original predictions.

These last couple of months have been a challenge, 1st dealing with the intestinal ulcer and bleeding, which turned out to be just the beginning of a variety of other issues that have emerged just as we were starting to allow thoughts of me having beat this cancer slip into our minds...

It turns out that the location of the original tumor is the cause of all my recent problems. Because it encased a major artery in my gut, it made me inoperable, and now two years later it seems that swelling and scar tissue from the interoperative radiation operation I had last year is constricting the artery and is causing my new problems. The constricted blood flow has caused portal hypertension, meaning a backup of blood and fluids is causing veins in my gut and esophagus to swell to a very large size with the risk of life threatening bleeding. Right now the veins in my esophagus are almost blocking the passage way. I was told by my local GI doctor that my only treatment was to take beta blocker drugs for life that would lower my blood pressure to reduce the risk of bleeding and I had to avoid all physical activity that might raise my blood pressure...No digging in my garden, no carrying anything heavy, no building, no strenuous activity of any kind. As a maker and a teacher this has been a terrible fate to come to terms with. And to make it worse, the drugs cause terrible fatigue, so I have been taking naps all day and can barely teach. These past few weeks have been some of the most challenging of our journey. Really depressing.

We decided to do what we did when I was first diagnosed with this disease: to use all of our powers to find the best people in the field and see if there were any other options that could help or at least ease some of my symptoms so that I could improve my quality of life.

Through my MGH oncologist we met with some liver specialists who discussed my case with the MGH team which includes lots of specialists: my oncologist, surgeon, interventional radiologists, and liver specialists,etc... and we received a call the day they met saying that they think they can put a permanent stent into my portal vein that has the potential to reverse all of these problems.

Things are now moving very quickly. Today I had almost a gallon (8.5 lbs.) of fluid drained from my abdomen (ascites, another side effect), and tomorrow I get another CT scan to make sure that the cancer hasn't returned and to provide a map for the radiologists to figure out how to get the stent in place. (we just had a clean scan in Feb. So we are hopeful that I'll be clear) There are still things that could go wrong or make this not happen, and the procedure will be dangerous due to my issues in that part of my body, but just the fact that the team thinks they can do it and there is a chance to reverse this and give me a more normal life feels like a warm hopeful light has just been turned on inside me.

I'll try and update this page more as things progress...It's been hard to write when there was only darkness...

Today...spring blooms in my garden and also possibilities....

Detour

Basking in the relief of my last clean scan, I looked forward to another three months of staying quietly on task, focusing on diet and supplements until my next scan at the end of April...

Unfortunately, another path unfolded for me.

This past Thursday, I got out of Mass General Hospital after almost a week of difficult drama. It's been a continuation of some internal bleeding issues that had put me into Emerson Hospital two other times during the last few weeks... Last Friday I ended up in the Emerson ICU unit and was eventually transferred to MGH, under the care of my oncology and surgical teams.

It was difficult for my team of doctors to figure out what was causing my bleeding issues, but after MANY tests (including lots of endoscopes), by Tuesday they concluded that it wasn't a return of this cancer I've been struggling with since 2009, and eventually a clear diagnosis and treatment plan came out of that.

Very good news for me! I have a nasty gastric ulcer just inside my duodenum.

I still have a serious condition, but one that can be treated and that I can recover from. I was stable enough to go home, though I still have to work out some medication and treatment issues, and I have to rest and heal some more before I can fully return to school. They believe that a combination of conditions in my body put me at risk for this gastric ulcer; complications of the cancer's involvement with the veins in my gut and subsequent radiation in that area (portal hypertension), as well as the heavy use of advil I've used over the years for my separate chronic back pain. I now need to live with new medications and an understanding of the ways that my body is compromised...

This sickness nonsense has been driving me crazy... and on top of all of it, Monika is in India until Wednesday on a school trip, so my timing was terrible!

I'll be staying home resting and healing for the next week or so before I can go back to work.

Many friends and family members stepped up to help me and to help keep our lives running at the house (the dog and chickens to say the least...) as well as at school, and many others with visits and words of support, so as usual: Thank you.

This has been one of those crazy months, but now I'm home, I'm on the mend, spring is breaking and today I actually feel pretty damn happy...

I don't know why but I'm not complaining...

Scan #3: Clean!

NO CHANGE!!

My oncologist reports that all indications are good. There has been no change in my scans or my tumor markers, indicating no cancer activity. He noted that my news is atypical, as pancreatic cancer usually comes right back without treatment. He says that with each scan I can feel that my odds of survival increase. I'll have my 4th scan at the end of April, marking the 1 year point since the IORT operation. At that point we'll push the scans to every 6 months. After 2 years I can start to feel optimistic, but by the 5 year mark I will be considered cured.

This week I had a fair amount of anticipatory stress as I awaited the appointment. That's a pattern of every scan result. The impending snowstorm increased that stress when I thought I might not make it in due to weather.

It's difficult not to futurize negative outcomes. In this week leading up to today my mind has been playing out how I would deal with the next few days if the news was bad. Would I go to school and start my second semester classes tomorrow? If I have only 6 months to live would I teach? What would I do? Monika brings me back to the reality of the moment, and that the decisions we make are based on the facts we have. For nearly 3 months I run around happily leading an almost normal life, the cancer a minor player in the shadows... then I have a scan and it reminds me that I still live with another reality...

Every clean scan brings me a bit closer to closing this chapter of my life...

scan #3

On Thursday, I get the next CAT scan to measure where I am on this journey. Obviously, I am hoping for the same results as in the past, another clean scan on a path to being declared free from this cancer.

I feel healthy, strong and full of energy, and am hoping that those feelings will be reflected in the scan. I'm trying to just get on with my life and am happily back to my full, busy life...

The worst part of all of this is the not knowing.... running around under an ever present sword of Damocles...

I'll get the scan results on February 2, so check in after that for the results...

Marking Time

The good news is that I have no news to report. I'm marking the passing of the new year quietly, feeling well, with energy and gratitude to family and friends.

Thank you for being interested in my plight, for checking in here, and for sending me good thoughts. I feel that many things have collectively contributed to my still being around to post these notes, not the least of which is all the human energy being expended on my behalf in the form of thoughts, wishes, prayers and actions... hard to quantify, but impossible to deny from where I stand.

Early next week I will get my latest blood test results through my naturopath, and they should inform us about the effects of some changes we've made in my supplements. Basically, we have cut back on some supplements to see if my healthy blood levels are being achieved by taking the supplements or by the healthy state of my body (being cancer free). If the numbers change, we pump back up the supplements... otherwise we follow a maintenance course...

I get my next CAT scan the last week of January, and will get the results from my oncologist on February 3rd. If I continue to have a clean scan, then I will eventually switch to scans every 6 months... cautiously heading toward that magical 5 year date where they stop looking for darkness...

In the meantime, I wish you all a new year full of wisdom and good health...

-D