Still in the hospital....

David had a scary setback yesterday, when the doctors discovered some bleeding around his liver. This, most likely, is fallout from his Monday procedure. The trouble is that because he is on blood thinners, any bleed could be life theatening, and if they take him off the thinners, hecould form clots in the stent. They put him on rest, gave him 3 units of blood, then watched and treated him all day yesterday, and today things seem stable again. It means, however, that he will remain in the hospital for a while longer, perhaps through the weekend. We are both weary and bone-tired, but cautiously optimistic that he is now on the mend. If friends or relatives plan to visit him around lunch or dinner times, the word is that he is heartily tired of hospital food, and wouldn't mind an occasional tasty meal in its stead. And as always, we welcome your kind thoughts and prayers for a speedy recovery.

Peace and love,

Monika

YES!

The picture above is a scan of the small totem I found on the sidewalk today when Deb and I walked back from lunch, while waiting for David's procedure to take place. After a long day in the hospital waiting room, we found out that the procedure went well. We are SO relieved and happy! When the doctor came out to tell us the news he said that David is "a very brave man". I'm not sure, exactly, what he meant by that, (where there things he didn't tell us about?), but the procedure went well, and that is all that matters. The doctors will keep watch over him tomorrow, and perhaps the next day. We are hoping for continued healing and success!

To all a good night!

Monika

Update

Since his procedure on Wednesday David has been under observation in the hospital. A few complications have arisen, which necessitate another operation tomorrow morning. His stent is blocked by a blood clot, which needs to be removed, and another stent will be added, in order to take some of the pressure off of his portal vein. This should not be as risky as the operation he had on Wednesday. Still, it is not the development we were hoping for, but we are pushing on, and David is hopeful that this will alleviate his symptoms.

We welcome healing thoughts and prayers. We have been, and continue to be, fortified by the love and good wishes of our families and friends. Peace and blessings to all of you.

Monika

Wow!

David went in on Wednesday for his procedure.

Let me just tell you that the week preceding this event was one of the most tense and stressful times of our lives. We had been told that the operation had a 5-10% chance of success, a 90% chance of failure, and a 20% chance of him bleeding out and dying on the operating table.

Before going into surgery David made his wishes clear to the surgeon. "When you get to the point where you feel it's time to quit, just push on through and get the thing done", he said.

Deb and I sat waiting in the waiting room. The doctors had told us the operation would be at least two hours, but could last up to 4-5 hours. After 5 hours had passed and we had no news, I started getting worried, picturing David bleeding out on the table. Then, 5 1/2 hours into it, he came out. The operation had been an unexpected and complete success! The surgeons had achieved all the goals they had hoped for! They dissolved all but a small part of the blood clot, the inserted the stent, opened the portal vein, and the varicies had immediately gone down. It was a moment of pure joy!

To make a long story short, David is spending a few days at Mass General for observation, but is recouperating from this grueling procedure, and getting stronger and better each day. I tell him he certainly has a way of beating the worst odds, and that maybe the next thing he should do is to buy a lottery ticket. The main thing here though is that he is, presently, doing well, in spite of expectations to the contrary. Keep your good wishes, prayers and healing thoughts coming. We are not yet out of the woodworks, and welcome any help we can get. That said, we are deeply grateful for all the love and support we have already received.

Peace and Love,

Monika

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....