More surgery results

Hi everyone.  Joel here.  Yesterday we received good news and bad news.  The good news was that Eila and Dana were finally discharged from the hospital.  They will be staying in Ann Arbor until Thursday night when they’ll fly home.

The bad news has to do with Eila’s chemotherapy from here on out.  Prior to the trip, Dr. Thomas (our oncologist here in Portland) mentioned that he expected that we may be able to lower Eila’s chemotherapy dose after surgery, perhaps eliminating one drugs.  He said he and the other doctors (i.e., our surgeon and the oncologists throughout the country with whom we have consulted), would have to reconvene after the surgery to develop her post-surgery plan.

Yesterday we received an email from Dr. Ehrlich (our surgeon) recommending that we maintain her current chemotherapy and add radiation therapy.  Dana and I were shocked and confused to see that radiation therapy, something we have been so thankful to avoid until now, has suddenly been added to the mix.  As many of you probably know, radiation brings with it a whole new set of problems and concerns, including: (1) renal failure (radiation damages the very kidney we’ve been working so hard to save), (2) it increases Eila’s risk of developing other cancers, (3) it can mess with Eila’s ability to have children later, and (4) it apparently can be very painful for Eila.

So if the surgery was a success, which we were lead to believe, why are we going to have to introduce a new harsher treatment into Eila’s regiment?  Unfortunately, since receiving yesterday’s email, performing some of our own research, and talking on the phone to Dr. Ehrlich, it now looks like Eila’s surgery was not the success we thought.  The entirety of Eila’s tumor was removed, so that’s good.  However, it took them two attempts to do so, which is problematic.  In the first attempt, the surgeon determined that the margins were not clean (i.e., cancer cells were at the edges of the sample so there was still remnants of the tumor in the kidney), so they had to go back and cut out the remains of the tumor (which they did). 

Dr. Ehrlich told us they’d had to go in twice when we met with him after surgery, but we understood the surgery to have been successful.  As far as we understood the downside of having to go back and remove more was that Dr. Ehrlich cut into the kidney’s the collection system causing a urine leak that prolonged Eila's hospital stay.  Ultimately this leak is repairable but it will take more time than originally expected.

Well it turns out that the two-step removal affected more than Eila’s collection system, it also triggered an oncological “spill,” which means that open portions of the tumor were exposed to Eila’s body (albeit briefly), increasing the chances that microscopic tumor cells “spilled” into Eila’s abdomen.  It doesn't sound like there's any way to know if a spill actually occurred, so the standard protocol is to add radiation therapy.  Yesterday’s email was the first Dana and I had heard of a “spill” or the potential need for radiation therapy.

Now, with a clearer picture of what has happened, our doctors are talking among themselves to reach a consensus as to whether radiation is in fact necessary.  We have a meeting on Friday morning in Portland with Dr. Thomas to hear the final recommendations.

This new understanding of the surgery has been very hard to process and we are left feeling a bit misled.  We are also very sad and frustrated, partly because we just spent two rather hard and stressful weeks in the hospital under the impression that everything had gone well, but mostly because of what it means for Eila moving forward.  Radiation and everything that goes with it present just one more obstacle that will make it harder for Eila to ultimately be Eila. 

We love her very much.