Sometimes, time stands still

Our visit to Sloan Kettering was informative, frightening, comforting, and busy.

We met with the oncologist for over 2 hours.  He was a wealth of information.  He explained that Mike would not be a candidate for chemotherapy as there are no "cocktails" that can "cure" this.  And, in reviewing what they do have available, the benefits do not outweigh the risks.  But he had already met with the surgeon and the radiologist and they have mapped out a plan.

The meeting with the surgeon was also informative.  He explained that, although they do not have back their final pathology, they are not expecting to find anything different based on origin of  the reports that he was given.  He said, "the slides were sent to the 'best of the best'".  That was comforting.  He explained the surgery that he wanted to do -  "make an incision down the side of his nose, where the nose 'meets the face' - remove a sliver of the nasal bone, the cheek bone, and the soft tissue in between - all the while NOT disturbing the surrounding area and taking things out in one piece so as not to send off any errant cells".  He explained that it was not his job to do the most non-invasive surgery, it was his job to do the most effective surgery for the best possible outcome. 

Mike wanted to know why the Pet Scan did not light up and yet it seemed like they were taking drastic measures to "clean out the area".  We were told that it takes hundreds of thousands of cancer cells in one area to light up on a Pet Scan.  AND, in this case, this cancer is so aggressive that all it would take is for one cancer cell to go awry and it would divide, divide and divide until another cancerous tumor formed "somewhere".   The surgeon explained that they would do radiation treatments after he healed form surgery in order to eradicate any possible cells floating around that area.

I asked the doctor, "So, after the surgery and after the radiation, can we say that my husband is cured?"  He responded, "We can NEVER say he is cured with this type of cancer."...... and time stood still

Surgery was scheduled for Oct. 9. Mike then had 2 MRI's and a CT Scan.

We meet with the radiologist on Friday to hear his portion of the plan.

Then you hope they made a mistake

The final pathology came back from Beth Israel in Boston as a neuroendocrine tumor.  The surgeon at LIJ wants to do more surgery. 

In the interim, Sloan Kettering called me.  Mike has been "accepted" as a patient.  We have an appointment with the medical oncologist and the surgeon next Monday 9/23.  They are trying to squeeze us in to see the radiologist next Friday 9/27.

I had the slides sent to Sloan.... they want to review all the material themselves before accepting any diagnosis.  I can't help but hope there has been an error somewhere...

It's gonna be a long week.

First you pray

Mr. Wonderful had a nasty sinus infection last Christmas.  It just would not go away.  He saw our family doctor for 2 rounds of antibiotics and then a round of steroids.  Around March, he started saying that he needed to see an ENT - so I gave him the name of one to call.  April and May came and went and he still complained, but did not make that appointment.  FINALLY, in June, I called the doctor and informed Mr. W that he was to see this new doctor the following week.

The doctor sees a "mass" in Mr. W's right nostril and immediately sends him for a CT Scan.  That was right before 4th of July weekend.  We were told that the doctor would have the results in a week.  2 days later, we get a call that the doctor wants to see him right away.  He was referred to another specialist at LIJ Hospital.

This new doctor looks at the scan, peeks up Mike's nose and says, "Oh boy, that's gotta come out!  No hurry, though, whenever you are ready, we will operate and you will breathe a whole lot better."  He explained that this mass started up by the frontal lobe of Mike's brain and travelled down the sinus path into his nostril.  He assured us that this is never malignant.

We were not waiting.  I started the process that afternoon.  We were fortunate to be squeezed into the schedule on August 8.  The surgery went smoothly.  The doc explained that this mass was even creeping down the back of Mike's throat!  He said Mike would be a new man and his appetite should pick up too.  YAY!!!

Imagine our shock when we were called by the surgeon's office to come in "right away".  Although I did not like the sense of urgency, I assured Mike that it was probably just protocol to release him as a patient.  Boy, was I wrong!  The pathology came back on the "mass" as a malignancy.  The doctor had the results for over a week, but continued to send them out to other places for clarification (Mayo Clinic, Boston, the Army, etc.)

We were then sent into a whirlwind of appointments - within 10 days, we met with the surgeon, went for a Pet Scan, had a biopsy done on a "suspicious" lymph node", met with a radiologist who would perform radiation therapy and a doctor who would administer chemotherapy.  All reports have been sent to Sloan Kettering for another opinion, as well.  All the ground work is laid, but we are still waiting for the final pathology to proceed. 

They have narrowed it down to 2 possibilities.  A Neuroblastoma of the Olfactory System or a Neuroendocrine Tumor.  Both are rare, both are aggressive.

First, I prayed...... now I ask you to pray for us, too...