Thursday, February 12, 2009

Some news....


I thought I'd share with you something we, as a little family of two + fetus, have been trying to juggle over the last two months.
As some of you may or may not know, Trevor has had cancer twice in his short 33 years. He is a ticking time bomb...cancer, falling off of balconies....this guy has nine lives.
Since before his first diagnosis with lymphoma 10 years ago he has had night sweats, which were associated with the growing cancer. After receiving radiation and chemotherapy he continued with the night sweats on a fairly regular basis. A lovely little souvenir from the big C. In the last year his night sweats have gotten worse and worse, they happen nightly...sometimes twice a night. Poor Trevor travels from bed to bed to couch just trying to catch a break and get a good nights sleep. As an oncology RN who works at the hospital where my husbands oncologist, Dr. T, has privileges I have a great perk that allows me to talk to him about any concerns, free of charge, as I please. So...last fall I started to mention Trevor's worsening night sweats. Dr. T blamed them on Trevor's diabetes...maybe low blood sugar at night? So, I tested his blood sugar at random times during the night and when he had sweats....the results were normal.
Blah blah blah, fast froward to December when I finally told Dr. T that the sweats WERE NOT related to Trevor's blood sugar or anything else. So he ordered a CT scan of Trevor's chest, abdomen, and pelvis. This showed a spot in Trevor's small bowel. So Dr. T ordered a PET scan....this did nit light up the spot in Trevor's small bowel But it DID light up a spot in his left thigh. I just thought it was a fluke related more to his big 3 story fall in July....but to be safe we pushed on. A CT of the thigh was ordered and then an MRI...the spot was still there. So a consult with an Orthopedic Oncologist at Rush in the city (Chicago) was ordered. Then a biopsy..and then we were told that it is, in fact, cancer!
A big relief is that it is not a recurrence of lymphoma, but a low grade sarcoma. The tumor is SO small and will only need to be surgically removed with no radiation or chemo. The Orthopedic Oncologist we are seeing is #1 in IL for treating these types of tumors, and #6 in the country. He literally sees and removes hundreds of them a year. Next week we will go back to Rush for an ultrasound to see if they can locate it that way because it is so small and will be hard for the Ortho. Onc. to locate with just the eye in the operating room.
Trevor is super lucky. I actually have had several patients recently with sarcomas in their thighs...and they were in rough shape because these tumors normally aren't found until they are much larger and present with more symptoms. Usually resulting in more invasive treatments.
Since December we've been playing a waiting game and holding our breath in anticipation of the next round of test results. We finally have a solid concrete answer and one that isn't so scary. To those who knew about this the whole time...thank you so much for your kind words and prayers.
To those people in my life who didn't know....I'm sorry that you are finding out this way. I just finally felt like writing about it and am feeling a little tired of updating family every other day with new info and having to look at worried faces all the time. Sometimes I'm not good at dealing with peoples responses to news like this. Some people have that sad look of pity...some people freak out and say things like, OH MY GOD THAT'S HORRIBLE. Some people just listen and give hugs, and that's best.

So...Internet friends, thanks for listening. Have a great night...maybe give your families a bigger and longer squeeze than normal. I think Trevor is getting sick of all of my big gooey hugs.