Introductions

I'm starting this blog because my partner of (almost) five years was just diagnosed with high-grade conventional osteosarcoma, osteoblastic form. She has a large tumor on her right ulna, just under her hand. The bone scan showed *something* going on in the ulna at the elbow end, but we aren't sure whether this is an injury to the joint because of the angle at which she has had to hold her arm for the past few months, or because it is a secondary lesion. We are, obviously, hoping for the former, but an MRI next monday will determine for sure.

Katie was diagnosed one week ago today...she had a surgery scheduled that day to remove what we, and the doctors, assumed was either an aneurysmal bone cyst or a giant cell tumor, both benign. We had to be at the hospital at 9, the orthopedic surgeon, a Dr. Damron, who she had seen previously, called at 7:30 to give her the results of the biopsy. I guess it is a good thing that the results came in when they did, as surgery at this point could have caused more tumor growth and a greater chance at metatases. But i will never, ever forget that moment when she hung up the phone and told me that she had cancer..she is only 23, 23 years olds don't get cancer, especially not healthy, vegetarian, non-smoking, active 23 year olds. It felt unreal...it still does.

So we spent the whole day running from one department to another at the hospital, getting all the follow-up tests; bone scan, more x-rays, more mris...and then went home, and sat, and waited...Katie talked to numerous receptionists, all, with the exception of one, were wonderful and helpful, but no doctors. We actually just saw the medical oncologist today, one week after her getting a five minute phone call that changed everything. But, luckily, during that waiting, we had time to find some amazing groups online, people who are already going through this or have survived this and other cancers. I'm sure I'll post more about them later, but everyone we've talked with has been an amazing resource. I'm almost glad we had the time to do the research, because, although neither of us know nearly enough about this thing, we know more, we knew what to expect from the doctors, we know a little bit more about what to expect from treatment...

Treatment: Dr. Wright, the oncologist we saw today said that he is estimating about 4 months of neoadjuvant (pre-surgical) chemo, followed by the surgery and recovery time, followed by 4 more months of chemo, or more, depending. This is a slightly lower estimate than we were expecting, but we are going to Sloan-Kettering, in NYC, next week for a second opinion, which Dr. Wright is encouraging and completely comfortable with. I really like him, not only because he looks like Dr. Kevin Fitzgerald from emergency vets, but because he has an amazing bedside manner and is soft spoken and doesn't seem to have a god complex and dealt just fine with me, which I was worried about. But he suggested she start the chemo on the 31 of may, as to not interfere with the S-K trip next Friday.

She will be treated with adriamycin, cisplatin and methotrexate. The first round of chemo will be just the adriamycin and cisplatin and it will require her to be admitted for at least 2, probably 3 days, as a precaution to a negative reaction...assuming she reacts ok, hospitalization shouldn't be required for later adria/cisplatin treatments, they can be done out-patient. The methotrexate, however, requires a hospital stay every time, because they are using a very high dose, which we were expecting, and it requires a large amount of fluids to be given in conjuction with the drugs and also they need to monitor the levels of the drug in her system and administer an appropriate amount of another drug to counteract the tissue damage the methotrexate can cause (i have the name of this drug written down somewhere, but i don't remember it).

so thats all i can write right now. i am so exhausted already, and scared out of my mind. I hate waiting on treatment, but we need to talk to the people at Sloan first, so that they can work witht her team up here. i hate waiting period. but i know that is what most of this year will be, most of the next several years, waiting.