I will be running in the Run for the Cure this weekend in support of Cancer research. Although Kathleen has duodenal cancer and not breast cancer, it doesnt really matter. The support here will help people like her in similar battles. And frankly, the medicine and knowledge engaged in Kathleen’s current fight has been made possible by people years ago, making similar donations. So please donate in Kathleen’s name. There are a lot of people afflicted with this awful disease now and in the future. You can click on this link to go to her site at the run for the cure and make a donation in her name.
This past week has been a pretty tough one. The CCAC decided (without asking us) we needed more specialized care at home, so they changed the nursing team on us. This partially seemed automatic (due to the new diagnosis now having distant metastatic spread), and partially because we were just punted to a new case worker. We generally dont interact with the CCAC directly, so a new case worker didnt really matter. But the change meant losing Maggie, our “super nurse.” I would say all the nurses we have had were at the very least good, and some great. Maggie however, was an 11/10. Resourceful, skilled, professional, a problem solver, experienced, kind, friendly and just a really great person to have in our lives, not to mention trust with Kathleen’s life. So to lose her and go to someone else was tough and felt like we lost a leg in our supports. Plus, as part of filling out all the insurance forms, we got to look at her oncologists’ reports. Although technically there was nothing new in them, to see it all together in black and white in 6 detailed pages… Well, it was a real kick in the gut. Combined with the nursing change, where the case worked called me (not Kathleen as if she was incapable of speech) to inform us after the fact that we were now getting a Palliative nursing team.. HANG ON, PALLIATIVE?!?! Yes, it felt like they were one step away from “Grave or Cremation, sir?” ..Technically I was told Palliative is not end of life, its… Well, here is the Wiki def http://en.wikipedia.org/wiki/Palliative_care. Whatever. You would think they would be a little more sensitive about throwing around a word that in the vernacular means end of the road even if technically its not… OK, so they didnt mean it that way, fair enough. But all these little things made for a very tough emotional package to digest this past week. Some days it all seems so dire, some days not…
Speaking of Roller Coasters, on the somewhat plus side, we heard from Kathleen’s insurance agency that they will pay for her Avastin treatment. This is a different type of chemo drug that works by stopping new blood vessels from growing. Its good in 2 ways that its covered. One, it costs $40k. So for us not to have to pay that. Well, thats nice. Two, the fact that her insurance will pay for it means that they think there might be some benefit. As this is an off label treatment, they could have said, “well, she is a gonner, so we are not going to waste the forty thousand on someone who is going to die soon anyways.” OHIP only covers drugs which have a demonstrated efficacy. As there are no studies on Kathleen’s cancer, no one really knows if it works. But since this is lumped in with colon cancer, the doctor thinks its reasonable to try…. So, just as she was getting used to the FOLFOX side effects, there will be a new one to deal with and she will push on forward…. It feels like we are skipping to Mordor.
Although I did do most of the eating, it was great to see Kathleen pick at some of her food at her fav Thai restaurant .