Well, it’s been a week. To make a long story short, last week’s Navelbine just kicked my butt. I felt awful Thursday, Friday, Sunday and Monday. Saturday I got some sort of weird reprieve that let me play Mario Brothers on my daughter and son-in-law’s Wii when they came up for a visit.
Again, I find it hard to describe. Gastrointestinal symptoms seem to be at the center of it all with epigastric pain, bloating, cramping, nausea, early satiety and loss of appetite. I also had a tremendous increase in my weakness and shortness of breath with even the slightest exertion. And, again, I just could not get comfortable.
I called my oncologist on Monday and cancelled yesterday’s and next week’s Navelbine. I have an appointment on August 4, after we get back from Texas, for Zometa and Navelbine and we’ll go talk then, but at this point I’m not inclined to accept any more active treatment for this cancer. I presume that these symptoms are from the Navelbine and it’s simply not worth it for a treatment that is most likely not to do anything for me and at best might extend my survival by a month or so. If these symptoms were from the cancer, then the Navelbine wouldn’t be working anyway, so why keep taking it? But every day I feel a little better, so it’s pretty clear Navelbine is the culprit.
This is a difficult decision. To some it feels like giving up. To some it feels like accelerating the inevitable. To me it feels like claiming the last vestiges of feeling less than awful that I can claim. Because this decision is difficult and is processed in different ways by the people I love, I also requested a hospice referral and the case manager will come out to meet with my husband and me tomorrow afternoon.
South Central Connecticut is actually the birthplace of hospice in America and they have a very strong program here. They have a program called CanSupport for people still on active treatment and that’s what we’re enrolling in at this time. But just the term hospice is a loaded one and I feel for everyone who has to process that.
Meanwhile, life goes on and is as busy as ever. Tonight, after work, my daughter and I are driving to my cousin’s house in Pennsylvania to crash before I deliver her to New Bolton Center early Thursday. I’ll drive back in a leisurely fashion and see the hospice case manager late tomorrow afternoon. I have another clinical shift on Friday and a leisurely day (except for laundry!) on Saturday then Sunday I take an early train to Boston to pick my other daughter up from one volleyball camp and drive her to another one. Then home, clinical shifts Monday and Wednesday next week and then we’re off to Texas on Friday.
Think good thoughts to hurry away the last of the nasty Navelbine effects so I can enjoy life for a while. Thank you all again for keeping me in your thoughts and prayers.
Link to blog: http://www.nationallungcancerpartnership.org/blog/?p=267