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Showing posts from September, 2018

No News

While not much has changed medically, I feel my whole world has changed over the past few weeks. The routine is the same; wake up, take meds, and wait for whichever hospice person is coming that day. The boredom continues. The fact that it probably won’t change is setting in....big time. Monday is blood day, Thursday’s are results day. The tears are coming easier and more frequently, I’m tired of needing help to do anything and everything. It’s getting harder to stay positive. Reagan’s Birthday was this past Sunday. This was my second big goal. It was so bittersweet......I made it, but it’s most likely the last one I will. So I’m giving myself a reprieve of being all perky and optimistic and I’m taking some time to process my emotions and just be sad. Hopefully this will shake soon. Next goal is to see Chris in 2 weeks!

Bored

In all honesty, this hasn't been a great week, Neither physically nor emotionally. Everything is  changing and I can't keep up with it all. There's the physical side of things where I can see my body deteriorating daily. I can barely move my legs, everything is swollen and bloated and, in other words, completely disgusting. I can't dress myself, I need Matt to help with everything, and it's become both comforting to know I have him and yet so embarrassing. No matter how long you've been married, or with a partner, it's definitely still not a look you want them to see in your mid 40-s. So there's that reality I can't escape. The appointment with Dr. Adler went in a similar pattern to the past few weeks. The bilirubin went up to 4.8. That's not a huge increase but big enough to not allow for chemo again. Life is getting boring....I lay here and watch "Grey's Anatomy," read, try and blog and just try and get through the day. Emotiona

Holding Steady

Another week has past and things have largely remained the same. Hospice came Monday to check all my sores (namely the hole in my  forearm), and take blood. They make sure I'm set for meds for the week and off they go.  Then my home health nurse comes in and does a wonderful sponge bath that I quickly get over my embarrassment from. Thursday is the big Dr. day where we get the blood numbers and are told the fate of my imminent future. This week, the bilirubin came down again!!! It isn't low enough to do chemo but we're getting there. It went from 4.4 down to 3.5! He said if it gets below 3 we would discuss chemo. I'm soooooo close. Except I am scared to rock the boat. I've been doing "ok" lately and don't want that to change. But we all know I'd do anything to hang on as long as possible. Emotionally the past two weeks have been really hard on me. I've fallen, pretty badly, a few times. In fact, Friday night my head played ping pong agains