Thought I'd post a quick update on the goings on around here ...
Mom is on week two of the third chemo. This is a once pr week infusion. She seems to be tolerating it MUCH better than she had the Nexavar or the ___________ (I cannot, for the life of me, remember the name of the last stuff she was using ... )
At any rate, the nausea has been mild and manageable. She's been able to eat and drink, keeping herself hydrated, which is a HUGE issue. She must be able to keep herself fed and hydrated to continue on the chemo. So far, the biggest side effects seems to be the extreme tiredness, which lasts several days, and then hopefully you get a few really good days, before it comes back around again. Sandie was here last weekend and mom was able to go out for a while, they made their way here for a while and mom even managed Target for a quick trip.
They would like to get her to 8weeks before they re-scan to see if it's making any difference on the tumors at all ... We know that it will not have an effect on the tumors in her bones, but we're hoping for good results for the tumors in the soft tissues and a cessation of the production of the tumors, which starts in the blood vessels ...
Epithilioidhemangeoendothelioma (EHE) is a benign cancer, that is to say, that this particular cancer won't kill you ... but its byproducts will ... tumors are found in both bone and soft tissues, mom's got them in her lungs ... you don't really want ANYTHING in your lungs ... we've heard of them in the liver and kidneys as well ... mom also has bone tumors, her spine being the most effected by them. She has increased tenderness and pain in her lower spine. Radiation may be an option for some of those, but that's not been proved to be effective, (nor has the chemo for the soft tissue tumors) and the radiation regimen is GRUELING, verging on, no, it IS, inhumane ... as are most of the tests and treatments for cancer in general ... much less if you've got a cancer on a handful of people in the world have ...
Mom's on oxygen most of the time now and even then experiences shortness of breath with nearly any exertion ... Today is Saturday, she should be coming around to a few good days ... Tuesday is chemo day and then by Thursday she's feeling exhausted and sleeping alot ... It beats seeing her look like she may not get a next breath like the other stuff made her ... We're only two weeks in on the new med so it's still early to decide that this chemo will work for her, but so far so good ...we'll take it!
The Sophmore! School started Wednesday with a bang. She's totally happy to be back and her schedule is just what she wanted.
I think she enjoyed everyday of her summer vacation this year. Next year she'll
be among the working. She's looking forward to getting a job, just a few more months til she's 16 and then I think she will start looking for something part time.
Tiff & Sierra at the end of last school year. Sierra turned 16 yesterday. They partied all night at Sierra's house and this morning went to Seattle so that Sierra could get her bellybutton pierced. I wonder how that all went? Tiffini was 13, and we had it done by a friend to get around the "you must be 16 to have this done even if you have parent permission" ridiculousness ... I'm sure no big tattooed biker is going to sit on top of Sierra while she lies on a bed in the back of a friends mobile home yelling thru the whole thing ... but it happened once...so who knows?? hahahaha
The remodeling is all done. Still have some painting to do ... haven't been motivated to do that as yet ... As I stood in the kitchen the other night, it finally came to me ... I've been waiting ... I knew it would come ... I just had to have some patience ... the revelation? How the furniture should be arranged ... I knew this was just temporary, and I'd like to also use that as my excuse for failing to adorn the walls as yet ...
Now, I must muster the energy, strength and motivation to move just a couple pieces of furniture ... of course that means emptying a bookshelf and dealing with cords and such from moving the TV and all that's attached to that ... I'm hoping to get that done this next week ... THEN I will put stuff on the walls ...
I had another band fill on Tuesday and I think I may be at the "just right" restriction. I'm definitely nice and tight now, but am able to eat most anything I want. I have noticed that I do not tolerate any kind of fast food ... I tried some McDonalds fries and it was a painful experience, not to mention that they layer of grease or whatever it was that made that shit taste good and go down w/o issue is gone now ... I couldn't swallow those damn things, they kept getting stuck in my throat and they didn't taste like anything I remember liking so well ... oh well ...
Processed food seems to cause more issues than anything else .. my diet is almost entirely whole, fresh, unprocessed - minimally processed foods ... high in protein, low calories and carbs ... I very rarely drink anything other than water or iced tea ( no sugar/no lemon) ...
For all that, I am down 80 lbs ... so if I can't eat McDonalds fries or white bread the rest of my life ... it's all good ...
Well, Sue has tried, unsuccessfully, to get me out of the house today ... sigh ... We made a couple different plans for tomorrow ... I'm not a good call me ten minutes before you wanna leave kind of person ... I have to talk to the other voices a while and reassure them that it's all going to be ok ... that requires about a days notice ... they are very hard to convince and usually end up needing to be pharmaceutically subdued ... I guess some things never change ... hahahaha
Enjoy your day ... whatever you do ... or don't do ...
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