It seems so strange to be feeling as well as I am today, and have a week of treatment down. I DID have my chemo down days Saturday and Sunday but all they consisted of were tiredness and feeling "full" in my stomach. I felt so bloated up that I didn't want to or couldn't eat or drink. That created its own problems as I am needing to keep my weight ON instead of letting it drift away because of not eating. By that time, "chemo mouth" was in full swing, and it is also hard to eat when everything tastes like you're eating spoons. Cisplatin, (my all day chemo drug), is made of platinum, so I get a metal taste in my mouth. Radiation is also supposed to alter my taste and the doctor said today, soon everything will taste like dirt. My mouth doesn't really taste like dirt now, it tastes more like charcoal. But, it is getting better. I can taste salty things today and the potato soup, (with extra meat) and salted tomatoes went down well.
And, so, I've started week two.
The same old drill, climb on the table, get snapped in place and away we go. This time however, it took a lot longer, they took some more pictures of me. It's a good thing those aren't being published, because no one looks good lying on a table with their eyes closed. Those just go into my medical file which is three inches thick and getting thicker every day.
Since this is Monday I have to be weighed, and then I saw the doctor who was gone all last week to a conference. I thought he was on vacation, but no, he's going on vacation NEXT week. Thankfully, I really, really like his Nurse Practioner, she is thorough, and she is the one who looks after my basic health, which is why she had a conniption when I lost 5 pounds over the weekend. Of course, it is her job to keep me from losing strength and not getting enough calories is a sure way to to do that. They threatened me with the feeding tube again, so I REALLY need to find some of those 5 pounds back in the next couple of weeks, preferably before Thursday, when they weigh me again. Here, I've spent half my life trying to take pounds off, and now, as they tell me, "this is the only clinic where weight gain is pushed.", I need to be eating extra protein, extra fat, just whatever I want. "This is no time to be eating spinach!" the doctor says. I still think I should put some in my shakes.
So, I'm supposed to be eating every two hours, swishing that really expensive mu-goo, four times a day, (then an hour of no eating or drinking, after that), drinking loads of water, plus all the other things, sinus rinses twice a day, fluoride at night, brushing teeth three or four times a day, AND, AND, well, have time to talk on the phone, see people, get office work done, and have naps. I think I need a schedule.
I already have a housekeeper for awhile, thank goodness for my mom.
So, I'm supposed to be eating every two hours, swishing that really expensive mu-goo, four times a day, (then an hour of no eating or drinking, after that), drinking loads of water, plus all the other things, sinus rinses twice a day, fluoride at night, brushing teeth three or four times a day, AND, AND, well, have time to talk on the phone, see people, get office work done, and have naps. I think I need a schedule.
I already have a housekeeper for awhile, thank goodness for my mom.
It was good to see the doctor anyway, he told us some more about how they were doing the radiation. They are aiming the most powerful shots in the left sinus area where the tumor was mainly found. As I have 200 Centigrays every time I go in, after six treatments I'm up to a level of 1200 cg total, and I have to have 5000 cg total. If you do the math, that is a 1000 cg every week, and will take 5 weeks. After that, I get a "boost" of a 1000 cg over the last week, concentrated in the area where the tumor was, i.e. the left sinus area. There is the total of the 6 weeks of radiation. This is standard procedure to do it this way. Radiation really isn't a "weekly" or "daily" thing, I am going to get the amount of radiation prescribed, a day missed, is a day made up. And it accumulates. Just because right now all the pain I have is in the bridge of my nose, and as long as nobody is poking it, I can ignore it, it seems like not much is happening. However, the doctor assures me that as the level of radiation rises, so will my discomfort.
So, now is the time for all good men to come to the aid of....well, anyway, it is time for all radiation patients to eat up!! And it is HARD work, let me tell you.
P.S.
The results of my scans are clear, which feels really, really, good right now.
P.P.S.
Sadly, I removed an unkind comment from a previous post. It is the first time I've ever had to do that. I don't know the person who commented, I don't know exactly what she was getting at. It simply may have been spam. At any rate, it is gone. I apologize to any who may have seen it.
P.P.S.
Sadly, I removed an unkind comment from a previous post. It is the first time I've ever had to do that. I don't know the person who commented, I don't know exactly what she was getting at. It simply may have been spam. At any rate, it is gone. I apologize to any who may have seen it.
11 comments:
I won't leave an unkind comment! I'll leave a nice comment on how I appreciate your spirit through this ordeal. Eat up! Get your rest! And send this nasty C off to oblivion! Still think of you lots.
You are so brilliant Shelley, to keep all this jargon straight! It leaves me thinking, Huh? What? ... but I do understand the eat up part. Life is odd in a lot of ways. When you need to pig out, it tastes like SPOONS, of all things! Oh, how I love your way of putting things into words. But bleh...a metal taste in the mouth is most unpleasant! I am so happy your Mom is there and so so SO happy you scans were clear. Thinking about you nonstop!!!!!
Shelley,
Love your positive attitude. No time to feel sorry for yourself!! So glad to hear the scans looked good. I enjoy reading your posts so much; even going through what you are having to go through, you are so inspiring to me. Thankful your mom can be here to help out. Keep fighting girl!!
That last one was from me. Sorry I left out my name! Holly
You are quite a trooper. Glad you are doing as well as you are. Thanks for keeping us updated so we can follow your experience and pray for you to keep full of courage~
Arrgh, this new laptop I have has the mouse pad set to "click when I hover" so I deleted the last comment by accident, and of course, I can't figure out how to fix the mouse pad. I'll have to email my computer guy.
I just love popping in to see how you are both here & at your house :)
So good scans are clear!!
You inspire me to be MORE!!!
love yor attitude, your spirit & just plum love YOU!!!
thinking of you daily :)
Wow! And I am SO glad you have your mom there to help. That is huge!! Stay focused on WELL! SO glad the scans were good!
Magnificent! (As usual. :-P )
Wouldn't you know it...the one time your scale needs to go up. :-) Hope your appetite comes back a bit so that you can keep some healthy weight, to help you through it all! Still thinking and pulling for you!
Thinking of you. Also our thoughts go to www.denleynorman.blogspot.com as this is the one year anniversary Denley passed away. Such a good reminder that all of us are fighting some kind of battle.
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