Monday, May 9, 2011
Patience
Normally, I am a pretty patient person when it comes to customer service type stuff. If an order at a restaurant is taking a long time, usually I won't complain (it's the "spit in your food" thing here!). Or, if a person checking me out is taking forever, I will stand quietly and maybe give her a look or smile to let her know I would like to get going. But I am a believer that if you get bad service you should be compensated in some way. That's why when I got an order of chicken wrong once and got all the way home before I realized it, when I drove back to the restaurant and went inside, I politely asked for a dessert to compensate for the gas it took to correct their mistake. What could they say? It was yummy, and all the better because I stood up for myself. But that was a rare instance, normally I assume the person is doing their best and cut them some slack, especially if they are pleasant about the whole thing.
But as I sit right now waiting for a prescription to be refilled, I find that I am losing my patience. It all started this morning when I arrived for my chemo treatment. I got there at 9am. My nurse had me prepped and ready in no time, all we were waiting on was the drugs. There is usually a chemo pharmacist on the floor who is outstanding! Her name is Suzanne and she is sharp as a tack!!! She knows everything about everything chemo! She's the one who gets the drugs ready and I have never had to wait. They are almost always ready before I am ready. Well, today Suzanne was not there. Apparently, she is not ever going to be there again. Something about working relationships, management . . . I don't know. I just know that I was the first patient to arrive that morning and I did not receive my chemo drugs until 11:10. I sat for 2 hours waiting and waiting. And when the bag did arrive it was only the Avastin, the Abraxane was still not ready yet. Usually, I get the Abraxane first and I like that because it means I can use my cold caps before they get too thawed. Well, not today! I asked my nurse what was the deal because she was as frustrated as me. She explained about the new pharmacist situation. I asked if this new situation was permanent. She said most likely. That doesn't make me happy. I don't know if I have enough patience to deal with a 2-hour delay every Monday! That's definitely going to eat into my patience bank!
So, that was this morning. Now it's 5:30 and my patience is being tested again. While I was waiting on the chemo drugs, I put a call into my dr for a prescription refill. It's for Lortab, a narcotic that helps with my cough and chest pain. I had to leave a message (of course!) and heard the recording say the Rx would be called in by the end of the day. John went to pick it up at 4:00, no Rx . . . no phone call, no message from the dr, nada! I called the dr back and had to leave another message with the same lady. After a half hour I called the pharmacy to see if it had been called in. Can you guess? No phone call, no message, nada once more! I called the dr back and after waiting for 10 minutes, she finally came to the line. I explained my situation and she transferred me back to Beth, the nurse practiioner whom I know very well. But once again, I had to leave a message. It is now 5:30 and I have heard nothing from no one. No return call to say it was called in, no pharmacy call to say it's ready, nada. And now my patience is NADA!
Maybe I'm just grumpy. With the weather getting warmer, my hot flashes are getting worse which makes me irritable like PMS. Maybe I just need to relax and chill out with a glass of tea. Writing this post has helped some, getting it all out of my system. Maybe I can take Tylenol tonight with my cough syrup (which I hate!) and that will be enough to get me through til morning. Maybe tomorrow, I'll feel up to taking up the fight for my drugs! I just wish all this could be easier. I'm probably spoiled by now - all the dinners brought to my door, all the offers to take my kids off my hands, all the housecleaning, all the monetary gifts that we've put to good use, all the help I can't even remember it all to list! It's like I'm not getting the princess treatment from the medical community like I've gotten from friends and family and I'm having a little tantrum about it! Oh well, like all tantrums, ignore them and they'll go away.
One good thing that's cheering me up is the fact that I have off for the next two weeks!!! YAYYYYY!!! Today was the third dose in this second round, so that means I don't start the third round until May 23! I will have to go tomorrow for my neupogen shot and I'm praying that it doesn't give me the fever like last week. If so, then I will definitely be fighting for my drugs!!! I'll be down at the dr office pitching a Bannister fit (that's my mom's side of the family!) including pots and pans thrown and words screamed at the top of my lungs from the uncensored list!
Yep, I'm grumpy - see how I went from feeling positive to cussing out my doctor in one short paragraph! Time for that glass of tea.
But as I sit right now waiting for a prescription to be refilled, I find that I am losing my patience. It all started this morning when I arrived for my chemo treatment. I got there at 9am. My nurse had me prepped and ready in no time, all we were waiting on was the drugs. There is usually a chemo pharmacist on the floor who is outstanding! Her name is Suzanne and she is sharp as a tack!!! She knows everything about everything chemo! She's the one who gets the drugs ready and I have never had to wait. They are almost always ready before I am ready. Well, today Suzanne was not there. Apparently, she is not ever going to be there again. Something about working relationships, management . . . I don't know. I just know that I was the first patient to arrive that morning and I did not receive my chemo drugs until 11:10. I sat for 2 hours waiting and waiting. And when the bag did arrive it was only the Avastin, the Abraxane was still not ready yet. Usually, I get the Abraxane first and I like that because it means I can use my cold caps before they get too thawed. Well, not today! I asked my nurse what was the deal because she was as frustrated as me. She explained about the new pharmacist situation. I asked if this new situation was permanent. She said most likely. That doesn't make me happy. I don't know if I have enough patience to deal with a 2-hour delay every Monday! That's definitely going to eat into my patience bank!
So, that was this morning. Now it's 5:30 and my patience is being tested again. While I was waiting on the chemo drugs, I put a call into my dr for a prescription refill. It's for Lortab, a narcotic that helps with my cough and chest pain. I had to leave a message (of course!) and heard the recording say the Rx would be called in by the end of the day. John went to pick it up at 4:00, no Rx . . . no phone call, no message from the dr, nada! I called the dr back and had to leave another message with the same lady. After a half hour I called the pharmacy to see if it had been called in. Can you guess? No phone call, no message, nada once more! I called the dr back and after waiting for 10 minutes, she finally came to the line. I explained my situation and she transferred me back to Beth, the nurse practiioner whom I know very well. But once again, I had to leave a message. It is now 5:30 and I have heard nothing from no one. No return call to say it was called in, no pharmacy call to say it's ready, nada. And now my patience is NADA!
Maybe I'm just grumpy. With the weather getting warmer, my hot flashes are getting worse which makes me irritable like PMS. Maybe I just need to relax and chill out with a glass of tea. Writing this post has helped some, getting it all out of my system. Maybe I can take Tylenol tonight with my cough syrup (which I hate!) and that will be enough to get me through til morning. Maybe tomorrow, I'll feel up to taking up the fight for my drugs! I just wish all this could be easier. I'm probably spoiled by now - all the dinners brought to my door, all the offers to take my kids off my hands, all the housecleaning, all the monetary gifts that we've put to good use, all the help I can't even remember it all to list! It's like I'm not getting the princess treatment from the medical community like I've gotten from friends and family and I'm having a little tantrum about it! Oh well, like all tantrums, ignore them and they'll go away.
One good thing that's cheering me up is the fact that I have off for the next two weeks!!! YAYYYYY!!! Today was the third dose in this second round, so that means I don't start the third round until May 23! I will have to go tomorrow for my neupogen shot and I'm praying that it doesn't give me the fever like last week. If so, then I will definitely be fighting for my drugs!!! I'll be down at the dr office pitching a Bannister fit (that's my mom's side of the family!) including pots and pans thrown and words screamed at the top of my lungs from the uncensored list!
Yep, I'm grumpy - see how I went from feeling positive to cussing out my doctor in one short paragraph! Time for that glass of tea.
Thursday, May 5, 2011
Neupogen is evil
Tuesday afternoon I had to go for my neupogen shot. It keeps my white counts from bottoming out and I get it after every treatment from now on. So far it hasn't been a big deal, just a few aches that a Lortab can fix. But this time, I got the Neupogen fever. It only got up to 100.8, but I thought I was dying! My head was pounding and every time I had to cough, I thought my brains would burst through my forehead. My legs, back, chest, all hurt. Like I'd been tossed around in a car wreck. The dr. said to go to the ER if the fever got above 101, something about a chance of infection somewhere. Thank goodness, it never got that high. I'm still keeping my vow of never going back in the hospital! Finally, last night I slept really well and feel great, er, normal today. And mom brought me some watermelon yesterday, so I am HAPPY!!
Sunday, May 1, 2011
Meal calendar update
Since the chemo is treating me pretty well and I'm not having as much down time as before, I've redone the meal calendar. Now the only days I would appreciate dinner is on my treatment days. I went ahead and filled it out til the end and it looks like I will be done by August 29! Prayers that it will be the real end of it all!!!
For those of you who have already brought dinners, I wish I could repay you somehow. You can't know how much it is appreciated. Whether it was an actual meal, or a gift card, you have been a lifesaver! I wish I could thank you enough!! Just know, that I will be sending a special prayer of recommendation for a VIP spot in heaven for you!!
And the cleaners came! Some very special parents of my students gave me a gift certificate for cleaning. But I've been gathering stuff around the house for an upcoming yard sale (I know, not smart!) so the house has been really cluttered and I've been waiting to set up a time to have it cleaned. Well, John moved everything out to the garage so I made the call last week. Ahhhhh, it still smells lovely!!
So, yeah I'll be having a yard sale soon. I'm not rushing into it. I'm taking my time setting everything out and pricing it, so maybe we'll be ready by July! I still get really winded and don't have any stamina. But since I'm not working now, I've got the time . . . and could use the income!!!
Enjoy the day everyone!!
For those of you who have already brought dinners, I wish I could repay you somehow. You can't know how much it is appreciated. Whether it was an actual meal, or a gift card, you have been a lifesaver! I wish I could thank you enough!! Just know, that I will be sending a special prayer of recommendation for a VIP spot in heaven for you!!
And the cleaners came! Some very special parents of my students gave me a gift certificate for cleaning. But I've been gathering stuff around the house for an upcoming yard sale (I know, not smart!) so the house has been really cluttered and I've been waiting to set up a time to have it cleaned. Well, John moved everything out to the garage so I made the call last week. Ahhhhh, it still smells lovely!!
So, yeah I'll be having a yard sale soon. I'm not rushing into it. I'm taking my time setting everything out and pricing it, so maybe we'll be ready by July! I still get really winded and don't have any stamina. But since I'm not working now, I've got the time . . . and could use the income!!!
Enjoy the day everyone!!
Friday, April 29, 2011
Cancer level is coming down
I found out today that my CA125 is now at 182. Remember, 35 and under is normal but mine had gotten up to 353. It's good to know the chemo is working. I'm just going to keep praying that this trend continues and it gets lower and lower!
Today I went on a field trip with Rachel Rose's class to Elachee Nature Center in Gainesville. I've been there before and knew what I was getting into as far as the long nature hike. But I went anyway. Rachel Rose was so excited to have me there. But I have to admit, it just about killed me!!! By the time I got home and took my medicine, I was practically paralyzed on the couch! I've never been much of a hiker anyway. Now I can rest assured, cancer has not changed me there in the least - not so much the naturalist!
So, I am going to bed now. They are replaying the royal wedding on GPB and it does look absolutely beautiful. But I've now seen the dress, seen the kiss, I'm done. Goodnight, everyone!!
Today I went on a field trip with Rachel Rose's class to Elachee Nature Center in Gainesville. I've been there before and knew what I was getting into as far as the long nature hike. But I went anyway. Rachel Rose was so excited to have me there. But I have to admit, it just about killed me!!! By the time I got home and took my medicine, I was practically paralyzed on the couch! I've never been much of a hiker anyway. Now I can rest assured, cancer has not changed me there in the least - not so much the naturalist!
So, I am going to bed now. They are replaying the royal wedding on GPB and it does look absolutely beautiful. But I've now seen the dress, seen the kiss, I'm done. Goodnight, everyone!!
Monday, April 18, 2011
Dr. appointment
I had my regular appt with Dr. Salmieri today and I'm feeling pretty good about everything. He agreed I should wait one more week before my next treatment to give my counts a chance to come back up. From now on, I'll get a Neupogen shot after every treatment. This will hopefully prevent my white blood cells from dropping too low.
He explained that the reason the tumor board recommended this line of chemo (Avastin and Abraxane) was because the cancer was now in my lungs. He said it's more of a last line of defense, but they wanted to go ahead and give me the big guns now. There still other chemos that I haven't tried yet, Topotecan and Doxil, to name a few. But I'm hoping this current round is going to knock it all out once and for all!!! AMEN!!!
I complained to him about the cough and the breathlessness. He said that goes along with the lung issues. Dr. DeMarco, the lung dr., tried some different inhalers and breathing treatments, but none really worked that great. I guess it's just something I'm going to have to manage on my own. For now, that means frequent breaks to catch my breath and just plain not doing alot. I really miss working in the yard. May sound crazy, but I love yardwork!!! Trimming, edging, planting, weeding - my idea of fun! I am still going to put some annuals in my planters, not going to let cancer prevent my botanical garden on the deck!
Mom has been staying with us when John is away, even though I am able to manage pretty well on my own. I try to tell her so, but she insists on staying. And who am I to turn down free help!!! God bless my Mama!!
Gotta run get the girls off the bus now!
He explained that the reason the tumor board recommended this line of chemo (Avastin and Abraxane) was because the cancer was now in my lungs. He said it's more of a last line of defense, but they wanted to go ahead and give me the big guns now. There still other chemos that I haven't tried yet, Topotecan and Doxil, to name a few. But I'm hoping this current round is going to knock it all out once and for all!!! AMEN!!!
I complained to him about the cough and the breathlessness. He said that goes along with the lung issues. Dr. DeMarco, the lung dr., tried some different inhalers and breathing treatments, but none really worked that great. I guess it's just something I'm going to have to manage on my own. For now, that means frequent breaks to catch my breath and just plain not doing alot. I really miss working in the yard. May sound crazy, but I love yardwork!!! Trimming, edging, planting, weeding - my idea of fun! I am still going to put some annuals in my planters, not going to let cancer prevent my botanical garden on the deck!
Mom has been staying with us when John is away, even though I am able to manage pretty well on my own. I try to tell her so, but she insists on staying. And who am I to turn down free help!!! God bless my Mama!!
Gotta run get the girls off the bus now!
Tuesday, April 12, 2011
Chemo cancelled
I did not have my treatment yesterday because of low blood counts. In fact, they are not planning on making it up and to keep me on my schedule, I won't go back until the 25th, two weeks! Makes me kinda nervous to go that long since the chemo is the only thing controlling the cancer from spreading. I called the nurse practitioner, Beth, to express my concern. She said it would be fine rather nonchalantly. I was pretty frustrated. I will see Dr. S on Monday for my regular appointment. I'm looking forward to talking with him about lots of things!
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