Yesterday's infusion went well. Listened to my mp3 player for a few hours while the meds dripped at their prescribed rates into my port to go after some more cancer. My benadryl high was tolerable. I didn't feel like passing out drunk from it and its effects wore off a little faster. We were there from 1:00 p.m. till we shut the place down at 5:00 p.m. And I got a present delivered. Elizabeth at the Palace and her husband bought us a Scene It movie trivia game for all the cooped up time I have lately. Awesome! I love this game, but didn't own it. Thanks Elizabeth, you and Cody Rock!
As we left the Cancer Center I called in an order at Mr. Gatti's. I was starving and needed pizza. And it was a good call. Hot pizza at the time just before chemo steals my taste buds for another week.
The nausea started about an hour after we got home. And instead of taking the evil phenergan, I took half a tablet of Unisom and a vitamin B6 tablet, and you know, I think it helped. Didn't get rid of the perpetually queasy, rolley, sick feeling. But it did ease it. And best of all there was no Parkinson's-like body jerks and shakes like with the phenergan. So that is good news. I took Ativan at bedtime to sleep and when Jackson called out at 4:45 a.m. I had to wake David up to check on him cause I was too drugged to do it. Could only stumble. So note to self - no long-term Ativan usage. Chemo day plus one or two only.
Today was not my best day. I guess I am just tired and overwhelmed and unlike the last three rounds of chemo I had Jackson at home. David's folk have been so awesome in taking him for three days on chemo weeks, but this time they have family from Germany with them and it was understandably not possible this time. And I have had help. But even though my mom and Tonya and my Dad have been here to help, it is still hard. You can't escape the two-year-old need and the accompanying whine. And I love him dearly but he isn't able to deal with 'no' and can't comprehend that the whole world doesn't revolve around him. And all he wants to eat is candy and chocolate and other junk food and I know he is hungry, but he just won't eat jack. But cupcakes, he will eat.
Sigh. Motherhood is hard. Motherhood on chemo week is enough to bring on the tears. And today there have been tears. Just too much. I got overwhelmed.
And this was the last straw:
My doc decided with my blood count blowout last week and the subsequent rescheduling of chemo, I needed to get the Neulasta shot this time. But the Georgetown Cancer Center is closed to patients today because they don't have a doc on duty there. Apparently you can't push chemo drugs without a doc in the building. This happens occasionally, but not often in Georgetown. Point is that I had to go to the North Austin branch to get my Neulasta shot. No big deal, really.
Except when I got there at 5 til 1:00 the cold career receptionist who finally came to the window to talk to me said that the person was at lunch so I would have to wait 5 minutes. Ok. Fine. I took the time to look around the tiny, sparse, crappy lobby of this branch. No fish tank. No free hat basket. No bar with water, juice, coffee, crackers and the occasional hand-made cookies from hospital volunteers. Not what I am used to in luxurious G'town. After waiting 15 minutes I went back to the humanoid at the window. "Is my person back from lunch?" sigh "I'll go look."
My person was indeed back. I heard her complaining through the window. "Who is this? I don't have a chart?" "She's from Georgetown." "Oohh" No smiles, no warmth. Just bitchy blahs. My person, who didn't introduce herself of course, led me back to the meager infusion area for my shot. I felt sorry for the patients who were getting their chemo in this stuffy, small, cramped and devoid of human warmth excuse of a cancer center. I only saw 4 chairs, though there may have been a few more around the corner. And there weren't chairs for family members. The patients were sitting by themselves. Georgetown is so open and nice and full of windows with foliage everywhere. This place was depressing.
So the nurse proceeded to give my my shot. It hurt. Another one-minute-grit-your-teeth experience that I normally handle stoically. But today, inexplicably, or maybe not, I started to cry. Silently. Just couldn't keep a few tears from escaping. It wasn't the pain, or it was, but it was also the last few days of being anxious for chemo and rescheduling and getting blood draws and failing then passing. Then chemo and coming home to be sick and Jackson and now this cold, crappy cancer center made me feel unimportant.
The nurse noticed my tears and said something like "Brought the tears to your eyes, did it?" Yes. Yes ma'am it did.
And I could not stop crying all the way home and then off and on all afternoon. My poor dad is not always comfortable with crying women. But he totally understands that I am over medicated with poison and then the drugs to keep me functioning while being poisoned and that I am just overwhelmed and allowed to have an emotional release. So there. I feel better already.
Dad and Mary are going to pick Jackson up at 9:00 tomorrow and bring him home around 6:00 p.m. so that David and I can have the day to ourselves. We may do something, we may not. But it will be nice to have a break from the all-consuming task of balancing the small boy's M&M intake with vegetable.
A blog about cancer, motherhood, theatre, the politics of healthcare and life in general.
Friday, September 28, 2007
Thursday, September 27, 2007
T'was the night before chemo and all through the house...
It is late. Well, early. After midnight. I was in bed, but got up. Not able to fall asleep. Too much on my mind. I am nervous; anxious about this round of chemo. I don't know why. I have done it three times already. I should be a pro. But I guess the first night of the last round was so awful that I am scared of this one. Plus I lost a few days to foggy-chemo-druggy-amnesia. And I didn't like it one bit. So I am nervous with a queasy stomach tonight. Figured I'd get up and write a little bit, get it out of my system so I can go to sleep.
I really, really, don't want to go take chemo tomorrow. I am worried that though the Phenergan has done nothing for my nausea, it possibly kept me from throwing up for hours and if I don't take it that is what will happen. I worry about my weird body chemistry that reacts oddly to drugs and I worry about trying a drug I have not used before. What if its side effects are worse than the Phenergan? Sigh. I am just in worry mode. I know that I am ultimately going to be just fine. But I want to skip awful-chemo night this time. I am ready to be done.
I know that I really have so little to complain about. I was talking to my Mom about it today. How I feel that, compared to so many other stories I have heard, what I have is Cancer Lite. Three weeks between treatments, not every day for 10 days then a week off, repeat. Six total. Maybe no radiation. Most likely a cure. A neat little package, really. I have been keeping up with the website of a lady in Austin who is not so lucky. Breast cancer metastasized to the point where chemo will merely extend her life a bit and she has said no thanks to it after 20 days in Seton Hospital taking radiation. She has a three-year-old daughter. She isn't quite 40 years old. And her positive attitude and peaceful demeanor are quite something to behold. I have so little to complain about.
So let's take stock. What has Cancer done TO me so far? I lost my hair. My fingers are numb. I have spent 8 months of my life feeling sick and about 11 weeks so far feeling awful from chemo. It has cost my family money and will continue to do so. Jackson will have to wait a few years for a sibling, or perhaps he may be an only child if I lose my fertility. So many needle sticks, so many do-overs.
And what has Cancer done FOR me so far? I lost my hair and surprisingly lived through it. My fingers have never typed so much that has been read by so many. I spent months feeling sick and now have days that I feel great. My family and friends have come through with money, support, company, and lots and lots of food. Jackson has hardly even noticed I have been sick. Needles don't scare me anymore and I have the scars to prove it.
I have a fine fuzz growing back on my head now. It isn't quite brown, but it isn't blond either. Not really sure what you would call it or if it will fall out too. My eyebrows are fighting the good fight. They are thinning out for sure, but they aren't gone yet. Same with the eyelashes. I should probably stop using mascara if they are getting fragile, but I can't help slathering it on anyway. I love the dramatic bald-with-big-eyes look, don't you?
Three more rounds. Not that many. I will feel better after tomorrow, I think. Well, technically I will feel worse, heh. But better mentally, having conquered the chemo-hump I am facing. Once more unto the breach, dear friends, once more...
I really, really, don't want to go take chemo tomorrow. I am worried that though the Phenergan has done nothing for my nausea, it possibly kept me from throwing up for hours and if I don't take it that is what will happen. I worry about my weird body chemistry that reacts oddly to drugs and I worry about trying a drug I have not used before. What if its side effects are worse than the Phenergan? Sigh. I am just in worry mode. I know that I am ultimately going to be just fine. But I want to skip awful-chemo night this time. I am ready to be done.
I know that I really have so little to complain about. I was talking to my Mom about it today. How I feel that, compared to so many other stories I have heard, what I have is Cancer Lite. Three weeks between treatments, not every day for 10 days then a week off, repeat. Six total. Maybe no radiation. Most likely a cure. A neat little package, really. I have been keeping up with the website of a lady in Austin who is not so lucky. Breast cancer metastasized to the point where chemo will merely extend her life a bit and she has said no thanks to it after 20 days in Seton Hospital taking radiation. She has a three-year-old daughter. She isn't quite 40 years old. And her positive attitude and peaceful demeanor are quite something to behold. I have so little to complain about.
So let's take stock. What has Cancer done TO me so far? I lost my hair. My fingers are numb. I have spent 8 months of my life feeling sick and about 11 weeks so far feeling awful from chemo. It has cost my family money and will continue to do so. Jackson will have to wait a few years for a sibling, or perhaps he may be an only child if I lose my fertility. So many needle sticks, so many do-overs.
And what has Cancer done FOR me so far? I lost my hair and surprisingly lived through it. My fingers have never typed so much that has been read by so many. I spent months feeling sick and now have days that I feel great. My family and friends have come through with money, support, company, and lots and lots of food. Jackson has hardly even noticed I have been sick. Needles don't scare me anymore and I have the scars to prove it.
I have a fine fuzz growing back on my head now. It isn't quite brown, but it isn't blond either. Not really sure what you would call it or if it will fall out too. My eyebrows are fighting the good fight. They are thinning out for sure, but they aren't gone yet. Same with the eyelashes. I should probably stop using mascara if they are getting fragile, but I can't help slathering it on anyway. I love the dramatic bald-with-big-eyes look, don't you?
Three more rounds. Not that many. I will feel better after tomorrow, I think. Well, technically I will feel worse, heh. But better mentally, having conquered the chemo-hump I am facing. Once more unto the breach, dear friends, once more...
Wednesday, September 26, 2007
The test for which there is no study
I went in to the Cancer Center yesterday for a shot of Neupagen to boost my blood counts. The shot itself hurt more than the Neulasta does. Stung like crazy going in and they administer it so slowly that you just have to grit your teeth for a full minute til it is over. My arm was sore for a good bit of the day afterwards. I felt a bit queasy for most of the day, but the bone pain didn't hit me till after 7:00 in the evening. I was relieved to feel that pain, oddly, because to me it meant that the shot was working on raising my blood counts and I really didn't want to put of chemo any longer. I took a Darvocet for the pain and was able to sleep pretty well through the night.
This morning my Mom came and took me to get my blood drawn again in hopes that my counts had risen enough. And we got the good news this afternoon that I passed the test and am scheduled for chemo at 1:00 p.m. tomorrow. Yay! Yippee! Three cheers for chemo!
Can't believe I am so happy to be getting chemo. But I just want to get through this and not wait and wait anymore. My body is really tired and still sore from the Neupagen. But nevertheless, I feel ready for another round.
Mom and I went to my family doc today to catch up with her on all my cancer treatments and news. I was really pleased to find out that the Cancer Center has been sending her regular updates on me. She sat with us for a good half hour and talked and gave me a refill of Darvocet so I don't have to bother with that tomorrow and I am just about out. And since I am going back on the bone-pain-marathon Neulasta shot I am going to need it.
We also visited the new nail salon around the corner from my house. Diamond nails is new and clean and the ladies were friendly and did a nice job. They also spoke very good English and were so nice and responsive to how I need my feet taken care of. I can't have them chopping away on my toenails. Infection and all that. I was so pleased to see them getting their tools from sterile packages even. I know my Mom liked that.
Tomorrow, Tonya is going to watch the boy while Mom and I head to chemo. They are bringing a meatloaf and cupcakes for lunch so that I go in on a full stomach again. That seemed to help last time and I have hopes it will help again.
We are also going to try a new nausea drug this time. It actually isn't available in the States, but can be faked by taking half of a Unisom tablet (not gelcap as the drug is different)and a vitamin B6 tablet. This is all over the Internet as providing good relief for pregnant women with nausea. And Dr. George gave us the go ahead to try it. So hopefully it will help. Phenergan obviously does nothing but give me the shakes, so no more of that. He said that unfortunately, I fall into the risk category for unrelieved nausea - young, white, female. That sounds odd to me that white girls get more chemo nausea than other groups, but since I can't seem to control my nausea, it makes sense.
So everyone, send good thoughts my way tomorrow afternoon and evening and I will post an update as soon as I can.
This morning my Mom came and took me to get my blood drawn again in hopes that my counts had risen enough. And we got the good news this afternoon that I passed the test and am scheduled for chemo at 1:00 p.m. tomorrow. Yay! Yippee! Three cheers for chemo!
Can't believe I am so happy to be getting chemo. But I just want to get through this and not wait and wait anymore. My body is really tired and still sore from the Neupagen. But nevertheless, I feel ready for another round.
Mom and I went to my family doc today to catch up with her on all my cancer treatments and news. I was really pleased to find out that the Cancer Center has been sending her regular updates on me. She sat with us for a good half hour and talked and gave me a refill of Darvocet so I don't have to bother with that tomorrow and I am just about out. And since I am going back on the bone-pain-marathon Neulasta shot I am going to need it.
We also visited the new nail salon around the corner from my house. Diamond nails is new and clean and the ladies were friendly and did a nice job. They also spoke very good English and were so nice and responsive to how I need my feet taken care of. I can't have them chopping away on my toenails. Infection and all that. I was so pleased to see them getting their tools from sterile packages even. I know my Mom liked that.
Tomorrow, Tonya is going to watch the boy while Mom and I head to chemo. They are bringing a meatloaf and cupcakes for lunch so that I go in on a full stomach again. That seemed to help last time and I have hopes it will help again.
We are also going to try a new nausea drug this time. It actually isn't available in the States, but can be faked by taking half of a Unisom tablet (not gelcap as the drug is different)and a vitamin B6 tablet. This is all over the Internet as providing good relief for pregnant women with nausea. And Dr. George gave us the go ahead to try it. So hopefully it will help. Phenergan obviously does nothing but give me the shakes, so no more of that. He said that unfortunately, I fall into the risk category for unrelieved nausea - young, white, female. That sounds odd to me that white girls get more chemo nausea than other groups, but since I can't seem to control my nausea, it makes sense.
So everyone, send good thoughts my way tomorrow afternoon and evening and I will post an update as soon as I can.
Monday, September 24, 2007
Chemo Disapointment
At my appointment with my oncologist this morning, we learned that my blood counts from the CBC on Friday are too low for chemo tomorrow. I had another blood draw to see if it came up in the last three days, but while it did improve a great deal, it isn't enough for me to have chemo tomorrow. I have to go in for a shot of Neupagen tomorrow to kick start my bones into making more blood cells faster then I can probably have chemo on Thursday.
I am really disappointed. I wanted the experiment with no Neulasta to be a success. But since my counts bottomed out late in the game, it looks like I will have to have the shot for the rest of the chemo cycle. That is ok. I can handle the pain. I just really don't want to delay chemo, not even for a couple of days. I like the Tuesday schedule. My mom is with me Tues and Wed, then my Dad comes for Thurs and Fri. On the Thurs schedule, I only get my mom for Thurs since she works on Fri, Sat and Sun. And that means I get one less day with my Dad, too. I enjoy the Tues schedule - not the chemo, but the time with my folks. And I can't get back to it after this round. I may be able to do the next round on a Wed. But the Tues schedule is done for. And that really upsets me. I guess I just have my routine that works and any deviation from that is upsetting. This is hard enough without schedule changes. Blah. I am upset.
Jackson was a bit of a handful this morning. He remembers everything now. When we pulled up to the Cancer Center, he started talking about the fish. He remembers that the lobby has the huge fish tank. And that they have candy. As soon as we stepped into the exam room, he started talking about M&M's cause last time we were there I has some in my bag and gave him some to keep him happy. But I didn't have any this time and he kept talking about it and it was so cute, the nurse went and found a small package of Reese's Pieces which he likes almost as much. So he ate the little package and proceeded to have the biggest sugar rush I have seen him have. We had to talk to the doctor over him cause he was talking at the top of his voice and giggling and bouncing off the walls. Oops, remind me not to provoke a sugar-rush at the doctors office again. He didn't want to get in the car seat when we left to go get my labs drawn. He kicked and bucked and screamed and it took both me and my Mom to get him buckled in. He was so mad, he yelled the whole drive over to the lab. Would be much easier if I could have had my labs drawn at the Hospital, but I haven't pursued my reinstatement as a patient yet. I am still kicked out thanks to Aetna's crappy pay schedule.
Jackson calmed down at the lab and played outside on the sidewalk with Mom while I got my blood drawn. I was lucky to have the same lady as Friday. She is good. Doesn't hurt me much at all.
Then we walked across the parking lot to a Mexican restaurant there for lunch. Jackson was pretty good until the waitress brought out a couple of tacos - one for me, one for Mom, but not one for Jackson. He was so upset that she hadn't brought him a plate too. We tried to share with him and to explain that the hot food would be out pretty soon. But he just kept pointing at the waitress and crying the cry of the broken-hearted. It was really the saddest face. So cute, but so sad. He was really hurt, I think, that we had left him out. He perked right up when his food came, though, and with a big spoon, ate almost all his beans and rice and half an enchilada. Poor baby just wanted to be included.
I tried to go to work right after lunch, but my day continued to be off. Got to work, got his bed made up and he was all ready to get in it when I realized his little fan wasn't working. It would turn on, then off, then on, then off. Jackson was concerned, kept saying "I can't turn it on." And I knew he would have a hard time sleeping without the fan and the little red light on the fan that he likes. I considered going to the store real quick for a replacement, but I was beat by that time. With my blood counts being so low, it makes sense that the morning wore my ass out. So I decided my work day was done, said goodbye, put the boy back into the car and went home. Sonja was good enough to see that I would be better off in bed myself. Plus Larry and Matt were there, so they are pretty much covered, I think.
I took a good nap myself and Jackson is still in his bed after a good 3 hour nap. He is awake and having one of his refuse-to-come-out episodes. He does this occasionally. He may yell some and if I go in, he tells me to close the door. He doesn't want to get up, he just wants to sit in his crib and be cranky. And that is fine with me because I am cranky too. Blah. No chemo till Thursday. Blah.
I am really disappointed. I wanted the experiment with no Neulasta to be a success. But since my counts bottomed out late in the game, it looks like I will have to have the shot for the rest of the chemo cycle. That is ok. I can handle the pain. I just really don't want to delay chemo, not even for a couple of days. I like the Tuesday schedule. My mom is with me Tues and Wed, then my Dad comes for Thurs and Fri. On the Thurs schedule, I only get my mom for Thurs since she works on Fri, Sat and Sun. And that means I get one less day with my Dad, too. I enjoy the Tues schedule - not the chemo, but the time with my folks. And I can't get back to it after this round. I may be able to do the next round on a Wed. But the Tues schedule is done for. And that really upsets me. I guess I just have my routine that works and any deviation from that is upsetting. This is hard enough without schedule changes. Blah. I am upset.
Jackson was a bit of a handful this morning. He remembers everything now. When we pulled up to the Cancer Center, he started talking about the fish. He remembers that the lobby has the huge fish tank. And that they have candy. As soon as we stepped into the exam room, he started talking about M&M's cause last time we were there I has some in my bag and gave him some to keep him happy. But I didn't have any this time and he kept talking about it and it was so cute, the nurse went and found a small package of Reese's Pieces which he likes almost as much. So he ate the little package and proceeded to have the biggest sugar rush I have seen him have. We had to talk to the doctor over him cause he was talking at the top of his voice and giggling and bouncing off the walls. Oops, remind me not to provoke a sugar-rush at the doctors office again. He didn't want to get in the car seat when we left to go get my labs drawn. He kicked and bucked and screamed and it took both me and my Mom to get him buckled in. He was so mad, he yelled the whole drive over to the lab. Would be much easier if I could have had my labs drawn at the Hospital, but I haven't pursued my reinstatement as a patient yet. I am still kicked out thanks to Aetna's crappy pay schedule.
Jackson calmed down at the lab and played outside on the sidewalk with Mom while I got my blood drawn. I was lucky to have the same lady as Friday. She is good. Doesn't hurt me much at all.
Then we walked across the parking lot to a Mexican restaurant there for lunch. Jackson was pretty good until the waitress brought out a couple of tacos - one for me, one for Mom, but not one for Jackson. He was so upset that she hadn't brought him a plate too. We tried to share with him and to explain that the hot food would be out pretty soon. But he just kept pointing at the waitress and crying the cry of the broken-hearted. It was really the saddest face. So cute, but so sad. He was really hurt, I think, that we had left him out. He perked right up when his food came, though, and with a big spoon, ate almost all his beans and rice and half an enchilada. Poor baby just wanted to be included.
I tried to go to work right after lunch, but my day continued to be off. Got to work, got his bed made up and he was all ready to get in it when I realized his little fan wasn't working. It would turn on, then off, then on, then off. Jackson was concerned, kept saying "I can't turn it on." And I knew he would have a hard time sleeping without the fan and the little red light on the fan that he likes. I considered going to the store real quick for a replacement, but I was beat by that time. With my blood counts being so low, it makes sense that the morning wore my ass out. So I decided my work day was done, said goodbye, put the boy back into the car and went home. Sonja was good enough to see that I would be better off in bed myself. Plus Larry and Matt were there, so they are pretty much covered, I think.
I took a good nap myself and Jackson is still in his bed after a good 3 hour nap. He is awake and having one of his refuse-to-come-out episodes. He does this occasionally. He may yell some and if I go in, he tells me to close the door. He doesn't want to get up, he just wants to sit in his crib and be cranky. And that is fine with me because I am cranky too. Blah. No chemo till Thursday. Blah.
Sunday, September 23, 2007
Baldys
We had a good time in Santa Anna this weekend. Ate too much, as usual. And as usual we return home grateful for our kin-sized bed. My Dad's guest bed is nice, just small. Might be a full even. Too small for us now that we have gotten used to the King.
I forgot my camera and was kicking myself all weekend. But David's Mom had hers and I managed to get the only picture I really wanted: A pic of me and my big brother and our bald heads. He has been shaving his head bald for several years. He figured the best way to battle male pattern baldness was to fight it with a razor. And he looks good that way. Has a nice shaped head. And the first thing I thought when I lost my hair was that I look just like Victor. So here we are in our bald-headed glory. What a pair
I still mourn the loss of my hair sometimes. I may never truly get over the experience. One day you have long, gorgeous hair down your back and the next you are bald. It isn't so bad. I have gotten used to the really quick showers. It has really cut down my getting ready time. Hair is pre-done on a stand. Or even faster, a hat or wrap. I find that I spend more time on make-up now. I wear more of it more often. It makes sense, of course, that I would turn to make-up to feel pretty. And clothes shopping. It all makes perfect sense. But I sure would rather have my hair back. Can't blame me for that, can you?
Tomorrow I have my pre-chemo appointment with my Oncologist. I will talk to him a bit more in depth about what my latest PET scan showed and what that means. Also want to ask about my blood work specifically. How my numbers with the Neulasta shot compare with my numbers without it. I just want all the information I can get. And provided everything looks good on my Friday blood work, I go in for Chemo round four on Tuesday.
Friday, September 21, 2007
My eye doctor visit went better than I expected. Seems all my blurriness is still a symptom of severe dryness, which the chemo is exacerbating. Plus I have a ton of allergy blisters under my eyelids, which explains the itching. The machine that reads your eyes and spits out your prescription says that I do not have residual prescription from the lasik. Dr. Miller says the numbers look the best they have so far. So that is good news. The lasik was successful in removing 100% of my prescription. I just need to finish chemo and use my allergy drops and hopefully in a few months the dry eye will end and I will have great vision. I am quite legal to drive right now, my blurriness is only in sharpness while watching tv. Not too bad.
This afternoon, David, Jackson and I are heading out of town for the weekend. Going to Santa Anna to visit my Dad. David's folks and his Aunt and Cousin from Germany are going to meet us out there tomorrow. It should be a fun weekend. Nice to get outta town for a couple of days since I have chemo on Tuesday.
This afternoon, David, Jackson and I are heading out of town for the weekend. Going to Santa Anna to visit my Dad. David's folks and his Aunt and Cousin from Germany are going to meet us out there tomorrow. It should be a fun weekend. Nice to get outta town for a couple of days since I have chemo on Tuesday.
Wednesday, September 19, 2007
Just watched a Nightline report about young adults with cancer. They talked about the fact that cancer survival rates have skyrocketed for the 5-14 and 40+ age groups but that for the 15-39 age group, rates have stayed the same or gotten slightly worse in the last 30 years. It all makes sense when you understand that the problem of cancer in young adults is the diagnosis. We habitually delay treatment for ailments we figure are sports-related (body pain) or pregnancy related or in my case allergy related. We delay getting help because we figure it is anything other than something really serious and our family doctors don't help any because they misdiagnose us in the same way and wait-and-see us to fricken death. Literally. This is what Nightline had to say and since it pretty much gels with my own experience I tend to believe it. 15-39 year-olds have a stagnant survival rate because the cancer is so damned advanced in a lot of cases before it is even detected.
I am lucky that my 10-month chronic cough didn't translate into stage 4 lymphoma instead of stage 2. There are many, it seems, who aren't so lucky.
I am lucky that my 10-month chronic cough didn't translate into stage 4 lymphoma instead of stage 2. There are many, it seems, who aren't so lucky.
So my son is a future bulimic. He spent the entire ride home from work today sticking his fingers down his throat and gagging himself. I kept hearing him dry heaving and saw what he was doing. The more I told him to cut it out the funnier he found the whole thing. He wouldn't stop til he actually managed to make himself throw up. Luckily he hadn't eaten since lunch and all he threw up was the lemonade he'd just had. Sticky, but not all that gross, thankfully. And after that he stopped, having figured out that yes, sticking your fingers down your throat will make you gag every time and eventually you will throw up. Experiment at end. Sheesh.
Good news on the medical front. My oncologist's office called yesterday to say that my blood counts were good enough that I don't have to do the Neulasta shot again this round. I am happy about that, though I did seem more tired this round than last. But three or four days of low energy versus the same of crappy bone pain? Not a bad trade-off.
Tomorrow I have an eye doctor check up. My left eye is still blurryish and not getting much better. I may have to face the fact that I have residual prescription left in that eye. The question then is do I qualify for a lasik touch up? Or do I want to wear a low power lens in that eye? Or will I just get used to it as is and not correct it. It isn't bad enough that I can't drive legally. Not even close. But I can tell that my vision could be sharper. Not sure yet what I want to do. We'll see what the doc says tomorrow.
Elaine is going to sit with Jackson tonight so David and I can go to dinner at Macaroni Grill. DMI, his employer, gave us a $100 gift card. Cause I have cancer. Very nice of them to think of us. They have been supportive of the time off David has needed here and there to help me out or go to doc visits with me. He really hasn't taken much, but what he has taken has been short notice, last minute stuff at the beginning. And they were good about it. Heh, people are so darn happy it isn't their spouse that has cancer, they will pretty much let him do whatever he needs to. So dinner on DMI tonight. Yay!
Good news on the medical front. My oncologist's office called yesterday to say that my blood counts were good enough that I don't have to do the Neulasta shot again this round. I am happy about that, though I did seem more tired this round than last. But three or four days of low energy versus the same of crappy bone pain? Not a bad trade-off.
Tomorrow I have an eye doctor check up. My left eye is still blurryish and not getting much better. I may have to face the fact that I have residual prescription left in that eye. The question then is do I qualify for a lasik touch up? Or do I want to wear a low power lens in that eye? Or will I just get used to it as is and not correct it. It isn't bad enough that I can't drive legally. Not even close. But I can tell that my vision could be sharper. Not sure yet what I want to do. We'll see what the doc says tomorrow.
Elaine is going to sit with Jackson tonight so David and I can go to dinner at Macaroni Grill. DMI, his employer, gave us a $100 gift card. Cause I have cancer. Very nice of them to think of us. They have been supportive of the time off David has needed here and there to help me out or go to doc visits with me. He really hasn't taken much, but what he has taken has been short notice, last minute stuff at the beginning. And they were good about it. Heh, people are so darn happy it isn't their spouse that has cancer, they will pretty much let him do whatever he needs to. So dinner on DMI tonight. Yay!
Monday, September 17, 2007
This was a good weekend. Saturday, I got David out of bed to take Jackson to the Sleeping Beauty show at the Scottish Rite Theatre. Andrea' is in it and I wanted to go support her. Jackson watched a little of the show here and there, mostly when the kids clapped to wake up Sleepy Pete. He would stop going up and down the stairs and clap with them. Mostly he just had a good time being there, but really didn't partake much of the show-watching pleasures. I think he is still a bit young for it, especially at those prices. But it was fun and we got a couple of good pics.
Later on Saturday, Andrea' came over and I dragged her to the mall. I needed to return a pair of the gazillion pants I bought in my chemo-stupor and I had NY&Co cash to spend. Reward dollars, if you will. So I bought a couple of new tops and made Andrea choose a couple for her birthday (it's tomorrow).
We also got into the Halloween Store there and looked around. There are so many cute toddler costumes, but this year I am afraid that Jackson will be obstinate about costuming. He may need to help pick one out this year, since he is so picky about choosing his own clothes. I fear that the dress-your-kid-up-like-a-chicken-and-then-laugh event from last year isn't gonna fly this time. He would probably look at it with much disdain and refuse to put it on. Maybe something Thomas the Tank Engine would pass muster. Or Mickey Mouse, though that would cost a fortune (fricken Disney). We may have to take him on a costume-buying excursion and make sure whatever we get has a shot at being worn.
Of course I can't take him to the Halloween store since they have the scariest, freakiest shit right there at the front door. Man-sized realistic zombies and things. Big, head-sized spiders hangin in the entrance. They kind of gave me the willies looking at them, so Jackson's heart would probably just stop dead if I tried to get him into that store. And there is no way to get to the toddler costumes without coming within a foot of those things and I simply won't do that to him. Maybe Target or something like that would be innocuous enough to take him looking.
Sunday we went to Killeen to be with David's folks at the birthday party of a friend of the family, Beverly. We had proof of how much Jackson enjoys swimming at Bev and Dave's. I guess it really is just our neighborhood pool he doesn't like. Probably too many people. But we are still going to keep trying. We don't pay that $27 home owners monthly fee for nothing.
Today, Jackson and I made it to work. He requested that I wear my hair today. When he sees my wig on the stand in my closet while I am getting ready sometimes, he tells me to 'put on hair, mommy.' When he asks, I usually comply. I guess Jackson, at two, understands that people are supposed to have hair on their heads, not on little stands in their closets.
Work was busy. We are getting so busy on such a constant basis at the Palace that we are putting in a much needed third phone line and a third computer work-station. There is so much going on now that we really do need a volunteer answering incoming calls, a staff person on one computer entering reservations, Sonja working at her desk on publicity and managerial tasks and a third staff person returning calls and entering data with the new laptop. Wow. In the two years since I was the first office admin taken on part-time, things have really taken off. First we added a morning admin -Elizabeth - and now we have added two more! Larry for the office and Matt to help Mary Ellen, primarily, and to back up the office when needed. And though the transition has been tough, especially with me being so suddenly gone so much, I think it spells exciting things for the Palace. The phone rings constantly and the old way of me and a volunteer, or just me in the afternoons would not cut it anymore. How awesome is that? Live theatre in Georgetown is becoming so much more established. I think that is great news.
I can't tell you how much I enjoyed just getting in the office today and getting my hands on stacks of work to be done. Nothing like a good old fashioned hour or two of data entry and answering questions from the volunteer to make me feel like myself again. You remember, the competent, busy, fast-moving, girl with all the answers? That one. This week I get to be that girl and I sure plan to enjoy it. I am also the wife who cooks dinner this week. And maybe even the one who picks up the house after Jackson goes to bed. Feeling good and somewhat energized and happy to be looking forward to a week of the same.
Tuesday next week will come way too fast for my liking.
Friday, September 14, 2007
I just got home from opening night of You Can't Do That, Dan Moody! This is a production co-sponsored by the Palace and Tom Swift. It is being performed at the Williamson County Courthouse in the actual courtroom where the true court case was tried in 1923. It was the first successful prosecution of the KKK for their crimes in the US. Pretty interesting history. Decent play.
Phil Rodriguez who played Dan Moody, the District Attorney, was fabulous. And there were several good to great performances. There were also some very amateur performances as lots of Williamson County officials and friends of Tom Swift (co-author and director) are in the show and are not experienced actors. The leads are good enough to carry it, though. And those that need to be convincing bad guys are well able to pull it off. I enjoyed it as a cool piece of history if not the most polished piece of theatre.
And the Courthouse renovation looks really good. Here is a pic looking up from the rotunda and one inside the courtroom itself.
I wanted to take more pictures but my camera ran out of battery power. There is a story here. Wanna hear it? OK!
This morning while getting dressed, I picked up the Payless bag on my closet floor to take out the new shoes inside - the new shoes I bought on my post-chemo shopping trip - the one I don't exactly remember. Inside the Payless bag was a bag from the Dollar Store. Lakeline Mall has a Dollar Store. I now vaguely remember going into the Lakeline Mall Dollar Store on the ill-fated shopping trip. I bought two things in the Dollar Store. One was a box of about 100 emery boards in different sizes. I have started biting my nails again, so I am not exactly sure what I will do with this lifetime supply of emery boards, but I have them. And I guess they cost me a dollar.
The other purchase I made in the Dollar Store was a package of AA batteries. I was thinking clearly enough to remember that we were out of AA batteries, but not clearly enough to reason through the logic of purchasing Sunbeam brand batteries at the Dollar Store. Sunbeam. They make batteries apparently and I bought 8 of them. So when I picked up the camera tonight to take along with me I popped a couple of them in, since they were my only option, and off I went.
I took six pictures and that was all she wrote. I should have known they would crap out on me when I picked them up and they weighed less than an ice cube - put together. And the package says "Sunbeam, De Larga Duracion." In Spanish. Not very Larga. And their Duracion leaves much to be desired. Yeah, not the best choice I made there. So I don't have the pics I wanted from the courthouse.
Today, Jackson and I made it to work. I really wanted to be there because with Dan Moody opening tonight and Tenor still running at the theatre proper, I knew there would be lots of work and some serious reservation double checking to do. And I was right. Larry was there this afternoon too. And Karen, Larry and I kept busy all afternoon while Jackson napped, taking reservations, checking seating charts and reservation lists and just getting things ready. It felt good to work hard and feel like I accomplished something. And I decided to leave Jackson with David and go to the opening night. Glad I did, though I am pretty beat now. My body feels tired, like I worked hard today, not tired like I am sick. I like that better. And I will probably sleep well. Yay!
What else? Oh, update from symptom-land: My fingertips are still annoyingly numb-slash-pins-and-needles-tingly. And now I can't sing. Yup, you heard me. I cannot sing. Since the cancer has been blasted out of my lung and I can breath again these past 6 weeks or so, I have enjoyed being able to sing again. In the shower, in the car, washing dishes...you know, places you sing. Before chemo, every deep breath led to a coughing spasm, and singing requires air, so singing became an under my breath thing.
Then with the deep breaths came the ability to jam out in the car during the admittedly few times I have been driving by myself or with the captive Jackson who has to listen me. But I have been noticing lately that I can't control the sound. Can't sustain a note. Sounds flatish or just off. And frankly, just sounds like shit. Now, those that know me know that while I have little breath control and power, I do have a nice singing voice. Well, not right now I don't. I kind of thought it might be my imagination, but I googled around this afternoon and sure enough - fucking chemo.
It's the Vincristine again, the same drug/poison damaging the nerves in my hands is screwing with my vocal cords. Even my speaking voice is being affected. Trying to talk in the Rotunda tonight with the crowd buzzing all around was hard. My voice cracks and warbles. It sounds like I am out of breath; it just plain sounds funny. Sigh. Hopefully this is temporary, too. I can't find a whole lot of info on it, just vague confirmation that others have reported it and long-term Vincristine use has led to loss of voice in some people. Hopefully not permanent, especially since I want to act again when I am cured. I'll definitely ask the doctor about it before the next round. Maybe he knows something about it.
Phil Rodriguez who played Dan Moody, the District Attorney, was fabulous. And there were several good to great performances. There were also some very amateur performances as lots of Williamson County officials and friends of Tom Swift (co-author and director) are in the show and are not experienced actors. The leads are good enough to carry it, though. And those that need to be convincing bad guys are well able to pull it off. I enjoyed it as a cool piece of history if not the most polished piece of theatre.
And the Courthouse renovation looks really good. Here is a pic looking up from the rotunda and one inside the courtroom itself.
I wanted to take more pictures but my camera ran out of battery power. There is a story here. Wanna hear it? OK!
This morning while getting dressed, I picked up the Payless bag on my closet floor to take out the new shoes inside - the new shoes I bought on my post-chemo shopping trip - the one I don't exactly remember. Inside the Payless bag was a bag from the Dollar Store. Lakeline Mall has a Dollar Store. I now vaguely remember going into the Lakeline Mall Dollar Store on the ill-fated shopping trip. I bought two things in the Dollar Store. One was a box of about 100 emery boards in different sizes. I have started biting my nails again, so I am not exactly sure what I will do with this lifetime supply of emery boards, but I have them. And I guess they cost me a dollar.
The other purchase I made in the Dollar Store was a package of AA batteries. I was thinking clearly enough to remember that we were out of AA batteries, but not clearly enough to reason through the logic of purchasing Sunbeam brand batteries at the Dollar Store. Sunbeam. They make batteries apparently and I bought 8 of them. So when I picked up the camera tonight to take along with me I popped a couple of them in, since they were my only option, and off I went.
I took six pictures and that was all she wrote. I should have known they would crap out on me when I picked them up and they weighed less than an ice cube - put together. And the package says "Sunbeam, De Larga Duracion." In Spanish. Not very Larga. And their Duracion leaves much to be desired. Yeah, not the best choice I made there. So I don't have the pics I wanted from the courthouse.
Today, Jackson and I made it to work. I really wanted to be there because with Dan Moody opening tonight and Tenor still running at the theatre proper, I knew there would be lots of work and some serious reservation double checking to do. And I was right. Larry was there this afternoon too. And Karen, Larry and I kept busy all afternoon while Jackson napped, taking reservations, checking seating charts and reservation lists and just getting things ready. It felt good to work hard and feel like I accomplished something. And I decided to leave Jackson with David and go to the opening night. Glad I did, though I am pretty beat now. My body feels tired, like I worked hard today, not tired like I am sick. I like that better. And I will probably sleep well. Yay!
What else? Oh, update from symptom-land: My fingertips are still annoyingly numb-slash-pins-and-needles-tingly. And now I can't sing. Yup, you heard me. I cannot sing. Since the cancer has been blasted out of my lung and I can breath again these past 6 weeks or so, I have enjoyed being able to sing again. In the shower, in the car, washing dishes...you know, places you sing. Before chemo, every deep breath led to a coughing spasm, and singing requires air, so singing became an under my breath thing.
Then with the deep breaths came the ability to jam out in the car during the admittedly few times I have been driving by myself or with the captive Jackson who has to listen me. But I have been noticing lately that I can't control the sound. Can't sustain a note. Sounds flatish or just off. And frankly, just sounds like shit. Now, those that know me know that while I have little breath control and power, I do have a nice singing voice. Well, not right now I don't. I kind of thought it might be my imagination, but I googled around this afternoon and sure enough - fucking chemo.
It's the Vincristine again, the same drug/poison damaging the nerves in my hands is screwing with my vocal cords. Even my speaking voice is being affected. Trying to talk in the Rotunda tonight with the crowd buzzing all around was hard. My voice cracks and warbles. It sounds like I am out of breath; it just plain sounds funny. Sigh. Hopefully this is temporary, too. I can't find a whole lot of info on it, just vague confirmation that others have reported it and long-term Vincristine use has led to loss of voice in some people. Hopefully not permanent, especially since I want to act again when I am cured. I'll definitely ask the doctor about it before the next round. Maybe he knows something about it.
Wednesday, September 12, 2007
Last night I went to bed in a lot of bone pain and with a pounding headache. Took a Darvocet and hit the sack about 10ish. For once the Darvocet worked like a charm and I was able to sleep and woke up this morning feeling so much better. Less bone pain, less body aches. Had a nagging headache off and on today, and have been slow and weak, but as far as discomfort, I think I have hit the upswing for this round. Yippee!
The wonderful Dr. George called about 9:15 to give me the results of the PET/CT. It was great news! He said the scan looked "just as good as we could have expected." Said all that was left of the cancer is a little rind on one node. Probably the one that was huge in my lung - looked like a golf ball on the x-ray. He confirmed that we are planning on three more treatments for a total of six. It was a possibility that we'd go to eight, but that doesn't look like it will be necessary. So after three more rounds of chemo, we get another scan and decide if radiation is necessary. So I am officially halfway done and it feels good.
I was also able to talk to him a bit about some side effects I have been having. The last two days the tips of my fingers have been numbish and sometimes all pins and needles. Very weird feeling. I can almost feel things I am touching but my fine motor skills are off. I drop things, can't maneuver things, etc. It started off kinda slowly; it took me a day or so to recognize that my fingers felt 'funny'. Heh, it makes sense now that I couldn't get my earrings off on Monday. My fingers aren't quite working. I vaguely remember this being one of the million side effects they told me to look out for when I got the first round of chemo. So I googled around a bit this morning and found that, indeed, peripheral neuropathy is a side effect of the Vincristine that is part of my chemo. Several online sources said to report this immediately as it needs to be monitored. And it just so happens that Dr. George called me about that time so I let him know about it.
He wants me to pay attention and see if it gets better this and next week before the next round. And if it gets worse I need to let them know. There isn't anything they can do about it except cut back the dose of the Vincristine, which he doesn't want to do unless this gets much worse. He doesn't want to compromise the treatment. Well I don't either. This is an annoying side effect that bothers me most when I try to do small work or now while I am typing. But reading about how bad it can be online showed me this is small potatoes. Some people who are on 18-month treatment plans (as opposed to my 18-week plan) report having to use a walker because they can't feel their feet. I just have some tingly fingers and am clutzy. I figure I can handle that. But he does want to monitor it and see where it goes. And it is most likely not permanent. Could take several months to resolve when I am done with chemo. But again, my youth helps.
I am so impressed that Dr. George called me with results this morning and I didn't have to make one phone call to track him down or request that he call me. He really has shown to be on top of things and courteous with the fact that this news means so much to us and waiting for it is hard. I am glad to know that I can trust him to give me the attention I need even when it is just a phone call to say 'looks good.'
Mom took me and Jackson to Target today to get a new car seat. She wants to have one in her car all the time, since she is my primary driver most of the time now. And Jackson always wants to go in 'Grammy's car' instead of mine. He would always rather go in Daddy's car or really anyone else's because he thinks mine only goes to work, I guess. Heh, we have been forbidden to drive my car on the weekends for some time now cause Jackson insists that we take Daddy's car. Throws an absolute fit if Daddy's car is in the garage and we still get in mine. It is not so bad with Mom's car, but he does get really excited to get to ride in her Santa Fe. It rides up high and he can see out and he loves it. So Mom got tired of switching the car seat in and out of my car. Plus mine does not fit very well in her car. I can get it so tight and snug in my car, but in hers, I simply can't get it stable and it always bothers me. With a new seat, we can use the LATCH system and it should be quite snug.
My carseat desperately needs a new cover. The elastic is fried from too much Texas heat and I can't even put Jackson in it without the cover coming off and bunching up and falling over. It belonged to my sister first and we inherited it. And it is still a fine seat, one of the best still on the market. Just needs a new cover pretty badly. Online, Britax sells new covers for $40 plus $10 shipping so I thought I'd order one. Then I saw that they sell new strap/buckle sets for $12 and I thought maybe that would be a good idea to replace the straps too since they've been washed in detergent, which they say not to do, and perhaps 4 or 5 years of use might weaken them. I went to checkout online and realized that a new cover, straps, buckle and shipping would come to $69. The brand new top-rated Graco at Target Mom bought today was $79. Hmmm. Now I don't know what to do. Refit perfectly good car seat or get new car seat for $10 more? If you have an opinion feel free to comment. I'll be pondering this for at least a day or two.
Tomorrow is my sister's birthday. Happy Birthday, Jenni! Love you!
The wonderful Dr. George called about 9:15 to give me the results of the PET/CT. It was great news! He said the scan looked "just as good as we could have expected." Said all that was left of the cancer is a little rind on one node. Probably the one that was huge in my lung - looked like a golf ball on the x-ray. He confirmed that we are planning on three more treatments for a total of six. It was a possibility that we'd go to eight, but that doesn't look like it will be necessary. So after three more rounds of chemo, we get another scan and decide if radiation is necessary. So I am officially halfway done and it feels good.
I was also able to talk to him a bit about some side effects I have been having. The last two days the tips of my fingers have been numbish and sometimes all pins and needles. Very weird feeling. I can almost feel things I am touching but my fine motor skills are off. I drop things, can't maneuver things, etc. It started off kinda slowly; it took me a day or so to recognize that my fingers felt 'funny'. Heh, it makes sense now that I couldn't get my earrings off on Monday. My fingers aren't quite working. I vaguely remember this being one of the million side effects they told me to look out for when I got the first round of chemo. So I googled around a bit this morning and found that, indeed, peripheral neuropathy is a side effect of the Vincristine that is part of my chemo. Several online sources said to report this immediately as it needs to be monitored. And it just so happens that Dr. George called me about that time so I let him know about it.
He wants me to pay attention and see if it gets better this and next week before the next round. And if it gets worse I need to let them know. There isn't anything they can do about it except cut back the dose of the Vincristine, which he doesn't want to do unless this gets much worse. He doesn't want to compromise the treatment. Well I don't either. This is an annoying side effect that bothers me most when I try to do small work or now while I am typing. But reading about how bad it can be online showed me this is small potatoes. Some people who are on 18-month treatment plans (as opposed to my 18-week plan) report having to use a walker because they can't feel their feet. I just have some tingly fingers and am clutzy. I figure I can handle that. But he does want to monitor it and see where it goes. And it is most likely not permanent. Could take several months to resolve when I am done with chemo. But again, my youth helps.
I am so impressed that Dr. George called me with results this morning and I didn't have to make one phone call to track him down or request that he call me. He really has shown to be on top of things and courteous with the fact that this news means so much to us and waiting for it is hard. I am glad to know that I can trust him to give me the attention I need even when it is just a phone call to say 'looks good.'
Mom took me and Jackson to Target today to get a new car seat. She wants to have one in her car all the time, since she is my primary driver most of the time now. And Jackson always wants to go in 'Grammy's car' instead of mine. He would always rather go in Daddy's car or really anyone else's because he thinks mine only goes to work, I guess. Heh, we have been forbidden to drive my car on the weekends for some time now cause Jackson insists that we take Daddy's car. Throws an absolute fit if Daddy's car is in the garage and we still get in mine. It is not so bad with Mom's car, but he does get really excited to get to ride in her Santa Fe. It rides up high and he can see out and he loves it. So Mom got tired of switching the car seat in and out of my car. Plus mine does not fit very well in her car. I can get it so tight and snug in my car, but in hers, I simply can't get it stable and it always bothers me. With a new seat, we can use the LATCH system and it should be quite snug.
My carseat desperately needs a new cover. The elastic is fried from too much Texas heat and I can't even put Jackson in it without the cover coming off and bunching up and falling over. It belonged to my sister first and we inherited it. And it is still a fine seat, one of the best still on the market. Just needs a new cover pretty badly. Online, Britax sells new covers for $40 plus $10 shipping so I thought I'd order one. Then I saw that they sell new strap/buckle sets for $12 and I thought maybe that would be a good idea to replace the straps too since they've been washed in detergent, which they say not to do, and perhaps 4 or 5 years of use might weaken them. I went to checkout online and realized that a new cover, straps, buckle and shipping would come to $69. The brand new top-rated Graco at Target Mom bought today was $79. Hmmm. Now I don't know what to do. Refit perfectly good car seat or get new car seat for $10 more? If you have an opinion feel free to comment. I'll be pondering this for at least a day or two.
Tomorrow is my sister's birthday. Happy Birthday, Jenni! Love you!
Tuesday, September 11, 2007
My Mom picked me up yesterday morning at 8:30 and we headed into Austin for my PET/CT scan. Tonya stayed with Jackson at my house and he was so excited, as usual, to see her. He hardly noticed me leaving. He was too busy running away from Tonya. He runs from those he loves best, all the while looking over his shoulder to make sure he is being chased. Very cute.
So we left the chase to TT and Jackson and hit morning traffic. If it weren't for the no eating thing that left me somewhat shaky, I would have offered to drive. Mom isn't the most comfortable in highway traffic. But she did pretty well and we made it only a couple minutes late.
They wouldn't let her come back with me for the scan this time. She had to wait in the frigid waiting room while I was whisked off alone for a few hours. I had worn clothes without metal, as requested, but there were some plastic loops on my cami top that they thought might show up. So, much as I didn't want to, I ended up in a hospital gown and robe for the exam. I prefer my own clothes, even the metal-less jammies I had worn, to the the institutional open-backed gown. For obvious reasons. But I put it on and the nurse came back in with a 20 oz Styrofoam cup of delicious barium for me to drink. I was actually ok with that, cause I was so thirsty from being NPO all morning. Same lovely chalky-coconutty goodness. Mmmmm...barium.
Then came the IV start. I am a little disappointed that I keep having to get IV's when I have this nifty port implanted right in my chest. But it seems like for tests and scans, they simply don't want to use it. Too close to my heart, which they were scanning last time. This time, I really didn't get a reason, just that they don't like to use it unless it is a last resort. My nurse, or tech, not sure what her title is, was not the most open lady I have met. She was nice, but sort of clipped and rushed. Too focused on the job instead of the patient is what I would say, but I really don't have any call to complain. She was fine. Just not warm.
She went for the vein in my left arm, the one they all go for at first. And miss. I heard the usual complaint of "you have small veins," as she dug around for a minute and sent shooting nerve pain up my arm and into my thumb. Ouch. "You OK?" She asked, while continuing to probe. "Yup. Fine thanks."
When she gave up, she was gracious enough not to stick me several more times trying in vain (ha ha). Instead she got the paramedic and resident 'difficult' IV starter to come in. He went for my right arm and like butter, quickly and near-painlessly eased the IV in lickety-split. I don't know how some people can hurt you and some people can do it so easily. He was good. I told him that and he laughed. "That's my job." He said. I wanted to ask him, why do you have to let the other one dig in there before I get the pleasure of your services? Can I just start requesting the 'expert' right off? Please?
Then a small snag. My earrings. I forgot about them. They are metal and I couldn't wear metal in the scanner. So I had to get them out. Except they are freshly pierced and I have never taken them out before. And I recently bit all my fingernails off for some reason and couldn't get a grip on the little buggers to get the backs off. They have a notch to keep the backs on and I simply couldn't do it. The nurse/tech lady watched me struggle for a bit before reluctantly helping me.
She got the first one off and to my horror, my ear started bleeding. Not much, just a little, but the nurse/tech jumped up as if I had the plague and furiously washed her hands at the sink. I had bled on her. I felt awful. So embarrassing. And worse, I still couldn't get the other one off and she stood all the way on the other side of the little room and I couldn't look at her. I knew, and she knew that she was going to have to do it for me, but she so didn't want to. I know I am not carrying any infectious diseases, but she didn't know that and it isn't in her job description to risk blood-borne infection by helping off a patient with her earrings. But damn. What an awful, awkward moment. She finally helped me with the second earring and we got through it she and I, though it didn't really bring us closer together as humans. Too bad.
She next took me to the 'Uptake' room. Which is a tiny cubicle room with an institutional recliner and a heater where I knew I was to spend the next hour alone, percolating. She brought in the radioactive sugar stuff to inject in my IV. It is carried in this small iron toolbox thingie with a handle and a lock. She opened it and took out the metal syringe. This stuff is so nasty they have to carry it in metal but it is ok to inject into me. I laughed at that and the nurse/tech told me the metal is not to protect me, but to protect the staff. Since they do something like 15 patients a day, if they didn't store it as they do, the staff would be super exposed to radiation and die in agony. Ok, she didn't say they would die in agony. I added that part.
After the infusion of radioactive goodness, I was instructed just to rest for an hour. No book, no music, no TV; no brain stimulation at all. I worried it would drag on forever, but I managed to doze a bit and the hour went pretty quickly. The nurse/tech came back in with another 16oz or so of barium for me and then it was my turn for the scan.
On the table in the frigid PET/CT room, they had me put my arms above my head and covered me with blankets except for my face. Took about 35 minutes to complete the scan. That, too, went faster than I thought. I tried to just close my eyes and not get freaked out by being in the tube. I am more than a little claustrophobic, but have found that just breathing and relaxing and closing my eyes can keep me from feeling trapped in the tube. Shudder.
When the scan was over and I was back in my own clothes, Mom and I went to Pat Painter's Wig Salon to pick up some more hats. I bought two turban-like hats when I got my wig, but I decided I needed more variety. I have been wearing more hats than the wig, it being so hot. And I looked around online and didn't find any I liked better or had much better prices that what Pat's has to offer. So I got 4 new hats/turbans and I think that will do me for the duration. Two are cute 1920's style hats and two are the headwrap kind. I should do some pics soon and show them off.
So I have been waiting to see what this week would bring as far as pain and lethargy. I didn't get the Neulasta shot lat week, which is the cause of the severe bone pain, in hopes that my body can handle the extra work on its own. And I think we have good news/bad news on that front. Last night, right on schedule, I started to ache and buzz and feel warm, just like last time. Bone pain. No shot, but still, bone pain, that is the bad news. Good news is that this means that my bones recognize, without the shot, that they need to seriously kick out some red blood cells. So I am having to deal with a slightly more moderate version of the bone pain, but this tells me that my body is still functioning as it should. I get a blood draw tomorrow to determine if it is enough. If my bones are not keeping up on their own, I will have to get a shot a day for a few days to make up for it. But I have been pretty sore and in pain most of the day, so it seems like I'm really trying to do it on my own. We shall see. If I need the shot, I need it and I am fine with that.
Hopefully we will find out the results of the PET scan tomorrow, I know I will be calling. We want to hear just how much the cancer has shrunk. David is pretty anxious, more than I am. He needs the reassurance of some numbers, I think, and hopefully we will be able to give him that soon.
Thanks to the Fairchild's who brought over an awesome pot of spaghetti for us tonight. Garlic bread, even! I can't thank you enough. It was nice to not have to cook tonight, when I am feeling so sore and tired. I appreciate your kindness more than I can say.
So we left the chase to TT and Jackson and hit morning traffic. If it weren't for the no eating thing that left me somewhat shaky, I would have offered to drive. Mom isn't the most comfortable in highway traffic. But she did pretty well and we made it only a couple minutes late.
They wouldn't let her come back with me for the scan this time. She had to wait in the frigid waiting room while I was whisked off alone for a few hours. I had worn clothes without metal, as requested, but there were some plastic loops on my cami top that they thought might show up. So, much as I didn't want to, I ended up in a hospital gown and robe for the exam. I prefer my own clothes, even the metal-less jammies I had worn, to the the institutional open-backed gown. For obvious reasons. But I put it on and the nurse came back in with a 20 oz Styrofoam cup of delicious barium for me to drink. I was actually ok with that, cause I was so thirsty from being NPO all morning. Same lovely chalky-coconutty goodness. Mmmmm...barium.
Then came the IV start. I am a little disappointed that I keep having to get IV's when I have this nifty port implanted right in my chest. But it seems like for tests and scans, they simply don't want to use it. Too close to my heart, which they were scanning last time. This time, I really didn't get a reason, just that they don't like to use it unless it is a last resort. My nurse, or tech, not sure what her title is, was not the most open lady I have met. She was nice, but sort of clipped and rushed. Too focused on the job instead of the patient is what I would say, but I really don't have any call to complain. She was fine. Just not warm.
She went for the vein in my left arm, the one they all go for at first. And miss. I heard the usual complaint of "you have small veins," as she dug around for a minute and sent shooting nerve pain up my arm and into my thumb. Ouch. "You OK?" She asked, while continuing to probe. "Yup. Fine thanks."
When she gave up, she was gracious enough not to stick me several more times trying in vain (ha ha). Instead she got the paramedic and resident 'difficult' IV starter to come in. He went for my right arm and like butter, quickly and near-painlessly eased the IV in lickety-split. I don't know how some people can hurt you and some people can do it so easily. He was good. I told him that and he laughed. "That's my job." He said. I wanted to ask him, why do you have to let the other one dig in there before I get the pleasure of your services? Can I just start requesting the 'expert' right off? Please?
Then a small snag. My earrings. I forgot about them. They are metal and I couldn't wear metal in the scanner. So I had to get them out. Except they are freshly pierced and I have never taken them out before. And I recently bit all my fingernails off for some reason and couldn't get a grip on the little buggers to get the backs off. They have a notch to keep the backs on and I simply couldn't do it. The nurse/tech lady watched me struggle for a bit before reluctantly helping me.
She got the first one off and to my horror, my ear started bleeding. Not much, just a little, but the nurse/tech jumped up as if I had the plague and furiously washed her hands at the sink. I had bled on her. I felt awful. So embarrassing. And worse, I still couldn't get the other one off and she stood all the way on the other side of the little room and I couldn't look at her. I knew, and she knew that she was going to have to do it for me, but she so didn't want to. I know I am not carrying any infectious diseases, but she didn't know that and it isn't in her job description to risk blood-borne infection by helping off a patient with her earrings. But damn. What an awful, awkward moment. She finally helped me with the second earring and we got through it she and I, though it didn't really bring us closer together as humans. Too bad.
She next took me to the 'Uptake' room. Which is a tiny cubicle room with an institutional recliner and a heater where I knew I was to spend the next hour alone, percolating. She brought in the radioactive sugar stuff to inject in my IV. It is carried in this small iron toolbox thingie with a handle and a lock. She opened it and took out the metal syringe. This stuff is so nasty they have to carry it in metal but it is ok to inject into me. I laughed at that and the nurse/tech told me the metal is not to protect me, but to protect the staff. Since they do something like 15 patients a day, if they didn't store it as they do, the staff would be super exposed to radiation and die in agony. Ok, she didn't say they would die in agony. I added that part.
After the infusion of radioactive goodness, I was instructed just to rest for an hour. No book, no music, no TV; no brain stimulation at all. I worried it would drag on forever, but I managed to doze a bit and the hour went pretty quickly. The nurse/tech came back in with another 16oz or so of barium for me and then it was my turn for the scan.
On the table in the frigid PET/CT room, they had me put my arms above my head and covered me with blankets except for my face. Took about 35 minutes to complete the scan. That, too, went faster than I thought. I tried to just close my eyes and not get freaked out by being in the tube. I am more than a little claustrophobic, but have found that just breathing and relaxing and closing my eyes can keep me from feeling trapped in the tube. Shudder.
When the scan was over and I was back in my own clothes, Mom and I went to Pat Painter's Wig Salon to pick up some more hats. I bought two turban-like hats when I got my wig, but I decided I needed more variety. I have been wearing more hats than the wig, it being so hot. And I looked around online and didn't find any I liked better or had much better prices that what Pat's has to offer. So I got 4 new hats/turbans and I think that will do me for the duration. Two are cute 1920's style hats and two are the headwrap kind. I should do some pics soon and show them off.
So I have been waiting to see what this week would bring as far as pain and lethargy. I didn't get the Neulasta shot lat week, which is the cause of the severe bone pain, in hopes that my body can handle the extra work on its own. And I think we have good news/bad news on that front. Last night, right on schedule, I started to ache and buzz and feel warm, just like last time. Bone pain. No shot, but still, bone pain, that is the bad news. Good news is that this means that my bones recognize, without the shot, that they need to seriously kick out some red blood cells. So I am having to deal with a slightly more moderate version of the bone pain, but this tells me that my body is still functioning as it should. I get a blood draw tomorrow to determine if it is enough. If my bones are not keeping up on their own, I will have to get a shot a day for a few days to make up for it. But I have been pretty sore and in pain most of the day, so it seems like I'm really trying to do it on my own. We shall see. If I need the shot, I need it and I am fine with that.
Hopefully we will find out the results of the PET scan tomorrow, I know I will be calling. We want to hear just how much the cancer has shrunk. David is pretty anxious, more than I am. He needs the reassurance of some numbers, I think, and hopefully we will be able to give him that soon.
Thanks to the Fairchild's who brought over an awesome pot of spaghetti for us tonight. Garlic bread, even! I can't thank you enough. It was nice to not have to cook tonight, when I am feeling so sore and tired. I appreciate your kindness more than I can say.
Sunday, September 09, 2007
I have been pretty out of sorts this weekend. Just not feeling very energetic. A little, well, more than a little depressed. Bored. But I really haven't had the energy and will to do anything special. Especially in light of my whirlwind post-chemo-splotchy-memory week. I just needed to be low-key for a few days.
Yesterday, after most of a day of doing nothing, David and I decided to get Jackson out of the house for some play time. We have tried taking him to our neighborhood pool before, but he hasn't seemed to like to get in the water with us. Which is odd, because we hear so much from David's folks how much he loves to go swimming when they keep him. So we decided to try again. There is a little play scape at the pool area and in the past he would rather swing than swim.
So with no expectation either way, we loaded up the boy in the wagon, dressed to swim, just in case, and headed to the pool and park around the corner. And this time we were able to coax him into the pool with us and swim around for a bit. It felt good to be in the water and we had a good time with the boy.
I was a little self-conscious, because of my big bald head. I felt a lady watching me while I put sunscreen on it. A few little kids looked at me funny, but I was able to get over it and swim in my bald-headed glory anyway. Having no hair makes swimming easy. I didn't have wet hair clinging to my back or annoying me in any way...small victories, you know. Yada yada.
Speaking of small victories, I was looking at a few pics from earlier this year and came across this one from my Robin Hood Show at the Scottish Rite Theatre.
Here I am decked out as Maid Marian, having just finished signing autographs for the kids. And all I can think when I look at it now is "Holy shit, I look ill!" How did I walk around looking like that and didn't know I was that sick? That dress is hanging off of my shoulders. Attractive, really attractive.
In comparison, here is a photo taken on Thursday, with my Dad. I am pretty puffy in the face from the prednisone, but boy, I look a little less like death warmed over. Of course that blank look on my face screams chemo-brain, but still. The cure is better than the illness. When this is all over, I hope to be able to look at myself in the mirror and see someone healthy again. Not too skinny, not too puffy, not blank-faced or out of it. Just me. That will be nice.
Today I did pretty much nothing. Actually, that is not true. I read a book and played on the floor a whole lot with my son. I just enjoyed watching him today. I kept the TV off most of the day and just hung out with Jackson. It is so interesting how he keeps himself entertained. He rolls on the floor and looks at a toy really, really close up. Then he finds a small feather in the toy basket and blows it around the room for a while. And when he catches me watching him and smiling, he laughs and engages me and wants to play. So we played. I didn't feel up to getting out of the house today, or even getting dressed. But I did have a good time bonding with Jackson boy and trying to get him to tell me his name. He won't do it. He gets real shy if you ask him and smiles, but he won't tell you his name. Maybe tomorrow.
Tomorrow is my PET/CT scan. The eating restrictions today have been annoying. Low carb, no sugar. Blah. Hard to be restricted while the raging prednisone hunger screams in protest. So I am chewing gum. Cause I want to eat and protein is not a satisfying snack food. Cookies are. Ice cream is. Even the strawberries in my fridge are forbidden. Grrr. Tomorrow after the scan, I eat. Whatever I want. All day. So there.
Yesterday, after most of a day of doing nothing, David and I decided to get Jackson out of the house for some play time. We have tried taking him to our neighborhood pool before, but he hasn't seemed to like to get in the water with us. Which is odd, because we hear so much from David's folks how much he loves to go swimming when they keep him. So we decided to try again. There is a little play scape at the pool area and in the past he would rather swing than swim.
So with no expectation either way, we loaded up the boy in the wagon, dressed to swim, just in case, and headed to the pool and park around the corner. And this time we were able to coax him into the pool with us and swim around for a bit. It felt good to be in the water and we had a good time with the boy.
I was a little self-conscious, because of my big bald head. I felt a lady watching me while I put sunscreen on it. A few little kids looked at me funny, but I was able to get over it and swim in my bald-headed glory anyway. Having no hair makes swimming easy. I didn't have wet hair clinging to my back or annoying me in any way...small victories, you know. Yada yada.
Speaking of small victories, I was looking at a few pics from earlier this year and came across this one from my Robin Hood Show at the Scottish Rite Theatre.
Here I am decked out as Maid Marian, having just finished signing autographs for the kids. And all I can think when I look at it now is "Holy shit, I look ill!" How did I walk around looking like that and didn't know I was that sick? That dress is hanging off of my shoulders. Attractive, really attractive.
In comparison, here is a photo taken on Thursday, with my Dad. I am pretty puffy in the face from the prednisone, but boy, I look a little less like death warmed over. Of course that blank look on my face screams chemo-brain, but still. The cure is better than the illness. When this is all over, I hope to be able to look at myself in the mirror and see someone healthy again. Not too skinny, not too puffy, not blank-faced or out of it. Just me. That will be nice.
Today I did pretty much nothing. Actually, that is not true. I read a book and played on the floor a whole lot with my son. I just enjoyed watching him today. I kept the TV off most of the day and just hung out with Jackson. It is so interesting how he keeps himself entertained. He rolls on the floor and looks at a toy really, really close up. Then he finds a small feather in the toy basket and blows it around the room for a while. And when he catches me watching him and smiling, he laughs and engages me and wants to play. So we played. I didn't feel up to getting out of the house today, or even getting dressed. But I did have a good time bonding with Jackson boy and trying to get him to tell me his name. He won't do it. He gets real shy if you ask him and smiles, but he won't tell you his name. Maybe tomorrow.
Tomorrow is my PET/CT scan. The eating restrictions today have been annoying. Low carb, no sugar. Blah. Hard to be restricted while the raging prednisone hunger screams in protest. So I am chewing gum. Cause I want to eat and protein is not a satisfying snack food. Cookies are. Ice cream is. Even the strawberries in my fridge are forbidden. Grrr. Tomorrow after the scan, I eat. Whatever I want. All day. So there.
Friday, September 07, 2007
It has been a weird past few days. After the awful first chemo night and the shopping extravaganza on Wednesday, I find myself delirious and kind of disconnected. I am more than a little weirded out by the fact that I can't really remember all the details from this week. The mall trip is kind of hazy, did I really buy 6 pairs of pants in one day? Me? I think I applied for and got a New York & Co. credit card. A mall store credit card? Me? WTF? I remember getting pedicures but am not exactly sure that I paid for them. But wait, I remember giving a cash tip, so I must have paid. The certainly wouldn't have let me just walk out, right?
Wow, I don't remember when exactly my Mom was here last. I think she was here Thursday morning when my Dad arrived for duty. I vaguely recall hearing her talking to my husband before he left for work "Did she sleep?", was the question. "I think so.", was the answer. And pancakes. I remember pancakes. I actually don't remember much of yesterday. I actually have to sit here and think to remember what I had for lunch. I do remember, my Mom stayed with Jackson and Dad and I went to Firebowl Cafe. Maybe I am not as bad off as I thought. I am just having a hard time with the details and recalling things as if they actually happened instead of just remembered in this cloudy haze.
Too many drugs.
I am tired and irritated and I don't exactly know why. I feel cut off from my life right now. Not sure exactly what tomorrow brings. More shopping? I don't think so. The manic mall trip has possibly scared some sense into me. 6 pairs of pants? For a girl who works part-time and even parter-time than normal?
But I guess it didn't scare me too much because at my request, Dad took me to Target today on a quest for new pillow cases. For some reason I needed new pillow cases. I changed my sheets Tuesday morning in preparation for sick week and I realized how dingy and course and just un-pretty my pillow cases are. And I don't quite have enough of them to completely change the sheets and duvet without washing immediately. So off we went for pillow cases and my Dad helped me choose some very nice, soft 400 thread count new pillow cases and a couple of new pillows to boot. Why must I shop to connect myself to the world? I dunno. But I feel kind of bad about letting my Dad foot the bill for unneeded pillow cases because I need to get out of the house and take control of something - anything.
I feel like I need a few days off. Off from cancer, I mean. Off from sick and fighting and recovering and noise and everything. Off from wearing too much make-up when I leave the house so I feel pretty and hip and normal. Grrr. Here I am complaining.
I need to stop. I have taken my third round of chemo and have a PET scan Monday morning to see how far the cancer has shrunk. I am confident somehow that the scan will show good results; that chemo is working as well as we expect and that I am really halfway done with this treatment.
I guess I am just letting it wear me down tonight. I am entitled to a little break down, right? I am just not the kind of person that forgets the details of an entire week and I am not sure why it upsets me so much.
Thanks to my Mom and Dad for taking care of me and feeding me this week and to David for not even blinking at the sheer volume of pants that came home on Wednesday with me. Sorry about the credit card. Can't believe I applied for one. Guess that is why when I looked at my bank statement online this morning there was no charge from NY and Co. Freaked me out for a minute till I remembered. Oh yeah. Consumer credit card. Whoa.
Wow, I don't remember when exactly my Mom was here last. I think she was here Thursday morning when my Dad arrived for duty. I vaguely recall hearing her talking to my husband before he left for work "Did she sleep?", was the question. "I think so.", was the answer. And pancakes. I remember pancakes. I actually don't remember much of yesterday. I actually have to sit here and think to remember what I had for lunch. I do remember, my Mom stayed with Jackson and Dad and I went to Firebowl Cafe. Maybe I am not as bad off as I thought. I am just having a hard time with the details and recalling things as if they actually happened instead of just remembered in this cloudy haze.
Too many drugs.
I am tired and irritated and I don't exactly know why. I feel cut off from my life right now. Not sure exactly what tomorrow brings. More shopping? I don't think so. The manic mall trip has possibly scared some sense into me. 6 pairs of pants? For a girl who works part-time and even parter-time than normal?
But I guess it didn't scare me too much because at my request, Dad took me to Target today on a quest for new pillow cases. For some reason I needed new pillow cases. I changed my sheets Tuesday morning in preparation for sick week and I realized how dingy and course and just un-pretty my pillow cases are. And I don't quite have enough of them to completely change the sheets and duvet without washing immediately. So off we went for pillow cases and my Dad helped me choose some very nice, soft 400 thread count new pillow cases and a couple of new pillows to boot. Why must I shop to connect myself to the world? I dunno. But I feel kind of bad about letting my Dad foot the bill for unneeded pillow cases because I need to get out of the house and take control of something - anything.
I feel like I need a few days off. Off from cancer, I mean. Off from sick and fighting and recovering and noise and everything. Off from wearing too much make-up when I leave the house so I feel pretty and hip and normal. Grrr. Here I am complaining.
I need to stop. I have taken my third round of chemo and have a PET scan Monday morning to see how far the cancer has shrunk. I am confident somehow that the scan will show good results; that chemo is working as well as we expect and that I am really halfway done with this treatment.
I guess I am just letting it wear me down tonight. I am entitled to a little break down, right? I am just not the kind of person that forgets the details of an entire week and I am not sure why it upsets me so much.
Thanks to my Mom and Dad for taking care of me and feeding me this week and to David for not even blinking at the sheer volume of pants that came home on Wednesday with me. Sorry about the credit card. Can't believe I applied for one. Guess that is why when I looked at my bank statement online this morning there was no charge from NY and Co. Freaked me out for a minute till I remembered. Oh yeah. Consumer credit card. Whoa.
Wednesday, September 05, 2007
I have been savoring my recent Awesome Dude Blogger award and trying to decide how best to pass it on. And I have come to realize that the list of blogs that I read is quite limited. I know most of the bloggers personally. Also, there are only one or two examples of the true 'Dude Blogger' - erm, the blogger whose plumbing is different than mine. I also don't want this to become an award given to more than the occasional exceptional female, like my modest self, simply because I don't know a lot of 'dude blogger'
So here is your assignment. Nominate an awesome dude blogger (or two), preferably with outdoor plumbing to keep with the spirit of the guitar-playing-we-gotta-rock, award. Give me a brief description of why this dude is an awesome blogger, along with a linky or web address. This will give me the opportunity to meet new bloggers and add them to my page with a link. So now I'll have even more interesting midnight reading when the prednisone and the twitchies and other chemo ills leave me an insomniac. Incidentally, if you are a blogger and I don't know it, please send me a linky and nominate your own self!
So introduce me to your favorite awesome dude bloggers and I shall bestow upon one worthy dude the coveted award which is awesomeness!
Nominations due in 72 hours -Saturday night.
Hi all. Back from round three, day one chemo-hell, and proud to back amongst the living. The actual chemo infusion was good. I went in at 12:30 instead of my usual 9:00 because Monday was a holiday and there were doubling up. So my special corner was taken. But I still got a corner seat in the other semi-circle.
Sometime during my infusion, I got a delivery! It was so exciting. I got a bouquet of chocolate covered strawberries arranged in greens so they looked like rose buds. Tiffany and Chad, thank you so much. You made me feel very loved and special on a tough day. And the strawberries were enjoyed by all. I shared with the nurses and any interested patients. So, your gift made a lot of people happy. Thanks so much!
And another big, huge thanks go to Elaine and Andrea' who gave me a Creative Zen MP3 player for chemo days when I have to sit there being poisoned for almost 4 hours. I had such a good time jamming out to Guy Forsyth and all the great music you put on it for me! I sure enjoyed it. Till the battery went dead and I didn't have the charger. I'm an idiot. Still, a great gift from which I will get lots of use. Thanks ladies!
I was able to meet and talk to for the first time, a fellow chemo patient who was nearer my age. Very nice lady. She thought I was 15, and I thought she was 35. A compliment for both of us. But I confessed to 31 and she confessed to nothing. See? Her extra years brought her wisdom as well as a charming personality. Her name is Leslie and I hope I see her again on this grand chemo adventure. But I suspect she is a Monday, so I won't see her. It was interesting to talk to her briefly about how the family deals with us being sick. She has two college-aged kids and one 14-year-old daughter. Her daughter is having a hard time with it and keeps her eyes averted when Leslie doesn't wear a head covering of some sort. Must be hard to be 14 and trying to figure out how to be cool and who you are and realizing how much your looks have to do with how you are treated. And here she has this beautiful, young mother who has lost her hair and is sick all the time. And it is breast cancer. Very sad.
I didn't ask what her prognosis is. In chemo-world it seems there are certain rules and protocols. You are absolutely allowed to ask "What's your Cancer", sort of like "What's your sign." And "How many rounds you taking?" is equivalent to the jailhouse "How long Ya in for?" But I am beginning to understand that you don't ask someone, "so do they expect you to live?" It's like a Public Defender asking his client, "So didja do it?"
No, no, we ask about which cancer and what round are you in, and when did oyu lose your hair and how did they catch your cancer? Cause that is the truly fascinating part to many of us. We, who lived in a silent club for so long as if we were not contaminated with vile, dirty cancer that was killing us every day until someone said 'whoa wait a minute, beep, beep, beep, awuuga, awuuga!' Just like that. That is the exact set of nonsense noises I use to describe being diagnosed with cancer. Seems appropriate somehow, like a Loony Toons cartoon character eating a whole pepper and his face turns read and smoke comes out his ears. Yeah, something like that.
But I digress, I was saying that you don't ask someone if they're gonna live. I notice if things are going well, like for me, they tend to offer the good news. I offer up that I am going to be fine every day. Course I don't talk about that when facing a frail elderly person whose prognosis is clearly not like mine. It is a play-it-by-ear game. I want to talk to and support other cancer patients, but first I must learn to navigate the cancer minefield where some of the mines are marked cure, and other's death.
After my conversation about Leslie's older children and how it affects their lives, again I am happy that my son doesn't have to care right now that his mommy is sick. He may know something, but we have done the best we can to keep things normal and give him lots of love. He had his first trip to the hair salon with his Omi yesterday, who with lots of bribes (suckers, cars, etc...) managed to get a cute haircut on a two-year-old. Thanks for stepping up and taking care of us, everyone. We couldn't do this without you.
And holy crap what a night. Started feeling queasy around 5:30 and took the phenergan as planned. Minimal relief from the nausea, but then came the shakes, the wiggles, the awful buildup in each muscle that became unbearable til I moved. Jerked, kicked, squeezed myself into a ball, etc. So then Mom had me down the foul-tasting liquid Benedryl that was supposed to counter the twitchies. Didn't help, possibly made it worse. So I was still nauseated, still twitching uncontrollably and now wired. Miserable night. I took the Ativan at bedtime with more phenergan and Benadryl and hoped the Ativan would knock me out. I think it may have helped me drift off, but the off into which I drifted was not sleep. I spent the next few hours alternating between the twitches, kicking & jabbing David on accident, and the quiet rest of hallucination. My dreams or hallucinations were mundane - me reading my book in bed and yelling at David to move so I could turn the page. I was talking in my sleep and I didn't know why I was saying what I was saying. So I'd chuckle and that would wake David up. And still I did not sleep; I hallucinated, and tripped and twitched.
I finally got my mom to help me at about 4:30. She let me in the guest bed with her and tried ways to counter the twiching - sitting with my legs curled under me helped for a minute, but then my feet fell asleep and that woke me up. So She put me in a hot bath for half an hour and that seemed to calm things down enough for me to sleep an hour or so in her bed with her. But when the twitchies returned, I said 'Screw It.' And just got up for good.
Mom was sure pooped though, I got a pic of the hardest working nurse I know. If I had The Holmes' skills, there'd be a thought bubble in there somewhere. oh well.
I took a little nap mid-morning and when I got up, was feeling pretty good considering the lack of sleep etc. And since Jackson wasn't due back till this evening, I made the command decision to go shopping! Yay retail therapy! I need new pants and jeans pretty badly, so we thought an outing to the mall was just the thing. Well, I thought it was, Mom thought it would be best for me to be on the couch today. But I won in the end and I am glad we went. Yes, I spent money, but also I think the being out and walking and among people was good too. And I got some nice pants and most won't even need hemmed.
And I coerced my mom into having her first pedicure. She's never had one and I thought that was just wrong. So we both had pretty new pedicures. I have decided this should be an after-chemo treat for the two of us for the rest of this adventure. We deserve it.
Tomorrow, Marsha & Jackson-watching duties belong to Shift Thursday/Friday - the great Vic Kysor (AKA Daddy, Dad, Diddy and occasionally, asshole). See you tomorrow Daddy! Love you!
Sometime during my infusion, I got a delivery! It was so exciting. I got a bouquet of chocolate covered strawberries arranged in greens so they looked like rose buds. Tiffany and Chad, thank you so much. You made me feel very loved and special on a tough day. And the strawberries were enjoyed by all. I shared with the nurses and any interested patients. So, your gift made a lot of people happy. Thanks so much!
And another big, huge thanks go to Elaine and Andrea' who gave me a Creative Zen MP3 player for chemo days when I have to sit there being poisoned for almost 4 hours. I had such a good time jamming out to Guy Forsyth and all the great music you put on it for me! I sure enjoyed it. Till the battery went dead and I didn't have the charger. I'm an idiot. Still, a great gift from which I will get lots of use. Thanks ladies!
I was able to meet and talk to for the first time, a fellow chemo patient who was nearer my age. Very nice lady. She thought I was 15, and I thought she was 35. A compliment for both of us. But I confessed to 31 and she confessed to nothing. See? Her extra years brought her wisdom as well as a charming personality. Her name is Leslie and I hope I see her again on this grand chemo adventure. But I suspect she is a Monday, so I won't see her. It was interesting to talk to her briefly about how the family deals with us being sick. She has two college-aged kids and one 14-year-old daughter. Her daughter is having a hard time with it and keeps her eyes averted when Leslie doesn't wear a head covering of some sort. Must be hard to be 14 and trying to figure out how to be cool and who you are and realizing how much your looks have to do with how you are treated. And here she has this beautiful, young mother who has lost her hair and is sick all the time. And it is breast cancer. Very sad.
I didn't ask what her prognosis is. In chemo-world it seems there are certain rules and protocols. You are absolutely allowed to ask "What's your Cancer", sort of like "What's your sign." And "How many rounds you taking?" is equivalent to the jailhouse "How long Ya in for?" But I am beginning to understand that you don't ask someone, "so do they expect you to live?" It's like a Public Defender asking his client, "So didja do it?"
No, no, we ask about which cancer and what round are you in, and when did oyu lose your hair and how did they catch your cancer? Cause that is the truly fascinating part to many of us. We, who lived in a silent club for so long as if we were not contaminated with vile, dirty cancer that was killing us every day until someone said 'whoa wait a minute, beep, beep, beep, awuuga, awuuga!' Just like that. That is the exact set of nonsense noises I use to describe being diagnosed with cancer. Seems appropriate somehow, like a Loony Toons cartoon character eating a whole pepper and his face turns read and smoke comes out his ears. Yeah, something like that.
But I digress, I was saying that you don't ask someone if they're gonna live. I notice if things are going well, like for me, they tend to offer the good news. I offer up that I am going to be fine every day. Course I don't talk about that when facing a frail elderly person whose prognosis is clearly not like mine. It is a play-it-by-ear game. I want to talk to and support other cancer patients, but first I must learn to navigate the cancer minefield where some of the mines are marked cure, and other's death.
After my conversation about Leslie's older children and how it affects their lives, again I am happy that my son doesn't have to care right now that his mommy is sick. He may know something, but we have done the best we can to keep things normal and give him lots of love. He had his first trip to the hair salon with his Omi yesterday, who with lots of bribes (suckers, cars, etc...) managed to get a cute haircut on a two-year-old. Thanks for stepping up and taking care of us, everyone. We couldn't do this without you.
And holy crap what a night. Started feeling queasy around 5:30 and took the phenergan as planned. Minimal relief from the nausea, but then came the shakes, the wiggles, the awful buildup in each muscle that became unbearable til I moved. Jerked, kicked, squeezed myself into a ball, etc. So then Mom had me down the foul-tasting liquid Benedryl that was supposed to counter the twitchies. Didn't help, possibly made it worse. So I was still nauseated, still twitching uncontrollably and now wired. Miserable night. I took the Ativan at bedtime with more phenergan and Benadryl and hoped the Ativan would knock me out. I think it may have helped me drift off, but the off into which I drifted was not sleep. I spent the next few hours alternating between the twitches, kicking & jabbing David on accident, and the quiet rest of hallucination. My dreams or hallucinations were mundane - me reading my book in bed and yelling at David to move so I could turn the page. I was talking in my sleep and I didn't know why I was saying what I was saying. So I'd chuckle and that would wake David up. And still I did not sleep; I hallucinated, and tripped and twitched.
I finally got my mom to help me at about 4:30. She let me in the guest bed with her and tried ways to counter the twiching - sitting with my legs curled under me helped for a minute, but then my feet fell asleep and that woke me up. So She put me in a hot bath for half an hour and that seemed to calm things down enough for me to sleep an hour or so in her bed with her. But when the twitchies returned, I said 'Screw It.' And just got up for good.
Mom was sure pooped though, I got a pic of the hardest working nurse I know. If I had The Holmes' skills, there'd be a thought bubble in there somewhere. oh well.
I took a little nap mid-morning and when I got up, was feeling pretty good considering the lack of sleep etc. And since Jackson wasn't due back till this evening, I made the command decision to go shopping! Yay retail therapy! I need new pants and jeans pretty badly, so we thought an outing to the mall was just the thing. Well, I thought it was, Mom thought it would be best for me to be on the couch today. But I won in the end and I am glad we went. Yes, I spent money, but also I think the being out and walking and among people was good too. And I got some nice pants and most won't even need hemmed.
And I coerced my mom into having her first pedicure. She's never had one and I thought that was just wrong. So we both had pretty new pedicures. I have decided this should be an after-chemo treat for the two of us for the rest of this adventure. We deserve it.
Tomorrow, Marsha & Jackson-watching duties belong to Shift Thursday/Friday - the great Vic Kysor (AKA Daddy, Dad, Diddy and occasionally, asshole). See you tomorrow Daddy! Love you!
Monday, September 03, 2007
So the last two days of freedom have been pretty full. Had a few friends over yesterday for way too much BBQ and dessert. It was good to spend time with my Dad and to meet his friend, Mary. He is sucha good cook, we all ate too much. Jackson once again immediately insisted upon kissing the pretty little girl who came to visit. Seriously gonna have to talk to the boy about boundaries and personal space. He can't just be kissing all the girls he meets, especially because once he reaches kindergarten, their zero tolerance policies will put him in jail. But Johanna took it politely and didn't yell or bite him or anything. Just asked for the temporary use of one of his balloons and maybe a car or two. Sharing is another thing we need to learn.
Today we took Jackson to David's folks house in Harker Heights to spend a few days while I have chemo. He was not at all upset to see us leaving. Could hardly be bothered to say 'bye bye'. But with fun like this awaiting him, who cares about the boring old parents? Grandpa and Omi are the best.
Susanne took the sweetest pic of him on the slide. So cute. Such a little boy. I miss him already.
After a brief nap, David and I met Elaine and Cliff and Jennifer at the Alamo for a movie. We saw Black Sheep. Think Shaun of the Dead, except instead of zombies, it's genetically altered sheep attacking the wisecracking characters. Very funny. I was a little skeptical, but thought what the hey, I need the night out before chemo tomorrow. It was gorier than I liked, but not really designed to be scary, just to make you go "ewwww grosss." And we did. I am glad we went and had fun. And I am sorry I yelled at Cliff for showing up 10 minutes before the movie started. We were holding seats and it was getting pretty tense with it being sold out and people really wanting those seats. But I shouldn't have snapped at him. Pretty sure he forgave me, but still.
So tomorrow at 12:30 I go in for round three of chemo. Sigh. I wish I didn't have to. Don't really want to. Blech.
But I will be fine, I am sure. Going to lunch with my Mom before we go. I'll try not to stuff myself. Don't want to make myself sicker than I have to be. I wonder if going in after lunch will make an impact on how I feel tomorrow evening. I have a new drug to try - Ativan. And I think the plan for that is to knock me out. So it may be that I get home late afternoon, start feeling sick a few hours later, then take the Ativan and sleep through the worst of it. Wouldn't that be nice? We'll see how it goes. I need to remember to take my cinnamon gum with me since you start tasting the horrid chemo about an hour into it. Sigh. Tomorrow.
Saturday, September 01, 2007
Just got home from seeing Lend Me a Tenor at the Palace. Mary Ellen called out of the blue this afternoon to see if David and I wanted to go to the show cause she was willing to babysit. So we took her up on it and went. It was a good show and we had fun seeing friends and just getting out of the house together. Thanks to Mary Ellen and family for thinking of us and letting us have a night out.
Speaking of nights out, I mentioned in my last post that I was going downtown to see some music last night. Well, we had a change of plans. I made it to the opening night party for Tenor and Kim met me there as we had planned. But when it came time to head to Austin, she told me that she didn't feel right about going. What happened? My Mom happened. She talked to Kim about my condition and must have made me sound so weak and frail and whatnot, because Kim was afraid if she took me downtown, I might get sick and she couldn't live with herself if that happened. I think the conversation about chemo and what it does to a body must have spooked her. Mom swears she didn't mean for Kim to not to take me, she was just telling her a little about my cancer treatment. Still, it must have sounded bad and upset poor Kim. So I didn't push it, though I really did feel up to going and it would have been fine.
Kim and I went to Saltgrass instead and we had a good time talking and getting to know each other better. We need to spend more time together since in a just and non-discriminating world we would be stepsisters. I had a good time, Kim, and next time you come down, we are going to the Saxon Pub to hear music. And we can ask my mom if it is ok first, if that will make you feel better, but the Saxon Pub has chairs and tables and they have lots of 8:00 p.m. shows, so we won't have to be out so late if we don't want to. But I am not wearing a mask. I don't want to live like Michael Jackson, for goodness sake. Ok, well, maybe the money and world travel and mansions would be nice. But not the mask wearing, nose-job getting, probable child-molesting part.
I must say thanks to The Holmes for naming me the winner in his Awesome Dude Blogger contest. Seems he is just as big a Battlestar fan and appreciated my recasting of Star Wars. So now it is up to me to hold some kind of contest and pass on the coveted award. Now I just need to decide what to do! Stay tuned for contest announcements!
Speaking of nights out, I mentioned in my last post that I was going downtown to see some music last night. Well, we had a change of plans. I made it to the opening night party for Tenor and Kim met me there as we had planned. But when it came time to head to Austin, she told me that she didn't feel right about going. What happened? My Mom happened. She talked to Kim about my condition and must have made me sound so weak and frail and whatnot, because Kim was afraid if she took me downtown, I might get sick and she couldn't live with herself if that happened. I think the conversation about chemo and what it does to a body must have spooked her. Mom swears she didn't mean for Kim to not to take me, she was just telling her a little about my cancer treatment. Still, it must have sounded bad and upset poor Kim. So I didn't push it, though I really did feel up to going and it would have been fine.
Kim and I went to Saltgrass instead and we had a good time talking and getting to know each other better. We need to spend more time together since in a just and non-discriminating world we would be stepsisters. I had a good time, Kim, and next time you come down, we are going to the Saxon Pub to hear music. And we can ask my mom if it is ok first, if that will make you feel better, but the Saxon Pub has chairs and tables and they have lots of 8:00 p.m. shows, so we won't have to be out so late if we don't want to. But I am not wearing a mask. I don't want to live like Michael Jackson, for goodness sake. Ok, well, maybe the money and world travel and mansions would be nice. But not the mask wearing, nose-job getting, probable child-molesting part.
I must say thanks to The Holmes for naming me the winner in his Awesome Dude Blogger contest. Seems he is just as big a Battlestar fan and appreciated my recasting of Star Wars. So now it is up to me to hold some kind of contest and pass on the coveted award. Now I just need to decide what to do! Stay tuned for contest announcements!
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