Thursday, April 30, 2009
I'm not mad at anyone, nothing triggered the tirade - it's just a culmination of months of this BC stuff and railing against the fates.
It also embodies how I feel about insensitivity, lack of empathy, exclusiveness, and lack of tact. People suck sometimes and they suck worse when you have cancer. We're hypersensitive, because our emotions are raw almost all the time. Being tolerant is a damn strain.
So no, I'm not angry. No, I don't feel like I got it off my chest. I wasn't mad to begin with. Actually, I will say the trigger might've been washing my hair yesterday. It brought to mind something from a few months ago - someone said something to me about having no hair. Along the lines of "think of how much money you're saving on shampoo." Ok, sure and I bet it's adding up in comparison to the $1000s that are being spent on my care. Do I CARE about shampoo?
Anyway, I'm not mad, per se. I'm mad at stupidity.
On to the real life. Sit down for this one.
Stef's softball team won last night. 9-0. We were shocked, as in bug-eyed because these girls have shown a complete lack of concern, effort, listening skills, motivation, absorption and just about everything else. Now admittedly, the other team wasn't that great but at least they could field. Bill and I were so excited we chattered about the game until 2 a.m. We couldn't sleep because we were so happy for them.
We got skunked the first 2 games, by numbers that are too high to mention. Last night was a nice surprise and all because 2-3 girls decided to take the bull by the horns and be leaders. It was great. In the rain, no less.
Want some funnies? We had our very first run of the night taken away because the player walked in from 3rd and didn't touch home plate - she just headed back to the bench. The look on Bill's face was absolutely priceless. He was no less than stunned. I guess we assumed they knew to touch the plate. So every walk after that, everyone chimed in with "Touch the plate."
A few kids asked if they could wear raincoats on the field. We checked and the ump said okay. (There wasn't a wall nearby to slam my head against!) So we're ready to field and I pipe in with, "You know, you're raincoat will be ruined from the infield dirt. It doesn't come out." Off fly four pink and purple jackets at record speed.
Our pitcher won't wipe off the wet softball on her pants or jersey. We laugh uproariously at this, of course when the girls can't over hear.
We had a tag - a TAG to get someone out. Bill and I were jumping around we were so happy. Why, you ask? Because up until last night, we never even got a person out. Throwing to base, tagging, or catching a pop. All was completed with aplomb last night and we have NO IDEA WHY.
On the Stef front, we have an appt. with a pediatric urologist tomorrow. Her infection is back and she had a regular pediatric appt. on Tuesday. She's just okay, not great and has missed some school this week due to the appts and stomach upset from the antibiotics.
I'm down to one scab on my tata - healed up almost completely. It's still tan in color but for the most part, I'm healed. The inside swelling seems to have lessened quite a bit. And my lymphedema is less.
The hip pain is quite awful. Not constant but it feels like a grinding when I stand up or try to roll over in bed. If you've ever had bursitis, it feels like that. Pain patch isn't making much of a dent but it manages it a little.
I'll confess what everyone else might not be willing to confess. I'm a little worried about the swine flu. Me and my beleaguered white blood cells aren't up to pig wrestling right now.
Be well everyone. Hugs to my longtime blogging friends and hellos to my new friends. Hello Ernie in France :) I hope you all don't think I'm a psycho crazy woman. I just tend to speak my mind, as many of you know :)
Wednesday, April 29, 2009
It should be common sense that cancer patients need an extremely clean environment. It's a given, right? So why do we need to remind everyone? Is it because everyone is so self-absorbed? I think so.
After 8 continual months of treatment, I AM NOT okay right now. I don't feel well, I'm tired, I have bone pain, I hate my lack of hair - in short, I feel like crap. It's better than last week but it by no means is good. I'm disgusted with all this and the seemingly never-ending feeling of being sucked into a quagmire. It's gotten REAL old at this point.
Every time I think of cancer cliches, I see red. The dumb things people say just never ends. This isn't because it's happened to me lately. It's just principal. Why should we have to rant against the stupid things people say to us as cancer patients? Aren't we going through enough already? The excuse of "they just don't know any better or even what to say" is just that - an excuse. Get a grip. Next time someone tells me something, I'm going off. Be warned.
Forrest Gump's Mom had it right - stupid is as stupid does. This is taking up a full chapter in my book.
I watched Steffie crush multiple boxes so I could get the recycling together yesterday. We had a mound of boxes because we missed last weeks pickup. What I really imagined was her crushing hundreds of pink ribbon lapel pins and frou-frou pink BS that drives me crazy. Bonfire, here I come.
Hello? Where did everyone go? I'm not okay. Repeat after me - I'm not okay. Everyone who cares for someone who has cancer needs to get a fricking grip and realize the fun and games don't end when treatment finishes. The hell just begins and a helping hand would be greatly appreciated. Fatigue sets in with a vengeance, motivation and self-esteem crashes. Recovery seems like an endless abyss after going through the hell of 8 months of surgey and treatment. And guess what? You have to live with the fact that you didn't help, you were too busy, you were afraid to address your own fear of cancer. YOU. Can you deal with it?
Don't lie to me. I know I look like a cancer patient. I just finished treatment, for God's sake! Remember my beautiful long hair? It was long for a reason - because I looked good that way. I don't look good with short hair. It sucks. Along with the plethora of other physical stuff that isn't the same, believe me, you don't want to mention this to me. Not a good idea.
My kids have a mother who is recovering. For God's sake, cut them some slack. They live with me and while I try to keep things normal, things aren't normal and haven't been for awhile. Seeing a parent in pain regularly and sick is rough on a child. Please keep you own child from harassing my kid over stupid stuff. Or you're gonna hear it from me. Keep your own and your kid's petty bullshit to yourselves. If you can't, then I will do it for you.
Oh yea, and guess what? You can feel like shit and still be an effective parent. Let ME discipline my own children, MY WAY. Guaranteed my kids are better behaved and more aware of proper behavior than yours. Why is that, you say? Because my kids know about compassion, something sorely lacking in this world today. And my kids know I'm their PARENT first and then their friend. And guess what else? Their meltdowns have a reason - a sick parent. Your kid's melt down just because you're a crappy parent.
Don't address what is different about me. Believe me, I know it. I don't want to hear how you're losing weight. Try taking 4 months of steroids and see if you've retained your figure. Throw in some Tamoxifen and then we'll talk. I'm exercising every day. I'm toning muscles that haven't been used for anything other than sleeping for 8 months. Get a fricking grip. At this point, I don't care if you look like a Vogue model.
My boobs aren't an issue. Everything else is. Kindly move your eyes above chest level and look me in the eye. If you want to see the results of breast cancer, I'll gladly show you. I lost my modesty months ago.
God help the policeman that stops me because I don't have the chest strap across my chest when driving. And God help Md's governor Martin O'Malley if I get a ticket. I use the lap belt only, I'm an adult, and I pay my taxes. It hurts my boob. Wanna see why?
Cancer isn't free. It costs money. Copays and prescriptions cost a ton of money I would otherwise be spending on my kids. I don't have anything extra. So spare me your own "I'm poor" pity party. Trying spending your vacation money and savings on drugs and copays that you will never see again. All to keep yourself alive. It's great fun. I'm thinking my out of pocket expenses exceed $4000 for a one-income family. My medical treatment has to be over $500,000. Yes that's five hundred thousand. Try having that hanging over your head for awhile and then we'll talk about money.
Wigs suck. They aren't an answer to missing hair for me. Don't ask me anymore why I don't wear my wig. It's hot as hell and makes me have hot flashes on top of my hot flashes. I don't look like me at all. Add that to the bonfire.
Don't you dare take my picture. This is my nightmare, my life, and my body and mind that have been trashed and dragged through the mud. It's not cute, I don't care how cuddly it is - I want nothing to remind me of how shitty I look and how shitty I feel. It's beyond unkind and no one should take a cancer patient's picture unless they ask. Call it vanity or whatever. Take a walk in my shoes for awhile - a real walk for once. Get into the nitty gritty of imagining how YOU would feel in my shoes. And use your God given common sense.
I'm entitled to my pity party. Try waking up everyday, knowing you've had cancer, are going through treatment or on the road to recovery. Try having a daily reminder that your femininity has been shredded and you feel like shit. Try living with the knowledge that you face this beast every day and that it might end your life. Recovery involves both the physical and mental coping and IT IS NOT EASY. If you can't deal, then go away. Literally.
Tuesday, April 28, 2009
Sunday, April 26, 2009
Jackie was sporting a 103 degree fever yesterday. Out of the blue. Swollen neck glands too. She was lethargic and lost her appetite. Not my Jackie at all.
So here's my baby, sick and whiny and droopy. And I'm at war with myself on whether to snuggle her and comfort her as she was feeling puny. Of course, I did. I didn't really hesitate at all. But I don't want to get sick and my immunity registers at the "I suck right now" level.
Luckily, I'm not the fever type. She is though. And this morning, she's saying her nose hurts. I have never heard of such a thing. She's holding a wet paper towel to the outside of her nose. For the life of me, I just don't know what this means. It's almost funny it's so bizarre. Should I wake up Bill? I asked her if it hurts inside and she adamantly tells me no. I'll keep you posted on Jackie's nose.
Her fever is down. Tylenol suck for fever reduction but it's all she can have. We suspect my use of ibuprofen when she was a teeny baby may have caused an intussusception (fold of the intestines). So my arsenal of meds has definitely been reduced.
My kids also do the funky thing of having an alcohol smell to their breath when they are sick. It's ketones or somesuch, as explained by the Doc. A good indicator that they are sick. Like a red flag flailing in front of a bull.
If anyone has any opinions on Jackie's nose, I'm open to help with this. She definitely didn't put anything up there and she did have a runny nose yesterday.
I'm going to enter my plastic bubble now ;)
Thursday, April 23, 2009
Had a oncologist visit yesterday and a blood draw. Got my tamoxifen prescription. Not sure how I feel about that with the host of side affects. Will keep you posted on that. All I need is a few more hot flashes to brighten my day.
The scoop is this. I'm done. Cut loose after one month of taking T to check my liver enzymes. My oncologist does marker tests so I will see him every 3 months for however long he feels I need to. I'll be on the T for 5 years.
One thing did come up with my question about estrogen positive tumors. I asked about my girly parts and why that wasn't being removed too. He said that is something we'll address later but than the body needs some estrogen at my age. Sue, maybe you can help me understand this. Are ovaries typically taken out of estrogen positive patients?
Apparently, these next 6 months will glean whether I'm menopausal or sterile. Sounds like fun.
I get to keep my pain patches, for now. Dr. K is always positive and seems to think this arthralgia will go away. I remembered the name!! Maybe not spelled right but I don't care - it's my blog anyway. Back to Dr. K - he wants me to be comfortable to recover and also wants me exercising. So I am. Good bunny that I am...
I didn't realize the fentanyl is such a strong drug until my visit yesterday. Even at a low dose, it gives serious withdrawal symptoms. Guess that might be why I couldn't sleep last week when I dropped my patches. Learn something every day.
BP was a kicking 90 over 77 - back down almost to normal for me. I did get Dr. K's okay to just hang with him for a long while so I don't need another checkup with my GP. I do have to do a yearly gyn exam in July. The panic monkey sometimes rears her ugly head and worries about errant cancer cells ending up on my cervix. I had dysplasia for about 6 years after Steffie was born but I've had clear paps for the last 5 years.
Head is on straight, focus is coming back. Cranked out 17 articles this week and I'll actually get a small paycheck friday. I did sell a whopping real estate article last week - $200 for an article is very good as a ghost writer. Sure made me happy. I'm hoping my productivity level keeps up. I need to get out of my hole here and back on track with the rest of the world.
I gotta admit, even though I'm done, I'm almost phobic about germs. My counts are doing better but things just SO gross me out now. Like door handles, shopping carts, snotty kids (even my own), public anything. Yuck.
Still wondering if I'm going to get depressed. Haven't seen it yet.
I also get cut loose by my rad nurse on Monday if my tata heals up. The burn is down to 2 x 1 inches and is starting to scab. Airing it out and not using the shower or getting it wet has made all the difference. No, I'm NOT stinky! I'm taking a tub bath instead :)
I conducted an experiment at Vicky's request. I applied Aloe straight off the plant to my burns Tuesday night. Overnight, OVERNIGHT, the burned area began to scab and heal over. It easily improved by 1 cm around the circumference. Since then, the sticky wound feel is gone completely. This thing has dropped from being 5 inches around to well below half that.
My supposition as to why radiation specialists don't want women to use this is that the ointment given for open wound treatment contains antibiotics. I get it but I do know the aloe made a miraculous difference. I'm using it multiple times each day. Good thing the plant is big :)
I didn't get the impression that many people blister as badly as I did. The healed skin looks pretty tan at this point and they tell me it will lighten to regular skin color. Not quite sure if I believe them yet :)
Be well everyone. Have a good day!
Tuesday, April 21, 2009
My hair seems to be at about 1/2 to 3/4 of a inch. I think I rub nioxin more on the top than the sides so it's growing better up there. I've since figured out I need to pay more attention when I'm getting ready for the day and I'm spreading it more evenly around my head. My prediction? I'll be buying my first box of hair color in a month. No WAY am I paying my wonderful hairdresser $180 to color the twigs of my hair.
Eyebrows are back but all over the place. Before this, I was blessed with the most perfectly shaped eyebrows. Maybe 4-5 plucks of hair each week and zoom! Not so right now. They're all over the place. And spiky in places. I don't want to even try to shape them until things straighten themselves out.
Drumroll!!!! I have eyelashes. Very thick ones. Coming in pretty well here. Bill seems to think they are about halfway back but he lost his glasses. He doesn't see up close to well and being the great guy he is, he might just be full of malarky. You know how people hold a book or paper far away to read? That was Bill checking out my eyelashes last night. Pretty funny :)
Nails are a mess. They lasted all the way through chemo and cracked and peeled at my radiation midpoint. The horizontal ridges are about halfway up the nailbed now. I guess the nail will strengthen when it completely replaces itself. I also noticed they aren't growing as quickly as they did during chemo. Splitting and peeling but not discolored under the nail. I got lucky (Renee - I hope yours are healing!)
Now my big toe nail is another story. It's gonna do something but I don't know what. I covered it with fire engine red nail polish so I don't worry about it. And that works just fine with me.
This whole thing is quite degrading. I'm sitting here thinking of Armand and how he said after treatment, he plans to make "cancer his bitch." Well, right now, I'm still cancer's bitch. And while this makes me smile (Armand, all DAY I've been thinking of this and smiling - I even told my Mom!) I'm heading away from this worry but slowly. A most frustrating situation for a Type-A personality such as me.
Giving a shout out to wonderful Sue who FINISHED RADIATION TODAY!!!!! Thank God you're finished, Sue. Just Thank God!!
Thank you, my wonderful blogging friends. I sincerely think all of us together are working to keep each other out of therapy!
I haven't graduated yet from BC patient to real person again. Maybe that will miraculously happen when I take my first tamoxifen pill. Or maybe when my fried tata heals enough for me to not require burn treatment anymore. I do that tomorrow again as well as keep Mom company during her own chemo treatment. Love to visit the gals on the ward. A truly inspiring bunch of people!
I get to go see the vampire on Wednesday for a blood draw (hi Walter if you're reading this - I will bring candy!). Then a meeting with the oncologist. Don't know what he'll say or do but Bill will be there. He checked me out a few weeks ago so I can't imagine it will be more than getting a script and giving blood.
I found the recipe to curing the open burns on my chest. First, the burns come from what is called a boost - a concentration of chemo on the tumor spot. They used something called a bolus (??sp) to draw the radiation to the surface. All this equals fried tata.
TMI alert - don't read if you can't handle the deets.
So here's another friendly tip from your friendly neighborhood breast cancer unsolicited advice department. Burned tatas heal faster when you stay out of the shower and expose them to air. I started sleeping with chest exposed friday night. The burns almost cured overnight. Then dumb me gets into the shower and ruins all the hard work I did while sleeping. So it's tubby time and no water on my right boob until this thing cures up. If this falls under the TMI, sorry. Just passing along the minutae that now forms the basis of my life.
Bone pain report: it still hurts like an SOB in my hips. Still on one pain patch. And I'll report that I had excruciating bone pain from the mid-shin down to the ankle. It was like Edward Scissorhands was carving up my shin bones. Not happy about this unknown side effect of Neulasta or chemo or the evil black cloud that is hanging over my head.
I'm done. Good night - love to you all.
Friday, April 17, 2009
Yes, drama. A big surprise, right?
In the form of someone hacking into Steffie's AIM account, changing her password, and apply for identity on a Bebo account (AOL's version of myspace). This person sent out a whole bunch of e-mails and who knows what else. So I cleaned this mess up and contacted Bebo to blast them for allowing this kind of crap. We'll see where I get with that.
It is extremely difficult to get a kid to understand that they aren't anonymous on the computer. And that giving a password to your BFF is still dangerous - not because that child can't be trusted but because we don't know the security situation on her friend's computers. Argh! Logic doesn't prevail sometimes, no matter how hard I try. My fuse is very short these days so I'll only explain 5 times before I blow my top. As opposed to the dozen times I would explain before.
It's the arguing back that makes me nuts. I have a bar of soap with her name on it and she knows it now. Maybe she'll remember the taste of Dove soap instead of me asking her to be respectful and reasonable.
We're gearing up for a busy day on Saturday. Stef's first softball game and her party - her first with boys and girls. She's very excited and we're having it at my Mom's house. We spent the day cleaning and moving stuff around so there's plenty of room to dance. I'm just wondering if they actually will dance :) They always eat so at least we can keep them occupied with that if some of them go shy on us.
Jackie is extremely excited about this party because she gets to see all Steffie's friends. She loves friends. I think of Jackie going full time to preschool next fall with very mixed feelings. I was hoping to relish this year with her going part time - just Jackie and Mommy time before she really becomes a big girl. This whole year has been ruined, and our M&J time, by breast cancer treatment. It's one of those things I have to accept but it makes me extremely angry when I think about it.
So I'll stop thinking about it.
Wednesday, April 15, 2009
When I think of this long road to recovery, I have to say that the driving force for me from the very beginning has been to be able to help my own girls if they ever have to face the cancer monster. I don't want them to be alone. I want to be with them every step of the way 20, 30, or 40 years from now. Steffie had great fear that my cancer and my mother's BC 6 years ago meant she would absolutely get cancer. Of course, this isn't true and although we've told her, this lurks in her mind.
I don't want her to be afraid. I want her to live and enjoy her childhood. I want her to have her mother back the way I was before. I know that's not physically possible but I so want cancer not to rule our lives anymore. I don't have high expectations for a fast recovery. I'm taking my time. I just want to know that there's an end to the road.
I took the excessive but I feel, quite necessary step of having an elective left mastectomy to prevent revisiting this nightmare in the future. I gotta admit, I'm gonna be downright pissed if this cancer comes back. I mean, LIVID. If that seems dumb, then so what?!
I've been calm, except during my princess moments. I don't cry, unless I've got a damn good reason. I've managed to be alone with myself and not freaked out for about 3 months now. Coping is something I can do. I just don't want to ever, ever revisit this time in my life again.
That's a conundrum because my Steffie has been growing and changing right before my eyes during the biggest crisis of my life. So has Jackie. So has Kate. And while I feel the immense pressure to blot these months of my life out, I can't because of my kids. I don't want to forget these important days, their important achievements, or the daily changes in their lives. Steffie is growing into a delightful young lady. Jackie is becoming such a big girl and Katie, she's such a good student - she's just amazing. Watching her work her way into adulthood, making decisions, and still realizing she needs us to help sometimes warms both Bill and me deeply.
I need to figure out the answer to my question of how I save these memories and pack away the ones I'm tired of - the cancer ones. Maybe there's a recipe somewhere...
Monday, April 13, 2009
My right boob is fried. A lovely hot magenta. And it's raw and oozy.
So I'm in one of Bill's t-shirts and I shoved a little heart-shaped pillow up my (his) shirt to make a pillow tent. Keeps the fabric from rubbing against my chest :)
Alternative uses for all the pillows I got on the infusion ward.
See? I'm all for passing along every kooky coping tip I can come up with :)
Sunday, April 12, 2009
The fun part has been the skin sticking to my camis. That's been a hoot. So I glopped my silvadene creme on it and covered my poor robo tata* with gauze. Now the gauze is sticking to it. I need to make a boob tent on the front of my shirt so nothing touches my chest. Anyone got any ideas? (*term shamelessly stolen from Kathy)
We had a fun day with eggs (lots, and lots of eggs) and family time. I imagine we probably exceeded the acceptable level of jelly beans that one person should consume in a days time many, many times over. But the girlies had fun, the dogs didn't get into the chocolate, and none of us have thrown up. Easter is fun for mommy and daddy too.
I'm still waiting for the letdown - ain't seen it yet. Hoping it doesn't happen since I really want to get back on track with life as it should be. I'm sure I'll be most frustrated by fatigue but I have a plan. It's simply instituting my plan that might be a challenge. I do know from Kathy and Renee that fatigue from this can be debilitating and quite disruptive. I'm learning from what both these dear friends have gone through and taking it easy. I think the biggest detriment to a cancer patient is expecting our energy levels to be what they were before poisons and chemicals were pumped into our systems. Add being cooked like a well-done steak and it isn't a merry picture.
So where do I go from here? I'm intending to deeply investigate the dietary needs of a recovering BC patient and I'll post my findings. I'm heading first for a book written by a phenomenal lymphoma success story. This man was given 6-8 months to live and chose to evaluate every piece of information he could about diet affecting cancers. Sixteen years later, he wrote his book. For the complete life of me, I cannot remember his name. I know it's hypenated :) Chemo brain again.
I just had a little epiphany and remember the guy's name. Here's his book: http://www.amazon.com/Anticancer-New-Life-David-Servan-Schreiber/dp/0670020346
Heading to the bookstore this week to pick up a copy. I did alot of investigation when my mother was diagnosed. It's very telling that in many other countries the BC rate is so low. This has to be diet related but also the genetic effects of diet over many generations. Our crappy American diet is giving us disease after disease. It's time for me to wake up and listen. I think this book might be a good place to start the next step of this journey.
Happy Easter everyone!
Friday, April 10, 2009
SO I'm looking for the big eraser that gets rid of all the pain and anguish of the last 9 months. I can't find it. But it feels like it might be somewhere nearby.
I finished radiation today and as promised, I left that place with the biggest grin on my face instead of the tears and nerves my doctor expected. You cannot measure the relief I feel, the incredible sense of wow! that I have finished all the stinking, awful treatment that was listed on my "Get Rid of Sharon's Cancer" checklist.
I've still got Tamoxifen to take but hell, I can pop a pill. I get to be Doc visit free except for a skin checkup on Thursday. I'm healing like nobody's business here. Nice smooth skin under the blistering. I've even graduated back to Aquaphor in some spots. I was absolutely bound and determined to finish this before Easter and I have. I made it by 2 days.
I don't have any plans to recover lickity split. That's not gonna happen. I'm still exhausted, still have residual chemo pain in my hips and back. I have itty bitty eyelashes and my eyebrows are choppy but there. My tongue still feels funky and my taste buds aren't back. My brain is still like swiss cheese. And my head still gets away from the rest of me with grand plans for keeping busy and getting things done.
I'm SO ready to move away from this.
I got my daffodils from Vickie's yard today with help from Poppa and Jackie. Thanks Vickie!! My celebration daffodils :)
Thursday, April 9, 2009
Wednesday, April 8, 2009
Especially because I googled the procedure and up comes a result of a study done to determine whether children react adversely to the test without sedation. Guess what? They do.
There is a pediatric oncology dept at Children's Hospital at DC. Our own pediatricians are part of the Children's network. The hitch is the woman in the radiology dept at Shady Grove Hospital. They won't do it - despite Stef's own doctor and our insurance agreeing to it.
We NEED to find out what is going on because if this blossums into a kidney infection, and I think it has a few times, that's scaring on the kidney. At her tender age, more recurrences could result in damage. The other thing is the constant use of antibiotics - she's been on the things since November.
I'm ready to take the alternative medicine route. Ramp up the vitamin C, pump even more water through her (she's above 80 ounces a day) and who knows what else. Maybe I'll have her chew on tree branches or something.
However, she did color the inside of her paper ears pink with much coaxing. Then we put her ears together and took a picture for Daddy. Off she went, Easter bucket in hand, to school. This is a good day for her. Her buddy Lauren is there - they share part time status at preschool and rarely get to see each other.
Peace and serenity - Ahhhhh! Steffie last day of school before break is today so I expect Mount Vesuvius to erupt sometime this week. Got Chrissy here but she's chilling watching a movie. She's part of Vesuvius but she'll erupt when we get Steffie from school today. 3 rads to go!!
Stef needs to go for a fluoroscopy to shoot dye up into her bladder to check for reflux. The problem is that this procedure isn't normally done under sedation. After hopping through every hoop this morning, I finally got everyone's agreement (pediatrician, rad dept, and insurance) to get on board with my strong feeling that she needs to be sedated for this procedure. No child, especially one at her age, should go through the pain of being catheterized or the embarrassment of being awake during the procedure.
The tricky part will be scheduling this between her birthday (Tues) and practice (Thurs) and her birthday party and first softball game (Sat). I'm guessing she'll just need to flush her system really well and will be feeling perky the next day. She's on another antibiotic because the infection is back. Tracking down the cause involves one test after another.
A dear family friend has resolved my Daffodil issue. Vickie read my blog and tells me she has tons of daffodils in her gardens that I can come cut at will :) I'll be visiting her soon to pillage the daffodil supply. Hugs to you, Vickie, if you see this. And prayers for your Mom.
We've covered the bunnies. Let's move to snakes and birds.
Mom and Dad have, without a doubt, a sign over the front door that says "Enter all ye animals that have no other place to go." This includes wildlife. They've has opossum, birds, snakes, chipmunks, turtles, bunnies and squirrels in the house at various times of the years. This makes for much excitement, especially when the critter is alive. They've also got 3 dogs, 6 cats, 2 parakeets, and two fish ponds. It's a zoo.
So just this week, we've had one cat bringing in a live snake. And two live birds in the house. Of course, my uncle gets the snake in his rooms in the basement of the house because the cats come in and out his bedroom window. Dad's downtown, Mom is at the Sharon Spa (with me) and frantic phone calls from my uncle result in Dad calling Ethan, the kid who does odd jobs around the house. Ethan comes to rescue the snake and put him far away in the woods. This snake, I'm sure, is traumatized more from the hysteria than the cat.
The birds are a little easier because one just opens a window and prays the bird uses its bird brain to figure it all out. Dad and I were trying to figure out just how the birds got into the house. Assuming the cats, it appears that the birds were in there for awhile because Pop said there was birdy droppings under his desk.
Just like wild kingdom!
Update: Steffie won't be having the fluoroscopy. The rad dept Doc says she cannot put her asleep for it so it won't be happening. Not my kid, not on my watch. They'll have to address the whole thing another way. I'm pretty annoyed...no make that mad.
Tuesday, April 7, 2009
Amazing. I know some of it is the pain patches and Tylenol. Maybe some of it is the ever present "sleep the worry away" mentality that seems to be a normal part of being a cancer patient. Maybe I'm prepping for my busy day tomorrow. Jackie to school, trip to Target for EB stuff, Stef from school, Stef to Doc visit (another bladder infection), pet scrips, get Jackie, home, da da da and a whole lot of stuff in between, I'm sure. Anyway, I'm a sleepy head.
I'm folding clothes since I was supposed to be doing that earlier. I'd empty the dishwasher too but Bill is asleep and I don't want to wake him banging dishes around. Having a Clementine and glass of water before I take more Tylenol. I never EVER thought I'd see the day that Tylenol would nauseate me on an empty stomach or even work at all, for that matter. This stuff works like a charm now.
Down to one patch since the other fell off in the shower. I think I'll try for one for now. Fentanyl really dries out my mouth. It's not really recovered from chemo yet - weak taste buds and mouth dryness are no way to go happily through life.
My skin is healing really well. Bill's burn treatment made all the difference this weekend.
4 to go and I'm DONE!!! Watch the stinking machine break this week. Murphy's Law. I will not be at all surprised.
Going to sleep, again. Be well friends!
Monday, April 6, 2009
What we have here, world, is a lack of communication!!
So here goes, borrowed from a blog called Pink Prozac. Please forgive the profanity but I wanted to post it in it's entirety since it's someone's work, not my own. Italicized words are the author's comments - not my own.
"the past is in the past and the future is unknown. you can only live in the present and that's why its a gift"
"you could step off the curb tomorrow and get hit by a bus" (not a good analogy, its like i'm standing blindfolded in the middle of the fucking freeway with 100 of them coming at me) or (its like i already got hit by the bus and now its backing up over me)
"you gotta think positively" (ok, i'm positive i had cancer, and i'm positive that it wasn't fun)
"my (fill in blank here) had (fill in type here) cancer and that was (fill in number) years ago. you'll be fine"
"your lucky you didn't lose weight on chemo. (fuck you!)
"so, your fine now right?"
"so things are back to normal now right?"
"my grandmom died of that" (oh really, well fuck you!) or (gee, is it hereditary?)
"they burned my so and so's heart and lungs when he had radiation"
"God gives you what you can handle"
"what's your prognosis?"
"can i see what's going on under that hat"
"if anyone can beat it, its you" (no shit!)
"at least you got a good kind of cancer"
"if its not your time, its not your time" (then why bother with surgery and treatment? duh!)
"life is not fair" (thanks for the heads up, asshole)
"every cloud has a silver lining"
"its just a bump in the road" (living with a cancer diagnoses, losing your hair, getting poison injected in your veins, having breast surgery, getting radiation, having old lady bones, being cautious for lymphodema, gaining weight, not sleeping well, having hot flashes, being depressed and anxious..is not just a bump - its a major fucking mountain)
"you gotta be like lance"
"lance beat cancer"
"just look at lance"
"wow, that went by fast, didn't it"? (um, yeah, two surgeries, chemo, radiation; 6 months have never flown by sooo quickly for me)
"i had a friend with cancer but i think her chemo was more intense than yours" (maybe i just didn't whine as much)
"just think, your done"! (done? I'm done?..i guess i'm done with cancer everyone. nothing left to do. How about hormonal therapy, all the side effects, more boob surgery and worrying for the rest of my life about recurrence..fucking done my ass!)
"you look good bald" (WTF?)
"so was it (the cancer) bad?" (oh no, i had the good kind)
"did they catch it early?"
"wow, your head is really big"
"well, is it working"..(how am i supposed to know, its going to be a fucking wait and see for the rest of my life, thank you very much)
"this is a treatable disease"
"you will be able to recover from this"
"you have a nice shaped head" (thanks)
"how do you know if its working" ( i die, if it didn't work)
"you know you can eat more curry, its supposed to kill cancer cells" (great tip)
"you'll be fine, you have a great attitude" (if attitude really matters then why did i get cancer in the first place? or does attitude only matter after you get cancer? right now my attitude about cancer is lousy. what does that mean?)
"if you really want to live, you will. just never give up. when people give up, they die" (if i were hit and killed by that bus would they think i died because i gave up?)
"i'll be thinking about you getting chemo while i'm laying on the beach", "have fun while i'm gone" ( i don't know what she was smoking, but i want some of that)
"well, just remember, its only temporary" or "don't worry, it will grow back" (doesn't help asshole)*********************
If I ever thought the world wasn't going to hell in a handbasket, I just needed to read this list. God's truth, I look at the kids of today and watch them losing basic communication skills due to their inability to communicate in anything other than IM and text message abbreviations. Can you imagine what a list of this sort will look like 20 years from now?
Sunday, April 5, 2009
Dad and my brother chopping up a good-sized tree limb that came down in the high wind Friday night. Gusts were about 30 mph, bringing down alot of branches. We've got some picking up to do in the yard - we'll see how I feel later.
Bill just informed me of the 162 National's baseball games that will begin tomorrow. I can see that honey do list getting longer by the minute (*wink *wink)
Have batting practice today. The girls are hitting SO well. We ran them through base running exercises yesterday. I'm thinking these "midgets" will do rather well although the guys aren't convinced completely. We need some serious game simulations and these little ladies need to stop running like chicks. Steffie pulled a quad muscle - she's the leanest and fastest. Poured it on too thick without warming up enough. Hopefully, this complaint will iron itself out in the next few days.
I have pansies to plant - gotta do that too today. I love flowers - lots of them! Jackie's seedlings are starting to sprout in Poppa's garden house. We watered and sprayed them yesterday. The petunias and Sweet Williams are doing very well.
My burns are still pulling but I have to say, the great care Aunt Chelle Chelle and Bill gave me at Mom's yesterday made quite a difference. Bill spend alot of time applying cold compresses to the sites to loosen the dried skin. I love my nurse at the rad place but the saline solution she uses to clean the burns makes me want to scream. Bill is the best nurse, besides being so handsome and all :) Chelle just kept my mind occupied with talk and holding my hand. She's cute too :) Good peeps around me.
Oh yea - gotta do the EB (Easter Bunny) stuff this week. I am, without a doubt and quite shamelessly able to say, that I put together the BEST Easter baskets known to mankind. I should do it for a living, I'm that good. My husband comes in a close second as the best egg hider, driving Steffie nuts because she never finds them all until months later. This is particularly funny when one considers we hide her eggs in the same room every year.
Jackie is mad at the Easter Bunny because she has to wait a whole week to hunt for her eggs. Jackie has alot of opinions for someone so small.
Steffie is out of school starting this Thursday for Spring Break. She'll return the week of the 20th. I also have Chrissy helping this week as I'll be keeping her occupied while her Mom is at work. Jackie loves Chrissy (who will be 13 very soon). Bill's nickname for Chrissy is Air Force One and Stef is Air Force Two. The more sensible friend, Erica, is nicknamed Ground Control because she provides a measure of common sense to the chaos. They, of course, think this is hilariously funny.
I am so praying I'll be more comfortable soon so I can enjoy springtime with my little ladies. The cherry trees are blooming and we're so lucky to have two trees in our front yard. Absolutely gorgeous with all the blooms.
Mom's got a PET scan tomorrow with results coming in as fast as possible. She'll go two chemo sessions past her very best PET and then get a break. The "nurse cat" is still annoying her and in fact, tried to help with my burn treatment session yesterday. She didn't sit on me, just walked across me :) Helpful kitties, right? Mom was exhausted yesterday. Visits and worry. So Mom, if you're reading this - GO TAKE A NAP!!!!!
Hugs to all of you!
Saturday, April 4, 2009
I did help with practice this morning and it felt good to use my arm. Not too much though - just underhand throws and gentle grounders. What hurts right now is the incredible pulling from the dried skin. I'm gonna have Bill and Dad do some basic burn treatment on it today and see if we can't loosen things up a little.
The healing patches look great with healthy pink skin showing through. That's a relief. Dumb, but true - I am worried it won't ever heal and I'll always look like I got in a fight with a bottle of muriatic acid.
Gotta run cause we've got family hooking up over at Mom's house. Mom is tired but OK. The cat is being an overly attentive caregiver and won't let her sleep too much. Isn't it funny how our animals gravitate to us when we aren't feeling well? Marble thinks she's Mom's nurse. The only problem is she likes to sit on her patients :)
Have a good weekend!
Thursday, April 2, 2009
The picture doesn't do it justice - think hot magenta.
He was barely tolerating me trying to take his pic when he wanted to be fed. He looks annoyed, doesn't he?
And Clyde, high maintenance cat of the year who also deserves an award for most patient cat of the year. I think he actually likes to be in Jackie's baby stroller. When we unclip him, he doesn't move out :)
Alright. Don't scroll down lower if you don't want to see the burns.
By the way, I am now allowed to combine my patches with oxycodone to control the pain. Dr. A seems to think this intense pain will lessen and that I'm seeing the worst of it right now. Everyone expects it to ease by the end of the weekend. Me? I'm being a pessimist about the whole thing.
Murphy's Law, right? Sorry for the small type but my blog width is limited. Use the zoom on your browser if you want to see the text.
Grossed out yet?
I explained that this was a different kind of medicine and it was almost done. And also that it limited how much Mommy could move around. When she was walking out the door, I could see she didn't want to leave for school. I reassured her I would be fine. Bill also noticed her tears and promised her he would be with me all day to take care of me. That calmed her down. Being 4 is tough. Being 4 with a sick Mommy is even tougher. She has handled all this (with abbreviated explanations) like a heavy weight prize fighter. As has Steffie.
Stef is off in her own little world, continuing to bang against walls instead of doing what she's obligated to do. She's got a great gift - the gift of ignoring everything. If I am down and out for a nap, it's free time, according to her. This child of mine is a free spirit...she always has been. Gentle and sweet but she takes full advantage of Mommy.
I've been keeping up with the Mommy duties around the house pretty much. I can't vacuum and boy, does the house need it. My family consists of human crumb factories that sprinkle bits and pieces of everything all over the house. Add 3 cats and I vacuum 3-4 times a week. It's therapeutic.
My Uncle Frank and Aunt Regina are coming into town to stay with Mom and Dad until Monday morning. Mom is recovering nicely from chemo, so much so that she requested a road trip to the grocery with Dad today. Dad, of course, cannot stand Mom going to the grocery (read: she buys stuff!) but Mom always finds the coolest stuff when she visits the grocery. She's the only person I know who can actually visit the grocery and come home with NOTHING perishable :) Love my aunt and uncle - they are low maintenance, just chilled out people who will step in to help both Mom and me if we need it.
It's raining and mushy outside so I'm thinking the little fashion diva's softball practice might be canceled. We have added pink softball cleats to her softball fashion options. I think I'm going to make her wear my t-shirt that looks like this:
It's the skin, it's the implant and everything in between. The pain patches aren't working and the only thing that gives me a few moments of relief is the Tylenol. I'm pulling my patches tomorrow and going back on Oxycodone until it's under control. And anyone who doesn't agree with me--just let me hold a blow torch to your skin for 25 days and see how you get in lock step with me right quick.
It's too much to ask one person, or any person for that matter, to suffer like this to the point of almost vomiting from the pain. I know it will be better within the next 2 weeks but I can't do it right now. I hurt from my rib cage up to my neck, from my sternum all the way around to my right shoulder blade - yes, that's shoulder blade. And everything in between, including the crispy part under my arm, at my collarbone, below my right boob and down the left side. Raw exposed skin.
Maybe I'll post a picture tomorrow.
Wednesday, April 1, 2009
She receives two drugs called Olympta and Sysplatin by mediport every 3 weeks. As some of you might remember, she received a fabulous PET scan a few weeks ago with all mets gone except for one area in the right lung (down to 1 cm with SUV (cell activity) in low single digits). So she's cooking on chemo again to blast the mets to smithereens. She likens chemo to a pac-man chomping on the bad cells. Crazy Mom.
The plan is to do another PET on her next Monday, then take the results and pound her 2 more times past the best PET result. Then she'll have a lowered dose of another kind of chemo that can be delivered in 30 minutes. That's a definite step up from the 6-7 hours she spends at chemo now due to required meds such as Lasix needing to be administered individually.
Mom's doing fabulous here. Her appetitie is up and she's actually requesting yummy foods - mac and cheese shells, strawberries, mayo and egg sandwich (yuck!) and welch fruit treats. Of course, don't forget the ever present Clementine oranges. I finally convinced her that using Miralax twice a day is much better than Sennecot with it's associated cramps. She drinks her water when I hand her the cup too! We've got a great program running here. She stays over at my house for a peaceful day right after chemo. This week, she's with me for a second day because Dad is downtown for the morning. Mom's house, with 3 dogs, my dad, 2 birds, 6 cats, and my uncle is not conducive to rest. AT ALL!
So since I know she's going to read this :) I need to give her some props. Mom is being an excellent patient and Jackie is loving her being here. Jack has behaved this morning, being quiet while Mom napped so she's being a helper girl.
The chicks rule right now :)