Well, all my scans came back squeaky clean! I'm officially one whole year and 5 days NED(no evidence of disease--since you're never really and truly cured) and I could not be happier. Getting through this year has been difficult and I have had so much help from friends, family, church and lovely strangers, but this one, this one post I want to dedicate to my very special molemates.
I'll start with my melanoma mentor Tina Parker. She is such an AMAZING woman. She's a stage III. She is a single mom who did one month of high dose Interferon WHILE WORKING!!! I can't even imagine. She is constantly raising awareness and has even gone and talked to high school kids about the dangers of tanning. She is the kindest, friendliest, most generous, honest, tell it like it is warrior ever! She did her treatment a few months before I did and held my hand through mine every step of the way. When we first "met" on fb, she immediately messaged me her cell number and insisted I call her any time day or night. And boy did I. I would call or text and cry, complain and moan and she encouraged me at every turn. Just the sound of her sweet little Missouri accent would calm me down:) She gave me my mantra "it's working! It's working!" when I would be in tears over side effects. She has prayed for me and with me all year long. Even though we have never and may never meet in person, I consider her a lifelong friend who will be there for me always. I am incredibly grateful for her strength and faith. And there's always Vegas baby:)
Next is the beautiful little spitfire Chelsea Price. Chelsea is a 24 year old warrior who is also stage III. She is currently doing her second round of an IPI trial. In her trial she doesn't know if she's actually receiving the drug or not. That's right. She is selflessly helping researchers learn more about this drug in order to help future melanoma patients. Chelsea came into my life a short while into my own treatment. I was instantly drawn to her (I imagine most people are). I remember thinking to myself that I wanted to do for her what Tina had done for me. I was going to be her mentor and walk her through this whole new life with melanoma thing. But low and behold, this gal wasn't going to walk through, she was going to run full tilt with fists held high. She has become the new poster child for melanoma. She's raising money and awareness at every turn. She has inspired me, comforted me and I am in awe of her. You should check her out at www.myadventureswithmelanoma.blogspot.com.
And last, but not least is the wonderful and beautiful Erin Youngerberg. Erin befriended me on the AIM at melanoma fb page. She was stage III when I first "met" her. We were supposed to start Interferon treatment at the same time, but due to job changes, her hectic schedule and some reservations, she kept postponing. Then she had a scan that showed Melanoma on her lungs. We were devastated. Not our Erin. I remember I called Tina in tears. It all hit too close too home. But don't you worry about Erin. She healed herself:) Yup, at her last scan there was NO trace of the tumors!!! She's our little miracle molemate:) She is a jet setting, New Yorker and seriously fabulous photographer. She is always there with a kind, encouraging word for everyone. I am so extremely jealous that her and Chelsea do treatment at the same hospital and meet up every now and again and brag about it on fb:)
I consider these ladies to be my molemates. They are the gals who understand exactly what it feels like to face the c word. They get it when you're down, when you're up, when you're sick, when you're well and when you've completely lost your mind in all this madness. I am forever indebted to you ladies. Thank you for getting me through this year and thank you to all my other melanoma warriors. One year NED down and God willing, many many many more for all of us!!
Sunday, November 6, 2011
Monday, October 31, 2011
One year ago...
One year ago today I was a nervous wreck. I knew that my cancer had spread to at least one lymph node. I knew they were going to cut open my pit. I knew I would have a jp drain (completely disgusting by the by). I knew I was staring down the barrel of a year long cancer treatment that my doctor described as "horrible, just horrible." I had researched and researched and researched until my eyeballs burned and then I researched some more. I was a complete mess.
But, here I am. I made it thru all those things that seemed so scary and impossible to fathom. I found amazing new friends, my kids are not irreversibly damaged, my marriage (though put thru the wringer) is still intact and stronger than ever and I feel great for the first time in a year.
Now I'm here facing scan week. If my scans are clear, it's gonna be a party. One whole year NED (no evidence of disease)! If not, well, I try so hard not to let my mind go there, but I know, just like my other molemates know, exactly what that means. More treatment, more surgery, more sucksville, and horror of horrors, maybe just no more...
Please pray for a clear scan week. I have two other dear friends having scans this week too, so we're praying for a hat trick:)
But, here I am. I made it thru all those things that seemed so scary and impossible to fathom. I found amazing new friends, my kids are not irreversibly damaged, my marriage (though put thru the wringer) is still intact and stronger than ever and I feel great for the first time in a year.
Now I'm here facing scan week. If my scans are clear, it's gonna be a party. One whole year NED (no evidence of disease)! If not, well, I try so hard not to let my mind go there, but I know, just like my other molemates know, exactly what that means. More treatment, more surgery, more sucksville, and horror of horrors, maybe just no more...
Please pray for a clear scan week. I have two other dear friends having scans this week too, so we're praying for a hat trick:)
Tuesday, October 25, 2011
Coming out of the chemo coma
Ok, so this blog hasn't really gone as well as I'd hoped. I have really wanted to blog, but was having some issues with SEVERE dry eye on the treatment. I'm going to try and play catch up.
I went to see Dr. G on October 3rd for my monthly visit and blood work. He surprised me by telling me that I could not continue treatment anymore due to high liver enzymes. A normal person's runs around 30-70. All during treatment (even high dose) mine was around 80-90--elevated but not alarming. A few months ago it start going up--around 140. The last visit it had jumped to over 600. What does it all mean you might ask. It could be several things. My doctor thinks it is probably the treatment (which is why he stopped it). However...it could be that the cancer has spread to my liver or a number of other things. I go in for a PET scan and more blood work on Nov. 3. I will get the results the next morning (love my doc and fast results).
I've been off of the treatment for 3 weeks. The other two times I had to take a break, I got serious headaches and this time was no different. I had the stomach flu twice during that time. But now, I feel REALLY good!!!! I didn't realize how bad I felt until I felt better. It turns out that I don't actually hate my family:) No headaches, no dry eyes, no body aches, no freezy chills, and I'm getting my taste buds back too!! The first day that food actually tasted good I waaaay over did it and my stomach and esophagus were not happy campers, but it was totally worth that sleeve of oreos:) I still have a bit of brain fog, which is really frustrating for poor Eddie. He really hates the phrase, "what's that word?" :)
Now that the Intron blinders are off, I'm seeing what a disaster my house is, so I've been playing some major catch up. Thank you sweet sister Katie for forcing me to face my laundry dilemma. I was in total denial. Sigh...
Emotionally, I'm just trying to enjoy feeling better and not think about my upcoming scans and labs.
That's all for now. Wear your sunscreen and stay out of those nasty tanning beds:)
I went to see Dr. G on October 3rd for my monthly visit and blood work. He surprised me by telling me that I could not continue treatment anymore due to high liver enzymes. A normal person's runs around 30-70. All during treatment (even high dose) mine was around 80-90--elevated but not alarming. A few months ago it start going up--around 140. The last visit it had jumped to over 600. What does it all mean you might ask. It could be several things. My doctor thinks it is probably the treatment (which is why he stopped it). However...it could be that the cancer has spread to my liver or a number of other things. I go in for a PET scan and more blood work on Nov. 3. I will get the results the next morning (love my doc and fast results).
I've been off of the treatment for 3 weeks. The other two times I had to take a break, I got serious headaches and this time was no different. I had the stomach flu twice during that time. But now, I feel REALLY good!!!! I didn't realize how bad I felt until I felt better. It turns out that I don't actually hate my family:) No headaches, no dry eyes, no body aches, no freezy chills, and I'm getting my taste buds back too!! The first day that food actually tasted good I waaaay over did it and my stomach and esophagus were not happy campers, but it was totally worth that sleeve of oreos:) I still have a bit of brain fog, which is really frustrating for poor Eddie. He really hates the phrase, "what's that word?" :)
Now that the Intron blinders are off, I'm seeing what a disaster my house is, so I've been playing some major catch up. Thank you sweet sister Katie for forcing me to face my laundry dilemma. I was in total denial. Sigh...
Emotionally, I'm just trying to enjoy feeling better and not think about my upcoming scans and labs.
That's all for now. Wear your sunscreen and stay out of those nasty tanning beds:)
Saturday, August 13, 2011
Beating the Heat BK Style
What do you do when your sweet hubs has had the kids ALL weekend and it's too hot to be outside? You go to the Burger King play area.
I love my sweet, sweet husband so much, but his idea of watching the kids this morning was to feed them chips and honeybuns for breakfast and turning on hours upon hours of SpongeBob. Don't get me wrong, I am not be ungrateful. And he does LOTS of wonderful things with our kids. He makes record breaking paper airplanes, shows them cool games, takes them all over town. For instance, one Saturday, he took them to every Walgreens in the Edmond/OKC area to get free GoGo figurines. He truly is the most fun, AMAZING dad ever!! With that said:
Today, he was tired, but my treatment tired trumped that as per usual. So, who can blame a guy for taking the easy way out every once in a while? Not me. When I finally got up from my second nap, the kids had gone CRAZY! I sent Eddie into our room for a rest, loaded up the kids and had NO idea where we would end up.
There was fighting, screaming, poking, mocking, and general unruliness in abundance. That's when I remembered the BK indoor playplace. Oh, thank you Lord for allowing me to think of this place. We spent a glorious hour and a half there. My children played so nicely while I sat with my eyes half closed sipping a coke and nibbling fries.
Harry fell asleep in the car and has been out ever since. The girls followed quickly behind him. Eddie is pulling a much needed sleep through (you know, when you lay down for a nap, but end up sleeping through until morning).
So thank you BK for being there for me in my time of need. I will be back to finish my, I mean the kid's collection of paper jams toys!
I love my sweet, sweet husband so much, but his idea of watching the kids this morning was to feed them chips and honeybuns for breakfast and turning on hours upon hours of SpongeBob. Don't get me wrong, I am not be ungrateful. And he does LOTS of wonderful things with our kids. He makes record breaking paper airplanes, shows them cool games, takes them all over town. For instance, one Saturday, he took them to every Walgreens in the Edmond/OKC area to get free GoGo figurines. He truly is the most fun, AMAZING dad ever!! With that said:
Today, he was tired, but my treatment tired trumped that as per usual. So, who can blame a guy for taking the easy way out every once in a while? Not me. When I finally got up from my second nap, the kids had gone CRAZY! I sent Eddie into our room for a rest, loaded up the kids and had NO idea where we would end up.
There was fighting, screaming, poking, mocking, and general unruliness in abundance. That's when I remembered the BK indoor playplace. Oh, thank you Lord for allowing me to think of this place. We spent a glorious hour and a half there. My children played so nicely while I sat with my eyes half closed sipping a coke and nibbling fries.
Harry fell asleep in the car and has been out ever since. The girls followed quickly behind him. Eddie is pulling a much needed sleep through (you know, when you lay down for a nap, but end up sleeping through until morning).
So thank you BK for being there for me in my time of need. I will be back to finish my, I mean the kid's collection of paper jams toys!
Wednesday, August 10, 2011
Doctor Appointment and Wind Damage
I went to see my oncologist on Tues. He did the ol in and out. Things look good yadda yadda. Then, as I was checking out, he came up to me to tell me that my blood work came in and my liver counts were too high. He said to continue treatment, but I have to go back on Tues to have more blood work. He suspects that my body is just reacting to having a week off. I did have a rather terrible night on Mon. It was like high dose side effects, so maybe that was it. Oh yeah, and I got a quit date! Nov 18th will be my last injection!!! I'm counting it down!!
Last night we got a really bad thunderstorm. I woke up at around 12:30 to a thunder, lightening and a really loud crashing sound. We jumped out of bed and ran into the living room. The power was out, but when the lightening flashed, we could see that a tree had hit our house! Eddie had me gather all the kids into the hallway and he called his folks to see if there was a tornado. The news said it was a severe t-storm with high winds. If that was only high winds, I don't ever ever want to be hit with an actual tornado. It was so loud and crazy. I was so proud of my kids. They just sat in the hallway and played Leapster until the storm passed then toddled off to bed and went right back to sleep.
This morning we got up to check out the damage. We lost 4 big trees and our fence is trashed. Luckily, there was no damage to the house or cars though. Trees were down all over the neighborhood. I know it sounds weird, but I am really heartsick over those trees. They provided so much shade in our backyard.
Anyway, I know this post would be 200x better with pictures, but I am a complete computer illiterate, so maybe I'll talk E into helping me later.
Last night we got a really bad thunderstorm. I woke up at around 12:30 to a thunder, lightening and a really loud crashing sound. We jumped out of bed and ran into the living room. The power was out, but when the lightening flashed, we could see that a tree had hit our house! Eddie had me gather all the kids into the hallway and he called his folks to see if there was a tornado. The news said it was a severe t-storm with high winds. If that was only high winds, I don't ever ever want to be hit with an actual tornado. It was so loud and crazy. I was so proud of my kids. They just sat in the hallway and played Leapster until the storm passed then toddled off to bed and went right back to sleep.
This morning we got up to check out the damage. We lost 4 big trees and our fence is trashed. Luckily, there was no damage to the house or cars though. Trees were down all over the neighborhood. I know it sounds weird, but I am really heartsick over those trees. They provided so much shade in our backyard.
Anyway, I know this post would be 200x better with pictures, but I am a complete computer illiterate, so maybe I'll talk E into helping me later.
Thursday, August 4, 2011
It's my (pity) party and I'll cry if I want to.
This post will probably be really rambly and confusing, but I just had some thoughts and needed to get them out.
Lately, I have been feeling really disconnected. I'm not doing this whole cancer thing very well right now. I'm not the smiley, brave, "gonna kick some cancer a**" gal right now. It's too hard. I'm lonely, tired, and self loathing. I don't want to function. I want to curl up in a hole and give up. I'm tired of smiling and saying that I'm doing well. I'm tired of being a sub par wife and mother. I hate that my children want their Grandma, Aunt, Daddy, Mimi more than me. On a good day, I have a little bit to give and on a bad day it's all I can do to get up.
I'm aware that this darkness I feel is another on a long list of side effects. I know it will pass and one day I will be myself again. It doesn't really matter though because the feelings are there and they are real.
I look in the mirror and I'm shocked at myself. Scraggledy thinning hair, dark circles, bloodshot eyes, bruises, knobby knees, scars and now a stupid uno brow of zits.
I spend an extraordinary amount of time trying to figure out what I can eat that will not send my stomach into fits and even more time being wrong. Have you ever tried to parent from the toilet?! Not effective.
Truly the only thing holding me together right now are my Tues/Thurs days where my kids are gone and my AMAZING sister comes over with food and laughs every time I yell from the bathroom "It sounds like pee, but it's poop." She lets me talk incessantly about cancer. She babies me and knows that I will most likely nod off at any moment.
I'll let you know when I'm over this "mood", but for now I'm just going to wallow and wallow and wallow in my little cocoon of of doom and gloom. This is real folks. Sometimes life just royally sucks and in my mind, I'm the Queen of Sucksville. Hopefully, there will be a coup in my future.
Lately, I have been feeling really disconnected. I'm not doing this whole cancer thing very well right now. I'm not the smiley, brave, "gonna kick some cancer a**" gal right now. It's too hard. I'm lonely, tired, and self loathing. I don't want to function. I want to curl up in a hole and give up. I'm tired of smiling and saying that I'm doing well. I'm tired of being a sub par wife and mother. I hate that my children want their Grandma, Aunt, Daddy, Mimi more than me. On a good day, I have a little bit to give and on a bad day it's all I can do to get up.
I'm aware that this darkness I feel is another on a long list of side effects. I know it will pass and one day I will be myself again. It doesn't really matter though because the feelings are there and they are real.
I look in the mirror and I'm shocked at myself. Scraggledy thinning hair, dark circles, bloodshot eyes, bruises, knobby knees, scars and now a stupid uno brow of zits.
I spend an extraordinary amount of time trying to figure out what I can eat that will not send my stomach into fits and even more time being wrong. Have you ever tried to parent from the toilet?! Not effective.
Truly the only thing holding me together right now are my Tues/Thurs days where my kids are gone and my AMAZING sister comes over with food and laughs every time I yell from the bathroom "It sounds like pee, but it's poop." She lets me talk incessantly about cancer. She babies me and knows that I will most likely nod off at any moment.
I'll let you know when I'm over this "mood", but for now I'm just going to wallow and wallow and wallow in my little cocoon of of doom and gloom. This is real folks. Sometimes life just royally sucks and in my mind, I'm the Queen of Sucksville. Hopefully, there will be a coup in my future.
Thursday, July 21, 2011
The Haps
Here's what's going on with me: My dr had me take a week of treatment last week. It was OUTSTANDING! Aside from some headaches, I felt like a super star. My back didn't hurt, no tummy trouble, slept like a babe and ate the house down. I was still as weak as a sweet little baby kitten, but felt pretty good. Then came Monday.
The doctor called and said since my tummy issues were cleared up that it was most likely the Intron and that I should start back on injections. He said that it happens. If you're having problems, sometimes you have to stop for a week or so, then go back on. I must admit, I felt a little like a failure, but I'll get over it. I knew what to expect from the one time I skipped a dose so Eddie and I could go on a mini vacay. I manned up and did the shot and it was as horrible as I knew it would be. It was the usual symptoms times 10.
At some point in the night, E.J. came and got in bed with me (Eddie being banished to the couch and all). I woke up so so sick, so I woke her up and asked her to get Eddie for me. He came in and piled on all the blankets we had and brought me some Tylenol. Ellie said, "Mom, I know you must be so cold cause the whole bed is shaking." Me: Yeah, I'm freezing! Come snuggle my back cause you are so warm." Then that sweet little baby girl snuggled up to me and started rubbing my back O so sweetly. I drifted off a little and woke up to her holding my hand. What a doll!
Last night was bad, but not as bad as Monday. I'm ready to get back to the slightly annoyingly sick phase again. I expect Friday to be a little less worse than Wed and so on until I can semi function again.
That's all I have for now. Wear your sunscreen, stay out of tanning beds and if you're too dumb to do that, for heaven sakes, protect your kids.
The doctor called and said since my tummy issues were cleared up that it was most likely the Intron and that I should start back on injections. He said that it happens. If you're having problems, sometimes you have to stop for a week or so, then go back on. I must admit, I felt a little like a failure, but I'll get over it. I knew what to expect from the one time I skipped a dose so Eddie and I could go on a mini vacay. I manned up and did the shot and it was as horrible as I knew it would be. It was the usual symptoms times 10.
At some point in the night, E.J. came and got in bed with me (Eddie being banished to the couch and all). I woke up so so sick, so I woke her up and asked her to get Eddie for me. He came in and piled on all the blankets we had and brought me some Tylenol. Ellie said, "Mom, I know you must be so cold cause the whole bed is shaking." Me: Yeah, I'm freezing! Come snuggle my back cause you are so warm." Then that sweet little baby girl snuggled up to me and started rubbing my back O so sweetly. I drifted off a little and woke up to her holding my hand. What a doll!
Last night was bad, but not as bad as Monday. I'm ready to get back to the slightly annoyingly sick phase again. I expect Friday to be a little less worse than Wed and so on until I can semi function again.
That's all I have for now. Wear your sunscreen, stay out of tanning beds and if you're too dumb to do that, for heaven sakes, protect your kids.
Saturday, July 16, 2011
Results are good
Dr called and said everything was pretty normal. Polyp on gall bladder but they aren't concerned.
Tuesday, July 12, 2011
Update
Had a dr apt today. My white blood count is really low so he wants me to stop treatment for possibly a week. I have mixed feelings. Part of me thinks yea a week off. The other part knows that going back on is going to be oh so awful. When you take a break, it's like starting all over with the side effects so there will be high fever, body aches, and chills galore.
*Poop talk ahead*
So, I've had severe diarrhea, stomach cramps and back pain for about 2 weeks. My glucose was really low because I just can't eat anything without a disaster happening. The dr gave me some meds to see if it will help, but he suspects something is wrong with my gall bladder and/or pancreas. I'm going in for an ultrasound tomorrow at 1045. Then, possibly have to go see a gastroentologist (?). The good news is that my dr doesn't think that it is related to cancer, so yea!
I also had a spot on my ovary light up on the PET, but again my dr said it probably wasn't cancer related. They are going to send my scans to my OBGYN just to see what she thinks.
So that's where we're at. No joke, I have to go to the bathroom STAT! :)
*Poop talk ahead*
So, I've had severe diarrhea, stomach cramps and back pain for about 2 weeks. My glucose was really low because I just can't eat anything without a disaster happening. The dr gave me some meds to see if it will help, but he suspects something is wrong with my gall bladder and/or pancreas. I'm going in for an ultrasound tomorrow at 1045. Then, possibly have to go see a gastroentologist (?). The good news is that my dr doesn't think that it is related to cancer, so yea!
I also had a spot on my ovary light up on the PET, but again my dr said it probably wasn't cancer related. They are going to send my scans to my OBGYN just to see what she thinks.
So that's where we're at. No joke, I have to go to the bathroom STAT! :)
Sunday, July 10, 2011
Day with L
The girls just got back from a 10 day vacation and I was so happy to have them back. L and I actually got to spend some one on one time together this afternoon. Everyone else was taking a nap (highly unusual). We did some bonding time: took a shower, she showed off her new found ability to do a headstand. I had the usual stomach ache issues and got to hear heartwarming/hilarious things such as "It's ok that it smells momma because you always sit with me when I poop." We laid on the floor in her room while she told me all about her trip to Wyoming. I just kept looking at her in awe. She is growing up so much and as she talked, I just tried to burn the image of her in my mind. Her sweet face, her glowing blonde hair, her perfectly white straight baby teeth. If you have kids, I think you know the feeling of wanting to just lean over and smother their sweet cheeks with kisses. Perfection.
Here's the weird thing: All day the girl just kept offering me food. Fruit snacks? Crackers? Bananas? It was getting annoying. At one point, she brought me a bowl of tortilla chips and I said, "L, we aren't having any chips right now ok?" Her face turned to worry and she said, "Mom, I won't eat any. They're just for you." I had mistakenly thought that she was offering the foods that she wanted to eat.
Then she said this: "I noticed that you didn't eat breakfast and only a few bites of lunch. What if you don't eat anything when we aren't here and you get really sick?"I suddenly realized what she was doing. I wanted to curl up in a ball and die. I wanted it all to go away. I wanted a different life for her. I fought back tears. A six year old should not worry about what their mom is eating. It's just not fair to her.
I wish I could say that I ate the chips, but I just couldn't. I did wrap in her in super hug and explained that my treatment made things taste funny. I took her to the kitchen and forced myself to eat a handful of Teddy Grahms. It seemed to appease her.
During this whole ordeal, I have tried to be appropriately honest with my kids about what is happening. My motto to L has always been that if there is something to worry about, I will tell her. We talk freely about cancer and treatment. They have seen me do injections. I just hope this is the right thing for them. I just don't know.
What I do know is that for now I am cancer free. I am fighting so hard thru each treatment and I can see the light at the end of the tunnel. November her I come and I am going to eat up Thanksgiving and Christmas and wipe the worry right of my sweet 6 year old face! Take that Melanoma!!!!
Here's the weird thing: All day the girl just kept offering me food. Fruit snacks? Crackers? Bananas? It was getting annoying. At one point, she brought me a bowl of tortilla chips and I said, "L, we aren't having any chips right now ok?" Her face turned to worry and she said, "Mom, I won't eat any. They're just for you." I had mistakenly thought that she was offering the foods that she wanted to eat.
Then she said this: "I noticed that you didn't eat breakfast and only a few bites of lunch. What if you don't eat anything when we aren't here and you get really sick?"I suddenly realized what she was doing. I wanted to curl up in a ball and die. I wanted it all to go away. I wanted a different life for her. I fought back tears. A six year old should not worry about what their mom is eating. It's just not fair to her.
I wish I could say that I ate the chips, but I just couldn't. I did wrap in her in super hug and explained that my treatment made things taste funny. I took her to the kitchen and forced myself to eat a handful of Teddy Grahms. It seemed to appease her.
During this whole ordeal, I have tried to be appropriately honest with my kids about what is happening. My motto to L has always been that if there is something to worry about, I will tell her. We talk freely about cancer and treatment. They have seen me do injections. I just hope this is the right thing for them. I just don't know.
What I do know is that for now I am cancer free. I am fighting so hard thru each treatment and I can see the light at the end of the tunnel. November her I come and I am going to eat up Thanksgiving and Christmas and wipe the worry right of my sweet 6 year old face! Take that Melanoma!!!!
Friday, July 8, 2011
Responsible blogging
So it's come to my attention that some people reading my blog were wondering about my scans. Scans were clean! No cancer! I have been sick for a few weeks and my joints are killing me so it makes typing painful. Sorry to leave people hanging. I ll try harder to be a more responsible blogger. Thanks to everyone for the prayers and concern.
Friday, June 17, 2011
Scanxiety
Today I had my PET scan. For me the actual scan is pretty relaxing. I was told to try and eat a low carb diet for 24 hrs before. I ate a lot of steak (thank you grill master Eddie). I wasn't allowed anything to eat after 7:15 this morning. I didn't wake up until 8:30, so I missed breakfast.
I was so weak and hungry by 1230 that when they handed me a sugery concoction of barium contrast, I was thankful. Mmmmm...fruit punchy. Then, I had an IV put in and some kind of radioactive dye injected into my arm.
Here comes the best part: They put you in a room, wrap you in warm blankets and hand you a remote to your very own tv for 45 min. Now, if you have small kids at home all day, you know what a treat it is to be able to watch something other than Nick Jr. I of course chose Maury. Well, wouldn't you know it, but the radiologist came to get me right before I was going to find out who the baby daddy was. Bummer. Oh, did I mention that if you tell them you don't like small spaces, they give you a little something warm and fuzzy and floating.
Then, you get to lay in a big tube that makes worley noises that are actually quit soothing. I fell asleep, so I'm pretty sure I got an A+ for holding still. After it was all said and done, the radiologist came in. She asked me if I had ever had trauma to my right chest area. Yeah, a port, but Ihad it removed in Feb. She said it looked like I had been punched in the boob (she actually said those words). Well, you know, that's pretty much how it feels--I am speculating here.
Here's the frustrating part: She told me that she had a dr come in to look at my boob punch, I mean removed port area. A DOCTOR WAS RIGHT THERE LOOKING AT MY PET, BUT I CAN'T GET MY RESULTS! He was right there. I did that thing where I was searching her face for some sign of "sorry it's worse" or "don't you worry old gal. You're just fine." Nothing.
So, I called my nurse and vaguely said I had a question. She called me back and I sheepishly asked if I could have my results today. No go. Looks like Monday it is. Hopefully, my next post will be a positive one. Until then, lets just keep on praying!
xxtgqyqlbw6sdzk6
I was so weak and hungry by 1230 that when they handed me a sugery concoction of barium contrast, I was thankful. Mmmmm...fruit punchy. Then, I had an IV put in and some kind of radioactive dye injected into my arm.
Here comes the best part: They put you in a room, wrap you in warm blankets and hand you a remote to your very own tv for 45 min. Now, if you have small kids at home all day, you know what a treat it is to be able to watch something other than Nick Jr. I of course chose Maury. Well, wouldn't you know it, but the radiologist came to get me right before I was going to find out who the baby daddy was. Bummer. Oh, did I mention that if you tell them you don't like small spaces, they give you a little something warm and fuzzy and floating.
Then, you get to lay in a big tube that makes worley noises that are actually quit soothing. I fell asleep, so I'm pretty sure I got an A+ for holding still. After it was all said and done, the radiologist came in. She asked me if I had ever had trauma to my right chest area. Yeah, a port, but Ihad it removed in Feb. She said it looked like I had been punched in the boob (she actually said those words). Well, you know, that's pretty much how it feels--I am speculating here.
Here's the frustrating part: She told me that she had a dr come in to look at my boob punch, I mean removed port area. A DOCTOR WAS RIGHT THERE LOOKING AT MY PET, BUT I CAN'T GET MY RESULTS! He was right there. I did that thing where I was searching her face for some sign of "sorry it's worse" or "don't you worry old gal. You're just fine." Nothing.
So, I called my nurse and vaguely said I had a question. She called me back and I sheepishly asked if I could have my results today. No go. Looks like Monday it is. Hopefully, my next post will be a positive one. Until then, lets just keep on praying!
xxtgqyqlbw6sdzk6
Wednesday, June 15, 2011
WOW!
Wow is right! That worship time was just incredible! When they announced before services about the girl who just graduated from high school with cancer who is doing hospice, my heart just sank. It made me think how lucky I am right now. I mean what if this had happened to me at that age? What would I have missed?
Please pray for this young girl and her family. Pray for miraculous healing and peace for her and her family.
- Going to college
- Working weird part time jobs
- Vacations with just my husband
- Hiking to the top of Mt. Washburn
- Voting
- Getting married
- Having sex (yeah, I said it)
- Having my beautiful babies (see above bulletin)
- Holding and rocking those babies
- Watching them grow and change
- Arkansas last summer
- All the times spent giggling with my mom and sisters
- Spending time with my Dad
- Trips with my in-laws
- and so much more
Please pray for this young girl and her family. Pray for miraculous healing and peace for her and her family.
Saturday, June 11, 2011
Better Than a Xanex
Confession: I have panic attacks. Yup, full on crazy panic attacks. If you've never had one, I'm jealous. If you have, you know it's the worst. I've had them occasionally for years, but apparently getting a stage III MM diagnosis exacerbates the condition. Go figure.
I started feeling a little nervous yesterday around 5, but tried to brush it off. At about 2 in the morning, I was in full blown melt down. I've been having a lot of pain in my ribs and lower back, so I did what any normal cancer patient does and started thinking the worst. I just wanted it to be morning so that I could call my doctor. So, I laid there thinking I was going to die and imaging how my doctor would break the news and how I would react. All the while my chest was caving in on itself.
So what do I finally decide to do? Wake up every member of my immediate family of course. I started with Eddie. He was sleeping on the couch (see A Deal's a Deal post). I toddled out fighting back tears and squeezed in next to him. I like to smell his skin. It makes me feel better. I woke him up and at this point, I'm in tears. He didn't even have to ask what's wrong. He knows. He held me and whispered that I'm going to be ok. I laid there for a while and while my head and heart wanted to stay right there, my body protested. So, I went back to bed. A few minutes later I'm not better, so I call my mom.
Why is it that I can be an adult and handle hard situations, but as soon as I hear my Mom's voice, it's like I turn into a 5 year old? She answered the phone and I could tell by her gravely voice that she had been in a deep sleep. "Mom." I managed to squeak out. She also knows. She talked to me and reassured me in a way that only Mommas can. I hung up the phone. Now, I needed a dose of my sisters.
I called Katie. She has an amazing gift of answering the phone like she's expecting you to tell her she's won the lottery even in the middle of the night. Hello!!!! She also knows, so she starts in on talking about anything but cancer. I got an incredible story of Ryan falling thru the ceiling. I was laughing so hard. It was a perfect cure, but I needed a little more love to feel better.
I called Nan. She does NOT have that gift that Katie has:) Sorry Katie, but we got to giggling so hard thinking about Ryan's legs dangling from the ceiling. I finally let her get back to bed and I was able to drift off to sleep.
Now, Xanex works great for anxiety, but nothing beats knowing you have a family that will take your calls at all hours of the night. My PET scan is scheduled for Friday, so keep your phones by your beds ladies:)
I started feeling a little nervous yesterday around 5, but tried to brush it off. At about 2 in the morning, I was in full blown melt down. I've been having a lot of pain in my ribs and lower back, so I did what any normal cancer patient does and started thinking the worst. I just wanted it to be morning so that I could call my doctor. So, I laid there thinking I was going to die and imaging how my doctor would break the news and how I would react. All the while my chest was caving in on itself.
So what do I finally decide to do? Wake up every member of my immediate family of course. I started with Eddie. He was sleeping on the couch (see A Deal's a Deal post). I toddled out fighting back tears and squeezed in next to him. I like to smell his skin. It makes me feel better. I woke him up and at this point, I'm in tears. He didn't even have to ask what's wrong. He knows. He held me and whispered that I'm going to be ok. I laid there for a while and while my head and heart wanted to stay right there, my body protested. So, I went back to bed. A few minutes later I'm not better, so I call my mom.
Why is it that I can be an adult and handle hard situations, but as soon as I hear my Mom's voice, it's like I turn into a 5 year old? She answered the phone and I could tell by her gravely voice that she had been in a deep sleep. "Mom." I managed to squeak out. She also knows. She talked to me and reassured me in a way that only Mommas can. I hung up the phone. Now, I needed a dose of my sisters.
I called Katie. She has an amazing gift of answering the phone like she's expecting you to tell her she's won the lottery even in the middle of the night. Hello!!!! She also knows, so she starts in on talking about anything but cancer. I got an incredible story of Ryan falling thru the ceiling. I was laughing so hard. It was a perfect cure, but I needed a little more love to feel better.
I called Nan. She does NOT have that gift that Katie has:) Sorry Katie, but we got to giggling so hard thinking about Ryan's legs dangling from the ceiling. I finally let her get back to bed and I was able to drift off to sleep.
Now, Xanex works great for anxiety, but nothing beats knowing you have a family that will take your calls at all hours of the night. My PET scan is scheduled for Friday, so keep your phones by your beds ladies:)
Wednesday, June 8, 2011
Gimme Gimme Gimme That Sweet Cancer Swag
I did not know about all the free stuff and special treatment that having cancer will get you. I don't know if there is some kind of cancer code that I'm breaking by revealing this, but it's true. I'm kind of scared to post this cause I'm pretty sure that Susan G. Komen will come kicking my door in trying to confiscate my treats and goodies. (Google her non cancer losers:)
Back to the loot. I've gotten meals, cards, letters, monetary dontations, slippers, jammies, blankets, foot creams, inspirational jewlery, chicken soup, candy, books, magazines, clothes, A LADY COMES TO CLEAN MY HOUSE!!!, stuff for my kids, my sister has visited me 3 times and my dad once, another sister comes over most Tuesdays and we sit and watch movies and she watches me sleep, my mom comes over to help me clean and again watch me sleep, my MIL watches my kids on Tuesdays and any other day I need her to, my sweet cousin and FIL mow the grass every Saturday (that may seem like something for Eddie's list of loot, but actually it's more for me. Eddie is impervious to the evil glances and passive aggressive comments about the yard. In their defense, they do not know about my cancer and cannot be expected to treat me accordingly with helpful offers, heart felt smiles or inspiring stories of someone they knew that had testicular cancer and lived).
That reminds me, I have gotten so used to people treating me in this manner, that now, it surprises me when they don't. Like how dare the lady at the check out counter glare at me when my children misbehave? I have some other examples, but for some reason, all of them involve my children misbehaving in a public place. Weird.
So, back again to the loot. I am seriously amazed at how giving people are. At first, I felt guilty about the obscene amount of giving, but I slowly started to realize something. Cancer is a tricky (insert your level of obscenity here--I've got a wide variety of people reading this). Melanoma is especially tricky. Treatment is hard and not very effective for my stage. Ok, that part I knew. Here's the realization: People want to cure you and make you better. They can't do that, so it makes them feel better to help you. But guess what? All you people have NO idea how much it actually does help.
Every smile, pat (just don't pat my left arm or any part of my back...you know what can we just quit with the pats already? Though well intentioned, someone's gonna get a reflex slap.), prayer, prayer, prayer, ridiculous treatment option you know of that so and so took when his body was riddled with cancer, but now they are cured, but the doctors told him he wouldn't live past the year, all of the above mentioned things plus more I probably forgot, make this doo doo situation so much more bearable.
I'm gratful beyond words and even though I have only written one thank you note (that is addressed and stamped somewhere in my van), you can't blame me because in case you didn't know, I'm that sweet young mother of 3 small children who has been stricken with *hushed tones* cancer.
Back to the loot. I've gotten meals, cards, letters, monetary dontations, slippers, jammies, blankets, foot creams, inspirational jewlery, chicken soup, candy, books, magazines, clothes, A LADY COMES TO CLEAN MY HOUSE!!!, stuff for my kids, my sister has visited me 3 times and my dad once, another sister comes over most Tuesdays and we sit and watch movies and she watches me sleep, my mom comes over to help me clean and again watch me sleep, my MIL watches my kids on Tuesdays and any other day I need her to, my sweet cousin and FIL mow the grass every Saturday (that may seem like something for Eddie's list of loot, but actually it's more for me. Eddie is impervious to the evil glances and passive aggressive comments about the yard. In their defense, they do not know about my cancer and cannot be expected to treat me accordingly with helpful offers, heart felt smiles or inspiring stories of someone they knew that had testicular cancer and lived).
That reminds me, I have gotten so used to people treating me in this manner, that now, it surprises me when they don't. Like how dare the lady at the check out counter glare at me when my children misbehave? I have some other examples, but for some reason, all of them involve my children misbehaving in a public place. Weird.
So, back again to the loot. I am seriously amazed at how giving people are. At first, I felt guilty about the obscene amount of giving, but I slowly started to realize something. Cancer is a tricky (insert your level of obscenity here--I've got a wide variety of people reading this). Melanoma is especially tricky. Treatment is hard and not very effective for my stage. Ok, that part I knew. Here's the realization: People want to cure you and make you better. They can't do that, so it makes them feel better to help you. But guess what? All you people have NO idea how much it actually does help.
Every smile, pat (just don't pat my left arm or any part of my back...you know what can we just quit with the pats already? Though well intentioned, someone's gonna get a reflex slap.), prayer, prayer, prayer, ridiculous treatment option you know of that so and so took when his body was riddled with cancer, but now they are cured, but the doctors told him he wouldn't live past the year, all of the above mentioned things plus more I probably forgot, make this doo doo situation so much more bearable.
I'm gratful beyond words and even though I have only written one thank you note (that is addressed and stamped somewhere in my van), you can't blame me because in case you didn't know, I'm that sweet young mother of 3 small children who has been stricken with *hushed tones* cancer.
Saturday, June 4, 2011
A Deal's a Deal
I was sitting in the waiting room at one of my many dr appointments on Monday perusing a celebrity rag mag. I came across an article on a certain celeb couple who had the inside of their rings inscribe with the words "A deal's a deal." That really hit home with me right now. That pretty much sums up where my sweet husband and I are right now. We are supporting each other not because we are so happy and in love (don't get me wrong, we absolutely LOVE each other) but because that is the deal we made. We've agreed to stick it out.
I was thinking about our wedding day and wondered how things would have gone if when the preacher said in sickness and in health, the micro machine guy popped up saying:
"Sickness will include but not be limited to a bout with malignant melanoma that will leave your wife scarred, sick, grouchy, uninterested in sex or even being touched for that matter because her body will constantly be uncomfortable. Her hair will come out in clumps and it will bother her so much that she will complain about that the most. She will struggle on and off with depression, but refuse to accept help the doctors will try to offer. She will spend alot of time sleeping and leave you to care for the children. Most days she will be unable to do menial tasks. She will be unable to remember important things you've asked her to do and as a result, you will be in charge of most of the household responsibilities. Things will basically be miserable for an undisclosed amount of time."
Right now there are no deep, meaningful kisses, snuggles on the couch or date nights. Smiles and laughter are few and far between. Many nights we don't even spend in the same bed because I can't bear to be touched or moved. Things are not carefree. We used to talk about our future or where we would be in in X amount of years. Now, we talk about treatment options, friends who have received bad scans, upcoming appointments, who will take care of the children and how I'm feeling, or we simply don't talk at all. There is always a nagging feeling of worry.
I worry alot about cancer and recurrence and the future. One thing I NEVER worry about is getting through this with my marriage in tact. I also know that this experience has and will continue to make us stronger. We are in this and I know that he will be right there with me through whatever happens in this life together because after all, a deal's a deal.
I was thinking about our wedding day and wondered how things would have gone if when the preacher said in sickness and in health, the micro machine guy popped up saying:
"Sickness will include but not be limited to a bout with malignant melanoma that will leave your wife scarred, sick, grouchy, uninterested in sex or even being touched for that matter because her body will constantly be uncomfortable. Her hair will come out in clumps and it will bother her so much that she will complain about that the most. She will struggle on and off with depression, but refuse to accept help the doctors will try to offer. She will spend alot of time sleeping and leave you to care for the children. Most days she will be unable to do menial tasks. She will be unable to remember important things you've asked her to do and as a result, you will be in charge of most of the household responsibilities. Things will basically be miserable for an undisclosed amount of time."
Right now there are no deep, meaningful kisses, snuggles on the couch or date nights. Smiles and laughter are few and far between. Many nights we don't even spend in the same bed because I can't bear to be touched or moved. Things are not carefree. We used to talk about our future or where we would be in in X amount of years. Now, we talk about treatment options, friends who have received bad scans, upcoming appointments, who will take care of the children and how I'm feeling, or we simply don't talk at all. There is always a nagging feeling of worry.
I worry alot about cancer and recurrence and the future. One thing I NEVER worry about is getting through this with my marriage in tact. I also know that this experience has and will continue to make us stronger. We are in this and I know that he will be right there with me through whatever happens in this life together because after all, a deal's a deal.
Monday, May 30, 2011
Tonight's Forecast: Achey with a 95% chance of freezing
I dread Monday night injections the most. I've had 3 days of no Intron in my body and I can just start to feel a glimpse of my former self. But alas, here is Monday. At around 8, I will grudgingly go get my kit o doom, sit at the kitchen table and prepare my treatment. I'll try and post a video of the whole process soon, so I won't go into the details just yet.
Sometime between 2 and 4 I'll slowly start to awaken to a body full of aches and pains. Even though I know it is coming and I've done this several times over, it always surprises me for a few seconds. I will undoubtedly try to ignore what is happening and lay as still as I can. It never works. Then I will realize that I have to pee and that I am going to have to get up to do this. I also know that I'm going to have to get to the kitchen and take a tylenol/advil or I will never get any sleep.
Every time it is the same ridiculous dialouge with myself. It goes something like "Oh, it's not that bad." "I really don't want to get up." "Uh, but I really HAVE to pee." "Just get up and get this over with already." "Fine, on the count of three this is happening."
Here's the problem: I will be freezing cold and I know that as soon as I step foot out of my bed, the shakes will start. Oh the shakes. Eddie says sleeping with me is like putting a quarter into one of those massage beds I've only ever seen on tv. It is also extremely difficult to pee with extreme shivers.
So, I'll hurry as fast as I can and assess if it will be a 2-3 blanket night. I will hop back into bed fighting the shakes and hopefully in about 30 minutes my pain reliever will kick in and I can drift off to sleep.
I'll wake up tomorrow morning to skin that is crawling. I call it "flu skin." You know when you are sick and your skin just hurts. My legs will ache, my mouth will be bone dry and my eyes will be glued shut. Intron is very drying.
I will do all of this with a smile on my face and a skip in my step. Not really. I'll most likely be a complete...errr...ahem...let's say grouch tomorrow.
Sometime between 2 and 4 I'll slowly start to awaken to a body full of aches and pains. Even though I know it is coming and I've done this several times over, it always surprises me for a few seconds. I will undoubtedly try to ignore what is happening and lay as still as I can. It never works. Then I will realize that I have to pee and that I am going to have to get up to do this. I also know that I'm going to have to get to the kitchen and take a tylenol/advil or I will never get any sleep.
Every time it is the same ridiculous dialouge with myself. It goes something like "Oh, it's not that bad." "I really don't want to get up." "Uh, but I really HAVE to pee." "Just get up and get this over with already." "Fine, on the count of three this is happening."
Here's the problem: I will be freezing cold and I know that as soon as I step foot out of my bed, the shakes will start. Oh the shakes. Eddie says sleeping with me is like putting a quarter into one of those massage beds I've only ever seen on tv. It is also extremely difficult to pee with extreme shivers.
So, I'll hurry as fast as I can and assess if it will be a 2-3 blanket night. I will hop back into bed fighting the shakes and hopefully in about 30 minutes my pain reliever will kick in and I can drift off to sleep.
I'll wake up tomorrow morning to skin that is crawling. I call it "flu skin." You know when you are sick and your skin just hurts. My legs will ache, my mouth will be bone dry and my eyes will be glued shut. Intron is very drying.
I will do all of this with a smile on my face and a skip in my step. Not really. I'll most likely be a complete...errr...ahem...let's say grouch tomorrow.
Saturday, May 28, 2011
Why the wait?
Ok, so why wait so long to start a blog? I tried to start one a few years ago, but realized that my life was pretty boring and I remembered that I had 3 kids and it was too hard to try to keep up a blog.
My diagnosis was in Nov and I asked my doctor if I could start treatment in Jan so I could have the holidays without being sick on treatment. He said that would be ok. So that gave me almost two months to imagine all sorts of things. I did what any normal person would do and sought expert advice....the internet. I basically burned my eyeballs out searching anything I could find about Melanoma. I was trying so hard to find out about Interferon and the side effects and just basically what to expect. The problem was that almost every blog I found ended in ""warrior" just lost their heroic battle to Melanoma". I decided that I did not want to die in real life and on the internet. No blogs for me!
I did my month of high dose Interferon when I came across a FB page called AIM at Melanoma. I found so many people that were in the same place as me. They were still alive and doing well. Those people have been such an encouragement to me, but I still wasn't ready to commit to a blog.
Cut to Leila's kindergarten graduation. During her program, they had a slideshow. I watched her program fighting back tears. Now, I wasn't sad because she was graduating Kindergarten. I am proud of her and want her to grow older and have a producive life. I was sad because last year, I could've told you about every picture of her year. I was there. I was present. I was a good mommy. I sat there looking at the picures of her year thinking that I don't even know what that day was or who that classmate is or what they were doing. It was at that moment that I really realized how much of the year had been taken from me.
So now I start this blog so that I can look back and remember in some way what has happened. I'm here and I experience things everyday, but I can't always remember. Hopefully, with this blog I can go back and read and it will provide some sort of record for me. Each day is a gift to me now and I guess I just want to remember them and if I can't remember, I hope this blog will remind me.
My diagnosis was in Nov and I asked my doctor if I could start treatment in Jan so I could have the holidays without being sick on treatment. He said that would be ok. So that gave me almost two months to imagine all sorts of things. I did what any normal person would do and sought expert advice....the internet. I basically burned my eyeballs out searching anything I could find about Melanoma. I was trying so hard to find out about Interferon and the side effects and just basically what to expect. The problem was that almost every blog I found ended in ""warrior" just lost their heroic battle to Melanoma". I decided that I did not want to die in real life and on the internet. No blogs for me!
I did my month of high dose Interferon when I came across a FB page called AIM at Melanoma. I found so many people that were in the same place as me. They were still alive and doing well. Those people have been such an encouragement to me, but I still wasn't ready to commit to a blog.
Cut to Leila's kindergarten graduation. During her program, they had a slideshow. I watched her program fighting back tears. Now, I wasn't sad because she was graduating Kindergarten. I am proud of her and want her to grow older and have a producive life. I was sad because last year, I could've told you about every picture of her year. I was there. I was present. I was a good mommy. I sat there looking at the picures of her year thinking that I don't even know what that day was or who that classmate is or what they were doing. It was at that moment that I really realized how much of the year had been taken from me.
So now I start this blog so that I can look back and remember in some way what has happened. I'm here and I experience things everyday, but I can't always remember. Hopefully, with this blog I can go back and read and it will provide some sort of record for me. Each day is a gift to me now and I guess I just want to remember them and if I can't remember, I hope this blog will remind me.
Friday, May 27, 2011
Intro to the blogging world
I'm joining the blogging world. Mostly because I'm hoping that it will serve as a record of the goings on. One thing that no one tells you is that treatment steals your time and your memories.
I'm going to try very hard to be honest about my day and my feelings and my cancer. If you are offended by doo doo, then this is probably not the blog for you to be reading. I'll probably mostly talk about my cancer cause if you've ever had it, you know that it's always kind of somewhere in your mind. At least it is for me right now.
I'm going to try very hard to be honest about my day and my feelings and my cancer. If you are offended by doo doo, then this is probably not the blog for you to be reading. I'll probably mostly talk about my cancer cause if you've ever had it, you know that it's always kind of somewhere in your mind. At least it is for me right now.
Subscribe to:
Posts (Atom)