Ethan was pretty miserable Wednesday, didn't want to be held or messed with. Just wanted to lay in his bed and listen to Taylor Swift on his iPod. He threw a good number of temper tantrums complete with biting his oxygen mask and grabbing the tubing and pulling it off his face a few times. I think he was really pissed off that he couldn't squeeze all his fingers though the little hole on the side of the mask and shove them in his mouth!
Not that I blame him in the least bit. Let's see, what did we find out yesterday???
He is, wait, was, constipated. Good ole molasses enema took care of that.
He's still on 5 liters of 30% oxygen by face mask.
His virus panel was positive for three viruses: parainfluenza virus, rhinovirus, and enterovirus.
Sounds like the bubonic plague, right? Nope-would only be cold-like symptoms in most people.
He got more Vancomycin and Rocephin, and thus lost his only IV.
So Vascular Access had to be called to get him a new IV
AND he got stuck once more in his hand and finally his cute little bald head for the BNP.
I might be kinda pissed off too.
Good news? Echo unchanged from July. BNP normal-no failure. Thus the Cardiology service punted him to Silver Team. Which we are ok with!
Bad news? Ethan is terribly ill from minor viruses, so they are concerned his immunoglobulin dose is not enough or not working. Easy fix? Increase dose right? Unfortunately we can't because his liver function tests are borderline high and increasing that med is contraindicated in that case. So back to the drawing board with Immunology has got to happen soon.
They are going to put him on an aggressive asthma action plan to try and stay ahead of the respiratory crap this winter.
In the meantime, they have got to try and wean him off oxygen to get him home, so it will clearly be a few days before he's home.
I will update later today when we know more!
Thursday, October 11, 2012
Wednesday, October 10, 2012
Welcoming fall, good and bad!
It's October, and that time of year again.....
Cooler weather
Sweatshirts and flannel jammies
Hot cocoa and apple cider
Weston Irish Fest
Irish car bombs and Seth drinks ( hot apple cider and cinnamon Schnapps-yum!)
Halloween
Hospital stays
And new this October- a newly licensed driver in our house!
Yep, Hailey got her license this week, and has tried to think of any and every excuse to leave the house. I could really work that to my advantage.
Need groceries? Hailey.
Need gas? Hailey.
Need prescriptions picked up? Hailey.
Brothers need a ride somewhere? Hailey.
We'll see how long the newness lasts at that rate!
I'm sure most of you know by now that Ethan was admitted to Children's Mercy on Tuesday evening. He's been on a slow decline for a couple of weeks now, all finally came to a head and here we are 4 Sutherland Room 5. His sats are crappy-he was 86 on admission. They got him 92 on 5 liters of oxygen by face mask, so they tried switching him to a nasal cannula, but he kept dropping to high 70's with 5 liters. So they went back to a face mask, but at 8 liters couldn't keep him above 87. Respiratory came in and decided to switch him to a different mask called a Venturi mask that delivers 40% oxygen, still on 6 liters, but hanging at 96. This mask helps tell how much oxygen he is truly requiring, as it mixes oxygen with the regular air we breathe. And I may be completely wrong on that explanation-it's how I understood it. I'm an RT, but not that kind! Since Ethan is a mouth breather, it makes it difficult to tell how much he really is needing.
They drew blood cultures, and then gave him a dose of Rocephin and Vancomycin-antibiotics. Transport team mentioned they were starting right off with the big guns for him! Yeah, we can't afford to mess around. Blood culture results won't start showing up for 12-24 hours, depending on if there is an infection brewing.
Immunology has been consulted tonight. They had no suggestions at this point, but will get involved if needed as labs come back.
X-rays of chest and abdomen were taken. No big pneumonia on the chest. So concerning for high O2 need and fever of 102. No results on abdomen films yet.
Labs show sed rate elevated-which is an inflammatory marker indicating a process of some type going on. White count NOT elevated, so kind of confusing.
They think he is having febrile seizures, as he seems to have these funky quivers of his legs. Or they think it could be shivering from being cold, but having a fever. His hands and feet are mottled and cold and blue. So even with the fever they have piled on the warm blankets.
One of the nurses at CMH North knows Ethan well, and said she knew he was sick when she stuck him, and no one had to hold him down. Only 3 sticks to get blood and an IV, and only one more for cultures. At one point they were talking about getting access by way of IO if needed. Glad we didn't have to do that! IO means intraosseous, where immediate access is gained by injecting directly into the bone marrow. This is obtained by putting the needle right into the leg below the knee cap. I say needle, but it's much more than a regular IV needle. Google it-it's creepy looking. And painful looking. Again- glad we didn't have to go that route! They are keeping him on the antibiotic doses, and he's getting his second dose of Rocephin now-which clearly burns going in by the reaction I'm getting. And he will get another dose of Vanc in the am. Hoping the little hand IV he has holds out
for these heavy duty drugs!
The big question in the back of my mind, and I think the team's mind is the million dollar one. Is his leaking new pulmonary valve the culprit here?? This is the same crap we went through a year ago before finding out he was in heart failure and being admitted to the ICU-after 3 separate admissions just like this. I have asked for his BNP-Brain Natriuretic Peptide to be drawn, but the residents on tonight are punting that decision to the attendings in the a.m. Don't think I'm letting that one go. It's the one test last year that gave us a definitive answer he was in failure. On a scale of 1-10 in kids- his was markedly elevated at 3300. I don't want it to get that bad if we can help it.
I may have to pull out the pitiful cancer card to get my way if needed.
If not, I'll try throwing myself on the floor kicking and screaming.
This same post will be on his carepage for those of you who check that too!
Gotta go, sats dropping again, getting a roomful of concerned nurses. More later.
Cooler weather
Sweatshirts and flannel jammies
Hot cocoa and apple cider
Weston Irish Fest
Irish car bombs and Seth drinks ( hot apple cider and cinnamon Schnapps-yum!)
Halloween
Hospital stays
And new this October- a newly licensed driver in our house!
Yep, Hailey got her license this week, and has tried to think of any and every excuse to leave the house. I could really work that to my advantage.
Need groceries? Hailey.
Need gas? Hailey.
Need prescriptions picked up? Hailey.
Brothers need a ride somewhere? Hailey.
We'll see how long the newness lasts at that rate!
I'm sure most of you know by now that Ethan was admitted to Children's Mercy on Tuesday evening. He's been on a slow decline for a couple of weeks now, all finally came to a head and here we are 4 Sutherland Room 5. His sats are crappy-he was 86 on admission. They got him 92 on 5 liters of oxygen by face mask, so they tried switching him to a nasal cannula, but he kept dropping to high 70's with 5 liters. So they went back to a face mask, but at 8 liters couldn't keep him above 87. Respiratory came in and decided to switch him to a different mask called a Venturi mask that delivers 40% oxygen, still on 6 liters, but hanging at 96. This mask helps tell how much oxygen he is truly requiring, as it mixes oxygen with the regular air we breathe. And I may be completely wrong on that explanation-it's how I understood it. I'm an RT, but not that kind! Since Ethan is a mouth breather, it makes it difficult to tell how much he really is needing.
They drew blood cultures, and then gave him a dose of Rocephin and Vancomycin-antibiotics. Transport team mentioned they were starting right off with the big guns for him! Yeah, we can't afford to mess around. Blood culture results won't start showing up for 12-24 hours, depending on if there is an infection brewing.
Immunology has been consulted tonight. They had no suggestions at this point, but will get involved if needed as labs come back.
X-rays of chest and abdomen were taken. No big pneumonia on the chest. So concerning for high O2 need and fever of 102. No results on abdomen films yet.
Labs show sed rate elevated-which is an inflammatory marker indicating a process of some type going on. White count NOT elevated, so kind of confusing.
They think he is having febrile seizures, as he seems to have these funky quivers of his legs. Or they think it could be shivering from being cold, but having a fever. His hands and feet are mottled and cold and blue. So even with the fever they have piled on the warm blankets.
One of the nurses at CMH North knows Ethan well, and said she knew he was sick when she stuck him, and no one had to hold him down. Only 3 sticks to get blood and an IV, and only one more for cultures. At one point they were talking about getting access by way of IO if needed. Glad we didn't have to do that! IO means intraosseous, where immediate access is gained by injecting directly into the bone marrow. This is obtained by putting the needle right into the leg below the knee cap. I say needle, but it's much more than a regular IV needle. Google it-it's creepy looking. And painful looking. Again- glad we didn't have to go that route! They are keeping him on the antibiotic doses, and he's getting his second dose of Rocephin now-which clearly burns going in by the reaction I'm getting. And he will get another dose of Vanc in the am. Hoping the little hand IV he has holds out
for these heavy duty drugs!
The big question in the back of my mind, and I think the team's mind is the million dollar one. Is his leaking new pulmonary valve the culprit here?? This is the same crap we went through a year ago before finding out he was in heart failure and being admitted to the ICU-after 3 separate admissions just like this. I have asked for his BNP-Brain Natriuretic Peptide to be drawn, but the residents on tonight are punting that decision to the attendings in the a.m. Don't think I'm letting that one go. It's the one test last year that gave us a definitive answer he was in failure. On a scale of 1-10 in kids- his was markedly elevated at 3300. I don't want it to get that bad if we can help it.
I may have to pull out the pitiful cancer card to get my way if needed.
If not, I'll try throwing myself on the floor kicking and screaming.
This same post will be on his carepage for those of you who check that too!
Gotta go, sats dropping again, getting a roomful of concerned nurses. More later.
Wednesday, September 19, 2012
Sweet 16....is that really possible?
My beautiful Hailey Jayne turned 16 on Sunday!
These are the cookies our friend Michelle made her. Some are tie-dye, some are little VW bugs, some are the number 16 and some are her name. ALL were delicious because they didn't last long around here. !Michelle also made her a yummy white cake. No, it didn't last long either!
This is my dear friend Sarah- who was there the day Hailey was born-or I should say through the entire two days of labor and eventual c-section
We had a small family party at home, and our social bug 16 year old left us to go to Worlds of Fun Halloween Haunt with her cousin and his friend who came in town from Wichita. Oh well, I guess I better get used to it!
We are enrolling her in a drivers class next week because having Brian and I teach her is going ok but she needs the class. I have been paying waaaay more attention to my mad driving skills since working with her, and that's about all I can say about them. Mad. And in watching others drive too I've come to the realization more people should have taken a class. It's actually kinda scary. And scares me to send my baby out there on the road. And it's not like we live in a small town, there will be highway driving for her almost everywhere she goes. Oh, I meant to say autobahn driving, cause I don't think anyone drives the speed limit anymore. Though I will admit some hypocrisy there, I used to be a terrible speed demon. I've learned to slow down and appreciate the ride more, in more ways than just driving.
Parker so enjoyed playing with the marching band at Staley Friday night. This is a pic Teresa sent me. She and my Dad went to hear him! Said he was in step the whole time. He's being recruited for the high school band for next year, and his band teacher is talking about switching him to a different saxophone. Can you find P? Front row. Second from the left!
This is our newest family addition. Frankie. He is an 8 week old English Bulldog. And yes, we are crazy and no Williams you still can't have George!
I almost forgot to mention I had my knee scope done Tuesday and Dr Thomas cleaned up the meniscus tear nicely. He said my arthritis is terrible and since there is no fixing that, he was surprised my other knee hadn't bothered me yet. So I'm hanging out at home with the remote, ice and pain meds for the next 24 hours. I'm supposed to get up and start walking on it tomorrow, but honestly I've been up and down our stairs three times so far. Not too bad, just a little slow. Off work for one week, my follow up is next Tuesday, and I'm hoping to be able to go back to work that night!
As soon as they give me the green light-I'll be getting my workouts back on! My goal is to be down 75 lbs by the Policeman's Ball 2013 the RIGHT way. Diet and exercise! Right James? Got it!!
FYI I may be a cranky hot mess for the next 5 months.
You have been warned.
These are the cookies our friend Michelle made her. Some are tie-dye, some are little VW bugs, some are the number 16 and some are her name. ALL were delicious because they didn't last long around here. !Michelle also made her a yummy white cake. No, it didn't last long either!
This is my dear friend Sarah- who was there the day Hailey was born-or I should say through the entire two days of labor and eventual c-section
We had a small family party at home, and our social bug 16 year old left us to go to Worlds of Fun Halloween Haunt with her cousin and his friend who came in town from Wichita. Oh well, I guess I better get used to it!
We are enrolling her in a drivers class next week because having Brian and I teach her is going ok but she needs the class. I have been paying waaaay more attention to my mad driving skills since working with her, and that's about all I can say about them. Mad. And in watching others drive too I've come to the realization more people should have taken a class. It's actually kinda scary. And scares me to send my baby out there on the road. And it's not like we live in a small town, there will be highway driving for her almost everywhere she goes. Oh, I meant to say autobahn driving, cause I don't think anyone drives the speed limit anymore. Though I will admit some hypocrisy there, I used to be a terrible speed demon. I've learned to slow down and appreciate the ride more, in more ways than just driving.
Parker so enjoyed playing with the marching band at Staley Friday night. This is a pic Teresa sent me. She and my Dad went to hear him! Said he was in step the whole time. He's being recruited for the high school band for next year, and his band teacher is talking about switching him to a different saxophone. Can you find P? Front row. Second from the left!
This is our newest family addition. Frankie. He is an 8 week old English Bulldog. And yes, we are crazy and no Williams you still can't have George!
I almost forgot to mention I had my knee scope done Tuesday and Dr Thomas cleaned up the meniscus tear nicely. He said my arthritis is terrible and since there is no fixing that, he was surprised my other knee hadn't bothered me yet. So I'm hanging out at home with the remote, ice and pain meds for the next 24 hours. I'm supposed to get up and start walking on it tomorrow, but honestly I've been up and down our stairs three times so far. Not too bad, just a little slow. Off work for one week, my follow up is next Tuesday, and I'm hoping to be able to go back to work that night!
As soon as they give me the green light-I'll be getting my workouts back on! My goal is to be down 75 lbs by the Policeman's Ball 2013 the RIGHT way. Diet and exercise! Right James? Got it!!
FYI I may be a cranky hot mess for the next 5 months.
You have been warned.
Thursday, September 6, 2012
I couldn't make this s*** up if I tried!
Yep. Total drama. All the time around here anymore.
Remember my knee injury/pain from last year? Well, after about 2 weeks back at work, the pain was back with a vengeance. It's not too terribly bad just walking on it, but going up or down stairs was not happening. Since I've done anti-inflammatories, ice, icy hot like burning smelly stuff you rub on those aching body parts, rest (well, at least while I was on chemo anyway) my doctor decided it was time for an MRI. I apparently have a torn medial meniscus, joint effusion, bony edema and osteoarthritis.
In non-medical speak: crappy knee.
I am, however, hearing that having the tear in the cartilage cleaned up is a miraculous fix, and recovery is pretty quick. Since I just managed to get my PTO hours back in the double digits, it will be nice to not have to use it all with another surgery. I'm seeing an orthopedic surgeon on Monday the 10th, and hoping I leave there with a surgery date.
I had my "end of treatment" appointment with my fab NP Jennifer and got lots of information. My CA27-29, which is the tumor marker we will check every three months for the first two years was 40. 0-38 is normal with 0 not being any better than 38. My 40 was not surprising to them since it was drawn 4 weeks post chemo. It needs to stay in that general area, and no further testing will be done. Should it jump to say 60 they would probably order a CT or PET Scan or Bone Scan. Until then, and hopefully never, no unnecessary radiation.
The CA27-29 is not known for being 100% accurate, as no tumor marker really is. However, since my cancer was so highly estrogen receptive, this test is very sensitive to changes in the body. So in my case if that number does go crazy high, it's more than likely I have a recurrence.
Again-not gonna happen. Just sharing all my new education.
My vitamin D was back within normal limits, so I just have to take a small daily dose instead of a weekly dose of a bajillion units.
My echo (ultrasound of my heart) showed my ejection fraction is now 55, whereas prior to chemo it was 60. Again, not surprising, as the Adriamycin is known for its cardiotoxicity. Not terrible, still within normal limits. Just have to take some Fish Oil Omega-3 and be "heart healthy" and it could improve. Not being able to walk, or do a lunge, or squat, or a push up because of my knee pain is crimping my heart healthy goals.
Also interestingly enough, all the latest trend with eating healthy by way of soy milk and products is not good for me. Since my cancer was highly estrogen receptive, I am actually supposed to avoid soy.
Drats. And I was craving me a soy burger and soy milkshake. Never.
Did I mention I almost ripped my pinky toe off byway of the bathroom door? Lovely, huh? This is the morning after I did it, two days later the bruise spread all across the base of my piggies and up my mid foot. At least I had just had a pedi.
And this was just about 3 weeks ago.
I also walked the Race for the Cure on August 12th with lots of wonderful friends and co-workers!
I didn't break any records, but I did walk the whole 5K.
And this is him sitting unassisted for 4 whole minutes! Go Ethan!!
Remember my knee injury/pain from last year? Well, after about 2 weeks back at work, the pain was back with a vengeance. It's not too terribly bad just walking on it, but going up or down stairs was not happening. Since I've done anti-inflammatories, ice, icy hot like burning smelly stuff you rub on those aching body parts, rest (well, at least while I was on chemo anyway) my doctor decided it was time for an MRI. I apparently have a torn medial meniscus, joint effusion, bony edema and osteoarthritis.
In non-medical speak: crappy knee.
I am, however, hearing that having the tear in the cartilage cleaned up is a miraculous fix, and recovery is pretty quick. Since I just managed to get my PTO hours back in the double digits, it will be nice to not have to use it all with another surgery. I'm seeing an orthopedic surgeon on Monday the 10th, and hoping I leave there with a surgery date.
I had my "end of treatment" appointment with my fab NP Jennifer and got lots of information. My CA27-29, which is the tumor marker we will check every three months for the first two years was 40. 0-38 is normal with 0 not being any better than 38. My 40 was not surprising to them since it was drawn 4 weeks post chemo. It needs to stay in that general area, and no further testing will be done. Should it jump to say 60 they would probably order a CT or PET Scan or Bone Scan. Until then, and hopefully never, no unnecessary radiation.
The CA27-29 is not known for being 100% accurate, as no tumor marker really is. However, since my cancer was so highly estrogen receptive, this test is very sensitive to changes in the body. So in my case if that number does go crazy high, it's more than likely I have a recurrence.
Again-not gonna happen. Just sharing all my new education.
My vitamin D was back within normal limits, so I just have to take a small daily dose instead of a weekly dose of a bajillion units.
My echo (ultrasound of my heart) showed my ejection fraction is now 55, whereas prior to chemo it was 60. Again, not surprising, as the Adriamycin is known for its cardiotoxicity. Not terrible, still within normal limits. Just have to take some Fish Oil Omega-3 and be "heart healthy" and it could improve. Not being able to walk, or do a lunge, or squat, or a push up because of my knee pain is crimping my heart healthy goals.
Also interestingly enough, all the latest trend with eating healthy by way of soy milk and products is not good for me. Since my cancer was highly estrogen receptive, I am actually supposed to avoid soy.
Drats. And I was craving me a soy burger and soy milkshake. Never.
Did I mention I almost ripped my pinky toe off byway of the bathroom door? Lovely, huh? This is the morning after I did it, two days later the bruise spread all across the base of my piggies and up my mid foot. At least I had just had a pedi.
Oh, and my hair is growing like crazy. My eyebrows were non existent, and then BAM one day I have a patchy unibrow. They are hard to pluck because they are baby fine.
VvMy eyelashes kinda did the same thing. But I must say they seem to be growing back nice and thick, which I'm more than happy with
And this was just about 3 weeks ago.
I also walked the Race for the Cure on August 12th with lots of wonderful friends and co-workers!
I didn't break any records, but I did walk the whole 5K.
Everyone else is doing ok around here. Back in school, arguing about homework and that 20 minutes of reading is actually 20 full minutes. Not 5 minutes.
Parker will be playing in the pre-game band performance before Staley's home game next Friday the 14th. He is playing the saxophone again this year, and he is excited learning the national anthem and the Staley fight song!
Hailey is playing on a semi-competitive fall volleyball team, and her games start that night too. She has also already signed for a competitive club team for 2013 because the coach saw her at one of her practices and liked her style. She is also getting some private lessons to improve on some of her skills and hitting. In just two hour-long sessions she has learned more about technique and body placement and serving than she did in the previous 3 years of club ball. She is hitting the ball hard now, and knows how to place it. Her hitting approach has always been a challenge, and she's doing awesome with that! She also learned two new serves, and is consistently putting up placed serves! We are excited for club season this year!
Oh, and she turns *egads* 16 in 10 days...where did the time go??? And is loving learning to drive. Let's just say Brian is much better taking her out to practice than I am, I'm kind of a nervous wreck. But she does really well in her cute little car. I'm going to be sad when she gets her license and I have to give it back to her.....
Ethan is back in school and doing well so far. A few crummy days. His allergies and asthma are really acting up with this weather. He's had a couple days of fevers, difficulty breathing and purplish black feet. But we saw Pulmonology a week ago and she didn't seem concerned, so we just keep plugging away. This is a pic from Ethan's summer school teacher Ms Kristi. He holds the American flag every morning for the pledge of allegience! We are so proud of our little guy!! And I love seeing these pics, because he doesn't do this stuff at home with us, so I was beginning to wonder if they were just making it up at school?!?!?
Please include the Robert Barenklau family in your prayers. His family was the other recipient of the Guns-N-Hoses bike ride. He recently learned his cancer has returned and his in his lungs. They are a very nice family, and this just sucks-cause there is no other way to say it. Keep your chin up Robert-you can fight this and have lots of people supporting you!!
Wednesday, August 22, 2012
Back to reality....
It's been almost 6 weeks since I finished my chemo, and we are finally getting back to normal around our house! And by normal-I mean as normal as possible for us, and definitely not the same as anyone else's normal. I'm ok with that most days, I'm used to the craziness by now.
I'm starting my fourth week back to work full time, and I'm loving it. My right knee is acting up again, and being back on it 40 hrs. a week isn't helping. I have an MRI scheduled next week to see what is going on, and if it needs more intervention than the ice, brace and drugs I'm currently using.
I swear I broke my toe at home yesterday banging my pinky toe on the bathroom door, and after I was complaining about that and my knee, I was unplugging a patient bed and smacked my thumb on the counter cutting it. Just as I said to my co-workers that I didn't think I could possibly cause any more injury to myself tonight, I went to sit down in the chair and it rolled away from me and I landed on my behind on the floor. Seriously-normal.
I got my port out and it is healing nicely. I got my tumor marker blood work done- the CA 27.29 and it was within normal limits, we will repeat every three months for the first year. I have an echo of my heart this week to make sure the chemo didn't damage it. And I started on my Tamoxifen a couple of weeks ago. The hot flashes are getting better, but sleeping not so much. My hair is growing in even more, and it makes my head itch. Had to shave my legs for the first time this week in 5 months. I'm trying to take off the 20 lbs I gained from all the steroids I was on with the Taxol, my face is still so moon shaped round, and it really took a toll on my skin. The spot on my left cheek where the shingles were is still there, and they don't think it will go away-kind of like a reddish scar, and ugly. But hey, I'm alive and blessed to be! Enough about me.
Kids are all back at school. Hailey a sophomore, Parker in 8th grade, and Ethan-well, whatever grade you want to call it, I'm not even sure. Ethan is particularly happy to be back in a routine, and when he's happy, we all are! Hailey will be 16 in a few weeks, oh my geez. We have had to break Parker's summer addiction to the playstation, so he will be moody for a few weeks I'm sure. Brian is working as usual, and getting some golf games in. Our schedules seem to be working pretty well so far.
Hailey didn't make the JV Volleyball team, and that brought about a whole lot of tears and teenage girl drama, but we are all good now. Brian and I are firm believers that the world went to shit the minute they stopped keeping score at little league games and everyone was a winner, but man it's hard when you have to break that reality to your kid. Someone was better than you, it sucks, but it's life. Get used to it now and it won't be so hard to accept when you are 25 and have to live in the real world. Lesson we gave her: work hard, stay determined and focused, try out again next year. She picked herself up pretty quick. It may have even been harder for me, because I was in a funk with the "what crap can happen next to us?" mode. Hailey is such a good kid who is far more mature than most other kids her age just because of what our lives have been like for so long, she just deserved it. Or so this Mom thinks!
Some co-workers and friends and I walked the Race for the Cure 5K on the 12th, and I did pretty good. As we walked past the start Carissa dragged me over to the announcer yelling out survivor's years, and when she heard I was a 1 month survivor she made me get up on stage. Not sure I made any sense with the crying I was doing. But man, what a great end to my battle-the walk one month to the day I finished my chemo. Now, I know my battle is not over completely, but as far as I'm concerned I beat this and life only goes forward from here.
That's about all I know for now. We went to Colorado in late July and never wanted to come home, but that's normal when we go out there! Brian and I are planning for our Irish Fest weekend in October with good friends, good food, and great shopping. In the meantime, I'm going to try not to injure myself any more, and enjoy getting a paycheck!
Love and hugs.
Ps-does anyone know how to download pics from my iPad to my blog? I can't figure it out!!
I'm starting my fourth week back to work full time, and I'm loving it. My right knee is acting up again, and being back on it 40 hrs. a week isn't helping. I have an MRI scheduled next week to see what is going on, and if it needs more intervention than the ice, brace and drugs I'm currently using.
I swear I broke my toe at home yesterday banging my pinky toe on the bathroom door, and after I was complaining about that and my knee, I was unplugging a patient bed and smacked my thumb on the counter cutting it. Just as I said to my co-workers that I didn't think I could possibly cause any more injury to myself tonight, I went to sit down in the chair and it rolled away from me and I landed on my behind on the floor. Seriously-normal.
I got my port out and it is healing nicely. I got my tumor marker blood work done- the CA 27.29 and it was within normal limits, we will repeat every three months for the first year. I have an echo of my heart this week to make sure the chemo didn't damage it. And I started on my Tamoxifen a couple of weeks ago. The hot flashes are getting better, but sleeping not so much. My hair is growing in even more, and it makes my head itch. Had to shave my legs for the first time this week in 5 months. I'm trying to take off the 20 lbs I gained from all the steroids I was on with the Taxol, my face is still so moon shaped round, and it really took a toll on my skin. The spot on my left cheek where the shingles were is still there, and they don't think it will go away-kind of like a reddish scar, and ugly. But hey, I'm alive and blessed to be! Enough about me.
Kids are all back at school. Hailey a sophomore, Parker in 8th grade, and Ethan-well, whatever grade you want to call it, I'm not even sure. Ethan is particularly happy to be back in a routine, and when he's happy, we all are! Hailey will be 16 in a few weeks, oh my geez. We have had to break Parker's summer addiction to the playstation, so he will be moody for a few weeks I'm sure. Brian is working as usual, and getting some golf games in. Our schedules seem to be working pretty well so far.
Hailey didn't make the JV Volleyball team, and that brought about a whole lot of tears and teenage girl drama, but we are all good now. Brian and I are firm believers that the world went to shit the minute they stopped keeping score at little league games and everyone was a winner, but man it's hard when you have to break that reality to your kid. Someone was better than you, it sucks, but it's life. Get used to it now and it won't be so hard to accept when you are 25 and have to live in the real world. Lesson we gave her: work hard, stay determined and focused, try out again next year. She picked herself up pretty quick. It may have even been harder for me, because I was in a funk with the "what crap can happen next to us?" mode. Hailey is such a good kid who is far more mature than most other kids her age just because of what our lives have been like for so long, she just deserved it. Or so this Mom thinks!
Some co-workers and friends and I walked the Race for the Cure 5K on the 12th, and I did pretty good. As we walked past the start Carissa dragged me over to the announcer yelling out survivor's years, and when she heard I was a 1 month survivor she made me get up on stage. Not sure I made any sense with the crying I was doing. But man, what a great end to my battle-the walk one month to the day I finished my chemo. Now, I know my battle is not over completely, but as far as I'm concerned I beat this and life only goes forward from here.
That's about all I know for now. We went to Colorado in late July and never wanted to come home, but that's normal when we go out there! Brian and I are planning for our Irish Fest weekend in October with good friends, good food, and great shopping. In the meantime, I'm going to try not to injure myself any more, and enjoy getting a paycheck!
Love and hugs.
Ps-does anyone know how to download pics from my iPad to my blog? I can't figure it out!!
Tuesday, July 24, 2012
Chemo completion celebration!
And yes, I'm all done with chemo. Finally. Friday the 13th was my last treatment, complete with tears, hugs, a certificate and cookies. It doesn't seem possible that this journey started a mere 6ish months ago. Seems like forever, seems like yesterday.
After my treatment, lots of my wonderful supporters joined me for drinks and laughs at All Star Pizza, and we laughed it up til the wee hours of the morning. Many of you from far away sent me mesages you were having a drink in my honor that night, thank you too, I felt your love and toasts! The night wasn't complete without breakfast at IHop with my bestie Carissa! Thank you everyone who joined us in this journey, sending us support and love and prayers. I know I couldn't have gotten through it without the laughs. Thank you to all of you who let me approach this with my warped sense of humor and joined right in. I have said for years of dealing with Ethan ups and downs; if I didn't laugh every day, I'd spend every day crying. Well, this journey wasn't any different, and the laughter sure helped.
Thanks to those Rads who didn't let me put shitty work through-just because I had cancer....
Those of you who told me how I rocked a do-rag....
Those of you who always told me how great I looked, even though I know I didn't...
Those of you who said they were impressed with me coming to work during chemo that I still worked as hard as before I was sick.
I received some of the nicest compliments from people, and I will never forget them, or who said them. And those of you who called me your hero, I really don't feel like one, but thank you.
I'm saving a drunken post for "what NOT to say to people with Cancer" because it seems that even with all the wonderful things people said to me, there were still quite a few people who need some social tips on that.
My last dose of chemo was a doozy, had to have a blood transfusion the day before to ensure my labs were high enough to get my last one and not drag this on any longer. I also got some extra steroids to take after treatment to help with the bone pain, and even with both of those, I had a couple of really bad days when counts were at their lowest. I have been feeling pretty good the last two days, but how hard is it to just rest in beautiful Colorado and let your husband and Aunt do all the cooking for you?? I'm pretty spoiled, and I'm loving it!
We are in Colorado until the end of the month, thoroughly enjoying spending time with the Aunts and cousins and the nicer, cooler weather!! Once back in KC, it's back to work full time for me, and on my new shift-I can't wait!! I will see Dr Sheehan on the 2nd, get my port taken out on the 3rd if my labs are ok, then start Tamoxifen in late August. I will be following up with labwork every three months for the first year. The CA27.29 is the tumor marker they will watch, though it's not completely accurate, it's the best we have for breast cancer recurrence. But my prognosis is 95% cure at 5 years, and I'm pretty pleased with that.
I think I've found my plastic surgeon, and it's a woman! Once back in town, I will be calling to make my consultation appointment. There have been a few weeks of researching reconstruction that I was quite the emotional dishrag and pretty tearful. My scars are hideous, and I try to never look at them. And when looking at surgery options and possibly more scars, I lost it. Once I found this surgeon's bio, and a fellow survivor sent me an email about her personal experience with her, I knew I had found the doctor for me! I'm in no hurry for more surgery, but being done with chemo means moving forward to the next step, and new boobs!
But of course, what would our crazy lives be without a little added drama now that one step is done?? Ethan had his three month Cardiology appointment the day before we left town. Ethan got his EKG and echo, and then we waited for Dr Kaine to come and give us the results, fully expecting to be cut loose again, and maybe even being taken off his Lasix or Digixon. What is usually a thirty minute wait turned into an hour and fifteen minutes. That long a wait is NEVER good news in Cardiology clinic-or any clinic for that matter. Dr Kaine came in and stopped in his tracks. My do-rag threw him for a loop. So you can imagine once I told him what we have already been dealing with this year, how sad he was to tell me that that new pulmonary valve they put in last September is showing mild leakage already. Ahem. I sighed and smiled through my complete and utter shock, and he wiped a big tear from his cheek.
We will watch the leakage, and good news is that since he now truly has a donor valve, it should last a lot longer than his previous transannular patch with leaflet did.
Since that one was supposed to last Ethan "well into his teens", and lasted 5 years, you can imagine my concern about already showing leakage at 10 months post-op. Oh, and Ethan is showing bradycardia, and a sinus arrhythmia on his EKG different from before. The bradycardia we knew about last year, and the arrhythmia appears to be 'an ok new normal for Ethan'. Whew. A new normal. Whatever would we do with just normal?? We did get to stop his Lasix for now, but he has to stay on his Digoxin. Woo-hoo. Did I say something earlier about laughing or I'll cry???
Oh well, a wise person told me things WILL get back to normal eventually, a NEW normal, but normal nonetheless. Nope, same old normal craziness here....
Did I mention my hair is growing back in? I will share a pic soon-it's hysterical looking.
In the meantime stay cool. I will post some pics from Dolls with Balls PINK Bingo we are attending here in Denver on Wednesday night. My cousin is the host, and I can't wait!
Love, hugs and normalcy.
whatever that might be....
Tuesday, July 3, 2012
7 of 8....done!!
Yep, treatment #7 was last Friday, and went well. My youngest sister Kate, and Hailey went with me. They decreased my dose significantly, and I must say, it has helped. I'm usually confined to bed on the Monday following treatment due to bone pain, and can barely make it to the cancer center to get my Neulasta shot. I'm beyond thrilled to report yesterday wasn't bad at all, and I even worked 8 hrs today. The 8 hrs of work damn near did me in, and I'm happily laying in bed with the kiddos right now debating what movie to watch and relishing the thought of all of us sleeping in tomorrow!
So 7 of 8 done, and #3 of 4 Taxol, leaving my last Taxol dose for Friday July 13th. Seriously. What was I thinking??? I know, I was thinking "get this last tx scheduled, done, and over with-the sooner the better!!!". So, party on the 13th-maybe a GNO-Chemo's Done Happy Hour?!?!?
At one point just a couple of weeks ago, I was ready to throw in the towel and be done. I was pretty sure I wouldn't and didn't want to live through another dose of Taxol. Aside from the pain, my abdomen is terribly bloated, and my face is rounder than ever from the steroids, my shingles came back, the fatigue is horrible, and really hard for a person in constant motion like me. I've felt like a terrible wife, mother, friend and co-worker. Oh, and did I mention the early menopause this is throwing me into accompanied by drenching night sweats and hot flashes?? Awesome, they are. Add to that the 100+ degree heat and our bedroom is above the garage, and gets full sun during the afternoon. To put it mildly, I've been kind of a cranky biotch. Who wants her life back.
So this biotch is taking her life back. One moment at a time.
We bought Hailey a car-which she can't drive without one of us for 2 more months, so I am enjoying tooling around in her cute little VW convertible, with the top down and so not having to worry about messing up my hair!! And I've even gotten brave enough to let her drive me on the highway!!
I had a date with Parker on his 13th birthday, and had a delicious lunch at Fuji-his choice!
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| Parker on his birth day! 7/2/1999 |
I got brave and sent food to school with Ethan so his amazing teacher Ms Kristi can work on "tastes" with him. And he LOVES the strawberry fruit strips, hits a switch to ask for MORE, and hasn't had an allergic reaction or aspiration pneumonia!
And Brian and I celebrated our 10th wedding anniversary last week!
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| 14 years ago. love at first sight. |
And those are the moments this biotch is not letting cancer take away from her!
In the meantime, I am going to be researching plastic surgeons for my reconstruction surgery, as I plan to start doing some consultations after the kids start school, and need recommendations-so send me the name of your favorite boob guy! Surgeon that is, not your husband! Board certified is a definite requirement!
Have a safe and Happy 4th of July tomorrow. Thank you to all of those who serve this wonderful country!
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