Pitch Perfect at 2:30 am? I guess! Day after chemo just plain sucks!! I love the month in between but why the day after has to kick my ass so hard is beyond me. Pain, insomnia, anxiety, you name it! So Pitch Perfect it is! I hope this is my one and only complaint this month but it isn't looking that way just yet.....tomorrow I meet with radiation for mapping to hopefully have radiation relieve some of my pain so we could could cut down on my pain meds since insurance is already giving me problems on my current dosage so let alone if we I need an increase. I also will meet with a "sleeve" expert. With the chest wall having some healing issues, my right arm is now experiencing lymphadema which is highly painful causing my arm to look bigger then then other and it is had to touch and caused my hand to tingle. There is no fix besides someone massaging the arm. Any takers? I'll take younext on Monday I will have another lovely thoracestesis as my right lung is almost completely filled again with fluid. So that is all within the next 5 days with most of this needing some down time to recover and doesn't look like that is going to happen. Just a little nerve wracking when chemo enough usually takes me about a week to recover for. So am I scared and anxious? Yes. To speak a little on the radiation, if you remember that was the plan back in July, but then was hospitalized the day before my appointment. They took me anyways for mapping, which is when they align your body and place permanent markers on your body so they radiate the same places every day. At that time they do a dry CT scan to make sure they are not radiating any organs. That was when they found the fluid in my lungs which meant the cancer had moved. The fluid removal trumped radiation and they felt it might alleviate some of the pain. It did not. So radiation is now back on the table. Because chemo and radiation can not overlap too much, it is important I sneak in the radiation within the month I'm off since they want to do 15 rounds. I'm not excited about this at all as this means 15 trips to the hospital, which isn't far, but when you go daily already too much, I just dread it....sitting in a gown, waiting my turn to be zapped, great company by the techs, but being zapped, burnt skin, extra soars... For me to do this, I'm putting a lot of stress into it to say if it does not give any relief, I will be very upset and it will not be a blog I want my grandmas to read
My arm, I have noticed since my chest wall had become either dried out from chemo or wet (sorry I don't know how else to explain it) when it isn't dry, there was a problem. Dr Phillips referred me to the wound center at the hospital and I learned it isn't infected on the outside but could be if we don't get the "yellow" skin off of it. To get that off, after a shower (only every other day -hey they made the rule) I will spray it with a medicated spray and then wipe as much of the yellow looking skin off. Since I don't have much feeling it isn't bad, but when I do hit a nervy spot-OUCH and it makes me want to pass out! So right now out insurance has denied the bandages we need to help heal the wound. I called today to pay for some while everyone argues it out and they are $11 / bandage and I use 3-4 a day! That is fun! So I paid for 30 in hopes by the end of that, we will have the insurance agreeing to the purpose. Either way, this had caused my lymph nodes in the right arm want to help with the drainage but because 19 were removed during surgery, I'm having a real hard time. So I have learned several massages to help the fluid pass to the next set of lymph nodes I think in the lung area. But that may or may not help the swelling that has already been caused in my arm. My right upper arm is hard as a rock and is causing my right fingers to tingle. Such an uncomfortable feeling and very painful. Also I'm not interested in it getting much bigger considering my left arm looks like a tree twig. A twig and a branch aren't that great of a match! Finally Monday, a thoracentesis has been scheduled to drain the fluid. This is the treatment that I have explained in the past being very uncomfortable. Last one they did give me valume and some drugs in my port right before and right after the procedure happened so I tolerated it better then before. So the plan is for me to again let the nurse know what I expect. After the test I will be required to stay in the hospital for 3 hours. Hour one a x-ray to check the lung and for me to sleep off all the drugs. Hour 2 is boring and I think I just ate pudding and stared at Facebook. The third hour a final x-ray to ensure the lung if back to normal and the hopefully home. The rest of the day is a bust as I can't do much. I'm tired and sore. So Wendy will plan to pick up the kids and stay with Ryan while Justin goes to soccer that night. Mom plans to join me for the long day at the hospital with me. This blog post does sound like I'm low on happy information, which I am. I will save a happy post for Tuesday or Wednesday next week when hopefully this is all behind me and I have hopefully a little more energy (although radiation is known to wipe out energy) so let's see. For now I ask that your prayers focus on all tests and procedures to go smoothly. After everything is complete, my focus request is for increased energy and a recharge on my feelings of everything. I'm far from giving up, but I do see myself slipping into that thought that we are doing all of this to prolong my life- which we are, but I need to concentrate and focus on prayers and hope that we find the right one for me. The one that may not seem to be a fix, but for me is THE ONE. Is the AMBER drug that will a make science magazines, will make that nasty doctor I saw while Dr. Phillips was vacation and in the hospital shake his head in disgust at me for not letting him be the one to help me, for Ellen and Good Morning America to call to find out my next plans in life are. Just so much that I'm smiling like it has actually happened. Okay it is now almost 4 am and I should try really hard to sleep through the last couple of hours of this movie. Ryan will be up soon and as much as I say Mommy didn't' sleep, he doesn't seem to care. I don't know why, but he doesn't. Justin….well he gets up in time to eat and head off to school, so a lunch needs made and oh his breakfast too! Happy birthday to my dad this past Wednesday. We may or may not be having a surprised party hosted by Justin in dads basement tonight since Justin only has an half day of school today (Oh wait, no school lunch -Score!), he wanted to decorate the basement and make a cake to surprise Papa. Prayers for my Grandma Freeland who had been in the hospital since Sunday. They are having a hard time regulating her medicine to help her 93 year old body working. It is frustrating for all of her children and for her to try something one day and it work and the next day it doesn't work. So prayers that this is figured out. Also for the siblings of my mom. Including my mom, to travel back and forth to the hospital to be with her to keep her company and help them feel secure that the right decisions are being made. Happy Friday! Love, Amber
Friday, September 19, 2014
Pitch Perfect Anyone?d
Wednesday, September 10, 2014
Hanging In There
Well my friends, it has been awhile and I have had some people reach out to make sure I am okay, which I truly appreciate the concern so I thought it was time to write an update on what is going on over here at the Naughton Plaza.
First on the cancer front, my lung filled with fluid once again and I had to have the horrible procedure that I had in the hospital. It is called a Thoracentesis. See I am broadening my horizon with medical terms-AWESOME! This time around I was more prepared and requested to have as much pain and nerve medicine as possible. They gave me Valume (IS this how it is spelled?) before the procedure and then some pain medicine through my port right before and during the procedure. I don't really remember anything....I was awake during the procedure and then slept for about an hour after. Not sure if that was how it was supposed to work or again if it is my goofy body not doing the right thing and being delayed in falling asleep. Either way, it was much more tolerable so I am thankful for that. After the procedure they do an X-ray right away and then one 3 hours later to ensure that your lung is drained and that the lung has moved back into position. Unfortunately mine decided it wanted to stay cuddled up with the left lung so this meant I had to return the Friday of Labor Day weekend to see if it had moved. If it did not move any, they discussed doing a surgery to manually move it. Wait, what? Surgery? Unplanned? Yeah, I was nervous about this. Not something I had on my schedule that week. So Friday I returned and received good and bad news. Good news was that the right lung moved a little so no need for surgery. However we learned that the lung ALREADY had fluid building up. Not the best news.
Last week I was having some pain on the chest wall. The skin is dry and when I apply the medicine prescribed it gets too moist. It is just a mess and looks like an infection waiting to happen. I called Tuesday after Labor Day and requested to see my Doctor and an appointment was scheduled for Thursday. All was good until Wednesday I woke up with a fever so I contacted my doctor and went in right away. Dr. Phillips examined the skin and did not see infection but thought there was a chance the infection was deeper than what she could see. So she prescribed a drug for infection and then discussed the lung procedure. We decided that doing a lung x-ray every other week would benefit us so we could see if or when a Thoracentesis was required. Dr. Phillips also requested that I see the wound center to have my skin looked at and cleaned up.
On Monday this week I took my first trip to the wound center. I had the best nurse practitioner Andrea. Since most of my skin is numb where they are cleaning, I feel I was a pretty good patient, but at times as she was cleaning my skin, it would hit some nerves and would hurt....YUCK! She did a good job and wants me back on Friday to ensure we are using the right bandaging. (At this time I need to keep the skin covered at all times) Once we know we have the right bandaging she will order and go through my insurance company to have the supplies sent to our home to clean and take care of the skin here and only follow up with her to ensure everything is going okay. Hopefully the skin will clear up fast. The good news was there really wasn't any infection, just need help to make the new skin grow.
So cancer is still lurking around here and maybe that is why I haven't updated. Not that I thought it would go away, but just that this update seems like a lot of appointments and a lot of negativity. I like to write about the bad but then follow with the good! So maybe that was it, or maybe it is just that I am so darn tired that the thought of typing makes me want to go into a coma. Speaking of, I am sleeping a lot. I try to find one thing to concentrate on during the day (thanks to my friend Jill, she has helped with this) Once I complete that I feel like I can take a nap or I can watch some mindless DVR'd shows. I just do not like to lay down all day. That is when I feel really sick, even though I hate to admit, this is really what I want to do. I am so TIRED!!! This is not fun at all and I am drained constantly of my energy. I watch my mom come in with groceries from doing our weekly trips to the store and I want to get sick. I see clean sheets and made beds and I know Wendy has been here to make the beds-Makes me breathless. I want to take back these tasks as sick as that sounds, I just can't right now. I am trying to save my energy for the kids at night to tell them to eat their dinner, stop attacking your brother, don't throw that, let me change your diaper, yes it is bedtime. All of this I still have under control so that feels great! I'm still a mom!
Around the house. Well Justin has started 2nd grade and loves it. He is bringing home perfect spelling tests and worksheets. His spelling and writing is looking better and he is doing more of his favorite this year - Math. So he seems to be one happy camper at school. He has a few kids in his class that were last year so that made the transition easier. He also has joined a soccer league. I don't know that mommy and daddy knew how much time we would spend on this and we are still trying to transition to 2 nights of practice and games on Saturday, Sunday and sometimes Monday. All of which may or may not be played at the school within walking distance from our house. So we will see. He has a pretty good team and enjoys it so we are trying to smile too!
Ryan, oh Ryan. He is 2 1/2. Whew! So he is busy as can be and asks why constantly. And I don't always know why! He goes to daycare on Monday and Tuesday and then is with my mom on Wednesday and Friday and with Wendy on Thursday. He is doing gymnastics with Wendy and a signing and ABC class with my mom. One of the days he is with my mom, I am going to try to attend the play date so I get more time with him, but our one on one time is limited because he doesn't stop moving and that isn't fair to him that Mommy needs to rest more than just 1 nap a day that he is trying so hard to get out of daily.
So all is well here in the Naughton house hold. It has been fun to have mom and dad 30 minutes away too. Even more fun to say "see you tomorrow" instead of "see you soon". Mom attends a lot of my appointments so Don doesn't have to miss work. I don't know if she could find that part time job right now dad because I'm keeping her pretty busy over here! She likes to be involved so she can fully understand what is going on and she is enjoying time with Ryan for now 2 days a week, which she knows she is not locked into-Why Ryan asks-because you are a wild man and day care has so graciously agreed to take you should mom decide it is too much. For now Wendy and mom know their roles and when and where they need to be somewhere. It is great that we have it all together and things are running smoothly. But we do appreciate your concern and your gracious offers to help with the kids and still know who you are so don't run too far, you just never know when we get in a bind.
I will try to update more often and I do appreciate your concern when I don't update. But I'm still working hard to get better and if I can't get better, I'm working hard to ensure I don't get worse.
Don't forget that if you live near and don't have plans on Sunday, October 5th, come join Amber's Prayer Warriors at the Making Strides Against Breast Cancer walk. $25 to register and kids are welcome!! Hope to see you there!
Love,
Amber
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First on the cancer front, my lung filled with fluid once again and I had to have the horrible procedure that I had in the hospital. It is called a Thoracentesis. See I am broadening my horizon with medical terms-AWESOME! This time around I was more prepared and requested to have as much pain and nerve medicine as possible. They gave me Valume (IS this how it is spelled?) before the procedure and then some pain medicine through my port right before and during the procedure. I don't really remember anything....I was awake during the procedure and then slept for about an hour after. Not sure if that was how it was supposed to work or again if it is my goofy body not doing the right thing and being delayed in falling asleep. Either way, it was much more tolerable so I am thankful for that. After the procedure they do an X-ray right away and then one 3 hours later to ensure that your lung is drained and that the lung has moved back into position. Unfortunately mine decided it wanted to stay cuddled up with the left lung so this meant I had to return the Friday of Labor Day weekend to see if it had moved. If it did not move any, they discussed doing a surgery to manually move it. Wait, what? Surgery? Unplanned? Yeah, I was nervous about this. Not something I had on my schedule that week. So Friday I returned and received good and bad news. Good news was that the right lung moved a little so no need for surgery. However we learned that the lung ALREADY had fluid building up. Not the best news.
Last week I was having some pain on the chest wall. The skin is dry and when I apply the medicine prescribed it gets too moist. It is just a mess and looks like an infection waiting to happen. I called Tuesday after Labor Day and requested to see my Doctor and an appointment was scheduled for Thursday. All was good until Wednesday I woke up with a fever so I contacted my doctor and went in right away. Dr. Phillips examined the skin and did not see infection but thought there was a chance the infection was deeper than what she could see. So she prescribed a drug for infection and then discussed the lung procedure. We decided that doing a lung x-ray every other week would benefit us so we could see if or when a Thoracentesis was required. Dr. Phillips also requested that I see the wound center to have my skin looked at and cleaned up.
On Monday this week I took my first trip to the wound center. I had the best nurse practitioner Andrea. Since most of my skin is numb where they are cleaning, I feel I was a pretty good patient, but at times as she was cleaning my skin, it would hit some nerves and would hurt....YUCK! She did a good job and wants me back on Friday to ensure we are using the right bandaging. (At this time I need to keep the skin covered at all times) Once we know we have the right bandaging she will order and go through my insurance company to have the supplies sent to our home to clean and take care of the skin here and only follow up with her to ensure everything is going okay. Hopefully the skin will clear up fast. The good news was there really wasn't any infection, just need help to make the new skin grow.
So cancer is still lurking around here and maybe that is why I haven't updated. Not that I thought it would go away, but just that this update seems like a lot of appointments and a lot of negativity. I like to write about the bad but then follow with the good! So maybe that was it, or maybe it is just that I am so darn tired that the thought of typing makes me want to go into a coma. Speaking of, I am sleeping a lot. I try to find one thing to concentrate on during the day (thanks to my friend Jill, she has helped with this) Once I complete that I feel like I can take a nap or I can watch some mindless DVR'd shows. I just do not like to lay down all day. That is when I feel really sick, even though I hate to admit, this is really what I want to do. I am so TIRED!!! This is not fun at all and I am drained constantly of my energy. I watch my mom come in with groceries from doing our weekly trips to the store and I want to get sick. I see clean sheets and made beds and I know Wendy has been here to make the beds-Makes me breathless. I want to take back these tasks as sick as that sounds, I just can't right now. I am trying to save my energy for the kids at night to tell them to eat their dinner, stop attacking your brother, don't throw that, let me change your diaper, yes it is bedtime. All of this I still have under control so that feels great! I'm still a mom!
Around the house. Well Justin has started 2nd grade and loves it. He is bringing home perfect spelling tests and worksheets. His spelling and writing is looking better and he is doing more of his favorite this year - Math. So he seems to be one happy camper at school. He has a few kids in his class that were last year so that made the transition easier. He also has joined a soccer league. I don't know that mommy and daddy knew how much time we would spend on this and we are still trying to transition to 2 nights of practice and games on Saturday, Sunday and sometimes Monday. All of which may or may not be played at the school within walking distance from our house. So we will see. He has a pretty good team and enjoys it so we are trying to smile too!
Ryan, oh Ryan. He is 2 1/2. Whew! So he is busy as can be and asks why constantly. And I don't always know why! He goes to daycare on Monday and Tuesday and then is with my mom on Wednesday and Friday and with Wendy on Thursday. He is doing gymnastics with Wendy and a signing and ABC class with my mom. One of the days he is with my mom, I am going to try to attend the play date so I get more time with him, but our one on one time is limited because he doesn't stop moving and that isn't fair to him that Mommy needs to rest more than just 1 nap a day that he is trying so hard to get out of daily.
So all is well here in the Naughton house hold. It has been fun to have mom and dad 30 minutes away too. Even more fun to say "see you tomorrow" instead of "see you soon". Mom attends a lot of my appointments so Don doesn't have to miss work. I don't know if she could find that part time job right now dad because I'm keeping her pretty busy over here! She likes to be involved so she can fully understand what is going on and she is enjoying time with Ryan for now 2 days a week, which she knows she is not locked into-Why Ryan asks-because you are a wild man and day care has so graciously agreed to take you should mom decide it is too much. For now Wendy and mom know their roles and when and where they need to be somewhere. It is great that we have it all together and things are running smoothly. But we do appreciate your concern and your gracious offers to help with the kids and still know who you are so don't run too far, you just never know when we get in a bind.
I will try to update more often and I do appreciate your concern when I don't update. But I'm still working hard to get better and if I can't get better, I'm working hard to ensure I don't get worse.
Don't forget that if you live near and don't have plans on Sunday, October 5th, come join Amber's Prayer Warriors at the Making Strides Against Breast Cancer walk. $25 to register and kids are welcome!! Hope to see you there!
Love,
Amber
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