It is 6:30 am. F:rank and I get ready for work. Zack meets me at the entrance to living room, dressed and ready to take me to work (we share my car until his truck is ready to drive). I'm surprised! This is the kid that loves to sleep in, he doesn't like it when he has to wake up early (what kid does), and yet he is ready before I am. He takes me in to work and tells me he is going to Asheville to see about the open wound and depending on what they do, he wants to hang out with his friends after.
He is trying to get as much fun in as possible with his friends before his first treatment on Tuesday. We can be told of all the possible side effects, what to expect, what to do or not to do, but until we are there, it is all a mystery.
The day at work continues with so much positive energy and talk. Everyone is asking about Zack and how we all are. the words flow out of my mouth so easily "all of the cancer is gone!!!, he still has to have chemo, but we are so far ahead of the game". I'm reminded of the time Mom and I would do shows to sell our father Christmas figures. Mom would tease me and say I was "singing" the phrase when talking about them..."they are one of a kind, hand made, signed and numbered". I would say it so many times, it was imbedded in my brain. This now is too!! As I say it over and over again, I FEEL what I am actually saying and begin to get goosebumps each time I share the news. It's like an energy came over me and I KNEW that everything was going to be alright, it IS alright.
Zack calls from Asheville. He has been running around for hours, from one doctor to the other, only to find out that the incision is fine and he just needs to keep it clean. Seriously? He is frustrated and says "I wasted three hours for this?" He is a relieved though and says that he wasn't looking forward to more stitches. I tease him and say "see, even the doctors are telling you to take a shower", "NOT funny Mom".
It is mid afternoon, I get an email from one of my old "Boy Scout" friends. She is asking for our address to send us an invitation to her sons Eagle Scout Celebration. WOW!!!! Life does go on.( Zack had decided last year that Scouts was no longer for him and after trying to convince him for a year to stay with it, we decided not to force him. This is supposed to be HIS journey, not ours and we can guide him, but forcing him just isn't fair. ) I realize this email is a "trigger" for me. Kids are preparing to go back to school, to return to Scouts, normal every day stuff, as we are preparing for a whole new way of learning ( Homebound and on line courses) and living. I remember going to the store for groceries last week and seeing all the school supplies with parents and kids picking out their backpacks. I was sad that we won't have that experience just one more year. I turn my thinking around and say "good, one less backpack to buy", but I'm not really convinced. I email my friend "we won't be able to attend, Zack has chemo starting next week", sorry too tired to go into details, all info is on my blog.. and then I realize... What the hell did you just do, THAT'S how you tell someone? Today, all tact is gone, my energy is depleting with this subject and today, I just wanted to be a "normal mother".
Nancy and I have a couple of moments, we laugh and we cry together. We question why, but don't have any answers. Maybe we will "see" the answers later on, but for now, we are doing the best we can. She wishes she could make all of our pain go away, she is very protective of me, but I know we are to learn from this and come out better, stronger people. I think about Mom's message to me, "don't try and be Mother Teresa, even SHE wasn't a saint all the time and would get mad". I store that in the back of my mind for future reference.
I make it home from work, Zack runs in the house and gives me a big hug and kiss and runs out the door to spend the night at his friends house. He is in good spirits and is ready for the next day. Frank is settled in on the couch watching his favorite British show about cars and I sit down to blog and "release". Never in my 52 years would I ever believe anyone if they told me I would write a "journal" and yet this has been my saving grace. I am blessed to have this venue and continued Love and support from so many people. Yes, Life does go on, even for us...
Thursday, July 26, 2012
Wednesday, July 25, 2012
Death of the dancing flower...
Today started out more or less a normal day. Frank and I went to work. Zack came and got my car to run around and do errands for us and just hang out with his friend. The love and support that I feel when at work is amazing. Many of our patients know about our new journey and offer nothing but positive reinforcement. (I won't allow any negative talk, and have no problems stopping someone should they head in that direction, which hasn't happened.) With the news of no cancer, it is so much easier to stay positive. We are still nervous about what what lies ahead, but somehow feel a little more in control (and we KNOW how I like to be in control!).
I was more "present" at work than I have been all month. I was able to focus better and didn't feel like a zombie trying to find her next meal (okay, too many zombie movies). The energy in the office was calm and everything flowed. The closer it was time to head home the more anxious I became. It hit me! I don't have to REALLY think about any of this when at work. I stay busy and put on a big smile and "pretend" everything is normal. It is 4:30 pm and I start to whimper inside, I don't want anyone to see that I'm about to loose it, again, for the billionth time. I can hold on just a little longer. If I can just make it to 5:30 I can let go.
It is 5:30, the office is closed and nothing! Not a single tear! What the hell? You were waiting for this? Where are the water works? Not even a drop? Well, going through this plus menopause at the same time I realize I'm entitled to change my moods as often as I want. So... no tears, I am again feeling the gratitude, I feel so blessed that my child does not have a tumor anymore, doesn't have to fight for his life like so many other children out there with sarcoma. Maybe I don't need to cry as much, maybe I don't have that many tears left right now.
Zack picks me up, I put a fresh basket of tomatoes on the floor in the back seat, right on my little dancing flower. I pick it up and hand it to Zack to place back on my dashboard, the flower is broken, ( I BROKE IT!!!) I loose it!! How can you put that on the floor, now it's broken. Why can't you leave my stuff alone and treat it with respect. I am yelling and he is getting angry at himself, all of this over a stupid dancing flower. I realize that instead of tears the anger is there. But I can't get mad at him, what kind of a mother am I? How dare I yell at my child, he is going to start chemo next week. We don't speak on the five minute drive home. We arrive home, both storm in the door, Frank and Sidi (our shitzhu) stand there ready to greet us and quickly run to the hills for safety. Zack slams his bedroom door while I sit at the table and tell Frank the horrors of my broken dancing flower. Frank looks at me calmly and says, "you need to do what you tell me to do". Okay, I tell you to do a lot of stuff? Which one are you talking about? ( I can dish it, but can't take it ) He says " you need to let it go, it's okay that you got mad, he needs to learn to respect other peoples things and if it wasn't on the floor it wouldn't have been broken". "We still have to teach him right from wrong, this doesn't change how we have to raise him". "We can support him, but can't coddle him, he doesn't need that and doesn't want that."
I get it! I go to Zack's room, sit on his bed and just chill. That's usually a good way to get him to start opening up. I just sit ,shut up and let him start the conversation. He apologizes for the flower, I tell him it's just a stupid $7.00 flower that I had no business buying. He says "no, you liked it a lot and I wasn't respectful enough to put it in a safe place", we both knew it wasn't really about the flower. He is texting on and off, I ask him what's going on with his friends. He says they are all freaking out. He explains that they are all texting him and saying they want to make things for him, are praying and thinking about him. He tells me he doesn't want to get the attention, he doesn't want anything from anyone. I try and explain that his friends are trying to deal with this. It is scary to adults, so it must be twice as scary for kids. They are doing the only thing they know to do. They want to support you and be there for you, but they aren't sure what to do or what to say. If someone wants to do something for you, you must let them. This may help them in dealing with the situation. He starts to tear up and tries to hide his face. I tell him, it's okay to cry, it's okay to be confused about this. I'M confused and I'm not the one having the treatment. He opens up about how pissed he is and how he doesn't want to be different or bald. I tell him to picture himself in a year, when it is all done and his hair is growing back. He said I will be bald and skinny. I can handle the skinny ( at 6'5" and 330 lbs now, he welcomes some weight loss, but not this way) but what if my hair grows back red or blonde. I want to be brown like I am now!! We start to laugh, I tell him he would look just like his cousin Darrick. He says, "HE looks good with red hair, can you imagine ME... a redhead?" He reminds me of the doctor saying that some people's hair comes back curly and different colors. (Thanks Doc!!!) We are finally able to start laughing again. Frank comes in and Zack tells him it's all under control!! NOW let's eat some pizza.
I am now too tired to fool with eating it is 8 pm and I still have to get my papers ready for tomorrows meeting with the insurance agent. I spread out the papers on the bed and start to organize when Zack comes in with a panicked look on his face. "Mom, my leg doesn't look good!" He shows me the incision where the lymph nodes had been removed last Thursday. The cut is open, the wound has torn about an inch. He is more worried that his leg looks yellow and I remind him that is from the antiseptic they use to cleanse the area before surgery. I call Frank in (who is less squeamish than me), "yup, it tore open", I immediately call the doctor at the Center. (Our new instructions are to call right away if ANYTHING doesn't "feel" right). Dr. S is on call, we had already met him twice before and he also did the bone marrow biopsy. He tells me to clean it and make sure it is not bleeding, which it is not, he said clear coming from it is part of the healing, that is normal, but he may need a couple of stitches or a butterfly bandage on it. He assures me it will be okay until tomorrow morning. Frank is cleaning it and putting a bandage on it, when I freak and call the doctor again, are you sure we don't need to do anything tonight? Both Zack and Frank in sync are telling me to chill !! It can wait until tomorrow. The Doctor laughs when he hears them and assures me again, it will be okay. Without asking, Zack calls his friend and says " I need you to ride with me to the Center tomorrow. I may need stitches and I need a driver in case I can't make it back myself", "yeah man, my parents have to work and we can do this without them!" "Cool, see ya at 9". Who is this person? My "little boy" is a young man. I realize he is going to be just fine, he wants to do this on his own and we must let him. We are here when he needs us, but we must let him be strong on his own too.
I eat a bowl of cereal, pull the covers over myself and chill. We made it through another day.
I was more "present" at work than I have been all month. I was able to focus better and didn't feel like a zombie trying to find her next meal (okay, too many zombie movies). The energy in the office was calm and everything flowed. The closer it was time to head home the more anxious I became. It hit me! I don't have to REALLY think about any of this when at work. I stay busy and put on a big smile and "pretend" everything is normal. It is 4:30 pm and I start to whimper inside, I don't want anyone to see that I'm about to loose it, again, for the billionth time. I can hold on just a little longer. If I can just make it to 5:30 I can let go.
It is 5:30, the office is closed and nothing! Not a single tear! What the hell? You were waiting for this? Where are the water works? Not even a drop? Well, going through this plus menopause at the same time I realize I'm entitled to change my moods as often as I want. So... no tears, I am again feeling the gratitude, I feel so blessed that my child does not have a tumor anymore, doesn't have to fight for his life like so many other children out there with sarcoma. Maybe I don't need to cry as much, maybe I don't have that many tears left right now.
Zack picks me up, I put a fresh basket of tomatoes on the floor in the back seat, right on my little dancing flower. I pick it up and hand it to Zack to place back on my dashboard, the flower is broken, ( I BROKE IT!!!) I loose it!! How can you put that on the floor, now it's broken. Why can't you leave my stuff alone and treat it with respect. I am yelling and he is getting angry at himself, all of this over a stupid dancing flower. I realize that instead of tears the anger is there. But I can't get mad at him, what kind of a mother am I? How dare I yell at my child, he is going to start chemo next week. We don't speak on the five minute drive home. We arrive home, both storm in the door, Frank and Sidi (our shitzhu) stand there ready to greet us and quickly run to the hills for safety. Zack slams his bedroom door while I sit at the table and tell Frank the horrors of my broken dancing flower. Frank looks at me calmly and says, "you need to do what you tell me to do". Okay, I tell you to do a lot of stuff? Which one are you talking about? ( I can dish it, but can't take it ) He says " you need to let it go, it's okay that you got mad, he needs to learn to respect other peoples things and if it wasn't on the floor it wouldn't have been broken". "We still have to teach him right from wrong, this doesn't change how we have to raise him". "We can support him, but can't coddle him, he doesn't need that and doesn't want that."
I get it! I go to Zack's room, sit on his bed and just chill. That's usually a good way to get him to start opening up. I just sit ,shut up and let him start the conversation. He apologizes for the flower, I tell him it's just a stupid $7.00 flower that I had no business buying. He says "no, you liked it a lot and I wasn't respectful enough to put it in a safe place", we both knew it wasn't really about the flower. He is texting on and off, I ask him what's going on with his friends. He says they are all freaking out. He explains that they are all texting him and saying they want to make things for him, are praying and thinking about him. He tells me he doesn't want to get the attention, he doesn't want anything from anyone. I try and explain that his friends are trying to deal with this. It is scary to adults, so it must be twice as scary for kids. They are doing the only thing they know to do. They want to support you and be there for you, but they aren't sure what to do or what to say. If someone wants to do something for you, you must let them. This may help them in dealing with the situation. He starts to tear up and tries to hide his face. I tell him, it's okay to cry, it's okay to be confused about this. I'M confused and I'm not the one having the treatment. He opens up about how pissed he is and how he doesn't want to be different or bald. I tell him to picture himself in a year, when it is all done and his hair is growing back. He said I will be bald and skinny. I can handle the skinny ( at 6'5" and 330 lbs now, he welcomes some weight loss, but not this way) but what if my hair grows back red or blonde. I want to be brown like I am now!! We start to laugh, I tell him he would look just like his cousin Darrick. He says, "HE looks good with red hair, can you imagine ME... a redhead?" He reminds me of the doctor saying that some people's hair comes back curly and different colors. (Thanks Doc!!!) We are finally able to start laughing again. Frank comes in and Zack tells him it's all under control!! NOW let's eat some pizza.
I am now too tired to fool with eating it is 8 pm and I still have to get my papers ready for tomorrows meeting with the insurance agent. I spread out the papers on the bed and start to organize when Zack comes in with a panicked look on his face. "Mom, my leg doesn't look good!" He shows me the incision where the lymph nodes had been removed last Thursday. The cut is open, the wound has torn about an inch. He is more worried that his leg looks yellow and I remind him that is from the antiseptic they use to cleanse the area before surgery. I call Frank in (who is less squeamish than me), "yup, it tore open", I immediately call the doctor at the Center. (Our new instructions are to call right away if ANYTHING doesn't "feel" right). Dr. S is on call, we had already met him twice before and he also did the bone marrow biopsy. He tells me to clean it and make sure it is not bleeding, which it is not, he said clear coming from it is part of the healing, that is normal, but he may need a couple of stitches or a butterfly bandage on it. He assures me it will be okay until tomorrow morning. Frank is cleaning it and putting a bandage on it, when I freak and call the doctor again, are you sure we don't need to do anything tonight? Both Zack and Frank in sync are telling me to chill !! It can wait until tomorrow. The Doctor laughs when he hears them and assures me again, it will be okay. Without asking, Zack calls his friend and says " I need you to ride with me to the Center tomorrow. I may need stitches and I need a driver in case I can't make it back myself", "yeah man, my parents have to work and we can do this without them!" "Cool, see ya at 9". Who is this person? My "little boy" is a young man. I realize he is going to be just fine, he wants to do this on his own and we must let him. We are here when he needs us, but we must let him be strong on his own too.
I eat a bowl of cereal, pull the covers over myself and chill. We made it through another day.
Tuesday, July 24, 2012
Our new "Normal"
The GREAT news is NO CANCER!!! NOT ANYWHERE!!! ALL the tests results are back and it is all gone!!
The rough news is, Zack still must have chemotherapy for a year. With Ewing Sarcoma, the statistics show the there is a 100% chance of it returning without treatment and an 85% chance of it NOT returning with the treatment. As parents, we know we will have to make decisions that could affect our child's life forever, you never think you will have to make one THIS big! We not only have to do our best to make sure this doesn't return, but have to know about what lies ahead. It is a scary journey, all the percentages that are thrown our way, all the details of the possible side effects, the loosing of the hair, the new protection we must provide to ensure he doesn't get sick, today is another overwhelming visit.
This time, we know we must absorb only what is important. The rest will come in time, we will soon be pro's, walking the halls of the clinic and hospital, knowing where everything is, bathrooms, cafeteria, snacks. We will know what to bring with us for the long days, whom will be working, what Doctor we see today. Soon it will all become routine, but for today... THIS SUCKS!!! It sucks that our very healthy, handsome young man of 16 has to deal with loosing his hair, (which at this point bothers him the most and can occur in the first couple of weeks after first treatment), he has to be aware of his friends health, if they are sick they can't come around, there are so many things we need to be aware of and somehow, day by day we must trust that we have made the right decision.
Now on to technical:
In house cocktail will be : Vincristine (Oncovin), Doxorubicin (Adreamycin), Cyclophosphamide (Cytoxan) Ondansetron and Zofran to keep the nauseau down.
The Hospital cocktail will be: Mesna (Mesnex), Etoposide (VP-16, VePesid), Ifosfamide (Lfex)
I won't mention side effects as I believe that what you put out into the Universe can actually happen, so we will know that he will have the least amount of side effects.
The protocol will be as follows:
Zack will be an outpatient and receive his "cocktail" on Tuesdays at the Cancer Center near Mission in Asheville, NC. This will be an all day visit. They have a chair that massages, heats up, reclines. They have cable TV, and a couch that Mama and Dad can chill on. He will then return on Wednesday morning for follow up visit,to flush out his system, no "cocktail" on those days. This will happen two weeks in a row.
On the Third week he will enter the hospital for five days of treatments. They give a stronger cocktail, so they administer it slowly into the system and monitor him closely. He will be at Mission in the pediatric unit. He will have his own room and will be able to have visitors to keep him company, (as long as they are not sick).
On the fourth week, he is "off", then it loops around again. Basically he will have a total of 11 days a month of treatment (that is if I'm looking at this chart correctly, at this point I'm overwhelmed so don't quote me on numbers.. those of you who know me, know all too well my history with numbers. This will continue for 238 days starting with the first day!
This will all be over in 238 days! We can do this! HE can do this! With prayers, lots of love and support I know He can do this!! and we have everything in spades!!
The rough news is, Zack still must have chemotherapy for a year. With Ewing Sarcoma, the statistics show the there is a 100% chance of it returning without treatment and an 85% chance of it NOT returning with the treatment. As parents, we know we will have to make decisions that could affect our child's life forever, you never think you will have to make one THIS big! We not only have to do our best to make sure this doesn't return, but have to know about what lies ahead. It is a scary journey, all the percentages that are thrown our way, all the details of the possible side effects, the loosing of the hair, the new protection we must provide to ensure he doesn't get sick, today is another overwhelming visit.
This time, we know we must absorb only what is important. The rest will come in time, we will soon be pro's, walking the halls of the clinic and hospital, knowing where everything is, bathrooms, cafeteria, snacks. We will know what to bring with us for the long days, whom will be working, what Doctor we see today. Soon it will all become routine, but for today... THIS SUCKS!!! It sucks that our very healthy, handsome young man of 16 has to deal with loosing his hair, (which at this point bothers him the most and can occur in the first couple of weeks after first treatment), he has to be aware of his friends health, if they are sick they can't come around, there are so many things we need to be aware of and somehow, day by day we must trust that we have made the right decision.
Now on to technical:
In house cocktail will be : Vincristine (Oncovin), Doxorubicin (Adreamycin), Cyclophosphamide (Cytoxan) Ondansetron and Zofran to keep the nauseau down.
The Hospital cocktail will be: Mesna (Mesnex), Etoposide (VP-16, VePesid), Ifosfamide (Lfex)
I won't mention side effects as I believe that what you put out into the Universe can actually happen, so we will know that he will have the least amount of side effects.
The protocol will be as follows:
Zack will be an outpatient and receive his "cocktail" on Tuesdays at the Cancer Center near Mission in Asheville, NC. This will be an all day visit. They have a chair that massages, heats up, reclines. They have cable TV, and a couch that Mama and Dad can chill on. He will then return on Wednesday morning for follow up visit,to flush out his system, no "cocktail" on those days. This will happen two weeks in a row.
On the Third week he will enter the hospital for five days of treatments. They give a stronger cocktail, so they administer it slowly into the system and monitor him closely. He will be at Mission in the pediatric unit. He will have his own room and will be able to have visitors to keep him company, (as long as they are not sick).
On the fourth week, he is "off", then it loops around again. Basically he will have a total of 11 days a month of treatment (that is if I'm looking at this chart correctly, at this point I'm overwhelmed so don't quote me on numbers.. those of you who know me, know all too well my history with numbers. This will continue for 238 days starting with the first day!
This will all be over in 238 days! We can do this! HE can do this! With prayers, lots of love and support I know He can do this!! and we have everything in spades!!
Monday, July 23, 2012
Now where did I put that?
Made it to work for half a day today. It was nice going in and doing the "normal" thing. Opening the office, greeting all the patients. Many already know about Zack and are offering their prayers, and personal survival stories. One woman's son 40 years old has been in remission for one year from testicular cancer, another survived breast cancer, the word seems to surround us. But, it's kind of like when your'e pregnant, all of a sudden everyone around you is too. It has always been, just are noticing it now. I lay my glasses down next to the x-ray machine, it takes me 20 minutes to re-locate them, My phone is "hiding" behind my coffee cup, I am staring right at it and yet can't find it, "oh there it is", like it jumped to hide from me.
I pick Zack up at 2 pm and we again head 45 minutes away to Asheville. This time for his EKG and Echo Cardiogram. We walk into the lower level, and the lady tells us "oh, you need to be in the pediatric section upstairs", I can already tell Zack is not thrilled! We go up a very noisy elevator, which prompts us to take the stairs down later, walk into the office and there it is... children drawing on chalk boards, running around playing with the toys. The walls are decorated with flowers, trucks and cars and bugs. I fill out the paperwork with the receptionist and she then calls Zack over to have his picture taken with the computer camera. HE has to hold it up because the woman is to short to do so herself. We all laugh, at 6'5" it's not easy to find someone that can hold anything up to him. We enter the long hallway, more flowers... and a nurse not more than 5'2" looks up at him, looks at her papers and says I thought you were 18? Zack says, "yea, I get that alot". She weighs him and then attempts to take his height. I step in and push the lever up to the top of Zack's head.
We are escorted into a room with machines. The first nurse comes in places all these magnets on his chest, hooks up miniature clamps and runs her tests for the EKG. A second comes in with her ultra sound equipment, looks at Zack and says "you were here when you were four weeks old weren't you", we say "no", she says "oh there must be another Zack Fisher".... (OK, Frank thought he was being original when he picked out the name back when he was 13, but by the time we actually HAD a child, it was more common, there is another Zack Fisher in our small town of Brevard that graduated last year). I sit in the corner ready to fall asleep. Even though I slept well last night (Zack's pain is finally tolerable), I guess I'm not catching up. The nurse starts the ultrasound, we see the heart pumping (or at least I think that's what it was, it looked more like a ghost from a scary movie coming out of the screen). She takes all her "pictures" and says everything looks really good ( of course we are not there because of his heart, thank God), she moves down to his stomach area, I look at her and tell her "if there is a baby in there, I DON'T want to know!!"" I can only handle on shock at a time, and this month's quota has been filled", Always with the humor, I don't know how I would survive without my smart mouth! We finish and decide to eat out, who has the energy to cook, we will bring Frank a dinner as well, everyone will be happy. I use the rest room, come out, we go downstairs, "oh, were is the umbrella?", Zack runs back upstairs, I had left it in the rest room, While he is coming downstairs, I realize that I can't find my phone again, so I run past him upstairs and there it is in the bathroom right next to where my purse had been. This is also me lately. I remember Mom thinking she was loosing her mind when she cared for Dad who had Alzheimers. Our brains can only handle so much during times of stress and we can't stress about that too much, but I would still like to know where my keys are.
We eat dinner, drive home and present Frank with his gourmet pork chops in Styrofoam with plastic forks and cold rolls. I'm so tired I could have eaten dog food and it would have tasted good. Zack is now in his room, making a date with a young lady for Wednesday, I am here typing in my blog and will then go chill in bed until I can't keep my eyes open anymore (too late) and Frank will eat dinner and sit on porch reading the same book he has read 100 times before. We all have our own ways of coping, for right now in this moment, until tomorrow when we know the results of the FINAL testing before Chemo starts. The meeting starts at 8 am, again in Asheville, 45 minutes away ( right now this minute it feels like 1000 miles). Tomorrow we will have the schedule for the treatments, tomorrow we will know what out "new normal" is. Today, we simply are!
I pick Zack up at 2 pm and we again head 45 minutes away to Asheville. This time for his EKG and Echo Cardiogram. We walk into the lower level, and the lady tells us "oh, you need to be in the pediatric section upstairs", I can already tell Zack is not thrilled! We go up a very noisy elevator, which prompts us to take the stairs down later, walk into the office and there it is... children drawing on chalk boards, running around playing with the toys. The walls are decorated with flowers, trucks and cars and bugs. I fill out the paperwork with the receptionist and she then calls Zack over to have his picture taken with the computer camera. HE has to hold it up because the woman is to short to do so herself. We all laugh, at 6'5" it's not easy to find someone that can hold anything up to him. We enter the long hallway, more flowers... and a nurse not more than 5'2" looks up at him, looks at her papers and says I thought you were 18? Zack says, "yea, I get that alot". She weighs him and then attempts to take his height. I step in and push the lever up to the top of Zack's head.
We are escorted into a room with machines. The first nurse comes in places all these magnets on his chest, hooks up miniature clamps and runs her tests for the EKG. A second comes in with her ultra sound equipment, looks at Zack and says "you were here when you were four weeks old weren't you", we say "no", she says "oh there must be another Zack Fisher".... (OK, Frank thought he was being original when he picked out the name back when he was 13, but by the time we actually HAD a child, it was more common, there is another Zack Fisher in our small town of Brevard that graduated last year). I sit in the corner ready to fall asleep. Even though I slept well last night (Zack's pain is finally tolerable), I guess I'm not catching up. The nurse starts the ultrasound, we see the heart pumping (or at least I think that's what it was, it looked more like a ghost from a scary movie coming out of the screen). She takes all her "pictures" and says everything looks really good ( of course we are not there because of his heart, thank God), she moves down to his stomach area, I look at her and tell her "if there is a baby in there, I DON'T want to know!!"" I can only handle on shock at a time, and this month's quota has been filled", Always with the humor, I don't know how I would survive without my smart mouth! We finish and decide to eat out, who has the energy to cook, we will bring Frank a dinner as well, everyone will be happy. I use the rest room, come out, we go downstairs, "oh, were is the umbrella?", Zack runs back upstairs, I had left it in the rest room, While he is coming downstairs, I realize that I can't find my phone again, so I run past him upstairs and there it is in the bathroom right next to where my purse had been. This is also me lately. I remember Mom thinking she was loosing her mind when she cared for Dad who had Alzheimers. Our brains can only handle so much during times of stress and we can't stress about that too much, but I would still like to know where my keys are.
We eat dinner, drive home and present Frank with his gourmet pork chops in Styrofoam with plastic forks and cold rolls. I'm so tired I could have eaten dog food and it would have tasted good. Zack is now in his room, making a date with a young lady for Wednesday, I am here typing in my blog and will then go chill in bed until I can't keep my eyes open anymore (too late) and Frank will eat dinner and sit on porch reading the same book he has read 100 times before. We all have our own ways of coping, for right now in this moment, until tomorrow when we know the results of the FINAL testing before Chemo starts. The meeting starts at 8 am, again in Asheville, 45 minutes away ( right now this minute it feels like 1000 miles). Tomorrow we will have the schedule for the treatments, tomorrow we will know what out "new normal" is. Today, we simply are!
Sunday, July 22, 2012
Just a couple more days..
That's what we tell Zack. Just a couple more days and the pain will go away. Again, a rough night. Up most of the night trying to convince Zack that it's OK to take a Tylenol, or even the one with codeine that the surgeon prescribed. But he won't have any of it. FINALLY it comes out. "I won't take anything and have the same thing that is happening all over the world." It hits me! He is worried of mixing medicine. He knows first hand about people that have passed just from taking over the counter with prescription medications and there being a reaction. It happens all the time. How many celebrities have died by doing just the same thing? The Buncome County coroner told me ( he was my Doctor when I went to the Bariatric Clinic.. I know kind of freaky) that NC has the highest mortality rate from people taking over the counter antihistamine with prescription drugs. He said because allergies are so high in NC, more people are taking the medicine. He has heard me talk about that. Knowledge is power, but to a 16 year old? Their imagination can run wild. I explain to him that We would not let him take anything if we didn't know it is safe. He is afraid and tells me to leave him alone. He is fine! I'm not going to force him to take it, so I tell him to leave his door open and I am right across the hall.
I wake up when I hear the refrigerator door open, when the bathroom door closes, then he closes his door. It is 3 am and I go to make sure he is OK. He says "as long as I don't move", so jokingly I tell him "don't move". I get a little laugh and he says MOM STOP WORRYING I'M OK!!! GO TO BED!!! I realize he is right, there is nothing I can do, I can't FIX this!!! and I HATE IT!!!!
We all wake up around 8:00. Zack is on the couch watching his favorite automotive shows. Frank is working around the house to clean things up in the yard. He tells me to go with Mom, he will be home. Zack tells me he is feeling better, We have decided that it is better for him to lay on the couch to let the one incision heal. It is in a very uncomfortable place and by sitting makes it hurt more. So.. he has set it all up, MP3 player, cell phone, remote... He has fixed his little corner of the world for the day.
I throw in a couple of loads of laundry, empty the dishwasher, re load the dishwasher and get ready to head out. I worry so about him, I worry so about Mom. She has not sounded good at all since receiving all the news. Am I telling her too much? Am I leaning on her too much? Am I yelling at her too much when she tells me her fears and I EXPECT her to be strong? I think after everything she has been through in her 80 years, she deserves to feel whatever the hell she wants to feel, she has certainly earned THAT!!! My hope for today is that I can be strong and not fall apart the minute I see "Momma", I hope that she will see that we are all really doing well, this sucks!!! but (an Bob HATES this phrase) "It is what it is" and we are all doing what needs to be done. Tuesday can't come soon enough. We will have all the answers to our questions. The results of both biopsy's, the protocol, where and when the treatments start, Tuesday, we can put our life in some form of routine, and routine is good for everyone!!!
Have an amazing Sunday, I know I said I would taker the day off, but sometimes life has other ideas for us.
I wake up when I hear the refrigerator door open, when the bathroom door closes, then he closes his door. It is 3 am and I go to make sure he is OK. He says "as long as I don't move", so jokingly I tell him "don't move". I get a little laugh and he says MOM STOP WORRYING I'M OK!!! GO TO BED!!! I realize he is right, there is nothing I can do, I can't FIX this!!! and I HATE IT!!!!
We all wake up around 8:00. Zack is on the couch watching his favorite automotive shows. Frank is working around the house to clean things up in the yard. He tells me to go with Mom, he will be home. Zack tells me he is feeling better, We have decided that it is better for him to lay on the couch to let the one incision heal. It is in a very uncomfortable place and by sitting makes it hurt more. So.. he has set it all up, MP3 player, cell phone, remote... He has fixed his little corner of the world for the day.
I throw in a couple of loads of laundry, empty the dishwasher, re load the dishwasher and get ready to head out. I worry so about him, I worry so about Mom. She has not sounded good at all since receiving all the news. Am I telling her too much? Am I leaning on her too much? Am I yelling at her too much when she tells me her fears and I EXPECT her to be strong? I think after everything she has been through in her 80 years, she deserves to feel whatever the hell she wants to feel, she has certainly earned THAT!!! My hope for today is that I can be strong and not fall apart the minute I see "Momma", I hope that she will see that we are all really doing well, this sucks!!! but (an Bob HATES this phrase) "It is what it is" and we are all doing what needs to be done. Tuesday can't come soon enough. We will have all the answers to our questions. The results of both biopsy's, the protocol, where and when the treatments start, Tuesday, we can put our life in some form of routine, and routine is good for everyone!!!
Have an amazing Sunday, I know I said I would taker the day off, but sometimes life has other ideas for us.
Saturday, July 21, 2012
Family and Friends... how lucky can we be?
Zack woke up feeling better after a rough night. The pain was all around from every area where they had performed a procedure. He is one tough kid and tells me to go to bed and he will be alright, he says I know you don't sleep well when you worry. I remind him that I am a mother, and it's my job to worry. Once he is settled in and asleep, I will go to bed. He did manage to fall asleep around midnight, and though he said he woke up a couple of times, he fell back asleep.
Darrick ( his cousin) spent the night. The two boys woke up ready for breakfast. They drive to the local Biscuit place (we are in the South, don't forget) and return with breakfast. (having spent so much time running around, groceries are slim). I get a text from Nancy who wants to take me out to lunch and retail therapy. I jump on it today. Right now it is hour to hour. Zack is hanging out at the house with Darrick until it is time to go to their house for our family get together at six. Frank is on the parkway fishing, his "retail therapy".
Nancy and I had a wonderful time, I find a couple of tops that are bright and cheerful ( I need to wear more color right now to keep out of the gloom and doom), we go to our favorite Thai restaurant and the conversation again turns to Zack. That is all consuming right now for me, and with Nancy (and Steve) having gone through such similar circumstances six years earlier, there is now another bond which we both understand. their daughter was in a serious car accident, ended up in a coma and has a TBI. She is a high functioning young lady now, driving, living on her own, going to school, but it was (and sometimes still is) a long and difficult path for them. I had just met and started to work for them just 7 months prior to the accident. We had already formed a bond (instantly) and I witnessed as they made it hour by hour, day by day, month by month. Nancy and I were talking about our mutual pain. As mothers we tend to take on alot, we still want to be everything to everyone, but sometimes something has to give. For me it is currently the little things like laundry, dishes, cooking. I remember Nancy had to stay at the hospital for months, and Steve would have to stay home (1 1/2 hours away) to keep the business going and care for their son who was still in high school. Somehow that gives me comfort now, as I know that Frank must keep working in order to bring in the money, (with his business if he doesn't work, he doesn't get paid.. ( Water feature anyone?) I am blessed as I work three days a week and the days I have missed have been paid for. Remember I told you I have amazing bosses / friends. The other thing we now have in common is survival. I know that Zack is going to be just fine, I know that I am going to make it through all of this a stronger person, and I know that this will make Frank and my relationship even stronger. I understand with all of this, just as it did for Nancy and Steve, that some people will question how we do things, feelings will get hurt. but never intentionally, our bottom line is to keep our son healthy and as happy under these circumstances as possible.
We have an amazing group of friends and family.We are so blessed that I still have my Mom, Brother and Sister, and Franks Brother and Sisters as well as Brother and Sister in Laws living so close. As a matter of fact tomorrow Mom and I are going to do OUR girl thing, and I can't wait to spend the day with her. We have not had much time together these past few weeks and we both are in dire need of our Mom / Sabrina fix. Bobby has been my sounding board when I start to crack. He has a very calming voice and knows how to rationalize my feelings so I don't feel so crazy. Having had panic attacks and now working VERY hard to overcome agoraphobia (for several years now), he has a compassion and understanding of my emotional side. If I wake up in the middle of the night with a panic attack, he or Mom are there to calm me. Hey, what can I say, when I try and wake up Frank, he is telling me where to put what rocks in his deep sleep ( he is building his water feature.... ) LOL
We had a wonderful cookout tonight at Shawn and Floyds house ( Franks sister and our brother in law) The Aunts and Uncles and Cousins and Niece and Nephews were all there to celebrate Betty (Franks mothers) life, whom passed away five years ago today. I know she and Dad are just hanging around looking out for us all. As a matter of fact, when we pulled into their driveway tonight a beautiful blue butterfly flew right in front of our windshield and disappeared. Frank and I looked at each other and said "there was Papa K". We again felt the love and support. More people are finding out and more are following the blog, which makes it so much easier on us. We appreciate everyone understanding this form of communication. Any time anyone wants to call and talk, we are available. If we don't answer, just leave a message and we will call you back. Our doors are always open (unless we are not home, LOL)
Be well tonight and have a great Sunday. I'm taking the day off from blogging but will resume on Monday after the EEG and Echo. Hugs!!!
Darrick ( his cousin) spent the night. The two boys woke up ready for breakfast. They drive to the local Biscuit place (we are in the South, don't forget) and return with breakfast. (having spent so much time running around, groceries are slim). I get a text from Nancy who wants to take me out to lunch and retail therapy. I jump on it today. Right now it is hour to hour. Zack is hanging out at the house with Darrick until it is time to go to their house for our family get together at six. Frank is on the parkway fishing, his "retail therapy".
Nancy and I had a wonderful time, I find a couple of tops that are bright and cheerful ( I need to wear more color right now to keep out of the gloom and doom), we go to our favorite Thai restaurant and the conversation again turns to Zack. That is all consuming right now for me, and with Nancy (and Steve) having gone through such similar circumstances six years earlier, there is now another bond which we both understand. their daughter was in a serious car accident, ended up in a coma and has a TBI. She is a high functioning young lady now, driving, living on her own, going to school, but it was (and sometimes still is) a long and difficult path for them. I had just met and started to work for them just 7 months prior to the accident. We had already formed a bond (instantly) and I witnessed as they made it hour by hour, day by day, month by month. Nancy and I were talking about our mutual pain. As mothers we tend to take on alot, we still want to be everything to everyone, but sometimes something has to give. For me it is currently the little things like laundry, dishes, cooking. I remember Nancy had to stay at the hospital for months, and Steve would have to stay home (1 1/2 hours away) to keep the business going and care for their son who was still in high school. Somehow that gives me comfort now, as I know that Frank must keep working in order to bring in the money, (with his business if he doesn't work, he doesn't get paid.. ( Water feature anyone?) I am blessed as I work three days a week and the days I have missed have been paid for. Remember I told you I have amazing bosses / friends. The other thing we now have in common is survival. I know that Zack is going to be just fine, I know that I am going to make it through all of this a stronger person, and I know that this will make Frank and my relationship even stronger. I understand with all of this, just as it did for Nancy and Steve, that some people will question how we do things, feelings will get hurt. but never intentionally, our bottom line is to keep our son healthy and as happy under these circumstances as possible.
We have an amazing group of friends and family.We are so blessed that I still have my Mom, Brother and Sister, and Franks Brother and Sisters as well as Brother and Sister in Laws living so close. As a matter of fact tomorrow Mom and I are going to do OUR girl thing, and I can't wait to spend the day with her. We have not had much time together these past few weeks and we both are in dire need of our Mom / Sabrina fix. Bobby has been my sounding board when I start to crack. He has a very calming voice and knows how to rationalize my feelings so I don't feel so crazy. Having had panic attacks and now working VERY hard to overcome agoraphobia (for several years now), he has a compassion and understanding of my emotional side. If I wake up in the middle of the night with a panic attack, he or Mom are there to calm me. Hey, what can I say, when I try and wake up Frank, he is telling me where to put what rocks in his deep sleep ( he is building his water feature.... ) LOL
We had a wonderful cookout tonight at Shawn and Floyds house ( Franks sister and our brother in law) The Aunts and Uncles and Cousins and Niece and Nephews were all there to celebrate Betty (Franks mothers) life, whom passed away five years ago today. I know she and Dad are just hanging around looking out for us all. As a matter of fact, when we pulled into their driveway tonight a beautiful blue butterfly flew right in front of our windshield and disappeared. Frank and I looked at each other and said "there was Papa K". We again felt the love and support. More people are finding out and more are following the blog, which makes it so much easier on us. We appreciate everyone understanding this form of communication. Any time anyone wants to call and talk, we are available. If we don't answer, just leave a message and we will call you back. Our doors are always open (unless we are not home, LOL)
Be well tonight and have a great Sunday. I'm taking the day off from blogging but will resume on Monday after the EEG and Echo. Hugs!!!
Friday, July 20, 2012
Calling all doctors......
It is Friday morning. I wake up at 7:30 am after a night filled with panic attacks, hyperventilation and sobbing. I again must see my "baby" go into surgery. I know that everything is going to continue to be alright, I MUST get a grip. We are in the best possible care. The angels have been with us all along and continue to be here. I sit up in bed, breathe in and out slowly, replace negative thoughts with positive. Dr. P's words keep coming back to me "it is treatable and curable". I try and picture life in a year, two, three.. and how we will be looking back wondering how we ever made it through this time. I slowly manage to calm myself down and drift off to sleep. I have become very good at doing this. After years of panic attacks, I have become an expert and self talk and relaxation. Was that all to prepare me for today? Who knows. Who cares, We are here and must learn to cope.
I get out of bed and run around the house frantically as if cleaning and making up the bed are going to make everything better. I decide not to eat breakfast, if he can't eat, I'm not going to! Zack wakes up grumpy. He is tired of the tests, he is tired again of Hospitals, but he doesn't say a word. He must shower with the special antibacterial soap, no cologne, no deodorant, take out his earring, make sure he has the right shirt and shorts so he can get them back on easily after surgery. I look through my closet for the most comfortable outfit and shoes, knowing we are going to be the entire day in the Hospital. I pack my laptop, bring my bills, files, all the things I know I "should" do while there. Which I never even touched!
We arrive at the hospital! They have Valle parking, somehow that makes it a little more fun? Cheap thrills!! We go into a waiting room filled with tons of people talking, watching the large, very loud tv, typing away at their laptops and talking on their cell phones. Little children are running around chasing each other, climbing all over the furniture. I Look at Zack and say "no way... I'm not hanging out here"!! OK, that was selfish, like he is so excited about having to have surgery! But he gets it, he looks around and says "kinda freaky Mom". I don't tell him, but I know that all of these people are waiting for news on their loved ones, they are scared, they are tired. Do they have hope? Do they expect bad news? Were they all surprised by news just like us?
Zack and I are seen very quickly, we visit with the admittance person to do all the paperwork. We then are given directions to pre surgical room. Go down this hall, turn right, then left at J elevator, then go up to 2R, not 2L, then turn left... Ok.... under "normal" circumstances I would be lost, now???? We "hitch a ride" by following a couple who are being escorted to the same area. We enter a large area full of nurses and patients being shuffled around. We are directed to a small room with a rainbow colored worm on the wall. We are in the children's section. I start to remember a stuffed worm that Zack had when he was little. It was four times his size (not an easy feat even back then) and he slept with it all the time. II begin to laugh and tell Zack about the worm. He vaguely remembers it, and comments that I am remembering a bunch of things from his childhood. I tell him that is normal to think of the simple things that brought us and him joy, He likes the visit down memory lane.
A sweet nurse comes in, gives Zack the gown, booties and head cover. He takes out his contacts, changes into the gown (his least favorite to wear because of the possible exposure) He asks me to make sure that everything is covered. I tell him that no one loves these gowns. The nurse comes in again, inserts the iv into his hand, takes his blood pressure, weighs him, and puts on the bracelet with name, date of birth and other pertinent information. She reads over the papers and we go over the procedures. She is confused, she has the port scheduled, but nothing else. We tell her that he is to also have two other procedures. She quickly goes to another nurse and asks her to make a few calls, this after asking if I had to documents with today's procedures. I say no, and immediately pick up my cell phone and call the cancer center. I tell them that the nurse does not have the proper paper work for the surgery and my son is not going anywhere until everyone is on the same page. She asks to speak to the nurse, who then explains that since Zack's doctor from the center is gong to do one of the procedures, he has the papers and is bringing them himself and the other doctors office should have faxed over their information. ( I think because we initially cancelled for Thursday, they had them in another location, BUT this is a very good reason why parents should NEVER trust ANYONE 100% with their childs care, it is up to the parents to make sure that they know everything that is happening to their child at every moment. ).We clarify which surgeon is going to do which procedure. We meet the anesthesiologist, his assistant and her assistant. We go over the fact that he has no allergies, will be getting a mild sedative and then the tube down his through to help him breathe during the surgery, he will completely out the entire time. Dr. S comes in, he is one of the team that we will be working with at the cancer center. He explains to Zack and I that he is going to do the bone marrow biopsy on each hip. I sign more papers... Dr. W comes in, he explains that he is going to put the port in and remove two of the lymph nodes around Zack's pelvis. All of these will be followed by a pathology report on Tuesday. SO.. we will know on Tuesday that he is 100% cancer free. I talk to the nurse a little more about St. Judes and the research. Is Mission the right place. Her answer? "this isn't Podunk USA... I had Breast Cancer and they saved my life" Enough said....
Zack is wheeled off for surgery. I give him, embarrassingly, tons of Mamma kisses while he exits the tiny space. He is ready, he is done with not being able to eat, having to hang out in hospitals, wearing bracelets with his name and birth date on it.
I head downstairs, they give me a small round disc that will light up when he is done with surgery. I tell the nurse that unless a steak and lobster dinner comes with the disc I don't want it. Of course, again with the humor. I need it now more than ever. She seemed to get a kick out of it too. She says only if YOUR buying. I look at her and tell her "trust me, I'm buying!!!" I find a tiny little cafe, go inside and find they have actual food, not from a machine, but hand prepared. I order a pannini and drink, go outside and find a comfortable corner to sit in. ( I like my corners). I am surrounded by people still talking on their cell phones and others running around trying to find a plug for their soon dead laptops. Everyone is watching everyone, we all smile at each other, after all, we are all awaiting good news. I decide I am going to watch Greys Anatomy on my laptop instead of doing what a responsible adult would do, pay bills, balance checkbook... I can do all of that tomorrow. Today, rest.
One hour goes by and Dr. S walks up to me. He is smiling and says that he was able to do the bone marrow biopsy without any problems. I ask him, in your years of experience, and knowing all of the results that we have received, do you feel we will have good news from the biopsy. He smiles again and says he really feels we will. (Not trying to cover his ass with Dr lingo, but being a real human being, with real hope). Two more hours pass and "Fisher Family" is called over the intercom. I collect all my belongings, including the white plastic bag containing all of Zack's belongings, and am greeted by Dr. W. He is smiling and said that everything went well with the removal of two lymph nodes, in the pelvic region which will also go to pathology. He said he installed the port and no stitches will need to be removed. He said just leave the tape on the incision and they will come off on their own. He can shower in the morning, but not swim for a couple of weeks until it completely heals. About 30 minutes later I am escorted to recovery. Thank God, or I never would have found it on my own. It is heartbreaking to see him, he is pale and in pain. The nurse tells me that they gave him something to help with the pain and we will get a prescription for Tylonol with Codine. He slowly is waking up, pain level is 10 blood pressure is a little high, within 15 minutes pain is 4 and blood pressure is normal. They decide to move him bed and all to discharge. We meet with yet another nurse, recently relocated here from NY. She is very business like, but slowly warms up when Zack is not bouncing back as expected. He is groggy, sleeps as we turn out the over head lights. He "looses" what little water he was given, and within 30 minutes, his color is back, he is asking for his phone and MP3 player and is more talkative. I breathe a sigh of relief as does the nurse. She says that he is such a sweet young man and is so glad he is feeling better. We don't feel rushed, she tells us to take our time. I plug my phone in the corner and continue to play my game, Zack manages to get a couple of crackers in his system (first food since 9 pm the night before and it is 4:40 pm), he also drinks some ginger-ale. He perks up even more. He looks at me and says "I think I can make it for a steak dinner", laughing I say... I think we need to go home and rest, we can eat a lighter dinner at home. He does not argue with me, confirming that he is not really ready for yet another steak dinner. (his new after hospital dinner treat)
Our car is brought around to the discharge door. (remember my treat of vale parking?). We are walked to the door and sent on our way. We call Frank and tell him we are coming home. Once home, I run to the pharmacy to fill the prescription while Frank fixes dinner. Zack is already on the phone to his cousin Darrick and asking him to come spend the night. Life if back to normal, at least for a couple of days and I rejoice in the simplicity of it all.
All day my phone rang with calls, texts and emails from so many people around the world praying and wishing us the best. We are truely surrounded by love and are blessed,.
I get out of bed and run around the house frantically as if cleaning and making up the bed are going to make everything better. I decide not to eat breakfast, if he can't eat, I'm not going to! Zack wakes up grumpy. He is tired of the tests, he is tired again of Hospitals, but he doesn't say a word. He must shower with the special antibacterial soap, no cologne, no deodorant, take out his earring, make sure he has the right shirt and shorts so he can get them back on easily after surgery. I look through my closet for the most comfortable outfit and shoes, knowing we are going to be the entire day in the Hospital. I pack my laptop, bring my bills, files, all the things I know I "should" do while there. Which I never even touched!
We arrive at the hospital! They have Valle parking, somehow that makes it a little more fun? Cheap thrills!! We go into a waiting room filled with tons of people talking, watching the large, very loud tv, typing away at their laptops and talking on their cell phones. Little children are running around chasing each other, climbing all over the furniture. I Look at Zack and say "no way... I'm not hanging out here"!! OK, that was selfish, like he is so excited about having to have surgery! But he gets it, he looks around and says "kinda freaky Mom". I don't tell him, but I know that all of these people are waiting for news on their loved ones, they are scared, they are tired. Do they have hope? Do they expect bad news? Were they all surprised by news just like us?
Zack and I are seen very quickly, we visit with the admittance person to do all the paperwork. We then are given directions to pre surgical room. Go down this hall, turn right, then left at J elevator, then go up to 2R, not 2L, then turn left... Ok.... under "normal" circumstances I would be lost, now???? We "hitch a ride" by following a couple who are being escorted to the same area. We enter a large area full of nurses and patients being shuffled around. We are directed to a small room with a rainbow colored worm on the wall. We are in the children's section. I start to remember a stuffed worm that Zack had when he was little. It was four times his size (not an easy feat even back then) and he slept with it all the time. II begin to laugh and tell Zack about the worm. He vaguely remembers it, and comments that I am remembering a bunch of things from his childhood. I tell him that is normal to think of the simple things that brought us and him joy, He likes the visit down memory lane.
A sweet nurse comes in, gives Zack the gown, booties and head cover. He takes out his contacts, changes into the gown (his least favorite to wear because of the possible exposure) He asks me to make sure that everything is covered. I tell him that no one loves these gowns. The nurse comes in again, inserts the iv into his hand, takes his blood pressure, weighs him, and puts on the bracelet with name, date of birth and other pertinent information. She reads over the papers and we go over the procedures. She is confused, she has the port scheduled, but nothing else. We tell her that he is to also have two other procedures. She quickly goes to another nurse and asks her to make a few calls, this after asking if I had to documents with today's procedures. I say no, and immediately pick up my cell phone and call the cancer center. I tell them that the nurse does not have the proper paper work for the surgery and my son is not going anywhere until everyone is on the same page. She asks to speak to the nurse, who then explains that since Zack's doctor from the center is gong to do one of the procedures, he has the papers and is bringing them himself and the other doctors office should have faxed over their information. ( I think because we initially cancelled for Thursday, they had them in another location, BUT this is a very good reason why parents should NEVER trust ANYONE 100% with their childs care, it is up to the parents to make sure that they know everything that is happening to their child at every moment. ).We clarify which surgeon is going to do which procedure. We meet the anesthesiologist, his assistant and her assistant. We go over the fact that he has no allergies, will be getting a mild sedative and then the tube down his through to help him breathe during the surgery, he will completely out the entire time. Dr. S comes in, he is one of the team that we will be working with at the cancer center. He explains to Zack and I that he is going to do the bone marrow biopsy on each hip. I sign more papers... Dr. W comes in, he explains that he is going to put the port in and remove two of the lymph nodes around Zack's pelvis. All of these will be followed by a pathology report on Tuesday. SO.. we will know on Tuesday that he is 100% cancer free. I talk to the nurse a little more about St. Judes and the research. Is Mission the right place. Her answer? "this isn't Podunk USA... I had Breast Cancer and they saved my life" Enough said....
Zack is wheeled off for surgery. I give him, embarrassingly, tons of Mamma kisses while he exits the tiny space. He is ready, he is done with not being able to eat, having to hang out in hospitals, wearing bracelets with his name and birth date on it.
I head downstairs, they give me a small round disc that will light up when he is done with surgery. I tell the nurse that unless a steak and lobster dinner comes with the disc I don't want it. Of course, again with the humor. I need it now more than ever. She seemed to get a kick out of it too. She says only if YOUR buying. I look at her and tell her "trust me, I'm buying!!!" I find a tiny little cafe, go inside and find they have actual food, not from a machine, but hand prepared. I order a pannini and drink, go outside and find a comfortable corner to sit in. ( I like my corners). I am surrounded by people still talking on their cell phones and others running around trying to find a plug for their soon dead laptops. Everyone is watching everyone, we all smile at each other, after all, we are all awaiting good news. I decide I am going to watch Greys Anatomy on my laptop instead of doing what a responsible adult would do, pay bills, balance checkbook... I can do all of that tomorrow. Today, rest.
One hour goes by and Dr. S walks up to me. He is smiling and says that he was able to do the bone marrow biopsy without any problems. I ask him, in your years of experience, and knowing all of the results that we have received, do you feel we will have good news from the biopsy. He smiles again and says he really feels we will. (Not trying to cover his ass with Dr lingo, but being a real human being, with real hope). Two more hours pass and "Fisher Family" is called over the intercom. I collect all my belongings, including the white plastic bag containing all of Zack's belongings, and am greeted by Dr. W. He is smiling and said that everything went well with the removal of two lymph nodes, in the pelvic region which will also go to pathology. He said he installed the port and no stitches will need to be removed. He said just leave the tape on the incision and they will come off on their own. He can shower in the morning, but not swim for a couple of weeks until it completely heals. About 30 minutes later I am escorted to recovery. Thank God, or I never would have found it on my own. It is heartbreaking to see him, he is pale and in pain. The nurse tells me that they gave him something to help with the pain and we will get a prescription for Tylonol with Codine. He slowly is waking up, pain level is 10 blood pressure is a little high, within 15 minutes pain is 4 and blood pressure is normal. They decide to move him bed and all to discharge. We meet with yet another nurse, recently relocated here from NY. She is very business like, but slowly warms up when Zack is not bouncing back as expected. He is groggy, sleeps as we turn out the over head lights. He "looses" what little water he was given, and within 30 minutes, his color is back, he is asking for his phone and MP3 player and is more talkative. I breathe a sigh of relief as does the nurse. She says that he is such a sweet young man and is so glad he is feeling better. We don't feel rushed, she tells us to take our time. I plug my phone in the corner and continue to play my game, Zack manages to get a couple of crackers in his system (first food since 9 pm the night before and it is 4:40 pm), he also drinks some ginger-ale. He perks up even more. He looks at me and says "I think I can make it for a steak dinner", laughing I say... I think we need to go home and rest, we can eat a lighter dinner at home. He does not argue with me, confirming that he is not really ready for yet another steak dinner. (his new after hospital dinner treat)Our car is brought around to the discharge door. (remember my treat of vale parking?). We are walked to the door and sent on our way. We call Frank and tell him we are coming home. Once home, I run to the pharmacy to fill the prescription while Frank fixes dinner. Zack is already on the phone to his cousin Darrick and asking him to come spend the night. Life if back to normal, at least for a couple of days and I rejoice in the simplicity of it all.
All day my phone rang with calls, texts and emails from so many people around the world praying and wishing us the best. We are truely surrounded by love and are blessed,.
Thursday, July 19, 2012
Test Results are in, Surgery Scheduled
I am at work, as is Frank, Zack is hanging out with his friends and going to see his Aunt Jamey. The "protection" starts. I text Jamey "do you or any of the kids have a cold, have been sick or a runny nose, even if it's allergies" She replies, "no we are all healthy, the house is clean but we do have two cats and a dog", I reply "we are even then, I have Frank".... we get a good laugh in and she writes that she totally understands.
We get a call from the Cancer Center and there is no trace of anything in his chest or abdominal area! This is GREAT news!! This means it has not spread. We make it through another huge hurdle.
I get a call from the surgeons office, the anesthesiologist and the scheduling dept. Zack's surgery will be tomorrow ( Friday) at Noon. We are to be there at 10:45 to prep him. The surgery, as with everything else is at Mission Hospital in Asheville, NC. A big (ok I live in Brevard, people) city just 45 minutes away. They will be installing the port and do a bone marrow biopsy on his hip. This is the FINAL test to show that he does not have any more cancer cells in his body. The port will be inserted into his chest on the left side, this will enable them to connect the tubes for his iv for the chemotherapy. This will stay in him through the course of the treatments. Of course I had to make some joke about charging my cell phone through the port, I did manage to get one chuckle... (Humor is my way of coping).
My wish is to start the chemo on Tuesday next week. I am off work and can be there for a day or two to get him settled in. We are to go and meet with the Doctors after the surgery tomorrow to set up the rest of the treatment schedule.
Glossary: These are all the tests that Zack has had to date.
Cancer:
Cancer is a complex disease and occurs when cells in the body begin to grow chaotically. Normally, cells grow, divide, and produce more cells to keep the body healthy and functioning properly. Sometimes, however, the process goes astray; cells keep dividing when new cells are not needed. Some types of cells are more prone to abnormal growth than others. The mass of extra cells forms a growth or tumor, which can be benign or malignant.
MRI:
Magnetic resonance imaging (MRI) is a relatively new and painless technique that allows doctors to look at the soft tissues of the body. it is different from regular x-rays like you get in a doctor's office because it does not expose you to radiation. Instead, a radio frequency is used to knock your hydrogen atoms out of line. As they move back to their natural alignment, each hydrogen atom in your cells emits a tiny electric signal. The MRI scanner has very strong magnets in special coils to detect the electric signal. A computer uses these signals to create a detailed image of your soft tissues.
Magnetic resonance imaging allows doctors to see the image of many structures inside joints that cannot be felt by direct touch with their fingers. Some of these structures are ligaments (tissues connecting bones), menisci (tissues absorbing shock in the knee), and tendons (tissues connecting muscle to bone). The ability to look at these structures inside an injured joint has greatly improved patient care because, in many instances, it enables doctors to correctly diagnose and treat the injured structures earlier.
PET scan:
Positron Emission Tomography (PET) and Computed Tomography (CT) imaging have become essential diagnostic tools physicians use to reveal the presence and severity of cancers. PET/CT imaging helps physicians detect cancer, evaluate the extent of disease, select the most appropriate treatments, determine if the therapy is working, and detect any recurrent tumors.
Before
a PET/CT scan, the patient receives an intravenous injection of
radioactive glucose. Many cancer cells are highly metabolic and rapidly
synthesize the radioactive glucose. Information regarding the location
of abnormal levels of radioactive glucose obtained from the whole-body
PET/CT scan helps physicians effectively pinpoint the source of cancer
and detect whether cancer is isolated to one specific area or has spread
to other organs.
From this information physicians can plan an effective treatment strategy. Treatment options include surgery, radiation therapy, systemic therapy, or a combination therapy where one or more of these options are combined.
During the course of treatment, the information from the PET/CT scan allows physicians to monitor the effectiveness of cancer therapies and provides physicians with the opportunity to change the treatment strategy if it is not working, avoiding the cost and discomfort of ineffective therapeutic procedures.
After completing the treatment regimen, a follow-up whole-body PET/CT scan can provide information to assess if the treatment was successful and if areas that were previously abnormally metabolically active have responded. Often, scar tissue at the site of surgical resection or radiation treatment may appear as an abnormality on the CT scan. The PET portion of the PET/CT scan can detect residual disease within the scar tissue and indicate if the treatment was successful or if the tumor has returned.
CT Scan:
A computed tomography (CT) scan uses X-rays to make detailed pictures of structures inside of the body.
During the test, you will lie on a table that is attached to the CT scanner, which is a large doughnut-shaped machine. The CT scanner sends X-rays through the body area being studied. Each rotation of the scanner provides a picture of a thin slice of the organ
or area. All of the pictures are saved as a
group on a computer. They also can be printed.
In some cases, a dye called contrast material may be used. It may be put in a vein (IV) in your arm, or it may be placed into other parts of your body (such as the rectum or a joint) to see those areas better. For some types of CT scans you drink the dye. The dye makes structures and organs easier to see on the CT pictures.
A CT scan can be used to study all parts of your body, such as the chest, belly, pelvis, or an arm or leg. It can take pictures of body organs, such as the liver, pancreas, intestines, kidneys, bladder, adrenal glands, lungs, and heart. It also can study blood vessels, bones, and the spinal cord.
Fluoroscopy CT is a special test that is not widely available. It uses a steady beam of X-rays to look at movement within the body. It allows the doctor to see your organs move or to guide a biopsy needle or other instrument into the right place inside your body.
Bone Scan:
A bone scan is a test to help find the cause of your back pain. It can be done to find damage to the bones, find cancer that has spread to the bones, and watch problems such as infection and trauma to the bones. A bone scan can often find a problem days to months earlier than a regular X-ray test.
For a bone scan, a radioactive substance is injected into a vein in your arm. This substance, called a tracer, travels through your bloodstream and into your bones. This could take several hours.
A special camera takes pictures of the tracer in your bones. Areas that absorb little or no amount of tracer appear as dark or "cold" spots. This could show a lack of blood supply to the bone or certain types of cancer.
Areas of fast bone growth or repair absorb more tracer and show up as bright or "hot" spots in the pictures. Hot spots may point to problems such as arthritis, a tumor, a fracture, or an infection.
We get a call from the Cancer Center and there is no trace of anything in his chest or abdominal area! This is GREAT news!! This means it has not spread. We make it through another huge hurdle.
I get a call from the surgeons office, the anesthesiologist and the scheduling dept. Zack's surgery will be tomorrow ( Friday) at Noon. We are to be there at 10:45 to prep him. The surgery, as with everything else is at Mission Hospital in Asheville, NC. A big (ok I live in Brevard, people) city just 45 minutes away. They will be installing the port and do a bone marrow biopsy on his hip. This is the FINAL test to show that he does not have any more cancer cells in his body. The port will be inserted into his chest on the left side, this will enable them to connect the tubes for his iv for the chemotherapy. This will stay in him through the course of the treatments. Of course I had to make some joke about charging my cell phone through the port, I did manage to get one chuckle... (Humor is my way of coping).
My wish is to start the chemo on Tuesday next week. I am off work and can be there for a day or two to get him settled in. We are to go and meet with the Doctors after the surgery tomorrow to set up the rest of the treatment schedule.
Glossary: These are all the tests that Zack has had to date.
Cancer:
Cancer is a complex disease and occurs when cells in the body begin to grow chaotically. Normally, cells grow, divide, and produce more cells to keep the body healthy and functioning properly. Sometimes, however, the process goes astray; cells keep dividing when new cells are not needed. Some types of cells are more prone to abnormal growth than others. The mass of extra cells forms a growth or tumor, which can be benign or malignant.
MRI:
Magnetic resonance imaging (MRI) is a relatively new and painless technique that allows doctors to look at the soft tissues of the body. it is different from regular x-rays like you get in a doctor's office because it does not expose you to radiation. Instead, a radio frequency is used to knock your hydrogen atoms out of line. As they move back to their natural alignment, each hydrogen atom in your cells emits a tiny electric signal. The MRI scanner has very strong magnets in special coils to detect the electric signal. A computer uses these signals to create a detailed image of your soft tissues.
Magnetic resonance imaging allows doctors to see the image of many structures inside joints that cannot be felt by direct touch with their fingers. Some of these structures are ligaments (tissues connecting bones), menisci (tissues absorbing shock in the knee), and tendons (tissues connecting muscle to bone). The ability to look at these structures inside an injured joint has greatly improved patient care because, in many instances, it enables doctors to correctly diagnose and treat the injured structures earlier.
PET scan:
Positron Emission Tomography (PET) and Computed Tomography (CT) imaging have become essential diagnostic tools physicians use to reveal the presence and severity of cancers. PET/CT imaging helps physicians detect cancer, evaluate the extent of disease, select the most appropriate treatments, determine if the therapy is working, and detect any recurrent tumors.
Before
a PET/CT scan, the patient receives an intravenous injection of
radioactive glucose. Many cancer cells are highly metabolic and rapidly
synthesize the radioactive glucose. Information regarding the location
of abnormal levels of radioactive glucose obtained from the whole-body
PET/CT scan helps physicians effectively pinpoint the source of cancer
and detect whether cancer is isolated to one specific area or has spread
to other organs.From this information physicians can plan an effective treatment strategy. Treatment options include surgery, radiation therapy, systemic therapy, or a combination therapy where one or more of these options are combined.
During the course of treatment, the information from the PET/CT scan allows physicians to monitor the effectiveness of cancer therapies and provides physicians with the opportunity to change the treatment strategy if it is not working, avoiding the cost and discomfort of ineffective therapeutic procedures.
After completing the treatment regimen, a follow-up whole-body PET/CT scan can provide information to assess if the treatment was successful and if areas that were previously abnormally metabolically active have responded. Often, scar tissue at the site of surgical resection or radiation treatment may appear as an abnormality on the CT scan. The PET portion of the PET/CT scan can detect residual disease within the scar tissue and indicate if the treatment was successful or if the tumor has returned.
CT Scan:
A computed tomography (CT) scan uses X-rays to make detailed pictures of structures inside of the body.
During the test, you will lie on a table that is attached to the CT scanner, which is a large doughnut-shaped machine. The CT scanner sends X-rays through the body area being studied. Each rotation of the scanner provides a picture of a thin slice of the organ
or area. All of the pictures are saved as a
group on a computer. They also can be printed.In some cases, a dye called contrast material may be used. It may be put in a vein (IV) in your arm, or it may be placed into other parts of your body (such as the rectum or a joint) to see those areas better. For some types of CT scans you drink the dye. The dye makes structures and organs easier to see on the CT pictures.
A CT scan can be used to study all parts of your body, such as the chest, belly, pelvis, or an arm or leg. It can take pictures of body organs, such as the liver, pancreas, intestines, kidneys, bladder, adrenal glands, lungs, and heart. It also can study blood vessels, bones, and the spinal cord.
Fluoroscopy CT is a special test that is not widely available. It uses a steady beam of X-rays to look at movement within the body. It allows the doctor to see your organs move or to guide a biopsy needle or other instrument into the right place inside your body.
Bone Scan:
A bone scan is a test to help find the cause of your back pain. It can be done to find damage to the bones, find cancer that has spread to the bones, and watch problems such as infection and trauma to the bones. A bone scan can often find a problem days to months earlier than a regular X-ray test.
For a bone scan, a radioactive substance is injected into a vein in your arm. This substance, called a tracer, travels through your bloodstream and into your bones. This could take several hours.
A special camera takes pictures of the tracer in your bones. Areas that absorb little or no amount of tracer appear as dark or "cold" spots. This could show a lack of blood supply to the bone or certain types of cancer.
Areas of fast bone growth or repair absorb more tracer and show up as bright or "hot" spots in the pictures. Hot spots may point to problems such as arthritis, a tumor, a fracture, or an infection.
It will be just two hours......
Wednesday were the CT and Bone scans. Zack and I head out to Mission after I managed to put in a couple of hours of work. Well... attempted to. The minute I got there my cell phone rang with surgeons, the anesthesiology dept, and whomever else needed Zack's information for the surgery that I kindly informed we were postponing until another opinion is finalized. Drs. Steve and Nancy being who they are, simply said, take the calls do whatever you need to do, you shouldn't even be here, we are here for you. Amazing people and dear dear friends. (Nancy is my bff, but we try and keep that our little secret... NOT!!!!)
The scans were scheduled for 12 Noon, we arrive at 11:30 and within 15 minutes a nurse comes out and says it will be 2 hours. (The two hours turned into 4 1/2 hrs as the nurse was not aware of both scans being performed... Not her department....) Zack agrees to text me when he is done, and I head down the long hall to locate a comfortable waiting area. I am looking forward to a little down time, just sit, breathe, maybe even play my video games on my phone, (yes still addicted to Majong, Scrabble and Temple Run.. hey stop laughing!) . I locate the only corner in the Hospital right outside the Emergency Room entry where the snacks are ( is there any other place?) and grab a cappuccino out of the machine. I settle on a comfortable bench near a large window to make sure I have good cell phone coverage for both the Doctor and Zack to reach me.
I lay out the folders with Zack's medical information and start to organize them a little better. I am just getting settled in when a young woman (Miriam) walks up and introduces herself to me as one of the case workers from the Cancer Center. She is sweet and has a very calming voice. I offer her a seat and she starts to apologize for anything that may have happened the day before. We talked for over two hours, I felt very much at home with her, telling her of my fears, concerns and why we felt we needed another opinion and possible treatment that would be covered financially. She pulls out her lap top and we start to handle my questions one at a time, she never once looked at the time, would sit back when listening to me, and just kept reassuring me that she had no where else to be, she would stay until I had all my questions answered. She showed me a sight http://www.inclusivehealth.org/ where you can now ( THANK YOU PRESIDENT OBAMA)... get healthcare, even if you are not insured (us) AND/OR have a pre-existing condition (again us). The coverage is $182.00 a month for a $1,000 deductible 80/20 after $5, 500 they cover 100% up to 1 million. BIG relief!! We then discussed St. Judes as she works with many of the staff there. She told me not to get my hopes up, because in her research they offered the same Trial Protocol that we were turned down (due to the surgery). She said that all Trial protocols must follow the exact guidelines. You would think after years of "Greys Anatomy" I would know this!!! That's how Meredith messed with Mc Dreamy's Alzheimer's research and they almost divorced over it.... but I digress... We talked about (sorry if you are uncomfortable with this) the fact that chemo could make him sterile, so we make arrangements for his future. I look at her and it hits me "WE are the faces on the posters of the Hospital" "When the Hell did THAT happen?" I start to cry and she sits there with comforting eyes, trying to find a kleenex. I reach in my purse and grab my Grandmother's hankie with the big letter "E" for Elvire. I tell Miriam, I have a piece of everyone with me. Including the heart shaped stone from Nancy. She stays a little longer and then I Thank her for all her time. I know feel more in control and better about our prospects.
I settle back into my corner, call the insurance company and there is another voice of an angel. She tells me to go online and you will be covered by September 1. She says "you go and take care of your baby, Momma Bear", yes I will... I can do this! I also know who to call for assistance until then (or not). I decide I am ready to hear from St. Jude's, I call and they know me, know the case but are unable to discuss with me. THIS kind of freaks me out a bit, so I call Dr. P who immediately calls me back with the news.... He discussed Zack's case with a doctor at St. Jude and because he had the surgery, he is not eligible. The good news is, they would give him the exact same protocol as Mission. Mission also consults with St. Jude's in the event something comes up. I call Frank, run everything by him and he feels we got the information we needed. I tell him about the insurance, he is thrilled, I decide to rub the Obama Victory in his face later on.. (LOL) SO...Mission it is!!
After hanging up from Frank, I get a call from Trish at Brevard High School, she tells me she is working on something for Zack showing that he needs special care. I break the news that Zack will not be returning to school, but will complete his requirements through the school. What do we need to do. She tells me to hang on and she will look into it. Two minutes later the phone rings.. and it is Lisa Chapman, Assistant Principal. She is so upset to hear about Zack, he is family, he is my buddy!!! ( Lisa happens to be Franks, and Zack's cousin on Franks father's side) She tells me she understands him not returning to school, it is too dangerous for his immune system. WELL, don't you worry, you focus and getting him better, we will get him a Chrome Pad, all the kids are getting that this year, and he can do his courses online. I will talk to him and see what online courses he would like to take that would keep him interested, he only needs one semester of English and three Electives to graduate. She doesn't mention the Senior Project, but we have that covered, Zack is going to work with a neighbor to re build something on a car (Ya think???).. She tells me how popular he is, how many people love him, she says to give him a great big hug and tell him he will have many visitors. I seem to loose it most when they talk about his school. This being his Senior Year is a big deal, but I remind him that BEING here for his senior year and the rest of the years to follow are just as important. He will not miss on seeing his friends, or staying in touch with anyone. He won't have to wake up early. Anything I can come up with to help him feel better.
Zack is finally out of the testing, we decide to go to his favorite Long Horn Steakhouse, and just chill. I tell him the news about St. Jude's and he is THRILLED!!! He tells me that he doesn't like to fly, didn't want to be away from his friends, and wants life to be as normal as possible. I am relieved! For the first time I feel like we are doing something right, mind you I KNOW we haven't done anything wrong, but as a parent you still feel some form of guilt. I call the Cancer Center and tell them we are on for the protocol. A few minutes later I get a call from Miriam calls me and tells me she heard the news. She is pleased and KNOWS that we will get the best care, I too am convinced. There comes a point where you have to trust, and if need be I can always take his records to Boston or Houston for information.
We head to Mom and Bobs. Oscar is there and we want to make sure we get a visit in with him. I surprise him on the way and pull into Best Buy. He looks are me and says his favorite word "Question Mark" with a smile. I tell him to go inside and look at the MPs players. I make an executive decision that he needs something to keep him busy if he is going to be in the Hospital for 3 - 5 days at a time. We find the perfect match, he can play games, watch movies, download his own music and go online. He immediately downloads Skype and I then realize that I can "visit" with him on my lunch breaks via the internet, so we download the same on my phone. This makes him very happy. I tell him NOT to get used to being spoiled, that is it! (Yeah right!)
We arrive at Moms and she looks sad, this has been so hard on her. She helped raise Zack ( at the shows and in the shop) until he went to kindergarten. They have an especially close bond and she hates seeing him go through this. She is worried about our choice. At my request so many people have come out with locations for us to pursue. Ultimately this is the best choice we have, given all the factors. With cancer they say it is 2/3 mental and 1/3 treatment. If Zack is not with his support team, that will affect him too much, a risk I am not willing to take. Mom explains that it takes her a couple of days to realize what is going on and she is sure she will do better soon. I want to take the pain away from her, but this is another part of life that sucks, but like the Doctor said it is treatable and curable!!!
We leave there and head home. I get home and have a melt down because of two close calls on the road, a mailbox and dear jumped out at us. ( you figure out which is true... LOL) Zack runs to the back, punches the dirt bank in the back of our house, gets his hands dirty but not broken TYG, and I call my mentor Bob (brother of course), he is the calmer in the family. Poor Frank comes out to greet us and is met with two VERY emotional people. He takes care of Zack, gives me a hug, takes my purse and leaves me to my phone therapy. After about thirty minutes, I am calm again, Zack is asking if he can go to his friends house, I send him on his way and then fill Nancy in on the days events. We hang up after about an hour and I crawl into bed knowing that it will all start over again soon, but at least tomorrow will be "normal". Zack will be with his friends ( in my car.. YIKES!!), I will go to work as will Frank. We will have a normal dinner, maybe a movie and be ready to face another day....
Tuesday, July 17, 2012
Take the rugs away from the Doctors
AGAIN the rug is pulled from under us! How many times is this shit going to happen? Frank, Zack and I go to meet with the Doctors at Mission regarding the Protocol Trial. We are introduced to ONE doctor and ONE nurse. He TELLS us that we are going to do a CT scan because "something" is showing in the lymph nodes in the pelvic area. He just wants to make sure that everything is gone? While doing the CT scan, they will do a bone scan as well. Um, excuse me? We were told that it wasn't in any of the organs, that everything was gone and now this? He then proceeds to tell us that this will happen tomorrow, and the surgery (yes another surgery) will happen on Thursday to install the port for the chemotherapy and while they are in there doing that they will do a bone marrow extraction just in case they need this later on, or was it test the bone marrow. Oh yes, and Zack won't be returning to school this year because his immune system won't be strong enough to fight off diseases that are lurking around the schools, but he can do it all from home including his Senior project. He will be in the hospital for 3 -5 days for the treatment, but there are lots of game systems he can play and a TV and people there to make sure he is entertained. Oh and you are not eligible for the protocol because Zack already had surgery to remove the tumor, but you would have had to pay for that anyway, it wasn't at no cost. He leaves to make all the appointments, the nurse returns with a doll and proceeds to show us how the port is going to be installed.
I text Nick (my nephew and recent graduate as a DO) and he calls me, just in the "nick" of time... I run out into the hall, I can't breathe, I can't collect myself, he asks if I'm there, I start to cry, his calming voice says It's okay Aunt Sabrina, it's okay. I don't understand? why are they telling us all of this, why not in the trial, why not realize that they just told my son, a young healthy young man that he can't play football, he can't go to school with his friends, he can't go to school in the afternoon to learn automotive (his true love). Do they not have feelings? Do they not realize that all he wants is to live life? He explains calmly why they are doing the tests, it all makes sense when he explains it, but for the life of me I can't remember a word of it. I am calmer, OK, we can do this, he is still in great shape, it still hasn't gone anywhere major, if anywhere at all, they just need to make sure, this could just be fluids... I think.. It's so hard to get excited, they keep pulling the rugs from under us. As I walk back into the room, I see a mother, her young daughter is in one of the treatment chairs, we make eye contact, she sees me wipe away my tears and looks at me with compassion. She was in my shoes not too long ago, she knows what I'm feeling, she is telling me to hang in there with her eyes. OK we can do this!!
I step back into the room and the nurse has finished showing Zack the procedure for the port. The nurse shows me and I am numb. They want to stick THAT inside my son? A boy that has had one surgery his entire life and that was to remove this fucking tumor ( I told you that word will show up). Why aren't THEY freaking out about this? Oh... They do this all the time, they are used to this, one day, I guess I too be used to this, Frank will be used to this, this will become a part of Zack's life for the next year, he will be used to the chemo, the needles, the tests..... it will be a part of all our lives. Everyone connected to us, we are all on this journey together. . We feel so much love from our friends all around the world. Doors are opening for us all around, and we must trust that the right treatment will be there for Zack.
We tell the Doctor that we will look into a second opinion as well, but will continue with the CT and bone scan tomorrow. We don't cancel the surgery for Thursday, one day at a time. We leave and decided to grab dinner at a local restaurant. From the car Frank calls a client and friend of ours. She says St. Judes... go nowhere else. They took care of her son and her. They can do the protocol, and they cover all expenses. Frank thanks her and snaps the cell phone closed, announces that we are going to St. Judes in Memphis. Zack and I freak out!!! We can't move there for a year, what about my friends Dad? My life is here Dad!!! I have to work too so we can pay the bills Frank, are you crazy? have you lost your mind? He steps out of the car to breathe ( I find out later that we scared the Hell out of him, he was trying to help and we are yelling at him in fear), this is all new to us all, we ask questions and get more questions, tests, fears... We are all doing the best we can. He gets back in the car, we can't eat, who can think of food at this time, not even me. We drive home, Zack falls asleep in the backseat, he is snoring he is so exhausted. I call St. Judes and ask what we need to do, she needs a referral from his doctor. I call his doctor, he has gone for the day, the nurse assures me he will call in the morning. I grab Franks hand, tell him we are a team and must be strong together.
We call our dear friend Lee ( family friend since before I was born). Auntie Lee, as I like to call her, is a tough, tell it like it is personality. My kind of people!!! Lee can help us, she knows people, her daughter lives in Boston and knows the hospital there, maybe she knows about St. Judes too.Lee's calming voice answers the phone. I tell her what all has happened, she is on speaker so Frank can hear too. She doesn't know much about them, but said that there is no reason to rush and make this decision in two days. If this was so urgent why then sent me on vacation for a week? I'm sure you have a couple more days to figure out the next step, contact St. Judes and see if this is an option. Go home, do research online, find out all you can on them. Frank gives a thumbs up. I am calmer, we will go home and research.
We decide to continue with the CT, but will hold off until we hear from St. Judes about the port insertion. No need to do that if St. Judes accepts us. I make my usual phone calls to Nancy, Mom and Bob. I had asked Nick if he could call his mother (my sister Rhonda) because he explained it all so well to me that he could do that for her. Nancy comes over to give her love and support. We feel so much better and calmer about things now. Somehow talking it out, things are clearer. Steve knows of a pilot that fly's people to hospitals at no charge, he leaves the man a message asking for his help if we have an appointment in Memphis. Mom is sending me tons of research she and her friend Joan have done. Bobby offers me a soft comforting voice of reason and calm if I need him, anytime.
We are exhausted, Frank and Zack manage to eat dinner we picked up at BiLo's on the way home, we have no clean clothes so I start a load of laundry. All I can do is go online, read the research, I find a referral page on St. Judes website where the parents can fill in all the information, I do so and send it immediately, at least that way the information is there before the doctor can call!! I did something!! I helped!! I had some control!!! I sit down to write my journey in my blog. I received a lot of messages, emails and texts with people asking for details. I am too exhausted to call them all, too exhausted to eat, I simply write back..... for updates please read my blog, love you!! I don't have any more energy than that.
I visualize us in a year. Zack cancer free and cured!! Watching him cross the stage with all of his friends, and planning his future at Nashville Auto and Diesel school. I pour myself and glass of milk, goodnight everyone. Enjoy the little things, the little triumphs and miracles that have happened and continue to happen.
I text Nick (my nephew and recent graduate as a DO) and he calls me, just in the "nick" of time... I run out into the hall, I can't breathe, I can't collect myself, he asks if I'm there, I start to cry, his calming voice says It's okay Aunt Sabrina, it's okay. I don't understand? why are they telling us all of this, why not in the trial, why not realize that they just told my son, a young healthy young man that he can't play football, he can't go to school with his friends, he can't go to school in the afternoon to learn automotive (his true love). Do they not have feelings? Do they not realize that all he wants is to live life? He explains calmly why they are doing the tests, it all makes sense when he explains it, but for the life of me I can't remember a word of it. I am calmer, OK, we can do this, he is still in great shape, it still hasn't gone anywhere major, if anywhere at all, they just need to make sure, this could just be fluids... I think.. It's so hard to get excited, they keep pulling the rugs from under us. As I walk back into the room, I see a mother, her young daughter is in one of the treatment chairs, we make eye contact, she sees me wipe away my tears and looks at me with compassion. She was in my shoes not too long ago, she knows what I'm feeling, she is telling me to hang in there with her eyes. OK we can do this!!
I step back into the room and the nurse has finished showing Zack the procedure for the port. The nurse shows me and I am numb. They want to stick THAT inside my son? A boy that has had one surgery his entire life and that was to remove this fucking tumor ( I told you that word will show up). Why aren't THEY freaking out about this? Oh... They do this all the time, they are used to this, one day, I guess I too be used to this, Frank will be used to this, this will become a part of Zack's life for the next year, he will be used to the chemo, the needles, the tests..... it will be a part of all our lives. Everyone connected to us, we are all on this journey together. . We feel so much love from our friends all around the world. Doors are opening for us all around, and we must trust that the right treatment will be there for Zack.
We tell the Doctor that we will look into a second opinion as well, but will continue with the CT and bone scan tomorrow. We don't cancel the surgery for Thursday, one day at a time. We leave and decided to grab dinner at a local restaurant. From the car Frank calls a client and friend of ours. She says St. Judes... go nowhere else. They took care of her son and her. They can do the protocol, and they cover all expenses. Frank thanks her and snaps the cell phone closed, announces that we are going to St. Judes in Memphis. Zack and I freak out!!! We can't move there for a year, what about my friends Dad? My life is here Dad!!! I have to work too so we can pay the bills Frank, are you crazy? have you lost your mind? He steps out of the car to breathe ( I find out later that we scared the Hell out of him, he was trying to help and we are yelling at him in fear), this is all new to us all, we ask questions and get more questions, tests, fears... We are all doing the best we can. He gets back in the car, we can't eat, who can think of food at this time, not even me. We drive home, Zack falls asleep in the backseat, he is snoring he is so exhausted. I call St. Judes and ask what we need to do, she needs a referral from his doctor. I call his doctor, he has gone for the day, the nurse assures me he will call in the morning. I grab Franks hand, tell him we are a team and must be strong together.
We call our dear friend Lee ( family friend since before I was born). Auntie Lee, as I like to call her, is a tough, tell it like it is personality. My kind of people!!! Lee can help us, she knows people, her daughter lives in Boston and knows the hospital there, maybe she knows about St. Judes too.Lee's calming voice answers the phone. I tell her what all has happened, she is on speaker so Frank can hear too. She doesn't know much about them, but said that there is no reason to rush and make this decision in two days. If this was so urgent why then sent me on vacation for a week? I'm sure you have a couple more days to figure out the next step, contact St. Judes and see if this is an option. Go home, do research online, find out all you can on them. Frank gives a thumbs up. I am calmer, we will go home and research.
We decide to continue with the CT, but will hold off until we hear from St. Judes about the port insertion. No need to do that if St. Judes accepts us. I make my usual phone calls to Nancy, Mom and Bob. I had asked Nick if he could call his mother (my sister Rhonda) because he explained it all so well to me that he could do that for her. Nancy comes over to give her love and support. We feel so much better and calmer about things now. Somehow talking it out, things are clearer. Steve knows of a pilot that fly's people to hospitals at no charge, he leaves the man a message asking for his help if we have an appointment in Memphis. Mom is sending me tons of research she and her friend Joan have done. Bobby offers me a soft comforting voice of reason and calm if I need him, anytime.
We are exhausted, Frank and Zack manage to eat dinner we picked up at BiLo's on the way home, we have no clean clothes so I start a load of laundry. All I can do is go online, read the research, I find a referral page on St. Judes website where the parents can fill in all the information, I do so and send it immediately, at least that way the information is there before the doctor can call!! I did something!! I helped!! I had some control!!! I sit down to write my journey in my blog. I received a lot of messages, emails and texts with people asking for details. I am too exhausted to call them all, too exhausted to eat, I simply write back..... for updates please read my blog, love you!! I don't have any more energy than that.
I visualize us in a year. Zack cancer free and cured!! Watching him cross the stage with all of his friends, and planning his future at Nashville Auto and Diesel school. I pour myself and glass of milk, goodnight everyone. Enjoy the little things, the little triumphs and miracles that have happened and continue to happen.
Monday, July 16, 2012
The Best Possible Results!!!
I wake up this morning full of extra energy. My hands are shaking, I have been awake since 3 am. I can't sleep. Who could? Well Frank, but with the physical work he does it's easy. I get ready, staring at all my clothes and don't care what I put on. I find the most comfortable, easiest big black and white skirt. I need to have a no fuss outfit in case there is bad news. Yes, there is such a thing... at least in my mind (which can be a scary place sometimes). I go about my business, drop off the tax returns for Ruth to review, drop off the truck payment, I must stay focused on the tasks at hand so as not to go insane. Step one, two, three......
I make it to work just as Dr. Steve pulls in. He beat me to work, something that rarely happens. I am greeted by a warm and loving smile by both Doc and Atlas (our office mascot, a tiny little Pomeranian). I go in, turn on the lights, AC, computer, steps four, five, six..... We start greeting our patients. I smile, step seven..... hand them their folder step eight... and send them to the front room for their adjustments.. step nine... I KNOW I can make it until the Doctors office opens and we get our results from Friday's PET scan. My best friend walks in (Dr. Nancy) and greets me with her sweet smile, she knows me too well, I can't hide my emotions. I look at her and say "nothing yet", "it's going to be good news, I just know it is" she responds with confidence. I quickly email Mom, with "no news yet", as I know she is already awake staring at the phone waiting for it to ring. By this time I had already called Dr. Pollock's office for the results, "the nurses are not yet in, but they can tell me the results as soon as they get into the office."
We are busy, a really good thing, pretty soon I stop counting the steps and just am on auto pilot. It is 9:30, 10:00 I call the office again, The nurse says she hasn't received the results yet, but will call me as soon as she has them. I wait until 11:00 and call the Cancer Center in Asheville where the PET scan was performed. The kind man says, we faxed them over two times to Dr. Pollock. I said " I am a mother, this is my baby, I NEED to know the results", he assures me he understands and said for me to call the Doctor again. "IF they tell you they don't have it, you tell them to call ME!!!" I hang up, call Peggy, Dr. Pollock's sweet nurse and TELL her the she DOES have the results and PLEASE PLEASE tell me... She says she can't but the Doctor will call. I ask when? She says ASAP!! I tell her to call him again and tell him I am loosing it!! Freaking out!! Going out of my mind!!! She calms me and says she will call him again. (Dr. Pollock is VERY good about getting back to his patience, I just don't happen to have any.
Within minutes I receive a call on my cell phone... I run into the Exam room leaving an adorable red headed child at the front desk. I sit on the floor and Doc P. asks how I'm doing. I tell him it depends on what you have to tell me, He says "there is not evidence that the cancer has traveled" "there are a few spot around the incision , but the lungs, etc.. look very good." I shout THIS is a miracle!!! Oh my God!!! So what's next. He says firmly, we are not out of the woods yet, he MUST meet with the team in Asheville and start the chemotherapy protocol. I tell him about my husband reservations and are the Doctors prepared to answer his questions. He assures me they are and tells me he will follow up in a couple of weeks. They will be the primary care givers from this point on. I thank him and he wishes us well.
I am sitting in my full skirt ( told you it was the right outfit) on the floor, sobbing for what seems to be an eternity. This sobbing is relief, I can breath again, I can smile and mean it, My "baby" is going to be alright. We still have a journey ahead of us, but we can handle it. I call Frank and tell him the good news. He says "why are you crying? happy cry" I laugh and say "yes, I can finally cry a happy cry. " I can hear from his voice he is so relieved. He says okay what's next. I remind him that chemo is still on the table and tomorrow's meeting will determine the next step. I call Zack and tell him, he is like "okay, hey can I borrow the car today?" Thank God he doesn't fully realize the impact, or maybe he's just very clever at hiding it. (of course he got the car!)
I finally come out of the room and am greeted by my sweet little red headed patient. She knows about cancer having gone through this twice with her family. She looks at me and says are those happy tears? I give her a big hug and say "the happiest". She smiles her adorable smile right back at me. I go in the hall, Doc Nancy looks up at me, I give her a BIG thumbs up!! She comes running into her office, followed by Doc Steve and we all just stand there hugging each other with relief and joy!!! Nancy hands me the phone and says call anyone you need to, call your mom (of course I already had, she was out walking her baby Bijou, but when she returned Bobby had the good news for her). Mom returned my call and was in tears, I swear she was ready to faint, she could barely breathe!! I worry she is taking this so hard, but I can't make her feel better, I can't even do that for myself lately. As Bobby says, we are a family of "fixers" and this one... WE can't fix, so we have to rely on others to take care of Zack. As I come out of the office another sweet face greets me at the front door, it's Jessica my co worker and dear friend. She has come in with her adorable three children for their family adjustment. I tell her the good news and she is in tears, another group hug and the inner office circle is complete.
Today's modern technology makes it easy for me to reach out to everyone all at once. I text, call, email and FB family and friends during lunch. Docs Steve, Nancy and myself are sitting at our favorite table under the tress at our local Mexican restaurant, looking at each other and smiling. We all know this is a blessing, a miracle !! We are ready for the next miracle.
I make it to work just as Dr. Steve pulls in. He beat me to work, something that rarely happens. I am greeted by a warm and loving smile by both Doc and Atlas (our office mascot, a tiny little Pomeranian). I go in, turn on the lights, AC, computer, steps four, five, six..... We start greeting our patients. I smile, step seven..... hand them their folder step eight... and send them to the front room for their adjustments.. step nine... I KNOW I can make it until the Doctors office opens and we get our results from Friday's PET scan. My best friend walks in (Dr. Nancy) and greets me with her sweet smile, she knows me too well, I can't hide my emotions. I look at her and say "nothing yet", "it's going to be good news, I just know it is" she responds with confidence. I quickly email Mom, with "no news yet", as I know she is already awake staring at the phone waiting for it to ring. By this time I had already called Dr. Pollock's office for the results, "the nurses are not yet in, but they can tell me the results as soon as they get into the office."
We are busy, a really good thing, pretty soon I stop counting the steps and just am on auto pilot. It is 9:30, 10:00 I call the office again, The nurse says she hasn't received the results yet, but will call me as soon as she has them. I wait until 11:00 and call the Cancer Center in Asheville where the PET scan was performed. The kind man says, we faxed them over two times to Dr. Pollock. I said " I am a mother, this is my baby, I NEED to know the results", he assures me he understands and said for me to call the Doctor again. "IF they tell you they don't have it, you tell them to call ME!!!" I hang up, call Peggy, Dr. Pollock's sweet nurse and TELL her the she DOES have the results and PLEASE PLEASE tell me... She says she can't but the Doctor will call. I ask when? She says ASAP!! I tell her to call him again and tell him I am loosing it!! Freaking out!! Going out of my mind!!! She calms me and says she will call him again. (Dr. Pollock is VERY good about getting back to his patience, I just don't happen to have any.
Within minutes I receive a call on my cell phone... I run into the Exam room leaving an adorable red headed child at the front desk. I sit on the floor and Doc P. asks how I'm doing. I tell him it depends on what you have to tell me, He says "there is not evidence that the cancer has traveled" "there are a few spot around the incision , but the lungs, etc.. look very good." I shout THIS is a miracle!!! Oh my God!!! So what's next. He says firmly, we are not out of the woods yet, he MUST meet with the team in Asheville and start the chemotherapy protocol. I tell him about my husband reservations and are the Doctors prepared to answer his questions. He assures me they are and tells me he will follow up in a couple of weeks. They will be the primary care givers from this point on. I thank him and he wishes us well.
I am sitting in my full skirt ( told you it was the right outfit) on the floor, sobbing for what seems to be an eternity. This sobbing is relief, I can breath again, I can smile and mean it, My "baby" is going to be alright. We still have a journey ahead of us, but we can handle it. I call Frank and tell him the good news. He says "why are you crying? happy cry" I laugh and say "yes, I can finally cry a happy cry. " I can hear from his voice he is so relieved. He says okay what's next. I remind him that chemo is still on the table and tomorrow's meeting will determine the next step. I call Zack and tell him, he is like "okay, hey can I borrow the car today?" Thank God he doesn't fully realize the impact, or maybe he's just very clever at hiding it. (of course he got the car!)
I finally come out of the room and am greeted by my sweet little red headed patient. She knows about cancer having gone through this twice with her family. She looks at me and says are those happy tears? I give her a big hug and say "the happiest". She smiles her adorable smile right back at me. I go in the hall, Doc Nancy looks up at me, I give her a BIG thumbs up!! She comes running into her office, followed by Doc Steve and we all just stand there hugging each other with relief and joy!!! Nancy hands me the phone and says call anyone you need to, call your mom (of course I already had, she was out walking her baby Bijou, but when she returned Bobby had the good news for her). Mom returned my call and was in tears, I swear she was ready to faint, she could barely breathe!! I worry she is taking this so hard, but I can't make her feel better, I can't even do that for myself lately. As Bobby says, we are a family of "fixers" and this one... WE can't fix, so we have to rely on others to take care of Zack. As I come out of the office another sweet face greets me at the front door, it's Jessica my co worker and dear friend. She has come in with her adorable three children for their family adjustment. I tell her the good news and she is in tears, another group hug and the inner office circle is complete.
Today's modern technology makes it easy for me to reach out to everyone all at once. I text, call, email and FB family and friends during lunch. Docs Steve, Nancy and myself are sitting at our favorite table under the tress at our local Mexican restaurant, looking at each other and smiling. We all know this is a blessing, a miracle !! We are ready for the next miracle.
Saturday, July 14, 2012
Weekend without the "C" word!!
My wish for you all, is this kind of weekend too. No worries, no fears, thinking about what show/s to watch, where to go and have fun, and how beautiful the rain has made everything. We are all blessed ( yes for lack of better word, I over use it.. deal!!!) and can make this weekend anything we want it to be.
Wish... and it is so... Have a great weekend! Hugs and Kisses to all!!!
Friday, July 13, 2012
"Remember to breathe"
I wake up at 8AM, anxious for this day to be over and yet it just started. I try not to "wish" my life away, but I can't help but feel that way today. I get ready for my Doctors appointment, (right now estrogen and progesterone are my friends...and those that live with me are glad..Ha Ha ) sneak a bowl of cereal (Zack has not been allowed to eat since last night) and go in to tell him what to wear for the test. He is grouchy, hungry and asked for more information about the procedure. I tell him the doctor says it is not as bad as the MRI and he did great there so there is nothing to worry about. I tell him they will put in an IV. He then gets mad and buries himself in his pillow. He mutters "I HATE HOSPITALS!!!". My first instinct is to hold him and coddle him like I did when he was little, but I know I must be tough with myself and him. I tell him that I totally understand his feelings, but he must also realize that these people are here to save his life, and he must see the good in what is being done, not the bad. " We are having this scan to show that everything is gone". He mutters, and assures me he is just hungry and hates needles. I give him a hug and go to my appointment.
When I return to pick him up, he is dressed and ready to go. His mood is better and he is ready to get the scan over with... so he can eat... He says "you owe me MEAT!!!, I want to eat at the steak house in Biltmore", we both laugh and I promise him linner (lunch and dinner) after the scan. On the way ( a 45 minute drive to Asheville from Brevard),we are joking about the "meat" comment.. I tease him about a nice juicy hamburger and he just laughs. I tell him I have to be my usual obnoxious self or he would think me an imposter. He spots one of his favorite stores, "they have the horn I need for my truck Mom" I again promise to stop at the store on the way back. Just for today, right or wrong, I would promise him the moon.
The PET scan started at 1 PM and ended at 3:45PM. It started (surprise) with paperwork. We find out right away that the results will not be ready until Monday. I ask if there is any way they can do it before, but the technician tells me he is NOT the one that reads the scan. I am resigned and accept, still hoping they will tell me after it is all done. After about 15 minutes a very nice man came to the waiting room and escorted Zack to the back room. Rhonda (my sister) had insisted on staying with me. I am known for being stubborn and I in turn insisted I didn't NEED company, but was glad she didn't listen to me, it helped pass the time and we did have a lot of catching up to do.
The Cancer Center is actually a beautiful new building. With tile floors, fancy comfortable chairs and glass top tables. There is a boutique with nothing but snacks and "cancer" related items. Bandanas, scarfs, "save the ta tas" t-shirts, "we can beat this" hats, anything else you can think of. All of a sudden it hits me, THIS is where we are right now, we are one of "them" . I guess when Mom had Kidney cancer, it happened so fast, the diagnosis, surgery and recovery without Chemo, that it never hit me like this. As we sit talking, I see women, men and small children with no hair returning to their cars after their treatments. Is this going to be us? Will we be the family that "others" are looking at with sad eyes? I don't want my son to be pitied, I don't want people to feel sorry for us. We need the Love and support we are so blessed to have. I talk to Rhonda about our future. I know this will not be forever, and yet I know that I have finally figured out where I can volunteer when this is all over. I have been looking for a place to volunteer some of my time to help others, I feel good about where this will lead me, I will not be afraid of this disease, I will be able to offer some type of help to others that will be going through the same experiences. But that.. is for later. Now my son and husband need me 100 percent. This is bringing back so many sad and scary memories for Frank who's mother survived Ovarian cancer only to have lost her battle with Leukemia in 2007.
Zack comes out of the scan all smiles. First thing out of his mouth is "FOOD" .... As we are walking to the car I ask for his experience. Zack tells me he was given an IV ( the guy missed his vein twice, so that part wasn't too pleasant, Zack already hates needles) with a small amount of radioactive material (tracer). This tracer is given through a vein, usually on the inside of your elbow. It travels through your blood and collects in organs and tissues. The tracer helps the radiologist see certain areas or diseases more clearly. He said that he was given a massage chair, he LOVED that part, he said it was warm and he could set it to whatever settings he wanted. He had to sit for 60 minutes for the fluid to go where they needed to go. He was telling me how wonderful the massage chair was, he was sitting back and almost asleep when all of a sudden the man came in to take him in for the scan. He said is really wasn't as bad as he thought it would be, but was relieved when it was over.
We go out to eat, he flirts with the server as she keeps the wonderful rolls coming. We tell her he hasn't eaten since last night, so he is playing catch up. She offers him more rolls, I tease and say " I think you just met your future wife", we all have a good laugh (she is probably 20 and too old Ha Ha) and he again thanks me for embarrassing him. I remind him that's what I'm here for... We say goodby to "Tante", (Aunt in Flemish) and stop at his favorite store. He picks out the horn for his truck, I, of course, find a couple of "gadgets" for Frank and we head home to another surprise. Our dear friends Hans and his wife Andrea are there waiting to visit from Cary, NC. Zack gives his hugs and taking my car heads out to spend the night at his friends house.
All in all it's been a good day. The journey continues, we KNOW the results will be good on Monday, and Tuesday will move forward with the "plan" with the team of Doctors, whatever that will be. The Love, Positive Energy, Prayers and Support are so amazing I go to bed feeling like we are surrounded by the most wonderful light. Thank you for our many blessings!!!
When I return to pick him up, he is dressed and ready to go. His mood is better and he is ready to get the scan over with... so he can eat... He says "you owe me MEAT!!!, I want to eat at the steak house in Biltmore", we both laugh and I promise him linner (lunch and dinner) after the scan. On the way ( a 45 minute drive to Asheville from Brevard),we are joking about the "meat" comment.. I tease him about a nice juicy hamburger and he just laughs. I tell him I have to be my usual obnoxious self or he would think me an imposter. He spots one of his favorite stores, "they have the horn I need for my truck Mom" I again promise to stop at the store on the way back. Just for today, right or wrong, I would promise him the moon.
The PET scan started at 1 PM and ended at 3:45PM. It started (surprise) with paperwork. We find out right away that the results will not be ready until Monday. I ask if there is any way they can do it before, but the technician tells me he is NOT the one that reads the scan. I am resigned and accept, still hoping they will tell me after it is all done. After about 15 minutes a very nice man came to the waiting room and escorted Zack to the back room. Rhonda (my sister) had insisted on staying with me. I am known for being stubborn and I in turn insisted I didn't NEED company, but was glad she didn't listen to me, it helped pass the time and we did have a lot of catching up to do.
The Cancer Center is actually a beautiful new building. With tile floors, fancy comfortable chairs and glass top tables. There is a boutique with nothing but snacks and "cancer" related items. Bandanas, scarfs, "save the ta tas" t-shirts, "we can beat this" hats, anything else you can think of. All of a sudden it hits me, THIS is where we are right now, we are one of "them" . I guess when Mom had Kidney cancer, it happened so fast, the diagnosis, surgery and recovery without Chemo, that it never hit me like this. As we sit talking, I see women, men and small children with no hair returning to their cars after their treatments. Is this going to be us? Will we be the family that "others" are looking at with sad eyes? I don't want my son to be pitied, I don't want people to feel sorry for us. We need the Love and support we are so blessed to have. I talk to Rhonda about our future. I know this will not be forever, and yet I know that I have finally figured out where I can volunteer when this is all over. I have been looking for a place to volunteer some of my time to help others, I feel good about where this will lead me, I will not be afraid of this disease, I will be able to offer some type of help to others that will be going through the same experiences. But that.. is for later. Now my son and husband need me 100 percent. This is bringing back so many sad and scary memories for Frank who's mother survived Ovarian cancer only to have lost her battle with Leukemia in 2007.
Zack comes out of the scan all smiles. First thing out of his mouth is "FOOD" .... As we are walking to the car I ask for his experience. Zack tells me he was given an IV ( the guy missed his vein twice, so that part wasn't too pleasant, Zack already hates needles) with a small amount of radioactive material (tracer). This tracer is given through a vein, usually on the inside of your elbow. It travels through your blood and collects in organs and tissues. The tracer helps the radiologist see certain areas or diseases more clearly. He said that he was given a massage chair, he LOVED that part, he said it was warm and he could set it to whatever settings he wanted. He had to sit for 60 minutes for the fluid to go where they needed to go. He was telling me how wonderful the massage chair was, he was sitting back and almost asleep when all of a sudden the man came in to take him in for the scan. He said is really wasn't as bad as he thought it would be, but was relieved when it was over.
We go out to eat, he flirts with the server as she keeps the wonderful rolls coming. We tell her he hasn't eaten since last night, so he is playing catch up. She offers him more rolls, I tease and say " I think you just met your future wife", we all have a good laugh (she is probably 20 and too old Ha Ha) and he again thanks me for embarrassing him. I remind him that's what I'm here for... We say goodby to "Tante", (Aunt in Flemish) and stop at his favorite store. He picks out the horn for his truck, I, of course, find a couple of "gadgets" for Frank and we head home to another surprise. Our dear friends Hans and his wife Andrea are there waiting to visit from Cary, NC. Zack gives his hugs and taking my car heads out to spend the night at his friends house.
All in all it's been a good day. The journey continues, we KNOW the results will be good on Monday, and Tuesday will move forward with the "plan" with the team of Doctors, whatever that will be. The Love, Positive Energy, Prayers and Support are so amazing I go to bed feeling like we are surrounded by the most wonderful light. Thank you for our many blessings!!!
Wednesday, July 11, 2012
What is a PET scan?
Positron Emission Tomography (PET) and Computed Tomography (CT) imaging have become essential diagnostic tools physicians use to reveal the presence and severity of cancers. PET/CT imaging helps physicians detect cancer, evaluate the extent of disease, select the most appropriate treatments, determine if the therapy is working, and detect any recurrent tumors. The purpose of the scan for Zack is to determine if anything has traveled anywhere else in the body. The MRI showed that everything was removed where the tumor was located and the blood work also showed that this blood count is very good.
Before a PET/CT scan, the patient receives an intravenous injection of radioactive glucose. Many cancer cells are highly metabolic and rapidly synthesize the radioactive glucose. Information regarding the location of abnormal levels of radioactive glucose obtained from the whole-body PET/CT scan helps physicians effectively pinpoint the source of cancer and detect whether cancer is isolated to one specific area or has spread to other organs. At this time, Zack is more upset about not eating for several hours before. He thinks he will starve by the time this is all finished. He is also a bit apprehensive about being in the small space and having to sit still for so long.
During the course of treatment, the information from the PET/CT scan allows physicians to monitor the effectiveness of cancer therapies and provides physicians with the opportunity to change the treatment strategy if it is not working, avoiding the cost and discomfort of ineffective therapeutic procedures.
After completing the treatment regimen, a follow-up whole-body PET/CT scan can provide information to assess if the treatment was successful and if areas that were previously abnormally metabolically active have responded. Often, scar tissue at the site of surgical resection or radiation treatment may appear as an abnormality on the CT scan. The PET portion of the PET/CT scan can detect residual disease within the scar tissue and indicate if the treatment was successful or if the tumor has returned.
PET/CT scans provide information to help physicians:
- Locate the site of the cancer
- Determine the size of the tumor
- Differentiate benign from malignant growths
- Discover if the cancer has spread
- Select treatments that are likely to be appropriate
- Monitor the success of therapy
The "Outsiders"?
It came to me in the middle of the night like a bolt of lightening. Actually, it was "approprie" as I was awakened by a large thunder storm. I have been running around telling everyone everything was fine, going smoothly, and we had all our angels around us when needed. SO very true, every word of it!! But on the inside? " I'm fucking freaking out!!! sorry, those of you who know me well, are probably surprised that word hasn't shown up until now.
I came to realize that I have been taking my frustrations out on "outsiders".. those whom I do not have a personal relationship with. But are there really outsiders? Not really. We are all trying to survive, battling our own demons, at time just trying to make it through another day, sleep another night without waking up in fear or panic about something we can't control. I yelled at the Doctors nurses because they couldn't get my mothers prescription right for the third month in a row, the pharmacist because he couldn't fix it for me, the cashier because she didn't want to fix it for me, then the insurance agent (three weeks after my initial requests) who was not taking my concern seriously enough when told my house insurance would not even cover my mortgage, the eye doctors staff because they are more busy learning the new computer system than ordering my sons contact lenses, which was requested two weeks ago, only to find out they ordered them and didn't feel a call was warranted.
I knew what I was going through, even know the fear of my husband, son and mother whom adores her grandson and hates that he is even going through any of this. But what are these "outsiders" going through. Just last week I "thought" I was becoming more compassionate, and yet I am so embarrassed at my treatment of others this past week. Am I justified in being angry and frustrated with their apparent lack of customer service, yes. But.. Am I justified in treating them as if they were less than human? NO!!! I woke up wanting to send them all flowers and a note of apology. Since that would be overboard, I am simply going to forgive myself, and make sure that my next interactions with "outsiders" is kind and compassionate. Explain in a calm, loving manner what I need and KNOW that they are going to take care of us. If I find the need to yell, punch or scream.. My son has a great punching bag and we live in the mountains so I can yell and scream at the sky!!!
Here's to all the "outsiders" in our lives, may they one day become our friends.
I came to realize that I have been taking my frustrations out on "outsiders".. those whom I do not have a personal relationship with. But are there really outsiders? Not really. We are all trying to survive, battling our own demons, at time just trying to make it through another day, sleep another night without waking up in fear or panic about something we can't control. I yelled at the Doctors nurses because they couldn't get my mothers prescription right for the third month in a row, the pharmacist because he couldn't fix it for me, the cashier because she didn't want to fix it for me, then the insurance agent (three weeks after my initial requests) who was not taking my concern seriously enough when told my house insurance would not even cover my mortgage, the eye doctors staff because they are more busy learning the new computer system than ordering my sons contact lenses, which was requested two weeks ago, only to find out they ordered them and didn't feel a call was warranted.
I knew what I was going through, even know the fear of my husband, son and mother whom adores her grandson and hates that he is even going through any of this. But what are these "outsiders" going through. Just last week I "thought" I was becoming more compassionate, and yet I am so embarrassed at my treatment of others this past week. Am I justified in being angry and frustrated with their apparent lack of customer service, yes. But.. Am I justified in treating them as if they were less than human? NO!!! I woke up wanting to send them all flowers and a note of apology. Since that would be overboard, I am simply going to forgive myself, and make sure that my next interactions with "outsiders" is kind and compassionate. Explain in a calm, loving manner what I need and KNOW that they are going to take care of us. If I find the need to yell, punch or scream.. My son has a great punching bag and we live in the mountains so I can yell and scream at the sky!!!
Here's to all the "outsiders" in our lives, may they one day become our friends.
Monday, July 9, 2012
Back to reality...
We had a wonderful relaxing vacation at Jekyll Island, Ga. For a few days we could "forget" what has happened in the past three weeks. Zack's leg is healing beautifully and his energy is back. He was spending a lot of time sleeping, but I know that was more fear based than anything. This kid is healthy. He works with Frank lifting a ton of rocks, rides his bike, swims, does pretty much the "norm" for a typical 16 year old.
I have wanted to hide, stay in bed and hide under the covers until someone told me it was a crappy dream. But we can't, we have to be tough, why do you think my nickname is warrior? It is a name I chose for myself years ago without really thinking about the reasoning behind it. It seemed to suit me, my life and my resolve in what I was here to learn this time around. So I am resolute in not allowing fear to take over. I am done with fear. Thankfully I have been learning how to handle fear and know the difference between my inner voice and fear. I see a wonderful Physiotherapist / acupuncturist. What a blessing he is to be in our lives. He has taught me how to handle what is thrown my way and be grateful for the experience I am being taught. To look at it as part of life's journey. Pain as well as Peace are a part of life and can, if we allow it to, make us better people.
I already see even more compassion in Zack and he is a pretty caring kid already. We just returned from vacation and he discovered while we were gone one of his very good friends was involved in a bike accident. A truck (driven by another friend) struck the front of the bike as it was sticking out in the road, and he was thrown, no helmet. Broken shoulder, head gash and jaw now wired shut, He is looking at months of rehabilitation and facial reconstruction. The first thing Zack did when he found out was go and visit, call me and ask what we can do to help him. He isn't thinking about what he is going to go through, he is more concerned for his friend.
We have the PET scan this Friday and I re-scheduled the Oncologist ( Protocol ) visit for next week Tuesday. It didn't make sense to meet with the team until after we have all of the tests completed. I will of course keep everyone posted as we get information. Thank you so much for all your sweet messages, calls and emails. We feel so loved and always have!!! We have one hell of a support team!!!
I have wanted to hide, stay in bed and hide under the covers until someone told me it was a crappy dream. But we can't, we have to be tough, why do you think my nickname is warrior? It is a name I chose for myself years ago without really thinking about the reasoning behind it. It seemed to suit me, my life and my resolve in what I was here to learn this time around. So I am resolute in not allowing fear to take over. I am done with fear. Thankfully I have been learning how to handle fear and know the difference between my inner voice and fear. I see a wonderful Physiotherapist / acupuncturist. What a blessing he is to be in our lives. He has taught me how to handle what is thrown my way and be grateful for the experience I am being taught. To look at it as part of life's journey. Pain as well as Peace are a part of life and can, if we allow it to, make us better people.
I already see even more compassion in Zack and he is a pretty caring kid already. We just returned from vacation and he discovered while we were gone one of his very good friends was involved in a bike accident. A truck (driven by another friend) struck the front of the bike as it was sticking out in the road, and he was thrown, no helmet. Broken shoulder, head gash and jaw now wired shut, He is looking at months of rehabilitation and facial reconstruction. The first thing Zack did when he found out was go and visit, call me and ask what we can do to help him. He isn't thinking about what he is going to go through, he is more concerned for his friend.
We have the PET scan this Friday and I re-scheduled the Oncologist ( Protocol ) visit for next week Tuesday. It didn't make sense to meet with the team until after we have all of the tests completed. I will of course keep everyone posted as we get information. Thank you so much for all your sweet messages, calls and emails. We feel so loved and always have!!! We have one hell of a support team!!!
Wednesday, July 4, 2012
Happy Independance Day!
We wake up to a beautiful day. The sun is shining directly into our room and though it is already hot outside, it feels good to feel the sea air and listen to the calmness of the waves. Mom is already out ( at 7 am ) walking her precious little bundle of energy (Bijou). The boys are asleep all over the room (with legs and arms proving a tripping hazard if not careful ). I look around and feel so blessed. Here we are in a nice room at the beach and a chance to have some fun and create more memories.
I wake up thinking about what all has happened in the past three weeks. It hit me late last night, and luckily the boys were out girl chasing (NOT... or ???? YIKES). I lost it, Mom is there to remind me it's okay to loose it and let it go. It's not good to hold it in.
I am reminded of her Journey with Dad, the broken ankle, the kidney cancer she so calmly handled and then 10 days later a broken back. At 80 years old this woman is the toughest woman I know ( I used to think it was my grandmother, but Meme.... you lead a charmed life compared to your daughter I hope you are up there singing her praises). I realize how I "knew" what she was going through and yet didn't have a clue! How could I? It's easy to be supportive, to be there, but the phrase "until you walk in a mans shoes" is so true. I think of my best friends Nancy and Steve. I was there with them when their daughter had her car accident, I have been there all along, to Love, Support, Encourage and yes even get angry at the circumstances life can throw as a result of the accident... But I didn't have a clue, not really. I have a new empathy that was never there before. If this is the one thing that I needed to learn from this, then it will make me a better person. I now look at people with different eyes. What are they going through, are they mean because they are in pain? are they sad because of life's pain? Are the smiling because they survived a tough time and are rejoicing? THAT will be us again. Every time we make it though another stumble, we are laughing with our friends and loved ones. We are blessed because we make it through another day and hope that we have learned along the way,
I am ready to go out there, get a tan (safely of course SPF 70) and play in the ocean with my entourage. I wish you all an amazing day, full of fireworks and fun.
Love and Peace!!
I wake up thinking about what all has happened in the past three weeks. It hit me late last night, and luckily the boys were out girl chasing (NOT... or ???? YIKES). I lost it, Mom is there to remind me it's okay to loose it and let it go. It's not good to hold it in.
I am reminded of her Journey with Dad, the broken ankle, the kidney cancer she so calmly handled and then 10 days later a broken back. At 80 years old this woman is the toughest woman I know ( I used to think it was my grandmother, but Meme.... you lead a charmed life compared to your daughter I hope you are up there singing her praises). I realize how I "knew" what she was going through and yet didn't have a clue! How could I? It's easy to be supportive, to be there, but the phrase "until you walk in a mans shoes" is so true. I think of my best friends Nancy and Steve. I was there with them when their daughter had her car accident, I have been there all along, to Love, Support, Encourage and yes even get angry at the circumstances life can throw as a result of the accident... But I didn't have a clue, not really. I have a new empathy that was never there before. If this is the one thing that I needed to learn from this, then it will make me a better person. I now look at people with different eyes. What are they going through, are they mean because they are in pain? are they sad because of life's pain? Are the smiling because they survived a tough time and are rejoicing? THAT will be us again. Every time we make it though another stumble, we are laughing with our friends and loved ones. We are blessed because we make it through another day and hope that we have learned along the way,
I am ready to go out there, get a tan (safely of course SPF 70) and play in the ocean with my entourage. I wish you all an amazing day, full of fireworks and fun.
Love and Peace!!
Tuesday, July 3, 2012
Beach, here we come
Having received the okay from the doctor, and the good news last week, we decided to continue with our planned trip to Jekyll Island, Ga.. ( In 1886, Jekyll Island was purchased to become an exclusive winter
retreat for America's most elite families, known as the Jekyll Island
Club. For more than half a century, the nation's leading families,
including the Rockefeller s, Morgans, Pulitzer s, and Gould s came to
Jekyll Island "to secure an escape.") Now a small community of 300 invites us "tourists" every year. My best friend, Nancy introduced me to the Island five years ago and I immediately fell in love with it's history, charm, turtle sanctuary and peacefulness. Yes, even in the summer.
Zack invited his friend Chris, and Mom brought her beloved Bijou (Frank had to work), so we will partake in a lot of rest, peace and fun. I'm sure the boys (being typical 16 year old) will check out the young ladies in bikinis. Our spirits are strong and though we know next week will be when we find out the next steps, we are ready!
Thank you for all the loving emails, notes and messages. We are so blessed to have such an amazing support system and feel your Love and Positive Energy.
Have an awesome week (will post more photos of our vacation later on). This one is kind of scary, but we did just arrive from a 7 hour trip. LOL. Hugs!!!
Zack invited his friend Chris, and Mom brought her beloved Bijou (Frank had to work), so we will partake in a lot of rest, peace and fun. I'm sure the boys (being typical 16 year old) will check out the young ladies in bikinis. Our spirits are strong and though we know next week will be when we find out the next steps, we are ready!
Thank you for all the loving emails, notes and messages. We are so blessed to have such an amazing support system and feel your Love and Positive Energy.
Monday, July 2, 2012
Answering your questions
We have been met with several questions and thought it would help to clarify.
The clinical trial "protocol" ( Novel Combination Chemotherapy for Localized Ewing Sarcoma) is in Phase III. What does that mean? There are several phases to protocols. You must complete one phase before moving on to the next. Phase I must prove that it is safe. Phase II must prove that it is the same as the treatment that is currently available. Phase III must prove that it is better than the current treatment available.
Why do the trial and not go to a "specialist" ? IF for some reason another surgery is needed, we will indeed go to Boston or Houston for surgery. We will not handle that locally. We are blessed that the surgery to remove the cyst went so smoothly and that the surgeon was able to remove everything, but we won't push our luck. Since the trial offers the same treatment or better as the specialists, we feel comfortable with that course of action.
Why not do alternative treatment in Tijuana, Mexico, I will have to quote Zack on that one, "the only thing I want from Tijuana is booze and hookers," Like I said he has a sense of humor, twisted at times..... like his mothers. (hey he is a 16 year old with hormones). We totally appreciate alternative treatments, just not in this case.
When does he start chemotherapy? and how long? That is yet to be determined. We will know all the details when we visit the team of Doctors next week, and have the PET scan results. We are hoping that we don't have to have it for the full year since the MRI and blood work came out so well.
How are his friends handling all of this? Zack has an amazing group of friends. They are rallying around him and though he doesn't talk about it much (he's actually tired of hearing about it) they have all come to me or Frank at one point or another and discussed what to expect. These kids remember a young senior girl that passed away from cancer four years ago, and I remind them that this case is very different. Every case is different.
What are you telling him? We are telling him everything. This is his body, his life and he deserves to know every step of the way. Yes, we still are in charge and responsible for his well being, but it is up to him to understand what is happening and what to expect. "We" tend to forget that he is still just 16, due to his size (6'5") but he still has fears, just like any of us would. We are telling him to keep the language and thoughts positive. You do not HAVE anything... you had... and it is now gone...
What is the best advise he has received? I have to give that one to his Uncle Bob "milk it, milk it for everything you can get out of it", unfortunately Uncle Bob doesn't realize that Zack LOVES a lot of his collectables. HA HA...
What can we do? Pray, Pray and Pray... I have never stopped believing in prayer. Don't throw religion at us, please. Prayer know no boundaries. Keep the language positive, words are very powerful. We KNOW and FEEL all the love and are so appreciative for your emails, notes, and phone calls.
The clinical trial "protocol" ( Novel Combination Chemotherapy for Localized Ewing Sarcoma) is in Phase III. What does that mean? There are several phases to protocols. You must complete one phase before moving on to the next. Phase I must prove that it is safe. Phase II must prove that it is the same as the treatment that is currently available. Phase III must prove that it is better than the current treatment available.
Why do the trial and not go to a "specialist" ? IF for some reason another surgery is needed, we will indeed go to Boston or Houston for surgery. We will not handle that locally. We are blessed that the surgery to remove the cyst went so smoothly and that the surgeon was able to remove everything, but we won't push our luck. Since the trial offers the same treatment or better as the specialists, we feel comfortable with that course of action.
Why not do alternative treatment in Tijuana, Mexico, I will have to quote Zack on that one, "the only thing I want from Tijuana is booze and hookers," Like I said he has a sense of humor, twisted at times..... like his mothers. (hey he is a 16 year old with hormones). We totally appreciate alternative treatments, just not in this case.
When does he start chemotherapy? and how long? That is yet to be determined. We will know all the details when we visit the team of Doctors next week, and have the PET scan results. We are hoping that we don't have to have it for the full year since the MRI and blood work came out so well.
How are his friends handling all of this? Zack has an amazing group of friends. They are rallying around him and though he doesn't talk about it much (he's actually tired of hearing about it) they have all come to me or Frank at one point or another and discussed what to expect. These kids remember a young senior girl that passed away from cancer four years ago, and I remind them that this case is very different. Every case is different.
What are you telling him? We are telling him everything. This is his body, his life and he deserves to know every step of the way. Yes, we still are in charge and responsible for his well being, but it is up to him to understand what is happening and what to expect. "We" tend to forget that he is still just 16, due to his size (6'5") but he still has fears, just like any of us would. We are telling him to keep the language and thoughts positive. You do not HAVE anything... you had... and it is now gone...
What is the best advise he has received? I have to give that one to his Uncle Bob "milk it, milk it for everything you can get out of it", unfortunately Uncle Bob doesn't realize that Zack LOVES a lot of his collectables. HA HA...
What can we do? Pray, Pray and Pray... I have never stopped believing in prayer. Don't throw religion at us, please. Prayer know no boundaries. Keep the language positive, words are very powerful. We KNOW and FEEL all the love and are so appreciative for your emails, notes, and phone calls.
Sunday, July 1, 2012
And the anger hits us.....
Rough day. I guess we were keeping so busy in the morning we didn't realize what we were trying to avoid...reality. As the day progresses, we get more and more testy. The slightest thing sets us all off. Everything is overwhelming today. Frank runs around the house looking for his book, I start to laugh and take a picture of him as it is under his arm the whole time, then I realize he looks confused, how did he not realize the book was there? Simple... we are all in a fog. I suddenly feel bad about laughing at him and make sure he is okay. He admits he is scared and worried. He hopes that because of the good news they won't do the chemotherapy, but I know they must still do that, even if it's a little bit, there could be something even if it's a tiny bit, and we need to make sure we get it all. I decide not to re -tell him, he will be reminded soon enough when we meet with the team. I was so glad he went fishing this morning, that helps him process things better, and he is sharing with his fishing buddies, which is huge, he usually keeps his feelings bottled up.
I can't concentrate on anything but simple house cleaning. Even the bookkeeping seems to take me forever, so I just stop and give up until after the trip. Zack comes home from spending the night at his friends and is in a bad mood. He starts to open up a bit, which is huge.. He tends to take after his father and keep his feelings to himself. Some of the realities of what he is in for hit him. What about a future with children? What about loosing his hair? He loves his hair. What about throwing up, he hates to throw up. I try and tell him to take it a day at time, sometimes one minute at a time. Not everyone gets so sick or looses their hair, there are so ways to have a family. I tell him how special he is to us and so many people. I remind him that we caught this early and as Nick (my nephew) advised me earlier this week, Attitude is 2/3 part of the healing and the treatment is 1/3. Stay positive! It's okay to get pissed off, that too is healthy, but don't stay in that place for very long. We had a long good discussion and I'm hoping that I was could at least offer a little comfort. I remind him of Forrest, a young man in the extended family that has been through this recently and wants to be there for Zack to help him through the treatments. He seems to feel a bit better and of course as he does, so do we.
I'm glad this day has ended. It was a shitty day for sure, but there is always tomorrow. Oh yeah, did I mention my glasses flew out the window of my car of my dash never to be seen again. Yeah, well... they're just a pair of glasses and luckily I have a backup pair. Material crap doesn't mean a thing, when your child is in pain. The lessons are already starting, and I feel blessed.
I can't concentrate on anything but simple house cleaning. Even the bookkeeping seems to take me forever, so I just stop and give up until after the trip. Zack comes home from spending the night at his friends and is in a bad mood. He starts to open up a bit, which is huge.. He tends to take after his father and keep his feelings to himself. Some of the realities of what he is in for hit him. What about a future with children? What about loosing his hair? He loves his hair. What about throwing up, he hates to throw up. I try and tell him to take it a day at time, sometimes one minute at a time. Not everyone gets so sick or looses their hair, there are so ways to have a family. I tell him how special he is to us and so many people. I remind him that we caught this early and as Nick (my nephew) advised me earlier this week, Attitude is 2/3 part of the healing and the treatment is 1/3. Stay positive! It's okay to get pissed off, that too is healthy, but don't stay in that place for very long. We had a long good discussion and I'm hoping that I was could at least offer a little comfort. I remind him of Forrest, a young man in the extended family that has been through this recently and wants to be there for Zack to help him through the treatments. He seems to feel a bit better and of course as he does, so do we.
I'm glad this day has ended. It was a shitty day for sure, but there is always tomorrow. Oh yeah, did I mention my glasses flew out the window of my car of my dash never to be seen again. Yeah, well... they're just a pair of glasses and luckily I have a backup pair. Material crap doesn't mean a thing, when your child is in pain. The lessons are already starting, and I feel blessed.
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