Tuesday, July 31, 2012

Day One... COMPLETE!!!

Installing the IV into the port.
 We wake up at 6:30 am, which for Frank and I is a usual work day. Zack on the other hand is sleepy (like all teenagers). He gets up, gets dressed and immediately picks up the small tube of numbing agent the nurses gave us,( he is supposed to put it on one hour before the iv, so that he doesn't feel the needle entering his skin)  he puts a large amount (too much) on his port entry and then realizes he used too much, it is oozing out of the bandage. He then comes in asking for my help. He wants to do a lot of this on his own, he remembers when, where and what about the treatment. It's amazing how he has taken a very active roll in his entire healing. I makes it easier on us as well, three minds working as one. We re do the cream, cover it up  and he drinks two more (already downed two) glasses of water. ( he is supposed to stay hydrated during the entire treatment to flush out the meds and dead cells). We are ready to head out the door. Frank got confused thinking he was only supposed to go Wednesday and didn't make arrangements with his workers. Zack tells him "we got it covered", " I don't want a big fuss Dad", I pout on the inside... I need him there, but I must be strong! If my son is strong, I must be too. So we are off for today's adventure.

Zack and I arrive at 8 am at the Cancer Center for his first day of Chemotherapy. It is an hour drive from our home, but the drive was smooth and though anxious, our spirits were ready to get the show on the road.
We are greeted by the staff, it is early for them as well, they are opening the doors, turning on the lights and preparing for a full day. All of the rooms are going to be full.  "Our" new routine is going to be weight, blood pressure, temperature. They will monitor this every visit to monitor weight and height to measure how much medicine to give each time. As he looses weight, he will require less medicine. They will also take his blood to test the platelettes, red and white blood cells in the event he needs a blood transfusion or platelettes. 

Zack's nurse Melanie, Absolute sweetheart!
We meet Melanie. A nurse that specializes ( for 10 years) in administering Chemotherapy treatment. We find out later that she also teaches other nurses, so we know we have the best! She was off for a week and thought he was there for his biopsy, asking Zack why he was drinking. We look at each other like "is she crazy?" We tell her NO MORE TESTS!!! We are here to start the treatment. She is embarrassed and realizes that she was listening to the nurses who were talking about the biopsy and hadn't read the chart yet. She immediately goes outside, reads the chart and comes in prepared to install the IV into the port.  She cleans the area and warns Zack of the strong smell of the cleaning solution on the "stick", he leans over his shoulder and smells it, "YUCK" this is horrible!! I smell it, and it reminds me of my cleaning solution for my jewelry so it doesn't bother me. Once the area is cleaned Melanie tries to insert a 3/4 inch needle and realizes that it is not long enough, the port is back further than it felt. She returns with a 1 inch needle and it is perfect. The numbing cream worked very well. Zack just felt pressure, not pain. And NO... I did not faint at the sign of blood. 

Ready for the "cocktail"
 Once the IV is in we are escorted to a hospital style room with large windows overlooking the parking deck across the street and parking lot where we parked my car. It's a rainy day, a bit gloomy, but somehow not so bad with the large windows on two separate walls. There is a hospital bed fit for a child (we are in the pediatric section), Zacks legs are touching the end of the bed, but he is still thrilled to see it as he is ready to go back to sleep. There is a  TV with basic Directv and recliner. The monitors are turned on and ready to start beeping when the IV bags are emptied. He starts off with two bags of fluids to continue with the hydration,  two hours later the bags are empty and  he is given an anti nausea medicine , also through the IV. Once that bag is empty Melanie enters in a blue suit, blue gloves, safety glasses and carries two sealed bags containing syringes with the "cocktail". Zack and I look at each other with weird expressions and ask if we too should have on Hazmat (sp) suits. Melanie starts to laugh and explains that "HE" needs the treatment, but "SHE" does not and if it spills on her it could soak into her skin and cause third severe burns. OK, THAT took the laughter away!! This stuff is serious!! But then again, we really did know that. Being the way we are, we still must laugh and poke fun or we would cry. With the first syringe he tastes metal in his mouth, we were told this would happen. He explains how he can feel it enter into his system and how weird it all feels.

Once he is all set up, Doctor Scotthorn comes in to check up on everything. The more I get to know him the more I like him. Our first encounter a few weeks ago was not as good, he had to deliver the news that chemotherapy was needed,  he was also the one that gave us the good news of NO MORE CANCER!! and did the bone marrow biopsy, so he has won my heart! He said that Zack's case is close to home as he has a 17 year old boy as well. I asked if he has any other Ewing sarcoma cases, and he said yes, two. One is very similar to Zack's but the growth was in the shoulder, everything was removed (like our case by a general surgeon that didn't know it was cancer). He has just completed his year and is doing very well. The other was a little more serious, and younger, but is also doing very well.  I don't know why we didn't ask him that before.

Once he leaves, in comes Karen, one of the case workers. She too is a sweetheart and very eager to help us with anything and everything. The information is coming so fast I hardly know how to absorb it. Zack is already in and out of sleep, so he is resting. Karen starts telling me about websites where I can blog, I stop her and say "maybe it's easier if I tell you where we are at. I pull up my laptop ( I must admit, quite proudly) and show her my blog, pictures and then pull out all the documents that I filled out for financial aide and Zack's school papers that must be completed by her and signed by the Doctor. YUP!! I impressed her (hey I need to have "some" control you know!!). We discuss Zack's school and how to get him all the cooperation from school to have his needs met. We discuss "make a wish" foundation, she is eager for him to fill out the papers to get that set up. He tells her he went online and did that, but she say he may have to do it again but locally as they "loose" papers at National. I try again to convince him that meeting Vin Diesel is his REAL wish.. we all laugh as he explains that this is MY wish!! We go over papers for a local fund that helps families with gas and food while in the center and hospital. A year of going 45 miles one way, three times a week... . I decide that there are options available to help people, this is what these fund raisers are about and having contributed for many years to many organizations, we are ready, willing and able to accept anything that comes our way.  My pride is gone when it comes to my son and what is best for him. As we are talking and looking over papers I look up and there is Frank! My heart is full of joy!  It rained at home and he couldn't work. He decided to come to see how Zack was doing. Just the short amount of time he was there gave me the strength to carry on for the rest of the day. I am known for "not needing anyone" and once you teach someone that, it's hard to go back and say.. okay "maybe" I really DO need you!!

It is now 1:30 pm and Zack and I haven't had lunch. He starts to feel bad and the nurse returns with a syringe of Benedryl. He immediately feels it enter his body and starts to feel spacey. I break from the meeting with Karen and excuse myself to leave and get lunch. She runs to her office and brings back two $10.00 gift certificates for Atlanta Bread Company, which is just down the road. Zack goes online and  trying to get the computer to stop moving (remember he's spacey) figures out what he wants to eat ( a good sign that he is ready to do so). As I leave, Zack is already falling into a deep sleep. On my way to the restaurant I return calls from messages that were left earlier in the day. While waiting for lunch to be prepared, I see a sign to text ATL to a certain number, I do so ( in need of some fun) and receive a text for a free muffin, I show the cashier and she wraps up a double chocolate muffin at no extra charge. (yes, Zack was feeling well enough to devour that as well).

I return 45 minutes later and he wakes enough to eat lunch, the muffin and then falls back asleep. I sit back, make my little corner of the world "home" and eat my lunch while continuing my "Greys Anatomy" series.. Off and on during the day, we hear young children crying. There are three or four receiving treatment and none of them are over 7 years old. How do their parents explain this all to them? I am suddenly relieved that Zack understands all that he does. I can't imagine going through this if he were younger. It is hard to hear their little cries, I am sad for them and their families. 

The doctor comes in to check on Zack around 3:30 and see's what I'm watching on my laptop. We laugh as he says "TV!!!.. I only made it through 30 minutes of that show". What they show in one hour only happens every five years in the real world.  I tell him my friends can't believe I'm watching this while in the hospital, but hey.. it's drama..  The Doctor tells us we are wrapping up for the day, one more bag of fluids and we can head home.

Karen returns with more papers, some filled out forms and instructions for us on what we need to bring the next morning. We are scheduled to return (Frank will bring Zack tomorrow) at 10:30 am for a short "burst" of chemo and a fluid wash. It should be a half day. Zack is given two syringes to take home with instruction on how to take the solution. He is to get a Mountain Dew (the liquid doesn't taste as bad in that) and put the solution into the drink. He is to drink it and if it stays down for an hour and a half he is good to go, if not, he must do it all over again. This solution really cleans out the bladder, which is very important as the bladder can hold the chemicals and dead cells which need to be released from his system. We are also told that he must return on Thursday for a shot which Zack decides he can do with one of his friends.

Time to go home, tired and ready
The drive home is quiet. Zack is asleep, which is a blessing as he was not feeling well when we left. I am exhausted, not from the day in general, but from all the information presented to me. I feel so well taken care of though. There is so much help out there, I wouldn't even begin to know where to start, we are being guided every step of the way.

We call Frank and decide we are all tired and order from a local restaurant. I pick it up as it's on the way home. We eat dinner and it is time for Zack to drink the concoction he brought home. Here is the final test of the day. The drink is horrible, it smells, it tastes nasty. He knows he has to drink it and keep it down for 1 1/2 hours. We are watching the clock. He has made it 1/2 an hour, now 1 hour, then I announce with great pride.. "you made it!!! It is 10 pm and you are done for the day!! he sits beside me and watches as I type the blog.  He  knows that he can relax and falls asleep, the only problem? He is asleep on OUR BED!!!

To be continued........

Monday, July 30, 2012

And we think WE have it rough?

Tomorrow is Zack's first Chemotherapy treatment. As I was anxiously thinking about it at work today, I realized how lucky we are. By now, most of our patients know what is going on. They come in one by one and ask "how is your son?", "we are praying for him and thinking good thoughts", yet it is the ones that stop and share their friends or their own stories where I find comfort.

One lady told me of her friend whom has two children, ages 4 and 6. Both were diagnosed with some form of cancer and both are doing remarkably well after their chemo treatments. Here is a family with TWO children still battling this horrible decease and they are doing well. On the phone a woman tells me that the year will go so fast. She said her husband has just finished his second round of chemo and radiation therapy, AND had brain surgery to remove the tumor. "He is doing great", she tells me. I realize just how lucky we are, the cancer is gone, the treatment is to keep it gone forever, the percentage of success is 85%+ that it will not return.

In the town next to us a boy lies with a brain injury. He was in a four wheeler accident several weeks back and is just now able to ask for a glass of water. My son can get his own, he can drive, swim, play video games and still smart off to us every now and then.

I am not discounting what we are going through or what we are about to go through (really what ZACK is going to go through). What I have learned to do in life, is realize that we may have it tough, but someone out there always has it better and someone has it worse than "us". "We" may just be the ones that have it better when compared by someone else.

This post is short, but filled with confidence that "our" first day will be a breeze. Until tomorrow. Be Well!

Sunday, July 29, 2012

Time moving too fast....

I know I have said in previous posts that I want this year to be over, but just not this weekend. As Tuesday comes closer, we are all just a little bit more on edge. Our moods are up and down, we are angry, sad, and frustrated. Frank keeps to himself, reading his Louis Lamour books that he's already read over and over for the past 20 years. (He takes after his Mom, who loved to re-read all her favorite books, she would be proud). Zack runs around with his friends saying "I only have a few days left to have fun", I try to explain that he is still going to have fun, just maybe more so in a different way. Me?, I can't get the house clean enough, enjoying "my" OCD right now, as I make sure that every area of the house is spotless, the plants watered, the laundry and dishes washed.

Our house with all Zack's friends vehicles. A lovely site to see! 
On Saturday, Rhonda, Peter and Mom came to Brevard so we could have some time together. I would rather stay at home in bed or cleaning, but thankfully, I KNOW I must get out and want to see my family, even if it's for a couple of hours. Frank is out working again, trying to catch up with his maintenance work and tells me to get out of the house and enjoy myself a bit.  Zack and his friend Trent are at the landfill disposing of some stuff from around the house and agree to meet for ice cream later in the day. We go to a couple of shops downtown, make it through the purse store without buying a new purse (my weakness) . We check out Moms booths in the Eclectic Cottage and find one in disarray, I realized that I haven't been in there to "fluff" it up since before Zack's surgery (June 6th). Mom and I straighten up the jewelry and check out the rest of her spaces. It's good to be out and do "normal" things.  We head to  Rocky's on Broad Street ( a quaint old fashioned soda shop in existence since 1942 , where Elvis Pressley is constantly playing in the background), Zack and Trent join us and flirt with the waitress' (friends from High School). Rhonda sits across the table from me, looking sad she asks if "we" are alright. (that's our phrase if we are not in sync) I realize that I haven't been "myself" (no kidding) and explain that I'm in a daze. I'm here, but not here. I know it is hard for those who know me to see me quiet, that's when they KNOW I'm not 100%, but soon I will be back to my Chatty Cathy self (God help you all LOL) .After a couple of hours, we decide it's time to head back to our respective homes.

I have stalled and put it off long enough. Sunday is the day I decide to get all of the business and personal bookkeeping done. It takes me all day in the home office, but I am so relieved to be ahead of the game. Ruth, our CPA would be so pleased to know that I am current with everything! Frank took time to go fishing and came back a bit more relaxed. Trent spent the spent the night and then hung out playing video games most of the day. It is amazing to talk with these young men. Trent explained that he just had his four wisdom teeth taken out and was nervous, he can only imagine what Zack must be feeling. Zack has shared that most of his friends have had, or currently have a family member with some form of cancer. They have somewhat of an understanding, but it is different when it is someone your age.  I make sure an talk with them one on one when Zack is not around, to see if they have any questions. I don't want them to be in fear any more than they already are and they are open to talk with.  Another friend invited Zack, Trent and several others up to his house for a pizza / pool party. ( the second one this weekend).  I know we will all be glad when we are done with the first treatment, perhaps he won't have the reactions like others have, perhaps he will stay strong  because he is already so healthy. One thing I know for sure, he has a ton of prayers out there for him and a lot of Love AND NO CANCER.... We are so far ahead already!! As I head to bed for a good nights sleep , I know that as I do, the next day will come, and then .... Tuesday will be here, but until then... we still have one more day! 

Friday, July 27, 2012

More blessings...

My day starts early, even though it's my day off, I have so much to do this weekend and want a little "down time". I am excited because we have an updated software at the office for filing our claims and scheduling patients. What can I say, I'm a computer geek. It was supposed to take them four hours to install and after 8 hours yesterday, we agreed to complete the installation today. Having missed several hours here and there put me behind in other areas of work, so it was the perfect opportunity to catch up.

I am walking through the house in a daze, it is 7:30 am. I am finding that I am sleeping better, perhaps it is the emptying of my mind at the end of the day or pure emotional exhaustion.  Frank is in the home office getting ready for the day. I look on the counter and see an envelope from my "other mother" Auntie Lee.  I believe I have mentioned her before. Lee has been our family friend for 55 years. She and my mother have stood by each other through thick and thin, ups and downs. She has been the truest friend in every sense of the word to our entire family. Her "kids" are our ages (which is why I call them kids. Ha Ha)  and whenever we get a chance to get together, we pick up right where we left off. Mom and I were visiting Lee when  Dad passed away. I couldn't think of a better place to be at that time. We can always be ourselves, no pretense, good mood, bad mood, sad or happy.  There is a life long bond that has always touched my heart. In the envelope was a generous gift, I start to cry, with all the running around, gas, eating out, medicine, this is another blessing. Frank and I are very lucky to have amazing careers, and as with any other person, when something like this happens, we are never really prepared. We have our pride, but several friends have said "if something is offered,  you can't stop that blessing or the people that want to help out". So we count yet another blessing.

One of my purposes of this blog is to help others in the event they find themselves in a similar situation, this is why I must be 100% straight with our new reality.  Having said that, I finally decide to deal with a discussion that I wasn't really sure how to handle. As parents it is up to us to do our best to protect our children to the best of our ability. Protecting them also entails teaching them to learn how to live  independently,  the "birds and bees", having the best possible grades,  choose a career, how to take care of themselves. We don't expect we must think about their future as a parent. Do they want children or not? One of the possible side effects of Chemotherapy is sterility. This is not written in stone, but it is up to us to ensure that if he chooses to have children the possibility is there for him. It is hard to approach a 16 year old, they don't want to (thank God) think about being a parent. This is when you must be "clinical" instead of emotional.  Let's just say, I have learned a little more about "banks" than I ever wanted to learn. An education I never thought I would get. Enough said. But, should he decide to have children, the option is going to be there for him. Of course, being me I did tell him that NOW, we can have a say in whom he marries. He was NOT amused. Ha Ha!

Did I say I "may" be emotionally exhausted. I wonder why? We had a wonderful family dinner with our "other" son Drake. Zack continues to have fun hanging out with his friends, he is now focusing on trading or selling his truck. It is too much work and money to fix it up for driving and now with the treatments we don't want him to get too overwhelmed or tired. He will start home schooling soon and we want his energy to go towards that. Tuesday is coming too soon, but that also means that we can mark off one treatment off the list.

Thursday, July 26, 2012

Life goes on....

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...

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.

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!! 

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!

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.

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!!!

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,.

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 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.

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 camera 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.

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.