Tuesday, October 30, 2012

Follow the green laser........

 This morning was my turn to take Zack for both treatments. As we are driving the closer we get to Asheville snow starts to fall, but so light it looks like rain. We first go into the Cancer Center for them to access his port and start him on IV fluids along with his anti nausea medicine. Angie is his nurse today, she is always so happy and yet today she is more subdued. Her father who has been battling cancer for a while now is not doing that great. I still don't understand how she can work around this disease all day, every day and go home to help take care of her father. What an angel! She allowed me to take a picture of her while preparing the "red crap", as Zack likes to call it. His chemo treatment.We love all of the staff, each and everyone of them are special in their own way and we are so blessed to have them caring for us all!
 Once he has the fluids in his system it is time to go down to the lower level for Radiation. This will be my first time seeing what they do and as always, he has allowed me to take pictures (the grump photo to the right was to intimidate!) We are escorted by Angie through the staff elevator downstairs and told to come back up when done. The technicians (four in all) come out to get us and we are taken into "the room". Zack lays on his stomach on the table. I look at the ceiling and there is a beautifully painted image of the sky with tiny little lights designed to look like stars. Zack teases that because he doesn't lay on his back he doesn't get to enjoy the view. 

The drawings on his legs all makes sense now. The green laser light lines up to the exact pattern marked on his leg and thigh. The techs move the machine around, up and down until it is perfectly matched to the markings. Zack shows me the mold they made which is designed specifically for him. One leg fits in at an angle with the knee pointing out, the other with the leg a little twisted. The technicians explain how it all works and where the actual laser is that shoots the radiation rays at his leg. 

When they were ready to do the treatment, Matt, one of the techs walked out to the waiting area, just outside the room. He was asking how we discovered the tumor, how we are handling everything. He is a young man about 30 years old, married and teasing about his wife wearing the pants in the family. I explained about our initial treatment from the surgeon that removed the tumor, having no insurance and now Inclusive Care and my blog. A few minutes into our conversation a man walks in and sits down. He is in his 40's and volunteers that this Friday will be his last radiation treatment. He has had 30 and his story was, as he stated a mixed blessing. He was involved in a serious accident where he was knocked unconscious and in a coma for about three weeks. When he woke up he didn't remember anything that had happened in the accident, but discovered the doctors discovered a malignant brain tumor. They removed the tumor without incident  and he has been going through chemo and radiation. His prognosis is very good ("depending on which doctor  you listen to"). He explained that the biggest changes are that he talks a lot more now, and his moods fluctuate, "like a roller coaster." I told him that is the exact word I use to describe our situation. One day is up and the other down. He said that there are days when he has a lot of energy and some where he has none left after his radiation treatment. I wished him the best and as he was going in, Zack was coming out.

We went back upstairs for the chemotherapy. Zack was talkative, in a good mood and as the treatment continued his mood went from good to bad. He was abrupt with Angie and the Doctor. He was told that he needed more fluids, he was border line dehydrated and they didn't want him to end up in the hospital. The extra fluids would take another hour and a half. Zack is NOT happy. He continues to be abrupt with me, Karen and Angie. Karen tries to talk with him and explain what is going on and he doesn't even make eye contact. As a parent this is hard to watch. I want to ask him, "where are your manners", but as his caregiver, I understand too well that he is not feeling well at all and just wants to be left alone. I head outside in the hall to apologize to both Angie and Karen, who both tell me that they do not take it personally! They understand what he is feeling and it is totally expected. "Of course he doesn't want to be here, we don't blame it at all!" 

I take a nap while he receives the rest of the fluids. When I wake, he decides that he is hungry and finally lets me go down to the cafe and get him some yogurt and a drink. He is still pretty nauseous but doesn't want any benadryl as it knocks him out. Within thirty minutes we are given our walking papers. He must return tomorrow for the Neulasta shot and radiation each day. Chris and He will go tomorrow so that Frank and I can continue with our work week. How lucky we are that his friends like to go with him. 

We stop at Walmart on the way home and get him some warmer clothing. With the weather turning colder and him on blood thinners he gets and stays cold. We discuss the balance of the week, how it will get easier and he will feel better. He must keep up his spirits, even though it is hard. How he must also be disciplined once finished with his treatment and come home immediately to continue his school work.  Karen told me how she was asking Zack yesterday, if he brought his school work with him, she went on to tell me that she told Zack " I'm sure that I don't need to tell you to do it with your Dad here," Zack looked at her and said "No, that' my Moms job", "Dad tells me to do my chores." She and I were laughing, at least he knows who is in charge of what!

We arrived home around 5:30 pm, ate dinner (he was finally able to eat a meal) and he is now in his room resting, but in much better spirits. Our friends up North seem to be okay in the wake of Hurricane Sandy. Aunt Lee had a tree fall down and nearly hit her back porch. Nancy's Mom is without power, but has her gas stove ready to cook on and the water has stayed out of her house. God Bless everyone that is having to deal with this storm. 

Monday, October 29, 2012

Road map to radiation...

Zack and Frank headed out early for a day of treatments as I headed in for a day at work. We were all anxious as we had no idea what to expect. When they arrived the usual vitals were taken. They tried to get blood from his port, but ended up going into his arm. This has become a problem of late. Though he is on blood thinners, the blood clots easily before it even gets to the tube. They started him on IV fluids in preparation for chemotherapy. Once he was set up, they send him downstairs to begin the radiation treatment. Luckily both treatments are in the Cancer Center, which makes it more convenient. 

Radiology began by re-marking his leg. Zack refers to his leg as a road map. We tease about PA (Pennsylvania)  being near the knee. They had originally marked the area a couple of weeks ago and those markings were still there, however they needed to mark it even more for the beginning of the treatments. He will have a series of five treatments for five weeks, a total of 25 - 28.  They said worse case that he could have some blistering and soreness, if this occurs they have a special cream and bandage to  put on the area. They said that he may have some mild burning (like a sunburn) and to put aloe vera on the area. They don't really anticipate too much of a reaction because it is in a muscular area and not so tender. Zack didn't seem too affected by it today. 

The radiation wasn't painful at all. Zack said that since he had his IV Fluids going the technicians were supposed to call the upstairs nurse when the machine beeped (meaning it was running low). They didn't  know how to silence the machine and forgot to call Emily, his chemo nurse. Zack finally told them how to hit the silence button and advised that they call his nurse as the fluids were done. Once that radiation was complete they went back upstairs to begin chemotherapy. This will be his new routine for the next five weeks. Either in the Center or while in the Hospital. They even said that he will be able to walk over from the Hospital (in fact the radiologist encourages him to walk at least thirty minutes a day to keep the muscles in good shape in his thigh) . They said that he will be able to be unhooked from the IV fluids, walk over, have his treatment and then be back at the hospital within thirty minutes. When he went by way of the ambulance, we're not only dealing with the cost, he was traveling for an hour to go across the street. 

Though it was a long day for them, Zack was able to get about three hours of school work completed during the treatment. They left about 4:45 pm and were back home within an hour. On my way home I call Aunt Lee (second Mom) to see how she is. I found out from Mom that she had another fall and this time broke her wrist, also on the left side. No she's not klutzy  the first time was on the bleachers at a football game, this time not sure, but probably lost her balance with her left leg in a straight brace. I'm worried and hope that someone can get her home care, even if it's just a couple of times a week to cook meals and help clean. Lee sounds great having been through two breaks in as little as three weeks, her attitude is amazing. I come from a long line of tough women. She may not be my "biological" Aunt / Mom, but the women in my life have always been strong and they are my teachers. 

When I arrived at the house, Zack was outside on his ATV with Drake sitting on the ground next to it working on the lights. Frank was inside preparing the balance of dinner  (I had put on beef stew the day before so they just had to fix the sides). I wasn't hungry so I sat on the couch and relaxed with a bowl of cereal. They were sitting at the table and talking, talking and talking... It was so funny. I'm trying to watch my show and they are so loud I can't even hear a thing. I tell them to tone it down and they both say "You're the one that wants us to communicate." They both laugh, as do I. It's so good to see both of them in a good mood. The day went well and we are all relieved.  We now understand the new routine and are ready to deal with the schedule! Some days Zack will be able to drive himself, (when he only has the radiation.)

The anxiety has yet again dissipated, a common practice for us all. We all tend to become accustomed to the changes quicker. Tomorrow, Zack and I go back to the clinic for his second day of both Chemo and Radiation. This will be the first time for me to see this new addition to his cure and meet the people that are now a part of our new journey. 

Sunday, October 28, 2012

"Mom, I just want to be a normal kid"

We find ourselves yet again on the rollercoaster. Zack's mood swings have been very strong of late. IF there is anything good that comes out of this weekend, it's that he is communicating more than ever. We find ourselves trying to find new ways for him to open up about his feelings. He doesn't make it that easy. Usually we just need to hang out where he is and he will eventually start talking. Late last night after his friends left, he  was sitting at the fire pit. Seeing this, I went out to join him. Frank had already fallen asleep on the couch and I didn't want Zack to feel alone. I went out there and sat with him. As before he talked about a couple of trucks that he had found. He finally opened up more about how he feels, emotionally and physically. He said it didn't have anything to do with being grounded. He felt so good that he had his friends come and hang out with him and yet, when they talk about school or work, he misses that. He said "no one talks about the cancer or the treatment anymore," which he likes, but at the same time, he wonders if they really can understand what he is going through. He all of a sudden decides it's time for bed, he is tired and doesn't want to talk anymore. He isn't in a bad mood about it, he just doesn't think he knows how to express how he feels.

We wake up this morning around 9:30 am. Unfortunately that is the exact time he has to give himself his shot. THAT is how I must wake him today. I walk into his room, Sidi (the dog) follows me and jumps on his bed (well tries to, it is so high he needs a little help). Zack sees me, sees the time and hides under his pillow. I holler "it's party time!!!" "Just what every mother wants to do, wake you up with a smile and a shot!" He is not amused so I leave the shot, cotton swab and alcohol on his bedside table and tell Sidi "make sure brother has his shot!" I then hear Zack talking to the dog, I'm not sure what he was saying and I probably don't want to know anyway. 

Once we are both up and around, he starts to work on his schoolwork while I sort the laundry and straighten up the house a bit. I settle in on the couch and he comes in and sits down. I remind him that we were going to watch Hamlet together (with Patrick Stewart) for his homework. It is a three hour modern version on Great Masterpieces (PBS). He is not thrilled, but I let him know that I too am watching it so he doesn't feel quite so alone. We didn't find out until later from his friend Chris, that his classmates have been reading the book in class and discussing it with the teacher. She simply told him to watch the movie and write annotations. We get settled in and watched (well I slept for thirty minutes towards the end... I did my best!). the movie on my laptop. With just an hour until the movie was finished, we heard a car door close outside. 

It was the two Chris'. Both very dear friends. Chris F. had texted me earlier asking if Zack could go with him to Connestee Falls to pick up some leftover stuff from his fundraiser yesterday. Unfortunately I had to tell him no, as Zack was still grounded, BUT he could come over after he is done if he likes. He said that sounded great, he was going to see if he could help Zack with his schoolwork, as they have two classes "together". The "other" Chris had been working on the ATV  at his house with Zack and decided to finish it up and surprise him, so he brought it down to our house. 

Once Zack and Chris F. came back in Zack showed the school work he was confused about. It seems that some of the work is the same, but because Zack is home, his curriculum has been altered some. Chris looked tired, he had worked so hard on his Senior project and it was completed yesterday. I couldn't believe he wasn't home resting. After his visit, I call Zack in to finish watching the movie. His mood is a little different. He comes back in the house and slams the back door, he then goes in his room and sits abruptly in his computer chair. I ask him what is wrong, he yells NOTHING!! I snap! I am trying to do the best I can, we all are, but the mood swings at times are so frustrating. He is right, there is nothing we can do! I tell him to get his behind on the couch, he comes and sits next to me. He is sweating profusely and I ask him what he did? I'm not used to seeing this. He gets angry and hits his fist on the arm of the couch. 

He tells me that he walks up the hill and this happens. He is tired all the time and is fed up with everything. He wants to go to school, he tells me "Mom, I know you're not going to believe me, but I really miss going to school." I let him know that of course I understand. I "try" and explain how I remember (right or not) when we lived in Spain and I was homeschooled. I was frustrated because I didn't want my Dad to teach me. He didn't realize that I was homeschooled, or at least didn't remember. He shares that he feels like everyone around him is doing what all normal teenagers do, getting jobs, going to school, going to games, participating in sports and he has to go through all this crap! I told him that no one is to be expected to understand, We don't even understand exactly what he is going through. We see him when he has a treatment and yet we don't understand what it feels like.He continues to tell me that with school, he doesn't understand what he is supposed to do, he has to wait to get an email back from a teacher and he has such a hard time sitting and getting motivated.  I explain that it is so hard to see him upset and yet he has every right to be angry. Crying he leans his head on my shoulder and says "I just get this way every now and then, you know I'm going to be okay." I let him know that because he is grounded, that too could have a negative effect on him this weekend. he says that he really doesn't even want to do anything, go anywhere and sometimes doesn't want to see anyone. He is depressed and I can't blame him. Tomorrow is a new routine, at least for the next five weeks. He has his first radiation treatment along with the chemotherapy, it will be full day for he and Frank. We are all nervous as it is yet another "first". I'm sure once he is done with the day his anxiety level will lower, hell all of our anxiety levels will be better. At least that seems to be our new "normal". 

We finish the day with a nice family dinner and he starts to talk about his school work and what he is going to do tomorrow. He also, of course, mentions a few more trucks he has found online. His grounding will end on Wednesday and frankly I can't wait. We have been questioned a couple of times about grounding him during this time, but as previously stated, he is a young healthy man and when all the treatments are done, he will still need to know right from wrong and that part of parenting must always be a constant (not that we haven't bent the rules of grounding, just a little bit).

As I end my day, I'm reminded that not only is it my best friend, Nancy's birthday today, but my brothers, Walter and William (full term, stillborn twins) whom I never had a chance to meet (or them me) were also born on this day 56 years ago. Going through what we are now, I can't even imagine what it must be like to lose a child, let alone three (she lost another just before me). My mother is constantly reminding me of how strong I am and I can't help but know where I get it from. HER!!! I am blessed to have an older sister, Rhonda and a younger brother Bobby and know that things are as the should be, but on this special day I feel blessed to be here and be strong for my son. Thanks Mom for teaching me to be strong, like you!!!

Saturday, October 27, 2012

It's a nice day for a street fair!

After such a rough day yesterday, we are yet again in a different "light" today. Zack is still tired and somewhat weak, but not as much as yesterday. He wakes up with a little bit more of a smile. He has seen all the people that posted on facebook and somehow feels more a part of the community. His color is even better today. He rested quite a bit yesterday which is exactly what he needed.

He gets up, eats some breakfast and hangs out in his room checking websites and watching some of his shows. I decided to take it easy today. I can feel emotionally that I have no more to give and the only way to rejuvenate is to rest. Frank came in and asked Zack to go fishing down at the pond behind our house. We can tell Zack is really not up to it, but know that getting out and walking just a little bit will do him some good. He decides to go ahead for a little while and after about an hour or so returns home. Frank later tells me that he followed him home to make sure he was okay, as he said he was pretty weak. He said he took his time walking back and though he saw that he was not able to walk as fast as he usually has in the past, he wasn't out of breath or struggling. 

Zack and I started to watch Hamlet, with Patrick Stewart. A three hour modernized version which he is required to watch and write a paper on. After about thirty minutes he said he would rather read the book, but since that's not what the assignment is, we will resume watching it tomorrow.

Around 2 pm he comes out of his room and announces that today was the Halloween Festival on Main Street. We never even thought about it this year, we have, in the past set up a water feature or at least gone to see the vendors which are less and less each year. Even though Zack is grounded for a couple of days (yes, as tough as it is, we still have to be parents), we decided to take him later in the afternoon when the crowds would be less. We set out around 4 pm and immediately upon arrival see a couple of his good friends from school. Frank and I leave him to hang out with his friends and walk up ahead to check out the vendors. It is just the right crowd. Not so many people that you are close to anyone, so we don't worry about him getting sick, it is also all outside. As we walk up one side and head down the other I see Zack wandering towards us. He has a symbol painted on the left side of his face. He tells us that Parrish, his art teacher for three years painted it for him. That was his main purpose to go, so that he could see his art friends. He has been in the Art classes and Art guild for three years and was going to continue in the guild this year. The summer before last he went to SCAD (Savannah College of Art and Design) to see if he wanted to become a professional artist and came out understanding that he loved art, but wanted to become a professional mechanic and keep art as his past time.

As we head back to the car, we stop and see Parrish at the Art Guild booth where they are raising funds by painting faces. He pulls me to the side and says that the guild really wants to do something. Could they do come and visit? How does that work? I tell him that Zack would love to have them visit. He is allowed to be around small groups of people when his counts are good and as long as no one is sick. When they enter the house they must wash their hands and avoid physical contact, just to play it safe. He takes my blog as well as email address and tells me he will be in touch soon. While standing there, Linda (mother in law) comes up to us with her niece who is waiting to get her face painted. Frank had won  a plant from the Master Gardeners when he was able to name it (personally they didn't know who they were dealing with!) and he decided to give it to Linda, who accepted it gladly.

We arrive home, order a pizza and are ready to settle in for the night, when Frank and Zack decide to set up the new fire pit I purchased last week. Zack receives texts from a few of his friends and asks if it's okay for them to come by. Frank says that he is allowed two friends only (part of being grounded). They get a nice fire started and the three of us sit out there and talk about cars, the fire and pretty much anything else that comes to mind. The sky is lit up beautifully with the reddest sunset and I'm actually enjoying just sitting with my two guys. After about an hour his friends arrive, there are four and instead of them going out to eat, they bring it back here so they can hang out with Zack. Frank and I come back in the house to give them some teen time, when I ask Frank  if we can bend the rules and let all four kids stay, this is the first time this weekend that I see Zack happy and having a good time. Frank, of course, agrees. 

At some point during the evening Zack comes in and shows me a text message on his phone. The truck he loved so much has sold. We tell him that there is something better out there and when the time is right he will have more fun shopping as he will then have the money from his other vehicles selling and will be able to be pay cash and own it outright. He does seem to get over it quickly, it helps that his friends are here to distract him. Drake stops by when he sees all the trucks. I think his feelings were hurt as he thinks that he wasn't invited and I tell him that no one was, they asked if they could stop by after getting their meals. I told him Zack was still grounded, but since he has been having a hard time this weekend we decided to let all of the kids stay. He tells me that Zack is not supposed to know, but the school has cancer t -shirts and everyone is selling them as a fundraiser for Zack.  He and one of the other kids told me that they were selling them at last nights game and they are selling like crazy. At times when you feel alone, you are reminded that you are not! Zack at times feels this way, but hopefully, he will realize that he is NOT alone, he never has been!

Friday, October 26, 2012

Senior Appreciation Week!

We have all been so busy taking care of business, the business of saving Zack's life. Life, at least the "normal" parts fall through the cracks. As I go on Facebook I can't help but feel very sad. Today was Senior Appreciation Day! My kid is a Senior and as his friends are all celebrated for their accomplishments in sports, band and academics (as well they should be!).  My son is at home, giving shots in the stomach so as not to have blood clots, having chemo cocktails, radiation, blood transfusions, platelet transfusions and not being able to celebrate being a Senior with his friends. Some may see my sadness as jealousy or bitterness. There isn't a jealous or bitter bone in our bodies! It is so exciting to see all these young men and women grow up and become the amazing people they are becoming. 

We are constantly reminded of how un-normal our lives really are. As adults we must learn to cope and deal with what life throws our way. But as children, life is supposed to be light, fairly easy, with school as their only concern. Today was especially hard for Zack. He is home focusing on his school work, he wants to go to the football game, but knows that his blood level is not good  (he is weak, pale and tired). He makes excuses for why he "doesn't want to" go, as he does so, he tears up. How can I sit there and watch him in pain? I decide to put a post on FaceBook with my own Senior Appreciation "kudos", so that Zack's friends could maybe post something to cheer him up. Let's just say, I think it backfired, feelings were hurt without intending to.I try and do something for my son and it becomes an insult to someone else. I tend to do that quite easily. Without even knowing what the hell I do, I open my mouth and stick my size 11 (42) foot in my mouth! . How can I explain how this pain  feels? I can't! 

All I can do is go to bed, try and forget the day and hope that tomorrow is  better. Hope that Zack will be in a better frame of mind, have more energy and have something to look forward to. Tomorrow is another day and if I have offended anyone today with my bragging, pride or sadness, How can I explain?, I can't! 

Wednesday, October 24, 2012

No REALLY... How are you?

Our day starts early, just like any other work day. Zack must go for a double blood transfusion this morning, so he takes me to the office and then heads out to pick up his friend Chris. They arrive at 8am and by 9:30 Zack is told that he will only need blood, not the platelets as originally thought on Monday. His count came up quite a bit, the Doctors are pleased. They order the blood, tell Zack and Chris to go and grab breakfast and return for the transfusion. 

I am at work, but anxious. We never know what is going to happen one visit to the next. Having never been someone that handled change well, I am surely being put to the test. Frank remains calm (or maybe it's just on the exterior for our benefit). Once I receive the call from Zack I am almost in tears. I am so relieved! I call Frank and let him know the update, he too sounds relieved. From that moment on my head is clear, I am able to focus and my bounce returns in my step. 

Zack's spirits are good, he knows that his day will be short and he doesn't have to return until Monday. They told him to get plenty of rest this weekend, Monday is the full treatment.  He is to arrive at 8am, they will start him on IV fluids and he will head down to Radiation. Once they are done he will go back upstairs and begin the Chemotherapy. A new routine for us all.  We are not sure what to expect, but somehow at times not knowing can be a good thing. It is good to be prepared, but how can anyone really prepare for what "we" are going through? One step at a time is the ticket!

I have people ask me on a daily basis how we are doing. I know that the majority are sincere in their quest for answers, what surprises me is when some are confused and ask why I answer with a positive response.  How can you say it's a good week when your son has to have four blood transfusions? My response? "because he doesn't have to have six!" It's all about the attitude! (okay I'm a smartass too!) It's about knowing that if we let any part of this "get to us" IT wins!  Zack's attitude is amazing! He has his bad days, we all do, but for the most part we get up and figure out what is on the days agenda and get on with it. The "pity" look is what catches me off guard. We don't feel sorry for ourselves, the only time Zack has ever said anything was when his car caught on fire, he looked at me and said "Mom, I have NEVER asked this, but today I kind of feel like, Why me?" My response is and has always been, shit happens (yes I use those words with my kid, why not, he hears it out there in the real world all day long), it's how we react to what happens that can turn a bad situation into a good situation. Even with this diagnosis, he has touched so many lives, helped so many people just with his attitude. Since this diagnosis we appreciate our time together more, we appreciate kind words from friends , little notes from family members, we even appreciate a good argument every now and then to remind us we are not fragile, we are strong and can take whatever is thrown our way. (NOT that we are asking for anything else!)

So the next time you ask someone how they are, first make sure you really want to know the answer and second if they respond in a positive manner, just go with it! One thing we have learned from our journey so far is, we have stopped trying to put on a strong front, if we are good, we tell you, if not, it's okay to say we need encouragement. Thanks for caring enough to ask, loving us enough to accept whatever the answer is and not judging us for our missteps (or swearing!) 

Tuesday, October 23, 2012

An apple for the teacher

After sending emails out to all the teachers and the Vice Principal asking yet again for help for Zack, the emails started coming in. I must say, I'm not impressed with "home bound". The lack of care that has been shown with regards to Zack's schooling is very sad.  I had promised Zack that I would lay low for a couple of weeks and not contact the teachers, nor nag him (as he puts it) on a daily basis about his school work. Well, it is four weeks later and though a couple of teachers have sent emails with new work for Zack, not a single visit home from the homebound teacher. When I finally get a return email, she explains that she has been very busy with homecoming and yes, Zack is pretty far behind in his work. Seriously???? NOW you tell me he is behind? Why haven't you emailed him with reminders asking for his work? Don't the kids in class get this? I'm sure the kids in class standing right in front of "you" are asked for their work, given deadlines and expected to do their work. I don't want it to be December and "all of a sudden" get an email or note saying he will not graduate because "he" didn't do his work! It takes a team and I as a tax paying parent expect others to do their part!

I was so ready to go straight to the Superintendent of our school system and ask for his help. Thankfully, after talking with a couple of people, I was calmed down and decided to give the teachers another chance. In my email I asked for them to give Zack deadlines and to include me in those deadlines. I also asked that they call or come by at least once a week, even if for thirty minutes. My thinking is why have schools, classes and all that expense, if a student can be handed a laptop and told to do it on his own? Well this is pretty much where Zack has been. Under "normal" circumstances I would have no problems "fighting" with Zack to get his work done, but through everything else we are going through, this is when the school system needs to show that they are capable of caring for every student, including "special needs", which is who Zack has become during this time. Zack even agreed with me last night and said he hasn't held up his end, but could also use a few of the teachers help. 

I left Zack doing his school work this morning. I have told him that he doesn't go ANYWHERE, no friends, nothing until he is totally current with the rest of his classmates. I remind him that if he doesn't do the work, he will not graduate and that is not an option. I also tell him that if he needs to see or talk with a teacher, he needs to email them and ask for help! They are not coming on their own, so he needs to be the one to ask, when we ask, they do appear. Like this afternoon. His homebound teacher came out and spent a little over an hour with him. When she left he was excited because she helped him find more sources for his Senior paper. 

The caped crusader herself!
I had gone to see Mom and took her to her eye appointment. She originally had an appointment in a couple of weeks, but once I found out there was no Center today and her eyes were really bothering her I was able to change the date. Everything checked out just fine. It turns out that she needs glasses, a surprise to her since she had cataract surgery several years ago. I guess we didn't realize that her vision could change again. With a relieved look on Moms face, two hours later, we are on our way to run a few errands, have a Belgian break (dessert and coffee around 5 pm) and hitting one of our favorite thrift stores. It was a short visit, but well worth it, Mom and I had a a great time together as always. (Mom will probably kill me for posting this picture, but I just had to, Ha Ha)

I was home by 7pm, grabbed a slice of pizza at the local corner store ( I know, really healthy dinner). As I was walking in the back door, Zack's teacher left through the front. Zack was all energetic and excited, which was worth every email. Frank and I decide to catch up on some of our pre recorded shows. 

Monday, October 22, 2012

Change is good!

Planning on having the entire day at the Cancer Center, I arranged to have Jessica work in the office for the full day. However, being the "control freak" that I am, I get up at 6am, head to the office to "open" up. This consists of turning on all the lights, making the days fresh popcorn, opening up the computer programs with appointments, sign in and insurance submittal program.We also have this huge air filled Frankenstein that stands outside during the season to welcome all who enter. There's something about walking up to this giant that brings a smile to your face.

Once finished I call Zack and tell him to meet me in the driveway, we need to head over to the center for our 
This is the truck Zack wants to buy
8 am appointment. The plan for today was to first get a blood transfusion, then go downstairs for his first radiation treatment, once that is completed we were to go back upstairs for an additional transfusion and lovenox blood work to check his blood for possible clots. Traffic is heavy on our 45 minute drive, with people swerving in and out of lanes, cutting us off and  running up on us as if to push us to go faster. Zack notices every "cool" truck and car the passes us. What tires they have, what gas mileage it would get, what looks good, what should never have been added. Our conversations to and from are often about vehicles and his like and dislikes. He even has me talking about trucks! He has found a really nice truck and if it's still available when we get the insurance check for the totalled car and sell his older truck (we have a buyer) we would like to get this. Of course Uncle Floyd has to give it his seal of approval.

We walk into the center (sometimes I refer to it as the clinic), all the usual vitals before heading into the room for his blood transfusion. Zack decides he doesn't want the port accessed today, he offers his right arm for an IV instead. The IV goes in fairly easily, but the minute the solution goes into his system it starts to hurt. He finally asks the nurse to see if there is something she can do, it's too uncomfortable. She removed that IV and put another one in his left hand (which by the end of the day is very touchy and swollen) . This one was more comfortable and he was able to finally get settled in and rest. We weren't there thirty minutes and the staff came in and told us that the Drs. had determined Zack's numbers weren't good enough to continue with chemo or radiation this week. His blood count and  platelets are just too low and they want him to have a break to allow his body to rest. Those who know me, are aware of how I like to know what is going on, when, how and where. When anything changes, it takes me a couple of minutes to absorb the information, process and then rearrange my entire schedule in my head. Zack is thrilled, though he has a hard time showing it since he has already been given Benadryl and is quite sleepy. Dr. B. comes in and asks how Zack has been this past weekend. I tell her that he has been tired, but has been having fun with his friends and when tired comes home to rest. For the most part though, he has just kept going. (wonder where he gets that from?) I tell her about the people he met on Friday and how they said he helped them. She said "he is an amazing young man, we have several teenagers and he is so different, he takes the time and has the knowledge to help others, this is rare. You should be very proud of him." Of course being a mother, I am beaming, but this is no surprise. He has his bad moments when I want to run and hide, but when someone really needs help, he is there. I manage to get a small nap in as does Zack . We are waiting for the transfusion to end and what started out as an all day visit, turned out with us being on the road (two units  later) by 12:30. 

With the change in schedule this week,  Zack and Frank are to return Wednesday morning early for blood work and possible blood and platelets, I make a couple of phone calls. First I call work to let them know I will be in for the afternoon shift. I then call Mom's eye doctor and see if they can fit us in tomorrow for an exam. Mom has been having problems with one eye and her appointment wasn't for another two weeks. Knowing that I have tomorrow free I decide to take advantage of the time off and get her eyes taken care of. I also call our hairdresser and see if she can fit either both or one of us in her schedule tomorrow. As it turns out she was on her way to her sons college town to see him, he was just admitted to the hospital for a possible appendicitis. Zack and I grab lunch in Brevard and by two he drops me off at the old library where early voting is taking place. Again, I had decided to take care of this, since we never know where we are going to be on voting day. I mentioned to Zack that the one thing I am learning from this treatment is to accept change a lot faster. He tells me with pride that I'm doing a really good job, Kind of cute! 

I arrive at the office and work the afternoon. It's nice to be back at work, I am able to take care of business and am back home by 6:30 pm. Frank and Zack are outside working on the driveway trying to make repairs to the large holes in the concrete with a new compound Frank has discovered,. I head inside to fix dinner. Yup I said it, I fixed dinner! There is something about having new countertops and new flooring. I am in love with my kitchen and was actually excited about cooking,. Not sure how long that will last, but for now I'm sure everyone will benefit. Once finished with the project, Zack heads out to see his friend for a couple of hours and when he returns at 9 pm, offers to take Sidi (our dog) to the vet in the morning. Frank had made an appointment for him to get checked. He has a red and swollen eye and is scratching his skin raw. (I had to put on the Elizabethan collar again).  Zack tells me to sleep in a bit before heading to Hendersonville at noon. For some reason he likes taking the dog to the vet (maybe there's a cute assistant!) . It's nice to see him with energy again (very common after transfusions). I emailed all of his teachers and vice principal with my discontent of him not being better guided with his school work (4 weeks since his last home visit!), so the emails started pouring in with offers to visit and homework assignments. He will be a very busy young man this week getting all of his work caught up. 

Sunday, October 21, 2012

The beat goes on....

It's the weekend and we are all busy running around as if it were the last days we have to check off our lists. Since we received a call last night about the scans being good, we are all in great spirits. I get to sleep in on Saturday, but do I? Nope!!! I have all these ideas in my head before going to sleep. I wake up , Frank has gone fishing with Jeff and Matt, so they will be gone until at least Noon. I love doing things when no one else is around, kind of a "surprise" effect! Zack comes in, he spent the night at Drake's and came home early to get some breakfast and hang out until Drake wakes up. I decide to surprise Frank and let's face it, all I have done for days is sit. I have put on way too much weight and need to start getting back into shape, so I go outside with Zack, who is starting to feel the effects of low blood count but is determined not to let it stop him. We pile up the cardboard, recycling, etc.. to haul off to the dump. Zack is heading by there anyway with Drake so he tells me he will be glad to take it with him. He gets the leaf blower (professional grade backpack) ready for me and heads back out to Drake's,  It takes me two hours, I go up and down the street, around the water feature, the driveway, front of the house and patio, side of the house and finally the back yard. Once finished, I come into the house, start a couple of loads of laundry and relax until time to go to Linda's for dinner.

Zack has decided to stay with his friends while we go to dinner with the family. He knows if he doesn't feel well, he can return home and rest. Frank comes home from fishing and can't believe everything we did. He had that on his "to do" list for the day, so now he decides to sit and relax as well. At 3:30 we head out towards Rosman about 20 minutes away. Linda has fixed up the house since Big John (Franks Dad) has been moved into a nursing home. He was a chain smoker and it took her forever to get the smoke "look" and smell out of the house. She is so proud and wanted to share with us. All the kids, with the exception of Jamie (younger sister in law) were able to make it. We were all sitting around and catching up on recent events, when Thanksgiving was mentioned and then Christmas. I pull out my phone to see "where" we are going to be. Everything in our lives revolves around the treatments. We determine that we will be done with week one of his treatment for Christmas and in the hospital New Years Day! It's hard to get excited about the Holidays, though I know we need to for Zack's sake. Within a couple of hours we all head out, I'm anxious to come home and make sure Zack is okay.

We arrive home around 6:30 pm and within an hour Zack returns. He runs to his room and crawls in bed. He is so white it's hard to look at him without saying anything. He looks disappointed and finally tells me that everyone is going to be at Austin's house for a fire and he is coughing so much he didn't want to go. He is frustrated that he is not feeling well. Usually when he doesn't want to share much, I just hang out in his room quiet until he starts talking.  He tells me that he doesn't like all the changes, he likes to know what is going to happen! He is pissed that he has to have another blood transfusion on Monday. He broke up with his girlfriend and after about an hour finally tells me she is a "B" and never came to see him at the hospital even though she lives in Asheville. He says he doesn't need that kind of friend. After awhile I leave him alone so he can get some much needed rest. I stop in his room again at 9:30 to remind him to have his shot. He is still taking the Lovenox (blood thinner) to prevent blood clots. This too is getting old for him, the shots are more painful as his stomach is full of bruises and no where that he hasn't already given the shot.

Preparation for new floor
 It is Sunday and I manage to sleep in until 7:30 am. Zack is still sleeping and Frank has gone down to the pond to fish for an hour or so until it warms up enough to do some things around the house. I had decided last night just after returning home to redo the kitchen floor, so after making a quick run to Lowes I returned with four boxes of  "peel and stick" floor tiles. I am learning that part of all this running around makes me more OCD, not sure what the connection is other than having to keep everything in order to make sure we make appointments, pay bills on time, do Franks bookkeeping within the right time, etc...  Our kitchen floor was white and more than seven years old. I was getting more and more frustrated with every little speck of dirt and determined to get rid of that problem. Having never installed flooring before (not without Franks help) I was all pumped up to do it myself. After spending only $100 and taking five hours, we have a new kitchen floor. It came out great, even Frank was impressed, Zack came in and even took his shoes off! Once the floor was finished and realizing I wouldn't be at work tomorrow (with double transfusion and the first radiation treatment) I borrowed Franks truck and headed to the office to get some "winterizing" done. Most of the leaves have fallen so I brought his leaf blower and ladder. I Cleaned out the gutters (which is really the landladies job, but wanted to really get them clean). I ran water down them to wash them out and grabbed all the gravel that fell into them from the roof. They are so bad about overflowing with the slightest rain, I knew if I gave them a good cleaning it would last a lot longer. I did the usual cleaning and prep for tomorrow so the day will go smoother. I know it is not expected, but as usual I like to make sure everything is in order. Okay... OCD!!!! There are worse things I could be right now!! 

I finish in about two and a half hours and head home. Frank has fixed a wonderful steak dinner, salad and potatoes. Zack, as usual arrives home thirty minutes after dinner is served. He is happy even though he is very tired. He had a great day with his friends "mudding" in their trucks.  He mentions he is not looking forward to tomorrow and Tuesday (next chemo treatment), but is still in a good mood. We know that he will feel so much better after the transfusions, he always does. Having done all the physical work leaves me sore, but a great sense of accomplishment, not to mention feeling good about not just sitting around. I know tomorrow and Tuesday I will have plenty of time to rest. A new routine will start for us this week. Zack will be going to Asheville every day for the next five weeks, let's just pray this doesn't affect him too much. 

Friday, October 19, 2012

"Such a special young man!"...

We begin our day early at the clinic at 8 am, the nurse inserts the IV into Zack's right arm, takes blood samples and then moves us into another exam room. As we start to get comfortable the nurse re-enters the room and says "Dr S. says to get out of here!" We start to laugh and as we pass the Nurses / Doctors  station Julia and Dr. S are sitting there. I stop to say goodby and ask Dr. S if he is kicking us out because of what I said about Nurses knowing what's going on more than "the doctors".  He said "absolutely!, I'm still trying to cope with the devastation of it all!", We all start to laugh, he continues to share that he is inconsolable  Then he tells me that his wife thought what I said was funny and loved it, because she is a nurse. (in case you missed the story, I was teasing Dr. S when we were in the hospital about how much more the nurses know then the doctors.. with all due respect). I love that this is a place that you can let your guard down, be silly, tease and know that he is getting the best care. We leave the clinic and Zack starts to get in a bad mood.

We drive towards the next stop for Zack's MRI both with and without contrast and also a chest x-ray. All of these are for a comparison for when he starts the radiation. Before we get there we stop and give Rhonda a hug at her work. It's just too hard to drive by without stopping, even if just for five minutes. As always she looks so pretty in her purple sweater, white blouse and black pants, the uniform for Biltmore Estate. She seems preoccupied so I'm hoping everything is going well at work.

We walk into this unique building, It is a childrens medical center. In the lobby is a cute little coffee shop,  when I go to get a cup of coffee, she hands me an envelope to make instant, I thank her kindly and ask for a bottle of orange juice instead. You walk down this long hall with arrows and signs pointing in different directions. Big plaques all over the walls thanking this family or that couple for donating "this room, that room, this building, the furniture, etc." the entire building was built through donations. In the main room is a huge contraption with moving parts, wheels that go up and down, the entire structure, making loud metallic sounds is a interactive piece of art. It is also quite entertaining to the children that enter. One of my favorite signs was so colorful and in big bold letters read : I CHOOSE HAPPINESS!!!

We fill out papers and a nurse comes in and takes Zack back for X-rays first. After about fifteen minutes we were taken down the hall to MRI machine. They come out at one point and ask for his port card. They need to know which port he has installed in case it is one that contains metal. Zack and I now carry a card (like a blood donor card) that shows what type of port he has in case of an emergency.  They are to do one MRI with contrast and another without. He comes out of the exam room in a short hospital gown, his shortS and boots on as well. He tells me he will "beat me" if I laugh!! Of course I chuckle a bit. His moods today are up and down. I tiptoe around him a bit and finally at one point tell him I'm not the bad guy, there is no bad guy here and he is not permitted to treat me like a punching bag, His eyes start to tear up and my heart just breaks for him. I tell him that I just hate what he has to go through and there isn't a damn thing I can do. (A conversation we have had multiple times and will continue to have, I'm sure, in the future). He is called into the room and I'm shown a waiting room near his location. I sit down in a corner chair near an outlet and decide to go ahead and handle the billing for Franks business. I am actually enjoying my new way of handling the billing and bookkeeping. I am able to keep up with it weekly and once home can clean, re arrange or just plain chill! Within an hour we are finished with this part of the day.

We are now instructed to go to the hospital for his CT scan, both with and without contrast. We arrive an hour ahead of our scheduled appointment and they are able to see him which is awesome! I'm told it would be a little more than an hour, I tell Zack I will be in the emergency room lounge (where there are drinks and snacks, but more importantly tables and outlets). The nurse looks up at Zack, it is a waiting room full of people, he then looks at me and asks what the heck I "feed the boy", the room is filled with laughter. Of course it didn't help the man that he was about 5'5" tall standing next to Zacks 6' 5". I leave and head down the hall to the lounge. As I set up my laptop, mouse and settle in with a drink (no, not that kind of drink!) I sit thinking about how smoothly the day is going. Yes, we are having a day full of unexpected tests, but we are flowing through each appointment. Within an hour he enters the room telling me he was ready to get some food, ( he hadn't eaten or drank anything since midnight) I was finishing up the bookkeeping of balancing both the business and personal checkbooks. I was all excited thinking we were finished for the day, but no, Zack's tells me we must return at 2:30 for the contrast part of the CT. They had completed the non contrast and then injected him with the dye. They then told him to go get lunch and return in a couple of hours.

We go out for lunch and while eating  Zack shares a conversation he had with a woman that was sitting next to him while getting the dye in his IV. He said the woman had just been diagnosed with breast cancer and was told she would have to have surgery and chemotherapy. He told me that he explained what he has been going through, what medicines to ask for with regards to nausea  how to stay hydrated, he said he pretty much shared all that he has learned during his treatments so far. When they were finished talking, she told him that he eased her mind so much more, she is less afraid of what lies ahead. He looked at me and said "I just told her what I'm going through, no big deal." He has no idea how much he helps people.

Lunch is over too soon, but we decide to head back over for the final scan of the day. We check in and a the technician comes to get us and shows us to a room that is less crowded. Everyone is handling him with care, looking out for him with regards to keeping him safe from germs. We arrive at the room, it is very quiet as there are no people at all, it is right off the scan area, has a small tv, restroom and yes outlets! I start to watch a show on Netflix that  Lee had recommended and before I get comfortable, a couple walks in. Sherie and Keith, husband and wife for 25 years and absolutely adorable. They are in their late 40's and in just a few minutes of conversation we have all bonded. Sherie is a Mary Kay consultant, has been diagnosed with MS and had just found out that her husband Keith (who is also there for a scan) has been diagnosed with a cancer in a couple of places. Their child has been diagnosed with Aspergers and ADHD. To say they have a full plate is an understatement. Not once did I hear either of them complain! Keith was in the hospital last year for five weeks and she never left his side, family stepped in and helped with their child.  She mentioned chiropractic and how amazing it is, of course I mention where I work and totally agree, we talk about neurofeedback for her son and she is excited because we are speaking the same language. While Sherie and I are talking in one area,  Keith goes over to Zack and I see that they are discussing Zacks treatment and how he feels, etc... Once again, I see Zack totally opening up and talking, with great detail, about his experience, what helps, doesn't help, how to make sure this or that is done correctly. Sherie and I talked the entire time Zack and Keith were in their scans. Keith finished first and came out, he said he could hear Zack sleeping, we laugh and say if you can sleep during THAT scan you must be tired! As they get ready to head out, I receive a business card with Sheries information and she writes down the blog address and promises to keep up with Zacks progress. They offer help if we ever need it. Here they have a full plate and yet THEY are offering to help us! Amazing people just keep entering our lives. Keith tells me that he now feels so much better about everything after talking with Zack. He says I feel so calm now and am not as anxious as I was before. "You have a very special young man there!" Knowing that he has helped yet another person, I am  glowing! Today I have seen a new side to him, the sharing, talking to those who needed to hear from him, confident about what he is sharing, yes, I do have to agree, he is a very special young man! He is teaching us all something and on a daily basis.

I wait about another fifteen minutes and Zack is finished. We say our goodbyes to the technician and head home.  He starts to make calls to his friends about when and where to meet . I of course, must stop at the Salvation Army in Asheville ( a very nice one full of nice clothes). I'm still looking for a dress and low and behold I find three and one for Mom.  I also find a small mini vacuum for the office, every now and then we have popcorn messes and I like to clean them up without having to pull out the heavy artillery. We make it home and within minutes Zack is pulling out of the driveway, heading to Drakes house. I receive a call just before he leaves, it's from the Cancer Center (clinic). My heart sinks, we have already learned that he needs a double blood transfusion on Monday, before and after the radiation treatment, what could THIS be? The news is good, all of the scan results are back and everything looks good! Of course, we know that the cancer is gone, but you never know if there is going to be a surprise around the corner, so this is very good news and a great way to end the week!

Love the one you're with!

Okay, so the day started out with work at 6:30 am. Everything went smoothly, in fact it was quite fun. We had plans to close the office at noon today and I already had appointments set up for most of the balance of the day. I head out to the local hospital where Zack had his original surgery to work out payment arrangements and see what kind of discount they could offer based on our income. (this was the one month that we were not able to get any kind of insurance coverage) Within thirty minutes all the papers were filled out and the outcome was very good with 50% discount. So payment arrangements are set in motion. The lady that I worked with was very nice and wished us all the best, she was not condescending like so many "collectors" can be.

I went on my way and headed to Hendersonville to meet a very dear friend, Karen Ann. She is a Mary Kay consultant and created a fund raiser for Zack by offering us 50% of  her sales for a week, though Karen felt the fundraiser did not do as well as she hoped,  we are very pleased, are always very grateful and appreciate all her hard work. Karen and I had a nice relaxing lunch together and were able to get caught up with the past few months.  When Karen and I finished lunch, I got in my car and see that there were two voicemails. As I listen my anxiety level increases.

What started out to be a fairly easy day tomorrow, is now turned upside down. The radiation was postponed until Monday, the blood tests were moved from 11:30 am to 8:am at the Clinic, then they added a contrast and noncontrast MRI at 8:45 am, for this Zack is not permitted to eat after midnight until the MRI is done, this is at another location 2 miles from the Center. Once that is done, a couple of hours later, we have thirty minutes to grab lunch (his first meal of the day) and then head to the Hospital (where Zack usually receives his five day treatment) where he is scheduled for a CT scan, which is going to be another three hours. So, the day is going to be full. The reason for all of these tests is to have comparative scans before the radiation treatments begin on Monday.

I finish listening to the voicemails, return multiple phone calls, cancel scheduled appointments that conflicted with the changes all while sitting in the restaurant parking lot. In took about twenty minutes of scheduling and rescheduling, reorganizing and then to breathe again.

My next "item" was to going to be so much fun. I drive a couple of blocks to Mom and Bob's house. I "hide" my car next to the tall hedge, walk to the front door (which is only used by the mailman or unwanted solicitors) , knock on the door and as it opens I see Bob, he looks surprised, I motion for him not to say a word, he sends me through the living room to hide behind a curtain. He then goes to get Mom, who was vacuuming in her bedroom and brings her towards the curtain. He points down to the dog that was trying to get to me, she looks at the dog and asks what she is supposed to look at, just as she steps closer to the curtain, I pull it back and she bursts into tears of joy. We both stand there hugging each other crying for what seems to be an eternity. We have always been so close and before this life change, spent every Tuesday together. It took Mom about an hour to catch her breath again. I told her I would never do that again and she immediately said "NO, It was like Christmas, it was so nice to be surprised! I didn't think I would see you for at least another week or so." We visited for awhile then went out for our favorite sushi. I wanted to find a dress so we went to three different shops including our favorite Steinmart, I just couldn't find what I was looking for, so we headed back home. I now feel like I can handle another week of rushing around. I am still so blessed to have Mom in my life and want to take advantage of our time together whenever I get a chance.

On my way home I decided to call my "other" Mom, Lee. She recently had a pretty bad fall and cut her face, which thankfully is healing beautifully and sustained a fracture to her knee, which she just today found out is also healing quite well.  I spoke with Lee all the way home, catching up with Zack's recent appointments and life in general. I know she reads my blog on a daily basis ( HI LEE, LOVE YOU!!!) but sometimes you just need to hear the voice. Today, that was the perfect way to end the day.

Once home, Zack, Frank and I discussed the next few days. Zack is not pleased and is in a bit of a bad mood, but he knows once it's all over, he will have a more normal weekend with his friends, a family get together with Mother in law on Saturday (if his counts are good) and for me, rest on Sunday. (We ALL know what Frank will be doing..... fishing of course!)

Another day spent with loved ones. It doesn't get any better than this!!

Wednesday, October 17, 2012


That's all I can say! Amazing day! Zack did homework all day and got caught up with a lot of it, still has a lot more to do, but is motivated and doing great. He is feeling really well and energetic. He almost seems excited about doing his school work (well maybe we won't go quite that far). Knowing that we don't have to go back and do any kind of treatment or tests until Friday has us all excited. I'm sure my car is even thrilled, the miles are piling on quickly.

Frank and I are moving right along with our respective jobs. The weather has cooperated enabling him to work daily. We are now looking into where to advertise for the Spring, if you don't choose the right type or location to advertise it can be one of the easiest ways to throw away money. Being able to schedule everything (most of the time) around my work has made it so that I'm not behind in anything. Mom worries that I'm trying to be "perfect", but with a little more than a touch of OCD, it is part of my mechanism. I do get rest when tired, some nights I just come home and after having dinner crawl into bed and chill watching my favorite recorded shows. As I was telling her, I can rest physically, but emotionally I get little breaks here and there. The bottom line is, when Zack is good, I'm good!! Typical motherhood behavior!

Zack has a couple more days to catch up on his school work, then over the weekend he will be putting tires on the ATV  and hanging out with his friends. At least that is more leverage for us to get his work done. Again, it's not easy to be tough on him, but we aren't doing him any favors by not pushing him to do his best. He is an amazing young man and watching how he is handling all of this with such grace is a lesson for everyone surrounding him.

We received a call from radiology today and the Friday appointment has been changed to Monday. They will do the preparation and first treatment so I will be going with him. They agreed that he can be there on his own for the other visits. Treatments should take about 15 minutes. The drive is what will take longer, 45 minutes one way.

We will still go to the clinic on Friday for his D-dimer test. (D-dimer is a fibrin degradation product (or FDP), a small protein fragment present in the blood after a blood clot is degraded by fibrinolysis)   In other words, this is the test to determine if there are blood clots present. This is why he is still taking the shots twice a day. They will also see if he needs a blood transfusion ,"should" be a short day, but we never know.

We had a nice surprise today. About a month ago I was talking with a young lady at US Cellular about cancelling a certain service we really didn't need. In explaining our situation (hey, if you'll listen, I'll tell ) she mentioned her step son having had multiple brain tumors and surgeries and how he is now in high school and doing very well. Today in the mail was a hand written card saying that she was thinking about us all and wishes us all the best. As I said previously, the little things now mean so much! Here is a "stranger" and she has taken the time to think about us and send a note. So many wonderful people are out there and we have never felt alone. I can't say that enough! We KNOW that we are loved!!

Tuesday, October 16, 2012

Short week indeed!!!!

Frank had spent most of last weeks "free" time decorating the water feature (our biggest form of advertising) for Halloween. It is so much fun to come home and see the orange pumpkin lights, ghouls, goblins and ghosts. The best part (which kind of freaked me out at first) was the Frankenstein  blue jean clad figure standing next to the mailbox. This is one of Frank's favorite "holidays" and seeing all the decorations reminds me of happier, less crazy times when life was simpler. Having those memories and seeing that he took the time to decorate does my heart good. It is good therapy for us all!  

What a wonderful day! We were able to sleep in late (okay 8 am is late for us). Zack's appointment wasn't until 1pm ,so we were able to take our time, have a leisure breakfast and relax before heading out. We arrive just in time for our appointment, Angie gives Zack his Neulasta shot, takes blood and within one hour we were sent on our way. His counts were well enough for us not to have to return until Friday. On Friday, we are to go to the clinic, have his blood work done to make sure he doesn't need a transfusion  then head downstairs to Radiology and take care of radiation prep which will begin on Monday (a total of 25 - 28 visits), once they are done, we were advised it would take about an hour, we head back upstairs for a couple more tests to check his blood for clots.

The bottom line, "we" will be off on Wednesday and Thursday. Zack will stay at home and get all of his homework caught up, Frank and I will be at work and once the days are over, enjoy nice home cooked meals and relax. 

Zack and I went out to a wonderful lunch together, went to Staples to buy a new chair for his room (he sat in his, reclined and ended up with a broken chair) , then went to the Aldi to buy groceries. By this time Zack was tired and it was in his best interest not to be around a lot of people in the grocery store. I wrapped up shopping in about 30 minutes and we headed for home, right in the middle of five o'clock traffic. We arrived back home in time for him to run up to hang out with his friends for a couple of hours and Frank and I to have a little quiet time. 

The continued Love and support we feel is overwhelming. My phone rings, buzzes and dings off the hook with texts, emails and messages of support. We feel the Love!!!

Monday, October 15, 2012

Do you want the good news, or the bad first

It is Sunday night around 8pm when I arrive back home. I fight the feeling of guilt for the entire ride. I talk with Nancy for awhile on my bluetooth (an ear devise to keep from holding the phone while driving) and can feel her frustration at not being able to help me. She has fixed another awesome dinner and it is waiting for us at the house, but she wants to do so much more. I don't even know what I need, how can I tell someone else how they can help me when I don't even have a clue myself.  I share my feeling of relief  and yet don't feel worthy of an early "release". How could I be going home and Zack can't. It's just not fair. I can go anywhere and he is "trapped".

I walk through the back door and Sidi (my Shih Tzu) greets with me excitement. I start to unload the car, it takes four trips. I have brought home everything so that Frank and Zack have only a handful to carry tomorrow. Sidi and the cat walk in and out the door with me each time, as if to make sure I don't leave again. Once the car is unloaded, I come in determined to crawl in bed. I look around and the house is immaculate. Frank cleaned everything, including the dog! There is my "pile" of containers, suitcases and plastic bags. How could I mess this beautiful house up? There is no way they are coming home to MY mess, so determined to attempt to ease my guilt I put a couple of loads of laundry in. Zack will now have clean clothes when he comes home. I then unpack the clean clothes that were left, this is becoming kind of fun! I repack the "hospital bag" and put it back on the upper shelf in our closet. These are items we don't use in between stays and makes it so much easier when time to head back out. The bag consists of hot and cold drinking cups, two lamps to create a homey look, snacks, extension chords, books, zip locks and toiletries. Once Frank and Zack come home I will wash the blanket and comforter and they too will join the bag. Within an hour everything is put in its place and the house looks just as Frank had left it. I crawl into bed and fall asleep watching a bunch of Miami Housewives acting trashy and yelling at eachother. Yup.... THIS is MY relaxation!! Yikes!

My day started at 6:30 am., just like any other work day. It was pouring when I woke up, so I felt better about Frank being with Zack (knowing he couldn't work in the rain). It was nice getting up, going to work and getting in a full day. Frank and Zack had a rough night only because they couldn't sleep well. Zack said that Frank snored so loud, every time he would start to fall asleep Frank would start snoring.  Frank told me later that the double mattress (the same that I slept on for the duration) had a section deflated in the center, so he got very little sleep. The same had happened to me and I requested another top mattress only to have the same problem, so I gave up. One of the nurses said that they have been getting a "bad batch" lately and that has been a common problem. I , hopefully, came up with a solution for the next hospital stay, I'm going to get one of those accordion boards that is supposed to fit under the sofa to make it firm and put that in between the mattress'. Necessity is the mother of invention for sure!

They make it home by noon. The rain has stopped and Frank was able to get in a half days work. Zack immediately jumped in the shower (he is not permitted to shower when undergoing treatment as he is constantly connected to the IV through the port and it can't get wet). The rest of the day was spent settling in and resting. His mood is very good. He is so glad to be back home and even though he knows he can't go anywhere until his homework is get caught up, he at least feels free!

I come home from work around 7:30 pm and they have Nancy's meatloaf and potato dinner waiting. Frank is in a great mood, making jokes and teasing us both. Zack runs out to greet me and is met by my new toy, a little toy vampire bat that make a Halloween sound. I bought it to remind me of Zack, whom I now call my little vampire to all the nurses. (for when he needs blood?, yikes... if you have to explain....) He tells me he heard it all the way from his bedroom, but still he laughs at it and how goofy his Mom can be at times. We all sit at the table together (HUGE for this family) and talk about Frank Dad (who still wants to go home, but is not physically or mentally capable of doing so). Zack says "oh, I have some good news!", I look at him and BEG for him to tell me IMMEDIATELY!!! WE NEED GOOD NEWS!!! He says that one of the nurses checked and he only has five more in hospital treatments!  "Are you sure!" as I grab my binder full of his medical information. He says "yes, and PLEASE don't tell me if you find something else out, I NEED some good news today!" As I review the binder and count the five day stays, I confirm "only five more stays, you have a total of eight and we are down three already!" We are all excited! He sees some progress! Frank shares his discontent with regards to the bad news, which is that he must have the chemo and radiation at the same time. (We haven't seen each other since that discovery). I tell him, we just have to stay the course, we may not like everything they are doing, but it has been proven successful and we must trust!

As we finish dinner, Frank makes some joke about how he isn't going to do KP (Kitchen Patrol) since he has had to do it all week! "VERY FUNNY!!! You have been ALONE here all week!!!", he laughs as I'm loading the dishwasher. KP was done in ten minutes and I'm off to finish folding the rest of the laundry, put the blanket and comforter in the dryer and crawl in bed to complete the blog.

Tomorrow is the neulasta shot at 1 pm and Friday radiation prep and possible labs. We are hoping to be "off" Wednesday and Thursday this week. Monday Zack starts the radiation, but for tonight...Frank has once again fallen asleep on the couch with the British driving show on the TV. Zack is in his room texting a million words a minute while watching his shows and I am in the bedroom smiling because we are once again all under one roof. Free from needles (with the exception of one anti clotting shot), wires, IV bags, Blood pressure cuffs, thermometers, finger bands, ID bracelets and beeping, beeping, beeping, did I mention beeping? Our mattress is firm, our pillows fluffy ,our TV full of our favorite shows and last but certainly not least, my Sidi and Anubus on the bed at our feet.


Sunday, October 14, 2012

How long is eternity?

This has to be one of the longest stays in history for us, or so it feels that way. Of course Zack more so than Frank or I, who have had a chance to work, drive to a restaurant, the store and basically get out for a few hours of "down time". With one day of double blood transfusions and five days of chemo down, now there is less than 24 hours before he can be discharged. 

This morning Zack woke up, ate breakfast (his eating is better this time around) used the restroom and all of a sudden screamed in pain. When he went to stand up his left knee dislocated out of the kneecap. He was finally able to stand up after a few minutes and make it to the chair just outside the door. His eyes filled with water, the pain was excruciating. Not long after, he started to black out again and had problems breathing. I immediately call in the nurse, who then calls in the Doctor. A chest x-ray is ordered (to make sure there is no blockage which could be the cause of the dizzy spells), they put him on oxygen for a few minutes until they determine what actually happened. It appears that the shortness of breath was from the knee pain, he was able to put the knee back in place (something that also happened a few weeks ago). they took him off the oxygen, took his vitals and once the doctor checked him out,told him the if he didn't "behave" he would not let him go home tomorrow. Of course this is Dr. B. who has a wonderful sense of humor and loves to tease the kids. Zack throws it right back at him and says "try and stop me at the door."

 We are picked up by a nurse with a wheelchair, Zack is told to put on his mask because we will be going into the main part of the hospital for his x-rays. We are taken downstairs through to the staff elevator, around several corners, down several halls into radiology. It takes all of ten minutes and we are again headed upstairs. Once we are back at the room Zack says he is ready to go for a walk. His knee is feeling better and the Doctor advised us to walk around to loosen it up a bit more. He showed Zack some exercises to do to tighten up the thigh muscles, he said it's not uncommon for that area to become weak when staying in the hospital bed for so many days. That is also the leg he will be having the radiation in, though he doesn't think it will be affected because that is not such a tender area.

As we walk around Zack stops at the carnival mirrors. He decides to make faces and try them out for fun. This is the first time I've seen him try and have some fun in days. We get a good laugh for a few minutes, he poses for pictures and then says "okay, lets get back to the room, I'm getting tired." The chemo does tend to zap his energy, so it was nice walking around even if just a couple of times.

We get back to the room and order lunch from Papa John's, They are one of the two places that deliver to the Hospital. Eating out is getting expensive, but the hospital food is less than desirable and when he would rather not eat then eat some of the meals they offer,  we do what we must to accommodate. I just found out that Nancy has fixed yet another awesome home cooked meal for us to have when we return home. This has become her routine. She makes sure that we have a nice meal so we don't have to jump right in and cook as soon as we are back home. Tonight I can go home, eat a quick dinner and crawl into bed ready for the new week.

We get the x-ray results back and everything is clear. The port is in the right location and there are no signs of trouble. This is a relief, even though I felt that was the case. Any of us that have been in extreme pain know how it can literally take our breath away. I see that the longer we are here, the more sensitive Zack is to his body and what is going on. His patience is also getting shorter and shorter, and who can blame him. 

As he finishes his last day of treatment for the week, I prepare the things I'm to bring home. Zack tells me to take as much as possible, he says "you know we'll forget something and there isn't anything we need tonight." So four bags later, I sit here waiting for Frank to take over the night shift. He calls and asks what Zack would like for dinner. Zack is sound asleep from the treatment and benedryl, so Frank and I decide a burger and fries is about the right touch. 

Though it will be nice to be back home again, it's not the same without both my "boys" there with me. Tomorrow can't come soon enough for any of us. Until then, I will go home, slip into bed and watch my shows that have been recording since being in here. Not the best way to fall asleep, but certainly the easiest way to "forget", even if just for an hour or so.