Sunday, September 30, 2012

"THE BIRTHDAY BOY TURNS 17"

The Birthday boy opening presents

"Happy Birthday to You!!"

THE BIRTHDAY BOY
SURROUNDED BY FRIENDS
AND FAMILY

Hans playing with his food
THE PARTY WAS INSIDE
AND OUT SIDE!
FRIENDS AND FAMILY ONE IN THE SAME


AUNT AND NIECE
THE PARTY PATIO
SANDY, ALWAYS IN MY HEART

LARRY, LAWREL AND DEB
OOOOH TOO MUCH FOOD!!

BFF NANCY, STEVE AND ALLIE

SO MUCH WONDERUL FOOD
FROM EVERYONE!



"They" say a picture is worth a thousand words. In this case it is so true. We had such a large group of loving friends and family (not that there's much of a diffence with these folks). Everyone that came has been a part of our life for so many years, some of them even before Zack was born. We all came together to celebrate an amazing young man. (okay, maybe some came for the fish). What an amazing day. Those that haven't seen Zack in awhile were able to see that he is doing well, hear some of his journey and be there to love and support him ( and us).

Most of the day Zack was sitting in a circle of young men, cousins and friends alike, making jokes, looking at his charred car, and laughing about this and that. Frank was busy with Hans cooking the fish, some fried and some grilled, all delicious!! Frank and Jeff fished most of the year to catch enough for today's meal and was it ever worth it.

There were people in the kitchen, dining room, living room, front porch, patio and driveway. It was standing room only, around 30 + people in all.There was fish, hush puppies, potato salad, guacamole (my first try at making it), beans, cakes, banana pudding, rolls, macaroni and cheese, sausage balls, fried mushrooms, halapeno poppers, chips, dip on and on and on..... At the end of the evening there was a little fish, some potato salad and a little bit of cake. Everyone had fun with my Kuerig coffee maker (my favorite gadget I purchased at the beginning of the year).

The energy was awesome! The noise level through the roof! THIS is what we all needed. THIS is what has been missing. We always love to have cookouts with friends and family. We missed doing this on July 4th weekend as we decided it was better to get out of town just after the diagnosis, ( a decision I am so grateful for as we needed that more than anything ).

Somewhere in the middle of the party I noticed the water level was low. I went out and told Frank, we did nothing. Awhile late I went out again and told him it was even lower. Was the well drying up? NOPE another pipe burts under the house. Everyone started to tease about our party "curse". The last party we had a tree nearly land on someone's car, the party before that something else big happened though for the life of me I can't remember what the heck it was. NOW, no water!!! and 30+ people that need to use the bathroom!! YIKES!!!

Everyone went with the flow (pardon the punn). When they needed to use the bathroom, I would run outside and turn the water on, they would flush and the water would be turned off again. All the ladies kept going to wash the pots and platters to no avail. I just laughed!! For once they couldn't clean my kitchen, I needed to wash off my hands so I went to the water feature and got my hands wet. Hey roughing it isn't all so bad.

The party lasted about five hours. It was so wonderul to see Zack having a great time with everyone, we had a chance to catch up and re-bond with friends we haven't seen in months. Zack went to hang out with his friends and Frank crawled under the house to fix the pipe, with no luck. The part he had was the wrong size and the hardware store was closed. Oh well, no water until tomorrow. We've been there before, we can manage.

For now, I will sleep well. It was a wonderful day full of wonderful memories. Tomorrow Zack and his friend go for lab work to see if he is able to continue on Tuesday with his next round of chemo. For today, life was just like it has always been, full of laughter and fun. This was the energy boost we all needed and we count our many blessings.

Saturday, September 29, 2012

More Blessings....

Mom and I had a great day together on Friday. It took me awhile to get in "the groove", but once we started visiting our usual places it felt like I was just there. We went to a couple of thrift stores, had a wonderful lunch of fish and chips at the local Pub, went to the post office and landed in Walmart for some grocery shopping. We managed to take time to see my "other sister", Kathy, (manager at Steinmart) and she gave me the best hug. We haven't seen her since the diagnosis, so it was great to touch base with her and the other ladies Mom used to work with.

These days we spend a lot of time sitting in a room waiting for tests or treatments to be done, so not being used to spending a day running around, at 3:30 pm it hit me. I was all of a sudden exhausted. Mom was keeping up better than me. I'm on this medicine for the diverticulitis and it has me wired at first and then I bottom out in the afternoon. I only have one more day left to take them, so hopefully next week I will be back to normal, (whatever that is these days). We stopped at Krispy Creme (that's right SUGAR BUZZ!) for a break and that perked me up a bit. It was just nice to spend the day with Mom, see Bob and all the little puppies. When I walk in their house, you would think I was the most important person there. I can feel the Love!!

Zack spent the day mostly sleeping, He was tired from the week and had a hard time sleeping the night before. He managed to get some school work done, but when he is that tired, it's hard to fuss at him for not doing more. There is plenty of time over the weekend for him to do more.

It's Saturday, we are getting ready for our annual fish fry and Zack's 17th Birthday. He didn't want a special party, so he just asked us to have our fish fry. Luckily his counts are good, so he will be able to see everyone, of course no one coming has been or is sick, all our and his friends know the danger in that.

Today was awesome! Frank went fishing for awhile. I wasn't able to sleep past 6:30, so I went ahead and got up and started to get the house in order. There wasn't that much work that needed to be done so by noon I was finished and able to sit and watch TV. After a bit of a rest I decided to finish the rest of the third quarter bookkeeping so that I could get it to our CPA early. Now, we never know what is going to happen, so it's best to get stuff done when we have the time. It feels so good to have it all done and ready to go 15 days ahead of schedule. Putting Quickbooks on my laptop has saved me so much hassle and makes it a lot easier to stay on top of it all. Just because "life" have changed, doesn't mean "life" gives us a break. We still have to do everything we were doing before. Someone actually told me when Zack was first diagnosed that I would have to quit my job because I wouldn't be able to keep up with everything. WRONG!! I see that as a challenge, tell me what I can't do and watch me soar! Of course, I am finally learning to rest when I need to, which is not that easy for me.

Zack stayed up at Drakes for the night. He came home this morning long enough to haul off a load of trash to the land fill and help Frank and I install a new ceiling fan in his room. His other was from a thrift store and was impossible to balance. This one is nice and he is so excited that it doesn't dance around. (It's the simple things that makes him happy these days). He was also at his friends house working on the ATV on and off today. They are getting it back in shape, it's been sitting for a couple of years and just needs some fine tunning. He is feeling really well and is excited about tomorrow's party.

I received a call from one of our dear friendsKaren Ann asking if it was okay to do a Mary Kay fund raiser for us. She has put the information on Face Book and has promised 50% of all sales on her site to go to us. She and her husband watched as his mother passed away from bone cancer and wanted to do something for Zack. The blessings just keep coming!

Like I said before, something else is in the works.. but waiting for confirmation.. so I will keep you posted....

I will leave the post with a video of our new friend... a white squirrel that found the food I put out for him. Nature is the one thing that grounds me. The birds, squirrels and yes even frogs are a large part of our landscape. I hope you enjoy!


Thursday, September 27, 2012

We're outta here!!!

As I headed out to work this morning, I was hoping that the day would run smoothly, that my head would be on my work and not my son, that I would get a lot accomplished and leave at the end of the day feeling as though I had put in a full day. It was an amazing day! It went so smoothly. At lunch I walked to our local European style restaurant , where I sat outside in the warm sun and had my mussels and french fries (Belgian comfort food). Once finished I walked downtown to check out Mom's jewelry booth, fluffed it up a bit and then returned to work the afternoon shift.

Frank and Zack headed out early this morning for his Neulasta shot and lab work. Originally we had been told we would also have to go in tomorrow for labs and possible transfusion. Most of the visits have ended up being half to a full day at the Center. Today, they are in and out in two hours. Imagine my surprise when Zack calls and tells me that we don't have to return until Monday because his blood count, platelets etc.. all came back well. Music to our ears! 

I immediately email Mom and tell her to get her shopping list ready, we are having a girls day out tomorrow!! A day without cancer. A day without bookkeeping,  medical bills,  phone calls, worries,  problems. Just a simple day of grocery shopping, thrift stores and relaxing lunch that doesn't involve a bag ( ie fast food).

Zack will have a normal day of school work. NOT his most thrilling of days, but since picking up the ATV tonight from Linda's house I have a new way to "threaten" him. No school - No ATV.  Hey a Mom's gotta do what a Mom's gotta do. 

We are having a fish fry / Birthday party for Zack on Sunday. We are so excited, this will be our first party since the diagnosis and it will be wonderful to be surrounded by all our friends and family. For the first time in weeks I am feeling great, Zack is full of energy and feeling well and Frank is excited to cook all of the fish he and Jeff have been catching for the past few months. It is a time to celebrate! My "baby" will turn 17 and I am so proud of the young man he is. 

More awesome blessings came today, but I don't want to jinx it so I'm not going to share until it actually happens. You will just have to wait and stay tuned...............


Wednesday, September 26, 2012

"Unremarkable"

X-ray technicians have a saying "unremarkable." This is when they don't find anything "bad" in "your" x-rays. I kind of like that term. When I asked Zack what to put in my blog today, he said "I went to Asheville, had my treatment and came home."

"Unremarkable" is immediately what came to mind. I then started to think. How nice it is to have an ordinary day with nothing remarkable and yet, how different is our world when an ordinary day involves going to work while your son goes with his friend for his chemotherapy treatment. When the highlight of you and your sons day was leaving the clinic at 1 instead of 6. When you are relieved to find out that he isn't as dehydrated as you "thought" he was. I rather enjoy an unremarkable day!

I arrive home from work and am immediately go on my laptop, send business statements and balance the checkbook all in a matter of thirty minutes. The phone rings and it is a call from Linda. She had received a phone call from Floyd yesterday. Big John owns an ATV (all terrain vehicle) and since he can't ride anymore, it had been promised to Floyd. Floyd called to ask Linda if it was okay with her, he would like for the ATV to go to Zack. He said that Zack has been through enough and he knows this would really cheer him up. Linda went to see John today and told him what Floyd said, John agreed and said that he wanted him to have it now for his Birthday! I held the cell phone up on speaker and Linda told Zack. He was speechless! He just sat there with his eyes and mouth wide open. He thanked Linda over and over again. He looks at me and says "Mom, I need to Thank Uncle Floyd too, this was supposed to go to him!" He also said that even though he was afraid to see John again, he needs to go and see him and thank him in person. Since we have left this decision up to him, if that's what he wants, I will be glad to take him on Friday after his labs.

So, in the midst of all the unremarkable things today. There was one remarkable surprise that lifted the spirits of one young man and for this we are grateful!

Tuesday, September 25, 2012

"Try being ME (Zack) for a day!"

Zack and I head out early this morning. It is day one of the beginning of the third month of treatment. our appointment is at 8am and we have no idea what the traffic is going to be with school and work. Zack is in a grumpy mood, he tells everyone it is because he is not a morning person, but that is not the entire truth.

We arrive at the clinic and are greeted by the ever cheerful group of Nurses and Doctors. I had been teasing Zack in the waiting area, trying to sit on his lap, tickle him, anything to get him to smile. He had an empty plastic bottle in his hand which I grabbed and started hitting him with. He jumps up and we are chasing each other around the waiting room laughing. This continues down the hall after they come and get us. Everyone is saying how cool it is to see us cutting up. Our nurse tells Zack how she lost her parents at an early age and how cool it is to have the parents he has. (Smile). He, of course, then offers us to the nurse.

We are asked which room we would like. Zack doesn't care, so I ask for the room with the desk. I decided last night to download Quickbooks onto my computer so I can do the bookkeeping while in the clinic or hospital. I have gotten so far behind (one month) that I took me two full days to become current. Since I know today is going to be a long day, I was hoping I would get everything completed. (which I did!)

They start immediately with IV fluids. It is very important to have his fluid levels high. They can't start his treatment until he is fully hydrated. He had already drank three very large glasses of water before we left the house, and then had two SOBE drinks on the road. Angie is our nurse today, but everyone is coming in to talk to Zack, check in on him, see how he is after the car situation. I just don't know how Angie does what she does. She takes care of all these children each day and on her days off she cares for her Mother and Father who is not doing well with his cancer battle. This woman is surrounded by this disease and yet she is always bubbly and eager to be there for everyone.

The day is long. Zack sleeps, watches TV and sleeps some more. He works on his school work a bit, but the treatment and Benedryl keep in tired. I went to Sams Club for some much needed groceries, non refrigerated of course, ( it will be hours before we are home) and head back to Zack. Shortly after I  arrive Rhonda calls and is coming and picking up lunch for us all. We have a nice, but short, visit as she only had 45 minutes until she had to return to work.

As Zack sleeps, I work on the bookkeeping. As the day progress' his color leaves him again, his mood gets worse, he is tired, nauseous and ready to go home. At 3 pm we think we are almost out the door, but Angie comes in and tells us it will be 6 pm before we leave. They want to make sure he has plenty of fluids in him before going home. They make him drink this really nasty tasting stuff (he actually hold his nose while drinking it). Zack sleeps until it is time to go.

Zack machine starts to beep, a noise we are getting used to. He had already figured our on the first day how to silence it and call the nurse. At least that way we don't have to hear the darn thing. Angie comes in and that is our cue that time is up. I gather all my things, put them neatly into my computer bag and by the time I turn around, he is standing there ready to go. He tells me to take my time, but I know he wants to run for the door, so I rush even more.

As we leave Angie comes back and tells us we must be there tomorrow at 8:30am, (for his second treatment) Thursday at 9 (for his Neulasta shot) and Friday at 8 am ( labs and if needed another blood transfusion). NOW He is pissed! " Why do I have to come back EVERY DAY? I wanted to go hunting on Friday!" It is heartbreaking not to be able to look at them and say NO, he needs a day off. But we know the importance on staying on course. I tell him that perhaps Friday will be a short day, he simply says he doesn't care.

When we arrive home, Linda (mother in law) is there. We had asked her to come as we bought her a small gift as a Thank You for taking such good care of  Franks Dad (who is now in a permanent nursing home, still smoking away and telling his jokes to anyone who will listen). At my request, Frank had called her earlier asking if she could come to town, in her deep Southern accent her response "Oh Lord, what's she gonna do to me?" talking of course about me. Linda and I have always had a funny relationship, we call each other names and can talk on the phone for an hour.... well LINDA can talk on the phone for an hour.  While Linda is visiting  Drake stops by to check in on Zack. He is so cute, he walks in, gives me a hug and says "hey Mama." You can just feel the Love around us.

As everyone leaves, Zack starts to tire again. He must drink another dose of that yucky stuff (not the medicare term) and later tonight another blood thinner shot. Another day is done, tomorrow Chris (one of Zack's friends) is taking him. Let's hope it is a smooth day and he is home sooner than expected.



Monday, September 24, 2012

"My life is a country song"........

"MOM, I'M OKAY!"
The "V" is where they cut to gain access
This USED to be a battery
Well, as great as yesterday was for Zack, who spent the entire weekend with friends, running around, driving his car and being a typical soon to be 17 year old (This Sunday is his Birthday). Today was just the opposite.

Thank God he is okay. Zack called me at work this morning asking if he could drive to get some breakfast (nope didn't make it to the store yesterday either, shooting for tomorrow). On his way to town he noticed white "smoke" coming from under the hood. As the car started to stall, he was able to pull over into the closest driveway. He thought the smoke was steam or perhaps oil that was on the motor. He tried to restart the car again, and all of a sudden noticed the '"steam" turning black. He jumped out of the car, went to the hood where the center was already scorched. He slowly lifted the hood thinking it was a small localized fire that he would be able to control. Once he did so he saw the flames all over the entire motor and slammed the hood down. While running to the house where he had parked he called 911 and knocked on the door to see if they could get him water, no answer, so he turned around and decided that he better get further away from the car. His fear was the car exploding since he just filled the gas tank.  He ran to a nearby church and waited until the Fire Department showed up.  As you can see by the pictures, the had to cut into the hood with their special saw to get the hose close enough to put the fire out.  
This USED to be the motor
He called Frank as he didn't want to bother me at work, (even through all of this, he was STILL thinking about someone else!). Once things settled down and it was time to get the tow truck, Zack called me at work, he says the three words every parent is glad they hear and yet fear "Mom, I'm OK." He explains what happened, he is crying and angry at the same time. He tells me Frank is really angry that this happened to him. Frank then calls me to get a tow truck, since we have AAA I immediately call them and then the insurance company. Luckily I had obtained Comprehensive which covers fire. We are not sure yet what they are going to offer for the car, but we are advised from our agent to get all of the receipts together of all the improvements. It's almost time for me to leave work, but I ask Zack if he needs to me to come there or home right away. He says "No, we'll wait for the tow truck, have the car brought home, I'll see you when you get off work."

They get the car home, Frank heads back to work promising Zack everything will work out. Frank is very angry. He is done with things like this happening to our son and not having control over any of it. Zack get ready for me to pick him up for afternoon appointments. I call him around ten minutes before I leave work so that he is ready to go grab lunch. No answer, No answer at home (after three times),  Every call on his cell goes straight to voice mail! Doc Nancy sees that I am freaking out, she tells me to go go go... "call and let me know he's okay." I run out the door, drive as fast as I can, arrive home, run inside and nothing, no one. "Zack, Zack!!!", I run to the front porch "Zack?, ZACK WHERE ARE YOU??????" still nothing. The dog looks at me as if I am crazy. I run back to my car and snap it into reverse, I decide it is faster to drive to the neighbors house and pray he is there, while backing up the drive I see him running towards me waving his hands. I pull back down the drive, jump out of the car and he runs to me and says "I was at Raz' house."  I look at him and as he walks up to give me a hug I start to sob, I mean every tear I have held in for a month!!!  He says "oh Mom, I'm sorry, my phone died and I went to Raz to tell him I'm not painting my car, I emailed my teacher already and told her the Senior project would be different too, I didn't mean to worry you." Here he stands all composed and I'm falling apart! I look at him and remind him how damn proud I am of him and how he handled everything.

He then shows me the car and calmly tells me everything that happened. It's a miracle he didn't get burned opening the hood. I now realize that for the past two nights I have not been able to sleep. I would wake up with this sense of "doom" and couldn't figure it out. I even saw him in my dream driving the car and something happening, but couldn't make out the details. The minute I got the call the feeling was gone. 

We head out to the Cardiologist and Cancer Center. Zack must have a EKG and Echo today to make sure his heart is doing well. One of the treatments (actually tomorrow's) can possibly do some damage so they monitor it closely. The tech tells us that she can't tell us what she sees, but assures us that "I'm not making any emergency calls!" We are pleased, for lack of better words, and head out to the Center. Once there the usual routine begins. This time the lab work to determine if his count is well enough for the next treatment. Within the hour we are told that everything looks good, they do not yet have the report back from the cardiologist, we tell Julia what the tech told us, so she says "oh, well it's probably okay then, they will send us the report in the morning. Be here at 8 am!

As we head out, Zack starts to liven up a little bit. We stop by Biltmore House Guest Services to see my sister. We fill her in on all the latest. She offers to bring us lunch tomorrow while at the clinic. Something to look forward to. As we continue our drive home, Zack starts to make up a country song. He says his life has become a Country song. I can't even remember the words he and I came up with, but we were laughing so hard he almost spewed his drink all over my car. It felt so good to laugh, his mood got better and he started talking about the next steps. 

The one thing this kid has learned and been taught is, "life can throw a bunch of crap at you, but you can survive and know that something better is around the corner." It always has been for our family, so why wouldn't it be. 

Tomorrow is another day. We are on course with his treatments which means we start month three!
 

Saturday, September 22, 2012

the tortoise and the hare... with update...

Even though I had a rough night's sleep, my pain level is way down. I realize that I did the right thing by going to Urgent Care. I am determined to force myself to sit and relax today, no matter how crazy it makes me. My son, on the other hand, wakes up with a bounce., he is full of energy (which is common with blood transfusions)  He is ready to go to his friends and work on his car, he just wants to get in his car and go anywhere.

One of our dear friends, Hans (an AA pilot who lives in Cary, NC) came to visit yesterday and spent the night. He and Frank were in the home office reviewing our mortgage and how to go about refinancing our house. Not my ideal way to wake up, but if it helps Frank feel more secure with our financial situation, I'm all for it.  Hans heads out to meet with his brother as Zack runs to the local eatery to grab us breakfast. (as usual the frig is empty, that's one thing we keep forgetting to do). I set up my laptop in front of the couch, turn on the TV and get settled in for the day. (My state of mind is so weird that it took me all day just to write the two blogs). 

Zack returns with breakfast and is so excited about running out again he leaves his two biscuits on the counter. I immediately call him, he can't believe he did that, we both laugh and agree to meet at the top of the driveway. He runs off to hang out with his cousin Darrick until he had to leave for work, then he moved on to the next friends house and it's pretty much been the same all day.  He came home long enough to eat dinner and we finally convince him it's time to stop. He has all this energy, but we don't want him to get worn out either. 

He returns home to take a shower after another short run to his friends house and asks to spend the night at Drakes. I'm already in bed and it's only 8 pm.  I'm in a bad mood, angry at everyone and everything and don't even know why. All day I'm emotional. Happy, Sad, Angry and Agitated. I'm felling better, but want to be alone and not deal with anyone or anything. Zack comes in the room to tell me of his day. He is so excited about everything he has accomplished, it's so good to see him this way. He looks at me and says "Mom, are you okay?" Well of course, I start crying and apologize. He shouldn't have to see me this way, he shouldn't have to worry about me. I tell him I'm not sure what is going on, I've been emotional all day. He reaches out his hand to me and tells me "Everything has probably built up Mom, this has been a rough week." He is such a sweet gentle person, going through all his stuff and yet sympathetic to my emotions. I agreed with him and teased about how he is going to make it worse if his dirty greasy hands leave a print on my bedspread, we both manage to get a good laugh in. I know it's more than that, it's something I don't have control over. I know my body and know when I am chemically imbalanced. Right now I feel like I did years ago when I was on steroids for poison ivy. I research the medicine and am reading it all out loud, Zack says "Mom... that's the same stuff I'm on for part of my treatment", one of them has a metal taste and has the same possible side effects. He tells me "hey, you kind of know what my stuff is like." I remind him that NOTHING I am going through is REMOTELY like what he has to endure. Part of him likes the idea that we have one of the similar medicine. In the research and see steroids mentioned on one of the meds, but I really don't know what I'm looking at. I decide to chill and call the pharmacist tomorrow.

We go over his school work and sync our apps on our phones. My list of 8 over due items, goes down to 3 which he plans on finishing tomorrow evening. With his Mom again laughing, Zack decides to make a quick exit. He takes his shower, comes into the room, gives me a hug and is out the door. Frank is chilling on the couch after putting in a full day of outside work and vehicle repairs, so all is quiet. I am hoping for a good nights sleep and waking up in a good mood.  Tomorrow is business bookkeeping... if I feel like it!

Update on Frankie Bones: Me... being me.... called and talked with the manager tonight. I explained what happened with Zack and his baseball cap. She apologized and said "there is no reason why he should EVER have to explain his condition!" she went on to explain that they have a woman that comes in there who is also under treatment and has told them she will not take off her hat, they welcome her and offer her a table in the lounge (which is where we sat). She said we would never allow someone to leave just because of the hat "rule", the owners are simply trying to present an image. I told her on her website introducing "Frankie" he is wearing a Fidora which could be misleading, she said "even Frankie checks his hat at the door, BUT your son will NEVER have to do that again!" She said she would love the opportunity to meet him and apologize in person and because she knows the appetite can be off with treatment, she would love to give us all free desserts. The bottom line: They have a rule, but it's not iron clad and we can feel welcome there anytime. I told Zack and he was like "Cool, it wasn't really that bad once I got used to it Mom, but Thanks for calling."

Friday, September 21, 2012

"I'm just here for the ride!"

So our "Fun" Friday didn't turn out quite so fun. I wake up for the second day with even more pain in my intestines. Child birth was easier! Zack was trying to get a couple of his friends to go with him to the clinic, but without luck, so I buck up! he is my priority. I decide I can wear my mask, my temperature is normal, so I don't feel I'm contagious. I call Mom and tell her we are on our way, (she too has a doctors appointment right around the corner from the clinic). I'm moving very slowly, with every move is a sharp pain.

We arrive at Moms house'a just in time to learn that he Doctor had to cancel her appointment. She decides she wants to come along for the "ride", little does Mom realize what today's ride was going to be. During the car ride, Mom tries to convince me to go to Urgent Care (I had already called my OB, but he couldn't help me). I tell her, "let's just wait and see".

We arrive at the clinic. Zack is all excited, he "knows" we are going to be in and out of the clinic. Just taking his labs and we are out heading on to the fun part of the day. Wrong!!! Within an hour Melanie walks in and with a sad look, tell us he needs two units of blood. She tells us that she is surprised he is doing as well as he has been. Since he doesn't like us to mention his color, I have almost stopped looking or reacting. He was quite pale, no color in his lips at all, but his energy level has been great so we are surprised at the news. He tried to be cool and said "okay," but the minute Melanie left, his eyes teared up and he covered them with his hat. He became angry and said he was fed up with "surprises". 

Knowing that we were going to be there for several hours and the pain increasing, I decided to go ahead and go to urgent care. Melanie told me Zack was getting Benedryl which would pretty much knock him out and she would make sure Zack was okay.Mom being there added another level of security for me. 

Sisters of Mercy Urgent Care was only 9 miles away, so if anything I could run right back. I knew at this point I needed to do something, this wasn't getting better and I better not end up in the hospital, that wouldn't help anyone! The entire staff at Urgent Care was so caring. They did the exam, took three x-rays and determined that it was diverticulitis, their original concern was a blockage but that all checked out well. The treatment given was two different antibiotics and if not better by Sunday I am to go to the ER. 

I return a little over an hour later with lunch for us all. Zack is half asleep, but the minute I walk in with food he perks up. Mom is probably starving at this point, but doesn't let on. I was able to get my prescriptions filled downstairs at the clinic. The pharmacist sees me and remembers that Zack is my son. I have only had his prescription filled there once, that is the kind of personal attention they offer. Zack continually was having his blood pressure and temperature monitored. He was running a low grade fever (100 degrees for him means hospitalization), so Melanie was getting concerned, then she realized that Zack was sitting in the recliner with the massager AND heater on. Once he turned off the heater his temperature was normal.  We all had lunch together and once finished Zack feel sound asleep. I laid my head on Mom's lap and fell fast asleep as well. An hour or so later, Melanie comes in to tell Mom and I that there is an empty room next door so Mom can sit in the recliner and me on the couch. It will be about an hour and a half more. So, she and I moved into the next room and within a few minutes I was snoring so loud the nurses heard me outside in the hall. Once the treatment was completed we were given the okay to leave with the next appointment on Monday for an Echo Cardiogram to be followed with more lab work. Once we have the results of the labs, we will know if his next treatment starts on Tuesday.

Zack is, of course, anxious about getting back home to work on his car. Realizing it will be too late for him to work on his car by the time we get home, we decided to grab a bite to eat at Frankie Bones on the way. I'm still in a good amount of pain, but am hungry as are Zack and Mom. We walk in and not being 100% "there" a lady walks up to Zack and asks him to please remove his cap. Zack doesn't go anywhere without it on. Mom had asked him earlier in the day if he misses his hair, he tells her "not as long as I have this!" and points to his hat. I'm confused, normally I would have walked out with them in tow, but not feeling well, it took me awhile to realize what just happened. He removes his hat and are shown to a booth. All of a sudden his mood changes, I ask him if he's okay, he points to his head. I apologize to him and tell him he looks handsome with or without it. We finish our meal and upon exiting Mom stops to talk to the hostess. She tells her about Zack and how humiliating it was for him to have to remove his cap, how what they are asking does effect certain people without their knowledge. At eighty and pretty much deaf (she doesn't want to converse much with anyone because she can't hear) she kicked butt! She was standing up for her grandson and stood in when I couldn't. The day may not have been "fun", but I'm so glad she was along "for the ride". She is so much more valuable than she will ever realize. 

Thursday, September 20, 2012

No, It's not Halloween.... yet!

Today was an amazing day. Not for me health ways, but for seeing again all the amazing people in our lives. I woke up this morning with intense intestinal pain. It subsided off and on throughout the day, but grew with intensity tonight. I took a nice hot bath hoping it would relax my muscles and I all of a sudden had the chills, so I took my temperature. It is 100.3. I know that is low grade fever, but since coming home I have sequestered myself to the bedroom. When Zack wants to tell me something, he stands at the door and talks loudly. I am wearing a surgical mask in bed and let me tell you, I look so glamorous!  Zack has his labs tomorrow, since I 'm in this condition and we don't and can't take any chances with him, he is going to get his friend to go with him. Hopefully by the time I need to take Mom for her appointment I will be feeling better. If not, we can't take chances with her either and will need to re schedule. I really really hope I feel better, I need Mom time with my own Mom!!

Sue, my friend since High School (1974) and I met today for some catching up. This is the first time we have seen each other since Zack's diagnosis in June. She and Nancy are working together on a fund raiser for Zackman. She took me out to lunch and we then went to the bank and opened a special bank account for Zack's fund raiser. Sue and Mark made a generous donation to open the bank account and she and I both sat in the bank nearly in tears as we were hugging. We feel so blessed and spoiled right now. Who would have thought that she and I would still be as connected (ME) for so many years and would be sharing this journey with us. Their plan is totally cool, but not mine to share, so you will all have to just wait and see. But it's going to be fun, that I know for sure. 

Zack has had a couple of very good days! He is feeling good and continues to get a lot of his school, house and car work caught up. We are so glad he is having a good week, he has had so many rough times of late and it's time for him to have more good days. He received his grade for one of his first tests and got a 97. The teacher was very pleased as are we!

Well, better sign off for now. Need to get some rest and let my body heal!!! Thank you again for your continued prayers, emails, texts and phone calls!! We KNOW we are not alone!

Wednesday, September 19, 2012

Who opened the roast beef?

Now THAT'S how I like to start my day. Ask me something simple! I'm at work, it is 7 :30 am, the phone rings. My husband says "did you open the roast beef?" "no", I reply, "well who did?, Zack didn't, I didn't." Okay... "um, why?", "I'm not sure when it was opened and if it's still good". "oh, well, smell it, if it stinks, don't eat it!" "Okay, Thanks".... Nice, easy and simple. Of course me being me, I turned it into the question of the day.  Doc Nancy walks into work "did YOU open the roast beef?".... another thing we can laugh at.

It's the simple questions that I now treasure, where is my coat? do we have dog food? who opened the beef? The tough ones are out there with us every day as a reminder. When is my next appointment? Will I need a transfusion today? Will I be in the hospital for my Birthday? Is he going to wake up tired or energized? When are you paying the medical bills? 

Zack calls me this morning and asks to be adjusted. This is the first time he has felt good enough to do so.  Zack is excited when he arrives. Docs Steve and Nancy haven't seen his new car yet. Once the adjustment is completed, we all run outside to inspect the car. Zack was so proud, he was on his way to get new wiper blades and was going to clean it all out later in the day. He was showing off the front seat upholstery that was his gift from Floyd and Shawn, he was showing off the trunk, the original back seat covering. It was so nice to witness his pride as he was telling them his plans to paint it for his Senior project. 


Father & Son, Savannah  2011
We have answers to everything, well almost everything. This morning Frank wakes Zack up to go for a walk. We were told that he needed to walk more to get the blood circulating and help the cells rejuvenate. Zack is grumpy (he never has been a morning person) and they get mad at each other. I come home (the little peace maker, like all us women tend to be) and Zack immediately starts to complain. "Dad is grumpy today", "why?", "I don't know, but I'm tired of him being grumpy". I go on the porch where Frank is sitting reading his book, drinking his beer and smoking his cigarette. (hey don't judge, wouldn't we all want to be doing that right about now?) I lean over to him and ask "are you grumpy?". He answers with his usual "should I be?", "NOPE".. I go back into the home office where Zack is still sitting in the corner chair. I tell him that Dad is not grumpy, maybe you misunderstood? I ask "what happened?" "well, he came in and wanted me to go for a walk this morning and I don't want to walk in the morning", "Okay, do you realize that Dad is doing this for YOU, he doesn't really need to walk, doesn't really have the time before work, but because that is the ONE thing he can do to help you he does?" " Maybe just get up, go for the walk, then when you are done, come back and rest, if you feel you still need to  OR ask Dad if you can walk with him in the evening when he is back from work". "okay I'll do that"  I explain to him that many times we feel that we have little or no control over what he must go through, so when we feel we can do something that we know will help his well being, we jump on it.  Once done with the conversation, I "report" back to Frank. IF Zack doesn't walk in the morning, then he will go in the evening. He is agrees to the compromise. But not without me telling both of them that THEY need to talk to each other and learn to communicate better. (Yeah right that'll happen! A soon to be 17 year old and his Dad communicate!)

Zack's English teacher, Ms. O. came out to the house tonight and went over all of his work. She showed him how to use the new programs that his class is working with. She brought  him a portfolio to use as an example for his Senior Project.  Zack was all excited and energized when she left. He was telling me that he now understands a large portion of what he has been missing. Ms. Owen said that Zack is actually not behind which is absolute "Music to a parents ears."

We end the day with a wonderful dinner prepared by Frank and Zack. Tomorrow will be just another regular day with work for Frank and I and schoolwork for Zack.  There's just one questions left unanswered. Did YOU open the roast beef?"

Tuesday, September 18, 2012

I'll take medical questions for 100..

A very dear family friend sent me an email with questions. I'm so glad she did. Her questions are valid and when you are so busy making it through another treatment, another shot and another day you tend to forget the questions or even the answers. The question was based on yesterday's comment that Zack's numbers were "good" and if good why the transfusion?

It was interesting because today I received a phone call from a nurse from a subcontracting Oncology Group working for Core Source ( Inclusive Health Care) which is Zack's insurance company.  What this nurse does is make sure that Zack is having the right treatment, having the right care with regards to his treatment and help with co pay, gas money, pretty much anything to help Zack and us with regards to his diagnosis. One of the first things I asked her (since I wasn't at the clinic yesterday to ask) was about the blood transfusion. Melissa (the nurse) explained that red blood cells rejuvenate every 120 days, they are responsible for the nutrients and oxygen. A "normal" person can reproduce the cells with no problem, but when a person is undergoing  chemotherapy that  kills the red blood cells, and In her words "your son is on a very strong treatment, so his body has to work twice as hard to replenish the red blood cells."  The low blood pressure is also a side effect of the treatment and is a result of low oxygen.

She tells me that part of her job is to look into the treatment he is offered and make sure that it is the right course of action for his type of cancer. When I asked where they stood in that report, she said they were right on target with the treatment. Another part is to make sure that when presented with bills, Zack is actually receiving that type of treatment. She said unfortunately, many facilities charge for items that the patient never receives. I assured her that I too am looking at the bills and comparing what was done. But then again, I have always done that, whether I'm the one paying or insurance, to me there is no difference. She mentioned anorexia ( I know, sounds funny when you think about Zack) but she said that the patient can get to the point where they don't want to eat, so make sure they eat several small meals, no fresh fruits and vegetables because of possible bacteria that his immune system can't fight. 

A lot of this we already knew, but it is nice knowing there is an "outside" source looking out for us.  Melissa said she is going to contact the American Cancer Institute to see if they can help with some of the medical bills for the first month which are not covered by any insurance. She mentioned Zack not making it into the protocol which could have helped with so many things. I told her that we didn't even know about their insurance until Karen (our social worker at the Clinic) brought it to our attention. She said she is sorry that the case workers in both hospitals didn't advise us about them. She was surprised that Mission didn't know about it and is going to look into it. 

Zack's energy came back today. He was setting up his school work so he can get it done. His color is still way off, it's hard to look at him when he is so pale. He is loosing weight, but his spirit is good today.  I wake up each day and can't wait to see the little sparkle in his eyes. He wants to get out of the house, drive his car and who can blame him.  He asks if he can run up to Drake's house to see the new addition to the family and after seeing them all, decides to go with Drake to see Drake's grandfather. The problem is, he "forgot" to tell me he was going to another location. Nancy reminds me that this is what "normal" is, I have to laugh. She is right, We want his life as normal as possible. I tend to keep him in a bubble and though that must be the case at times, he is okay to go and see his friends. Some part of his life must continue as it was.

Tuesday's are my days off, so I made it my mission to get the house back in order. Floors were washed, waxed and now sparkle, laundry completed, I even managed to go through my closet and purge items I know longer need. Frank hasn't worked in a couple of days because of all the rain. It's been nice having the three of us here, running around doing out thing. For a moment, we forget what we are going through, what Zack is going through. The texts, phone calls and emails remind us all that we are not alone and we are so grateful!

Monday, September 17, 2012

Let there be peace on Earth and let it begin with me...

What should have been a thirty minute shot of vincristine today, turned out to be an all day affair. Frank and Zack headed out to the clinic for his 9:30 am appointment. Once there, they gave him the shot, received the results of his labs which all showed that his numbers were good. His blood pressure became very low and all of a sudden he blacked out again, like at the hospital. They determined that he needed a blood transfusion. So, unprepared to stay the entire day they settled in. The blood didn't arrive until 3 pm. Frank ran out and got their lunch (Zack was able to eat only half), later he went out to buy a sweatshirt for Zack as he became very cold in the clinic.

Zack was frustrated, he wanted to get back home. He just left the hospital! He doesn't get mad often, but today, he was pretty much done with it all! After spending the day at the clinic, he and Frank arrive home around 5 PM. Within the hour one of his teachers is at the house going over his psychology lessons. Ms. G. explained how nothing is pressing, however, knowing how he likes to procrastinate she encouraged him to just get his work done. Breaking it down in one class a day, he could finish his work by Friday's and have the weekend to work on his Senior project. Well, it all looks good on "paper". We'll see. I have faith in him and the teachers.

I was able to stay focused at work and know that Zack and Frank had everything "under control." Because it rained all day, Frank's work wasn't affected by taking Zack for the day. It's amazing how easily, we have found the perfect balance with regards to whom can take Zack and when.

Tonight we declare a "fix your own meal" night. as we have left overs from yesterday's wonderful meal. Zack lays in bed, half asleep. He finally comes out to fix a plate , "hey I offered but he said he wasn't hungry". Frank sits at the table eating dinner while reading his book, me? Since I have completed watching the entire "Greys Anatomy"  series, I have moved on to "Damages". I need the distraction and having a series to watch, gives me something to look forward to no matter where I am. I can always "hide" by putting my ear phones in and watch the show. When doing so, no one is around and I am in my own little protected bubble.

The evening ends with me making amends. There has been some family issues that needed to be resolved with extended family.  I finally decided I was tired of being angry, hurt and in turn being hurtful! One phone call and we are back on track. Zack was teasing me about my "conscience", I told him I don't want to go to bed with an angry heart, it hurts everyone involved and that is not a way to live. No matter where my anger comes from, justified, not justified the only solution is to resolve it. Now, having made peace I can go to bed and sleep peacefully. Tomorrow is another day, and I pray Zack's energy will return. I am so glad that we have no where to go, can stay home and get caught up with things, plus rest. 

Sunday, September 16, 2012

Home again, Home again

Zack wakes up ready to go home, as am I. Though he didn't have as bad a reaction to the treatments as before, we are ready to be back to our normal routine. Rhonda asked that I meet her at the hospital cafeteria for breakfast and since we don't yet have our "walking papers", Zack tells me he will let me know when we do. We meet in the lobby and walk down the long halls to the Cafeteria.  Rhonda remembers it from when Mom had her surgery, but I think it was in St. Josephs. Hospital halls all seem to look so similar, you forget where you have been before. I don't remember the photos when Mom had her surgery. While eating breakfast I see Chris, he is Zack's day nurse. He tells me that Doc S. has discharged Zack, all he has to do is sign the papers. 

Rhonda heads out to meet her sons at Biltmore House (where she starts back to work on Monday) and  I'm headed upstairs to bring my boy back home. Zack is discharged at 11 am. We are already packed and ready. All we have to do is have Chris remove the IV from Zack's port and head downstairs. On the drive home, Zack was quiet. He wasn't feeling well from the drive and was anxious to get home. The closer we got to the house, the more he talked. It was kind of funny. I knew he was getting excited about being home, seeing his car. Unfortunately it was short lived. We ate lunch and he is ready to head out when I stop him and tell him school work first! This is when I hate to be the heavy, but he knew that was going to happen and as it turns out he "thought" I wouldn't follow through. He went into his room and has been doing his work, well most of it any way. He is also napping in between.n

It's hard to believe that tomorrow is the start of another work week. Frank is taking Zack to the clinic for his Vincristine shot so I won't have to run back to Asheville again so soon. I am hoping for a normal, steady day. I need normal. We all need normal, even if it's just for one day! 

I get a call from Nancy. She, Steve and Allie fixed us a meal fit for a king. They brought it over shortly after the call. It consists of Chicken Parmesian, pasta, broccoli , garlic bread and fresh made peanut butter brownies. How nice it is not to think about dinner. I have been eating out so much my body is screaming for "good" food. Tonight, thanks to the Cagen clan, we will have just that. Too bad Frank and Zack won't get any. I know... I'm a clown!

I will sign off for now, eat the delicious feast and go to sleep in my nice,warm, comfortable bed. We are down one more month of treatments and our boy is still an amazing teacher to us all.

Saturday, September 15, 2012

"Good Morning Sunshine"

"Good morning sunshine!"...This is how my son greets me at 7:30 am. with very little sleep and four days in the same room without seeing the light of day. Last night was rough for him. His pulse ox was down  (oxygen levels) so they put a monitor on his pointer finger. Everything he is connected to has wires, every time he gets up to use the bathroom he must disconnect a wire or wrap up a chord. Alarms are sounding all night, one for the fluids being empty, one for the finger, one for the blood pressure cuff. He bolts up out of bed at  2 am, grabbing wires and angry. He says "I need to get out of here, I am claustrophobic and need to breathe!!! Having had panic disorder for many years, I knew exactly what to do. I turn on the light so he can see around the room, unplug his monitors, remove the finger monitor as he stands up. Within a few minutes, he feels better, is back in bed and sound asleep.

A couple of hours later, at 4 am I get a nudge. I wake up and he is up again, asking for a change of clothes saying "I forgot to change yesterday". I get his clothes for him as he tells me "you're snoring is keeping me awake"!  I put layers of pillows on the double mattress' so I am sitting up. Hoping this will allow him more sleep. Within ten minutes he is sound asleep. He barely remembers the incident.

Zack is back sound asleep so I decide I might as well get up, take a shower and head down to the cafeteria for breakfast. While down there I bring back something for him, which he still does not eat. His eating is way off this time around. He doesn't eat breakfast or lunch. He only manages to eat some dinner, which contributes to his weakness. His nausea is not as bad as his previous hospital stay, but enough to keep him from eating. This is the first time that I am staying "in house" to eat. I don't want to run off too far, so I take the elevator down to the second floor. Being a little nervous and anxious about going to a new place, I take my time. The halls are long, but filled with beautiful photos taken by the staff. They are personal, as if the staff are sharing their families with us. There are children in Halloween costumes, a family portrait of four generations, pets covered in mud from playing in the fields, a man holding a large mouth bass he just caught. I can't help but smile at the simple pleasures depicted. What a great idea, this makes the hospital more personal. No cheap prints or tree lined walkways in an unknown location. 

He has slept most of the day, he wakes up for a few minutes, grabs his cell phone texts a few lines and then back to sleep again. I ask the nurse if this is normal, that last time we were here he was so nauseous that took precedence, now the sleeping. She said it is totally normal, the chemo cocktail will make him tired. 

It is 2:30 pm and the chemo has started for the day. Zack gets up to go to the rest room and as he exits his face is white, his eyes start to close and He grabs onto the bathroom door. I stop him from falling by throwing my body in front of him, grab his arms and throw them over my shoulders. He slowly walks back to the bed. I hit the call button and ask for immediate help. The nurse walks in and I tell her what just happened. She tells me she had just given him decadron and probably put the fluids in too fast ( they take two minutes to do so, but for Zack they need to take a little longer or he has a reaction). She calls the doctor who orders an x-ray to make sure his lungs are okay. (the x-ray came out just fine). His oxygen levels were too low. It turns out that he has been so weak that he hasn't been able to walk around, by not walking around and being in the bed for the four days, he doesn't take deep breathes and that's what causes his levels to go down. They put him on oxygen for a little while, then brought in the insentive spirometer which he has to breathe into to build up his oxygen intake. 

I'm sure once we are home he will bounce back. He is tired of being here, who wouldn't? He is ready to be in his bed, with his television, his friends nearby. Frank comes to see us and pick up some of the items we brought for our stay. I see Zack perk up a bit. They talk about the car, how does it sound? why does it leak oil? what can we do about it? How much are you driving it? He tells Frank, "You better put gas in it, if you're driving it around"! we all laugh! I head down for dinner while Frank stays with him. I would love to have dinner with Frank, but we feel more comfortable if one of us is with Zack in the event he must get up and is dizzy. (which is actually just what happened). Frank heads out, so he can care for the animals. I tease him and tell him he better enjoy his "bachelorhood", he only has one more night. About a half hour after he leaves, Amy and Bill stop by after an all day bike ride around the mountains. Amy shares several pictures of their ride and they tell us of their adventures of the day. We live vicariously through others right now, sounds funny but true. They said there was no way they were going to be in Asheville and not stop by. How cool is that! With their visit came more laughter and help passing the time. 

Zack continues feeling sick to his stomach, so I call Will (our night nurse) in and ask for Benedryl to help him sleep tonight. He brings in his shot (which Zack likes to self administer) and gives him the Benedryl,.  Zack motions for me to come and sit next to him, he holds my hand and I snuggle with him for a little while until he is asleep. He may be a giant, but he will always be my little boy.The one the nurses call "an absolute sweetheart." 


Entrance to the Pediatric section of the Hospital



Friday, September 14, 2012

Smile for the camera!

After a fairly restful night, Zack and I awake to cheerful Amy. A talkative, energetic nurse that brings a smile to our faces every time she walks in the room. (even with the chemo cocktail). She loves what she does and loves caring for Zack. Amy is considerate, she makes sure the "beeper" on the IV machine is turned down low so as not to irritate us with the noise. She comes in before it sounds to change the back, organized and consistent is the name of the game with Amy.


Our day was fairly routine. I played Facebook games, caught up on my emails, arranged meetings with Zack's teachers and organized his school deadlines. It is all a bit overwhelming and after a melt down on the phone with the Vice Principal, I'm hoping the meetings with his teachers will help. They can show me how to use Moodle and Chrome book so that I can better understand what Zack needs to get done. He has English Honors, Three elective courses and His Senior project to graduate. All should be completed by December and he will then be able to walk the stage with the rest of his friends, and I will be one less nervous breakdown. Everyone is in agreement Home Bound is not the best option for Zack, but it's the only one at this point.

I run out for about 45 minutes to see if I can locate a student scheduler, but nothing out there is better than what I have already found online. I grab us lunch and return to Zack, who is surprised I was back to fast. I just didn't want to run around while he was stuck in a hospital bed. It was nice to get out for a few minutes, but just as nice to be back with my "little" buddy. Every time I try and take a picture of him, he covers his face or has a serious expression, but I have fun trying! Actually we both have fun trying, I stand there with my phone and giggle until he forms a smile, and what a devilish smile it is. Boy do I love this kid! Going through everything he is, he still manages to have that smile and laugh and be caring. When he was created, they certainly broke the mold.

Tonight I order Chinese to be delivered to the Hospital. Zack has not eaten since yesterday and even the sandwich I brought at lunch didn't seem to excite him, so I try and get him something he might enjoy. I had decided I didn't want to leave him as he still isn't feeling great, not to mention.the parking makes it almost impossible to find a spot until after visiting hours 9 pm. The nurses at the front desk are all plotting to hide our meals when they arrive. I must say for the work they do, the majority of the staff are cheerful and helpful.

We talk with Frank at the end of the day. He was out grabbing himself dinner and was driving Zack's car. While we have been in the hospital, we had new tires and a new exhaust system put on it. Zack is so excited he is ready to go home now just to hear her purr. He is so excited about automobiles that he even has ME looking at them and taking pictures that I then forward to him. I'm even checking out the rims on cars.


It was nice to have the day to hang out with Zack and just relax. Tomorrow will be devoted to "hovering" over Zack to get more school work completed. They have been making the treatments one hour earlier each day so that we can get out Sunday morning instead of Sunday late afternoon. Hopefully we will be home by one or two, in time to catch up on laundry, unpack and have a "normal" evening at home before beginning work the next day.



Thursday, September 13, 2012

Changes in latitudes, changes in the attitudes!

"Its these changes in latitudes, changes in attitudes
Nothing remains quite the same
With all of our running and all of our cunning
If we couldnt laugh we would all go insane"  Jimmy Buffett


With three days down and two more to go, Zack's course of treatment is going well. He doesn't get much sleep, but who does when in the hospital? With nurses coming and going, taking pressure, changing IV bags, typing their notes into the computer, open door, close door. Two hours later, it starts all over again. The good news is his new medication is helping to keep his nauseousness away. I had failed to mention in my earlier blog about the nodule under Zack's arm. by Tuesday morning it was half the size, (Doc said the size of a pea now ) so they decided that a CT was not needed. It turns out this is not uncommon, it can happen from antiperspirant, so we have changed him to all natural deodorant. At least something we can "control".

Tuesday was my day and night to stay with Zack. Wednesday morning 7 am, the door opens and a young student nurse walks in. She is shy and quiet. She introduces herself and says she is there to do labs. I am lying on the  "makeshift" double mattress bed situated on the floor in a corner of the room. She looks down at her chart, looks around the room, looks down at me and says "so where is the baby, I'm supposed to see a 5 month old" . I look at her, point to the bed where Zack is laying head nearly touching the headboard and feet touching the extender they had to add. Zack is still half asleep, but manages a wave. She looks at Zack and says "oh".. walks over to the computer, starts to type, looks at her chart again and embarrassed exits the room. A few minutes later she pops her head in the door and says "I had the wrong room".  We burst out laughing!

I head out to work knowing that I won't see Zack again until Thursday night. As I am driving part of me is glad to be away from the hospital, the constant reminder of what he is going through, another part of me wants to start crying because I am leaving my child at a hospital, alone, with only nurses who think he is a 5 month old! I know in my heart he is fine, the daytime is such a routine now with school work and naps. It goes slow for him so by 5 pm he has an attitude about how much it sucks being in the hospital.

Work has been tough the last couple of days, my emotions are on my sleeve (duh) and all you have to do is say BOO and I loose it. Sometimes I cry, other times I get angry, either way.. not with good outcomes. The Big John drama from the previous days stays with me and is all brought to the surface again with a comment during an unexpected phone call.  At a time when everyone should be pulling together, anger, fear, jealousy and frustration take over. I have been down that road before and I don't want any part of it now. I want to spend the rest of the days at the hospital focusing on Zack's care and getting much needed rest.  I am finally at peace with my decision, so I call Frank and Linda and offer my prayers for Big John, but not my time or energy, they both  (of course) are understanding and supportive.

Zack, Nick, Peter and Daniel ( Forrest had not yet arrived )
I arrive at the hospital around 7 pm on Thursday. Zack is surrounded by Nick, Peter (cousins), Forrest (himself a former child cancer survivor and his brother Daniel, both part of our extended family. They are playing Risk Lord of the Rings, a board game with tiny little black, yellow, red and green men. I have not a clue what it's about, but they are having a great time.  Zack tells me that he had so many visitors last night and today. Shawn and Floyd, "Granny" Linda and Billy, Amy, Bill and Drake. Frank of course spent last night with him. Amy wrote to me saying there were so many people and nurses in the room at one time, it was standing room only. My heart was full of joy! How awesome to have so many people rally around him. Not only at the Hospital, but there is not a patient that comes into the office that doesn't hug me, bring me a flower and ask how Zack is doing.  It is 11 pm and the boys are still playing their game. I hate to do it, but will need to "kick" them out soon. The energy in the room is so amazing, he can once again be a kid, having a good time with friends.


Tuesday, September 11, 2012

Drama, drama, drama, drama, drama....

Zack with his 1971 Ford Galaxie
Zack is floating! and not just a little, we are talking tying him to the largest anchor with the heaviest rope so he doesn't fly away ( or actually his car!). Yesterday he picked up his car from Uncle Floyd. Floyd surprised us yet again and made the necessary repairs so Zack could bring his new baby home. He and his friends surrounded the motor, taking out a couple of parts, cleaning them and then re installing them. This morning, he woke early and drove the car to the local tire shop so they could put on new tires and later install a new exhaust system. They will be working on it while in the Hospital.

We arrive at the Cancer Center at 9:30 am. Once all the usual tests are completed, we get the good news that his counts are very good, so we are a go for the hospital stay. This time they have a bed ready for us by Noon and we head over to Mission. On our way there Lawrel calls us (another friend for years, her son Andrew and Zack have been friends since 1st grade). She says that she would love to bring us lunch, we graciously accept and within the hour she comes into the room with hamburgers, fries and drinks. She visits with us for a little over an hour as we catch up on our kids lives. As she heads back to work she gives me a great hug. I forget to stop and take time to REALLY hug. It's like I will fall apart if I let someone get too close. Note to self  "STOP... ENJOY THE HUGS!"

I head out an hour or so later to stock up on drinks and snacks for Zack's stay. As I walk into Walmart I see a hair salon across the building. I walk in (MY hair stylist Teresa has been cutting my hair for 25+ years) and there sits a young woman, half of her head is shaved and a large colorful tattoo covers her scalp, the other side is long black and pink hair. I ask her how she is with cutting short hair, she says "good", I ask "HOW good!" She says "VERY GOOD!" I reply with "GOOD ANSWER!". I ask her name "Taylor", great name! I sit in her chair and ask her to save what mess I have made of my hair. It turns out the back was an inch longer than the front (I never cut the back so.. that would explain it") Just $7.00 later, I have a great haircut and feel like one more thing is off my list. I simply have not had the time to make it to Teresa.

So I know we are not the Housewives of NY, NJ, Atlanta, Miami.. etc.... I know we are not the American Gypsies.....So WHY do I feel like I am in the middle of a "reality show", More like Survivor....Well let's just say in the middle of trying to get us packed for the next five day stay at the Hospital, having Zack's blood work, port set up, checking his weight, height and temperature, etc... the drama found us. I won't bore anyone with the details, as they have bored me and (God help them) anyone else around us today. The end result is perfect! My father in law, Big John has been relocated from Hospice care to a new nursing home in Asheville (just ten minutes from the Hospital). He likes the facility, he has his own room, can smoke to his hearts (or not) content, and the grounds are equally beautiful to those he just left. I am not being crude, though we all know I have that ability, I simply have been down this road before and have no desire to do so again.


As a favor to Linda, (whom has devoted most of her life to this man and whom we can NEVER repay for her years of care)  I went to make sure that he was settled into the new facility. It made sense, it was only a few minutes drive from my current location. Little did I know the emotions I would feel once I entered the building. The entire time, I couldn't wait to get back to Zack, whom I left visiting with his Cousin Nick, who came to visit with us after working at ICU in the VA Hospital all day. It was time for me to tell Big John about Zack. I enter his room, he is surprised and happy to see me. He looks pretty good (never a surprise for this man, he has a will like no other to live!) I sit down on his bed, he is in his power chair trying to fit his oxygen tank onto the back of the chair. He asks if I am alone, I tell him yes. I tell him that I need to share something with him, he looks at me and says "I can hear, my aides are working really well". "Good, well first let me tell you that Zack is okay," he looks panicked for a moment. I continue "Zack is okay, but he had a tumor on his leg, they were able to remove it, but he must have chemo and radiation for the next year". He tears up a bit and says "do you know how many people I have lost to cancer?" I say "yes, but Zack won't be one of them". "The reason I wanted to tell you this, is,  Zack can not come and see you, he can not play football, he can not return to school his Senior year." He starts to name everyone he has lost, and asks the usual questions, how long, is it really all gone, how is he? I answer them all and tell him we didn't tell him before, because we didn't want to make him weaker by the news. He said that he would not mention it when HE came to visit ZACK... That would be a first, for him to come to us! I'm not sure if that will ever happen, but it was nice to hear from him. I asked him if he knew what a blog was, he said something about computers. I tell him I have written a blog from the first day and asked if he would like to read it. I would be glad to print it out. (A suggestion from Shawn). He said he would. He then went into talking about his ailments and how he was feeling. My mission was complete. I unpacked his things and placed them exactly where he wanted them  and was just getting ready to leave when he asked me to find someone that can show him where to smoke. I walk down the lonely hall and meet a woman who tells me everyone is on the second floor. I go up the elevator and it is a whole different world. Men and women are wandering the hallway in their wheelchairs. I am immediately brought back to the days when my own father was in the nursing home his last six months. One woman stops me, tell me she is Mrs. Rose and could I please tell her where she is supposed to be? I assure her I will find out and return, another woman tells me to push her back to her room, so I oblige as she thanks me over and over only to meet with a male nurse asking if I am family. I tell him "no, I walked by and she needed me to push her", he said firmly "well, we don't want her in her room yet, she will go to bed and fall out", she is upset and just keeps saying "no, no, no". I tell her that this nice man is taking care of her and  he is making sure she is safe. I look at him and say "take care of her!".  I continue to walk down the hall to locate someone that can help me with John. Finally the first nurse that directed me to his room sees me and tells me to send him upstairs and she will direct him to the smoking area. I go back down the elevator and am greeted by him as the doors open. I escort him onto the elevator and show him where to go, he exits and heads down the hall when he is stopped by Mrs. Rose, she looks at him and then me and says "are you taking me home with you?" he laughs and as the elevator door starts to close I hear him tell her "No, that's my daughter in law, she is married to my eldest son Frank.........."  I exit the building and can't wait to get back to Zack, promising myself that I do not need to return. I plug in the Hospital into my GPS ( hey I'm still getting lost here) and half way down the road, realize it is NOT going to take me 7 hours to get back to Zack and I was heading in the wrong direction. The GPS was sending me to a hospital in Tennessee. I was only 2 minutes "out of the way", so it directed me in the right way and within 10 minutes I was back with my Zackman.

He was relaxing in the rocker and on his laptop. He asked how it went, I said "mission accomplished", he said " Good, now can you relax and we have fun for the rest of my stay?" "You got it!!!" I remind him that Frank will stay with him tomorrow night, so he can torture his Dad . He says "I LOVE my DAD"!! HE bought me new tires for my car!!! BRAT!!!! We have a good laugh! We just hang out while the rest of his medicine and fluids are dripping into his IV. He is feeling tired from the Benedryl, so I know it won't be long before he is asleep. I am reminded of my friends quote and it seems to be appropriate for this day, "everything is as it should be".... at least for now.