Friday, November 30, 2012

Life = Tortilla Soup

I guess I spoke too soon, well sort of, seeing that I still can't talk today. I go into Zack's room to wake him, he is getting ready very slowly today, he is also in a bad mood. Not feeling well, I "snap" and whisper that I can't keep being everyone's smiley face. I'm not feeling well, can't communicate at all today and need his help. I offer for him to drive himself for radiation treatment so he doesn't have to hang out with Mom and I, but he turns me down. It isn't until  just before we are ready to leave that I see tears in his eyes. I ask him what is going on, he tells me that he is hurting on his leg and his knee went out of it's socket again. I feel like the worst mother in the world. Here he is in pain and I'm on my pity pot. He shares that his left leg, the opposite of where the tumor was removed and where he is getting the radiation, has blisters on it and is burning. He also tells me his girlfriend broke up with him. He tells me he is tired of hurting. We somehow only talk about the "girlfriend' for a couple of minutes. He is young and I remind him that a REAL girlfriend is one that he can see and talk to, not long distance (he likes to play it safe and keeps long distance relationships, works for us too!). We quickly move on to his leg. He tells me that it just started to hurt last night and then he notice some blisters. He has been putting aloe on it, but this time it's not getting better. He also shares that his knee has gone out four times in the past few days. This is what happened in the hospital a couple of stays ago, when he collapsed in the bathroom and was in so much pain. 

I told him to talk with the Doctor today about the burning and see what we needed to do in addition to the aloe. ( I was to be with Mom for her CT scan and he prefers to talk to the Doctor on his own) I told him that I would talk with the doctors on Tuesday and see if we need to see a specialist about his knee or what they recommend.  We know his weight doesn't help at all, but also need to make sure nothing is going on in addition to that. We drive to Hendersonville and pick up Mom. It's so good to see her again, even if it's for tests. We try and make all the time we have, at least a little fun. I had already emailed Mom ahead of time letting her know it was going to be a short day. Tests, radiation, lunch and home. She was good with that plan as she has been pricing tons of jewelry for her booth and is tired as well.

We have to laugh as she can't hear and I can't talk. Zack has to be the translator today. Poor kid, he wasn't in that type of mood, but handled everything like a pro. Though still in a lot of pain, he dropped us off and insisted on continuing on to his appointment alone. five minutes away. I called radiology and advised them of his knee and the blisters on his leg to ensure they treat it properly. The nurse says "this is Zack's mom right?" knowing that she can barely hear me, I think that is what she is referring to, "oh he tells us everything."  Oh okay, why am I surprised? He has handled this entire situation like an adult. 

Mom and I go in for her CT scan. A sweet young nurse puts in an IV so they can do the contrast. We are advised to wait in the waiting room for 30 minutes until her labs are done to make sure it's okay to proceed with the contrast dye and scan.  While waiting Zack and I text back and forth. He is vague, but says they gave him two two containers of burn cream. He was advised to put it on as needed for the pain. This is what they had warned us about. It took him awhile to have this reaction, but it seems to be quite painful, especially on the back of the leg.  They call Mom in for her scan and before I can complete one Words with Friends game she is done. Zack is taking longer than usual because they are treating the leg, so we just sit, I pull out my phone and in my "notepad" application am writing to her. We laugh as I write that I am glad she can read!!! 

She is worried about me continuing to go and help unload Big John's stuff from the nursing home. I tell her this is the last little thing that I WANT to do for Linda. It won't take long and I promise I will be home and rest for the weekend. She knows I am stubborn and not very good at taking advise, so she reluctantly concedes. I had texted Floyd and told him that Zack would not be there because of his leg. His Doctors told him to take it easy and not run around, he needed to let it heal. Linda is adamant about me not coming up to help, but I know she is still going to be a work when we get there.

Once Zack picks us up we all agree on Cracker Barrel for brunch. Mom and I love it there as they have a cute little store attached to the restaurant and we always manage to find a little something unusual (though today neither of us were really in that type of mood) . After a nice breakfast, we grab some dog food for Mom and Bobs babies and head back to bring Mom home. I make a quick stop at our hairdressers place of business to pay her for Mom's (early) Christmas present a hair cut at home tomorrow. We drop Mom off, but not before picking up a box full of beautiful jewelry for her booth in Brevard and two huge boxes full of brand new toys from Mom and Bob (their annual tradition) to take to Marines Toys for Tots. Zack is sound asleep in the back seat, so we put the boxes around, in front and in back of him. He is nice an cozy.

As soon as we arrive home, Zack goes and lays on the couch. He is walking very slowly and I tell him to stay home and take it easy. I head out to John and Linda house, no one is there yet, so I plug in my phone and watch a movie on Netflix. Before I knew it, I was sound asleep. I'm not even sure how long it was before Floyd and Big John arrived. I was anxious as I was still so angry at him and yet how can I be when all he wants is to be at home.  I am becoming an expert on mixed emotions these past few months. I have learned that whatever I feel, it is right for the moment. I am not eager to run to him and welcome him with open arms. Billy (Linda's son) comes up to help and between the three of us, we have the truck unloaded within minutes. I run inside to us the restroom and am followed by John in his electric scooter chair. As I get ready to leave, I walk up to give him a good by hug and he thanks me for coming to help. I don't answer. He puts his fingers up in a cross pattern and says "I hope your not contagious." I look at him and say "No, but thank you for being so concerned about my health." As I walk down the path, I can't help but chuckle. He is who he is and will never change. It really isn't worth me getting upset over. I stop by the truck to give Billy and Floyd a goodbye hug and am on my way. It felt good to fulfill my promises for the day.

I had received a text earlier in the day from Jessica (my partner in crime at work). She checks in with us quite often and for some reason felt something was wrong today. I told her it was a rough day, but won't be a long one. She offered to fix us dinner and I have learned to say "Yes, thank you very much" when someone offers something.  After a quick trip to Lowes (yes I went there AGAIN) for window plastic to winterize our house, I stopped by and visited with Jess and her family for a little while. It was so nice, even though my voice was squeaky the entire time, to just sit and catch up and watch the kids (three adorable 6 yrs, 3yrs and  9 months .. I think I have ages right) running and crawling around so happy. I was handed a box with a pot full of tortilla soup, tortillas, shredded cheese, sour cream and a pumpkin cake for dessert. I said my goodbye and headed home. It was 5:30 pm, a full but successful day. 

Zack was laying on the couch when I arrived home, Frank was walking Sidi. I immediately heat up the soup and devoured two big bowls full. Oh my gosh!! I have never had this before and I have found my new favorite! It's kind of like our lives right now, there is a little bit of everything in a big pot and yet somehow it all works well together. Frank and Zack took their time getting their dinner, I guess they weren't as hungry at first as I, but they too loved it. Zack even had two bowls and has not been eating quite as much as lately. We were all sitting around so comfortable that I talked them (I didn't really have to twist their arms too much) into watching Men in Black 3. It had us all laughing and chilling! I was in heaven. Zack's knee was being iced, he put the cream on his leg, Frank was nurturing to him and explaining how to help it heal faster with continued use of aloe, the cat decided I was the perfect pillow and the dog laid on the floor with his "baby", a stuffed animal he suckles until he is asleep. 

Once the movie was over, it was my Que to go lay in the bed and write the blog for the day.  I received a couple of texts from my sister in law, Tammy. I texted her back telling her to call me, forgetting that I hardly had a voice. She just needed to talk a little about everything that has been going on with Big John, her kids and life in general. She kept talking about what we are going through, how she can't understand how we are handling everything and why I'm still trying to do it all. This is a common question / statement I receive quite often. I simply explained that once all of this is over, I don't want to be lost and try and figure out who I am. Though, who we are changes daily.

Thursday, November 29, 2012

"No trash in my truck Mom"

I took a day off (Wednesday) from blogging because, well simply put, it was as normal a day as we have had in a long time. Zack decided to drive himself for radiation. He said he hasn't been as tired lately and kind of likes driving himself. He had to take my car because his truck needed a new power steering hose. He was there and back within three hours. He had already arranged to have his friend meet him so he could drop off the truck, get me my car and pick his truck up when finished. 

He was so excited when he got his truck back, he went straight home and pulled out the shop vac to really clean out the interior. I guess some of what I do has rubbed off on him. He took one of our small organizer baskets and arranged the supplies he uses neatly in the basket. Mom was teasing that he will stop and wipe down the vehicle when he goes through a puddle. Zack just grinned and said "I have to agree."  I was never quite sure which way he was going to go, neat or sloppy. With my car he would do the best he could at keeping it clean. With his.. everything has it's place and when we were together going to Asheville, he showed me where to put the trash. "No trash in my truck Mom". Kind of fun to witness.

He has been doing his school work more steadily. I'm sure that it is finally hitting him that he only has a few weeks left in this semester. I told him failing a class was not an option, it would show up on his records for Tech school and later the Auto Diesel School in Nashville (his ultimate goal).

I came home from work and find myself feeling pretty bad. I know this feeling. I get it every year when the "leaf season" is nearly done. I know EXACTLY what I have done wrong,. I didn't wear my mask when blowing the leaves at my sister in laws house. Add to that the emotional crap of Tuesday and you have someone (oddly enough.... or not!) with her voice becoming weaker. I crawled in bed, Frank fixed an amazing dinner and as I gulped it down, I realized I was right where I wanted to be, home and in bed resting.
Zack had been spending time up at Drakes, doing his homework while Drake worked on his own truck. He came home by 9 pm and was in good spirits. Frank is slowly coming back to his old self. Work has slowed down, he missed a total of 10 days of work and that is hitting us pretty hard, but I know he and the business will bounce back. It always does.

It is now Thursday and my throat no longer hurts like last night, but my voice is pretty much going. Zack is again going to his radiation therapy on his own. This time he gets to take his truck, so he is even more excited about the drive. He must also go and have his lab work done to see if he needs a blood transfusion tomorrow. I arrive at work and of course my boss teases me about my voice (who doesn't like teasing a person when they sound like a mouse squeaking). He is concerned because I had the flu shot (something I have always been adamant about NOT having, but was told that we HAD TO for Zack's sake.) My boss is worried that I now will have the flu or something as a result of the stupid shot. I try and assure him that this is NOT anything more than what I get every year from the leaves. It actually becomes a joke, we run around and say it's the "leaves"... 

By mid afternoon my voice is so far gone that people on the phone think I'm crying. THEN I have even more fun with it and tell them (only the ones that know us well) that it's the doc being mean to me and made me cry. Of course they all get a good laugh in. It was actually pretty funny the things some of the patients came up with, from "your husband must be in heaven", "Hey Doc are you enjoying the quiet in the office?" to "I don't think I have EVER seen you not talk, that must be torture for you!!". Ah yes, I feel the love. It made the day go by and with the laughter, as they say "it's the best medicine."

Zack calls me at lunch and tells me that he does not have to go back for anything at the cancer center until next Tuesday, when we go into the hospital. He does continue with radiation tomorrow and Monday, but the other can wait. It has been two weeks since he has had chemo and I'm glad his body has had a chance to rest a little. The radiation is enough for the moment. I make arrangements via email with Mom for tomorrow. I would have LOVED to talk with her, but that would have been pretty sad. She can't hear and I can't talk. I remember when Dad , (who had Alzheimer's for 13 years) was alive, we would get such a good laugh about she and him. (Remember you must learn to laugh at bad situations). Dad would say something to her, she would lean in and say "What?, I can't hear you", Dad would then say "I can't remember". 

Mom has a CT scan to make sure her only kidney is okay. She had cancer in her other kidney over a year ago and had it removed. This is a standard followup.  I then call Floyd to arrange a time to meet him at John and Linda's house tomorrow to help unload all John's stuff from the nursing home. Linda and I also talked and tried to come up with solutions. To everything she says "he won't do it."  Linda has tried everything, but when it comes to John, he does what he feels like doing and doesn't care about anyone else.  He never really has, it seems and that's so sad.  I talked with an old neighbor of theirs today and they told me they can remember how mean he was to his kids. He would  treat them like crap and then be nice to everyone else. They had a real hard time forgetting what they witnessed and to this day, unfortunately again, they don't have anything really nice to say about him. I can remember better times of course and I'm sure like his kids, try and hang on to those memories. Getting old sucks and I try and remember that sometimes our "bad" attributes get worse when we get older. To end ones life with little or no friends, family that loves you, but really doesn't want to be around because of how you treat them. Sad indeed. 

Once I return home from work, I again decide to crawl in bed. Frank has fixed me a nice hot bowl of chicken noodle soup and I just motion instead of talk. He tries to get into two in depth discussions about what I don't even remember anymore. I look at him and in a whisper say "don't argue when I can't defend my views, why would you do this now?" All of a sudden he looks at me and smiles.... the brat!! He KNOWS I can't talk. For shame!!!! Zack is up at Drakes again, doing his school work and just hanging out with his friend. He again returns before 9 pm and is limping. His knee has been going out of the socket lately and he said it happened twice again today. I'm going to talk to the doctors to make sure it isn't related to anything he is going through. 

Tomorrow is another day. Hopefully my voice is a little better. I'm going to rest it as much as possible, until I really need it. Oh, wait.... never mind!!!!

Tuesday, November 27, 2012

Mom, I bought the bumble bee!!!

So it's Monday and Zack and Frank are ready to go to Asheville for his radiation therapy. Frank, Zack and I spent most of Sunday afternoon on the internet trying to find another vehicle for Zack. This time, since the last guy never bothered to return even my call, we were determined to go with a dealer. Three strikes, your out!!! with regards to private sellers. 

I find this nice, bright yellow 1999 Dodge Dakota extended cab truck, call the dealer and they are just about to close. The owner of the lot assures me that he is going to be closed until Monday morning so the chances of us getting the truck is very good.  After the radiation treatment the guys go to the dealership and a few hours later emerge with "the bumble bee".  While they are purchasing the truck (so blessed, the insurance check from the burned classic car covered the expenses of the new truck) I got a call at work from the cancer center. They told me Zack needed to come by for lab work. Zack told Frank to go ahead to work and he will go for his tests alone and return home. He was so excited about the truck, he was full of energy. I'm not sure who was more excited, Zack or me. I get my car back and he finally gets something that he will be able to drive. He stopped by the office to show us his new truck and Doc Steve threw a bunch of change from his pocket onto the front seat floor. He explains that this is a tradition back "home" where her grew up in NY. Zack was beaming as he was showing off his new truck. 

It is now Tuesday and Zack is driving ME to Asheville in the bumble bee. He is to have radiation and double blood transfusion today. Zack is not having any adverse reactions to the radiation so we are very pleased with that news.  He only has one more week and  the radiation therapy is DONE!!! We did just find out today that he was supposed to have back to back hospital stays (news to us). Since his counts were down last week, and this week we go in next week. I'm not sure anymore what the heck that means for Christmas, but I'm thinking we are home. Like I said before, we WILL be home, they will just have to wait for us!! Zack wasn't thrilled when he got the news today, but after yet another "cheer up" session, I just kept saying "three more hospital stays after this one, let's knock them out!" 

While he is getting his blood transufsion, I had set up a meeting with Big Johns (father in law) Doctors, case worker and social worker. Unfortunately the other children could not make it, though I wasn't sure that "strength in numbers" would have made any more of an impact. Linda (mother in law) and I met with and pretty much wasted out time discussing why they should not allow John to go home. I guess, the patient has all the rights and the caregiver has none. So, after a condescending statement from a primped up 21 year old Hospice case worker telling me "you really need to understand where HE is coming from." HE REALLY wants to be home and promises to be good and follow directions. I said "OH so you can guarantee that he will take his medicine, not catch his bed on fire for a third time when he smokes in bed, not smoke with the oxygen tank on, not threaten his wife or family members that try to take care of him, he will not keep them awake all hours of the night just to turn on the TV or the computer, or just because out of pure spite he will scream until someone comes running so he can throw a book at them." I tell her NOT to talk to us in a condescending way, We are well aware of what it is being a caregiver, we don't need HER telling US how to feel or how HE feels, we have been caring for him for years!!! I told them that he is in such great shape because of the 24 hour care he receives in their center and by sending him home, where he will no longer follow their recommendations they are sending him home to die and quite possibly taking some other people with him. He has already threatened to burn the house down with Linda and Billy in it!  Bottom line? He comes home Friday, the bed and oxygen tank will be brought over Thursday, have a nice day and by the way "thank you so much for meeting with us." I remind the young woman that WE were the ones that called the meeting NOT them, and NO they are NOT welcome!!! 

As Linda and I exit, we go to see John. He is smug and asks how "our meeting went". I look at him and tell him that Frank and I are involved now and if he so much as lays a hand on Linda or does anything that could threaten their lives I will personally call Adult protect services and have them open a file and come out and observe his behavior. He tells me to get the hell out of his face and not talk to him that way. He tells me he doesn't need me or anyone else in his life, he is going home and that's all he cares about. The sad part about all of this is, I love this man, he has been in my life for 30 years. We all love him and wouldn't waste five seconds of our time if we didn't. Through the good and the bad, I feel for him and hate that this is how his life will end. Such anger, hurt and disharmony. I don't like this side of me that came out today, I am both embarrassed and angry that I allowed myself to get so upset. This is a no win situation, where we all loose.

I was never so pleased as when I got out and went back to Zack. Having called or texted the "kids" with the results, I opted not to talk to anyone about it anymore. I have expelled what little energy I had left today and though I promise to be there for Linda, I have handed the rest over to John's kids. They are four in number and more than capable of handling it from here.  My energy can be better served with my son, husband and mother. Zack was still upset about going to the hospital next week, but has been resting off and on. We have another hour before the transfusion is complete. Zack asks how the meeting went, I fill him in. He tells me it was a good thing he wasn't there. He is still young , but understands fully what is going on and has his own opinions. He can be headstrong like his parents. 

While finishing up, we receive a text from Melanie who had been by earlier to give Zack a hug. She is there with her daughter for blood work. It was so neat to share our relationship with the staff. Zack introduced Mel as his "other" mother, I introduced her as "his nice mother, I'm the tough one." We all got a good laugh at that. Once we were done, Zack and I grabbed lunch and make a couple of stops, naturally for items for his truck. The truck started to make a weird noise, Zack pulls over and determines that all the power steering fluid is gone. Luckily we were right next to Target, so we run in and get what is needed. We arrive safely at home. Frank and Zack look at the truck and see that the hose has a hole in it. After an understandable "fit", Zack calms down and runs to the parts store. The part will be in tomorrow, he will take my car for his radiation tomorrow and when he returns will take his truck in to get repaired. 

Exhausted, but with renewed strength to start a new day I settle in for the night. Zack visits with Drake as they clean out his truck, armor all it, wash the windows, and install a box for his supplies. He is back to his good mood and has learned yet another lesson. (If you own a vehicle.... Shit happens).

Sunday, November 25, 2012

Bah Humbug!!!

The day started out relaxing. I was the first to wake around 7:30, followed by Frank and much later Zack. Unfortunately we must wake him at 10 am for his shot. I walk in his room and he says "I know!!".  None of us have any plans for the day. I have a list of things I "must" do, but don't really have the desire to do anything at all. I just sit on the couch, fix a couple of frozen waffles for breakfast and start to catch up on more recorded shows. Our Directv box has been acting up, freezing during programs both recorded and live, so I know we are going to have to replace it, which means we won't have the shows we have recorded. 

Zack had brought in the Christmas boxes and they are strewn all over the living room. Usually this would drive me nuts, but today, I'm not even in the mood to decorate. The guys are quieter than usual. It isn't until later in the evening that I learn that Frank isn't feeling well again. Zack is in a bad mood because he has to do a lot of school work and we told him to get it done (again!!). Frank joins me on the couch to watch the shows and is very quiet. 

I am playing more games online, playing on Face Book when I get an email from Mom. Rhonda has been working non stop every day for the past two weeks. She is tired today and tells mom she will come tomorrow after work to take her grocery shopping.  I see that and immediately email that I am on my way to have lunch and take her shopping. Mom emails me back and tells me NO NO NO!!! Stay home and rest!! We have a "battle" via email and of course I win!! I let Rhonda know, not to worry about a thing, rest, I got it covered. I was so glad to get out of the house, since I had been sitting so much, my neck had started to hurt and I knew a little of exercise would do me some good. I asked Frank to load the leaf blower in my car so I could go and surprise my young sister in law by taking care of the leaves in her yard. Some think I'm  crazy to do that , but I love doing that type of work, you see instant results!  

I pick up Mom and we grab lunch. It's so nice to see her again. I worry about her. She takes everything that Zack (and we) are going through too much to heart. She is being overly empathetic and needs to release some (a lot) of the worrying she is doing. It is draining her energy and making her have to work twice as hard to think in a positive way. She is hurting a lot lately too. I'm not sure what is going on, I keep asking if she did something to hurt her back, but she says no I'm just tired. I know there is more going on than she is telling me, or maybe even she doesn't know. 

After lunch we head to the Aldi, one of our favorite places to shop for groceries. They originated in Germany, but I can remember going shopping with my Meme in Belgium at the Aldi right around the corner from her apartment when I was younger. Mom meets a couple there who are sharing their history and Mom is telling them about Belgian chocolates, cookies, etc... She seems to hear them well, so I leave her to visit as I finish grabbing a couple of items. Once we finish paying for the groceries I see Mom leaning on the counter. I encourage her to sit as I finish bagging all the food. (that is one way they save, no bagboys). We leave and head to another store to grab Bobby's drinks and wrapping paper. I quickly run into the pet store for dog food for Sidi. Mom tells me she had a wonderful day, but wants to me go as soon as I drop her off. She knows I still want to do Jamies yard and it will be dark soon. 

I drop off Mom and her groceries, give Bob and her a big hug and head over to do the leaves. She was right, within an hour it was getting dark and by the time I finished there was just enough light for me to see how to put the blower back in my car. It felt good to get out and do some things. I wish I could give my mind a rest, but the emotional stuff will be there for a while.

Once I am home, Frank tells me Zack is at his friends house for another camp fire. He did manage to get a lot of his school work done so he asked to go up for a couple of hours. The tree had not been decorated yet, so I started to pout a little.  I didn't want to do it alone, they didn't want to do it, maybe we just don't decorate this year! Frank got up and started to decorate apologizing that he had not even paid it any attention. It wasn't until much later that I realized (after much questioning) that he wasn't feeling well.  I started to hand him the ornaments and within an hour the tree was finished and beautiful! Zack returned home, had a great time and commented on how pretty the tree was. It was good to be back home and though the energy in the house is down, I know it will be back up as soon as Frank feels better.

I go into the room with some presents I have purchased for Christmas and go ahead an wrap them. I bought this pretty blue and white paper, all the presents are going to be that color this year. I finish wrapping everything and put them under the tree. Again, I feel a sense of accomplishment. Every day I must stay on top of things as much as possible. We never know what each day will bring and it is more tiring to "catch up", than to stay on top of things. Tomorrow Frank and Zack will go to radiation and then look at the trucks. Tonight Zack is talking about the yellow Dodge (my favorite), so we shall see. Let's hope it is an easy day for us all!

Saturday, November 24, 2012

"Mom, You talk too much!!!"

It is "black Friday". I'm not really sure what that means anymore. I see in several advertisements that it now starts at midnight in most stores. I guess it's like gambling, everyone wants to be the first ones there so they can get the best deal. I went a couple of years ago (three hours after the doors opened) just to see what the fuss was all about. If you want to feel like a herd of cattle standing in line for the food, then it's for you. NOT for me. 

Frank, Zack and I decide to go together today  for his radiation therapy. We must be there at 8:15 am and then followed by blood work. We hope that the guy calls us while we are there to see the truck. We are all in good spirits, ready to handle whatever happens today. I (again trying to be the cheerleader) tell both Frank and Zack that we must just go with the flow of whatever is to be today. No expectations, no anger, just deal and make the best of it. We are all in agreement.

We arrive to a skeleton crew at the radiation department. Always very nice and cheerful, they greet  Zack and bring him right in the back for treatment. Frank has stayed in the car, there is no reason for a "crowd" to be there (as Zack puts it, he doesn't like a lot of attention when doing this). I tend to calm Zack down faster when he is upset, so it's a good plan just in case he needs a transfusion. He finishes with his treatment and we are to go up to adult oncology and hematology on the third floor.  

Zack and I step out of the elevator onto a large waiting area the length of the building. The chairs are all laid out in rectangular patterns, each facing another. There is a large television at the end of the area, with a shelf in the middle of the room acting as a divider.  The reception area is at left of the elevator, but somehow it is confusing as to where we are to go. Staff is running around when one young lady in scrubs hears me say Zacks' name and says excitedly "oh, I have your chart, follow me." Immediately, the young man at the reception desk says, rather abruptly "NO, I HAVE HIS CHART!". Zack and I look at each other and then at the young woman, she, looking embarrassed, says "Oh, I guess I DON'T have the chart".  She asks us to have a seat and will be with us in a moment. Zack and I sit across from each other and looking around, I mumble to him "weird energy!", he chuckles and says "ya think?" I comment that the receptionist forgot to shower, his hair long and very greasy, clothes all wrinkled and the attitude on top of that, I almost got up and took Zack out of there. What a difference between the children and adults. Yet everyone is going through the same thing. Why should anyone be treated any differently. Do (as Zack reminded me he will be next year ) 18 year old and older be different? I felt better when I saw one of "our" people with another patient Zack's age. She gave me a hug, looked at Zack and commented on how much better he looks. The nurse takes his blood without having issues finding his vein (very unusual) and within thirty minutes we get the good news. NO TRANSFUSION!!!! We were so happy, we had found out when you go into the hospital for a transfusion they keep you there eight hours (in the clinic it takes about three).

We head out and meet Frank at his truck. Still having not heard from the guy selling the truck, we go ahead and grab some breakfast. An hour later, still no word.During breakfast and on the ride to Asheville, I called two of the case workers about Big John (Franks Dad). I tell Amanda (Hospice social worker) that I will be in Asheville on Tuesday and insist on meeting with the two doctors that are releasing him. I tell her, if they are going to release him, then they must assume responsibility for his care and should anything happen to him, Linda and Billy in the event he smokes and blows up the house with them in it. I also tell her that I will go to the news and let them know what is going on. (a few months ago a woman was smoking while on oxygen and blew up her apartment and nearly killed the people around her.) I told Amanda, when John was in HER facility (Elizabeth House, a Hospice Care Facility ) we were visiting him, he started to light a cigarette with his oxygen on and still in his nose. I had grabbed the lighter and Frank grabbed the tank.  We then brought everything to his nurse. Amanda agrees to get the Doctors together. She "reminds" me that John is the one insisting on going home, and I "remind" her that this man also doesn't remember everything all of the time due to hardening of the arteries. I also talk with the case worker in the nursing home and tell her we are going to try and get him to agree to stay for another week. She says she will do whatever she can to help us out. She says "this is the hardest case I have ever seen, he is a selfish man and doesn't care about the safety of anyone around him." she offers her apologies that she can't do any more for us. Legally everyone, including our hands are tied. 

Zack comes up with the idea of the three of us going to see him. He says "Mom, maybe he will listen to me" I ask him if he REALLY wants to see him, he tells me he is ready to see him and thinks that he has a shot at Papaw "hearing" him. He also thinks if we stall, the truck guy will call. We arrive at the nursing home, John is not in his room, we know exactly where to find him. Sure enough we go up to the second floor patio and there he is smoking. At least he didn't have his oxygen on him. They had set up his room so that he can't leave with a tank. He is thrilled to see Zack (this is the first time since he lost his hair). Immediately the guilt sets in. How can we love someone and be so angry at the same time? My emotions are all over the place. I feel like I'm be deceitful, but also know (without being overly dramatic) that it may possibly save lives. Many have questioned why I'm involved. Why not let Frank or the other kids do all of this. The answer? I know what I'm doing. I've been here before and time is of the essence. If we had time, I would let everyone else handle this and when Linda came and asked for my help, I would do anything for that woman. She and her son are the reason he is still alive, they took care of him for all these years and I for one will not let her down. Anyone that knows me as a friend, knows I would do the same for them. We have a nice visit when John brings up going home. I tell him we may need to push it back a week as the bed and everything is not set up yet. He then looks me straight in the eyes and says I am going HOME and nothing or no one is going to stop me. Zack tells him that he is looking so good and he would really like him to stay in the home. He say's I cold come see you when I get my treatments and you would still be around, because they take good care of you here. He tells us again, no one does anything for him, he does it all for himself and will continue to do so. the discussion became heated and I won't go into those details, it's not pretty, it's down right sad to witness. A son trying to get his fathers respect, love and understanding. It never has happened before, why would it happen now. Zack witnessed this and has a new understanding of his father, though he doesn't quite grasp it all  yet.  We leave a couple of hours later. Give John a big hug and kiss and are on our way to a more peaceful day. I am exhausted, not physically but emotionally. I call Linda and fill her in on the day. I tell her I have one last move and if that doesn't work, he will be coming home. She is to meet with me and the Doctors on Tuesday . If he does come home, she and Billy may need to look into staying somewhere else, perhaps if "they" see he is alone, he could get the 24 hour care he needs. 

We head home without a call, text or email from the truck guy. Zack is resigned to the fact this may never happen. Once home, I lay on the couch and take a nap. Zack and Drake are in his room playing video games and just relaxing, while Frank is outside reading his book.  Once I wake up I remember I need to make a bank deposit, so I run out and while our stop at the local department store to see if I can find some special gifts. Excited, I returned home with Gifts for my niece and nephew and a few odds and ends for stocking stuffers. With Christmas coming close and us not sure of our daily schedules, it's best to get done what we can, when he have a chance. When dinner is over, I find myself with a sore throat. Zack gave himself his shot (still a routine twice a day) and was heading to watch TV. Frank was watching one of his blood and guts movies so I crawled in bed and within minutes was sound asleep. 

It is now Saturday morning and I'm only awake ten minutes and managed to piss off the "guys". Frank, who woke me up with the TV too loud who could have simply said "I'm sorry I didn't realize" and Zack because I asked for the number of the truck guy. He didn't want me to get involved, but after two weeks of this, his emotions every time a change in meeting and me wanting him to get a truck so I can have my car back I am ready to step in.  Within an hour we all are talking to each other and apologizing. My sore throat is much better. I realized it was probably because I was talking soooo much yesterday my voice was tired. (those who know me are laughing hysterically right now).  Frank and I start to look for a truck on the internet. This time we decide to go to dealers instead of individuals. We have a better chance of finding a good truck as well as recourse if something goes wrong. Three hours later I find a bright yellow Dodge in Asheville, across the street from that is another truck he wants to look at as well. I call the dealership and they are closing in an hour. Frank assures me he will take Zack on Monday morning for radiation and then go and look at the trucks. We have a plan in motion! We are all excited and can now move on with the rest of our day. 

Zack (after asking 1000 times... teenager remember!) brings in the Christmas boxes. Frank goes up to the water feature and decorates the area. He also puts up the new LED lights we bought for the trim of the house. I am still pretty tired from yesterday. I was planning on going to Jamie's to help her with her leaves (also to check out her new house she is renting) and then go to see Mom.  I decide I need the day to be "lazy" and rest. So off and on, I watch TV, play games on my laptop and nap. I start to set up the tree and then chill again. It's so nice to have a couple of days to rest after all the emotional crap. I so look forward to Tuesday, one way or another a decision will be made with regards to John and I will know that we have done everything in our power to help. 

It is night time and Zack gets a call from Chris ,they are having a campfire at his house so he heads up there.. and no Chris. He returns home, sits in his room and says "he wasn't there!" I partially laughing and yet my stomach in knots, I tell Zack he needs to work on his communication skills. He tells me not to worry about it so much. I sit down and tell him how I'm always "trying" to ensure he is okay, happy and safe. I wish I could relax and KNOW that everything is going to be fine, but especially more so now, trying to find the balance is one of the hardest things I've ever had to do. When his moods are so extreme it's hard to figure out what our next move should be. At least we can handle it as it happens and we must never try and figure out what lies ahead. One thing all of this has proven, we are not in control and must adapt with what life throws our way. 

Thursday, November 22, 2012

"Mom, they lied"...

For a couple of days it has been "business" as usual. Zack and Drake went for his radiation on Wednesday, once they returned Zack came by and was so upset, "Mom, they lied!", "They said I wouldn't have to be back until Monday and NOW they tell me I have to go back Friday morning." "Not only do I have to go back, I have to go to the third floor where I don't know anyone, and THEN if I need a blood transfusion, we have to go to the hospital, where I meet ANOTHER doctor that I don't know!"

Another piece to this puzzle is, we were scheduled to meet with a young man on Friday to look at his truck that he is selling. The time has already had to be rescheduled a couple of times due to his work schedule or ours. We had it all set up for tomorrow at 10, right in the middle of the time he was to get his transfusion. We managed to work it out, well so we thought. 

I am at work and finish lunch early. I return to to the office and decided to go ahead and decorate for the Holidays. I call Zack who comes within 10 minutes with Drake. Together the three of us get everything put up including the outside lights and Christmas angel flag.  I have done this for six years now, so it is very easy to put together and with Zack being so tall, he just has to take the staple gun and hang up the decorations that go on the ceiling. By the time we open and hour and a half later the office is fully decorated, much to the Docs surprise. Going to the Biltmore House and seeing all the decorations really got me motivated!

It is the end of Wednesday and Zack is up at his friends house. He has just finished one of his major items for school so he is feeling better about his accomplishment. I am finished at work and head out to the grocery store to get everything for Thanksgiving dinner. Yup, I decided if they didn't have what I needed for the "traditional meal", we could eat spaghetti.  I was in luck though, they had everything I needed for a full Ham meal fit for an army. I still haven't figured out how to fix just enough, but the nice part, leftovers!!!

It is Thanksgiving! Zack spent the night at Drake's and has been invited to their grandparents house for lunch. I want him to have as much fun as possible, the distractions help him through the rough times. He stops by in the morning to give himself the Lovenox shot, gives me a big hug and is back out the door. I take my time getting the house in order, cooking and doing dishes in between watching a couple of pre recorded shows. Frank, who is still very weak and recovering from the flu, managed to clean up the leaves both off of the roof and ground. Once he was finished he had to stop and rest. I don't mind saying I am worried about him. He has always been very healthy, so not something I'm used to seeing.

 Everyone starts to arrive around 6 pm. Since it was decided at the last minute to do something, pretty much everyone had plans somewhere else, I just wanted to fix a dinner and anyone that could make it was welcome. Rhonda (sister), Mom, Jamey (sister in law) and her two kids (my niece and nephew came to join Frank, Zack and myself. As I said previously, there was enough food for and army, but we managed to out a dent in it all. Half way through the meal, Zack goes into his bedroom. He had told me earlier that he was tired, had a bad headache and knows they are going to give him blood. He knows his body well enough by now, he can tell . The kids go and hang out with him, playing video games and watching TV  A short while later, Frank goes to sit on the couch, he too has a headache and is tired. Within minutes he is sound asleep. Mom has been very quiet tonight. She looks at me with such sadness, she has had a hard day. I'm sure most of it is being tired. She was with us all day Tuesday from early in the morning for Zack's and then her Doctors appointment to late at night after the Biltmore party. She then went out yesterday with Louis and Celia for a wonderful lunch and then again tonight here. She was teasing that she has done more in three days than she has in a month. Rhonda worked today and will again work tomorrow morning to a sold out day, so they head out by 8:30 pm. Jamey helps me clean up and put up the leftovers. With big hugs from all three, they are out to the door by 9:30.  

Frank wakes up just in time to learn everyone has left. I explain that everyone understood and gave their love and a hug, Feeling really good about the day, I get ready to head to bed when I hear Zack yell out for me. I run into his bedroom and he has blood running  down his leg, a sock covered as well as the floor. He says "get me a washcloth NOW, please!!!" I run, grab a cloth, holler to frank and who is very good at this kind of "clean up". It turns out that his feet have been peeling a lot, evidently one section peeled and well, you can guess the rest. Frank took care and got the bleeding to stop (another issue because he is on blood thinners twice a day) wrapped up his foot and told him to wear different shoes for a couple of days. I head back into the room to check up on him and he is all of a sudden FURIOUS!!  He starts to hit his pillows and is screaming ENOUGH!! I'VE HAD ENOUGH!! I'M DONE!!!! Franks runs in to see what is going on and Zack says he just got a text from the guy that is selling his truck and he was called into work and can't meet with us. One thing we have learned about Zack's health, when his counts are low and he requires a blood transfusion, he gets the headaches, is tired and just plain feels rotten. THIS is when his temper comes out, even if it's just for a short moment, we must let him express his anger and he recovers very quickly. He then recovers physically when he is done with the transfusion. Frank tries to stop Zack as he goes outside, but I stop him and tell him to let Zack get the anger out, Frank is worried about his foot and I run outside to make sure he doesn't hurt himself. He grabs his golf club and beats it into the ground until it snaps in two. He then sits on the ramp, I sit behind him as he slowly starts to slow his breathing and get calmer. It is then that we come up with another alternative. I tell him that nothing has really changed. He couldn't drive the truck until Monday anyway when he would have to get the tag and he can still text the guy and ask if we can meet later tomorrow afternoon. He comes in, texts the man and received a response that we will be called when he gets off work tomorrow. I leave Zack alone so that he can process everything.  He comes to see me around thirty minutes later and is calm and ready for bed. He kisses me goodnight, says goodnight to Frank and heads off to bed. 

As I lay here thinking about the past few days, I give thanks to everyone that is a part of our Journey and am grateful that we made it through another day. 

Wednesday, November 21, 2012

A little fun goes a long way.............

With a full day scheduled, Zack and I headed out early this morning. Our first stop was to pick up Meme (my Mother) in Hendersonville (about 18 miles from our home). We go straight for radiation for Zack's leg. He has a little over a week of that particular procedure left. Though he is handling it like a pro, I know the drive back and forth every weekday is getting pretty old for him. We all take turns, friends, family and Frank and I going with him, as he is very tired when he is finished with the treatment and it's not really safe for him to drive himself. 

Once finished with Zack's treatment, our next stop is Moms urologist. It is time for her checkup after her kidney cancer and we just want to make sure that everything is continuing on the right path. So far, so good according to the doctor. He ordered a standard CT scan for a week from Friday, to check on the remaining kidney so I know Mom is going to feel better once this test is done. Zack having been diagnosed in June reminded her how lucky she was that her cancer is gone, but also brings out the fears. "Could mine return?" Her Doctor though, feels really good about everything and I feel that she left the office more secure than when we entered.

The three of us agree it was time for an early lunch. Since Mom needs prescription glasses ( even with cataract surgery years ago, her eyes are getting worse and she has been having a hard time seeing at a distance) after eating, we go into Lens Crafters to pick out a pair of glasses. We have about an hour to wait so we go into a couple of shops. Zack turns white all of a sudden and sits down on the bench. He tells me that he really wants to go and just sit in the car. He is very tired and doesn't want us to have to leave without the glasses and he can be more comfortable in the car, listening to his music and napping. Since we only have about another 45 minutes I feel okay with him staying there. Mom and I do some more shopping, until it is time to get her glasses. We go back into LC and the lady checking us out talks about her own Stage 3 breast cancer scare and how she too is a survivor. She "noticed" that Zack had "the look" and empathized, but told Mom that he will be just fine, just she knows it. (of course we do too!). She even got up to give Mom a hug before we left the store.

Zack was sitting in the car, listening to his Country music and just "chilling". He felt better after having taken a nap, but seeing him I decided to bring him back home. Mom and I were invited by Rhonda, (Zack didn't want to attend) to the annual Employee Christmas dinner at the Biltmore House in Asheville. Mom wanted to go with me for the ride and some time together, so we drove him back and since we had some time before we had to meet Rhonda, we went for a Belgian break (dessert and coffee/water) and see Mom's booth on Main Street. Off and on throughout the day I was talking with Big John's social worker at the nursing home, the hospice social worker, DSS and even a magistrate. At this point the only thing we can do to keep John and Linda safe is to have him declared incompetent, but not having a return phone call from our attorney, I'm not sure if that is even going  to be possible. The one thing that did give me reassurance, is all of the people I talked with agreed, he has no business going back home, but everyone's hands are tied legally and there is nothing they can do to help. 

We arrived back in Asheville at 5:45 pm in time to pick Rhonda up at work (she works in group sales at the estate) and head into the castle / estate. How beautiful everything was, there were trees decorated in white lights lining the entrance to the road leading to the estate. Once on the property a giant tree in the center of the garden also totally in white lights, with its reflection in the water feature, was surrounded by smaller light covered trees and the entire driveway was lined with candle lite, white luminaries. You could go back in time and feel you were in a horse drawn carriage arriving for a grand gala. Stations were located all over the property with cheese squares, fresh fruit, carrots and celery sticks, crackers, star and ginger bread cookies. In other areas were big urns filled with coffee and hot chocolate with marshmallows. It wasn't the food, it was the ambiance, the comradeship  and the families that brought the party to life. each year children under the age of 12 are given a present (chosen from a list they presented earlier) as a thank you to the employees. The one thing we heard from everyone is how nice the Vanderbilts and now the Cecil s are to their staff. Sharing this house, (we were able to tour the two main floors), was also a special gift. Each room was more beautiful than the other, you could spend hours sitting there looking at the details in the architecture, the painstaking details that have gone into preserving what was once the grandeur of the house and now is again.  
Do I sound like I work there? It is just a very special place to me ,having grown up and been privileged enough to see some of the grand castles of Europe (Palace de Versailles) it makes me proud that we have our own so close to home. 

Once we completed the tour, we were back at our cars saying goodbye to a wonderful evening. My nephew Jimmy is in town and going to bring Mom back home with Rhonda. Zack and Frank are at home relaxing (Zack was supposed to go to his friends fire pit, but decided not to ). The tour for me, was just the right boost I needed to get in the Holiday spirit. Now if I can just fit an 18 foot tree in the middle of my house......

Mom and Rhonda 
Friendly lion at the entrance!

Monday, November 19, 2012

Simply Amazing!

Simply Amazing!! He's just so amazing! "We never know what he is going to do next." That's what the nurse at the Cancer Center said to me on the phone today. Zack's counts were up to 11.1. That is the highest it's been in a long time. They can't believe it, of course nothing surprises me when it concerns Zack. He has shown us over and over how much of a fighter he is, how well he can handle any situation put in his path to date. Melanie took Zack for his radiation and then labs. She was so excited about the counts that she immediately texted me to let me know he was in great shape. We are all so excited because it is so unusual to have such high counts after a week of chemo and radiation.  His body is healing fast and will continue to do so through the course of treatments, that's been consistent so far.

We are so lucky to have friends and family that can take Zack for his treatments when we are unable to do so. He seems to touch so many people and I am constantly reminded by everyone how proud and amazed they are at how he is handling everything. We are all given certain circumstances in life and how we handle them is what makes us who we are. Every day I know more and more that Zack will be just fine because of the way he handles what is thrown in his path. From the diagnosis of cancer, to not being able to drive his first truck, to the car catching fire and on and on... He deals with it and moves on.

He returned home fairly early and started in on his schoolwork. Zack was asking me tonight how he could earn some money. They are going to look at another truck this Friday and he knows he is going to have to put a little money into it for some of the "frills" he wants. I won't jinx it by giving out too much information, but  when he asked if I could find some work for him (he isn't able to get a job like his friends, because of his schedule and current limitation due to treatments)  I told him I would pay him to do his schoolwork. Hey, why not? He has to do it, can't do much else, so why not relieve some of my stress and help him earn money.

I received a lot of help from case workers during lunch today. Tomorrow I have phone consults set up to discuss our options regarding my father in law. When one door closes another opens and we were fortunate enough today to have three doors open with people that are more than willing to help us out. Having gone through all of this with my own father, I remember all too well the hoops one must jump through, but if you have people behind you willing to take the time to help it makes the journey easier. Our goal is to keep him in the nursing home where he currently resides. He would really love to be home, but that is just not an option. He requires 24 hour care and none of us are in a position to handle him.

Well, I better sign off for now. Rest is needed for tomorrow. A full but fun day hanging out with my "little buddy" Zack, and Mom. So excited too, this week we get to see a long "not so lost" friend who is up for the Holidays. I can't wait to see her and her family!!  Yeah!!!

Sunday, November 18, 2012

What will this week bring............

We are finally home, having spent the night in our own beds was heaven. Zack had a good night's sleep, me not so much. I have so much going on in my head, I go to sleep with a headache and wake up with one. I feel the pressure of those who need me and don't think I can say no. They have done so much to help us and in the areas where they need help, I have become an expert. (Social services, Nursing home problems and dealing with doctors who want to discharge my father in law when he absolutely has no business going home.) It isn't even Monday yet and I'm looking forward to Thursday. NOT a good way to start the week! I have to work on my attitude!

It wasn't until this morning that I realized how beautiful the house looked. Walking into the living room I did notice a gas heater in front of the gas log fireplace. We had been talking for the past two years about getting one as it is a lot more efficient at heating the house, especially when the power goes out in the winter. Frank was able to get a great deal on one and wanted to surprise me when I returned home. Frank, even still very weak from being so sick, had the house spotless, dinner ready (we had already eaten at the hospital - poor guy), clean sheets on the beds. All I had to do was crawl into bed, we didn't even unload the car until this morning. 

I managed to find the energy to wash three loads of laundry and spent the rest of the day napping and playing games on my laptop. Zack worked on his schoolwork and had a friend come visit him for awhile. Frank was planning on blowing the leaves, but never had the energy to do so. I didn't make it to the office to decorate, I figure this weekend will be perfect as I will have four days off and will be able to get Zack's help with hanging the lights. I love to tease him, he can hang most of the lights on the outside of the building without using a ladder. I did manage to finally get all of the statement in order, in their respective folders and now feel I have some organization. Now when the statements come in (four to five daily) I have a place to keep them straight. Everyone has been very nice to work with regarding payments and discounts after insurance. I even had an old credit card debt cut in half for early pay off.  More blessing all around. 

We made arrangements with Melanie (Zack's other mom) to take Zack for his radiation tomorrow and for his Neulasta shot. We are so lucky to have backup for the days when we aren't able to do so. Everyone has been so eager and pleased when we ask for help. The day should be short, especially since they let us leave the hospital early, I'm sure he won't need a transfusion since he just had a triple. I told Mel that he needs to come home immediately after to do his schoolwork. He only has four weeks left of school and has a lot to catch up on. 

Tuesday we pick up Mom, head to radiation therapy and then take Mom to her Urologist for her kidney checkup. (She had kidney cancer and we were so blessed, they took out the kidney and the cancer was gone, no chemo or radiation needed.) I also have a 4 pm meeting with Linda (Mother in law) and my brother in laws and sister in laws to meet with the nurses, case worker and doctor. The staff want to send my father in law home. He still needs 24 hour care and they "think" he will be just fine. Idiots!!! The fun part of Tuesday is going to the Biltmore House employee dinner with Mom and Rhonda. It is held on the property where we will get to see the decorated trees, other Christmas decorations and be treated to a wonderful time. I seem to have to force myself to go out for fun and glad that Frank told me I needed to go. He reminded me that a little fun can go a long way, so I'm taking him up on his suggestion. 

I just tonight decided to fix a Thanksgiving meal for us, Mom, Rhonda, Jamey and the kids. I am having a hard time getting into the "spirit" of the Holidays and know that Zack is really excited about Christmas this year.I figure this will help get us all in the spirit.  He knows that he doesn't have to be in the Hospital (well, let me rephrase this... WE WILL NOT ALLOW him to be in Hospital during Christmas). Even the nurses said that they will not force the treatment during the Holidays, they know that it is the hardest time to be "stuck" and they can postpone is for one week. (they already have before, because of his counts)

Knowing that I have asked Zack to change his attitude when going into the hospital, I am going to practice what I preach and try very hard to work on mine this week. I know getting much needed sleep  will be a big help, not to mention being back home with us all under one roof,  healthy and no chemotherapy this week. 

Saturday, November 17, 2012

Counting the hours...................

Yesterday (Friday) was a usual day in the hospital, NOT.... Zack was scheduled to be picked up by ambulance to for his daily radiation therapy at 8:30 am, since I'm not allowed to ride with them , I decided to run to Walmart and get my hair cut, pick up a few items for lunch, more aromatherapy stuff (Zack loves the Rosemary Mint smell in the room, it helps relax him as well as help with the nausea) and office supplies to help organize the multitude of medicals statements coming in. We waited and waited and waited, finally at 9 am we were told they were on their way so I went ahead and left. It turns out they didn't come for another hour and a half. I walked into Walmart's salon and was greeted by Ryan, whom had cut my hair last month. I ask him to cut it a lot shorter and please go ahead and shampoo. I never realized how just a little pampering can make you feel so good. I was totally relaxed and felt like I could conquer the rest of the day. 

I return around 11:30 expecting Zack to be in the room waiting for me, he is still not back! He finally returns around noon, which is the time he is supposed to start his next chemotherapy treatment. One of the paramedics looks familiar and she says "I used to work with your Mom at the Sheriff's department", of course she meant my mother in law (Whom was also Mom). She then tells me how Betty would be so sad to learn of her grandson's treatment. We caught up for a few minutes until Bryan comes in and asks them where Zack's chart is, well they left it "somewhere" and an hour later it miraculously "showed up" at the nurses station. This delayed EVERYTHING! To explain, "they" can move the chemo treatments up only by an hour each day, so that we are able to leave 8 hours after it has begun. Because of this one "simple" error, his chemo was delayed by two hours, which in turn delays the time we can be discharged. Everyone makes mistakes, but when you have a teenager, who has already been in the hospital for five days, it's kind of hard to ask him to let it go.

Zack and I have lunch together, I then settle in with all the medical statements and start making phone calls to set up payment arrangements. I also am requesting a break in the balance based on income. Here we are six months into this and I find out from my phone calls that The Hospital hasn't filed any insurance, (because they don't have any on file?), she casually mentions on the phone, "oh, yes you have a balance of $179,000". I pick myself off the floor and ask if that is AFTER insurance (knowing full well that insurance will cover 80% of the expenses up to $5,000, then it kicks in with 100%. ) She says that they didn't have me down as having insurance, so I again gave all the information  and she tells me once they get the balance, they will be glad to take the application for assistance. At least I now have one person that I can call with her direct line. I continue with my other calls and everyone was very successful, some (again) didn't have the insurance information (even though my card was handed to them and scanned right in front of me). Once I was completed with this I was so tired, I decided I would handle the organizational part later.

I ordered Chinese for the two of us ( they deliver directly to our door!) and get more comfortable. Around that time there is a knock on the door and it is our friends Bill and Amy. (Drake,  Bills son, and his Mom came to see Zack the night before).  It was so good to see them. Amy just had major surgery a little over a week ago and was looking very good, but tired. I was so surprised to see them. They are a constant on these hospital stays as is Drake. Visitors are few and very far between these days. I don't even want to attempt to hazard a guess as to what has changed, I have enough on my mind then to try and figure out others reasoning. Zack says "whatever", so I take my cues from him. Within 30 minutes from the time they leave, dinner is delivered. We settle in for the night watching more comedies. ( A great stress reliever for sure) By 10 PM I am asleep and Zack isn't far behind.

It is 1 am and Zack gets up to use the bathroom. He sits up and without realizing it until it's too late, the IV tube connected to his port and the IV tree is caught in the wheel. He jerks back down and looks at me with fear and anger, "Mom, it hurts" I immediately call for the night nurse (Will) and tell them his port is out. Will comes in right away and sees that indeed, the port came out and will need to be re accessed. (they will have to stick a new needle and tubing into his chest port).  We are still half asleep and trying to figure out how this happened. Will assures us this is not uncommon, with so many wires, tubes and machines around I call him Pinocchio  He is not amused! Will turns off the machines , he has another patient that he must fix an IV on and will be back right away. I don't even know how long it was (not long at all) and Will was back with the IV port kit. He pulls out the old needle and I'm all of a sudden reminded of a scene from the Adams Family movie, where the kids are doing a play at school.... (if you didn't see it, you wouldn't understand). As soon as the needle is taken out (sorry for graphics) blood come out everywhere, I remind Will he is on Lovenox which is blood thinner. He grabs towels, I grab towels, Zack is just sitting there trying to "catch" what he can looking at me like "what the F?" The bleeding stops almost as fast as it starts, the port is again accessed and fluids being pumped back into him . It doesn't take long for Zack to be back asleep, so I too closed my eyes and slowly fell asleep.

I wake this morning, Zack is still sound asleep so I quietly take a shower and head downstairs to the cafeteria, leaving him a note on the board. On the way down I meet a man in the elevator, I comment to him "I look worse than you feel!" he chuckles, I then get serious and ask if he has a child in Peds. He says "yes, a little girl 15 months old with double pneumonia."  I let him know that they are in my prayers and he thanks me. I am still so out of it, that I have him let me off on the wrong floor and didn't realize it until I was all the way at the entrance. I ask for directions (yes men, a very good thing to do. smile) and am right in front of the cafeteria. Once I finished, I headed back upstairs and Zack was still sleeping. The nurse had come and gone, changed his fluids and wrote her name on the board. (Sam). I set up the laptop and started writing the blog. Once he woke up (about an hour later), he ate just a bit of his breakfast when the doctor came in, checked all his vitals and told us he would sign the discharge papers for 8 pm. Yahoo!!! Zack is literally counting the hours.

At lunch we had a couple of furry visitors. There is a group of people who bring their service dogs to the hospital to visit the patients. Since Zack had just started his chemo he wasn't really in the mood to see them, so I went out in the hall and visited with them.  The dogs were large in size and had the softest coats. I sat on the floor and both came to me and nudged me with their noses. One lay on her back for me to rub her belly, it felt so good to see a little furry friend. I haven't seen Sidi or Anubus since Wednesday morning when I stopped at the house to pick up extra stuff we had forgotten.

It is now 3 pm and Zack is halfway through with his final chemo treatment for the week. He has been tired today, so he has been sleeping quite a bit. Every now and then he moves from one side of the couch to the other so he can lay his head on my shoulder. He is excited about going home (now scheduled for 9 pm). He knows that he won't be able to go anywhere because he has a lot of schoolwork to catch up on. (he still didn't feel well enough to do much in the hospital and I for one am not going to force him while in here). Tomorrow I head into the office to put up Christmas decorations, Monday he Frank and his friend Chris will go for radiation therapy, lab work and then go and look at a nice truck he found. I'm not sure what he is going to think about once he gets his truck (one track mind... teenager...).

For now I will sign off and get some more rest. This will prove to be a busy, but I hope filled with fun, week. On a funny note, check out our in room "refrigerator", the port leading to the roof discovered by Zack. It really did keep things cool. 

Thursday, November 15, 2012

Among my blessings, I count YOU!!!

Another week down, I know that sounds weird coming from someone who doesn't like to count the days. This week was a little rough for me emotionally. Since Frank has been sick for over two weeks, we haven't been able to connect, running through the house with masks on, avoiding contact or any length of time in the same room. Add to that Zack being in the hospital and me being the only one that can stay with him. Usually I will stay the first night and then the last two or three. Even having one night at home after work is enough of a break from the rat race. But with Zack's mood being pretty good, he smiles when I walk in the room (of course it could be the food I'm bringing with me). 

I share with him the news that several of the kids at his High School took it upon themselves to do a fund raiser. They were selling T-shirts, towels, ribbons all for Zack's benefit. I received a call from the Vice Principal, Lisa, and was asked to stop by and pick up the check. When I did so I was amazed at the hard work they must have done to collect what they did. The support that we continue to feel from the community is amazing and all without our prior knowledge. We are so blessed!

Zack has been in an especially good mood considering everything he has been through this week. He continues with radiation (being picked up by ambulance each day to go across the street), chemotherapy every day after that, and today a triple blood transfusion. His counts have been low for two days, so they decided it was time to give him the transfusions. Because of the radiation and chemotherapy, his counts tend to go down faster these days.

He is more nauseous than in previous visits, but the new aromatherapy (they brought him a little container with peppermint scent) and "burner" in which I place rosemary mint liquid both help with everything that makes him feel sick. Zack is also more tired, that is to be expected as well from both treatments. One thing, he points out, that is really bothering him, are his eyebrows and eyelashes. I have had several people tell me "oh, he shouldn't worry about THAT , they will grow back."  To Zack, THAT is one thing that most everyone would comment on, how beautifully long his eyelashes were (all the women wanted them) and his eyebrows framed his face beautifully. This is the stage where we expected this to happen, but just like with his hair, at first it is a shock.

His face is quite pale. I tease and say he is glowing in the dark so we don't need a night light. Hey, at least I get a sarcastic smile. Tonight, as we did last night, we ate dinner and caught up with the days routine. He doesn't share much, what's there to say Mom, everything is the same. Radiation, Chemo, bad hospital food (he won't eat much breakfast and doesn't eat his lunch at all). He loves the nurses and staff though. He tells me how they are looking out for him and always making sure he is okay. The Doctor, he said comes in three to four times during the day to check up on him. Another issue this time has been his blood pressure dropping very low. This is another side effect, they fill him with fluids through his IV to make sure that he is hydrated enough and the pressure comes back up. Let me say one thing I've learned, Water.... it SO important. When your doctor, friend, anyone tells you to drink water. DRINK DRINK DRINK.... I see the physical changes in him when he is hydrated. I know we would all feel a lot better if we drank more water (well, those of us who don't drink enough... Ahem..... guilty as charged!) I know Nancy, you have been telling me this for YEARS!!! You are FINALLY vindicated. (Smile).

Once dinner is finished, we sit back and challenge each other (on our phones of course) to several games of Words with friends. It's fun to sit in the same room and try and beat the other person. We listen to "Family Guy" and "Big Bang Theory", two of Zacks favorite shows. At one point he motions for me to come and sit next to him. This is when my "little" boy is back and needs his Mama. He leans his head on my shoulder and we just sit there silent. After awhile I pat his bald head and apologize that he has to go through this. He looks at me and says "it sucks and points to his eyebrows." I am holding back the tears and am thinking about the other families that are going through their own stuff. Down the hall., there is a screaming baby right next door to us, they can't explain to him what he is going through. The family who's child has Leukemia and still has another two years of treatment. If you look around, there are people that have it better and people that have it worse than "you". We all have our shit to go through, this just happens to be ours. 

I am grateful for the bonding our family and friends have done over the past six months. You accept the precious gift of new friendships, while learning to forgive and let go those that can't be there for you.  The things that we have learned and witnessed are so precious, patience, understanding, perseverance, different faiths pulling together for one purpose without judging, trust and most of all letting go of what you can't control. 

Tuesday, November 13, 2012

Follow the yellow brick road..

We have our "Hospital Day" routine by now. Zack and I wake up, get ready and pack the car. We aren't sure if we are going to be admitted or not, as his counts were low last week. They usually don't hold out hope for them to be good with continued radiation. As we head into radiation treatment we make a deal. If his numbers are good, we go in and get it over with. Four more hospital stays after this week. The chemo of course will continue as out patient, but it's the Hospital stays that he really hates. If the numbers are not good enough, then we accept that as well. 

He is finished with radiation, as always, within 15 minutes. We head upstairs for lab work and though our appointment again is not until 11 am, we decide to just hang out until they can fit us in. I find a corner bench near the large windows. The sun is shining in, it is so warm. I woke up again at 4 am and knowing we will have a long day ahead of us, forced myself back to sleep until 6:30 am. While sitting there I fall asleep, occasionally waking myself up with my snoring, or Zack's calling my name. After about an hour (still earlier than our scheduled appointment) they call us back. Within an hour we are told his numbers are good enough to go into the Hospital. They are all surprised as his color is off and because it was so low last week, but one thing is for sure, this kid heals fast and for that we are so grateful!

We grab our belongings, head to grab lunch on the go and arrive at Mission within 30 minutes. We are getting smarter each time. I unload everything at the main door and have Zack stay with it while I park the car. When I get back it is so much easier than hauling everything from the car, up the ramp, in between cars. I'm not sure why we didn't come up with that idea soon, but oh well, better late than never. We head upstairs to the third floor and go to our room. This time it is a small room, we are barely able to move around, yet there is something about the energy that I like. The window is large and the length of the room, even though the view is of the roof and the other hospital wing across from us. We were given the option to move to another room with a better view, but when I checked it out, the couch and chair would have been in a corner and totally alienate Zack. Here, we are close and should he need anything I am right next to him. Zack discovers a vent and takes off the cap. The air from the room quickly goes to the outside and we realize this is circulating the room air pretty much like a fan. We love the idea of "bad" air leaving, so we leave the cap off. Every now and then Zack sticks his hand out and teases that he has a window. 

Within minutes Melissa walks in with Anna Beth, who is being shown the "ropes"as one of the new nurses.  We can always count on feeling welcome when we arrive. The staff here and at the Cancer Center have a special heart. What I love is several of the nurses follow the blog, so when we arrive they are pretty much up to date with Zack's life. We walk in and they will mention something that has happened and we feel like we are with family, only with masks, needles and bags full of "stuff".  We finally get settled in (after deciding to keep our room) and as I'm plugging in the lamps, putting on the special blanket, pretty much making the room more like home, Melissa comes in and comments on how homey everything looks. I tell her and Anna Beth that my wish (when I get a million.. from wherever.... I don't gamble so I guess I can't win it) is to put in all the rooms, the best recliners that turn into amazing beds for the parents, lamps, a big screen TV with gaming systems, refrigerators, and surround sound. When these kids have to come to the hospital for days, some even stay for months when they live far away and are in need of treatment, it would amazing to have rooms just as special as in hotels. What can I say, it's a mothers dream. Zack comments that if were to "win" a million, he would be selfish and keep it all to himself. (Somehow I'm having a hard time believing that).

Zack is started on his IV fluids and by 6 pm his chemotherapy begins. Melissa tells us that she is here the next two days and her goal is going to have him start chemo one hour earlier each day so that we are out of here early on Sunday. Music to our ears for sure! Zack's mood is pretty good. I'm very proud of him, I know he doesn't want to be here, but as I told him a couple of days ago," if your attitude sucks, then you are going to be miserable. " He is already miserable from the treatment, he doesn't need to add to that from being here. He also has been told that he MUST do his schoolwork and if not done by Saturday night, he will not go anywhere until it is. Time for us to do the tough love, he only has a few weeks left in order to graduate. 

As the night progresses he is having a bad reaction to lunch or something. He is not feeling well and that was before the chemo started. He sits in the chair and starts to fall asleep. I finally get him to get into the bed and rest for the night. he is given Benedryl, gives himself his Lovenox shot and is fast asleep.

Monday, November 12, 2012

"Rumor has it....."

Another night with little sleep. I wake up at 4 am with one major list in my head. Who I need to call, questions I need to ask,contracts that need negotiating,  chores I need to do, office work with deadlines, bills to pay, will we go to hospital or have another week in seclusion at home. For a control freak, these MUST be answered and yet we all know, control is out the window. 

Zack takes me in to work  at 7 am. He is scheduled to pick up Chris L. to go with him for his radiation treatment today. He shared this photo with me and finds it ironic that it reads Grave Danger and yet tells me "I'm in THAT ROOM!!!" 
His mood is a little better today, but it doesn't take long for the roller coaster ride. By lunchtime he comes to the office for an adjustment and naturally (he's a teenager) money for lunch. He is hanging out with his friends today, who are out of school for Veterans Day. He snaps at me again and I try and ignore, but as I do so he looks at me and says "well this day is half over and you know what tomorrow is, Yeah me!"  What he is referring to is, he was told last week that he may not go into the hospital tomorrow due to low counts, but we really won't know until tomorrow. He is worried that it will be like the last time and we go in for six days instead of five. I have mixed emotions. If he does go into the hospital, I will have to stay the entire week (at night) with him as Frank is not in any position to do so. If he doesn't then we will be in Hospital the week of Thanksgiving, which is not a huge deal, but still......

Frank went to Urgent care today and after several tests, everything came back inconclusive. There are several tests results that will be back on Wednesday. They said it is not the flu, not strep, not pneumonia, they think it might be from a bug bite, but until Wednesday they're not even sure if it's viral or bacterial. So  we continue to wear the masks when walking through the living room, stay in our respective bedroom as Frank continues to live on the couch.

As I'm writing the blog and Zack is sitting on the bed sharing the days events, the phone rings. It is a dear family friend. She is calling from Scouts and wants to make sure the rumor she just heard is not true. She knows it really isn't, but the person seemed so adamant that it was, she had to prove them wrong. She was "told" that Zack's cancer was terminal. I immediately told her that though it is a very rare cancer and if not treated is most certainly terminal (eventually), but No nothing has changed since we last spoke and due to his treatments all tests are still showing no sign of cancer.  She tells me to hold on and I hear her speak to a man about the "rumor", she tells him that she has me on the phone and indeed it is a rumor, to please let his kids and others know that it in fact is not true. At this point, maybe it's the anxiety due to tomorrow's uncertainty  Franks being sick, the lack of sleep or the Pope being Catholic, (a joke people) I pretty much feel as though I could throw up. Zack looks at me and says "whatever" Mom... My friend says "next thing you know they will be saying he's pregnant". 

I post a shout out to everyone I know on Face Book, asking for them to spread the word. I know I shouldn't worry about rumors, but I know all to well the damage one like this can do to the people involved. I so appreciate my friends bringing this to my attention and hopefully it will fizzle out,.