Sunday, March 31, 2013

Happy Easter!!!

I am a few days behind in my blogging, so I will begin with Friday, which started out at the Cancer Center. Drake, who is now on Spring break, had spent the night with us and tagged along for the rest of the day. Friday was to be chemotherapy , one of the nurses seemed confused when Zack "reminded" her. With us being off schedule by four days, I guess they are all thrown off. But Zack is still right on target, he KNOWS when and which treatments he is to have next. He had his labs drawn and everything comes back with high counts. They ordered the chemo and within three hours we are out the door. Luckily this chemo doesn't make him too ill, so he will be able to enjoy the rest of his weekend. Actually, this hospital stay will start on Friday of next week, so he will have the week to work with Frank (if he feels up to it) and hang out with his friends. The nice thing about going in at the end of the week? I won't miss any work and it fits in with my platelets donation on Saturday and after I'm done I will be able to go back to the Hospital and rest. Zack is not necessarily excited about going into the Hospital, but he is excited this will be his last time as in patient (we will have to return as outpatients in a couple of months to remove the port access). Drake was still hanging out with us so we all ate a nice dinner and sat down to watch "The Hobbit" on TV. We haven't watched a movie together in awhile, so it was nice to just sit together and enjoy some time together as a family. Sometime in the middle of the movie Drake's girlfriend called and wanted to see him, so we know where he went. But it was nice, just the same. 

Saturday was spent resting. Zack was tired so he slept in and chilled. After fully waking up he ran several errands for us, grabbed lunch and when he returned hit his chores full throttle. He had to clean his room, the front porch and some other odds and ends Frank has listed for him. He has been really good about taking care of his chores and is really excited about working next week, so he can have some spending money. I was "supposed" to do the bookkeeping, but just kept sitting on the couch, only to get up to put another load of laundry in the washer, then one in the dryer, then back to the couch. Frank had gone fishing and left a note, "DO NOT USE HOT WATER!!!" Great!!! TODAY he decides to turn it off!! Well can't blame him. The water heater has been slowly leaking for over a week now and we had to special order one since we live in a double wide. Everything is special order for these homes. He was worried the bottom would drop out and the house would be flooded. It was very interesting to wash an entire dishwasher full in a sink half full of water. Spoiled? you bet I am, but an immediate change in attitude, turned frustration into "camping  mode". I managed to clean the entire kitchen with very little water, something that can't do any harm to remember in the future to help conserve. All of Zack's friends were all busy with one thing or another, so he gets in touch with someone he hasn't seen in awhile and they go to the bowling alley to play pool. Returning around 9 pm, is Zack, "Biscuit" and Drake, they are all smiles and played video games until around 10:30 when Zack drives his friend back home.

I awake way too early! So, I force myself to go back to sleep. When I awake again, Zack is standing in the kitchen all dressed up, with collared shirt tucked in, dress pants and looking dapper!! Hey, I'm used to seeing him in no sleeved t-shirts ready for his port to be accessed for treatments. It's Sunday, Easter and several families are getting together to celebrate. We haven't done Easter lunch since Frank's Mom passed away several year ago. Zack went to church and then to Drake's grandparents house for lunch. Frank, as always went for early morning fishing. I finish up the laundry and since I never did touch it, start in on the bookkeeping (for Franks business). Throughout the day, Frank would walk by and I would be on the couch watching an exciting part of "24", he would ask me a question and I would comment "I'm doing bookkeeping!!! don't interrupt" we would both start laughing, he says "clearly, I can see it on the table.... over there.... way far away from you...." Off and on I would make that statement, when I WASN'T actually working on it. Zack returned around 2 pm. He had a good time and enjoyed getting out for awhile. He and Frank started working on the water heater. They were going to replace the floor underneath, where it became rotten. Unfortunately the gas would not turn off completely to the water heater and it wasn't safe for them to continue. I continued for the balance of the day, finishing up the bookkeeping. Zack stuck around the house the rest of the day and Frank chilled.

I'm excited for the coming week. Tomorrow Zack will go work with Frank and I will be able to get my full three days in and deliver the next 30 posters we ordered on Friday. So far, we have put out 90 posters for the fundraiser, so I'm sure the turnout will be good. Tuesday he and Drake will go to the Cancer Center for labs and I will get to spend the day with Mom and Rhonda. Hopefully we will have the water heater delivered tomorrow and have the luxury once more of a hot shower. With Zack feeling so well, my anxiety level has been lower. It's been a great three days and we're all counting on a great week!!!

Thursday, March 28, 2013

"Mom, I was THERE!!!"

We all know, or maybe not, the effects stress has on the body. I have been on the roller coaster for many months now and have been going with the flow. Survival mode is what "they" call it. What I have forgotten about stress is the effect on the brain. MY brain in particular! I realized last week, when I couldn't even remember Jessica's (my amazing associate at work) name. I almost introduced her as Jennifer and knowing I had it wrong, but unable to remember I stumbled over my own words. I am again blanking out on patients names, transposing my numbers has also been a side effect. It wasn't until we went to my sister in laws last week, that I realized how serious my "problem" has become and honestly, it scared the hell out of me. I was standing in front of a sliding glass door and tried pulling, then pushing, I kept standing there trying to figure out how to open it. I couldn't recognize the handle right in from of me. Zack finally, laughing, stood up and slid it to the right, teasing me the entire time about how you open doors. I, of course, joined them laughing, but inside was terrified. Why couldn't I figure out something so simple, am I following in my father's footsteps and getting Alzheimer's? Hey don't laugh, it hits people my age too! I don't share my fear with anyone until the other day. A patient walked in and during our conversation, I couldn't remember a certain word, it was a simple word but my mind went blank. I then shared that I have been having problems remembering simple things, she looked at me and said "stress!" "stress will get you every time." Of course!! Now I remember, Mom did the same thing, back when she was caring for Dad. She kept forgetting words or would remember them in Flemish (her native language). She was always afraid that she was getting Alzheimer's or had a brain tumor. (again, it seems dramatic, but when you all of a sudden has memory issues, you tend to go "there"). 

My point in all of this is Zack. I will share a conversation I had with Frank or Meme. Whomever I was talking to is irrelevant, what IS relevant is, Zack having to point out SEVERAL TIMES "Mom, I was THERE!" You were telling them and I was sitting next to you on the couch, or on the chair, or eating dinner, or in the car!!! He was laughing so hard! He said "I've been having to say this ALL week!!" What's going on? Again, finding the humor, I look at him and say "your'e just so easy to miss!" It is then that I explain that at times I have so much on my mind, I just make it through the day and hope the next day I will be more "awake." Frank will then make a joke and say "she's never fully awake, she is blond after all!" What's wonderful in all of this, is, our ability to laugh, make fun and move on. I remind Zack that he may have to pinch me when he is part of a conversation, just to remind me that he was there.

He has had a great couple of days. He is feeling well and is ready for his next Chemo treatment tomorrow. Wednesday he joined Drs. Steve and Nancy and I for lunch. Once finished, he and I went out and delivered posters around town. He drove his truck and I went from one place to the next, with him as my chauffeur. We had a great time together, unfortunately he lost my debit card and I was forced to cancel it, but if that's the worst thing that could happen, that's pretty good. We were protected and no harm was done. 

Today, he came by the office for an adjustment, (actually a couple of times, he hurt his back raking) brought and picked up Sidi who had his hair cut, worked at one of Franks customers house's doing Spring clean up and in the afternoon, after getting permission from the School Board, put posters up at the High School. He talked with several art students and his art teacher and asked if they were interested in donating items for the silent auction. They all said they would be glad to donate their art. He spent the afternoon hanging out with Drake. His friends who are still in school are out for Spring break for a week, so he will have more time with them before entering the hospital the end of next week. Drake will be spending the night and go into the Cancer Center with us tomorrow, which will make it more fun for us all. 

Tuesday, March 26, 2013

Say What???

The day started early, 5 am to be exact. Not because we had a 9:30 am appointment at the Cancer Center, but because our cat Anubus decided it was a full moon or something (a few days early). She was jumping all over the house and every time I would get up to let her out, she would attack my feet and then run under the couch and hide. I would go back to bed, only to be awakened by her jumping on my dresser and attempting to knock down my collection of boxes. This went on for another hour before Frank finally got up and picked her up (she is Daddy's girl) to put her outside. Needless to say, I never managed to fall back asleep, so I just laid in bed until Zack came in to tell me it was time to get ready. 

We had our appointment earlier in case he needed blood, platelets or IV fluids. With him being so nauseous this past week I was worried he might need something to help him feel better, so we bumped up his appointment time. As we pull into the parking deck, we see the young lady from our town and her mother. She is there for first time possible blood and platelets and is nervous. I let her know and Zack confirms how much better she will feel afterwards. Her mother and I exchange hugs and she tells me how awesome I am. Sweet, but not sure where she is getting that from, we are both in the same situation!! I am no more awesome than she, and I remind her of that!  

Zack had his labs drawn, THAT'S when we were told that he was not going to get his chemo treatment today, "Say what?" was all Zack could say. Since his chemo was late last week, they must wait to give it to him at the end of this week. Which also means that the Hospital stay will be later in the week, as opposed to Tuesday. He wasn't all that happy, as previously stated, he is VERY anxious to get this over with. They must follow a strict protocol, one which has his best interest at hand, so I just tell him to "deal with it!" I remind him that it's okay to be angry with me, but one day he will understand. He looks at me and says "blah blah blah...", he, I and the nurse all laugh. I also let him know that he was born for me to irritate and I plan on doing the best possible job I can. He tells me I'm doing a great job!! (smile) We are advised that his counts are good and he won't need anything further today. they schedule us for 11 am on Friday for the next chemo (Vincristine). 

As we exit the building I stop by and give a good bye hug to my new little friend and her mother. We are both going to be in the hospital the same time next week, so we promise to look out for each other. Rhonda is meeting Mom for lunch today, so I ask Zack if he is up to meeting with them and surprising Mom. He is totally up to it, so we call Rhonda and arrange a meeting place. Within forty minutes we are sitting at a table with our backs to the door when Mom and Rhonda walk in. Mom has her back to us as she is trying to figure out where they are being seated, she turns around and "SURPRISE!" there we are! It was so nice to have a couple of hours to visit. One of these days soon, I'll have some special one on one time with Mom, where I'm not tired, or running off somewhere, but for now, this will have to do. Zack and I were acting up the whole time, being silly and just enjoying our time out with "the girls." Rhonda and Zack decide to split a dessert and with the cut of a knife the handle goes flying into the air having broken!! The pie was frozen solid and Rhonda, who turns beet red can't stop laughing. This is the stuff that memories are made of! Rhonda had an appointment she was running to, so we drop Mom off at home.

On the way home, we stop at several business' to hang up flyers. I have 12 left and am determined not to have any left by the time we are home. Nancy ordered 30 more as there are still several places we have yet to reach. Zack wants to put out the rest before his next treatment and has a couple of friends that have offered to help. Once we are home, I sit on the couch and before you know it, I'm sound asleep. My early morning has caught up with me! When I awaken, Zack is in his room relaxing, smiling because he is feeling better and we now have a plan for the next two weeks, (at least a plan we hope will stay as is). Frank is out walking the dog, so I clean up the kitchen and order a pizza and yes, hot wings for Zack. 

I return some calls from the day. One of them in particular is from the Red Cross. Back a couple of months ago when I donated blood, I had shown interest in donating platelets. The young lady was trying to get a few words in and I was so excited that they were ready for me (they are very busy, but still need more donors) that I gave HER the date! I set up an appointment for the Saturday when Zack is in the Hospital. I know he will be sleeping quite a bit and if a couple of hours helps out someone that needs platelets I am more than willing. I plan on making it my mission to help get the awareness out there of the need. I was still on the phone with the Red Cross, when a young woman came with the pizza. I said "I'm making an appointment to donate platelets, have you ever done that?, she replies "I've donated blood, I'm O+ and they LOVE ME!!, but I haven't done it in awhile." I look at her and say "well time to donate again, I then explain about Zack and the other children and adults in our town that are in need." She got all excited and said "Thank you for reminding me, I'm going to make an appointment tomorrow!!!" The woman on the phone was laughing and saying "Man, you're good at this!!, we can use people like you!" I told her not to worry, I plan on doing my part in educating the community. We wrap up the schedule and I continue cleaning the kitchen. 

The pizza arrives and after eating dinner, we sit and again continue with our favorite television shows. The day was long, but sweet and more memories were created, which is always awesome! 

Monday, March 25, 2013

Calling all Scouts!!!!!

Zack was going to go with his Uncle Floyd this morning to Sapphire. The purpose was to help a lady move her furniture onto a U-haul and Jamey (sister in law) would get the woman's washer and dryer in exchange. He was actually excited about going, that was until this morning. When I woke him up he was still tired, but determined to get up and get dress for his 9 am meeting place. Around 8:30 I called to make sure he was up and ready to go. He was up, but definitely not ready to go anywhere. He was feeling more nauseous than yesterday and wasn't going to be able to go. He had called his Uncle feeling terrible, he has done so much for Zack, and Zack didn't want to let him down. Thanks to great communication, Zack KNEW that if he didn't feel up to it, that was OKAY!!!

He spent the rest of the day sleeping and resting in his room. His appetite is still way off (he didn't even want cake or ice cream at the party yesterday!). Concerned I called the Cancer Center and they want him to come in early tomorrow, just in case he needs blood or fluids. He is supposed to have his next chemo treatment, but only if he is able physically. We were originally scheduled for 1 pm and now the time is set for 9:30 am. This will allow them time to do labs and have plenty of time to determine what, if anything he needs. Zack wasn't thrilled when I told him, but understands that I ,as a parent, have to do what's right for him. I simply explained that if we are there early and they don't need to do anything, then we are done that much sooner. He liked that idea!

I took my lunch break (which at times can be two hours!), went to one of my favorite restaurants and brought a bunch of flyers with me. That was another thing Zack wanted to do today, but I was up for the task at hand and frankly, knew it would be fun! I started with the restaurant where I had lunch. The server there, who is a sweetheart, asked about Zack and then proceeded to tell me about her Uncle who had Ewings in his heel when he was 24 yrs old. She then proceeded to tell me how his leg was amputated and ten years later his lung collapsed and it was cancer. He died several months later. "Well thank you for sharing" is all I could think!! I hear stories, mostly bad ones. But choose to remember the positives, especially Zack's situation, which I keep repeating to myself. "He has no cancer, it was in the soft tissue, he is healthy and young, prognosis is 80% no more cancer." It has become my mantra when I hear these stories. "Zack is healthy, happy and cancer free." I don't care how many times I have to say it, I must not remember the bad! Once I finish lunch, I start walking up the block and stop in every store, most will take the poster and gladly hang it up. Some ask questions, others simply say "we will be glad to." Some know me or know Zack from being in their store and talk kindly about how nice he is. It only takes me a little over an hour to go to every store, agency and restaurant on both sides of Main Street. The more I get posted, they higher my bounce. I am excited! I am grateful! Our little town, where we moved back when I was 14 (from Spain, culture shock) is still small enough that people know and care about each other. I return to the office with only 13 posters left in time to open our doors for the afternoon shift.

I call and see how Zack is feeling. He is starting to feel a little bit better, but is not up to going to Scouts tonight. His plan was to go and ask for his former Scout mates to come and help set up and break down at the fundraiser. I offered to go in his place and can tell that he is relieved. I'm feeling better about this anyway, as I don't really want him around that many people until we know what his counts are.

Once work is done around 6:30pm I head over to the church where Troop 701 meets. I have immediate anxiety. This place has brought me many good and many bad memories. Yet, I am so excited to see many of the people I served on the Committee with. There were holding a meeting and I had to go there for permission to ask the Scouts for help. Not knowing how long I needed to stay, I simply made myself comfortable and settled in for the long haul, which as it turned out was two hours. I spoke to all the young men, remembering so many of them when they were younger and started Scouts with Zack. I explain what has been going on and ask if anyone is interested in helping set up and break down at the fundraiser. Immediately about ten eager hands go up. I had found out that this was a big weekend for most and some are choosing to stay and help instead of go on their trip. I tell them I will be in corner when they are done with their meeting to take name and numbers. While sitting there one of my fellow committee members, from back in the day (when I served) came and asked what has been going on. She saw the poster of Zack and said "he looks sick?, what's this about?" I didn't realize, she didn't know about the cancer. I spent quite a while filling in the time slots, showing pictures and explaining that we are near the end of our journey. Here in such a small community and in Scouts, one of the major "players" didn't even know! I found that so weird, but then again, I have been so busy with my families life, that I didn't know what was going on outside of our circle either. It's very easy to do! When the meeting was done, I had ten eager young men, some that have grown up with Zack others who have never met him, ask to help. Our friend Joe D. said for me to take all the names as there might be a chance some of them can't make it, so one by one I meet and greet these kind boys, thanking them for their offers. I leave with a sense of pride that we were once part of the troop. (Zack had chosen to leave just before his diagnosis, which as it turns out, was the best possible solution as he never would have been able to continue).

I arrive home around 9 pm and Frank has a wonderful dinner waiting for me. Zack is in his room playing his video games and is quite pale. I will be surprised if we don't get blood tomorrow instead of chemo. I had noticed earlier that Frank had called while I was in the meeting. Communication skills be damned in my house, Zack forgot to tell him where I was. Will it ever change? Probably not! We three get a good laugh as I eat my dinner. Exhausted, I crawl into bed, write today's blog and smile at all that was accomplished today. 

Sunday, March 24, 2013

This, that and the other

Zack continues feeling pretty nauseous. He is having headaches too, so that may mean transfusions next week instead of his next chemo. I haven't said anything to him yet, he knows his body so well as a result of all these treatments, so there is no need to point out the obvious. It was great to see him still jump up and run out the door to the auto parts store. He LOVES working on his truck, any vehicle for that matter. He and Frank are going to replace a caliper and feed line on Zacks truck. To explain, he came home the other night and said "Mom, my truck was SMOKING!" He had replaced the brake pads, but it turns out the there was another major part that needed replacing, so his brakes were not in top form. Luckily the rain stopped, so they were able to get on it right away. 

I met my (BFF) Nancy for a pedicure. I wanted to spend the day out having fun, go to see Mom, I had all these ideas in my head, but my body is telling me to just chill! I'm still not feeling up to par, my chest still feels like someone is standing on it, so it's taking me awhile to heal from the bronchitis (or whatever it was). I'm hearing from several people who have had similar, that it took them up to a month to clear up, so I'm giving myself more time. We met early, as Nancy was meeting Sue for more fundraising work. When I say work I mean WORK!!! There are so many tiny details and now they are working on the Silent Auction part. I have decided to donate one of my Father Christmas figures, I am blessed with many and if someone else can benefit from having one and enjoy it, I'll gladly pass it along. When we saw Sue, Zack was talking about asking some of his former Boy Scout Troop (GO 701!!!) to help with set up, break down and clean up at the Fundraiser. I share with Nancy that he had immediately called the Scout Master, Hooper, who thought it was a great idea and told him to come out on Monday night and tell the boys about it and bring a sign up sheet. This is a great way for them to get their community service hours or help towards a one of their requirements for a badge.

As I was returning home from being with Nancy and then grocery shopping, I pass Zack. He was returning the old part for a refund. I call him and offer to buy lunch. Frank is at home working on the landscaping around the house and doesn't want to break his stride. I notice that Zack is only eating half of his lunch (very unusual), he also only ate a salad last night. He said he just isn't that hungry, so we don't push him. Especially still feeling nauseous, who can expect him to eat. Once finished I wanted to go to Habitat thrift store, just to check out what goodies they might have. I luck out when I find a large tile for 75 cents to put under our fire pit (which I recently put on the wooden porch). The tile will protect the wooden floor from any small embers. Once home, I find Zack working hard outside on his truck. He and Drake had gone and picked up a lot of scrap metal and he discovered that one of the items Drake put in the back of  the truck was full of transmission fluid and required a lot of clean up. Frank had gone to get several bags of cat litter to pour over the liquid, which, if the animals got into, is poisonous.  Zack was not amused and (being like his mother.... tell it like it is...) he reached his friend and told him he better come and clean up the mess and pick up the items. He actually didn't want to wait to get it cleaned up (also his mother's trait) so he took care of everything and just left the items to be picked up.

Nukshuk, not yet assembled
Zack and Frank moved on to create a figure out of stones called a nukshuk. (An inukshuk is a traditional sculptural form made of unworked stones and used by the Inuit for communication and survival.) One of his customers asked for him to design this and since Zack was home and feeling up to doing something, they worked together to create it. Once completed, we all settle in for dinner (I actually cooked!) and a relaxing night of more TV. Zack didn't have any friends over, nor did he go anywhere. He just wants to stay close to home right now. At one point I go in his room to check on him and he is sound asleep in his over sized chair, with a blanket over him.

Cousins, Zack, Curtis, Abby and Darrick
Sunday we were expected at Shawn and Floyd's house for a Birthday party. It was our nephew's 4th Birthday on Tuesday and we are all getting together for hamburgers, hot dogs and of course, Birthday cake. Zack said he feels well enough to go, in fact he is kind of excited to go and get out of the house. Frank fixes his "world famous" potato salad. Since that isn't until 2 pm, we were able to relax a bit this morning and in true Frank fashion, "we" watched fishing shows for a couple of hours. Zack slept well until 10:30 am. Sometimes he just needs to sleep off how he feels. He teases when he is in the Hospital that he just wants them to drug him so he can sleep until it's all done.  He wakes up with a big smile and a hug for me (which we know I LOVE!). Our friends Jeff and Kelly are in town for the day (they dropped their son, who is moving to NY City, off at the local airport) and they are then heading back to Tennessee late this afternoon. It was great to see them, we did some catching up and they worked out an arrangement for Zack to take care of their landscaping at their house here, until they rent it out this summer.

After the party, Zack and I return home while Frank got in some fishing. He worked so hard this weekend and didn't get any time in for his favorite sport, Zack of course, teased him and asked why didn't he just take me with him. Frank replied "I don't feel like teaching, just fishing." I stated that I had no plans on fishing in the rain, I would go when the sun is out and I could fish / sunbathe. We all got a pretty good laugh.

Trenton came by the house for awhile. He and Zack were playing video games and then came out to me and asked if they could go out to a Mexican restaurant for dinner. He promises not to be in an area where there are a lot of people, so we told him it was okay. There were planning on meeting Chris T. there as well.

It was a nice weekend overall. Fun, Rest and a little pampering for us all. Zack is going to help Floyd move some furniture for a lady in Sapphire tomorrow and he and some of his friends are going to be putting out the posted for the fundraiser around town. 

Friday, March 22, 2013

More Exciting News......!!!!

Wednesday was a normal day for us all. Zack spent some time with his friend Chris T., visiting with his family and just being typical kids. He was feeling tired, and worried that his counts might not be well enough for chemo on Thursday. He is anxious to get this all finished, I can't blame him. I am working on my anxiety levels with regards to him constantly being monitored. It is as if we are under an umbrella right now, protected from everything and the umbrella will be removed, leaving us vulnerable. I know that seems extreme, but anyone that has been through a crisis like this, for an extended period of time, has full understanding of these feelings. They are neither right or wrong, they just are. I also know, with each day, we will all get stronger and learn to adapt to our new normal, just as we have for the past nine months.

The evening was nice and quiet. Zack spent his night resting, playing video games and on Skype with an old girlfriend who now lives in Idaho. It's always nice to see him have a good time visiting. There was a lot of laughing and cutting up. I must say, he plays it safe. All of his "girlfriends" have been long distance (a mothers When I arrived home, Frank was half asleep on the couch, tired from a full days work.   I had worked late catching up on paperwork (something I love to do every now and then) and had gone to bed as soon as I arrived home. Diverticulitis returned again, so I haven't been feeling my best. Hopefully in the next couple of weeks I can schedule a colonoscopy and see why this keeps returning. I keep having people ask me why I haven't done this yet, but Zack and his schedule must be a priority  it's not that easy, when you are a care giver (I don't care how many lectures I get) to stop to care for yourself. I do the best I can, but since this does keep returning and quickly, I need to get it checked out and at least rule out some things.

It is now Thursday and as I leave for work, Frank and Zack are getting ready to go to the Cancer Center. They have an early appointment so we will find out quickly if Zack gets his chemo today. By 10 am they advise him that his counts are well enough and start him on IV fluids. I can't help but think about the difference in communication between men and women. When I'm with Zack, I'm texting or calling Frank to let him know what is going on, heck I let the whole world know! I found myself calling him or Zack several times for updates. Frank tells me he saw Zack texting, so he assumed he was letting me know what was going on. I had to laugh. It's definitely a gender issue.

I continued to work, taking a nice long lunch break. I went to Moms booth ,dusted and rearranged her beautiful pieces of jewelry. It's always a nice change of pace for me when I can do that. It's part of my creative process that I love to do, decorating and cleaning. She is working on several pieces for the silent auction at the Fund raiser, we are so excited about everything to do with this event. What a great way to wrap up a long journey!

Zack and Frank wrapped up around 5 pm and grabbed dinner on the way home. Zack had slept most of the day during treatment so he was pretty well rested when they arrived home. He was very nauseous, but in a pretty good mood considering. On my way home I call Mom to see how her day went. She mentions about the post Zack put on FB about how many treatments are left. I am in shock, this is the first time I hear the numbers, not the time frame. ! I arrive home and ask Zack and Frank. They both stated that when Zack asked the nurse, she confirmed he has three more out patient and one more hospital treatments. Once those are completed he will have the full course of testing to ensure that everything is still gone. In a couple of months following they will remove the port access. So, we are looking at the beginning of May when he will be done with chemo. YAHOO!!

It is now Friday morning and for some reason I can't sleep. It is 6:30 am and I'm wide awake. I turn on the TV hoping it would put me back to sleep and after a couple of hours Zack comes in. (Frank had woken him up on his way out to work). Zack flops down on the bed like a little child, not the 6' 5" giant he has become. We have some time before his  3 pm appointment today, so we just take our time and rest. Before I know it he is sound asleep and snoring while lying next to Sidi at the foot of the bed. Like any of us, every now and then we simply want to be with our mother (if we are blessed enough, as I am, to have them still with us).

Zack is not in the best of moods when we leave the house, but by the time we arrive at the Center, we are joking and he is teasing me about everything. I love the way he can turn everything around. We arrive and with a single shot of Neulasta in the arm, he is done. Zack tells them he is not feeling well and the Doctor tells us we should have come in earlier so he could get IV fluids. I then look at the Doctor and tell him that we stopped and Zack ate Taco Bell on the way there, so he feels bad but not due to lack of hydration. The nurse and Doctor both laugh and say "that makes US nauseous, if you can eat like that you're feeling ok." Zack looks at him and says "I'm outta here!!! I don't want anything more today, I just want to get done!" We make our appointment for Tuesday which will be his next chemo treatment (Vincristine) and are on the road again. On our way home we stop by to see my friend Sue, who is working with Nancy and Steve on the Fund Raiser. She hasn't seen Zack for many years and since he was feeling a little better we thought a quick visit would be nice. We then go by The Tractor Supply store in Brevard, where Chris works. Having never been in there before I sure go an education and found my next new project. Not really... but aren't they cute?
I tease Zack, showing him the pictures and tell him I'm going to start raising chickens. His exact words? "Good luck with that Mom."

We are back home by 7 pm and since I'm still not feeling that great, sit and relax for an hour or so and by 8 pm I crawl in bed to rest. Zack too has gone to bed early, playing his games and talking to his friends. Poor Frank, just doesn't seem to get the best of us lately. If rest is what can heal us, then we are doing exactly what needs to be done.

Zack plans on working on his truck this weekend. He has been having brake problems and there are a couple of other parts he needs to replace before he can drive it again. The weather is supposed to turn cold again, so my plans are to rest and heal (again!!!) As always, one day at a time, with no expectations. Life has a way of surprising us (mostly with good!!!).

Thursday, March 21, 2013



Tuesday, March 19, 2013

"Mom, let's get this done!"

Sunday was a beautiful day. The sun was shining and it was 74 degrees. I couldn't wait to pull all of the plastic off of the windows (extra protection during the winter), open them all and let the sunlight shine. Frank went fishing with Matt. Zack, who had spent the night at Drake's house came home off and on during the day. His emotions were all over the place. He was happy one minute and frustrated with his friends the next. He was scheduled to go to a friends Birthday party and at the last minute didn't want to go. He explained that he was worried that he would feel out of place. He isn't that comfortable with large groups of people and I couldn't help but think it was easier for him not to deal with it. I explained that his friend would really want him to be there, so at least go and make an appearance. He returned later that evening after being there for several hours and had a great time. He casually mentions that he is glad I encouraged him to go. 

I had spent the day doing laundry, cleaning around the house and "purging" some things that I have had for a long time and ready to pass on via donations to our local thrift store. I worked a little bit outside as well, it was so beautiful I felt I needed to take advantage of the weather. Rearranging anything that isn't nailed down (and at times even those that are) is my form of therapy. I set up the fire pit on the patio and move the table into another area. All of a sudden, half way through the clean up my chest starts to feel like someone is standing on it. It's time to quit and rest. I don't want a relapse of the past couple of weeks. It's so easy for me to tell Zack what to do and not do in order to keep him from having a relapse of pneumonia, but I have yet to listen to my own advise. This time I will listen and rest the balance of the day.

Frank and Zack return home around the same time. Both had a good day with their respective friends and hobbies and were ready to stay home and settle in for the afternoon. Zack has Donald with him and they are later joined by Trenton as they all play video games. Frank and I relax on the couch and watched some our our favorite shows. I'm so glad I took it easy in the afternoon and evening, as I already started to feel better.

Monday was spent working. What a contrast in the weather, the wind was strong, raining and it was again cold. Yuck!!! Zack stayed at home with Donald and did a few chores. He is tired and again had a headache, (we are never sure if it is from low blood count or dehydration). Zack and Mom both have appointments in Asheville tomorrow, so I send him to pick up Mom in Hendersonville after work. They came by the office and the three of us (Frank doesn't like Chinese food) go out to eat. Since we had an early morning Tuesday, we all settled in for an early night.

It is now Tuesday morning and we are all awake at 6:30 am. This is my usual time to wake up, but for Mom and Zack, not so much. We arrived at the Cancer Center first for Zacks appointment. They access his port and take his blood for labs. He immediately starts on IV fluids in preparation for today's chemotherapy. Around thirty minutes later the Doctor comes in and says his counts are not high enough (his immune system is too low for them to safely administer the chemo). We schedule for Thursday, hoping that his counts will be up enough by then. If not, then it will be next week Tuesday. Since they must still do a couple more things for him, I take Mom to her appointment knowing that he will be done just as we are finishing up with Mom. Luckily, the tests show that everything looks good for Mom. Her Doctor orders a set of chest x-rays and explains that "if" the cancer were to return, it is usually in the lungs.  He is not concerned about Mom, as she has never been a smoker, which can increase the risk. We were told the same about Zack, the first area they look is the lungs and then other major organs, if it were to return. BUT, we are not going to "go there!".

We pick up Zack at the Cancer Center and head to Asheville Radiology for Moms x-rays. It doesn't take long and we are again on the road. Rhonda had stopped by the Cancer Center earlier and we all agreed to meet for lunch when all the appointments were finished. While at lunch Zack gets a call from Leah who is in town with her baby. She needs a ride back to Brevard, so we tell her to come on and she can ride with us. All of a sudden we have a full table and full car! As with any 19 year old there was a bit of drama and since I have no problems giving my opinion AND she was trapped in my car, I gave my opinion ALL the way home!!! She may never want a ride from my again, but maybe some of what I shared will sink in. She is a sweetheart, but is headed in all the wrong directions with her life. Both her parents and I have tried to get through to her about her choices and as with most teenagers "she knows best." I shared that she has so many choices in life and her path is up to her. I can only keep on her and pray for the best. I am a firm believer in "it takes a village to raise a child" and she is a large part of our village, as are all of Zack's friends.

As we head towards Hendersonville to get Mom some groceries, she is all of a sudden tired from the day and asks to go home. I totally understand, feel a bit bad because of the "extra" unexpected company, but know that Rhonda is able to take her shopping on Friday. Mom promises that she has everything she needs until then, so we bring her home and return back to Brevard, dropping Leah off at her Dads house. We visit a little while with Bill and Drake and return home. The days events now have hit me and I'm ready to sit and chill for the rest of the evening.

Zack was invited to dinner at Bills house, so Frank and I have a nice quiet quick dinner I prepared (yup I actually cooked!). Zack returns home with Drake and Donald for the evening and some video gaming. He discusses his treatment with Frank, who will be taking him on Thursday and explains that he could have had it next week, but told them to "get it done!" We somehow managed to fill everything into one day and I'm actually looking forward to the next couple of days at work. 

Sunday, March 17, 2013

The many faces of Courage!!!

We all wake up as if it's a usual working day. 6:30 am comes early when you are snuggled warm in your bed and it's your day "off" from work. I manage to crawl to the shower, get dressed and wake up the boys. Donald is not an easy child to wake up, so I threaten to leave him if he isn't ready. Zack, having been in a horrible mood last night, woke up cheerful and loving. He even managed to give me an unsolicited hug, a real treat coming from a 17 year old! Donald, who doesn't believe in coats, walks out to the car wrapped up in Zack's old blue quilt. Little did I know, what an effect that quilt would have on my immediate future.

We arrive at the Cancer Center just in time for labs. Zack, as it turns out, needed a double blood transfusion and platelets. His counts were down very low and this would guarantee a good weekend for him. He had started having headaches the night before, usually a clear sign that he would need something. Both boys were in a great state of mind. They were actually hilarious all day, telling jokes, making fun of games, pictures, pretty much anything they could get away with, they did. We had a couple of hours before the blood would arrive, so the nurses told us to just head out and do something fun. We couldn't go where there were large crowds, so we decided to go to the local Habitat thrift store. There was a lot of open space, so we felt safe going there. All the way there and back to the Center, the boys were talking about all the good looking girls there were in town, how they were going to move there, because of all the pretty girls. Let's just say, hormones were ragging!! It was actually quite fun to have them, especially Zack in such a good mood. During the course of the day, the nurses even mentioned what a good mood he was in and how he is usually angry when he has to get blood. 

During the day, there are phone calls back and forth with Nancy and Steve, who are working none stop with Sue on a fund raiser to be held April 20th. With each phone call, we are all getting more and more excited! Three bands are volunteering their time and Steve is going to cook BBQ along with several friends from our former Boy Scout days. The Bishop Brothers have been friends of Franks and his brothers since childhood and to have them come and volunteer their time touches our hearts, as well as the other two bands, which I can't wait to see and Thank personally! I see it as a community of friends and family coming together under one roof, to celebrate the long road Zack has traveled. Everything looks so professionally done and we feel so lucky to have friends willing to take so much of their time to put this together. It has been weekly and now almost daily in person and phone meetings between Nancy and Sue as they organize the event. I remember when Nancy first told me she didn't know a thing about fund raising, now I think she has become an expert. To witness my two dear friends working together effortlessly as if they have done this their entire lives it amazing!  I showed the poster to everyone at the Cancer Center and they asked if a professional designed the poster!!! I was beaming!

Towards the end of the day, I take a two hour nap and am later teased by Donald that I am a rather loud snorer!! I simply laugh and agree! We were finished by 5 pm and since we were all ready to have some fun, we went to the Salvation Army Thrift store (per Zacks request) and Target, where I could get a lamp to replace the one that Sidi had broken, the boys also wanted to look at some games and music. We then grabbed dinner and that's when the day took an unexpected turn. While having dinner I received a call from my brother, Bob, who's dog, Courage, was in bad shape. She had gotten worse since Thursday's trip to the vet and now, we were advised to bring her into the emergency hospital for hydration and to see if strong IV antibiotics would turn her around. I arranged for Frank to meet us half way and pick up the boys so that I could go straight to Moms and then the Vet. 

I arrive to a very shook up Mom and sad Bob, who carries Courage out to my car. I had kept the blue quilt to cover the back seat and later to carry her into the emergency clinic. Mom offered to go, but there is no need. I have been down this road many times and though it isn't easy, knew I could handle the situation on my own. Once I arrive, they are expecting us, so I immediately carry her into the small office. The Dr. advised to keep her on fluids and IV antibiotics over night and see how she is this time tomorrow. So, a couple of hours later I am on my way home, reporting back to Bob for the last time tonight.

I awake around 9:30 am Saturday morning to a couple of missed phone calls. Steve called and needed my help to set up my paypal account to accept online donations for the fund raiser. Several of our friends from Europe and around the Country had asked how they could donate and though I feel weird accepting anything from anyone, they are adamant, so he gets that all set up on the website The other calls were from the Vet. So, I hit the ground running, so to speak. The vet has determined that Courage got worse through the night and was unable to keep anything in her system. He took her off of the fluids and was keeping her comfortable until I could arrive. My brother had made the decision that it was time to let her go, she was not in pain, but her quality of life was gone. He didn't want me to "have" to be there, that's when I pretty much told him "I know I don't HAVE to, I WANT to be there for her and you." I arrive  at the emergency center around 11:30 and they are expecting me. The Dr. comes in carrying Courage in the blue quilt and spreads it out on the floor. He and I sit on the floor as if we were having a picnic with her. For an hour, we just sat there talking to her, petting her as she lay in the sun and share our favorite animal tales. He and his wife just had to put down their dog a couple of weeks ago, so he was still fresh from that pain. We talked about Zack and the similarities in the counts he was giving me for Courage, how weird it was that I understood what he was talking about. He shared his mothers journey surviving breast cancer and how strong Zack must be to handle everything at his age. It was then, that I told him it was time for Courage to go and be at peace. As I held her sweet head in my hands, he administered anesthesia and she was sound asleep, passing quickly and peacefully. Crying I looked at the Dr. and said, "You know, I haven't worn mascara in a year, because the days I put it on I end up crying....I'm so tired of crying!" He gave me a big hug and said how sorry he was. The nurse came out with some of Courage's hair tied in a blue ribbon and a paw print in clay marked with her name and the year. This is their way of offering their condolences.

I bring the hair and paw print to Bob and grab Mom up to get her out of the house for a couple of hours. She is shaken and sad, as of course is Bob. I know he needs some time alone to deal with his loss and Mom, who has been hand feeding, cooking and helping with her care just needs to get out. We have a nice lunch, go to a couple of thrift stores and I bring her back home. She now feels that she will be better able to rest and has promised to engross herself in one of her movies. Bob is sound asleep (he didn't sleep at all the past few nights), so I gently give him a kiss and head back home.

We are expected at our friends house Steve (Wall) and his wife Karen Ann for dinner and poker tonight, so I take a short nap when I arrive home. Zack is outside putting new brake pads and shoes on his truck as well as changing the oil. He had mentioned to me this morning that he was tired, but when I told him to take the day to rest, he said "Mom, I'm 5,000 miles past my oil change!!" His great grandfather would be pleased (he believed in changing the oil every 3,000 miles without exception).

We arrive at Steve and Karen Ann's place in Hendersonville and imagine my surprise when no women are there!! Zack joined us as well, so since there were too many players I told Zack to sit in and play with "the big boys". He had a great time and his Uncle Mitch took the time to help him out when he wasn't clear on how to play. I bundled up in a corner recliner playing my video game and later watching 24 on my phone. I was quite content listening to the guys laughing and including Zack in on their conversations. They enjoyed having him there and he got quite the education in poker playing. It was actually nice to sit in a corner, relax and listen to the teasing in the other room. Around 10:30 pm, I decided to head out and have Zack bring Frank home in the Bumble Bee. It was kind of "sneaky" on my part. I was worried about Zack driving home alone at that hour, so how better to have my cake and eat it too!!! They arrived home within thirty minutes and Zack is again gone, this time to spend the night at Drake's house. He hasn't been there in a couple of weeks, so I'm glad he is able to continue with his normal activities. Next week Tuesday, we start another round of chemo if his counts are good, and this is the nasty stuff that tends to really make him sick, so I want him to enjoy himself as much as possible.

I will end today's blog with something I heard on a TV special, it may sound weird, but I feel it is so true!
As you live your life, it appears to be anarchy and chaos and random acts of non related events smashing into you and you wonder what in the world is going on! Later in life, when you look back, it all comes together, like a finely crafted novel and it all makes sense. "(author unknown).  

Thursday, March 14, 2013

"It's a great day for a ride Mom"

Donald On Zack's ATV
  When someone asks "how is your son?" most of the time I answer with a simple, he is good, we had a rough day or rough week. This week it gave me such pleasure to say "He is great!!!" This is the first time in quite awhile where he was more relaxed, enjoyed himself and was a "typical" teenager. Wednesday's fun continued with him riding his four wheeler around the neighborhood and visits with his friends. His spirits have been up and his health has been very good, considering he had a week of  pneumonia followed by a week of chemo . This kid, if I may say so myself, is amazing! His attitude, his strength simply amaze me.  

I am finally feeling better and getting over this "crud". Work has been great and as always the "normal" days have been wonderful. Knowing that Zack is out there, enjoying himself does my heart good. I was asked about his schooling and it gave me such pleasure to say "he is a graduate", he will cross the stage with his friends. Within a few minutes, I take time to think about that phrase. Wow!!! He really did it!! and because he did, he is now able to enjoy his free time in between treatments. Not having to worry about what must still be done and being able to focus on his healing. 

Today, he picked up and brought his Meme and Courage (my brothers dog) to the vet here in Brevard. They were quite anxious about her prospects and having been to our vet several times with our own animals, Zack was quite comfortable with this venture. Mom (Meme) has been quite shook up all day. She so loves all of their dogs (they have three), but she has become especially close to Courage, feeding her by spoon when she doesn't feel like eating. It turns out that Courage has several infections and it is our hope that she will get better by next week. She is an old dog, maybe around 14 years old, no one knows for sure as she was a rescue dog.  Zack returned and spent the rest of the day hanging out at his friends house. 

I arrive home from work and find Zack in the kitchen fixing dinner, Frank outside grilling steaks and Donald asleep (he was up until 1 am last night for whatever reason I don't know). Zack was in a lousy mood and it wasn't until much later that I understood it was because we go back to the Cancer Center tomorrow. He has had a headache off and on today and that is usually an indication that he needs a blood transfusion. His grandmother Linda called tonight and jokingly told him he could have the day off tomorrow. He gladly accepts, smiling at the idea. Sometimes "we" just need to be acknowledged for our feelings, once he realized that we understood how much this all sucks for him, he didn't feel quite so bad. 

Tuesday, March 12, 2013

"Sometimes you just have to get out of your own way"

Sunday was another great day for Zack. He was feeling well and spent the entire day with his friends, out in the forest, driving to Hendersonville yet again, to take Donald to see his family and a few friends. It was so good to see him having a good time and being out and about.

As I continue to rest , doing just a couple of loads of laundry, I have time to think about the past few weeks and its effect on both my body and mind. How Zack has survived everything both physically and emotionally is beyond me. Does he really have youth on his side, like everyone professes? Is it his attitude? I am known for my positive attitude (most of the time), but is this the "warning" everyone was talking about? Have I finally broken down? 

I understand in general, when one doesn't feel well, the slightest little thing can set us off. Was it the "event" that set me into a downward spiral or was I already on my way and thus creating the "event". I probably will never know, but I am relieved that it finally did hit me!! It's like I am waking up from this nightmare and knowing that we are nearing the end of this particular journey, that has me looking down the road and wanting to create something to look forward to for us all! Not having the energy to do much of anything and having Frank and Zack's full support and help, I just sit, think, cry and sleep. 

By Monday, I am feeling a little better physically. I still have a slight cough and deep voice, but not like Louis Armstrong as my mother called me earlier in the week. I force myself to get up with a good attitude, knowing that as I proceed with the day, I will slowly turn it around. Our patients have a way of bringing the best out in me, as I must think about them and not myself, what do they need today. As Nancy says "getting out of our own head, is always a good thing." I prefer to think of it as getting out of my own way too!! They are kind and ask about us, especially since I have missed a couple of days of work, which in the past was unheard of. I tend to get in my own way, in the way of good, feeling undeserving for some stupid reason. What makes me or us so special always comes back to haunt me. As suspected, I am feeling a little more up as the day progress. Zack went to the Cancer Center on his own. He was scheduled for labs and a Neulasta shot. I get a call a couple of hours later from Julia (who is back from maternity leave) and all of his counts are good. She tells me that Dr. B. has my sniffles and cough. I tease and say I will stop smooching on him so much, followed by.... I got MINE from being in the Hospital, kind of the same place he hangs out. She laughs and agrees.

When I arrive home, Frank tells me we are going to have company! Hans and Andrea are coming up to see his father, who is in Elizabeth House with terminal cancer (there's that word again!). They are bringing dinner and are going to camp out in our home office. I think for the first time, maybe EVER.. I don't want anyone here. I adore the couple, but I have no more to give. I can't be all smiley faced, glad to see anyone, when all I want to do is crawl in bed and sleep. Poor Frank is so excited to see his old friend and tries everything to cheer me up. When they arrive, I can't pretend. I never can, everyone can read me so well. Hans hugs me and says "we shouldn't have come, your not well!" THAT had me feeling even worse!! Here they drive five hours and I can't even manage a smile. These are our friends and honesty is a must! I explain (he can tell by my voice) that I have been sick, and everything that has happened the past two weeks with Zack. I share that I have nothing to give, but a tiny smile. He too is sad, his trip may be the last time he can see his father and though their relationship hasn't been great, it is still his father. While we eat dinner, he gets a call and is told that there is a room with one of his sisters. The family is meeting to discuss when everyone can go and see their father, so it is for the best that they go and stay there. I don't argue, I simply say, "next time, we will be ready to party as all of this will be behind us and I will no longer feel like crap." With tons of hugs they are on their way, I ask the boys to clean the kitchen and within minutes I am in bed asleep.

It is now Tuesday morning. I plan on resting today, not going out, just chilling, when all of a sudden I remember it is Tuesday! I MUST go to my weight watchers meeting! I haven't been in a month and want to get back on track. I go thinking I will have gained and ended up loosing!! Since I am already up and out, I call Zack and he and Donald meet me for breakfast. We then go and pick up his Senior ring, which has been ready for a couple of weeks now. He had given me half of the money he had received as early graduation presents, so between the two of us I could finally pick it up. At breakfast Bob sends me a text and says "I'll treat you guys to lunch if you want to pick up Mom and take her out!" Zack, Donald and I agree, if Zack drives. He loves to drive his truck and I'm tired from all the trips to and from Asheville. So we head out to Hendersonville and have a nice lunch with Mom. I am still not myself, but no one has any expectations   This is who I am for today, tomorrow I may be back to my old self. Even I don't know. Once we drop off Mom, we decide to go and see if  Jamie is home (sister in law). She is just a couple of blocks over from Moms house, so why not. We surprise her and Curtis, who were trying to nap, with not much luck. Curtis loves his cousin, especially when he can pounce on him like a trampoline. We visit for about thirty minutes and head back down the road.  Zack asks for me to show him how to get to his uncles house, so we drive by there. Now, he says, I can find all of my relatives and visit when I don't have anything to do. He loves having his family close. We don't get to see them that often, so when he is well, he just hops in his truck and goes to see them. He and Donald drop me off at my car where we met and are on their way. I grab a frozen lasagna for dinner and later find out that they went to see his other Aunt Sissy and Cousin Darrick and then former neighbors Francis and Garfield. 

It took me all day, but I am coming back!! The fact that I even "thought" about dinner was a miracle in and of itself. I put the lasagna in the oven and yup, start to re arrange the living room. I needed to nest after being in the Hospital for so long. Kind of a way to remind myself, this is home and where we belong. Zack, Donald and Frank all tease me and then disappear  They KNOW they will be called in for the heavy lifting. Frank asks "why?". My response? "because I can!" What more can he say to that!! "Well, I'm going down to the pond to fish, call me when dinner is ready." I just laugh, he knows to stay out of my way when I'm being creative. Leah, Donald, Zack, Frank and I all have dinner together and talk about our day. I am so glad I woke up and accepted what the day had in mind for me. Nothing was planned, yet it was the perfect day. I got out of my own way, my own head and "allowed" myself a good time, which in turn allowed everyone around me to enjoy themselves as well.

The next two days are working days for me and I'm so grateful. No labs until Friday, when we see if Zack needs a transfusion  He feels well and looks very good. His eyebrows and mustache are returning, but he is quick to remind us they will be gone again in a couple of weeks when he has his next strong chemo treatment. Until then, we can watch and admire, how well he heals and what a blessing he is to have around. 

Saturday, March 9, 2013

So this is how you pass the buck....

Friday morning I woke up around 5:30 am, unable to sleep. My cough is getting better, but I know there are three issues I must address' today and until they are done I won't rest, physically or emotionally. I was so glad Zack had a peaceful night. He knows we will go home today (or really really hopes we do) and that has brought an end to this two week hospital stay.

With him still asleep at 8 am, I step out into the hall and am greeted by the same nurse that took care of him yesterday. I am not smiling, I am uncomfortable that I must confront her as I am more than willing to do so, but not eager to. I ask who dropped the ball yesterday with regards to the chemo being four hours late. She said the pharmacy, I asked what time he will get it today and she said, it's "scheduled" for 9:30 am, but it is up to the pharmacy to get it here in time. I asked what I could do to help make this happen. She said "nothing" the order is in and they "should" have it ready. I mentioned that the "order was in yesterday as well and we know how that turned out!" She continued "I called this morning and said it was very important for them to get it up here in time." I thank her and remind her that I will be more than happy to go down to pharmacy or do whatever I need to do to help. 

I head over to the Cancer Center to meet with Karen, who is not expecting me. I called ahead, but by the time I arrived, she was being told I was on my way. (the center is right across the street from the Hospital). Karen and I go into her office and I share yesterday's events with her. What I love about Karen is, if, for some reason she feels I was expecting too much, she would tell me, in this case, she said "you expected everyone involved to do their job!" I am emotional, I am tired, no exhausted and she can tell. She is concerned about me and says she hasn't seen me in this shape. We address each issue, one at a time. "playing devils advocate" she tells me "some may ask why did you have a stranger who claims to be a doctor call about your son?" She knows me "you would NEVER hand your phone to anyone you know let alone a total stranger" I told her THAT is how exhausted I am! I tried everything and that was the last resort. She said "some may see it as you trying to "trick" them", my response? I didn't but what if I did? The bottom line is, they gave out information when they should not have! She agrees.

Karen calls in one of the doctors to make sure it is safe for Zack to now start at 9:30 am, since he received it so late. We later find out the doctor on call ordered it for 12 noon, because it would not have been safe. We then work out for me to meet the head nurse back at the hospital. I don't want to drive back there and find parking, so I get on the shuttle which goes between the two buildings.

I arrive and meet with the head nurse, Kim. She is the type of person that can laugh and smile and yet you feel there is a knife close to your back. NOT my favorite personality! We are the ones on trial here, NOT the staff and that doesn't fly with me. To gain the upper hand I let her know that "I'm a whistle blower, and have already had the ER investigated by the Joint Commission, so I will do whatever I must to get the job done properly, safely and in a timely manner." She questions who this "Dr" was that called and I tell her the story, she asks for her name and says "well, we have a Dr. that has the same last name and sounds like a woman." BULLSHIT!!!! was all that came out of her mouth from that moment on! She insinuates that I was at fault for having her call. I told her I regretted NOTHING of what I did, I would do it all again, because I was not getting answers from anywhere!!! Zack's Dr. later came in and "scolded" me for doing the same and said I should have called them... I DID!!!! was my response!!! enough said!!! I asked them if they have ever seen the movie Terms of Endearment with Shirley McClain... they all had, I said "well from now on, MY warning phrase will be "Don't make me go Shirley McClain on your ass!!!" and you will know I mean business!! (in the movie Shirley's daughter, played by Debra Winger is in pain from cancer and she is grabbing staff in the hall to get her daughter pain medicine, she was terrifying actually, but any good mother would do the same). I wanted my son to get his treatment so he could get the hell out of there!! He was DONE.. with being there! We left it with Kim promising a print out of the timeline with regards to the chemo, so we could see who had it when. Dr. B said she was NOT going to make the pharmacy rush to get the chemo because human error could happen and that was not worth it!! I agreed!!! I just needed someone to communicate with me what was going on!!! She then offered the biggest slap in the face "YOU WEREN'T HERE!!!!" "Oh no.. you didn't go there!!!" I didn't dignify THAT with an answer!!!!  I am exhausted and emotional and at this point , tired of talking in circles!!!

I need to cool off and Zack, who was present for this entire conversation, didn't need to hear the crap anymore. I leave, take the shuttle back to the center and go to the office supply store for much needed paper, etc.... I am in a fog, I drive to Steinmart thinking "girly" stuff will cheer me up. As I walk around the store changing between talking to Mom and Nancy, I walk out empty handed. I was a zombie just trying to process the past two days. I want to be home, but at the same time worry Zack will have a relapse once back home. He is totally healed, but yet the fear is still there. I convince myself that I'm a crazy lady right now and just need to return to the Hospital and rest. While talking to Nancy I find out a young man who is close to us all was brutally assaulted this morning, having his head bashed into the concrete ground twice, fracturing his skull. He is in the same hospital as us in Neuro ICU. "What the hell is happening to our kids?" is all Nancy and I can say... Zack, these two girls from our schools and now John? This isn't supposed to be this way, they are supposed to be kids, have fun, be innocent! 

While in touch with Zack, I learn his chemo did come in time and we will be able to go home around 9 pm tonight. I return, start to pack after eating lunch and carry a couple of loads to the car. This way when we leave we just walk out the door and on our way.  After one of the loads I head to the ICU to see the family of the young man, John, who was injured. They don't know me, but John worked with Frank and his best friend is Nancy's son, so I can introduce myself that way. I meet his mother, brother and sister and her husband. They are angry and wondering how this could happen. My only comfort is to remind them that by all rights Allie should never have survived and look how amazing she is now! John will be okay, and has amazing friends and family for love and support. As I leave, his mother asks me to please get prayers going wherever I can, so as soon as I return to the room, I post on FB and the prayers are still going strong!

I return to the room, which is not the same, no foot stools, no lamps, no extra little comforts. It looks just like what it is, a hospital room, bland, cold and now full of negative energy from and the crap we had going on. I want out! Zack wants out! We want to be home where there is love, positive energy and our own beds!! Zack asks about John, then asks how I am. He has been asking me that a lot. He knows I'm not feeling well and wants me to take it easy. We order hot wings to be delivered, he devours his and I can barely eat mine. He is so amazing!! He has just finished five days of chemo, had pneumonia and is now sitting in the chair making jokes about how much faster he can devour his meal than I. 

I find out from Nancy that her son, who is on his way home for Spring break, is going to come by to see John, who is now sitting up in a chair recognizes people, but is still in danger. He has a shunt to keep his brain from swelling. I call him and he is on the 1st floor. I ask if I can come down and give my "other" kid a hug!! So we meet in the hall about ten minutes later. He looks at me and says "Brie, we have to stop meeting in Hospitals!" "So true, is my response!!" He has seen a lot, first with his sister and her accident and now with his best friend. He is a strong, sensitive young man and as Nancy and I joke about, a fellow Taurus!!! He tells me how he is trying to help his friend and I remind his that he is the"grounder" he keeps everyone grounded. He smiles and says "well Brie, you are the rock!" I laugh and say, "well right now, I'm a rolling rock ...  all over the place and not knowing where I'm going." We give each other a big hug and promise to give his regards to Zack. 

We spend the next couple of hours watching TV, and once Rhonda arrives to pick up her pillow and comforter we are discharged. I offend her when she tries to find out what happened the past two days and tell her to "read the blog". It was never my intention to do so, and every the diplomat Zack steps in and within two minutes, tells the entire story. With an apology and a great big hug, we part ways. Zack is on the phone getting his friends to meet us when we return. As we pull into the drive, there is Drake, Donald and Frank eagerly awaiting. I left everything in the car, hug everyone and crawl into bed. Within an hour I am sound asleep!! I wake up about three hours later and get out of bed to check on Zack, who is still up, talking to Donald (who has again moved in) and remind him how crucial it is to drink water!! "I know Mom, I've already had three big glasses!" With that, I kiss Frank again, and am back asleep. 

Today, Saturday was spent in bed most of the day. I am not feeling well again and know the only way I'm going to get over this "cold" is to rest. It's hard, but I managed to rest most of the day. I did change the sheets, made the bed and now am getting ready to crawl back into it for another peaceful night. Zack, on the other hand, was feeling great and as a surprise to his Meme, stopped by to see her, then went with Leah and Donald into the Forest (at my suggestion for fresh air!). Mom said he looked so good and it just melted her heart to see him. I was surprise, as I had no idea he was going to do that. I was so glad he went to see her. It's the little things that bring so much joy, to everyone involved!!

The drama of the past two days is gone. The journey continues with a little bump in the road, but nothing we didn't survive. Prayers continue for John as we know he too will have a new journey to his own recovery. But, just like us, his support system is amazing and as we well know, with friends and family, we can handle anything!!!

Friday, March 8, 2013

"Calling all Doctors.... nurses... pharmacists...."

According to Frank, who spent Wednesday night in the Hospital with Zack, they both got plenty of rest. Zack's chemo was to start at 9:30 am ,but by  lunchtime (1 pm) when I called to check in, he still had not begun. Thus started the journey to a whole new experience... for everyone! 

When Zack told me, quite angrily I might add, that his chemo treatment had yet to begin, it was time for me to step in. I had finished a quick lunch and was in Moms jewelry booth checking to make sure it was in order. (it has been at least three weeks since I have been able to do so.) While fluffing the booth, I called the nurses station asking why it had not started on time, they blamed the pharmacy, the pharmacy blamed the nurses, The receptionist at the cancer center didn't understand my question, which was "if treatment is so late, does that push back the time for us to go home." Their answer: "It's up to the Doctor on call what time he goes home and if he drinks enough fluids." Okay, so I'm getting no where. I'm frustrated because I'm getting all of this double talk but still no chemo. I have only an hour until I return to work and need to get this resolved. PERIOD!! A young woman about thirty "something", walks up to me and asks "where is your son?" (of course) she had over heard my conversations (I'm not known for my subtlety). She said "I'm an internal medicine Doctor, I'm not currently practicing because of stuff like you are going through, but I would like to help if I can." Now, we all know under normal circumstances I have no problems kicking butts and taking names, but today, I'm exhausted mentally and physically is catching up quickly" I hand her my phone and she begins to call, first the pharmacy "This is Doctor Kate ..., what is the status on the chemo for Zack Fisher, 17 years old.... Oh when did that go into the .(medical term I'm not familiar with.....?,) please connect me to the nurses station in Peds." "This is Doctor Kate... I want to know if the chemo is hanging for Zack Fisher and why there was a delay of over three hours." Angrily the voice on the other end says "I'm not his nurse!"..Dr. Kate responds with a firm" I'll hold!", "oh, okay let me go and see what his nurse says." A few minutes later "His chemo is hanging, the reason for the delay was pharmacy was backed up and we just got the chemo" "oh really? pharmacy just told me you have had it for two hours, thank you very much, good bye". With this, Dr. Kate hands me back my phone and says " he has the chemo now, but no one is accepting responsibility for the delay." THIS is why I'm not practicing! I heard everything that was said (speaker phone) and it isn't until later that it hits me! This woman, whom I have never met, is not affiliated with any office, hospital or business in the area (she just moved here from SC near Columbia) was just given all of this information about my son! No one ever asked his full name, birth date, or who she was? Not one person!! Dr. Kate asked for my name and number and said "there is a reason we met today, we may not know why yet, but I'd like to think it was meant to be." I agree and so we exchange numbers. I tell her she has to go back to medicine, patients need Doctors that are strong advocates.

Knowing I may have a battle at the Hospital later, I at least feel a sense of relief that Zack has what he needs for now. I can return to work and focus on my job. I finish out my day at work and agree to meet Rhonda for dinner, grabbing something for Zack at the same time. Frank is worried that I may just need to go back to the hospital and rest. I remind him that I have been eating in my car on the way home, to the hospital or eating alone and just need an hour or so of company. He says "I know how you feel, I just wanted to make sure you don't run yourself down too much." A relaxing dinner is just what I needed. Once we finish, I run upstairs in the Hospital to Zacks room, drop off his dinner and tell him I'll be right back as I bring down the two footstools to Rhonda, who is waiting at the now locked entrance to the Hospital. (they lock the doors at 9 pm). With anticipation of leaving either Friday late or early Saturday the less I have to move all at once the better. 

On my way back down the hall, I see Zack's night nurse. I start to explain what happened (of course they know I am pissed and were anticipating a conversation). What they didn't expect to hear, was how much information had been given over the phone to a total stranger. Within minutes I am surrounded by nurses including the night shift head nurse who are are listening in horror. I tell them, I'm not concerned for my sons safety, or even information about him in particular... hell I'm writing a blog!! But explain that with HIPPA laws, this was a BIG RED FLAG for them and they need to address the situation.  They explained how they have a protocol to follow and this went against everything they are supposed to do and not do, especially in pediatrics! It's a fine line for me. I care about these people, they take (for the most part), very good care of Zack (and me). I really don't want anyone to get in serious trouble over this, but as an advocate for others they need to know this was unacceptable and perhaps can save them from a major incident down the road. 

I was told that the head of nursing would be coming to see me tomorrow, possibly an administrator as well. I understand that we will have the same nurse, so perhaps she can help me get to the bottom of this. For now, my objective is to get my son home as soon as possible. Even with the delay in chemo yesterday, he was in good spirits and appreciated all my efforts to get it sooner. He knows I will do everything in my power, even if it means leaving at 10 pm (not my favorite thing to do) for him to wake up in his own bed. No beeping machines, no finger monitors, blood pressure cuffs, tubes coming out of his chest or peeing in a container. Just his bed surrounded by all his favorite things!

I settle in for what's left of the night and by 10:30 pm all lights are out and we are fast on our way to sleep. 

Wednesday, March 6, 2013

Day three of five.....

It is Wednesday morning and I awake to snow on the roof! It is light, but continues to fall and is a beautiful sight! Luckily I had back up at the office in the event either it snowed (true) or didn't feel better (unfortunately truer). Zack and I had a little better nights sleep, but the coughing for me continues and his monitor just wouldn't stop beeping all night with " air in line". This is not uncommon, but still just as frustrating, especially in the middle of the night. Zack's has the patience of a Saint during the day, but at night, when trying to sleep... not so much and who would.

I am blessed that Jessica offered to work for me all day. She and the Docs have made it possible for me to stay with Zack and now, even though he is no longer sick with pneumonia, take the day to try and get over whatever the heck it is I have. I feel better, the cough has subsided quite a bit and no matter what, tomorrow, I will be back at work. I simply can't take that much time off without things falling behind. I take full advantage of the time "off" and make phone calls to continue in my efforts to work out payment arrangements with the Hospital and Cancer Center. Being someone that does most of my stuff online, I set up monthly payments so I just have to click one button and it's done. In order to stay on top of things, I need to make things as easy as possible. One event, which I continue to work on rectifying (or allowing THEM to rectify) happened yesterday. I contacted Wells Fargo Dealer Services about my car payment. I was a couple of months behind and with only six more left contacted them to make arrangements. When explaining that sometimes food and gas must take priority, and explain our current situation the woman says "Well I guess you want to make sure you have a car so you can go and see your son, don't you?". She further goes on to ask "which Hospital is he in?" Outraged, I tell her that it is none of her damn business where he is, "what is she going to do send a tow truck while I'm in his room?"  " I only owe six more payments, obviously I pay my debt!!!" I have since been able to make a payment, but have reported her behavior via Wells Fargo FB page and was contacted for more information so they can see how they can "help". I have worked with debt collectors off and on  in my life (hopefully not too many people have had to experience this), having said that, I have NEVER been more insulted than with this woman. I can assure you, this will not end here tonight.

Off and on during the day, Zack and I switch from who wears the headphones, while watching our favorite shows. The nurses tease us, one minute they hear the "ticking of the 24 clock" from my show and the theme song to "Cleveland Show." Bryan tells me about certain ringtones I can download. It only takes me a few seconds and well, lets just say I now have pretty cool ringtones on my phone all for free!!!! Zack of course, looks at me like I'm a nut case!  At some point during the day (the hours all start to meld into one). The young girl's, brother comes by with his friend to say Hi to Zack, he has just been visiting his sister down the hall for a couple of hours and you can tell is eager to get back home. He hands Zack a package of puddings, kind of cute actually, shakes my hand as I introduce myself and is out the door. I ran down the hall to say thank you and she is watching a movie, she has a big smile on her face as her mother is sleeping soundly on the couch. This is an all too familiar scene and I can only hope that their journey is not as long, and is full of the love and support that we have been blessed with.

We are on day three out of five. Zack is counting the hours and who can blame him, he hasn't even left the room except to go down the hall to fix his hot wings. The Doctors have pushed up his chemo by an hour each day so that we could be out by early afternoon on Friday. For now, Frank is on his way. The snow has melted and it is safe for me to go home, rest and tomorrow head into work. I return tomorrow night and will be bringing Zack home.