Thursday, January 31, 2013

Proud Mama!

Well, the exciting news in our little town Yesterday was the 64 degree weather, 70 mile an hour winds with tornado warnings and flooding. Luckily we live high enough above the creek, are protected by a mountain and have easy access to our house. Our instructions to Zack were to stay home and not go anywhere. Several of the roads were closed early in the day due to heavy flooding and with strong winds it was near impossible to keep on the road.  Zack's color is getting more fair so we would be surprised if he doesn't get a transfusion on Friday. He is tired, but in good spirits, mostly playing video games or watching his favorite shows. 

Since I worked late I haven't had much time to really sit down and talk with Zack. He has had his friends over after work or school and with the weather being so bad Donald stayed another night. He still doesn't talk much about his mother. He tells us he has a hard time seeing her this way and yet he hangs out with Zack all the time. Is it possible that all this kid knows is Cancer? It's hard when they don't share how they are feeling. 

As warm as yesterday was, today was the polar opposite  We wake to 32 degrees and the winds are pretty much gone. The cow pasture across from our road is now a lake, without a single blade of grass showing. The cows have already been relocated to higher ground, something the farmer is always prepared for at this time of the year. We can still make it to town and back without any problems, but the main road to the far side of town is still closed due to flooding and will likely stay that way for the rest of the week. I heard from Mom that Biltmore, where Rhonda and I had just gone to lunch and shopping on Saturday, is now under water. When mother nature decides to take over, there isn't much we can do.  I just pray the business' are not damaged. 

Zack is feeling a little more energetic today, he says it's because he is mostly resting. He has had more company and seems to continue to be in good spirits. I ask him to run a couple of errands for me and he is eager to do so. His side kick, Donald is there as well. I had a rough morning having left my glasses at home, I could barely see the papers in front of me without putting them two arms lengths away. My stomach kept burning and I was so anxious, the slightest little thing could set me off. The last time I remember feeling this way was when I was on prednisone for poison ivy. I finally called the pharmacist and asked him why I feel like I could punch somebodies lights out? He said to stop all medication immediately, I was having an allergic reaction. Feeling better from the diverticulitis flare up, I quickly threw out the medicine and by five o'clock was already feeling less anxious. I heard from Lee on how to work through all of this without antibiotics and am going to try her suggestions. I would much prefer to go the natural way if possible anyway. 

I put in another full day of work. We are going back to the basics (as we did when I was first hired) and though I'm not known for liking change, I am glad we are doing so. It took me most of the day and a large portion of the evening to get everything in place for Monday morning. I don't like to leave without everything being ready for the next work day, as we never know what is going to be and though it hasn't happened , I would rather "be prepared" should I not be able to go into work.  Frank called to see what I wanted for dinner, not being particularly hungry, I just tell him to take care of the clan that has now formed at our house. (two  girls and three boys, all "my" great kids.)

While wrapping up for the evening I get a pre recorded message from the High School. It is a young ladies voice reminding us to purchase the year books (for $65.00 thank you very much!) and cap and gown pictures will be taken next week Friday. It hits me, he is really graduating! He is really going to cross the stage with all his friends! I just can't stop smiling. I am so proud of him and so excited for his future. 

Once I arrived home, Frank is sound asleep on the couch with the remote control tightly gripped in one hand. I'm tempted to take a picture, but know he will kill me (NOT REALLY!!!) if I posted it anywhere. (smile). The two boys are playing video games as Leia watches. The kitchen sink is full of dishes, there's a pot on the stove full of sauce for the spaghetti and sauce splattered all over the place. I ask Zack and his friends who is on kitchen patrol and they tell me they are the ones that cooked dinner, so KP is up to the adults. How can I argue with that? So I quickly clean up the kitchen all the while, Frank is still snoring. (we mustn't wake up to a dirty kitchen now must we?) Zack takes his friends home (yes, all of them!) and returns. He stops in the doorway to the kitchen and says "I think I hurt your feeling earlier and I didn't mean to." He had, but I'm also more sensitive these days, so I just tried to forget it. He have me a big hug and I thanked him for being such a good kid and so caring. He, being typical goofball says "yeah, whatever, get over it!" and.... the moment is gone! 

Tomorrow brings another trip to Asheville for labs and possible (most likely) blood transfusion. My mother in law Linda is going with us, as she and I have an appointment at the VA to go over Big John's paperwork, pick up a plaque for his grave (we still haven't had the burial) and wrap up loose ends. She is fully aware that she may be spending a full day with us and with her typical humor she tells me "I guess I can survive a day with you!" 

On Saturday, I have set aside the day to be with Mom. It has again been a couple of weeks since we have seen each other and long over due. Sunday is the Super Bowl and as we always have a part every year, we decided this year should not be any different. Especially since we won't be in the Hospital. So, we have a pretty cool weekend planned, I will of course share with plenty of photos, (that is when Zack isn't hiding his face).

Tuesday, January 29, 2013

Old memories die hard...

Just when you think you've moved on, old memories are awakened. What started out as an ordinary Monday turned into memory lane and not one I was eager to re live. 

Frank headed out early this morning to start on a new project. Work has been slow, but steady. We are grateful for any work and counting the days to Spring when his monthly maintenance begins again  as well as the larger contracts. He has had a lot of pain in his elbow and I finally convinced him to go and get it checked out. It turns out it is "tennis elbow" and he was given a cortisone shot. I usually am not a fan as that only masks what is really going on, but the doctors are just playing a guessing game right now, and the pain was so bad it would wake him in the middle of the night. Though we haven't seen much relief yet, it may take a couple of days. 

Zack wakes up in good spirits. He feels good and his color is back in his face (something I don't mention to him as he still doesn't like it). He is scheduled to go with Donald (who doesn't drive) to the Cancer Center for labs to determine whether he needs a transfusion. His appointment isn't until 11:30 am, so I let the boys sleep in. Donald has become a regular here. His mother is undergoing heavy chemotherapy for her cancer (she is stage four, but it is too hard for him to talk about so I don't even know what type). No matter how hard I try to get him to open up, he turns everything into a joke (sounds familiar). The boys stop by the office to pick up the gas card and after giving out hugs, head out to Asheville. Not knowing if he needs blood, we agree that Frank and I could meet with them after work and we could bring home his truck as well. Though he would feel much better after a transfusion (if needed), he is too tired from the Benedryl and sitting around all day. 

I, still having sharp pains and feeling worse as the day progress', decided to go to Urgent Care. I had started the morning feeling better, but quickly became worse. I was able to work without any problems which was  a blessing but at lunch quickly went down to get checked out. I walked up to the entrance and sign in. The nice lady took my information and within thirty minutes I was being called in to have my vitals checked. As I walk down the long hall and enter the examination room it hits me! This is where we first brought Zack for the tumor on his leg. THIS is THE room!! I sit and wait, the memories come flooding back. I see the examining table he sat on, the little table attached to the wall where I put my purse. The nurse walks in and takes all my personal information. Within a few minutes the Doctor walks in. She is a blonde with attitude, but that's okay, so am I. Oh my gosh, YOU'RE the doctor that examined Zack!  All these emotions are back, with a vengeance! She looks are me and says "Well, I'm the doctor TODAY!"  Standing by the door, she says "I'm going to give you THE lecture".  "You need a CT scan, you need a colonoscopy! You can't just walk in here and tell me what you have! What if you have, like my mother, a ruptured appendix?" I look at her in horror! "Are you saying that you are sending me for this, could it be my appendix?" "NO, I'll go ahead and give you the antibiotic, but you need to see what is really going on." She listens to my chest and stomach and says, well at least there's not a blockage.  I remind her of who I am. She said "I see too many people to remember your son." Well,  fair enough, "I find it interesting that you want me to have all these tests and yet didn't take an x-ray or anything of my son. Please just know the doctor you referred him to, cut him open without any prior scans!"  I understand what he did, is not your fault, I would just be careful recommending him, and I'm not the only person that has had a bad experience with him.  She looks at me and says "I don't remember the doctor either." I told her that I remember everything very well, my son... who was diagnosed with Ewings Sarcoma, remembers everything too well, but she is not the least bit phased. At this point, I can't get out of there soon enough. 

I leave with plenty of time to grab lunch, my prescriptions and head back to the office. Luckily I can focus on work and let go of that particular walk down memory lane. One thing is sure, I won't be returning there anytime soon. Shortly after lunch Zack calls to tell me he will not be needing a transfusion and he is to return for labs on Thursday (which I promptly changed to Friday, when I can go with him). 

It is now Tuesday. I wanted to go and see Mom, but pretty much knew last night that I wasn't going to make it. Having been through this before, I knew it would take a couple of days for me to start feeling better. Frank, Zack and new employee (and friend to Zack) Austin head out early. Zack doesn't really want to work at first, but tells me later, once he got started he was enjoying himself . A couple of hours into the morning, Zack became really tired and couldn't continue. He tried to push himself, but Frank made him stop and come back home. Frank felt bad for him, as he found Zack crying at one point, frustrated that he can't do what he used to be able to do. We explain that it will all come back, he just needs to heal. 

Zack returned home frustrated and shared how much he was enjoying work, once he stopped being in a bad mood. We had a nice little visit and then he was off to pick up his friend. I spent the day cleaning the house, one room at a time and resting when tired. I was feeling better as the day progressed and didn't want to sit too much as I felt the exercise would help. Zack and Donald leave to pick up an old friend from our "Talley Road" days. Lyndsay the daughter of our then landlady and dear friend. It was nice seeing her as she was catching me up on the current events in her life. I remembered better memories of times when her parents would have Halloween parties, equipped with their own haunted house with Frank as one of the terrors. How cool it was when they brought home two donkey's and Zack couldn't wait to go down to see them. Now, here she stands a Junior in High School! They all grow up!

Zack's energy is low, so after dinner I encourage him to get some rest. He is excited about taking Mom shopping tomorrow afternoon, but I tell him that he doesn't have to go if he doesn't feel well enough. He won't hear of it. He says he will stay in the truck while she shops so he isn't in a large crowd and if he is tired, he will rest in the car and listen to his music. He loves his time with his Meme and neither of us has seen her in a couple of weeks. He also knows if she sees him, she worries less. She always thinks we are hiding something from her. 

As the night progress' Zack comes in and tells me he has a headache. As I look at him he says "I know Mom, I probably need blood!" I tell him to keep me posted and if he does, he may need to go tomorrow or Thursday and not wait. He looks at me and says "if I have to , then I'll go, it's no big deal Mom."  Wow.. thinking of the first day at Urgent Care and how big a deal everything was in the beginning and now, it's routine! Thank God he adapts and has the strength and wisdom.

Sunday, January 27, 2013

short and sweet....

Zack woke up ready to head out to his friends house. He was gone all day and was actually feeling really well. Tomorrow he goes into the Cancer Center for labs to see what his hemoglobin count is. Hopefully it will be a short day and he will be able to return home quickly and enjoy the rest of his day. Donald will be going with him for company and should he need blood, we will then determine if we meet him in Asheville (for one of us to drive him home).

Frank spent the morning fishing and had a great time, though he said he nearly froze. I am still  having pain from the diverticulitis flare up, so I will go at lunch tomorrow to Urgent Care (they were closed today). I did manage to get the laundry done, fixed a delicious, healthy dinner and rested watching my favorite television shows. Hey, it takes a lot more than pain to keep me down.

Everyone enjoyed their day, Zack is in a great mood and feeling well . Donald is hanging out with him tonight, so we are all back home together. What more can I say about our day! YEAH!!!!!

Saturday, January 26, 2013

An order of hot wings, to go please....

The morning starts out frustrating for Zack. After a night of little sleep, mostly due to having to get up to use the bathroom and extreme nausea. He is awakened at 6:30 for vitals check. I guess on the weekend they "try" and let you sleep a little longer. Today we have Melissa, who has taken care of us for a long time now. She knows our routine and pretty much goes with the flow. I am still in pain from diverticulitis, which decided to make its grand entrance Thursday night. I went downstairs to the main floor and talked to the pharmacist. She asked if "I was under a lot of stress." Once I stopped laughing long enough to answer, she gave me some ideas on what to do, but advised strongly, that if I continue in pain, to go to the ER. I am doing everything possible to keep from going to there which, though conveniently is downstairs, is more expensive and not as pleasant to to work with as Urgent Care. 

Knowing we will be going home around 10 pm today, I undo my double mattress bed and place one on the hospital bed (which was removed last night) and the other in the hall. The room already appears larger! Zack is still sleeping, so I am as quiet as possible as I get the room in order. I don't want to pack everything up just yet as we have learned that situations can change in a minute. As I straighten up the room, Melissa comes in to check his blood pressure and temperature, which thank God is normal. All of this was accomplished without waking him up. However, we did need to wake him for his Lovenox shot. He sits up, wipes his eyes, takes the alcohol swab, cleans the area on his stomach, takes the syringe and gives himself the shot. Within minutes he lays back down and is again sound asleep. About thirty minutes later, the Doctor walks in. He looks at Zack saying "I heard he didn't sleep well, can you wake him up, I need to check him out." Coward!!! Ha Ha... I wake up Zack AGAIN!!! This time, he is not so pleasant. Good thing he choose not to use his words. He simply lets the Doctor check the inside of his mouth (they look for blisters, which thankfully has not happened to Zack), checks his heart rate, pulse and again his stomach. I think someone should make up a rap song about the treatment procedures, Hey Eminem where are you? Everything checks out fine and the Doc says we will be discharged late tonight baring no complications. Zack goes to lay down and no dice! He stands up, goes to the rest room and announces "Great! NOW I'm awake!" 

The past couple of days food and drinks just don't taste right. The ONLY thing he enjoys are hot wings. I go to the front desk and ask if there are restrictions (due to the flu warnings) regarding food delivery. We never exchanged names, but she knows us all too well. She says "hot wings for Zack?" I nod and say "yup, it's the only thing he likes right now and if Zack's happy, Mama's happy." She laughs and says "GO FOR IT!". I call Rhonda who would love to go to lunch and  then I order hot wings, cheesy bread and a drink to be delivered to Pediatric Wing. 

The room after packing up!
I see a glimmer of light in Zack's eyes. He is coming back to life, at least for the moment. I receive a text from Amy and Bill, who along with Rhonda have been our constant Hospital visitors. Lawrel was planning on coming for lunch one day, but the flu has hit their office and she wants to make sure she doesn't bring anything, so we agree to meet another time. Having someone come by and see Zack, even if he is not in the best of moods, helps to break up the time. He feels caged in and when he has visitors, he forgets, if even just for a short time, that he is stuck here. The nurses tell us they can visit, which thrills us!

Before heading out to lunch with Rhonda, Zacks lunch arrives. As I walk down the hall, Chris (remember Vin Diesel "almost" look alike) comments, "lunch, hot wings, cool, tell Zack I'll be down there soon to have lunch with him." Zack gets a kick out of his comment and says "well he better hurry, 'cause it's all gonna be gone in a minute." Rhonda calls to say she is on her way, so I go downstairs to meet her. I just need a couple of hours to get out and walk around. I'm still not feeling well, but hoping that walking around with help some. Since Amy and Bill are on their way, I don't feel so bad leaving him, knowing he will have company (which is not Mom or Dad!).

Rhonda made me do it!
Rhonda and I had a great time, she drove so I didn't have to deal with the pain of finding a parking spot. We took our time, about three hours and enjoyed catching up on the past few weeks. We did some bargain shopping a our favorite store (no free advertising, sorry). When we returned Zack was sleeping and finishing up his chemo treatment for the day. Once he woke up he and Rhonda visited for awhile. She was asking him about his future plans for school. He looked like a deer in headlights. I guess he thought she already knew what his plans are, so he shares them with her. Being a former teacher, my sister asks a hundred questions. To each, Zack just shrugs his shoulders. To him, that is saying "I know what my plans are, that's all that matters." She was sharing how much fun Nashville was when she lived there and knows that he is going to love it there. I personally am grateful he is waiting a couple of years. He has a little more healing to do when all of this is done and growing up a bit more wouldn't hurt either. Though it is a college environment and he would live on campus, so if he decides to go next year, we would support him 100%! For now we concentrate on getting past the treatments and a clear bill of health.

Protecting myself 
After Rhonda leaves, I start to feel worse. I decided, poor planning on my part, to go online and see when Urgent Care in Brevard opens on Sunday (tomorrow), well, they are closed. So I am heading downstairs to the Emergency Room in the Hospital. This is not something we want to mess with and I think I have given it plenty of time to clear up on its own. Zack is in the middle of a movie and FB'ing with his friends so he tells me to go on and get done what I must do. After checking in, getting vitals done, blood drawn and waiting for two and a half hours, I politely go to the front desk and tell them I'm checking myself out. I spoke with a woman sitting next to me and she told me she had been there four hours and still was told it would be another hour or two, AND being told there were 120 people waiting to be seen, I decided someone else must need to be seen more than me.

Thank God I was able to call Rhonda during my waiting period and she brought Zack dinner while I was stuck downstairs. When I arrived back at the room she was sitting with Zack, just hanging out watching a movie. She didn't want to leave him alone and didn't want me worrying about him. Even though he stays alone during the day and occasionally when I run out to get lunch, I just felt I was pushing it so close to discharge time. NOTHING stands in the way of our leaving and on time.

Zack and I start to get goofy as the night progresses. As much as I'm ready to get out, Imagine how Zack must feel. His nausea is not as bad tonight, he is on his special medicine which will help as long as he takes it every 12 hours for a day or so. He is trying not to get too excited about seeing his friends tomorrow, he hopes he doesn't end up in bed all day feeling sick, as he had the last time he had chemo. We are both excited about going home, being in our own beds and waking up without being disturbed. We are grateful for the care all the nurses showed us and until next month, wish them all the best. 

Friday, January 25, 2013

Walk a mile in his shoes....updated

"They" say, we should all walk a day in another's  footsteps, so I thought I would share a "typical" day for Zack at the Hospital. 

The day starts out early around 5:30 am.  This is when the nurse comes in and checks their final vitals before shift change at 7 am. They start with Zack's blood pressure, temperature, pulse and heart rate. The blood pressure cuff can get so tight that he feels as if it is cutting off any circulation to his finger tips. When checking for his heart rate he must breath in and out deeply, something they are still trying to teach him to do, you can barely tell he is breathing during this. The first two nights Zack had a low grade fever, so they check it more often. The Doctor advised us that some of the medicine he is on can also mask a fever, so they are monitoring this very closely. We have already been advised there is a possibility that his fever will come back at home once off the medicine and should this happen we will be back at the hospital. His port is accessed and they take a couple of vials of blood, this will be sent downstairs to the lab to check for two separate results: One is the bodies Chemistry results for Sodium, Potassium Chloride, CO2, Anion Gap, Glucose, BUN, Creatinine, calcium, phosphorous, protein, Albumin, Bilirubin, Alkaline Phosphatase, ALT, AST, Osmolality, Megnasium. The other is Hematology Results: which shows his WBC count, RBC, Hemoglobin, Hematocrit, Platelet Count, Nucleated RBC, Neutrophls Absolute, Segmented Neutrophils, Lymphocytes, Monocytes, Eosinophils, Basolphils, Metamyelocytes, Myelocytes, Promyelocytes... (whew.. that's easy for you to say!)  Once this is all completed he is able to go back to sleep, until the next shift change. 

It is now 7 :30 am. The day nurse comes in and checks his urine sample which is also sent to lab, she then changes out the IV fluids. Based on the lab results, the nurse changes the sodium chloride to potassium chloride, because his potassium levels are low. She then leaves as fast as she came. After the initial check, He usually doesn't see anyone until close to 9 am. Most of the time, he simply falls back asleep . Since he asked that all hospital meals be cancelled, we have pre-purchased meals that are kept in a small refrigerator down the hall. He has cream cheese danish, muffins, bananas and grapes to choose from for breakfast. Karen (social worker) told me I should eat the meals, "they are free!" I looked at her and said "oh no they are not!", we both then laughed as she realized what she said. Around 9 am the doctor comes in to share the lab results. They mostly cover the Hemoglobin, and Platelet count with us. These are the two primary concerns as they directly effect the immune system. If the counts are low during hospital stay (as well as at the clinic) they will order blood and / platelets. The doctor does his exam which consists of checking his pulse, heart rate and checks his stomach for bruising, which is where he gives himself his daily shot of lovenox (anti blood clot medication). Heavy bruising could mean low platelet count. The rest of the day is spent with his nurse coming in changing out the fluids, taking more vitals and recording everything into the computer. 

Zack tries to entertain himself with his games on his X-box which can be connected to the television, which is also equipped with DVD player. The games seem to last one day and then boredom sets in. He really never feels fully well enough to stay with one thing for long. He will watch a movie, then take a nap, wake up and play a video game and text. His moods stay about the same, he is fed up with everything and have every right to feel that way.  

"the beeper"
It is now 3 pm. Each day, from the first day, they have "shortened" the time to begin his chemotherapy, so that he can get out Saturday night instead of Sunday. The nurse enters with several bags of fluids. Each is marked with his full name, date of birth and the chemical that are contained. The nurse must dress in full protective gear consisting of goggles, mask, gloves and disposable gown. She scans all of the bags which is then entered directly into the computer. The nurses call button is pushed and she asks for another nurse to come in and do the "time out". As previously explained in an earlier blog, this is when the one nurse reads everything off of the label and the other nurse makes sure the information matches his ID bracelet. They then must compare the bags to the treatment that is listed on a document.  Once the time out is completed, everything is connected to the IV tower and the "beeper" as I like to call it is programmed for the treatment. At times there could be an air bubble, this will cause the machine to beep, warning us of the problem. When this occurs we call for the nurse who then comes in, checks the line and once she removes the air bubble, re sets the program.  Air bubbles are very serious, having an air bubble in the line could cause the air to go into his vein causing a clot. The bags are switched out several times, larger bags are changed for smaller one which are then connected to the saline solution. All of these are run through his port access, into the port and through his entire blood system. It usually takes three to four hours for completion of each treatment. Zack is able to get up, use the bathroom, get drinks or snacks (if he feels up to it), but must take the tower with him. Constantly having this metal contraption following you around a small room, wires connected to the outlet, tubes connected to his chest, this can all get on his nerves rather quickly.

"Infusion complete", is one of the phrases we like to see on the machine. This means another finished day of chemo. Once treatment is done, they must check his blood pressure for one hour, which means the cuff stays on the entire time. Zack has become a pro at this, he takes off the cuff ones the pressure is taken and once the machine starts again, slips it back on. Once in awhile he is not fast enough, so we stop the machine, he puts on the cuff and we restart. When you spend this much time in the hospital, you get to know the equipment. Nausea has now set in with a vengeance. We ask the nurse for Benedryl, which usually knocks him out. It takes her awhile to bring it and once it is injected into his port he immediately is asleep. That is when I grab my moment to head downstairs to grab and early dinner. I decide to also pick him up something while down there, since it is not safe today to go outside (we had an ice storm).

When I return there is another shift change. It is now 7 pm and the nurse from last night is back on tonight. She is very sweet, but I must ask her to do better than last night. I try and understand that they have a full plate with every room full, but sleeping on two mattresses on the floor and having to get up each time the machine beeps to turn it off and then reach over Zack for the call button, gets old quickly. Zack then, wakes each time I do, gets up and goes into the bathroom. He is being given so many bags of fluids, he is never able to sleep through the night. Last night was no exception.

Zack's bandage around the port access is loose, so we ask the nurse to change it. In the past he had a problem with the needle which is inserted (port access) into the port coming out and we wanted to make sure this didn't happen again. They tape over the port access with a clear bandage, which keeps it in place and keeps it clean. When the nurse changes the dressing, she puts on a full face mask, gloves and asks Zack to look away so as not to breath on the access. She explains that even the slightest amount of dirt could cause an infection. The nurse apologizes for last night and promises to take better care tonight. We are very appreciative that she will do her best, that's all we can ask. The baby that was in the room next to us has been moved to another room in order to make room for another oncology patient, her mother, father and baby sibling. The back of the hall is restricted to oncology patients, but with no room left in the hospital they are placing children wherever they can. We were advised by the nurse that there are children in Emergency Rooms waiting for rooms upstairs. Since Zack sleeps on the couch, a nurse comes in and asks if she can give his bed mattress to the family in the next room. She advised us that several of the staff are having to stay in the Hospital, due to the bad weather, and there are no more mattress' for the family members. I gladly help her carry it to the family and offer a couple of bananas while I'm there. Anything to help them feel more comfortable.

I try and tease Zack about trying out the perfect, firm bed, but he is not amused. He is jumpy and wants to get the hell out of here. I think part of it is the Benedryl as he usually doesn't act this way, but at this point it doesn't really matter. We will try and get a good nights sleep, knowing that his fluids will be changed out every hour or so, knowing that he will have to get up to use the bathroom all night, hoping the beeping will be at a minimum and won't keep him up. His vitals will again be checked early in the morning and the (new) baby next door might keep him up crying. Then, we start the day all over again. The difference about tomorrow is, we will be going home later in the evening and KNOWING he will have a good night's sleep in his own bed and wake up to a better week.

First day in Hospital, THE LOOK!!!

Wednesday, January 23, 2013

Hit with a 2 x 4!

Well we made it into the Hospital! All of Zacks counts were high enough, now we just needed to wait for a room to become available. The Cancer Center must first reserve a room for their patients and since his counts were so low last week they weren't sure he would make it in again this week. He always manages to surprise everyone! Angie enters the room and says "well guess what?, you're going in!! Zack is fine with it, he is prepared, he had a great week with his friends and is interested in his video games once again, so he has a plan on how to entertain himself. We already discussed the fact his friends couldn't visit this time due to the flu restrictions. He simply reminds me that they are all working or in school and he will probably be sleeping most of the time anyway. He adapts really well, it doesn't mean he likes any of it, but he has learned to adapt. 

Angie tells us it will be a couple of hours, so she starts him on IV fluids (he previously had his port accessed). I'm guessing the emotions from yesterday wiped me out, as I immediately laid down on the tiny couch and was sound asleep. An hour later, Angie comes in to tell us the room is still not ready. It turns out the hospital is full to capacity with flu patients. The room they had were going to place us in is the smallest on the pediatric floor and the Hospital staff, already quite familiar with Zacks stature, told Angie it would not work out. One of our fellow patients was getting ready to check out so they advised us to go get lunch, take our time and we would be called once it was ready. 

We went to our new favorite hang out TGI Friday, I must say the food is delicious, but for a "girl" trying to stay on Weight Watchers program, "It 'aint easy". Zack and I were reviewing the menu and he was picking out everything marked with "under 750" calories.  Nothing appealed to me! I ended up getting an appetizer which involved three tiny chicken skewers, kind of funny actually, as that was the morning exercise at my WW meeting. We were to create a menu item under 10 points and chicken skewers was part of our menu. What I am realizing, the salt content is so high and my body can feel it. We had a nice relaxing lunch, but "the call" never came, and knowing it wasn't safe to go into large public places, we decided to head over to the Hospital and see what was going on. On our way there, Zack starts to have chills, it didn't subside until awhile later when we were settled into the Hospital. So I didn't think much about it, although I kept stored it for future reference if needed.

As confirmation of what we had already been advised, a large sign is posted at the entrance to the pediatric ward,"Due to flu season, visitors are restricted to immediate family and caregivers only, children under the age of 12 are not permitted!"  We walk through the double automatic doors and as we were greeted by the usual smiling faces,  my stack of containers comes crashing down from the suitcase dolly.  The nurses immediately come up and help us collect our belongings and tell us the cleaning crew were wrapping up and it would be about thirty minutes before our room is ready. We are placed in the children's play room, which is now closed to the children in order to keep toys sterilized.  As we are walking down the hall in the pediatric ward, each door has warnings posted. We usually see children running or walking in the halls while their parents push the IV pole, today the halls are empty. You can hear the babies crying behind closed doors, with caution signs with restrictions sign on each. 

Once our room is ready, we take our time to get settled in. The lamps are plugged in a placed in their strategic spots, I set up the aromatherapy container, the Keurig is set up and ready to go, clothes hang in the closet, food is set up and his special multi -colored blanket is laid across the bed. Zack still insists on sleeping on the couch so once we receive the sheets and blankets , I try and make it as comfortable as possible. Donna comes in and starts him on fluids. We are settled in, I fall into a deep sleep when Rhonda calls. We have agreed to meet for dinner (to celebrate her Birthday). I also need to go to the grocery store to get more supplies for Zack's stay. 

I purchased everything we needed and head to the bakery for fresh breakfast danish (Zack's favorite of late). I ask a woman if the ones out are the freshest as my son is in Hospital and can't leave for food. She assures me they are and starts telling me about her daughter, aged 48 who is being cared for by Hospice. She has a rare blood disorder.  I listen as she shares her grief of loosing a child and try my best to hold it together. This is about HER not ME! Zack is fine, he is doing well, I must keep reminding myself of this whenever I hear others stories. I wish her the best and head out to meet with Rhonda. While waiting at the entrance of the restaurant for Rhonda, I ask about their take out and see if they have hot wings (another of Zacks favorites), of course I mention the Hospital (I don't do this all the time, but at times something tells me I should and I follow my instincts). Our server, as it turns out, has liver cancer and was just recently diagnosed. She tells me that she doesn't have insurance and doesn't like her doctors who will not answer her questions or give her tests she feels she needs.  Rhonda asks for a piece of paper and I write down contact information for the SECU Cancer Center, Hematologists she can call and on the bottom of the note "YOU are in control of your life NOT the Doctors". I also write about Inclusive Healthcare, which just today learned is going away in December, 2013. It seems that January 2014 we will be able to pick our own insurance and pre existing will no longer determine if you can have coverage or not. I will believe it when I see it!

Dinner is finished and I'm anxious to return to Zack. He is thrilled with his hot wings and devours a portion of the meal.  All of a sudden he says he is so hot, I turn the heat down to 66 degrees and he is still sweating. I call the nurse in who checks his temperature. It is 99 degrees F (37.2 Celsius . I then remember and tell her of the chills. She calls the Doctor and is advised to take blood from his port. It wasn't until the next morning (today) that we learn the reasoning for all of this. I felt like I was hit by a 2 x 4 smack dab in the middle of my face! There was a possibility of infection in the port line , should this ever occur there are two ways to handle it. First we would have to bring Zack home and they would show us how to flush out his port with antibiotics. If this didn't work, he would need another surgery to remove and reinsert a new port. Luckily, his fever didn't last long at all, by 2 am he was 98 F (36.6 C) and by 10 am he was 96 F (35.5 C) degrees.  These numbers may seen low to the "normal" person, but someone undergoing chemo and who usually has a low temperature, it was high. 

As the evening winds down, Zack finally manages to fall asleep. It took me a little while to feel like I didn't have to hover and the nurses assured me that they would wake me if anything changed. Zack didn't get much sleep as he was up every few hours, but he woke up in a pretty good mood. I had decided to wait to go to work until the Doctor came in. I wanted to make sure everything came out well with regards to the blood tests. She said there is no sign of infection and his counts were still good after the first day of chemo. They are going to bump up his time by an hour each day so we are able to get out early Saturday evening.

Zack tells me he will be fine, though a part of me feels like he wants me to stay. I give him the option, I know if I need to I can call work and they would be fine with me staying the day. He says "it's up to you Mom." I tell him that he needs to be 100% honest with me and he says he is probably just going to sleep and watch movies. So I decide to head out. Missing one day at work can set me back several hours and I would rather not miss an entire day.  It wasn't until I was in the car that I see a text from my boss and Jess telling me it's okay not to come in. By that time I had already said my goodbyes and felt I needed to go in to the office.  I guess I should have listened to my gut. I wasn't much use to anyone and managed to make things worse at work. At some point during the day two of Zacks friends from his Boy Scout days come by the office. He was involved in Scouts with them since they all first started in 1st grade.  I see them and it takes everything in my being not to cry on the spot. Here are two young, healthy kids, bouncing in with such energy and excitement, going to school, dating, working. I remember back when they all would camp together, have fun together and yes have the occasional fight. Our reality hits me again as one asks if we are having our annual Super Bowl Party? A part of me wants to say "who cares?", but I just look at him and say "if we aren't in Hospital". He just stands there and looks at me as if trying to find words, not wanting to make him uncomfortable, I wink and tell them to take care of themselves and as quickly as they entered they left. 

I ended the day promising to get my shit together and give it my all!  Since Frank was already with Zack tonight and I'm going to stay with him tomorrow until we come home, I decided to stay late and get everything caught up. As usual, when it's quiet I can do the filing, recording and overall clean up of the files. Doc Nancy had already sorted through most of the files and had separate piles ready for me to conquer.  By 8:30 pm I had accomplished what would have taken me all day, while checking in patients and answering the phones.  

I checked in on Zack several times throughout the day and he did very well considering. The nausea is again very bad and taking the usual medicine only helps to a certain degree. The best part of every day is we have a chance to make tomorrow a better one, with new hopes and maybe after a good night sleep, our lives won't seem like it sucks as much as it did today!

Monday, January 21, 2013

"Anger Management"

It's Monday. The weekend went so fast and yet is full of wonderful memories. The day had it's share of ups and downs, but luckily none involved Zack. He hung out with his friends at the house, worked on the old Ford we are trying to sell and managed to find a buyer, he just needs to fix one part, which he is totally capable of doing, so he is excited. 

I had my first counseling session in a couple of months. Jim is a clinical psychologist and acupuncturist.  ( ).What, you thought I "held it all together" on my own? He is great at what he does and offers "homework" to keep me focused on the big picture. It seems that everything goes back to my childhood and being dumped by my biological father, but THAT is for another blog, another time, or perhaps never! It seems ridiculous to me that it would even be an issue since I was adopted by an amazing man, whose last name I still carry proudly, but it seems that most of what I am learning in life always seems to go back to the beginning. Even what we are going through with Zack and his journey. Which friends are standing by us, which ones do we feel "abandoned" by and how not to take anything personally. 

There are so many aspects to this journey, so many things to learn, to live with, to accept and at times to dismiss. It wasn't until this past weekend that I really realized how angry I was / am at the ignorance of some.  Zack has been compared to another young cancer patient in town, with comments like, "He's a guy, he can take it." to "well if they need to, at least they can cut off his leg" or my all time favorite, "he is a big kid," as if size has anything to do with it." His treatments were even compared with flippant disregard to the entire process he must endure. I want to scream, this is not a contest people!! This sucks for everyone involved most especially the kids. Pure ignorance! Luckily I am guided and have tools each day on how to make it through the tough times. I find myself teaching those tools to Zack and yes, even his friends. I am learning that it's okay to be angry, it doesn't mean I'm a bad person or wish anyone harm. It's just part of my survival mode for now, it doesn't mean I'm going to feel this way forever either.

I came home from a long day at work, getting files cleaned up. Zack and his friends brought me dinner earlier, so I was able to go right into packing for tomorrow. We are supposed to go into the Hospital this week and I'm sure even if Zacks counts are low that they will still admit him. They can't skip too many weeks in the schedule. His mood and that of his friends was more somber tonight. Of course "if you ask a stupid question..." Zack just looks at me and says "what I can't be in a pissy mood?" What else would I answer with but "go for it, you have every right."  He stands up, gives me a great big teddy bear hug and wishes me a good nights sleep. Frank offers to help get things ready for tomorrow, but it's already set from last weeks packing. 

I am relieved the day is over, not that I'm wishing tomorrow to be here so soon, but with every night's sleep is another wish for a better tomorrow for my kid. With gratitude to those whom have chosen to stay in our lives, love us no matter what and support us even if it's not "fun" right now ,we have new hope each day for a better tomorrow and perhaps, a little less anger. 

Sunday, January 20, 2013

Who's ordering the Pizza?

   The past two days  the house has been filled with laughter, fun and positive, loving energy. Zack has had non stop visitors and yes even some that have stayed. With him going into the Hospital next week and his friends now back in school or working, they will not have much of a chance to come and see him, so, they come in one by one, with girlfriends, babies (yes li'l man is the youngest of the bunch at just four months), cousins, brothers and sisters. They are all a welcome sight, though we still haven't figured out how to feed this many without at least four large pizza's. They won't eat their vegetables or much else!

Zack and Donald being silly
    Zack is feeling well too. His color is good and with his schoolwork done, no more pressures. It's as if he is another person. Frank even pointed out last night that he always keeps in touch, keeps his curfew (which changes depending on how he is feeling and the weather), has been doing his chores after us just asking once, he will even come out to me and ask if there is anything we need from the store or if we need him to do anything. Donald is equally respectful as are all of Zack's friends. We haven't seen Drake until tonight. He has been doing a lot of catch up school work and that focus is more important. We want him to cross the stage with Zack too. 

    I had a bit of a melt down yesterday morning and immediately called Mom. I was feeling so many emotions that I couldn't separate real fears from imaginary. As always, Mom listened and then helped me pull myself together. Fear can debilitate you and that's not a place I want to stay for long, if at all! Nancy helped point out that when "we" have a bit of "normal", we are so busy living our lives in survival mode that we are lost when we can let our guard down. She was, and usually is, spot on! It wasn't long after that, I pulled out of it and was able to enjoy the rest of the weekend.

 The animals even got in the act this weekend. Anubis was caught drinking tea out of Franks glass (though she was too fast to photograph) and Sidi decided it was time to grab Frank by the pant leg and not let go. Frank was dragging him all over the living room, it was a sight to be seen for sure! I'm sure the animals know when we are down and they in turn are more mellow, when we lighten up, they are ready to entertain and contribute. 

      It is Sunday night and we have a full house yet again. Donald, his girlfriend Tiffany, Drake his girlfriend Kar, Leah and L'il man, Trenton, Chris and Mickey all have managed to fit in Zacks 10 x 12 room! The "boys" are playing video games, the girls flirting with the boys playing the video games and the baby is sleeping in our room, where it is quiet. Drake comes to me and asks if he can spend the night, then Donald, "Mamma, can I stay tonight?" There is no school tomorrow so how could we say no? Tonight, I go to sleep with a sense of peace. The house is clean. laundry done and yes, I did rearrange the living room again (nervous energy), the kids are having a great time and football is on for Frank (my team one today!! go 49ers!) It's has been a good three days!! 

Friday, January 18, 2013

"Please, not another child"

What a beautiful day to wake up to. The sun is shining, the expected snow storm never arrived, with the exception of the rivers flooding it is as if it's a Spring day. We live high up from the river, but one of the two main roads always closes when flooding occurs. Last night Frank advised that we not head out for our early appointment at the Cancer Center. We weren't sure what happened in Asheville (45 minutes away), they were to have more snow and / or black ice. After calling the Center first thing, trying to get out of going, Angie advised that we really did need to come in since his counts were so low on Tuesday. We scheduled it for 10 am. Zack started out the morning in a good mood, but as soon as he found out we still had to go his mood changed dramatically. He has become more withdrawn lately and it is harder to pull things out of him. He sat on the bench at the end of my bed and turned his back to me. I kept asking him what was going on, what he was feeling, he finally turned around as he wiped the tears from his eyes. He finally said he didn't want to go there and also didn't want to go to Hendersonville to Social Security as well. I reminded him that there is no possible way for me to guess what he is feeling, if he doesn't tell me, there isn't a damn thing I can do. (We seem to have this conversation on a weekly basis). His friend Donald stayed again last night and wants to go with us to better understand what Zack is going through. His mother has battled and survived cancer before and is now having treatments for another type of cancer. He doesn't really like to talk about it much and I don't push. Zack and I discuss the day and once I tell him that he doesn't need to be with me for some of the appointments in Hendersonville, his mood gets better.

As we exit the house, Zack picks up one of his Lovenox shots, sticks the needle in his belly and within minutes we are out the door. This, as with other things, has become second nature to him, though he hates taking the shots, since he is no longer having to do two a day, he at least remembers. The three of us pile into the car (Zack 6' 5" and Donald 6") would be my definition of a pile and decide which route to take in order to arrive safely. Much to my joy, the roads were clean and the drive easy. I take the opportunity on the drive over to get to know Donald. He is a very funny young man, who likes to say catch phrases with different accent, British, Country, Spanish. I noticed that he can't sit still for very long and it wasn't until lunch together that he opened up about ADHD. I understand that all too well and it make things clearer for me. He is respectful and at 16 a Senior with one required English credit in order to graduate. He opened up about his childhood and his mothers battle with cancer. Though he doesn't talk about her illness much, you can tell that he is very close to her and has a tremendous amount of respect for her as well. Zack agrees that his mother and I would get along really well. The more I talk with the young man, the more I see into his heart. I am discovering that it takes very special kids to remain friends with Zack through his treatment. It is not fun at all to witness what he is going through, his mood swings can be down right frustrating (even though quite understandable), his limitations with regards to where and when he can go out and his no longer being directly involved with music, art or sports in the school like he had been in all previous years creates a barrier that even those who stand behind are not aware of its presence. "Out of sight, out of mind" can be a brutal reality.

We arrive at the Cancer Center. Zack has chosen to have his labs drawn from his arm instead of accessing his port. In the event they need to give him blood or platelets, he will then have it accessed. As we are kidding around in the exam room, a woman stands in the door, she looks in a panic and says to Angie "I'm sorry, I need to see THIS family," and points to me. Zack immediately recognizes her as a mother of one of his school acquaintances. Angie looks at me confused,  I walk out in the hall and immediately the woman (I won't yet share names) tells me that they only this past Wednesday were told her daughter would require a biopsy to see if she had cancer in her arm. She said that a mutual friend told her to get in touch with me as we were going through the same and I could help her out. She grabbed hold of me and we stood in the hall hugging. I told her not to think the worse, she explained that was going to be hard, as she has already lost her husband and beloved dog to bone cancer. She was quite shaken, trying to hold it together. We just kept holding each other, as if that would take away our pain. I let her know that no matter what the outcome, she was at the perfect place with the perfect people and if they it turns out not to be their expertise, they would send them to the best place. She kept saying, "I was supposed to find you, you can help me, I know it!" The nurses were so glad too, that we connected. They said they were trying to find a way for us to meet, knowing that we were both from Brevard and were excited that we would be here at the same time. It hit me again that if this turns out to be cancer, that would be the third student (two from high and one from middle school) in our small town. We can only hope that this will not be the case for this family, though the mother is convinced it is, having gone through this before. I assured her that I would indeed be available to help in any way I could. I left her the blog address and my phone number as she went into the exam room to meet with the doctor for the first time. 

Not long after, we were escorted to another room to wait for the lab results. Dr. B. came in and met with Zack. Having had many years with pediatric cancer patients at St. Jude's Hospital he knows how to "handle" Zack and his friend, who had a mouth full of chewing tobacco. I asked the doctor to explain to him the reality of chewing tobacco and what can happen. He tries to describe the horrors of mouth cancer and explained to Donald that if he saw Zacks' leg after radiation, imagine that damage in the mouth. He can expect to have sores in his mouth as well as down his throat and possibly in his lungs. Knowing that it isn't really my responsibility to "lecture" another's child, I would hope that someone would do just the same for Zack. It must have struck a nerve because we spent a large part of the ride home talking about the dangers of smoking, chewing tobacco and poor eating habits, (the latter being something I am finally staying on track with). Donald tells me that he has been trying to quite and all I can say is "try your best, you are an amazing young man and we want you to be around and healthy for a very long time."  On our way out we stop to say goodbye to our amazing nurses. One thing I had noticed earlier this morning was Zacks' eyebrows and mustache are starting to grow back. Zack mentioned that his friends have noticed as well. We ask Melanie and she says that is not uncommon for hair to start growing back during treatment and sometimes it falls out again! Zack and I look at each other and just shrug our shoulders, "oh well, it goes, it comes, whatever!!"

"Strike a pose"
Still a bit shaken having met the young mother, I ask the boys if they mind me stopping at a couple of stores, to clear my head. Retail therapy is all I have left, since I'm staying on a weight watchers program. (Usually I would run for an ice cream or candy bar).  After grabbing a quick lunch, the boys and I head out of town. To give you an idea of today's humor, I am driving through a tunnel and Zack announces that they must hold their breath until we arrive on the other side. Music to my ears, quiet, so being "me" I start to drive slower and slower through the tunnel, Zack quickly catches on and tries his hardest not to laugh, once we exit we are all in hysterics. His friend looks at me and says "you're a lot of fun!", what more could a mother want to hear. I drop them off at Target to see if they can find a couple of shirts. I go into a couple of shops and come out with two containers that will hold our Juice Plus capsules and a banner for the office for Valentines Day. Luckily I wasn't in much of a buying mood, just wanted to window shop and process the mornings event. When we finally meet up, the boys are laughing, telling jokes and just having a fantastic time. Donald shows me a couple of pictures he has taken of him and Zack and the goofiness they showed in the store. I previously mentioned that Donald was dating Leia (Drakes sister), well as expected, they are now just very good friends (I promised him I would retract my previous statement). On our way home we stopped by West High in Hendersonville and picked up his current sweetie. It turns out that we had met her last summer while on a camping trip. She is coming back to the house with us and all the kids are going to hang out together until time for her parents to come pick her up. She too is very nice, kind of quiet. Putting on our "parent" hat, Frank and I lay down the law and consequences if rules are not followed. The boys are also told as soon as we get home,they must first clean the kitchen and Zacks room before hanging out with the girlfriend. 

Once the kitchen and room are cleaned we send the kids out for pizza dinner. They settle back playing video games with Zack as Frank and I settle in watching television and catching up on the days events. With all the emotions of the day, I sit back and Thank God that we are home safe with laughter in the house. 

Thursday, January 17, 2013

Breathing easy.............

The past couple of days have been routine. Just the fact that I can even say that is huge! The weather has been detrimental with regards to Franks work, but has also given him a chance to stay home and work on his design for a new project that's coming up in a couple of weeks. Zack and I have a totally new relationship. I am relaxed and when I hear him in his room playing video games, I walk by and smile. Since he is now a graduate, I have less to "nag: about (as he puts it). 

Zack is feeling much better since his double transfusion and platelets. He has had one of his friends, Donald, staying at the house quite a bit of late. Donald is dating (for this week anyway, teenagers!) Drakes sister. He, Zack and Drake get along really well and since Zack downloaded two new video games in preparation for the hospital stay, they have been playing non stop games. He has chores to do as well, but since he just finished his schooling, we decided to give him somewhat of a break. 

He will be working off and on with Frank, when he feels well enough to do so.  One of his dreams was to go to Blue Ridge College this second semester to begin his studies on auto mechanics, but the Doctors say it is just too risky. Especially with the flu epidemic, (even the hospitals now have restrictions in place with regards to visitors). My mother in law has been ill for two weeks with it and doesn't dare go near us, even though she and I have so much to do with regards to my father in laws passing. We are all so much more careful now. We know that one little thing could put Zack in the hospital and we aren't willing to take that chance. Thank God everyone around us has so much respect and is equally protective of him. The other day one of his friends came in and before entering the house said "Hi Mom, I'm not sick!!" It warms my heart to have his friends come over and be with him. I'm not sure where any of us would be without them. We weren't sure what would happen with regards to his friends. They are all young, energetic out for a good time and yet they have the compassion to stand by their friend and ensure that he has fun as much as possible and include him every chance they get. 

Our friends and family are equally compassionate. They know when we are having a hard time and give us love, support and when needed space to breathe.  They also remember that we too need to live our lives and include us when there is a dinner, lunch or special get together's, though we usually beat them to the punch as we love to have people over. 

Most of the time of late, I'm satisfied to come home, see my husband comfortable on the couch engulfed in his favorite show with the dog on one side and the cat on his lap or in the kitchen cooking dinner. Zack is in his room, hanging out with his friends, laughing and cutting up. I go into my sanctuary (our bedroom), pull out the laptop to play my games on  FB , catch up on the days events and blog. It is my time to unwind from the day. When they are ready, Frank and Zack will come and share their day with me as I "hold court" and listen attentively  

For today, things are calm and progress is steady. I do not count how many more days, weeks, months or treatments. I simply enjoy each day as best I can, hope that "today" Zack will feel good, Frank will have work and I can make it through another day without crying. 

Tuesday, January 15, 2013

"Mom, they're just scars"

The car is packed and ready for the hospital week. Drinks, snacks, lunch items, clothing, laptops, X-box and yes, even my Keurig  Hey it's less expense and better for you than all those soft drinks. We arrive at the Cancer Center for our 11:00 am appointment. I make a grand entrance (Don't I always?) and announce to everyone that Zack is now an early graduate. Everyone is congratulating him and Zack is just shrugs his shoulders and says "Thank You.". He, unlike his mother has never really liked a lot of attention. We get settled in and Angie access' Zack's port and takes a sample of blood for his labs. As always, this will determine whether we go into the Hospital or not.

Angie "showing off "the platelets.. 
Dr. B. comes in and checks Zack's vitals. She checks his leg where the tumor was removed and where he later sustained burns from the radiation. I haven't seen it since it was nearly healed (he, being your typical 17 year old is shy).  Even I was surprised at how well it has healed. This poor kid has scars all over his body from surgeries, a few cuts from playing with knives and the radiation. Through everything, he simply says "Mom, they're just scars."  The doctor tells us that she doesn't feel like he will be going to the Hospital today, and the lab results confirm her suspicions   He has a large bruise on his stomach (the bruises so far have been very small) and the doctor says that he is going to need platelets. This is a first for Zack, which surprises everyone. Usually at this stage of the treatments it is more common to have already had platelets. (A platelet count is a test to measure how many platelets you have in your blood. Platelets help the blood clot. They are smaller than red or white blood cells.) He also receives a double blood transfusion. We are given the choice of going into the Hospital later in the week or next week. Since we want Zack to have as much time to heal in between treatments (even if it means extending the treatment completion date). Angie comes and tells us everything is on order. It usually takes an hour or so for everything to come in. 

Even sleeping, he looks "cool"
We move into a more comfortable room with a bed and recliner. Zack gets Benedryl when he has transfusions and this tends to make him fall asleep. He sets up his x-box and settles in to play some video games. I make myself at home in the recliner with my Kindle and phone. It isn't until later that I run downstairs to get my laptop to start the blog and play some Words With Friends. The recliner has a heater and massages as well so I was in Heaven. Before I knew it, Zack was getting his IV fluids and I fell sound asleep. (who wouldn't while being toasty warm and having a massage). I awoke about an hour later and ran downstairs to the car for some snacks and drinks. As the day progressed, the platelets were the first to arrive. They came in a bag just like the blood and fluids. (see picture with Angie). It only took about 20 minutes and they were done, by then the blood arrived. As I watched Zack, his eyes were getting heavier and heavier, as he still played his game, but I could tell he was fighting sleep. Unbeknownst to be (or Frank) he had stayed up until 4:30 am with his friend, playing games. Frank and I had fallen asleep early and since (for once) I never woke up until morning, he wasn't busted. About half way through the day he finally fell asleep. Angie turned out the lights and just let him get rest. I was watching my show on Netflix, so I didn't need any light. I had already made my phone calls. One was to Mission Hospital about my request to review my request for "Charity care" (when they offer discounts based on income). Sue was rather abrupt and said "Yes, I did receive your request to review our denial and I have forwarded the information to my manager," Perfect!!! That's all I ask. Whatever the outcome, at least I tried. Zack continued to sleep until the transfusions were complete, around 6 pm.  We had been at the Center for 7 hours and both of us were ready for some dinner and home. We are instructed to return Friday morning for labs. They want to ensure that he gets blood and platelets, if needed, before the weekend. 

Not ever being one that likes change, I am impressed with how I have learned to roll with the punches. I never once got upset when they told us of the change in plans. I have learned that sometimes there are better "forces" at work and whatever the reason, if we just go with it (within reason of course) life can be easier.  Zack decides he wants to go back to TGI Fridays, so we grab a quick bite there, call Frank and offer to bring him something, but he is eating leftover chili he had made (which was amazing).  By 7:30 pm we are home. Zack received his final high School report card and made all A's (something, he reminds us, that he hasn't accomplished since Middle School). We grabbed the food out of the car, but decided to leave the Hospital bag, at least that way we won't have to re pack. Then again, it may bug me and I may just unpack again anyway. (to reorganize). I will just pretend I am Scarlett O'Hara " Tomorrow, I'll think of some way, after all, tomorrow is another day". 

Monday, January 14, 2013

Get the cap and gown ready...

Zack  came into our room late last night and said "Mom, you don't have to nag me anymore, I just finished and turned in my final paper."

Well today we received confirmation from his English Honors teacher!!! It's always better to have it in writing!!

Hey Guys,

I have received and graded all the work for English IV. Congrats! You have passed the class with a 92. It was a real pleasure working with you guys. I am so impressed that you were able to juggle the things you did and graduate early. Now you can truly focus on your recovery and things you enjoy doing. : )

Please let me know if there is anything else I can do like editing college or admission essays. It would be my pleasure.

Mrs. Owen : )

We are so proud of Zack and his accomplishment. Did it take a lot of nagging along the way? yes!  In the end, it was up to him to finish and he did.  He wants to now focus on his treatment and will be working with Frank when he feels well enough. There are many things he wants to get for his truck and wants to earn the money to do it. 

He will be crossing the stage with his friends, most of whom he has known his entire life. That will happen in June, so hopefully he will be done with his treatment, STILL cancer free and ready for the next phase of his life... going to the community college for two years to study automotive. Then he wants to move to Nashville  TN and go to the Auto Diesel school there (one of the top in the Country).

Tomorrow is the start of Hospital week. We have our bags packed, food purchased (he now loves fresh raw vegetable and dip / Salsa and chips and pumpernickel bread with soft cheese) and car loaded and ready. Zack downloaded two new games for his X-Box and though he doesn't like going into the hospital, this is the first time he doesn't have the weight of school on his mind.

We have been floating all day!!

Sunday, January 13, 2013

Our bond with Mom...........

I spent Friday night and Saturday with Mom (and Bob). To understand how important this is to us both, means understanding our relationship. I had the pleasure of working with my parents from the time I was 18 until 40. They started with a gift shop in the corner of Heritage Square Mall in Hendersonville. This used to be the "it" place to be. The building was formerly a bakery which was divided into several small shops, a restaurant, hair salon, Antique Shop, Craft Shop ,Yarn Shop. When I was a Junior in High School in Brevard, they opened a tiny little Antiques and Art Gallery which displayed my fathers art as well as Antiques we brought back from Europe, where we lived just four years prior. We managed various moves within the building, from small to larger, to two shops, then add in opening the first Antique Mall. 

When Zack was born, we were in Heaven, we wanted a child for several years when we finally got pregnant after three years. He is our miracle baby. I had several issues when pregnant when we thought we had lost him, then when he was born  I needed an emergency C section and ultra sound, but the hospital was short staffed (it was their Sabbath at a Mormon Hospital) and neither was possible. When he finally was delivered, the umbilical chord was wrapped so tightly around his neck that he was deep blue color and not breathing. After our Lamaze instructor / nurse grabbed him, massaging his legs and arms (like you do puppies) he finally gasped for air and after a few hours on a ventilator was "normal". Mom (and Rhonda) were in the delivery room with us and saw the whole thing. That moment the bond formed between Mom (Meme) and Zack. When he was three weeks old, Mom and I were on the road for our first show selling the Father Christmas Figures. When he got older ,Mom stayed in the room with him and they spent the entire long day together playing, singing and bonding even more. Mom, Dad and I fixed two areas that were just for Zack. One upstairs in their studio and the other in the tiny loft above the counter of the Antique shop. He went to work with me every day and was literally raised by the "village". Zack would go upstairs with Mom and Dad, would be picked up to have a cookie with customers who ate at the restaurant and would play on the floor of the hair salon with Nezzie and Pawpaw (an older couple who had been in the mall since the beginning). 

When we closed the shop (it was better for Mom to sell on Ebay, less overhead) Zack was ready to start school. Through the years Mom and I stayed close, talking on the phone all the time, having meals together with her and Dad.  Frank, Zack and I would even go and stay with them in Destin for a week of their month long vacation in the winter. When Dad's Alzheimer's got worse and Bob moved in with them, our bond grew even stronger. (if that's even possible). My mother has survived being a child during WWII in Belgium, a rough first marriage to my "biological" father and the nightmare that was Alzheimer's. She had kidney cancer, which was treated by removing her right kidney (thankfully no chemo or radiation was required), a broken ankle with multiple pins inserted ,a broken back and the loss of her soul mate and love of her life. All of these things didn't compare to the day I had to tell her Zack had cancer. It knocked her off her feet and she is just now getting back up. I never expected her to take it so hard. We also lost our times together.

Every Tuesday for years, Mom and I would get together, have lunch, go shopping, gossip about our favorite shows, talk about the small insignificant stuff or heavy stuff like how much she missed Dad. Like clockwork I would arrive, she would have purse in hand and our day would begin. We would go to Doctors appointment, thrift stores, the bank, pharmacy, she would have her list and we would mark things off one by one all the while laughing, crying, just being each others support. Mom keeps me grounded. When I worry about something, she tells me to be still and listen to my heart, stop being anxious and stop worrying. She always says she worries enough for both of us, hell for ALL of us! Not seeing her every week has taken a toll on the both of us, but we have adjusted and know what time we do have is a very special gift. 

It wasn't until yesterdays visit that we realized how much our time together means. Mom says she goes about her daily routine and then when I call and say I'm coming, she is like a little child getting a treat, she doesn't realize until I am there how much she misses seeing me. I feel exactly the same way. I am a woman, I am strong, I can handle anything that comes my way, but when I see my Mother I KNOW everything is going to be okay. 

It has been a couple of weeks since seeing Mom, so when I asked if I could come on Friday night and we work together Saturday, Mom immediately said "Yes, yes yes, BUT you have to promise NOT to clean my house." "Yeah, okay... NO PROMISES". There is still so much Mom does, but there are some things that I know she can't do and since I LOVE to clean and organize she KNOWS I will do something. We managed to sort through several boxes in her closet area, some of Dads items, papers from years ago, documents she no longer needed. It was a challenge for Mom to say the least. As she looked through papers there would be photos in between of Dad blowing kisses, Her with her first Christmas tree, me with my long pigtails, memories both good and sad. She would cry a couple of times as I would hug her and tell her to let it all out. "There's nothing wrong with a good cry every now and then", I tell her and as she wipes away the tears, I hand her another box. We start to laugh, I am a drill sergeant and we WILL finish this room!!

It is noon and I call to check in on Zack. He is home finishing up his final paper. He is a bit grumpy, but is going to finish the paper this weekend, no if's, and's or but's! Mom tells me that I am one tough Mamma, but she also knows in other areas I'm a sap. He is feeling good, I'm sure the blood transfusion from Friday helped. Frank is out fishing for the day with Matt, so I know I have the entire day to enjoy and relax about when it's time to go home. That is one of the many things I love about our marriage, we give each other space and time for what we enjoy. Since next week is the Hospital week, we want to get out and have some "fun" time. Our couple time is usually at home watching a movie or one of our favorite recorded shows. 

Mom and I head out to lunch and then hit the stores on Main Street and then the thrift stores. We head home around 5 pm and she tries to kick me out the door, but I have a surprise in mind. I vacuum the house and then when in her bedroom I reorganized her clothes, made up her bed, and got the room we had just emptied out back in order. I do the grand reveal and she is so excited! Bob gives me a big hug and Thanks for all the help and company, I give Mom a big hug goodbye and I'm on my way back home. When I arrive home, it is spotless. Frank and Zack worked together to do the dishes, laundry, vacuum and Frank even made the bed. Of course, it's 8:30 pm so I mess it up by crawling in and going to sleep. 

Sunday, Zack finished up his paper late tonight!!! This means that he is now an "Early High School Graduate"! Through everything he has finished his four classes AND Senior paper!! (And "they" said it couldn't be done!") Frank worked on the outside water feature and property taking down the Christmas lights and cleaning up the left over leaves and I worked in the home office sorting through medical bills, papers and preparing the business' quarterly and annual tax documents to bring to our CPA tomorrow. Zack was in really good spirits, he bought two video games for in the hospital, had his friends over for awhile while he was still working on the paper and had a good amount of energy.

It was the perfect weekend! I accomplished so much, but had so much fun doing everything! Frank had a great time fishing with his friend and came home with a ton of pictures to share. Zack is done with High School and anticipating his future in Automotive. We find out the results of all of his tests Tuesday, but I know that everything will come out just fine! 

Friday, January 11, 2013


We begin our day at the Cancer Center., it is full of tests and unfortunately for Zack he can't eat or drink until after the MRI, which is scheduled for Noon. Our first appointment was for labs at 8:30 am. Zack was so tired this morning that he fell asleep in the car and when we arrived at the Center he spread out across their couches and was almost asleep there. Of course, I had to take the photo opportunity. Instead of having his port accessed, he asked for an IV to be put in his arm. The labs came back showing  low hemoglobin so Zack was given one unit of blood. It took three and a half hours for the blood to be delivered and complete the transfusion. The Doctor came in and I just had to ask him why the need for another X-ray. Our concern is, of course, having had so much radiation and previous tests, what is the purpose of yet another one. The doctor explains that it is part of the procedure, but since we are not following a protocol for research, we are not "bound" to following everything. He consults with the other doctors and they tell us we don't really need to do the X-ray, this time. He does explain that all of these tests are to determine whether the cancer has returned and if it indeed does, they will need to be even more aggressive with the treatment. I asked if this does happen and he explained that in some cases it does, but they feel good about Zack's results because nothing has shown up at this point. Music to my ears. I have learned over and over again, that it's okay to question EVERYTHING! 

The statues outside the Reuter Center
The IV line kept getting an occlusion (blockage) so that delayed our departure time. The nurses called the Reuter Center and advised we were going to be a bit late. I hurriedly started to walk down one hallway, around the corner to the elevators.  Zack, lagging behind asks what's the hurry. I'm frustrated, he has had an attitude most of the morning, rolling his eyes, making comments about my good mood and snapping at me every now and then. I look at him and explain that yes, what he is going through really sucks, but there are people waiting for him and we have to be as close to the appointment time as possible.  I add that he is not to take it out on me. It only took a minute for his attitude to change, we started to joke about things. He explained that he was starving, so he came up with the one food he really was craving (buffalo wings) and once I researched where we could get them, he started smiling even more. More problems with occlusion's in his IV caused the nurses to install a new one in his hand, other than that, everything went smoothly. His MRI was completed in a little over an hour. As we exit we stop to look at the statues in front of the building. They already are so beautiful and the adorable part now are the hats and scarfs placed on each creation. There is an organization that makes and donates the hats and scarfs to the children at the Cancer and Reuter Center. Zack came home with one last week and it was beautifully made. 

We leave and go to TGI Friday's. After a delicious lunch we are back on the road for the next appointment, a CT scan at Mission Hospital. We register, go into Radiology and once I ask of a location where we can wait without a lot of people (the Hospital has restrictions due to the flu outbreak, so why take a chance and have Zack in a room full of people). We are escorted to a long hallway with skylights, it is bright and cheerful and quiet. Within minutes a nurse comes and brings us to another room where there are two recliners. She asks us to wait until the machine is ready for him and we settle in. Not long after the nurse comes out and takes Zack into another area. I was able to stay in the comfortable chair, so I was in my happy place. Since the CT was not with contrast dyes, Zack was finished within 20 minutes. He comes out with a big smile and says "we're done, let's get outta here!!" 

On the way home I decide to go to Mom's tonight. I was planning on spending the day with her and Bob tomorrow, but since Zack wanted to go and see his friends and Frank is heading out early to fish, I thought I might as well head over tonight. Though she had a good night's sleep last night, I offered to be backup in the event her throat closes again. I dropped Zack off at home, gave Frank and big hug and kiss and after packing an overnight bag was back on the road again. I arrived at Moms with her waiting at the door, purse on her shoulder and ready for me to take her to grab dinner. We returned with dinner and once finished Mom and I decided to continue our five games of Words with Friends. Mom was at her desk in the dining room and I was at the kitchen table on my laptop, each of playing against each other. After a couple of hours of playing the games, Mom decided it was time to head to bed. I am now resting comfortably on the couch and ready for a fun day with Mom. We don't have definite plans, but have both decided it will be fun, no matter what we do. 

Zack will have the weekend to complete his English paper and once I'm back home will do the quarterly and annual bookkeeping for Franks business. Frank is getting ready to work on another project in a couple of weeks, so he has a lot of planning to do. We are not scheduled to return to the Cancer Center until Tuesday, unless Zack feels he will need a transfusion before then. We are then scheduled to go into the Hospital for the week.