What a Long Strange Year It’s Been…

I am a jumble of emotions today. I am so happy for Kyle as it’s his last day of radiation and so sad I cant be there so see him ring the bell of completion. Tonight, i get to hold him in my arms again and have him home and in a couple more weeks…permanently. I have also never been more grateful for the speed at which a year can fly by. Also, I will never take another day for granted. I am making a list of things to do when he is completely done with all this: Travel, day trips, new experiences, etc. I will enjoy every second I have on this earth with my family from now on as much as I can. I’m sorry it took this type of situation to be such a wake up call, but I have heard it and will make the most of the rest of my days here.
I am also so thankful for the people in my life. My friends, my family and even the strangers that have heard of what we’ve been going through and have offered prayers or sent written support. There are so many to list that have been supportive, kind, generous and loving.
Thank you Doug for being a great father and taking such wonderful care of him. Thank you Kerry, Sherri, Jessica, Elizabeth, Cherie, Christin, TammyLynn, Beckey, Susan, Susan, Sue, Sarah, Maria, Maria(and so many more I haven’t listed) for being there when I was a sobbing mess and needed to be held up or bitch-slapped virtually (guess who that was) and told to stay positive and that he would beat this.
Thank you Mary for talking to me that day and giving me that hope I needed to grasp onto. That assurance I needed to hear. That has kept me grounded this whole time.
Thank you Leo for being so understanding in all this and the loving son and little brother. You always have a hug for me when I was sad and always had a way to make me smile. Thank you for being so encouraging to your brother and helping him when he needed it.
Thank you Sandra for coming up and helping with hospital stays and phone calls. Thank you Roger and Colleen for all you have done too. I love you all.
Thank you to my Ryan for being my best friend and loving husband and always holding me when i collapsed and broke down through all this, all the while reassuring me he would be fine and he was strong and would get through this. Giving me strength when I needed it so desperately. Making me laugh and smile when i felt like i couldn’t. I love you dearly!
Most of all, Thank you Kyle. You have been so strong through all this and so brave. Somehow you always seemed to have a smile even when you felt like utter crap. I will make this all up to you, all that you missed this past year, I promise. Thank you for being so strong and wonderful..even you told me “i’m fine..Ill be fine!” when i was sad and scared.
It’s not all done yet but we only have a few weeks till it’s all done. Thank you God, thank you so much.

Faith in humanity, restored!

In a world where everyone keeps their heads down and minds their own business, the kindness of strangers still leaves me in awe and can make me cry with such happiness and gratitude, it makes me feel better and have hope for this world we live in.

We were out of milk and a few other things. Made a stop to Shoprite to pick things up for home (OMG how could I have spent that much for so few groceries!?!) and as i was loading my sacks of groceries into the trunk, another car pulled up two spaces away. I walked around front of the car with my empty cart and offered it to the two ladies saying it rolled well. “Rolls well, huh? Sure we’ll take it!” they said laughing.  The one woman then complimented me on my hair coloring and asked where I’d gotten it done and what was the inspiration for it?  I told her about Kyle and what he was going through and how he’d chosen a blue wig to wear and that if he wanted me to do the same I’d shave my head and wear a wig too, but he declined it and said he just wanted me to dye my hair and thus is the reason for my colorful do.

The two ladies looked at me with their hands over their mouths. One of them comes to me and gives me a hug and says “We never come to Shoprite. We usually shop other places but decided to come here today and now we know why. We were meant to come here and meet you. We will say prayers for your son and put him on our prayer chain.”  I was so moved by the kindness of these women, I called my husband and told him on the way home about what happened and it made me cry. (as it is again as I am typing this)  Thank you ladies for restoring my faith in humanity. Bless you both!


Exhaustion, Depression and Stress..OH MY!

I opened Facebook this morning and saw a stunning picture of friends in front of glorious scenery on their vacation abroad and while I was so happy for them that they saw such wondrous views and had these fabulous experiences and OH MY GLOB that waterfall was just breathtaking….I burst into tears.  Not really the reaction I was expecting to come from myself. Quite shocking actually. Admittedly, I was envious of them. I adore them completely, I have no ill feelings in even the slightest towards them and their various trips they take I live vicariously through their pictures grinning from ear to ear and vowing I will go there someday, but I am envious.  I am finding a lot of late, that i am envious of what everyone is doing, the lives their living. They are living…..LIVING!! I feel like I am barely surviving each day and each day it is a struggle to do that.

The old saying that goes something along the lines of three steps forward, two steps back (or however it goes) I think is going to be my new mantra. When I feel like I get a handle on things, something trips me up or shoves me back a bit. This morning started with challenges (like waking at 3 am and not getting back to sleep) and try as I might to not let it set my mood for the day, it did.  It started with something as small as my son not brushing his teeth…for several days because he never unpacked his overnight bag from a sleep over. I mean..come on!! Yea, I know..he’s 12 and I should know better. I guess I underestimate my kids in hoping they will do basic hygiene every day without me having to remind them to do it. *smacks forehead* How silly of me!  Lesson learned: 12 year old boys don’t care nor think about these things. (Note to self: Start taping reminder notes to their mirrors and computer screens) I became very angry over this situation. Probably more so than I should have. I yelled. He cringed. The puppy cowered. I stormed out to go to work feeling like worse Mom in the world.

Now, today was to be the first therapy appointments for he and I. Being majorly stressed at all that has happened and is happening in our lives of late, I was very much looking forward to it. I should have known that it wouldn’t be that easy, it never seems to be in my life.  Mind you, i worked for a couple weeks with a case worker through my insurance company to find the right therapist that would fit for both my son and I. They took my insurance as well.  This morning at 8:30, the therapy office called to tell me my son’s insurance was canceled at the end of January and they couldn’t find me in the system. I felt my heart skip and start to beat faster and I think my eye even started to twitch a little.  After a call to the insurance company to verify we were still there and active, which we were, I called the office back. It was then they said they did find us, but, as it turns out, they don’t take the plan type that we have with said insurance company. However, they could set up a private pay price so that I could keep the appointment.  At this point I can now feel my pulse in my neck and temples and the angry tears started brimming in my eyes and I believe the next words I said were “Are you fucking kidding me!?” came out of my mouth and the lady uttered an oh my seemingly shocked to her foundations that I had the audacity to swear. Can someone please tell me why these offices can not check out the insurance eligibility prior to the few hours before the appointment?!  I promptly told her to cancel the appointments as I would not be keeping them since they didn’t take our policy and I certainly don’t have the funds to pay for their “private pay” fee.   Weeks communicating with a case worker named Johanna at our insurance company via email and phone calls and she couldn’t even tell that this place didn’t take my plan type?! Isn’t that this case worker’s job? To confirm these little details before saying Go ahead and make an appointment?  I called the insurance company back yet again and well, she couldn’t answer my call right now and would get back to me.  Right after that, the hospital calls to say I have to come back down (after I just left there yesterday afternoon from being there this whole weekend) so that they can train me on how to run a pump for an NG tube for feedings.  I was there..for four days, and not once could they have shown me this while I was there and they were doing them? After being told earlier that a visiting nurse would come teach me at my home, I am now told I HAVE to come back down and do a 3 hour drive because they do not trust outside visiting nurses. There is now a red haze on the edges of my vision.

I feel utterly beaten down, deflated and broken. Thankfully I am at work alone right now because I sat at my desk here and bawled in complete frustration and anger for quite some time. When that happens, the mind wanders through the strangest things and you reflect on a hundred things that have nothing to do with the insurance company but only further you’re growing depression over the situation and what life has thrown at you. My brain decided to reflect on my missed vacations due to health reasons with my husband last year..then this year with my oldest son’s..not to mention caused us to post pone our wedding and cancel a honeymoon all together. It reminds me of how poorly I feel i am handling my life right now which consists of work, trying to maintain the house and the rotating hospital stays for treatment or pop up fevers and try to raise another child who is also dealing with the stresses of a sibling with a major illness and acting out accordingly. Oh yea..and a puppy who seems to be have an endless amount of poop and always has accidents no matter how many times we take him outside to do his business. He reminds me of one of those play-doh extrusion toys!   In one end and out the other almost immediately! My brain decided to remind me of just how much life I was missing and all the fun I was not having. All the life we are not living.  I feel like the most selfish person in the world right now. I feel like I should be able to push all this aside and be that good strong person and focus entirely on his treatment and be that positive, uplifting supermom i should be. I am not. I feel like a failure on top of the extreme selfishness.

I know..this isn’t forever. I have had multiple people state that to me to try to help me to see the light at the end of the tunnel. FYI: It doesn’t help.  I know that when he is cured and back to his old self this will be something to reflect on as a struggle we got through and move in with our life.  But that time is not here yet. There are still months ahead of us in going through his treatment to reach that end goal. Hard, tough, stressful, painful months. We are barely half way in all this and I pray I can make it all the way through mentally and hell..even physically. I am trying to take it one day at a time so as not to feel overwhelmed, which is a monstrous feet in of itself. I have a feeling I will end up on some type of anxiety/stress medication and almost definitely something for blood pressure before the end of all this. I am fried.

I did warn you at the creation of this blog it wasn’t going to be all rainbows and unicorns and sunflowers, right? Right?!






Frustrations & Complaints (move along if you don’t want to read further)

The night didn’t go so well. The lack of sleep has caused me to be in a foul disposition thus is going to reflect in this post.  The IV machine kept beeping and of course the nurses didn’t hear it so it would wake me up and I would have to go out and let them know that there was an issue with his fluids. This happened at least three times.  Then he had to use the restroom so he needs a hand with that..mainly rolling the IV cart and maneuvering it for him since he is half asleep.  All that started at like 12:30. I started to drift back off and then some weird ass dream woke me up and had my heart pounding. I can’t even recall what it was now. Then, the hunger set in. It was damn near overpowering too. I kept craving sushi in the worse possible way. I seriously debated going down to the cafe that is open 24 hours but all the food is starting to taste the same there and from what the nurses said, they aren’t that well stocked in the wee hours of the morning. So, after a cursory search of the floor to see if there were snacks of any type other than saltines or graham crackers, I went back to bed. The hunger pangs kept me up though and I decided to surf Facebook. Why oh why do all the amazing and scrumptious looking recipe videos come up at that time, when I am soooo hungry?!  It was torture, I tell you. I finally fell back asleep sometime around three is my guess.  But, the damn beeping IV machine woke me at 5:45.

On the complaint front, while the nurses are wonderful as well as the other staff here, the facilities leave quite a bit to be desired. First, they have these vinyl pull out couches and they have to be only slightly more comfortable to sleep on than the floor. Let me tell you, osteoarthritis and this couch do not get along what so ever.  I usually take Advil PM in order to get a good nights sleep, but last night I forgot to. Just as well I suppose considering Kyle needed help.

The bathrooms. We have been in here probably at least ten times now, and in as many different rooms.  Every room (save one) is equipped with these filters over all the faucets including the shower heads.  Our guess is they are the equivalent of Brita filters so the water is clean for patients with compromised immune systems to bath or wash hands without worry of bacteria. Here’s the problem. These filters, they clog up within two showers and then the water flow is a trickle coming out. And that is if there is a descent water pressure, which a lot of times there isn’t.  Nor hot water, or a semblance there of. The current room has a puddle in the base of the tub that has rust in it. Apparently there is also a problem with how they are leveled so they dont drain properly.

This is a children’s hospital. Children of this day and age have electronic devices that rely on internet such as tablets, cell phones, laptops and gaming systems. I have seen them all in various rooms (one teen had the whole X-Box One with Connect set up).  The problem is, when the internet infrastructure was installed, they underestimated the demand on it so it is very laggy. They also linked all the nurses mobile computer stations to be wireless as well so add that to the demand of mobile devices of the patients and families and calling it mediocre would be a kindness.  A simple video chat with loved ones is just about out of the question let alone playing a game or streaming a movie or show.  Thankfully, Kyle has a bag of dvd’s he brings with him and is happy with that.

I see the hospital updating the grounds right outside our window. There use to be a mini golf course and they have chain-link fenced off the are and are dubbing it Phase 2 of the gardens.  The nurse and I both said, wouldn’t the funds have been put to better use for updating the bathrooms/plumbing/computer issues (just to name a few)?  I know i would have budgeted the money for those things other than a new garden.

One thing I do find amusing is there is a ghost in the room. The automatic feed paper towel dispenser just randomly feeds out paper towels without anyone being near it to wave a hand in front of it.  *insert twilight-zone music here*

On an up note (I did say last night I would try) Kyle is in good spirits. My mother is coming to visit with belated presents for him which he is entirely too excited about.  He is smiling a lot and eating cheese its like they are going out of style. Milk and Dr Pepper too.  He has made a request for mini powdered donuts as well.

I feel a nap coming on. I think Ill go give in before company arrives. If you’ve stayed this long dear readers, thanks for listening to my vent. It did help some. I will just be glad when these hospital stays are in our past and he is cured and recovered to his old self again.


“Always Look on the bright side of life”

I will be the first to admit that I do not have the most optimistic outlook or attitude sometimes. Hell, a lot of times.  The last several years in my life have had many ups and downs and it seemed a lot of times, more the downward slope. It tends to make me always see things in a dark light and not in a positive manner.  I am truly working on it but it is hard. Today, is not one of the hard days thankfully.  I woke this morning here at the hospital and decided that Au bon pain-in-my-ass is not what I wanted for breakfast. Everything in that shop smells the same and the smell is starting to disgust me.  I went to the basement cafe to get some breakfast and when I walked in, the atmosphere just lifted my spirits. The speaker system was playing some Latin music that you just couldn’t help but dance to.  I didn’t understand a word of it (even after 5 years of Spanish lessons in school) but you just didn’t need to.  The staff were chattering away and some lightly singing the lyrics to the song.  Some of the staff I have gotten to know by first name basis in the last few months and the one sweet lady named Carmen greeted me. Her big smile and good morning brought a grin to my face as she chatted about how late she was there last night and early she was this morning, all the while dancing to the music playing over head. She asked about Kyle and then commented on my blue hair (yeah..dyed it to match Kyle’s in the back and sides at the bottom) and how it looked “totally fab”.  She really set my mood this morning making the day seem bright and positive. Kyle is doing well. His counts are coming up and he’s put about 8 pounds back on that he’d lost.  His mood was that of my ol’ Kyle who was always giggly and smiley and fun.  We laughed entirely too hard over a video of someone showing some Thomas HO Gauge trains and the eyes on one of the trains were going the opposite ways of what they should be and he just couldn’t stop laughing, which made me laugh even harder and brought me such joy.

Joy…a luxury I haven’t had a chance to experience in some time.

I have to say I was very worried about coming this weekend. Stress has taken its toll and I was worried I wouldn’t be a good Mom to Kyle. The hospital stays are hard on me too emotionally. Its so incredibly difficult to see your child suffering and know you cant do anything more than hold his hand or talk kind soothing words to him while he gets through all this horrific shit that he has to endure to get better. It is extremely hard to not cry in front of your child so they see you as strong and they take your strength and put it into themselves so they too can be just as strong and confident in their ability to get through tough situations.  I am not this strong all the time, or even most of the time. I don’t see myself as a strong person in this. I feel weak actually.  I’m told otherwise, but it doesn’t matter what anyone tells me, its how I feel.  I feel like i should be strong like the other mothers who never seem to cry over this. Who are just determined to get through it and go on to the next step to recover.  As i said at the top, optimism isn’t one of my strong traits. Lots of times being beat down emotionally over the years causes me to spiral. One small bad tiny seed will spiral me down until that seed has bloomed into a forest of negativity and weighty depression. And crying, lots of it.   But, today, there wasn’t any of that.  A good friend came to visit and brought me Pennsic booty that she and another friend picked up for me in their shopping travels.  The company was just lovely too as she regaled me with her adventures in our little medieval Brigadoon.  (sorely miss going..next year, for sure!)

Now, as I finish typing this entry up, the skies are darkening and the stars are beginning to dot the sky. Kyle has settled in for the night and I hear my knitting calling. I’ve spent time virtually with my youngest playing some Warcraft and I’ve chatted it up with my hubby…who i miss so much right now.   Today, I had no pessimistic thoughts.  Well, I cant say that exactly. One tried to get the better of me and take away the happiness I was feeling and i shoved it down swearing at it and grasped the hand of Joy in my head (You know..blue hair, gold glow..all bubbly) and continued on my task.  Today I call it a win. I beat back the blackness that so often takes control of my brain in all this that I am dealing with.

One day at a time. That is the best I can do. Today was a good day and tomorrow I’ll shoot for the same thing.

I call that a win.


In The Beginning…

Cancer. One of the scariest words in the world. You hear it all the time on the news. Great strides in the discoveries of how it “works” and how they are now coming up with ways to cure it. Everyone has had a friend that has had some form of cancer. You try to live a good lifestyle to avoid the big C word. You dont smoke, you dont do drugs, you try to eat healthy-ish and avoid the chain fast food joints when you can.  You tear yourself away from your couch and computer to do more active things like gardening and walking around the neighborhood or swimming at a friends house. You hope and pray it doesn’t happen to you. And then it does, but not to yourself, to one of your children.  Then everything changes.

In the beginning, there is just shock. Utter, bone crushing, world spinning out of control shock. It might as well be true medical shock because there is crying, shaking, nausea, chills, all of it. Then the mind numbing fear that is all encompassing sets in when the doctors said those words: “Your son has cancer”.   You think to yourself..how?!? There is no history of cancer in my family..this can’t be happening and you pray that any second you will wake up from this awful nightmare and find that he’s sleeping quietly in the bedroom next to yours and you just ate something that was unsettling for dinner that night.

No. It’s not a nightmare. You are very awake and this is very, very scarily real. You are really sitting on that ugly flowered couch in the lounge area of the hospital in front of two doctors with the father of your child sitting on your one side and your fiance on the other side holding your hand as they tell you what kind of cancer it is and how to treat it. You dont hear a lot of what they are saying because you are crying and you keep hearing the booming statement ring through your head over and over and its like a pounding pulse that drowns everything everything else out. The outside world is just a distance white noise while your mind wraps around the last statement you heard clearly before the shock set in.

Then you cry more, and it seems like it will never stop.  You sob so hard, so much that you become so exhausted that you yawn in the midsts of sobbing and you suddenly feel like that 7 year old child when you fell off the monkey bars and broke your wrist and you cried that exact same way from the pain.  You start running all the things through your head about how this is your fault. You flash back to being pregnant and wondering if the foods you ate or drank were the contributing factor to this.  Was it the infertility drugs you took in order to get pregnant with him. Did you feed him too many foods with artificial coloring while he was growing up. Was it any of the medicines that you gave him from over the counter companies. What did i do to cause this to happen to my son??!!

Nothing, the doctors say. This is a “fluke”. Its a gene that “didnt turn off” as this happens only in kids and young adults. This truly had nothing to do with anything you did. It’s not your fault. But you really don’t believe them. You’re the mother. You grew him inside you. You gave him life. You nurtured him for nine months through what you ate, drank, breathed in, took internally. Somehow, no matter what they say, there is that little tiny speck of a voice in the back of your thoughts that says it had to be something you did.  In the end, it does not matter because, he has cancer and now it has to be treated. So, you cry some more.

Then a new panic sets in that grips your heart with such pain and terror that you start shaking and you can barely get breathe and while you have to ask the doctor at the same time you are deathly afraid to because your brain can’t possibly handle more bad news. You summon the will and breath from some cavernous area within yourself and between choked sobs you as: Will this happen to your other son?

No, the doctors say. What he has is rare and it is treatable, they say.  But, in your head you are now flashing back to any small or minute complaints your other child may have made that make you fear a similar fate and you vow to take seriously any complaint that they bring to you.  And then, some how, you cry some more, partially from relief by what the doctors said about your other son but mostly from the original fear resetting back in and you wonder how it is possible to cry so much and wonder if there is ever an “empty” point to the supply of tears your body has.

Cancer. Its a word that changes absolutely everything in your life. Things you didnt even know to think about are now things you have to keep in the forefront of your thoughts. You erase all plans that you had for the semi-distant future like weekend trips, vacations, your honeymoon. Hell, you even postpone your marriage so that its a more convenient date to happen in-between treatment times so your son can be there to walk you down the aisle.  The things you use to care so deeply about..social groups, hobbies, goals, etc…are much less a priority to you now and don’t matter nearly as much since this has come about.  It changes the way you think about life.  It changes what you think about in life. Things that worried about before are no longer a concern and you question why you made such a big deal over it to begin with. Your world becomes infinitely smaller and encompasses the things that are most important to you now.  The things that truly matter to you become blatantly obvious: your husband, your children, your family and the happiness you can have with them.  Your friends, the ones that have not faded into the shadows after they heard about the cancer diagnosis…. you are truly grateful for those that have stuck around and have been supportive in one fashion or another like taking your other son to scouts or soccer practice or a sleep over so he has some fun as well. Or just pinging you to check up on you. You appreciate all the little things and its little things like that mean the world.

Finding ways to cope with this are difficult because, guess what, cancer is difficult and when you have never dealt with it before, you don’t know how to cope with it.  Also, your time is limited because its about work, treatments schedules, your home, long drives to and from said treatments, ensuring a happy lifestyle for your other child, etc. Coping mechanisms are hard to come by (besides crying and as stated, tears are abundant) and sometimes..you cope by losing it…on a nurse while in the hospital. (Thankfully, the nurse was very understanding when apologized to the next time she came around and all was forgiven and hugs exchanged). Also, talking sharply to or using the “tough love” approach to/at someone who is dealing with cancer is not the best way to talk to most of them. It tends to set off the temper, so as a suggestion, use the kid gloves approach to be safe until you know how they are handling the whole situation. For the record, therapists are being sought, but like anything else, its a process. Suggestions for a writing a blog were made, thus the creation of this one.

I will say now that by no means will this blog ever be anything but a way to express all-the-things that are going on during this whole process…but perhaps it will continue on after he is cured (AND DAMN IT HE WILL BE!!). I can’t promise daily entries but I can promise I will not mince words. I can’t promise not to swear. I will promise to rant, rave, bitch and moan about all of it and talk about all the feelings. I will write about happy times too and things that made me laugh. I will promise to express how horrible it makes me feel to see my son sick over the poisons that are being put into him in order to make him better. I will complain and be depressed at times, about all the said changes.   If you can’t handle this, don’t read it.  Its taken me over 90 minutes to write all this (yes there were tears at some points) and it took days to actually sit down and write this beginning entry.  Its not easy. Entries will follow.  With that I leave you with this statement:

Fuck you cancer. You will not win.