Follow the yellow brick road

So I woke up around 5am after a restless sleep, but I didn't wake up like I usually do, which is thinking. I usually wake up already in thought and lay here thinking about any random thing that pops in my head, good, bad, funny, sad, there really is no specific thing that keeps me awake most nights. This morning was different, I woke up crying, now I am human, I do cry, I tear occasionally, mostly in the shower so no one really knows. At church I used to cry a lot until God took away those tears and put his arms around me. When I cry it could just be a flow of tears, a few tears or a mild emotional cry and complain to Michael about what ever is "making" me cry. This was different though, this was, as my friend Mo would put it "a snot cry" this was truly an emotional burst of feeling, stress, fear and sadness that my inner self could no longer carry, It lasted for over an hour, my crying usually last a couple minutes or at worst a full shower.

I have not blogged in some time because I usually make someone mad or hurt their feelings even though it really isn't about them it is about me having an outlet for my feelings, I am writer that is how we process feelings. I share them because my life has to mean something, the things I have been through has to mean something to someone other than me, I fantasize about my experiences helping someone else cope, learn or simply not feel as alone as I often do. So in short, who ever takes this personal, IT IS NOT ABOUT YOU! I am going to get personal as usual, I am not asking for anyone to DO anything, I don't want people to FEEL bad for me. As for what I do want out of this is to feel a little better and maybe have a few people UNDERSTAND me.

Not sure where to start and get this out as quick as possible because I must get ready to take the kids to the "How to festival" at the Library, going to be good fun even if it is raining and I can't feed them lunch lol.

Most of you know things have been hard since Mike got sick, not just financially but emotionally. The family has come out ok, the kids are better adjusted then they should be in my opinion because they didn't only have to deal with cancer but crazy selfish people who made a choice to make our lives more stressful and difficult, but that is a few blogs back, back to present day  ;)

We have made it out alive so to speak, but there has been an OZ here, a person behind the curtain sacrificing and struggling, being afraid all the time and knowing how importation her job is, someone who gets things done, bills paid, kids listened to and emotionally taken care of, husband medicated, doctored up and kept healthy. There is a person who makes it all seem easy, that person I am sure you know is me. I am again not wanting pity or it to sound like I am complaining, just simply admitting it because this plays a role in  why I woke up "snot crying" this morning.

Lately things have seemed extra difficult, I have learned to trust god, for the most part, we struggle but we seem to get by, but some weeks, months, days I guess I kinda of wait for God to run out, now wait, don't take that wrong, I know my God won't give up on me or abandon me, but in my life experience before I found my relationship with god has been that you can't trust things or people because they typically don't care as much as you need them to, sometime this is because they just don't care and sometimes it is because they don't know how. Again not talking about anyone specific so please don't freak out and start sending me messages saying I was being mean to you or someone else when I said that, if you feel guilty or some kind of way, well that is not me talking but I will help you work it out if you need an ear. Point being is I guess I am still learning to trust GOD fully and sometimes that makes me feel like a bad person or not a true believer.

Recently someone else that I care deeply about has gotten sick, cancer has struck again, I am not going to blog about that, but that again left me feeling helpless and scared in many ways. Also this year my family lost my husbands grandmother to cancer and a friend of mine recently lost her battle with cancer. These are all difficult and added to my feelings and fears I think, even though I don't really talk about it.

Ok, so to the point because I must go shower and get ready to take these kids to learn how to do stuff. Well I have been dealing with some things myself but only because I have too, I prefer the ignore it, it will go away method when it comes to myself. I can't ignore this.

Some know the extent of the pain I have been dealing with for the last few years, but most don't, most know I have had some pain but most don't realize it has become such a large part of my life as well as other symptoms. Due to necessity, necessity being it affecting my job, I have had to start to seek answers to the multitude of symptoms I have been having. I was thinking they were all separate issues that I needed to address. Surprise I was wrong! During this need to get better journey I started with the pain because it was affecting my everyday life and ability to work. After an exam by a couple doctors and and MRI I have been diagnosed with Cervical spinal stenosis which was explained to me as a narrowing of the spinal canal, not operable and I will need pain management to help me and I don't know what that will consist of at this time because I have rescheduled the appointment twice due to being broke. It is what it is folks, having to choose between going to the doctor or buying food sucks, especially when you work 10 to 12 hours a day and pay 650 dollars a month for health insurance, but hey that is life. I thought ok, I will do some physical therapy and maybe take some meds and it will be ok. Well I decided to call and talk to the doctor because I still have all these other symptoms and I honestly wanted to find out if pain management was really necessary as my doctor is willing to write my pain meds every month (should have been my first clue these days) and I still don't know how I will afford the visits or what ever therapy they will do. Yep this is when it got real, the talk with the doctor and google of course.

Yes I have cervical spinal stenosis, something that you typically don't get until after the age of 50 and my symptoms started over 2 years before I seeked help because I was taking care of Mike, this meant I didn't have time for me and I thought my discomfort in my body was because I was pushing my self so hard to care for him and I was pushing my body so hard to care for the family. I figured I hurt because I lifted him, helped him and I was doing everything alone such as going to the store, cleaning, working, and cleaning was no easy task with a neutropedic husband in the house that could not tolerate germs because it could kill him. Ok so back to the point, I don't JUST have cervical spinal stenosis, I have Cervical spinal stenois and it is bad, it has already gotten to the point where my spinal cord is being compromised and thus causing the pain, it is bad guys. All of my current problems, well except my anxiety lol seem to be related to this one issue. I have been having trouble controlling my bladder, I have been running in to things a lot, even got my eyes rechecked, I trip over my own feet all the time, not just sometimes, I do it many times a day. I bump in to cubicles at work with my right arm, I am off balance a lot. I have extreme pain when I stand or walk for very long at all, I had passed this off solely to my weight. I have major muscle weakness in my arms and legs, it is very bad in my right arm, doctor said that that the reason my right arm is the worst is because I had injured it when we were moving from Raven to Shasta and it caused the symptoms to progress quicker on that arm. I could in reality with out help or maybe with, lose the use of my arms or even my legs. I working hard to do my part, trying to increase my exercise and movement and lose weight, but the rest is in the hands of doctors that I can't afford. The pain and muscle weakness scare me the most, some of the other stuff is embarrassing but not as scary to me. All of these things from my bladder to my balance are because of the spinal cord being compromised.

So why did I wake up snot crying, well because I feel alone, that is part of it, but mostly because I am scared, not for my health but for my family, I am the she-ra of this operation, if I fall we all do. Though we struggle often to buy healthy food (meaning food that is healthy for our bodies like not from a box) we eat, though we don't usually have money fun, we find ways to play, free events like the one I am running a risk of being late for today eeek, or we splurge and sacrifice food or gas to do something fun. We always pay our rent and car payment, though some months I wonder how. The point is we do it, BY THE GRACE OF GOD AND I KNOW THAT IS NO ONE BUT HIM, WE MAKE IT! However how do I chose between making it and taking care of me, because this is like the chicken and egg! If I don't take care of me I can't take care of us, but if I take care of me I can't take care of us. I am not asking for money or sympathy, there are people who need those things more than me, but I do need you all PRAY that I figure it out, but more IMPORTANTLY  PRAY that I can learn how to trust, trust my GOD to take care of me and the people that need me.

If I was a WIZARD

Eyes filled with tears, sitting across the kitchen table in his striped button up shirt and trademark fedora "I wish I had magic powers and could shoot magic in to daddy and make him all better, but I know that can't happen" these were the words of my 12 year old son as he starts to talk to me about his dads illness this evening. He tells me how he don't understand how the medications are making his dad so sick and that he thought medicine was supposed to make you better. He goes on to tell me that he had a bad dream and is afraid that it will be real "I dreamed that dad was getting chemo and he just passed out on the floor and died". His eyes welled up with tears as he expressed to me the weight of the fears he is carrying. "I see dad so sick a lot and I am afraid he will die, I don't want my dad to die" He tells me that he is scared his dad will get hurt because he needs a wheel chair. "I have seen dad fall down". He expresses that he loves his daddy and he don't want to go have fun if his dad can't fun with him. He misses the days when they could wrestle and go bowling. This just turned 12 year old little man who has had to endure more than most adults asks me if he can get a job and help me take care of dad, he tells me that he is afraid that if President Obama don't get re-elected that his dad won't have the insurance he needs and he wants to help me pay for his dads medications. I am heart broken that they will not have a good Christmas this year because I can not give them what I would like and he is worried about his dad not having medication and dying. Talk about perspective!

Below are pictures that Ethan drew for me in his new picture journal one is of how he see's cancer, it is the awareness ribbon draw as a devil and the second is of his dream that he had.

WHAT CANCER LOOKS LIKE TO ETHAN

ETHAN'S DREAM

Meredith sits puffed up at the table, joining the conversation nearing the end, I asked her if she had anything she would like to talk to about. She tells me NO! in a very stern manor, but with hurt behind it. I didn't want to push her, but I did tell her that it was ok if she wanted to talk and tell us how she was feeling or if she was carrying any fears. As she fights back fears she crosses her arms as to get her point across and tells me that she does not want to talk about it.

Once the conversation is over, hugs have been given, tears have been wiped and explanations to questions have been answered to try and ease the minds of the little people who know and carry so much despite the efforts to try to keep the fears and worry from them. I have them go take their showers and prepare for bed, this is when Ethan drew his pictures when he was in bed. Meredith comes in here and says "mom I need to tell you something, but I don't want Ethan to hear me" We secure the perimeter and assure he can't hear and she says to me "I have known since you told me that dad cancer that he could get another cancer and he could die" I just looked at her, not sure what answer she was wanting from me and waiting to see if there was more she needed to add. she then prompting me to confirm her statement said "well I am right aren't I" I explained to her that yes it could happen but if we spent our days worrying about all the things that could happen then we would miss all the good things that are happening. She told me that she guessed I was right, but how can she be happy when things are so scary. I told her that we just have to work at it together every day and make lots of good memories to last us a life time and that I believed that we would have a life time to make those memories. She gave me a big hug and went to bed.

I am not sure why these conversations came up this evening, I think maybe because we went to Gilda's and some emotions came up and also Michael was gone to the movies tonight instead of with us at Gilda's and when we got home all those emotions were there in a house with out dad and they felt like it was a good time to talk to me and for dad not to hear them. It is hard for the kids to open up for the same reasons it is for us adults to open up. If we speak it than it may just be real, if we admit our fears they could come true.

It has been a hard week, I won't deny that, but we have tried to carry that burden ourselves, the kids even spent the weekend with my mother so we could have the time we needed to get the emotions of the new worries we have. By the time we got home from Gilda's tonight I felt drained, not from Gilda's but the from the accumulation of the week, then talking about it, knowing I have to go back to work tomorrow when I am not sure I am want to face people or answer any more questions, Meredith throwing a fit in the car and acting out or reacting to feelings. I didn't think I had anything left in me to give until my kids needed me and at that moment I could have went all night comforting them, listening to them and doing everything in my power to make it better.

As I finish this entry Michael is in Ethan's room talking to him, When Michael got home I didn't tell Michael the conversation that I had with Ethan, I just told him that he needed to put on the dad hat and go give his son hug, I hear tears and I love you coming from both of my men and I hear comfort and encouragement from dad for Ethan not to hold in his feelings. I hear him explaining why his body is weak and hear a dad telling his son that he is not leaving him willingly, not in those words, but the point was there.

Now he is off to Meredith's room to tuck her in and tell her good night! She is already asleep!

No matter my fears or my struggles the most unfair is those of my babies who just want to feel safe again. 

Back in a flash: The stories go on



Making Memories at home <3

It is almost 3 in the morning and I should be in bed next Michael sleeping, but I am not evidently so here we go. I am not even sure what I am writing about or what I want to say. I know I missed my blog, I have missed having this therapy for me and should have not let the fear of others interpretation or their issues deter me from what I love and what helps me so I have decided to start again. This blog was started when Michael got sick, but I had been wanting to do it long before and just never did. With that being said this blog is not just about cancer though most of the entries are about that very subject. Most of all I love to write and it does me good emotionally and mentally and that in turn helps me physically, so it is kinds like going to the doctor only I don't get a bill!          

 

One thing that is on my mind lately is my mother and no grandma you don't have stop reading at this point or call me to tell me I was mean! My mom and I have had a rocky relationship to say to the least, I had a lot of hurt from growing up and I struggled with wanting a relationship with her that just was not there and I was angry!!! At 31, I mean 26 ;) years old I can finally say I am no longer angry at her or hurt. I love my mom so much and I wasted so many years guarding my self from her that I didn't allow our relationship to grow, I can now take that blame on my self when I could not before. I was unable to leave the past behind where it should have stayed, I am a mom of 2 amazing children and I know that I am not perfect, I hope that I am better than my mother and I don't say that to hurt her, but that is the purpose right, for us to be better parents then ours and I hope that my kids are better parents than I am (though that is a tall glass to fill) HA! Just kidding about that last part. In a family where there are unhealthy cycles the only way to change the generations to come is to break the cycles and I feel like I have put a good dent in that, but there is still work to be done and I have faith that my kids will continue the healing and change of our family cycle. Over the last 2 years that Michael has been sick, I have been dealing with a lot and one of those things was trying to figure out my relationship with my mom, I have blogged about it before and got a lot of heat for it, nothing I said was untrue and it was how I feel so I am not sorry for it, but I am sorry if it hurt her, when I started that entry I was angry at her, but I was also trying to work through the things that I was angry at so I could move past them, some people don't get that because they are not me and don't process and heal like I do. I have arrived though and I can say that my mom is more valuable to me then I ever knew. She has done so much for me and my family in last 2 years, I can't even put in to words, she has helped me financially, she was the first one to get a prescription I couldn't afford or put gas in my car even though she struggles so much her self. She has helped out with my kids, been there when I needed a sitter, when I needed a break and when I wanted to choke them lol. My mom was the best mom she knew how to be and I can not only accept that, but appreciate it. I don't tell her enough how much having her means to me, I want to, but I am not good at telling, I am better at writing so I hope she reads this!! Mom thank you for everything! I realized last week when some major issues with Michael's health came up because I was able to accept my part in our broken relationship in turn our relationship has changed and grew. I have never been one to go either of my parents to talk about serious things like fear or life or asked for advice. There are reasons for that, but they are no longer important. When Michal's medical issues came up last week I did something I have never done, I drove to my moms house and I talked to her, I cried, asked her for advice. Now she is still mom so some of it was frustrating lol, but it was good. I felt like I had a mom which is something I always had, but wasn't able to accept. I never thought the first place I would go with something that heavy was my mom, but it was not a choice or even a thought of who do I talk to I just drove there and sat down and started talking. My mom and I think this is natural for a parent and I can appreciate this now because I am one, but she wants to fix things. I sometimes struggle talking to her now not because of anger and hurt but because I don't want to Burden her and I don't want her to think she needs to fix things or I want something from her just because I talk to her. I am still working on that with her, but since she is my mom I don't think that will change and that is ok. I think I am and will be the same with my kids, when they have a need or a hurt or a fear I will always want to fix it. Anyways I hope this came across the way I wanted it to, positive and an expression of my appreciation for the growth in my relationship with my mother and also me taking responsibility for my part of the break in our relationship. We call her the crazy lady, because she is crazy, but in a good way! I love ya Mommy Dearest!

 

I know some of you are wondering about what it was I talked to my mom about, well none ya business! Ok that was harsh and said out the selfish kindness of my heart. When we have the answers and we are ready to share and know what to share we will. There is unknowns and will be for always, but the tests will determine how we move forward, some decisions have been made some still have to be made and I have said it in Michael's group. I am hoping for the best and preparing for the worst and I know that most of the stress will be for no good reason other than life sucks that way sometimes. I will leave that issue there for know and hope the 3 of you who actually read this blog understand lol.

 

There is some other things I would like to share if you have not quit reading yet, I often go on and on and lose 2 out of 3 of my readers before I get to an end, but this is for me and I share it because I like to share my writing and I hope that it may benefit someone some day who struggles with life, let me be the lab rat of life and how not to do things, I am honored to be a tab bit nuts in order to improve your lives, umm yeah not really but why not!

 

The last year man, it has been a ride, so many changes, but good changes for the most part. Even though they have been good changes don't mean they have been easy. We have grown so much as a family and are really becoming an amazing family, there was time that I thought things were just going to fall apart and it was going to be all my fault. Some days I still feel that way, but that is natural being the control freak of a anxiety ridden insomniac that is me! Much to my surprise however we have not fallen apart. My kids are in a better place emotionally then they have been in years, there is still work to be done but the difference is amazing to me. They are in regular consistent therapy that works good because it is family therapy, but in a unique way, the kids have their therapy, Mike and I have ours and it all works out together, some times we work together as a family, sometimes Mike and I work on things, most of the time the kids work on things and it all intertwines and is working well. Therapy has helped a lot, but the bond we have is where it all really comes from. We have bent, but not broken!!! There is people who have tried to break us and lord know cancer has tried but we are unbreakable, I have said before that we are unbreakable but I am not sure I believed it. I do now, I have seen it unfold over the last few years in to something amazing and I know as we continue to grow and bend we will get stronger. I enjoy my family so much, even the cleaning up after them, running around, back talking, duct tape and Velcro part of them, all of them Michael included. Well maybe not the cleaning up part because I think now that he has settled nicely in to his house wife role he picks up after me more than I pick up after him lol. I mean I do the cleaning because no one can clean to calm my insane anxiety, but he does a good job at keeping things up around here, I don't think he does it because wants to, but because he is afraid of the anxiety beast, I need to give her a name, I am open to suggestions! We rock harder then Mick Jagger in leather pants and often smell like Jagger in leather pants. 

 

The move was hard at first on the kids and I, Michael, I don't think that part was ever hard for him except the packing and unpacking, he does not feel the emotional ties to the old house as the kids and I did. I am not sure why, I can only speculate, but I think leaving there made him feel more in control of his own life and when he left he was not leaving good memories because they had been tainted with some harsh reality that he had to face. Meredith and Ethan adjusted well and fast, there was still some sentimental moments when it was hard for them to accept leaving the memories, but once they realized the memories was in them it was easier, they had a lot of fear there and the last year we were there was not filled with good memories. It has gotten to a point now where they have asked us not take them to the old house, we still have to check mail and check on the place since the bank is taking their sweet time taking the damn thing, but we honor their wishes and don't go when they are with us. I am not elaborating on a lot of things on this topic because it is just not worth the stress to elaborate if you are close to us then you know, if you are not then well you don't really need to. The kids have made a lot of friends at their new home and enjoy playing and making memories. Meredith will tell me all the time about the memories she is making, Ethan he just loves having boys to play with who accept him. They both have a best friend in the neighborhood and ironically enough it is the same kid, he has become part of our family is many ways. We have neighbors we like that are friendly and good to our kids, we lived in Lynnview for like 8 years and never had that. The peeps next to us are wonderful and caring and fun! For me, it was hard at first, I didn't want to move, I had to hide that from the kids and even Michael. I expressed to Michael how hard it was for me and he never really got it, but I couldn't be emotional about it I had to just be a solider. For me though it was where I had raised my kids to this point, where Meredith learned to walk and talk and color on the walls, where Ethan learned to ride a bike and broke the window after sneaking the baseball out of his closet. It was where we had colored all our Easter eggs and built jabba the snow blob. It was where stories were read and movies were watched, it was where pumpkins were carved and firsts happened. It was where they both started their first day of school, all of this was true, but I truly feel more at home here in our little rental. I feel safer and happier and more secure. Michael and I have a heavy weight lifted off of us and that has made a difference. And just as I taught the kids, all those memories are in me not at that house and now that it has been almost a year we have made some new amazing memories and we have laughed a lot more. And having a hallway that is tile instead of carpet, ha! even the cat has made some new memories there, drop a Q tip and watch her go! She will take of running after god knows what some times and just crash in to Meredith's room lol.

 

Meredith really likes her new school, she has really grown in to her own person there, she is on student council, just last week she won the story book pumpkin decorating contest and an essay contest. She has made new friends and has said that going to school where people didn't know her history with cancer has helped her be more than cancer, she shares when she wants, but it is no longer her whole identity at school like it was last year. She is in the advanced program and is on honor roll for the first report card, umm and I still owe her the 20 bucks for that lol. Meredith has always struggled with self confidence, but we can see her growing in to her own skin, she is more confident and out going and doesn't any longer feel like she has to be in a box that someone put her in or has to be who someone else expects her to be. We are still working on body image issues from years of being made to feel that she was to fat or not the beautiful girl she is, but we are making progress on that and it will come in time.  Michael and I never put her in that box and now that we are allowed to be her parents she is able to grow in to herself and I love who she is and who she is becoming, she told me in therapy a couple months ago that she wishes she could be more like me because she loves how accepting and tolerant I am. She don't have pressure or feel like she needs to be like me, but she has taken some of my views and passions on as her own and I love that she has. She is her own little advocate for equality even if she pronounces it as equal tea lol. She is a passionate little girl and I know she will do great things in this world and I think that the changes we have made in our lives and the obstacles we have over come have given her the freedom to own that person she is becoming!

 

Ethan, my little dancing man, he likes parts of his new school but is not sold on middle school! This change was going to happen if we moved or not, but he is adjusting! I don't care for his teacher and am going to look in to getting him moved on Monday, but besides that he is also making friends at school, he has had to contend with some assholes being in the ece class and being different but dad and I have got his back, Michael even went to the school and bullied some kids for him lol. We have got that under control now and that has helped his adjustment a lot. I am also working with the school psychologist to help find ways to help him learn and I think we are making some strides in that department. When I refer to Ethan as different I don't want that to sound negative, I mean that in a good way, he is different, he is awesome and I love that he is not like anyone else or feels like he has to be like anyone else to fit in. He is one of the coolest kids I have ever met!!! Different is not a bad thing, I am different, Michael is and Meredith is. We are all different in our own way and that is what makes us work so well. My little Buddha man always puts a smile on my face when it has been a hard day, he is getting that teenage mouth and attitude about him, but he is still the funny, caring, lovable little guy that used sleep with me every night and pinch my lips until I looked like Cindy Crawford lol. He has made A LOT of friends, just today while he has been at moms I though I was going to have to hang a sign on the door that read "Ethan is at his grandmas please try again tomorrow" It was a different kid knocking on the door every 5 minutes! "Can Ethan play" no "Is Ethan's sister home" lmao, he is the cool kid and Meredith is merely his sister and will do if he is not here to play. She has her friends also, but mostly she hangs out with her brother and shares his friends. He is outgoing and willing to put himself out there and that draws people to him. He has grown a lot since we moved, there is more kids in this neighborhood for him to play with and he is the boss hog! They all gather on the porch and he calls the shots lol. He gets out and dances and draws fans off the streets lol, he will come in all the time with a dollar because someone gave it to him for dancing. There was a party down the street one night and they had the music loud and he was out on the side walk dancing and the party came to him and was watching him and invited him to come and "perform" at there family talent show, he got candy for his performance lol.

 

So as you can see we bent and didn't break, something hard turned into something great! It is scary as parents to make decisions that impact the family in such drastic ways and the fear of making the wrong decision is heavy. I was worried, Michael and I had to really do some soul searching and put a lot of our heart in to making decisions and figuring out how to make this family whole again. We were in crisis mode and that is no way to live. I am not going to pretend that everything is sunshine and rainbow, you ALL know me better than that, but we are getting through each obstacle, I just wish we could get to a point where there were no more big obstacles. I envy those who have the normal things to over come, because we have those and so much more! I think we are stronger because of what we are going through despite the great sacrifices the 4 of us have had to make. We have some wonderful people in our lives that we may not have met if we were not dealt this hand, but I can't say that it has been worth it because we have given up so much. I would like to think that we would have got here with out these hardships, fears and struggles but I don't know. I like who we are better, but I liked us before so I would trade all the growth for Michael's health and I don't think that cancer is a blessing and I could live not knowing what I do know if it meant having my husband back and healthy. However we can't change those things so I am grateful for what we have gotten out of this "journey" for lack of a better term. I love you Michael Thomas and though we are scared and struggled to find a balance with our new fear, look back at where we have been and where we have gotten and know that WE will get through anything that comes our way as a team and still be whole! You may think that we are your reason and that may be true, but my love you are our reason and I know that is true!

 

 

Day to Day

Let me try this again! Michael didn't want anything posted in the group about how he has been feeling until after his party, he wanted to have fun and enjoy the day with out a cloud hanging over his head or people "worrying" about him and he didn't want anyone not to come because of "cancer". Though yesterday was a day of recovery for him as the days after any big event or activity is, he was still very happy with how his party went, despite how he felt he said several times "I have a lot of good people in my life" , "I had a lot of fun" and "Thank you for doing that for me". For that I want to thank everyone who took time out to come and celebrate and laugh with us, it means more to him then just a ball game or birthday party!  He has been struggling emotionally and physically the last few weeks. He has been processing and coming to terms with his limitation both physically and mentally, he has kind or withdrew in order to process this new stage in his our life. The appointment with the quaky neurologist really knocked him down, but we do have a new appointment, they called this morning with a new doctor who actually has requested we bring the mri with us, so that is a positive sign, the other doctor didn't even look at it! Friday I left work a little early in order to take him in to Dr. Hadley's office to get an iv of nausea meds and nerve meds, as we know that our mind can greatly effect our body and we have been unsure of what has been causing his sickness the last few weeks. He has not been able to eat with out getting sick, he has been drinking a lot of Gatorade and eating a lot of crackers. He has been dealing with an immense amount of nausea and upset stomach, he has been dizzy quite often, which could be from not being able to eat much, his legs have been weakening even though he is doing well at staying as active as he can. When we were in wal-mart on Thursday buying the food for the party his knees buckled and the only that saved him from hitting the floor was the cart. On Saturday he refused to eat anything until the party as he was afraid he would get sick or start feeling bad and be unable to enjoy himself and he wanted to enjoy the day to fullest. He did eat at the party, he snacked and ate 3 wings, he didn't try any of his cake until Sunday afternoon. Because he waiting to eat until the party he also had to wait until the party to take his chemo pills. This made him a little anxious as he does not know from one day to the next how his body is going to react to them, there are days that they don't bother him at all and days that he is in bed all day. This is usually his good week, the last week of the cycle when he is feeling his best before it all starts over again, he has iv chemo Friday and then will spend the next week taking his biggest doses of chemo pills. This sends him in to about 20 days of feeling really bad, then the last 8 days he is usually adjusted and feeling good before starting again, he lives for that one week, but since I am writing this you know I am home and he this is not the case, he is feeling very bad, dizzy, weak and sick to his stomach something awful, we know it will pass but it is frustrating as hell! It has been many days recently that he has been in bed a lot or on the couch laying down and watching tv. The biggest frustration for him however over the last few weeks has been his feet, they are numb all the time and hurt, he has been having trouble driving because he can not feel pedals and even walking a lot. This I feel is adding to his other symptoms because he is not able to be as active as he has been and I believe this is effecting his over all health. The frustrating thing for me in all of this is it is not the "cancer" per say making him have all these frustrating problems is the poison, the medications that he takes to keep the cancer from killing him. Until the last few weeks the lowered doses of chemo he has been on since his thanksgiving hospitalization have been doing better for him. His blood counts are still responding well to the new doses which is a blessing. His body was doing a lot better also until recently. His body is tired and though he is doing better in many aspects with the new chemo doses which we are so thankful for, his body is nonetheless tired and tired of being abused by all these drugs. We are confident there will be a day when many of problems he faces day to day will be a distant memory and we know that the realization that some of them will be a constant reminder of what he has been though is. We were told many months ago that the problems with his legs and feet and even hands (though his hands luckily are not giving him trouble thankfully) were a possibility and irreversible we hoped that he would have to deal with it. Our options are to stop chemo to avoid further damage to his legs and feet or continue and possibly have worse effects. These effects are life long effects, not just "while in treatment" effects. We have talked about these options for the last few weeks and HE has decided, because ultimately these are his decisions, I am just a support, to continue with treatment. If we are to stop treatment at this time we don't know what may happen, his cancer may stay inactive or it may not, we do know the chances of it becoming active and even growing or spreading are much greater if he don't finish treatment. He feels and I agree that quitting is not an option, he is responding well to treatment, the treatment it's self is reeking havoc on his body, but it appears to be doing it's job on the cancer. We are still unsure if the issues with his memory and cognitive abilities are long term or short term and hope to get answers on that soon. His fear is that he will not be able to work again and he worries that kids and I will suffer, we will not, we are doing well and will continue to do well. He also knows that if he is not here we will be doing worse in many ways. He is going to be here and we are going to get through each obstacle that is put in front of us. He is good at pretending everything is fine even when it is not and those of us who are very close to him know this, @janet and I are good at calling his bullshit and will continue to do so and make sure he is taken care of and everyone else can help by not doing so and letting him feel normal and seen as more than cancer and in turn helping him overcome these obstacles. Why is this update important if I don't want you to do anything, the answer is because this our journey and we want the truth of this disease out there, it may help someone else or it may help awareness. The life of a cancer patient and the people who love them is much more complicated then meets the eye and takes a lot more planning, a party is not just a party, a symptom is not just a symptom, normal is different every day, but surviving is the goal for each person I know that is having this same struggle. I have a friend and her daughter that I love dearly and I know they are struggling with some of these same issues, and I know that they look at Michael and wonder how he looks so good and how he is doing so well, I want you know my friend you are not alone, what you are going through is normal and he goes through it as well. Anyone else who may read this, you are not alone! Life is hard, but not impossible, don't give up! You are either fighting or your dying! Love all of you, you each are a part of this journey and each of you make it possible!!!

If it is what it is then make it good!

Several times over the last few months I have wanted to blog, I just don't anymore because I get to much back lash for sharing my feelings and life experience. I was thinking about this today and don't understand why it was OK for me live some of the things I have in my life, but not OK for me to talk about them or to have the people who contributed or watch read them. I mean if I can survive it then you can own it and love me for being able to talk about it and move past it. The past is not the present or future it is simply the things that allow us become the present and the future, good or bad!

I love my mom dearly and anyone who knows me knows that, but I can't deny my childhood and I will leave it at that.

Nothing I particularly want to blog about early this am, I am just unable to sleep and tired of being afraid of my own blog, life is about choices and I will not be offended if anyone chooses  not to read my random spouts of self therapy.

Michael is doing OK, not horrible, not great, but OK. We are still waiting for some test to be done at the end of the month or beginning of next. The cancer seems to still be behaving however it seems there may be come serious effects going on from the treatment to get and keep him there and those effects are really taking a toll on him mentally and my myself as well. It is hard to see someone you love so much struggle, it is equally hard to not be able to help or offer a solution. There is more I could say about cancer, medications and health over all, but if you are someone we want to share that with and are on facebook then you know where to find that information, if you are not on facebook and fit in to that category you can send me an email at sthomas4803@gmail.com and I can email you those updates.

We both have a lot to celebrate in our lives as well and have gotten to a point that we are more able to focus on moving forward and putting our energy in on things and people who deserve that energy and are positive in our lives.

Since we have decided to live our life and go on as we know everything will be OK instead of focusing on what could go wrong or might happen or the people who wanted to pull us down, well our lives have greatly improved. The quality of life for my family as whole is much better, we have a car we can depend on, a house to rent that we feel good about and our landlord is wonderful and a saint compared to what we were dealing with.

We are rebuilding and living in the moment at the same time, we enjoy life a lot more in the last few months, we no longer feel judged and less then other people. We are no longer allowing people to make us feel like we are not deserving or smart or capable because we are and the best way to give those people the finger is to show the world that we can and will get through this intact despite efforts to keep us down. The best way to fight the ignorance and drama is to eliminate it and it only took us 31 years to figure that out.

In that process we have reestablished relationships that we lost and made new wonderful ones and that is joyous!

We have found our laughter again, the kind of joyful loving laughter, not sleep deprived just getting through laughter.

With 2 funerals and reflection this week Mike and I have both had our moments, but we are working though them. I am glad I got to spend some quality time with my Uncle Ray before he passed on Sunday, but I am regretting all the time I didn't get to spend with him. Losing him has made me relive the feelings and fears I had and have about losing Michael. They have also made me want to spend more time my grandpa, Ralph means the world to me and not sure that he knows just what he means to me. He has been my father, my grandpa, my male role model and was the only man in my life that ever made me feel wanted and loved besides my husband. I enjoyed greatly having breakfast with him and laughing before Uncle Ray's funeral that morning has replayed over and over in my head since. I am not good at being there when I know I should be because I don't know what to do. My aunt Lisa is so good at taking care of Ma and Pa and I am so thankful they have her, I want to be there also, but I just don't feel I fit in to that role and I want to, if you read this Aunt Lisa and Grandma I love you all and I would be honored if you would give me some direction is what I can do to help out.



I think we have settled in to our new lives well, the kids are doing great and seem so much happier and less stressed out! I love seeing them settle back in to life and not worrying so much. Michael and the kids are closer then they ever have been before or after cancer, they spend a lot of time together and even tonight, Meredith was feeling bad and she wanted daddy to take her to immediate care, it made me sad and glad at the same time. She has strep throat but she is fine, been sleeping since she got back, took her anti biotic's and Tylenol. I am sure she will be feeling better tomorrow.

There are things I could complain about tonight, but I chose to live for the things that make me happy! I have always taught the kids that life is about choices so it is time that I take my own advice. I have been doing that and I am much better for it! Also things seem to be just working better this way.

Cherish what you have no matter how hard things get!

A poem I wrote a while back

I want to fly high above, above the sadness, violence, sickness and conditional love. Truly free, no more trials to test my time.

 Joy to feel never having to say good bye, to be a vision of a song that is sang,

A tune of sweet untarnished melody flowing along the waves to drown out the yin and enhance our inner yang.

Notes of solace spread to my inner destiny, if this could be reality instead of a far fetched fantasy

I want to soar the open mind, the sky of true, experience the spirit of peace defined.

Seeing the loss of sadness in my loved one’s eyes, feel a touch deeper than skin a touch that never has to end.

 Forever blue doesn’t flatter my soul, I prefer a sunny yellow shade of me, one that can shine through to absorb the tears of sorrow and never ending pain I see.

 Imagine a day, just one that despair had no gain. Insane the thought of a joyous rain

I want to glide through the one day at a time to zen that is not only mine.

A calm to be experienced, felt, instead of talked about.

The storms not even a memory, able to trust and not doubt.

The emotional tornado never happened, never to see the whirling roles I now play;

My air is free from all unbalanced misery if just for one day.

 I close my eyes to feel, enjoy the warmth of senses not the darkness for where to hide.

If it was only possible to really get off this, long treacherous ride!

I don't wanna grow up, but if I did......

I remember being a child, first a toddler wanting to be big enough to get a big girl cup and wear big girl panties, than being a young girl who wanted to wear make up and have boys like me and well, I already had the boobs.Than there was adolescence, you wanted to be a cool teenager so bad and get to drive a car, or at least ride in a friends car, freedom was what we all wanted at that age, room to grow and be who we knew we were destine to be. Sex fun and gossip was what it was about. Then came young adult hood, late teens and early twenties, but not worry by this time you know everything there is to know about life and the problem is just that no one understand you! Problems then was where to go and hang out, and who was sleeping with who and who was in or out that week, my life was ruined by things like a girlfriend talking bad about you or dating a boy you liked. A simple dirty look or eye roll could just fuck up your whole day. The ultimate problem was people who didn't like you always starting trouble, calling you names, and judging you unfairly.

Well evidently I am a grown up now, ultimately that happened really fast over the last year and even though that last part is kind of still the same, the part about people not liking me and judging me unfairly, the rest has drastically changed and I would love for something like a spat with a girl friend to be my BIGGEST troubles and to be what kept me up at night, like this night when I have work tomorrow and need to be resting.

Things are not that simple anymore, back then it seemed like such a heavy burden, but now it seems like a vacation and even a little fun. I would trade "Brainwashing wife"  "Bad Mother" or  "Broke" FOR "fatty fatty" or "Bo Bo" or "Bubbles" any day. Those names may have hurt my feelings, but the ones I get called these days hurt my soul and my family. That though it not even a real problem, just petty bullshit.

Now grown up problems keep me up at night, like Cancer, who thought that at my age that would be such a common factor in a my life, my blog and my strength. Just in the last few weeks, my husband continues his fight, a friend I love has been struggling with the loss of her husband, another friend I adore and love was diagnosed and a new friend, but one with just as much of a connection to my life found out her husbands cancer is back. The common factor is all these stories is Cancer, something that was someone else's problem and not mine until a year ago and now it is my problem on many different levels, as a care taker, a wife, a mother and I am also trying to define my role as a friend and supporter to those who need me as much as I need them. I have found that all my years of "being the friend" and listening I have become good at being support for those who allow me to be. I have been the person in my family that often is the problem solver, the helper, the voice of logic, but I am just now branching out more to people who really need me. I had to also take on a role that was very difficult for me and still feels awkward, I have had to be the vulnerable one who needs help and has had to learn how to accept it.  But because of people I have met that have given me that support it makes me very aware and willing to pay it forward, i have learned from great friends like Carin, Tami, Mary and Barb how to be a good support in this community on these journey's and I embrace it and I get to help others, make friends and there fore allow other to pay it forward by learning from what I have been taught. It may not make sense to you, but it makes perfect sense to me.

 My problems now are harder even though my life and child hood was no easy road because now I am the adult, the grown up, the decision maker, the figurer outer, the voice of reason, the one that is looked up to by those innocent people I created with love. I sometimes sit and think, I sometimes drift off in my own world and get lost, but one thing I drift off to lately is trying to figure out when I became the adult and if I am a good one or if my kids will look back at this time in our lives and be scared and feel I let them down. I feel very let down by my parents as an adult just as I did as a child and I don't want that.

This journal entry was inspired by my chldren, i am amazed at the people they are becoming and how they still like to spend time with me though I would expect them to be pushing me away. I talk to them often about serious and silly things. When I hear my daughter come home ranting about her day and school and troubles ( you know little girls) it takes me back and makes me laugh, I try not to take it to serious, but let her talk and share my experiences with her. Why did I want to grow up so fast? I wish I had not had to, I wish I had been allowed to be a child. Through talking to the kids though it took me back to the days of ole when the boy you like liking another girl was just the end of the world. I long for those days because this version of being a grown up that I got sucks. I make the best of it, don't get me wrong, it sucks, but we make it suck with style, I just wish I didn't have to try so hard all the time.

I have stressed to my kids to enjoy their childhood and to embrace it, I don't want them to grow up to fast and I don't care who makes fun of my son for playing with Barbies, better then kissing your daughter right!

I think though I have done a better job on my kids because during this conversation that inspired this post I tell Meredith that she is growing up so fast and before long she will be driving and dating and so on and she said to me that she didn't want to grow up, she wanted to stay a kid. At her age I wanted to grow a year a week.

This is another ranting post that don't make much sense I suppose, but the moral to the story is don't grow up to fast and even when you do, take time out to be a kid it will keep you sane.

Hugs and Kisses to you all,
Stefanie aka Fluffy