Just keep Swimming.

It has been a busy couple days for us. I think I left you guys at last Friday getting the MRI. Well since the MRI was done on a Friday we weren't able to see anyone till after the weekend, so it was the big waiting game like always. I think Donnie laid in bed the entire weekend, he was really nauseous and he kept throwing up. We had no idea why though but after a couple days of that he decided to stop taking his antibiotic (the ER gave him), because he thought that the mixture of his pain meds and the antibiotic were making him feel sick. He did feel much better on Monday, So that was probably it. He's still in a good amount of pain but at least he isn't sick! He did go back to work for a few hours today before we went to his ENT app. to get some stuff squared away. He doesn't really have any leave left because he used all of it up when he spent the 3 weeks in Reno, so his boss is trying to get some donated to him through a base wide email. Sometimes people will donate their extra leave to people with medical issues, its just a lot of paperwork. He going to go in again tomorrow as well to finish some stuff up, but he has such a hard time staying very long because he just gets so wore out from the constant pain! Ok, ok, on to what the doctor said... Yesterday we went to the Ophthalmologist (DR. Brimhall), he was really nice and helpful. It was actually funny because Donnie recognized him from being the eye doctor on base a few years back :) Anyway, he looked through Donnie's MRIs but couldn't really tell us a whole lot about them. He just didn't know enough about what he was looking at to really help us. He did refer us to a different doctor that deals with more of the orbital surgery. So we have an appointment with her tomorrow. Today, was the ENT (Dr. Lomax). We kinda figured he would tell us the same thing as Dr. Brimhall, but he seemed a little more knowledgeable about what he was looking at on the MRI. He told us from the MRI report the mass is more flat and less of a lump. Instead of it being a big round lump, it is more like play-doh when you flatten it out. Its wide and long but not thick. The dimensions are 2.9x5.5x6.5cm and it starts at the back of his throat, goes up the back of his nose and into his right eye orbit. Its pretty large! Dr. Lomax told us that it's not something they can operate on and remove, it's something that has to be treated with treatment ie: radiation and chemotherapy. Which pretty much sucks. Donnie is just in so much pain and discomfort, that it would have been so wonderful for them to say, Yep we can remove it! But that wasn't the case and so we just move on. The ENT suggested us getting to an Oncologist as soon as possible. And we decided that we're going to part ways with Dr. Forsythe and find a new set of eyes that can give Donnie the attention he needs. We have an appointment on Thursday with a new Oncologist at the Nevada Cancer Institute, so we'll see how it goes.

I feel so numb sometimes, like all these thing are happening around me but mind is never far from the whats next. I'm constantly thinking 5 steps ahead and never really living in the present because I am so afraid sometimes of whats to come. I try so hard to keep my kids life as normal as possible; play dates, school, karate class. But I know I am not taking it all in as much as I should be because my mind is always preoccupied. I always think to myself, uh I just want our life back but this is our life and I forget just to enjoy what life we do have and stop wishing for another one. I constantly have to tell myself that because Cancer sure has a way of not only affecting the person with Cancer but everyone else around it. My main priority is getting my husband better because I need him.We have to just keep swimming and eventually we'll make it! Me and Donnie were driving in the car the other day and I told him that if he dies on me, I will never forgive him! HA Most of you will think I'm such a terrible person to say that but sometimes we just have to laugh about it all because as soon as I stop laughing I just want to cry! I had to give him a little reminder that he has to fight, that he can't give up, no matter how shitty it is! I don't think I could get through this life without him helping me! Haha I love that guy, even if he is always sick ;-) Now that I just made everyone hate me I'll stop :)

Updates to follow!

Day by Day.

Not to get all technical but it
 looks like Donnie's mass
is under the purple and blue bones.
Pushing into his eye and creeping
where the teal bone is.

So yesterday was the ear, nose and throat appointment. I guess it went as good as it could. We really liked the doctor (Dr. Lomax), he was very informational. He showed us all of Donnie's scans and explained as much as he could, which is a rarity with doctors! He also did a scope exam through Donnie's nose and looked at his sinuses and his ears. Dr. Lomax said by looking at the images and what he saw himself, that it looks like the lump is located under his orbital bone. Which is all the bones that make up your eye socket and a little bit of your cheek bone. Haha sorry for the science lesson over to the side, it's just sometimes easier to visualize it if you can see a picture. So he will also need to see an Ophthalmologist (deals with anything involving the eye or around it). He will be able to do more for Donnie if it is more in his eye. But the first step is MRI, no doctor can really tell anything until Donnie gets one. A MRI is just more detailed, they are able to see where it is exactly. In the cat scan the doctor just really couldn't tell where it starts and stops and exactly how big it is. I mean you can pretty much see around where it is but not good enough to be able to tell where they can biopsy it! So this morning he had his MRI. It was kind of a nightmare though because I forgot the referral paper at home and we were all the way across town. But the nurse ensured me that it was no big deal they would just call my doctor (Dr. Forsythe) and have him fax it over. Well apparently they were too busy to do that. Nice I know! So I called and had a few words with them. ::I generally have pretty good patience with doctors and their staff but I have been trying to get a hold of Dr. Forsythe for the last 3 days and NO one will call me back, so by this morning I could say that I was a little pissed:: The office girl told me that it was my fault that I left the referral paper and she didn't have time to deal with me! Yes, it was my fault, people make mistakes, but they are his doctor and he NEEDS to get this MRI done. Long story short I had to drive all the way home because they could not take 5 minutes and fax it! I was furious though, my husband is in pain, we need this process done like yesterday! Actually I didn't drive all the way home because I had a nice enough Aunt to meet me half way, which totally saved the day :) But still it's annoying because, there are so many steps before something can actually be done about it. Anyway, he was able to get the MRI done but we weren't able to make the Ophthalmology appointment that was directly following the MRI so we had to reschedule for Monday. Then Tuesday is back to the ENT. Because of course all of this had to happen at the end of the week and not the beginning :) Hopefully after all that we will be able to get some answers as too what they can do for him. Dr. Lomax also said that there is a lot of lymphatic tissue behind the nose and around the sinuses, so even just removing the lump might not help. Donnie would probably have to get additional treatment to get rid of the other tissue that looks to be enlarged. So, we'll see. As of right now Donnie isn't working, He's having to take a lot of pain pills to deal with the pain so he pretty much just sleeps a lot. Our main priority is getting him healthy. We are just taking it one day at a time :)

Can't catch a break.

So I know I promised something happy but too bad :) Donnie can not catch a break, I mean seriously if it isn't one thing it's another with him. I feel so bad for him because he just can't get better. He has had this sinus infection thing since June that he hasn't been able to get rid of and it just progressively keeps getting worse. He's been on numerous antibiotics, off gluten and dairy, getting vitamin c IV treatments, and allergy shots and he still can't kick it. It's getting to the point where it's unbearable. On Sunday, he laid in bed all day because he just couldn't function. He took some pain pills but they barely helped. He's been trying to go to this sinus clinic but they keep rescheduling his appointment. Apparently the doctor got injured. He had an appointment on Friday to figure it out, but they called him again yesterday and rescheduled again. So by the time he got home and told me, he said he needed to find some where else to go because he couldn't wait any longer to get relief. So I called a couple different places and was able to get him an appointment on Friday again! But by the time dinner rolled around his face started to look really swollen by his eye and cheek bone and I could just see all over his face how much pain he was in. So we decided to go to the ER.

We went to Centennial Hills because we hear the wait is shorter :) 

and it actually was in ER terms! I think we only waited about a hour in the waiting room. When we finally made it in the back the nurse kinda went over some preventative stuff so that this doesn't keep happening. But I mean seriously he has been doing everything to try and fix this but nothing has been working. Finally we saw the doctor and he asked him a few questions about the pain and where it is and what symptoms he has. Then he said he wanted to have him get a cat scan, to see if there was actually an infection and fluid in his sinuses. We waited about a hour and they came and got him to do the scan. About another hour later the nurse can back with the results. The good news; its not a sinus infection, the bad news; its a mass. I just hate that word it's so shitty, mass! At that moment I actually said to myself " another fucking mass" sorry for the language but that hit me like a ton of bricks. Just when we thought things were looking up. No more Rituxan, No more weird symptoms, Blood works looks excellent. I mean all this time we've been thinking he had this terrible sinus infection and it's a lump. The nurse tried to be all optimistic saying oh don't worry they can do a biopsy and find out that its nothing, just benign. But we both know that's slim. I actually started to cry sitting in that little curtained off room, with the people joking next to us about what they should get from the snack bar. It honestly took me a minute to grasp it, it's like someone knocks the wind out of you, like it hurts just to take a breath. It made me feel so guilty for not taking his pain more seriously because now it had just become so much more serious than we ever imagined it to be! Its funny because in hind-site I think the doctor knew it wasn't an infection because who orders a cat scan for an infection! They said it's about 3 cm. Which is pretty big to have in your sinuses. Anyway, they discharged us and told us we needed to see an ENT (ear, nose and throat dr.)as soon as possible. Well, no duhh, we've been trying to for the last month. I spent most of the morning today on the phone with various doctors, trying to make new appointment and canceling ones he already had. I was able to get an appointment with an ENT for tomorrow at 8:30am. They will need to do a biopsy and probably an MRI, but who knows when they'll actually be able to get us in to all of this. And as much as we are opposed to surgery, he will most likely have it surgically removed. He is just in too much pain to not get it removed as soon as possible. So I guess updates to follow. I have no idea what they are going to be able to do for him tomorrow but we will see!

A big thank you to my aunts and grandma for watching my kids for all this. Also Nicole, Thank you for all the help chauffeuring Brody around :)

Cancer.

As hard as we try to not let cancer consume our lives it was made very clear to me the other day that it does. When I was working in Brodys class last week, we were all finishing up cleaning and Brody was on the play phone talking. While we were all doing our own thing we could all hear him having a conversation about Cancer, "well do you know what cancer is?" "oh yeah I know what it is?" "oh you have cancer?" I mean he must have said Cancer 5 times. I have to admit I was a little embarrassed to have the teacher and other moms hear him talking like that. I felt like he is too little to be talking about that but obviously that's what he hears us always talking about. Mrs. Fitz told me that it was good that he was role playing and talking it out but if I'm being honest I feel guilty that he even has to hear that word, like all this Cancer talk took a little bit of his innocence. Like he should just be a kid and not have to worry about Cancer. I have tried to explain it to him, I mean, in a daddy is sick kind of way. I obviously don't give him full details but even the basic ones I give him he still doesn't really get. You know I try to be so strong and hold everything together but at that moment I felt like I failed, I want him to be chasing dragons and pretending to be cops and robbers not talking about Cancer. I'm always trying to stay all positive and make everyone think that everything is going fine but I started this blog so people could understand the journey and honestly this journey sucks sometimes. I have to say that I hate Cancer and what it has done to me and my family. I hate that it made me lose a bit of my innocence too, I'm 25. I never thought that this early in our life I would be spending my husbands days off watching him hooked up to a IV all day and running him baths for his excruciating leg pains and spending our extra money on medical bills. The stress has changed my relationships with people and not always in a good way. The weight of it all is sometimes numbing. When you open up a $38,000 medical bill you kinda turn into a different person, you kinda go in cruise control, with your mind always on something other than what you're doing. The stress is beyond anything I could have ever imagined. I appreciate that people perceive me as strong but trust me there are days were I am as weak as it get. Aside from all of that, the stress of losing my husband is sometimes unbearable. I never imagined worrying about losing him so early in our lives. I try to just tell myself that he will be better and one day it will be over and we will be able to move on but there some days that all I can think about is how I would do all of this without him. And I have no reason to complain, he could be my 4 year old son, or my grandfather that can no longer speak because the Cancer is too far gone or a person that can no longer get out of bed because the pain is so bad. In all actuality we have it easier than most, he is relatively in good health, he can hold a job, give his kids a bath and have a cup of coffee with me in the morning! There aren't many Cancer patients how can say that. I just so badly want things back to normal, I just hope it comes sooner than later! Sorry for the rant, this was actually very cathartic. I promise the next post will be happy :) Until next month he he... just kidding!

Oveeerrr.

Hooray.. Rituxan is over! Well at least for 6 months. Donnie finished his last treatment last Friday. And he/we are so glad to be done. It actually went really smooth, except for a few minor hiccups. The first time he had it the only side effect he had was itching , but it went away as soon as his IV was done. The second week went fine, no side effects. But the third week he had a really weird side effect. During treatment and immediately after he was perfectly fine, we went to dinner, went out for a little bit with family, came home, and went to bed. But when he woke up in the middle of the night to go to the bathroom he couldn't move his legs. Weird.. I know. It took him like 20 mins just to walk 20 feet. He said it felt as if his knees were cemented and to bend them was excruciatingly painful. He couldn't lift his legs, bend his knees or really walk. He never woke me that night, he just did it himself but when he woke up in the morning I could hear the worry in his voice and how much pain he was in. So I ran him a really warm bath and called the doctor. He sat in the bath for a good hour. He said they felt better but they were still painful. The doctor told me that it is a pretty common side effect with this drug and to just watch for chills, fever, confusion and blurred vision because that could be a sign that it is a nervous system infection. Which I mean honestly scared me a little. This drug makes Donnies immune system almost non-existent, so he is susceptible to all kinds of stuff. Long story short ha.. it was gone the next morning. It was really painful for him and I felt awful because there was really nothing I could do for him, except take his pants on and off :-) haha all kidding aside, I'm glad that it only lasted 24 hours. After the last treatment we were pretty worried that it would happen to him again but lucky for him it didn't. We are just glad for that treatment to be over because it sucked to be stuck there every Friday for 5 hours. We want to do fun stuff on our days together :)

Oh to be 4.

I just love this picture of him jumping

Brody had his first day of school last week. He is now in the 4's class with Mrs.Fitz. I was able to work in his class the first day, so I was able to get a bunch of pictures of him playing and painting and reconnecting with old and new friends! He loves that little school, he's blossomed so much in the past year! I can't believe how fast time flies. I just love that little guy :)

I can't believe how grown up he looks.

Stay-Cation.

We had a much needed stay-cation a couple weeks ago at Red Rock. We weren't able to stay very long just one night because Donnie had treatment the next day but it was so nice to be able to spend one night away from home. Ha who am I kidding?! It was a nightmare! I mean don't get me wrong it was nice to spend a few hours at the pool and not have to make anyone dinner or breakfast and to be able to spend time with just us but stay-cations are not meant for one year olds :) When we first got there everything seemed to be going smoothly; we played at the pool, ordered room service but it slowly started to go downhill when I needed to put Mia to bed. I had this great idea to let Brody have a brownie sundae from room service and then we would all watch a movie and go to bed. Well, right as Mia was almost asleep, room service rang our door bell. I guess I didn't think that one through too well! Bing, Mia was up and ready to go! Brody ate his sundae and we started the movie. Mia was fine for the first 20 mins and then she just wanted to run around, which would normally be fine. Except that those little boxed bar snacks that you have to pay for, that are weight sensored. So if you pick them up for more than 45 seconds you get charged, well they were right at her grabbing level. So about every 2 minutes she would run over pick one up and one of us would have to jump up from bed and hurry over there and put it back on the tray. Finally at about 10:30 when she was pretty much punch drunk she fell asleep. Then came the next dilemma, when I first checked in they only had one bed rooms available so I had them bring up a crib so we could put Mia in it and have Brody sleep with us. Well what we didn't think about was if she wakes up and sees us all in bed without her she would have a fit so we decided to push the crib in the bathroom and shut the door so it would be dark and not noisy. We thought this was going to turn out great until 4 o'clock in the morning when Donnie got a blood nose and had to hurry to the bathroom, haha. She was up and took about 2 hours to get back to sleep! I mean honestly it wasn't that bad but it was definitely more hassle than it was worth, Mia is just not ready for stay-cations yet :) We did have some very fun moments though... The pool was amazing, we had a blast swimming around. And Donnie did see Vince Neil in the bathroom, which kept him on a high for a good three days! Nothing like making memories :) Here are a few pictures. I especially love the one with the huge sundae at 9 o'clock at night... What was I thinking?!?

Marker Monster.

(Pre-Post)

So apparently I am awful at updating this blog because I seem to always post once a month and write about eight at one time. I apologize for my scatterbained-ness (is that a word?!) anyway, thank you for bearing with me! And at least liking my blog enough to come back and check it :)

Real Story:

Now that Mia is officially a walker, she is officially a monster he he ;) No but really, she is into everything; trash cans, toilets, hampers, MARKERS. I was sitting at my desk the other day organizing some papers and filing them. Mia was playing on the ground right by me and apparently reached up and grabbed a marker when I wasn't looking and decided to eat it! Silly girl always getting into trouble :)

The bottom right is my favorite ;)