Holidays

Treatment #7 didn't end up being such a great one. Two Saturdays ago Mike woke up and couldn't get out of bed. He was dry-heaving, sick to his stomach and he had a lot of stomach pain. He stayed in bed the whole day. I kept bringing him up food and liquids to drink. He was so nauseous and he couldn't keep anything down. It was awful to watch. Then he would get the sweats and feel like he was going to pass out. I wanted to call his oncologist but he insisted that he would be fine. I now know not to listen to him... Four days later on Christmas Eve we ended up back at Dana Farber. I had called his doctor on Tuesday night and he insisted that we came in on Wednesday. I was upset because I didn't want to go to DF on Christmas Eve. I had planned on cleaning the house and preparing food all day. But Mike's health comes first. I knew we had to go so he could feel better. Mike was in a lot of pain again on Tuesday night. He couldn't get off the couch. To make matters worse I was in the kitchen getting food ready for Christmas and saw something out of the corner of my eye go running across the floor. I started screaming and jumped onto one of the chairs. It had looked like a rat! Mike came in but missed the animal! Then we could not find it and I started to think that I had hallucinated and never really saw anything. About 10 minutes later it came back upstairs and Mike spotted it. It was a mole! We have no idea how it got into the house. I called my dad crying and he came over with traps to help us get it out. We were not able to get it out on our own but my dad and Mike's dad went through the basement and we think it may have ran out the door while they were moving things around. We have not seen it since so it must have gotten out. Needless to say we did not have any visitors on Christmas Day thank god!

On Wednesday, Mike's dad went to the hospital with us. The doctor was disappointed that we didn't call sooner... Mike was severely dehydrated and had lost 12 pounds from the week before. The doctor gave him new meds to help with his constipation from all the narcotics. He also got 2L of fluids. He was feeling better by the time we left. Once we got home he took a nap before we went to my parents for Christmas Eve.

Christmas Eve and Christmas day were a blessing! Christmas Eve was at my mom and dads and Christmas Day was at our house. Both days we spent with all of our immediate family. Mike felt good and was able to eat and drink again. Thanks to Mike's brother Doug and Tim I found my new love of wine/champagne. I kept saying how I was grown up and was more sophisticated. :) We played pool, exchanged gifts, and ate tons of food. Ava had a great Christmas too! She had tons of gifts to open and was really excited the whole day. Mike and I both agreed it was the best Christmas ever! 

Mike's Family

My Family

The Howell's <3

Typical Day

Ava & her new bike

Me & my Fighter!

Like I've said before we need to have a few good days to forget about all the bad days and suffering that goes with it. Every day is a struggle but every day he feels good is a victory for us and we will take it. 

Today was treatment #8 for Mike. He woke up feeling pretty sick. He had a migraine and started to throw up. He didn't think that he was going to make it to treatment but I kept insisting that he needed to go. Even if the doctor decided that he didn't want him to have treatment I wanted him to get checked out. After learning the hard way too many times I don't like to mess around when he doesn't feel well. We were late but we made it. My mom came with us today. She was on Christmas shut down at her work so it was one of the only times she would be able to come in with us. It was nice having her there. Mike did awesome at treatment today. I didn't think he was going to do so well considering the way he was feeling this morning. His nurse Elena is amazing. She knows what Mike needs and likes. She got him a private room with a bed today which he prefers over the chemo chair. She also turned the heat off for him so the room was cooler by the time we got in there. Last week we gave her a card with a purple ribbon and a Mike's Fight bracelet. Today she was wearing both of them. It's amazing to see how much the staff cares for Mike. He truly is in good hands at Dana Farber. He was able to sleep most of the time and he didn't get sick. When we got home he surprised me and even ate some dinner! I am so proud of him. I can not imagine what he is going through physically and mentally, but yet he handles it so well. I am honored to be his wife and I love him so much.

I've been doing pretty well too. Emotionally I have been feeling pretty good. It never gets easy. The scary thoughts never go away but you find a way to get through it each day somehow. I will never understand the why's and what if's. There's no point wasting your time and energy on those things. You just have to do what you have to do in the moment. We hug and kiss as often as we can. We tell each other we love each other all day long... it never gets old. We laugh and we cry when we need to. We do it all together... I know I am not alone and neither is he.

Mike and I are happy to say that we have booked a vacation! In February Mike, myself and Ava will be taking a road trip to Disney World in Florida. We can not wait. It will be a great time. Mike's brother got us a video camera for Christmas so between that and my new fancy camera we will be making many memories! We are hoping that some of our families will be able to meet us in Florida too.

Praying for Mike to have a quick recovery from this weeks treatment!

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Tough days

Mike had an awful day on Saturday. He wasn't able to get out of bed all day. He was in excruciating pain, dry heaving, and had the sweats and chills. I thought he was going to have to go to the hospital if we couldn't get his pain under control. Luckily I was able to get him to eat and drink a little bit and take his pain meds enough to get him more comfortable. Once he stops eating and drinking fluids it's hard to keep him from getting dehydrated and setting him back. This makes it harder to bring him back from the pain and dehydration. 

Some days it's just about focusing on each minute and what we have to do in that moment. Watching him finish eating some pears and an applesauce is a small  victory for us both. 

We had dinner plans with my parents that night that we had to cancel. It was not a big deal we all understood he wasn't feeling well and it was not worth him trying to get up to be miserable. My parents and I both fully understood. He was disappointed and hard on him self for as he put it "ruining dinner plans". In all honestly he didn't ruin anything. I was content staying home and picking up the house (who would have thought!) So he stayed in bed and rested. Days like these are so hard for me. They are even harder for Mike and his body. The pain was a 10 on a scale of 1-10, 10 being the worst. Each wave of pain drains his body more and more until he his exhausted. Easier said than done I try to push him through the pain and get him through it. These bad days scare us both. We never know if things could take a turn for the worse and we don't know how bad things can get. We try not to think about these things. We try and focus on mindfulness. (Keeping our minds focused on the present moment) They are not posivite thoughts for our minds however they are impossible thoughts to fully avoid. 

Mike was doing better today. He looked better but still was not quite himself. He is still very nauseous and has stomach pain. He is not eating and drinking as much as I would like. But I do understand that it is a huge struggle for him to eat and drink. One of the side effects of chemo is lost of taste. He says all food tastes horrible and it's hard to eat when he's not feeling well. I totally get it I can't imagine anything tasting good. He's lost over 40 pounds since he was diagnosed. We both don't want him to lose more weight because it makes him weak and harder to fight. I'd have to say he is so strong. Stronger than most people that are in his shoes. I am so proud of him! 

Nothing is guaranteed in life... I thought I was on top of the world 3 months ago... I was good at my job I was getting ready to have my dream wedding and we were planning out our future together... Then it all came crashing down. Literally in the matter of days. One excruciating day after another that lead us to his unimaginable diagnosis. It has really put life into perspective. None of us are promised to live these long elaborate lives and we are not promised to live one day to the next. Anything can happen to anyone. No matter how healthy you think your life style is or how invincible you may think you are. Anything can change in the matter of moments. This is something most people don't realize while they live their busy lives. You get so caught up in life. I learned to drop everything and to step back and look at my life. To not take people for granted. To not get wrapped up in work and take it home every night... Only to miss out on time with your loved ones. Nothing is more important or more valuable in life than your family... Nothing! Family is everything. A lot of people can't slow down and realize that. It's sad and I feel bad for them. Another lesson I've had to learn the hard way...

This is such a hard life struggle to face at such a young age. It has made me think of everything in life differently. It's made moving on in life harder. I can't say I look forward to much of anything now. These thoughts stem from the anxiety and depression that has set in. Mike and I both take a low dose medication each night to help us sleep and get through each day. This was hard for us to do at first. We both refused to take any kind of anxiety medication but we learned quickly that we needed it and that was okay. This new life sucks.. Ava and I both agreed we would rather break both our arms and legs so daddy didn't have to go through this... Another thing in life you can't do is bargain with your health... You get what you get... You learn to live with it or not. We choose to take it day by day because that's all we can handle right now.

I have to thank everyone again for all the generous gifts and donations we have received. People have been amazing to us. If it wasn't for our fundraiser we would be seriously struggling with money right now. Every little bit helps. We are not able to work much right now. Not working has been very hard on both of us. We both learned at a young age to work for the things we want in life. Since age 13/14 we both have always had a job. Not working makes me feel like I'm failing. However I wouldn't give up the time I spend/care for Mike to go to work. He needs me and I need him. After the holidays I will be looking for some work that I can do from home to help pay the bills. If anyone knows of some at home work I could do please email me at slanza24@yahoo.com anything at this point would be helpful. Thank You! 

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Moving through the motions...

Mike has still been feeling pretty crappy from his treatment he had on Monday. I always feel bad when he's hooked up to his pump for two days. He feels tethered down and looks miserable. I don't blame him. He doesn't sleep well on his back and his pump forces him to sleep on his back. I disconnected him from his pump this afternoon and gave him his immune boosting shot. His mood always changes for the better once he gets it off. He always heads straight for the shower. When I was disconnecting him Ava was watching me. I was showing her the needle that goes into Dad's port. She looked at it and was a bit squeamish. Mike and I like to keep her involved so she can some what understand what dad is going through. She seems to appreciate it and often will ask questions about his cancer and treatments. She still seizes to amaze me with how she is handling everything. Last treatment Mike may have had a reaction to his immune boosting shot. We will be keeping a look out to see if it happens again. His oncology told us apparently taking claritin can prevent him from having a reaction. 

Mike has been very tired the last two days. He slept till noon and went to bed early both days. I hate seeing him so miserable. It's the hardest thing I have ever had to do. He's always been my rock and is so strong. I will never understand why this had to happen to us or why it happens to anyone. It's just not fair... During treatment it's like he's unrecognizable. This stupid disease strips him of his personality. Then the following week he looks great and we are able to get out of the house and do things. The stress my body has been enduring is exhausting. It makes my illness worse... I don't blame him for it though it's not his fault. It's hard to keep positive every day. One day at a time... The holidays also feel very different this year. They just don't feel the same as they used to. Nothing feels normal anymore. We are just moving through the motions of each day the best we can. 

After telling Mike I was convinced that his car was leaking gas for two weeks I found out it was my car that was leaking. Last month one of the coils rotted out and it stopped driving. That was $230 to fix. Today we found out I need an entire new gas tank because it was junk that's $500+. Very frustrating! To top it off my computer is about to blow up. It keeps over heating and shutting down. I had to tape the battery in because that broke too. However I can't focus on these small negative problems. I just don't have the energy.

Mike and I really need something to look forward to. When Mike was diagnosed with cancer it was 22 days before our wedding. We were able to look forward to the wedding. Then we looked forward to our mini honeymoon in North Conway. Now it's winter, it's cold and Mike has trouble going outdoors due to his hands cramping up from the cold. We feel like we have nothing left to look forward to. We need something positive to look forward to. We have been thinking about planning a trip. However we both refuse to fly. His white blood counts are low due to treatment and it's risky for him to fly. Our last flight to Florida Mike passed out on the plane. We had thought he was having a seizure. That flight was horrible and has scarred us ever since. We also both have way too much anxiety to step foot on a plane. This is why we cancelled our honeymoon to Antigua in October. We often regret it but it was the sacrifice we took. Not having a honeymoon has defiantly continued to upset us both. Before the wedding like anyone else we worked hard and looked forward to it. We used to stare at beautiful catalogs of bright blue seas, swim up bars and beaches in Antigua. I guess we will never fully get over it. Hopefully in the future we can do something nice that will stop us from beating ourselves up over it. 

Tonight Ava and I made an advent calendar while Mike rested. Here it is below! She was a great little helper! Her and Mike kept yelling at me for being too hard on myself. Anyone who has worked with me or knows me well... I am a perfectionist... So every time I yelled at myself for making the numbers too close to each other or making the tree crooked they reassured to me it was great. It still took me two attempts but here it is!

Tomorrow Mike plans to finish up some Christmas shopping and wrapping. I am going to my previous employers for a holiday work party. I am very much looking forward to it. Family Service has been so good to me. Not only do they do amazing work but some pretty great people work there too! I very much miss my Stand & Deliver students and mentors. 

Time to check on Mike and Ava and then enjoy my guilty pleasure of watching my reality TV shows (that Mike thinks suck!) oh well!

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It's Been A While

It's been a while since my last post. Mike & I have been busy like everyone else trying to prepare for the holidays and making things as normal as possible. One of the hardest things about this unwanted journey is trying to live life with cancer on a daily basis. The rest of the world continues to go on while we are still in the shadows trying to make sense of everything. It always feels like we're a day behind and trying to catch up. Stupid things keep happening that push us down mentally. Things like car troubles, paperwork not being filed correctly, medical bills and some other very unfortunate but unmentionable things. We are trying to do the best we can to get all of our affairs in order to make things easier on us. All these stresses make it mighty difficult to get through the day sometime. We know it's normal and everyone has these issues it just seems like we can't catch a break. We just keep pushing through the best we can.

On December 5th we had an amazing experience with a non-profit organization based out of California called Life Chronicles. 

The mission of LifeChronicles is to provide comfort to people during defining times in their lives by providing video recordings about their life experiences as well as their messages of love and wisdom for future generations.

The founder Kate Carter flew out to meet with us. She also had a local friend (former NBC worker) that wanted to film her filming us to raise awareness about her non-profit. They hope to submit a film to the New York Times to have it published. We will see... She filmed Mike and I alone and with our families. She asked us some pretty tough questions on camera that you would never imagine to ever be asked on the spot. The experience meant a lot to me. Mike understood that and I am thankful that he allowed for these strangers (who became friends) to come into our home. We laughed, we cried, we reminisced about some good times and bad. I look forward to seeing the footage some day when we are ready. I would highly recommend this experience to anyone who is facing a tough disease or to someone who is elderly. In fact I already did recommend it to some new friends of ours that are battling cancer and they did it too. It is a great way to capture moments with those you love during a difficult time. Our hopes are that Mike, myself and our families will be able to watch this video a long time from now all together. If Mike is not with us in the future at least I will have these precious memories... I am happy we got this opportunity. If you are ever looking to donate to a worthy cause please consider Life Chronicles. They have given us something we could never do on our own during a challenging time. They work hard to give this amazing gift to people in difficult situations. Like any non profit they live off of donations. I will defiantly forever pay it forward to them and donate to them each year. Thank you Kate Carter and the Life Chronicles team! You truly make a difference with your hard work and precious gift.

Mike had treatment number 7 today. He was very anxious going into it. We found out that we were not going to have our regular oncology nurse today and it made him very nervous. His anxiety kicked in while we were in the waiting room. His blood draws were scheduled at 12:15pm today we didn't see his oncology doctor until 1:30pm and we got into his infusion room at 2:45pm. Treatment started at 3:00pm and ended at 6:30pm. It was our normal 9 hour day. His usual nurse, Elena was away on vacation. Elena always does everything she can to make Mike feel comfortable. In fact she makes all of us feel at ease. All the nurses and doctors we have had experiences with at Dana Farber deserved a huge THANK YOU for the hard work they do. 

Mike does not handle treatment days well. He doesn't like being in the hospital... no one does. Today, he struggled with treatment more than any other session. Right when he gets hooked up for treatment he almost immediately feels sick. He gets extremely nauseous, his skin gets very pale, he twitches and shakes, gets the chills and then sweats. Today he was dry heaving a lot and his stomach kept turning. They pumped extra anti nausea meds into him every hour or so. They seemed to help. It's so upsetting to see him like this. I stay strong for him during treatment but by the time I got home tonight my emotions were all over the place. I took a shower and completely broke down. I stood there while the scolding water burned my skin but yet I felt completely numb. I hate to cry in front of him. I want him to keep his head as clear and positive as he can. I don't like to bring him down but sometimes I have no control over it... He has a lot of negative thoughts he has been struggling with... I mean who wouldn't. I wish he would talk to therapist. I don't mind being his outlet for his fears, worries, and what ever else he needs. However I think at times he needs another outlet so he doesn't have to worry about being a burden on me. For those of you who know Mike he is not a talker. He doesn't talk about his emotions he doesn't turn to others when he's upset. He's private and keeps to himself when it comes to others. I can't make him do anything he doesn't want to do but I can provide him the tools so they are there if or when he needs them. 

We bought a juicer and have been experimenting with it. I've read that juicing can be very beneficial for him. Wheat grass in particularity has a lot of health benefits for him. He doesn't mind drinking the not so pleasant concoctions I make him. Poor guy... he's a trooper. Our friend Kc is helping us get the organic fruits and vegetables to juice. It's hard for us to get to the store on a regular basis. Juicing requires a lot of fresh fruits and vegetables. We are thankful that Kc can help us out with that. Thanks Kc!

Wheat grass I juiced for Mike

Drinking his juice :)

I've been pushing myself to work out a little bit everyday. It's sad I have to push myself so hard some days but I feel better after I do it. When Ava is with us she likes to work out with me too. Here she is doing step aerobics while I am on the treadmill. She's adorable... I love that kid.

Ava & I exercising

As for my health I saw a new doctor for my symptoms. I went to an Ear, Nose, & Throat doctor. She is looking into my dizziness to see if this is something going on in my ears. Feels like just another direction. I have to have a test done at the end of January. We will see...

Recently Mike & I have been spending time with friends and family. This means a lot to us. We are so blessed and we really enjoy our time with them all. My mom and I went to a glass nite with my godmother a few weeks ago. We painted wine glasses. 

Paint Nite

Last week Ava had a Christmas Pageant at her school. My family and Mike's family all went.

Our families misbehaving! ; )

Ava at her Christmas Pageant

Ava's class singing

This past weekend Mike, Ava, myself and my parents went to the Stone Zoo to see the lights and animals. After that we stopped at Dunks and enjoyed some hot chocolate! It was a good time. My brother Charlie and his wife Meaghan, and Kc came over to watch the Pats game with us on Sunday. We ate tons of food and had some great laughs. Mike's mom Judy also came over and cooked us dinner. His brother Doug spent the night with us last night. Mike went to bed and Doug and I stayed up playing xbox, snacking, and watching Spice World (sorry Doug). Talk about a blast from the past. Good times! The other day all I wanted was a chocolate covered edible arrangement. I was having a rough day and posted it on facebook. Then my godmother Susie came to my rescue and surprised me with white chocolate covered pineapple! It was delicious... thank you Susie you have been great to us! Another friend of ours mother has been bringing us food as well. Thanks for thinking of us Laurie!  

Family Photo with Santa

Mike & I at the Stone Zoo

My Love

Ava & I having some hot chocolate

I want to thank the friends and strangers that still continue to donate to Mike's Fight. We are forever grateful for everyone's kindness and generosity. I wish I could personally thank everyone!

I'm off to snuggle with my husband now. Goodnight!

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Thanksgiving, treatments and more

First photo of Mike & I back in 20009

Mike & I had a great Thanksgiving. We went to my parents house and had Mike's family over too. It was nice to have everyone together. We played endless games of pool, joked around, and ate until we were sick. Great memories!

Mike has been feeling pretty good since his last treatment. Tomorrow marks treatment number 6. The doctor will be introducing a new drug into his treatment plan. Two weeks ago he referred to this part of the drug as a "game changer". We can only hope! As always (tonight) being the night before treatment Mike is anxious. He is also nervous about the new drug making him very sick. There is no way of knowing we just have to wait and see. Sometimes I think he psychologically makes himself feel worse the night before treatments. I completely understand it's not easy. He expects the worse every time. I wish he could be more positive because I know being positive is vital to him fighting his battle. Even though we are both living through the same nightmare, we are both experiencing two different experiences. Both of our minds are constantly racing with bad thoughts. They are so hard to shake. As always I wish I could take it all away...

He doesn't believe me but he is a very stubborn fighter. He is doing so well. He's hard on himself at times but who wouldn't be? I just remind him WE keep fighting. One of the hardest things of this battle is seeing the fear in his face. Certain looks come across his face every so often that are heart breaking. His stomach pain is hard to watch too. I hate every bit of this. Some days are so hard to get through. Mentally, physically, and emotionally... our lives feel like they are completely out of control. People often ask or say "how do you get through this?" or "I couldn't do what you do". If you were put in this situation how could you runaway or turn a blind eye. You do it because you have to. We fight because we refuse to have this disease define who we are as a couple and how our lives will turn out. 

I've had a lot of shit I've faced the past few years. A lot of shit that many people may never face in a life time... things I just can't talk about. I don't see myself as strong because of it. I see myself as a person who has faced a lot and keeps pushing through. Throwing my hands up in the air is simply not an option for me. It's a crappy way to become strong person... I didn't choose this lifestyle it choose me.  

My sleeping habits have still been horrible. My head has been miserable. My doctor is still doing tests on me. May think I have a gluten allergy... who knows... 

Mike & I have used some of our cancelled honeymoon money on ourselves. I got myself a Nikon D3200 camera. I have NO idea how to use it but am looking forward to having a new hobby. My friend Amanda who is a photographer has showed me some of the ropes but I still have a lot to learn! We also got a new bedroom set and a couch it's been nice to spoil ourselves a little bit!  

Mike & I had a great weekend with his daughter Ava. We got into the Christmas spirit! Ava's elf on the shelf, Twinkle came this weekend. She has been obsessed with it. We got our Christmas tree, we decorated the house and I put lights up outside! We're looking forward to Christmas. However Mike & I both agree that that the holidays just don't feel the same as they used to anymore. Time to get ready for tomorrow's treatment day...

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Twinkle Ava's new elf

Decorations

Christmas tree

Our lights

Elf on the shelf decoration (Ava's favorite)

Our new tree!




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Busy Weekend

A few weeks ago I saw a post from Stand Up 2 Cancer on their Facebook page. They were looking for cancer stories. I immediately jumped on that opportunity and shared Mike's fight. I didn't expect to hear anything back but I did! They highlighted Mike's story on their Facebook page. https://www.facebook.com/su2c/photos/a.412773010875.194370.16991655875/10152319431540876/?type=1

The post has over 21k likes, 700 comments and almost 1000 shares! I have been reading everyone's kind words. I have even had a few people message me to share their stories and offer support and advice. It truly is amazing. I also mentioned before that Life Chronicles is coming to film us. They will be coming in December. They also said they have friends at a local news station that wants to film them filming us to raise awareness about their non profit. It's crazy how many opportunity's that keep presenting itself to us. I continue to reach out to people when I can and I won't give up. It's the least I can do to raise awareness to this disease and Mike's Fight.

On Friday I went to an infectious disease specialist. It was one of my worst experiences ever with a doctor. She was so rude. She told me there was nothing wrong with me. She said I didn't have Lyme disease or any infectious diseases based off of her looking at me and her own opinions. During the appointment Mike started to faint because he wasn't feeling well so he laid down. Later on he said it works him up when he hears doctors talk to me that way. She had almost no sympathy and proceeded to tell me that my CONSTANT blurry vision and strange symptoms were "in my head". She said it was stress. She didn't call for any tests at all and sent me on my way. I was in tears by the time I walked out. Mike did his best to cheer me up but I felt like I had my back up against the wall. Feels like I have no where else to turn for help with my symptoms (8 months later... no answers to my health). I am still seeing a naturopath...

1. Naturopathy or naturopathic medicine is a form of alternative medicine employing a wide array of "natural" treatments, including homeopathy, herbalism, and acupuncture, as well as diet and lifestyle counseling.

She has been working with me and my symptoms. I do like her a lot and am hoping she can help me. We are still in the beginning stages of getting different tests done. Unfortunately with everything going on it's just one more thing added to the stress in our lives. It so hard to wake up each day. Mike and I refer to it as groundhog day. We both sleep in till 10am or some days later. This is hard for us because we used to be up early and off to work. We hardly ever slept in before. We both feel miserable almost every day which is why it is so hard to get out of bed. Sometimes leaving the house makes us anxious. Our minds go in circles with "am I going to feel okay?" "what if I don't feel well?" It just sucks! 

After we left the doctors we went to the DMV to change my name on my license... got there at 12:30pm annnnndddddd they had closed at 12:00pm... typical it was just enough to set me off again. As I stood there crying outside the truck I was searching for the keys that were "lost" in my massive purse. Mike looked at me and said don't cry were going to get your license done and you can't cry for your picture. It was sweet of him. He always has the nicest things to say and is always looking out for me. One of the many reasons why I love him so much! We then drove to the Epping DMV because they were open later. I got my license and I am officially Stephanie Howell! Don't worry mom and dad i'll still always be a Lanza ; ) 

Silly things like the the doctor being rude, the DMV not being open, struggling to get Mike's prescriptions refilled, our Comcast cable going in and out, our toilet braking and our pipes backing up are the very frustrating things that seem to happen every day to every one! However with our current battle it feels a lot more stressful. It's always something. It often feels like the the straw the broke the camels back. Emotionally its so exhausting. Even with all these dumb little things and our health we still drag ourselves out of bed and try to make the best of each day. We have each other, we have our family and we have our friends. 

Mike & I at the Bruins Game

Mike & I had a very busy weekend! On Saturday night we got to attend the Bruins game against the Canadians and on Sunday we got to go to the Patriots game with my family. When Mike was first in the hospital at St. Elizabeth's he had a roommate in his hospital room. We got to know him well over the painful 3 days. He gave the Bruins tickets to us as a wedding gift (thanks again!) It was very kind of him. Mike and I were anxious about our busy weekend. Since Mike had treatment on Monday we were not sure how he would be feeling by the weekend. I myself still am not feeling well so I had my own worries too. However we had a great weekend! Mike & I both had our "sick moments" but over all we had a great time at both games. I was really happy to attend the Pats game with my brother, sister in law and dad. It was so great to have family time like that. Mike really enjoys spending time with them too. He says my family feels like his own. It's so nice to hear that. 

My brothers seats were better than ours. They were in the end zone so at half time he switched seats with us. We both enjoyed sitting in the second row! After attending so many games in Mike's season ticket seats it was really neat to be right in the front. It was a whole new game experience. The players were so close you could yell to them. Thanks again Charlie!

Mike & I at the Patriots Game

Tailgating with the Family!

By Sunday night we were both exhausted and our emotions had caught up with us. We held each other and cried for a while. We asked our typical questions like why us? What did we do do deserve this? How much time do we have? At times all the hope and positively we try to live with each day seems to be pushed to the side. We're only human... it happens. Mike told me something after this conversation that really stuck with me. He said, "I didn't find the love of my life to marry her then leave her alone." It still puts me in tears to think about it. It's just so hard to hear and even harder to think about. Mike is the most amazing person I have ever met in my life. He always puts his "girls" first and takes care of us on every level. It's so hard to see him ill. He has crippling stomach pain every day. Some days are worse than others. Sometimes he bleeds when using the bathroom in which the doctor is aware of. The bleeding really scares me. He also takes a concoction of pills that make him nauseous to take all at once. He's a fighter though!

His daughter Ava has been doing so well with everything going on. She's beautiful, strong, and so brave. She loves her Daddy so much. Sometimes when Ava and I are alone we talk about Dad. Today I was explaining to her about how the Life Chronicles non profit would be coming to our home to film us with dad and our families. I wanted her to understand why they were coming and what they would be doing. I told her it was for us to have memories on camera with dad. Her first response was, "In case dad dies?" ..... I'm sure for anyone who reads this had the same expression on their face as I did. I paused, collected my self and said yes in case that did happen but it didn't mean it would. Again I remind you... she's only 7. She's the most beautiful child I have ever met inside and out. I love her so much and I am so happy she is in my life. My family needs a miracle. No one should have to die from this horrid disease...Ava needs her daddy and I need my husband and family. 

Ava & I

My Buddy

My family a few years ago

As I realize the time right now 12:20am I'm pushing myself to go to sleep. I still struggle to sleep at night. Mike goes to bed early and I sit downstairs in our quiet home and try to keep my mind busy. Sometimes I read information about his disease, other times I clean or talk with some of the other friends/caregivers I have met that are going through similar situations, I watch all my shows on my DVR and then eventually force myself to go up to bed. Night time is the hardest time for me. I don't like being alone, I don't want to go sleep, and I don't wake up and face reality again...

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