Fighting every single day

Playing with the exam chair at DF.
It was funnier in person because Mike was
pretty high off the ground.

This past Thursday Mike completed his 4th cycle of Gemabraxane and he now has a week off. Overall, Mike has completed 30 chemotherapy treatments. He will continue to have treatments for the rest of his life or until there is a cure for Pancreatic cancer. However, for now he will enjoy is week off and won't have treatment again until November 5th. When he was on his first treatment, Folfirinox he used to have two weeks off in between treatments. It was nice having the time off. Mike had more time to recover in between treatments and we didn't have to trek out to Boston once a week. Now that he has three weeks on and one week off we look forward to the rare weeks off. Even though it's his week off it doesn't give us a break from cancer and its side effects. He has had low energy, fatigue, depression and so on. Our work days are sometimes shorter and we spend more time at home resting.




Mike's rash from the side
effects of treatment

Every few treatments he has been developing a rash on his hands and arm. It's bright red, itches and burns. His oncologist is aware of it... he is not sure why it happens. I think it's obvious its from his chemo. He could see a dermatologist but Mike doesn't want another doctor appointment and his oncologist agrees that it's not bothersome enough to do anything right now. We've tried some home remedies, creams and medication but nothing seems to soothe it. It just has to take it's course until it goes away.

One of Mike's biggest struggles with this new treatment was with the side effect of losing his hair. Even though he has been shaving his head since he was in his twenties he didn't want to loose his eyebrows. We joke with new people that he isn't bald from treatment and that he was bald before cancer. Mike never wanted to lose his eyebrows because he thinks it makes him look "sick". People often tell us how good he looks and that he doesn't look like he has cancer. Now that his eyebrows have lighten and thinned out it makes him feel worse and I believe more depressed. He doesn't want me to take photos of him. I always overkill every situation and take lots photos of everything (I can thank my mom for that)! He tells me no more photos. I know he hates seeing himself without his eyebrows. I know he doesn't believe me when I tell him but I think he looks handsome with his thinner eyebrows. He will always be my handsome man no matter what!

Every once in a while when Mike and I are out working someone who hasn't seen him in a while stops him in his tracks with the familiar phrases such as "you don't look well..." "have you been sick?" or "you look really sick today!". When you know someone is sick with cancer these are the worst things you can say to them. Everyday is a battle sometimes getting out of bed and going to work is a small victory. To be told you "look sick" when you are terminally ill is a constant reminder and makes your stomach turn. If someone doesn't know he is sick when they say these things Mike then lets them know he has cancer. The next dreadful question is what do you have and I always cringe when he says pancreatic cancer. In that moment the person either knows exactly what that disease means and they don't know what to say next or they have no idea what the incurable disease means and they wish him to get well "soon". We can't get mad or upset with people who don't know what the disease is or that he's even sick. All we can do is take a breath and try to educate them. There are days when Mike feels okay and people will tell him he doesn't look well and I get angry. I want to protect him. I can read him like a book I know when something is wrong. I can see the pain in his eyes when he is upset or he hears something depressing. It could take him from a good mood to a depressed mood in just moments that can linger over him for hours on end. People often ask me how do I do it? I hate it when they say they couldn't handle my life if they were in my shoes. I do what I do because I love my husband. It's not my place to walk away or not handle the situation I have been handed. Life is full of challenges. We have been handed a shitty hand in life but we have to fight and be strong for each other. We are not religious people. Some people don't understand our choice. However, we believe in each other and are thankful for all those people out there that think of us and pray for us everyday.

Mike will often say he wishes he could have nothing wrong with him even if it was just for an hour. No pain, no nausea, no stomach problems, no achy legs, no rashes, no hair loss, no sadness, no fears, no worries. It's hard to hear him say it. If I could trade back and forth with him and fight the battle physically with him I would in a heartbeat. I wish I could give his body and mind the break he deserves. As his spouse and caregiver I fight a battle of my own every moment of every day on top of my own struggles with my health. Good health is something so many of us take for granted. I can't imagine how he feels and what goes through his mind. It's such a cruel way to have to live a life of being diagnosed with an incurable disease. I will never understand it... Some days I wish we could just wake up from his horrible nightmare.

Mike and I were able to get out this weekend and have some fun. We went to a haunted woods walk on Saturday night and then we went to the Patriots game on Sunday. Mike's body is paying for it now. He has been exhausted and sore ever since. However he is happy he was able to get out and have some fun.


Mike & I tailgating

Having fun with friends and family!

I recently was able to enjoy a spa day at a local spa that was donated to me. I got a manicure, pedicure, and massage and it was desperately needed. I struggled with feeling guilty for going out and getting pampered even though I know it's needed. It is not easy for me to get out of the house without Mike. People are always telling me I need to do things for myself. I know that I do I get it. I also know that I need and want to be there for my husband and I make sacrifices to do so. I know he doesn't like to be alone at home. We truly enjoy being together. We spend 24/7 together and I wouldn't have it any other way. He's my best friend. I don't want to be told what I have to do because no one knows what I am going through and sometimes I just need people to understand that.

November is pancreatic cancer awareness month...

I am always trying to find ways to raise awareness for Pancreatic Cancer such as through my blog, through local pancreatic cancer research walks and other events. When I found this company I was excited. Their mission is to help others be brave during their difficult times as well as allow others to purchase jewelry and make a donation to a fundraiser of their choice. Bravery and strength is something that I have had to learn the hard way. I hope my husband and I can inspire others to BE BRAVE!

There are times in all of our lives where we need to be brave – whether for ourselves, for our family, for our friends, or even for a complete stranger. Bravelet bracelets are more than just something to wear on your wrist. They are a symbol of hope, strength and courage. They are designed to help you be brave in the toughest of times.

The triangle is the strongest geometric shape. Bravelet bracelets are worn to help you be strong and brave in tough situations. Therefore, Bravelet and triangles are a perfect pair. The triangle is incorporated not only in the Bravelets logo, but also in every item’s single design. Plain and simple, the triangle represents strength, just like Bravelet.

Each Bravelet that is purchased through this site donates $10 to Mike's Fight. To purchase a Bravelet Click Here

I recently posted this on my facebook that I wanted to share here too.

"As October comes and goes I see a lot of people getting upset about pink breast cancer ribbons everywhere. They're not necessarily mad about the cancer itself more so mad at the lack of purple ribbons plastered everywhere for pancreatic cancer. I myself feel the same struggles with this fight. We see pink ribbons for breast cancer everywhere in October but not purple ribbons for pancreatic cancer awareness in November. I was researching cancer statistics and got a better understanding as to why pink breast cancer stuff is everywhere! Here is what I found... an estimated 234,190 people will be diagnosed with breast cancer this year and estimated 40,730 will die from it. Breast cancer is the most diagnosed cancer of them all. Pancreatic cancer has an estimated 48,960 people that will be diagnosed this year and 40,560 will die. About the same death toll in a year as breast cancer. However, there isn't as much funding or research for pancreatic cancer as there is for breast cancer. Even though pancreatic cancer is one of the deadliest... It's not the most common either. Breast cancer the most common therefore most funded and commercialized. I hate it as much as everyone else. My husband and many others deserve a better chance! Breast cancer awareness didn't get big on its own... People advocated for it and that is what we need to do for pancreatic cancer. Most of us never heard of it until our loved ones were diagnosed and that is the sad truth we face everyday. We have to educate others know it, fight it, end it! Go Purple!!"

 

This is the site I used to find those statistics if you scroll down and look at the statistics they are defiantly an eye opener... http://www.cancer.gov/types/common-cancers

After what I thought would be a short blog tonight turned into a pretty long one! I am off to bed. Thank you for reading!

Donate to Mike's Fight... all donations go directly to Mike & I. Click Here

Each Bravelet that is purchased through this site donates $10 to Mike's Fight. To purchase a Bravelet Click Here

Cycle 4 and more

Wow! The last few weeks have been very busy! Today we are at Dana Farber for Mike's treatment and I finally have some time to write a post. Two weeks ago Mike finished this 3rd cycle of Gemabraxane and is starting his 4th cycle today. Last week was his week off from treatment. He has treatment 3 weeks on then one week off. As long as all of his labs come back at appropriate levels, he is able to get treatment. So far with this new treatment we have only had to skip one treatment due to his platelets being too low. I always have a little bit of fear going into each treatment knowing that we could be sent home. We like it when things are on schedule and hate the unpleasant surprises. Cancer always keeps you in the unknown.

Luckily his levels were good and he is getting treatment now.

Two weeks ago on September 24th, I was getting off the elevator at Dana Farber and was in deep thought feeling overwhelmed. I was looking around at all the other patients, watching young children and toddlers being pushed by in strollers with bald heads and tubes coming from their noses. Mike and I always struggle when we see a young child that is sick. It's so heart wrenching and I was feeling pretty down. I was walking towards the pharmacy and I crossed paths with another couple. I was in such a trance that we did the awkward excuse me, go ahead no you can go dance. I then got in line for the pharmacy. A woman touched me on the shoulder and said, "excuse me, are you Stephanie?" I looked around for a familiar face. In my head I was searching for the answer of who this woman was but I didn't know. I told her yes I am Stephanie. She paused and said, "I read your blog!" With tears in her eyes she thanked me for writing and said that it has really helped her. She told me her husband was a pancreatic patient too. I thanked her and she walked away. After she left I lifted my shoulders and stood a little taller. I had tears in my eyes. I am happy to be able to make a difference. That was one of the reasons I started this blog. I have no idea how she found it but it made me feel good. After I picked up Mike's prescription I went back to his room and told him what happened. He teased me for the rest of the day and called me a "celebrity blogger". Thank you to the woman who recognized me. You made my day and gave me reassurance that what I am doing is making a difference. I'm sure we will see each other again some day around Dana.

September 26th we participated in the 2015 New England Pancreatic Cancer Research Walk through the Lustgarten foundation. Our team raised over $3,200 and the overall walk raised more than $150,000 to go towards Pancreatic Cancer research. It was a beautiful day out and we all dressed up in our purple gear! After the walk we all went out to lunch at Salvatore's. Mike was proud of himself because he had treatment two days before the walk and he was able to walk the full 3 miles. It was a lot of fun. The walk was along the beach. There was a lot of people there. It looked like a sea of purple coming down the street.  

2015 New England Pancreatic Cancer Research Walk "Mike's Fight"

Let's DO This!

We GOT This!

Family

Me & Miss Ava

On October 3rd we held the 2nd Annual Michael Howell Softball Tournament. We started bright and early at 7 am we were down at the field setting up. It was raining out and the wind was whipping us around. As the day went on the rain let up and eventually stopped. We had 15 softball teams attend. They started playing at 8am and the championship game ended at 9pm. The winning team this year was KLN Fatman.

Champions!

A lot of people kept coming up to me and saying how good Mike looked. Almost as if he wasn't sick at all. He looked like his normal self. Every once in a while I would look over at him and have to catch my breath because I was in awe with how well he was doing. People don't realize that every morning we wake up we don't now what that day will bring. It's hard to plan anything beyond the hour because he doesn't know how he's going to feel. So when we have a day where he feels good the majority of the day it's a good day. Last year's tournament Mike had just started chemo and he was very sick. He wasn't able to make most of the event and was very upset about it. It was so nice to have him there not only enjoying it but also running the tournament.

Thank you to all the people who donated items, raffle items, their time, came down to support, bought raffle tickets or food, and those who volunteered their man power. Thanks to all that came out and braved the weather with us to make this event happen.

Thanks to our helpers...
Mark & Cindy Lanza
Judy Howell
Ken & Gail Howell
Melanie Adamo
Michelle Carmody
Sue Comeau
Kristin Perry
John Proia
Derek Gogas
Matt Daniels
Vince
and many more!

Tournament

Mike & His Dad

Mike, Me, & Melanie

We couldn't do it all without the help from everyone. Mike and I got home later that night and unpacked our cars. We sat in the kitchen talking about how the overall day went and how helpful everyone was. I started to cry. I get so overwhelmed with all the support we are always receiving. This illness has taken so much from us but it has also shown us how much people care about Mike, myself, and my family. Mike often says it has restored his faith in humanity. Sometimes we feel like we are constantly accepting and asking for help from others. It's not easy but we need the help right now. Our lives have been opened up for the world to look in on. Our journey is an open book for others to see and learn from.

Our Wedding

Sunday, October 4th was Mike and I's 1st Anniversary. My parents surprised us with a night stay in the hotel we got married at in the exact room we stayed in on our wedding night. Which was at the Union Bluff Meeting House in York, ME. Thank you mom and dad! On Sunday morning I surprised Mike with his anniversary gift which was zip-lining. We headed up to Kittery, ME to Zip-line at Take Flight. It was a zip line course that had 6 zip lines anywhere from 75-400 ft long. There were also obstacles such as climbing up a 50 ft telephone type pole to get to the top. There was a tight rope walk, hanging ladder and a very wobbly bridge that was put together with wood and ropes. I went first and he came after. Mike struggled on the first climb to the top. It was very strenuous. The instructors Maddie and Travis were great! We had let them know ahead of time that Mike was a cancer patient. Sometimes Mike likes people to know so he isn't so hard on himself when he struggles and others don't know why. He always has me tell the person because he doesn't like to. As Mike was climbing to the top I turned into a sap and tears started rolling down my face. I was just so proud of him. He's a one year pancreatic cancer survivor patient and here he was climbing 50 feet into the air. A year ago now I wasn't so sure that he would still be here with us. The statistics for his disease told us otherwise. To be able to spend our one year anniversary doing something we wanted and staying where we got married meant more to me then anyone would ever know.

Mike was able to do 5 out of the 6 zip lines. The last one had a difficult obstacle to get to. It was the bridge. You had to step on small wooden steps hung by ropes with spaces in between each step. Me, with my sprained ankle I was surprised that I even made it across. Mike tried but after two steps his legs gave out on him and he fell. The instructors tried to get him back up but he had decided that he had had enough and that was okay. He dangled 30 feet from the air and thought it was really funny. He said hanging by his harness was almost as fun as the zip-lining. They belayed him down to the ground and I finished the last zip-line on my own.

Me Zip-Lining

Mike Zip-Lining

Hanging out in the trees

After that we went to check into our hotel. The hotel gave us complementary breakfast and we also had received $100 towards food at their restaurant. We got ready and went out to dinner. We ordered a ton of food Mike even got a sandwich to go for back in the hotel. I had forgotten to take out our wedding cake so we ended up going to Clara's cupcakes to make up for it. After dinner we relaxed in our ginormous hotel room and snuggled up and watched tv. It was a nice relaxing night. We were so sore from standing at he tournament and all the climbing when we zip-lined. It was nice to have a night in. In the morning we went out to breakfast then I convinced Mike to do a little shopping before we headed home. By the time we got home we felt like we could sleep forever but our house was trashed from bringing in all the boxes from the tournament. We cleaned up a little ran some errands and then crashed!

Anniversary Dinner

View from our Hotel

Mike is still getting treatment he's snoozing away. Now it's time for me to catch up on Netflix!

Mike getting his snooze on during treatment.

Donate to Mike's Fight... all donations go directly to Mike & I. Click Here

Each Bravelet that is purchased through this site donates $10 to Mike's Fight.
To purchase a Bravelet Click Here