Thankful



We are so thankful with how our holidays went. Mike looked great he felt great he was his normal self laughing, joking and enjoying himself. It felt so good I almost forgot all about cancer. Ava was spoiled as always and she enjoyed the holidays as well. As long as Mike and Ava are happy I'm happy. We couldn't have asked for a better time with our families (aside from being cancer free). Thank you everyone for your warm holiday wishes!



Ava on Christmas Morning



Silly Christmas Sweaters!

My Family

Mike's Family

Mike's Family

Mike's been doing well. However he has had a new troubling side effect. Due to the toxicity from chemo treatments his nails have been taking quite the hit. They started off changing colors about a month ago. I have photos I could share but they are so gruesome! Just incase any of you are eating while reading this or plan to eat within the next 24 hours I'll spare you your loss of appetite. All jokes aside... its pretty bad. They turned a bluish black color similar to when you hit your nail plate badly and it changes color. They started growing in a deformed way and lifted up. After they lifted it created a breeding ground for bacteria. They soon became infected which we should have known sooner but didn't think much of it. They had a foul smell, with gunk coming out. It was getting painful for him and soaking in Epsom salt didn't seem to be helping. I sent some photos to his doctors and they said it was defiantly infected and prescribed him an antibiotic. I felt awful I wish we had notified the doctor sooner...

Last Thursday Mike had his 37th treatment... 37 it's so hard to believe he's had 37 treatments when most only get the chance to have a handful of treatments. It's been 16 months since diagnosis, or 480 days, 11,520 hours, 691,200 minutes... there have been many times we have had to take this journey literally minute by minute to get through. I'm thankful for the time we have gotten, the opportunities we have experienced. I am proud of the fight he has put up. Most people say not to take things for granted, to live your life to the fullest and to have no regrets because we're never promised to see another day and we don't know when it will be our last. It's a great philosophy to live by... but what about those who are deemed terminally ill? They have to live with knowing how they will die... but not exactly when. It's extremely hard living like this...

Thursday was Ava's first time ever coming to treatment with us. She was on school vacation and we thought it would be a good time for to come in with us. This way she wouldn't miss any school. We prepped her for the things she may see... sick people, wheelchairs, masks, even sick children. She still wanted to come. I packed her a bag full of games, activities and goodies. I had a back pocket full of ideas and activities just incase it was too much for her to handle so that I could be there for her and Mike. It was new years eve which resulted in it being extremely quiet at the hospital. I had never seen it so quiet! Of course we went in style. We all wore our Mike's Fight shirts and Ava and I decked ourselves out in purple accessories. Unfortunately a lot of my back pocket ideas were no good. Many of the places at the hospital were closed due to the holiday... arts and craft room, gift shop, food court, etc. were all closed. There were not many people around to see which maybe was a good thing for her first time. She is a very sensitive and emotional kid. Seeing sick people really sticks in her mind and worries her. She has a heart of gold and is always concerned about others wellbeing... (hmm sounds familiar... ; ] ). Since it was a holiday the doctors were all out of the office and our NP was the only doctor on the floor so we had to wait for a while to get in. When we finally got in to see the doctor we talked about Mike's nails. She looked at them and said right away many of them were no longer attached and would fall off. I could see the disappointment on Mike's face. She said the abraxane chemo was causing the nail changes. She decided to hold back on the abraxane and just treat him with gemzar so the nails could heal. We were not crazy about this idea because the last few weeks they have dose reduced Mike's chemo drugs due to his low platelets and blood counts. Now they wee taking away a drug... It's tough to know the drugs are working but we keep dose reducing and holding back. We have to remind ourselves that this isn't a sprint but a marathon. If we keep pushing him beyond his limits his body will continue to break down too much.

Mike's Fight Army


 

Ava on the look out for Mike's nurse



 




Such a precious moment






Garden Room

After his appointment we waited for his infusion. After he got his premeds I took Ava around the hospital. I showed her the indoor garden, we walked through the tunnels to Brigham and Women's I showed her were dad and I stayed when he was hospitalized, we hit up the café and Au Bon Pain for cookies and milk. On the way back from the Brigham we stopped by DF's chapel and wrote down prayers in the prayer box. We headed back to Mike's room and watched a movie on my tablet with our cookies and milk. His nurse (our normal one was off that day) kept complimenting us on how well Ava was behaved and how patient she was. I blew up medical gloves and Ava gave them manicures, jewelry, and tattoos. It was so cute. Mike finished early due to the treatment being reduced. In the car on the way home Ava was very chatty. She was asking questions about dad's cancer, how things worked and why things happen. We had a nice talk on the way home! At one point she said, "Mamma not many kids would say this but I liked going to treatment! I want to go back again." Ahh she so much wiser beyond her years! It was so nice to hear that. It meant A LOT to Mike for her to come into treatment with us and see what he goes through. It was another opportunity for her be involved with Mike's treatment, let her learn and spend time with us. She already asked when can she come again!


Ava the nail designer!



Later that night Mike was sitting on the couch cleaning his nails. I was looking at him and he just seemed exhausted. As he stared at his nails with such disappointment I told him it was just another symptom that really friggan sucked and that we would tend to it and get through it just like the rest of the symptoms. I told him that he looked defeated... that word got to him and he grabbed me with a flood of emotions. It was a moment that had not happened in a while. It hurt, it was painful, and I myself felt defeated too...

Though it seems like he wanted to give up over fingernails it was much more than that... the symptoms and side effect list never stops... nausea, bowel troubles, EXTREME daily fatigue, terrible rashes, numbness and tingling in hands and feet, dizziness, depression, anxiety, panic attacks out of no where, finger nails that fall off, piercing pain in his legs, weakness, no immune system to fight germs, stomach pain, cancer pain, bowel obstructions, vomiting, diarrhea, mouth sores, loss of appetite, back pain, night sweats, day sweats, hot flashes, chemo brain, brain fog, hair loss, did I mention fatigue? If it's not one thing it's another. If your having a good day it usually doesn't last... Sometimes we have to take it minute by minute to get us through. We coined a new phrase called "the wall". Every day he hits his "wall". Where he becomes so exhausted that he needs to lay down and nap. Sometimes a quick nap helps him feel refreshed other times he spends the afternoon into the night sleeping on and off.

One thing I wanted to address that some people don't realize or possibly forget about Mike's disease is that he is terminal. Terminal means a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer. Pancreatic Cancer has NO cure. His treatments don't end unless he wants them to or he becomes too ill to no longer treatment. He isn't eligible for surgery, there are no transplants, there are limited treatments to help him have a better quality and quantity of life. We hope for a breakthrough every day we pray for a miracle that something will save him and that is what we hold onto... is hope.

Today I have noticed his nails healing and looking a lot better. They do not look as infected, the don't smell much at all, and I think they have better coloring. Hopefully we are on the way up and will be back to having yet another symptom in the past!

Lately after talking about it we have decided to start "living" more. We have a list of things "bucket list" that we have wanted and now want to accomplish. Without really knowing it I guess we are off to a new start in 2016. It is time to reward ourselves because we know that we deserve it... more to come ; )

Believe it or not these post take a lot out of me! Sometimes I take hours writing them, reading them back, searching for errors. trying to correct my mistakes. This blog has been so helpful in sharing our journey and updating close family, friends and even strangers! I enjoy it, it gives me meaning and I know so many people out there that follow our story. My blog has had over 36,000 people view my blog. It is incredible! I am so thankful that Mike has allowed me to share his/our personal journey through this blog. Thank you Mike I LOVE YOU forever and always!

One last thing... recently Mike and I have lost our help with our business Perfect View Window Cleaning. We are looking for a part time person 2-3 days a week to clean windows. Flexible hours, must be able to travel. We will provide working supplies. If you are interested or know someone who would be please email us at mike.stephanie.howell@gmail.com Thank you!

Goodnight =]

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