Good news for now!

Mike had his first CT scan last Tuesday to see how his cancer was responding to his chemotherapy treatments. Mike and I have both been very anxious, scared, and nervous about today's results. It has kept me up many of nights, feeling very anxious. I was fighting back tears in the waiting room while we waited to be called in. Our legs were shaking and I'm sure both our faces had panic written all over them.

Mike during chemo

After meeting with his oncologist we received GOOD news! There was a decrease in the tumor on the tail of Mike's pancreas, decreased (no more) fluid in his stomach, no new growths of cancer or lesions in his stomach, his tumor markers are going down and his liver, gallbladder, spleen, glands, lymph nodes, and kidneys are all acting and look normal. Finally I felt like I could breathe. We both said before the appointment that we didn't think we could handle any more bad news. For me I felt a lot of relief. I was happy to hear things are working. After meeting with the doctor we went over to wait for him to be called in for his chemo treatment number 5. Mike's face looked like he was still feeling down. I asked him what was wrong and if he was happy with his results. His exact words were, "I guess so... but I still have cancer. Cancer is still ruining my life." It was hard to hear. Here I was so happy to finally hear that the chemo was working. On the other hand I felt like I was trying to coach him to understand we had gotten good news. Mike knows it was good news but he still just wishes the cancer could be all gone... we all do. However after meeting with his oncologist and him telling us that he was very optimistic that his treatments were working was everything I needed to hear right now. I feel a little recharged and hopeful. Sometimes it's hard to be hopeful when your facing a disease with horrible odds. Yes my husband still has cancer but he is fighting as hard as he can for his girls and I love him so much!

Mike's Fight

Purple for a Purpose!

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World Pancreatic Cancer Day & First Scan

Pancreatic Cancer Awareness Day!

Today is the first annual World Pancreatic Cancer Awareness Day! It was great to see family and friends posting photos on my facebook of them wearing purple and supporting the cause.. Thank You! We have met some pretty amazing people that are involved with his disease and determined to help raise money, awareness and find a cure. We love our new friends and all of the support they have given us! Shout out to Amy & Brian Nelson, Amiee Sherman and Pamela Acosta Marquardt who is the founder of the Pancreatic Cancer Action Network! I got to speak to Pamela myself which was pretty amazing! 

Wearing my purple for a purpose at work!

On Tuesday Mike had his first CT scan to see if the chemotherapy has been working. Mike's dad went into Boston with us. We had to get there 90 minutes before his scan so he could drink certain fluids with medicine in it. This would help line his stomach & intestines for when they did the scans. He also had contrast put into his port to help the scan images. Mike and I have been terrified of this scan... We had to wait until he completed 4 treatments which was 8 long weeks. This scan has left my heart racing and both of us very anxious for days now. We will find out on Monday what the pathologist reports says. We decided to go to this appointment on alone. We have been openly sharing Mike's Fight with family and friends but we want to go to big appointments like this on our own. We need time to fully absorb the information we receive in private before we can share with our family, friends and so on. We feel like we are having flashbacks to when we waited the first two weeks for his diagnosis... I've been trying to prepare myself for this appointment. If the scan comes back that the chemo is not working we have other options... but other options scare me because those options could run out one day. If the scan comes back that the chemo is working then we will be able to breath easy for a while. Mike's oncologist says he thinks the chemo is working... but the scan will have to prove that for us. 

Mike's Fight

Mike has been having a lot of pain since his last treatment. We are worried things are not as good as the doctor is thinking. He had been doing better with treatment 2 and 3. Since his last chemo treatment (number 4) he has defiantly felt worse. He often complains about his head feeling "off" (I know that feeling all to well). He looks off and he's been more fatigued than usual too. He has battled a few fevers as well. For those of you who don't know cancer patients are suppose to go to the hospital if they get a fever of 100.4. They are at greater risks of infection due to their low white blood cells. Every time his temp even goes up a little I panic on the inside. His immune system is so fragile that getting sick could really compromise his health. His oncologist said anyone around him should have their flu shot and if anyone is sick to not come around. Ava had a cold on Monday so Mike wore a mask and kept his distance. It's hard for her not to snuggle with daddy when she's sick but she understands she does not want him to go to the hospital. His pain is my biggest concern. This awful disease leaves me thinking we never know when or if things could turn for the worse. I haven't been sleeping well. Some nights I am up until 1 or 2 in the morning. Mike has been going to bed around 8 or 9. Those nights that I am up alone are the worst. It's a scary reminder of what the future could be like... alone. I hate to say it but it scares me. I just can't imagine being without him... we refuse to let it be a possibility in our minds. We have to stay positive and hope for the best. He tells me every once in a while that he will be the first person to beat it. God I hope he's right.

My Perfect View ; )

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Mini Honeymoon

Mike & I had an awesome mini honeymoon away to the white mountains. We stayed at a really cool hotel called Adventure Suites . They are definitely worth checking out. We stayed in the Showtime room. It has a 10 foot theater movie screen, stadium seating, fire place, popcorn machine, bar, back porch that viewed the mountains and more! We also had our own heart shaped jacuzzi tub that we could watch TV from. Even the toilet was impressive! It opened, closed, and flushed on its own. It was heated and had options to wash and dry parts of your body that I was not aware of... haha When we first arrived at our room there was chocolate covered strawberries in the fridge compliments of the hotel! We also had a note from a women named Victoria from Tuckerman Brewery. She had read about us on this blog and left us a nice 12 pack of Tuckerman's beer, two drinking glasses and two tokens to have a free tour of the brewery. Thank you Victoria!!! People have been so kind to us. Complete strangers have been touched by our story and given us more than we could ever had imagined. Mike and I are truly blessed.

The first night we went out to dinner at one of our favorite restaurants in Jackson, named the Red Fox. Mike wasn't feeling well at this point so we headed home after dinner and picked out some movies to watch on our theater screen from our jacuzzi. Mike then headed to bed early and I stayed up watching movies for hours. I was bummed out that he was so exhausted but I understood why. The next morning we went off to shop at the outlets, went to Cathedral Ledge, we also went on our tour of Tuckerman's brewery. Mike and I were there alone so it was great for us. Was nice and relaxing. He watched me sample all four beers and hung out with the bartender. I may or may not have been a bit drunk come time of the tour... Needless to say I left with a giant bottle of great tasting local brewed beer. From there we went to get dairy queen and went on our own moose tour hunt. We had no luck and it was beginning to blizzard out so we headed back to the hotel. We watched another movie in the jacuzzi! I was off to bed early that night and Mike stayed up and watched a movie. Saturday morning a masseuse came in and we both got massages in our room. Which was GREAT! Then we packed up and headed home. Overall we had a great time! It was defiantly some much needed time alone together. We both look forward to doing more new and exciting things together. 

Mike & I at Tuckerman's Brewery

Mike & Stephanie at Cathedral Ledge

Me lounging and taking in the view

Mike hanging out in front of our room

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A day in the life

Mike getting acupuncture 

Mike started acupuncture today. He really seemed to like it so we are going to have him go once a week. The woman who does it is so kind. She's the newest addition to our team and we really like her. She says the acupuncture can do a lot for him. Such as supporting his immune system, taking away pain, helping with side effects such, as fatigue, nausea, anxiety, sleeping problems and more. He felt very relaxed afterwards which was good. I think it contributed to his overall tiredness today. Which she said it could. Next week the acupuncturist said she wants to work on me with some of my symptoms too. Fingers crossed.   

More acupuncture

Mike and I have something to look forward to. Since we couldn't go through with our honeymoon to Antigua we have decided to have many small honeymoons locally. Our first one is this Thursday-Saturday. We will be going to the adventure suites in North Conway. Mike and I usually go up to North Conway once or twice a year. Every time we drop by the Adventure Suites we talked about how much we wanted to stay in them one time. They are pretty pricey per a night but we didn't care. We booked a two night getaway. Hoping Mike will feel well. If not our room is a Showtime theme with a 10 foot TV screen and stadium seating. We can watch all the movies we want. There is also a hot tub that faces the TV pretty sweet I must say. We are also planning a road trip for the two of us. We decided that at the end of the month we would get in the truck and just drive with no destination in site. Were going to wing it stay at hotels along the way, sight see, and build memories. We are both pretty excited about it. 

Our hotel room this weekend at Adventure Suites

My mom & I at Paint Nite

Overall today was crap... Mike was wiped out from his chemo and slept most of the day. I felt pretty miserable all day too. My vision has been horrible and the crawling feelings in my head have been unbearable. At times I don't feel human... I close my eyes and just want to wake up from this awful nightmare... However, the sound of Mike's chemo pump is a constant reminder of our new lives. We don't feel like newlyweds... This stupid cancer yet again robbed us of that. After Mike went to bed I unintentionally tortured myself with our wedding photo videos that our photographer made for us... after a while I couldn't tell if I was crying because I was happy, sad, or angry. I'm sure it was a little of everything. I feel so exhausted pretty much every day. My body physically is tired. I can't even imagine how Mike's body feels : ( I try and push myself to work out on our treadmill we have in our basement every day or so but even that at times is too much to do. I always joked about how I would go crazy if I were a stay at home mom or worked from home. Well I was right it's true I do go crazy. I'm constantly picking up the house and cleaning things. At times it drives Mike nutty because it's like I am a tornado whipping through the house. Usually I'm trying to clean up one mess while I make another. I just can't sit still. I often feel so lazy and eat out of boredom, which is taking a toll on my body. I no longer have breakfast, lunch or dinner at normal times. Some days I'm lucky if I eat one meal at a normal time. I'm working on it... I am learning to do things for myself as well. When he was first diagnosed I never wanted to leave his side. The poor guy couldn't even go the bathroom with out me popping my head in to check on him. Now I feel comfortable enough to stray from the house to do things that make me feel good and "human like". I go to dinner with friends and I've gone to a Paint Nite with my mom. Who for the record is not great at painting boats but made me laugh pretty hard for the first time in a long time, god I love her! = )


I used to get anxious around hospitals, needles and sick people. I was one of those people that wouldn't put my bag down in a hospital, I wouldn't sit down on anything, I had to wash my hands every time I touched something, when I got home all my clothes came off immediately and I jumped right in the shower.  Now I could careless. I spread my junk out all over his infusion room and make myself comfortable. I'm not afraid to see the needle go through his skin and into his port, I'm not scared to watch his blood drawn through his port or see his chemo go into his veins. I now flush and take his pump off and inject him with a shot. I don't freak out when something doesn't look right. I give it time. I'm better at reading his body for signs of when something isn't right and I don't panic like I used to. I've also learned how to be very patient. Everything takes time in the medical world. I get it, I'm used to it. I'm patient at the hospital but outside the hospital is a different story.

Even with all this free time in between appointments I still feel like I have so much to do. I have all types of errands that just never seem to get done. When Mike feels good we go to work. When he doesn't feel well we stay home and rest. It feels like my body is aligned with his some days. His worse days feel worse for me too. At times I feel like a rag doll thrown around in different directions. I've organized all his medical papers in a binder...I typed up all of his family medical history for all the doctors he sees... I created an excel sheet for his meds so we could keep track and we fill his am/pm pill container once a week... I get him refills of his meds when he's low...I get him all the foods he needs... I push him to eat... I listen to his fears and I hold him when he breaks down... I make him as comfortable as I can... I'm helping to run our two businesses together so we don't lose our livelihood... I set up all his appointments and bring him to and from... I help him figure 

out the future for Ava and I if he's not here with us.. I do my best to shield Ava from it all... At the end of the day I'm exhausted I can't hold it together I literally fall to the ground and cry and scream... I've cried more tears than I ever could imagine one person could have... I get anxious out of no where and struggle to calm myself down. Everyone keeps telling me I'm so strong but wouldn't anyone do all these things for someone they love? At times it makes you you not want to push through life when bad things always happen. Mike and I haven't always had it easy even before his diagnosis. Looking back those dumb annoying things that never went right are all so petty to this. Cancer was the icing on the cake that we never wanted. No one or family should ever have to go through this. And to think about all the small things we sweat about in life... it really puts everything into perspective. 

I keep myself strong around Mike but when he's sleeping at night I sometimes fall apart. Tonight was one of those nights and that's okay. The picture I decided to post of me above is a bit much for me to share but my face says it all... I made a choice to write this blog so I could share our journey with others...so here it is straight from the heart no photo shop and no sugar coating... sometimes this is how I feel and I just need to let it out...

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Wedding Photos

Wedding photos :) from our amazing photographer! Rebecca Garone

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A Day of Fun then Back to Reality

Sunday November 2nd Mike was able to attend his first Patriots game of the year. = ] Mike has had season tickets for the past 12+ years. Depending on the years schedule we usually go to 4-5 games a year. Opening day this year we were at Dana Farber getting his pump taken off.  After missing the Patriots home opener, I learned quickly how to take his pump off at home. 

Mike and I had a great time at the game even with the cold and snow! It was a long day and I wasn't sure if either of us would make the whole day. We did make it and I am glad. It's memories and days like yesterday that we live for. It was nice to see Mike smiling and happy.



Drive into treatment

Mike and I dread every other Monday... which are treatment days. We had such an awesome time the day before. The nights before treatment feel like the day before school starts again after a long and fun summer. It's a snap back to reality. We both woke up today feeling annoyed and frustrated that he had to go for treatment. It's so exhausting and emotionally straining. We didn't want to go but we knew we had to. I used to love driving into the city and seeing the Boston skyline... now I hate it. It reminds me of cancer no matter which way I look at it.

Treatment went okay today. Mike rested most of the time. One of the side effects of chemo is cramping and numbness in the hands and fingers. He also gets neuropathy which is the tingling, numbness, and extreme cold sensitivity in his hands and sometimes feet. This drives him crazy. It leaves him unable to use his hands at time which is very frustrating for him. The doctor said it may get worse with each treatment and we will have scale back on some of his chemo drugs at some point. Another side effect during treatment is his eyes start to twitch uncontrollably for long periods of time. Today he was very nauseous as always. The nurse gave him medicine twice for the nausea, which helped. I tell him everyday how strong he is.



Mike getting his treatment

Mike has always been a physically and emotionally strong guy. He has and is always there for me. However it hasn't been easy since he was diagnosed. His body gets so weak at times and emotionally he is drained as well. We take turns breaking down and letting go of our fears and worries to one another. The last two times after we have gotten home from his treatment I've completely lost it. It's a long day... Cancer has taken a lot away from us and will continue to do so however it will never take our love away from one another. He tells me everyday that he couldn't do it without me... the truth is I don't know what I will do without him... I hate to think about it... makes me sick to my stomach everyday. The reality of this disease can't be pushed to the side and forgotten about. I will do everything in my power to make sure he has the best fight of his life. We just want our lives back... we want to feel normal instead of helpless. I've been seeing a therapist who I have a great relationship with. She has been working with me to keep me focused on being in the moment and enjoying Mike & I's special moments together. I swear this is what got me through my wedding with out being an emotional mess. I love my husband!
 

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Treatment Days, Port & Pump

Typical Treatment Day...

Treatment days are long... we used to go into the city early which we hated. It meant starting our day off in Boston rush hour traffic as well as ending our days in traffic. It made an already miserable day that much more miserable. Now we like to arrange for Mike to get treatment later in the day. An 11:45am appointment requires us to leave about an hour in advance. We start our day by leaving the house at 10:45am. Once we get to Dana Farber we park in the very convenient parking garage and go up to the 2nd floor to check him in. Parking is free for cancer patients so I usually run back down to the 1st floor to validate his parking. I also pick up his prescriptions for the week at the pharmacy on the 2nd floor. After that he waits at the lab in a room of about 20-40 people to get his blood work done. Then we make our way upstairs to the 7th floor (gastrointestinal floor) to meet with his Oncologist, Dr. Rubinson at 1:15pm. His oncologist is great! He is the same age as Mike, 37. He is young, informative, and really listens to our concerns. We like him. It's crucial to have an awesome oncologist on your team. We are very thankful for him. We can call him any time day or night with any concerns we have.

After meeting with the doctor we go over to the transfusion side and wait to be called in. Around 2:00pm Mike goes in to receives his chemo therapy for 3 1/2 - 4 1/2 hours. The current chemotherapy that Mike is being treated with is FOLFIRINOX it is the combination of 5-fluorouracil, leucovorin, irinotecan, and oxaliplatin. Some treatment days are better than others. Usually he feels pretty miserable and exhausted. He gets very hot and extremely nauseous. He spends most his time resting in and out of sleep. I keep busy by reading or using my computer. His mother Judy comes to treatments each week with us. We take our usual trips down to the café and bring back different snacks for Mike. He always laughs at us. Between Judy and I we always make things interesting for Mike. It is usually quite comical! The rooms are small. Some are better than others. We love the private rooms with a bed and a tray. They are quiet and have more privacy however they are hard to come by! Sometimes we have to deal with what we get. Mike did push one time to have us moved to a "better" room. His wishes were granted! While we are there certain specialists drop by to meet with us. We see a wonderful social worker each week. She has helped us with getting gift cards for groceries, information to set Mike up with different programs, resources for Mike, Ava and myself, information on support groups, as well as a check in with me to see how things are going. She has been great. Any information that comes her way she shares with us. Sometimes we see a nutritionist who helps me work on Mike's diet. We have also seen a pain and palliative specialist that has helped with Mike's pain management. The nurses are always great and very helpful. We both can not speak highly enough about how great Dana Farber has been to us.

When his chemo is ending the nurse comes into to disconnect the IV's. He then has a pump put on to go home with. Once we pack up our things we are off to usually sit in traffic on Storrow Drive. I have to admit I do the driving in and out of Boston and I've gotten pretty good at it. Even Mike's mom agrees with me! If we are lucky we make it home around 7:00pm or 8:00pm. Treatment days are easily 9 hours days. They are exhausting... and we hate them...

Port

What Mike's port looks like under his skin

Shortly after being diagnosed Mike had a port put in his chest. For those who do not know what it is here is an explanation...  
A port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". 

IV being connected to the port through the skin

Mike's port is on his right side under his collarbone. He has a small incision scar as well as a bump of where his port is beneath his skin. For the most part he does not feel it. However it is hard for him to sleep on his right side. He has to be careful and make sure nothing hits it. Each time he goes in for treatment they access the port and give him chemo through it. Whenever he has blood taken they also go right through the port. Mike hated having IV's in his arm so this is a much more effective.

Pump

Here is Mike with the 46 hour pump

Like I mentioned before Mike goes home with a pump after treatments. The pump has 3 oz of chemo that slowly continues to go into him for 46 hours. The purpose of the pump is to continuously release chemo into Mike's body to continue to kill cancer growing cells over a longer period of time. After his pump is finished we have to follow certain instructions to disconnect the pump and take it out of his body. I have learned how to do this so we don't have to take him back to Dana Farber each time. It is one less hospital trip for us which is always a plus. After I disconnect it I give him a shot in the back of his arm to boost his immune system. Now Mike is free of needles and cords which makes him very happy. Usually the first thing he does is run to shower. You can shower with the pump on but its usually pretty miserable being tethered to a line.

The next few days he usually takes it easy and rests a lot. We play the endless battle of making him drink plenty of fluids and make sure he eats. Sometimes it's nearly impossible when he is too nauseous to get out of bed though.

He is a champ. He doesn't believe me but he is. He has admitted to me in the past that at low times he quits but... I won't let him. Between the two of us he will NEVER give up. I love my fighter! 


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