Some days are just hard... In memory of our friend Matt

Yesterday was another day from hell...

We lost our brave friend Matt Keenan to this nasty disease last night. His wife Pam and I have kept in touch throughout our husbands nasty battle with pancreatic cancer. Mike and I looked up to them for strength, insight, advice and friendship. Another young man gone too soon. Pam we're sending you love and strength.  Now his beautiful wife Pamela need our help. Pamela was Matt's primary caregiver. She is currently on FMLA so that she could dedicate all her time to him. My wish is to lessen her burdens and help her financially. Thank you so very much for your support.

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My last post left off with our difficult decision to continue with a new treatment or go for a clinical trial at Johns Hopkins. It took us two weeks decide each time we met with the oncologist we would probe him with questions and scenarios. We were not sure what the right move was and we were having a very hard time making a decision and sticking with it. After about 3 weeks of Mike not being on treatment we decided to go for the clinical trial. We believed it was the right thing to do and we were at peace with that decision. Our next step was to see if he was eligible and go through insurance. We had a feeling that his insurance would not accept clinical trials so we were told. However we still pushed through and said we would do what ever it took to make his insurance work.

We decided to go with the trial because it was a new and very "upcoming hopeful" line of treatment. It involved using a specific pancreatic tumor vaccine along with immunotherapy to help his body identify the tumor and attack it through his own immune system. We had heard about the great successes that it had with other cancers such as melanoma and we were excited to be one of the very few to try it out. Our other option was going on a second line of treatment with a chemo drug called Gemabraxine. Besides Mike's first chemo it was the only other line of treatment they are using on pancreatic cancer patients. The way Mike saw it was I can try a chemo that is not a cure but a treatment that prolongs my life by who knows how long or we could take a risk and try a trial that could be a game changer. Mike wanted that game changer. His oncologist agreed that he was strong enough and a good candidate for the trial.

A week went by and we were still not getting approval from his insurance. I kept calling and bugging the intake trial nurse at Johns Hopkins as well as his insurance agent. Finally I got the dreaded but not surprising news that his insurance would not be accepted and John Hopkins could not take him for that reason... I don't understand a patient can't have treatment because of his insurance being a road block? It's messed up. I'm sorry but atleast he HAS insurance... what use is that?

Yet again cancer has us dangling around like puppets.

In the meantime Mike had not been on any type of treatment for 30 days. A part of becoming eligible for clinical trails you have to have a "wash-out" which means no treatment for 28 days before being eligible. Now let me remind you pancreatic cancer is one of the most aggressive forms of cancer. So doesn't it make perfect sense to go off treatment for a month to try a trial that has no obtainable data yet?? ... well I think not.

Tuesday morning Mike started having a new type of pain. It was a lingering pain that lasted longer than most. He was no longer eating and no longer taking in fluids. Ava had come over the previous weekend with a cold and by now it had caught up with me. I stayed home while Mike went to work. He kept texting me how uncomfortable he was. I was becoming more and more worried that there was some type of blockage in his bowels. We had been to the hospital two times before for this same reason and we knew it could become a huge setback and serious if it occurred. I encouraged Mike to listen to his body and come home and rest... and he did.

Ava had swim lessons and soccer Tuesday night. I told Mike to stay home and rest and I would bring her but he persisted he would be able to go.

That is when things started to get worse. He was dry heaving sweating and his pain was pretty intense. I rushed him home and had the typical argument of "I think you need to go to the hospital" and he insisted he needed to rest so I let him rest. Mike's dad took Ava to soccer and I stayed home to be with Mike.

Around 6:30pm he started to dry heave which eventually turned into vomiting. Mike has not vomited almost at all since he was diagnosed. I knew something was up.

Around 8:00pm Ava came downstairs and said I think dad is calling for you.

I went upstairs and found Mike laying on the bathroom floor throwing up. I screamed... my throat dropped to the pit of my stomach and I started to panic. Then my fight or flight mode kicked in. I screamed for Ava to get my phone I met her downstairs so she wouldn't see her daddy so sick laying on the ground. I gave her the choice of who to call to come be with her and she chose Mike's mom. She said she felt bad that papa (Mike's dad) watched her all day and brought her to soccer so she insisted he needed a break. As I was calling Mike's mom Sadie our puppy could sense something was wrong and she peed on the floor. As always everything hits at once. I hung up the phone tried to pull myself together which was a failed first attempt. Ava watched me frantically run around the house looking for items to pack for the hospital. She went in and out of hysterically crying. I kept running back to her holding her and comforting her with any words I could get out. I stepped back threw my hands to my head and kept yelling to focus and out of pure anger I found the closet thing next to me which ended up being a kitchen cabinet door and I slammed it as hard as I could. Not thinking I would scare Ava... I needed to take control and snap back in to reality. I ran upstairs and sat with Mike trying to do anything possible to make him comfortable. Ava sat with me. I kept talking to him to make sure he was conscious. When his mom got there I called 911 and we waited. A police officer and our local fire and rescue team arrived first. I begged them to take him to Brigham and Women's because that is where his oncologist sees his patients. They said we would have to wait for Trinity to arrive to make that decision. Ava helped me pack our overnight bag. I was grabbing things left and right, change of clothes, medicines, phone chargers, my tablet, toiletries and more. I've become pretty good at getting what we would need for overnight stays. In between shoving things in my bag I was grabbing Ava as tight as I could, comforting her in any way I could. It's not fair... all the suffering we have endured she's just a baby. I will never understand how life can be this cruel...

Ava went downstairs to be the look out for the ambulance it made her feel proud to be the first to tell us. Thank you to the fireman that comforted her while I was with Mike. Thank you for giving her the radio and allowing her to page the responders to see how far out they were. You really gave her the comfort and ability to feel special that she helped her daddy out in her own little way.

Mike's mom Judy and I shielded Ava from the sight of her dad being brought down the stairs. As soon as he was outside on the stretcher Ava ran into her daddy's arms. A sight that forever haunts me and is almost unbearable to watch. She repeated over and over my daddy my daddy cancer go away make him better. The sight put tears in some first responders eyes. Mike was wheeled away... we could hear Ava sobbing in her Mimi's arms...

By 8:40pm we were on our way to Brigham's in Boston. Thank you Trinity for listening to me and allowing us to be brought to the hospital we needed to be at. Mike was strong enough to make the trip into the city.

Around 9:20pm we arrived at Brigham's. In the ambulance I had paged his oncologist to notify him what was going on and that we were bringing him in. We quickly got him in a Emergency Department room which later on I realized we were lucky because the ED was slammed.

Eventually Mike received some IV pain meds and fluids. They took him for a CT scan of his belly and found out that he had a partial bowel blockage. Next the surgery team was in and out explaining possibilities of having surgery to correct the blockage. Memories started to come back to me from when he was first in the hospital waiting for his diagnosis. Lots of teams come in asking all the same questions and poking him in all the same spots. 

His ED nurse was amazing. She explained everything to us and really made us feel at ease. Thank you nurse Christina for making things easy for us. It makes a world of a difference when you get a great nurse. The ED doctor decided to have a tube put down his throat and have it suction out all the fluid in his stomach. By reliving the gas in his belly and the contents in his belly it would help the blockage. Around 12:00am the tube was inserted and then he had an x-ray to verify the placement. Mike was not having the tube in his nose. He was so uncomfortable. After around 2:00am another surgeon came into talk with us and he insisted she takes out the tube or he was taking it out himself. She agreed and pulled it out. We were told that they did not think he needs to have emergency surgery. We would then discuss surgery at a later time if the blockage does not seem to resolve on it's own. Without getting into too much detail he talked about how serious surgery is for a cancer patient. Risks of infections and not being strong enough. Luckily as of now he does not need it. Finally by 4:00am Mike was understandably getting irritated and wanted to be admitted. Around 4:30am after 7 hours in the ED we were admitted into the oncology unit at Brigham's. By now my cold had given me a splitting headache and the lack of sleep and stress was putting me over the edge. We both got about 2 hours of sleep before Mike was woken up at 6:00am for vitals then again around 8:00am. I slept on a bench until a cot was brought and then I crawled into it. 

When I woke up I was sick to my stomach and still exhausted.

Mike's pain has seem to subside and he is now having some movement in his bowels. This is a good sign. The oncology team would like him to have the tube back in his nose to help relieve the nausea but for now he refused. He is now resting. We have to wait for him to be able to eat food and pass it on on his own.

I'm exhausted, angry, scared, upset. I want my husband back I want our lives back. I don't want him to suffer or deteriorate. I hate not having control. This disease really tests every aspect of your life. It hurts your family and friends. I'm truly scared for what's to come...

I will post updates and information if things change.

In loving memory of Matt Keenan and sending love and support to his beautiful and amazing wife. 

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We've had better days...

Last Wednesday I took Mike to the local hospital at 3:30am. He had horrible pain through the night that became unbearable. I had his oncologist paged and he got back to me right away. He said if he thought we could make it to Boston to bring him in. If not then to bring him to the local hospital. So Holy Family in Haverhill it was. We have been there before and had good experiences. However this time it was a disaster. The doctor that was on looked at me and asked what I thought they should do to treat him. I was so mad. It then took 2 hours for him to receive his first IV medications... even though he was in excruciating pain. The nurse had no idea how to properly access his port. We then found out today that she accessed it wrong and damaged it. The ED doctors then switched shifts and there was even more confusion. Mike had a CT scan hours before and the new crappy doctor came in and said he was being sent for a CT scan. We corrected him and then he came up with a new story about the CT machine not working right and not having the report back yet. In other words he had no idea what he was talking about. We could hear the nurse arguing with the doctor over giving him more pain killers. I finally got so fed up I got on the phone with his oncologist and begged for help. He spoke to the crappy local doctor and after about 8 hours Mike was feeling better and we got the heck out of there. We increased his pain meds and stayed on top of it while we were away to Martha's Vineyard for the weekend.

Mike has been having more pain lately which has defiantly been a concern for us. We were petrified of the scan results...

Today was the day we had been dreading... we had a horrible ride into Boston and we were almost a hour late. The doctor came in and I gave him the cd with the CT scan on it from Wednesdays hospital visit. You would think with all he technology these days it could be sent virtually...but nope! We waited for his return and when he did I could tell on his face it wasn't good news. I instantly felt my heart sink. He told us that the scan showed that his tumor slightly grew... given his recent increased pain and his elevated tumor marker numbers he believes his current treatment is no longer working. It is now time to look into other options. What a punch in the stomach. I felt so sick. His oncologist discussed our two treatment options with us. One is a second line chemotherapy treatment and he second one is a clinical trial at John Hopkins in Baltimore. Both have their pros and cons. We have a lot to think about... Mike did not receive any treatment today. As we left the hospital we drove home with heavy hearts and in silence. My throat hurt from choking back the tears. I had a migraine and felt like I was going to be sick. Even though we were both silent our minds were not... We have until Wednesday to make our decision for now we will weigh out the good and bad...



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Treatment 19

Yesterday we celebrated Mike's 38th birthday with our families. We had a great time and Mike enjoyed the day. According to Mike's first (and rather sucky) oncologist he wouldn't be here with us to see his 38th birthday. Little did SHE know he's stubborn as can be and would continue to put up a hell of a fight and prove HER wrong. We owe a lot of his will to fight to his great oncologist he has now, Dr. Rubinson at Dana Farber. We are still so grateful that we were able to find a new hospital and a better oncologist. It has made all the difference.

Mike's stomach pain has returned over the past few weeks. It has been getting increasingly worse and worrisome. He has another scan coming up in a week. His doctor said we will wait to see what his scan says before we decide what's next. If the scan shows that the tumors are growing/spreading we will need to look at other treatment options. We discussed a few options that included different types of chemo and some trials. However we did not get too ahead of ourselves until we have the scan results. It's scary, it's terrifying, it's nerve-wracking, and it's very real. I still wake up some days and think it's all a night mare. Sometimes it doesn't feel real. There is no way my new husband was diagnosed with cancer so young... but it's real it's all very real and painful. But we still get up everyday and get through the day the best we can. No one asks for this but that's just how life works. You don't get to pick and choose what happens. Times get tough you, have to stick together and take care of one another. That's just how it is. I will never stopping helping Mike fight. He is my entire world and deserves all the happiness he can get.  

We have some special friends that are fighting this same awful disease in Virginia. Sending prayers, you know who you are! We are thinking of you. <3

For those of you who don't know as a family we will be walking in this years 2015 New England Pancreatic Cancer Research Walk

To donate to my team place CLICK HERE. You can donate anonymously or donate in honor of someone. Any amount helps $1, $5, $10, $25, $50... every donation brings us all a step closed to finding a cure. Thank you to those who have donated we greatly appreciate it.

Mike at treatment today

Mike's Birthday

Our Family

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Ups & Downs

Mike has been having a rough time this treatment. He has had a lot of pain in his stomach as well as dizzy spells and nausea. Today was the worst he has felt in a while. He had a hard time getting out of bed this morning. When he finally did we went to work and did as much as we could. By dinner time his pain was so intense he almost passed out. I had to rush him to the couch to lay down. Poor Ava got upset and we were both in tears by Daddy's side. I was doing everything I could to try and make him feel comfortable. I left the room to grab him a cool cloth and when I can back I lost it... the sight of little Ava knelling down next to her Daddy, rubbing his back and holding the trash can to his face was heart wrenching. No one should have to go through this never mind a child. Today was defiantly an emotional day. Mike is feeling better... but we have still been trying all the tricks up our sleeves that we know to help with the pain management. Ava and I cried together and snuggled for a while then we had a big family hug with dad.

Before Ava went to bed I pulled out a project that I had received a few months ago in the mail to help comfort her. A while back I came across a free CancerCare Comfort Kit for children who have a parent facing cancer. You draw on the pillow, there are 6 green hearts to write messages on that are put into the pillow, you stuff the pillow with cotton then seal it up. There is also a spot for a photo. We did it as a family and really enjoyed it. It seemed to calm us all down.

Working on our Pillow

As you all know m husband, Mike was diagnosed with stage IV Pancreatic Cancer at the age of 37 last September 2014. We have had our ups and downs with this disease and life... We've been forced to live a new "normal" that no young family should have to face. Every other week we stop everything to go to Dana-Farber Cancer Institute for Mike's treatment. A treatment that WILL NOT cure his disease but a treatment that will hopefully keep him with us until a CURE is found! We feel that it is part of our responsibility to help raise money for this cure... So as a family we will be walking in this years 2015 New England Pancreatic Cancer Research Walk

To donate to my team please CLICK HERE. You can donate anonymously or donate in honor of someone. Any amount helps $1, $5, $10, $25, $50... Every donation puts a smile on Mike's face and brings us all a step closer to finding a cure, early detection tools, improved treatments and so on!
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Treatment 17

Mike's treatments and weeks off from chemo have been going really well lately! Last treatment he did amazing. He said he has never felt better since before he was diagnosed almost 10 months ago. It's great to see him doing so well. His attitude has been very positive and upbeat. He is back to playing softball and seeing friends each week. He looks more like himself and he has even gained weight. His oncologist is still very happy with his progress. Keep bringing on the good news!

We recently moved into our new home and also got a puppy! Mike calls her his therapy dog. We have been settling in and are so happy with how our home is turning out.

Our Home :)

In September along with our families we will be walking in the 2015 New England Pancreatic Cancer Research Walk.

As you know our family has been deeply affected by pancreatic cancer. You may not know that pancreatic cancer is the nation’s fourth leading cause of cancer deaths, and that its low survival rate has not improved in 25 years. Research holds the key to finding better treatments and a cure. That's why we have joined forces with The Lustgarten Foundation. As the nation's largest private supporter of pancreatic cancer research, The Lustgarten Foundation understands that research is our best weapon in the fight. Thanks to a commitment by Cablevision to underwrite the Foundation’s administrative expenses, 100% of every dollar donated to the Foundation goes directly to pancreatic cancer research. Let's give patients like my husband a fighting chance.

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Happy Puppy Parents!

Sadie & Ava

Sadie

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Treatment 15

Today is treatment number 15. We also got Mike's scan results. We were extremely anxious going into treatment today. It doesn't take much to let our minds wander. Mike gets a scan to track his progress every 8 weeks. Within that 8 week period Mike gets 4 chemotherapy treatments. Over the last 8 weeks Mike missed a treatment due to bad weather. He also wasn't getting his full treatment cycles 2 treatments in a row due to his platelets being low and the neuropathy in his hands. As you can imagine we didn't have high hopes for today's scan results because he had only one full treatment in the past 8 weeks. When we got into the doctors office his Oncologist came in and said, "Good news your scans look good and my NY Mets are winning!" Mike's response was I don't care about the second one! Then they bickered back and forth about their sports teams. His doctor is from NY and not a New England sports fan. So there is always sports talk at appointments.

I was very happy and still in shock to hear that his scans came back good. Quietly tears of joy rolled down my face! I felt the invisible person that was wrapped around me pushing on my chest let go and disappear for now... Mike as always is still disappointed that he hasn't heard the 4 words he so badly wants to hear... "You're cancer is gone." Those words may not be in our playing cards right now but I reassured him that a good scan is a small victory and we will take it. Mike's platelets are at 99 still. This isn't bad but the doctor would like for them to get higher. He was able to move forward with treatment today... which is good. You would never imagine you would secretly in your head be begging the doctor to give him poison. That poison is keeping my husband alive. The side effects are awful but his life is more important. His Oncologist has also decided to put him on a new medication to help with the neuropathy in his hands and feet. His hands have been getting pretty bad. He also stopped one of the chemo drugs that was causing the neuropathy. For now Mike won't be getting that one. It's a possibility in the future they will put him back on it but for now they need to manage the side effects so they don't damage the nerves in his hands for good.

I've become an independent consultant for Jamberry. If you are interested in hosting a party or joining contact me at slanza24@yahoo.com You can also shop anytime on my website at http://showell104.jamberrynails.net/ 

In the mean time we are looking forward to our move into our new home. We are so blessed and can't wait to be settled in. Ava has been doing well. She does great in school and helps me take care of her Daddy. We spend a lot of time outside now playing soccer, building chalk towns with side walk chalk and riding bikes. We also all talk about ways to kill daddy's cancer... Like taking it out and sending it to the moon, blowing it up or throwing it in the ocean! In the past few months we have been living life more. Getting out with friends, going for walks, going out to dinner without having to take anxiety meds and much more! Unfortunately we have reached a new normal. We go through different stages of "normal" but we still have to keep waking up every morning and doing what we need to do. Everyday he wakes up and gets out of bed and lives is a win in my book. I fear for the days he stays in bed all day. My life revolves around caring for him and I wouldn't change it for the world but I do wish things were different every damn day. I wish we were enjoying our lives as newlyweds instead of me fearing the day I could be alone... My husband is young, my husband is a fighter, and my husband is strong so FUCK YOU cancer.  

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Treatment 13

Mike how did you get so high?

Yesterday was treatment number 13. It was an early appointment. We had to be at DF at 7:15am. There was a lot of traffic and we were late. When we got there we checked in and went straight to the labs. Mike had his port accessed and labs drawn. Then we went up to the 7th floor to meet with the doctor. We got called in pretty quickly which was unusual... too good to be true in fact. I saw his doctor walk past us and go into a different room so I assumed we were next. A 10 minute wait turned into 20 minutes which turned into 45 minutes to an hour wait. Nurses kept passing by and noticing that we were still waiting. Finally someone checked on our status and it turned out the doctors schedule got mixed up and he went into the wrong exam room. The room that he went into was a consultation that was an hour long appointment. We found ways to keep ourselves busy. I embarrassed Mike when I pulled out my knitting stuff :) somehow it is okay for me to knit in the chemo room but not the exam room?? haha We played around with the patient exam chair. I pressed all the buttons to see how high he could go in the air... then I left him there... oops! It reminded me of the time when we were in the ER and Mike had just gotten a heavy dose of the narcotic Dilaudid he was in la la land and I was getting pretty antsy so I started walking around the exam room looking through the cabinets and draws and he was super paranoid and convinced I was going to get in trouble. It was hysterical to see his reaction every time I opened a draw. 

Things have been going really well with Mike's treatment. The only thing he has been struggling with is the neuropathy in his hands. Usually it would go away in between treatments but this last treatment the tingling in his fingers has remained the full two weeks. His doctor has warned us that this could happen and that he would need to eventually pull back on one of the drugs so it would not cause damaging effects. As the doctor was looking at his lab results from a few hours prior he noticed that his platelets were low. Platelets help your blood to clot. A low platelet count can cause complications such as your body not being able to stop itself from bleeding. Which can result in internal bleeding. Certain chemotherapy drugs can damage your bone marrow (the spongy material found in your bones). Your bone marrow makes blood cells, which grow rapidly, making them very sensitive to the effects of chemotherapy. Chemotherapy kills many of the cells in your bone marrow, but the cells recover with time. Mike's platelet counts were at 93 and usually the doctor does not treat a patient with chemo if their platelets are under 100. Mike insisted that he did not want to skip treatment. His doctor agreed to continue treatment this week but would pull back on some of the drugs this week in hopes that his platelets would bounce back in two weeks. He did say again he was happy with how his treatment was going. He also said he was in the long haul for his treatment. He wants to treat aggressively but also does not want to wear down his body too soon and cause complications. So if that means pulling back sooner to let his body rest now rather than later it's for the best. We have been lucky Mike has been responding very well. It's has not been an easy road, and it doesn't get easier.

Mike was able to get a private room with a bed. His treatment was also shorter due to part of his treatment being pulled back. We made it home before rush hour and both crawled into bed by 3pm for a nap! We were both exhausted. Mike woke up later that night and had dinner. He also ate a lot today which is great! His weight has been back up which is good too.

Mike getting his snooze on! :)

Waiting is tough. There is a lot of waiting involved and there is nothing you can do about it. If the labs get backed up you wait... if the doctor runs behind schedule you wait... if the pharmacy takes their time to mix the chemotherapy drugs you wait... if someone forgets to submit something or does it wrong you wait... more. You can complain, get upset, you can even yell all you want but it's not going to push you ahead of all the other sick patients so you just... wait. I've learned to become very patient while we are at the hospital. After a while time just seems to pass and I don't even notice it. I become numb and lose track of all sense of time. I spend a lot of time trying to distract Mike from himself. I try to keep his anxiety from getting the best of him. It's not an easy task by no means. As I've told a few friends and family in the moment I am solid as a rock. I can handle the situation. I can handle the bad, devastating, sad, heart breaking news with a stone cold face. I can react, ask the hard questions, get from point A to B. For the lack of a better word I've become "good" at being numb in the moment. I've put my fight or flight skills to the test and I am defiantly there to fight! It takes me a while to finally be able to comprehend and process everything that is going on... when those times of processing come... well... those are my darkest moments. I am usually alone... for now that's the way I like it and how I want it. I am just not ready for people to see that pain I am experiencing. However for those who are worried about me I am seeing a therapist on my own. Mike and I talk to a social worker at DF who is great. I also have friends and family who I can turn to when I need to and most importantly I have Mike, the love of my life. A few weeks ago Mike and I started the process of taking care of affairs. We've had the tough conversation of what services would look like for Mike... Never in my worst nightmare would I have imagined we would go from planning a wedding to planning a funeral. Yes I just said that. It doesn't surprise Mike. We are very open with each other and NO topic is off limits between us. Part of this blog is to tell our story. To give people a glimpse into our journey. Let's face it a lot of people want to ask us these tough questions but we're just not always up for answering them or they are not appropriate for people to be asking us. The way we see it is this is a safe space for me to spill it all out for people to read and see what were going through... I share what we want people to know and I don't share what we don't want people to know. 

On the way to the funeral home Mike and I got side swiped by another car... have I ever mentioned we have terrible luck? Sitting down with the funeral home director wasn't as hard as I thought it was going to be. I had been dreading this day. Mike was going to go alone because he didn't think I could do it. Mike is not in this alone. There is no way he was going to go by himself just because he thought I could not handle it. What I am going through is hard, it's horrible it's awful but what Mike is experiencing is totally different and he is not alone no matter what!  After our meeting at the funeral home Mike and I talked about it. It kind of gave us both peace but at the same time we felt numb. The director laid out all the options for us and we were able to take all the information home and talk about it more. We think we have a pretty good understanding of what he wants. As I sit here and right this I am taken back by how really mind numbing this all is...

All I can say is keep your loved ones close. Don't sweat about the small stuff... you have no idea how frustrating it is to hear people complaining abut the most mindless things in life when they have their health... you never know what you have until it's compromised and taken from you...

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