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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Florida & Treatment 11

We had a nice road trip to Florida last week. Mike did very well on the trip. It made me happy to see him feeling well and getting a break from treatment. Our road trip home was a bit of a nightmare. We hit a snow storm in Maryland that slowed us down and forced us to stop at a hotel for the second night on our way home. In all we were happy we got to spend some quality time with our family and we got some time away from reality.


Ava & I at Animal Kingdom

Breakfast with Mickey

Mike & I in Epcot

Mike & his Family

My Family in Magic Kingdom

Monday morning it was back to reality. We were back at Dana Farber for Mike's 11th treatment. Mike woke up not feeling well. After having a month break from treatment he had a lot of anticipatory anxiety. He was very nauseous and had a migraine. His body was still exhausted from the trip. We did a ton of walking and his legs and back were paying for it. He also didn't sleep well in the hotels.

Sad that were back at Dana Farber

Once we arrived at DF Mike went to wait in line to check in while I waited in line to pick up his prescriptions. Next it was on to the waiting room for him to get his labs drawn. We waited for quite some time. They usually are running behind but that day it seemed to take longer than usual. Next we went up to the 7th floor to get him checked in to get his vitals and then to see his doctor. His doctor examined him and gave him the okay to get treatment. Mike wasn't feeling well while the doctor was with us. He had to lay down and he was covered in sweat. His doctor also thought his anxiety was getting the best of him. He ordered for him to get fluids during his chemo which defiantly helped him. His oncologist told us that when he first started treatment back in September his tumor in his pancreas was measured at 2.9cm. After his first 4 rounds of chemo his scan measured at 2.7cm and his latest scan measured at 2.0cm. He no longer has fluid in his belly and the lesions in his stomach look better as well. He thinks his treatment is going well and has hope that it will continue to help his quality of life. After that appointment we checked in across the hall for him to start his infusions. Our favorite nurse was there which is always a plus. When Mike got to his room there was a sticky note on his room door that read "This room is reserved for Mr. Howell". She is so good to us. There are only about 4-6 beds on the floor the rest of the rooms are chemo chairs. Some of them only have a hanging curtain separating them from he next room (we hate those rooms). We are very lucky when he gets a bed and private room. Mike does not handle treatment well and often tries to sleep in bed during his treatments. Thank god for his nurse!

Kisses for Mike During Treatment

We tell her every time we see her. She is an angel! After Mike was set up and on his way the social worker came in to check in with us. She checks with us every time we are there. After that I took care of a few things like the free parking pass, got another prescription and got us food. I was exhausted during his treatment. My throat was hurting and I was starting to feel sick. The trip had caught up with me too. I ended up with a cold and did everything I could to keep it from spreading to Mike. One of my biggest fears is him getting sick. His immune system is compromised from treatment and harder for him to fight off germs. I still am not feeling great today. Mike has a sore throat too and I hope it doesn't get any worse. Today is Mike's 5th day after treatment and he still is extremely fatigued. He has spent most of his time on the couch or in bed. I did surprised him with quick trip to the beach, arcade, and beach pizza today. On the way home he agreed it was nice to get out of the house for a while. When we got home it was back to our usual spots on the couch. He has been hard on himself this treatment. I keep reminding him that we had a very busy week right up till the day before treatment. His body was still recovering from the trip. Going into treatment he was already struggling. The doctor said in the beginning every treatment will hit you different. It all depends on the week before and how rested you were. He has also been having more stomach pain lately and not eating as much. I worry about his weight. He has continued to lose weight. When I hug him he feels like skin and bones. It makes me sad. He's down to the weight he was last in high school. I do my best to fatten him up but he often isn't hungry and has lost his taste buds. Nothing tastes good to him anymore. Mike was always a lover of food. He hates that he can't enjoy eating anymore. I hate seeing him loosing weight it scares me... His doctor isn't concerned about his weight right now. He thinks he is still at a healthy weight.  I am just not used to him not eating as much...



Beach Date



Of course we wish that his tumor would disappear and everything would go away and we could get on with our lives. For now we hope and pray for a miracle and live life the best we can. We still struggle everyday. Between the two of us one of us always isn't feeling well which makes our time together difficult. We spend every day and night together but most of the time we are just moving through the motions. We lack the quality time together as a couple and as newlyweds. Even simple tasks of going out to dinner together triggers anxiety in one of us or sometimes both of us. Instead of enjoying time together we were spending it worrying about one another and popping Ativan to calm us down. Anxiety has become a constant visitor in our lives... it's expected we understand but it still doesn't make it any easier. Mike has had a hard time with accepting the fact that anxiety often gets the best of him. Before he was diagnosed he had never experienced it and wasn't always a believer in it. The first few months of treatment he really struggled with the amounts of pills he now had to take every day. His anxiety got so bad it kept us from leaving our house at times. He has come to understand that it is a real feeling and is something that he has to live with. In the beginning he was against having to take more pills. Around this time I struggled to sleep every night. Between my chronic illness and Mike's diagnosis it left me many sleepless nights and often days of feeling like a zombie. My doctor prescribed me some anxiety medication to help me sleep at night. Now I can't get a good nights sleep with out it. Mike saw how it helped me and he too started to take a prescription as well. He is more accepting and now understands how real and how scary anxiety can be. Previously we both were strong believers in overcoming hard times without medication but we have now come to understand that it is okay that we need it.   

For now we are spending our time resting up. Like everyone else we wish this cold weather would go away so we can get back to working when we can. Surprisingly those days we can wake up and go to work help make us feel the most normal.

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Good news!

Due to another blizzard today it prevented us from going into Dana Farber for Mike's treatment. We called the doctor to ask what he would like to do. We were also anxious because we have been waiting for his results from his scan last Tuesday. His doctor said that he was happy with his scan and that things were continuing to shrink!!! We were very happy to hear this. Great news! He also said that we could come in tomorrow for treatment at a lower dose or if we felt comfortable we could skip his treatment this week until we got back from our trip. We were a little hesitant at first but decided to skip so he would feel well enough to travel. Today we finally got the chance to breath a little easier and look forward to spending quality time with our family on vacation!

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Today Sucked

Today Mike had his rescheduled CT scan to see how his Canceras taking to the chemo. I woke up with a stiff neck and in a lot of pain. Like everyone else I shoveled all the snow off our back deck. I'm assuming that's what gave me the neck ache. Mike's scan was at Brigham and Women's. His appointment was scheduled for 3:45pm but we had to be there for 2:45pm. We left the house at 1:15pm to pick up his dad. We expected to be there super early but why would things go our way... Instead we got stuck in the gridlock on Boston. We were on Storrow for close to two hours. We were all frustrated but there was nothing we could do. Mike was about ready to give up and drive home. I begged him not to because I didn't want to have to come back again. After thinking we would be 40 minutes early we ended up being over an hour late. Mike forgot to take his meds this morning which he never forgets. He was having a lot of pain and discomfort. Lesson learned keep all meds on us in the future. The scan was at Brighams because that was the only place they had an opening after we cancelled the first time due to weather. We parked at Dana Farber and used the tunnels to get to Brigham and Women's. After searching the long hallways... up and down in the elevators and being sent in different directions we finally found it. We then dealt with some insurance coverage issues and registration hassles. I was convinced Mike was pushed past his limit and was going to leave. I was holding back tears from all the frustration. I kept telling myself not here not now... it could be worse. He ended up hanging in there... he drank the nasty contrast drink and had his scan. While he was in his scan his dad and I watched the news. They were showing images from the news helicopters that we were watching while we were stuck in traffic. Apparently all the snow piled up was to blame for the traffic. Things didn't look any better. We walked to a nearby food court and ate dinner before getting back on the road. 

The ride home wasn't too bad. We both couldn't wait to get home and crawl into bed. After the day's frustration I am glad it's over. The scanxity now sets in until next week when we get the results. Cancer you suck thanks for souring another day of our lives.

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