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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Treatment 10

My posts have not been as often lately. Partly because there hasn't been a lot that I have wanted to talk about. We've been trying to "live with cancer instead of honing in on it everyday". I just needed a break... Today makes treatment number 10 for Mike. He has been feeling pretty good the last two weeks. He has had very minimal pain in his stomach. He has been eating and drinking which is always a plus. We have been getting out more often. However he does have a lot of anxiety when we are out and around a lot of people. It comes over him hard and fast. Sometimes I don't recognize him when the panic attacks set in. It's awful... I feel so helpless. I worry about him all the time. I try to cheer him up but sometimes we just need the silence to get through. Lots of hugs, kisses, and I love yous!

Mike was suppose to have a CT scan on Saturday to see his progress. However due to Saturdays storm and Mike waking up with a migraine we canceled the appointment and rescheduled it in February. It sucks that we will have to wait longer to find out what his scans show. However he has been feeling good and his tumor makers are down to 16 which is a good sign. Normal range is 0-35 and when Mike was diagnosed he was at 58.

Dana Farber was a zoo today. A lot of people came in early to get treatment due to the storm coming in. All of his appointments got pushed back and we got started late. Mike had a rough time the last hour of treatment and the whole ride home. He was extremely nauseous, his hands were cramping and useless and his body has been twitching all over. We braved the storm on the ride home. Luckily there wasn't too much traffic and I got us home pretty quickly. Mike went right up to bed and I cleaned up the house in case we lose power from the Nor'easter headed our way, 3 feet of snow... really??

Mike's Fight

As you can imagine Mike's cancer has come to define us in the way we live each and every day. We have been forced to have very difficult conversations that newlyweds shouldn't have to have at such a young age. Of course we have scrambled our brains with the why, when, where, how and what ifs, however none of that matters it doesn't change that cancer has unwantedly crept into our lives. Although there are 300+ million people in the US "only" about 40,000 people a year are diagnosed with PC and it remains one of the more rare cancers and yet one of the most deadly. The war on cancer has provided some stunning progress... here are some stats on 5 year survival rates prostate- 98%, breast- 86% Hodgkin's- 85%, kidney 61%, colon- 61%, ovarian- 55%, brain- 32%, stomach- 24%, lung 15% and pancreatic.... 5%. It's hard to believe given that we are in the 21st century and we still don't have a cure... sneaky bastard. Like every other great cause we need more awareness for PC! There still is a chance and we have hope. It may be a slim chance but it's still a chance. Statistics are the results of what's happened to other people, not Mike. Every person's case is different, at different stages. Statistics are for the entire universe of cases and no one statistic can apply to Mike's individual case.

One of our struggles is continuing to live life as normally as possible. The fact of the matter is that everything has changed. Energy levels are low and filled with fatigue, emotions are strapped into a roller coaster on speed and every day tasks are often hard to complete. When Mike and I can work he struggles with the neuropathy in his hands. It has increasingly gotten worse and will most likely continue to the point where his oncologist will pull back on his chemotherapy. Most conversations with others begin with "how are you feeling?" "how is Mike doing?" Which then translates into the repetitive conversation of what's happening on the battlefront. Don't get us wrong we appreciate everyone's concerns for Mike's well being but it can be repetitive and mentally draining. Job after job we go into collect money after finishing cleaning the windows and we get the rapid fire of questions and conversation all centering around his illness- how he's holding up, what's next in his treatment, what do the doctors say, concerns and sympathy.  It makes for a very uncomfortable and unwanted conversation day after day. After a while Mike gets upset and the anxiety settles in and sometimes spirals out of control. We could be having a good day until these conversations bring us down. This is a huge reason why I started this blog. To help keep friends and family updated as much as possible to prevent those difficult conversations. I have a hard time not answering the questions that I am asked in regards to Mike's health. I'm smiling and being polite on the outside however each question is a painful reminder of how this disease is impacting our lives and every day duties. I hope I don't come off rude. It's just that we have been robbed of a lot these past 5 months and sometimes we need our privacy. We don't like surprise visitors. Our home is our safe haven. Where we have lost control over a lot in our lives sometimes we need to feel like we can still be in control of other things. If we don't return a text or phone call please don't be offended. Sometimes Mike and I are just not in the mood to talk and don't want to feel obligated to answer every phone call and text when we are having a rough time or spending quality time together.  A simple thinking of you goes a long way for us.

No new updates with my health still suffering from my chronic symptoms...

We are looking forward to our road trip to Florida. Mike's oncologist is going to pull back on some of his chemotherapy in order for him to feel better for the trip. We all agreed to not skip his treatment completely. We can not wait to be in the sunshine state with our families!

Ava has been doing well. She is excelling in school and has been an amazing daughter. She normally keeps to herself about Mike's illness but the other day I witnessed her first break down. It was hard to handle but I let her cry in my arms while she talked through her scariest thoughts. It was the first progress we have seen in her understanding daddy's illness. I reassured her that I will always be there for her and so will her daddy. No matter what anyone says she is my daughter now and I love her more than words can explain. After her breakdown we read a book on cancer and answered a few more questions in her book about dad's cancer. She was back to her normal happy self pretty quickly. Later that night I told Mike what had happened and he was visibly upset. It was hard to watch him like that... we held each other while we spilled out fears to one another. They are the hardest conversations I've ever had to have in my life but ones that can't be avoided. Mike and I's communication with one another is huge to our relationship. We are in this together no matter what.

Ava and I then went out to play in the snow and created a snowman family!

As always thank you all for your continued support and gracious donations to Mike & I. We couldn't do this without our families and friends!

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Treatment 9

Mike's treatment number 8 which was two weeks ago went really well. He felt good, his mood was upbeat and positive. We finished some projects around the house, got together with friends, went on dates to the movies and out to dinner, and of course the Patriots won their first play off game! Woohoo Go Pats! We sold our tickets to the game but plan on going to the game this coming week depending on how he is feeling. It feels good to be living life a bit more lately. We did have some stomach flu scares with his daughter being really sick over the week with the nasty stomach bug. Some how Mike and I dodged that bullet which is good. 

As you can imagine Mike (and me) both get anxiety the night before treatment. Once Mike starts to get anxious it quickly can spiral out of control. I try my best to distract him and myself from treatment day thoughts but it's easier said than done. They are such long days. Today marked treatment number 9. It's hard to believe it's been 5 months tomorrow since Mike was diagnosed. It has been the hardest and longest 5 months of our lives. He has come such a long way. He looks good and is feeling pretty good. However it's hard not to think about what the first doctor told us that he would have 10-12 months left. Its scary but we have to stay positive. He has made amazing progress. He's not going anywhere. He is a fighter. I love him so much.


Today when we were getting closer to Dana Farber my sister-in-law (she's an oncology nurse at DF) texted me to let me know there was a fire on the 1st floor at DF so the 2nd floor needed to be evacuated. The second floor is where you check in, wait for blood draws and there is a pharmacy. The fire backed things up a little bit but it did not end up being that bad.


We met with Mike's oncologist that appointment went well. Then he went to have his infusion. Mike did really well again at treatment. I attempted to crochet again but failed miserably! Mike's mom was with us too. Mike may have had a few too many doses of Ativan and was feeling rreeeaallll good! The social worker was meeting with us at that point and Mike has us all in hysterics. Oh it felt so good to laugh that hard and to see him smiling while he was getting treatment. Mike felt good and insisted on driving home. I wasn't feeling great. My vision was blurry and my head felt off. It was nice to have a break from driving. He felt proud that he concurred his goal of driving home from treatment. I was proud of him too! Once we got home he went up to bed. I hope he feels great this week too. He will be having another scan soon to track his progress. Fingers crossed that his scans positively correlate with his improved labs and how he has been feeling.


As for me I have still been battling my own chronic health symptoms. I am working with two doctors and am hoping some of their new strategies are getting somewhere. I am hopeful... I will be starting a thyroid medication as well as a homeopathic remedy that targets to treat the specific symptoms I have been suffering from. I have also tested positive for bacterial overgrowth in my small intestines. My doctor said it could be from diet or stress. It's obvious that both my stress levels and eating habits have been directly impacted over the past year. I am on a probiotic and medication to help fix my GI tract. I have also found out which types of foods I am sensitive to. I am trying to avoid those types of food. Ugh one thing after the next!


I am also looking for a part time job. Something that I could possibly do from home and that is flexible. If any one knows of anything please contact me. My email is slanza24@yahoo.com anything local is greatly appreciated.

Love these beautiful photos capturing Mike & I being silly. It's so us!

Also thank you to all of those who have been donating to Mike's Fight. It's still hard to believe how many generous people there are out there that love us and care for us. We have amazing friends and family that keep on giving. We couldn't do this without all of you. Thanks


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Here is our awareness video again for those of you who missed it
http://www.garonephotography.com/stephanie-and-mike-union-bluff-york-maine-part-one/

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Holidays

Treatment #7 didn't end up being such a great one. Two Saturdays ago Mike woke up and couldn't get out of bed. He was dry-heaving, sick to his stomach and he had a lot of stomach pain. He stayed in bed the whole day. I kept bringing him up food and liquids to drink. He was so nauseous and he couldn't keep anything down. It was awful to watch. Then he would get the sweats and feel like he was going to pass out. I wanted to call his oncologist but he insisted that he would be fine. I now know not to listen to him... Four days later on Christmas Eve we ended up back at Dana Farber. I had called his doctor on Tuesday night and he insisted that we came in on Wednesday. I was upset because I didn't want to go to DF on Christmas Eve. I had planned on cleaning the house and preparing food all day. But Mike's health comes first. I knew we had to go so he could feel better. Mike was in a lot of pain again on Tuesday night. He couldn't get off the couch. To make matters worse I was in the kitchen getting food ready for Christmas and saw something out of the corner of my eye go running across the floor. I started screaming and jumped onto one of the chairs. It had looked like a rat! Mike came in but missed the animal! Then we could not find it and I started to think that I had hallucinated and never really saw anything. About 10 minutes later it came back upstairs and Mike spotted it. It was a mole! We have no idea how it got into the house. I called my dad crying and he came over with traps to help us get it out. We were not able to get it out on our own but my dad and Mike's dad went through the basement and we think it may have ran out the door while they were moving things around. We have not seen it since so it must have gotten out. Needless to say we did not have any visitors on Christmas Day thank god!

On Wednesday, Mike's dad went to the hospital with us. The doctor was disappointed that we didn't call sooner... Mike was severely dehydrated and had lost 12 pounds from the week before. The doctor gave him new meds to help with his constipation from all the narcotics. He also got 2L of fluids. He was feeling better by the time we left. Once we got home he took a nap before we went to my parents for Christmas Eve.

Christmas Eve and Christmas day were a blessing! Christmas Eve was at my mom and dads and Christmas Day was at our house. Both days we spent with all of our immediate family. Mike felt good and was able to eat and drink again. Thanks to Mike's brother Doug and Tim I found my new love of wine/champagne. I kept saying how I was grown up and was more sophisticated. :) We played pool, exchanged gifts, and ate tons of food. Ava had a great Christmas too! She had tons of gifts to open and was really excited the whole day. Mike and I both agreed it was the best Christmas ever! 

Mike's Family

My Family

The Howell's <3

Typical Day

Ava & her new bike

Me & my Fighter!

Like I've said before we need to have a few good days to forget about all the bad days and suffering that goes with it. Every day is a struggle but every day he feels good is a victory for us and we will take it. 

Today was treatment #8 for Mike. He woke up feeling pretty sick. He had a migraine and started to throw up. He didn't think that he was going to make it to treatment but I kept insisting that he needed to go. Even if the doctor decided that he didn't want him to have treatment I wanted him to get checked out. After learning the hard way too many times I don't like to mess around when he doesn't feel well. We were late but we made it. My mom came with us today. She was on Christmas shut down at her work so it was one of the only times she would be able to come in with us. It was nice having her there. Mike did awesome at treatment today. I didn't think he was going to do so well considering the way he was feeling this morning. His nurse Elena is amazing. She knows what Mike needs and likes. She got him a private room with a bed today which he prefers over the chemo chair. She also turned the heat off for him so the room was cooler by the time we got in there. Last week we gave her a card with a purple ribbon and a Mike's Fight bracelet. Today she was wearing both of them. It's amazing to see how much the staff cares for Mike. He truly is in good hands at Dana Farber. He was able to sleep most of the time and he didn't get sick. When we got home he surprised me and even ate some dinner! I am so proud of him. I can not imagine what he is going through physically and mentally, but yet he handles it so well. I am honored to be his wife and I love him so much.

I've been doing pretty well too. Emotionally I have been feeling pretty good. It never gets easy. The scary thoughts never go away but you find a way to get through it each day somehow. I will never understand the why's and what if's. There's no point wasting your time and energy on those things. You just have to do what you have to do in the moment. We hug and kiss as often as we can. We tell each other we love each other all day long... it never gets old. We laugh and we cry when we need to. We do it all together... I know I am not alone and neither is he.

Mike and I are happy to say that we have booked a vacation! In February Mike, myself and Ava will be taking a road trip to Disney World in Florida. We can not wait. It will be a great time. Mike's brother got us a video camera for Christmas so between that and my new fancy camera we will be making many memories! We are hoping that some of our families will be able to meet us in Florida too.

Praying for Mike to have a quick recovery from this weeks treatment!

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Tough days

Mike had an awful day on Saturday. He wasn't able to get out of bed all day. He was in excruciating pain, dry heaving, and had the sweats and chills. I thought he was going to have to go to the hospital if we couldn't get his pain under control. Luckily I was able to get him to eat and drink a little bit and take his pain meds enough to get him more comfortable. Once he stops eating and drinking fluids it's hard to keep him from getting dehydrated and setting him back. This makes it harder to bring him back from the pain and dehydration. 

Some days it's just about focusing on each minute and what we have to do in that moment. Watching him finish eating some pears and an applesauce is a small  victory for us both. 

We had dinner plans with my parents that night that we had to cancel. It was not a big deal we all understood he wasn't feeling well and it was not worth him trying to get up to be miserable. My parents and I both fully understood. He was disappointed and hard on him self for as he put it "ruining dinner plans". In all honestly he didn't ruin anything. I was content staying home and picking up the house (who would have thought!) So he stayed in bed and rested. Days like these are so hard for me. They are even harder for Mike and his body. The pain was a 10 on a scale of 1-10, 10 being the worst. Each wave of pain drains his body more and more until he his exhausted. Easier said than done I try to push him through the pain and get him through it. These bad days scare us both. We never know if things could take a turn for the worse and we don't know how bad things can get. We try not to think about these things. We try and focus on mindfulness. (Keeping our minds focused on the present moment) They are not posivite thoughts for our minds however they are impossible thoughts to fully avoid. 

Mike was doing better today. He looked better but still was not quite himself. He is still very nauseous and has stomach pain. He is not eating and drinking as much as I would like. But I do understand that it is a huge struggle for him to eat and drink. One of the side effects of chemo is lost of taste. He says all food tastes horrible and it's hard to eat when he's not feeling well. I totally get it I can't imagine anything tasting good. He's lost over 40 pounds since he was diagnosed. We both don't want him to lose more weight because it makes him weak and harder to fight. I'd have to say he is so strong. Stronger than most people that are in his shoes. I am so proud of him! 

Nothing is guaranteed in life... I thought I was on top of the world 3 months ago... I was good at my job I was getting ready to have my dream wedding and we were planning out our future together... Then it all came crashing down. Literally in the matter of days. One excruciating day after another that lead us to his unimaginable diagnosis. It has really put life into perspective. None of us are promised to live these long elaborate lives and we are not promised to live one day to the next. Anything can happen to anyone. No matter how healthy you think your life style is or how invincible you may think you are. Anything can change in the matter of moments. This is something most people don't realize while they live their busy lives. You get so caught up in life. I learned to drop everything and to step back and look at my life. To not take people for granted. To not get wrapped up in work and take it home every night... Only to miss out on time with your loved ones. Nothing is more important or more valuable in life than your family... Nothing! Family is everything. A lot of people can't slow down and realize that. It's sad and I feel bad for them. Another lesson I've had to learn the hard way...

This is such a hard life struggle to face at such a young age. It has made me think of everything in life differently. It's made moving on in life harder. I can't say I look forward to much of anything now. These thoughts stem from the anxiety and depression that has set in. Mike and I both take a low dose medication each night to help us sleep and get through each day. This was hard for us to do at first. We both refused to take any kind of anxiety medication but we learned quickly that we needed it and that was okay. This new life sucks.. Ava and I both agreed we would rather break both our arms and legs so daddy didn't have to go through this... Another thing in life you can't do is bargain with your health... You get what you get... You learn to live with it or not. We choose to take it day by day because that's all we can handle right now.

I have to thank everyone again for all the generous gifts and donations we have received. People have been amazing to us. If it wasn't for our fundraiser we would be seriously struggling with money right now. Every little bit helps. We are not able to work much right now. Not working has been very hard on both of us. We both learned at a young age to work for the things we want in life. Since age 13/14 we both have always had a job. Not working makes me feel like I'm failing. However I wouldn't give up the time I spend/care for Mike to go to work. He needs me and I need him. After the holidays I will be looking for some work that I can do from home to help pay the bills. If anyone knows of some at home work I could do please email me at slanza24@yahoo.com anything at this point would be helpful. Thank You! 

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