Monday, April 9, 2018

Not 'till we are lost / do we begin to find ourselves

It's been one month since we said our final goodbyes. Everyday I can slowly feel my heart mending itself. However, I don't think my heart will ever be whole again, he took so much of it when he left. I would like to say that I am adjusting well. Often times you see widows depicted in movies as these fragile broken people. Months ago I tried to picture myself in this exact situation. Would I lay in bed all day and cry? Would I surround myself with junk food and binge watch Netflix? Would I cry at the mention of his name? Would I be able to get up and function through life? Would I ever leave the house? Would showering even be a thing?

It should break you. Losing a spouse should destroy you. It should go down to the deepest part of your core and rip apart every ounce of what made you who you are.  While I do feel like the world was flipped upside down and a rug was ripped out from under me, I also realize that I am more resilient than I give myself credit for. The truth is, you'll never know how you'll react until you are actually going through it. I'm almost certain that if it had been a car accident or something that just ripped him from my life, I would clearly react differently. I probably would be that woman constantly falling to the floor with tears rushing down my face. That is something I don't think I could stomach. The difference is that we had three years to prepare. I was able to approach the grieving process with a clear head. I was able to take my time. Even though at the time, I really didn't know I was going through it, I'm grateful I did. I feel like subconsciously I prepared myself. But back to my point, it's been one month. One interesting, hectic and soul searching month. In that time I have learned how to sleep alone, how to cook dinner for one, and that I am pretty self reliant and can fix things (with the help of YouTube haha). I have found myself laughing more than crying. I am finding time to mend friendships that fizzled out because of all of this and I have even found time to make new friends. I am practicing self care; I take myself out to dinner, treat myself to new clothes, and even splurge on things I used to find a waste of money. I find myself taking chances, putting myself out there, and doing things I would never do. I am finding myself.

A really good friend of mine roughly pointed out that Josh passed away, I didn't. Those words were hard to digest but he was right. I will always carry a piece of Josh with me and I will always honor and respect my husband. However, I was also so wrapped in being a wife, being a caregiver, and simply being Josh's girl, that I lost sight of who I was. From age 14 that's all I've ever been, all I've ever known. Sure, I had my own hobbies. I was my own person. But there was no Jenna without Josh. The past three years I was so invested in being the perfect wife and the perfect caregiver that I went above and beyond so often that I lost sight of who I was.  I stressed myself to be the perfect everything, that it weighed on me so much like a ton of brick. Often times, I would have mental breakdowns and Josh, even though he was fighting cancer, would always be there to pick me up. Losing sight of who you are is a common occurrence when you are married and I think it's something that just naturally happens over time. However, my situation is different. Typically in a marriage when you lose sight of yourself, you rely on your partner to help you regain your sense of self. For once in my life, I'm on my own. Its scary, it's intimidating. But the one thing I've realized is that no one has life figured out. As cliche as that sounds, everyone is all trying to figure it out for themselves. Most people have a firm grasp, but even they doubt their abilities and who they are.

I have always been the type of person so wrapped up in what other people thought of them. Not to the point where other people's opinions really influenced my life, but it was always something that stuck in the back of my mind. What will so and so think of my choice? Will it impact how they think of me as a person? I always put so much emphasis on the other person. It's something I have always struggled with. Josh? He could care less. He made his own choices, didn't care what other people thought. I always looked to him for guidance. Josh knew me better than anyone else in this world, and often better than I knew myself. I find myself playing over his voice in my head. When I get myself into situations where decisions need to be made, I hear his voice. When my anxiety gets the best of me, and I feel trapped in a situation, I always hear him say "quit your bitchin, it could always be worse. You could be getting shot at" That was his favorite thing to say, it could always be worse. That grounds me and I realize me freaking out over something so stupid, could always be worse. So I quit my bitching, and handle it like a boss.

So what does this all mean? Is this just a blog about me bitching about finding myself? Well, yeah, it is. At this point in my life, I am unsure of what I want. At 29, I'm still trying to figure out who I want to be when I grow up. I have been forced to look at my problems I have been avoiding and make a decision. I'm trying to not take life so seriously. My therapist kindly pointed out to me that nothing is set in stone. I can't plan for everything. Life will throw me curve balls when I least expect it, case and point, losing my husband at 28. But I don't want that to define me. I want it to empower me. To allow me to be the guidance for others going through this situation. Often times I have a hard time allowing people into my world. I have always been a "keep your circle small" kind of girl. I never allow people in. I can probably count on one hand those who know my deepest darkest secrets. I'm trying to be more open, to allow people in. It's hard and is definitely pushing me out of my comfort zone. I never want to be a burden for someone. My problems are not cut and dry and they are not easy to offer comfort or advice on. But what I am realizing is that so often I am the person that people run to for their problems. I'm always the advice giver. Lately I have been able to find a few people that allow me to be my completely raw self, they help me through things, and the never complain when I talk about the same thing over and over. I can message them at 2am when the ugly crying has started and they talk me through it. I can speak freely about Josh, what he meant to me, what my feelings are now that he is gone. It's just nice to know that I'm not alone. People are investing in me just as I have over the years.

I'm in a good place. I often have the moments where crying comes out of nowhere but I am also learning how to deal with that. I have become more open to embracing my emotions rather than burying them or avoiding them. If I feel a cry coming on, I put on emotional music and get through it. If I feel happy, I put on some uplifting music (reggae helps, you can't be sad listening to that!) and dance around the house. If I'm lonely, I call up friends to hang out. I am back to making my own choices, instead of them being made for me. Though I would trade it all to have him back, I'm also learning how to live again.




Thursday, March 22, 2018

It's okay, I will be okay

My beautiful angel gained his wings on March 3rd, 2018 at 3pm. He was 30. It was a beautiful and peaceful passing. At around noon that day, the CNA pulled me aside and said "I'm not entirely sure, but I think he won't make it to tonight." She knew. I knew. I looked at him and just knew. His breathing had started slowing down and the death rattle had settled in. My heart ached. In that moment I wanted nothing more than to erase the cancer. To shake it out of him. To cure him. I wanted my husband back. Not my husband with cancer, my husband that I knew. But I looked at him and he looked so peaceful. He wasn't in pain. He was just slowing down. At 2:45, I told my mom to run across the street and get our neighbor. We have known our neighbor maybe...six months? They had just moved in and we met them and exchanged hellos whenever we were outside, but truth be told, I didn't know him. Not well enough anyway to ask him to do what I was going to ask of him. He's a pastor and I just wanted someone there praying with us. Josh and I are not religious, but we have our faith in other shapes and forms. So at 2:45 I turned to my mom and said "Go get Warren." She ran across the street and angels were looking out because he was home (they are usually never home) and she came running back with him. We prayed. We all held hands and prayed. He asked for protection of me and told Josh that it was okay, he can leave this life. At 3:00 he took his last breath. I know this because my alarm on my phone went off. We had been doing morphine every three hours and he was due for a dose at 3pm. After he passed and we all said our final goodbyes, the CNA bathed him. It was a beautiful moment. They then asked me for some clothes so they could dress him before he left the house. My heart swelled with happiness because I did have clothes for him, but more importantly I had underwear for him! He had been without underwear for....close to two months! He always hated wearing underwear but when he was forced to not wear it, he really missed it.

We had to wait for the funeral home to come, so in the mean time we all took turns saying goodbye to him and then I sat right next to him and held his hand. I wasn't going to leave his side until I knew he was okay. When they came to get him, we had a small ceremony where they covered him with a flag. That imagine will forever be burned in my mind. It was peaceful and yet so patriotic. When they loaded him into the van to be driven away, I looked at my mom and said "this is the first time he's going somewhere and I can't go with him." It broke my heart to watch them drive away. My job was done. I had fulfilled our vows above and beyond. I had taken care of my husband when he desperately needed it. I had been his wife and caregiver. The next few days were a complete blur. We went and set up everything for the service. When we arrived to the funeral home, they told me that Josh was located at plot number three. Every time I think of that, I still get chills down my spine and goose bumps on my arms. His cousin introduced me to the meaning of number three the day after he passed away. The number 3 refers to the Trinity, and means that you are receiving divine protection, help, and guidance. In most cases if you are seeing a lot of 3's, it is considered to be the Angel Number and is a sign that you have a close connection to Jesus, the son in the Holy Trinity. But I have said it before, we are no where near religious. BUT the number three isn't just a coincidence. He passed at 3pm, on March 3rd (3-3), he was 30, and his plot is number 3. Mind blown. I am seeing three's everywhere and I am experiencing signs from him now.  I have started to keep them to myself. Mainly because I like the thought that Josh is constantly around me and it's just a secret between me and him. It's personal. But also too, I'm trying to keep myself sane and sounding sane, haha.

His service was absolutely beautiful. I wanted to plan everything and only accepted opinions and input from certain people. I wanted it to be authentically Josh. Everything from the music, to the pictures, to the food served to the decorations placed; it was all Josh. We had heavy metal playing, funny and inappropriate pictures placed, fish all over the room and I buried him with a packet of twizzlers. When I walked in to the viewing the night before the service, I was adamant that I went in by myself. I wanted a little time alone with him. When I walked in and saw him, I broke down. I haven't experienced much death in my lifetime and the ones that hit me the hardest have all be cremated or I was to young to remember. Fortunately, he looked so natural. They kept his beard. He had on clothes that I had picked out for him. Months prior to all of this I had found his suit in the back of a closet and brought it out to him. He had bought it up in Maryland for some military class that required him to dress for job interviews. I brought it out to him and told him to try it on. He grumbled at my request but did it anyway. The jacket was huge on him but I told him we should keep it for when "you know what" happens. He looked at me and said "Don't you dare put me in a suit." He was right. I could probably count how many times I have actually seen him wearing a suit and tie, twice being in high school for prom and homecoming. He wasn't a suit and tie kinda guy. He never told me what he actually wanted to wear, but I knew him. I didn't put him in his blues or any dress uniform like many who attended had expected. Nope, he was placed in a fishing shirt, khaki shorts, and his boat shoes. He was going fishing. Or, wearing his normal clothes, haha.

I had made it a point from then on out to make sure this service wasn't a funeral. It was a celebration of life and I strived to make it just that. Everyone wore fish shirts or hawaiian shirts, the uglier the better or the color green. There was to be no suits, ties, or formal wear. I wore a black dress the day of service, mainly because I literally own only three dresses but the black dress was Josh's favorite and as silly as it sounds, I wanted to look pretty for him just one last time. The service was perfect, but the entire time he was laying in front of me, I couldn't touch him. Even though his death was a devastating blow to me, the entire time all I kept thinking about was the last time I kissed my husband. We started dating in high school, when hormones were flying and we were constantly tangled up in each other, like typical teenagers but standing here now,  I couldn't remember the last time we kissed. It was driving me absolutely crazy. But then I remembered the last time he kissed me. My heart filled with joy and that will forever be one of my favorite memories from his last week on earth. The Wednesday before he passed, he woke up in the best mood. I'm talking old Josh was there for at least an hour or so. He woke me up out of a deep sleep by saying "Archie shut up!" I was floored! Typically he couldn't remember Archie and when I put him in bed with him, Josh acted scared of him. So leading up to his death, interaction with him was limited. But there he was, barking at something and as clear as day, Josh told him to shut up. I sat up and said "Good Morning Josh" expecting a grumble or unclear mumbling, but instead I got "hi babe". My heart swelled with joy, he was back! In that time, I was able to feed him, give him his pills, and even brushed his teeth. I didn't want to push much, so I kept very quiet while I was doing all of this. I put chapstick on him and for some reason, the instinct of the kissing face reminded me that I couldn't remember the last time he gave me a kiss. I was nervous to ask. Butterflies were forming in my stomach because I couldn't stand the rejection. Somehow I mustered up the courage to ask him for a kiss. He let out a deep sign and then stuck his lips out, typical Josh. I walked over and leaned down and he gave me my last kiss from him. I was flying high on cloud nine the entire day.  Now standing in front of him in his casket, I couldn't bring myself to even hold his hand. It didn't scare me. I just didn't want my last memory of me touching him to be so cold. He was never cold. Even when it was freezing in Maryland, he was always so warm. But kissing him was something that I had done a million times over so right then and there I made it a point to be his last kiss.

Afterwards, they loaded him in the herse and he was to be taken to his resting spot. Everyone had walked down to the gravesite. I stayed by his side. I wanted that one last moment with him. I told the driver to go slow, and I talked to him. I talked to him about our life together. I talked to him about the weather. I talked to him about the moments we shared. I talked to him about how much I loved him. When we finally arrived to the gravesite, I was an emotional wreck. All of my make-up had been rubbed off of my face. My waterproof mascara was stained under my eyes. They unloaded him and then loaded him into his grave. There was only one thing Josh planned for his own funeral, he wanted a song played. It had become popular again on the Guardian of the Galaxy sound track. I remember him telling me "I want this played at my funeral." He never said when, but I knew I had to incorporate it some how. I played Spirit in the Sky graveside. After that, he was honored with full military honors. They played taps and it was the most heart wrenching thing to witness. I have seen it depicted in movies and always told myself that will never be me. But, here I was getting a flag presented to me by some Sailor I didn't know thanking me for my husband's service to his country. After he presented it to me, I hugged it. I held it so close to me. It offered me comfort when I desperately needed it.

I don't look at this as a defeat. Cancer did not win. Josh put up and amazing fight, but his body just got tired. As much as it breaks my heart, I am also calm in knowing he will no longer be suffering.  He will no longer experience seizures. Brain swelling. An MRI every three months offering no good news. The saying in our house is, "it's okay." My husband, as much as I loved him, wasn't good in situations that made him vulnerable. Whenever we got bad news, he had seizures, experienced pain or I was an emotional wreck, he would hold me and tell me "it's okay." When I had to calm him down, when I had to comfort him - I would say "it's okay." The Thursday night before he passed away I held his hand and told him "it's okay. I will be okay." In reality, it's not okay. My life will never be the same. I will not bare children with this man. I will not experience life with him. I will not grow old with him. He won't be there at my major accomplishments. I won't be able to snuggle up next to him on the couch and binge watch tv. There will be moments my heart will ache for him. But I find comfort in telling myself, "it's okay." He will always be with me.


Wednesday, March 14, 2018

God saw you were getting tired / and a cure was not to be

I am currently sitting in a makeshift hospital room located in my dining room. Our table has been removed and in its place sits a hospital bed. In that bed lays my courageous and lovable husband. Next to that bed is stacks and stacks of medical supplies. You name it, we probably have it here. On the other side of him is his oxygen machine, that occasionally runs when he has trouble breathing. I have placed a bed next to him, so he is never alone, especially at night. I have grown accustomed having a complete stranger take over the medical needs of my husband. It was a surreal moment when they walked in and my caregiving days were over. Granted, I still care for him, but it's in a different way now. He is no longer solely dependent on me. I can breathe again. I can take a shower lasting longer than five minutes. I don't have to constantly panic whenever I leave the room, wondering if he's going to seize and I'm not going to be there. It gives me comfort when I leave, but I still rush home to him whenever I get done doing whatever it is that caused me to leave in the first place. I don't panic when he starts showing signs of distress. I am no longer fighting these battles alone.

He has moments where he has no idea who I am. You want to break your heart over and over again? Have your husband forget who you are. Every time it knocks the breath right out of me and my eyes swell up with tears. I always point to my wedding ring and tell him "you see that? That's a wedding ring. You gave it to me on our wedding day." Without fail, he looks at his hand and notices that his isn't there. To him, that means he's not actually married to me. I'm lying because his isn't there. Every time I tell him "oh, you have one too! It's just in the other room." And I run and get it. Tears running down my face. The man that promised to commit his life to me can't even remember my name.

He's combative. He has moments when he yells, cusses me out. tells me he's going to fight me and even tries multiple times to get out of bed. He tells me he hates me, that he is in this situation because of me. Everyone tells me "Oh don't take it to heart, he doesn't mean it." But it still goes straight to the heart. I came to realization that I lost my husband a long time ago. The body of my husband is currently laying next to me, but my husbands mind is gone. Every fiber that makes Josh who he is, is gone. He has moments, very slight and fleeting moments when he is there. You can see it in his eyes, almost a twinkle of light. One day a few weeks ago I said I was going to feed him. I didn't tell him that I had just bought his favorite food, spaghettios (he's a simple man) and I had planned on giving it to him for lunch. He was weak and weary when I went to sit him up. I scooped up a spoon full and brought it to him. He opened his mouth and took a bite and his eye lit up so bright. He raised his eyebrows and let out a "mmmm". There it was, it was a small glimmer of Josh. A shooting star across his face. My husband was back, even for just a second. I fed him the entire bowl and he enjoyed every bite. I turned to grab him a drink and in that moment, he faded. He closed his eyes and was back to sleep.

He sleeps a lot now. In the beginning I tried to keep his normal routine. I was annoyed with the nurses when they wanted to keep him doped up. I wanted to still have his moments with him. I wanted him awake during the day, asleep at night, eat meals with me and watch tv shows alongside of him. I was angry with them that they were taking these moments away from me. Then I looked at Josh. He was tired. Not just sleepy, but tired. Tired of fighting. Tired of being poked with needles. Tired of doctor visits. Tired of nurses bothering him. Tired of being bald. Tired of chemotherapy and a slew of pills. Just, tired. I finally came to my senses and reality set in. My life will never be the same again.

When we first got home, a nurse told me to go into his closet and get him a stack of old t-shirts. We were going to cut them up so he could wear one and be comfortable. I walked into his closet in search of t-shirts. I immediately went to his drawer that he has for the old shirts he doesn't care about and grabbed the two in there. When I walked back into the room, she said we would need more than that. She said "any shirt will do." So I walked back into the closet and by passed all of his favorite t shirts. Every one I pulled out, I put back. I couldn't bare the thought of cutting it up because in my mind it was his favorite shirt and he will want to wear it again. Then it hit me, like a thousand bricks, he will never wear these shirts again. Even now as I type this, my eyes are swelling with tears. Something so small is breaking my heart. Everything I do now, I think about the last time we did it. Rode in a car. Went to the beach. Sat on a bench. Held hands. Hugged each other.  Danced in the kitchen to no music. Think about that. Truly think about the last time you did those things with your spouse. Was it recent? Or in my case, could you not remember? I wanted so desperately to do them right then and there.

My therapist told me that I have already gone through the grieving process. I can almost pin point in my mind the moment I think that started. After he was diagnosed in October of last year, I felt different types of emotions all in different stages. I think I might have bypassed a few stages. I always use the example - if this was a car accident, my entire thought process and emotional being would be different. If it was a quick and unexpected death, I don't think I would have been able to process the way I am now. But he was given a timeline the day he was diagnosed. We were told he was terminal in that appointment. So in a way, I've had three years to prepare myself. Right now as I look at him, I feel at peace. Does it kill me that my husband is passing? Of course. But a bigger part of me knows that it is okay. He lived an amazing life and I gave him three amazing years after his diagnosis. I have no regrets. The pain hits me in waves. I didn't cry when they told me he was declining. I didn't cry when they counted how many days he's gone without food or drink. I didn't cry when they told me he probably wouldn't make it to the end of the weekend. I did however break down when I walked into my closet and stood next to his clothes. The smell of him. The softness of his t-shirts. I hugged them, putting myself in the mindset of it's him I'm hugging. I actually can't remember the last time I hugged him. In that moment tears came streaming down my face. I couldn't control it. It was a good, deep and ugly cry. It was needed.

Everyone keeps asking how I am doing. Sometimes I want to literally tell them to fuck off. What a stupid question. Why ask it when you already know the answer. What am I supposed to say? "Well my husband is dying of cancer, it's just sunshine and rainbows over here!!!" No. You know the answer. Don't ask the stupid question. But then there are moments when people ask that I feel thankful they did. Often times I forget to ask myself that. I think I am currently angry. I am mad that's a question people have to ask. I'm mad that people even ask the question. Often times I want to just be left alone. But then I think, if they are asking me this, I wonder if it's because they want me to ask them. I often times forget how much Josh impacted so many lives. How many people he touched and how many people loved him.

I still have no idea why this has happened to us and quite frankly, I probably never will. It's not a question I tend to dwell on anymore. It happened. It made us stronger, not only personally but also as a couple. It taught us real true genuine love. It taught us to be raw and real with each other. It taught us fear and compassion. It taught us to not worry about the things we can not control, life will happen and it will move on. People will come and go. The ones you thought will be there, well, they won't be and the ones who you never thought would, will surprise you. It taught me the importance of late night chats with my best friend. It taught me to hold the ones I love so closely. It taught me to see beauty in everything and to kiss my husband as often as I possibly could.


Thursday, January 11, 2018

These times are hard / but they will pass

I am taking a moment to pause for a deep breath. I feel like the past three months have been complete and utter chaos. I swear I ask Josh at least a hundred times a day how he is feeling. The poor guy has had a rough couple of months. The day after Thanksgiving Josh developed uncontrollable diarrhea. (TMI? Well, that's life!) We thought it was just that he ate to much Thanksgiving dinner. I mean, the boy does love to eat! It kept coming, and coming and soon enough I was worried that he would be dehydrated so I took him to the ER on that Saturday night. They ran a bunch of tests and sent us home with no diagnosis, but they did give him some very strong anti-diarrhea pills. We appropriately refer to this time as the poo-pcalypse. In the middle of all of this, he had also developed a rash on his butt/lower back side. We thought nothing of it as he spends most days laying down or sitting in a chair. We then noticed that the rash had traveled to the front and into the groin area. For the sake of my husbands dignity, I'll spare anymore details. Just know the rash was now on the front and back side of him. We can look back now and laugh but during all of this, I really thought that it was never going to end. After we went to the ER, that Sunday night I developed the worst case of vomiting. I was up all night, sleeping on the bathroom floor and vomiting every time I turned around. That next morning, I went to the walk in clinic and they said I had contracted the Norwalk virus! They gave me a shot of anti nausea and that entire day was a complete blur for me. It was incredibly hard being down and out while Josh was still sick. Luckily I had my rock star of a mother that was able to help take care of the both of us. When I started feeling better, I noticed Josh was still having unexplainable diarrhea.  Almost a week after the diarrhea started, I decided he HAD to be seen by his doctor. The pills had slowed it down but it was still consistent. His doctor wanted a blood test and a bunch of other testing done to make sure that he didn't contract c. diff from all of his hospital stays the month prior.

We ruled out it being chemo related and to this day, they really don't know why he had been sick. My theory is that he contracted some stomach bug and it just hit him really hard. The diarrhea (let's count how many times I type diarrhea!) had FINALLY stopped almost a week after it started. That Sunday night though he screamed out in excruciating pain. He said his butt hurt. Keep in mind he still had the rash, both front and back side though it had started to calm down at this point. For the next week, he would get random bouts of excruciating pain in his left butt cheek. It was almost hourly and he would squeeze the crap out of my hand. There were a few times when I thought he would break it. He would be on the edge of tears every time. Luckily the pain would last less than a minute but I know Josh, and I know his pain tolerance. It takes a lot for him to need to hold my hand and it takes even more for him to cry. A few days in, I once again took him to the doctor. This wasn't his usual doctor, but she checked him out and even witnessed his less than a minute of pain. She gave him some naproxen (generic aleve) and sent him for an x-ray. She believed that he bruised his hip/tailbone area when he fell a few days prior. I was skeptical but went along with it. She called me later that day and said the x-ray was fine (go figure) and she thinks it might be his sciatic nerve. The next couple of days he did every stretch I could find for sciatica nerve pain. Nothing helped. I even booked him a massage thinking they could work out the muscle that was inflamed. That definitively didn't work but he did get a nice relaxing 60 mins! So at this point he had been dealing with this uncomfortable butt pain for almost a week and a few days. I gave in and took him to the ER at the VA in Lake Nona. I have never been there before and lets just say, any other future illnesses  he will be taken there. It was awesome. We got there, waited about an hour and a half and then we were brought back to the room. Right when we walked in the doctor walked in behind us and told him to pull down his pants. In less than 10 minutes Josh was diagnosed and had medicine ordered.

So what was this mystery illness? It was shingles! The poor guy contracted shingles! The way shingles works is it is a patch of skin on your body. Most cases I read its like on the leg or on the side of the stomach. This poor guy contracted shingles that wrapped around his butt to his groin! The pain he was experiencing was nerve pain caused by the shingles. The doctor gave him valtrex and he was supposed to take this for 10 days. Almost two days after starting the meds, he was almost symptom free! Now, think back to Thanksgiving, because that's when he developed the rash, it wasn't until almost three weeks later that he finally got a diagnosis! I'm telling you, the boy has been through hell these past couple of months. Luckily Christmas was a complete success. We had a full house; Josh's parents, my parents, my grandparents, my brother and sister in law and my niece and nephew! It was packed but so much fun. Josh had a good day and surprised me with a necklace. I surprised him with a shadow box of his military career. Unexpectedly, it has every single uniform in it that he wore in the 10 years. I didn't plan that, but I love it and he was blown away when I gave it to him.


Josh is four rounds of chemo down and has had the device on for a little over a month now. The device itself is the easiest treatment he has ever had. Aside from his skin being dry, he has had no problems with it. Every three or four days I take everything off and let him spend the day without it on. He deserves a break. The doctor wants him at 75% compliant, on his last reading, Josh is 87% compliant! The device itself isn't as annoying as I thought it would be. I thought it would be loud and a pain in the butt. I'm so used to it now that I don't take a second to think about it when I load him in the car and go. The only draw back is he can't be outside without a hat for a long period of time. I'm talking like a few seconds before it starts beeping. But no biggie, he just throws a hat on and we go. He sleeps pretty well with it, which was my biggest concern. Along with the device, he has been taking chemotherapy pretty well. At the end of January we will get another MRI done to see if any of these treatments are working. Fingers crossed they are doing something. The chemotherapy falls on the doctors if its not working, the device falls on us. There is a map that I have to follow every time I change his arrays and I pray that I get it right every time.

New year, same old me. The only thing that has changed so far is I am trying to make more time for myself. I used to feel guilty when I would leave him to go get my nails done or to just aimlessly walk the aisles of Target. I'm trying to put that guilt aside because it's only myself making me feel guilty. Josh is always down for whatever I need to do to make myself feel happy. I am taking breaks from social media and putting the phone down more often. I am trying to read more and exercise more. It's a slow process but I am getting there. Last November I noticed a flyer in Josh's neuro-oncologist office for a 5k to raise money for brain cancer. I shrugged it off but took a picture to remind myself. I contemplated doing it for weeks and weeks. I have never done a 5k and I am not the most physically fit person. On New Years Eve I was talking with my mom and she convinced me to do it. It's for a great cause and it's at the end of February giving me plenty of time to work towards my goal of walking it. I'm adding in the resistance of pushing Josh so we have been taking daily walks around our neighborhood. It's fun, and it's a nice bonding experience for us. If anyone would like to participate or join us in the fun, please feel free to!

Saturday, November 18, 2017

Life doesn't give us purpose / we give life purpose

Many many things have happened since the last blog post. One major thing is the brain biopsy. Josh went in on Oct 18th for the biopsy. It was a fairly quick procedure. I honestly think we sat in pre-op longer than he was actually in surgery. Before I was able to see him in post op, his neuro surgeon came and got me. We sat in a very small room and talked about what he saw. He said the tumor was wrapped around the part of the brain that processes speech. It's not necessarily the part where Josh speaks, but more of where he comprehends speech. It was definitely an "ah ha" moment for me. Anyone who spends a little bit of time with him would notice this. You can tell him "okay, do you want peanut butter and jelly or a ham sandwich for lunch" and he will say "lunch." Sometimes I laugh (to keep from crying) and try to help him but sometimes I just make the choice for him if it's really that difficult to make. The neuro surgeon didn't want to over step boundaries as far as what type of tumor he thought it was or even as to what stage it is in. He advised me to make an appointment with the neuro oncologist as soon as possible. He gave us the option to either stay 6hrs post op and then go home or to spend the night and go home the next day. Because we were in Orlando and we live in Palm Bay, I decided to have him stay over night. I would have hated to drive all the way home and witness Josh have a complication of some sort. Last biopsy they actually didn't give us a choice and he spent the first night in the ICU to be monitored. They sent us home the next day and recovery from the biospy began. He didn't have stitches or staples, the wound was just glued and there really wasn't much wound care to do. He did fantastic at home and the only limitation he had was not being able to sleep on that side.

That next Wednesday night, he had his first seizure in I don't know how long. On Thursday he had two more. Per our rule, if he has three seizures within 24hrs, I take him to the ER. My fear was that there was swelling from the wound or he had an infection of some type. I didn't think the seizures were result of the tumor because well, he's on SO many anti-seizure medication. In my eyes, he shouldn't be having seizures if he's on four different types of anti-seizure medication but what do I know. While in the ER, they checked him out and ran some tests. He was feeling a lot better so they sent us home. That weekend he did pretty well. On Monday morning, he woke up at 6am with a headache Being the seasoned chemo veterans that we are, we keep a trash can right next to the bed which was good because he then started throwing up. We thought it was just indigestion. I gave him crackers and went to go make his breakfast. He threw up again. That's not entirely unusual, so I made him sip on some carbonated water, which is usually what I give to make him burp. He threw up again. That's when I started getting nervous. I was terrified he had caught a bug or there was an infection with the brain biopsy. He then started complaining of double vision and piercing headaches. He threw up a total of six times, not even able to keep water down. I decided to take him to the ER (he fought me the entire way, no surprise lol). They checked him in and he was taken back to a room. They ruled that he just had a severe migraine. Can't blame them; 30 year old male in seemingly good health just vomiting, having double vision and a piercing headache..classic migraine symptoms. But while in the ER, he had a seizure. It was a very minor one, a simple check in and out, but a seizure non the less. They decided to keep him over night for observation. That night they gave him a little to much of his medication lamotrigine. Unknown to us, there is actually a serve condition you can get from this medication called Stevens-Johnsons syndrome and since they gave him a higher amount than his body is used to this was a major concern for his neurologist. If you want to, you can look it up, I just suggest to not do it while eating. We met with her the next morning and she felt really bad about the medication mix up. They gave him his normal dose but noticed that his cheeks were becoming really red. She called in a dermatology consultation to make sure it wasn't the syndrome. The dermo came in and said he believed that Josh was just flushed from the steroids. The neurologist decided to adjust some medication so she decided to keep Josh another night. We spent Halloween in the hospital, but it was okay and we made the best of it. (thanks Mom and Dawn for the candy!) That day I was able to get into contact with his oncologist at the VA and she scheduled us an appointment that Thursday to go over the pathology reports and to talk treatment. 

While in the hospital, the neurologist had read the MRI and had let it slip that she thought Josh now has stage IV Glioblastoma or GBM for short. Now, here we are sitting in the room with his oncologist and she was bracing us for what she was going to tell us. She said the words Glioblastoma and let the word hang in the air. Josh and I looked at each other, and then to her, and said "yeah we know." She was shocked and a little annoyed that we had already been told. I told her this is just the way we find out bad news; it's usually from someone who has no right to tell us said bad news. Remember when we found out he was diagnosed with brain cancer from a radiologist and not his neuro oncologist? Yeah, fun times. So she told us what this tumor means and what treatment means. Remember last blog post when I said they will be doing the pediatric treatment? Yeah, that's not an option anymore. Instead they want him to do another round of a different type of chemotherapy called Bevacizumab or more commonly known as Avastin. From the research I have done, this seems like a pretty chill chemotherapy. It will be a 90 minute IV once a month but if tolerated they can knock it down to 30 minutes. Along with the chemotherapy, he will also be doing a treatment called Novacure. I'll leave the link here if anyone is interested in learning more about the device. Basically he wears this 18 or more hours a day. It's main target is breaking up new cell growth. It's a constant therapy and he will be doing it until they notice it not working or his body can't handle it anymore. Aside from minor skin irritation, the device itself doesn't really offer up many side effects. He will have his head shaved and will need to shave it every four days. His nodes are placed in a particular spot and we will be trained in how to do that. It comes with a battery weighing no more than 3lbs so even on his worst day, Josh can still carry it. It has four lines that connects to the battery so it's not a ton of wires. He is allowed to remove it for hot dates with me or for special occasions when he doesn't want to gain attention, he just has to make up the time he had it off. He is supposed to sleep with it (we will see how that goes, fingers crossed it goes well, the boy loves his sleep!) and he can either take it off to shower or detach the lines and place all of the equipment under a shower cap. 

Josh is okay with the chemotherapy. We know chemotherapy, as sad as that sounds. He's used to the routine. He's used to the side effects. But this Novacure is something completely different for him. He's not to thrilled about having to have his head shaved and having to wear this as much as he has to. I'm nervous for him, I have no idea what to expect. I'm also a little skeptical about the whole therapy treatment. To me, it sounds a little hokey. We will have to just wait and see. He will be having another MRI in January to see if anything is working so keep fingers crossed we have some good news. Aside from all of the new symptoms he's experiencing, he's doing pretty well. The Halloween hospital stay introduced us to at home physical therapy and a in home health care nurse. Both come twice a week. The physical therapy is to help with his walking as he has become quite wobbly. We don't know if its the effects of the prior chemotherapy or if it's the tumor doing the dirty work. Lately he's being using the walker through out the house and isn't allowed to be left alone at all because of the risk of falling. He's fell a few times and the first time I called 911 and had the fire department come out and help me get him back up. Since meeting with the physical therapist though, he has learned how to get himself back up. Physical therapy is going good though and he really like his therapist. We also filed for and received a handicap permit. That was something I NEVER thought I would have had to do at 28 for my 30 year old husband, but we did it and I am SO glad we did. It's made life a little easier. 

Ups and downs are par for the course. We knew this going in that it wouldn't be easy. We have had our rough times but we always try to find the humor in everything. We try to be there for one another and I am trying really hard to be understanding of our new normal. It's hard seeing my bright, loving life husband slowly deteriorate. But there are moments when I see the boy I fell in love with all those years ago and those are the moments that are forever imprinted in my mind. It's the smile and the laugh that keeps me going just as much as it's me that keeps him going. 

Monday, October 2, 2017

be gentle with yourself / you're doing the best you can

We have been playing this cancer game long enough to know, when your oncologist office calls to tell you to come in, it's not good news. In my mind, I went over the countless things it could be. Maybe she was taking a vacation and needed to see us before she left. Maybe his blood results showed something abnormal and she wanted us to have the blood drawn done in Orlando. Maybe he contracted a disease from his blood transfusion. Maybe. Maybe. Maybe. Then, my heart dropped to my stomach. An MRI was done on Tuesday. Josh's profile is flagged allowing his doctor to really be on top of his case. Anything that comes through about him; whether it be blood work, lab results, or an MRI, his doctor usually has the results within days..if not hours. My stomach was doing somersaults and I had to calm my mind from racing about a mile a minute. They told us to come in before 1 pm, it was 10 am. I got dressed as fast as I could and I remember the lump in my throat while I was brushing my teeth. My heart was racing and I could tell a panic attack was coming on. Just as I finished, my mom called to tell me that she was here to drop off her dog. I met her in the garage and she just knew. She hugged me and I broke down, letting the panic attack take over and I cried and cried. She kept saying "maybe it's good news." And I remember distinctly saying "we never get good news." She called her boss, told him the news, and jumped in the car with us to drive over to Orlando.

I never cry in front of Josh. Scratch that, I try really really REALLY hard to never cry in front of him. If something upsets me or he says something a little hasty, I usually go into our bathroom or closet and cry it out. I don't know why I do this but it's something I have developed over the past few years. I tend to believe that it's because I don't want to seem weak. I'm supposed to take care of him. He's supposed to rely on me when shit hits the fan. But instead, in this instance, it was him holding me. His mind was racing, probably faster than mine, and yet, he was the strong one. I was ashamed and silently scolded myself over and over the entire drive to Orlando. I am well aware that I am entirely to hard on myself. I get that. But in my situation, I have to be.

Once we got to Orlando, we were ushered right into his doctors appointment. Her nurse was able to squeeze us in between appointments. I was watching her moves and how she was talking to us to try and figure out what we were really there for. Most people can't hide it when they know about bad news. But I never know how to read his nurse. She is probably the most upbeat person I know. She always has a smile on her face and she is always joking with Josh. She was the one that called to have us come in. I heard her on the phone while Josh was speaking with her. She's just happy all the damn time. It's one of the many things I really like about her because you never feel out of place there. They all welcome you with a smile and try to make it as easy as it can be. This time was no different. I let out a breath that I was probably holding in since Palm Bay. I felt at easy. Maybe whatever they had to tell us wasn't as bad as we thought it would be. Maybe this would be the one time some good news would come out of the doctors visit. I allowed myself that slight glimmer of hope. She did his vital signs and actually gave him a flu shot because he was already there and needed it. I remember when she left the room Josh turned to me and said "I'm going to be so pissed off if that's the reason I came in." I had to laugh, because I knew that it was crazy to think that, but at the same time that would have been kinda funny. Any ways, his doctor walked in. Again, I can't read her. I don't really know any of these people that well, not as well as our previous oncology team. I do know that if she's got no news, she tends to notice the tension in the room. Basically every appointment we have ever had with her, we are always on edge not knowing what she is going to say. Last appointment she walked in and noticed we were tense and even said "why is it so gloomy in here, do you guys know something I don't?" We laughed. This time, I knew it. I knew that she was sensing the same thing. She was delaying. She did her usual neuro exam, she asked him if he has had any symptoms, asked about the blood transfusion...regular stuff. She then turned to her computer, almost to shield herself from having to see our reaction, and said "Now..you're MRI showed something." I knew it. I freakin' knew it.

She brought up his scans and showed us what she saw. Last June, he had an MRI done. Results showed a bright spot on his scan, which they assumed was radiation damage. That's what Dr. Theeler up in Bethesda had assumed as well. Now, there is a new growth. Same bright spot, but it's to the left of the initial bright spot. My heart sunk but I knew right away that this meant the chemotherapy wasn't working. That tore me up inside. I have seen his body go from an active (well...relativity active, lol) 30 year old to being weak and frail. All this work for it to not work really hurt me. I hate seeing him go through it, even worse when it doesn't work. She started throwing out treatment options. First one being going and seeing a neuro oncologist. Neuro oncologist are like unicorns, they are rare. And really really good one, is extremely rare. However, the blessing in that is that they usually all know one another. Before we left Maryland, Dr. Theeler gave us a number for Dr. Avgeropoulos, a neuro oncologist in Orlando. When we met Josh's oncologist at the VA, Dr. Carilli, she told us that she actually did her residency under Dr. Avgeropoulos (we will now call him Dr. A haha) and she still keeps in contact with him. The day she told us about the new growth, she said she had spent all morning on the phone with him discussing Josh's case. So, first order of business was to go see the man himself. They called Friday to schedule Josh. Dr. A is booked solid until November...and even then it was a long shot. But because he's been ghostly on his case since January, he said he would take him on as a patient. We actually see him tomorrow. Second order of business, is to have a brain biopsy done on the new growth. My stomach turns every time I think about having to do that again. Last time he did really well but I was a complete mess. Luckily for me I had my parents and master chief (I mean, John..he's a civilian now!) to help me through it. I have to keep hope and I know he's in good hands. The neurosurgeon comes recommended by Dr. Carilli so that eases my nervous...a little.

Now, what's the treatment option? Well, since we don't know what the growth is, they want to determine it with the biopsy first. If it's a continuation of his already disease, then we can start a new treatment. If not? Well, we'll cross that bridge when we get there. The new treatment however, would be a pediatric one. They have seen success rates in children with this disease at 70%. That doesn't mean remission, that means stabilization which is what he has been fighting for the past 3 years. It will be a completely different regiment. This one will require us to go to Lake Nona three days straight every month. He will be getting chemo through his port. We haven't made plans yet, but I'm almost certain we will just be staying in Orlando for those three days.

This news took us by surprised and we have taken a few days to sort it all out. When we got home from Orlando, we crawled under a rock destine to shut the world out. We cried and held each other. We were emotional eaters; silently celebrating the fact that we don't have the strict procarbazine diet anymore. We binged watched a few Netflix shows. We were just together. One on one with each other, trying to digest everything we were just given. Luckily my mom threw herself into action and came over to help me clean, cook, and even went grocery shopping. I really hit the lottery with my parents, they are always there when I'm not at my best. We knew this would be coming but we didn't expect it this way. On the plus side, Josh was able to complete 4 rounds, or six months, of chemotherapy. While it's a defeat, we always try to look for the silver lining. He still has options.


Sunday, August 13, 2017

“Success is not final, failure is not fatal: it is the courage to continue that counts.” - Winston Churchill

Josh finished out round 3 with his IV. Having the port has made this entire process more bearable. He actually doesn't mind the IV injections, which I think a huge part of it is his nurse that administers it. She is so very quiet and polite and over here you have loud mouth Hearndon with no filter and complete disregard to being appropriate. He really likes her but I think its mainly because she laughs at all of his jokes. She has a huge interest in his care though. Up in Maryland we LOVED his oncologist and his team, so this team down here had big shoes to fill. They comfortably slipped into our lives and have made this process so much more bearable. We told her about the nausea Josh is experiencing in the morning. She suggested to give him his pills at 530am that way when he gets out of bed at 8am he will still be under the care of the pills. It works and he hasn't thrown up since she suggested it. Really any problem we bring to them, they figure it out. If one person doesn't know they ask multiple people. We are never treated as a number, he is always seen as a person. We had his appointment with his oncologist last Tuesday and she said his counts were pretty low. He should be in the 100's and he's in the low 80's. She wanted us to redo his blood work as the previous one had been done a week prior and wanted to see if anything had changed. She called the next day and told us to delay chemo a week as his body has not bounced back from the previous cycle. This is expected and it was only a matter of time before this happened. It doesn't mean anything drastic, it just allows Josh's body to rest.

A week and a half ago we met with his new neurologist. He was super nice and we felt really comfortable in his office. Josh and him connected right away and that's always a huge plus for me. He did a full exam on him, bumped up some medications and added a new anti-seizure med to the mix. He agreed with me on my theory of sleep and seizures. The new pill is a sleep aid and a anti-seizure medication in one. Josh started it last week. He took one pill at night and slept through half of the night! Probably the best sleep he's had in so long. He stayed on the one pill for a few days then bumped himself up to two pills. It only equals out to like 14mg but adding the second pill has caused him to actually sleep through the night, something he hasn't done in a very very very long time. He usually gets up at 4-5ish to go to the bathroom, but he's back in bed and usually sleeps until 8am. The only side effect of this pill is that it makes him really groggy in the morning. I think he has slowly gotten used to it but couple days ago he was talking 2-3 naps a day. On top of the sleeping pills, he also has low counts so he is wiped out on a constant basis. Even walking to the bathroom he gets exhausted and has to sit down for a little. He is also experiencing wobbly walking. It's almost a mixture between zombie walking and drunk walking. I have become accustom to grabbing the back of his shirt to walk him around the house. I have been bringing the walker into the house so he can have some independence.

Cancer aside, everything is going pretty well. I am getting out more and leaving Josh at home with my dad. It's given me breaks but I desperately miss him while I am gone. We are always on constant search to do things while keeping in mind his exhausted state. Josh is now apart of a D&D group that meets at our house every other Saturday. It is perfect for him as it is in the comfort of his own home and the guys he plays with are super understanding of his condition and help him along the best they can. It makes me happy to see him happy.