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 "'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.

They see me rollin' / they hatin'

For those who don't know, Josh currently owns two wheelchairs and a walker. He has a favorite of the two wheelchairs as one is way better than the other. In any given time there is usually a wheelchair or the walker in the trunk of our car. Usually it's the wheelchair when we are doing exhausting activities (i.e aquariums, zoos, and long shopping trips) and we use the walker when he's just running errands with me, going to appointments or just wants the general extra support. He is in no way completely reliant on these devices but they help in more ways than just one. Shopping trips for groceries or normal day to day stuff is usually done by using a motorized cart at the store. My husband has used these devices for many, many months. Weather permitting, he often used his wheelchair up in Maryland. Have any of you pushed a grown ass man up a hill in a wheelchair IN snow? I have and let me say, it was by far one of worst thing I have done.

But I have digressed. So yes, my husband has had his fair share of time spent in a wheelchair or walker. Even after months and MONTHS of doing this, Josh is still self conscious about it. (Sorry honey, I'm putting you on blast lol) It primarily depends on the store (Target, Publix, even Walmart) whether or not he gets the stares. He might get the glances and the questioning looks, but not to many people stare. If we are at the VA, he's in company of wheelchair riders as many of those people there are over 50 years of age. I don't tend to notice the glances or the side ways looks as I tend to pay more attention to Josh. In my mind it's just a freakin' wheelchair for crying out loud. Who hasn't seen someone in one?! Often times you would think Josh is a mythical unicorn or something based on the looks we get. Yes, we might be exaggerating a little and being a tad bit dramatic but it's like walking into a room after you know people had just been talking about you. We notice it and we know people are stareing. It almost gets to the point where Josh hates using it in public even though he knows he depends on it. Though no one flat out is rude about him being in one, we do get the annoyed glances when he takes up the whole aisle. We do get the annoyed sighs when he is taking to long time going down a crowded aisle. I often have to go ahead of him to clear the end of the aisle so he doesn't hit anyone not paying attention around the corner. I have had to leave him at one side of the store because he couldn't get down the aisle due to to many people or the fact that the isle wasn't designed for him. So you get it.

*Sushi has nothing to do with this story, it's just a cute picture of my husband haha!*

Yesterday we went to the commissary. Money isnt' tight but I was looking to get a deal on things I rarely buy but needed. Its usually just Josh and I doing these commissary trips but yesterday my dad said he would push Josh so my mom and I could shop. I greatly accepted his offer because shopping isn't fun and shopping with a wheelchair is even worse. My dad pushed Josh in his personal wheelchair while my mom and I filled up our cart. The commissary was pretty busy considering it was a Saturday but everyone walked around Josh and we really didn't have to many issues. When we were ready to check out we decided to use the handicapped lane as Josh was in a wheelchair and we thought it would go faster than a normal one. When we pulled up, we noticed that the people in front of us had two carts full of groceries. Normally, this doesn't bother me. I usually bring out my phone and enjoy the few minutes I have to wait. I am never THAT person that complains in lines, it's really not that big of a deal. However, this particular lane was designed for handicapped patrons. It had multiple signs saying who was allowed in this lane, which you guessed it, had to be handicapped. This included those in wheelchairs or motorized scooters. Now I get it. I am well aware that they could have had someone with them who was handicapped but I honestly didn't even look for that. I also get that the cashier was probably allowing them to go in her lane because it was busy and she didn't have anyone waiting on her. Again, didn't really care. The cashiers changed when we started putting our stuff on the belt. While the lady rang up our groceries, I walked over to Josh to get the tip for the baggers.

When I got back, I noticed that my mom had tried to pay for our groceries. There is always that chances that you get someone who doesn't care and allows anyone to pay as it has happened to us a few times. Those chances are few and far in between but they do happen. The lady refused my mom to pay. Cool, I get it. I walked over to Josh to get my wallet out of my purse he was holding. I walked back over to the register, ready to pay. The cashier told me that I was not allowed to swipe my card as I was not the ID card holder. I told her I understood, that it was my husband but since he's in the wheelchair I was going to pay. She refused to let me pay and kept saying that Josh had to pay. I told her that there were to many people standing where we were and it would be hard to have him get all the way back over here to swipe his card. She told me to have him get up out of the wheelchair and to have him walk over to swipe it. I think my exact words were "Uh WHAT?!" I told her he wasn't in the position to get up as he was on chemotherapy and it's wrecking his body. He's wobbly when he walks and he gets exhausted just walking to the bathroom. I wasn't even arguing with her. I was just more confused as to why she was asking him to get up and walk over to swipe his card. She kept asking me where my ID was and I flat out told her I don't have one and it's none of her business as to why. (Getting an ID is number 2034039 on my list to do. It's so low that I really forgot about it for so long. Josh's treatment and health is my number one priority, not a piece of plastic that allows me to shop there) After going back and fourth she allowed me (yes, very condescendingly I might add) to pay only after the lecture she gave me on policy AND loudly asked the assistant manager if I was allowed to pay. I paid and then walked away completely frustrated.

Like many military families, we have used our fair share of commissaries. I know their policies and I am well aware of why they are implemented. My whole complaint is based solely on the fact of the people in front of us. Again, I don't remember seeing anyone in wheelchair in their party but I'm fairly certain that they were just using the lane because it was open. If that rule could be bent, why couldn't the one regarding us paying. I get that the ID holder has to pay. I understand that, but I had his card with his name on it. He was present and gave me the authorization to use it. I could see if he left and went to the car or something but he was visible to her. My chief complaint though is that she actually told me to have him "walk over here" and swipe his card. Granted, she might have not meant it in a literal sense, more of a figurative sense, but still. I am well aware he is not wheelchair bound and if we really wantd to get him to walk over he could have but he gets exhausted walking to the bathroom. We are not ones to as for sympathy. I'm not writing this to cause a stink or to act like we are entitled to anything. I hate getting hand outs and we never expect anything to be given to us just because he was in the military. Or just because he has cancer. Or just because he's in a wheelchair he doesn't need but relies on. I'm not writing this for anyone to feel sorry for us. I didn't make a formal complaint at the store but the more I thought about it, the more I decided that I had to say something. I wrote in a comment card to the commissary, something I NEVER thought I would ever do. I'm not expecting anything out of it and it will probably fall on deaf ears but I felt as if it was my right to stick up for Josh. As many of the patrons at the store are retired military and a vast majority of them are 60 and up, I couldn't imagine if something like this was said to one of them. Or to someone, god forbid, that had no legs and was asked to "stand up to swipe their card." More than anything, she probably looked at Josh and just assumed there was really nothing wrong with him. She probably assumed he had a bum ankle or wasn't able to walk due to a minor condition or that he was just being lazy. I can't hold it against her, as he doesn't need a big ass sign saying whats wrong with him to be able to be a wheelchair. But he also doesn't need people assuming there is nothing wrong with him based on the fact that he doesn't look like anything is.

Friday, July 21, 2017

life is messy / love is messier

It's lightly raining outside and I have Pandora quietly playing in the background while Josh is taking a nap. I figured this would be the perfect time to sign onto Josh's computer and write a blog post! My last post was May....MAY! As it is now July, I realize that I completely skipped the entire month of June! As of the last blog, I wrote about Josh's birthday, so that's where I'll pick up for this one. June 2nd we celebrated my husband's 30th birthday, the big 3-0! I didn't want to overwhelm him with to many activities so I kept it pretty chill. We spent the morning playing mini golf with his parents. We then went to Ron John where we were complete tourist and bought Ron John shirts and other crap we didn't really need but bought anyway. We got caught in a monsoon of a storm. I would like to say I am being dramatic about that, but it was probably the worst storm I had seen in a long time. The worst part was that we were beach side and apparently their drainage sucks there because the roads were completely flooded. Because of that, it took us a lot longer to get home then usual but we made it. Josh immediately went to sleep and ended up napping way into the afternoon. Later that night, we had my parents, his parents and my brother come over for Procarbozine Tacos (lettuce tacos as some of you know them as) and Key Lime Pie (not that Josh can't have cake, he just REALLY loves Key Lime Pie!). We played Cards Against Humanity and were laughing until our belly's ached and we had tears in our eyes. It was a perfect birthday, nothing to over the top but just right.

During June, Josh was on cycle 2 of his chemo regiment. Out of the three types of chemotherapy he is on, he tolerates two of them pretty well. The Lomustine, which is 4 pills to start the cycle, is a piece of cake. He takes them all at once (or shotguns them as we call it, lol) and while he can feel them sitting in his stomach, it really doesn't offer up many side effects. The Vincristine (IV Chemo) is pretty easy to do now that he has a port. It's a 10 minute IV and really offers up no side effects aside from Josh being pretty tired afterwards. The Procarbazine though is the one that kicks him in the ass every cycle. This pill is two weeks long and comes with the strict diet. The diet itself we have figured out and we essentially eat the same things for two whole weeks but it's food I know won't make him sick. The last cycle, Josh experienced minor seizures. This cycle, he experienced some more and we once again ended up in the hospital because of them. He had one late one Thursday night and early Friday morning. (I see a pattern in them. They usually happen around 10pm or 3am and they often happen on a Thursday or Friday night, typically at the end of his procarbazine cycle.) My rule is; if he has three within 24 hrs, we go to the hospital. Essentially all Friday I was prepared for more. He ended up having one while he was taking the dogs outside that Friday morning. This one was odd because he was fully awake and standing outside. He felt it coming on and he was able to lean against the door and go through the more intense part of the seizure. I was out front in the garage with my Mom and just happened to look into the dining room where I saw him walking inside essentially looking like a zombie. I knew right away what was happening but I was completely shocked that he was WALKING during a seizure. I was able to grab him and walk him to the chair. He rebooted and came back to me. He swore up and down that he was outside with the dogs for thirty minutes, when in fact it was only a minute or two.

He took it pretty easy for the rest of the day. I should have followed my rule, 3 in 24hrs, but I didn't. He was exhausted and just wanted to sleep, so I let him do that. He woke up around 4pm that day and came out to the living room to watch TV with me. We were watching a show and while I was laughing at it, I looked over at him and his thumb was in a continuous loop on his phone and he was completely checked out...seizure number 4 had just happened. He fought so hard, but I ultimately dragged him to the hospital just to get checked out. We went to Holmes because they have a neuro surgeon on call in case he had a brain bleed. Surprisingly we got right into the ER and Josh was admitted within 30 minutes. They wanted to run a bunch of tests (x-ray, ct scan, blood work) and wanted to rule out a bunch of causes. All while this was happening, I held my tongue because I knew what was causing the seizures, it's the tumor. Even though I knew this, I also knew that four seizures in one day is not normal and I wanted to be in place that I knew could help him if more were to come about. While waiting for the results to come back, Josh had yet again, another seizure. After this one, the nurse gave him some Lorazepam and he passed out from complete exhaustion. Since then, he has had one or two seizures, nothing to crazy and definitely not in the same day. Five seizures in one day isn't his record, but it's pretty close.

Often there are times where I have to put the wife hat away and put on the caregiver hat. This is one that I really don't like. As his wife, I want to respect him and his decisions he makes. As his caregiver, I have to put my foot down and force him to do something he doesn't want to. It breaks my heart every time. While I was getting him dressed and dragging him to the car to take him to the hospital, he was being very spiteful. In the mess of it all, I'm sure he said he hated me. I took five seconds in the closet and balled my eyes out. It was a mixture of what he was saying to me and the fear I had about the entire situation. I finally composed my self, wiped my tears away and walked to the car. During the car ride he apologized a million times over and he helped heal my broken heart. It's difficult at times, separating the two roles I play. We often forget what it feels like to be married. We often forget that we are husband and wife, not just patient and caregiver. It's those moments where we forget that I hate this cancer so much. But it's often in those moments that I am reminded of the sweet, loving, caring man I married and I am grateful for everything I have in that moment.

On June 16th, Josh finished his second round of chemotherapy. He received his blood work results and they showed that he is anemic, completely expected. In his time off between cycle two and starting cycle three he beefed up (literally) on red meat, fish, spinach, and pretty much anything else he could get his hands on, haha. The two weeks off between chemo are like heaven. We can eat what we want, when we want, and we can even go out to eat if we want! During the cycle, while on the diet, we have been known to fantasize about food. I have seen Josh salivating over a Taco Bell or a Red Lobster commercial, lol. While I am not completely locked into this diet, I try really hard to basically eat whatever he eats. Though I do sneak a piece of cheese or a piece of chocolate from time to time, I really try hard to not eat anything he doesn't, especially right in front of him. The diet is so strict, his heart breaks if I eat something he can't and I feel bad when I do. I learned my lesson to not even mention it if I do eat something he can't. It's a disappointment he can't handle. Sounds dramatic? It is, this guy LOVES food haha.

Cycle number three started on June 30th. He shotgunned his starter pills and did his IV on July 7th. So far, so good. He ended procarbozine last night and is counting down the days until he can have "real food" again. We typically era on the side of caution when he ends procarbazine. He usually waits a week or so before eating something off of the diet because the pills are delayed acting and are still in his system. We have been trying to get his random seizures under control. We are in the process of switching neurologist (once again..third times a charm, right) and in the mean time his oncologist gave us a prescription of Lorazepam (ativan) to use at home to control them. It's the lowest dose you can get and he only takes them when he's had a seizure or he's having a tough time sleeping. We are starting to realize that seizures often come on days when he hasn't had adequate sleep. We finally were able to make an appointment with a non-Va neurologist and he's local to us. We are meeting with him next Thursday and hopefully he can help us in figuring out what is going on with the seizures. It could just be a small bump up in his medication but we shall see.

On a completely unrelated note, I'm sure many of you have noticed Josh's unusual poses in these pictures. What started out as just a joke, has become something he's done in every picture dealing with cancer. While it's offensive to some, to us it is so much more. It's crude, yes, but have you met my husband?! He swears like a sailor and has the dirty mind of a teenager. It's also a huge eff you to cancer. While we were doing Josh's dream day offered by Living the Dream, we were introduced to the company Fxck Cancer. If you haven't yet, check them out. I'll leave a link right here. Their motto is "We are sorry if you are offended or have a problem with the word fxck. We are offended and have a problem with the word cancer." It was in big letters on a banner above their booth. It was a great quote and an even better motto. Josh has taken that and put that in the pictures I take of him doing cancer related stuff. It's not to offend anyone, it's humorous and it's a way for Josh to give a big eff you to this disease.