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!