Thursday, March 19, 2015

Stupid Cancer

If anyone has followed my facebook the past few days you have seen a lot of post about my handsome hubby rocking some sweet cancer gear. I got introduced to by his support group corrdinator. I noticed, which it isn't hard to see, that Josh has a confidence issue since being diagnosed. He lost his hair. He gained weight. He constantly tells me "I wonder if people wonder what wrong with me. I am not missing a leg. As far as they can tell nothing is wrong. I wonder if they think I shouldn't be here." Many things like this are said to me on a constant basis. We live in an apartment building with many many people missing arms, legs, and even half of their body. So I can understand why my some what healthy looking husband wonders if anyone wonders whats wrong with him. His illness is invisible to those around him. I have even noticed when it comes to the booths set up around the building that hand out free stuff to the wounded warriors. Josh always gets over looked mainly because he isn't constantly in a wheel chair or missing limbs. It breaks my heart when he really wants to do something but they over look him because he looks healthy. They assume everything is okay. After months of noticing this, I couldn't take it anymore. I went online and have found shirts and hats that show support. I don't want my husband to walk around with a big sign saying "Hey look at me, I have cancer." But I want my husband to be treated equally. I want people to not take pity but to realize that just because his illness isn't visible, he is still a wounded warrior and he matters. Today he gained a little bit of confidence.

I have also noticed how, for a lack of better words, much of an asshole some people can be assholes towards him. My husband has NEVER used the cancer card. He will never ask for special treatment. He doesn't believe that anyone owes him something because he has cancer. That's never been him. It's never been me. We just don't do that. But people stare. People stare hard. I honestly think it would be better if they just came up and talked to him. But those people that stare don't have enough guts to do that. We went to a hockey game for our anniversary. Now, I have never had a problem with getting his pills in or a bottle of water. Never had a problem with explaining it was used for medical purposes. Hell, the WHITE HOUSE didn't care. They have four security check points and every single person understood and didn't give me any crap over it. But back to the hockey game. I had a water bottle in my purse, like I have done million times over. The same place that we had just gone to the previous week for a basketball game, took my husband's water bottle and threw it away. I was furious! I explained over and over, he needs it for his pills. He needs it because his weed pills give him dry mouth. And damn it, it's just water! It wasn't opened. It wasn't like I brought a case with me. It was one single bottle and she threw it away. She told me that I had to buy water. All $4.50 for a bottle. A BOTTLE. When I brought in a bottle from my house that was perfectly fine. But no. So after walking away, Josh goes "I really should have used the cancer card." Like I said, my husband is very passive. He avoids conflicts. Me on the other hand, I gave her a piece of my mind. Later that night I was laying in bed thinking how embarrassing it must have been for my 27 year old husband to have his wife fight his battles. I was a little embarrassed (not by much, it wasn't like I cussed her out..though I wish I would have!) and tried to think of a way for him to fight his battles in his passive aggressive ways. 

Behold, the literal cancer card! 

All I can do is laugh. Yes, it's a little crass. But people can be assholes, so why can't he be one too? I had to get a 100 of these suckers made, so you best believe we will be using them! 

One Step At A Time....

March 11th, we celebrated our fourth wedding anniversary. Anniversaries mean something to us. As a couple who has been together for almost eleven years, we still celebrate everything. This year was supposed to be different though. He was supposed to going through Chemo on the week of our anniversary and my birthday. We went in for his regular blood work and it came back, once again with low blood count. They had to delay Chemo because if he was to develop an infection, his body would not be able to fight it. His counts were not to low, you're supposed to have 100,000 and Josh was at 70,000. This didn't warrant any concern by his doctor, so we were able to celebrate as planned, just a little frustrated that it was delayed. For our anniversary we went out to dinner with a gift card that was given to us by my parents. Josh took his weed pill and though he ate everything in sight, he also got slap happy high and we had to go home, haha. For my birthday, we went out to Medieval Times, which was fun and he thoroughly enjoyed it. We went back this past Tuesday to re-do his blood work. His red blood cell count came back low, not dangerously low, but they didn't bounce back over the past week. His platelet levels went from being to low to being very high, which they call reactive thrombocytosis which is basically because he has healthy bone marrow that is over correcting for the chemotherapy. They put him on a week worth of baby aspirin that is used to prevent the symptoms of the thrombocytosis. This has put Josh two weeks behind on Chemotherapy, so fingers and toes crossed that we will be able to do cycle four this next Tuesday.

It's frustrating. After reading the email sent to us by his doctor about his current status, I sat in our car and cried. I am helpless. I literally can't do anything to make his levels even out and as someone who has been labeled a control freak, it's hard to accept things I have no control over. Even Josh is annoyed, he's frustrated that he can't get his own levels evened out. It's not something we can control, we know that. But delaying chemo throws our entire month off. We have to shift around appointments. Some appointments can't be moved, so if Chemo happens next week he will be taking his E6 exam in the middle of it. That's life, I guess. Josh has been ordered for a sleep study. Between Chemotherapy, Steroids, and just having a brain tumor, his entire sleep schedule has been out of whack since we arrived here. He did ambien, that did literally NOTHING for him. If I took one, I was out and slept for 10 hours or so. For Josh, he sleeps an hour and is back up for the rest of the night. He tried lunesta, which helps but is a pill you can't take regularly so there are nights when he get's no sleep at all. His doctor explained that it's very common with brain tumors. So we are waiting for the appointment to be made so we can get some more answers.

On to happier and positive news, two things happened this past week. Josh's MRI came back AND he celebrated his six month smoke free anniversary! First off, MRI. He has to do one every time before a chemo session. His MRI came back "normal" as he has no new growth. We were so happy! We realize (and I hope you, my readers, do too) that he will never be tumor free. He will always have this little sucker, but no new growth is good. It's just sitting there, next prayer is for it to start shrinking. As far as the smoking goes, YAY! Josh started smoking in 2009 or so. He is a social smoker, but still needed it at work. He rarely smoked at home, mainly because I can't be around it, also because he rarely needed it. But he was a smoker. By doctors orders he is not considered a non-smoker until six months after quitting, so he's hit that milestone! I do believe that he would take a cigarette right now if it was offered to him, but I think that's everyone who has dealt with an addiction. The even better thing is that he's basically done it cold turkey. He had the gum, only chewed it for a month. He had to stop it because it was making him sick. He switched to the lozenges, hated those. He only did them for a few weeks. He's done the patch, hated that. It was just easier for him to completely quit on his own and not be around those who do smoke. I never thought I would be so proud to say he's a non smoker at doctors appointments, but I am! I am so happy with the changes he made in his life, it makes me a very proud wife.

As far as me, I am still a work in progress. I am changing around therapist now as I couldn't stand the one I have. I do believe that sometimes it's good to shop around for therapist. You shouldn't be afraid to do so. For me, it's all about a comfort level. I have to click with you before I am able to tell you my deepest darkest secrets. I have had two in the past few months. Both of which I didn't click with. One that focused to much on my marriage and making issues that weren't there. And one that focused to much on me emasculating my husband (YES, she said that). I am not looking for a miracle worker. I realize that their job is to help me sort through my problems. But the advice they were offering me was unrealistic for a wife taking care of her husband who has cancer. Her big advice was to go Target by myself. Yes, I am going to leave a seizure prone person in a room by himself so I can go get away for an hour?! Uh no. Her other advice was that my life revolves to much around his cancer. UH EXCUSE ME?! You don't ever tell a mother that her life revolves to much around her child. You don't ever tell a career woman that her life revolves to much around her career. But because my husband has cancer, and I am his main care giver, its wrong that my life revolves to much around him? He is my life. He is my everything. So no, I don't work. I don't go out with friends. I don't go shopping by myself. I can't tell you guys the last time I got my hair cut. My nails are trashed and we won't even go into shaving my legs. Yes, I have let myself go. Before anyone says it, yes I know I have to make time for myself. I have to put my needs in there too and I do. I am merely stating all of this to give everyone an idea. But spend a day in my life where I am constantly caring for another human being and you'll see why. No, he's not in a wheel chair and he doesn't physically depend on me. But I try every day to make sure his days are easy and stress free. So if my house isn't clean. If the dishes aren't done. And if I didn't make it to Target by myself well then that's fine. Because I know my husband is happy. I am happy. And to me that is all that matters!

Sunday, March 1, 2015

Love & Basketball

Chemo..Chemo..Chemo..We made it through our third session. For some reason this session was harder to get then in the past. Josh did his blood work the day prior and it came back with low blood cell count. Could have been a minor infection, could have just been the previous chemo. Whatever the reason is, they delayed us a week. We were told to come back to do another blood test and hopefully we will get back on track. We also found out during this time that Josh is anemic, which could be the result of the cancer, the chemotherapy, or Crohns disease. Have I mentioned he has that also?! Yes, he does. He was diagnosed shortly before having the seizures last September. He is currently in remission. Fingers, toes, and all other body parts crossed, it stays away. They decided to put him on Vitamin D and Iron supplements to help treat the anemia. The following week, February 11th, he started his third round of chemo. They have figured out the right regiment of pills for Josh to successfully go through chemo without throwing up and we have formulated a strict schedule to help prevent it as well. It's all trial and error. We have changed medications so many times I am surprised the pharmacy doesn't hate us. However, I am forever grateful for the Oncologist he has and the team behind him.

I mentioned in my last blog how we planned to spend our Valentines day, with peanut butter and jelly sandwiches and movies in bed. We decided to splurge a little and actually ordered pizza from our favorite pizza place, but the movies in bed still did happen. He was awake for a couple hours, so we made the best of it. If you would have told past Josh and Jenna that this is how they would have spent their Valentines day, they would have laughed. Josh and I are not ones for going all out on Valentines day, but we do celebrate it. We make an effort of getting dressed up and go to a fancy restaurant and eat over priced food. It's fun and something we have always done. This year, things were different. We weren't the same couple, or even the same people we were last Valentines day. This year, we spent it in bed and then at ten o'clock, I gave my husband his nightly dose of Chemotherapy. It still amazes me how much our lives have changed. It still baffles people that this is our daily routine, that this is our life. All I can say is never take a day for granted. No, we didn't go to an expensive restaurant. No, we didn't shower each other with gifts. Yes, we spent it in our pajamas and in bed. Yes, I picked out my own flowers because my husband can't be left alone and he was in the wheel chair that day. But I spent my 10th Valentines day with my husband. To me, that is a win.

For everyone that is friends with us on Facebook knows that Josh was prescribed medical marijuana! For those who care to know why and how it all happened, continue reading. For those who don't, just know..YAY WEED!

Josh has always loved food. I am in no way exaggerating this, this kid LOVES food. In his list of things he loves in life, I'm sure it goes Food, Me, Archie, and Video Games. I am also in no way pointing out how..plump my husband has become, that of course has been the steroids he has been on for the past five months (that they JUST removed him from a couple weeks ago). No, this is a love story between Josh and food. I can remember so many times in high school where he would eat dinner at his house and the come to mine and eat dinner again. I always called him my bottomless pit because he was just that. Being military, he has been in shape, so this wasn't a problem. Since starting Chemotherapy though, my bottomless pit became a  "I've eating five grapes and I'm full for the rest of the day" kind of person. It was frustrating. I kept pushing food on him. I would make his favorite foods, he would eat a couple of bites and be done. I went out and bought junk food. I figured if he ate that, at least he was eating and that's all I wanted. During Chemo week, he would eat a banana a day. Literally, that was all he was eating. He would maybe (and that's a strong maybe) eat a peanut butter and jelly sandwich. After Chemo week, you would think he would be stuffing his face, unfortunately that wasn't the case. I pushed food, he rejected. This past session, I mentioned this to the Master Chief in charge of Navy Wounded Safe Harbor, he mentioned getting prescribed weed. This NEVER occurred to me. I mentioned it to my parents, they pushed me to ask his doctor. We were nervous asking for it, he's still active duty so we assumed he would be laughed at and told to just deal with it. We decided to ask his primary care doctor, he's very chill and laid back, figured it was the easiest person to ask. We had a whole scenario planned out, what exactly we were going to say, what our argument would be. We practiced it over and over. We went into the appointment. He asked Josh how he was doing...Josh's answer "ehh, i'm okay. i rarely eat, which I know isn't normal..I have a banana a day and I'm full for the rest of the day..." Doctor: "okay, you want weed?!" Wow, it was SO easy! He wrote the prescription, Josh and I walked out completely relieved and yes, we made a ton of stoner/weed jokes the entire day. We still do. He took his first dose and ate an entire meal. Last night he took two pills (which he is allowed to take up to four a day) and wouldn't stop eating! I was so incredibly proud of him. It is THC in pill form, so he doesn't smoke it. It is purely used to give him the munchies, as it is used to help patients with anorexia. He get's a little high, which is just completely fine by me. He's eating somewhat normal again, he still eats a banana/yogurt every morning. He might pick at lunch. But dinner is where it is at. It's amazing that something so small as just eating would mean the world to me. I get so happy when he finishes the food on his plate, it makes me a very happy wife!

I mentioned in my last blog how I was getting therapy for mental health. I am happy to report things are slowly getting better. I was given some "happy" pills that seem to be doing their job. Josh has seen a difference, I have seen a difference. I am getting therapy once a week and it's a great outlet for me to just verbally dump my problems on someone other than my husband and parents. I am working through it all and though it's taking time and it's mentally exhausting, I am doing better. I am open about it mainly because I feel like no one really is. Depression is something no one wants to talk about, notice, or just deal with. I strive every day to make sure my husband is happy, it took me a while to realize that in that process I wasn't happy. It took me a while to admit it and get help for it. I am a work in progress but I am working on it every day.

On a happier note, Josh and I got tickets to the Washington Wizards vs Detriot Pistions game last night. We love going to sporting events and always take the opportunity to do so. These tickets were given to us from his support group, Young Adults with Cancer. We had a fun time, it's no where near as exciting as hockey but it was fun to try something new!