Tonight I am sitting in a nice warm house, my hands curled around a mug of hot peppermint tea, listening to my hubby and puppy snore. I know our baby girl is enjoying time with her grandparents and cousins, and is safe and sound. The perfect Christmas tree that the three of us picked out together is lit and strung with beaded garland, ready for the ornaments. Tonight I am blessed.
A few days ago the Major and I were shopping, enjoying an afternoon together after the first of many cyber knife treatments on brain lesions. That day I had asked the radiation oncologist to be totally honest with me as to where she thought hubby was at as far as the disease went. Of course there is no clear cut answer, there is no absolute in dealing with cancer, or medicine for that fact. Every patient is different. I know that. I looked her straight in the eyes and asked her to go off the record. I knew how dangerous that was, but I had to know. I got the answer I kind of knew I was going to get. It just hit like a ton of bricks to have it said aloud. There is always hope, and I know we're in the best place to find something else that may work better if this treatment isn't doing what it should. We still have to wait and see how the treatment worked before they can say for sure what both of us are thinking. It eats away at you.
Back to shopping. The Major was looking at Pandora, picking out charms with me as we had done in South Carolina when I got my necklace. This time he was looking at a bracelet. All of a sudden I hear Avril Lavigne's When You're Gone. This song was on repeat on my iPod for my walks during deployments, and now I can't bear to hear it. The words, the sadness...during deployments I always knew he was coming back. Sure I was afraid for his safety and his life, but I knew he'd come back. Now this. This cancer. It's different. And those words hurt way too much. The Major had to walk away from the counter. Ever the military man he does not show emotion in public. Even with the steroids some how he is able to keep emotions in check when around strangers. I was left standing at the jewlery case with the very sweet sales girl, tears streaming down my face having to explain that my husband has terminal cancer and this may be the last bracelet he buys me. Set off panic attack number 1 of the day.
We were able to enjoy lunch, finish shopping and come home to nap. The Major was tired from therapy and I from anti anxiety medication and the stress of the day. One bonus to our daughter being on vacation with her grandparents is naps. I love sleep, and am so thankful for the chance to nap!!!
Panic attack number 2 came at a more usual time for me. Bed time. I look over at his face and the thoughts that race through my head are too much. Everything from "Why is this happening?" to "What are we going to do?", "It should be me, he's the better parent, the better person...", "I hate the Army for missing this", "Maybe God will perform a miracle and he'll be ok"...and my body fights my brain and the two scheme together to get me to the point where the person with the awful disease is consoling me. How dumb is that? Talk about needy and selfish. But he's the only one who was ever able to talk me out of a panic attack. And when I think about that, it sends more tears.
The next day I had pulled it together. Usually after having one bad day I can keep in control. I go back to being the secretary, the assistant, the protector, the medical aide, the translator, the mama bear...level headed, calm and just slightly scatter brained.
The Major decided we needed a date that night and took me to see the new Bond film. I love seeing his face when he's watching a movie he's been so excited to see. I am partial to Pierce Brosnan, but I suppose even Bond needs to change every once in a while. With that said, this was probably my favorite Daniel Craig Bond film.
As the credits were rolling and we sat together wondering what the next bond would be like with the changes they made in this movie, the tears welled up and the lump in my throat appeared. Would he be here for the next Bond film? Is this the last time I will watch a new Bond film with him?? I swallowed every emotion and got ahold of myself before the lights came on. I couldn't keep doing this to him.
Today, during his treatment, I was able to talk to some people who specialize in dealing with families and patients fighting cancer. Finally, people who said things that I think all of the time. People who made me realize I'm not so crazy. People who want to help our family enjoy our time instead of being bitter, angry and just plain miserable. It's going to take work for all of us. This is not something to get over. This is something to learn to live with.
Tonight, as we strung lights together around our beautiful tree, those thoughts started to fill my head. Is this our last Christmas tree? I watched him stand and admire the lights, the sparkles and shimmers, and take in the smell of a fresh tree...and at that moment I chose not to worry about next year. Not to worry about 5 years from now. I have him now. I have him this Christmas. I have him this New Year's. Even though his body is fighting this terrible war, one that has changed his body, his moods and what he can and can't do...he's still there. He's still the man who grabbed my arm when I tripped and said "Don't worry, I'll catch you if you fall". He's still the man who opens doors, pulls out my chair, knows every look, makes up silly words to my favorite songs to get on my nerves. He's still our daughter's Daddy, her hero and the love of her life. So every day I need to wake up and be thankful for another day. Not worry if we'll have a tomorrow.
Wednesday, November 28, 2012
Monday, November 19, 2012
A different kind of PCS.
I haven't written in a few months. Honestly the last time I was writing, I believe I had a draft started about our new duty station. We were all so excited, just a week after the Major got home from a year long deployment, we were so happy and giddy. Seattle was to be our next destination. There was a new command and the Major was looking forward to a faster paced, more challenging job. I was drooling over the on post housing. Looking at trips to Mt. Rainier, Mt. St. Helens, Pike Place Market...I was so happy, and not even the rain could scare me away. We were leaving -60 degree, 8 month winters...a new adventure, a new place to explore, and best of all - no deployments for 2 years.
A little back story before we get into how this all changed. A few weeks before the deployment, my husband had gone to the clinic to have his toe looked at. It had been sore and bleeding. He had always had problems with ingrown toenails, but this was different. The clinic sent him to a civilian pediatrist in town, who determined he would remove the toenails, two days before deployment. Two days later the Major left with a bandaged and very sore toe. A month later when we were finally able to talk, he told me his toe had been bleeding ever since he left. I begged him to get to the doctor as soon as possible. He did as I asked and they temporarily "fixed" the problem. However, living in boots, walking in the desert, only being able to shower every so often, it had to be fixed over and over and over. A few months into the deployment, he came home on emergency leave for me as I was having medical issues. While he was home he asked me to look at a lump in his neck, close to his spine. I asked him to go to the clinic to get it checked out because it was painful and he was unable to turn his head. They told him they weren't going to touch it because of the proximity to his spine. After going back to Afghanistan, a friend, who is a surgeon, took it out for him since they were at a Forward Operating Base and had limited access to high tech medical equipment. There was no way to get it sent away for pathology.
A few months before returning home, he told me he was getting more lumps all over his body. Again, I asked him to see the doctor. The doctor told him not to worry about them, they were probably just benign cysts, and there were more immediate concerns with wounded soldiers that needed addressed. They would be going home in a few months and just deal with it.
After the Major returned home, the clinics were packed with the returning Brigade. One night I noticed that the lumps had turned to bruises and they were very painful. I took him to the emergency room. As an EMT of 10 years I knew the flack I was going to get for this. I knew it probably wasn't a true emergency, but I was scared, and so was my husband. After getting lectured by the PA about how they aren't a clinic and how we shouldn't worry about simple epidermal inclusion cysts, I felt helpless. My husband is young. No medical history, no meds, no drug, tobacco or alcohol use. Just being in the military for 11 years and being sent to many strange countries. Thankfully, she sent for a consult with dermatology. A few days later he had a CT scan of his belly, back and chest. They called him back for one on his head. After that we saw the dermatologist. I am convinced I met the two most kind, generous, intelligent and patient Army doctors there at Ft. Wainwright in those days. The dermatologist recommended he have some lumps removed and biopsied by the general surgeon who was going to do his hernia repair...oh I forgot to mention that he had a double hernia from the deployment. The general surgeon was the other wonderful doctor I was speaking of.
They took three lumps. A few days later, we were called to come in for the results. I can't explain the exact way my world turned upside down, inside out, and all together just crashed to the bottom of some dark abyss when the words "stage 4 melanoma" were uttered. I'm young, I haven't seen everything in the medical field, but I knew exactly what those words meant. It was all too fast. We were whisked to the dermatology suite, talking with the doctor and I broke down. I had to leave the room because the Major was still processing exactly what he was told. In a matter of hours the orders were being changed. We were no longer going to the most awesome assignment either of us could have hoped for. We were being told to "go home" "go be with family" "go somewhere you will have support". I sobbed uncontrollably for hours. No grace, no rationale, no reason...just complete and utter sorrow and panic. I just got him back. I JUST GOT HIM BACK!!! What do you mean he had an incurable cancer??? HOW??
Yes, I wanted to know how. We were flown out of Alaska, forced to leave all of our belongings, selling both vehicles, and leaving the house for rent, to fly for treatment to begin right away at Hershey Medical Center in Pennsylvania. After a few consults it was determined the Major has a rare type of melanoma, toenail based melanoma. Melanoma is one of the deadliest cancers. It isn't comparable to any other cancer. Toenail based melanoma is so rare, not many people know about it, not many doctors look for it. Even when you have a toe that bleeds with a tumor in the nail bed for over a year. Even when you get lumps in your lymph nodes. This is a point of bitterness for me, I place blame on a few choice people in the Army, as well as one civilian foot doctor.
Once established in PA, Chad started treatment. The first was a gama knife surgery to treat a lesion in his brain. The second was called Interleukin 2, or IL 2. This was the absolute worst thing I have ever watched a person go through. It was so absolutely horrible, I though it had to work. There was no way any human being could go through all of that and not have it work. 7 days of 3 rounds of treatment a day. Treatment that caused high fevers, low blood pressure, hard and vigorous rigors, vomiting, diarrhea, mood swings, confusion, weakness, and bloating. Both times he had it, he got through 12 out of the 14 treatments. This was very good. The PET scan that followed was not so good. It was time for the next type of treatment. This is when we decided to move to Maryland and start going to Johns Hopkins.
I had been getting very frustrated with the lack of urgency I felt at Hershey. Things were moving slowly. I needed someone to be serious about TRYING to save my husband's life.
In the months we were going through all of this, I had started working at my old EMS company again. It was the one thing that gave me a release. Something that took me out of the stress of what was becoming my normal life and let me focus on others. I met a few new friends, and reconnected with old ones. The major and the little one were watched over at home by family while I was away and I was making some extra money to help make up for what we lost in BAH moving from Alaska.
Soon after transferring to Johns Hopkins, hubby started having minor seizures. It was time to give up my regular hours at work. He was not supposed to drive or be left alone. Again, it became more real. I don't know how to explain that. It had just seemed like we could escape it for bits of time. Every time something gets worse, you feel yourself loosing your footing and things change all over. The steroids they use for the swelling in his brain make his personality different and he can't help it. The thing that kept me normal is gone and we have to adapt and overcome again.
There are things I think about daily. I find it hard to relate to people. I have a terrible time being happy for newly weds. I cry when I see elderly people holding hands. I break down when our 4 year old asks if Daddy is going to live with God. I don't look past the present day. I focus on the hour I am in, because the next hour could be better or worse. Sometimes much worse. I go through anger and bitterness, sadness and angst. I find minor complaints from others so irritating that I wish they could see this, just for a minute. Feel it just for a minute. I don't want to think 20 years down the road. I don't even want to look 5 years down the road.
I will say I appreciate the true friends. The family. And the permanent military family we have established over the years. You all have been so gracious and kind, supporting and loving. We appreciate all of the prayers, all of the help, everything. I do hope for a miracle. I hope the current treatment takes the lesions away. I hope the next cyber knife procedures get rid of the brain lesions. I hope they find a cure for melanoma. I hope he goes into remission. Every day this is what I hope for. I don't hope for a new car, more money, a night out, super deals on Black Friday. I hope for normalcy. I hope for another year with my husband. I hope for a few hours with the man I know and love, that the medication eases up for a while and lets me get a glimpse of that man. I hope my daughter remembers good days, and doesn't become afraid of her father. What I hope for anymore is so far off from what other people do. People say I'm irritable or I'm just not myself. That is correct. I am not myself. My heart is ripped to shreds and I do the best I can every day for my little family. There is no want for pity or attention. As much as I know people mean it when they say they are praying or they offer their help, I wish it didn't have to be that way. I have unfortunately realized I can't do this without help anymore. That isn't our family. We are a military family, self sufficient and tough. We made it through two Alaska winters, have moved 10 times, and been through countless situations. I do chest compression like a boss and can still hold someone's hand after they have puked all over me. I stay calm as someone is screaming in my face because of the horror they had just witnessed and still treat a patient after they have swung their fist at my face. This, this cancer, is something so awful, so new, so uncontrollable, I feel as though I am failing because I can't beat it for him. He can't shoot it with a gun or drop a bomb on it. He can and DOES fight. And there are days I have to remind him why he fights. I never had to remind him why he fought for America.
That's all I can do is believe in him, hope for tomorrow, and take care of my family. Nothing else is up to me.
A little back story before we get into how this all changed. A few weeks before the deployment, my husband had gone to the clinic to have his toe looked at. It had been sore and bleeding. He had always had problems with ingrown toenails, but this was different. The clinic sent him to a civilian pediatrist in town, who determined he would remove the toenails, two days before deployment. Two days later the Major left with a bandaged and very sore toe. A month later when we were finally able to talk, he told me his toe had been bleeding ever since he left. I begged him to get to the doctor as soon as possible. He did as I asked and they temporarily "fixed" the problem. However, living in boots, walking in the desert, only being able to shower every so often, it had to be fixed over and over and over. A few months into the deployment, he came home on emergency leave for me as I was having medical issues. While he was home he asked me to look at a lump in his neck, close to his spine. I asked him to go to the clinic to get it checked out because it was painful and he was unable to turn his head. They told him they weren't going to touch it because of the proximity to his spine. After going back to Afghanistan, a friend, who is a surgeon, took it out for him since they were at a Forward Operating Base and had limited access to high tech medical equipment. There was no way to get it sent away for pathology.
A few months before returning home, he told me he was getting more lumps all over his body. Again, I asked him to see the doctor. The doctor told him not to worry about them, they were probably just benign cysts, and there were more immediate concerns with wounded soldiers that needed addressed. They would be going home in a few months and just deal with it.
After the Major returned home, the clinics were packed with the returning Brigade. One night I noticed that the lumps had turned to bruises and they were very painful. I took him to the emergency room. As an EMT of 10 years I knew the flack I was going to get for this. I knew it probably wasn't a true emergency, but I was scared, and so was my husband. After getting lectured by the PA about how they aren't a clinic and how we shouldn't worry about simple epidermal inclusion cysts, I felt helpless. My husband is young. No medical history, no meds, no drug, tobacco or alcohol use. Just being in the military for 11 years and being sent to many strange countries. Thankfully, she sent for a consult with dermatology. A few days later he had a CT scan of his belly, back and chest. They called him back for one on his head. After that we saw the dermatologist. I am convinced I met the two most kind, generous, intelligent and patient Army doctors there at Ft. Wainwright in those days. The dermatologist recommended he have some lumps removed and biopsied by the general surgeon who was going to do his hernia repair...oh I forgot to mention that he had a double hernia from the deployment. The general surgeon was the other wonderful doctor I was speaking of.
They took three lumps. A few days later, we were called to come in for the results. I can't explain the exact way my world turned upside down, inside out, and all together just crashed to the bottom of some dark abyss when the words "stage 4 melanoma" were uttered. I'm young, I haven't seen everything in the medical field, but I knew exactly what those words meant. It was all too fast. We were whisked to the dermatology suite, talking with the doctor and I broke down. I had to leave the room because the Major was still processing exactly what he was told. In a matter of hours the orders were being changed. We were no longer going to the most awesome assignment either of us could have hoped for. We were being told to "go home" "go be with family" "go somewhere you will have support". I sobbed uncontrollably for hours. No grace, no rationale, no reason...just complete and utter sorrow and panic. I just got him back. I JUST GOT HIM BACK!!! What do you mean he had an incurable cancer??? HOW??
Yes, I wanted to know how. We were flown out of Alaska, forced to leave all of our belongings, selling both vehicles, and leaving the house for rent, to fly for treatment to begin right away at Hershey Medical Center in Pennsylvania. After a few consults it was determined the Major has a rare type of melanoma, toenail based melanoma. Melanoma is one of the deadliest cancers. It isn't comparable to any other cancer. Toenail based melanoma is so rare, not many people know about it, not many doctors look for it. Even when you have a toe that bleeds with a tumor in the nail bed for over a year. Even when you get lumps in your lymph nodes. This is a point of bitterness for me, I place blame on a few choice people in the Army, as well as one civilian foot doctor.
Once established in PA, Chad started treatment. The first was a gama knife surgery to treat a lesion in his brain. The second was called Interleukin 2, or IL 2. This was the absolute worst thing I have ever watched a person go through. It was so absolutely horrible, I though it had to work. There was no way any human being could go through all of that and not have it work. 7 days of 3 rounds of treatment a day. Treatment that caused high fevers, low blood pressure, hard and vigorous rigors, vomiting, diarrhea, mood swings, confusion, weakness, and bloating. Both times he had it, he got through 12 out of the 14 treatments. This was very good. The PET scan that followed was not so good. It was time for the next type of treatment. This is when we decided to move to Maryland and start going to Johns Hopkins.
I had been getting very frustrated with the lack of urgency I felt at Hershey. Things were moving slowly. I needed someone to be serious about TRYING to save my husband's life.
In the months we were going through all of this, I had started working at my old EMS company again. It was the one thing that gave me a release. Something that took me out of the stress of what was becoming my normal life and let me focus on others. I met a few new friends, and reconnected with old ones. The major and the little one were watched over at home by family while I was away and I was making some extra money to help make up for what we lost in BAH moving from Alaska.
Soon after transferring to Johns Hopkins, hubby started having minor seizures. It was time to give up my regular hours at work. He was not supposed to drive or be left alone. Again, it became more real. I don't know how to explain that. It had just seemed like we could escape it for bits of time. Every time something gets worse, you feel yourself loosing your footing and things change all over. The steroids they use for the swelling in his brain make his personality different and he can't help it. The thing that kept me normal is gone and we have to adapt and overcome again.
There are things I think about daily. I find it hard to relate to people. I have a terrible time being happy for newly weds. I cry when I see elderly people holding hands. I break down when our 4 year old asks if Daddy is going to live with God. I don't look past the present day. I focus on the hour I am in, because the next hour could be better or worse. Sometimes much worse. I go through anger and bitterness, sadness and angst. I find minor complaints from others so irritating that I wish they could see this, just for a minute. Feel it just for a minute. I don't want to think 20 years down the road. I don't even want to look 5 years down the road.
I will say I appreciate the true friends. The family. And the permanent military family we have established over the years. You all have been so gracious and kind, supporting and loving. We appreciate all of the prayers, all of the help, everything. I do hope for a miracle. I hope the current treatment takes the lesions away. I hope the next cyber knife procedures get rid of the brain lesions. I hope they find a cure for melanoma. I hope he goes into remission. Every day this is what I hope for. I don't hope for a new car, more money, a night out, super deals on Black Friday. I hope for normalcy. I hope for another year with my husband. I hope for a few hours with the man I know and love, that the medication eases up for a while and lets me get a glimpse of that man. I hope my daughter remembers good days, and doesn't become afraid of her father. What I hope for anymore is so far off from what other people do. People say I'm irritable or I'm just not myself. That is correct. I am not myself. My heart is ripped to shreds and I do the best I can every day for my little family. There is no want for pity or attention. As much as I know people mean it when they say they are praying or they offer their help, I wish it didn't have to be that way. I have unfortunately realized I can't do this without help anymore. That isn't our family. We are a military family, self sufficient and tough. We made it through two Alaska winters, have moved 10 times, and been through countless situations. I do chest compression like a boss and can still hold someone's hand after they have puked all over me. I stay calm as someone is screaming in my face because of the horror they had just witnessed and still treat a patient after they have swung their fist at my face. This, this cancer, is something so awful, so new, so uncontrollable, I feel as though I am failing because I can't beat it for him. He can't shoot it with a gun or drop a bomb on it. He can and DOES fight. And there are days I have to remind him why he fights. I never had to remind him why he fought for America.
That's all I can do is believe in him, hope for tomorrow, and take care of my family. Nothing else is up to me.
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