The words hit me like a brick: "Stage IV Metastatic Melanoma." Everything else was just mumbling to me. My brain processed the important phrases like: "Maybe 6-9 months".... "Spread to your brain, lungs, lymph nodes"..."Go home and be with your family". Then I realized I was screaming. Tears were streaming down my face and I was a heap on the floor. My strong soldier sat very still on the exam table, a stoic expression on his ever so handsome face. He had just returned from war with a Bronze Star and an Army Combat Action Badge. He had survived his second deployment and had earned a position with a new Division at Ft. Lewis, Washington. He had seven more years before we could retire. We had a beautiful three year old daughter. Now I'm hearing our world crash around us. I'm in a nightmare, I must be having the worst dream ever. But I never woke up from it.
Eventually I had to be sedated, which looking back is so stupid. My husband was just told he had months to live after a misdiagnosed cancer had spread through his body while he was off fighting for our county, and yet he drove us the 18 miles from Basset Army Community Hospital on Ft. Wainwright to our gorgeous log home in North Pole, AK.
The homecoming sign was still in the yard. The decorations still hung around the house. His rucksack was still in the entry way waiting to be unpacked. We had five days before we had to fly out to Pennsylvania where he would start his treatment. We picked a civilian hospital in Hershey, Pennsylvania because that's where my family was. I was told not to expect the treatments to give us much time, so we should go to a place where I had help.
On the way to the first meeting with the oncologist I asked Chad, "What do you want to do? Just so I know, whatever you want I will support." He said, "I want to fight." So I promised him that until he told me "no more", I would do everything in my power to help him fight. And so it began.
The treatments were awful. The first one that was chosen was an inpatient treatment that seemed more like something you would use to torture the devil himself, because certainly no one would use this on any human being. Watching the love of my life scream and writhe in pain was the absolute worst thing I had ever experienced. I couldn't do anything but hold him, clean him up after getting sick, and get him whatever he wanted. I would wait until he was sleeping to step outside the door and cry. I was in full on sob mode, angry, bitter and downright hateful toward the people who let this happen. How could this happen? There was nothing to undo what was done, so I chose to fight for him when he couldn't fight for himself.
Treatments continued in and out of the hospital. Cyber knife on brain lesions, chemo, pills, scans...eventually we decided to spend time traveling and enjoying his "good days". We had switched to Johns Hopkins and with the blessing of his doctor, who told us that his tumors were stable with the current treatment, we set off for vacation.
The last day in Oahu, Hawaii we ended up in the emergency room of Tripler Army Hospital. They were working tirelessly to communicate with Hopkins. They were sending scans, receiving scans, comparing, asking for advice as to how to proceed. The tumor in his abdomen had grown from 3 cm to 16cm. He wasn't awake. He couldn't be in a seated position or else he would be in excruciating pain. We sent his parents and our daughter home on the regularly scheduled flight and were assured that we would be medi-vaced out to the mainland and have transportation from the airport to Hopkins. A day later I received word that the doctor at Hopkins would not admit Chad upon our return and so the plan was off. He wasn't on orders to Hawaii so the Army would not pay for us to return home. I called the doctor at Hopkins. He told me that he saw the scans. He didn't expect Chad to survive the trip home. We should stay where we were and let him die in peace. At that moment I had a choice to make. I could continue listening to doctors and give up, or I could have faith and courage for both of us, and make things happen.
When we made the switch to Walter Reed, I was in full on mama grizzly mode. I had had enough of being told to give up, that time was up. I promised, and he still wanted to fight. The evening I took him to the Emergency Room at the new Walter Reed National Military Medical Center, I was terrified. In my 13 years as an Emergency Medical Technician I had seen many people ill, many people die. I was driving fast through the city, daring police to pull me over just so they could get us there faster. By the time they got him into a bed, he was unconscious. I was braced for people to tell me he was out of time. I was waiting to claw the eyes out of the next person to refer to my husband in the past tense. I demanded the doctor whose name I had been given by my doctor at Walter Reed.
I had my war face on. I was so tired, but I would never show it. He couldn't speak, so I would speak for him. I would not take no for an answer. I told them what meds needed administered since we didn't bring them with us. I had the list and dosages memorized. From that night on, my role as a caregiver changed. I was no longer alone. I was not begging and pleading and making phone calls. The first person to enter my husband's ER room addressed him as "sir", not Chad. They talked to us both, not just me. Even though he was unconscious, they acknowledged him as their brother in arms. I was assured that they were now a part of our team. They were our new family. We were moved to the oncology wing of the hospital. This place became our new safe haven. I was protective. I soon demanded only military nurses, and I got it. I told them not to bother him in the middle of the night for vitals unless absolutely necessary, it happened. They let me help with medications and dressing changes. They knew certain people were not allowed in his room, and they respected that.
I was never left alone if I didn't want to be. If I needed a break, there was always someone willing to come sit with Chad. I learned the halls of the hospital so well I could have been a tour guide. Between the two of us, we had doctors in almost every department. I learned the language of an oncologist, a surgeon, neurologist, physical therapist, social worker, and pain management specialist. I knew so many different drugs and what they were used for, which ones worked and which ones didn't, I felt like I should be going back to school so I didn't feel so under qualified. After all, who was I to take on all of this?
The worst thing I think people said to me during my time as a caregiver was "Wow, I don't know how you do it, I don't think I could". I'm not sure what people expect you to say to that. You don't think you could? What would you do if faced with the challenge of watching someone you love suffer and struggle? No matter what your background, your human nature would kick in and you would fight right along side them. At least I hope so. No one asks for this. No one wants this. No one is thrilled with the idea of a life changing tragedy. As a caregiver, you can't say "This sucks!" or "I am so tired, I don't want to do this anymore". You keep pushing, you keep a smile on your face in front of your warrior and remind them what they are fighting for. You allow yourself breakdowns when out of sight. If shower walls could talk they would tell you how I pounded my fists, screamed and wailed, tears streaming down my face at a rate to match the water flowing over me. When I emerged, it was all out, I was back in control and I would keep going because he needed me to. Our daughter needed me to.
Chad fought for 6 months past the time his doctor at Hopkins gave him. With the help of the absolutely amazing people at Walter Reed, he not only got more treatment from people who refused to give up, but he was made as comfortable as possible while being respected. Eventually he chose to come home and pass away surrounded by the people and things he loved. He loved being surrounded by fellow warriors, but ultimately he wanted them to remember him fighting, not dying.
Even months after my strong warrior has passed on, I still find it hard to imagine taking care of anyone else. My desire to be an EMT is almost non existent. Not because I don't care about people any more, but because I don't think I could ever hold a dying person's hand again. By the end of my husband's battle, I was worn down, emotionally and physically. I hated myself for letting it show. I had experienced burnout at work, but running on E at home was totally different. The guilt I felt was unbearable. I knew he would be gone soon and I hated seeing him suffer. The night before he died, I was sobbing with my head on his lap. He started gently stroking my hair and whispered "It's ok. It's ok. It's ok." over and over and over. That only made me cry harder.
Early the next morning I sat with his parents and held his hand for 4 hours as he let go of life on this earth. He sat in his favorite chair with his slippers on his feet and his chocolate labrador by his side. I told him is was ok. We would be ok. He didn't need to suffer anymore. I assured him that he would always be loved and remembered.
As worn out as I was, as frustrating as it got, as hard as it was....I would give anything for a few more days. A few more hours to see his beautiful eyes and his devilish grin. I was honored to take care of the love of my life, my hero, until his last breath. He taught me so much about living and dying with dignity and strength. He made me thankful for every day and I continue to remind others that there are always good things to be found even among the worst situations.
Some people choose to be caregivers in the way of doctors, nurses, paramedics and such. Others get thrown into it with a jolt to their daily life akin to the take off of a high speed roller coaster. Either way, we're there. We give with all of our hearts and hope for the best. Caring for a military warrior is among the highest of honors I could ever imagine. My husband fought for us, he loved our country, he believed in it. And when I was given the chance I embraced the challenge knowing what he was going through was something I could not fathom. So I fought for, I loved, and I believed in him.
On the way to the first meeting with the oncologist I asked Chad, "What do you want to do? Just so I know, whatever you want I will support." He said, "I want to fight." So I promised him that until he told me "no more", I would do everything in my power to help him fight. And so it began.
The treatments were awful. The first one that was chosen was an inpatient treatment that seemed more like something you would use to torture the devil himself, because certainly no one would use this on any human being. Watching the love of my life scream and writhe in pain was the absolute worst thing I had ever experienced. I couldn't do anything but hold him, clean him up after getting sick, and get him whatever he wanted. I would wait until he was sleeping to step outside the door and cry. I was in full on sob mode, angry, bitter and downright hateful toward the people who let this happen. How could this happen? There was nothing to undo what was done, so I chose to fight for him when he couldn't fight for himself.
Treatments continued in and out of the hospital. Cyber knife on brain lesions, chemo, pills, scans...eventually we decided to spend time traveling and enjoying his "good days". We had switched to Johns Hopkins and with the blessing of his doctor, who told us that his tumors were stable with the current treatment, we set off for vacation.
The last day in Oahu, Hawaii we ended up in the emergency room of Tripler Army Hospital. They were working tirelessly to communicate with Hopkins. They were sending scans, receiving scans, comparing, asking for advice as to how to proceed. The tumor in his abdomen had grown from 3 cm to 16cm. He wasn't awake. He couldn't be in a seated position or else he would be in excruciating pain. We sent his parents and our daughter home on the regularly scheduled flight and were assured that we would be medi-vaced out to the mainland and have transportation from the airport to Hopkins. A day later I received word that the doctor at Hopkins would not admit Chad upon our return and so the plan was off. He wasn't on orders to Hawaii so the Army would not pay for us to return home. I called the doctor at Hopkins. He told me that he saw the scans. He didn't expect Chad to survive the trip home. We should stay where we were and let him die in peace. At that moment I had a choice to make. I could continue listening to doctors and give up, or I could have faith and courage for both of us, and make things happen.
I stormed down the hallway after telling the doctor he gave up on the wrong man. I walked right up to the nurse's station and demanded to talk to the hospital commander or I would show them the full wrath of my crazy. The louder my voice got, the quicker they moved. An hour later we had the commander of the oncology department and the lead oncologist in our room, two first class tickets for a flight leaving that night in hand.
We made it to Salt Lake City airport and as I wheeled him to the next gate he said "Stop". I sat beside his wheelchair on a bench and he looked me in the eye. "I can't make it. He was right, I'm not going to make it." Again, I had a choice to make. I could let him wallow in self pity and sit in an airport watching him give up, or I could do the only thing I knew a soldier to respond to: give him a challenge. My response was "You ARE going to make it, because guess what? You don't have a choice! You will get on the next plane, you will fly with me back to Maryland and you WILL continue fighting. I know you're tired and you hurt and you want to die, but you're NOT going to do that to me here. Got it?" He shook his head yes and we flew without incident to BWI.
The hospice team was sent the next day. The forms were filled out and we resigned to the idea that the fight was over. We were home, he was comfortable and that was it. Then something amazing happened. Chad got up. He ate breakfast. He rested and then ate again. He got more strength. With every visitor coming to say "Goodbye", he got stronger. He was accepting the challenge. Many in the cancer world call it "rallying". Whatever you call it, it's amazing. Within two weeks, we were walking hand in hand to prove his doctor wrong face to face. When he walked in the door and his jaw dropped, I laughed and tore into a world renowned doctor for being so despicable as to dismiss someone simply because he would make his numbers look bad. How dare he, and he would never see us again.
When we made the switch to Walter Reed, I was in full on mama grizzly mode. I had had enough of being told to give up, that time was up. I promised, and he still wanted to fight. The evening I took him to the Emergency Room at the new Walter Reed National Military Medical Center, I was terrified. In my 13 years as an Emergency Medical Technician I had seen many people ill, many people die. I was driving fast through the city, daring police to pull me over just so they could get us there faster. By the time they got him into a bed, he was unconscious. I was braced for people to tell me he was out of time. I was waiting to claw the eyes out of the next person to refer to my husband in the past tense. I demanded the doctor whose name I had been given by my doctor at Walter Reed.
I had my war face on. I was so tired, but I would never show it. He couldn't speak, so I would speak for him. I would not take no for an answer. I told them what meds needed administered since we didn't bring them with us. I had the list and dosages memorized. From that night on, my role as a caregiver changed. I was no longer alone. I was not begging and pleading and making phone calls. The first person to enter my husband's ER room addressed him as "sir", not Chad. They talked to us both, not just me. Even though he was unconscious, they acknowledged him as their brother in arms. I was assured that they were now a part of our team. They were our new family. We were moved to the oncology wing of the hospital. This place became our new safe haven. I was protective. I soon demanded only military nurses, and I got it. I told them not to bother him in the middle of the night for vitals unless absolutely necessary, it happened. They let me help with medications and dressing changes. They knew certain people were not allowed in his room, and they respected that.
I was never left alone if I didn't want to be. If I needed a break, there was always someone willing to come sit with Chad. I learned the halls of the hospital so well I could have been a tour guide. Between the two of us, we had doctors in almost every department. I learned the language of an oncologist, a surgeon, neurologist, physical therapist, social worker, and pain management specialist. I knew so many different drugs and what they were used for, which ones worked and which ones didn't, I felt like I should be going back to school so I didn't feel so under qualified. After all, who was I to take on all of this?
The worst thing I think people said to me during my time as a caregiver was "Wow, I don't know how you do it, I don't think I could". I'm not sure what people expect you to say to that. You don't think you could? What would you do if faced with the challenge of watching someone you love suffer and struggle? No matter what your background, your human nature would kick in and you would fight right along side them. At least I hope so. No one asks for this. No one wants this. No one is thrilled with the idea of a life changing tragedy. As a caregiver, you can't say "This sucks!" or "I am so tired, I don't want to do this anymore". You keep pushing, you keep a smile on your face in front of your warrior and remind them what they are fighting for. You allow yourself breakdowns when out of sight. If shower walls could talk they would tell you how I pounded my fists, screamed and wailed, tears streaming down my face at a rate to match the water flowing over me. When I emerged, it was all out, I was back in control and I would keep going because he needed me to. Our daughter needed me to.
Chad fought for 6 months past the time his doctor at Hopkins gave him. With the help of the absolutely amazing people at Walter Reed, he not only got more treatment from people who refused to give up, but he was made as comfortable as possible while being respected. Eventually he chose to come home and pass away surrounded by the people and things he loved. He loved being surrounded by fellow warriors, but ultimately he wanted them to remember him fighting, not dying.
Even months after my strong warrior has passed on, I still find it hard to imagine taking care of anyone else. My desire to be an EMT is almost non existent. Not because I don't care about people any more, but because I don't think I could ever hold a dying person's hand again. By the end of my husband's battle, I was worn down, emotionally and physically. I hated myself for letting it show. I had experienced burnout at work, but running on E at home was totally different. The guilt I felt was unbearable. I knew he would be gone soon and I hated seeing him suffer. The night before he died, I was sobbing with my head on his lap. He started gently stroking my hair and whispered "It's ok. It's ok. It's ok." over and over and over. That only made me cry harder.
Early the next morning I sat with his parents and held his hand for 4 hours as he let go of life on this earth. He sat in his favorite chair with his slippers on his feet and his chocolate labrador by his side. I told him is was ok. We would be ok. He didn't need to suffer anymore. I assured him that he would always be loved and remembered.
As worn out as I was, as frustrating as it got, as hard as it was....I would give anything for a few more days. A few more hours to see his beautiful eyes and his devilish grin. I was honored to take care of the love of my life, my hero, until his last breath. He taught me so much about living and dying with dignity and strength. He made me thankful for every day and I continue to remind others that there are always good things to be found even among the worst situations.
Some people choose to be caregivers in the way of doctors, nurses, paramedics and such. Others get thrown into it with a jolt to their daily life akin to the take off of a high speed roller coaster. Either way, we're there. We give with all of our hearts and hope for the best. Caring for a military warrior is among the highest of honors I could ever imagine. My husband fought for us, he loved our country, he believed in it. And when I was given the chance I embraced the challenge knowing what he was going through was something I could not fathom. So I fought for, I loved, and I believed in him.
No comments:
Post a Comment