After the last blog I wrote, telling everyone of the Major's terminal prognosis, I admit I have stayed away from this blog. The funny thing about someone who loves to write is that you always seem to be doing it in your head anyway. I just didn't feel like letting the words come out. Some of you may know that things have taken a turn for the worse. Facebook posts only let you know so much, though. And unfortunately some people seem to be misinformed and I can only blame myself for that. So we'll start from hubby's last appointment with his oncologist....
The Major had been doing well, the weight was coming off from the steroids that he had been on to take the swelling off his brain that was caused by the brain lesions. The brain lesions had responded in a good way to the cyber knife. The lesions in his body seemed to be stable and we were under the impression the Temadur was doing something. The oncologist was pleased and we were given permission to go to Hawaii. A PET scan was scheduled for the day after we arrived home.
Our Christmas present to hubby's parents was taking them along to Oahu. We had lots of things planned, taking the Tink back to Disney Aulani, spending some time in Waikiki, and ending our stay at Turtle Bay. I was so happy to have the Major healthy enough for such a big trip. Things were looking good and we were even planning more trips for when we got home. Disney World, Alabama, Texas, and the Carolinas. We were confident that the trials we found would begin soon after we returned from Hawaii.
Things started out well once we landed in Honolulu. It was as it had been the year before when we were there. People are so sweet and wonderful. The atmosphere is laid back and comfortable. We all took a proverbial sigh of relief being away from doctors and other stressors. In the mornings came fresh fruit, fish and juice. The afternoons were play time and the evenings were exploring and unwinding. The weather was a bit more chilly than it had been the previous year, but it was still better than what we had left on the East coast.
We enjoyed kayaking, playing on the beach, in the ocean, in the pools, going down water slides, whale watching and driving around the island. We were meeting wonderful people and having great experiences. Life was finally good.
We spent 6 days at Disney Aulani. After that we went to Turtle Bay. We chose to stay in the ocean side villas as we did last year. It's something pretty amazing to have world famous waves crashing right outside your door. Having the sound of the surf lull you to sleep at night. Wake up in the morning to go looking for the turtles that come ashore. Heaven. To me, anyway.
I had wrestled with the idea of getting another tattoo in Hawaii. I knew what I wanted, but I wanted some polynesian flare to it, so we made the decision to go for it. Most of you have seen the photo. It is a butterfly above my ankle and the body is a melanoma awareness ribbon. The rest is a polynesian tribal wrapping around my ankle down to the foot and ending with plumeria flowers. The Major sat with me and held my leg because I could not control the nerves in my foot from twitching. It was the most painful tattoo I can imagine, much more so than my first one.
We had plans for sunset horseback riding the next night. This is what I had been waiting for. I love riding. I love horses. I love the beach. I love Pacific sunsets....so again, perfect. The night we got home from getting my tattoo, the Major let me know he was in pain. He had been lifting our daughter that day, playing in the ocean with her and pushing himself. I thought maybe he had pulled a muscle or aggravated a hernia that has still not been repaired after 2 years.
When we went to bed and I could see the pain on his face, I examined his abdomen and found distention and a hard mass. It was in the area of his gall bladder. I wanted to take him to the ER, but he insisted he just wanted to go to sleep and wait until the morning.
The next morning when the Major woke, he couldn't move without the most intense pain. The distention had gotten worse, and I couldn't even palpate his belly without him wanting to scream. I knew I was not going to get him in a car. I called 911. Thankfully the hubby's mom was able to watch little tink and his dad drove the rental car to the hospital.
We were taken to a small, community hospital ER. The people were so kind. The Major's nurse was the sweetest nurse I had ever met. She had a part time job at a local Starbucks and made me coffee and tea the whole time we were there. She gave the Major a hard time (we like that) and treated him like a king. His every need was taken care of and so were ours. Hubby had a CT scan done, and the results showed a mass in his abdomen. This was no surprise since that mass had been there for a while. The doctors wanted him admitted. At that point I chose to have him transferred to Tripler Army Hospital in Honolulu. It is a large facility equipped with up to date machines and lots of staff. Not to mention a built in support system for our whole family.
The Major was transferred from ER to ER, highly medicated and slightly snowed. He was still in pain, but was able to rest and sort of be oblivious to everything. We waited for consults in Tripler's ER. I can't tell you how long, I just know that our total ER time for the day was 12 hours. I was filling in the nurses, doctors and surgeons since we had no records along and they were only getting what was in the Army system, which wasn't much. They had no scans to compare to. I put them in touch with the hubby's oncologist back at Hopkins.
In the meantime, vascular surgery came to visit. He stated that the tumor was pressing against the hubby's inferior vena cava and was squishing the greenfield filter that had been put in place in December when he had DVT and a pulmonary embolism. He said that wasn't a problem because the tumor was acting the same way the filter had been working and that it seemed the hubby's body had adjusted and found other ways to get blood flow around his body, bypassing the IVC.
Next was general surgery. They reviewed the scan and stated that the tumor was now at 16cm. Talking with the oncologist back east, it had doubled in size. Now the tumor was either in or right around his liver and the surgery to remove or resect it would kill the Major. If not on the table, the 6 month recovery time would do him in.
I was feeling frustrated. At that point all I was getting were "can'ts" Stop telling me what you can't do and tell me what can be done, is what I said to the ER doctor. She told me they were working on getting him admitted. I asked what they planned on doing since surgery wasn't an option. Then came the face. Only certain people know this face. Either you work in the medical field or you have gotten this face as a family member of a patient. I have had the unpleasant experience of having it both ways. I could feel the tears started to build up, the lump in my throat rose. I asked "How long?" She responded "Could be weeks". I tried to hold back the sobs. I thanked her for being honest.
The Major was admitted to the oncology floor and settled in by 9PM. His father and I had to return to Turtle Bay to pack and check out the next morning and get everyone moving. Our flight was to leave that evening around 9. I was anticipating a long, horrible day of canceling my flight and the Major's flight, getting the in-laws and little Tink to their flight, returning the rental car, and being stranded at a hospital until the Major was fit to fly.
Upon arrival to the oncology floor, I was met by hubby's nurse for the day. A very kind and sweet LT. She had already talked to the social worker and nurse case manager and everyone was working on getting the Major back to the mainland as soon and as comfortably as possible so he could be at Hopkins. His pain was being managed with high doses of IV meds as well as oral meds. He was in and out and barely able to stand. He was unable to sit upright, but instead had to be in a reclined position. His pulse ox kept falling into the low 90's, high 80's and so he was on constant oxygen. Since the rooms in the hospital were 2 bed rooms, the nurses came together and got the Major in a very large, pink reclining sleeper chair and wheeled him to the private family room so we could all relax and visit and watch tv together. Things were turning out better than I had hoped.
The admitting doctor came to chat with us, and told me to go ahead and cancel the flights for the two of us that night, that they were working on a medevac out for us. I did as I was told. Happy that we had purchased the travel insurance, and that they were already working on a letter to give to the airline company so we would get a refund. The airline reimbursed our card and the flight was on time for the in-laws to go back with Little Tink. They would return the rental car and I would stay that night with the Major in his room on the sleeper chair and spend the next night in the Fisher House so I could shower and get some sleep in a regular bed before our trip home.
The social worker came and stated they thought a commercial flight home in first class would be better than an air evac flight as there would be less stops and more comfort. They were arranging that for Saturday. All seemed to be well and I was relaxing. We were enjoying the hours with our family, as much as you can in a hospital, and making friends with the soldiers.
By the time the hubby's parents were leaving, we were all worn out. I hated that my little girl was leaving without me. She has flown so many times I have lost count, but this would be the first time she ever flew without me. I promised her we would be home soon and that I would take care of Daddy. And then they were off.
The Major and I were moved into a private, ocean view room and were again referred to as the place to be when it came to the nurses and aides. Who needs grumpiness in a hospital?? We don't believe anyone does and try to have a good time. The night went well. The next morning I woke up and found some decent coffee. People were coming by to offer different kinds of support and checking on the hubby. By mid morning we were both napping.
I remember waking to the door slowly opening. I saw the nurse case manager's face. Behind her was someone in the Navy (he was higher ranking, but I don't know Navy rank). I told them to come in, hoping it was about our flight itinerary. This is roughly how the conversation went:
"Mrs. W. I have talked to TriCare and the are saying they will not pay for your flights home as you are on vacation"
I blinked. Thinking I was still asleep... "What did you say?"
"TriCare will not be paying for your flights or arranging a medevac, so you will have to find your own way home"
Now shooting straight up to a sitting position in the chair... "What do you mean? You told me to cancel my flights for last night and he can't fly in a regular flight. Plus he is supposed to be a direct admit to Hopkins. You were going to have an ambulance pick him up and take him from the airport."
"I know, ma'am but you will have to find your own way home now"
"WAIT! ARE YOU SERIOUS?" ----Navy guy trys to interrupt "NOT ONE WORD FROM YOU!"
Turn to the nurse "YOU TOLD ME THIS WAS TAKEN CARE OF!! HOW DARE YOU COME IN HERE AND TELL ME THIS IS MY PROBLEM AND LEAVE ME TO DEAL WITH IT ALL ALONE! WE WOULD HAVE BEEN ON THAT FLIGHT LAST NIGHT IF IT HADN'T BEEN FOR YOU AND NOW YOU'RE TELLING ME, TOO BAD??? NO! NOT ACCEPTABLE!!! YOU GO GET THE COMMANDER RIGHT NOW"
"But ma'am"
"NO, NO BUTS. YOU GO GET THE COMMANDER, OR I WILL MARCH RIGHT INTO THE ONE STAR'S OFFICE AND GET YOU FIRED MYSELF. THIS IS NOT HOW IT'S GOING TO BE. YOU HAD ME CANCEL OUR TICKETS AND NOW YOU WANT ME TO BUY SAME DAY TICKETS??? DO YOU KNOW HOW MUCH THAT IS GOING TO COST????? THIS IS YOUR PROBLEM AND YOU ARE GOING TO FIX IT"
They turned and left and I was fuming. I have never felt so irate. I walked out of the room because the Major had fallen back asleep. I went up to the nurse's station and made sure his nurse knew what was going on. I again demanded the commander. They were getting him.
I called hubby's nurse case manager for his unit and being the wonderful human being that he is, assured me he would get help, and I had every confidence he would.
I then called hubby's oncologist at Hopkins because I wondered how in the world a hospital to hospital transfer could be put on me? This is how that conversation went:
"Hi Dr. S. The Army is now telling me since we are on vacation that they will not fly us home, and the Major is in such pain I have no idea what I am going to do to get him there. My impression was it was a hospital to hospital transfer and you would be admitting him when we landed."
"I didn't say he needed to be admitted, I said I would. Do you think it's best to fly him home?"
"Well, he's in a lot of pain, but if I can get him first class, he can lie back and it would be better. I want to get him back there so you can see him."
"I have spoken to the doctors there and reviewed the records and reports and I don't know if it's best for your husband to fly. Could you stay in Hawaii?"
"What do you mean stay in Hawaii? Until he's feeling up to it?"
"..........."
"No, you mean until he dies. YOU MEAN I AM SUPPOSED TO STAY HERE BECAUSE IT ISN'T GOING TO BE LONG ENOUGH FOR ME TO EVEN GET HIM HOME????"
"I don't believe it will be long, and am afraid of what may happen in the air"
"I HAVE NO ONE HERE. WE HAVE NO ONE. HIS PARENTS LEFT, OUR DAUGHTER LEFT"
"It won't be long. Can you get your daughter back there?"
"Yes. I will do what I have to do. Thank you for being honest"
I hung up as the nurse case manager as well as some higher ups were walking toward me. I fell to the floor in uncontrollable sobs. They looked at me and turned and walked away. I believe that is the most desperate and lonely time of my life. They walked away as I had just received news that my husband would be dying in a hospital 5,000 miles away from anyone we knew. I was alone. Totally alone. And then, God put the person I needed where I needed him to be. A psychiatrist that had met with us the day before came rushing up to me. He said "I was finishing with a patient and I felt this urge to come see you guys".
I filled him in on the situation in between sobs. He and the hubby's nurse calmed me down. We started to rationalize options so we could present them to the Major. We then went into the room to tell him everything. The cool, calm, collected Officer that he is, he looked me right in the eye and said "I want to go home". You see, I had made him a promise a long time ago, I promised that he would NOT die in a hospital. No matter what, that wasn't going to happen. And he knew that I would fight to get him what he needed. I said "Ok" and wiped the tears from my eyes and started on a mission.
We met with a full colonel, a lt. colonel and a major as well as a few doctors. A few minutes later we were handed a fully paid flight itinerary for the night. We would have to pay for the upgrade to first class, but I didn't care.
That night, the Army provided a van and a driver, helped us with our bags, wheeled the Major outside and as we loaded things into the van, he looked at me and said "I don't think I'm going to make it home". Swallowing every ounce of fear and sadness I said "YES YOU ARE". We got to the airport, upgraded and were the first ones on the plane. I must say as horrible as the situation was, we quite enjoyed first class.
The Major dozed most of the way. I cried a lot because his skin was gray and his lips were blue. He was cold and his breathing was shallow. I felt sure I would lose him before we landed in Baltimore. I kept praying to just get him home. Just get him there and let him be surrounded by family.
We made it home. My dad picked us up at the airport and the Major had enough energy to request a steak at Texas Roadhouse. I was so happy to see him eat for the first time in 4 days. The Major's mom brought Little Tink that night, and his sister brought our little puppy man home the next day. We received a visitor that Saturday. A wonderful friend from Alaska. She and her husband had PCSed to Germany and she was visiting the East coast for a while. I had warned her that the Major wasn't good. I was afraid that morning that things were going down hill fast. The signs were there, and having seen it multiple times I just wanted as many people with us as possible.
Then something amazing happened. Our friend arrived and the Major perked up a little. He forces himself to ignore pain and put on a good face for people. As the day went on, he was able to get up and move around. He rode with his sister to pick up some pizza. Then that evening his best friend came the whole way from PA to visit. The Major kept looking better. He was eating and drinking, going up and down stairs. Still in pain, but the fight had come back.
The next day Hospice came to admit him into their care. All of our fears and misconceptions about Hospice were squashed. The organization is wonderful. We have a loving, caring nurse who has a sense of humor that matches ours. They switched the hubby onto non narcotic pain meds so he can be awake and active. They got us oxygen for when he needs it. They provided us with a kit so I don't have to freak out and make trips to the ER for minor things. They have equipped us with knowledge and 24/7 help. They have people for round the clock support. We are able to relax. And they are not here to condemn him to death. They don't even talk about it. They don't pity him. They encourage him to get better and stay active. The cheer him on. It isn't a depressing thing. They aren't taking his dignity or choices away. He is in control. He is able to travel and do what he pleases. I can't tell you what a weight off it is.
As far as his oncologist giving up on him, I've said my piece to him. I've made him feel absolutely awful and was so happy to see the surprised look on his face when he saw the hubby doing so well. I told him he made a mistake giving up on my husband. He is a fighter. We both are. We won't give up. Hospice doesn't mean we are giving up. It means we are leaning on people. For the first time in our lives we are accepting help in hopes that whatever happens is a peaceful, stress free experience.
Thank you all for your love and support. I will try to do better updating on the Major's condition and our day to day experiences.
As of now, the abdominal mass is 16 cm. The masses in his lungs have grown considerably and have multiplied. There is a mass above his bladder that has grown. Those are the things they are most concerned about now. Pain is being managed but he is fighting. He is up and moving. He isn't depressed or angry. We are enjoying time. We covet your prayers and have thankful hearts for every second of every day, and for our friends and family.
Wednesday, March 6, 2013
Wednesday, December 5, 2012
How do I even write this?
Yesterday, I posted on Facebook that I was able to pick up the Major from the hospital after a 3 day stay from the mild seizure he had on Saturday night.
Hubby had started having these mild seizures about a month and a half ago in the form of aphasia (not able to speak correctly). The Major has 4 brain lesions caused by the melanoma. He started this process in May with 1. The first lesion was treated at Hershey Medical Center with Gamma Knife. They were quite positive it worked and there should be no other issue with it. They were even talking to the Major about using him as a spokesmodel for the Gamma Knife tool at Hershey. After a few months and starting the new chemo, the hubby started to get headaches that caused hospitalizations. The headaches were caused by swelling in the brain, the old lesion was reacting to the treatment and the new lesions were growing. There was midline shift in his brain and so started the steroids. He had two more trips to the ER after that, one resulted in another admission, the other was the first bout of aphasia that landed him a flight in the local med helicopter. That visit revealed there was no new bleeding in his brain, and no major swelling, so they had no idea what had happened. Thank God for Johns Hopkins.
The Major saw his neurosurgeon and radiation oncologist shortly after and it had been determined that the aphasia was caused by small seizures being set off by the smaller lesions in his brain. One was pushing on his optical nerve which was causing some problems with vision in one of his eyes. Cyber knife was scheduled for the two smaller lesions. The Major had 5 days in a row of treatment and was actually feeling pretty good.
The next day, Saturday, we decided to do a little shopping and picked out a cake for our daughter's birthday. We enjoyed a few treats at the wonderful bakery where we will order all future cakes :) and then came home. We were both wiped out, so we decided to nap. I woke up in time to make dinner and the hubs woke up as soon as I rolled out of bed. He asked me a weird question, and I thought he was still dreaming. Sometimes he has trouble waking up and differentiating between dreams and reality for a few minutes. As I was letting the dog out, I heard what I had the month before. Only this time instead of making up words starting with M's, he was making up words with T's. He had no idea he wasn't making sense. He couldn't comprehend that I was telling him it was happening again. This time I didn't panic because we had gone through it before. I knew what it was. I calmly called the radiation oncologist on call for Hopkins and he told me to take him to the nearest ER. In PA I would have just taken him to Hershey. Even though we lived in this area before, it was more toward the other end of the county so I knew where the hospitals were there...not here. I called the local dispatch center to find the closest one and they instructed me on how to get there. What a HUGE mistake. I work in a city. I mean, no it's not right outside DC, but I NEVER expected to see an ER like this. AWFUL! GHETTO! SCARY!!! The security guards equaled the number of nurses. Every patch that came in over the radio was for a shooting, stabbing, domestic or MVA with alcohol involved. I was speechless. And then the hubby and I just started laughing. We spent 6 hours in the horrid ER room, but the nurse and doctor the hubby had were wonderful. At first they treated us like there wasn't really anything wrong with the hubs. Then they read the CT scan. I saw it on the doctor's face when she came in the room. She told us that the scan showed bleeding in and around one of the lesions and the hubs was being transferred to Hopkins via Inter-Facility Transport. This made me relax and feel a lot better knowing he was going to get the care from his doctors that he needed.
Since transport didn't arrive until almost midnight, the hubby told me to go home to take care of the dog and get some sleep. I knew not to argue because I was too tired to drive the hour to Hopkins and have to come home for the dog in the morning, and turn right around to go back to Hopkins. I knew he would be taken care of and nurses always love him. He has such a great sense of humor he usually ends up making them laugh, instead of them cheering him up.
The next day he was moved out of neuro ICU into the brain rescue unit. Tests were getting underway...MRI, EEG, PET scan, neuro exam every few hours. The hubby was put on anti seizure medication as well as them increasing the steroids they had been tapering down. He looked and sounded much better though and I was glad he would be going home.
We left the hospital right for his appointment with his main oncologist. The one that had started the new form of chemo with the hubby and was following his overall care. The man is usually all business, in his fancy suit and very reserved attitude. He always had a smile for us though. Not that day. I watch people. I study their faces. I can tell things from their eyes, their hand motions, the hesitation in the way they speak. Even seasoned professionals sometimes can't hide their discomfort. Hubby picked up on it too as the doctor did his exam. It was a short exam and the doctor kept running in and out, apologizing for it, but saying he was trying to get a good comparison on the Major's previous scan from Hershey and the one they had just done at Hopkins. These PET scans are used for staging purposes. To see initially where all of the cancer is and what stage of the disease you're in. Hubby started in stage 4. After that, they use the scans to see how treatments are working, if the cancer has progressed or moved, changed or gotten better...or even disappeared.
We were taken into the doctor's office which is where we had our first meeting with him. I remember that he loved Savannah and had given her snacks and liked talking with her. She wasn't with us on this day, thankfully she was with her grandparents.
The doctor started with questions for hubs. They were chit chatting and the doctor knew I wanted to say something. He told me to go ahead. I told him to please just get to what he knew we were waiting for. Please stop and just tell us. His eyes shifted down and a man who usually seemed to be able to smooth talk anything was at an almost loss for words. Finally he came out with, the scan shows new cancer, some old cancer is gone, and some is still there and bigger. Bottom line is the treatment didn't work the way I had planned on. There is still too much melanoma. He said there was another treatment he wanted to try, a pill form that hubs could take at home and just follow up every couple of weeks. I stopped him again. I finally got the courage to ask him what had been swirling through my brain, torturing me every day and night. "Are you trying to save his life or give him more time??" Again, the hands folded and he looked down at his table. He looked back up and said "At this point it's all about time. Most patients with multiple brain lesions only make it 3-4 months. Your husband has already surpassed that. So to say 3-6 months would be reasonable."
I had to be sure I heard him right. I repeated the time to him and he said yes, but hopefully the pill would give us some more time to come up with another plan. If the hubby's brain lesions weren't under control when the new trial comes out, however, he wouldn't be eligible for it.
I sat, trying to control the quiver in my lip, the tears streaming down my face, the urge to scream. More time, we needed more time. That had to be wrong. He looks so healthy other than gaining the weight from the steroids. That couldn't be right. They kept talking, questions and answers kept coming. The doctor saw me shove an Ativan in my mouth and he got me a glass of water. At that point I was feeling so queasy I had to excuse myself for the ladies room. I fell down in the corner of the public ladies room. I didn't care who saw me. There was nowhere private, there were no friends or family, just a phone call to the one person I trust to be straight with me and whom I know will listen and not judge no matter what I say. Hub's nurse case manager. I was hysterical. I couldn't breathe, I couldn't see, I couldn't talk. That had to be wrong, I needed more time. He needs more time. Our daughter needs more time. With the help of my friend on the phone I pulled it together and went back to the hubs and doctor. We left the building and things started hitting me. I was seeing Christmas decorations angry and devastated that if the doctor was right, I will be alone with our daughter next Christmas. We went throughout our day, I promised the Major lunch at Cheesecake factory and he wanted to get me boots for my dress I bought for his promotion ceremony. We sat down for lunch and it was going ok. Then phone calls started coming. One from his previous commander who is now in Germany. I had asked her to call me. Tears rolled as I told her what was happening. There were tears on her end too, which made me cry more. She was family to us, and we love her just as much as she loves us. I knew she would take it hard. Not just because of our bond with her, but because she had already lost and Airman to cancer.
The next call came from another previous commander who happens to be doing the hub's ceremony. I wanted him to know what was going on so he wasn't blindsided when he got her next week.
The next call was the Major's nurse case manager checking on us. I had told him I can't do this. He called to tell me that WE can do this. The Army, the hubs, our families and friends. He reassured me that I wasn't alone. That gave me the strength to suck it up for the Major the rest of the afternoon.
The tough job of telling parents was done. We just needed a break before we told everyone else. Please don't get me wrong, I in no way am giving up on my husband. I am in no way discounting what God can do. I just have to be a realistic planner for our future and use the timeline given to try to get us settled and enjoy as much time as possible.
I am absolutely terrified. I'm not going to lie. Some people may look at me and say that if I'm scared I have no faith. Say what you will. Especially people who aren't living this. I don't want to live my life without my best friend, the love of my life, the father of my child, the man I thought I would never even get to date, but actually did marry him. I'm extremely sad to know our lifestyle that we chose is coming to an end. No more dining out's, award ceremonies, PCS's, new jobs, new military friends, our retirement home in South Carolina. I don't even want to think what my life is going to become right now. I don't want to think of a life without my husband. But yesterday I was told I have to start thinking about it. I was able to shove it out of my mind and pretend it wasn't happening. That maybe some miracle would happen with this treatment and he would be healed and then eventually cured. Instead I was told my husband would not return to work, the new treatment only has a 20% success rate and that is only in adding time. I won't give up on him. I believe if anyone can be stubborn and fight hard just to prove doctors wrong, he can.
But living with that guesstimate, we are planning fun things. Europe, Disney Paris, the UK and perhaps Disney World. It's bitter sweet. I want our daughter to have those experiences with her father. I want to make memories with both of them that she can look back on forever. Knowing she was born with the best father ever and instead of being bitter and angry, she should be thankful that she comes from such a man. That someone loved her so extremely much. I have to keep the fears to myself. The fear of being a single mom. The fear of not doing a good enough job with our daughter. The fear that I won't be able to provide what the two of us would have. I want her to live every day knowing that she had the best father and that I will do everything in my power to make sure she gets where she wants to go in life. She is my number one priority. I don't ever want her to feel like she isn't.
Now is the time for the Major to write letters, to make memories, to make plenty of videos. We're starting to look at houses to settle into in hopes of having some time with him in the place our daughter and I will live. I want it to always be our house. I want her to remember her father there. Even facing these things head on, I can't believe it. I'm sitting here next to the man I love trying not to break down at the though of sitting on this couch without him in a few months. I hate it. I hate this. People keep telling me how unfair it is, how this shouldn't be happening to us. One woman told me there is no advice for this. There is nothing anyone can say. And she was right. Nothing that is said or done can make this different. I just ask for continued prayers. I want as much time with my soldier as possible. Every day that I wake up and have another day with him, I will be thankful.
Love to all of you dear friends and family.
Hubby had started having these mild seizures about a month and a half ago in the form of aphasia (not able to speak correctly). The Major has 4 brain lesions caused by the melanoma. He started this process in May with 1. The first lesion was treated at Hershey Medical Center with Gamma Knife. They were quite positive it worked and there should be no other issue with it. They were even talking to the Major about using him as a spokesmodel for the Gamma Knife tool at Hershey. After a few months and starting the new chemo, the hubby started to get headaches that caused hospitalizations. The headaches were caused by swelling in the brain, the old lesion was reacting to the treatment and the new lesions were growing. There was midline shift in his brain and so started the steroids. He had two more trips to the ER after that, one resulted in another admission, the other was the first bout of aphasia that landed him a flight in the local med helicopter. That visit revealed there was no new bleeding in his brain, and no major swelling, so they had no idea what had happened. Thank God for Johns Hopkins.
The Major saw his neurosurgeon and radiation oncologist shortly after and it had been determined that the aphasia was caused by small seizures being set off by the smaller lesions in his brain. One was pushing on his optical nerve which was causing some problems with vision in one of his eyes. Cyber knife was scheduled for the two smaller lesions. The Major had 5 days in a row of treatment and was actually feeling pretty good.
The next day, Saturday, we decided to do a little shopping and picked out a cake for our daughter's birthday. We enjoyed a few treats at the wonderful bakery where we will order all future cakes :) and then came home. We were both wiped out, so we decided to nap. I woke up in time to make dinner and the hubs woke up as soon as I rolled out of bed. He asked me a weird question, and I thought he was still dreaming. Sometimes he has trouble waking up and differentiating between dreams and reality for a few minutes. As I was letting the dog out, I heard what I had the month before. Only this time instead of making up words starting with M's, he was making up words with T's. He had no idea he wasn't making sense. He couldn't comprehend that I was telling him it was happening again. This time I didn't panic because we had gone through it before. I knew what it was. I calmly called the radiation oncologist on call for Hopkins and he told me to take him to the nearest ER. In PA I would have just taken him to Hershey. Even though we lived in this area before, it was more toward the other end of the county so I knew where the hospitals were there...not here. I called the local dispatch center to find the closest one and they instructed me on how to get there. What a HUGE mistake. I work in a city. I mean, no it's not right outside DC, but I NEVER expected to see an ER like this. AWFUL! GHETTO! SCARY!!! The security guards equaled the number of nurses. Every patch that came in over the radio was for a shooting, stabbing, domestic or MVA with alcohol involved. I was speechless. And then the hubby and I just started laughing. We spent 6 hours in the horrid ER room, but the nurse and doctor the hubby had were wonderful. At first they treated us like there wasn't really anything wrong with the hubs. Then they read the CT scan. I saw it on the doctor's face when she came in the room. She told us that the scan showed bleeding in and around one of the lesions and the hubs was being transferred to Hopkins via Inter-Facility Transport. This made me relax and feel a lot better knowing he was going to get the care from his doctors that he needed.
Since transport didn't arrive until almost midnight, the hubby told me to go home to take care of the dog and get some sleep. I knew not to argue because I was too tired to drive the hour to Hopkins and have to come home for the dog in the morning, and turn right around to go back to Hopkins. I knew he would be taken care of and nurses always love him. He has such a great sense of humor he usually ends up making them laugh, instead of them cheering him up.
The next day he was moved out of neuro ICU into the brain rescue unit. Tests were getting underway...MRI, EEG, PET scan, neuro exam every few hours. The hubby was put on anti seizure medication as well as them increasing the steroids they had been tapering down. He looked and sounded much better though and I was glad he would be going home.
We left the hospital right for his appointment with his main oncologist. The one that had started the new form of chemo with the hubby and was following his overall care. The man is usually all business, in his fancy suit and very reserved attitude. He always had a smile for us though. Not that day. I watch people. I study their faces. I can tell things from their eyes, their hand motions, the hesitation in the way they speak. Even seasoned professionals sometimes can't hide their discomfort. Hubby picked up on it too as the doctor did his exam. It was a short exam and the doctor kept running in and out, apologizing for it, but saying he was trying to get a good comparison on the Major's previous scan from Hershey and the one they had just done at Hopkins. These PET scans are used for staging purposes. To see initially where all of the cancer is and what stage of the disease you're in. Hubby started in stage 4. After that, they use the scans to see how treatments are working, if the cancer has progressed or moved, changed or gotten better...or even disappeared.
We were taken into the doctor's office which is where we had our first meeting with him. I remember that he loved Savannah and had given her snacks and liked talking with her. She wasn't with us on this day, thankfully she was with her grandparents.
The doctor started with questions for hubs. They were chit chatting and the doctor knew I wanted to say something. He told me to go ahead. I told him to please just get to what he knew we were waiting for. Please stop and just tell us. His eyes shifted down and a man who usually seemed to be able to smooth talk anything was at an almost loss for words. Finally he came out with, the scan shows new cancer, some old cancer is gone, and some is still there and bigger. Bottom line is the treatment didn't work the way I had planned on. There is still too much melanoma. He said there was another treatment he wanted to try, a pill form that hubs could take at home and just follow up every couple of weeks. I stopped him again. I finally got the courage to ask him what had been swirling through my brain, torturing me every day and night. "Are you trying to save his life or give him more time??" Again, the hands folded and he looked down at his table. He looked back up and said "At this point it's all about time. Most patients with multiple brain lesions only make it 3-4 months. Your husband has already surpassed that. So to say 3-6 months would be reasonable."
I had to be sure I heard him right. I repeated the time to him and he said yes, but hopefully the pill would give us some more time to come up with another plan. If the hubby's brain lesions weren't under control when the new trial comes out, however, he wouldn't be eligible for it.
I sat, trying to control the quiver in my lip, the tears streaming down my face, the urge to scream. More time, we needed more time. That had to be wrong. He looks so healthy other than gaining the weight from the steroids. That couldn't be right. They kept talking, questions and answers kept coming. The doctor saw me shove an Ativan in my mouth and he got me a glass of water. At that point I was feeling so queasy I had to excuse myself for the ladies room. I fell down in the corner of the public ladies room. I didn't care who saw me. There was nowhere private, there were no friends or family, just a phone call to the one person I trust to be straight with me and whom I know will listen and not judge no matter what I say. Hub's nurse case manager. I was hysterical. I couldn't breathe, I couldn't see, I couldn't talk. That had to be wrong, I needed more time. He needs more time. Our daughter needs more time. With the help of my friend on the phone I pulled it together and went back to the hubs and doctor. We left the building and things started hitting me. I was seeing Christmas decorations angry and devastated that if the doctor was right, I will be alone with our daughter next Christmas. We went throughout our day, I promised the Major lunch at Cheesecake factory and he wanted to get me boots for my dress I bought for his promotion ceremony. We sat down for lunch and it was going ok. Then phone calls started coming. One from his previous commander who is now in Germany. I had asked her to call me. Tears rolled as I told her what was happening. There were tears on her end too, which made me cry more. She was family to us, and we love her just as much as she loves us. I knew she would take it hard. Not just because of our bond with her, but because she had already lost and Airman to cancer.
The next call came from another previous commander who happens to be doing the hub's ceremony. I wanted him to know what was going on so he wasn't blindsided when he got her next week.
The next call was the Major's nurse case manager checking on us. I had told him I can't do this. He called to tell me that WE can do this. The Army, the hubs, our families and friends. He reassured me that I wasn't alone. That gave me the strength to suck it up for the Major the rest of the afternoon.
The tough job of telling parents was done. We just needed a break before we told everyone else. Please don't get me wrong, I in no way am giving up on my husband. I am in no way discounting what God can do. I just have to be a realistic planner for our future and use the timeline given to try to get us settled and enjoy as much time as possible.
I am absolutely terrified. I'm not going to lie. Some people may look at me and say that if I'm scared I have no faith. Say what you will. Especially people who aren't living this. I don't want to live my life without my best friend, the love of my life, the father of my child, the man I thought I would never even get to date, but actually did marry him. I'm extremely sad to know our lifestyle that we chose is coming to an end. No more dining out's, award ceremonies, PCS's, new jobs, new military friends, our retirement home in South Carolina. I don't even want to think what my life is going to become right now. I don't want to think of a life without my husband. But yesterday I was told I have to start thinking about it. I was able to shove it out of my mind and pretend it wasn't happening. That maybe some miracle would happen with this treatment and he would be healed and then eventually cured. Instead I was told my husband would not return to work, the new treatment only has a 20% success rate and that is only in adding time. I won't give up on him. I believe if anyone can be stubborn and fight hard just to prove doctors wrong, he can.
But living with that guesstimate, we are planning fun things. Europe, Disney Paris, the UK and perhaps Disney World. It's bitter sweet. I want our daughter to have those experiences with her father. I want to make memories with both of them that she can look back on forever. Knowing she was born with the best father ever and instead of being bitter and angry, she should be thankful that she comes from such a man. That someone loved her so extremely much. I have to keep the fears to myself. The fear of being a single mom. The fear of not doing a good enough job with our daughter. The fear that I won't be able to provide what the two of us would have. I want her to live every day knowing that she had the best father and that I will do everything in my power to make sure she gets where she wants to go in life. She is my number one priority. I don't ever want her to feel like she isn't.
Now is the time for the Major to write letters, to make memories, to make plenty of videos. We're starting to look at houses to settle into in hopes of having some time with him in the place our daughter and I will live. I want it to always be our house. I want her to remember her father there. Even facing these things head on, I can't believe it. I'm sitting here next to the man I love trying not to break down at the though of sitting on this couch without him in a few months. I hate it. I hate this. People keep telling me how unfair it is, how this shouldn't be happening to us. One woman told me there is no advice for this. There is nothing anyone can say. And she was right. Nothing that is said or done can make this different. I just ask for continued prayers. I want as much time with my soldier as possible. Every day that I wake up and have another day with him, I will be thankful.
Love to all of you dear friends and family.
Wednesday, November 28, 2012
Holidays, movies and treatments.
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.
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.
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.
Tuesday, April 10, 2012
So you want to be a SAHM?
So I have been thinking about writing this year in review post. I honestly can't believe it's been a year. I think about all of the things I have accomplished and failed at. There is a whole list of both. In the grand scheme of things none of them really matter, not to anyone else any way. They're my triumphs and missteps, for me to learn from.
Sure I am proud that I was able to learn and grow and keep things running on my own while dealing with medical issues and a needy preschooler. There were days I was so ready to give up, but I just kept pushing on. One thing was constant, those bad days ended and I got to start over the next morning.
I saw this post yesterday about being a stay at home mom. I try not to let things bother me, especially people's opinions or observations because, well...they really don't matter to me. When I see someone talking about how easy it is to be a stay at home mom however...that makes me want to explode. I especially get angry when I see someone complaining about how hard they have it when they're doing a job I did for 3 years in highschool, and they have a husband at home. No, I may not be working right now, but I also don't have anyone to share any of the burden with. I think it would be a fun experiment for those complaining about how little their spouses do to be without them for a week. Just a week. No outside help of any kind. Then let's see if you still think they don't do anything. Let's add onto that, not being able to call your spouse when something unexpected goes wrong and you have to figure it out for yourself. Might change your perspective.
This got me thinking about my stay at home mom status and how much I really do wish to be working part time. Hey, if you think that makes me monster-mom, then that's your opinion and I know a place you can stick it. The truth is, kids and parents need time with people their own age. If you don't get it, you end up with a 3 year old who is telling you that she's in charge, and a mom who is saying things like "macky cheese" and "boo-boo" or "owie"....ugh.
Also, I am good at something. I have a skill and I don't want it to go to waste. I have a passion for something and I want my daughter to be proud of that. I want to raise a child who knows she can grow up and be anything she wants. If she wants to be a stay at home mom, well then that's ok too. There is nothing wrong with being a stay at home mom. I absolutely think if that's what you want to do, then that is wonderful. I have the utmost respect for people who can homeschool their kids and sew the patches on their husband's uniforms. I prefer the tailor and picking out a good school, but we're all different, aren't we? Just because my way is different than yours doesn't mean it's wrong, and vice versa.
One thing I have enjoyed is finding things on Pinterest to keep my boredom at bay. Trying at least one new recipe a week that the hubs might like has brought me some feeling of accomplishment. He jokes that the house is always spotless, so I can't use that for a "gold star" any more. Cooking and baking...now that's where it's at! I don't like to cook. I don't particularly enjoy baking. I am pretty good at both, but the effort and the mess, is it worth it? Yes, I am that woman who is so obsessed with clean, I hate seeing flour on my sparkling counters. I hate the way it floats through the air and lands on my shiny hard wood floor. I am trying to relax though, and of course always have the swiffer vac handy. Hey, I'm not super mom, and in my line of work, clean is necessary. You don't want to be loaded into an ambulance with someone else's blood splattered all over, do you? Didn't think so. Yes, flour is different than blood, but mess is mess. Ok, apples and oranges, don't judge!
Anyway. I have started compiling recipes. I have been hand writing them on pretty little recipe cards so hubs can look through them and pick out which ones he would like to try without scrolling through the few hundred ones I have pinned. I also have the world's pickiest eater in the form of a cute, button-nosed Tinkerbell-ish little girl. I have found a couple successful dishes that she will eat. This is a huge relief since I hate giving in to her chicken nugget or easy mac obsession. Before you ask, yes I have tried making home made versions of both, and no, she won't eat them. If someone could please tell me why the disgusting, processed versions taste so much better to unrefined little palettes, I would be grateful.
Last night I decided to try a new quinoa recipe. I love quinoa. I was hoping these cheesy little quinoa bites would be something Little Tink would eat. I was chopping and shredding the ingredients while cooking my quinoa, quite excited to taste this new creation. Everything was ready to mix together, all I needed were the eggs. I go to the refrigerator. Eggs. OH MYYYYY GOOOOOOOSHHHHH----- NOOOO! EGGGGGSSSS!!!! There was the egg carton. The day after Easter. Filled with pastel colored hard boiled eggs. *Slaps forehead* There is my bowl full of shredded carrots, cheese and other ingredients sitting beside my beautifully cooked quinoa. So I either scrap the whole project or run to the store for eggs. Or...yes, there has got to be something I can do with something I already have. So I reach for my most important kitchen tool. The iPhone. What would I do without it? I know, I know...there are people who live without them. I don't know how, but they do. Egg substitute....searching, searching. There it is! A teaspoon of flax meal with a quarter cup of water! I HAVE THAT! There are a few things I always have: flax meal, applesauce, greek yogurt, coconut milk...and yeah, before you get smart, eggs are usually among that list.
There I am, in my kitchen, feeling smug and proud that I was able to save my recipe without leaving the house. I finished mixing, put the stuff into the cute little muffin tins and popped them into the oven. I'm smiling at my oven like an idiot now. Suddenly I get this image in my head of the 18 year old version of me walking into my kitchen in her combat boots and BDU's, slapping the smile off my face saying "Wake up girl! Go get your hands into a bloody trauma because you, my friend are delusional!" I started laughing out loud. An accomplishment to that girl was getting a suicidal patient to go to the hospital with her instead of having the cops cuff them...or getting the cranky patient who hated everyone to laugh. Figuring out how to get a 90 year old patient who was wedged between the toilet and the bathtub out without compromising c-spine. And there I am standing in front of my quinoa muffin win. Oh the shame. Yeah, yeah, food and saving lives here we go with the apples and oranges again. My point is, I'm not anywhere near where I thought I would be. I never thought life would consist of being a single mom for a year at a time, cooking and baking my way through a deployment. I can't wait to get back on a rig and start using my brain again. I must say though...the cheesy quinoa bites- DELISH!!! Being a stay at home mom isn't the easiest job in the world. Being a working mom isn't either. I would never covet one for the other. You do what you have to do with your situation and take whatever you can to get some happiness in there somewhere.
Sure I am proud that I was able to learn and grow and keep things running on my own while dealing with medical issues and a needy preschooler. There were days I was so ready to give up, but I just kept pushing on. One thing was constant, those bad days ended and I got to start over the next morning.
I saw this post yesterday about being a stay at home mom. I try not to let things bother me, especially people's opinions or observations because, well...they really don't matter to me. When I see someone talking about how easy it is to be a stay at home mom however...that makes me want to explode. I especially get angry when I see someone complaining about how hard they have it when they're doing a job I did for 3 years in highschool, and they have a husband at home. No, I may not be working right now, but I also don't have anyone to share any of the burden with. I think it would be a fun experiment for those complaining about how little their spouses do to be without them for a week. Just a week. No outside help of any kind. Then let's see if you still think they don't do anything. Let's add onto that, not being able to call your spouse when something unexpected goes wrong and you have to figure it out for yourself. Might change your perspective.
This got me thinking about my stay at home mom status and how much I really do wish to be working part time. Hey, if you think that makes me monster-mom, then that's your opinion and I know a place you can stick it. The truth is, kids and parents need time with people their own age. If you don't get it, you end up with a 3 year old who is telling you that she's in charge, and a mom who is saying things like "macky cheese" and "boo-boo" or "owie"....ugh.
Also, I am good at something. I have a skill and I don't want it to go to waste. I have a passion for something and I want my daughter to be proud of that. I want to raise a child who knows she can grow up and be anything she wants. If she wants to be a stay at home mom, well then that's ok too. There is nothing wrong with being a stay at home mom. I absolutely think if that's what you want to do, then that is wonderful. I have the utmost respect for people who can homeschool their kids and sew the patches on their husband's uniforms. I prefer the tailor and picking out a good school, but we're all different, aren't we? Just because my way is different than yours doesn't mean it's wrong, and vice versa.
One thing I have enjoyed is finding things on Pinterest to keep my boredom at bay. Trying at least one new recipe a week that the hubs might like has brought me some feeling of accomplishment. He jokes that the house is always spotless, so I can't use that for a "gold star" any more. Cooking and baking...now that's where it's at! I don't like to cook. I don't particularly enjoy baking. I am pretty good at both, but the effort and the mess, is it worth it? Yes, I am that woman who is so obsessed with clean, I hate seeing flour on my sparkling counters. I hate the way it floats through the air and lands on my shiny hard wood floor. I am trying to relax though, and of course always have the swiffer vac handy. Hey, I'm not super mom, and in my line of work, clean is necessary. You don't want to be loaded into an ambulance with someone else's blood splattered all over, do you? Didn't think so. Yes, flour is different than blood, but mess is mess. Ok, apples and oranges, don't judge!
Anyway. I have started compiling recipes. I have been hand writing them on pretty little recipe cards so hubs can look through them and pick out which ones he would like to try without scrolling through the few hundred ones I have pinned. I also have the world's pickiest eater in the form of a cute, button-nosed Tinkerbell-ish little girl. I have found a couple successful dishes that she will eat. This is a huge relief since I hate giving in to her chicken nugget or easy mac obsession. Before you ask, yes I have tried making home made versions of both, and no, she won't eat them. If someone could please tell me why the disgusting, processed versions taste so much better to unrefined little palettes, I would be grateful.
Last night I decided to try a new quinoa recipe. I love quinoa. I was hoping these cheesy little quinoa bites would be something Little Tink would eat. I was chopping and shredding the ingredients while cooking my quinoa, quite excited to taste this new creation. Everything was ready to mix together, all I needed were the eggs. I go to the refrigerator. Eggs. OH MYYYYY GOOOOOOOSHHHHH----- NOOOO! EGGGGGSSSS!!!! There was the egg carton. The day after Easter. Filled with pastel colored hard boiled eggs. *Slaps forehead* There is my bowl full of shredded carrots, cheese and other ingredients sitting beside my beautifully cooked quinoa. So I either scrap the whole project or run to the store for eggs. Or...yes, there has got to be something I can do with something I already have. So I reach for my most important kitchen tool. The iPhone. What would I do without it? I know, I know...there are people who live without them. I don't know how, but they do. Egg substitute....searching, searching. There it is! A teaspoon of flax meal with a quarter cup of water! I HAVE THAT! There are a few things I always have: flax meal, applesauce, greek yogurt, coconut milk...and yeah, before you get smart, eggs are usually among that list.
There I am, in my kitchen, feeling smug and proud that I was able to save my recipe without leaving the house. I finished mixing, put the stuff into the cute little muffin tins and popped them into the oven. I'm smiling at my oven like an idiot now. Suddenly I get this image in my head of the 18 year old version of me walking into my kitchen in her combat boots and BDU's, slapping the smile off my face saying "Wake up girl! Go get your hands into a bloody trauma because you, my friend are delusional!" I started laughing out loud. An accomplishment to that girl was getting a suicidal patient to go to the hospital with her instead of having the cops cuff them...or getting the cranky patient who hated everyone to laugh. Figuring out how to get a 90 year old patient who was wedged between the toilet and the bathtub out without compromising c-spine. And there I am standing in front of my quinoa muffin win. Oh the shame. Yeah, yeah, food and saving lives here we go with the apples and oranges again. My point is, I'm not anywhere near where I thought I would be. I never thought life would consist of being a single mom for a year at a time, cooking and baking my way through a deployment. I can't wait to get back on a rig and start using my brain again. I must say though...the cheesy quinoa bites- DELISH!!! Being a stay at home mom isn't the easiest job in the world. Being a working mom isn't either. I would never covet one for the other. You do what you have to do with your situation and take whatever you can to get some happiness in there somewhere.
Wednesday, April 4, 2012
The cardiac chronicles...and an upbeat tune
"Go ahead, push yourself." Those are basically the words I got as I was leaving the electrophysiologist's office last week. At age 26 this was the 8th one I have been to. 2 of the 8 have actually operated on my heart. Some don't consider cardiac ablations operations, but let me tell you, when it's your heart they're sticking probes and catheters and lasers into while you're out, you consider it a pretty significant thing. Especially when they tell you there is a 70% risk you could come out of it with a pacemaker.
I guess we should start with a little back story. At age 18, I had been an EMT for 2 years. I grew up with a respiratory therapist for a mom. A mom that had been through a cardiac ablation for SVT (supraventricular tachycardia). One night I was lying in bed feeling sluggish and like my heart was skipping beats. After checking my pulse and finding that it was indeed irregular, I freaked out. The next day at work I was feeling the same way and the medic I was working with hooked me up to our LifePak 12 and found sinus tachycardia with multiple PVC's, or premature ventricular contractions, which were those skipped beats I was feeling. So off to the cardiologist I went with my handy EKG strip in hand. It took 3 years, multiple holter monitors and one very effective event monitor to find the exact problem. I had tried 2 different medications that only made me extremely tired and didn't correct the problem in those 3 years as well. I was thankful to be referred to an electrophysiologist who had also taken care of the Vice President of the United States and who didn't hesitate to say "Let's stop messing around with medication and get this fixed". A very scary experience at the age of 21, but I felt so much better afterward and was able to lose 30 pounds by getting back to the gym and running with my husband. I was eating better and swore off any form of energy drink and limited my coffee intake, as well as watching my salt intake. I was given the go ahead to have a baby, but cautioned that I would need to have special care during pregnancy to make sure nothing went wrong. Some doctors have told me one arrhythmia has nothing to do with the other, some have said that my heart is more susceptible to arrhythmias because I have had them in the past. I tend to err on the side of caution. After Little Tink was born, I was focused on staying healthy and losing that baby weight. I got down to my pre baby shape and was loving walking every day with the little one and going to the gym a few times a week. Then the problems started all over. I noticed my workouts getting more and more difficult. I was getting winded at things I had been doing with such ease before. I had a newborn, but knew the tiredness I was feeling was just like what I had felt before. It was back. There I was again, checking my pulse every 10 minutes to see just how fast it was beating. The fear was overpowering and I stopped going to the gym. I still walked every day, but increasing dizziness and one very scary ER trip landed me right back in another Dr.'s office. This one was not so great. He found the problem, but since it was in the sinus node of my heart (the natural pacemaker of your heart, if you will) he didn't want to operate. So what was I supposed to do? Take a medication that would make me spacey and tired, unable to keep up with a very active 18 month old? Not being able to do the things I loved like working out and being active? Unacceptable. SVT and atrial tachycardia may not be life threatening in the sense that you are going to drop over dead from them, but they can turn into more. They also wear down your heart over time. I wasn't going to settle for his answer. With an upcoming move, I decided to go back to PA and go one of the best hospitals I knew. A family friend had given me a recommendation for his electrophysiologist. I was evaluated and scheduled for surgery. This was the one where I was told there was a 70% risk of coming out with a pacemaker. That was something that almost made me not go through with it. Yes, it's a stupid thing to be afraid of a pacemaker, I would tell any patient that they are more helpful than harmful and they let you enjoy a normal life. But I'm the worst patient ever and I rarely let what I know of medicine calm me down, because hey, it's my body. I ended up having the ablation, and the first words out of the doctor's mouth were "We got it, and no pacemaker for you!". I was so relieved. And then the regret came in the next few days. My heart was fixed, but I was still having abnormal beats while my heart healed. They were different now. Harder, stronger and more like a horrible hiccup in my heart. I was bradycardic and so run down. A friend of mine hooked me up to a monitor when my heart rate dipped into the 40's and it showed a bundle branch block. I was sent to the ER where the nurses thought I was having a heart attack. I was struggling with chest pain and dizziness while they tried to figure out what was going on with this 24 year old girl. Thankfully, my doctor came to the rescue and said "No, she's not having a heart attack, that's the way her heart beats now that we modified her sinus node". By that time the ativan had kicked in and I was as high as a kite, laughing at the fact they got it wrong. Not nice, I know. After that, I felt pretty good and my heart got back to normal after about 3 months.
I know the importance of keeping your heart strong and healthy. I work very hard at this because even though I can't do much about an electrical problem in my heart, I can keep it as healthy as possible so it is better off if another problem arises. In this kind of life, the military one, I don't have much control over my stress level. Sure, I can choose how I handle it, but cutting down stress? Not sure how to do that. Last summer I bought an elliptical, knowing I didn't want to go through a deployment in Alaska, sitting on my butt in the house all winter. In the summer I was able to jog and bike with Little Tink, but in the winter...forget it. Winter sports aren't my thing. Cold isn't my thing. This lovely machine took a beating, let me tell you. The place I was in emotionally when I bought it was bad. I would have days when I was listening to angry girl music yelling out the lyrics like I was yelling them to a real person while I jogged my way through an iFit workout. Other days I would let the depressing songs play on Pandora and bawl while Jillian Michaels would tell me to "Keep going".
A few months ago I started having trouble getting through the workouts as they got tougher. So I went back to easier ones. Even those were getting hard. I was having irregular heartbeats again. This time there was no tachycardia. I kept a log of my heart rate at rest and while working out. It was wonderful. I am even at the point now where I have a slow resting heart rate, which my doctors are happy about. My heart is strong, but there was still something wrong. Yes, I am more aware of what a PVC or PAC feels like. I know when I feel bigeminy or trigeminy. I also know that I shouldn't feel dizzy or out of breath doing workouts that I have been doing for months. I shouldn't have to stop and try to catch my breath when I stand up from the couch because my heart is flopping like a goldfish out of water. Here comes Dr. number 8.
I had seen a doctor in the town where we live who did tests and concluded that my heart was healthy and I was just more sensitive to the minor things that were going on. These records and tests were sent to the new doctor out of town. There were different options that were given. We can do a year long, implanted event monitor. The placement would be much like a pacemaker, under the skin and would record my heart for a year. We could go for another ablation, probably not find the exact problem and it would be a waste. Medication isn't an option because of my previous surgeries. They would now be more dangerous than beneficial. Yes, they could see there was another arrhythmia, but it was benign. I could live with it. Yes, it was disruptive to my lifestyle, but I could choose to push through it. I could choose to ignore what was scaring me so much and go on. With those words and that ok given by someone who knew much better than I did, I made up my mind. I would take his advice and "go for it"...until I fell over or went into a dangerous rhythm, I would be ok. I can't sit around worrying about that though. The worst thing would be to stop the things that are good for me, like running and doing my leg workouts. So knowing now that I need to keep my potassium and magnesium at a high normal level, I push forward.
The past few days I have been doing workouts that literally make sweat drip off my body. It feels great. I have rid my iPod of any negative songs and replaced them with upbeat, happy tunes that make me smile and run harder and faster. Today I had a little help from Andy Grammer...
"Only rainbows after rain
the sun will always come again
and it's a circle, circling around again
it comes around again
But you gotta keep your head up, oh
and you can let your hair down, eh
I know it's hard
I know it's hard to remember sometimes
But you gotta keep your head up, oh
And you can let your hair down, eh!"
Yeah, I had that one on repeat. Working out is a lot more enjoyable when you're not using anger to fuel your momentum. So I'm all stocked up on dried mango, bananas and keeping my diet heart healthy with plenty of oatmeal and whole grains. Don't get me wrong, there are going to be days when this girl needs to grab a beer and a steak and I'm going to ignore my hands when they swell from the salt. I do believe my recent attitude adjustment and change in my outlook on life has helped a lot too. You can listen to songs that tell people "Forget you" to focus on the anger you feel, or you can fill your mind with happy thoughts and lyrics that make you feel like dancing around the house like a fool...so now, back to my silly little song...."This is just a journey, drop your worries...you are gonna turn out fine, ooooohh you turn out fine..."
Tuesday, April 3, 2012
Things you may be taking for granted
I don't intend for this post to be condescending or mean. I don't believe everyone takes things for granted. I know I certainly did. It took a year of being by myself with a toddler, trying to maintain a house, a yard, 2 vehicles, a dog and myself to realize that maybe, just maybe he did more than I thought. Because right now what I'm thinking about isn't that his clothes are going to be all over the floor again, that his PT gear will be sitting in his gym bag, stinking up my entry-way until I wash them, that there will be muddy boot prints unless I ask him to leave them at the door, or that I will have to clean up after a guy in the bathroom again...you know, all the stuff a wife would nag about.
What I am thinking about is that I will no longer have to be the only person putting our daughter to bed. I will have someone else to talk to at the end of the day, besides a cute chocolate lab. I'm thinking about waking up to he and Little Tink playing quietly in the living room on the weekend so I can get an extra hour of sleep. Having him walk back in the door after he's already left for work because he stopped to buy me a Vanilla chai. Having him come home for lunch to spend time with us even if it means he has to eat on the drive back. Having him drive me home after I have a procedure done, instead of waiting an hour after so I can drive myself home. Cuddling up to him with a good book while he plays the "idot box" as my sister in law so affectionately and accurately named it...that's the PS3 if you couldn't figure it out. Not being the only person that has to drive. That is a huge one. When he was home on R&R, I would just automatically go for the driver's seat...but he sweetly said "I'll drive if you want". Not having to be the only person with responsibility just seems like such a relief. Sure, I'll still mow the yard because he blows up with hives at the very sight of trimmed grass, but he will take the vehicles to get serviced so I don't have to sit with a squirmy toddler and wait for them. I'll have dinner on the table when he's home from work and do the dishes so he can spend time with his daughter, but he'll cook for me all weekend long and maybe surprise me with a night out during the week. I'll gag at opening that gym bag, but he'll hold my hand while they take a pint of blood with a needle the size of a straw.
I may nag and complain about cleaning up after him. I may accuse him of being a 3rd child (I consider the dog one), and say things like "I'm NOT your mother" when he asks me why he doesn't have any clean socks. I may lament the fact that I am not doing what I am passionate about right now, and curse every dirty dish that is put into an empty sink, but I realize now what I want more than anything is just to have him here. I don't care about the laundry or the dishes or the dust on the tv. I care about having my best friend beside me when I start my day and when it ends. I long for conversations that aren't ended by a bad internet connection or a blast from a mortar. I just want the simple things back. After seeing what I can do on my own, I know I'm capable of many things and taking care of myself and my child, but that's not the way I want it. Life is a lot more fun when you have someone to share it with.
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