Day 257
The results are in from our previous PET scan. There is no sign of lymphoma. There is still a residual mass in the mediastinal area which is probably dead tissure. It should start reducing slowly over time but there will always be remnants left. Jackie is still in the red zone the next 2 years and will repeat another PET scan in 4-6 months along with blood work every 4 months. After two years she will be in the yellow zone for another 3. The 5 year survival period is the all clear marker. There is definitely rays of sunshine gleaming upon the world today.
Wednesday, August 11, 2010
Tuesday, August 3, 2010
Day 248
Have you ever seen a fight or a match go on and on without no victory in sight. In a 2010 US Open match two young athletes were locked in a neverending match that was finally won after 138 sets. A never ending struggle, is what I can coin our relationship with the insurance company. We try so hard to abide by their rules and go only where we are contracted to be seen. However, they still ping pong us back and forth like we have nothing else to do during the day but entertain them over the phone. Just about two months before today Jackie had already received two PET scans at the hospital imaging center. Her oncologist explained that having the same machine scan your progress was important due to the different calibrations of each machine. We abided to the insurance company and found a happy medium where both insurance would pay and the doctor was covered. For this last scan however, the insurance would not pay. After two weeks for bouncing back and forth to get a referral they decide to send Jackie to a different imaging center. After a few phone calls they even told us there is no record of previous scans, even though the PET scans were already paid for. “Huh?”, that was my reaction when I heard it on the phone. How is one company so irresponsible that they pay out money without keeping tabs on who is on the receiving end. After a few more phone calls I found out that sometime between the last two months they cancelled their contract with the hospital we were receiving scans at. Just like a bully would do, they said we either pay for the scan ourselves or abide. So once again, we timidly follow orders and end up at a different imaging center. This is a definitely a one sided match where the little guy always end up losing.
Have you ever seen a fight or a match go on and on without no victory in sight. In a 2010 US Open match two young athletes were locked in a neverending match that was finally won after 138 sets. A never ending struggle, is what I can coin our relationship with the insurance company. We try so hard to abide by their rules and go only where we are contracted to be seen. However, they still ping pong us back and forth like we have nothing else to do during the day but entertain them over the phone. Just about two months before today Jackie had already received two PET scans at the hospital imaging center. Her oncologist explained that having the same machine scan your progress was important due to the different calibrations of each machine. We abided to the insurance company and found a happy medium where both insurance would pay and the doctor was covered. For this last scan however, the insurance would not pay. After two weeks for bouncing back and forth to get a referral they decide to send Jackie to a different imaging center. After a few phone calls they even told us there is no record of previous scans, even though the PET scans were already paid for. “Huh?”, that was my reaction when I heard it on the phone. How is one company so irresponsible that they pay out money without keeping tabs on who is on the receiving end. After a few more phone calls I found out that sometime between the last two months they cancelled their contract with the hospital we were receiving scans at. Just like a bully would do, they said we either pay for the scan ourselves or abide. So once again, we timidly follow orders and end up at a different imaging center. This is a definitely a one sided match where the little guy always end up losing.
Thursday, July 15, 2010
Day 234
Has anyone ever had an electric shock sensation creep up the back for no apparent reason? The slightest touch or brush can cause a strange tingling sensation. One of the possibilities is known as Lhermitte’s Sign. Lhermitte’s sign is found as a symptom in 33% of multiple scloerosis patients. Studies have also shown that the sign can be found as a side effect to patients who have undergone radiation to the back. So, why is my wife experiencing this sensation. Of course, my diagnosis may be completely false, but after much research this is the best explanation I could obtain. Then again, her tingling had transformed into back pain. It is utterly confusing. Is this another unexplained mystery of chemotherapy and radiation. Everybody has different symptoms before, during, and after therapy. How safe is cancer treating strategies?
I have been challenging myself with the question of why, what, and how lately. Why am I persisting and fighting with my wife, my career, and our future? What is making me a fighter that wants this marriage to flourish? How is Hodgkin’s changing our marriage, career, and future? I am sure others have different variations of these questions that apply to themselves. Of course, I did make my wedding vows and profess my love to my wife 6 months before she was diagnosed. Call me old fashioned, but I believe a persons vows should be honored and kept forever. But there must be further inspiration then repeating the words of the pastor at the altar. What drives me to keep going is the love I have for Jackie. If I love Jackie as much as I do, there will be a will and a way to succeed. Whether this will and way is found in your marriage, carrer, or yourself. That is my purpose.
Shamefully I did come to my ephiphany by watching a young skateboarder’s love for his sport propel him to the top of his sport, his company, and his friendships. However, it did make me realize I just needed to realize why I was doing, whom I was doing it for, and I will find a way to get there.
Has anyone ever had an electric shock sensation creep up the back for no apparent reason? The slightest touch or brush can cause a strange tingling sensation. One of the possibilities is known as Lhermitte’s Sign. Lhermitte’s sign is found as a symptom in 33% of multiple scloerosis patients. Studies have also shown that the sign can be found as a side effect to patients who have undergone radiation to the back. So, why is my wife experiencing this sensation. Of course, my diagnosis may be completely false, but after much research this is the best explanation I could obtain. Then again, her tingling had transformed into back pain. It is utterly confusing. Is this another unexplained mystery of chemotherapy and radiation. Everybody has different symptoms before, during, and after therapy. How safe is cancer treating strategies?
I have been challenging myself with the question of why, what, and how lately. Why am I persisting and fighting with my wife, my career, and our future? What is making me a fighter that wants this marriage to flourish? How is Hodgkin’s changing our marriage, career, and future? I am sure others have different variations of these questions that apply to themselves. Of course, I did make my wedding vows and profess my love to my wife 6 months before she was diagnosed. Call me old fashioned, but I believe a persons vows should be honored and kept forever. But there must be further inspiration then repeating the words of the pastor at the altar. What drives me to keep going is the love I have for Jackie. If I love Jackie as much as I do, there will be a will and a way to succeed. Whether this will and way is found in your marriage, carrer, or yourself. That is my purpose.
Shamefully I did come to my ephiphany by watching a young skateboarder’s love for his sport propel him to the top of his sport, his company, and his friendships. However, it did make me realize I just needed to realize why I was doing, whom I was doing it for, and I will find a way to get there.
Day 218
I am only counting these days for completeness sake. Time has sure lapsed from days to week to months. Today was the day of Jackie’s port removal. Have we been over anxious to have this day come. From bickering whether or not it was too early to convincing the insurance company this was a needed surgery. It is no easy task and not a cheap one either. Her port entry cost over 13,000 dollars and left us with a copay of 1000. The removal should be a mirror image. However, this is a necessity and also a happy day. This is considered a good surgery. Why are there good and bad surgeries. Having a person cut into you should never be considered “good.” In comparison why do be say if you are going to have cancer, Hodgkin’s is the one to have. Hodgkin’s is considered the “good” cancer out of the family. Shame on anyone who views Hodgkin’s less serious than any other cancer. The pain, tears, stress, and anxiety of Jackie and me will blow anyone who is naïve to think Hodgkin’s is the “good” cancer. If it is so good why are we still visiting doctors at Day 218 until forever. This is a lifetime of fighting secondary cancers, systemic conditions, side effects, and even relapse.
Surgery was set at the crack of dawn on this great surgery day. I took the day off to support my wife. She was the first one for surgery. It seemed fairly simple with local anesthesia. There was no anesthesiologist present which actually scared me. Either this was a really confident doctor or I just sent my wife in for slaughter. Luckily the lattter was only a figment of my imagination. With a goodbye kiss and a smile I let go of Jackie’s hand and watched her role off into the O.R. What a brave young girl! I admire her courage and faith. I am utterly convinced that is what made her beat this stupid disease. As I sat in the waiting room listening to music I noticed all the nervous family members of others. Obviously there were not getting a “good” surgery. Actually I felt awkward having a smile on my face while enjoying music. This guilt made me stuff my music player back into my pocket.
Thirty minutes later the nurse pops in saying that my wife is ready to get out of the hospital. HUH?, was all I could think in my head. I walk back into the recovery room and there I see a ray of sunshine smiling at me. All my fears melt and my breathing returned to normal.
The rest of the day was uneventful. We tried to do as little as possible by watching movies, reading, and talking. Dinner was made, fears were gone, the port was out, and another wonderful day with my wife was done.
I am only counting these days for completeness sake. Time has sure lapsed from days to week to months. Today was the day of Jackie’s port removal. Have we been over anxious to have this day come. From bickering whether or not it was too early to convincing the insurance company this was a needed surgery. It is no easy task and not a cheap one either. Her port entry cost over 13,000 dollars and left us with a copay of 1000. The removal should be a mirror image. However, this is a necessity and also a happy day. This is considered a good surgery. Why are there good and bad surgeries. Having a person cut into you should never be considered “good.” In comparison why do be say if you are going to have cancer, Hodgkin’s is the one to have. Hodgkin’s is considered the “good” cancer out of the family. Shame on anyone who views Hodgkin’s less serious than any other cancer. The pain, tears, stress, and anxiety of Jackie and me will blow anyone who is naïve to think Hodgkin’s is the “good” cancer. If it is so good why are we still visiting doctors at Day 218 until forever. This is a lifetime of fighting secondary cancers, systemic conditions, side effects, and even relapse.
Surgery was set at the crack of dawn on this great surgery day. I took the day off to support my wife. She was the first one for surgery. It seemed fairly simple with local anesthesia. There was no anesthesiologist present which actually scared me. Either this was a really confident doctor or I just sent my wife in for slaughter. Luckily the lattter was only a figment of my imagination. With a goodbye kiss and a smile I let go of Jackie’s hand and watched her role off into the O.R. What a brave young girl! I admire her courage and faith. I am utterly convinced that is what made her beat this stupid disease. As I sat in the waiting room listening to music I noticed all the nervous family members of others. Obviously there were not getting a “good” surgery. Actually I felt awkward having a smile on my face while enjoying music. This guilt made me stuff my music player back into my pocket.
Thirty minutes later the nurse pops in saying that my wife is ready to get out of the hospital. HUH?, was all I could think in my head. I walk back into the recovery room and there I see a ray of sunshine smiling at me. All my fears melt and my breathing returned to normal.
The rest of the day was uneventful. We tried to do as little as possible by watching movies, reading, and talking. Dinner was made, fears were gone, the port was out, and another wonderful day with my wife was done.
Sunday, June 27, 2010
Day ????
Day 196, 197, 198, … Day forever… What is the point of counting? I know I have not posted for awhile. I have really found that the battle has been won but the war is not over.
There is no finale to this even. This isn’t like the world cup where the end is in a month. Hodgkin’s is real and it is a long term event. Even if the disease has been cured there is still risk involved next month, next year, and the future. Jackie and I are extra cautious and have been hypersensitive to any sort of abnormal signs. Her neck is still swollen and that really has been bothering the two of us. We keep palpating and feeling for anything, even though she has no lymph node there anymore. We blame it on the hot desert heat that her neck is swelling, yet we still worry. I worry about hypothyrodism, I worry about Hashimotos disease, I worry about everythig. I have reviewed over and over the symptoms of hypothyroidism. I have not noticed any signs of fatigue, depression, weight gain, puffy face, muscle aches, stiff joints, and so on. It is the middle of summer so I won’t be able to tell if she has increase sensitivity to cold. We have been hitting the gym a lot so maybe that’s counteracting her weight gain. The thoughts are endless. I have no idea what the future holds.
As we progress Jackie is scheduled to take out her mediport this week. I know she is ecstatic about removing this alien device from her body. This is the one telltale sign of Hodgkin’s still left. Her hair is growing back, battle scars are becoming fainter, so it is time to take this port out. After that we wait another month for a scan. Then what do we do? We are still hesitant to move on. Do our lives belong to us or Hodgkin’s?
Day 196, 197, 198, … Day forever… What is the point of counting? I know I have not posted for awhile. I have really found that the battle has been won but the war is not over.
There is no finale to this even. This isn’t like the world cup where the end is in a month. Hodgkin’s is real and it is a long term event. Even if the disease has been cured there is still risk involved next month, next year, and the future. Jackie and I are extra cautious and have been hypersensitive to any sort of abnormal signs. Her neck is still swollen and that really has been bothering the two of us. We keep palpating and feeling for anything, even though she has no lymph node there anymore. We blame it on the hot desert heat that her neck is swelling, yet we still worry. I worry about hypothyrodism, I worry about Hashimotos disease, I worry about everythig. I have reviewed over and over the symptoms of hypothyroidism. I have not noticed any signs of fatigue, depression, weight gain, puffy face, muscle aches, stiff joints, and so on. It is the middle of summer so I won’t be able to tell if she has increase sensitivity to cold. We have been hitting the gym a lot so maybe that’s counteracting her weight gain. The thoughts are endless. I have no idea what the future holds.
As we progress Jackie is scheduled to take out her mediport this week. I know she is ecstatic about removing this alien device from her body. This is the one telltale sign of Hodgkin’s still left. Her hair is growing back, battle scars are becoming fainter, so it is time to take this port out. After that we wait another month for a scan. Then what do we do? We are still hesitant to move on. Do our lives belong to us or Hodgkin’s?
Wednesday, May 26, 2010
Day 191-195
Time has been flying by. I hardly can keep track of what has been going on. Everything moved so smoothly through treatment and now days are turning into months. I can’t even remember the last time Jackie went to see the doctor. We are still waiting on removing the mediport. Insurance companies are the masters of procrastinators. Until it's medically necessary, nothing will happen. So Jackie and I are constantly calling and pestering them to speed up the process. The port was put in within 3 days, why is it so difficult to take out.
Both our lives are doing very well. Jackie doesn’t seem to have any side effects. Her hair is definitely growing in denser. Her energy level is up. Her throat is not sore. She is gaining strength back. She has gone back to work more now. Life continues…
Time has been flying by. I hardly can keep track of what has been going on. Everything moved so smoothly through treatment and now days are turning into months. I can’t even remember the last time Jackie went to see the doctor. We are still waiting on removing the mediport. Insurance companies are the masters of procrastinators. Until it's medically necessary, nothing will happen. So Jackie and I are constantly calling and pestering them to speed up the process. The port was put in within 3 days, why is it so difficult to take out.
Both our lives are doing very well. Jackie doesn’t seem to have any side effects. Her hair is definitely growing in denser. Her energy level is up. Her throat is not sore. She is gaining strength back. She has gone back to work more now. Life continues…
Sunday, May 23, 2010
Day 186-191
The days have gone by extremely fast. Jackie has been working more days now, and I am keeping busy with my own activities. There has really been no talk, appointments, or bills relating to Hodgkin’s. Jackie had a few days of a slight sore throat and maybe redness of the skin due to radiation. It hasn’t really bothered her too much and it is basically gone now. Back to normal. We are getting life back on track. Hopefully we will be taking that long awaited honeymoon also that she so deserves. We are looking for a new place to work, but every road encountered always leads to insurance issues. I’m not ready to give up this sense of health security after everything we went through. The reality of living in the United States constantly reminds me of the truth in this country. We are one of the richest and one of the powerful, if not the most powerful, county on earth. Yet our citizens cannot see a doctor if they are sick. Even two young individuals who work in the health profession treating other people’s problems worry about not being able to treat their own. This country needs to sit back and rethink. How can one feel pride in their country and show love to their nation when the country cannot even protect them when needed?
The days have gone by extremely fast. Jackie has been working more days now, and I am keeping busy with my own activities. There has really been no talk, appointments, or bills relating to Hodgkin’s. Jackie had a few days of a slight sore throat and maybe redness of the skin due to radiation. It hasn’t really bothered her too much and it is basically gone now. Back to normal. We are getting life back on track. Hopefully we will be taking that long awaited honeymoon also that she so deserves. We are looking for a new place to work, but every road encountered always leads to insurance issues. I’m not ready to give up this sense of health security after everything we went through. The reality of living in the United States constantly reminds me of the truth in this country. We are one of the richest and one of the powerful, if not the most powerful, county on earth. Yet our citizens cannot see a doctor if they are sick. Even two young individuals who work in the health profession treating other people’s problems worry about not being able to treat their own. This country needs to sit back and rethink. How can one feel pride in their country and show love to their nation when the country cannot even protect them when needed?
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