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?
Monday, May 17, 2010
Day 183-185
The next step. What is the next step now that Jackie has finished her chemotherapy and radiation? There is no strict protocol on what to do next. We want to move on with our lives. We want to move out of this place in the desert which has both saved us and held us captive. We are refusing to budge unless one of us finds full health benefits to cover ourselves. I am not ready to go through another crazy insurance ordeal again.
There are so many options. Jackie will need another surgery to remove her mediport. Like I mentioned earlier, there is no set time to remove the device. I know she is ready to remove it though. Secondly, Jackie will need another PET scan anywhere between 2-6 months to make sure everything is clean. Jackie’s oncologist insists on us having the scan done in the same room with the same machine. Consistency is the key! Having the same calibrated machine with the same radiologist reading the results will ensure peace and comfort I guess. We are waiting for the oncologist to request insurance for those two procedures to be done. So who really knows how long we will be in the desert still. Patience must persist.
The next step. What is the next step now that Jackie has finished her chemotherapy and radiation? There is no strict protocol on what to do next. We want to move on with our lives. We want to move out of this place in the desert which has both saved us and held us captive. We are refusing to budge unless one of us finds full health benefits to cover ourselves. I am not ready to go through another crazy insurance ordeal again.
There are so many options. Jackie will need another surgery to remove her mediport. Like I mentioned earlier, there is no set time to remove the device. I know she is ready to remove it though. Secondly, Jackie will need another PET scan anywhere between 2-6 months to make sure everything is clean. Jackie’s oncologist insists on us having the scan done in the same room with the same machine. Consistency is the key! Having the same calibrated machine with the same radiologist reading the results will ensure peace and comfort I guess. We are waiting for the oncologist to request insurance for those two procedures to be done. So who really knows how long we will be in the desert still. Patience must persist.
Friday, May 14, 2010
Day 182
The day Jackie and I have been waiting for has arrived. Last day of treatment. Jackie brought in doughnuts for all the radiation staff. She had one final bout of treatment and bid farewell. The radiation oncologist is so nice and thoughtful to invite us to ask any questions whenever we feel like. She told us to stop by anytime. It is definitely a happy day. Jackie has such a big smile on her face. No more stupid stickers that she has to hide with turtlenecks. She is free to be Jacqueline. I am extremely grateful to share this moment and celebration. Time to move on!
The day Jackie and I have been waiting for has arrived. Last day of treatment. Jackie brought in doughnuts for all the radiation staff. She had one final bout of treatment and bid farewell. The radiation oncologist is so nice and thoughtful to invite us to ask any questions whenever we feel like. She told us to stop by anytime. It is definitely a happy day. Jackie has such a big smile on her face. No more stupid stickers that she has to hide with turtlenecks. She is free to be Jacqueline. I am extremely grateful to share this moment and celebration. Time to move on!
Thursday, May 13, 2010
Day 180-181
One more day left! How exciting? My marriage has been built on this ordeal. Married life for me was making sure my wife was taken care of, making sure she didn’t get neutropenic, that there were no germs on countertops. I took her temperature, watched her go through chemotherapy, and made her lousy tasting soup. That is what has bonded the two of us. I wonder what will be the next adhesive in our lives.
Hodgkin’s lymphoma is forever a part of us. I am not ever going to able to put this in the past. Everyday I will be worried about remission, everyday I will be worried about if Jackie is feeling ok. It is going to linger in me forever. I can already feel its ramifications lately. I am worrying if Jackie and I are going to be able to move out of our current neighborhood because she has her oncologists and history here. I worry that the clean scan she is receiving is “truly” clean. Are all these thoughts normal? Am I being obsessed with Hodgkin’s?
Why do I find myself constantly bringing up reasons to assosciate all things with Hodgkin’s? My wife, the oncologist, the radiation oncologist, staff, and family all have such assurance that this is the end. I hope and try to do the same as well, but always a small seed of doubt inside. I pray that I am absolutely crazy in my thoughts and the majority is correct.
One more day left! How exciting? My marriage has been built on this ordeal. Married life for me was making sure my wife was taken care of, making sure she didn’t get neutropenic, that there were no germs on countertops. I took her temperature, watched her go through chemotherapy, and made her lousy tasting soup. That is what has bonded the two of us. I wonder what will be the next adhesive in our lives.
Hodgkin’s lymphoma is forever a part of us. I am not ever going to able to put this in the past. Everyday I will be worried about remission, everyday I will be worried about if Jackie is feeling ok. It is going to linger in me forever. I can already feel its ramifications lately. I am worrying if Jackie and I are going to be able to move out of our current neighborhood because she has her oncologists and history here. I worry that the clean scan she is receiving is “truly” clean. Are all these thoughts normal? Am I being obsessed with Hodgkin’s?
Why do I find myself constantly bringing up reasons to assosciate all things with Hodgkin’s? My wife, the oncologist, the radiation oncologist, staff, and family all have such assurance that this is the end. I hope and try to do the same as well, but always a small seed of doubt inside. I pray that I am absolutely crazy in my thoughts and the majority is correct.
Tuesday, May 11, 2010
Day 175-179
A quarter shy of 200 days and we can finally see the finish line. One last week of radiation and then what? For the past half year we have revolved our lives around Hodgkin’s Lymphoma. Every move we made whether it was to go out for the weekend or plan where we would settle and start a family has been based around Hodgkin’s. We have carried this weight of Hodgkin’s around us it has become ingrained into our thought process. We have rearranged our priorities so that Jackie’s health is numero uno in our family. Now that it is coming to a close how will life persist? Will Jackie and I be able to really put Hodgkin’s behind us? Life has definitely changed. My wife and I have gone through our first disaster together. Our next step is to celebrate life and start a family. How much different will this new life be though? Even the doctor told Jackie that every bump, itch, and mark on her body will heighten her senstivity. I would hate for Jackie to live in fear that Hodgkin’s will return. I can’t even imagine what would happen if it did. I am just trying to embrace the thought of being carefree and disease free.
The worse of it all has definitely subsided. Everyone reacts to cancer treatment differently. I have seen chemo being the worse and I have also seen radiation being bad. I have seen loved ones embrace their family member and offer unfathomable support and also read about couples splitting up over this. I have expected the worse at times and also watch the best. At times I have been extremely stressed and at the verge of losing sanity, but in the end I have stood right next to my wife. God has given me patience and Hodgkin’s has put it to the test.
Jackie’s hair is no longer falling out nor thinning. Her hair is getting thicker and she will plan to grow out her luxurious hair again. She suufers from a slightly irritated throat which hopefully will go away in a week. The future of side effects is yet to come, but at least we see that glorious finish lin.
A quarter shy of 200 days and we can finally see the finish line. One last week of radiation and then what? For the past half year we have revolved our lives around Hodgkin’s Lymphoma. Every move we made whether it was to go out for the weekend or plan where we would settle and start a family has been based around Hodgkin’s. We have carried this weight of Hodgkin’s around us it has become ingrained into our thought process. We have rearranged our priorities so that Jackie’s health is numero uno in our family. Now that it is coming to a close how will life persist? Will Jackie and I be able to really put Hodgkin’s behind us? Life has definitely changed. My wife and I have gone through our first disaster together. Our next step is to celebrate life and start a family. How much different will this new life be though? Even the doctor told Jackie that every bump, itch, and mark on her body will heighten her senstivity. I would hate for Jackie to live in fear that Hodgkin’s will return. I can’t even imagine what would happen if it did. I am just trying to embrace the thought of being carefree and disease free.
The worse of it all has definitely subsided. Everyone reacts to cancer treatment differently. I have seen chemo being the worse and I have also seen radiation being bad. I have seen loved ones embrace their family member and offer unfathomable support and also read about couples splitting up over this. I have expected the worse at times and also watch the best. At times I have been extremely stressed and at the verge of losing sanity, but in the end I have stood right next to my wife. God has given me patience and Hodgkin’s has put it to the test.
Jackie’s hair is no longer falling out nor thinning. Her hair is getting thicker and she will plan to grow out her luxurious hair again. She suufers from a slightly irritated throat which hopefully will go away in a week. The future of side effects is yet to come, but at least we see that glorious finish lin.
Thursday, May 6, 2010
Day 173-175
Radiation is definitely flying by. 6 more days of radiation and then we are all done. Jackie is so far doing very well, she does get the occasional throat pain and a little skin sensitivity around treatment area. Doctors said there is only a 5-10% chance that this would come back. Those are definitely great odds. We even talked about taking the port out. At first I was not willing to take the port out until everything was definitely in the clear. Jackie on the other hand wants the port gone. It is after all her body and tf respect her strength and endurance throughout this process. If she wants the port out I will be there for her. There is such a rush of celebration and anxiousness. I want to take her out to celebrate. I want to take her away from all this and leave Hodgkin’s behind us. She has fought the battle out. Even her hair is starting to grow back. I no longer wake up and find hair all over the place. Her physical strength is getting better as well. She is starting to hit the gym and doing more and more. I love the way she is and how she can endure through all these trials. For anyone out there who is going through a similar ordeal, there is a way and a light at the end of the tunnel. This is the ultimate marathon with many unpredictable obstacles, but what doesn’t kill you makes you stronger. Hang in there and be strong for each other. The end is near and the future is bright!
Radiation is definitely flying by. 6 more days of radiation and then we are all done. Jackie is so far doing very well, she does get the occasional throat pain and a little skin sensitivity around treatment area. Doctors said there is only a 5-10% chance that this would come back. Those are definitely great odds. We even talked about taking the port out. At first I was not willing to take the port out until everything was definitely in the clear. Jackie on the other hand wants the port gone. It is after all her body and tf respect her strength and endurance throughout this process. If she wants the port out I will be there for her. There is such a rush of celebration and anxiousness. I want to take her out to celebrate. I want to take her away from all this and leave Hodgkin’s behind us. She has fought the battle out. Even her hair is starting to grow back. I no longer wake up and find hair all over the place. Her physical strength is getting better as well. She is starting to hit the gym and doing more and more. I love the way she is and how she can endure through all these trials. For anyone out there who is going through a similar ordeal, there is a way and a light at the end of the tunnel. This is the ultimate marathon with many unpredictable obstacles, but what doesn’t kill you makes you stronger. Hang in there and be strong for each other. The end is near and the future is bright!
Monday, May 3, 2010
Day 169-172
Happy one year anniversary Jackie. The first year of marriage is when you are madly in love, honeymoon phase, full of awe for your spouse. You spouse is your life and you don’t want to spend a single minute apart. Going out on lavish vacation to exotic islands, decorating the house together, and maybe even getting a dog. None of that was found in my marriage. Our first year was a trial. It was a test of patience, love, and sanity. Thinking back a year ago it seemed like the perfect scenario. Two newly graduated doctors with full time jobs decide to join paths. Moving in together and saving tons of money to buy a house they can call home. It was great that we had each other 24/7, we enjoyed all the best restaurants and could take mini trips anytime we wanted. In a blink of an eye, the world changed. One small bump on the neck, no insurance, and a series of diagnostic tests which exposes itself as cancer. I still remember that night Jackie told me. We spent an many hours of our fairy tale life trying to help a church member find her lost child. How heroic it seemed, with me totally oblivious to Jackie’s condition. After the child was finally found we drove home. Jackie decided to tell me while driving. I guess she thought I was strong enough to handle the news and I apparently was able to trick myself into thinking the same. However, deep down inside everything collapsed. I was in a wreck the next 2 months. One minute I was completely stressed out thinking I need pyschological help and the other minute I was in denial. Our perfect marriage was totally blown up I thought. Life does show remarkable enlightement. The calmest one was also the victim. She was the one who put a new perspective on me. Life is the present and real. Fairy tales belong in movies.
Six months later, here we are. One year of marriage. We are still madly in love. We are about to conquer this feat of cancer. I have grown in this marriage and self edification ridiculously. I can’t fathom how this experience has changed me. A year of marriage seems like a decade of life lessons. I learned how to be a husband, a caregiver, a friend, a doctor, a coworker, a son, a listener, and most of all a better person.
Happy one year anniversary Jackie. The first year of marriage is when you are madly in love, honeymoon phase, full of awe for your spouse. You spouse is your life and you don’t want to spend a single minute apart. Going out on lavish vacation to exotic islands, decorating the house together, and maybe even getting a dog. None of that was found in my marriage. Our first year was a trial. It was a test of patience, love, and sanity. Thinking back a year ago it seemed like the perfect scenario. Two newly graduated doctors with full time jobs decide to join paths. Moving in together and saving tons of money to buy a house they can call home. It was great that we had each other 24/7, we enjoyed all the best restaurants and could take mini trips anytime we wanted. In a blink of an eye, the world changed. One small bump on the neck, no insurance, and a series of diagnostic tests which exposes itself as cancer. I still remember that night Jackie told me. We spent an many hours of our fairy tale life trying to help a church member find her lost child. How heroic it seemed, with me totally oblivious to Jackie’s condition. After the child was finally found we drove home. Jackie decided to tell me while driving. I guess she thought I was strong enough to handle the news and I apparently was able to trick myself into thinking the same. However, deep down inside everything collapsed. I was in a wreck the next 2 months. One minute I was completely stressed out thinking I need pyschological help and the other minute I was in denial. Our perfect marriage was totally blown up I thought. Life does show remarkable enlightement. The calmest one was also the victim. She was the one who put a new perspective on me. Life is the present and real. Fairy tales belong in movies.
Six months later, here we are. One year of marriage. We are still madly in love. We are about to conquer this feat of cancer. I have grown in this marriage and self edification ridiculously. I can’t fathom how this experience has changed me. A year of marriage seems like a decade of life lessons. I learned how to be a husband, a caregiver, a friend, a doctor, a coworker, a son, a listener, and most of all a better person.
Thursday, April 29, 2010
Day 167-168
7 days of radiation have gone by. The 7th day should be one of rest. Jackie seems to be having slight throat issues and fatigue. She doesn’t want to admit it, but I know she is tired. Sometimes I wish she would just let me do things and not be so stubborn about what she is feeling. We having been talking a lot about weddings and prenuptual agreements recently. The subject comes up because this weekend is our first wedding anniversary, and a few of our friends are getting married. In the beginning I was expecting to become the breadwinner, the cook, cleaner, and entertainment. However, now she has become the cook, cleaner, and working a job. There is no fair solution in a marriage. There is no insurance policy when you dive into a relationship. There is only commitment and love. If I knew that Jackie was going to have Hodgkin’s lymphoma six months into our marriage, would I have signed up? Life is unpredicatable and marriage is full of challenges. If I was going to protect myself before even getting married with a prenuptual then I might as well have taken out the portion of my vows in sickness or in health. A prenuptual is just a foothold to a failed marriage.
7 days of radiation have gone by. The 7th day should be one of rest. Jackie seems to be having slight throat issues and fatigue. She doesn’t want to admit it, but I know she is tired. Sometimes I wish she would just let me do things and not be so stubborn about what she is feeling. We having been talking a lot about weddings and prenuptual agreements recently. The subject comes up because this weekend is our first wedding anniversary, and a few of our friends are getting married. In the beginning I was expecting to become the breadwinner, the cook, cleaner, and entertainment. However, now she has become the cook, cleaner, and working a job. There is no fair solution in a marriage. There is no insurance policy when you dive into a relationship. There is only commitment and love. If I knew that Jackie was going to have Hodgkin’s lymphoma six months into our marriage, would I have signed up? Life is unpredicatable and marriage is full of challenges. If I was going to protect myself before even getting married with a prenuptual then I might as well have taken out the portion of my vows in sickness or in health. A prenuptual is just a foothold to a failed marriage.
Tuesday, April 27, 2010
Day 165-166
Jackie is going through radiation very smoothly so far. We keep reiterating to the oncologist that studies have shown treatment to be between 30Gy to 36Gy. I guess our understanding of radiation is a lot more simplistic than her knowledge. She says that difference between 30 and 36 is basically nothing. She recommends the higher dosage to insure that this disease is zapped once and for all. She says that only minimal damage is to the lungs and most will be to the thyroid. It has been 5 treatments so far and Jackie has not noticed much. She says there is a mild feeling in her throat, but I think I have more of a sore throat than she does at this very moment. She has to wear this two stickers on her chest for the remainder of her treatment so that technicians know the correct way of alignment. Warm weather is definitely setting in fast so we are trying to develop new strategies to conceal the stickers.
Jackie is going through radiation very smoothly so far. We keep reiterating to the oncologist that studies have shown treatment to be between 30Gy to 36Gy. I guess our understanding of radiation is a lot more simplistic than her knowledge. She says that difference between 30 and 36 is basically nothing. She recommends the higher dosage to insure that this disease is zapped once and for all. She says that only minimal damage is to the lungs and most will be to the thyroid. It has been 5 treatments so far and Jackie has not noticed much. She says there is a mild feeling in her throat, but I think I have more of a sore throat than she does at this very moment. She has to wear this two stickers on her chest for the remainder of her treatment so that technicians know the correct way of alignment. Warm weather is definitely setting in fast so we are trying to develop new strategies to conceal the stickers.
Sunday, April 25, 2010
Day 162-164
Solidarity is definitely tough. My life is no longer the single bachelor life. Jackie and I spent the weekend apart due to a schedule conflict. She went back home for the weekend and I went to visit my sister and friends. At first I actually had some anxiety because Jackie and I haven’t been apart for a weekend since we got married. For the last few months I felt cancer has stolen part of my marriage. My honeymoon period seemed to only have lasted up to the point when Jackie was diagnosed. We had to skip the greatest part of the beginning stage in marriage due to Hodgkin’s Lymphoma. No longer could we come home and just be “lovey dovey” but we had to be grown up and mature about treatments, bills, and even the future. I was afraid for this weekend that I would not have the feelings of missing Jackie the way I use to. I was afraid that this weekend would be a piece of cake. I was afraid that Jackie and I would be so complacent with being apart that it would become habit forming. When does that honeymoon period end and does it ever come back?
All my worries ended up premature. The weekend was great. We were both able to spend time with family and friends. We ended up talking on the phone and sharing about the our days’ events every night. I actually felt very loved and close to Jackie while she was away. I knew that she was constantly thinking of me and everything she does represented us as a couple. A strong relationship cannot be separated by distance. The distance only made the end of the weekend something to look forward to. We both came home in the afternoon early. It was so great to see my wife and she never looked so beautiful. I hugged and kissed her. We had a great dinner and definitely ready for next week. Next week is our one year anniversary. We made it this far and I can definitely say the honeymoon period is not over. I proved it to myself this weekend!
Solidarity is definitely tough. My life is no longer the single bachelor life. Jackie and I spent the weekend apart due to a schedule conflict. She went back home for the weekend and I went to visit my sister and friends. At first I actually had some anxiety because Jackie and I haven’t been apart for a weekend since we got married. For the last few months I felt cancer has stolen part of my marriage. My honeymoon period seemed to only have lasted up to the point when Jackie was diagnosed. We had to skip the greatest part of the beginning stage in marriage due to Hodgkin’s Lymphoma. No longer could we come home and just be “lovey dovey” but we had to be grown up and mature about treatments, bills, and even the future. I was afraid for this weekend that I would not have the feelings of missing Jackie the way I use to. I was afraid that this weekend would be a piece of cake. I was afraid that Jackie and I would be so complacent with being apart that it would become habit forming. When does that honeymoon period end and does it ever come back?
All my worries ended up premature. The weekend was great. We were both able to spend time with family and friends. We ended up talking on the phone and sharing about the our days’ events every night. I actually felt very loved and close to Jackie while she was away. I knew that she was constantly thinking of me and everything she does represented us as a couple. A strong relationship cannot be separated by distance. The distance only made the end of the weekend something to look forward to. We both came home in the afternoon early. It was so great to see my wife and she never looked so beautiful. I hugged and kissed her. We had a great dinner and definitely ready for next week. Next week is our one year anniversary. We made it this far and I can definitely say the honeymoon period is not over. I proved it to myself this weekend!
Thursday, April 22, 2010
The first two days of radiation seemed very easy, painless, and fast. Jackie was marked up the first day and then led into her chambers to be radiated. It seems to me that radiation takes very careful planning and patience. It is like an amusement park ride where you wait an hour for in line and then the ride ends in thirty seconds. The radiation procedure is thirty seconds in the front and thirty seconds in the back. The other fifteen minutes were meant for aligning and prepping. So two down and sixteen more to go. Jackie is feeling very restless spending most days at home. She has not worked a full week since November. People usually despise going to work everyday but then we miss what we cannot have. She wants to go back to work. Luckily, Jackie is almost done and she can do everything she wants.
Tuesday, April 20, 2010
Radiation begins tomorrow promptly after lunch. I have lots of mixed feelings about the whole process. I know that this is going to give a 95% insurance policy for cure. I know that Jackie has only two small areas to radiate. Her doctor and staff is very knowledgeable with the most advaced equipment out there. Jackie is getting a low dose of radiation for a very limited amount of time. I want to believe I am care free, but how is that possible with such an invasive procedure. The radiation oncologist said no breast tissue will be harmed, a slight nicking of lung tissue, and the thyroid will be affected. Scientifically speaking that is a very good prognosis, but as a husband I beg to differ. My wife is only 27 years of age, 1 year into marriage, and has plenty of life to enjoy. Its so sad to think that she may be on thyroid medication later on in the future. I just pray that God watches over the rest of her body. I pray that the radiation be straight and direct and calculations are exact. For the next 3.5 weeks she will be starting her morning in a patient’s gown on top of a huge radioactive machine that will be cold and claustrophobic. She definitely deserves a nice vacation after this. The body is your temple until cancer sets in.
Sunday, April 18, 2010
Day 154-156
Fun in the sun. Jackie had two weeks of no therapy, treatment, side effects, etc. Her body is gaining strength and she does not get tired as easily. She has no restrictions to what she eats or drinks. We are able to go anywhere we want without worrying about neutropenia or excessive germ alert. She seems a lot more happier these last two weeks compared to the last two months. Chemotherapy seems to wear down one’s body overtime. It is a endurance test. The first few rounds are a breeze. The event is fresh, your body is strong, and it can fight. The last rounds are when your energy is being sucked out of you. You become lackluster, side effects multiply, and you feel beat. Jackie did four rounds of ABVD but others do anywhere between 4-6 rounds. It is anywhere from half a year to a year of marathon abuse.
This weekend we were either going to san diego to visit family and friends or go enjoy Joshua Tree national park. It feels so good to be able to do anything we want. Anyways, we ended up going to Joshua Tree out in the Mojave desert. Who knew that there would be such a large park in the middle of nowhere. At different points of the park you could see the San Andreas fault line all the way to the Colorados. There were so many different varieties of nature. Every part of the park contained a certain type of plant life. We saw all different plants such as the Joshua Trees, Ocotillo, and the Cholla cactuses. There were different boulder and rock formations shaped like skulls, jumbo rocks, caves, and caverns. It was amazing how clean the air was and how nature designs its own architecture. We took lots of pictures and had plenty of great exercise. At the very end we had a satisfying dinner and a few hours of resting out bodies from a day’s event.
Fun in the sun. Jackie had two weeks of no therapy, treatment, side effects, etc. Her body is gaining strength and she does not get tired as easily. She has no restrictions to what she eats or drinks. We are able to go anywhere we want without worrying about neutropenia or excessive germ alert. She seems a lot more happier these last two weeks compared to the last two months. Chemotherapy seems to wear down one’s body overtime. It is a endurance test. The first few rounds are a breeze. The event is fresh, your body is strong, and it can fight. The last rounds are when your energy is being sucked out of you. You become lackluster, side effects multiply, and you feel beat. Jackie did four rounds of ABVD but others do anywhere between 4-6 rounds. It is anywhere from half a year to a year of marathon abuse.
This weekend we were either going to san diego to visit family and friends or go enjoy Joshua Tree national park. It feels so good to be able to do anything we want. Anyways, we ended up going to Joshua Tree out in the Mojave desert. Who knew that there would be such a large park in the middle of nowhere. At different points of the park you could see the San Andreas fault line all the way to the Colorados. There were so many different varieties of nature. Every part of the park contained a certain type of plant life. We saw all different plants such as the Joshua Trees, Ocotillo, and the Cholla cactuses. There were different boulder and rock formations shaped like skulls, jumbo rocks, caves, and caverns. It was amazing how clean the air was and how nature designs its own architecture. We took lots of pictures and had plenty of great exercise. At the very end we had a satisfying dinner and a few hours of resting out bodies from a day’s event.
Wednesday, April 14, 2010
Day 153
I am constantly being misled by forums and testimonies from others. I was taught as someone in the health field to always study evidence based medicine. Studies are only significant when the study is over a long a period of time, a significant amount of subjects, and a control and trial group. With our recent good news about her mass shrinkage and radiation treatment. Jackie’s current treatment is going to be 36Gy (1Gy=100rads) over 18 days totaling 3600 rads. Of course, my personality always tries to find the wrong in every situation. I started reading other peoples' forums saying they had 2100 rads, 2600 rads, and 3000 rads. I started thinking why is Jackie receiving so much radiation and the specialist did not know what she was calculating. I thought my limited knowledge of radiation oncology would triumph her 16 years of experience. The forums consist of an international group of subjects with many different ages and staging of Hodgkin’s disease.
After a whole night of research with Jackie I did stumble on some reliable evidence based medicine studies. The first one came from Germany and stated that patients who had 2000 rads and 3000 rads all had very high prognosis rates. This study made me fall into more of a self validity. Then I found the U.S guidelines for treament of stage 2a Hodgkin’s. I found out that 4 cycles of ABVD and 3000-3600 rads were the best combined modality for treatment. Going to 3600 rads just insured beating this disease.
Reading forums are an addiction. Each posting is subjective, opinionated, and a non professional opinion. Everyone has very informative information that has to be taken with a grain of salt. Nothing beats the opinion of a specialist who has been trained to deal with disease. When in doubt go for a second opinion by another professional.
I am constantly being misled by forums and testimonies from others. I was taught as someone in the health field to always study evidence based medicine. Studies are only significant when the study is over a long a period of time, a significant amount of subjects, and a control and trial group. With our recent good news about her mass shrinkage and radiation treatment. Jackie’s current treatment is going to be 36Gy (1Gy=100rads) over 18 days totaling 3600 rads. Of course, my personality always tries to find the wrong in every situation. I started reading other peoples' forums saying they had 2100 rads, 2600 rads, and 3000 rads. I started thinking why is Jackie receiving so much radiation and the specialist did not know what she was calculating. I thought my limited knowledge of radiation oncology would triumph her 16 years of experience. The forums consist of an international group of subjects with many different ages and staging of Hodgkin’s disease.
After a whole night of research with Jackie I did stumble on some reliable evidence based medicine studies. The first one came from Germany and stated that patients who had 2000 rads and 3000 rads all had very high prognosis rates. This study made me fall into more of a self validity. Then I found the U.S guidelines for treament of stage 2a Hodgkin’s. I found out that 4 cycles of ABVD and 3000-3600 rads were the best combined modality for treatment. Going to 3600 rads just insured beating this disease.
Reading forums are an addiction. Each posting is subjective, opinionated, and a non professional opinion. Everyone has very informative information that has to be taken with a grain of salt. Nothing beats the opinion of a specialist who has been trained to deal with disease. When in doubt go for a second opinion by another professional.
Subscribe to:
Posts (Atom)