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.

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 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…

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?

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.

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!

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.