Now the ride really starts

twiceblessed
twiceblessed Member Posts: 13
in Caregivers #1
Hello everyone. This past Tuesday (the 16th) I got home from work and found my husband in respiratory distress. He had been having mild difficulties breathing, but that night was the worst. It terrified both of us so much so that I ended up calling the ambulance for him. It took 10 minutes for the EMT's to stabilize him enough for transport to the hospital. To cut a long story short, it was found that John's left lung was completely surrounded by fluid. So off we went for them to drain it. 2700+ mL of fluid was drained off and he started feeling much better. Then he started filling up again, so they put in a PleurX cath so that he can be drained without having to constantly be "plugged in". Slowly the amount of fluid decreased so they finally discharged him on Saturday afternoon. He has been doing really good and each day the fluid gets less and less. Today we went back to the Oncologist for a drain check and a chest Xray. On that front things are looking good. The colonoscopy and endoscopy that were done in the hospital came back clear and yesterdays PET Scan showed that the cancer is in all of his lymph nodes, but did not show any tumors in his lungs, brain, kidneys etc. Then we got the news. John starts Chemo on Tuesday. They will be using Cisplatin and Taxol--atleast until the rest of the Pathology results come back. Hopefully one of those tests will tell us his primary source so that they can use a more type specific chemo. If not we will continue this route. We continue to talk every day about our new normal and we continue staying strong and supportive of each other. And while I do have the hope that John will be the rare one to go into remission for what his Oncologist calls a rare type of cancer for his age group, I am also a realist. I know that the likelyhood of my husband recovering from this stage of this type of cancer is low. But I will continue to enjoy and love every second that I have with my wonderful husband.

Comments

  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #2
    Hang in there
    The ride will also probably be the biggest roller coaster you have ever ridden. It's hard to hang on sometimes, but you sound like you have found some peace. I know I always felt better when we had a plan. Hope doesn't mean the absence of reality. Take things a day at a time. During my husband's six year battle we learned to expect the bad days and rejoice in the good. Remember that someone has to beat the odds. Why not your husband? My husband knew that he was probably just buying time and did beat the odds. The average survival with his form and stage was 22 months. He made it for 6 years. Every day your husband buys is another day together, and another day for some new treatment to come down the pipeline. Cherish those days. Hope for the miracle and just keep on keeping on. Good thoughts coming your way. Fay
  • twiceblessed
    twiceblessed Member Posts: 13
    #3
    grandmafay said:

    Hang in there
    The ride will also probably be the biggest roller coaster you have ever ridden. It's hard to hang on sometimes, but you sound like you have found some peace. I know I always felt better when we had a plan. Hope doesn't mean the absence of reality. Take things a day at a time. During my husband's six year battle we learned to expect the bad days and rejoice in the good. Remember that someone has to beat the odds. Why not your husband? My husband knew that he was probably just buying time and did beat the odds. The average survival with his form and stage was 22 months. He made it for 6 years. Every day your husband buys is another day together, and another day for some new treatment to come down the pipeline. Cherish those days. Hope for the miracle and just keep on keeping on. Good thoughts coming your way. Fay

    Thanks grandmafay. Your
    Thanks grandmafay. Your encouragement helps. I was told the other day that I am strong. I don't feel it. I am a quivering mass of fear and anxiety just trying to make it through the day. Unfortunately the fluid has increased around Johns lung again. It had dropped down to only draining off 150mL a day to back up to 450+mL at a drain now. It is what it is though. We keep soldiering on and hope for the best while preparing for the worst.
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #4
    twiceblessed said:

    Thanks grandmafay. Your
    Thanks grandmafay. Your encouragement helps. I was told the other day that I am strong. I don't feel it. I am a quivering mass of fear and anxiety just trying to make it through the day. Unfortunately the fluid has increased around Johns lung again. It had dropped down to only draining off 150mL a day to back up to 450+mL at a drain now. It is what it is though. We keep soldiering on and hope for the best while preparing for the worst.

    Strong? I know where you are coming from
    I have been hearing how strong I am as well. I am a mess. I got married in May, my husband's dad died a week later. In July we found out he has Stage IV oropharyngeal cancer. He has had a cancerous lymph node 4.5 cm removed from his neck and the primary was found at the Base of Tongue, which he had removed in September. On Friday at 3 am I had him at the ER and found out he had humoral hypercalcemia of malignancy. Basically high calcium levels due to his cancer. After I figured out what it was and did some research. I am now looking at what they initially told me was 95% chance of cure, down to 20% chance of surviving a year. 50% die within 30 days and 75% within 3 months. I don't want to be a widow. I don't want everyone to know that I worry that David will die on me, but I do worry. I believe in God, but I don't know it is in God's hands to save my husband. I hope so and a lot of people are praying, but I look at him lying in the hospital bed and it breaks my heart. They told us today that they have to delay chemo and radiation, because he is too weak to go through it. I am sorry for unloading, but I didn't want to write this on the head and neck site, because the people there are eternal optimists (which I do admire), and would tell me not to worry. That makes me feel guilty that I do worry so much.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #5
    VivianLee5689 said:

    Strong? I know where you are coming from
    I have been hearing how strong I am as well. I am a mess. I got married in May, my husband's dad died a week later. In July we found out he has Stage IV oropharyngeal cancer. He has had a cancerous lymph node 4.5 cm removed from his neck and the primary was found at the Base of Tongue, which he had removed in September. On Friday at 3 am I had him at the ER and found out he had humoral hypercalcemia of malignancy. Basically high calcium levels due to his cancer. After I figured out what it was and did some research. I am now looking at what they initially told me was 95% chance of cure, down to 20% chance of surviving a year. 50% die within 30 days and 75% within 3 months. I don't want to be a widow. I don't want everyone to know that I worry that David will die on me, but I do worry. I believe in God, but I don't know it is in God's hands to save my husband. I hope so and a lot of people are praying, but I look at him lying in the hospital bed and it breaks my heart. They told us today that they have to delay chemo and radiation, because he is too weak to go through it. I am sorry for unloading, but I didn't want to write this on the head and neck site, because the people there are eternal optimists (which I do admire), and would tell me not to worry. That makes me feel guilty that I do worry so much.

    Worry
    Of course you worry! You worry all the time. Your greatest fear is losing the most important person in the world to you. It's scary. Remember, though, none of us has an expiration date. The stats are an average and each person is an individual. The literature said the stats for my husband's type and stage of cancer the survival time was 22 months. He made it for 6 years. Try not to think to much ahead of yourself. I know, not easy. Take each day, hour, or minute at a time. Cherish each moment you have together now. I'm sorry you are facing this so early in your marriage. There is no good time though. I'm sending prayers and good wishes your way. Hugs, Fay
  • here4lfe
    here4lfe Member Posts: 306 Member
    #6
    VivianLee5689 said:

    Strong? I know where you are coming from
    I have been hearing how strong I am as well. I am a mess. I got married in May, my husband's dad died a week later. In July we found out he has Stage IV oropharyngeal cancer. He has had a cancerous lymph node 4.5 cm removed from his neck and the primary was found at the Base of Tongue, which he had removed in September. On Friday at 3 am I had him at the ER and found out he had humoral hypercalcemia of malignancy. Basically high calcium levels due to his cancer. After I figured out what it was and did some research. I am now looking at what they initially told me was 95% chance of cure, down to 20% chance of surviving a year. 50% die within 30 days and 75% within 3 months. I don't want to be a widow. I don't want everyone to know that I worry that David will die on me, but I do worry. I believe in God, but I don't know it is in God's hands to save my husband. I hope so and a lot of people are praying, but I look at him lying in the hospital bed and it breaks my heart. They told us today that they have to delay chemo and radiation, because he is too weak to go through it. I am sorry for unloading, but I didn't want to write this on the head and neck site, because the people there are eternal optimists (which I do admire), and would tell me not to worry. That makes me feel guilty that I do worry so much.

    You have double duty
    You support your husband, but at the same time take care of yourself. Knowing the statistics grounded me in realism, but it also made me focus on sharing with my wife every day.
    Worry all you want. He needs you to make good decisions on his behalf. You can do it.

    Best.
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #7
    here4lfe said:

    You have double duty
    You support your husband, but at the same time take care of yourself. Knowing the statistics grounded me in realism, but it also made me focus on sharing with my wife every day.
    Worry all you want. He needs you to make good decisions on his behalf. You can do it.

    Best.

    Thanks for the support
    Thank you for your support. I really needed to vent because it was really building up in my mind. My sleep has become almost nonexistent and my blood pressure has been high. I feel a little better today and I know that my husband needs me here for love, support and encouragement and that's what I will be.

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