Marisa's Journey with Lung Cancer

Caregiver: Lung Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Male, Age: 63

  1. 1
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Weight loss

    Side Effects

    My best friend and companion has been sick for three years. he has seen many doctors - gastroenterologist, neurologist, internist, rheumatologist - all misdiagnosed his illness or were completely stumped. He started out at 200 lbs and lost 60 lbs the first year. He's down to 118 now - so painfully thin and frail.

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  2. 2
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Constipation

    Side Effects

    Excruciating constipation for the last few years. Daily enemas were the only solution. We didn't know that this was a common side effect of lung cancer (other cancers too?)

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  3. 3
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Eating problems (anorexia)

    Side Effects

    He's been just too tired to eat. His body is starving, but eating was just too hard. Finding foods that he could swallow was a daily discussion.

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  4. 4
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Fatigue (tiredness)

    Side Effects

    Getting from the bed to the bathroom took a lot of planning - he has been exhausted every day for the last three years. He's the bravest man I've ever met.

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  5. 5
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Jaw bone damage (osteonecrosis)

    Side Effects

    He has only one tooth left. This makes eating - chewing and swallowing - that much harder. Why is the jaw bone so vulnerable? He has been on pilocarpine to produce saliva, but he lost his teeth anyway.

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  6. 6
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Low blood pressure (hypotension)

    Side Effects

    His normal blood pressure was 70 / 40. He has been blacking out for years from low blood pressure. IV fluids and oxygen helped get his blood pressure up to normal.

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  7. 7
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Incontinence (cannot control urine)

    Side Effects

    He started losing bladder control during the first year of his undiagnosed illness (now in year 4). We thought it must be some kind of urinary disorder.

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  8. 8
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Diagnosed

    Oh No

    After three years of losing weight (200lbs down to 118), excruciating constipation, no saliva, no appetite, and blacking out from low blood pressure, my friend was diagnosed with stage 4 lung cancer with metz to spine and hips. We were stunned. Paralyzed in disbelief. We've moved on to relief at finally having a diagnosis even though it was very bad news.

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  9. 9
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    External radiation

    Radiation

    He is receiving daily radiation treatment to his spine to reduce the swelling and compression on his nerves. His skin is very dry now, he has some rashes and sores from the treatment. We're making progress though. He lost more weight during the treatment.

    Painless Experience: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  10. 10
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Other

    Decision Point

    He has two more days of radiation scheduled for next week. The oncologist is talking about chemo in the future, but maybe not right away. I think he is too weak and can't handle the chemo. He is frail and having trouble eating. Won't chemo make him even sicker? Should he "recover" a bit from the radiation? Should we wait for his appetite to come back a bit before knocking it out again with chemo? We'll have to decide by the end of next week.

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  11. 11
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Mouth sores

    Side Effects

    Art has developed a very painful case of thrush on his tongue and inside his cheeks - most likely from the inhaled corticosteroids (Advair). It is probably down his throat too since he can barely talk. We got nystatin rinse last night and started using it. No help yet - it must take a couple of days. Radiation treatment this morning - only three more left! It's a long hard drive into Chicago every morning, but the radiation seems to be shrinking the tumors on his spine.

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  12. 12
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Mouth sores

    Side Effects

    Terrible mouth pain won't respond to morphine. His mouth and throat are in flames from the radiation - we thought it was from the thrush infection. Art was admitted to the hospital again yesterday. I wish the doctors to alleviate the pain! Maybe we can get that under control today.

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  13. 13
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Weight loss

    Side Effects

    My friend seems to be getting closer to the end. He has cachexia - he has not eaten solid food in 6 weeks. Boost and Pedialyte give him some sustenance, but he is losing muscle and bone mass. He wants to eat and he is hungry at times, but he just can't force food down. He's getting more and more confused, so I'm trying to simplify his life as much as he will allow. Simple things like wetting his hair and combing it back off his face make him feel better. Please pray for my friend that his suffering is eased.

    2 Comments
  14. 14
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Hospice

    Other Care

    Art is so weak. We have two services coming in the house now - a hospice nurse and also a "comfort care" nurse who can help with hygiene and medication. This was such a difficult decision, since Art did not want anyone else in the house except me and his attorney/friend. We went against his wishes and had the services brought in to help. When Art says no, we wouldn't fight with him - we'd do what he wanted even though it caused him more pain and discomfort. Bringing in professionals was the best decision! Now that they are part of the process, he is allowing them to do things - like assisting with toileting - that I was not doing very well!

    2 Comments
  15. 15
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Pain medicine

    Drug or Chemo Therapy

    Art is now getting fentanyl patches (72 hour patch) that really helps with pain management. 100 mg extended release morphine three times a day, liquid morphine as needed, and this fentanyl patch. He has very few lucid moments, but at least his pain is under control. As a caretaker, it was excruciating to see him suffer with such awful pain. Pain relief is so important to quality of life.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  16. 16
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Weight loss

    Side Effects

    Art continues to lose weight. Down to 106. He still has an appetite, though, and manages to get a few bites down here and there. Boost and pedialyte help with nutrition.

    2 Comments
  17. 17
    • Marisa
    • Experience with Lung Cancer
    almost 5 years ago
    Marisa's Avatar

    Memory changes

    Side Effects

    I know we're getting to the end of Art's life. He can no longer get up - he is on the floor since he kept falling off the bed anyway. We all decided (he agreed) to keep him on the floor on a rubber mat for comfort. The hospice nurse says he only has 2 to 3 weeks left before his body organs will begin to shut down. Art has finally admitted that this cancer might beat him. I am strangely at peace with this process - I hope it is ok to say why. The sicker and weaker Art becomes, the more his life is getting close to death. Life and death are going to be a seamless process. Death is no longer feared by either one of us. We know it is almost upon us. He will not be in much pain. He will just be weak. He will not be alone either, and neither will I. This death is hard and prolonged, but it is Art's very unique death as was his life. He was totally in charge of every aspect of his life. I know he will be controlling as much of his own death as possible. It will be him saying ok when it's time to go, and death won't come until he allows it to take him. I ask you all for your strength and understanding as we go through this process. I don't want to be all alone after he is gone. Can you all be with me (maybe in spirit)?

    2 Comments
  18. 18
    • Marisa
    • Experience with Lung Cancer
    over 4 years ago
    Marisa's Avatar

    Low blood pressure (hypotension)

    Side Effects

    We've been riding a roller coaster for the past few weeks. Art was almost gone two weeks ago, but then out of nowhere, he perked up. It almost seemed like all the energy that was being used by his whole body was being diverted to his brain and his heart to bring him alive and aware again. He's been doing very well for these past two weeks, but today I can see that he has again taken a turn for the worst. Blood Pressure is back down to 50/30 and he's falling asleep more often and very weak. He is absolutely skin and bones, but he has the will to keep fighting. The roller coaster ride with him is truly exhausting as a caregiver - I pray for the strength to meet his needs.

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  19. 19
    • Marisa
    • Experience with Lung Cancer
    over 4 years ago
    Marisa's Avatar

    Lost loved one

    Loss

    To all of you who have support us in our struggle against lung cancer, I am so sad to tell you that Art died on Memorial Day, May 28th, 2012. He fought to the very end and always hoped and prayed for a miracle. He woke up briefly on Saturday and told me something was very different and that he was at a decision point. He knew that there was someplace he needed to go, but he wasn't sure where to go. He faded in and out until he took his last quiet breath. Thank you all for listening to our daily struggle over these last few months. I have brought back many encouraging words of support, hope and advice to Art from many of you. He packed more living in his life than anyone I ever met. Bless you all in your own trials.

    3 Comments