webbsurvivor's Journey with Non-Hodgkin Lymphoma (NHL)

Lost Loved One: Non-Hodgkin Lymphoma (NHL)

Patient Info: Prefer not to answer/not applicable/unsure, Diagnosed: about 8 years ago, Male, Stage III

  1. 1
    over 4 years ago
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    Its CANCER

    Oh No

    my husband had been experiencing back pain since nov 2008, but wrote it off to his heavy weightlifting and jogging schedule. He basicaly self diagnosed as pinched nerve and pulled muscle to his dr who gave pain killers and muscle relaxants He couldnt even sleep in bed anymore and spent his nights in the lazy boy. i forced him to ask for a catscan on MLK day 2009 as he was off work. he did it mostly to make me leave him alone. The catscan showed a large tumor on his spine with a runner into his kidney and stomache. We are devastated, he is the healthiest person around. No red meat, no drinking or smoking. Works out and jogs daily

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  2. 2
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    Having that little bottle capped port put in was a minor surgery but a major blow to our feeling of control. We knew cancer was now living in him and while it meant hope it was an ever present reminder that something evil that could manipulate our behavior had made its way into our lives

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    over 4 years ago
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    Pneumonia

    Side Effects

    right after his first round of chemo he developed pneumonia and had to be hospitalized. It was very odd occurence as they said it was the type common to AIDS victims not cancer. this was the first in many "oh no this isnt normal " events for us.

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  4. 4
    over 4 years ago
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    Heart problems/heart damage

    Side Effects

    After the second round of chemo he developed atrial fibrillation he had to be hospitalized so that they could "shock" his heart into resuming a normal beating pattern. He had been experiencing shortness of breath and dizziness attributed to this issue.

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  5. 5
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    He dd not lose all his hair his first rounds of chemo. the weakness was hard for him to take as he was so used to being strong and fit. he did not experience the nausea you hear about. He continued to work at his job and he was a machine repair person for GM. We were being told by many types of health persons and friends that many people live 15-20 years with large b cell lymphoma.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    over 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    The cancer did not respond to chemo. They even thought he might have kidney cancer and lymphoma at the same time. The tumor had wrapped itself around his left kidney and the decision was made to remove it. My husband decided he should take the early retirement from GM that was being offered so that he could fight harder. I think his pride was involved too as the cancer diminished in his ability to be able to do his job well. His kidney was removed in August 2009. I should have known that it did not go well as his dr did not meet my eyes and kept saying that he had to peel it off the muscle in his back. I did not know to ask if it had spread into the muscle. I thought they told you these things. but they dont want to be the one to have to give you the bad news, you have to ask, or they wont share. Of course this will not change your pursuing cancer with all you have. but it may keep you from being blind sided

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  7. 7
    almost 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    Christmas eve he started to have stomache discomfort. He refused to have me call his DR. Christmas day he was in major pain and hardly moved from his chair the whole day. Again refusing to contact the Dr. the day after Christmas he woke me very early and said "we need to go to the hospital" In the emergency room after running scans and dye xrays it was determined the cancer had gotten into his colon and a colostomy was performed. This would delay the stem cell transplant also 3 weeks for healing. Not to mention reeking havoc on his pride. He didnt want me to help with it or even see the bag. So you can guess what it did to our personal relationship

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  8. 8
    over 4 years ago
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    External radiation

    Radiation

    My husband started radiation. they fit you with a body moulding foam form on your first trip. So that you cant move during radiation and they can focus all the pulses directly in the tumor and not healthy tissue. when you lose weight, i think its 10 or more pounds they have to redo it so that they are still accurate. This burned his skin (like a sunburn) and made him loopy. he had a hard time concentrating and slept alot. we had to put special moisturizer on the area that dd not interfere with his radiation. he was able to even drive himself to the treatments (they last 15min) 3 times a week. He did not want me to go with him. I think he felt if he could still do things on his own that he was beating it. i did go a couple of times, because i needed to be reassured. He was the youngest person there and they all were like a little club, cheering each other on, in the most frightening race ever, where they could all hope to win

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  9. 9
    over 4 years ago
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    Radiation over, waiting for Catscan

    Oh No

    At the end of his radiation schedule, they refused to do a Catscan. When i got testy with them they said it wasnt useful as he couldnt have more chemo or radiation yet so why know? WHY? the same reason you look in the basement when you hear a sound. To KNOW whats threatening you and prepare for a fight. If nothing else make a plan of attack. So we waited amonth and a half. During this time I tried to convince him to do some of the things on his bucket list. He refused, saying he wanted to wait until he was better. A good day is a good day. Sick or not, do not wait for perfect, enjoy good enough. The Catscan showed the radiation did nothing. The main tumor was actually larger than when we first were diagnosed. Furious anger. His oncologist tells us in our visit that his only chance now is stem cell transplant We and all his records are sent to U of M. The DR there informs us that we must find a match (siblings best chance). So we are given kits for each of his brothers and sisters. We are also warned that insurance usually does not cover the search and testing, only treatment and we may need to cover $15-20,000 in costs. This is shocking. I finally get the courage to ask what his chances are and what stage he is in. The Dr says he is a 3 plus and only a 15% chance this will work. On the way to the car he lashes out and says he doesnt care if its only 2% chance and we have to sell our house to pay for it, he would do it. This is one of many angry outbursts that our family will endure. When i confide in my hair dresser how it is going, her co-worker tells me her husband who had cancer was just as bad. I was to find out that men become quite vicious during their treatment, but the family never says anything because, who can criticize a person with cancer? He was a real sweetheart to everyone else so how would we look saying these things? We didnt go to support groups, as he didnt believe in those types of public sharing, and I was working still and those meeting were during work hours.

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  10. 10
    almost 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Rescue chemo. 3d week of January. This is the chemo that kills everything so that they can start with a clean slate. The second day after chemo when i come home from work at 5:30 he says "I have a fever". Now his dr office is closed so i bundle hin off to the emergency room again. They draw blood and put us in a room. We are sitting chatting watching the TV and they come flying in dressed in the full hood, booties, overall infectious disease outfit and slap a "no admittance, bio hazard' sign on the door as they shut it behind them. My heart feels like ice, we know this is bad. We think he has caught something, but its not contagious, its that he has no white blood cells, no immuno response, and some type of raging infection. He is admitted and put in isolation. So starts 4 days of tests and Dr's avoiding giving us answers

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  11. 11
    almost 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    I am working half days during this time, going to hospital to be there when Drs say they will give us info, stop by etc. The morning of the 5th day i am at work my husband calls, he is panicked. It seems a Dr came into his room about 8am and turns on the light and says Mr so and so you realize there is nothing more we can do for you dont you? He answers "oh Ok" and the dr left. He sits there for a minute then calls me because he isnt sure what he means. Is it time to go home to resume chemo? Do we need to go to a specialist? Is there a surgery that needs to be done by say, Mayo instead? I am incensed. He is starting to lose it and I wasnt there for him, I tell my boss I have to go to the hospital immediately and bolt. By the time I get to his floor I am enraged that he was given information in this manner. They say someone will be in to speak to us. Three people come in. One a Dr, one an administrator, and one obviously a social worker. I start to cry. My husband does not grasp it yet. They start their vignette. It suddenly becomes clear to him. He turns pale and his eyes fill with tears. I am choking on sobs. They are very nervous. waiting for us to do something. What? panic, scream, throw ourselves at them? Its like holding a bomb you know is about to explode and there is nothing that can be done, so you grasp hands and wait for the boom. They draw pictures , explain, explain, explain. Offer solace, and finally leave. I lay beside him on the hospital bed. We dont talk. He finally says you need to go home to our kids and prepare them. I walk out feeling like I am drugged. On the way home I stop and throw up. I cant talk to my son that night, I havent even got it yet, i cant share yet. I cry in the shower to cover the sound. The next day saturday, i call my daughter to come over and I tell them Dad is terminal. My son crys, my daughter rages, We need other opinions, new tests, new treatment. She retreats to her salvation, the internet, to save her dad. I let her go.

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  12. 12
    almost 4 years ago
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    Palliative care

    Other Care

    When i return to the hospital i tell them that I need to have time to get ready,to get a will for him. They fight me. Once you are terminal you are just supposed to go lay down and die. I tell them, we are not prepared, we were promised remission. They agree to let me give him antibiotics, Avanta for 2 weeks to get our business taken care of. His diagnosis is 1-2 months.I learn to access his port, give him morphine under his tongue, track his doses. That walk through the hospital with an aide pushing his wheelchair, chatting happily to us, was a heartbreak. I never thought about people leaving the hospital without a cure but a death sentence, before that day. I take a family leave from my job. He rallies after coming home. We think "a miracle?" His oncologists says no, dont go there, its just the way it happens sometimes to give you time to tie up the ends. Within two days of her statement he starts the decline. We have a hospice nurse who comes twice a week at first. His pain escalates. The tumor grows out his back, weight drops off him. And then one night he cant swallow any pills, barely keeps any liquid morphine down. He starts throwing up what looks like coffee grounds. I am afraid I will kill him, I have given him so much morphine under his tongue. I finally call the hospice nurse at 6 am. she comes over and when we talk about the night she says the "coffee grounds" are blood. The cancer has taken his stomache. I cannot give him enough medication orally. She says we have to go into the hospital hospice for the amount of intraport pain meds he will need. He fights me on this, but she explains the pain will be getting worse now that he is close to passing. That shocks us both. We knew it would come but are still surprised. He relents, but wont allow an ambulance to come, still proud. I lift him into our van, pain written on his face, for my last trip in a car with him after 31 years. I am so aware of the company of him, the comfort of our years together.

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  13. 13
    almost 4 years ago
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    Lost loved one

    Loss

    He was only conscious and interactive for the first three days. He lived for 7 more days becoming less and less responsive. I slept in the recliner set up beside his bed and would hold his hand at night. I would squeeze his hand and he always squeezed back so I knew he knew i was there. The hospice nurse said he was close to death so I called his family and told them to come soon. Our children came that night but our son was in college and daughter working, they said they would be back the next day. The night before he died, I heard him start whispering. He had not spoken in 6 days so I was thrilled to hear him. I got up close to him and asked him what he was trying to tll me. He kept whispering but I couldnt understand him. I suddenly realized he was talking to someone, not me. He even chuckled at one point, and he would pause as if he was waiting for responses. I kept trying to hear what he was saying but I never could get any words. He "talked" from about 2am to 4 am and I just lay there holding his hand, amazed as he hadnt responded verbally to me is 6 days. I have no doubt that he was talking to those who had come to get him, and this has brought me immense comfort and the knowledge that there is something after this. About 4am he stopped talking and no longer squeezed my hand in response to my squeezes. The next morning his family came at 8. His mother held his hand the whole time. At 12:30 his sister said they needed to go back to work and they all kissed him and left. I looked at him, after they had gone, his lips were dry and turned to get a sponge to wet his lips. when I turned back I noticed he looked different. I couldnt feel any heartbeat or breath and called the nurse. She came in and pronounced him. I called his mothers cell phone, they were not even out of the parking lot. He was very close to his mother and I dont think he wanted to die in front of her, and held on until she had gone. I know he is ok and death is not the end. The way he passed, has changed my outlook on the dimensions of life and death.

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  14. 14
    almost 4 years ago
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    Loss

    This person has yet to add any details about this experience.

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