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    La.M.Robert Kessler
    1/23/14 5:05pm

    The outside world becomes a real bitch now, especially in the city of subway coughers and grimy handrails.

    My husband is on immunosuppressants. He won't touch hand rails, or anything else in public generally. And he is terrified of children. When I worked with them I was hard pressed to get him to come to events. And when I became ill (which is never ending when you work with germ factories) I was all but quarantined until symptoms subside. On that note, he never gets sick beyond the chronic illness that he has. Just be careful and keep hand sanitizer with you all the time. Best wishes in your treatment and recovery. And if you can, get your hands on some medical grade cannabis product.

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      CzarletLa.M.
      1/23/14 7:15pm

      I am also on immunosuppressants, due to a kidney transplant, but don't take that sort of precautions....certainly not judging him!
      My kidney is no failing after 8 years after contracting the BK virus, but otherwise I've been illness-free for all this time.

      My best to your husband.

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      La.M.Czarlet
      1/23/14 7:50pm

      Between me, you and the keyboard, I think he is overly paranoid. But whatever he needs to do to keep himself calm about being around germs is fine with me. It doesn't effect his day-to-day.

      I met a woman in my building just yesterday who has had a kidney transplant. Fascinating story. She was able to do so many things that she never thought possible including having kids. Best wishes that your kidney stays healthy for ever.

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    ChallahbackRobert Kessler
    1/23/14 3:35pm

    How can I (or anyone else interested) send you a gift basket or flowers? If that's not possible, can I make a donation to a charity in your name?

    I've lost too many people to cancer, so if I can contribute in some small way to your fight, it would really ease my Jewish guilt.

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      Robert KesslerChallahback
      1/24/14 8:54am

      Thank you so much for asking. The best thing you can do would be to donate blood. I've already received two blood transfusions and can't imagine how many more I might need throughout this process.

      If you live in New York, here is how you can donate in my honor at Memorial Sloan-Kettering Cancer Center. If you don't live in New York, feel free to give anywhere. Someone is going to need it.

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    kbasaRobert Kessler
    1/23/14 4:39pm

    Good luck, man. My wife was diagnosed with Stage IV B Cell about 4.5 years ago and she's now celebrating 4 years of being clear. It's tough to offer advice here, but I'm going to anyway. 1. Be the Best Patient Evar. Every time you miss taking medication or think some symptom is going to blow over, you're letting NHL get ahead. 2. Be super concious of your body. I watched my wife go from fine to deathbed in about 2 hours one Friday afternoon, courtesy of neutropenic fever. It happens that fast and is potentially that deadly. Take those guidelines about fresh flowers, masks and the like seriously.

    I ride for Team in Training, helping to raise money for blood cancer research. I'm working in a support role this year, but next year, I'll be riding for you and too many others I know with blood cancers.

    Finally, if you need help with things like transportation, reach out to LLS. I ran into a guy that had benefited from LLS paying for his parking while he was in chemo. You never know.

    Best of luck from SF, CA.

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      Death BlowRobert Kessler
      1/23/14 4:00pm

      My mother was diagnosed with this in July, 2008, and started chemo soon thereafter. Her last session (of 5 or 6 treatments, every 3 weeks I think) was on/around Halloween that year. Since then, I think it was two years of the post-chemo drugs and she's been in remission ever since. I still to this very day believe she beat it because her attitude upon diagnosis was "I am going to beat this", and she did. Best of luck to you - and do your best to stay positive throughout, no matter how shitty the chemo makes you feel (and it will; just when you start to feel "back to normal" it will be time for your next treatment).

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        PoopiesAFRobert Kessler
        1/23/14 3:34pm

        Did anybody ever try to make the Good Hodgkins/Curb Your Enthusiasm joke to cheer you up? Or do most people treat you like a fragile piece of porcelain and speak only in whispers. Best of luck. Mad respect to you. I'd probably still be a crying lump of human wrapped in the fetal position, let alone sharing with the world.

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          thelogicalcentristPoopiesAF
          1/23/14 4:38pm

          I was diagnosed with stg 3 colon cancer a year and 1 foot of colon ago. I vacillate from super human to the fetal lump. I feel like it's the stalking butler in an old movie. At any moment a routine test could hit me over the head with a candelabra. If the nurse says "here's your oxy(whatever)" go for it. Not that positive, but this is where I'm at.

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          PoopiesAFthelogicalcentrist
          1/23/14 5:07pm

          What good is it to worry about your mortality when you can be high instead :-)

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        Daniel SecoRobert Kessler
        1/23/14 5:53pm

        I was diagnosed with the exact same typo of cancer as you in 2/2013. I'm officially in remission six months today. I'd recommend getting a port instead of a PICC. I've had both.

        All my best,

        Dan

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          김치전!Robert Kessler
          1/23/14 4:01pm

          Oh, man, nothing is more morale-crushing than the unexpected extension of your hospital stay.

          Good luck! Every cycle gets easier than the last, because you know more and more what to expect.

          Oh, and if you do get a fever when you're immunocompromised, insist on speaking to your onco BEFORE you go to the ER, because once they admit you, you're trapped in germ hell until a bed on the cancer ward opens. Your onco may be able to grease the wheels.

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            dperkins001Robert Kessler
            1/23/14 4:17pm

            Always sorry to hear news like this. My uncle was diagnosed with (all I've been told, anyway) stage IV leukemia - I don't know what specific type, though. My dad took him to the ER because he was having a hard time breathing. They decided to run tests and keep him overnight, so he told my dad to leave. 30 minutes later, they rushed him to a nearby cancer research hospital and put him on a 10-day chemo treatment immediately. His hair thinned a little and grayed a lot, so they trimmed it down, but for the most part, he was doing better. About 2 or 3 days after the chemo treatment, before they got a chance to check his bone marrow, he had difficulty breathing again, and they found fluid in his lungs during an x-ray. Ended up sedating him, putting him on breathing and feeding tubes for nearly 3 weeks. Finally they were able to wake him and put in a trach, got him set up in bed, and he regained some motion in his arms, so that he could write, since the trach didn't allow him to talk. Downsized the trach as it healed, and now he can speak, and he's feeling better. Bone marrow sample came out pretty well, and they think they knocked out the leukemia, but he's on another chemo regimen to make sure that they put it into remission. In the 3 weeks that he was sedated, he suffered a lot of muscle atrophy, and when you weigh 550-650 lbs, that's pretty important. His size also makes him difficult to handle at the hospital, but he was assured before and after he was admitted, that his lungs were in great shape, his heart was strong and healthy, and his blood pressure and cholesterol were in a healthy range. He had been losing weight before this, too, only about 14 pounds in the last month, but making progress, so that he could get bariatric surgery for some serious weight loss. The medication that came with the chemo caused him to put on about 50 pounds of water weight in the first 3 weeks that he was in the hospital... Also hindering his recovery. He's currently not able to sit up on his own, due to core muscle mass loss, and is only able to get about 30 minutes of physical therapy per day. He wants to go to a rehab facility, where he'll get more attention for PT so that he can hopefully recover quicker, but his insurance won't cover his maintenance chemo medication, which would run him about $100 per day. He also has very little appetite, as his stomach has shrunk, and struggles to take in enough protein on his own for him to build muscle, which is also a roadblock to rehab.

            He's coming along, and it's a long road to travel. Luckily, he has a lot of friends and family to visit and keep his spirits up. There are some really rough times... and it's far from over, but we're hoping that he stays healthy enough to get back on his feet and back on the track he was on before, losing weight and trying to get healthier. He's not quite 60 yet, so he mentions that he's definitely enjoyed his life so far. Feels worse for his new "neighbor" in his wing - 25 year old guy that was just diagnosed with leukemia... Cancer is always devastating, especially when it's not from an obvious source, like lung cancer from smoking or something.

            Sorry for the long story, but I just wanted to let you know that other people are going through similar situations and the results aren't all bad. The turn-around in my uncle, when he was sedated, when someone came in to read him all the new "get well soon" cards that he had received, was amazing... within a few days his conditions improved significantly and he was back to breathing on his own. Support and caring through the tough times really does help. Just wanted to let you know that there are people out there that are always thinking everyone that is sick and could use a little love. Best of luck to you on your journey, sir. We'll be thinking of you.

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              PoopiesAFdperkins001
              1/23/14 5:06pm

              Serious Question: Is it odd for someone weighing 600 lbs and nearly 60 to have a "strong and healthy heart"? Best wishes to your Uncle and your family. Hope he recovers well.

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              dperkins001PoopiesAF
              1/24/14 10:03am

              That depends. If they've been a sloth their whole life, it's probably fairly rare that their heart is the correct size (not enlarged) and working well. My uncle used to lift a lot, and was in better shape (never ripped, but more fit), and closer to 400-450 for most of his 30s and 40s. Did a lot of security work for big bands and local professional athletes. Worked construction, but mostly operating heavy equipment, so it wasn't all extremely "active" work. Typically when you see someone his size, you assume that they'll have a heart attack or stroke any day now, and that's what he always thought would kill him - something to do with his weight. It just made the leukemia diagnosis even more devastating, because he was completely prepared to hear something else, and never thought he'd hear someone say "you have cancer". Never smoked, doesn't drink, never used drugs, just watched a lot of other people throw their lives away on that kind of stuff.

              I'd say someone that's close to 60 years old, 6'6", and around 600 lbs doesn't normally have good blood pressure, cholesterol, and a normal, healthy heart and lungs. Usually you get to be that size by being on a terrible diet and a sedentary lifestyle, and for most people that leads to high blood pressure, diabetes, high cholesterol, an overworked heart or lungs, and a variety of other health problems. He, apparently, has none of those at the moment.

              Oh, and thanks for the well-wishes! It's always appreciated.

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            nodnarbsirhcRobert Kessler
            1/23/14 5:19pm

            Hey brother! Fellow non-hodgkin's lymphoma patient here. I was stage III follicular lymphoma, and I underwent nearly a year of chemotherapy.

            I can sympathize with the chaos of it all... my initial course of treatment was supposed to be weekly transfusions for six weeks, and somehow that was followed by a 6-month ordeal. At one point I was told I was in remission (my friends and family threw me a big celebration) only to be told weeks later by a new oncologist that I would need to start a more aggressive type of chemo called Bendamustine along with the good ol' Rituxan. I don't mean to alarm you, but the period following each regimen gets progressively worse... for the sixth course of Bendamustine, I stayed in bed with what felt like the flu and food poisoning at the same time for about 5 days. The worst part (for me) was not being able to poop for a week.

            I experienced many of the same questions that you have. Mainly, what caused my cancer? I'm sure I beat myself up more than was necessary for all the chemicals I put in my body from tattoos to 24-hour deodorant to, uh, the late 90s. I eventually had to learn, as you said, there is no value in asking.

            I am in remission now, which means I get a bimonthly infusion of Rituxan for the next two years that's intended to prolong my remission as long as possible. My type of lymphoma is incurable and will return at some point. It's not something I let myself think about much.

            Best wishes to you. Plan something to look forward to when chemo is over like a trip somewhere.

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              bdrubeRobert Kessler
              1/23/14 4:58pm

              From my own personal experience, the very worst part was THE PRONOUNCEMENT. As in, "I know you are only 47 and have always been in good health, but your life expectancy is now approximately 11 months."

              A year later, I've finished chemo and radiation and am not only still here, but except for the chemo-induced neuropathy (peripheral nerve damage) am doing relatively well. Whatever else it is, a cancer battle is an eye opening experience.

              Also, don't let the horror stories get you too freaked out. Other than really feeling pretty bad for a couple of days each cycle during the nadir, I made it through chemo okay. Even managed to run a couple of 5K races (though hardly above walking pace).

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