Latest news with #EwingsSarcoma
Washington Post
3 days ago
- Health
- Washington Post
Living with dying: A breathtaking collapse in the writer's health
It happened so quickly. On June 1, I was still looking the picture of health and free to move around the city. A week later, I was gasping for breath and without the oxygen to walk from my sofa to my kitchen. We had always known the disease would catch up with me in some form or another, but the speed and suddenness still took me by surprise. It probably shouldn't have. For the past six months, my doctors had been looking at me with a quizzical eye, noting that I was in much better shape than a Stage 4 Ewing's sarcoma patient who had forgone systemic chemo treatment should normally be. 'It's kind of amazing,' one of them said. 'We have no real scientific data on this, but I can't help feeling your attitude is part of it. But whatever it is, keep doing it, we'll take it!' I, of course, began to feel as though I might indeed be charmed. Nobody who met me could believe I was really sick — and I began to believe this resilience might just go on and on. I knew the science said otherwise, but I was a bit self-satisfied and a bit smug about still being able to do a downward dog. Hubris! My anchor oncologist, Karim Boudadi, was also glad to see me doing well, but he never failed to offer a gentle reminder to do everything I wanted now rather than put it off. And I'm glad I took his advice. I undertook the 'wear more cashmere, go to Paris' treatment. I made sure to get to Seattle to celebrate Passover with my sister, brother-in-law, nephews and their expanded friend group — an important event on my calendar for more than four decades. When DOGE rode into D.C., I amused my radiation therapists with my 'radiation and demonstration' protocol, which took me directly from photon therapy to pickets at a wide number of federal agencies. And I visited many of my close friends, enjoying the rapport that comes from shared times and experiences, from a communal passion for justice and 'good trouble,' from a mutual love for the written word and for each other. I am so grateful for all of that. Because the transition from health to infirmity was brutally swift. That first week in June, I started to notice a slight shortness of breath, and my right arm bone, where the cancer had metastasized, was achier and feeling weaker. So on June 5, I went to Sibley Memorial Hospital for a scan to see what was going on. Afterward, when I returned via Metro, it took me at least half an hour and much gasping to get myself the five blocks home. That whole weekend, I gasped for air, which confirmed that I was unwilling to have that be a way of life. If that was my future, I wouldn't be buying into it. My brother, Gene, arrived on the following Monday. On Tuesday, the team at Sibley removed about five cups of fluid from my lung. And the next day, almost exactly eight months since the leading adult sarcoma expert at Johns Hopkins had met with me and laid out my options and my roughly year-long prognosis, I was approved for home oxygen — and a narrower road ahead. It's ironic that the publication of my first article about learning I was terminal appeared in The Washington Post that very week. In it, I observed that I was about eight months into my projected terminal year — still enjoying life and not yet a 'dead duck.' Now, here I was, a few days later, unable to easily breathe or move and feeling quite a bit closer to my final quack. I can't say this transition is edifying or comfortable, but I still seem to be of relatively sound mind, still not in serious pain, still loving my friends and family and engaged with the world. In the next month, I'll be tying up some loose ends, making the transition from Hopkins to hospice, and settling into my final months. I am still feeling good about my choices. Still interested in the philosophical landscape of how we categorize luck and loss and what makes life worth living. No telling what's down the road, but for now, I think I'm good for a few more quacks.
Washington Post
06-07-2025
- Health
- Washington Post
A patient's eye view of radiation therapy: This is what it feels like
Too often in pop culture, 'cancer' is synonymous with chemotherapy and depressing scenes of noble patients enduring hair loss and intravenous drips. But for many people, including palliative care patients like me, radiation therapy can provide another avenue to slow disease and reduce pain with fewer side effects. Although it can also be a robust part of curative treatment for a range of cancers (including prostate and breast cancers), in my case, it quickly — and disappointingly — became clear that radiation wasn't going to jolt my metastatic Ewing's sarcoma into retirement (never the likeliest outcome). But it ameliorated some discomforts and with notably less wear and tear than the chemo alternatives.
South Wales Argus
01-06-2025
- Health
- South Wales Argus
Hedyn Homes to fix Llanmartin home for cancer suffering boy
Alfie Smith was diagnosed in January and requires chemotherapy and major operations. Bathing is central to Alfie's care and he only has an unfit upstairs shower available to him. Today, after months of inaction, Hedyn Homes released a statement, following an Argus investigation: 'We're aware of the family's needs, and we're in the process of carrying out the necessary repairs to the home. "We know that there are more works required, and we are working closely with the family and occupational therapist at the University of Hospital Wales to adapt the home." A source has said Hedyn will now start work on the LLanmartin home in June. Currently, the home's upstairs walk-in shower is unfit for purpose, its residual damp causes constant mould to reappear after cleaning. The Argus investigation found damp smells coming from the plughole. Little Alfie is having chemotherapy, which weakens his immune system. Alfie, who also has asthma, is required to bathe twice daily. Mould is a serious danger to his health. Mum, Jess Dean said: 'No matter what I do, I just can't get rid of the mould. There's an old 'bogging' shower seat that needs to go too!' Alfie has Ewings Sarcoma and the house currently fails to meet any of his basic needs. He faces a surgery marathon that will remove an arm bone and replace it with part of a leg bone. He will then need a specially designed wheelchair and years of physiotherapy. The problems with the home are many, explained dad Mike: 'In the front garden there is a broken low-lying wall, the path isn't suitable for a wheelchair, his bedroom is upstairs and has no proper lighting. "The problems just keep on coming,' explained Alfie's dad, Mike Smith. Mum Jess explained before Alfie became unwell, he fell off the dangerous garden wall and was badly hurt in the area he now has cancer. Many parents believe that Ewing's sarcoma is triggered by injury. 'The path isn't wide enough, has trip hazards and it's wall is dangerous,' said mum Jess. She also explained that after surgery Alfie's wheelchair won't fit the path. Neighbour Wayne explained: "They've been failed, put out of site and out of mind and forgotten about. Let's hope this is the start of them being treated decently.'
