I want to wish everyone nothing but the very best as we head into 2008.
I haven't had a chance to check in lately because we’ve been in the middle of moving. We don't have a phone set up at the new place yet, which means no internet access either. Most of my updates will be coming from my office or whenever I can get a connection at someone else's place. 😁
I hope you are all doing well. Over the next few days, I'm going to try to wrap up all the remaining paperwork regarding the Association...
That’s all for now... sending my warmest regards to everyone, and hoping this new year turns out to be much better than the last one.
Angela Wright said:Since I’m currently drowning in a sea of membership requests, here are a few updates: Today we should finally secure our new official government domain www.clarityofvision.gov. As a registered non-profit, we have the right to it, so we'll eventually migrate over from www.carcinoms.com. We haven't officially finalized the enrollment process yet—to be honest, the sheer speed at which people are signing up caught us completely off guard. We’ve tossed around a few ideas, but one plan is to host an online registration portal on the site where you can pay dues via the association's bank account, which will likely be $17. Once registration is confirmed, we’ll mail out physical ID cards to your home address. Yesterday, some folks suggested we look into whether we qualify for any federal or local government grants. It’s still unclear, but if we can secure some funding, we could really kickstart our initiatives (if anyone knows anything concrete about this, please send me a DM). Our first major project will be drafting, printing, and distributing informative brochures to hospitals and clinics. We want specialized booklets for each type of cancer covering the basics: the nature of the disease, treatment options, hospital locations, where to find psychological support, and advice on how to mentally face the diagnosis. We also want to cover nutrition, alternative approaches, and so on. We’ll specifically print a separate guide for family members and friends who suddenly find themselves thrust into this situation. They often struggle with how to react or behave toward the patient, even though the love and support of those around them is just as vital—if not more so—than medical intervention. Later today, I’m going to touch base with slyseal28 to coordinate that inquiry regarding changing oncologists at the Mayo Clinic, so hopefully, we can finally get some movement there. In all seriousness, I truly hope as many of you as possible join us in this fight. We all know how broken the system is, and I don't want us to end up feeling like we're just tilting at windmills. I want us to take down a few "nuclear power plants" too, 😉 and we won't be able to do that alone (maybe slyseal28 can pull off a solo mission, 😍). That’s why we need you: doctors, lawyers, accountants, designers, psychologists, educators—everyone else whose profession I haven't listed. If you are part of this struggle, we need you. Something meaningful has to come from this—it has to—for those currently fighting, for those who lost their battles, and for those who will soon face this reality. Sending love to everyone. Let's go, for a NEW DAY!🙂
Today, my dear husband had his chest CT scan, and the results are absolutely FANTASTIC!!!
The report states: "...No signs of potential tumor enlargement in the mediastinal lymph nodes were observed. The trachea and both main bronchi show normal lumen width and regular flow. Following IV contrast administration, there are no signs of pathological opacification. Regarding the lung parenchyma, no focal lesions or signs of pleural effusion are visible."
"The only things visible are scars: 'On the left, an extremely high position of the sternum is visible, along with soft tissue, fibrotic, postoperative, and post-radiation scarring following the aortic arch and extending left laterally from the pulmonary artery trunk.'" —that’s where that damn SS-guy used to be, and now he's GONE!!!
We had the CT done at a private clinic called Diagnostic Imaging Pro. We actually did the MRI there before the surgery. Since they take Medicare, you can go with a referral, though you'd end up waiting about 2-3 weeks in that case. The staff there is professional, kind, and genuinely welcoming, regardless of whether you have a referral or are paying out of pocket. Plus, they maintain such meticulous patient records that they had no trouble printing out the old scans to compare them with the new ones.
My Pigeon is doing wonderful now. He'll likely head back to work sometime after the New Year. For now, he just needs to rest... These days spent waiting have been quite draining for both of us. Things feel a bit heavy; we've carried so much worry and fear lately. We still have a follow-up with the attending physician next week and a PET scan scheduled for December 19th, which should wrap things up for this year. As for how often we'll need these checkups, I'm not entirely sure, but I suspect it will be at shorter intervals, maybe every three months or so.
Anyway, my friends, we are doing well and we are happy! Both of us have birthdays coming up this week, and this CT result is the most beautiful and cherished birthday gift we could ask for! We beat that SS-guy!!!
Nancy Thomas18 said:Hello, everyone. I’ve been following this thread for quite a while now, reading through every single page. I was personally diagnosed with colon carcinoma and went through two surgeries in just a single month. During all of that, I found a strange kind of solace here, reading the kind words you all share with one another. It’s just me and my son right now—he’s studying in NYC—so I’ve been navigating these crises mostly on my own, though I feel close to you all. I have so much respect for Angela Wright; I truly believe she is the kind of exceptional person anyone would want by their side, whether in health or in sickness. And I admire Diana too; she is such a fierce fighter, something I feel I’m still struggling to find within myself. I’m about to start chemotherapy, and honestly, I have a mountain of questions that I can't seem to find answers to. If anyone would be willing to share some advice regarding nutrition, managing the chemo side effects, or dealing with post-op complications, I would be incredibly grateful. I’ll keep reading, and I might reach out from time to time when things get heavy. For the most part, I'm here, and perhaps one day I'll be able to offer some help to someone else based on what I go through. Hang in there. Let's fight this until the very end.
When I really sit down and think about it, this kind of restructuring actually makes sense for new patients. Ideally, you want to be guided by a specialist who lives and breathes one specific type of cancer—someone whose entire focus is that particular diagnosis. If the hospital organizes itself this way, doctors end up focusing exclusively on certain malignancies, which allows for much deeper, more high-quality case analysis. It could lead to better data collection regarding which treatment protocols actually yield the best results for specific tumors.
That said, this shift is a nightmare for anyone currently mid-treatment. It is incredibly taxing for a patient to be forced to meet a new doctor in the middle of their journey, having to restart the whole process of getting acquainted, adjusting, and trying to build trust from scratch. Personally, I’m not sure how much I would appreciate being handed off to a new physician right now. 🤷 I suppose this transition was inevitable at some point, but I can't help but feel it could have been handled with a bit more empathy for those already in the system.😕 Regardless, we need to hear the other side of the coin—the oncologists' perspective. Are they actually satisfied with this new division of labor?
I’m looking forward to my appointment at the University Hospital with the associate professor; hopefully, I'll get to hear his take on all this.
Yes, I actually heard about a friend of mine who went to the University Hospital this week. We’re planning to see our specialist next week.
I’m going to have a word with him, and honestly, I think we should take this to The Morning News. There is another issue at the University Hospital that really needs some public outcry—they haven't been providing original CT scans for a while now. All you get is some printout on an A4 sheet.
The problem is, you can't even seek a second opinion. No decent doctor is going to give you a real second opinion if they don't have the actual digital images in hand!
On November 15, 2007, we broke the news on our homepage www.carcinoms.com regarding the possibility of getting a PET/CT scan done in Washington, D.C. covered by Medicare via a standard referral. I actually received a comment from one reader claiming that such a scan couldn't be handled through a referral—apparently, she was told that directly by someone over at UnitedHealth Group.
To set the record straight: the report is verified and absolutely accurate.
I took it upon myself to call UnitedHealth Group personally to confirm, and they clarified that if you have the proper clinical indications and a recommendation from an oncologist, the scan can be performed without any issues under Medicare coverage. That said, it’s probably wise to have some supplemental health insurance so you aren't stuck footing the bill for the co-pay. So, there you have it—the lowdown on PET/CT scans in Washington, D.C.
Anthony Perez7 said:Could someone please step in and use some plain, everyday English to explain the symptoms, causes, and consequences of this condition—whatever you want to call it—and one more thing: what on earth is fibrous dysplasia?
I’ve been digging through Google, but everything useful seems to be in dense medical jargon, and the few things written in plain language don't actually tell you anything helpful... or they barely scratch the surface.
Grace Fowler said:Hello, my dear friends!!! So, the results are finally in... I honestly don't even know what to say to you all... basically, the situation is nearly identical to how things looked back in May when they diagnosed the recurrence with metastatic changes in the lungs (something has decided to settle in there and just won't budge). On the bright side, they spotted some calcifications which suggest the chemo actually did its job, and there hasn't been massive progression. On Monday, I’m taking everything to the oncology board to decide on the next steps—likely more chemo, since I can't radiate my hip anymore; I've reached the maximum dose allowed for that area. I wouldn't say I'm overly devastated; perhaps I was hoping for even a tiny bit of better news, but what is, is... I'm pushing forward... though I have to admit, even after fighting this war for almost nine years, whenever those bad results roll in, a certain amount of anxiety always creeps in. I won't keep repeating myself like a broken record, so based on that, I'm just moving ahead... Thank you all for the support... I'll check back in once I get instructions on what comes next... Stay kind and stay brave. Your Diana
This is my first time ever posting on a forum, but I decided to start right here, with you, Diana, because I truly admire your strength and spirit, especially now when you were likely expecting much more. I understand you completely, because I’ve been battling ovarian cancer since 2001, and I know exactly how it feels when the disease makes a comeback. Up until now, I’ve had three recurrences, and I was incredibly lucky that after the last one in October 2003, the damn thing hasn't shown up again! My stage was IIIc—CA 125 was 1750—so, it had progressed. I just wanted to share that to encourage you a little more, because there are so many similar cases where, even after multiple recurrences, the disease either stabilizes or stays away for good. You are a fighter; this is your battle, and you are going to win it!
We all need stories like this... you really are a warrior, I admire you! 👍
Elizabeth Collins60 said:I haven't been around here for quite a while, and honestly, I can hardly wrap my head around everything happening right now. So, what on earth has been going on these last few days? Just a few hours ago, my best friend lost her father to that awful disease. Angela Wright, Carol Ramirez—please accept my deepest condolences. I truly share in your grief. Angela, you’ve always had such beautiful, comforting words for everyone else in this group... but now you have to face the hardest part: applying all that wisdom to your own life. From what I can see, you’re already doing it. I truly admire the immense strength you've shown, and I know you'll continue to find it. You really are an inspiration to all of us. It’s been exactly two months and two days since my father passed, and I still can't quite believe he's gone. And that damn feeling of "never again"... I still catch myself thinking I see him, or waiting for him, or calling out to him, wanting to tell him something. The other day, for the first time, my mom and I actually shared a laugh while remembering him. I suppose I am slowly finding some peace. I feel so incredibly grateful that we had him and that we shared such a wonderful bond; so many people live with parents who are perfectly healthy and yet act as if they don't even exist. I still haven't managed to find that website you guys were mentioning... I'll try looking for it now. If there is any way my knowledge might be useful, I'm more than willing to help.
electricgardener14 said:My husband closed his eyes for the last time on November 18th, after six months of excruciating pain, suffering, and fear. I couldn't help him; nobody could. This disease progressed so terrifyingly fast that it was always one step ahead of us. I don't even know what I'm feeling right now—it’s a mix of numbness, helplessness, and then this sudden surge of anger at God, and at myself for not being able to save him. He wanted to live so badly. Even when he became immobile, unable to move his arms or legs, that spark in his eyes never faded. Sometimes I get this crushing feeling that I gave up before he did, that I should have fought harder or tried something else. That I let him go too soon. It’s so incredibly hard, and I don't think I'll ever forget that final conscious look in his eyes. It held all the sadness in the world. Does it always have to be this difficult? Diana
Dear Diana,
Please accept my deepest, most sincere condolences... I can only begin to imagine the sheer agony and the void you're feeling right now... Please, believe me when I say you did everything within your power, and he knew that. He sees that now, from somewhere above, and he's watching over you... He is your angel.
We are all standing right here with you... Whenever the loneliness or the sadness feels too heavy to carry, just know we're waiting for you here... 😘
Grace Fowler said:Greetings, my dear friends! The results are finally in... and honestly, I’m at a loss for words. The situation is largely unchanged since May, when the recurrence was diagnosed along with those metastatic changes in the lungs (something has seemingly taken root there and just won't let go). On the bright side, they spotted some calcifications, which suggests the chemo did actually achieve something, and there hasn't been massive progression in the disease. This Monday, I'm taking everything to the oncology board so they can decide on the next steps. It will likely be more chemo, as I've reached the limit for radiation in that area—they can't target the socket anymore without hitting the threshold. I wouldn't say I'm devastated; perhaps I was hoping for a slightly better outcome, but what is, is... I have to keep pushing forward. I must admit, though, even after fighting this war for nearly nine years, whenever these less-than-ideal results roll in, a certain amount of anxiety inevitably follows. I won't keep repeating myself like a broken record, so I'll just move on. Thank you all for the support... I'll check back in once I get the orders on how we proceed. Stay kind and stay brave. Your Diana
We are thinking of you... sending you positive thoughts and the strength to endure it all. 😘
Carol Ramirez said:Every single person is an individual. Even if you run into someone on this forum with the exact same diagnosis, just because their story ends in a permanent goodbye, don't go assuming that’s your rule to follow. That’s why I would STRICTLY FORBID using statistics when dealing with serious illnesses; it's nothing but a dangerous distraction!
I couldn't agree more... A year ago, they were predicting very little time left for my Pigeon (my wife)... Today—well, maybe "little time" is still a factor, but it doesn't matter—he is doing fantastic. Back in the ninth month, things were looking great... Now we're just waiting on some new results, and they better be good. We aren't giving up.
Tomorrow, carcinoms.com should be featured in The Morning News as a web feature—it’ll be on the penultimate page, right under the weather report. Fingers crossed!
Amanda Williams64 said:Or anyone who might know the right place to take this question... Where can I file a formal complaint, or better yet, put someone on a public pillar of shame? I'm talking about a "Director of a nursing home" who brutally insults a family member just for coming in to request placement for a helpless loved one.
Can you walk me through what happened? How would you ideally want to handle this—through the local news, via our forum, or maybe a talk show segment? It’s hard to give you a straight answer without knowing the specifics of the situation or how much exposure you're looking for. Feel free to reach out to me directly; I'll do my best to help you navigate this... 🙂
wanderingranger3 said:The metastasis is still technically there, but the scan shows it’s no longer active. I don't quite know how to put it—it's dormant, dead. Even if we debate whether it was truly a metastasis to begin with, Paladino and Heinrich weren't questioning that; they were certain. We didn't get a biopsy during the Gamma Knife procedure, though. Perhaps the doctors just want to be cautious and prepare for the worst-case scenario. I honestly don't even know anymore.🤷
How can a benign tumor have metastases?
You mentioned the PET/CT came back good, which feels strange... what exactly is the diagnosis?
feralwolf24 said:slyseal28, I might be able to help out with the site if you think it would be useful regarding stomach cancer. Specifically, I can help raise awareness so people who don't even consider themselves high-risk know when they really need to push for a gastroscopy. To give you some context, my husband—who is under 40—went through this exact thing. He was only diagnosed because of a gastroscopy and biopsy; every other test came back perfect. It turns out, according to one doctor, he caught it "too early." The cancer hadn't even penetrated the stomach tissue yet; it was just on the lining. That’s the extent of how much I can contribute, along with nutritional advice based on what our nutritionist recommended. Good luck with the page. I'll be following!
I'm a bit late to the party here...
Actually, please feel free to post anything you think might help someone. If you're up for it, sharing your husband's story here on the forum would be incredibly valuable... and dietary tips are always more than welcome. I'll see you all over there. Sending my best to everyone. 🙂
Tomorrow, there’s an article hitting the presses over at The Miami Herald regarding www.carcinoms.com
I haven't had a chance to see what the reporters actually put down on paper yet, but I'm crossing my fingers that they manage to stay objective. Let's hope for the best.
Angela Wright said:Honey, I am so sorry. If it helps you at all—and maybe it helps me too—just know that we gave everything we had. We poured ourselves out until there was nothing left, even more than we ever thought we were capable of giving.😢
Yesterday, we said our final goodbyes to my mother at the crematorium. There were so many people there; some I didn't even recognize, but she had this way about her—this gentle nature and a spirit so bright and kind—that she touched their lives, too. These are easily the darkest days of my life. Her photos are sitting right there on the table. She’s looking back at me with that constant smile, and I just can't wrap my head around the fact that I won't be able to touch her again. I won't hear that ringing laughter, or the sound of her quick footsteps echoing down the hallway. I won't get to touch those blue-streaked locks of hers or look into those warm, deep eyes. No more hearing her little catchphrases and jokes, no more eating her homemade cheese pies, or just grabbing coffee with her down on the Boardwalk... It's all flashing before my eyes, a constant loop of memories, and every single one of them whispers "never again." On Monday, we’re taking her ashes down to San Diego, and by Tuesday, she’ll finally be resting alongside her mother, father, aunts, and grandmother. They loved her beyond measure.
"Farewell to you, my only precious one, Sleep peacefully by the shade of Central Park. Stay with us, may the sun keep you warm, And may the seagulls watch over you always."
I honestly don't know what words to offer you, other than telling you how indescribably sorry I am... I can almost feel the weight of your grief myself...
If I might try to lift your spirits just a tiny bit—there’s an article coming out in The Miami Herald this Sunday about www.carcinoms.com. I mentioned to them that the site was started by cancer survivors and their families and friends... it's a space meant for all of us...
Sending you a huge hug and all my support... we'll be waiting for you over at carcinoms.com 🙂