Posts by Benjamin Grant6

jadetinker42 said:Greetings to everyone...

Here we go again, witnessing yet another display of utter incompetence from our federal bureaucracy...

I have posted here quite extensively already, seeking guidance regarding a twenty-six-year-old woman who has been diagnosed with osteosarcoma...
Unfortunately, the disease has progressed to such an extent that there is simply no hope left... Despite the amputation of my right leg, the malignancy has spread to both lungs and continues to advance at a rather alarming rate. From the very beginning—back when the diagnosis first arrived in March 2007—the PhD specialist noted it was a high-grade mesenchymal tumor characterized by destructive growth. By April 2008, just before the leg amputation, an oncologist in Germany classified it as Grade III... While osteosarcoma can be treated relatively successfully here in the States, this particular bastard was far too aggressive...
She’s honestly just falling apart at this point... she hasn't eaten anything substantial in nearly a month, the coughing won't stop, and the pain is just constant... it's truly harrowing to witness. We finally managed to round up all her medical records, including the latest lab results and the discharge summary from Johns Hopkins, where the diagnoses are piled up on half an A4 page, one misery after another... I submitted everything to NOAA, hoping their disability commission would issue the certification she needs to be exempt from supplemental health insurance premiums and, more importantly, to get that handicap placard so she can actually find a parking spot near our destination... I even went as far as asking if this would be sufficient, and the clerk at the NOAA office told me that once they lay eyes on that discharge summary, it should most likely be enough...

As if things weren't complicated enough, I just received a call from the NOAA Regional Office—specifically their disability assessment department—demanding that she show up in San Francisco at the Santa Monica facility, just so their appointed medical examiner can determine exactly what the situation is...😠😠😠

Can you even begin to fathom it? They show absolutely no concern that the disease has reached its terminal stage, seemingly indifferent to the fact that she is simply no longer physically capable of enduring the transport or the sheer exhaustion of navigating their testing facilities...

It is truly a tragic tale of American bureaucracy...😢

I find myself quite speechless. It is truly a tragic tale...😢

brisksurfer said:😘

Ever since this whole ordeal regarding the illness began last year, I have been plagued by this strange, persistent intuition that this wasn't actually happening to me—that I would eventually just wake up... While there are certain consequences from the surgery that simply cannot be undone, hearing such wonderful news truly feels as though I am finally waking from a terrible nightmare!
I wish from the bottom of my heart for your mother to recover... you simply must maintain a steadfast belief that it will happen. It might sound foolish, but for years now, I have lived by that Coelho sentiment—"when you want something badly enough, the entire universe conspires to help you achieve it"! Once we hear that good news, we shall all hold a virtual celebration right here... 🙂stay strong, everyone...

I suppose most of us are going through a similar experience lately, where the line between reality and a dream becomes increasingly blurred...

A small correction... that quote isn't actually by Coelho, though he certainly utilized it. I seem to have forgotten the original author...

Perhaps a Chinese proverb is more appropriate for our current situation:

Be careful what you wish for. It might just come true.

Keep your spirits high, remain positive, believe, and never, ever give up...
Sending love to all the fighters out there...

Lisa White54 said:Well, I wanted to check in with some wonderful news. We were at the clinic in Jordan yesterday for follow-up tests, and everything looks perfect. Based on all the scans they ran, the doctor confirmed there is absolutely no sign of carcinoma anywhere... it turns out he was just dealing with PTSD. Thank God. I can hardly believe we actually managed to kill this monster, that it’s truly gone! I am just so incredibly happy.

It is truly heartening to hear that such a bitter struggle is finally yielding a victory... Just keep moving forward with courage, and through love and faith, even the PTSD will start to fade...

Amy Hayes28 said:My father has passed away permanently😢
thank you Jane and everyone who extended a hand in any way during our grief.

Please accept my deepest sympathies; I am certain you will cross paths again under much brighter and happier circumstances... I know how heavy this parting feels, but please continue to stay brave and keep fighting...

Dana Baker37 said:[/B]
thanks Maria Fox 🙂
I am truly happy for you and your mother, and I will be keeping you both in my thoughts as things move forward... 👍
As for myself, I am also feeling quite content today because I have been granted permission to visit my mother (I am heading there tomorrow), though I expect it will be rather brief... regardless, it should be enough time to see her and bring along some essentials. On a side note, I really must commend the physicians and nursing staff at Mercy Hospital, as their level of care and vigilance regarding my mother's condition is truly noteworthy... 👍
Best regards to everyone!

I can imagine how much this means to you, and I am genuinely pleased on your behalf... especially since even a fleeting moment with your mother will provide some much-needed peace.

I had intended to write another day about how difficult it can be for our mothers, and how necessary it is to respect their wishes when they admit they simply don't have the strength to face us anymore. Over the last few days, I found myself confined to bed, utterly incapacitated by a certain weakness and pneumonia, while my own mother called me—not out of concern for herself, mind you, but because of me... It turns out I am far more fragile than she is, considering she has accepted everything as just a way of life...

That is all for now, and I look forward to reading your update on how the visit went... stay strong.

Dana Baker37 said:Greetings to everyone...
My mother has been undergoing treatment for lymphoma for two years now... Yesterday, she headed back to the hospital in New York City, where she will be staying for four to six weeks. This week, she begins chemotherapy that is three times stronger than her last round, which itself was three times stronger than the one before that... Following that, next week she will receive stem cell treatments harvested during her previous stay at the facility. She remains in isolation the entire time; I am unable to visit, and even our phone calls have been reduced to an absolute minimum because she requested that she would call me whenever she finds the strength to talk... I feel numb, useless, and frightened... She bears everything with such stoicism, possessing a truly resilient spirit, though there have certainly been better and worse days... But this time, I found myself unsettled by the feeling that this is—or at least, it feels to me as if it is—the final battle... either she recovers this time, or she does not. I cannot allow myself to despair, first and foremost for her sake, and secondly for my children, who immediately pepper me with a thousand questions the moment they see me crying, and it is just so incredibly difficult for me.....

Angela Wright gave you the right advice!

Believe me when I say that I share the exact same thoughts you have poured out here. Every single time my mother leaves for chemo, I am left feeling empty, stunned, existing in some other realm, unsure of how to carry on because every time she departs, it is for an indefinite period: she might be away for two days, three days... a week, or perhaps she may not return at all. Communication is reduced to nothing, and that is arguably what I struggle with most. Believe me, I find myself walking down the street smiling, only to burst into tears the very next moment. Eventually, I come home and tell myself, "don't be a fool," because tears won't help anyone.

Therefore... believe in her and do not give in! Keep the little ones occupied: play with them more, engage more deeply with them, and perhaps they will ask fewer questions.

Those four to six weeks will pass just like that, even if it feels like an eternity right now! I am sending you a massive hug and hoping that this fear subsides quickly and that your mother regains her strength soon! Kisses

Angela Wright said:And just like President Reagan used to say, "My friends, we did it!"...

As of March 1st, Sutent and Tarceva will finally be added to the Medicare coverage list!🎉🙂🙂

Get the treatment you need, people...👍

Moving forward...

HATS OFF TO YOU! You all are true fighters, giving it everything you've got. RESPECT!

Elizabeth Gonzalez55 said:Nancy Hernandez43, please don't take this personally, as I know your intentions were pure and you truly wrote such a lovely, warm, and encouraging post... but I simply need to vent a little...

Over the past year, as we've been fighting this battle against melanoma, about twenty different people have reached out to me after receiving a late-stage diagnosis. Without fail, every single one of them was sent straight into chemotherapy by their doctors. I would truly, deeply love for someone to give me an answer—ideally an oncologist—as to why they insist on poisoning people and destroying them with DTIC when they clearly know it achieves nothing at all... We know it doesn't work, because they told us that straight to our faces, whether we were at the local university hospital, Rebro, or even in the US or Germany, and anyone who knows how to use Google can find that information and convince themselves just as easily...

What is the point of all this? Where is the actual medicine, where is the Hippocratic Oath, and when will doctors finally start actually helping those suffering from melanoma instead of just making things worse... One wonderful young man, a father of two little children, passed away simply because the doctors in Germany couldn't admit him for treatment due to the devastating condition caused by DTIC...

I would honestly prefer if it would just end with the agony...

Unfortunately, I wasn't aware that it had no effect on melanomas...😢 That concludes my rambling regarding my preoccupation with other ailments...

What I wrote was meant to apply to most illnesses, much like those remarks relayed by my mother's oncologist... Once the recurrence appeared and she had to undergo another surgery, Mom didn't quite grasp the gravity of needing chemotherapy all over again; honestly, seeing how terrifyingly frail her arm looks after every single treatment session is devastating enough for me, so I can only imagine what she herself is feeling...

And I truly am sorry that you found yourself in a situation so distressing that you felt the need to scream...😢 You aren't the only one...

Sandra Rogers48 said:What are your thoughts on this .... My granddad was diagnosed with ocular melanoma last year after losing partial vision in that eye. The eye was completely removed, and the doctors assured us that was it—that they had cleared everything out and no chemotherapy would be necessary. A six-month follow-up was scheduled. He went in for that checkup last November, at the eleven-month mark. Since then, the tumor has metastasized to his liver, lungs, and right shoulder bone with terrifying speed. It’s just galloping away... he hadn't shown any symptoms, no pain, appetite was perfectly fine... then they recommended chemo... he started the first round... now he has absolutely no appetite, he feels weak constantly... he has lost weight terribly... I don't know if my opinion sounds harsh to anyone, but I wouldn't force him into chemo. He's 70... he doesn't have much time left... for heaven's sake, why make him suffer through chemo when all it does is leave him miserable and unable to eat.... what do you all think?

I kept checking back to see if anyone had replied before me. Unfortunately, cancer doesn't offer the luxury of peace, and it frequently shocks you with metastases that spread at an incredible pace...

Chemotherapy represents that sliver of hope doctors offer to those who have undergone surgery; if the physicians deem it essential, one should trust that this current bout of weakness will pass, and that subsequent rounds of chemo will proceed more smoothly...

You really ought to reconsider your thought that "he doesn't have much time left," because I would be the happiest person alive if cancer hadn't taken my grandfather, allowing him to at least reach 70 or beyond. Similarly, I have an 87-year-old grandmother who was struck down by Alzheimer's, and as difficult as it is to look into her sorrowful eyes... I am grateful she is still here, reminding me of everything she did for me, fueling the love we once shared aloud, which we now share only through glances...

After her first surgery, my mother grew visibly frail and began surrendering herself to the inevitable end that seemed to be looming. One morning, her doctor grabbed her and said, "Ma'am, pull yourself together! A human life is like a meter, and you're only halfway through... who is going to finish the rest for you?" So, your granddad is only two-thirds of the way through that meter; he still has so much to experience and endure, and he mustn't give up. There is a whole range of advice available to help restore his appetite, because even alongside chemo, it's entirely possible for appetite to vanish due to apathy and the heavy strain on the body...

Fight! Fight! No giving up! None at all! And how my mother, two years after her own "rallying," would say, "Let's keep going! What else is there for us?!" I truly hope she never stops saying that, no matter how hard it gets...

Kisses to all the fighters!

slyseal28 said:I am far from impressed; if anything, I find myself quite disappointed...

My perspective on why cancer treatment success rates vary so significantly between certain countries is this: it primarily comes down to the availability of cutting-edge targeted therapies and much easier access to clinical trials, which can offer a genuine lifeline to those battling incurable and debilitating diseases. For over a year now, I have been trying to get the pigeon enrolled in a study, and I haven't given up hope just yet...

Regarding those claims that heart cancer doesn't exist—it’s absolute nonsense. Of course heart cancer exists, even if it is certainly rare... after all, the heart is primarily a muscle...

What bothers me most is this assertion that cancer originates at the level of the mind... Good grief, people, it isn't just centenarians who have spent a century stressing over trivialities that fall ill! Children get cancer, young people get cancer, and the elderly get cancer too. It has absolutely nothing to do with one's mindset... If it did, then perhaps we could simply think our way out of a cure...

To be more specific, taking the Avian case as an example, every single patient essentially becomes part of a larger study, consenting to have their data processed and published just so it might be slightly easier for others to receive an accurate diagnosis and move forward with treatment...

We are currently waiting for the third round of chemotherapy here... things didn't exactly go smoothly after the second session, as her neutrophil levels plummeted to an extremely low range. It’s quite difficult to discuss the specific details of the treatment with my mother, though she did manage to press the oncologists about whether there are any alternative medications—the kind not typically used in standard protocols—that are known to have a more potent effect on cancer cells... and they confirmed that such options exist and will be utilized if her condition reaches a certain stage. Unfortunately, I still don't even know which specific drug she is receiving for her chemo, as those are the types of questions that lead to rather heavy conversations...

I haven't watched the show, nor do I particularly care to, but regardless... cancer isn't a disease that picks and chooses its victims based on age or type of person...😢

rapidfalcon13 said:Dear friends of this forum,

Today, our dear Dina9 has departed to join the angels 😢... I know this because she truly was an angel herself🙂. She closed those sorrowful eyes of hers—those eyes that had grown so heavy lately—and went to be with her father (that was how she used to put it, saying he was waiting for her, even though she still found the strength to carry on... until today).

I simply have to write this down... 😢
My dearest D... I am going to miss you so much; I'll miss all your beautiful words, your dreams, and that unwavering optimism you held onto despite the sea of hardships surrounding you... It is difficult, and my heart aches... I love you deeply and sincerely...

It breaks my heart that things couldn't have turned out differently, and the tears won't stop falling knowing she has closed her eyes and moved on. I can only hope that those same eyes, which carried such sadness toward the end, are now shining brightly among the angels in eternal peace. May her soul find rest! She will remain in my thoughts forever...

Melissa Castillo said:I am seeking some counsel—is there any sort of special priority for cancer patients when waiting for an appointment with a primary care physician? It feels utterly unacceptable that someone whose immune system has been completely decimated by chemotherapy is expected to sit for hours in a waiting room, surrounded by a crowd of people coughing and sneezing directly toward them. To make matters worse, the doctors themselves seem to operate on a whim, calling the twentieth person in line instead of the fourth scheduled patient... it is truly absurd 😠 😠 😠

Regrettably, I suspect such a privilege does not exist, though it really ought to be implemented immediately given how marginalized oncology patients are in this regard. If I am not mistaken—and I could be, as I am not an expert on policy—those without private supplemental insurance often have to pay out of pocket for certain blood marker tests $28. At least, that is what my mother told me, and she has to go for blood work at least once a month; we were fortunate enough to have her supplemental coverage...

Regarding visits to the family doctor, the lines are so long that even my father, who is perfectly healthy, finds sitting there for an hour or two quite taxing, let alone my mother... It is far more practical for him to handle the appointments or coordinate via telephone, allowing us to avoid any contact between my mother and other ill patients.

As for the blood work, even when the referral is marked "urgent," the wait remains interminable, and the waiting rooms are always so crowded that we find ourselves forced to raise our voices just to ensure she is seen promptly. She could technically use the clinic at the oncology center, but that option is somewhat less appealing to her...

Ultimately, our greatest solace is that my father is by her side twenty-four hours a day; he is, unfortunately, the only one who can navigate the complexities of the medical information and fight tooth and nail for her medications, her chemo, and everything else this wretched disease brings... He encounters everything from those who simply shrug their shoulders and look away, to the few doctors who actually possess a genuine desire to help.

slyjackal38 said:My dear husband passed away on January 9th. It was absolutely devastating to have my phone ring at such an hour, receiving that call at 12:25 AM... If he were still with us, he would have celebrated his 53rd birthday today.
I want to thank you all for the advice and the support you've shown me.
Moving forward, I fully intend to remain active here, hoping to assist anyone else by sharing everything I have learned about this insidious disease over time...

It is truly tragic that he didn't get to see his birthday😢 Please accept my deepest condolences; just hold onto the belief that you will be reunited again, perhaps celebrating a much more beautiful birthday together with smiles on your faces...

brisksurfer said:Thank you so much!!!!!
I’m doing better... I realized that everything will just spiral out of control if we all sit here weeping, so I decided it was best to stay strong 👍

We went to pick up the results today... they found a new tumor on the bronchi plus one metastasis.
Nothing is certain yet because the report was sent to the maxillofacial surgery department where we've been seeing everyone so far... tomorrow we have to head over to Jordan to see what is actually happening...

I'll let everyone know how it goes. Sending love to all of you :* see you tomorrow!

That’s right, stay strong! Crying won't change the outcome; one simply has to remain rational in these circumstances and accept reality, as there is nothing to be done about it...

Before her last round of chemo, my mother said, "I used to think cancer was something you could just solve, but now I see it's become my new life"... Hang in there, everyone...

brisksurfer said:The doctor called us... with the worst kind of news... they found metastases in the lungs 🙂
We haven't told Dad anything yet... he has an appointment this Wednesday. They'll have to perform a biopsy first to confirm exactly what we're dealing with, and then comes the chemotherapy. I am utterly devastated, I simply don't know how I will cope 🙂

Don't lose hope, and please, try not to grieve just yet... pull yourself together and push those tears aside. The fight is still on, and you’re going to need every ounce of strength and that iron will to stay strong for your father...

Only two months ago, we were at home, enjoying a sense of perfect peace and living under the delusion that everything was fine. One PET/CT scan and a specialist's diagnosis changed everything in an instant. Twenty-four hours later, the verdict was in—a recurrence. Now it's more surgery and more rounds of chemo... But, life goes on. We move forward, perhaps a bit more courageous than before, and honestly, grateful that we didn't hesitate when it mattered most...

I am sending a massive dose of support your way, keeping you all in my thoughts as you face this battle... Don't let them win...

brisksurfer said:To my dear fellow forum members, I wish you nothing but the fulfillment of all your desires in this year of 2009! I shall be praying that you emerge victorious in all your battles this year...🙂

Tomorrow, my father undergoes his first CT scan following his surgery and radiation treatments... please join me in prayer that those bastards haven't returned...🙂

I am crossing my fingers that those bastards haven't come back!!!!!!!!!

shadowmason6 said:I truly hope this doesn't turn out to be just another glorified advertisement—I currently source my kombu and umeboshi plums (along with shiitake, tamari, miso, and several other items, mostly following the advice of a macrobiotic consultant) from Whole Foods markets. It would be quite refreshing if we had some stronger competition in that sector, given how steep the prices can be. Some items are stocked at Sprouts, and I haven't yet had the opportunity to check out the newly opened Garden...
I am uncertain exactly how much benefit a macrobiotic diet will provide, though I must admit, we are placing a significant amount of hope in it...
With that particular way of eating, shedding even a few pounds proves to be quite a challenge. A while back, a fellow forum member (whom I send my best to, 🙂) convinced me that the number on the scale isn't nearly as vital as the patient's overall condition, so we try not to fret excessively over it. My mother, however, insists on joking about her expanding waistline, while I find myself handing her my own trousers, which are already far too large for me...

By the way, thank you as well!

It isn't an ad, but it certainly helps regardless. Doctors are constantly questioning whether she is too thin, as they seem to view weight loss as an automatic indicator that something is wrong with her body. To be honest, I don't even know what to think or believe regarding her anymore... The patient's general well-being is undoubtedly the most important factor, and so we move forward with my mother with optimism and courage. Living means fighting... and that is a truth that holds steady, both for us and for our loved ones who are ill...

shadowmason6 said:Wishing everyone a happy New Year, along with plenty of strength and success in their fight against illness!

My mother finished her chemotherapy sessions toward the end of last year, and we are currently waiting for the first detailed screenings at the beginning of February (MRI, CT scans, and tumor markers)...
We are attempting to stay relaxed, though naturally, fear tends to linger within us... I find myself wondering why the oncologist scheduled the tests for two and a half months after the final chemo session... why not sooner? And, why not an immediate PET scan?...
Additionally, my mother lost about 4 to 6 pounds during chemo (where diarrhea was a persistent side effect). She hasn't regained any weight yet. It seems recovery isn't quite that straightforward. However, she feels relatively well—or at least, she tries very hard to project that image...
I believe I have already reached out to Nivija, so perhaps this recipe might assist someone else struggling with diarrhea, as we only recently discovered it. It appears to us that Kuzu powder (which is typically used as a thickener in cooking) can be helpful. Lately, I have been preparing a drink for her consisting of Kuzu and umeboshi plums, which is often recommended for strengthening the abdomen. These are ingredients from macrobiotic cuisine, but I have read that many mothers even use Kuzu to help stop diarrhea in infants...

Wishing you all the best as well; try not to let the fear settle in too deeply. Keep moving forward bravely!

Our oncologist mentioned to us that before a PET/CT, they find it difficult to send patients for imaging because they don't want to put them in a position where, besides the results potentially heightening the patient's anxiety, a misdiagnosis occurs. Essentially, besides the chemicals introduced into the body for the scan showing "spots" near malignant formations, those "spots" can also appear near fatty tissue. Please correct me if anyone here knows more... I also suspect there is a waiting period allowed for the body to begin recovering from the chemo so that more accurate results can be achieved...

Looking at my mother's case, I can say that this does happen. Fortunately, however, the oncologists acted promptly; she underwent surgery and we are now entering the second cycle of chemo, even though her immunity is weak and issues with neutrophils are resurfacing...

Regarding the weight concerns, a loss of 4 to 6 pounds is quite realistic, given that any prolonged treatment is an enormous shock to the system. Regaining weight will be difficult, but the most vital thing is that she maintains an appetite and that the weight doesn't continue to drop...

We aren't dealing with diarrhea at the moment, but I am curious as to where you source that drink and those plums?

Thank you for sharing your advice!

Grace Fowler said:Fellow warriors!!!!
Here we are, entering our second year together, though the story feels a bit different now; some are finding their footing while others are facing steeper climbs... Lately, my energy has completely deserted me—I've been battling a fever of 103 degrees for about ten days now—and naturally, my chemo and radiation treatments have been relegated to the background for a moment, but I suppose that is simply how it goes... The hardest part is seeing all the little ones running around the house when I can barely even open my mouth, though, thankfully, my nose isn't blocked so I can at least catch their scents... :-)

I wish you all a joyful evening, and if I may, let us attempt to leave all the sorrows and unpleasantries behind in 2008, so that as we enter November 2009, our hearts might be filled with happiness and light...

Wishing you nothing but the best, Grace Fowler

Dear Grace Fowler, Nancy Thomas18, and all you brave souls with such resilient spirits and wide embraces,
The old year is finally behind us, and as we step into this new one, we can say with absolute conviction: may this year prove better than the last, remembered for its bright moments and the significant strides we make in our fight against this illness... Whatever we failed to mend in the previous year, we shall strive to rectify in this one, humbly wishing for abundant health and the strength to find joy in every single day that unfolds before us...

Just as with everyone else here, our past year was a rollercoaster of highs and lows, but we refuse to yield, and we certainly will not back down from anything...

Last year, we entered 2008 with optimism, relieved that the cancer seemed absent and that things remained stable month after month. Yet, just when one expects a period of peace toward the end of the year, we find ourselves fighting this battle once again. My mother is counting the days, her only wish being for the chemotherapy to conclude as soon as possible, while our hope is simply that she remains resilient and recognizes her own strength at every turn. Recently, her immune system has dipped, and judging by the current lab results, it is not looking ideal. However, tonight she found a spark of joy, dancing a little, and it was truly wonderful to see her smile... We will do everything in our power to ensure that smile stays fixed through all of 2009...

Sending kisses, strength, and positive thoughts to you all; please, stay brave! The fight continues...

K.

Grace Fowler said:Greetings to all you brave souls!!!
Things are staying relatively steady on my end, which I suppose means I'm officially on my seventh day of Vepesid; I'm feeling a little drained and dealing with some nausea, though nothing too catastrophic...
I am looking forward to Christmas, even if I haven't been particularly active with the preparations, yet I feel just as much anticipation as if I were in peak physical condition. I hope you all remain as courageous as ever, and I am expecting... well, let's just say I expect we will all find ways to enjoy these upcoming days to whatever extent our circumstances allow...
Srdacan regards, Grace Fowler

I truly hope that we can all find equal enjoyment in these holiday days ahead of us, surrounded by positive energy and joy, while surrendering ourselves to pleasant gatherings with our loved ones...

Our situation is more or less similar to yours. It was quite a shock to see the cancer return and to face chemotherapy once again, especially since my mother nearly spent Christmas in the hospital. It is difficult to force a smile when everyone is lost in their own thoughts, but I am grateful she is fighting, and I believe that a wonderful Christmas lies ahead for us, just as it does for you...

Wishing everyone the very best, and we shall continue to fight on with smiles...