I have not posted in a while, and it is because of cancer, but not mine. My kid brother, 60 years old, collapsed on January 25th and went to the emergency room. A CT scan illuminated a grapefruit-size mass in the area of his right frontal lobe, and he was transferred to Jefferson in Philly. He had an emergency craniotomy, and tragically he has a grade 4 Glioblastoma. The frontal lobe is involved in motor function, problem solving, spontaneity, memory, language, initiation, judgment, and impulse control. His behavior and judgment have been bizarre for an undetermined period of time, but he made a mess. He has an alcoholic wife, an autistic child, a house in foreclosure, and a host of other financial problems. He insisted he paid his insurance premium online, but he did not. I appealed to the highest level of the multi-billion dollar insurance company, and, believe it or not, got them to reinstate the policy about 30 days after it lapsed. This is a case of corporate leaders taking the time to listen, consider the circumstances, looking at the online activity of his account, and doing the right thing, even though they will get very little premium revenue compared to the payout. (you don’t hear a lot of stories like this) His 22-year-old autistic child is in a wonderful group home with state and county funding for life. I have negotiated a stable situation for his home for 18 months and managed a strategy for his creditors.
I am on this board because I have advanced prostate cancer 2 years and 9 months. It is 4 months that I have neglected my self-care. Many good habits have disappeared. Exercise and diet are the most easily identifiable, but the amount of space his problems take up in my head are an enormous distraction. I am amazed at how quickly muscles have atrophied. At the beginning of last week, I couldn’t do a single traditional pushup. That is astounding since I have been fit and strong for my entire life.
I did a guided meditation recently where the theme was “if you keep saying Yes to everyone else, then you are often saying No to yourself.” I don't regret stepping up to the plate for a family member, I love. However, there are consequences. I think I will make a good comeback. Perhaps not all the way, but close.
I missed the good informational support, the warmth of a community of people that selflessly take the time to provide support to so many of us, and the camaraderie of interaction with fellow warriors.
I am back.
Just Saying,
Philly
Written by
Philly13
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Wow- you are a model brother! Too often, brothers behave more like the biblical ones. I don't know about your guided meditation - to me, helping others, and especially our loved ones is what makes life worth living, and part of our quality of life is being able to live with oneself based on the way we have acted. Sometimes, some self-sacrifice is the right thing to do. As Hillel said, ""If I am not for myself, who will be for me? But if I am only for myself, what am I? If not now, when?"
Thanks. The way you articulated it is the way I feel. I could not have put it in that perspective myself, but I am proud that the people I love know they can count on me in tough times as well as the good times.
Thanks for sharing. I often find that when helping others I am also helping myself at the same time.
But I think the key to that is not to help others at the expense of yourself, especially when you need care too. I hope you can get back on track to prioritizing your own care now.
We are here to help and support you in that effort.
I think meditation is a good thing to really get in touch with what's going inside, not just the cancer. I find that there are a lot of other things going on inside with this disease.
Feel free to share more if you are comfortable with that.
Holy Cow! I can imagine a little what you are going through. In 1992 My brother in-law had a brain tumour Grade 4 Glioblastoma too and we moved to help my sister and her two young kids. My BIL wanted to stay at home so that was an incredible challenge. To this day my niece and nephew , now in their thirties thank us for our consistent support. My husband and I were there through it all but our marriage struggled therefore strengthen because we gave 200%. Helping others is so important but check in with your gut often to see if you have enough left for your well being. To be effective and present you have to take the “oxygen mask first “. Meditation is a wonderful tool to listen to your own wisdom- keep that up.
Your brother is so blessed to have you ! The grace and kindness you have given is extraordinary! What you figured out for him is amazing. You can only do the next right thing . Find support for all of you- people really want to help but they don’t know what you need unless you ask specifically for support. So have a mental list so when someone offers help you can say .. thanks for the offer and we need someone to walk the dog, get groceries etc...
Please let us know how you cope and continue to take good care of yourself.
So touched and inspired by your story. The kindness and love we share is never wasted and plants seeds we may never see grow.
During my husband's illness I got so tired of people telling me how lucky he was to have me - as I felt they missed the point entirely - the reality was that I was the lucky one. It was truly an honor and a privilege to know him, love him and care for him.
Sounds like you feel the same about your brother.
Sending you light and holding you close in my prayers.
So sorry to hear of all the family issues, you are a very giving and caring person that steps up and does the right thing, I applaud you for that. Just get back to your diet and exercise plan, you can come back with time, God bless you and your family.
Good to have you back Philly, cannot imagine what you went through. Your sacrifices were, in these instances, the right thing to do. There is no doubt you will be back to your healthy regimen of diet and exercise. Wishing you a speedy return.
What goes around, comes around. Wishing you all the best originating from your loving efforts.
Selfishness is something that the world needs a lot less of.
You have demonstrated how big your heart is and that you are indeed, a great asset to those around you.
It is time to take inventory and make sure (as best you can) that the one who has provided support, gets the focus needed to continue to be there for others.
It is a balancing act - take care of yourself - for the sake of the others, so you can continue to be the gift that you are ....
Well you're in the right city... Brotherly Love... My bro has been a DH (not Designated Hitter) all his life, so if YOU were my brother and with my wife's permission... I would marry you.... God has a special place for you.....As far as a push up is concerned, mine are easier to do since I now have big tits.... As soon as my tits hit the floor (before my stomach does) I count that as a completed push up...Now's the time to take care of yourself.... Have fun and don't forget to laugh....
My deep appreciation to you, Philly! I can share your example with my son, as his young mind develops a moral compass, growth towards compassion and the deeply-rooted bonds of brotherly love, instead of perennial competition. May you both be as well as can be. Welcome back!
Philly o Philly13 , you are a great great brother . Fantastic job helping out . I was once unable to do a push up too . You can get stronger . Now it’s time for you to eat well and exercise more and consentrate on your health. Great job big brother!😎
Thanks so much for all the kind words. It feels a little awkward to have made this about me. When I started the post, my thought was to make a point about how quickly atrophy occurs when undergoing ADT, and how important good habits are for feeling better while battling Pca with potent treatment regimens that have toxic properties. Once I got started talking about why I lost discipline with practices I adopted within a week of diagnosis, the words poured out.
It takes time to see good habits pay off, but the benefits fade quickly for me when I don't eat well or exercise. Sleep is something that I have struggled with throughout my life. We talk about the quality of life all the time. For me, exercise, enough sleep, and a plant-based diet are a vital part of maintaining decent quality of life despite the hot flashes and lack of energy. I always feel better after a workout, no matter how hard it is to get started. Always.
There are many stories to go along with the last 4 months, but I can't afford to pay all of you for therapy. I will mention one that might be interesting and, perhaps, relevant to Pca. The diagnosis and prognosis were the most horrific we could have imagined after the emergency surgery. We looked for clinical trials and the kind of treatment options that are available for other cancers, like Pca. Glioblastoma doesn't have many options, and benefits are typically measured in months of median survival. Jefferson offered the Optune that estoud mentioned. The patients head is shaved, and they wear a cap containg contacts that deliver tumor treating fields. You need to wear the cap with the delivery system for 18 hours a day. We signed up for it, but ended up being accepted by Duke Cancer Center for what we considered to be a more promising trial making a vaccine utilizing the patients blood to make antibodies. I went to high school with a research doctor working for a company that is developing this. The vaccine is created from White Blood Cells, which are removed through a process called leukapheresis which has to take place before the first course of chemo and radiation.
We were supposed to go to Durham Monday of this week, then start the vaccine process 14 days later.
The closer we got to traveling to Duke to begin the final evaluation, the more his oncologist became concerned about the need for my brother (and me) to have to get to Durham from Philly so often in the next six months because of COVID. He is very high risk, and I am on the upper side of the vulnerability continuum. She went to the hospital review board and got permission to unblind his status. Unfortunately, she found out that he was in the 30% Placebo group, and we decided to end his participation. While hearing that was a gut punch and removed something we were hopeful about, even though we knew the risks of placebo and failure of the trial, we are grateful that she cared enough to do this. As we all know, hope and optimism are excellent weapons for the battle against disease.
It would have been awful to find out after ten or so trips to Durham in the next five months that he had been getting injections of sugar water. She said that she couldn't live with the idea that he might get COVID during one of the many trips while he was taking large doses of Temodar chemotherapy for 21 out of 28 days. I think this Doctor and hospital put their patient's needs first, ahead of the randomized study. She called me at 4:30 PM the Friday night before Memorial Day. We were going to leave early Monday for the 450-mile drive.
I spoke to my long-time friend at the developing company, and he supported the Doctor's actions and the decision not to go forward in the strongest possible terms. He mentioned that there are several trials that are casualties of the pandemic. This one is ongoing, and we were the only ones “unblinded.” I am told this trial, called ACT II, is continuing, for now.
There are enough reason to curse the pandemic without this one. I hadn’t considered how the pandemic might be slowing down these important studies.
The consequences of the pandemic, and then the consequences of the consequences all suck.
That will be the last mention of my personal "stuff" that is not directly related to Pca.
Personally , I appreciate people sharing their truths. It’s kind of what we do here. We can relate to another guy in the same trap . Thank you for replying. I’m sorry about your brother. My brother Mike May he Rest In Peace , passed about a year ago at 63. He retired a year prior from the uspo.. but he was a self abusive guy and had destroyed his heart with a life time of abuse .. Take care
No, I became the the one that could not back down from a challenge . Had to prove myself .A bit of a rable rouser. I was a crazy teen for sure. But later helped my brothers out as much as I could as adults. Your comment was a little homophobic . If I didn’t know you better Checky Green !
I remember the” good humor” truck rolling down our street when i was 4.. In the hot Virginia summer that music was heaven to every kids ears...😂humor me?
That song is one of my favorites. Partially for ironic reasons. He is heavy. Literally and figuratively (290). Thanks for your unique approach to everything.
Philly
Hey Philly, have you seen the Jim
Carrey movie” yes man”? If not check it out . Gives a different spin to saying “ yes” Great post by the way . 😎
My 42 year old brother was diagnosed in late December 2019 with stage 4 glioblastoma. Roughly 20% of his brain was tumor. Everything I'm going to tell you is the truth. I'm a normal guy - highly educated but average. We found a drug called fenbendazole and have been giving it to him 5 months. He had a scan 2 weeks ago and the unshrinkable tumor was reduced by half. My brother is also on chemo - Temadar(which is standard protocol). Our neuro oncologist assured us when he sent my brother home to die in early January that the chemo might add a month or two to his life, but would not shrink the tumor. I've been researching this class of drugs for months(anti parasitic) and there is primary literature from John's hopkins and AJMA. What I'd call a wealth of information. There is a guy named Joe Tippens who sort of broke this story. This medication is available everywhere. Many of us have used it on our pets. It works VERY well on prostrate, bone, pancreatic, throat and brain cancers. In the literature they end up admitting "the mechanism by which this works, isn't yet understood". If you research for yourself, good chance you save your own or brothers life. When diagnosed my brother couldn't talk, walk and was going to the bathroom any and all the time. Today, he watched tv and ate and is cognitive and happy. No BS. I've witnessed a miracle. I'll check this in a couple days, and if you respond we can talk
That is wonderful news for your family. It has been discussed on the site many times. I will look for the information you refer to and read about before getting excited.
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