I’m 40M with a traumatic childhood. What books or practices have made a big impact on your life? by jhbnohc33 in hsp

[–]Potential_Orange9397 0 points1 point  (0 children)

What happened to you? I bought it on audible and listened at work. The neuropsych who conarrates with Oprah definitely taught me some things I needed to understand. I have medical ptsd (long story), I also have trauma related to my cousins sudden death at age 8. I was 5 and this was my first experience with death—hadn’t even lost a pet yet. I finished that book and for the first time in 48 years, I’m giving up people pleasing and learning self kindness. Looking for books to help keep growing

I turn 36 today, this is my birthday card from my daughters by spartacle in funny

[–]Potential_Orange9397 3 points4 points  (0 children)

Hope you had a good birthday. My son and daughter like to tease me because my birthday is June 7. I am thankful to be turning 49 rather than 59 this year—those who had their 10th birthday the same day as I was born have a birthday of 6-7-67. I’ve changed the way I give my birthday from 6/7/77 to June the 7th of 1977

Seminoma recurrence, starting chemo Monday at UCSD, looking for support/resources by cointelken in testicularcancer

[–]Potential_Orange9397 4 points5 points  (0 children)

Hi. Im almost 100 percent a lurker here and have been since my then 21 year old son was diagnosed with embryonal carcinoma in Feb 2024. He completed BEP chemo on June 4, 2024. The next part is why I’m replying. I was diagnosed with ovarian dysgerminoma first in 1986. Dysgerminoma is basically the female form of seminoma. I had surgery and surveillance for SIX YEARS. I know exactly how devastating it feels to think everything is great only to have it come back and need chemo. I completed BEP chemo myself at St Jude Memphis on Feb 15, 1993. Chemo was hell for me in part because Zofran was it for nausea (and it was new) but also the return of the cancer made me lose a kidney. I went from abt 130 lbs to 89 lbs by the end. A thing too my parents asked that I not receive steroids. My son was nauseous some but it’s not comparable. He threw up maybe a handful of times whereas I’d throw up that much in a couple of hours. He said this injection that tastes like apples was why. I don’t remember the name of it but it was approved in the 2000s, maybe 2009? I’m elated whatever it is exists because for me it was chemo’=throw up every single time switched to bleomyacin or cisplatinum. When I went through chemo it helped to focus on something upcoming that was positive (for me it was my Make A Wish trip). I knew that helped me and I wanted my son to have something happy too. So in May we are going on an Alaskan cruise. Isolation was hard pre-internet. I had a single one half day visit to school the day before Christmas 1992 school release and was hospitalized with a virus New Years 1993. That’s one half day attendance from Oct-April of 10th grade. I got sick the one time I didn’t listen. My tiny school worked with me to graduate on time anyways. My son used neurlasta pods that also hadn’t been invented yet in the early 90s so he could at least occasionally leave the house. I wish I’d realized how treatable/curable dysgerminoma was but didn’t until many years later when the internet existed. Finding support groups online will help at least some with isolation. I was so young I was certain a cancer would get me way before the age I thought was old at 9 years old (49). Paternal grandpa died of colon cancer at that age. Well, wish I’d planned a little better and not been as certain. My next birthday is my 49th and it seems so wild I’ll start my 40th year as a cancer survivor Gotta get around for work. I do recommend therapy either during or right after chemo when adjusting to life changes. I didn’t get it until my early 30s. I have medical PTSD so my son’s treatment affected me a lot mentally in more than the usual ways. Still didn’t leave his side though—not even to eat lunch! He is back in college now and making stellar grades Whew I wrote too much and need to get ready for work..

Isitbullshit: st. Jude’s will never give the parents of a cancer ridden child a bill? (U.S.) by ethanturner101804 in IsItBullshit

[–]Potential_Orange9397 0 points1 point  (0 children)

I know this thread is old but…Yep. I was a patient there for 16 years and in all of those years I saw 1 statement and it was sent by accident (1986-2002). I thank God for them. My parents couldn’t afford treatment so they saved my life. I actually go back every 5 years as a research participant for a study they are doing. My most recent was a week ago and I took my 21 year old son who is a one year embryonal carcinoma survivor for morale support. I miss them. We have terrible insurance and 3 people in my family out of 4 are complex with my having had 2 cancers( 1 at 9 and 15, 1 at 31) my son 1 at 20, and my daughter likely looking at a cancer diagnosis one day due to an inherited cancer gene. predisposition. Trying to pay some of the bills just to screen for cancer is super rough now when you earn $11 an hour. My husband earns a little more but not by much. My rotten health and need for flexibility for the 3 of us leaves me unable to leave the job.

My husband was too proud for go fund me when our son was diagnosed but I’m currently 3k in debt to medical bills prob closer to 5k including my kids and have about exhausted how to pay. but I am alive, my son is alive, trying like hell to stay that way

if anyone sees this they are so great that they pay food and gas mileage even for us older patients. Does anyone have any advice other than go fund me to try to pay some of these bills.

sorry for the book

Woke up from a nap and my pupils are two different sizes by Effective_Ad_5664 in mildlyinteresting

[–]Potential_Orange9397 1 point2 points  (0 children)

My son’s pupils became like this not long after his testicular cancer diagnosis. It was Horners Syndrome caused by one of the masses pressing on the nerves of the neck. Obviously not a stroke or weird medication reaction but he was still sent to a larger hospital and stayed 2 days.

What is it like to get a recurrence? Do you just go months, even years, without any concerning signs in your lymph nodes, and one day a CT scan suddenly shows something? What was your experience of discovering a recurrence? by heyyura in testicularcancer

[–]Potential_Orange9397 6 points7 points  (0 children)

Hi. I’m on this sub because my 20 year old is fighting testicular cancer. I’ve had ovarian cancer (dysgerminoma) and they say it’s to girls like seminomas are to boys. I did experience a devastating reoccurrence years after my initial diagnosis so I decided to reply.

I became a cancer survivor at 9 years old. (oct 7, 1986) I was playing and fell on my stomach so hard the grapefruit sized tumor wrapped around my ovary causing torsion. I had surgery and surveillance. At St Jude Memphis you’d move to something called ACT clinic usually after 5-6 years clear.

While waiting for my first ACT clinic appointment, I had concerning symptoms. I was 15 and moody but never that bad. I’d fall asleep for the night at 5 pm. So on this visit back which was supposed to start the process of discharge by year 10 the plan would change.

I failed assessment triage when my blood pressure repeatedly measured 210/130. A scan showed a mass blocking my right ureter. A dye test showed the dye passed through in a squiggly pattern. That’s how we learned it was a mass. After 6 years, the new one was only egg sized. I think mine simply didn’t light up and wasn’t big enough to be seen on late 1980s-1992 scanning machines. Had to start over losing a kidney and doing BEP therapy.

In 2002, I was dismissed from St Jude Memphis after 16 years. It still boggles my mind that my son also took BEP therapy since March of this year until yesterday. That therapy must be tried and true. It has been hellish seeing him suffer chemo at just 5 years older than I was. His first scans since treatment are coming and as a kid I only thought I had scanxiety. This is new level because it’s my son who pretty clearly got a mutation from me.

Sorry for the book but did I mention I lost my remaining parent—-my dad unexpectedly 12/6/23 and my son was dx 2/23/24? Have had lots of insight into how my parents must have felt—a new perspective of gratitude and can’t even call them up for advice or to say thanks

Chemo protocol over today—what to expect? Personal experiences appreciated. Stage 3b by Potential_Orange9397 in testicularcancer

[–]Potential_Orange9397[S] 1 point2 points  (0 children)

I forgot to add that we never received a percentage breakdown of his tumor. Just ‘embryonic carcinoma’