We are now a cancer family

Those of you who are bored by long posts might want to skip this one.

Four years ago this week I got the call, "you have cancer... it's aggressive". What a relief! Finally a doctor has found something that can be treated. The rest of July was spent packing up the last of our home of 33 years and I drove a uHaul truck to our retirement home in Florida, then flew back to Ohio four days before the prostatectomy. The surgeon said it was worse than expected. Since my prior urologist had never even mentioned anything about cancer, I joined that other prostate cancer forum, but didn't have much time to study.

As soon as I could drive after RP, we officially moved. And six weeks later took my wife to the ER in Tampa, where she was diagnosed with stage 4 primary bone spinal lymphoma. I was trying to juggle my PT sessions with a Kegel coach and driving my wife to her infusions, which lasted all day. Eventually I had the AUS surgery, which was a disaster. I began to journal our adventures in a blog named CancerCoupleBlog.

Ten years ago today was the last time I saw my brother. We were visiting Mom in the hospital, and we almost had dinner together that night. I wish we had. He had recently completed chemo for CLL leukemia and seemed to have beaten it. Ten days later he was gone, from a massive cerebral hemorrhage.

Four months ago our older son was admitted to a Manhattan hospital and diagnosed with acute T-cell leukemia. NYC had its first case of COVID. He was hospitalized for the entire month, as the pandemic exploded. Since then he has been getting weekly outpatient chemo amid the street riots, and is now awaiting a bone marrow transplant... which will require another full month in the hospital.

This past Monday our younger son had a small bowel resection. He'd had symptoms of an obstruction for several months and had lost 30 lbs. (Fourth anniversary of my fusion biopsy BTW, also same type surgery I just had about 18 months ago). Anyway, yesterday he informed us that the surgeon said it looked like cancer, with lymph node involvement. We won't have the path report for a few more days. He sounds good. He said we are now a cancer family.

We'd love to see either one of our boys... okay, men, in their thirties. But because of COVID and with Florida being the new "hot spot" it's really messed things up. The older one, with T-ALL is fully immune-compromised. And our younger son has his wedding planned for next Friday, July 10th (same day my brother died). We are hoping he will still be able to go thru with. We had already paid for airfare and a week at the beach for their honeymoon.

The year is only half over, and two new cancers in just four months. 2020 can't end soon enough.

Shydt, Rob. Too much bad luck, :-( but keep the faith. Praying and hoping for better times!

Wishing you and your family all the very best!

Djin

Oy is the first word that comes to mind. Praying for some comfort for your family ahead.

RobLee.
Never, ever bored by your posts. That' s quite a full plate of cancer, darn it it all, for you and you family. Just know I am here praying for you ,supporting you here, because we are all in this together. Also know that with each member of your family affected, each of you can truly feel for the others in no other way possible if you did not have cancer yourself. Be strong together. Praying for healing, praying that your son does get to say "'I do" Friday, and he and his wife and your family will be blessed.
Bowel obstruction, this also quite shockingly just recently hit us , as we almost just lost our 40 year old "boy" (they will always be boys to us). Only thru a rushed visit to the ER he was saved. But now, since he has no insurance and tells us not to worry(even though he lost 30 pounds thru this in the past three weeks) I am concerned about the root cause and the prognosis for his future.
We need to celebrate our undetectableness of our PCa currently, and keep hope alive, and keep the faith! Be strong for them.
Wings aka Dan

Post Edited (Wings of Eagles) : 7/2/2020 4:26:36 PM (GMT-6)

Mindful of you and your family ...

A cancer diagnosis can be a tough road to travel ...

Stay strong, stay determined ... and we are here to stand alongside you.

Treatments bring HOPE ... hang on tightly to that ... HOPE.

Treatments have helped me these past seven years, since diagnosis.

Starting out on treatments, others shared HOPE with me. They were handing me that lifeline.

This evening, I pass that lifeline along to you, as they once did for me.

We all need encouragement along the way, and I am sending you and your family my encouragement.

Caring thoughts, from across the miles,
Cyclone --- # Iowa State University

Rob, I am so so sorry to hear of the news of you and your family. 2020 will be a year all of us will want to forget real soon but man in your case it can't come soon enough! I hope and pray that you will be able to get to see your sons soon and be able to strengthen and comfort each other as you battle these health issues. Anytime you need to come here and vent or need a little reassuring please do so!

Larry

Wow. No words. Prayers for you and your family.

Donna.

Thank you everyone for your kind words. Logos, your wording was sublime. Sorry that I cannot respond to each of you individually.

The path report is in. Small bowel adenocarcinoma, stage T3 N1. Only one of 21 lymph nodes was involved, and they say the higher the ratio of sampled-to-positive the better the prognosis. SBA is so rare that 2020 is the first year that NCCN has actually published clinical guidelines. It is even more rare to find it in the ileum. His surgeon said if he'd been ten years older that he would have an ostomy.

Prior to the newly published guidelines, most treatments were based upon those used for the more common CRC, and much of the research I've uncovered focuses on the differences between SBA and CRC. He has not yet met his oncologist, but his treatment will likely be six months of 5FU and/or FOLFOX and such. His age (32) is an advantage but the survival statistics are cited as percentages at 5 years.

Our older son called last night. He has been readmitted to Weill Cornell. Apparently he has taken a turn, but he is still optimistic about getting the bone marrow transplant. But it is looking more and more unlikely that we will get to be together with him before all this is over, sometime next year.

TBH this is starting to get to me. Fortunately I've been on venlafaxine for several years now. The depression finally began to subside about a year ago. My next PSA & T is in a few weeks, and I'm more concerned about holding it together while talking with my Uro than I am about the lab results.

Thanks again everyone for your replies.

Rob, what Gary said. We’ll be thinking of you and with you in spirit through all of this. Please keep us posted.

Rob, I’m sorry to hear. I’m not good at this, so I’ll just say it. What a bunch of ********.

Hang in there sounds trite. We’re with you brother.

Dave

CANCER FAMILY UPDATE:
We were finally able to see both of our sons earlier this month. The older one, the one with leukemia, had successfully completed an anonymous donor bone marrow transplant last fall and was given his COVID vaccination as part of a clinical trial. He flew down from NYC to Tampa and stayed with us for a week, slept much of the time (we knew he must have been exhausted) then we drove up to Charleston where we met up with our younger son (small bowel cancer) and his wife for my sister's younger son's re-marriage. The wedding actually took place a year ago, but the state was locked down and they still wanted to have a big wedding with everyone present, so they had it this year. As we've all had our vaccinations, no one wore masks and the event was outdoors with beautiful weather. We also got to visit historic Charleston and tour Savannah while were on the road. Needless to say, it was somewhat stressful for the driver (me) but it was good to get away.

I don't remember if I'd mentioned this before, but my wife's lymphoma is in back. They don't know if it's an actual recurrence or if she'd had follicular lymphoma (NHFL) all along but was masked by her DLBCL. Also my efforts to find a new urologist sort of fell thru last winter. The AUS is still problematic, but I've determined that I will not see that surgeon again. We'll see what happens. In the meantime, I have a new orthopedic surgeon - my fourth, who believes he can fix my right arm, which I will need if and when I finally get my left leg fixed. Long story. All of these "life altering events" occurred around the same time, and just when I think I've got one resolved, another pops up.

I don't spend much time in prostate forums anymore. I am fortunate to still have undetectable PSA after five years, and the less time I spend thinking about the past, the better off I am emotionally. But I've been spending more time in other cancer forums. Now that both of my sons are in remission I guess I may lose another hobby. Just as well, as I will be unable to type after the surgery next Thursday, which will immobilize my right arm for a few weeks. Ugh. Will be learning to brush my teeth left handed, and who knows what all else. This will be my seventeenth surgery, so I'm not particularly apprehensive about the surgery itself, just the recovery.

Keep up the good fight everyone. Hope to be back eventually, God willing.

Rob, you and your family have been tossed lots of curved balls, and you've been handling them quite well. Keep fighting, my friend.