Susie B.

Susie B.
About Susie B.

Craig and I were high school sweethearts. My heart went pitter patter and I couldn’t catch my breath every time I saw him. I thought that he was the cutest guy that ever walked on this earth .We just celebrated our 35th Anniversary and have 3 kids and 3 grandkids who are the light of our lives.

9 Months ago, after answering the phone , my heart started pounding and I couldn’t catch my breath. It was Craig’s doctors office calling with the results of his biopsy. It was a very aggressive, fast growing Gleason 9 Prostate Cancer involving most of his prostate. They asked me to tell Craig when he got home from work. I cried uncontrollably and couldn’t catch my breath all day.

It was so difficult telling him. It caught us both off guard. We thought, how can this be. His PSA was only 1.5 and anything under 4 is considered normal.The only reason he went to the doctor is because he was up peeing 5 times a night. He blamed that on being 60 years old. He said “most men my age have swollen prostates and besides that my PSA is normal.”

We immediately made an appointment with the top Urology Surgeon at the Cleveland Clinic. He told us that 30% of Prostate Cancers don’t cause a rise in PSA. He said that ” a yearly digital rectal exam is imperative”. How did we not know that? I think most people don’t know that. We had done a little research and came prepared with questions. We asked if a nerve sparing procedure could be done to preserve penile function. The doctor snapped “Do you want to have an erection or do you want to live?” “Of course I want to live ” answered Craig. He was scheduled for a Radical Prostatectomy on June 4th.

Craig was always in excellent health. He never had surgery, was not on any medication, and ran 5 miles a day. Over the next week, he had a barrage of tests- Pelvic and Abdominal cat scans, and whole body bone scans as well as blood tests. He had to do bowel preps and take antibiotics. It was all so new to him and terrifying. I tried to be supportive and not show that I was terrified too,

The 6 hour surgery went well. He was in the hospital for 3 days, and I never left his side.He went home with the Foley Catheter still in place for an additional 10 days.I made a bedroom in the Family room for him, and i slept on the couch in the living room. He needed the catheter drained and cleaned, and his incisions cleaned and redressed, He needed medications around the clock, and proper food on his restricted diet.I took a leave of absence from work and was glad to be able to do all of this.

A week later, he developed gout in his foot from the stress of surgery. He had never had it before. It was so painful that he couldn’t walk, and at night it throbbed and he couldn’t sleep. I called a foot surgeon and begged that they see him that day. He gave Craig oral steroids, and eventually a steroid shot to clear it up.

At the end of June, we received news that Craig’s Aunt Kay had pancreatic cancer and only weeks to live. Craig was feeling better, and on July 1st we made the 2 hour drive to Columbus to see her. Just as we arrived in town, Craig noticed his leg was swollen and discolored. He called his surgeon just as we were pulling up to Aunt Kay’s door. He told us to get to the Emergency Room. We ran in and hugged Aunt Kay and left. (We never saw her again. She died one week later) We went to the James Cancer Center at OSU hospital. They immediately did an ultrasound doppler and found a large blood clot in his femoral artery in his groin. A barrage of healthcare worker flooded the ER room , and simultaneously did IV’s , and cardiac ultrasound, and gave blood thinners, and admitted him. We were terrified again. After a few days, he was discharged with a large box of blood thinner shots, and instructed to give himself a shot twice a day. “I can’t do that” he exclaimed. With my coaching and help, he was able to do it.

A week later, he developed severe pressure on one side of his head. Once again his surgeon said” get to the Emergency room, you may have a brain bleed from the blood thinners” We were terrified again. They did cat scans, x-rays, and blood work. Thank God. it was not a brain bleed.

The Pathology reports came back, and said that 95% of his prostate was Gleason 9 cancer as well as the seminole vesicles, nerve branch on one side, and bladder neck.. 66% of the margins were positive. All lymph nodes were negative. Craig would need radiation to kill the remaining cancer in that area.

We went to a Radiation Oncologist. In preparation for the radiation, he did a pelvic car scan and tattooed Craig in 3 places to line up the radiation beam in the right spot every time. One day before radiation was to begin, his Oncologist called and said “On closer inspection of the cat scan, I noticed an enlarged lymph node by your rectum” He said that he “would not start radiation until Craig had a Colonoscopy with a lymph node biopsy.” He referred us to a gastroenterologist , and the procedure was scheduled for the next week. Again, we were terrified. and again Craig had to do bowel preps and antibiotics. The procedure took longer than expected, and the doctor said it was difficult. But his colon looked fine, and after a few days, the biopsy came back normal.

Craig was cleared to start the 7 weeks of radiation every day Monday through Friday. The treatments themselves weren’t bad, but the collateral damage and irritation to his bladder and rectum caused horrible side effects. He had loose uncontrollable bowel movements that came without much warning. He was back to work and driving 200 miles a day. He had to strategically plan bathroom stops, and when it happened unexpectedly , he had to pull off the road and go wherever he could. He once, ran to a porta- potty he spotted on Amish farm land. He was now up 10 times a night peeing, and he felt fatigued and sick from the radiation.

In addition to radiation, he has to do 6 months of Hormone therapy. He had to go to a hematologist, who gave him shots to completely stop all testosterone production. He was thrown into “Male Menopause” complete with terrible hot flashes. “The lack of testosterone , shuts down the cancer growth or puts it to sleep”, the Doctor said. It also shuts down Craig’s metabolism. It causes muscle loss, hair loss, and emotional changes. The muscles in his once muscular Quarterback body have shrunk, and his full head of brown hair has thinned. I’ve only seen him cry once in our 35 year marriage, and now he cries almost daily at anything and everything. (even puppy dog commercials) .

Occasionally Craig tears up and says “they took my manhood away from me in every way possible” I am tearing up now as I write this. I try to be supportive, but all the while I am crying inside. I miss the carefree laughter and fun. I miss the intimacy in the bedroom, and feeling his touch and warm body against mine. I miss the man who’s always been my rock in hard times.  I’m so happy he’s still here, but yet I’m grieving and miss the way we were.  I can’t help but fear for the future. He has scans in May to determine if it all worked. I pray constantly.

Craig is my one great Love, and I would do anything for him. For me, the hardest part about being a caregiver is the emotional part.  I try to stay positive and upbeat.  He’s been through a lot.

As a side note, I want to stand on the rooftops and shout out to Men to get a digital rectal exam yearly, and not just rely on the PSA. It could save your life Also, the picture I submitted was a week before surgery. We were at a Jimmy Buffet concert.  He says -“the last time I felt normal”.

Thanks for listening.

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