During this whirlwind 2 months since diagnosis I’ve concentrated on what I have been through, how I feel, my fears and concerns, the unknown path. My fellow traveler, Dan, wrote the open letter to cancer patients (see post below from Jan 5). My wife has also been cataloging this journey on her blog site: TheLetsTalkMom.com. Most recently, she wrote about her feelings and observations from the day of the surgery. You can see all her postings on her blog, (please note her blog also contains photos of pre, during and post surgery & is graphic) but I’d like to share with you here her feelings from the day of my surgery:
January 14, 2016
3:45am the alarm clock sounds. It’s the morning of the surgery. As much as Phillip is at peace right now I am a walking ball of nerves. I’m trying to put on a serene, happy face for him but inside I’m hit with waves of nausea as we prepare to head into the City. I still can’t get my head around the speed with which we found out the news just a few weeks ago and now my husband was about to lose a body part.
This cancer has been referred to as a “couple’s ailment.” The outcome will affect both of us. Following a successful surgery & recovery, rehabilitation of urinary & sexual function will take place. How many nerves can be spared? All, some, half, none? Then depending on the pathology results we receive in 10 days, protocol for radiation and chemo/HRT will be determined. The surgery is part 1 of a 3-part process.
With that said, we still need to get through today. 3:45am Phillip takes the 2nd of a special shower with Hibiclens – an antibacterial soap to protect his body from infection. The car service arrives at 4:50am. Thank you again, Shawn & Bita of Vitesse Worldwide, and for the return trip home when that day came.
Phillip was pretty chipper in the car as we held hands and made small talk. It was dark and cold and started to snow. When the car swung into the hospital’s drop-off area, we stepped out into the cold and looked at the huge sign before us. Cancer Center. Phillip turned to me. My ever-strong-rock whispered to me, “Why are we here? I can’t believe we are here.” He looked pale and I knew he was just trying to be strong for me all the time but inside he must be reeling. My heart ached for him and I wanted to burst into tears. But I put my hand in his hand and told him all would be well. I prayed to God quietly on the way inside.
I still felt nauseous. The greeters were very kind and took us to the 3rd floor where we were met by more very pleasant people. Phillip signed in as I stood silently behind him, tears rolling down my face. The woman came from around the desk and hugged me tightly. Everyone from start to finish at Sloan was incredibly nice.
Sloan Kettering’s new hospital just opened January 1st, 2016. Each patient, nurse, caregiver & visitor has a color-coded tracker. It lets the family member know where the patient is on a large electronic board like an airport flight board – pre-op, in surgery, surgery finished, recovery room, etc. It lets the hospital know exactly where the family members are in the hospital at any time. And whenever the nurse walks into the room, his/her name & title appears on the monitor directly in front of the bed announcing: Sue Smith, head nurse has entered your room.
Phillip is only the 11th patient in this room. Everything is so modern and beautiful and futuristic.
After pre-op procedures are taken care of and the “what if” papers are signed – Health Care Proxy – in case things don’t go as expected and decisions have to be made, God forbid, Phillip was ready for the OR. He kissed me gently and said, “I love you,” as the elevator door shut and the wait began.
I thought I could do this on my own, but I found out that I couldn’t. I was looking out of the huge window and it was still dark outside. I saw my reflection and he was no longer next to me. I burst into tears and called my friend, Jade Albert, who was on standby in case I fell apart. She said she’d be right there. Would take her 30 minutes to get across town but she was on her way. Then I called my sister and Pastor Jackie. That helped a lot. A very kind cleaning lady found me upset and gave me a ton of hugs and a box of tissues. Sloan Kettering’s tissue boxes are Tiffany colored. We laughed about that and it lifted my spirits. She was such a nice woman! She checked on me during different hours when she was back on that floor.
My husband was in surgery for over 6.5 hours. Phillip had asked the medical team to pray before they knocked him out. They all immediately swooped around him as he asked God to protect them & guide them as they healed him. He said the experience was really overwhelming and he was so touched. Phillip described the bright lights of the sterile operating room & the hectic preparations underway to stay on schedule and when it was announced that this patient had requested prayer before surgery on the paperwork, he said everything suddenly came to a halt and he was surrounded by great people who bowed their heads in silence as he prayed for them. His eyes well up when he describes this beautiful moment. Later in recovery, one of the doctors said they had never done that before & that everyone said how much they liked it & he hoped they will do that more in the future.
I later found out the operating table is tilted and the surgery involves 6 incisions and a drainage tube. I spent much of my time pacing back to the large electronic board hoping to see the green check mark under Surgery Finished.
When it finally blinked into its square, I knew the love of my life was out of danger and in recovery. I could finally breathe. Thank you to everyone who has said prayers. God heard you!
The cancer was very aggressive & Phillip has an uphill battle but is facing it with positivity & faith! To all those who have said to us these past 6 challenging weeks, “Oh, be glad it’s JUST prostate cancer,” you wouldn’t want it, tubes out of the stomach & all, radiation & chemo.
I’m just pointing out, if someone tells you in future, please be sensitive. It’s scary.
Later that evening, Jennifer Wilkov came to the hospital with dinner for me. She told us something that will stick with me forever and I’d like to share it with you now. She said when people offer to help, allow them. For if you say no, they do not have the opportunity to do something that makes them feel good. She said it stops the “universe of community” that we are all a part of right in its tracks. She believes we all have the urge to help others and we shouldn’t deny that good feeling for others. People stand helpless watching another suffer. So accept with grace and gratitude. Wow! I’ve decided to say yes more often and not feel I need to handle so much of this on my own. Jen was 100% right. The smiles on people’s faces when they help makes me smile. The help they offered gives us comfort. It makes everyone feel good. The giver & the receiver.
So to all who have prayed, to all who have sent well wishes, to all who have cared, to all who have thought about us and sent positive vibes of healing Phillip’s way, to all who have brought sustenance, to all who have treated our little one, to all who have embraced our older one, to all who have lit a candle, to all who have phoned, tweeted, posted, private messaged, snail-mailed, voicemailed & emailed, I say to you thank you, thank you, thank you!! You have been the force that has lifted Phillip & me through our darkest hours. God sees all. Thankfully, I was able to sleep by my love all night holding his hand.
Phillip wanted to be the “Poster child of Recovery” & he certainly earns the title ~ even his surgeon was pleasantly surprised to see how well he was that night after his early morning surgery. He’s recuperating so well one friend wrote, “In a war, you’d be the guy I’d be standing next to in the trenches.”
And he certainly hasn’t lost his humor when he proudly declared everyone could see his wedding tackle when nurses were changing his dressing & the curtain flew open!
He has 2 – 3 weeks of recovery at home, no lifting of more than a milk carton for 2 months, the urethra that ran through the prostate has now been “restitched” to the bladder and straining can tear the stitches. Ewww. And the catheter will be removed in about 10 days. It is at that time he will take what’s been coined “The Challenge.” A dose of meds to see if nerves were spared enough to rise to the occasion. If so, certain exercises & a fellow’s fine imagination will help such future situations without meds. Early signs of stirrings have uplifted us; we are happy Dr. Touijer was able to spare a good deal of Phillip’s nerves and are confident his road to recovery will be swift & exciting.
Rest, love and positive thinking will speed recovery so we can face the next hurdle.
Thank you to our amazing son for keeping everything running smoothly while we were in the hospital – from our furbabies to grocery shopping to boring household stuff & more.
Thank you to my sister & little niece for their unending support and beautiful comfort teddy & fruit basket – the perfect gift at 3am when I’m reaching for pain meds and some quick sticks of healthy food to line his stomach.
Thank you to Maira & her kids for having our darling stay with them those first 3 critical days. It meant more than most people know because I have never been away from our daughter more than 2 days in 10 years except once when I was needed far from home.
She had a marvelous triple sleepover and I was able to focus only on Phillip. My mind & heart were completely at ease. We are grateful to Maira for everything she did to ensure our little one stayed in routine with school, activities and all the extras to make this a sleepover to remember. And thank you to Marlene, Lisa & Kerrie for having our little one sleep over till the 5th night so I could focus on Phillip’s recuperation. I took Jen’s advice & didn’t feel awkward when I asked Lisa for a favor and big thanks to Kerrie for making a lovely chicken soup!
Bravo to Juan Carlos for upholding his covenant with God that he would shave his head when Phillip came out of surgery successfully. You are a good man – and thank you to your family for bringing groceries, so kind! Thank you to the Schaefer family for dinner, groceries and treats!
“THERE ARE SO MANY MEN WHO SUFFER IN SILENCE”
The morning after the surgery, Dr. Touijer visited again. He said he read this blog story about our journey. “I heard the radio interview. You ask a lot of questions people are afraid to ask. You have information that can really help people. There are so many men who suffer in silence.”
It made me tear up. It still does. When I think of that last sentence above, I well up knowing some men are going through this alone or are afraid to speak to others. From the day we came home, people have been reaching out to us for more information. We are very happy to offer anything we have learned on this frightening 7-week journey so far and all we will learn in the coming months.
Dr. Touijer was a great listener and a top-notch surgeon. He eased many of our fears. So important.
Today is January 17th, just 3 days after surgery and Phillip’s upright and looking good. So grateful!
As previously mentioned, this cancer has been referred to as a “couple’s ailment” because as I mentioned in an earlier update, it affects both the man and the woman who loves him. Of course, after saving the man’s life by making him cancer free, the sparing of the nerves is vital for sexual function. One doctor told Phillip his quality of life (urinary or sexual function) is not of concern to him, only making him cancer free. And that basically, he could kiss his sex life goodbye for the next few years. Hummm. See ya!!
Dr. Touijer spared a great deal of Phillip’s nerves, we are so grateful. When the time is right, Phillip will be back on his game. On top of physical healing, the emotional healing has to begin. I’ve encouraged him to look at racy photos. “It’s for recovery & health,” I point out. After all, Dr. Berookhim states in the radio interview above that orgasms are between the ears. Men have to “think” these good thoughts. For Phillip, stirrings are already in the works. Yay! No pressure, of course, but hallelujah all the same!
For some men, they don’t have a partner. One man we know, his wife died 3 weeks before he was diagnosed. We’ve learned from him and from previous prostate cancer patients and doctors, it’s the old adage – Use it or lose it. Taking things in their own hands, no pun intended, would be a start. There are also many other methods from medication, injections, implants and more. But with nerves spared, positive thinking & proactive joy is the way to go. Yeah, that’s where I come in.
Much more as we learn more on this journey. I thank the people who have reached out for specific prostate cancer information – you know who you are – and we will help any way we can.
As I have said before, we’ve taken this public because if this information can help alleviate anyone else’s fears, Phillip & I are glad we can help in this small way.
We rose early, drove 3 hours to Boston, did the run, had lunch in Boston and drove back. It was a fun-filled day, and again, immensely satisfying.
My team at Memorial Sloan Kettering have been nothing short of outstanding! Their care & professionalism have helped me pull through this.
Thank you to Kathy Colborn for offering that Bianca can stay in her apartment in NYC for the overnights of the surgery & recovery. And thank you to Shawn & Bita Abaspor for offering their 
