The Hamptons

In the 16 weeks since Phillip’s surgery, we’ve been back to the hospital 24 times including a 3rd full-body MRI and chemical injections. (To see the full story, click here: Kicking Cancer) By the end of March, Phillip’s PSA level was tested 4 times, and on each occasion the reading went up!! Having had the prostate removed, the PSA level should be undetectable. When the 4th result came in showing an increase of 77% from the first post-surgery reading, we were really unnerved.

So Phillip surprised me with a weekend house in the Hamptons. The Atlantic was our backyard! If you squint, you can see the kids looking for shells by the water’s edge in the photo above       . 

He wrote on his blog (Phillip’s Journey), “I wanted my wife to have some down time, as she has been carrying the burden greatly. For those of you who know her, you know she loves deeply and has deep emotions. This journey has been tough on her, and I wanted her to unwind more than anything. I
didn’t realize how much I needed this, too. We spent the weekend in an idyllic beach home with glorious weather. We chilled, played board games, grilled fresh salmon & steak, we talked, we walked, we flew kites, we gazed at the ocean & listened to the breaking surf, we delighted in the laughter of our daughter & her friends playing in the sand, running down the beach, rescuing overturned horseshoe crabs, and we reveled in the pure joy of beach life.

And the really good news… my latest blood test last week shows that my PSA is now undetectable. So, 40 rounds of daily radiation begins in June, then another round of chemical injections, and my plan is to have kicked it to the curb by then….Cancer out!”

To think Phillip was again worried about me when it is he going through all this agony! How incredibly loving, how completely appreciated!! This weekend was the respite we all needed.

The children made s’mores before watching family movies and Darling played her latest instrument, a Seagull Merlin she just stenciled.

Smoked salmon for breakfast & chocolate-dipped strawberries at lunch. More kite-flying, even by my Mom, exploring the Bay, and proper burials & prayers for horseshoe crabs that were found washed ashore. The children crafted their own crosses from beach wood and sea grass. 

    A little bit of shopping and a REALLY windy ride back on the ferry completed the long weekend.

The Bright Spot – We all feel rejuvenated! 

Especially Phillip, he looks fantastic!!!!

Thank you, my Love!

The Good, The Bad & The Spicy: Kicking Cancer

This story is intended for mature audiences only

A few days ago my husband was diagnosed with aggressive cancer of the prostate. The last time he heard the words “aggressive cancer,” his wife passed away 11 weeks later.

Understandably, we were terrified. We cried. We held each other. We prayed. We cried some more.

The next day, we pulled ourselves together and created a battle plan to conquer this assailant. We learned that over 220,000 cases are diagnosed each year and nearly 30,000 men die from it. It is the 2nd leading cause of cancer death in men.

By the grace of God, within 24 hours we found ourselves at Sloan Kettering, one of the best cancer hospitals in the world. We met with 6 doctors and learned a lot about what they called “Phillip’s uphill battle.” That day, the scans, MRIs, hematology specialist, surgical date, post treatment options and other specifics were organized. Hematologist because Phillip has a rare blood-clotting gene that makes surgery the least desirable option. Proton radiation so far looks best – we have much to learn in the near future.

It broke my heart. To imagine my husband in pain or suffering from surgery, chemo, radiation, it was just too much to bear.

For anyone who knows Phillip knows he is the kindest, most gentle-hearted, dependable man and I am so sad he has to endure this. He has been my rock all these years and now it is I who must be strong and steadfast for him. Together we will prevail.

We decided to face this “situation” with positivity and prayer. We decided to not use the dreaded c word but rather use words of encouragement and healing. We are using visualization to lay the foundation of a new path & healthy future.

We are looking at this as an opportunity to re-appreciate all the gifts in life – the colors of the leaves, the feel of our skin when we hold hands, the joy of singing in the car with our kids; routines that were so easily taken for granted over time suddenly became the most important things all week. He even became hotter…seriously, as if that were even possible for me, but with the reality that I could lose him, everything about him became that much more intense.

And we are giving great thanks! Thanks that a simple, unexpected blood test – that lead to a biopsy – caught this aggressive enemy when there were no signs. Thankful that we live near an acclaimed hospital specializing in this treatment, thankful for the doctors and nurses who will help my husband overcome this unwelcome intruder, thankful that today’s full-body bone scan will guide us in the direction we need, and, most definitely, we are thankful that we have an amazing support system in place:

These past days, good friends have stopped by to hug us, our Pastor drove to our home to pray with us, some folks brought wine, others shipped gift baskets, many sent messages of love and healthful wishes, one friend purchased a series of intense healing sessions for Phillip, friends picked up our daughter from school so we could get more tests done, one family came over Sunday morning to join us for breakfast and then worship with us at our church. All so amazing and so appreciated!

Our church, established nearly 300 years ago, supports many missions throughout our state and the world. This Sunday, they invited the men from Pivot House, recovering addicts who have found God, to sing.

They sang 1 song. Individual men sang different verses and it was so powerful that many in the pews were tearing up.

With the emotionally-charged days leading to this moment & the barrage of information and advice hurled at him in a matter of days, Phillip says he felt this overwhelming feeling that the song was just for him straight from God. He knew he “was not alone.” All his thoughts cleared instantly and he knew we would find the course he would take to conquer this challenge.

He suddenly pulled out his phone and was able to record the last minute:

 Phillip and I will continue to research treatment options. He has also decided to use this experience to empower other men who are going through this and give strength to their loved ones by writing about his journey, click: Phillip’s Journey. He will share his highs and lows on air as well, and keep his English chin up while continuing to use humor & laughter when he can…after all, that is the best medicine.

The Bright Spot – With a positive attitude, belief in faith, our doctors and ourselves, we will overcome this challenge.

UPDATE: December 3, 2015

It’s been two weeks since the news and we are so appreciative to everyone who has reached out to us. Emails, Facebook, Twitter, voicemails, cards, phone calls, visits…we are so so incredibly grateful!!!

For the past 5 years, we have devoted our lives to helping others by bringing the public meaningful information to help empower relationships, finances, well-being, kids’ topics, etc. And now you all have been reaching out to us with love, prayers and advice on everything from proton radiation therapy, seed implants, hormone treatments, essaic tea, reishi, chaga extract, benefits of zinc, magnets, conscious healing, aaah, yes, and even… coffee enemas.

We’ve made a spreadsheet of all of this information as we must find an alternative to surgery. Phillip’s blood-clotting gene, the fear of not sparing the nerves, removal of the prostate and glands, possible incontinence and loss of sexual function, all of these are not options we are willing to risk. So we’ve been reading a lot about proton radiation.

Having spoken to doctors at Sloan Kettering, Mt. Siani, Boston Scientific, and soon Yale’s Smilow Cancer Hospital, we are finding Proton radiation looks the most effective and promising. With costs of up to $200 million for these centers, there are not many in the country so we are thankful a Proton facility is relatively near us.

Our cutting out sugar, dairy & wheat over a year ago slowed Phillip’s cells’ growth & spread. More scans, MRIs, xrays, injections with radioactive chemicals, bloodwork, etc., are on the schedule for this month.

Have learned a lot these 10 days from all of YOU & the docs, putting that info into our CUREageous binder – all this knowledge is the battle tool to knock this out of the park once & for good! 

Amen to that!

To read about Phillip’s experience, please visit his blog: https://phillsjourneyblog.wordpress.com/

Update: December 6, 2015

We went to Sloan Kettering December 5th with optimism & hopes of proton radiation therapy and left in tears. Positivity went straight out the window when they informed us that Phillip has the most aggressive stage of cancer and they weren’t looking for treatments to just cure it but to save his life in future. The doctor said, “Most men have low or medium stages of this. They can do the proton radiation and it will help them. You, unfortunately, have the aggressive stage. You need surgery followed potentially by chemo & radiation.”  It still all seems so strange – Phillip has NO symptoms! None. It was a blood test for something else that put this on the radar! Phillip wrote about how he felt today, click: Phill’s Journey

We had a rough day & then he came home the next day with a dozen roses to make sure I WAS DOING OKAY. Can you believe it!! I’m supposed to be the strong one for him and he’s making sure I’M fine.

We will find our strength and get through this. I can say this today. Good you didn’t ask me yesterday.

Update: December 9, 2015

We are seeking all routes to health & longevity for Phillip. We spoke this morning with medical medium, Anthony William, who agreed with the surgery option but also recommended melatonin (kills prostate cancer cells), zinc liquid concentrate to shut down further cancer growth, curcumin                                 anti-inflammatory/antioxidant, and B12 for nerve strength, recovery & regrowth.

The Bright Spot – Yesterday, Maria Caporale came over with 2 pretty boxes, one for Phillip, one for me. She explained that in each was a “Giving Key” with a word engraved on it. Phillip’s said STRENGTH. Mine said BELIEVE. We are to embrace our word. Get through our crisis. Then pay it forward by giving our key to a person we feel needs the message more than we do in the future. Love love love the idea. If you know someone in need of hope, click: The Giving Keys. They employ people transitioning out of homelessness. Now that’s simply wonderful!!

Update: December 11, 2015

Quite honestly, let me say that 3 weeks ago I’d heard of the prostate but really didn’t know what its function was. When we heard Phillip’s case was such that it was best to remove it, the panic to keep my husband healthy set in and we both agreed if there’s cancer there, take it out!!

I thought it was like taking out the gall bladder. Or the spleen. Remove it. Move on.

But the following day, our research journey began. The visits to hospitals. The scans, the scares, the radioactive chemicals, more scans. And tons of information. And the number one thing we kept hearing was “nerve-sparing.” Nerve-sparing.

So what exactly does that prostate do?

The urethra runs through the center of the prostate allowing urine to flow out of the body. And it secretes the fluid that protects and transfers the sperm. Ah ha! Oh, no!! This isn’t just an organ removal. This is a potentially life-transforming operation that affects both of us.

I didn’t want to sound selfish while we were going through all the fear of the unknown with this cancer.

But I am. We frolic a lot. Ah-lot. And I didn’t want to lose that. And I definitely don’t want him to lose it for himself.

So as we’ve taken this journey public with the goal of helping the other 220,000 men who are diagnosed with this each year, we’ve learned a lot about “nerve-sparing.” Yup, that’s the KEY! Spare those nerves – spare that activity. The other key is finding the surgeon who has the greatest success sparing those precious nerves.

Robotics have come a long way in the past few years to spare those nerves. Thank God for the men who undergo this surgery and for the women who love them.

So we spoke with Dr. Bob Berookhim, one of the nation’s leading physicians who specializes in the management of the after-effects of prostate cancer treatment, particularly with regard to urinary & sexual function. Dr. Berookhim, assistant professor of urology at Lenox Hill Hospital in New York City, discusses treatment options to help prostate cancer patients, nerve sparing and what that means for quality of life after surgery.

And the great news ~ I read that men can have an even more intense orgasm with the removal of the prostate and Dr. Berookhim confirmed this and talks in detail about how in this candid interview.

If you know any of the 220,000 men diagnosed with this or the women who love them, this show is loaded with information that will put your mind to rest.

For anyone too embarrassed to ask the questions really on your mind, we cover it all from orgasm to …!

With that said, may I point out that it is graphic medical content meant for adults, click the play arrow:

The above radio interview with Dr. Berookhim includes discussions about the Gleason score, PSA, robotics, nerve-sparing, surgeon selection, urinary incontinence, sexual recovery, seminal vesicles, orgasm, sperm, injection therapy, implants, hormone withdrawal therapy, proton beam radiation, etc. This show has been condensed from an hour to just 28 minutes to give you the most information in the shortest amount of time with all news, weather & commercials edited out for your convenience.The Bright Spot – I look forward to many, many more years rocking & rolling with my amazing husband.

Note: After airing, all radio programs are archived on this site and can be listened to on your cell phone and through your car system.

Update: December 14, 2015

Feeling so blessed by the outpouring of love by our friends. The Schaefers stopped over to bring delicious stew, veggies & poinsettia, Lorine Zdanowski drove from afar to deliver her homemade pumpkin pie & chicken soup with treats & a very special card, the Medina family worshiped with us at church & said we should make a covenant with God that when Phillip heals, we will do something meaningful & difficult in return, and Juan Carlos said he will shave his head when Phillip gets out of surgery safely because that is hard for him and he is praying to God to get his friend through. Thankful to the Pechmans for sending this beautiful fruit bouquet ~ deliciously perfect!!

Thank you to Kathy Colborn for offering for me to stay in her apartment in NYC for the overnights of the surgery & recovery, I’ll need that rest! And thank you to Bita & Shawn Abaspor for offering their Vitesse Worldwide car service to get into the City & eventually back home so we have no added stress. Last thing we need to think about…cars, parking garages, NYC traffic.

So grateful to the countless parents who have picked up our little one when we are at hospitals or preparing for the holidays. Everyone’s been sooo A-MAZING & we’ve received an astounding 1,000+ messages, emails, voicemails, texts ~ overwhelming support, so uplifting, so appreciated!! I will get back very soon!! Thank you all!!!!

Update: December 15, 2015

Today was a rough day for Phillip. He needed another full-body scan to determine if the cancer had spread to the bones, something this type likes to do. It was different than the other scan that left him radioactive for 24 hours – the hospital gave him papers in case police pulled him over – apparently, police can detect if a car is radioactive!! Scary and cool at the same time…

But today’s scan was in an ironlike encasement that covered his body except for an oval that left his eyes, nose and upper lip free. He had to lay on his hands, palms face down under his butt, elbows in, and then the metal encasement strapped him down to the table. He is not claustrophobic but he said during the hour it was tight, loud & very unnerving. Emotionally and physically draining. Then he had to do another scan. Still went to work after those hours. And later this evening, we headed to the radio station to do the show.

The Bright Spot – Today marks 1 month since the news. We’ve done so much research, seen so many doctors, spoken to emotional & spiritual healers, ordered holistic supplements, done interview specials, prayed and, on most days, advanced with positivity. God, I love this man. Please protect him.

Update: December 17, 2015

Tomorrow we find out the results if the cancer has spread to the bones.

If it has, the surgery will be cancelled because that’s a whole different ballgame.

We have received much welcome feedback for going public with this to help empower the hundreds of thousands with this diagnosis.

We are so happy to help in this small way if it alleviates anyone else’s fears. Information is power & we are powering up to make this a success story of health & well being.

Thank you to our pastor’s wife. She gives me great comfort with her words of wisdom, power of prayer and her soothing voice. Peace. Comfort. I need that. I need it to stay strong for my husband.

Update: December 18, 2015 

The results are in – the cancer has not spread, thank you, God!!!

Now preparing for the next phase…with our CURE-ageous angel from Michele Grace.

Bring it on. We’re ready!

Update: December 31, 2015 

This New Year’s Eve, we reflect on these 6 weeks with full hearts of thankfulness to all who have reached out to us. Most recently, thank you to Michelle & Sue Barra for mailing us the last of their Holy water to help heal Phillip. Sue received the Holy water from Lourdes, France 50 years ago! She had a few drops left and sent them immediately to Phillip. Amazing!!

Thank you to the Szele family for the Christmas Novena at the Basilica of the National Shrine of the Immaculate Conception in Washington, D.C. and thank you to the Cunniffe family for their donation to The Owl Foundation in Phillip’s honor – love to hear about this kind of donation! Our little one named our special recuperating owl Amber for her beautiful eyes. Click their link above to find out more about this wonderful Canadian organization.

Thank you to Liz Irving who donated to The St. Francis Breadline where the Franciscan Friars will offer healing prayers for Phillip. “Hundreds of hungry people eat every morning” on the breadline at 135 West 31st Street in Manhattan since 1930. Please visit: The St. Francis Breadline. 

And thank you to Maira & her family for offering to have our little one stay over with them the days I’m in NYC at the hospital while our son (23) is home with our pets.

The Bright Spot – We have learned about so many wonderful organizations through our challenging 6-week journey. As scary as it’s been for us, it, too, has been a blessing.

Update: January 1, 2016 

The decision has been made.

After much research, many physicians, interviews & recommendations, Dr. Karim Touijer of Sloan Kettering is our choice for Phillip. Specializing in genitourinary cancers, Dr. Touijer is an expert at nerve sparing and has performed more than 1,500 prostate surgeries over 23 years.

We are confident we have the best surgeon for Phillip and will pray for his wisdom and steady hands.

The Bright Spot – We have just been informed that Sloan Kettering has a brand new hospital where I am allowed to stay in Phillip’s room overnight! No closing visiting hours! I can sleep in the room. Thank God! (Thank you, dear Kathy Colborn for your earlier offer.) This hospital is so new many of the staff members we’ve met haven’t even visited it yet. Wow!

This is Sloan Kettering’s website if you need more information: MSKCC

Update: January 13, 2016 

I loved this from my husband’s blog so I thought I’d let him tell you in his own words: 

2 Popes & a Nun

Phillip: “Today is the eve of my surgery and I am totally at peace with where I am on this journey. That’s because of each and every person who has contacted my wife & me has not only sent prayers and wishes, but have gone above and beyond in their outreach.

Just this last week, 3 people stunned me. Holly called to let us know that she’s been praying continuously and asking her great cousin to help as he’s been in Heaven since 1958. When we asked why him in particular, she replied â€œOh! Did I never tell you? My great cousin was Pope Pius XII.”  While reeling from that phone call, the phone rang again. One of my wife’s oldest friends called to see us as she had something special for us. She informed us that she was given a gift by a close friend of hers who was one of the nuns from the Missionaries of Charity, the congregation founded by Mother Teresa. This gift was a small piece of cloth containing Mother Teresa’s blood and she wanted us to pray over it! I thought Wow! this is getting heavy and then…. Lorine emailed to let us know that she’d just returned from a vacation in Italy, and while she was there she went to Rome to light a candle for me, and who do you think was conducting the service?… Pope Francis! Whoa! Extra prayers were lifted up that day.

So I have 2 Popes and a soon-to-be canonized Saint putting in a good word for me! Now I know why I’m feeling so peaceful and ready to take this on full steam ahead.”

Inspiration…

We just received a card from one of our daughter’s teachers. Inside it she had written half a dozen inspirational quotes. Each one has significance, but moreover, she had put so much thought into the message she was sending. Thank you so much, Mrs. Z:

“Attitude is a little thing that makes a big difference.” – Winston Churchill

“Feed Your Faith and Your Fears Will Starve to Death.” â€“ Anonymous

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” â€“ Eleanor Roosevelt

“Turn your face toward the sun and the shadows will fall behind you.” – Maori Proverb

“Become a possibilitarian.  No matter how dark things seem to be or actually are, raise your sights and see possibilities – always see them, for they’re always there.”  – Norman Vincent Peale

“Know, then, whatever cheerful and serene supports the mind supports the body, too.” –  John Armstrong

WARNING: GRAPHIC IMAGES AHEAD

Update: 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 (see Update: January 13 above), I am a walking ball of nerves right now. 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 Jacky. 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. (These top 3 photos are stock. The bottom 2 are Phillip’s tube & incisions) The body is filled with gas for surgery.

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 describes it best, click: Phillip’s Journey

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.

Unfortunately, Dr. Touijer was unable to spare much of Phillip’s nerves because the organ had opened.

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. I know it was hard – you are a good man – and thank you to your family for bringing groceries, so kind! Thank you to the Schaefer family for dinners, groceries & treats – thrice!

“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 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 he could basically kiss his sex life goodbye for the next few years. Hummm. See ya!!!

Dr. Touijer wanted to spare Phillip’s nerves, but he said sparing his life was more important. 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.  â€œIt’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 shortly before being 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. For us positive thinking & proactive joy is the way to go ~ yeah, that’s where I come in.

More to come as we gather further information on this journey. I thank the people who have reached out for specific prostate cancer info – 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.

The Bright Spot – All of YOU!!! Thank you all for your prayers, hope & generosity. So grateful.

Update: January 16, 2016

One of the nurses said as we were preparing to leave the hospital “…and there’s no sex allowed while the catheter is in place.”
Eww!! “HOW is that EVEN possible!” I asked. “You’d be amazed at who lands in the ER & what we see,” said the nurse. Double ewww!

Phillip will be home 2 – 3 weeks. He has to walk a little each day to prevent clotting & increase lung function. He’ll have his catheter for 10 days & said to me this morning, “I’d love to go to the store & ask the shoe clerk if he has a pair that will match my bag.” Nice. Good to know he hasn’t lost that dry English humor!

Update: January 18, 2016 

Glad to say he made it downstairs for dinner although it hurts to sit. He says there’s an aching feeling when he sits. Come to find out he’s sitting on the catheter tube. We pictured it running through the urethra & taking a 90 degree turn up to the bladder. But noooooo. It runs along the perineum so every time my dear husband sits down, it squashes the tube. Owww. Only laying down or standing up is tolerable so he’s mostly in bed. How does the catheter tube stay in the bladder? It’s injected with a fluid that fills a balloon inside of the bladder so it can’t slip out.
A pin cushion just last week, upright & moving this week! Fascinating how positivity & prayer can lift one’s spirits and heal the body. He has to walk a little everyday & it’s freezing out so he walks around the house. He woke up a while ago & looked in the mirror, “Why do I have sparkles on my forehead??” I replied, “Remember when we were walking through the playroom & you hit your head on the ornament?” With these whirlwind 7 weeks, I haven’t moved a single holiday ornament.

Glad his stomach is clear of the gas they pumped in him; really, one of the most painful parts of recovery.

Update: January 22, 2016 

The catheter stays in around 10 days. With Phillip’s phenomenal recovery, the catheter was removed on the 8^th day. So why are WE BOTH ON CIPRO?? The 2 weeks leading up to surgery I took advantage of him every day. We didn’t know how long until we’d be intimate again following surgery so I didn’t waste a moment. But I ended up with a UTI, 1^st one in 15 years, well worth it. Enter…Cipro. Meanwhile, Phillip is required to take Cipro before & during the days of the catheter removal. Weird, we’re on this same strong prescription at the same time!

I drove us into the City to have the removal done and sitting in the car was definitely uncomfortable for Phillip, a person who never complains. But just before the Triboro Bridge, I had to slam on the brakes and Phillip slid forward. Oww!! A “perineum roll!” He turned pale and groaned out loud, reclining his seat as far as it would go and counting the minutes till this foreign thing was out of his body. Poor fellow!

Update: January 23, 2016 

It was so nice to see Phillip resting downstairs with us in his big cozy robe watching the snow fall during the blizzard. Thank you to Michele and CJ who just called to say they ordered a plow service to plow our driveway!! And thank you to Kathy for her beautiful basket of organic fruits, a big surprise & most welcome especially on a snowy weekend ~ smoothies, anyone!!

I would also like to take a moment to thank my amazing husband for surprising me the Saturday before his big surgery – he painted the entire kitchen for me while I was out gathering medical supplies & loads of prescriptions and all the stuff he needed for this recovery & other errands I knew I wouldn’t be able to do once we were housebound for a few weeks. Every time I walk into the kitchen, I think of his thoughtfulness during such a trying time in his life. That’s my Phillip. Always thinking of others before himself.

Update: January 24, 2016

Because of stitches inside, outside and all over the place, Phillip cannot bend down. I’ve been helping him with everything, even scratching his ankle when he couldn’t reach an itch. I know this dependency weighs heavily on my Mr. Dependable. Last night, I heard him cry out & raced upstairs to find him clinging to our bureau. “What did you do!” I chided, seeing the agony on his face. “I tried to put on my own pj pants. I don’t want you to have to do everything.”

Oh, brother. Now he’s back in bed having pulled out his back & strained his stomach. But that doesn’t mean healing will slow down. Part of the recovery process is in the mind. I hand Phillip his IPad everyday. “You have homework to do. Look up some racy pictures.” Yup, that’s why he’s looking healthier day by day…and I’m not even a trained nurse! 😉

Indeed, his overall recovery is well underway & all of your wishes helped speed this on. My sister is in touch constantly & Phillip’s mother Skypes him every day: Amazing Grace.

I’m beyond tired and want to give huge thanks to Ana & Regina for showing up on our doorstep Thursday evening with a hot meal in hand. Ana had just read about Phillip that day and ran to the grocery store and cooked a fantastic Mexican dinner. Thursday was a particularly draining day and when she rang the bell at 6pm, it was like an angel appeared at the door. We ate that meal for dinner, Friday for lunch and Saturday during the blizzard!! And blessings to the Lindstrom family for all you’ve done for us and thanks, Wayne & Marshall, for the fruit basket & to everyone at Phillip’s workplace, your healing vibes are much appreciated!

The Bright Spot – We have a wonderful support system and are sending oodles of hugs to everyone with gratitude!

 

Update: January 28, 2016 

“The Challenge”

“The Challenge” comes about 4 – 6 days after the catheter is finally removed. Prescribed meds increase blood flow to the nerves that were spared and, in our case, we also choose to continue to take B12 which Muneeza Ahmed of Healthy Moon recommended for nerve strength, nerve recovery & nerve regrowth. (See December 9^th update above).

We knew our day would be January 28^th. The medication would have reached their prime function and the kids would be out of the house!

I wanted the day to be super special. Quiet. Relaxed. Beautiful. I found a gorgeous silk nightgown at Victoria Secret with lace & sequins.

Phillip was geared up in a completely different way. He had it up to his eyeballs with quiet & relaxed. He was psyched, eager and wore the fun crown Maria Caporale sent him in the mail the night before!

That familiar “come hither” confidence was the Phillip I love and know so well.

But I was concerned about pressing on his wounds. Would he be comfortable? Would he bend in a weird way and pull on his outside stitches? Would the inside stitches suddenly tear?

All these things were running through my mind and I was full of worry. For Heaven’s sake, he was lying in bed peacefully for nearly 14 days, I didn’t want to suddenly cause chaos.

Plus, I knew intimacy would be different. That’s all I kept hearing. Orgasm would be different. But what did that mean? I’d ask doctors, nurses, former patients, but just hear it would be different.

Phillip must have sensed me fretting. He pulled me close, kissed me passionately and from there, it was like old times. An exciting dose of Afternoon Delight…

Return of the Mojo!!

“The Challenge” was conquered and, in the end, all I can say about the “finale” is that it’s different. A robust response, but different.

Phillip described that it’s just as toe-curling & heart-pounding as before but instead of being more localized, it was all-consuming & uniquely exceptional. Cool! We’ll take it!

We were thrilled and relieved and talked about it later that day. He said he was concerned that reaching climax without the love flow – if you get my drift – would not be as satisfying. But he said it was, indeed, just as satisfying. Good for any fellow going through this to know.

And for me, I was kind of melancholy that I’d never feel his gift surprising me throughout my day any more – ladies, you know what I mean. But I’ll just focus on the bonus: fewer sheets to wash. Enough said.

Later, we reveled in our day & snuggled through our evening.

Then the phone rang.

It was the surgeon.

He asked about urinary function, which for some men can take a few months. Phillip was proud to announce that he was back to full function – to which the doctor rejoiced that this puts Phillip in the top 5% of successful patient recovery! Thank you, Dr. Touijer!!

Then he hit us with the news of the pathology results.

The cancer had broken through the wall of the prostate. Three nodes showed positive for cancer. The doctor says there’s a 70% possibility of recurrence of cancer in the future within this group. A post-surgery prostate-specific antigen test on February 24^th will help determine if the cancer is “in transit,” or if the nodes were the last stop. So radiation and chemo are still on the table. Phillip said, “At least we don’t have to worry about losing my hair with the chemo.”

The surgeon continued that the tests on the 24^th might be too soon after surgery so he may run them again the following week. Then he talked to us about our experience with “The Challenge.” We gave him a rundown and he said, “That’s what we’re shooting for.”

“No pun intended,” I added cheekily.

“You two are something else,” he said, more lightheartedly. I could hear the relief in his voice. It must be such a drain on the doctor to deliver unhappy or uncertain news.

The Bright Spot – Having a brilliant surgeon on our side, thank you, Dr. Touijer. The last 8 weeks have been an emotional roller coaster but today, in particular, we were at the highest peak. One moment we were flying high feeling the love between us and later that evening – *BAM!* –  we were dropping at nauseating speeds hearing the pathology results.

But we will remain hopeful & humorous to get us through this.

You know, after we cry.

Update: January 31, 2016

Hop on that emotional roller coaster again because we’re clinketing back up to the top. Yeah, clinketing is not a word. But you can picture it…clinkclinkclinkclinkclink up the incline.

It’s my birthday and a beautiful family breakfast starts the day. Followed by amazing gifts  â€“ amazing because Phillip never left the bed – thank you, Internet, UPS & our clever son! After, the doorbell rang and the Medinas brought over another yummy homecooked meal – this time eggplant parmesan, creamy cauliflower casserole with sautéed green beans & carrots.

And then later that day, Phillip got dressed and we drove 50 seconds around the corner from our home for a lovely birthday dinner – how convenient to have a renowned 5-star French restaurant less than a minute away! Thank you, Lisa Traweek, for making it extra special!

We returned home and he went straight back to bed. He looked really weary by the end of the meal.

The Bright Spot – He was up. He was dressed. He was out. Best. Gift. Ever. Top of the rollercoaster hill!

Update: February 2, 2016

The Revelation!

The week of Phillip’s surgery we both still could not believe he was diagnosed with cancer. He felt great. He looked great. We eat well. We live a clean lifestyle. Just couldn’t get our heads around it. So he decided to have blood work done one more time before going under the knife.

He went to our local hospital. The results came back the day before his surgery. Do you know what came back on the paperwork???

The reading that did, indeed, confirm his aggressive state of antigen level BUT ALSO a past reading that showed he had blood work taken for a physical in December 2012 that showed a bad elevated level of the antigen that said “HIGH” next to it!! In caps!!

He’s had cancer for 3 years!! And the doctor never told him!!!

Phillip might have been able to have had seed therapy or proton beam radiation or any of the other non-invasive treatments we hear everyone else is having and be done with it!!

But no!! The doctor, who has since retired, never told Phillip he had cancer and now an organ has been ripped out & his body parts rewired! Not to mention his potential to have lost quality of life with regard to urinary & sexual function, but on top of it, we’ve just received the news that the cancer broke out of the “prostate shell” and moved into the nodes. Those old blood results & now the recent pathology results are a real kick in the gut. But with that said, we will collect ourselves & move forth with a brave face.

The Bright Spot – Lots of people write to me and ask how we keep upbeat.

It’s simple: God, family & friends, positivity and love. 

Every single ounce of my optimism comes from my greatest hero, click: My Hero

Update: February 3, 2016

Our “Story”

I’d like to make it known that this disease is not our “story.” We will not allow it to take us over & defeat us. No. Our “story” is that of faith & positivity ~ facing fear from a place of hope, rising up no matter what anguish we feel and tackling it head on with the force of God, family & friends around us.

Our “story” is not one where we fall victim to the malignant cells but a story of triumphs with a billion healthy cells that stem from optimism & courage & promise.

I wanted to share with you parts of a card that arrived in the mail this week from a woman who read this blog story & contacted us. This is the whole point of why we took our journey public. We want to offer anyone going through this information we’ve gleaned: resources, links, interviews, insight, steps in the process, and most of all, comfort.

It’s not been easy for us. We’ve had our moments. My eyes cried a river when I first heard the news of my dear husband a few  weeks ago. Knowing what his first wife went through and how he lost her so quickly to disease makes fighting for his health all the more real to us.

So, let’s look at the positive, shall we…it’s over 3 weeks since Phillip’s surgery and he’s looking better every day.

Friends continue to stop by – including the mighty Medina family who trudged through the snow today to bring over hot lentil soup. Thank you, Joanna, for braving the fog with your incredible chicken marsala & thank you, Kerrie, for the amazing veggie lasagna. Thank you, Susan, for your thoughtful altar of intention & recovery and for all of the energy healings with Bonnie. Thank you to Pastor Chuck for visiting many times – before & after surgery – to pray with us. And dear Geri, we really appreciated all the treats & goodies for Super Bowl Sunday and especially the lovely pink tulips!

I swear, I should open a food review blog – I am getting so spoiled! But in reality, not worrying about cooking has given me the physical & emotional fortitude to care for Phillip. He looks marvelous and it’s really because of our Army of Friends.

I did read back in December from a Sloan patient who’s gone through this – people you think you could count on in this situation may not be there for you and other folks – even acquaintances you barely know – come out in full force to make sure you are okay. Phillip & I would have never believed it until we experienced it. Amy Boettcher, whom I’ve never met, has sent me tons of information, links & advice having experienced that not having that information took her husband and she’s doing her best to help save mine. A-MAZING!! And Sue Peters, who I haven’t seen in nearly a decade, has been a huge source of my strength especially on the long day of surgery when she stayed on the phone with me during some of my weakest moments, guiding me having been through something similar, and she has unwaveringly texted solid advice throughout all these weeks giving great comfort – she is one Warrrior Woman, that’s for sure! You’d be amazed who’s come to the rescue and a few we hold dear who are no where to be seen.

I’m not upset about it. I’m interested in the human nature of it. Perhaps disease makes them uneasy. Perhaps they, too, have had significant loss and can’t bear to see someone they’ve known for years go through pain. I’m passing along our experience so if you go through it, too, you can look back and say, “Oh, yeah, I read that somewhere, and it’s okay.” Don’t worry, it IS okay.

The Bright Spot – Count the blessings you have. Keep the faith. Move forth with knowledge & confidence. Focus on the good.

Update: February 4, 2016

Princess Leia goes to school. Yes, between recovery nursing & running house, I twirl hair.

Update: February 15, 2016

Interestingly, the 3 people I was writing about above who I thought I could count on have called. It was, indeed, as I had thought. They had issues they had to deal with. Never feel badly if someone you really thought should reach out didn’t because you just don’t know what they’re going through. Just focus on your healing.

With that said, Phillip’s recovery is going remarkably well! I can’t believe his surgery was already more than a month ago. His wounds are healing and his tummy hair is growing back. He has pangs, twinges & aches but they are getting better day by day. My “therapy” with sexual recovery continues…yup, that’s always a good day! For some reason, he doesn’t feel pangs and twinges those days!

He can’t lift anything over 10 pounds for 2 months. But something has happened because he now has a hernia! He can’t have another surgery at this time, obviously, so he is being monitored. We are back in Sloan on February 24th for further tests to determine radiation & chemo protocol.

We’ve learned through all this it’s a process. Just one step at a time…

Update: February 21, 2016

Just when I think I should cool it on my exposé of personal details, I am reminded why I feel compelled to help others with this step-by-step account. I have received countless letters/emails that it has helped people go from “paralyzing fear to forward motion.” Just last night, an old dear friend of mine from Texas, Trish, sent me a Facebook private message, this was part of it:

“I was at a Girl Scout meeting today and one of the moms told me her husband was just diagnosed with prostate cancer. I told her about your web page and that it will answer many questions. Her eyes watered up and I could see a sigh of inner relief. I said Bianca and Phillip know exactly what you are going through and that is why they are sharing their story. So thank you, know you are helping others by sharing your story.”

And then I received an email from a woman named Rosalind who wrote: “You are an inspiration to so many as you traverse this challenging course. You are making a real difference in others’ lives by sharing your story so candidly.”

The Bright Spot – During Pastor Nathan’s sermon this morning, he spoke of today’s culture which revolves so much around the notion of “me me me.” He said look around you and help others while worshiping God. That’s what life is really all about.

I truly hope this journey will help so many other people to see their path a little clearer, begin their healing process and conquer the assailing cells with intention & certitude until total wellness abounds!

Update: February 24, 2016

Spent the whole day at Sloan between their buildings from 60th to 68th streets. It was pouring rain but that didn’t not dampen our spirits. Today was testing day.

It is so hard to believe it’s been 6 weeks since surgery! Hours later the results came in. Phillip & I thought it looked good but the doctor says it’s not where he wants it to be & has ordered further testing in 3 weeks & then again in 4 weeks. We are looking at the glass half full because the results are heading in the right direction. The doctor says he will not prescribe radiation and/or chemo until further test results come in next month. Okay. Good with that. So moving forth with positivity & faith.

Update: February 25, 2016

Phillip happened upon a post on Facebook on my computer today from my friend Kelly, loving wife & mother of 3. (Kelly & I over 27 years ago, what’s that? A pay phone….?)

Kelly’s post: “Yesterday I had a tough day. Today I praise my friend who I think about often. Her husband was diagnosed with advanced prostate cancer. He was the picture of health!! Her ability to stay strong and soooo hopeful is so incredible. She never wavers on her faith in God & what He can do. She is his rock when I know inside her heart is crying. So it brings me back to reality. I say shut up Kelly and stop complaining. I know he’s going to resume his health with God on his side. You are one incredible woman and have taught me more than you know about faith and UNCONDITIONAL love!!!”

Thank you, Kelly, you are an amazing friend and have been with me through all of this. xo

Update: February 27, 2016

Bita & Shawn, who gave us round trip car service to & from Sloan with Vitesse Worldwide, spoiled us tonight with a beautiful Persian feast along with authentic pistachio nougat, healing angels for us & the adorable Sweetheart angel for our little one. We are so grateful for all of our wonderful friends!!!

Update: February 28, 2016

Important message: Our journey has been documented to help anyone who has been diagnosed with prostate cancer know what the process is step by step. I am writing this as I learn it with the hopes it can help alleviate your fear.

With that said, it’s not just for the 220,000 men diagnosed each year. It’s not just for the partners who love them. I hope it also gives all of your friends & acquaintances who don’t know what to do or how to help some suggestions that have helped us along the way. And I hope it helps the caregiver. Fred, who lost his beloved wife, Mary, knows this best & wrote this to me:

“I am on a train to Washington, D.C. and I decided to go to your website and read all of your posts on the current story non-stop. I must say that reading it in its totality is so much more meaningful and moving. It makes for some very compelling (and scary) reading as you write each chapter in real time as it is happening.

You bare your mind and soul and leave nothing out including your love and intimacy with Phillip. Amazing! I wanted you to know that your thoughts, your feelings and your fears are shared more often than you know. Your love and trust in God is always evident in your writings. Your faith will get you through all of it and you will come out of it so much stronger regardless of the outcome. I know this is true. I am living proof.

Often all the attention is on the person who is afflicted with that horrible disease and sometimes the loving caregiver is unintentionally overlooked. I know what you are dealing with and will say a special prayer for you for being the “glue” in your family. My best friend said to me one day that he always knew that I was the captain of the ship in my marriage but never to forget that Mary was the compass. That is how I see your marriage and relationship with Phillip. You are the compass.”

Wow!!! I am looking forward to the day when Fred & I meet. He has been there from Day 1 writing words of encouragement throughout this challenging time. Thank you, Fred!! And thank you for lighting candles here and in New Zealand. And to Lorine for lighting candles for Phillip in Italy, and Sonja in California and to George and Michelle and countless folks everywhere who have burned the flame of healing prayer for my husband. We are so appreciative!!

The Bright Spot – All of you!!

Update: February 29, 2016

An enormous package sat in the glistening sunshine on our doorstep today as we drove up the driveway. It was from Elise in Texas (click for story: Elise) (Right: 31 years ago Elise & I) She sent us each an amazing gift with a card that wished us a Happy Spring of Recovery & Wellness. The children received Godiva chocolate bunny & eggs, perfume for Little One, cologne for our son, and sexy nightgown, pjs & robes for Phillip & me.

Then the doorbell rang and another large package arrived, this time from Cath in England (click for story: Cath) Nearly 500 tea bags of Phillip’s favorite!! He was over the moon!!

(Below: Cath & I over 26 years ago)

At night, the Pechman Family arrived with dinner & wine. Phillip loves his wine and catching up with this wonderful family was an evening cherished. Maira and her family gave me immeasurable comfort when I was with Phillip in the hospital for surgery & recovery by having our daughter stay with them those days so I could focus all my energies on Phillip. I will always be so grateful not only for the exciting time she spent with them but for the peace of mind they gave me at a very stressful time.

 The Bright Spot – Our awesome friends!!! Love you!!

Update: March 1, 2016

Today we learned Phillip – who’s never had an allergy in his life! – is allergic to the medication injected into his body this morning. I have never seen my husband writhe in pain like that before. It was agony for him but excruciating for me as I sat helpless beside him. If only our prior doctor had told Phillip he had cancer 3 years ago, we could have had radiation at that point and been done with it. But now he suffers unnecessarily and it’s still a long road. Back to Sloan on Friday to try another medication.

The pain left him exhausted & drained. When we returned home, he rested while I got the mail. And what a surprise there was!!! A gorgeous comfort shawl crocheted by Annette O’Neill, Mom of Karen O’Neill Cross from high school! Mrs. O’Neill handmade it at the Cathedral Parish at St. Patrick’s Women’s Guild Prayer Shawl Ministry.

The Bright Spot – Oh, just everything about the 2nd half of this day! The time & effort by Mrs. O’Neill. The thoughtfulness of Karen to send it. The amazing timing of this gift arriving on a day when Phillip needed deep comfort. And my learning of yet another wonderful organization and a gorgeous way to bring warmth & peace into someone else’s life. Wow! I needed to share this with everyone straightaway!

 

Update: March 8, 2016

Sweet, darling Gigi visits us for 12 days as my sister & niece head to California. (Gigi with a hair cut…all 5 pounds of her!)

 

 

 

 

Our 9-year-old niece was one of 2 children representing our state in the National Children’s Choir and we were very much looking forward to watching her perform.

She was selected last October and we were all looking forward to this momentous family event. But the news of Phillip’s cancer the following month squashed those dreams for us. He would be recovering from his surgery.

She sang beautifully in front of 2,000 people. Our cousins & friends in California went to the concert.

We watched it at home on video. Not the same but we were there in spirit.

Update: March 18, 2016

Keeping our spirits up as we head to Sloan for more tests. Phillip had testing 3 weeks earlier but the results weren’t exactly where the surgeon wanted them to be so we waited for today’s testing.

Walked in with great positivity.

Phillip’s been looking so good just 2 months after surgery so we have full confidence his test levels will be right where the doctor needs them to be.

Waiting. Should be on the portal by 5 or 6pm.

Waiting all day Saturday. Should be up any time now.

Waiting…

Update: March 20, 2016

*Ping!* It’s Sunday morning, the test result has arrived. Opening the portal with great anticipation to see his number has gone down, down, down. That’s the goal!

But no. It’s gone up. UP!!

As mentioned earlier, the cancer had broken out of the prostate and traveled into the nodes. Now we will see the surgeon in 2 days to determine the next course of action.

HAD our prior doctor 3 years earlier informed Phillip that his PSA level was HIGH, we could have attacked this cancer early with simple radiation and medication. HAD this doctor let us know then what we came to find out 3 years too late, we could have saved a body part. HAD this doctor done his job and told Phillip what his numbers were, we wouldn’t be on cancer schedules, medicine schedules, extended loss of time at work, missed once-in-a-lifetime family events, sexual recovery protocol, excruciating allergic reactions to chemicals pumped into Phillip’s body, upcoming radiation & HRT/chemo, crushing medical debt or fear of the future.

Will it continue to run through his body, latch on some organ, take his life before his time? Will he see his grandchildren? Will he walk our little one down the aisle?(Here trying on my wedding gown at 10 years old.)

Of course, all this stuff goes through our minds. His especially.

He’s living with this in his body and it plays on the mind. No matter how much we move forth with positivity, it always lingers in the back of the mind. We are human.

It could have all been nipped in the bud! To say we are angry at that doctor from 3 years ago would be an understatement.

 

The Bright Spot – We’ve got each other.

And we’ve got a great support network and want to give a shout out to the Mighty Medina Family for taking extreme action this week…you know why & we thank you!!

And a huge thank you to my mother-in-law who not only Skypes us constantly from England and is a wall of strength for us but for the incredible gift she just gave us – you are one remarkable woman!! Click: Amazing Grace for her story.

 

Update: March 21, 2016

They’ve just wheeled Phillip into the OR for emergency throat surgery. He choked on his meal – that is the power of stress!

And this is why we try SO hard to focus on the positive because when an inch of stress moves in, it can be damaging.

Go away, stress!! We have the power of God behind us!!

Update at midnight:

His Schatzki muscle at the top of the esophagus was torn. He’s raw now along the esophagus & will be on soup and ice cream for a while.

So add pain meds to cancer meds. This man will heal with positivity – no doubt.

I just have to get him back to that place.

Update: March 22, 2016

Nothing would keep us from meeting with Dr. Touijer at Sloan today. The results on Sunday added to the misery of yesterday and today’s meeting with our surgeon will set the course of our future for Phillip. Sure enough, the doctor was not happy with Sunday’s results so Phillip will start radiation & HRT in 2-4 weeks. Can’t start sooner because his stitches are still healing these 10 weeks on. Racing off to school to pick up Little One. Always on the go these days…

The Bright Spot – Our 10-year-old’s school is simply the most wonderful place ever, a tone set by her marvelous Principal whom we admire.

Her 4 main teachers – Mrs. W, Mrs. Z, Mrs. Z & Mrs. C have all kept abreast with this journey and have reached out to us on numerous occasions to say they are keeping a watchful eye on our darling making sure she is as happy & content as always.

And Mrs. K in the Main Office is a Godsend. Always on it for me when I’m scrambling to keep all systems flowing.

It is always of the utmost importance to us that our son & daughter feel happy, comfortable & empowered throughout a journey we cannot shield them from.

Dad’s recuperating. Dad has a catheter over a week. Dad is in bed for 21 days. Dad’s tummy hurts.

We are proud of the strength and adoration they show their father.

They are a testament of his amazing parenting as the Superhero Daddy he is.

I love you, my dear husband!

Update: March 24, 2016

We really thought we were through our darkest hours on this miserable journey. Today marks 10 weeks since the surgery. Phillip’s recovery has been nothing short of remarkable! He looks & feels stronger every day and hopes that even if he has to be zapped for 6 or 8 weeks with radiation, maybe he’ll be lucky and bypass the chemo/HRT.

When we met with the surgeon on the 22nd, I was fishing for some positive news. Perhaps the test results we saw on the portal Sunday morning were not as bad as they looked. Perhaps going up was a fluke. Perhaps they were hovering around the other number and really were “stable.” “You’re really not happy with that number?” I asked, half-anticipatory. “No, I’m not happy with it,” the doctor said quietly. “I’d like you to meet with the oncologist on the 24th.” My heart sunk.

So today’s the 24th. What we hoped would be an hour meeting turned into 4 hours at Sloan. We met with the oncologist who explained, “You have a serious disease – aggressive Gleason 9 (4+5) prostate cancer at a young age and you are a high-risk patient because it broke out of the prostate membrane and traveled into your nodes. With the most aggressive cancer at a 10, you are a 9.”

(Photos of our many trips to Sloan including that horrific allergic-reaction-to-meds day:)

She explained Salvage Radiation Therapy (SRT) in great detail – Phillip will need 40 rounds of radiation & up to 3 years of chemo injection (HRT) to reduce testosterone which exacerbates cancer.

Side effects include inflamed bladder & burning, bleeding, fatigue and potential damage to the critical neurovascular bundles responsible for carrying the signals that promote the flow of blood to the nether region for an erection. The HRT will destroy libido and potentially change his personality, otherwise described as male menopause. It could take up to another 2 years to recuperate after those 3 years and some men never recuperate.

Great. Just when we’ve been enjoying each other intimately again post surgery – B-A-M!!! – intimacy is the target once again. And this time it could be for years! We were devastated!

The oncologist talked about another full-body MRI to help determine where the cancer may have moved, but cautioned it may not be visible at this time. A body cast would be created of his pelvic area to ensure he always lays on the Truebeam Linear Accelerator in the exact same position for each radiation treatment. 4 freckle-sized tattoos would be permanently marked on his skin. The medicine would be injected under his rib cage and we were told 2 “golf balls” form under the ribs and release that medicine over each month.

Phillip & I couldn’t take it anymore. We thought the nightmare was behind us when he had the radical prostatectomy and blitzed through recovery on faith & positivity. But this was just too much. Too much!

Phillip asked the doctor what would happen if he opted out of radiation & the meds. Her face dropped. She looked at him very seriously and turned to a computer screen. We could feel the gravity in the room. She pulled up a program that looked at cancer return rates in 6 years & life expectancy when Gleason Score, test numbers, age, etc., were inputted. With & without post treatment.

The results were bleak.

So as it stands, we are heading into the darkest & longest part of this journey.

…when all we really felt like doing was running away. We went home, ate some soup since that’s all Phillip can really eat because of the stress-caused impaction & surgery on Monday night, and then we just decompressed.

The Bright Spot – The Schaefer family picked up our little one from school today and tomorrow they are heading into NYC with the girls to visit American Girl & the Hard Rock Cafe. Yes, Samantha dollie is going, too. The Rinaldi family brought homemade English “Luxury” Flapjacks – yum!!

Tavis & Kelly surprised us with Bravelets! A delicate, feminine one for me and the perfect leather strap band Phillip likes to wear with the words: Be Brave. They came in gift pouches with an insert that read: Our mission is to help people be brave during hard times. Proceeds from these Bravelets were donated to the Prostate Cancer Foundation by Kelly & Tavis. Thank you so much!! If you’d like to help someone going through a challenging time, click here for more cool jewelry ideas by: Bravelets 

And many thanks to our sweet friend, Marji, who sent us this note: “My friend is leaving for Jerusalem in a few days. I sent a prayer for Phillip’s recovery and to many more years of blissful love for you both. She will put it in the Western wall. Here’s to a miracle.”

Wow!! We are so grateful for our family & friends!!

Update: April 8, 2016

It took 2 days to get over the shock of March 24th.

But pulling ourselves together for this weekend was critical because Easter celebrations were the 27th & our daughter’s 11th birthday was the right after that.

And what could be more invigorating than being uplifted in song with our congregation and then celebrating with excited kids!!

So Phillip & I kicked our misery to the curb and embraced all that’s great in life – family, friends, feasting & festivities! 

A week of great memories were created and then reality set in again.

Phillip was tested again on April 6th.

The results showed his cancer is on the move, aggressive and his number is rising.

So this morning he underwent a 3rd full-body MRI – this time with IV contrast. Large plates were strapped to his thighs, pelvis and chest and his head was put into a V-block so it wouldn’t move at all. Another plate latched over his face with an opening from his eyebrows to his bottom lip. Then they sent him inside the torpedo tube for nearly 2 hours! My husband is not claustrophobic but he says the experience, the noise and the aching & cramping in that tightness is physically & emotionally draining and, most definitely, daunting. These scans will determine if the stray cancer cells have latched onto anything else like bone.

On the 12th, we’ll be back at Sloan where Phillip will receive 2 injections under his rib cage. Oww. Chemical therapy will begin the 12th. 40 rounds of radiation to follow. I love him, dear God. Please hear me. Please let Phillip keep being strong and positive. Please give him that strength. Please. 

The Bright Spot – Our friends give us amazing strength!!!! Michele just sent this Miracle of Healing in Phillip’s honor and the Lanese Family sent us these books & an awesome documentary by Kris Carr, click: Crazy Sexy Cancer to find out more about how this beautiful & resilient young woman deals with her incurable Stage 4 cancer & lives life to the fullest!!

It was the dose of positivity we needed as we head into these uncertain times.

Looking forward to health again like these carefree days not so long ago!

Update: April 12, 2016

Left this morning for Sloan. Seriously, everything done at Memorial Sloan Kettering is done beautifully, even their services like complimentary valet parking to make your life easier.

Great news about the MRI on Friday! The cancer is on the move but has not latched onto any bone – the 1st place drifting prostate cancer cells like to go.

Still waiting for the test results from today but we are in great spirits about the “no masses, no internal lesions, no latching” comments from the oncologist!

As the good news rushed over us like a flood of purifying water, Phillip prepared for his treatment. Yeah, he looks so hot to me even undressing for something so scary…but I had to quickly snap back to reality so we could get our heads in the moment for some deep breathing and hand holding to ease his pain.

Phillip had the 2 injections in his abdomen on either side that turned red and inflamed &  formed hard golf-ball sized pockets of medication that will drip into his body over the next month. More injections to come and still waiting on more results.

When we returned home hours later, a huge box sat on the front porch.

H-U-G-E!!

A gorgeous, super plush, ivory white, poofy, snuggly, incredibly soft, humongous Pottery Barn polar bear sleeping bag for Darling from one of my best friends since high school – Sonja in California!!

What a real pick-me-up for the day!! She just wanted to send a little comfort to her during Daddy’s bumpy journey.

The Bright Spot – Big thanks to Stephen Bennett for praying with us, thank you to his sister, Debbie, for the documentary & books above, thank you to Scott Davis for your daily prayer email, thank you to Denise for your novenas, thank you to Sonja for “Snowball” & thank you to Ray Pcolar for flying up from Florida just to visit with Phillip!!! All of these friends here I have been blessed to know over 30 years & marvel at the outpouring of support and action. All of our friends amaze me!! Thank you!! Thank you!!

Update: April 28, 2016

This weekend, Ray visited from Orlando. Out of the country for a while, he booked a flight as soon as he found out about Phillip. So grateful for our friends! Spent yesterday at Sloan discussing the upcoming radiation protocol, the creation of the pelvic cast & tattooing, etc. Today, Phillip underwent a colonoscopy to ensure his colon is strong enough for radiation. He is not allowed to have a colonoscopy for a year following radiation because it will become weak from the treatment.

Although rare, radiation can burn the bladder & colon. We do know someone who lost his bladder following radiation. In order to minimize the damaging effects of the chemical injections & radiation, Phillip has increased his use of Essaic tea – which takes 12 hours to make!! – grape seed extract, liquid calcium/magnesium, essential oils, dandelion root tea, Frankincense and anything else that is natural & healthful. He smells like a lemon sage herbal garden when he walks by.

We spent last week watching the new 9-part docu-series, A Global Quest, by The Truth About Cancer and definitely learned supplementing this traditional medical route with alternatives has incredible benefits.

Let’s talk about sex…

If you scroll back up to the December 11, 2015 update, you will recall nerve-sparing was the key to continued sexual function. But even those nerves that are spared, we learned, go into “shock” from the surgery. Picture a flower blossoming in reverse back to a bud. That’s what these delicate nerves do. They close for up to a year. A year!

So it is imperative to get blood to the nerves to not only keep them alive and healthy but revive them eventually, Godwilling. In the sexual recovery department of Sloan and all other hospitals that perform prostatectomies, medications and injections can achieve that goal shortly after surgery. The hope is that the nerves revitalize in a few months to a year and supplementation won’t be needed. 

But what is needed is activity to stimulate the tissue in the nether region or the tissue can perish. According to the doctors, the area needs to be stimulated a minimum of 2 times a week, maximum of 3. (Sometimes I wonder who’s making this stuff up…) But taking my vows seriously, you know, “In sickness and in health,” my job is to stay adorable and “helpful” during this trying time. Add to this the challenge that during the HRT/radiation period, the chemicals injected into his body are making his testosterone hit rock bottom for a while. That means I need to up my game. Hummm.

The Bright Spot – Approaching this responsibility with a positive attitude & designer nightgown!

Update: May 16, 2016  Hampton Respite

In the 16 weeks since Phillip’s surgery, we’ve been back to the hospital 24 times including a 3rd full-body MRI and chemical injections. By the end of March, Phillip’s PSA level was tested 4 times, and on each occasion the reading went up!! Having had the prostate removed, the PSA level should be undetectable. When the 4th result came in showing an increase of 77% from the first post-surgery reading, we were really unnerved.

So Phillip surprised me with a weekend house in the Hamptons. The Atlantic was our backyard! If you squint, you can see the kids looking for shells by the water’s edge in the photo above       . 

He wrote on his blog (Phillip’s Journey), “I wanted my wife to have some down time, as she has been carrying the burden greatly. For those of you who know her, you know she loves deeply and has deep emotions. This journey has been tough on her, and I wanted her to unwind more than anything. I
didn’t realize how much I needed this, too. We spent the weekend in an idyllic beach home with glorious weather. We chilled, played board games, grilled fresh salmon & steak, we talked, we walked, we flew kites, we gazed at the ocean & listened to the breaking surf, we delighted in the laughter of our daughter & her friends playing in the sand, running down the beach, rescuing overturned horseshoe crabs, and we reveled in the pure joy of beach life.

And the really good news… my latest blood test last week shows that my PSA is now undetectable. So, 40 rounds of daily radiation begins in June, then another round of chemical injections, and my plan is to have kicked it to the curb by then….Cancer out!”

To think Phillip was again worried about me when it is he going through all this agony! How incredibly loving, how completely appreciated!! This weekend was the respite we all needed.

The children made s’mores before watching family movies and Darling played her latest instrument, a Seagull Merlin she just stenciled.

Smoked salmon for breakfast & chocolate-dipped strawberries at lunch. More kite-flying, even by my Mom, exploring the Bay, and proper burials & prayers for horseshoe crabs that were found washed ashore. The children crafted their own crosses from beach wood and sea grass. 

    A little bit of shopping and a REALLY windy ride back on the ferry completed the long weekend.

 

 

 

 

The Bright Spot – We all feel rejuvenated! 

 

Especially Phillip, he looks fantastic!!!!

Thank you, my Love!

Update: May 18, 2016

My amazing sister organized TEAM PHILL with ZERO CANCER.org for the Boston RunWalk to support Phillip on his journey: http://support.zerocancer.org/site/TR/RunWalk/RunWalk16…
 

Thank you to my super duper sister!!!

The Bright Spot – My sister, through & through. Love you!!! xoxoxoxoxoxo

Update: May 23, 2016

We had a 2 week window between Phillip’s last chemical injection and the start of his radiation. It will be 40 rounds of daily radiation from June through August. He wanted to see his Mum, click: P’s Mum. Everyone needs their Mum at a time like this!

Phillip’s mother was overjoyed! Her 89^th birthday is in June and she said seeing her son was the best gift ever!

So we took our little one out of school late May/early June for this family emergency and visited relatives in Europe. Aunts, uncles, cousins, nieces, nephews, Godchildren, close friends, everyone we could see within 2 weeks.

Naturally, everyone we saw wanted to know how treatments were going. We could not rehash the details over and over. Not only is it draining for us but we didn’t want these conversations to overwhelm or frighten our youngest. Most of the time, we can shield her from it but when you’re traveling from home to home – or pub to pub, as is the case in England – folks want to catch up and we’re very sensitive to little ears in range.

We stayed in close contact with her school, as we always do. Her wonderful Principal, amazing teachers and Mrs. K in the front office have all been incredibly supportive throughout these challenging months. In an effort to reclaim normalcy, we made plans to do fun things between or while incorporating these visits.

While staying for an overnight with dear friends about a hundred miles south of Scotland, we ventured with the girls to a nearby castle where parts of Harry Potter & Downton Abbey were filmed, click for this story: Castles & Angels

Later, we drove nearly 300 miles south to Oxford to visit the university and delve into the history of this beautiful medieval city, click for that story: Oxford

And because our budding marine biologist, during these 2 weeks, would unfortunately be missing a highly-anticipated field trip to the beach to explore the biodiversity of the water’s ecosystem, we wanted to do something special for her and booked her for Seatrek at what’s known as Europe’s 1^st Seabed Walk, click to see more: SeaTrek

Her 5^th grade teacher kindly allowed our daughter to give a full presentation to her class on the 3 adventures above & what made each so special. Thank you, Mr. K!

And speaking of 5^th grade, the Friday we left for the airport was the same day her class was split into just girls/just boys earlier that morning for “The Talk.” You know the one. Menstruation, growing bodies…

But unlike the lecture we had in school when I was that age, this talk was not only about girl stuff…but boy stuff, too! Would be shocking, but the school explained that with the advent of the Internet, kids see much more than we did at this age and need to know more material to educate and protect themselves.

Humm… Still found it shocking. But it certainly made for fits of laughter – of which we need much of

these days – and especially with a silly 5^th grader! as we passed by unassuming pubs like the Dandy Cock, or were served 

   
Nobby Nuts (salted peanuts) or when we read Spotted Dick on the menu – a British sponge pudding made with raisins & served with custard – but I mean, seriously, come on!!

The Bright Spot – Everything is fodder these days!

Update: June 12, 2016

Heading back. A big thank you again to Shawn & Bita of Vitesse Worldwide for sending roundtrip limo service to make our journey easier on Phillip. Their generosity & thoughtfulness has been unsurpassed. One less stress to deal with on a long journey, thank you both!!

We flew Thomas Cook. Premium was delightful & spacious. The bag that held the accessories was a padded, zippered case that could also serve as a tablet protector. Premium offered proper utensils, good food and roomy comfort. Even cool salt & pepper shakers. This long-haul airbus A330 was 2 stories. 5 extra lavatories downstairs. Doesn’t sound riveting but it is exciting to find an unexpected lighted swirling staircase to the unknown 5 hours into a long journey when you’re tired & bored. Would have been cool to be a restaurant but I guess that’s pushing it.

Update: June 14, 2016 Keeping as upbeat as possible under these circumstances. Maria sent this lovely card after an event.

Update: June 15, 2016

Preparing for Salvage External Beam Radiation via Image-Guided, Intensity-Modulated Radiation Therapy (IG-IMRT).

It will be 40 days.

Every. Single. Weekday.
  

<Phillip arriving for his simulation day – he’s as cute as pie! I love this man!!

His body was tattooed in 4 places – above the navel, below in the nether region, and on
both hips. The tattoos are known as placement markers.

A special cast was made of his pelvic region complete with space for what Phillip refers to as his Love Bump. Nice.

The custom cast lays across his pelvic area and lines up to the placement markers to ensure pinpoint accuracy of the radiation beams each and every day. The holes along either side of the cast are bolted to the table to make sure he doesn’t move an iota.

The whole radiation process every day takes around 120 minutes from start to finish – from voiding the bladder, measured water intake, bladder retention, preparation/cast placement/table angle, TrueBeam treatment, etc.

Update: June 19, 2016  Father’s Day

Only THE most relaxing gifts to promote calm & peace for the Great Dad of these great kids!! 

 

 

 

 

 

 

 

 

 

 

 

Update: June 26, 2016 Our Wedding Anniversary

We decided that until the fatigue & side effects kicked in – doctors said in about 10-14 days, we would to do as many fun things as possible during these summer weeks. At the Top of the World in the Freedom Tower… 

Thank you, Elise, for flying in from Texas to make sure Phillip was doing okay & to Iman for visiting before heading to Houston!

Update: August 2016

“Let’s Talk” Numbers:

Between November & August, we will have been to Memorial Sloan Kettering Cancer Hospital 146 times in just 9 months!! With more dates on the schedule…

At this point, the cost of surgery, hrt, radiation, doctor’s visits, etc., is nearing $300,000.00 of which we will be out of pocket $42,000.00. 

That’s a $21,000.00 per year deductible and since our insurance runs to July 15th each year, this means that at nearly $4,000.00 per day for radiation, we will hit our yearly deductible of $21,000.00 in just over 5 days!!! One could say an emotionally & financially daunting time.

***************************************

Injections of Degarelix – a hormone-based chemotherapy – cause golf ball-sized burning pockets under Phillip’s ribcage in his abdomen. The skin is hot to the touch and the pockets of chemicals release into the body for weeks, to be later followed by other hormone-based injections. Among the side effects are blitzes of feverish heat/sweats.

Now we have synchronized hot flashes!!!

Yeah, not kidding.

Phillip – who’s been Batman these past 17 years – stuck a Batman sticker on his cast. His medical team was cheered by his positive & determined attitude and remarked that he is the 1^st adult to do that with his cast; the comment was bittersweet as I thought about the children who endure this difficult treatment. As the saying goes, we’re not admitting he’s Batman but you’ll never see the two at the same time: My Caped Crusader

In addition to all of the chemical injections, the radiation adds its own list of side effects. My high school friend, Megan, who had breast cancer, was instrumental in helping us with radiation advice. She also told us her frustrations when someone had said to her, “Cancer-lite” when she told them the type of cancer she had. Phillip’s 1st wife died of breast cancer at 36. When people say to us “it’s only prostate cancer,” they don’t realize 30,000 men die from it every year. It’s the #2 cause of cancer death in men.

God called Megan home on July 30th. It was a very rough day for all who knew and loved her. God bless you, Megan, and your family. Thank you, sweet friend, for your advice, encouragent and prayers. xoxo

    

Phillip took all of Megan’s advice. He’s done remarkably well considering the burns on his front, open sores on his back region, bleeding in between, nausea, diarrhea, memory loss, lack of concentration & fatigue. We were pre-warned of all of that. Phillip was just prescribed Silvadene for the sores. The oncologist said that’s where the radiation beams exit the body in the back. Plus, he has sensitive skin with any sun exposure, so the beams are causing this raw, sunburn-like effect on his skin. Again, we were told about this in advance. Sloan’s paperwork also said it could take up to half a year for the abdominal hair to grow back. And his red & white blood cell counts are down – hence, the compromised immune system.

Again, all to be expected.

Why? Because Sloan prepared us:

   

A tech out of state said she didn’t understand why Phillip had such fatigue. She didn’t understand why his skin was so raw and why the oncologist prescribed medication. She said most prostate patients “sail” through radiation. Really? Is she there at night when the patient is feeling the fear of having cancer. Is she the one sleeping with the loved one whose life has changed forever? Is she the one on the table whose cells are being fried to oblivion in the name of health? Is she the one who has to change her diet to accommodate abdominal issues? Is she the one who had to get tattoos to remind her forever that her body was stricken with cancer? Is she the one with abdominal pain, nausea, etc.? No. She’s not. So that sailing? She’s not in the boat so she shouldn’t comment on it. Enough said.

To prevent nicking his soft internal organs like the stomach, intestines, colon, etc., he basically could eat no fruits, no vegetables, no grains, no gravies, no sauces, no fats, just soft stuff like applesauce, proteins, broth…

(On an “up” note: although the radiation has burned away the hair in the abdominal area, the chemicals have been making the hair on his head grow thicker and it’s coming in black! A phenomenon the doctors can’t explain. Weird, but he’ll take it.)

Update: August 15, 2016

Phillip finishes radiation today!!! He was told he can keep the cast. “Some people keep it, others throw it away,” we were told.

We will destroy it!!! And we look forward to doing so!! CANCER WILL NOT SUCCEED!!!! We plan to go to a public outdoor shooting range and symbolically & physically destroy that cast. 

Phillip didn’t realize he would be this emotional this last day of radiation. Tears streamed quietly from the outer edges of his eyes to his ears as he lay clamped to the table listening to Kid Rock’s Only God Knows Why. Really loud. Phillip said, “I wanted to have a track played that signified my journey and my feeling.”

His radiation team said his choice for the last song was really powerful.

He edited the 5:30 track to 1:30 minutes:

(“Only God Knows Why” is a country rock ballad recorded by Kid Rock in 1998 on his album Devil Without a Cause. Written by John A. Travis, Matthew Shafer, R.J. Ritchie. Thank you, Kid Rock, for your music, your passion and your talent.)

Phillip didn’t realize how emotionally devastating this summer has been! And yes, he kept working, too!

He was surprised by a bunch of delights, a night of comedy in NY, a couple’s massage, etc.  

Later, he took his cast to the front yard and painted it neon yellow, then black so we would be able to see the marks of impact.

Then we headed upstate to the outdoor range.

Phillip’s competitive target shooting in England years ago (left) & obliterating the cast (right):

          

The Range Master announced on the microphone what that peculiar thing was out on the field. He said, “This man has just finished cancer radiation. He invites anyone who wants to shoot at this cast to feel free!” For 2 hours, person after person after person stopped by to take aim. Later, each would share how cancer touched their lives.

  We’ve had a lot going on these past 8 weeks – 3 funerals, our anniversary, graduation, parties, Father’s Day, 4^th of July celebrations, birthdays, and even my car breaking down on the highway when it was 104 degrees! Hello, tow truck!
Thank you, Maira, for lending us your car so we could get to radiation!!

Phillip dove headfirst into conventional, holistic and alternative treatments. Thank you to Lisa at Forza 5 for your healthy wisdom.

Although the rigorous treatment is complete, testing will continue every 3 – 6 months for 5 years.

 

Recently, I was at a Mom’s Night Out dinner & the evening came to a close. The waitress came to the table, “Excuse me, who’s Bianca?” Surprised, I said me. She said, “Your husband phoned & took care of the bill & says he hopes you ladies had a great time.” The waitress looked at our stunned faces, “Yeah, we never heard of that either,” she said, “we’re all swooning in the back.”

Phillip never ceases to amaze me. He’s going through so much and stops to think of me. I love you, Baby!

Last week, we were at a friend’s who said a woman commented to her that Phillip must not have been so ill with his Stage 3 aggressive cancer because no one can be that positive and still dote on his wife & kids and be so happy and kind.

Humm. Well, actually, that is precisely why & how Phillip IS so well – he has healed beyond the expectations of his medical team – the surgeon, the radiology oncologists, the other doctors and nurses who gave their all to make him well – and his remarkable healing was done in record time! He has said from Day 1 – the power of the mind can heal the body & soul! Phillip has The Most Optimistic Mind I’ve ever seen.

So step aside, negative person, because that’s not a space we choose to be around.

He chooses to be happy. Yes. It’s a choice.

Just read our stove top.

Update: September 10, 2016

A good friend of my sister’s donated $250 to the Boston Zero Cancer Run/Walk-a-thon in honor of Team Phillip. We are so grateful to her for her generosity on behalf of all men going through this. I normally wouldn’t mention the amount but it has relevance to this story. It was the highest donation of the campaign and he had never met her before.

Later that day, Phillip saw her name on 2 more donations over 50 dollars. He called my sister to reach out to the woman.
“You’ve done so much for me and had never met me before this weekend. Why would you want to donate even more, and twice?”

She replied, “I didn’t. My children did. A few months ago, I heard from Bianca’s sister that you were suffering, so we pray for you as a family each night. They wanted to help in some way.”

Her children are 6, 10, 14 & 16.

The Bright Spot – God bless this woman who is teaching her children empathy, compassion, goodwill & benevolence.

Update: September 13, 2016

A visit to Sloan with the surgeon left us with mixed emotions. Phillip’s results from yesterday’s test on the 12th looked good. I thought.

But the doctor said, “The numbers can be masked at this time. From the chemicals in the injection & the intense radiation therapy.”

Phillip will be tested every 3 – 6 months for the next 5 years. We are looking forward to the “Official Cancer Survivor” title in 5 years.

The Bright Spot – We have each other & a positive attitude. Our spirits are up despite the challenges.

Update: September 26, 2016

And might I just add – my dear husband even hit his sales target at work one month early despite surgery, chemo, complete exhaustion & radiation. Well done!!! He went to work most days during this radiation process except on those days he just couldn’t lift himself out of bed.

Today he pulled in THE biggest order in the history of the company he works for. Nearly half a million dollars for them. I don’t know how he does it. How he finds that last ounce of energy to make the deals. I toast to my husband. You are my Bright Spot. 

Update: August 8, 2017

It’s been quite a while since I’ve written and there’s a reason for that. You may recall me mentioning a friend, Fred, who lost his wife to cancer years back. He’s been there for us every step of the way. Writing, praying, lighting candles, and reaching out to make sure I was okay, too, since he knew all too well what it was like to be the caregiver. The burdens, stress & sadness seeing your loved one go through pure misery and feeling completely helpless.

Fred gave me great words of wisdom at just the right time. He said if I got too immersed in this disease, it could pull me down. I’d be no use to anyone. My husband. My kids. Myself. He advised stepping back for a while. And he was right.

So from September 2016 till August 2017, I’ve been just as active caring for my husband, but I’ve not spent time writing about all the experiences – a practice that usually gives me great relief, but pulling back was the right thing to do at the time.

But now I’m back and here’s a look at what’s been going on these past months.

Hand in Hand from the very beginning… then & now:

   

Following Phillip’s 40 rounds of daily radiation, the surgeon warned it could take up to a month or more to come out of the fog. As clear as Phillip seemed on a day-to-day basis, when he’d look back at an email at work or a conversation with a client, he sometimes drew a blank. No recollection. Fogginess. Lack of concentration.

Amazingly, he still pulled off great deals for the company he works for but it completely drained him along the way. And when he was recovering from surgeries or just too weak, he still worked from bed.

But the radiation didn’t just muddle his mind, it took a toll on his body. He required a repair surgery in January 2017 that would be more painful to recover from than the life-changing radical prostatectomy the year before, January 2016. This latest surgery had him bedridden for weeks and doctors told him the recovery would be at least 6 weeks. It was.

These days, he can’t sit too long, stand too long or cross his legs comfortably. Life for us has changed significantly but we are holding up as best we can. There are good days and challenging days.

Phillip just met with his first surgeon (from 1/16) last week. The doctor had written a white paper on his belief that hitting men diagnosed with very aggressive prostate cancer with all 3 major forms of treatment – surgery, chemo/hrt, radiation – gives the best results for preventing metastasis and saving a man’s life in this situation. Let us remember, approximately 30,000 men die each year from prostate cancer. It is the 2^nd leading cause of cancer death in men.

Phillip had received those words – “You have Stage 3 very aggressive cancer. Your numbers are bad.”

Why? Let us also remember that was because he had the cancer for 3 years before ever even knowing it because our doctor forgot to tell him (See the February 2, 2016 Update). Yes, we are not letting that slide. The cancer was there for so long, it broke out of the wall of the prostate – out of the “prostate shell” – and moved into the nodes. Pathology results confirm three nodes showed positive signs of cancer. The surgeon told us there’s a 70% possibility of recurrence of cancer in the future within this group. Yes, of course, we will focus on the 30% rate of success but it’s always in the back of our minds!

To lose body parts including prostate, lymph nodes, a major percentage of nerves & have other parts resectioned, is a total mind & body reconditioning in the healing process. 

And because of the urgency when Phillip finally found out he had cancer, his surgeon booked him in for the operation within weeks of our initial meeting, then hit him hard with all the treatments in a matter of months! Too often, the surgeon said, men are given radiation. The cancer goes away. Then comes back. They are then given chemical treatment or surgery, the cancer goes away. Then comes back. Whatever order, the surgeon wrote in the paper, when treated piecemeal, the cancer often comes back. (Not always, but often enough). So Phillip’s surgeon was beaming last week when he saw him – now more than a year later – looking so well and showing numbers that looked good.

He will be tested every 3 months and monitored for 5 years before getting “cancer survivor” status. As of last week, the surgeon said his testosterone is back up at great levels.

But as well as he feels, as I said, the cancer is always in the back of Phillip’s mind. We are not allowing cancer to be “our story” and defeat us. No! We have lifted ourselves up with all of you surrounding us with love but we do live realistically. Let me put it that way.

And although I haven’t written in a long time, people have not stopped writing to me. (I respond to everyone). For I have said all throughout this journey, if our story – as candid as it is – could help just one person, we are happy to be here for you. This email arrived this week: 

Just as this story began with Phillip feeling alone and finding out all of you were behind him, I’m so glad Ann knows that she is truly not alone. May we all take a moment of silence to wish Ann peace as she continues this difficult healing process.

It’s been a long, hard journey for us. We’ve put on a brave face for our children and the outside world when we just want to cry on the inside.

My sister, one of Phillip’s most ardent supporters, surprised him with a homemade cake that says it all!

 

 

If there’s one thing I can say about my sexy beast, he’s kicked cancer’s ass & continues to blow my mind!  That’s one strong man!!

 

 

 

 

The Bright Spot – I suppose, in the end, adversity produces strength. We are approaching this next chapter in our lives with great strength. If you have any questions, need encouragement or would like to reach us, just email me (see nav bar above).

 

 

Update: December 30, 2018

I know all of you have been asking me how my husband has been doing this past year and I’ve been giving the general “fine” answer but, in truth, we were hit with some bad news 3 months after my last post and knowing what we had to face in the coming months, I just had no energy left to write.

My sweet Phillip is now Stage 4 terminal.

 

In November 2017, a nagging pain in Phillip’s lower back since that July proved what we already dreaded. Metastasis. A word no cancer patient or loved one wants to hear. Especially after the pounding of drugs and radiation and double surgeries.

From July – October, the oncologist would not give him an MRI because his blood work numbers were deemed “undetectable.” They kept saying perhaps his back pain was arthritis. Phillip had blood drawn every 6 weeks. He’d press his finger on one vertebra throughout the day and say, “This hurts. It’s a constant dull pain.” We knew but were hopeful.

An October blood draw changed everything. His PSA numbers rose. After that, they rocketed. The look on the oncologist’s face made our hearts sink. “What is it?”  “Well,” he said, “your numbers are rising but it’s not the number that’s of concern at this time, it’s the trajectory of the increase between your blood tests.”  

From January 2018 – April 2018, he was booked for another radioactive pet scan after which he stayed in a hotel again because of his radioactivity. He had more MRIs plus, a painful lumbar puncture where they strapped down his face, hands and feet (photo above) and then shook the huge table side to side to move the liquid injected into his spinal canal above & below the L1 vertebra. I was just beside myself.

In May, he underwent super-intensive radiation. What do I mean by that? When he went through the 40 rounds of radiation the previous summer, the beam temperature was 180 degrees 40 times. This was 3 times of radiation but at 900 degrees. It absolutely drained him. For months. His doctors said that was to be expected. Also, he can no longer lift anything of weight. They explained the outer “scaffolding” of the vertebra is still there but the inside is compromised so any weight can collapse it. What! The doctors explained they would cement it back together if that happened. Double what!

This man has been through too much! Between being drained from the double surgeries, chemical therapies/hrt resulting in long-term brain fog, hormone deprivation dropping testosterone to zero, no energy, ongoing painful procedures, injection therapy, loss of muscle mass, loss of strength, overall physical & emotional strains, over $500,000 in medical procedures, and double radiation therapy ALL WHILE CONTINUING TO WORK, an attorney in a recent deposition asked Phillip why he was fatigued. Triple what!!

As you may recall, Phillip wasn’t a candidate for standard proton beam radiation or seed therapy because his cancer was the most aggressive. Why? As you may recall from the story above, 3 years prior to us finding out he had Stage 3 aggressive cancer, he was at his 50-year-old annual physical and the doctor never sent Phillip to a urologist after his PSA reading came back “HIGH ABNORMAL” in all capital letters from the hospital. THAT previous blood reading, my friends, we   only found out THE DAY BEFORE his 1^st surgery. And so, we have been through the ringer these past 3 years and now my husband is Stage 4 terminal. Please keep us in your prayers.

The Bright Spot – Thank you to all who have followed this journey. We are grateful. And thank you to Shawn at Vitesse Worldwide for taking Phillip on a boys’ day out for lunch on Martha’s Vineyard.

Update: May 2019 – April 10, 2020

Thank you to everyone who has asked how Phillip is doing & how we are holding up. In 8 months, we suffered 6 significant passings & attended 4 funerals. And we had something devastating happen September – October, too, but I don’t want to go into it. It’s over now.

May was miserable. On the 5^th, our beloved kitty, an old, deaf girl, suddenly developed a blood clot and went over Rainbow Bridge the following day. My heart was crushed. Crushed!!

On the 9^th, I was with my sister in the hospital for surgery. After 15 years of pain, a new doctor finally discovered on her parathyroid – which should be the size of a grain of sand – a tumor the size of an apple! Every doctor prior missed it. What the…!!

The following day, as I was tending to my sister for recovery, Phillip called with the devastating news his cancer was back! And the numbers were rising considerably fast! You see, it’s not the number itself but the rate of rise within a certain amount of time that causes oncologists great concern.

He was immediately scheduled for a nuclear MRI and a PET Scan June 7^th & 8^th where he would again be out of the house because he’d be radioactive and cannot go near teens or me. This photo shows the lead encasement around the nuclear material to be pumped into his veins.

With his rising numbers hanging over our heads, I continued to care for my sister during recovery while also caring for her dogs and making sure everyone at home was happy and okay. I wasn’t okay. I missed my kitty so much but I had to be strong for everyone so I persevered onward.

May 17^th, I was deposed for nearly 4.5 hours. Much of it had to do with my sex life. Sex talk doesn’t bother me. My background as a psych major, journalist, radio show host, writer and human development aficionado makes talking about sexuality and human function as effortless as brewing a cup of tea.

I didn’t need a break and the deposition went right through lunch for hours. The only time I was pulled out was because I was talking too much. But I just tell it like it is. And believe me, I’ve got a lot to say! Because what did bother me was not the content but the fact that I was in that room in the first place with lawyers talking about my dying husband! This should have never happened!! He should have been told of his high PSA result years ago so he could have had the ability to take action and get well.

Now when he goes downstairs while I’m dozing and I roll over and see his empty pillow, I try to get my head around the fact that this pillow will be empty one day sooner rather than later and I will need to deal with it. So I lift the heavy Culligan bottles much to his exasperation when he catches me, but I explain that I’m preparing myself for these heavier tasks. The oncologist told us to get our affairs in order so he’s been listing insurance policies, maintenance records, tax info. on cars, house, blah, blah, blah, all the stuff he’s taken care of for 20 years. We need to decide where he will be buried. Where my family plot is in the town where I

grew up or here in our town of 20 years where our kids can visit his resting site? We have the funeral home and director in mind. We are updating wills and looking into burial insurance. Very, very sad decisions to be making for oneself when so young!

June 11^th – the day of the results. We knew his numbers were rising too fast and that our meeting with the oncologist would not yield good news. We were correct.

Phillip’s cancer has now spread to his pelvis and his rib!! Immediate treatment required. Recap: prostate to spine to pelvis to rib. Yeah, we’re scared.

And time is of the essence. Sure, there are unique cases of beating the odds. But then again, there’s reality: case studies, statistics and the look on the doctors’ faces. Now Phillip’s greatest desire is to get to high school graduation. College graduation, weddings, grandchildren, those are dreams, of course, and bring on quiet tears. And yes, of course, we put on brave parent faces for the kids. But, in private, we cry. We are grateful for our constant amazing support from family & friends.

At my deposition, the lawyer claimed to have read my blog about our journey through this cancer misery – yet she asked if we had friends & support. The overwhelming support from all of you is a huge part of the story! And we love & appreciate it a billion percent!!

From May 2019 until December 2019: August, we went with a school family to our friend Jon’s (known 20 years) house in Narragansett for vacation, and the next Tuesday, my friend since college years, Elise (known 32 years) visited us from Texas; the following week we went with Sara (known 14 years) and her daughter to see Frozen on Broadway with our family. We had dinner the last week of July with Geri (known 23 years) along with my mom, sister and niece; and earlier this month, dinner with Em & Gary (known 12 years) followed by lunch the next day with Lorine (known 30 years) & Mark. The Thursday prior, I had dinner with Kim V. (known 20 years), followed by lunch with Scott D. (known 36 years); and a few weeks earlier, we had lunch with Danny (known 54 years) and Joanna (known 38 years), and lunch with my roommate from Texas, Jill N. (known 24 years) who now lives in Ohio who visited with us in New York City with her new beau; and the following week, sushi in the City with our great friend Jane F. (known 8 years). Sadly, I saw my friend, Sue P. (known 40 years) at her mother’s & then sister’s funerals just a week apart and her sister died of cancer! These past weeks, I’ve corresponded via phone call, text, messenger &/or email with Trish P. (known 25 years) trying to organize a Florida vacation with her family, Peter T. (known 28 years); my television agent, David (known 24 years) & Kenn V. (known 30 years), my television consultant who was tough as nails but has a heart of gold. Plus, we went to a wedding end of August (known the family 20 years) & just had lunch with our close friend, Susan J. (known 20 years) in the City late September. Of course, lunches, dinners and tea with friends throughout October and November including Sara (known 14 years) first weekend of November, Kerrie (known 7 years) same weekend, mid-November lunch with George & Louise P. (known 30 years), my old managers – not that Louise is old!, she’d hate that haha; and dinner November 15th at the Stathams (known 12 years) which ended in hugs & tears from worry over Phillip’s future; Thanksgiving celebrations over 4 days with family, lunch with Danny, care visit with Geri, and brunch with Barry (known 14 years) and his family. December 2019 was full of wonderful family & friends, including a lovely birthday party for Phillip and then the monumentally-super surprise visit from our son in the 82^nd Airborne Combat Aviation Brigade as he shocked his sister at school on the last day for the holidays! Keep reading & you’ll come to that momentous reunion video in this story.

We are surrounded by marvelous family & friends in a phenomenal support system and we never take it for granted!! If there is one thing you know about me it’s that I’m a deeply loyal, faithful friend who values & loves communication.

One of Phillip’s treatments will be Zytiga, currently, $10,200/month. With insurance, the copay makes it $2,880 every month. His treatment to date is over $600,000. Insurance premiums have been $21,000 – $30,000 each year these past 3 years. Denied any raise in 10 years even though he’s a top producer takes a toll with these numbers. Cancer stinks. Not knowing you’ve had it for 3 years is inexcusable and unforgivable!!

After our dinner with Em & Gary in September, we were driving home and Phillip’s cell pinged. We hadn’t even driven a mile from the restaurant and these amazing friends had Venmoed us a few thousand dollars. What?!? When I talked with Em, she said, “I didn’t want Phillip to pass away and look back and say, ‘I wish we had done something, anything. We have a little extra right now and wanted to give it to you for the medication.’” It left us speechless.

To help cover our mounting astronomical costs, Phillip called a company that buys life insurance policies. You know those ads you see on TV day in, day out. Sell your policy for a few cents on the dollar but pay off your debts. He was denied 3 years ago when he first called when he was Stage 3. Now Stage 4 terminal following metastasis to his spine, pelvis and rib, he called again this summer and, sadly, the company has agreed to purchase the insurance policy citing his shortened life expectancy so they can get a return on their money. When the payment came in, it was gone within a week or so as we covered our medical debts, paid back special people who have been so good to us including Em & Gary, and set aside $62,000 for the tax!!! 

The company has taken my sister’s phone number and Em’s phone number to call every 3 months to see if Phillip is still alive. They only pay the premium every quarter till a person passes. It’s morbid yet matter-of-fact at the same time. That’s their business.                                                                                                                                 ********

Father’s Day – it’s always been special but now they are limited, aren’t they? Every holiday becomes more precious when you know time is running out. 

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In  In June 2019, our daughter completed Middle School with 96 As including 25 A+s earning the President’s Award for Educational Achievement for outstanding grades, intellectual development in accelerated math & science, achievement in music & commitment to her academics while balancing the demands & rigors of a professional NYC career. 
That night, my husband wept wondering if he’d be there to see her graduate from high school.

In July 2019, our son earned his wings as a Black Hawk engineer for the US Army and was commissioned to the Elite 82^nd Airborne Division, the best-trained infantry in the world called into action in extreme circumstances by the Department of Defense within 18 hours anywhere on the planet.

 

 

 

 

 

My husband had the honor of pinning the wings on our son, a duty often performed by the Drill Sergeant.

    

Again, later that night, my husband was reduced to tears wondering about his daunting future with this ravaging cancer.

After graduation, we brought our son home to spend 10 days and then drive his car to Fort Bragg to report for duty. But I thought it best to suggest he stay 6 wonderful days home instead of driving straight to North Carolina after 10, thus taking Dad with him for a special 4-day father/son road trip. It would be a super memorable experience together; Phillip’s time has been cut short and is limited and our son can be deployed at any moment. Our son did the driving to conserve Phillip’s energy and they absolutely loved their journey! Gettysburg, Washington, D.C., Fredericksburg, Richmond & Raleigh. Washington, D.C.: The Tomb of the Unknown Soldier, the Capitol, the White House, Lincoln Memorial, Washington Monument, the Pentagon and the Froggy Bottom Pub!!

In 2018, Phillip missed our family vacation because he started bleeding and had to undergo an intense procedure at Sloan. He stated emphatically that summer 2019 he needed a crystal blue beach to sit on and rest. We tried to book the Caribbean and the computer froze. The next day, the news was all about the sudden mysterious deaths on the Islands. Then we tried to book a trip to Mexico on the Yucatán Peninsula bordering the Caribbean Sea, but the day before our 20^th wedding anniversary, lightning struck our well pump costing us nearly $3,700 out-of-pocket!

So we got the message this was not going to be a “flying” summer and on August 1^st, I got up and exclaimed, “Pack some clothes, we’re driving to Canada!!”

Truly, one of the most marvelous trips ever with a built-in daily rainbow at sunset! A supremely packed 46 hours at Niagara Falls including Ziplinging at Niagara, click the blue Niagara link to see the amazing video of our daughter & Phillip: Niagara

   

As we headed home, we stayed at the Benn Conger Inn in Tompkins County, New York and cruised the Skaneateles River in Onondaga County, click here for that story: Skaneateles

An overnight stay and then we were home again with our year-round twinkling lights & the beautiful hanging basket Phillip gets me every summer.

I started laundry while Phillip passed out. Just too much for him in such a short span of time. 3 1/2 jam-packed days. His stamina isn’t what it used to be. He ached but tried not to show it. I saw his strain but I knew this was important to him.  It wasn’t the relaxing beach vacation he pictured but it was filled with memories we can all live on long into the future…whatever that future may be. Hopefully, he was dreaming of those beautiful Caribbean sunsets while he dozed by the fish tank. It’s September now and he’s bleeding again. His treatments are ongoing and he is drained. I will one day roll over to see an empty pillow. I will ache. I will cry quiet, burning tears. But I will have these beautiful summer memories & others so long ago to get me through those dark, sad days ahead.

The 24^th of September was one of the worst days ever! My sister’s beloved dog, Muffin, died in her arms as she raced to the emergency vet before dawn. Her itty-bitty precious pup passed away suddenly & unexpectedly, shattering our hearts. The same morning, Phillip had a chemical injection at Sloan, we had a house crisis at my Mom’s home and both my husband & daughter fell ill with a bad cold for 10 days while I continued to help at my mother’s house and console my heartbroken sister.

 I was exhausted by the start of October but was ready for our court date set for October 8^th. We’ve been waiting nearly 4 years for this date so I was more than ready. 4 years.

Then shockingly, out of the blue, we received online notification at 10:30pm Friday, October 4^th – 4 days before court – that our date had been postponed to January 2021 because the previous judge just retired/left a few weeks earlier and the change of date is not even allowed to be questioned.

Oh. My. God! 2021???

The oncologist had told us that although Phillip’s cancer has now spread from the prostate to his spine, pelvis and rib, he  would still “appear” okay until the last year – then it would happen quite quickly – he would become more foggy-headed, disoriented, his body would break down more rapidly.

Phillip knows this first hand! As you may recall, in the 1^st paragraph of this story, Phillip’s wife had cancer, looked really good – even had a healthy glow – and 11 weeks later, she was being buried. She was only 36!

Sometimes when I say to Phillip, “Ummm, you’re looking really good,” the room gets suddenly quiet and we look at each other and think ut oh. We can’t even enjoy him looking adorable anymore, everything has changed, everything is wrapped in angst for our future.

And now, with the court date set in 2021, the ability to face the doctor who neglected to tell Phillip he had alarming numbers at his milestone 50-year-old annual physical years earlier, 

who neglected to advise my husband to see a urologist for a biopsy, who neglected to track Phillip down to seek early prevention cancer treatment, now this ability to plead our case may go from a malpractice to wrongful death suit with such a long wait.

It’s not like we’ve filed a building complaint, a harassment complaint or an accident suit that resulted in injury. We are talking about a doctor who neglected to give my husband the information he needed to save his life! We always hear Early Detection Saves Lives! But we didn’t get that luxury! And now we’re on hold till 2021 when we don’t even know how long his life will be. I am just disgusted.

My husband is not feeling well. Phillip never complains. But now he’s starting to let me know. He’s just not feeling well.

And why do I still write about this painful journey? So it can help another person navigate these scary waters with more clarity and hope. So it can be their survival guide.

Sometimes I watch my husband leaning in the doorway behind our daughter’s piano listening to her angelic voice as she sings to her playing, silent tears streaming down his cheeks. She doesn’t see this. He doesn’t know that I’m watching him. Heartwrenching. It’s all just too much. Too much.

I look forward to our day in court to voice my word loud and clear. This doctor has robbed me of my husband and the father of our children. For shame!

November 2019 – the oncologist said to put our affairs in order, so we have updated our wills, interviewed financial planners to organize my retirement for the future, take care of our kids regarding college, weddings, and their kids. It’s been unnerving.

Phillip’s even put the snow blower up for sale because he can no longer yank the cord to turn it on. That type of tugging force can injure his spine where the cancer was radiated – we were told lifting something of weight or that kind of wrenching action can cause the vertebra to collapse. Then he would have to have it cemented together!

On the 100th anniversary of Veteran’s Day, Phillip and his team were at NASDAQ for the closing bell and, later that week, Phillip was invited for a cancer research project in Manhattan. The security person in the lobby asked him for his license and took a photo of him for his sticker ID. The project was on the 9th floor of the building. Our son had worked on the 6th floor with a company Phillip was trying to reach to take care of some other business prior to the project. So he went to the 6th floor first and the head of security raced there saying he was a security threat because he hadn’t signed the registry book in the lobby. This woman made such a big deal of it that she almost had him leave the building for not signing the log. And here he was offering his time to help other cancer patients on their frightening journey. Have we lost all common sense? It was pathetic and put unnecessary strain on him. He’s such a great man and all he ever wants to do is help other people.

The trees are up in our home for the holidays. We decorate as early in November as possible to enjoy for at least 2 months. It’s Phillip’s favorite season and his birthday is just before Christmas. He loves it. Watching movies in the evenings in the warmth of the twinkling lights, well, it’s the little things in life that mean the most, isn’t it?

  

Phillip asked me what I would like for Christmas. He said he wanted to give me something I will remember him by.

 

Oh, boy. I said, “It’s not happening now, is it?” “No, not yet, but when the time comes, the oncologist said I would be foggy headed and I want to be clear when I choose something special. It may be different next year. I remember how fast it was with Karen.” He wants something memorable like this. I really can’t think right now. It’s all just too much.

December 2019 – Much has happened since our miserable journey began. And the reality is that Phillip is dying thanks to the doctor who never told him about his alarming numbers. These days I hear new ads like come to our hospital and in five sessions we can treat your prostate cancer. Well, had we been given the news that he should seek treatment, we would have had the ability to attack it thereby resulting in a different outcome. But since his cancer was found by another doctor by chance 3 years later, his prostate wall had already opened up and the cancer went into his lymph nodes and throughout his body.

Now we are suffering the consequences of the 1st doctor’s inaction. All of us are suffering. My husband lives with the fear of dying. I live with the fear I’m going to lose my sweet husband. My children live with the fear they are going to be fatherless. 

Our son gave us the best Christmas gift ever! He surprised us for the holidays! 

Credit: Buddy Brown, Lyrics: Daniel Brown, Album: Deep South ~ Stop When You See a Uniform

Click this video below:

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As positive as Phillip tries to stay, he’s nauseous, fatigued and sad. Weird bruises & wounds appear randomly over his body including his head. Some just start to bleed then stop the same day. Others take months to heal. He just does not feel well. He also has blood clots that form in his bladder from the 40 rounds of radiation which doctors say can happen 3 years

on. And it’s been 3 years. Blood in his urine has been recurring. Some clots have landed him in the emergency room because a blockage can cause kidney damage and infection. And it’s painful. If the clots don’t pass, doctors would perform an uncomfortable procedure. He’s had a scope & camera through the urethral opening into the bladder where the doctor can see the clotted tissue. This particular emergency, thank God, was resolved when large clots burst from the urethra. Shock & relief when that happens. 

Phillip is not feeling well. Just as his wife, Karen, had done more than 2 decades ago, my husband has given me his blessing to remarry should I so choose. Intellectually, I understand why he needs to say this; emotionally, my heart feels pierced and my stomach punched as I cope with the realization time is running out .

Phillip & I during happier times…

                                   

But the reality now – my husband is dying. This is what the toll of cancer looks like.

January 2020 – Phillip had another nuclear MRI and full body PET Scan on January 3^rd.

He’ll continue treatments for the tumors on his rib and pelvis. Yes, he is definitely drained. Weary beyond his years.

In mid-January, we lost our beloved Uncle Danny. He was 88 years old and given a funeral with full military honors. When pall bearers were requested, Phillip stood up immediately. I reminded him he’s not supposed to lift anything heavier than a milk bottle because of his compromised lower vertebra from radiation but he was adamant that he would carry Uncle Danny to his resting place. He suffered consequences from that decision but he says he doesn’t regret it.

Later January, we received word our son was on the high-alert list to head to the Middle East if things didn’t simmer down. Phillip asked me what I wanted for my birthday and I said the only thing I wanted was to fly South to his base straightaway and hug him. We spent a wonderful long weekend with him and, thank God, events settled down and his group came off that scary list. And the really great news is that in addition to earning his Aviation Wings, he also has earned the Meritorious Unit Citation, the Presidential Unit Citation, National Defense Service Ribbon, Joint Meritorious Unit Award and the Marksman Sharpshooter Award.

It

 

 

 

 

 

 

 

It was a great birthday!

March 2020 – The Covid nightmare hits the States and by March 11^th, our daughter’s school closed. Phillip called Sloan – they advised him to work from home and take great care.

We’re in the tri-state area, now deemed the epicenter of Covid hell.

Everything is shut down except the essentials, and the venue where we were to celebrate our daughter’s 15^th birthday party moved her event to June.

Of course, she’s fine with it and all of the parents remarked that by then we will all be bursting for a super celebratory party! We made it as extraordinary as we could with surprises under the twinkling tree: (Click: Easter Tree). We even had scallops in the fridge and did everything to make her weekend special with the 3 of us.

April 2020 – We’ve sheltered in place for over 3 weeks now. I don’t mind because I love having my family home and I know this, too, shall pass so I’m soaking up the bonus time with my loved ones. It’s almost like a reboot to the 70s and 80s. Family time. Down time. A welcomed respite.

Our daughter is thriving on distance learning and using technology to stay connected with family & friends. Our son is on his base ready to help keep others safe. Our family’s been exercising together every day, enjoying all our meals together, completing projects, playing board games & watching our favorite movies and shows. And with our twinkling Easter Tree, it’s cozy, sparkly and comfy day & night.

    

Keeping in touch with friends and family is important. Zoom, Skype, Facetime, whichever works best for you. 

And be sure to exercise! We do so daily as a family.

We had enough supplies and food for about 30 days. It’s Day 31 as I write. School has been further cancelled until at least May 20th.

 

      I need to go to the store to pick up fresh fruits & veggies, etc., thank God for the extra fridge. I must resupply for another 30 days at home. 

New York is the epicenter of the virus in the United States. Our tri-state area is the hot zone. (Credit: CBSN) Currently, it is worse in New York (yellow line) than in Italy, the UK and Spain combined. The British Prime Minister just left care in the ICU. Funerals are on hold. This is an extremely serious novel virus and my greatest priority is not bringing this beast back to my house.

The US Surgeon General warned this virus rivals some of the darkest moments in American history. Phillip and I watch the President & his Task Force briefing daily as well as Governor Cuomo’s conference every day. The Governor says many Covid victims are dying alone because family members can’t be with them in the hospital, and that, as of April 24th, there were over 268,580 cases and 20,861 deaths in New York. The Governor also doubled the fine to $1,000 for those violating the social-distancing mandates. He said no one has the right to put others in harm’s way because of their own selfishness. Early April, headlines read FEMA was sending 85 refrigerated trucks to the City to serve as interim morgues. 45 are there now. (Credit: BillyPenn.com) And mass graves are being dug for unclaimed remains of Covid victims on Hart Island, Bronx, NY (Credit: John Minchillo/AP/Shutterstock)

With this information, I picked up gloves & a mask; I shopped for food for the next 4 weeks. Folks were covered with masks, gloves, plastic shields over their faces, it was so weird.

I went to 2 stores. In one, there was a looped recording overhead like one you’d hear in the airport – it kept repeating, “Stay 6 feet away from other shoppers, that’s 2-cart lengths away. Keep your distance.” I felt like I was in a dystopian movie. There were bins all over the parking lot with signs that read, “Dispose of all personal protective equipment in the nearest trash receptacle.”

I was glad to get home, drop my clothes in the washer, shower and finally relax!

Time for feet up on my recliner, calling one of our kitties onto my lap. There’s food in the fridge for 30 days, we have each other & we have been through worse. This, too, shall pass and brighter days are ahead!

The Bright Spot – I’m going to focus on all the good like special quality time with family & our cuddly animals. Please stay home so we can crush the curve & get this country going again! Appreciate your family, snuggle your animals and stay healthy & safe!

April 22, 2020 – A sweet Oma (Grandma) who lives in Canada we’ve known since our daughter was around 2 or 3 read the 8-month update and messaged me that she wanted to send a special gift to our girl. Terri said she was mailing our daughter’s favorite Dutch cookies she used to give her when she was little – Stroopwafel, wafers with a caramel filling popular in the Netherlands. Placed over a hot beverage for 2 minutes, the yummy caramel softens for a delightful treat!

Sadly, Terri lost her husband to cancer when the doctor misdiagnosed him when they were in their 50s, too. She knows 

exactly how I feel and how this affects our kids having had daughters of her own.

This Oma knew what our daughter loved and surprised her with this delicious pick-me-up. Clearly, our daughter was shocked and thrilled! So grateful, Terri!!

 

April 23, 2020 – I have known Marji for 9 years, a hardworking director at the ADL, Anti-Defamation League, in Connecticut and creator of the Name’s Day awareness & anti-bullying program in high schools across the nation – having had over 300,000 participants to date. Marji is a great friend and always there for me if I need her. Today she said her husband, Harold, would play the flute for a half hour to soothe and comfort. He has 

volunteered his musical talents to hospitals for years and with the nation’s shut down and our additional stress, he wanted to play for us. We took them up on this beautiful offer and all 3 of us sat on the couch to listen to gorgeous music. How lucky are we (lower right corner of the ipad)!

We are so appreciative!! Thank you, Marji & Harold!! This is a poster of an exhibit of Harold’s amazing photography – musical instruments in motion! You can view the photography here, click: Luminous Instruments

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The Bright Spot – And a very special friend, Frank, read the story and wanted to share his gift of voice with a special charity or group we support. The kindness and love friends have showered us with brings us through the darker days. Thank you all!!