Tuesday, February 28, 2012

Getting Caught Up


Sorry for delays in posting but a little something called "spinal fusion" and a self induced narcotic haze have kept me from writing, posting or even thinking about posting.  Funny, I had put off the surgery for 3 years, seeing accupuncturists, chiropractors, DO's (my personal favorite), and practically every other kind of doctor.  Unfortunately, the relief they provided was only temporary.  I met Dr Tamaris, a neurosurgeon in Atlanta, and decided, now, was the time.  He felt I had a very good chance of a complete pain free recovery. 

December 28, was our 3-level fusion date and then there was this little obstacle called CANCER

Of course, I was very willing, and even thrilled, to post-pone surgery for 6 months or more as Gregg's urologist suggested.  He wanted our thoughts, resources and energy to be spent deciding and following a plan to fight Gregg's aggressive form of PCa.  As I've stated before in previous entries, in the days following Gregg's diagnosis, we researched, breathed, and dreamed about PCa.  We read everything we could and listened to various doctor's suggestions and we did develop a plan. 

We were ready to get started. 

Eliminate cancer...every way we could!

Knowing the side effects of his cancer-fighting hormones, Gregg thought it best that we both be "out of commision" together, if you know what I mean.  Per his insistance, I scheduled my surgery February 3rd.  Thanks to our family, we made it through our roughest days.  Without them, I don't know what we would have done.

February 8th, was Gregg's 1st HDR, high dose radiation.  I thought I should include some images, for education purposed and mainly, because Gregg loves freaking out his male cohorts with these same images.  I relate this to how much guys like watching other men get their privates busted.  At least 1/2 the show of America's Funniest Videos is dedicated to this wierdo phenomenon. 

The pictures are graphic and are not of Gregg's procedure, just copied and pasted thanks to Google.

Gregg arrived at North Fulton Hospital promptly and met with Dr Banks, urologist and Dr McCord, radiation oncologist to go over procedure for 1000th time.  Gregg was taken to OR suite and given some pretty good drugs and spinal anesthesia.  Thank you Lord for anesthesia docs!




All of these tube looking things were precisely placed with tiny needles, by our urologist.  CT and ultrasound guidance (ultrasound probe in the rectum just to add to the fun) were used to place each one in the exact location.  Needles were removed and the catheters were left.


This is a picture of LDR with permanent seed placement, but you get the idea.  The difference in HDR, is the needles go into and through the prostate and into surrounding areas, i.e. rectum, bladder and seminal vesicles.  With permanent seeds, only the prostate is penetrated and the radioactive seeds are left.  For PCa which is thought to be contained in the prostate, this is the therapy of choice.  With high grade, aggressive cancer, the surrounding tissues could be invaded so they need to be treated as well. 




After everything was in place and double-checked by all physicians, Gregg rode in his 1st ambulance.  A stretcher, modified with a hole cut out for all the tubes coming out of Gregg's perineum, was his transportation out of the hospital and over to the radiation center.  Once in the radiation chamber, Dr McCord and other specialists meticulously placed radiation, delivered in pellets, for the exact amount of time depending on where the catheters were placed.  Places with higher concentrations of cancer obviously the radiation stayed longer and the places with less...less time.  Once the procedure was completed, catheters containing radiation were removed, and we waited for Gregg's legs to wake up.  With the radiation, of course, comes complications; rectal fissures, bladder damage, seminal nerve damage, etc.  Of course, benefits outweigh risks, which is why we chose this therapy.  From one of the many books we read, "an erect penis does a dead man no good." 

In our 1st meeting with Dr McCord, he explained the different sources of radiation which are cesium, iridium, iodine, phosphorus, and palladium.  This is where my brain began to get fuzzy and I don't know which one he used or why.  He told us, I just can't remember.  He had our trust, did it matter anymore?


Hope those pictures get you skin crawling like they do mine!  As if it could be worse, Gregg had to undergo a colon cleansing the night before same as what is done prior to a colonoscopy.  Poor fellow!  Constant diarrhea and rectal pain from his daily radiation (IMRT) were already his norm.  He remembered back to November when he had prepped for a colonoscopy.  He thought that was bad then...

Oh my! 

And... he had to do it all over again February 15. 

In the days following, he was better than he expected, but he still needed to heal.  Yes, the area was sore, bruised, swollen, even turned black for a few weeks.  Ice packs became his best buddies.  Thankfully, we had plenty!

But now, it's over and done.  And once again, he hardly complained.  He really is my hero. 

Just don't get between him and the bathroom!

Wednesday, February 1, 2012

What do John Kerry, Pat Robertson, and Gregg Spence have in common?

Prostate cancer, of course!

I've read each of their biographies concerning prostate cancer.  Many of the following men had a 1st degree relative to die from the disease like John Kerry's father and Pat Robertson's brother.  As in the treatment of other cancer, improvements are always being made in the effectiveness of the treatments and decreasing side effects. 

So today, I wanted to give you a glimpse of men you may know who have beat PCa, or are living with PCa, or have died from PCa.  Get the word out!  Early detection is the key to survival.  PCa provided Bob Dole a new venture in becoming pretty famous with his viagra commercials. 


 Arnold Palmer
 Senator Chris Dodd
 Senator Bob Dole
 Rev Pat Robertson
 Mayor Rudy Giuliani
 Senator John Kerry
 Poet Robert Frost
 Earl Woods
 Frank Zappa
 Bill Bixby
 Louis Ferrakhan

 Terry Savales
 Robert DeNiro
 Sec of State Colin Powell
 General Normal Schwarzkopf
 Nelson Mandela
 James Brown
 Merv Griffin
Harry Belafonte
Dennis Hopper

Dee Bowen,
my super crazy, phenomenal, full of love and life, uncle!

and Gregg,
He's my rock
 and he's the man who rocks my world!

Have you had your PSA checked this year???



Digging Deep and Reaching High

Friday, January 27, 2012

Real Men Have Tattoos!

Just do it!

As I stated in the previous post, he got his shots.  The beginning of ADT, androgen deprivation therapy.  Woohoo!  We were told the side effects and also told that he would have 'mild irritation' at the injection site.  Now, what I call mild irritation is what I feel the day after a flu shot, a little tender but no biggie.  Moderate irritation would be my arm the day after a tetanus shot.  Here is his belly the day after firmagon.


Obviously, he couldn't stand anything to touch it.  It was hot, swollen and so tight.  I promise you this is not belly fat!  He didn't wear a t-shirt because he couldn't stand the rub of the fabric.  Not exactly what I would call a "mild irritation" at the site.  It took about 2 weeks for things to get better.  Now, he has 2 hard lumps in his belly, not painful at all.  He refers to them as his ovaries

His hot flashes are coming now as predicted. 

If only we could coordinate our flashes together...

Radiation started on January 12th.  He was fitted with a spongy thing that holds his legs in the same position everyday.

Oh Gregg and his crackberry...


They did this by positioning him and placing the mold, while picturing his prostate with a CT scanner.  The CT guy invited me to sit with him as he performed the adjustments. 

I saw it.  I saw the tumor.  I clarified, just to make sure, CT guy nodded. 

Gregg lies still under the machine counting ceiling tiles.

After calculations were complete and the position was secured, it was time for tattoos.  Appropriately, Gregg wore his Harley shirt today, not realizing he would be getting his 1st tattoos.  CT guy, who is a Harley guy himself, had a good time with that.  We laughed, thinking back at Phoebe on "Friends" who had the whole world tattooed on her shoulder.


Radiation is better with chocolate covered strawberries,
thanks Linsey!


In Bible Study Fellowship yesterday, the teaching leader started us off with this statement, "Cancer is to the body like sin is to the world.  Creeps in a little at a time and then it takes something radical to get rid of it."  Oh, so true.  Radiation is definitely radical!


Digging deep and reaching high!

Wednesday, January 25, 2012

That Others May Know

My main reason for continuing to tell our story is so that others will know.  

Change thinking ways... change doing ways.  Breast cancer is so well promoted.  There is probably not one woman alive who hasn't heard about a mammogram.  Breast cancer seems to have permeated most families, lending to further our education on the disease. Pink ribbons are on everything from bumpers to butter. 

and women talk...  They share their stories and their tears.  They wrap arms, cook casseroles and say prayers.  Men don't.  They go into their caves in an attempt to bear the burden alone.  I've watched women fight this disease with more strength than I ever knew they had.  It hurt to see such pain but in the end I stood proud of what they accomplished. 

While they might have had a cheering audience, the trek, they walked that alone. 

I'm proud of Gregg that he is willing to share the deeply, personal and shameful aspects of his disease.  Believe me when I tell you.  He does NOT participate in pity parties and doesn't want anyone's sympathy.  We've both been shocked at the ugliness of prostate cancer.  The extreme radical treatment and the physical and psychological pain that comes with it.  His sole purpose...

Just so others may know.

Many believe the two cancers, prostate and breast, are related, from the same gene.

Both scary.

Both cutting away at your core.

I'm glad screening tests are relatively easy for BrCa and PCa.  Have you or your loved one had your yearly screening?  Yearly mammograms after 40.  Yearly PSA after 45.  These ages change if you have a 1st degree relative with either of these cancers. Developing these tests took years of research, but neither of them prevent cancer.  They are early detection sirens.  THAT'S NOT ENOUGH!

How about stopping it before it happens?  Eradicating cancer.  Like polio!  Hopefully, we'll see this in our lifetimes.  For now, do what you can.  Eat right and exercise, get yearly screenings and donate to the American Cancer Society. 

Prostate cancer blue ribbon





Statistics


Breast Cancer                                                                 Prostate Cancer
1 in 8 women will get BrCa this year                              1 in 6 men will be diagnosed this year
230,480 women will be diagnosed in the USA               240,890 men will be diagnosed in the USA
39,520 will die from BrCa                                               33,720 men will die this year.
Most commonly diagnosed cancer among women          Most commonly diagnosed cancer among men
2nd deadliest cancer among women,                              2nd deadliest cancer among men

Lung cancer takes the lead in both sexes


I hope you learned something.  Hug a man today and ask him about his most recent PSA!



Digging deep and reaching high!


Tuesday, January 24, 2012

Doing the Next Thang

Our New Year started off great with our family here to celebrate with us.  Charles making his famous crabcakes and dill sauce.  I quickly answered the call from the top of my stairs in the early morning.  "Mimi! I want pancakes and syrup!!  PEEEZ"  and can that child eat some pancakes!  We had a great time and Gregg enjoyed torturing the guys with the pictures of his coming procedures.  Leslie declared of those procedures, "Taint my cup of tea!"  and all the puns begin.  Our team was formed!


Notice ,Kati Beth wants to fight like a pirate.  She's saying "Arrrrggh!"

Could Gregg be any prouder?


Our mailbox full of pamphlets and everywhere we turn, we see cancer.  The unnoticed billboards that we've driven by a thousand times, advertise cancer treatments.  Every news report has at least one mention of cancer that we now hear in bold."  Noticing all the pregnant bellies when I was pregnant was wonderful.  This...not so much.

 
Knowledge is powerful, sometimes overwhelming and I'm still learning when to close the laptop.

Treatment options for PCa are:
1.  watchful waiting
2.  prostatectomy (robotic or through the abd)
3. radiation
     a.. permanent seeds Brachytherapy
     b.  temporary seeds HRP
     c.  daily IMRT
4.  Androgen Deprivation therapy


Dr Banks and Dr McCord both told us that watchful waiting is not an option for treatment for Gregg because it would surely lead to death.

1. watchful waiting

Dr Banks, the surgeon who has performed this surgery around 1500 times says he would not be able to get all the cancer because he would not be able to see it all.  Just going on statistics alone Gregg probably has other organ involvement. Bone and Ct scans are negative at this point but they reminded us, even at high levels these lifesavers only see tumors, not cells.

2.  prostatectomy

Dr McCord, the radiation-oncologist, steps in and shows us (for 2 hours) options for radiation.  I don't know if he normally does this or not but he copied several journal articles and gave them to me.  (Remember, I came with a briefcase full of questions, pamphlets, highlighters and pens)  No stone left unturned, no question left unanswered.

3.  IMRT and HRT radiation would be our plan.

Side effects would be bladder irritation, severe burning with urination, fatigue, diarrhea, smaller risk of damage to lower bowel and rectum including fissures or strictures but this would most likely kill the cancer=cure US.

It's Dr Banks turn again and he begins the talk on "hormone therapy".  and our talk became eerie like wolves crying in the night.

This therapy is rightfully known as androgen deprivation therapy.  Meaning it kills hormones dead!  PCa's meal of choice is testosterone.  T is needed for the Ca cells to survive and thrive and divide.  Testosterone has to be eliminated.  The process of this also eliminates estrogen.  Yes, men have estrogen too.  It gives them feelings, like compassion, nurturing and loving someone else.  We all know what testosterone's job is.  But physically, these hormones also work together balancing cardiac health and bone health and a million other physiological processes.  Doesn't that remind you of a marriage both balancing and holding each other up?  Oh to get a glimpse of the mind of our Creator God.

With the combination or IMRT and HRT and ADT Gregg has a 80% chance of survical!  We'll take it!

Side effects of ADT:  hot flashes, weight gain, forgetfulness, weakness, decreased in bone density, moody, and impotence.  Dr Banks said, "now you'll know what menopause feels like!

Gregg signed the informed consent agreeing to be "medically castrated".  Huge lumps form in my throat. Seeing it in print.  For the 1st time, I feel a little anger.  My dander's all puffed.

This cancer keeps cutting deeper and deeper. Is that the goal of cancer?

I then hear the voice of Beth Moore saying, "do the thang, you just do the thang, girlfriend". 

I also hear Elisabeth Elliott, in her elderly, velvet voice, "when you're feeling overwhelmed, dear one, do the next thing...just keep moving". 

Or remembering the note from my dear friend, Sandy,

 "In pastures green?
Not always. 
Sometimes He who knows best
 in kindness
 leads me in weary ways:
where shadows be. 
So whether on hilltops high
 fair I dwell
 or in the sunless valleys
 where the shadows lie. 
What matter?
He is there."

Cancer starved=cancer dead=Gregg alive!  We'll take it! We'll do the thang!

Gregg's serious response to all of this,  "Doc, how will this affect my driving?" 

Face. long. waiting.

Doc assures, "Son, your driving should be fine." 

Gregg "not if you're making me into a woman!"

 and we laughed!

He got those 2 crazy, awful, horrendous shots of Firmagon in his belly. (Really, whoever named that drug had a sick sense of humor)   Wincing he said, "that hurt like hell!"  Garage door opens and welcomes us home.  He took one look at me and then started clapping his hands and saying, "Let's watch HGTV!" 

and we laughed...



Our Sunday morning worship song

I know that I can make it
I know that I can stand
No matter what may come my way
My life is in your hands


Public service announcement:

1 in 6 men will be diagnosed with prostate cancer this year.  (1 in 5 african american men)
30,000 men will die from PCa this year.
It is the number 1 cancer of men
2nd leading cancer caused death in men.
screening involves yearly blood test starting at the age of 40
Ask the men in your life what their PSA is.  They should know it!


Digging deep, reaching high!

Sunday, January 22, 2012

PSA's, Gleason Scores and Other Things We Didn't Know



So much to tell and it's just plain hard to start.  The things I'm about to share are deeply personal and not very pretty.  I'm sharing because Gregg asked me.  He wants his story known, so others can benefit.  Try not to be judgmental if at times my sense of humor seems odd or my faith seems weak or I have a little pity party.  Lastly, this is our story.  I'm not speaking for others fighting cancer, just us. 

The 1st week of December, Gregg had a physical.  Thinking it was a good time to meet our new doctor and nurse practitioner and get his prescriptions from his Milwaukee docs refilled.  He had some microscopic blood in his urine so his NP wanted to get a PSA (prostate specific antigen).  He always has blood in his urine, because he's had kidney stones forever (or so it seems).  We weren't worried at all.  He gets a call a couple of days later to let him know his PSA was elevated to 5.2.  If you're like me, you'd have to look that up on the internet.  Yes, it was elevated but not that much and I also read that having sex 24 hours prior to this test can give a falsely high result.  ok...guilty.  Again, very reassured and really didn't even think about it anymore.  The NP encouraged Gregg to see a urologist and he thought it a good idea because of his history of kidney stones and to check out this PSA.

Dr Banks, the urologist, talked with Gregg and was concerned with the PSA.  He wanted to repeat the test but he also wanted to do a prostate biopsy.  This PSA was 4.6.  Barely elevated!  Gregg went ahead with the biopsy anyway.  At the office, they refer to this as the "torture chamber".  The PA that did this was compassionate, funny and thorough.  He informed Gregg that he had done about 1000 of these. 

Here's the procedure...A prostate biopsy uses transrectal ultrasound imaging to guide several small needles through the rectum wall into areas of the prostate where abnormalities are detected. The needles remove a tiny amount of tissue. Usually, 12 biopsies are taken to test various areas of the prostate. The tissue samples are then analyzed in a laboratory by a pathologist.  

No anesthesia...none. 

Gregg said it was more painful than anything he could imagine.  He came home with bloody urine and bloody BM's for about a week.  He was not happy!

On December 15th, Dr Banks called and told Gregg, while he was on his way home, that he did have cancer and wanted to see him the next week to talk about treatment options.  We swallowed hard but proceeded.  Again, I go to the internet seeking trustworthy information and once again, I'm relieved.  Clark Howard, an Atlanta talk show host, has prostate cancer and he's not doing anything.  His is so new, so slow growing, he has decided for watchful waiting. Gregg has no symptoms, no family history, slightly elevated PSA, this is where we would be.  FOR SURE

We called our daughters and told them, reassured them, and answered their questions the best we knew how.  We had Kati Beth that week, so there was no time for lots of pondering or even talking.  She kept us happy and focused...on her.  We went into NC the following weekend and had Christmas with our family.  We were upbeat and yes, a little worried. 

December 21st, we met with Dr Banks.  He gave us the reports, laid out charts, drew us pictures.  Gregg was told he had 10 of 12 cores positive for cancer.  His Gleason score was 8 on a scale of 2-10.  Not what we were expecting.  We were told this was a very aggressive form and needed immediate treatment.  He informed us of options but told us we needed to see an oncologist the following week for a real plan of care. 

This was Wednesday.  Thursday morning I was calling and scheduling appts with Atlanta Oncology.  Wow, my head was spinning.  Before they would see us they wanted CT scans and bone scans, which means insurance authorizations and all that nonsense.

We were scheduled to meet with Dr McCord, December 29th.  It was the longest week of our life.  We researched more than I thought humanly possible.  We developed our questions.  We were in full attack mode.  Our daughters shared their research and their questions and we copied and pasted those onto ours.  I didn't know how they were doing.  They were quiet, which was scary.  As the mom, I need to take care of everyone.  If they're hurting, I need to be there.  This particular week, I could only think about Gregg.







We're ready to fight!

Come back in a couple of days for the rest of the story, as Paul Harvey would say.


We sang this song in church a few weeks ago.  It's become my motto for now.


I Am Determined

by Jennifer LaMountain


I Am Determined 
Darkness around me, sorrow surrounds me; 
Though there be trials, still I can sing. 
For I have this treasure – my God reigns within me, 
And I am determined to live for the King. 

CHORUS:
I am determined to be invincible 
‘Til He has finished His purpose in me. 
And nothing shall shake me 
For He’ll never forsake me 
And I am determined to live for the King. 

Hell’s gates are trembling from our prayers ascending 
Darkness is crumbling from praises we sing. 
Our Sovereign, Victorious is marching before us, 
And we are determined to live for the King. 

CHORUS

When I am weary – I’ll look to His face; 
And when I am tempted, 
I’ll trust in His grace --- 
Yes, I’ll trust in His grace ----- 

CHORUS:
I am determined to be invincible 
‘Til He has finished His purpose in me. 
And nothing shall shake me 
For He’ll never forsake me 
And I am determined – 
I am determined --- 
I am determined to live for My King.
 
  

Friday, October 21, 2011

Good thing We Aren't All Altos

I don't know when I started singing alto.  I just always have. 

Growing up in church, I can't possibly remember when I first heard it but as soon as I did, I was hooked.  Loved the harmony, loved the echo in those old hymns and loved resolutions.  Still do!

I'm so thankful for Frances Holliday and Dolly Nicholson as they were some of the first altos I ever heard.




My choir director started integrating Christmas music in our practice just prior to Labor Day.  The program will be fantastic and we have several very challenging songs.  We memorize all the music and words.  I'm getting palpitations just thinking about this! 

Last week, CD's were passed out for our learning "pleasure".  I love the music, so I was thrilled to pop this in my CD player and sing the whole way home from church. 



Let's just say it wasn't exactly what I expected.

Susan, our lead alto in our 125 person choir, sings all the songs in her lovely alto voice, while playing the alto notes on the piano.  Again, she has a velvetty, smooth and pure alto voice...

but all this beautiful accompaniment playing very quietly in the background and all I here is alto. 

While, this may be exactly what I need, because those alto notes are difficult to find in some of our pieces...


just maybe not what I want to hear riding down the road.

Alto is only pretty when paired with sopranos and tenors and basses.  It's the harmony and blending and balancing that makes it so beautiful for a duet to a full choir.

Holding your corner,
doing your thing,
completing your task. 

Doesn't this cover everything about the world we live in.  From our occupations, our ministries, even to our marriages.  Working together benefits all. 

As the Church, we are called to be the hands and feet of Christ, the body of Christ.  Each part doing something a little different, yet completely essential.  Working in harmony...for Him. 

"May it be a sweet, sweet sound in Your ear."

Rendering a complete work. 
       Being the Church. 
                 Not because He needs us but because we need Him.


Colossians 3:23-24
  "Whatever you do, work at it with all your heart, as working for the Lord,
 not for men, since you know that you will receive an inheritance from the Lord as a reward.
 It is the Lord Christ you are serving."

Your part is essential, alongside all the other parts. 

Zephaniah 3:17

"The LORD your God is with you,
 he is mighty to save.
 He will take great delight in you,
 he will quiet you with his love,
 he will rejoice over you with singing."

Ever wondered about Him singing? 

               He's singing over you today

                    ...listen.


Digging deep and reaching high