I got lucky

I heard from the new patient coordinator at Duke this morning at 8:40am.  I have a noon appointment with the oncologist, Dr. Zhang tomorrow (8/4/2015).  Obviously I am pleased as punch that I was able to get in so quickly.  I also spoke to my urologist this morning, Dr. Huang, so my records at Triangle Urology will be sent over to the Cancer Center so that Dr. Zhang can review.

Forward movement...that's what it's all about right now.

Thank you for the outpouring of well wishes, prayers and voices of support.

Peace-

Jeff

Prostatic Adenocarcinoma

And the beat goes on.  I was up until 2am researching…well sort of.  Basically I was reading and getting more and more anxious about the decisions I need to make.  However, I did finally make a request of my urologist to refer me to an oncologist at the Duke Cancer Center to at least get more information on alternatives other than surgery (that was at 1:30am).   Not that I’ve made a decision to pursue another option, but I do want to make sure I have explored all information I can get before the decision is made.  Of course, I’m sure I won’t hear anything from my urologist until the first of the week with regard to this, and even then it will probably be days, if not a couple of weeks before I could get in to see the oncologist.  Even so, it’s forward progress, at least in my mind.

At my appointment last Thursday, we went ahead and made a 3 month appointment for another PSA, DRE and possible ultrasound (automatically in the “active surveillance” mode), so any information I can ascertain prior to that would be a plus.  That isn’t to say that between now and then I won’t make the decision to go ahead and have the surgery, which is a real possibility.  I’ve talked to family and friends about the information I got from my urologist and the prevailing opinion is that I go ahead and have the surgery.  The thought of the surgery isn’t pleasant, however it’s not the actual surgery that has me hesitating, it’s the after effects of the surgery that give me pause.  Am I rambling?  I think I am.

Anywho, I am going to be in a holding pattern until I hear back from my urologist or Duke.  Maybe I’ll get lucky and this will be done quickly (because we all know I am a really lucky person….please note the tone of extreme sarcasm in that).  I’m scared, I’m anxious, I’m nervous, I’m spending way too much time in my own head!

Thank you for the outpouring of notes of concern, optimism, prayers and support.  It means so much and is very helpful knowing so many people are “in my corner”.

Peace-

Jeff

10:37am P.S. - and just like that, after maybe "overstepping" what is proper protocol, I will be hearing from a patient coordinator at Duke the first of the week.  Sometimes it pays to know someone there who is an awesome, awesome doctor and person!  Thank you Yousuf.

... and the answer is....

Yeppers.....it's positive, prostate cancer, Prostatic adenocarcinoma.  However, it appears to be early.  There are several "ratings" of the veracity of my cancer and so here they are:

Gleason grade: 6 (3+3)  That puts me at the "low risk" side of the scale.
TNM staging system: B1
Prostate Cancer Stage Groupings: T2, N0 M0, G2
Stage: II

Options:
Watchful Waiting- Monitored with periodic (3 mos) PSA & DRE, X-rays
Active Surveillance-Periodic PSA, DRE's but definitive therapy is instituted when pre-defined changes occur.
Surgery- Radical Prostatectomy (3 methods of same surgery: Retropubic, perineal or laparoscopic)
Brachytherapy (Interstitial seed placement) - percutaneous placement of radioactive seeds in the prostate
Cryotherapy- Liquid nitrogen or argon gas administered through probes in prostate
HIFU- High intensity focused ultrasound
Radiation therapy - usually used as a palliative treatment for pain caused by bone metastases.

The only "real" options to consider right now however are watchful waiting, active surveillance, surgery, or radiation.

And I have to make this decision.  We all know how good I am at making bad decisions!!!!
So those are the facts folks.

Prostate Biopsy (ies)

Ok.  It's been a few days since I had the biopsy.  First off, let me stop referring to it in the singular.  There were actually 12 biopsies taken.  Yep, 12.  Now, I didn't go into it with the thought that there would be ONE sample taken, however I didn't really think about that there would be separate samples taken.  I of course had Googled prostate biopsy and read about it and the whole experience was pretty much what I had read online.  However, reality is not the same as reading.  Without going into too many details, lets just say that between the 6 shots that preceded the biopsies and then the 12 samples that were taken, the whole experience was not pleasant.

However, I do have to say that Dr. Huang was very considerate and wonderful during the whole procedure.  He talked to me, constantly inquired about how I was doing and did everything he could to minimize the pain and trauma of the whole thing.   Thursday night was though one of the most painful nights I have ever spent. ....and Friday was not picnic either!  I even took a pillow with me to work...not that it helped much.  More psychological assistance than anything else.

Results will not be in until sometime this week.  What the steps are once we get the pathology results,  that remains to be seen.  Positive: surgery and/or oncology.  Negative: We didn't even discuss that.

Waiting...waiting...waiting...and we all know I am not a patient person!

ABR results in

At least today I got some good news...or at least I think it's good news.  The ENT called with the ABR results and they were normal.  So at least with the first test there is no indication of a brain tumor.  Not sure if the ENT will now want to have a brain MRI or what.  At least this test says nothing growing, but of course that doesn't stop the pain.  So even though I got a "normal", I'm still no closer to feeling better.

Another added negative this week: I haven't been able to take anything for pain, not even my allergy meds because I can't have any NSAIDS to reduce the bleeding risk heading into the biopsy tomorrow.  If I can just make it to 5pm tomorrow, hopefully the biopsy will be done and I can come home and chew on a whole bottle of Tylenol!

One down.

1 test down, just biopsy to go

I had the ABR (Auditory Brainstem Response) test on Monday.  However I won't know the results for several days.  The description that the ENT gave me when she told me about the test wasn't exactly accurate.  There were a few factors that she didn't tell me about.  1- the fact that these tiny ear buds would be crammed into my ears with a thunderous clicking sound that would drone on for 20 minutes.  2- the relax in a recliner actually was sit uncomfortably in an exam chair.  With my height, those things never fit right, especially the head rest which usually just comes up to the base of my skull.  3- she never mentioned that during the entire test I have to remain stone still.  But I made it through and now I wait.

The biopsy is Thursday afternoon.  I have to admit that I'm not sure if I'm more nervous or just freaked out.  Hard to tell the difference at this point.  I thought I had been handling all this quite well except for the whole lack of sleep thing until Sunday afternoon.  I let my emotions get a little out of control while watching a silly TV show where a character died.  Funny how something inconsequential can set you off. So I cried for a little while.  A little for me, a little for Joe, a little for Aimee.  Sort of spread it around some.

I find all this so strange.  In the weeks & months following Joe's death, I thought about what I would do if I were to get sick.  I was grieving so much, I wasn't sure that I would even want to seek treatment.  However, when you get sick and you're hurting, it's a different story.  I never really thought about the aspect of possibly hurting.  Sick, not hurting, no real ailments...maybe no treatment is an option and just pass along quietly.  However, sick and hurting...you want treatment.  Or at the very least, REALLY good pain meds!!  So I'll wait and see what the ENT recommends and I'll wait and see what the Urologist recommends.  But those that know me, know I am not a patient person and I most definitely am not a patient patient.

Pray for me.

2 For 1 Special?

Wow, it has been so long since I have posted anything on here.  I guess that is a comment on what has been going on with my life as of late.  Or at the very least, a comment on what has been going on with my life that I wanted to talk about.  I suppose however, it is time for me to start talking.  If for no other reason than to just get the crap running around in my head a chance to breathe.  My last post was a parting note about Relay for Life 2015.  That was May 30^th, now it’s July 7^th.  I didn’t check but I don’t think I’ve gone that long without a post since this site began in the fall of 2010.  Back then it was filled with updates on how Joe was doing, how I was doing, how it all “was going”.  We all know how that chapter ended and now I guess it is time to start a new one.  Sadly, the blog title can remain the same but with a twist.  However, nothing is “written in stone” yet, but I’m preparing psychologically.   I’ve had lingering gastrointestinal issues for the last 2 years and I figured if anything was really going on with me, that would be where the problem would lay.  But no, things had to get really interesting.  So here is where this 2 part story begins.

January 2015-  Tinnitus:  Somewhere in mid-January I started having severe ringing in my  right ear.  I spoke to my doctor and he suggested a decongestant nasal spray, which I took but to no effect.  For months I just “dealt” with it.  When I went to have my annual physical in early June, I mentioned it again, he again examined my ears, saw nothing and suggested that I see an ENT.  So being the good patient that I am (yeah, right), I called and made an appointment.  Went to the ENT, had a full exam including hearing test.  Result, I have a significant loss of hearing in my right ear, but still no apparent reason for the ringing and by that time, I was also having pain/pressure in my right ear.  The doctor put me on a course of prednisone for 10 days to see if that might reduce any inflammation that might be going on in my head and also recommended I have an ABR (Auditory Brainstem Response) test.  This test evaluates the electrical pathways from the brain to the ear measured with electrodes.  Reason for test, to see if there is possibly something growing on my brain that should not be there causing the pressure/pain/ringing.  Fun right?  I love it when the doctor says “brain tumor”.  The ABR is set for July 13^th.

Also at the same annual physical, I had my regular PSA and prostate exam. (too much info?)  My history with the PSA has been a rocky one with my first abnormal number back in June 2013.  We followed up with a 6 month re-evlauation and I got a lower number that time.  Since then, my PSA number has steadily increased and this year, it was well over the acceptable limit and my doctor referred me to a urologist.  Today, I had my appointment with the urologist.  Another PSA, another prostrate exam.  However, the urologist indicated that during the physical exam there was a definite hardening/mass on the right side of the prostate.  So then we had the prostate cancer talk, followed by the biopsy talk, followed by the MRI talk, followed by the decision to go ahead and schedule the biopsy.  So that is scheduled for next Thursday, July 16^th.  He clearly outlined what the procedure is like, what I can expect, and what my options are.  Of course I Googled it immediately upon getting to work afterwards.  While it by no means sounds like a jolly good time, it doesn’t sound terrible either.  20 minutes of discomfort, 5 minutes of a little pain, and then it is over.  Of course, I’ll probably feel differently about it the closer it gets.

So there you have it.  2 different areas of my body, 2 different possibilities of something there that isn’t supposed to be.  What are the odds?  I suppose in this day and time, the odds are probably very good, but still.  So I wonder if the Duke Cancer Center has a 2 for 1 special?

RFL 2015

$2574.63

One Week and Counting

Can it really just be a little more than a week until Relay for Life?  How did time go by so quickly?  I’m within reach of my goal, but just not quite there yet and still need your help.  If a donation is not feasible, please consider coming out and walking a few laps.  The event is from 6:30pm on May 29th until 8:00am on Saturday May 30th at Leesville Road High School, Raleigh NC.  We walk, we talk, we laugh, we play games.  We also cry and remember.  

The luminaria ceremony is at 10 p.m.  The lights will be turned out, the luminaries will be lit and we walk a lap in silence, remembering and honoring those that are no longer with us.  If you have lost someone, consider purchasing a luminary for $10 and having their name put on it.  If you tell me whose name you put on it, I will look for it, take a photo and send to you.  At the end of the night, if you would like to have the bag with your loved ones name on it, I will be happy to pick it up and bring it to you later.

Relay for Life funds research.  Research produces new effective treatments.  Given time for more research, advancements in treatment can happen.  But that time costs money.  Money that is raised through Relay for Life.   Study it, treat it, beat it.  Please help me help others that are hoping, praying and waiting for viable new treatment options.

Please use the link below to make a donation online using a credit card, or use the same link to print a check submission form and mail along with your check.  Remember to make the check payable to the American Cancer Society.  All donations are 100% tax deductible.  All donations are needed.

“We walk all night because cancer never sleeps”

Thank you for your consideration and support.

Jeff

DONATE TO RELAY FOR LIFE

2 1/2 WEEKS TO RELAY FOR LIFE

Just 2 1/2 weeks from now is my Relay For Life event.  Eeeeeek!  I am SO behind!!!!!!   HELP!!!  But I have faith, and friends and it can happen. 

As I’ve said in the past, my reasons for participating are well documented and I don’t think anyone wants to hear the rundown again.  The short version, cancer.  Regardless of what kind, can be devastating to individuals and families.  Ask someone if they ever had a family member or close friend who had been treated for cancer.  100% of them would say yes.  For me, it was both my partner and my mother.  Both died of cancer.   I’m just one of millions.

Relay for Life funds research.  Research produces new effective treatments.  Given time for more research, the advancements in treatment can happen.  But that time costs money.  Money that is raised through Relay for Life.   Study it, treat it, beat it.  Please help me help others that are hoping, praying and waiting for viable new treatment options.

From 6:30 pm on Friday May 29th until 8 am on Saturday May 30th, I will be at Raleigh Relay for Life on the football field at Leesville Road High school, walking.  Help me by making a donation.   If that is not feasible, come out and walk a few laps.  The atmosphere is one of Hope.  It is both uplifting and sobering.  The link to donate online is below my name.  If you would prefer to write a check, use the same link to print a donation sheet and mail in with your check.  Please remember to make your check payable to The American Cancer Society. 100% of your donation is tax deductible.

“I walk all night because cancer never sleeps” 

Thank you.

Jeff

 

LINK TO DONATE TO RELAY FOR LIFE

RELAY FOR LIFE 2015

Ok folks.  And now it really begins.  Just 3 1/2 weeks from now is my Relay For Life event.  In years past, I have been much farther along with my fundraising efforts.  But in years past, I haven’t had the turmoil that this April brought.  April was a tough month in my family, but it is time for me to put my focus back on Relay and see it through to the event on May 29-30th.

My reasons for participating are well documented and I don’t think anyone wants to hear the rundown again.  I will however do the full story if someone so chooses to listen.  The short version, cancer.  Regardless of what kind, is a scourge on humankind.  If you asked every person you came into contact with, if they ever had a family member or close friend who had been treated for cancer, I would almost guarantee that 100% of them would say yes.  For me, it was my partner and my mother.  Both died of cancer.  For me, it’s 3 friends, 2 who successfully battled the disease and have won, one who did not.  I’m not unique.  I’m just one of millions.

In Joe’s case, after diagnosis, he was in treatment for 2 1/2 years before pancreatic cancer took his life.  However, for that particular cancer, 2 1/2 years is extraordinary.  How did he beat the odds for so long? Because research has produced treatments that are more effective.  His oncology team was the best that Duke offered.  But even they could not perform a miracle.  But given time for more research, the advancements in treatment can happen.  But that time costs money.  Money that is raised through Relay for Life goes toward the necessary research to advance treatment.  Study it, treat it, beat it.  

Each of us most likely has personal stories where cancer has touched our lives.   Please help me help others that are hoping, praying and waiting for viable new treatment options.

From 6:30 pm on Friday May 29th until 8 am on Saturday May 30th, I will be at Raleigh Relay for Life on the football field at Leesville Road High school, walking.  Help me by making a donation.   If that is not feasible, come out and walk a few laps.  The atmosphere is one of Hope.  It is both uplifting and sobering.  The link to donate online is below my name.  If you would prefer to write a check, use the same link to print a donation sheet and mail in with your check.  Please remember to make your check payable to The American Cancer Society. 100% of your donation is tax deductible.

“I walk all night because cancer never sleeps” 

Thank you.

Jeff

RELAY FOR LIFE DONATION