A Celebration Of Life

As I recently celebrated another birthday, I’ve contemplated a lot on what the day actually meant to me. This is because I was celebrating more than just the day of my birth. I was also celebrating the one year anniversary of my prostatectomy procedure and the fact that my dear wife made me go get a physical, which led to my #prostatecancer diagnosis. I celebrated not only my birth but also my wife’s commitment to #insicknessandhealth. Her commitment to “woness.”

This month is also #prostatecancerawarenessmonth, which reminds me that I am now part of a brotherhood of men who fight and have fought this highly treatable yet terrible disease.

Yes, this birthday was like no other. It was definitely a celebration of life in more ways than one. Probably my most important birthday!

Prostate Surgery and Beyond

In my last post, I had mentioned that after considering our options, we decided that surgery was the best choice for us. We researched and read in order to prepare ourselves for the big day. Sure, we both had some deep concerns regarding what the pathology report would read and what the next steps would be. But we prayed and left all those anxieties and worries at the foot of the cross.

On a partly cloudy day on September 20th, as sat as a family in the waiting room, I almost forgot why we were at the hospital. However, I was quickly reminded when my name was called and a nice lady applied a bracelet to my wrist. Things were starting to get more real. But I was ready! I was also hungry… I mean, I’m a breakfast man so… I’m just saying… When my name was called again, it was for real. It was time for me to take the long road to the pre operative area.

I was given a gown to change into. The anesthesiologist then came to the room. He was a rather quiet, stoic man. He asked me if I needed anything, to which I responded, “how about two shots of Jack Daniels?” Unimpressed by my response, he said, “well, we’ve got some medications that…blah blah.” “Could you just humor me,” I thought to myself. But the anesthesiologist went about his business. The nurse who was completing my pre-op papers kind of chucked at the exchange. Much to my surprise, I got a visit from my pastor and one of our elders who said a quick prayer and wished me well.

After an IV was started in my arm, I was wheeled to the cold operating room. The only thing I remember was seeing a large piece of equipment in the center of the room. This was the robotic machine used for the prostatectomy. After that, all I remember was waking up in the recovery room with a catheter. I was then transferred to a hospital room where I stayed two nights.

It was nice to come home to my own bed. I’m not the greatest of patients but the recovery was not too bad. I had a lot of help and mother-in-law even came down, and she was great!

Fast forward to eight months after surgery and I’m doing great! My latest PSA was still undetectable and I’m officially cancer free. I will still have my three month checks for two years. I continue to thank God for the medical team that treated me, for all the prayers and support from friends and of course for my family. I especially thank my one, my only, my forever partner, my love, mon cherie, my ride or die. My wife of 23 years has a been my rock, my unwavering support, my nurse and my best friend! I couldn’t have gotten this far without her.

I can officially say that I’m a survivor!

Staying Close During Social Distancing

People who know us well, know that I’m an extrovert and my wife is an introvert. I require longer periods of socializing whereas my dear wife, contrary to popular belief, does like social interaction, but has to have it in spurts and needs time to decompress after long periods of socializing.
So how do we, as polar opposites on the socializing scale, make our marriage work during this time of quarantine? This also applies to couples who don’t normally spend a great part of their day together. I offer a few suggestions:

Love our walks together!
  1. Respect Each Other’s Differences

Respecting one another’s differences is important at any time but when you’re in lockdown mode it’s extremely important. I have to be aware of not “suffocating” my spouse and she in turn connects with me after she’s had her alone times. 

  1. Be Willing To Communicate 

In times of a quarantine when social interaction is limited, it’s important not to isolate yourselves further.  It’s vitally important for us to communicate with one another if we need hugs, space, kisses or conversation.   

  1. Be Attentive To Your Spouse

No matter how much “alone time” a person enjoys, we all need some amount of socializing. When this is not possible, feelings of isolation, anxiety and fear can squeeze like a vice grip.  So it’s up to each spouse to be attentive to each other’s needs.

  1. Be Patient With Each Other 

Being around each other more can feel like your spouse is in front of you every turn you take.  This can feel a little like deja vu.  It’s important to be patient with one another and try to somehow have fun with these situations.

  1. Say I Love You

The most important way to survive a time of social distancing is to tell each other “I love you” often. These three words can never be said enough and are the foundation to Twobecomingwon!

What are other ways for a marriage to survive an increased time together?

HOPE SPRINGS AGAIN

For those who have followed our journey, I apologize for the long hiatus. So now, I bring my story current and to a close. 

Although I was troubled, dazed and confused, I was able to get composed again through prayer and the support of my wife and family.  Sometimes there’s a fine line between hope and despair.

I first listed my options: No treatment, radiation and surgery.  Because prostate cancer is a slow growing cancer, I thought I could roll the dice and take my chances.  How many years would this buy me?  No way of telling.  However, I was already at an intermediate risk stage.  How long would it take to reach the high risk?  No way to tell.  Maybe a year.  Maybe 10 years.  What then?  Then I’d be facing the other two alternatives.

Well after all the consultations, prayers for guidance and research, we decided on robotic prostatectomy, as our option.  An option that I had written off initially.  In terms of life expectancy, both surgery and radiation were in the 90% range.  These treatments were also characterized by low recurrence rates.  In addition to research, I also had the opportunity to speak to two men who had undergone this procedure and were doing well.

Although minimally invasive, a robotic surgery is still major surgery and requires at least six weeks rest from major activity or physically demanding work.  For us, this was the best option in terms of removing cancer, preventing recurrence and was also less disruptive to schedules.  

So I underwent robotic surgery 15 weeks ago and although I only took 10 days off from work, I did have a good bit of energy loss and fatigue from the stress of surgery.  However, I’m back to full activities as of 7 weeks post surgery.  I continue to thank God for so many texts or social media messages from friends, my church family and especially my wife and family for their love and support!  

This has been a long and unexpected journey for us.  A journey that has changed my perspective on life and definitely deepened our “woness.”  

ANOTHER ROLLER COASTER RIDE

I have been quite for a while as I recover. But I wanted to continue my story…

As we met with the oncologist, he thoroughly described my staging and reviewed the NCCN Guidelines.  According to the Gleason score and high percentage volume involvement, of at least two specimens, my prostate cancer staging, according to the American Joint Committee on Cancer was the following:  

pT2b or PT2c with most likely no node involvement (NO). 

If this sounds confusing, it’s really not as long as you have a legend to follow.  For reference, you can follow the attached diagram.  But just as a quick explanation, the “p” along with the “T” refer to the pathologic staging of the primary tumor and how much of the organ is involved.  This is designated with the prefix pT2-4 referring to the extent of the prostate gland involvement (minimal, one lobe, two lobes, whole organ and surrounding tissues). 

The other letters refer to lymph nodes and distant metastasis, N and M, respectively. The N is staged from X-1, ranging from no lymph node sampling to node metastasis. The M is staged from 0-1C, indicating no metastasis to bone involvement.

As we heard about the staging, we felt some optimism.  But then the doctor described percent success rates with and without androgen deprivation therapy. Wait, what?  I had already decided on a course of treatment that I wanted. What was happening?  Furthermore, I was now told that I would first have the radioactive pellets placed in the prostate and then four weeks later I’d have the external beam treatment.  

We were also told about the precautions I would need to take with having the pellets in terms of holding babies.  Mind you, I have a baby grandson (nine months old during this occurrence).  When he told us that the pellets never stop giving off radiation, I was paralyzed.  Although I had read that the pellets would not be a danger in terms of holding a baby, the radiation oncologist said that holding the baby on my lap for a long period would not be advisable for three to six months.  To say I was shocked would be an understatement!

Then came the other bomb.  We were told that because of the enlarged size of my prostate, it would be highly recommended that I have ADT first to decrease the size to allow for safer placement of the pellets.  Now I became numb.  How did I go from having a choice on the ADT to now it almost being required?  Not only that, the percent survival at later years were also improved when adding this therapy.  As with any treatment, there were several possible listed side effects from radiation and ADT. 

My world was absolutely rocked!  I felt like someone had pulled the carpet from underneath me!  What I thought was an appointment to go over the treatment protocol and start scheduling sessions, became a bombardment of information that was overwhelming and surprising! However, given the intermediate, unfavorable category of my prostate cancer, made sense.  It was just unexpected.

Well, the other option, which I had totally ruled out before this visit was surgery. However, we were told that obviously, we would have to make that decision.  And obviously, there were also some side effects discussed with the surgery.  We were told that although no medical professional could force me in any certain direction, given my age, surgery could be a viable option.  I left this appointment with totally dejected.  Needless to say, it was a very long night!

To be continued…

CONFUSION ABOUNDED

So we thought we were ready to embark on the radiation pathway. Yep, I thought a one time procedure of pellet implantation was very desirable over 40 external beam treatments. This would be much less disruptive to my schedule.

Furthermore, I had a conversation with at least two people who either had external beam or pellets with external beam. But before I committed to any type of treatment, I was still confused about what I had heard at one of my urologist appointments regarding my Gleason 7 score. This was confusing to me. But after doing some research, it seems that even if most of the core specimens are 3+3 and only one is staged at 3+4=7, the person is staged according to the higher number.

So the Gleason system is based on the assumption that the higher number is representative of what’s actually occurring. Here I am thinking that sine most of the core biopsies were a Gleason 6, that’s what was representative of the cancer. Oops, I guess NOT!

Oh well. I had to stay on track. I had to keep moving forward. So next stop on this train was an appointment with the oncologist at the cancer center. I was ready. My wife and I had discussed this and made up our minds on the treatment plan and was ready to go and get this radiation thing scheduled and started. But I could not have been less prepared for what came next.

Continued….

THE RECONNAISSANCE MISSION

After having heard about my treatment options, I was determined to speak to someone who had been through radiation. However, my quest was more specific than just anyone. I was on a mission to hear from someone around my own age who had been through radiation treatment.

So through a friend, I was able to speak to a gentleman who had a history a higher Gleason score and went through both brachytherapy and external beam treatment. And he was doing well with minor side effects. So after this conversation I was encouraged and ready to go forward. So I thought.

After this conversation, my wife and I met a couple who were nutritional vendors promoting a vegan lifestyle. The gentleman had a significant history of prostate cancer, however, his had metastasized. He underwent both surgery, testosterone suppression therapy and radiation. He shared research information about how a diet free of animal products and low in saturated fats, was known to protect against prostate cancer and actually reverse the process.

The name that stuck out the most during our conversation was Dr. Dean Ornish. He authored a study in the Journal of Urology, which detailed the effects of an “intensive lifestyle change” on men with early, low grade prostate cancer. The study showed that the PSA revealed a 4% decrease on the experimental group versus a 6% increase in the control group. Furthermore, there was an decrease in the growth of cancer cells of up to 8 times as much in the control group.

This sounded groundbreaking! But was it truly real science? This may not be mainstream, I thought, but certainly worth some attention. Furthermore, Dr. Ornish may not be a cardiologist or nutritionist, but even the American Cancer Society recommends a reduction of saturated fats and reducing red meats.

Although this gentleman had some side effects, his claim was that they were improved with a vegan diet. Although I was not totally ready to bet the farm on these claims, it was clear that there were at least anecdotal evidence. So we did research on a vegan diet and decided to adopt this practice. I had nothing to lose. And my wife, in a demonstration of love and support, decided to adopt this lifestyle with me. (Mostly because she’d be doing the cooking anyway. LOL)

Our hope and prayer was that God would use this change in diet in conjunction with the upcoming radiation treatments to give me good outcomes. But wasn’t totally sure if this was my treatment option for sure. I still had a consult with the Cancer Center.

THE TREATMENT PLAN

Now that we are well versed on the Gleason system, I’ll continue my story.

So with all the pieces of the puzzle together, now came time to break out the National Comprehensive Cancer Guidelines (NCCN) to develop a treatment plan. The NCCN is a comprehensive set of guidelines developed through extensive review of clinical trials and existing treatment protocol along with expert medical judgment and recommendations by physician panels made up from Member Institutions. These guidelines cover 97 percent of all cancers affecting patients in the United States and are updated on a continual basis.

According to the NCCN flowchart, interventions or treatment protocols are based on age and life expectancy. This means that the younger the patient, the more aggressive the intervention. Conversely, the older the patient, the more conservative the approach. For example, a 75 year old male diagnosed with a Gleason 7 prostate cancer would more than likely undergo radiation rather than surgery.

Well, from what I remembered, my Gleason score was 6. According to the NCCN Guidelines, the recommendation was prostatectomy (removal of the prostate), brachytherapy (radioactive pellets placed into the prostate gland) or external beam radiation. And with the radiation, I would have to decide if I wanted to have androgen deprivation therapy (ADT), which are basically injections to decrease testosterone, which is known to promote prostate cancer growth.

So, again, my Gleason score was repeated as a 6. And now I had to decide on which type of radiation I wanted as treatment and if I wanted to go through with ADT. Well, nothing sounded extremely attractive about pellets being inserted into my prostate or ADT. So I decided against those and surgery and opted for external beam radiation, which I know from others who had it or were having it, that it was 40 treatments.

Of course, as with any discussion of a surgical procedure or medical treatment, came the discussion or “informed consent.” “Everyone is different and not everyone has these effects, but some of the side effects of radiation are urinary incontinence, blood in the urine, painful urination, diarrhea and erectile dysfunction. These are mostly temporary and medications can be given for erectile problems.” (Sorry, I have to keep it real). Just what I wanted to hear- feasible ways in which I could help keep the prescription drug industry viable! (insert sarcasm face). Well, this was starting to sound less attractive

I left that appointment determined to do more research in terms of pros and cons of radiation therapy. I knew I need to find people who had been through this type of treatment and glean from their experiences. To be continued…

As we continue to raise awareness for prostate cancer, please remember: Although there may not be a hard rule for screening, talk to your doctor about a PSA test if you’re between 45 and 55 years old. Screening should be done at 40-45 years of age for African Americans, Latinos or if there’s a strong family history.

THE GLEASON GRADING SYSTEM

Remember the numbers associated with my biopsy specimens? Let’s get back to those. During my phone conversation with the urologist before my vacation, I was told I had a “Gleason 6” staging. Or maybe I understood that in my mind. Remember this, it will be important later in the journey.

Normally the pathology report will list each specimen or “core” (named such because it’s a “core needle biopsy”) separately by a number assigned to it by the pathologist, with each core, having its own diagnosis. The cores are listed separately because If cancer is found, it’s often not in every core, so the each core has to be examined separately to accurately make a diagnosis.

Pathologists grade prostate cancers using numbers 3 or higher based on how much the cells in the specimens look like normal prostate tissue under the microscope. Grades 1 and 2 are not used. Instead, if the core sample present with cells that look normal, it is designated as “benign.” This is called the Gleason System. Most biopsy samples are grade 3 or higher.

Since prostate cancer specimens can often have areas with different grades, a grade is assigned to the two areas that make up most of the cancer. These two grades are then added together to give the Gleason Score. In this system the higher the number, the more likely the probability of spread and thus the higher stage the cancer. The highest a Gleason sum can be is 10. Recall that the numbers are designated as a sum: 3+3, 3+4 or 4+3. The first number assigned is the grade that is most common in the specimen. For example, if the Gleason score is written as 3+4=7, it means most of the tumor is grade 3 and less of it is grade 4, and they are added for a Gleason score of 7. This sum can also be designated as 4+3=7. Although this is the same Gleason score, most of the cancer is grade 4, which is obviously higher. If a tumor is all the same grade (for example, grade 3), then the Gleason score is reported as 3+3=6.

Although most often the Gleason score is based on the two areas that make up most of the specimen, when a core sample has either a lot of high-grade cancer or there are three different grades including high-grade cancer, a higher score is determined to reflect the aggressive nature of the cancer.

The other significant part of the pathology report, besides the Gleason score is the volume of each specimen. This basically refers to the percentage involvement that each specimen is affected by cancer. For instance, one of my specimens, the one graded at 3+4, had 50% volume. And one of the 3 + 3 specimens had 40% volume. These are consistent with a possible greater involvement of the prostate gland and a greater possibility of spread.

This certainly was a cause for concern. However, I already knew from the scans that there was no spread. Next stop: Treatment Plan.

As we continue to raise awareness for prostate cancer, please remember men: Although there may not be a hard rule for screening, talk to your doctor about a PSA test if you’re between 45 and 55 years old. Screening should be done at 40-45 years of age for African Americans, Latinos or if there’s a strong family history.

THE SCANS

So what’s it like to hear you have cancer right before a vacation? Well, let’s just say that it wasn’t in my bucket list.

After our vacation, came the follow up visit. As it had already been related to me, I would need some diagnostic studies to rule out any spread. Oh yeah, I guess this is a good time to say that I’m a doctor and I was very familiar with all these steps. Familiarity, however, didn’t add any level of comfort. It did however, allow me to cut out the middle man and schedule my own tests! In my sense of losing control I needed to feel like I still had some, even if it was in my own head.

As I laid motionless on the hard, cool table for the bone scans, I could see my images on the screen and immediately knew there was no spread. I guess my knowledge was helpful in this case. But I also knew that the next step involved a discussion of treatments. And I knew that I was facing radiation or surgery. However, I thought for a moment how someone in my shoes would feel if they didn’t have the medical knowledge that I did. Would they feel lost, out of control and helpless? I think they would. Because in a way, so did I.

I guess I also have to share at this point the fact that my darling bride of 23 years was with me during these visits. It was very reassuring to know that I had her support. I told her she didn’t have to go with me but in a very assertive way, with a not so nice look she said, “shut up!” That made me happy.

To be continued…