Part I: The Diagnosis
It was an otherwise ordinary day, a Thursday. Exactly one week prior to this day, my husband and I drove to this same medical center that we were sitting in again. The last time it was to get a prostate biopsy. Getting that procedure is worrisome enough and so easy to find anything, anything at all, to get out of going. The only reason you're there is you've been told by your doctor that something appears abnormal either from a PSA test or a digital exam and you need to get it checked out - now.
But today we were back at the medical center to get the results of the biopsy. A week had gone by, we were optimistic that the results would be negative. My husband's doctor said there was only a 30% chance that there would be anything wrong. That kept our hopes high for seven days, and I tried not to think about it during that week. However, my husband's father had prostate cancer - but at age 65. Having a family history only increases the likelihood that he would get it sometime in his life. But he's only 49, far too young to have it now.
We sat in the waiting room for about 15 minutes. The clock slowly ticked, it was a long 15 minutes. Then we were asked to go into one of the procedure rooms to wait for the doctor. Both of us were asked to be there. That can't be good if they ask both of you to be there, can it?
The longer we waited, the more my mind raced with what the doctor would say when he came in the room. I did a crossword puzzle to keep my mind focused. But why would they make us both come if the news was good? Finally, a knock at the door and a really nice, young doctor walked in. He was the same doctor who performed the biopsy, he has a great bedside manner. The sort of doctor you want if you're in this situation.
Without much chit chat, he got right down to business. I could feel my husband's posture as he sat next to me. But the words we did not want to hear came out of our doctor's mouth. "We have the results, the biopsy came back positive, you have prostate cancer". My husband's posture changed, it was as if the wind got knocked out of his sail, he was not expecting to hear this at all. But for some reason, I was prepared for the news. I just wanted to get the facts and understand what we have to do. I was in clinical mode.
For those of you unfamiliar with Prostate Cancer, it's one of those cancers that gets mentioned in the news when a famous actor or politician has it, but it does not have the same widespread campaign you see with breast cancer or heart disease. We've all seen those pink ribbons and red dresses for both of those. But who knows the color bracelet for prostate cancer? It's blue. Who knows how many men will get affected by prostate cancer at some point in their life? It's 1 out of 6. It is the most common cancer next to lung cancer for men. Someone you know has had it. Someone you know will get it.
In this case, that someone is my husband. We are now members of a club we never wanted to join. The Cancer Club.
Someone you know and possibly you, will be members of this club. The longer we live, the greater the chance of becoming members at some point in our lives. This is a lot sooner than either of us wanted. What's the line Woody Allen has? "I'd never join a club that would allow a person like me to become a member". Well, I'd rather never join this club at all.
After a good 30 minutes with our doctor (and I do say "our" doctor because I'm in this fight as much as my husband) we had the facts we needed to proceed. We knew his Gleason Score, his PSA number, the options we had to fight this battle. Now I could get down to what I do best, research.
We maintained our positive outlook, it is a highly "curable" cancer. Especially when detected early. We discussed our plan of action, and especially, when we should tell our three daughters. Our eldest daughter already knew the facts and that we were going in for the results of the biopsy. When we returned home, she was there. We told her right away. Fortunately, she's home for a few months before going to college in the fall. She'd be here to help me carry some of this heavy burden.
We also decided we'd tell our other two daughers when they came home from school. We opted to do so because we knew they'd detect a change in our behavior. We've become plugged into our laptops and cell phones all day doing research and talking to people, experts or survivors. Making plans and getting the best information we possibly can. Informing our strong network of friends who can help us get through this ordeal. It's not something you want to tackle alone.
About nine hours after the morning began I was sitting next to my husband, to his left just as we were seated at the doctor's. We were eating dinner with our children. Suddenly it felt as if the wind had been knocked out of him again. The news of the day finally hit, the clinical mode was fading and reality had sunk in. "I have cancer". For an athletic, health-conscious man, this was unbelievable. I had to maintain my posture both mentally and physically and emphasize all the positive energy and "good" news we heard. "Curable", "Treatable", "Detected Early".
But when night came, and after several hours sleeping, I woke up at 3:39 a.m. An overwhelming need to cry came over me that I could not stop. The news of the day had finally hit me too. The scariness of it all, the unexpected results. The word, "Cancer". I looked over, and my husband was sound asleep. I think the stress of the day took it's toll on him. I was glad he was able to sleep because he's going to need his energy in the next few months to be ready for whatever is next.
Part II: Who Do We Tell?
It's been five days since we learned my husband has Prostate Cancer. Over the weekend, we told my husband's family and our closest friends about our situation. There's a point at which you wonder if you should hold back and tell anyone at all, it is such a private ordeal. And yet you need your support system in place to help get you through the toughest parts of the experience.
My husband made the decision about who to tell, since he's the one going through this situation. I make sure to clear it with him before telling anyone else. He has chosen to take this opportunity to send a strong reminder to our friends to make appointments and get their check-ups scheduled, because it was in this manner that we discovered and detected he has cancer - early. The early screening and detection has meant the difference between getting this cancer out of him completely and "cured", versus discovering that it has spread and put him in a totally different category that could mean years of hospital visits, radiation and chemotherapy.
We've reached out to our friends and family and have asked them to let us know of their cancer stories, especially if anyone they know has had it.
Right away, a good friend in our neighborhood who is a breast cancer survivor reaches out to us. She put us in touch with her best friend who she's known since they were 10 or 11 years old. Her friend's husband had Prostate Cancer, also at a relatively young age. He was exactly who we needed to talk to.
We ended up getting in touch with his wife because he was out of town. His wife gave us both a good run down of what to expect and what I could expect as the "caregiver". She was especially informative about the wife's viewpoint of what to expect the next few months.
Next, we talk to our friends who have contacts or are in the medical field. It turns out my husband has a swimming buddy who is the medical director of anesthesiology at the surgical center that we are part of. He works directly with some of the surgeons and urologists and ends up giving us a some key information.
All of this shows the power of networking, and seeking out advice from the right people to help us on this journey.
In my own family, I have a brother who is neurologist, and he gives us some advice. Since he is not in this field of study, his information is more in terms of guidance, knowing what to ask and how to make informed decisions. Still extremely vital in the mode we're in.
In our process of informing our friends and family, we encourage them to schedule check ups, because if it weren't for my husband's annual check-up, we would not have discovered the cancer, and this early detection is what we hope ends up curing him of this cancer.
My advice: Be selective who you tell initially. Make a list of those family members and friends who can provide the most positive support to you during this time. It will make a world of difference. And limit the negative people because they can drag your attitude down. Limit who you tell at work, because work can be the distraction you need to get away from thinking about cancer all of the time. Just tell your immediate manager and those who need to know your daily whereabouts, because you will have a number of doctor visits and tests during the next weeks and months ahead. If you tell too many people at work before you know your course of action, it can be a disruption and cause more anxiety if that's all they want to talk about when they see you. So limit things at work to alleviate the disruption it might cause.
I'll end this entry with some of the best and most direct advice we got from a friend who is a five-year cancer survivor:
"GET RID OF FRIENDS YOU DON'T NEED: One good thing that came out of my cancer is I know who my friends are! The majority of my friends were great! A small percentage didn't know what to say and didn't contact me for about 1 year after it happened, I can understand that. Then there are the friends who need to be fired! I had one woman I know who I saw a kids birthday party I took my child to between the time I was diagnosed and the time I had my surgery. I was a wreck inside but trying to hold it together. She came up to me and said, "Oh well, we're all going to die anyway." I was aghast. Needless to say, I have not talked to her since. Some people get nervous and say the wrong thing. Others are just plain insensitive! It seemed everywhere I went, somebody had a story to share about someone they knew who died of breast cancer. NOT WHAT I NEEDED TO HEAR!! After a while, I kindly began asking them , "Please, what I need now are POSITIVE stories." and would walk away. You'll need to protect yourself and your loved one against people like this. You don't need people who bring your loved one down or fuel any uncertainties at this vulnerable time."
Part III: We Get Into Clinical Mode
Now that we've had a few days to fully absorb the news that my husband has Prostate Cancer, we push our emotions to the side for a moment to concentrate and enter "Clinical Mode". This is the limited time we have to do our research and be sure we are making the best and most informed decision on how to tackle the cancer.
As mentioned in the "Who Do We Tell" blog entry, we obtained lots of great information from friends and relatives who have been through this themselves or have contacts in the medical field who can advise us. The stories and support is inspiring and uplifting.
In addition to this level of important help, we also got on the internet, read books and pamplets. From my friend who is a cancer survivor, another golden nugget of advice:
"BE CAREFUL OF THE INTERNET: The internet is a great tool but use it with caution. Remember it's uncensored and anyone can write anything they want. I would stick to websites from the large, well-respected cancer centers like (Johns Hopkins, MD Anderson, UCLA, Stanford, UCSF, etc.) then ask your doctor if you have additional questions."
Clinical Mode give us the semblance of control over the Cancer Monster. It's the only thing we have to gain the upper hand. As long as the cancer stays in this early stage we are "fortunate" to be in, we feel empowered with the information we uncover that guides us on how to battle this and become a member of the survivor club. It helps us block the horrible emotions that this cancer can overtake our lives and become the only thing we think about.
Clinical Mode can be overwhelming. We don't want to only think and talk about Cancer to our friends and family. We have to resume our normal daily activities, not only for ourselves, but for our children. Life goes on. Cancer becomes an unwelcome visitor, and we have to live and manuever around it just like you would a guest who overstays their welcome. The 800 pound Gorilla in the room. Sometimes you have to ignore it for your own sanity. The Gorilla will always be there, so just go on with daily chores, work, and living - it can help you get through this more than you know.
Part IV: The Upside of Cancer
Is it possible that there is an upside to something as scary and horrible as Cancer? Believe it or not, there is. One of our friends who is going through a different form of cancer put it so eloquently. He put it this way: "The many gifts in life are illuminated when battling Cancer".
There is more than one thing that comes out of all of this that is positive. Here's our own personal list of things that so far have been incredibly positive and have filled our hearts with the will to beat this:
- Our children are our biggest source of happiness during this difficult time. They make us laugh and remember why we're partners in this thing called LIFE. They don't dwell on the negative, they only seem to see the positive. They are a true source of positive energy.
- The love, concern and caring from our family and friends has been overwhelming. We realize who our most sincere friends are, who will go the distance with us. We know we will also go the full distance for them in their time of need.
- We stop to smell the roses. This interruption has given us time to reset our priorities and take stock of what's really important to us. On a day-to-day basis, priorities get blanketed by the things that make up the fabric of our lives, including jobs, school, chores, obligations, and finances. The true purpose of our lives gets buried underneath all of this so often. But when a disease, illness or injury suddenly comes crashing down, it quickly uncovers the daily things and reveals or makes you rediscover what's truly important in this life. Suddenly, it's as if life is in slow motion, and we pause to take stock in why we're here.
- You really understand the meaning of "living to work, or working to live."
- For me, personally, I really got to put my vows to practice. The one about "for better or worse, for richer for poorer, in sickness and in health..." This whole experience has been humbling and in an unpredictable way, joyful for me to show my husband how much I love him. In our daily lives before this happened, the intensity of life was a bit relaxed. When something like Cancer strikes, you have a chance to put your mettle into high gear and join the Cancer army and, "be all that you can be."
Part V: The Importance of a Second Opinion
In the days and weeks since learning of my husband's Prostate Cancer diagnosis we made countless phone calls and had a number of conversations with people whom we could trust. Those both lead us to two doctors in our area who are well known experts in treating Prostate Cancer. We were fortunate to get face-to-face appointments with these doctors.
We met with the next doctor on our list to get another opinion. We'd been told that this particular doctor does not have the best bedside manner and is rather brash. But despite that, every single person who had their surgery done by him would have him perform the same procedure if given the option. His brashness was second to his expertise. My husband comments that brashness is good, all experts have that air of confidence.
When we reached the private practice office, we entered a large waiting room which included mostly older men, but also a few women. This is a urology department so all sorts of conditions apply here. In any case, after checking in, we waited just a few minutes before they called us in.
From the hallway, a nice man acknowledged me as I waited for my husband to come in. It turned out this gentleman was the doctor we came to see. Compared with what I was prepared for, expecting a terrible bedside manner, he turned out to be completely approachable and talked patiently with us at great length answering all our questions about what to expect with the da Vinci assisted robotics. This doctor is a medical "stud", having performed thousands of surgeries with this method. What we learned is "open surgery", the traditional method where the surgeon goes in with his own two hands and uses a scalpel, is slowly on the wane. Robotic surgery is the wave of the future, it is less invasive, results in less blood loss, leaves fewer scars, and has a quicker recovery time. Before we know it, it may even be done remotely!
There are a few key aspects which play heavily into the decision we will ultimately make: My husband's age and the cancer severity (meaning Gleason score and Staging). These two determine how much time we have to work with.
While we're talking to Dr. G., it dawns on me that a second opinion is also about feeling comfortable with the person we're choosing to perform an extremely delicate, life-saving procedure on my husband. We can't afford to feel ambivalent about who we go with. We learn that there's a change in the medical field, with how operations like this are performed.
We also realize how important it is to understand that it is the obligation and job of the patient to do their research. They can simply follow the advice of their initial doctor, or get a second, third or however many opinions they need to make the right decision for them. It can be a difficult process because it is work. For nearly two months we are doing nothing but research and talking to various doctors. It is that critical. I'm exhausted and need to think of something else. But this is something we won't get a second chance with, we have to do it right the first time.
Later in the day, we meet with yet one more doctor, our third opinion. It's a like a match game, "Who's the Right Doctor for You?"
My husband has always been one to do a ton of research before making a decision. You can imagine what it felt like waiting for him to put that diamond ring on my finger. But once he does make a decision, a huge weight (or in my case, a huge wait) is lifted from his shoulders. When it comes to his health, such as when he decided he was going to get lasik surgery, he investigate it thoroughly. He talked to multiple friends and colleagues to find out where they got their procedure done. He talked to experts, read books, reviewed websites, listed the results and then listed the pros and cons. The good thing about all the research he does is it makes it easier for friends and family to know what to do if they are going to get the same procedure done. They use his research and benefit from it. When I got my lasik 4 years after my husband, I just went to the same doctor and the procedure was done flawlessly. Best decision he made for me : )
Now, however, this decision was life altering. Not only would this doctor be removing the prostate, and hopefully all of the cancer, but other bodily functions could potentially be affected permanently. The cancer is one thing, but having basic bodily functions affected for the rest of your life is another. Getting the cancer out is our main concern.
To make light of this serious issue, my husband and I call the Prostate his "Castle" (we get this term from a good friend of ours who we're in touch with over the course of the diagnosis and treatment). The crown jewels are stored there. But it is time to get the "Castle" removed to save his life, and we just hope the drawbridge works after all is said and done.
Addendum:
Prostate Cancer Decision Aide Link - The most common choices a man has after being diagnosed with prostate cancer are the following:
- Watchful Waiting - meaning you can try to change you diet, lifestyle and see if that improves the condition. However, if you have a more agressive form, you may not be able to consider this option.
- Radiation and/or chemotherapy. This can involve radiation seeds which are implanted into the prostate and slowly kill the cancer (as well as good cells).
- Hormone Therapy - If you lower the level of male hormones in the body, it can reduce the size of the cancer in the prostate.
- Radical Prostatectomy - complete removal of the prostate either through traditional open surgery or through the da Vinci assisted robotic surgery.
Part VI: Our "Last" Second Opinion
Our last weekend before the surgery, we had one last "second opinion" with a world reknown doctor up in San Francisco. We'd read and heard plenty about him and knew several people who were treated by him to enormous success and praise. So we were extremely interested in meeting him and getting this one, last opinion from an expert. We woke up at 4:45 A.M, quickly showered, hopped in our van and were the first to greet our neighborhood Peet's Coffee baristas for some java to wake up our day. It was a nice, crisp, clear March morning. It would take us an hour to get to the city to meet this doctor.
We had three appointments in the city. First, with Dr. C., who would review my husband's case. Secondly, with an expert who would perform a high resolution ultrasound to provide greater clarity and detail to the cancer. And lastly, with an oncology physician who wanted to determine if my husband would be a candidate in a clinical trial for a prostate cancer vaccine. It was going to be a long day.
We got up to the city in record time - at that "before the birds wake-up" hour there are not as many commuters on the road. We arrived at the univeristy hospital and were the first ones in the waiting room, before the receptionist arrived. Slowly, other patients entered the room, some as far away as Korea (that's how well known this doctor is). The receptionist arrived, not at all phased that the waiting room was full before she got there.
At our annointed hour, the nurse called us in and directed us to an examination room. The doctor entered within moments of taking our seats. For such a well known doctor, he was extremely down-to-earth and immediately started reviewing my husband's records. He confirmed most of what we already knew, including his Gleason score, grading, biopsy cores, etc. He helped move our next few appointments so we would not have to wait so long between meetings. This doctor was extremely, incredibly efficient. You could tell he lived and breathed his job. He's a flawless doctor instilling complete confidence and trust in his ability and track record.
Within a few hours, we already had the results of the ultrasound. The new scan showed us some areas of concern. The doctor told us there was a 30% chance the cancer had spread outside the margins of the prostate. That put extreme pressure on my husband and me to make a decision quickly - we could not wait much longer. We had already taken up 8 weeks to do such thorough research since we were told his cancer was slow growing. But our time was not infinite, it was time to make a decision.
For my husband, this was an arduous decision. Most importantly, we had to get the cancer out. That was number one. But after that, what creeps into every man's mind is their manhood. Like a woman who has breast cancer - the removal of her breasts takes away her feminity and womanliness. If chemotherapy is involved, that often takes her hair away. For a man, removal of their prostate can mean incontinence and permanent Erectile Dysfunction (ED). Just ten years ago, that was the norm - incontinence and ED. So waiting gave my husband more time to wrap his mind to this possibility. For sure, getting the cancer out was the most important thing. But the other possible outcome was disheartening.
I hesitated giving him my thoughts on this as I knew he had to make this decision himself and live with the outcome. But I finally gave him my opinion when we heard the cancer may have left the capsule, or "castle" as we called it. After meeting this world reknown doctor, my husband wanted to wait 2 more months and have Dr. C perform the prostatectomy. My intuition told me it wasn't just because of his expertise as much as the further time delay it would buy my husband. He wasn't ready to face the worse outcome after the prostatectomy.
We had a radical prostatectomy appointment already scheduled with another doctor in five days. This doctor, (Dr. Gholami, who has given me permission to use his name), is just as much, if not more, of an expert than Dr. C. Dr. Gholami has performed nearly a thousand radical prostatectomies, not to mention hundreds of other operations using the da Vinci robotic surgical system.
It came down to a friend of my husband's (who happened to be a former Harvard medical student) who finally talked sense into my husband and urged him to proceed with our surgery date with Dr. Gholami. Ultimately, it was the best decision we made for this situation.
So we committed to the surgery date. We filled our last weekend with some fun activities to stay distracted. On Monday, my husband and I had our "last supper" as we call it because you have to fast for 24 hours before surgery. My husband was not looking forward to that. So we went to a nice winery before dinner and did some wine tasting, then headed to an Italian restaurant for dinner since we figured pasta-carbo loading like you do before a big race would fill him up and store the calories he would need for this major surgery. It was a good choice.
Tuesday came, and together we took a long walks and just hung out together, each getting mentally and emotionally ready for tomorrow, "our" surgery day.
Part VII: The Surgery
The "Big Day" arrived, appropriately with gloomy March weather in the background. My husband was scheduled for early morning da Vinci robotic surgery lead by reknown surgeon, Dr. Gholami. Dr. Gholami has a long list of impressive credentials, which greatly influenced our decision. We also made this decision based on my husband's age, his current overall health, and speed of recovery compared to open surgery. The nerve sparing aspect was key to both of us, as there is almost 99% continence soon after surgery. And, in keeping with my analogy in previous entries comparing the prostate to his "castle", we wanted to be sure his drawbridge was functioning. The nerve sparing was key to this and da Vinci robotic surgery would give us the best possible outcome.
We were to arrive at the hospital at 5:15 in the morning for Pre-Op. So we tried to go to sleep earlier than usual the night before. My husband was nervous, but able to sleep fairly well despite an empty stomach. I, on the other hand, did not sleep well. My thoughts and feelings were mixed. Foremost on my mind was to get rid of the cancer. But I have to admit, even though we read and researched all we could about the da Vinci method, I was worried about his recovery and any post-surgery after-affects (which I'll get into in my next article).
NOTE: All scheduled surgery patients have to fast for 24 hours and ensure their intestines are emtpy because of the anesthesia and surgical procedure.
The morning of the surgery, we awoke at 4:30 am, showered and headed for the hospital. But just before we left, our three daughters tumbled out of bed on their own to give their Dad a big hug. We planned in advance to have them stay home from school and be able to see him right after the surgery. It was important for our family to do this and have that emotional connection.
I should mention that two days prior, we did a trial run to the hospital to ensure we knew which entrance of the hospital to come in. It turned out it was a smart thing to do because the hospital has three entrances. We were told in our instructions to head to the emergency room, but when we got there they told us to go to the main entrance. When we got to that entrance, they told us to head to the out patient entrance. Who would have thought that that is where we were supposed to be? But at that early hour, that was the only entrance that had any staff to admit surgery patients.
Immediately upon entering, we were very impressed with how efficient the staff was. My husband was admitted right away, then a series of personnel took down data, took his vitals (blood pressure, heart rate, stuff like that), got his IV ready, and he was given immodest hospital garb. All his jewelry had to be removed, which consisted of just his watch and wedding ring. His clothes were handed to me and I put everything in a hospital issued plastic bag with his name on it.
Each time a new person came to see him, they verified his name, date of birth and procedure he was there for. They either washed their hands or used sanitizer, to me a good sign of a well run hospital. They each took their time to answer about anything he had questions on and were warm and friendly.
I was allowed to be with him even up to the operating floor. The "driver" of my husband's gurney had me walk by his side as we took the elevator ride up and was wheeled to the operating floor. I could stay there as the operating nurses and surgical assistant introduced themselves to him. Then the anesthesiologist came and introduced himself to my husband. He was extremely warm and had a great bedside manner, giving an air of confidence and assurance. It made both of us relaxed.
Then it was time - I had to kiss my husband one last time before they wheeled him to the OR. I had to hold back tears as we both would not know the full outcome until after the pathology report in seven days. I also did not know how the surgery would go, if they would discover anything surprising or unusual.
I was given the option to stay in the hospital waiting room, or go back home where I could rest up. Since I'd elected to stay that night with my husband at the hospital I chose to wait at home and rest. While at home, I was anxiously expecting a call from the nurse or doctor who was supposed to call, but after 4 hours at home with the girls, I called the hospital to see if there was any news and discovered he was already out of the operating room, out of the recovery area and being moved to his own room. It was time to head over and see him.
First, we stopped by a store because the girls wanted to bring him some "Get Well" balloons. We quickly chose some funny balloons to cheer him up, and within minutes we were at his bedside. We were very fortunate, he had his own room - no roomie! He seemed OK, but I found out he had just finished bantering with one of the nurses. The anesthesia was still wearing off and he felt like he needed to get up to go to the bathroom and was demanding to go pee. But he had a catheter. That told me he was out of it, the affects of the anesthesia. He was also hoarse, his speech was dry and rough. But he was joking with the girls right away. After 30 minutes or so, he was ready tired and needed to rest. He had pain killers and other drips going in his system that made him weary. I drove the girls home, got a few things and returned to the hospital room within an hour.
We later learned that during surgery his torso was filled with Carbon Dioxide in order to expand his cavity. This is fairly routine for surgery in your gut area, it makes it easier for the surgeon to get a better view of the area being operated on. One of the side affects of this is it causes pain up through the shoulder area as it gets released over the next week. That was a surprise to us, we had not been told that initially.
Surgery Outcome: In total, Dr. Gholami made six dime-diameter size slits over my husband's torso. You can see the graphics on the da Vinci site. The sixth slit which may not be shown on the video is to release any bodily fluids during and after surgery. The slits all have specific purposes, either to insert surgical instruments from the da Vinci robot, or to remove fluids, gases, insert the catheter, remove the prostate, etc. It is a very well-mapped procedure. In total, the operation took about 2.5 to 3 hours. During the surgery, Dr. Gholami is aided by a top notch surgical assistant, his seasoned anesthesiologist, and two surgical nurses. They are a well-oiled team, they have worked together for years and this makes the operation hum and proceed as smoothly as possible. This is key to any successful surgery. The initial news was positive, Dr. Gholami called me to tell me the good news, that upon intial examination, it appeared they spared 95% of his nerves and that all of the cancer was contained in the castle. We'd know for sure in about a week when his full pathology report would be complete.
Meanwhile, in Post-Op, the floor nurses were also key to his recovery. If I may say so myself, it was comforting for my husband to have me in the room so he would not have to keep buzzing the nurses for every little thing. I could keep an eye on him and anticipate what he might want. His need to shift just a little because he was so uncomfortable. I'd find someone to help me and we'd shift his weight so it wasn't all on his bony bottom. He also had these support hose and mechanical socks that would help his leg circulation to prevent clotting. I'd have to adjust those every now and then.
He was definitely thirsty, but the staff did not want him to drink right away until his intestines were fully "awake". Otherwise that would lead to great discomfort and nausea. He was so thirsty though, I thought I was helping by asking for ice chips. But sure enough, even those few ice chips we gave made him vomit and that made him feel like his gut was tearing with his fresh surgical wounds. So we refrained from anything but a few sips of water every hour. He was now on 36 hours without food. Definitely hard for my husband. It would be 48 hours before he could even hold down a small bowl of rice porridge.
About 2 hours after I was there, I finally got to see the results of his surgery. It looked like he'd been in a knife battle, with punctures over his abdominal area. Sutures and tape covered those areas up but I could see where he was incised. There was slight bruising on both sides of his torso which would get more prominent in a few days. And I could see how uncomfortable he was with the catheter.
All through that night I got very little rest. He moaned and groaned the entire night, he was in such pain. And every 2 hours a nurse would come in to take his vitals, check his IV and administer more pain killers and antibiotics. The plan was to have him out of the hospital within 24 hours. I could not believe at that point in time that that would happen. That he'd be in and out so quickly. But the next morning, after a breakfast of consume' and tea, we got word that he'd be discharged by noon. The surgical assistant would be there to check his stats, review his charts and go over in-home recovery. She was a wonderful surgical assistant and the first thing she said when she came in the room was, "you have to thank your internist, he saved your life." She was referring to the fact that if it weren't for such an alert internist, the early detection of this cancer meant the difference between getting all of the cancer out now, at this early stage, versus having it spread beyond the castle and into another organ or part of his body that could potentially be terminal. Early detection and a top-notch surgeon saved his life.
That wedding ring had better be there for at least another 50 years.
Part VIII: The Recovery and the New Prognosis
Exactly six weeks ago my husband underwent a radical 'prostatectomy'. It was performed by Dr. Gholami, a world renown surgeon adept at using the da Vinci robotics. Six weeks ago, my husband and I were optimistic about the outcome, yet fearful of the recovery and the post-surgical affects. We spent many hours talking to experts as well as recovering patients and heard more 'war' stories about the post-affects of a prostatectomy. While the goal of a prostatectomy is to get all of the cancer out, it wasn't without some potential life altering side-affects. Including permanent incontinence and "ED", the dreaded erectile dysfunction.
So you might ask, "Why did you choose to have a prostatectomy over any other form of treatment that would not have such adverse side affects?". There are several factors which played into our decision, including my husband's age (50), his overall health (excellent), and prospect of getting all of the cancer out (high). If he were ten to fifteen or more years older, like the majority of prostate cancer patients tend to be, we might have considered an alternate method. But for someone relatively young and for the most part, healthy, we opted for the one method that could get the entire cancer out and that meant it had to be by taking the entire prostate out.
The majority of men who get prostate cancer tend to be well over 65 years of age. Their overall health is often below par. In those cases, a radical prostatectomy, complete removal of the prostate, is not an option because the surgery itself would be detrimental to their health. Hormone therapy, radiation or chemotherapy are better options. But once you chose these other options, you often cannot elect to have a prostatectomy later because the gland has become weakened and/or the body just cannot take any further form of treatment without taxing it adversely.
By choosing a radical prostatectomy, my husband's chance of being cancer free was extremely high. His Gleason score was low, and from the various tests he had, it did not look as though the cancer had spread beyond the "castle". So, getting the cancer out was our priority.
We made our choice, and we had to live with it. For better or worse, for richer or poorer, in sickness and in health - my vows were coming into play big time.
The first three weeks back home were very rough. It seemed too soon, but exactly 24-hours after his surgery, he was wheeled out of the hospital to our awaiting van, and then to a big welcome home by our three daughters. For him to walk ten steps was a struggle and his face and body showed his pain, he was hunched over, walking like an old, 90-year old man. Three days before, this is a man who ran, swam and biked routinely and had a standing pulse of 45. But now his torso was covered with stitches, bruises and bandages and he had the medical contraption all men fear - the dreaded catheter! During this time, he dropped 15 pounds. It is a common side-affect from surgery to loose your appetite. Your intestines take a while to wake-up and function properly. Those first weeks his appetite was light, and he was so weak he had to take naps during the day to regain his strength. I became his full-time nurse for awhile. I'd never seen him in such a weakened and pained state before. It was heartbreaking.
We continued to have pangs of worry about how successful his surgery was, we still did not know how he would recover physically. We did get the tremendous news, however, exactly a week after the surgery the pathology report came back and showed the entire cancer was removed, he was cancer free. That was our goal, and that was our hope. Chalk one in the "WIN" column. But what of the rest of our hopes?
Our next worry was about the continence and "ED". Many of the men we talked to who had this exact type of surgery were still experiencing incontinence and ED. And this is over 2 years after their surgery. We knew that could potentially be his outcome too. We were hoping six months, at best, to regain his strength and bodily functions.
This Post-Surgery story could go on if it weren't for an astonishing breakthrough. While it was liberating to have the catheter removed at the beginning of week three, what has been incredible is we are at a mere six weeks post surgery and my husband is no longer "depend"-ent, if you get my drift. And you may recall my previous blog analogies to the "Castle". So this is a bit embarrassing, but for men going through this, you may be interested to know that the "drawbridge" is working. "Houston, we have lift off". We are totally astounded that all systems appear to have the "green" light and our hopes and plans for the future can pick up where we left off. Perhaps with more gratitude than ever before and appreciation for our time here with each other. We have a new sense of appreciation for our amazing friends who saw us through this very rough time - who planned and brought us meals, who called and visited and sent us their prayers. We will never forget this time. We will never forget these friendships and acts of kindness.
Our new prognosis has put us in the "Cancer-Free" category. My husband will still have to have quarterly check ups to ensure the cancer is completely gone. He will have to do this for a few years. But we are living like we're cancer-free, and ironically, it's like that song - "Live Like You're Dying", because you want to get every last precious drop that life has to offer.
It has made us reflect deliberately and made us realize that the slow lane is sometimes the best lane to be in - you remember to stop and smell the roses and take in all that life has to offer.
Part IX: What's Next?
We are entering the third month since my husband's radical prostatectomy. At about Week Four post-surgery we started seeing huge leaps in improvement to his energy level. A month after the surgery, he was able to work a full day, but by the time he got home he was exhausted. At Week Six he was still down about eleven pounds from his optimal weight and that extra weight was necessary for keeping his energy level high. At this point, he's only five pounds less than his pre-surgery weight, and he may try to keep this level as he's feeling great.
Seven weeks after the surgery, he ran a 10K in the Big Basin Redwoods which has a very hilly terrain. He told me he would not push himself, that he would even walk if he felt unable to complete it by running. It turns out he felt great during the entire run and even garnered a gold medal, coming in first in his age group, and eleventh overall out of 80. We're astonished at how well his recovery has been. We contribute this to his age, his overall excellent health prior to the surgery and his regular workouts up until two days prior to the surgery. He also is tremendously optimistic by nature. That optimism could be one of the most important characteristics to any one's recovery.
We recognize that of any form of cancer one could agonizingly be diagnosed with, Prostate Cancer tends to be a slow moving one. It's not as life threatening as lung or pancreatic cancer. When detected early it has a high cure rate and many treatment options. We know people with other forms of cancer and their prognosis and experience dealing with it have been vastly different than ours.
Our lives have resumed close to "normal". Meaning, the girls are all back to their routine going to school or work, and my husband has gone back to his job and traveling. His first business trip after the surgery was a little worrisome for me, he'd be gone from my sight, and back to late business dinners and so tired upon his return. But, being back to this routine made everyone realize how minor this cancer set back was to us. It was a momentary blip in the radar of our lives.
But something is different.
The realization that we cannot take our lives for granted. Not that we did before, but it is with a new level of urgency and awareness. It's brought a new passion to our marriage and our happiness level is through the roof. It's an experience we will never forget, a battle we fought together and triumphantly won. For now.
Even after 20 years of marriage, we know more about each other and how we both cope with cancer. Going through a health issue will either bring you closer or tear you apart. We have gone down that scary road together and there is comfort knowing we can do it again. That we're in this for life, until death us do part. So, from here, we enter a new stage in our lives together. We enter the cancer club as full members whether we like it or not. There is a knowingness to our lives, of what we are to each other. From here we know we can go the distance.
I don't know when I'll write next about this particular topic. My husband will have a four month check-up toward the end of June, so I'll write a brief post then to provide an update. Thank you to everyone who has given us their support and love through this emotional ride.
Important Resources:
Prostate Cancer Research Institute
American Cancer Society
da Vinci Prostatectomy
Dr. Gholami - our surgeon
Anonymous said...
i stumbled upon your blog earlier today and felt compelled to share my dads story (briefly) in hopes that this could possibly save just ONE MAN from doing what my dad did, when he was diagnosed a few years ago.
my dad was 55 and received his diagnosis that the cancer was at its very early stages and highly treatable. he just had to decide which treatment he preferred. im sure youve been given a number of choices but PLEASE-- if your hubby is even considering radioactive seed transplant, ask him to take a good hard look at what hes choosing before doing so.
being that the cancer was in its earliest stages, they first did a wait and see. of course, over time, though his PSA level wasnt high, the Dr could almost feel something with the digital exam so suggested my dad choose a treatment plan. removal of the prostate was a dumb choice to make because of all the horrible risks and outcome (cant pee, no sex, etc..) so my dad chose hormone and radiation therapy first. the doctor agreed that this was the best choice but, of course, didnt tell him that the next step, usually is followed by radioactive seed implant. this came as a surprise but my dad, of course, agreed to do whatever his cancer urologist told him to.
he had the surgery at the foremost cancer center in NYC (sloane -kettering by the BEST oncology urological surgeon there). we were very hopeful.
from the very start everything was a disaster. he had NEVER had a problem urinating before. now, he couldnt urinate and required a cathether. he eventually had to learn self-catheterization because, on and off for the last few years, there are times he needs to pee but cant. and heres the reason why...
the radiation from the radioactive seeds that were implanted into the prostate escaped, over time, and damaged/burned surrounding organs. his urethra became horribly scarred. the only way to allow urine thru the urethra became self catheterizing to widen the blockage, just a little, for urine to drip out. it takes him almost 10 minutes for the urine to flow out. he must do this everytime he feels the need to urinate. its a TRAGEDY!
whatever procedure you choose, you will have to sign all these releases that you wont hold the hospital responsible for ANYTHING that could go wrong. each procedure has its own warnings and releases, from anything to infection all the way through death. my dad signed the releases hoping that none of the problems would occur.
so hes now 66, cancer free, but cant urinate on his own. hes had a number of painful procedures to widen the urethra, but they all failed. he will be dependant on self catheterization for the rest of his life. hes unwilling to have a permanent catheter implanted into himself (they surgically do so through the stomach into the bladder) because of all the horror stories hes heard so this is now his lot. sex, of course, is no longer possible, and he cant urinate on his own. had he known this would happen to him, hed have opted for the prostate removal from the start since the results are the same (and maybe, just maybe, he wouldnt have had the bad effects that he got as a result of radioactive seeds)
my dad now belongs to a few groups (online and in person)to help him deal with this situation. alot of men are unwilling (theyre embarrassed) to admit they have these problems post prostate cancer treatment but many men who are in general honest about themselves will admit that theres a huge risk in whatever treatment plan you choose. you just have to hope for the best.
just wanted to share this with you
hugs, from 1 concerned female to another
lauren, 38 years old, NJ, mom of 4
April 8, 2010 11:16 AM
Parent Grapevine said...
Thank you for your post, I appreciate it. Sorry I cannot reply directly since you sent it anonymously, but I hope you read my comment. Yes, many choices are not fully explained, we learned that we had to be our health advocate because information is often slanted by the health provider. I've heard of new advancements your dad can benefit from, I hope he gets good support in his groups. Our best and thanks.
April 8, 2010 11:31 AM
DDK said...
Tina,
Our thoughts and prayers are with you and Doug and your girls. Let me know if there is anything I can do to help out.
April 9, 2010 10:07 PM
Karl F. said...
I was also diagnosed at an early age -42- and was blessed to stay in remission for 6 years. Unforunately, my cancer recurred last year. I opted for hormone therapy because my Doctor at Stanford in California, who I trusted implicitly, convinced me to try that first, followed by radiation and chemotherapy a couple of years later. I was lucky to remain cancer-free for 6 years but was unable to "perform in bed" and urination was always difficult and painful but I didnt care, I was alive. My wife was very understanding at first but we've since split (the big C can and will do a number on your marriage so be prepared. Make sure you take advantage of any Psychioatry Psychologists social workers programs at whatever center you have your procedure in.) I had stereotacic radiosurgery as a last ditch effort (even though thats one of the more painful routes to go)but that hasnt been successful for me. I'm hoping to be accepted for a clinical trial in the near future. My best to you and your husband on this journey. -Karl from Atherton, CA-
I was diagnosed with prostate cancer 10 years ago and went through all of the assessment, analysis and decision making. Just as you are doing, I kept notes along the way and later wrote "Prostate Cancer's Emotional Maze: Forging Your Way." I found this cathartic and it engaged me in learning all aspects of the disease -- and especially dealing with what goes on in your head every day.
ReplyDeleteI wish you well as you move through the education, analysis and assessment and would be glad to communicate about it if you wish.
Larry Eiler larry@eilerpr.com