Monday, August 9, 2010

The Waiting Game

It has now been almost 2 weeks since my final treatment and I'm feeling fantastic. Almost all of the urges and/or discomfort has subsided. I'm ready to live a normal life again.

But wait, not so fast. I may feel like I'm cancer free now, but we haven't yet confirmed this. Hold the celebration. On Sept 14th, I'll go back to my urologist and have a cystoscopy done. They will examine the inside of my bladder with a tiny camera and then make the determination. I fully expect to be given a clean bill of health at that point. The majority of people my age, with my condition, have success with the treatment. Hey, the odds are good! If I'm clean, I will then be subject to only periodic check-ups. The duration between checks will continue to increase the longer we go. Eventually, it will be done on an annual basis.

Being a cancer patient really has given a somewhat different outlook on life. I've learned not to sweat the little things, be a little more patient, and enjoy the life God has given me. Yes, I've even felt like I've become closer to God and learned how to pray. In the back of my mind, I'll always know that this disease could return at any time and life could be shorter than I expect. For now, I want to live the rest of my days as fully as possible.

Some of those feelings prompted me to quit my job at Quicksilver. Instead, I've decided to pursue a position as a school bus driver, which feels like a much more meaningful job. The old job was just too many hours, little reward and not enough pay. Not enough pay is still going to be a small issue as a bus driver, but I'll have the freedom to add more hours as I want. The standard work week will be only around 20 hours. I'll have more time at home to cook, relax and work on my passion; running.

Thanks again to all my family and friends that have helped me through this. With your thoughts and prayers, I've come a long way.

Saturday, July 3, 2010

Halfway Home

This week I completed the 3rd installment of 6 total treatments. Yeah baby, I'm halfway done with this harrowing experience!

So, has it really been that bad? I suppose once it's put into perspective, no, it's hasn't been as bad as I had anticipated. Here's a synopsis of how my weeks go.

Wednesday
Treatment day; it starts out like any other day, I go to work in the morning, but because my appointment is in the afternoon, I'll get off work early. BONUS! I like to have a shortened work day. Eight hours is too much work for a semi-retired old guy like me.

Now, no offense to my doctor or his staff, but I want to get out off there as quickly as possible. I admit, they are very efficient about administering the treatment. Arrive, pee in a cup, dispense the numbing gel, insert catheter, inject the BCG, clean up and I'm out of there. It really doesn't take long at all and while the procedure will never be described as pleasant, I'm getting used to it.

Once I arrive home, I do my best impression of a succulent pig on a rotisserie, without the apple in my mouth of course, though I believe Sue would like to stick it in there sometimes! I'm delicately turned every 15 minutes to allow the BCG juices to fully baste the inside of my bladder. It's important to hold it in for 2 hours and I've come very close each week, even surpassing the time limit last week. Okay, here's the fun part; next I get to pee.

Now it wouldn't be a fun blog to read if I didn't give you a little story that goes along with peeing. You know, one that makes you laugh, or maybe one that makes you think "ooh, gross!" The first time I pee after the treatment is a little strange. I'm advised to sit on the toilet, and no, I haven't been given female hormones, it is for sanitary reasons (less splashing.) After I've emptied my bladder, a rush of air comes out. Yeah, that's right, it's like I'm farting out, well, the other end! This freaked me out the first week, but it's happened just like that each week.

Thursday and Friday
Generally, I get up Thursday morning and feel great. So far, I haven't had any of the side effects they describe. I do, however, experience what I call direct effects. As the day wears on, I begin to feel more pain while urinating and the urge to go when my bladder is near empty. This seems to continue for a day or two and is directly related to the trauma of having the catheter inserted week after week. I'm learning how to control the pain somewhat with drugs and hydration. The more liquid I drink, the smoother the peeing goes. But it's a Catch 22, the more I drink, the more often I go, which is sometimes difficult when driving on the road all day long. In the evening, beer has become a staple of my diet, doing it's job to keep things flowing as well. Hooray for beer!

Saturday thru Tuesday
By the weekend, things are getting better and I am starting to feel somewhat normal. My biggest frustration is still trying to get back into a running routine, but it hasn't worked well yet. Some days I feel good and run a few miles, other days I either feel those annoying 'gotta go' urges or I just don't have the energy. I haven't been able to do more than 5 miles or a couple days a week. I know it's just a matter of time, but I'm sure looking forward to the end of the treatments and complete the healing.

Good News
This week I was given some great news from the doctor. The initial BCG cancer treatment, the 6-week course, is sometimes followed by what's referred to as a 'maintenance program', where an additional 5 treatments are given over the next 24 months. I was told that I will not have to undergo this part of the program. Did you detect the smile on my face after this news? I will only need to go in for a routine check up every 3 months for awhile, then cutting back to every 6 months, to eventually once a year. Hmm.....eventually I will be normal again?

Friday, June 18, 2010

Treatment #1

Well, the day had finally arrived; the one I dreaded yet anxiously anticipated. The first installment of the BCG treatment was scheduled this week.

For those of you (like me) with short term memory loss, let's review. The treatment recommended for this type cancer is called Immunotherapy. BCG (Bacillus Calmette-Geurin) is a live tuberculosis bacteria that is injected into the bladder. The bacteria then stimulates my own immune system to send in troops to fight the bacteria. It's like "Shock & Awe" to all enemies of the bladder; the troops indiscriminately kill all evil cells. Cancer, bacteria, they don't care! There will be six treatments, once a week until the enemy surrenders.

At 3:30 pm, I arrived at the doctors office with my body guards, Sue and Alison. As expected, once we hit the elevator to the second floor, I tried my escape. "Maybe I should consider a holistic approach to this cancer instead, let's go home!" My argument did not convince the tough minded family soldiers so on we went.

As if the medical assistant at the office knew of my internal struggle, I was called in before I even had a chance to think. OK, this is it, no turning back now. I'm not really afraid of the treatment, I'm nervous about the insertion of the dreaded catheter. The treatment will be injected directly into the bladder through the catheter.

Once my urine sample passed muster, it was time to begin. A numbing gel is applied to the area and then pushed into the urethra. After a few minutes to allow the gel to work, they inserted the catheter. I closed my eyes, took a deep breath and 'viola' (French word inserted for Alison's enjoyment!), the worst was over  in a couple seconds. As they injected the solution, I didn't feel a thing. Before long, the whole thing was over, we were in the office for only 15 minutes or so. Boy did I feel good once this was over. It really wasn't as bad as I had anticipated. I walked back into the waiting room and greeted Sue and Alison with a smile; one might even say I had a bit of a cocky smirk on my face!

Now at home, I would need to keep the solution in the bladder for 2 hours, then I was free to urinate normally. For the first hour, I needed to lay on my back, then on my stomach, and on each side, for 15 minutes each. This was to be sure the solution coated all areas of the bladder. I was a bit nervous about having to 'hold it' for 2 hours, but made it with no problem. The rest of the evening I felt just fine.

The following day, I went back to work as normal. The side effects of this treatment include fever and nausea, or basically feeling you have flu-like symptoms. None of that for me, I felt great the day after. The only thing that bothered me was some burning and bleeding while urinating and that is normal after this type procedure. A great anxiety has been lifted now that I've gone through the first session without incident.

To further boost my spirits, I went for a short run the following day after work. It's still a struggle compared to where I was 6 months ago, but it felt good to get in a couple miles. I'm feeling more and more confident every day. So, if you're a certain brother-in-law, you may want to step up your training, my next race may be sooner than I anticipated!

Saturday, June 5, 2010

The Second Opinion

This past Thursday, Sue and I met with Dr Holzbeierlein, a urological oncologist with the University of Kansas Hospital. I wanted to be sure that another specialist in this field agreed with the course of action prescribed by my initial urologist.

It was obvious that Dr Holzbeierlein was a leader in this field of medicine, as he sent in a resident doctor for the first round of questioning and the dirty work. Yes, years of experience does have it's rewards; the resident would ask all the redundant questions and have the honor of doing the digital prostate check. For those of you my age, you know what I mean, a personal space violation only a doctor could get away with! And no, it's not digital because there's an electronic device, it's digital, like one of the digits on your hand that does the work. OK, I am being a bit factitious about the doctor's roles, but there probably is a little truth to that.

Moving on, the doctors recommendation for treatment was exactly the same, however, he did want to go back in and do another scraping of tissue inside the bladder and do another biopsy. His reasoning was to be sure we removed any potentially dangerous cells before beginning treatment. I was very uneasy about having another biopsy done; this would mean another surgery and another month to recover.

So, the dilemma; should I follow the experts advice or continue straight to the treatment. Remember, regardless of whether I choose the second scraping, the long term treatment recommendation of both doctors is the same.

Here's my thought process:

* A second scraping of the bladder may slightly increase the odds that all of the cancer cells were removed. However, even if some dangerous cells were still intact, the prescribed immunotherapy treatment would likely fight those remaining abnormal cells.

* A call back to my original urologist, Dr Joseph Myers from the Olathe Medical Center, confirmed his personal observation that all suspicious cells were removed. He assured me that there would be nothing left to scrape.

* Somewhere in the back of my mind lies this feeling that since Dr Holzbeierlein did not do the original surgery, he needs to be sure in his own mind that everything inside was scraped properly, hence the recommendation to do it again. Kind of a CYA?

* Fighting cancer requires a strong mind and a strong body. I personally feel ready to begin treatment and do not want the mental setback of another surgery. I also feel comfortable with Dr Myers, his answers to my questions and his staff.

After discussing the situation with Sue, we have decided to continue down the initial path given by Dr Myers. Treatment will begin on June 16th as planned.

On a happier note, today I ran for the first time in almost two months. I was a little apprehensive at first, jogging quite slowly (uh oh, runners hate the word jogging!), but eventually became more confident and ended up laying down 3 miles of tracks. My legs felt great but the breathing was still quite labored. Overall though, I was extremely pleased with the run. I'll slowly work in more days and more miles and hopefully will feel strong again soon.

Thanks again to everybody that has wished me well, I haven't been able to respond personally to everyone, but I do appreciate the kind words.

Saturday, May 29, 2010

Just a dream?

One short week ago I was given the devastating news, the tumor was cancerous. Is this just a dream? How can I have cancer?

I'm supposed to be healthy, I eat better, I exercise more, dammit, I feel good. Surely there's been some kind of mistake.

The nurse from the doctors office called a few days ago and left a message to call her. Yeah, that's it, they finally discovered the mistake. I went to see her the next day; there was no mistake, just a copy of the surgeons and pathologist reports that confirmed the reality. OK, it's sinking in; I have cancer.

Cancer doesn't play by a set of rules, it finds it's way into many unsuspecting peoples lives. Sure I wonder "why me," but what about the 8 year old boy with leukemia, the young mother that discovers ovarian cancer, the coal miner with lung cancer that just wants to provide for his family? None of them deserved their fate either; I'm sure they all wondered why too.

"Why" is a tough question. Is it science, is it lifestyle, is it genetics or is it just fate?
Maybe it was years of smoking,
Maybe it was the constant handling of lead and chemicals in my early career,
Maybe it is the will of a greater being, striving to make me a stronger person.

Well, regardless, it's not a dream. I'll never really know why, so it's time to focus on the future.

The roller coaster of emotions I've felt the past week has been draining. I'm strong and determined one moment and crying the next. The outpouring of support from friends and family has been tremendous and believe me, I appreciate each and every email, call, or any kind of response. I'm learning to cope and with the help of my wife, I'm going to be fine emotionally. Sue is my rock! I'm also learning again how to pray; yes I've been distant from God in the past, but I look for His support too in my fight.

This week I go see a urological oncologist at KU Med Center for a second opinion. He is a surgeon and a specialist in these type cancers. I just want to be sure that more than one doctor agrees with the course of treatment. I'll update more after that meeting.

Thanks again everybody for all your thoughts and prayers.

Wednesday, May 26, 2010

The New Journey Begins

Family and Friends

As some of you were already aware, I've been struggling the last few months with some type of bladder and/or prostate issue. After a third round of antibiotics for what continued to disguise itself as a urinary tract infection, and still no relief, I finally had to see a urologist and do further testing. On May 11th, I was scheduled for a cystoscopy, a procedure where they insert a tiny camera into the urethra and explore the inside of the bladder. During this procedure, a tumor was discovered and removed. They also cut away a small section of the prostate which will help allow me to urinate better. I would not be released from the hospital until I could pee again on my own and spent 2 nights there. Today, I'm still recovering; it's been a slow process but I continue to improve each day.

This past Friday, I had my follow up visit with my doctor. This is when I learned the dreaded truth; the pathology report on the tumor came back malignant. The news was quite shocking to me as the doctor had told me after surgery that he did not feel the growth he removed was suspicious. After a day of crying in Sue's arms and the agonizing phone calls to the kids and my parents, I'm ready to fight the next battle in my life. I plan to take the same approach to this battle as I do to running a marathon. There's going to be a lot of hard work involved along the way, but it won't stop me from reaching that final goal.

OK, enough with the doom and gloom. There's good news to talk about too. Bladder cancer is very treatable and has a high rate of success. I've seen numbers that show 75-80% survival rates. When bladder cancer is detected early, the outlook is usually brighter. The doctor feels that, based on how the tumor was attached in the tissue inside the bladder, that we did catch this early on. These are all good signs in my case.

So, this is where we go next. Beginning in mid June, I will begin what is called intravesical BCG therapy. Chemotherapy is also an option but is not as effective in this type cancer. BCG is not chemo, rather it is considered immunotherapy. Look at it this way; BCG is a live tuberculosis bacteria that will be injected into my bladder through a catheter. The presence of this bacteria triggers my own immune system to send in troops to fight the bacteria, while they're fighting, they also kill any cancer cells. The BCG solution will need to stay in the bladder for about 2 hours, then I just pee it out naturally. I will receive 6 treatments, once a week beginning June 16th. After that, they will do another cystoscopy to look in the bladder and determine whether it has been successful. If so, I will then go on a maintenance program with only 5 more injections in the following 2 years.

During this treatment, I should be able to work and function somewhat normally. Of course, in any treatment, there are side effects. In this therapy, difficulty urinating and/or the desire to urinate frequently, blood in the urine and bladder infections are the most commons side effects and occur in about 50% of patients. Heck, those are the same symptoms I've dealt with the last 6 months, I'm used to it, how bad can that be!

Writing you today was not meant to solicit any sympathy, rather I'm writing to help me express out loud to everyone my commitment to beating this thing. It helps to talk about it, so don't be afraid to ask me questions. It's too easy to feel sorry for yourself and that does no good. You've all played an important role in my life and I ask that you help me try to remain positive during this entire ordeal.

I look forward to running my next "Race for the Cure" as a cancer survivor.