When first diagnosed with cancer we try to come to grips with ‘Now what’? “Now what” with my life, my treatments, my family, my career and so on. The trepidation of now what does not end with the initial diagnosis, it goes on and on. With every up and down, every good test result and every bad, your mind immediately returns to the constant questioning. Now what?
I know some of you may be saying that this is no different than life in general, it’s just human nature to question the future, to wonder what lies ahead. While I have no argument to counter, I do believe that it is much different for those of us with cancer.
My journey, though a tad short of six years, is a constant journey of questioning. Every four weeks I visit my doctor to be retested. The results of these tests never lead to peace in my mind or in my heart. If the numbers are good, I question ‘For how long?’. When the numbers are bad, like they were last Monday, I wonder ‘Now what?’. The very limited number of options I have continues to be a challenge and weighs heavy on my mind. There are three or four things I can do next, but none of them really provide substantial relief for my heart or mind.
I am not writing this from a place of depression, I’m actually in a great place mentally. I’m just trying to make a point so that when you see me, or talk to me and I say ‘Oh I’m doing fine’, it’s a little more complicated than that…actually it’s much more complicated. I try my best to remain hopeful. I just wish for a little while that I could get a reprieve from the ‘Now what”!
Ain’t got no trouble in my life No foolish dream to make me cry I’m never frightened or worried You know I always get by. I heat up I cool down Something gets in my way I go around it Don’t let life get me down Gonna take it the way that I found it ~~~~~~~~~~~~~~~~~~~~~~ Through all the ups and downs of this battle, the one thing, aside from the support of Mary, family and friends, that is a constant and that is music.
For you regulars you know my taste is all over the place. When I wrote this on Wednesday I had already listened to a variety consisting on amongst others; Peter Frampton, Frank Zappa, Jason Aldean, Kenny Chesney, Dave Brubeck and Keb Mo.
It’s the escape, the flood of memories, the highs, the lows, the smiles, the tears. I never learned to play an instrument, I wish I had. No regrets becasue not being able to play has not tempered my love for music.
As I mentioned yesterday, one of the options that might be available to me is a new drug called Provenge. Though this treatment was approved by the FDA back in April, Medicare is still dragging their feet. I do not have Medicare, but this decision has an indirect impact on my insurance coverage because most private insurers follow the lead or negotiate the amount they pay the pharmaceutical companies, based on the decision of Medicare.
The Medicare Evidence Development & Coverage Advisory Committee (MEDCAC) of the Centers for Medicare & Medicaid Services (CMS) meeting is Wednesday, Nov 17th. Discussion will focus on the currently available evidence regarding the clinical benefits and harms of on-label and off-label use of Autologous Cellular Immunotherapy Treatment of Metastatic Prostate Cancer (aka Provenge), and if it is adequate for the Committee to advise that the treatment costs be covered by Medicare.
THIS should be very important to all of you, regardless if you or a loved one has Prostate Cancer. Why? This is a landmark and historic decision by MEDCAC as they are evaluating for the first time ‘how much is too much’? Depending on their decision, it could have historic impacts on other cancer treatments, as well as other medical treatments in general.
We still need your help…
For those of you who have not already signed the petition, please do so by clicking the links below. If you have already signed it, I thank you for your action, but ask you to please forward this email to family, friends, and anyone who might be interested in signing it.
After five and a half years and nearly 550 entries you can probably imagine that there are many, many times that I struggle to come up with a subject that is even faintly interesting. This is particularly true when things are going well medically. This is one of those times.
Monday was my recurring four week appointment with my oncologist. The results were once again favorable, my PSA is down again and now stands at 28.69! A reason for celebration! I just checked and this is the lowest level since December 2007!
I woke up Tuesday morning and thanked God, for a number of things: Mary, Brad, the support, love and comfort I receive from friends, family and strangers, and finally, a win by the Kansas City Chiefs! I try, most of the times rather feebly, to explain how much the process of living with this terminal disease has changed me. I look at things so differently and I hope some of you can see the changes through my actions and how I live my life. I am certainly not saintly, without sin, or without set backs, but I try to live a life that is more balanced and less stressful.
Less stressful you might be asking…How is that possible when you are living with a cancer that will, without a miracle or scientific break through, ultimately take your life? It’s really no secret, just don’t sweat the small stuff. On a daily basis nothing is going to transpire that will make a significant difference in the outcome. Eating right, exercising, remaining spiritual, are all required, a given if you will. So enjoy the little things, stop and smell the roses.
Of course, as always, the title of this post signifies multiple references.
First up, I played disc golf both yesterday and today. Though I played well yesterday, today I was challenged by a course I have never played before and I stunk it up! I was even after five holes but the wheels fell off. Regardless, it was fun to be out again and play with Eric, Pete, Tim and the four Steves.
Next, and more importantly, tomorrow marks twenty eight days and that means it’s time to go see Dr. V. I feel really, really good, but as always, that doesn’t mean a thing. The routine will be the same; visit the lab for blood draws, infusion area for a Lupron shot and Zometa infusion then off to see the doc. You would think that after five and a half years (67 months) I would be used to this uneasiness. I’m not sure I ever will be comfortable before these appointments. So, I take a deep breath, enjoy the opening weekend of the NFL and try to get a good nights sleep. I can’t control what happens tomorrow, it is and remains in Gods hands.
In addition to the doctor tomorrow, we have an unbelievably busy two weeks ahead of us. I won’t bore you with the details now but I will provide updates as things progress. We are very much looking forward to the 6th annual FLHW golf tourney, which is now less than 2 weeks away. No rest until the 25th!!
If any of you have watched the recent HBO mini series, The Pacific, there was a quote I had written down from Episode 2. I’m not sure the exact context of the statement. The series, produced by the same team that produced ‘Band of Brothers’, provides a glimpse of what these wonderfully brave men went through in order to defend our country. It’s rather gut wrenching at times.
The quote, “There are times when you just have to pray, and hold on”, stuck with me.With treatment and a doctor appointment coming up once again, I find myself in the 28 day funk I have mentioned here before. These four weeks between appointments just seem to fly by some months.
I’m feeling great and believe, as Dr. S pointed out, that the radiation continues to provide benefits. Even with his recently positive comments, I don’t know what will happen next week, next month, or next year, but then again, do any of us?
No worries, I’m fine, it’s just one of those moments when I find myself holding on and praying.
I’ve written here are a few times about a recently approved and very exciting new treatment for advanced prostate cancer, a drug known as Provenge. Well it seems the demand is far exceeding the company’s capacity to keep up. This is something I saw first hand back in March and something that the company has been very clear about since the FDA approval in late April.
It’s just kind of sad to see in writing and know that even after Dendreon expands their existing facility and opens two others by the middle of next year, it will take some time to clear the back log of patients.
By the way, the title had nothing to do with my personal situation. Yesterday I received my 14th and final radiation treatment. For the most part the whole process was easy. I had some increased pain the first week and was rather fatigued as well. I have however been completely off pain meds for a week now and the fatigue is in the past as well.
We met briefly with the radiation oncologist and I can begin to exercise again but to avoid any exercise involving my legs for the next few weeks. Walking will be fine, but I have to avoid sit-ups so there goes the six pack abs I was working on! Disc golf of course is still a non-issue for at least two months, that is a hard pill to swallow, but I am very thankful that the pain is gone.
Sitting here watching the US Open, it suddenly dawned on me that it had been awhile since I posted. Not only had it been nine days, but so much has happened. Once I explain it all, my negligence will be understandable.
After my first three radiation treatments, basically over last weekend, I found myself once again in some considerable pain. The odd thing is that the pain on my right side, which initiated the radiation treatments was completely gone and now it was my left hip and femur that were causing discomfort. It was not nearly as bad as what I had been experiencing with the right side, but it was pretty darn close. Sleep was tough because I could only get slightly comfortable on my back. Using the Oxycodone every 4 to 5 hours, I was able to get through the weekend. On Monday I went in for my 4th radiation treatment and met with the Radiology Oncologist. I left with a prescription for 12 hour, time released Oxycontin. What a God send! I’ve been sleeping great since and was even able to return sleeping on my side that first night. Two days later I completely stopped taking the other pain medication during the day, so I now only need it at night to get some sleep without interruptions from pain.
Today I spent most of the day in the yard. My contribution was minimal, but I was able to pull a few weeds, stake and tie up the tomatoes and provided a slight bit of help to my brother in law as he worked feverishly through the heat of the day to replace some wood trim on the house.
On a related note I discovered something today; there are times when you just have to step back, face the facts and let people help you. I have always been the type to help friends, family, etc. Whether it be with a project in the yard, repairing a computer or whatever, I really take pride in lending people a hand. I however find it difficult to ask for help. Rich taught me something today, other people like to lend a hand as well! As I sat in the shade and watched him work like a horse, I knew how he was feeling. I truly appreciate his time, hard work and support.
Tomorrow is Father’s Day, and I think I’ll take some time to enjoy it! Brad is back from camp, Monday I have my monthly check up with the oncologist (hoping for another decline in the PSA!), a Lupron shot, and a Zometa infusion. After we have the visit at KU Cancer Center, Mary will take me over for my 9th of 13 radiation treatments.
Here are a few lyrics of a song I was listening to while writing this post ~
Life is a carnival It’s in the book Life is a carnival Take another look
After today, and for some unknown reason, I’m feeling a but childish tonight! When you get through reading this update, you will probably think I’ve lost it. After five years, actually 64 months, nothing about this whole ordeal will EVER get me down. I say that with complete confidence, it will not!
First off, while searching for another video I ran across this classic. This is back from the days when cartoons were cartoons. Enjoy, perhaps it’s inclusion here will make more sense if you first read further.
Today, if nothing else, should be described as a whirlwind. At 9:00am we had an appointment with my Radiology Oncologist and by this afternoon I had already completed my first radiation treatment. I guess some details would help?
First, before I forget, the steroids are working, I went 19 hours between doses of pain pills! Better ye,t the steroids did not keep me awake last night, I slept for seven and a half straight hours!
Our meeting with Dr. S was great, as I’ve said here before, we have been lucky to have always found wonderful doctors throughout this whole journey. Dr. S is another example. Initially, he spent 45 minutes going over the details of the MRI. I created a picture on my iPad to illustrate what I am about to share. Please look up at the title of this post if you have any doubts about the quality of the picture! Here’s what you are looking at and what we discussed. This is my legs and torso, my femurs are black, my bladder is red. I’ll start with the bladder and the green meanies. The green areas are swollen, cancerous lymph nodes and this is not good. They are not only pushing against my bladder but they are pushing against nerves and muscle and hence, the source of most, if not all of the severe pain I have been experiencing as of late.
The gray areas on the bones are also tumors. According the Dr. S the areas further down the femur on the left in the picture (my right side) and the circle on the right side in the picture are of less of a concern. That’s easy for him to say! If you think they look pretty scary in this wonderful illustration, you should see them on an MRI image! Mary and I, as you could guess, were more than a little shocked. The areas at the top of both femurs were almost as concerning, for another reason. Due to the amount of weight, stress and rotation in this area they are very susceptible to fractures and as the right side of the picture shows, I got some problems!
The good news in all of this, and believe me, there is good news, is that there were no fractures. On top of that Dr. S is 100% sure he can kill all of the cancer in each of these three areas. This will also only take thirteen radiation treatments, each only lasting about 8-10 minutes each day, and I already had one today.
A word of caution however, killing 100% of the cancer in these areas only means the cancer in these areas. It is not able to kill the cancer cells in my prostate, the area in my ribs nor all the other micro-metastasis that may be in other areas.
It also probably means my disc golfing days are over, at least for the next 3-4 months, but perhaps for good. I will be walking, keeping score and joining the gang and hope to return to doing atleast that much by mid-July. Yes, Mary, I heard him, I have to be very cautious!
