Here are my random thoughts as I get a grip on having cancer at 42 (now 49) years old. I would like to inspire hope in all of you and in myself as well as to provide a place for you to keep track of me through this ordeal.
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!
During last month's Greenhouse fundraiser I met a great couple, the Clarks. She invited me to attend a support group they are members of and asked me to share my journey. I gladly accepted though I did so with some trepidation. Most times I can tell the story and speak of the treatments and issues we've experienced with ease. Other times it becomes too emotional.
Tonight was their monthly meeting and Mary and I fought our way through a massive thunderstorm to arrive about 10 minutes late. The meeting began with the members of the group sharing their names and their stories. I was by far the man with the most advanced diagnosis and based on some of their expressions and reactions, I think they were somewhat stunned by our journey.
On a daily basis I guess in some ways I forget everything we've been through. When I lay it out like I did this evening, and tell 'our story' it is sort of overwhelming. I am glad to report I completed the tale without getting emotional. There were a few points when I had to pause and take a deep breath.
I share all this as a prelude to the latest chapter in the journey. What I am about to share is certainly a new part of the journey.
First the blood test and MRI: my PSA was down almost 18% from the previous week! And the MRI expressed some stable area but others there showed noticeable increase in activity. The Radiologist was careful with his assessment, they always are, but this time he was comparing the MRI to a CAT scan from last October, eight months ago. The one area that was rather clear is my right thigh has a tumor that has nearly tripled in size. I wish there was more to report but that will come tomorrow when we meet with the Radiology Oncologist. It is all but guaranteed that My next step in dealing with the pain will be radiation treatments. The question remains how many? Will we go after the hips and the leg? How successful can we be without compromising my bone marrow in case I need future chemotherapy?
Only time will tell, fortunately, time in this case, is less than 12 hours.
First off, do any of you remember Kreskin? He was a psychic that occasionally appeared with Johnny Carson on the Tonight Show. He could predict events, bend things with his mind and tell the future.
I could use a bit of his foresight right now. Tomorrow at 3:00 we will meet with the oncologist to review the MRI I had on Friday. This is perhaps the most anticipated test since the beginning of this whole ordeal five years ago.
The pain ns my hip has definitely become more manageable for the most part. Since starting the pain medication last week, things have gotten considerably better. There are still incidents several times a day. I have been able to sleep fairly well each night followed by a rather normal day until late afternoon. Some days, like yesterday I might even make it as long as 9-10pm before I have an 'event'. Other days like today,itt happens between 3-5pm. I have been rather religious about taking the pain medication every 5 hours so it's not like the lack of medication brings it on. Also, I have been all but inactive so it's not like some physical action brings it on. For the most part, these pain events last an hour or more during which I cannot find a way to get comfortable. The pain leads to muscle spasms which then create muscle fatigue and other related pain.
This is probably a lot more detail than necessary but I need to share, it helps the time go by. I've watched far to many movies this weekend and disc golf is out of the question for a while. There is a very,very minimal chance this is related to arthritis, but reality and intuition tell me otherwise. If the MRI reveals a change in the tumor, or multiple tumors in my hip joint, then we anticipate the treatment will be radiation. This does not scare me at all. As a matter of fac,t I welcome it if it means the pain goes away.
Those of you that know me well probably tire of me pointing to the irony of events. I hope this one make you laugh. On Friday, as I prepared for the MRI, the technician asked if I wanted to listen to music during the procedure. Sticking with my latest musical fetish, I chose classic rock. About 15 minutes into it, what song do you think comes on? None other than the Blue Oyster Cult classic 'Don't Fear the Reaper'. I'm pretty sure the laugh that I let out was heard by the technician in the other room!
First and foremost, thanks to everyone for helping with Brad, the dog, dinners, and most importantly, the thoughts and prayers! I attempt to thank you, but words fall short.
Yesterday I had an x-ray of my right hip. The result was confirmation that there was arthritis but we already knew that previously. Everything else appeared stable. My oncologist is on vacation but his physicians assistant agreed the level of pain is too great to be arthritis. So Friday I'll have an MRI then Monday meet with the oncologist to decide what to do next. In the interim, I am on painkillers to try to manage the pain. I am moving slowly and carefully catering to my right hip and leg. If the MRI confirms micro tumors, then radiation will be next. As scary as that may sound, I look forward to it as long as it relieves the pain and I can put aside the painkillers.
Overall, yesterday was the best of the last four, although getting comfortable enough to fall asleep remains a challenge. Once I do fall asleep, I have been sleeping like a baby!
In closing, a brief excerpt from from one of my favorite R.E.M. Songs....
R.E.M. - Everybody Hurts (an excerpt)
............ Everybody hurts Take comfort in your friends. Everybody hurts Don't throw your hand. Oh, no Don't throw your hand If you feel like you're alone, no, no, no, you are not alone ......... Everybody hurts You are not alone
Mary and I started the weekend off by spending the night on the Country Club Plaza. We had a great dinner and a few adult beverages as we enjoyed a much needed evening away.
Our elation was shorted lived however. Saturday afternoon and into the evening my right hip started to hurt. It was the same pain, with the same severity that I have been experiencing off and on for a few months. By Sunday morning it had become rather severe. Medical professionals use a 1-10 scale to ask patients to describe pain. Though I have a rather high tolerance to pain, the upper end of the scale was an area I had yet to visit.
While Advil has always proven to be the miracle cure for my pain, this time it failed me. 800mg didn't even put a dent in the level of pain. We called my oncologist and waited for the return call. The oncologist on call was very nice and suggested we try alternating Extra Strength Tylenol with Advil, option 2 was the ER.
I'm not going to go into all of the details of the past two days, I'll just say that it was at times impossible to get comfortable and there was a four hour period when I virtually could not move. Although Tylenol helped me to sleep Sunday night, that was about it. By Monday morning we were at KU Medical Center picking up a prescription for a pain killer. The pain has subsided enough that I again was able to sleep. We are now headed down to the KU Cancer Center to get blood tests, an x-ray and then visit with doctor at 3:00.
The doctor in me believes this has to be more than arthritis and related to the tumor in my hip.
This is all I know for now, details to follow tonight or tomorrow.
