Posted 2/26/2009 1:21 PM (GMT -7)
An update.
Last week I posted the following:
"Hi...my name is Shane.
I'm 43 and last year I was Dx with giant cell tumor of the sacrum. I had to have a 14 hr surgery to remove the tumor and sacrum...24 units of blood and 3 months in the hospital. I was told I was cured. I have to self cath every 6 hours and have a colostomy.
Yesterday on a follow-up MRI (Johns Hopkins) my report read "Enhancing 1.7cm lesion in the left prostate peripheral zone. Please correlate with PSA levels. Prostate cancer cannot be excluded based on the image findings."
I decided to see Dr. Ballentine Carter, Director Division of Adult Urology Brady Urological Institute Johns Hopkins. I'm fortunate that I live within 50 miles of the institution.
Before speaking with him, I spoke with my surgeon who preformed my sacral operation, and he, like Tony, thought it was likely that the lesion was caused by the extensive work that was done in my sacral region. Tony was kind enough to look at my MRI report and answer a plethora of questions and concerns I had. Thank you Tony.
Yesterday I met with Dr. Carter, and after he looked at the MRI he too thought it was unlikely I have PC. Regardless, he ordered a PSA test. My results came back today as 0.9ng/ml. He said the was perfect and thought nothing more needed to done except to be tested again in six months.
For the past week, I've been mentally down and frightened. I hate to complain, but my family and I have been through a lot and I just wanted a break from the C word.
I'm very relieved, but I'm also feeling some guilt. When you've had cancer, you know what others in the same position are going through. When I came to this board, its members reached out. I feel guilty for having the good news, while I know others are having to battle, even though I've been through the battle before myself, albeit for something different. I start asking why was I told I was cured, not only with my sacral cancer when the the odds were around 25 -35% survival post operation, but also in October when they found a mass in my gallbladder and I had to have an open cholecystectomy and hepatectomy only for the mass to be benign...and now this...and again I escape. I should be ecstatic, and I am happy indeed, but I feel that I have the obligation to give back in a major way.
My prayers go out to all of you, and I sincerely appreciate the kindness that was bestowed on me during my very brief visit.
If any of you ever have questions regarding having to self intermittently cath, colostomies or sexual function with nerve loss (I have to intermittently cath every 4 to 6 hours since my nerves from my S2 down were removed due to a sacral giant cell tumor, plus I have a colostomy and I am unable to have an erection, although I can have a mild orgasm) please feel free to contact me. I have a experience in all these areas from a patient perspective and would love to give back to anyone on the board who needs support in these areas. I'm currently a patient advocate for Johns Hopkins in regards to those who are undergoing or have undergone a sacral operation, thus I'm used to listening.
Also, if any of you decide you want to come to Hopkins for treatment but live outside the area, you are more than welcome to stay at my home, and or, I can also provide transportation to and from the airport and to the hospital if need be. I also have a lot of contacts within the hospital and can typically refer people for quick appointments instead of having to deal with the long scheduling waits. I have contacts with Neuro, GI, Pancreatic, Plastic and now Urology. I've been successful getting people in need into the correct surgeon within days, vs. weeks or months that some find happens when they go through the normal scheduling offices. So please fell free to contact me if you need my assistance.
These are tough economic times and I know that any amount saved is important. My wife is a wonderful chef (I say chef and not cook, because she's incredible) and she loves to cook for others and we have a cozy abode in which you're welcome to share with us and our small family. Your wives/partners are also welcome.
You can contact me via shaneknee@gmail.com or sknee@lifeclinic.com hm 301.926.9643 mbl 301.370.8165
On one last note. I'm a believer in sound medical advice and protocol. However, I'm also a big believer in the power of prayer. Me and some others run a prayer list with over 500 prayer partners from all over the world. It's non religious affiliated and non denominational...we have Christians, Jews, Hindus, Muslims and those who are just spiritual. The list goes out several times a month. We've had MANY MIRACLES of people who have had difficult prognosis, only to be told after being put on the list, that they've either been cured or they're in remission. I know it's hard to believe, however, it's the truth. We provide updates on the list. You do not need to give your entire name, rather all we ask is that you tell us what you want to be prayed for. To be on the list you do NOT need to pray for others. As-a-matter-of-fact, many of those in need of prayer ask that they not get the list, rather just knowing they're being prayed for be so many is enough. I also make a pilgrimage when I can to Lady or Lourdes in Emmitsburg MD, and take the list of those in need to Father Jack. http://www.msmary.edu/grotto/
Like I mentioned previously, I'm a believer in science, sound medical protocols and modern medicine, however, Father Jack has reaffirmed my belief that science is simply God's language of revealing to us his power of creation and laws of the universe outside the written Word...and when it comes to medical treatment and cures, they don't always come by way of a pharmaceutical company or skill of a surgeon, alone. Who gives the gift of steady hands to the surgeon, or the ingredients in the life saving medicine? And is medicine and medical intervention the only treatment protocol? I say not, and I say this because I have personally witnessed miracles that I know were because of direct intervention by Father Jack and others like him and through the power of prayer.
Please note that Father Jack does not boast about such an ability, and we must remember that a miracle is not always by way of a cure. We must be steadfast in accepting God's will, respecting that what we don't understand does not mean that God is not working in our best interest. However, I humbly submit that I've witnessed Father Jack's gift of God healing, through him, first hand, I've met many others who proclaim the same thing.
If you'd like to know more about the miracles I've witnessed please feel free to contact me shaneknee@gmail.com.
You won't meet a nicer kinder soul, than Father Jack Lombardi. I encourage you to visit the Shrine and Grotto if you're ever in the Emmitsburg Maryland area. Also, be sure to visit this Web site http://www.emmitsburg.net/grotto/father_jack/list_of_homilys.htm
where you can read many of his inspirational and theological writings, which I like to call "From the Desk of Father Jack."
Peace and God's Blessings to all of you and yours...
Shane