Quite a few things have happened since I lasted posted.
The news that we are now in the radiation stage is that other “Foot Dropping” I had spoken about earlier.
Okay I hope y’all remember kinda why I am writing this blog, most of it is cathartic for me, plus a written in my own words autobiography for my family and mainly to share my journey of a trip so many people have made, many who did not survive the journey, my hopes was to treat myself and in the process help others see and know what the inside of dealings with Prostate Cancer that has metastasized to the bones..gets treated like.
My Oncologist Dr. Christina Deraleth over at the Nashville VA now has come around to believe me about the pain I had been telling her about in my hip.
You see I have been telling her about the pain since I met her in what was that February? She’s palpated the area, and not feeling anything physical jump out at her decided to hold off on any pain adjunct. “Continue to take the Ibuprofen”
I had several months ago told my Urologist about this pain in Nashville, they prescribed to me some Oxycontin, for pain relief, now the way this med works is that is goes to the brain and it inserts itself at the synapses on the nerves coming from pain sites and blocks the return nerve signal that says to your head it hurts.
But when that wears off the pain is right back, it does nothing to address the source or cause of the pain.
I was having some pretty (for me) significant pain 7’s & 8’s on a 1 – 10 scale, and the pain pills worked, never got me high, groggy, spacey or anything, just the pain went away. That’s another thing about real pain, most times when one takes something for real pain, that med works on that pain and makes it go away, most cases does not leave you high ~~~many get high cuz there was no real pain or little pain rated for the type and amount of drug you took to get rid of it, so the meds just hung around and got em high.
Well my 6 months check up left me at the place of being diagnosed with Adenocarcinoma of my Prostate that had metz to my 7th left rib, and Abdomen Lymph Node.
Well, I left that 6 months check up and returned to my primary doctor and told her about the goings on, and she asked if they had done an MRI of my pelvis area to differentiate or classify what the degree of arthritis in my pelvic might be to assess my pain level.
That MRI showed of the metz to the pelvic, and spine of the cancer
My 9 months PSA pulled August 20, 2014 says it has risen from 4.4mg/ml to now 8.0mg/ml
Now I return to the VA with this new information and they stepped up to the next gear. My oncologist now prescribed to me some significant pain meds, put me on a Hormone Resistant Drug, Casodex ~ now this drug is suppose to interrupt the testosterone signal to tell Jerry to grow, I understand.
She scheduled for me to go see an Radiologist specializing in cancer. She wanted to radiate the area to take care of the pain, but her main concern was that some of the cancer was in the ball and socket joint of my right hip and that this could lead to premature spontaneous fractures.
When one goes to school for something, there are points and little gems that ones takes with them for the rest of their careers and teach others.
For me in Nursing School there were many, but one big one I always kept up front, “Treat the patients, not the chart, ~ Treat the patients, not the statistics, ~ Treat the patients, not the family, ~ Treat the patients not the protocol.
I said this because this is what I told Dr. Deraleth, she had not been treating me as much as treating only what SHE believed., meaning, she did not buy into the level of pain in my hips I was tellin her I was experiencing UNTIL it could be proven TO HER that it was real! So me the patient suffers until her mind is comfortable.
AND if I had not pursued this pain to my primary doctor, I’d be walking around today with no knowledge that I had cancer in my pelvic and spine.
DO NOT JUST ACCEPT THE OKIE DOKE!
Become a partner in your care, speak up, disagree, whatever!, this is about you and your family!
I can see in every doctor’s eyes I sit with~ this piece of them that is so expecting patients to come in sit down and go with what they tell ya, sure they seem interested in your input, but before you walked in that room they have reviewed your chart, they’ve called and talked to your other doctors and they, ~ watch this, ~ very seldom disagree with your primary doctor.
They’ve “consulted” with each other on how they think you should be treated and they want you to be grateful and just fall in step.
Well, with this new discovery (the MRI, they never thought to order) that I had uncovered, put me back in the driver’s seat in retaining some control over what was gonna happen to me, through this I feel I gained some modicum of respect from them. (Even though that was not the objective, I just wanted them to listen to me, consider what I was saying and then as a team discuss it and support each others decisions.)
Last week Jennie and I went to Cookeville, Regional Medical Center to see Dr. Jonas Sidrys Oncology Radiologist. (When a service in the VA is full of patients or is a service not provided through the VA they outsource to the private community, so they outsourced me to CRMC here near my home for my radiology business, they call this “Fee Based”
The VA sends the office a request, the MD’s office sets up an appt, you go in, the VA pays them, The VA keep tight control over every step of the way, meaning, they authorized for me to go consult with Dr. Sidrys,
The first question he asked me was if I was in pain, I told him my story, I told him that I have been doing a lot of research, and talking to people, I told him I looked into Alternative Medicine for the treatment of cancer, I told him I started a particular treatment less than a month ago and that I stand before him today feeling no pain, and have not felt that deep pain since the 3rd day after I started the treatment. And I have tried to illicit that pain response several times by shifting positions or movements that I knew in the past would send a jolt of pain to me and I cannot seem to aggravate it into response.
He heard me, but I don’t think he “Heard” me. At this meeting he told me that he felt that radiation was “Palliative” meaning they would only do it to suppress pain, radiation has no impact on the cancer condition itself in my body other than the focal cells its turn on, so again, just to relieve pain they will kill off certain cancer cells causing the pain.
Well, I asked my questions, Jennie asked hers. He was kinda hesitant to radiate because I was not experiencing the level of pain of cancer radiation is meant to relieve. He asked me if I had told my oncologist about this and I said yes, but she does not wanna hear anything about alternative medicine. Dr. Sidrys did not 100% feel comfortable to radiating something that had no pain, he felt to wait until symptoms dictated to us to do something to relieve it.
He really did not want to discuss alternative medicine it either in any kinda of meaningful dialogue.
2 days later he got another authorization to proceed to the next step of radiating me.
PROSTATE CANCER SUPPORT GROUP
September 10, 2014
I can’t remember or not if I told you, yes, I did, that I attend a monthly Prostate Cancer support Group, a bunch of ol’s dudes getting together to support each other through this, I learned a lot listening to these dudes of what is done, what the norm is what is off, just a lot of value information one can pick up in groups like this, inevitably you will find someone that is going through or has gone through exactly what you are.
Last month, I had scheduled a guest speaker in my Chiropractor Dr. Jaime Galperin, she came and spoke and a few of them have started seeing her, a couple of the guys are having changes of their PSA lab values spiking and there is fear that hangs in our group room, a choking kinda fear, these guys, go in there and believe and do everything their doctors tell them ~ I sit there and have become the “Alternative Therapy Guy!” in our group, some wanna believe me, but they are deeply anchored in the system to believe everything your doctor tells ya.
Well this months meeting was scheduled and I get the call saying that I was to show up and get prepped for radiation, so I was sitting in my group meeting when they came and pulled me out. Jennie and Natalie had accompanied me for this consultation meeting.
I like my Radiologist, his personality and bedside manners suit me. He respects my involvement in my care, I feel, YET! NONE of them will discuss Alternative Medicine with you, they will tell you “Well, you do what you think is best for you!, and good luck!”
His mannerism was a bit different this meeting, it was appeared to me that he had talked to Dr. Deraleth, he appeared to me less listening to me and pushing more the okie doke of “Just take the damn treatment, it’s what we do!”
I quoted him something that I think kinda caught him off guard as I tried to engage him to “consider” anything else other than the traditional standards of “Cut, Burn and Poison” (Surgery, Radiation & Chemotherapy) as treatment for cancer.
“There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.”
– Hamlet (1.5.167-8), Hamlet to Horatio
I decided to go ahead and let them prep me for radiation by inserting me into a 3 dimensional CAT Scan
He sat in the console room and identified and marked the cancers, the tech came out and marked my body with orientation marks for the Xray, then tattooed 3 spot on me.
I asked for a consultation with Doc before we set up appts and left, by this time Becky and Olivia had shown up and were in the waiting room. The nurses would not let her back because the baby, was, well, a baby.
I got up went outside picked up the baby and told Becky to follow me, I walked back there with family in tow and went in and sat in the exam room. I could hear a couple of them saying “He has a child under 18 years old”
Understand this people; Nurses run everything in any medical unit, you’d think doctors ran the show, not even close, they may have a couple things they want, but nurses set standards, attitudes, and protocols, and this medical office not to allow children back was not family based medicine. Although the Xray machines were in this office several doors down the way, I believe somebody said in their policy making,
“Hey! we better protect kids (and patients if in weakened state,) but they wear mask by keeping them out” ~~~~~ We are in the the dang examination rooms at the front of the office!!!!.
The whole family has been present in Family birthing Units when every one of my grands were born, this family does not keep the children out of the goings on here. If you know The Jackson’s, we are a family that supports each other in times of trouble.
I could tell when I looked a couple of them in the eyes that they were not gonna confront me about it, I was not in the mood for in-house politics.
The Dr walked in and mentioned that they do not let children back but they would make an exception for us. I don’t want special but I want things to be where I and my family are the ones being served and not for the conveniences, comfort or ease of staff!
I finally got the chance to lay my eyes on Jerry, Doc showed us the images, (When I get a copy, I’ll post it)
It showed about a 2 cm spherical tumor on the socket portion of my hip joint. The tumor itself was nestled in bone tissue not close to the articulating edges of the socket, and no where near the femur head (the weakest spot for fractures) . (If I could put a dot on where it was it would be on the left pix here and if you were to make a straight line from the point of the junction of green lines of the word pelvis and follow it to the right till you hit right in the middle of the two white highlighted area just before the femur head
The next tumor was nestled in the joint space between and “Almost” immoveable joint in the sacroiliac region, that tumor is about 3 cm a round.
The second treatment area would be right where it says Sacroiliac Joint
Now to me those are pretty big~~~ about 8/10th and a little over of an inch.
He spied a tumor on the bottom of Lumbar 3 of my spine well away from the spinal cord, and a another suspicious spot on the top of Lumbar 4, he said he is not treating these as they are not exhibiting pain, I asked, “Yea, but won’t they grow?” He said “Not necessarily!”
So we are looking at treating just the 2 in my pelvic area.
“Treat with what” I asked “30 Grays of Proton Xray” he replied, for 10 treatments, that would be 5 days a week with weekends off times 10 days.
He said I would be laying on my back and he would actually go through my back and I might have a slight sunburn on my back….
“Okay Doc, what about organ involvement, long term effects and lasting residuals?”
Well, I guess if one had to have radiation I think this may appear to be on the list of what might be good in a bad situation that you can have.
He said He would go through the back, and there are no organs for the ray to go through…first!..going in~~~ but the ray will continue from my back and up through the organs on the inside , which would be my intestines, he said the rays would start at 120 of 30 Gray Photon Xrays as they entered my body, by the time it hit the the intestines and exit it would be at 10% of the original 120.
Proton therapy and X-ray therapy both kill cancer cells by preventing them from dividing and growing. The difference between these therapies is that protons can be controlled, depositing the greatest amount of radiation right into the tumor and then stopping, allowing patients to receive higher doses with less damage to nearby healthy tissue.1,2 In contrast, X-ray radiation releases substantial doses of energy to healthy tissue and organs on the way to the tumor and continues to deliver radiation as it leaves the body.
The extra dose to healthy tissue from X-ray radiation can be as much as several hundred thousand dental X-rays.
“Okay, what about residual,?”
He got up and walked over tho the door and said, “It’s just like this light switch once I turn it off, it is no longer in your body!”
Jennie said she knew someone who had radiation treatment and they had to stay away from people for so long cuz they were radioactive….”Yes! Some are like that!” he said but this is
not that kind of Xray.
The following information is from my research after this meeting ~ NONE of this has been shared with me by any of my doctors.
Pelvic Bone Changes
Unfortunately radiotherapy treatment for cancer in the pelvic area can sometimes lead to hip and pelvic bone problems later in life. Radiotherapy can damage our bones in different ways. Problems after pelvic radiotherapy may include
Weaker Pelvic Bones
Radiotherapy can damage the bone cells themselves, and also the supply of blood to the bones. The blood supply delivers nutrients (food) to the bones. Without these nutrients the bones become weaker. When bones are damaged because of a loss of blood supply, this is called Avascular Necrosis. Damage to the bones can cause pain and sometimes makes it hard to walk or climb stairs.
Your doctor may monitor you carefully after pelvic radiotherapy, including checking your bone strength with a DEXA scan. They may suggest treatment with painkillers and walking aids to help you get around, such as a stick. You might also take drugs to strengthen the bones called bisphosphonates. These drugs can help to control pain and reduce the risk of fractures.
Tiny Cracks In The Bones
Sometimes, tiny cracks can appear in the pelvic bones some years after radiotherapy. They are called pelvic insufficiency fractures. This is more likely to happen in people who have general weakening of their bones as they get older (osteoporosis). It is also more likely in people who are taking hormone therapies or steroids.
The pain in this case can be quite bad. It usually gets worse if you move around or do exercise and gets better when you sit still or rest. This type of pain normally goes away overnight. It does not stop you from sleeping well. Your doctor may ask you to have X-rays, a CT scan or an MRI scan (or a combination of these) to see if there are any fractures in the pelvic bones.
If there is a high risk of fracture your doctor may recommend a hip replacement or surgery to strengthen the bone. Your doctor will ask you to see an orthopaedic surgeon (a specialist in bone disease and repair). Surgery for a hip replacement means a stay of about a week in hospital, as well as several weeks recovery time afterwards.
Well I have already been diagnosed with Osteopenia
What is osteopenia?
Man, I have read so much, listened to so many stories, and have professionally experienced so much over my years in my career on this subject,
I am kinda seeing “There is NO Template!”
I’m gonna take a little break from the exam room here and will work my way back to the conclusion of this.
Becky said Yurgen was going on lunch break, Yurgen works in the Cafeteria on several different levels within Food Services, going on now some 3 or 4 years…so Becky and the kids
go there often to meet with him, and we have in the past also, its neat to see how much their little family are loved and respected in that department, Olivia gets pass around between
several employees and the kids know their way around that place like second home.
So while there Dodah calls and asked where we were and she joined us for lunch.
I gotta say; I have absolutely loved my job of taking care of my family all these years…its was not hard at all for me to be a father, I wanted to be one really bad…yeah, I’ve messed up
some ~show me that man that has never and I will tell him he’s lying!
I said all that to say this ~~~I am real awkward when I see my family rally round me, I mean, wanting to go to Dr. appts, talk to and ask doctors questions and give me their feelings
and input ~~~ I have never ever since Mama stop doing it ever been taken care of like. I am not used to being a recipient of health care, it does make me smile and feel real good
though towards those that do care and inquire ~ I got a bunch of folks who are on the fringes of contact with me, either scared themselves, uncomfortable of what to say or fearful of
their own mortality, I know they care, but do not know how to express their concerns,. I so understand that ~~~ this area is not for everyone to be able to master as easy as tying your shoe lace.
We left there and all headed for Livingston to go see Jaime for adjustments, but she was closed until 4pm, so the three of us went up to KY to the Amish for fruits, vegetables and to
see Reuben, an Amish Iridologist
Iridology is the study of the iris to diagnose disease. It is not part of the curriculum of any medical school and its practitioners are not usually medical doctors. iridology is not regulated or licensed by any governmental agency in either Canada or the United States.
Iridology is based on the questionable assumption that every organ in the human body has a corresponding location within the iris and that one can determine whether an organ is healthy or diseased by examining the iris rather than the organ itself.
Remember now, this is me ~~~ you do you~~~ I ain’t saying what I do is just right for you, so just accept this is ~~~ me~~~
I know some of my old buddies from waaaay back be joking at this “experimentation” of watching me go through this, we laugh as we talk of whuppin up on ol’ Jerry!
“The eye is the lamp of the body. So, if your eye is healthy, your whole body will be full of light,” Matthew 6:22
2 weeks ago, I walked into this man’s office, told him my name and he shown a light into and looked in my eye with a magnifying glass,~~~~~~~~
“Are you having any issues with your Prostate?”, Well that’s not much of a no-brainer to me as I am a elderly man, and “EVERY” elderly man is going to be having some kind of issue
there. He said that my spleen and liver were showing hyperactivity, suggesting they are fighting something. He gave me a list of herbs and treatments he suggested for various issues
he saw with me, he did the same for Jennie and Becky.
Items with black dot are the things he suggested for me, Jennie & Becky had their own issues.
Well, now we’re back after researching things he prescribes, naturalism goes back to the first leaf man picked and chewed, what is relevant for me today is;
when? what? kind of naturalism? and I
guess it would be pretty important who? you are getting this information from and how they produce what? they sell you.
Absolutely everything they have there ~~~~ you can buy in pill form~~~~
You know that was a joke, right? (meaning pills are made from or synthesized from natural plants)
So here we are at the Amish Store on a very special day, its community harvest day of Sorghum
Was real special, I was definitely a novelty to the kids of whom they had rounded up the whole community, these kids were headin off to “strip’ the Sorghum.
We loaded up on organic vegetables, preserves, fresh Sorghum and went over for a visit with Jaime, in which Jennie used the ionic detoxifyer for the first time and says she feels
Getting ready to close this out and pick up what happened in the exam room as this is a situation still – in-progress.
Jennie and I are headin out tomorrow morning heading for Mobile Alabama, to judge a horse show followed by 2 days of Dressage en Gaite Clinics