Tuesday, September 24, 2019

Approved!

So in eight days the procedure was approved. So next step is I head down on October 4th to get my SpaceOAR and my Fiducial Marker Seeds. The SpaceOAR is a barrier between my prostate and my rectum that blocks radiation, and the Seeds are the crosshairs so they can line up the Proton Gun and hit the prostate the same way every time.

I will then return on the 7th or 8th for my simulation, where we walk through the entire process, and I find out what time my treatments will be and for what duration (most likely 28 days)

So great news, and another step in getting cured.

Wednesday, September 18, 2019

Back From Emory

The people. I believe in their people. Every single one of them that I have met. The last time I was there I was numb, somewhat tunnel vision compared to this time. This time I saw the friends, the spouses waiting as their loved ones were getting treatment, there was some excitement, some hope, some were there because, well it's another day on their journey. Wordless communication is a powerful tool. The expression I see on some as I tell them my diagnosis the first time, the expressions I see on all of you, and it gives me strength, you all have to digest news, and some of you choose your words carefully and some of you react, like, kick it's ass. You are all with me on this journey and I am so thankful for all of you. All of you are helping in different ways, there is not one right way or wrong way. You are all special.

This post is all over the place, I know, all the people I have spoken with over the last few weeks at Emory came out of the woodworks to great me, they really are great people. I am in great hands. All the time, work, and research has been done, I have signed all the papers, now it is in the financial departments hands as they attack the insurance provider. With over twenty years of research, Proton therapy is still considered relatively new, prostate surgeries can be traced back to early 1900's, so health insurance likes to go with what it knows, I was told by my doctor that it was good that I had a surgery consult, and that I have met with other radiation oncologists, this helps in their arguments with the insurers.

Emory will keep me updated, and I know I will be reaching out for the updates as well.

And Hospital A did get their info to Emory. It took 6 business days to send notes from four visits. It wasn't even 4 paragraphs. All the hoops that have to jumped through are crazy, I know there is a reason, whether legal or company bureaucracy, but man is it crazy.

Monday, September 16, 2019

It is a mental game

The more time I'm given the more time I get to think. My older brother right after I told him my diagnosis said, you need to keep yourself busy, but if I stay busy, then I get tired... so keep staying busy and you won't notice you are tired.

For those who may also go through this I want you to know that the mind is a powerful thing. Negative thoughts arise, and try to grow. Last week I got the best news I could possibly get, which has lifted my spirits in my quiet time.

The two worst parts of my day used to be driving anywhere, and trying to go to sleep. I look back at all the research I have done. All the experts I have spoken to, all the patients I have spoken to, and I believe I have made the best decision for me moving forward with my treatment.

You will hear from others, that this is a very treatable cancer, the doctors have given me my scores and are confident that I am T1, Gleason 3+3, the MRI has come back beautiful. The mind will still work on you.

This may or may not be a pointless post. Just true stream of thought stuff today.

Not sure I've recommended this book yet so here it goes:

Why We Sleep: Unlocking the Power of Sleep and Dreams, By Matthew Walker

Friday, September 13, 2019

Hospital A vs. Hospital B

So this past week I have spent time trying to get my medical records down to Emory. Hospital A, who originally diagnosed me, who was going to do the surgery, who said it would take 6 weeks to get and MRI and then another 10 days after that to get my results, is the one that uses a third party to manage my records. They are the ones that you need to wait 48 hours after a request, to check on the request. Well, it was 9/9/2019 when I made the request. It is now 9/13/2019 and I still have not gotten a straight answer. It has gotten to the point where they gave me a phone number today to call, and of course no one answers, no voicemail, no option 1 for an appointment, nothing, just a few rings then beeping.

Hospital B, the one that could get me in for my MRI 8 days after I requested. The one I called this past Wednesday for my results (4 days after my MRI) and they called back to give them to me. On Wednesday I requested that a CD be available for me to pick up by Monday, because I'm heading to Emory on Tuesday. I called today, Friday, to see if they were able to send the information. I could not reach the doctor, but the receptionist put me on hold, and went and found the CD. So I just ran there to pick it up, all this before noon.

I called Emory, said I've got the CD, want me to overnight it. They said, we actually just received the images and the pathology from Massey. So the Doctor already sent them. So from Wednesday afternoon, to Friday my records were all sent from Hospital B. It's been since Monday for Hospital A and I cannot get a single person on the phone who can help me out. Emory is calling them constantly to get my records as well.

Again and again, the lesson as the patient is you have to stay pushy. With hospital A I feel like Forrest Gump when he is on the bus that first day... "Seat's taken... Seat's taken..."

Wednesday, September 11, 2019

48 hours means 48 hours?

So I called the urologist to release my records to Emory, so they have everything. I had already electronically requested the release on my patient portal. The urologist said they do not handle those and she was polite and forwarded me to the company that handles the requests.

So another lady answers the phone and I request that my records be released, and she stated, well you will have to wait 48 hours before we can honor the request. (speed of the medical community). The beauty of the patient portal is that is time stamps all actions. So as I stare at the screen it says I made the request at 9/9/2019 at 10:17 AM. It is 9/11/2019 at 9:08. So I tell her the time stamp on my computer, and she says, well then call back tomorrow and we will handle it, then I explain to her, that in an hour it will be 48 hours, she goes back to her form...well you have to wait 48 hours before we can honor the request, okay so I will call back at lunch... do whatever you want...

I have met and spoken to so many people during this process, and the amount bureaucracy and handcuffing is crazy. *The larger the institution the less people are empowered to assist.






*that is my opinion, do not take it as fact. You never know what kind of day people have had before you run interact with them. I'm a Redskins fan, so most Monday's are pretty rough.

"You have a beautiful MRI!" - says the doctor

Just received a call from the doctor who successfully got my MRI approved. Her first words were, I'm going to make your day. You have a beautiful MRI. It barely shows a Gleason six. There are no lesions, it has not spread to your lymph nodes.

I am almost in tears (without hormone therapy).

Tuesday, September 10, 2019

Health Insurance?

Still waiting on the results from the MRI. I expect a few more days. In the mean time I spoke with Emory about scheduling. First I need to have a doctors consult, this is done in person, was hoping some skype action. Instead I am off to Atlanta to have my official first visit.

I spoke to them about how soon does the process start, and they said it depends primarily on Health Insurance. Some insurers take up to 28 days to approve the procedure, and Emory calls them daily to get the results.

They said my health insurer is the most popular for their current clients, and they take 7 to 14 days to get approval. So I asked, can we start that process sooner? So I was put on hold, and the answer is yes if the doctor agrees.

So this afternoon I was asked to start filling out paperwork to authorize Emory to request medical records from everyone I have seen so far. So I think the doctor said yes, so hopefully I'm 7 days ahead of schedule.

After approval then I have to get prepped. That requires SpaceOAR to be put in me: https://prostatecancernewstoday.com/spaceoar/ . During this procedure markers are also put in my prostate to make sure they line me up properly before they zap me. I call them crosshairs. And then I get my custom form fitted seat. Once all this is done, then another 14 days and I'm starting treatment. I've been told that on average people get 28 treatments. We will see what they dial up for me.

Monday, September 9, 2019

My escape

Sleeping and driving have been the most mentally taxing times for me. That is when my mind has been the most active, without outside stimulus, even with the windows down and the music blaring while driving.

For me my escape has been golf with friends, and it has been friendly competition golf on the weekends. A psychiatrist would better analyze what is going on. I'm just a patient who has experienced a resurgence in my golf.

Since I was diagnosed this is what I have shot.

H9/7/196975.1/140-4.9Hermitage Country Club Sabot C
H8/31/197172.5/137-1.2Hermitage Country Club Sabot C
H8/24/197472.5/1371.2Hermitage Country Club Sabot C
H8/17/197072.5/137-2.1Hermitage Country Club Sabot C
H8/11/197772.5/1373.7Hermitage Country Club Sabot C
A8/7/197973.9/1483.9Kiawah Island Golf Resort Ocea
A8/4/197070.5/133-0.4Kiawah Island Golf Resort Ospr

Our Member-Member tourney is around the corner and I dropped out after my diagnosis, but as Club Pro Guy would say I am trending in the wrong direction. I am not managing my handicap properly.

I have also started riding in a cart. Spending more quality time with my playing partners, where I used to walk and you could have a lot of alone time during the round walking, I'm trying to avoid that now.

I'm going to see if there are studies out there, where people started to excel in some of their pursuits in similar situations. Lance Armstrong comes to mind (did he use performance enhancers? yes, but most were). It still takes the mental fortitude be successful, that many times, no matter what you are taking.

Mario Lemieux is someone else.

Sleep is getting better

The first six weeks after I first learned of an elevated PSA and after my diagnosis I was probably getting 3 to 4 hours of sleep. The last three weeks I can say I'm sleeping much better. I've had a few nights were I was getting a solid 7 1/2 hours.

The nights I sleep the best are the days a I get a work out in. With all the appointments, the lack of sleep, the vacation, the travel, my workout schedule has suffered. It has been sporadic at best. Now that the school year is back in session, my masters swimming group is back in the water on a regular schedule I look forward to having some more normalcy with better sleep.

But wait, there is more

So I arrive at my MRI appointment at 9:05 (was supposed to be there at 9:15, I blame playing sports as anxiety on trying to never be late for an appointment. I know it drives my kids and wife crazy).

Last name please...what do you mean, you do not have my chart, okay, come around the desk. Um yeah your appointment was cancelled yesterday. I know that, and I pulled out my phone, and I was like, yes and look at 5:21 someone called from this number and said it was back on. Do you know the nurse who called? Nope.

So all the issues I had the last two days I thought were behind me (potential pun coming). You see before an multiparametric MRI you have to stop eating 4 hours before the procedure and only have clear liquids (liquids you can read a newspaper through). and 3 hours before you have to use an enema (see issues behind me.. get it). So imagine being hangry, full of clear liquid with a cancerous prostate, and recently enemanized (new word that I created). So um, yeah, I want to be upset because I'm hungry, but I need to pee every couple of minutes, and don't get me started if I feel like I have to fart.

Okay, went back to the waiting room. 15 minutes later and another nurse came in and they spoke. We are going to get you taken care of. You will be pushed back a little, I'm like, not a problem.

So 45 minutes late I get my MRI, 40 minutes of electronic jack hammering as you lay still in a tight fitting tube. The first 30 minutes were great, you do get head phones and music, but I couldn't hear a lyric. For anyone who has been floating you know the joys of the floating meditation. Well that's were I went, focused on breathing. It went smoothly. The last 10 minutes they pumped in some dye. Kind of a cooling heating feeling (icy hot patch) on my arm, then I can taste the pole from a Christmas Story for a minute or two.

Then the only song I could hear at the end, Gun's and Rose's version of Knocking on Heavens door.

I was in the car by 11:20 and quick stop at home, then off to the golf course.

Appeal Succesful

Thursday Sept 5th around 2:30 I was denied my MRI by my Health Insurer. So on Thursday I was on the phone with my healthcare agent, who said, get the doctor to do a peer to peer with the company, my heath insurer uses to deny claims (yep, they can't do it themselves so they pay another company to deny coverage for them).

So I made two calls to my doctor letting them know that family history needs to be discussed during the peer to peer.

Friday AM, no word yet. I was worried, because I was still scheduled for the MRI, but the health insurer was not going to pay. So at 8:15 I'm back on the phone with the doctor, apparently he was in an educational meeting. So I then called my agent again, he was going to start up work up a case, but said, he really doesn't have much power and not to expect anything by the end of the day. I called the MRI location at 9:00 (more than 24 hours ahead of appointment). They gave me until 10:00 PM to cancel.

As you can imagine, all morning the anxiety began to build. Eventually at 2:45 the MRI location called and said they were canceling my MRI. What the... I thought I had until 10:00. So back on the phone with the doctors office, yadda yadda yadda, they are canceling. The nurse was helpful, put me on hold to see what was causing the delay. The nurse spoke with the doctor and the doctors resident, they were back on it. So more waiting. At 5:02 I called the doctor, no one picked up. Yeah, I was not happy. Just slumped over, loss of appetite sort of feeling. I got in the car and started driving home. I put the windows down and tried to turn the music up too loud as I was driving through the fan. I made my usual turn onto grove and the phone range at 5:18. Hello Mr. Holsten, this is the doctor, I'm doing my residency with your doctor, I just got off the phone with the company that your health insurer uses to deny claims. After speaking with them, you are now approved... something something something, you are a miracle woman, thank you. 5:21 the MRI location called to let me know I'm back on the schedule.

Happy days are here again.

Thursday, September 5, 2019

Denied!

From what I have read, this is normal.

So, my MRI was set up for this weekend Sept 7th. The go between (third party) that gets the requests from the doctors, reviewed my numbers and said I did not meet the criteria for the procedure. They did this on the 3rd, and notified me on the 5th, as well as notified my doctor via fax.

They stated my numbers were too low for them to approve a procedure. So now my doctor has to go back and state I have a family history.

So a company, that I am not a customer of, runs blocker between my doctor and them, runs blocker between me. Takes all power away from me to appeal.

Step one, call my health insurance agent.
Step two, call my doctor, -> Doctor is looking for the fax.

So back into attack mode.

Wednesday, September 4, 2019

Supposed to have had surgery yesterday

The day came and went, what was scheduled to be my surgery date. Assuming everything had gone well I'd be at home now, post surgery with my catheter and who knows what medication. I would be returning to the doctor next Tuesday, have a void test, that is see if I could empty my bladder. If I could then I would return home without the catheter. I'd be on all sorts of medication. Probably very uncomfortable, and unable to help anyone with anything. I've had enough surgeries to know that there is a road to recovery, that there is a silver lining the next day. It was good to know that tomorrow I would be one step closer than today.

Sleep is still an issue. Amazing how late I can stay up just going over everything, every step, whether it is work or life, and then wake up too early to start thinking again. I'm hoping regular exercise will help with the sleep. The last week and a half have been quite busy with no exercise. Also the kids are back in school and the schedule seems to be getting a little more regular.

Finished my pre MRI consult today. 40 minutes in a tube with loud banging. That about sums up an MRI. Watch this be the time when I fall asleep. Jerking around like I'm trying to do a breastroke practice in my sleep.

Tuesday, September 3, 2019

Met my third Radiation Oncologist and I said pushy

Friday before labor day and I met with another Radiation Oncologist. And wow was he awesome. For over an hour and a half we talked. He wanted to know what I had learned so far, so this was not a lecture. We went through every procedure, past and present, who I was looking at. We covered a lot of ground, and on more than one occasion he stated he thought I was doing the right thing, at 47, going the proton route, even though he does not use that technology. At no time did I feel like I was a number to him, I was a patient, and he was able to give me all the time I needed.

So I learned a new procedure. He does high dose brachy therapy. An outpatient procedure with higher radiation seeds, over two treatments. It is still an invasive procedure with needles (catheters) inserted in your prostate, with computer calculations done by location to determine how long the seeds remain in your prostate. Procedure takes about four hours, you are sedated, and most people are back at work the next day, feeling as though they got a few shots the day before. He is currently performing this procedure for people 50 and over.

And I stayed pushy, he helped me schedule an MRI for the following weekend, so I will not have to make a trip to Atlanta to get it done, and I don't have to wait six weeks.

Stay pushy my friends

Trying to go through my urologist to get an MRI, I was pushed out 6 weeks, then another 10 days before I meet with the doctor to go over the results, that's going to get me into mid October before I can start meeting with Emory to start.

So I reached out to Emory, they started working on getting me a time the Saturday after Labor Day, so 9 days later. 

Then I reached out to my Primary Care physician because he had to recommend the MRI down at Emory, I also had him reach out to my urologist too. 

What I am learning from this process is you need to be vigilant. It's your body, there are other options. This is not the DMV.