CTCA 7th Trip

Well, after 7 months of chemo, things have become fairly routine.

I returned to CTCA on Tuesday after my 3 week break from chemo. Yesterday, I saw Dr Jag to go over the results of my CT/PET Scan. I’m happy to report that my cancer is now about 90% dormant. My tumor markers are down to 57. We are winning this fight and kicking cancer’s butt!

There was a little set back this week though. I spent 3 weeks I had off having some pretty bad pain in my side. The pain was just like I had before I was diagnosed, except it is in my left side instead of right. Today I found out what is causing the pain. My spleen is enlarged. At first Dr. Jag thought it may be ruptured, but after talking to the radiologist and going back over my CT scans he determined it was not. Dr Jag came back into the room and explained that my spleen will have to be removed. I don’t know what caused it. I think I sort of “zoned out” during that part of the conversation. All I heard was surgery. I think he said chemo was the culprit.

I will have to be off of chemo for a while longer before they can do surgery. So the good news in this is that I will be off of chemo for about another 6 weeks.

I come back on April 11th to have my spleen taken out. That should be a lot of fun. Until then I will be enjoying my time off from chemo.

The Cost of Cancer

As promised, I wanted to do a “report” covering “The Cost of Cancer”. Let me start by saying I believe that cancer is the most expensive disease out there. I have not researched the topic that much so I’m just guessing here.

I was always taught that life was precious and priceless. Let me tell you, hospitals have figured out a way to put a price on it, for sure. The figures below are from my actual bills. When I was first diagnosed with cancer in August 2010 it took the entire month of July to get that diagnoses. I didn’t really keep up with the cost then. This is because we were so distraught about getting a cancer diagnoses, the cost didn’t matter. That was of course until it was time to start paying the bills.

When I started chemotherapy at Vanderbilt each treatment ran a little over $10,000.00 every other week. Unfortunately the treatments weren’t helping all that much. My tumor markers were going up instead of down. They didn’t put me on one chemo drug that I needed because I was either pre-op, post-op or they were worried about my blood pressure.

After the phone call from Vanderbilt saying they had done all they could do etc etc. I called Cancer Treatment Centers of America. If you have read any of my blog, you know how I feel about them. I’ll go ahead and say it again here. They are the best cancer treatment option available.....period. Of course that’s my opinion, and the opinion of every patient I’ve spoken with.

So going back to the cost here. My first visit to CTCA was for an evaluation. I spent about 8 days there. When I got the bill, I thought there was some sort of mistake. It was for $83,000.00. This does not include the out of pocket expenses. I have to pay for my room, naturopathic medicines and food out of pocket as they occur.

When I got the next bill it was for $87,000.00. Looking at the bill I found that one of my chemo drugs is $57,000.00 alone. I get 4 chemo drugs. If you are keeping count, that’s $170,000.00 per month for treatment. Again, I’m not sure how that compares to other diseases or even trauma, but I know it has to be quite high on the list.

Yes, I’m one of the lucky ones. My insurance covers 90%. I know there are a lot of people that are not able to go to CTCA because their insurance will not allow it. I feel deeply sorry for them. Going back to my insurance paying 90%; That still leaves about $17,000.00 per month out of pocket not including what insurance does not cover.

So I want to move on from the “Cost of Cancer” to how to get help paying for it. We have checked into all (I think) of the non-profits “helping” with cancer. I don’t want to introduce negativity into my blog. But. All but a couple of organizations do not help cancer patients. yes, you read that right. The organizations raise money for cancer research. We are talking about over a billion dollars per year raised just for research. This leads me to ask; If a large portion of cancer research is funded via “donations” and non-profits, then why are chemo drugs so expensive? The drug companies say the cost of a drug is to pay for research. Something just does not add up there, if you ask me. But I have to stop talking about it, here because it just upsets me.

So on a positive note, I’m doing a bit of research on starting a non-profit just to help cancer patients pay for their treatment. None of the money would go to research. If you have any information or would like to help in some way, please contact me. I don’t want to see a cancer patient turned away from treatment, or have worry about paying rent, mortgage, utilities etc, or get chemo. Again, if you can help in some way please contact me. I know for a fact we are going to need legal help. Once we get this up and going we are going to need to get the word out to potential donors and recipients.

I really want to “give back” or “Pay it forward” or whatever it’s called. I have several projects that I want to see come to life and that is one of them. I’ve already started my other “cancer project”. It includes working with my oncologist to answer some of the questions people have about cancer. It’s called “Dr Jag’s Cancer Answers” and you can see what we are doing here.

As always, thank you for all of your support and prayers. Everything is looking good for me right now so the prayers are working. If you have any questions or comments you can leave them here or e-mail me directly.

Well, first I must apologize for not giving a mid-week update like I said. One problem is that when I’m at home, I try not to think about cancer that much. It doesn’t work most of the time but worth a shot anyway. I’m going to try and post more often. I probably put too much information in each post anyway. Maybe I can break them up into smaller post

So this is my 6th trip to CTCA. Wow! It does not seem like I’ve been coming here that long. I’m writing this part of the blog before I have been in to see Dr. Jag, so I really don’t have any new information right now.

So let me tell you about my journey here. I have been traveling back and forth on Southwest since the second time. It seems that most of the planes I get on have mechanical problems of some kind. It can be anything from “a light out” to having to swap out planes. Last night was no exception. The first flight was unremarkable. We flew from Nashville to St. Louis where I changed planes to continue on to Tulsa. When they shut the door, everyone started smelling something burning. It really wasn’t a good sign. They quickly opened the door and started checking things out. After a short time, the captain picked up the intercom and said, “I just wanted to let everyone know what’s going on. I think the air system sucked up some plastic or something and I think that’s what we all smelled burning. I’ve called a mechanic to check it out.” The mechanic came down looked around for a couple of minutes. I guess he didn’t find anything, so we were cleared to take off in that same plane.

Well, I’m getting ready to go for my oncology appointment so I will post more on this visit when I get back.

So I just got back from seeing Dr. Jag. The good news is that my tumor markers are down to 64 (from 87). It’s not as much as we were expecting, but the numbers are down. I’m thankful for that. Dr Jag is increasing my chemo dose this time to kill these pesky little boogers. I’m not responding as well to the new chemo as I was, which is the reason for the increase. I don’t really like being down here....but; that means the side-effects are going to be increased as well. To quote Dr. Jag, “It is going to be fun for you.” Which I believe, because the new chemo drug hasn’t been too much fun so far.

I do get time off from chemo, but it’s not what I was expecting. I was thinking at least a month or two. I’m only getting 3 weeks off. I shouldn’t complain. It is three weeks after all. Then when I come back on March 15, I’ll have a CT scan then a PET Scan. Then on March 17th I start back on chemo.

Dr Jag did however say we were going to do 6 more cycles of chemo then probably HAVE to take a break. My blood is quite toxic at the moment. Plus my red and white blood cell and platelet counts are pretty low. I get a couple of shots when I finish chemo to make my body produce more red and white blood cells and platelets. The shots are working which allows me to continue getting chemo.