With the surgical removal of my tumorous colon, the construction and healing of my ileostomy and the slow but steady healing of the old opening on my bottom, I have been thrust into the world of Treatment.
For me treatment consists of radiation and chemotherapy.
Being that I am nearly two months past my surgery, I had hoped to return to work - money gets tight when you are not working - and in this day and age and economy - we have no bankroll to live off of. Poor planning on our part. After all, who PLANS for cancer? For major surgery? For weeks and weeks off of work?
In my case I am happy that I have an employer that is holding my position until I am healthy enough to return. I know many people who, faced with this similar situation, have not been so fortunate. Some penny-pincher in an office gets wind of 'catastophic illness' and all of a sudden they find themselves scooted out the door. That is why I recommend waiting until a week before ANY surgery to inform your employer, and only give them the most minimal information - nothing they could conceivably use against you.
So, feeling better, but yet still hindered by my wound vac, I met with my radiation oncologist who outlined the plan. And, it sucks. For my case I have to have not one, but two treatments per day! And, being a 'business' their hours parallel my regular job and there needs to be a minimum of six hours between each treatment... I am scheduled at 9 am and 3 pm, Monday through Friday, for 3 weeks. Great, that means if I am lucky I would get a work-window of about 4 hours a day. I headed to my employer to discuss my chances of getting back to work. In short, the answer was no. While they are happy to see me feeling better, they don't want me returning on a part-time basis. Crap. Three more weeks with no work, means at least five more weeks without a paycheck. Hmmmm, maybe I can sell a kidney on e-bay...
Prepping for radiation involved more tests, more waiting rooms, more waiting in general so that the nuclear techs can get everything ready to go. At the same time the nukers were getting me set, I was meeting with my oncologist to discuss chemotherapy. It seems things have changed from the last time I was treated, nearly twenty years ago.
This battle will begin with a different approach to chemotherapy treatment as part of the 1-2 punch to eliminate any cancer that may be floating around my system. This time I take pills at the same time as radiation. The radiation is 'targeted' to the area of concern (near where they removed the tumorous part of the colon) and the chemotherapy is more like a commando team, designed to float around my system and knock off any wayward Cancer cells that may be floating around my body, trying to find a new place to set up shop.
I must pause for a moment to talk about the economics of treatment. Because to those around the patient; spouses, friends, caregivers, this is often a part of the experience that is overlooked as people worry about outcomes, side effects, long term survival - seemingly the most important things to be worrying about at this time. As if you didn't know, fighting Cancer is serious BUSINESS. Let me try to give you an idea.
A little research and digging on the web shows that the pre-surgical testing and diagnosis was around $3000. The average cost of my surgery - a total proctocolectomy - is about $50,000 +-. This cost includes both the cost of surgery and post surgical hospital stay. Coming home I estimate that the three weeks of in home nursing care as I adjusted to the wound vac and learning to deal with my ilieostomy adds another $3000. Cost to my family - travel, hotel, food, etc. about another $2000. Monthly cost of 'durable-medical equipment' - tanks for my wound vac and associated supplies - $1500 (3 months so far), pouches, mounting wafers and associated supplies for my ileostomy $1000 (3 months so far).
Keeping track? To this point roughly $60,500 of cost just to get me to the point where I can BEGIN the process of actual TREATMENT for the Cancer. Now, it is true that insurance has covered the biggest chunks of this cost so far, but I have nightmares thinking of how people who are not as fortunate as I am to have both a job (waiting for me) and an employer that provides medical benefits. What do these people DO!!! To be sure the 'uncovered expenses' have been very difficult for us to absorb, especially since I have been out of work now going on two months (about $4000 lost income). Were it not for the ability of my wife to turn to her 401K for a loan, and the gifts of money from friends and family, things would be worse than they are. But, unfortunately the picture does not get much brighter...on to treatment...
All righty then...on to the second part of this battle... Treatment.... Since I am already sitting on a big pile of bills that will be next to impossible to pay --- I tell the bill collectors just that... "Hey, look. If I am DEAD you get NOTHING! If you allow me to be treated, and get healthy I can get back to work and send you SOMETHING!" Let's look at the associated costs of the dual treatment I am getting - radiation and chemotherapy.
A little more digging on the web allowed me to discover that my 15 days of radiation therapy averages about $30,000 -- and that is in 2005 dollars, I am guessing it may be closer to $50,000 today. This time around too I have to go to treatment twice a day --- which keeps me from working for 3 MORE weeks --- read another loss of about $1800 in income --- just for fun, given gas prices throw in a tank of gas a week - another $150 or so out the window.
Now for the fun part... This time around my chemotherapy treatment will come in two parts... the first will be in pill form and last 15 days -- taken at the same time as radiation, because, as I have mentioned, the two seem to be more effective when used together. When I met with my oncologist I found out that I had to call the 'special-pharmacy' which will handle delivering my pills to my home -- here is where it gets interesting, when we look at costs... When I made the call, I spoke with the very helpful receptionist assigned to me and discovered the following... the CO-PAY for my medication - two types of pills - same medicine - 500 mg tablets and 100 mg tablets, was $70...for BOTH! I am thinking SWEET, what a deal, right? Then he dropped the bomb on me; "Mr. Lightfoot, you will want to be sure to be at home when the medication is delivered, because if it comes up 'missing' for some reason you will be responsible for the entire cost of the medication, should it need to b replaced." What is the cost? wait for it....wait for it..... are you sitting down.... $2700 !!!! I about crapped my pants.... Oh, wait. I can't do that anymore... Anyhow, doing a little math here is the cost of the pills: 6 x 500mg, and 2 x 100mg per day...for 15 days... that is a total of 120 pills.... which works out to $22.50 per pill!!!
After completing this 15 day process, I get a break.... 6 weeks with no zapping, no pills, only one or two 'routine' office visits to monitor blood counts and such, then I have to return for MORE treatment... Figuring out the cost of this phase is a little more difficult, because I don't have the details, but I think it involves, BOTH some IV medication and some more pills taken over a 4 month treatment, so I will wait until I have more information before I hazard a guess.
Once I complete this phase of treatment I will be 'evaluated' - read MORE TESTS, more BIOPSIES, to see if I have beaten - kept at bay, the cancer... That will put me into October....maybe by by birthday on the 4th I will be 'done-enough' to declare me 'cancer-free' once again.
In the end, should I survive this process -- both physically AND economically, I will be both suprised and happy. I just hope it will all work out... I'd like to say I trust in 'God' to take care of it, but all I CAN do is trust in my medical team, my family and my body to tolerate not only the physical treatments but the psychological stress and strain that goes along with the entire process...
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