I started this blog because of cancer, and for the most part it has really been all about my treatment and experiences, but I wish that was not the case. I wish I had more I wanted to write about than just cancer. But, I guess until cancer is no longer the dominating subject of my day to day activities, I probably won’t have much else to write about.
I have not written in over a week so this post is a recap of what has been happening.
1. The Party – Sonya, Angela and my Mom pulled off an excellent party at Champps last Saturday. I honestly don’t know how many people were there, but that room was pretty full and I think everyone had a really good time winning prizes. I know for sure they had a good time buying tickets to “bid” on raffle items, and to compete for the silent auction items. Everyone who participated was far more generous than I had anticipated and we raised enough money to pay off the remaining medical and doctor bills from 2009, and get a good start on the bills for 2010. It is a tremendous relief for me to settle many of these very old and past due bills. I rarely answer my house phone anymore because at least 2 out of 3 calls are from someone wanting to know when this bill or that bill will be paid. Some of you may wonder why I have so many bills and be asking, “Doesn’t he have insurance?” And since a high proportion of this websites readers have contributed to my financial plight, I feel a responsibility to share some details about where your money is going.
We do have health insurance for our family. As you know, Angela and I are self employed. I love working for myself and wouldn’t want it any other way. However, there are a few disadvantages. One of them is that health insurance is not something that just happens automatically as a condition of our employment. We are our own Benefits Manager. The advantageous counter point to this, is that we have our choice of any plan in existence, not just the one or two plans and insurance providers offered by our company. For many years, we had a very traditional HMO plan, where we paid a monthly premium, had a network of providers and doctors to choose from, paid a $20 co-pay at each visit and had a very typical annual deductible. In September 2009, after yet another annual increase to the premium, I started shopping around for new plans and talking to a lot of people. The type of plan that was recommended by several people for self employed families was called a high deductible HSA. Under this type of plan, you trade a $500 or $1000 annual family deductible for a deductible in the 5 digit range, and in return, your monthly premium is lowered by hundreds of dollars. In our case, we went from a monthly premium of $445 for three people, to only $198.00. The theory behind the lowered premium is that an individual will take that money they save each month, and deposit it to an HSA, or Health Savings Account. This is a checking account you can open at almost any bank and it works just like a standard checking account with printed checks and a debit card. However, the only caveat is that you can only take money out to pay medical related expenses. The account works like an IRA, in which all deposits can be deducted from your taxable income…but, you cannot access the money without a steep IRS penalty, unless you are writing a check to a pharmacist, doctor, hospital, optometrist, etc. Over time, the balance in the HSA is theorized to build up to a high level and even if something catastrophic like a car accident or major illness occurs, you will have the money in the HSA (which can’t be used for anything else) to pay that $10,000 – $15,000 deductible. We were young, healthy, and had not incurred more than a few hundred dollars in healthcare expenses during any year of our life, so we signed up for this type of plan. Three months later, I was diagnosed with a disease that would eventually rack up close to $200,000 in healthcare expenses in it’s first year, and although the meter is still running on this year, I suspect that the final bill will for 2010 will run far above last years bill. So, the short version of the answer is…yes I have insurance, but I have a plan with a huge deductible which I have now maxed out two years in a row. And in all likelihood, I will max it out or come close to doing so for each of the next several years. After I am done with treatment I will still require 3-4 PET scans per year to monitor my cancer and those tests cost about $1500 – $2000 each, all of which will come out of my pocket. Obviously, this all comes on top of all the regular financial responsibilities that every family faces, mortgages, car payments, childcare, groceries, utilities, savings, etc. So, I thank each and every one of you who have contributed to my medical expenses. You have helped to shave a good portion of my debt away and in doing so, relieve much of my finance focused stress and anxiety.
2. Radiation – I have officially entered the radiation phase of my treatment. I started on Monday and have had three treatments so far. For those of you who get the email notices of my new blog posts early in the morning (if not, subscribe here), I will probably be lying in the Linear Accelerator on Thursday morning while you read this. I go in at 7:45 each morning and they strap my head to a long skinny table and line up the alignment beams with several marks all over my arms and torso. Then the staff exits the room and closes a HUGE leaded door (no joke, this door is over 12″ thick) and the machine starts moving around and radiating the Dirty Bastard. It only takes about a minute or two, and then the technicians come back in and release me. So far, I feel nothing. No pain, no side effects, no reaction at all. While the machine is buzzing, I do get this sensation that I can smell something burning, but I am pretty sure that is just my imagination. I am planning to make a little video of the experience if the technicians will let me.
The worst part of radiation so far is that I have learned that cancer patients from the Children’s Hospital at Emory (which is right next door to the Cancer Center), also get treated in the radiation oncology department. This has not been the case with any of my other treatments. I have never seen kids at my former oncologist in Duluth, or at Winship’s infusion center, or in the hospital. But they are in the radiation unit. I have seen a few little ones facing their own Dirty Bastard. One boy in particular is probably just a little older than Dominic and I see him there with his Dad. The boy has just the tiniest little bit of fuzz on his head, so he must be ahead of me in the treatment schedule. Like I said a few months ago, I named this disease the Dirty Bastard because it picks on little kids. Not fair.
3. Tour de France and Cancer Awareness – If you happened to watch any of the Tour de France you may have noticed or heard about the Nike Chalk-Bot. Nike has sponsored a device that writes personal messages on the roads over which the Tour de France riders travel. Anyone who was so inclined, could submit their message to the Livestrong group and some of them got printed. My friend Joe submitted one for me wishing me well in my fight, and that prompted me to create one of my own. Joe’s never got printed unfortunately, but I got a notice from Nike last week that mine got printed on July 19, on a road in southwestern France inside the Pyrenee’s National Park. I enjoyed watching the Tour this year and appreciate everything Lance Armstrong, Livestrong, Radio Shack and the Tour organizers have done during the course of the three weeks to raise awareness for the fight against cancer. If you didn’t catch the highlights, on the final day of the race, Lance and all of his 9 other team members wore a special jersey, each one with the number 28 on the back, referencing that there are 28 million people in the world currently living with cancer. The jerseys were not race approved and about 3 minutes into the start, the organizers made all the riders stop, and forced the entire team to change into their regular jerseys in the middle of the street. For anyone watching, I think this complication did a better job of bringing attention to their mission, than if the organizers had let them go, because it took several minutes to get jerseys to each of them and for them to organize their pinned on numbers and headsets. All the while, the TV announcers were just talking on and on about why they were wearing those un-approved jerseys in the first place. Good publicity stunt!
So, to wrap this up I will tell you all that I feel pretty good. I don’t feel the excessive weakness and fatigue I have in the previous weeks, so that must mean my body is rebuilding itself a little after having so many cells wiped out by the last chemo. The only effect I can still feel is the mixup of nerves in my tongue. I seem to be missing one particular taste sensation. Not sure if it is bitter, or sweet or maybe a combination, but something is still not quite right in there. But I am eating well anyway. I am going to take my bike out for a gentle ride tonight to try and get some exercise. It will be the first time I have ridden in weeks. I am more concerned about this ridiculous heat melting me, than I am about my body being weak. That’s why I will wait until about 7PM. I hope everyone has a great day.
