Here is some of my exciting news! Because of the stellar work of my benefit committee, Dakota Medical Foundation has chosen me to be part of their Lend A Hand Initiative. Dakota Medical Foundation, otherwise known as DMF, will match funds raised by our benefit up to 5,000 dollars!
Even though many people attended and gave generously at the first benefit we did, many other people did not have a chance to attend and we hadn't been approved yet by DMF. So the committee came up with this fun idea to host a golf tournament and try to raise funds and receive the matching $5,000. All of the details are posted in my sidebar if you follow the link! Stay tuned for more fun details of the big day!
But in case you've been wondering, let me give you some context of what the reality is financially for cancer patients- regardless of their insurance. One of the drugs I am receiving through the study is Trastuzumab, or Herceptin (along with a chemo agent, known together as TDM1.) As long as I am both tolerating the treatment and having no "progression" of my tumors, I will be allowed to receive my chemo drugs, scans, tests, etc, at no cost to me or my insurance. However, if I were to show progression, or no longer tolerate the drug, I would be taken off TDM1. At some point, most people on TDM1 will show resistance to it.
At that point, I could continue with standard Herceptin and other standard chemo agents, with a catch.
Wiki provided this helpful info...
Trastuzumab is also controversial because of its cost, as much as $100,000 per year, and while certain private insurance companies in the U.S. and government health care systems in Canada, the U.K. and elsewhere have refused to pay for trastuzumab for certain patients, some companies have since accepted trastuzumab treatment as a covered preventative treatment.
Just how much will my insurance cover, if it does at all? Its one of the many unknowns i face, and will eventually have to find the answer to. Many insurances also limit the number of scans you are allowed in a year. With the average PET scan costing well over 5,000 dollars this makes sense. But to a cancer patient who can only know what their cancer is doing based on what is seen on this scan, once a year isn't nearly often enough.
Hence the burden faced my most cancer patients. Add in the fact that I have been told to expect I will never be without treatment of some sort. Because the cancer has metastasized, the cells are everywhere within me and we will never know where they may show up next. I try not to think about that. And you all enable me to do that more than you know.
My family and I continue to be overwhelmed with all that is being done to ease our burden. I don't sit with the financial or physical weight of fighting this disease on my shoulders because so many of you continue to step up and give so generously. It all matters to us. Whether its a meal, or card, or your favorite cd, or an email of encouragement, or a golf benefit, it all counts equally to us.
I keep telling Dr. Panwalkar, I feel lucky... I think he may just be starting to believe me.
In other news...
Blueline hockey camp is officially over for the year! The boys loved their camp experience and the highlight is when Matt Cullen, from the Minnesota Wild and Mark Cullen, of the Florida Panthers- AHL Rochester Americans, come home for the summer and show up for a day to sign autographs. Colton rallied from a doubled=over stomach ache to dress in his goalie gear for his last session, since Matt was coming on the ice with them. Colton only asked one thing of Matt "no slapshots on me, please." Matt laughed and said he had a deal... but I happen to know his wrist shot is no joke either!
Matt's wife Bridget asked me if I was "sick" of being at the rink... I said absolutely... NOT. All day I watched as young player after player lit up when Matt and Mark would talk to them and encourage them. There were beaming faces everywhere and the joy was palpable.
Left to Right: Matt Cullen, Colton, Mark Cullen
How wonderful to hear about the benefit, Vicky! YOu are so right --- most people have no idea how much it all costs. I still have the summary sheets sent to me of the costs of chemo and radiation treatments, scans, etc. I keep them as a reminder of the vastness of God's gracious provisions for me. And yes, it's true ---- it's for a lifetime. For two and a half years, the Arimidex I take daily cost over $400 a month. Yesterday, I was told I have to switch to the generic, as they will no longer cover the cost. I leaves me feeling a little nervous, as I've heard it is far inferior. And year is a long time to wonder between PET scans, isn't it? Vicky, we do our best, we do what we can. And we leave the rest to our Lord who knows the end from the beginning. I can't tell you not to be anxious when I have anxious thoughts, too. But I can tell you that after you chew on them for a while, look up and know that He carries you and that underneath are the Everlasting Arms!
ReplyDeleteThat is so cool Vicky! And you are worth it!!!!!!!!!! Remember that anytime you feel too humbled by it all. You are most definitely worth it. :)
ReplyDeleteVicky, I started reading your blog after seeing your flyer on the Lend A Hand site. I am so proud of you. You are a wonderful person and beautiful writer. Keep fighting like a girl!!
ReplyDeleteWhat an awesome event!
ReplyDeleteAnd I pray for the day everyone, always, can get the medicine they need paid for by insurance.
This is fabulous news!!! I am so happy for you!
ReplyDeleteThat is an awesome pic of the Cullens!