I'm Annie Modesitt, and I have High grade b-cell lymphoma with MYC and Bcl-2 arrangements.
I started a go fund me, but things have changed since my original story [below], allow me to explain...
We WENT to Mayo to see about getting treatment for my High grade b-cell lymphoma with MYC and Bcl-2 arrangements, Mayo was interested in treating me, I THOUGHT we were covered with our insurance, and through the GoFundMe we were able to secure the funding for our hotel.
Then the day before everything was set to start with the chemo, we heard the words "Pre Auth" for the first time from the Mayo business office, and my heart sank.
We weren't covered. They covened some kind of special council of insurance people, and they turned us down. So back up to St. John's in Maplewood we went, and glad to be here.
Ironically, St. John's is giving me the exact same chemo that Mayo was going to give me, so the trip wasn't a total waste. I feel like it kick started St. John's to look at how fast moving my cancer is, and to treat it with the high dose chemo it merited.
But what about the money?
I've written to everyone who's donated offering to return the money which will now NOT be used for accommodation, but WILL be used to pay off the sizeable copays that are racking up each day. Some weeks our copays reach $1,000, most weeks it's around $250. The amount we've blown through so far is a bit insane. And we HAVE what is considered "Good" insurance.
So if you are moved to donate, thank you! But know that your donation will not be going to cover accommodation in Rochester, MN, but it WILL be used - every penny of it - for CoPays to our insurance to cover medical and medicine costs. Oh, those pricey, pricey meds...
Please share this with folks who you think may care, I am very grateful for each one of you.
Everyone said, "GO TO MAYO!" so I went.
And Mayo is interested in treating my High grade b-cell lymphoma with MYC and Bcl-2 arrangements. Which is PHENOMENALLY GREAT NEWS!
The not-so great news is that each month I'll have to spend 7-14 days in Rochester, MN getting chemo. The balance of the time I'll be up in St. Paul, healing from the chemo treatments, which are supposed to be quite strong.
There are NO rooms available in the 'free' lodgings associated with the Mayo clinic, no room at the hope lodges, etc. I can't stay in a private home because I'll have my caregiver with me, and I'll need a more sanitary space than someone's back bedroom.
The best I can do is rent a hotel room (hopefully with a kitchen, to cut down on costs) for a week or so every month, that seems the most economical way, and there ARE discounts for Mayo patients.
Right now, I'm psyched to be able to get treatment at Mayo, but unless I'm able to pay for a hotel and food, I won't be able to GET TREATMENT at Mayo.
Please give what feels comfortable to you. I am grateful for every person who wishes me well, and a separate fundraiser I've set up to help us cover non-covered medical expenses (copays, etc., which are sizeable)
I'm basing the amount of this fundraiser on 4 months of treatment. This is the minimum, I'll probably go on for more, and at that point I'll probably have to do this again.
Thank you. That's all I can really say is, "THANK YOU."