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."
We had some very disappointing news today, after we had thought we'd been approved by my health insurance for treatment at Mayo (which is a much stronger chemo than the drugs I would have been given up in St. Paul at Health East) we learned this morning, just hours before I was set to get my first Mayo Chemo Treatment, that I would NOT be covered if I went ahead.
Of course we are not financially able to foot the bill for this without insurance, so we will be returning to Health East for care under the original plan, R-EPOCH, and hope for the best outcome. It may mean a stem cell transplant at the end of the treatment, and if that happens then we'll deal with that then.
What this DOES mean is that I will NOT be staying in a hotel in Rochester, so I feel it is incumbent on me to offer to return the funds that you so generously donated to me to cover my hotel during my proposed Mayo visit.
Please let me know if you would like a refund, and I will work out the best way to get the money back to you. I am SO grateful and appreciative of your love and your generosity, I don't want to abuse that trust.
You can message me and let me know if you do want your funds returned, please know that I am grateful to you for your generosity, and I totally understand if you feel it would be best to have the money you donated returned!
Thank you so much for your good thoughts and kindness!
I'll be on a regime called CODOX=M/IVAC, which will be pretty rough and will also involve infusions of chemo right into my spine to fight the tumor(s) that have taken up residence there.
Lymphoma can be rough, and my own cancer is a strong and fast moving one. But I think I am stronger.
Dr. T seemed a bit hesitant at one point in our conversation, so I asked her what was up, when she'd been SO enthusiastic a few days earlier...
She said, "I'm concerned that the cost of staying in Rochester will be a real hardship to your family, and that makes me hesitate to put you under such a financial strain."
It's rare to have a doctor speak so frankly about the finances of recovery, and very refreshing.
I told her about the GoFundMe, I showed her all that you folks have done for me, and she was—if possible—even more thrilled than I had been. All of her hesitation was gone, she was once again very positive about her hopes for my recovery and chances of a CURE.
I extended my goal so that I now have funding for six months of accommodation, should I need it. We're not certain how long the chemo will go (it depends on how I react to the very strong chemo drugs.)
There's a chance that I won't be able to tolerate the drugs at all, we just won't know until I'm in the thick of it. However, there's no doubt that I am one of the luckiest folks I know. Seriously.
I have insurance, and I have a cancer that is actually treatable. Those are two amazing things, and it breaks my heart that anyone in our very rich nation has to go without good health insurance.
And because of you, I'm SET for six months of accommodation at the Mayo Clinic if I need that long, and that is an AMAZING thing to contemplate.
Once again, I can't thank you all enough for the love and support you've sent me through your messages and donations. I have EVERY intention of fighting this, no matter how hard it will be, and I feel that every one of you are there with me.
Without your support, there might not even BE an option to participate in the drug regime that is only available through the Mayo clinic right now. You are saving my life.
It's 5am in St. Paul and I cannot sleep.
I cannot sleep because - well - cancer.
WE MADE OUR GOAL!!!
At this point I am blown away. I cannot believe the love and support you have poured into my fundraiser, and I am very grateful. Look at that grateful face! Then look at Andy's face and be a little afraid. Then look back and me and consider whether those earrings really DO work with the hair...
I'm going to increase the goal on the assumption that my chemo may take more than 4 months (4 is the minimum, we won't know until we start how long it will take, but originally 24 weeks was proposed by my doctor, and that's what's in my mind as the total time span.)
So, if you wanted to ride along, please feel free to tell your friends and we can keep this going.
And now I will go to sleep and not worry—for perhaps the first time in many weeks—about how I will pay for lodging in Rochester.
When, a few weeks ago, I seemed to be foot-dragging about Mayo to many of you, THIS was my real reason for not getting so excited about Mayo. I was afraid that not being able to afford a hotel would wreck any plans that we made.
BUT NOW I AM EXCITED!
I feel so strong, and so ready to FIGHT THIS DAMN CANCER. And it is in NO small part due to each of you!