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| My Maid of Honor, Amber Hepler, My Bride'smaid, Michelle Stueve (also my sister-in-law) And me at my bridal shower in Aug 2015 |
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| My bestie, Amber Helper and I |
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| My brother, Brian and his youngest child, Annabelle. Isn't she cute!!?!! |
Lenalidomide. This medication is an oral cancer drug, but it is highly government regulated due to birth defects that were caused by it in pregnant women back in the 1950's. Anyways, they were calling to let me know that the medication was approved for me by my insurance. She asked me if anyone had talked to me about the cost of the medication, I told her that I had been told during a doctors appointment that it was $1400 a month (which is actually a 21 day supply, you take it 21 days and are off for 7 days, and then repeat). She said that I was given the wrong estimate, that the 21 day cost for Revlimid is actually $14,000. That's right, get back up into your chair, don't worry I will wait a minute........I did the same thing, she said $14,000 and I promise you my heart skipped a beat, all the air in my lungs went out, and I fell out of my chair. She went on to say that I am lucky because I have insurance, so I immediately feel better because I'm thinking, "oh well good, maybe insurance is going to help substantially".....hahahaha. She went on to say, with insurance covering it your cost will only be $3,282 a month for 21 pills. I literally laughed, out loud, directly into the phone, for a minute! I mean, how could anyone EVER afford ANYTHING even remotely close to that? I mean if it is between me being treated by paying that amount or dying, I guess we know who's funeral you will all be at next cause crap, that is impossible. I don't even make that a month and I have a pretty good job for a 33 year old. She then went on to say that I can get financial assistance from the multiple myeloma foundation, which I greatly appreciate, but unless I can get like all but $100 covered, it just isn't something I can afford. Needless to say, all of this information was a little overwhelming, discouraging, and mind blowing quite frankly. The sad thing is, what choice do people have? It's either take this drug or your cancer gets worse.....I don't know what I am going to do. For now, I am going to continue with the plans Jason and I have made, which is to move back to Kansas City into my Mom and Step-Dad's house, continue to work with KU Med to try to get into a clinical trial, and file for social security disability and Medicaid. I hope it all works out, I mean what other option is there other than for it to work out?  |
| 2nd best night ever, the night before our wedding! |
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| Our Ruby |
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| Our Ruby again. |
Today, I am grateful for our puppy, our fur-baby, Ruby. Every morning when I wake up she is there laying right by me. She loves to cuddle, and she loves Jason and I so much! I am so thankful that we found her and were able to rescue her! I am also grateful for Kerry Hepler, she is helping me with getting all the information together that is needed for the clinical trial at KU Med and she is helping me with getting in the specialist there to get the best care possible. When I talk to her she doesn't treat me like a patient, from the first conversation I had with her I felt like I was her friend. She is working very hard for me and advocating for me and I appreciate that more than I can say. It must be something in the name, it can't be a coincidence that my best friends last name is Hepler (Yes, I am talking about you Amber Hepler, my sista since 7th grade)!
This concludes today's post, I am going home now to rest, super tired, super weak in my arms, and lots of back pain today. Much love to you all, thank you for the support, and as always, #ADVOCATEFORYOURHEALTH
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