I Am Getting Very Tired...

...of this ridiculous game. This fight has been going on too long. Not the fight against Poindexter, that is a life-long struggle. I'm tired of this fight with the insurance company. Last Tuesday I saw my oncologist for a check-up and my monthly blood work. This was the week I was off of Revlimid, my week of rest. My blood counts, this time, were not optimal. I guess that helps explain why I have been so tired. My neutrophils, first line defense cells were barely 1,000. They should be 2,000. So we put off starting the next round of Revlimid until yesterday, to give my body a bit more time to recover. All chemotherapy is cumulative, so I wasn't surprised, but it didn't strike as the best news. The Doc said it was no big deal, but I have to wonder how much longer I can stay on Revlimid. I need the transplant! But, I digress. The doctor lowered the dose of the Revlimid to 15 mg. from 25, hoping this will keep Poindexter in check and help my blood counts as well. I waited for the call from the specialty pharmacy that supplies my Revlimid. They normally call soon after the doctor reorders the drug. They didn't call Wednesday, they didn't call Thursday, so Friday I called the Doctor's office. They assured me they had faxed in my order, so I figured the pharmacy would call soon. But, by Monday they had still not called, Monday, the day I was supposed to start taking Revlimid again. So first thing yesterday, I called the doctor's office. They contacted the pharmacy and were told the pharmacy was, for whatever reason waiting on an authorization from...the insurance company. To say the least I was not pleased. I started calling all of the insurance numbers I had, without success. I finally called my employer, and asked for help. Thankfully within in two hours I heard from the pharmacy setting up delivery of the drug. So here I sit on this snowy Tuesday morning, at home instead of at work where I am sure I am needed because of the weather, listening to Bach and waiting for UPS to bring my life support. I guess now I'm not fighting just for the transplant, but for any treatment at all. Or perhaps it was just a mix up. I really don't know. I suppose I'll find out next month, when we start the eleventh cycle of Revlimid. I'm getting very, very tired of this game...

Waiting almost patiently

Okay, I still haven't heard anything from the insurance company, or the doctor, and I'm doing my best to be patient. Patience is a virtue I doubt I will ever master. Yet here I am, waiting, and waiting, and waiting. I suppose going nuts and yelling and screaming would be counterproductive, so I'll wait, for now. I'm holding out so far, but my patience does have limits.
Deacon John
Fourth Sunday in Ordinary Time
Jan. 31, 2010

One of These Days

OK, the Dr. in Chicago did get back to us, and the insurance company, ever-vigilant as they are, is asking for MORE information. The emphasis on more being the Doc's, not mine. I get the feeling he is getting to the point of exasperation with these people. I, too, am beginning to get very tired of this game. A game perhaps for the insurance company,but a game with deadly serious consequences for me. At this rate I have no idea when or if the transplant will ever occur. Last week I started my ninth cycle of Revlimid. My oncologist here in Louisville said I could remain on this drug for about one year. I can only hope that something happens in the next three months, before the Revlimid stops working, or that it continues working beyond one year. But there has to be a bright side to this, right? At least we got through the holidays without spending them in the hospital. At the glacial pace things are moving it will be summer before the transplant, so we'll miss winter in Chicago and my donor sister will be off work, so she won't miss any time. All I can do at this point is trust that things will work out for the best. All we can do is keep praying, and try not to be exasperated or angry. TRY.
Deacon John
Monday of the Second Week in Ordinary Time
Jan. 18, 2010

Maybe the Letters Helped

Just before Christmas the Nurse Manager from the insurance company called and asked me, "When is the transplant scheduled to be done?' After getting over being stunned I said it has not been scheduled. She procedeed to inform me that my dr. in Chicago had submitted a new protocol that might be acceptable. I thought, if it only might be approved, why would anything be scheduled? She then said that in her research the new protocol may still involve a clinical trial. At this point I was wondering why she called at all. We e-mailed the tranplant team in Chicago and found they had submitted a new protocol, and we were asked to e-mail again in 2 weeks. We did e-mail again and are waiting for a reply from Chicago. Maybe something is about to happen, maybe. It does seem that everytime I write to the insurance company, I get a call from the Nurse. I still haven't gotten the documents I asked for, however. Maybe if I write again more will happen, or maybe not. Oh well, it does seem we are making progress.
Deacon John
Christmas Weekday
Jan. 9, 2010
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

2 down...

and I don't know how many to go. Yesterday, Dec. 7, marked the two year anniversary of my Multiple Myeloma diagnosis. It has indeed been an eventful two years. Since my diagnosis I have undergone several rounds of chemotherapy, an autologous stem cell transplant, remission and relapse, and more chemotherapy. Now I find myself in a literal life and death struggle with my insurance provider.
My best option for further treatment is an allogeneic stem cell transplant, with stem cells provided by my younger sister.
I know the statistics, I've read the literature, I understand the life expectancy of a person with this disease. Even knowing all of this, even in the face of the insurance company's intransigence, I still have hope, I still believe. I believe that I will be fine no matter what happens. I heard a great sermon this morning about unloading all of your baggage by giving it to God. I have tried over these past two years, not always succesfully, to give the baggage that is MM to God. Today I renew that commitment. I have been blessed with a wonderful wife, a great family, and better friends than I deserve, all of whom have been on this road with me. When I was diagnosed, I wasn't sure I would be around to write this. Now I look forward to posting on the 20th anniversary of this date, and the 30th. Will I be able to do that? I don't know, but I do know that with God's help and the support of my family, my friends, and all of you, the journey, how ever long, will be a great ride.
Deacon John
The Solemnity of the Immaculate Conception
Dec. 8, 2009
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Appalling Appealing

Ok, I have been as patient as I can, waiting for my insurance company to reply to my first letter appealing the denial of my treatment. Here's a copy of my latest letter, the last nice letter I plan to send:
On Nov. 2, I mailed a letter appealing your denial of my request for treatment of Multiple Myeloma using an allogenic stem cell transplant. I asked at that time that certain documents be sent to me, documents that your denial letter stated I was entitled to see. I also asked that a reason for the denial, other than the vague ones given, be presented to me. I have yet to hear from you, almost four weeks after my request. Hopefully this letter is moot and the requested documents are on their way to me. Should they not be forthcoming, I hope this letter will serve as a reminder that I have requested this information and I do expect to receive it. It is my sincere hope that the next time I correspond with you it will be in response to the requested information. I also wish to remind you to send this information to my doctor as well, letter appealing their denial of my treatment.
I await your reply.
I think I have been patient enough. I have had a couple of calls from the nurse case manager, urging me to contact my doctor and press him to change the treatment plan to one they can approve. Since I did not go to medical school, I think I'll let my doctor make treatment decisions. I'll give the insurance company a couple of more weeks before I write again. The next time I'll not be nearly as nice, and the letter may have a few more adresees.
Deacon John
The Second Sunday in Advent
Dec. 6, 2009
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

It's In The Mail...Almost

I guess I finally calmed down enough to write an appeal letter to my health insurance provider. I tried to be as nice and as calm as I could, and I think I succeeded too well. I may have been too nice. Here's the letter:
To Whom It May Concern:
I am writing to appeal the denial of my appeal of your original denial of payment for treatment of Multiple Myeloma using an allogeneic stem cell transplant. Your letter states that the denial is based on the treatment being a phase II clinical trial, trial number NCT00683946, despite being assured by my oncologist that this treatment is not a part of this study. Your letter states that a photocopy of the Plan provision on which this denial is based is enclosed with this letter. No such document accompanied the letter I received. I request that you provide me with this document.
The reason for denial remains vague, at least to me. Is it the procedure itself, the drugs involved, one of the drugs, all of the drugs, some combination of the drugs? Is the denial based on the allogeneic stem cell transplant? Please enlighten me as to the reason for the denial other than the claim that the treatment is experimental.
I also request that you send me copies of all relevant documents and information on which this decision was based. I also request that this information, if it has not already been given, be provided to my doctor,
I await your response.

I omitted my doc.'s name and address, for his privacy. I also omitted the name and address of my insurance company, only because I am holding back should I need to use it later. Believe me, if it will help I will make them known. This fight has just begun and I am as stubborn a human being as ever lived. I'm fighting for my life and I will fight as hard as I must, using whatever I must to get justice. After all, am I not paying them? I thought about this, am I not living up to my faith, am I being vindictive? While it is hard not to be, I also decided that I am not fighting just for me, I am also fighting for all those in my situation, those who for whatever reason can't fight back, or have been intimidated into not fighting. Perhaps my fight will in some way help them. I hope that in some way God is using me and my fight to help others. If so, this is all worth it in the end, no matter what that end may be.
Deacon John
Friday of the Thirty-first Week in Ordinary Time
Nov. 6, 2009
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.