Update-Wednesday march 14

After the conference call, in which Dr. Orlandi explained what needs to happen during my surgery, Dr. Hunter (the doctor chosen by the ins. co. to perform the surgery) replied, "Oh, I can't do that." ...So now that the ins. co. realizes Dr. Orlandi truly is the only option, they have agreed to pay for the operation in full (not sure why that conversation couldn't have taken place a couple of weeks ago). Hallelujah! Prayers are answered. We are on for Fri. and I have a very calm feeling about what will happen. Thanks for all your prayers and support. 

Update-Tuesday march 13

Get this...we will not get an answer about whether or not the insurance company will cover my surgery until tomorrow...after their med. dir. has a conference call with Dr. Orlandi at 9:00 A.M. Therefore, I had to cancel the 8:00 A.M. MRI (and hope that if  Dr. Orlandi is approved we will be able to get the MRI done sometime before Fri.) We are hoping to have an answer before the P.E.T. scan @ 10:30 A.M. (it would be nice knowing if it will be covered 100% or if we'll have to borrow $7,000-$10,000 to pay for it.) Absolutely the craziest thing I have ever seen. talk about an emotional rollercoaster. Hal and Leslie

Insurance battle

And so begins the fight with the insurance company... they've agreed to pay for the surgery, but not for Dr. Orlandi. They "think" they can find someone in-network who can do the operation. Great... the "think" they can find someone who will not leave me blind, paralyzed...or dead. Call me selfish, but I'd really like a doctor who has actually done this before. According to my doctors, Dr. Orlandi is the only one (in a multi-state area) who can do this type of surgery. Please pray that within the next day or two my insurance company will decide that my life is worth a few extra dollars. If we can work things out with the insurance company, I will have an MRI and PET scan at the Huntsman Cancer Institute next Wednesday (March 14) and the surgery will be on Friday (March 16). I'll let you know what happens. Love you all.
Leslie

Update: 2/29/12

Last Thursday Hal and I met with Dr. Orlandi at the University of Utah hospital. He has decided to surgically remove the tumor from my head. It is located in such a delicate place that Dr. Orlandi is literally theonly Dr. outside of UCLA Medical Center who has the expertise to perform such a surgery. The tumor is located around the optical nerves and extends down to the base of the skull. The major concerns are the possibility of nipping the optical nerves (which could result in vision problems or even blindness) and spinal fluid leaks, which could result from removing the tumor and making the effected bone separating it from the brain too unstable. He also said that there is a pocked section near the bottom which may or may not be cancerous (It may be pocked as a result of radiation). If it cannot be removed, more radiation will need to follow. Yeah... it's a pretty big deal. However, on the bright side, both Hal and I felt very much at peace with Dr. Orldandi. We know we were led to him and, therefore, feel confident that things will turn out alright. The surgery will be on Friday March 16 and all prayers are appreciated (not just for me, but for Hal and the kids, and Dr. Orlandi too). Love you all. 

Update from 1/31/12

Well, unfortunately we are not done with this thing. We learned yesterday that, although the radiation did shrink the tumor, it is not gone, so we continue on this journey. We feel discouraged, but know there is a reason for all of this. Officially, I have a Solitary Plasma Cytoma in the Clavis (bone) of the Sphenoid Sinus (How many of you can say that?). I will go back to the Cancer Center tomorrow for additional blood tests to double check and make sure this thing has not spread, then next Monday we are on our way down to Ogden for another PET scan to see if the tumor is growing. If it is not, the doctor will just watch it closely. If it is growing I will be sent to a specialist in Salt Lake who may be able to remove it. The problem is that it is quite far back in the head in a very precarious place (exactly between the optical nerves). What an adventure this life is turning out to be. Trying to keep the faith. Love you all.

Tuesday, January 24th

I guess I should let people know what is going on...
 
I am finally able to eat again, which is very great. Olive Garden... here I come! I will need to be careful though. Now that I have lost 65 pounds, I need to keep it off.
 
Tomorrow morning (Jan. 25) I will have an MRI to determine if the tumor is gone. I will know the results next Monday, Jan. 30 at 3:30 P.M. when Hal and I meet with my doctor. My doctor seems optimistic that everything will be fine, but I am a little concerned because I am still experience problems with my ears and my sinusus. Prayers are always appreciated. 
 
Love you all. 

Update

 
It's probably time for me to let you know what's going on. It's been hard to get motivated to update my status because I've been feeling a bit sorry for myself. I kept hoping I could get on and say that everything is great, but unfortunately that is not the case. It's actually been a bit more difficult since I finished receiving radiation treatments. I didn't realize that the radiation would continue to effect me after the treatments were over. It's been quite surreal because I can almost feel the radiation moving up through my head. Once the sores in my mouth and throat healed, my sinuses became quite swollen and now that that is improving, my scalp is feeling sunburned. What an interesting adventure this has been. I've had an ear infection for 6 weeks now that is just not healing and I have too many kids and too much to do to be as patient as I need to be. I still cannot eat anything but Ensure, but things are slowly improving. I just didn't realize what an intesive process this would be. (Of course that is because Hal and I decided not to read the literature provided us and just take things day by day.)
 
This experience has certainly changed my perspective about everything. I like to think I am a little kinder and more loving... I am certainly more appreciative of my blessings and empathetic towards others. I am confident that the day will come when we will view this experience as a blessing.
 
Love you all so much.

 
Hal and Leslie