Jumping through hoops...

You would think the longer I go through this the more used to jumping through hoops I would get. Well that isn't the case! Each hurdle feels like the first. It is an extreme blow and very hard emotionally, physically and mentally.
As I said in my previous update, I had my MRI on Thursday. The results didn't come back as well as expected. My tumor has grown, the exact size is 11mm x 8.8 mm. This is so small, but for where it is, it's still too big! My blog levels continue to go up, my IGF-1 level is 722. A normal range is less than 0-307. The concern for it being this high is that my organs will enlarge and begin to cause other problems. I have had an echo cardiogram to check my heart a few years ago, and then it was fine. They are going to do another to confirm it is still OK. On a positive note, I still feel fine and have lots of energy. I am competing in a triathlon in Broomfield this coming Saturday, which I haven't trained for so it should be interesting!

The plan, I will do stereotactic (gammaknife) radiation sometime after September 22nd. I need to be off of my somoatuline depot for 1 month before being radiated. They say this will be better for the infected area. After I am radiated, I will continue with my monthly medication. Hopefully I will just have 1 radiation treatment, but at most I will have 3 all in the same week. My neurosurgeon talked to me in great length on Thursday about the side effects and what I could expect. I am still very hesitant, but I have come to the point where there is no other choice. I am told, where my tumor is in my cavernous sinus the nerves are very durable, so the possibility of stroke is small. It is far enough away from my optic nerve, so blindness is also a very small risk. The procedure is very short and easy. After the procedure is when I might have the most problems. The tumor will swell after it is radiated, which could and will most likely cause double vision in my left eye, as well as extreme dryness of my eye. This is transient and should subside in about 4-6 months. This is the part I am most afraid of! The radiation will begin to kill my residual tumor after about 6-9 months and will continue to work. I will stay on my medication for 18-24 months and then as my levels go down I will be slowly taken off my meds. The plan and hope is that I will be drug free and in remission. I will always have yearly check ups, but hopefully that will be it. The other concern is extreme exhaustion. Usually if this happens, they will put me on steroids to get my energy level back up. I told Joe last night, when I am hoping to be done with this Emma will be 7 1/2! I have been dealing with this since before she was born!! Ugh! I am ready for it to be over!

On Wednesday I received more bad news, I was dropped from the Pfizer bridge company. This is the company that helps pay for my meds, that my insurance doesn't pick up. My doctor has to send my blood level results to them, and since it is going up continually, they have dropped me. This has added yet another stresser for me and Joe. My meds are about 60,000 for the year. Luckily I was able to get some assistance from the University of Colorado hospital, but it won't cover it all.

I have had many emotions about this, I have struggled with the financial aspect of it and am frightened about the radiation. I am continuing to try and not think to far down the road, as I don't know what that will look like. Please continue to pray for me and Joe. Ask for peace and patience. Thank you for you love and prayers!

Prayers please!

This Thursday morning July 22nd, I will have yet another MRI. While this has become some what routine, it is something I haven't gotten used too. Not to mention there has been nothing routine about this disease. Please pray for good results, no new growth, clarity in what our next step will be. Joe and myself, as well as our families are both hoping to move on from this stage and start the next. I will update you all after I get the results. Thank you for all of your love and support, it means the world to me! Although I don't know what the outcome of this disease will be, I do know I am loved by many!

Holding pattern....

I hope you all had a nice 4th of July weekend. Joe was off on Friday and didn't have to go back until tomorrow (Tuesday). It's been really nice all being together. I had to work, so we didn't do a lot. We went to a few parties at friends houses, which was so nice.

I don't have much to update on, we are waiting to hear from the Pfizer bridge company to see if I qualify for assistance. Joe and I are both hopeful. I know that no matter what, it will work out. I have let go and have put it in the hands of god. I am confident that he will guide me and my family. I am still taking my daily injection (somovert), however I am taking it every three days and taking one day off. This is because of my hepatic function panel. My doctor doesn't want me to stop the medicine until I start the new one. I have another MRI scheduled for July 22nd. Hopefully I will have started my new medication by that date and then we can move forward with the radiation. I have decided to do a few more triathlons this summer, the Anthem triathlon on July 31st in Broomfield and the Outdoor divas on August 22nd in Longmont. I am going to start my training tomorrow. When training and competing in the triathlons, I feel strong and determined. I also feel as though nothing can get me down and I will over come this, I told Joe I need to continue to do them since it makes me feel this way!!