Today is the day....

It is still quiet in my house, Joe and the kids are all still asleep. It's cloudy outside, such a perfect day to sleep in. shockingly, I slept much better than I would have thought. It's hard to believe I have been putting this day off for over 2 1/2 years. I am nervous to begin, but also looking forward to finally being medication free. I know I saw this in every post, but thank you!! For all of the love and support, meals, CD mixes etc. You all are making me stronger and giving me the courage to face this head on. Joe and my mom on going with me today, and my younger sister is watching the kids. We tried to explain to Emma last night that I had to go to the DR everyday for awhile, at I will probably be really tired. I don't think she fully understood (how can she, I don't think Joe and I do either.) but she was very sweet and concerned. I am hopeful this will effect the 2 of them as little as possible. Well, I am off to do mommy stuff before heading to my first radiation treatment. I will update as to how the first treatment goes. Please keep me in your thoughts and prayers!

Approaching....

At this time next week I will have had my first, possibly second radiation treatment. Not to mention it will be Jack's 3rd birthday and the day before Emma starts kindergarten. Talk about when it rains it pours. Isn't it funny that life never just gives you one thing at a time? Joe always says god has a funy sense of humor, I think that is a good and positive way to look at it!

Well I would be lying if I told you I'm not nervous, scared,upset, sad,mad and any other emotion you can think of. I have faith it will all be ok, but until it is, I am having a hard time moving past the what I am going through right now. For a long time I have not let myself feel upset about my situation, but I decided maybe if I just felt how I felt and worked through my feelings I could truly move past them. We'll see, here's to hoping!!

My appointment is next Monday August 16th at 10am. Joe is going to be with me, and the kids will spend the morning with a girlfriend of mine. From my understanding of this process I should be perfectly fine immediatley following my first treatment. It's over the course of a few days to weeks that I will be extremely fatigued and possibly sick. I keep thinking of what the radiation oncologist said to me last Wednesday...." If you are a lucky person, you will go through the treatment and it will work and you will have no side effects, if you are an unlucky person it won't work and you will have every side effect." I was crying and I just laughed and said, "well look at my file, I am clearly NOT a lucky person." Dr. Gaspar says to me " there are many people out in the waiting room that would love to change places with you." This made me think, I am lucky... I am lucky to have a great medical team looking out for what is best for me, lucky to have have an amazing husband and kids, lucky to have an unbelievable supportive family, and so lucky to have so many friends that are like family willing to provide me with endless amounts of love and support! So as I walk into that office next week, I am going to remind myself, again and again how lucky I am. What I would like from each of you is to also remind yourself again and again how lucky you are. You are all such blessings in not only my life but so many others. Thank you for being my rock through this extremely draining process. I am looking forward to celebrating the ending of this, by the first week in October!!

Meeting with the Radiation Oncologist

There are some things I think people should never have to do in their lifetime, but still many do. I think walking through the doors of a Cancer center to be treated for Cancer or not for Cancer is one of those things. Today I had to do this. I met with Dr. Laurie Gaspar, she is the chief radiation oncologist at the University Colorado Hospital. My appointment was at 8:30am this morning. I walked in and was greeted by a man that said he would be my host for the day. I found this to be irritating, because this was not a place I wanted to be. However, I do appreciate that the staff knows this is a hard thing for patients and their families so they are trying to make it the most enjoyable experience possible. Everyone was very nice and very informative. I sat down with a 4 year medical student (it is a teaching hospital, so this is to be expected. I have learned this over the course of all my treatment.) I chatted with him about my story, he went to get Dr. Gaspar and we went over it with her. She listened to the story, looked at my MRI and quickly came to the conclusion that she thought having the stereo tactic radiation treatment would be to risky for me. She said that my residual tumor is only 3-4 mm away from my optic nerve, which is to close. The whole area that will be radiated is only 1.2 cm I know you all are thinking the same thing I was, that is SO small. Regardless of how small it is, it is not safe to do that type of radiation. So, the plan is to do the fractionated radiation. This means a lower dose over a longer period of time. This to be exact will be for 5-6 weeks everyday Monday through Friday down at the University Colorado Hospital. Once again, I was deflated! I was assured that it should be fairly simple with little side effects. My biggest side effect will be fatigue, and possibly nausea and headaches. She then took me to the CT scan room where they fitted me for my 'head piece' for the next 6 weeks. I will wear this during my treatments, which shouldn't last more than 20 minutes once they begin. The whole process of fitting me for my mask was unnerving. I sat and said over and over again the our father prayer. The other big development of today was that they want to begin the radiation on August 16th. A month sooner than I had anticipated! I am asking you all to say an extra Our father for me tonight, as well as everyday over the next 6 weeks. I am very scared, and don't want to do this. I know this is what the next step in this journey is, but it isn't making it any easier for me. Please think of Joe, Emma & Jack. Pray that they all can get through this with little interruption. Also pray for my family and Joe's family. They are such an amazing support group for me. They have all offered to help Joe and I with the kids, as well as accompany me to my treatments. I think we are all scared, but know this will work, and that I will be drug free and in remission in the next 24 months. As always thank you all for you love and support!

I have attached the picture of the mask I will wear during my treatments. It is used to bolt me to the table so I don't move during. Yes, it really is as horrible as it looks!

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!!

Update

I was hoping the update would be different, that's why it has taken me a few days to actually write about it. Prior to my MRI on Monday, my endocrinologist did some blood work which confirmed my hepatic liver function was compromised. The medicine I take daily, somovert had the side effect of being potentially harmful to your liver. The chemoboliztion is also hard on your liver, so she thinks the two of these together put me in a position to be at risk. So I knew going in for the MRI on Monday I wouldn't be able to continue my current medication. So, I had my MRI, the tumor has not shrunk enough to do the cyberknife procedure. So plan B will be to do the radiation that is a lower dose over a longer period of time. As of right now the plan is to have yet another MRI on Thursday July 22nd. She is taking me off of the somovert. It hasn't done any long term damage to my liver, but the concern is that it could which will only cause more problems. She has found another drug that is very new. It is in Sweden, and will help lower my IGF-1 level without harming my liver. It will be injections 2 times a day everyday. I am waiting to hear about an approval for the patient assistance program. How is stands right now, my copay will be $15,000. for a 6 month supply. The hope is Pfizer bridge program will pick me up and continue coverage until after my radiation. The plan is to do radiation the middle to end of August. Since it will be be 4 days every week for 6 weeks. The thought behind waiting was to have the kids in school and hope things slow down a little bit! I don't know if you are thinking what I am thinking, but things never seem to slow down!
So, it's not the best news, but not the worst either. I am trying to remain positive and deal with one thing at a time. I can't think much beyond that because I get very overwhelmed. Joe, the kids and I are all keeping busy. Joe is very busy with work, and I am busy with work, and the kids. My new mantra is one foot in front of the other!
Thank you to all that have given so generously and those that are following my blog and have offered love, support and prayers. I am so blessed to have you all in my life!