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!

Tomorrow

Well tomorrow is yet another big day... I have an MRI to tell me what the next course of action will be. While I feel well physically, emotionally I am extremely drained. I am trying to remain positive, which I feel like I am doing pretty well at. We were with good friends last night at a party which also helped.
The love and support that Joe and I have received has been amazing! We could not be getting through this difficult chapter in our lives without all of you. Keep me in your prayers tomorrow, for the tumor to have shrunk and for a plan that both Joe and I are comfortable with. I will update you all with results when I have them.

Imperfections

From Joe Carnival:

I’m guessing some of you have now gathered the blog is now private. Throughout the course of this journey we have learned there are different types of people. People always ask how you’re doing but not everyone is really interested in the whole answer. I’ve also discovered the people who truly care, and want to know how you’re doing, are not necessarily the ones you would expect.

It has felt good to share this story and I’m not embarrassed or ashamed that it’s now out there. However, we’ve decided to only share it with the people who want to share in this part of our lives. It’s also been inspiring to hear from others who are having their own personal struggles and have been inspired by this story. Someone who I truly admire wrote to us saying ‘Even the Good Lord excepted help when carrying His Cross’. I suppose this example of our Lord accepting help in a time of need makes the point better than I could ever put into words. I hope more people who are struggling also find comfort in this example and swallow their pride enough to say they need help. If anyone knows of someone who might be encouraged by following this blog, please send their email and we would be happy to include them in the blog.

The truth is, I’m not sure how this story will end and each day is a new surprise. Today was no different when Liz found out her liver function was not where it should be and the radiation treatment was canceled. Who knew someday we would ever be in a position of hoping for radiation. This news was a difficult blow because we were praying to get over this stage of her treatment. Despite this news Liz stay’s positive. She had a good cry, pulled herself together and went to work. I’m not sure how she does it but she is more positive than most people I know. I try and follow her example but most day’s she keeps me more positive than me her. I know this is one of my imperfections and is something I’m trying hard to work on. Speaking of imperfections, Liz’s imperfections pale in comparison to the size of her sprit, heart, and generosity.

To Liz- I will be by your side throughout each and every day of this fight. You are an amazing person and have the biggest heart I know. I know someday we will find meaning in this struggle. Until then, we are in it together and have now found love and support in some wonderful people who really want to know the whole story. I love you honey and thanks for being you. I wouldn’t want it any other way.

The bottom line

Some of you may or may not be wondering the exact amount in medical bills we have. I want to start with saying, Joe and I are not destitute. We are able to pay our mortgage, and put food on the table. The fact of the matter is, we haven't planned or budgeted for my medical expenses. Joe and I have used what little we had in our savings account as well as the money we have been saving for, for both Emma & Jack's college. We are not looking to have help in reimbursing either of those things. The big issue for us is paying down on the 25k plus there is in loans. Our main concern is we don't know what the future holds, so that being said if we don't take down some of the debt and need to get more for future medication we will be piling debt on top of debt. It is so hard to ask for help, I have gone back and forth all weekend with just taking the blog down and not asking for help. This is out of Joe's comfort zone as well. However, if we don't do something there could come a day that we have so much debt and I need other medication and we have no way to pay for it, which will leave no other choice but to stop being treated. Joe and I have swallowed our pride and put our family's story out there for everyone to read. This has not been easy!! But please know, we are not looking for someone to pay our bills. We both have good jobs. We are talking about an additional 2,000 in bills a month on top of our own living expenses. We don't lead an extravagant life, we live in the house we do and drive the cars we drive because it works with our income. We are both loving and caring people and appreciate all of the support that has been given.

Most of you have never seen me administer my medication on a daily or monthly basis, but I thought I would include a picture of what my daily and one shot is my monthly routine. Usually after I am given (by Joe) the monthly shot I have, I have some sort of stomach upset and loss of appetite.

Joe and I are continually talking to my doctors and looking on the Internet for grants and medical scholarships, we pray that someday something will work there, but in the meanwhile we had to start somewhere.