Done with Radiation.

DONE! I have completed all 6 weeks of radiation! The whole thing, every part of it totally sucked, but I finished it!! The plan...I will have blood work done every 4 weeks and my first MRI will be on December 18th. I will remain on all of my current medications. I will do my daily injection of somovert and my monthly injection given by my ever supportive husband! Thanks babe! Until we see the tumor to shrink. This could take a while. I should not be alarmed if nothing has happened even after a year. I am praying that it happens much sooner than that. I will be closely followed by my whole team of doctors down at the University Hospital. I am grateful to be done with the everyday treatment part. I love being home and feeling some what normal.

I had a wonderful party at CB & Potts on Friday night to celebrate the completion of treatment. Thank you all that came, I had so much fun!! Thank you Joe and Jamie for planning my party and for the added touch of the lottery tickets! Although I didn't win anything more than a $1. I feel extremely lucky to have finished radiation with no problems and with the prognosis looking good! I will take that over a winning lottery ticket!!

Final stretch.

Such wonderful words, final stretch! You would think since I have less than 5 treatments left after a daunting 30 this week would be great. Well, I think the last six weeks has set in. I am tired, beyond tired! I tired I have never known before. I for the most part do really well and power through but some days are better than others. I am still having some headaches, more frequent and the intensity has increased. But when I hears words like "your face seems different?" or "your nose is smaller!" it makes all these things seem so silly. My last treatment is on Monday, Joe is going to come with me to celebrate. I am told that the receptionist Bill that I see everyday and have grown to really enjoy will give me a certificate and blow balloons. At first my thought was, why would he do that it's only radiation?? But know that I am almost done, I am looking forward to the celebration!! Having 6 weeks of radiation is a big deal, and a big deal to all that are close to me. This has challenged me on many levels over the last few weeks. I have been emotional, frustrated, sad, mad, happy, excited, nervous....you name it I'm sure I felt it. It has taken a toll (hopefully a small one) on my kids and Joe. I have needed help in and for periods of time I never thought I would. It has been a very humbling experience. Thank you to all of the family and friends who have brought us a meal, watch our kids, drove them or picked them up from school, kept them for sleepovers or playdates, friends and family that rode with me and watched me be put in that terrible (but necessary) machine, the CD mixes, the phone calls and texts, all of the prayers, love and support! If I am forgetting something it's not that it didn't mean a great deal to me and my family but there has been such an amazing amount of support it is hard to keep track! :)

As of right now, the next step is to wait. I will remain on my medication and have a follow up MRI in 6 months. They think doing it any sooner than that will not show enough results, I will still be followed by Dr. Kerr, Colin Catel and now I will add radiation oncology to my rotation. I never knew I would be such an expert on this sort of a topic! So, while I won't be undergoing radiation after next week my journey is not yet over. So if you could say a prayer for me from time to time I would so greatly appreciate it! I pray and thank god for all of you daily. It's the people in your life that help you get through the most challenging things, I couldn't have done it without all of you!!

Joe you have been amazing, my rock! Thank you for being by my side through this whole experience. It's hard to believe that I have had some sort of symptoms since before Joe and I got married over 8 years ago!! Looking forward to my new normal!!

I have added a picture of me before radiation, earlier this summer and one taken last weekend while on radiation. I don't know if you can see any changes, but I sure can!!

Week 3 down....

I have now completed week 3 of my treatments, 15 to be exact! I am halfway done, 15 more treatments to go! As exciting as it is that I have completed half, it is daunting to think I still have the other half to go. The beginning of the week went fairly well, I was able to work and was very excited to be there. My energy was up, so I didn't rest. I was so pleased with this early in the week, however by Thursday my no resting had caught up to me. During my treatment on Thursday I had a ringing in my ear, and then a horrible headache followed. I was put on IV fluids and was given an injection of dexamethasone. This is a steroid that reduces swelling in the brain which is causing my headaches. Joe was so great and worked from home on Thursday and took care of me and made sure the kids got dropped off, picked up etc. I was able to rest all day! Thanks babe! I woke up this morning to a dull headache and very tired. I went to my last treatment for the week and met with my doctor. He told me I MUST rest each day! I get it, I get it!! He informed me that during the last 3 weeks of my treatment, I could expect to become more tired, and have more frequent headaches. Yay, not quite sure I am still excited about being halfway done. Anyone that knows me, knows I don't sit around. I am a mover and a shaker. So laying around is very foreign to me. It's something I am going to have to get used too! Going to my treatments daily and seeing all of the people that are sick has been a very sobering experience, it puts into perspective for me how precious life really is. We aren't on this earth for very long, and while we are here there is so much heartache and hurt. But there is also so much love and compassion. I watch the families waiting for treatment, with their babies or husbands, wives, parents, friends no one knows what the future holds, just grateful to be right there in that moment. When I leave I try and take a little of that with me each day. I don't like that I have to do this, I hate that I am missing out on taking Emma to kindergarten in the morning and Jack to preschool. But I am so grateful that I have the opportunity to get better. While it might take a while, I believe this will work, and I will be taking my babies to school before I know it!!

Week 2 down....

I have completed my second week. While it is still not something I enjoy, I am settling into a routine of waking up at 615am to make it to my treatments in Aurora by 8am. I walk in and quickly begin my treatment, walking out of the hospital at 826am. I feel good in the morning, but as the day goes on I usually get a headache, upset stomach and the newest thing has been dizziness. After talking to my doctors, the headache is a good indication that the radiation is hitting the tumor so it is swelling causing the headache. So while I have to have a horrible headache, at least I have comfort in knowing it is doing what it needs to be. This week was a little more stream line on the home front this week. Jack did start preschool on Tuesday morning. He likes it a lot, and seems to be doing well. Emma is settling into everyday kindergarten. She is still tired at the end of the day, and she still says it takes to long when I pick her up. But she too, is doing well. Joe was busy this last week with Town of Erie stuff, he did however help pass the golf cart law. He was very excited about this victory!

Thank you to all who has provided meals this week. Thank you to Randy and Bev for taking care of the toll expense for me, this is a HUGE help! Thank you to Jamie for making me my count down cards with a very motivating quote in each of them. It helps get me going every morning, and Fridays Jamie when you come with me to my treatments and you treat me to breakfast. Not to mention all of the help you have all given with the kids, getting them to and from school and allowing me amble time to rest. I am so very fortunate to have such a strong family and friend base. Thank you, thank you from the bottom of my heart!

Joe took this picture last Friday after my first week of treatment. I was tired, but doing well!

Setting In...

Well week 1 is under my belt! There were a lot of firsts last week for many things, which made it a much more emotional day. Today going in starting week 2 wasn't as scary. It was however daunting! The thought of still having almost 5 full weeks, 24 days is still so much! Ahhh! Trying to just take one day, one treatment at a time.
I feel pretty good after week 1, no real side effects. I noticed being a little more fatigued on Saturday while setting up the concert. It has also been really hot, so this might have something to do with it. My somavert dose was increased to 20mg daily injection, which has left me feeling very ill all day! As if radiation weren't enough! I am grateful for Jamie for taking Emma to school, and keeping Jack ALL day! Thank you so much!! and Michelle for having Emma for an after school play date so I can rest. Thank you both so much, I couldn't have gotten through it today without you! Hopefully tomorrow I will feel better, and I can keep plugging away at all my treatments.

Visual...

I am a visual person, I thought some of you all might be too. I took some photos today after my 2nd treatment. One of the pictures is the mask I wear every treatment, the other is the machine and the 3rd picture are two of the radiation therapists that I will see most days if not all. Their names are Theresa and Cara. Both have made this as painless as possible. I'm sure over the next few weeks, I will become good friends with them!

The 2nd treatment went better today. I had much less anxiety than yesterday. I am not loving doing this still, but I am feeling more positive and liking the fact that we are getting this thing out of my head. I'm sure the more I drive down there and do it the more routine it will become.

Jack had a great birthday, very low key but nice. Emma is all bathed, tucked in and ready for school tomorrow. I know she is ready and is so excited, but Joe and I still can't believe our baby girl will start kindergarten tomorrow. Although this bump in the road seems quite big right now, I know that in the coming years it will seem less. I am so very fortunate to have the life that I have!

1 down!!!

Who said one didn't count??!? Well it counts a lot for me! I am down 1 treatment and have 29 more to go!!! As I stated earlier this morning, Joe and my mom went with me, while the kids were with my younger sister Emily. Once I arrived they quickly took me back, (I once again didn't even sit in the waiting room) Joe and my mom went with me. We went right to my treatment room where they had everything set up. Joe put the mixes that John and Kate had made for me on his ipod, so when I got there I was able to plug it into this stereo. There would be NO way I could wear ear phones. They made some adjustments to my mask, so it's pretty tight. Joe and my mom stayed in the room while they bolted me to the table. I began to cry, such an unreal situation. Prior to being bolted Joe and my mom both came over and kissed me. I think it was pretty difficult for both of them to watch as well. Once I was bolted in, they both went back to the waiting room. The radiation therapists got me set up and took some xrays before beginning, once they had the pictures taken my radiation oncologist Dr. Gaspar came in to check the machine to ensure everything was as it should be. Once they began it took about 20 minutes, 4 songs! Other than the mask being tight, it didn't hurt at all, I didn't see anything or feel anything. Once I was done, my mom Joe and I all met with the Dr.'s I think I did a good job of relaying the same message the Dr.'s did, however I was glad that Joe and my mom had a chance to meet them and ask questions.
I have felt pretty good today, I have had a pretty upset stomach and have been a little tired. I don't know if this is because of the treatment or just because emotionally this has been such a difficult thing.
I am so glad day 1 is over, looking forward to doing a blog saying I have 1 day left. But like I said this morning, you have to start to finish. I'm relieved to have started!!

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!

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.

Amazed...

Since finishing my blog and posting it yesterday, I have had some generous donations. Thank you doesn't begin to even touch how grateful both Joe and I are. Just having this out there and letting our friends and family know the story is a weight lifted. We are so appreciative for you all, the outpouring of love and support is overwhelming. Thank you!!

Today Joe, Emma, Jack and I are going to spend a quiet day as a family. Something we don't do very often, due to our busy schedules. Joe and I have both been under extreme amounts of stress, which we believe has resulted in both of us getting sick. We are looking forward to being together and enjoying the beautiful day!

Thank you again!!

What is going on today....

I live with daily injections, monthly injections, pills and most currently a new treatment called chemobolization (even though it isn't cancer) they are trying a new technique to see if this will help shrink my tumor enough to be able to perform radiation. The goal is to do the cyberknife. Less invasive and would hopefully be able to get more of it. The down side to radiation is that it is not immediate. Once it is done, it will take at least 18-24 months for the tumor to "go away". Which means, I will need to remain on all of the very expensive meds that I am on. The patient assistance company dropped me, so I had to find another company to take me on. In the interim while I was hoping for another company to pick me up, I couldn't discontinue treatment, so I had to send the little money in mine and Joe's savings account. Which has put a huge strain on things for our household. My mom has had to take out many loans that we pay on monthly. This monthly bills are a killer! Joe and I both work and we do well, however this is something that we never thought would happen and continue too.

Like I said earlier, I try not to be defined by this disease, which is why exactly one year following my brain surgery I competed in the Greeley triathlon. As I crossed that finish line, I felt empowered. I can do anything I set my mind too! Last summer I went on to do the tri for the cure and the Longmont Oktoberfest. Already this summer I have done 1 and am hoping to do more. I feel like if I feel good enough to be doing them I shouldn't take that for granted and need to get out there and do it. I also don't want Emma and Jack to look back on this process and to think I have had self pity, but instead made the best of what cards were dealt to me even if it is hard.

I have an unbelievable support group, so many friends and family that love me and would do anything for me. It is very hard to ask anything of anyone, especially the people whom have already done so much. But we are at a point where we need some help financially. If you can donate a dollar a month or whatever you can stand to do, Joe and myself will be extremely grateful! We need to pay down on this very expensive medical bills. Heaven for bid, but if something changed for me and I need more funds for a medicine I had to have, I wouldn't be able to do it.

Even if you choose not to donate, I appreciate you taking the time to read my story. If you don't know me, I am a very loving, kind, outgoing, positive individual. I love life, and I am grateful that I have the one god has given me. The saying, What doesn't kill us only makes us stronger, well I believe I am very strong and my strength may be tested at times, but I try and remember one foot in front of the other.

This coming Monday June 21st is my last chemobolization treatment, and following that I will have an MRI in hopes that it has in fact shrunk enough so they can perform the radiation. If it has, (I believe this is working) I will have the radiation on the June 22nd. I still have a long road ahead of me, and who knows if I will see the light at the end of the tunnel, but I plan to continue living each day to the fullest, being a good wife, mother and friend.

I will update daily, so please follow my blog so you can see how things progress.

Thank you for taking the time to read my story!

I would love to hear from any or all of you, take care.

I have Acromegaly, but I am a tri girl!!

Hang on tight!

On an evening I had to work, I was getting ready waiting for Joe to get home when I suddenly had a horrible pain on my right side. I have been through a lot, and that particular pain was pretty significant. Not something I could ignore. Joe called his dad, and he came up and sat with the kids and Joe and I headed to Avista. There they did an ultrasound and a CT scan. They also gave me something for pain. After waiting, for what seemed like forever, the ER doctor came in and said to us that I had a 4cm mass on my right adrenal gland. He said those types of things were usually nothing but to get it checked by my primary doctor. I wasn't in pain anymore so they let me go home. We never did find out what was causing the pain, and as things have progressed I actually think finding that tumor has been a blessing. This all happened in the first week of March. So over the next few weeks, I googled and looked for symptoms on the Internet. Finally one evening I had myself so freaked out I called my dad. He is a radiologist in Glenwood Springs. He told me to come up there and he would do another xray and see if anything had changed or if he say something different. On the following Saturday I woke up at 5:30am and drove to Glenwood. He did an xray, and said "I'm not sure what it is, but it's big and it shouldn't be there!" I kept asking if it was cancer, he said he didn't think so but didn't want to give a definite answer. Since he had worked in Longmont at the hospital prior to moving to the mountains, he called Dr. Berg who is a general surgeon. I was seen by him that Monday. When he looked at it, he said this is an endocrine issue and you need to see an endocrinologist. I had made an appointment with Dr. Robinson prior to all of this because I wanted to see how I could live with PCOS, especially since we were done having kids. I had to wait more than 2 months to be seen. Dr. Berg pushed me ahead and I met with Dr. Robinson on that Thursday. I must add, this was also the day I was leaving on a girl's trip to Miami for a bachelorette party. My appointment was at 9am, and I had to leave for the airport by 11:15am. I went in and the first thing she said to me was, "I think you might have cancer." I don't think I heard anything she said after that. All that kept running through my head was, I have 2 little kids, a husband and I'm not even 30 years old! She did a lot of tests, she drew 21 vials of blood. She tested my blood markers for adrenal cancer. She said she would call me with the results. You know how I mentioned I was going to Miami, well I went. I wouldn't say I had a great time, because I was obviously preoccupied. I didn't get the results until Monday afternoon, everyone that loves and cares for me was on pins and needles. My markers came back negative, whew! She then wanted to perform more tests, so over the next few days, I had blood tests, urine analysis, CT scans, MRI's you name it they probably did it to me. I took a break for my 29th birthday, which is on April 22nd. The next day April 23rd, she asked to do an MRI of my pituitary gland in my brain. It was a Friday evening, they got me in at 4:30pm. After they did the study, my dad called and asked to hear the results when the radiologist read them. On Saturday morning April 24th, I got a call from Dr. Robinson, the on call radiologist and my dad and was informed I had a 2cm bulging macropituiary tumor. Dr. Robinson said, you will need to have brain surgery to have it out and will also have to have the adrenal tumor out. She suggested doing them at the same time, I quickly turned that down. She also referred me to the University Colorado hospital in Denver.

I would like to add, I have 2 sisters and both of them have pituitary tumors as well. My older sister Kate has a prolactinoma, and is on medication and is doing well and my younger sister Emily had a tumor but it wasn't doing anything. I however, have a hormone secreting tumor which is diagnosed as Acromegaly. It means giant ism. I am not tiny, but I am definitely not a giant. Talk about losing some self esteem. It explained everything though, the enlarged fingers, feet, nose, carpal tunnel, infertility, lack of menstrual cycle, jaw problems, headaches. Seriously, everything that made me feel bad was because of this. I also failed to mention, it is rare. Very rare! In fact 4 in every 4.3 million people have it! Should I play the lotto?

This was only the beginning to all the appointments and surgeries I was set to have.

On May 1st 2007 Joe and I met with Kevin Lillehei a neurosurgeon at the University. He is the best, everyone commented on god working through Dr. Lillehei. I was relieved he was in our insurance network and he was ranked one of the best in the nation. He met with Joe and I one Thursday evening. We waited a long time for this appointment too. Once we did though, he was one of the kindest men I have ever met. He gave us the time and attention we needed. He said I need to have a transphenoidal surgery. This means he would go through my nose and dissect as much of the tumor as possible. He also said he didn't think it was cancer, but would send it to be tested after surgery. He also said that I have tumor surrounding my carotid artery, which means he wouldn't be able to get it all. I would have to been medication after surgery. He explained the risks and the procedure to us. He also informed me that after surgery I would be in the ICU for a day and then in the hospital for a few days following that. I couldn't lift over 5 pounds for 4 weeks. (This was going to prove difficult seeing as how I had a 8 month old little boy who weighed 20 plus pounds.) I also couldn't drink out of a straw or do anything that would cause any pressure to my head. As Joe and I left, I was relieved that we had someone that could help me, but so scared that something would go wrong.

On May 21, 2007 Joe and my mom headed down the University and met Joe's parents Randy and Bev there. I checked in, and we all sat and waited. It was horrible for everyone. I think this is the one day I was happy to be where I was. I couldn't imagine what was going through Joe's head. His wife, mother of his children was going in for brain surgery at the age of 29. Would she be OK? How scary those 4 hours must have been for my family, especially Joe. We are a team! I came out of surgery, and was doing well. I was admitted to the ICU where they monitored me very closely. I had a spinal leak, so I had a drain down my back. I was very thirsty, which meant I had diabetes insipidus. My vision was still a little weird, but I didn't have a headache! Yay, that is the first time in a year that I didn't have a headache. I felt pretty good all things considered. Before surgery my IGF-1 level was 1200, most people are very low or undetectable. After surgery it only went down to 900, this was discouraging for me. But you have to remember I still have a hormone secreting tumor that is not operable.

I went home over memorial day weekend, my mom, dad, Randy, Bev, Joe and the kids were all there to greet me as I got home. I was a little overwhelmed, and was on steroids to prevent swelling in my brain. I was very tired, and sleep a lot those first few days. My family was amazing!! Once Joe went back to work, I had to have someone here to help me because I couldn't lift Jack. So between Bev, my mom and Adam (my sister's ex husband) I always had someone to help me. Joe was always on, either between work or stuff here at home. He was a rockstar! He never complained, just seemed grateful. Over the next month I met with my endocrinologist Janice Kerr at the University Colorado hospital several times. She put me on high blood pressure medication, (it was elevated during pregnancy because of this.) Cabergoline, (my is a dual secreting tumor) and the spray for the diabetes incipidus. Over time she added a drug called Somatuline Depot. It is a drug that is administered through injection. It's a huge needle, looks like a dart! If Joe wasn't already amazing enough, he is the one who gives me the shot monthly in my back. I need to mention, this drugs are expensive!!! For 1 month's shot it is $2000, our insurance only would pick up $1500, which still left us with a $500 a month copay. That's more than our car payments, we had not budgeted for that. I was lucky enough to find a patient assistance program called PSI, Patient Services, Inc. They were able to pick up the remaining portion that the insurance company couldn't.

Then on August 11, 2007 I went in for the adrenalectomy. I was told right before I went in that they would do the surgery laposcopically, but if when he got in there it looked like cancer he would convert to an open incision 11 inches along my rib cage. They also wanted to consent me for an epidural because it would be very painful. I looked up at the doctor and said "but my markers came back negative." He quickly replied and said that is a gage and doesn't always mean anything. I started freaking out! They took me back and did the surgery, when I woke up I was in so much pain! The worst I had ever been in. I looked at Joe and said, it's cancer isn't it? He said no! Thank god!! I was in the hospital for a few days in a lot of pain. But once all the stuff was out of my body I started feeling very good.

I continued to go every 3 months for check ups, blood work, MRI's. My blood levels were still going down, but not very fast. So Dr. Kerr began trying many different types of drugs. All of them were extremely expensive! Thank god for the help of my mom! So many other people have helped me too! But my mom has been amazing! She has made all of this possible. We have been trying to get me to a point of stability so that they can do radiation on the remaining tumor. Which has been far to risky.

I try not to let this disease define me, however it has been so consuming financially, emotionally and physically.....

The beginning....

It all began when Joe and I moved to Georgia in 2003. We had begun trying to start our family, both of us were so excited and couldn't wait for it to happen. Prior to our move, I didn't feel well. I would take pregnancy test and they would come back negative, each time I would be so deflated. I couldn't sleep, I had horrible nausea, and I just didn't feel like myself. Everyone kept saying, "You are stressed because you are moving." Which was valid, I was. Joe and I got to Georgia June 20th 2003, while so excited I was also very sad to be leaving our families and friends. We bought a beautiful home in Acworth, with a huge yard and very close to a lake. Joe and I unpacked and started making our new home our home. Joe's family came and spent the 4th of July with us. We went out on the lake, and toured around the city trying to get more acquainted with it. We were sad to see them go, but again still excited for our new adventure. My mom came out a few days later, because Joe was starting work. Her and I explored, and shopped, hung out and enjoyed some time just the two of us. One day while we were in Costco I decided to buy a pregnancy test, thinking of course it will be negative but I will give it another shot. I was always irregular with my monthly cycles, so I wasn't really sure when it could be happening. When I got home I was anxious to take the test. I did and it came back positive!! I was so excited!! I showed Joe when he got home, he too was excited but more hesitant than I was about telling people. Little did I know that many people experience unbelievable heartache while trying to start a family. So, I told everyone. Sent out a mass email informing all of our family and friends! Joe and I had our first appt. with my OB after my mom left. We waited a LONG time to see the doctor. Once we did, we were pleasantly surprised that we would get to have an ultrasound and see our baby. Or so we thought.... when the nurse put the machine on my stomach, she looked and us and said the baby did not have a heartbeat. I couldn't comprehend what she had said. I looked at Joe and said are you sure? Please look again. Hoping it would be different the second time they looked. It wasn't. I had a D & C a few days later. Joe and I were emotional about this situation, but we both believed that god made a choice that we wouldn't have been able to make. We also know that we have an angel that is always looking down on us. This was the beginning for me medically....

I went to see my OB, after many test he diagnosed me with PCOS (poly cystic ovary syndrome) which explained so much. I had always had irregular menstrual cycles, I had a lot of weird hair growth on the neck and my arms, and stomach, and acne. I asked my DR if I would be able to get pregnant, he informed me that while it might be harder he thought I would be able too. So I was given a drug called provera to get my period and then clomid to ovulate. We did this cycle a few times and I didn't get pregnant. I then went on a strict diet, lost 20 pounds. Continued with the provera and clomid, Joe and I then booked a cruise. Thinking a get away was in order. Our daughter Emma Jeanne was conceived on that trip!! She came into this world in Louisville, Colorado on February 18, 2005. I had no idea I could love someone so much! I had never seen her, but I knew I would do anything for her. I hope one day she will realize how VERY wanted she was. I am grateful for the first miscarriage for the pure fact that I wouldn't have Emma. Lord knows I don't know what I would do with out her!

After she was born we were your typical family. Joe would go to work, I stayed home and played with Emma and other moms and their kids. When Emma was about 16 months old, I started getting the itch to have another baby. I was concerned that it would take awhile, and I didn't want our children to be far apart in age. Like I really had a choice! So I went to my DR and once again was put on the provera and clomid, which worked! Joe and I welcomed our son Jack Michael on August 17, 2007. We were overjoyed! A daughter and a son, how lucky are we. Both born beautiful, healthy, ten fingers, ten toes! Once Jack and I got home from the hospital is when I started not feeling well. Both my pregnancy were induced a week early due to high blood pressure. Which can be common in pregnancy. I had acne, again goes along with pregnancy, and the hair growth didn't go away. Seven days after we were home, I was taken back to the hospital for a staph infection. To this day we are still unsure exactly what went wrong, but I was in a lot of pain and it was a good thing I went in. I was hospitalized for 3 days and had yet another D & C to help "clean me out".

Once I got home, we started establishing our normal routine. Or what was the new normal. I was often tired, and had headaches. Everyone I would talk to would say "you just had a baby and you have a 2.5 year old". Both true and were good reasons as to why I didn't feel well. As time went on my headaches became much more severe, I got carpal tunnel, my nose was widening, my ring had needed to be re sized 5 plus times, my feet were wider so I needed all new shoes, I got carpal tunnel and my jaw constantly hurt and would pop out of place. I was a mess!! I went to the DR to ask about the carpal tunnel and she once again said "it's because you just had a baby, you have more blood flow." Of course I was glad she didn't think it was something more serious. My jaw began hurting more and more, we thought this might be what was causing my headaches. I saw my dentist and he said I had a horrible over bite and I should have my jaw broken and reset. WOW! That's a big surgery! Joe and I went to Omaha, to see a very good family friend who is a dentist and he referred me to a surgeon there. That DR told me not to do the surgery, that breaking it and resetting it wouldn't help and to just get a night guard. We were thrilled! A solution to the problem, or so we thought.

I got the night guard, it helped some but not much. I was still very tired, headaches with vision problems, carpal tunnel, etc.... when I went to bed I would wear braces on the hands and mouth guard in my mouth. Geez, I looked pretty! Sorry Joe!!

I would sleep whenever possible, Joe was a huge help and would get up with Jack often and let me sleep until the last possible moment.

I never got used to the way I felt, but I didn't know what else to do, so I went on about my life. I was never overly energetic, but tried to always have my upbeat personality. Even though I was faking it, and was miserable! I kept reminding myself, you have these 2 beautiful children, enjoy them! When Jack was 6 months old I got a job at the Erie Community Center in the evenings when Joe was home. It was great, earn a little bit of money, have some adult time and the kids didn't need to be in daycare. Again, days were very difficult. I would go to bed with headaches and I would wake up with them. I always had them, but again I tried to be positive.

Then I needed to make yet another emergency room visit......