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......