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Doctors, Meds, Mutations...Oh My!

When thinking about how best to describe what my life has been like since finding out I have cancer my mind drifted to the image of Dorothy in The Wizard of Oz. Right away, I felt old and realized I am to the point in life where my references are aging me. However, I've decided it's better to just embrace it because I'm sure it will just continue to happen. I was raised by a Kansas born mother who loved watching anything she could sing along to. Yes, I know the words to The Sound of Music and don't get me started with White Christmas! In terms of Dorothy, immediately I was taken to the scene where Dorothy, the Tin Man and the Scarecrow were linked arm in arm just waiting for something frightening to jump out at them. Well I have to say I am right there with them!

Once officially diagnosed there was no time wasted. I quickly started radiation specifically to the tumor on my brain stem. On January 14th, 2019 I had my first radiation treatment. Many have asked what this was like and really the treatment itself wasn't bad. I would go daily to receive treatment and it only lasted 10-15 minutes. I would lay on a platform and the technicians would strap my head to the table with a mask that was molded to my face. From there, I would be raised closer to the radiation machine and it would rotate around my head a few times. Painless and quick! However, during my first treatment I did experience some anxiety. A combination of being strapped to the table and the realness of what I was dealing with overcame me. Thankfully my Aunt Jane, who was with me at the time, asked the technicians to play christian music. I just laid there praying my way through it. After that initial treatment the process got much easier. The only downside were the side effects and boy were they miserable. I experienced terrible nausea and tiredness. On several occasions I actually would vomit, but mostly just dealt with the sensation of needing to. During this process, I was also anxiously awaiting results back from my lung biopsy. These results would declare if we were dealing with a genetic mutation and, if so, where that mutation was. Sure enough when the results came in I found out I had an ALK genetic mutation. In other words, my cancer was solely caused by my genes deciding to not arrange correctly. The good news with an ALK mutation is there are medications that inhibit this incorrect formation and, therefore, stop the production of cancer cells. In addition, they will help treat the current tumors in the body. Now if you've seen a commercial for medication you know there is a downside and the big one is the body adapts to each medication over time. Overall it was nice to have a better understanding of what exactly I was dealing with. With this new information, Braden and I made the decision to visit MD Anderson in Houston to get a second opinion. To our relief they only confirmed what our Denver doctors were saying and referred us to a doctor at the University of Colorado - Denver. One of the top oncologists that specializes in ALK mutations is Dr. Camidge and he just so happens to be within 30 minutes of our home! Besides finding confirmation and further direction at MD Anderson they also shared information on fertility. MD Anderson let Braden and I know that carrying a child would not be possible. Moving forward I will always need to be on these cancer medications, and if I was to become pregnant it would basically result in a miscarriage. This information was just another blow to my chest! If you know me then you also know my desire to be a mom one day. I always felt growing up that God had put me on this earth to be a mom. It's a big part of why I was drawn to jobs like nannying and teaching. Now I am well aware this doesn't take away the option of still having a child, but it does change a lot! My mind started thinking, "Do I even want to have kids?, Will my health last?, Do Braden and I adopt or do we go another route?" Currently, I still don't know the answer to those questions, but we want to have options for when we are ready to tackle them. That is why when returning from Houston we not only made an appointment with Dr. Camidge, but also Dr. Dovey, a fertility doctor at UC Health.

On February 12, 2019, just over one week from the last of my 14 radiation treatments, I had both an appointment with Dr. Camidge and Dr. Dovey. At my appointment with Dr. Camidge I felt immediate relief. He came in with a level of confidence that was reassuring and far from arrogant. Not to mention he had a plan in place on how to proceed, but didn't overwhelm me with information. Above all else, he gave me hope! The way he spoke of cancer was as if it is a chronic disease rather than a death sentence. He assured me that it can be managed and people are living far longer than even a few years ago. With his encouragement and support, Braden and I moved forward with a fertility plan and agreed to start the medication Alectinib once done. Next came our appointment with Dr. Dovey where we expanded our new found knowledge even more. After our introduction to the process we decided to move forward with the freezing of my eggs. We aren't sure what the future holds, but know we want to have options in the coming years and honestly we didn't have the time to give it much thought. A few days later, after receiving an injection lesson, we started the process. Let me tell you it was quite the experience! I'll save details for a separate post, but I'll just say I love Braden. He became my nurse over the next two weeks, administering up to three injections in one day. We joked how anyone coming into our home would think we were on some hardcore drugs. Once we got through the challenging two weeks the doctors were able to retrieve a total of 35 eggs and 19 were mature enough to freeze (those are very good numbers)! The end of that process was a happy day for me!

As of today, I stand at almost three weeks being on Alectinib and of course it has come with its side effects. I officially have lost my ankles due to the swelling of my feet and am struggling with sleep. Part of the struggle is due to the muscle pains/soreness I am experiencing. There also have been other minor side effects that seem to come and go. Despite it all, I will take the problems if Alectinib is keeping my cancer stable and even treating the current tumors in my body as it's suppose to.

Well...that was a lot of information to throw out there, but I hope you were able to follow along! Please know I am always happy to answer questions that I'm aware some of you have. Not only will I continue to update with new information, I also hope to address other experiences in more detail. My hope is to support anyone in a similar situation. Until next week (I'm doing my best to update weekly), I only ask for prayers! I often get asked for specifics, those would be for a long ride on Alectinib (my body will eventually adapt to the medication) and that my body finds strength. It has been hard being so immobile with being such a naturally active person. My only other request is for anyone needing prayer to please reach out to me. Feel free to leave a comment below, to go to the 'Community' tab on my website, email, text...whatever works for you! It's nice to be able to take the focus off myself and put it on others. Plus the power of prayer is just something I want to be a part of! Oh and might I mention, that while I've felt trapped in this forest just waiting for what's about to attack me next. I am quickly reminded that I am not alone in that forest and in the end everything will be okay!

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Jun Yu Lee
Jun Yu Lee
Jul 10, 2019

Hi Tara, I'm very impressed with your positivity! My fiancé and I were supposed to be married this year on 28th Sep (what a coincidence!) but she was diagnosed with ALK lung cancer which has spread to her bone. It started from finding a tumor in a cyst near her ovary and after surgery, it took almost one month before the doctors were finally able to determine that it was a ALK mutation. She has been on Alectinib for a week and so far is coping well with it. I'm sorry to hear that the medicine is giving you so much side effects...

I will pray for you and I'm sure our Heavenly Father will have His beautiful plans for…

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