Something really exciting happened this week as far as my cancer treatment goes and what our next steps look like. Buckle your seat belts because this is the story of Dr. Lenz and how I'm about to lose half my liver to him and his friend, Dr. Genyk!
About a month before my cancer came back, Scott was reading the Alumni magazine from USC and there was an article on Dr. Heinz-Josef Lenz, who is a leading colon cancer oncologist. It caught his eye because of my cancer past and because Dr. Lenz researched, categorized, and treated cancer patients based on the genetic make-up of their tumors, which is pretty exciting and impressive stuff. Jumping forward to being diagnosed for the 2nd time in January, Scott received an email from a completely different publication with another article about Dr. Lenz. He came to me and said, "I know you love your oncologist but I don't think this is by chance." He felt very strongly we needed to go see him. The soonest we could get in was more than a month away. In the 3 weeks after I was first told that my cancer LOOKED like it was back, it spread quickly and I was advised to start chemo immediately. I did two chemo treatments before I saw Dr. Lenz, which knocked me out of two trials he had set for me. He told me that things sometimes happen for a reason and that the treatment my oncologist Dr Robin Obenchain had put me on was probably the best for me. If my CEA went up after the next blood test he had another trial for me. If it went down the treatment was working. Sure enough my CEA went from 5.8 to 3.9.
Dr. Lenz and I
Typical Mandy moment- I told Dr Lenz I would not let him forget who I was because I needed his research. I went back for a symposium he had and was impressed with the many oncologists from around the world who came to hear what he had to say. In summary, we spent a long time looking into this awesome guy doing awesome things for colon cancer and letting him know that at some point, we'd end up on his docket. On top of that, I met Becky Keller who is the woman who runs the WunderGlo foundation that partners with Dr. Lenz in raising money for colon cancer research.
Little did I know what a big part of my life Becky would be.
Me, surprised Santa, and Becky
Current day, Scott and I caught a plan to Burbank late Sunday night. Becky from WunderGlo was nice enough to pick us up Monday morning and cart us around all day from appointment to appointment then dropping us off at the Airport that night.
That's just the kind of gal she is - thanks Becky!!
That's just the kind of gal she is - thanks Becky!!
First stop was an appointment with Dr Genyk, the liver transplant surgeon. I am in awe of his skills. He not only does liver transplants and resections and all kinds of abdominal oncology stuff but his talents can be found working at Los Angeles Children's hospital on preemie babies! This guy works on not just babies, but the tiniest and most tender ones. How completely awesome is that?
The best news is that he is confident that my surgery can be done the week of January 14th, which in the cancer world is SOON. It also means that I'll be able to join Scott in Thailand at the beginning of the new year, which I was really hoping for!
Anyone been to Thailand?? Tell me what you loved!
I have to have an MRI done prior to the surgery and I was worried that maybe those results could affect it. I asked Dr. Genyk and he said, "the MRI just makes me smarter." He said it was a joke... but improving the information for the team responsible for cutting your liver open always seems like a good idea. Right? The surgery will likely remove about 50% of my liver and spleen... Which is a lot.
But I have to keep in mind that the liver is a really cool organ that regenerates.
Slowly, but it definitely regenerates.... Remember, that Mandy.
Anyone been to Thailand?? Tell me what you loved!
I have to have an MRI done prior to the surgery and I was worried that maybe those results could affect it. I asked Dr. Genyk and he said, "the MRI just makes me smarter." He said it was a joke... but improving the information for the team responsible for cutting your liver open always seems like a good idea. Right? The surgery will likely remove about 50% of my liver and spleen... Which is a lot.
But I have to keep in mind that the liver is a really cool organ that regenerates.
Slowly, but it definitely regenerates.... Remember, that Mandy.
Next stop was to sign my life away (just kidding). It was actually to agree to participate in a research study for the mouse version of Amanda Bebak! What they'll do is take some of my tumor and place it in little mouse AB then treat the tumor to assess what will bring about success. Go little mouse AB!! Be the mouse that discovers the newest and most effective treatment for colon cancer patients everywhere!
Next was an MRI with Eovist. Not so much fun. The MRI takes about an hour. The Eovist is a contrast that gives a more clarified picture of the liver- again, clarity and extra info always seems like good ideas. Anyone who has had an MRI of the abdomen knows hanging out in that enclosed tube making super loud noises isn't a first choice to pass the time. They could at least play some loud music, right? How hard do we think it would be to make an MRI that could straw feed you a Pina Colada and play podcasts? Really though - MRI machines are amazing, amazing things.
Lastly, but very joyfully, we went to dinner. Fasting for 6 hours for an MRI makes you the very truest version of hangry! We ran into Dr Genyk in the parking lot as he was coming back from the children's hospital - which to me was just a testament of the kind of guy who's got my liver in his hands, and it was so assuring to have that sign.
It's strange but the best Christmas gift that I get to have this year, and possibly ever, is a ginormous t-cut across my abdomen to remove 50% of my liver, splenectomy, and maybe some cyber surgery for good measure- you know, while we're at it :)
What a way to look back on and end this whole crazy year. After the process of looking into Dr. Lenz, not being eligible for his service due to my cancer blowing up in my body, and now coming back full circle with so much hope and excitement over not only a plan, but a plan that feels so solid. Just think, January 2018 I was told my cancer is back but maybe January 2019 will be the month I find out I am (THIS CLOSE) to all the cancer being gone from my body. I could care less about needing to do chemo on Christmas Day this year, because if anything I'm reminded of the incredible gift I have of being here, having gone through the treatments I have, and being able to work with such incredible people. Christmas is about so much more than the day, I've learned. It's about keeping the Christmas spirit in your heart and spreading it as wide and as long as it can go. Our church is such a great example of this with their 'Light the World' initiative. Cancer might seem like such an unlikely circumstance for light and hope but I have found the opposite to be true, and it makes my heart so grateful. I've felt strongly throughout my cancer journey and particularly as of late about the importance of having gratitude, especially in the face of health issues. It's so easy to start letting the feelings of bitterness overcome you. Whether it's your own health issues or family members - which is another challenge my siblings and I have been facing and learning through with my own Dad, who's currently in hospice. It's so hard to face head on the fact that you do not have control over outcomes, and sometimes even harder to realize the thing you need to control is your own attitude. Rarely is that not a challenge. But I've learned that being bitter would only separate me from the people that I love. Being angry can only increase the loneliness and the feelings of powerlessness.
It's strange but the best Christmas gift that I get to have this year, and possibly ever, is a ginormous t-cut across my abdomen to remove 50% of my liver, splenectomy, and maybe some cyber surgery for good measure- you know, while we're at it :)
What a way to look back on and end this whole crazy year. After the process of looking into Dr. Lenz, not being eligible for his service due to my cancer blowing up in my body, and now coming back full circle with so much hope and excitement over not only a plan, but a plan that feels so solid. Just think, January 2018 I was told my cancer is back but maybe January 2019 will be the month I find out I am (THIS CLOSE) to all the cancer being gone from my body. I could care less about needing to do chemo on Christmas Day this year, because if anything I'm reminded of the incredible gift I have of being here, having gone through the treatments I have, and being able to work with such incredible people. Christmas is about so much more than the day, I've learned. It's about keeping the Christmas spirit in your heart and spreading it as wide and as long as it can go. Our church is such a great example of this with their 'Light the World' initiative. Cancer might seem like such an unlikely circumstance for light and hope but I have found the opposite to be true, and it makes my heart so grateful. I've felt strongly throughout my cancer journey and particularly as of late about the importance of having gratitude, especially in the face of health issues. It's so easy to start letting the feelings of bitterness overcome you. Whether it's your own health issues or family members - which is another challenge my siblings and I have been facing and learning through with my own Dad, who's currently in hospice. It's so hard to face head on the fact that you do not have control over outcomes, and sometimes even harder to realize the thing you need to control is your own attitude. Rarely is that not a challenge. But I've learned that being bitter would only separate me from the people that I love. Being angry can only increase the loneliness and the feelings of powerlessness.
I have been offended, I have been hurt and I have held onto it.
The truth is that everyone has their own kind of cancer. Hurt that has festered, a tendency to doubt instead of having faith- the number of physical and emotional struggles we face is endless. There are so many ways to start the healing process and it's personal for everyone's mind and soul - I'm not here to tell you how to cure your cancer, I'm having enough of a time with my own!- but the most important thing is starting NOW.
We had a guest speaker at our church devotional a couple of weeks ago, her name is Joy D. Jones (she gave another amazing talk, which you can watch/read here) and she is wonderful. She said something that I found so important, which is "Don't delay your progression." Do your best to not waste any time holding yourself back from the happiness and peace that is available. From the gratitude you could feel. I have such a wonderful collection of friends from all different walks of life, faiths, and parts of the world. I love and respect all of them for and our because of our differences, but at this time of year it's so important to me that the people in my life (and strangers on the internet) know that my greatest source of strength and peace is Jesus Christ. I know Him as my Savior and I believe He is the Savior of the world. The joy of Christmas is the joy of Christ, and I have so much to be grateful to Him for.
My family. My faith. My health, at whatever level I've got it.
The hope I have in the future and in the people in my life.
Merry Christmas to all of you wonderful people. I wish you all the happiness and joy of the season along with added strength to face the mountains in your life.
xo
Mandy
p.s. I love a good lights display. Enjoy this video of beautiful lights at the Mesa AZ Temple!
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