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Hope and Patience

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Posted 2020-02-14T03:44:57Z

Monitor and Adjust

In January of each school year, I had the routine of asking the different stakeholder groups, on behalf of the administration, for feedback. This would provide the opportunity for us to monitor and make any mid-year adjustments that were needed. This January, I also engaged in getting feedback to monitor and adjust. Only this time, it was my body giving explicit input after the 1/10 combination immunotherapy infusion. My body had a high toxic response and we needed to adjust our plan. The good news is that the combo immunotherapy awoke my immune system, which is the goal of immunotherapy: to activate an immune system to attack cancer. The unfortunate news is that it attacked my liver and not the cancer, so we quickly had to medicate with high dose steroids to resolve this side effect.

During one of the multiple ER visits (which helped to determine what was making me so sick), scans showed a swelling of cancer growth in my spleen. Additional scans were taken last week, 2.5 weeks after this ER visit, and these scans showed that this aggressive cancer had commanded a new presence in both my liver and lungs (in addition to my spleen). After monitoring this progress, we now have adjusted my treatment plan.

Houston, we have a problem:

Our trip to MD Anderson Cancer Center in Houston was delayed a week until my side effects stabilized. This proved to be a pivotal trip for my health care.

We met with a couple doctors, one being an expert in melanoma and immunology with the intent to get in line for the TIL clinical trial. This is an incredible procedure where t-cells are harvested from a tumor site, grown in a lab for 22 days and then reinfused into the body. This is a lengthy and ICU in-patient process. There is a waiting period for a medical review to even qualify for this clinical trial and it is complex with inclusion and exclusion criteria.

Mike and I were captivated by the expert melanoma and immunology oncologist’s review of my case and his assessment of what my pathway should be to move forward with our shared objective: putting this cancer into remission. Some medical oncologists would say that metastatic melanoma at stage four can no longer have a curative intent, the goal is life extension. Not this doctor, and we’re in his camp. He determined my cancer is too fast growing and the clinical trial would be unsafe for me to do at this time. We will consider it if needed, and we are hoping that’s not the case. There is a second targeted therapy (chemo) medication available. We did not know this would even be an option for me given my near fatal experience with the other targeted therapy drug in the Fall. Targeted therapy is prescribed for melanoma patients who have a BRAF mutation, which is about 50% of melanoma patients. This basically means an “on/off” switch is stuck in the “on” position for the melanoma to grow. Targeted therapy will never put cancer into remission; it will only buy time as a blocker to temporarily turn the switch “off” with the average of 12 months before the cancer finds a way around the blocker. The goal to get to remission is to find an immunotherapy that can work to obliterate the cancer once and for all during this time. Targeted therapy was FDA approved in 2018. I see miracles and angels everywhere, and I am lucky that it’s 2020 so I can access this medication. After initial insurance denial again (insurance is a complete racket), I was approved for this fourth treatment plan. The doctor in Houston spoke about fear, and that fear can’t get in the way of the hope he has for me to overcome this aggressive disease. So, with that, I am now 10 days into this round of daily targeted therapy treatment. So far, it’s going well. There are precautions in place to closely monitor the side effects while they unfold.

We are pleased this melanoma and immunology oncologist from MD Anderson will continue to co-manage my care while I am treated with this new plan. He will work with a medical oncologist and team we like at SCCA. We are hopeful. I wonder at times if it’s just denial of my current health situation by focusing on hope, and then I think, being hopeful can only help me and my family on this path and could even have a positive influence on the outcome. With that, we are focused on being hopeful.

Gracie and Benjamin were less than excited for Mike and my trip to Houston. It wasn’t until it emerged that they felt it was unfair that we got airplane cookies and they didn’t, that we figured we’d be able to mitigate the situation. Not only did they get airplane cookies, both being skilled negotiators, Benjamin also landed chewing gum and Gracie worked out getting some gummies. They were surprised with wing pins to boot. You can tell who runs the show in our household. My parents are angels in our lives and our kids had an epic slumber party at my parent’s house. I’m pretty sure my kids were the only ones who slept the entire time.

Prayer and positive energy:

People have been sharing with me either in person, over text, or through the mail, that they have been praying for me. This is an overwhelming gesture of love and kindness; I am humbled. I know there are people praying for me who I don’t even know. Since October, I have received over 50 postcards from a church in Madison, Georgia. This is a church that Mike’s cousin and his family attends. Every time I receive a postcard, I get emotional. There are people on the other side of our country, with perhaps different cultural norms and different viewpoints than mine in Seattle (they don’t know me at all), and they are spending time praying for me and writing to me anyway. There are so many good people in this world. Every time I hear from someone that they are praying for me or sending positive energy my way, I feel stronger, calmer, and quite frankly, I believe in what they are saying. I have no doubt we are all connected, and I am feeling the powers of what happens when a community of people focus positive energy in the same direction.

Sacrament of Healing:

A neighbor friend and her family have been praying for me. It came to my friend and her mom in a conversation that it was necessary and timely that I received the Sacrament of Healing. This was during a very symptomatic and sick time for me about 2.5 weeks ago. Within days, Fr. John, the Jesuit priest at the church we attend and Gracie’s school, came to our home and gave me the Sacrament of Healing. I was surrounded by Mike, my parents, my brother and two neighbor friends. This experience gave my entire family strength for this continued journey. The timing was miraculous as we all needed this support and we needed it then. The unsung heroes of cancer are the family and friends who are so greatly impacted and selfless during a time of focusing on their loved one’s healing. This experience gave us a calm strength and helped me to connect with my inner fire for healing. I am reminded of this meaningful experience by a relic that was lent to me during this Sacrament of Healing. This relic which hangs around my neck has a Mary Miraculous Metal inside. I can honestly say that I have the first Jesuit Saints (including Gonzaga!) with me both literally and figuratively.

Appreciation:

I continue to be amazed by the generosity and support for our entire family. There may still be monitoring and adjusting to do as part of this time sensitive cancer ride, and I have the strength and inner fire to burn bright right now, much in thanks to all of you.

 

 

 

 

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