Permission to Dream
A Rare Journey
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3y ago
 Last year, after my diagnosis, I had to rethink my perfect life. Before this I had many dreams for what I thought would be a part of my long and rich human existence; some unformed, some more specific and clear, some dearly held, others unattended to. My biggest struggle, when facing my diagnosis and prognosis, did not involve the challenges of the potentially grueling treatments and symptoms that lie ahead. It was that I was only 31 years old and that so many of these dreams had as yet gone, and would most likely go, unrealized. Overcoming this struggle meant rethinking my dreams. That ..read more
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Cheers to Checkpoint Inhibitors
A Rare Journey
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3y ago
Today marks one year since I began immunotherapy and was given a chance at a longer life. In the days leading up to this I was navigating the murky waters of some pretty scary news. The biopsy that I pushed for had come back positive for melanoma. The rigorous biochemo therapy treatment that I had just completed had not prevented a re-occurrence and I was officially at an advanced stage of cancer. I had returned to MDACC in Houston to discuss the next plan and learned that not only was it back but the tumor was dangerously encasing an main artery in my pelvis and therefore inoperable. Also ..read more
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April Health Update
A Rare Journey
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3y ago
 Many of you have been asking me for a health update and I have been waiting until I actually have something to report.  I've been feeling somewhat guilty about my lack of writing but I'm very happy to report this is mostly due to my gradual return to life and my academic and other writing projects. However, I now do have something to report! But I will keep this brief. I had a new set of scans this past week. It's a month earlier than planned because I was having a minor increase in pain that didn't fit with the steady pace of healing from surgery three months ago. I had two scans ..read more
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A New Chapter
A Rare Journey
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3y ago
A new treatment plan: A couple of days ago I had my post op visit with my surgeons and a treatment planning visit with my medical oncologist at MDACC. It had been 6 weeks since my surgery, 8 weeks since my last nivolumab treatment, and I had new MRI and CT scans. The visit went about as well as any I’ve ever had. Scans showed nothing more than changes consistent with my recent surgery, TIL harvested from the small active area of the tumor actually grew in the lab and is sitting in the MDACC freezer and can be used for treatment down the road. I was also told by my oncologists that I was ..read more
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A Cold War
A Rare Journey
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3y ago
 It was one year ago today that I got a call from my OBGYNs office requesting that I come in immediately to speak with my doctor. Living far away I assured them that I would not be able to make the drive before the close of business. They told me to come any way. It was then, for the first time, that I realized there might be something seriously wrong. That was the day I was diagnosed with mucosal melanoma. To say that a lot has happened in the past year is a gross understatement. Despite the odds, however, after many scans, biopsies, failed treatments, surgeries, scars and side effects I ..read more
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The war rages on
A Rare Journey
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3y ago
The battle is over. My body is waking back up after being put to sleep, the pain that followed the violence is subsiding and my wounds are softening and healing. As I get back to my normal diet and activities and return to myself I can now afford the mental energy to reflect back on what has happened here and reach back out to all of you.  I went into surgery on Wednesday in the midst of a heavy storm. The burden of the clouds was hastily released onto the city and the unprepared roadways swelled with the rain water. We played cards to still our nerves as we waited for all the members ..read more
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Pre op visits and surgical plan
A Rare Journey
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3y ago
I'm finally rested after two busy days of consults and preop visits for my upcoming node dissection on 1/18. Whew! What a whirlwind, both physically and emotionally.  Overall, the team is ready to go and there are specialists in place for anything foreseeable that might come up, which should allow for a good resection with no hesitation to remove or blast things as needed. This is all barring any extensive disease not seen on the scans when they do the initial scope.   I met with:  (1) Urology, who will be putting in stents to help visualize and protect my ureter during ..read more
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We are different, but all the same
A Rare Journey
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3y ago
An article was just released today in the Annals of Oncology that looked back at a (relatively) large group of individuals with Mucosal Melanoma (MM). The were attempting to answer the question of how different MM is based on the location of the body it beginnings in. When grouped together, you have sinonasal, reproductive/urinary tract, and gastrointestinal "primaries" (or first tumors). The findings were that they are mostly the same and can, therefore, be reasonably studied as a group. This is good news for research (power in numbers) and not surprising to me. I have been a part of an on ..read more
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Windows and Doors
A Rare Journey
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3y ago
  A major lesson I have been digesting over the past few weeks that nothing is black and white, not even life and death. After being diagnosed in January and pouring over all the research on mucosal melanoma and its treatment that I could get my hands on, I developed what I considered to be a pretty clear picture of which events meant that I would be kept safe within the fragile confines of ‘being alive’ and which events signaled my imminent expulsion into the unknown world outside of that. Since that time, I have gotten something qualifying for my ‘expulsion is imminent’ news more tha ..read more
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Giving Tuesday
A Rare Journey
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3y ago
 The holiday season has begun and attention is shifting from the busyness of life to sharing and giving and the holiday spirit. I want to take advantage of this opportunity on #givingtuesday to share with you a project that I'm working on in collaboration with the Melanoma Research Foundation (MRF).  As I've shared with you in the past, part of the difficulty with my specific subtype of melanoma is that so little is known about it. It's rare and the way that it can show up is unexpected. Many health care providers at the ground floor, first contact level of care don't know about ..read more
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