Thursday, November 16, 2017

Cruel November

My dear friend Tom Marsilje died this week. I spent the wee hours of the morning today re-reading some of the many texts, emails, and facebook messages we shared since 2015 when we "met" online.

In January of 2015, Tom went public with his Terminally Optimistic blog. He, my husband, and I met at an online support group called The Colon Club. That same month, I started a thread on The Colon Club pertaining to the clinical trial that I was hoping to get into. Tom was one of the first to reply to the thread. He was excited about the trial, and stated that he had been considering it a possibility for himself, if needed.

Our community on The Colon Club celebrated when Tom was filmed for part of Ken Burns' documentary, Emperor of All Maladies, because of his work on the cancer drug, LDK-378 (ceritinib). Fellow Colon Clubbers flung good-natured jabs at him after the show aired. He always responded with humor and grace. He took fighting cancer completely seriously, but he could always laugh at himself. It was one of his most endearing qualities.

We found common ground beyond our diagnoses. We both found sleep elusive, which made our time zone difference irrelevant; he had two young daughters (I had two young sons...plus three more); we both married engineers; and Tom had lived in Michigan until he left for grad school. We kept close tabs on each other. We joked about arranging a marriage (or two!) between his kids and mine. We previewed each other's blogs, and we prayed for each other often. More times than I can count, he was the first one I'd message whenever I had urgent (good or bad) news to share. He was always there.

After reading his first blog posts, I encouraged him to share his blog with another online community where I hung out, colontown. Initially, he told me he was "spread too thin to join another group". He asked if I would post his blog link there so that he wouldn't have to divide his attention with yet another outlet. I encouraged him (again) to join so that he could post it himself. He finally relented with one caveat: 
"I'll join as long as it's OK if I don't post too frequently."

Funny, Tom.

Tom not only joined the group, he transformed it. That spin-off page started with just three members, myself included, who had participated in a clinical trial. We patients were there to spread awareness and answer questions from other colontown members about the clinical trials we had joined. When Tom came onboard, he turbo-charged that space with unending links to more and more clinical trials almost daily. With the help of a mutual friend and advocate, Maia, plus a couple of research scientists--another dear friend, Danielle Maatouk, among them--who he recruited to help, even more patients would be reached. This Facebook page has become a resource unlike any other in the world. Other trial pages spun off from this first one; each bears Tom's name in tribute to him for his zeal for educating patients about clinical trials.

I had the honor of meeting Tom in person for the first time in July, 2016. He was enjoying what he called a cannonball life, but also investigating potential treatment options in Michigan. My house was a short car trip from his destination, so my husband threw some steaks on the grill in anticipation of his visit. We discussed science and cancer and life. We laughed like we had known each other all our lives.

Too often Tom and I grieved when one after another of our mutual friends would die. Several died last November. We both agreed that November was the cruelest month. And now it has taken Tom, too.

Rest in Peace, dear Tom. I hope that the friends we knew were there to greet you. I hope that in the other world, you have found the knowledge you sought for so fervently your entire adult life. I wish that we who are left now without you could hear you whisper what you've learned.

I will think of you often, tears streaming at times, but always with your words, "To Life" at the forefront of my mind. You gave so much, and worked so hard. Be at rest now, and live forever with God, the Author of life.

Friends forever.

Wednesday, August 2, 2017

Follow Up 12

Once again, I traveled to NIH in Bethesda for blood work and scans. All is well--I am still NED. What's more, the attending physician (at long last) has extended my next visit to six months out instead of three. Hurray!

Life is GOOD and health is a tremendous gift that I pray I will never again take for granted.




Saturday, April 15, 2017

Eleventh Follow-Up

Follow-up eleven (what?!) happened earlier this week. No cancer was found on any scan. On the seventh of this month I passed the one year NED mark. This amazes me!


BEST PART of the visit was eating ice cream with friends.

WORST PART was saying good-bye to my dear former fellow. The gravity of the event hasn't sunk in yet. I don't think it will until the next time I go back and he isn't there.

Today I got to experience one of the milestones that cancer often steals from families. I witnessed my oldest child receive an award from the Honors College at her university. I remember well the day she started her college career--it was the same day that I was told, "You have cancer." I wondered then if I'd see her graduate. I wondered if my disease would interrupt her education. I so did not want that to happen. I thank God that she did such excellent work, and that I am here (!!!) to write about it.

Easter Sunday is only a few hours away. I cannot wait to celebrate!
He is risen, just as He said. Alleluia! Alleluia!

Sunday, February 5, 2017

NIH on NBC

Joan Lunden visted the National Institutes of Health early in January. She interviewed me and The Guy (together, because I am a big chicken) on my 10th follow-up post TIL therapy.

Here's the Today Show segment (thanks, Maia!):


apheresis. It's not as fun as it looks.

This web page answers some questions about TIL therapy. It includes a link (see item 5) to start the application process too!

Here's a promo clip for the sake of posterity:


Monday, December 12, 2016

Grateful

Welcome to the 100th post.
Today is the Feast Day of Our Lady of Guadalupe! I have a special devotion to Mary under that title. The words she spoke to Juan Diego in 1531 gave me courage in 2014, when I learned that chemo had failed me. "Do not fear this sickness...," she said to Juan, referring to his uncle. I believe those words are meant for all of us.

I am humbled and honestly a bit overwhelmed by the attention that is coming my way because of the recent article in the NEJM. Other outlets have picked up the story, and it has been a little crazy for the past couple of days.

I am thrilled for the scientists and other medical staff whose work has been recognized in this public way. My greatest hope is that they will continue to see more and more successes in immunotherapy. The men and women who worked on my case are much more deserving of the kindness and attention that I am now receiving--I was just trying to stay alive, as any one of us would do. The authors of the NEJM article--and many others who were not named--have my ongoing and deep respect. In truth they had it long before the results of my case were known to anyone--even them.

I am so grateful to everyone who prayed for me, and especially those who shared the story with others and asked them to pray, too. In the Christmas letter that I wrote in 2014, just after learning that my case was considered terminal, I wrote:

I joyfully anticipate the day when we'll all "be amazed and glorifying God", saying together, just as the evangelist recounted, “We have never seen anything like this.”  Mark 2:12

Our Lady of Guadalupe, pray for us.

Thursday, November 17, 2016

Follow-up #9

My scans were good! The radiology report included the word, "unremarkable" a total of five times. That is a record number of times for me.

When a radiologist deems an organ "unremarkable" it means that no evidence of injury or disease is seen on the scan. It is one of those DoctorSpeak words that mean something completely different to the uninitiated.

Question: Who wants to be "unremarkable"

Answer: Cancer patients

Overshadowing this visit, sadly, was news that my friend and fellow cancer patient, D., had passed away suddenly. We had made plans to meet at NIH this week. Our visits overlapped, just as they had last winter. We were in contact weekly--often daily--for over a year. It didn't make sense. She was supposed to be visiting NIH for harvest surgery and scans...

Incomprehensible.

Consistent with the roller-coaster theme of this visit (the highs were as extreme as the lows) The Guy met with me at my clinic appointment. He confirmed that the New England Journal of Medicine will be publishing my case. He also told me that I am "an historic figure in medicine".

Incomprehensible.

Also this trip, I said good-bye to my dear Lab Guru. He has exhausted every extension that The Guy could arrange. I am confident that he will continue to do great things in his very own lab, just as he did during his time at NIH. I look forward to the opportunity to visit his new digs one day (and hopefully not for the purpose of apheresis).

Finally, a story of hope. Tonight, a friend on 3NW at NIH awaits her TIL with sheer joy (and maybe some fatigue after the conditioning chemo). It will happen soon! I pray she sees success. I believe that she will!

Wednesday, August 10, 2016

Follow-Up #8

We are home from another follow-up at NIH. It was all good news! The clinic meeting, for the first time, was boring. My scans showed nothing new, and nothing growing. I won't be scanned again for four months. Woo! I can live (literally, ha!) with boring follow-ups.

A highlight of this visit:  I got to meet a fellow patient who became a fast friend. I have high hopes for her, for great success with this trial. She's as curious (maybe moreso!) as I am about all things TIL, and our visit slipped away too quickly. We will meet again!

News:  The Lab Guru has submitted an article about my case to a journal. I hope to have more news on that later.

Another highlight: Visiting with my Top 3. Two docs, and a nurse. So happy they were all available!

If you're interested in enrolling in the TIL trial, the link is here.
A recent post on how cell therapy works is here.


Under "Highlights" on the right side bar, you'll find a link labeled "Key Posts" which can serve as a short-cut to navigating the blog for particular steps in my cancer Riot.