Sometimes a day is best described in photos rather than words. Today is one of those days.
Back in early August 2017, I had my two chest catheters removed during one of my many hospital visits during the summer. While insertion of both devices was done under twilight anesthesia, the medical professionals who arrived at my room explained that lidocaine injections would hurt more than the actual extraction – so no local anesthesia would be used.
I had two different catheters in my body. The first one was an Aspira® catheter, which was in my body approximately four months. The second was a PleurX® catheter that was used for a much shorter period.
Since the removal of both catheters, I’ve had issues with the area between where the Aspira catheter was inserted and the exit site (see Figure 1). The area was often sore and red, which got gradually worse during the past two months. This week, the exit site became raised and fluid started oozing from the previously healed exit incision.
To help keep the catheter tube in place, a retention cuff is used to facilitate tissue in-growth (see Figure 2). Accordingly, the catheter must be surgically removed by first freeing the cuff from the tissue, then by pulling the catheter out gently and smoothly.
Yesterday, an ultrasound imaging procedure revealed that the Aspira cuff was left behind and was the source of my discomfort. There was no surgical procedure used in the removal of my Aspira catheter back in August and therefore the cuff, which became quite attached to my body, didn’t want to leave.
Fortunately, I was able to see a surgical team late yesterday as well. After assessing the situation, they were able squeeze me in for a procedure. First, they numbed the area with lidocaine injections and then retrieved the rogue Aspira cuff. It was a quick procedure.
I’ll have plenty of time to rest, as my blood counts were once again too low for chemotherapy this week. Next week is my normal week off from chemo as well, so my next round of therapy should be on November 7th.
When I first started seriously writing my memoir in January 2017, I was in a bit of rush to get it completed. At the time, my disease outlook was less than favorable and I didn’t know how much time I would have to write. Somehow, I was able to complete and publish “A Walk with Purpose: Memoir of a Bioentrepreneur” before the end of April that same year.
Since then, my cancer has responded well to the current chemotherapy regimen. Six-months after publishing my book things are still stable — although I’m living from CT scan to CT scan.
After stepping away from my book for a while, I recently took the time to reread it with a fresh set of eyes. Besides, a lot has transpired over the last six-months. With the benefit of more time, I sought to revise some sections and remove others. I also updated the ending of the story to reflect my current prognosis.
If you have purchased an eBook version of the novel in the past, the new version is now available via Amazon at no cost. Simply update the content on your “Manage Your Content and Devices” page (www.amazon.com/gp/digital/fiona/manage).
Customers who download eBooks through Kindle Unlimited will receive the updated content as long as they haven’t returned the Kindle Unlimited borrow before the content update is initiated.
At this time, customers who download eBooks through Kindle Owners’ Lending Library don’t receive updated content.
Going forward, anyone who purchases either the paperback or eBook version will receive only the new, updated copy. To verify whether or not you are viewing the new/updated version, look for the text “5.1.101817” at the end of the copyright page (see red circle in image example).
While it’s not a complete rewrite, there are substantial updates throughout for those considering whether or not to reread the book.
Earlier this week, I had my periodic CT scan to determine whether or not the chemotherapy I’ve been receiving is continuing to work. I just received word from MSKCC moments ago that indeed many of the tumors continued to shrink compared to my last imaging procedure in August (which showed a decrease in tumor size almost across the board). Importantly, there weren’t any new lung metastasis.
Clearly, this is very good news. In a perfect world, one would like to see all the tumors completely disappear. That would be highly unusual, so I will gladly accept serial decreases in the tumors from period-to-period.
This coming Tuesday, I should receive my chemotherapy doublet (provided that my blood counts are sufficient).
That’s all for now…short and sweet…as I am going to hug my family and enjoy the weekend.
A couple of weeks ago, I received an unsolicited message on LinkedIn from a young woman we’ll call “Mary” for the sake of anonymity. Like me, Mary is extremely passionate about the biotechnology industry and she works as a scientist in the lab at a local company.
In her message, Mary stated that she recently read my memoir and found the story to be moving. She offered to meet for coffee and expressed an interest in hearing more about my career path. Knowing that I’m going through chemotherapy, she completely understood if I wasn’t up for meeting, but stated that she “couldn’t pass up the opportunity to ask, as she was so inspired by my work.”
How do you say “no” to that? It isn’t every day that a fan reaches out to me requesting to meet (in fact, this was a first), so I was quite flattered. We settled on a date and time to meet for coffee in downtown Yardley, PA that worked for our respective schedules.
I informed my family about the upcoming meeting with Mary and they reacted as one would expect. Who is this person? Why does she want to meet? She could be a homicidal maniac, etc. Obviously, they were just being protective and looking out for my best interests. After all, I’ll admit that my mind wandered ever so briefly to Stephen King’s 1987 novel Misery about a psychotic fan who holds an author captive and forces him to write her stories.
I arrived at the coffee shop first and attempted the daunting task of identifying Mary solely on the basis of her LinkedIn profile picture. Instead, she instantly recognized me (not too difficult given my recent “bald head and bold eyeglass” look) and came over to say hello. I admit to a certain sense of relief that she looked nothing like Kathy Bates who played the psychopathic Annie Wilkes in the film version of Misery.
We ordered drinks and sat at a quiet table in the back of the shop. What ensued was a lovely conversation about my background and our mutual interest in the exciting biotechnology industry. It was clear that we were both bitten by the biotechnology bug and it was nice to exchange thoughts and perspectives about the field.
When asked, Mary shared that she was introduced to my memoir by a college professor at a prestigious university where she is participating in an online degree program. Apparently, the professor suggested the book to his class and others were reading it as well.
My ego sufficiently bloated, I asked Mary to provide me with the professor’s contact information so that I could at least thank him for recommending my book, which she did. I sent out the note without even making the connection that the professor and I had several prior exchanges on social media and that he was also a research scientist at the National Institutes of Health (NIH). He promptly responded and reminded me of the connection. What a small world after all…
The meeting with Mary at the coffeehouse lasted an hour and a half, but it went by quickly and felt much shorter. However, the high from interacting with a “fan” lasted a lot longer and inspired me to get out more often and meet with others who have an interest in my story. This could be via book signings, meeting with book groups, speaking at events, etc.
When I wrote A Walk with Purpose: Memoir of a Bioentrepreneur, it was with a historical perspective of my life’s journey. But I’m continually amazed to see that my walk and purpose are not yet complete. For example, at first I was humbled every time I learned that my book inspired a parent to reconsider vaccinating their child against human papillomavirus (HPV). Now, through my brief exchange with Mary, I have also witnessed how the book can ignite and/or reinforce one’s interest in the exciting field of biotechnology.
So, thank you Mary…and all of the others who have taken the time to share how my book has positively influenced them. Each of you inspire me to continue my walk with purpose!