Continuing with Chemotherapy (and Blogging)

In my prior post, I referenced that more and more terminal cancer patients are placing their most private, personal journeys in this utmost public, impersonal domain we call the Internet. Among the blogs about fashion, food, home design, travel, and others, numerous blogs about severe disease and dying have appeared in recent years.

Personally, I find that writing a cancer blog is cathartic – and I’ve been doing it for more than two years now. It’s a great way to share updates and information quickly and efficiently to others who are interested in your health. Blogs and participation in other online patient forums also make the experiences of cancer illness publicly visible, provide alternative voices to that of the medical expertise, and challenge the traditional patient–doctor relations[1]. What a truly remarkable era for patient advocacy.

But maintaining open and honest communication with your health professionals is an important part of the cancer patient’s care. Doctors, nurses and patients work best together when they can talk honestly and openly with one another. In this regard, it is important that patients avoid blogging or posting anything on social media that could jeopardize this relationship. When in doubt, discuss material and/or images that you plan on blogging with them in advance – especially when the information pertains to participation in an ongoing clinical trial where sensitivities to confidential information may exist.

Michael Becker and David G. Pfister, MD

So far, healthcare professionals have generally embraced my public visibility. For example, I first met my incredible medical oncologist, Dr. David G. Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), in December 2015. Since that time, I published my memoir, more than 75 cancer blog posts, and three opinion editorials in various media outlets. It’s probably safe to say that I’ve been among his more “uniquely” visible patients during the past two years. But Dr. Pfister and others at MSKCC, along with my team at the National Institutes of Health (NIH), have been largely accepting and supportive of my blog, book and photojournalism. And, for the first time, my wife Lorie was even able to snap a quick photo of me with Dr. Pfister this week that I will treasure.

On the topic of this week’s appointment, we reviewed the CT scan results from last Friday’s imaging session. As updated briefly via social media, the results were good – stable disease (there were no new sites of disease and the existing tumors stayed about the same size from the prior scan). Growth in the existing tumors and/or new sites of disease would indicate disease progression and likely necessitate switching therapies. Since that wasn’t the case, and since I’ve handled chemo well with no neuropathy or need for growth factors, the plan is to continue with my current chemotherapy regimen (four-week cycles starting with carboplatin and paclitaxel on week one, paclitaxel only for week two, and then no treatment for weeks three and four to allow blood counts to recover) for two more cycles and then do another CT scan around the second week of April 2018.

After the meeting with Dr. Pfister, I started my eighth cycle of this chemo regimen and was back home by late afternoon. The purpose of this treatment is palliative – to keep the tumors in my lungs and other organs from growing to a point where they cause pain, breathing difficulty, and/or other issues. It is different from care to cure your illness, called curative treatment.

When treatment is palliative, some patients may feel uncomfortable asking their doctor, “How long do you think I have to live?” The truth is that this question is often uncomfortable for doctors too. Nonetheless, it is a question on the mind of many terminal cancer patients – including me.

Every patient is different and a statistical prognosis is just an estimate, not a firm prediction. For example, last summer I was in very bad shape (two chest tubes, progressive disease, blood clot and bleeding issues, rapid heart rate requiring stay in the ICU, etc.). The prognosis at that time was grim and I wasn’t expected to live more than a few months.

But, effective treatments can sometimes dramatically improve a person’s well-being and even survival. After starting chemotherapy again, the cancer regressed and both chest tubes were removed as the fluid in my lung cleared. My heart rate has been stable since starting medication. I celebrated my birthday, Megan’s birthday, holidays, and welcomed the New Year. It’s now likely that I will celebrate Lorie and Rosie’s birthdays next month and even our 26th wedding anniversary in March. I have been given additional precious time.

My disease is still likely incurable and the current statistical prognosis indicates a median life expectancy of less than one year. I suffer from chronic fatigue, shortness of breath, anxiety, depression and other issues that negatively impact my quality of life. Knowing my prognosis, however, is helpful for guiding important personal plans and life decisions.

I believe that blogging about life with terminal illness can offer unique insights into how it is to live with disease and to face the final phase of life. Hidden away and sequestered, removed from everyday experience, death has made a mediated return to the public sphere through digital and networked media[2].

References:

[1] Andersson Y. (2017 Jan 1). Blogs and the Art of Dying: Blogging With, and About, Severe Cancer in Late Modern Swedish Society. Omega (Westport).

[2] Lagerkvist, A. (2013). New Memory Cultures and Death: Existential Security in the Digital Memory Ecology. Thanatos, 2(2), pp. 1-17.

First Chemo of 2018

Early this morning, my youngest daughter Megan and I arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) to start round number seven of my current chemotherapy regimen (a combination of carboplatin and paclitaxel). What a fun way to welcome 2018!

Each treatment appointment is preceded by a blood test to look at the levels of various components (red blood cells, white blood cells, platelets, electrolytes, etc.). Not surprisingly, all of my counts were good enough to warrant treatment today as planned after a two-week break at the end of December 2017.

Michael and daughter Megan Becker in the chemo suite at MSKCC

Knowing today might be a bit crazy, I had scheduled an early morning appointment to try and get ahead of any delays. We arrived a few minutes before my 7:45am ET blood test and ended up catching the 12:20pm ET train from New York to return home. Everything went fine with treatment, although I don’t usually start feeling the side effects for a few days.

I met with my oncologist Dr. Pfister during today’s appointment. He discussed doing my next CT scan around the end of January 2018, which would be after the current chemo treatment cycle is finished. Depending on those results, he discussed maintenance treatment with just one of the two chemotherapies if the scan looks good. Otherwise, he might recommend switching to cetuximab (Erbitux©) if the chemo isn’t continuing to work. Either way, it looks like I’ll be coming to another key treatment decision point early in 2018.

The best news of the week was being able to spend New Year’s Eve celebrating with my wife, Lorie. Actually, “celebrating” might be a strong word–unless you expand the definition to include sitting on the couch watching Dick Clark’s New Year’s Rockin’ Eve with Ryan Seacrest and going to bed before midnight. But, we were together for yet another milestone. One that, frankly, I was quite surprised to see.

To my family, friends, colleagues, researchers, health care providers, members of the media and anyone reading this blog post–thank you for your interest in my cancer patient journey. I wouldn’t be here today without such a strong support network. Best wishes for good health, plenty of happiness, and much prosperity in 2018 and beyond to all of you!

 

Good Luck Charm?

It was July 18, 2017 when I started my third line of treatment (carboplatin/paclitaxel) for Stage IV squamous cell carcinoma of the head and neck. Things weren’t exactly going great at the time and I remember thinking that I wouldn’t make it until my 49th birthday in November.

For example, I had two chest tubes to manage a pleural effusion (buildup of fluid in the pleural lining of the lung). My tumors were slowly growing with each CT scan. Additionally, I had an IVC filter put in to manage clots since blood thinners had caused bleeding issues. I was a mess and in-and-out of the hospital constantly.

Earlier today, however, I received my third consecutive CT scan report since starting chemo again that showed further decreases in my lung, spleen, and pleural metastases (where the cancer had spread). It looks as though the cancer continues to respond to the treatment, which is great news.

It just goes to show the perils of trying to answer the question every cancer patient wants to know: How much more time do I have left? It doesn’t stop us from asking physicians, but as a dear friend consistently points out to me – you just have to live in the moment and enjoy every day. Much easier said than done, but sage advice nonetheless.

Our pup Humphrey

I can’t help but wonder if our 8-month old golden retriever puppy, Humphrey, is perhaps some kind of good luck charm? We got him about a month before I started treatment and things have been going relatively well since then. Not that we need another reason to love him! He’s such a clown, always making us laugh and smile. We love all of our other pets too, but there’s just something about Humphrey that makes him special. At the very least, he’s a great therapy dog for me.

In any event, today is a very good day. It will be nice to bask in the warmth of some good news as the colder weather of the season approaches.

Two Years Gone

You’ll know from the opening pages of my memoir A Walk with Purpose that it was the day before Thanksgiving in 2015 when I first discovered a large lump on the right side of my neck. The discovery catapulted me on a journey that I never could have imagined, full of twists and turns and changing the very fiber of my being—physically, emotionally and spiritually.

A lot has changed in the past two years—some good, some bad, some perhaps downright ugly. But Thanksgiving has always been one of my favorite holidays—a time of reflection and giving thanks for the goodness of the season past instead of complaining about what we don’t have.

Throughout the process of writing my memoir, I was constantly amazed to see how all the gifts and experiences of this world came together like tiny puzzle pieces to reveal the bigger purpose of my life. In particular, how an unlikely career path to the biotechnology industry would help forge key relationships, open new doors, and help me navigate a cancer diagnosis and treatment through the knowledge gained over decades of service and leadership. Most importantly, how I could use all of the aforementioned to help others facing head and neck cancer caused by the human papillomavirus (HPV).

In some ways, my revelation was reminiscent of the first time I saw the movie Signs written and directed by M. Night Shyamalan. In the movie, a father and former priest lives with his asthmatic son, his daughter who constantly leaves glasses of water sitting out around the house, and his younger brother, a failed minor league baseball player, on an isolated farm in Bucks County, Pennsylvania (coincidentally where we have lived for more than 15-years…). The father lost his faith and gave up his priesthood after his wife died in a local traffic accident. Towards the end of the movie, a crucial scene reveals the unlikely connection between asthma, glasses of water, and the mother’s final words to her husband instructing his brother to “swing away.” At the end of the movie, the father is shown returning to his priestly duties, apparently having regained his faith.

During 2017, I was fortunate to write and publish (then rewrite and republish…) my memoir. Since my diagnosis, I’ve also published a total of 70 posts (gulp!) on my patient blog. Supporting these efforts, I’ve worked with a publicist and conducted numerous interviews and penned guest editorials for various media outlets. All of these actions designed to: 1) help increase awareness of HPV and its link to six cancers in men and women; 2) underscore the need for additional prevention efforts for HPV-associated cancers, including efforts to increase vaccination coverage; 3) correct the misperception that HPV is mainly a disease affecting women; and, 4) highlight how HPV can be spread in the fluids of the mucosal membranes, which line the mouth, throat and genital tracts. Looking back at my efforts, I hope you’ll agree it has been a productive year.

I’m currently going through my third treatment regimen (chemotherapy) with the simple hope of buying more time. My body is weary from repeated assault with toxic chemicals aimed to keep the cancer at bay—hoping to see the day when a better treatment option becomes available. Fortunately, my current quality of life allows me to continue my walk with purpose. In fact, today I am doing a couple of media interviews and meeting with a head and neck cancer patient support group in Princeton, New Jersey.

My next CT scan has been scheduled for the last week of November. The results of which will inform whether or not my cancer continues to shrink, stays stable, or is progressing. Regardless of the outcome, I strive to simply live in the moment and take advantage of the Thanksgiving period to consider how we can spread more happiness around, to look back at all the great memories and good people who came into our lives.

May the good things of life be yours in abundance not only during November but throughout the coming year. Thank you to everyone with an interest in my story for your continued support and for keeping in touch!

Book Re-Released

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.

Good News and TGIF

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.

Raspberry flavored, oral contrast agent to drink before CT scan

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.

Day Number Four in the Hospital

Life has been hectic since this past Sunday when Lorie and I drove to New York City for another visit to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility. Drainage from my chest tube once again changed from amber fluid to the color of a fine Cabernet wine, which signaled that bleeding resumed. More alarming was the accompanying shortness of breath and increased coughing. I was out of breath even from walking a short distance to go to the bathroom.

We arrived at MSKCC around 10am and, following a brief review of recent events, had a chest x-ray taken to get a quick read on the situation. The resulting images showed a complete “white-out” in the left lung, which indicated that fluid had essentially filled the entire space. Normally, the lungs look transparent or black on an x-ray due to air in the lungs.

The fact that I had only one viable lung explained the shortness of breath and coughing. What the x-ray couldn’t reveal was the composition of the fluid (serous fluid, blood, tumor) or its source. For more information, a CT scan was required and scheduled. Unfortunately, weekends at any hospital can be hectic and my CT scan didn’t take place until close to midnight and I was admitted.

Monday morning, we had the pleasure of meeting again with surgeon Dr. Bernard Park, deputy chief of clinical affairs, thoracic service at MSKCC. In December 2016, Dr. Park had successfully performed a bronchoscopy procedure to biopsy a suspicious lymph node near my airway. We knew that we were in good hands.

Dr. Park explained the situation and the requisite next-steps were abundantly clear. For whatever reason, the Aspira Pleural Drainage Catheter in my left lung wasn’t fully draining the fluid – especially towards the top section of my lung. That fluid needed to be drained in order to alleviate shortness of breath and coughing. How to best accomplish this was a source of significant discussion.

One short-term solution was to temporarily insert a plastic tube straight through the front of my chest into the top section of the lung to manually extract the fluid. This would require a brief stay in the hospital while the tube was present and it would be removed prior to going home. A longer-term solution was to place a second PleurX catheter that could be accessed whenever needed at home to extract fluid from the top section of the lung.

In either case, a potential pitfall was that the fluid in the upper section of the lung may actually be fibrotic scar tissue (called loculation) or tumor, preventing effective drainage. Dr. George Getrajdman, an interventional radiologist at MSKCC, proposed a step-wise procedure. First, he would try to extract the fluid near the top of the left lung using a syringe to see “if” anything could be extracted. If so, he could confidently proceed with placement of a second catheter (Option A) or the fluid could simply be drained with the syringe to see if that provided symptomatic relief before proceeding with more permanent catheter placement (Option B). Placing a temporary plastic tube was also a consideration (Option C), with the downside being that fluid accumulates again in the future – requiring another procedure. If no fluid could be extracted with a syringe, then the space was being occupied by something more solid (fibrotic scar tissue and/or tumor mass) and a catheter would be pointless. Ultimately, I decided to proceed with Option A.

Requiring more urgent resolution, however, was the recently discovered blood clot in my iliac vein near the pelvis and its potential to detach and cause a pulmonary embolism (PE) – a condition in which one or more arteries in the lungs become blocked by a blood clot, which could stop blood flow to the lung. With essentially only one lung functioning, a PE in my remaining viable lung would likely be fatal. Hence the sense of urgency.

Due to the recurrence of blood in the drainage from my original chest tube, we reached the point where taking anticoagulant medication (Lovenox®/ enoxaparin sodium) to treat and prevent deep vein thrombosis (DVT) was no longer viable and was discontinued. The only alternative was placement of an inferior vena cava (IVC) filter device designed to trap/prevent my blot clot from traveling from the largest vein in the body, the inferior vena cava, to the lungs or heart.

To insert an IVC filter, I was given medication to help relax and a local anesthetic to numb the area of insertion. Implanting the IVC filter was Dr. Getrajdman, who inserted a catheter through a small incision in my neck. Using X-rays images to guide the procedure, he advanced the IVC filter through the catheter and into the inferior vena cava. Once the IVC filter was in place, he removed the catheter and put a small bandage on the insertion site.

X-ray image following drainage of 1.5 liters of fluid from left lung showing air returning to the top portion (red circle).

Fortunately, Dr. Getrajdman was also able to deal with the left lung issue during the same procedure. Approximately 1.5 liters of fluid were successfully acquired from the top portion of the lung, so he proceeded with placement of a second catheter as planned/hoped. Both procedures took about 1.5 hours in total to complete. Afterwards, an x-ray confirmed that the top portion of the lung was free of fluid as shown in the accompanying image.

My breathing improved immediately following the procedure and I felt fine with all of the pain medication. However, waking up the next day (Tuesday) I felt like I’d been hit by a truck. There was a fair amount of pain at both the incision on my neck from the IVC filter insertion and the newly placed catheter site. As the day progressed, the pain diminished and I started feeling much better.

By late afternoon, tissue plasminogen activator (TPA) was injected through my original Aspira chest tube to help clear the line by breaking down blood clots. Afterwards, we were trained on using the “new” PleurX catheter and then proceeded with draining fluid from both the top and bottom catheters. The top PleurX catheter rapidly drained 500cc of fluid, which looked far less bloody than what had previously been extracted from the bottom. We were only able to drain 200cc of fluid from the bottom Aspira catheter, which was still bloody and thicker. It’s speculated that the fluid from the bottom was left over from before and there was no active bleeding, which will be confirmed by monitoring hemoglobin levels.

With the IVC filter in place and the ability to drain both top/bottom fluid from my left lung, I was able to proceed with my second dose of chemotherapy while in the hospital. This consisted solely of paclitaxel and then next week should be my initial loading dose with cetuximab.

We’re planning to try draining both chest tube sites today (Wednesday) and looking for further improvement in subsequent chest x-rays. Assuming all goes well, I should be released from the hospital but need to stay in NYC overnight and see my oncologist tomorrow. I’m feeling much better now, but the coming days should be when the effects of my first week of chemotherapy (paclitaxel/carboplatin) start materializing. In any event, I’ll be happy to get home hopefully tomorrow and see how big our new puppy Humphrey has grown in the short time we’ve been away.