Michael D. Becker's Blog

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This is Lorie with the final blog post. Michael passed away at home on Tuesday, July 9th. Our lives will be forever changed. He left his mark on the world and educated many along the way. My heart is truly shattered. I’m told time eases the pain. Thank you for all of your love and support and hopefully this will help sustain us. May his memory be a blessing.

Biotechnology Innovation Organization
Published on Jun 4, 2019

Debuting for the first time this year, patient advocates, industry leaders, and BIO experts discuss emerging trends live from the convention floor in Philadelphia. Catch Good Day BIO’s inaugural episode here! Please click the play icon below to start at Michael Becker’s segment.

To say it has been a bit damp and stormy lately here would be an understatement. This past week is the first time that I can recall being forced into the basement to seek shelter from a tornado warning.

Things aren’t much better back in my home town of Chicago, which broke the record for wettest month of May in its history. The rainfall total for the month climbed to 8.25” at O’Hare this past Thursday morning.

When the local forecast called for warm and dry conditions over the weekend, I couldn’t help but beg Lorie to go for a walk at Tyler State Park. While my breathing conditions deteriorated, a wheelchair had been dropped off on Saturday. Also, I received a prescription for morphine sulfate oral solution to help open up my airwaves. What could go wrong?

I haven’t been able to take our pup Humphrey for a walk in quite some time, so bringing him along was a must. However, I didn’t think through how little I would be able to help. Holding his leash in my hand(s) would be a sure-fire disaster — dragging me behind him at warp speed. Having Lorie hold one end of the rope while steering the wheelchair with the other hand was equally dangerous. Well, we’d figure something out.

I couldn’t see behind me, so I’m not sure what Lorie had worked out. Judging by her two scraped knees, it went about as planned. I felt awful. The struggle between my desire for freedom versus the safety of both Humphrey and Lorie was quite real. Humphrey only wanted to play with other pups he met in the park and who could blame him? But Lorie was running out of breath pushing the wheelchair through the rough gravel path, and it was clear my ill-planned trip needed to come to an end.

Next time we needed to enlist the help of a third person to handle Humphrey or leave him at home. We broke out the water bowl for Humphrey before heading home. Afterward, he quickly fell asleep in the back of the car.

While the trip was otherwise fun, it was a sad reminder that my days of doing speaking engagements and other patient advocacy activities have come to an end: “The spirit indeed is willing, but the flesh is weak.” (Matthew 26:41). Even with the assistance of Lorie, an oxygen tank, and morphine, I couldn’t manage to make the short trip.

This week was also the first anniversary when I returned to Chicago in connection with the year’s largest cancer confab — the American Society of Clinical Oncology (ASCO) annual meeting. At the time, I did a speaking event and second edition book signing for McKesson. I cannot imagine doing that event again now.

Terminal cancer patient releases his first public service announcement (PSA) aimed at encouraging faster diagnosis of head and neck cancer.

It was November 25th, 2015, the day before Thanksgiving and I was working from home. After responding to some emails that morning, I got ready and tiptoed gingerly up and down the cold white tiles of our bathroom floor, waiting for the shower water to heat up.

In the mirror’s reflection, I suddenly noticed something different about the right side of my neck. Placing my hand there, I could feel a solid lump just under my jawline that was about 3 centimeters in diameter (see Figure 1). The left side of my neck appeared normal.

The bulge wasn’t there the day before, or I would have felt it while shaving. It was a solid mass and wasn’t sore at all to the touch. It didn’t feel warm and seemed tethered to its location.

Putting my shower on hold, I threw my sweatpants and t-shirt back on and hurried back to my computer to do a quick search on the medical literature website PubMed from the U.S. National Library of Medicine. I quickly came across one medical journal article that contained a startling statistic: More than 75% of lateral (side) neck masses in patients older than 40 years are caused by malignant tumors.

The same article continued with guidance that “in the absence of overt signs of infection, a lateral neck mass is metastatic squamous cell carcinoma or lymphoma until proved otherwise.” The results made me nervous enough to reach for the phone and call our family physician for an appointment that day.

The most common cause for enlargement of the lymph nodes is infection or inflammation. However, such lymph nodes are often swollen, tender, and mobile. They can also exhibit abnormal redness of the surrounding skin and feel warm to the touch. Other than being swollen, my enlarged lymph node didn’t have any of these other symptoms.

My physician prescribed an antibiotic and instructed me to follow up with an Ear, Nose, and Throat (ENT) specialist if the lymph node didn’t decrease in size or got worse after the weekend. Unfortunately, there was no change in the size of my lymph node and subsequent testing confirmed the diagnosis of advanced oropharyngeal squamous cell carcinoma (OPSCC).

I’m thankful that my physician gave me a short course of antibiotic treatment. An article from the American Family Physician suggests a 2-week trial of antibiotics and then referring the patient for a biopsy if no resolution. Every delay of one week in the referral of an OPSCC patient to secondary care correlates with a more advanced cancer stage at presentation and is associated with poorer survival.

Call to action: Men and women over the age of 40 who discover a suspicious lump or mass on either side of their neck shouldn’t delay in seeking medical attention. Many patients should also avoid being treated by courses of antibiotics for weeks or months, as this causes a delay in referral to secondary care, generally to an ENT specialist. Don’t delay — get a suspicious neck lump checked out today!

Disclaimer: Michael Becker is not a doctor and does not have formal medical training. His commentary should not be construed as recommendations, endorsements, or medical advice.

In retrospect, the month of April was a blur. Between selling our former home, purchasing a new home, and my transition to home hospice care, there was a lot to do and consider. Through the fantastic generosity of family and friends, along with a lot of effort from Lorie, amazingly everything went smoothly.

It was tough for me to be a spectator for most of the events mentioned above since I’m restricted from physical activity due to cancer invasion of my spine. As just one example, I’m not supposed to lift more than 5-pounds or risk further fracture.

Making matters worse, I still don’t look like a terminal cancer patient. Other than seeing the hospital beds in our house, I’m sure that some of the people helping us pack questioned why I wasn’t lifting a hand with the move. Whether this was true or not, it affected me emotionally by adding to my depression. I wanted so badly to help.

As mentioned in a recent tweet, what’s been my biggest surprise since being diagnosed with terminal cancer? The people you thought you could count on but were wrong and the people you least expected to be there but rose to the occasion. So, for everyone who contributed financially, physically, or otherwise during the process — thank you from all of us!

I am also frequently asked whether or not I will be receiving further cancer treatment. In this regard, hospice stresses patient “care” over “cure”. The goal is to provide comfort during the final aspect of life. Therefore, no — I will not be receiving further treatment, such as chemotherapy, radiation, or participating in clinical trials. My ideal scenario, as described by Dr. Robert M. Wachter in a recent opinion piece for The New York Times is “death with dignity and grace, relatively free from pain and discomfort”.

Fortunately, Humphrey did his best to reassure Lorie that he’d take good care of me as she returned to work after spring break. More comforting to her, however, are the weekly visits from hospice to monitor my vitals, change the bandage around my patient-controlled analgesia (PCA) device, and adjust my various medications as appropriate. I feel like we’ve made good progress in each of these areas over the past month and life is slowly returning to a “new normal.”

One remaining issue relates to sleeping through the night. The beds provided through hospice are adjustable and comfortable, but I tend to wake up in the early hours and then have trouble getting back to sleep. Accordingly, my nurse Linda suggested switching from Ativan (lorazepam) to Klonopin (clonazepam). Both medications are sedatives that can treat anxiety disorders, but they have differences in how long they work. Klonopin has a slightly longer half-life than Ativan, which may help me sleep through the night.

In other news, I decided to close my Facebook account this week (for a variety of reasons). Going forward, this blog and my Twitter account will serve as the best ways to keep track of my cancer journey. Sign up for new post alerts here using your email address to be notified each time there is a new blog entry.

After completing the third and final palliative radiation therapy (RT) session this week, I was finally able to return home from Memorial Sloan-Kettering Cancer Center (MSKCC) after being admitted on March 8, 2019. The severe pain that plagued me during this period is due to the progression of cancer in my spine, which is managed through a combination of steroids and oral/IV narcotics. Hopefully, the RT will also provide pain relief in the coming days/weeks and reduce my dependence on the other medications.

In view of the relatively rapid cancer progression and difficulty in getting my pain under control, I made the decision that it was time for hospice. While many people believe that hospice care is only appropriate in the last days or weeks of life, it can be beneficial as much as 6 months before death is anticipated.

Hospice arrangements were coordinated with MSKCC, so I was sent home connected to a patient-controlled analgesia (PCA) pump allowing me to administer my own IV pain relief. With the press of a button, I can activate the fentanyl pump when/if the pain manages to break through the relief being provided by methadone, acetaminophen, gabapentin, and other oral analgesic drugs.

A hospital-style bed was waiting for me in our family room when I arrived home. Later that afternoon, members of the hospice team arrived to answer questions and ensure that I had all of my medications. It was a very smooth transition.

Lying in bed this morning, I could hear birds chirping outside as the first light of day crept over the horizon. Why was I awake so early? Perhaps it’s from the stimulative effects of the steroid medication. Maybe it’s just too hard to go back to sleep after finding myself once again tangled up in IV tubes connecting me to the fentanyl PCA.

My mind drifts to the principle of Occam’s razor: that the easiest explanation tends to be the right one. My mind is reeling over the fact that today marks another beautiful milestone. One that I didn’t think I would live to see, but am so blessed to witness. Today, Lorie and I celebrate our 27th wedding anniversary (Figure 1).

Many people are thankful to witness the dawn of a new day. My father-in-law used to say that any day he could wake up and tie his own shoelaces was a good day. I couldn’t relate to the sentiment at the time, but now as a terminal cancer patient on hospice—it makes perfect sense.

Consider the plight of people living with Alzheimer’s disease (AD) and the impact of this awful condition on their caregivers. As time passes and the disease progresses, memory problems worsen. The AD patient may fail to recognize close relatives, which can lead to irritability, outbursts of unpremeditated aggression, or resistance to caregiving.

Similarly, cancer can induce cognitive impairment. This can be attributed to the direct effects of cancer itself and/or due to the adverse effects of the treatment(s) given for the disease. Most studies have identified attention, memory, and information processing as the most common cognitive domains impacted by cancer and cancer-related treatments.

I have been irritable as of late, which is likely a side-effect of stress, steroids, and other medications more so than disease progression. But most of my cognitive impairment is mild and relegated to simply forgetting something I said or did. Fortunately, it would take much, much more to impact my ability to recall that for the past 27 years I’ve been the luckiest man alive. Happy Anniversary, Lorie!

Daniel Callahan, a pioneer in bioethics and noted author wrote, “Is death a friend or an enemy, to be acquiesced to or to be fought?” Nearly 25 years later, the answer to his important question remains elusive for both patients and health care providers.

Prior to my Stage IV cancer diagnosis in December 2015, I viewed death as a worthy adversary. One to be respected, even feared. For this high-profile, final opponent would appear one day to fulfill its destiny. Regardless of wealth or social status, “…in this world, nothing can be said to be certain, except death and taxes.”

Cancer’s rapid advancement over the past few weeks provided an opportunity for me to rethink my image of death. As I knew and expected, bone is one of the most preferential targets for cancer to spread. Unfortunately, I’ve also experienced that bone pain is very difficult to treat and tends to be resistant to opioids. For these reasons, among others, my quality of life has greatly diminished since cancer first spread to my bone around October 2018.

In reading a retrospective review about bone metastases from squamous cell carcinoma of the head and neck (SCCHN), I was quite surprised by the accuracy of some key statistics. For example, the time from primary tumor diagnosis to the identification of metastatic bone disease ranged from being present at the time of initial diagnosis to a maximum 3.5 years later. Time from identification of metastatic bone disease to patient death was no greater than 8 months.

My initial diagnosis of Stage IV SCCHN was relayed to me in December 2015. Three years later, cancer spread to my spine. If the time from identification of metastatic bone disease to patient death is no higher than eight months, then my expiration date should be somewhere around May/June 2019.

Friedrich Wilhelm Nietzsche, a German philosopher, was quoted saying, “To die proudly when it is no longer possible to live proudly. Death of one’s own free choice, death at the proper time, with a clear head and with joyfulness, consummated in the midst of children and witnesses: so that an actual leave-taking is possible while he who is leaving is still there.”

Today (Friday) represents the two-week mark for my current hospital stay at Memorial Sloan-Kettering Cancer Center (MSKCC). Fortunately, I’ve had several wonderful visitors including Lorie, Humphrey and my oldest daughter, Rosie.

After completing all three palliative radiation therapy (RT) sessions targeting the tumor next to my T8 vertebrae, I plan on going home this coming Monday. Today I had the second RT session without incident.

Assuming all goes well, we have already made arrangements for hospice to come to our house. They will help us achieve the following goals of their care: (a) to help relieve my pain and suffering; (b) to make possible a “good” death; (c) to help Lorie and our daughters; (d) to assist in the search for meaning.

On Monday, I was able to complete the remainder of my magnetic resonance imaging (MRI) scan without further issue. Not surprising given that MRI imaging is an exceedingly safe technique with more than 30 million scans being performed every year in the United States. Nonetheless, my bizarre experience during Saturday’s initial attempt still left me a bit apprehensive.

MRI machines use strong magnetic fields and radio waves (radiofrequency energy) to produce images. In fact, the most considerable safety concern in the MRI environment is the effect of the magnetic field on medical devices, implants, and any ferromagnetic objects in the room (clips, coins, body piercings, steel oxygen tanks, etc.) that can become very dangerous projectiles. This is why patients are carefully screened by a qualified healthcare professional even before entering the MRI environment.

Before Saturday, I was familiar with the potential magnetic field concerns of an MRI but unaware of the bio-effects of radiofrequency fields (RF) that can cause tissue heating in the human body. All of my prior MRI imaging took place on the tried-and-true 1.5 Tesla (1.5T) machines versus the 3.0 Tesla (3.0T) used on Saturday. A 3.0T MRI provides higher clarity and better detail because the magnetic field is twice as strong as 1.5T. Based on my recent experience, however, the stronger 3.0T MRI may have been just enough for me to sense the increased temperature in my chest and abdomen towards the end of the scan.

Regardless, given the differences between the 3.0T and 1.5T machines and not knowing what to expect in terms of a potential internal warming sensation likely resulted in my having a rather decent panic attack. Stuck in a tube and unexpectedly feeling like you could be boiled from the inside is a bit disconcerting. Technicians already inform patients about what to expect once a contrast agent is injected as part of the MRI procedure. Going forward, additional disclosure to patients about other differences between T3.0 versus T1.5 might help patients avoid unnecessary anxiety.

While there wasn’t a dramatic progression of my cancer based on Saturday’s CT scan of my abdomen/pelvis, the overall picture looked different when combined with the results from the MRI of my spine and the increasing level of pain. Bottom line: a relatively rapid advancement of cancer in the bone occurred. Taxol alone isn’t cutting it; a change in course is recommended.

Accordingly, we are forgoing the last dose of Taxol this week (should have been dosed today…) and moving forward with plans for radiation therapy (RT) to the new tumors next to my T8 and L3 vertebrae. The goal of this round of RT is to alleviate my pain and potentially reduce dependence on steroids, opioids, gabapentin, etc.

In the background, arrangements are being made for me to be seen in the Early Drug Development clinic at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss clinical trial options after I’m discharged from the hospital. Hopefully, this occurs on Friday, which represents the one week mark for my current hospital stay.

Note: I finished this post and went to walk a lap or two around the hospital floor. Turning one of the corners and who do I literally bump into? My wife came to visit me by surprise! I’m just SO darn lucky and blessed to have her by my side now.

On Friday, I had an appointment with Dr. Nancy Lee, my radiation oncologist at Memorial Sloan Kettering-Cancer Center (MSKCC). Upon arrival in the exam room, we discussed the area of increasing, severe pain in my lower left chest/abdomen region.

I was concerned that the pain could be a late gastrointestinal (GI) toxicity from radiotherapy that I received in November 2018 to shrink the lesion on my spleen. GI organs that have classically developed radiation-induced toxicity include the small bowel, liver & biliary system, esophagus, and rectum. But as Dr. Lee produced the CT images used to create the radiation treatment plan on her computer, it was clear that the area responsible for my pain was spared from receiving any significant radiation exposure.

Dr. Lee noticed the distension in my abdomen, which had slightly increased in size following my earlier appointment with medical oncology on Tuesday. This gave rise to concerns about a potential gastrointestinal blockage and the desire for more diagnostic imaging. Accordingly, I was sent to MSKCC’s urgent care facility. A short elevator ride, as it is conveniently located in the same building.

During my urgent care visit, I received stronger pain medications via IV infusion, including Dilaudid® (hydromorphone) and fentanyl. The fentanyl seemed to work better, but the amount of relief was still minimal. I was given a patient-controlled analgesia pump that allowed me to dose as needed (Figure 1).

By early evening, a preliminary review of the abdominal CT scan didn’t reveal any significant issues—at least none that would explain the severe pain. For example, there was some moderate growth in the lesion on my spleen, but nothing that seemed to support the level of discomfort I experienced. I was admitted to the hospital by early Saturday morning for more testing.

In some situations, a CT scan can detect abnormalities better than an MRI, including acute bleeding and bone fractures. By contrast, the resolution of newer MRI’s (3-T versus the standard 1.5T) are best at detecting small/subtle lesions or nerve injuries—so an MRI scan was scheduled for 6:30 pm Saturday.

Even before being diagnosed with cancer, I’ve had numerous MRI scans without any issues. In particular, I’m not claustrophobic and haven’t experienced any significant anxiety while being stuck in a tube for 30-40 minutes. Plus, there are no known biological hazards to humans from being exposed to magnetic fields of the strength used in medical imaging today. The fact that MRI systems don’t use ionizing radiation like other imaging modalities is also comforting.

I made it through the majority of the MRI imaging procedure—before the point where the contrast agent would typically be administered (after approximately 20-minutes). At this point, my chest and abdomen started to feel increasingly warm. It was different from any prior MRI procedure and caused me to alert the medical staff to stop.

The radiofrequency power delivered to tissue during an MRI examination results in heating of patient tissues, but MRI scanners have power limits that keep the radiofrequency power deposition to levels that are safe for most patients. In this regard, metals such as used in electronic medical devices, piercings, and tattoos, have the potential to cause severe burns or other harm within an MR imaging environment. For this reason, individuals are given a screening checklist to identify these issues in advance. In my case, there are no objects in my chest/abdomen region to explain the warm sensation.

My heart and mind raced as I tried to calm down after being removed from the MRI tube. Unfortunately, anxiety got the best of me (as I feared being boiled alive…) and I couldn’t bring myself to finish the procedure. I deeply regretted not requesting a dose of Ativan® (lorazepam) before the MRI.

In the past, I’ve experienced an overall warm, flushed sensation with iodine-based contrast agents during a CT imaging procedure. The feeling is short-lived and not as severe as what I experienced in the MRI. Besides, gadolinium-based contrast agents are used during an MRI procedure, not iodine-based agents. And again, my MRI was halted before the contrast infusion.

Without additional diagnostic information from the MRI, it is difficult to pinpoint the source of my pain. The best option is to complete the remaining ~15-minutes of the MRI with the contrast agent, which hopefully I’ll be able to manage today (Sunday) without issue.

In the meantime, I continue pushing away on my fentanyl pump between getting a few hours of sleep in the hospital. While still in varying amounts of pain, at least it isn’t “constant” as it has been over the past few days. Small progress, but I’ll take it.