Settling in at Home

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, our dog 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.

Michael Becker and Humphrey
Michael Becker and Humphrey

Milestones

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!

Michael and Lorie Becker, March 29, 1992
Figure 1: Michael and Lorie Becker, March 29, 1992

Death: Friend or Foe

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.

Figure 1: Lorie and Michael Becker with Humphrey at MSKCC

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.