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Patient Profile: Alexis Chase, PhD

Patient Profile

Alexis Chase, PhD

“To be empowered you have to be open, to want to do it, and to accept where you are.” – Dr. Alexis Chase, An MPN Empowered Patient

Dr. Alexis Chase has had a pretty interesting life, but she doesn’t think that makes her unique. She says she thinks all women have interesting lives. Born congenitally blind in her right eye she was given the name Alexis Elizabeth Lucia Chase. “I’m very proud of my name,” she says explaining the origin. Alexis was the name of a doll her mother had as a girl, and it means protector of mankind. Elizabeth is a family name, and Lucia represents Saint Lucia, the patron saint of the blind. Her mother was a nurse and her father, who was the first to recognize she had a vision issue, had a degree in biology. She was very close with her parents who instilled in her a strong foundation in her Roman Catholic faith. While she was born in Connecticut, she spent most of her adult life in Georgia as a divorced mother who built a successful 27-year career in the prison corrections system. She worked her way up to warden and earned two PhDs, one in religious counseling and one in criminal justice and corrections. After her retirement she became an international advocate and consultant of gender and women’s rights issues that include vocational training, post-incarceration reintegration, and female prisoners with children. She has travelled as far as Afghanistan in her advocacy work, and she is also the proud nana to a cat named Nathan Edgar Chase. She’s done a lot, and much of what she’s accomplished, she’s done while living with cancer.

The first time she was diagnosed with cancer was in 1976. She was in the first trimester of a high-risk pregnancy when she was diagnosed with ovarian cancer. Her doctors thought it would be best to terminate the pregnancy, but she refused. She was determined to have the baby, her daughter, and as soon as she was born, Dr. Chase began treatment for her cancer, opting for an experimental drug that she says saved her life.

At the time, her parents, her desire to live for her daughter, and her strong faith gave her the support she needed. “They were right there with me,” she says of her parents who she is grateful to for her faith. “It’s my great equalizer. My rope of hope,” she says and adds that she can pull on her faith anytime and in any place. “You’ve got to believe in something greater than yourself because definitely we’re not it,” she says.

She’s had no recurrence of the ovarian cancer, but in 1996, during a regular wellness checkup, she was diagnosed with myeloproliferative neoplasms (MPNs), a group of blood cancers that affect the function of bone marrow and can cause a number of complications. In Dr. Chase’s case her MPNs includes iron deficiency, anemia, diseases of the blood and blood forming organs, and hypothyroidism. MPNs are chronic conditions that can transform into another blood cancer and can affect people at any age but are more common in older adults. MPNs are also progressive. Dr. Chase had no symptoms for the first four years after her diagnosis, and wondered if she’d been misdiagnosed, but in 2000 she says she just started to feel like something wasn’t right and that’s when her blood counts started to change. She began taking medication, but in 2020 it stopped working and her cancer team worked to find other medications and therapies to treat her.

MPNs are rare and she doesn’t know anyone else with the same diagnosis, but she says she has an incredible support network through her daughter, her friends that are like family, her church, and her cancer team. “They take great care of me,” she says, but she also takes great care of herself. In fact, she’s very meticulous about taking care of herself. She carefully takes her medications, and she makes herself a priority. She focuses a lot on her mental health and she stresses the importance of mental health for all cancer patients. She says she finds three ways to laugh at herself every day and she chooses six words every day that represent how she’s doing and to help her feel empowered. A recent example, “I feel surrounded by grace today”. Also, part of her self-care is taking the time to listen to calming and soothing sounds and inspirational messages and quotes.

She says it’s a blessing to have the cancer she has because she is able to handle it and it makes her take time to smell the roses. She’s handled it so well that during her career as a prison warden she never let on that she was sick. She managed to schedule her appointments around her work so no one would know. She didn’t want her illness to affect her career.

Always an empowered patient, she’s been known to walk out of a doctor’s office when a situation doesn’t feel right. “It’s important for people to feel like they are being heard and more importantly that they are being listened to.” She says “It’s also important to know what’s going on with your care. You know your body better than anybody.” Dr. Chase likes the Patient Empowerment Network (PEN) because of the resources it provides to help others feel empowered in their own care. “I found PEN and love that I can access it anytime,” she says. She feels it’s important for patients to take charge of their own care plans. “To be empowered you have to be open, to want to do it, and to accept where you are,” she says. Her recommendation to other patients is to read, and comprehend, everything they can about their illness. “If you don’t understand it, you need to have someone explain it to you,” she says and also recommends keeping a journal. “We have to have something tangible. We can’t remember everything.”

While she continues to accomplish a great deal while living with cancer, it’s not always easy. “The chronic cancer fatigue, it will get me. I fight it because I feel like once I give in it would overtake me,” she says. She does experience shortness of breath and plans her days around her energy level. “It slows me down, but I don’t let it stop me. I push myself because I know the next day or the next day I won’t be able to.” Along with continuing her consulting and advocacy work, Dr. Chase loves to travel and hopes to go to Turkey to see the Virgin Mary’s house. “You never know what God has laid out for you,” she says. “I’m still here. I’ve been symptomatic for 20 years and I’m still here.”

Bright Hope on the Horizon – Part Four

See the beginning of Sajjad’s story in Part One, Part Two, and Part Three.


Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

In February 2014, two groups of scientists in New York City presented the early data of what can only be described as a phenomenal study with phenomenal results.

In a study using sixteen adult leukemia patients, scientists took samples of each patient’s T-cells and samples of his or her cancer cells. Under laboratory conditions, they trained those T-cells to recognize certain specific traits of that patient’s leukemia cell and then attack to kill it—it was like teaching a drug-sniffing dog to find the cache of heroin. These were called “smart T-cells.”

The next step was crucial, dangerous, and amazingly clever.

The researchers cloned millions of these specially trained T-cells and then went back to the patients and gave them very toxic chemicals that destroyed their “dumb” T-cells—those that were still fooled by the cancer’s camouflaging. They then replaced them with the trained smart T-cells. 

Once infused, the trained T-cells set out like an elite commando force equipped with exact GPS coordinates and hunted down and killed the cancer cells.

The success rate of achieving a complete response was an astounding 88 percent!

The incredible success of that small study, and several others since, has sparked an explosion of interest and further studies by various medical centers and pharmaceutical companies worldwide, who are spending billions of dollars in similar research. These investments are sure to be returned many times over, of course. But it can only mean good things for cancer patients. Costs for adoptive T-cell transfer treatments now are prohibitive for individuals—upwards of $500,000 for one patient, which is totally unacceptable. But that will change in the near future.

And there were complications, of course, with ominous results for one patient. 

In one unfortunate patient, a man from New York City with Her2-positive colorectal cancer, doctors infused T-cells trained to seek out and kill Her2-positive cancer cells. The man went into respiratory arrest within fifteen minutes. His health continued to deteriorate over the next few days despite the best efforts of the medical experts. He died after four days when his lungs shut down completely. There was nothing they could do to save the patient.

An autopsy showed that the patient’s normal lung cells had traces of Her2. The “smart” T-cells had been attacking and killing the healthy lung tissues as well as the cancer.

These trained T-cells are like heat-seeking missiles. They will attack and kill as they have been trained to do—and there was no reversing this once they were set loose.

You lose any control over the missile once it is fired.

This unfortunate incident led to a temporary halt of all further experimentation in this area. The focus was shifted to try to find a way to control these smart T-cells after they were infused into the patient’s bloodstream. How do you stop these commandos if they go rogue? How do you destroy a wayward missile? 

A few different strategies have been developed to accomplish that. One of those is the development of what is called a “suicide gene”—and it is truly the stuff of science fiction. Now scientists can tag T-cells with this suicide gene. If they go haywire and start attacking normal cells, doctors can prompt them to destroy themselves, or commit suicide.

The first couple of the CAR-T Cell Therapies, as these are called, have already received an FDA approval and the newer & better ones are sure to follow.

It is nothing short of amazing. Today we are on the cusp of advances that were not even imagined just a few years ago. Now when someone disconsolately calls me for advice and tells me they have been given no more than two years to live, I tell them not to panic or lose hope. I emphasized that two years is an eternity when it comes to medical advances, the way science is exploding in its efforts to cure cancer.

“Take heart,” I tell them. “Every year, new drugs and modalities are being developed. In two or three years, you have no idea what new miracle drug may come out.” I suggest optimism and advise they focus on positive thoughts, avoid negativity and depression, refuse to panic, eat healthily, remain physically active, meditate, enjoy every little pleasure in life, and, as much as possible, avoid stress. Most of all, do not give up hope.

All that will boost your immune system and will go a long way toward beating this dangerous enemy.

Two years—or even a year—given the ways that science is moving ahead, is a terrific pronouncement. This, in no way, is meant to paint an unrealistically rosy picture. Cancer has been and continues to be an extremely deadly disease. Even though the death rate from cancer has gradually and steadily declined since 1990, there are still far too many patients dying from it. In the United States, cancer continues to be the second biggest cause of death, behind heart disease only. Over half a million patients die from cancer each year in the United States alone. More than eight million lives are lost worldwide.

I am fully aware of all that. Yet, there is no doubt that we are entering a much better and far more hopeful era. At no other time in the history of medicine have we been this tantalizingly close to achieving a major victory against cancer, a game-changing victory that could, possibly forever, change the cancer outlook. 

I believe this with all my heart.

Patient Profile: Liz Sarris

Patient Profile

Liz Sarris

Liz Sarris knows the world of healthcare pretty well. Not only has she had a 40-year career as a nurse, but she’s also had a host of chronic illnesses, which means lots and lots of doctor appointments. As if that weren’t enough, Liz has also been diagnosed with cancer three times – with three different and unrelated cancers! “I’m being watched closely from many angles,” she says. “But the great news is I live to tell the story.”

Her cancer story began in 1988. Her primary care doctor found some unexplained blood in her urine and, unable to dismiss it, referred Liz to a urologist. A scope of her bladder revealed a tumor that was about the size of a pea. Fortunately, it was non-invasive, had not invaded the bladder lining, and was removed. No treatment was required, but she did have to be monitored regularly. For the first two years she was checked every three months, then every six months for the next several years. After that she graduated to annual checkups that continue to this day.

Fast forward to 2014 when she was diagnosed with chronic lymphocytic leukemia (CLL). This time, Liz was seeing an endocrinologist for a thyroid issue when the doctor noticed some abnormalities in her blood work. Further testing led to her CLL diagnosis, which, so far, hasn’t required any medications or treatments other than quarterly check ins. “It is a watchful waiting situation,” she explains.

Then in 2017 things took a turn. Liz’s gastroenterologist, who she sees regularly for two chronic gastrointestinal issues, said that there was a spot on her scans that needed to be checked out. It was a spot they had been watching, but now it was starting to change. The spot turned out to be a neuroendocrine tumor of her pancreas. It was a slow growing tumor and not aggressive, but it was malignant and had to be removed, and there was a chance that it was a lot worse than the doctor thought it was. It meant major surgery that was not at all routine, and because her tumor was in the middle of her pancreas, it was possible that she might lose part of her pancreas and her spleen. Liz wanted the best possible outcome from the surgery, which meant keeping as much of her pancreas as possible, so she started to search for a surgeon. “I wanted to see the right people who were specific to this type of cancer and who do neuroendocrine tumors every day,” she says. “If he’s going to poke around my pancreas, I want to know he’s doing 10, 12, 15 of these surgeries a month.”

First, Liz narrowed her search geographically. She lives in an area that is relatively close to several high-quality medical facilities, and she knew that she didn’t want to be too far away from her family and support system after such a big surgery. Then she started asking questions and doing research. “Because I had engaged myself with good local physicians, I reached out to them for referrals,” she says. She asked her doctors who they would send their wives to and who they themselves would go to. Then she started calling surgeons and made appointments to interview three of them. When she had it narrowed to the surgeon she felt best about, she visited him a second time. “I don’t know if it’s the nurse in me or just who I am,” says Liz about her research process. She says that the doctor she chose made her feel confident, and his approach was more hopeful because he was willing to perform the surgery using a rare technique that meant he would remove the tumor from the center and then reconnect the two sides of her pancreas. Her doctor was upfront with her about all the possible risks and made sure she knew that his plan could change if the surgery revealed a different situation than they were expecting. “Do whatever you have to do to give me the best chance at a healthy life,” she told him and added that she hired him to do the job he would do for his mother, his sister, or his daughter and that she didn’t want to see him again in five years.

Her eight-hour surgery was a success. The tumor was removed, and her pancreas was put back together in what Liz describes as a “creative way.” After her surgery she didn’t require any treatment other than regular monitoring, and so far, all her scans have been good. She credits her successful outcomes in part to having a supportive family, good insurance, and good doctors, but she didn’t have good doctors by accident. She’s very proactive in her own healthcare. “I had the recipe for a good situation, but that doesn’t mean I didn’t have to do the research,” she says.

Her background as a nurse helped her know what questions to ask, but she wants others to know they can ask the same questions and can be just as informed. “You can navigate your care more than you think you can,” she says. “You really have to utilize your resources.” Liz says resources like the Patient Empowerment Network, where patients have access to free online tools such as a checklist of questions to ask the doctor, are great for cancer patients. “There needs to be more empowering,” she says. “Much of what I’ve done my entire career is try to empower patients.” She says that being empowered means being educated, identifying your expectations, and asking questions. “We are willing to ask questions of our auto mechanics about our car’s maintenance and repair, but not of our doctors about our own bodies,” she says.

These days Liz is adjusting her expectations for her own life. In March, Covid-19 interrupted the career she’s been so passionate about when her oncologist told her it wasn’t safe for her to continue to work during the pandemic. “This is not how I anticipated retiring,” she says. With her unique perspective as experienced patient and medical professional, she has a lot of knowledge to share, so now Liz is exploring how she can continue to help other patients learn more about how to navigate the healthcare system and take charge of their own care plans. She’s empowered to empower others.

Bright Hope on the Horizon – Part Three

See the beginning of Sajjad’s story in Part One and Part Two


Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

We all are familiar with the miracle of modern antibiotics. Most infections, even the serious and life-threatening kind, can usually be cured by the proper use of antibiotics. But antibiotics cannot work without help from the patient’s immune system. 

Every day, literally hundreds of times a day, various bacteria and viruses invade our bodies. Yet, we are not constantly sick. Why? Because our immune system is always on guard, ready to fight and destroy every potential enemy. The invaders are promptly killed and the threat is eliminated without us ever becoming aware of it. 

It is only when the bacteria manage to establish a beachhead that we show signs of illness. Even then, the immune system plays a critical role in helping the antibiotics conquer the infection. Antibiotics simply cannot work if the immune system is diseased and unable to help, as in HIV. That is precisely why in HIV even a minor infection can threaten the patient’s life despite the use of antibiotics. Our immune system is the most powerful, sophisticated, efficient, and elite fighting army one can imagine.

So, why does it not fight the cancer and kill it off? For decades, medical scientists have struggled with precisely this question. Why was the immune system actually ignoring the horrid invasion? Why was it sitting quietly by while the cancer invaded and destroyed one vital organ after another until it killed the patient?

It has been only in the last few years that we have realized what was happening.

Cancer is wily and cunning. That, of course, is not a surprise. But researchers have begun to understand that cancer cells actually make themselves invisible to the immune system. We still do not have a complete understanding as to how, but we have learned a few things. 

This we do know: The immune system fights off various invasions through a system of checkpoints. Say, for example, you have strep throat. When the germs first invade, an alarm is triggered which serves to mobilize the body’s immune forces. They attack the strep germs and kill them off. Soon, the immune forces reach a checkpoint where they must stop to receive fresh orders. If the threat persists, the order will be to continue the attack. On the other hand, if the threat has been eliminated, that information will be conveyed to the immune forces, thereby shutting them down. Obviously, we do not want our army to keep firing after the enemy is dead. It will only cause harm to the civilians. Similarly, our immune system must not go on unchecked in order to prevent damage to the normal and healthy tissues. 

So, our immune response is a pattern of repeated starts and stops regulated by a series of checkpoints. 

Scientists have learned that cancer has the ability to trigger checkpoints or manipulate the checkpoint signals. As soon as the immune forces attack the cancer, it initiates a checkpoint signal to terminate that immune response. Cancer has a way of making the checkpoint say—to continue the analogy—”No problems here. The threat is gone. All clear now.” 

So far, we only know about a couple of different ways this is accomplished. But it is very likely that the wily cancer has many other ways to fool the immune system. Our knowledge is still growing by the day.

Once scientists understood that mechanism, they began to develop medicines that neutralized the false checkpoint signals created by the cancer, thus allowing the immune system to continue to attack and kill the cancer cells. These drugs are called checkpoint blockade therapies.

In clinical trials, these medicines have produced a 66 percent success rate against an extremely deadly cancer, malignant melanoma. This is an astonishing success, and we may even improve upon that success as we learn to use different drug combinations and newer and better drugs are developed. Each day brings the dawn of a new hope.  One of the newer checkpoint blockade drugs, Pembrolizumab (Keytruda) has consistently shown encouraging results in a variety of, hitherto untreatable, cancers. 

Another prong in the battle that has brought jaw-dropping positive results is something called adoptive T-cell transfer. This is the stuff of science fiction. And the exciting results it is producing have turned cancer research on its ears.

Using T-cells to kill cancer will put medicine on the cusp of being able to say we have found a cure for cancer. Adoptive T-cell transfer therapy is the most promising technique we have to finally attain the Holy Grail of cancer medicine—to be able to utter those three magical words to the patient: “You are cured!” 

T-cells are our immune system’s killer cells. Think of them in a way as an elite commando force that can seek out and destroy the enemy. The challenge is this: because of mechanisms we are still trying to fully understand, cancer cells camouflage themselves from T-cells. So, how do you make the T-cells “see” this enemy called cancer? If they can see it, they will attack it and destroy it. 

Bright Hope on the Horizon – Part Two

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

Click Here to Read Part 1

(Dec 2020)

I would like to think—hope in fact—that no future cancer patients will have to fight the way I did to get certain treatments, that doctors today could help them prevent that. Oncologists now universally accept this novel concept that each patient’s cancer is different and must be treated differently. Treatment needs to be based, not on it’s  location, but on the unique pattern of gene mutations it exhibits. This understanding has led to the development and increasing usage of a test called Genome Typing. In the simplest explanation, genes are microscopic particles (nucleotides) located on the chromosomes of a cell. The genes instruct the cell to behave in a certain way and perform certain functions. Cancer alters, mutates, a gene to send a different signal to the cell so it  performs, not its normal function, but a function suitable for the cancer’s growth. This pattern of Genetic Mutations is unique to each cancer. Discovering and, possibly, attacking these mutations is called Targeted Therapy. Let’s assume that one patient’s parotid cancer shows the same gene mutations as the other patient’s breast cancer. Therefore, both these cancers need to be treated with the same medicine. The location of the cancer is totally irrelevant.

The problem is that federal agencies and the health insurers are still stuck in the past. My cancer, the salivary duct carcinoma of the parotid is practically a twin of the ductal carcinoma of the breast. It stands to reason that a drug that worked against one is likely to work against the other too. Because breast cancer is very common and parotid cancer is exceedingly rare, it is far, far easier for researchers and drug companies to test a new drug against breast cancer than against parotid cancer. Therefore, they can present convincing data to the FDA to show that a particular new drug works against breast cancer and thus get the approval for its use in breast cancer treatment. Unfortunately, parotid cancer patients, due to their small numbers, are left out in the cold. There are plenty of drugs that are FDA approved for use for breast cancer but none for parotid cancer. This allows the health insurers to refuse payment for most new drugs for patients like me. It becomes an uphill battle, often futile, to fight. I am blessed to have had the wherewithal I did, but not everyone survives the fight.

The simple logic is that if a drug blocks Her2 and successfully treats Her2-positive breast cancer, its use should be approved for any cancer anywhere that is Her2 positive. Unfortunately, this simple logic is lost on many in the hierarchy.  Lately, there have been some encouraging signs that the FDA is moving in this direction. Insurers are still slow to respond but ultimately they will.  Tomorrow is looking better and brighter.

I think of the whole thing in this way: The evolution of cancer treatment is similar to the evolution of how we used telephones. Years ago, in the 1940s and 1950s, we had neighbors sharing the same line, first the crank-up type and then old rotary phones—party lines they were called. It would not be unusual to pick up the phone and learn that your next-door neighbor was already talking on it. You would have to wait—and hope that your neighbor would not blather on for another hour before you could make your call.

Later, we began to see home phones—one house, one line. But still, everyone in the house was on the same line. If you picked it up to make a call, you might hear your brother talking to his girlfriend. You couldn’t get on until he hung up.

Today we have cell phones and the days of the house phone are almost over; the concept of a party line is simply laughable. 

Cells phones of today are highly personalized and sophisticated communication tools. They are configured exactly to specific users’ specifications: their own phone number; the exact amount of memory they need; the number and kinds of apps they want installed; their contact list; their choice of songs, photos, videos, and documents; and even their very personal and confidential data. It is a highly personalized gadget now.

So is cancer treatment.

And that wonderful news is why if there were a better time to have cancer, to have a doctor drop the bad news on you, it is today—right now.

Why is this happening?

On one front, medical science continues to make extraordinary strides. Each new kernel of knowledge accelerates and expands what was previously known—one new discovery leads to five more. Targeted therapy is one example—but a very good one.

On a second front, doctors have begun to expand their knowledge about how to marshal the body’s own defenses, its own immune system, to attack cancer.

Former President Jimmy Carter astounded the world in December 2015 when he announced he was cancer free. Only months before, he had said it was unlikely he would survive the late-stage malignant melanoma that had spread to his brain.

He might have astonished the general public, but medical insiders were not as surprised. Mr. Carter was the beneficiary of a new wonder drug, Nivolumab, and the relatively new concept of immunotherapy for cancer—checkpoint blockade.

Bright Hope on the Horizon – Part One

Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Dec 2020)

Let’s be realistic. There is never a good time to have cancer.

Even today, caution and years of fighting to beat the odds against surviving this insidious enemy have made it an almost certainty that no doctor will ever promise that the cancer will never return. 

You will learn, in the good times, to say, “I’m cancer-free,” or “My cancer is in remission.” And you will hope the remission is permanent, but you will keep that to yourself. 

You will not dare say, “I’m cured. It’s gone. I beat it. It will never return.” 

I learned those rules as a physician and got personally reacquainted during my own struggle, so in due course, I learned to play by them. But the more years I survived and the more knowledge I gained, the more I got calls from friends and friends of friends of friends. 

“How did you do it?” they asked. “What should I do?” 

Very few people have been lucky enough to escape being touched in some way by cancer. They have a friend or a brother or a mother who died, they have an uncle who is in serious condition, or they know the nice woman down the street who was just diagnosed.

I’m happy to be where I am today—a survivor for many years. I’m gratified that people come to me for answers about what to do. 

Now, today, this is what I can tell them.

Medical science is advancing at a break-neck speed. New and exciting discoveries are being made each & every day. We now have a broad and ever-expanding range of targeted therapies. Then there is this whole new field of immunotherapy that has improved the prognosis for so many cancer patients.

Today, we can look back on how we treated cancer as recently as the 1990s and equate it with the Dark Ages—a time when very little was really understood. By comparison to what we know today, treatments thought to be cutting edge in the 1970s and 1980s seem downright primitive. 

In the 1960s and 1970s, for example, doctors treated cancer in a one-size-fits-all manner. There were only a handful of cancer killing chemotherapy drugs that were used to treat every form of cancer in a “one size fits all” thinking—and, of course, with horrible & debilitating side effects. More often than not, a cancer diagnosis was a death sentence.

In the 1980s, things began to change a bit. Doctors would treat breast cancer differently than say, lung cancer, which would be treated differently than kidney or bone cancer.

But that was missing the point as well.

Over time, doctors began to realize that it didn’t matter where the cancer began. They saw that each cancer had its own particular histology and its own unique behavior. 

My cancer is a classic example. It started in the parotid gland but, under the microscope, looked just like the ductal carcinoma of the breast. The fact that it originated from the parotid gland, not the breast, is rather irrelevant. It is basically the same cancer and should be treated the same way. And later, when it spread to the lungs or the bones, it was still the same parotid cancer, not a lung cancer or a bone cancer. It just happened to relocate there. 

My cancer had a life of its own. It was unique. It did not matter where it started from or where it migrated.

Once doctors began to see that, researchers were at the dawn of the new concept of targeted therapies. Each cancer was unique to each patient. The treatment should be individualized, targeted, against that particular cancer based on its unique characteristics, behavior, and vulnerabilities. One size does not fit all.

Click Here to Read Part Two

Chronic Myeloid Leukemia (CML) Patient Profile

You would never know that the subject of this Patient Profile is living with cancer, and that’s exactly the way he likes it. Very few people know this patient’s story, even though he’s been living with chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, for almost 8 years. He is the very definition of an empowered patient. He’s informed, involved, and utilizes the resources available to him. If cancer were a bull, he definitely would have taken it by the horns. He prefers to remain anonymous, but he believes so strongly in being an empowered patient, that he agreed to share his story to encourage others to take control of their own cancer care.

It was March 2013, when he went in for an MRI on an unsatisfactory hip replacement, that his cancer journey began. When the report came back it said that there was a bone marrow infiltration with a high probability of malignancy. “The word malignancy stuck out to me,” he says. He had no symptoms at the time, but he couldn’t ignore the report and knew he needed to take immediate action.

His first step was to confirm that he did indeed have cancer. Coincidentally, he was pretty well connected with a prominent oncologist who diagnosed him with CML, told him it was easily treatable, and referred him to another doctor for treatment.

Not being the kind of guy to accept his fate without thoroughly gathering information, he decided to get a second opinion, and was able to do so through another connection he had. The second doctor confirmed the diagnosis and the doctor referral.

Satisfied that he was in the best possible hands for his specific cancer, he began treatment taking one of the four tyrosine kinase inhibitor (TKI) medications commonly used to treat CML. Unfortunately, he started having intolerable side effects so, in August 2014, his doctor switched him to another TKI. While taking the new medication, he says his liver enzymes went through the roof and he was becoming concerned that he was running out of treatment options. However, once again, he was able to use his connections to get dosage instructions directly from the drug manufacturer, and with a simple shift in dosing, his problem was fixed. His liver enzymes returned to normal and he’s been living well ever since. “If I had to get a bad disease,” he says, “I got the right kind.”

His proactive nature toward his health was essential to the positive outcome he’s living with today. In addition, his connections to high-quality doctors gave him an advantage. He is grateful for that, but he’s also acutely aware that not everyone has the same advantages, and that’s why he appreciates the value of Patient Empowerment Network (PEN). He came across the free programs and resources available on the PEN website while doing his own research about CML. He believes that anyone who is sick should use whatever resources are available to get all the information they can. “The Patient Empowerment Network is a source of information and potential support,” he says. “I’ve told my friends and doctors about PEN because I want to help other people. To fail to do so would be a shame.”

He feels a sincere and urgent duty to pay forward his good fortune and credits that sensibility to his parents and his Jewish heritage. Describing himself as only moderately observant from a religious standpoint, he says he was raised to subscribe to the philosophy that there are only two kinds of Jews. “You either need charity or you give it,” he explains. In his life, he’s been fortunate financially, and so he feels compelled to give. “It’s just who I am, I thank my parents,” he says.

His charitable giving is also motivated by personal loss. His first wife died from an aggressive form of breast cancer, and he later lost a very close friend to myelodysplastic syndromes (MDS) and acute myeloid leukemia (AML), which he refers to as a death sentence. The pain of that loss continues to be palpable and has driven him to set up a foundation, named after his friend, at a leading cancer center that does cutting edge research on MDS, a group of rare and underdiagnosed bone marrow disorders.

Now at 76, with his CML in remission, he’s vibrant and busy and has no intention of slowing down. He continues to stay up to date on CML research because he believes it’s important to be informed about his disease. He serves in a one-on-one mentor program for cancer patients, and he also takes evening courses learning about topics such as the United States Constitution and the Federalist Papers. “I’m lucky,” he says. “With CML I will die with it, not from it.”

The Warrior in Me Saved My Life

After experiencing increasing fatigue over the course of several years, I started to miss gatherings with friends and family and got to the point of taking one day off a month from work to sleep all day. This was unlike me as I was always very involved with professional and volunteer activities and had a very full schedule including parenting my young son with my spouse. After a lingering cold evolved into bronchitis, I began to explore what was wrong with the assistance of my primary care provider (PCP). I had mild persistent anemia, but nothing to warrant the degree of extreme fatigue that I was experiencing. She (my PCP) was very tolerant of my various Google-induced ideas, graciously accepting some to follow up with tests and others to set aside. 

After eleven months, a test showed that I had elevated M-proteins and my PCP sent me to a hematologist/oncologist who after greeting me reviewed several years’ worth of labs and then turned to tell me to come back in six months. She did not examine me. She did not ask me about my symptoms. She prepared to usher exit the room. I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my daily life. This is when the inner warrior in me said NO! I did not move from my chair. I told her, “Nope. Now is the time that I need to tell you about my symptoms.” (Now this was somewhat uncomfortable for me because I have been well-trained to be polite and professional with doctors, but I had had enough. My New York elbows were coming out!) 

I read from a list that I had prepared detailing what I had been able to do prior to feeling unwell and what I could do now. As I went down the list for several minutes, she looked at her watch in a disgruntled manner, finally asking me “What do you want?” I told her that I wanted to feel well. I did not feel well and believed that something was wrong. I wanted her to do more tests. She agreed and also sent me out to schedule an appointment in six months. One week later at 8 AM as I was on my way out to work, SHE called me to tell me that she had scheduled a bone marrow biopsy (BMB) for the next day. I cleared my calendar. The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow. My husband and I learned of this on the day before Thanksgiving. We were both in shock. We had so much to learn and at that point had no idea how much this diagnosis was going to change our lives. 

After a quick success of additional tests scheduled STAT, I started chemotherapy within two weeks. Getting a diagnosis took A LOT of persistence and determination when specialists minimized what I knew about my body — that something significant was wrong. And it was. Today is five years to the day of that diagnosis and I still wonder whether I would be diagnosed today if I had not INSISTED upon further testing. To her credit, the oncologist/hematologist did eventually acknowledge that I was right to press her to do more tests and that it was through my self-advocacy that I achieved a diagnosis.

What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating (again and again) for yourself with doctors even when your symptoms are minimized. I was trained to advocate for others as a social worker, but it took intentional work to give myself permission to say no to doctors at first politely and then later not so politely to demand additional testing until an outcome was achieved that explained my health issues. Be persistent. You know more about your symptoms than anyone else. Do not stop until you find out what is going on with your body.

The Power of a Gift

It sounds silly to think about stuffed animals—as a then-24-year-old—or anything really giving much comfort as chemotherapy drugs flowed through my veins, but as I have come to realize over two relapses is that the gesture matters. It is as simple as that.

Whether it was my first time receiving chemotherapy or my first relapse, it gave me hope knowing that people, even strangers, cared about my well-being. By the third time around, I was barely hanging on. Chemotherapy and radiation had drained me. I had showed up to the hospital looking and feeling like death.

My “Birth” Day

I call it my absolute worst and best day: Day 0, when I received my CAR T-cells in March 2019. It was the worst, because the two prior days of pre-conditioning chemotherapy had left me in a terrible state. Getting out of bed that morning, I had zero appetite, zero energy, and zero hope. I remember feeling so mentally and physically exhausted that I could barely stay standing while checking in for admission.

Upon being admitted, however, I noticed a stuffed green grocery bag tied at the handles. A nurse had placed the bag in my room, but rather than it be a part of an official hospital welcome, it instead came from a former patient. Soon, I was preoccupied with uncovering all the thoughtful gifts left by this stranger, while reading the hopeful note about how she had been in my shoes one year prior and was well again. What an inspiration this became!

I felt myself starting to regain strength. Then when the mutant T-cells, which had been re-engineered in a lab in California to attack my cancer cells, were being infused back into me, it was literally giving me a new life. On the outside, it was entirely uneventful—think of a typical blood infusion or draw. There was also a medical student who stayed to observe and chat with me through it, and it was that distraction with the sweet care package that allowed me to see that life would keep going. I would keep going.

Paying the Kindness Forward

Such an experience is what motivated me to start my own nonprofit and pay forward the kindness that I had received. (The next hardest moment was on my birthday a few days later, when the side effects of those T-cells landed me in the ICU for two days. What a way to celebrate, huh?)

In fact, completing graduate school during a global pandemic, while founding a nonprofit that helps others affected by cancer have become my greatest accomplishments since my diagnosis. Kits to Heart distributes thoughtfully designed, curated cancer care kits at hospitals and cancer centers in the Baltimore/Washington Metro Area community, as well as ships directly to patients nationwide. I have used my experiences and interactions with patients and social workers to pack the kits with informational resources and comforting products compatible with various cancer treatments. Just like receiving a care package from a survivor gave me hope and inspiration to pay it forward, we can inspire hope at the most difficult moments of treatments.

After Treatments

After undergoing more than anyone should ever have to, life is undoubtedly different. I go on more walks and hikes, for example. I have always enjoyed walking and taking in my surroundings, especially while abroad—but being on the verge of death multiple times tends to change your perspective on simple things like being able to take a leisurely stroll.

I also find joy by giving joy, especially to others affected by cancer. The very act of giving kindness reminds me that I am alive and reinforces the immense gratitude I have. From the scientists who believed in our own immune systems and pursued the research that resulted in CAR T-cell therapy today, to my resilient caregivers, I am thankful.

Yet, not everyone is fortunate enough to have strong support systems, let alone a ride to and from their cancer treatments. It is why I strongly advocate for giving joy in any way that you can when a loved one is diagnosed. Cancer is a lonely enough journey, full of anxiety and uncertainty. It hurts when friends or relatives stay silent during such a tough period. But I get it—given the circumstances, some simply have no idea how to help, while hospitals are not able to address all physical and psychosocial needs of patients with cancer.

These are persistent problems related to cancer care, but as long as I am able to, I hope that my story and efforts are able to provide hope and inspiration to those who need it. Especially during these times, a gift and the message it brings—that you are loved—mean so much. And for me, cancer has certainly taught me how to love and be loved.


Recommended Reading

Charles Graeber’s The Breakthrough: Immunotherapy and the Race to Cure Cancer

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

This month, I thought we could all do with a little quotation inspiration. When you’re dealing with cancer, some inspiring words can be just the thing to give you a daily lift.

Note this is not the same as saying that “thinking positive” is the best way to deal with cancer. While for some, a positive thinking mindset can help them cope, for many others, the tyrannical think positive brigade only makes us feel worse.

Thinking back on my own cancer experience, there were certain messages of hope and inspiration that I received which help bring some much-needed perspective to my situation.

So with the help of our community, I’ve compiled the following quotes and messages to inspire and uplift you today.


Julia (@juliabarnickle), turns to her own words of wisdom to get her through her various cancer experiences over the past twelve years. In particular this one: “Nothing in Life is worth worrying about.”

 

Nancy (@nancyspoint) also looks to her own words for motivation. “Be real. Be you. It’s enough,” she says.

 

Take a leaf out of Ilene’s (@ilenealizah) quotebook. “When inspiration moves to another neighborhood, I often reference poetry, especially Mary Oliver and Maya Angelou (And Still I Rise)” she says. “Yet I shiver in the cool winds of words whispered in history, my mind running wild as I open up my quotebook (notebook of quotes)‘ to add or to discover. I picked these randomly on purpose, and in no quantitative or qualitative importance of order:

 

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

 

“What lies behind us and what lies before us are tiny matters compared to what lies within us.” — Ralph Waldo Emerson

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”— Martin Luther King Jr.

 

“The knack of flying is learning how to throw yourself at the ground and miss.” —Douglas Adams

 

Sarah (@he4dgirl) shares with us a three-word quote from CS Lewis – one that I have turned to often myself: “Courage, dear heart.”

 

Another one of my favorites is from the author, Cheryl Strayed, who writes: “The place of true healing is a fierce place. It’s a giant place. It’s a place of monstrous beauty and endless dark and glimmering light. And you have to work really, really, really hard to get there, but you can do it. You’re a woman who can travel that far.”

 

Finally take inspiration from Cancer biologist, Triona (@NiTriona) and pass on some encouragement to another person today. Triona shares these words from poet and philosopher, John O’Donohue (Eternal Echoes) to remind us of the gift that encouragement bestows.

 

“One of the most beautiful gifts in the world is the gift of encouragement. When someone encourages you, that person helps you over a threshold you might otherwise never have crossed on your own.”

Reaching the Peak: Finding Resilience During Cancer

What does it mean to be “resilient” as a cancer survivor? Does it mean having the courage to remain positive? The strength to carry yourself into the next chapter of this “new normal” life?

In my opinion, having resilience or being resilient means all those things and more. However, resilience can also be built upon a collaborative effort made by both the patient and their healthcare team.

In the recent 2020 symposium held by the National Coalition for Cancer Survivorship, results were presented from a survey that stated patients believe that being proactive in the beginning of treatment can lead to better health outcomes. Part of being proactive on the patient side is asking questions of your care about diagnosis and prognosis, treatment options, physical/mental/emotional side effects, and short-term and long-term effects on quality of life. During the treatment process being proactive can also consist of contacting your care team with questions rather than guessing what “should be” happening, instructions on how to take medications, and any unexplained side effects.

Managing these side effects can also count as resilience. For example, speaking with a social worker or seeing a therapist may help with the emotional trauma of a diagnosis. Moving your body and getting your blood flowing by walking, running, yoga, and other forms of exercise can show mental and physical resilience. Most importantly, asking for help when you need it and being specific in what you need can show determination.

At the end of treatment, the journey is not over. Rather, it can feel like it’s just beginning. As you look back on how far you’ve come, contemplate if there’s anything you would’ve done differently. Maybe you were fearful, and now you’re more curious. Maybe you were afraid to share your story and what people would think of you. Now you know that none of that matters, except what you think, what you feel. Your story is powerful, your feelings are valid, and you have the courage to push forward.

Resilience isn’t something to be won; it’s something to be explored. Just like a diagnosis, it doesn’t come easy. But take a moment, breathe, and know that there are people rooting for you. Keep going.

Cancer: The Scariest Ride of Them All

June is home to National Cancer Survivors Day (June 7th), a day to celebrate the journey of survivors, who are defined as “patients diagnosed with cancer.” While there are multiple resources for cancers patients, including an entire website dedicated to the National day, I thought that I would share my perspective of what it means to be a patient/survivor on an emotional/mental level:

Emotional/Mental

  • Sadness and in denial when diagnosed
  • Angry that this is happening to you specifically
  • Hopeless because of a lack of control
  • Frustration when you don’t understand your treatment plan
  • Guilt knowing other cancer patients have it worse
  • Anxiety when preparing for a scan or an appointment
  • Betrayal when you find out who your true friends and family are
  • Hope knowing you may make it out on the other side
  • Strong when you make it through the next chemo and/or radiation treatment
  • Resilient when you’re declared “in remission
  • Fear that the cancer may come back

This is only a glimpse into the many feelings felt, the life that is suddenly a roller coaster with ups and downs and hidden twists and turns. Sometimes you may not hear the whole story, the emotions guarded underneath a face that tries to “be strong” through it all. Really take a listen when you, as a caregiver, a medical professional, a friend, or a family member, ask a cancer patient, “How are you feeling?” Look at the facial expressions, the body language, and the words they’re using. To summarize: Be present.

How to Create a Month’s Worth of Posts for Your Advocacy Blog

Are you looking for a way to boost your advocacy activities online?

One of the best ways to do this is to create a blog.  Blogging shows your commitment and passion for your cause and because a blog is interactive, it’s also an extremely effective way to build a community and engage more people in your cause.

If you are brand new to blogging, and not quite sure how to start a blog, this step-by-step guide will get you up and running.

Many of us who blog start out with great intentions of writing regularly, but over time our inspiration well can run dry. Creating a blog is relatively easy; the challenge lies in consistently creating fresh content. Cancer blogger, Nancy Stordahl (@nancyspoint) recommends a consistent blogging schedule if you want to develop a loyal readership. “This takes commitment,” she explains, “which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

In this article, I want to share with you a month’s worth of things to write about. Whether you’re new to blogging and looking for ideas to get started, or you’ve been blogging for a while but your writing has stalled, the following tips are designed to kick-start your writing efforts.  Commit to consistency by writing one blog post a week for the next month with these topic ideas as your guide.

10 Ways to Create a Month’s Worth of Blog Posts

1. Share Facts and Answer Questions for Your Readers

You might like to start by asking your readers what kind of questions they have that you can answer for them.  You could use Instagram, Twitter or Facebook to do this or you could search on a question and answer platform like Quora. On Quora you can ask a question about your topic or simply do a search using your topic keyword to find what people are asking about that topic. Make a list of those questions which you feel you could write about. When you have written a blog post on the topic, go back into Quora and answer a question related to the topic. You can include a link to your post in your answer.

2. Recycle Old Posts

Recycling content simply means taking one piece of content and finding a new way to create content around it. Identify your most popular content through your blog analytics tool. Now brainstorm some ways in which you can take this content and turn into a fresh post.  Can you turn it into a video or audio post? Are there any new research or treatment updates you can add since you first published this post? Can you get creative and create an infographic or develop a downloadable checklist using the original post as a starting point? You’ve already spent time and effort in creating your content, now spend a little more time to maximize that effort.

3. Compile a Glossary of Medical Terms

One of the things I remember most when I was a newly diagnosed patient was how mystifying the world of cancer was for me. I had to learn a whole new language consisting of unknown medical terms and scientific jargon to be able to understand my diagnosis. Make the process less mystifying for newly diagnosed patients by putting together a useful list of medical and scientific terms (as I did with this Clinical Trials Jargon Buster) and publishing it on your blog.

4. Share the Latest Medical Research in Your Disease Area

Have you been to a conference where you learned about new medical research? Or read about the latest research in a medical journal?  Let your readers know about it through your blog by providing a summary of the key findings and translating the information into easy to understand language for other patients.

5. Create a Reader’s Poll

There are several online tools you can use to create a readers’ poll. If you have a WordPress.com site, then you’ve already got Polldaddy polls built in. You can create, manage, and see results for all of your polls directly in your WordPress.com dashboard. If you use a self-hosted WordPress site, install the Polldaddy WordPress.org plugin. Once you’ve collected your poll data, publish a follow-up post with your findings.

6. Write about a Typical Day in Your Life

What’s it like to live with your condition on a day-by-day basis? What insights can you share to help others understand what a typical day is like for you and patients like you? Can you share helpful tips to cope with common everyday difficulties? Do you have advice for how family and friends can help you navigate your illness? As a person with lived experience you are in a unique position to shed light on what it’s like to cope with your illness by writing about it on your blog.

7. Embed Slide-Decks of Your Talks

Have you recently spoken at an event? Did you use slides in your presentation? Did you know you can upload your slide-decks directly to a platform called SlideShare? This is a great way to develop a portfolio of your speaking work and showcase it on your blog by simply inserting the embed code provided by SlideShare.

8. Invite a Guest Blogger to Write For You

Inviting another patient or healthcare professional you admire to write for you, not only expands your blog’s reach and readership, but adds a valuable new perspective to your site. For example, each week, Nancy Stordahl invites a different metastatic breast cancer patient to share their story on her blog for her regular #MetsMonday post.

9. Create Recurring Content

Creating regular recurring content, like Nancy does with #MetsMonday, is another excellent way to keep consistent with your content creation. Another suggestion is to create a round-up post each week – this could be a round-up of the latest research or a link to useful resources and articles you think would be helpful to share with your readers. Pick a day for this and stick to that day each week so readers know what they can consistently expect from you.

10. Plan Posts around Seasons and Events

This final tip is one of the easiest ways to create content on your blog that you can use on a regular basis. For example a post on how to survive the holiday season, or healthy eating during the holidays is a post you can use year after year. Add the dates of awareness days, such as World Cancer Day, to your calendar as a reminder to create content around these events.

Cancer, COVID, and Change

“There’s something to be said for not being a patient,” one of my doctors said.

“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.

I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked,  prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.

Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.

I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.

COVID Challenges

Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.

It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.

From Person to Patient

My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.

Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.

My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.

If surgery were scheduled today, my partner wouldn’t be able to stay with me.

The Shock of a Post-Op Diagnosis

This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.

In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.

My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.

It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.

At-Home Adjusting & Recovery:

Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.

Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.

Early Treatment: Chemo Buddies are Not Optional

Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous,  that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.

Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.

Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.

She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.

I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.

Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.

She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.

In-Between Hospital Visits: Public Services & Personal Support

 

Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.

Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.

The wig shops and stores we go to for hats and head coverings are often closed.

We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals. We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.

We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.

These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong. 

Later Treatment

We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.

We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.

I can’t imagine going to chemo alone, depleted, and with low white counts.

The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.

Maintenance Treatment & Clinical Trials

My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.

However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .

Have Some Changes Been for the Good?

The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.

Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.

To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.

“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….


Resource Links:

  1. The National Cancer Institute  guide: Coronavirus: What People with Cancer Should Know.
  2. American College of Surgeons: (ACS) Guidelines for Triage and Management of Elective Cancer Surgery Cases During the Acute and Recovery Phases of Coronavirus Disease 2019 (COVID-19) Pandemic
  3. Sample of patient visitation changes hospitals have implemented from Mass General Hospital.
  4. Telehealth at Dana Farber.
  5. Coronavirus (COVID-19) Update: FDA Issues Guidance for Conducting Clinical Trials

In this moment

“Is there a pressure to be positive all the time?” my friend Kathy asked.

It’s a good question. I said, “No,” and then “Yes,” and added in a “Maybe.”

But it’s not a simple yes, no, or maybe. It’s actually Yes-No-Maybe all at the same time. My kid is on Facebook and so is my family. My friends are on Facebook and they want the best or at least to know I’m not suffering. I’m aware of that and of them. But that doesn’t mean I show up fake or put on fronts. I don’t.

The pressure to be positive isn’t external. I am safe to be real with SO MANY people and that luxury is a gift beyond measure. The desire to be positive comes from within but it’s not motivated by pressure. It’s real. In general, I ACTUALLY FEEL positive.

And also, when my oncologist asks how my partner or daughter are doing, I say:

“Well, I’m cranky, lethargic, have chemo-brain, and obsessed with recurrence so that’s fun for them…”

That’s also real.

Real is positive.

So, when people say I’m strong, a rock star, a warrior, and a fighter, I can’t say I feel I am any of those things. My day to day to life has been changed and though I feel 100% half-ass as a mom, partner, friend, relative, and employee – I also know I’m doing the best I can.

I don’t even have much time to think of how I’m doing because I’m so busy doing, if that makes sense.

It’s like I woke up after surgery standing in the middle of a highway I didn’t drive myself on. The focus is dodging the cars going 75 m.p.h. on my left and right while feeling groggy and confused. When I manage to make it to the sidewalk or the rest area, the relief I feel is real. I’m happy to be alive and out of danger. It’s a genuine and consuming experience. I’m relieved any time I’m not in the road and also aware I could be dropped back on that highway in another minute, day, week, or year.

That’s the complexity and reality of living with cancer (#ovarian, high-grade serious, stage 3) that, even when it’s effectively treated, still recurs 75% to 85% of the time. To have no evidence of disease isn’t the type of blessing I’ve been in the habit of counting.

For decades, I have had the luxury of physical wellness and had never stayed overnight in a hospital. Health isn’t something I take for granted anymore but that doesn’t make me a warrior as much as it makes me someone changed by cancer more than by choice.

I used to think people were sick with cancer, and either mounted a “successful” fight and returned to living or lost “the fight” and died. It seemed either/or and as those were the two extreme outcomes.

I knew my mother HAD cervical cancer in her early 20’s and survived. I knew that my Nana and her two siblings had cancer in their 60’s, and did not. They died.

I know cancer is always a full-on fight for the person with cancer and those that live with and love them (us), but fights are won or lost and that is the problem with the “fight cancer” narrative. It’s way too simplistic for the complexity of cancer, cancer treatment, cancer survivorship, palliative care, and grief.

It omits the vast amounts of time that many of us live with cancer. We live with it in active form, or in remission, or in fear of recurrence, and sometimes with recurrence after recurrence. That way of living may last one or two years or one or two decades. We may have years we seem to be “winning” the fight and years we seem to be “losing.”

But winning and losing is far too simplistic. Some live and have loss. Some die and should be counted as winners.

I’d never known some fight the same cancer repeatedly, or “beat” it before getting another kind and another and another. I didn’t know that people cancer can be a lifelong disease and that some kinds are genetic time bombs in our bodies and families that can put us at risk even if we never smoked.

I didn’t know that one can have or five surgeries, that the side effects can start at the head (loss of hair, headaches, chemo brain, no nose hair, dry mouth, hearing loss), for example, and go all the way to the feet with lymph edema, joint pain, neuropathy, and that all the organs in between can be impacted as well.

I didn’t know that most cancer side effects are not from cancer but the treatments to fight, eradicate, and prevent more cancer.

I didn’t know that in addition to chemo, one might contend with liver or kidney issues, with high or low blood pressure, with changes to the way heart beats, the digestive symptom works.

I didn’t know that cancer surgery might include a hysterectomy and removing some or several organs, lymph nodes and body parts I’d never heard of. I didn’t know how it’s impossible to know what is from cancer, chemo, menopause or the piles of pills one is prescribed.

I didn’t know how much the body can endure and still keep going. I didn’t know I’d have a body that would have to learn and know all that I was mostly ignorant about -even though cancer is a disease not unknown to my own family members.

I am still learning and knowing and going. I hope what I learn keeps others from having to have first-hand knowledge of the cancer experience.

And even as I say that I know the ways I’ve been changed are not all bad, hard, or grueling.

I didn’t know that at, even in the midst of being consumed by all things basic bodily functioning (breathing, heart beating, eating, pooping, sleeping, and staying alive), one can also be grateful, satisfied, and appreciate life and loved ones.

I know it now and feel grateful daily.

Five months after my diagnosis, I’m what’s called NED (No Evident Disease). It means that after surgery, and then 5 rounds of chemo, a carbo/taxol combination every 3 weeks, there is no sign of ovarian cancer. My CA 125, a cancer marker in the blood, is back to normal. Things are looking better today and I’m grateful, optimistic, relieved, but also know that my life is forever changed, and I’ll never be out of the woods.

Despite my NED status, my chances of being alive in 10 years are 15%.

Despite my NED status, my chances of being alive in five years are less than 30%.

Did you know 70% of those with ovarian cancer die within five years of being diagnosed?

I’m not a statistic, but a person – still, it’s hard not to do the calculations.

5 years from my diagnosis I’ll be 57, and my daughter 21.
5 years from my diagnosis, my partner will be 62.
Will we get to retire together, ever?  Will I get 5 years?

It’s hard not to wonder if some or all of those five years are what most would consider “good” years and how I will manage well no matter what? And how my loved ones will fare…

So I focus on moments, days, and now.

My new mantra remains, “In this moment….”

It’s how I approach all of my days.

I do think and worry about the future, and even plan for the worst while also planning for the best. Because the best is always possible.

What if, I’m the 15% and live for 10 or more years? What if I make it to 62? What if a new way to detect, manage, or treat ovarian cancer is discovered? What if I discover some synergy in remedies and medicines not yet combined?

Maybe I will see my kid graduate college or start a career. Maybe I’ll help her shop for furniture in a new apartment. No one knows the future. No one guaranteed more than now.

Maybe I’ll get to go to Europe with my partner, elope and return married, or stay forever engaged.

Maybe I’ll attend a mother-daughter yoga retreat with friends like I’ve always wanted to do.

Maybe I’ll spend a month at a cabin writing and eating good food with my besties?

Maybe I’ll be able to be there for my family members and friends the way they have been there for me?

Maybe I’ll get to walk my dog at the same beach and park, with my guy, my brother and sister-in-law, and our dogs and kids?

I don’t know how much time I’ll get or what life holds.

I know when my Nana died in her mid 60’s it seemed way too soon. I know that now, if I make it to my mid 60’s, it will be miraculous.

I don’t put as much into my retirement savings.

I think more about how to spend time, and money, now.

These are not negative thoughts they are the thoughts of someone contending with cancer and wide awake while pondering my own mortality.

“You won’t die of this,” some have said. “Cancer won’t kill you.”

But no one knows that for sure. It’s not an assurance the oncologists offer.

People mean well when they say such things but I no longer bite my tongue when I hear these words.

I say, “I might die of this,” (and I think, but don’t say, and you may as well).

I do remind people that we are all going to die and few of us will get to choose the time or place or method. It’s not wrong to acknowledge mortality. It’s not depressing and it does not mean one is giving up. I want to be responsible, and quickly, as I don’t have the luxury to be as reflective as I used to be because cancer is all-consuming.

I’ve barely had a moment to reflect on the past five months never mind the last five decades. I am trying to stay on top of the bare minimum requirements of being alive. I can’t yet keep up with emails or phone calls or visits. Projects and goals and plans of all kinds have shifted, paused, halted, or been abandoned.

My energy is now a resource I have to monitor and preserve. My will is not something I can endlessly tap into or call upon to motor me and keep me motivated. There’s no resource I have yet to tap into or call upon. Each day, I must consciously and repeatedly work to fill the well. And now, when friends and family who work while sick, I no longer think they are tough or strong. I think of how we routinely punish and ignore our bodies. I notice how often we run on fumes, require more of ourselves than we have as though we will never tire out.

I think of all those who must or feel they must keep going no matter what, without pause or rest, oblivious to the toll it will take or of those who have systems that can’t fight their germs. And I think of employers who sometimes require it because they offer no paid time off.

I used to run myself ragged. I used to say, “I’m digging deep, into my bone marrow if I have to.” I wasn’t being literal.

Now, when my iron and my platelets go low, I think of my old words in new ways. Now, even my bone marrow isn’t what is used to be.

I’m entirely who I always was and completely different.

It’s both.

I am more and less of who I was.

My life and days are simple and structured now and also heavy, layered, and complex. Who and what fills my day, by choice and not by choice, is radically different.

Cancer changed my life. That’s irrefutable and will be whether I live or die in the sooner or in the later.

I speak with and interact with doctors, nurses, life insurance and disability insurance and pharmacists more. I spend more money on supplements, clean eating, and make more time to walk, exercise, and sleep. There’s so much less I am capable of.

But sometimes, even without hair, I feel totally like myself.

Sometimes, like this week, my daughter caught me in the middle of life, reading a book, petting the cat, on my bed in my heated infrared sauna blanket. I was relaxed and at ease.

I shared this photo and someone commented on how my “cat scan” was quite feline, – the image brought a whole new meaning to the “cat scan” image.

I laughed and laughed and laughed. I’m still laughing.

In this moment, in many moments, I’m humbled by the enormity of all things cancer and being alive. That’s real. That’s there. It can be intense.

But also, in this moment, I’m laughing.

And laughing, it turns out, is my favorite way to live.