Monthly Archives: July 2019

Surviving Cancer/Sustaining Self 7: Medical Miracles and Good Luck

In prior posts, I described coping strategies that sustained me during my treatment for acute myeloid leukemia.  More recently, I noted factors beyond my control that nonetheless worked in my favor, including a privileged status, excellent care, and social support. Here, I describe additional factors that contributed to my survival.

One was generational timing. Put another way, my parents picked a good time to bring me into the world. As a baby boomer, I lived into my sixties before contracting a life-threatening disease that was incurable throughout much of the twentieth century. I am humbled by the fact that the stem cell transplant procedure that saved my life has only been available for a couple decades.

A brief history. The first successful bone marrow transplant occurred in 1968 at the University of Minnesota Hospital. A further advance came when French researchers transplanted stem cells from umbilical cord blood in 1988. The first successful cord blood transplant in the U. S. followed in 1995. The Blood and Marrow Transplant Unit at the University of Minnesota Medical Center has since become a leader in umbilical cord blood research and transplants. In the fifteen years before my diagnosis, they performed almost 1,000 such transplants and were routinely achieving successful outcomes.

As a beneficiary of this medical progress, my procedure began with a week of high dose chemotherapy and full body radiation that destroyed virtually all my diseased bone marrow and white blood cells. That paved the way for a genetically matched, umbilical cord blood transplant. The “transplant” is not a surgical intervention; it is simply a transfusion of donor blood that introduces new stem cells into the body.

Once there, the stem cells just “know” where to go to begin producing new bone marrow and all the cells needed for a healthy immune system. The umbilical cord came from one of the donor banks that have only been established in recent decades but are now available world-wide for patients seeking a cord blood donor.

In addition to this medical miracle, I also benefitted from some old-fashioned good luck. As a poker player, I have often pondered the parallels between playing that game and making life decisions. Both require acting with incomplete and imperfect information, and the stakes can be quite high.

If we draw on our rationality and intuition, we can assess the risks, calculate the odds, check our gut, and make the best decision at the time. In the case of my transplant, the “house” was offering odds any poker player would relish, but the downside was a 15-20% mortality rate from the procedure itself. So, I could expect to “win” at least 80% of the time, but otherwise, it would be game over.

That sobering scenario led me to take my time, do my homework, examine my options, get second and third opinions, and reach a measured decision to go ahead with the procedure. As good as such decisions may be, however, outcomes in poker and life are still subject to unpredictable and unknowable factors. For all our proactive efforts to control outcomes, it’s healthy to retain some humility in a universe that can still roll dice with our fate.

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing. Learn more at Steve’s website.

 

 

 

 

 

 

 

 

 

A Lifelong Illness

Aloha everyone!

My name is Jenny Duhaylonsod Delos Santos, and I was diagnosed with bipolar disorder in 1997. At that time, I was staying up all night, still had lots of energy to do whatever I had to do. Because of not sleeping and other symptoms, I ended up in a psych ward at Queen’s Medical Center in Honolulu, Hawaii.

Due to experiencing drastic guilt and depression, the doctor introduced me to electro convulsive therapy, which is one of the fastest ways to relieve symptoms of a depressed patient.  The therapy helped me a great deal, and I had ECT for a couple of months, but stopped the therapy because of memory loss.

I would like to be a spokesperson of bipolar depression, because there’s so much negative stigma, which surrounds the lifelong illness.

First of all, bipolar disorder is a mood disorder that affects five million adult Americans from all walks of life.

The most common symptom associated with bipolar disorder is mood swings. Individuals who have bipolar experience high euphoria and happiness that is followed by depression.

The symptoms of “mania” include experiencing feelings of abnormal excitement, euphoria or elevated mood. They also sleep less than normal, however, still have energy. Those with bipolar also feel very hyper, agitated, easily distracted or irritable as well as experience lavish spending.

The “lows” (depression) symptoms include having a loss of energy; eating way to little or too much; not being able to remember things, hard to concentrate and/or make decisions.

Lastly, they always experience thoughts of suicide or death.

The following are ways in which individuals with bipolar disorder may be able to deal with their illness: he/she should be educated about their illness; take their medication daily; have weekly therapy or counseling; and have lots of support from their friends and family.

There are well-known actors and actresses who have been open about having bipolar, including Carrie Fisher, who is Princess Leia in the Star Wars trilogy. Fisher was diagnosed with bipolar at age 24. When she first came out and admitted she had bipolar, it was like a bright light for people, showing others that they can achieve their goals even with a mental illness like bipolar disorder.

Mahalo everyone for taking time out to read my article!

 

jennyJenny Duhaylonsod Delos Santos is from Honolulu, Hawaii. She is married and has two children from a previous marriage. She’s an editorial clerk for the Honolulu Star-Advertiser and has been working there for the past 16 years. Her memoir was recently released by Written Dreams, which is about her experience with domestic violence and the journey it took to overcome an array of mental illnesses that stemmed from all the abuse she went through from her first marriage.

Addiction Diaries: Lucky Boy

Addiction is an irresistible craving for a drug, leading to out of control use, and continued use despite consequences. 

As a physician practicing in acute care I’ve seen many terrible things. But what has surprised, shocked and saddened me the most is when I’ve dealt with cases of addiction. The consequences can be severe, even fatal. It’s important to talk about it and acknowledge that it exists. Because addiction is a long term problem and social/family support is perhaps the most important factor for recovery. The aim of this series is to inform and raise awareness, not to sensationalize. Whatever I write is based on facts and facts alone.

The following is based on true events:

RM is only 21. “Don’t be surprised doc. He’s tiny!” His nurse informed me before I stepped into the room. So he was. Tiny (barely over 5 ft, under a hundred lbs) and young. His innocent face belied the colorful life he’d led so far. RM had been admitted because he had popped a couple of fentanyl tablets he’d bought on the street  (the same drug that was found in Prince’s and Tom Petty’s system). When I inquired why, he said he’d been taking the drug for the past 6 months or so; 2 to 3 a day “to get high that’s all” he informed me as if talking about the weather. “No, I don’t want to kill myself but I get depressed sometimes;” was his response when I asked if he’d had any intention to cause harm to himself. I tried to maintain a straight professional face but I was flabbergasted. I was shocked he was still alive. The lethal dose of fentanyl is very small– a quarter of a milligram, and this young man had consumed several times that. He was one hell of a lucky boy. 

Fentanyl is the most powerful opioid/narcotic drug—100 times more potent than morphine (the usual drug used to treat pain) and 50 times more potent than heroin (the common street drug). All opioids bind to the opioid receptors in the brain and block pain signals (hence are used to treat pain), at the same time they produce sedation and euphoria by increasing the levels of the neurotransmitter dopamine producing the ‘High’ or ‘Feel good’ sensation we commonly hear about and what people get addicted to. Opioids also depress the breathing center in the brain thereby causing respiratory arrest which is the usual cause of death. Fentanyl is a highly controlled opioid and is usually prescribed to treat severe chronic pain in the form of slow release patches and as lozenges, lollipops and tablets for breakthrough cancer pain. In the hospital it is administered intravenously under closely monitored state. It is vital to know that Fentanyl should not be used to treat acute/short term pain and in someone who is opioid naive (has never been prescribed/taken opioids). 

The details about my patient poured in gradually. I learned the young man was on parole. He’d gotten into trouble for an alcohol related problem– and had been ordered by the court to attend rehabilitation classes. So, as he could no longer drink, he switched to another source (not an uncommon occurrence under such circumstances). And no, this young man was not a derelict or an orphan. He had a very caring mother who told me how terrified she was as she didn’t know when she was going to lose him. She was at the end of her wits. In fact, it was she who’d saved his life. She was his chaperone who was driving him home from the class when he passed out in the back seat then went ‘blue’ and started convulsing. She drove him to the ER which luckily happened to be just around the block. He was immediately administered a fast acting antidote called Naloxone, and revived. His life was saved, following which he was admitted for observation. What had happened is that Fentanyl, had suppressed the breathing center in RM’s brain, causing him to stop breathing. He’d have been dead if the effects hadn’t been reversed in a timely fashion. 

His mother was a brave soul. I guess she’d been through similar circumstances before hence had acted quickly. Many victims aren’t so lucky. Though her son had overcome death for the time being, there was no guarantee this wouldn’t happen in the future. She begged me to send him to rehab. She was tired and exhausted. At the end of her wits. I didn’t want to be in her shoes. I too have a teen daughter. I can’t imagine how I’d have reacted in a similar situation.  Even though RM appeared motivated to quit (or so he told me) the likelihood for relapse was very high, despite rehab, family support and so on. I know since I’ve seen it because these drugs bring about long lasting changes in the brain.Therefore, it’s important to avoid triggers and not give up hope even if relapse occurs. 

Young people are curious. They want to conquer the world. They want to experiment. It’s in their nature to be impulsive. They are also defiant and would rather go against than heed good advice. The teenage years are the most crucial as seeds of addiction are most readily sown during this time. Not that adults are spared. It takes only a few days to get addicted to a certain drug– so next time your dentist prescribes something for a toothache think twice and if you do indeed have to take the drug do so for the shortest time.  

But as we are all aware addictive substances are available on the streets under various names and formulations causing various effects, but did you know they are also available OTC (over the counter) in your local medical store or pharmacy? Things like cough and allergy medicine, decongestants, motion sickness pills. Sometimes when one drug doesn’t produce the desired effect, people take a cocktail which can include pain pills, sleeping pills, antidepressants, muscle relaxants, cough medicine. 

My advice to everyone out there (young and old) is to say NO– to drugs, alcohol, tobacco etc. You never know when that one glass of wine becomes two, or three or more, or that one pill becomes a dozen. If they say it’s cool to do so, tell them it’s not cool to lose your life.  

Dear parents- Talk to your kids, learn about their likes and dislikes, encourage them to share their fears and anxieties. Inquire about their friends and peers. Keep the channels of conversation open all the time. Assure them of your support. 

And if you choose to smoke, drink or indulge in risky behavior avoid doing it before them– as young people tend to mimic their parents. 

PS: Please feel free to share your thoughts and experiences as well. Thanks for reading!

simi blog imageDr. Simi K. Rao, creator and founder of The MedBag is a board certified internist and hospitalist currently practising in the Denver area. She has special interest in preventive medicine. She is also a published author. You can learn more about her work at https://simikrao.com//

 

 

Surviving Cancer/Sustaining Self 6: Privilege, Care and Support

In previous posts in this series, I described several coping strategies that sustained me throughout my prolonged treatment for acute myeloid leukemia. Here, I describe how my healing and recovery occurred in a larger context that was unusually privileged and highly favorable for my successful outcome.

First, my employer provided excellent health insurance that covered virtually all my major expenses. My longevity in my position earned me a year of paid sick leave, covering the period from the onset of my disease to my retirement date.

After retiring, I maintained a version of this same good health insurance and began receiving a significant pension. Thus, I had the good fortune to not have to worry about financial constraints on the decisions I made and the care I received. (My privilege should be everyone’s right in an “advanced,” industrial nation, but that’s a whole other talk show.)

There was an interpersonal aspect that worked in my favor as well. As a highly educated, professional white male, I was taken seriously and treated respectfully by everyone I encountered. When I responded in kind, all my interactions with medical personnel were congenial and productive. This helped give me the confidence to be my own advocate.

My self-advocacy reminded me of a friend (who is a registered nurse) who believes every hospital patient needs an advocate to represent their needs while navigating the complexities of hospital care. If they are unable to play this role themselves, a caregiver advocate should be assigned to them.

Another positive factor was the quality of care that I received throughout my treatment within two major hospitals. There were, of course, too many forms to complete, some silly bureaucratic impediments, and some truly awful hospital food. But when it came to the important things, the care I received was superb. My doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. Suffice it to say, my stereotypical views of the medical profession have been forever transformed into a profound appreciation.

Alongside that care, it would be impossible to overstate the benefits of the social support I received from my spouse, relatives, friends, neighbors, and colleagues. Through their hospital visits, phone calls, emails, get-well cards, gifts, and the key lime pie my wife and her sister smuggled into my room, I was continually reminded of how many people were pulling for me, praying for me, thinking of me, and sending me positive vibes.

I am deeply grateful for my privileged status, excellent care, and social support. And I’m acutely aware that others without my privileges may not receive the same level of care. For me, these privileges made it much easier to implement the various coping strategies outlined in previous posts. But the inequalities of privilege are also a reminder that however much we may try to control our destiny, outcomes are always intertwined with larger forces beyond our control.

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing. To learn more visit Steve’s website.