From Parents’ Magazine, November 1977
I am Andy Carstairs. Okay, I’m not. But that was the name given to me for an article that was written in 1977 about childhood leukemia. I knew this article existed–I saw it growing up, but only recently did I try to find a copy. Thanks to the good people at Parents Magazine, I now have a scanned copy. (And no, that’s not me in the picture below.)
It’s interesting to read about my story so many years after my diagnosis with acute lymphocytic Leukemia (now more commonly referred to as acute lymphoblastic leukemia or ALL). From my diagnosis in 1972 at age three to when I stopped taking my chemo pills at age seven, I never knew the pharmaceuticals I was taking. I only knew I had two white pills to take on Monday, one long one on Tuesday, six little yellow ones on Wednesday, etc. I now know what I received, and I can compare that to what the standard therapy is today. We’ve come a long way, baby! The article mentions, and I certainly remember (WAY too many) bone marrow aspirations and a lumbar puncture (spinal tap) or two (or three or a dozen). The article even said I had intrathecal injections! I don’t remember those, but hey, while they were drawing fluid out, they probably put some drugs back in without even telling me.
The article states some statistics, which are pretty scary looking back. I was lucky to have been enrolled in the clinical study for which much attention was paid to the treatment and outcomes. In fact, the article says that due to successful results in one arm of the study (not my arm), the patients in the other arm were retrospectively given additional treatment. It’s for this reason that I was given radiation treatment at age six. I didn’t question the additional treatment. I knew I had Leukemia, so I took the medicine (treatment) my doctor and mother told me to. Now I know why I needed radiation therapy. I accepted it unconditionally. Although, the permanent marker lines on my face that were used to line up the x-ray machine for each session, to avoid nuking certain critical parts of my head, were a drag. I was called “Indian” on more than one occasion that year. That hurt.
The relationship between me and my doctor was also explored in this article. From my perspective, the role Dr. Dvorak played was very much understated in print. Dr. D. was the most valuable member of my support team, second only to my mother. I will forever be grateful to Dr. D. (and to Mom, Sara, and Pasty & Dick). The role of a support group for a cancer patient, of any age, cannot be minimized. The patient’s team is critical.
Forty-four years after my diagnosis, I’m very thankful to have this personalized summary of my treatment.
If you are interested in reading the article in full, please send me a message through the Contact Me page and I’ll share a PDF copy with you.
I just re-read Little Brother by Cory Doctorow. It was my third reading.
Although published in 2008, intended (I believe) to look back on the heightened security and information-gathering by the Department of Homeland Security, the book is becoming more applicable to the current administration. Every day a new order is passed or legislation proposed that limits the freedoms of at least one segment of the population: women, Latinos, Muslims, LGBT people, etc. Every day we read another example of the current administration trying to subvert the Constitution.
Before the recent presidential election, I thought of DHS as a bloated, ineffective, bureaucratic agency. Yes, DHS, or Big Brother if you will, is watching but not an imminent threat. In my Sue series, I use DHS as the overseers of the clones. Ted Stevens is the level-headed DHS Director with the best interest of clones in mind; he releases the clones and protects their individual liberties. Whereas the special DHS committee is the xenophobic “protector” of American citizens against the “aliens” and their “conspirators”. Of course civil liberty wins in my books as Ted fights for the clones. To me, it was obvious. Up until now, I didn’t think the opposite was plausible this day in American society, with as much transparency as the internet offers.
But now I’m not so sure. Every day we learn of violations and abuse of power, which gets us back to Little Brother. As I read the book this past week, I didn’t think back to 9/11, I thought about current events in American politics. How long will it be before DHS starts invading the freedoms of Americans? As long as the administration finds a reason to marginalize a segment of society, there’s no telling what the DHS, Department of Justice, Department of Health and Human Services, etc. will do. Look at what has already been attempted or floated in barely two months! Proposing to eliminate funding for Planned Parenthood, repeal of parts or all of Roe v. Wade, eliminating pregnancy care from Trumpcare, building “The Wall”, mass deportation of “illegals”, prohibiting suspected Muslims from entering the country, and repealing LGBT equality laws are just some of the few ideas/legislation already being discussed. What is going on? Are we going to allow this to occur?
At the end of Little Brother, Marcus makes a video to show the imprisonment and torture he experienced at the hand of DHS and, more importantly, he gives advice. His advice is completely applicable to right now. “We elected these people. We pay their salaries. They’re supposed to be on our side. They’re supposed to defend our freedoms. But these people betrayed our trust. …Find five of your neighbors—five people who’ve given up on voting because their choice is ‘none of the above.’ Talk to your neighbors. Make them promise to vote. Make them promise to take the country back from the torturers and thugs. Make them promise to talk to their neighbors. Most of us choose none of the above. It’s not working. You have to choose—choose freedom.”
One last thing; open this tweet and look at the books assembled on the table at this bookstore. It’s a commentary on the times.
Please read Zac and Mia.
I recently posted about good and not good cancer books. For me, a good cancer story is one that inspires, where the patient fights to win, and hopefully does win. On my list of must-read books are Radiate, Touched by Cancer, and The Fault in Our Stars. I am now adding Zac and Mia to that list of must-read books. You can read my full review here on goodreads.com.
What I like best about the book is that the two, Zac and Mia, fight their cancers and treatments. They get busy living. And they are there for each other. The two are not always bubbly and happy. Each has dark times of despair when they want to shut out everyone and everything, and there are times when they resent knowing the other person. But at the bottom, when Mia needs inspiration from someone who doesn’t pity her for her leg, Zac refuses to let her run and offers her a place to stay. And when Zac refuses another round of treatment, Mia pushes him, convincing him to continue.
The story is realistic; the author, although not a cancer patient, definitely knows her subjects. She is a teacher on an adolescent cancer ward. The details of the care and treatment were believable, not glossed over for lack of understanding. And most importantly, I got to see and feel the emotions of Zac and Mia throughout their journeys while apart and together.
I highly recommend you read Zac and Mia.
Alien species sends goo to Earth?
“So what’s this,” you ask, “about aliens?” In my Sue’s books I had to invoke supernatural means to clone people on Earth. So, because it’s fiction, enter the aliens. The “goo” mysteriously arrives across the United States over a few weeks. Teams of public servants and scientists search for and find the goo in various physical conditions. Some of it was slimed on the pavement or blobbed on hoods of cars, other goo is found contained in flexible spherical pods. So where did it come from? Ted’s friends, the scientists at Manhattan Laboratory Services, deduce the goo fell to the ground. Was it dropped from a plane? Who would fly around and drop pods of goo that clone lab mice, a substance so complicated it’s not natural–at least not to Earth. No, it came from aliens on another planet.
“Hang on,” you say, “the goo would burn up in the atmosphere.” Precisely. And that confused the scientists until they found a hard, rock-like sphere that had safely landed on Earth–through the convertible top of a woman’s car, cushioned by her leather seats. They cracked open the sphere and found a pod of goo inside. They also tested the porosity of the rock and determined it was ceramic, hard enough to survive entry into the atmosphere–the same as the tiles on the space shuttles that used to re-enter after a trip to space.
“How would an alien species know to send goo specifically to Earth?” you ask. “And where was the alien planet?” As mentioned previously, the goo contained the memory of the alien species. And the properties of the goo made some advantageous mutations to the clones’ DNA that led to physical attributes to help the clones, and their offspring, survive on a warming planet. The scientists concluded the aliens purposely sent the goo from their planet. They also concluded the aliens simply blasted the goo all over the galaxy, hoping to find at least one planet where the goo would work. The aliens would have no way of knowing specifically that their goo would work on one single little planet on the edge of the galaxy. By launching the goo throughout the galaxy, the aliens would increase the probability of finding a planet or planets where the goo would be successful. As to where the planet was, the scientists couldn’t say for sure. It depended on when the goo was blasted into space and how fast the spheres traveled. Knowing those variables, the scientists could calculate how far away the planet was. If the spheres traveled near the speed of light and were sent only a few thousand years ago, the planet would be relatively close to Earth. If launched at twenty to fifty thousand miles an hour at the time the dinosaurs went extinct on this planet, the alien planet would be on the other side of the galaxy. But since the scientists knew they could not determine the speed and time, they could not determine where the aliens lived. They could only guess.
Although my books are fiction, I use science to plausibly deliver the key element of the story to the scene. The characters in the book don’t simply accept the arrival of the goo. They search for clues and conduct experiments to study the goo, pods, and spheres to determine their origin.
Please allow me to rant.
A while back I read Me and Earl and the Dying Girl. Many reviews lauded the story, but I gave it one star. You can read my review here. Why so harsh? I read this “cancer book” expecting a story about the cancer patient, her emotions and experiences. I got none of that. In fact, Rachel is a minor character who has simply given up. I could not accept that she, at her age, would not fight her leukemia, a treatment that has a high success rate these days. I was generous to give the book one star.
Why the rant? I am a cancer survivor–acute lymphoblastic leukemia, diagnosed in 1972 when I was three years old. When I read a book about a cancer patient, I expect to learn about the character’s emotions and experiences. I want to see the ups and downs, the denial, the fear, the strength to fight. When an author writes a book to tell the story of a cancer patient, I expect to read about the patient.
I just finished another book that fell short of meeting my expectations: Side Effects, by Amy Goldman Koss. You can read my review here. The book tells the diagnosis and treatment of a 14 y/o girl and her reaction to it. But because the author is not the patient–she’s actually the mother of the cancer patient, the true emotions and experiences of the patient do not come through. The book is more about snarky dialogue between a girl and her family/friends.
Bottom line; if you write a cancer book, either (1) be a patient yourself and tell your story with your own emotions, or (2) be intimately involved with the patient and share the patients emotions–all of them–with your readers. Readers want to feel the emotions of the main character.
A mainstream book that hits the mark is The Fault in Our Stars, by John Green. You can read my review here. I liked this book because we saw the emotions the main characters go through. I wasn’t happy as I read, but that’s because I could feel the same emotions they experienced.
Two lesser known books that I think are worthy of high praise are Touched by Cancer, by Teri Rose and Radiate by Marley Gibson (related post). These stories pull the reader in and share the main character’s emotions and their experiences. If you’re looking for two good (real) cancer stories to read, I suggest both of these.
Please feel free to share your favorite “cancer books” and why you recommend them!
just started finished binge-watching Orphan Black and have noticed many similarities between it and the three books in my Sue series: Sue’s Fingerprint, Sue’s Vision and Sue’s Voice. If you like Orphan Black, you’ll like Sue!
Of course the Sue stories were not written to copy Orphan Black and vice versa, but the two have similarities.
In Orphan Black, Sarah and her sisters, along with all the creepy brothers, were intentionally cloned by Projects Leda and Castor. In the Sue trilogy, the clones were intentionally cloned by the alien GOO, a substance sent to Earth by a dying alien species. Someone intended to make the clones. Sue and the others were cloned to survive on a dying planet and pass their genes onto future generations. Sarah and her siblings were cloned to prove the concept of cloning for future population growth.
Sarah and her sisters freely live separate lives in society. (I’m not sure if or how many of the brothers do.) They didn’t actually know about each other, nor did they even know they were clones, until their paths crossed. Mrs. S knew, but did not tell Sarah until she started uncovering clues. In the Sue books, the clones are initially contained together as an alien threat. But as their government handler, Ted Stevens, found out, the clones have a higher purpose. Eventually, he released the clones, establishing new lives in society for them.
Although the clones in both series live separate lives, they always come together to help each other get out of trouble. Sometimes that means they get into more trouble, but the clones have a community bond that can’t be broken. And each set of clones has their own handler, as well as the evil corporation or government agency trying to control them. Mrs S. handles Sarah and the other sisters while Topside tries to terminate them. Sue and the clones have DHS Director Ted Stevens to monitor their activities (and help them out of trouble) while the special DHS committee, led by General Gilmore, tries to eliminate the threat from the “alien invasion”.
DNA plays a big part in the two series. In Orphan Black, the complete gene sequence of the clones is the key to unlocking the secrets of the sisters and brothers. In the Sue books, testing the clones by the DNA fingerprint test is first used to prove the clones’ DNA is identical to that of their original people. With identical DNA, Ted convinces the special committee there are no differences between the clones and the normal citizens who happened to touch the goo, allowing him to release the clones from containment on the abandoned military base. (Hence the title Sue’s FINGERPRINT) But later in the Sue series, the complete genome of the clones is sequenced, revealing small mutations specific for the clones. There is a marker in the DNA that can identify Sue and the clones. Sarah and her sisters also have markers in their DNA sequence that identify them.
What about the differences detected in the clone DNA? Whether unintentional or intentional, the clones in both series have genetic mutations. In the case of Sarah and her sisters, the mutations lead to infertility, which doesn’t (for a reason that has not yet been revealed) seem to affect Sarah and (?) Helena. For the brothers, the mutations lead to encephalopathy or other brain damage. (Bummer for the brothers.) For Sue and the other clones, the mutations were introduced during cloning by the goo and resulted in phenotypic changes that help them survive on a dying planet. They learn and develop very quickly. They are able to modify their metabolism in times of hunger or thirst, and regulate their body temperature as the temperature of the environment increases. They are sensitive to UV radiation that forces them to wear sunscreen. The clones in the Sue series pass these mutations, these advantages, on to offspring to help save humanity from the effects of a warning planet. Over many many generations, the clones’ DNA will become the dominant DNA. I do not yet know what will result from the mutations in the DNA of Sarah, her sisters and her brothers.
If you enjoy Orphan Black, I think you’ll like reading my Sue series. There are many similarities between the two which should entertain readers of my books. Give Sue a try! Do the Goo!
Testing the clones’ DNA
Ted Stevens, the DHS director assigned to contain Sue and the other clones, begins to understand the clones. He sees them learn and develop friendships. He does not share the same view as the special committee–the General and his minions, who believe the clones are aliens and should be locked up forever. Ted contracts with his friends at the laboratory to conduct DNA testing to prove the clones are just that: copies of their original people who touched the goo.
There are different kinds of DNA testing that could have been conducted. There are general DNA tests, fingerprint analyses (hence the name of Sue’s Fingerprint), and there are detailed tests, complete DNA sequencing. In the DNA fingerprint test, a person’s DNA is isolated and clipped into large pieces that are then separated for detection. The pattern of the DNA fragments is unique for an individual. The chances of two people having the same fingerprint are very very low. This is why the fingerprint test is used for paternity/maternity determinations, comparing the mother’s and/or father’s DNA to the child’s. It’s also used in criminal cases, to compare DNA recovered at the crime scene to the DNA of a suspect. In the more detailed test, the entire sequence of the base pairs (the order and pairings of the A’s, T’s, C’s and G’s) is determined for the whole genome of the subject. Every person’s DNA is different, and the differences are unique. An individual’s sequence can be compared to other genomes to identify the specific differences or mutations. The DNA fingerprint test can be conducted in a day or two, but the sequencing test can take months to complete.
In Sue’s Fingerprint, Ted uses the DNA fingerprint test to compare the clones’ DNA to the people who touched the goo, the people from whom they were cloned. When the DNA fingerprints of the clones come back identical to their other people, Ted knows the new people are just that: people. They are not aliens. The clones are humans. This test is the evidence Ted needs to release the clones.
In Sue’s Voice, Ted wants to learn why differences in the clone’s behavior have surfaced, including the behavior of the newest clone, Suzanne Theodora, the daughter of Donald and Denise. The DNA sequencing reveals many small differences or mutations that distinguish the clones’ DNA from human DNA. These differences are so small that they do not impact the fingerprint test. That is why the clones’ fingerprints matched their original people’s DNA. But when the special DHS committee steals the sequencing results, they know they have the test that can identify the clones, giving them the evidence to imprison the “aliens” and prosecute them as enemies of the government. (Even Ted is imprisoned with the clones for aiding the “alien invasion”.)
DNA testing in the Sue series is used to help the clones, but also harm them. Thankfully, Ted and the clones know how to fight back. Read the science and adventures in all three stories of Sue and the clones!