I owe a huge debt of gratitude to my agent, Sara Megibow, and everyone at Nelson Literary Agency, for everything they do for me. Sara—you rock! I also need to thank all the awesome people at Zest—Hallie Warshaw, Dan Harmon, Tanya Napier, and Pam McElroy—thank you so much for your excitement, encouragement, and dedication to the project. Thanks to Holly Longstreth and Zach Dresher for keeping us organized. Last but not least: The biggest thank you goes to my husband, Don, who not only supports me in everything I do, but helped us to manage the website along with all the files and photos for the book. It was a huge undertaking he did not need to take on, but he did, and I am most appreciative. I love you, Don.
—Miranda Kenneally
If you liked Dear Teen Me: Authors Write Letters to Their Teen Selves, you might also like Regine's Book: A Teen Girl's Last Words by Regine Stokke.
Regine Stokke began to blog about her day-to-day life shortly after she was diagnosed with an aggressive form of leukemia in 2008. Regine’s stated purpose with her posts was to give people a sense of “what it’s like to live with” such a serious illness, and her blog became an almost instant classic. From being the kind of teenager who sulks when she doesn’t get a private room at the hospital, Regine gradually learns to face up to the terrifying implications of her disease, and develops a deep appreciation for life, for art, and for all of the people who surround and support her. Regine’s Book is Regine’s story as we encounter it on her blog, supplemented with previously unpublished texts, a selection of photos, comments from her readers, and remembrances from those closest to her. Regine’s honesty, bravery, and uncompromising nature are an inspiration. Through her eyes, readers will discover a more vivid world—and a new appreciation for life, art, and the power of the human spirit.
Keep reading to preview a sample of Regine's Book: A Teen Girl's Last Words...
Autumn, 2008
On being diagnosed with a serious disease
Tuesday, November 4, 2008
Disclaimer: I've decided to start a blog about what it's like to get a life-threatening disease. Some of the content will therefore be too heavy for some people.
The whole thing started on Friday, August 22
I had just come home from school and didn't have a care in the world. Then Mom walked in, and right away I realized something was wrong. She had tears in her eyes. The doctor had called, and they suspected leukemia. I had to go to the hospital as soon as possible for a bone marrow biopsy.1
Right away I felt like my life had been shattered. I was crying my eyes out. I had a million conflicting emotions, but more than anything else, I was scared.
At the hospital in Kristiansund they started right out with the tests. The biopsy wasn't pleasant at all—I was shocked at how painful it was. And then I had to wait three hours for the results. I sat around at the hospital with Mom and Dad until the doctor came in. We were nervous and scared. He had tears in his eyes: I had leukemia, more specifically AML (acute myelogenous leukemia2). I could feel the fear spreading all through my body when he said that. Cancer. The whole family was crushed. I couldn't stop asking myself: Is this a death sentence?
On Monday, August 25, we drove to Trondheim. That's where I had to go for treatment.
I was referred to the adult unit, where I had to take another bone marrow biopsy. This time it was going to be even more extensive than what they'd done before. In this kind of a biopsy, they have to drill out a bit of bone, and it's incredibly painful. I could feel my whole body jerk when the doctor yanked the piece out.
After that they showed us around the unit. It was like going down into hell. There was a small narrow hallway, old people, and one nineteen-year old. The first thing I thought when I saw him was “poor guy.” The doctor told me I might not get a single room. Damn it. I started crying. In the end though, I got my own room, but it was small and run-down. How would I manage to stay there for so long? I wondered. We asked the doctor if I could be placed in the children's unit. At first, he said no, but we kept at it, and the third time he said he'd try to arrange it. It worked. Third time's a charm.
After a while I was moved to the children's unit. They told us the cutoff age was eighteen. So then why the hell was I put in the adult unit in the first place? I get irritated just thinking about it. I'm glad I'm not eighteen.
The children's unit was much better—renovated and a lot larger. The rooms were big and had flatscreen TVs. There was even space for my family. My mood got way better, even though I still felt really sick.
On Friday, August 29, Regine's mother, Julianne, wrote in her diary:
We're now at Day 5 in the Trondheim hospital, and it's been exactly one week since we found out that Regine had acute leukemia. Who could have possibly seen this coming? In the blink of an eye we went from being blissfully unaware to being devastated by desperation, pain, and a sense of injustice. Why would this happen to our dearest possession—our lovely, intelligent daughter, who's never hurt anyone? Everything I've ever seen from her shows that she's a good person through and through. Still, it's happening; it seems unreal. Can this actually be happening? It's unbearable.
Our life was turned upside down in the course of a few minutes. Life isn't a given anymore (and that thought makes my head spin). It seems like I'm losing my grip on reality, like the world is slipping away from me, and it's driving me crazy.
The day before we traveled to St. Olav's Hospital, Regine and I went to the movies to see Mamma Mia, just to do something nice together, and so that we would be able to focus on something else for a bit. It wasn't easy to concentrate, and I cried during the wedding scene. The bride was wearing such a beautiful wedding dress, and I imagined what Regine would look like in a dress like that. I want more than anything to see Regine in a dress like that one day.
There were so many tears and it was so hard to sleep during the weekend before we traveled to St. Olav's. I was frightened of what lay in store for us, and worried about what Regine would have to go through—not to mention the emotional toll that this was taking on her.
When we arrived at the hospital on Monday, August 25, they took a bone marrow biopsy from Regine. It was brutal and painful, but she clenched her teeth and didn't make a sound. The doctors told us that there was no doubt that Regine had AML. After telling us what to expect and what could potentially go wrong, she was admitted to Children-4 (the children's unit for cancer and blood diseases) at 11:30 pm. They took great care of us there. The next step is to have another conversation with the new doctors.
Yesterday they took another biopsy, and then inserted a Hickman line. A Hickman line is a long intravenous tube inserted under the skin on your chest, and it's what they use to administer chemo and take blood tests. Here at the children's hospital, the procedure is always done under general anesthesia, and everything went well. When Regine woke up, she was still under the influence of the anesthesia, and we got to hear quite a few interesting bits of information. Among other things, she admitted that she and Silje had raided our liquor cabinet and tried a bit of everything, and that they almost broke a cognac bottle. The way she said it, in a slurred whisper, was so funny that Lasse and I had to laugh. She also said that Elise should move here and take dance classes at Trondheim…so that she could try out for So You Think You Can Dance. But eventually the laughter had to stop. After a while, Regine said she wanted an assisted suicide.
Regine has highs and lows emotionally. Sometimes she feels like she wants to die right away to avoid all the pain. But other times (most of the time), she's optimistic, and says she's going to get through this, and that she feels comforted at the thought of all the people who love her. As she put it recently, “You won't get rid of me so easily.”
I'm so impressed by Regine. She's so calm and strong and sensible—and talks very openly with doctors, nurses, and the other patients and their families. I'm proud of you, Regine: You're unique, and you're special, and I love you so much!
After a day of chemo, she's in pretty good shape and ha
s a good appetite. Eli Ann and Anne Marthe visited this evening, and the three of them sat in her room and had a little pizza party together. The girls brought pictures and decorated the room with them, and Anne Marthe's parents gave Regine a basket of goodies too. Regine's good mood (partly the result of all the drugs) has been rubbing off on us, too.
On Sunday, September 7, Regine writes in her mother's diary:
I can't sleep, so I thought I would write something here. This is my first night alone at the hospital. I guess things are going pretty well so far, but I'm still really scared, and afraid I might even have a panic attack. But they're taking good care of me here. I'm crying right now, but there are a few different reasons why. I read what Mom wrote and I was totally overwhelmed. And I'm thinking of all the great people who are supporting me through this tough time—both friends and family. Martin sent flowers twice. He really cares. Not many guys would do that.
Everyone tells me I'll get better, but I'm having a hard time believing them. I'm just so afraid of dying. What if I don't make it? What if I die… ? I'm scared of death. I have so much planned for the future. No one should die when they're seventeen.
I've been sick for the last two days. Fever. Have started taking antibiotics and am getting better, but visually, things seem to shift around a lot. I'm told the entire family is really upset and feeling pretty down about all of this. It's unsettling. They wouldn't be so scared if they knew I'd survive. And if I die, what then? It will destroy them.
Why did I take things for granted before? Why did this have to happen before I had a chance to realize how valuable life is? I'm only seventeen. It's so unfair.
A bit about what I've been through
Wednesday, November 5, 2008
As a lot of people probably know, chemo can have some complications. I had to have the strongest chemo cycle that they can give—at least as far as I know. The cycle lasted six days. It actually went okay, all things considered. You have to be prepared for blood poisoning (which I got), and E. coli in the blood is a pretty big deal, but they gave me antibiotics, and things eventually got better. With a temperature of 105.8 (and chills), there still wasn't anything to do but just wait for my blood count to recover. Unfortunately, my platelet count was so low that my spleen started to bleed. It hurt so much I couldn't get out of bed.
About the same time, I got some unexpected and shocking news. The whole time that all this was going on, the doctors had been trying to determine what subclass of AML I had. Apparently it was really hard to figure out, and they thought it had to be something pretty unusual. The answer came three weeks after I had my first bone marrow biopsy. I had something called myelodysplastic syndrome (“MDS”).3
MDS causes cells to function incorrectly; it makes the cells defective. I also have a defect in chromosome 7,4 which just developed randomly. No one knows why it happened. Technically speaking, it's not leukemia, but it's just as serious, and it creates the same symptoms and often gets treated the same way. Without treatment, the disease will eventually evolve into AML. MDS is a very rare disease, especially among younger people.
The doctors didn't think I needed more chemo because the disease wasn't progressing that quickly, but then one day, a doctor came in with a serious look on his face. The white blood cell count had gone up in a short period, so a new chemo cycle was urgent.
I was totally shocked.
To function, the body needs physical activity, and that was pretty much impossible considering how much pain I was in. I was lying down for so long that fluid collected in my lungs. The doctors thought antibiotics would help, but after a while, it just got worse. My lungs filled up with even more fluid and I had a lot of intense pain, and it became really hard to breathe. Things just got worse and worse, and pretty soon I had to be moved to the main intensive care unit. The nurses there were competent and easygoing, but I had such severe pain that I had to take morphine and a type of sleep medicine. A drain was put through my chest wall to remove the fluid. But finally it became so difficult to breathe that I was put on a respirator. I lay there for four days. It was horrible when I finally had to wake up, since it felt like I was suffocating. The first thing I did was try to remove the tube from my throat. I couldn't speak. So frustrating. I tried writing but it didn't go well because of all the medication.
Because I had intestinal inflammation, they had to feed me intravenously. But then my stomach kept getting bigger and bigger, so they had to stop the intravenous food. I couldn't eat or drink anything.
Eventually I was put into the children's intensive care unit. I don't know quite what to say about that, but it was really bad. I couldn't move for about two to three weeks, and I couldn't eat any food at first either. Eventually I was able to start on some real foods, but I didn't really want anything, and only ate about two pretzels a day. My stomach couldn't handle any more. I was also shown to have E. coli in my blood again. I was so cold that I shook. Thankfully, the antibiotics helped a lot. Someone gave me ten times more sleeping medicine than I should have had—just by mistake—which is pretty shocking, and makes me worried. Luckily they figured it out in time. A lot of what happened in the unit could have been avoided—but I won't go into that too much.
When I was well enough, I was moved back to the children's unit for cancer and blood diseases. Finally, I thought, a better environment. I stayed there for a week before I could go home. It came as a shock that it was even a possibility. I hadn't been home for ten weeks. My doctor and nurse were really happy for me. So was I (to say the least!). It wasn't that easy to get home though, because my body was dependent on morphine. I had some serious withdrawal symptoms but managed to travel home anyway without too many problems.
Tomorrow I'm traveling to Oslo for an informational meeting in advance of the upcoming bone marrow transplant. A donor hasn't been found yet, but they're saying it won't be a problem to find one; it just takes a while. Meanwhile, I'll probably need to stay in Trondheim for chemo.
1 In a bone marrow biopsy, small hollow needles are used to remove solid or liquid bone marrow tissue from the posterior pelvic bone for diagnostic purposes.
2 Acute myelogenous leukemia (AML) is a rapidly progressing bone marrow cancer in which abnormal, immature blood cells proliferate in the bone marrow and negatively impact the development of healthy blood cells. More information about AML is provided at the end of this chapter.
3 Myelodysplastic syndromes (MDS) are a group of diseases in which bone marrow stem cells have genetic defects that prevent normal maturation into healthy new circulating blood cells. Patients may have similar symptoms to those seen in AML. Aggressive forms of MDS may evolve into AML and some patients may have intermediate features that are somewhat in between.
4 Chromosome abnormalities, or genetic defects, in bone marrow cells are the initiating event which may result in the development of leukemia or MDS. No one knows for sure why these mutations happen, but some of the possible causes include toxic exposures, infections, and radiation. Chromosome 7 abnormalities often correlate with a more aggressive disease course and may prompt earlier consideration of bone marrow transplantation.
End of Sample
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