All · about · my · hodgkins

Im graduating from college in May. Which is awesome, I really need a break from school. But now what? I know everyone has these worries, but I really thought I had it all figured out and blah blah blah. I want to do everything. Really. I have a very long list of things I want to do and I feel like I'm working against time in two ways. Grad schools don't want you to stray to far or for too long from your concentration or whatever its called in grad school. Thats really the least of my worries, and can be easily worked out.

I'm waiting to get cancer again. Its like I can't picture myself being cancer free for the rest of a long life. Actually, its not "like" that, it is that. What do I do? Especially since many of my plans do not include having health insurance ie traveling and working latin america.
Its so scary. Seriously, what do I do? Not having health insurance is scary and having it can be really expensive if I am not a full-time student (also expensive).

so to sum up this post: more cancer=scary, no health insurance =scary, no health insurance+more cancer= i dont even want to go there

I feel like I have lived a lot and met so many different kinds of people, and quite a few amazing ones. I have experienced many different things in life, both good and bad and everything in between. I have dealt with death, life, love and loss. I wonder what the future holds. I know I will continue to meet people and learn, but after 21 years of living, what could possibly be next for me? Its so many years, yet so few. I feel like I could write a pretty interesting autobiography at this point. Im scared and excited for the future and I dont know how long the future will be. But Im interested in this next chapter of my life, the one where "real life" begins.

Except, after cancer (and everything else) what does real life really mean?

There are so many things I want to do after I graduate and I dont know which one I will end up doing. Im trying to keep an open mind. Whenever you try to make plans, life has a way of messing up. I do know that whatever I do, I want to play outside on a daily basis. I want to move to colorado. i want to practice yoga all the time and possibly become an instructor. scratch that i want to be a yoga instructor. want to live in a spanish speaking country and become fluent, possibly teach english and whitewater kayak while I do that. I dont think I will return to granada. I want to go to italy. I want to live in italy.

i dont want to go to grad school. at first it was because I wanted to pursue a PhD in linguistics, which would take awhile and I need a break from school. Now, after almost a year away from linguistics, I dont know that I am even interested in it anymore. But I remember loving it. I guess deep down Im expecting to get sick again. I try to live in such a way that if i do get sick tomorrow, and its bad, i will be satisfied with the life I lived. I dont mean in a reckless way, i guess i mean that i try to live every day as if it were my last while being immensely satisfied in whatever I do. I wish that more people could live like this, but I dont think its a way of life come upon very easily.

I wanted to get a PhD so I could become a professor and have great health insurance and be able to teach and do my own research. I dont know that I want that anymore. And alot of the plans I have do not include having health insurance. I cant think about that right now. too scary.

Its really hard for me to imagine living to be old. I guess I just dont want to get my hopes up just to be disappointed. No Im not depressed or being negative, I think that I have just accepted death as apart of life, and somehow, that makes me more free, more patient and more satisfied. and it also kinda makes me feel like I need to do everything, at the same time, like a subtle urgency. not so subtle at times. i do not do not do not want to live like that.

maybe i cant picture myself old because its soooo far in the future? and it doesnt have anything to do with health insurance?

I used to feel like the oldest person in the world. not anymore so much, but why do I sometimes feel like I have more in common with people 10 years older than me than people my own age?

oh god i want to go back to italy.

ps im listening to samson (sp?) by regina spektor on repeat because it is such an awesome song.

by Sallie Tisdale

This woman wrote an article for Harper's Magazine that is really long and really good. She worked as an oncology nurse and then got diagnosed with breast cancer. These are my favorite parts:


"Cancer" is a catchword for a group of diseases defined by the cell in which they originate. Different cancers have different courses, prognoses, and treatments; they are different diseases. Some are fast and some are slow, some are relatively easy to treat and others almost impossible. They all involve abnormal cells without a useful function, cells that are not orderly and are not controlled by the normal mechanisms that manage cell growth. Tumors can double in size in two to three months. By the time of diagnosis, many have metastasized to new sites. The cancer is loose, it has broken free, and the second-generation tumors are often genetically evolved, with new properties. With each move, the cells become more primitive, evolving into a kind of ur-cell. There are cancers called "unknown primary"--the cells are so plain their origin can't be identified. These are cells as psychopaths: twisted, clever, self-destructive, taking victims down along the way.

The number of cells involved is difficult to grasp. By the time cancer is detected, many millions of abnormal cells are present, and they are usually dividing rapidly. Treatment is a matter of killing as many of these abnormal cells as possible, as fast as possible, without killing the patient in the bargain. Most oncologists are reluctant to use the word "cure," and tend to speak of cancer as a chronic disease. The goal of treatment is remission, a state in which the cancer can't be detected. Remission doesn't mean there is no cancer in the body. Animal studies suggest that millions of cancer cells remain hidden in the person considered "cancer free."

The immune surveillance theory of cancer holds that in a way we all do have cancer, that a healthy immune system fights off rogue cells as they appear. (New research indicates that cancer in turn can shut off crucial parts of the immune system, actively dismantling what might attack it.) A person's immune system may be able to eliminate those remaining cells one by one, the way one fights a cold, and the remission will be durable. As with other chronic diseases, in theory cancer patients could simply continue to take anticancer drugs their entire lives--if the drugs were not so toxic.

...

Christa, a forty-four-year-old woman now in remission, told me that when she was first diagnosed with lymphoma, everything happened terribly fast. "I was carried along in this urgent wave," she said. "People kept talking about getting second opinions, but it was so urgent I was just swept along." People with cancer are overwhelmed first by fear, then by information, then by noise and change, and finally by continual tiny losses that etch away at their sense of self like water on a stone. Modesty is one of the first things to go, and privacy hardly exists. People sometimes are admitted to the unit directly from the doctor's office, having just heard the news. There's no time to pack a bag; they are literally stripped before the day is done. I remember a man who buried his wife on December 22, and on Christmas Eve was admitted to 5-K, having been diagnosed with leukemia that morning. He sat up in bed with an unfocused, sagging shock in his face, barely answering my questions. He was facing a brand-new life, which had arrived without warning.

...

Just that word, "chemo": an insider's word, diminutive, familiar. "Chemotherapy" actually means "any treatment with medicine," but in modern parlance it means only one thing--the cytotoxic drugs. And what a word--the root, chem, has the same Greek source as the word "alchemy": the search for a means of prolonging life, a universal cure for disease. The search for transmutation. My friend Sylvia, who survived Hodgkin's disease, said of her chemotherapy, "It's like going to a foreign country you've heard a lot of bad things about and never wanted to visit. And then you have to go there." After Sylvia said that, I began to call it Chemo World.

"Cytotoxic" means "cell-killing"; these drugs destroy fast-growing cells of all types. They are still the cornerstone of cancer treatment, used before, during, and after surgery, radiation, and other treatments. There are many dozens of cytotoxic drugs of several classes on the market, and more are being released all the time. To kill fast-growing cells in a living body in order to return it to health is a little like using buckshot to kill a cockroach on the picture window. Cytotoxic drugs can be teratogenic (causing fetal malformations), mutagenic (causing genetic mutations), and, yes, carcinogenic. They also sometimes kill cancer, so most of us view them with trepidation and hungry hope. Jeffrey Menashe imagines a day in his lifetime when we are done with cytotoxic drugs. He says, "The whole discipline of oncology was built up around the fact that you have a class of drugs that is so toxic you need a discipline to manage it, which isn't tree of any other kind of drug."

Most cells of the body multiply by division; they are magnificent duplicating machines. When more cells of a certain kind are needed, some of that type create enough material, genetic and otherwise, for two cells, and then they divide--that simple, that miraculous. One of the hallmarks of cancer is that the cells continue dividing without cease, without regard to physical space, available nutrition, or any of the other controls that limit normal cell growth. They just keep multiplying--growing and dividing and growing again.

Cytotoxic drugs are classed by how they affect cells. Certain drugs are "cell-cycle specific," meaning they only kill cells at a specific phase in their growth cycle; others are nonspecific. One type of drug inhibits DNA repair and synthesis; another interrupts cell metabolism in a specific phase; yet another breaks the DNA helix strand in any phase. Some drugs are thought to kill in proportion to the dose--the more drug administered, the more cells are killed--and have a "kill rate" for just what proportion of cells they destroy.

Cell biologists and cancer researchers may spend an entire career focusing on a particular gene expressed at a particular phase in the cycle of a particular kind of cell. They study things like the tumor-suppressor gene Smad4/ DPC4 and how gelatinase B affects the growth of tumors' circulatory systems, and they study them for years, from every angle. But for all the time, money, and words spent on cancer, many of the basic questions are largely unanswered. Walter Urba, director of the Robert W. Franz Cancer Research Center, says, "We don't really know how all these drugs work. We think we know."

Tumors are heterogeneous, made up of cancer cells dividing and behaving in different ways. For unknown reasons, cancer also tends to become resistant to the killing action of a given drug. To combat tolerance and attack these differently behaving cells, most chemotherapy is given in combinations. Combinations also allow a higher kill rate without overwhelming side effects. Few drugs are used alone, and most are used for several diseases.

Many combinations exist in standard practice. My handy laminated booklet from Pharmacy Practice News lists four different regimens for Hodgkin's disease, fifteen for non-Hodgkin's lymphoma, and thirty-two for breast cancer. Well and good--except that with thirty-two regimens in use, which one would be right for me? This is where it gets tricky. The order in which the drugs are given, the rate at which they are given, and the amount of time between drugs are partly a matter of opinion. Any known genetic markers of the cancer and current research matter. But so do factors that can only be called political in nature: where and when a physician trained, the proximity of a teaching hospital, and insurance compensation can all affect the choice of a regimen.

One of the reasons for choosing a specific regimen over another is the patient, not the cancer. The therapeutic index of a drug is the difference between the dose required to have a therapeutic effect and the dose that causes harm. Cytotoxic drugs have one of the lowest therapeutic indices found; there is often a very fine distinction between getting results and causing harm. In fact, taking patients as close as possible to the edge of tolerance often seems to increase survival rates, though some drugs have lifetime cumulative dose limits. A person with heart disease will not be able to tolerate the same doses and drugs as a person with a healthy heart. Moreover, the drugs are given to patients with stressed kidneys and livers, who may be recovering from surgery, who are taking many other strong drugs, who are malnourished, who are still suffering the lingering effects of prior chemotherapy and radiation. (They are given, after all, to people with cancer.) No one can predict how a patient will respond to any given drug; it may be genetically determined.

...

Woven through all this is what we call fatigue. Cancer causes fatigue, and so do radiation and hospitalization and surgery, and so does chemotherapy. It is not a matter of being tired or depressed but something much more mysterious. Fatigue means a loss of vital energy, what some might call life energy, animation, reserve, or power. If you are tired, you can still run up a flight of stairs in an emergency. If you are fatigued, you may not be able to do that. Wanting has nothing to do with it. Just when you need a little extra, there is that much less.

I wonder sometimes whether this is one way the spiritual distress of cancer manifests in the body. We talk about contributing factors like anemia and malnutrition; we counsel light exercise and careful planning. But what about the loss of one's identity? What makes the self a self? With cancer and its treatments, the aspects of identity erode like sand in a tide, inexorably, constantly. You are a person who does things (work, family, hobby, art, sports), a person who fills roles (plumber, father, singer, tennis player), a person with an interior life unlike any other, and it all disappears. Who are you without these things? Who is the person who can't read a book or tie her shoes, can't make love, cook supper, or follow a conversation--who may never do such things the same way again?

Of all the effects of chemotherapy, that pesky therapeutic index is what keeps the nurses vigilant. When people die "of cancer," it is often not the tumor that kills them. Cytotoxic drugs can cause severe allergic reactions. They can damage every organ, including the eyes and ears and brain. They can decrease the contractility of heart muscle, make the lung tissue fibrous, erode the bladder wall so that it hemorrhages. They can, they have to, take people out along an edge no one really wants to walk.

Most cytotoxic drugs damage the immune system to some degree by damaging the bone marrow. This is called myelosuppression; it follows the active weakening of the immune system done by many cancers and can be lethal. A myelosuppressed person has too few specialized cells to fight infections, too few red blood cells to carry oxygen, and not enough platelets for clotting. Many people need blood and platelet transfusions. Sometimes, at a certain point in the collapse of the marrow, the chemotherapy simply has to stop until the person recovers.

Infection is the most worrisome problem. The nadir for blood cells can begin a few days after treatment or weeks after treatment, and last a long time. People in severe myelosuppression can die from the normal bacteria on their own skin and in their gut, from a fungal spore on their pillow, a bit of mold from a vase of flowers, from a kiss. Suddenly outside the pale of ordinary life, they die of themselves, and the world. To protect themselves, people bathe every day, wash their hands constantly, wear surgical masks, avoid fresh produce and flowers and pets and children and crowds. To avoid bleeding, they don't use razors, dental floss, or tampons, or walk barefoot or have sex.

...

There is a side effect little discussed by physicians and nurses, though it is a topic of much conversation among patients. "For me it started with words," Lee says. "I couldn't find the word, and I'd have to describe something. I couldn't work out if I was confused. I had to write notes a lot more. I'd forget things."

Patients call it "chemo brain." It was dismissed for a long time by doctors as a symptom of stress, but oncologists now accept that cognitive dysfunction after chemotherapy is rather common and surprisingly durable. So little is clear in Chemo World. In unusual, complicated, and not well understood ways, chemotherapy affects the brain. It causes not only changes in function--electrical activity, chemistry--but sometimes in structure, reducing the amount of white and gray matter. The effects are usually subtle; people complain of difficulty finding words, remembering what they've read. Many find it hard to do more than one thing at a time and frequently complain that they have a harder time doing arithmetic. Studies only now being done make it clear that the effects can last at least ten years after treatment and perhaps for good.

At what point are you no longer yourself? What is worth dying for? "Chemo brain is scary," says Lee now. "You think to yourself, 'What if it doesn't go away? What if I'm going to stay this way?' We've had patients that we've taken so far out, and it seems like they didn't come all the way back. It scared the hell out of me. I'm still a little scared."

...

I don't like to hear cancer patients described as brave. Their virtue is going on, without much choice. How can we speak of degrees of courage here ? To be sick this way is to have a kind of existential wound. One's life is taken apart like a motor, screws and facings laid along the table until it is just parts and nothing is left whole. I know I'm not brave, not the way that word is meant--stiff upper lip and all. When it is my turn, if it is my turn--I shake to think of it. I am surprised sometimes to hear the small murmur in the back of my mind, coming without warning. I am helping a trembling man my own age onto a commode, smelling his stale breath, and I think, I'm glad it's not me. The thought shames me, but there it is. Being brave is simply a matter of going on, because what else is there to do but this difficult thing--wait for me to come down the hall in my blue gown and gloves, and hang up a bottle of poison?

I am reminded once again of how crazy the world is and how out of control we are. I urge anyone and everyone who reads this to remember that your life can be taken away from you like that. Or the lives of your loved ones. Please let them know how much you love and care about them because whether its cancer or a shooting, it happens fast and theres no turning back the clock.

Also its free cone day at ben and jerry´s around the world. go get yourself a scoop.

I have a friend from one of the camps that i went to that has recently entered a hospice. She has a caringbridge website that she updates whenever she can and i check it every so often. Every time i check it i hold my breath and hope that i don´t see a death notice on her website. But now she is in a hospice. She recently went to the dentist and they didn´t want to make a 6 month checkup appointment. I should be in class now but instead i went to my program directors office and just started crying. Its like (my old friend) gina is dying all over again. And it sucks. it really really sucks. i wish i could cure cancer and make sure no one died and i know how i sound like some dumb 5 year old and i know i can´t. so im skipping class right now.

its good that things like this happen because it grounds me. every so often i forget that my health is a gift and that it could all be taken away at any time. its important to realize that i think. im trying to be positive and not snowball this whole thing into something worse and its hard but i think im getting better at bad news. and shes not dead yet. i wanna tell her how much she means to me while shes still alive so this is good. i still have time.

I was planning on going to italy with my friend during this long weekend we have (fri apr 27-tue may 1) instead of going on this program trip, so we didn't sign up for that program trip. Im looking at fares and theres a sweet ryanair one but it leaves on thurs, so she would have to miss class, and i guess she has already missed a bunch or is planning on missing a bunch bc of travel so she doesn't want to do that. But every other fare i can find leaving on fri the 27 is like double-triple that much, and i just can't afford that.

So here's my question: Do I say fuck it and go to italy for 5 days alone?

or

Do I say fuck it and try to figure out a different vacation with my friend?

I know traveling alone is dangerous, especially since i don't speak a word of italian AND i'm a super sexy american, but it also sounds fun. And I know I would meet people in hostels. Also, alone time is cool, right? Thats a lot of alone time though. Why is going to italy so hard?