Minus my thymus; au revoir Haiti
To recap: the thymus gland lies beneath the breastbone in the middle of one's chest. It is considered a lymph gland, not an endocrine one. Meaning, that, for a child and a teenager, this is the go-to spot for generating immune cells.
For the average adult, this gland is vestigial, about as useful as an appendix or tonsils. For me, however, the smoker's lung scan I had in Jan. 2007 -- which insurance/"medical benefits" didn't pay for -- gave a point of comparison with the CAT scan I had in September. Net result? Gland had doubled in size.
Getting to the CAT scan was easy: I went to Dr. Training Bra, aka Baby Doc, my 12-year-old insurance doctor ("in network") for a smoker's cough late last August. She took a chest X-ray and sent me for the CAT scan. And that was as far as she went.
Baby Doc, as you may have recently heard, since the Haiti I know and love was turned on its side last week, was a not-very-bright dictator who ruled that country during many of my years there. Like Training Bra, he was totally incompetent.
But Haiti was relatively calm, and open for business. Given the political structure, as long as you knew who to pay off, you were good to go. Since Baby Doc's forced (U.S. aided) departure in 1986, no one has known who is in charge for more than half a minute or so.
I'm afraid all the well-meaning aid in the world can't fix Haiti's problems. Rebuild? That would assume infrastructure that never existed in the first place.
Forget democracy: start with potable water, food, and shelter. I don't care who is running the show; I just care that the show runner is consistent. Although I'm hoping for a step up from Training Bra, whose consistent mien was inattentive, bordering on awful, and who demonstrated a less than active interest in me, the patient.
Kyona Beach, Haiti: the last place I saw my father alive, some 19 years and 14 days ago. Four days from now will mark 19 full years since my father died.
CAT scan results, September 8: lungs are clear, but thymus growth indicates I may have lymphoma. The word is on the table then, although no one allowed me to ask questions about it -- or, at least, no one would listen and answer me. What I picked up on is, the radiologists' report says, send her for a PET scan.
Thus Catch 22 begins: Insurance won't pay for PET scan unless I have a cancer diagnosis; PET scan is the test that shows the abnormal cell activity indicating cancer is present. Logic here? Not so much. And Training Bra did not, as I explicitly asked her to to, advocate for me to get the insurance company on board with the test.
So I exit the mismanaged nightmare system to return to The Good Doctor, the internist who won't take my insurance but who actually gives a shit about me and my health. TGD sends me to a pulmonologist.
Lung man compares the CAT scan film/disk with the previous smoker's scan. While he does think the gland has to be removed, lymphoma doesn't make it onto his list of concerns.
A few weeks later, I meet the surgeon. He's got the social skills of an 8th grade boy. I'm hoping that his handiwork is on a much higher level. His office, at least, gets the PET scan approved while I am waiting to schedule thymus removal surgery. Like the docs before him, he thinks this thymus thing will be nothing.
I wait seven weeks for the PET scan. December 2, Surgeon removes thymus -- not laparoscopically as advertised, but through a five-inch incision in the middle of my chest. It will be six to eight weeks before the bone knits back together. Meanwhile, I also have small slashes across the edge of one breast: the failed attempt at laparoscopy.
Surgeon thinks thymus will be nothing all the way until the pathology report comes back from the lab December 11. When I go for the post-op checkup, finally someone voices what amplifies the down-the-rabbit-hole feeling I've been experiencing for two-plus months.
Yes, it's lymphoma, Surgeon says, not in the least bit concerned as to what that will mean to me. Oh, and here's an oncologist in the next office. My work is done. Surgeon appears to have no emotion whatsoever about what the pathology tells us. He doesn't even say, I'm sorry.
Nor does he concede in the office that he thought the growth was benign, which is what he told my mom and one of The Three Sisters after finishing my surgery. Post-op, Surgeon doesn't seem the least bit empathic or sympathetic or to have any emotion whatsoever about what the pathology tells us. As my mom would say, "fuck him. Or rather, don't."
Surgeon has no answer for why the water in one of New York's better hospitals is not potable. Nor has he an answer for why the hospital was unable to supply one of my medications and I needed to bring it from home.
Nor does he check to see that the resident who let me go knew how to write a prescription: she wrote for ZERO pills. Were I not astute at proofreading, that would have been an ugly drugstore showdown.
Possibly the worse part of the do-it-yourself hospital experience was that if I hadn't learned to disconnect the monitor that measured the oxygen in my blood, I would have gotten even less sleep than I did. (The monitor, it seems, was not hooked up to the nursing station.)
In Haiti, I grew up brushing my teeth with an inch of bottled water in a glass. In what used to be called the Third World, that is par for the course. To find out that the hospital in upper Manhattan required the same course of action was a surprise. To me, if you can't drink the water, you damn well better have palm trees and a beach.
I return to TGD, diagnosis in hand. Within an hour she has found an oncologist who is well respected as a hematologist and he can see me the next day at 9:20 am. Not my time of day, she knows, but at this point, who cares.
Enter Dr. W., the recommended oncologist I like, in as much as I'm going to like one. I can't bear to go for another opinion; I have had doctors and tests filling my weeks since September.
So: I have non-Hodgkin's large diffuse B cell lymphoma. As cancers go, it is common as dirt, and it is one of the "good" cancers. Sure, like second place in the beauty contest in the yellow Community Chest cards.
What's good is, I'm at stage 2: very curable, with standard chemo protocol. I don't need the specialization of the cancer factory at Sloan Kettering. I can stay with Dr. W. and have my treatments in his office. I don't have to go to a hospital just to get the poisons that will save me "infused" into my body. Infused. One hell of a word choice, one of many in the new lexicon.
I feel like a Vietnamese town during the war: we must destroy the village in order to save it. Didn't make sense when I was 10; doesn't make any more sense now. But there's the metaphor and that is how it applies.
Thus far, I've had round one of chemo. So far, no major nausea or other side effects. However, the toxins have just started to work. I'm told by day 10 or 12, my hair will start to go. That hair I spent two years tending like the back 40.
Sure, it grows back: but still, the idea of lifting my hand to my head and hair just flying through my fingers is an experience I dread. And yes, I bought a wig -- from the store that refers to these items as "she" and "her."
Not having received the memo telling me that English has gendered nouns, I want to say, "IT. IT. IT. It is an object." But wigville is another stop I never anticipated. I am learning a new language every day, one that I hope you, any and all, will never need to learn.
It may help you to know that my mother, after hearing my diagnosis, brought over a box of chicken soup mix for me. She and kitchens are not on good terms, and the last time, probably the only time, she made chicken soup from scratch was the night my father had a fatal heart attack in 1991. Culinary expertise and my mom don't go hand in hand. For us, soup is black comedy, not cure-all.
Discussions in the chemo lounge are fragmented, scary: some tell their entire stories, from diagnosis into X number of rounds of treatment. Exact diagnoses are volunteered; it is rude to ask. Some in the room have no hair. Some may have wigs, though I am not yet expert at distinguishing them.
I know one thing: if you lose (not that misplaced is exactly the proper term here) your hair and get a wig, it must have bangs, because you no longer have a nature hairline. I have not had bangs since I was 6. Right now, I'm just hoping I won't look like a Hasidic woman who has shaved her hair for her husband.
My mom offered to shave her head in solidarity with me, and then to wear a wig. If she cannot go though treatments in my stead, she wants me to know how much she would if she could. I tear up every time I consider the offer, but I have pointed out, Mom, we're not those kind of Jews.
People say, at least you have your sense of humor. I wonder: without it, how would I survive? My illness is drenched in irony, and that is the costume in which I suspect I will navigate the next several months. It is the only one I know. Here's hoping it helps.
For the average adult, this gland is vestigial, about as useful as an appendix or tonsils. For me, however, the smoker's lung scan I had in Jan. 2007 -- which insurance/"medical benefits" didn't pay for -- gave a point of comparison with the CAT scan I had in September. Net result? Gland had doubled in size.
Getting to the CAT scan was easy: I went to Dr. Training Bra, aka Baby Doc, my 12-year-old insurance doctor ("in network") for a smoker's cough late last August. She took a chest X-ray and sent me for the CAT scan. And that was as far as she went.
Baby Doc, as you may have recently heard, since the Haiti I know and love was turned on its side last week, was a not-very-bright dictator who ruled that country during many of my years there. Like Training Bra, he was totally incompetent.
But Haiti was relatively calm, and open for business. Given the political structure, as long as you knew who to pay off, you were good to go. Since Baby Doc's forced (U.S. aided) departure in 1986, no one has known who is in charge for more than half a minute or so.
I'm afraid all the well-meaning aid in the world can't fix Haiti's problems. Rebuild? That would assume infrastructure that never existed in the first place.
Forget democracy: start with potable water, food, and shelter. I don't care who is running the show; I just care that the show runner is consistent. Although I'm hoping for a step up from Training Bra, whose consistent mien was inattentive, bordering on awful, and who demonstrated a less than active interest in me, the patient.
Kyona Beach, Haiti: the last place I saw my father alive, some 19 years and 14 days ago. Four days from now will mark 19 full years since my father died.
CAT scan results, September 8: lungs are clear, but thymus growth indicates I may have lymphoma. The word is on the table then, although no one allowed me to ask questions about it -- or, at least, no one would listen and answer me. What I picked up on is, the radiologists' report says, send her for a PET scan.
Thus Catch 22 begins: Insurance won't pay for PET scan unless I have a cancer diagnosis; PET scan is the test that shows the abnormal cell activity indicating cancer is present. Logic here? Not so much. And Training Bra did not, as I explicitly asked her to to, advocate for me to get the insurance company on board with the test.
So I exit the mismanaged nightmare system to return to The Good Doctor, the internist who won't take my insurance but who actually gives a shit about me and my health. TGD sends me to a pulmonologist.
Lung man compares the CAT scan film/disk with the previous smoker's scan. While he does think the gland has to be removed, lymphoma doesn't make it onto his list of concerns.
A few weeks later, I meet the surgeon. He's got the social skills of an 8th grade boy. I'm hoping that his handiwork is on a much higher level. His office, at least, gets the PET scan approved while I am waiting to schedule thymus removal surgery. Like the docs before him, he thinks this thymus thing will be nothing.
I wait seven weeks for the PET scan. December 2, Surgeon removes thymus -- not laparoscopically as advertised, but through a five-inch incision in the middle of my chest. It will be six to eight weeks before the bone knits back together. Meanwhile, I also have small slashes across the edge of one breast: the failed attempt at laparoscopy.
Surgeon thinks thymus will be nothing all the way until the pathology report comes back from the lab December 11. When I go for the post-op checkup, finally someone voices what amplifies the down-the-rabbit-hole feeling I've been experiencing for two-plus months.
Yes, it's lymphoma, Surgeon says, not in the least bit concerned as to what that will mean to me. Oh, and here's an oncologist in the next office. My work is done. Surgeon appears to have no emotion whatsoever about what the pathology tells us. He doesn't even say, I'm sorry.
Nor does he concede in the office that he thought the growth was benign, which is what he told my mom and one of The Three Sisters after finishing my surgery. Post-op, Surgeon doesn't seem the least bit empathic or sympathetic or to have any emotion whatsoever about what the pathology tells us. As my mom would say, "fuck him. Or rather, don't."
Surgeon has no answer for why the water in one of New York's better hospitals is not potable. Nor has he an answer for why the hospital was unable to supply one of my medications and I needed to bring it from home.
Nor does he check to see that the resident who let me go knew how to write a prescription: she wrote for ZERO pills. Were I not astute at proofreading, that would have been an ugly drugstore showdown.
Possibly the worse part of the do-it-yourself hospital experience was that if I hadn't learned to disconnect the monitor that measured the oxygen in my blood, I would have gotten even less sleep than I did. (The monitor, it seems, was not hooked up to the nursing station.)
In Haiti, I grew up brushing my teeth with an inch of bottled water in a glass. In what used to be called the Third World, that is par for the course. To find out that the hospital in upper Manhattan required the same course of action was a surprise. To me, if you can't drink the water, you damn well better have palm trees and a beach.
I return to TGD, diagnosis in hand. Within an hour she has found an oncologist who is well respected as a hematologist and he can see me the next day at 9:20 am. Not my time of day, she knows, but at this point, who cares.
Enter Dr. W., the recommended oncologist I like, in as much as I'm going to like one. I can't bear to go for another opinion; I have had doctors and tests filling my weeks since September.
So: I have non-Hodgkin's large diffuse B cell lymphoma. As cancers go, it is common as dirt, and it is one of the "good" cancers. Sure, like second place in the beauty contest in the yellow Community Chest cards.
What's good is, I'm at stage 2: very curable, with standard chemo protocol. I don't need the specialization of the cancer factory at Sloan Kettering. I can stay with Dr. W. and have my treatments in his office. I don't have to go to a hospital just to get the poisons that will save me "infused" into my body. Infused. One hell of a word choice, one of many in the new lexicon.
I feel like a Vietnamese town during the war: we must destroy the village in order to save it. Didn't make sense when I was 10; doesn't make any more sense now. But there's the metaphor and that is how it applies.
Thus far, I've had round one of chemo. So far, no major nausea or other side effects. However, the toxins have just started to work. I'm told by day 10 or 12, my hair will start to go. That hair I spent two years tending like the back 40.
Sure, it grows back: but still, the idea of lifting my hand to my head and hair just flying through my fingers is an experience I dread. And yes, I bought a wig -- from the store that refers to these items as "she" and "her."
Not having received the memo telling me that English has gendered nouns, I want to say, "IT. IT. IT. It is an object." But wigville is another stop I never anticipated. I am learning a new language every day, one that I hope you, any and all, will never need to learn.
It may help you to know that my mother, after hearing my diagnosis, brought over a box of chicken soup mix for me. She and kitchens are not on good terms, and the last time, probably the only time, she made chicken soup from scratch was the night my father had a fatal heart attack in 1991. Culinary expertise and my mom don't go hand in hand. For us, soup is black comedy, not cure-all.
Discussions in the chemo lounge are fragmented, scary: some tell their entire stories, from diagnosis into X number of rounds of treatment. Exact diagnoses are volunteered; it is rude to ask. Some in the room have no hair. Some may have wigs, though I am not yet expert at distinguishing them.
I know one thing: if you lose (not that misplaced is exactly the proper term here) your hair and get a wig, it must have bangs, because you no longer have a nature hairline. I have not had bangs since I was 6. Right now, I'm just hoping I won't look like a Hasidic woman who has shaved her hair for her husband.
My mom offered to shave her head in solidarity with me, and then to wear a wig. If she cannot go though treatments in my stead, she wants me to know how much she would if she could. I tear up every time I consider the offer, but I have pointed out, Mom, we're not those kind of Jews.
People say, at least you have your sense of humor. I wonder: without it, how would I survive? My illness is drenched in irony, and that is the costume in which I suspect I will navigate the next several months. It is the only one I know. Here's hoping it helps.
Labels: be properly scared, Daddy, Haiti, lymphoma, meds, mismanaged nightmare, Mom, the hair, The three sisters
posted by alice, uptown at 4:22 PM
3 Comments:
If you can still come up with zingers like "having the social skills of an 8th grade boy" you've got your brilliant sense of humor firmly in tact. Thinking of you!
Mom, who must navigate the medical care system daily reminds me often...arm yourself with knowledge, stay aware, ask questions and don't be satisfied with a shrug.
Peace.
Love your blog, Nancy. What a harrowing medical journey. I hope you're planning to compile these blog posts into a memoir. I see a best seller in your future!
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