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ends & oddhealth & medical

There has to be a better way

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Catching up. I’ve fallen behind on my information dissemination. I don’t like to post that I have questions but not answers. I don’t like to call friends and say that I have taken tests without being able to give them results. I’m trying to keep up, though, and there are still some missing results.

When I had that infection and the doctor freaked out and biopsied my lymph node, I literally had three thoughts about it at once. My first thought was that my lymph nodes have felt electric (best way I can describe) for quite a while, so the cancer was probably there already. My second thought was that the node was just swollen because of the infection and this was just an overreaction biopsy that would prove everything is fine. My third thought was that the infection had somehow shoved the cancer up in that node like a bulldozer, but maybe it would ease back down when the infection was gone. All these opposing views are just constantly bouncing around in my head about everything that is going on with me. If you imagined that I overthought things before, well, old me’s got nothin’ on cancer me.

I went on with my life, as I do. I took my antibiotics, started feeling better, met with the plastic surgeon at Moffitt, left feeling confident that he could build me a bionic boob with my (just so tiny) leftover baby belly fat (for the record, he called me skinny), and went home to wait for the scheduler to call. That was on Wednesday the 15th. On Thursday the 16th I felt well for the first time in a week, like truly up an at ’em well. I felt like I had the first part of a plan and it was kind of coming together. (The missing piece was/is still finding a more integrative oncologist who will work with me on alternative or natural therapies in place of or in conjunction with the most targeting chemo for my type of cancer.) I’m not a “let’s throw all the poisons into my system and hope for the best” kind of girl. On Friday the 17th I started to feel like I had caught the house cold (care of daughter and husband), and that night I got a call from the doc that my lymph node came back positive for cancer. He said his team would call me on Monday to schedule a PET scan, and we would go from there. He mentioned starting chemo and postponing surgery. On Monday I called Moffitt and the nurse also said this would postpone surgery. She scheduled me an appointment with their oncologist on March 7th. The freaking wheels at Moffitt turn ever so slooooowly.

Well, the PET scan machine at the radiology lab broke down. I have been so sick this last week and a half. It was like I had the cold that froze time, because I can’t seem to get things going. I have now been scheduled for a scan with that radiologist every day for a week. Every day they call and reschedule for the next day. Yesterday was the last time they did that. Today the folks at CTCA said that when they called to inquire about the results of my PET scan, this broken down place actually told them that I canceled my appointment there myself. I’ve given up on them entirely. Moving on.

As I write this now I am in a lobby called the Peach Outpatient Center at Cancer Treatment Centers of America. It’s in Newnan, Ga. (Big sign in town reads: “Newnan, Ga, City of Homes.” No homes anywhere else, ya’ll! We’ve got all the homes!) I’m about forty-five minutes SW of Atlanta for a third opinion and to see what the oncologists here are like.  I thought it was closer to Atlanta, so that’s a bummer. You have probably seen the commercials for this place. It is definitely a for profit company, but they sell themselves as the more integrative and natural place to cure your cancer. I will be judging them on that, for sure. It’s the whole reason that I came all this way.

First impression is that everyone here is going out of their way to prove to me that they are nice. They keep telling me that I have made the right choice by coming here. People at Moffitt are nice too. My first doctor in St. Pete was also super nice. It’s not like I’m shopping around for the nicest people to treat me. If you are a total bitch with with least invasive, most effective, not so poisonous cancer treatment, one that you know will work on my cancer because you have done the genome test, then you’re my bitch. It is a little sad here, as it is at Moffitt. Big buildings full of sick people are sad, it doesn’t matter how good the buildings smell, or how nice the garden is. Luckily, a very good friend is getting on a plane right now to hang out with me here for three days. Leave it to us to figure out how to turn this into a slumber party. Love that woman.

I know that people are wondering why I haven’t started any surgery yet, or started some kind of chemo yet. I’m not doing nothing. I’m getting healthy in every other possible way. I’m studying my butt off (wishing I’d had an interest in this before, because I’ve learned so much). I’m approaching this in the most thoughtful and measured way possible. I want to live. I mean really live, like get past this and be healthier than before. It might feel to others like I’m dragging my feet or not moving fast enough, but I’m getting it done, I swear.

 

 

Bob Sullivan's top ten everythingmovies

Top ten things overheard at last night’s Academy Awards

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10. “I understand that the Oscar was actually named after a guy named ‘Oscar’.”

9. “The montage of dead actors at the Golden Globes is a good indication of who’ll still be dead tonight.”

8. “I hear new U.S. Attorney General Jefferson Beauregard Sessions III is hoping that Ruth Negga wins for Loving just so he can say, ‘Well, mercy me! I do declare, a Negga just won Best Actress!’ and not get in trouble for it.”

7. “I’d like to thank the Academy. And for those of you who think it’s an honor just to be nominated: What a bunch of losers!!”

6. “I was considered ‘ineligible for a 2016 Academy Award,’ I think probably because I didn’t actually do anything this year.”

5. “I love that new ‘anatomically correct’ Oscar; it’s so much easier to carry!.”

4. “I’m so glad the Academy has finally recognized O.J. Simpson. They totally overlooked him for those Naked Gun movies.”

3. “I only hope I live long enough to be included in that In Memoriam segment.”

2. “I thought La La Land was about a Magical Kingdom ruled over by that yellow Teletubby with the curly antenna!”

1. “When I was backstage, I accidentally knocked over a couple of envelopes, but I can’t see how that can be a problem. I mean, they’ve only got one award left to present.”
 

Bob Sullivan’s Top Ten Everything appears every Monday.

virtual children by Scott Warnock

They don’t need us anymore

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Julianne and I took a trip to Bogotá, Colombia last week. I attended WRAB IV, an international writing research conference, and we stayed at the remarkable Bogotá Bed and Breakfast while being introduced to the wonderful city of Bogotá. In planning this journey, there was a little catch: What we do with our three kids – more specifically, what to do with three teenagers, since, when we returned, all three would be teenagers? [Read more →]

animalsBob Sullivan's top ten everything

Now that they’re making a wine for cats, top ten brand names

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10. Catbernet Sauvignon

9. Wine Lives

8. Yellow (Cat)tail

7. Furgandy

6. Clawvignon Blanc

5. Cat Nips

4. Pinot Meow

3. Mos-cat-o

2. A-purry-tif

1. FeWine
 

Bob Sullivan’s Top Ten Everything appears every Monday.

ends & oddhealth & medical

So that happened

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Last Wednesday was super stressful. Thursday was terrible and weird. Friday was worse than both. Today is almost normal, so I’ll write about it now. We’re all fortunate I was in too much pain to type on Friday.

I’ve been reading a lot about the mind body connection with breast cancer. I’m a believer. When I find myself getting anxious or stressed out I can feel the blood flowing to the tumor. I’m trying really hard to be mindful of what I am doing to myself physically when I go down my emotional rabbit hole(s). On Wednesday morning I was feeling great, then early in the afternoon I started to stress about something. It was a small thing, but then I picked up kids and they were both at their most intense. This got me really started up. By the time I was trying to handle the stress that showed up in the evening, well, let’s say all my coping strategies were used up. I felt blood rushing to my chest like a tidal wave. Then I started to feel pain. I tried to breathe my way out of it, but felt totally stuck.

Thursday morning I had a (previously scheduled) acupuncture appointment first thing. I thought for sure this would fix me. It did help, but by this time the pain was pretty intense. It was a chilly morning, so I didn’t notice that I just couldn’t get warm. I went home and took a nap. When I woke up, James was home for lunch and I had a fever of 101. Plus pain that felt like the worst mastitis ever possible (if you have not breast fed or have no boobs just take my word for it, this freaking hurts). I texted my go to TCM practitioner at TYM because I had just seen her for the acupuncture. She said she thought that, given the fever, it was an infection (why didn’t that occur to me?) and that if I didn’t want antibiotics she could treat me with herbs, but maybe I should call my boob doctor. I did call, and they put me on the books for 8:30 the next morning.

Friday morning at the doctor was not as I expected it would be. After the idea of infection was been brought up I had thought, “duh.” I figured I’d see the doc, get antibiotics for the week, and go back to my TCM for some probiotics next week (I would also like to say here that I avoid antibiotics like the plague and only use them for true infections. Because I would like them to be of some use to my children. You know, in future land.)

The doc and I chatted, I made boob jokes and she laughed. Then she took a look at the problem. Her whole demeanor changed. She started the ultrasound machine up. She took out her little tape measure. She used the word necrosis. She said she felt that the tumor was spreading (she may have said infiltrating, the oncologist uses this term), that one of my lymph nodes had also blown up, that she was going to do a biopsy right now. She said that I needed to stop thinking about what my plastic surgery options were because this was an emergency. She said I needed to start chemo immediately and have surgery sooner than planned and no reconstruction because there would be lots of radiation. I shook uncontrollably the entire time that she did the biopsy of my lymph node. I cried my eyes out.

In my car, after it was over, I called my husband and my mom. I told them both that I potentially had a very different diagnosis now, and also an appointment on Monday with an Oncologist. Obviously, I spread my worry all around and freaked everyone out. Of course, they want to know, but still.

I texted my TCM and she called me back. We talked about what the doc had said about necrosis. I couldn’t remember if the doc was saying it was necrosis or could be necrosis. Also, there was the fact that I never had time to ask if I should take antibiotics, just to rule out infection. I promised I would call the doctor with my follow up questions. To her credit, the doc responded by calling in the prescription for me. To my TCM’s credit, she sent me a message that she felt sure this was an infection, and told me to send daily updates. That made a huge difference for me, mentally.

By Monday morning my fever was finally gone. The oncologist examined me and agreed that it looked like an infection (at this point it was much less red, painful, and swollen), then he cancelled the order for my chemo. He also went over test results for my concern over rib pain. Everything came back normal. I even convinced him to order a mammaprint for me from my initial biopsy sample. It should tell me with a good bit of accuracy what my chances are for recurrence, and whether chemo will be a good move for me at all, like ever.

When the appointment was over I went to the beach and sat in the sun for 40 minutes, just breathing. Obviously, I need more of this type of thing in my life. Probably some better coping mechanisms as well, while I’m at it.

Bob Sullivan's top ten everythingliving poetry

Top ten favorite lines for a Valentine’s Day poem

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10. A Valentine that finds us far apart.

9. Though distance can’t dilute your brilliant Light.

8. I Love you very much, with all my heart.

7. And soon we two will finally reunite.

6. And nevermore will I be far from you.

5. And pleasing you will be my only aim.

4. Then nevermore shall we be rent in two,

3. United in the all-consuming flame!

2. Our path was fated since before Creation:

1. A Love forged in a Twin Flame Conflagration!
 

Bob Sullivan’s Top Ten Everything appears every Monday.

Bob Sullivan's top ten everythingliving poetry

Top one reason today’s Top Ten will be delayed 24 hours

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1. Because it’s called “Top ten favorite lines for a Valentine’s Day poem” and tomorrow, somehow, just seems more appropriate.
 

Bob Sullivan’s Top Ten Everything appears every Monday.

Bob Sullivan's top ten everythingpolitics & government

Top ten Executive Orders Donald Trump plans to sign into law

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10. The Fat Ugly Face Law: Which bans Rosie O’Donnell from showing her fat ugly face, or any of her other fat ugly parts, in public.

9. The Long Wall Law: Which mandates the building of a wall between the U.S. and Mexico, up the East Coast, along the U.S.-Canadian border, and down the West Coast, to be built by whichever construction company covertly contributes the most money to Trump’s re-election campaign.

8. The P.G. Law: Which gives the Pussy-Grabber-in-Chief carte blanche.

7. The Don’t Ask Law: Which bans gays and lesbians from serving in the military, except maybe for the occasional USO show.

6. The Trickle-Down Law: Which reduces the taxes of corporations and one-percenters to zero, because we know they’re going to spend that extra money like crazy so everybody can get rich.

5. The No-Immigration Law: Which bans all further immigration, because isn’t the country already full enough?

4. The Peekaboo Law: Which will require a government-vetted male to stand outside every men’s room and a government-vetted female to stand outside every ladies’ room to check the genitalia of anyone wishing to use the facilities, with all unisex bathrooms banned outright.

3. Trumpcare: Obamacare’s replacement, which will save millions in federal dollars, and provide each family a DIY health kit containing, for example, a DVD interview with Russian surgeon Leonid Rogozov who, in 1961 Antarctica, was forced to remove his own appendix.

2. The Alternative Facts Law: Which mandates that every atlas and history book publisher must print a second version of each of their books, containing such alternative facts as the thrilling story of how the fearless Donald J. Trump single-handedly took out bin Laden.

1. The Wretched Movie Law: Which bans the showing, airing, or sale of the films A League of Their Own, Sleepless in Seattle, The Flintstones, Exit to Eden, Pitch Perfect 2, or any other movie featuring Rosie O’Donnell.
 

Bob Sullivan’s Top Ten Everything appears every Monday.

virtual children by Scott Warnock

Diversity [icon of American flag?]

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Many of you have no doubt heard about Drexel professor George Ciccariello-Maher‘s December tweet, “All I want for Christmas is white genocide.” Since then, I myself have received some hateful, threatening email, I guess because my address ends with drexel.edu. Groups sending such emails aren’t too selective. [Read more →]