Entries Tagged as 'ends & odd'

Bob Sullivan's top ten everythingends & odd

Top ten driving one-liners

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10. Regular naps prevent aging, especially if you take them while driving.

9. My car’s such a piece of crap that its resale value goes up or down, depending on how much gas is in it.

8. I consider the word ‘Dodge’ on the front of my truck to be fair warning to jaywalkers.

7. Have you ever noticed anybody driving slower than you is an idiot, and anybody driving faster than you is a maniac.

6. I just got into a car accident while reading a sign telling me to keep my eyes on the road.

5. My new house has a circular driveway, and I can’t get out.

4. Apparently, everyone in my town thinks the saying is, “Don’t think and drive.”

3. Honking endlessly isn’t going to make me drive any faster – stupid geese!

2. I just bought a crappy secondhand car and the only gear that works is ‘Reverse’ – but I’m happy, as long as it gets me from B to A.

1. If you try braking, it will give your driving a bit more 00mph!
 

Bob Sullivan’s Top Ten Everything appears every Monday.

ends & oddhealth & medical

Looking forward

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The last several weeks have been all about the anticipation of an end. An end to the chemo. An end to what we think of as the miserable part of the treatment of this disease. I mean, the whole thing is pretty miserable, but this part is literally poison. This part has been so hard on my kids. They feel it every day. They have begun to understand this pattern in our lives, the way the week begins with a pretty good Monday, then the infusion hits on Tuesday. Wednesday I have steroid energy (but also steroid crankiness) and then the rest of the week is a slow, agonizing climb back up to an almost normal mom on Monday again. My six year old daughter is terrible at knowing what day of the week it is and what day we have plans on, but she knows when it’s Tuesday and what that means in our house these last months. So, this countdown to next week’s final chemo treatment has been on the forefront of our minds. It comes up a lot. A lot a lot.

I’ve been seriously looking forward to the end of chemo. I’ve been beyond looking forward to building my poor body back up. Man, am I jiggly and soft. I try to go for walks when I can now, but it’s so damn difficult and exhausting. If I walk too long I blow my energy for the rest of the day. It’s like I have this finite amount every day and when it’s gone it is just gone. I wish I had a battery indicator light so I could know when I’m pushing it and could know to stop. That would be super helpful. I’ve been thinking about the joy of getting to Tuesday, November the 28th and not going to chemo. Tuesday mornings I feel decent, and I’m downright excited to have a Tuesday that doesn’t get ruined half way through with poison. I think I’ll go to the beach that day and fill myself with salt air instead.

I’m looking forward to having the energy to walk every day and work my way back up to doing yoga. I’m looking forward to going back to physical therapy for this damn arm that got ruined by the surgery. I’m looking forward to having the energy to do all the chopping and cooking that goes into a healthy plant based diet. I’m looking forward to not having to tell my kids that I can’t do whatever or I’m too tired for this or that. I’m just looking forward.

That’s what I’ve been thinking about the last few weeks. It felt like when you’re a kid growing up poor in the 70’s and it’s three weeks until Christmas, and you know your mom has been scrimping together money all year to make it beautiful and you know you’re going to get what you want from Santa, because even though you often don’t have enough food in the fridge you always know you can count on Christmas. Like that.

Then a few days ago I had a long phone consult with my naturopathic oncologist. He’s putting together two protocols for me. Well, actually, he already did, I just haven’t read them yet. One is for helping me clean up my body post chemo. One is for going forward in life and remaining cancer free in the future. (according to some charts I have about a 30% chance of recurrence, according to others as high as 50%). When I hung up from that call I wept. To be honest, I just barely kept it together through the call at all.

Because part of this is over, though there are still more surgeries to come, and part of it will never really end. I’ve had to make changes (that really, I should have made anyway, that make sense for all humans in this world) and I can’t go back to living the way I did before. I want to get back to normal. My family wants to get back to normal. Then there is this realization that there has to be a whole new normal. I can’t live my life in fear, but neither can I live my life in denial. That’s a hard reality to face when you’ve invested some serious time and thought in the idea that this is all about to be over.

Next week is my last taxol infusion. They have a big bell that you ring when you are done. There’s no school next week, so the whole family will be with me. My kids are pretty excited to ring that damn bell. Hopefully they don’t break it. That would be just like us, to over do it and crack the thing. Hopefully it feels like this is over for them, that the new normal just bleeds into their old normal and things get easier for them, lighter. This week has been all kinds of heavy, and maybe next week it doesn’t magically all go away, but at least I could (as my son would say) level up.

Thank you, cancer, I get it now. You can go away for good.

ends & odd

I’m walkin’, yes indeed …

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I’ve been walking, lately. And I’ve been walking a lot more, getting out past my usual routes of recliner-to-frig, and car-to-office. And the funny thing is, I’m LIKING it.
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Bob Sullivan's top ten everythingends & odd

Top ten excuses of a German man who had to be rescued by firefighters when he got his penis stuck in the hole of a 5½-pound dumbbell plate at the gym

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10. “I couldn’t afford a Fitbit and thought this would be the next best thing.”

9. “I’m a big fan of ‘pumping’ iron.”

8. “I thought it would be a good way to meet one of those hunky firefighters.”

7. “I made a miscalculation; the 6-pound dumbbell has a bigger hole.”

6. “It’s the male equivalent of Kegels.”

5. “It takes a dumbbell to fuck a dumbbell.”

4. “I’m very nearsighted, and I honestly thought it was a cat.”

3. “I misheard something about the gym being overcrowded, and then something about cramming in a member.”

2. “I was practicing my short-range ring toss.”

1. “Well it had a hole in it, didn’t it?!”
 

Bob Sullivan’s Top Ten Everything appears every Monday.

ends & oddtechnology

All a-twitter over Twitter

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I’m confronted with what one of my boys would call a “first world problem” …

Last week, Twitter launched an experiment, expanding the number of characters allowed on posts to 280 from the original limit of 140. The test, I read later, involves a small, random group of users (a single-digit percentage of the total users). It seems I’m one of the select few.

“We few, we happy few …”

Hmmmm, happy? Maybe not … at least, not in my case,. I rather liked the 140-character limit. It was a challenge to me. Could I communicate my thoughts successfully – and succinctly! – in my tweets? It required me to stretch my vocabulary, use punctuation more effectively, and move away from rambling rants and towards brief bullet-points.

Sort of a haiku for the new millenium.

I’ll be interested in learning the results of this experiment. For my part, I’ll be contributing to the 140-character end of the bell-shaped curve (or whatever) illustrating those results.

Just because I get twice as much space doesn’t mean I have to fill it. If I have more than can be said in 140 characters, I could always post something on “When Falls the Coliseum.”

 

Bob Sullivan's top ten everythingends & odd

Top ten one-liners 2: Electric Boogaloo

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10. Preventing childhood obesity is as easy as taking candy from a baby.

9. I don’t know why all the kids call me Quasimodo, but I have a hunch.

8. If I could have dinner with any person living or dead, I’d pick the living one.

7. I have kleptomania, but when it gets really bad, I take something for it.

6. I had to cancel my appointment with the impotency clinic, because something came up.

5. The police recovered my stolen sofa, which was really nice of them because it was looking a bit tatty.

4. Diarrhea must be hereditary, since it runs in your genes.

3. If you believe in telekinesis, raise my hand.

2. My granddad had the heart of a lion, and a lifetime ban from the Philadelphia Zoo.

1. My wife may nag me at times, but when she told me to stop impersonating a flamingo, I had to put my foot down!
 

Bob Sullivan’s Top Ten Everything appears every Monday.

ends & oddhealth & medical

Is it over now?

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Have you ever been on that stupid carnival ride that sends you up in the air, in a long row of seats, then bounces you violently back down to the ground? (It’s especially unpleasant for the boobed half of the population). I feel like I’ve been riding that thing for at least a week. I have felt so supported and loved by my family and friends, and so slammed and beaten by chemo. Up an down, again and again. Damn carnie won’t let me off! Lovely and miserable all at once.

The chemicals hit me hard this time. Day one seemed like it was going to be an easier ride, I got a gift from Miami and was smart enough to use it before I was on the floor and desperately needed it. I had some good prep, too, from some great alternative practitioners. Thank You, Mama!! Then day two I was in the depths, feeling underwater and seasick, far worse than the first go round. Right away my hair started to fall out, my mouth began to sting and burn, my heart took off racing like I’ve perpetually just finished running a mile, and everything I tried to eat tasted like a chemistry set. Fruit is the only food that still tastes like itself, even water was impossible until I added lemon. I was so tired, though, I didn’t care about food at all. I ate some plums, drank some juice, and slept.

Day three I shaved my head. I was just tired of the clumps falling out. What’s the big deal about losing your hair? It’s not just that, as a woman, I feel my hair contributes highly to my attractiveness and appeal. It’s not just that, as a redhead, I’m super attached to my identity as the fiery ginger. Those are some serious truths, but when you are diagnosed with cancer, losing your hair is like losing your ability to control your narrative. Was I open about my diagnosis? Maybe more than I should be. Now, though, I may as well be walking around with a scarlet C on my chest. I’ve been out in a beanie and out in a wig, it’s very clear what my deal is either way. I see the faces, and man people cannot hide their expressions. Their questions and their curiosity are written all over their faces. It’s like being the worst kind of famous. I’m Monica Lewinsky. I’m Tonya Harding. I’m the sad train wreck because I can’t alter the perspective of the crowd. I can’t look them in the eyes and say: “I’m fine, I’m going to be OK, this is temporary, don’t put your sad cancer juju on me!” I guess I could say it, but then I’m a train wreck for real, right? Fucking hair.

At the same time, right now, I can afford to pay for things by the miracle that is this go fund me campaign. The new mushroom supplements came in the mail. I was able to have a mid cycle acupuncture treatment today (seriously, the relief it brings is miraculous). I am calling a cleaning company tomorrow to make an appointment and get some help with this house. I have never been the girl who depends upon the kindness of strangers. I’ve been the girl who bristles at the mere mention of possibly needing any help at all. And then one day I just couldn’t keep it together and do it all. My husband says we’re like George Bailey at the end of It’s a Wonderful Life. The money is pouring out on the table in front of the Christmas tree, and we definitely feel the love.

The third treatment (of eight, fucking EIGHT) is next Tuesday. I’m meeting my new oncologist that morning. According to the nurses that I’ve had during my infusions, the AC chemo is hitting me too fast and hard. The second nurse said to ask for an adjustment of my dose, which I plan to do. I hope this oncologist doesn’t suck. I hope he listens. I hope he’s read my damn file before I get there. I need to get through this without completely falling apart. He better be ready to help. Unfortunately, I won’t have my red hair on display to excuse my ginger attitude for me. Hopefully he can handle it.

 

Bob Sullivan's top ten everythingends & odd

Top ten things you don’t want to hear at tomorrow’s Fourth of July barbecue

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10. “Hope everybody likes tofu burgers!”

9. “Is my hot dog supposed to have an engagement ring on it?”

8. “Tell Uncle Jerod’s that’s not a flask; it’s lighter fluid.”

7. “Okay, NOBODY LIGHT CIGARETTES OR FIREWORKS NEAR UNCLE JEROD!!!!

6. “Wish somebody had told me this BBQ was BYO!”

5. “Why do all these burgers have long, thin tails?”

4. “Who stuck Yank My Doodle! It’s A Dandy! into the VCR?”

3. “Is coleslaw supposed to move like that?”

2. “Who puts mayo on top of all the buns? Oh, wait…. Whose bright idea was it to put our picnic table directly under this tree?”

1. “Don’t worry about blowing your fingers off with those firecrackers; we’ve still have Ocamacare for at least another twelve hours!”
 

Bob Sullivan’s Top Ten Everything appears every Monday.

ends & oddhealth & medical

One down, seven to go

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The very first thing that crossed my mind when I got my diagnosis, I am not proud to say, was “shit, I’ve been growing my hair out forever.” That is the first thought that I think we all have when someone says the word chemo, the fact that a person’s hair falls out. Initially, I was hoping that I’d be one of those lucky women who could just have a lumpectomy and some radiation (maybe) and then move on. Then I hoped it would just be the mastectomy without chemo. Once I got used to the idea that the chemo was going to happen (my tumor was more aggressive than first suspected) I just wanted to be done with it already. That didn’t work because I started the revolving door of oncologists. I was informed on May 16th that I needed to start chemo, on June 27th I got my first treatment.

My new hope was that I’d be one of those bitches who says that chemo doesn’t really make them feel bad. Isn’t hope funny? I was told that it would take at least three days for the chemo to get in there and create the dreaded side effects. It took about four hours. I think. I actually have no idea what time it was when I started to vomit. I felt like I was made of granite. I was heavy, so heavy that I couldn’t move my arms and legs. When I was getting the infusion, I could feel it going into me. Especially the red devil, because they actually hand pump it into you with a giant syringe, like you’re a cartoon character getting a shot from a mad scientist. Lying on the floor hours later it felt like the red cement had finally hardened. I’m pretty sure that at some point I just texted my husband (only two rooms away) “help.” My thumbs weighed too much to say what I needed. I only vomited once. All that I will say about that is that a friend of my husband’s brought me something that helped.

Every day since has been a little different and a little better. On day two I barely moved or ate, and the bone marrow bomb on my hip went off, which was super weird. Apparently people weren’t showing up for their day after chemo appointments to get this shot that forces your white blood cell count up. I don’t blame them. The solution was to stick the shot onto the patient with adhesive, and set it like a time bomb to shoot the meds into them at precisely twenty seven hours past infusion. I could feel it pumping into my abdomen. Super freaky, not in the Rick James way. Last night, night four, I slept without taking anything for the nausea. Today is Saturday, and not only have I not spent the entire day sleeping and spitting (I feel like I need to spit a lot, and I’ve never felt the need to spit previously, like ever), but I also walked a few laps around our pool. I’m sure that sounds weird, but I didn’t want to get a block from home and then realize that I had to just sit down and text someone to come carry me back.

I have big plans for the upcoming week. I will spend the holiday feeling grateful that my extended family will make sure my kids have fun (as they are doing today). Then I intend to feel well enough by Wednesday to go wig shopping, and on Friday I hope to make it to physical therapy. Woot woot. Until then I am thanking my lucky stars that my kids know how to cheer me up, my husband feeds me when I can stand it, and I have Netflix, Hulu and HBOGO when nobody is home.

ends & oddhealth & medical

Three weeks out

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Three weeks ago today my right breast and 25 of my lymph nodes were removed. Man, did it hurt. It’s getting easier, as far as the pain goes. The strangest part, physically, is that when it doesn’t hurt there is an emptiness. Having air where there used to be this part of me is a strange and sad adjustment to make. It feels ghostly, is that a word? The strangest part, emotionally, is coming to terms with that surgery being just the start.

People talk a lot about fighting. All these war references seem misplaced after a bit. You see it especially with breast cancer. We are all referred to as “warriors” pretty regularly, and we are doing battle with boobs. They make tee shirts that say: “Yes, these are fake. My real ones tried to kill me.” Some women begin to resent and hate their breasts and their bodies when they get breast cancer. I can’t relate.

I have certainly had a love/hate relationship with my body (when I was skinny I wished for curves and then when I wasn’t skinny I wasn’t happy with that either. It wasn’t until my late thirties that I realized I usually looked pretty great and needed to stop caring). It took having cancer to make me feel genuine love for my body. I didn’t get mad at my body. I didn’t feel like an angry warrior. I felt sorry. I have apologized to my self so many times since my diagnosis. I’m so sorry that I didn’t do better and know better. I’m most sorry that I didn’t love my body. I didn’t appreciate it, I insulted it, I didn’t take care of it. I’m not angry with it now. I love it now. I see it now as such a gift. Every day in this body is a gift. Some crap life lesson that we all know is true and never spend two seconds to think about until we are knee deep in the quicksand.

Apologies aren’t getting me anywhere with this body of mine, though. Not so far. And there are so many miles left to go before I rest easy. I’m maybe 20-25% there. I just did this hard thing, and all of these people showed up and fed us and cared and asked and helped. I was so grateful, and then at the same time I wanted them to stop. I wanted to remind everyone that they should maybe come next time instead, when maybe it will be worse. There is so much more to come. I now have two kinds of cancer. About 3% of women get thyroid cancer after they get breast cancer. Most of those 3% get it way after, but I couldn’t wait. I’ve never had any patience. So, this thyroid will probably be removed as well. Those appointments start soon. They want to focus on the breast first, and I have been doing the same (mentally, I mean). I am up to like 6 or 7 doctors now (including naturopath types). Last week I had four appointments in three days and afterward I just crumbled. I had started to feel a little better physically, feel like I was accomplishing something by healing from surgery, and then I realized that my sprint turned into a marathon turned into a triathlon. Is there a kind of race that you run for life?

Life is now the strangest mix of desperately trying to let myself feel joy in every possible moment, being ever diligent about my food and supplements, my doctor’s appointments, treatments, meditation and exercise, and trying to provide my family with the care and love that they need and deserve. I just keep thinking that I want more more more. More of everything. More of this exact life. I don’t think anymore about what I might have done differently. I would take more of exactly this forever.

 

Bob Sullivan's top ten everythingends & odd

Top ten United Airline excuses

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10. “We had no idea he was a doctor, because he wasn’t wearing scrubs and a stethoscope.”

9. “Our slogan is ‘Fly the Friendly Skies,’ but we were still on the ground.”

8. “All publicity is good publicity, as long as they spell your name right – and that’s ‘Airlines, with an ‘s’.”

7. “Our in-flight entertainment system was on the fritz, and we wanted to provide our passengers something with a bit of drama to it.”

6. “Of course we think United employees should get preference; after all, they’re United employees!

5. “He refused to return his tray table to its full upright and locked position.”

4. “We had no idea other passengers would use their cell phones to take footage of the incident – that’s on them!

3. “We offered him accommodations in an overhead compartment, but he refused.”

2. “The day before I gave the order, I massively shorted United Airlines stock.”

1. “Why do I get the feeling any excuse I give just won’t fly?”
 

Bob Sullivan’s Top Ten Everything appears every Monday.

Bob Sullivan's top ten everythingends & odd

Top ten unanswered questions

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10. Where does it say Humpty Dumpty was an egg?

9. Do gun manuals have a “Trouble Shooting” section?

8. If a man is talking in the forest and there is no woman there to hear him, is he still wrong?

7. If someone with multiple personality disorder threatens to kill himself, is it considered a hostage situation?

6. Why does mineral water that has “trickled through mountains for centuries” go out of date next month?

5. If a firefighter’s business can go up in smoke, and a plumber’s business can go down the drain, can a hooker be laid off?

4. Doesn’t expecting the unexpected make the unexpected become the expected?

3. Why don’t autobiographies ever end with the author writing a book?

2. If an indoor shooting range is burning, what do you yell to raise the alarm?

1. On a scale of 6 to 2.3, how much do you hate not being confused?
 

Bob Sullivan’s Top Ten Everything appears every Monday.

Bob Sullivan's top ten everythingends & odd

Top ten pun-liners

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10. I bet the butcher fifty bucks he couldn’t reach the meat on the top shelf, but he said the steaks were too high.

9. When my wife kicked me out, I started living in a telephone booth, because I just wanted somewhere I could call home.

8. I made a chicken salad last night, but apparently they prefer to eat grain.

7. Standing in the park, I was wondering why a Frisbee looks larger and larger the closer it gets, and then it hit me!

6. I was hanging from the bridge when a rescue worker shouted, “Whatever you do, don’t look down!” – so I started smiling.

5. When people ask me why I wanted to be a film editor, I answer, “Well, to cut a long story short…”

4. I’ve just invented a working catapult, but it’s disguised as a sofa, so it tends to throw a lot of people.

3. While I was using the ATM, this little old gray-haired lady asked me if I’d help her check her balance, so I pushed her over.

2. I sent ten different puns into a local newspaper’s pun contest, hoping that one of them would win but, unfortunately, no pun in ten did.

1. Yesterday, on its last day, my best friend, who’s a dyslexic plumber, told me just how disappointed he was in this year’s Philadelphia Shower Flow.
 

Bob Sullivan’s Top Ten Everything appears every Monday.

ends & oddhealth & medical

It almost feels like a plan…

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So, where did we leave off? I think I was in Atlanta (sort of). Two good things came out of that trip to Atlanta. Well, one for sure good thing and one possible good thing. The absolutely good thing was that I got to spend three days with a great friend. We caught up on about 10 years worth of news. In the past ten years I think we had seen each other 5 or 6 times, tops. It was pretty great. I’m bad at letting people help me, but she was extraordinarily helpful. Everyone should have someone just like her to accompany them to important third opinions with doctors. Sometimes she heard them say things that I missed, sometimes she reassured me that I heard what I thought I heard, and she took amazing notes that I have already gone back to many times. Thanks JJW, you’re the best.

The other potentially good thing? A lead on a Naturopath MD Oncologist. We’ll see how that turns out in a couple of weeks. The doc is super far away, but does phone consults (for a bajillion dollars, of course). Hopefully it will be worth it.

Other than those two things, that cancer center was not what I hoped. They do have a great Naturopath MD on staff, I liked her a lot. The surgeon that I met with, however, was the least pleasant consultation that I have had yet. By far. Real far. The biggest red flag for me was that the schedulers set me up with an appointment to have a chemo port put in before I ever even met with a doctor. Um, hello, what? And they kept ordering tests for me. The trouble I had with that was that I just wanted to speak with the doctors first. Also, everything there was out of network for my insurance. It was not going to be cheap. Had I done everything they asked, I would have had a port, an EKG, a bone density scan and a CT scan. I’m sure that if I were headed there after having a really bad experience somewhere else, or feeling like I was ready to just jump into treatment, that would have been fine. That’s not where I was, though, mentally. So, the twenty people who worked there and told me that I had “made the right choice” by seeking treatment there, just sounded creepy to me.

Meanwhile, I started to feel not as great as I was feeling the last few months. I came home and started trying to catch up after being gone for four days, and I still haven’t caught up. How many days has it been now? Ha! I haven’t had any energy. It doesn’t help that I’m still coughing from that flu we had. I think the cough made me think I was just still getting over something. Then on this past Tuesday I had a PET scan (ordered by Moffitt oncologist who speaks very quickly but is still my favorite of the three that I auditioned). The good news is that I am not riddled with cancer or anything crazy like that. It is still contained in the one boob and one lymph node. The bad news is the scan showed that there is something wrong with my thyroid. (So, I’m anemic, and my thyroid is out of wack. If you see me at the kid’s school, sleeping on the sidewalk, maybe just scoot me into a spot where I won’t get stepped on.) Endocrinologist, here I come!

The other bad news (at least I’m taking it that way at this point) is that “standard of care” requires that 2/3 of my surrounding lymph nodes have to be removed. All because of that one lymph that went astray. It seems excessive to me, and there are clinical trials going on to determine if that is really necessary, but that doesn’t help me now. Add to that the fact that they won’t build my bionic boob yet because they want to make sure I don’t need radiation first, and I’m a little annoyed with the process at the moment.

I do like to bright side things, though, and I finally have a date for surgery. April 10th. Mark your calendars, cause’ we’re having a raging kegger on the 9th and I will be topless! Gotta get the most use out of these before one is gone! Obviously, all but the surgery date is a joke. As long as my thyroid isn’t holding anything up, that’s the day.

I keep moving the goal line of my expectations, but it hasn’t reached the edge of the cliff yet, so there’s that! Actually, I still feel pretty stinking positive, maybe more than I did a month ago, maybe more than I should. Ha!

Bob Sullivan's top ten everythingends & odd

Top ten riddles

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10. What has four legs and an arm?
A happy pit bull.

9. What are the three most terrifying words a woman can say?
“Notice anything different?”

8. How do you find Will Smith in the snow?
You look for fresh prints.

7. Why did the chicken commit suicide?
To get to the other side.

6. What does a man with two right feet wear to the beach?
Flop-flops.

5. Why can’t you hear a psychiatrist using the bathroom?
Because the ‘p’ is silent.

4. How does a pessimist count his blessings?
“Ten…Nine…Eight…Seven…Six…”

3. What is ET short for?
Because he’s got them tiny little legs.

2. What do the films Titanic and The Sixth Sense have in common?
“Icy dead people.”

1. Why does Donald Trump sleep with a tub of hummus?
Because there’s nothing he LOVES MORE than when he has a chickpea in his bed.
 

Bob Sullivan’s Top Ten Everything appears every Monday.

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.

 

 

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.

ends & oddhealth & medical

Some days

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On Thursday last week I got a second opinion. It was actually an identical opinion to the first one, so the only thing second about it was the order. I still have cancer (I wasn’t actually thinking that part would change). The tumor that is the nastiest is still oddly shaped, so taking even just that would mean losing the bottom 1/3, at least, of my right breast. The DCIS toward the center still makes surgeons want to take the whole breast. The tiny benign lumps toward the top still bring no one much joy or solace. Here we are.

I will say that I like this doctor very much. She strikes me as someone who has lived a life knowing that she is always the smartest person in the room. That’s my kind of doctor. Still, perhaps because she’s a woman, she did not dismiss any of my personal efforts at trying to get my health in order. She was not dismissive in any way. She answered all of my questions as though I was at least maybe the second or third smartest person in the room. I left feeling like she should be my surgeon person, which meant, of course, that there would be a wait to have her treat me. Dr. Smartest will not be free tomorrow.

I still felt okay. Actually, I felt a little lighter for the rest of the day. Maybe coming to terms with the very real likelihood that I will be under the knife soon, like it or not, settled something in my mind. I abandoned google and the Facebook cancer groups for two whole days. I spent a day playing activist with my daughter. I’d say, other than thinking about what to eat and drink and take, I barely thought of cancer for those two days.

Then Sunday I was trying to figure out how to get CBD oil (cannabis) and an MM card in Florida (I still don’t know), when I read a post by a woman dealing with bone mets in her ribs. She described the feeling in her ribs as an ache like a deep bruise. Ive been having intermittent pain in my ribs on the right, under the tumor site. At first, I thought I pulled something, but it didn’t really feel like a pull. I feel it more when I reach up high, it aches but doesn’t really pull like a muscle. On Thursday I didn’t bring it up with Dr. Smartest because I hadn’t felt it in days, makes sense that it would return on Saturday. So, now I have to call docs and see if anyone will do a CT scan or something for me.

Back to google we go. Back to the phone. I hate the phone.

Some days I’m just not laughing. I’m just not funny. I can’t go on and do the dishes and the laundry and make my smoothie and think about something else. Some days I’m just sad. Even though I’ve been told that my attitude is important here in Cancerville, some days are too hard. I can’t help but think about the worst possible outcomes. I can’t help but think every word I say to my kids this year should be carefully chosen. I can’t help but think I’m somehow wasting precious, precious time. It’s unreal and it’s painfully real at once. I don’t really know what to do with that today.

 

ends & oddhealth & medical

Everyone on TV is dying of cancer

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Seriously, every time I watch a show or listen to a podcast, someone is either dealing with the impending death themselves or had a parent who died of cancer when they were young. At some point I might have to just give up and do a media blackout. What I really need is a cancer rating website. The show/podcast/movie gets a C if it contains cancer death, an NC if there is no cancer reference, and a FY (fuck, yeah) if the storyline contains a person who beat cancer and then died of old age. That should be a thing.
While I’m at it, I would also like a restaurant that serves all the food that fights cancer, prepared deliciously. Everything will be organic. There will be no plastics in the room anywhere, not even in the seat under your bottom. No dairy, no meat, no sugar, no gluten. There will be wild caught salmon on Fridays only (moderation, people!) And maybe, on late Saturday nights, when there is a band (with no cancer songs- EVER) they will serve baked potatoes. This place will know how to make broccoli and brussels sprouts taste amazing (without a grill in site. Because carcinogens.Duh.) It will make the most wonderful dishes out of berries and also mushrooms, not together obvs. There will also be more than one organic tea option, maybe more than 20. The real kick, though, what will sell the place to all the cancer peeps and their friends, is the incredible fact that flax oil and turmeric is added to everything, BUT YOU WILL NEVER TASTE IT! I have to stop, I’m getting excited, and this place will not exist.
I need that restaurant. Feeding myself is a part time job. Trying to eat all organic and fresh takes time. So much chopping. So much shopping. Lucky for me I’m also doing intermittent fasting. That cuts out a meal in the middle, though crafting a healthy snack can sometimes be just as laborious. Can someone invent a self cleaning juicer? I’m asking for a lot today. Better start playing my cancer card.
My other part time job is studying cancer. Today I was trying to figure out the results of some follow up blood work (while I listened to a guy on Fresh Air talk about losing his mom to cancer). No more accepting the CBC form with the results and then throwing it away because I have no idea what it means. Now, I actually need to know what it means. Today it meant that my Vitamin D level is just barely in the normal range, so keep up the supplements. My iron indicators have gone up a bit, but not enough. Still anemic, wah wah. My B12 and folate are good, though, so it’s definitely the iron thing. What I don’t understand is why my platelet count went down to normal. Still looking into that. Hey- maybe the cancer is gone?! WEEEEEEE! No more blogs. The End.

ends & oddhealth & medical

First update

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So, it turns out that as far as cancer is concerned, I am not a mutant. No genes that make me necessarily predisposed to get this again. Though I will say that the genetic counselor made sure to let me know it is entirely possible that I am a cancer mutant, and that my particular mutation is as yet undiscovered. That’s a buzzkill, counselor! Apparently, if she were me, she would get a double mastectomy and have her ovaries removed as well. I will cling to as many of my lady bits as I can keep until they truly must go! That’s just how I intend to handle this.

In case you are wondering, I have drastically altered my diet and have begun taking supplements- some recommended by my probable soon to be surgeon, and some recommended by the lovely and talented TCM physician at Thank You Mama (to be fair, the surgeon is also lovely). I am also anemic and have to get that figured out and taken care of.

This morning’s appointment with the doctor was all about lumpectomy vs. mastectomy. No final final decision but I have to make it soon. Next up is to make an appointment to get blood work done- must check my iron again and look at my vitamin D levels with my GP. Then a consultation appointment must be made with a plastic surgeon. That is a sentence that I never thought I’d write! Then appointments for a second opinion, even though I do really like my probable lovely surgeon. I think it’s the right thing to do. This Friday I’ll be at Thank You Mama with my full test results to work up a complete game plan for the things that I can control (like what goes into my big ‘ol piehole).

I’m tired, but I’m trying to stay funny. Every once in a while I think about something that I need to teach the husband to do for the kids, just in case. You know, the mom things that I do. The stuff that just gets done and no one will notice until there is no one there to do it. And then I think: “Fuck it, just let him figure it out!” Ha! Just kidding. Then I push it out of my brain and try to go back to focusing on killing cancer, instead of focusing on the chance that it will kill me.

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