You Have To Have A Sense Of Humor To Read Your Own Medical Records.

So, I went in for X-Rays last week as part of a post-procedure checkup to see if the Lithotripsy did what it was supposed to do. — For those of you just tuning in, I’ve been dealing with an uncooperative right kidney for almost a decade. After three procedures, each with varying degrees of success, I underwent lithotripsy in order to remove the last of the debris that was floating around in there.

According to the report, there’s still some “scattered calcific densities” floating around but the large 8mm behemoth is gone. Yay!

Here’s the thing, though. Have you ever read your own medical records? If you haven’t, you better make sure you’ve got a sense of humor. A cup of espresso wouldn’t hurt either as there’s a lot of repetition and technical language. But the sense of humor is important because, well… Here’s a quote from my X-Ray report…

The bowel gas pattern is normal… The bones are grossly unremarkable.

Say what!? For the sake of decency, I’ll leave my bowel gas pattern to the professionals, but my poor bones. — They say beauty is only skin deep but, apparently, my bones are “grossly unremarkable”.

Ah well. It made me laugh and I hope it did you too. 🙂

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Recovering very nicely, thank you.

Dear readers, the following post was intended for publishing on Friday, the seventh of February  Unfortunately, as I was recovering from surgery, my close friend Fran passed away. I’m posting it anyway, along with an addendum, because it illustrates the kind of winter I’m having. 🙂

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So… I had Lithotripsy a few weeks ago. Was it painful? Not really, but I do feel as if someone kicked me in the back. The forecast for the day of surgery was heavy rain turning into wet snow by noon. Great!  My other half was thoughtful enough to reserve a room at the small hotel where he works. So, instead of having to wait in the rain for a bus at 4:30am, we could walk just a few blocks to the hospital.

I’m fortunate to live in Philadelphia, a city that has one of the largest and best healthcare networks in the country. We have Hahnemann, Jefferson, Temple, and the University of Pennsylvania health systems all within the city limits.

I was the first patient Monday morning. Lucky me! The staff was thorough. At every step of the way I was asked to recite my name, date of birth, allergies, and the Magna Carta, then recite it all once more as I lay on the OR table. This was my fifth kidney procedure, so I’ve gotten to know most of the Pennsylvania hospital staff pretty well. One of the pre-administration lab technicians has a wicked sense of humor. I guess you’d have to if you spent your day stabbing patients in the arm in search of a good vein.

So I was laying on this strange operating table with a cutout underneath in which a water filled gel pad that emits sound waves protrudes. The doctor maneuvered me over the gel pad. The technician strapped me in. The anesthesiologist joked with me that I keep coming back for surgery because of their excellent selection of anesthetics. I don’t remember anything after the oxygen mask was placed over my face. I suspect the anesthesiologist slipped me a Mickey.

The next thing I knew, a nurse was hovering over me with a big smile. “How do you feel?” Like I want to go back to sleep. “Fine”, I said. I really did want to go back to sleep, though. I also wanted some more of whatever it was they gave me for pain. The chorus of The Floaters’ classic “Float On” comes to mind. 

“Float. Float on…”

 

After an hour or so of “recovery time”, I was wheeled out to the lobby where the reality of the day’s snow accumulation stared back at me. While waiting for a cab, we saw a bus and took it.

It was good to get home.

I made myself comfortable on the sofa to wait for love to return home from the pharmacy, bearing gifts of antibiotics and pain killers. You know when you think everything is okay, but you feel just a little off? Not anything major, just ever so slightly off center. That’s how I felt. The more I moved around, the less like myself I felt. Maybe I’d be better off laying down in bed.

Oh right… freshly cleaned sheets. YAY!

I turned on the TV, changed into some comfy clothes, and climbed into bed. That was all she wrote. I was out! Gone! I awoke the next morning stiff and achy and determined not to spend the day in bed.

I still feel a bit sore, but I’m doing well and trying not to use the pain killers too often.

Addendum…

A week later, we took advantage of the break in the snow by climbing up and inspecting the roof and gutters. Because I have a longer reach than Love, I laid down on the roof and reached over the edge to attach the Roof & Gutter Deicing Cable. As I reached and stretched, I heard what sounded like a snap, followed by a sharp pain in my rib, which was pressed against the edge of the roof. I’m not gonna lie. I panicked. After a few moments, I took a couple of deep breaths to inflate my lungs. There was pain, but nothing that indicated a broken rib.

So, if you need you walk shoveled or someone to carry your groceries in from the car, please be kind enough to ask someone else. I think I’m gonna lay low for a while. 😮

Saying Goodbye To A Dear Friend.

I had intended a Friday post about my recovery from lithotripsy, which is progressing smoothly and without complications. Unfortunately, Thursday morning I received incredibly sad news. A very close friend lost her battle with uterine cancer. I am heart broken by the loss and angry at the circumstances around which she died. The rest of my day was spent in a fog. After not being able to sleep, I found it helpful to just start writing. The following unorganized mess is more therapy for me than anything else.

In the years that my other half and I have been living on this little South Philly block, we’ve established close friendships with our neighbors. With a few exceptions, we look out for one another.

I met Fran through a friend and neighbor who lived two doors down. She was moving onto our block. With her sharp wit and wicked sense of humor, Fran fit right in. She was the kindest and most generous soul I have ever had the privilege to know. That’s not hyperbole. There was nothing Fran would not do to lend a hand to anyone in need. If it was within her power, it was done.

First Friday Sushi Lunch

A perfect example of our First Friday Sushi events. 🙂

My friendship with Fran developed slowly. We bonded over our Italian heritage, and gastronomic pleasure, which included first Friday lunches with our friend Scott. I’ve often bored you with pictures of sushi and sashimi. Fran was a vegetarian, but that didn’t prevent her from enjoying her sushi. 🙂  She and I had an ongoing dialogue about ways to recreate meat-free versions of childhood dishes. It wasn’t uncommon to see either of us carrying plates of food from one house to another. Fran was the inspiration for some of my favorite epicurean experiments.

About eighteen months ago, Fran began to experience pain and bleeding. She was in her sixties so menstruation was out of the question. After a few months of doctors and tests and more doctors and even more tests, it was determined that Fran had stage 3 uterine cancer. It was emotionally crushing.

Our monthly lunch dates continued even as Fran started chemotherapy, but tapered off as some of her experimental treatments took their toll. She was listening to advice from conflicting sources, and people with no medical training who claimed a certain food, vitamin, or magic root was a cancer cure. She went gluten free, tried a macrobiotic diet, and went to extremes to find and eat only organic fruits and vegetables. Meanwhile, she was asking Scott to pick up bagels from Dunkin’ Donuts.

Now, let me stop here for a minute and assure you that I am in no way blaming Fran for her illness or worse, her death. That would be absurd and cruel. I am Pro-Choice. Being pro-choice means allowing a person autonomy. I’m angry because there is so much misinformation being disseminated out there. She was scared. She was reaching for anything that might give her hope. I feel, however incorrectly, that Fran was taken advantage of. I  mentioned the Dunkin’ Donuts because Fran needed to get food into her body. When you’re perpetually nauseous, any food is better than nothing. We encouraged her to eat whatever she could keep down. You’d be surprised at some of the odd things she craved. Fran had an affinity for pickled cherry peppers stuffed with prosciutto and provolone. We asked if she might not be pregnant. {:-)

Last summer, Fran found out about a Vitamin C therapy. It’s an alternative cancer treatment that involves massive doses of vitamin c administered intravenously. Since it could be administered while a patient was also undergoing chemo, Fran signed up. The treatments were hell. Chemo was bad enough, but on the days she received the vitamin C, she was in bad shape. It often took two days for her to recover from the therapy. By January, the oncologist was refusing to give her chemo because she was too weak. The best they could do was rehydrate her with saline and send her home. The vitamin C had done more harm than good. It was clear that Fran’s time on Earth was limited.

During the worst of her illness, it was Scott who did most of the heavy lifting. When Fran needed something, it was Scott she called. Scott taxied her to doctors, treatments, and trips to the grocery store.  Fran’s illness took it’s toll on him. Her death hit him hard. He’d been through this once before when longtime friend and neighbor Mary Ann died just a few years ago. This time was worse because he and Fran were real close.

Fran was rushed to the ER Tuesday night. She was in pain and having trouble breathing. She was admitted to the hospital, where they treated her pain. There was nothing more they could do. Her siblings took shifts sitting with her in the hospital room. Fran passed away 1:00 am Thursday morning. Her brother and one of her sisters was in the room with her.

There’s going to be a viewing next week, followed by a Wiccan ceremony. Fran was a Wiccan high priestess. I’m so proud of her sister, who is Roman Catholic, for adhering to Fran’s wishes.

I’m not sure how to wrap this meandering mess up, but I suspect you will all understand. This past year has been a rough one. There’s been enough sickness in our little burg. So you’ll forgive me if I tend toward the ridiculous sometimes. It’s a hell of a lot better than dwelling on the sadness. Besides, I’d much rather remember the happy, joyful soul that was Franny T.

This Is My Very First Time. Please excuse me if I ramble.

What a great weekend, right?

Saturday was a beautifully warm day in the midst of bitter cold snap, so I went outside. Not because I wanted to. I dislike crowds and as everyone knows, winter weary people flood to open spaces at the first hint of warmer weather. Saturday was no exception. The reason for my trek into town was to buy a couple of pairs of loose fitting, heavy weight (read ‘warm’) athletic pants that I can wear after my outpatient surgery on Monday. I’ll be having Lithotripsy, a process of breaking up kidney stones with ultra high frequency sound waves. I’m told there will might be pain, so loose fitting clothing is in order.

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Broken 6mm kidney stone (left) compared in size to a dime (right).

This will be my fourth medical procedure to remove kidney stones. I’ve had more stents in me than I’d like to remember. But this is my first lithotripsy. I’m a little nervous, so you’ll have to excuse me if I ramble on. The procedure is fairly straight forward. I’ll lay on a platform with an opening through which a gel sub-woofer will blast death metal at my kidney. The stones will pulverize. The end. Easy peasy! The thing that makes me nervous though, is that one of the stones is 8mm in diameter, or about a third of an inch. I passed a 6mm stone last year (pictured on the left).  When you vibrate a large stone against the soft tissue of a human kidney you risk further damage to the kidney. Internal bleeding is a very small but real concern. The benefits vs. risks have all been explained to me, so I’m going into this with open eyes.

I’ve been dealing with kidney trouble for some time now. Technically, I have kidney disease. Though I prefer to think of my right kidney as a spoiled brat that is starving for attention. I don’t talk about it much because it doesn’t define me. When stacked against my friend’s end stage uterine cancer, my health is pretty damned good. I don’t like to complain about the small stuff. I can handle the small stuff. Every now and again though, my kidney makes itself known. That’s when you’ll here me, loud and clear.

2012 kidney surgery scar kinda looks like a railroad track.

2012 kidney surgery scar kinda looks like a railroad track.

Friends and family all have their “helpful hints”. The number one I receive is to drink plenty of water and cranberry juice. (For the record, I do drink plenty of water. I’m never without a glass of bottle of water, preferably with a slice of lemon.) The other big suggestion is to lay off the salt. Everyone blames salt. Poor Salt. My kidney stones aren’t sodium based. Nope. Mine are special. My kidney stones are made of calcium. According to analysis, my stones are Calculi composed primarily of: 40% calcium oxalate monohydrate, and 60% calcium phosphate (hydroxy- and carbonate- apatite). In other words, my body doesn’t break down calcium as well as it should. The lazy bum! It has something to do with my parathyroid, a gland I had no idea existed until just a few months ago. My doctor put me on potassium citrate and suggested I drink lots of lemonade. (Apparently, lemonade helps break up the calcium). My dentist however, is horrified by the thought of what all that citric acid is doing to my tooth enamel. I find this hilarious!

My doc put me on a “low oxalate diet” which means I can’t eat as much of those leafy greens that I love so much. Seriously, I do love my greens. I told my doc, “Good luck with that.” I’m willing to reduce my intake of leafy greens, but I just can’t give them up completely. I can go without sweets, but broccoli rabe and I are deeply in love.

Today, as per doctor’s instructions, I’m eating light. Salads, watery soup, and clear broth are the order of the day.  No dairy – not even with my coffee, which is frowned upon but not forbidden. Mayo and cheese count as dairy, right?  I can have juice, but no pulp. Why don’t I just kill myself now? Actually, it’s not all that bad. I’ve got plenty of homemade chicken stock in the freezer.Add a few carrots, some celery, and… dinner!

Did I happen to mention it’s Super Bowl Sunday? No wings for me! — Wait! Is killing myself still an option?

Instead of preparing for the “big game’ I’m doing laundry, setting clothes aside, and putting fresh sheets on the bed. After a hospital stay, so matter how brief, there’s nothing better than coming home to freshly cleaned bed sheets. It’s the little things in life that make me happy. Isn’t that what life is all about? Being happy? 🙂

Stay tuned, dear readers. Maybe I’ll take some more pictures. 😉

PS: Here’s a fun little video I found that demonstrates, in layman’s terms, what I have to look forward to…

What’s On My #GayAgenda Today?

  1. Check on sick neighbor.
  2. Grocery shopping.
  3. Pick up medication at pharmacy for sick neighbor.
  4. Pay some bills.
  5. Drop off medication to sick neighbor.
  6. Do laundry
  7. Make dinner.
  8. Bring food to sick neighbor.
  9. Run dishwasher.
  10. Write a thank you note to the Denver Broncos for the great time last weekend. ;p  <—- HEY!!! How did THAT ONE get in there???

With the exception of the Denver Broncos note, this was my agenda from last Saturday. These things occupy my time pretty much most days. My sick neighbor is a sixty-three year old woman who is in the end stages of uterine cancer, which has spread through her body. Someday I’ll write a post about it, but not now. I’m just not ready to put all that into words. I wrote this list to demonstrate that my life is pretty much like everyone’s. — With the exception of looking out for my neighbor, which I believe anyone would do, my life is boring as hell.

World AIDS Day

“There will never be a cure! Big Pharma is making too much money stringing me along from one treatment to another.” – Sam W.

In order to help keep AIDS awareness in the minds of people around me, I thought I’d share some of my personal experiences, and how HIV/AIDS has affected people in my life. The following is pulled together from casual conversations with my friend Sam, whom I’ve known for almost two decades. I’ve entered direct quotes as I remember them. Everything you read here is fact.

Sam, quoted above, has been living with AIDS for a little over twenty years. He tested positive in 1991. His survival, he says, is a double edged sword. He feels fortunate to be alive but, like many LGBT folks our age, most of his close friends are gone. “There’s no one left!” he says. “In the early 90s my friends were dropping like flies, one after the other. I thought I was next. My doctor told my parents to make my final arrangements. I was prepared to die.” Sam told me that when he didn’t die, he went into a depression. Psychologists call it Survivor’s Guilt.

Though ten years younger than Sam, I can easily empathize. At the height of the pandemic, AIDS took most of my friends. But the friends that I lost were relatively new friendships. Sam had known most of his friends for ten, fifteen years. You’re not supposed to lose so many friends at such a young age.

Sam says his biggest lament is the cost of survival. He was fortunate enough to have had a decent enough employer who provided him with healthcare, and who was understanding enough to alter his work schedule as needed. He worked for as long as he could, but by the mid-nineties his health had so declined that he had no choice but to go on Social Security Disability and wait for death. Then Protease Inhibitors came along.

The new drugs that saved his life cost a small fortune. Sam takes three Anti-HIV pills which cost about $900 per bottle, and a handful of medications to handle side effects that cost between $20 and $150 per bottle. And that doesn’t include regular blood tests, doctor visits, and medical procedures.

“Remember the assisted suicide controversy in the 90s?” he asks. “All those conservatives wanted to hang Dr. Kevorkian! Now they want to cut my benefits! (Social Security, Food Stamps, Medicaid, Medicare) Where’s their compassion for the sick and dying, now?? If you don’t want to help me live, then allow me to die!”

Sam assures he doesn’t really want to die. He’s understandably frustrated by a system that has failed him. It would be difficult for him to go back to work. He couldn’t even afford a part time job. If he went back to work, he’d lose his healthcare. If he lost his healthcare, he’d get sick again and most likely die.

In a perfect world, Sam could rejoin the workforce, keep his healthcare, and maybe pay an affordable percentage of his salary back into Medicare. The trouble is the cost of prescriptions. As long as he has to take those expensive medications, he can never leave Social Security.

I reminded him of the recent advancements in developing a vaccine. “There will never be a cure!” he says ” Big Pharma is making too much money stringing me along from one treatment to another! It’s a scam, and the American people are too blind to see it!”

Though careful what I say to him, I can’t help but think perhaps he’s right. There’s no money in cures. The money is in treatment. If you cured cancer tomorrow, all those Cancer Treatment Centers would go bankrupt within months. Susan G Komen would cease to exist. I hate to sound pessimistic, but I have little faith in a system that values money over people.

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The best I can offer is try to educate people around me and hope that they pay attention.

AIDS (Acquired ImmunoDeficiency Syndrome) has been around for three decades. Some of the biggest myths about AIDS that still persist today include, “It’s a gay disease” “It can’t happen to me” and “There’s a cure”. AIDS is not a “Gay” disease. It CAN happen to you. There is NO cure.

Treatment has it’s own issues. Side effects of Anti HIV medication include, fatigue, neuropathy, fungal infections, liver damage, heart disease, kidney disease, body fat re-distribution (buffalo hump), chronic headaches, nausea, vomiting, vision loss, blindness, high cholesterol, diarrhea, constipation, dementia, calcium deficiency, loss of bone density, death and more.

  • Sounds fun, right? Especially when you consider prevention is as simple as proper condom use.
  • And ladies, because men are so reluctant to wrap it up, there’s a condom designed just for you. – Introducing… The Female Condom!

Knowing all of this, would you rather protect yourself and your loved ones, or spend the rest of your life at a doctor’s office?

To learn more about HIV/AIDS, check out the NIH AIDS info page.  http://www.aidsinfo.nih.gov/

A Word About Men and Breast Cancer…

I had a mammogram two years ago.

MjAxMy01NDIzYzI1NmVjZGQ3MzEyYes. Men get Breast Cancer. Yes. Men get mammograms.

The reason for my mammogram was the same as for anybody. I felt something on my chest that shouldn’t be there. [enter obligatory “extra nipple” joke here]  The small tender mass was benign, but it was removed anyway because of the discomfort it caused.

I’m 6’1” tall. The technician who did my mammogram was a petite 5’ Asian woman. She was polite but direct. She pulled and stretched my chest like she was kneading dough, and managed to get the necessary imagery from my nonexistent breasts. The exam was mildly uncomfortable, but painless.

We exchanged phone numbers, and…

If the technician could get a usable image from me, there’s no excuse for any woman not to get a mammogram.

As far as I know, I have only one family member who had breast cancer. It was the 1970s. My family whispered the words “Lady Cancer”, as if saying cancer aloud would somehow spread it among the gossipers. My great-aunt Mary died within a year of being diagnosed.

We’ve come a long way since the 1970s. We no longer group ovarian, uterine, and breast cancers together as “Lady Cancer”, but misconceptions persist.

Yes. Men get breast cancer. And yes, men should get mammograms.