Yeearghh! The many bros, dudes, bruhs, he-men, and tough guys, wanna-be or otherwise, cast their votes and got what they wanted. They wanted to take back control and responsibility. Well, sound the trumpet–unless that’s not manly enough and then use a ripping guitar power chord–and let’s, to pull a common quote from their favorite movies, do this thing!

One of many issues bros and tough guys are ticked about is the audacity of women about this abortion issue. Bros want say. Things have been getting rough in many states for women seeking abortions, and they appear to be getting worse, and we need to put in place some laws to get men in the responsibility and accountability game–just like they want.

Many women who don’t have access to appropriate ob/gyn care because their caregivers are scared of oppressive or even ambiguous state laws are becoming very sick, some are unable to have children because of their complications, and some are dying. Rough stuff. (Read this eye-opening Atlantic piece “What Abortion Bans Do to Doctors.”)

I admit, as a dude myself, I’ve never been pregnant, but I understand even in the best circumstances it’s pretty tough on the body, and it’s time-consuming and expensive. So let’s figure out a way to even things up fully to get men in on the responsibilities that come with pregnancy in states that are restricting access not just to abortions but, inevitably, to ob/gyn care. We need laws! (I tried to think of catchy names but am open to suggestions.)

DNA: You Can Run, but Your Sperm Can’t Hide. The cornerstone of this legal framework is based on the simple DNA testing that’s available, so we can easily link a father to a child-to-be. We’ve got the science, so we can make an easy genetic link to develop the rest of the important responsibility sharing.

Show Her the Money. Some state laws are making it prohibitively expensive to get ob/gyn care. This law can be based on a simple financial equation to make sure the boys, the breadwinners, are in the game.

Time in a Body. If a draconian state abortion law renders an otherwise healthy woman sick or disabled, this law makes sure her man will be there. The government will support both of them on disability until everybody’s up and at ’em–no matter how long it takes.

Vampire Rule. Let’s get into the details (apologies, they can be a little messy with this darn abortion thing), starting with the Vampire Law. When women don’t get proper care, it can be, well, a bloody mess. Women across the U.S. are losing a lot of blood because of abortion restriction laws, so dudes who want to go punch-for-punch now must go pint-for-pint: Yep, they give a pint for every pint the pregnant woman loses.

Gut Punch. Speaking of punching… my understanding is that women who cannot get proper health care for their pregnancies go through considerable physical pain. Bros should be compelled to join in that pain and suffering. This could go two ways. One is a punching robot that uses AI to deliver a precisely calibrated punch in the gut in accordance with the woman’s pain–think Rock ‘Em Sock ‘Em Robots. If robots seem too weirdly futuristic, real people could volunteer. As part of my patriotic duty, I’ll step up as a gut puncher.

Walk a Mile in My Shoes. With the uncertainty of these laws, women are having to drive, take trains, or, in emergency cases, be airlifted out of their state to one where they safely have an abortion–even to save their lives! To show solidarity, men will have to walk that distance. Maybe they could even be rigged up to treadmills to contribute to the power grid.

Bros got their people in charge, now of course, they must want a cut of duties and responsibilities: C’mon, they wouldn’t want it any other way.

Tags: health & medical, virtual children by Scott Warnock by Scott Warnock
No Comments »

It wasn’t complicated. He had fallen at dialysis a few weeks ago, an event that occurred only a week after his surprisingly speedy recovery from having a pacemaker implanted.

He fell at dialysis at least in part because he refused assistance when he needed, mid treatment, to use the rest room. He went in, and then down he went.

Following that fall, tired of dialysis, of the, to him, shackling dependency that accompanied it, he said, while in a hospital bed at Cooper, “No more.” Maybe there were other factors. COPD. The elusive pains of aging. The ever-shrinking world that accompanies getting old, especially in our culture.

It was his decision and that was it. I only made one pitch for future possibility, describing a few things I thought he might consider living for, but he had done the mental calculus about those things and was moving forward. When I brought up my kids, his grandchildren, he said, “That’s your thing. Let’s talk about my thing.”

My brother and I respected the decision.

Years ago, I read an article in The Atlantic about the burgeoning issue of elder care in our culture. The article described it as a largely hidden problem—until we talked about it, maybe even with some stranger on a train, and then we realize how many of us share these challenges.

Decisions. Once you say no more, there still needs to be a place. You don’t just welcome death and lie in the grass and he comes to get you.

There is a lot of waiting. Where would it take place?

He posed the option of going to his house—to what?: To being bed-ridden and alone?

We mulled it over and then decided he would experience hospice at our home.

My wife was a damn hero about it all. She created a bright, sunny care space in our front room. She hung a painting of the first night game at old Ebbet’s Field and a display of his Marine service medals, featuring two Purple Hearts from Korea. Family photos everywhere. A room that colorfully said “home.” He could be hard-hearted, but he said he marveled at the love around him. He said it in a way that affirmed for me how little of that he had had in his life.

She took the job seriously, compassionately. I would find her, day after day, sitting in the front room with him, working on a puzzle.

The kids were great. They handled this process as best they could.

Samaritan Hospice—what would these people be doing if they hadn’t found the call for this kind of work? Their efforts were extraordinary.

He went through an initial period of calm, but then he became frustrated and angry. “It’s all shit!” “Nothing’s worth a shit!” Again, you can’t just lie down and will death. The body is tough, even when denied food and even finally drink.

Other moments. Two nights in, we found him on the floor without a stitch on. There was equipment around the railed hospital bed. There was no way we could figure he could have made it to the floor without falling, but there was no thump. Slid down, amongst the equipment? There he was, while the three of us tried to shake out the cobwebs and figure out what to do. You don’t call 9-1-1 in a hospice scenario. Finally, we had this exchange:

Me: How did you get up?

Him: Up?!

Me: Yeah, we found you lying here on the floor.

Him: Well that’s not really up, is it?

He and my wife got to, uh, know each other. Without dialysis, the body becomes intolerably itchy, and she regularly saw to that. One day, he said, “Scratch my heinie. About this time we’re pretty good acquaintances.”

At one point, my wife and brother thought it was surely over. I arrived home from work, and they rushed me into the house for the final good-bye. I sat for a minute, but then, unconvinced, I walked away to get a sandwich. He was lying there, unresponsive, and then popped up and looked at them brightly: “Hi guys!”

Anything complex grammatically and semantically became difficult then impossible. His vocabulary funneled down to simple commands: “Up!” “Juice!” “Drink!” and of course “Death!” This life-long accountant, trying to explain, in head-gripping frustration, about how he wants to count the “home runs” in the “fiscal quarter.”

Discussing the dying process is always a curious thing, especially in our still virtual era. It’s weird. You’re going through this at home, downstairs, and then you go upstairs and log in to a virtual meeting. It seems especially inappropriate to drop it on people in a Zoom meeting or on email.

There are renewed connections, though. I talked to an aunt and cousins in California I haven’t spoken to in decades.

But my dad was a hermit. Misanthrope. We didn’t have a ceremony, because he was outside the warm sphere of humanity, seemingly by choice. I had to laugh when I came across this a few weeks afterward:

“I got nothin’ against mankind. It’s people I can’t stand.” pic.twitter.com/cThtEx7emk

— Super 70s Sports (@Super70sSports) March 18, 2022

My work handled it all great, humanely. So did my wife’s. So did my brother’s. As people around us found out, they did what they could, and it was always enough: A little food. Some conversation. Contact.

My brother found podcasts of old games, including the greatest NFL game ever played, the Colts-Giants 1958 NFL Championship that my Dad not only attended but still has the ticket stub. My wife created a play list. I couldn’t help but pause when I heard Frank Sinatra’s “My Way,” as he was fading, fading…

Then the rattles. No real pain, but total disconnect.

That last night, two-and-a-half weeks after he arrived, I cautioned my son when he was out later than our bedtime not to go in and check on Grandpop, as I didn’t want him to make the unfortunate discovery. My son came home at 12:30 and did peek in: Life was soldiering on.

I got up 6 a.m. the following morning and he was gone.

Tags: ends & odd, health & medical, virtual children by Scott Warnock by Scott Warnock
18 Comments »

In the spring, as we were whiling away pandemic time, I decided to attempt to rekindle my short-lived TikTok fame by making a video about badminton.

Yeah, let that sentence sink in.

Unfortunately, in trying to please my small and ever-dwindling fan base, I stumbled in a rut and tore the meniscus in my knee.

Some fun.

I hobbled around for five months before determining that I had to address it. The surgery is tomorrow.

With that decision, I entered the insurance maze. Realize, no one was a malicious player–in fact, everyone I worked with was friendly and helpful–but the process was like a part-time job.

Once upon a time, I went to my primary care because that’s where the process all starts for these things. That makes sense. Got it. From there, I needed an MRI. Check. Then I was off to see the knee specialist.

I have good, maybe great, insurance. I work for an employer that has a preferred network. I searched the nearly 24,000-line tier 1 provider spreadsheet for a knee doc, and I found one.

I went to the office, got some x-rays and had an eval. He sent me to the surgeon. I went to see the surgeon and the NP he works with, had a more detailed eval (like I said, the individual players were great), and set up the surgery.

During the course of all this bills and paper copy EoB (explanation of benefits) forms were arriving. Sometimes I was billed. Sometimes I wasn’t. Sometimes I paid on the spot. Sometimes I didn’t. I tried to keep up, matching EoBs (they can be a bit confusing) with bills. I was also trying to leverage the waning dollars in my health care spending account–see, I’m a smart consumer!

The big day crept closer.

I of course needed a CoVID preop test. I also needed to set up postop rehab. I looked through my big spreadsheet and found a tier 1 rehab provider. When I called, though, I was told they are not “capitated” to my primary care, so, as a super helpful person there helped me sort that out–including by making a phone call to my insurance for me–I can’t go there.

I called a “capitated” rehab center. I can go there, even though it’s more expensive than the other place. Another nice person gave me a mystery number I had to provide to my primary care, which I did. I called back the primary care to give them that number for a referral.

I was feeling I was almost over the finish line, but near the end of my call about the rehab referral it was mentioned that I might need a “clearance” or “referral” for the surgery. I went from befuddled to panicked, because I thought we did that from the get-go, and then I realized I didn’t know what “that” meant! What were these terms?!

I scrambled to connect my fine primary care folks and the helpful surgeon’s assistant. There was a moment of concern, but they took care of it.

Apparently I am ready, although during the course of those conversations and the conversation with the rehab place I was also told I need a “script,” and I was initially befuddled again until I was assured the “script” would be sent out with me following surgery.

I’m an organized guy. I have a folder for all this stuff. Nice notes. A filing system powerfully behind it all.

How do other people deal with all of this, I thought? Or, wait… am I other people? Pride, indeed, cometh before the fall.

Anyway, I’m ready for the big day–I think.

But this is more complicated now. CoVID. I have to think about the implications of going to the hospital. I also have to think about the implications of asking health care providers to do this job when they might be doing other jobs.

I’m at the eve of the event (who knew this would be the biggest “eve” of the month for me?). If something prevents the procedure, I’ll realize there are more important things in the world. I’ll wait, and then re-open up my little file system and figure out where we left off.

Tags: health & medical, virtual children by Scott Warnock by Scott Warnock
No Comments »

As the rate of COVID cases in the U.S. continues to rise, I’m struck by the number of people I speak with who say, honestly, that they don’t know or haven’t heard from anyone who has personally dealt with it.

Well, if you were one of those people, the moment you started reading this, that changed. My family has had to deal with COVID-19. My wife and 19-year-old son both got sick, both got tested, and both were positive.

My son, who hadn’t been feeling well, got tested at about 10:30 in the morning and received the bad news a few hours later. My wife then went to a different testing center with my younger son; it took several days for her results to be sent to her.

My son was sick for a few days but pulled a quick, full recovery. My wife, an otherwise perfectly healthy person [of indeterminate age], was increasingly slowed up as the days went by. She had the issue/complication of losing her sense of smell. She was lethargic. She spent nearly two weeks in the front room, doing puzzles and getting furious at the news, which couldn’t have helped.

Neither of them had a fever.

Because the other half of our household, my younger son and I, showed no signs, we had to divide up the place like post-WWII Europe.

My younger son ended up being negative, but it took many days for his results to come back negative. I was going to get tested, but my quarantine status was self-isolation, and that was not going to change regardless. Plus, with the long waits they experienced at the testing center, I was reluctant to take up a testing slot for someone who might really need it, and when I did finally did call a center, the person I spoke to pleasantly discouraged me from coming in since I was asymptomatic.

I’ll get an antibody test at some point.

Many of you know our family personally. For some of you the relationship is purely digital. You should of course feel free to have your own macro views about this pandemic, about masks, about rates of infection, about data, about politics.

But if you’ve made it to the bottom of this short piece, you now can’t say, “I don’t even know anyone who’s had to deal with COVID.” If you want further reinforcement of the message, feel free to stop by. But I’ll ask you to keep your distance for just a few more days–and that’ll be for your own good.

Tags: health & medical, virtual children by Scott Warnock by Scott Warnock
1 Comment »

The unexamined life is not worth living. We need more tests.
–Socrates

That which does not kill you makes you stronger, but you still shouldn’t touch your face.
–Nietzsche

He who is unable to live in society, or who has no need because he is sufficient for himself, must be either a beast or a god. Either way, you should maintain quarantine for at least 14 days.
–Aristotle

So act that your principle of action might safely be made a law for the whole world. Stay home, you idiots.
–Kant

The first precept was never to accept a thing as true until I knew it as such without a single doubt. But even I wouldn’t call the Coronavirus a hoax.
–Descartes

I don’t know why we are here, but I’m pretty sure that it is not in order to enjoy ourselves. You might want to cancel your house party.
–Wittgenstein

Attention to health is life’s greatest hindrance. Nothing in the affairs of men is worthy of great anxiety. Let’s go clubbing.
–Plato

The life of man is of no greater importance to the universe than that of an oyster. So let’s get the economy going and open up those businesses, especially the ones that sell oysters.
–Hume

Success depends upon previous preparation, and without such preparation there is sure to be failure. That’s it—that’s the quote. This isn’t a joke.
–Confucius

Tags: health & medical, religion & philosophy by Scott Stein
Comments Off on Coronavirus wisdom from great philosophers

I think people are afraid to ask me about the cancer these days. That’s kind of funny when you think about how forward and open I have been with all of this. To be fair, though, I suppose it’s possible that they are waiting for a blog explanation? Looking for me to fill in the blanks? I may need to fill them in for myself, as well.

I think that there is usually some kind of grand announcement. Patients get a PET scan or MRI and then a doctor pronounces them NED– no evidence of disease. That hasn’t happened for me. It’s been a little more foggy, so I’m clearing it up for myself. It’s probably time I dragged you into the clearing.

After my surgery in April I was told that my surgeon got clear margins, meaning that as far as anyone can tell she cut out all of the cancer. We (James and I, upon meeting the oncologist and resident) were told that we were “talking about being cured” and that I was “basically cancer free.” Now, the surgeon had already recommended radiation therapy, but that is usually done later (or in place of chemo, like with a lumpectomy). I knew I didn’t want radiation. If my surgeon hadn’t taken so many lymph nodes– like, all of them– then I might have been more interested. However, the lymphedema risks with radiation, along with the cardiac risks associated with radiation, outweighed the added benefit for me. But, back to the wishy washy oncologists who never used the term NED. They strongly recommended chemo to lower the risk of recurrence. Statistically speaking, it does this for many people. I had a previous oncologist do a test on my first biopsy tissue called a Mammaprint. It showed me at a higher risk for recurrence and recommended chemo. Have I mentioned all of this before? Anyway, I never wanted chemo but obviously I did the chemo. Still no one handed me a NED card.

Now, I’ve been working with an integrative oncologist in Az, right? He has done some blood tests. We did cancer antigen tests before surgery (elevated), after surgery (normal), and last week (normal). We also did something called a Biocept test. That test came back at 0. Goose egg. No circulating tumor cells. Still no NED card or announcement.

Here’s the problem: that pesky little thyroid nodule. Technically, it’s cancer. But, it isn’t doing anything. It’s just sitting there. As a matter of fact, it shrank a smidge, even though chemo has no effect on papillary thyroid cancers. I’m basically working at willing it to vanish. The surgeon who wants to take it out is checking on it every four months. Meanwhile, after I went vegetarian all of my thyroid numbers normalized. On paper, my thyroid is healthy. Just don’t look at the ultrasound. lol

So, I’m like 99% NED.

I’ll have another thyroid ultrasound in March. I had a clear mammogram on the remaining breast in December. I’ll have an MRI in April.

They took out my port, which was HELL. I continue my quest to educate the medical community regarding the fact that natural redheads need more local anesthetic. They continue to torture me, only coming round to my side of things (and reading the fucking studies) AFTER they have tortured me. The port removal left a sizable scar. I wish that I had thought to ask them to make me a lightening bolt shaped scar, because sometimes it aches, and I’d like to tell my children that it hurts because Voldemort is nearby. Also, he knows you didn’t do your homework. He’s not happy.

I have not had any reconstruction. I would very much like some of that. However, we got some new insurance this year. Turns out it’s awful and none of our doctors (not a single doctor at Moffitt) are in network. So, I’m plastic surgeon shopping again. I want something called a DIEP, because I don’t want implants and I just want to do this once. Not everyone does it. It’s a difficult surgery, you want someone who does it on the regular. It’s a six week recovery time kind of thing. Maybe later in the year.

My OBGYN wants to perform an oophorectomy— I like saying that word out loud– and I just might let him. It lowers my risk of recurrence about the same amount as taking Tamoxifen, which I am not taking because of side effects and also because I have a genetic mutation that raises my risk of blood clots. I have an appointment to discuss this with him further in June. In March I have an appointment with a Naturopath OBGYN to discuss with her first. I generally find that the naturopath md’s are more honest with me about risks and side effects.

My eyebrows are back. One of them is predominantly grey. My eyelashes are nearly back. Not quite as long as usual yet. My hair looks like I cut it this way on purpose, sort of. It came back very grey and very curly, so, ugh to that. I have colored it and am having a hard time getting to a shade like my natural color. So, no, chemo won’t give you bright red hair. Don’t try it. On a happy note, my pubes came back their regular lovely shade of strawberry blonde. Maybe you were curious, but afraid to ask. Now you know.

I mostly feel ok. I get tired easily. Some days I just don’t have any energy. Some days I can really get a lot done. I take a lot of breaks. I take a ton of supplements, still. They help. I know this because I’m out of two of them and waiting for them to arrive. I’m told that it could take me a year to feel like my old self. My good days are pretty freaking good, though, and my bad days will never be as bad as last year’s bad days.

I think that should take care of most people’s questions. I feel cancer-free. Sorry if I posted links that I’ve posted before. It’s just easier than going into long explanations. I mean, you’d rather read about my pubes, right?

Tags: ends & odd, health & medical, science, square one by Van McCourt by Van McO
No Comments »

I know, I know … this is that time of year for resolutions, for goals, for breaking away from habits and all.  But for me, this time around, it’s a time to slip BACK into an old habit I once had.
[Read more →]

Tags: announcements, health & medical by Jeff McDonald
No Comments »

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.

Tags: ends & odd, health & medical, square one by Van McCourt by Van McO
2 Comments »

10. A coffin – that’s the last thing I need.

9. My grandma lives in the past, but in the present she’s dead.

8. I’ll sure be glad when scientists discover a cure for natural causes.

7. The death penalty is killing people who kill people to show people that killing people is wrong.

6. I have some time to kill, but not enough to dispose of the bodies.

5. Halloween is by far the safest day to kill someone and then leave them in a chair on your front porch.

4. Turns out, pounding a wooden stake through a vampire’s heart works even if the guy isn’t a vampire.

3. When I took my items up to the cashier at the spiritualist shop, there was a sign that said “Queue from other side” — so I killed myself.

2. What if the light we see at the end of the tunnel when we die is really just us being pushed out of a vagina into our next life?

1. If you really believe in reincarnation, instead of putting RIP on your tombstone, you should put BRB.
 

Bob Sullivan’s Top Ten Everything appears every Monday.

Tags: Bob Sullivan's top ten everything, health & medical by Bob Sullivan
No Comments »

First, they came for my appetite, and I said nothing.

Well, I said some things, some complaining type things. And I may have had some help acquiring some items that are legal in only certain states, in order to address this thing that the chemo took away. (Thanks again to you-know-who-you-are!)

Then, they came for my hair, and I said nothing because I knew that this was going to happen, so I shaved my head Britney-style. I complained some more, because my hair, ya’ll!

Now, they have taken away my eyelashes and eyebrows. (Yes, I skipped the part where my body hair fell off, because not shaving is clearly a bonus and this blog is not titled “The Upside of Trying to Chase Out Every Last Damn Cancer Cell.”) I was prideful about my eyelashes and eyebrows, which both of my children were lucky to inherit. It was nice to know that in a wig I could maybe fake people out because I still had them. They are nearly gone now. Sigh.

What I have gained is a thing called neuropathy in my feet and hands. Just a little bit of it. A sort of dull feeling in my hands. As for the feet, well, you know how it feels if you step on something and it sticks to the bottom of your feet? Like, a piece of paper or scotch tape? I feel like I have something stuck to the balls of my feet, off and on, all day. That one big Taxol dose added this to my chemo repertoire after only a couple of days, and I’m doing all the extras to combat it that all the people recommend. Trust me, I am reading the stuff and listening to you folks.

I also gained this super fun thing called menopause, which so far is manifesting as a short temper and heat waves that mostly hit at night, like Tom Cruise is dangling from the ceiling holding a space heater. Then I wake up and he gets sucked back into the ceiling and suddenly I feel normal again. I never liked him. Even before he jumped on Oprah’s furniture.

New lower dose Taxol started today. It is one third the strength of the last one, but they gave me the same amount of steroids that they gave me last time. That means tomorrow I will probably feel like I can do all the laundry in the world (that is not an invitation.) We wait for Thursday morning. That’s when the crash came last time, when I sent the kids off to school and then sat down and realized that I felt as though I’d just been hit by a car. I have high hopes for this coming Thursday. Let’s get through this, my body, without so much strife.

Then I can just focus on waiting for all of my beloved hairs to grow back. Good thing we bought me the medicine cabinet with the built in magnifying mirror!

Tags: health & medical, square one by Van McCourt by Van McO
2 Comments »

First, before I delve into a subject about which I receive many questions, I want to say that a cancer diagnosis can make one feel like one’s life is spinning out of control. I’m a problem solver by nature. Spinning out of control is not appealing to me in any way.

I know that for some people, putting all of the eggs into the doctors’ baskets is comfortable and feels right. For myself, I felt that I had some work to do as well. There are measures that one can take to improve one’s health. Duh. We all know we are supposed to be exercising, eating healthfully, not allowing ourselves to get too stressed and of course not smoking and drinking ourselves to death. Well, pre diagnosis I wasn’t eating well, I went through periods of time where I worked out regularly and then I would stop, I was extraordinarily stressed, and about all that I had going for me health-wise was that I have never smoked, did not drink heavily, and was not technically overweight (though I was at the top of my healthy BMI range and had sort of gone past what is appropriate for my narrow frame).

So, you get the diagnosis, you consult with the doctors regarding what they want to do to you, you pick the docs you like best, then what? For me, I had to make the life changes. Not one doctor advised me to do so (and I saw four oncologists and four surgeons). One doctor noticed between visits that I had lost a few pounds and said she thought it was a good idea, but not to go too far. One doctor, who met me after I had lost about 20 pounds, said that people in good shape, like my then self (this was about four months into my lifestyle changes) always have better outcomes, but that she had no real advice for me regarding lifestyle changes or habits to create. I did my own research. I consulted a naturopath MD Oncologist, finally, though I had made all of my changes by the time he was on board. He agreed with all that I had done for myself, and encouraged me to stay on the path.

What had I done? I quit drinking entirely. I started exercising daily. Some days I did yoga and some days the dog got a nice long walk. I was dealing with my faltering thyroid and some energy issues, but these were things I could manage. I began to try to implement some meditation into my life (with this I am still inconsistent at best). I removed myself from some stressful situations. I removed some stressful people. I stopped giving some fucks about some things, maybe kind of a lot of things. I cut out all refined sugar. And at the very start of all the changes, I went back to being a vegetarian.

I was a vegetarian throughout much of my twenties and into my early thirties. I was the kind that still ate cheese and some fish, or the occasional egg. I was also the kind that ate turkey on thanksgiving, even making one myself, once. Turkey is not a favorite of mine. I didn’t crave it for the rest of the year or anything, but in a situation (at a catered work function, for instance) where there weren’t any options, I might have a turkey sandwich. Funnily, most people thought of the sandwich as a vegetarian option. I never understand people who think poultry isn’t meat. (Just as I’m sure there are vegans who don’t understand why I still ate fish and cheese. I knew these things to be “animal products” but, I loved fish and cheese, that’s why!)

During my vegetarian years I essentially had no health issues at all and was thin without ever really dieting. At my height, (5’8″) I’m supposed to fall between 120-169 pounds. In high school I weighed 120, college I was 125ish (I was very active in school as well, dance classes, jogging etc.), and then until about 33 I was anywhere from 125-135. I was the kind of girl who would realize her pants were getting snug and cut back on fries for a couple of weeks. For most of those years I dated vegetarians (not on purpose). I wasn’t exactly eating fruits and veg 24/7, but I ate a lot of dinner salads and a good bit of fruit for snacks. Also, to be fair, I didn’t eat a ton of sugar either, I wasn’t much of a sweets person at the time.

I slowly started to eat more meat products. I discovered frozen margaritas. I started a mean tortilla chip habit. I was stressed at work, and I switched to a job where I was sitting at a desk instead of being on my feet all day. I put on some weight, for sure, and then at 35 I got pregnant. Cue snowball rolling down hill and creating my health avalanche. I never got back on track. If you knew me as a thin person between the ages of 35-45 it was because I was either too stressed to eat or too sick to eat. I had shingles SIX TIMES. 

After my second baby at 40, losing weight seemed to become impossible. Somehow, I didn’t think to go back to how I had eaten before. I tried a myriad of diets. I tried different work outs. I didn’t feel well, my stress level was at my lifetime high, and I was tired all the time. A year before my diagnosis I read The Blue Zones Solution, and thought “this is what I need to get back to!” I did not follow through.

Send in the December 2016 kick in the pants.

First, I read about one hundred articles about sugar. If you like, you can read this one, or that one, or this other one. There are plenty more if you want to go into a google coma. These articles and several of the books that I read also seemed to recommend cutting out refined sugar, so that is why I did that. Then I got back on the vegetarian bandwagon. I remembered from ages back that a vegetarian diet could lower your risk of cancer in the first place, and studies have since come out regarding cancer and meat. Again, google away. I did. I found this, that, this other one, that other one, and more.  If you saw all of those links and went crossed eyed, then click this instead. You’re welcome.

In the end, I just felt like the veg thing was right for me. It worked for me in the past. I know there are plenty of contradictory articles out there. I know that there is some serious research coming out about ketogenic diets and brain cancers (at least that one is a TedTalk). I did all that stuff that I mentioned above, I went vegan for 90 days. I began to consume very little food that comes from a box. Before I started chemo, people ran into me and were in disbelief that I had cancer. I just looked so healthy. I felt fantastic, other than my thyroid issue (which I think I’ve mentioned turned out to be another cancer), and even that situation improved. I wasn’t as tired anymore.

I lost 30 pounds, and I wasn’t even trying to do that. I did not give up all white carbs. I still eat potatoes, rice, and bread, though I don’t eat gobs of those things (I will confess to upping my potato and rice intake during chemo, sometimes it’s just what I feel like I can keep down). More importantly maybe, I added in a ton more fruits and vegetables. Until I got used to eating them I actually counted my servings over the course of the day, with my goal being ten. A quality juicer has helped with that.

When my 90 days of vegan was up I added back in the fish, but left out the dairy. Could I link a bunch of articles about cancer and dairy? Sure, but the cheese just upset my tummy and wasn’t worth the bother. So, I guess I’m officially a pescatarian. When this is all done, no more chemo, final surgeries completed, I’ll still be eating this way. Will I eat turkey on Thanksgiving? Probably. Will I have cake on my birthday? Fuck, yeah. Probably a glass of wine, too. But, I’ll never go back to what I was doing to my body before. If this is all the control I can take over it (besides showing up for chemo and surgery) then this is what I’ll do. I hope that about explains it, because that’s the longest damn blog, ever.

 

Tags: health & medical, recipes & food, science, square one by Van McCourt by Van McO
No Comments »

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.

 

Tags: ends & odd, health & medical, square one by Van McCourt by Van McO
No Comments »

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.

Tags: ends & odd, health & medical, square one by Van McCourt by Van McO
No Comments »

Sometimes something seems like a good idea, and then it seems like the worst idea ever.

I’ve been going to Moffitt in Tampa for all my cancer fun. It takes some time to get there and back. Every time I have an appointment I plan for a three hour minimum trip. I call it the three hour tour (if only it would end with me stranded on an island). I’ve been happy with my care there, minus a couple of hiccups and the very long time that it takes to get certain appointments.

That being said, when my oncologist at Moffitt suggested that I didn’t really have to drive there for chemo if I wanted to get the infusions somewhere in St. Pete, that sounded great. I could get my heart checked at Moffitt and get my port put in, then go to the oncologist in St. Pete who had previously been at Moffitt and now had her own practice. This all seemed like winning to me. Cutting my commute by two thirds sounded like a no-brainer.

As soon as I had the port placement scheduled I called the St. Pete office to schedule chemo. It doesn’t work like that, of course. First you have to get a consultation, and I couldn’t get that until a week after my port was put in. The first warning bell went off when the appointment setter said that it might be a week “or so” after the consultation before I could start chemo. This was due to checking with insurance, time it takes for meds to arrive once ordered, and available openings. I should have told her to forget it and I should have just called Moffitt. I want to get this over and done and move on. I did not call Moffitt. I just said: “Ok.” Sigh.

I waited for the consult, which was today. As I pulled up to the “cancer center” I began to feel like this was not the place for me. It’s in a sort of strip mall. When I walked in, every ounce of my intuition screamed “NO!” There were dirty (yes dirty, like scuff marks and smudges) walls. The chairs were older than the office chairs at my kids’ underfunded public school. The carpet was dingy, the “art” was mismatched and faded. Maybe that doesn’t sound so bad. Maybe I sound like I’ve got a case of the first word problems. Maybe I do. In my experience, though, environment is always a reflection of something, and that something is usually not good. I looked at that uncared for space and connected it to the care that would be given to me. Beyond that, as a chemo patient your immune system is a mess. You can get infections or illnesses so easily. It really should be the cleanest joint in town. There was a giant TV, though, constantly playing local news (cheerful as ever), so there’s that.

Being the nice midwestern girl that I am, I waited to see the doctor anyway. I thought that it was possible that she would be wonderful and thorough, and that the back of the office would be tidier. My blood was drawn and the girl did a great job, it was painless. Then I was led into an exam room. It looked the same as the waiting area, though cleaner. The doctor was lovely. Young, great hair, very professional attire that she probably got at Banana Republic or Ann Taylor. She mostly said the right things. She joined the practice 9 months ago. The doctor she joined has been there 25 years. I mentioned the environment of the office in what I think was a light hearted way, and she said that sometimes the crooked pictures on the walls distracted her while she talked with patients. “But,” she reflected, “the important thing is that our infusion area is comfortable, nice recliners.”

It didn’t look comfortable to me. It looked dark. It looked scary.

She introduced me to the nurse in charge of the scary room. The nurse didn’t even look at me. She just took that moment to tell the doctor that she wasn’t feeling well and list her symptoms.

At the desk as I was leaving the receptionist said that they would call me after my drugs had been approved, ordered and delivered. “If you don’t hear from us in a week or maybe a week and a half, give us a call.”

Say what? If I don’t hear from you? Should I be expecting you to just forget about me?

I replied that if I didn’t hear from them in a few days I would be calling, because I just wanted to get past this. I said it with my nice girl smile, and everyone smiled back.

I was already thinking that they wouldn’t need to order anything for me at all, I just had to settle it in my mind. I called someone who works in the oncology field and has been through this herself. We were 100% in sync. No chemo at this place, not for me.

I called Moffitt as soon as I got home. Hopefully I’ll get a call back tomorrow to schedule my chemo there. More three hour tours to come, but at least I know the care is good, the physicians have high standards, and someone does a good job tidying up at night.

Tags: health & medical, square one by Van McCourt by Van McO
No Comments »

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.

 

Tags: ends & odd, health & medical, science, square one by Van McCourt by Van McO
2 Comments »

May I be wrong.

May I be so wrong.

Having been through this with many beloved relatives including multiple grandparents, it’s not something I wish on anybody, no matter what I may think of them personally. No one deserves to lose their identity—no one’s loved ones should be forced to witness them going through this loss.

That noted, reading Donald Trump’s interview in TIME, it’s hard not to think that something’s… off.

Understand: Trump is at risk. An estimated one in ten Americans over 65 has Alzheimer’s dementia. Trump is the oldest person ever to reach the presidency—he turns 71 on June 14. Beyond this, Trump’s own father had Alzheimer’s.

The Mayo Clinic has listed the signs of dementia. They include:
• Difficulty communicating or finding words
• Difficulty reasoning or problem-solving
• Confusion and disorientation
• Anxiety
• Inappropriate behavior
• Paranoia
• Agitation

At the risk of being blunt: does this sound like anyone we know?

[Read more →]

Tags: health & medical by Sean Cunningham
No Comments »

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!

Tags: ends & odd, health & medical, square one by Van McCourt by Van McO
2 Comments »

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.

 

 

Tags: ends & odd, health & medical, science, square one by Van McCourt by Van McO
1 Comment »

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.

Tags: ends & odd, health & medical, science, square one by Van McCourt by Van McO
No Comments »

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.

 

Tags: ends & odd, health & medical, science, square one by Van McCourt by Van McO
No Comments »