Month: September 2019

Let’s Pretend

Let’s pretend that I don’t have cancer! I’m able to do that quite often these days. It stops for a moment at 7pm Eastern Standard Time (EST – EDT is Eastern Daylight Saving Time – Fun fact!) when I have to pop my pill, but that’s okay. Next week won’t be as easy. Monday I have blood work. Tuesday, oncologist appointment. Hint: They still won’t feel anything. Wednesday, ultrasound. I’m curious about the ultrasound. In my dream world, it will show that the cancer is receding rapidly and the pill is working and we have found the cure for cancer. But only for me. Because remember: Every cancer is different.

I’m not holding my breath, but dreams are dreams. Might as well have them. Since I’m dreaming, I’d also like a unicorn that shoots rainbows and makes everyone love each other all the time no matter what their differences are. That would be a really cool world to live in.

Other times I’m scared. Holy crap scared. But about my surgery. What if they damage the muscles in my chest and arms so much that I can’t work? What if I decide to do reconstruction and they give me a uniboob? It’s more the muscle stuff. I trust the doctors and surgeons I’m working with to not give me a uniboob. Unless I ask for one, in which case they will do their best to make me one.

I don’t think I’ll ask for a uniboob. Seems like it would be tough to find clothes that fit.

Now, I’d like us all to pretend something. Let’s all pretend that the unicorn is real and has escaped and is wreaking havoc on the world. And by wreaking havoc, I mean it’s running around spouting rainbows and causing everyone to get along and treat each other with respect and love. Not the stabby unicorn havoc. The happy, gentle unicorn.

No, I’m not on any drugs except talazoparib. I can almost say “talazoparib” now, by the way. I’m pretty proud of myself.

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Appointment Week

Yes. This was: Appointment Week.

Monday: Gave them all of my blood. Five or six vials, I think. I didn’t have much left when they were done.

Tuesday: Oncology appointment where we got to look at some numbers from the blood work, but not all because some weren’t back  yet, and my oncologist got to say, “Still can’t feel anything.” Exciting. My RBC was a little low, but otherwise it appears I’m doing okay. That could be why I’m feeling a little winded walking, though. Since red blood cells bring this thing called “oxygen” around your body. My blood pressure was also a little low. I’m guessing because I don’t have any blood left after they stole it all on Monday. And my weight was indicated as ‘LOW’ on my paperwork. I think I just wore lighter shoes. I want to lose weight, but I’m trying not to.

Wednesday: Ultrasound. Or as I’m going to refer to it, the boob goo appointment. At least the goo was warm! Today my biggest tumor on the right side measured…

<drumroll>

.2cm less!!! Woohoo!! Happy dance.

 Meaning: It appears my treatment is working!! Yessss…

But my left side was, of course, like, “Hold my beer.” My DCIS appears to have grown. The doctor that I talked to today believes it might be scar tissue from my biopsy where they shoved a 9-gauge needle up in there to say, “Yep. There’s something there.” It didn’t hurt when they did it. But the external bruising on that side took weeks to recover from. So, I am hopeful that it is just scar tissue and not my left tata trying some one upmanship.

Overall, I’d say a successful day. I’ll be waiting to hear if they want additional tests on the left or just let it do its thing until month four (November) when I have my next ultrasound. I am hoping for more tests, but if I have learned anything in this process, it’s that it’s really easier to expect the worst, hope for the best, and the result will probably be somewhere in the middle.

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9/11/01

Today is 9/11/19. I am writing this on a plane as I take a flight for work. Yes, I’m still traveling. And, yes, I wore a mask on the plane. One person took the risk of the aisle seat on my SW flight and they were rewarded with no one wanting to sit next to the creepy chick wearing a black face mask in the window seat.Amanda wearing mask

I’m hoping that just the fact I’m on a plane on 9/11 doesn’t cause too much anxiety. I find it’s the safest day to fly, really, and I have to work tomorrow. We can’t let the past shape our future or how we live our lives by avoiding ‘what if’ things. We need to remember, learn, and live. Nothing is more powerful. If we stop living, then they’ve accomplished what they wanted to do on that terrible day 18 years ago.

18 years. Kids who were not even born yet will be graduating high school this year. For those of us who lived through it, we all remember where we were. I was in the band office at The University of Iowa when I found out. While it was actually happening I was in quintet rehearsal. I found out after. I kept going to class that day. Our music history professor pretended nothing was wrong and we learned about ancient music. My American politics professor excused us shortly after class began. I think he was struggling. Makes sense. Another class I had, I can’t remember the name of it, but it was political science as well, we just had small group classes with our teaching assistants (TAs). No lecture that day. But in that class, we talked about the timing.

The first plane hit. The first responders got there and started working. The news crews got there and started filming. Then the second plane hit. 17 minutes later, allowing the world to see. And then the Pentagon was hit 34 minutes after that. This was no accident. This was planned to perfection. Flight 93 bucked the trend, going down in Pennsylvania. Ruining the last bit of the plan. Thank you to the brave people on board. If they’d had more time, they could have landed that plane safely. I learned this while listening to the coroner who identified all the passengers on the plane talk about the work they did. There was a pilot on board. There were medical professionals. They just needed more time. That breaks my heart.

The coroner was very interesting and proud of the work they’d done. With many of the people on the flight, there was not much left to identify. But they did it. Every last ticketed passenger on the flight was identified. The same day I was listening to the coroner at the Pennsylvania Court Reporters Convention in Seven Springs, Pennsylvania, I also got to listen to someone who was working in the Pittsburgh Air Traffic Control Center on 9/11. It was the highest point between Flights 93’s point of origin Newark, New Jersey – final destination was supposed to be San Francisco, California -- before it was turned around and headed toward Washington, DC, the presumed target of the plane. They had to land all the planes and then get out. That was a very interesting convention, to say the least.

The first time I went to New York City (NYC) was in March of 2001. The Twin Towers still stood, and we were there for the men’s NCAA basketball tournament. By ‘we’ I mean the University of Iowa Pep Band. Go Hawks! We had won our first game and moved on to the Sweet Sixteen, so while the basketball team had to do the practicing stuff and things, we had a free day. We went into the city from our hotel. It was that or the strip club down the street. We went and saw things. Went to Ellis Island and the Statue of Liberty. I need to find the pictures I took. This was pre-digital, so they’re in my closet I’m sure. The Twin Towers of the World Trade Center were very impressive. They stood so tall over the city.

Then 9/11 happened. The world changed. I decided to go study abroad in Wales. That’s in the United Kingdom. My parents – especially my mom – were not that excited about it, but I’ve got an independent streak. I flew to Wales in January 2002. Flying had changed. I got wanded on my way through security. That was different. The first bit of time I was there, everyone was very upset by what had happened to us. By the time I left there were peaceful protests in the streets of London since we had decided to take military action in the Middle East. Iraq. Afghanistan. I had studied this area of the world while I was at The University of Swansea, Wales, and my professor from this class was from Iran. I did not agree with the military action taken. Not because of beliefs or anything, but because of my political science education. I can’t change the past. I just wish that so many innocent people didn’t have to die. That’s what war does, though.

The next few times I went to NYC was for work. My most recent trip was in March of 2018. I finally had some free time and took myself to the 9/11 Memorial. It’s very humbling. It’s huge, yet feels intimate. I didn’t have time to go the museum, and I don’t think I’m ready yet. Maybe someday. I went to the top of One World Trade. I didn’t stay long. I don’t think I can ever work in a tall building, the building swaying in the wind does not agree with me, but if you would like unrivaled views of NYC, that’s the place to go.

White rose to represent a birthday of a victim of 9/11NYC from One World Trade

 

 

 

 

 

 

One World TradeI never have officially used the education in political science that I received. I do use it quite a lot in day-to-day life since so much of life is just politics. Although, admittedly, I play the game my own way. I’m not one to really follow any rules that are not 100% based in fact.

 

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Understanding the Comprehensive Metabolic Panel

Ah. The Comprehensive Metabolic Panel. Or the Comp Metabolic Panel. Or the CMP.

 

I knew that if you had managed to make it through the CBC post, you’d be waiting with bated breath for this one. I hate to disappoint, so here we go!

 

What is it? Basically it is a measure of your metabolism. When most people think metabolism, they think of it speeding up or slowing down, but for a doctor, it’s more a look at how your patient is functioning. Are their kidneys and liver okay? Are they having any sort of imbalances in their system? Is their blood sugar normal?

 

The components of the CMP include:

 

Total Protein - Means: This measures all the proteins in serum. Simply put, serum is what is left after your blood clots. It’s not a blood cell. - Range: 6.4-8.9

 

Albumin - Means: A wee protein that’s made in the liver. - Range: 3.5-5.7

 

Globulin - Means: Proteins that are made in the liver. They are pretty important. They are involved in the functioning of the liver, but also are important in blood clotting and fighting infection. The scariest thing during cancer treatment? Infections. - Range - 23-35

 

A/G Ratio - Albumin/Globulin Ratio. Means: The ratio of albumin to globulin. It’s helping to track liver or kidney stuff.

 

ALT - Stands for: Alanine Aminotrans. - Means: An enzyme found in the liver and kidneys. This is used to test for liver damage. The worst possible side effect seen on my clinical trial was someone who died from liver failure, although it is uncertain if the drug caused it or if there was some underlying cause. Anyway, I’m not drinking while on it. No problem! - Range - 7-52

 

AST - Stands for: Aspartate Aminotransferase. - Means: An enzyme in the heart and liver. Also good for detecting liver damage. - Range: 13-39

 

Alkaline Phosphatase - Means: Another one of those liver enzymes. If it’s high, though, it can be liver function issues *or* something is up with your bones. This is important because one of the rare side effects is acute myeloid leukemia. This is a cancer of the blood and bone marrow. Want to avoid that, methinks. - Range - 34-104

 

Total Bilirubin - Means: This is a waste product created by the liver as it breaks down - and recycles! - cells. Good to know our bodies are environmentally conscious. - Range - 0.3-1.0

 

Urea Nitrogen - Means: This is a measurement of nitrogen in the blood that comes from urea, a waste product. I’m often impressed by the naming of these things. How creative! Anyway, this is testing for damage to the liver. We want it to be normal. - Range: 7-25

 

Creatinine - Means: - A waste product from muscles. The kidneys filter it, so it helps measure kidney function. Range: 0.6-1.3

 

BUN/Creatinine Ratio - Stands for: Blood Urea Nitrogen/Creatinine Ratio - Means: The ratio  BUN to creatinine in the blood. Yep. If it’s too high, it could mean dehydration or congestive heart failure. These things are bad. - Range: 8.0-20.0

 

Glucose - Means: Your body’s energy source. This should be pretty stable. Not too high. Not too low. Just right! - Range: 70-105

 

Sodium - Means: It’s an electrolyte that helps balance water inside and around cells. Too much or too little is bad. - Range: 136-145

 

Potassium - Means: It’s a mineral! It helps your body keep the fluid balance spot on while also helping with contracting muscles and nerve signalling. It’s important because it helps you retain the right amount of water and can keep your blood pressure down. Get enough and you can avoid exciting things like strokes and kidney stones! Range: 3.5-5.1

 

Chloride - Means: It’s an electrolyte that helps with regulation of fluid in the body. - Range: 98-107

 

Carbon Dioxide - Means: It’s a byproduct of, oh, breathing. It does help maintain balance in your body. Too much is bad. Too little and you’re probably in a higher altitude or at an oxygen bar. - Range: 21.0-31.0

 

Calcium - Means: An important mineral. You know? Drink your milk! I don’t drink milk, but you can get calcium from other sources, such as cheese! It’s important for, oh, muscles, heart (hint: the heart is a muscle), bones. That kind of thing. - Range: 8.6-10.3

 

GFR Estimate - Stands for: Glomerular Filtration Rate. Means: An estimate of your kidney function. Pretty important. - Range: 90-120

Note: This test must be adjusted for race. If a person is African-American, the estimated GFR must be multiplied by a factor of 1.21 per a note on my chart. Mine is not adjusted as I am near-translucent white, especially in the winter.

 

My AST was low on the most recent test, and before that, my ALT as well. But overall everything has been in the normal range, so that is good. Please do keep in mind that depending on which doctor you are seeing, the ranges I’ve outlined above may be slightly different. My body doesn’t appear to know that it’s got cancer. That is why my type of cancer could have been an even worse problem if I had not been getting tests regularly due to family history. If it had been evident through physical examination or showing up in blood tests, I’d probably be stage 3 or later. Stage 3 is where the cancer has started to metastasize, or spread, throughout the body.

 

See? I. Am. Lucky.

Filed under: Medical Definitions

Woohoo!! We Just Bought a New Car!!

A blue Lotus sports car.
Isn't it great??

Kidding. Although, that is one of my dream cars, so feel free to buy it for me!

 

That’s just the sound of the 11 month medical payment plan at $282.32 starting. My favorite part of setting up a payment plan? Other than the fact that it won’t be paid off until after all of my treatment for my tatas is done? It was when I looked at it on my online portal and it said, “Payment Plan 1” next to it. Hint: I’ll probably need another payment plan next spring after my surgery. Fun!

 

Good news about a payment plan? It’s 1 cent off from the actual payment, so as long as I pay on time, we good. Also, that it exists. I do wonder, though, how many people just don’t pay it or can’t afford to pay it. I’m thinking back to my mortgage days and all the medical collections all over peoples’ credit reports. Ah, memories.

 

Plan is to pay it. I still have $1,815.37 left from what my friends raised for me which I may or may not use for the payment plans, or will hold until next spring with the next round of bills.

The front of a car with detail that makes it look like a face is coming out of it.

Because guess what??? I’ve hit my deductible!! All $6,950 of it. Congratulations, I guess? Next goal - this is a stretch goal, mind you - my out-of-pocket maximum weighing in at $7,900. I’m currently at $7,203.63. I may not hit this one - don’t be too upset! - because of my clinical trial. All of my drugs and most of my doctor appointments from here until the end of treatment with talazoparib are paid for by the drug company running the trial.

 

Unless they decide to discontinue the trial and kick me off. I’m assuming they won’t, but it could happen.

 

Goals for the rest of the year:

 

  1. Kick cancer’s ass until my health resets on January 1, 2020, at which time I will, apparently have a health reset since that’s when my insurance resets. I’m not hopeful that the reset will actually happen, but I’ll do my best.
  2. Husband can’t get sick! If he does, we will owe another $6950 deductible and $7900 out of pocket max. Also, Edie has advised us that she only cares about hunting bunnies and Arthur’s plan, if we are both sick, is to just stare at us with really, really wet eyes because that is, in his opinion, the best way to get treats and/or snuggle-cuddles.
  3. Try to stay as healthy as I am currently. Fingers crossed.
  4. Start working on the FU Cancer Foundation. I have no idea how to run a foundation and do not plan to once it’s up and running. I’d rather caption. But I think it’s important to help people get back into some sort of normalcy after all this cancer crap. And it stands for Follow-Up. Get your mind out of the gutter.

    A gray Honda Pilot and a white Honda Fit.
    Our actual cars. 2012 Pilot and 2009 Fit. The Fit is for sale!
  5. Get categories put on here so it’s easier to find something. Right now it’s entirely stream of consciousness. This is the 34th blog post I’ve started, by the way. I have a few I haven’t published yet.
  6. Get the bill/time thingy I’ve made up on here. Update is that we’ve spent 13 hours in the car, 16.75 hours in doctors offices, and drove 385 miles. Also, a lot of that was when we were going downtown, and we will start doing that more again in November. Oh! And my insurance has charged $58,904 and given themselves a discount of $40,974. Keeping track of this stuff is so fun, it makes my head hurt. I also need to reconcile my stuff - my out-of-pocket numbers don’t match theirs. Hm.
  7. Have fun. Enjoy my tatas during their last hurrah. Except the right one is kind of sore. I’m hoping this just means the drugs are attacking the tumor and kicking its ass.

Ciao!

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I Feel…

Mostly okay. I have been taking Talazoparib every day for almost two weeks now. I had some nausea, I was tired, but mostly I just feel okay. I will absolutely take that. I know it’s still early, but I will happily take the feeling of ‘fine’ over anything else that could be happening.

 

I’m doing everything I can to eat mostly good. Eat my fruits and veggies. Protein. Whole grains. Yes, I’ve added ice cream and chocolate, but I feel like extra calories are okay at the moment. I’m currently down about 1.5 lbs. I’m hoping that’s just because I’m eating mostly better and assuming that is all it is because that’s such a small number.

 

Next appointment is Tuesday morning. Just a checkup and blood work. I’ll take a look at those numbers when they show up on my portal so I can see how I am doing compared to last month. After that the next appointment is my one month checkup and an ultrasound. My hope is that we will already see progress on tumor shrinkage. Not going to hold my breath, but that is why we are doing this treatment. To see progress.

 

Most breast cancers are treated with surgery first and then chemotherapy and perhaps also radiation. This is called adjuvant therapy. I’ve never been one to follow the easy path, of course. Because of my cancer being triple negative, studies have shown that if the tumor is shrunk first, prior to surgery, there are better outcomes. This is neoadjuvant therapy. This is due in part to the aggressive nature of my cancer. By showing that we can treat it with these therapies, we have something to fall back on if it decides to randomly appear elsewhere at a later date.

 

The particular PARP (poly ADP - adenosine diphosphate - ribose polymerase) inhibitor I’m on is approved for metastatic cancers of this type. Metastatic meaning it’s spread beyond the breast and lymph nodes. I’m in one of the initial clinical trials to see how well it works on lower stage cancers. Should work. I’m going to say it’s working unless proven wrong by medical tests.

Amanda with short hair.
This was last night. I have basically stopped brushing my hair because. I don't need to! Ha!

Amanda with long hair.
It used to be much longer.

 

I did chop my hair. I used to have really long hair. Just over a year ago I chopped it to my shoulders. It was easier to care for when traveling. Now it’s chopped the shortest it’s been probably since I was a baby. I actually like it a lot. It’s very easy to take care of, and I honestly don’t have to brush it. Even if it doesn’t decide to fall out (side effects, yay!) I think I’ll keep it short through my treatment and surgery. So much easier to take care of.

 

That’s it for now. Just hanging out, waiting for the scary boom storm to pass to take my doggos for a walk.

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