Month: December 2019

Happy New Year!

Well, almost. Today is still 2019. Tomorrow my health will reset because my insurance is resetting. Right?

 

Or not. But in the meantime, let’s do a year in review! By the numbers (Dates are numbers, k?):

 

5/30/19 - The beginning of the whole ‘cancer’ thing due to a mammogram and ultrasound that were ‘probably just a cyst, but we’d better check.’

 

6/6/19 - The day I had the tests that would change the trajectory of the year. I learned the diagnosis a few days later. I cried.

Amanda's face superimposed on a dark-haired person holding a crystal ball.
That time I read the future in a crystal ball. Totally missed the whole 'cancer' thing!

 

7/3/19 - Attacked with the 9 gauge needle + other tests.

 

8/20/19 - Beginning of treatment. Delayed due to tests, clinical trial starting, and… vacation/work trip.

 

28 - Number of days I visited medical offices of various kinds throughout 2019. Some days were up to three appointments/tests.

 

33 - Number of hours spent in doctors offices.

 

22 - Number of hours spent in the car getting to/from doctors offices. My oncologist is super close, but you go there a lot.

 

~$7,000-$10,000 - Approximate income loss due to cancer.

 

$6900 - Deductible.

 

$6700 - Money raised by friends/family to help pay my deductible. I honestly wouldn’t be where I am today without this help. Thank you all!!

 

$1000 - Additional ‘out of pocket’ above deductible that I’ve paid out - what does this even mean?? Insurance is so confusing.

 

$4865 - Insurance premiums June-December 2019 for my husband and I.

 

~$61,000 - Cost of care through the start of my clinical trial - does not include December appointments. Those bills should be arriving soon. I don’t see the cost of the trial, but I did a search and it showed the pills I’m taking cost upwards of $5,000/month. Ouch.

 

~$43,000 - Insurance ‘discounts’ - what is this? Write Offs? I don’t know. But it leads to the next number…

 

~$7600 - Approximate amount insurance company paid for my care.

 

~$16,240 - Approximate out of pocket + premiums for the entire year. So, if I’d just paid out of pocket for the year, I would have paid a little less for this treatment than what I actually paid if I were granted the discounts given to the insurance company. Good thing I did all those chiropractor appointments and husband had some physical therapy!

 

$754.44 - New insurance premium per month for 2020. (x12 = $9053.28) - It only went up $59/month! Score.

Edie Beagle and Arthur chi-mix standing on their back legs begging for treats.
Auditioning for Santa's sleigh.

 

$2800 - New deductible. I think. I was able to work more than I thought I’d be able to, so I already have this saved/ready to go plus enough to cover the bills for a month while I’m recovering. And I’ll keep working until surgery. I’d keep working through surgery, but they put you to sleep for it.

 

1 - Number of dogs adopted in 2019. Let’s see if we can beat that in 2020! (I’m sure my proofreader/husband will have something to say on this subject… hahahaha)

 

I wish you and yours a wonderful, safe and happy new year. May your health reset on January 1 if needed as your insurance does if you’re in the US, and may everyone whose health doesn’t reset get better quickly and keep partying like it’s 1999.

 

Cheers!

Filed under: Uncategorized

All I Want for Christmas…

Is a pelvic ultrasound! Said no one ever. But that’s where I found myself at 7:30am on this Christmas Eve. Oh, what fun! She told me what was going to happen. First, ultrasound of the upper tummy and kidneys. Okay! No problem. Then… the other one. It makes sense that to get the best pictures, you should get close to what you’re looking at. Closest point to view the uterus would be the vagina.

 

It was a little uncomfortable, but nothing like having a uterine biopsy. Would I recommend it for the casual ultrasound user? Absolutely not! But I think they got the pictures they needed. I still have a cyst on my left ovary. That was seen on my PET scan last July. I hope they post the report today because I’m weird and I want to read it. The radiologist didn’t come in to talk to me, so I suppose that’s a good thing.

A patio with a fire pit in the middle with a roaring fire, blue sky in the background.
It was warm enough to have a fire yesterday! So, we did.

 

Side note: I did not blog last week. I was busy! Drag Queen Bingo to support the local Humane Society - so much fun! - sang karaoke downtown (hint: I did not win - but I had fun!), lunch with a friend, and the last gasp of city council meetings to caption. I was very busy. This week? Less so. Thankfully.

 

Right now I’m cleaning the house. Well, I’m blogging. But I’m almost done dusting. We will go to our neighbors’ house for dinner with their family tonight. We do not have any immediate family nearby - the closest is several hours drive away - so we have let them adopt us into their family. A few more mouths to feed? No problem! They’re wonderful and we are thankful for them and all of our lovely neighbors.

 

On Christmas Day, I'm going to do something crazy! I’m going to drink a mimosa. I had this cleared by my oncologist by saying, “I’m going to drink a mimosa on Christmas.” The oncologist said, “That’s fine.” All of my liver numbers and things are doing just fine, but I’ve been avoiding alcohol due to that one person in the initial trial for my drug who died of, oh, liver failure. Better safe than sorry.

 

Other than being traumatized by an ultrasound wand this morning, I’m doing well. My day starts with loratadine and sublingual B12 followed by breakfast. Hopefully at or during breakfast I remember to take my magnesium oxide and psyllium husk (fiber). Then I’m done until 6pm ET when I take my talazoparib. Fingers crossed for more shrinkage evidence on January 6th. That’s my next mammogram/ultrasound. That’s a busy week. I have five appointments that week: blood work, mammo/ultrasound (that’s two for one!), oncology for the end of round five, a dentist appointment - assuming my numbers are okay from my blood work - and I’ll meet with the plastic surgeon that Friday. I’ll learn more about the DIEP flap surgery.

Arthur chi-mis asleep on his back with his front legs tucked up against him. He's under blankets.
Relax...

 

I’m struggling with whether to do reconstruction or not. My initial thought is chop them off and run away and combine that with removal of the full baby production system. Or, if I go the reconstruction route, the baby system will be removed at a later date. But I can’t wait too long. Apparently my ovaries are ticking time bombs now that I’m over 35. Yay, genetics.

 

I promise to spend Christmas Day focused on family and friends. To enjoy the moment. I’ll really enjoy that mimosa! Promise.

 

Happy Holidays to you all!

Filed under: Uncategorized

Fourth Round Completed

Thankfully, I only have to go six rounds. So, well past the halfway point! This week was blood work, as usual - CBC, complete metabolic panel, magnesium - I almost passed. My magnesium is back to good. My oncologist said to start taking magnesium after it came in low last round. I have done so religiously. Except yesterday, of course, when I completely forgot. With that I also took psyllium husk. That’s fiber. Magnesium oxide causes one side effect, the easiest way to counter it is… fiber. So far, so good.

 

We had our monthly check where we don’t feel anything. Still a good thing - means nothing is growing out of control or moving where it’s not supposed to go. I gained weight - oops. And my blood pressure is back up where it was before. No wonder I feel more normal. Still tired, but more normal because my blood pressure isn’t crazy low. Of course, that’s probably a side effect of something and next month it’ll be hypertension high or something. That’s how I roll.

 

I requested additional tests today. My RBC, Hgb and hematocrit are all low, but my MCV and MCH are high. In my mind, this means that I’m having fewer red blood cells and the ones that are left are getting enormous. I’m sure that’s medically sound. Anyway, my Google searches are legendary at all offices I attend, I’m sure, so this led me to B12 and folate. These being low can also make the MCV and MCH go high.

 

Sidetrack: I have another genetic mutation. Conclusion: I”m a mutant.

 

Or not. Anyway, about 40% of the population in the United States probably has the methylenetetrahydrofolate reductase, or MTHFR, mutation. Everyone has this gene, it’s just whether it’s mutated or not. Anyway, my mutant variation can lead to deficiencies in folate, B6 and B12. That’s a very simplified version, but you can feel free to read all about this gene on riveting websites such as nih.gov (National Institutes of Health).

 

Back on track. Because of my MTHFR mutation, I asked my B12 and folate to be tested as well. And also because I just love getting stuck with needles two days in a row. Who doesn’t?

 

I got a call from my oncologists office today. I am to take B12 as my levels are normal to low. I’m taking B12 as I write this. How crazy is that? I’m using a sublingual B12 which may or may not absorb into my system better. Although now that I’m doing more research, I need to make sure mine don’t contain sugar substitutes. Side effects: gastrointestinal symptoms. Pass.

 

I’m also seeing that my LDH levels are low. Lactic dehydrogenase. Related to how your body breaks down sugar as energy for cells, particularly the muscles. Of which I currently have none. Also, it appears that low LDH is also related to some genetic mutations. I probably have those too because, hey! Why not?

 

I will try to keep providing updates throughout the holiday season, but hopefully my only remaining cancer-related appointment this year is the Christmas pelvic ultrasound on December 24th. That’s only kind of cancer-related, really, though. It’s more BRCA1 mutation-related.

 

This is getting complicated. Cheers!

Filed under: Uncategorized

Untitled Post

I can’t think of what to call this post. I was trying to come up with some clever ode to my reproductive system. I’ve got nothin’.

 

This week was, indeed, the discussion of what to do with all that reproductive stuff. Because of my BRCA1 gene, I’m at a higher risk for ovarian cancer too. FUN. Most women have a very low chance of developing ovarian cancer in their lifetimes - around 1%. Mostly that would be over age 70. Me? Around a 40% chance. It increases as I get older, but basically over 35 with BRCA1 it’s suggested that maybe the ovaries n’at should just go.

 

Solution: Later, ovaries and fallopian tubes!

 

Wait. Fallopian tubes too? I heard from a friend earlier in this process that they’re discovering many ovarian cancers actually form in the fallopian tubes - the things that connect the ovaries to the uterus - and then travel to the ovaries. So, they can go.

 

And while we’re in there, let’s just pop out the uterus too. I might have a slightly higher chance than the rest of the population when it comes to uterine cancer, or not. It’s not clear yet. But why risk it?

 

So, yes. I’m going to have all those pieces taken out. They’re small, but as I was sitting in the waiting room for a really long time because the office was running behind, I went online and read up on how the procedure is done. It’s fascinating, and delicate, and there’s a ligament that made me giggle because, hey, gotta find humor in some stuff: infundibulopelvic ligament. Anyway, they don’t want to damage anything, like, say, your bladder, while they are performing the surgery. Punctured bladder = bad.

 

It appears that this procedure is higher risk on lean people. I do not currently have that problem.

 

Summing up: No babies. That’s fine. I’ve not had any, and I’ve been perfectly content as a dog mum for the last five years. If I ever change my mind, I will adopt. Probably one that’s potty trained already and is having a harder time finding a home. That’s how I roll.

 

The surgeon who is going to do this surgery for me asked my dogs’ names, and I theirs, so I’m glad we are on the same page.

 

If you’re reading this and freaking out about ovarian cancer now, please don’t. It is *very* rare. And only one in 500 women in the United States has a BRCA1 or BRCA2 mutation. Your chances of having this are very, very low.

 

I’m special. That’s my story, and I’m sticking to it!

 

In other news: Pelvic ultrasound requested by surgeon. Scheduled. Date: December 24th. Christmas Eve.

 

Finally, I’m going to have an ultrasound on a ‘normal’ female part! I’ve had them on my ankle, knee and tatas. Finally, the area most women get an ultrasound on!

Filed under: Uncategorized

Happy December!

It snowed today. Just a little snow. Just enough to get Christmas music playing in the house. Now it’s gone. End scene.

 

Let’s go back in time. We spent Thanksgiving with friends who are basically family, and the Saturday after was a Friendsgiving with much family and new friends. It was, overall, the most sober holiday I’ve had in awhile. One friend can’t drink because of illness. One family member stopped drinking, and I’m so, so proud of them. Me? I can’t drink because, well, cancer.

 

That’s fine. I really didn’t miss it. I spent time playing some games with adults and children over the holidays. We also watched the game where my Iowa Hawkeyes barely beat Nebraska. Oops. Well, a win is a win. I’ll take it.

Arthur chi-mix and Edie beagle cuddling together in the back seat of the car.
Mum, I think brother is high...

 

The drive to get where we were going was about 4 hours. We took it easy. We did end up drugging Arthur with antiemetics - stuff to keep you from getting nausea/vomiting - because of his past history with car rides. But overall it was a smooth commute. Even if poor Arthur spent the entire ride in one spot and staring at us. It was a little creepy. Not gonna lie.

 

The way back? Not so smooth. It was about a 4.5 hour drive that took us 8 hours. We stopped for gas in a neighboring state where it’s a little cheaper at around an hour into our drive, and then we hit the traffic. We didn’t move much for the next few hours. I felt bad because I hadn’t let the doggos go for a wee at the last stop, hoping to get home early in the afternoon to attend an event.

 

What was the slowdown?

 

Per the traffic report that was sent to me by a family member, it was 58 cars involved in 29 separate collisions along the interstate. Ouch. I am only going to ‘ouch’ this because per the reports no one sustained life-threatening injuries. No one died. I’m glad.

 

As we rode on the shoulder going past the biggest pileup that included a semi - husband noting, “Someone isn’t going to get their tires,” as we passed the semi - all of the vehicles did what they were supposed to. Most were undriveable, but they had collapsed in all the right places, saving the precious cargo inside. Only 10 people went to the hospital per the report I have. Modern technology is amazing.

Arthur and Edie asleep on the back seat.
I guess we live in the car now.

 

So is modern medicine. If was living a hundred years ago, I might not even have made it this far due to childhood illness. If I did make it this far, there were no treatments that could save me. Instead, I’m here. I know that there is something wrong with me, even though it’s not manifesting symptoms that are obvious to anyone yet. I’m on the cutting edge of treatments for cancer related to a gene that was discovered in 1994 by Mary-Claire King, PhD, at the University of Washington. You go, girl.

 

BRCA2 was discovered in 1995 and named the same thing but having to add a number because these people have better things to do than name stuff. Darn it.

 

So, I guess this post is an ode to modernity. Modern technology that saved all those people in the wreck. Although, keeping a safe distance and not speeding when it’s foggy and ice is forming on the signs can assist too. And modern medicine, which is helping me through this icky time. And modern mental health practices. The more I go down the rabbit hole of my reconstruction vs. flat option, the more I realize I should probably start talking to someone about this choice. It’s mine to make, and I want to make the right choice for me, but either way I am going to be losing a part of my body.

 

It’s weird to think about.

Filed under: Uncategorized