Month: August 2019

A Mastectomy…

Is not a boob job.

 

It’s okay if you did not know this. I’ve heard this from multiple people in different walks of life. This is the opportunity to get perky boobs!  Woohoo! Why not get implants? They’ll be perky and beautiful!

 

Yes. They can be perky and beautiful, but it’s a much different process. First, I never wanted this. I was ready to let the ladies do their thing as I aged. They were complying.

 

Second, a mastectomy is total removal of all of the breast tissue. All of it. There is nothing left to build on as you would with an elective implant process, because it’s just gone. Often, that includes all the skin as well. There are ‘skin-sparing’ options now, but again, they have nothing to build on with the tissue.

 

Why do they remove all of it?

 

When you elect for a mastectomy, that’s the agreement. There are other options available to some patients such as a lumpectomy. A lumpectomy would remove the tumor and tissue around it, known as the margin. They would ‘test the margin’ to see if any cancer had spread. If not, great! Your lumpectomy is complete. If it has spread, they’ll keep removing the tissue until they get it all.

 

I think waking up from a lumpectomy and realizing you’d had to instead have a mastectomy would be the worst. At least I’m able to wrap my head around what is going to happen to me and have time to process it.

 

So, what are the options for a mastectomy?

 

No reconstruction: Remove all the tissue and the skin - including the nipples - and ‘go flat.’ This option is more common than you think. You may not notice, especially if someone had a smaller chest to begin with or it’s your first meeting. Or they might be using prosthetics. Removable fake tatas. This is by far the easiest recovery from this surgery. Amputate the breasts, move on with your life after you heal. Well, as much as any cancer survivor can move on. There will still be screenings and tests for forever. Am I considering this option? Absolutely.

 

Reconstruction: This can happen during, immediately after or even years after a mastectomy. Let’s look at some reconstruction options, shall we?

 

Reconstruction with implants: If they are able to save some of the skin and nipples, great! There are times they cannot save the skin. Example: When the tumor is too close to the skin. This is an ‘easier’ surgery than with the next reconstruction option I’ll go over. But it is also more prone to issues in the future. Just recently there was a recall on breast implants. They’re causing implant-associated anaplastic large cell lymphoma in some patients. That’s cancer. And not just patients who had them put in after treatment for cancer, but in healthy women.

 

Back to information: Implants can be filled with saline or water, or a combination of the two. Or apparently vegetable oil? This information is coming from BreastCancer.org - I trust this site. But vegetable oil? Really??

 

Anyway. If you get implants and they’ve had to remove all the skin and stuff, guess what? You get to stretch your skin back out! This takes time and involves ‘expanders’ - they’re like balloons you put under the skin and they fill them over time until they stretch the skin to the correct size.

 

Sounds fun? I will not go this route.

 

Reconstruction with ‘flap’ surgery: Autologous reconstruction. Basically, they take fat from somewhere on your body - most commonly the belly, but can also be the back, derriere or inner thighs - and use this to make you new tatas. Sounds great! Except… it is a longer recovery time than either going flat or implants because, well, you have giant wounds to recover from in various areas now.

 

The good? Unlike implants, there does not appear to be any additional maintenance over time. And it’s your own tissue.

 

The bad? The recovery time, of course. But also that this surgery is not available everywhere to everyone. It requires a skilled plastic surgeon. I do have this as an option because of where I live. I’ll think about it.

 

I’ll go into more detail of different types of flap surgeries sometime, but for now let’s end today’s lesson. If you take away nothing else from this, please accept that while I’m happy for you getting your boob job, it’s nothing compared to a bilateral mastectomy.

 

Homework: Google mastectomy scars.

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I’m Tired

Pretty sure it’s the drugs. It’s like… a tired I can push through, but know I shouldn’t, but do anyway because the weather is too perfect. And now my office is almost useable again. It got a little crazy between being gone for 10 days and having just kind of thrown stuff in it before and after we got back. I can see my desk now. Improvement.

 

It’s also like a haze. I can seem perfectly normal and interact with people just fine, but I might be elsewhere. I don’t think anyone has noticed yet. Shhhh… don’t tell. Ha, ha.

 

I still need to wash the dogs today - they’ll love that* - but I imagine I’ll just sit in the shower and do it. Changing elevations too fast makes me dizzy. I learned this while we were working in the garden today. Yep.

 

I want to write about our fun time in San Diego. But I’m tired. It was our first real vacation in almost two years. A lot of that was due to our old dog Spencer. He hated everyone except us and Edie, so it was hard to leave him with anyone. Plus, he was suffering from dementia at the end of his life. It was horrible. 

 

That time made me tired too. I think 2019 is just going to be a tired year for me maybe?

 

Anyway, I will write about San Diego and Denver. I sent husband home and I continued to Denver. I’m kind of glad for non-refundable hotel rooms purchased BC. It was a needed respite from this weird world I’m finding myself in now.

 

I’m tired. That’s all I’m going to write today.

 

*Sarcasm in use.

 

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And So It Begins

Yesterday I took my first 1 milligram pill of talazoparib. I seriously have to look up how to spell it every time I have to write it somewhere. I think I don’t really want to think about it.

I took it at 7pm. I will take it at 7pm every night for six months as long as I behave and tolerate it well. Then I went to bed after a bit and got up very early to go downtown and work. Work helps. Doing fun stuff helps. But there’s always this thing in the back of your mind: I have cancer. I try not to go down the ‘why me!?’ path. That’s a slippery slope. Better people than I have had cancer, worse people. It doesn’t really discriminate. You can’t judge people based on them having a cancer diagnosis. If you do, I would like you to stop it. Now.

If you don’t, I hope you get cancer.

Okay. That is mean. But so is thinking people ‘deserved’ to get cancer. No one has said this to me, but I’ve seen others have to deal with this. It’s crap. Grow some empathy, please. And for those who think this kind of thing never happens, don’t be naïve. People can be terrible.

Okay. Done with that.

Here’s a quick rundown of my last few days. Monday I went for blood work. Again. I think I have a pint or so left. I had to go to two different places because they forgot to run a pregnancy test on me – I can’t be pregnant for the trial since cancer drugs + pregnancy = bad – but didn’t realize they needed another one. I’d had one a few weeks ago before we left for vacation. I’ll write about vacation soon.

Good news! I’m not pregnant.

Anyway, after all that fun of driving to two different places and paying to park at one – I’m kind of pissed off that so many hospitals around here make people pay for parking. Really?? – I was done for the day. We hung out with our neighbors in the evening and talked.

Tuesday at 10am I went in and got my pills. My oncologist did an examination because the trial says she has to. She felt nothing, which is what everyone has felt on me so far, and then I was handed the pills and told I could take them whenever was the best time for me, but it has to be at the same time every day. I was supposed to get a tracking thingy at that time, but it wasn’t working, so I had to go back later and pick it up. It’s a phone. All I can do on it is track stuff. Yes. I took my pill. No. I didn’t vomit (yet).

I left it at home for today. If I happen to get sick, I’ll make a note of it and let the clinical trial phone brick thingy know later. I’m not going to carry it around if I don’t have to.

And now I’m at work. I had my husband drive me in and he’ll pick me up later. This is a ‘just in case’ move because who knows how I will feel. I just started. I feel fine so far today. But I’ve only had one pill. It’s not built up in my system yet. I’m tired, but that’s for a different reason.

The fun story of why I’m tired: We have a beagle. She’s scared of thunderstorms. Last night was one of the bigger thunderstorms we’ve had since we’ve lived here and she kept trying to get into bed, but only succeeded in putting her paws on the side of the bed and making the entire bed vibrate. Eventually I got Edie the beagle to lay down next to Arthur the Chihuahua mutt as the storm was almost past us and she stopped making the bed vibrate.

Then we all slept until the alarms started going off at 5:30am.

And now I’m here working. Cheers!

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Understanding the CBC

If you or someone you know has ever had cancer or any other illness that requires careful monitoring, you’re probably thinking: How do I have any blood left???

Purple and white daisies and some yellow marigolds all with dew on them.
Daisy family photo

They take blood when you first go in, and then they just take and take and take more! No wonder your counts are low. They took it all in little vials to run tests.

 

But truly, the blood panels are important. There are two tests that I have had repeatedly already, and so I think it is a good idea to understand what on earth they’re testing for. The first is the CBC, or complete blood count, and differential with platelets. The second is the CMP or comprehensive metabolic panel.

 

Today we will focus on the CBC and diff w/platelets.

 

What is it? It’s what is sounds like, actually. It’s a test to determine information about your blood cells and platelets. The following is a list of what’s included in it and the ranges from my treatment facility. The ranges may vary slightly depending on where you are being treated unless it is something that all doctors agree on.

 

The components of the CBC include:

 

WBC - Stands for: White Blood Cells - Means: The measurement of the amount of the cells that are part of your immune system. Infections and some drugs can make your number of white blood cells go down. If they are too low, you are more at risk for infections and have a harder time fighting against infections. - Range: 4.2-10

 

RBC - Stands for: Red Blood Cells - Means: Cells that carry oxygen around your body and take carbon dioxide out of your body. They’re important. If you have too few, it is called anemia. Anemia can make you feel tired and weak. It is caused when you have low iron, which is directly related to the amount of hemoglobin in your red blood cells. - Range: 4.20-5.40

 

Hgb - Stands for: Hemoglobin - Means: The measurement of a protein that is produced in your bone marrow that is stored in red blood cells. It’s what helps you transport oxygen and carbon dioxide around your body and is the reason the cells are red. - Range: 12.0-16.0

 

HCT - Stands for: Hematocrit - Means: This is the measurement of how much of your blood is made up of red blood cells. If this goes too low, it could mean that you have low iron, which can lead to less red blood cells, leading to anemia. See how these things are related? - Range: 36.0-48.0

 

MCV - Stands for: Mean Corpuscular Volume - Means: The measurement of the actual size of the red blood cells. Measured in femtoliters per cell. Femtoliters are a metric unit of volume = to 10 to the -15 litres. If your red blood cells are too small, it could mean that you have... anemia. Or another deficiency. But basically anemia is what I care about. - Range: 81.0-101.0

 

MCH - Stands for: Mean Corpuscular Hemoglobin - Means: The measurement of the average mass of hemoglobin per red blood cell. It will be lower if you have - wait for it! - anemia. - Range: 27.0-34.0

 

MCHC - Stands for:  Mean Corpuscular Hemoglobin Concentration - Means: The measurement of the average concentration of hemoglobin in a single red blood cell. To get this one, you can divide the hemoglobin by the hematocrit. Assumption: If it’s low? ANEMIA. - Range: 31.5-36.0

 

RDW - Stands for: Red blood cell Distribution Width - Means: This measures range of size of the red blood cells. If this one goes low? You’ll never guess what that could mean. Anemia - Range: 11.5-14.5

 

Platelet Count - Stands for: Uhm. Platelet Count. I’ll change that for the rest... - Means: The measurement of the number of platelets in the blood. Platelets are little helpers that help clot your blood. If you cut yourself, and your platelet count is low and you are anemic, you will bleed more. Good side effect: I won’t have to shave for the next six months! Bad side effect: I’ll lose all my hair anyway. Can’t win ‘em all. - Range: 140-440

 

Mean Platelet Volume - Means: The measurement of the average size of the platelets found in the blood. If they’re too small, indicates anemia. - Range: 7.0-12.0

 

Neutrophils - Means: A type of white blood cell that offers protection from infections and does other stuff too. But we care about infections. They are the first responders to a bacterial infection. They are heroes. - Range: 37.-73.0

 

Lymphocytes - Means: They are cells in the immune system that fight infection. Their home base in the lymph nodes, but they can range all over the body.  - Range: 20.0-53.0

 

Monocytes - Means: They are leukocytes. Those are a white blood cells. They are the largest type and help in adaptive immunity.  - Range: 2.5-12.0

 

Eosinophils - Means: Disease-fighting white blood cells. Think, like, ninja cells. They tend to congregate around an infection, allergic reaction, or cancer. Obviously, if you have this count high, you’d prefer it’s not the third option. I’m glad mine have been in the normal range so far. - Range: 0.5-10.0

 

Basophils - Means: White blood cells that are produced in the bone marrow and are part of your immune system. Low? Possible allergic reaction. High?  Chronic inflammation or something bad. Bad being the medical term for “Something you don’t want to get.” - Range: 0.0-3.0

 

ABS Neutrophils - Stands for: Absolute Neutrophil Count. Means: A measure of the number of neutrophils in the blood, basically. I found them called neutrophil granulocytes or polymorphonuclear cells - we’ll just stick with the counting part. - Range: 1.40-6.50

 

ABS Lymphocytes - Means: A measure of the number of lymphocytes helping to fight disease in the body. - Range: 1.2-3.4

 

ABS Monocytes - Means: A measure of the number of monocytes. This one is interesting to me because it can be linked to lymphomas or leukemias. One of the very rare possible side effects is that Talazoparib, the drug I’ll be taking, can cause myeloid leukemia. That is a cancer of the blood and blood marrow. Best to avoid that if we can. - Range: 0.0-0.8

 

ABS Eosinophils - Means: The measure of the eosinophils in the blood.  - Range: 0.0-0.7

 

ABS Basophils - Means: The measure of the number of basophils in the blood. - Range: 0.0-0.2

 

Currently all my numbers are within the normal ranges, but I haven’t started treatment yet.

 

Information above brought to you by many Google searches and several days because it was a lot to look up. I don’t want to give out bad information if I can avoid it.

Filed under: Medical Definitions

All Cancers are Different

Okay. Let’s talk about cancer. All cancers are different. We are all unique human beings. We all have unique beliefs and unique backgrounds. We look different, we talk different - different languages, or the same language but it just sounds different. We have different priorities in life, different dreams.

 

We also have different and unique genetic makeups. This part we can’t really control. We can perhaps have some control over our environment, but we cannot control the genes that were passed down to us. And not all cancers can be explained by genes. Sometimes perfectly healthy people with no genetic predisposition end up with a cancer diagnosis. Why? I wish I knew.

Red and white gladiolus and pink gladiolus.
Gladiolus flowers.

But all cancers are different because we are all made up differently. In breast cancer there are hormone positive and hormone negative, as well as a mix of positive and negative. There are pre-cancers and active cancers. There are aggressive tumors and tumors that just chill for years. There are cancers that can be at least partially explained by genetics, and cancers that have no known source.

 

It used to be that cancers were all treated the same. You have breast cancer, we will treat it with these drugs and a mastectomy. Today doctors and scientists are realizing that every cancer is going to be a little bit different, therefore, each treatment should be tailored to the individual.

 

Not every woman who has breast cancer needs a mastectomy. There are many studies on different treatments and how they affect the patients. They can monitor during treatment to see if the chosen treatments are working. Science is amazing, and I am thankful for all the people who have put so much time and effort into the treatments available today.

 

There are still strides to be made, but I’m hopeful that targeted gene therapy will eventually become the norm for many cancer patients. They’ll have a treatment made for them and will be monitored to ensure that they are responding in a positive way. And there will be a cure one day, I hope. A cure that makes the chances of the cancer ever coming back slim to none.

 

We’re not there yet. I know people are working on it. Some have spent or are spending their entire lives trying to solve this problem. I want to thank those people. You all have made a huge difference in my life and in the lives of countless people who have come before and will come after. Keep looking for the answers.

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Student Loans

I never thought I would get cancer. Or, rather, I hoped I would never get cancer. But at least if I did get cancer, I thought it would be after my student loans were paid off.

 

Nope.

 

I have managed to pay off most of them. When I left court reporting school I was staring down $50,000 in student loan debt. $30,000 incurred during my time in court reporting school, and the other $20,000 was the remnants of what had been a $30,000 debt to the state school I attended. I graduated with my Bachelor of Arts in 2002 and I left court reporting school with an Associate of Arts in 2012.

 

I’m down to just over $8,000. I had been using 0% credit cards to knock out chunks at a time and force myself to make higher payments because I hate paying interest. The transfer fees were less than the interest I’d pay if I just left them, and the tax benefit was less than the benefit of having lower payments over time. This is only a strategy you can use if you are extremely strict and never fail to make those higher payments. Credit cards are very, very easy to abuse and fall into a massive hole that you have to climb out of. Most people never climb out of that hole once they are in there.

 

The payment isn’t huge, but if I keep paying the minimum, I could easily be paying on student loans until I’m 50. That’s 11 years and one week from now for those keeping track.

 

I was hoping to pay them off within a year. Alas, breast cancer. Meanie.

 

This is my debt to pay, of course, and I will pay it. I am only using any money donated to me to pay medical bills and related expenses. This is the one bill I can ask to stop for a while if I need to since the balance I have left is government loans and deferment is an option. I’m hoping to keep making the minimum payment for now, especially since I can work and hope to keep working.

 

It’s just annoying. I’ve done everything right, paid everything on time, done all the things I need to perform in the adult phase of life only to have a life-altering diagnosis. I want to scream that life isn’t fair, but I knew that already.

 

I’ll get through this, and I’m hoping that annoyed is the worst thing I feel in this process.

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Ultrasound Win, I Think?

I had an ultrasound yesterday. And blood work. Those are the last two pieces to get me registered for my clinical trial.

 

The blood work was kind of funny, because the phlebotomist, someone who is trained to draw blood, had extra tubes to fill that were normally not present, and different tubes that didn’t seem like they were filled, but they were. It’s not really funny, but we try to find humor in little quirks to keep our spirits up. At least I do.

Yellow Asiatic lily with red spots, covered in dew.
Asiatic lilies are some of my favorite lilies.

 

After that it was time for the ultrasound. I had not really had a full tata ultrasound at all yet. Early on they had used it to find the tumor on my right side, and then to attempt to aspirate the cyst. Oops! Not a cyst. Biopsy then. And later to biopsy the other site found on my right side.

 

So, this was a full ultrasound on both sides. In the waiting for this, I was nervous. It’s been around two months since I was diagnosed with an aggressive breast cancer. What if it had doubled in size and traveled to my lymph nodes? Or what if they found more spots of concern? What if, what if, what if???

 

I made sure the ultrasound tech knew that I knew how it was supposed to be, so we talked the whole way through. I was shown where the biggest spot is - measured at 1.99 yesterday, I wish that meant it was shrinking on its own. Not likely. It is posterior, meaning the back part of the breast tissue and very near the muscle and you could see my lungs on the ultrasound. They glisten. Kinda neat.

 

It was still there. Same place. Hadn’t wandered off to invade other part unknown. We didn’t spend any time on the smaller spot, but we also looked at the left side and saw the shading where my DCIS probably is. Fascinating.

 

After the imaging was done, the tech left to get the information to the doctor who would then come in and talk to me. I had seen this doctor in 2015 when I was being sent around to different facilities to have my tatas squished by all. I think I had three mammograms that year. This doctor had the mammogram done and then requested I be sent for an MRI.

 

The insurance company denied my MRI, so I didn’t get one.

 

Would the MRI have caught something suspicious that early? Maybe. Maybe not.

 

Anyway, I’m pretty sure smoke came out of the doctor’s ears as I relayed this information. I had all the things that should have made me a shoo-in for an MRI: Family history, age - I was 34 at mammogram time in 2015 most likely, dense breast tissue - I did not know this was a thing until my first mammogram, and now I’ve had so many people tell me that I have dense breast tissue and be fascinated by it that I know I’m fairly abnormal. Yesterday I was told most women have a mix of fatty and dense tissue, but mine are mostly dense tissue.

 

No wonder they never got much smaller when I’d lose weight.

 

Sidetracked. Sorry. Anyway, doctor was not happy because of the what ifs. What if we had found something earlier? Then I’d be through and done with all this stuff by now. What if insurance companies didn’t deny coverage for certain procedures based on actuarial tables and instead looked at the individual patient?

 

I will say, though, that was a different insurance company and it’s crazy how much more they pay attention when your actual diagnosis is 100% without a doubt breast cancer.

 

My wish from now to forever is that the insurance companies listen to the doctors. Most doctors don’t order tests willy-nilly. Most are genuinely concerned for their patients and want to do what is right for them.

 

What if I’d had an MRI in 2015? We’ll never know because I am currently unable to change the past.

Filed under: Uncategorized

One Step Back

Well, poo. I won’t be able to start my treatment on August 6th as planned. Instead, on August 6th I’ll be having an ultrasound as it is required for the clinical trial. And then we have to push everything back until after we get back from vacation.

 

Good part? I get to try some West Coast beers!

 

Bad part? Delaying treatment. Again. There’s an underlying anxiety that it will just suddenly race into my lymph nodes and suddenly I’ll be much, much sicker very quickly. Is it rational? Probably not.

 

Other bad part? The new start date - August 20 - is right before a big three-day job. So, do I give up the job or attempt to suffer through? Maybe I’ll have no side effects right away. Or maybe I won’t be able to leave the toilet. Or ask to delay to the 27th? After all, what’s one more week?

 

Cancer is never convenient, obviously, but sheesh. This is dragging on forever. I read stories of others who go from diagnosis to treatment in three weeks. Am I okay delaying so long? It’s been almost two months since I was diagnosed.

 

Basically, I’m scared. I will probably need my anxiety meds sooner rather than later.

 

In other news… I’ve been working out almost every day! I am not eating very well, admittedly, but at least I’ve got part of it down. I feel like I need to eat all my favorite foods now since the drugs might change how things taste, and who knows if it’ll ever taste the same. I do throw in quite a few vegetables, though, because I actually like them. But in between the veggies are nachos and basically anything in the Mexican food family.

 

And now I’ve googled how fast can breast cancer grow and am thoroughly freaked out. I guess we’ll see on Tuesday if it’s decided to do something stupid like double in size since it was first found. At least it hadn’t grown much if at all in the weeks between my first ultrasound and my PET scan. That was about four weeks.

 

Don't google stuff like this.

Ohm.

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It’s My Birthday!

When my mom turned 39, the year I am entering now, she decided she wasn’t going to go beyond that. At 40, she received a mug that said, “39 Forever.” I remember using it and seeing it and having no real comprehension of the whole getting older part of life. Now that I’m getting there, I still don’t comprehend getting older.

Edinburgh Castle from below and a bird flying in the top left corner of the photo.
Two years ago today we were in Edinburgh!

 

What I do know is that I think I’ll be looking forward to 40. When I get to 40, hopefully I’ll be done with all the surgeries and the treatments and have cancer in the rearview mirror. There are a lot of dependencies and things that could go wrong, but I do hope to be done with this part within a year.

 

But for today? I’m working a little, going out to lunch shortly, having pulled pork nachos for dinner, and just relaxing. Went for a walk with the dogs and am just kind of kicking back and relaxing.

 

An interesting thing about my birthday is that it is also my sister’s birthday. We are not twins. I just happened to be born on her birthday when she turned three. We spent our childhood pretty much being treated like twins since we weren’t too far apart in age and one party is easier than two. We did get our own sleepover parties sometimes, and once I remember making tiny pizzas with all of my friends. We would usually get our own cakes, though, so that was good.

 

Best birthday present she ever got. I’m sure she’ll agree!

 

Anyway, this year for my birthday I am just requesting anyone reading this to do something nice for someone. Open a door, buy them a brand new car, help change a tire, send them on a cruise - anything. I’ll try to do the same, and will also try to be cognizant of making sure I’m nice to people whenever I happen to come across them.

 

I have made it my life’s mission to make TSA agents smile - I’ve got a pretty good track record.

 

Oh! And I found out it’s also DOGust 1st, so I will celebrate the birthdays of all our rescue dogs, current and those that have come before. Apparently today is also National Girlfriend’s Day. I am failing on this one as I have no plans to hang out with any girlfriends.

Arthur and Edie asleep on the couch.
Arthur and Edie.

Spencer and Edie riding in the car.
Spencer and Edie

Ryder the dog on his bed.
Ryder

 

I’m pretending today that everything is normal and that I am fine and I’m happy I only woke up sore this morning because I lifted weights yesterday.

 

And… apparently I share a birthday with Jason Mamoa aka Aquaman. He’s a year older. What makes this even more fun is that we attended the same middle school and high school for a time. Obviously we weren’t best buds or I’d have known we shared a birthday.

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