I Am Now USB Capable (No, not really)

My chemo port was installed today. I had to be at the hospital at 6am to make sure paperwork got done in time.

Imagine my surprise when they told me that their intent for it was to put me in "twilight" but with my BMI, it wasn't an option, and they didn't have orders for being able to use general anesthesia.

In other words, I'd be awake for the entire procedure, with "moderate sedation".

Since my Oncologist, the scheduling nurse, the nurse who called to go over pre-surgery instructions, and the nurse who called with my appointment reminder told me I'd be awake for the entire procedure with "moderate sedation" I went into this thinking that's what was going to happen.

So basically they did what they'd been telling me they'd do, not the "Surprise!  Twilight!" that I was told they couldn't do.

Would have been a nicer surprise than sparkling vampires, but I digress...

They didn't give me anything for relaxation until I was in the OR. The entire time my brain still freaking out as it has been since the Oncologist told me about the port.

The meds definitely helped silence the part of my brain that was freaking out.  The "beesting" of the lidocaine injection was the most painful part of the procedure.  It was a pretty quick procedure, and a 45 minute period in 'recovery' followed before they let me go home.  I was home by 11am.

SIL drove me home, and I felt well enough to want to go ahead and work, but I behaved myself and took a nap instead.  Needed it after not sleeping the last two nights. 😂

I'm up and about, have taken some aleve, and put some ice on it.  The area's tender, but, doesn't look too bad. I did panic a little bit when I looked at it because the entire area was blue. Took me a few seconds to realize that the entire area was blue. I mean from my jaw down to mid-ribcage. Bright blue. I guess it's a bit of color so they can visually see what areas of the skin surface have been sterilized?  Either way, at first I thought there was some very serious bruising going on (thus the little bit of panic). It wiped off pretty easily too.

I have to leave the tagaderm on for 3 days. It's waterproof, so I'll be able to shower. No submersing it in liquid though.

If you don't have tagaderm (or some variation) in your home or travel first aid kit, I highly recommend it. I was introduced to it a few years ago and it is some amazing stuff. Not quite as easy to apply as a bandaid, but incredibly flexible, comes off without ripping off your skin, and lasts for days.

Relatively inexpensive on Amazon too.

The Illusion of Control

The chemo people called me today and we talked about everything I could expect with chemo and what was going on in the schedule.She spent an hour on the phone with me and I am SO APPRECIATIVE.

Apparently they were just placing holds waiting on the MUGA scan. I was a bit confused on this, because I thought I needed the chemo port to happen before chemo could even start, and I don't have my chemo port.

She explained they were going to do a PICC line if the chemo port wasn't in place. A PICC line basically means they're going to go in through my arm, and insert a long catheter down the vein until they get it into my chest where the larger veins are.

Yeh. No. I'm already freaked out enough about the chemo port, where they essentially do the same thing, but they start in the chest and go to the jugular. I don't need to be freaked out about this. I'll wait for the chemo port.

We negotiated. I realize that with cancer some control over my life is going out the door. My brain needs the illusion of control.

I also found out that I need to go have a blood draw a few days before every chemo treatment so they can check my blood levels.

Random Schedule Drops

Things started showing up on my calendar last night and I went into meltdown mode. I called trying to get answers, but all I could do was leave a message.

They have me starting chemo June 2nd. I haven't had the MUGA scan, or port installed.

Talk about anxiety being triggered. I like to have things nice and ordered on my calendar. I'm not a fan of 'unknowns' like this. What is going on?

I also talked to a therapist this morning, and I've realized three things that are going to be extremely hard for me:

• I'm going to have to accept help from others
• I'm going to have to learn to ask for help when I need it
• I'm going to have to give up some control over my schedule

Anyone who knows me knows I have an independent streak.

I can do this. I just have to breathe.

What the hell is going on with this chemo schedule?

So. Much. Chemo.

I met with my oncologist today.  We'll call her Dr. O.

She went over the PET scan results in more detail with me, and "according to the math" my breast cancer is "Stage 1B".  I figured it was either a one or two, but she said the size or the tumors make it a 1B rather than a 2A.

For treatment the plan is

• Doxorubicin + Cytoxan every other week for 8 weeks (so 4 rounds)
• Taxol every week for 12 weeks (12 rounds)
• Surgery 4-6 weeks later (lumpectomy!)
• Radiation 4-6 weeks after that (no plan on how long yet)

Is this a lot? It feels like a lot.

This puts me at 20 weeks of treatment (or almost 5 months).

She said I'll need a port installed in my chest for the chemo to be run through, because it'll wreck the veins if they do it in the arms. I also need to pay attention to any tingling in my fingers because neuropathy is a cumulative side effect that can't be reversed. There's also the risk of heart damage. I'll need a MUGA scan to make sure my heart function is OK before they can begin.

FUN.

She said I'd feel fine the day of chemo, and likely the day after, but then I'd feel "pretty crummy" like I had a severe case of the flu for two days. Following that I'd feel tired, but recovering.

I've never had the flu that I know of. When everyone else was getting the flu, I was getting fun things like strep throat and bronchitis.

I'm planning on working through it as much as I can. Sadly this means I'll be burning my PTO on cancer instead of being able to save it up for nice things like a vacation. The other option is taking a very long leave of absence, but I'd really hate that. I love my job. Most days 🤣

This is why we can't have nice things.

So much for my summer. With Covid being "over" I was looking forward to meetups, outdoor groups, and board game groups ramping up again. Instead I'll be immunocompromised and masking up.

Hell, the system already has me flagged as "immunocompromised" and they gave me the pneumonia vaccine today.

But then I'd rather be aggressive than having to do all of this again because we weren't aggressive enough.

That pectoral chain worries me. It all comes down to what is happening there.

I was supposed to finish my Bachelor's and start my Master's degree and go on a cruise in December to celebrate.

I'm pretty sure this means putting off the Master's degree until next fall.

I'm not even sure I'll get to graduate this fall.

And Dr. O didn't seem very confident that I'd be able to take my DC class.

I feel like everything I've been looking forward to this year is being taken away.

And We Have a Plan

Today was the visit with the surgeon, and it's as I suspected, there will be chemo. I did cry a little at that, but was already prepared for that answer.

The big reason for the chemo is because of the pectoral chain and just not knowing whether it's cancer in there, or not.

If surgery was first, they'd be removing the pectoral chain, along with both lumps (lumpectomy).

Instead, we're doing chemo first. She said it would be about every 3 weeks for a few months. I guess that sounds like maybe 4 or 5 sessions?  She's not the oncologist, so she didn't have that answer for me. The goal is to shrink the field of surgery.

About 4-6 weeks after chemo is finished, they'll do the lumpectomy to remove both breast cancer masses.

Another 4-6 weeks following that surgery, they'll be putting me through radiation therapy. She told me that'll be 5 days a week for at least three weeks.

She also confirmed that IVF/pregnancy will not be an option in my future. Hormone suppression will start at the end of this journey. I'm not sure if that means after chemo, after surgery, or after radiation.

If there's a bright side, I guess it's that I won't be needing a full mastectomy and reconstructive surgery.

I meet with the oncologist Monday.

I've got this.

I'm going to lose my hair.

Am I even going to be able to take my class trip to DC?  I've been looking forward to that since early last fall. The surgeon feels pretty positive that I will be able to.

I need to know if I have to drop the class by May 17th.

The PET Scan

I went in today for the PET scan, which was an interesting experience, I wasn't really sure what to expect.

Basically they shot me up wtih the radioactive 'stuff' then had me sit in a darkened room for 45 minutes while it circulated. No reading, talking, texting, anything, just sitting quietly. It honestly would have made for a nice nap if I'd had a pillow provided to me.

The way it works is the radioactive dye will basically 'collect' anywhere energy is being expended in the body, so if you're braining, it's going to collect in your brain, and if you're walking? Your leg muscles I guess? At least that's how it was explaiend to me.

After my 45 minutes they did the scan, the machine is kind of like a bit CT scanner with a long tube. Holding still was the hardest part, one of my arms wasn't in a very good position.

I expected the results to be next day at least, but they came in tonight.

Moderate metabolic activity in the breast where the tumor is.

Hypermetabolic activity in the lymph node we know has a tumor.

Mild metabolic activity in the pectoral chain. The report says that could be a result of my body trying to fight cancer, or that it could be cancer. There's no way to really tell.

That's the one that has me worried though. If there's cancer in more lymph nodes, I'm 99% sure I'm headed for chemo.

I'm feeling pretty OK about this one and while I was debating having some one go with me to talk to the surgeon Friday, I'm ready. I can handle this one.

More Tests & Doctors

The scheduling nurse called today to set up my PET scan and appoinment with the surgeon. Both are happening next week.

The PET scan is done to determine what, if any spread there is of the breast cancer through the rest of my body. They won't be able to tell what stage breast cancer I have until they've done this scan.

I've heard of this scan through TV, so I kind of knew what it was used for, but not the details. I'll be there for about an hour and a half.

I talk to the surgeon next Thursday.

They're moving quickly. I'm so grateful for that.

I did tell them I have trip to DC coming up in mid-June for one of my classes.  I'm hoping I'll still be able to do that. They did say we might be able to work around it.

I understand cancer vs. class. One is far more important and takes priority over the other.

Mental Health Crutches

I had three panic attacks on Tuesday. I've managed to hold off any more with an almost manic desperation.

I had my appointment with my GP and she asked how I'm doing. I told her. It's too much right now to try and process, and panic attacks aren't helping. I need to be able to function.

I have generalized anxiety, but usually I have it under control. Anxiety typically just manifests as me picking at my cuticles or falling into OCD habits that make my brain happy.

Right now, they are barely in control.

I need the crutches right now, or I'll lose it.

I asked if there was anything I can take short term to help with anxiety/panic attacks. Yes. There is.

Thank god.

Understanding My Cancer

So yesterday I received the biopsy report from the tissue samples. Today I talked to one of the breast cancer survivors at work who helped me to go over and understand what the report said. I'm pretty proud of myself though, I understood about 75% of it going in. I appreciate the candidness and support.

Estrogen positive, progesterone positive, and HER2 negative.

Estrogen and Progestrone positive means the cancer feeds off those hormones.  I guess it's a good thing I hadn't started IVF and that I'm not pregnant.

But it also means never getting pregnant. In all likelihood, it means at some point being on treatments to stop my body from produncing those hormones.

This, from what I am understanding, is the most common type of breast cancer.

It doesn't make it any less devastating on an emotional level.

There's still adoption... right?

I am Groot Cancer

The biopsy site has been itching horribly, but it's finally hit the 5 day mark, so I can take it off. I can't unsee Groot in this.

It looks like I may have a sensitivity to the adhesive they used.  Joy!

The Call

In the middle of my team meeting at work today the phone rang.  I almost let it go to voicemail before mentally kicking myself in the head.

It was Kaiser.

I also saw a the pop-up on my computer indicating there was a new email from Kaiser.

The doctor did say he'd call one way or the other as soon as the results were in.

All of this went through my head as I'm watching the phone ring. Yes, I know, watching?  Ringing is listening, not watching. Maybe I should more properly say I was watching the screen as the phone rang.

I dropped the meeting and picked up.

Cancer.

Panic attack.

The urge to hide in the back of my closet was strong.

Cancer.

For his part, he tried to be reassuring. He told me I'll get a phone call in the next day or two scheduling an appointment with a surgeon. I may or may not need chemo.

I posted my PSA in our women's ERG at work. The outpouring of support was, in, a word, overwhelming. Women with family who have had breast cancer. Women who have had breast cancer. Several reached out to me to talk to me about their journeys.

So. Many. Tears.

It feels very surreal. I'm not sick. Except I'm very sick. This is what having cancer feels like?

Here's hoping it's a very quick surgery and I don't need chemo. With one of the lumps impacting a lymph node, and knowing that lymph nodes can carry cancer to other parts of my body, I have a sneaking suspicion there's chemo in my future.

I have an appointment with my GP on Thursday. Instead of talking about weight loss, we'll be talking about cancer.

I'm scared.

Birard Code WHAT?

Kaiser finally released the results from the mammogram + sonogram that I had Wednesday. I understood most of it, but had to learn something new.

For those of you who may have seen this term on your reports, and not understood what it meant, the BIRAD code is the 'diagnosis' result on your mammogram. I'll provide the scale here:

Category	Definition
0 - Incomplete	Additional imaging evaluation and/or comparison to prior mammograms (or other imaging tests) is needed.
1 - Negative	This is a normal test result.
2 - Benign (non-cancerous) finding	This is also a negative test result (there’s no sign of cancer), but the radiologist chooses to describe a finding that is not cancer, such as benign calcifications, masses, or lymph nodes in the breast. This can also be used to describe changes from a prior procedure (such as a biopsy) in the breast.
3 - Probably benign finding	A finding in this category has a very low (no more than 2%) chance of being cancer, but hasn't been proven benign.
4 - Suspicious abnormality	These findings do not definitely look like cancer but could be cancer. The radiologist is concerned enough to recommend a biopsy. The findings in this category can have a wide range of suspicion levels. For this reason, this category is often divided further: 4A: Finding with a low likelihood of being cancer (more than 2% but no more than 10%) 4B: Finding with a moderate likelihood of being cancer (more than 10% but no more than 50%) 4C: Finding with a high likelihood of being cancer (more than 50% but less than 95%), but not as high as Category 5
5 - Highly suggestive of malignancy	The findings look like cancer and have a high chance (at least 95%) of being cancer. Biopsy is very strongly recommended.
6 - Known biopsy-proven malignancy	This category is only used for findings on a mammogram (or ultrasound or MRI) that have already been shown to be cancer by a previous biopsy. Imaging may be used in this way to see how well the cancer is responding to treatment.

I've paraphrased or reduced length on a lot of this. You can find the original source for the above table on the American Cancer Society's website here.

The TLDR of everything is they rated the masses in my right breast as a BIRARD Code 5. That means there's a 95% chance it's malignant.

Now I understand why they were aggressive about getting the biopsy sooner rather than later. 

Trying not to have a meltdown. Maybe they're wrong. Maybe I'm in the 5%.

Unlikely.

I'm not freaking out. If I say it enough, I might not freak out.

I may have cancer.

Making Lemonade?

I made the decision today that when I have the results, one way or the other, I'll be putting a PSA into our Women's ERG at work. I worry it'll bite me in the ass at some point later in life, but I'm not at all worried about losing my job over this. I know people will be supportive at work, it's just the type of culture we have.

I have it all written out, sitting in notepad. I'm hoping this is just a really bad scare.

Punched In The Booby

I had the biopsy this morning. Found out there's not one mass, but two masses. One in my breast, and the other in one of my lymph nodes.

When the Doctor came in, he discussed the procedure with me. It didn't help much with the fear, I wasn't worried about the procedure itself, I'm terrified-bordering-on-panic about the results.

He numbed up my right boob really good, all I felt was tugging. That needle was HUGE. It reminded me of the IV needle they used when I had my hyperparathyroidectomy. He took 7 core samples total. After that, he put little metal 'clips' in my boob which are supposed to mark both lumps, so that in the future, anyone doing a mammogram will know that those two lumps were already biopsied.

The Doctor was very clear that he would call me as soon as the results were in, one way or another, but it might take up to 5 days.

I am thankful for several things during this procedure:

• The nurse who held my hand (I'm sorry if I bruised it!)
• The nurse who held a fan in front of my face (That was brilliant!)
• The doctor who give me the time I needed to push past the panic attacks that kept threatening to break fee

There's a 3x4 bandage with steristrips covering the biopsy site, which seems a bit extreme for needle sticks (granted, those needles were BIG).  I feel like I've been punched in the side-boob. I really should have taken some one with me on this one.

I Have a Bad Feeling About This

I had the follow-up mammogram today, it was also 3D. I also had a sonogram they had scheduled me for, but didn't tell me about, that was a surprise!

I saw the monitor as they were doing the sonogram. There were some impressively large black spots showing up. I really hope that's a case of magnification. I'm pretty sure I know what those black things mean - a tumor. I just don't know whether it's benign or cancer.

Right after they finished the sonogram, they sent in a doctor and a nurse to discuss having a biopsy. My choises were tomorrow or next week. Of course, I immediately pulled out my calendar to figure out when I could fit it in between my meetings. As soon as I opened my mouth to begin appointment negotiations, I knew I was wrong. I corrected myself and told her I'd take the soonest available tomorrow.

I know something suspicious is there. I'm scared.

The IVF Verdict

I met with the fertility clinic's doctor today about IVF. While I was hoping we'd be able to use my own eggs, the numbers look pretty bad. I went in expecting this given my age (44) and history, but it still hurt. Managed not to cry until we were done talking. I started looking at an egg bank for potential donors. That made me cry.

Part of me feels like there's no use crying over spilt milk. The time was never right, the money was never right. Now that it is, it's too late for my own. It doesn't mean everything is over, but it's still a type of mourning.

The Mammogram Follow-up Call

 Kaiser called me today to schedule the follow up from my annual. I told them I already had it scheduled, and asked what the report meant by "right breast asymmetry". They said it's just a part they couldn't make out and doing a second mammogram is "routine" and it's "probably nothing"

Alarm bells?  Kinda? It always bothers me when medical people are vague like that, then tell me it's routine and probably nothing. I know the medical people don't want to cause alarm in patients, but I'd rather hear it from them than asking Doctor Google.

They're probably right, and I'm being a little alarmist.

The Mammogram Report

I got my mammogram report back today and read through it. It says everything on the left is OK, but there's a "right breast asymmetry". According to Doctor Google, this can mean any number of things. I'm wondering about that lymph node though. I didn't know they looked at those as a part of mammography. Learn something new every day!

There's a recommendation on the report to get another one done, so I went ahead and scheduled.

Time for that Mammogram

I had my annual mammogram today. I wanted to get it early this year and have it line up with my physical, but no-can-do. Had to wait the actual 12 months. Happily Kaiser has been installing 3D across the state.

When the girl took my pictures, she mentioned that one of my right-side lymph nodes was enlarged and asked if I'd recently had a vaccination. My last vaccination was the flu back in November. I've been feeling under the weather lately and I think I just got through a mild sinus infection (again).

OK, that was the understatement of the century. Not under the weather. Exhausted. I've been attributing it to stress since I work full time, and I'm a full time college student. I received a promotion back in November, so that added to the stress, but not significantly. It took away other stressors. I told her this. She asked me about my iron intake and suggested increasing it. We'll see. I've got a nice rib roast I can make this week.