Author: Amanda Lundberg

I hate waiting.

You have cancer. You’d think everyone would be freaking out and wanting to get this taken care of immediately! No. You wait. You wait for the first appointment with the people who can start to solve this. That was Monday. 

You wait for the MRI results. Those came in Tuesday while we were on the way to our pet first aid course. The course was great, and now we know how to do CPR and the Heimlich on our pets as well as find a pulse. The pulse can be found on any four-legged animal by pressing gently with the middle and ring finger on their femoral artery which is located in the crease where their hind leg meets their body. We practiced on Arthur a bit last night. He just thought he was getting belly rubs.

I digress. MRI results. Probably because I don’t want to think about it. They found another mass in my right breast. It’s smaller and was not visible on the mammogram. The initial mass is 2.1 centimeters, which puts me strongly in the chemo first/surgery later category. These things will happen either way. It’s just a matter of which is first.

Then there’s the left breast. It decided maybe to get in on the action too. They noted some calcification. What on earth is that? A calcification in the breast is usually a benign calcium deposit. Generally, nothing to worry about.

Apparently mine is maybe something to worry about. 

What does this all mean? More waiting. I have oncology appointments with two different oncologists Monday and Tuesday. I hope they agree on everything and that I get to use the one five minutes from my house since by the end of this we will be best buddies. Additional testing will happen on July 3.

The additional testing will be an ultrasound-guided biopsy on the right and a stereotactic breast biopsy on the left. The doctor will use ultrasound imaging to guide where they should insert the needle to obtain a tissue sample. I’ve also had ultrasounds on my knee and ankle. Normal women have ultrasounds to look at their babies while in the womb. I’ve decided to be abby-normal.

The stereotactic biopsy sounds a little more… yeah. I need to do more research, but currently I’ve stopped at ‘large bore needle’ – it’s probably a similar needle to the ultrasound biopsy, but I hadn’t read that part first so I’m cool with it.

They should be able to find the mass on the right at least with that and get samples. I won’t say ‘a sample’ because the first biopsy was six samples and from what I can decipher from the bit of information I have, five of those were viable to be tested.

I watched the ultrasound as they did my initial biopsy. If you’re not grossed out by medical stuff, it’s pretty fascinating. I’ve been through enough medical and nursing school now via my job that I can watch this stuff. I used to not be able to watch them prick me with a needle. Now I can. I guess that’s good.

And another mammogram. My fave. 

And then? More waiting. July 4th is a holiday in the US. I guarantee the people who read biopsies aren’t working that day. Maybe I’ll get lucky and they’ll look at them immediately, but I’m not going to hold my breath. And after talking to the nurse, she said Monday/Tuesday/Wednesday before the results and my surgeon will call me with them.

So, this pushes me into the following week before any decisions can be truly made. Fun.

Did I mention I hate waiting?

That’s what I told myself as the MRI machine clicked and fussed around me. I was facedown on a table with my boobs hanging through the table. I’d started with head Enya, but she was too peaceful for the racket going on around. Blue Men. That’s the ticket. As the sounds moved around me – real or imagined? Not sure as I’m not an MRI tech – I could pretend other Blue Men picked it up and were playing the same thing, just it had moved on to the next member of the ensemble.

And the whirring of the machine when nothing was happening? That was one Blue Man the entire time cranking an instrument that made that noise. It worked. I went through 30-35 minutes in a tube on my face with boobs dangling and my arms stretched above my head. My hands started to fall asleep near the end, but it wasn’t too bad.

That was the last test of the day. I should know what it says tomorrow when the surgeon calls. 

The first thing was a blood draw. Everyone wanted some, apparently, but my phlebotomist – a person who draws blood – was fantastic. We spent the entire 2 minutes together (okay, maybe 5) cracking jokes. I like it when people enjoy their work. Makes it easier for everyone involved.

Then on to genetic counseling. She explained how it works and we determined that it is very different than it was 10 years ago when my sister was tested and showed a negative test. You are not likely to have the genetic component, but if you are found to have it, it’s good to know. It can color your treatment decisions. 

After that was my surgical consult. At the moment, depending on what oncology says next week, all options are on the table. My cancer could be treated via lumpectomy or mastectomy. A lumpectomy – removal of the offending area only – would require radiation treatment after. A mastectomy – removal of one or both breasts – would not require radiation. Currently, I could do surgery + chemo, or chemo + surgery. Radiation would be right after surgery, whichever way it went. 

Then there are options for reconstruction. You could just opt for none, in which case a prosthesis may be used. You could opt for implants – not my idea of fun. Or there’s a procedure where they can use belly fat to reconstruct the breast if your fat is the right fat or something. The diet can wait? 

Bottom line for me: No real decision yet.

And then there was the MRI, or magnetic resonance imaging. That’s where I started and where I will end. Just imagine The Blue Man Group on a dark stage. It helps if you keep your eyes closed.

Last night I dreamt that the house lost its roof. Not that it blew away, but that the whole thing popped off and was just sitting next to it. This kept coming back in the dreams that followed. It was just laying there the whole time. Odd.

So. Many. Phone calls. As part of my treatment I had to transfer from one facility to another due to insurance. The insurance companies are fighting – I might not be covered at the facility where I was diagnosed after June 30th. Or maybe I will be. Better just to go to the new place. It’s a good place, but I already miss my patient advocate from the first place. I don’t have one yet at the new place that I am aware of.

Instead we are just getting phone calls. I tell five people my family history. Ask that all records be transferred to the new facility. I know they got them. Get a call asking for history. The history will not change. My sister had breast cancer so I was getting mammograms. She’s alive. My aunt also had breast cancer. She died too young, but older than I am. These facts will not change no matter what facility I go to.

I am going to treat the administrative part of this like a mortgage transaction. When I worked in mortgage, I did my best to make sure my customers communicated to me when they were faxing something. Email attachment is even better. I’d run to the machines and pick up my documents because if I didn’t, they might go missing. Someone would grab them or they’d end up in the shred bins.

I advise anyone going through the mortgage process to just be patient, and if they ask for documents five times, just keep sending them. I had two verifications of employment when we purchased out current home. Written by the same person, saying the same thing. Ohm. Hopefully they’ll call soon while I’m on break so I can give them my family history. Again.

PS: They called. It was additional history for genetic testing. That’s always fun because my mom was adopted and most of her records we cannot get to or just don’t know. I’ve asked my dad if he still has any of her records that they were able to get when she found her birth mother. I’m not sure how much of that is around still since she has been gone since 2008.

Is as follows: Clinical Stage 1 invasive ductal carcinoma; grade 3; triple negative – HER2 negative. 2 centimeters in size.

What in the hell does that mean?

Stage 1 – caught early. They’ll maybe be able to figure out how long I’ve had it. Probably 2-5 years? Maybe?

Invasive – just as it sounds. It’s gone beyond where it should be and invading the surrounding tissue.

Ductal – it started in my milk ducts. If I’d used them for their proper purpose – feeding babies – would it have never started? We’ll never know. That’s the fun part about cancer. No one knows what the hell actually causes it.

Carcinoma – medical term for cancer.

Grade 3 – also called ‘poorly differentiated.’ The cells look very different than the surrounding cells, and disorganized and divide quickly. My cancer is scatterbrained. Just like me!

Triple negative – my cancer is negative for estrogen receptors, progesterone receptors and excess HER2 protein. Basically, my cancer will not respond well to hormonal therapies.

What is a HER2 protein? Human epidermal growth factor 2. It’s a gene that they know plays a role in breast cancer development, but is also part of healthy breast cell growth. Mine is broken or something. This type of cancer is aggressive, but usually responds well to treatment I have been told. I’ve also read that is the case. Suggested reading sites: breastcancer.org and breast360.org

What are the treatments? Based on the current size? Maybe chemotherapy + surgery. Or It could be surgery + chemotherapy. Or…? These are things that will be coming in the future.

What kind of surgery? Lumpectomy or mastectomy? We will talk through this. I’m going to do whatever makes the most sense. If chopping them off is the best bet? Ta-ta, tatas! The people who love me don’t care as long as I get better. 

I will also be getting genetic testing to look for the BRCA genes. They are BRCA1 and BRCA2, BReast CAncer gene 1 and 2 – someone was very inventive on the naming of these. Respect. This testing is not standard with breast cancers but I am not standard. I am under 40, family history, etc. and stuff.

Terrified. Angry. Ready to fight it.

I live in the United States. Part of the fight is navigating through insurance, making sure procedures are covered, knowing that I have private insurance and still have to pay the premiums every month even if I’m not working because I’m too sick.

Sure, I could make my husband go back to work to bring in money to pay bills and stuff. I don’t want that. I want him here helping me with this fight and taking care of things like being at appointments and calling the insurance company when I don’t want to and continuing to do all the little things around the house that need to be done and making sure the dogs are fed and walked. Being present if I need anything.

I’m lucky. Very, very lucky. I’m not rich, but I have enough set aside that this won’t break us. Delay retirement? Absolutely.

I’ll also be in fear of the federal government in the US passing laws that allow insurance companies to deny coverage to people with pre-existing conditions or allowing them to charge us more. I have said for several years now that I would rather pay more in premiums throughout the year so that everyone is covered and I never have to choose insurance or see a bill. Even if you aren’t sick, choosing a plan can be a pain. We gambled a little by going with lower monthly premiums. Doing a comparison it showed that even if had gone with the higher premiums, the out of pocket would be about the same.

Gamble lost.

But only because I have a family history of cancer and have been able to get mammograms since I was 29 years old. I’m 38. Forever grateful to my sister. Happy she’s still here because she found a lump and was able to get help and assistance through Medicaid. Socialized healthcare.

Stage 1. Caught early. I can do this.

The pushback I get is weird to me. I don’t understand the “I got mine” mentality of so many people here. Great! You’re successful! Many people are not as successful, but they work as hard as or harder than you. Your ability to survive a survivable diagnosis or not go bankrupt in the process should not be based on your insurance and how much you can afford to pay in deductibles and things.

I hate that this is the first thing I am thinking about. Do I go ahead and hit our savings/retirement accounts? Or do I use our home equity line? Or do I hit the credit card offer I just got for 0% for X amount of time and then pay it off later, hoping that the markets have recovered? I might do that because that card is only in my name. So, if things get out of control only my credit is ruined and I won’t hurt my husband’s credit or add debt onto our house.

This was not part of the plan.

We just paid the car and home insurance for a year. Property taxes are due in September. Mortgage, utility bills, student loan – I could probably defer that – food, gas… copays.

Again, I’m lucky.  I could wipe out my debt by hitting my retirement. Except I want to retire someday. I want us both to retire someday.

This is the American way.

It’s not the right way.