Good news and the cost of cancer

First of all. MY PET SCAN IS CLEAR! aka there are no signs that the cancer has spread to any other organs. It’s still there in my boob and lymph nodes but I’ll tell you what–if you want one cancery boob to seem as delightful as Thor in a G-string, spend a a few days pondering a stage IV situation.

So, yeah. I’m doing the happy dance right now. And I have to give massived kudos to my oncologist Dr. Cappuccino (who henceforth will be known simply as “Dr. Cap” for Captain America because he’s going to save my life) for sending me a message at 11pm last night to let me know the good news. Let me set the scene for you: After coming home from the PET scan, I pretty much went to bed. I was too worried and freaked out to function at all. I know that sounds dramatic, but aside from the BRCA-negative, I have flunked every test I have taken on this journey. This week I read two accounts of women who started with my exact flavor of breast cancer (ER+/PR-/HER2+) and were relieved it was caught early and did everything they were supposed to…and yet. Their cancer spread and they’re dying.

So I’m in my bed. The house is quiet. My husband is snoring beside me and the cat is sleeping on my knees. I can’t sleep because my mind won’t stop spinning horror scenarios. I’m telling myself “If I can just live another 10 years the kids will be okay. They’ll be 33, 29, and 15 and they’ll miss me, but they won’t need me.” I’m pondering getting up to take a Tylenol PM, but don’t want to disturb the cat. I mess around with my phone and I see from an email that I have a new test result. I’m not waiting on anything except the PET scan and I quickly log in to read this message:

Hi,
Pet scan does NOT suggest any areas of cancer spread outside the breast region.

– Dr. Cap

I shake my husband awake. “Honey, honey. It’s clear. The PET scan is clear!” I shove my phone in his sleepy face.

And there was much rejoicing.

So, now back to the task of kicking this cancer to the curb. I have a post-op appointment tomorrow so Dr. Boobcutter can check my Mediport (which itches like a motherfucker, which I guess means it’s healing?), then the MRI-guided biopsy on my left boob on Monday, then chemo begins Tuesday May 5.

I’ve talked about insurance and approvals and such, but I haven’t really mentioned the costs of the care I’ve been getting. Let me be crystal clear, I am not complaining. I’ve paid very little out of pocket and Tricare has approved every single thing my medical team has submitted. But let’s take a look at the cost of breast cancer for JUST ONE WEEK:

April 22 – ultrasound guided biopsy of lymph nodes – $4,151.22
April 23 – surgery to install Mediport – $17,264.98
April 23 – anesthesia for surgery – $949.74
April 24 – echocardiogram – $2,166.00
April 29 – PET scan – $5,050.50

That’s almost 30k in one week! And I haven’t even started treatment yet!

Lymph Nodes, PET Scans, and Lies

I wanted to write this post last week, but was feeling too Percocet-y. And now I find that I am reluctant to put words to it. I don’t have any especially staggering news to report. As expected, the cancer has spread to my lymph nodes. Four of them, according to Buffy the Cancer Slayer. Which is a weird thing because if it was three lymph nodes, I’m safely still in Stage 2, albeit I get a slight bump from 2A to 2B.

With four bad nodes though, I may be upgraded to Stage 3. No one with any authority has re-staged my cancer, but I’ve spent quite a bit of time consulting my books and the almighty Internet. Honestly, the stage isn’t going to make a difference in my treatment (I don’t think) because we’re starting with the big guns (chemotherapy) in the first place. Will it be more likely that I have a mastectomy than a lumpectomy? I don’t know, honestly. I guess some of that will depend on what, if anything, shows up in my left boob, which hopefully will have an MRI-guided biopsy this week. And if we’re tracking the fucks I give, I have none to spare for my rack. The ladies served me well and I’m totally okay with being rid of them if it keeps me alive longer.

I’m rambling, I know. Here’s what’s gone down since my last post:

Thursday I had surgery to install the “power port” in my chest. I was given the choice between “twilight” anesthesia or “knock me the fuck out” anesthesia and I selected door number two. Boy was I glad I did, because a forty minute procedure ended up taking two hours. Apparently I have a very robust collarbone and so Dr. Boobcutter had to dig around quite a bit to find a good path to my vein. Anyway, I guess all went well. I went home that afternoon with an ice pack and a Percocet prescription and a sleepy head. For the next twelve hours I felt dopey and headachey and kinda barfy. And I’d only been home an hour before Buffy called to give me the word on my stupid lymph nodes.

Dr Cappuccino, my oncologist called just a little bit after that. He said that he and Buffy and Dr. Boobcutter had been conferring and they’d decided that I should push back chemo a few days so that we could get that MRI-guided biopsy on my left boob and a PET scan. He said that some other people were pushing for a bone scan as well, but he was on the fence on that and thought the PET would be enough to see what’s what. “Hang in there,” he said. “We’ll get you through this.”

That afternoon at school my daughter was crying on the playground so her friend Jasmine took her to the “recess lady” who, when my daughter sobbed “My mom has cancer!” took her to the school counselor. There she got some stickers and drew this picture.

It says "Cancer is 1,000 pieces of poops." — It says “Cancer is 1,000 pieces of poops.”

Is it weird that I didn’t get a call from the school? Is my kid high-maintenance? When she cried again that night “I wish you never had cancer!” I decided that I’m out of my depth on this one. I left a message with the oncology social worker to see if there is a support group or a therapist I should be sending her to.

Friday I spent most of the day in bed except for a trip back to the hospital for my baseline echocardiogram. The drugs in my chemo cocktail that target the HER2 antibodies are known to play a bit fast and loose with the left ventricle, so we needed to check mine out so we can track any damage (which is temporary in the majority of people). So of course, I’m sitting there thinking…every fucking thing they’ve checked (minus my DNA, which does NOT have the breast cancer gene!) has been bad news. So I’m like “does my heart look normal, ha ha?” And the tech of course isn’t able to make a diagnosis–only the doctor can do that. So that freaks me out and I become the Liz Lemon of the echocardiogram. “Hey look, Gunny, I DO have a heart!” “Is that my aorta or the sarlacc pit?” Ba dum tish.

Then all weekend I looked up stats about how that one extra node effects my prognosis. And I get shit like this.

What do I believe? Who do I trust? Am I being alarmist? Probably. But there’s enough concern to look at the rest of my body for more cancer.

So last night my son was over for dinner, milkshakes and Game of Thrones. And when the show was over and he was getting ready to leave we were chatting and I tell him chemo now is going to start on May 5 [insert joke about tequila in the IV for Cinco de Mayo] and he laughs and I follow with “Of course, that’s because they found more cancer and I have to get a PET scan har har.” And Allison, who is clinging to her brother’s leg like a tick–and who I apparently failed to notice–says “They found more cancer?”

…

“No,” I said. “No, I was just kidding.”

What stage of cancer involves lying to your kids?

April 27, 2015 6

Fear – The Real F-Bomb

Normally, I would wait until I know more before making this post. But, this–the waiting, the not-knowing–is a large portion of this cancer dance. So, today, I went to the radiologist to do ultrasound-guided biopsies of stuff that showed up on my breast MRI a couple weeks ago.

No biggie, I thought. I’ve done this before. I know what to expect. And I even had a prediction (left boob was a false alarm and lymph node in right armpit would probably be cancery). Here’s what I didn’t expect: it wasn’t one node they were looking at it was, according to two different techs “a handful” or “three or four.” Can you fucking count? I realize that techs usually can’t tell you anything because they aren’t supposed to make a diagnosis, but JEEZ. Is it five? Is it three?

Okay, so they’re looking at more than one node. I can deal with that. But here’s where it got freaky. One of the lymph nodes under my arm is GINORMOUS. It’s 4.4 cm. That is almost twice the size of Turdy the Tumor. Or at least his size when we did this ultrasound jazz back in early March.

Dr Movie Star comes in to do the biopsy. We talked about Burt Reynolds and that cheesy killer bees movie that culminated in the Super Dome.

Was he going to stick a needle in all the suspicious nodes?
No, just the big one.
If the biopsy comes back cancerous, is it a tumor in my lymph node?
No, it would be a malignant lymph node.
Since this blob is bigger than the one in my boob is it possible that the cancer started there and moved to my boob?
It’s not impossible, but it’s not probable. It usually starts in the breast and moves to the lymph nodes.

Okay, so he did the biopsy and I got to look at the little wormy core samples that he’ll send to the pathologist. They don’t look evil.

My left boob thing? Dr. Movie Star couldn’t find it. Hooray, said I. Well, that means we’ll need to do an MRI-guided biopsy instead. Boo, said I. He also mentions that if the biopsy comes back bad (and I am fairly confident that is the case, because it’s extremely common for cancer to spread to nearby nodes) they will probably do a PET scan or CT scan to see if cancer is anywhere else in my body. This is when I saw the Eternal Footman hold my coat and snicker. And in short, I was afraid.

So yeah. I know I’m supposed to be all positive happy snappy blah blah bullshit, (and Oh! You should have seen my performance today. I was in full-on Trixie Mode. Cracking jokes, making small talk, calling everyone by name and telling Dr. Movie Star his techs should all get raises. Aren’t I a firecracker? Don’t I just have the BEST attitude, bless my little heart.)

Meanwhile, all I can think about is worst case scenarios. The cancer is everywhere. Every fucking where. I’m going to die. They’re going to do a bunch of scans and they’ll change my stage from 2A to 4, which as Dr. Boobcutter put it, is “game over.”

Bright side, bright side, bright side.

1. I’m starting chemo in six days. It’s going to work on killing cancer wherever it may be.
2. I don’t have any symptoms (but what about those headaches? Or how my back always hurts? Shut UP.)
3. I have an awesome medical team that is proactive and sympathetic.
4. I have health insurance. Yes, they may be slow, but Tricare has approved every single thing my doctors have ordered.
That’s all I can think of as far as the cancer. The other bright sides? It’s sunny today. I have two episodes of Mad Men waiting for me to watch. All three of my kids are healthy. I have amazing friends and family. I have this blog: a place to dump my fears and anxieties. The internet is forever and this blog may be my legacy.

April 22, 2015 8

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