Cancer Can Be a Catalyst for Change

"Cancer is not something you say thank you for, but it can be a catalyst for a change for the better."

That, more or less, was a thought shared in the memoir of a cancer survivor that my mom sent me. Because it mirrors my personal experience that things I treasure most in my life came either directly or indirectly as the result of something really crappy.

For about a year now, I've been feeling like I need to change my life in some way. Wasn't sure exactly what though.  So when I read that idea, it really jumped out at me. Tonight, as I expect to hear tomorrow the answer to the question as whether or not I have a chance of my cancer being cured, it seems even more comforting… and a bit exciting.

"Have a Great Weekend", They Said.

Let's get the whining out of the way first. I still don't know if the cancer has spread to other parts of my body (making it the incurable stage of cancer).

Also unknown is when is my first day of chemo. The answer to that is contingent on some more tests coming back because those results determine my particular "cocktail of drugs." I don't know when it is going to start or exactly how often and for how long either, for the same reason. I did find out I'm getting this groovy little device called a "Mediport" this next Wednesday.

It is disc about the size of a quarter that is surgically placed in my chest just under my skin with a tube that connects to a large vein. Chemotherapy meds are given through a special needle that fits right into that little sucker. Bonus is that blood can be drawn from same port, which will be happening quite often during my treatment. The images of being a human pin cushion have been eliminated.

Now to move onto the non-whiney portion of this post.

As my friend next door as well as my surgeon told me, my oncologist is awesome. He just oozes with gentle strength and keen intelligence. You can see the compassion in his eyes as well. Kinda everything you want in a doctor. I seriously dig the slight Indian accent too. He is in complete agreement with my surgeon's recommendations regarding treatment, so that is good.

He explained that yeah, I have a super aggressive type of cancer. It probably wasn't even there 2 months ago. (I had worried my procrastination of my mammogram I screwed myself.) Because it's inflammatory, I can see the changes that happened just in a week to my breast just looking at it.

Which, on the plus side, because it is starting to look kinda gross the last couple of days, not so sad now to think about it being cut off. Having it replaced with a new one rather than having what I have now is actually preferred.

The way they treat cancer with chemotherapy has changed radically the past 25 years. There are so many, many medicines that target all the different aspects of a person's cancer. Which is something I also hadn't fully grasped. It's not just the kind of cancer that determines what drugs you get, but also these variations to what is happening on cellular level that vary from person to person. Which is why it's important that he get the results from this one last test on the sample taken on biopsy called a FISH test. They also want to make sure there's not something going on with a kidney or my heart that a certain therapy might make worse, which is why I spent my day at Reston Hospital going from lab to lab.

Speaking of my day at Reston Hospital, when you walk into the lab that you didn't book an appointment or is closing soon, upon hearing (as instructed) "I have inflammatory cancer and my doctor said I have to have these tests done ASAP", instead of getting more put out, they become extremely nice and I get right in. Thanks Cancer!

And in the middle of my marathon of meeting with doctors and various tests I had that PET scan, which turned out to be the oasis of my day. The two women who conduct it were so jovial. Sure, you're getting radioactive sugar injected into your veins (it apparently attaches to the cancer cells so you can see if it has spread beyond my nodes) but these ladies made that even pleasant. Then, unlike that MRI machine, the CAT scan was downright pleasant to me. I got wrapped in blankets and inserted into the tube where it was just a quiet hum. I fell asleep and woke up feeling so much better as a result.

I know those ladies are the ones who know if the cancer has spread but aren't allowed to tell me so I didn't bother to ask. Also, tried to get out of there ASAP so as not to start analyzing their behavior towards me now that they know. But they wrote a little note at the bottom of some paperwork that I saw later that afternoon: "Have a great weekend!" My mind started churning about what that meant.

But before speculating lead to a trip to Crazy Town, I decided that I really should just have a great weekend. Aside from my weird looking boob, I feel great. I have been blessed with so much that I am losing track! So thank you PET Scan ladies, I will have a great weekend.

Limbo Land Train Is About to Leave the Station

Today was a hard but informative day. Luckily I brought with me one of my best friends who not only goes back a couple of decades but also has a freakishly good memory. Which those who know and love her sometimes hate that she can recall every word said. In this case, it was a gift for sure.

 Met my surgeon who is awesome in that she explained everything very thoroughly yet was still sensitive to my feelings. Plus, I knew I had the right one when I started to show her my breast while she was asking the various diagnostic questions, "Whoa, hold off on whipping that out, let me date you first."

I have a rarer type of cancer called "Invasive Lobular Carcinoma" that is "inflammatory" (only 1-2%  cancers) and likely "Stage 3B".  PET Scan tomorrow will rule out or let us know if it is the treatable, but incurable kind that is Stage 4.  I have so much detailed information that explains what all that means, my head is about to explode.

But in practically speaking, I have to hit the ground running in terms of treatment and it's going to be marathon (18 months, give or take). My oncologist appointment got moved up to tomorrow morning from Tuesday afternoon so if I had any doubt, that eliminated it.

First up in the plan is 4-6 months of chemotherapy before surgery. My kind of cancer grows so fast it's best we try to stop the growth and ideally shrink it prior to trying to remove it.  I will know more about when chemo portion tomorrow. But for now, I'm expecting that sometime between October and December, I'll have the mastectomy. Then a month later will be the start of 7 weeks of radiation therapy. 

Six months after that.. reconstruction surgery. And here's a little silver lining, they will reconstruct my breasts using fat from my belly! So if I can get through this, I not only get to live, I'm going to look fabulous! 

Confession though, I did need about two hours this afternoon to wallow in a pity party. But then I remembered "Operation Don't Freak Grandma Out" so the kids and I focused on doing some cleaning certain parts of the house that if left as is,  she'd just shake her head and wonder where she went wrong in raising me. 

MRI: Watching "House" Isn't Enough to Know What to Expect

I thought I had been totally prepared for the MRI I had this afternoon, right down to taking a Xanax as recommended. (That probably helped!)  Plus, I loved that show "House" where some of the best scenes were between the doctors conducting a MRI on the patient who in about 20 or so minutes would be miraculously saved.

What I wasn't prepared for was every time I was told not to move (Very Important That You Don't Move), my nose or ear would itch. I expected it to be noisy and in a confined space, but didn't realize the sounds would sound like some sort of alarm and intermittent, so would startle me in the beginning. Trying not to jump when startled was hard enough but keep breathing calmly even harder.

No where did I read that you'd feel this weird sensation as it was taking images using the magnetic technology.  Not really painful, just this almost vibration feeling. It was actually uncomfortable in that spot on my back where I have a little degenerative bone disease in my sacroiliac joint.

Hardest part was not to ask the technician to describe what she saw and her experience what it is means. I will wait for the meeting tomorrow with the surgeon who will go over everything with all the various tests (biopsy results, mammogram, ultrasound and now MRI) in hand.

Limbo Land

It turns out that there can be this place between diagnosis and prognosis that I have dubbed "Limbo Land". I know I have cancer, and it's the "invasive" kind as the node biopsied has cancer. I know that I will be having a mastectomy, chemotherapy and radiation.

 I don't know yet my stage. According to Laurie (my "Oncology Navigator"), I am not Stage 1. But whether it is 2,3 or 4 is up in the air until tomorrow. For those new to this world as I was, all cancer sucks. Stage 4 cancer sucks the most as that means it has spread to other parts of the body, which decreases the survival odds.

 Not that I don't understand that those government issued odds are based on the entire population of women in the United States, it includes senior citizens, women who don't have insurance or access to the top medical professionals, or even nutritious food. It incorporates women who don't follow their doctor's orders as well as those without a strong support system. None of that applies to me. I know if someone collected survival statistics that match my demographic particulars it would be a different number. It is still hard not to keep thinking about "what if I'm Stage 4?"

I also don't know yet when the mastectomy will take place and when chemotherapy will begin. Because the area caught on the mammogram seems large (the MRI I'm doing today will pinpoint the size), they may try to shrink it via chemo then cut it out.

Tomorrow though, my answers to family and friends about what is going on should cease to be: "I don't know." I will be able to start planning accordingly. As much as I've been frustrated of having a week in limbo, there's been a degree of peace in it because other than assembling my medical team and alerting family and friends so they can circle the wagons, nothing I could do. Even when I start to worry about the possibly of it being Stage 4 this past week, I could calm my worries, with a "you don't know that yet."