How I got here from there. Part 8 — stage 4?

I last left off in this story after I had the PET/CT and was waiting for the results that would come the next day. They did. I got a call from Dr. Johnson late Friday afternoon. He was very kind. He said that the results hadn't been fully interpreted yet, he wanted to study them and so did the technician. But preliminarily they found "reactivity" on an area on my left lung, and a few places here and there near some bones. He was going to schedule me for some x-rays to check the bone areas on Tuesday. I was to go through and get the port installed on Monday, get the x-rays on Tuesday and report for my first chemo treatment on Wednesday. He was more concerned about the bones than the lung area. Not totally understanding the implications—I was more concerned about the lung area. He minimized my concern there saying that the chemo would blast that out of there... he wanted to make sure my bones stayed strong so I could function. He used the term I have now come to understand better "add years to your life."

I pressed him a little more on that... I asked him if he could "fix this?" He said yes... then threw in that "add years to your life..." phrase again. He went on to explain that the drugs he uses to fight cancer now are tremendous and he has ones now that he didn't have just a few years ago and new ones are being worked on still. He fully expects to "fix" this for me. I was very relieved and happy to hear that. Hearing the compassion, knowledge and understanding he has was very comforting.

That following Monday I went in to have the port installed, a slightly creepy procedure, but one I am now happy to have. They thread a small tube into one of the main lines into your heart and leave a small "port" to it just under your skin. That way when you get the chemo they just poke into that port and they are right into your system. I find the idea of having something foreign implanted in your body strange... breasts, butt cheeks, cheek bones? How do people do it?

Lee came with me to surgery. It was funny. First they thought he was my husband and then they thought he was my younger brother. Ugh. I kept thinking how I had to dye the damn grey out of my hair... I also could barely breathe. I asked the nurse for oxygen. They got me some, but not without a little hassle.

Once again my BCM, Wanda, came to help. I told her of my breathing concerns and she suggests they can drain that fluid off while I am there for the port. I love this idea. She starts asking around to get it arranged.

Finally, I get the ride down to the operating room. This is surreal. It's the first time I've been in an official hospital operating room. Other than the c-section to deliver my son, I've never had surgery. I can't help but compare it to TV. Damn Scrubs TV show... now I picture them doing all sorts of crazy things. Shortly the surgeon comes in—the now very cool, Dr. Alder. He seems in a happy and breezy mood... kind of like "oh hi, we are doing this today eh? No problem... big smiles..." He is reassuring. Again, I ask him about doing the lung tap. Seems to be the first he heard of it... but he says "sure, no problem."

He sends someone to get my last lung x-ray and the proper paperwork for me to sign. I'm already getting a little woozy. Someone is prepping my shoulder for the port. Dr. Alder is explaining to the nurse that he is going to do the thoroscentisis and asks her to prep for it. She says "what? what's that? I've never done one of those before..." I want to very badly to say, "Hey! Never say that in front of a patient..." but I can't, I'm already asleep.

Next thing I know I am being hefted around from the rolling bed to another stationary bed for recovery. I can hear people now. I hear Lee laugh... I fall back asleep. I hear Dr. Alder say "we took 2 quarts of fluid off her lung." I can speak enough to say "2?" Yes 2. Then I fall back asleep. I hear Dr. Alder say to someone "she has stage 4 breast cancer..." I want to very badly say "I don’t! What the hell are you talking about?" But I'm asleep again. Then I hear, "we may want to keep her overnight..." Next thing I am awake for is pain killer going in my arm. Yes... please... more of that.

A little while later I've recovered enough that they decide I can go home. A little coughing from my now freed up lung. I'm anxious to be home. What happens next is a kind of a comedy of errors. I don't see what I look like when I leave and I am covered all over with that reddish, sterilizing gunk. It's now dried to look like something horrifying. We have a short amount of time to race to the pharmacy to get my medications before they close.

Lee drives a ridiculously small car for such a tall guy. He races in and out of traffic like he's James Bond. We make it to the pharmacy with 10 minutes to spare. Their drive in window is already closed. He has to go inside. I ask him to buy some wet wipes or something to clean me up before I go in the house. He brings out medications and some tiny alcohol swabs. I take an alcohol swab sponge bath the rest of the way home.

Once I am finally in my own bed, relaxing and recovering, it all flashes back to me... "stage 4 breast cancer." No one has said that to me before I overheard Dr. Alder say it. The next opportunity I have, I Google it. I am it. I have stage 4 breast cancer. The worst.

Of course I am compelled to end this blog there and leave you in the moment of drama. But I won't. I already know what that evokes. Like the email I got saying "I just heard; is it too late for me to see you?" or the "I'm praying for you to pull through... you have so much to live for..." I can't take those; especially if I already know that you are not a person that prays but you think that is what you are supposed to say.. lol. So here is the real deal:

Yes I am stage 4. But stage 4 is a very, very broad category. Here are the stages: Stage 1—means you have a very small lump in just your breast. Stage 2—means that the cancer has also made it's way to your lymph. Stage 3—refers to size... it's a bigger tumor and it's in both the breast and the lymph. Stage 4—means some cancer (be it a lot or a little) has shown up outside the lymph and/or breast area.

I also learned what "reactivity" means. Cancer responds to sugar. It sort of goes crazy when it gets it. You fast for the test, and then they fill you with glucose and photograph your body to see what is "reacting" to the glucose. A few cells having a party with the sugar doesn't make a tumor.

So stage 4 covers everyone from having one little tiny spot of reactivity from cancer somewhere outside the breast/lymph areas to someone that has it in several major organs. It also covers those who are young with no other conditions and those that are very elderly with many other problems. I'm an otherwise healthy 45-year-old woman and I'm in the same category as a 90 year old with diabetes, high blood pressure, cancer tumors in 3 or 4 organs and who is bedridden. The statistics are misleading. And once you are a 4, you never go back down to a 1 or 2 even if you are cancer free.

Women in my situation are living and living cancer free after treatment. The difference is that I will never get that "you are cured" diploma that stage 1 women get. I will always have something to look out for and guard against. Yes, that makes me in the broadest interpretation of the word "incurable." However, I see it in much the same way that many chronic conditions are "incurable." It's something that I will live with and watch and manage forever. Much like a diabetic who takes medications daily and watches out for worse—I will do the same.

I find that very little is out there about women in my situation. It's sort of annoying. We hear a lot about the "tiny little lumps" that women get removed with a sign of relief... we hear about the actress that hid her lumpectomy—but then admits it when she has a movie to promote... but not much about women in stage 4. Most of the public has the impression, and rightly so I suppose, that stage 4 is to be followed with the question of, "How much time does she have left?"

The impression is that either it's a two week recovery from a lumpectomy or death. Not a lot of in-between exists in peoples’ minds. I've gotten emails from people saying, "Oh I'm sure they caught it early and you will be fine soon, my thoughts and prayers are with you." Um... what do you say to that? When I went in the other day for my thorocentisis, the technician said, "Oh you have cancer... you must have had a little lumpectomy and you'll be fine soon." Um... not exactly. I explain my course of treatment to her and she sort of tilts her head to the side and says "oh."

So I won't be well in two weeks, but I'm not going to die. Of course we all die—what I mean is that I'm not going to die soon. No one has given me "____ time to live." I plan on being around for a long time. What happens now and how long it takes to get me back to something that resembles normal? I'm not sure. I'm going for the ride.

I think this blog catches me up to present day. I'm going to keep up as often as I can with what is happening and how treatments are going.

I've been asked a lot about why I'm blogging. Basically I have a lot to say. But I haven't a lot of free time to say it. Between running Jungle Roses and taking care of my son and my now new full time job as a cancer patient... I don't have much spare time.

I am also guarding my son. I can't have phone conversations about how Mommy is or isn't going to live in front of him. He is freaked out enough as it is... he doesn't need to hear more. He isn't one of those kids adults can have a conversation in front of and the kid just tunes it out. He listens, pays attention and will quiz you later. He's also had his share of death already. My father's passing was very, very hard on him. If he thought Mom had a chance of dying... oh man... I can't imagine it. So I'm asking everyone around me to please be understanding. I will catch you up in my blogs as best I can.

I welcome your emails, questions and support.

My port is like the one on the left. Now that it has healed it looks about the size of a nickel, only fatter… and it kind of floats around under there.