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.

It’s really just a bunch of dead cells hanging off your head...

Today, while I was waiting to get my follow up chest x-ray, (and btw things seem okay, a few days I should be much better) a very sweet older woman who works as a volunteer at the hospital—mostly telling people where to go for what—approaches me. She very gently says "I probably shouldn't ask you this... but are you going through chemotherapy?" I tell her it's fine to ask, and yes I am. She says "is it really that hard to lose your hair?" Ummm... now she must be at least 80, so I'm going to be nice, and I can tell that it took a lot of courage for her to approach me, so even though I really want to say "no the hair was easy... it's the cancer that's hard," I don't.

Instead I say, "Honestly it seems harder for other people to see me lose my hair than it is for me." She says, "oh," and then goes on to explain that her grandson had to have chemo and he was very, very upset when he lost his hair and she just wondered if it was really that hard. I tell her that it's probably harder for some people than others. She then says, "He was only 19 at the time and he had a really hard time with it, but the second time he had to have chemo he was 38 and it didn't seem to bother him much at all." I explain that maturity probably has a lot to do with it—at 19 your world is different than at 38. She also looks to me like she is wearing a wig of very thick black hair, when she probably is white and thin up there herself. That's ironic. Then, gratefully, I got called back out of the waiting area. She slightly tears up as she says, "thank you and good luck." Odd eh?

So I went from nearly waist length, ridiculously thick hair to near baldness in about a week and a half. Sure it was a shock that first day when handfuls came out. But I didn't cry over it. I can honestly say I don't care that much. My only regret was that I didn't just cut it all off at once into a pixie, Hallee Barry thing. That would have been easier to manage. But, I kept hearing about people who didn't lose their hair and you might not lose all of it... blah, blah, blah...

I can see now that people stare when I'm in public. I always wear a du rag or this soft hat thing when I'm out. Hey... my head gets cold. But people stare, or at least look and acknowledge in their minds that something is going on there—and then quickly look away. Some smile with a knowingness. I'm used to being stared at—although ironically, before it was because of my massive hair, boobs or height. Hey I take up space on the planet in many ways... people notice. But the stares are slightly different now. I try to smile back because I know they don't expect it. I'm that way...

I also realize that it makes it more "real" for other people. It's one thing to be told "she has cancer," it's another to see physical evidence of it. Plus, wasn't that always the dramatic moment in the cancer movies? We've all seen the scene—ohhhh, now the patient is bald, they are really sick. Cue the music and the tears... but to me it's a sign of drugs working. The chemo drugs kill rapidly growing cells. Cancer is a rapidly growing cell, so is hair. It's working.

I'm surprised at the amount time I save not having hair. It cuts at least 30 minutes off my morning routine, and I was not a high-maintenance hair type. I was just wash and wear. No blow dry, no curling iron, no straightener with lots of goop. And still that's a lot of time. I'm sort of fascinated by it. How much do those girls that get that bubble-headed hair thing going on spend? Amazing. Oh yeah sure, I get it. Hair is part of what attracts a mate, gets us good attention, good jobs, good whatever... like having a nice car or no beer gut. But really does it matter that much? In the end; we are not our hair. I'm still me.

My son had a little trouble with it at first. He didn't like to see me without a scarf on my head. He still doesn't. So I try to wear a scarf or hat all the time around him. One night while I was getting him to bed he said "Mom, when people are bald I have a hard time telling if they are a boy or a girl." So I said, "do they have boobs?" This made him laugh and he then smiled and said, "Okay that will work." Then he said, "I've never known anyone that was bald Mom." I said "hmmmm… yeah, I guess that's true we really don't have anyone around us that is bald." He says "yeah but now I do... YOU Mom!"

Last night Lee emailed me a photo of his new shaven head. He and Linda decided to go buzz cut to show their support for me. That's so truly cool. Linda let my son do hers. I will add some photos of them to this blog later. Right now my son is bugging me to use the computer.

Linda getting the buzz cut from my son. And let me tell you he doesn't take that bink out for just anything.

After
Lee. This pic worries me a little... I'm afraid it could end up on some weird dating website. I found several such photos of Nate on my computer... hmmm... he may have to retake this with a shirt on... roflmbao <- rolling on floor laughing my bald ass off Gotta love these guys don't you? Thanks.

I’m one of the less than 1%?

I had another thorocentisis done today. If you have yet to read what that is in my blogs, they stick an alarmingly long needle in your back, between your ribs, and then insert a narrow tube to drain fluid off your lung. Picture a really sharp, narrow drinking straw. It's about the same length, but much thinner. It's rather painless, although annoying, to have done. And, since I can't see behind my back, I can only imagine how freakish that must look having a tube sticking out of your back with fluid running out of it—like siphoning gas out of a car tank. This is my 3rd time. The first time was with Dr. Abdulla in that "Jiffy Lung Lube" office of his. The second time happened while I was under sedation. Today I thought it was the best yet.

It was done by two radiology technicians, guided by ultrasound, nearly pain free, and only just barely annoying. Other than some harsh coughing at the end, it was a breeze. The young radiology women that did it were nice and easy going. Not bad...

They took another liter and 1/2 off of my left lung. It took about half and hour and they entertained me with stories about the mock disaster drill the hospital had just run the day before that included a smoking fire.

They sent me for an x-ray after the procedure. There are some risks with the process. One is, of course infection, but they sterilize etc. and that just never happens. The second one is what they call "pneumothorax." Where they somehow puncture or injure the lung and it causes an air pocket. Basically a hole gets poked in the lung and when you breathe the air then escapes the lung into the pocket area where the fluid now is... but don't worry... pshaah... happens less than 1% of the time… sign here to agree that you know these risks and want the procedure anyway.

I got the x-ray; the x-ray girl said I was "free to go." I was thrilled. That was easy.

We got about half way home when my cell phone started ringing. I saw it was the hospital and chose not to answer. I was feeling too good to hear anything from them. I got a panic message from the radiologist that did my procedure. I was one of the less than 1%. "Would I please call her ASAP? They let me go before she saw the x-ray, I have pnemothorax."

Bummer. I called and told her I felt "fine." She had already panicked and called Dr. Johnson's office, whom, I am guessing, gave her my cell number to try and reach me. She told me they usually resolve themselves in day or so, but could I come back for an x-ray in 4 hours? I told her I couldn't imagine that it wasn't already fine because I felt great, no coughing, nothing. So she agreed that I could skip the 4 hour x-ray but had to come back in the morning for another x-ray to make sure. Sigh...

Then I got a panicked call from a nurse in Dr. Johnson's office. I told her the same—I felt good, really good. She made me promise to go straight to the ER if I had any pain, a rapid heartbeat or started coughing badly. I promised. And please come and get an x-ray in the morning.

So it's now about 9 pm and so far, so good. TC just took our son to the store to buy meat for the grill. Yep, he is going to grill in the rain... lol. It's tough to get my son off the computer... so I took the opportunity and looked up pneumothorax on the 'net. This is not something I want. But I can tell by what I read that mine will be okay or I would be a lot more uncomfortable than I am now... whew.

You know you want to see it....

It's already growing back. Although, it may fall out again in a couple of weeks.

How I got here from there. Part 7 — The Trailer

The day after the big meeting I was scheduled for a PET, a CT and that head MRI. The PET and CT were to be done at the same time in that "trailer". I was still mystified by what that trailer could be... and I really didn't want to do that MRI. I called Dr. Alsup and pleaded for some Valium to get me through the MRI. He granted my wish and also offered up some more Lortab... bless him. He told me to take the Valium about 1/2 hour before the MRI and of course that meant I needed someone to drive me to and from the hospital.

Linda recruited Katy. Katy is a young, beautiful girl that looks more like she belongs as a contestant on the bachelor, than running me around to medical tests. She is engaged to my Nephew, Brody, Lee and Linda's last single son. They are getting married in June.

Before we left Katy had to grab a ciggie. I know I'm shocked! People still smoke?? I take the chance on the way to the hospital to give her major grief. "l have cancer—look what I'm going through? And you are doing something known to cause it?" She brushes it off with a "yeah, I know I should quit... and so should Brody... blah, blah, blah..." Her mind is really on her wedding though as the topic quickly changes to how purple are the purple flowers she picked out...??

Finally we arrive at the hospital and drive around looking for a trailer. I see nothing like what I imagine. We park and dash inside to find Wanda. Wanda looks at me like I must be the silliest woman on the planet as she walks me to the window and says "it's right there..." Oh. It's a semi-trailer. I saw it but I thought it was delivering food or something...

I approach the trailer and meet Ahmed. Who will forever be known to me as "Prince Ahmed," because that is what he turned out to be... the most caring medical professional I have met in a long time. As his first act of kindness he shows Katy a reserved parking space where she can put our car, so as not to make us trek the usual block from the parking lot.

Once inside, the trailer is crammed full of equipment. One end has two recliners separated by curtains, in the middle is a bank of computers and the other end has the machine. There is barely room for two people to pass by the bank of computers.

He sits me down in one of the cushy recliners and I explain that Katy was probably going to knock on the door because I thought she could come in with me... he says if she does he will tell her to wait inside the hospital. Then he starts asking me how I prepped for the test. What did I eat? Etc. I can tell he is a little miffed when I explain that "yes, I fasted as I was directed and ate dry toast like they said about 2 hours before." I can tell he didn't want me to eat that toast... lol. So I didn't tell him the pieces seemed small so I had two... I also had to drink two 16 ounce glasses of water within the last 2 hours, which I had done.

He mixes up a concoction for me to drink... more liquid (something that sort of tastes like raspberry chalk). And then as he gets ready to inject the stuff into my veins... he asks, "which side is... IT… on?" I say, "oh the cancer... it's over here." He visibly shudders and says, "I don't even like to say the word... don't say it... I hate it... just tell me where it is..." I'm stunned by this, and I instantly like him. I have been trying not to give my cancer any sort of validation since this started and finally here is a guy that gets it. He thinks like I do. I don't want to validate it because things that don't have validation tend to disappear more readily don't they?

The injection starts and it dawns on me that Katy hasn't appeared. I say something about that and he says, "No nobody has knocked, would have heard her." So I tell him, “ah well, I was giving her a bad time about smoking on the way up so she may have gotten tired of listening to me." He gasps, "She smokes? How old is she?" “I don't know, pretty young, 20's... she is engaged to my nephew." He shakes his head and says, "You know I see more and more young people in here with lung cancer—people in their 20's, 30's. I mean a lot of them." I ask him why he thinks that is... he says, "Everyone knows those guys in their 80's that smoked a pack a day and didn't get cancer, but it's not like that anymore. Young kids are getting it now. I think it has to do with what's in our air. You know it's different than it was when those old guys started smoking. Now there is pollution and I think the lungs can't take the pollution and chemicals in our air and the smoking. Those old guys had clean air when they started smoking... I see it so much, I think that is why."

How alarming is that? I make a mental note to tell this to Katy on the way home.

Ahmed then closes up the curtains around my recliner and tells me to relax for about 20 minutes, I actually kind of doze off. A seemingly short time goes by and he opens the curtains to wake me. He says, "Now I need you to go to the restroom and then we can start the test." Okay. Yes, I need to pee... wow... all that water and then the raspberry stuff. Oh wait, there's no bathroom in here? Right he says. "You have to go in the hospital." My eyes get wide. Remember I can barely walk a few paces without gasping for air, and I have to pee—major. I realize the hospital bathroom is the equivalent of a city block away.

He says "don't worry, I'll take you..." He pulls out a wheelchair, helps me in it and covers me protectively with a blanket. Then he starts on this crazy journey that seems surreal enough to be in a movie. Down from the trailer, across the parking lot, through a service entrance, up a freight elevator to an unmarked door. I'm giggling and amazed. I ask him, you have to do this every time? "Yes," he says, "And before I took the sign that said "restroom" off this door, my patients often had to wait for someone to get finished inside. So I just took it down one day..." This is the first of many times I find myself saying, "you are a prince, Ahmed."

When I come out of the restroom I am full of questions. "How do you do this in the snow? I mean this is Utah, we have wicked weather here. Do you tent this off or anything?" This gets a laugh from him and he says, "No we put on a lot of blankets and run like hell."

Why the trailer anyway? Can't he get an office? He explains that just the trailer and its equipment cost 3.5 million dollars. It's expensive medicine. In order to get a department he has to first kick one out—the hospitals are full. Or they would have to build one on for him. In order to do that he has to get to a point where one hospital would have about 10 tests per day. And he's not there yet, plus that's the kind of thing he doesn't want to wish for... so he travels from hospital to hospital. A couple of days here, a couple of days in Salt Lake and so on...

He's a maverick. I just notice the scuffed up cowboy boots and jeans he wears under his lab coat, and even that fits him.

He gets me inside and offers me yet another raspberry shake. Says to drink it and as soon as I am done we will start. He jumps over to his computer and says "oh you have an MRI at one?" Now, at this point I cannot imagine doing this MRI. I have already decided to reschedule. I don't care—not going. So I tell him I'm planning on cancelling. He says, "I can hurry and get you there…I'll take you there..." "Nope. Not doing it". Then he brilliantly suggests that he can do my head too. What? “Yes.” He can do the same thing with his machine by just including my head—will only take about 10 minutes longer. I am so overjoyed I almost tear up. Thank God. Yes, please do that Prince Ahmed. My now hour long torturous MRI laying flat on my back while I can't breathe has just been reduced to "another 10 minutes."

"I'll call and cancel for you." He gets them on the phone and I can hear a slight battle on the phone. "No she will call you and reschedule… no she's tired… no you cannot talk to her, I want her quiet for my test… you can call her... no you can't… bye." Is this guy a saint or what? I'm stunned by his compassion and kindness. Ironically I can hear my cell phone ringing... I know they are already calling to reschedule. What's up with that?

Finally he lays me down on the machine and the test starts. It's a comfortable, padded, non-claustrophobic ride. I am struggling to breathe a little, but I can get through it. Plus, I know it's only about half an hour and no MRI after. This I can do... no problem.

My test is finished and I can see Ahmed pouring over his computer, as a newly arrived assistant helps me gather my things. I once again thank him and say "you are a prince Ahmed... I'm sure I will be seeing you again." I see his assistant grin and I realize he probably gets called similar things all day long. An elderly lady is now waiting for her test and it dawns on me that people get wheeled out of the hospital from their beds to this trailer too. And that he treats them all with the same dignity.

I find Katy reading in the car. I happily announce that we are free to go, and I am so glad because I am wondering if I will make it home before the slight cramps in my stomach turn into a big problem. I tell her what Ahmed said about young people getting lung cancer. She relates, but not in the way I'd hope. Of course she has a Grandpa like that, "he's in his 80's, smoked forever, never had lung cancer—has had every other kind of cancer though—but not lung cancer." I feel the argument is lost.

Besides, she is now more focused on the fact that she just drove by their house and Brody is home and shouldn't be. She tries to text him while driving and weaving around in her lane. I make her stop. "I just got out of the hospital I don't want to go back." She says, "Okay, I'll only text at the light."

Oh to be young again...

It's now Thursday afternoon. I have my surgery scheduled for Monday to get the port put in for my chemotherapy. I just have to wait for the results, if they find cancer bothering my bones in a way that could weaken them the plan changes. Then they will start radiation first and look at if any other the bones need surgery to be strengthened so that they don't get me cancer free only to have such a weak pelvis or something that it breaks down the road. Sounds awful, doesn't it? I'm praying for no weak bones to show up. I will hear from them tomorrow.

The 3.5 million dollar trailer.

How I got here from there. Part 6 - The big meeting

I am here at the cancer center getting my 2nd chemo treatment. Plugged into the IV and drinking it down. They just gave me a big dose of Benadryl and some muscle relaxant to bring my blood pressure down. It was up this morning. I will tell you why in another blog. My pressure isn't a problem; I was just a little hyped-up and laughing. The result—they want me calmed down. I may start flying a little. So if this section gets a little goofy play along with me before you read it. Leave your computer and go take a big dose of Benadryl and some Xanax or equivalent, wait about 20 minutes and then read. And I find that when I am juiced up my spelling takes a crazy turn—so bear with me if you read this before I get a chance to edit it with a straight head.

And now—the Big Meeting. The tumor board met the morning after I had my MRI. It was a strange feeling. You know that feeling of "oh... someone is talking about me." I imagined them with slideshows of my x-rays and biopsy results, using the Socratic Method to present ideas and passionately arguing how to best treat my case. Picture a scene from the PBS series The Paper Chase, if you remember it. Only instead of law students and a slick harsh law professor it's a lot of doctors and one mediator, my Breast Care Manager! That was a fun and comforting thing to envision. Although I'm sure it was more like a round table with donuts, coffee and sprite. Most likely some conversations about golf and church were in there too...

The meeting was going to be long. I was warned and prepared for it. Still expecting that same scene of arguing, fired up attorneys, I brought a ton of my own information, should I get a chance to argue my "case." My brother brought a tape recorder. Brilliant idea eh? It was Linda's idea. That way she could stay with my son while Lee took me to the meeting. (BTW; if you can't tell the classes I took that used the Socratic Method were my favorite. I have a knack for arguing a point to death impromptu... so it was fun and easy for me.) I can understand why my mind went that direction. I miss that action a little and I have to be careful not to play it out with my friends.

The meeting was fairly early in the morning. I think we had to be there at 9... but let me tell you; we didn't get home until after 7. This was an all day adventure. Wanda the BCM (Breast Care Manager—I've decided to give her an acronym for cool) greeted us when we got there.

She took us back to a room to wait for the doctors. Hmmm… the room is a regular exam room. No slideshows, no desks or tables set up in Socratic design so I can set up my case and present it to the professor—just a room, a couple of chairs, an exam table, a sink... just like your normal doctor’s office. Obviously my creative mind went way off the track... lol.

Wanda explained what would happen. Each doctor would "come in and take a little while explaining what they would do in my course of treatments and what their ideas and recommendations are... of course I am in control and can refuse or accept or suggest a different course."

Wanda is wonderful and sweet and good at her job. I like her, but she started freaking me out. She was making small talk and saying things like "a lot of my women come in here and want their surgery right now… some of them in your position have both breasts removed… and their ovaries... and a mastectomy... well I know mastectomy is an option they will present to you in your case... oh I guess mastectomy is always an option..." She said a few more things but my mind was stuck back on both breasts removed and ovaries. OMFG!

I expected a suggestion of surgery, although surgery right away wasn't in my case plan that I had arrogantly worked up on my own. I had studied my own cancer, via the internet, and drawn up my own course of treatment based on what I knew at the time and what I had read on the 'net. Be warned—that is a good thing to do, but can also be bad. There is a lot of old information out there and a lot of highly opinionated info out there that has more to do with making a sale of this or that. You really have to take your time and evaluate the information you find.

We waited for some time for a doctor to come in. Finally Wanda came in with some candy... see how great she is? Candy. She said the first doctor was still in a meeting so she was going to juggle the schedule a bit and send in the genetic specialist first.

The gene specialist started asking questions about cancer in my family. That was a big whoop ass can of worms... I figure that now that I have a Hulk hair du I can use wrestling lingo right? It's hard to remember my mom's side of the family. Who died of what? It seems like there was a lot of cancer. My mom was a cancer survivor; she had uterine cancer a few years after I was born. I think a couple of her sisters had cancer but I don't know what kind. Since my mom's cancer was uterine and not in her ovaries they don't think I have a cancer gene. Sometimes breast cancer and uterine cancer come in clusters in families. They do a lot of genetic tracing and study here because Huntsman, who founded the cancer, finds huge value in studying the genes that case cancer.

We can't think of any other breast cancers. Then she drops the big one... "Do you have sisters?" Uh... that topic deserves its own blog. Yes. I have two older sisters. I love them. Haven't spoken to them in over a year. (Read more about that in my blog called "sisters" when I get it done.) She asks if I am "going to tell my sisters." Uhh... probably… at some point... I don't know? Then she asks "if this happened to one of your sisters would she tell you????” uhhhh... I don't know. I think so. I don't know. Lee thinks yes. We would know. All in all it's an uncomfortable conversation. Even though she doesn't believe I have the gene, she wants to do a test. I tell her to call my insurance company and if they will cover it, I will do it. Her part of the show was done.

Next came in Doctor—oh the Benadryl is working… I can't remember who was next… I think it was Dr. Alder, the way cool surgeon you read about earlier. This is a surreal moment for both me and Lee. Dr. Alder was our father's surgeon and was very involved with his course of treatment before he passed away about a year and half ago. There were things Dr. Alder recommended that Lee and I felt good about, and so did my Dad... there was a lot of family disagreement surrounding these recommendations. It only added to the acid in the gut feeling to once again see him and be reminded of that. It was difficult. But at least we knew him and how he worked and basically how he thinks in certain circumstances.

He describes my tumor to me in a way I hadn't heard before. He says I have a tumor that has attached itself to my chest wall between my breast and the chest wall that is growing out into my breast and has also invaded my lymph nodes under my arm. They are not yet certain if anything has gone further but there is great suspicion surrounding my lungs.

Dr. Alder says his part in this process will be to put in a port-a-cath so the chemo can be done more easily. I react to that with some squeamishness— a rather permanent place to easily access my main artery? Wow. Then, as he explains what it is and why it is needed, I don't feel so bad. Plus it’s just a quick out patient procedure, under a light sleep. And maybe they can get the pulmonologist to do this wonderful procedure to get the fluid off my lungs and seal up that area so it won't come back. He thinks they can do both at the same time. This is sounding really good to me.

He finishes his presentation, then, oh yeah, I almost forgot. He asks if he "can examine my beasts before he leaves?" Um... okay. My brother runs from the room as if it is on fire. And thus begins the day my breasts have been touched by more strange men than in my entire lifetime.

Notice there was no mention of removing breasts? No mention of removing both breasts and your ovaries and any other potential organ? Whew. I'm still wondering some about that as he and Wanda are discussing schedules and when can he do my port, etc. He says he can do it the next day.

Wanda comes in and says their doing it the next day. I protest. I have a very important meeting the next day. Can't we do it Friday? And I get what is the first of many assumptions that I can "take sick leave," "explain to my employer, yada, yada, yada." I'm self employed. Who do I explain this to? Myself? She goes into this speech of "now Londy you have to take care of yourself, you need this time to take care of you..."

I think taking care of my business is an important part of taking care of me, and my son. It's hard to get people to understand. Appointments start getting booked left and right—many without my consent to or checking to see if I can even come at that time. Not just here but Dr. Abulla had been making appointments on his own for me, so several of them were duplicated. I just can't seem to get anyone to understand that I have to arrange child care and be in a position to leave my business without dire financial complications and have a ride lined up, if necessary. It got crazy.

Next up was Dr. Johnson, the oncologist. I found out pretty quickly that he dislikes being called "the chemo guy" because he now uses so many more anti-cancer drugs that chemo is just one component of what he does. When I then call him "my drug guy" he laughs and goes a little red in the face. He says that first of all we need a couple more tests to "stage" where the cancer is. Depending on what he finds he will map out his course of treatment. One path would be heavy duty chemo/drugs with surgery and then radiation and go for the "cure". The other path would be chemo/drugs to see if we can shrink down the tumor hopefully to get it to a point where it is very tiny and then use surgery and maybe radiation, with some sort of anti-estrogen for the rest of my life. The latter path is more designed to give me a "better quality of life" and also to add "years and years to my life…"

I was instantly comfortable with the chemo first approach—I had decided that in my own course of treatment. It made sense to me. Get it smaller first, smaller surgery is better. He also explained what type of cancer I have. It's called HER2+ which is a very fast growing cancer, but they have a very effective drug to treat it now. And it's also estrogen based, so anti-estrogen therapy will keep it in check once it's gone. To me this was good news. And also something I had thought I might have when doing my own research. I would have picked the same course of treatment and the same drugs.

The tests he wants me to take are a PET and an MRI of my head. He explains that the PET is in a trailer and that trailer is only here on Thursdays and Fridays. They need to schedule it right away. The PET will tell him if any cancer has gotten a start on any other organ or if it is "bugging" my bones. The head MRI is to make sure no drifting cancer cells have gotten to my brain. Good to know—yes—MRI.... ??? Not again… No... This time I have to lay perfectly still on my back with just my head in the machine for an hour. Remember, I can't breathe lying on my back... damn.

More appointment setting goes on... the PET trailer... trailer??? Really a trailer? Will only be here the next day and they had a cancellation and can fit me in... she already booked it. Damn again. If I wait it puts off the entire start of my treatment by about 2 weeks. I can tell that any delay is not welcome. They want me on this crap NOW! Okay, okay... I can see why... no problem... I will try to handle it all biz wise... it will be fine. Then Dr. Johnson says...

“Oh and btw; is it okay if I examine your breasts?”

Next comes Dr. Goff, the one that somehow magically replaced Dr. Abdulla. I don't know why. They are as different as night and day. Dr. Goff is calm. And compared to Dr. Abdulla is a diplomat that could bring peace to the Middle East... not that he would want the job. He says what he wants to do is drain the fluid off my lung and then perform a procedure that will seal the opening so the fluid cannot get back in there. This sounds wonderful to me. Only catch? He is leaving for a conference on Monday so he can only do it on Thursday or Friday. Oh yeah, you also need to plan 4 or 5 days in the hospital... it's not the outpatient thing like I thought it was when I heard Dr. Alder talk about it. More appointment scheduling changing and arranging going on in the outer room, then he says…

“Oh and... do you mind if I examine your breasts?”

Next up is Dr. ?, another forgotten name... I'll try and fill it in when I get home. He is the radiologist guy. He is a tiny bit too GQ for this group. He slides in like his expensive loafers are a little slippery on the bottoms from being new. He explains his role and sort of blows himself off because he doesn't fit into now what is "my plan" until much later down the road... like 6 months or more. He gives a very short explanation of how the radiation works. Short visits; daily till done. Then he is out of there.

Except... wait for it... you know it's coming... "Oh, may I examine your breasts?"

I sort of laugh at this one... can't help it. Lee dashes for the door. The doctor in his defense says "I just want to see them while they are still intact." This has me nearly in a laughing fit. He laughs too. While examining them he says "oh, this is hot..." I nearly fall off the table laughing again. He wasn't trying to make a joke. He was referring to my breast that recently had the biopsy and is slightly warm while it is trying to heal. I don't think I can take any more... it's too weird, too surreal, too much.

Finally the show had come to an end. The appointment negotiations are complete. I have to come and get the PET test on Thursday—which is the next day. The MRI was scheduled for right after; Dr. Alder won't do surgery on Friday. So they have to push the port until Monday. Dr. Goff will be out of town, so oh well… you will miss having that done. I ask about doing it later and get a "maybe," but someone can always just "tap" the fluid if I need it... damn... I need it now. So they decide to send me for a chest x-ray before I go so we can get on it. So this really long day continues with hassling to get an x-ray and also a pre-surgery blood draw.

They gave me a ton of books to read through. Sorry for yet another college analogy, but geez... it really looked like I just signed up for some sort of 2 year degree. Three ring binders, books, publications... they seemed endless. They also give you a nice little pink rose with your books. Sure, it's funny when anyone gives me a rose. I've learned to examine them and say how pretty they are, no matter how much they suck compared to Jungle Roses!

Wanda walked us down the hallway to where I needed to register for surgery and then to where to go for the blood draw and x-ray. There was a short wait and Lee and I plopped down on a bench to regroup. We were both on overload. I considered skipping out on the tests and coming back to do them, but then I remembered my next day was the PET/MRI thing and realized I couldn't do it. Just then Lee pointed out a young woman walking past us with the same books and a rose. He said, "she looks young." She did look young, barely 30 maybe. And then it hit me—they were probably doing 2 or 3 such presentations just that day. That was the reason for the slightly off kilter spacing between doctors and a good explanation of anyone’s confusion... and there wasn't much confusion at all. But now I understood a little better.

We finally get the last of the paperwork done for the day. After the expected confusion you find in a hospital lab/x-ray department that doesn't take appointments (you just walk-in), I got the required blood draw and x-ray. We were free to leave the hospital... finally. We arrived at 9 and left at 6:30. Completely exhausted and overloaded.

What did we learn? I needed more tests. Then depending on the outcome of those tests there were two courses recommended. Path 1—for if it hadn't spread further, and go for the cure. Path 2—for if it had spread and they want to prolong my life and make me comfortable. Rats.

It was a lot to take. I'm glad Lee has such a sense of humor. On the way home we were talking about it and I said something like, “I'd rather lose my hair and not have nausea all the time.” And with my hair I could lose half of it and nobody would know... his reply? Yeah, unless it is all on one side of your head. I cracked up. Funny.

I was exhausted when we got home. He had a tape to play for Linda so we didn't discuss it much in front of my son. We just regrouped so Lee and Linda could leave and get some rest. I spent the rest of the night playing with Legos and trying not to think about it all.

The next day I had to find that trailer?? Were they serious? A trailer??? WTF??? There were all the sorts of images that came to mind. Mostly I remembered when I was in elementary school and the population grew faster than they planned. They made up for the small building by adding temporary "shacks" outside the school. They were one room things that looked like a big trailer. That was what I expected. Or some sort of big RV...

Here today...

…gone tomorrow, my hair that is. For the first time today I sported a "du-rag". I have lost most all my hair. It got to where I was carrying trash-can-sized bags of hair out of my bathroom every day. I now have completely bald patches on top of my head, but still enough long strands on the bottom to look sort of Hulk-Hoganish. I must look a little goofy. I had to go have my blood drawn and little kids were looking at me funny. I've been watching the Flavor of Love to see how those chicks wear 'em... but I think the glasses detract from the gansta look a little. lol

Tomorrow I go for chemo #2. Since I will be sitting there for 4+ hours by myself I plan to catch up on my blog—unless of course all that Benadryl makes me too goofy.

The new "du".