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...