This morning, I met my future husband.
That is to say, this morning, I had my first appointment at MD Anderson and met my new doctor.
Tomato, to-mah-to.
(Okay, okay. I'm kidding. About the husband thing. Mostly. ... Not about the doctor thing. Even one little bit.)
Jo, of course, came with me. (Not that she thinks she's protecting me from the cancer anymore. She's had a rude awakening there, to say the least, but she is a firm believer in being there to support me in whatever the doctors have to say to me, so... she comes with.) Since it was the first time I'd been to the cancer center, I was asked to arrive an hour before my appointment. I was given a tour of the facility. I got to meet with my financial advisor and a slew of other support staff who've been assigned to be my best friends and helpers as I go through this process.
I'm not going to lie, I'm sort of in love with this place. They assign handlers to each patient, specialists to handle any emotional, financial and/or health questions I might have. It's awesome!
After checking in and having a confidential meeting with my financial counselor (like Jo couldn't have been there... please, she knows exactly how broke I am and what my situation is, but how nice are they to keep my financial stuff confidential?), we were escorted to the exam room, where there was a steady stream of women in and out of the room, giving me information and asking me questions, creating a file with The Story of My Life. As each new person would come in, they'd look from Jo to me, unsure which of us was the patient and which was the emotional support. It got to the point that I'd raise my right arm as soon as someone came in, so they could see the pretty bracelet they'd put on me when I was admitted and know right away who was who.
Here's how it would go:
Staff: Walking in, looking from side to side, not sure which one of us was the patient, "Laurie Evans?"
Me: Raising right arm and waving wristband about, "Here"
Staff: "And what's your date of birth?"
Me: stating date of birth
Staff: "Okay, it's so nice to meet you. My name is Blah Blah Blah... Let's get started."
Over and over again. (But not in an annoying or unpleasant way.)
Enter my new (and most definitely NOT wearing a wedding ring) oncologist. He came in and I waved my wristband about, so he'd know who to talk to, and we got down to brass tacks.
He advised that he'd reviewed my medical history and explained that, while liposarcoma is more likely than most sarcoma to respond well to chemo, he feels that having another surgery is the better way to go at this point. He said "I could give you chemo for months, maybe even for years, if that's what you want to do... but at this point, the only guaranteed cure is to cut the tumor out of you."
Gulp.
So not what I was expecting. At all. ... But the good news is, I've become accustomed to whiplash in regards to my medical life, so I recovered quickly.
We talked about why surgery instead of chemo. Again, chemo isn't a guaranteed cure for someone with my special blend of cancer. (Awesome.) Surgery is, in that it gets the tumor the heck out of me.
He's not worried about the cancer going directly to my lungs. (My current oncologist has had some concerns there, and it seems that was one of the major reasons he'd suggested chemo in the first place.) New doctor explained that he'll continue to watch my lungs, to make sure there isn't anything happening there that shouldn't be, but that he isn't particularly concerned about lung cancer as a secondary condition, because liposarcoma isn't as likely to hit the lungs as leiomyosarcoma is. (Sound familiar? Yes, yes it does. My first thought was "Cousin Greg will approve that my new doc is giving me the same info that he gave me.")
He asked why my first two surgeries had been performed by a general surgeon instead of an oncological surgeon. ... Easy answer - I hadn't ever heard of an oncological surgeon, prior to his bringing this up, and it never been suggested. I explained that my first tumor was found when I was almost at the point of exploding from growing a watermelon in my body, and that when I was scheduled for surgery, we didn't know if it was a teratoma or a liposarcoma. (The pathology reports told us what had been taken out of me 48 hours after the fact.) There simply hadn't been time between finding the first tumor and getting it out of me to escalate anything, or to get a second opinion. I explained that when the second tumor showed up, it was assumed that I'd have the same surgeon as I had the first time. For whatever reason, none of my doctors ever thought of escalating me up the oncological chain to get a specialist surgeon, and I sure never even thought about the possibility.
He explained that an oncological surgeon would be much more aggressive than a general surgeon, that I will most likely lose my left kidney this time, along with any other affected tissue and other non-essential tissue or organs that I can afford to lose without impacting my ability to function.
Holeeeee crap. Surgery. Again. And he wasn't kidding when he said it would be more aggressive.
Now, he didn't tell me that I have to have surgery. As I reported way back at the beginning of this story, he offered to give me chemo if that's what I wanted. (I would like to interject here and state officially and for the record that I don't want surgery or chemo. What I want to do is pass on both options, and just get rid of the cancer. ... Too bad I don't always get what I want.) When he first suggested surgery over chemo as a treatment option, I told him that I'd do whatever he told me to do. He smiled, sadly, as he told me that he can't tell me what to do. He explained that, as the patient, what treatment plan I choose is up to me. He did say, however, that if it were him, he would opt for one more surgery, this time with an oncological surgeon. I expressed concern that these surgeries are hard to recover from, and my fear is that I'll have another surgery and then it will just come back - again. He acknowledged that that is a possibility, but that with a more aggressive surgery, they just might be able to get to the source. And, he said, if it did come back after I'd had an oncological surgeon operate, I would have the peace of mind that comes of knowing that I had done all that I could do before I escalated treatment to chemo.
Okay. That made sense, because I happen to be a big believer in doing all that I can do. (Also, I'd really rather not lose my hair and/or be pukey sick and miserable for months or years on end.)
So, surgery. Only more aggressive than it has been in the past. (Imagine me, shuddering at the thought of how hard it will be to recover from something more aggressive. The last two surgeries were brutal, and this will be more of the same, but probably harder to go through and I will most likely take longer to heal. Wow.)
I was a little shell-shocked (I have to think that this reaction is normal for someone in my position). It took me a few minutes to process. The man just sat across the room from me, stoically waiting for me to decide what I wanted to do.
Surgery, I told him. I want (no, I need) the peace of mind that comes of knowing that I have done all I can do. He asked if I had time this morning to talk to the surgeon. (Wait? ... What? ... I could meet with both doctors on the same day, under the same co-pay?!) Heck yes, I had time to meet with the surgeon! He asked us to excuse him for just a moment while he went to check with the surgeon and see if he could come in and visit with me.
While he was gone, Jo and I talked for a few minutes about this new plan. By the time he came back into the office, we were past the horror of finding out I'd need to do surgery again and back to our usual joking and laughing. He came in, sat back down on his little doctor stool and explained that he'd talked to the surgeon and that he'd come in and talk to me in a few minutes. We chatted for a few minutes while the surgeon did whatever it was he was doing.
- I may or may not have (read: definitely did) sort of ask him to marry me. ... I'll tell you more about that part of the story in a future post (mostly because this one is already just waaaay too long). He did laugh out loud at my proposal, but he didn't say no. (I live in hope that I'll be able to wear him down.) -
After about five minutes of raucous laughter (most of which was brought about by my telling this man that I have a deal with the Lord that it's okay if I keep growing tumors as long as He'll deliver an oncologist who will cure my cancer and then marry me and pay all my medical bills), the oncologist excused himself and the surgeon waltzed in to take his place.
As the surgeon came in, I repeated my right arm wrist shake so he'd know I was the patient. He just laughed and said "Oh, I know which one of you is the patient. You're already pretty famous around here." (It turns out that he and the oncologist are BFF's and he knew the story about how I'd asked/told the man to marry me. ... I told him that if he wasn't wearing a wedding ring, I'd give him the same deal. He just laughed. Like I was kidding.)
The surgeon ran through most of the same information that the oncologist had already given me. It will be another open surgery, laparoscopy isn't an option here. It will be more aggressive. I'll almost definitely lose my left kidney, because it's close to the origination site, my first tumor had adhered to it, and it's a non-essential organ. He'll take as much of the retroperitoneal tissue as he can.
We talked about the timeline for surgery. Which is to say, we talked about how there isn't a timeline for surgery.
Right now, the plan is to watch and wait. With my tumor being as small as it currently is (it measured at approx 2 centimeters at my MRI in January), the risk of surgery outweighs the risk of waiting. So, I'm going to grow a tumor. (Great plan, right? I feel a little bit like a pod, knowing that I'm hosting a malignant growth, but whatever.) They'll do another MRI and chest CT in the next few weeks to get a baseline, and they'll do follow-up scans every 90 days to monitor the growth of the tumor. When it gets to be the right size, they'll take it. (PS - There is no "right size", as in x number of centimeters in length or whatnot. They'll be looking for a combination of factors: margin, other affected tissue, change in my overall health, etc. When they see what it is they're looking for, they'll schedule surgery. I was told that could be in three months, it could be in a year.) It's a little bit frustrating to know that I'll have surgery, but not know when I'll have surgery. The control freak and planner in me just wants to get this over with, or at least on the calendar, but I'm working on letting go of the need to plan and learning to trust that it will all work out. The truth of the matter is, I'm in a bit of a sticky situation with work - having started a new job in the fall, I need to be there for a year before I can qualify to take a medical leave of absence - so waiting may end up being the best case scenario for me as far as that goes.
At the end of the day, this appears to be yet another lesson in how I am not in charge. As much as I might want to be in charge and as much as I do my best to assert myself and make the best of the situation (remember how I asked my doctor if he would marry me?), I am not the boss here and I have to trust that Someone Else (as in G-o-d) is. I have to trust that there is a greater plan, that these new doctors know what they're doing (they did, after all, go to school just to learn how to work with "hard to treat, hard to cure" cases just like mine), and that this will, somehow, turn out okay.
So, to sum today up... I, once again, learned that The Plan can change on a dime. I, once again, was reminded that I am not in charge. My hair is, once again, calling the shots in my life and is refusing to say die. (I feel a little bit like "the girl who cried chemo" about how dramatic it has been to think I was headed down that road. But listen, as horrifying as it was to think I was gonna have to go there, I was preparing myself for a treatment I'd been told I'd need.) Even as I try to wrap my head around this change in treatment plans, I am grateful that I won't have to go the chemo route just yet and I am hopeful that this one last surgery will be just that - one last surgery.
I have to trust the Lord and I have to trust my doctors, because without trust all I would have is fear and uncertainty. Given the options, I will choose faith and trust, every time.
