Innermost Secrets, Revealed

So, after I shared with you my scans post, I went to bed...and waited. The anxiety over my scans and what they would reveal meant I couldn't fall asleep, and my ongoing cough kept me from drifting off anyway - but I was also so tired that I wasn't really awake, either, so I just sort of dog-paddled through the night, treading proverbial water by listening to audiobooks, eating Bit O' Honeys, and playing Yahtzee on my phone. Sleep finally overtook me around 2:30 or 3. But Thursday was another busy day at our house - it was the Thanksgiving lunch celebration at the kids' school at noon, bloodwork and my follow-up scan appointment started at 1:30 all the way across town (of course), kids had to be ferried about to and from wildly different locations at the same exact time (4:30), and then I was scheduled to give a lecture (with my voice only at about 50% capacity) at the local library about the Supreme Court at 6:45. Oh, and it snowed. After being 80 yesterday. The news had promised a quick moving storm and 1/2 an inch of snow flurries, but it snowed all day and into the evening, and we wound up with about 2 inches - and a lot of slush, icy sidewalks, and generally chilliness. Such an adventure!

So I was up and at 'em as quickly as possible on Thursday morning - especially since I hadn't yet prepped the Supreme Court lecture I was giving. Eek. Thanksgiving lunch was lovely but made my stomach very upset (or maybe my anxiety made Thanksgiving lunch unpalatable - I don't know), so I was thisclose to looking for a barf bag in the car as Nick and I made our way to the hospital. I went to the cancer center and waited my turn, then they took me back into the blood draw room and accessed my port. Do you know what a port is? Let me explain. Instead of getting an IV every time my medical team needs blood or needs to give me chemo and other meds, I had a port installed in my chest shortly after diagnosis. The port is a little plastic thing-a-ma-bob inserted under the surface of the skin and connects to one of the main veins in my neck via a little tube. You can read more about a port here.  They are very painful to implant (although you're usually asleep - for various reasons, I was not, and although I was anesthetized, it felt like someone was hammering on my upper chest with a giant mallet VERY HARD) and then it hurts like hell for several days afterwards while it's healing. But once it's settled in, it's much easier than getting stuck all over the place, especially since I have small veins. Also, several difference chemotherapies I've taken are so strong that they can't be infused through a regular IV because they would eat away at my vascular walls and skin (nice, huh?). You still have to have a large needle stuck into your chest, but what can you do? 

So, they accessed my port - poked me with a needle, made sure they had clear access to my blood (they take a whole vial of blood and then toss it), then cleared the port and its accessories by flushing it with saline (which somehow you can taste - not salty, tastes like pennies) and then with heparin (blood thinner product; you can also taste this and it tastes like chemicals, sort of like lemon Pledge smells but without the lemon part) - and then took four vials of blood: a CBC, a comp panel, and two vials for PT/INR testing (they throw away the first one just in case it's tainted with alcohol, heparin or other things that might effect the test).  I get bloodwork every week. Usually it's a CBC and a comp panel. The CBC (complete blood count) test tests my white and red blood cell counts, my platelet count (always very important for me, because mine bounce around and I have a chronically low platelet condidtion called ITP - without enough platelets, I'm not allowed to receive chemo, which obviously is not good), and some other related info. The comp panel tests a bunch of stuff: sodium levels, protein levels, kidney functions, liver functions, and so on. The numbers we always need to know are my liver function numbers - one of the drugs I take can knock them completely out of whack and that means my liver isn't tolerating treatment well, so sometimes we have to hold treatment. One of the things it tests in my liver is my bilirubin levels - too much bilirubin and you get jaundiced and clearly, your liver is not working well. Mine is usually high. We discovered in September that my high bilirubin levels, though, are a result of the fact that I also have a rare disorder called Gilbert's syndrome, which means I have naturally high bilirubin levels and fasting, eating the wrong foods, and a bunch of other stuff can send it soaring. Since learning that, we don't worry as much about the bilirubin levels (because again, if they're too high, no treatment for me). The PT/INR checks how quickly my blood can coagulate (clot). Isn't it fun knowing all of this stuff? No? I agree. But I'd rather know than just have them testing away and wondering what the hell they're looking for/at. 

Anyway, blood tests over, we headed up to the third flood to the Cancer Center's GI clinic. This is where my onocologist is; he's the head of the division. My appointment was an hour after my bloodwork appointment. So we waited. There's a lot of waiting in cancer world. By this point, I was anxious and nauseous and couldn't concentrate at all. I couldn't even knit or read a book. I hate that. As we waited, Nick and I kept checking the "myhealth" app, which is a handy app that gives me access to all of my medical records at the University health center, and updates as info rolls in. Because there was an hour between bloodwork and my appointment, I would likely get my bloodwork test results back via the app before we saw my doctor. It's also plausible that the scan results from Wed night could be posted before I saw the doctor (this is why I insist on seeing the doctor ASAP after getting scans. No one wants me going rogue reading the scan reports and then calling every number I have because something in the report freaked me out). So we sat side by side, pretending to be busy (Nick was actually busy reading and responding to work emails, but I was useless) and checking the app every 20 seconds. Sure enough, my bloodwork AND my scan reports posted before we even got into an exam room! 

Nick noticed the scan results before I did, because I had stepped out to powder my nose (again).  He saw me and smiled. "The scans are posted. It's good news." I had just been intercepted by a nurse to get my vitals, so we three trooped over to that room and as she got my pulse (high!) and oxygen levels (low!), Nick read out the summaries to me. No new areas of concern. All lung lesions (the only place where I currently have cancerous tumors - they are the metastasis of my colon cancer, which is why I am a Stage IV, or metastatic, colon cancer patient; I do NOT have lung cancer) stable, with several of the largest cavitated, which means that the middles look dead/hollow!

This was extraordinarily good news! My treatment regimen of Xeloda (an oral chemo regimen that I take at home for seven days and then break for 14 days and repeat the cycle; best known as the drug of choice for metastatic breast cancer maintenance treatment) and Avastin (an infusion I take at the hospital every three weeks; the retail name for bevacizumab, an angio-genesis inhibitor, which means that it blocks blood vessel growth from my tumors - a huge blockbuster of a drug that is used across a number of cancers) continues to work! I should point out that, as of today, I am not considered curable. All of my treatments and therapies are aimed at containing my cancer, not completely eradicating it. There are a number of really exciting developments coming down the R&D pipeline, though, including an immunotherapy combination that shows great promise in not only containing but actually destroying metastatic tumors; a colon cancer vaccine; and a virus that works to allow drugs past your cells' natural closed gates so that it can kill cancer within a cell. So my incurable status may change. Keep your fingers crossed! 

We met with my oncologist - but first, he made his new fellow walk through fire and tell me all of the results, field all of our questions, and offer her views on treatments, etc. Nick and I are not passive receivers of information; he, in particular, will pick out the smallest comments on the scan reports (not just the summary) and request, in his mild and easy-going way, more detail and analysis, or ask for minute details and discussion of treatment options coming down the pipeline, while I, in my typical verbose and excitable way, ask a lot of possible future scenario questions and bulldog relentlessly over blood test results. Picture a gentle but sharp-eyed border collie hanging out with a bouncy, somewhat yippy but on the ball terrier and that's us. Anyway. The fellow. She's fantastic, bright, calm and has a good sense of humor, which is non-negotiable for me. How else can I ask someone where on the priority of things likely to kill me list (I do actually keep such a list) I should put a high bilirubin level and get a reasonable answer? Anyway, she gets me. And so does my oncologist. Thank goodness! Once he arrived, we looked at the reports and the scans together, he offered cheerful and optimistic commentary, and we left. I cried, I was so relieved. I felt as light as air and who cared that it was grey and snowy? My relief and my gratitude lit up the day. Another reprieve! More time on my side! 

I had been very, very anxious about these scans because my bloodwork had been pointing to potential problems and they moved up my scans from mid-December to RIGHT AWAY, STAT! Never a comforting thing. I've also been sick and had various aches and pains and been unbearably exhausted, which doesn't help one's ability to cope. And once one thing goes wrong, everything suddenly is suspect and feeds my (completely rational, by the way) paranoia that my treatment regimen is no longer working efficiently and we're going to have to move on to something else. Use up one of the precious treatment bullets left in our proverbial holster. 

That's the thing, see. When you live with metastatic disease and there's no cure for you, all you can hope for is stability and lack of progression. I look and act pretty much like any other person you know at first glance (insert various appropriate shade about my personality here), but not a minute of an hour of a day passes me by without me knowing that the halt in my cancer is temporary and there are only so many ways to stave off its growth. 

The good news is that cancer research is in an era of extraordinary advancement.  When I was diagnosed, only 9% of those initially diagnosed with my kind of Stage IV cancer survived 5 years or more. Nine. My kids were 4 and 6 at the time, and there was a 91% chance that I wouldn't see either one off to middle school. These days, the survival rate is higher: 12% of stage IV colon cancer patients make it five years or more. Not fantastic, but I've never been a numbers girl anyway. Still. I'm at almost exactly 3 1/2 years since diagnosis, so... The pressure of knowing what I know about my disease and about my statistical outlook never leaves me. Ever. 

The flip side of this constant fear and pressure is that I'm so grateful for and aware of all the love and fortune in my life and in the lives of my family members. Even though the first flush of my diagnosis sunk in long ago and many of our friends and family began to return to their attention to their everyday lives and leave us to our "new normal" - as is to be expected - we still receive so much love and affection. Little notes, lots of prayers, routine offers of assistance, thoughtful meals dropped by, delicious cookies delivered, children ferried from place to place...the gratitude our family feels for our community is overwhelming. I also have some very patient and understanding and thoughtful friends who are gracious enough to listen to me complain, and cry, and voice my fears. Who wait with me, virtually and otherwise, for answers I never even wanted to ask as long as I lived. I don't know what I would do without their overflowing and abundant hearts.