Pulling Back the Curtain

I have the tendency to leave out the messy, sad, difficult parts of my everyday life with cancer. The reasons for that are legion, but they boil down to one: we all like to present our best selves. No one likes to feel vulnerable and naked to the world. I don't want people feeling sorry for me or pitying me. There are only a tiny handful of people that I really open up to about this terrible disease, and that's because it's a huge burden and frankly, I don't want to trust just anyone with sharing my load. 

But I don't want everyone to think life is all rainbows and sunshine, either.  When one of my closest friends, who loves me very much (and the feeling is mutual), urged me to stop obsessing over certain things and gave me a well-intentioned pep talk about how the big crisis was over and it was time to find my "new normal"...well, I knew I had some 'splaining to do. If someone that close to me thinks that we're all done with cancer around here, I'm not communicating very effectively. So (deep breath), here goes. Come on in! 

The major interventions of my first year of cancer are over: the big surgeries, the big chemo, the trip to MD Anderson, where the doctor told me that what they can find and root out, based on my history, is "probably just the tip of the iceberg." (That comment is seared into my brain, I'll tell you what.) I still have cancer. My medical team is currently monitoring some metastasis on my lungs, and when they grow to a certain size, I'll probably have SBRT treatment again for them. Recurrence rates for lung mets for my particular cancer are around 80%. The likelihood that I'll still be alive in 3 years (they like to measure 1 year, 3 years, and 5 years from diagnosis when they're tabulating everything) is around 30%. That's a hell of a lot better than the 9% percent chance I had at five more years upon initial diagnosis, but ya know, it's not exactly ideal. (Luckily, I've always hated statistics and usually can put these numbers aside. The day I was diagnosed, I googled colon cancer survival rates - and that was the last time I googled anything related to my cancer. No, thanks. My husband does the heavy lifting there, as in so much of this experience, and he sometimes passes useful peer-reviewed journal articles on to me to read.) I have about an even chance of more liver mets, and there is the possibility that my cancer could spread to other areas. I don't like thinking about that, so I'm not going to, but you feel free to ask The Google. 

Right now, I have CT scans to check for new tumors and for enlargement of my existing tumors every 2-3 months. After a scan, if it's good news, I have a great couple of weeks, mentally and emotionally. Things look good! I'm doing well! But then I reach the tipping point and the next scan is closer than the last one, and I start to worry. What if there's new lesions? What if there are new areas affected? What if the last round of treatments didn't work? What if? What if? What if? And then my sleeping starts to go downhill and I get increasingly irritable and I have a little breakdown now and then, after the kids are sound asleep, in the arms of my truly astonishing husband. I stop reading books and being productive and start watching "Friends" episodes - I've seen almost every episode over a dozen times. I don't like to watch anything else. I don't want any surprises. I lose interest in making dinners, and lunches - oh, the lunches! It's such a bother, really, since I'm home alone. My mom comes over once a week and takes me out to lunch. Thank God! Sometimes, that's the only lunch I really eat that week. (...Although my husband makes sure I eat lunch on the weekends - see? he's amazing!) The rest of the time, its energy bars, or maybe cereal, or just fruit and vegetables that I can eat from a cup. Or a lot of water and some Pirate Booty. A handful of nuts. (Pecans are my current favorite.) I stop answering texts, and don't spend as much time with my kids as I wish I would because I don't want to yell at them. I huddle up in my bed but I rarely sleep. I wear the same sweater or jeans for days in a row. They comfort me. 

You see, I'm on this horrible, high tightrope, where I have to convince myself every day that I'm not going to plummet to the depths of the beyond - and that even if I do, that will be okay. If I'm going to go, I want to live life to its fullest. I want to be in the present moment, aware of joy, soak up all the knowledge and love and connections that I can. I have my children to attend to, and my husband, and my parents and the rest of people that I love. I have to keep moving forward with my career, even if it winds up dashed into the dust. Usually, I'm able to pull myself together and go out into the world, to focus on my kids, to take on new work projects, to lead the girl scout troop, to have fun. Sometimes I even have on clean clothes! It's quite a feat. I want to live with grace, and courage. But it doesn't always work. 

My scans should be every three months, but there have been a number of unexpected crises that have led my medical team to go ahead and check things out sooner rather than later. (More on that in a minute.)  I cannot tell you how grateful I am to my oncologist, my surgeons, my amazing nurses, and the rest of the medical staff at UCH (and elsewhere) who have literally kept me alive for almost 19 months now. 

Speaking of my medical team, I see them a lot. Any time I have a fever, or a weird ache or pain or problem, I check in with them, because there is the very real chance that I could have a terrible infection, a heart problem, a secondary cancer developing, a new clot, or some other terrible something that I haven't considered. I go in for bloodwork at least once a month, to see how my red blood cells and white blood cells and platelets are doing, and to check the level of what's called my CEA - a component in the blood that helps indicate how much of my particular cancer is swimming around in my body. Normal CEA numbers are 2 or below. The last time I had blood work, mine was 3.9.  So, the cancer's there, lurking around. I've been to the ER at least 5 times in the last two years. Once, they thought I could have developed leukemia because my counts weren't recovering. Cue the bone marrow biopsy, where the doctor at one critical point said, in her German accent, "Your job right now is not to scream." Another time, they thought maybe I had a heart irregularity. I had to get an echo. Another time, and another time, and another time...You get it. The list goes on.  Rarely a week goes by in which I haven't been in contact with my oncologist. Thank God that he lets me email him anytime, and gets back to me very quickly. His name is Wells Messersmith, and he's one of the best oncologists in the country. My friend Elizabeth helped me get in to see him when I was in critical need. I'll be forever grateful to her. 

Everyday life can be a real pain in the ass. I take a lot of medicine - an anti-coagulant called Fragmin  (the shot I've mentioned before) to help make sure I don't get another clot, and that the massive clot I have doesn't cause more trouble; a pill to help keep inflammation in my stomach lining down, stool softeners so I can poo, anti-anxiety meds to keep the panic attacks at bay, a  low level anti-depressant. Three days a week, I take more pills, to help keep my edema (water retention) from getting out of hand - two kinds of diuretics and a high dose of potassium to counteract the effects of the diuretics. Before I go in for a scan, because I had a reaction to the contrast dye they use during the procedure, I have to take two courses of steroids and a bunch of Benadryl to make sure I don't get any more reactions and wind up, well, dying. Then if I get sick, of course, there are antibiotics. I get sick more than the average Jane. I take Norco for pain - a constant lower back ache probably related to my IVC transection and my edema, pains around my surgical scars, sore throats, headaches. I'm not allowed to take Ibuprofen because it could make me bleed out due to the anti-coagulant I take. I've become pretty inured to Norco. And then there are the supplements: melotonin, to help me sleep and to build my immune system. Vitamin D3, because my levels are low. Turmeric and AHCC (a mushroom compound), both of which have shown promising results in boosting immunity and cutting recurrence risk for my particular type of cancer. A B12 supplement since I've gone vegan, because you can't get that from a plant-based diet (well, unless you eat your vegetables dirty - it's actually a bacteria). I have a little pill dispenser that I fill every week, and usually while I'm doing this I cry - sometimes from exhaustion and heartbreak, and sometimes from gratitude and hope. Maybe both. It's good times. 

Not a day - rarely an hour, really - goes by that I don't think about the fact that I have cancer, and what it's done both to AND for me. I worry incessantly about my children, about my husband, about my parents and my loved ones and how they are dealing with this disease, whether I'm burdening them too much, how grateful I am to have been shown, fully and deeply and truly, who is out there in the world who really loves me. This disease, it has ripped back the curtains of my relationships and set in process a series of significant reconfigurations. Some people I thought would be there for me, weren't. Far more people than I thought would be for me, have been. I feel really blessed. I give a lot of hugs, and tell the people I care about that I care about them. That's always a good idea. In this way, cancer has been a most amazing blessing. 

But really, often, it's more of a bane. I'm both profoundly impressed by, and horribly distraught about, my body. It has been so sturdy, so strong, it's carried me through hell and keeps showing me that it's ready for more. Despite all of this crap, I can still walk for miles, can still swim, can still practice yoga. I skied last season, just a little, and have every intention of skiing a lot, this year. I never had much in the way of body confidence. In some ways, now I really do. I have scars from multiple surgeries, though, that are really ugly. I have a power port - little thing that's just under the surface of my skin and has three big bumps on it that poke out, like I've been marked by aliens - installed in my chest wall so that the medical teams I encounter can draw blood and dispense medicine without having to start an IV. (And I never, ever forget when I touch my port, which I do out of habit almost every day, that the chemo I've taken was so poisonous and so powerful that I wasn't allowed to have it via IV, because it would have burned away the walls of my smaller blood vessels. Scary shit, isn't it?) Because I get edema regularly, I can wake up in the morning having gained 8 or 10 or 13 pounds, which as anyone whose ever been weight-conscious might guess, is really a terrible feeling. I have tiny permanent tattoos due to the SBRT treatments. I cut off all of my hair in March because I was losing so much of it. I really miss my hair. It was my pride and joy. 

Right after I posted my last post, where I was all positive and optimistic and shared my plans with you and said I was feeling great, I contracted a cold, which got worse and worse and finally I wound up having to take yet another course of very strong antibiotics. At the same time, a lingering pain I've had on my right side started to worsen, and over the weekend while I was coughing, it suddenly got so bad that I couldn't breathe for a minute, and could barely lean over.  Walking hurt. I ran out of Norco. I thought it might be related to my last round of SBRT treatments - there can be delayed side effects of radial pain, or even broken ribs- so on Sunday night I emailed my surgeon and my oncologist and explained the situation. My surgeon agreed that it could be due to the SBRT, so she had me stop by the next morning. After a brief discussion, she was less sure that SBRT was the cause. She wanted to rule out a blood clot and any new metastasis. I told her my next scan (just a chest scan, without contrast, as opposed to the regular chest, abdomen, pelvic scan with contrast that I get every 3 months) was scheduled for Nov 21. She said to move it up. To when? I asked. Today if you can, she replied. Tomorrow at the latest. She conferred with my oncologist. He agreed, and said, you know, pain in that area can be indicative of liver mets. Let's go ahead "with the full Monty." (He actually wrote that. This is one of the many reasons why I adore him.) So we did. At 5:30 this morning, after I'd slept for about 3 hours, we rolled out of bed (my husband never misses an appointment or procedure ) and went to the hospital and I had a full scan. And then we waited. The waiting game is excruciating. Wait, wait, wait, and wait some more. I never let them schedule a scan on a different day than a doctor's visit. There's no way I could wait overnight to hear results. The worst part is, I'm spoiled when it comes to that. It's routine to have patients get their scans and procedures...and then not schedule them to visit for days, even several weeks. Another reason I am forever grateful to my medical team. The scheduler takes care of me. My favorite nurse helps cut through the red tape whenever I need something that doesn't seem easy to do. Everyone gives me water, and compliments, and cheery smiles and hope. 

And the scan? (See what I did there? I made you wait. Sucks, right?) The scan ruled out a clot or liver mets. The lung mets are still there, and one of them is almost large enough so that I'll be allowed to undergo SBRT again to blast it off. So, a happy ending. I mean, of course I still have this terrible pain in my back, and I wasted two days just freaking out. But my mind, it's relatively at ease. I think I'll sleep well tonight.

Sorry if I overshared. Thanks for listening. Treat my comments carefully, and guard them with the kindest parts of your hearts. I can't pull back the curtain very often. But thanks for letting me do it today.