So, I know I’ve pretty well let you guys know (whomever all is out there reading ;) ) that I am, in fact, facing cancer for the fourth time in my life. I’ve been rather hopeful that I could have kept it at ‘three strikes your out’ but the cancer doesn’t seem to want to follow my rules. I still get a lot of strange looks from just about all hospital personnel when I tell them that I’ve not had cancer only once, but three times previous to this and it’s been an off again on again battle over the last fourteen years for me. There still seems to be confusion in a lot of people I talk to–I look too healthy, I’m too young, I’ve never smoked is my most recent one. So, for the sake of finding a nice place to point people to when they want to know, I’ve decided to pop up a FAQ of my own.
How many times have you had cancer? Four times, but three types of cancer. At sixteen I was diagnosed with Hodgkin’s Lymphoma after a good friend found a lump above my collar-bone. I did a very light chemotherapy and no radiation as part of a study at OHSU in 1998 to see if young cancer patients could go without damaging radiation. Every last person that went through that study relapsed (their cancer came back). I was an oddity in that my cancer did not come back until a full five years later. Most cancers, if they’re going to relapse, will normally do so within 1 to 2 years of being announced in remission. I was twenty-one when mine came back, and to make me a bit more of an oddity, it came back to the same stage it had been in the exact same spot.
So at twenty-one I went through an intense chemotherapy and localized radiation that was centered on my chest. The radiation eventually caused the breast cancer when I was twenty-seven, and now has caused my lung cancer at the age of thirty.
How do you know your cancers were caused by the radiation? While I cannot sit there and go with 100% authority these cancers were caused by radiation, I can however say what they were not caused by. Breast cancer does not run in my family (as I found out through genetic testing and poking through genealogy stuff with my mom), and every test they’ve put me through have pointed away from other causes and pointed to the radiation. Because the other possible causes for my lung cancer were ruled out, including the possibility of my breast cancer metastasizing to my lungs, my doctors deduced that radiation was likely, once again, the culprit. The fact that both cancers are within the radiation field also is a pretty big indicator as well.
Have you ever been exposed to cigarette smoke? This seems to come up often, even after I explain the whole radiation thing. From what I understand and from what doctors told my father after he quit, that it takes about 10 years after you quit for your lungs to return to a relatively healthy state. Aside from the fact that my doctor has ruled out cigarette smoke as a culprit, my father quit smoking when I was in 5th grade. I’m 30. It’s not from the second-hand smoke, and aside from the whole cancer thing, my lungs have been operating in a perfectly healthy way for many many years.
Are you going to die? I cannot begin to emphasize what a silly thing this is to ask somebody going through cancer. Please stop asking it. Not only is it a pretty upsetting thing to ask somebody in general, depending on their state of mind, it’s also pretty insensitive if not rude. If their situation is going to take their life, they’ll let you know if you need to know, otherwise, seriously, don’t ask it. As for me, I will die, eventually, but I’m not about to let the cancer do it. I was here first and I do not tolerate unwelcome visitors to my body. Cancer will not stop me from seeing my children graduate from high school to become functioning adults in the real world. So nyeah.
How do you do it? I get this question a lot. And I do mean a lot. I could go on to think of all sorts of reasons, but when it comes down to it…how could I not? I have so many things to live for in this world that are worth the fight, so it seems, in my situation, to be the easy way out to just give up. I don’t like giving up. Simple as that.
What type of Lung Cancer do you have? This doesn’t come up nearly as much, and typically only comes from those who actually know there are different kinds. I have Non-small cell carcinoma consistent with poorly differentiated squamous cell carcinoma. Mouthful, right? Basically it means while yes, it is aggressive, it also means it was not from the breast cancer, nor was it from 20-year-old second-hand smoke that no longer is in there. If you still want to know, check out google, I’m sure there’s a ton of websites on it.
Why don’t you have to do chemotherapy again? This is not a for-sure thing, I want to point out. From what we can tell from a PET scan, a CT scan, a bronchoscopy, and an endoscopic bronchial ultrasound, the cancer is small and has not moved from its one little spot. We (meaning myself and my doctors) won’t know for certain the extent of the cancer until the lower lobe of my right lung is completely removed. There’s always the possibility of little satellite lumps that don’t quite show up on scans. If the cancer is less than 4 cm and has not spread to the lymph nodes, I will not have to do chemotherapy. As it stands, my tumor is 1.2 cm in diameter. Assuming this has not drastically changed over the summer, I should not have to do chemotherapy, as a lobectomy of my lung should take care of it.
How do you know the cancer will stay away? I don’t. The fact is, I never will know with 100% certainty. The best thing I can do is remain healthy, eat stuff that’s pretty good for me, and get my yearly scans and blood tests to make sure I’m clean. Anything I can do to prevent it, I’ll work on doing, and hope that my body doesn’t decide to pop up another lump in the future. Seems pretty simple, but you have to remember I’ve been doing this for fourteen years. Consider me a veteran of these sort of things.
Does it hurt? I always have to follow-up with “What, the cancer?” when this is asked. Because I can honestly say the cancer itself has never hurt. I’ve caught it early all four times because I’ve been pretty vigilant about my own health. The treatments and surgeries that I go through to get rid of the cancer hurt more than the cancer itself. However, if I went without these treatments and let the cancer spread, I would likely die in a pretty agonizing way. I’d rather have a short period of pain than a slow decline in chronic pain over several years. I guess it’s a lot like pulling off a band-aid from a particularly hairy area. If you pull it off fast, it is a sharp shock of pain that’s over pretty quickly, but if you slowly pull it off it’s like torturing yourself. Which would you prefer?
What’s a lobectomy? (Mind you, mainly for Jenn’s mom, don’t read this paragraph. If a description of a bronchoscopy will gross you out, this might give you nightmares. ;) ) This isn’t helpful that they call any surgery where you are removing a lobe of your body a lobectomy. So there are also brain lobectomies, which tend to confuse people. Apparently not a lot of people realize that you have lobes in your lungs. So, on a normal human being your left lung has two lobes, while your right lung has three. My cancer is in the airway just going into my lower right lobe. The Lobectomy that I’ll be getting will be removing the entire right lower lobe. I’ll be knocked out and numbed up. I will not have ribs broken, nor will my muscles be cut (as per the assurance of my surgeon), but the ribs will be spread a little and an incision will go…pretty much parallel to the scar I have from my mastectomy. When it comes down to it I’ll end up one lobe less with an equal sign on my right chest. I’ll end up in the ICU (intensive care unit) for about three days before they will move me to my own room when I’m able to breathe on my own. I’ll be urged to walk, test my lung capacity, and move a lot to make sure I don’t get any clots in my legs, and after up to four days in my own hospital suite, they will likely let me go home. I’ll have about two weeks after that before I’ll even be able to operate my mom-mobile, so I’m looking at at least three weeks of relative uselessness. This is, of course, highly dependent on how I recover. I will likely have drainage tubes in my side like I did with my mastectomy for about six weeks total, however. Call me strange, but all of this doesn’t phase me. In fact, the only thing I’m nervous about is the epidural they’ll be giving me. Weird? A bit. But I went without one for both pregnancies due to my severe dislike for them, so the fact that I’m not really being given a choice for this one does not put me at ease. Likely something I’m overreacting on, and will likely get over, but it’s the only thing catering to my nerves right now for some silly reason. Removing a lung? Meh. Large scar on my chest? Eh, I have one already! Epidural in your spine? Feeeeehhhh! Get it away!
How do you tell your children? Honestly, it’s not easy to tell them and know they’ll understand. My kids are three and five. When my son was two and a half, going on three, I tried to sit down and explain to him that I would be going through breast cancer. Trying to tell him that mommy would be very tired for a while and that she wouldn’t be able to pick him up didn’t really seem to phase him since he’s not much of a ‘carry me-cuddle me’ sort of boy and never really was. He handled it like there wasn’t anything new or different. When I went through chemotherapy I shaved my head as my hair started to thin and sat down, bald, with him at his level and let him feel my head. He giggled, played with my scalp, and seemed to be OK with mommy being bald. I tucked on my beaubeau and let him play with it a little. My son and I don’t need a lot of words most of the time, instead he feeds off of my emotions. If I was OK with it, so was he. This time he’s a bit older, and my daughter is now three (she was an infant last time and didn’t know the difference). I haven’t told them much yet, but they’ve been coming with me to doctor appointments frequently for years now, so mommy going to the doctor isn’t something they’re phased about. In one way I think this is good, so they won’t take it as a shock or let it screw with their day-to-day lives. However I think the gravity of the situation goes over their heads, too, since really I’m just doing another doctor appointment, right? While it makes me a little sad that they don’t fully understand, I also know they’re five and three…and they don’t need to fully understand. They’re kids, let them be kids, that’s what’s important to me. I don’t want this to be an issue that they’ll carry heavily and have it affect them at school where they’re learning to read and tell colors and count. That’s what’s important right now, and all I can do is make sure I’ll be there to help them with it.
If I come up with more questions, or if you have any, feel free to ask. I’m sure I can easily write up a part two. ;)
Becca made me another lovely luminary at the Relay for Life again this year. I think I agree with her sentiment.
Lopsided Stilts 