Reason number 1,500 that I hate cancer – There’s no such thing as “Cancer Free.”
Traci has been “cancer free” since October 2002 when she completed a successful Bone Marrow Transplant, but just because her medical chart lists her as no longer having cancer, doesn’t mean that she’s free of it. I laugh when I hear the term “cancer free” because the reality is, she’ll never really be free of cancer. Every day, we’re reminded of the cancer that once was, and the impact that it’s taken on her body, and subsequently the difference that it’s made in both of our lives.
When I met Traci, she was diagnosed as “healed.” She’d already gone through the tough crap, and was more herself again, at least, the pre-cancer self that is. She had a central line that was surgically inserted to give her doctors access to her veins, making it easier to get blood, administer antibiotics, etc. instead of having to poke and prod her like a human pin cushion every time they needed something.
Because here’s the deal, once you’re deemed “cancer free,” it just means that there is going to be countless medical visits for follow up while administering endless tests to see where you’re at. It means (at least in Traci’s case) taking a life time of medications every morning and every evening to prevent the cancer from recurring, and to help re-build the antibodies that keep people healthy…the same ones that they basically had to kill to get her close to death so the bone marrow transplant could work. And those medications are only a small reminder. Every pill is a reminder. Every doctors visit, every x-ray, every blood test, every look that comes across with sorrow…it tells us that now a life exists. One that is changed, and grateful for the life, but not free of the cancer. Just, forever changed by it.
Traci has a condition that is called Graph vs. Host disease, and it struck her harder than most. Her case was diagnosed as “Extremely Rare” and “Extremely Severe.” But the really severe symptoms didn’t present until several years after the bone marrow transplant, and it’s severity began a few years after we had been dating. The condition began by attacking the elasticity of her skin, making her unable to bend her right arm at the elbow. Then it happened at her ankles, and then at her knees, causing immobility, and leaving Traci with the inability to walk.
Being relegated to a wheelchair for what will likely be the remainder of her life was one thing, but her body continued to attack itself, eating away the skin on her legs. I’d post pictures of it, but it’s pretty graphic, and she’s asked me not too. Basically, if you’ve ever seen an animal take a bit out of human flesh and tear it away from the bone, what’s left is basically what her legs began to look like. The skin just ate away at itself, cause large gaping wounds on both of her legs. It was enormously painful, and it was difficult to watch her go through the weekly dressing changes on the wounds, not to mention the daily torture of having nerve endings exposed. It got progressively better over time, and as the GVHD began to burn itself out, the wounds began to close. Her legs look pretty damn good today considering where they were a few years ago. They’re not 100% healed, but damnit if they’re not close.
Two issues have presented themselves over the last couple of weeks which has made life more nerve wracking and emotionally trying. Firstly, a couple of weeks ago as Traci was unwrapping her dressings and preparing her legs for her weekly dressing changes (very standard), she found a new lump. Just what a cancer survivor needs to find. It was hardened in the dressings during the course of the week, and a little bigger than the size of a quarter. So it started obvious questions of “what could this be.”
We first met with her primary Bone-Marrow Transplant physician who’s the big worry-wart when it comes to this stuff, and she wasn’t quite sure what it was. Her thoughts were that it was probably just scar tissue, though she wanted the opinion of the vascular surgeon that oversees her dressing changes. When the surgeon looked at it, his response was “Well, it could definitely be scar tissue. But I’ve never seen or felt scar tissue like that before.” Very reassuring.
So the surgeon gave us two options. Option 1) We could watch it closely. Because she is already seen weekly by the wound care nurses to dress her legs, and this is right where the wounds are, we could monitor any changes with the lump and watch it to see what happens. Or Option 2) Biopsy it. This made Traci weep, and rightfully so. The Doc said, “well, if you’re worried about the pain or new wounds from the biopsy…” and he was cut off by Traci saying, “honestly, its not that. In order to do the biopsy you might need to put in another central line.” The surgeons advice was, lets go with option number 1 for now, and lets see how this goes. A couple of weeks have gone by, and no changes have been noted from the lump, so the basic assumption is simply scar tissue for now, until something changes. We all breathed a collective sigh of relief for the moment, but the question still lingers…what if? Well, we’re keeping a close eye on it till then.
As if there wasn’t already enough piled on, there were the events of this week. One of the great benefits of taking 6 different types of medications since a bone marrow transplant is the side effects that the drugs have on your body. One of the great side effects that have happened with Traci is a rapid erosion of her teeth. She’s had to get a few root canals, and other fun dental procedures in the past to combat this, but her teeth are basically rotting in her mouth to some degree as a result of how hard the meds are on her teeth. This week, an erosion came on swiftly and severely causing her to have massive pain in her gums. We were able to get her an appointment to see a dentist on an emergency basis, but the dentist really couldn’t do much other than look at it, and provide some assumptions on some ways to approach the problem. The x-rays revealed that the tooth was so eroded that even a root-canal would not do much of anything. There just wasn’t enough there to work with. So the Dentist recommended that Traci get antibiotics for the infection in her gum-line, and referred her to a specialist.
Basically the best option would be to have all of Traci’s teeth pulled out, and replaced with a set of dentures. While that’s probably the best and most desirable option, there’s this little fact that it costs a bajillion dollars and….oh yeah…isn’t covered under her medical insurance. We have Dental insurance which pays for a small percentage, but really, the dentures could end up being thousands, plus the cost of extracting all of her teeth…and yeah…we don’t have that kind of money.
So for now, Traci is just taking some antibiotics that will hopefully help with the infection and clear it up so the pain goes away. The pain started Thursday, and the antibiotics came on Saturday. But here we are on Tuesday and her mouth still hurts. It sucks watching your partner have to endure this kind of crap.
This is just kind of a small portion of the junk that’s been going on. For those of you that have had to deal with cancer in the past, I’m sure that you get what this is all about. And for those that are familiar with the term “cancer free,” well….it’s a misused term. We’re reminded every day, in everything that we do, everywhere that we go, and in so many ways…. that we’ll never be free of that cancer. Just some day’s will be better than other days. So it’s up to us to make the best of the good days, and to really celebrate them. Because while we will never be free of cancer, it doesn’t have to own us either. We’ll be altered forever, but that doesn’t mean we can’t and won’t have our joy taken away. God willing, things will find their place, and we’ll come through this in the end. Perhaps stronger than when we went into it.