Right now I have a paraganglioma in my right neck. It’s called a carotid body tumor because it is wrapped around the carotid artery at the point where the artery splits to provide blood supply to my face and my brain. I had tumor removed from the same location on the left side in 2005.
Last fall when I had my follow-up at NIH, the carotid tumor hadn’t grown from the previous year. Their recommendation was to continue to watch and wait until the tumor grows to 2cm, at which point they would recommend surgical removal.
Even though surgery sucks and I wouldn’t choose to have elective surgery without very careful consideration, this recommendation is always a little unsatisfying. Something in my brain tells me that the right thing is to have it removed—like yesterday.
Makes sense right? So much of the rhetoric about cancer is battle-oriented. The things we use to fight cancer are described with the same words used to explain unforgivable weapons of war: chemo (chemical weapons) and radiation (the nuclear option). So the natural reaction, when one finds out one has an invasive species present in her very cuerpo, is to call in the Marines for a midnight stealth attack.
I point this out because there is a psychological burden of living with the knowledge of such a thing. I’ve had a paraganglioma on my pericardium (the tissue surrounding my heart) for the past 14 years. Fourteen years. It was terrifying to learn it was there. On my heart of all places!!! Not an expendable organ.
The recommendation was always to monitor it because the surgery to remove it would be a life altering thoracotomy, meaning a surgeon would have to crack my chest in order to remove the tumor. This is a surgery that I would be feeling for the rest of my life.
So I got used to the idea that I was going to live with this little tumor on my heart. That I would continue to watch and wait and hope and dread. And I’ve gotten pretty used to that little guy on my heart. I don’t worry about him too much anymore. After all, he’s been there for at least 14 years and my heart seems to go on just fine with him nestled into my right atrioventricular groove.
For years there was a question about whether this tumor on my heart was a metastasis. (A metastasis is when a tumor kicks off cancer cells into the blood stream or lymph system and they travel to another part of the body where they set up shop.) I don’t think anyone really knows the answer to that. The pericardium is a location where mets frequently show up. I’ve read all the radiology reports on it over the years and some radiologists accusingly and decidedly referred to it as a metastasis. Others were more careful about applying that label.
Also, for years, there was an unanswered question about whether it was inside or outside of my ventricle. This seemed like important information to me but it took a long time and a lot of MRIs to get an answer.
I had it imaged once at a hospital in Boise. It took a big effort to get the cardiac MRI scheduled between my insurance and my doctor, who was located in another state. I had a very personable radiologist call me after the study. She was the one who first told me it was located outside of my ventricle in the right AV groove. “It’s nestled in there in a spot where I think it’s very unlikely to cause a problem,” she told me. I remember feeling so relieved. Why did I feel so relieved? Maybe it was just nice to have something explained. There was still the question of whether or not it would grow one day, but at least I had this one little piece to the puzzle.
So I’ve been living with this cardiac tumor for years and I really don’t think or worry about it, except when I have to have it imaged and, honestly even then, I just assume that it’s going to be there and be unchanged.
Oh, but here’s another side note—every year when I go for testing, people tell me that they hope I have the miracle of the tumor disappearing. I say this cautiously because I know, like deeply in my heart, that those people mean very well. But I’ve always hated this. I think it’s because I’ve never really believed that would happen for me. I realize it happens sometimes. And it is a freaking miracle. And it IS possible. But when people mention this to me, it just makes me feel like I’m lacking faith and maybe if I had more then I would earn the miracle. Or maybe even would have already earned it, which would be a big favor to everyone around me because then they wouldn’t have to worry about my health, which is something I never asked for anyway but, hey, I have no control over that—except maybe if I had more faith….
Ugh. That feels ugly but it’s true.
Here’s the miracle I hope for: That I can go on living with this thing inside of me and not let the knowledge of it keep me from the joy in my life—or maybe even let it increase the joy in my life. That’s the miracle I want.
Which leads me back to my life right now. So I know I have this neck tumor. Since I learned about it, I’ve noticed I’ve been having more sinus problems. Fact: I also started surfing around that same time. So initially I chalked it up to that.
But those symptoms have been increasing in frequency and severity: sinus congestion, headaches, feeling hot, insomnia, and paresthesias on my scalp, (I would describe it as feeling like all the hair on my head is standing up—I used to think this happened to everyone and was surprised to learn that it’s a super power of mine). Oh and also, having low body fat. I feel like my metabolism is revved up. When I had my first abdominal surgery back in 2005, the surgeon remarked on how little abdominal fat I had. I’m not saying this to brag, I just think there might be some relationship between this and the tumors.
Something you should know about this list of symptoms is it’s non-specific, meaning they don’t point to any particular diagnosis. The sentinel symptom would be hypertension, but I’m not having that. Non-specific is annoying. Anyone out there with thyroid issues or fibromyalgia or lupus or any other number of conditions with non-specific symptoms can understand what I’m talking about. We all encounter these little discomforts. They are the kinds of things that if you punch into WebMD, you’ll get the full gamut of diagnoses from seasonal allergies to cancer.
That’s actually where I’m at right now. A couple of months ago I found myself taking allergy medication and OTC headache medication more than half the days in the week. I stayed out of the ocean for more than a month in case that was the cause, but still, things didn’t improve. I’m doing acupuncture and taking Chinese herbs to try to take the heat out of my liver and relieve the sinus congestion (still not sure what that means or if I’m even a believer in this kind of thing, but I’m willing to try because it seems to help and there aren’t side effects like I have with the sinus medications).
I either have seasonal allergies or it’s my cancer. Maybe there’s a third option but let’s leave that for simplicity’s sake. This is such an annoying problem because it takes time and money to figure it out and it’s kind of a lose/lose situation.
Let me explain. If it’s more tumors or tumors that have grown, that’s a drag. In some ways it’s nice because there is a potential light at the end of the tunnel. If the tumors can be removed, and surgery doesn’t leave me too maimed then I might go on for another 10-15 years in relative comfort as I have in the past. It fits in with the war paradigm, where we can go in and carve those suckers out and be done with them—victory!
If it’s seasonal allergies, you might think that’s a win—and I’ll concede that it is a win of sorts. But please let me acknowledge the downsides. First, seasonal allergies are annoying on their own (isn’t cancer enough!?!? I can’t be bothered with mundane medical problems!). Second, there is a continued psychological burden associated with seasonal allergy symptoms perpetually showing up and asking me if they are really related to the tumor in my neck. It’s a question that will always live in my mind because this is how I was feeling before all my tumors were found. Could it be correlational? Absolutely! But it was actually a sinus surgery to treat these very symptoms that prompted the discovery of my high blood pressure and then the tumors causing it. So the correlation feels real to me.
That’s the thought that has been buzzing through my head lately: This is how I used to feel before they found all the tumors.
And here’s the other terrifying part—what if I get the blood work and the MRI and it all comes back normal? Then what. Everyone will tell me how that’s great news. And it is. But it’s also just another chapter in the story that is living with cancer. Unanswered questions. Wondering if that random symptom—pick something, anything—is nothing or cancer. Am I hypochondriac if I ask for a work up? Am I irresponsible if I ignore it? There is lots of drama in my mind about this part of things. For whatever reason, how I respond to these little terrors seems to carry the enormous weight of saying something about my character. I’m still working that out.
So let’s go back to the miracle I’m hoping for: That I can go on living with this thing inside of me and not let the knowledge of it keep me from the joy in my life—or maybe even let it increase the joy in my life.
I think it’s possible. I have to get comfortable with the fear, comfortable with the unknown, over and over again. Day after day. Accepting that it is part of the journey–but only part. That is living with cancer. But isn’t that also life?
I have often had your same thoughts, living with MS is always with me, it never goes away, waiting for the moment I am bed ridden. I have received blessings of health and strength, I now have to discover what the Lord’s definition of health and strength is for me. So instead of allowing the monster to take over, I am taking the monster and controlling him. Each day is a blessing, each moment with my family and friends is a miracle. Every stitch in a new quilt brings joy, feeding my little family of squirrels brings a smile to my heart. That is my new “health and strength.*
Huggggggsssss to you each day as you live with your monster.
Thanks for sharing your experience, Lona. I think I’m coming to the same conclusion. It’s really sinking into the little moments. That’s all we have. xo
Hi Michelle, I was your mom’s college roommate way back when. I really enjoy your posts and your way of thinking things through. Much admiration for that. I wanted to tell you I know how you are feeling, not exactly but very similarly. I was diagnosed with chronic lymphocytic leukemia when I was 50. This is “the best leukemia you can have” so I have been told. It is a “watch and wait” situation similar to yours. When I was first diagnosed I was actually embarrassed to tell anyone about it because I have had some other big trials in my life and I kept thinking, wow what did I do to deserve all this and other people will be thinking that too, which I know should have been the least of my problems, and my faith must be sorely lacking, etc. So, your story really touched me. I’ve gained faith through my journey and have come to feel it has been/is a positive experience for me. I will be thinking of you and pray your miracle will happen. Lots of love.
Thank you for sharing, Renee. I think your point is the main reason I wanted to share this. There’s a whole dark side to this that I felt really ashamed of for a long time. I wasn’t really sure what to do with it. Now I’m finding out that I think it’s quite common. Thank you for adding your voice and the same love and prayers to you!
Health problems suck. The anxiety it is causing you sucks. I hate that it is taking away choices in your life.
I’ve learned a thing or two about rolling with it. One of the things is that when this kind of thing pops up, it’s either something or it’s not. It’s always been nothing, except for the one time it was something…not sure where that leaves me but it’s either something or nothing–haha!