I've been told several times "you have to good kind of cancer" or "if I had to have cancer that's the one I'd choose" To which I want to say "fuck you!" I realize people are trying to be comforting and helpful but saying things like that downplays the seriousness of my diagnosis. It's like telling someone who had a heart attack at least they didn't have to have bypass surgery, or someone who had a toe amputated that at least it wasn't their whole foot. My friend has intermittent MS and hears things like this all the time. She still has to deal with symptoms and still has MS, she just occasionally has breaks during which her symptoms aren't as severe.
I have cancer. Am I glad it's not pancreatic cancer? Of course. But I'd prefer to take the offer of the person who says "I'd choose that one if I had to have cancer" and let them have it. Because they would change their mind really quickly if they actually had to choose between cancer or no cancer. Anyone would. Add to it the complicating factor of being pregnant and I can't imagine anyone would choose this. So please, don't tell me how lucky I am, because it's demeaning. It downplays the seriousness of my situation. I will forever have a visible scar across my neck, everyone will be able to see what I've gone through.
And an update, sort of. I have another neck map ultrasound scheduled April 3. At that time I will be 24 weeks, my surgeon will see if any additional lymph nodes are compromised and/or if the tumor has grown. That gives a two week window to do surgery before I start my third trimester. They won't do surgery after that unless things get really out of hand. My thoughts on when to do surgery are all over the place, it might be easier to be recovered before the baby is born, but there's no monitoring of the baby during the three and a half hour plus surgery. I'm just going to defer to the doctors and ask favors of friends and family whenever the surgery is. So, more waiting.
I have a rare week of NO appointments next week, so I may be quiet until then. I'm still here, still growing a baby and trying not worry.
Love,
Tres
Wednesday, March 20, 2013
Friday, March 15, 2013
What's it like?
I've been asked what it feels like to have cancer. In a way it feels like nothing. It feels the same as I have for my whole life. It's not painful. Sure, it's visible to people when I point it out to them, but much more noticeable is my belly, and the baby boy squirming and kicking inside me. Cancer doesn't let you know it's there, it doesn't wiggle or move around in a way you can feel. But it's there. It's gotten into my head (figuratively) and has cast a malicious and somewhat fearful cast over my life. It's this thing that is growing in me, that is part of me but at the same time foreign. It shows that my bodies defenses have failed, that somehow all the genetic failsafes were bypassed.
I remember just last semester learning about cancer in my biology class. We learned about oncogenes and the mechanisms in mitosis that stopped cancer from growing. About the mutations that had to happen in order for cancer to form. It seemed to me then that there's so many factors in place to prevent cancer that it's a wonder anyone ever gets it. The odds seemed so microscopically small. So many things have to fail for cancer to form. Those class sessions scared me. No one wants to hear about cancer. Or say it. Especially no one wants to have it.
So how does it feel? It feels the same. It feels completely different. It feels monumental. It feels unbelievable. It feels scary. It feels like changing.
I'm thinking about so many aspects of my life that I'm not satisfied with. I thought once I'd stick with my current job until retirement. I now have a very short fuse for some of the things that happen at work, including dealing with my co-workers. Life is too short to spend it in a toxic environment feeling unappreciated. It will soon be time to move on. Not sure what the next step will be, but Monday to Friday 8-5 sounds like a good start.
I am completely satisfied with other aspects of my life. I've said it before, and will continue to say it, I would go through my life before I met Nick repeatedly if the outcome remained the same. He gets me. Not all the time, but when it counts. He balances out my anxious and slightly neurotic tendencies. He's an amazing father. The side of Nick that I see most is one rarely seen by others. He's tender and funny and caring and sweet. He brings a structure into my life that I've never had before.
And then there's Autumn, and little man. Autumn doesn't understand the gravity of my diagnosis, she's too young to know that cancer is something scary. She calls my tumor "the circle in your neck." She continues to be her normal self, loud, funny, spacy, smart, defiant. Nothing has changed for her. It's good, it's normal and normal is great. Then this little guy who I love so much. I haven't even met h, seen his face, but it's because of him I'm not totally in a funk. He is also the reason my cancer was diagnosed. My midwife was solely responsible for all the testing and such, even ended up being the one to tell me "it's cancer." If it wasn't for this tiny little boy who knows when this would've been found. I think he's going to save my life. He definitely gives me something to live for and look forward to. His presence is easing my fear of doctors, because not only do I have to see my midwife at least monthly now I have three other doctors whose offices I'll be in rotation through frequently.
So, how does it feel? It feels good. It's very humbling but I'm so grateful for the shift in perspective cancer had given me. It is what it is (as much as I hate that phrase, it's a long version of "whatever") and it is truth.
Love,
Tres
I remember just last semester learning about cancer in my biology class. We learned about oncogenes and the mechanisms in mitosis that stopped cancer from growing. About the mutations that had to happen in order for cancer to form. It seemed to me then that there's so many factors in place to prevent cancer that it's a wonder anyone ever gets it. The odds seemed so microscopically small. So many things have to fail for cancer to form. Those class sessions scared me. No one wants to hear about cancer. Or say it. Especially no one wants to have it.
So how does it feel? It feels the same. It feels completely different. It feels monumental. It feels unbelievable. It feels scary. It feels like changing.
I'm thinking about so many aspects of my life that I'm not satisfied with. I thought once I'd stick with my current job until retirement. I now have a very short fuse for some of the things that happen at work, including dealing with my co-workers. Life is too short to spend it in a toxic environment feeling unappreciated. It will soon be time to move on. Not sure what the next step will be, but Monday to Friday 8-5 sounds like a good start.
I am completely satisfied with other aspects of my life. I've said it before, and will continue to say it, I would go through my life before I met Nick repeatedly if the outcome remained the same. He gets me. Not all the time, but when it counts. He balances out my anxious and slightly neurotic tendencies. He's an amazing father. The side of Nick that I see most is one rarely seen by others. He's tender and funny and caring and sweet. He brings a structure into my life that I've never had before.
And then there's Autumn, and little man. Autumn doesn't understand the gravity of my diagnosis, she's too young to know that cancer is something scary. She calls my tumor "the circle in your neck." She continues to be her normal self, loud, funny, spacy, smart, defiant. Nothing has changed for her. It's good, it's normal and normal is great. Then this little guy who I love so much. I haven't even met h, seen his face, but it's because of him I'm not totally in a funk. He is also the reason my cancer was diagnosed. My midwife was solely responsible for all the testing and such, even ended up being the one to tell me "it's cancer." If it wasn't for this tiny little boy who knows when this would've been found. I think he's going to save my life. He definitely gives me something to live for and look forward to. His presence is easing my fear of doctors, because not only do I have to see my midwife at least monthly now I have three other doctors whose offices I'll be in rotation through frequently.
So, how does it feel? It feels good. It's very humbling but I'm so grateful for the shift in perspective cancer had given me. It is what it is (as much as I hate that phrase, it's a long version of "whatever") and it is truth.
Love,
Tres
Monday, March 11, 2013
Surgeon and follow ups
Last Monday I met with my surgeon. She told me straight off "you're going to be fine." No one had said that yet. It was good to hear. We discussed what type of surgery I would have, and what the risks were. I will have a total thyroidectomy. She also sent me for a full neck map ultrasound to check my lymph nodes. If it's spread to lymph nodes then I'll need a neck dissection as well. Surgery date will depend on the results of the ultrasound (and possible biopsy afterwards) as well as my thoughts. I can choose to have it done now, or of the ultrasound comes back clear I can wait till after the baby comes. I can't decide, but I'm leaning towards doing it sooner.
Today I had my neck map. The tech was really nice and said that she wasn't supposed to tell me anything but since I already knew it was cancer that she saw two lymph nodes to the right of my thyroid that looked questionable. They're close to the surface and she felt that I would probably get them biopsied. Told me that the left half of my thyroid looks totally normal. She said the cancer seems to be encapsulated inside a bunch of cysts, that she hadn't seen anything like that before. She said based on the proximity of the lymph nodes to the thyroid it probably won't end up being much more complicated than a thyroidectomy. Of course I'll wait to hear from my surgeon but just hearing that makes me feel better.
So more waiting. Waiting in waiting rooms, waiting in exam rooms, waiting for results, waiting to hear back from doctors about other appointments being scheduled. My whole life feels like there's waiting going on, either peripherally or immediately.
Love,
Tres
Today I had my neck map. The tech was really nice and said that she wasn't supposed to tell me anything but since I already knew it was cancer that she saw two lymph nodes to the right of my thyroid that looked questionable. They're close to the surface and she felt that I would probably get them biopsied. Told me that the left half of my thyroid looks totally normal. She said the cancer seems to be encapsulated inside a bunch of cysts, that she hadn't seen anything like that before. She said based on the proximity of the lymph nodes to the thyroid it probably won't end up being much more complicated than a thyroidectomy. Of course I'll wait to hear from my surgeon but just hearing that makes me feel better.
So more waiting. Waiting in waiting rooms, waiting in exam rooms, waiting for results, waiting to hear back from doctors about other appointments being scheduled. My whole life feels like there's waiting going on, either peripherally or immediately.
Love,
Tres
Sunday, March 03, 2013
A change of pace
So I'm not even sure where to start this. I'm pregnant. 19 weeks with a little boy. I also have cancer. Papillary thyroid carcinoma to be exact. Which, according to people (medical types who know these things) is the type of cancer they'd choose if they had cancer. Somehow that doesn't provide me with as much comfort as they seem to think it should. I want to yell, "but it's still CANCER! And I'm pregnant!" I'm still figuring out how to get my head around all of this. When I tell people I usually get a face that is probably more in disbelief than mine was when my midwife told me. Then it's pity and a lot of questions I don't have the answer to.
So here's the story. Over the last couple of years I've gained a few pounds, probably around 18. And I tried to lose them but nothing worked. Just part of getting older I thought. Then I turned up pregnant on our second month trying (yay! And holy crap that was fast) and had an appointment with my midwife at 10 weeks. She did the usual physical and when my heart rate was fast (how can it not be fast when someone you've literally just met is about to stick her hand in your vagina? Am I weird that I'm freaked out about those sort of things?) she mentioned hyperthyroidism. Then she felt my neck and there's a HUGE goiter. Like half a lime. Something I hadn't really noticed and no one else did either. She sent me for bloodwork and told me to schedule an ultrasound. She also scheduled me to get in with an endocrinologist, but the soonest was two months away. Bloodwork came back hypothyroidism. She prescribed me levothyroxine and my ultrasound was in a couple weeks.
Fast forward to that day, the tech took quite a few pictures and said I would have results in 4-5 days. The next morning the nurse called me and told me to schedule a fine needle aspiration. A biopsy of my neck. Shit. That appointment was a few weeks away. And I was scared, a bunch of giant needles in my neck? Sounds like a fun time, slightly more fun than letting a stranger stick her hand in my vagina.
The giant lump that turns out is a tumor. It's grown so slowly I like to compare it to hair. You look back at pictures from a year ago and realize how much your hair has grown. From old pictures I had this at least three years ago. Probably longer than that.
The FNA itself wasn't too bad, my nice midwife prescribed me some Ativan so I wasn't too freaked out until I was taken back. Typical surgical prep, and the doctor let me see the bump on my neck using ultrasound. To me it looked like a bunch of grapes, he described it as honeycomb. Two shots of lidocaine and a few strange sensations when the needles were taking samples and it was over. I was left with a bandaid and a faintly sore neck. No biggie. Again, results on four-five days.
Well, a week goes by, then a couple more days. I was pretty confident that this length of time meant good things. If it's bad they call you right away and ask you to come into the office, right? Two weeks after my FNA I had another appointment with my midwife. She couldn't find the results so left to find them and when she came back I asked "inconclusive?" No, papillary carcinoma. Fuck. I didn't process this right away. Went through the rest of my appointment normally, laughing and asking questions about round ligament pain and blood pressure. She told me she would call the endocrinologist (at this point my appointment was in 3 days) and the perinatologist whom I'd seen for my two ultrasounds and also a surgeon. The day went on normally with the occasional "I have cancer" thought running through my head.
Lets move forward a couple more days, at this point my week has been pretty terrible, Monday cancer, Tuesday a vet bill in the thousands, Wednesday my amazing husband breaks a tooth and needs a crown, Thursday endocrinologist appointment. She didn't really tell me anything I hadn't read in the last few days. Except she thinks I need to have surgery soon. Not after this sweet baby comes, but in a month. She would defer the final decision to the surgeon though. So here I am, pregnant with cancer. It's starting to hit me and it's scary. I announced both the baby and the cancer at the same time on Facebook and I'm glad I have a great group of people supporting me, but at the same time I feel so alone.
Monday I meet with the surgeon. I'm also thinking of calling some cancer centers to see if they can treat me and how much would it cost. In the meantime I wait. Not much else I can do.
This would be my lovely expensive cat.
Love,
Tres
So here's the story. Over the last couple of years I've gained a few pounds, probably around 18. And I tried to lose them but nothing worked. Just part of getting older I thought. Then I turned up pregnant on our second month trying (yay! And holy crap that was fast) and had an appointment with my midwife at 10 weeks. She did the usual physical and when my heart rate was fast (how can it not be fast when someone you've literally just met is about to stick her hand in your vagina? Am I weird that I'm freaked out about those sort of things?) she mentioned hyperthyroidism. Then she felt my neck and there's a HUGE goiter. Like half a lime. Something I hadn't really noticed and no one else did either. She sent me for bloodwork and told me to schedule an ultrasound. She also scheduled me to get in with an endocrinologist, but the soonest was two months away. Bloodwork came back hypothyroidism. She prescribed me levothyroxine and my ultrasound was in a couple weeks.
Fast forward to that day, the tech took quite a few pictures and said I would have results in 4-5 days. The next morning the nurse called me and told me to schedule a fine needle aspiration. A biopsy of my neck. Shit. That appointment was a few weeks away. And I was scared, a bunch of giant needles in my neck? Sounds like a fun time, slightly more fun than letting a stranger stick her hand in my vagina.
The giant lump that turns out is a tumor. It's grown so slowly I like to compare it to hair. You look back at pictures from a year ago and realize how much your hair has grown. From old pictures I had this at least three years ago. Probably longer than that.
The FNA itself wasn't too bad, my nice midwife prescribed me some Ativan so I wasn't too freaked out until I was taken back. Typical surgical prep, and the doctor let me see the bump on my neck using ultrasound. To me it looked like a bunch of grapes, he described it as honeycomb. Two shots of lidocaine and a few strange sensations when the needles were taking samples and it was over. I was left with a bandaid and a faintly sore neck. No biggie. Again, results on four-five days.
Well, a week goes by, then a couple more days. I was pretty confident that this length of time meant good things. If it's bad they call you right away and ask you to come into the office, right? Two weeks after my FNA I had another appointment with my midwife. She couldn't find the results so left to find them and when she came back I asked "inconclusive?" No, papillary carcinoma. Fuck. I didn't process this right away. Went through the rest of my appointment normally, laughing and asking questions about round ligament pain and blood pressure. She told me she would call the endocrinologist (at this point my appointment was in 3 days) and the perinatologist whom I'd seen for my two ultrasounds and also a surgeon. The day went on normally with the occasional "I have cancer" thought running through my head.
Lets move forward a couple more days, at this point my week has been pretty terrible, Monday cancer, Tuesday a vet bill in the thousands, Wednesday my amazing husband breaks a tooth and needs a crown, Thursday endocrinologist appointment. She didn't really tell me anything I hadn't read in the last few days. Except she thinks I need to have surgery soon. Not after this sweet baby comes, but in a month. She would defer the final decision to the surgeon though. So here I am, pregnant with cancer. It's starting to hit me and it's scary. I announced both the baby and the cancer at the same time on Facebook and I'm glad I have a great group of people supporting me, but at the same time I feel so alone.
Monday I meet with the surgeon. I'm also thinking of calling some cancer centers to see if they can treat me and how much would it cost. In the meantime I wait. Not much else I can do.
This would be my lovely expensive cat.
Love,
Tres
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