I’m being discharged from the hospital. The iv is out – I’m just waiting to sign papers. I’m starving. I’ve been here for five hours. And I just found a toe nail in the bed. It’s not mine. (And this is the hospital where I will be having surgery!)
Expenses for today: $5 parking, $30 ER copay.
That’s a lot of acronyms. I am currently live blogging from the ER at the hospital where I came for my CT scan and MRI this morning. This is how I ended up here.
I came to the hospital at 9:30am for my CT scan – the scan is meant to determine if the tissue in my abdomen would be useable for a tissue transfer to make some new breasts. The scan was at 11:30; I was told to come two hours early to drink the contrast dye. I took this video on my way into the MRI/CT area of the hospital because I think the long basement hallway to nowhere is kind of humorous:
When I arrived at 9:30, the receptionist told me that there’d been a mistake – I didn’t need to drink the dye, so I could just go in for the scan. Even better, they could take me immediately. First I had to fill out the usual paperwork – once again, a list of all my meds. But this time, for the first time, I checked ‘cancer’ on my medical history. That was definitely a surreal moment. Usually I just put a line down most of the ‘no’ column of all the diseases and health problems. I check ‘yes’ for migraines, depression, anxiety, and arthritis. I suppose I have to add cancer to that list now.
I was brought back and given an IV, during which I mentioned that I was going to have the MRI the next day; the nurse said that was silly – why come back and get a second IV? She said she’d check to see if they could do the MRI as well. As luck would have it, they were able to take me for the MRI too.
I’d never had a CT scan before. It is a strange experience. You lay on a table and they put you through the hole of a enormous donut-shaped machine. While you’re in there, you can see the innards of the machine spinning around, and the table you’re laying on moves back and forth. It was kind of cool, although I eventually decided to close my eyes – because it was so close to my face, I was worried I’d get dizzy. Toward the end, the nurse said she’d be injecting the contrast dye into the IV – I’d feel warm and like I had to pee. This was an understatement. It felt like my entire head was filling with warm fluid, starting at the back of my throat. I thought it might come out my mouth and my eyes. I didn’t feel like I had to pee – I felt like I was peeing. It felt like warm liquid was between my legs. And then, within about 30 seconds, the whole sensation was gone. Which was good, because I was pretty sure I was going to throw up if I had that feeling in my mouth any longer.
They took me right from the CT scan into the MRI room. I’ve had breast MRIs several times before. I laid down on the table on my stomach, breasts hanging into an opening. I rested my face in a cushioned head rest, and then they slid the table back into the MRI machine, which is really a narrow tube. This scan takes about a half hour. The machine makes loud noises and beeping sounds, but they give you ear plugs so it’s not so bad. About halfway through, I started feeling some pain in my chest – it was hard to inhale all the way. It felt like I had swallowed a lot of chlorine-water. I didn’t say anything though – I figured it was just from the pressure of my ribs pressing into my lungs from laying on my stomach. They injected the contrast dye – this time, it was just a cool sensation in my arm. The scan was over a few minutes later, she removed the IV, and I was sent back to the changing room.
I still had the chest pain though. I got dressed, put on my coat, and headed out the door. But then I thought about it for a minute – I didn’t want to get in the car and pass out. My breathing felt weird, and I’d just had who-knows-what injected into me. So I mentioned to a passing nurse that I felt chest pressure and was having trouble breathing.
Within seconds, the cavalry arrived. They “called a code” of some kind, and no less than 15 people showed up. I was hooked up to wires, machines, oxygen, the IV went back in (two sticks in my hand and one in my arm!). It was kind of overwhelming, and I couldn’t help but laugh a little. I thought they’d just give me a glass of water and tell me to sit and rest for a few minutes. But apparently, you say the words “chest pain” in a hospital and they do not kid around.
I was brought up to the ER, asked again about my health history (again I needed to provide a list of my meds), and again I had to say I have cancer. And now I’ve just been here in the ER bed for an hour or so. The doctor has been extremely nice – she seems as stumped as I am. At this point, she’s checked the CT scan (since it was of my chest and abdomen) and she didn’t see anything unusual. She’s waiting for my blood work to come back. When I asked her what she thought happened, she said it could have been a reaction to one of the dyes. She said that she’s also concerned about a blood clot because I have cancer, which I guess means that’s a higher risk now. They’re being extra cautious in keeping me here.
I don’t even know what to say about this. It seems excessive – I feel fine now. Still a bit of pain when I inflate my lungs all the way, but I’m sure I can drive myself home and be ok. But it’s a bit weird being attended to as a cancer patient. I really don’t even think of stage 0 as actual cancer! But I guess all the doctors do. So it’s definitely real.
Here’s a frustrating email conversation between me and my husband’s second cousin. Did I mention his family is BRCA1+? That’s a whole other post for another day. For now, you just need to know that his cousin is having a bilateral mastectomy with DIEP reconstruction in May.
Cousin: Sorry to hear that immediate reconstruction may not be an option. It certainly complicates things and doesn’t offer the relief of having “it” over with. Do you mind if I ask why?
Me: My boobs are pretty big. I want to go from a DD to a C. But the plastic surgeon I saw said there’d be so much extra skin that to cut it off could leave too big of an incision (which could easily open rather widely). And it’s too much skin to just fold over the tissue – he said it would require a whole second surgery to make it look normal (more significant surgery than the DIEP phase 2 surgery which is just touch-up and nipple-adding). I am seeing two more plastic surgeons, so we”ll see if they agree.
Cousin: Interesting — I am even bigger than that and also want to go to a C and my plastic surgeon did not mention any concerns like that at all. And I know another woman who has had DIEP (by my plastic surgeon) and she said she was even bigger than I am now and she did immediate bilateral reconstruction with no issues. She had it done before starting chemo. Don’t give up hope. I know you wouldn’t come to Boston for your surgery (I wouldn’t if I were you) but here’s his practice’s website just for reference. http://www.bostondiep.com/
Me: That’s why I’m meeting with two more plastic surgeons. I’ve never heard of this issue, and I knew I wasn’t the only person who’s ever had it!
The email from her just confirmed my original suspicion – I don’t think Dr Nguyen really wanted to take my case. It was just the impression I got while he was examining me. So, I’m extra curious now to hear what the other plastic surgeons have to say.
On the other hand, the idea of just having the mastectomy is tempting – it means only a few weeks off from work, less pain – it’s just easier in general. Really, it’s sad, but I’m most concerned about being away from work for so long. I just don’t think it looks good – I’ve only been there one semester. Having the immediate DIEP surgery means I’ll basically be out the whole semester. I have so many projects and programs I’m running this semester – I would hate to lose the momentum I worked really hard for last semester. I suppose I should do what’s best for my body, not my job, but a tenure-track job is hard to come by and I am so grateful to have it! I don’t want to risk it even if it is a major health crisis, of sorts.
As much as I’ve complained about how often I’m asked about my family history, I’ve recently become more interested in it. My first cousin friend-requested me on Facebook two weeks ago. Because my father and her father (brothers) were estranged most of their adult lives, my cousin and I never had a relationship. Through some messages on Facebook, she disclosed that she’s BRCA2+ (like me) and recently finished treatment for stage 1 breast cancer. It’s so strange that she contacted me just as I started going through this (when she first messaged me, it was a week before the biopsy). I just can’t believe how many people in my family are affected by this.
We have a pretty comprehensive family tree on Geni, but none of our medical history is in there. So I drew a sketch of one myself and determined these numbers:
My grandfather had two sisters, and between the three of them, there are 18 blood descendants; my grandfather and his sisters all died of cancer. That’s 21 people total I’ll be referring to. Of course, my grandfather and his sisters were not tested for BRCA, but my grandfather certainly had it as did at least one of his sisters (her daughter is BRCA2+). Nine of us have been tested for the gene; seven of us are carriers. Eight of the 17 of us who are living (my father’s brother was BRCA2+ and died from pancreatic cancer in 2009) are under 25 (four are teenagers and four are under age five) and haven’t been tested yet. These numbers might be significant, they might not be. I just wanted to see it laid out. I’m definitely curious about other families. Genetically, there’s a 50/50 chance of having the gene if a parent has it – but in our family, it seems higher (78% of those of us tested are positive).
The strange thing is that the cousin who friended me on Facebook is only 30 years old, and I am only 36. Up until now, no woman in my family has had breast cancer until the onset of menopause or later (this is typical with BRCA2). This is why I had been waiting to have any surgeries – I thought I was safe for at least ten more years. Another cousin of mine is going to research this – perhaps BRCA2 carriers are at risk at a younger age. If that’s the case, genetic counselors need to warn us.
I swear, my phone has rung no less than five times today – each time it’s the UPMC automated line reminding me of various appointments I have in the next few days. I keep a calendar people – stop calling me.
Blogging BRCA 