Ok so as I mentioned I had major stomach cramping the week before last. It lasted for days and when we called the doc on call he felt it was probably the steroid so he told me to resume my old acid reflux regimen. So I went back on my 40mgs of omeprezole. Now the reason I stopped taking it was because it interferes with Tarceva the chemo pill I take every night. But turns out I can take it but it has to be 12 hours apart from the Tarceva. Ok, no problem.
Well I kept getting worse, so I called the next day and the other doctor on call felt I needed to get to the ER to get hydrated since drinking was becoming exceedingly difficult for me. So we decided to head to Urgent Care at Sloan Kettering's main hospital on 68th street. It's basically their little ER, but it's tiny and finding it requires navagating a maze. But we figure it's the best place to be cause all they have to do is type in my birth date and they'll know everything about me. And that's exactly what happens. It's a Sunday night and it's empty so I get a room (well curtain) immediately.
So they give me some fluid and try to decide whether or not to give me a cat scan to look for an ulcer. The doctor who sees me is lovely, had the most adorable little preggo belly and she's sweet but thinks it's the meds making me sick. She's right, I just don't want her to be as mentioned in the last blog. Nothing she gives me works, but everyone in my family is exhausted and I feel like I should go home and tough this out. The doctor decides that since drinking is causing me pain, she decides the cat scan is a mistake (cause I'd have to drink the contrast fluid) so she only gives me an x-ray to confirm there's no blockage and sends me home.
Fortunately for me I felt worse the next day, Monday March 14th. So I call the oncologist cause I want an antibiotic, which they find amusing. So they make me come in, they see I look awful and decide I need to be admitted. And where do they send me? Urgent Care on 68th street. Only this time the place is jumpin'! And it takes them 3 hours to give me fluid. And they send me to the EXACT spot I was at the night before. So now they give me the cat scan. As soon as I see the giant thing of fluid I realize what the doc the night before was saving me from. But I'm convinced there's something really wrong (I'm right about that, I'm just wrong about where the problem is) so I gulp it down.
So I'm in the cat scan machine and not only do you have to drink that red shit, I also have to have dye injected into my port too. So I take the two non-dye scans and then the nurse comes out to inject the dye and she asks me something strange. "You have a catheter? (in my heart)" "Um no." "Oh ok."
Didn't think anything of it. I get sent directly to my room and I meet this lovely nurse who grew up in my neighborhood. Every single nurse I meet while I'm in the hospital over the next 4 days are AMAZING! And I'm not kidding about that. I'll explain more in a sec...
So my husband and mom head home and for the first time since my diagnosis on January 20th (and so far the ONLY time since) I have been alone. I mean I literally have had someone watching me for 2 straight months. And you know what I do? I sleep like a MoFo! I mean I'm still being watched, but my family finally has a break sorta (my in-laws are watching Sophia) but I'm hoping everyone is getting sleep.
Now the nurse and the nurse's aid are concerned that my BP is a bit high, but I explain it's been high since they put me on the steroid dexamethasone. Which for the record raises your BP (among the 9000 other side effects, the list goes on for pages and if you read them all you'd never agree to be on this medicine, but I'm on it so my brain doesn't explode so what can I do).
When I wake up the next morning I meet another nurse, Lesley. Gorgeous, because it's required to be gorgeous to work at Sloan. And she asks "you have a catheter?" and I say "nope" and she says, "oh I thought I read that on your chart". Now you'd think I'd be catching on by now, but I'm so not.
After breakfast a wheel chair rolls into my room and I hear Lesley say, "the doctor ordered an echo cardiogram for you, we're going to take you now." Now I'm thinking, wow that's great while I'm here they are going to check about my high BP. Yeah, no.
So I go to echo cardiogram which is just a sonogram of the heart, but it's tough when you're a woman cause we have tits and tits get in the way of imaging the heart. And I also have flab so that doesn't help, so it takes a long time. But then the technician asks... Anyone, anyone? "You have a catheter?" And I finally figure out something is really wrong, why do they keep asking me this? So I say "no" and she says "ok, what is your diagnosis?" and I say "lung cancer" and she says "ok". So now I'm freaked out.
When I'm done she wheels me into the hallway and says "wait here if we need more images I'll get you if not I'll send you back to your room." As I'm waiting the doors swing open and John walks in. I tell him, dude they found something. He's like what do you mean? I'm like, I don't know man, but there's something in my heart or an artery or something.
When I get back to the room the nurse practitioner, Amy, immediately comes in and tells me what's going on. Which is great cause I would have been losing my mind if she hadn't. The cat scan guy the night before thought he saw something in my heart, the doctors think it's nothing, but thought they should verify it with an echo cardiogram before they completely dismiss it.
I see my oncologist Dr. Krug and he's convinced it's nothing. He's more concerned about the belly pain, which is still an issue and thinks it's the tarceva. He's totally right about the tarceva but TOTALLY wrong about the heart.
Later that day his colleague Dr. Miller comes in with Amy, the echo cardiogram confirmed something is in my heart, I have to see cardiology to determine what it is. But the two possibilities are blood clot or cancer. Ugh. All I know is, I felt stupid for going to the hospital for silly belly pain and now I owe an eagle eyed cat scan tech my life cause he spotted a huge problem when he was only supposed to be looking at my stomach.
So cardiology comes in and he's this lovely young doc who reminds me of our friend Sam who we went to school with, who also just happens to be a doctor. I immediately like him, he is easy to talk to, honest and I understand everything he is saying. No doctor speak. He draws a pic of my heart and shows me that in one of the top chambers there's a 1cm mass. (This whole drawing my organs so they can show something wrong with it, never gets old). Now because of the older January scans that I took, esp. the pet scan, the likelihood that it's cancer is small. This makes me happy. 1) who the fuck wants cancer in their heart? 2) and if they missed it there where else did they miss it?
It's most likely a blood clot, but they have to really look at the scans and determine for sure. So he was just telling me what they were looking for. So he leaves to go study my scans. A few hours later he and his attending (I think that's what she was) come in and say in their opinion it's a clot but the scans aren't great images. They are going to consult with radiology to see if they think I'll benefit from a heart MRI. So they are going to conference with them tomorrow, until then I'm going to just sit tight and wait.
So while I'm waiting I work out my belly situation, Dr. Miller likes my attitude. I'm in no rush to get home, I'm taking the clot news well and he's impressed with me. UNTIL he asks "have you had any diarrhea today?" "Not yet." "Um, way to be positive!" Ha!
So after we adjust a couple of meds and I talk to the nutritionist the belly starts to work itself out. Though one funny thing happens, I have a high heart rate (pulse). I always have no one has ever addressed this before because my BP is usually 120/80. The nurses are rather shocked by it so they hook me up to a heart monitor for two days. Now as you all are painfully aware, I have vasovagal syncope. So my heart rate goes up when I try to stand up when I'm dehydrated especially. So every time I go to the bathroom I set of the alarm and the nurse comes running. Well she quickly gets used to me and every time I get up I hear the alarm go off and she yells, "she's just pee'ing it's ok!" It was quite funny.
Now the reason the nurses are amazing is they take wonderful care of you of course. But every single one of them, after a doctor or nurse practitioner came in to explain something to me, they came in after them to make sure I understood what I was told AND to make sure I was emotionally ok. Yeah, that's incredible!!!
Ok so while they are confirming there's a clot, there's another issue. Now the way you resolve a clot like the one I have is you basically wait for your body to dissolve it, but you inject yourself with blood thinners so you 1) don't develop any more blood clots, which I'm at risk for being a cancer patient and all and 2) so the one you have doesn't grow any bigger. And the blood thinner they give me? Good ole Lovenox! The one that helped me bring Sophia into the world. I'm like piece of cake dude!
Well not quite, before I can take any anticoagulant, I have to talk to neurology. Cause I have these mets in my brain and they have to make sure I am not risking any brain bleeding. So they send me a neurologist. Of course she's young and gorgeous, Sloan may be taking care of me, but they seem to like to make me insanely self-conscious too! She's sweet and asks me all kinds of questions about my symptoms and she's happy I had no neurological symptoms at all, that all I had leading me to my cancer diagnosis was a cough. Then she says, "I have to ask you some silly questions but bear with me."
"Who is the president?" "Obama" "Who was the last president?" "Bush" "and before him?" Pause, why do I want to say Gore? "Um, Clinton right?" "And before him?" Is she kidding me, I can't remember what I had for breakfast! "Bush senior". My husband the high school history teacher is looking at me like I'm such loser for taking so long to respond, but really, you try being dehydrated and learning about a brand new major medical problem and see how well you do with your political history! Then she tells me to remember three words "piano, green, honesty" which I say to myself over and over again cause I'm not getting this wrong! I have to do a lot of motor things, which are easy. I have to move my eyes a certain way, I have to do weird things with my feet. She wants me to lift my legs and now I'm like, honey I can't do that normally! Then she asks me to recall the three words "piano, green, honesty!" Whew! She then hits a tuning fork and puts it on my hands and feet individually and each time I have to tell her when the vibrations stop, they never stop so I never say yes. And she says "wow you are doing awesome!" So whew! My brain is ok! And I get neurology's ok to have the Lovenox.
The next morning the entire neurology department stops in to say "hi!". Literally, they said nothing else, just shook my hand and wished me well. I'm sure that visit cost my insurance 600 bucks.
Oh so then it's Thurs and I'm still waiting for my heart MRI, which I'm convinced will be a cake walk. Oh boy, was I wrong. It's a nightmare. I'm in the MRI machine for about 90 minutes and I have to hold my breath 18 seconds at a time for about 50+ times. It's awful, I'm wrapped like a mummy, I have stuff on my neck and chest and I'm sweating like a son of a bitch. I come so close to squeezing the panic button, it's not funny. This is by far the worst test I've ever taken! I've never been so happy to be done with something. But when I get back I'm a big shaky mess and they are like, ok you can go home! And I'm like right now? Can't I take a nap or something?
So I go home on Thurs. afternoon with a new prescription and a new problem. On the one hand I keep learning that I have to keep "re-surrendering" to the universe. On the other hand if I didn't have that belly pain I would never have known about this blood clot and goddess only knows what would have happened then?
So Sloan has room service. You can order whatever you want, whenever you want. The menu is off the hook. If you can eat, you can eat like a king. My belly was a mess so I ate their blandest things. And they will really work with you, it's great. Esp. once the nutritionist taught me how to eat. They also have patient activities like knitting classes, makeup lessons, dream catcher workshops, mixers and dances. It's crazy! You apparently can also get your hair done too. I couldn't stand up for very long so I didn't get to enjoy any of it, but it was cool that it was there.
Also since my symptoms were treatment related I could have any digestive meds I wanted and the nurses were always making sure I wasn't suffering needlessly. I knew everyone by name and they knew everything about me. It was awesome. I mean no one wants to be in the hospital, but I didn't mind being there and I was really in no rush to get home. Sloan puts SIUH to shame. TO SHAME YO!
Well I'm home now and I'm feeling much more like myself. We also have some plans to get through the next chemo and hopefully we will head off any possible dehydration at the pass this time. And now that I'm more educated about my digestive system I will hopefully be on top of it this time and will finally get the hang of this whole I have cancer thing!
As for the blood clot, I'll likely have a scan or sono of some kind in the next month or two to see how it is. For the record it was likely caused by the port. The port I wasn't thrilled about getting. No one told me that a blood clot in the heart was a risk. I'm not happy about that. But I do like the port and I prefer it to them poking my veins, but really, someone could have mentioned the whole blood clot thing! I'm a little pissed.
But beyond that, what can I do, it is what it is. And I'm at risk for clots whether I had a port or not. But so far it hasn't gotten me down, esp. now that my stomach isn't killing me anymore. It's funny how my attitude is very much connected to my stomach. I'm such a fat bitch!
And the hits just keep on coming, eh? It seems like it's a never ending story of new and bizarre discoveries about your body. But you sure do make Sloan sound like the bestest hospital to be at, like, EVAR! I'm so glad you have good people like that in your corner.ReplyDelete
Another great blog update, Jaime. Very funny too! You could write a book out of these entries alone.
i agree with david, you could totally write a book based on your blog. i think you could reach a number of people--fellow patients and non-patients alike, as you have with your blog.ReplyDelete
i am happy that the nurses (and docs too, but mostly nurses) are taking such good care of you. they are truly amazing.