So yesterday was round 4 of the clinical trial. I get there early, have a nice breakfast at Pret A Manger, and get to Sloan at 11 am. I have my echo cardiogram (for the trial stats) and get weighed for the pharmacy to mix my treatment, I lost 1 pound, so I'm down 39 total now. I have been stuck here for like 2 months, but whatever it's a marathon not a race, right? That's fat girl code for "I LIKE DONUTS ALL RIGHT!"
So we get to the chemo suite around 3 but they aren't quite ready for me which is cool, I pop in Waiting for Guffman and relax. The nurse comes in and I lay down so she can access my port (my port is tricky so I have to do little tricks to get blood return). Well she pops the needle in and I barely feel it. And if that wasn't enough, she gets immediate blood return, I was like you are amazing! Then she hooks up the saline and things go crazy from there...
She did hook up the treatment, but before she started it I started coughing. A cough similar to the cough I had before I was diagnosed. It was confusing, I haven't had that cough in 15 months+. Plus I kept feeling like it was on my right side for some reason. Now as usual, at first I didn't think anything of it. But John noticed the cough right away and looked at me. He could see I wasn't feeling right.
Then I start coughing uncontrollably, and the oncology nurse comes in. I try to tell her the sequence of events and the chemo nurse thought I was blaming her, when I was just pointing out it coincided with me getting the saline. The doc then comes in and recommends albuterol in a nebulizer and after a few min, I still didn't feel well. Now the chemo nurse is annoyed I'm making her late for lunch, sheesh woman, why are you not on the Sloan program, bitchiness is not allowed!
So the doc who runs the trial wants me to wait but I still feel awful and my blood oxygen level is 91% which is cruddy. And then my husband says, maybe your blood clot broke off into your lungs? Let me tell you something, there is nothing more comforting that hearing, "Maybe it's just a pulmonary embolism?" So the doc says it's probably a mucus plug and I'm looking at him like "What's wrong with you, didn't you hear my husband, I'm about to die!"
Now I am convinced I will die and breathing gets harder. So instead of keeping my cool, I just get worse and the doc says we have no choice but to send you to urgent care by ambulance. The two paramedics who take care of me are awesome. Steve and Mark. They assess me but are calm, which made me say, ok so I'm not dying right this second. Then Mark takes my BP and says well I'm about 97% positive that you are alive, and I laugh and happy to discover that I can muster up enough breath to laugh.
Steve doesn't like my measly 91% and they have me hop onto the gurney. We get into the ambulance and Steve drives, no sirens just lights. No racing thru the streets, now I'm saying to myself, I'm a loser, I can't believe I'm here. But Mark is joshing us cause we're from Staten Island, which is enjoyable. Then John mentions how much fluid I drained the day before from my Pleural Cath (I know, I know I never wrote that blog). So John says "You drained 400ml right?" and Mark goes "400!!" And I said "well they took out 2 L when I got the tube placed." And Mark says "Look lady I'm not criticizing you, I'm just sayin wow!" and I laughed like crazy.
So we get to Sloan urgent care which is 15 blocks north of the 53 street center where my doc and chemo are. Steve pulls me out of the ambulance and says, how are you feeling, and I say "actually better." "Don't just say that on my account," he says. We enter urgent care and it is PACKED! Of course it is, it's Monday. I wait for around 5 hours, but in SI that's normal for any doc apt. let alone the ER.
So I'm waiting and waiting, can't watch the Olympics cause I have the ONE television with no NBC! (When you're in a hospital where everyone is on the same cancer playing field, you can bitch about stuff like that!) By the time the doc gets to me I feel 100%, which only embarrasses me more. The doc is great, I've seen him before, he's the guy who told me I had a "touch" of pneumonia, but I didn't remember his name. He says it's either a clot or possibly a mucus plug. So now that I'm calm we finally ask what that is. And he tells us that our lungs always have mucus, it helps us keep dirt out of our airways. But when you have lung cancer mucus can sometimes gunk up and block an airway and your body feels the need to cough it out. As soon as he says that I'm like D'OH!
But he also wants me to understand the scope of what having a clot in the lungs mean and he's not ready to call it a mucus plug until he knows for sure, "Ok?" "Yup, I get it!" "Good and now is probably not a good time to tell you this but my name is Klotz," and he flashes his name tag with a smidgeon of shame.
So I get a Pulmonary embolism Cat Scan. I don't know if you remember but this is the cat scan I got the day I was diagnosed. It requires a larger needle in the forearm and results in the same big black and blue I got Day 1. It also requires an IV contrast that makes you feel like you just pee'd yourself. But as long as it confirms the mucus plug theory, I don't care if I really pee myself. Which it happily does (but my pants stay dry, whew!). And we get home just before midnight.
Funny thing is I have to go back the next day to see Dr. Chan (who is in the 68th St building) for a follow up apt that I missed last month because I had become quite fond of vomiting in the car. So this morning I wake up and get back on the Sloan horse as it were and am wondering if I will be allowed to get chemo today at 53rd. So we're at breakfast waiting for my apt. with Chan and Krug's nurse Allison (not the one I have the girl crush on, she's in the chemo ward now) calls John's phone. So Allison says no chemo today, 3 tumors look a tad bigger. Suddenly we're all a little bummed.
So we see Dr. Chan, who could cheer up a concentration camp. He comes in and says "Hey! How's it going? So your last brain scan (from May) looked great, not only is everything stable but the little ones have completely disappeared." He's like BOOYA! I love him! So we schedule my next MRI and follow up (Nov.) and back to worrying about the 3 tumors. But I think to myself, radiation is an option and I'd be in Chan's hands and I feel like ok I can handle whatever this means.
We get home at 1:30 and Allison calls back. Krug looked at the scan from Urgent care. Everything is stable except for those three tumors but the growth is nothing to panic about. However he thinks it's a good sign that the clinical drug isn't working so let's not waste any more time on it. Therefore on Monday I will start a traditional chemo, similar to what I did last year. John kisses my head and then calls the troops to tell them the news.
While I'm listening to him call the parental units, I think Hmmm, funny how my lung decided to gunk up at the precise moment I was about to receive a therapy, that unbeknownst to anyone, wasn't working. And then I thought, you know what I'm down, I get it. Stop worrying and just believe. Again don't know what the future holds and I know death is the likely outcome. But damn if that's not something to hang on to!
you are pretty friggin awesome.ReplyDelete
You continue to amaze me, we all love you so very much, keep believing and we will all keep prayer! :)ReplyDelete
This comment has been removed by the author.ReplyDelete
always thinking and wishing and hoping and praying for you.ReplyDelete
I love you, girl. I'm heading to York Ave in about ten minutes for a 2PM meeting. Are you able to use the Brooklyn chemo center???? Definitely worth asking.ReplyDelete
I'm promising you won't be sorry if they are able to do the infusions there.....
I hope you can..... please DO ask and definitely, let me know..... I HATE that you are in this shitty situation... hate it hate it hate it....
love love love love,
Thanks everyone! I'll def ask AnneMarie! Love you guys!ReplyDelete
Crazy week around here.. how are you???Delete
I love the way that you write about your experiences. You have so much to tell the world.ReplyDelete
I wondered if you would be interested in writing about your lung cancer and the clinical trail on my site designed to help people living with, and survivors of, cancer? (Or anything else that takes your fancy!)