Others' are tougher stuff. Jim's face the day he walked in the door after driving back all the way from an important work event in Dover because the Doctor gave him the test results on the phone. And I had called him and made him tell me before he got home. His face that day of chemo, which I blogged about.
Various deaths in the family. His face the day I met him at the veterinarian when our 8 week old puppy broke his leg. I know I will never forget his first fatal pediatric code. Pain on one's face is the most descriptive, yet unique expression. I suppose I measure a lot by the emotions on my husband's and son's faces. After all, I spend about 16 hours a day looking at them. Others' faces, too. My father and mother, my brother. Even my co workers, whom I spend a lot of time with as well. I want you to do a little experiment tonight. Look at your family and ponder on what I have written here. Come back and tell me what you saw on your families' faces, at softball, at dinner, at little league. I want your stories.
So, we started off with the day Jim came home and told me I for sure was going to need chemotherapy. THat it was a molar pregnancy, not just extra tissue. I couldn't help thinking, wasn't possible retained placenta ENOUGH?! Wasn't one surgery just enough to ruin everything? At that point, we were going off of beta hcg measured by my doctor, Dr. Berlin, of Bayside. All of this happened very, very quickly. I started blogging somewhat in reverse, or real time, and I want to share the whole story with you guys.
On Friday, May 17, I went for my checkup. I was stressing because Jim was working day shift, it was boiling hot outside and I had to take the baby with me. In those days, he was nursing every hour to hour and a half. So I made it to the appointment, but he was screaming his head off the entire ride. I want to say this is the day I discovered that blaring the radio will make your child go the eff to sleep. Try it. It works. So I get to the appointment, miraculously on time, and the midwife is pushing on my abdomen and says, "why is your uterus over here?" And she's pushing where my liver is. Its so funny, because a few days prior I had posted on Facebook that I was 100% sure I was dying of liver cancer, because I had a stomachache and I asked Jim, the PARAMEDIC, what was inside in that spot and he said liver. My friend Jess agreed with my diagnosis, and my mom too. Fellow hypochondriacs, ya know. Here's my friend Jess and Keven, Jack's godparents. They are AMAZEBALLS.
My midwife was not happy, and she tried to do a pap smear but there was just too much blood. I hadn't stopped bleeding postpartum at all, and had been passing clots. Three weeks prior, I had called Bayside and spoken with a nurse about the clots, bleeding and cramping. She told me it was normal and I was probably having my first period, even though I was exclusively breast feeding. For those of you who don't know, breastfeeding is mother nature's way of helping you not do something really really dumb and get knocked up again, stat. Because I can only imagine being pregnant with a newborn. Based on my hcg levels, I was like 20 pregnant women inside one, so, I think I know. Bad news bears. Anyways. I had other symptoms too, mostly pain. It was hard to sit up in bed. Turns out, that was from my ovaries being so swollen and cyst-i-fyed. I know thats not a word. I made it up. I can make up words, I have cancer.
They rushed me to Bebee for an emergency ultrasound to rule out hemorrhage. I remember it was just me and then my in laws came and I felt so much better. I thought it was going to be retained placenta and that was the worst thing ever to happen to me. The tech asked me if I had ever had ovarian cysts before, and thats when I knew something was up. When I left, Mike and Sandy were there so they helped me take care of Jack. I refused to leave until the Doctor called me with my results, so it took a few hours. Jim even came to visit for a few. The Doc finally calls and says, we think maybe you have a little retained placenta. Its no big deal, so we will see you in the office Monday. And I'm like WHAAAAAAAAAAAAT?
He tells me maybe they will give me "a little medication" to expel the tissues and if that doesn't work, a D&C. Like, ok, NBD. We are just going to either make you feel like you're in labor for 3 days or perform surgery under general anesthesia. Well, what else could I do? I went home. Googled a little. Ha ha. A little. Mostly, I decided I wanted a D&C and none of the medication, which may fail, leaving me with a D&C anyways.
So when I went in to see the Dr. (Berlin,) I wanted to tell him that, then get the surgery scheduled for ASAP. I kept thinking of this icky rotting flesh (sorry, guys) that looked like Jack's umbilical cord was inside me and I was not ok with this. Just needed it out. I'm sure you can understand. This is Monday. So they do another pelvic and abdominal ultrasound. And this time the tech works for my doc so she takes some liberties and tells me my ovaries are like 5x the size they should be and covered-- JUST COVERED in cysts. Hmmmm, ok. Well.. She says she sees tissues in the uterus too and I see it on the screen clear as day, it looks like a bunch of grapes, just like from my Google filled weekend.
Still, for some reason, I'm ok. I'm thinking, I will take some hormones and my ovaries will shrink.
Then Dr. Berlin comes in and he's talking about a molar pregnancy and even then I'm thinking ok, a couple rounds of in office injections of methotrexate and ill be fine. The side effects are minimal! They said they wanted to do a quantitative beta hcg and see my levels. I could call the office at 10 am and they would tell me. So I did the first of what would be many, many blood draws over the next year.... And when I called in the morning, no results. Now all of a sudden this drs office that couldn't get me off the phone fast enough when I was pregnant and had concerns, is being so nice. I knew something was really up. 10 rolls around, 11, 12, no results. I call Jim and express my frustration and HE says he will call and a half hour goes by. I call him and he's in the car so I know it's bad. He tells me the dr told him it can't be anything but a molar pregnancy, my hcg is 277,000 and that's the highest the test goes to order it. He comes home and we all cry a little
So, we started off with the day Jim came home and told me I for sure was going to need chemotherapy. THat it was a molar pregnancy, not just extra tissue. I couldn't help thinking, wasn't possible retained placenta ENOUGH?! Wasn't one surgery just enough to ruin everything? At that point, we were going off of beta hcg measured by my doctor, Dr. Berlin, of Bayside. All of this happened very, very quickly. I started blogging somewhat in reverse, or real time, and I want to share the whole story with you guys.
On Friday, May 17, I went for my checkup. I was stressing because Jim was working day shift, it was boiling hot outside and I had to take the baby with me. In those days, he was nursing every hour to hour and a half. So I made it to the appointment, but he was screaming his head off the entire ride. I want to say this is the day I discovered that blaring the radio will make your child go the eff to sleep. Try it. It works. So I get to the appointment, miraculously on time, and the midwife is pushing on my abdomen and says, "why is your uterus over here?" And she's pushing where my liver is. Its so funny, because a few days prior I had posted on Facebook that I was 100% sure I was dying of liver cancer, because I had a stomachache and I asked Jim, the PARAMEDIC, what was inside in that spot and he said liver. My friend Jess agreed with my diagnosis, and my mom too. Fellow hypochondriacs, ya know. Here's my friend Jess and Keven, Jack's godparents. They are AMAZEBALLS.
 |
| This is on their wedding day in Vegas. I'm 24 weeks pregnant. |
They rushed me to Bebee for an emergency ultrasound to rule out hemorrhage. I remember it was just me and then my in laws came and I felt so much better. I thought it was going to be retained placenta and that was the worst thing ever to happen to me. The tech asked me if I had ever had ovarian cysts before, and thats when I knew something was up. When I left, Mike and Sandy were there so they helped me take care of Jack. I refused to leave until the Doctor called me with my results, so it took a few hours. Jim even came to visit for a few. The Doc finally calls and says, we think maybe you have a little retained placenta. Its no big deal, so we will see you in the office Monday. And I'm like WHAAAAAAAAAAAAT?
He tells me maybe they will give me "a little medication" to expel the tissues and if that doesn't work, a D&C. Like, ok, NBD. We are just going to either make you feel like you're in labor for 3 days or perform surgery under general anesthesia. Well, what else could I do? I went home. Googled a little. Ha ha. A little. Mostly, I decided I wanted a D&C and none of the medication, which may fail, leaving me with a D&C anyways.
So when I went in to see the Dr. (Berlin,) I wanted to tell him that, then get the surgery scheduled for ASAP. I kept thinking of this icky rotting flesh (sorry, guys) that looked like Jack's umbilical cord was inside me and I was not ok with this. Just needed it out. I'm sure you can understand. This is Monday. So they do another pelvic and abdominal ultrasound. And this time the tech works for my doc so she takes some liberties and tells me my ovaries are like 5x the size they should be and covered-- JUST COVERED in cysts. Hmmmm, ok. Well.. She says she sees tissues in the uterus too and I see it on the screen clear as day, it looks like a bunch of grapes, just like from my Google filled weekend.
Still, for some reason, I'm ok. I'm thinking, I will take some hormones and my ovaries will shrink.
Then Dr. Berlin comes in and he's talking about a molar pregnancy and even then I'm thinking ok, a couple rounds of in office injections of methotrexate and ill be fine. The side effects are minimal! They said they wanted to do a quantitative beta hcg and see my levels. I could call the office at 10 am and they would tell me. So I did the first of what would be many, many blood draws over the next year.... And when I called in the morning, no results. Now all of a sudden this drs office that couldn't get me off the phone fast enough when I was pregnant and had concerns, is being so nice. I knew something was really up. 10 rolls around, 11, 12, no results. I call Jim and express my frustration and HE says he will call and a half hour goes by. I call him and he's in the car so I know it's bad. He tells me the dr told him it can't be anything but a molar pregnancy, my hcg is 277,000 and that's the highest the test goes to order it. He comes home and we all cry a little
My OB/Gyn orders a pelvic MRI and chest X-ray to see if it had spread to my lungs. I get to the MRI and they tell me I can't breastfeed for 48 hours after. I really lose my shit. I start panicking and crying and this MRI tech takes me in the back and holds me until I stop. I keep saying "you don't understand, a week ago I was fine, now I have cancer."
And the lungs are clear, but I find out later it's spread to my chest anyways with a CT scan with contrast. I give up on breastfeeding after my first surgery.
It's Thursday now, and we are the only people in the waiting room. They take us back and I give an extensive family history. Every box that gets ticked off, the PAs eyebrows raise slightly higher. They take us to a much bigger exam room, where the stroller will fit. Jim gives Jack a bottle of my breast milk.
When the Doctor comes in, he's much shorter than I thought he would be. I can't imagine why I am thinking that when he is about to tell me this, but I am. He sits down in front of me and I'm looking down at the stirrups. He uses terms like "aggressive, metastatic, spread to the lungs, multi agent chemotherapy." He tells me that, yes, my hair will fall out. He does another ultrasound and a pelvic exam and schedules a d&c for the following day. He even suggests that we admit me to the hospital that day and start chemo. He wants a picc line and says my course will be less than three months, but the paperwork orders 16 cycles of chemo. It. Is. So. Surreal.
So, what else can I do?
He explains I will be using a regimen called EMA/CO. It stands for Etoposide, Methotrexate, Actinomycin D, Cyclophosphamide, Vincristine. It's a very aggressive treatment with a 90-95% cure rate. He keeps repeating aggressive, intensive, about the med regimen and my cancer. My cancer. He says the methotrexate is a 12 hour infusion, so I will come to him in the morning, get that and other drugs, then I can leave and come back for them to turn it off. His office is 2 hours From my home, so this is less than ideal. After a few days of working out the kinks, we decide I will use Cadungog's plan, and go to a physician down here where I live. Enter Dr. Sehbai to stage left.
It's Tuesday, May 28th at 7 am. Our third wedding anniversary. We should be giving each other gifts and celebrating with our baby but instead we are in a cold, brightly lit exam room. Jack is with his grandparents who, fortunately live near by. They have seriously been live savers. We go over the EMA/CO routine, one drug at a time. He draws a diagram, like a flow chart. I am amazed at how much he knows. He tells me methotrexate will take some time to get, that it is a childhood cancer drug, they don't stock it. I just keep thinking how awful it must be to have a baby with cancer. Dr. Sehbai looks at the floor when he tells me the side effects. He says its "very difficult for young women to lose their hair." I'm fantasizing about cute pixies on Pinterest.
We decide to start chemo on Thursday, and they schedule me for a port surgery Wednesday. Dr. Sehbai thinks a port makes more sense because I can get it wet. There's less chance of infection I hate the ocean and am petrified to swim in it, but I'm walking around, telling anyone that will listen that I can go swimming. So bizarre. Somewhere in all of this I develop a healthy appreciation for the ocean, and now I need to go there every day. I need to hear the waves crashing, even to have it touching my feet. If cancer made me appreciate life more, I think I'll take it.
They place the port on Wednesday and I leave with an ice bag, two hospital blankets (favorite!!) and a prescription for Percocet. They tell me it will hurt, "like a paper cut," but it feels like someone shoved an ice pick in my chest. I wrote a whole post on it, you can find here: (http://kittykal.blogspot.com/2013/06/im-bionic.html) That post has funny photos. After, we go to Chick fila, because I fasted all day, and its the grand opening, I think.
But then there's drama with the agency that is going to manage my 12 hour methotrexate. They are leasing us a pump and a home nurse agency is going to come flush out the port and heparinize it. For those of you non medical people, a saline and heparin flush prevents clots from forming in my port. It's good stuff. The port goes directly into my vena cava, very close to my heart. It prevents my veins from collapsing as they repeatedly siphon poison into my veins. The home health agency has their own pharmacy and can't get it until Monday. I say fine by me!
They place the port on Wednesday and I leave with an ice bag, two hospital blankets (favorite!!) and a prescription for Percocet. They tell me it will hurt, "like a paper cut," but it feels like someone shoved an ice pick in my chest. I wrote a whole post on it, you can find here: (http://kittykal.blogspot.com/2013/06/im-bionic.html) That post has funny photos. After, we go to Chick fila, because I fasted all day, and its the grand opening, I think.
But then there's drama with the agency that is going to manage my 12 hour methotrexate. They are leasing us a pump and a home nurse agency is going to come flush out the port and heparinize it. For those of you non medical people, a saline and heparin flush prevents clots from forming in my port. It's good stuff. The port goes directly into my vena cava, very close to my heart. It prevents my veins from collapsing as they repeatedly siphon poison into my veins. The home health agency has their own pharmacy and can't get it until Monday. I say fine by me!
Jaimie comes up to visit for the weekend. She's my big sister in sorority.
Rick and Kari came up too:
On Sunday night my mom arrives via train. I wasn't going to tell the truth about her in my blog, but she knew I had cancer and went on a ten day trip to paradise instead. When she got here, she ignored my baby and stole my Ativan. I could tell its really hard on her, because everything is about her of course. She comes for day 2 of my infusion and has to leave halfway through. She says she wants to go to Walmart, but doesn't buy anything. My mother never came to my wedding, and told me 2 days before. Jim can't stand her, but I keep giving her second chances. She even unfriended me on Facebook.
That is the conclusion of my "diagnosis" journey. Be sure to see the post on my port placement and first chemo. D&C post coming soon.
You can read about my first days of chemo here: http://kittykal.blogspot.com/2013/06/e-topiside-m-ethotrexate-ctinomyacin.html.
That is the conclusion of my "diagnosis" journey. Be sure to see the post on my port placement and first chemo. D&C post coming soon.
You can read about my first days of chemo here: http://kittykal.blogspot.com/2013/06/e-topiside-m-ethotrexate-ctinomyacin.html.
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