Imagine this: it is August 2008, one week after the delivery of my twins. I’m at home with Baby A. Baby B is in the NICU. My c-section recovery is not going well. I can barely even hold Baby A, never mind make it back to the NICU to visit baby B. My hormones are all over the map. My husband has just returned to work. Closest family is not close enough.
Thankfully I hired a baby nurse for two weeks. Actually, she refers to herself as a maternity nurse as she takes care of me and my babies. And she makes food for me even when I don’t think I am hungry. She makes me nap. She washes all the bottles. She does the laundry (by hand!). She answers the phone that rings incessantly. She keeps visitors at bay. She makes me laugh by telling me funny stories about herself. She is the one holding things together. She is my life raft. Keeping me afloat. But the clock is ticking. Only one week left. I can feel panic setting in. How can I do this on my own? I can barely even walk. And honestly, I have yet to change a diaper.
Then, I get a call from my OB/Gyn. At first I am surprised. I know he is on vacation. But he asks about the babies. I think to myself that it is nice of him to call and check in on us. I know we have a pleasant relationship, but this is unexpected. And then…the five words you never want to hear from your doctor: “Well, the reason I’m calling…”
He says that the pathology report from my c-section is back. And it shows that a pea-sized fibroid that he removed from my uterus is abnormal. Abnormal as in malignant, actually. He calmly explains that it contains mucin, from the GI tract, and that it is very unusual for something from the GI tract to be on the uterus and that I should see a specialist as soon as possible. He gives me his cell phone number so that I can call him at any time with questions. (Did I mention that he is on vacation with his family?) This is not good.
I am no longer afloat. This is not fair. Why is this happening to me? Again.
I already battled ovarian cancer fifteen years ago. I was only twenty one, a senior in college. I went in for an annual GYN exam and the doctor found a tumor the size of a baseball on my right ovary. The diagnosis: ovarian dysgerminoma. This was a germ cell cancer, similar to what Lance Armstrong would be diagnosed with. Cure rate 99%. If you’re going to get ovarian cancer, apparently this is the one to get. Wow, what luck! And the five words I heard from the doctor throughout this: “You’re young, you’ll be fine.”
I had my right ovary removed as well as a bit of the left ovary as it looked a little funny. Then I had three months of chemo. The gut-wrenching-hair-falls-out kind. I spent more time in the hospital than I’d like to remember. And then, on my twenty second birthday, it was done.
As a result of the chemo, I went into premature menopause. Hot flashes and all. But eventually everything came back, as did my hair. Doctors told me that having children would be possible. But, they warned me not to wait until I was twenty seven or twenty eight as I might be “too old”.
Then I went on to follow up scans and ultrasounds and a few false alarms. But the same five words over and over again: “You’re young, you’ll be fine.” So eventually the diagnosis was just filed away as part of my medical history.
A year later my beloved grandmother had a recurrence of breast cancer about thirty years after her initial diagnosis. She did not hear “You’re young, you’ll be fine.” She fought the good fight, but she didn’t make it.
A year after that my own mother is diagnosed with multiple myeloma, an incurable cancer of the plasma cells. The five words she hears from the doctor: “This is treatable, not curable”. We are told that she may have three to four years. She had three and a half.
At this point, I am twenty seven. Children are not even on my mind. I am not even dating anyone seriously. I have had more than enough pain and suffering in my young life. Time for a change.
I decide to make the move from Boston to New York City. I also decide to make a career change. After years of working in advertising/marketing/sales I decide I want to do something more meaningful than selling crap that I don’t really care about. I eventually land at NY’s premier cancer hospital for both my follow up care and my employment.
I start off working in fundraising, and then make a move to the department of Integrative Medicine. In this department, cancer patients are offered services to help improve quality of life: massage, acupuncture, yoga, meditation, fitness. I run the business end of things. Oh how I wish this stuff was around when I was going through treatment. Or my grandmother. Or my mother.
The week I started in this new department also happened to be the week I had a first date with my future husband. I love my new job and I have a new man. Things are good. Really good.
A few years later I am engaged! The wedding planning begins. It is spring and we want a winter wedding. Not a lot of time.
And then a month later I am rushed to the hospital for an emergency appendectomy. Of course getting to that diagnosis was complicated given my medical history. But eventually my appendix is removed. Turns out it was perforated. A slow leak. Most people are in and out of the hospital in three days. But not me. I ended up with a severe infection that landed me in the hospital for a week. It took a month to recover. So much for getting a jump on those wedding plans.
Eventually everything falls into place for the wedding and we get married that winter. We are not spring chickens. I am thirty three and he is thirty five. We know we want kids, but we are not sure how easy it will be. I visit a fertility specialist to review my medical history.
It turns out that my remaining ovary is functioning, but my hormone levels are borderline. This means that I could get pregnant on my own, but since it hasn’t happened he recommended a hysterosaliginogram (HSG). The HSG test uses x-ray technology to create a picture of the fallopian tubes and the uterus. Basically, this test shows if your tubes are blocked. Colored dye is injected into the uterus. The dye travels up through the fallopian tubes and out into the abdominal cavity. There is a 1% chance of infection from this test.
As suspected, my tubes are blocked. Could be scar tissue from my previous surgery or it could be a result of the infection from my perforated appendix. So the five words we hear from this doctor about pregnancy: “It’s very unlikely without IVF”.
A few days after the HSG test I am not feeling well. Not terrible, but not right. Some abdominal pain. And a fever. I go in for evaluation and it turns out that I am the 1% of people who end up with an infection. I land in the hospital on IV antibiotics for almost a week. Something else to file away in my medical history.
A few months later I dive into IVF. This is a whole new world. I thought it would be fairly easy as I have friends and family who have gone through this. Ha, I was so wrong.
The madness begins. Insurance approvals. Classes on injecting medications. Almost daily blood work and ultrasounds.
Thankfully, the process became a distant memory on Christmas Eve 2007 when my husband and I heard these five words from the doctor: “Congratulations! You are having twins!”
With IVF I knew it was possible to have twins, but it is still quite a surprise to hear those words. And on top of that great news, I ended up with eleven frozen embryos for future use. Everyone was pleasantly surprised. With a medical history like mine, you just don’t know how things will turn out.
As far as pregnancies go, mine was fairly uneventful even though I was labeled with the high risk trifecta. A twin pregnancy alone is considered high risk. Add in my complicated medical history that included IVF, as well as being AMA (advanced maternal age as I would be 35 upon delivery). High risk = a lot more monitoring. More frequent OB appointments. Ultrasounds at every appointment. Non-stress tests one a week, and then eventually twice a week.
Things remained uneventful until 33 weeks when I was diagnosed with cholestasis which results when the flow of bile from the liver is impaired. This syndrome causes severe itching. Even medication didn’t help. Because of this diagnosis I was scheduled for a c-section at 37 weeks.
And then around 34 weeks things got more complicated when an ultrasound uncovered a greater than 20% growth differential between my babies. This led to more ultrasounds, more non-stress tests and the knowledge that these babies could be taken out any time. The five words from the doctor that I wasn’t quite prepared for: “Are your bags all packed?”
My c-section was bumped up to 36 weeks. The only good news was that my OB would be performing the surgery (if I could make it that long). Had I made it to my previously scheduled date at 37 weeks, my OB’s partner would have been covering for vacation and I hadn’t even met him.
36.3 weeks and we go to the hospital to meet our girls! The surgery went fine until my husband made the mistake of looking over the curtain and seeing a whole lot more than he bargained for.
Baby A weighed in at 6 lbs 9 ounces. Baby B weighed in at 4 lbs 10 ounces and was taken directly to the NICU. I sent my husband with the babies. There was no need for him to sneak another peek over the curtain.
I eventually get to my room and we were lucky to be in a quiet area far away from the nurses’ station. I see that my husband’s nervousness about having baby girls has completely vanished and he is already jumping right in to fatherhood. He goes from the nursery to see Baby A to the NICU to see Baby B. He waits excitedly for visitors to arrive so he can introduce his new baby girls.
I, on the other hand, feel like hell. I wonder why some people say that a c-section is the way to go. I disagree whole-heartedly. My blood pressure is really low. I feel dizzy. The nurse comes in and I explain how I am feeling. The next thing I know I awaken to a roomful or nurses and doctors, and my husband with a terrified look on his face. I had a vasovagal episode. Essentially, I passed out.
Turns out that I probably had early stage preeclampsia before delivery. My protein levels had been elevated the day prior to the c-section. So I had high blood pressure that plummeted after the surgery. My iron was also low. This explained things. The five words I heard from the doctor: “You’re going to be fine.”
Eventually I got a little bit better and was discharged with Baby A. But Baby B would be in for at least a few more days. She was breathing fine, but she was regurgitating whatever she ate, so she had to be monitored. We were sad to leave her in the hospital, but we had no choice.
Fast forward a few days and we’re back to the beginning of this story and the five words no one wants to hear from a doctor, especially when you have two brand new little babies and it is supposed to be the happiest time in your life.
I had a mini nervous breakdown, but then I had to pull it together. I had to go visit Baby B. How could I leave her alone in the NICU? And now that I have no idea what the future holds for me I have to be with my babies as much as possible. And I am faced with a problem: the babies are in separate locations and I am still in so much pain that it is hard to make the ten minute car ride across town to the NICU. But I do it. I have to.
Two days later I have an appointment with the specialist my OB/Gyn referred me to. He’s a surgeon. A colorectal surgeon. He reviews the pathology from my c-section and the five words he tells me: “Probably advanced stage colon cancer.” He also adds in that it is likely that it has spread to the liver and lungs. He wants a colonoscopy scheduled as soon as possible.
My husband and I leave that appointment in a blur. We walk over to the NICU to see Baby B. And I know that the specialist is wrong in his diagnosis. I ask myself why I even bothered to go and see this doctor when I work at the best cancer hospital in the country. I reach out to my colleagues and friends. One happens to be a pathologist. She tells me to get the pathology slides and reports from my previous surgeries sent as soon as possible.
Two days later I am at my place of work, but as a patient, and I am hoping I don’t run into anyone I know. I meet with the oncologist’s fellow. He tells me not to panic, that many things happen to the body during pregnancy. For a moment there is a flicker of hope that this could all be a misunderstanding.
Then he starts reviewing my medical history. We hand over the pathology reports from my previous surgeries. Within minutes he looks up and questions whether anyone ever followed up with me after my appendectomy. My heart sinks. No misunderstanding. He then tells me that the pathology report from my appendectomy indicates that there was a malignancy. Yep. He is talking about the appendix that was removed almost two and a half years prior.
Mystery solved. Somewhat at least. The next week I am scheduled for a colonoscopy. It is clean. A few days after that, a CT scan. It is unclear whether what is showing up is pregnancy related or something else. A few days later, a PET scan. No major organs are “lighting” up. That is good news. The bad news is that I am now radioactive for twenty four hours so I can’t even be in the same room with my three week old babies.
The doctors then tell me that they want to schedule me for a debulking procedure. They will make an 8” vertical cut into my abdomen to look around and remove anything that looks suspicious. And while they are in there they will remove my right colon. No biggie, I will still have my left colon and my middle colon. They will reattach the “plumbing”. And if all goes well they will insert an intra-peritoneal port in my left chest wall so that I can have chemotherapy delivered directly into my abdomen.
And here’s the catch. The surgery is scheduled two and half months out. This is both good news and bad news. The good news is they believe that the cancer is very slow growing. And considering I just had a c-section, I needed time to recover before jumping into an even bigger procedure. The bad news was that I had two and a half months to think about what they might find.
My mind starts spinning. What if they go in and find so much more than expected? What if I don’t make it? What will my husband do? My babies will never know me. How unfair for them. After all, I lost my mother when I was twenty seven and it was horrible.
I then start setting up “what if…” scenarios in my mind. My husband arrives home most nights to find me sitting in bed weeping, asking “why me? why us?”. He puts on a brave face for both of us.
When my babies were four weeks old it was time to say bye bye to the maternity nurse. We had already extended her an extra two weeks. She now has obligations and we really can’t afford to keep her. I am terrified. I’ve only met a few other twin moms, one of whom told me that it was absolutely impossible to care for twins without a full-time nanny. She had a live in nanny, even on the weekend.
This forced me to pull myself away from my pity party. After all I had two little babies to take care of. I am thankful that they keep me so busy that I don’t have enough time to think about all the “what if’s”. It takes a few days, but I get them into a routine. I know what to expect. I figure out that different cries really do mean different things. I can do this! And not only can I do this, but I love doing it!
Even with so much uncertainly ahead, things start looking up. Until about a week later when the global-financial services firm that my husband works for goes belly up. Yep. He was working for Lehman Brothers. He packed up his desk and walked out with boxes, just like you saw on the news. We had no idea if he’d have a job. At this point the phone that had been ringing incessantly for three weeks stops ringing. People are afraid to call us. How much worse could it get?
Thankfully my husband’s group was picked up by Barclays. So he was still gainfully employed. At least for the foreseeable future.
Jump ahead two months and I am finally feeling somewhat human again. But then it is time for my surgery. I will be inpatient for at least a week. And for six to eight weeks following the surgery I won’t be able to lift more than ten pounds. This is a problem as my babies already weigh more than ten pounds.
The surgery happens. It was a really hard day. But after about ten hours in the operating room I hear these five words about the cancer that they found: “thankfully it is slow growing”. The surgeon removed the right colon along with a portion of the small bowel. He removed what was growing on the liver, thankfully just on the surface. All in all, the surgery went well. Even though they found more than expected, what they found was small. They were able to insert the intra-peritoneal catheter for intra-abdominal chemo, which would start in just a few days. I would have chemo off and on for the next two months.
The diagnosis was stage IV appendiceal cancer. And when I asked about cure rates, I heard these five words: “It’s treatable, but not curable.” This becomes the broken record that plays over and over and over again in my head. “It’s treatable, but not curable. “It’s treatable, but not curable. “It’s treatable, but not curable.”
This type of cancer usually recurs. But they really just don’t know as it is extremely rare. When I asked the doctor about recurrence she told me it could come back in two years, or maybe in ten. But hopefully never.
I finished up the chemo on Christmas Eve 2008, which was quite a contrast to the prior year when I was celebrating my twin pregnancy. At least I was able to spend Christmas at home with my family. Not really the first Christmas I envisioned with my babies, but I’ll take what I can get.
The side effects of this kind of chemo were not pleasant. Because it was not systemic, it instead went directly to the abdomen so there was be no hair loss. But there was nausea. And fatigue. And pain. Side-splitting pain that made it impossible for me to stand upright for the few days after the chemo. But I did not let that stop me from picking up my babies.
Two weeks later the part-time nanny we hired to help get us through my medical crisis had to start her new full-time job. Thankfully my mother in law is still available to help a few days a week. But eventually I was back on my own with my babies. We got back into the swing of things and I felt normal.
So then I live my life in three to six month increments. Depends on how often I have to go for follow up scans. The last few were only three months apart as they saw a small spot that seemed to have changed. But thankfully there was no change on the last scan. So I wait…for the other shoe to drop.
And it drops.
I go in for a follow up scan and am particularly anxious, although I feel fine physically. My husband comes with me and we wait. And wait. And wait. As usual. Then the oncologist’s fellow comes in and says the five words we didn’t want to hear: “Your scan was not clear”. Although this is the news we have been dreading, we have kind of been waiting for it. So it shouldn’t have come as a surprise. But in reality, it was still a shock.
And then I’m given a variety of medical options. It seems the consensus of my medical team is to perform another debulking procedure followed up by the dreadful i/p chemo. And the team gives me five words that I really don’t want to hear: “It’s really up to you.” Since this is such a rare type of cancer there just isn’t enough evidence to determine what the best course of action is. Which is not at all comforting.
So I decide to get a second opinion at another hospital specializing in a procedure called HIPEC. HIPEC is basically a warm chemotherapy bath that is done during the debulking procedure. Some evidence shows that heating chemo makes it more effective. And, doing this “wash” during surgery means the chemo is delivered directly where it needs to go and gets into every nook and cranny. The medical team here is much more optimistic. When talking with the team about the procedure I hear these five words: “We expect really good results”. Sign me up!
So now I am faced with getting on a plane and leaving my babies girls for up to two weeks. It is a hard pill to swallow, but I know deep down inside that this is the right thing to do. So here we are. Now let’s look to the future.
In a few months my girls will be three years old. I can’t believe it! They get cuter and more fun every day. And there is no place I’d rather be than at home with them. I know I am fortunate as they have particularly good dispositions.
I am really lucky to have so many amazing people in my life. A loving husband, a supportive family and, as one friend always says, a family of friends…old friends, new friends, twin friends, work friends and even cancer friends.
Having this kind of diagnosis certainly changes your perspective. I remember when Baby A was a few months old. It was bedtime. I had just put Baby B into her crib and then I put Baby A up on my shoulder. A little too far up – so she vomited up the entire bottle that she just finished. Amazingly she wasn’t covered in puke. But I was! I remember standing there laughing as I tried to figure out how to handle this!
As I held Baby A, I removed all my clothes and used them as a walkway to the changing table so I could clean up Baby A’s face. Baby B was fast asleep so the lights were out so I did my best to be as quiet as possible. I got Baby A into bed and then got down on my hands and knees (in the dark!) to clean up the vomit. This type of night might push some people over the edge. Not me. Just part of motherhood. And I am happy for every minute. The good, the bad, the ugly, and the puke. Blowout diapers: no problem. Full-on tantrums: whatever. Food thrown all over the floor: bring it on. Puke in the car: oh well. I am grateful for every moment. For every challenging or disgusting moment with these two, there are hundreds of other precious and joyful moments to make up for it.
There is nothing better than waking up in the morning hearing two little people calling out “Mommy, I need you” over the monitor. And to be greeted with such big smiles every day. It warms my heart. I love going in to look at them while they are sleeping. And I even love watching them on the video monitor. I am filing all of these memories away.
With all of this medical drama going on, I can honestly say that my life feels complete in some ways. I’ve been blessed with a wonderful marriage to a caring and loving husband and together we were blessed with two little angels. Two little angels who literally saved my life. If my medical history hadn't led me to IVF and a complicated twin pregnancy that required a c section, then the underlying cancer may have gone undetected until it was too late to do anything about it.
And now all I can do is hope. And live in the moment. And be grateful for each memory I’m creating with my little family.
