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Taking Control of My Future

Ten years ago last month, I had just returned from a two week holiday in Italy and Switzerland with my then-boyfriend.  I remember the timing so clearly because of what happened during the trip and upon my return.  The scenery and sights were amazing, of course, not to mention the food, but none of that is the first thing that brings that particular time to mind.

In the latter half of 2004, my treatment with the chemotherapy drug 6MP was well underway, and I had made it through the initial side effects, which for me included severe pneumonia, bone marrow suppression and a case of hemolytic anemia.  Several months after I had recovered from that train wreck, true to form, I began planning a trip for myself to celebrate my perceived victory.  Working in the hospitality industry afforded me some pretty great connections, and I enlisted the help of my boss at the time to plan a trip to Europe.  After some discussion about the time frame and what locations might be best, I decided on a few nights in Switzerland and then a train ride to Venice to finish out the remaining portion of my trip, which would be in mid November.  My boss was kind enough to reach out to some of his contacts there and set me up with some amazing places to stay and eat.

During the time I was planning the trip, I had also just started dating someone; while we had only been together for a month or two, things seemed promising, and I figured that there was nothing like a couple of weeks in each other’s company in a foreign country to figure out if we might have long-term possibilities.  I decided to invite him along and he agreed ecstatically, so I commenced with booking airfare and arranging the details.  Trip planning has been and remains one of my absolutely favorite things to do, be it for me or someone else.

As the trip grew closer, so did our relationship, and given that the last few months of 6MP treatment had rendered me feeling semi-human again, I was actually able to be physically intimate, which was something that had basically been a non-existent part of my life for the two years since I had been diagnosed.  I truly believed that the worst days of the disease were behind me, though I still felt far from “normal”.  Given the fact that my GI doctor at the time had mentioned to me when I started the 6MP that I wouldn’t want to start a family while taking the drug (which was the furthest thing from my mind at 22 years old and sick beyond belief), I went to a gynecologist and got put on birth control pills, using this as an extra measure of protection in addition to physical barriers.  I never thought about it much beyond that, as none of the doctors went into any real level of detail about the potential side effects of the drug.  Now at 34, I look back and realize how naïve I was to doctors and advocating for my own health, but hindsight works that way, I suppose.

I had carefully researched hospitals and doctors before leaving for Europe, mainly to give my mother peace of mind as I traveled on my own for the first time since my diagnosis.  As young as I was, I’m sure there was some sense of being invincible at the time, as this was a couple of years before the disease would really unleash its wrath and almost claim my life in the process.  My medications were packed, I knew what I could and couldn’t eat – I was ready.

Switzerland was incredible, and the hotel we stayed in while there was probably the most gilded and impressive property I have had the pleasure of staying at to this day.  The room overlooked Lake Lugano, and the bed felt like I was sleeping on a pile of clouds.  I felt great those first few days, and it was only as we packed our bags to head to Venice several days later that I noticed some nausea, which wasn’t uncommon during the course of my 6MP treatment.  A five hour train ride through the Italian countryside dropped us in the fantasy world of Venice, and I spent that week on an all-carb-or-bust diet.  The nausea was always there in the background, not too terrible, but enough that I was planning on getting my TPMT levels checked when I returned to the States to make sure that I wasn’t building up a toxic level of the drug in my bloodstream again.  I ate with a vengeance that week too, everything looked so good and I was just so hungry.  I figured it was the sight of all that amazing food.

We returned from the trip and, still concerned by the nausea, I went to the doctor’s office to have a routine blood draw done to make sure everything looked okay.  The next day, I got a call from the doctor with a concerned tone in his voice.  My blood levels were fine, he mentioned, but…But…I hate that word.  Worst segue ever.   But I was pregnant.

My blood ran cold as he said those words, and I frantically searched my mind trying to remember if I had forgotten a pill, or didn’t use extra protection at any point in the last two months.  I couldn’t think of anything.  The doctor recommended that I make an appointment with a gynecologist as soon as possible, as he indicated that pregnancies while on high doses of 6MP were “highly problematic”.  I sat in my bedroom and cried, having no idea what to do.  Several hours later, I called my mother and told her, and let her know I was setting up a doctor’s appointment within the week to figure out what to do.  She was shocked, but supportive, and I then took a deep breath and got into the car to make the hour’s drive to my then-boyfriend’s house to tell him in person.

He was clearly surprised when I told him, but stayed calm and just sat with me as I let myself process the information.  His first question was one of my health, and how a pregnancy would impact my disease.  I had no idea, and it was only then that I explained the full impact of a class D medication during pregnancy to him.  We talked about various options, still absorbing the news, and knew that nothing more could be decided until we had talked to doctors to find out what we were really dealing with.

Later that week, I met with my gynecologist who confirmed the pregnancy, telling me I was about 6 weeks along, and then brought me into her office to talk.  Once she sat down behind her desk and removed her glasses, I knew what she was about to tell me wasn’t good.  I had no idea what I wanted, except for everything to go back to the way it was a couple of months ago.  As she started talking about the implications of the dose of 6MP I was taking on a developing fetus, it became clear that she was recommending a termination of the pregnancy as quickly as possible.  I asked if I could have some time to think about things and consult a second opinion and she agreed, but urged me to move quickly, noting that the pregnancy could also send my body spiraling into a flare the likes of which I had not yet seen.

I filled in my boyfriend about the appointment and we decided to consult with my GI doctor to get her feedback.  Her bedside manner had never been her strong suit, but I will say that day she demonstrated actual empathy, though her words were just as ominous as the last doctor.  She told me that given how quickly my disease had progressed in the short time since diagnosis that a pregnancy would almost certainly worsen my condition, and told me that the chance of major birth defects to the baby were enormously high.  Hearing enough at that point, my boyfriend and I looked at each other and knew what we needed to do.  I can’t say I was upset or angry or sad…I couldn’t really feel anything, to be honest.  I was just still so dumbfounded that things had changed so drastically in the course of a week and I felt like I couldn’t process all of the information that was being doled out to me in volumes.

I called my mother to let her know what we had decided at the recommendation of the doctors, and called the gynecologist to let her know we had decided to terminate the pregnancy.  I think she knew how traumatic all this was, as she cleared time the following morning for the procedure so I wouldn’t have to agonize over the decision all weekend.  The next morning, my boyfriend and I showed up at her office and within an hour, it was done.  Everything had happened so fast, yet based on everything the doctors had told us, I felt that we made the right decision.

As the weeks went on, I started thinking more and more about the entire situation, and I was angry that more time wasn’t spent when I first started the 6MP on telling me about the side effects, particularly the dangers of birth defects.  Literally, the only thing the doctor had told me at the time was “you don’t want to start a family” while taking the drug, something that didn’t even begin to cover the risks and contraindications of the medication.  I started doing more research on 6MP, and read about possible birth defects occurring even years after being taken off of the drug.  Other immunosuppressants had pretty much the same stories, not to mention that there was some information questioning whether these drugs lowered the effectiveness of oral contraception, something that was never mentioned to me at all.  Knowing that my treatment was going to be for life and not a finite period of time, I knew I couldn’t put myself through the agony of having to make a decision such as this one again, and given the circumstances of the last pregnancy, how could I be sure it wouldn’t happen again?  If we were talking about a year or two, of course I could abstain from sex, but for the rest of my life?

I began researching more permanent methods of birth control, but I questioned the effectiveness of hormonal methods such as Norplant implants and shots, given my experience with the pill, and according to my gynecologist, I was not a candidate for an IUD given the risk of infection to an immunosuppressed individual.  I felt stuck.  At 24 years old, I didn’t know if I would want to have children down the road, but it was seeming less and less likely that that was going to be a viable option given all the medications I was on.  I decided it was time to take the bull by the horns and research permanent sterilization.  If I wanted a family down the road, there was always adoption, and I couldn’t simply do nothing.

Upon asking my gynecologist about the permanent sterilization, she was surprised, but offered me some information about two options.  There was, of course, the traditional tubal ligation, a process in which the fallopian tubes were cut and tied, but this involved an actual surgery and incisions, something that many doctors didn’t want to do unless absolutely necessary on my immunocompromised body.  She mentioned a newer option called Essure, which was popular in Europe; essentially, during a quick procedure, a small titanium coil was placed inside of each fallopian tube to encourage scar tissue grown around it.  After three months (during which time traditional birth control methods are needed), a study is done using dye to make sure that the tubes are completely sealed, and at that point, you are permanently sterilized.  This option intrigued me, and I read up some more on it.

Several weeks later, after giving the idea considerable thought, I decided that I wanted to move forward with the Essure procedure.  Given that it is irreversible and I was so young, my doctor requested another appointment with me to once again asses my “readiness” for the process.  During that appointment I told her the circumstances under which my last pregnancy had occurred, how I didn’t want to have to be put in that awful position again of having to make a decision that was a no-win either way, and that I needed to do something to ensure that I would be in control of my fertility (or lack thereof) moving forward.  She handed me a stack of papers to read and sign, essentially making it clear to me one more time that once done, there was no going back on this.  I felt good about the decision.  I was ready.

I scheduled the procedure for the following week, and had the office call my insurance company to arrange all of the authorizations.  Because it was elective sterilization, 100% of the costs were covered, which was great.  I called my mother and informed her of my decision, which she quietly agreed was probably for the best.  My boyfriend had been kept in the loop of the process all along, and while we hadn’t discussed a permanent future together, he seemed supportive of my decision as well.

I went in the following week, and under a mild sedative, the entire process of inserting the coils took about half an hour.  Once I woke, I had a bit of cramping, but nothing horrible.  The “recovery”, if you could even call it that, was very minor, and I was back to my normal self in a couple of days.  Overly cautious, I refused to have sex for the next three months until the dye study was completed and showed that I was permanently sterilized, and my boyfriend was forced to accept this decision, although rather unenthusiastically.

About a week afterward, I drove down to visit my mother, and we sat and talked about the last few months.  I cried, she cried, and she went into her closet and retrieved a baby book that was written in Spanish, something that she had picked up the year before to stow away for the day when I might provide her with a grandchild.  We looked at it together and I hugged her, for the first time realizing that it wasn’t only my future that had been permanently altered.  I looked at the book, and while sad, I realized that it had never been meant for me.

Three months later, I went in to the gynecologist’s office for the follow up, and as I watched on a screen as the dye was inserted, it stopped abruptly where the coils had created a blockage of scar tissue around them, and I immediately felt some small sense of control over this part of my destiny.  Maybe I couldn’t control the course of the disease (that would become blindingly obvious in the next couple of years), or the side effects of the medications, but I could control this part; never again would I be forced to decide whether or not I would have to end a life before it had barely begun.

Ten years have passed since that awful time, and while it was terrible to have to contemplate that kind of decision at such a young age, I knew then that it was for the best and I have no regrets.  Are there times that I wonder what it would be like to have a child of my own?  Of course, and I know my husband would be an amazing father.  But that wasn’t something meant for me, at least not in this life. Quite honestly, between managing symptoms, doctor appointments, hospitalizations and such, I see now that for us to have a child wouldn’t be fair to anyone.  I see my friends begin to start their families and I am truly happy for them, and I enjoy the time I get to spend with my niece Izzy.  I know my brothers and my sister will eventually go on to have children and I’ll get to be the cool Aunt that will take them for temporary tattoos and feed them extra sweets.  And when I get home at the end of each day, all the love I need is there in the form of my wonderful husband and the two best Labradors a girl could ask for.  Plans change, and at the end of the day, growth is painful.  Change is painful.  But nothing is as painful as staying stuck somewhere you don’t belong.

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