My brain tumor

I have a brain tumor. It is what kept me from getting pregnant those five years before Henry was born.

When Peter and I moved from Salt Lake to New Jersey in 2009 we sought out one of the best fertility clinics in the area. When I went to the new doctor for my initial consultation (which cost us $500), the doctor concluded that I was a good candidate for IVF. We scheduled initial blood work for the next morning, and, assuming everything checked out, I would start the IVF process. Peter and I went home from the appointment feeling hopeful about the clinic and the doctor’s fresh perspective and positive attitude about our particular situation.

As the evening went on, we decided it would be best to hold off on pursing IVF. It was mostly a financial decision. It could cost us about $15,000 when it was all said and done (prices vary based on how much medication you need, how many office appointments you need, etc and those things can’t be determined until mid-cycle). That is $15,000 for the POSSIBILITY of getting pregnant. (Most clinics also offer a “buy two get one free” option, so you have to gamble up front if you should pay $15k for one try or $30k for three tries.) Also, at that point I was working as a contractor for PwC, so leaving work all the time for doctor appointments meant leaving money on the table.

Despite all the positive statistics for young, healthy women in my situation, we were very aware of the negative statistics, mostly because that is all we had experienced for the past three years. We knew Peter would be going to graduate school in the next two or three years, and we wanted to have enough money saved to pay for it (or most of it, depending on how expensive of a school he would end up at), avoiding student loans. We decided it would be best to save our money for our future rather than gamble it away for the possibility of a baby. It sounds selfish to choose to hoard your money rather than put it towards building a family (is there a more worthy use of money?), but we were still young and had plenty of time to get back to IVF in the future.

I cancelled my blood work appointment for the next morning and we decided to give it some more thought. We didn’t really ever decide not to go forward, we just decided to take some more time. That turned into about two years.

As the weeks and months went by, I gained a little perspective on my situation. I owe that perspective change to moving away from Utah and all the changes that came with that, and a new friend, M.

All of the sudden having a baby didn’t seem like the next step in my life that I had to figure out right away. It seemed important, and I would have loved it, but it wasn’t my main focus anymore. Some of my reasons were:

  1. Doing fertility and working full time is a huge hassle. Appointments are unpredictable. Some weeks you have to go into the clinic every day or every other day. Yes, my office was always kind and accommodating, but it’s still unpleasant to always be running back and forth to the doctor when you have work to do, meetings to attend, etc.
  2. Side effects can be brutal, which is an unpleasant disruption to life.
  3. Putting money in the bank was a lot more fun then throwing it out the window for pills, shots, ultrasounds, etc.
  4. We were having so much fun in New Jersey! It was the first time in our marriage that we were both working full-time, so our schedules lined up perfectly. We spent every evening together, we ate meals together, we spent our weekends together, took tons of trips and really enjoyed life. I have nothing but love for New Jersey because of that awesome year.
  5. Once I had a break from fertility treatments and started feeling like myself again, going back to that awful place seemed daunting and basically unmanageable. When you’re doing fertility, you’re all in. You can’t do it casually.

After a few months we went and met with an adoption agency in NYC. At some point you have to decide if it’s best to keep throwing time and money at the possibility of a biological child, or spend that same time and money on adoption, keeping in mind that neither time nor money grow on trees. We didn’t get far in the adoption process before deciding it wasn’t time for that either.

After a year in New Jersey we moved to Portland, Oregon. I thought maybe I’d look up a doctor there and get going again, but never did. Life was good! Why disrupt that? Another year passed.

At this point friends and family were starting to get pretty uneasy about our childless state despite our efforts, right as we were getting really used to the idea. I was finally and truthfully able to enjoy the perks of not having kids, but that was hard for others to accept. People tried to convince us that any amount of blood, sweat, tears and money would be worth it when we were holding our future baby. This is true, but not helpful since throwing money at a fertility problem often isn’t a solution that will actually end with a baby. People tried to convince us it was a matter of faith. This is also not helpful, because it’s untrue on every level. People tried to convince us of lots of things. People had opinions, and that was hard. Infertility is not as black and white as it seems from the outside looking in. I heard countless, “Just do IVF! It worked for my sister!” or “God will bless you with a baby when you’re ready.” It’s not that simple, people. I wish it were.

Five years had gone by since my first infertility appointment in Salt Lake City.

In 2011 we moved to Boston. We happened to live down the street from an amazing hospital, MGH (always among the top ranked in the nation), so we decided to go see a fertility doctor there after the nudge from my new friend L. She was seeing the same doctor at the time and convinced me to give him a shot. We just went to get his opinion. We had little intention of taking any action, but we figured we ought to take advantage of being so close to MGH. After our appointment our doctor agreed that I was probably a good candidate for IVF and they did the standard initial blood work that they would do for any new fertility patient.

The next day a nurse called to tell me that my prolactin levels (a hormone that tells your body to produce breastmilk) were high and that I needed to come back in to be retested. The nurse sounded very urgent on the phone and I asked her what the concern was about. She said if my prolactin levels were indeed as high as they thought they were, I might have a brain tumor.

This information was not at all concerning or upsetting. It seemed too weird to take seriously. The next morning I went back into the office for more blood work. Sure enough, my levels were high again and they scheduled me for an MRI right away.

I had my MRI on December 20, 2011 at 11pm. It was late, cold and snowy. It was a weird experience. Not awful, but not pleasant.

My friend is a radiologist at MGH and called me the next morning with my results. It was cold and snowing. Peter and I were driving down McGrath Highway headed to do some last minute Christmas shopping before we left for Utah for the holiday. When the phone rang we pulled over into the Somerville Target parking lot to hear the details.

I have a very small tumor on my pituitary gland called a prolactinoma. It’s no big deal. Basically the prolactinoma messes with my prolactin levels, which messes with ovulation. From what I understand it sort of tells my body not to ovulate because I’m lactating, even though I’m not actually lactating. Typically this problem manifests itself because a woman who is not lactating and all of the sudden starts lactating is alerted of a problem. I never lactated so there was no sign of this.

Side note: Had I followed through with the initial blood work in New Jersey, we probably would have found the problem then. Also, checking prolactin levels should have been routine for my Salt Lake doctor, which he never did in THREE years of banging my head against a wall. Jerk. I want my money back.

After my diagnosis, the fertility doctor sent me to a neuroendocrinoligist. She prescribed me Bromocriptine, which is one tiny pill a day that regulates my prolactin levels. Easy!

I was pregnant two weeks later.

Henry came home from the hospital on October 27, 2012, our seventh wedding anniversary. Exactly six years TO THE DAY after I stopped using birth control and officially started “trying”.

I hope to never take one single day with Henry for granted. Not one. So far so good.

(Read about my pregnancy announcement, the day I found out I was pregnant, and Peter’s reaction to my pregnancy)

This entry was posted in Baby, Henry, My Opinions, Our Life. Bookmark the permalink.

8 Responses to My brain tumor

  1. McCall says:

    I always knew we had a lot in common. It took me four years to get Lennon. And guess what? My prolactin levels were doubled what they should have been!! My stupid Dr’s in SLC NEVER tested that hormone, and it took moving to Pittsburgh and seeing a Fertility Specialist to draw some blood and do some correct testing. SLC OBGYN’s should be fired. I was put on Parlodel and was pregnant 2 weeks later {miscarried, but at least we figured out how I could get pregnant!}. Then I got Lennon 🙂

  2. McCall says:

    ^^^ Just read that Bromocriptine and Parlodel are the same thing ^^^ Too crazy.

  3. Heather says:

    I am just reading these posts on infertility and the tumor. I’m so sorry you had to go through all of that! I don’t know anyone who’s dealt with infertility who hasn’t found getting from one side of it to the other a defining period in their lives. Thanks for sharing your experience.

  4. anna says:

    What a relief that the tumor is “no big deal”. Brain tumor = no big deal seems ironic, but I’ll take your word for it.

  5. Lesli says:

    Oh my! I feel like I should be able to muster more of a response but a brain tumor?!

    I can’t imagine how frustrating it would be to have people sharing their opinions on your infertility for years. It took me somewhere between a 6 months to a year (I couldn’t bare to keep track) to get pregnant with Natalie, which I know is nothing in the scheme of things. I would often come home from church or errands nearly in tears because of someone telling me I needed more children. How many strangers needed to come up to me in the mall or grocery store telling me its time to have another child? Once she was born I always grateful for the experience, for the perspective it gave me. I have always tried to never pass judgement on other’s family situations. Utah is the worst place in the world not to be pregnant, Josh and Natalie are only three years apart! Its not even a gap!

  6. Pingback: My miscarriage | the sommerkorns

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