And Here We Go Again

By in

It is now 2017. Many things have happened in my life since I had previously claimed that I would be making no more updates to this site. At the age of 35 (in 2013), my husband and I began discussing plans for permanent birth control and those discussions ultimately led to us choosing to have more children. I gave birth to a beautiful baby boy in December of 2013, and a beautiful baby girl in July of 2016. I am somewhat amused to share this, since I previously said I did not plan to have more children after my return to fertility following treatment of Cushing’s Disease. Nonetheless, I now have 4 children in total; ages 19, 15, 3, and 7 months!

I had become quite a gym rat over the years until my son came along. As you can imagine, having a new little one at home makes it difficult to find time for working out, and even when there is time, who wants to ditch your little one to go to the gym? As a result, I had gained back a little weight, but not enough to be alarming. I was still very pleased with my appearance and my health, and happily accepted the 10 extra pounds in exchange for my little boy. When I became pregnant again, two years later, it had been a long time since I worried about my weight, and I had a bit of pudge from the start of the pregnancy. I felt certain it was just the change in lifestyle. Still, with the health and well being of a little one growing inside of me, I decided that it would be prudent to have my cortisol checked…just to confirm that my little bit of extra belly was the result of my own doing. I had not had any labs done for years, so even though I am sure the doctors believed all was well, they happily obliged me with some testing. My cortisol came back at 25, which was only slightly above the high end of normal. Any result below 50 is still considered acceptable. Additionally, the doctors explained that pregnancy is a stressor on the body, so they felt that a level of 25 was very good. With the reassurance of these results, I continued my pregnancy without any further thoughts of Cushing’s Disease.

As one would expect, after delivering my second baby in two years, now 39 years old, I held onto the baby weight a little longer than I had hoped. While I only gained twenty-four pounds in total during my last pregnancy, I only ever lost ten. Again, in my delight over having two new bundles of sunshine, I felt the extra pounds were no biggie. I also knew the weight was going to hang around, as I had even less time to entertain the idea of working out than I did before. I was still stuck in maternity pants five months after delivery with no relief in sight. I decided it was time to replace the wardrobe…a ritual that was becoming all to familiar. The final verdict…size 8. That was quite a bit to hold onto after being size 4 for a few years…but again…totally worth my babies!

At the same time, when one experiences something like Cushing’s Disease, there is always a little voice in the back of your head that makes you question every little thing that is reminiscent of the experience. Was it my imagination, or was it getting a little cushy between my should blades again? Was it my imagination, or was I a little padded around the collar bone? I knew that I did not have this during my pregnancy, and it wasn’t baby weight. I had my cortisol tested less than a year ago, probably unnecessarily. I was nursing my daughter, and had not resumed my periods, so that was no longer a useful indicator of my hormonal health. Was it time for me to just leave well enough alone? I passed it off as just being paranoid and decided it was time to get serious about eating better again, even if I didn’t have time for exercise. A few weeks later, it happened. I put on jeans that I had recently bought…jeans that I bought post baby…to accommodate my post baby belly…and I could not button them. I started pulling out the photo albums to double check what my face looked like when I was pregnant with my son and when I was pregnant with my daughter. It seemed that my face had been notably slender during both times. The rounding of my face was not pregnancy weight gain, it had begun after and I knew it was time to make the call.

As I suspected, the lab work indicated high cortisol. The urine test came back in the 120s, the blood work indicated high cortisol, and 2 of the 3 saliva tests came back high. A few weeks later, an MRI at John Hopkins confirmed the recurrence of a pituitary tumor. I opted to stop nursing my 5 month old infant, as I was reading mixed reviews about how excessive cortisol exposure during infancy may or may not affect her. The fact was, it was being passed to her, and with the rest of the facts being hit or miss, I felt it was safer to just call it quits. This was very disheartening to me, as I have always placed high value on providing my children with the health benefits of breastfeeding…and now I had to wonder if I had been poisoning my daughter instead. I know, I know…probably unnecessarily dramatic, but I wasn’t giving her the \”liquid gold\” that I intended to.

The confirmation of my tumor came on December 23rd, and the earliest surgical consult I could get was March 23rd. So now I wait…and wait…and wait. I haven’t even weighed myself this time. I don’t own a scale anymore, and I really don’t care. I will get a weight before my surgery, but I really don’t know what it is right now. I do know that I am borrowing size 10 pants from family and friends rather than wasting money on more clothes. I know I am seeing the changes more an more as the weeks go by. The slightest side burns are back. The back pain is back. It is still very mild and I would not think anything of it if I did not know why it was there. I go from feeling very sleepy to being wide awake at the time I would like to go to bed. I wonder if it is all still in my head. Am I looking for symptoms just because I know what it looks like? I don’t think I am.

All in all, I feel very apathetic about it this time. The first time, I was ecstatic that a cure was on the way. Later, when I had my false alarm, I was angry that the odds of full recovery were no longer in my favor. Now, I just want to shrug my shoulders and see what happens. As I mentioned earlier, my odds of recovery after the first surgery were 90%. Now, I can only hope to be on the right side of 50/50. I feel like there is no sense in stressing over it. It will either work or it won’t. I am not thrilled about the idea of maybe someday having to radiate my pituitary gland and/or the idea removing other important parts of my body, so I really am hoping it works. However, even if a second surgery appears to be successful, it will be impossible to be excited, relieved, or grateful if it does appear that I am cured (again). The reality of recurrence is now part of my journey…so can I ever really say that I am cured? Guess not.

I wish I could end on a more positive note. Over the years, I have received many emails of appreciation from others who are traveling this journey who found hope and inspiration in reading my story of recovery. I did not want to add this page, as I did not want to take that away from anyone. However, my husband kept nudging me to keep this thing going online, and it is what it is. It is my hope that I can return in the future with further updates that you will find encouraging and uplifting. Until then…

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