After some miscommunications with appointments (which have become an increasing problem for me), John took Preston to his ultrasound last Monday (Dec. 13). We fully expected to have a diagnosis of benign ganglion cyst; there was not a trace of doubt in my mind as I sent them off in the morning. Then I got a text from John in the middle of my full team staff meeting – the ultrasound was inconclusive – rhythm of soft tissue – could be a ganglion cyst – possible blood flow – etc. With each new detail my thoughts and my anxiety levels started to spin out of control.
Why had we waited so long? What did it all mean? What is the next step? When can we take this thing out?
I asked myself literally millions of questions. I thought of every horrible scenario that could possibly happen, and I had to wait until Friday to have a follow-up appointment with his doctor to find out the next step.
This was probably the most terrifying week of my life. I’ve been through other times of anxiety involving my own health. The thought process was the same, but my fear was intensified tenfold. There was something threatening my baby, my beautiful, smart, caring, thoughtful, little baby.
John and I decided that we weren’t going to tell our families until there was something to tell. There was no sense in spreading the debilitating worry that a possible malignant diagnosis casts on families. We told a few friends and some people at work. I know I was having a hard time focusing on tasks; John seemed more level headed than me. He is a rock. He holds this family together. He is what kept me going. One night, my Dad called me, and through the course of our conversation he used the quote “the best way out is always through.” I latched on to that. Countless times I wanted to sleep through the days of waiting for more answers. I even visited my doctor to see about getting some anti-anxiety medicine. She did give me a prescription, but I couldn’t take it while nursing (unless I dumped any milk that I pumped within 24 hours of taking the medicine). I wanted to take it so badly to be strong for my family. But John and I have had this conversation before, the first of many lessons I learned this week: Even though feeling of fear, worry, and anxiety can be consuming, they need to be felt. In fact, all feelings need to be felt, conquered, and put away. I could have taken Xanax, but it would have made me sleepy, unable to feed my baby, and useless to my family. The best way out is always through. Xanax could have been a way out for me, but it was not the best way for my family.
Another lesson that I learned (and this is a case of “fool me once shame on you, fool me twice or multiple times shame on ME) is to not use the internet as a doctor. Indeed, my mind was put at ease many months ago when I first googled the bump and discovered that it looked exactly like a benign ganglion cyst in every way. After the ultrasound results I started googling different possibilities, and that is when the terror closed in. I don’t even want to write the words or thoughts that were in my head because I just want to forget them. DON’T GOOGLE!!
I did get some peace of mind at our follow-up pre-op appointment with Preston’s orthopedic doctor. We knew early in the week that the next step was to biopsy the lump. We thought that was going to happen at his appointment on Friday. Being overcome with worry I called the doctor before our appointment, and I’m quite sure he thinks I am a neurotic, crazy person, because he asked if John would be at the appointment the next day. The biopsy is a surgical outpatient procedure and needed to be scheduled. The doctor was fantastic. In fact, my almost 4-year old who won’t even stand on a scale at a doctor’s office told me in the car on the way to the appointment “Mommy, the doctor is just going to look at my bump, that’s not scary.” The doctor said things like “Problems grow” and “I could swear it’s a ganglion cyst” and “if you had to see what I see on a daily basis, you would know that this is not a worry.” Those words got me through a very long weekend, until surgery on Monday morning.
I knew that we had a plan to move forward with this mystery, and the next step was surgery. We were supposed to get a call by Sunday night letting us know when to report to the surgical suite on Monday. Preston was supposed to fast before going in, so we thought we would get to go early. The call never came. We started calling every number we could find on our paperwork, but no one could find any record of a surgery scheduled for Preston. Finally, they said we needed to wait until Monday morning at 8 to call the doctor’s office when it opened. Our last attempt was to set our alarms for 5am when the surgical office opened to call one last time. They still had no record and again told us to wait until 8. I couldn’t sleep. We were sure that we weren’t going to get a slot, that they surgery would need to be rescheduled, that my anxiety would be pushed another few days. It’s the week of Christmas, who knows when we could reschedule, so many people will be out on vacation.
So we called the doctor’s office at 8. They asked us when he last ate, and we knew they were going to try to squeeze us in. John and Preston left immediately to head to the hospital, and my emotional roller-coaster continued.
I tried to make it a normal morning. I gave Luke some breakfast, packed his bottles for daycare, and dropped him off. I was going to head straight to the hospital, but John told me they were just waiting around and to stay home. So I went home and prayed and cried. And then I pulled myself together and went to Target, because – damn it – this is going to be a normal, wonderful, happy Christmas, and I needed to get a few more presents.
I should have John write this next part, but I’ll take a stab:
Back at the hospital, John and Preston waited patiently. Preston had his tablet, so he was occupied until it was time to head to the prep room where he became hysterical. He would not stand to have his weight checked, he wouldn’t take his clothes off to put on the hospital gown, he wouldn’t let go of John for any reason. He screamed and cried for Mommy. When they needed to take him back to anesthesia they first brought an oral sedative to try to calm him down, but he wouldn’t open his mouth. John tried to pry his mouth open to get the drops in, but Preston bit down so hard on the finger that he drew blood (but later apologized). Finally, John just left the room, and we are not quite sure what happened after that except that they gave him gas to calm him down and then hooked up his IV for anesthesia.
I arrived at the hospital just as the doctor was speaking with John about the surgery. When I walked in, in a blind tizzy and so very worried the first thing the doctor said was “It’s benign, and he did great.” He said that it looked exactly like a benign ganglion cyst, a pathologist confirmed, and that they sent a sample to the lab just for confirmation. He left the cyst in because a removal is a much more involved and needless process. Preston has a large bandage that looks like a cast on his wrist, but is otherwise…. Perfect.
John and I headed straight to the recovery room where my tiny child lay on a hospital bed, asleep, hooked up to many machines, but peaceful. I cried, but it was with relief. I also cried at the sight of him, thinking “so this is what it feels,” not knowing then or now how to put words to the feeling.
Preston woke up by himself after about 20 minutes. The nurse was concerned that he would be upset when he woke up. He was confused and sad, but just wanted to be held. She let me take him out of his bed a hold him in my lap. I told him that he was brave, and that I was so proud of him. John rubbed his back and held my hand, and all was right.
We had to stay in the hospital until he passed several check points. He also had to drink some apple juice to make sure that he could keep it down. That was a bit of a struggle because he kept saying that he wanted to get a drink at home. But I eventually challenged him to a “drink off” and he beat me (please don’t let this be a sign for his college days!!)). After his first cup of juice I think he realized how hungry he was because he wanted lots more juice and two bags of pretzels. Then at 2:30 they let us go home. We weren’t sure if he could walk or if he was still a little sleepy from the anesthesia. So we set him down gently. I held his hand as we walked down the hallway, and he jumped over a metal plate that ran across the hallway (I think it was a stream and he didn’t want to get his shoes wet).
Today it is as if nothing happened. He is back at school for his Christmas party, and we are able to move on with Christmas.
I have learned many things from this experience.
I will never again wait to have something checked out. We had a stupid reason for waiting, and I would have NEVER forgiven myself for waiting if it had turned out to be a problem.
I will not google medical issues. I’ve told myself this one many times before, and somehow I caved this time. I think it’s because I was so sure of it being a ganglion cyst, that I wanted to reaffirm. But all it did was terrify me.
The best way out is always through. This may become an anthem for my life. It doesn’t offer a lot of comfort when you are in the moment, I’ll admit. But when you are looking for alternatives to whatever hardship is facing you, it might be wise to think more deeply about the alternatives and know that patience, faith, and hope are the best alternatives: the ones that will get you “through.”
Children are precious gifts, and parenting is the hardest job on earth. We are so very lucky for all the advantages that are afforded to our family. We have an incredible health network within minutes of our home. We have an incredible support network. And we have two healthy little boys. I have a husband and partner that does so much more than should be required of him. He knows how to navigate all the parts of my heart, and his strength and awareness keep our family together.
This may not be our last crisis. I hope and pray that it is the worst, and that they are few and far between. I pray for all families who go through similar experiences where the results are not as favorable.