Seja's Journey Part 2

I have learned a lot of hard lessons this past year or so. When you go through something like this, there is no room for pride. I tried. I tried to be that island. The one who could do it on her own. I learned really fast that I needed a support system. I learned to ask for help no matter how hard it was to do so. I learned that the people you least expect to come through, do. The ones you thought would, don’t.

The weeks prior to my RAI (Radioactive Iodine), I was taken off my thyroid replacement medication. A lot of people who have never been through this level of hypothyroidism, think they know what this level of exhaustion feels like. I can guarantee that they don’t. I remember my first appointment with my Endocronologist after my surgery and she said to me, “How are you feeling?” I replied, “Ah, ok for just having surgery.” She shuffled some paper and said “Well, that was the easy part.” I laughed and kind of blew her off. I have to say that she was so right. My surgery was the easy part.

At this time, I had a 6 month old and a 23 month old. So, I knew what exhausted was. However, when I stopped the meds, reality soon set in. The days became progressively worse. It started small. Dishes and laundry didn’t get done. Dinners didn’t get made. Showering became work and I all but lost the ability to get out of bed. Literally. One day I got up, fed the girls and sat on my couch while the girls were playing in the living room and I could barely keep my eyes open. I was sitting there with my mouth hanging open. Literally. This is the lethargic that I speak of. It was the first of many times that I swallowed my pride and asked for help. I picked my phone up and called my Dad. I told him that I couldn’t go on. I needed him and his girlfriend to come and watch the girls while I took a nap. NOW. I was worried that I couldn’t take care of my children. My reaction time was so slow. I worried daily if I was capable of being alone with them. Naps became a necessity to get through the day. I’m not talking cat naps. Im talking 2-3 hour naps, waking up tired and forcing myself to make it through the rest of the day. If it wasn’t for my girls, I don’t know how I would have gotten through this year. They were the only reason to get out of bed. The only reason to keep going. I could have so easily pulled that blanket up over my head and stayed there.

The day came to take my RAI. I hugged my girls tight and kissed my husband goodbye and drove off. I sobbed all the way to the hospital to swallow my pill on January 10, 2012. It wasn’t because of the pill itself, it was the fact that I wouldn’t be able to touch my girls or my husband for a week. I went into radiology and signed my release. The radiologist oncologist was there with me to answer any questions that I might have. I didn’t have any. I swallowed and drove back to my neighbors house. They live kiddie corner from my house and the room that I would be staying in stared right at my home. My neighbors, who are now dear friends of mine, made me feel so at home. My digs were pretty sweet. I suffered from terrible brain fog and my memory has never fully recovered. I used to have a great memory, like a steel trap. Now, I am forgetful. I need to write things down. I ask the same question a couple of times. I sometimes forget where I am going while I am in the car. During isolation, I packed books to read. That was the one plus of this “vacation” as most think that it is. However, I couldn’t read anything. I would find myself rereading every sentence, unable to retain any of it. I couldn’t follow movies either. I ended up watching mindless television and not really paying attention to it. It was just background noise.

I spent the week crying, sleeping, having long and meaningful conversations with my Neighbors/friends, face timing with my girls and talking with my counselor via telephone. There were times that I didn’t want to speak with anyone for anything.

I got to leave isolation and go straight to the hospital for my full body scan before I could go home and see my girls. The radiologist saw alot of radioactive uptake in my bowels and wanted me to do a bowel prep, like you would for a Colonoscopy, to make sure that it wasn’t a malignancy. I went home and prepped my bowels in tears. I just wanted to be left alone. I went back in the morning and thankfully the uptake had passed. I came home to 2 little pairs of arms wrapped around my neck. The best feeling ever. My high was short lived.

I had some side effects from the RAI. I had a bit of nausea. I lost my sense of taste for about 3 months. The radiation had destroyed my taste buds. Some salivary gland swelling and soreness. I lost a lot of hair, not shaving my head type of loss. However, I could stand in the shower and feel clumps of my hair sliding down my legs. Thankfully, I was blessed with thick hair. None of those effects matched the struggle with exhaustion, weight gain, and debilitating depression that have consumed me this past year.

I was just starting my meds again and it was a slow build up. I still wasn’t at the level I should be and every 6-8 weeks was raised by 25mcg. January 2012 to September of 2012 was filled with doctors visits and a lot of blood draws. I was still gaining weight. I have gained a total of 50lbs. since my surgery. I needed to hire a babysitter to help me out. She came in and helped 2 days a week. It was money well spent and I could rest and know the girls were taken care of. The months seemed to pass in a blur. August came and the Oncologist wanted me to come in for my 6 month check. He wanted to do some blood work first and not go straight to the scan because I was still struggling without the proper level of thyroid replacement. He called the next day to inform me that my markers were elevated and that I would need to do the scan. I stopped my meds the next day. My journey back into lethargy had begun.

The day of my scan had come and off to the hospital I went. The tech had informed me that he didn’t see anything and I went home overjoyed. The next day I was standing in my kitchen talking with my friend when the Oncologist called. He called to tell me that the radiologist had seen some tissue in my neck and I would need to be dosed with RAI again. We scheduled it for a week out and I stayed on my low iodine diet. I made arrangements with my friends to come back and stay for another week and for people to come in and help Steven take care of the girls.

I was dosed again on October 2, 2012. This time around I was prepared for what to expect. I cried when I left my girls. I couldn’t stand to leave them AGAIN. My littlest one was aware of my absence this time and my oldest didn’t understand why Mommy was leaving. I drove off, sobbing. I went to the hospital and then back to my friends home. I was tired. I was horribly sad. I was overwhelmed with feelings of guilt, inadequacy, and I was tired of being a burden. I won’t know if the RAI worked until March 2013, when I go in for my check. I am hoping for an all clear.

There are some things that Cancer did in fact take from me. It took my ability to continue to breastfeed my daughter. I had a hard time dealing with that and the guilt that came along with having to stop. Cancer took the first year of my daughters life from me. I can’t remember when she got her teeth, crawled, walked, talked. I was in a fog. It kills me to even put that in writing and throw that out into the world. How horrible. How could I not remember? I just can’t. I love my children more than life itself and my baby grew up and I missed it. It took its toll on my marriage. It has tried our bond.  My husband has stood by my side when I couldn’t stand to be present emotionally. He held my hand when all I wanted to do was to run away. He continues to support me. He has helped me write this and put this out there for the world to see. Writing this is like baring your soul. I’m good at putting on the brave face as I am falling apart. I know most of my friends were aware of my illness but not really aware of the toll it took on me and my family.

I hope that I have shed some light on the harsh realities of Thyroid Cancer. It isn’t the “easy” Cancer. NO Cancer is easy. I have an invisible illness that effects me daily. Some days are good and some days are bad. Some days I can rearrange furniture and the next I can barely cook a meal. I am the heaviest that I have ever been in my life. The last week of my low iodine diet, I gained 5lbs. Anyone who knows what a low iodine diet consists of knows that it is a far cry from a feast and I managed to gain weight. I am a big girl but I have struggled with my new larger frame. However, this larger frame is here to tell you my story. It is the frame of a fighter and a survivor. I am learning to love myself again and to embrace these new curves. I am learning to be less critical of myself as a person and mostly, as a mother.

My name is Seja, and this is my story.