Wednesday, August 30, 2017

Chinese food, specifically Sesame Chicken

I asked for Chinese food for my birthday, sesame chicken specifically. We arrived at an older restaurant with authentic Chinese decor, the tables were small and each restaurant goer sat somewhat near the individual at the residing tables. I know attending a local restaurant for one of your favorite meals may not seem like anything special, and I am sure we looked like your typical dinner date. You sat at a table kitty corner to our small two person setup. Your table was slipped into a corner near the wall. You didn't know, but this dinner was not any ordinary dinner for me - this was the first birthday dinner I had in 4 years. The first time in 4 years I have sat at a restaurant on the day of my birth and consumed a meal with family. The first time in four years I wasn't attached to a feeding tube sending predigested nutrients directly into my abdomen through a tube.

As I slowly ate my chicken I chatted with my mother over dinner. The sesame dressing was perfect, and the chicken was tender. I enjoyed every bite, making sure to savor each swallow. It was all new to me. Our conversation swirled around my growing hair, post treatment anxieties, and being reintroduced to the real world after years of chemotherapy, and a bone marrow transplant. My life, for the majority of the past five years, had been nothing but one doctor appointment after the next, one proceed, one surgery, etc. My entire existence orbited around my diagnosis by no choice of my own. Too sick to work, too sick to adventure, too sick to even eat. My mother coxed my nerves and told me I was doing wonderfully, that anxiety is normal for someone in my position. We then moved our conversation to the excitement in my new found ability to eat. A recent treatment had kickstarted my paralyzed digestive system enough for me to once again enjoy simple pleasures in life such as food. I expressed the deep please it was to remove my last feeding tube, to be completely medical device free after so many long years. That's when you cut in.

"This girl over here keeps talking about her surgeries. Uh. I am trying to eat!"

I was taken back. I froze, completely unable to hear what my mother was saying. Your words filled my mind and swept everything else away like a title wave. The disgust with which you said these words stung. That is my life. My whole life. You assumed I was talking about a surgery, a brief moment in time one can simply move past, but what I was talking about was my entire existence. While most people have a plethora of topics to chat about over a meal such as work, weekend adventures, and social outings - I have one. My health. My health has dictated every second of my life for the past 5 years, down to how I ate, how I breathed, and how I spent my days. There was no in-between for me. I was forcibly stuck to oxygen tanks, feeding tubes, and central line that kept my fragile body alive.

For a brief moment I envisioned sitting at this table in a different life, one where I had other topics to choose from. I talked about my children, my long career as a teacher, the beautiful home my husband and I had purchased - but those things were only a fleeting dream. How I wished they were true. My young body now sterile can never have children, my career path derailed after only my first year, and my medical debt has become a pool I could swim in. I quickly snapped back to reality. I looked down at my chicken, the luster gone. "What else could I talk about?" "Should I just keep quite?" "Maybe Netflix? Does my mom even watch Netflix?" I doubted myself briefly, thinking of topics that didn't exist to appease you, however; distain quickly took over the shock, and my head swam with the things I would say to you, the words I could muster to make you regret your inappropriate outburst. "I am sorry my existence is a burden to your meal," because this is what your comment implies - even though you didn't know it. Instead, I took a bite of my glorious sesame chicken and remembered to be grateful for this moment. This moment where I was chewing, swallowing, and digesting. No matter how badly I wanted to show you the error in your judgment, I wasn't going to let you ruin my fist birthday meal.

I am not ashamed of the life I have survived, the 5 years I have conquered. That life will always be a part of who I am; the many scars will tell stories of the warrior who overcame unimaginable odds. Honestly, that fact that I am alive to disgust you over Chinese food is a downright miracle. As my life now moves forward and I am reintroduced to the work force, social gathers and weekend adventures, excitement fills my mind. Someday soon I will have topics to chose from, a luxury you didn't know eluded some.


I hope you enjoyed the first non-medical-update post I have written in over a year! My mind is swimming lately! I adore it. Finally after months of fog and muddle from chemo, I feel the writer in me start to bud again! Xoxoxo

Thursday, August 17, 2017

day +226 post hsct update

I am so happy to report good news finally! They say the first year post HSCT is a rollercoaster, and boy were they right! This roller coaster had all my doctors, and myself convinced too. Convinced I had headed down the road to relapse. Little did we know I simply received a different gift than most patients who previously received the transplant. While many patients see an almost complete remittance of symptoms and halted progression, my refectory to treatment case of scleroderma seems to have only slowed. My symptoms are still progressive, however they are greatly slowed compared to their trajectory pre-transplant. I will take that over being dead for sure! lol Not to mention I did see some vast improvements symptom wise, even a reversal of specific symptoms! Yes, some of the symptoms I saw disappear have returned, but we aren't gong to call it a relapse just yet since they are reoccurring at a slow pace. My team is reevaluating at a year post HSCT both in Chicago and here in Seattle. So, lets divulge into the last month shall we?


  • The new medication my Digestive Disease Specialist prescribed for my Gastroparesis (GP) finally arrived; Domperidone. Domperidone is a prokinetic drug, which is fancy terms for a drug that increases gut motility by increasing frequency of muscle contractions, or making them stronger. It is a miracle drug, similar to Reglan, for so many patients in the GP world. Unfortunately, I didn't see much improvement from this drug even though I was taking it three times a day. It works with a very specific receptor in the brain, which lead us to believe maybe my GP wasn't stemming from that specific receptor. After some research we traced back my GP symptoms to when I stopped my antidepressants about 5 months post transplant. Turns out 95% of serration is found in the gut, so a sudden depletion of serotonin could definitely aggravate GP. We decided to start Mirtazapine, a tetracyclic antidepressant which has shown in many case studies to be a very useful drug for GP patients since it boosts appetite, and curbs nausea/vomiting. Well, it worked! It worked almost immediately! I took it in the evening, and woke up able to eat a whole bowl of oatmeal! HAPPY TEARS. My doc explained that since I had been on antidepressants for so many years, I probably had GP for the same amount of time my esophagus had not been working, however no one ever clinical caught it since I was taking a drug that was helping my stomach move by chance. When I stopped the antidepressants 5 months post HSCT, the GP flared. So the GP isn't really a new issue post transplant, it is simply an issue that was going untreated very suddenly. So for now we are postponing GJ feeding tube surgery to see just how well this new drug will support my unhappy stomach! In a few days I should be able to remove my NJ and sustain completely off oral intake! ...I am actually thrilled to be back on an antidepressant. I wasn't doing so hot emotionally the last few months, so it was a welcomed addition.
  • I saw my Scleroderma Specialist who seemed happy with my current progress. Last he saw me was in May when things were going horribly awry post transplant - my skin score had increased, my joint swelling had worsened, my lung function decreased, and my stomach crapped out! Luckily, this appoint was full of smiles, and good reports! My Modified Rodnan Skin Score, a test where the physician pinched areas of your skin to test for thickness, showed my skin drastically loosened since last time I saw him! I am now an 8, as compared to 13 in May! My Echocardiogram, also known as a heart ultrasound, reported a stable Ejection Fraction of 60%, and a normal pulmonary pressure of 20%! That is all amazing news! Both results were the low end or normal - and I couldn't be happier! My Bone Density Scan did show some bone loss, with most bones registering around -1.7. This level indicated Osteopenia which can often times be treated with supplements such as Calcium, and Vitamin D. I was prescribed a heaping helping of both. It is something we will have to keep an eye on, but for now, it's manageable. My PFT, aka Pulmonary Function Test, showed comparable results compared to the PFT at my six month follow up in Chicago - which were decreased from pre-transplant. My DLCO was siting at 59% this time around. My doc told me while it is lower than he would like post HSCT, he believes they will rise! While the PFT wasn't ideal, my docs are considering it stable enough to not cause immediate alarm, and to simply repeat the test in the next few months. Because of the improvements made since my last appointment in May, he decided that I did not need to restart immunosuppressive treatment at this time! I am thrilled!
  • I saw my Pulmonologist to review the recent PFTs, and he had the same thoughts as my Scleroderma Specialist. Not ideal post HSCT, but not bad enough to cause immediate alarm. He suggested another PFT, and a CT in October to look for a rise in my DLCO trends, and to rule out any new fibrosis, or infection. It was the first time I had seen him since my transplant and he couldn't believe how good my skin looked! He just kept staring at my hands and saying, "wow!" 

All in all I am doing ten times better than when I stepped on that plane to head to Chicago for my HSCT. Is life perfect? No. Am I healed? No. Is my disease in remission. No. However, my life is absolutely more livable, and my disease has slowed its rapid progression. That I can manage. I am happily working full time, and just moved to a lovely new home. I have two cats I adore, and a husband that loves me. Life is good; I am doing the best I can to live in the now and be present for whatever extra time this treatment has given me. If you see me out dancing, attending events, or simply smiling wearing makeup, it's not because I am "healthy," it's because I savor each precious moment in life. So instead of saying, "I am so happy to see you so healthy," maybe just says "I am happy to see you happy," because that is the simply truth. 

P.S My hair is crazy and I don't know what to do with it! lol It sticks straight up. I am a hedgehog.