Wow. It’s been a bit. My motivation to sit down and use the rest of my brain capacity that I have left from the brain fog and side effects of all my medications has been at an all-time low. If you haven’t read my family’s Caring Bridge recently ( I highly recommend that you should ) I have had, let’s say, some interesting changes to my routine.

Diabetes

Food has been a saving grace throughout this whole thing. I can deal with being a sickly child a lot better with a burger or slice of pizza in my hand. So when I was told I had steroid-induced diabetes and would now have to count carbohydrates and sugar, I wasn’t too happy. You don’t realize how carb-loaded your favorite foods are until you have to count them. Needless to say, it sucked and felt like “Why not?” of course, something like this would happen to me. My luck in the health department is very poor as you can tell so it was almost not a surprise that I would get diabetes. I can’t lie it was devastating having to always think about my next meal and if it would fit into the guidelines. I was allowed 63 carbs per meal, which doesn’t leave a lot of foods for me to eat, at least a decent portion of said food. It made the wait for my bone marrow transplant that much more horrible and taxing. We would go out to restaurants and the most I could get sometimes was a salad, Yay, and a diet soda to somewhat satisfy my sugar cravings. My blood sugar would hit the 500s on my worst days and would never fall above 150. In normal people, a blood sugar of 500 would mean that they would be put into a diabetic coma. When my Dad told me that, it made eating and counting carbs even more tedious. I hope that it will go away after my transplant but if it doesn’t then I feel like I’m going to be miserable for the rest of my life.

Clots

When I get bloodwork done I always have a minimum amount of about 7 vials that span from 3 different doctors. One test specifically is a D-dimer test. A D-dimer test looks for D-dimer in blood. D-dimer is a protein fragment (small piece) that’s made when a blood clot dissolves in your body. People who get this blood test done usually have to wait for their results ( 30 minutes ) but since I’m a sickly child, I don’t have to wait. I only get it done due to my infusions the next day. We have been outside the hospital for a while now so I have a lot of readings for the D-dimer. Each one says inconclusive or normal range, again because I am a sickly child, these results are normal because of the cocktail of drugs in my body. However, life decided it wanted to add even more spice to my routine. My Dad and I were sitting in the living room just doing our own thing together when we got a phone call from Kaiser. This is not out of the ordinary I get these calls about 6 times a day. This time instead of an AI answering it was a bloodwork employee. Her tone of voice made me scared immediately. She hastily asked if my Dad and I were at home or in Urgent Care. Alarms started ringing in my head and the possibilities of what she could say invaded my brain. Long story short she told us that my D-dimer had indicated blood clots and that I needed to get my butt to Kaiser immediately. Well, she didn’t say those exact words but you get the gist. They slathered gel all over my legs and chest and ultra-sounded me. My hope that this was just a mix-up was squashed. It turns out I had 4 blood clots. Two in my left leg and two in opposing lungs. I think my naivety of what blood clots’ words helped me not freak out when I was told the news. I had handled much more so it felt like another layer to the disastrous health ride that is my life. The fact that I had blood clots wasn’t too much of a concern to my doctors either because all I was sent home with was another medicine that I had to stab myself with during the day. Heparin hurts to shoot yourself up with, which sucks when you have to give it to yourself 4 times a day. Even now I don’t know if the blood clots ever actually fully went away, I have a feeling that it got stuck behind everything else that was wrong with my body.

A Great Surprise

Surprises are one of my favorite things ever. Especially when it’s heartfelt. But then there are not-so-fun surprises. Like when I found out that I had 8 fractures in my back due to long-term steroid use. Oh, but this was a great surprise because I didn’t know that my condition could get any worse before my transplant. It felt like I was trying to get to the end of the marathon but things kept on getting thrown at me. This resulted in me having to rent a hospital bed and get a snazzy back brace. I was in so much pain I could barely sit up. I would pee myself because I couldn’t get to the bathroom fast enough, which was great for my mental health. I felt like a newborn that needed to be potty trained. It was demeaning and not a fun experience. We were also worried about how it would affect the bone marrow transplant process, thankfully it didn’t and we were able to keep our same intake day. I was able to do physical therapy throughout my stay in the hospital and heal some of my fractures. I still need a walker to get around and get tired after a short distance, but I am still better off than when I was first admitted.

Healing from the outside

My time in the hospital felt like an eternity, but once I was out it felt like barely a week ( it was around 2 months ) It doesn’t help that I only remember snippets of the stay now, whether that’s my brain trying to protect me or the vicarious amount of drugs I’m on, we’ll never know. The actual day of discharge was filled with saying goodbye to all my lovely nurses and doctors and a delightful send-off and rings of the healing bell they had installed on each floor for the patients that were “healed” It was like one of those moments that you see on Instagram or cheesy commercials on TV. I felt overwhelmed by the love and support that everyone in that hospital gave me and I will always be eternally grateful to everyone at The City Of Hope hospital. The drive home was even scarier because it was filled with anxieties and worries about what would happen when I got home. It was a summation of almost 8 months of illness, pain, and happiness. Not remembering most of it also made it hard for my brain to compute what had happened and what I had just “finished” Remember what I was saying about my luck? Well, it just so happens that about two weeks into my homecoming, I started getting horrible bouts of nausea and extreme vomiting. The fact that I had around 30 pills to take two times a day didn’t help with my stomach issues either. My nausea meds weren’t working and we tried everything under the sun to help with it. From ginger gum, nausea sweets, and peppermint essential oils, you name it. Nothing helped. I knew something was up, but was it worth it to tell my parents, what if it was nothing and I put them through more than necessary? What if I’m being dramatic and making more problems for myself? I stood firm and trusted my gut even though it was kicking my butt, and told my parents that I wanted to get evaluated. This led to a two-night ER stay and one hospital night stay. They examined me for GVHD ( Grafts vs Host Disease ) which is a systemic disorder that occurs when the graft’s immune cells recognize the host as foreign and attack the recipient’s body cells. “Graft” refers to transplanted, or donated tissue, and “host” refers to the tissues of the recipient. Around 80% of people post-transplant have some form of it, but it varies on strength and time. Thankfully mine isn’t chronic and was just flaring from time to time. They had to bump up more of my steroids but it’s better than not eating or drinking and feeling nauseous all the time. Now that that is solved I can finally focus on my 100 days. This is when most transplant patients become almost fully engrafted and are allowed to go out and eat more foods such as raw fish, deli meats, and unpasteurized cheeses. It’s kind of the end marker of the journey they say. My 100th day is on December 28th and I couldn’t be more excited. Having something to look forward to is exciting but nerve-wracking because a billion things could happen in between. I could have another flare of GVHD, I could develop more GVHD, and so on. I am trying to stay positive and look at all the things I have to look forward to, but it’s hard when practically the whole year has not been in your favor. There are a lot more things that I’m sure will come back to me eventually but I am content with what I have stored in my memory banks for now. As for what actually happened during my stay in detail, deserves it’s own post I think, but in the meantime here’s an update on how I am doing right now and as usual, thanks for reading 🙂