Itās been a month since radiation and just over 3 months since spinal surgery, so I figured I should update you all on how things have been going. To be honest, I havenāt really wanted to post anything because I was afraid it wouldnāt seem very uplifting or hopeful to anyone reading, but the reality is that itās been a tough month.
Symptoms really kicked in about a week after radiation. The inflammation in my spinal cord got so bad that rather than finish a short course of steroids, I needed to double the dose and have been on them ever since. All of the symptoms Iāve had since surgery have gotten worse (neck/back pain, nerve pain, numbness, tingling, sensory deficits, muscle weakness, trouble walking), and I developed severe esophageal thrush (which is apparently common after this type of radiation). The thrush made it feel like I was trying to swallow a baseball down a small straw every time I ate or drank Anything (including water). The worst of it persisted for about 2 weeks (even with strong treatment), and it has otherwise felt like I have strep throat for the last month. Anything spicy, hard, hot, or cold irritates the throat, so it really takes the enjoyment out of eating. Unfortunately, steroids make your appetite insatiable, so youāre constantly ravenous but everything you eat and drink hurts. Iāve been working so incredibly hard to make healthy food choices despite these challenges, yet Iāve been putting on a ton of weight thanks to the drugās effects on my metabolism and fat storage. My face is super swollen (so much so that my jaw hurts sometimes) and Iāve put on about 15 lbs in the last couple weeks alone. My clothes arenāt fitting anymore, Iām bloated and extremely uncomfortable. And discouraged.
Steroids also have the lovely side effect of taking away your bodyās ability to sleep. Iāve taken more sleep meds than most humans ever should in the last month, and amazingly, I still canāt get more than 4-5 hours of sleep at night š¤Æ Now tell me how a body is supposed to heal when itās getting half the sleep it needs?! I canāt nap during the day because of the steroids (I take them right away in the morning), so what I get at night is what I get!
Iām running on a severe sleep deficit while trying to recover from radiation and surgery, not give in to horrendous cravings, deal with a constant sore throat, try not to cry every time I canāt fit into another piece of clothing, oh, and deal with the fact that itās like Iāve taken 100 steps backward in my recovery from surgery. I still canāt drive. I still canāt walk safely for long distances without an assistive device. I canāt walk up or down inclines without having something or someone to support me. I need frequent rest throughout the day, where I can physically rest my shoulders and head against something. Still canāt lift anything very heavy (including Sloane). My right shoulder range of motion is still very limited, so overhead lifting and reaching are minimal. Still need a chair in the shower. Still have to prop my arm up on the wall while I do my hair. My mind/emotions are a mess from all the medications, lack of sleep, and stress. I canāt get minimum tasks done during the day, so am constantly feeling like Iām drowning in everything, which is then compounded by everything else. The nerve medication makes my vision blurry, so I canāt really read much, or for long. I have had to increase the font size on my phone in order to see better. I have a billion physical books Iād love to read, but only have short periods of time during the day when my vision is clear enough to read them. I have trouble holding a pen or writing much. My thumb numbness makes typing on a phone really frustrating, despite trying different accessibility changes. Iām dropping stuff constantly because of diminished grip strength in my hands and numbness in my thumb. I canāt look down for very long, so things like meal prepping have to be quick or they quickly become painful.. typically I need to sit down and rest my head/neck/shoulders in the midst of any prolonged task at the counter or table.
Now, Iām not saying all of this to complainā¦ itās just the reality of my life right now. Iām hoping I can get off these steroids in the next couple of weeks, but we have to see how my body continues to respond to tapering off of them. Iām hopeful that my sleep will improve drastically once Iām off, and I know that will help a lot of things on its own.
Iām still doing outpatient neuro physical therapy to work on my walking and neck and will be meeting with a new ortho PT team in a few weeks to continue to address my right shoulder. I have about 400 at-home exercises that I pick and choose from each day. Iām seeing progress with my hard work, but the setbacks from radiation have absolutely been discouraging and frustrating.
Amongst alllll of this crap, Iām trying really hard to remain present (and patient) with my family. We havenāt been able to do a lot of the things I would love to be doing on the weekends, but as has been the case for the last 4 years now (š) weāre doing our best to make good memories together. Iāll include some photos of our fall fun below.
I canāt believe that itās less than a month away from our benefit š¤Æ and Iām beyond excited to see some of you there! š Thank you to everyone who has reached out and/or provided support or prayers. This past month has just been so overwhelming and all-consuming that Iāve essentially kind of holed up while trying to survive. Weāre so very tired of living in survival mode. Itās felt that way for the last 4 years, but especially since May of this year with the start of lung radiation, and it just never settled down. Iām still working and praying every day for healing, peace, and lots more time and opportunities for fun with my family ššš»
Lauren MG Doyle 