Show Your Stripes!
I’ve been quiet on my blog. The truth is that I haven’t felt great, and I kinda grew up on the concept of “if you don’t have anything nice to say, then don’t say nothin’ at all,” (thanks Thumper). I want to be real; but I don’t want to be a drag. This summer I felt like a drag. All I had to say was, “I’m thankful I get to stay home next year,” and “I don’t feel real amazing.” That got old to think about, so I assumed my friends who would read it would get sick of reading all about the same 2 boring concepts. Whether I was right or wrong, I kept my thoughts quiet and to myself. We had a great family beach trip, and it was a tough reality when your 60-something year old parents are taking 5-mile walks down the beach, lounging in the hot sun all day, playing in the sand with my 2 little boys and having all the energy in the world. Meanwhile, I’m having to take breaks from the sun and sit out from walks because I just couldn’t keep up. That’s hard to swallow. I’m 36. I should be able to do all that they are doing plus some, but the truth is that I just couldn’t. I started noticing that I had at least one moment during each day where I didn’t feel well.
When August came, I realized that the majority of each day I started not feeling well. Back pain and abdomen pain was becoming a regularity. In September, I did my bloodwork in order to be able to start another chemo round; my numbers were low, so I had to wait to start my regimen. I was scheduled to see my doctors in Tampa on October 11th, so I had tried to convince myself to just wait and speak to my doctors about my discomfort until my appointment. After my 2nd round of bloodwork I contacted them to ask if I could start my chemo round and decided to mention to them that I was having quite a bit of back and abdomen pain. They immediately wanted to see me for a CT scan and decided not to have me start a chemo round. It was going to be really hard for us to get down to Tampa so quickly, so instead we scheduled a CT scan at Emory. I was starting to get some anxiety about the pain because it was the same back and abdomen pain that I had when I was pregnant with Baker. That pain was the worst pain I have ever experienced in my life, and I was feeling anxious that the same pain was back. What caused more anxiety is that my obstetrician couldn’t ever seem to understand what was causing the pain, so I started to get terrified that I wouldn’t have answers or relief again. The pain got worse, and after 3 nights in a row of not sleeping due to so much pain (and anxiety), Mike called Tampa for advice. They sent us to Emory’s ER on a Sunday. The doctor on call ordered a CT scan, and admitted me into the hospital because he did not believe I could manage my pain at home any longer.
I should mention that I had 1 medical goal this year: stay out of a hospital. Well, in March I failed that goal because I had to have the lump removed on my face by sclerotherapy, so I changed my goal to staying out of the hospital this fall. Well, fail again. I mean, seriously! These are very low goals here, people! Most people could knock these goals out of the park, but my medical conundrum butt is like a moth to a flame when it comes to hospitals. Time to make a new goal, I suppose!
I got admitted, and the CT scan showed that my tumors have grown meaning that the chemo regimen was no longer working. The reason I was in pain was because one of the tumors that had grown the most is pressing on my blood vessel causing pain. Another tumor is pressing on my stomach causing my stomach to bloat which explains why I wasn’t able to eat my normal size meals anymore. If I’m being completely honest (which is the point of this post), I did not have a great experience with the nurses during this hospital stay. I wouldn’t get medications on time, so by the time I got them an hour and a half later I’d be so nauseous that I’d have to do anything to stop me from vomiting. Another morning I did vomit in front of the charge nurse; he never went and told my nurse, and then she didn’t check on me for another 2 hours. It was rough. I was on a lot of meds and felt like a zombie. I got released after 3 days or so and was happy to be home. My best friend Jiffy had flown in town and stayed with me at the hospital then continued to help me at home. Thank goodness for my parents to help take care of the boys, so Mike could focus on taking care of me. Tampa moved my appointment a week earlier, and Mike and I flew down and back within a day. They wanted to see me and get a CT scan to figure out a plan of action. Public Service Announcement: If you feel nauseous, drinking contrast for a CT and not throwing it up is a very big, disgusting challenge. I was pacing the hallway to do anything to keep myself from tossing my cookies. Being loopy, having pain, traveling on a plane and having several doctor visits in a day is not ideal. My Moffitt doctors were once again amazing and had the radiation team come and see me. The plan became to do 3 weeks of radiation in order to shrink the largest tumor which would take pressure off of my blood vessel, relieving some pain. After the tumor shrinks, then we can reevaluate what we need to do next. Here’s the tricky part- do I do treatment in Tampa and be away from home for 3 weeks? Or do I do radiation at Emory where I don’t feel as inclusively cared for but don’t have to be away from home?
The very next day we went to Emory to see what they could do about radiation options, but the earliest a radiologist could see me was 2 weeks out. 2 weeks?! Until I can just see the radiologist? Not get fitted and simulated for radiation but just to meet the radiologist…uhh, this does not sound ideal. I want to get off these meds ASAP, and the only way that can happen is if I start radiation. I feel like noting that I am still feeling like doo-doo at this point. No Bueno. I’m not driving because my meds are so intense and making it hard to focus on my hand in front of my face; I kept my community safe by not getting behind the wheel of a car. You’re welcome.
I got to see a Palliative Care doctor. A what?! Sister, look, I got a doctor for everything at this point. I mean, I didn’t even know what a Palliative Care doctor was. They take a look at all of your medications and figure out the best balance according to doses, side effects, time to take them, etc. Who knew that was a concentration?! Helpful though. He helped level out my medicine which made me go from a zombie to a normal person. Y’all, seriously, one day I was just trying to clean out my emails since I had 100+ sitting in my inbox, and I could not even focus my eyes on the email to press delete. I wasn’t trying to read them- just delete them and it took me only God knows how long. Exhausting. I was eager to feel normal again. And who the heck takes these drugs for fun?! I do not get it- who tries to feel this way on purpose?! It’s mind boggling! Anyways, this doctor was very helpful, so I’m thankful I got to see him! I am able to drive again, I feel less nauseous and I no longer feel like my eyes are rolling in the back of my head, which is (as you can imagine) improving my life.
In the meantime, I was told that my Emory doctors were working to get my appointment in radiology moved sooner, but we weren’t hearing back from them and only was able to leave messages with random desk clerks. It’s like a black vortex on where your messages go in that place. Trying to get in touch with a nurse, PA or doctor is impossible. Since Tampa was ready to see us and get us moving and Emory wasn’t showing any eagerness to pull the trigger, we made the decision to get treatment at Moffitt. (I know this update is dragging on and on, but this is what I get for waiting so darn long to update everyone. I’ll try to step up my joke game along the way to entertain you.)
Tampa! Here we come! Mom and I flew down on Tuesday, I did a CT scan and got fitted for radiation. You lay on this board with a hard-like purple beanbag that they mush all the way around you to form to your exact body and they suck all the air out, so it creates a hard mold of my sexy body. HA! There’s joke #1! Next, I got my tattoos. They literally give you a tiny dot of a real tattoo on both sides and one in the middle. This is so the radiation beams can line up in the exact same spot every time and at the intersection of the 3 beams will give the most concentration of radiation at the exact spot of the largest tumor. Amazing, huh? Umm…the tattoos hurt! Like, ouch! No joke- I am a wienie when it comes to that. My plans of connecting the dots with Thug Life across my abdomen were quickly dashed. (joke #2)
So, now I’m set. I’m ready for 3 weeks of radiation to zap this stupid tumor and get off my blood vessel to get me off some of these meds. I’m still in pain each day…some days are worse than others…some moments are worse than others…but I’m hanging. Mike will come with me for a week, then Mom and the kids will be with me for the last 2 weeks. I have had amazing friends of friends volunteer their homes to us, so we can stay close by for treatment. I’m ready- let’s do this! I’ll try to do a better job of sending updates. Maybe I’ll be feeling better and not have to be so quiet from here on out. I do want to say thank you though. This community is amazing; our friends and family have been so generous, kind and supportive. We are very appreciative for all the love and prayers.
Oh! And Happy cardiac-aversary to ME! One year ago, I suffered cardiac arrest, but a year later, here I am! So thankful! So, so thankful!