Posted on August 30, 2017
Hi everyone! Sorry for such a delay in posting an update. I wrote my update Thursday (8/17) but fell asleep before I posted it and then the next day was admitted into the hospital for 12 days. I am finally out of the hospital so here it is (it’s a pretty long update)… We will start with the good week…
I had another amazing week with my family! My sister, brother-in-law, and nephew came in town to visit and enjoy time together as a family. We got to play outside and even went for a boat ride! My sister cleaned out my closet for me, she didn’t know what she was getting in to, but a few hours and a couple ( ;) ) of trash bags full of donations later, it was like a whole new closet! I realize this probably doesn’t excite many of you but when you are stuck in your room for a week at a time, it’s nice not to have clutter. I got to play a lot with my boys, I even napped with Chase a few times and enjoyed having Reid sleep on me, nothing better than those snuggles! My niece (who is only 3) came over and sang the Overcomer song to me and it was the sweetest thing, made me tear up! I received lots of great cards, including one from my brother-in-law’s mother telling me she has a friend who was diagnosed at age 8 with Ewing’s Sarcoma in her knee and just celebrated her 60th birthday!! I also connected with a guy who beat Ewing’s Sarcoma in his abdomen back in 2014, he started his battle in 2012 and had to fight it twice but has been in remission for almost 3 years! These were all such great things to hear and really kept my fight attitude going! I even got a great card from a friend that said she hoped I was going to be in medical research journals for how fast we beat it! Put a big smile on my face! I sure do love the good week and look forward to it each round!
We started round 3 on Monday (8/7). Our doctor’s agreed to let us do the first 2 days outpatient and the last 3 in patient. We were so happy to only have to spend a couple nights in the hospital instead of the whole week! Day 1 was really easy, it took more time to get my port accessed and premeds than it did to get the Vincristine. My nurse pushed in the chemo drug in about 5 minutes and we were free to go! We had to be at Beach General at 1:00 for an ultrasound on my leg. I keep having a vein that gets really achey after chemo and my doctor thought it was best to do an ultrasound and verify there were no clots. Everything looked good and no clots were found! I was able to come home and spend more time with my family, granted I laid on the couch for most of it but it was WAY better than be stuck in the hospital away from them. Day 2 took a little longer because I had to receive premeds and fluids with the Cytoxan. Again, super thankful we got to come home after a few hours and spend more time with my family. We were set to check in to the hospital early Wednesday morning, the nurse manager (who is amazing!) was going to let us come in early Wednesday instead of Tuesday night to hold the bed. Unfortunately, my orders got messed up and instead of going to Beach General for the Adriamycin, I was sent to Sentara Princess Anne. We don’t know any of the nurses there and were unable to check in Wednesday morning, we had to come in Tuesday night. Stephen put Chase to bed and then we headed off to the hospital. We checked in around 9:30pm and settled in for the night. I was barely able to sleep when we were at home due to the steroid in the premeds again, so the hospital gave me an Ambien to see if that would help and make me a little less of an insomniac. I managed to get a few more hours in, but still had to be woken up for vital checks and labs. The Adriamycin started around 11am the next morning. Wednesday was pretty easy, we would walk 4 laps around the hospital wing every 2 hours to keep me up and moving and I was feeling pretty good! Thursday got harder, we were only up every 4 hours to walk, but as my dad said, I was still moving a lot faster than everyone not doing it! By Friday, I was wiped out, we still managed to get up and move, but it was at a very slow pace and I was aching all over. For some reason, every time I get chemo my ears ache really badly, so I was also taking Flonase to see if it would help, it did! I had one day that they were pounding but it’s been much better since that day. We were discharged around 12:00 and headed over to VOA for my Neulasta injector. I was way less anxious this time but still needed Stephen and my nurse to distract me while the injector was beeping at me. We headed home, I said hi to the boys and then crawled into bed. I stayed in bed most of Saturday and Sunday, feeling pretty lousy but I did manage to walk a mile each day on the treadmill, go me! On Monday, we headed to VOA for labs. We were so excited to hear that my WBC was at 13.5, I wasn’t neutropenic!! This potentially meant I was going to get 2 weeks with my kids, instead of 1. However, I told Stephen I was pretty skeptical that my WBC was still that high but he told me to just enjoy it! My doctor and nurse decided they wanted to see me back on Wednesday because my platelets were low and they wanted to keep an eye on them. We came home from the doctor and I played (and napped) with the kids. Monday seemed like it was going to be the turnaround day, I was already feeling a lot better. But then Tuesday hit, and I was aching again and really fatigued. My heart was pounding anytime I got up and walked around. I told Stephen I was pretty sure my hemoglobin had dropped more. On Wednesday, we headed back to VOA and found out my WBC had dropped to .4, I was neutropenic, so much for those 2 weeks! My platelets had dropped even lower and my hemoglobin was sitting right above the transfusion level. This was the lowest my RBC had gotten since I started treatment. The fatigue I thought I was feeling the first 2 rounds was nothing compared to this. It was a chore to get up and walk the 10 feet to my bathroom and by the time I got back in the bed my body was weak and my heart was racing. Thursday was more of the same, still not able to do much other than lay in bed. On Thursday, I also noticed a new side effect, mouth sores. After each round, my gums feel pretty dry and my jaw hurts to open wide but that was the worst of it. This time my mouth feels the same but now my throat seems to have actually developed the sores. It’s painful to even swallow water. My doctor prescribed some medicine to help, but so far it seems to numb my mouth but doesn’t do too much for my throat. My doctor called on Friday to check on me and I told her I was feeling even more fatigued, now walking to the bathroom and back made me feel like I might pass out. She decided to have me come in for more labs to make sure my counts hadn’t dropped even lower. Unfortunately, they had dropped and I now needed blood transfusions. My doctor said the best thing to do was to go to the emergency room and have them do the transfusions, it would be the fastest.
We headed over to Sentara Princess Anne and were admitted for the transfusions, however, when they did my vitals my temperature was 100.2. I knew with my counts as low as they were, they were going to admit me with a neutropenic fever, not just for transfusions. So we checked ourselves out of the ER and headed to Beach General, if I was going to be stuck in the hospital, it was going to be with the nurses that I love. We checked in to Beach General and now my temp was 99.2, even though it wasn’t a fever they told me they were going to admit me because of how low my WBC was (.2). They started my blood transfusion (I ended up getting 4 units of blood) and then transferred me up to the oncology floor. Once my first unit of blood was done, they started the broad spectrum antibiotics to fend off any potential infections that may have been causing the increase in my temperature. On Saturday, I woke up to an upset stomach but within a couple of hours I was in excruciating pain. I was curled up in the fetal position in my hospital bed with tears running down my face. The pain felt worse than labor contractions. They sent me for a CT scan to see what was going on in my abdomen. We had the results in about 20 minutes; I had a high grade full bowel obstruction in my small intestine. My small intestine had knotted itself together. They started giving me pretty intense pain medicine to keep the pain under control but not much was helping. I started vomiting and they cut me off from all liquids and food around 11am on Saturday (8/19). They told me they were going to insert a NG tube and that it was going to be really painful. They take a tube that is about 3 feet long and insert it into your nose, past your septum and then down your throat into your stomach. The tube stays on constant suction to decompress your stomach and remove all of the bile to keep everything off of the obstruction. The hope is that it will allow your obstruction to fix itself without surgery. Two of my nurses came in with the tube and told me they didn’t want me to even look at them because they didn’t want me to remember that they were the ones who placed the tube. You have to be awake for the procedure because you have to be able to follow commands, once the tube passes your septum you have to chug water to try to swallow the tube down and not gag or vomit. Unfortunately, the tube wouldn’t advance past my septum and I got a nasty nose bleed that lasted for about 2 hours or so. I had already received one bag of platelets but they decided I needed two more before trying again. The nurses went through shift change and now I had two different nurses coming in to try, both of which still didn’t want to be associated with placing the tube. We tried again and failed again. I asked if there was a pediatric NG tube we could try and thankfully the ER had some and was able to send them up to try. The third time was the charm. They taped the tube to my nose and told me to be really careful, they are easy to pull out and I didn’t want to go through having another one put in. For the next 4 days, we waited, hoping to see that some of the stomach bile would start passing through my system instead of being suctioned out, but no such luck. On Wednesday (8/23), they performed a contrast test to see if anything was getting through. They injected barium into my NG tube to get it into my stomach and took a series of x rays over a 4 hour time frame, the results showed I still had a full blockage and not much of anything was trickling through. The surgeons came to see me and told me I would have surgery on Friday to remove the blockage, we were hopeful it was scar tissue that had caused the problem and that I wouldn’t need another resection. On Friday (8/25), I headed into surgery (I attached a pretty flattering picture of right before I went back to the operating room). They had to cut me down the same incision from my last surgery but the incision is only 28 staples longs (vs 54 on the previous surgery), so about half the size (maybe 6 inches or so). The surgery went really well and I was out in about 45 minutes. My scar tissue from my previous surgery had formed 4 bands that wrapped around my small intestine causing it to knot itself. The surgeon was able to cut/burn the scar tissue and my intestine unknotted itself. This was great news! It meant we would only have to delay chemo 2 weeks instead of 4 (had I had a resection). After surgery, I still wasn’t allowed to eat or drink anything until my bowels starting functioning again. On Sunday (8/27), they decided to start TPN (Total Parenteral Nutrition) through my port to give me the nutrition I was missing, I still wasn’t allowed to eat or drink, it had now been 8 days of nothing. But finally, on Monday (8/28) my bowels started to wake up but before I could eat or drink anything, we had to turn the suction off on my NG tube for 6 hours and see if I got nauseous and also what the output would be when the suction was turned back on. And yes, I had the tube hanging out of my nose for over a week! Thankfully, I passed the test with flying colors and was allowed to have the tube removed!! Also, I was allowed to take my first sips of water in 9 days and try some broth. One of my nurses knew I was craving a snow cone, so she bought a snow cone maker and brought it in just for me (they really are amazing people!). Things progressed quickly after that and now (8/30) we are being discharged from the hospital with no diet restrictions! I am pretty bummed I had to have another surgery and upset I can’t lift Reid again for another 6 weeks, but I am thankful that the surgery went as well as it did. I had to delay chemo too, but maybe my body needed a couple more weeks to recover and this was the way to get it. I’ve learned with cancer you have to be flexible because it constantly throws curveballs at you (kind of like life in general). You can get upset but you can’t hang out there, you have to pick yourself up and move forward, just keep swimming.
I saved the best for last… THE CANCER IS SHRINKING!! The CT scan showed that my largest lesion on my liver had shrunk from 4.8cm to 1.8cm and that the free floating tumors had also shrunk. All the more reason we hate to delay chemo, but hopefully 2 weeks won’t give the cancer much time to grow back. We have to keep hitting it hard while it is responding so well because it does tend to become resistant to chemo. We should still have a PET scan sometime soon, just not sure when due to the delay and surgery. Hopefully, that will show even more shrinkage! All of the prayers are working, please keep praying!!
Again, thank you so much for all the continued prayers, cards, comments, texts, visits, meals, fight songs (I have a pretty good playlist going, but feel free to keep sending them!), etc. You all have no idea how much even the social media comments mean to me, they helped me get through the harder days in the hospital after I posted the Round 3 sign. All of it, no matter how small it seems to you, means the world to us. We are so thankful and so appreciative!