Posted on July 6, 2017
Hi everyone! Today marks 2 weeks post the start of chemo. So let’s recap…
Last time we left off after my first day of chemo. The second day of chemo was a little more difficult but not too bad. Cytoxan is really rough on your kidneys and bladder so you have to pumped up with fluids beforehand and afterwards. They infuse the fluids so quickly that it can cause a dramatic increase in your blood pressure and severe headaches, lucky for me I experienced both. The nurses were amazing and got everything under control pretty quickly, I was even able to walk down to the hospital garden about 2 hours after the treatment was done and was feeling pretty good. The third and fourth day of chemo were rougher, the drug of choice was Adriamycin. I learned from a good friend that they nicknamed this drug the “red devil” but then changed it’s name to the “red angel” because it is doing good things, just hard on the body. The Adriamycin took 48 continuous hours to be administered, which meant I wasn’t allowed out of the oncology unit but could walk the halls. The Vincristine and Cytoxan were starting to produce side effects and the Adriamycin was packing a punch too. It’s pretty safe to say I didn’t feel like doing anything, lots of body aches/pains and headache and overall feeling rundown. The Adriamycin finished on Monday afternoon and they gave me the choice to leave or stay another night, we chose to go home. I was so ready to get out of the hospital! Maybe some of you already know this but I learned that when you are diagnosed with cancer your body is much more likely to develop blood clots, combine that with laying in a hospital bed for prolonged amounts of time and your risk goes up even higher. To combat the blood clot risk, they give shots of Heparin (anticoagulant drug) in your stomach every 8 hours. I’ll let you do the math on how many shots I received after being in the hospital for 5 days. My stomach was bruised and we were ready to go!
We were so thankful to be home. One of the hardest parts of all of this is being away from our boys. Reid is too young to understand what is going on but Chase is always asking where we are and why we are leaving him again and it breaks our heart every single time. This time going home still felt wonderful but it was also bittersweet for me, I knew I wouldn’t be allowed near the boys due to my compromised immune system. Chase got to come in and see me with a kid mask on a couple of times, but I could only see Reid through a camera. My sister set up a baby monitor in the living room so I could see the boys play from my bedroom (although I have to admit I feel kind of creepy when I use it, but it’s fun to talk to and scare people!). We could have put a mask on Reid but because of how young he is (and also has a compromised/undeveloped immune system) there is a big risk that I could transfer the chemo drugs to him… which I know sounds crazy but for at least 48 hours after (and during) chemo, everything that comes out of my body is a biohazard (saliva, sweat, urine, basically any bodily fluid). That means even if I was to sweat and touch him, it could transfer. I have to be careful around anyone during this time but the risk was too great for Reid.
On Tuesday we had to go to VOA to get my Neulasta shot (stimulates white blood cell production). That shot had quite the bite going in! It is also known to cause deep bone aches because it is stimulating the bone marrow, thankfully for me the Claritin they tell you take worked for the most part. We knew at this point that I was probably neutropenic. I had to basically be in isolation to because I wouldn't be able to fight any germs. My diet also had to change, no raw fruits or veggies, no deli meat, no food from restaurants and a few other stipulations (can’t say I am a big fan of this diet!). The first few days of being home were kind of rough, still experiencing the pains and rundown feeling but thankfully my nausea was pretty well controlled. Unfortunately, while we were in the hospital I noticed my throat was a little sore, we thought it was a side effect of the chemo drying me out. Turns out it was my body trying to fight a cold. On day 4 of being home, the cold took over, I didn’t have the white blood cells to fight it any longer. It felt like my body had been hit by a freight train (or I imagine what the man cold feels like ;) ). On Saturday, I spiked a fever of 100.5, anything above 100.4 you are supposed to go the emergency room immediately. We did as instructed and checked into the ER. They ran blood tests, urinalysis, chest x ray, and a CT scan (all came back good) and then sent off some of my blood for cultures. After about 7 hours in the ER they admitted me back to the oncology floor. My white blood cell count (WBC) was at 0.3, the normal range is between 4 and 10, I was considered severely neutropenic. At this point your body can’t fight anything, the smallest infection could kill you so we knew were in the right place. They started me on broad spectrum antibiotics to knock out whatever was causing the infection. The antibiotics were run through my IV continuously, these are pretty hard hitting antibiotics, nothing like you would take in pill form, so now my stomach was getting pretty upset but again we managed. On Sunday my fever was gone and my WBC was up to 0.4, not much of a jump but still something to celebrate. On Monday, we were at 0.5, Tuesday was 1.2, and by Wednesday we were up to 4! We hoped this meant we could go home, but my platelets decided to steadily decline and now they wanted to monitor me for one more day to make sure I wouldn’t need a transfusion. My hair had started shedding really heavily by Wednesday and I knew it was time to cut it (not sure how much longer I have before we will need to shave it all). My sister in law brought her stylist to the hospital for me, she even work a mask while cutting my hair. She was wonderful and at the end wouldn’t even let me pay her, she actually thanked me for letting her be a part of it. I was floored again, so much love and generosity from people I don’t even know. One of my nurses even came in with a gift bag afterwards, she went and got me two scarves. I cannot say enough good things about the nurses at VB General, they make each stay so much more bearable and constantly give me hope and keep me positive. No one ever wants to be in this situation but they are so good, sometimes I even forget I have cancer and they always tell me they pray for me and know I can beat this and to keep up the positive attitude. The nurses are a true Godsend.
Today, my WBC was up to 7 and my platelets were on their way back up too! We are currently sitting and waiting to be discharged so we can go home! I get to be a normal citizen for a whole week before the next round starts!! We are so thankful and are going to cherish every minute!
We got huge news while we were in the hospital. Our doctor at Hopkins had a final diagnosis for us…. Ewing Sarcoma. Stephen and I got the news around 1am and were celebrating in our hospital room. Again, don’t google it, but Ewings Sarcoma has a much better prognosis and we get to stay on the aggressive chemo but not the insanely aggressive chemo associated with DSCRT (that chemo has drugs that my oncologist in VB had never even heard of).
I will say this every time but again thank you! Thank you for the prayers, meals, donations, texts, social media comments (I read them all and appreciate them), letters, childcare (my mom, sister, brother-in-law, mother-in-law, dad, aunts, uncles, friends and so many more take such good care of our babies and show them so much love), playdates for Chase, Riley’s vacation (my brother and “sister-in-law” take such good care of her - if you didn’t know, you can’t be around pets when you are neutropenic), haircuts, foot rubs/back rubs (my mom and sister are amazing at this), house cleaning, lawn care/pool care (brother in laws, nephews, nieces, father-in-law, dad, neighbors, and uncles help out so much), house maintenance (my dad and his friends kick this one out of the park!), chemo blanket (my aunt hit this out of the park) and so much more. We truly are so blessed and so thankful!
Also, tomorrow (Friday 7/7) at 7pm, my parent’s church is coming to my house to pray with me. If anyone is interested, you are more than welcome to join. If you need our address, text Stephen, me or anyone in our family.