October also felt like it flew by, filled with weekly lab work and near weekly doctor visits. I started my official medication, called Sprycel, on Sept 30. The first few days I had an upset stomach, followed by a week of pretty intense diarrhea after taking my pills. Since I take my meds at night, around dinner time, I was usually up most of the night in the bathroom. That definitely didn't help with my tiredness, but I would rather be up at night and nap during the day, than be in the bathroom all day- especially when I'm not at home.
October 6: My white count has dropped to 87! Seeing my number go down so much, after having watched it continually climb for almost a month, was so awesome! Unfortunately my hemoglobin has dropped to 9.8, which also contributes to the fatigue, but Dr H has assured me that this is normal and to keep taking my iron pills to help.
October 14: Met with Dr H again today, and he was SO EXCITED to tell me what my number was this week- 15!! I really had no idea what to expect with my new medication, but definitely did not expect such a fast drop in my number- I was completely floored! So far side effects have been very mild, the diarrhea has pretty much gone away, which is nice. I noticed a few racing heart and shortness of breath episodes during the first week of taking the Sprycel, so today also included another ECG and an Echo Cardiogram just to double check things, as well as a referral to a Cardiologist for a possible heart monitor. The ECG came back normal, and the Echo also looked good. All of my heart's valves are working like they should, and the chambers are all normal sized. The gal who did the scan needed to use some contrast to better see some angles, so an IV was needed. The first 2 girls that came in couldn't find a good spot, so they called in the Vascular Access team. I had never heard of them before, but what a game changer!! They use an ultrasound to assist when putting in an IV, and it was awesome! The gal was super quick, yet super gentle, and it didn't even leave a mark after! I bruise pretty easily, and IV's are the worst, but this was the best one ever. This week's hemoglobin was down again to 8.9, so Dr H has also ordered 3 iron infusions to help bring my iron back up. I've also got a referral to the dermatologist, since I've also developed a bumpy skin condition. It's not a rash, and doesn't itch or hurt, but it's still an annoying side effect that is slowly spreading across my body. Started on my back and upper arms, then jawline, forearms and legs.
October 19: Had my first iron infusion today. Overall it went well, but I'm happy I only have to do this 3 times. After the nurse tried to put the IV in and failed, she agreed to call the vascular access team. I thought for a second her and Cahl were going to get into it, since he told her at the beginning to call them, and she insisted she could probably get it, but ultimately the VAT came down and got it going. The infusion itself took about 30 minutes, but total time in the infusion center was about 2 hours.
October 24: This week I met with the Cardiologist. He was really awesome, and took his time listening and explaining things to me. He went over all my ECG and Echo results, and decided that since I hadn't had any additional heart episodes, and they hadn't followed any sort of pattern, he wanted to wait and keep an eye on me. If I have any additional episodes, they'll put a monitor on my heart for a week or so.
October 28: Big day today- weekly labs, meeting with Dr H, and my second infusion. I nearly fell out of my chair when he told me my white count this week was only 3!!! I'm (relatively) back to normal! My hemoglobin is up to 9.4, so the infusion worked as well. The nurse for my second infusion was awesome, and made sure to call the vascular access team right away, and put a flag in my chart for the future, letting everyone know to call the VAT every time I need an IV. I'm not sure what they are charging me for that service, but I will gladly pay for it, because it has made a huge difference! My poor arm today refused to cooperate, so after 2 failed attempts, they finally got my blood drawn from the back of my hand. I was also given the go- ahead to go through with my surgery, and that has been scheduled for Dec 1.
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