Good evening and a very happy Friday to everyone! As always, I hope your lives are filled so many fun, exciting and loving memories. Memories are something I no longer take for granted. Each new one I make tends to enter my mind and soul in a new light. It is very refreshing to just laugh out loud, smile, and just lie down to do nothing but relax. We have the most amazing and loving support group. It doesn’t matter how frequently we hear from each of you. The amazing thing is you each find a void to fill in our hearts and minds at the right time. I promise if you have only written once, I remember the story you wrote, where I was, and how it made me smile. It is for these reasons I can still write to you from my hospital bed with a smile and say thank you. This week has been very hard and scary on us.
I ended the second portion of this new regimen on Wednesday, August 22. I went home feeling great. I was excited to play with my family, hear their laughs, and just be grateful for what I have been given. We are having so much fun enjoying each other, learning from each other, and just being us.
Unfortunately, life took a turn for the worse Friday into Saturday to me. My mouth began to hurt. My tongue began to hurt. I called my oncologist, and she said it probably was thrush, which is very common for persons in my situation. She prescribed me some oral antifungal to take, and stated it should go away soon. It did not!
The next day it was worse, much worse. I could barely open my mouth and chew. I could not talk. I cannot describe the pain in words. My mother had already come over to help. Since I physically could not speak, I had my mother call the oncologist. We were told to go to the ER right away. It was 3pm Sunday and we were on our way.
It didn’t end at thrush. I arrived in the ER with a fever (not good in my situation) and very low blood counts (both red and white). I was called anemic and neutropenic, and put into isolation. My white blood cells were so low I was very much at risk of getting an infection.
They connected to my port, started IV fluids, and ran tests and chest xrays. I was given antifungals and antibiotics through my port. They also added some pain medications. I was in bad shape and didn’t know what to expect. By Tuesday, I was worse than when I came in. My blood counts were still very low. My mouth, tongue, ears, and throat were in excruciating pain. Morphine did not even scratch the surface of the pain. We finally switched to a basal rate of Dilaudid with the option for me to request more through a machine. Fortunately, this dulled the excruciating to a slight roar.
Tuesday evening, I did not get any better symptom wise. My oral cavity did improve slightly. There was talk about doing a CT scan with contrast to have a clear cut idea of any abnormalities inside. Later on that day, my lung started to sound raspy even to the unaided ear. It was decided to do a CT scan with contrast because the x-ray did not show anything. I dislike getting scans. They always scare me now. They were looking for other things, but the scan will also show my tumors size, progression and any other locations. I broke down, but I had the best nurse to console me that day. She calmed me down to get my scan.
Wednesday brought no pain relief. I could not talk, chew, and could barely swallow. I can honestly say, to this point, I have never suffered so bad. You do not realize the amount of movement your tongue, oral cavatity, and throat do on a minute by minute basis. ANY movement, which hardly can be controlled, causes shooting pains through my mouth, tongue, throat and up both ears. I needed to get it under control and for something to work. I was still runnnig a slight fever too. We did receive the CT results back. Fortunately, the tumors had not spread and were right where we last saw them. Unfortunately, I had developed pneumonitis which is a step down from pneumonia. One more thing to worry and be scared about, especially in my condition.
Thursday, unfortunately, the pain was still present, but my mouth was still getting better infection wise. To add to the horror of our week, I started coughing up a small amount of blood. If any of you recall, coughing up blood is how my cancer first started back in 2009. This scared me to pieces. I cannot even describe what was going through my head. We didn’t know the origin of the blood, but my mind did not care. They re-read the scans and no new lesions were noted. We still did not know the origin of the blood though. We met with an infectious disease physician, pulmonologist, and cardiologist for varying reasons of my care. I was still having bad symptoms, but my oral cavity was improving. We switched antifungals and added some more antibacterials. The list of possible blood origins was long, but my disease was at the bottom of the list according to the doctors. Time will tell, but I hope they are correct!
On Thursday, I was still in a lot of severe pain, but my mouth was getting significantly better. Fortunately, my white blood cells began to rise from the Neupogen shots, and my body could start to help in the fight. My tongue, throat and ears were still very inflammed and sore. I still could only drink small amounts of yogurt and Ensure nutrition drinks to at least give my body something. Fortunately, my fever has gone away for now.
As for today and this blog, I am feeling much more alert and a lot less sore. My tongue is still very tender, but my throat and mouth are beginning to show signs of relief. I still cannot eat, but at least we are going in the right direction. Unfortunately, I coughed up a little more blood. According to everyone else, the blood could be from any number of my ailments over the week. There was a lot of inflammation, irritation, low platelets, and low white blood cells. For the time being, we will monitor it. If they are correct, it should go away after everything heals. If it gets worse, we will definitely do some scans.
I am hopefully going to be going home late tomorrow or sometime Sunday. I miss my house and family so much. To make matters worse, Andrea and Landon became sick early in the week so I was unable to see them for a few days. Life throws us all curveballs, even when we are down. The best we can do is look for the good everyday and the light at the end of the tunnel. Without love and support, you just beat yourself down like I did. I was depressed this week, and I cried a few times, but your messages and the people that surrounded me at the hospital all lifted my spirits!
In addition, I had a ton of help from my mother and the nursing staff at Sparrow. I cannot explain the importance of a good relationship between a patient and nurse; it is priceless. I have been through a lot in my life, and it is always very helpful to have competent, caring, compassionate, and intelligent people taking care of you when you need it most. I am not out of the hospital yet, but I know for a fact without their care and my mothers help, I would not be as well as I am today.
I apologize for keeping most in the dark. It all happened so quick, so fast, and for so long. It was the hardest week I have been through including the other rounds of chemo. It was hard because it was very unexpected, had nothing to do with trying to cure me, and I miss spending “normal” time with my family so very much. I cannot wait to step in my front door.
I am so grateful for all of your love and support for our family. I thank God for getting me through this week and letting me know everything is going to be alright, and to keep fighting. Our prayers are answered in his time, and we just have to be patient! It was a very tough lesson for me this week. I very much look forward to the Bowling Fundraiser on Sept 7, Golf Outing on Sept 8, and Golf Outing on Sept 16. If you haven’t committed, please come out and join our family. We would love to see you there. We want to show you how you make our family smile, how you brighten up our day, and how your support fills our life with hope and love. You have all been so great to our family. The journey is far from over, this was a small bump I believe, and we will fight this together. Have a safe and wonderful holiday weekend everyone! And be safe! Make it a great day. We love you all!