Van did a great job keeping everyone posted while I was in the hospital, but I wanted to point out some observations that may help other patients (from what I can recall).

TBI: I wasn’t one of those lucky patients that go through it without any complications. My cancer coach said her experience was a walk in the park with just a bit of fatigue. Unfortunately, I was so nauseous. Dexamethazone helped a lot and staying hydrated is really important. I don’t want to scare other patients, but radiation was the worst part of my conditioning especially when the machine breaks down on you 3 times. I think it would have helped if my sessions were 20 minutes, but unfortunately my sessions seemed to drag on forever.

Cytoxan: The stuff makes the front of your face burn and tingle. Thankfully the feeling goes away when the chemo stops. I think it only ran for like an hour or two.

Re-Birthday: I don’t remember much from the night before my transplant. I guess I asked Van to shave his beard. (I was really surprised when he obliged.) I remember even less of my transplant day. I was so numb from the Benadryl I got. All the nurses came in to sing Happy Birthday to me and I must have looked like one bratty girl because I don’t remember saying thank you. Manners go out the window when you’re drugged up. I’m bummed I couldn’t even sit up for a picture with Dr. Delaney and my nurse Christa. I’m always one to smile for the camera. So you can only imagine how out of it I was. I couldn’t even walk to the bathroom to pee so the nurse gave me a commode. I kept on telling my visiting friend not to look, but at that point, I really wouldn’t have cared if he had seen my tush.

Mucositis and Nutrition: Throat sores started the day after my transplant and got progressively worse until Day+6. Up until that day I had forced myself to have a couple of Ensures, Rice Krispies with milk, applesauce and ice cream. My nutritionist said that if I had 3 Ensures a day then I could be off IV nutrition. Food became such a dread and frustration for me because it was very painful to swallow. The rest of my mouth was totally tolerable (DO YOUR SALINE RINSES. IT REALLY HELPS!) On Day +6 I told my family that I was going to refuse any more food. That night I got my first bag of IV nutrition (TPN) and surprisingly by the next day I was able to enjoy a bit of thanksgiving food with my family. I guess I could have stayed off TPN, but I was so relieved when I made the decision that I wasn’t going to force myself to eat. It felt like a weight had been lifted off my chest, so I’m glad I made that choice. By Day+8 I was back to my normal diet of Ensures and cereal while still on the TPN. They took me off of it after 3 days.

Narcotics (fentanyl): When my mucositis was getting bad the nurses kept suggesting I go on a push pump so I could regulate my own dosage. I was very hesitant at first because for some strange reason I didn’t want the control of administering my own pain meds. I wanted someone else to look at me and say, “yes, you need some” or “no, wait a bit, it might go away.” The nurses kept talking to me and reassured me that all patients go on it and said I wouldn’t become addicted (hahahah they sound like drug dealers). On day+3 they hooked me up and told me I could push the button every 6 minutes. Whaaaat?!? EVERY SIX MINUTES? What do I look like a pill popper? The first couple of days I only pushed it like 4 times a day. Nurses were concerned that I wasn’t pushing it enough. They said that it might help with my throat pain which would help me eat. So one day I decided to push it 4 times in a row. That only made me nauseous. Doesn’t really make sense to treat the pain to try to eat only to get nauseous from the painkillers. Thankfully my throat healed quickly and they took me off the PCN plus did away with all of the “as needed” pain meds too.

UTI like symptoms: On Day+9 things were looking up. Minimal pain, no fever, etc. My PA even said I might get to go home on December 3rd (Day+13). Unfortunately just as I thought the worst was over with my mucositis, I developed UTI like symptoms (Van’s last post said it was an itch, but I’m going to be honest because I think it will help other female patients). It started as a strange tickle when I tinkled and then it got unbearably itchy for a day which made me beg for benadryl every 4 hours. I’m extremely sensitive to benadryl, but I think I developed an immunity to my old best friend because even after 25mg IV I didn’t really feel anything. By the third day, I was asking for narcotics (which unfortunately they had already taken all of my prescriptions away so I only got 0.5 mg of Fetanyl twice a night). For some reason it was much worse at night and for 4 days I stayed awake until 5am every night. My pain level was 6 all of the time and 8 at the end of my pee stream. I’ve never had a UTI or a yeast infection so I’ve never experienced such discomfort or pain in my life. It was far worse than my mouth mucositis. My PA Kevin said I shouldn’t treat this with narcotics and they would try their best to figure out what the real problem was. Many urine tests were run and everything came back negative. My doctor called for a consultation with a Gyn doctor. I think her exam made things worst. It was soooo painful. The third night’s urine sample detected blood which explained the exploding pain at the end of my pee stream because it hurts when blood runs through your urethra. Since everything else came back negative my PA concluded that this was basically mucositis down there and there was nothing they could do except prescribe Tucks pads and fetanyl (every two hours if I needed it) for the pain. He said this was a very common symptom for patients that have gone through chemo and radiation. He also said that women get vaginal pain and men get pain in their scrotum. I felt much better to hear that because for a few days I was seriously wishing I was a man. When I thought the pain was going to get much worse it actually got much better. I never did have to ask for fetanyl every two hours.

The main lesson I learned is that nothing lasts forever. On the days I thought things were never going to get better, immediately the next day things took a turn for the better. Unfortunately, when one thing went away, another issue developed. I am confident that as my baby stem cells settle in, fewer issues will arise and pain will be a far distance memory.

Well, that’s all I care to share for now. Time for bed.