Mel's Redefined Life

5/30/17 William saw the pediatrician today. The visit was supposed to be a simple physical for camp. He is going to Camp Kesem on the 11 th , which is a camp for kids with parents with cancer. I’m hoping it helps him a lot emotionally. He had a simple finger prick amount of blood drawn at the appointment. His stress level was through the roof. He screamed bloody murder and it took 3 nurses to get the blood from his finger, 2 to hold him and 1 to get the blood. This small blood draw showed his white blood counts elevated. He also went from 90 th percentile in growth to 60 th percentile in growth. Add that to his frequent nose bleeds (literally daily) and my having cancer young and the genetic disposition of my family to this cancer, and I’m concerned. I don’t want to say the word I’m worrying about… not my baby. He has to go to the hospital this week for bloodwork. Unfortunately, that means he has to be restrained because of how he is with needles. L My poor baby. ...

Cancer is no joke... and chemo may be worse than cancer. I finished the AC part of chemo... 4 rounds of the "red devil"... and this is what it has left me with... First... my memories.... I'm losing my memory and with it, my sanity, sense of self, and all shreds of happiness. I can't remember what things are called, what my zip code is, what day it is... I forget what happened a few days ago, and I never know if something that happened... was it yesterday? or the day before? or was it last week? I forgot how to get in the front door of my own home and pounded on the door in a fit of panic. My emotions... I cry every day. I yell. I scream. I shake and tremble. I feel everything I was and the person I was slipping away, bit by bit. (don't worry, I'm okay, just being very raw and honest here) The nightmares... I've been waking up from very vivid, horrifying nightmares. Regularly. So much that I have refused to go to sleep until about 2am the l...

May 25, 2017 Another ER visit today. I spent the night overnight with a temp that hit 103, sweating, tossing, miserable, and the vomiting started early in the morning. I ended up in the ER. My throat was painful and swollen and my head was pounding, throbbing, with such immense pain that I could barely see. The ER gave me fluids, ran another infectious work-up round of tests, did a cat scan on my head, gave me tylenol, then morphine, then antibiotics. I felt so miserable. Again.

My heart and mind are so heavy. I finished the 4 prescribed rounds of the "red devil" chemo... Adriamycin and Cytoxin. I've been in bed since Thursday... today is Monday.... I barely know what day it is any more. In less than 2 weeks I am supposed to being Step #2 which includes Taxol, Herceptin and Perjeta The side effects of Taxol include: Low blood counts... white and red blood cells and platelets temporarily decrease, putting me at increased risk for infection, anemia and/or bleeding Hair loss (full body) Arthralgias and myalgias, pain in the joints and muscles Peripheral neuropathy (numbness and tingling of the hands and feet) Nausea and vomiting Diarrhea Mouth sores Hypersensitivity reaction - fever, facial flushing, chills, shortness of breath, or hives after Taxol is given Swelling of the feet or ankles (edema). Decreased/damaged liver function Low blood pressure Nail changes (discoloration of nail beds, nails falling off The side effects of ...

It's chemo day today. I'm sitting, waiting, nerves driving me nuts.

Monday, May 8, was a fun day. I got up with a fever... 100.5... in a normal world, with a normal body, that fever is not much to worry about. For chemo patients, anything above 100.4 is considered an emergency. So, off to the ER we went... I've never been sent straight to a room until now. A chemo patient cannot be placed in a waiting room because of the risk of exposure to lots of other sicknesses... My fever was 101.5 in the ER. They did a full septic workup - bloodwork, urine, chest xray, flu and strep swabs - everything possible. The workup was very thorough. Everything came up negative for any specific infection, but my WBC count was 2.3. Definitely low. I spent the whole week in bed, fighting fever and a sore throat. It was a rough week.

I keep waking up with really bad headaches early in the morning hours, around 4 or 5am. This morning it was 4 and the pain was so bad. I tried a cold wet washcloth over my eyes and forehead... it didn't work. I'm only allowed to take Tylenol (Acetaminophen) ... no ibuprofen, naproxen, aspirin or other OTC pain relief which a normal person not undergoing chemotherapy may take for a headache. I couldn't find the tylenol. When I woke up again around 7am, the pain was still intense. To add to it, the nerve pain started in my neck and back, like spasms of stabbing episodes. It's horrible and it's been happening since I started chemo. I don't know if it's the muscles or the nerves, but it hurts like hell. So breakfast this morning included narcotic pain relief and valium. Nothing like waking up in such intense pain that the first thing you grab for is a pill bottle. :'( I'm also experiencing a few other side effects that totally suck. For one, my nose ...

I'm up and about today, starting to feel a little better. Chemo Cycle 3, Day 6. Day 7 is when blood counts are the lowest and I'm at my weakest - or so they say. I'm kind of kicking butt over here! I have spurts of energy here and there and use my energy to spend time with my children. I wish I had more of both - time AND energy - but don't we all? My little monkey fell asleep in my lap the other night and I had to grab a selfie. To be so young, innocent, not knowing that the big world around can be so harsh. All he knows is that mommy lost her hair and has "ouchies" ... and it's all he needs to know! At the ripe old age of 3, his comprehension doesn't go much beyond a new hair style and mommy is home all the time. It's Derby Week in Louisville. I see the press and hear whispers, but I'm not part of the buzz this year. Last year I was so excited to watch it and I wanted so badly to attend some of the festivals... but those festivals are ...