As much as I loved coming home from the hospital, it sucked to not have nurses taking care of me and keeping my pain pills on a schedule and helping me to the bathroom. Also, by the time I came home, all of the milk of magnesia and laxatives had started taking effect and gave me the opposite problem: exploding diarrhea! That lasted for a few days.
Going to the bathroom was one of my biggest challenges. My walker didn’t fit width-wise next to the bed, so I would have it sideways next to the bed. To get out of the bedroom, I scooched my way sideways with the walker to get to the end of the bed, turned it 180 degrees to the right, then had to wade through a snake’s nest of oxygen tubing to get to the door, open the door and then go forward a foot, then scooch sideways to get into the bathroom because the door didn’t accommodate the width of the walker either. Add to this exploding diarrhea and a bladder infection from the catheterization. I had to go often and with urgency! Now make it nighttime, and I’m navigating all of that in the dark. I had to wake C up in the middle of the night for the first couple of nights to help me get to the bathroom, if I could even make it in time. If I didn’t, I had to ask for help to change my underwear because I couldn’t dress myself yet. Also, if I went too fast on my journey, I had trouble breathing. The process of getting to the bathroom was sooo hard for the first week or two!
I looked forward to getting into our new house so much while I was using my walker. In our new house, the bathroom would be attached to our bedroom and a straight-shot from my side of the bed. C and I both daydreamed about it. We closed on the house on April 26th. I was still using oxygen 24 hours a day and had progressed to crutches. I could walk independently a little. Took my first few steps the next week, exactly 4 weeks after surgery. We moved over Mother’s Day weekend, on May 10th because C’s family could help us. Thank goodness!!! It also gave me a little more time to get stronger, though I was still only able to direct the packing, moving, and unpacking. No lifting for me.
A lot of my co-workers and both my bosses visited while I was at home recovering before the move. I got cards in the mail, food delivered weekly for the first month, and one of them brought me ice cream from my favorite ice cream shop. I got fun presents in the mail that made me laugh. The food helped out though. C and I appreciated not having to think about dinner planning.
I started working from home part-time the week after we moved into our new house. I also did radiation to my hip and femur that week midday. It was tricky. Lots of driving. And I still needed to nap at least once a day. I remember wondering if I would be able to work four hours a day when I first started. Aside from the first week, it was almost too easy. I was off oxygen during the day as of May 10. Three weeks later, I was ready to go back and work 30-40 hours a week, and work half my hours at home. I’ve worked full-time at work since July. It took about a month to build my endurance.
As far as treatment, I’ve had a doctor’s visit every 4 weeks until this month. Every visit involves blood lab work, then a visit with the oncologist, then a bone shot to regenerate some bone growth. The first visit was on April 12. After a week of being on my treatment pill, my cancer antigen number had fallen significantly. It started at 1700. On May 10th, the number had decreased by half. I wanted to cry some happy tears. C’s sister had accompanied me on that visit. As a nurse, she nerded out over everything. This antigen falling trend continued every month. When I went in August on the 9th, my number was 4. Four. That’s right. Four. A normal person’s range is between 0 and 3. I had an MRI and CT scan in June, and those showed that except for in my bones, the tumors in my body have shrunk by more than half, and some of them completely went away. Treatment is working! I’m feeling great! Aside from some fatigue and lingering pain, I seem normal.
I had surgery on my spine on July 30th to stabilize two vertebrae which were at risk for collapse because the cancer had eaten away at too much of the bone, and I had fractures. Still have fractures there and in other bones. The doctors did ablation and kyphoplasty. Ablation heats up the bone to kill any remaining cancer cells, and kyphoplasty is bone cement. Walking feels better, more stable, but healing from this procedure has taken a lot longer than I expected. I still can’t lift anything without it causing terrible pain. I have to take pills to manage it around the clock at the moment, and the pain wakes me up at night. I want to do stuff, like go for walks, strengthen my legs, do some pushups, and I have to do mostly nothing. I know it will get better. I just need to give myself time to heal. The best news from that surgery was that my bones are finally starting to grow back.
Next oncology visit is on September 20th with scans. Also, I can put on my own socks now. I had to ask for help for months with that. I could do everything else by myself by June when I went back to work.