JESUS CHRIST ON A CRUTCH!
Phil's dad says this when he is royally pissed off and G-damned frustrated and for any of you who know Jim, can't you just hear his cantankerous voice in your head? Although I don't know the origin of this particular jargon I was completely in touch with its general sentiment over this last 36 hours. What should have been a victory dance to celebrate the end of the first 4 days of chemo completely fell apart on us within minutes of driving away from the hospital.
Phil came home Saturday about 3 p.m., later than we had anticipated because it took so long for his last bag of chemo to run through. While we waited for those last drops to make their way through the IV lines, he talked about getting out into the world again, going with me to the pharmacy to pick up his prescriptions, and grabbing some frozen yogurt at The Yogurt Mill in El Cajon, our new favorite spot to indulge. After a bit of debate with the ol' ball and chain about what is appropriate behavior for a chemo patient upon discharge from the hospital we set off for our errands. Basically, nothing was going to keep this man from his strawberry frozen confection.
Well, the best laid plans of mice and men... No sooner had we reached the pharmacy parking lot then Phil looked at me and said "I'm not going in." He looked pale, puny, and he'd crumped (medical-ese for given out). He'd been having some neck pain over the last few hours but now it was getting worse and he just wanted to go straight home. I dropped off his scripts and we got him home and right in bed.
Over the next 4-5 hours when he should have been taking fluids and enjoying mild home cooked food he was barely able to take ice chips and only when they were placed in his mouth. He had zero appetite and was nauseated. The medication for the nausea was barely keeping it at bay and any movement was just making everything worse. It wasn't until late in the day that he would accept apple juice and then only a few sips. Thankfully his blood sugars did well throughout all this.
While in the hospital he was given HUGE amounts of IV fluids to prevent tumor lysis syndrome by flushing out all the killed cancer cells. Both to rid his body of all the nasty dead cancer cells but also to prevent his kidneys from having problems and his body from developing gouty deposits. Bottom line -- this guy needed to be pushing fluids and he wasn't. Oh and did I mention it was 95 degrees outside? By about 7 o'clock the nausea he'd been struggling with got the best of him and the vomiting began in earnest.
So, after a very long afternoon of encouraging oral hydration and several calls to the oncology service the decision was made to take him to the ED (emergency department) for evaluation, IV fluids, etc. Once there he was indeed given lots of fluids, had plenty of blood drawn (which was all essentially normal except to show he was dry) and he was given new meds to try for the nausea and vomiting. The first med (Zofran) helped a bit but not enough so he was given Phenergan. From there it all went to hell in a hand basket.
Phil is such a lucky guy that he got to develop what's called an extrapyramidal or dystonic reaction to the phenergan on top of the other world of hurt he was already in. In dystonic reactions muscles contract causing twisting and repetitive movements. The movements are involuntary and may affect a single muscle group or a group of muscles. In Phil's case, his legs were basically twitching and flopping all over and he just couldn't get any rest.
Guess what the treatment for dystonic reactions is? More medications!! First Benadryl which didn't help then Ativan which didn't help either. By then Dr. Kossman had called and we'd decided to admit him for further fluids and management. The good doctor would be rounding on him at o'dark-thirty the next morning and hopefully all would be resolved. By now I thought it was o'dark-thirty but silly me it was only 1 a.m.! So up to floor we went, 3 South, our new home away from home.
Once Phil was safely tucked in for the night but still kicking away to beat the band, I had to beg off. Tomorrow (today actually) was our kids first day of school and I HAD to be functioning for that. Phil and I had a brief conference regarding my need to get some sleep and he assured me in his drugged and fuzzy voice that he'd "give 'em hell" if they didn't treat him right. That was a very lonely walk down to the car but I knew I had to go. The kids. First day of school. Must sleep. Take care of myself. Breathe in. Breathe out.
Jump to today (Monday). Dr. Kossman called me as I was finishing dropping my kids to their classes. He told me his grandkids go to our elementary school too and it is #5 for test scores in the state -- how perfect. His wife is there dropping them off and he'll introduce us sometime. What a rare and wonderful individual in addition to being a top notch oncologist and physician. Anyway, Phil's labs are normal today, he's taking fluids by mouth and he looks better. He knows this is a challenging phase but that's normal for this stage of the process; a steep learning curve for everyone. There are still a lot of issues for us to iron out but we've learned a ton about what NOT to do again. No shit sherlock.
Phil still has nausea and significant neck pain and headache and will be having an MRI tomorrow to sort that out. He is staying another night in the hospital when he would rather be with his family. But Dr. Kossman was very matter of fact and told us what was going right. The war continues on and Phil is doing alright. His labs are good, his blood counts look good and he tolerated the chemo well in the hospital. His neck nodes are smaller which means the chemo is working. YES, this first battle is a bitch (my wording) but the bigger picture is encouraging. No rest for the weary.