Speaking of reactions, we have had a few of those around here this week. I am not talking about anger this time. Rather, from the day of Mark’s last, small dose of steroid, his body began to react to his targeted drug. Right away he had an unusual red line line across his forehead as though he had just been wearing an old fashioned swim cap that was too tight. It came and went – over the week a lot of redness came and went, mostly on his head and ears.

He also developed hand/foot syndrome but this is a normal side effect. His hands were fine but that night he also complained that his heel hurt. In the morning there were painful red sores and the next day he had a heart shaped sore that I think I will use as my photo because it is kind of appealing, unlike most of the other symptoms. One of our kids also took a twice daily chemotherapy treatment for three years. A handful of these drugs causes hand/foot syndrome. Three years of red and very painful hands and feet!

Last Sunday marked the end of the week and we had the feet well under control using moisturizer. We had assumed that the redness and bumps happening around the head and face were also a part of this (could it be hand/foot/head syndrome if you are bald?) but they continued to get worse. Right before bed Mark broke out in such a crazy rash – all over his body. I won’t post photos but… wow! I made sure that there was no facial swelling and that he was still breathing fine. Wanting to avoid the night staff, we waited until first thing in the morning to send photos to our doctor. Within five minutes they were calling us asking about swelling and breathing. They told us to stop taking the meds but we had already figured this out. The plan was to let the reaction settle down and then begin again on a lower dose.

We were already scheduled for routine labs but when they came back no one was happy. Again on Wednesday we took labs and still no one was happy. They had put their heads together and they gave us three possible scenarios for what was happening and yet Mark didn’t quite fit into any of them. We would need to stay off the medicine for awhile.

“Like until next Monday?” we inquired.

Well no – it could be awhile longer than that. Mark was none too happy to pause the fight. Was there something else he should be taking? No! We had to understand that his body simply cannot handle the battle for the time being. Sometimes you need to rest and regroup.

Sunday – Well, things are looking up though we know it is temporary. We asked the doctors about steroids because even at the lowest dose Mark was doing quite well. They agreed and he began another round of steroids on Friday afternoon. Wow! By the morning he jumped at the chance to eat French toast when it was offered and even said he had been anticipating through the night! After weeks of no appetite it is good to see him eating again.

We had spent the day Friday waiting for lab results so that we knew if we were staying home or being admitted to the hospital. They were stable so we stayed home and will have labs drawn again on Tuesday morning with the hope that we can remain at home again. Our nurse practitioner is working on pre-approval for an alternative medication (I’m not sure what happened to having only two possibilities).

We are in a waiting pattern but this is what I see… I see a husband who is suddenly eating and has enough energy to walk around the block… so I told him I want to see him eating all he can and walking whenever possible so that he has some meat on his bones and perhaps the hint of a muscle or two before we fall over the next ledge. We have a window of opportunity and I plan to take advantage.