Started the day off with another routine infusion of steroids. Shortly afterward our internet went down. Nooooo! We lost our connection to the outside world. Seems that we have become totally dependent on the internet. Oh well, it gives us a good excuse to do a few other things. Some people went to the Red Square, St. Basil Cathedral, and the Kremlin. Others stayed inside and rested. I decided to take a walk to a new market to continue to prepare for isolation. Dr. Fedorenko says that getting some exercise after infusions are a good idea. Steroids make a person overly excited, moving a lot, talking a lot, and just being funny (or annoying maybe?) LOL
A steroid induced conversation would look something like this. Totally fictitious conversation, just illustrating what it would sound like.
Patient 1: inhales and says very quickly without taking another breath
IsurelikethehospitalhereandthepeoplethedoctorisrightontimeforeverythingthatIneedandIreallyappreciateitIwishwecouldgettastierfoodthoughIwonderifitwillsnowtommorowWhatisyouredss? (inhales)
Patient 2 inhales and says very quickly without taking another breath
IknowwhatyoumeanDidIevertellyouaboutthetimemyopticneuritisflairedupduringtheworldcuplastyearIwassomadbutitreallydidntmatterbecausewewonSureamgettinghungryIsthereanythingtoeataroundhereDoesanyonehavefoodinthefridge? (inhales)
Patient 3 inhales and jumps in by saying very quickly
IlikefoodtooDidyouknowthatwehavethreekidsages161824theyknowhowtoeatfoodlikecrazyIveneverseenanythinglikeitinmylifeIdontknowhowpeoplecaneatthatmuchfoodandnotbesuperfatHasanyonenoticedthatthereishardlyanyonehearoverweightIwonderifitisbecausetheyeatsuchsmallportionsorisitbecausethefoodissoblandDoesanyonehavefoodintheirroomseriously?
Just imagine if someone was watching a comedy ping pong match. Looking left then right and back to left all while laughing at the entertaining ping pong match. Well that really was what my wife was doing during our steroid induced conversation. She was thoroughly enjoying herself and we were completely unaware. LOL
Our group seems to get along quite well. Tonight several of us ventured out in the city and went to a restaurant for dinner and a couple of drinks. We ate good food, had more steroid induced laughs, unwound from our medical treatment, all in good fun. I think these pictures will illustrate just that,
Tomorrow we will receive another steroid infusion in the morning. But things will change very rapidly from then on.Treatment will get a little more intense. Shortly after the infusion we will have the neck catheters installed to prepare for the stem cell harvesting. A couple of days after the harvesting is when we start the chemotherapy. Then will be isolation, so you can see that the treatment is ramping up. So far I do not see anyone getting anxious about what we are doing,
Would like to point out an observation that I have. This is only my observation so it may not be 100% accurate. But what I am seeing in our group is a very determined group of individuals that are very well informed of the treatment were are receiving. We all seem resolute in our decision to receive HSCT with the intent to maintain our quality of life and by some off chance recover some of our deficits. Knowledge is power and I feel this group has the knowledge to make a very good educated decision. I. really proud of each and every one of them. I like to think of them as my stem cell brothers and sisters.
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