When we checked out of the hospital on Monday, the Bone Marrow Transplant clinic set up lab draw appointments for every day this week. The schedule was a tad depressing, having to go back to LDS hospital every single day, but at least Eric was out of the hospital.
Tuesday Eric's blood work was so good (neutrophils up to .7) they decided we could skip coming to the hospital on Wednesday and just show up for the lab draw and check up on Thursday.
Today Eric's blood was so amazing (his neutrophils are up to 1!) the doctor decided we could cancel all of the daily lab draws and just come back next Wednesday for a lab draw and check up. What great news!
Unless something dramatic or exciting happens (and I hate drama and excitement!) I probably won't update the blog until after our appointment next Wednesday, so I thought I would just give a few insights into what our life is like now that we are home.
We go for a half hour walk each morning, and move much faster than we did before entering the hospital. Eric doesn't have to wear his hepa filter outdoors unless it is windy or he might encounter groups of people. So far, the only people outside during our walk times have been kids going to the junior high bus stop, so I don't think we have to worry too much about crowds of people at 7:00 a.m. Eric also has to be careful to avoid the sun. Exposure to more than minimal sunlight can cause Graft Versus Host Disease to develop, so Eric is wearing a cap with long flaps that hang down to cover his ears and back. So if you see a suspicious looking character with a weird mask and cap in our neighborhood, please don't call the police. It is just Eric out for a walk.
Food is not as exciting as it once was for Eric. Strong flavors and spicy food are unpleasant and will continue to be unpleasant until his taste buds get back to normal. Day to day Eric has noticed that things are less "off" than they used to be. Water only tastes mildly disgusting now, which makes it easier for Eric to get the amount of liquids he needs to protect his various organs that are stressed by either the chemo he had a month ago or the meds he is on now. He is already tired of me cheering him on to eat and drink more, but he is starting to slowly put on weight.
All of Eric's medications are now oral except for his daily dose of magnesium. Each afternoon I have to clean his central line, flush it out, and attach a softball sized plastic ball filled with magnesium to the central line. Four hours later the plastic ball has deflated as the magnesium has flowed into Eric's bloodstream through the central line. I then clean it, flush it, put in heparin (which keeps it open so it doesn't clot up) and cap it off. Great fun and pretty amazing!
After five weeks in a hospital room, Eric is enjoying having an entire house to wander through, his own recliner, a TV with more options, lots of books to read, food that doesn't have to ordered from a limited menu cafeteria 45 minutes before he wants it, easier access to the internet, and his own bed.
As far as visitors go, any adult that is healthy and hasn't been exposed to someone who isn't healthy can come visit. Just don't expect any hugs or handshakes. Half of our family room is Eric's half and the other half is for visitors, and we don't mix it up. Eric would love calls and visits because he has a lot more energy and focus than he did before his stem cell transplant. I would say he is back to about where he was in the middle of June.
What do we anticipate in the future? It will take a long time for Eric's body to recover from the cancer and the chemotherapy. Debbie's stem cells are working hard, but it will take many, many months before Eric's immune system is fully functioning. It will also be many, many months until he is back to full strength. From what we have heard and read, we will feel very fortunate if Eric's immune system and body are full strength in a year. We have been warned that it can take two to five years. And, the doctors warn of detours and side effects many recovering stem cell recipients experience. Of course, as we all know, Eric is very determined and will always try to be ahead of the curve. You just can't keep him down!
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