Good Morning Everyone,
Sorry for the delay in this. It has been a crazy past two days. Tuesday I built some furniture that we ordered for the bedroom and it completely KO'd me after I was finished. Yesterday I intended to post but I was at the hospital for about 4 hours longer than I expected (my 10am appt turned into a 3pm appt). After my appointment the LP bothered me way more than the past procedures.
Well today I thought I would post about something that never even crosses your mind when you are in the hospital, learning to live at home again. You see during induction therapy you live in the hospital for so long (6 weeks for me) you end up getting into routines. For instance, I titled this post Good Night Morning because that was an in-hospital routine I had. Every morning after my blood was taken at 5:30am I would go down to the quiet room to sleep with Amy and "Good Night Morning" is what I would say to her each morning as we fell asleep. Now that we are on the outside we are learning to make new routines with living at home again.
Once you are out of the hospital there is quite a learning curve in adjusting to life on the outside. It affects every aspect of your life. For instance, you have to plan ahead around meal times. In the hospital your food just arrives but on the outside you actually have to allow for cooking time. This is something that everyone has to deal with, but when you spend so long in the hospital it is something you totally forget about. Another big thing is your energy levels. You don't realize in the hospital that your energy levels and strength is dwindling each day you are there until you get outside the hospital and start realizing you don't have the strength to do the things you did before. I have learnt now that I can only plan one big thing a day because I know I need the rest time before and after. This big thing can be anything from going grocery shopping to even putting together a bed frame (something I grossly underestimated Tuesday afternoon :) )
Yesterday I learnt yet another outside the hospital lesson, patience. When you are in the hospital you don't really realize how long things take to happen because you have a bed there and lets face it you really you have no where else to go. But yesterday I realized just how long things can take. You see when you arrive for chemotherapy appointments, the drugs aren't waiting for you. They have to get mixed and prepared which takes time. This can turn a 10am appointment into a 2pm appointment very quickly (something I learnt yesterday :( )
Another thing is procedures affect you much differently as an outpatient than as an inpatient. Chemotherapy can be a tiring ordeal because there are more things that you do at home. When you are in the hospital your only responsibility is to go to the bathroom, record your outputs, and take your meds. At home there is so much more that you do, all of which can tire you out more. When combined with the chemo this can really hit you.
In addition, I learnt yesterday that outpatient lumbar punctures affect you a lot more as an outpatient. When you are in the hospital after the procedure is done you can spend the rest of the day lying in bed if you like. As an outpatient you are given 5 minutes to lay down afterwards and then you are told to leave. I have never had a headache from the lumbar puncture until yesterday(if anyone doesn't understand why the headaches occur let me know and I can elaborate more). I had an LP on my discharge day and it barely affected me. Yesterday's LP left me with a super sore back and on and off headache.
All in all I would never trade in living at home and doing outpatient therapy over inpatient. But adjusting to life on the outside has been a much bigger learning experience than I had ever anticipated.
I hope everyone has a wonderful Easter weekend! Make sure you all eat lots of chocolate, I need each of you to make up for the chocolate that I can't eat :)
Aaron
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