I am quite lucky because of all the help that we get. My friends and family ask how they can help me when I am having a bad day, and they have asked why it is bad or what can they do to help. To explain it, think of as if a normal person has 1000 units of energy. If you walk 10,000 steps you might use up 300 or 400 units of energy. If you are in reallt good shape it might be 200, but you still have a lot of energy in reserve and you rarely use up all of your energy in a day. My starting point is 100 units, but on most days I do not have access to all of that energy. If I walk over 2000 steps it is about 50 units of energy for me. But I only have 100% two days a week. The day before treatment and the day after treatment. The day before treatment it is the furthest from my previous treatment and the day after the effects of steroids keep me going. Then after 48hrs it drops down to 75% for 1 day, then 50% then it starts to climb again to 75%. The amount of energy that I have available is lower and I tend to use up all of my energy by the end of the day so it is important for me to properly allocate it all so I can get through my day. Every time I have a treatment day whether it is chemo or getting drained then I have 50% that day. What it feels like is tiredness that starts in your core, as you feel it in your bones. That is one of the side effects of this treatment though is the coldness within the bones. As the day proceeds and my energy gets depleted things get much more difficult. The good news though is that each cycle I am learning more and more on how to manage my energy levels. I need to choose where I want to expend my time and energy, which is why Mel is always concerned that I do too much. On days when I am not at 100% I will often still try and do more. The key is to also try and stay below the 2000 step count. This is what makes all of this difficult for me though and why it is a struggle mentally. I can not always do what I want because of limited energy. I know that I can deal with this for now and a couple of years, but if I only have a couple of good days a week and I struggle for 5, it is hard, especially when you do not have a goal that drives you daily. This is also why I think that it is difficult, because I can not operate the way that I want and my capacity changes daily. If I set plans and goals and do not achieve them it will annoy me. It is hard to do it all within 2 days.
This morning started in a wonderful manner, and as the day went on it was just more and more awesome. Mel and i tend to get into a lot of disagreements and fights on when it is appropriate to leave for things. My preference is to be early or not be late. Ever. Mel has a completely different approach and things thinks will be fine. I had wanted to be in the car at 8:15 at the latest and leaving the driveway. Mel sees it as getting ready to leave the house. We left at 8:23 and there was buses and traffic and we arrived at 8:31 or so. It was jam packed in registration and there were no seats. I had to stand around and wait and I eventually sat down and registered later than I would like. They happened to have all of the newer people who are not as experienced and some patients are slow and ask numerous questions or just like to tell their life stories. I eventually got in and it was packed in chemo as well. One of the nurses whom I enjoy chatting with was floating today and she came by to say hi and we chatted. My nurse went to put the needle in my port and she missed, which sucks because then it is a bit painful and then is tender. She then called the floating nurse to stick the needle in. What I noticed is the second time it is done, she did it with conviction and it is done very quickly. The first time it is slow and more deliberate but she did not hit the back of the port. When it is done with confidence it works well, every other time it is more painful. It is the same with getting lab needles or the needles for drainage, speed is superior and far less painful for me. As the appointment went on my nurse was busy with other patients and I had a lot of nurses who knew me come by to take care of me when the machine beeped. At the end of the day Mel had dropped by and my nurse had said it was only going to be another 2 minutes. After 15 minutes Mel noticed no beeping and asked one of the nurses who replied that the beeping was turned off. So I ended up being there an extra 30 minutes or so because of this. Tomorrow I am getting drained and having the permanent port put in so I can get drained more frequently. Tonight I will take my final bath. We are getting the steam shower soon and I do love it in there.
There are alot of chores and things to do and something that we need to do, but do. It do much of now is grocery shopping. Last year a couple of friends bought us instacart gift cards and at first I did not see how useful they would be. We used it in crappy weather when we needed groceries and we did not want to go out. Today we had to go grocery shopping. We had no milk and Mel insisted she needed some for her coffee. She was venting to me about all her stress so I did not think I should say that we had 35% whipping cream as well as ice cream. She could make an affogato or a really rich coffee drink. The memory of are you proud that you got a 93% in statistics stick in my head. As much as i like to cause trouble I try not to repeat the same mistake twice. I mentioned that we could use Instacart as we had money on it will and I think we might use it in the future for some orders when we can not go out. I was asking Mel when she wanted to go as it was 6:30 and I could feel my energy depleting and draining away. As the night progresses I get more tired and it is more difficult for me to do a lot of these tasks. This week we have had my parent and Mel’s parents make us food. Olivier has also asked for shakshuka so I bought some things to make that either on Friday or this weekend. I think that I am going to teach him how to make it as well to make my life a bit easier or just do it myself for short term gain as I might be tired.
The boys had a haircut yesterday and while driving them Olivier asked Xavier who asked whom out. Xavier said he did and we were both shocked. He said that she pretty much told him to and he knew she liked her. Boy should he learn from other guys who can clearly miss those signs. When I was younger I had a girl that I was friends with flat out ask me when I was going to ask her out. Spoiler alert. It took me 15 years to realize that she liked me and actually wanted to go on a date. Good thing he does not take after me in that regard. I am pretty sure I was oblivious to aor of things. Thinking about it, I have no clue how things with Mel and I worked out. She most certainly made the first move as I would not have been bright enough to know she was interested and would just think she is being friendly. As his girlfriend lives so far away I told him that this weekend if they wanted to hang out we can go get her and make arrangements for all of that. I texted her mom to see if they were coming into town and she said no, so I said that I could go get her. We will let the kids make arrangements to see what they want to do. Right now I feel great so I can drive out there. We will see how I feel over the weekend. The morning is generally good and it is zero effort driving. It also forces me out of the house. I will take my sleeping pill tonight and we will see what tomorrow brings.
QHM