I received a comment on a post that desrves more than a simple reply.

Todd, your Mom is the type of person I have met in the Pump Room, that has brought a lump to my throat. They are inspiring with their “fight”, dignity and attitude. They are the ones that I try to emulate although I don’t think that I will ever make it to their level. At least I can try.

I am happy to hear that your son is going to get a chance to spend time with her this summer. Maybe she can show him the piles of powder on the North Van docks that they make Highlighter Pens from. ( Actually they are piles of sulphur, but a friend was adament that it was highlighter stuff. Ha!) Maybe she can share with him the majesty of the mountains and the tranquility of the sea. Maybe they can create a bond that they will share forever. I hope.

What you said is true. There is a strange responsibility you take on when you receive a terminal diagnosis. You have to be aware that those around you will want to help. Consequently, they expect that you are going to need their help, because your condition is so dire. You do and the help is appreciated beyond words. But, you can’t go out and try to be a superman or woman and do more than what is expected. People don’t respond to patients who don’t look sick. It just seems as though maybe you are pulling the wool over their eyes. Even though it takes you a day to recover. People want to feel like they are REALLY helping and as a result do extraordinary things. As the recipient you have to acknowledge that their help has assisted you in getting better. It has, so just be gracious and say thank you. You have to move on

I remember first getting the diagnosis that I may die long before I thought was my time. There was a calm that came over me. It was as though everything in the world had come in to crystal clear focus. I knew what was important and what was not. It was as though a huge weight has been lifted from my shoulders. I immediately felt closer to those around me and had a spiritual calm. I called it the “gift”. I often said that I wish others could get it with out the diagnosis part. So, yes Todd there is an upside to all this. It comes from having an open heart, a will to fight the good fight (wherever it takes you ) and the ability to notice miracles when they happen and recognize guardian angels when they appear.

Take care, and I’ll be thinking about your Mom.

SK

A month to go before I get the word as to whether I am responding to chemo or not.

There are three outcomes. The first is that I am not responding and well, as they say in the medical field “my options would be limited”. I am okay with that. You give it your best shot and you don’t come out a winner. That’s life. I would feel sorry for the nurses and doctors. I am sure they would be upset that I didn’t beat it and I hope they would know that I would have appreciated every tool and option they made available.

The second is I get word that I am doing well and we move on with treatment to kick this thing on its ass.

Then we come to door number three. The one where there is no specific answer one way or the other. They don’t think I am getting worse, but they are not sure that I am getting better. I am not sure how I am going to respond. Continue on with chemo and live life at 30% or 40% or go to option one and get the most of the time you have left. Hmmmm…

So, hoping for option one. Ooops number 2.

Bugs still won’t bite me and those that do die pretty quick. So I still have that going for me.

SK

The other day I really got angry. You go through all this crud and your doctors and nurses just keep throwing more stuff at you. I came in for my regular chemo injection. I arrived feeling quite “well”. The day before I might even say that I felt “good”. On my chart was a note saying that I needed a transfusion! Blood results showed that my hemaglobin had fallen below my 80 threshold. The nurse could see that I was getting agitated.
“How can I need a transfusion if I feel so good? I mean, whats the point!? You think you are doing better and then you come in here and get hammered with more bad news.”
She looked at me (they all “know” what I am like by now) and said, “I’m suprised you can even walk, much less go to work and say you feel good. Most people would be flat on their back. You are booked in tomorrow at ten.”
And that was that. I fumed some more and didn’t notice the burning chemo injection.
The next day I was back in the pump room. That is not he official name, but that is what it is. Each treatment chair has a pump next to it. A Plum II. Yup, even has a little purple plum logo. These little units sit there and pump whatever into your veins. Chemo, blood products or any other IV concoction. All make the same little noise, but each one has a little different cadence. If you are lucky you can use it to fall to sleep.
Looking down the line of chairs you can see everyone attached to their Plum II. Some are asleep, others reading and some talking to their husbands or wives. Nobody really talks to each other in the pump room. Most don’t want to know what is going on with anybody else. I do, but it is not polite to ask. Nor is it polite to eavesdrop. Yet when the next chair is only five feet away it is hard not to overhear the hushed remarks of a patient and nurse or other family member.
I felt sorry for Hazel. She must have been pushing eighty, and was hooked up to more chemo bags that could fit on an IV pole. I could tell that she was done. Her fight was gone and I didn’t blame her one iota. Yet, there was here daugther telling the nurse that the family was upset that Hazel had mentioned that she wanted to stop treatment. IMAGINE. The family was UPSET. The daughter-in-law was beside herself! Before you knew it a social worker had been summoned to talk to Hazel and suggest that maybe there were reasons she should keep going through chemo hell. Hazel wearily nodded and resigned herself to more of the same, pills, pumps and pain. All because her family wasn’t ready to say goodbye.
Most people in the pump room want to be invisible. You don’t want to attract attention and if you do, you politely end any conversation. It is not that people want to be rude. They just don’t want to hear anything that may put them behind. I learned a long time ago, not to tell people what I had and that I was doing well. You would notice someone else down the line stiffen. Obviously, they had the same thing, yet true or not, they were not doing as well as me. It is easy to take the wind out someone’s sails by being a little too optomistic. So everyone protects themselves by staying in their bubble.
A weird place the pump room. A great place to spend five hours getting a transfusion you don’t want to have. It wouldn’t be so bad if I got blood from say Brad Pitt. However, it seems that I keep getting it from an older set. Afterwards all I want to do is knit and yell at children to get off my lawn.

SK