and it has been until now that we have a different plan. Yes, I am still this side of the grass. I know when it has been too long when I start getting Messenger Messages. I am sorry for not blogging sooner, but honestly, I did not feel like it and why give anymore meh news. My news now is not so happy, but at least it is a plan and I am encouraged by it. As for things since September, a lot of it has been the boys and school. Cooking dinner, picking up groceries, doing chemo, staying home, but being relatively well. I took off a month at Christmas time and enjoyed tasting food and enjoying our cheese plates made with Metropolitan Market Cheese. I still shutter at the price.....half bag of cheese and fixings....$75. Then I go back for a top off and I don't even get a Met Paper Bag to show my worldliness, and it is $45. That is $110 dollars for cheese and a paper bag that I will use over and over again, until it is quite distasteful. Then, I went back to chemo and had a scan and we decided to add in the dreaded pump. I was on the pump before. It didn't make me so sick, but it is on for three days - but wait, I get pneumonia! Which is a double edge sword. One, I get so weak, I cannot carry my own travel oxygen machine. I have found there are some people that are good at carrying something attached to your face and others that are not. My Mom is not.......no lie, she grabs the machine and just starts walking around, I catch up like an ox being lead by a rope and then we checks to see if she locked the doors and turns around on a dime and yanks me back with her. Honestly, an ox would not put up with it. She carries my purse now. The good news is that the pneumonia got me sick enough to qualify for a Covid vaccine. You see Stage Four Cancer IN YOUR LUNGS doesn't qualify as sick enough. So, one shot down and one to go. I have slowly gotten better, but energy and lungs are slow to comply. The boys had to do all the cooking and the was more stressful than I thought it would be for them. Nolan went off on me one night and for like seven minutes told me how horrible I was and how stressed out he was and I was dying, and he is not happy and I could be a much better Mom and I even admit to be a bad Mom. Finally, I told him to stop. BTW - I always said my kids would need lots and lots of therapy.....maybe that I wasn't Mom of the Year, but seriously?!?!? Anyway, it ended well, I stopped being his parent for a bit. Grant was thrilled with that. But then soccer started - outdoor with masks - and all was well again. Funny how exercise and a bit of sunshine will cure almost anything.
So, what is the plan, well, since I had an adverse reaction to chemo when we started the pump, we went back to the drawing board. After talking to my legion of doctors, no one really wanted me or they thought something else may be better or they thought they had already done too much treatment and more would be detrimental. One doc though came up with PDT or Photo Dynamic Therapy. He seems to think that this will give me a little more relief and a longer time period of relief than other forms of treatment. I will probably have to go back into chemo after to clean up or continue, but that will be after scans. Of course, my insurance company is not only diggin' their heals in on PDT, but dropped the scan clinic that I just started to love. Oh well. Just another day in the world of chronic illness! So, what is PDT, well, it seemed to be a lot like Ghostbusters, the original. It is a three day process. On a Monday you go into Infusion just like you were going into chemo. They inject you with this dye. Imagine this is the green slime they shoot to show where the ghost is. Then on Wednesday, I go into surgery and they stick a laser down my throat and try and find the colored masses and laser them out. Imagine this is putting the ghost into the box. And then, quite frankly, I have no idea what happens on Friday because I was comparing the first two days to Ghostbusters, thinking that would be a good movie to watch again, but something does in fact happen on Friday that requires my attendence. Then we scan, and decided if we do it again or there is another coarse of action. Sooooooooo.....my oncologist said, "You know there is an outside chance that we would not have to do chemo after this." I can't even go there. This summer will mark three years of treatment of some sort with few breaks and no long term breaks. So, do I need anything. Thoughts and prayers especially the week of the 29th and probably more on Friday of that week since I have NO IDEA WHAT I AM DOING......but it may be in Ghostbusters.
A lot of people have asked me how my life changed with Covid. Well, honestly, I added a mask. Outside of that I have had to be more vigilant about other people. Early on in my disease people with a cold would cancel lunch with me and I got it. Now, I don't go to lunch because too many people's civil liberties are violated if you ask them to put on a mask.
Final thought: Fourteen years ago in May, I was told that I had one of the most deadliest cancers when found in late stages and then I was told I was Stage Four. I was 37. No family history. I didn't choose it. I prepared for treatment, got a port, and got childcare only to have my children go live with my Mom an Dad while I had the pump on because my kid's doc didn't know what chemicals I would be giving off. I still remember handing my Mom my four month old. I was isolated, sick, weening, and it hurt so much I couldn't move. I drank warm energy drinks (because cold felt like knives going down my throat) to keep up my body mass and I was on so many steroids I would not sleep and think of all the ways I could make the transition of my death easier on my kids and then as quick as those thoughts would leave how I could make the my life easy on them while I lived. If I was told back then, there was a vaccine that was new, past all the CDC test, that would give my kids back to me, and that may cure me or at least weaken my hardship, I would have run to it. You would too.
Happy Thursday,
Ang
