Progression

So I had to go to my radiation oncologist to look at my MRI,

There's doctor McCallister. And he's the main guy, he's there most of the time and he's not my favorite, I guess, he knows his stuff but he doesn't explain things and he doesn't. That's not the best bedside manner. But there's another guy, Dr. Blair who pretty much is retired but he will come in like every other Friday or something like that. 

Luckily I had him and I love him and he literally sits for an hour with you and explains everything and he knows what he knows a stuff and he just shows it all to me and it's really great. 

But the bad news is, is that my MRI showed tons of progression in my sternum. It is pretty much all cancer. The radiologist used the word obliterating a couple times, that it had a obliterated, certain bones and Nerve walls and everything. And that they think it's growing into different areas of my spinal fluid. Then he told me that there's nothing else he can do for me. I asked why they can't radiate again. And he explained that in the first place, the radiation that they gave me didn't work. So why do another one that wouldn't work. Also, I guess they have discovered how much radiation different parts of the body can tolerate. 

And my sternum and the area where my sciatic is, it can't handle another dose. And if we were to do it again, all the things in that area would be damaged and not work well including nerves, my ability to walk, things like that. However, I feel like that's happening anyways. I might get to a point soon where I can't walk and I'm really, really scared. 

Anyway, there's nothing more he can do for me and that area. 

So he said he's gonna make an appointment with a neurosurgeon. but he doesn't think that there's anything they can do, but maybe they have some new stuff that he's unaware of that can help me.

So maybe he will have something that can help. 

He also just said, the only other way is systemically, which means chemo. And obviously, now that I'm having other progression, I'm going to have to switch chemo. 

And that scares me because I might be sick again and I lose my hair. Might not be able to travel, all sorts of things like that. So, I'm waiting now to hear from Esplin about switching. He might just wait until next Monday, which is my appointment, but I've been and a lot of pain and I've been in a really dark place. 

I have felt more like death is coming sooner. But I think, I may be just being dramatic, which I hope and I may thinking the worst because I'm in so much pain, but I feel like the cancer is growing so quickly and it's gonna take over my body soon. 

In addition the other radiation they gave me on my back or neck around for C5 down to, or totally worked in the front. But, of course, just since we saw the radiation oncologist, it has now been hurting really bad again.

And now it's hurting all day and it hurts really, really bad and sometimes I can't move very well and it hurts so bad, I cry. So I feel like that has grown back again and I feel like already not radiation but I feel like cancer is taking over everywhere. 

So I'm having a hard time emotionally thinking about leaving Kevin with the girls. And I feel so guilty because it's going to add so much stress onto him. He's already hurting and he's already sick. I'm worried about to girls and their mental health and how they're gonna do without a mother. 

I know I missed my mom tremendously, but I was 48 when she died.

My little Kinli. Will she remember me? Maybe a bit, but I don't think she'll have really good. Strong memories as much as obviously, Maili. In each of them, their brains are just not developed and I'm just really worried. 

I know that I'm gonna be okay when I die and I know that I possibly will be able to help and the Lord will hopefully allow me to do that. 

I just worry so much for them.

Pain, Radiation, Repeat

It's been a really long time since I written everything or anything. I keep thinking about writing and then it's just too much to catch up on, so I don't have time to do all of that. So then I don't do it. And then the longer it goes, the more

I have to write past couple of months have been really hard for me. 

So this starts where I left off with radiation on my S2 for my sciatic nerve.

I think it started filling a little bit better when my 10 rounds were up. When I went for my 6 week follow up I didn't feel really that much change. And in fact, I felt like it was starting to get worse.

Around the same time, I went to bed one night and when I laid down, I had this really bad pain across my back and I couldn't lay on my back. So I didn't think much about it until it happened the next night only it got worse and worse and worse. Then I noticed that my right arm, the inside of my arm felt ever so slightly numb. And in addition to that, I couldn't push a small spray bottle of water or anything. I couldn't push it down with my right index finger and I would look at it and push as hard as I could and nothing happen. I was the strangest sensation. 

In addition to that, I had started getting electricity through the left side of my chest into my left arm, and so that was happening right around the time I was supposed to go for my six week follow up for my sciatic nerve and I had told him about it and he said, yeah, let's look at your scans and sure enough, there is a tumor between my T2 and T3 vertebrae that was pushing on the nerve canal. And if you Google what does T2 T3 control or what it's in charge of, it's pretty much is your whole upper body, including your back just between my shoulder blades. 

So, I had radiation on my neck. And this one was really weird because it's up in your neck. They radiated from C5 - T4 because you need to leave some good margins around the area.

They really can't have you move anything at all because it's so precise. And so they make this plastic mask, and honestly I felt like Michael from Friday the 13th. it was this plastic hockey mask kind of thing and they made it by putting this sheet of plastic into hot water and then they quickly put it on my face. 

It didn't hurt, it felt like the warm towels at a spa or something, but they quickly mold it to your face. They cut some ice slits and some nose slits.  But you have to wear that every time you do radiation. So they went in and did 10 rounds of radiation. And after the first one or two, all the other symptoms were gone except for the pain in my back. And that was awesome. And I haven't felt those since. but I have felt continued pain in my back, especially at night.

Between my back and my sciatic nerve, the pain has been so bad that I've had to go to the emergency room for additional pain killers. And I just feel like an idiot, the doctors are so awesome and they assure me that all these ads that you hear and see and read about opioids, do not apply to me and I am not THAT patient. It doesn't apply to me because I have cancer. 

Anyway, I started getting a little bit higher levels of drugs. I have since gone to a pain doctor. Dr. Hoelzer and I've been in there three times trying to adjust my meds. And I still haven't got to a place where I feel like it's helping. It helps enough to take the edge off but I'm in pain all day long. 

It never goes away. The worst part is I can't lay down on my back in bed. Not only does it hurt my back, but my sciatic nerve just goes crazy and I have pain down both of my thighs. Which leads me to the newest thing that I have felt over the past two or three weeks. (I can't get a break)

But I started feeling numbness in my left bum cheek and down my left thigh.

So today I had an MRI and I forgot to take more painkillers and I should have realized that I would be laying down on my back, but I forgot how long an MRI can take and this took well over an hour, and I laid down on my back and they lifted my knees, a little under a pillow as usual, but the pain was excruciating. So much so, that I had to push the panic button. He asked me if I wanted to schedule another day and I asked him if I could maybe lay on my stomach or something and the answer was no. 

And he asked again, do you want to come back another day and reschedule? And I said, I can't. I have to get this fixed. I'm supposed to see the radiation doctor again tomorrow, and so he has to be able to look at this MRI. So I have to do it. 

So, I went back in and I cried while he finished my scan. And I am praying for help to handle the pain, And I'm so thankful. I don't know who it was but somebody came and took a little bit of my pain away and helped me zone out and going to a weird sleep place and I was able to finish the MRI. So, very grateful for that miracle

So this is been a really rough couple of months for me. Pain is very new to me. Chronic pain.

I've had pain before but not like this. Oh, I totally forgot when you radiate your neck. You radiate your esophagus. My esophagus was burned so badly that It hurt too bad to swallow. I've never felt anything like it and it was for like that for one to two weeks and it started, getting better. 

I would say I'm 95% better that way. I still can't swallow normal size bites.