September

To  sum up the month, I'd pretty much just say pain.

So, we're still dealing with my pain in my sciatic nerve.  As I have mentioned before, my sternum is completely filled with cancer.  I did meet with a neurosurgeon and he believes that he can go in and scrape away some tumor from the spinal cord, enough to relieve the pressure.

However, he can't remove all of the tumor, because it is so big.  It has has replaced so much of my actual bone, that they can't take all of it or I will have too big of a hole and nothing to support that area. 

So, I was all set to have surgery last week, but of course, insurance caused issues to push it back in another week, which meant that I wouldn't have time enough to recover before Our Hawaii trip.  Did I mention we're going to Hawaii?  So there's this place called Aly's wish and we got put on the list a couple of years ago, soon after my diagnosis and we are getting a free trip to Hawaii from them.
They are sending my entire family. paying for flights, hotel and an actual luau. We'll be gone for a week. They're paying for five days but we're going to add in 2 more nights for a full week.

It's really awesome, but also really stressful because the girls have already missed so much school because of getting colds at the beginning of the year and then going to Florida for Dianne's daughter's wedding.  So now they're going to miss four more days of school and it's all in the same term.

But whatcha going to do? So, we're leaving October 14th and we'll be back, October 22nd. And I'm hoping to have a great time. 

So because of that, however, my surgery is postponed until October 29th. I'm just hoping I don't have too much pain in Hawaii to not be able to enjoy or be on so many drugs that I don't even remember very well.
So along with that, I am meeting with the neurosurgeon a few days before, and he's going to look at my upper back. I've got some tingling going on that's taking over my whole right. Arm shoulder blade and my port. And I'm also experiencing some weakness. So, the doctor was hoping that getting some Surgery up in that area could relieve it, cause he's worried about it becoming paralized......so we'll see.

To be honest, I'm scared to death of surgery on my back.  I'm scared of something going wrong, I'm scared of dying on the table, and scared of not recovering well,.  I'm scared of the pain. So I'm going to be getting some more pain to relieve some other pain.

And I hope it works.

In the meantime, I've just been dealing with pain and not doing much else. I'm on extremely high doses of opioid, in several different forms. I'm on fentanyl patches, which they say are more potent than cocaine. I'm on Percocet. Oxycodone really. And I'm on Gabapentin. And yet my pain is still there.

I have to take these drugs, every three and a half hours because I can't last the whole four hours. They make me fall asleep all the time. And I'm also really grateful for them because they dull the pain enough most of the time that I am able to get some things done.

I don't really feel like I'm living and I know my girls are concerned.  I've also been losing my hair again. Due to the Adryamicin, aka red devil chemo. And it's been coming out really hard and really fast.

I'm probably going to get a wig this time around. Kinlni has expressed how my lack of hair really bothers her.  So, I'm hoping that a wig might help her feel better, who knows? Maybe it will help me feel better too.

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.

Pain

 Well, had my appointment with Esplin. markers still went down. Just a couple points each, but it's still in the right direction. However, my pain was getting worse and worse.  He ordered me an MRI of that area and sure enough....

A tumor has eroded through my bone in my sacrum and is encapsulating my sciatic nerve.  Not sure what encapsulating means in this situation, but man it hurts.  Pain killers don't even help anymore.

So I met with the radiation oncologist. Dr McAllister.  I had to go several times and do CT's and x-rays to get everything lined up while they  did "planning"  Placing images over images, marking sharpie marks and stickers all over my abdomen, etc. Then last Friday, I had my first radiation.

Now that machine is the biggest I've seen yet.  I call her Big Bertha.  I lay down, (pants around my knees) The techs line me up and I lay there listening to 80's music and within 5 minutes I'm done. Don't feel a thing.

So now I am exactly half way through. I will get a total of 10 treatments and I go everyday except the weekends.

I asked the dr. how fast I could start feeling relief and he said anywhere from the first zap to 3 months. Everybody is different.

I guess, in my mind, I like to imagine this laser beam coming down and this big explosion of my tumor.  That would be cool, but no,  it's a slow death and depending on the strength of the tumor and the kind, etc. it may be 3 months.  

I have been praying for relief sooner rather than later.  I'm so drugged up, in pain and so so tired.

I'm so thankful for my ward (church congregation)  that are bringing in meals and building garden boxes for me.  People are so incredibly good.

I feel bad sometimes, because I have offers to take my kids to school, etc.  but Kinli has been having a rough time....she is worried about me a lot, so I try to make things as normal as possible for her.

sigh   have I mentioned how stupid cancer is?

2 year cancerversary

Last Saturday/Sunday marked 2 years since I found out that I have stage 4 metastatic breast cancer.

I'm glad that I feel better today, emotionally, than I did then.  I for sure thought I would be dead by now. I pray I can still continue with this miacle of being stable. 

So it's been about a month since  I've written.

The steroids didn't help my sciatic pain at all. I called, and the nurse just said to ice it and heating pad and pain killers etc.   It has been so so bad. Sometimes I can't sleep and I don't want to be on these narcotics  either.  I'll talk to him again on Monday.

So, every now and then, I have been speaking with a counselor about some of my feelings and coping with this disease and the realities of dying.

Recently, I've been really frustrated with my mental state.  People call it Chemo brain or a fog. Neurologists call chemo brain similar to severe brain trauma. Either way, it's frustrating.  I've always been and "on top of it" person.  I rarely lost things like my keys. I remembered details and appointments.  Maybe some of it comes with age, but I feel so dumb.  

I can't remember words even 2 seconds after I just said them.  I forget to call people back. I lose things. Can't repeat things people tell me. Maybe this is what dementia feels like?

I feel like people think I must be really flakey.  I told my therapist this and he said "but people that know you, know you have cancer"  This is true, but people don't know that cancer and the drugs can cause all of these things.  My hair is growing back and I look normal, so I must be feeling normal or thinking normal and I'm not.

I've always been a very social person and now I just don't try.

I'd like to get a job of sorts, but don't feel like I can apply for a traditional job because tomorrow my treatments might change. Cause tomorrow I may be in too much pain to go out or just not feeling well.  I want to be able to be reliable.

These are the things that have been filling my brain lately.  Also my mom.  I still think that I haven't been able to truly mourn appropriately. Everything is cancer cancer cancer.  I really miss her. I wish so much that she could give me a hug and tell me everything will be okay.  That my kids are going to be okay, that Kevin is going to be okay.  The kind of comfort that only your mom can give.

I miss her so much.

most recent scans

 

The day of my February appointment with Dr, Esplin, I started having some discomfort in my right leg. It was so minor at the time that I didn't say anything to him. The last 4 weeks have been pretty painful as something is pinching my sciatic nerve.  So I feel pain in my rear, the back of my thigh, the back of my calf and then my toes are kind of numb and tingling. Sometimes it has kept me awake at night and I finally gave in and started taking the stronger pain killers, as Tylenol or Ibuprofen (which I'm not really supposed to take) help.  I was sure something was growing.  I had my 3 month scans of Feb. 22.  Both CT and bone scans showed everything is stable to decreased. No new lesions and none growing and a couple are even gone. Happy about that!

I talked with him about my pain and he looked and sure enough, there is a tumor right near there, but from what he can see on the scan, it's not in the way of the canal where my nerves are going through. So, we're hoping it's inflammation. So I'm on day 4 of 6 days of a steroid. So far, it isn't helping.   I really do not want to get radiation.  But, that is probably what is next if I continue in pain.

This morning, I got my first covid-19 shot. So far, so good.

Also, my tumor markers are down again. NOt by a lot, but still going in the right direction.

Confusion

 I know it's been so long since I've written. I've been in a whirlwind of confusion an honestly, I just haven't been able to get myself to write. I do better mentally when I keep myself distracted, so sometimes writing about it makes me focus too much on it. Although, writing about it seems to be a form of therapy as well.

Here's an update as of my last post.

December 4th I had bone and CT scans.  They came back mostly positive.... He saw some calcification on my liver mets which means it's dying. bones were stable, no new mets and overall looking fairly good.

A few weeks later, I woke in the night with pain in my right side (liver) It was bad enough to keep me awake. The next night it happened again and when I turned, I had a sharp stabbing pain there,

I called the the Doc, but, of course, it was the week of Christmas and he was out for the week. His "fill-in" had me get an ultrasound on my liver.  So a few days later, Christmas day, I saw the report on my patient portal and it said I had a new lesion in my left lobe that wasn't seen clearly on the prior CT scan and it seemed my right lobe tumor had grown significantly, but the radiologist and later my Doc. said it's hard to say because of the different machines used. CT vs. ultrasound.  So I just went in a downward spiral emotionally. My thoughts were all over the place. Xeloda had stopped working, nothing is going to work, you're going to die this year. Just really negative and hard as I tried, I couldn't seem to help it. I did all the things I know to make myself come out of the hole, but I just couldn't. Finally, a priesthood blessing has helped the most.

So this is where all the confusion comes in.  After looking at my ultrasound, etc. on Jan. 4, he wanted to see my tumor marker numbers.  When we looked at it, one had come down a bit and one had come up a bit. So he's thinking that Xeloda is working for everything except liver, so wait until Feb. and see the numbers and then we'd possibly do radiation on the liver.  So this has been my state of mind for 3 weeks.

2 weeks ago, along with the discomfort in my right side, I started getting new pains. twinges, discomfort in my left abdomen. So that is NOT liver related.  Now my mind started going to "Oh it's spreading to my spleen or pancreas and it's spreading all over my body super fast ( I had a friend that died within weeks of finding she had cancer, so I get scared it's going soooo fast)

So my appointment is still a week away, but this morning, needing some peace of mind, I called the nurse....which I had to call anyway to check on my insurance and order labs, etc.  I told her of the new pain and if it's something he would want to see me earlier for or ???????

So she looked at my scans and my bloodwork and said both my markers were down considerably.

So in confusion, I just checked my patient portal and it does show both of them down and then the graph that you can see kind of skips over the last numbers as if they're not accurate.

So, yeah I don't get it and I don't know what's going on in my abdomen, but I feel a bit better mentally seeing the new marker numbers but confused because it's different than what we talked about with him 3 weeks ago.

So, here I am reporting the details and where I'm at.  I still have side effects, although Esplin lowered my dosage. Things are just a little bit better in all the areas. Still annoying and I hate all the side effects, but just a tad bit more tolerable.

Hopefully, I'll be good and update after my appointment next week.

p.s. my hair is filling in nicely. I look like a boy, but that's progress!