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!

 

It's been awhile

 I haven't felt like writing about cancer. I haven't felt like thinking about it.

I've had several of you that read this ask about updates, so I figure it's time.

I've had two doctor's appointments since I last wrote. The most recent being yesterday.

Still good news. My tumor markers are still going down.  I was surprised a bit as nothing to date has worked this well for this long.  I have scans coming up on Dec. 4, then we'll be able to see how I'm really doing.

So I've been on this chemo pill, Xeloda, since July when I had my extreme headaches.  I had to work up to a full dose because it made me super nauseous.  So I've been on a full dose for quite awhile and the side effects are hitting me pretty hard.

Not to complain, but I want to list everything, just for my memory and documentation

Yucky taste in my mouth

Hardly any flavor of foods.  Potatoes and white bread seem to be the best.

Nausea which is mostly dinner time, but off and on during the day. I have to time pills and food just right.

Hand and foot disease.  I haven't got to the point where the sores hurt and peel, but my hands are more than chapped. They're dry and red and hot.  I also have rashes on them and it goes up my forearms. My feet aren't as bad, they're extremely dry and the balls of my feet, at the top, get sensitive when I walk.  They suggest no barefeet.

Digestion issues: Sometimes extreme, sometimes mild, never just normal

Extreme fatigue...I get soo soo tired and weak.  I usually do too much during the day and by 4:00 I'm done.

Overall yuck- I just don't feel good most days.

Esplin told me that we should slowly back down...maybe instead of 3 in the morning and 3 in the evening, I should do that for the first several days and then switch to 2 and 3 and then maybe 2 and 2. So I'll try that, but I'm scared to not take the full dose.  He assures me that this is normal and it's fine. The goal is to get the longevity on this Chemo. If I have these severe side effects, I won't be able to have a good quality of life for long.

I'm happy that my tumor markers are still coming down.  I'm trying not to get too high of expectations, but remain positive at the same time. Balance

Expectations

 Last week I had scans again. Sometimes I am able to have scans and not be too anxious about it. This time was NOT one of those times. I had so much scanxiety! Probably because my PET scan last time showed growth of the tumors and I've been so off and on with my meds as I work up to a full dosage.

However, I hadn't realized that a great expectation of improvement had oozed into my brain.  After my previous appt. with Dr. Esplin, when my tumor marker had dropped so dramatically, I think I imagined those tumors just suffering and dying so very fast.  I wasn't even aware that I was expecting that.

So he had his nurse call me that afternoon. (If he calls, it's usually bad news, if nurses call, it's okay)  So she told me that there was a decrease in size of a few lymph nodes and my bones remained stable.

Good news right?  Apparently not, because I just began to cry. I was upset, I wanted more.  I think I had been expecting my miracle like I read about (Kristi there is NO sign of Cancer in your entire body and we can't explain it)  Then over the next few days, I was mad at myself for not being happy about good news.  

So I had my appt. with Esplin and he showed me my scans (I don't know how anyone can learn to read and understand those things) So there was one tumor in my mediastinal lymph nodes (Somewhere in my chest area between my lungs) that was no longer visible on the scans! Woohoo!  My liver lesions and some other lymph nodes were definitely smaller and my bones were just hanging out and stable.

This was a bit better than I thought. So I was glad. My tumor markers both also came down more than 100 points. So I went home and I didn't feel excited, I just felt kind of numb.

I realized that I was scared to celebrate. Scared of letting down my guard because I know so well how chemo just stops working and I have to switch to yet another drug and the number of treatments I have left are dwindling. 

So, I don't think I've mentioned this, but I have been talking with a social worker (therapist) at my oncologists building. Just over telehealth. He's been great.  I talked to him on the day after my appt. about how I was scared to be excited, scared to let go.  We've been talking a lot about the tug of war that I have in my mind about accepting the fact that I even have cancer.  I'm still tugging, I still haven't accepted it and that's okay. I'm getting closer as time goes on. He told me an analogy which in now way comes close to what I'm going through (his words) but I liked it.

He mentioned being on the best vacation I've ever been on and finding out that I get to stay an extra week.  How excited I'd be. Would I sit there and feel bad the whole week, thinking about that I was going to have to go home? No, I wouldn't want to waste my week that way, I'd enjoy and have fun.  

So, like me, I need to think of this month as an extra week to live. A vacation of sorts from the bad news. Even though, I know that at some point, the vacation will be over and the chemo will stop working, I don't want to waste this time worrying about it ending.

So, I think we all know that, deep down.  I know it, but I needed to be reminded that there's another way to look at it.  I'm trying.  It's easier said than done.  I haven't completely let go of the fear to celebrate, but I'm working on it.  I even sang in the car while driving the other day.  It's been a long time since I've done that.