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!

 

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.

Learning the lessons

 I said at the beginning of this trial that I didn't want to miss the lessons this disease would teach me.

I'm sometimes looking and trying to figure out what I'm learning or have learned. Mostly, I still see a lot of things I need to learn.

This morning I was listening to the "All In" podcast. I don't usually listen to it, but I saw that it was about grief and I wanted to listen. S. Michael Wilcox was the guest and I loved what he had to say.  He lost his wife to Brain Cancer 10 years ago and he wrote a couple of books about. it.

A couple of things stood out to me. Hopefully, I can articulate well.

I was thinking, last week, about how when I think of my mom, I think of how much I miss her, how much I love her and I don't think of the negative things. Either negative things with our relationship, or things about her that made me mad, etc.

Brother Wilcox talked about how when someone dies, you go through their things and cleanse out the stuff, keeping things that are special to you.  When we lose someone, we tend to do the same thing. In our relationships, we tend to notice the mote in people's eyes. In Matt 7:3 The Savior basically asks, why are you even looking at the mote? We answer, because it's there, I can see it. and he asks why are you looking at it in the first place?

I think that's what happens with the loss of people we love.  We tend to forget the bad and think of the good and that's a good thing. Our ability to love is increased because we're not focusing on the bad.  I really liked that thought and I also like the idea of grieving our past lives.  I often grieve the old me. My old normal and I think that helps me realize how good my life was and I have a better appreciation of it. It also made me think of Kevin after I'm gone.  He never outwardly criticizes me, but he's human, he must have several complaints about me. Hopefully, when I'm gone, he'll remember the good only and his love for me will grow even more. "Grief is love's shadow. If we didn't love, we wouldn't grieve."

In talking about grief, any kind. There's no roadmap on how long it's supposed to take to be done grieving.  I think of grieving my mom, of grieving my BC life. BC= Before Cancer.  The one thing to remember is our God is a God of Happy Endings.

Another thing he pointed out was how the Savior said "Do I have to go through this? (remove this cup)   and then he said "this is my purpose"  This is what I came to do.

When I'm questioning why I have to go through this, I have to remember that this is my purpose. This is the way I'm going to learn what my Father in Heaven wants me to learn. This is why I came.. Endurance is what God asks of us but it doesn't have to be a bad thing to endure or to wait for the blessings or the answers.

Sit on the good for a bit

 A quick catch up of my status.  I had my August appt. and one of my tumor markers had come down 170 points!  That's never happened to me before. The other one was pretty much the same. So that was good news and I just want to sit on that for the month.

Since then I've been doing pretty good. I am all over the place as to my dosage of Xeloda.  I take a week off and by the end of that week, I feel pretty good. More energy, no nausea, etc.  Then I get it into my system a bit and it's all back. Esplin is fine with me doing different each day as long as I'm trying to work my way up to full dosage.

I also am very achy. Mostly my lower half. Waist to ankles.  Ladies in my facebook group say it's the Zometa or the Faslodex.  Kevin has been massaging my back, hips and legs every single night! What a great man I've got.

I have scans next week CT and bone. It's early because of my liver lesion growth last time.

I'll see Esplin the week after scans.

Balancing act

Today is the last day of July!  I can hardly believe it.

I was going absolutely stir crazy, so we packed up the kids,, got the last VRBO available and went to Lava Hot Springs for 3 nights.  Lava has a lot of good memories for me. Family reunions, swimming, floating the river and the hot pots of course.  We did all of it and the girls loved it!

Last Thursday night, I was nauseated....like I usually am on this Xeloda, and I threw up and it happened again! The head pain!  Although, it was less severe, kind of like the first time it happened to me.So I was in bed and by the next morning it was much better with just a little residual left over.

Of course, it was Pioneer Day and Esplin wasn't in the office.  I wasn't sure if it happening again, after it hasn't happened means that it's not the Piqray, but instead the Xeloda.  However, I've heaved since then and haven't had the head trauma so I just don't know.

Esplin wanted me to very gradually re-start my Xeloda. My full dose is suppoesed to be 3 in the morning and 3 at night.  That last time I had the head thing I had just had my first day of 2 and 2. So I've dropped down to 1 in the morning and 2 at night.  I'm trying to find the right balance between how and what to eat how many minutes before I take my chemo and also how to time my anti-nausea pill.  I am doing okay with it, but just when I think I have it figured out I will get so nauseous and just can't hold it in.

I will go get my labs next week and then see Esplin the following Tuesday. That way we'll have my tumor markers and know what we should do from here on out.  Half a dose of chemo doesn't seem good enough to me, but I just can't seem to tolerate more.

The Relief Society President asked if she could have the sisters in my ward fast for me this Sunday.  I realized just how far I've come with accepting help.  I welcomed that offer immediately.

I just can't do this alone. I need those prayers. I need those fasts.  I need those people. And I'm so very thankful for them. I don't think you really can understand until you've had people fasting and praying for you, how much it really does help and lift me.  There have been some times that I have been so down and scared and discouraged and I knew that the only thing keeping me going was the faith and prayers of others.

What a fabulous blessing prayer and people have always been in my life.  Isn't that a wonderful part of the plan?

I thought I was dying

It's been so long since I've written, and so much has happened with my cancer.

Well, it turns out that the Taxol did stop working like we thought so I stopped that and had another PET scan in July 2nd. the PET scan showed that my liver lesion has grown quite a bit, as well as some lymph nodes, as well as some new lymph nodes. My bones seemed stable.

I had prayed really hard before the scan that I could just be okay with the results and not get too down.  That really helped, because I didn't feel too discouraged. So Dr. Esplin prescrbed Xeloda to take along with the Piqray I'd been on for a few months.

I started those on a Friday night. The dosage is 3 pills in the morning and 3 at night.
Sunday morning , my birthday, I experienced some severe nausea. When I went to throw up, the pressure in my head was so painful.  That night or the next, (all a blur) I took my pills and I threw them up right away and my head felt unlike anything I had ever experienced before. I started screaming in pain and was on the floor. The next morning was set for a brain MRI cause Esplin thought I could have tumors in my brain. As I was getting ready, I just coughed and my head split again.  There's really no way to describe it. Something like upon breathing after coughing or vomitting, whatever blood flow was cut off and then as it spread to my head again it was like swords all over my head just stabbing me. We hurried and got in the car and I'll be honest, I literally thought I was dying. I was telling Kevin every last thing I could think of because I was sure I wasn't going to make it.  They gave me a Valium which helped a bit just because it made my muscles relax a bit.

Esplin called me a few hours later and said the scan was clear. He didn't know what could be the cause as he's never seen this with my medications. When the severe symptoms subsided a bit, I felt a bit better, but my head still ached so badly with every heart beat.

In the meantime I stopped taking my new chemo pill Xeloda. Wednesday was okay as I didn't feel nauseous but then Thursday evening  it happened all again. If it was possible that this could be worse, it was. Kevin called 911 and it took forever for the ambulance to arrive.
I made Kevin send the girls to our good friends, the Smith's, because I didn't want to scare the girls with an ambulance coming, etc.  The EMT's arrived and my vitals were all good, except my blood pressure was high cause I was screaming.  They explained some thing about taking me in the ambulance and Covid....(I don't have any idea what they meant,) but Kevin took me to the ER.

They immediately gave me morphine, didn't help, more and more and more and finally it started helping a bit (I forgot to mention that the pain killers I had at home weren't even touching the pain)
So I had a CT scan, may blood tests and even a spinal tap. All of them came back clear.  I couldn't go home because my oxygen levels were too low because of the morphine.  Finally the ER doc gave me a cranial nerve block. It was awesome, they sent us home which was 6:00 in the morning at that point and we slept. By 11 the block had worn off and the pain was back.  So I was in bed for the weekend with pain killers, etc. 
Monday, I was able to talk to Esplin again and he ha done some research and found a few cases of people on Piqray that had similar symptoms, even after a couuple of months on it.  So at this point he took me off of everything.  I waited and by Thursday, I was able to get up. and although I still have a headache everyday, it's so much better and I can actually do stuff.

In the meantime, he also scheduled an appt. with the radio- oncoloagist this coming Tuesday, about radiating my C7 in my neck because I have a lesion there and we though it may be encroaching on a nerve or something.

So by Friday, he wanted me to start back on Xeloda but start one pill and then gradually get up to a full dose.  So we'll see how it goes. 

Faith is hard

Where to begin?
My tumor markers have been consistently going back up. So Esplin started me on a new chemo pill called Piqray in addition to my weekly infusions.

That same week, I had scans. May 13th. Esplin called me back the same night to tell me that everything was still stable!  I was really surprised!

Had my appointment with him on the 19th.   He explained that the fact the markers were going up meant that even though the scans show I'm stable, the cells are more active. He also mentioned that the cells in the bones go into these pockets in the bones and you can't really see them on scansSo I got my infusion along with my monthly Faslodex shots and my 3 month Lupron shot.  It hit me a lot earlier than usual and I was down for the count.  The next day I'm used to being sick, but this time was worse.  The digestive stuff was more frequent and I ended up with a fever Wednesday night.  It was back down by the morning. Thursday I'm usually ready to get going again, but this time I was still feeling sick.  Digestive issues, headaches, pains all over my body and nauseous. Not to mention that my taste has been worsening the past few weeks.  I couldn't even eat ice cream it was so gross.

By Friday I was pretty much back to my normal, but I'm definitely feeling the effects of two chemos vs. one.  Oh also, my hair has started to fall out again.

I'm frustrated and I am having a hard time thinking I have to stay on Taxol when it doesn't really seem to be helping much anymore.... Yet, if I go off of it, what will I do?

I'm frustrated that I'm over a  year into this and I'm no better than I was. Nothing seems to be working very well and we're checking off the treatments way too fast.

I'm working constantly on Faith in the Savior. Faith that everything will be okay no matter what.  It's hard to let go.  True Faith is hard. So very hard.  Being okay with whatever occurs, knowing it's better than my plan, letting go of control of something that I don't have control of in the first place.  I'm trying to practice it and some days or moments, I do better than others.

“Fighting through darkness and despair and pleading for the light is what opened this dispensation. It is what keeps it going, and it is what will keep you going.”
―Elder Jeffrey R. Holland, Created for Greater Things

“If for a while the harder you try, the harder it gets, take heart. So it has been with the best people who ever lived.”
―Elder Jeffrey R. Holland, "The Inconvenient Messiah"

Roller coasters

So I had my appointment with Esplin 2 weeks ago. There wasn't really much to talk about. He's still quite surprised that I'm doing as well as I am. No neuropathy or mouth sores, hand or feet sores.

They took my tumor markers and I got them back a few days later.  They both went up a lot.

So I went back into my hole for a bit. Cried, questioned and regrouped.  He had me come in a week later to check the markers again. I did and a few days later found out that at least one of them is down a few points again. (Other one isn't in yet)

I start wondering what is going on and am just sitting by waiting.  I have another chemo this week and then a week off.  Then I'll have my appointment and he will order scans.

Lord, do you love me?

I never know what to title my posts. So I think I'll wait until I'm done and see if there's something that sticks out.

Today is Sunday, I think.  Being quarantined makes it hard to remember what day it is as we do pretty much the same thing. We've been trying to add new things each week to make the Sabbath more special than the other days.

I've had some random thoughts, so this post will probably be all over the place.

I've just had my week off of chemo.  I don't feel more energetic or anything, I just don't have to go through 2 days of feeling like I have the flu. I really like it, but it makes going back all the more hard.

I go in Tuesday for my appointment with Esplin and then my chemo.  For some reason I feel a bit more anxious.  He'll take my tumor markers....which we won't know for a few days after my appointment, but then I'll know if it will be time to stop Taxol because it's not working or if I will continue with it because it's still holding things at bay.

I've really been tested with mental endurance.  I feel like I just can't keep going on this nasty poison, but the alternative means that it's not working, so then I want to stay on it.  I've been reading all these facebook posts in this new group that was created for the worldwide fast.  I've been reading everyone's miracles and  I so want one for me.  I dream of getting a scan and having my doctor call and say, Kristi! There's no sign of Cancer!  No sign at all!   However, that's not going to happen....and then just as I type that, I think see Kristi, you don't have enough faith....   Oh How I want a miracle, but I know I have this trial for some reason, and even though I don't know what that reason is, I don't think I've learned what I'm supposed to learn yet. I have A LOT to learn!

I've had the great opportunity to travel a lot during my life.  There's been a unique feeling that happens to me sometimes when I travel.  I won't be able to explain it well in words, but I'll try.  There have been times when I'm on a tour of ancient ruins or something and I kind of pull out of myself for a bit and see all of the people and feel the hugeness of the world and I feel very, very insignificant. I feel very alone in the middle of it and wonder how on earth my Father in Heaven can possibly be aware of ME.  I pull back in and reassure myself that indeed he is aware and I move on and forget about it...on purpose.  Maybe I was afraid at that moment to ask Him if he is, because 1-  It feels too huge and 2- maybe I was afraid of the answer.  I have felt that a few times during this pandemic.  With all that is going on with the world, reading about some people's miracles and other people's tragedies and thinking of all the people working tirelessly to help others, MY cancer feels very insignificant.  I start to think that my Father in Heaven can't possibly have time to help me, bless me, even be aware of me.  I think of the angels extra busy assisting people on earth who really need it RIGHT now.  Of angels welcoming new arrivals and teaching them and I'm just over here hanging out wondering if He still remembers I have cancer and I'm scared. If he remembers my girls are scared of losing their mother. If he remembers my husband is worried about losing me and how he will take care of the girls on his own.....If he remembers he doesn't feel good either.  If he remembers my child that struggles with depression and anxiety.
It's time for me to look back at my life and see the miracles I have experienced, to stop and count my blessings and all that proves HE does still remember that I'm over here scared of all of it.

I am reminded of Peter when the Lord asked him 3 times do you love me?  Do you think the Lord feels like Peter may have felt?  Lord, you know I love you. I've been with you, I've followed you, learned from you, helped you.  Kristi, You know I love you, remember all that I've done for you? Remember how I've blessed you and comforted you? Maybe he's feeling a little flabbergasted like Peter must have felt.......Lord how can you even ask me that? You know!  Kristi, how can you even ask me that?  You know!
I know that I don't understand His power.  I can't begin to comprehend how omniscience works.

“My beloved brothers and sisters, I testify of angels, both the heavenly and the mortal kind. In doing so I am testifying that God never leaves us alone, never leaves us unaided in the challenges that we face…On occasions, global or personal, we may feel we are distanced from God, shut out from heaven, lost, alone in dark and dreary places. Often enough that distress can be of our own making, but even then, the Father of us all is watching and assisting. And always there are those angels who come and go all around us, seen and unseen, known and unknown, mortal and immortal.” Elder Jeffrey R. Holland

And my heart is lifted, my faith is reaffirmed.

post note:  immediately upon finishing this post, the song from my mom's funeral came on the radio "She Put the Music in me"   There's my angel and there's my miracle.

Week ?

I've been wanting to write, but my kids have taken over all the computers and electronics in the house!

We've been quarantined now for 3 weeks and we're all going a bit crazy.

This week is Spring Break for school, so now I'm having to entertain them for even longer in the day.  I think they should just keep doing school and get it over with a week early instead of Spring Break.

Since I last wrote, I have had 2 chemo infusions and 1 doctor's appt.

Kevin hasn't been able to come with me. So he listened on the phone to Esplin.  Nothing very eventful at that visit.  He took my tumor markers and one went up again and one went down. So we wait another month.

Chemo is  Chemo.... the chairs are spread far apart and they took everyone that gets infusions for other things like MS or Chron's disease and put them in another room entirely and left it just for us cancer patients.  They do screening when you first walk in the building and at reception, but that's about it.  I guess I need to get a mask now.

It's been a crazy time and the focus has been so much on this virus and I wonder if anyone in my family will get it and then I wonder if I will get it, and then I wonder if I would survive it, and then I wonder if I'll survive my cancer and it's one eternal round.

It's been interesting to see how people react to this virus. Some just act like it's no big deal and some are so anxious it's crazy. It's a lot like cancer patients. Some people are at a place of "I've been doing this for 10 years and it's no big deal" and there's people that are brand new getting this diagnosis and their world is crumbling all around them. Then there's people like me.  I'm not quite as shocked as I was a year ago, but I'm still wondering if any of these treatments are going to work for me.  As far as my mets go, I'm in no better condition than I was a year ago. I'm not any worse at the moment either....except for losing my hair, my eyebrows, my eye lashes and having more pain when I try to do anything physical.

 I still struggle with thoughts of being ready to write letters to my girls for special occasions and not giving in to those thoughts because it makes me feel too sad.

I don't know what the Lord has in store for me, but this weekend was General Conference for my church and it was fabulous. Full of hope in the Savior, learning to "Hear Him."  Celebrating the 200th anniversary of The Savior and the Father appearing to the prophet Joseph Smith and hearing so many wonderful talks and testimonies.  I know it's all true and I'm thankful for that knowledge. It makes this disease and the fear of leaving my family that much easier. 

Tomorrow I have chemo and then a week off.

World Chaos

Sometimes I have all these things in my head and want to write them down and then I get distracted and forget what I was going to write. So then I don't write and now it's been forever/

Right now I'm on my week off of Taxol. I'm scheduled to see Esplin next Tuesday and do another infusion.

I'm scheduled, but right now our country is in chaos. We're all self isolating and social distancing because of the Coronavirus.  I am in the "at risk" category because of stupid cancer. In addition to not having school or church, we are also not doing friends. 
I'm not too scared that I'm going to get it. I hope I don't and I don't know what my body would do if I did, but I am concerned that I won't be able to get my chemo treatment.  They're really cracking down and closing up places. I got a message this morning from Revere Health that some appointments could be cancelled. We also had an earthquake this morning. Sheesh

The other day I had a weird experience. I think it was Thursday or Friday and we were getting all this information about school's closing and so much stuff about the virus and I was so full of that, that I forgot about Cancer.  For the first time in a long time, I forgot about Cancer.  The reason I know I forgot is that I then remembered.

Remembering is like when you wake up and think it was a bad dream and then realize that it's not.  It's real.  And it hurts so bad.  It's a rush of emotions all at once and it's hard.
I was on facebook and I saw a post from a gal that I've never met, was planning on meeting soon, and is a year ahead of me in this journey and lives right here in my city.  She started on taxol in February and the Taxol actually stimulated the growth of her liver tumors and she is now in liver failure and have been given about 3-5 weeks to live.

She has the exact same mets as me. Bones and liver.  She is a member of my church and believes as I do about life after death. She never married and is around 42 years old.

It hit me like a boulder. I got scared and I cried and went to that dark place.  I crawled out fast, because I dd not want to stay there.  It scared me. and I've been trying to detach from it.

Now I am facilitating school to 4 kids and trying to figure out what is going on in the world.  A little secret I have is that I have kind of wanted the end of the world or the Second Coming to happen....I've been hoping that it will come sooner than later so that I won't have to die and leave my family. So my girls and Kevin won't have to worry about losing me.  I'm sure this is all a sign of the times, but theres's still so much that needs to happen for the end is here.

I sound like a real downer today.......maybe cause it's rainy and we've been locked inside. 
I'm doing okay and I'm hopeful and anxious to find out what my body is doing with this cancer. I hope that it's kicking it's butt.  I hope and pray that my tumors are getting weaker and dumber and won't be able to hold on any longer and just dissolve away.  I'm hoping and that's good.

Panic at the Disco

Valentines Day at 5:30 pm Esplin calls me and says your tumor markers have gone back up.

He tells me that the radio oncologist doesn't think we should do radiation but rather mastectomy. And he wants me to start the Red Devil.  That's the hardest chemo.

He panicked and so did I.

He let me take the next week off of chemo and do my scans on Friday.  So last Friday, Feb 21st I had both CT and bone scans.  I was super scared of what they would find. Scanxiety is real folks!

My appointment was on Tuesday.  My scans came back stable.  No progression.  No shrinkage either, but no progression. Even those dumb lymph nodes didn't grow. 

As a stage 4 patient, that is a victory.  I need to get more excited about those little victories.

He told me he panicked a bit and that's why he doesn't like to go by tumor markers alone.

So for now I'm continuing with 3 weeks of Taxol and then one week off.

I am the kind of person that needs a light at the end. A goal to reach.  I have to gear myself back up to continuing with chemo.  It's a serious mental effort on my part to be able to keep going.
I'm so tired of being tired and sick. I'm tired of being a burden to others.  My local church congregation has been feeding my family for 3 months and I feel like a burden.

I'm trying to teach myself how to be a sick person. To live with a terminal (we'll call it chronic) illness and still live.  I want to just do whatever I need to do even if I feel sick.

During the week off, Kevin and I talked about how I want to push for a mastectomy.  It just seems in my head that the breast is the one that's causing most of the alarms. As much as I don't want one, I just want it gone.  I told Dr. Esplin this, and he called my surgeon...remember Dr. Tittensor?  Anyway, they and the radio oncologist all feel the same.  Until I can get better control of my bones and liver a mastectomy would do more harm than good.  For one reason, the data shows it doesn't prolong life. Secondly, for the 4-6 weeks during preparation and recovery, I can't take any of my chemo meds and my bones and liver and lymph nodes can take off and get out of control.  So until we have better control over them and if my breast is still causing issues, then we'll revisit the mastectomy.

I'm glad that I'm at least stable. Now let's see shrinkage and my ultimate goal of No Evidence of Disease!