Trying

I'm going for chemo at 9:00 AM. If you remember, the last time I had a fever and was admitted for a week at the hospital. Please pray that I can get treatment. I haven't had chemo for my liver since August, and the tumor markers in my blood have been rising.

Needing a lot of prayers lately...

Re-Starting

Last week, I had a CT scan of my abdomen area. The results were expected: more spots in my liver but, thankfully, none in my other organs. This is a good thing.

My oncologist was waiting to get started on my liver chemo after I was done with the Dexamethasone (steroids). After I regained some strength.

Then, this weekend happened. Read yesterdays post. My oncologist had to put me back on the steroids, and it seemed to help. My knees did well Saturday to Sunday morning. No pain.

Unfortunately, after 6:00 pm tonight, my knees started to get stiff and swollen. I took Tylenol. Dr. K also gave me a prescription for a more powerful pain killer. It is in the family of drugs that I might or might not be able to take. We discussed this. We will see. I just don't want to have to take it and not be able to go to treatment on Monday.

I'm a bit anxious about my knees. I don't want to be in pain again. I'm praying!

But, the show must go on for my liver! I have to go back on chemo.

So I need MORE PRAYERS.

Tears, ER, and Teeth

After 7 long weeks, yesterday was the last day that I was supposed to stop taking Dexamethasone (steroids).

My life - Dexamethasone = more normal life

I couldn't wait.

Then, after dinner, I felt like I was getting a fever. There are two things that I don't usually get: headaches and fevers. My body started to feel warm and achey. My husband was at church with the kids and I had to call him home after it was over.

10:00 pm. That is when it all began. During my Dexamethasone time, I've had a few "arthritic" episodes. They have been centered on my knees to my ankles and towards the end of the week. I would usually wake up in excruciating pain, and it would feel like someone had used at 2 x 4 to crush my knees and left me there. I couldn't stay still nor could I find any type of comfortable position. It was just a waiting game for the Tylenol to set in (usually 1-1 1/2 hours). Just pain. During those times, my heart would remember those with rheumatoid arthritis...

Yesterday, I was going back and forth from a fever. I had to call my oncologist. Thankfully, she was the physician on call! My fever wasn't so high, so we decided to ride it out the night. Usually, cancer patients have to call when they have a fever 100.5 or above because it could mean that it is the sign of some type of infection.

Weirdly, I could feel something in my knees as I talked with her. We talked and hung up. Then, the full force started to hit me in my knees. Why does it always happen like that? My knees started to freeze over and I ordered my husband to give me 3 Tylenol (I have reactions to Vicodin/Morphine so this is usually the pain relief I get). I was in pain and now was just waiting. I also told him to give me a towel to bite on. I bite down with the pain - we live in a townhouse.

Well, I waited and waited. Relief never came. Five hours passed. Another Tylenol and two more Advil. Had to call my oncologist at 3 am again. I ended up going to the ER because I couldn't take it. I was a sweaty mess with a towel in her mouth.

My husband had to literally carry me downstairs. Not fun. They accessed my port at the ER and gave me some type of medicine - relief. I slept for 2 hours. Then, they discharged me.

As soon as I got to the car, I could feel the pain start again. The doctor gave me a prescription for some pain patch, which I argued with my husband to stick on my arm immediately. When I called my oncologist hours later, I had to immediately take it off. Powerful stuff with addictive, powerful side effects.

Have to call my oncologist who was on call all weekend and my brother has to pick up a prescription tomorrow. Apparently, they can't give prescriptions when on call.

Back on the steroids for now. But, I am glad to if it will stop the arthritis.

Can you also pray for my teeth? They have a been a bit achey and some don't look good. A friend said that after her chemo, she had a ton of cavities. I've heard of people who have had chemo and afterwards had to get dentures. Don't want to go there. Have to find a dentist also.

Ok. Have to stop. My eyes are squinting and closing.

Overall, needing prayers!!!

Post Gamma Knife Radiation

It has been three weeks since my Gamma Knife Radiation. I got there at 5:45 AM and must have gotten home at 4 or 5 in the afternoon. I was clamped into that device for most of the day. If you look on my round, stretched, steroid head, you will see how that thing was screwed onto my skull. A3 sometimes, still, can't look at it...

People ask: did it hurt? They do put anesthesia on the tips. It hurt a bit - hey, but I'm a mom. They told my husband to leave the room. I had to squeeze that "little brain, squeezy thing" really hard. The anesthesia kicked in later. Screws in your head. Then, I was fine.

When they were wheeling me to get the MRI, I saw my husband in the waiting room and I lost it. Had to ask one of the physicians to hand me tissue. Isn't that the hardest part? Seeing someone you love see you like that?

Which reminds me, my writing, speaking, proofreading (?), are not... always there. Be patient. Please.

As far as they could see in the scans, they got everything that needed to be taken care of with the MRIs. So thankful! I believe that I have to go back in a few months for another check up... have to ask my husband.

Have seen my oncologist twice to figure out treatment for my liver cancer - had to stop the chemo because of the ER visit. Unfortunately, the tumor markers in my blood have been creeping up. I will have another CT scan next Wednesday at 9:00 AM. This will determine my continued liver cancer treatment. Most likely the chemo + Neulasta shot that I have been receiving since January.

Please keep praying!

Gamma Knife Radiation

Have been on steroids since the ER visit. Not fun. Bloated. Exhausted. Low muscle tone. Very little sleep.

Will go for treatment tomorrow to get any residual from the surgery. Praying that it is the only treatment needed.

Going in at 5:45 AM. A few hours?

Please pray.

Trust Jesus

Had this chorus repeat itself over and over in my head. I don't even know the name of the song. It was a song we sang during worship. Just these two words stuck out. Thank You, Holy Spirit!

August 31
Had chemo

September 1
Xgeva shot

September 2
Woke up with a migraine (never had a migraine before), nausea, vomiting, dizziness, no balance, couldn't keep my eyes open
Went to ER
Had CT/MRI
Found tumor in my cerebellum
Couldn't eat but being pumped with meds

In retrospect
My vision had gotten horribly worse, despite an exam 2-3 months ago
Had been having major balance issues
Had some headaches sometimes (never dealt with headaches before)

September 3
The tumor in my cerebellum was the size of an egg
Met with my oncologist
Met with a neurosurgeon
Met with a neuro-radiologist
There was agreement that surgery would be the best option with radiation therapy after I recovered

So wanted to go home
So weak from not eating well and all the meds
Finally was able to go home
Would not have been able to if it had not been Labor Day Weekend

As we exited the final exit off the highway, I was overwhelmed with tears. So thankful for such a loving husband. So thankful for my wonderful children. So thankful for supportive, loving, praying family. I have lived such a blessed life! Why didn't I realize this more!

September 8
5:15 AM            Go to hospital
6:00 AM             Specialized MRI for surgery
7:00-7:30 AM    Surgery

Spiritually
I am covered
I can't describe the love of God that has filled and strengthened me

Physically
I need strength
Still recovering from last week's chemo (aversion to smells/not being able to eat well)
Still some nausea
Still some balance issues
Still physically weak

On Steroids
14 days to keep the swelling down
The nurse said that I could develop acid reflux
Please pray that I won't develop any stomach issues so that I can eat well and be strengthened

My Friend's Brain Surgery
A blessing in disguise
It helped shed the fear that comes with brain surgery

Having to Go to the ER
Brought all of this to light
None of it had shown up on my blood tumor marker
The neorosurgeon said that if it had not been brought to light, I would have been in a coma in three months

So thankful!

Prayers Go Out

A dear friend of mine had major surgery on Monday. They found a slow growing tumor in her brain - the size of a clementine. She has had it for years. Thankfully, it was benign. Unfortunately, they found it too late to save the vision in her right eye. She had most of it removed and will have radiation after she recovers from the surgery. 

I ask that you lift up "M" in Jesus name. Please pray for her recovery. Please pray for her husband and two young sons. 

Overwhelmed Again

These past few cycles of treatment have made my life and the life of my family very challenging. Who cares about hair loss, fatigue, and the myriad of other physical side effects that have made my life different from what it used to be. But, the build up of the steroids (kept my body from inflammation during the chemo treatment) and anti-anxiety drugs (helped me not to get nauseous and not to throw up during the chemo treatment) in my body are another story. 

This is a part of the chemotherapy process that isn’t really talked about nor well known. We all associate chemo with hair loss, nausea, and fatigue. We don’t associate chemotherapy with anger, confusion, agitation, feelings of sadness, loss of interest or pleasure, loss of memory, problems with memory, trouble sleeping, or trouble concentrating. You may be wondering how this is possible. Side effects.

For the past few months, my family and I have been on this chemotherapy roller coaster that they never chose to be on. I have to be on this roller coaster, because it is a part of my treatment. They are on it whether they like it or not. Families of chemo patients need so much love, understanding, and support also.

I don’t think that your oncologist can predict the exact side effects that you will experience during your treatment nor can they explain or prepare you for them. To be honest, I haven’t disclosed all that I have been experiencing, emotionally, to my oncologist, because I know what the solution will be: more drugs with more side effects which will put more pressure on my liver. 

Throughout this time, I’ve shed many tears. About my cancer? No. (This still baffles me but has a simple answer: Jesus. He has kept me and protected me, even from myself). About this and that? Yes. I can’t fully verbalize this, but those ahead of me in their treatment know what I am talking about. Today, I had one of those moments, but a good one. I was coming out of the bathroom, when I remembered the wall hanging that is seen as people enter our home. The majority have no idea what it says (unless they ask), because it is in Chinese characters. I know because my husband told me what it said when a missionary gave it to us. It says, “Immanuel.” It means God with us. 

Well, as I thought of these words, God with us, I was overwhelmed again. He is with me. He is with my family. He has never left us nor forsaken us. Even when I go cray cray, He is with me. Even when my world seems to have a fog over it. He is here. Even when I pull away from Him. He is with me. I started crying and dropped to the floor in thankfulness to Him. As I sat on my kitchen floor, I saw that God is still so good to me.

by pheenie23

CT Scans and Tech Scans

Last week, I had my three month CT scan. I cannot believe how quickly time passes. It was my "off" week of chemo, and it was packed with different appointments and engagements. Things just come in large waves - a lot of times.

Thankfully, I remembered to pick up the oral contrast ahead of time. I headed to the hospital with my stomach full of the water/oral contrast solution and more bottles of water for the next two doses of the contrast.

As I drove, I prayed. I thanked God for loving me. I thanked God for always being with me. Then, I had the thought to pray, "Please, help me not to 'read' the CT tech's body language." The CT techs are not supposed to tell the patients the results of the scan (big lawsuit) - only the doctors can do that. They try their best not to reveal anything, but they are human. They feel, and as a result, you can "feel" what the results are. The thing is that until you hear from the doctor, you aren't 100% sure. That means days of worrying for something that you are not completely sure of.

On this day, I asked God to help me not to read the tech so that I could enjoy the week. And, that is what He did. I couldn't read the techs. It was nice to walk out of the hospital not knowing.

The week was CRAZY with activity that was out of my control. I didn't hear from my oncologist, and I decided not to call her. The CT was on Monday, and I was going to see her on Friday. By Thursday, I started to waver about calling her. What if it was bad news? I didn't want to come out bawling from her office or while driving home. What to do? What to do? I ended up not calling.

When I was face to face with Dr. K, we talked about our families and then she told me. The cancer in my liver was stable. What does that mean? It means that it has not spread or grown larger or gotten smaller. From her perspective, that means that the chemo has been working and that we can continue to use it (three more months). Some of the tumor markers in my blood have also gone down which is always welcome. Hearing the news was like a fresh, island breeze to my soul.

Thank You, Lord. My life is in Your hands. You know better than I.

Amazing Love

This one is timeless and never too late.

by Peggy Merrit

By His Wounds

Meant to post this on Good Friday. Please excuse my lateness.

"Who has believed what he has heard from us?

And to whom has the arm of the Lord been revealed?

For he grew up before him like a young plant,

and like a root out of dry ground;

he had no form or majesty that we should look at him,

and no beauty that we should desire him.

He was despised and rejected by men;

a man of sorrows, and acquainted with grief,

and as one from whom men hide their faces

he was despised, and we esteemed him not.

Surely he has borne our griefs

and carried our sorrows;

yet we esteemed him stricken,

smitten by God, and afflicted.

But he was pierced for our transgressions;

he was crushed for our iniquities;

upon him was the chastisement that brought us peace,

and with his wounds we are healed."

Isaiah 53:1-5

Losing It - Again

My hair has been growing. Growing to heights that I didn't think that I could achieve without gel and hairspray. I woke up each morning to a new Yu-Gi-Oh hairstyle. I had to use hats to calm the voluminous waves that were created while I slept.

I so wanted to cut my hair, but was waiting since hearing from my oncologist that my hair would be falling out. Didn't want to waste the money of a haircut. So, I've been waiting and tugging my hair daily. Sometimes my kids would see me tugging my hair, and they would laugh. Why tug? Because I wanted to see if it was the day to shave my head! Let me clarify: I didn't tug all day. I would do periodic tugs. Being a second time chemo-hairloss-person, you just know when it's that time.

But, each day my hair kept growing. And growing. This time it had more of curl to it - no need for any perms. My hair looked puffy. The other day, a certain person who lives in this house who is not A1, A2, or A3, asked if I had gained weight. The answer was no. It was my puffy hair.

Well, the day has finally come. My hair is falling out in chunks. That is, when I tug at it, pull on it, or rub it. This is the stage of hair fall out, that I like to have my husband shave my head. Why now? Why not wait until it falls off by itself? I can't stand it. It is like having a Siberian husky shed chunks of its fur all over your clothes. Try getting all of that off your clothes. It ain't easy. It takes many of those roll-tape-things, and a lot of time.

This morning, I was sitting at the table with my children, and I kept pulling at my hair - it's a bit addictive when it starts falling off - and telling them that today was the day that I was going to have my head shaved. When A3 saw how I was pulling my hair, he came and started pulling my hair. After a few pulls, he felt bad for his momma and stopped. An hour and a half later, I went upstairs to his room to see what he was doing. I lay face down on his bed as he created creative creations out of his Legos. Then, he just reached over and pulled my hair. I'm telling you, it is a bit addictive. It doesn't hurt me. It's just neat to see how much will come off when you tug.

So I waited for my husband to come back from church. Had the clippers ready. Had him shave my head. We took some pictures for memories sake. Have one with all the shaved hair (from pic below) on top of my shaved head - looking like a mohawk. Thought it might be too wild of a picture to put here. We also made sure to throw away the hair, so that A2 didn't get to it and try and make a wig for one of her dolls.

And you know what! I look thinner! Fluffy hair can add weight on you. Have to remember that.

Now, I can wear the "IT" hat of Korea that my sister-in-law sent. Am I wearing it right?

Don't worry about me. God has me covered. I was actually looking forward to not having hair again. It is so much easier to take care of!

Halaven (Eribulin) Cycle 1, Treatment 2

Monday. The day I like, because I get to rest from the weekend. The day I dread, because I'm supposed to get chemo but don't know if I can. The child in me was hoping that my white blood cell counts would be too low for treatment. The adult in my knew that I needed to get treatment. Sigh.

As I had mentioned last week, my oncologist thought that I might be having a psychological reaction to everything. She prescribed Ativan (Lorazepam). Ativan is an anxiety drug that does have some anti-nausea properties. I wasn't too sure about this decision. I didn't want another powerful drug that had more side effects.

Well, I took an Ativan at 8:00 am. I went to the hospital. Got my blood drawn. Waited for the results. Found out that my white blood cell count was down to 1.0 (1.5 is the count needed to get chemo). My oncologist gave the ok because I was going to give myself the Neulasta (white blood cell boosting) shot the next day.

Thirty minutes before my chemo treatment, I was given another Ativan, a Compazine (anti-nausea drug), and 5-6 Dexamethasone (steroid). I waited and started to get a little more foggy. Tired.

Then, the Halaven came. I asked for a plastic container just in case. Then, I closed my eyes. I didn't want to see anything. I didn't want to be told when the injection occurred. I heard my husband and the nurse talking. I might have said something here and there. I was tired. Might have fallen asleep at certain points. Can't remember.

AND THEN, it was over!!! I couldn't believe it! I didn't feel a thing!

Thank you all for your prayers!

When I got home, I was super tired. I fell asleep before my husband left to pick up our children from our homeschool group. They came and I tried to wake up, but I couldn't. A bit scary. It took another hour or so before I finally got up.

Today, I'm still tired. Gave myself the Neulasta shot at 12:00 pm. I'm getting better at giving myself shots. The things you learn. Still having problems getting restful sleep through the night since starting the Halaven. Or could it be the Compazine? Or could it be the Dexamethasone? Who knows?

But, so thankful!

Halaven (Eribulin) Cycle 1, Treatment 1

Monday was my first round of Halaven. I had to go through the usual routine:

1. Get my port accessed.
2. Get blood drawn and sent to the lab.
3. Wait for the blood test results to make sure that my white blood cell counts were high enough.
4. Once the levels were established, wait for the drug orders to be sent to the pharmacist.
5. Wait for the pre-meds (anti-nausea/anti-inflammatory drugs).
6. Get the pre-meds (one anti-nausea/five steroid pills) a half hour before treatment.
7. Wait for the Halaven.

I was told that the Halaven was a quick treatment. The last chemo drug I had was supposed to take 30 minutes to administer, but the nurse put it through in 45 minutes because my body reacted so quickly to it (vomiting). Halaven was supposed to be administered in 5-6 minutes. Unfortunately, things didn't work out that way.

Monday, Monday. What could I say to describe my Monday? This is how it went:

1. My white blood cell count (ANC) was at 1.5. It hadn't been that low in a really long time! The nurse and I were both shocked. I did have a busy weekend...
2. I had to have the nurse call my oncologist about the pre-meds. Didn't want the steroids or the other pre-med that my oncologist had ordered. Had difficulty with both before.
3. As soon as the nurse started pushing the Halaven into my port-I FELT IT. My stomach dropped. I felt queasy. I felt weak. I didn't want to be there. I hated chemo. I wondered why I was getting this treatment. One quarter of the way into this 4 mL treatment, I vomited. Couldn't keep it together. Felt my throat burning. Tears flowed. Then, I realized that I had thrown up the pre-meds and steroids. Yuck!
4. The treatment took over an hour to administer because my stomach was trying to flip out of my body. Not a good start.
5. The nurse called my oncologist. She suggested that I might need a bit of an anti-anxiety, anti-nausea drug. I took it and felt out of it.
6. I was in the lab for five hours.
7. I just wanted to get out of there and breathe fresh air.

The nurse said that I might be experiencing anticipatory symptoms. They prescribed more of the anti-anxiety, anti-nausea drug... have to pick it up. Forgot the name. 

My oncology nurse called on Tuesday. She said that they can't administer the Halaven over such a long period of time, because it loses its effectiveness. She asked me, with complete respect and kindness, if I wanted to see a psychiatrist about these reactions. I said, "No." I'm probably the first person they have seen react so poorly to the Gemzar and the Halaven.

Can't stand Halaven. Can't stand chemo. White blood cell levels really low.

Need strength.

Telling Mom and Dad

On Wednesday morning, my mother called to see if her and my dad could come over. She had made some food and wanted to deliver it and make sure that we were eating well. I wondered if my husband had called her.

Before they reached my house, I struggled with how to tell my parents about the new spots on my liver or even if I should. It was going to be my dad's 78th birthday this week. I didn't want to spoil it for everyone.

I determined in my heart not to cry. I was going to be brave and stoic. I was going to be the pillar of a daughter that exuded strength.

Didn't happen. Broke down like a little baby.

While we were in the kitchen unpacking all the food, my mother asked how I was doing and about the CT scan. I asked her if she had spoken to my husband. She said no. It was then that the tears started to flow. I felt like a little child again. Do you remember when you were younger and you had suffered some type of hurt and cried? After a while, the tears dried up and you were better. BUT, as soon as you saw your mom or dad, and they asked what had happened, you started crying again. That is what happened on Wednesday.

But my parents were the strong ones. They were brave. They exuded strength.

I saw my dad go to the couch and start praying. My mother hugged me and comforted me with words that only God could have given her. We ate. We talked a lot. We laughed. And when they left, I felt so much better.

Thank You, Lord, for parents who love you and cover me with prayer. 

Thank You that they always point me to You - the Giver of strength and hope.  

Catching Up

After the Aromasin (hormone drug) and Afinitor, my brain hasn't functioned in the same way. It is hard to explain. I felt as if I as walking with this "fog" that was following me everywhere I went. Not a depression cloud. More like a I-can't-function cloud. I got some things done, but a vast majority of things got put on my I'll-get-to-you-later, I-don't-want-to-think shelf. I will try to write more about my Aromasin experience at another time... I think that I finally can.

I have continued with the Gemzar the first and third weeks of each month. It has already been three months with this treatment! My white blood counts have been terrific. I haven't had to delay treatment because of low counts. I did have to switch between several anti-nausea and steroid drugs to ease the nausea. We ended up back on the first anti-nausea drug that I had taken without the steroids. Unfortunately, the build up of the Gemzar in my body started to cause me to throw up. The last treatment, I threw up in the garbage can in the chemo outpatient lab. Thankfully, it was within my reach. Felt bad for the other two patients in the room...

On Monday, I had to go for my three month CT scan. I could tell what the results were when I saw the CT technicians. Did they tell me my results? No way! They can't. But, their body language told me everything.

Today, I found out the results. My oncologist said that she didn't want to call me. I could faintly hear her shedding a tear? She told me that there were new spots on my liver and that the ones that had been there had gotten larger. Next Monday, I will be starting a new chemo treatment.

I've cried and my eyes are all puffy now. What am I doing writing this? It helps me. But, most of all, I'm selfish. I want your prayers.