Heather

I posted this on my Facebook page today.

This morning Heaven gained an extraordinary angel. This picture is a few years old, but it's how I remember her the most. This was before her body was damaged from the effects of brain cancer treatments. She had a unique kind of cancer and it started when she was about 10 years old. She had to relearn to walk. I don't even know how many times it came back, but the last time was the last time. She has been put through the ringer, literally became deaf, nearly blind, lost tons of of weight, trouble walking and hasn't even looked like the picture below for several years now. She taught me so much about attitude in the face of adversity. She taught me so much about service. She did everything and anything for everyone. She always had a giggle and a smile and of course loved her 2 little girls fiercely. In January, she was given 2 weeks to live. I contacted her and said my goodbyes and she still had a positive attitude. She made it a few more months. Thanks for your example Heather. 

I hope that if and when my cancer progresses so far and my body has crumbled under the effects of the many treatments, that I can have as bright of an attitude as you. Be at peace sweet Heather and rest from your earthly cares. I know you're already serving and giggling.

I'm wondering if I can handle her funeral. I'd like to be there to honor my sweet friend. I wonder if I can compartmentalize and not feel too personal about it, especially when I see her two girls.

Have I mentioned that I hate Cancer!

This week has been kind of up and down. Monday we went to the cemetery and that was good but hard. I I just wanted to talk to my mom, ask her for her wisdom and get a hug.
Also, my drugs can make me pretty moody and I was on a roller coaster.  I've had a couple of days where my left ankle from just below my knee down hurts so bad. Doesn't matter if I'm walking or not. Not much will help it. I've been trying to put off the heavy pain killers as long as I can. Apparently Claratin helps with bone pain as well as Aleve.....which I'm not supposed to take that often because it's a blood thinner like Advil. It has hurt to the point of tears. The past three days though I haven't  felt anything and I've even been doing yard work.  If feels good to act normal

The lessons

Yesterday, for some reason, I ran into a lot of friends. So I talked a lot about me.  It was exhausting.
A lot of them mentioned how I look so good or "normal" or  that I act so normal or upbeat.  I was thinking about this and it made me wonder if I was being fake or genuine? I realized that I'm just being me.
I think we all try to put on our positive face when we go out and I don't think it's being fake. I think it's coping the best and trying to have the best attitude. Some days we are more successful at it than others.

I assured these friends that I talked to, that I cry.....nearly everyday.  I get angry, nearly every day. I have moments of feeling sorry for myself, of feeling selfish, of feeling frustrated, and all the other emotions that come with being human.

I've admitted before that I am in a depression as I process this disease and how it's affecting every area of my life. But I also have a perspective of growth.

 I truly believe that each of us is a spirit son or daughter of God that came here to learn. To learn what we need and it's so completely individual. That's the beauty of it.
Some of us need to have wayward children. Some of us need to have infertility issues. Some of us need to have loss of jobs, divorce, deaths, and some of us need to have cancer.

I don't know that I believe that my Father in Heaven GAVE this trial to me. I don't think He CAUSED cancer in me. But I know he knows what I will learn from it. And I know he is hopeful that I will learn it.  I don't feel like a victim at the hands of God.

I worry sometimes that I will miss the lessons. For whatever reason, the things I need to learn need to be taught to me in the form of terminal cancer.  I worry that if I stay in a hole of grief all of the time, I will miss the lessons.  Will I learn patience? Will I learn humility? Will I learn long-suffering? Will I learn empathy? Will I learn Faith and trust in my Savior?  There's so many things that I need to learn and I don't even know what they all are, but HE does.

I don't want to miss the lessons.  I don't want to walk around with sadness. So when I walk out into the world, I put on my happy face because I have a lot to be happy about. 
I put on my brave face because there's not much I can do about it.
I put on my smile, because I don't know what lessons everyone else is having to learn.   Your trials are no more or less than mine. 

I've said it before and I'm sure I'll say it again, I have an amazing life. I have been blessed beyond measure. I have so many things to be thankful for. I have trials, other than cancer, just like everyone else. I always have and I always will. That's why I'm here. 

I heard it taught that we chose our trials before we came to earth.....or at least that we knew what they were and we agreed to them.  I don't know if that's true. I've never read that from a prophet or anything, but thinking that way makes me a bit more brave. If I knew what I was going to go through on earth, and I still chose to come, I must have known how valuable the lessons would be. I must have known it would be worth whatever blessings I will attain in life after death. And I know there's going to be some amazing ones.

I don't want to miss the lessons.

Tumor markers

Last week at my Dr.'s appointment, he drew my blood as usual and they checked my tumor markers. A couple days later we called to find out what they were.

My markers went up and I felt defeated.

For those that don't understand. Tumor markers are different proteins found in the blood that tumors send out.  When they are up, it can indicate cancer. When they rise, it indicates that either there are more tumors or that the existing tumors are growing larger.

I felt so frustrated that my cancer is growing and why do I have to keep doing what I'm doing for another month if it's not working?

After talking with Dr. Esplin and some google searches and some reassurance from a group I belong to on facebook, I felt better.

Apparently, tumor markers don't work in everyone, so sometimes they're not very reliable.  Sometimes tumor markers rise at the early stages of treatment (for whatever reason)

Sometimes tumor markers rise for other reasons.

Dr Esplin told me not to panic just yet. Scans are the best indicators of what is really happening. He said it's too early to tell and to breathe.

Sigh, okay I'll wait.

Trying to get to this point

This is where I want to be. Not there yet....working on it

Infusions

So as I posted last time, I went in on Wednesday and got my first of many Zometa infusions. It's a bone strengthener and they give it to you via i.v.  When I asked Dr. Esplin about the side effects, he said none with a caveat that some people complain about bone aches for a few days.
Wednesday night I had a hard time sleeping because both my thigh's were aching. Nothing really new, and I woke up feeling okay. By 10:00 I was in some serious trouble. I hurt all over my body, I had chills, low grade fever, flu like symptoms, my head literally stung as well as every inch of me just hurt.  I managed to make it to Kinli's 1st grade program and then I was down for the count.
I slept on and off with the help of Tylenol, but it only helped slightly.  I felt so so terrible. The next morning I still felt crappy and a call to the Dr. and a google search confirmed that many people feel this way with their first infusion and it supposedly gets a bit better each time.  I stayed in bed until Maili's voice recital and then I hopped right back in. I do feel much better today, but still feel sore. My left calf and ankle started hurting even a bit before the infusion and I have had issues with it on and off.  Sometimes I feel like I'm faking the pain because it hurts one minute and I'm limping and the next I'm fine. I feel like a kid trying to get attention.
They didn't scan past my mid thigh, so I don't know about cancer down there, but I'm pretty sure it's there.  I also forgot to tell Dr. Esplin about the pain in my chest wall. It hurts when I breath deeply, but is better when I have the support of a bra. I'm sure there's cancer on the chest wall under where this whole thing started.

The whole thing has made me super weepy, emotional and depressed the past few days. I HATE Cancer and I HATE that is part of my life forever. I am still trying to get to acceptance, but it's a hard pill to swallow (pun intended)

I feel like cancer has taken so much from me and I'm angry. You know when you wake up and remember your bad dream?  Everyday I wake up and remember I have cancer and it stings every time.

I hate when I don't feel good because I think it stresses and worries my kids.  I try as hard as I can to pretend, but when you can't make it up the stairs with a basket of laundry, it's hard to hide.

I wonder if I'm ever going to feel good again? Am I ever going to feel like I have energy and excitement in my body? Like I could do a cartwheel if I wanted to? (not that I did a lot of cartwheels before)

Dr.'s appointment #3

Yesterday was my one month check with Dr. Esplin. I came with more questions and left with some answers and a boost of hopefulness.

So our blood is made in our bone marrow. The drugs I'm on as well as my cancer in my bones, affect my bone marrow, so I've been going weekly for blood draws to check my white blood cell counts.
They've been holding steady. I'm on my off week of ibrance chemo right now and he checked my counts as well as looked at my counts from last Friday......which was at the end of my 3 weeks on.  My counts are doing really well, which means my bone marrow is doing really well.
So I don't have to go for weekly blood draws anymore.....just at my monthly appointments.

I did get an infusion of Zometa which is a bone strengthener. I will do this once every 3 months. The reason for this is that as a tumor clings to a bone, it sends out stuff that eat away at the bone around it.  As the tumors shrink, I could be left with holes in my bones that will make it easy to fracture them.  The Zometa is supposed to help the bone heal faster and regrow itself. They use this same stuff for Osteoporosis. 
I went into the chemo room and just couldn't look at the people sitting in those chairs. Luckily they took me in the back to some different chairs and I sat for a half an hour with an i.v.  
I have been told that at some point, chemo will be used for me. I just can't look at those chairs yet. They scare me.

We finally got to see the images from my PET scan.  I have so many more spots than I even imagined.  I was trying to be generous and say maybe I have 20 spots, but there's more. Too many to count. And those are only the ones that the scan can pick up. It's everywhere.

This is one picture of me from the back. All the white spots are cancer.....the bright ones and the not so bright ones......except for my brain and for the big white spot at the bottom, that's my bladder.  He was rotating it while I snapped the photo, so it's kind of not very clear and it's only the back. It doesn't show the ones in the front or sides.

TDr. Esplin took another look and feel of my breast and lymph nodes. The good news is that it's looking and feeling so much better and he can only feel the one really huge lymph node and it's definitely smaller.  As he pressed on my spine and ribs where I have a gazillion lesions, there was no pain.  I still have pain in my legs and in my shoulder blade and in my chest.

He sounded quite optimistic that the drugs are working.  I was happy about that.

We asked him about my tumor markers.  The thing about tumor markers is that if they're reliable, they're helpful. If they're not, then they're not.  
Certain proteins from tumors get released into the blood and the blood tests check for this protein. As the number goes up, it means that there are more tumors OR that a tumor is getting bigger.  If the numbers go down, the tumors are shrinking or disappearing. However, tumors are very smart suckers and they mutate so the proteins change and that makes the tumor markers in the blood unreliable. The only true way to know if cancer is progressing or regressing is scans.

Dr. Esplin wants me to be on 3 full rounds of ibrance before they do another scan. So I thought I was going to get one mid June, but he wants to wait until late June or early July. sigh

As tumors shrink and I'm left with just a couple, I will probably get radiation on those and probably regular chemo at some point.

I asked for more clarification about why no surgery and why no hysterectomy. Pretty much got the same explanation.....neither one will help much now that I'm stage 4 and doing those will cause me more trouble and not really help.  I also learned that ibrance is better than i/v/ chemo. If this was me 5  years ago, I would be on regular i.v. chemo, no doubt.  ibrance is only about 5 years out from being FDA approved. Studies are currently being done are other stage cancers to see if ibrance will help them.  I guess when they test a drug, they go backwards from stage 4.
He said that after the testing, which takes 5 + years, if ibrance and others, show to work on other stages, then regular chemo could become a thing of the past.  This would be really great news for everyone. ibrance and these targeted chemo's are so much easier on people. Not everyone tolerates them as well as I am, but there's still so much less side effects than the other chemo.

Planting hope

I still question whether or not I should make this blog private again cause I have some deep thoughts that I need to get out and I'm not sure I want everyone to know them. It makes me feel very vulnerable and a little psycho to share some of my deepest, darkest thoughts.  I think that if people know these thoughts then they will think differently of me or act differently around me....but they are anyway......

As strong and hopeful as I may sound sometimes, I've been in a depression and so has Kevin . and I think even a couple of my girls are dealing with their own levels of depression.  I wish I could take the burden away from them. I wish I could deal with this secretly on my own and not have to worry anyone.

When I first got this news, I don't know how to explain the overload in my head. I literally couldn't handle it. All of that coupled with all the drowning of information dumped on me about cancer and Mets and chemo and facts and fiction. I just couldn't process.  I forgot and still do forget things easily. I walk around like a zombie sometimes not knowing what I'm doing.

The trip to Florida helped take some of those thoughts and put them on the shelf for a bit and I really needed it. I wouldn't say for me that the trip was fun. I was just managing, but it helped.
Coming back, it's been interesting to see what my brain is doing handling all of this.  The darkest and scariest thoughts are really down deep and even when I think of them, my brain doesn't let me truly absorb it. It's protecting me. But I know it's there.  At times my grief is about my mom. At times it's about Kevin and all that I'm heaping upon him unintentionally. At times my grief is for my girls and worrying how they are doing or will do without me. Sometimes my grief is for others and at times it's for me.

I still get up everyday and do my stuff and I'm thankful I still can, but everyday I wonder how long I will be able to.

I love to plant. I love to plant flowers and gardens. I love to nurture them and see them grow.  This year I've been scared to plant.  Part of me is just depressed and I just don't feel like it. Part of me feels like planting is false hope and what's the point. Part of me is worried that I won't be able to care for my garden in the late summer. Part of me just thinks it sounds too hard.

However, I mentioned a desire to plant to Kevin and part of my mother's day gift was that he got new soil and got my garden boxes ready to plant.
I actually got a little excited and I went and bought vegetables and flowers. Yesterday and today I planted.
And while I planted, I hoped. I hoped that I would see them flourish, I hoped that I would be able to care for them. I hoped that in the Fall I will be able to clear out my planters to ready for winter and do it all again next year. I hoped that things will stay as they are now and that my medications are working and I won't have to try new ones that may make me sicker.  I hoped that my next PET scans will show shrinkage and not growth.  I hoped that I can keep feeling like this for years to come.

I hoped for a bit and that was good for my soul.

Mother's Day

Kevin and the girls did a fantastic job of spoiling me yesterday. I was dreading it. I just wanted to skip over the day, but honestly it was better than I thought it would be.

It was my first mother's day without my mom. I noticed the empty chair a little bit more, I noticed all week every time I thought I need to get something for mom and then remembered that I didn't. Which was actually bittersweet because I always stressed about what I could get her to let her know just how much she meant to me. I noticed how much she was in every thought, I noticed how much she was missed.

We went to the cemetery to see her grave.  They finally have grass laid on top. It's still kind of dead, but hopefully by memorial day it will be green. Kevin and the girls hadn't seen her headstone yet.
We gave her a single rose and took a picture. Oh how each of us miss her.

In the back of my mind, I kept wondering what the next year has in store for my little family and if they will be at my graveside on mother's day.  It's a very sobering thought and one that I hope doesn't come true for a long time......yet it is a reality.

Most of the time people are concerned about me and how I'm feeling physically and emotionally, but I thought a lot yesterday about how these people that mean the most to me are struggling.

Struggling with fear, struggling with understanding, struggling with even knowing what is going on but knowing it's something big and not good.
This whole time, people have been asking me what they can do for me and I always say that I'm okay physically and am still able to do things. I don't know if that will change in the near future, but one thing that has been extremely important to me is that my kids see me doing my things. I don't know if it's me trying to hide how serious this is, or my pride, but somehow I feel that if they can see me being normal then they will feel safer.   That's important to me.

I don't know what to do to take care of Kevin. He is our rock, but he admits that he's scared. I hate that I've brought this trial upon our family. I know it's not my fault, but it is me that has this dumb cancer and it is me that is the mom and wife. My role is my role and I hate that it's being threatened.

I usually don't like church talks on Mother's day, cause I usually feel guilty when they say all the things that "we" do that "I" don't.  But yesterday was great. The theme for the whole day was "You are doing enough" Motherhood is hard and we make mistakes, but we love our children fiercely and that is enough.

I got a 2 hour nap, a yummy breakfast, a yummy dinner and darling gifts from each of the girls and Kevin.  Kevin did so much to make it a good day, he knew it was hard for me and he made the day nearly perfect.

I am so blessed to have such an amazing family.  I pray that I can be here for next Mother's day and many, many more to come.

Do's and Don'ts

I'm learning quickly that most people, including myself, don't even know what to say to someone with cancer.

It's been an interesting thing to face.  The people at church....their faces have become a bit more normal as they see me more often, but they always seem extra excited to see me.  I'll take it.

The people at the dentist office who have "heard" but don't really know me have this look of "Oh it's her. It's that lady we were talking about. I'm going to put this giant smile on my face and keep staring at her and I'm gonna treat her extra special"   I don't even know what to do about that, so when they ask me how I am,  I say "good" or "fine" just like everybody else.  Do they really want me to tell them how I'm doing?

Then there's the kids that know because their parents have told them. They smile and wave even though they never did before. Some of them are scared of me, I think.

I feel conspicuous everywhere I go and honestly, I don't like it. I don't blame people, cause I honestly don't know what to say either. Mostly, I just want to be normal and not reminded all of the time that I have cancer. Having said that, however, I've come up with some do's and don'ts that may help.

1- Go ahead and ask me about it.  Most people are curious and want to understand. I'm a pretty open person and don't mind at all explaining things. I'm learning a lot and am willing to share.

2- Don't tell me about your sister-in-law's mother that had it and died. I don't need to hear it.

3- Do tell me about your sister-in-law's mother that has been fighting for 10 years and is still alive.  I need to hear that.

4- Don't say, "Cancer isn't as hard as it used to be with all the advances" You just can't understand

5- Don't say "We didn't think you'd be up for it" Please invite me. If I plan ahead with a nap, I can go to these things and I NEED to.  The more distractions and normal life, the better.

6-Don't say "Have you tried"  this diet, this vitamin, this treatment.  I know it's all well meaning and people are trying to help, but if you even knew how incredibly overwhelmed  my brain is at trying to follow my doctor's orders and worrying about the future.....there's no room for me to even begin processing this treatment your brother's nephew's son tried.  I am doing my best to eat right, follow my doctor's orders and be positive. That's all I can do at this point.

7-Don't say "If anyone can beat this, you can"  So the people that died, didn't fight hard enough?

8-Don't ask me about my prognosis, how long I have or when I'll be done with treatment.  The answer is, my prognosis isn't good, I don't know how long I have left and I'll be done with treatment when I die.

9-   Don't use my cancer as a measuring stick for how positive your attitude should be.  I don't own the market on trials, and I still want to hear about yours.  I care. Please don't feel that my life is worse than yours or your life is easier than mine.  I have a pretty amazing life with a big fat trial, but my trial doesn't make yours any less.

10- Don't say "you're going to be fine."  "You don't look sick," "We could all be hit by a bus tomorrow," "Stay positive," "At least you still have your hair,"   Just don't

11- "I thought cancer made you lose weight"  Actually, the medication I'm on makes you gain it. I'm holding steady. (No one has actually said this to me, but I'm self conscious about it)

12- Please don't tell me how negative thoughts, not breast feeding, being overweight, not exercising enough, eating meat, eating sugar, or anything else caused my cancer. The fact is, all of these could be the reason, and none of them could be the reason. Some of the healthiest, most fit, longest breast feeders, most positive, vegan, etc. people have been diagnosed with cancer.

DO tell me success stories
DO ask me how I'm feeling
DO include me
DO pray for me
DO understand when I am too tired
DO let me know you're thinking of me
DO laugh with me
DO be my friend.

Genetic Testing

A few weeks ago, I went in for genetic counseling/testing.  I had to fill out these forms with every name of every cousin, aunt, uncle, grandparent and all their ages and number of children they have/had and if they have had cancer.
It was quite the ordeal.

The good news came in today and they tested 36 genes related to breast and gynecological cancers and all of mine came back negative. I was a little worried because my grandmother died of ovarian cancer and I have an aunt who had breast cancer and some others in the same line that had breast cancer. 
From what they can tell, most of them were older when their cancer was found so that usually means it's just cells that go skiwompas.  Which is the same for me, except that I'm on the young side and mine went crazy early.

This is good news, because even though my daughters are at slightly higher risk now because I have it, they don't need to worry too much or have a mastectomy by the time they're 25. It also helps my cousins and their kids be a little less concerned as well.

Finally, some good news

Learning my limits

I had a mini break down last Monday as the negativity was building for a couple days. So I called Uncle Lynn in tears.
I described to him how I'm trying to eat right and exercise, but how some days I hardly walk down the street and by mid-day, I can tell I've done too much and I'm pretty worthless the rest of the day.
The hardest part about that, is feeling completely out of control of what I can and cannot do and even knowing what that is.
So he challenged me to start making a record of how far I go on a walk or whatever exercise, and note how I feel later in the day. Which I realize is more about my feelings of control than it is about my exercise.
So, my efforts to record and take note were kind of thwarted as I went to BYU's Women's Conference on Thursday and Friday.  You end up doing more walking than you even realize you're doing and Thursday evening I was super tired, but Friday evening I was downright ill.
This fatigue is different than any I've felt before and it's hard to describe. I'm fatigued when I wake up even though I'm rested. But as the day goes on and I'm either physically or emotionally/mentally busy, it drains me to a point that is way past hitting my wall. I cannot think, I cannot function, I cannot do anything and it makes me nauseous.
So Friday evening I just went to bed and Kevin took care of everything. Saturday wasn't much different and I tried to rest, but I just want to fertilize my dang strawberries. (which I didn't do) Again by dinner time, I was nauseous and exhausted.
I've thrown up a few times the past few days and wonder if it's just my body reacting to fatigue, the chemo levels are higher or if it's because I kind of slacked on my water intake the past few days to help flush the chemo.

I'm paying attention, but don't feel any closer to knowing my limits and I think they may be different depending on the day. So it's quite frustrating. I'm going to try better to keep a record and maybe I'll see patterns or something?