Hope vascilates

Some days or even moments are harder to have hope than others.

Rocky and T-Rex's

I've been talking with my uncle a lot. He's a "mostly" retired therapist and has counseled numerous people with terminal illnesses.  He was talking to me about the mind/ body connection. He told me about this hypnosis thing they did once on cancer patients. They had them imagine polar bears floating around on their white blood cells and every time they came to a tumor they would take a bite out of it. The studies showed that when the patients were doing the hypnosis, their tumors actually shrunk and when they weren't, the tumors grew.

So I have decided to do the same when I'm in the fighting spirit.  Although, instead of polar bears, they are T-Rex's cause they are the most ferocious things I can imagine. They float around on my white blood cells and rip those tumors to shreds. Of course it's not as fun if I don't have some good fighting music on. So since I'm a product of the 80's, I turn on Rocky 4 music and let those T-Rex's go.

At this point I'll try anything. I'm also open to some more ideas for good fighting music. Sometimes my little T-Rex's start boxing instead of biting and biting works much better, I'm sure.

    

Grief, Anger and Hope

The past couple of days have been pretty hard emotionally for me. Grief has a way of sneaking up on you when you least expect it.  I've really been missing my mom.  I think my brain is trying to deal with all this in some kind of organized way. I was at the beginning of grief of my mom when I got this diagnosis. As I've been thrust into this new cancer world, my brain has literally been overloaded. I have never felt so full mentally. Too full.

The grief of my mom took a backseat...but not really, maybe kind of a passenger seat. My focus has been on this cancer and dealing with all of the emotions and information overload. Yet at the same time wishing oh so much that she were here.

This weekend, mom came back into the forefront. I don't know if it was because it was Easter and I was filled with memories of her hiding our baskets and having Easter egg hunts for the grand kids. Maybe it was the memories of the past couple of years with my kids going to her party at her Assisted living facility. Maybe it was the creamy potatoes and peas that she and my grandma Scoresby used to make that we had at dinner? Maybe it was the song from her funeral that I heard on the radio. For whatever reason, I have been mourning her more intensely.

I've also been in the anger stage of grief as far as cancer goes. I'm angry that my life is changing so drastically. I'm angry that I get so dang tired when I haven't really done anything. I'm angry that everything seems hard. Everything.  I'm angry that I have to feel pain. I'm angry that I have to be the one with this.  Don't get me wrong, I don't wish this upon anyone! ANYONE!  Yet at the same time of all the people in my neighborhood, or all the people at the theme park, or all the people at my kids school, I am the one and it makes me angry.  I guess it's a pity party.

I don't want to be part of this cancer world. I don't want to have to be the flaky friend that may or may not show up because I may not be feeling well. I don't want to be the one that always picks the easiest thing for dinner cause I'm too tired. I don't want to be the one that everyone sees and when I see them see me, I see that look on their faces.  I don't want to feel each new pain and wonder constantly if a tumor has grown.  I don't want to be the one that is writing this oh so depressing blog! 

I'm hoping grief will turn into acceptance and I'll be able to find more positive things. For now, I'm letting myself feel what I need to feel. I'm hoping that by writing all my feelings out that I can get those out of the way and be positive and upbeat with my family.

And now hope.  Easter had so much more meaning to me than it ever has before.  I miss my mom, but because of Christ, I will see her again and be with her. 
I will die sooner than expected, but because of HIM I will be made whole. 
I will leave my children, but because of HIM I will see them again and they will see me and we can be together forever.
Because of HIM I will be with my rock, my love and best friend forever.
Because of HIM all of this pain (emotional and physical) is molding me, refining me.
Because of HIM all will be made right.

So In the midst of my Grief, in the midst of my anger, I have hope.  Hope to live, Hope to fight, Hope to survive and hope to endure.

Because of HIM.

The other side

When all this started, I was kind of 
angry and confused that my mom had recently passed away when I needed her most.  Not mad at her, not mad at God, just mad at the situation and felt more alone. How in the world was I supposed to handle these trials all at once and without her?
I have come to know that my mom was taken at this time probably for many reasons for her, but also she was taken at this time for me.  As her physical body hasn't been serving her well for quite some time, if she were here, there's not much she could do for me or for my family. and that would frustrate her. But I now know, beyond a doubt, that she was taken so she could be there for me and my family. As much as I just really need a hug from her, and oh do I need one, I know that she is helping me in ways I can't comprehend. I know she is working with our Savior to comfort me and my family. To help the Lord with his purposes for me. I don't know all the ways, but I know she is. I have strong faith in the post-earth life, paradise, after-life, whatever you call it. I know mom is doing amazing things and is happy where she is. I know that our Father in Heaven uses our deceased family and friends to come to our aid and that we can pray for that.

President Joseph F Smith declared: "When messengers are sent to minister to the inhabitants of this earth, they are not strangers, but from the ranks of our kindred {and} friends.....In the like manner, our fathers and mothers, brothers, sisters, and friends who have passed away from this earth, having been faithful, and worthy to enjoy these rights and privileges, may have a mission given them to visit their relatives and friends upon the earth again, bringing from the divine Presence messages of love, of warning, of reproof and instruction to those whom they had learned to love in the flesh"

I have felt my mom there to help me in ways that she couldn't from here.

Longest appointment ever

Yesterday we met with Dr. Esplin and he talked with us for an hour and a half! I didn't think Doctors did that?  It was awesome and we were able to ask all of our questions....at least the ones we could remember.

I go in for weekly blood draws and also did one right before we talked with him and I'm happy to report that my white blood cell count is holding pretty steady and doing really well. Some people don't do well with these meds, but I am doing quite well.  I have started getting a rash on my right elbow and the backs of both of my hands that itches like a dickens. It almost looks like bug bites. Unfortunately, I only had the elbow ones when I saw him and didn't think to ask him about it. After the appointment the rash went all crazy and I was itching. I googled Tamoxifen and rashes and although they don't say it's a side effect, the people taking it do.  I'll try some hydrocortisone cream and see how it works until I can call on Monday.

So I took a list of questions and I'm going to type them all out here so I can remember the answers

Can I see my PET scan? Yes, however they still haven't sent the actual visual scan. It's been requested.
Do you know the number of tumors and how big they are? He gave us a printout of the report, but it only mentions the more "troublesome ones"  not the little ones.
Findings:
* Head: No abnormal focal areas in the brain, lymph nodes in the neck, or thyroid.
*Chest: Heart is normal, tumor measuring 1.2 x 0.9 cm in cervicothoracic junction (which all I can discover is the place in the chest/neck whre the cervical spine meets the thoracic spine. I don't know if it's in front or back???
Another small tumor in the lymph node of the prevascular region ( front part of chest between the lungs)
Multiple lymph nodes in left axilla all different sizes (arm pit  directly under the joint where the arm connects to the shoulder) This has to be one of the ones that is causing me so much pain.

left Breast: No duh- huge mass, thick skin

*Abdomen and pelvis: Tumor in the right lobe of liver 2.3 x 2.3 cm  Two tumors in lymph nodes of the porta hepatis (a deep vein thing inside the liver) hard to view, but size is approx 1.6 x 1.4 and 1.0 x 1.5 cm

simple appearing cyst in right ovary and in the endometrial canal of the uterus

Musculoskeletal: Extensive tumors in axial skeleton -tumors seen involves the spine at multiple levels, rib cage, sternum, scapula and pelvis)
Right and left femurs and some other places along the femur. I can feel the one on the right. It sometimes makes me limp.
tumors on T2 vertabrae, L1 vertabrae, upper sacrum

I must light up like a Christmas tree.

How often will I have a PET scan? In the beginning every 3-4 months and the next one will be a PET scan, but after that, we will alternate between PET and CT and bone scans. My next one will be in June.

Should I have my ovaries removed since they produce Estrogen?  If I was stage 1-3 possibly. Stage 4 no. for one, it really messes me up and causes a lot o problems while I'm dealing with this other stuff and 2- It hasn't shown to really help.

What is a targeted treatment?  ibrance is a targeted treatment. It goes and finds certain proteins in the cells and targets those.

What does Oncotype score mean and should I know mine?  Doesn't apply when you're in stage 4

Are there other things I can be doing? I don't feel like I'm doing enough? This is the absolute best thing to be doing right now. We're giving you the best.  Again we're in for the long haul. If we beat you up now, your body won't be able to fight well later.

As much as I don't want a masectomy, wouldn't it be good to cut off the mother ship? In some cancers like kidney cancer it works. In breast cancer, it doesn't really seem to help much and it's hard to heal from the surgery.

Is it really possible to live a long life? Yes, however, I can't tell you how long that will be.  For some it is a year but I know of a woman who is on her 27th year. Everyone is different. We just don't know and we take things that come up and deal with them and switch things around.

I really hate that answer. I just want to be guaranteed that I can live even a decade. In other words they just don't know. It is literally one day at a time and will be for as long as I live. He does say that the meds I'm on now, if they are working now, will eventually stop working. and we will switch to others.

He gave me some stronger pain killers for my shoulder.

As for how I am doing emotionally?  I still have my moments and they are often, but I think I'm settling in. There's not much else I can do. He reassured me that his job is to keep me living and to really live.  Even though I hurt and feel old, I am going to try to do just that. Live.

A week in Florida

Got back late last night from Florida. It was good to get away. It was tiring, frustrating, fun, expensive, freeing and crazy.

Our flight was delayed so we didn't arrive until 7:00 in the morning so we slept most of the day Wednesday. Thursday and Friday were at Universal and boy was I worn out. So Friday we went to Epcot and got me a wheel chair. I felt so stupid at first. I mean it's not like I can't walk!
I got over the people looking at me thing pretty fast and after the day was done, as  much as I hated to admit, it definitely helped me be able to last throughout the day. So we did the wheelchair on Monday and Tuesday as well. Sunday was a nice break to just sit and watch conference. Can't wait to read Saturday's talks.

So I've been on Tamoxifen, which is a hormone blocker and ibrance which is a chemo pill. I seem to be handling the chemo pill quite well but I'm only on my first round so fingers crossed. I will take it for 3 weeks with 1 week off to let my white blood cells recoup. Then I go again.
The Tamoxifen is making me tired and my body aches. I feel like an old woman.  Before we left for the trip, my shoulder started hurting where a tumor is and it radiates down my arm. Some days are worse than others and some moments in the day are worse than others. Obviously, using it aggravates it, so I try to limit using my left arm. Some ways I move it, I get a sharp pain but most of the time its a constant strong ache. One day on our trip it was so bad I had to call the doctor. Luckily, Kevin brought his leftover drugs from neck surgery and they told me to take half of one of those. It took the edge off and I was able to go and play.

It was hard to come back without my sister, Dianne. Having her here those 2 weeks was so helpful emotionally as well as physically for me. After I got the news, even though I didn't feel differently physically, I was so shocked and upset and overwhelmed that getting kids off to school and doing everything was too much for me.  I can't thank her enough.

Now it's back to reality and I'm not so sure I'm ready to face it.  I go see my oncologist tomorrow where I will be able to ask my questions and get my weekly blood draw.

I am learning some things about "Mets" as it's called. (Metastasized cancer)  I guess it's misunderstood a lot and people think that if you get it, it's because you weren't taking care of yourself.
People don't understand why you're not on the hard chemo, like you're giving up. They don't understand that it will NEVER be gone. Breast cancer is cured, Metastatic Breast Cancer is not.

I also have so many people sending me recipes or diets etc. and although I appreciate it, I talked with Dr. Esplin about what the best thing is. He said that all of those "treatments" have lots of testimonials, but no data to back them up.  It may help Joe Shmo but not Sally Soup.  He said the best thing is to try to eat healthy as best as you can and when you need a burger and shake to just go for it.
To be honest, I was kind of relieved to hear it. My mind is more overwhelmed than it has ever been before and I don't know that I have enough brain power to go on some complete vegan diet or smoothie diet or Kale diet or even Keto.  But at the same time, I stress about not doing absolutely EVERYTHING I can to kick Cancer in the butt. He helped me realized that I just need to keep my mind positive, eat as healthy as I can and that is all I can do.

Maybe I'll do the Kale and Vinegar diet when I'm at my last resort.  Blech