I needed this today.

It's been a week

It's been a week since I received the call that I will always have cancer until I die.

It's been a rough week. A strange week. A foggy week. A tiring week.

My sister Dianne arrived from Florida on Wednesday night and has been at my side ever since. I don't know how to thank her. It has been good for us. We haven't been great at keeping in touch over the years with her so far away and when mom died, her trip here was super short and I've missed her.

This week has been full of so many people reaching out by text, phone calls (most of which I don't answer, cause I just can't talk) visits, gifts, cookies, meals and so much goodness and love. In the midst of every visit and gift giving, I stop inside myself and say I don't want me being the one in this position. How is this me? How can I be having this conversation and it's about ME?

I'm having trouble accepting that this is my new life. It's too early, of course, but I haven't found my new normal.

Every decision is too hard to make. My brain is forgetting so many things. I'm having a hard time focusing.

I talked with the nurse yesterday about the "tumor board" where all the oncologists, surgeons, etc. meet to discuss my treatment.  They all agreed that what I am doing now is the best plan.

So today is Thursday. I started last Thursday on Tamoxifen which is the hormone blocker. It's supposed to block estrogen from feeding the tumors. I take that everyday for as long as it works.
I started Monday on ibrance, which is a chemo pill. I take it for 21 days and 7 days off to let my white blood cells recoup and build back up and then I go again for another 3 weeks.  I don't know how long I will do this for?

So far, I'm feeling okay. I am extra tired and the nurse told me yesterday that was only the beginning. I will get much more fatigued as time goes on.

We are planning a last minute trip to Disney World.
Dianne's daughter Allyson, works for Disney and gets us 3 days free. Also half off of 2 nights in a Disney resort hotel.  She's also working on some free passes to Universal so hopefully that will pan out. We found awesome rates for our plane tickets.

A dear friend gifted us a large amount Disney gift card which is just a blessing and so generous.

This trip  has added to the stress to plan all this to leave next Tuesday, but we're hoping it will be just what our family needs. Some time away from reality. Time together. Time making memories with our sweet girls. I so hope it's not the last. I will have to be extra cautious. I will be that one wearing a mask so everyone can look at me as a germ-a-phobe. Using the sanitizer, etc. But they really don't want me getting any kind of infection as my body can't fight it as well.  I hope that I feel okay while we're there. I don't want to make the trip hard for my kids.

I have received priesthood blessings and many prayers. I think I can honestly say that the prayers are sustaining me. The first few days were too hard to me to do alone. It has been too much for my brain to process and I feel like the prayers are holding me up and helping me deal with this. Kevin has been my rock, even though, I know he feels so terrible and weak as well.
We have survived a week with the worst news and we will keep going because we have no other choice.
I'm trying to be positive and the prayers are helping me from going to that dark place too often. The place where I feel that all is lost and none of my dreams will come true. The place where I leave my best friend and my sweet children to fend for themselves. To grow up without their mom and wife.
I sometimes still go there, but I know the prayers are helping me crawl back out more quickly and not staying there.
I will fight and I know that being positive is a huge part of the fight. I am trying and hoping for that 20 years.

PET scan

Wednesday, March 20, Kevin and I drove up to the Huntsman Cancer Institute in Salt Lake.
Such a big scary building!

So we check in, and wait a minute and then they come out to get me. They tell Kevin he can't come back with me.  Neither of us was happy about that. We knew not in the scan room, but we thought he could be with me until the scan. Nope

So we go back and they put an i.v. in my arm and pump some radioactive stuff through my veins. So this is why Kevin couldn't come with me. I was radioactive.  After that, they have you sit in this very dim room and do absolutely nothing. No playing on your phone, no music no talking for 75 minutes! You can't really sleep cause they give you this giant nasty thing to drink while you wait.

So I'd been fasting and then this drink, and boy did I have to go to the bathroom! Finally they let me go and then we go into the scan room. They pump some contrast through my veins and move me in and out of the tunnel. It was only about 20 minutes and then they sent me home. And then the wait begins,

Honestly, I felt quite peaceful and felt like everything was going to come back clear and free (except for what we already knew)

Thursday morning March 21, Dr. Tittensor calls me.  "Do you have a minute to talk?"  yeah let me pull the car over.
Kristi unfortunately we found cancer in many places. It has spread to your liver and to some lymph nodes near the liver. and it has spread to many places in your bones.
Your ribs, your chest, your scapula, your arm your leg, several on your spine, etc.

Because you are now officially in stage 4, your cancer is not curable. You will have to fight this the rest of your life. You will not do Chemo or port surgery. You are no longer in a race, you are in a marathon. Slow and steady instead of fast and furious.

I thought I was devastated with just a breast cancer diagnosis, but now my world is turned upside down. I am not going to live as long as I thought. Possibly 5 years
My sweet girls may be raised without their mother. Kevin and I haven't had long enough together.

The next day we were able to talk to our Oncologist Dr. Esplin. He explained it a bit more and for now the plan is to put me on hormone blockers.  My cancer is ER+, PR+ and HER2- for those that know what that means.
I will take the hormone blocker and also another pill that is supposed to stop the tumor cells from dividing. I will also do weekly blood tests Then in a couple months I will do another PET scan to see if the cells are responding favorably to the pills.

If they're not, we'll try different ones....and so on.  Surgery is still a possibility down the line as well as Chemo.

For now I will keep my hair (I just chopped it off) I won't get chemo "sick"
I guess it's good. It kind of feels like pills aren't enough to fight this. But I guess they do.
The pills will put me in menopause so I will be having those symptoms. Fun huh?

My prognosis:  Only 22% live 5 years.  That scares me.
There are some that have been on these for up to 20 years. It's possible. Is it likely? No
Possible, yes.
I don't know how to even express all that I am feeling. I haven't accepted it yet and I don't really know how to accept it. I don't know how to talk to my kids about the realities of it. For now, they know that it has spread, but they don't know what that means. They are happy because I'm not going to get "sick" right now.
Maybe that's what we need. My girls need as much of me as they can while they have me. If I'm sick in bed, then they don't have me. ?????  I don't know.  I don't understand. I'm angry, I'm heart broken, I'm scared, I'm sad. I even feel guilty for doing this to my family. I know I know, but it's a natural feeling.

meeting my oncologist

It's been a few weeks since I've written. To be honest, I've been in a  daze of information and tests and changes in diagnosis and treatment, etc.

As a side note, I decided I should call it boob cancer. It kinda makes you smile when you say it as opposed to "breast"  Kevin said he can't call it that but I can.

Earlier in the day on March 13, I had my appointment with my oncologist. Dr Esplin.
I woke up that morning feeling positive and strong, and then on my way to the appointment, something just cracked and I was so irritable and on the verge of tears. Then we walked into the office and all I wanted to do was run away. I felt like I was in the wrong place. This is not the place for me to be! I am not one of these people!  We checked in and sat down and directly in front of me was the room.

The door was open and I could see into the room where all the cancer patients were sitting getting their cocktails of chemo.  Inside I was screaming. No I don't want to do that. I don't belong here. This is not real!

We finally got called back to meet with Dr. Esplin. He was really great and explained a lot of things and how treatment would go. He spent a lot of time answering our questions. We both feel really good about both him and Dr. Tittensor.  The only thing that was bad was when he checked my "boobs" while I was still sitting up and I just lifted up my shirt.  Don't you think it's much better when you're laying down so you don't have to look them in the face while they're checking any part of your body out....especially the private ones?

So we felt pretty confident with the schedule I would be keeping which all depended on the PET scan.

Later in the day, Dr. Esplin called to tell me the results from my biopsy.  The tests came back as inconclusive!   I know right?  Inconclusive????  So they thought there were some abnormalities in the cells, but they were so small they couldn't use the dye to detect the cancer, but they decided that with the look of my breast and everything else, they are going to move forward as if it is inflammatory.

So I was pretty upset and felt defeated again. Every time I start to feel hopeful that it's not as bad as I think, I find out it was even worse than I thought!  After my cry of self pity, I picked myself back up and waited for the the next test....a week away..... My PET scan.

My surgeon

We met with my surgeon, Dr. Jennifer Tittensor on Thursday.  Her name though.... I guess if you have that name, you kind of have to go into that field right? 

She was great and explained things really well. It's just so much information that it's all muddled in my head.
What we know;
1- Chemo will come first.  I will do 8 treatments, 1 every 2-3 weeks.
2- port surgery for chemo on March 25
3-Pet scan to check my whole body to see if cancer has spread anywhere else
4- The order will go Chemo, Masectomy and then radiation.
5- Tumor is Estrogen and Progesterone positive (this is good) and HER2 negative (also good)
What we don't know:
1- Dr. Tittensor took a biopsy of my skin because she is still concerned it could still be inflammatory breast cancer (the bad one)  She said it just has the appearance that it could be. I will get the results tomorrow.
2-For sure I'm a stage III, but not sure where within stage 3. Depends if it's inflammatory or not and if the PET scan finds cancer somewhere else, it's a stage 4
3-The treatment order may change if it's inflammatory. So that's still a bit up in the air.

I'm super scared, mad, depressed and a tiny bit hopeful depending on the moment.

The diagnosis

The doctor called with my official diagnosis.  The good news, I guess, is that I don't have inflammatory breast cancer. The bad news is that I have Invasive Ductal Carcinoma. It has spread to my lymph nodes. We don't know yet what stage and if it has spread to other areas of my body. Oh please no.

The good news is this is the most common type of breast cancer. The bad news is this is breast cancer.
I have been trying to process it and it still doesn't seem real. I feel like I'm playing a part in a play. A very dark part in a very dark play.
The grade they gave is a grade 2. What does that mean?  Simply between a 1-3 on the abnormality of the cells. Mine are quite abnormal. Also, I read that it has to do with the growth rate. Not slow, not too super fast. Somewhere in between.

I spent all day yesterday on the phone. Some conversations with people I know who have gone through. One I talked with was very very bleak. She said while on Chemo, she went days sleeping and not knowing what what going on with her kids. I CANNOT do that.  I need my kids so much. I need to be a consciously involved mom. They need it. I need it.  Others I talked with weren't so bleak. Every one of them did say that Chemo is so wicked.


I have so many wonderful people that have already reached out. I am so grateful for each and every one of them. I just don't want it to be this way.  Part of me wants to hide in a hole until it all goes away, and part of me wants my friends to gather around me.

Today I meet my surgeon and will learn a lot more about my cancer and what to expect.

Not supposed to happen to me

I'm starting this blog as a way to process my own thoughts, feelings and information about the journey I am about to begin with IBC Inflammatory Breast Cancer.
Warning:  I'm going to be raw. All of my feelings unfiltered, laid out, raw.

I started worrying about my breast health a year ago when I felt that the tissue had changed. It wasn't so much a distinct lump, but something was different. After a mammogram and ultrasound I was sent on my way with the doctor just saying I had dense tissue for someone my age, but to keep checking like every woman is supposed to.
Fast forward to this year. The timing is foggy for me because I lost my mom on December 23rd. And I feel like I've been in some kind of foggy time warp ever since. Anyway, sometime after the funeral I happen to actually look at my breast.  I always check it in the shower and stuff like that, but I don't usually look at them. I'd been slowly noticing but not consciously, that the shape seemed to be even more different than before. And then I noticed the nipple. It was hard and completely retracted. I couldn't get it to "pop out."  My breast felt heavy and I began to worry.
Because of time dealing with mom's death and having a month full of sick kids, I didn't do anything until February of 2019. I also received a letter from the hospital that it was time for my yearly mammogram. So I made an appt. with my obgyn. Nurse practitioner Stephanie Miller is who I saw.
So I was sent to get a mammogram and ultrasound. This time I had to go to Payson because our insurance has changed. Last Friday, I went and again, they didn't see anything on either of those, but the radiologist was concerned about the look of my breast and also the skin had thickened. So he requested I get an MRI. On Tuesday, I went to Timpanogos hospital and got an MRI on both of my breasts. It was not too bad, but pretty uncomfortable. On my stomach, boobs hanging down, arms over my head. Ribs on a high hard surface. It lasted about 30 minutes.
So they told me to go home and I could call my doctor in the morning.  Doctor told me they did find a cluster of cells and she scheduled me for a biopsy the next morning. Yesterday I went and had the biopsy. I was expecting a thin needle being inserted and that was that.  NOPE! So the radiologist who they nickname the Breast GURU came in and told me my lymph nodes were enlarged as well as what he saw on the MRI.  So he found 3 places to biopsy. He said that my entire left side of my left breast was involved as well as my lymph nodes. It was a painful and uncomfortable procedure and took forever. I asked him if there were any doubts that this could be cancer. He said he was pretty sure that it is. I won't receive a positive diagnosis until the pathology comes back which will probably be around Tuesday of next week.
I laid there with tears and my support, Kevin, squeazing  my ankle.
This is not supposed to happen to me. This happens to other people, not me. 
I don't want my family to go through this. I don't think Maili can hear this news. I don't want my girls to have to worry about me. I'm supposed to be worried about them. I want their little lives to be normal. I don't want Kevin to have to go through this. He already does so so much for me and our family, all while not feeling well himself!
I'm not strong enough to do what I'm going to have to do. Chemo....lose my hair. Hair is a vain thing for me. I don't look good without it. Pain, nausea, surgery...masectomy. HOw am I going to feel about my looks then? Healing from surgery. Radiation burns, trips to the hospital. Drugs, more nausea, weakness and fear.
I so wish my mom was here. I need her. I need her to remind me that I can do this. She's not here.

I don't want to be pitied. I don't want people looking at me.
I'm scared. What if I die?  This kind of cancer doesn't have as good of a prognosis as others do. I'm not scared of death, but I'm scared for my family. They need their mom. His wife.

 I know that the Lord is in charge and everything will go the way it's supposed to, but I'm still scared. 
It's going to be a long weekend and wait to hear the news I already know. Just more information about what now and what stage and are certain hormones involved. etc.