Friday, June 17, 2016

A Surprising Phone Call

Remember my post about having radio surgery on my liver? I wrote how nervous I was, I even posted on Instagram and asked for prayers. I've felt a sense of calmness all week, ready to move forward with the next step of treatment since I finished chemo. I was ready to kill off part of my liver so the leftover tumors would stay away forever. I was ready to do whatever it took to say I am cancer free.

Last night (Wednesday) I got a phone call from my radiation oncologist telling me he has good news for me...he can not find the cancer.

My liver is cancer-free.

What?! Let me explain how this happened...

I went in on Monday for for a consultation with this doctor at the Huntsman Cancer Institute who specializes in SBRT. My parents drove up from California to spend the day with the kids, and Matt and I were ready to spend the morning doing all the prep work. Meeting with this doctor and his resident, I felt so great. They thoroughly went over the plan with exactly how this treatment works and explained its great success rate, they even mentioned the word cure a few times. It felt as if they gave me the boxing gloves for my next round. Half this cancer battle is mental, these doctors know how to insert hope and I'm grateful for that.
I found my escape place at the Huntsman, here Matt and I sunbathed when we had about 45 minutes between appointments :)
Of course he gets a nap in :)
So onto the prep for radiation. This was a bit gnarly. While listening to Frankie Valli and the Four Seasons in a dimmed room, I laid on a body-sized bag that felt as if it was filled with sand. I wiggled my body to get it comfortable and 3 medical technicians pushed up the bag of sand all around me from head to toe. As they did this, the bag hardened around me, shaping to my body. Then what looked like saran wrap and another few bags of sand were laid over me and wrapped around me from the belly button down, with my hands underneath it all. It was oddly comfortable, thankfully not claustrophobic since my chest or face wasn't in the mold or covered with that stuff. In this position (my body mold, ha!) they gave me a tattoo marker (ouch, thanks for the warning) in the center of my upper abdomen.  My doctor wanted to do another detailed scan of my liver since the last one was in May, about a month ago. So in this position, I went through the CT scan with a very strong dose of contrast leaving me a bit dizzy and disoriented. That was it!

My doctor told me he and his team need a week to plan and map out how they will do the radiation and I was scheduled to get my first of three of these treatments starting the following Monday. So I came home, relieved that part was over and got ready to enjoy the rest of the week with my family with no more doctor's appointments.

Wednesday evening I was driving with my family to Andrew's t-ball game when I see I am getting a phone call. I answer it and am surprised that it's my doctor. I wave to Matt and the kids to be quiet!

Is this a good time to talk?
Yeah, but I'm in the car.
Are you driving?

This isn't a good sign, I thought.

My doctor went on to tell me he had good news. He said he's been looking at my liver a lot -- "well not 24/7, but a good part of the last few days" is exactly what he said. He concluded he doesn't feel comfortable doing this procedure because looking at my scans from Monday, he isn't sure where the tumors are. He isn't sure where the tumors are because there are no tumors. Not only could he not see any cancer, he couldn't even see the trace of where they were.

I was shocked. I was not expecting this. I didn't know what to say or how to respond. I didn't know what questions to ask or where to go from there. I was in the car on the way to a t-ball game, telling my son to put his socks and shoes on and we were talking about what we should do for dinner afterwards when my doctor called and told me my liver was cancer free. The scan was clear.

Remember the photos I posted with the measurements of the tumors? The shaded gray areas of cancer? Well, good news, they're gone! This was the news I wished I had gotten in May, but I guess it took the last of chemo to wipe it clean. This was why I did chemo, this is what I've been working towards for the last 6 months!

It hit me later that night, after the game and dinner and bedtime, when I could finally sit quietly and reflect on the meaning of it all. Not only were hundreds of people praying for me this week, my sister-in-law started a 40 day fast for me. This fast started last week. Since the first day of the fast I haven't felt sick. Literally the day before I was in bed all day, I had a constant bloody nose, no appetite, and an all-around sick feeling. The day the fast began, I felt like my old self. I did so much and not only was I feeling better physically, I was in a better place mentally. I was HAPPY! When you go from sick and sad to healthy and happy so quickly, I thought about what was different and why. I know the fasting is helping me. And then to get a phone call from my doctor to tell me (he was surprised as well, too) that after all that work and prep and doctors on my case, they don't need to do radio surgery treatment after all because there is nothing to treat...well I'd say that's a miracle.

So what now?

I talked to my doctor again today and we decided we most likely will do some sort of radiation to my liver (to get any microscopic cancer cells that can't be seen in a scan), but a very low dose over an extended period of time, not radio surgery where part of my liver dies. There are lots of options actually, and so we are going to wait until after I have my surgery and recover a few weeks to have another scan and think about the best option for me. My doctor told me today "there is less cancer to work with so this is bad news you want to have". I couldn't agree more!
<<If you want to participate in the fast for me click here to sign up for a day. Matt's sister posted these instructions on Facebook.

          Dear family, I wanted to give you all the chance to participate in the 40 day (or more) 
          fast for Lisa. The idea is to have one person fast for Lisa every day for at least 40 
          days. The fasts start at 6pm mountain time every day and end 24 hrs later. There is 
          so much power in fasting and so many blessings that can come from it.
          June is all taken, but we need to fill up July! When you sign up, please give me some 
          contact info--phone or email. If you give me email, don't put in the @, just leave it out.
          Also, the day you sign up for is the day the fast will START. So, if you sign up for 
          Sunday, you will be starting on Sunday night and fasting through Monday.

Thank you to all who are participating in this! Fast and pray for this medicine and treatment to rid my body of this disease once and for all. Pray to receive strength and the ability to endure. Pray for knowledge because sometimes I'm not sure what to make of this whole thing and the decisions we have to make sometimes feel heavy. Pray for Matt. Pray the kids will keep thriving and smiling and being themselves. I know Heavenly Father is very mindful of me and I have felt the peace and comfort that only He can give. Since I was diagnosed I looked to anyone to tell me my future, to tell me what they know will happen. It was an extremely hard to come to the realization that no one could tell me with certainty that everything is going to be ok, except for my Heavenly Father. Throughout the course of the past 6 months I reminded myself of the blessing Matt gave me and the feeling of "everything is going to be ok". I've been holding onto that feeling, trying to figure out exactly how I am going to be ok. I strongly felt today the most memorable, best, and important days are ahead of me and that is something I can look forward to.

You guys! I got a clear scan AND I get another full week of no doctor's appointments or chemo. This is my last week before surgery and we're going to make it count, cramming in as much summer stuff as possible :)

Thursday, June 16, 2016

I Finished Chemo!

For almost 6 months I was put through the misery of getting myself pumped with poison. It's very hard for me to process that it's been 6 months, my brain thinks it's somewhere in late February. It's June! And I did it! 16 times I sat in the infusion room. 16 times I endured the side-effects of this harsh chemo. 16 times I had to leave my children and spend half the day at the hospital getting medicine. SIXTEEN!
I gone, done did it!

It's taken me a bit to process how I am going to mentally move on from this. Having an aggressive and late stage breast cancer means treatment for life. It means this isn't it for me as far as treatment goes. That is a hard thing to accept. I hate thinking about it.


I decided I am going to celebrate and be happy that I finished this chemo (WEEEEE!!)! Instead of being sad that I am stage 4, I choose to be happy and optimistic that I am all done with chemo for a LONG LONG LONG time! It's a waste of time and energy to sit and worry about a future that is so uncertain. Let's celebrate instead!!
My friend Jen sat with me during my last chemo. My nurse asked if I wanted to ring the gong. Patients ring it when it's their last chemo. I wouldn't have done it if Jen wasn't there, I wasn't emotional or anything, but knew that I should make it "a thing" so I rang the gong! Yay!

I came home to this sign and the kids greeting me outside. I love how specific this sign is, love my engineer husband's mind, haha.
I spent a day shopping! It feels so great to get out and feel normal :)
This last half of chemo has been hard. I. Am. So. Tired.

Chemo feels as if the life is being sucked out of you. Death felt very close, in a dramatic way, but I'm not sure how else to describe it. Your body slows down week by week, your brain checks out, and sometimes you have no strength or even the will power to stand up and walk across the room. You feel sick. You look sick. You can't sleep it off or do anything to get better, you just have to endure it. Blah.

When I met with my radiation oncologist for the first time, he asked me "How are you doing this? How have you have managed all this chemo with 3 little ones?"

I pointed to Matt.

Matt has done everything. He takes care of me, letting me sleep or play with the kids or go for a walk or make dinner or be sad or be goofy or be lazy or be productive or anything. I have this stress-free freedom to do or not do or think or not think.

I get to be.

We've been at this for about 6 months now and Matt gets it. The best advice we've been given and from our experience when someone is going through cancer treatments, especially chemo, is to let that person do whatever it is they want to do. If it's staying in bed watching tv all day? Great! If it's organizing the linen closet? Awesome! If it's chasing your kids in the sprinklers in the backward and then walking to the store to get ice cream? Go for it!

Again, the biggest blessing has been Matt being able to work from home. I am ecstatic to be home with the kids again so Matt can go back into work. I'm not sure when that will be, but I'm starting to see the light at the end of the tunnel!

I was thinking how this happened so suddenly, so out of the blue. This cancer diagnosis smacked me in the face and changed my life forever. It scares to me think of those I love and how this can happen to them. We shouldn't live in fear, but we should educate ourselves and do all we can to live a healthy lifestyle so we can prevent any unnecessary diseases, like cancer, although in most cases it can't be prevented. (the only research I've found to link breast cancer to lifestyle is in postmenopausal women and being overweight since estrogen lives in fat cells and breast cancer is sometimes fed from estrogen...but this doesn't apply to premenopausal women (like me!)) Even the healthiest and those without a family history (like me!) can get cancer. It's more likely not to happen, but from my experience... it can happen. Cancer can grow or begin to grow and our bodies' immune system can stop it. We can help our immune system to be strong to fight off potential cancers. I'm educating myself on how to do this, for me and my kids.

Thank you to everyone for the outpouring of love and support during this tough time. It's a little unknown to me how I'll be feeling this summer. I have surgery (a bilateral mastectomy with the cancer side being a modified radical mastectomy with axillary lymph node dissection) on June 27th and begin daily chest radiation for 6 weeks starting the last week of July.

Oy vey!

I have a very good feeling that despite a heavy treatment load this summer, I will be able to enjoy myself and make memories with my family :)
This is what I looked like from last November and every month since. Now hoping to do the same, but in reverse order :)

Monday, June 6, 2016

An Update: Abdominal CT Scan

Waiting to meet with one of my radiation oncologists
I had my first CT scan since the original one. Oh boy, I am grateful I didn't do this sooner. I know why my doctor had me wait towards the end of chemo. Scans are the worst! Getting a CT scan isn't so bad, but the anxiety! No thanks. But this is my life now. It's hard to accept sometimes, it's weird to think I'll be getting these scans every few months for the rest of my life, but it is what it is!

About midway through May, I had a morning full of chemo and then 3 hours fasting before my scan that afternoon. I had to drink about 6 oz of the "berry" contrast every 15 minutes 6 times. That's two of these...
 I was feeling yucky, but I had my sister and nephew and some lovely weather to keep me occupied during this time.
Getting a CT scan takes less than 10 minutes. The only prep is fasting and drinking the contrast liquid. You don't need to change into a robe or even take off your jewelry. After lying down on the bed, they set up an IV (or can access your port). Once you slide through the machine, a technician attaches your IV to the CT contrast (don't remember the fancy name). I laid still with my arms above my head, the technicians in the other room, behind a glass window. I can hear them on the monitor telling me they're going to release the contrast. I feel it. It feels like you just drank a hot drink, but from your head to your toes. It goes fast, like 3 seconds which fills your bladder and makes you feel like you peed yourself. Then they slowly move you through the machine. Then they do it again. And you're done!

I only had an abdominal CT, not one on my chest. The way my cancer grew in my breast, it's hard to really see on a CT scan, plus the major lump that was there is obviously gone so there isn't a need (unless there was a need, but there is no need, need!)

Here's what my scan revealed on the state of my liver:

The bigger tumor shrunk almost 90%
The smaller tumor shrunk almost 100%
My doctor said when he presented it to the tumor board, one oncologist suggested what we see in the new scans may be just scar tissue of where the cancer once was. One can only dream.

I attached photos to compare the before and after. The first pair you can see my stomach to the right and I apologize for the pixely image. This is the one I had biopsied because it was easier to get to.
Here is my bigger tumor. You can see the gray shaded area, my doctor measured the diameter.
 And since you just saw my cancery insides, here's a better photo of me and Violet before my appointment with my doctor (I love bringing her with me!)
I was happy to see such a big change in my tumors from all the chemo I endured, however this was a hard appointment for me. It was a reality check, a reminder that yup, I have stage 4 breast cancer. It's in my liver. It's been there growing for whoever knows how long before I had my initial symptom of a rash. I hate this so much. I hate that I'm stage 4, it's the worst part of getting breast cancer. It's every woman's fear when they get breast cancer, that it spread (blah, let's not get into that right now).

 "The horse is out of the barn" is what they say when you have secondary, metastatic, stage 4 breast cancer. The spots on my liver are so small that there were and are no side effects, which is something to be grateful for. Knowing my cancer responded to chemo makes me feel confident in going forward to the next stage of my treatment: Surgery and Radiation.

So the plan from the beginning continues. My doctor and I talked about having stereotactic radio surgery (or cyber knife) to those two spots on my liver. This is radiation to my liver, a very high condensed dose to target those two spots, like a little laser that kills all the tissue it touches. This is the best alternative to having surgery. Essentially, it has the same effect as if I had surgery itself.

In a week from today I go in to see a liver specialist to get started with radio surgery. I'm extremely nervous, I don't know what to expect or how it will feel. All in all I am feeling brave, I feel confident in my aggressive treatment plan, I am proud of my body for taking a good pounding from chemo and still ready for some more. 

Bring it on!