Monday, August 29, 2016

Radiation Update: 7 left to go!

My 3 beautiful kids
I don't know what I was thinking. Radiation is a piece of cake? I think I'll spend the rest of my life comparing all physical ails to chemo, which is a shame. Radiation is a complete different beast, and yes in most ways it is a piece of cake compared to chemo, but radiation is. so. exhausting.

30 treatments. Stand up and then lay down 30 times. Up and down! That's how many radiations I'll be getting by the time I'm done. That many days I have to go in there. 30 treatments is a lot. Matt started going back work everyday and so it was the perfect time to jump into a better routine.  I am so lucky to have my mother- and father-in-law at my house everyday. Matt made a google calendar of all my appointments at the cancer center so my in-laws know when to coordinate and be at our house.  I tried my best to schedule radiation for the mornings or late mornings so we all could have some consistency. It's a 40 minute drive to my cancer hospital so it's almost an hour and a half of driving everyday. My father-in-law has been more than happy to drive me there after dropping off grandma to tend to the kids. It has become such a lovely little routine, we feel so lucky to have the help. When I think about what we would do without them here, I am stumped and become emotional. I really have no idea. Radiation has been very "doable" thanks to them. The kids look forward to seeing them everyday, it is so much fun.

I love returning home to big hugs and happy faces. It pains me to leave them everyday, but I think they know I don't want to go and I promise lots of one on one time when I get back. My oldest started kindergarten this week which is super fun and exciting, so we have added that to our morning routine as well as radiation. I think it's working out ok and now that I only have 7 left, I am very very excited to be done and move on with my life.

What are the side effects of radiation? Fatigue. I feel it so much more now, really everyday is worse. And if I do more physical activity (like exercise or even run errands) I literally can't move or keep my eyes open afterwards. Yikes. I thought 3rd trimester pregnancy fatigue was bad! I've been lucky enough to get a nap in mostly everyday. I'm working on going to bed earlier at night so at least I wake up feeling energized. But besides the fatigue, I don't feel sick at all. My appetite has really come back, I am so grateful for that. I think the chemo really has worn itself off. Yay!
My hair growth in one month
The only other side effect I am experiencing is the nice sunburn on my skin. I was and still am a little scared and nervous how much damage this will do to my skin. It looks and feels like a sunburn from my chest down to my ribs and all under my armpit and side. I also have a burn on my neck where the radiation is targeting the lymph nodes. I am very diligent using heavy moisturizer and aloe vera. Sometimes it feels dry, sometimes it feels more burned, so I switch off. Unfortunately I ended up with a small blister on my side. I can't feel it, but I have an antibiotic cream and special bandage to keep it covered so it doesn't rub on my clothes or get infected. It's not too bad. Just add it to my many other daily routines to manage the cancer treatment side effects. It truly never ends.

I really can't complain. Despite all these radiation treatments, I am feeling more of myself again and I see the light at the end of the tunnel. From here on out I'll live in fear of recurrence, but I'm learning that even that isn't the worse thing in the world. I feel so blessed and lucky. Isn't that strange? But I do. Everyday I am with my family means I am blessed. And I am not just here, I am getting well again and look forward to getting my strength and health back and hopefully run my household and take care of my kids full-time again :)

My cancer hospital has a wellness center that I have been taking advantage of since beginning radiation. I did a session of acupuncture to help regulate sleep (thanks chemo) and to hopefully improve the neuropathy in my fingers and feet. The chemo I get every three weeks makes my neuropathy worse so that didn't do much, but the acupuncture has helped me fall asleep and stay asleep every night. I used to have to take medicine to help me fall asleep, it was causing me anxiety and obviously affecting my life so I am so happy with the results of doing one acupuncture session. I recommend for stress and sleep issues, for sure. I have been getting lymphatic massages every week and learn so much each time. I do have some inflammation and swelling in my right arm due to having 24 lymph nodes removed and then doing all this radiation on top of that so I'm grateful I have a wonderful specialist who is treating me so the swelling won't get worse. I don't have lymphedema, I don't want lymphedema and I'm doing all I can to prevent it from happening to my arm! The third thing I'm doing at the wellness center is their POWER recovery program. I had a consultation with one of their doctors and exercise specialists to go over my treatment history and what I wanted out of this program. I wanted to have energy through radiation (and beyond!) and to get back some upper body strength since having lost so much from surgery. I did an assessment and they created an "exercise prescription" for me full of resistance training, cardio, and stretching. I have the next 3 months, everyday, all planned out for me and I'm so happy to start exercising again! There is a gym at my hospital with these exercise specialists so I've been going in twice a week and have been training with them and learning so much. Eventually I will get a gym pass and continue it on my own. It just feels so good to feel good and be able to physically exercise again. Yay!
Me and my cotton men's white T. Radiation has me so stylish :)
Matt and I took the kids up the mountains to a beautiful lake this last weekend. We enjoyed an afternoon full of playing in the sand and splashing in the water, all with the beautiful mountain backdrop. I stayed out of the sun and did very little, but the fatigue hit me hard by the time we got home. It's a shame I can't keep up, but I am working on getting healthy again so I can be there for my cute husband and kids.

I hope everyone had a wonderful end to their summers and are having good "back to school" experiences. I love you all and thank you for your continual prayers :)

Wednesday, August 3, 2016

Update: Radiation Begins

Getting ready to start radiation
Have you ever heard of the expression "flying by the seat of your pants?" This is me everyday (and it's a funny image). If you know me, you know I love organization! I love sitting down each night and looking at my planner and my to-do lists: creating new lists and crossing off items on the old lists. I think of things I need to plan in the coming days and weeks and move forward with organizing my plans and thoughts so life can go as smoothly as possible and everyone is happy and taken care of. My only talent is organizing! I love it. When I was first diagnosed and the night before starting chemo I organized and cleaned out my entire bathroom. For hours. Clutter and dirt bring unwanted stress and organizing and cleaning areas of my home gives me control over something negative in my life. It was a coping mechanism before and during chemo, but the months of chemo taught me to let life happen. I feel myself gravitated to other coping mechanisms or maybe just accepting my new chaotic busy life that I can only do so much to prepare for the next day or even an hour. Plus, I am so tired all the time, doing the minimum sure is enough for me. It was overwhelming at first, but I've learned that "flying by the seat of my pants" helps me feel less stressed. Not sure how, but it does! I guess I'm learning to focus on being in the present and in that day's moments, leaving little time to worry or spend so much time planning for things that don't necessarily need the attention. Coming out of this chemo fog is wonderful, but at the same time I'm trying to catch up with things. What did I miss out on all these months? What is going on, you guys? What's up? Haven't talked with you in forever? Oh we did talk, I don't remember.

I don't remember anything! Those months of chemo are a fog. I reread this blog and other posts and it feels surreal, I hardly remember writing or feeling these things. It feels like a dream or an out of body experience.

I'm not sure where I'm going with this (maybe giving excuses to why I haven't updated this blog), but to say that if you don't hear from me it's because life has been busy! Everything is going at 100 MPH and I'm trying to catch up (hanging onto the back of our 100 MPH life ((by the seat of my pants?)) Life has been crazy busy, but crazy good. There have been wonderful blessings and tender mercies this last month, I'm not sure where to begin!

Let's start with the question I get the most: How are you feeling since surgery?  I am very pleased with how well my incisions look and are healing, I have very little pain, and my range of motion is getting better and better everyday. I lay on my stomach and side now, and can pick up and hold Violet for longer periods of time! Feels so good to move around almost normally (reaching up high in kitchen cabinets, pushing myself up to stand, holding my purse over my shoulder, picking something up off the floor, driving, etc). My surgeon said 6-8 weeks recovery and I'm almost to week 6 and seeing and feeling improvements on a daily basis. So happy to have the worst part behind me!

Currently and moving forward with recovery, I am working with a lymphedema specialist, getting a lymphatic massage each week for the next month or so (during radiation treatments). I had one today and it hurt. Have you ever had a sore muscle? I'm talking painfully sore muscle? And you ask someone to massage the muscle, but careful, it's sore! Well imagine someone (what it feels like not what she actually did) pushing and squeezing that muscle as hard as they can! That's a little like how it felt today. The rest of it was very relaxing and I'm grateful for this therapist who is doing her best to help and educate me on how I can prevent lymphedema (I have about a 40% risk of getting it).
My compression sleeve and my new wig :)
 I didn't start doing daily stretches until 2 weeks after surgery because it hurt to lift or move or relax my arm. But I learned it's supposed to hurt and pushing it a little more everyday is how you recover. OH! So I did that.  My friend suggested I follow along with this video to help in my recovery, so I started on the two week mark.

How did I do? I cried hard as I sat on the couch and watched this woman do simple stretches. I felt defeated and mad and discouraged. How awful is it to not be able to lift your arm? I let me pity myself and then I got off my butt and did it...for 5 minutes. It hurt so bad. She was very encouraging and empathetic as she instructed in this video, I needed someone's empathy (thank you, Miranda Esmonde-White). Now I can do over 20 minutes of that video before I start feeling pain. The body is amazing, and I'm sure you've heard it before (I know I've heard it from so many people since my diagnosis): "attitude is everything". Recovering from cancer treatment is more work and just as hard as the treatment itself. It's a full time job.

The second update is starting radiation. Since I have (had?..have? I think I decided to say "I'm living with") inflammatory breast cancer, I was given the standard of care for IBC, the tri-modal treatment of chemotherapy, surgery, and radiation. What is radiation? Is it like chemo? I'm getting these questions a lot, cancer is such a huge part of my life I forget not everyone knows what I know (haha). Radiation is not at all like chemo, it's not systemic. But it is like chemo in the way it kills cancer cells as well as some good cells too. Remember the high dose radiosurgery I was going to have? What I'm doing now is not that.  There is also radiation that is placed inside the body where the person needs to be quarantined because they are radioactive. I am grateful that is not my kind of radiation, I am not radioactive, you guys! There are many different kinds of radiation for different cancers for different parts of the body, different radiation oncologists with specialties, etc. I am being given a low dose of radiation to my chest, armpit, and the nodes up towards my neck on just my right side. It's a low dose, everyday for 30 treatments (minus weekends and holidays) which comes to be about 6 weeks. Have you ever gotten an x-ray? It looks and feels a bit like that. Before starting radiation, I went in and made a cast of my upper body laying with both arms up over my head and me looking to the left. The radiation is focusing only on my cancer side, but I needed this cast (and 5 tattoo markers) so I can line up with the machine the same way each treatment. My doctor took a week to "map out" my radiation plan by looking at my scans as I laid in the cast. 

Trusting these doctors and technicians to line me up the right way everyday when receiving radiation was hard the first few times, but I'm getting use to it now. I was extremely nervous something would go wrong and the radiation beams would hit something they weren't supposed to. I trust them, they know what they're doing.

I've had 5 treatments so far. My nurse said it takes 2 weeks to notice the changes in my skin and the side effects of being tired. Luckily this radiation isn't to my stomach (I don't get nauseated) and will hopefully miss my other organs (like part of my liver and lungs and throat) so I don't feel any other side effects. That's what they say, but after my first radiation I was extremely fatigued, nauseated, and felt dehydrated. I found that an odd coincidence, but it improved over a few days so maybe it was the lingering side effect of not being fully recovered from chemo. Who knows these days. The radiation department at the Huntsman Cancer Institution is a big area that is buzzing and is a "happening" place. It's a change of pace that took me a while to get used to, but I like it. I now find my way around the radiation oncology department (I used to get lost finding the dressing room). I change into a robe, put my stuff into a locker, and go into the waiting room. I use the same radiation machine everyday, it has to be that specific machine. There are a few other women who are there everyday like me that I get to see and chat with. I haven't mingled in person with other cancer patients so it felt good to experience it all with other women too. We all have breast cancer and are being treated by the same doctor on the same machine. These women drive from out of state or over an hour to go to radiation, puts my 30-minute commute to shame.

When it's my turn, I enter the big room with the big machine to receive the radiation. They have my cast ready and I lay on my back, raise my arm and turn my head into the right place. They line me up just right. From the ceiling shines down a light in the form of a measuring tape and they use that and other lights to match up the markers on my skin to the exact same spot. I hear the technicians say to each other "3mm to the left" and then move me ever so slightly.

Being that accurate scares me. What if I sneeze! I'm afraid to take a deep breath. I second guess my position and want to make sure I'm set up right, but also so afraid to move at all. I'm not allowed to move. My friends who have gone through radiation before helped me learn to meditate and relax. I hate feeling so helpless lying there, being lined up to receive this cancer treatment. I feel so foolish sometimes, I don't want to have cancer! I don't want to be there, I don't want radiation, I don't want any more side effects and I don't want to leave my kids everyday. I do not like green eggs and ham, I do not like them Sam I Am! (sorry my 3 year old is obsessed with this book so it's always stuck in my head.)

So I'm lying there, feeling vulnerable with my flat chest all lined up for radiation. The technicians leave the room and start the machine. It moves up to my left (the way I'm facing). The machine is at least 2 feet in diameter and I watch as it adjusts to the right position. Then for about 30 seconds I hear  a fast "click click click click..."

I close my eyes and imagine I'm at the beach or Matt is embracing me with my head on his chest...

and then the machine moves to my right, I can't see it but hear the whirling noise. I want to peek to see it, then I panic because I'm afraid I'm going to forget and accidentally move. I close my eyes again and breath slowly, imagining hiking on a beautiful crisp fall day and watching my boys explore trees and streams throwing rocks...

Then that's it! The technicians come in and move me out of there and I get changed and get to go home. It all takes about 10-15 minutes. I feel nothing (like an x-ray).

I'm sure in a week or two my skin will start to look like a sunburn and will only get worse. I have creams, oils, aloe, and lotions I'm already using to hopefully prevent any really bad skin effects.

I've been very diligent, trying to protect my skin the best I can.

Many have asked me why I need radiation since I had a complete response to chemo. It's tricky explaining this, and I wish it wasn't this way, but just because we can't see cancer in a scan, it doesn't mean it's not there. And just because the pathology report came back clear, it doesn't mean the cancer is going to stay away forever.  

I checked out a few books describing cancer to children and I particularly liked this book's way of explaining it. Cancer plays hide and seek. The cancer is hiding and the doctors try and seek it. We can only find cancer when it grows big, either from seeing it in a scan or feeling the tumor in your body. 

Just because we can't see it, it doesn't mean it's not there. The idea behind radiation for me and other women with IBC is to "mop up" any remaining cancer cells whether there's any left or not. This is a big part of the tri-modal treatment and without it, all the work chemo and surgery have done would be undone. Radiation helps lessen the chance of recurrence. Since IBC spreads to the skin, I get the full blown radiation, the most any breast cancer patient can get (just like chemo and surgery, again... IBC is the breast cancer you don't want). I remember reading a statistic early on in my diagnosis that the recurrence rate in IBC if radiation was not done was 90%. With radiation the recurrence rate (with stage 3 IBC) is still high at 60%. Those numbers give me the chills. IBC is the highest metastasized of the breast cancers and is the least funded and researched. Since I was diagnosed in January the Inflammatory Breast Cancer Network Foundation has made great strides in causing awareness and raising funds to support researchers and doctors and other IBC specialists. Terry Arnold, the founder of the IBC Network, runs the site and an an online support group with over 500 women who have or have had IBC. As much as I don't want to be part of this group of women, I look up to many of them, I've sought out advice by those more knowledgeable and experienced than me, and I'm grateful I have connected with many other young moms like me who were recently diagnosed with IBC. We share and support each other, they've become very special to me. If you want to fund a breast cancer organization that uses 100% of it's money for research, fund the IBC Network Foundation.

In summary, I'm doing well and plugging along. I'll continue to have radiation everyday until the beginning of September, I have my Herceptin/Perjeta infusion every three weeks, meeting with my oncologist for blood work every 9 weeks, and I'll continue working with my physical therapist.  I have been blessed with a wonderful mother- and father-in-law who have moved back to the country and devoted their time to helping out my little family. With them in our home, tending to the children and driving me to appointments, helping out with whatever else is needed in our home, Matt is able to go to work and I'm able to take care of myself as I recover through these radiation treatments. I have big plans to get strong and healthy again so I won't need so much help with my three little ones, but for now the kids are so happy to have their grandma and grandpa over everyday. I like to think my little Violet is lucky to have "two moms" as me and her grandma take care and enjoy her every day. I am trying my best to see the glass half full, make lemonade from lemons, etc in this situation. I believe it's from all the prayers coming my way. I know it's not coming from me, I am most definitely getting help from a loving Heavenly Father. I feel guided and directed and comforted. I know in my heart this situation is temporary. I know that because it is temporary (awful though it may be) I can still enjoy this time and appreciate all the good around me. There is so much to be grateful for in life and I am lucky to have seen the love and kindness from so many.
My boys and I made a paper chain to count down each day I get radiation.