My radiation oncologist did tell me that the effects of radiation would continue for five days past my last treatment, and, he was correct. The most intense burning, heat, and true pain was at the worst on day five. How people go though radiation with blisters and open wounds or scabs, I have no idea, truly. The amount of “discomfort” would be phenomenal! Please, take a minute and think about the different areas of our body that cancer can grow and radiation could be needed….I spoke with a woman whose mother had vaginal cancer and needed radiation…there are no words. I will say it again, I am lucky to have this specific type of cancer.

In case you forgot I had all my lymph nodes radiated but the mammary ones because they were too close to my heart. The larger area radiated, my breast, back, and armpit started to peel last week end. I went to bed with a blood red, fire breathing patch of skin and woke up to a snake shedding its skin.

It was pretty disgusting if you would like to know. The skin fell off in pretty small pieces and all while being asleep. Scott and I got out of bed that morning and I started screaming. That flaked off skin looked like a million little bugs had tried to attack me while I slept. Since I had not removed my shirt I had no idea it was my skin. Let’s just say I didn’t need coffee to be alert that day.

As the skin started to fall off the heat went away with it. It felt like my skin had been holding it’s breath too long and could finally breath again. In the image above you can see it started to peel under the armpit and just below my implant. My clavicle is a different story.

My clavicle area was the least bothersome location out of all the treated areas. First, nothing really rubs against it or touches it. Second, the skin doesn’t get moved with every movement. However, it did not want to heal. Once the skin began to peel off of the radiation burn it looked like the image above. Now after the skin fell off it started to hurt. I could feel my heartbeat in it. Emery had some silvadine cream leftover from a burn she had so i started to put that on the darn spot. Thankfully this finally helped it start to heal.

Above are pictures of the two areas I took yesterday. It is clear to see that they look pretty darn good. There is still discoloration across my side, armpit, implant, and chest but, no open wounds. Scott said last night he feels like I am doing “too good” with this whole cancer thing. Everyone else we know with cancer keeps getting infections, needing additional injections, or is failing to the point of needing hospitalization, then there is me. I think there is a little fear that if everything goes well again the shoe will drop at the end of this.

The big question is why did my skin do so well and others does not? No idea. Of course, I tried my hardest to everything I could to help my body heal from the inside out. I drank a ton of water. I slept like a hibernating bear (umm, let’s be clear, still doing this one). I ate as many vegetables as I possibly could, then I made vegetable soup, in 104 degree weather, and forced myself to eat more. I lathered on lotions before the radiation even got started and reapplied multiple times a day. Take your pick, any one of those things could have been the reason. Then again it could just be that I am young and healthy. Well for a cancer patient!

If you are reading this and are going through radiation here are the products that I used on my skin. I purchased everything on Amazon because it was cheaper but you can find these at any Walmart or Target. They are linked directly to what I purchased (I am now an affiliate so will get a small commission if you do purchase them).

Aquaphor

Lanolin

Silver Gel

Dove bars of soap with no dye or scent

Pack of Men’s tagless extra soft breathable BLACK shirts - big enough for me to stretch on and not have to tug, breathable for the heat to escape, black so that I didn’t look like I was participating in a wet t-shirt contest that had one contestant 24 hours a day.

Saran Wrap - if you don’t want to wait for the lotions to absorb you can wrap yourself with this. I didn’t do this until week 4 and only then because I wanted that cream to stay on longer.

Heart pillows (from mastectomy) or small pillows to place under your arms so skin is not touching or rubbing. I now have 4 of these pillows, I LOVE THEM!

Medical gloves if you don’t like touching sticky creams. I didn’t use them but it got to a point where I couldn’t move my body to reach all the areas that needed moisturizing and my kids had to have the gloves to help me.

Hydrocortisone cream - your skin starts to itch like a bad case of poison ivy. Made the mistake of gently scratching my chest area and ripped off a chunk of skin. Only did that once! I carried this in my purse or pocket at all times once the itching started.

Yesterday Scott shocked me by asking if I realized that we had entered month 16 of my fight against cancer. Could it really be month 16 already? To date I have had 9 surgeries, 19 rounds of chemo (and counting), and 25 radiation treatments. I have lost both my breasts, my nipples, my armpit lymph nodes on the left side of my body, and my hair. It is still hard to wake up each morning and remember that this is my life, so far from the one that 17 months ago I was living. Instead of focusing on what was I am trying to celebrate every small miracle that is granted to prolong my life and yesterday one of those milestones was met.

I have not written often over the duration of my radiation treatments. Truthfully, I don’t know what to say. Each day, five days a week, I go to the office, change into a hospital gown and sit in a waiting room full of other patients, all with cancer. Some days one of the patients wants to lament the fact they have cancer, other days a patient wants to tell their story, but most days we all sit and wait in silence. Once your name is called you walk into the radiation room and lay down on a hard metal table with the machine above your head ready to administer the treatment that might finally annihilate the cancer cells in your body that want to kill you. After your treatment is done you go back to the waiting room, change, and go home. There is only one exception to this routine and that is when the oncologist checks your skin to ensure it is still safe to radiate it. It is monotonous.

Radiation does not bring about an instantaneous side effect, like chemotherapy. Instead it takes weeks of being radiated daily to start to “see” how your body is handling the treatment. You are lulled into believing that your skin can take it because of this delay. I am pretty sure no one can get away unscathed from radiation. Below is how my skin looked at the beginning of each week of treatment. The X at the top left of my body is a sticker that they use to line me up with the radiation grid before each treatment. This is not a permanent tattoo like the dots on my body in previous posts. Most often they call the X your tumor marker.

Pictures do not capture exactly how discolored my skin got nor does it show how intense the heat is from the burned skin. In a post on social media I explained it as feeling like the entrance to Hell was through my armpit. To a friend I described it as having Satan sitting in my armpit. Either way my armpit and chest HURT. The pain is definitely getting worse. Over the past three nights I have been moaning so loudly in my sleep that it has woken Scott up. Last night I moved and the pain was so intense it woke me up.! Below is my skin after round 23.

With the pain intensifying it gives me great pleasure to say that I am officially now done with radiation and I have the diploma to prove it!

With how much I disliked radiation treatment, there was one component that I loved; my radiation technician team. Over the months and months of cancer treatment I can’t think of anything I would label “fun” but seeing them each day made it fun. They are going to forever be in my heart. I made them cookies and wrote them thank you cards but really that was not enough. When they came to get me from the waiting room they were signing “celebrate today, come on!” while clapping and dancing around. I am really going to miss them.

I want to feel some sense of finality but I am beginning to understand that it might never come. Cancer is a fight to survive. During that struggle you straddle the line between life and death as you consume every medicine or treatment in pursuit of adding days, months, or years to your life. I think that there is never a feeling of being done. So instead I will keep doing what I can and celebrating each milestone.

During my younger years two a days meant I had a swim practice in the early morning and then again in the late afternoon. Sometimes there was dryland training before afternoon practice too. The practices were challenging and I didn’t always want to be there, but I went. I can attest that anything you do twice in one day is tough but right now I would gladly jump in the pool as the sun is waking up and setting than another set of radiation and chemo on the same day. Thankfully I am close to being finished with the 25 rounds of radiation, so today should be the last time I have to double up on treatment.

When I started to research what to expect with radiation numerous women informed me that they chose not to work during treatment. There was no one constant answer as to why but all of them circled around how their skin felt and how they felt physically. I, of course, decided I could handle it just fine and instead kept up my normal workload. If you are following this blog then it is blatantly obvious that I am not able to keep up with life. Once I am done with my work, family, and the house I sleep. All the time. Scott and I were trying to keep track of exactly how much I sleep in one day and I think it is close to 15 hours.

My skin is holding up okay so far. Over the past few weeks they have changed my topical creams twice. Right now I am using SilverGel. It seems to be working better than aquafor, lanolin, and aloe vera. Fingers are crossed that my skin holds for the last five treatments. If I start to get open wounds then we will have to postpone the last sessions. I do not want to do that.

As for chemo the last round seemed okay. I felt tired. Shocker. I also had constipation really bad. So much fun. This medicine is making me feel sicker than the TCH. There are lots of drugs to help with the side effects which I am very grateful for. I do not want to vomit. I hate vomiting. Not sure if things will be the same after I get the infusion this afternoon but fingers are crossed that all goes well and the side effects stay at a minimum.

I have finished up week two of radiation and all I can say is the sooner it is over the better. Life feels like I am living inside a mud pit. No matter how hard I try to move faster, I can’t. My body feels like it is in slow motion. I feel a little out of body over the sensation because my mind, at times, seems to be moving at normal speed. I don’t know but the tiredness is not getting better as the chemo side effects settle in my body.

As frustrating as it is to fall asleep without attempting, even in the middle of a discussion, I am beginning to embrace it. My body is a hot mess, literally. I’m in bed by 6 if I am home. If not then by 8 at the latest. I might not like being sleepy but this past week has set me straight. I need a nap. It is a bit like having a newborn baby, but I am the newborn….

The patient waiting room at radiation is also not my cup of tea. First I am the youngest person in there by a solid 15, maybe even 20 years, and all these people do is complain about getting cancer. It is reminiscent of the breast cancer class I had to go to after my bilateral mastectomy. I know it is wrong of me but I want to slap them. Am I sorry they got cancer? Yes, yes I am. But it is hard for me to sit and listen to them complain that they may not get to see their grandchild graduate from college. No joke I sit there trying to tune them out because if not I am afraid I will scream at them…obviously I need to start doing more yoga.

Later tonight I will snap a picture of my skin after week two. So far it looks okay but I have been warned side effects don’t show up until week three. Guess next week things are going to start getting dicey.

As much as I want to do everything in my power to kill every speck of cancer in my body, I have been dreading the day that cancer treatment started back up again. The first time I did this I had no idea what to expect. There is something to be said about going in blind. I know how I am going to feel and I hate knowing that soon I will be worn down again. Adding radiation to the equation, and at the same time as chemo, means that the side effects are going to be more pronounced. I can tell you that Friday was a very, very long day.

In the morning I had my radiation treatment. When I got home I fed the kids and immediately fell asleep on the couch. My mom came to pick me up for my chemo at 1:15 and subsequently woke me. When I say I am tired I mean it.

Scott had a meeting so my mom waited with me until he could get to my appointment. With this being the first round of a new treatment I had to be monitored during and after the infusion. All that means is that the appointment was real long.

There is no way to prepare for chemo, especially when I knew what was coming. But I will say that I had worked it out in my head that this was still not going to be “as bad” as traditional chemotherapy, after all, it was a targeted chemotherapy treatment. I was wrong. When the nurse had to put on her hazmat suit (what I call the garments nurses have to put on when handling chemo meds) to get my medicine started I almost started to cry. I just really, really want this not to be what my life is. I really want to not NEED this medicine. But I do so there I sat as they explained all the allergic reactions I could have. It is truly terrifying knowing that you are willingly having something so toxic put into your body in the hopes of prolonging your life.

Thankfully I never had an allergic reaction. I was so tired it took everything in my power to stay awake in case I started to feel funny. By the time I was finished and Scott got me home all I wanted to do was shower off all the medical offices I had been in and go to bed. Which was exactly what I did and why I was alseep by 6 pm on Friday night. If you are wondering I didn’t wake up till 5 am the next morning.

So far in regards to side effects I am exhausted. It is more intense than when I had chemo a year ago. I feel broken-down. My stomach is unhappy so I am taking the anti-nausea medicines like candy. There is more muscle pain than I remember which makes me think the bone pain is going to show itself in the coming weeks. I have more headaches and I feel like it is from the chemo and radiation since they started shortly after I began rads.

It sucks but I am trying hard to be present especially for the kids. I made it to their swim meet yesterday and collapsed once we were finally home. Today I have hardly been able to get out of the chair my body is so weak. But I am glad I went yesterday. There is no guarantee that I will get to attend all their meets and I will not let Cancer steal another minute of my time with my children.

I have been dragging my feet on finding time to sit down and write over the last week because once I do things seem more real and there is still a very large piece of me that fiercely wants THIS to not be my life, or another chapter to my story. It is a hard acceptance.

Last week I had my orientation for radiation. It involved a bunch of CT images and was followed up by me receiving my first, and only ever, tattoos.

The small dot above is not a mole, that is the tattoo for radiation alignment. I have two additional “dots”, one between my breast and the other under my armpit on the opposite side. While laying down on the table a red grid is used to line up your body into the perfect spot ensuring the radiation hits the correct spot at each treatment.

I also have a this beautiful sharpie X above my left implant that is covered by waterproof tape. This has to remain on my body for the duration of the 25 rounds. The mark also helps the radiation techs find the right spot during each round of radiation. Can I just tell you I am glad that the X is not permanent?

Above is not the machine that gives the radiation treatment, it is a normal CT machine. A “map” of my breast had to be made for the doctor to graph where the radiation needs to be given. They use the CT imaging to create this map. The reason I have the picture is for the “pillow” on the table. That is my special pillow for each treatment. Once they have me in the exact location they want me in, that pillow is inflated with air and my name written on it. It might sound comfortable but it is not. After being inflated it is rock hard. I hate it.

I am not allowed to have my phone with me in the actual treatment room so I had Scott take this picture before he had to leave the room. The kids always want to know what is happening and what the machine looks like, so I used this image to show them and explain. The physical radiation machine is all open and moves around your body in a circular motion. Depending on where you are being treated the radiation can be administered on the top of your body or underneath you through your back. I am getting both and can feel a much warmer sensation when the radiation is given underneath me than on the top.

Monday I started this treatment. Today is Wednesday (3:13 right now). I am not a fan of radiation so far. It is just not comfortable. The actual treatment only takes about 15 minutes but the waiting and attempting (it is still hard for me to get my arms above my head fully) to keep my arms above my head without shaking is difficult. You are not suppose to feel anything but I can feel a warmth as the radiation is given. Afterwards I lather myself up like a Thanksgiving turkey in hopes of salvaging my skin and any burning or wounds that might come in the next few weeks.

Truthfully it is a super weird treatment. I think I am going to have to start researching how it was created, and by whom because as I lay there each day I am fascinated that someone was able to devise this insane procedure.

The side effects are suppose to be manageable and two days in I can say so far so good. I am more tired than usual and have upped my coffee intake to get through the day. Pretty sure no one wants to be reminded of my bowels, but the short reprieve from diarrhea is over…go figure that is the side effect I get again. One good thing is that the chemo I will be getting is known to cause constipation so perhaps they will counterbalance each other and I will be normal?! Probably not, but I am going to go with a glass half full approach and be hopeful. As for chemo my first treatment will be this Friday. Yippee, skippy.

Every one wants to know how I am, and the answer is fine. Really, I loathe that question. First I get asked it over and over. I hate it. I don’t want to talk about cancer. I don’t want to be reminded that I am fighting this stupid, horrible disease again. I don’t want cancer to be any part of my life. The last week I got to go back to being “normal” again. I got to be Brody, Reyna, and Emery’s mom. I got to be Scott’s wife. I had a normal amount of energy and even attempted a run. I felt like me, the old me, before cancer. There was no one asking how treatment was, how surgery went, how I was doing. It was one of the best weeks of my life….and now, it is over.

I believe that I am tough and that our mind has a huge impact on how we heal. I believe that God has a plan for each of us and that he still has a lot of work left he wants me to do. I believe in the power of prayer. I believe in being hopeful. I believe that love can heal all things. These are the reasons I am fine. No matter how hard things get I just remind myself of those five things and I am good.

Physically I am starting to breakdown a bit and I am prepared for it to get worse. Mentally I am still really sad. There are moments where I sit and sob in the shower, but that’s okay. I am also really happy. I am still here on this Earth with Scotty and my babies to wrap my arms around. I guess I am becoming bipolar. You would have to ask my mom, but I don’t think I have ever been one to complain, it doesn’t change the outcome. You live the life that you have been given and that is what I am going to continue to do, no matter how many times I have to restart this battle.

After four different visits with doctors all over Northern California, extensive reading of research articles in medical journals, and a whole heck of a lot of praying by me for guidance, we have decided on the best course of treatment: radiation and more chemotherapy.

Radiation last time was not offered because my lymph nodes appeared be “cancer free” and I had a bilateral mastectomy. This time every doctor we have seen feels it is the most important treatment to have. My radiation oncologist is LEGIT. His credentials are not often seen in the valley, in fact Scott and I both asked him what he was doing here with his resume and love of research? Come to find out his wife is also a RO and was hired at UCSF to do research which prompted them to moved across the country. They both thought his job in the valley would be one year, that was almost 15 years ago and he is still here.

A doctor’s resume might not seem to be of much importance, but in this case it is. The recommendation on the chemotherapy side is for me to mimic a study that was published in The New England Journal of Medicine in December of 2018. That study, often referred to as “The Katherine Trials”, was groundbreaking for HER2+ breast cancer patients that were metastatic stage 3 (you can read the trial or a synopsis under my treatment page here.under the name Kadcyla). It specifically focused on women that had HER2+ cancer that TCH or TCHP ( I received TCH) was not able to shrink the tumor or get a complete pathological response from treatment before they had surgery. Since I had surgery first, then treatment, it makes me a bit different than the study. One area is the same and that is the chemotherapy medicines did not stop the cancer for myself or the women in the study. So why is my radiation oncologist’s resume so important? It’s because this study had the patients do radiation and chemotherapy concurrent, or at the same time. After being in the room with me for two minutes my radiation oncologist brought up the Katherine Trial and how he wanted to follow the same treatment regimen.

With surgery only being about three weeks ago we need to let my left side heal a bit more before we start shooting laser beams at it. However, no one on my team wants to wait long to get treatment started again so I will have the simulator run through for radiation on the 8th. At that time they will get me on the table and using a CT machine map out where the radiation is going to focus. They will also tattoo markers onto my body to help ensure that they hit the correct spot at each treatment. My first physical radiation treatment will be on July 15th and I should be finished up around the middle of August. In total I will receive 25 treatments. They are given every day Monday through Friday allowing some recovery time on the weekend.

Right now I don’t have the specific day I will go in for my first infusion of the new chemotherapy treatment but it will be the week of the 15th. Again, the radiation and chemotherapy need to be given at the same time. Kadcyla, or T-DM1, is a pretty amazing medication. It is a targeted treatment but different from Herceptin (the medical name is actually trastuzumab and that is the T in T-DM1) because the chemotherapy medicine is actually in the drug itself. I pulled these images from the Kadcyla webpage to hopefully help explain how this treatment works.

It is a remarkable drug and I hope that it is strong enough to attack the cancer cells lingering in my body hiding out. You can see in the images that it is a targeted treatment and that means that it is not going to kill every rapidly developing cell in my body like traditional chemotherapy does. My hair should not fall out which is great for my kids. The healthier I look the less scary it is for them and that is one small thing to be grateful for. I will have a total of 14 treatments given every three weeks until complete putting me at being done around the beginning of summer next year.

I have tried hard to never sugar coat anything on this blog so here is the truth; this treatment is going to suck. It is strong, stronger than herceptin. Don’t be mislead that because it is targeted it is not chemo, this is chemo just administered more precisely. I will need to have blood work done every three weeks to monitor platelets plus red and white blood counts. I will need to have my liver checked every three weeks and eliminate any Tylenol and alcohol to protect it. The echocardiograms I have been doing will continue . every three months. With the radiation there is more concern with skin issues and I will have to have my lungs monitored for inflammation. My hand was shaking when I signed the release form accepting the fate on my body from the treatment.

It is scary….and I am scared. More than any other emotion I feel fear. Fear that it won’t be enough. Fear that I will go through this all again and the cancer inside me will find a way to grow again. Fear that the medicine will hurt something else inside me. Fear that I have almost no control of my life and my future. I am scared to start the treatment and also scared we are waiting to long to start it. I really wish I could go for a run or a swim and clear my head but neither are an option at this point which frustrates the hell out of me.

Scott had planned a big celebratory vacation for us after cancer. We were suppose to leave for Kauai today. But we had to cancel it, just like we canceled Disney World last year. I think that this is the hardest part for me, more than the surgeries, treatments, and side effects is the life my children and husband are having to live because of all this. They were so excited (just like Disney World) to go to Kauai. My kids have been doing extra chores and saving money for the trip. They bought new swimsuits and even did research on excursions they wanted to do (Scott booked them but thankfully we got our money back). There faces when we told them that another vacation was going to have to be put on hold, well it bruises my heart. We are going to try to do some fun things around here to make up for it, but it isn’t the same.

I know that what is coming is going to be challenging and I have always loved a good challenge. If I might ask, please be sensitive with my kids, especially Emery. She is the most scared out of my three and often asks me if I am going to die and if she will ever see me again. I beg you not to ask them questions but to come to Scott, myself, my parents or my siblings. If my kids wants to talk about this let them bring it up. They are exceptional children and have amazing friends, some that they want to talk to about this, but often they just want to be kids. I desperately need them to be kids, to be silly and sassy, to laugh and run and just live. It is the best medicine for me.