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.

I don’t know how to do this so I am going to go with the approach I used last time, ripping off the band-aid.

I have cancer…..again.

If you are a little shocked reading that, good, so am I. In fact, I think I had my first ever panic attack the night I was told.

The last blog post was right before what I thought was my last targeted chemo infusion. If you read it then you know that I had a lot of apprehension about not receiving anymore treatment and also the lack of scanning in the breast cancer community. When Scotty and I arrived for the infusion they checked us in like normal but as the nurse took us back she informed us that we were actually already done with treatment and they didn’t know why the appointment had ever been made.

It was confusing to be told that we would be done on a specific day for months and then told there was a miscalculation. We thought it was best to speak to our oncologist to confirm everything with her and to find out what happened. At no point were we upset or demanding but our oncologist was not happy about being asked to speak with us. There was a big scene with her when we were finally able to get her to come out after being told she was much too busy to take a few minutes to speak with us. Scott and I were both calm but the doctor was not. This was unfortunate and continued as we tried to leave as she came out into the hallway where she continued to speak boisterously at us for interrupting her day.

The scene was inappropriate and numerous bystanders witnessed it. One of the people that was watching came up to us after the doctor had left and introduced herself as a manager within the hospital’s quality of care department. She begged us to come file a grievance because although she didn’t know any specifics, what she had witnessed needed to be documented as it was not acceptable. This lead to multiple interviews and then a phone call the following week from the manager of the Oncology Department. During that interview my husband said we were questioning the treatment plan that I had been given and had lost trust in their care. The manager asked him how they could repair the relationship because we have 10 years of monitoring and want to have a good relationship. Scott responded that we should give me a scan to confirm that what they had done had actually worked and there was no cancer present in my body. So, a scan was ordered.

The incident that took place was terrible but without it I would not have been able to have a scan unless I became symptomatic. The truth is if I had to wait till that I would have probably died before getting it, especially with how aggressive my own cancer is. Sometimes the things we think are not blessings actually are. I think this is one of them.

On May 31st I went in and had a CT scan from my neck to my pelvis. That afternoon I got a call explaining that it showed an enlarged lymph node on my cancer side and standard protocol was to have it biopsied. They were able to get me in for the ultrasound and biopsy on Tuesday, June 4th. The following day I got a call confirming that it was breast cancer that had metastasized to the node. Yesterday Scott and I went to see the surgeon, a new one because my last surgeon is out having a surgery of her own. This is what we know so far:

1. The doctor’s aren’t sure if cancer returned or resisted the chemo and targeted treatments, either way it is not good news.

2. The cancer is still HER2+ also not good news because the wonder drug herceptin my cancer is immune to.

3. It is considered metastatic because it grew and spread outside of original cancer site.

4. The tumor or size of the lymph node is twice the size of the biggest tumor I had with initial diagnosis.

5. Saturday I will have a PET scan of my entire body to confirm if there is any distance metastatic disease, hopefully results are in by Monday.

6. Monday I will have an MRI of my brain. PET scans are not good indicators of disease in the brain which is why this is also needed.

7. Surgery will be scheduled for some time this week and will remove 35-40 lymph nodes from the left side armpit. There’s a pretty good chance I can lose more mobility in that arm and have lymphdema (swelling of the arm).

8. All treatment moving forward will be more aggressive with both radiation and chemo, both will be needed, for another year or longer.

9. We will be meeting with the Head Breast Cancer Oncologist for Northern California in the coming weeks to make sure that we are doing the right treatment to try to stop the cancer from spreading further.

Hopefully in the coming days we will get a few more answers and I will do my best to get on here to update it. I’ve had to curl inside myself the last few weeks to wrap my head and my heart around this.

I am unbearably sad. I don’t know if I have ever experienced a pain this deep. It literally takes my breath away. There is an undeniable longing in me to live on this Earth and see my children grow, to hold Scott tight to me. and grow old together. I am very frightened that I may not get to do that.

I am not giving up, I will fight this again, and every day that the Lord allows me to have, but I also know that I must be realistic. Every thing about cancer I have defied. I’m not the right age, I don’t eat an unhealthy diet, I exercise, I am not overly stressed ( well now I am). But I got cancer. Then I got one of the less common types, only 20% of all diagnosis are HER2+ only. I do treatment for a year with a drug that all the statistics shows is effective at attacking the HER2+ cells only to find out my cancer is more aggressive than most. Now with the recurrence so soon and outside of the original location each doctor is baffled by it and explains it is not common to see and there is a lack of research on what to do in this situation. One research study I found in a journal of medicine from Canada suggested it only happens in about 1% of recurrence cases. What that all means is I am beating the odds in the worst way.

Right now I have no idea how I am going to do this. I’ve switched my fruits, veggies, and meats to organic. I drink that ridiculous PH balanced water. I try to limit any unnecessary sugars. In the last year I have only skipped a workout a handful of times and only because I was medically unable to exercise. I don’t know what else I can change to make this cancer want to get the hell out of me. But, I will keep trying.

This is also not just about me but my family. The first time was rough, this is going to be even worse. Scott and I are trying very hard to be as open and honest with the kids as we can. That alone is a gut wrenching experience. We have told them that it is okay to be sad and cry, to talk to our family or friends if it helps them, and to ask us any questions that they want. The past few days have been really hard. If you are near us please be gentle with Scott and my kids. It feels as if I had to rip the scab off a healing wound.

If there is anything that I could ask it would be to give comfort to those around me. When someone gets cancer the entire family gets cancer. I know that they feel helpless and are going to need more comfort and love than me because they are constantly lifting me up. Please don’t contact them to get information, come to the blog, I will keep it up to date as soon as I know new information.

I might be sad when you see me and a little more quiet than usual. There may be moments that I cry for no reason. I may have to hug your children when they are around me because they bring me such incredible joy. I want to be surrounded by life and happiness. So many of you that will be reading this provide me and my family with that. I know I didn’t do this but I am sorry that so many people around me are going to feel discomfort, and so many children will have to know about this disease and the immense pain that it can bring. I wish it was different, but wishes don’t all come true.

As I pray for the ability to understand the path that is in front of me and the strength to overcome, I also ask for those around me to be comforted. It takes a village and mine is filled with exceptional men, women, and children. I am grateful to have each of you in my life. I know that what awaits me in the coming days, weeks, and months will be harder than what lays behind me. I will say that I am ready, scared beyond belief, but ready.

So, here we go again.