Last Friday I had my second dose of TDM1. It was another day of doubling up on treatments with radiation in the morning and chemo in the afternoon, I was tapped out by dinner time. Scotty had a meeting so my mom tagged along for this one.

The medicine did not bring out any adverse reactions during my last infusion so I was able to have the medicine given over 30 minutes instead of 3 hours. I can’t decide which is better. When the medicine is slower I feel like I have less reactions to it. This could be in my head but I feel more sick after receiving the medicine quicker.

Overall the side effects have been the same; nausea, constipation, exhaustion, lack of energy, severe headaches, and no appetite.I guess I am starting to accept feeling like this as my new normal.

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.

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.

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.