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.

Today is officially my last targeted chemotherapy treatment. I should be overjoyed. I should be relieved. I should be asleep. Yet, I am none of those things…if only our minds had a shutoff switch.

Everyone is beyond excited for me to be at this point. They want to throw a party and I just want to throw up. To them it is exciting, I’m done, Yippee!!! To me it is the realization that I am back to being on my own. I was on my own before and I couldn’t fight this thing once it woke up, so how in the hell am I suppose to attack it if it comes back again?

The emotions and anxiety that are inside me are making me sick to my stomach. Rationally I know that my chances are good, that I will only fight this disease once based on research studies. However, based on research studies I was never a candidate to get cancer, so there is that. I think once you get cancer you are allowed to have a few irrational thoughts, and today, I am having some.

I can admit that I am scared. I am afraid this might not be the end but a brief intermission. At the beginning of this I referred to breast cancer as a journey, and it has been one. Back then I think I thought it would have a very clear beginning, middle, and end. What I now know is that the only thing obvious with cancer is the beginning and after that nothing is obvious. A year ago I thought this day would never come, now that it is, I wish it was still further in the future.

I'm late actually getting to this post since my infusion was over a week ago. No excuses, I didn’t have the mental energy to sit down and do it. My youngest is sick with some nasty sinus infection that has spread to her throat. So instead of resting and posting the blog I sat in the doctor office and pharmacy, made her favorite vegetable soup from scratch, and spent a bunch of time with her laying on top of me on the couch. That is not a complaint, I embrace the chaos of every day life, in fact I cherish it. Nothing like cancer to make you long for more days hearing your kids whine!

Round 17 was pretty routine. Scotty has decided to make it to the last few rounds of treatment. As he told me he has started this thing with me and he will end it with me. God found me the most perfect man for me and I am grateful.

I think he wears the same shirt every time….

You can’t see in the picture that well but I am finally beginning to have eyelashes begin to grow back and stay. I have missed them so very much! Each morning I spend a solid minute just starring at my eyes and thinking how lovely they look with eyelashes. Eyelashes make a person look less sick, who knew?! The odd red ring around my eyes and pallor of my skin seem nonexistent all because of a sprouting of eyelashes!

My hair has lost its mind. Nothing is keeping it down any longer, not even my son’s gorilla snot that had been working. I actually might have to buy the type of gel that people use to keep their mohawks up.

So the fun stuff. My nose is still dripping, my feet hurt about 300 times worse than when I started just the targeted chemo in November, there is no change in the amount of diarrhea and stomach aches, and my nails are so painful from cracking that they bring tears to my eyes some days. All in all not bad for only needing one more infusion!