The total keeps increasing with each round of treatment, 21 rounds complete, 4 of the newest targeted medicine. Do I feel confident that the medicine is doing its job and actually killing any cancer cells that could be hiding? Truthfully, no. Do I have HOPE that is? Yes. It is hard to be overly confident when the last time I was told all the cancer was gone while receiving both standard chemotherapy and targeted treatments. Being realistic is a place that I am happy to chill in this time.

My mom came with me again for this round.

I think she has a little bit too much fun while she is there. First she roamed the entire infusion center looking at all the quilts that have been donated. Then she decided we both needed flu shots and since they had lots of needles here, it was the perfect place to receive them. Last she asked every nurse and patient about the port pillows that she makes and we donate. My mom is pretty laid back, dare I say quiet when compared to my father, but not today! She was walking into nurse’s stations and grabbing port pillows asking patients if they needed them. Then she lectured the nurses on needing to offer more than one so they had enough for all their vehicles. I mean, it’s true, you need one for every vehicle because with chemo brain you forget to grab that thing 90% of the time. She had me grinning the whole time.

The port pillows is something that has been near and dear to our hearts since I got my first one a few years ago. My mom and I have even discussed the possibility of creating a page on the website to offer to mail port pillows to cancer patients. As much as I think we should I am hesitant to do it and then have a supply and demand issue. If you are reading this I would love input on it.

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.

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.

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!