This is the hardest blog post that I have had to write to date. Danny and I saw my oncologist on Tuesday (8/30) for a scheduled appointment. We needed to run some labs since my platelets had been running low last week and I was having an abdominal CT to see if we could figure out why I had had abdominal pain after the last two treatments. Going into the appointment we didn’t know if I would receive treatment because of the low platelets or if the CT was going to show that there was a complication with my ileostomy.  We also knew that if my platelets were still too low there was a possibility that I would end up over at the hospital for a blood transfusion.

The labs showed that my platelet count had improved since being drawn the week before. My hemoglobin had also improved along with my white and red blood cell count. The CT didn’t show any problems with my ileostomy or lungs. However, it showed that my liver was worse than in May and my spleen is very enlarged as a result of my liver losing some of its ability to do its job. The enlarged spleen and liver are most likely the cause of the fatigue that I have been experiencing for the past week and a half. My liver enzymes have been climbing for a while and I’ve been having trouble getting enough to eat as well because my stomach doesn’t have much room between them.

We had a very good conversation with my doctor about what is next. We realized that the chemo was hitting my body harder each time, and I was struggling to recover from each round. We expressed these concerns to my doctor and asked if there was a gentler treatment that would buy us more time. He said that the rest of the options were not a guarantee and results could be mixed. We then brought up stopping treatment altogether and after much discussion with him we decided that was the best route for us. He agreed and said that if he were in our shoes, he would have done the same. The doctor has said I likely have no more than 6 months to live now that I have stopped treatment. The cancer that has spread to my liver will cause it to shut down eventually. With that news we have decided to call hospice. This may seem a little earlier than most people would call, but when I am on hospice I will no longer have to travel to Columbia for routine appointments and can avoid the ER for pain management. We are going to take each day as it comes and try to squeeze in every opportunity to make more memories.

Danny and I have spent a lot of time in the last few months talking, reflecting, and praying about this moment in time. So, while we weren’t necessarily ready to have this conversation today, it is something we had come to a decision on together in the past. We agreed with my doctor that it was time to stop treatment as it was no longer providing me with a good quality of life. This has always been my line in the sand that when quality of life slipped; I would choose quality over quantity.  Our family has fought for 6 ½ years to just have a little bit more time and truthfully, I’ve gotten more time than I thought I would. While I would have loved even more quality time, I’m thankful for the time I’ve gotten.

Please know that this was not an easy decision to make, but it is what is in the best interest for myself, Danny, and the boys. We are all still trying to process our emotions, and this will take some time. I’m not giving up; I’m just facing the reality that to continue treatment means that I will not feel well. My body has already told me that it is struggling to keep up and I’m tired of missing out on things because I don’t feel well from the treatment. I ask that you continue to pray for us as we enter this new phase in our journey. I also ask that you not judge us and please be supportive of the decisions that we have made.

Between Danny and I as well as both of our families we all get asked a lot of questions which we are happy to answer. But to keep things easy, or if maybe you were too afraid to ask, we made this FAQ sheet for you!

Is your cancer going away? When does your treatment end?

It’s not going away, and I won’t be cured. My treatment has officially end because I can’t physically do it anymore and it’s not worth the toll it takes on my body and family. This treatment plan has always been intended to buy me more time with my family.

Have you considered entering drug trials?

Yes, but I have decided not to. There is a lot of risk involved and I just don’t want to do it. I am choosing treatment plans that have been tested and have the best chance of working to lengthen the time with my family.

Where is your cancer located?

It has spread (metastasized) to my bones including my spine, ribs, knees, shoulders, and hips. It has also spread to my liver.

How long do you have left?

My oncologist has stated that he doesn’t know. But he would guess anywhere from 1-4 months but not more than 6.

What is a PET scan?

Basically, it’s a special scan that looks for cancer in my body.

How old are you and your family?

Danny and I are both 39 years old, David and Luke are 11 and 9 respectively.

Have you gotten a second opinion?

My oncologist (cancer doctor) consults with several other doctors in his practice. I am comfortable with him, and I trust him. I am not interested in consulting with other doctors at this point.

How long have you had cancer? What has the journey been?

I was diagnosed with breast cancer in the spring of 2016 when I found a small lump in my breast. Since then, I have had both breasts removed, reconstructive surgery, and, because my cancer is hormone receptor positive, a full hysterectomy with removal of my ovaries.

At the time we had genetic testing done and the results were that my cancer was not hereditary. There was also no cancer in my lymph nodes so no reason to believe that it had spread.

In 2019 I had a pain in my back which I attributed to working with preschoolers and sitting in tiny chairs. We later found out the cancer had returned in the form of a large tumor in my spine. At this point I was diagnosed as stage 4 metastatic breast cancer and was told that it was not curable, but it was treatable, and I would likely be getting treatment for the rest of my life. I had emergency reconstructive surgery on my spine and chemotherapy. We also found that the cancer DID test positive for a gene mutation that was previously unknown to be associated with cancer. So, my cancer is hereditary after all.

In the Fall of 2020, I was on a medication called Verzenio for cancer treatment and I was having major abdominal pains and issues. I was diagnosed with ulcerative colitis which my colorectal surgeon believes was exacerbated by the medication. I had to have my colon removed and I was given an ostomy bag. I was scheduled to get another surgery to remove the ostomy, but I haven’t been able to stop treatment long enough to have the surgery so it’s staying. After the news today that’s pretty much where I am now.

Do you have the BRCA gene mutation/deletion?

I do not have that particular gene mutation. I would have to look up the one I do have, but it’s a bunch of letters and numbers.

How are you doing?

I have good days and bad days. I’m hanging in there as best I can.

I have seen you out in a wheelchair do you need that to get around?

I have been using a wheelchair to get around on occasion so I can save my energy. Sometimes if there’s a long event I want to attend, I’ll have someone push me around in the chair, so I don’t spend what little energy I have walking long distances.

What do I say? I want to say something, but I just don’t know what to say.

You can just say I’m sorry, or this sucks, or I’m thinking about you. Or you can just talk about the kids, or the weather, or anything else you want. I still enjoy discussing the same things other people do.

What treatments have you done?

Tamoxifen, Verzenio, Faslodex, Taxol, AC (the red devil), capecitabine, probably 3 or 4 Herceptin based therapies, Tukysa, and Abraxane. That’s all I can remember!

Have you tried this diet/drug/therapy/food?

Danny and I get asked this a lot. He looks into it, but if we can’t find any decent research supporting its use then we don’t bother. A lot of suggestions come with the statement that “it’s worth a shot” or “it couldn’t hurt”, but if we tried that with every suggestion we got, then we wouldn’t be left with much free time. Again, I trust my doctor and his medical team first.

Are you up for a visitor? I keep meaning to call/message you.

YES! I try every day to get out of the house a little, but if I can’t make it out then having someone over helps me keep my sanity. Just text Danny and he can set up a time. 573-826-0949