At my last entry I was waiting to go in for a biopsy. The biopsy went very well. And, the results were conclusive. But, there is a story behind that fact too, so let's just pick up were we left off.
I met with Dr. J 10/9/14. We reviewed the results of the biopsy. The first test results to come back are the hormone test. I came back estrogen and progesterone positive, as I always have. Next, the perform a stain test to determine if the cancer is Her2 positive. (I have gone into detail on HER2 before. You can read up on my post about cancer growth) The stain came back in such a low range that they wouldn't normally perform a FISH, a florescence in situ hybridization, test. Dr J asked them to perform the test anyway, in spite of some teasing and questioning. The FISH test came back clearly showing that the cancer is HER2 positive. Good thing Dr J asked them to run the FISH, because if she hadn't I would have demanded it. I have always known that as soon as we could run another biopsy we should. I felt good about the treatment decisions we made, but never felt confident that the tumor wasn't HER2+.
For those versed in the difference in protocols, it seems moronic that I would be happy with a treatment plan when it wouldn't address the HER2 status. I can only say, I felt like both treatments were an option but I wanted to have a treatment that would allow me the most strength and fewest side effects at the time. That would not have been chemo with Herceptin.
So, with the new biopsy information the visit concluded with a dramatically new treatment protocol. (I really feel like I wrote about this before, but I can't find the post. If you are reading this again, welcome to my mind. Sometimes I don't know what has happened before and what is deja vu.)
I will be taking a 3 drug cocktail.
The first, Taxotere, a chemo that will kill off all the fast growing cells (cancer and hair a like) on a 3 week (or 21 day) chemo cycle. Day 1 is chemo day. Then on the 22 day we start at 1 again. I get chemo only on day 1, unlike the last treatment which had chemo on days 1 and 8. You can tell a lot about the chemo by the cycle. Giving me more days between doses means that this chemo is tougher- it takes more time to get over it before your body can handle any more.
Secondly, I will go back on Herceptin. I took this back in 2006 and responded very well. The side effects I had then were uncomfortable but manageable. In fact, I was driving myself to and from Utah from Idaho for this treatment.
Finally, since 3 is better than 2, I will take Prejeta which works along with Herceptin for a synergistic effect. These three drugs together have been tested in the Cleopatra Study, which you can read about here, here (very technical), or get the cliff notes here. The great news is this has been a successful protocol for many metastatic breast cancer patients. They are enjoying "unprecedented" 16 months without cancer advancement. It is being called phenomenal and unprecedented. Pretty fancy words when it comes to cancer. I guess they don't mean as much to me, because they aren't the words I am living for. I am living and fighting to hear the word - miracle, undetectable, we can't find any evidence of cancer. I don't mean to sound like this study and protocol aren't good news. It's great news. I should be over the moon, but I don't have it in me to hope this is THE ONE. Instead, I am going to follow the protocol and trust that one of these time God will grant me that miracle I am praying for because until that happens I am still going to die of cancer. My enthusiasm is tempered and realistic. I am not ever going to be satisfied with 16 months of hope at a time. I want to be like the rest of you. I don't want to know how I am going to die. I want to believe it is reasonable to think I will live to be 80.
So, I left Dr J's office with this new protocol outlined. I went to work getting myself psyched up and the children prepared. I even attempted to get the house prepared, but without friends who filled the freezer with meals and planned for meals in the coming week I would have been lost. Dr J and team went to work getting things authorized with insurance. We made the appointment to begin treatment one week later.
10/16/14 - This was my first long treatment without my mom. I haven't had a treatment that took so long to administer for about 8 years. I was grateful to be going into this alone. I am healthy enough this time that I would have to watch my mom suffer as she watched me there. I don't think I could stomach that again. A child should never watch their parent watch them go through cancer. It's hard to be the sick one.
I went in to this treatment prepared for the 5 hours on IV infusions (forget that - it was more like 8 hrs) I had my hotspot & laptop, it was almost like being at the office. I also had my hydration, hard candy and sunglasses for napping. And, it wasn't like I was there alone, Enrique was with me. He didn't leave my side once all day. Notice the black bag? Some chemo can't be exposed to light because… I don't know why… anything could happen I guess. And, that was just pouring into my veins.
Thursday went ok, Friday went ok, Saturday went ok, Sunday … no bueno. By Sunday night I was feeling awful. I asked some friends to give me a blessing (A blessing given by a Melchizedek Priesthood holder, by the laying on of hands and by inspiration, to one who is sick or otherwise in need of special counsel, comfort, or healing. If the blessing is for the sick, consecrated oil is used
(James 5:14-15) Learn more about my beliefs here. Within a few hours I was worse yet and called friends back again to stay with the children and take me to the hospital. I got loaded up on anti-nausea meds and they tried to help with the headaches I was having. By 1am I was home and in bed again. Monday mid morning I was still feeling pretty pinky. This would have been day 5 of my chemo cycle, and that falls right into the nadir point. The nadir, or low point is clarified here. Another friend took me into the Dr where they gave me fluids, to no avail. By the end of the day they wanted to close the office and I couldn't even walk out the door. They arrange a hospital bed for me and wheeled me over to the hospital. Remember a few weeks ago when I was down and just grateful I wasn't the person leaving on a stretcher? Well on 10/20 I was that person.
I spent Monday-Wednessday in the hospital as migraine headaches and nausea kept me from being able to rest and rehydrate. I had great nurses and doctors and I was so thankful to even more friends who visited, brought me soap and lotion so I could get rid of that hospital smell, and took care of my babies. I was definitely sad to be away from the kiddies - it breaks my heart to think of them home and worried, but they were well loved and cared for. But, what a happy day when they got home from school and I was there!
It took the rest of the week before I attempted working again.
Sorry, this isn't a very fun read, but it tells my story for sure. If you have had chemo or wondered what it is like, this is a true case. It is worst than most - usually a hospital stay isn't required. I know in my mind that when I go for my next treatment it won't be this bad because we know what to expect and I have new prescriptions to manage the side effects. But, my heart is scared.
I only know one way to handle this - just keep going. As soon as I regain strength I add in as many regular activities as I can. I don't look back, only ahead. And ahead are a few more treatments (3 if things go great, 5 if needed) and an end to this chemo. I have also learned it is a waist to wish this challenge away. I don't know if the next challenge (or chemo) will be easier or harder, so I am happy for what is good with this chemo.
What is good about this chemo? I am glad you asked, because this is a great way to sign off…
1. I have one down and know how my body will respond. Now I know how to fight back
2. I have good friends around, and I need them! I will be asking for their help.
3. They are awesome at work.
4. I have the best kiddies ever! And, we are all under the same roof.