It all started out great. First with only one medicine being infused I should have been there about an hour and opted to go alone from here on out. As I informed Scott, I am a big girl, a bad ass that is killing cancer, I don't need a man (I am full of shit, I need him something fierce). However do to a shortage of nurses, and the pharmacy being backed up, I was there closer to two and a half hours. Totally fine. Let's be clear I would wait double that to get my medicine.
From here on out I am getting Herceptin infusions. This is a target therapy specific to HER2+ breast cancer. As I have said on here numerous times without this drug being created women with HER2+ cancers were dying from it at every stage. I want this medicine like a fat kid wants cake. I also want cake, chocolate cake. But seriously this medicine is amazing. There is a good movie called "Living Proof" staring Harry Connick Jr in it as the doctor that created it and the struggles he had to get it developed it. You can also read a little more about it at this link here for herceptin.
I decided to put both because if you look REAL close you can see a small amount of peach fuzz on my scalp. Herceptin does not make you lose your hair because it specifically goes in and searches for HER2+ cells versus the other two drugs I was on that just kill everything. As upsetting as losing my hair was in the beginning I am pretty much fine with it now. Most days I just rock the bald head. My kids however are anxiously awaiting the day I have hair again. I believe in their young minds it will mean I am healed and healthy.
We have been very open and honest about my cancer and treatments with the kids. I would like to think that this has helped them deal with it as well as they have because they are amazing. When we talked to them about this next phase of infusions the hair coming back was what got them most excited but all three asked if I was still not going to be able to eat and have to go the bathroom all the time. I try very hard to be honest with them so I told them that for now we didn't know. That most likely I would be in the bathroom but hopefully no more mouth sores or weird issues with taste. When I dropped the kids off at school before my infusion Brody grabbed this StarWars sticker out of his backpack and stuck it on my leg. He said it was for good luck and that I would have the "force" to not get sick. I know it is completely silly but I started at that sticker for almost the entire two and a half hours.
So here is the update on how I have been feeling since the infusion! Honestly it is a bit unsettling to still feel icky after this infusion when nurses, my oncologist and all the reading I have done suggests Herceptin alone is pretty "easy" in comparison to the treatments that just kill everything. Not that you care to know this but I still have diarrhea. Actually it comes and goes. When it goes it is replaced by gut wrenching constipation that makes you long for the diarrhea to come back. After the diarrhea comes back you wish it hadn't and pray for the constipation. It is a vicious cycle that I hope comes to an end soon.
Another area I thought might ease up is how lethargic I have been. So far this is the same. It is hard to tell if it is from the actual medicine or just my body trying to heal itself. I really have no idea at this point.
A new side effect (like my rash that was some what mysterious and less common) is red, swollen , burning, painful toes.
This is not the best picture and you might have to zoom in, sorry! A few days ago my big toe started to hurt. I assumed I was getting a toe infection and contacted my primary care physician. He prescribed an antibiotic and off I went thinking all would be fine in a day or two. Fast forward a few days and now all the toes on the left foot look like the big toe and as of today half of the toes on the right foot too. Obviously this is not an infection so I contacted my oncologist. She said she needed to see my actual nail so I took off all the polish yesterday and sent her a picture. Her response was she doesn't know. There is hand and foot syndrome that is common for cancer patients but typically not when on targeted medicines alone..I feel like any weird side effect that is possible I get. At this point the antibiotics have done nothing. I can't put on anything but a flip flop and if even the sheet rubs on my feet I whimper. Cookie, my 5 pound dog, stepped on them today and I broke down crying. It is so stupid that this is a side effect I have! Now I am bald, with rock hard expander fake boobs, limit eyebrows and eyelashes, a bloated stomach thanks to chemopause, 15 extra pounds (we are not even getting into that at this point), severe issues in the bathroom, AND I walk funny on toes that are blood red...I GIVE UP! Seriously if the Lord wanted to make sure that cancer treatment effected every part of this Earthly body: from my head (bald now) to my toes (burning and in excruciating pain) I can say with 100% certainty that we are there. Nothing has been missed. Perhaps from this moment on things will be less miserable????
Girl...friend. This is usually the part where everyone tells you it's going to be fine. I believe in my heart of hearts that's true. But sometimes it is also important for people to just recognize that everything about this whole journey sucks. Of course it is a "God" thing and prayers are always needed in full form. Everyone reading this--if you would pray every day for our Alicia and for Scott and the kids--it will go a long way. But also girl, it's okay that it sucks. You have been amazing in telling your story, in staying positive and in fighting strong on the daily. I can't even imagine what those thoughts are behind those bathroom doors and the ache behind the pain and the frustration that comes after the fascination of whatever new strange thing is happening to the body. I want you to know that I love you. And that nothing about this is supposed to be fun or glittery or celebratory. But because you are who you are---a shining light that loves her family more than anyone I have ever met. A woman who has looked at feminine strength from all angles. A mother who literally lives every moment to acknowledge God in the face of her children and a wife who would do anything under the sun for her husband. I know, that those damn toes and the bald head are really just another form of beauty. I'm sorry you are so tired. I'm sorry you are worn from holding on so tight. I'm sorry that peace is short and fleeting. But stay with it girl. Find that light inside you that says yes....that has has never taken life laying down...that has been a beacon of strength and fortitude and the place that her family call a home. You are allowed to feel every feeling you need to feel. You are allowed to take the pain to the limits and curse God and ask why...you are allowed to turn life on it's head and say "Enough." But please, with whatever strength you can muster and whatever joy you can feel remember that healing requires love and laughter and honesty. Healing is imperfect and it takes time. It will take a lot of time. Be gentle with yourself. Allow the imperfections. Allow the falling apart....so that someday in the near future, as your hair comes in strong and beautiful, so will your smile and your soul and you will look backwards and know that your cells have been reborn into something you never expected. And you will start to fall together...Miracles come in all forms gorgeous, even ugly painful toes and heartbreak and a beautiful round head. You are incredibly loved....breathe and keep believing. (And scream and cry when necessary. There is strength there too!) Keeping every part of you close on this homestretch. Love you lady!!
ReplyDeleteYou know you just made me cry like a baby when I read this right? I love you sister. Please take care of yourself and read the advice you gave to me and take it. Slow down and listen to your body. Hugs
DeleteI hate all of this for you. I am clinging to the fact that all of this stuff in your body is a sign that the chemo is plowing over and irradiating every single hint of cancer. The fatigue is so understandable with all of this and all that you are doing and trying to do. Know that Steve and I send our love and pray daily for you and your wonderful, precious family!
ReplyDeleteI am hopeful too...
Delete