So far not so good

I started the new medication combination. When I got the prescription, Dr. McAndrew's nurse Claudia told me that I was starting with the 10mg Afinitor but that if the side effects weren't manageable then I could switch to a lower dose. Gosh, you'd think you'd start lower and then build it up in your system so that your body could tolerate it but I'm not an oncologist...

I was already weak, as you know, from the Xeloda. Plus as Dr. McAndrew told me, my blood is weak from ALL the cumulative rounds of chemotherapy - including those I did during and after pregnancy. My body is continually taking a beating and it's getting increasingly difficult to recover. It's like I can't catch up. Regardless, I started the treatment right away because - well duh, I want the tumors to shrink and go away. I want the cancer to fuck off and die. Dr. Moulder warned me about the mouth ulcers. Claudia told me that Philomena has many patients that didn't have bad side effects. I had hope to be one of them.

Well, well, well, over the weekend I started developing those nasty mouth ulcers. It started as one small one that I figured was a canker sore so I refilled my valtrex prescription (that is an Rx for herpes simplex - no, NOT the genital kind) which has helped in the past. No go. I got the MMX prescription mouth wash which is Maalox; liquid benadryl and lidocaine that you swish and swallow. I know, right? That is not a typo. I don't swish and spit, I swish and swallow. Gnarly. It worked great at first but the more I use it the less effective it seems to be working. Ugh.

Philomena told me to stop the Afinitor for 5-7 days to give my body a chance to heal. I told her how scared that made me and vowed to continue because "I'm a fighter". That and I'm incredibly scared; I am worried that this cancer is going to get the best of me so I want to be aggressive with treatment. File that under STUPID. I took it another night and woke up to about 6 mouth ulcers. My whole mouth is swollen and I have a rash on my eyelids, my chin and my upper lip (that always makes me laugh since it is a family favorite to say "what smells? Oh, that's probably your upper lip")... I went to acupuncture and Dr. Mao said that all my mucous membranes were terribly inflamed and that I absolutely should take a break from the medication. So I am. I'll take a five day break (maybe seven) of the Afinitor but I am still taking the Aromasin.

This photo shows two of the ugly sores inside, the raised bump rash on my upper lip and my eyelid rash. Ain't that a pretty picture?!?!?! Here she is...Miss America...

I posted a close up of the sores on facebook because while I appreciate when people are adamant that "I look so great and so healthy" or "you would never know you were in treatment" that I am not actually healthy and that I am, in fact, in treatment. I wanted to vent that I hate this cancer and the treatment. It's not just canker sores. Of course everyone had a response for some kind of topical ointment that worked for them. If only my immune system was healthy like everyone else...but these sores are chemotherapy related. The only thing that is going to stop them is to stop the treatment.  Hopefully they don't come back with the smaller dose. Nonetheless I am still trying any and everything. The MMX, benzocaine gel, dr. mao's special mouth rinse, valtrex, etc. etc. Note to those of you who recommended hydrogen peroxide rinses - it stings like a mother!! Don't do it. The tissue is too delicate with open sores. I was hopping up and down in pain. It felt like rinsing with acid...or fire...or acid lit on fire... My favorites are the MMX, Dr Mao's rinse and the benzocaine gel plus tylenol.

Here's another thing I posted on Facebook - a video of things said to cancer patients. I thought it was funny but not all of it was relevant...

Metastatic Breast Cancer Video

I know people mean well and it must be incredibly awkward to find the right thing to say to someone with a serious illness. I've been in the fight for years now and I struggle myself to find the right words. It's a challenge. Some of the better lines I've heard and make me feel supported are: "I'm so sorry you have to go through this" or "I'm sorry that this is happening to you" or "I'm sending love (or light or prayers or positive energy) your way"... I also like gifts of hugs, food, phone calls, texts, etc. Anything to make me feel thought of and relevant. Silence can be deafening.

I know I've written about this many times before. I don't know how to change this. It's too hard for me to reach out, I don't have the time or the energy most of the time. I have to rely on other people to reach out to me even though I don't have much going on except kids and treatment. WHICH IS A WHOLE HELL OF A LOT.  But I suppose that doesn't make for exciting conversation. What a downer it can be to talk to someone in treatment.  However, I do my best to stay upbeat and positive; I generally don't talk about cancer or treatment when I'm out. I love meeting new people so I can learn about them and shift the focus off me. I'm learning to be a good listener because I can't stand small talk. I'd rather hear about YOU!!

On another note, I went today for a breast ultrasound of my right breast, the normal breast because I was having some tingling. I figured it could be from nerve regeneration from the reduction surgery but I wanted to get it checked out. I went to Cedars and realized that none of this phases me anymore. It does at the very heart of it but the daily twist and turns seem manageable. After the ultrasound, where the technician took a very long time and asked a lot of questions I knew something was up. She showed the reports to the radiologist and I was then ordered to get a mammogram. After the mammogram I waited about an hour for the radiologist to review the results. Two lumps. He said they could be fibroadenomas but he's ordering a core needle biopsy to make sure. So I get to do that tomorrow! Yippee. I don't even want to go there. I have no idea what it would mean if it were cancer since I'm not sure my blood and my body is strong enough for another surgery. Hopefully I can find out the results sometime Friday otherwise I get to sweat it out all weekend for results on Monday. Yay me!!