Perspective

I have so many things I want to tell you. I would even be willing to post pictures just to give you a bit of perspective, but that might be taking things a bit too far.

So, I will tell you this:

If you are having a really bad day, and you feel like the world is ganging up on you, I want you to look down and take a peek inside your shirt. See down there? See your breasts? (and this includes men!) Do you see your nipples? Are they still attached? If you nipples are still firmly attached, and they are not threatening to FALL OFF, then tell yourself, "Things could always be worse. I still have nipples."

And "worse" is a relative term. I am still walking, talking and breathing. Breasts are not what keep me alive, but they are part of my fight at the moment so that's where I am. I'm about ready to stop fighting for my nipples in my quest for pain free days.

And that, my friends, is your bit of breast cancer awareness for today. 

The Next Phase

The last few months have been so crazy. I went from being a "new" parent to a cancer patient in just the blink of an eye. I learned about breasts and breast cancer. I learned about vulnerability.

I walked past store windows and was startled by my reflection. One day I was in the bathroom with one of the kids when I turned and jumped when I saw a man standing behind me…only it was my own reflection in the mirror. I learned to recognized this new image. I learned to be comfortable without hair. I gained a tiny bit more confidence and could empathize more with my kids who get stared at often.

I learned to make decisions based on what I know today, but that the information I have tomorrow may change the decision. I learned to stop second guessing myself. I learned to trust my decisions no matter how difficult they may be.

I've learned to accept help, which was possibly the most difficult lesson in this whole journey. I've learned I have TRUE friends all over the country... all over the world, and that I needn't have met them for them to make it into that category.

I have NOT learned to be comfortable with the word "cancer". I still have trouble saying, "I have/had breast cancer." Those words aren't for me. When a situation arises that I must utter the phrase my knees become weak and my stomach lurches. It doesn't matter who I'm talking to, how well I know them, or if they are a complete stranger,  I will almost always find a tear running down my cheek. I'm not usually a crier, but now I cry every day. Every.single.day.

I have survived diagnosis.
I have survived humiliating examinations.
I have survived treatment.
I have survived discussing my breasts and nipples as if they were my big toe.

My spiritual self is intact. Perhaps its a bit stronger in some areas and weaker in others, but my physical self? It needs some work. Not just my breasts, but my entire body. Right now it is time to work on the breasts. I am stunned…I feel as if I'm walking in a dream…I can't believe this is what is ahead of me. I try to remind myself that, like childbirth, thousands of women go through this every day. I can do it. I will be fine. Still I must go through the motions of making sure Dean has all the information and documents he needs "just in case".

There is a lot of work ahead of me. Ahead of us. This is a four month process and then I must work on the other parts of my physical self. The overweight parts. The "not working as well as they should" parts. The parts that need to carry me another 40 years.

Tomorrow is the day I start.

I am ready. 

Scars

I've been quiet lately. I have all kinds of things to say, I just don't know how to say them or where to start. I'm at a loss for words.

On September 12th I'll be having a bilateral mastectomy with immediate reconstruction. I wish there were a way to know what the end result will be. There is no way to predict how I will heal. Breast cancer stays with you. Forever.

Please watch this video. Breast cancer is not a pink ribbon. Breast cancer is about survival. It is also about the 39,620 men and women per year in the US who don't survive. ( http://www.breastcancer.org/symptoms/understand_bc/statistics ) If breast cancer stayed in the breast people wouldn't be dying from it.

For this I am thankful

This is is not just a boring cancer post. I promise.

Things can go downhill so fast. Today was a good day! Pain level was very tolerable, I was awake all day. Audrey and I made a short trip to the grocery store, had lunch, then picked up the boys for therapy. I was fine, though starting to feel a bit tired by the time we headed home.

Sat in the sunshine to watch the kids play outside (you all know how I've been needing the sunshine this spring! Don't worry, I'm being careful with my sensitive skin in the sun right now.) and thought to my self, "Self…I think you have the chills." Took my temp and yes I am running another fever, 100.8 so I called my clinic.

As it turns out there was one blood test that was not back until today. Liver levels are elevated. Plus Dean says my port site looks worse tonight than it did this morning. The rest of my counts were right at normal yesterday, so my doctor said I could wait until morning to come in. Then I need some fluids for the weekend and IV antibiotics, plus re-check my counts, particularly my liver.

I felt pretty ok all day, and  yet there was something brewing. I ended up in the Emergency room at 1:00 a.m.

Still, God very clearly showed me something today.

I am thankful for Cancer.

Cancer is part of my life story. By walking through this journey I am living out the plan that was pre-ordained for me so that I might become the person God intended me to be. I need cancer for me to grow. Personally I would have chosen something different, like winning the lottery or something, but I know God's plan is way better than anything I could ever think up on my own.

I am thankful for chemotherapy.

Yesterday, as I sat in the chemo chair getting rehydrated, I looked around the room at all the other people. Those who have been doing some version of chemo for months, others who were arriving for their very first time. I visited with the man next to me. I tried to hold myself together as he humbly told me bits and pieces about himself, about how he never thought he would have kids, but his only son is now 6 years old. My new friend will not be here to see his son's 7th birthday.  All these people have a story. Some will not be here next year, or next month. Some will still be celebrating years from now. God wants me to meet them. He PUT me there to meet these people. Yes, I would rather meet them on a cruise or while sitting on the beach of some tropical island, but God's plan is way better than anything I could ever think up on my own.

I am thankful for bone pain.

I know, right?

It is about compassion.

I know I have not always been the most compassionate person in the world. Yes, I can do a lot of things, but compassion is an area where I struggle. "Deal with it". Know what I mean? But in the past week there has been more compassion poured upon our family, with every day something happening that astounds me. Still I have had conversations with people who say the compassionate words but their voice says differently. It is what I have always done. I have said the words without always feeling them. The bone pain I have had the last week has shown me what true pain and misery is. Never in my life have I felt such pain, even after major surgeries. And still, I know there is pain worse than what I have felt this week. At some time I am going to need to care for someone who is in a lot of pain, and I am going to need TRUE COMPASSION to understand that pain and care for them the way God says I should. When you are lacking in compassion, God will find a way to develop that in you. So thank you, God, for bone pain.  God's plan is way better than anything I could ever think up on my own.

Round1 Day7: Notes to self

These notes have taken me days to write. They're mostly for me to remember back, but for others too who will be behind me. If you're new here, I'm honest. I don't hide behind the positive because it isn't helpful to anyone. I can have a positive outlook while swimming through hell, I've discovered.

Day 1: Thursday, Chemo infusion.
Note to self: Taxotere goes straight to my GI system and I will not be able to drive myself home. IV steroids keep me "up". I get home, life is normal other than frequent trips to the bathroom. S. S. made dinner and watched Audrey. Thank you!

Day 2: Friday, Neulasta injection. This keeps my white counts up so I don't get sick. So far so good. Running to the bathroom within 10 - 15 minutes of eating or drinking anything. Doesn't matter what it is, but so far am staying hydrated. Taking all my anti nausea drugs plus decadron. L.G. made dinner. Thank you!

Day 3: Saturday. Taking my oral  anti nausea drugs faithfully, in addition to decadron. Drove Angela to a class and realized I probably should not be driving because I was way too sleepy. Got home and took a short nap while Dean and Tyler hooked up my sidecar. Will give the kids short rides after I run Tyler home. So I thought. Haven't eaten all day to stay out of the bathroom. Got home at 7:00 and went to bed. Slept until Sunday. Bone pain from Neulasta has started. Its tolerable. I can do this.

Day 4: Sunday. So *this* is "bone pain". I can do this. Slept 17 hours. When I was awake it was to make toilet runs.

Day 5: Monday. Ok, I get it  now. Bone pain. It comes in waves. When it is "low", I'm about a 4 on a pain scale. It is like having influenza, that same kind of ache, only you can't get rid of it. When a wave hits…I have nothing to compare it to. No frame of reference. It keeps me in tears. There is way to find a comfortable place to lay. Hot baths do help some. Texted Dean and asked him to please bring home destin diaper rash cream. I'm desperate. Pooping pure bile tears your skin apart. My friend Ann spent the entire day here, keeping Audrey occupied while I stayed on the couch. Praying today is the worst day. K.F. from the DSAM brought dinner, and her husband's amazing cookies! I was able to eat a couple, (out of desperation, I was forced to eat them. Really.) I wish they had stayed with me. We will need that recipe. Slept 10 hours during the day.

Day 6: Tuesday, There is a God! Today the bone pain is mostly gone. I can move around. Still no energy but I didn't sleep all day. Ann came again to hang out with Audrey. It's been 245 days since we hit 80* here. We sat outside in the fresh air while I took so pictures of Audrey and Alice. Thankfully pushing the shutter button doesn't take much energy. We need to teach Audrey to smile on command.
Got a little over heated in a few minutes. Plus the constant toilet trips. The boys' therapists made dinner. Thank you!

Day 7: Wednesday. What the hell????? Why is the bone pain back today? Why am I miserable? I'm back to Monday's level of pain. Scrounged up clothes for the boys, shorts and tshirts. Was surprised later to discover it was only 58* because I was sweating and hot. Hmm Must be hot flashes. Have a check up at the Onco clinic. Pretty sure I'm dehydrated. And there is a new rash covering my forehead.

Notes to self: When you are dressing the children in shorts when the rest of the world is wearing sweatshirts, it might be a good idea to take your temperature. Got to onco clinic to discover I'm running a fever. Nurse took my bloodwork and asked, "How are things going." which is when I started bawling. I hurt so bad. And was weak. And I don't even know why I was crying, but she put my head on her shoulder and patted my back, then pulled back to look at me and said, "Yep, no tears. IV fluids for you." Then she said, "I have something for you. We only have a few of them. Be right back." She came back with a 31 bag full of goodies for sitting in the chemo chair! How sweet she was. And I love the bag.

First I had to meet with the doctor. My counts are good. The neulasta is doing its job keeping my white counts up. Without it I'd be in the hospital at this point. Thanks to the Taxotere causing severe diarrhea I've lost seven pounds this week. Usually the Neulasta pain only lasts the first week then goes away, "however there are the few people who it hangs around the duration of therapy". Oh good Lord, I have drawn the lucky straw AGAIN! She asked me about the pain scale. At the moment I was at a 3-4, but told her about the waves of pain. She explained how that worked and why it happens the way it does. Because of my GI troubles I can't really take oral pain meds, so if I get to 10 I should go to the ER and get IV pain drugs. The weight loss is not acceptable so we need to get the GI troubles turned around. She cautioned me about colitis and my increased risk because of the current GI problems. Told me what to watch for. The forehead rash is from the Taxotere and normal. She suggested I keep "Day 6" on my schedule as a day to get IV fluids. Also, this Friday if I still have problems I should go back in for more fluids before the long holiday weekend.

Next I sat for a couple hours getting my long drink. I visited with a guy next to me and we watched as a nurse walked by with a bunch of cupcakes. Right past us to the other side of the room (out of our sight). "That is cruel!" I said to my neighbor. "But if they come back this way I'm getting one of those pink ones!" Sure enough, someone was having their last chemo and brought treats for everyone. That pink cupcake was so delicious. I hadn't eaten for a couple of days so I was hoping since I was rehydrating it would stay put in my belly. No such luck, but it tasted good anyway!

I had hoped getting rehydrated would end the bone pain, somehow. But I was wrong. At the moment I'm at a 3, but just finished a wave that had me doubled over, my knees not wanting to hold me up. I expect it will be back in a little bit. So, if I hit that 10, I can go to the ER for pain meds. But…where is "10"???? Is it when I almost can't walk, or when I can't walk?

There are times I remember I am not the only person going through this. There are lots of women going through chemotherapy to treat their breast cancer. But I have to tell you, when I am writhing in pain, when I cannot walk, when I am shitting acid every 40 minutes…in those very moments the others don't matter to me. I feel horrible for them, for us, I wonder how my friends who have entire lifetimes of this ahead of them…how do they DO this? I feel like a baby. Like a whiner, because I can't handle just this one session. But in those moments, all the others fall away because it is all I can do to get through the horrible moments.

But my doctor reassured me. This drug, Taxotere, is a hardcore chemo drug. That's why its only taken every 21 days, so your body has time to recover in between. Its why it is only given 4-8 times.  Its not a possibility for me to not take the Neulasta shot because its what is keeping me out of the hospital.

I'm lucky. Once again I drew the lucky straw and got the worst of the side effects that come with these drugs. One treatment down, three treatments and 61 days to go. I can do this. (and S. made dinner. Thank you! Need the recipe for those little muffin thingies!)

Treatment Update

Yesterday and today were days 1&2 of my first round of chemo. One down, three to go! A lot of this post is written for those coming behind me, so a lot of details you may want to skip over. I won't hold it against you. ;-)

Dean came with me which was very comforting for my first round. He was only staying for a couple of hours, then going home to get kids off buses, then back to pick me up. My friend Stephanie watched Audrey for us (Thanks Stephanie!) so he could be there for this. It was recommended I have a driver for the first treatment since there is no way to predict how I would react.

First thing was height and weight. The drugs are dosed by weight, so the more you weight, the more drugs you get. My weight went up. GAH!

The room was super cold, but they had heated blankets they were passing around to everyone.

Next they had to access my port. Mine was full of clots so it took a some gymnastics on my part, and a lot of "turn your head and cough" to get the lines into the right position that they could "blast the line open" (nurses words). Finally they were able to get it all flushed out.

The first bag of solution was all my steroids and anti-nausea drugs. That takes about an hour. Next came the Taxotere. This drug has a high incidence of allergic reaction so they have a bag of benedryl hanging "just in case" on the pole as well. About 1/2 way through it was time for Dean to go pick up Audrey and meet the kids buses. About 3/4 of the way through I started having hot flashes. I didn't really think much off it, but tossed my blankets aside. "Wow. Guess they turned the AC off" I commented to the nurse as she was bringing snacks around. That caused a flurry of activity as the nurses came over to look at my face, "Nope. She doesn't look flushed." "No, I don't think she's reacting. Just a hot flash?" "Yes, I think just a hot flash."

I have no doubt that if I did have an allergic reaction, these ladies would be all over it! LOL

Selfie from the chemo chair! LOL I love the necklace I'm wearing. Angela made it for me for Mother's Day and I think its beautiful!

Next up was the bag of Cytoxan. This was a one hour non-event.

When everything was done they flushed my port with saline and heparin and I was free to leave. They handed me a list of visits I have between now and my next treatment, which were a total surprise to me! I will need to reschedule the times for most of them.

I went down to the lobby to wait for Dean and was talking to someone on the phone, when suddenly it was as if someone punched me in the belly. I knew I didn't have long to find a bathroom! Fortunately there was one closeby and that is where I stayed until Dean and the kids arrived. Oh, it was a long ride home! But my lovey, Dean, had already filled my prescription meds so the moment I got home I took an anti-nausea pill and went to bed. I slept for a couple of hours and when I woke up I was able to eat dinner and keep it down. Oddly, I'm craving proteins, when I normally crave carbs! This morning I started back to my isagenix vitamins and a few other things so I can keep good stuff in my body.

This afternoon I had to do back for my Neulasta injection. This helps increase white cell production so counts don't drop, which can land a person in the hospital. My clinic encourages taking Claritin to help combat the bone pain that is the main side effect of Neulasta. This pain can start within minutes or days. It can be non-exisitant, mild to very severe, but there is no way to predict, of course!

Today I've kept taking my anti-nausea meds on schedule and have had only waves. I also take Decadron today and tomorrow which does several things. I have been really sleepy but I think its from the nausea meds and not so much the chemo. I've slept 4 1/2 -5 hours today and still ready for a full night sleep!

Thats it for now! So far so good. I'm told I could stay like this - mostly side effect free - or that tomorrow I could get nailed really hard. I wish there were a way to know. In the meantime, one round down, three to go! 

1 week post op follow up

So, I got all worked up over nothing. Yep. The Oncotype gene test wasn't done. Apparently in pre op my surgeon was just telling me about it, not that they were actually going to do it. If its going to be done my oncologist will be the one to order it.

I am being referred to physical therapy for just a couple of sessions. The lymph node removal under my arm - for which they have to move muscles out of the way - has some slight limited range of motion. Because they messed with the lymph system that puts a SNB patient at risk of lymphedema, so I've been referred to physical therapy for just a few sessions to improve range of motion and get lymphatic massage. (how fun, to get  your underarm massaged. LOL) But, I think this is pretty standard practice with my breast clinic.

Next week I'll be meeting with my oncologist to start setting up my radiation schedule. Discuss what hormone blockers I'll be taking, as well as whether or not I need to have my ovaries removed. I can't take Tamoxifen, which is the estrogen blocker that is most often given so the other option is to remove the ovaries and use a different drug. That and lose weight, because fat stores estrogen and estrogen is what feeds my cancer.

Other than that, all things are good. Incisions look fine. Small infected areas have cleared up without needing antibiotics or anything. Just get it all healed up so I can start radiation.