How to kick chemo's ass

Would you like to know how to kick chemo's ass?

Then you have come to the wrong blog because I don't really know! I do know that chemo does a pretty good job of kicking MY ass, but I rally around day 11. ;-)

In my last cancer related post I mentioned that things were not so good. The first 10 days after treatment I lost 11 lbs, had to get IV fluids three time and had diarrhea every 30-60 minutes - round the clock - for 12 days. But I made it through and on day 12 I was starting to feel close to myself again.

I had been told that on day 14  magic switch goes off and I would start loosing my hair. They were right, I just assumed it would be the hair on my head first! Around day 12 or so I started sneezing nasal hairs. That was pleasant! LOL On day 14, sure enough, I started loosing my hair, except that it was pubic hair, followed a couple days later by my armpit hair. The hair on my head started falling out a tiny bit on day 16 and by day 17 I had patchy hair loss. On day 18 I shaved it down really short. (because it wasn't short enough before. LOL)

This picture was taken yesterday, day 19. 

I have large patches gone on the side of my head. Of course, 

its the gray hairs that are still firmly attached! 

The back of my head has many dime-sized patches gone.

(Note to self: selfies from the side are tricky!! 

And I have no idea what the blue mark is on my 

mouth, its not on the original picture. Weird! ) 

Yesterday the hair on ONE of my legs was gone. Today its gone on both legs and the hair on my arms is starting to fall off. Its just all really odd!!! You touch it and it just falls off. My eye lashes have thinned out and I expect them to be gone soon. So far my eye brows are still intact. 

On Thursday (June 5th) I'll be having my second round of chemo. I met with my oncologist yesterday to get my counts and go over some things. The side effects I had last time were pretty severe, the most concerning being the GI related stuff and my doctor is worried about me developing colitis. 

I need to clarify since there is some misunderstanding. I am not AT ALL nauseous. I get three different anti-nausea meds via IV with my chemo, plus oral steroids for the next two days. My GI problems are all diarrhea. The two anti-diarrheals I took last time didn't really do anything for me. Well, maybe they decreased the episodes to 10 times a day instead of 20+. I think what helped more was three consecutive days of IV fluids which allowed my body to recover a bit. 

Because the two drugs I'm getting have a cumulative effect my oncologist believes my side effects could be worse with this second round so we've made some changes. This time I'm going to be starting oral steroids the day before treatment, (which is tomorrow)  then I'll have the IV steroids with chemo, then orals again for the next two days. I'll also start the anti-diarrheal meds the day before. On Friday when I have my neulasta shot I'll get a bag of IV fluids and then again on Monday. 

As for the bone pain, that is caused by the Neulasta shot that I get on Friday. There isn't really much we can do about it, but if it gets too bad I won't wait so long and I will go into the ER for some IV pain meds. At least I know that only lasts 3 or 4 days and then its done! 

I'm pretty much dreading this round, but you can bet I'll be ticking the days off on the calendar knowing by day 10 or 11 I'll be feeling much better and will get 10 really good days. And after this round I'l be half done!! After that? 35 radiation treatments! Woot woot!

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!)

Breast Cancer and choosing treatment

I walked into the oncology clinic and found it hard to resist the urge to turn and walk back out. Why is this even part of my vocabulary? To the left: the waiting room. To the right: patients in chairs getting their chemo. I checked in at the desk, filled out the necessary forms then buried my nose in my phone. I didn't want to look around. Everyone in the waiting room was sick, or waiting for someone who was sick. All these people have cancer? How many people around the world, on any given day, are having chemo?

I should not be here. I don't want to be here. Never in my life have I been in such a depressing waiting room. Wait, yes I have….lets not go there.

I normally have very low blood pressure, around 75/60 is pretty typical for me. But today? 130/90. It made me cry. Why was I crying? Because it was a sign I was letting cancer get to me and I hate that I'm letting it get to me. 

Today I wanted guidance.

I wanted to meet with my oncologist and be told "All your tests say X, and so the treatment will be ….". 

I did get guidance. My doctor was compassionate, caring and exceptionally patient, filling me with information and understanding of all the tests that have been done. 

We know I need to have my ovaries taken out. My cancer is estrogen +, which means estrogen is what feeds it. Most women can take estrogen blocking drugs, like Tamoxifen, to manage that. Unfortunately I can't take that medication. Instead I'll have my ovaries removed. But since there is still estrogen in the body I will take a different drug that is not as strong. I will also have to take drugs to improve my bone density since it causes depletion of calcium, especially being put into instant menopause. 

I am young for this type of cancer. I need to have genetic testing done to make sure I don't have BRCA 1 or 2, which are inherited forms of breast cancer. If I have either of the genes I will have a double mastectomy done. If not, I will leave them alone. Although my breasts are the only feature on me that I actually like, I'm not that attached to them. 

Now for my risk of recurrence. 

Whether or not chemo will affect my risk of recurrence is a coin toss. (read about the Oncotype test here) I'm in that 'intermediate' group of women who scientists don't really know if the benefits of chemo are worth it. The decision of whether or not to fill my body with poison is up to me. 

Because I can't take the estrogen blocker Tamoxifen, my risk of recurrence doubles, putting me somewhere around 25% chance of developing breast cancer again. 

1 in 4. 

Since my original odds were 1 in 8, just like the rest of the world, I have just doubled my risk from the general population. And since I don't really do very well when the odds are not in my favor, I want to treat this as aggressively as possible.

Dean and I have talked, and I have talked with my mom, and we all agree that if I don't do chemo and go on to develop cancer again down the road, I will wish I had done chemo. As it is, I will spend the rest of my life waiting to hear the words "You have cancer" again.

I'm pretty sure this is probably one of the most difficult decisions I've had to make in my life. 

And so it is decided I will start chemo next week. I'm lucky. So far I get to keep my breasts. 

We're dealing with it.