Beware of Dr. Google

We've all heard it before.  Don't look up your medical problems, symptoms, issues on the internet.  With a couple keystrokes, you'll be convinced you are dying of some horrible disease.  Okay, maybe this is a bit extreme, but we've all had a little of this experience. 

When I first was diagnosed with breast cancer, I made sure to tread very lightly in terms of researching breast cancer.  I joined a couple support groups on Facebook, but I got a little overwhelmed at first so I backed off reading too much.  I slowly learned more about my type of breast cancer... there's more types than I realized.

After I learned about my type of BC, I did a little research on treatment.  This proved to be very helpful because when my oncologist told us what treatment he was recommending, it was exactly what I expected it to be.  Even when I talked to UCSF on the phone about getting a second opinion, they said they didn't want to see me until after surgery because my type of cancer had such a "standard" treatment for chemo.  That's good, I guess.

The "lighter" chemo that comes after the 4 harsh rounds and surgery will still happen every 3 weeks.  Originally, the doctors told me that I'd have to do these 2 meds for a year total (they are also included in with the harsh chemo) which would be about 12-14 rounds.  Now there's new research coming out that I may be able to do it for 6 months rather than a year, and have the exact same success rate of getting rid of and/or keeping the BC from coming back.  The oncologist is the one that told me about this.

I've done a little research and I'm planning to ask UCSF about it.  The research has been done by doctors NOT the drug companies.  This is promising and encouraging to me.  Why would I want to do rounds of chemo, albeit lighter type, for any longer than I have to?!  One of of the potential side effects of these two meds is damage to the heart.  I'd like to keep my heart healthy, thankyouverymuch!  So if I can use less of it, still kill the BC and keep my heart healthy, I'll take that option!

Mind vs body

It's (round 2) post chemo day #5.  I feel a little better each day.  It's the lack of energy that's hard to deal with.  I will admit that I like to take a nap when I can, BUT I don't want to HAVE to take one.  Right now, I have to take them.  Sometimes I can't even sleep, but I know my body needs the rest.

A wise cancer survivor said (I'm paraphrasing here) that it's good to recognize and accept your feelings... that it's healthy.  What I'm recognizing here is that, my mind thinks I can do more than my body does at this point in time.  My mind says, oh just shake it off   You are just a little tired.  You can work full time and do all these other things.  My body says, hey lady- slow down!  You just gave me this super strong medicine to kill these freakin' cancer cells.  Give me a break.  Not sure who is more stubborn, my mind or my body.  It doesn't really matter, though, because I have to let my body make the decisions.

I went to work, today, for about half a day.  I miss being there and being part of things.  But I know I need to take it easy, especially with Abigail's graduation coming up on Friday.  My team of ladies is super awesome and takes care of everything.

Now that I've recognized my feelings, it doesn't mean I have to like it.  It does, however, mean that I have to accept it.  One day at a time....

Taste buds, where oh where are you?

Oh the "joys" of chemo taste changes.  Nothing tastes right.  It's pretty frustrating.  My appetite is strange.  Hungry, not hungry.  Can't decide.  Even if something sounds good, it doesn't necessarily taste good.  It's like being pregnant with weird cravings, but then things don't taste the way they should.  What a disappointment!

Things that are sweet taste fairly normal, but things that are savory taste weird or bitter.  I don't crave a lot of sweet things right now (first time in my life!) so that makes it challenging.  Salty things taste pretty good... my latest favorite is fritos. 

I'm really trying to eat and drink to keep my body healthy.  I know how important hydration is but I'm struggling with that too.  I've tried a variety of drinks... they've told me any kind of clear-ish liquids are good.  I can't drink coffee anymore- just tastes weird.  I've switched to tea in the morning and it's just not as satisfying, but oh well.

All in the name of getting healthy!  Sorry this was a bit of a rambler....

Pleasssssseeeee give me chemo

Before every round of chemo, I have to do bloodwork to make sure my blood counts are good and that my organs are handling the chemo.  I did bloodwork on Monday morning which was apparently too early.  My white blood count was still kinda low.  I emailed my oncology doc (love that he emails!) and asked if I'd still be able to do chemo.  He said to repeat the bloodwork on Wednesday  morning (today) before my appointment with him.

I've been really stressed about whether my lab results would allow me to do chemo.  It's probably weird that I really WANT chemo tomorrow.  I want to kill this cancer and move on with my life. I'm not a procrastinator.... just want to do it and check that date off my list.

We got the oncology department right at 8:00 this morning to do the bloodwork so it would be ready for the doctor at my 9:20 appointment.  We had about a 45 min break between the labwork and the doctors appointment so we grabbed coffee at Ramone's down the street.  We met the owner of Stone Cold Chillin' and picked up the dry ice that I need for the cold caps.  They seem to be working so far... no hair loss yet.

At the appointment, we found out my white blood count was still a little low, but the doctor said he'd make an exception for me to have chemo tomorrow since it was on the rise, and I feel pretty good.  Yay!  Chemo #2 will be slightly shorter.  One of the drugs they give me will be a slightly lower dose and will take less time to infuse.

Thank you everyone for all the good wishes, prayers, messages and cards.  It makes this journey so much easier. <3

Giving things up is hard

One of the the things I've struggled with the most during all this is giving things up.  Before my diagnosis, I was heavily involved with Abigail's senior class Safe & Sober Committee and J.T.'s 8th grade class trip/dance fundraising.

I've had to step back a little from helping on these committees and it's so hard for me.  If you know me well, you know that I am not a flake.  I follow through on what I say I'm going to do.  By having to step back, I feel like I'm being a flake.  Even though everyone tells me, I need to take care of myself, and not worry about these committees, I still struggle.

For Safe & Sober, the committee is feverishly getting things together and I feel helpless.  I want to help and there's a limited amount I can do, without wearing myself out.  It makes me sad that I'm missing out on a lot of this final process.

I know there's not a lot that I can do about this situation, but it's still very frustrating.

Tough week

This has been a tough week.  Last Friday, I felt the worst I'd felt since I started chemo. I ached all over and had a slight temperature.  I stayed home, hoping I'd feel better by the end of the day.  Unfortunately, that wasn't the case.  I took a nap in the afternoon and woke up with a fever.  When you're a cancer patient, a fever is bad.  We'd been advised to call the office if I ever had a temperature above 100.4.  After my nap, my temperature was jumping around, but ranged from normal to 102.  I called the oncology office and got the on-call doctor (it was after 5pm on Friday).  Bad timing, I know.

The on-call doctor, who was not my regular oncologist, said I needed to go the E.R. so they could check me out.  He wanted me to go to St. Joe's, not Redwood Memorial, because I was a cancer patient.  He said Redwood would probably send me to St. Joe's E.R. anyway.

We got there about 6:45 pm.  I'll save you from all the waiting time and details, but they ordered blood and urine tests, and a chest x-ray.  The chest x-ray was to rule out pneumonia.  My temperature was 101 when they checked it.  Once we got into a room, they started me on IV fluids while we waited for test results.

The E.R. doctor said I was "neutropenic" which essential means that I had no white blood cells and therefore had no way of fighting off any infection.  They couldn't find that I had an infection, but they started me on IV antibiotics in case something was lurking.  The doc said I needed to be admitted to the hospital until my WBC (white blood counts) came up.  We asked a LOT of questions to make sure it was truly necessary.  I wasn't very happy having to stay.  I'll admit that my eyes leaked a little. I just wanted to be home in my own bed.

We finally got transferred to a 2nd floor med/surg room about 1am.  Not quite sure what took so long.  I fell asleep while we were waiting.  We were able to get a <insert sarcasm> super comfortable recliner for Andy to sleep in.

I ended up being there til Monday about noon and the days kind of run together.  Luckily (and painfully) they had accessed my port in E.R. so I could get fluids and antibiotics through it, and have blood drawn from it.  I felt better started Saturday so it was just a waiting game for my WBC to come up.

We went for walks in the hallway every couple of hours.... dragging my IV pole along with me.  Must've been quite a site.  One time we got to go without the pole and it felt like something was missing.

The oncologist came by each day.  He offered an injection that would help with my WBC.  I was a little hesitant at first because it can cause flu-like symptoms, body aches, etc.  I was scared about that, but I decided to bite the bullet and just do it.  The injection is called Neulasta and it goes in your belly.  That freaked me out too.  It wasn't really that bad.  It just goes in the belly fat and it's a small needle.  So I got one injection on Sunday afternoon and another one on Monday before we left.

My husband is amazing!  He stayed with me each night.  The only time he left was to run home to get stuff and see the kids, and to run to Ramone's to get me mexican hot chocolate and a scone.  He slept in a squeaky recliner.  He's a much better nurse than I am.

I'll admit it was kinda sad to spend Mothers Day in the hospital.  The kids brought us breakfast, and my parents came by, so that helped make it a little better.  Maybe I'll get a do-over Mothers Day.

Hopefully this will be the only time that this happens.  I'm getting a preventative Neulasta shot next time so that should help.  That was my first overnight stay in the hospital (except for having babies).  The nurses were amazing.  The food wasn't too bad.  But if I never stay there again, that's just fine with me.

Why am I blogging?

I consider myself a fairly private person.  Sure, I share things on social media, but not to the extent of some people.  I've gone back and forth about doing this blog.  It's sharing some very private things about my self and my BC journey.  When I first started writing, I wasn't even sure I'd share it publicly.  However, I feel like I need to.  There's so many benefits to sharing.

First of all, it's a journal for me.... something I can look back on.  I know I won't remember everything that happens along the way.  That's probably not a bad thing though.  This blog also allows me to answer some questions that people have had for me, all in one place.  And not have to repeat myself.  Not that I mind answering questions, but it's nice to not have to keep saying the same things over and over.

Probably the biggest reason I wanted to do this blog was to help others that may face this journey.  I've googled "breast cancer" a time or two ;-)  and I've come across some very helpful blogs along the way.  If I can help someone else, while I'm going through this, it makes it a little less tough.

One thing I've definitely learned in the short part of my journey thus far is that everyone's experience is so different.  It's so hard to know what to expect.  I tell myself daily that it's one day at a time and I can do this!

Chemo #1 and cold caps

Today was the first day of chemo.  I was pleasantly surprised- it wasn’t that bad.  I didn’t really have any reactions, except some flushing.  We were at the cancer center from 8:15am til about 4pm so it was a long day.  It went by pretty quickly though.  Andy was with me the whole time and was super amazing!  My mom came for a couple hours and Sandi came too.  It meant a lot to me that they were there.  The first 2 meds, perjeta and herceptin, took a total of 3 1/2 hours.  It should be infused a little more quickly on future sessions.  The last 2 meds, taxotere and carboplatin, were the harsher stuff. They took a total of  1 1/2 hours.

These last 2 meds are the ones that cause hair loss so we started the cold caps about an hour before the taxotere started.  I had to keep one on until 3 hours after the carboplatin was done.  It has to be changed out every 30 minutes so it keeps the scalp cool.  They are about -32 degrees when they are put on (yes, I said negative 32).  There are several cold cap brands but I chose Polar Cold Caps.  We had to get 80 pounds of dry ice for today to keep them super cold.

I’m tired tonight but I’m not sure it’s any more than usual.  It was a great first day of this attack on my breast cancer!

Range of emotions

I know, without a doubt, that a range of emotions is completely normal. Before today, I’ve remained pretty positive with a little fear and anxiety mixed in.  Today was the first time I experienced anger- not sure I’m really mad at my body for betraying me...more pissed off at the situation.  Like I don’t have time for this shit.  I wanted to wipe those emotions away and not feel them.  But I didn’t.  I let myself feel which is hard for me.  Really hard.  I know it’s ok to feel.  Giving myself permission to feel made the feelings dissipate a little quicker.

Today is THE day.  The day that I start the attack on this breast cancer.  I’m sitting in a recliner right now receiving the pre-med infusion.  Anti-nausea meds and saline fluids.  The real stuff starts soon.

Ready or not?

Are you ready for this adventure?  Someone asked me this the other day.  Ready, or not, it's coming our way.

I've had a lot of people ask how I am feeling and/or how I am doing.  For the most part, I feel "normal."  At least physically.  I don't know how to describe how I feel emotionally.  Some days are better than others... hell, some hours are better than others.  I'd say 90% of the time I feel strong and positive.  I know I can do this.  The other 10% of the time I feel anxious, scared, worried, and downright freaked out.  I can usually revert back to me "cancer picked the wrong girl- I'm going to kick it's ass" attitude fairly easily.  But those anxious feelings seem to be creeping up more frequently in the last couple days.

This week it's become a lot more real.  Tomorrow, I have an appointment with the oncologist, the chemo education appointment, and a tele-medicine appointment with a UCSF genetic counselor.  Busy day.  And then the real fun begins- Chemo round #1 starts on Thursday.

The genetic test that I had done basically came back inconclusive or the technical phrase "variant of unknown significance."  The oncologist wanted me to do some genetic counseling for my future planning.  I'm happy we can start with a tele-medicine appointment, rather than going to San Francisco right now.