Control

I have had an "exciting" couple of weeks since my last post.  My fevers apparently were because of a UTI that my body is fighting.  Which, is crazy for many reasons.  I had no symptoms and no reason to have a UTI, it just happened.  They put me on an obscene amount of antibiotics and I moved on.

Then a week later I went in for my weekly chemo and both my blood counts (white and red) were too low to be able to give me chemo.  Normal range for WBC is 4.0-11.0 and mine was 3.7.  White blood cells are the infection fighting cells.  Normal range for hemoglobin is 11.7-15.7 and mine was 8.1.  Hemoglobin act as the vehicle to drive oxygen around your body.  So the last week I had been very out of breath and walking up stairs was horrible.  I would stand up and get light headed, and I was so exhausted I could hardly keep my eyes open.  It was very discouraging because I assumed this was the fatigue from the chemo, and I couldn't manage how I was going to manage 9 more weeks feeling this way.

BUT, when my labs were drawn pre-chemo, they paged the doctor and asked her if I could still get it.  She told them that I would need a shot every day for three days to build the white blood cells up, and for my hemoglobin I would be scheduled for a blood transfusion, and I could go on with the chemo.  This was last Thursday.  I took the shot every day for three days, it built my white blood cells up (and my body HURT from making them).

On Tuesday I went in for the blood transfusion.  When I went in they re-drew my labs and my hemoglobin was 7.8 (down from 8.1) and my white blood cells were 19!!  I think the shots worked, no wonder my body hurt so bad, my bone marrow was freaking out!

Everyone kept telling me how much better I was going to feel after this was done.  So, I was pretty excited to be there and felt grateful that I was able to do this to feel better.  This was SO MUCH BETTER than feeling the way I was feeling for 9 more weeks.  It took about 6.5 hours and was totally easy.  They put two bags of blood right into my port.  I was tired when I left, I think from sitting there for 6.5 hours, but that night I did 4 loads of laundry, up and down the stairs.  Not once did I feel like my head was going to explode, not once did I get light headed.  It was pretty awesome.  Again, I was super grateful.  Thanks to everyone who donates blood!  :)

Today I was scheduled for chemo again.  I was nervous for this appointment because I've been waiting for the results of the BRACA genetic test (it hasn't come back yet) but I wasn't nervous at all about being able to get chemo or not, because of everything we had done to get my numbers up.  Turns out, they tried to cancel chemo this time because my liver functions were three times what they should be.  I felt like I was going to scream and throw things, for real.  I have no control over this cancer beast, and it's starting to piss me off.  I try so hard to do everything I can to stay on track, to be good to my body, to have a good attitude - and I absolutely cannot control this.  This is not easy for a control freak like me.  Typically if something is wrong, you do something to change it.  Cancer just doesn't play by the rules.  Not to mention, hearing now that my liver is unhappy just really brings to light how terrible this is for my healthy body.  Grrr...

So, after all was said and done, they gave me 60 whatever's of my chemo instead of 80 whatever's.  She said this is all because of my dose dense schedule.  Typically when people go in every three weeks for chemo their body has a chance to heal a little bit in between.  But they're hitting my body so often with this poison it just doesn't have a chance to recoup.  So she's hoping next week it will be a little bit better because of the decreased dose.  But, she said chances are good I'll need another transfusion or two and chances are also good that I will end up having to skip a cycle at some point because of my white blood cells.  So, I take a deep breath and I realize it's out of my control.  I can't do anything to control any of these things, and I have to be at the mercy of the people that are there to make me better.  Deep breaths and lots of meditation practicing.

The good news is, I physically feel very good.  Even though it doesn't sound like it from the post, I also feel pretty good mentally.  I'm frustrated, but I'm not feeling down or dark.  I feel like I can see the end.  Letting go of some of the need to control this is going to be a huge feat for me, and I'm working on it.

8 cycles down, 8 to go.  Halfway there!!!! 

Fevers and ER

I had my first round of Taxol the Thursday before last.  That Wednesday (a few days ago) I started getting a fever while I was at work.  I left work around 4:00 and got into bed.  One of the things that my doctor has drilled into my head is that if I have a fever of 100.5 or greater or chills, I have to call the the clinic or the after hours on call doctor. 

By 7:00 that night I was under 3 blankets and shivering uncontrollably.  But my fever was only 100 or so...which continues to confuse me.  A fever of 100 should not cause chills that bad, is nothing normal in my body right now?  By 1:15 am, my fever was 101.3 and the on call fellow told me I needed to go to the ER.  So, my mom came and picked me up (40 minutes later because she had to shower and then got out of the shower and realized she forgot to rinse the conditioner out of her hair and she had to stop and get gas.....I think she was having a hard time wrapping her head around the fact that she was driving me to the ER).

At the ER they drew my blood, gave me a chest xray and started an IV antibiotic.  My WBC (infection fighting part of my blood) was 4.1, and 4.0 is where normal starts.  But, being in the middle of chemo that wasn't surprising.  But something else in my blood test made them think there's a possibility of a bacterial infection, possibly in my port.  But I won't find out for sure until Monday because they have to grow the cultures.  I was there from 2:00-5:30 am, got home at 6:00 am and then was back there at 9:00 am for more chemo.  The doctor and I talked a lot about it, she made sure I was up to it and we went forward with it.  During chemo, I developed another fever.  Sigh.  I was shivering again but I kept telling the infusion nurse it was adrenaline and I was fine.  She walked away and came back with my doctor - I laughed and said I can't believe you told on me!!  So, she gave me a different antibiotic and some Tylenol and sent me on my way.

Friday I woke up and felt great and Elliott stayed home with me instead of going to school (Cameron really wanted to too, but it was show and tell day, which is like the best day of the whole week...so I picked him up 1:00 instead).  Erin and Nolan came over to play with us, and my dad and Marilyn came over.  I made soup, we had a great day - and I felt great all day.  Then that night at dinner time - another fever with horrible chills and under multiple blankets.  It went away with Tylenol, and then at 4:30 in the morning it was back. 

I hate to state the obvious - but this sucks.  This chemo has been easier, so I'm going to have mystery fevers to deal with.  It's scary to not know what's going on in my body.  It's entirely possible that when my blood work comes back on Monday there will be no infection anywhere, and we won't ever know what was causing the fevers.  I'm going to decide that the fevers are done as of right now, my blood work will come back and say it's all good, and I'll move forward with 10 more weeks of tolerable chemo.

Yah, that's right.

I'm back!

I hope!

I had my first round of Taxol, the new chemo I'll be receiving weekly, on Thursday.  This is WORLDS better than the first two types of meds I received.  Last round I pretty much got every single side effect that was possible.  It was a dark, yucky place to be.  I was depressed and scared and down.

This week I am the exact opposite.  I feel like I can see the light at the end of the tunnel.  I'm trying to remain cautiously optimistic because I do have 11 more rounds of this to go, but I really feel good.  I experienced none of the side effects that I did last week, my energy is up, my mood is up....wahoo! 

The doctor said the biggest side effects from Taxol are neuropathy (tingling/numbness on hands and feet, which in 90% of cases people will get full sensation back) and nail beds that loosen.  My biggest fear is if the neuropathy gets too bad they'll stop treatment, which I won't be okay with.  My oncologist actually tried to cancel my chemo this week because of some of the side effects that I was experiencing, but I successfully talked her out of that.  :)  I like to keep on schedule with what the millions of dollars and super smart scientists have decided is best for me.

They gave me 50 mg of Benadryl in my IV with the Taxol because of the risk of allergic reaction to it.  I didn't like that - it made me feel woozy and knocked me out.  Which, would've been fine if I was then going to bed for the night - but instead they kicked me out 40 minutes later and I had to somehow function.  So, they're going to cut it down to 25 mg next time, but I will have to have it with every round. 

And, I think that pretty much says it all.  Getting knocked out from Benadryl is my biggest complaint this week.  Party time.

Moving forward!!

I am cancer right now

So, this is what I expected and feared - and thought I was somehow exempt from.  I'm miserable.  My treatments have gotten worse each time, or at least the days after have.  I finished my fourth and final round of dose dense A & C on Thursday, and I'm down for the count.  Saturday I couldn't get out of bed, couldn't swallow, couldn't eat or drink much....couldn't really function.  Sunday I started to feel better, and then last night I got a cold.  I already was having a hard time swallowing (the chemo affects your entire GI tract, from your mouth through your throat to your esophagus to your stomach) and now I have a cold on top of it.  Miserable.  There's just no other way to put it.  My energy is gone.  I sit on the couch and it's everything in me to keep my eyes open, even though I'm not tired enough to sleep.  My head is foggy and heavy....etc and so on and blah blah.  So, this is what the anticipation was all about. 

I feel like I look like cancer now that I feel like cancer, which in turn makes me feel worse.  I'm missing work, I'm not pulling my weight around the house, I'm not on the treadmill, I'm not at yoga....I'm just surviving right now.  I keep trying to feel grateful that I had so many good weeks that could've been like this, but part of me feels like it got my hopes up that I was somehow going to sail through this intense treatment and now I haven't. 

Before every chemo, they put heparin in my port to make sure it's clear.  On the second treatment, the smell of the heparin started to make me sick.  The third treatment I had to wear a mask lined with peppermint chapstick so I couldn't smell it.  The fourth treatment, I got sick and cried just by the nurse accessing the port to draw my blood.  It's the anticipation of what's to come.  I wonder how many things I'm not ever going to be able to smell again because it will remind me of this time (the soap in my house, the "shampoo and conditioner" I use on my head right now) bagels....well that would be fine if I never ate another bagel I guess. 

I start the T part of my treatment next Thursday.  One med, which everyone promises me should be better.  However, they promise me that the nausea won't be as bad, which hasn't been one of my biggest side effects, so I'm trying to keep my expectations in check.  Constantly trying to keep my expectations in check. 

Moving forward. 

Always changing

At my last chemo appointment my oncologist mentioned that my next treatment will end this cycle, and we're on to the next.  I literally slapped my hand on my leg and said "WHAT are you talking about??" 

The plan I had heard (and, my sister heard at the same time I'd like to just say) is that I have 8 rounds of these two meds every other week, and then 4 rounds of one med every week.  For a total of 12 rounds.
Here is the actual plan:  4 rounds of these two meds every other week, and then 12 rounds of one med every week.

TWELVE rounds EVERY WEEK. 

I have to assume the bad news is obvious.  I can't imagine going in for chemo every week for 12 weeks. 
The good news is that I'm being told that these two meds I'm getting right now are the difficult ones.  These two are the two that make you feel bad.  So - I only have one more of those!  Yay!

The cycle coming up is called Taxol and apparently it's not as bad as the first two meds I've been receiving.  The doctor said that oftentimes women have to stop working for the cycle I'm in right now and then are able to go back to work during the Taxol.  So, another silver lining I'm going to go with. 

It's important to mention that nothing has changed in my treatment plan.  It's not as though they saw something and decided they needed to switch it up.  This has been the plan the whole time, we just somehow miscommunicated (and by that I mean she told me wrong).  :) 

I'm not going to lie, I'm ready to be done with this cycle.  I hope the next is actually somehow not as bad...

General update

Tomorrow I go in for my third round of chemo.  3 down (and I refuse to say how many left because it's discouraging.  So we stop at 3 down).  Since it's Valentine's Day it only seems appropriate (not to mention ridiculously romantic) that Scott comes with this time.  This will be his first time coming...a Valentine's Day to remember I'm sure.

There seems to be a pattern in regards to how I feel now....which I hate to even say out loud because this round will be completely different and will shoot to hell all sense of control this pattern has given me.  But so far - I'm sick the first week after chemo.  I'm not throwing up, but I'm sick. I have little to no energy, I'm shaky, my appetite is off, I'm nauseous, my taste buds are off, my mouth hurts, my head hurts, my brain feels empty except when I'm feeling miserable.... and honestly the list is endless.  The thing about chemo (for me) is that it hasn't been any one symptom that's bringing me down.  It's the countless number of ways that it's making my body not my own that's really difficult. I just feel bad and weak and emotional for that week or so.

I got to the point this time where I told my sister I couldn't do it anymore.  I don't have it in me, I'm not strong enough, I give.  I'm done.  I can't do it anymore.  Her response:  You can and you will, and you are.  Funny enough, while I was giving birth to Elliott (naturally, mind you) I said I can't do it anymore.  Her response:  You can and you will and you are.  Hmph.  I'm not sure who she thinks she is.  So somehow, a week post chemo comes around and I start to feel like I'm going to make it, and maybe my sister is right.  I have another one behind me now that I never ever have to do again, and I'm starting to feel better.  Then usually by the weekend (9 days post treatment) I feel worlds better - and so I have a week or so where I function relatively normally before I go in for more and it starts all over again.

My buzz cut is still falling out.  It kind of sucks that Scott got to shave his head and be all supportive, and now his hair is growing in nicely and he's gorgeous, and I get stuck with a mostly bald on the top but a patch in the front and a buzz in the back hairdo.  I told him I think to REALLY be supportive he needed to get my exact hair do.  He laughed out loud and said "oh hell no."  See?  Not very supportive. 

Before I started treatment I figured I would wear my wig most of the time, sometimes I'd wear hats and I'd probably never wear scarves.  Turns out I haven't worn my wig once, I sometimes wear hats and I'm mostly wearing scarves.  The wig itches and makes me feel...wrong.  I have no idea how to explain it.  When I put it on and look at myself I feel sad.  When I put a scarf on (which, my scarf obsession I've always had has sure come in handy!) I feel better.  I am mostly bald around the house, except when I sleep because I'm freezing.  

One day this week I was getting ready in the bathroom and Cameron was in there with me talking.  I went to grab my scarf to wrap my head up and he said "Mama, I kind of just like you just the way you are.  I think you look beautiful just with your bald head."  I was absolutely blown away.  I can tell by the way they look at me that they literally don't see my crazy bald head, they only see me.  Which is more than I can say for myself.  When I asked Elliott if he was comfortable with my bald head his response was "Yah sure!  I'll tell you if I change my mind."  Ahhh....typical response for both of them. 

As always, the amount of support we are receiving is mind boggling.  I wonder if people realize just how much it means to us.  It really feels good to know how many people are sending me their positive thoughts and prayers.  Every single message I receive is touching and humbling.  It seems like I can't say it enough:  thank you thank you thank you.

So - round three tomorrow.  Moving only forward.

All about my hair

I bought my wig from a breast cancer survivor who said her hair started falling out on day 13 (after her first chemo).  On day 13 my hair started falling out a little bit, and on day 14 it started falling out in handfuls.  It was everywhere.  I was at work, and actually left at noon to work from home because I couldn't stop crying.  I cried for so many reasons....I was so mad at the cancer, again.  I was scared of what I was going to feel like bald, and mostly I was disappointed in myself.  I didn't want to feel this way about losing my hair. I wanted to feel strong and worried about more important things, not my silly hair.  Everyone told me to just shave it - and I literally couldn't imagine just taking a razor to my hair (or having anyone else do it) and just shave it.  It goes against nature.

So I went to my second round of chemo with a trail of hair behind me.  Then, I left chemo and went to have pizza with my family - and then to Juut salon to shave my head.  The girl that shaved my head was so beautiful - in all senses of the word.  Her mom is a 5 year breast cancer survivor, and her best friend is just finishing her last round of chemo for breast cancer.  She turned me away from the mirror as she shaved it, and then turned me away from my sister too.  She was a mirror of how I was feeling.

I didn't look in the mirror for several hours.  I was physically hurting.  I spent the first part of my life hating everything about my hair.  I was a redhead, which made me different, and when you're a kid different is not necessarily good.  I always wanted my hair to be anything other than it was.  Then, I hit my 20's and I WAS A REDHEAD!!  :)  I grew to love it and feel fortunate for it.  Suddenly be different was good.  And so really my hair has been a major source of my identity, good or bad, for my whole life.  And now I'm bald, because of cancer.

When my babies saw it the first time, Elliott just instantly wanted to rub it, with little emotion involved.  Cameron said "I really like it mama".  And then followed me around, all night long.  He was touching me every minute.  In private an hour later he told me he doesn't really like it, but didn't want to hurt my feelings.  I told him I didn't really like it yet either, but we would get used to it together.  Scott seemed to really like it, I think he was excited for it!  :)  That night, he left to go to yoga and called me 20 minutes later and said he missed yoga and was on his way home.  When he walked in - he was bald.  He had shaved his head too.  So sweet.  And surprising.

I'm already doing better today.  I'm past "how am I going to do this" and on to "it is what it is."  I have cancer, I'm going through chemotherapy, like too many women before me and after me.  Part of that process is losing my hair.  It's temporary, I can't hide it and I can't control it.  I am trying to focus now on how many steps of this journey are already behind me, and there are a lot.  Just moving forward, slow and steady.

Here are a couple of pictures - the first one was at the salon.  I thought about not posting it, but this is a journal of what I'm going through - and this picture was part of what I went through.  The second one is of my lovely husband and I, when I was at a much better place.