Monday, August 24, 2015

Guess What Day It Is...

Yes, It is Hump Day.  Today I received my 5th out of 9 Taxol treatments.  I wish that meant things will get easier, but I don't think so just yet.  So far things are going pretty well.  These treatments are not as brutal as all of the other treatments previous to them.  I kind of have an expected schedule now.  On Monday, I go in for treatments at 10.  The pre-medications include a lot of Benedryl and Steriods. The Benedryl makes me sleepy that day, the steroids make me unable to sleep that night and the next day. Wednesday the more unpleasant symptoms set in.  I get a sickish feeling in my stomach and my mouth tastes terrible...kind of like sucking on Cold Eeze all day or sucking on a key or something. And let's not forget the fatigue and shooting pains.  This lasts and increases through Friday.  Saturday feels a little better and by Sunday I am feeling closer to normal.  Then Monday comes and we start all over.  Other symptoms include numb and tingly, sore feet.  While the symptoms are annoying and sometimes quite unpleasant...I am so pleased that I feel significantly better than I did during the four AC treatments and the one Taxol. 

It is true that the Taxol treatments compound upon each other.  With each passing week, the symptoms get more intense.  This last week I had a new sensation...three of my toes on my left foot and my left thumb felt like they were being burned by a fire.  It was quite what do you do when your toes are burning and there is no way to remove the fire?  Fortunately it didn't last long, but lingers mildly still.  I've had some intense headache shooting pains that I could live without as well.  I have some weird bumps on my hands that look like bug bites that started about a month ago but increased in the past few days.  Not sure if that is taxol related or what.

My blood counts are low, and I was worried that I might not be able to keep getting weekly treatments.  I am so done with this and want to just plow right through these treatments and get them over with.  So I am praying that my blood counts just won't go so low that I have to delay treatments.  Today I was almost sure they would be too low...but I am grateful to say, they were not.  

My hair is growing back.  I had been shaving it for the past few weeks thinking it would fall out again, but contrary to what I read on the internet, the doctor says it probably won't fall out I decided to LET IT GROW!  As you well know, I don't mind being bald.  In fact I quite like it.  I am also good with having hair, however this transition phase is an unpleasant but unavoidable phase.

Here is about 1 weeks growth:

And about 2 weeks

It is a bit gray and I did dye it on Saturday a nice auburn fuzz...not feeling like taking a photo right now, but is just darker. I like it a little bit better, but it will be nice when there is some length to at least brush. It is a funny thing to note that I like brushing my hair.  While I was bald, I would look at a brush and think of brushing my hair, sometimes I even brushed my bald.  I will like having hair to brush again.  

I've gained about 10 pounds since starting. unfair!  I have made it my goal to lose one pound a week to the end of the year.  So far so good...2 weeks...2 pounds.  I am exercising at the gym 3-4 times a week.  Usually walking, sometimes even running.  I have run a mile in about 13 1/2 minutes.  The time is not great, but pretty good all things considered.    Sometimes my feet and bones pay the price of my exercise.  I just want so badly to go back to what used to be normal. 

My taste buds are pretty dead.  I think they died completely this weekend.  Now I just can't taste much of anything.  You'd think that might help me lose weight...we'll see.  It really isn't a big priority...just a goal that would be nice.  Truly it is not the most important thing. 

I am learning and growing so much.  I have learned so much about compassion.  People come to me and tell me their stories and experiences with cancer and my heart feels for them.  It didn't really used to so much.

I appreciate how much kindness has been shown my family.  For over 4 months wonderful people from my ward and neighborhood have brought delicious meals to our home and have come once a week to clean our house.  Even when my treatments were delayed and I was feeling fairly well.  I cannot tell you enough how much it has been appreciated.  What would I have done without their help and service?   

Especially what would I have done without the love and support of my husband?  Ron has been so strong and kind and supportive through such a hard time. From listening to me talk incessantly about breast cancer for months (I can get quite intense) to being there for me when I was really sick and worrying about me when I was in the hospital. Not to mention going to work every day to support us and pitching in at home when he gets home.  He has done this with hardly any complaint. (He did ask me if we could talk about something else a time or two :) ) He is so very strong and deserves some well as prayers.  He has been amazing!

Sunday, August 2, 2015

Here we go...again!

I can't even begin to express enough how wonderful it has been to feel good again.  Being terribly sick for months is grueling, and I was beginning to become very short sighted, like nothing in the world mattered except that I stop doing whatever was making me so sick.  I have heard or read about people who just beg for the treatments to stop because they believe they can take no more.  A good support system is often the key to helping someone get through chemo.  It kind of reminds me of that scene in Harry Potter and the Half Blood Prince where Harry and Dumbledore are in the cave and Dumbledore instructs Harry to force him to drink the "drink of despair" that is in the basin where the horcrux is.  He tells Harry to keep feeding it to him no matter how much he begs him to stop, and Harry does so all while speaking words of encouragement that soon it will be over. 
                                              This was always a disturbing scene to me.

So I got a nearly 2 month reprieve from treatments and my life went back to "normal".  Not just normal, but an appreciate-every-day kind of normal, enjoying life like I used to.  I was amazed when Ron, Sarah, Rayden and I  went to Oak Creek that, even in a much higher altitude,  I could go for a walk, pick black berries, ford streams and climb hills without becoming abnormally breathless. I marveled at how good it felt to take a deep breath without restriction and without coughing.  We also got to go up to Utah to spend time with family and friends, and and once again I was so pleased to feel strong and healthy.  Truly it has been as good for me mentally as it has been physically to just feel good again.

All that said, it would be an understatement to say that I was a bit apprehensive to begin treatments again.  I was optimistic that it would not be so bad this time.  I have read a lot about Taxol treatments and have found a number of articles that indicate that does dense treatments of Taxol are no more effective than the weekly, lower dose treatments.  However the weekly treatments have fewer and less intense side effects.  I am all for that.  However, knowing how things went last time, I was a bit afraid of what was ahead.

On Monday I went to the new clinic.  The were very nice and explained everything I needed to know.  Once I was re-educated, I asked about pain and how much I should expect and consider normal. She told me that I shouldn't feel any pain.  That always confuses me.  The nurses and doctors seem unaware that Taxol can cause extreme pain, yet when I read online of people's personal experiences, they almost all mention pain like I experienced.  So I continued to press the issue.  (I am truly afraid of that kind of pain.) The nurse said she had never heard of much pain, outside of a little achiness, being associated with these treatments.  When I talked to the doctor, she also told me no pain, but she said she would ask another clinic where they do the dose dense treatments.  The other clinic confirmed that, yes indeed, dose dense treatments do produce more pain and that they give patients Vicodin to treat it.  However, they seemed quite confident that there would be minimal pain for me, and they promised to monitor my treatment to be sure I had no reactions.  I was reassured, but not convinced, but hopefully optimistic.

Well, they were right.  It is typical for the first day or two after a treatment to feel pretty good.  They give you pre-meds intended to prevent harsh reactions, (steroids, etc) and they usually give you energy for a day or two.  So Monday I got sushi with Sarah after my treatment.  I was a bit tired, but realized that my immunity would be soon compromised again and this was my opportunity to enjoy some sushi before I couldn't eat it for a while.  Tuesday, Wednesday and Thursday I felt pretty well but did have some shooting pains in my legs and some nausea.  Friday was a little worse.  Saturday less pain, a little nausea.  WOW!  That's it?  Now that I can do!

The days start out pretty good and then symptoms get worse into the afternoon.  The pain that I do have is kind of like when I have been cleaning all day and I finally fall into bed to sleep, but can't sleep because my body aches from all the work.  The soles of my feet hurt quite a bit and I have shooting pains that can be briefly intense as well. The good thing is that it is no where near as intense or frequent as before.  

It is my understanding that because I am receiving weekly treatments instead of bi-weekly, my immune system will not have time to recover  and that the effects of the Taxol will be cumulative as more treatments are piled on.  They say that by about the 4th or 5 treatment I could begin to feel significantly more symptoms, however, by that time I will be half way done.   My hair should begin to fall out again in about 2 weeks, right now I alternate between a fuzzy head and freshly shaven.  I love the way my fuzzy head feels and have to really concentrate on not rubbing it all the time, however I don't like the way it I shave it.

Tomorrow morning I will have treatment #2.  I am optimistic that it will be OK. I take one day at a time now never knowing how the next day will be, but grateful for every day that I have that I don't feel miserable.  Wouldn't it be nice if that kind of appreciation could last?