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 unpleasant...like 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 again...so 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.  Ugh..so 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 praise...as well as prayers.  He has been amazing!

It's been a while...

Yes, it has been a while since I last blogged.  Oh, this may not be the most uplifting blog I've ever written, I'm just kind of blogging to get it all out.  It may be long  and it may have a lot of complaining, and it may make outside readers a little uncomfortable...or not, we'll see...I'm not really sure what I'll end up writing. I think there is value for me in writing it, and perhaps value for someone else who may choose to read it all.

I completed my 4th treatment of AC (Adriamycin + Cytoxin) chemotherapy about 9 days ago.  I think today I am finally beginning to feel an uptick from that last treatment.  Be sure not confuse uptick with feeling good...just not as bad.  It has been bad.  I have found that subsequent treatments DO in fact get worse.  By my 3rd treatment I got sick almost immediately and found no real relief until 2 days before I had to go back in for #4.  I go to see my Oncologist on the weeks between treatments to see how things are going and to get a blood test.  The week after #3, I burst into tears the moment he asked me how I was doing.  He was very kind and compassionate as I sat there sobbing and telling him about my misery.  I was afraid I had offended him when I compared how I felt to a concentration camp (soon after I realized he is Jewish :o/ ).  But he was always kind and concerned.  He prescribed me more "things" to help make "things" better...but things didn't get better.

I think I have almost lost it mentally.  Truly the physical side alone of these treatments is Hell...but the mental aspect is also.  This affects your psyche in ways I never anticipated.  Being extremely sick and uncomfortable day after day after day after day...and then going back in for more just after you start to feel a little better.  It is like eating the same food that you got food poisoning from over and over again.  It is insane.  Smells and memories start to make me nauseous.  Small annoyances make me nauseous.  Even some of the ever growing PLETHORA (Do you know what a plethora is?) of pill bottles congregating on my headboard make me nauseous just by looking at the names.  It takes great mental effort to distract my brain so it doesn't make things worse. (hence the blogging)


Anyway, they have tried a number of things, prescription and non to make things better, but I seem to get little if any relief.  The DEX is one of the bottles that makes me sick to look at.  Zofran does nothing for me but give me a massive headache.  Compazine may help a little, but not enough.  Ativan...I only take it at night and it allows me to sleep well, but I don't feel like it is very effective.  I usually sleep well regardless.  They gave me a new patch thing that is very expensive called Sancuso that did not help...but it was annoying to have a big patch on my arm reminding me of the fact that IT WAS NOT WORKING! (Ripped that sucker off after a few days).  They finally prescribed Phenergan...I know it knocked me out the first night...maybe it worked.  I would like to mention that at least half of these medications they are prescribing to me are also used as anti-psychotics and have less than desirable side effects...including some that affect the nervous system and may or may not be permanent.  So the ones that actually may be working like the Ativan, Compazine and Phenergan...scare me a little and I only take them when I am truly, truly desperate.

Last Tuesday, one week after my 4th treatment, I went to see my Oncologist. Strangely when I went in, 2 nurses at different times asked me how I was and I told them not so good.  They both acted totally surprised with a high pitched "really?".  I don't know what their deal was...but it was pretty irritating that they seemed completely unaware that I might be feeling a bit under the weather.  Like...where do you work and how have you been completely oblivious to the fact that a chemo patient might not be feeling so great?  Khhh!  As I was sitting in the waiting area a woman came up to me out of the blue and said, I have to tell you that you have a beautiful bald head.  Sweet!!  That made me smile.  Then I saw a woman walk toward the chemo room who looked as sick as I felt, and I started crying for her, because I knew.

Anyway, I gave the doctor a few more seconds this time before bursting into tears again when he asked me how I was doing.  I apologized for my insensitive comment about the concentration camp, and he quickly validated my feelings of entrapment.  Then he suggested that perhaps it would be good if I took a week off before starting my next 4 rounds (of Taxol).  I had been thinking about asking him that, and I was grateful we were on the same page.  I can't tell you how excited I am for next week.  Maybe I'll get a few days where I just feel good again.  I hear the Taxol is not as bad, especially nausea wise, as the AC.  It has different side effects like neuropathy, aches and pains, and fatigue to contend with, but hopefully it will be more manageable.

As a non sequitur, I like being bald.  I have gotten good at shaving my head every few days for that super smooth feel.  (There are still a few small patches that are still slowly trying to grow.)  I like not having to deal with hair on my pillow or in my face or the heat of having hair insulating my head in times of hot flashes.  A hot flash on a bald head is not so bad because it evaporates and cools immediately...not like when the hair just makes you think your head will combust spontaneously.  I choose to go bald almost everywhere.  I am about 90% comfortable and increasing; in fact I rarely think about it unless it's cold.  I do bring a head covering with me in my purse and car "just in case".  Just in case I may feel uncomfortable (almost never), or it might be cold (like restaurants and movie theaters...often.)  Bald heads don't like the cold.  Sarah likes to put her cold hands on my head...and often it feels really good...sometimes it is shocking.  Ceiling fans and cold air are like a jet of cold penetrating the top of my head and can make my head ache.  Other than that...I like being bald.   I don't see myself very often, so have not grown used to seeing myself bald as others have.  When I look in a mirror, I think I look like someone photo-shopped my head and erased my hair.  I get some stares, especially from children.  I usually just smile and sometimes wink at them to let them know that it is OK.  It doesn't bother me.  It's not like I don't know that I look a bit different.  One thing I will say about being bald is people seem to be nicer to me because of it.  I get spontaneous hugs from strangers.  I get encouragement. I get smiles.  Occasionally, I get free things.  I like being bald.

And by the way...the mannequins in the mall tell me that my clothes may not be fashionable...but my bald head is...

...And that's all I have to say about that.

Things I didn't know about being bald...

Well, I did it...Last night I shaved my head.  To be more accurate, Ron and Jacob shaved my head.

Sarah took pictures of the process.

None of us have ever done such a thing, so we really didn't know how it was to be done.  Jacob started with the Flowbee.

If you don't know what a Flowbee is, it is a hair cutting system where there are clippers attached to a vacuum that cuts your hair while sucking it up and into the vacuum.  It works pretty well...and once we got it figured out it was successful in giving me an all over buzz cut...but not bald...I looked a bit concentration camp-ish.

Hmmm... we hadn't counted on that, so we had to borrow some clippers from a friend to finish the job.  (Thanks Jacque!) Once we shaved it down as low as it could go, Ron used his electric shaver to make it even smoother.

  and then I took a shower and then tried to shave it even more with a razor.

  So here's what I've learned...

1. That smooth, shiny head look and feel is more difficult to get than one might think.  I think my head looks like it has a 5 o'clock shadow all over.

2. My head has a "grain".  Hair on top grows forward, while hair on sides and back grows downward.  Trying to shave it smooth is not so easy as it is pretty coarse.  Even my 5 bladed razor had a tough time.  I got it fairly smooth...but some spots just wouldn't smooth out completely.

3. I thought it would be too creepy to pullout...but if I had it to do over again, I think I would just pull as much of it out as possible first, then shave the rest. (It was coming out pretty easily)

4. I can't speak for the men, but for the ladies... when it has been a while since you shaved your legs and you finally do...  You know that smooth feel? ...  My head feels the same way.   It's kind of fabulous.

5. My head is a pretty good shape for being bald.  Sarah, who just finished an anatomy class, thought it was cool you could see the sutures (the joints where skull bones have fused from birth).

6. When I send emoticons while texting, etc... There is now a resemblance.

7. A cool hand on my face feels cool, but on my head feels much colder... That is a pretty trippy feeling if you've never experienced it.

8. For that matter...shower water streaming on my totally bald head feels pretty cool as well.

9.  The wig is the most uncomfortable thing I can imagine wanting to put on my head.  Hats are not much better for me...maybe for short periods so as not to shock people.

10. Sleeping with a bald head is awesome.  It felt great on my pillow.  Hair around my face and neck while sleeping has always been a nuisance. Not to mention the breeze on my head coming through my open window last night... way cool!

I'm sure there's more I never knew...but that's my list for now.  I'm feeling a bit better today...and my sense of humor is back.  Good morning!

**SIGH**....It's time...

 

When your comb looks like this, it's time.  

Well, round two of my chemo treatment is well under way.   The last few days have been anything but pleasant.  I think it was a little better than last time though; probably because this time I was a bit more experienced and knew how to handle the discomfort that would arise.  I tweaked my medicines to my liking and managed the best I could.  For some reason the image that continues to flash through my head of how I feel is that of a cricket that has not been sprayed with enough Raid to be humane.  Sorry for the imagery if it is offensive...but that's how I feel.  However the cricket is overcoming the Raid today...and beginning to feel a little better....not great, but better.  

Chemo makes me very irritable. Not like I am raging or anything, just irritable.  Pictures of food irritate me. Things that are just a little off, irritate me.  Bumps in the road irritate me.  So I go about my day trying to avoid the irritations that are everywhere.  It is a bit stressful...but I think it will go away soon.  It is hard being homebound not feeling well enough to do anything.  I get so incredibly stir crazy. So it is a relief when I get out for even a little while, which I try to do every day.

I don't think my taste buds are as dead this time as last time, but things just taste wrong.   I am not so repulsed by the sweet this time, however I do prefer the salty..even though the salt tastes bitter.  Still loving spaghetti, but find tomato soup to be too sweet. Malt-O-Meal is a good filler.  It is a real struggle for me to deal with nausea, brought on by hunger, that I don't want to feed because I feel nauseous.  I remember feeling that way when I was pregnant and thinking that would be HELL for over-eaters...To always be hungry, but everything you look at to eat makes you feel sickish.  Ugh!  Speaking of over-eaters... I've gained 2 pounds.  (Khhh...as if!!!)  Forget the dream that maybe this might be worth it if only I could lose 20 lbs. WHATEVER!

 

To top it off...(chortle)  my hair is falling out like crazy and it is grossing me out.  Touching my head is kind of like petting a golden retriever...in the summer... while your hands are wet.  It is really creeping me out...grossing me out to be more exact. Seriously...gross!  

                                    

Maybe...

Last night Ron and I went out to grab a bite and then walk around the Mall for a bit.  We stopped at a store that had hats, and some were cute, but I have never been a hat girl.  Of course I've never been a bald girl either...but still. Trying on hats made me cry...so we left.  This really is a hard thing.  Oh, I've anticipated and joked about it for months...as I do, but it doesn't seem so funny right now.  The whole process feels so demoralizing. From the poking and prodding and the loss of privacy and modesty, to surgery and scars and chemo side effects...  It really sucks...to put it bluntly.  Losing my hair is just one more thing.   I have long gotten tired of looking a bit too boyish for my liking with my short hair...even to the point of avoiding looking at myself.  I can only imagine how annoying bald will be.  I guess I'll just have to get used to it. 

Boy... what a downer of a post. Sorry...I'm not feeling so great right now.  On a bright note... I did get some beautiful flowers delivered on Friday....from my Uncle Phillip and Cousin Don.  That brought a smile to my face...and they continue to do so.

                                   

 Thank you Uncle Phillip and Don!!