Thursday, December 31, 2015

Happy New Year!!

You can say that again!

I am so looking forward to a new start in 2016.  It has been a rough year, but it is finally over.  I had my port removed on December 23rd and everything is healing great. I don't know if it was the anesthesia lingering or what, but I even felt better that week than I have felt in months.  I seemed to get a reprieve from the neuropathy that plagues my hands and feet and my joints felt much better and I got a couple of really good nights sleep.  It was wonderful...even miraculous!

Unfortunately a lot of it is back now, but it made me hopeful that eventually it will go away and I will feel back to my old self in time.  In a couple of weeks I will begin taking the Tamoxifen that I am supposed to take for the next 5-10 years to help prevent the cancer from coming back.  I am not looking forward to it.  Some people tell me that the side effects are quite bothersome.  Muscle weakness, sore joints, etc...kind of like I feel now only for 5-10 years. Some people say it didn't bother them much at all.  I am hoping that maybe some diet changes and exercise will help make it more tolerable for me.

Just the same I have a new perspective on life than I did last year.  I feel kind of stunned when I look back on this past year, kind of like a slap in the face and whoa...what happened?  It seem almost like a bad dream now. I understand what it means to have a "new lease on life". I never really thought about it much, but we really do only have a LEASE on life.  One that may or may not give us notice before terminating. I think I appreciate life more, as I no longer take for granted that I have a lot of it left.  That doesn't mean I think I am dying, just that we just never really know.

I have spent just about the entire 2015 year dealing with breast cancer.  It has consumed my time, my thoughts and my energy.  Not to mention that of my family.  It over now ( hopefully forever).  Next year I have a clean slate. I feel like I will be at a loss as to what to fill my time with.  Not that I am ever bored or lacking for something to do, but I am different now.  I will be looking to fill the void with good things, meaningful things, things that make my life more meaningful and worthwhile.  I have some ideas, some of which I don't know how to get started and others I am trying to decide if I am really committed enough to maybe get a Master's Degree.

There will be a little bit of traveling. (Perhaps this time Sarah and I really will go to Alaska.)  I also have a lot to get caught up on with friends.  I have been somewhat of a hermit this past year.  I am looking forward to being a bit more social.  Our kids Matt and Jacob will be graduating from High School and preparing for missions and will probably leave early this summer.  We will be excited to see them getting ready and receiving their mission calls.  Sarah will graduate with her associates degree and is now trying to decide what's next for her.  I am sure there will be a few trips to Utah to spend time with family and friends.  2016 will be a busy year and I am anticipating a much happier year.  I am so excited to get started!!

Happy New Year Everybody!!!

Thursday, December 3, 2015

32 Down and 1 to go!!

Hello again...  It has been a while and I thought an update was in order.  It has been over two months since I finished my chemotherapy treatments.  What a relief to be done. Although I was expecting to have about a week of feeling poorly, followed by a gradual upswing.  What I got was a week of feeling poorly, followed by a surprising new side effect.  Into the 2nd week following my final treatment, I began to feel all kinds of fatigue, muscle pain and joint pain.  I was surprised at this.  In my follow up appointment 2 weeks later, my oncologist informed me that this fatigue would last at least a year.  Seriously??  She told me that I probably have been feeling it through out my chemo treatments, but because I was just muscling through it, I didn't notice.  Kind of like working on the yard for hours and only when you finish for the day and lie down do you feel the aching.  Really...I don't believe this explanation, it didn't hurt like this before.  I'm hoping she is wrong about it taking a year to feel better... ain't nobody got time for that!

What I do know is that it persists today.  I feel like I am about 20 years older than I was at the beginning of the year.  My feet hurt...they ache like I have been walking for miles.  They especially hurt when I get up in the morning, or when I have been sitting for a long time.  My joints hurt in my back, knees, hips, shoulders and fingers.  When I sleep at night I can sleep for a few exhausted hours before everything starts to hurt and there is no longer a side that doesn't hurt.  On my back my right leg gets numb, on my left side, my left shoulder hurts excruciatingly and my arms and hands fall asleep, the same on my right side, but not as bad, on my stomach both arms fall asleep.  Some days are better than others, and if I am moving around the joints loosen up some.   It is frustrating to say the least.  I am trying to get some exercise to gain some stamina.  I have tried the Couch to 5k thing again...but I think my condition is worse than that of a couch potato right now.

I also didn't realize how chemo affected me mentally until after it was over.  It really does a number on you that way.  However, I am feeling more normal now...and I don't think I feel the "chemobrain" forgetfulness, fuzziness I've heard about.  My taste buds are back to normal, which is a nice bonus as well, and just in time for the holidays!. Things are getting better!

So my radiation treatments started on October 19th and I have only one more treatment...tomorrow...and then I am done.  When I was doing chemo, the time went by so watching a clock tick off the time for 5 months.  I would get up every day and think, I have 12 hours before I can go back to bed again...and then endure the extremely slow passage of time.  However once I started my radiation treatments, time sped back up. Partly because I was not so miserable anymore and partly because I have been super busy, but the 7 weeks have passed quickly.  For me radiation has been a piece of cake.  With radiation all you do is show up and lay still on a bed for about 10 minutes while a big machine moves all around making noises.  Then you get up and go home and come back the next day for more of the same...for about 7 weeks.  The most annoying aspect has been the interruption of my day, every day to go to appointments in Gilbert.  It is a 30 minute drive each way and so it takes up about 1 1/2 hours of each day.  One thing I have enjoyed is the timing of my radiation treatments. Gilbert is cool in that the road I drive down to go to my appointments is lined with deciduous trees.  I began my treatments in October when the trees were all green, but as the weeks have passed, every day (except weekends) I have watched as the trees have begun to fade.  First there were just little hints of yellow, then some orange and red.  Every day I notice the difference, something I have never done before. I believe they are just moving past peak right now.  It has been a fun experience!

For the first few weeks of treatment, there were little, if any side effects.  Toward the end I look kind of like someone poured a pot of boiling water on over my right side.  It a bit tender and sometimes painful.  Under my right breast  is some blistering and peeling...right in the know the one where the bra would just love to dig in.  So, I'm flying hippie style most of the time now...if you know what I mean.  It is a little itchy as well, but they give me stuff for any discomfort.  It is almost over and I haven't noticed much fatigue.  My radiation doctor told me that I actually was feeling fatigue, but that I was recovering so fast from the chemo, that I don't notice the fatigue that the radiation is causing.  Since he told me that, I've actually been really tired...power of suggestion...go figure!

So tomorrow is my last day of treatment and I am excited to be done.  If what the doctor says is true about fatigue caused by radiation, I can hardly wait to see how I feel when it is all over.  On December 23rd I am scheduled for surgery to have my port taken out and I will consider myself done!  It has been nice to begin getting back into my old routines.  I have been back to work selling things on eBay...cause Christmas is coming you know and this has been an expensive year for us.  Ron and I are exercising in the mornings and we are both feeling better because of that. Next week Ron's son Jon is coming home from his mission in Ukraine and we will be going up to Utah to spend nearly a week.  I am so thrilled to be on to bigger and better things!!  So, all in all things are looking up.  And I think they are going to continue to do so!!   

Here is the most recent picture of me with my hair.  It think the gray makes me look about as old as I feel right now, but I am leaving it natural to see what it does before deciding if or when to color it again.  I do get a lot of compliments on it and I do think the silver is kind of cool, but I have heard the color will change and go back to dark again.  So I am just going to wait and see what it does... because I'll never get the chance again.  ... Remember my natural color back in April... 
WOW!! What a difference!

Sunday, September 20, 2015

The End Is Near...

Today, Tuesday, September 22 is the day!  (Ignore the above date...that was an ill-fated attempt to blog on Sunday)  Today is the last day of my Chemotherapy treatments.  I am excited to say that these last treatments with Taxol have been quite bearable.  In doing my research, I read that doing 12 lower doses of Taxol as opposed to 4 high dose treatments is just as effective...and has significantly fewer side effects.  Well, having had one high does that nearly killed me and so far 8 lower doses, I would definitely have to suggest to anyone who is about to start with Taxol...go with the lower doses.  While it has been no picnic, it has been bearable. I have numb tingly feet, but I have taken many vitamins and supplements to help keep that to a minimum.  I have had some nerve pain and headaches.  I wake up nauseous and when I get worn out I get nauseous again.  Heartburn, constipation, sleepless nights, exhaustion, body aches, fatigue, depressed mood, weird sores on my hands, mouth sores and many other side effects have plagued me...but they were so much better than the first 2-3 months that I am grateful that was all.  

I think one of the most annoying side effects is the loss of my taste.  Believe it or not, I can put a glob of salt on my tongue and barely, if at all, detect it.  I can taste sweet...which you might think, considering my sugar addiction, that would be great, however the yummy sweet things usually have some salty, savory element to them that make them especially yummy...think cookies you forget to put salt in.  Even a sugar junkie wants to taste something else other than sweet.  It has also been so annoying when I go to a restaurant, forgetting that my taste buds are dead, and anticipating a delicious meal, only to realize while waiting that I won't be able to taste it.  That happened on a number of occasions...and it really was depressing.  I never realized how important our sense of taste is to our happiness.  I even served some juice to my family that, although I had just guzzled a glass of it, they assured me it was fermented. (I sure slept well that night.)  Eating good food is fun...when you can't taste it,'s not.  (No...not being able to taste hasn't caused me to lose weight either.)  I'll be glad to get my taste back..and just in time for the holidays!

After today's treatment, I will probably feel kind of yucky for about a week, then I will be on my way back to health.  I am excited to begin to be more active...maybe take up the couch to 5K challenge again.   Next month, Ron and I are going to take a vacation.  This has been a long year and I think we need it.  We are thinking Washington DC...  I bet it will be beautiful in the Fall.  Then, after about a month off, I will begin radiation treatments.  These will be every day Monday thru Friday for about 6-8 weeks.  I think I will be done before Christmas! I don't expect the radiation to be too bad.  I hear they make you a little tired and the burn spot gets irritated and can crack, but there are creams for that.  I am just looking forward to feeling back to my old self.  

So in about 2 hours I will receive my last chemo treatment.  I reflect back on how I felt on my first chemo day, the dread, the fear, the unknown...I never imagined the last day.  If I could go back and talk to my fearful self on April 7th of this year...  I wouldn't tell have much to fear. I wouldn't tell her that you will be more miserable than you ever have been in your life.  I wouldn't tell her it's worse than you have imagined... although true, that would terrify her, and she's already pretty scared.  She has a good reason to be really was least the first 3 months..  I think instead I would tell her, it will be hard...but you are strong, and when you feel like you can do this no longer, God will strengthen you beyond your natural ability to cope.  I would tell her you have many people praying for you and supporting you, and YOU CAN DO THIS.   I would tell her that it will get better.  I would tell her that this will give you insight and experience that you never wanted, but along with that you will also gain compassion and understanding that can only come with experience. I would tell her how nice people will be; how people will turn their kinder sides toward her; how even strangers will hug her and pray for her and give her encouragement through it all.  I would tell her of growth...the kind of growth that only comes through the enduring of hard things.  I would tell her that it will feel like a very long time, but it will end.   And then I would just hold her and we would cry together...

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?


Friday, July 17, 2015

On the Good Side of Opposition...

So the last time I blogged, I was still pretty sick in the hospital with PCP.  I have not had a chemo treatment since June 9 and it has been wonderful.  I have been home for nearly 3 weeks now and I am thrilled to report that I feel AMAZING!

I left the hospital with instructions to continue taking this yellow-paint like substance for two weeks.  MEPRON it is called.  It was nasty tasting stuff that made me slightly nauseous, but no biggie. (I have felt worse.)  My symptoms were gone and my health improved quickly and once I stopped taking the antibiotics, I felt as good as new again.

That's where the opposition comes in...  Have you ever felt so you had the flu or something really miserable, and then felt good again? If so, then maybe you can relate some to how good I feel.  It is a different kind of good.  Like the kind of good where you now know (or recognize) and actually appreciate the difference.  Feeling normal again after feeling horrible for 3 months, feels incredible!  I just love that I can take a deep, unhindered breath, go for a walk without getting exhausted, taste food and eat the things I like again.  I am amazed by the strength and resiliency of my body and am thrilled to know that when this is all said and done, my body will repair itself and I will again feel good.

It has been such a blessing to get back to "normal" again.  Knowing that I would not have a treatment this month, I took all of the medicines (and that is a lot) that were lining my headboard and I threw them in a drawer so I wouldn't have to look at them for a month.  I have been taking a number of vitamins and supplements to give my body a boost back to health.  I was hoping that I would eat healthier and try to get  in shape a little bit, but alas old habits die hard and I decided to just take it easy and worry about lifestyle changes when this is all over.

Most of all, while I have felt better,  I have been enjoying spending time with my family.    I think they are happy to see me feeling good and smiling more.  We haven't done much, but it just feels more like it used to, and I have missed that.  Today Ron and I are going up to Oak Creek to  for a night.  Sarah will join us in the morning and we will pick blackberries and make blackberry is our yearly tradition.  Also next week we will all go up to Utah to get out of the heat for a few days and spend time with family and friends.  That will be fun.  And then...I have to get started with my treatments again. 

My chemo treatments will begin again on July 27.  The course will be instead of 3 more treatments every other week,  9 more treatments of the same stuff every week.  If I hadn't gotten sick, I would have had my last chemo treatment on Tuesday of next week.  I am a bit disappointed that I have 2 more months ahead of me, but it is my understanding that this course of treatment is easier to manage with fewer and less intense side effect...while being just as effective.  What makes it most doable for me is the knowledge that when it is done, I will feel good again...and that it doesn't take long to start feeling good when the treatments stop.

My hair is already growing back in.  I wasn't planning on that. I love the way it feels growing in least the first couple days.  I think my head feels like a soft and fuzzy.  In fact, I like it so much, I find myself lightly rubbing my head almost constantly.  I feel like a little baby with a fuzzy blanket or stuffed toy.  No wonder they like them so much.  Unfortunately, I think it will probably fall out again once chemo treatments start instead of letting it grow now, I just shave it off every two or three days.  By day 3 or so, it drives me crazy to look at because it becomes more visible and I don't like it.  I prefer bald to having super short buzzed hair.  Eventually I will have to endure the transition...however not now and only once...when I am done with chemo.

So here is a list of things I have determined are notable benefits of having chemotherapy:

  1. No hair is awesome.  I can wake up, shower and be ready to walk out the door in 10 minutes, 15 if I eat breakfast. I love that!
  2. My skin has never been clearer since I was like 11.  Chemo is amazing at clearing a complexion. In fact there is scarcely any extra oil on my skin at all.  It doesn't feel uncomfortably dry, just not producing oils.  And I have hardly seen a pimple in months.
  3. My mouth is different also...It's not so gross in the morning when I wake up.  
  4. No periods is good.
  5. No need to shave is also nice.
Ok...that's all I can think of.  They are nice, but surely not worth it.  The #1 benefit...Of course is that it kills cancer and helps keep me alive.  I am grateful for that.

I am also grateful for all the kindness that has been shown to me and my family.  From encouraging words, and cards and gifts that have been sent, to the amazing ward members who have served our family with dozens of meals and house cleaning for all these months...  I have a deep gratitude for those who have made this trial more bearable so far.  Thank you for your kindness and generosity.  It has been so very appreciated.

Friday, June 26, 2015


What a long week it has been.  Yes, I am still in the hospital. After getting their best people on it...(kind of like an episode of House) they have determined what I have.  It is called Pneumocystosis or PCP. It is a kind of fungus caused pneumonia that attacks immune suppressed people.When my new oncologist heard what it was, she grimmaced in a concerning way.  If your doctor is grimmacing at your diagnosis after all these years of practice, you know it must be bad.   It is most commonly found among those who have AIDS..but occasionally people undergoing chemo.  It is very serious...left untreated 100% of people die.  However, with treatment, which will take a while, it can be cured.  

So I will be staying here a bit longer.  I am getting quite stir crazy.  On top of that the menu never changes.  It is kind of like eating breakfast, lunch and dinner at Denny's every single day....only not nearly as good.  That along with the fact that the meds they are giving me to fight this infection make me nauseous...I am back to that nauseous but super hungry but nothing looks or tastes good thing.  I swear I am so sick of food and my need to eat it.  Ugh...I hate food.

I have very little energy.  When I am in bed I feel kind of fine, but walking down the hall, I realize I am not fine.  Sometimes I cannot hold a conversation without pausing for breath between words.  (Kind of like Stevie in Malcolm in the Middle).  Last night I was eating a banana and my jaws got exhausted trying to chew it...I had to stop to let the burn go away then I could chew again.  Now that's fatigue!!!

The nurse staff here are mostly very nice.  Some are more fun than others, some are more down to business, but that's OK.  I have to be on IV antibiotic/fungal for 7 full days and then I can go home and take it in pill form.  So that is what is keeping me here.  I may be able to go home on Monday.  I hope so. 

Sunday, June 21, 2015

I Told You I Was Sick...

Have you ever tried to tell people something was wrong, but they wouldn't listen?  After a few times, you might begin to second guess yourself.  You might begin to wonder if you are just being a baby or paranoid.  You might begin to wonder if you really are as hysterical as they are treating you.   With that comes a fear...what if THEY are right?  Then you look like a hypochondriac, or a spaz, or overly dramatic.  People might think you are crying wolf and will never take you seriously again.

This has been a traumatic week for me to say the least.  I felt horrible all week, plagued with fevers, body nerve pain, a cough, headaches....  After going to the ER on Monday and having them tell me they could find nothing, then going into my oncologist on Tuesday and having him show no concern  I was beginning to question myself.

After the episode with my Oncologist I was distraught.  Not only was I horribly sick, but I just lost my doctor and had nowhere to go.  I cried that whole crying from the depths of my soul.  I was even surprised at my reaction.  On Wednesday I was still crying but angry.  I called my Oncologist's office to talk to him before he left on vacation for 2 weeks. just don't do that to a patient, and I felt that he and I needed to kind of patch things up so I am not just left hanging until he got back.  Being as emotional as I was, I asked his nurse to print off my last 3 blog posts and show them to him so he could know where I was coming from....then  have him call me.

Well, he called back at the end of the day, and he did apologize, but it kind of felt like his mother was making him do it. He even insisted that nobody had done anything wrong. He seemed very preoccupied with the idea that I actually had a blog documenting my experience and mentioned a couple of times that the information I was sharing was very personal.  He told me he had been angry, but that we would continue treatments and discuss how to proceed when he got back in 2 weeks.  While I appreciated the apology, I wasn't sold on him anymore.  Some people are grumpy people who you come to know need to be handled gently or a healthy distance kept....but some people are what I call Pit Bulls.  People who seem very nice, but then turn and "maul" you in one surprising incident.   The unpredictable, yet potentially volatile nature of a Pit Bull is something I avoid. My former oncologist, I have determined, is a Pit Bull.

As the week progressed I did find another oncologist, but couldn't get an appointment until the following Tuesday...that was on Wednesday.  Now I found myself feeling horribly and frighteningly sick and I didn't have a doctor I could trust, and I still didn't know how to deal with all that was happening.  I was still spiking a fever of around 101, I had headaches, I was nauseous, and I had this hacking cough, my body hurt,  but nobody seemed to think any of that was a problem.  So I just endured and kept throwing medicine at it hoping something would work.  The fever was worrying me the most, but my oncologist had barked out that it was just a drug induced fever in our LAST conversation.  I wasn't convinced...I was worried...I began to doubt myself.

I woke up each morning at about 4am feeling horrible and crying.  Finally on Friday I had had enough.  Either I was going to be checking into a Hospital, or into a Psych ward that day.  I told Ron when he woke up and he was on it, but how?  How does one go about getting checked into a hospital when you have no doctor?  We went to the ER already...they sent me home with a shoulder shrug.  So I began making phone calls to find someone to give me some advice, or who could write the orders.  Eventually I got a hold of my original surgeon and she worked it out for me to meet with my new oncologist that afternoon, in hopes that a hospital visit might be avoided.

I like this new oncologist...she seems to listen to me.  She was concerned about my fever and a little about the cough.  We talked for a while about new treatment ideas, then she said she wanted to do some blood tests, etc.  Then I broke down and told her I just want to be admitted to the hospital.  I can't do this anymore and I just need a couple days of someone else chasing my misery...someone who knows what they're doing.  She said .. OK lets get you checked in.  Just like that we went to the hospital and I had a new temporary residence.

Now when I mentioned I wanted to go to the hospital, I just wanted a couple of days.  In a moment of reprieve from my misery the next day, I mentioned the idea of going home.  They didn't laugh in my face, but told me I am way too sick for that.  So here I am on Sunday night with no end in sight.  They have done a gozillion blood draws, urine tests.  I've had an echocardiogram and x-rays and CAT scans of my lungs.  I have spoken to many doctors...pulmonologists, oncologists, infectious disease specialist.  Two days later we still don't know what the problem is.  Pneumonia, Valley Fever, Staph, possible bad chemo reaction (I'll say) etc. have been suggested, but no conclusion. They have even taken note of my mosquito bites and pet chickens.  My CAT scans show that both lungs are cloudy all over, but mostly in the upper portion. They have me hooked up with their best antibiotics and anti-fungals and all the meds I want...if I want.  I believe I am in good hands and we will get this one figured out.

So tomorrow I will go in for what is called a bronchoalveolar lavage.  It is this procedure that makes me think of some of the techniques they use in Guantanimo, where they put tubes down my throat into my lungs and squirt fluid in, then they collect the fluid and run tests on it to see what is in there.  I am a bit frightened.  I will be under a light anesthesia...twilight they call it, and although it will be distressing, I am told I won't remember it.  Hmmm....Ever choke on a little bit of water???  So if you are dealing with a traumatic procedure that makes you resist and cough while they are trying to do it, and you don't remember it when it is over...were you still traumatized???  I don't know, but I am a bit nervous...scratch that...scared. At this point...I'm ready to tell them anything they want to know.

So that's the scoop.  I told you I was sick.  I don't get much pleasure from saying it, but I am glad I did what I felt needed to be done.  Oh...things would have progressed badly this weekend even if I hadn't insisted on being checked.  I am pretty sure I eventually would have been admitted through the Emergency Room at some point. 

So...  I know that friends and family will probably read this and be concerned, and may even try to contact me.  Right now, I need rest...something I am having a hard time getting...did I mention insomnia???  OH...forgot that...I also have a bit of insomnia...not great for a body needing some rest to heal.  I need to sleep whenever I can. I am sure you understand.  I appreciate all the prayers and good vibes being sent my way.  I will try to update as I learn anything. 

Wednesday, June 17, 2015

My Doctor Said..."You are done with chemo"...

That's what he said yesterday... "You are done with chemo."  I said, "What do you mean?"  He said something to the effect of... you won't be finishing your chemotherapy, you can't handle it mentally.  That's what I heard anyway.

Oh, yesterday when I went into my appointment, I was angry...I was sooo terribly angry.   The night before, Monday night, I had spent the evening in the emergency room.  Monday evening I began to have a fever, and one thing I know about chemo is that fevers are bad.  I really think I had a fever on and off all weekend.  I took my temperature on Friday and it was about 99.5.  I had been taking all kinds of anti-inflamatories which often lower fevers, so 99.5 left me a bit alerted...since my temp normally hangs around about 97.    When I called the on-call doctor on Saturday, he didn't seem too concerned about my measly fever.   So I let it go...I don't want them thinking I'm some hypochondriac you know.  As far as my pain was concerned, he told me the only thing I could do was go to the Emergency room for assessment, otherwise keep taking the 4 year old your doctor on Monday if you feel the need... have a nice day!

So I endured the weekend as the pain seemed to be decreasing a bit in a come and go fashion.  On Monday morning I put in a call to the triage nurse at my doctors office, thinking surely she would give me better instructions on how to deal with my misery...and give me the one thing I knew was working...perhaps something like a NEW bottle of Vicodin...  When she called me back a few hours later on Monday, she listened to me and basically told me those are the typical side effects of Taxol and then she didn't give me any Vicodin, but instead prescribed me some anti-inflammatory.  I knew the moment she prescribed it, it would not work.

I understand now that a new law went into effect at the beginning of the year where doctors cannot call in narcotics to pharmacies...I guess there has to be a paper script.  However, on Monday, when the nurse failed to prescribe me a suitable pain killer, and then told me that is just the side effects of Taxol, I was truly terrified...more than I was when I was just winging that pain over the weekend.  I thought she was telling me that I was just going to have to deal with it, and I couldn't imagine 3 more treatments where I would have to endure such torture without medications...especially considering I was telling them what worked.

Monday night came and I took her prescribed NSAID.  I thought, "well, I might as well give it a chance...maybe it will work without the narcotics."  So I took it and waited.  I don't know if it helped, but I know my temperature kept rising that night.  Soon it was at 100, then 100.4 (the magic call-the-doctor-number), then 101.  I didn't really know what to do.  I had already called in twice and was feeling a bit like a baby about all this.  (Maybe I'm just pathetically wimpy?)  But finally my anxiety got the best of me and at about 7:00 pm I called the on-call doctor.  He hadn't called back by 8:00 so I called again and he finally called.  I think it was the same guy from Saturday, but I am not sure.  Once again he told me the only solution was to go to the emergency room.

You know...I'm not really one of those emergency room drama people.  I don't really want to spend a long evening in the emergency room...EVER!!  So the question is...since I was thinking nobody was going to do much for me...  suffer at home for the next 4 or so hours...or suffer in a emergency waiting room for 4 or so hours, only to be assessed and sent home.  I decided suffering is suffering, and they may be able to help me in the emergency Ron and I went.

This was a good night for such a thing.  I was seen right away...something that never happens in an ER.  They put a mask on my face to keep all the hospital germs off me and wheeled me back.  After asking me a bunch of questions they got started on urine tests, blood tests and hooked me up to some drips.  They told me they were going to give me some morphine and I said, "No,  I don't want morphine..." but the nurse kindly explained why I did  want morphine and I said..."OK".    By the time I was ready to go home, they offered me one more dose of morphine and I didn't even hesitate...LOL!  Really, I didn't love the feeling of the morphine its kind of a bad/good feeling to me, but it did take away any pain and anxiety I was feeling.  In fact, it was the most pain free and normal I had felt in months.  All of their tests came back with no detectable reason for my fever, so...  they sent me home at about midnight.  My fever was down and I slept fairly well that night.

When I went into my doctor's office on Tuesday, I was just so angry.  As I drove there I realized my anger could work against me and that the "ripping into" I wanted to give him, should be rethought.  I prayed for the ability to control my anger and to communicate in a way that would be beneficial without offending, and took a number of deep breaths.

Before I see the doctor, there is a nurse who takes me back and weighs me and takes my vitals. She is that same nurse who seemed surprised when I told her I was terribly sick from the last treatments.  As I went back with her and she began to make small talk, I just tried to keep my frustration in check.  Unfortunately, she kept asking me how my weekend was and how I felt.  At first I told her I felt really bad, and that I was so very angry about it that I didn't want to talk about it, as I began to cry.  She didn't just leave it there and I opened up, crying and ranting (as quietly as one can do that while crying) about the weekend.  She informed the doctor and he came in ready to hear it.

He said, "Start from the beginning."  So I did and explained it all to him.  Now in the past my Oncologist has been extremely patient and kind and compassionate with me.  However, when he told me that I called on the weekend and there was nothing that could be done, I ripped back at him, "I SHOULD HAVE HAD SOMETHING BEFORE THIS EVER GOT STARTED."  At that moment the expression on his face turned defensive and he told me, you are in the 99th percentile for reactions like this and then he said, "Your chemo is done."  Shocked, I said, "What do you mean?"  And he told me I can't handle it and I'm done.

Now you might have thought I would have stood up and shook his hand, clicked my heels together and left the room like George Banks after he lost his job at the bank...but I didn't.  I sat there shocked.  Thinking I had offended him and he's bagging my treatment.  I found myself apologizing and practically begging him to continue my treatment, explaining that given the proper medications and instructions, I could handle it.  We discussed this for a while to no avail.  He told me he was going to be out of the office the next week and that we could discuss things in 2 weeks when he got back.  As I left he handed me a prescription for Vicodin.  I left his office distraught.  I sat in my car crying uncontrollably.  I went home and did more of the same.........

Monday, June 15, 2015

Warning!... Serious Rant Coming...

Ok...  So yesterday I posted about the misery I was feeling from my Taxol chemo treatment on Tuesday.  The pain was horrific to say the least...unlike anything I have ever experienced in my life.  I have had wisdom teeth extracted with subsequent dry sockets, ingrown toenails, given birth naturally, smashed big toes with very heavy objects, been stung by a stingray...these are among my list of the most miserable pain I have ever experienced, but nothing compares to the pain I experienced a couple of days after my first Taxol treatment.

4 years ago, Sarah had 4 wisdom teeth extracted.  They gave her going home instructions and a prescription for 20 Vicodin for pain.  I was appalled at how easily they give out these narcotics to kids for such a thing. 20 Vicodin...really?  She never really needed any.  She took 1/2 of one just to see what it was like, otherwise Advil was fine.

I had 2 surgeries in March, and they gave me a prescription for Norco...which is like Vicodin.  40 pills, I never filled I never needed it.  Advil, once again was sufficient.

Ron had his teeth worked on a few weeks ago and they gave him a prescription for Percocet.  He took a couple over the course of a few days and that was all. they say that once we are done with a prescription, we should throw away the remaining.  In fact it is against the law to use someone else's prescription drugs.  But I didn't throw them away.  I still had Sarah's Vicodin from 4 years ago sitting in my freezer.  There have been when I smashed my big toe with a lodgepole bed...that I have taken one.  That's why I kept them, all the while knowing that I am not supposed to take them...because they weren't prescribed to me.

I know there is a big drug addiction problem with these medications...however not in my home.  What makes me crazy is:

1.  My doctor never warned me that Taxol would produce such immense pain.  I was expecting some bone and joint aches and pains, etc...  But there is no preparing for this kind of pain.

2. They didn't so much as say take a little ibuprofen or Tylenol for the pain. Much less send me home with a prescription for something that would actually work.

3. When the pain finally did reach a level beyond my ability to cope, I had to choose a 4 year old bottle of Vicodin in hopes of relief.

4. When I called in to the doctor on-call the next day, he offered me nothing, except to go to the emergency room, because he's not about to prescribe me a narcotic medication.

5.  Today I called my doctor's office to talk to the triage nurse.  She told me this was just typical of the treatment, almost like she expected me to just suck it up and endure.  She did call in prescription for Diclofenac another NSAID...for mild to moderate pain.  Really???!!!

Tomorrow I have a followup appointment with my doctor, and I feel like ripping into him.  They hand out Vicodin like candy to teenagers getting wisdom teeth pulled, yet for something that they know is excruciating, they hesitate to prescribe something that will work.  I feel like they think I am some kind of junkie begging for my next hit.
This makes me so angry.  So forget the advice they give you to throw out those old medicines, forget expiration dates, forget the laws that say you should not take other people's prescription medications.   I can't imagine if I had left such misery in the hands of the medical community.  I thank God I had sense to keep it on hand....and by the way...4 year old Vicodin still works!!

Sunday, June 14, 2015

Treatment #5...A whole new ballgame!

So, the doctor ordered a week off from my chemotherapy treatments.  It was wonderful.  I felt like garbage most of the time, (It takes a while for those "medicines" to clear one's system) however it was decreasing in intensity.  It was nice to gradually feel more normal as the week progressed.  A very generous friend offered me and Ron the use of her brand new cabin in Pine for the weekend, and we took her up on it.  If I felt very well right now I would tell you all about that weekend and her beautiful cabin, but suffice it to say it was a much needed and appreciated weekend.  As much as I never actually felt very well for very long, I just kept thinking how grateful I was that another dose of that AC treatment had not been added on.  I cannot tell you how happy I am to have that part of my life over for good.  That stuff is a beast!

So come last Tuesday, I felt almost back to normal and was feeling ...I think a bit over confident...that the next round of 4 treatments of Taxol would much easier.  I was excited to have no more nausea....or at least significantly less of it.  I've read many experiences and was under the impression that Taxol would be a piece of cake compared to the A/C.

So on Tuesday, I went in with a good attitude and they hooked me up to a new cancer fighting drug.  The whole process took about 6 hours including the Dr. visit, blood tests and infusion.  They put a whole lot of drugs in you before they actually give you the Taxol.  The pre-drugs made me sleepy so I slept most of the time, while my mom watched a couple of movies. One thing I noticed is that I had cramps in my abdomen and I was sweating profusely while receiving the infusion.  They watch pretty closely for allergic reactions to this stuff, but didn't seem concerned about the sweating, so I just slept and sweat away.  When I was done, I felt a bit groggy, but OK.

The next day, I felt pretty good.  In fact I felt really good.  The Dex, a steroid, that they  give you before the infusion is credited for that.  It really gives you energy and makes you feel good.  So I was optimistic that this was going to be pretty easy.  Until Thursday... About halfway through Thursday, Taxol began to show it's true colors, and all I can think is SERIOUSLY????!!! Why didn't the doctor warn me of this??  Why didn't he give me prescriptions for super narcotics for this?  At least tell me to take Ibuprofen for a few days or something.

Truly the pain is something nothing I have ever experienced.  Well maybe, but not for so long.  Kind of like being in labor for days, while a little elf kicks you in the crotch to randomly inflict shooting pains as well.  That was on Friday the shooting pains were everywhere and excruciating...even my teeth on occasion would get a shot of pain.  I didn't quite know what to do.  I am not a big medicine taker.  I started with Naproxen at times and Ibuprofen at others...all the while looking at the bottle of Vicodin that Sarah got a couple of years ago when she had her wisdom teeth removed.  I've kept it around...just in case, and on very rare occasions of extreme pain, I've taken one.

It took the whole day  and into the late night of extreme pain on Friday to convince me to take one of those little pills, and within 15 minutes I was asleep.  A little bit later I woke up writhing in pain again and I took another one and fell back into a relieving comatose type sleep.  I woke up a few hours later and took another one.  Saturday I called the on-call doctor to ask what I should do for the extreme pain they never warned me about.  He told me the pain I was experiencing was unusual...yet when I read online I see that it is not.  He also told me outside of going to the emergency room, there was not much he could do for me as he can't call in narcotic prescriptions.  So he told me to keep taking the ones I had and call my doctor if it didn't get better by Monday, but to go to the emergency room if it got any worse (heaven forbid!).

I have read that the pain usually subsides within 4 or so days.  Today it is 5 days since my treatment and I am feeling some relief.  I still have pain shooting from my tail bone up or down...or wherever...but not as often or as intense, but still pretty painful.  My feet feel like I have been walking on concrete for 5 days without rest.  They feel swollen and I try to stay off of them as much as possible.  

Fortunately, the nausea from the first 4 AC treatments has gone away.  What a relief.  The Vicodin makes me nauseous, but it is different...much more serious, like I will really throw up, but don't, however it is a relief to not be so hungry.  I can eat normally when I feel like it, but if I don't eat for a while, it doesn't become painful and desperate.  So far, I think I will take the pain over the way the AC made me feel.  Perhaps after a couple more treatments of Taxol, I might rethink that.

I am receiving 4 bi-weekly treatments of Taxol for 8 weeks and should be done by mid-July.  I have read that I could opt to have less intense treatments weekly that have fewer side effects, however they would be for 12 weeks.  I am debating...finish and be done with it in 8 miserable weeks, or stretch it out, be less miserable while adding 4 extra weeks on.  I don't know...I am so done with this.  

Thursday, May 28, 2015

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.

Monday, April 27, 2015

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!

Sunday, April 26, 2015

**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.  ( 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 the summer... while your hands are wet.  It is really creeping me out...grossing me out to be more exact. Seriously...gross!  

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 we left.  This really is a hard thing.  Oh, I've anticipated and joked about it for 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 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!!