It Has Been a While... Anniversaries... How am I Doing?

It has been 4 months since I last blogged.  I've been meaning to because there is so much I want to "talk" about.  So if you find this blog to be a bit ramble-y...I apologize in advance.  I have found that blogging my thoughts and experiences is so useful to me personally.

 Sometimes I just stop and re-live last year in my mind and I am amazed.  Amazed at what I went through, amazed at my thoughts, amazed at how much better I feel.  It really does seem like a dream. For the ladies...  It is somewhat like giving birth...we know it was painful and miserable, but the memory fades. That is how I feel, so when I re-read my blog, I am amazed.

Last night Ron commented on how yummy some strawberry freezer jam was, and I remembered that I made it on that day last year.  Last year on this day I received my first dose of chemotherapy.  I have come a long way since then.

I am often asked how I am doing.  I tell people that I am getting better all the time.  I am surprised at how long it takes to recover from chemo and radiation.  I found the radiation to be a piece of cake compared to the chemo.  The burning and blistering healed quickly.  I think I can see a faint shadow of where the radiation was, and on my back (the exit point) in a place just out of my reach I have an itch.  It can be maddening, but fortunately Ron knows where it is now and can offer relief quite adeptly when this itch strikes.

I am so relieved to say that the neuropathy that was so miserable for months following the chemo has mostly resolved.    Oddly enough...  When I got married in 1992 I wore tight pumps that squished my very wide feet.  Since that day I had always had numbness and tingling in the last two toes of my right foot.  That seems to be gone...after over 24 years.  However there seems to be a similar spot on the sole of my left foot beneath my middle toe that was never there before.  Go figure.

The arthritis in my fingers is resolving itself.  I have not worn my wedding ring for quite some time due to my fingers swelling.  I think soon I will be able to wear it again.  The pain in my shoulders seems to be getting better.  My right shoulder is pretty much back to normal, but my left feels like the rotator cuff is torn. Also there is still stiffness in my back when I haven't been moving for a while and my feet still hurt a bit when I get up at night.  Until things warm up, I am quite a sight getting up and moving.  I used to tell people that I felt like I aged 20 years from all the treatments...I truly did.  Now I would say maybe 5-10 years.  Things are getting better.

I gave up two things for Lent this year.  Sugar and Facebook and I made it a goal to lose 15 lbs during the period of Lent (Feb. 10 - March 27)  I did very well with the Facebook and have pretty much kicked the habit.  I check it now and then...but not like before.  The sugar was about 80% successful.  Most days I did very well.  My birthday was Feb 24...so I took some time off for that...boy was it hard to go back to no sugar afterward though.  I would say I consumed about 80% less sugar than I usually do.  That is really a huge amount considering that I am a sugar junkie.  I did manage to lose 14 lbs as well.  However since Lent is over...and I "can" eat sugar again...I am having a tough time with that last pound...  I think I finally go it off today.  Why is it so hard to what is good for us?  Without sugar, I eat better and feel better over all....but not as good as a fast hit of sugar makes me feel. **sigh**  We keep trying.

Ron and I have been going to the gym regularly.  We go in the mornings before he goes to work, for 30 minutes.  I am seeing progress.  I am trying to strengthen my upper body because it has become extremely weak.  In the beginning I could barely lift the lowest weights on some of the machines without straining and sweating.  Just this week, I moved up a notch on all the machines.  I am  also getting back into running.  I can now run 2 miles in 24 minutes.  It seems my heart rate gets up pretty high when I am running...like 170 bpm, but it feels so good to be running again.

Yesterday I thought I could perhaps handle a game of racquetball.  I felt pretty confident since we have been working out for the past 4 months.  I was unpleasantly surprised at how far I still have to go to get back to anywhere near the condition I was in last year (and that really wasn't that great).  Every racket swing felt like it took all my strength.  I was truly panting by the middle of the 2nd game.  But it felt so good to play again.


My hair is short and gray.  I haven't decided what to do with it yet.  Surprisingly, I get so many compliments on the color of my hair.  Strangers will come up to me out of the blue and tell me how much they like my hair color.  The problem is, I'm really not crazy about it.  Granted it is low maintenance, but I don't like me in gray just yet.  I think it makes me look a bit older and it must be so because the lady at Goodwill the other day gave me a 25% 55+ discount without my asking for it.  She just assumed I was old enough.  I'm not sure whether I like that or not.  I mean a discount is a discount...but 55?  Some days I am on the verge of dying it, and then I change my mind.  When it first came in, it was pure white, however it is getting darker and with two trims, the frosted tips are disappearing and now it is just a gray...to me.  Gray hair changes the way  colors look on me.  Earth tones are not so good anymore as the cooler colors are.  I like earth tones better.  Anyway...I am just trying to figure out what to do and have decided to not be hasty in my decision, because once you start dying your hair...it is a commitment.  My hair was also fairly curly when it came in...no as curly as some people I heard of after chemo, but a nice little wave.  Now it seems to be super straight.  No curl...not even what I had before chemo.  I have always wanted straight hair...I wonder if it will stay that way.  I guess I'll just wait and see. 

I have been busy getting back to my work of selling things on Ebay, and more recently, I finally did something I had thought about for many years... I opened up an antique booth at a new Antique Mall.  (It is on the Southwest corner of Country Club and Southern...for my local friends.   Here is a picture of my booth:

My mom just opened one across from me as well.  Here is hers...

I have always been afraid to do an antique booth, but I finally took the plunge, and it has been fun and so far, in only one month, I have made a profit.

Between Ebay, and my booth, I have been very busy, however, since setting up my booth, I have decided to take some time off of Ebay, because priorities have been re-focused.  I have just a couple of short months to enjoy with my before my kids go on Missions, and I want to spend as much time with them as I can.  Jacob and Matt got their mission calls a week ago.  Jacob will be serving the next two years in the Japan, Tokyo South Mission, reporting on June 22 and Matt will be serving in the Arcadia, California Mission, reporting June 8.  ...and my daughter Sarah is patiently awaiting her call which will come any day now...we are thinking Tuesday though.

With the three of them graduating in May and then at least 2 out of 3 leaving on missions in June, we are very busy...but extremely excited!  Ron and I will be sudden empty nesters...for 2 years at least.  We are planning a vacation of our own, still trying to decide where.  We are debating between finally taking that trip to Washington D.C. where Ron has always wanted to go (and I have been 4 times) or to Hawaii...The last state for me to visit (and Ron has already been)  I am voting for D.C...and Ron is pitching for Hawaii.  First things first...we have a lot to do to get the "kids" all prepared. 

Speaking of visiting states...  Today, I am cleaning house and packing for that trip to Alaska that Sarah and I were planning last year when everything abruptly changed.  When I took my kids on our road trips through the country, I told them I would take them to 48 states...but they had to take me to Alaska and Hawaii.  Well, Sarah is making good on her end of the deal this weekend.    We are hoping to see the Northern lights...that is why we are going in April.  It looks like pretty good weather...in the high 40s/low 50s during the day.  Pretty chilly for this Arizona Girl.  We will be staying in an Air BNB home near Fairbanks.  It is on the outskirts of town...so if the Northern lights are visible...we will get a good view.  From there, we don't exactly know what we will be doing.  We have some kind people putting us up in Anchorage tonight who have offered us a salmon dinner before we fly out on Monday...we are looking forward to that.  So nice!  We are planning on driving up to the Arctic Circle and to Chena Hot Springs.  We will also see some glaciers and of course Denali National Park.  It is not the best time of year to visit Alaska...but  we really just want to have a chance to see the Northern Lights. The rest is just some exciting extras, and I am looking forward to a wonderful girls road trip with Sarah!  I am so excited to visit my 49th state, and so excited to be picking up from where I left off last year.  Moving on...onward and upward!! 

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 slowly...like 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 crevice...you 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!

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, well...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 her...you 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 afraid...it really was bad...at 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...

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!

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 looks...so 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?













  

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 crummy...like 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 jam...as 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 though...at least the first couple days.  I think my head feels like a peach...so 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 again...so 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.

PNEUMOCYSTOSIS...

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. 

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 Vicodin...call 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 dept...so 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.........

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!!