Sunday, October 31, 2010

A Wedding, A Wig, and Trick-or-Treat ...OH MY!

What a weekend!  I was ecstatic to find out on Friday that my counts were up again!  I had this incredible backache on Thursday night where I could not lie down at all.  I had to put about six pillows on the bed so I could sleep sitting up.  I was so tired that I actually did fall asleep that way!  When I woke up a bit a few hours later, the backache had gone as quickly as it had come.  My oncologist told me that this was probably an indication that my platelets were coming up.  This will be the first time I will say I am glad for a backache!

I walked back into preschool after the blood tests happy as a clam (and I always wondered...just how happy ARE clams?)!  The kids looked great and the Halloween Party was full of their voices and laughter.  I loved reading and singing to them afterward.  It was a good day to celebrate make-believe and good news. 

Then, we went to a wedding I had been hoping to be able to attend.  And I am feeling gooooood!  I am so glad to be able to go and have some "normalcy" in the midst of this "cancer craziness".  I could even dance with my husband and "the girls"! The food even finally looks good and while I can't eat a lot of it, I can indeed eat.  Of course, no alcohol!  Even had I been able to, I'm afraid to get my stomach acting up again.  I am still being careful on what I put into it.  (And....I do need to thank an angel family that came to preschool to give me quite a supply of Prilosec, after they read this blog.  I know now this will be a mainstay for me while I am taking this chemo combo.  Isn't God great?  He just keeps showing up in the forms of others and surprising me with His goodness.)

I also picked up my wig from my hairdresser.  It looks beautiful and I am so glad to have it ready for next week when my hair will begin it's march off my head.  While there, I met this woman (I love meeting people and hearing their stories!) who agreed with me on the fact that breast cancer is just everywhere you go anymore...particularly with my generation.  She not only blames hormones, though, but all the chemicals we eat, drink, and have around us.  She was particularly angry about fluoride and is actually working to get it banned from our water.  I haven't checked this out yet, but she claims it is an by-product of nuclear waste!  YUCK!

Then, tired but happy, I go to church today and many friends from a nearby temple are coming in to be with us as a part of an interfaith weekend.  There was a great speaker, great company, and great sharing of our faiths.  While there, a new visitor to our church approaches me and introduces herself and reveals that she too is a recent breast cancer patient and had started chemo two days after me.  So, that makes three of us in the same church who are currently fighting this battle!  And that's not mentioning all the survivors in the pews.  I am more and more conscious of just how pervasive this disease has become.

So, now back home I rest, prepare for Trick-or-Treaters, and another round of chemo.....OH MY! (Double YUCK!)



Thursday, October 28, 2010

A "Mixed Bag" Day

I guess the title just about say it.  I am still feeling better and glad to feel this way.  I am glad that one treatment is behind me but I am already thinking that the next one is right around the corner.  Feeling better now, the tunnel I was in over the weekend seems far away.  I am not looking forward to going back down again.  But, I have to.

SInce my counts are low, today at preschool I needed to think more consciously about the times I am around the children and any coughs or sneezes in my direction.  One of my staff members even told me that I shouldn't be helping the children out of their cars at drop-off since their little hands have a multitude of good and bad stuff on them at all times.  She was right, I need to stop doing that at this time.  The children are really my joy and it's hard not to be able to spend more time with them as I usually do.  I even find myself turning my head when an adult wants to hug me because I just can't take a chance.  This is hard for someone who loves to hug and take those little trusting hands in mine as I lead them into preschool.

There are also a few pressing personal issues I need to deal with presently.  I mean, life doesn't just stop because you are going through chemo.  So, I need to think these things out and I am finding that I am looking at things a little differently.  A friend told me how these difficult times in our lives really are life-changing and she is absolutely right.  I am thinking that my new life after chemo is going to look different than my life before chemo. 

I told you in a previous blog that I had been kinda "going through the motions" with some parts of my life and kept being nudged by my inner self that something needed to change.  I just didn't realize that cancer would be that "something" and how this struggle (only beginning) will actually be the catalyst for propelling that future change.

I go tomorrow for another blood test to see if the counts are up.  I was feeling tired today...and it could be because I did not sleep well last night or that I did a lot these last two days...but it also makes you a little worried that maybe the counts aren't coming up.  I'm not sure if or what they do to help this at this point.  But I do know if they are not up enough on Tuesday, I cannot get my chemo.  Talk about a "mixed bag"...yeah, who really wants the chemo...but also I need it and I want to get through this as quickly as I can.  But I can't make my body do anything that it doesn't want to do, which is so aggravating (whoops...there's that control issue raising its ugly head again...down, boy, down!).  Also, the schedule they have me on now means that the week of Thanksgiving would be one of my good weeks.  If anything changes that schedule, then Thanksgiving could be "in the dumper" for me.  Yeah, I's far away yet and I have two chemos to get through before then.  And counts to watch in the weeks inbetween.   So, we'll see what happens.

So, today is definitely a mixed bag of feeling good to be feeling good and the anxious anticipation already beginning for next week.  

Tuesday, October 26, 2010

Time Out on the Swings

Ahhhhhh....there is nothing so good as feeling good when you have felt so bad.  I still don't feel like me...but I feel less like the person I was on Saturday.  Please...just for me...take the time today to take a deep breath and revel in your wellness!  Laugh out loud at it and thank God for all He has brought to your life.  It is an amazing gift and one we take too much for granted.

I am learning through this.  I am learning about God's goodness through others...about the value of friends and family...about the importance of words...and how we need--I mean really need--each other.  I am also learning that I don't need to be in charge of everything....I can step back and let others do for me and not feel the need to secretly change something or do parts over the way I would do them (please tell me I'm not alone in this need for perfection...I agree, it's a curse).  I am learning others are capable and willing and don't need my interference or my "help".  I am learning that I am just one person in this big world and that all around me are "angels in disguise"  

Yes, the euphoria of feeling better is a great high!

I am also glad to have an idea of the pattern of my next couple months and what kind of side effects I can expect from my body.  I met with my oncologist today to get my blood counts and to talk to her about my week.  I told her all and I am sure it was not unexpected.  She told me to continue the Prilosec and the Mylanta until the Hairy Hearburn had a chance to calm down.  These two items have helped enormously and I was finally able to sleep last night.  Unfortunately, my counts are still low, but she didn't seem too concerned.  Although I do have to go back on Friday to have them taken again.  But now that I feel better, I can start eating a little better and maybe that will help.

I went for my wig fitting today.  I think it's going to look fine.  I have heard from many chemo patients that they don't always use the wig as much as scarves or caps/hats.  And hey, every woman likes to have a reason to buy some more this is not all bad either.  I have slowly come to terms with my hair going "bye-bye" and don't really relate to it right now as I would have a week ago.  I am becoming more defined by who I am than by my hair.  And family and friends have helped me define who I am more than they know.  After the next trip to meet the "red devil", I am told it will be during that week that clumps will start falling.  At that time, my hairdresser is going to give me a short crew-cut and then, it's on to accessories and hair that won't frizz. 

Don't think that I don't know I will be swinging up and down again.  I do know that.  I just know now to be so thankful for the times the swing is going up instead of down.  And I need to remember that there are so many others just like me.  And they have all been through this and are now survivors.  And next year, when there is a Breast Cancer Walk, I will be walking proudly with my pink on and a smile wide and happy at just being there.

I am also aware that today there are so many others that are suffering much more than I know or could imagine....whether it is disease of body or mind or spirit.  We are just simple beings trying our best and sometimes we hurt and sometimes we cry and sometimes we laugh and sometimes we get it just right.  So, this is my "time out" on the swings and now I am going to start pumping my legs to start "swinging up".       

Sunday, October 24, 2010

Crash Time

The crash came on Friday afternoon. 

I had gone to work, still with that nagging headache, but suddenly began to just feel "different".  I went home shortly, and the headache started getting worse.  I also started to feel like my body just wasn't it's I was standing outside myself watching everything turn sour.  Every piece of food I looked at was so unappealing.  I didn't feel nauseous (or so I hindsight, I probably should have continued the anti-nausea drugs) but just knew I didn't want to put anything in my stomach.  Things that just that morning tasted good, I suddenly just could not stomach even looking at for any length of time.   The things I could put in my stomach gave me enormous heart-burn.  I was beginning to burp like a truck driver  every time something did go down (and I apologize to all truck drivers for that analogy).  I thought to myself, "Well, she said this weekend I might crash."  Little did I know the best was yet to come.

I don't think I can remember feeling as awful as I did all day Saturday.  The tunnel I was in was very deep and I just couldn't make my way out.  The headaches were still bad and I read that headaches could be caused by the anti-nausea meds, so I was afraid to take them, and afraid not to.  I called the cancer center to ask for advice, but of course, it's Saturday, so they were taking messages for the docs for emergencies and such.  I didn't feel it was an emergency (yeah...I was out of my mind), so I said I would wait until Monday.  More and more I just felt like I couldn't move and I was a pile of mush.  I called a friend who had been through chemo who remembered those headaches and feeling like I did and she did her best to "talk me down" from feeling like I just wanted to pull the curtain on the whole day.  She also sent flowers later with a note saying she promised "better days were coming".  Of course, being the mush I had become, I cried and was sure she was wrong and that I was never going to feel better again.  I was supposed to host an event at church the next day and knew I was just not capable of doing that, so I called a friend at church who could understand my request between my tears (yeah, there was a lot of that yesterday) and graciously took over the event for me.  Again and again, God keeps sending me company and strength through others.  And I am thankful for every conversation and act of kindness that everyone has shown me.  But the weekend was still so bad, that at one point I actually said to my husband, "I don't think I can do this."  He told me, "Hon, you have to...we'll get through this'll feel better tomorrow."

Easy for him to say....but he was right.

This morning, I got up and my head wasn't pounding as much.  I still feel like I am on a ship sailing over the ocean and I don't have my "sea legs", but I no longer feel like it will take every once of energy and strength just to get to the bathroom.  I was able to eat a little more today, and by this afternoon was even able to take a short walk with my husband right out front.  The air felt so good and I breathed it in again and again, clearing out all that yuck inside me.   Maybe I can make it through this round after all.

Of course, this is only round one.  Three more rounds with a drug that is called by chemo patients the "red devil"...and it is aptly named.  I hope this uphill climb keeps bringing me out of the tunnel.  We have a wedding to go to next Friday and it's hard not to know if I will be OK.  I hate not being able to plan my life....but for now, chemo is my life.

So, the crash did happen just as my doc said.  I've made a list of all my side effects so I can go over them with her when I meet her for my mid-week check up.  Hopefully, she can direct me somehow so the next round can be slightly more bearable.  It was indeed a very bumpy ride! 

Friday, October 22, 2010

After Effects

So, today is three days after chemo day.  The first day all was well and I was glad to be done with round one.  I ate very light, as they suggested and took that anti-nausea medicine religiously.  The nausea was not an issue and really is still not.  In fact, today, I am off anti-nausea meds and it's OK.  The next day I had to go back for a shot that was a "white cell count booster".  They said that there is usually no side effect except maybe some bone pain in your mid-body.  Fortunately, also that did not happen. 

However, yesterday, the port was becoming a little red (and I was as well), and pretty uncomfortable, so I didn't waste any time, but called the oncologist to ask if this was "normal".  I am finding out that many things in the cancer journey that we may not think are normal...are normal.  Since infection is always a risk, she asked me to come in.  So. for the third day in a row (chemo, shot, and now the port), I went back to the cancer center.  They were really great, and let me know that I was not being "silly" by worrying and put me right at ease.  It turns out, everything was OK, and that the steroids they gave me on chemo day were making me a little red...and the port was just bruised and sore. 

I have been able to get into work this week, and it is good to see the kids (did I mention I direct a preschool?).  Of course, I have to keep my hand sanitizer handy for those hands that have just wiped their nose...but it is good to see so much life and wonder through their eyes.  And...they are glad to see me!  You gotta love that!

My main complaint is this darn headache that won't go away.  I have it at night and during the day to varying degrees of annoyance.  I have been able to take Tylenol for it, but it just dulls it and it really doesn't go completely away. Today it is at its worst.  I guess that's going to be "my thing" side effect. 

Doc said not to be surprised if I "crash" this weekend...but did give the good news that the upswing will happen next week and I should feel better.  Just in start chemo number two.  Whoopie!  And they tell you that if your counts aren't in the right place, then it is delayed.  That would be a bummer.  You just want to get it all counted down and done.  But I am still a long way from there...just a beginner, in fact.  

My sister-in-law is coming for a visit in a week.  It will be good to see her and have the company.  She will give my husband some time to stop "hovering" and be able to go to some of his meetings and other things.  He is always involved in so much, I don't want him to feel he has to stay right here.  But, right now, it's where he feels comfortable being.  But I don't want this treatment to make him feel he has to give up his life.  

So today is not a great day, but it is also the day they mentioned as being the one I might experience any side effects.  So, I am hopeful that tomorrow will be a better day and the upswiing can't come soon enough!

Wednesday, October 20, 2010

The Other Side of the Mountain

I feel like I climbed the highest mountain yesterday and now can walk down the other side.

It was a long, long day.  We thought the port surgery would only be an hour, (which was how long the procedure itself DID take) but all the things that needed to be done before and after took a lot of time.  So, we began the day getting up at 6:15 am to be at the hospital at 7:30, but we did not leave the hospital until 1:00 pm.  Then, it was right over to the cancer center to begin the chemo.  And we were there until 5:30 pm.  When I finally did get home, I was so exhausted between the day itself, not sleeping well lately, and the anxiety....that it was all I could do to walk up the stairs to our co-op.   My husband had been with me all day also, and I know how tiring it is in hospitals to just wait, so I know he was ready to rest also.

I brought my bag of "stuff" for the day which included a "chemo blanket" from a friend which was happy with flowers and colors.  I was the envy of the room!  It does get cold in there, so you do need one.  She also gave me some other things that she had researched online that chemo patients need, and she was right-on!  I brought too much this time, but now I know what to bring for next time.

But the best news of all is that I DID IT!  And now I know I can do the rest.  My chemo nurse was so kind and so informative.  She went over each and every thing she did and then sat and went over the my whole regimen and gave me many tips and "orders from the doctors" on what to do these next few days right after chemo to ensure the rest of the days are somewhat better.  You start out with saline solution and then some meds for anti-nausea and other things.  Then she alerts you that you are about to begin your chemo.

I was most happy that the sedation that I received while getting the port still had me in a calm, dreamy state so that I was in a better place to begin.  When she came with the "red medicine" in that syringe, I thought..."This is it....this will be the beginning and if I can get through this, then the rest will be OK."  As one, two, three syringes made their way into my body, I was so pleased not to be growing a third head, seeing parts of my body change radically, or losing one of my senses (I know, exaggerated worry...yeah, I'm guilty!) but this made me feel much better about all that was going on.  The second drug also went in fine and then more saline, flushing the port, add a little heparin, and I was good to go.   (And...bonus...with the first drug your pee turns red...however, red pee is not as pretty as the blue pee from the surgery) 

Everyone in the chemo party room was fun to talk to.  I love hearing people's stories, so for me it is good to have others that are willing to talk and get to know you.  It is, kinda, like a family...a family of people caught up in something they didn't expect, and drawn together by the sharing of themselves.

Once I got home, I didn't feel any different.  Took nausea med before bed and again this morning.  Also have another to take at 2 pm.  Then repeat (like shampooing) the med before bed again tonight and tomorrow...etc., etc.  There is also an additional med that can be taken if these are not enough.  So far, so good...hopefully it will remain as so.  I have also been eating very lightly as they said.  The funny thing is, they tell you to think differently about food...."healthy" food can be tough on you right now and cause some reactions to your digestive tract that you may not want.  So, for now, proteins and grains are the rule of the day.  And water, water, water to flush it all out quickly.

We go back tonight at 5 pm for a shot, and then I don't go back for another week. As the chemo nurse told me, I will start to feel fatigued, then start feeling better....then it is time to get the drugs again.  But, now I know I can do it!

I am so thankful for this treatment that will only bring me more health in the future.  I won't be done for quite some time, and then the mystectomies are next....but in about a year, this will be behind me and I can help others who go through this journey.  I hope I am helping some of them right now.

Lastly, is something to think about...the male nurse that was with me after the port was put in was telling me how more and more women of my age are being diagnosed with breast cancer.  And he agreed that it is almost epidemic.  So, let's work on finding out just what we are doing to our bodies, with the environment, with our food, with medications.....that may be putting many of us through this journey that we don't really want to take.  Because if we don't have to climb the mountain to begin with, we will all be better off.

Monday, October 18, 2010

Power of Words

There is a lot of power in the words we use.  In fact, the way in which we deliver our words has just as much of an impact.  Words are our most important link with each other and with the world around us.  

As one of my friends said, "After your meltdown, you will probably feel much better."  And she was right.  There was just too much emotion and too many words that were piling up inside me.  And the volcano erupted so I could have some release.

It was a good weekend.  We visited our granddaughter (who is full of words...funny and loving) and her parents.  It was good to see my son again and feel his arms around me and hear "I love you".  Three words that are like a balm to our can never hear them enough.

The weekend became a reminder of words and their place in my life now.  I was asked questions about my surgery, my treatment, my prognosis, etc.  And I had a whole new vocabulary to use in my answers.  Listening, reading, and gathering information has taken a large part of my time lately.   Sometimes, the information just overloads my circuits, and I need to stop for a while.  At other times, I am searching for answers and read anything I can find.  And of course, this month is Breast Cancer Awareness Month, so news and information is just about everywhere.  You can't pick up a newspaper or magazine that doesn't contain an article about it...and it seems most people you see or teams playing a sport are all wearing something pink to bring attention to breast cancer awareness.  A good friend of ours earned her spot on the pink parade by participating in a breast cancer walk and she had asked if she could put my name (as well as others she knew who had beast cancer) on her shirt.  I was so proud and thankful that she did this!  But I also kept thinking...."wow, I'm now on someone's shirt...I never thought I would be there."  And maybe we should all take note of that.  Because you never know who breast cancer will hit next.  If you are reading this and haven't had your mammography lately, please use your words and make that appointment RIGHT NOW!

The words that meant the most this weekend were the words of hope and comfort from others.  There were no stories of "Aunt Mildred who had a horrific time with chemo or Aunt Sue who never made it past two years, etc., etc."  Yeah....people DO tell you those stories.  I'm not sure why they feel obligated to give you the sordid details, but they do.  And these words are definitely words you need to walk away from.  But the words I received were mainly from the members of my son's church (who all know my story) who just wanted to say they were praying for me, and knew that everything would be OK.  I figure right now, I have just about every Christian church denomination and a few synagogues praying some good words for me.  And I know God is listening and sending me the strength to get through this.

Tomorrow I have the port put in and then go right to the Cancer Center to have the first chemo cocktail mixed and put in an IV bag just for me.  I have always hated taking any kind of medications, so the thought of all these chemicals messing (and eventual healing....let's not forget!) my body is unsettling.  Not to mention the three prescriptions of anti-nausea meds that have been sent to me already.  I feel like my body will never be the same again...and I guess, isn't.  I'm scared, I'm nervous and I'm anxious.  But I need to do what I need to do.  

I received two items this weekend that also have to do with words.  The first was a NEW COMPUTER!  Ours was a dinosaur from about 15 years ago that was extinct and slowly dying.  I was starting to have trouble doing this blog at home as the computer kept freezing and making strange sounds.  My son works in an IT department of his company and his boss offered one of the computers that no one was using.  So, my son programmed it and what a blessing and unexpected gift that was from both of them!  Now, I don't have to worry about not being able to get my words onto this blog...and this blog has become good and necessary company during this journey.  

The second item was a sweatshirt from a couple we have known for a long time.  And it has the same words as my bracelet...."Fight Like A Girl"...but I particularly love the pink punching bags after the words!  Pictures really CAN say a thousand words.  In this case they say, "We love you, we are praying for you, thinking of you, sending you strength, and behind you all the way.  You CAN do this!"  And as my young niece would have said a couple years ago...."Word UP!"

Thursday, October 14, 2010

Reality Check

OK, today I had my meltdown.  I've been going through my days and coping pretty well, I thought.  Today, not so good.  Today was the "polar ice cap meltdown".

What pushed me over the top?  I don't completely know...and yet, it was everything.  I think I was a victim of the famous "If You're Standing, Then You're OK" syndrome.  You know what I mean...where you are going through all the motions of your usual day-to-day, (when all the while in your mind you are crawling into a hole) and all that people around you see is just what you are fooling the world into thinking...that you are OK...but you are definitely NOT OK. 

Today, I felt like I wasn't being heard.  I felt like I was letting people know..."Hey, cut me a little slack here."  But I mustn't have been using strong enough words.  I felt like others were trying to push me into making decisions or plans for things that were coming up in the near future...and no one was hearing that I just wanted them to go away because I didn't know what my near future was going to look like and what kind of plans I could make.  I am one of those "Superwomen" who love to run around in a cape rescuing the world.  But right now, I am the one who needs rescuing and no one is asking to put on the cape.

My initial chemo party is starting next Tuesday.  The same day as my port is put fact, I go from the port surgery right over to the cancer center to be plugged into the cocktail they will have ready for me.  So, a reality check really began in earnest when I heard this yesterday.  Yes, I have is mine...and it is not going to be easy getting free of it.

My oncologist gave me a hug at the end of the appointment.  She's a cutie (remember my husband thinks she is 17...but she actually did go to medical school and has practiced for a while) and she said all the right things for someone who must have to give this news and information many times in a day.  But, as I was waiting in the room for her, women were passing in the hallway with heads that were in various degrees of baldness and I was only too aware of what lies ahead.  Women love their hair.  In fact, we are often defined by it.  To not have hair to hide behind or to help "blend in" to the non-cancer crowd really defines what is in charge of our body.  And it is hard to give that power over to something else.

So, I began melting down at the end of the day and still have a meeting to go to tonight.  But again, thankfully, God sends us the strength...and the "cape" to wear in the form of others.  My hairdresser is giving me a wig and is going to help me through shaving my head when it is time.  I have known her since she was a child, and now she is helping me like I am the child.  A friend of ours whom we have known for more than 20 years called to say he is available to take me or pick me up from chemo whenever I want...just call him and he is there.  A good friend called just when I needed someone to talk to and the words we shared were words I needed to hear.  Two cards came in the mail from people I know who want me to call so they can share their experiences and help me feel less anxious about the chemo.  

This is how the meltdown can become something whole seeing God extending His comfort to me through others that love me and care for me.  So, I take a breath, take a reality check, and give myself time to become OK again.  Today not OK....but I know OK is there somewhere and I will climb over the meltdown to find it.    

Tuesday, October 12, 2010

Fight Like A Girl!

The other day, I received in the mail one of those rubbery bracelets (in hot pink, of course) just the right size for my wrist that has printed on it, "Fight Like a Girl" along with the pink ribbon breast cancer symbol on either end.  I wondered for the whole weekend who sent it?  I asked so many people if they were the one who sent it and was about to appeal to the sender in this blog, Then today, my son told me he sent it.  I love it!  It's my sentiments exactly!

It appeals to me both in the reminder to fight....and the directive to do it like a "girl" (thanks, son, for that "girl" image...I feel so young now!)Because, honestly, girls....I think we do a pretty good job of standing up for ourselves, of not giving in, of turning the other cheek (even if we are stomping on someone's feet at the same time), and of gathering strength, pulling ourselves up by the bootstraps, and forging ahead!  If I had to choose a team, I would always choose "Team Girl" over "Team Boy".  So, Go Pink!  We are beginning the fight right here and we won't stop...even when we see the "whites of their eyes".

I got one result today...and it was a good one (WHEW!).  My PET scan showed no sign of cancer anywhere else.  So, that is one result down.  I also went to the breast surgeon and got my stitches out and had a great talk with her while I was there.  I told her about my decision to do the double mastectomy and I don't think she was surprised at all.  I wish everyone could have a surgeon like her...she even gave me a big kiss goodbye at the end of the visit!  I go back to see her in 3 months and then we will open the conversation again and begin the planning for that particular stage in this journey.  (By the way, she did say to tell my husband that since he didn't come to this visit, she missed another opportunity to feel his lung swell out through his chest muscle...told you medical personnel like that!).  Tomorrow I go to see the oncologist at 4 pm to go over the chemo plans and all the do's, don'ts, and OK's and Not OK's.  

The surgeon also mentioned the "W" word....WIG!  And yes, I need to do this also.  A blog or two back, I told you how I am dreading being "bang naked"?  Well, you gotta love it....a neighbor of mine, who is also a breast cancer survivor (there are just too many of us around!), gave me a booklet from the American Cancer Society called "tlc" (yes, Tender Loving Care) that actually has BANGS THAT CAN ATTACH TO SCARVES AND HATS!!!  I am soooo excited!  It was like the greatest discovery since banana skins!  AND....they also have these hair pieces that can also attach to a hat or scarf so it looks like you have hair in front of your ears!  WOW...I can almost look "normal"!  What a country America is!  So, I will be ordering some "stuff" from them tomorrow and then going to the salon for the professional wig fit.

Lastly, tonight...I want to give a "shout out" to all the caregivers.  We know we drive you crazy, and we know you care so much and you are trying to be strong for us.  Every time I make some kind of movement that my husband thinks might mean I am hurting....he says quickly..."What's the matter...are you OK?  What's wrong?"  So I know he is still anxious about it all.  I see him watching me when he thinks I am not looking.  I know he hates the fact that everything seems to be changing around him and he just wants to go back to the way it was.  But it can't.  So...thank you, caregivers, for all you give us, for trying to hide your worry (but we know it means you care), and....for coping with the mood swings that are here to stay for a while....and mostly for loving us in spite of it all. 

Sunday, October 10, 2010


If you are a 60's child, like me, then you remember the song, Anticipation by Carly Simon.  And that's what I am singing these days.

I just finished two scans over the weekend, which had to be done before chemo time.  I figure my body has been seen both inside and out now by a multitude of people and lenses.  

The first scan was called a MUGA scan, and it was to see heart muscle function.  It is kinda scary that this is a necessary test to take before chemo since they tell you that "one of the chemo drugs is a 'little' (how little, I wonder) hard on the heart muscle."  I'm thinking, family has such good history with heart muscle.  I can't wait to see if I will pass this test.  If I do, I will credit my Grandmother, who lived to be over 90.  The rest of my family was just not on the "good heart muscle line" when it was given out.  I'm not sure exactly where they were, but I do know they didn't show up.  For this test, you first get a shot of a radioactive substance and then sit for half an hour.  Then you go into the test room, and lie down, with your clothes still on (no hospital butt-showing gown here) on a narrow slab.  They do cover you with the warmest blanket and give you a pillow, though.  Then, this weird box-like contraption zooms down over you and then kinda clicks its way around you.  It's pretty open, thank God, so you don't feel claustrophobic.  The best part about this test is that the test itself is only 15 minutes!  My blanket barely got cold!

The second scan was the PET scan which will check your body for any other floating cancer.  Again, you first get the wonderful "body-glowing" shot, and then they sit you in a recliner and tell you not to get up, walk, or talk for an hour.  It is a really comfortable chair, though, and you once more have a pillow and a warm blanket.  I sat and read a gossip magazine since all I could manage was reading something inconsequential.  After an hour, they come in (and thank goodness, they let you use the bathroom....there is nothing like someone telling you that you cannot get up which suddenly makes your bladder feel full!) and escort you to the test room.  This narrow slab was very long, and the cylinder for the scan very big.  It reminded me of a hot tub on its side.  But, the big opening didn't completely envelope your whole body at the same time, so again, not claustrophobic.  And your head was out of it for periods of time. This scan took 25 minutes.  You really hate having your arms above your head for that long, let me tell you.

So, now I've had these scans and for now, can check this off (oh yeah, I am sure that in this journey this will not be the only time for these scans).  I felt pretty good that they were done.  I got through it!  And I didn't freak out!  I was soooo glad....then....I remembered that now I would get another batch of results. 

As I told you, during BBC (before breast cancer), I didn't give tests a second thought.  I always breezed through them.  My husband was the one who had the "problems", not me!  But now, ABC (after breast cancer), I am the one with the "problems".  And coming soon... some more tests results...oh goody.  

We went to the movies today.  It was a beautiful day out, but my husband thought I might like a funny movie so we went to see, "Life as We Know It".  It was cute...predictable, but enjoyable.  However, whenever they had one of those touching scenes, I found myself spilling tears like it was no tomorrow.  I forgot that "tear control" is just not one of my assets right now.  Every heart wrenching scene is a reminder of the fragility of "Life as We Know It"...and right now, I know it from an entirely different standpoint.

Suddenly, I'm sitting there during the movie thinking (once again) about my cancer and being afraid of the results of these scans.  What if.....and What if....and OMG, What if.....???

It's hard to live through Anticipation....Carly knew it, and now I know it too!  I keep remembering the oncologist saying, "I don't expect that we will find anything else".  But I can't believe in those words anymore.  My initial surgery and some radiation was supposed to be all I needed also at one time.  But, it wasn' now I can't trust words as much as before.  

On my fridge, I have a magnet that reads, "Whenever I feel blue, I start breathing again."  A funny play on words...get it??  (clue:  if you stop breathing, you turn blue).  So, I will just keep breathing in and out until I get the results from these scans.  Sometime this week, my oncologist should be calling to set up the appointment to discuss this, and scheduling that dreaded chemo.  I figure it will be sometime after the port is put in on the 19th.

Since we know we will have this weekend, we are going to see our son, daughter-in-law and beloved granddaughter while I am still feeling pretty good.  I am looking forward to this weekend and being with them again (they live about 3 hours away).  And getting in a lot of hugs which will sustain me for a little while.  Hug Therapy from a child is always a good antidote to any kind of worry and sadness.

As I have told you, friends and family have been so kind and encouraging that I keep going forward because they are holding me up.  And God just keeps sending them on into my world (Go, God!).  I figure it is one of the only benefits of cancer....people give so much and you can just sit back and absorb it all until it fills every corner of your heart.  

So, these two scans done, and this week I have stitches out on Tuesday and wig fitting later in the week.  One thing at a step at a minute at a time.

" making me late,
Is keeping me waiting"
Hey Carly, I don't like waiting either...
or unwelcome surprises,
or things that go bump in the night!     

Thursday, October 7, 2010

What's It All About...Alfie?

How many times do we ask the same question?  Maybe not to Alfie...who really didn't seem to have it all together and is not someone who really had any kind of answers to give anyone; but it is a question we have all asked ourselves at some point in our lives.  I figure....for me...this is another good time to explore this question.

I don't expect to have a full answer, but I sometimes feel that I have maybe just a clue...a hint...a  foreshadowing....a whisper.  And I guess that has to suffice.  Otherwise, I'm just reaching too high and seriously, maybe don't want the whole answer anyway.

But besides wondering about answers pertaining to universal truths (wow...deep...and actually...I don't do universal truths)....well, actually, what I am wondering is why every time I turn around I am meeting someone who knows someone who had breast cancer, who is related to someone who has breast cancer, or someone who has breast cancer or is a survivor of breast cancer.  Just how pervasive is this disease?  And why, with all the attention and funding, is it still on the increase?  I keep reading about the effect of hormones on breast cancer and think of all the hormones we are pumping into our bodies during our lives....hormones put in dairy products...hormones we take in pill form or vitamin form or herbal supplements.  And the birth control pills that women of my generation took only to find out there were just too many problems after long term use.  Or what about that hormone replacement therapy that was supposed to help us during menopause, but instead just increased the likelihood of our breast cancer.  What's with all this?  What are we doing to ourselves?  And even sadder, I saw on the news this morning two "20 somethings" who have already decided to have a double mastectomy even before being diagnosed because genetic testing showed them to be at great risk for the disease.  Are we eventually going to be a "boob-less" society? And I don't mean the "idiot" variety, I mean the body part.

Yeah, deep thoughts today.  And I think this can be attributed to the fact that tomorrow is my MUGA scan (to look at heart muscle function before chemo) and the next day is the PET scan (to search my body for floating cancer buddies) and Tuesday I have the stitches coming out from the last surgery, and then the port inserted for the chemo cocktails on the 19th.  It is just a lot of serious stuff that lends itself to serious thought.  And I have also been doing some careful thinking about having a double mastectomy myself.  I'm not sure I want to wait around for the other shoe to fall (or other breast to give in to fairy dust) and I am thinking this might be a comforting...choice.

But, getting back to the question....what's it all about?  Well, as I keep telling you I am finding that it is not about cancer or good health or OK or not OK...but about US...our relationship with each other and caring for each other as God cares for us.  And not one...or two...but four recent events in my life brought this to my attention:

1)  A couple weeks ago, when this journey was just beginning, my mastectomy friend gave me this bible passage to put on my fridge, "God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it."  I count on that "way out" part, as she did, and I am slowly finding it.  2) Yesterday I received a note from a neighbor friend which was incredibly eloquent and included the beginning of the 121st Psalm...which just happens to be my "very best favorite" psalm to repeat in times of stress...and she couldn't have known that!  3) Last night, there was a healing service at my church and I again was moved by the people there and the hugs received and the message of hope.  4) Then, today, I get a package in the mail from my sister-in-law and brother-in-law.  It was this amazing, beautiful plaque in a wooden picture frame that said, "If God brings you to it, He will bring you through it".  Well, I don't need God to hit me on the head or anything (really, God, you don't), but I do think He is giving me a pretty clear message on "what's it all about?"....and I am listening.

I can listen now because I have turned down the sound on the world around me.  I guess these messages were around me all along, but the noise was just too loud...and I took too much for granted.  Take a lesson from me, and look around you for something or someone speaking to your heart.  Even Glee (my favorite show) explored "what's it all about?" this week in their "Grilled Cheesus" episode!  So I guess it's a question that we all need to ask ourselves every now and then.  As Mercedes said to Kurt:  "You have to believe in something!"  And that's where "the way out" mentioned above comes in and where I leave off for today.

Tuesday, October 5, 2010

Be Careful What You Wish For

It seems just a short time ago, I was thinking to myself that it sure would be nice to begin another path in my life, have more time to myself, be able to read more, not have to worry so much about enrollment in preschool and other concerns I had, be able to take long walks more often, etc.  I had such vision for what this new part of my life would look like that I could almost hear the birds chirping in the background as the sun delivered its warming rays to my face.  As the music began to swell in the background..... the doctor said...."We found a small invasive cancer in your breast."  Suddenly, the curtains came down on that scene and were replaced by dark woods with scary looking trees and the Headless Horseman riding straight toward me!

I think now, how fortunate I really was doing all I was doing and accomplishing so much without too many cares in the world.  Sure, I have my share of "crazy" in my life and a good heaping helping of "worry and concern", but all in all, I was coping pretty well.  The problem was....I wished and got my wish....but it was just not quite the wish I wanted.   

I am beginning a new path in life but it is one which will forever change me, those around me, and how I will feel about (trust) my body to do its job from now on.  Each time I will need to go for some kind of test....I will hold my breath until the results are announced.  No longer will I just take it for granted that things will turn out OK.  

And as I am recuperating/recovering/adapting/accepting and just plain making it from day to day for a while, I suddenly do have time to myself to read and to walk....but my thoughts all turn to cancer.  So, I am not hearing the birds as much or feeling the sunshine (well, yeah, it has been raining for the last week also)And I do keep looking over my shoulder for that Headless Horseman.

I am waiting for insurance certification before I begin chemo (gotta love our health system!).  Today I received the call to arrange the surgery at the hospital to insert the port into which the chemo cocktails will be poured (I am thinking of bringing a martini glass just for comfort).  Even though I was expecting the call, it still struck me like, "Wow...this is really happening!"  I keep telling people that I am taking it one step at a time, and not looking too far ahead because I don't want to drive myself crazy (although, yes, I enjoy that state right now as a part of "normal")...but I mean really, over the top, anxiety-ridden, fear-filled, gigantic crazy.

I received two gifts in the last couple days.  One was a big, soft, fluffy, all-encompassing white robe that I feel draining all the sad out of me.  When I put it on, I do feel the hug from the friend that sent it and I do feel like it is hiding me from the world and protecting me from "what lies beneath" (remember that scary movie?).  The second gift is from that friend of mine that believes in the "power of God" and the "power of shoes".  It is a pair of 5 inch hot pink suede boots that help me (for the first time in my life) to actually be over 5 feet tall!  And yes, the air is better up there!  I feel empowered, I feel strong, I am me roar!  And I need to learn how to walk in them before I fall over!  But both gifts remind me that there is strength to be found right now; particularly within these two gifts and with the friends who sent them and other people that surround me and of course, through God and His care for me (even in spite of big "C").  And these gifts will remind me that this is not going to be easy, but that I will make it to the other side and make it there cancer-free.  

Thank God (literally) for doctors and surgeons who love doing what they do and save us one person at a time; for technology that invents intricate machines to help us; research and labs and technicians that could even find that "speck" on my node; nurses that care and do so much...even trying to make you feel less afraid than you are; medicine and chemicals that help us become well; and for people around us that enable us to continue forward when we really don't want tomorrow to come.
I am having the port put in on Oct. 19.  Believe it or not, that was the first day they had an opening!  So, I am assuming (and we know what that means) the chemo will begin soon after that.  So, it gives me a little time.  And the funny part is, I'm not sure whether I'm happy about that or not.  Because I am anxious to begin paddling hard up this raging river I'm facing and pulling my kayak to shore and walking away.....towards the chirping birds and the soft rays of sunshine.

Sunday, October 3, 2010

I'm OK...I'm not OK...I'm OK

The title pretty much sums it up.  My emotions are in "roller coaster mode" and just when I think I've got it all together, the least expected thing makes my tears come. 

This weekend was a wonderful one for virtual "word hugs" from friends.  If you are ever wondering what to say to someone in this same journey (or a different journey),  just take a lesson from my friends:  let this person know that you care, that you are there for him or her, and you want to be able to do something to help.  That's all that's needed and it will make a difference to that someone and soothe the feeling of aloneness that the cancer or other fears or hard circumstances bring. 

Today there were ladies at our church who have gone through some difficult times which made their lives very broken until they entered this special place where they faced their demons and opened themselves up to forgiving themselves, looking outside themselves to others, and bringing God in to accomplish all this.  It is always a powerful Sunday when they come, and for me, it just tied up the weekend in a neat package of  "God Sends Help Through Others!"

Like all of you, I feel good about my relationship with most people.  It's the people that are hard to be close to that I have a problem with and I need to work on that.  I remember one mentally challenged individual who would come to our church after worship to attend Coffee Hour.  It was hard to watch him as he grabbed food and piled his plate with enough to feed a family of 10, talked with his mouth full, spit food all over the table and people near him, and keep shoving food in his mouth before he could swallow it all.  (Yeah, not too many people wanted the chairs next to him...and I was one of them!)  Then there are the "talkers"... people who start a conversation with you (usually about themselves) and after 20 minutes still haven't stopped for a breath.  You find yourself desperately seeking  some excuse or option for making your exit.  (It often entails calling someone else over and then leaving quickly.  The "talker" never skips a beat, and just continues).  And then, there are the people like me who are going through some hard stuff to talk about and you don't know what to say or how to act.  I'm here to tell you not to worry about it so much.  Just walk over, smile, and let your heart do the rest.  Take the lead from that person because it might be the time to talk about his/her difficulties....or maybe they just want a vacation from talking about it for a while and so glad you stopped by.  And....if that person does cry because of something you said....don't feel badly, but know you have said something that touched that person's heart at a time they needed it.  Tears are not the enemy...they are just a release from a strong emotion and if there was ever a time for strong emotions, I think cancer is one of them!  

I once had this saying on my bedroom mirror:  "My greatest fear is that there is no PMS and this is my real personality."  It just struck me funny and reminded me to not take my mood swings too seriously.  When the oncologist mentioned that mood swings might be a part of my life once again, I wanted to tell her that this "swinging" had already begun.  And I just never know when I will be OK....or not OK.

I am right now in the "golden limbo land" of pre-chemo cocktail party...before the chemicals mess with my body for good and for bad.  I can talk about chemo in this odd detached way because it is not a part of my personal history so I have no knowledge of how my body will react (again, OK and not OK).  I'm already playing with scarves to tie them into intricate bald-head-hiding masterpieces, and getting all kinds of hints from other chemo patients past and present about what helped them get through it.  And I have a great mastectomy friend waiting in the wings for the time when I will lean on her for her experiences.

So, today is just all about the realization that God doesn't choose to give certain people cancer or other diseases or have bad things happen to us.  Nor does He heal some people, and not others.  Instead, He sends us other individuals who come to fill in the cracks between "I'm OK and I'm not OK". a "crack-filler" or one of God's angels for someone you know or encounter today.  And, you know, they just may cry or change the subject, but they will love you for taking the time to acknowledge them.  OK?

Friday, October 1, 2010

Information Overload

OK...part of me is feeling like my brain is going to explode and the other part is so thankful to God for doctors who will explain the same thing over and over again to their patients and make it seem like they are saying it for the first time just for you!  That's a gift.  And one that is so needed when you are facing the biggest challenge of your life to date.  You want to know that the person sitting in the chair knows that you are a real person and that you are unique and wonderful (ok...I may not be all that unique and wonderful...but I feel that I have the "cancer pass" of being allowed to have a big head right now...and not just from too much information stuffed in there today!)

We (my husband and I) were driving to the appointment and were looking for the doctor's office.  We must have passed her building three times because we kept reading "cancer center" and for some reason, it just wasn't registering.  Finally it dawned on us that YES...I have probably this IS the place!  I don't know what we were looking for...certainly not Disneyland, but also not something that had "cancer" in it's title.  But, it's OK, it was a nice building as those things go with a parking lot across the street.  So far, so good.

The elevator doors open right onto the waiting room where we needed to be.  Kinda walking into someone's penthouse.  Only, you knew it wasn't a penthouse 'cause you remember that "cancer" name on the title of the building.  After I filled out about 29 pages of information on each limb of my body and it's insides; gave contact phone numbers for us and everyone I know and neighbors within a two block radius; my "geneaology diseases" back to Christopher Columbus (yes, I know I'm not Italian..but one slip up, one starlit night...who knows...there goes an addition to the gene pool); and my medical history from birth to present day (I need to hire someone to fill this stuff out for me from now on)...we were finally ready to be seen.

My husband's first reaction...he ACTUALLY SAID, "You look about 17...are you sure you're the doctor?"  OK, not exactly the best introduction.   But to her credit, she smiled (and probably thought, "I could doctor right around you and back, mister!") and we sat down.  Oh...and by the way, he didn't show her his popping chest (see first blog).  I'm thinking...probably a good thing.

She went through the same information that the surgeon did (and boy, you really are glad this is a repeat performance because it is just sooooo much stuff to remember!).  I sat there taking notes, which I actually tried to do while looking at my notes look like I wrote them while sleeping.  We both asked a few questions, and then (drum roll, please) came the moment we both dreaded and wanted to hear...the recommendation for my life.

So, here's how it goes:  usually what happens is:  surgery, chemo, maybe radiation, then hormonal therapy.  I had been worrying a lot about what would come first...the chicken or the egg (or surgery or the chemo party).  If the surgery (yes, the mastectomy is still forthcoming to ensure all that nasty fairy dust doesn't become monster cancer dust) comes first, there may be complications or it could jeopardize the chance to have reconstruction at the same time.  The priority is not the breast right now, though, but the small (and hey, she called it a "speck"...I love that word now) cancer that was found on the second node.  So, I get the "big C" pass right to the "Roto Rooter Special of the Day".  A mix of chemotherapy drugs guaranteed to wipe out any nasty little buggers that just might be hiding elsewhere.  There will be one 8 week cycle once every other week and then a twelve week cycle once a week for 12 weeks.  After this will come the decisions on the mastectomy and reconstruction (and possibly more node removal), followed by another cocktail party with hormonal therapy for a good while.  WHEW!  Here go the holidays!  But, then again, this is life we are talking about, so I'll take it!  And it all sounds so horrible, yet she feels it will have a good outcome in the end.

After this enlightening conversation, she gives me a flu shot and they need to take some blood.  "How are your veins?" she asks.  Me...confidently says, "Fine, I never have a problem."  And I didn't....until then.  My entire blood system embarrassed me by not backing up my words!  (No dessert today for you!).  Then the chemo nurse comes in, and pronounces my veins unfit for the journey and lets the doctor know I need a port (for some reason, I keep saying to myself...."any port in the storm"...I just can't seem to stop myself).  She offers to let me see someone who has a port and is getting chemo in the next room, and I go.  It really wasn't too bad.  The very kind lady with the short stubby hair was smiling and comforting and she tells me she feels so fortunate to have it since she doesn't have to get stuck all the time like some of the others.  I thank God for sending this angel to quiet my fears and then....the chemo nurse turns around and hands me a card telling me where I can get a WIG!  I had almost forgotten that part...OK, I'm lying....I WANTED to forget that part.

But, evidently it is going to happen.  I just want you to know that since the day I was born, I have had bangs on my forehead.  And that's all I can think about....PEOPLE ARE GOING TO SEE MY FOREHEAD!  Yes, it is pathetic, but my forehead is not my best asset.  I was even thinking of getting a "do-rag" with attachable bangs (yeah, cute, I know)But in the end, "It Is What It Is" (my "old-same's" favorite saying) and I don't want to seem too needy for hair.  So, I will go and greet the world after a couple weeks of chemo in my bang-naked forehead....or a very good wig.  I'm guessing it will be the wig...but I also hope I have the courage to wear a wrap around my head occasionally also.

So now, my future is laid out and I know now what is in store for me.  And it's a little better knowing that, actually.  My worst-est fears for my life have become a reality, but I am dealing with it.  I am almost proud of myself.  And whether you believe in God or not, let me tell you, it's better when He's with you through this....cause you can begin to see all the angels He is sending you just to be your company and your guides and your comfort.   And I am beginning to look at things a little differently and beginning to shed pieces of my life that I don't need right now.  And I am clinging desperately to the lifeboats around God, my family, and my friends.  I have to think of this as just the next chapter in my life....and you are invited along for the ride.

P.S.  When this is done, I am getting my second tattoo...a breast cancer ribbon with the words "Survivor" above it!  I'm just not telling where!