Bitter....not sweet

About once a week David and I like to frequent the new Mexican establishment in town. We are quite familiar with directions on how to arrive there - as this new restaurant resides where our old one used to ( key word - USED to....Hallelujah!!!!) Anyway, it has become quite commonplace for David to order tea - unsweetened tea - but the silly little guy seems to always get it wrong, and he brings David the stuff that tastes like syrup....and since I prefer my tea to be bitter, not sweet....I don't offer to change - and David is so nice that he doesn't ask them to bring a new glass. He doesn't want to be wasteful.

And so it is - I prefer bitter....not sweet. But ONLY when talking about my tea. If we were discussing, say, a relationship - well, of course I would want it sweet.....who would want a bitter relationship?

I digress for one moment. I am (searching for the right words at the moment)....perplexed....yes - let's say that I am perplexed. So I am blogging - and I promise that by the end of this it will all come together. If not - then blame Mrs. Hayes for not doing a better job of teaching me how to get my explanatory paragraphs in the right place.......or was it Mrs. Carriger (nope...she was algebra).....Mrs. Clinton( not her, either....unless I am writing this blog in Spanish) Mrs. Charlesworth - no way was it her......even if it was I would never admit it!!! Okay - then we will blame KB.....he is like Mikey - he'll do anything....although he was drama. Oh well, forget it. Blame ME!!!! (do I need disclaimers to name people in my blog????)

I know that there are many family members and friends who read this daily and they pray for me - and they call me - and they lift my spirits............take Angela, for example. This is the cousin who took precious time out of her day recently to send me an email and let me know that I did NOT look chunky in the wedding photos - flat chested, prehaps, but NOT chunky. (I haven't heard that one before....bitter?) She is also the cousin I called from the parking lot of the bank on the day I was preparing to give my notice. As I sat there, I called Angela - my cousin who I knew would make me feel better about leaving the bank after 7 years at the age of 40 to stay at home with my children. I mean - who better for me to ask than a woman with four children who gave up full time work to stay at home with her kids - right? She listened to me speak for several minutes and then answered, "Are you kidding? I am definately NOT the person you want to talk to about leaving your job to stay home with your kids." (bitter....) After I picked my stomach up off the floorboard, she laughed, we cried - and she held me through the phone... (sweeet........) THAT is what family and friends do for each other.

THAT is what Christians do for people they don't even know - via the wonderful world of prayer chains, and simply listening to the voice of God. I am screaming right now - THANK YOU for heeding the call of God. Regardless of your station in life or where you are praying from.....

I grew up in the Chapin Christian Church. This is a tiny church in a town of 500 people where we had special music - nearly every week....potlucks after the service that EVERYONE attended.....Jr. CHi-Rho (5th and 6th grade), Sr. CHi-RHo (7th and 8th grade), and CYF (high school) that kids could not wait to be old enough to belong to.... women's groups, men's groups......Christmas bazaars, fish fries, church picnics, church programs, bible school.....I could go on and on - but in our little town of Chapin - this church was a family. It was a part of my family until I left after high school.....and whenever anyone was in need, the family came together. As with any "family" there are those who are memorable.....and one of my most memorable was Pastor Bob. Pastor Bob was a military chaplain many years ago. While in the military an American soldier raped, beat, and murdered his 16 year old daughter......and Pastor Bob counseled that soldier......now what does THAT tell you about him? Believe me - I am quite certain several of you just fell off your chair. This is the same man that was leading our church family when my father died and when my brother died 7 months later. I can tell you one thing for sure - Pastor Bob was one of the first people at my side.....and I will never forget his words of loving encouragement that only could have come from the mouth of a man of God. A man who loved me because I was a child of God. I am so thankful for that memory. He became - and still is - my benchmark for a pastor.

And now.....well, now I am going to say what to me seems unthinkable.....but I have struggled to figure out how it is that my church family has opened their arms and embraced me in a loving way - and I have never heard one word from the mouth of my pastor. I was diagnosed on September 26th. Today is November 30th. Two months have passed and I have yet to hear one word from my pastor. I KNOW THIS IS NOT NORMAL..............THIS IS WHAT PASTOR'S DO. Seriously - I mean, aren't they supposed to reach out to us.....ask to pray with us.....or, am I as the one in need supposed to reach out to him? If these words strike a bad chord with you - I don't know what to say. But let me tell you this - what I have learned over the course of the last two months......is that the best "pastor" is not the one wearing the robe.....but the one (or, in this case, the hundreds) that are praying and listening. You know what's funny???? Okay - maybe not funny, but peculiar? Okay - that's not right, either. You know what is telling? YES - that's the word - telling..........guess who I called the day after I was diagnosed? I called the pastor of my heart. A friend who is a man of God and loves all of God's children. A friend who I knew would pray for me. He knows who he is - he used to drive to Champaign, Illinois, to have communion with me when I was a struggling student, a wife in distress, and a wary Christian. Thank God I called him - it's the only pastoring I've had.

Let me clarify....the only talk with a pastor I have had. I have had a TON of pastoring!!! Whether you know it or not, if you love God and you open your heart - He will use you. I know this - because He used you to help me.......Thank you.....I love you!!!!

Listen......I am not bitter - I am thankful. I refuse to lay down and let the absence of the earthly man wearing the cloth keep me from the Man Who died on the Cross.

A moment of reflection

Dear friends, family, and loved ones....

I am asking for a very specific prayer. On Tuesday, my first day of chemo, I just learned that I will be having my blood drawn and taking chemo at nearly the IDENTICAL time as the father of a dear friend from high school. (both of us at the Siteman Cancer Center) His name is Jim Beard - his daughter Beth has become a very close friend of mine....a "circle of four" I will say. Four of us who email nearly every day - about life, family, and other issues. (I love you Beth, Kim, and Diana!!)

Jim has been a cancer survivor for 19 months (because he became a survivor from the first day he was diagnosed.) His battle and Beth's experience has taught me countless lessons about hope, loyalty, humor, and never giving up. While his diagnosis may not be what we want to hear, his spirits are high and we all know that God is in control. All I ask - is that I be who God needs me to be for Beth and Jim on Tuesday. If there are words I can speak....let me speak them. Let me let go and let God for them.......And pray for Jim and his family.

Family Heirlooms

I am a very fortunate person (to say the least). I was raised in a Christian home...with loving parents who taught me the value of family. I wouldn't trade my station in life for anything....well, except maybe more precious time with those who are no longer here.....

I have probably shared with you - individually - about some of the struggles I have had emotionally dealing with cancer. As always, the cancer is the easy part....the hard part is realizing how it is effecting others......and, most humbly, how it must have effected those in my life who had cancer before...

David and I were travelling back to Pittsfield one day after a trip to Siteman, and thus the conversation began. I am not really sure what started it all....but I began to talk about my dad. Now, my dad never had cancer, but he had to watch his beautiful bride be eaten away by it - and while I often think of my mom having cancer, I hadn't really thought about what my dad must have gone through....until I had the opportunity to watch David. On this particular day, I was telling David how thankful I was to have him in my life to share this...well....cancer. Not something you want to "share" with someone.....but man how thankful I am he is in it with me. As we were talking, I lost it.....I told him I was thankful that he and I would NEVER feel what my parents felt - knowing mom would die.....and to have to live through that. I can't desribe it, but to say I am so humbled....it brings me back to earth. I was going on and on about my thanksgiving - and David was silently standing by and listening. He gently grabbed my hand and blurted, "aren't you ready for lunch?" Yikes - I started laughing!!! It was a good breaker....

But what does all this have to do with family? Back to my dad......this past weekend I had the great surprise of having two of my cousins and a friend come to our house for The first shotgun weekend.....I knew Brent was coming...and then there popped up Jeremy!!! I was thrilled. I can not describe in words for you how exciting it was to see them. Later that night David commented that I seemed very happy about them coming....and he couldn't put his finger on it. I thought it interesting that he noticed.....men just don't notice that stuff. I mean - I can come home with orange hair and a nose piercing....and David wouldn't notice (a guy thing??)

Anyway......every time I am around someone from our Tennessee family....they talk about my dad - they say something about my daddy....and it always makes my heart skip a beat....and later, it will make me cry. And I knew that Brent would bring me that joy. And, folks, let me share what I didn't share earlier about that AWFUL Friday with 7B..... later that night, when the guys came in from hunting....Brent started talking about my daddy......and all I can say is - for every woman out there who knows the feeling of having your daddy hold you and comfort you....I had that feeling at that moment...and for an evening, cancer was no longer there.

Family - I am so thankful. That word is so much bigger than blood...it is a community of friends, christians, loved ones and kin.....and they are all gifts from God. Just like you. Have a Happy Thanksgiving. My prayer tonight is that God shows you the blessings He has given in your family and you are able to embrace them. I pray I will do the same.

Chemo to begin

I just received a call from Dr. Michel's nurse (Dr. Michel is my medical oncologist - he is responsible for my chemo treatments...but is NOT the attending physician on the clinical trial). I start next Tuesday, December 2nd.

9:45 Draw Blood
10:20 Meet with Dr. Michel
11:30 Chemo starts
2:15 Meet with Dr. Brandt

Okay - I know what you are all thinking. I said I was not going to do multiple things in one visit any more....welllllllllll I just couldn't help myself - Dr. Brandt is actually on the main campus that day and I can meet him right there....so I decided to go ahead and do it. PLEASE pray that they do not get behind and I miss this appointment - I think I would bury my head in a pile of cow manure if that happens....Lord knows it would feel better than missing his appt again.

And in case you are wondering - the nurse said my hair would start to fall out 3-6 weeks after the first treatment....I was hoping for 3-6 days. I am ready to start saving money on toiletries (shampoo, conditioner, root lifter, biosilk, shine and sheen, chi, and hair spray) and electricity (blow dryer, curling iron, flat iron), haircuts, hair colors, and all that other stuff that goes with hair. I think 6 months of chemo and I will be able to save enough money for our summer vacation with what I will save on my "hair treatments."

December 2nd - I can't wait!!!! This is so nice - they decided to give me Thanksgiving week "off."

A lesson learned.......about reaching out

So I went to bed last night and woke up this morning feeling very guilty about the unkind words I spoke about the girl in 7B. I should not have made those comments about her enlarged bottom. Having cancer is NO excuse for being condescending - and I apologize.......however.....

That girl - who I will refer to as "7B" deals with many patients every day - and every single cotton pickin one of them has cancer. She doesn't know who is terminal and who isn't - she had NO IDEA that I am not dying....but she did see the tears in my eyes and the utter frustration I was feeling. And all she could do was heave a sigh of relief (my assumption) when I walked away - because I represented additional work...and she had no desire to do any work which would require her moving off that chair. And that, my friends, is more painful than the cancer could ever be. I was a number to her....nothing more, although perhaps less.

She taught me a lesson......and I will never forget the helplessness I felt - all I wanted was for someone - ANYONE to reach out to me and make me feel better about what I was experiencing at that moment - and I am not talking about the cancer....I am talking about the "out of control" feeling that comes when you have no idea where you are supposed to be - and the only thing that can make you feel better....is finding out where that is. My situation is not life or death - but on Friday, I felt like it was.

I have said before that God did not give me cancer, but He has taken this affliction and is making me a better person. I will never again - and I mean NEVER again.....knowingly walk away from someone who is hurting and in need. I may only be able to offer a prayer, or a hug, or a smile....but I won't walk away - and I want to say thank you for not walking away from me.....for not judging me as I became......unkind....this will take some serious reflection for me - a lesson God is teaching me about truly giving yourself to others. I am ready.

I'm Watching You

David and I have a new game that we play (seriously - I know what you are thinking and you need to get your head out of the gutter....this is cancer we're talking about). We do - and ladies, I want to apologize in advance. I can tell you, without a doubt, I do not know of ONE woman in my life - married or otherwise, who would play this game with her husband. All I ask for is one "get out of jail free" card.....it is just the cancer thing....I promise.

We look at boobs. We look at all boobs. It is completely innocent, you see - we are simply trying to figure out what would be best for me. It all started after a little confrontation the other evening. I was sitting on the chair and I was having an "out of body experience" regarding my breasts. I told David that my boobs hurt....He responded, "that's because you don't have any." HAHAHA I totally did not think that was funny - but we laughed and so the conversation began.

We needed boob research, and in an effort to get some good boob research in while we were visiting the doctor, I decided to watch boobs for ONE HOUR. David and I agreed - this would be interesting. Actually, he rolled his eyes ( I think it was his attempt to try and convince me that he is only agreeing to this game because I am in need.....what kind of fool does he think I am?) Let me just say that I think boob watching is vastly overrated. Ladies, I watched for one hour as agreed.......and I was completely exhausted. I don't understand - men watch boobs all day long EVERY day. We know they do. And I have a question for men - I want to know how they ever get anything else accomplished. I think we have a serious problem here. Can you imagine how much more productive our society would be if it was ILLEGAL for a man to be caught looking at a woman's boobs. You are all thinking the same thing I am right now...."if you want to get something done right, you put a woman in charge." Am I right? Yeah - you know I am - we all say it.....and now I know why. Because men are too busy lookinig at something else.....please, tell me if I am wrong.

Ladies - I challenge you. Do it for ten minutes and you will see what I mean - there are many different types of boobs out there and I have an entire page in my calendar describing each type as well as the pros and cons. Boobs are a good thing. I do not mean to belittle them in any way - but looking at them every day? Let me just say - you are safe. I am no longer looking at boobs....way too exhausting for me. But I really did do that.....I hope you don't think less of me - it was just an experiment.

No way is this endorsed by God - since He is a woman. I think I am on to something here.

Confessions of a blogger

Cancer Sucks. Okay - I'm sorry....I know I'm not supposed to say that.....but there are days (albeit very few) that I think this cancer thing really sucks.....and Friday was one of those days. My cousins from Tennessee had shown up Thursday Night to hunt - and I was so excited to have their company...then Friday came and it wiped me out so I didn't get to visit as much as I wanted to that night - that REALLY made me mad...... I just want to talk right now......and release some of this.......pent-up frustration.

As I reported earlier, Friday was a "doctor appointment day". In my attempt to be frugal and save money, I had asked the coordinating nurse to try and get all of my pre-chemo stuff in on the same day as my reconstructive visit...and she did. She actually called me at 1:00 last Wednesday to say she was putting the itenerary in the mail......Okay, I am not a rocket scientist (and if you are, no slam intended) but I could figure out pretty quickly that her letter in St Louis was not going to reach the sticks of Pittsfield before I left at 6am Friday....all I wanted to do was say, "DUH."...but I didn't. I ALWAYS remind myself that this is definately no situation in which I want to be a hard-nosed customer. Some of these people stick needles into my body - I never want to upset them......

Moving On....I told her it would never arrive and I gave her a fax number. Once again, I am a moron - the number I gave her (unbeknownst to me at the time) was the wrong number...so I never received the itenerary. NO PROBLEM.....I told David that according to my fantastic skills at mapping out drive and arrival times, we would have 30 minutes to figure out where we were supposed to be. What I did know for sure (thanks to Paula who called at 5:30pm on Thursday to confirm) was that I needed to be at the Radiology room at 9:30 to have a port-cath inserted at 10:00...great - I could definately manage that.

We left Friday morning at 6am......and, I am happy to report that we were able to listen to our buddy Troy on WEAI until we were about 5 miles (or so) from I70....I was so stoked about that!!! he is the best DJ......and to hear the comfort of a familiar voice is very soothing.

We arrived at 8:49 on my clock in the vehicle......so I knew we had about 10 minutes to find where I was supposed to be (okay - maybe my mapping skills were a few minutes off this day) - I knew I was supposed to be somewhere at 9am......let me see if I can adequately describe for you how the next 15 minutes of my Friday went....let me just say - they were the most eventful minutes in David's life thus far. I can say, without a doubt, he spoke not a word......

8:49 - Arrive in the parking lot, drive up the "out" and park...(every trip we learn more ways to cut corners....legal and otherwise)

8:50 - walk the "bridge" and round the corner to the reception area.

8:51 - take elevator to 7th floor - I am absolutely certain Angela will be there (my medical oncologist's nurse)

8:52 - Talk to very large lady at 7B (yes - where all cancer patients must check-in...or suffer a horrible consequence) who has obviously never burned more than 10 calories in a day - because she never gets her big butt off that chair. SORRY...I know that isn't nice. I have to admit - I wasn't thinking that about her BEFORE I talked to her......it was AFTER she actually had the energy to look at her schedule and say " your name is not on the list. Your doctor is not in today." I KNOW THAT.....I want to see his nurse, I told her. "I don't know where she is" was her response - and it was quite obvious that if finding Angela for me would require getting her big butt off that chair, I was NEVER going to find her.

8:53 - take elevator to 3rd floor and talk to ladies in reception area. They don't know where I am supposed to be. One lady asked for a copy of my clinical trial - she saw some random doctors name on the list and called his office...they were clueless. I told her he was NOT my doctor....

8:54 - go to pre-registration area for my 10:00 port cath - I am thinking maybe these people can help me out

8:55 - I tell receptionist my dilemma...I am getting a bit irritated (and a little voice says to me....tread lightly - this is the receptionist for the people who will stick a needle in my blood vessel that will remain there for 6 months) That calms me down - for about 10 seconds. Long enough to have her tell me "I don't know who Angela is." FORGET IT....I said - and exited out of that joint like a firecracker.

8:56 - David, as he has been for the last 7 minutes, is carrying my jacket, my bag, my purse, my calendar, his coat, and some magazines - and he is following me like a faithful servant would...."good boy, daddy". That is exactly what Sophie would say to him at this point.

8:57- Back to receptionist - new lady - older with glasses, obviously more compassionate.....she takes my name. Given my 8:53 experience, I am not sticking around....and I order David to follow me again to the elevators to ascend to the 7th floor....I am going to break all the rules and go directly to 7A....I'll show them.

8:58 - Ask the nice lady with blonde hair....if Angela was there. She replied yes....and at that very moment Angela was walking out behind me....I swung around threw my arms up and yelled, "ANGELA!!!!!!" Seriously - everyone on the 7th floor heard me. This is a waiting area for patients receiving chemo and I have just caused at least three of them to wet themselves. No one says a word - confirmation, I am sure, that they have all had a similar experience. Or, maybe it was the horns that had slowly begun to grow out of my head......folks, I am a woman who likes to be in control - and I have just experienced the worst 9 minutes of my life. Would you believe that I was literally standing about 5 feet from where I was supposed to be at 9am? Of course you would - you guys know who I have put in control of this.

So the day began. I had blood drawn at 9am - best blood-draw of my life, thus far. NO KIDDING. This girl was good - I watched the whole thing and didn't even feel the prick. (I could totally say more on that.....but, uh, this is a PG site....and I was SO not in the mood for funny at that time.) After the blood draw I had to leave the 7th floor and go back to the 3rd floor (all in the Center for Advanced Medicine) to have an EKG and a chest x-ray. It was about 9:25.....and I know they want me at the port place at 9:30. I got there at 10:30 (Took them 65 minutes to do a 30 second chect x-ray and 10 second EKG). The Port department got me in at 11:30.....made me lay on a gurnee and wait until 12:30 and they finally started to do the port thing at about 12:45......So, while they are standing there inserting a tube into my neck to go down by my heart for administering the chemo, I indicate that I am supposed to be in nuclear medicine having my heart looked at - at NOON.....and then I am supposed to be at West County (30 minutes away by car) to see Dr. Brant at 2:00. One of the nurses kindly leaves the operating room to call both areas - they cancel my appt with Dr Brant and tell nuclear med I will be there when I get there.

I should have been relieved...I was - knowing we would be home before midnight....and I was also very, very upset. Dr. Brant was the doctor who was to release me from my driving restrictions and start me on some arm stretches......and I was told that all restrictions remained until I spoke with him....let me just say - I am driving, and I will call his office first thing tomorrow morning - I can handle the "no lifting" for another two weeks - but "no driving?"....that is plum ridiculous....

I end up leaving the hospital at 4pm.....and it ended up being a 13 hour day for David and I.....and I felt so bad for him - 13 hours sitting on those freakin hospital chairs......David looked at me on the way home and said, "That damn cancer gave me a back ache today." We looked at each other and cracked up.....he is a trooper - but no way he is going to let cancer keep him from giving me a hard time. He knows when I can take it and when I can't - if he had said that at 8:58 in the morning, I would have had the biggest meltdown he had ever experienced...Good call, daddy.....good call.

Back to the port-cath. I had PA Taylor, or Mike, Robin, and Maggie. Great team - but I want to talk about Mike. This is the guy that was putting the port in. For this particular procedure, which took about 1 hour and 15 minutes, I was awake. They used some local anesthesia to numb me up real good.....and covered my face - but I was awake.....and thought maybe I should take this opportunity to be really nice....remember - these people are INSIDE my blood vessels....I really don't want to tick them off. I asked him how many of these procedures he did....and last year alone he did 350 - YIPPEE!!! I was totally stoked to hear that.....and I complimented him, followed up with a comment about how I wasn't worried anyway because his hands were in God's hands - and I had put my life In God's control. (it was quiet for a second - but not at all in an uncomfortable way.)

I was so relieved when he responded.....we had a laugh about baldies which I will share in another post - and he simply told me to never be ashamed of this cancer. It was given to me and I had to deal with it - but I didn't have to be ashamed or try to please anyone....just be strong. Okay - I decided to listen to him. THANKS, PA Mike. I really like you!!

Needless to say, there will be no more attempts to consolidate doctor's appointments - we will simply make multiple trips. I figure it is a small price to pay....and who am I to complain? I have put God in control - so let Him be in control, and be greatful for all that He does for me......and know that whatever circumstance or issue I am dealing with , with respect to the cancer - or anything else in my life.....well......He is in control - what else is there to say?

Friday was a good day - and Monday? Monday is going to be even better. I am feeling great, looking forward to losing my hair.....and realizing that the best medicine is to surround yourself with things you love (because God knows that even I could not find humor on Friday......but I could find Him) - so, I have a photo of Nelsie and Gracie at Austin's game, mommy and Austin at Homecoming, Gracie doing her cheer, and Patti at the wedding....just a few of the things I love!!!! I love you, too!!!!!