Good News with a Ton of Bricks

Drum roll please:   My white blood cell count results came back higher - higher - than the first blood draw  before I started chemo in January.  They are all still "below normal limits" - but this one was really trying and maybe even pushing to get into the "low norm" category.  Pretty amazing. 

Score one for a treadmill and at least a mile every day.  Score one for lots rest and no germ exposure as mundane and difficult as that is the one and a half days a week I feel "better". 

Score high in the victory pile under God's help this week. 

Back Story:  I woke up Saturday morning with swollen tonsils and called my family doctor more than a little concerned.  If I were usually healthy, I would have waited to see if it turned into strep or nasty tonsillitis in a few days - but I shouldn't/can't do that now.   

My new mantra in life:  DO NOT MAKE THE NEUTROPHILS WORK IN THE LEAST LITTLE BIT.....They can not do the job.  In a sordid way, I feel sorry for them - they just cannot stand up and take a hit.   They are on disability and make the quivering English captives under Chief Pontiac look suddenly tremendously brave. 

So Saturday morning, my doctor scripted me some antibiotics asap - which was wonderful.   But then of course I was really *worried* (and I know I should say *concerned* - but I was worried) that a minor sore throat and antibiotics would "break" my wbc's and kick me out of chemo again this week.  

But it didn't.  And you can imagine my smile. 

That-there folks, knowing how the white blood cells work a little, is amazing grace, and me and my wbc's say *thank you* for the prayers. 

Of note and concern for prayer now is my platelet count, it's tanking a little more than they would like, so I need to do whatever it is that platelets like - in order to coax them up some - and apparently they are not easily influenced as well. 

My mother maybe thought me a little stubborn when young - she should see my 51 year old blood cells.....

*******

My appointment with my surgeon went very, very well today.  (And, much to my relief, his eyes were open probably more than half the time)  He did a pretty thorough exam and asked me how I thought the lumps were feeling.  I told him I honestly had not checked the last two weeks - and as he is doing the exam - he says "this is good, this is excellent," and then he kind of whispered "you realize, they are barely palpable now"....... "they have noticeably shrunk".  He picked up my chart, checked it again, then held onto the counter and looked at me. 

WOW. WOW. WOW. WOW. WOW. 

I thought Scott might jump out the third story window and start whooping it up in the middle of four lane Oletangy River Road from sheer joy and overwhelming relief.  I smiled at my surgeon, very happy.  He kind of smiled back at me. 

We had a moment.

I felt a heavy, heavy load lifting - this was all going to be worth it maybe after all.  The trial study.  The 3 days of chemo each week.  The higher doses in chemo causing odd side effects and just plain overall ickiness.  

I asked him a few questions then he told me again the basic overall procedure - I am scheduled for surgery 3-4 weeks after my last chemo treatment which is June 21st.  If I miss any further chemo treatments, that date keeps getting pushed out.

I have worried about this cancer being in other lymph nodes in my body and he explained a few things that were very positive and said even if it is - the chemo I am getting now will take care of it.

And then the ton of bricks:  6 weeks of radiation treatments after all.  Every day.  Six weeks.  They-promised-me-before-no-radiation.

NO. NO. NO. NO. 

It's not only the inconvenience of driving a little ways each day for a short treatment.  It's not that I think radiation is bad in a treatment sense.  I just don't want more than my body has already had.  

When we first talked to my oncologists and surgeons at OSU, because I have had more radiation than the usual chickadee (I am sitting here with a dead thyroid full of it as I type) we were going to try to avoid that, because radiation has a way of turning around and biting you in the butt down the road.  (And call me a little crazy paranoid, but what other treatment puts radiation point zero over your heart - like the most important organ in your body - every day for six weeks????  I"m just a little curious on that one.....)


I did not want to hear that. 

BUT, in the grand scheme of things, it appears this is a shifting landscape as you go and respond - or don't respond to all the treatments.  I am learning to just take it and pray and wait.  This may change again, too. 


Then I went up a floor for my chemo treatment - I mean how sweet is that?  It's all in one nice building - I see my surgeon, get my chemo and even had a surprise visit from my oncologist that I usually am just seeing every three weeks now. 


She snuck into my chemo room while I was dozing in my wonderful land of "Injectable-Benadryl" and I woke up to see her face over me and she said in her sweet accent "I am so excited!!!!"  (I don't think I could put enough exclamation points after her comment)   Dr. Povoski must have been ripping up the phone lines with her after I saw him because as soon as she got away for lunch on the second floor, she was in my room at 12:08 -- very giddy and happy and excited. 


She said "this is such good news."  She went on and said "this is such excellent news".  She was smiling really big with her hands clasped in front of her.  Then she said something and I smiled and before I realized that she had said "I take a look too?"  she started to lift my shirt and I looked at the open door - ahem~hey! there are people in the hallway there - and she laughed and said "ok, ok.  I can vait until next veek for our appointment".  

Those folks at Stephanie Speilman Center are great folks, but when they get excited about a new drug doing something awesome, I am just another body appendage needing examined, looked at, discussed and I think there was some clapping - maybe downright applause - in there somewhere, too.......I'm not sure the breasts in the Sports Illustrated swimsuit issue this year got that many ooohs and aaaahs.  

As I have said before:  It is going to be a very humbling year.... You can tell they try to be *respectful* of your privacy and such, but the way those excited-over-the-new-drug folks acted today was kind of downright - nice. 

It's good to know that my treatment and my results are doing something other than making me miserable.

*******

And I certainly do not want to appear glib about all of this - I believe the drug is working, but after all the hopelessness and despair and fear and pain and grieving we have been entertaining the last 11 weeks, it just felt really good today to have someone look at you with excitement and real medical hope in their eyes. 

Finally.   


And then there is this:  A young fellow that Scott works with asked if he and a friend could come and pray over us every couple of weeks.  They have come twice and are two very earnest Jesus-lovers to the bottom of their very souls.  They are tall and handsome and strong, but they love the Lord and believe what the Bible has to say about healing and then put that into practice. 

They believe that when they know someone is sick, you go to them and pray over them for healing.  

I believe what the Bible says about healing as well, and I believe He can heal me.  Heal others.  But like a lot of others, I have seen it maybe "misused" enough to make me a little wary. 

And there are honestly times that God uses the medical profession to heal.  And there are honestly times He chooses not to heal.  I am ok with all of that.  I know that and do not hold any of that against God.  (at least until my next Carbo treatment - pain is a horrid master) 

But the first time Joe and Andy came into our home, they laid their hands on two sick and weary and scared people.  We have faith, we love the Lord, but we had landed in a deep pit and the rope was dangling pretty far above our heads. 

I cannot describe their prayer that is cloaked with power and earnestness.  I cannot explain the soul lifting and healing.  Words they said during their prayers have stuck with us for weeks.   

Last weekend they were healthy enough to come on Sunday night with their wives and they all laid hands on us and prayed.  Like powerful-weeping-cleansing-healing praying over you. 


And my surgeon that can be very much a tough as nails and no-nonsense type of guy, leaned his hand on the counter today and looked at me in *wonder*. 

Dr. Mrowzik, who has seen a lot of heartache in her field of work, leaned over me today, clasped her hands and said "Karen, do you understand what this means for you?"  


I cannot make some things up folks.  God is working. 

I still know my enemy, and my treatment just got extended by a few months today, but I will take what God has given me today.  And be glad. 


And I hesitate to say such things, as Scott's school was closed today because a really good teacher died of cancer.  Her funeral was today.  I don't ever want to get into the "you didn't have enough faith" or "God blessed you more" or anything like that. 

I do not know why God moves some mountains and not others.  If you want to go there, I don't know why He has allowed my cancer.  It's a plague of Egypt.  But here I am.  And a lot of others are there too. 

But in my mind, there is no judgement and no thinking that I have "extra" to make God bless me today.  In fact, it's kind of the opposite - I have seen a lot of folks with little hope there in those cancer treatment centers - I am totally humbled.  Like fall on my face humbled.  

He did bless me today, He did touch me and my doctors and all those around there with hope, and I am just going to humbly sit in the contentment and wonder of that.  Today.

He heard my cry and answered.  He answered today.  I still  have a long journey to walk, but today He heard and He blessed.  (Exodus - again and again)

And I pray mightily for the ones' at the funeral today as well.  She loved the Lord too. 

God does what He does what He does - and He doesn't always tell you the reasons behind any of His actions.  All I know is that I want to be obedient and accept His blessing - His daily "clump of grass" or "daily bread" as Jesus called it - and praise Him.   Today. 

music for my soul

I listened a lot to some early era Christian rock during the 80s, and so many of those songs play in my head now. 

Today, I simply stopped, stood up and worshiped when I heard this song again.   I liked it a lot way back then even when I did not lean any-wheres near this sound, and today it is exactly where I am at. Although I am not quite the mountain climber they talk about, and I am not "shouting", it touches me somewhere deeply because as I am listening to the Scriptures online I am so reminded of all those that have gone before me and if it is Exodus or Samuel or Hebrews or John - they all have this common theme - it's one story, and the Messiah is more than we ever thought or imagined Him to be. 

He stands over me and covers me when this song plays today. 

These are the "snatches" that jump out at me.

 "I'm weakened by the raging war, standing when I don't feel like standing anymore for the things I believe...."

..."surrounded by the lives of those who stood when hope seemed at an end, darkness all around and still I see".....



...."No matter how the days may go, He said the war would never slow....

...so lift your eyes and gaze on Him..... let your spirit sore where eagles fly...

....spread your wings and catch the wind.....

... the mountains moving in the night, don't stand a chance to drag you down"

And I'm only learning the "secrets of those that stared at death and conquered sin".... the big words here being "they overcame". 

ekklesia

Somehow, sometimes, we just get down right lucky.  Or better said as luck has nothing to do with this - we got *blessed*. 

We started attending a house church a while ago that friends of ours are pastoring and it is a lot of things we have always thought a church family should be.  They really read chapters of the Bible - out loud.  They talk about it with great care.  They really like learning about it all.

They care about each other.

They talk and learn about some things that have been a little lost in translation over a couple of thousand of years - and one of those ideas is "ekklesia".  Properly translated, an ekklesai is a "congregation" or a local meeting, and in the context of the Bible, a local congregation meeting of believers.  

Or better said than I can communicate:  "Usually the Greek term represents God’s people as distinguished from others, thus called out (ek “out” and klētos “called”) of the world."

And, if the rabbi I was talking about previously knows his stuff - and that we as the 'ekklesia' have a few jobs to do here on earth - we are finding out this group of folks really know how to "shade" their people; how to "guard" them and how to "keep" them.

They have poured out the love of God on us.  Anytime you are sick there are incredible, crazy little things that end up costing a lot of out of pocket money. They have made sure we have money to get to the gas station and the drug store and help with dietary restrictions.

They have sent cards and messages and encouragements almost daily.  They have become our "ekklesia" - our core group that shares our hardships, our burden, our deepest cares.

This is how it looks to us visibly:

This bouquet of flowers has been sitting on our dining room table for a couple of weeks.  It is the brightest, most creative, biggest piece of "eye-candy" we have in the room.  I keep looking at it and think of summer when hopefully my treatments will be coming to an end.  I keep looking at it thinking of the care it took to make it.  I keep looking at it and it makes the day brighter because it's full of beautiful bright colors and my soul just drinks it up on gray days.

This is a pink t-shirt that is now hanging on our curtain rod.  I cried the first time I  saw it - it has great meaning to me.  I had a pretty rough Saturday night a couple of weeks ago because sometimes when I feel better I think I am better and forget to take my meds.  I got shaky and sick and laid down in bed and Scott hung this up in my line of vision and I read it and re-read it.

They listened to what God had told me and made it tangible, touchable, memorable, and mostly that night - comforting. 

I don't have pictures of the kind offers of an ear to listen no matter what the time; or a driver to give Scott  a break or help with bad roads; or help with whatever is falling through the cracks and needing done.

I didn't take pictures of the gas pump and how much it is costing us to travel.  I didn't take pictures of the car repair bill that makes traveling an hour and 40 minutes each way feel much safer.  I didn't take a picture of them praying for us earnestly and constantly.

I can't take a picture of the love that they have surrounded us with throughout this whole mayhem.  But I can tell you they are getting a lot of things right - they have guarded us and kept us in a way that has indeed kept some harmful things stand outside our doors.  

Each card they send, each email, each message given has been nothing but comfort for us weary and heavy of heart.  A large shade tree of  protection from the hot glaring sun.

These are some of the dearest, most caring, kindest folks in a 3 state area.  They live what they learn.  God has truly blessed us by being a part of these people, by being loved by them, by being covered by their prayers. 

And I think we can honestly state that we are not sure where we would be right now without their care.  God is still tutoring me about *community* -- and these folks are the classroom I'm sitting in.

I told Scott when this all started that this looks like it is going to be a very humbling year for me - for a lot of reasons - physically, financially, mentally.  I don't like being on this end of the "needing help". 

They have made the "humbling" a little easier, a little less harsh.  Knowing that there are ones walking this with you - praying this with you - helping you with this all - is truly God's community working.

Right?

A husband's birthday

My kids have grown up being gym rats. 

And that not by particular choice.  Their dad coached everything, and he loved it - but he also put all those underpaid hours in because it helped make the house payment.

One season we added up his hours and divided that by what his pay was - it came to little more than $1 an hour by the time you strung all the practices together, all the prep time, all the necessary first aid and new rules meetings - all of it takes a lot of time.  

And if you count all the meals he paid for when stopping at McDonald's on the way home, some seasons were a net loss.  

We would go to his games and be the first ones there, because he's kind of anal about setup and all.  He's not going to lose a game because the scorekeeper or buzzer doesn't work well.  We would get there early enough to have time to make sure all of his runners had both shoes.  And proper uniforms.  We were usually driving one car at the time as Scott was going to school for his degree in teaching, so our kids would either have to tag along to be able to get to their own practices and events, or stay home in a big suddenly, spooky house. 

We would also be the last ones to leave, because if you have not spent a lot of time hanging out with jocks, the first thing you must note is that they need to, have to - rehash. 

Rehash the game.  Rehash the pivotal play.  Rehash the "what could have beens", and the "what should have beens".  Rehash "if only this player realized his potential".  Rehash problems and  how the other players and coaches were going to handle the problem properly.  Rehash the refs.  Rehash the parental anger outbursts thinking their kid was being treated unfairly.  Rehash all the problems in this one game to strategize the best way to approach the next practice. 

After a sporting event - and this goes across the board for any sport - Jocks are nothing more than underpaid-super-analysts in a jersey, rather than a $600 suit.   I say that with the utmost respect - they are pretty savvy, smart folks. 

I have yet to sit in a business meeting where millions of dollars were discussed more carefully and with more opinion and more in-depth outcomes than post-game analysis. 

And all that rehashing takes a lot of time.  After a game, I would sit at the top of the bleachers just watching the gym empty.  I would wait for him to come out of the locker room.  I would wait for him to talk to everyone in the whole wide world needing a word with him at that most important moment.  I would wait while he made sure his players had not forgotten anything that could end up in a never-find-again-lost-and-found.  He had to make sure everyone had a ride - he was sensitive on that having begged a lot of rides in his own youth. 

I would wait while he spent time patching together shattered egos.  He's done a lot of that.  To him no sport is so important that a player be "ruined" by the game, or the fans, or the other players and coaches.  He tells them one shot does not lose the whole game.  He tells them there is no shame in tripping in 5 inches of mud and losing valuable tenths of a second - they were in the race. 

It is so important to him as a coach that kids have a good sports "outcome" no matter what the score, what the pain, what the problems - you are a part of a team and you will leave as a team.  He wanted them to leave on the most positive footing possible when they felt all beat up and wounded. 

Other than the janitor that turned out the lights, we were always the last ones to leave.  

At one of those games years ago, someone came up and sat down beside me and said "you've got the worst gig ever".   And it is lonely being the spouse of a coach.  If you win, everyone is happy.  If you lose, it's the fault of only one person. 

But I smile now thinking on that, because they had no idea.  They had no idea what makes me love a man like that.  They have no idea what kind of deep set integrity, deeper set loyalty, and deepest love is set up inside that man. 

They have no idea how he has loved me all through these many years.  They have no idea how many times I was "checked" at the door, because of his love, his loyalty to me and our family.  They have no idea the depth of his integrity that he "was going to make this work, no matter what he had to do".

To date, that has buoyed us over a lot of life-storms.   I, on the other hand, see the reality, the end of the road on any given problem pretty clearly being an in-depth analyst in my own right, and know logically that we are just 3 steps from ruin -- and he says it won't happen.  He says he will do everything in his power to make sure it doesn't happen.  And if he can't stop it, it's not worth our time 'sweets', really, honestly honey.  Then he hugs me and says it will be all right. 

And we've had some big hits, and we've had some really hard times, but he is always right - we have made it to this day, this time, and we are alright. 

Except now.  My husband has met his biggest foe.  He has made it through life with the simple idea of being positive and motivating anyone, anything at any time to what can really happen.  To him the rest is just "loss" - and you have to put things in perspective - you don't always win, but you win what you can and make the bad become better. 


He can just do that by simple faith, and a sheer will that everyone can step up to the plate and play better than they thought.  

Until last week.  Last week he realized that he has met a foe that is impenetrable to "thinking through this positively" in the ways that has worked for him for decades.  It won't budge where you work hard to make it budge.  It won't succeed when you spend hours laying down the proper framework of success.  It won't work under any motivational promotion of spirit - even when doing all the right things to make it work.  It won't listen to any well laid game plan. 

It will not cooperate with any method, any work ethic, any reason.

So he is struggling to find new footing and forge a new path on all of this -- he realized when I was rejected for my second chemo treatment that he "couldn't just count it a loss" and "work hard to not make the same mistakes twice" and then move on to the next game.   Cancer doesn't play in any perimeter of any given game.  And he realized that and hit a bottom so hard and so deep that he wasn't sure what game plan book to pull out.

He was playing in a game that he was afraid of not knowing, afraid of missing some of the rules, afraid of losing.   

I wake up some nights and he is on his knees beside me praying over me - his hands on me, pleading with the One who can restore all things, to restore me.  He reads long portions of scripture out loud to me because he knows that there is healing in God's word and he knows it comforts me at bad times. 

I find unashamed tears in his eyes at times, because he cannot sort this out and make it work for me.  He can read everything, do everything, feed me everything to make my blood count come up, and it just won't. 

This is like no sporting arena he has ever entered.  This is like no gym he can negotiate with calculated plays. 

I see him pleading with God - motioning at the score table for a substitute to go in -- he keeps saying "put me in there, put me in there - I will play this game - take her out"..... 

But it doesn't work that way. 

And today, his birthday, he keeps doing what he knows to work - he tells me I am tough.  He tells me I am beautiful without hair.  He tells me he doesn't notice the bloating from the steroids.  He tells me that I am going to be fine. 

He hovers over me on the bad days and keeps me moving. 

It's his birthday, and he keeps pouring himself out for me.  

He tells me he doesn't care that I didn't get him a gift.  He doesn't care that we cannot go out to celebrate.  He doesn't care that we didn't have a party. 

He tells me he already has his gift, and that it is on the couch there beside him. 

He might be struggling with this convoluted, crazy game, but he's winning. 

 

Information they never tell you part 3

My trial nurse oversight person was back yesterday - Julie, hugs and kisses - and she was able to tell me some things that were of value that kind of fell through the cracks the last oh, say, 4 weeks.

Since I am in a study, they ask you the same 59 questions every time and note any little difference, but Julie not only noted, she expounded.

I told her that I could probably tell her the exact minute that my chemo pre-med IV steroids and anti-nausea wore off - that it was almost like I was going into shock.  I got shaky, and cold, and convoluted and confused and couldn't talk sensibly, wanted to vomit - and she just smiled at me and said "you are - it's steroid withdrawal".  And your chemo has just been waiting for the chance to come up and slap you hard so that is why the next 24 hours especially are difficult.

Then, on top of that, each chemo has it's own "hurt-you-time" and she suspects my poor Sundays might be more the result of the Ro, along with the 2-4 days that Taxal hits you.  And Carbo has been hitting the ladies in this study 4-5 days later - making you think you did beat it because it reacts much further out than the Taxal reaction.


So she said, yes it's steroid-withdrawal-shock, and treat it like shock - just get really warm and liquids and make sure you are doing your oral anti-nausea and just sleep as much as you can.

Oh, just save me a room with Dr. Drew..... 


Hmmmmmm....... drumming my fingers here and needing an excel spreadsheet which blogger does not give me.....

So I'm guessing plugging this into a spreadsheet it would look a little like this:

• Chemo IV Taxal, weekly, 2-4 days reaction time, which is late Thursday and Friday, or Friday and Saturday whichever it chooses
• Chemo RO, 1 dose for 3 days seems to hit on Sunday, and it hasn't been all that bad, just not good.  
• Chemo Carbo, every 21 days  slaps you down to nothing 4-5 days after administering......

So after chemo day Wednesday, I have a good steroid guarded day on Thursday, then "puff"  I'm down for a bit......
So Taxal + RO week knocks out 3 days more or less.  Carbo +Taxal + RO weeks knocks you out to 5 days????

I asked her how you recover enough to be able to turn around for the next Wednesday treatment, and she said the dreaded words I was afraid were coming, "well, we are reducing your Carbo - it's too high for you".  Then I wanted to cry.  (But I didn't you will be glad to know. Yet)

I told her I don't want to do anything to allow this cancer to get a jump start on me and she said the even more dreaded words I have not been wanting to hear - "if we need to, and sometimes when people cannot tolerate the high dose of Carbo, if we need to - we do four two-week doses of chemotherapy after your surgery. (it was a drug that started with an "A".  I was too idiot to write it down.)

The dread lies in the knowledge that this cancer is much more receptive to chemo now than it will be months down the road.  I don't want a lower dose of Carbo, even though it may slay me now, but since it tanks my blood so much, there is little choice.  

So it was a good day yesterday, but another "wish she hadn't said that" day, too. 

Actually, after having decided to use my "week off" last week to my advantage and start some serious exercise and diet and rest recovery, I felt better at the 10 day mark and it reminded me of how I would feel the end of the summer maybe.  Now that time just got knocked out a little bit further - like by 8 weeks. 

So my hope is in the Lord.  Sometimes it appears even though I have landed in a great medical facility, each thing just goes one notch further than I was hoping desperately it would not.  But the Lord God is my redeemer, my healer, my help in times of need, and I'm sure that he is holding me in the wings he showed me that day in the surgeons office; and they are all about me daily.  And I am still clinging to his rob.

Holding on really, really tight.

*****

Another odd enlightenment is that I told her I was having difficulty telling the difference between the fatigue that happens naturally because your white cells are lagging and low now, and actually defining when they were tanking too much.  I told her the best gauge for me seemed to be weepy, shaky days - which are uncommon for me at any other time - and she said "bingo".   And she said "those are the days you go to bed and rest to allow your blood to recover"........ I'm counting and there are not enough days in the week.

I'm hoping with more "enforced" workouts, and with the "tweaking" of my doses, that my chemo treatments will get into a rhythm and not be so severe.  And I am hoping that my blood gets better.  Scott is swearing by his cake and sugar and saturated fats that were in it causing me to drink lots of milk, too.  Maybe he's right - my blood was so shocked by it all, it just got happy for a bit. 

But 3 days of chemo each week takes a toll, that makes me want to fight it and count the days.

Fighting mad......

Today (Wednesday, February 22 - I don't know where this blog thing gets these dates and times sometimes...) went well.  My blood work came back up with a nice bounce and I told Scott if anyone ever tried to poison me with rat poison in increments to beware - it appears if you miss some "dosing" my body does a very nice rebound when almost taken out.  Something to think on here folks.

The white blood cell counts are still below normal, but high enough to do chemo.  I was back in. 

When I get my chemo, they do three "pre-meds":  #1 is a high dose IV steroid and although they have been able to step that dose down due to my body's severe hatred of it, it still bothers me and also helps me greatly.  Two weeks ago I was awake for almost two days straight with it -- but it greatly suppresses a body's reaction to all things your body hates about chemo, so it is a temporary good.  Today the nurse took a nice long 12 minutes to administer it (sweet girl), so I think the #2 pre-med won the day - injectable Benadryl.

I used to take 25 - 50mg of Benadryl to sleep every night so was not too impressed initially with the dose being given, but put that same 50mg into an injection and it is like snooze "wonder-land" for a bit.  And today it made me sleep until like 11pm.  I remember eating a big late lunch (the good part of steroids and their "after-bump" for some 30 plus hours), and I remember taking a walk with Scott holding my hand most of the way so I would not wander off with the geese, but that's about it.  I just now woke up (11pm) to *ahem* stay on my anti-nausea regime that they reminded me of today again and catch up on some water intake.

The third pre-med they give you - and along with the steroids I can almost tell you the very minute it wears off like 30 hours later - is an anti-nausea injection. 

They are all good "helps" on your body's reaction to chemo - especially when the dose kinks are worked out nicely like today.   They have their side effects as well, but when one is dumping rather large doses of lethal substances into one's body, you do what you gotta do to stay the course.  (I just keep remembering that there have been lots of others and years and years of trial and error on this 'pre-med "help"- so I am grateful for that 30 hours of help. )


*******

Last Wednesday when my blood work results came back for the second time as being too low to get my chemo treatment, I was devastatingly upset again, but found that I was also just plain old *mad*.

Like Scots-Irish blood line meets German blood line fighting mad.  I finally found a little bit of backbone quivering behind me and decided  I was going to step up my methodology, use the angry parts of my ancient ancestral DNA - along with a few brain cells - and plot some attack time on this evil invader.  

The NP that told me the results gave only a little advice on how to bulk up my WBC numbers -- saying again "you can't really", and the ever retold "it just takes time", but she also said "walk".  She said sometimes energy produces energy and helps some.

I told Scott on the way home "so I get the 'can't have coffee' and 'walk even when they almost kill you' cancer".  

I was a little bit pouty as well, maybe.....

I had been doing some cardio workouts on my "good" days, but had felt so horrid after "highest-dose-tolerable-carbo-hell" week that I had not been barely able to get out of bed, let alone put one foot in front of another.   Plus, after the way I have felt the last few weeks, I was just a little afraid of getting a half mile out from home and maybe not be able to make it back on bad days.

Even if I get my blood work climbing up high enough to do chemo, it is still almost half of what it should be.  So fatigue is kind of the name of the game.

(And the ever present germ watch.  I am getting paranoid two times over.  When this is all over I may just fill a bathtub up with hand sanitizer and swim in it I am that attached to it now.)

But the walk idea had me, plus, it is in this cancer's actual info sheet "regular exercise has been shown to help".  Help recurrence rates, help kill it off a little now.  Just help.

A friend of mine was texting me that day.  She does half-marathons and marathons like some people walk into the grocery store - she makes it look easy.  But I know she works really hard at it.  She runs lots of miles every day.  She is tall and beautiful with no makeup and is just a great athlete.  And pretty smart.

We have talked about Lance Armstrong before - we were both a little disappointed in him, but on the other hand you cannot deny his courage and "be-strong" attitude towards cancer.

So she sent me this text when she knew I was devastated beyond words -- it said:  "Quoting Lance Armstrong (then she "asterisked" a naughty word) but this is what he said and she was quoting him, " **** cancer.  Stay strong and I love u!!"  Then she said some funny things which made me laugh.

But she has been telling me to 'stay strong' the whole time - and I know what she means - she knows I am in for the "marathon" of my life, and she knows what it takes to mentally keep in the race.  So she gives me good words of encouragement that only athletes understand.

And it clicked with me.  I had another old school friend tell me to "reach in and find my rage and fury that you feel before you run on the football field".  And that clicked with me too, finally.  I am not so much an athlete, and would have no idea what to do on a football field except scream; but on the other hand I  have spent a good chunk of my whole life following my coaching husband around, and was pretty strong when young, so that I 'get' that.    

So each day this past week I have been going out with my "coach" to walk-jog our 1 mile loop.  I used to do that quite regularly early in the morning and I used to call it a "waggle" - it's a walk + jog + and I'm afraid a whole lot of jiggle going on out there on that little one mile loop .

But I used to run most of that mile, now 3/10 of a mile jog feels like my lungs have collapsed and my heart is ready to beat through my ribs.  So, I don't push the jog part too much.

Friends of ours brought us a treadmill to use.  I plan to use it.  I better use it, they went to not a little bit of trouble to get me set up here.

I plan to fight this thing.  My ire is up.

I have redesigned my dining room so I cannot miss it in the morning.  It's beside the door that I can open up and breathe in cold fresh air, and just go.  If I can do a half mile on chemo days, that equals a bonus.  If I can sit down and rest and do a whole mile, awesome. I might be in bed the rest of the day, but I plan to *walk*.

This might be some, oh say, "didn't have chemo for 11 days" bravado talking here.  But it doesn't matter.  I have to.

It appears to be working - my blood work bounced back a little higher than it did the last time I was rejected for chemo treatment.  (Scott made me a pretty luscious cake on Sunday too, so he attributes some of that to his awesome baking skills and me eating sugar again and drinking lots of milk with it)  I also lost two pounds which they did not quibble over so much when I told them the reason.  (the "waggling" not the cake part)

Now I just need a couple of people (Steph and Steve - you know who you are) reminding me of this *fighting spirit* of sorts come Friday.  And Saturday.  And Sunday.  I'm no athlete.  But there is a unique blood line in me that is finally stepping out to meet this foe. 

And a few words from friends.

Laughing like hyenas....... Bob & Lisa style

We have been holed up in this house for days.  And days. And weeks.  And days.  It has literally stepped into the realm of feeling almost a kinship to prisoners in one of the ancient high-tower castles, where they literally lock you up and lose the key. 

You can look out and maybe talk to people between the bars of the high window, but there is nothing else.  Nothing else. 

I have dreamed about vacations like this.  I have been in jobs where by the time you talk to all the staff, all the clients, all the phone calls, you can literally talk to 70 people a day, depending on that day's busy-ness.  For high level introverts like me, that's about 68 too many people-interactions.

So I have dreamed details about a special vacation, taking Scott and going to a mountain cabin and just *being alone* and *away* for a week. Or two.   Or maybe a lonely beach somewhere.  Just don't make me talk to a lot of people for a few days. 

And maybe the first two weeks here went ok - I am not feeling good enough to see anyone anyways, so turn on that tv, get a good blanket and recover.  You don't really want to see too many people when you are looking this bad to boot, so it was all ok.  The first couple of weeks..........

TV is a bore that doesn't make sense to me a lot of days.  I have lost my concentration skills for any movies.  With my blood work low, we can't do one of our favorite tricks and go to the local coffee shop / grocery,  get a latte and sit, read the newspaper, watch people, just to get out of the house.  I cannot even go into Walmart and buy myself a tube of chap stick.   I have to write down the color of the little box, the name and the type for Scott to pick it up when he gets groceries. 

We have hit isolation here folks. 

So Saturday, long time dear friends show up with a TREADMILL!!!  It . is. awesome.

But what was even better, was that they stayed and visited for a while.  Other than Morven thinking she was going to clean for us Friday morning, they were the first ones to walk into our little germ-free-high-castle-tower for a long time.

We should have hung out a sign that said "Beware - Haven't Seen Anyone for a Long Time - Enter at Your Own Risk"..... The sign might have had some sense of the feeling of the movie Jumanji - somewhat sinister looking vines wrapping around it making you wonder if you just might end up downright ensnared.

But dear friends walked through that door of ours, and it was the best medicine ever.     

We were downright giddy.  Some might even call it manic.  Scott and I talked over each other.  We talked and talked and talked.  Bob and Lisa's eyes were darting back and forth trying to catch the conversation from us - we were a little out of practice. 

I was on day 8 away from any chemo treatment, trying to do everything to plump up my poor blood and just starting to feel a little better.  A little lighter.  A little more like myself.  It was the biggest chemo break I have had - well, since the last treatment rejection.  I was ready - and heaven help me here because I am not sure I have ever said this phraseology out loud, let alone think it - but I was ready for some good old "human-to-human-interaction".....  I needed friends. 

And along with the treadmill, they brought another most wonderful gift - and what I have always, always loved about them - they laughed.   And laughed.  Life is crazy, stupid, funny, hard, mean and nasty at times, but with Bob and Lisa through all of that, you laugh. 

Laugh like hyenas. 

The low pressure movement from the south was going to meet up with the high pressure movement in the north and there was going to be some window rattling, fast blowing wind, cleaning out all things not nailed down, all things dreary and heart heavy.  

Lisa has a wonderful laugh that is so contagious, I'm guessing she could make  some Hollywood money and be on the laugh tracks for any sitcom.  People would laugh at Animal Kingdom if she got them started.  

We even talked for a while like I did not have cancer and we might visit them in a faraway location someday.  For a while, it was like the sting of this present time was soothed, and we just talked and laughed.

Bob and Lisa are some of the most generous folks you might run into.  Bob was a Kiowa-chopper fighter pilot, then taught those skills on an Army Base.  They have been lifetime military which is incredibly hard for any family, but they made it a bonus.  They have been to a lot of places, seen a lot of things, have a lot of interesting stories.

They have what I have seen in other military-war-hard-times-folks -- a very tender heart.  You would think the Army could stomp that out of anyone, instead, it sometimes seems it promotes it.  If you have seen the ugliest things in life, it makes some not hard nor mean nor uncaring; but makes them instead very tender.   Still tough as nails, but tender. 

When I noted on my blog that I was looking for a treadmill - I meant like Craigslist or something.  Bob posted "I've got a treadmill, a truck, and we are going to be in your area on Saturday and will drop it off".  How's that for military command for any given situation?   "Being in our area" meant they were kind of like taking a 60 mile round-about on an already long trip on their way to a wedding, but they did it.

When our kids were little, Lisa and I spent numerous hours on the phone trying to figure out the best way to raise our little savages into God fearing and God loving adults.  I mean, there are lots of books written about it, but when you have the little "Things One, Two and Three" in your home, you find great holes in those books and their idealistic thinking.  It's more like watching 'Cat in the Hat' balancing the whole playroom on his nose while riding a bike - what's a mum to do?  

We talked it out a lot.

Someone got us an extra long phone cord because I kept tearing the phone from the wall while talking.  I could do a lot of things then while on the phone.  With a cord.  Yeah, I'm that old. 

We talked about life.  We talked about making rent and house payments in the early 80s recession.  We talked about God.  We talked about everything.

They were closer than family to us.  We loved them.  

We spent a lot of time together going to each others home and would kind of just eat whatever any of us had on hand - we were pretty poor together.  Scott and Bob were both on the same work shift for a while so we would have conversations like -- "I've got a leftover pie"; "I've got beef and noodles" - and there you have it - we had a get together.  The kids would play, sometimes we would play cards or talk or commiserate with each other about the hard things in life; but it was all good.

We had  boatloads of "free fun".  I found that I am not much of a tennis player (I *ahem* prefer *badminton* instead), but they would round up some balls and rackets, and we went to the local tennis courts.  I secretly think Bob and Scott chose that particular one because they might have been the least bit embarrassed by my play-action-swings that rarely made contact with a tennis ball, but they said it was closest to the playground.  For the kids and all.

I mostly just tried to stay out of the line of fire of Bob's and Scott's wicked-fast serves.   Like we were at Wimbolden or something. 

Our little two-year old son loved Bob.  Like unabashedly run-up-and-jump-on-him-and-hug-him-hard-and-kiss-him-on-the-lips love him.  He loved "Weesa" better.  He would yell "WEESA" when they walked in the door, and she would open her arms wide and yell "SCOTTY" and he would just hug on her.  I always kind of did a subconscious car check when they left our house to make sure he was not deciding to change allegiances and join their family instead.

We didn't know then looking back one day how sweet those times would look in the rear view mirror.  

Lisa called me one day and said Bob was signing up to go back into the military.  He was going to learn to fly *helicopters!!*.  I didn't know anyone else int he military at that time. 

Stop.  Stop. Stop.  I didn't want to hear it - my heart was hurting bad. 

They had given it their best try to stay here but there was nothing in Ashland in a stagnant early 80's economy for them, so he was signing back up. 

I didn't like that piece of news one bit.  I hung up the phone and cried and cried.  I was afraid.  I had grown up watching Walter Cronkite and the Viet Nam war every evening in my parents living room.  If I remembered my news stories correctly, helicopters were shot down pretty regularly in war time.  I told them I didn't think it was a good idea.

They were like family to us.  Closer than family.  We had played cards and had fun and talked earnestly  and worshiped together a lot of times, and I knew I would never find another Bob and Lisa. 

But they left.  And I know some times were more lonely, and more difficult for Lisa than she ever let on.  I know even though Bob loved the Army, he needed both hands to count the number of Christmases he had missed with his family.

And that's the beauty of life -- they have had some hard times - but they were the brightest and giddiest and most fun folks and they gave us the best gift ever on Saturday - we laughed.  We laughed like I didn't have cancer.  Laughed like even if I did, it didn't matter.  Laughed like life was good.

Sometimes the best healing and best medicine God can give one, is old friends, and good talk, and good laughter.  We drank it all down.

A home away from home

When I first found out that I had cancer, then found out my treatment plan, I was a little bit stymied.  We had to be in Columbus for long days put together in long weeks the first five weeks, but not overnight stays.  Like arrive at OSU at 7:30am with parking and traffic behind that time, and then leave some days at 7pm.   The next day would be a "short" day - meaning 3 - 7 hours, then a long day again, etc. 

We have two daughters that live in Columbus - one fairly close to OSU - making that one of the reasons I chose the James Cancer Center mostly - proximity to family if needed.  But I was not expecting to have to be there for four days in a row, being kicked out at night, for more than a month.

What was worse, my blood work started sagging, and I had to be careful of my diet -- meaning no carry-out, no fast food, no restaurants, no quick deli items.  Period.

We could have gone to a hotel, but there would not be a lot of food options there for me.  And I have watched the news for heaven's sake - some hotels don't even wash the bed linens from the previous guest.  How was I supposed to be germ-free in that kind of environment?   What if the previous guest had the Spanish flu?  What if they had sneezed dozens of pneumonia germs all over the room just a mere 12 ours before??

If we had not help, we might have done some good old fashioned Biblical "perishing".

*******

One of the rabbi's I have been following teaches passionately what God is talking about in the Torah, then he says this:  "Now, go display God".   He says it with a big punctuation mark.  Like it is the most important thing in the world. 

One of God's ideas he teaches about that keeps swirling in my brain, is that we are to be "shade" to each other.  And that we "keep" or "guard" each other the other six and a half days of the week apart from our church pew sitting time.

Not only are we supposed to shake hands and hug on Sunday mornings, but we should shade each other and guard and keep others..... within this thing he calls "church".  Or put more Biblically - the Kingdom of God here one earth.  

hmmmmmm....... 

I'm sorry folks, but doing some of these studies all this past year, I am a little bit cynical on some points.  I agree with what they are saying, but haven't seen that played out so well at times.  I hate the evil that when uncovered is mostly swept under a very big rug and not covered well, but allowed to just sit there - visible but not visible.  

We don't offer so much shade to those in need, but rather stand over those who should be 'educated' (or stoned) with palm branches waving; while the hurting that needed "kept and guarded" crawl off in a corner to heal a bit. 

I've not liked what I see played out in churches sometimes. 

So God seems to think I need a little tutoring in this.

I just kind of got a front row seat in God's classroom of all things "what I expect from My kingdom on earth and how others truly fulfill that -- and how maybe you might fulfill it yourself, karen".  cough.  ouch.

*******

We had our family in on New Years weekend and celebrated Christmas.  Kristi and Cal offered to give up their lower level family room and let us take it over as much as needed.  This was before I knew my schedule.  They left Sunday afternoon, and by the time Tuesday night rolled around and we pulled in for my first full day of all-things-cancer-visits on Wednesday, Cal had mostly thoroughly cleaned and re-arranged that room for us.

He set up shelves for us to use.  They put a dresser in the room for us to store stuff in.  

They have a cat that I seem to be mildly allergic to - not a cat hair in sight.  They bought a special bed for us, with a special "heavenly-chushion-top" addition that is music to my poor weary bones when I lay down on it.  Those things are not cheap - but they got it for us.  

And that was all before I even realized how heavy the next 5 weeks schedule was going to be.  They didn't blink an eye - they told us to stay there, they wanted us there, and they would do anything we needed.

Like Lysol their house three times over before I walk in the door.  Like both of them work crazy difficult jobs with a lot of heavy things at their work, then come home, super-clean a bathroom for me and the rest of the house and make sure I am comfortable.

And Kristi cooked some pretty awesome meals each evening when I was not even all that hungry.  But walking in, smelling the food I didn't think I wanted, it was good.  Very good. 

We wake them up at night stumbling to the bathroom.  We wake them up some mornings because we have to leave so early.

We are nothing short of tiresome trouble and yet they never, never made us feel unwelcome when walking through their front door.  It was the opposite - they worked 40 plus hour weeks, then ran home and made sure all was well for their "house guests".

For five weeks.

THAT is "displaying God" in a way I have never seen before.  THAT is giving shade to the weary and heart-worn, and sick.  THAT is keeping others and guarding others in a way that makes evil stand outside the door.  

Or say it another way - this young couple with a baby just a year old, who are extra busy and don't usually have time to do a lot of things extra these days because they are good parents to that wee one - this young couple did all of that for their loved ones.  And blessed them in a way that only God will be able to tell them when they get to heaven.

I have been pretty sick there.  I have been pretty fatigued there.  In fact, one evening I just laid down and fell asleep, then came upstairs later - and there was my husband sitting *between* them on their sectional sofa, watching sports, talking and loving on his grand daughter and having a good time.  Some rest and some relaxation before he had to go back the next day and watch one that he loves suffer.   He needed care too, and they provided it.

We had such good rest in the shade they provided.  We were not your ordinary house guests - it also involved helping to care for someone who is sick on top of the usual "get ready for guests then tolerate them for days" - but we never felt "tolerated" and they let it all flow out beautifully.

It was so sweet no matter how bad the day, to walk in and see little Baby Evelyn wave at us and sometimes clap her hands when she saw us, her sweet smile would brighten it all.  I didn't want to bring this dark cloud over their tranquil abode - but the sweetness over powered it.  

If I had to choose between a Martha Stewart guest house, or their comfortable, cozy nest - theirs would win hands down. 

They guarded us and kept us.   That's what they do at their jobs 40 hours a week, but then they came home and did it all over again.

I feel we were so blessed with their lavish love poured out on us.  


And I am so getting tutored......

Good Counselors

I have some really smart and wise friends.

I was thinking about jumping out of the study this week.  It kind of "checked" me when with all of my other extreme symptoms last week that I could not focus my eyes to see print for days.  Along with all the other pain, agony and defeat, I was wondering if I was doing the right thing.

If I have a window of time to jump on this cancer while it is still highly sensitive to chemo - whereas next summer these cancer cells will be a little savvier and wiser to the chemo trying to kill it and put out a sign pointing it in another direction - next summer may be a different story.  Now is the time to kick this in the ass.

If I have that window of time and am being knocked out of my very important *early* weekly treatments by low blood counts more than likely caused by trying to find the "highest dose tolerable" -- should I continue in the study?

Or should I bet my money on the "standard of care" treatment and be a little easier on my body and maybe stay with the weekly treatment regimen a little better....

I thought about it a long time.  Especially when I was so fatigued that I couldn't move much.  

On our long way back from Columbus last Wednesday, we stopped at a "lysoled" twice over friend's house for a bit that is halfway between here and Cancer Treatment Place. 

I talked to LeeAnn about it.  She questioned me pretty thoroughly on what the "experimental" drug was doing.  I cannot explain it, but I tried.

She asked me some more questions then repeated my answers back to me.  

She finally said, "wow, if that works, it's going to be pretty awesome for your chances of recurrence the next 5 years".

"But it might not work."

She asked me again what had to happen to make that one drug get to a "Trial Phase One".  I explained it again.  It's pretty extraordinary all the lab work and money that goes into getting one drug to the point of "Trial Phase One".  I like that part of the medical field, but also view it with a somewhat cautious eye.

The cautious eye part had her.  She asked me again who was behind the study.  Um, Dr. M.; OSU James Cancer Research Center; the Cancer Society, aka watchdog of America-all-things-cancer.

"oh, really?? all of those are on board??"

On the way home I realized she already probably knew all of that......

I talked with Morven about it when she came out to clean for us yesterday.  We had a pot of tea instead and she heard me out.  She had me tell her the width and breadth of it all.

She said she would never venture to tell someone in my position what to do.  She agreed it sounded pretty brutal and a scary place to be, not knowing which ship to jump on and all.  

Then told me she had visited a display in a museum once that was titled "The History of Breast Cancer".  They had visuals and pictures and she said "I never realized what they did for women with breast cancer in the early 60's - they sometimes even cut their arm off, too".

I told her I had seen those pictures and I realized how each decade cancer treatments had lost it's original horror due to a lot of studies and a lot of previous women walking some pretty horrible journeys.  I told her what Dr. Bauer had told me when he first discussed chemo with me.  He said "chemo is not the 'wrap yourself around the toilet for 3 days' like it was 15 years ago - we have developed some really good drugs to counteract a lot of those symptoms".

"And it's true" I told her, "I get a wonderful anti-nausea injection with every IV chemo treatment that lasts for two days".

She said it's *amazing* what they have learned along the way *studying* all those cancer patients.

I do not suffer anything like previous decades of cancer patients have. 

The blessed problem with my friends is that they understand a lot how my brain works.  I don't want a nurse practitioner telling me my blood counts are low again and trying to put a positive spin on it because in the medical field you are taught "how-to-give-the-worst-possible-news-in-the-best-possible-light".

In other words - take the dirty stuff and make a glossy ad out of it. Sell it. 

I didn't want that - I wanted to be in the blood lab standing beside the doctor when she read the results -- did she say "Oh **** - how can this be?"  Or did she say, "ok - we are exactly where we want to be, now we know what to do next week".

I need the real story, not the media spin on it all. 

Scott likes the glossier, spin reports.  And he repeats the words to me and they are oh so badly positive, and I smile and nod my head because he needs me to, but my heart desires the gritty stuff.  (yeah he has had to live with that for a lot of years)  He is awesome and positive and can motivate people like no other coach and teacher I have ever seen.

But I need the bare hard facts, ma'am. 

What does this really mean?  Am I throwing too much caution to the wind by trusting them with this study?

So these two friends completely independent of each other, knowing how my brain works, laid it out for me -- they both said the same thing at different times, at different points -- "if this drug works, just think what it will do for cancer patients in 10 years."

"If it works, just think what it will do for you in 10 years.  And your name will be on the honor roll."

They refused to tell me what to do, but made me look at it rationally, intellectually and led me by the hand to think it out and agree with what my ever-so-foggy brain already knew and kept sending out urgent SOS's to the shoreline lighthouses -- "WATCH HER - she's perilously close to the breakers!!  Keep her sailing!  Keep her on course."

Keep with the ship's master travel plan and maybe you will avoid some rockier places on that dark shoreline that you cannot see but are waiting to crash you none the less.

My brain knew that - but my body was screaming for it to shut up.  

The whole thing about God teaching me about community and how much I really need it is ever-present these days.  What if I did not have good God-fearing loving friends to hear me out - to listen to me worry, then remind me of what is intellectually right even when my brain is so tired and weary and foggy and I just want the pain to be over - what if I didn't have that community about me, praying for me, massaging a sagging will, encouraging me?  (I mean you have to feel with Scott here folks, he can only take so much of me *thinking* it all out.)  

Pain is a tortuous tutor - and makes you think and do things that you would not consider smart on pain free days.

I remember when we visited the Outer Banks two summers ago that we went to a little museum that showed the history of what many had done to save ships along the shoreline at sea.  There were literally hundreds of men that lived very lonely lives so that ships would not crash onto the rocks or get caught in one of the large sand bars.

I remember one picture of a man leading a mule with a huge lantern on it - and he would have to walk the shoreline up and back, up and back in the worst weather, just so the ships would have warning. 

This sounds a little corny and even a little "Christian cliche'ish", but God is ever so pounding this into my soul -- you need a few lighthouses on shore to send messages back to the ship in the horrible storm, helping you avoid the sand bars that could stop it all.

I think I even know a few women leading some mules with lights on them helping me see the warning.

God is kind of crazy good like that.

And I thought I could do this privately alone....

Q & A

A day to clarify.  We have received some specific questions a couple of times, so that probably means I have not been so clear or "on-message".  This is the "Clarification".  


Issue #1   A lot of you have mentioned that this blog page will not let you "comment" on it -- and I am really sorry here folks, but you are asking the wrong questions to the wrong technological-moron here -- I really don't have a clue. I'm the person that cannot even get a disc to play in this computer because it says it has  "Media" issues.  Well, I have media issues too, but apparently the computer warning has nothing to do with tv announcers..... 

If you happened to see what I actually do to work around some of the things I don't understand about this whole blog thing, it might make you laugh for like 3 hours.  Or 3 weeks.  I'm sorry, but please feel free to keep communicating any other way you can - we literally breathe it in - the notes, the messages, the songs, the words - it's all whispers of healing in our ears - especially on some of the bad days.  (you might note, I did figure out how to "italicize" in blog world and how to upload or embed a picture, although each time I forget and it is a whole new experience)    

Issue #2  Some of you have noted that you are unsure of my diagnosis, etc, and after looking back, that makes sense as I emailed some info to some people, but have not maybe been too specific on here......

And that might, oh, just be on purpose.  I am a private person to the extreme and have used this blog to give out information publicly as I am able to process it myself.   I still don't like the term "breast cancer".  I don't like how it sometimes makes half the population in any given room in any given situation suddenly very uncomfortable (in case you didn't realize - males are 49% of the population as of this past month).  

To me it's cancer, and it needs to be treated or it kills you.  I love the guys that realize that and can talk about it in that manner.  It's hard the whole way around - for guys, for women, for kids, for me - and so doing a blog gives me the ability to give out the information I can deal with publicly and the rest is *private* for a while. 

It is also the best way for me to inform a lot of people at once - one of the toughest things to do when down and out sick is to be on the phone for long periods of time or send out 89 emails -- this is much tidier and easier on us.  So I'm sorry if sometimes it seems too impersonal - or sometimes seems too personal.  It is what it is that day, that hour that I write it. 

Back to the original point here in "Issue #2" -- I have been diagnosed with Triple Negative Breast Cancer.  It is beginning Stage 3 and lymph node in type and nature.  There are two lumps in a lymph node chain confirmed on ultrasound - one in my breast, one in my armpit - meaning it has spread.

There - big heavy sigh - I said it out loud because I still have not really accepted that label "cancer" yet.  I keep thinking the 'Cancer Drive' is for someone else.  I keep thinking that I'm sick, but the word "cancer" is not stuck on that sickness yet.   

Triple Negative means there is not any hormone involvement so you cannot use some of the drugs that work well with other breast cancers.  It is aggressive.  It responds well to chemo in the early treatment, but becomes resistant to chemo later on.  It is more likely to recur.

After I left our first day at James Cancer Center, finally receiving a definite diagnosis and a definite "stage", I woke up at 1am that night and realized that they had given me a diagnosis, a definitive treatment plan, and the next thing they should have said was "prognosis" and they never did that day.

And they still have not and I have not asked. 

Issue #3  I have talked about this a lot, but maybe not explained it well - I was accepted into a "Trial Phase One" study on a new chemo drug.  I wanted to jump into this study for all of the reasons listed above that you should greatly fear this cancer - the trial drug is supposed to help with the T cells - and heaven me help explain this because for once in my life I sat through a doctors appointment and cannot tell you 1/10th of what they said.

And I was even taking notes. 

But if the drug does what it is supposed to do, it somehow re-wires your T cells a little helping them overcome this type of cancer better and also helps with lowering your chance of recurrence.  Which is good, because any lowering is a lot better than the odds of it recurring.

I am "Trial #6" -- the 6th woman accepted into this study.  Phase One means they know that they have tested this on everything from animals to cells to cancers grown in petri dishes and know that it works there, but even though Phase One means there is a lot known in the laboratory, there is a lot that is unknown in regards to human response.  This particular study is to determine the "highest dose tolerable" - which after last week has taken on a whole new meaning inside my body - and I have come to believe those words were knitted together in the very pit of hell.

I am being given the normal chemo treatment for this type of cancer - which is weekly - because they want to hit it hard and hit it fast; and the experimental chemo drug is in addition to the "norm" - a tablet that I take 3 days each week.  

They start out with the highest dose on those drugs and "tweak" as they go along.  My body apparently found the highest dose tolerable of Carbo + Taxal + Ro two weeks ago and is still in recovery - my blood work tanked enough to make me lose another week of valuable treatment this past Wednesday. 

Issue #4 Treatment Plan -- As stated above the treatment plan is to do chemo weekly to knock down the aggressive cancer growth as fast and hard as they can.  In technical terms, I will have 6 cycles of chemo which include 3 weeks in each cycle.  So the total chemo treatment is shorter than some because of the study drug, making the total time 18 weeks.  Now that we have added two "missed" weeks into that number, I end up finishing chemo late May or beginning of June.

After the chemo treatments are done, I go in for surgery and my surgeon noted very importantly:  "it's an 8 week recovery".  At that time I scoffed a little, but after the last couple of weeks I have had, I'm not scoffing so much anymore...... I guess removing lymph glands along with everything else is a bit tricky and has some side effects for x number of people - and he wants to make sure as much as he can that I am one of the ones not developing lymphedema. 

At surgery, they do a thorough pathology on the lesions and surrounding tissue and if they do not find any cancer cells, I am almost done.  That happens 25% of the time with this cancer and subsequent surgery.  If they do find cancer cells, I go back into chemo for a while.  (Radiation is a follow up option sometimes, but in my case they would prefer chemo instead) 

Issue #??  (my brain is still in somewhat of "chaos-chemo-fog" so go easy on my counting here)  I am on a special diet that is called "low bacteria" or "low infection" diet.  It means I cannot eat anything fresh or from a bakery or from a deli - the idea is no "finger touches" - thus decreasing the chance of any germ giving challenge to my pathetic white blood cell counts.

So basically, if it is overly processed and overly indviualized packaged - it's ideal for me.  I have become especially fond of the individual apple sauce bowls - they are a life saver - I can pack them along to appointments and they are easy on the stomach.

I cannot be around germs since my neutrophils seem to like the diagnosis of being "neutropenic", my platelets also go down and up and the rest of the WBCs just seem to wave a white flag sometimes and declare they are not playing in this sandbox any longer.  So if someone has a temperature over 98.6, or a cold or a flu or anything that doesn't normally cause a lot of problems, it could put my neutrophils at the "surrender" table fast.  They just can't stand up to much now it appears.  

Sideways Info:  Several people have commented on my "port" situation - I don't have one yet - the reason mostly is that being in the study means I have to usually be IV cathed in two places - one arm to put the chemo in, and one arm to take the study blood draws out of.  They cannot use the same spot for both things,  so a port would not help that situation.  It's getting pretty slim pickings with the veins though, so I'm guessing I will be "ported" up soon.

Needle sticks don't bother me - at least not until the one last week - it burned.   Scott is even learning to sit through them - he's had enough of his own, but doesn't like to watch them done to me. 

I'm not sure if I have answered all of the questions yet.....

*****

And that was all "medical-techie-karen-talk".  Those are the facts as they have been presented to me.  My other side of my brain is not so concise and sterile.

My cousin sent me a card and in it she said she walked around the house for a week saying "no! no! no!"..... I kind of did the same - my brain just kept saying "I don't want this - I don't want this - I don't want this".

My obgyn told me the results of the "suspicious mammogram" and subsequent ultrasound on the phone the next day -- it was the Wednesday before Christmas -- and she just kind of blurted out "Karen, you have some icky looking cancer - I want you into a surgeon fast".  I knew it when I watched the ultrasound the day before, but I guess there is never a good way or a better "place" for someone to tell you such things.

The sonographer had found the second lump because I pointed it out in my armpit, and that's where the ultrasound stopped.  There could be more - could not be - but they do not do any further scans, instead blasting you with chemo to get any stray spots anywhere "under control".

I would rather kind of know.  But we are dealing with a lot of unknowns as of late, and you just have to put some trust in the people that see this every day.  (don't worry - I have checked on some sites and they do seem on target, smile)

Our whole world has kind of stopped.  I was surprised today that February is more than half over.  I'm glad Scott remembered to make the house payment - my internal clock says it is still January.   I am losing huge chunks of time to hospitals, doctors, chemo, chemo reactions, and recovery.  I go to bed after chemo on Wednesday and look at the clock next and it is 11am Monday morning.

It's foggy and chaotic.  And I could write a book on my downright hate and fear of high dose steroids now, but that is better left for another day.  My body does not like them.  When I called my symptoms in last Monday, I told the nurse that my internal organs told me I should not have any further steroid injections - and she glibly said "oh steroids - they make you hungry, fat and happy - what's not to love?"  That was her trained response, so I will not hunt her down and hurt her, but I am going on 10 days from my last injection and my body is still "puffy" and bloated from them somewhat.

******

At any rate, hopefully, this clears up any misconceptions or unclear messages from me.  And again, thank you all for praying.

Baby Evelyn Friday...

Sometimes it's the smallest things that can be the hardest thing about chemo.

This was my Google Calendar reminder this morning....... and it fills me with sorrow.  

Baby Evelyn Day - don't forget to pick up one "A"

When	Fri Feb 17 7am – 5pm Eastern Time
Calendar	Karen Gerwig

******

A couple of years ago my thyroid decided to go crazy on me - like it went lunatic to the farm crazy - and I ended up with Graves Disease.  It was a bit trying and my thyroid refused to cooperate much of the time making me go to a part time schedule with my job.

I eventually recovered (although residual lunatic liabilities have hung around some) but stayed at part time with my job, because I kind of had two jobs by then - one was all office and corporate-world suits and  heels - and one was a pair of jeans and a snowman sweatshirt that someone had given me in 2003, but was soft to the touch for my *clients* - this 'other' job had the title "Grandmum".

I loved it.

So I had a little schedule of sorts - when Heidi had her surgery and long recovery, I did the office gig on Mondays and Wednesdays; did Tuesdays with baby twins; then headed to Columbus to help her out on Thursdays and Fridays.  

I was one whipped Grandmum come Saturday morning - but it.was.glorious.

I would call Heidi's phone at 7:45am when I got to the red light at the Polaris exit and say "someone should be looking out their window pretty soon" - and two  little ones would squeal and squeak and sqawk, throw down the phone and run to the window, bouncing like jumping beans when I pulled up.

Millie was so short she had to jump - I would pull up, see her head, then not see her - then again two seconds later there is a giggling crazy smile and then it's gone again.  She tried standing on her dog sometimes.  She used a step stool, but still had to use her fingers like pliers on the window sill just to get a glimpse of Grandmum's car.

The coffee was always on - that Wes is one smart guy knowing his "grandmum-care-triggers" pretty well - we would chat for like 3 minutes, he would leave for work and then it would always happen -- Addy would look up at me and jump and smile and point at all the things we were going to do that day.  She could not wait - let's get this day started.  Now. 

Millie was so little then, and I would spend most of the day doing what her mother could not at that time - carry her around.  We would get the sweeper out and she just nestled deeper onto my shoulder.  We would fold clothes and she got plopped in the laundry basket while I changed over the washing machine.

And that Addy-girl always needed to be in my full line of vision.  Otherwise Grandmum's who were not paying attention would suddenly hear someone tumble down the basement steps because the stair door was left open.  While folding laundry once I heard her laugh and looked - only to find that she had somehow climbed precariously to the top of their pantry shelves - the ones with the glassware stored on it.

She could move.

We would run races around their house and I always told Addy "you can't outrun Grandmum" - which was an outright lie and more old Winston Churchill bluff and propaganda than anything else -- because if she put her mind to it, she could have been furiously riding her tricycle three times around the local park soccer field before I would even realize the door was open.

But she humored me with the races and she would laugh and hold up her chubby fingers and say "'ready mumum?  One - Du" which she would say very slowly and deliberately - quivering and laughing because she knew this little race around their hallway through the kitchen - through the living room - through the dining room and then back again was going to be so doggone much *fun *!!!  But she would hold up her fingers and then finally yell "DE" - and the race was on - Millie planted firmly on my shoulder and Addy running and screaming like the very banshees of haedes were on her tail - the two were connected somehow.   It appeared one could not happen without the other. Run, race, scream.  Scream, race, scream.  Run like your very life depended on the next 90 seconds. 

She would fall, Griswald would get tense, Millie would hang on for dear life and laugh and laugh, but we raced and raced. 

I called them "The Double A's"  - they were like the battery that could go on and on and on and on. We had some pretty good times.

When Kristi and Cal had their wee one last year. I wanted very much to develop a relationship with this new one so sweet - so we set up a schedule of sorts that I would come down two Fridays a month.  Wee Evelyn Wren proved to be the easiest baby-gig ever.  She took four hour naps.  I was worried - I had no idea there were such babies in the world. 

So I did what all unwise and foolish Grandmums do - I called in some "help".  I wanted Evelyn to know her cousins and wanted them to know and care and love on her.  So I told the Double A's that each of them would get a turn to go along with me on Baby Eveylen day - but only one at a time - I might be basic lunatic foolish, but I also know how many hands I have.

Thursday evening I would leave work around 6ish, get to Westerville after 7pm, finding the "lucky" one packed and ready to go - bouncing in the window.  I traveled pretty light for this one-nighter - an overnight bag with a pair of sweat pants and a t-shirt -- but these girls knew their overnight needs like a banker knows his money vault -- you *need* a lot of things to stay overnight at *Baby Ebowen's*" house -- a sleeping bag, pillow, dolly, doll carrier, little Bear, Bunny, blanket, night-time sippy cup, toothbrushes, boots, house slippers, snacks, lunch bags, nightgowns, 4 pair of undies "because you just might need them" they would say a little solemnly and confidentially; their Dad carried out some baggage to my car for this overnight stay.

We were on the job and it was a job they took very seriously.

They carefully watched every ounce of formula that baby drank.  They squeezed into the rocking chair with me and we would sing her songs and "read" her books.  We would make up stories about her and then tell them to her.  She would lay on the floor and they would lay down beside her touching her hand and talking to her.

We would line up some chairs and "take her to the zoo" -- we would have a "driver" that had to start and stop the car 53 times while getting there.  The buckling and unbuckling of the seat beats was the most cumbersome job of all - and they were pretend seatbelts.  But we would get to the "zoo" and then they would point out the lions to Baby-Bird, the giraffes and the bears.  Sometimes, the animals *escaped* and we had to run back to our vehicle and lock the doors to save Baby Evelyn.

But other times we would have a picnic on the living room floor pretending we were watching the elephants while we ate, and then mosey on back to our *vehicle*, do the 87 pretend-buckles again, and drive back home.

It was all so simple and yet so good.  I loved to snuggle and love on them and read to them and feed them and pretend and make up stories that we would tell over and over again.  And they all bonded and loved her and she loved them.

It was kissed by heaven somehow, those simple days.

*******

I would be lying to you if I didn't tell you that my own mortality has crossed my mind more than once. Or more than twice.  

And it burdens me to think about what it is I might leave behind.  It frightens me to think of standing before a holy God.  It frightens me with huge parts of my life that I see as undone. .....  

But one of the saddest that weighs heavy on my mind is that there are five wee ones that I have loved on hoping to enrich their lives with a holy relationship that only Grandparents can have with their little wee ones; and I want them to feel the love and joy and safety and warmth and wonder of being at Grandmum's and Popops house - and it grieves me to think that if this all ends poorly they would mostly not be old enough to remember .

I cry every time i hear their sweet little voices on the phone. It pains me to be so long apart from them.

It's those simple things that drive the deepest dagger into my soul.

Don't worry - I am not despondent - I am not hopeless - I am not depressed - yet - but I do grieve.

And today once again I will be missing the call from Addy-girl or Millie-bean asking me if I "remember that it's going to be be Baby-Evelyn-Friday tomorrow" with a tingling of excitement in their voice you don't hear too much this side of heaven.  And I will miss them telling me everything they have packed and ready to go.  I will miss seeing Baby-Bird's face light up when she sees who just came in the door.

I miss all of that.  And I do grieve the simple things - a heaven-kissed life.

bloodwork fail #2......

My blood work came back poorly again today -- so no chemo treatment. 

I was not caught off guard as much as the first time, because I have really felt pretty wretched and weak this past week, so that kind of told me that not only is Carbo a nasty, nasty thing to do to a soul, but that my blood was tanking a bit, too. 

But, having said I was a little prepared, I was still pretty devastated - and something else --- mad.  I was just plain mad. 

Heidi had come to spend the day with us, so she had a few ideas and the last one ended us up at the Vineyard Columbus having some ladies praying over all of us. 

That girl is pretty brilliant in times of crisis. 

I am thinking it has all come down to this - I am in God's hands.  There's no getting around the fact that I should not be missing treatments.  There's no getting around the fact that I have done everything and then some to make sure I was not exposing myself to anything that would stall this.  I have been eating everything they told me to eat and not eating any of their 3 pages of "cannots". 

I gave up coffee for crying out loud with barely a whimper.  (well I whined a lot, but I gave it up quickly so as not inhibit anything....) 

All that.  

And there is nothing to do but place myself in the hands of an Almighty God that I am struggling to work this all out with. 

I am looking for a treadmill - I do plan to get mad and fight a little here......

Hungry

I am up at 3:15 with a feeling that my brain has finally come back from the galaxy far, far and away - and it appears there might have been some salvageable parts after all.  

I feel a little weak, a little unsturdy, a little off balance, but I woke up an hour ago and felt something I haven't felt in one long week -- hungry! 

They press you during chemo to take your anti-nausea drugs to not only ward off nausea, but also the subsequent weight loss.  It appears if you can keep your weight up, you do much better.  Usually, I am quite a champion at this - "you need me to gain 2 pounds - why Bob,  I can double that and give you 4 EASILY".    

Now those two pounds that could cost me happy neutrophils sneak away unawares....

Thursday, Friday, Saturday, Sunday and Monday left me not even wanting to smell food, let alone eat it.  So it's kind of a "nice-force-feed" -- I know I need it, so I take in the calories I can, then leave the room, because the smells are overwhelming.  Scott and I counted up my calories on Saturday - the bloodiest battle day so far - and they worked out to be a little over 600.  and that was 589 more than I wanted to put past my chapped, sore lips. 

You receive a long acting anti-nausea injection when you get your IV chemo treatment and I can pretty much tell you the very minute that wears off 2 and a 1/2 days later - the windows fly open, my skin starts to smell different to me, and heaven help any food cooking at that moment - it's a done deal.  Ain't gonna get past these lips...... Your brain makes a "gag" connection if you will.  That's what all the fuss is about getting your anti-nausea meds into you - yes, it's to keep you eating now, but it is also to keep you eating in two months.  The medication breaks or buffers your brain from connecting the poison it knows is in your body and should expel, with the food you are eating - the food you are needing to eat.  If you do not take those meds, your brain will pretty much make a connection to every food item you have come in contact with while on chemo, and tell you it is bad - it whispers "don't eat it - they are trying to kill you".  And it will bring back the nausea feeling, and you cannot eat it. 

Your brain is just trying to protect you - like say it did with ancient man - "dude, that 10 day old carcass should just not be viewed as food."  As with any good warning to any good man, he was hungry, ate it and then he went off looking for a happy barfing ground for about three days - his body beating it over and over into his brain the connection; and we as mankind have benefited greatly from cave-man-food-trials-and-errors..... Otherwise, we would all have rotting carcasses lined up hanging from the garage rafters - it sure beats a 20 minute run to the local butcher shop.  

So you have to work hard to break that poison-brain-food-connection.  Or so my kind chemo nurses at the James hammered into my brain as they watched me drop two pounds a week for a bit. 

Which brings me to my original point - this morning at 3am, I woke up to a lost feeling and thought I should for once indulge it - I came downstairs, used my little $2 Ikea milk-frother thing whipping up some nice milk foam with a touch of sugar; then opened a can of peaches and mixed the two together. 

Heaven. 

I know there is great metaphor in all of this, but my brain even though back, is weary, and finds it difficult to state the obvious - if we willingly invite poison into our lives - then give our brains shut-off valves to allow this poison to do it's work ---- then what does that all mean?  There it stops thinking.  Because either the poison is good and we have to endure it until it does it's job to completion while almost killing us in the process; or the poison is bad, and we have to expel it and telling our brains it is something it is not can get tricky in a lot of areas of you life......

If I am taking this poison willingly to void me of all cancer, then I am back to the Passover idea.  And I am kind of stuck there anyways, so if I am needing a poison so extreme that it kills off a lot of other parts of me, and wreaks all kinds of havoc just to weed out the cancer cells that can and will take over my body; I guess if I am willing to do that physically to get rid of the black ugly stuff that my left arm has protected and allowed to grow for a while, distracting my brain cells other ways, I guess the question is this:  How willing am I to do the Feast of Unleavened Bread - an almost perfect picture to what is happening in my body -- how willing am I to try that on my soul and spirit? 

If it hurts this bad and has this many repurcussions and is taken this seriously by a team of doctors that I didn't even know their names 6 weeks ago - if it is that repugnant, that black, that evil, that life threatening to do all this to rid my body of those cells - those blobs of black that showed up on my ultrasound all through that lymph node chain - then how can I look at my own sin with any less fercocity and work to expel it from my body as well?? 

How can I?? 

Appliques

My brain is so toast. 

So today I have been contemplating things such as "leopard" - which according to the Home Shopping Network is something I need in a coat, a scarf, a hat, a rug, a chair, toilet paper - wallpaper even.....  I had no idea.  I don't usually watch the Home Shopping Network - heck I never even knew what they really did, but today, I have been informed. 

They also said something else I took note of - the whole 42 minutes that I watched them - that has troubled and perplexed me somewhat:  it appears this "is the year of the eyebrow"...... I could feel my sparse eyebrows whimper a little.  That's gonna hurt seeing all those luscious eyebrows on all those women, knowing if I have 6 left to count by the end of next week I will be doing well.

That thought led me to finally look at some information "they" hand out - "they" being your oncologist, your surgeon, your hospital, your nurses, your pharmacist, your boutique attached to the hospital, the nurses aids, the water boy - everyone has something to hand out to you. 

I know where all the Cancer Society money goes now - it goes to hand outs.  

This is just a "heads-up" to those walking through those doors later on:  It appears if you have cancer, one should take along a big tote with you, because you hear this a lot:  "here - take this".   You get a hand out about everything - except for the four things I had to call my doctor about today. 

After some searching, I found it -- believe it or not -- there is a hand out on "APPLIQUE EYEBROWS".......  I am sitting here pondering that.  What if they go on a little crooked?  What if they are a little low?  I mean really, how does it all work?  

One might have a little fun with this -- Star Trek comes to mind.  Or the wicked witch with the deep "V" in her brows, or you can have a perennial look of surprise - like some women look like after a face lift......

I've seen applique patches ironed on, but I doubt the same applies to one's forehead. 

So I am drumming my fingers, trying to beg my brain to de-fog a little, and wondering.  I mean, how does one know even what color to choose?? 

I.am.bamboozled. 

And then, I pull out the eyelash application information pamphlet which appears to be the " Eyebrow Applique's" evil twin when it comes to pamphlet pieces of literature..... wow. 

My brain just flew into a safe bay in a galaxy far away, waiting to de-log all this information overload.  I knew you could put on extra eyelashes, but it appears to be a bit trickier if you do not have a lot of lashes to begin with. 

A three-page-pamphlet when I can barely read my own address on a piece of paper?  Three pages when I have to line up my empty water bottles on the counter to make sure I am "intaking" enough each day?  

I'm guessing in my state of mind there is the *slightest* chance that the two could get mixed up.  It might be a long couple of months here folks. 

And we thought the chemo was tough......