Why it Matters

     The forum of Facebook is frustrating me today and I thought I might come here to this space to collect my thoughts and feelings.  This blog is in its own way my space, when you come here you come to my turf, my writing home and so it feels a little more safe than the arena of Facebook where writing any decent post or reply is almost impossible in the space provided.

     Yes, I’m going to write about Ferguson.

     Before you run off, at least consider my words.  Even if you disagree with my sentiments and opinions, maybe we can all come together and agree with the conclusion: we all need to do a better job of listening to each other.

     I made a post yesterday about not feeling like justice was done in Ferguson and the lack of peace there.  Where there is no justice, there is no peace, written as such: “No justice = no peace”.  And I would like to address people’s reaction to what I wrote and my own reaction to the situation in our country.

     Let’s just start with a few givens: I have never been a black and I do not know the experience of the black community.  But as a white woman here is what I do know: I have experiences that are similar enough to sympathize. 

     As a Catholic I experience the marginalization of other Christians who demonize Catholics.  I experience the mess of having to call myself a “Catholic Christian” as if they are entirely separate ideas.  I experience non-Catholic family members regularly saying hurtful things about my chosen church.  I experience people, especially other Christians, using every error, large or small, by any member of my church family as confirmation that “All Catholics are…”

     The experiences that provide the most insight, I think are the ones surrounding my gender.  I can choose who knows I am Catholic.  I can choose to leave my kiddos at home and not experience the abuse of every single person with which we come into contact commenting on my family and family size.  But I don’t leave my gender at home, lol.

     To me, the situation in Ferguson is like my recent trip to the emergence room.

     Josh and I were talking about the trip to the ER again last night as we prepare to drive down to the Mayo Clinic in Florida.  I, a white, female, married with children, Catholic Christian, with a large family, poor or of the very bottom of the middle class, with a chronic and possibly terminal illness, had a day where I did not feel well. Some of those identifiers I have chosen, some have been given to me.  Why include all of the self-identifiers?  Because they make a difference in the dynamics of social power and social power influences our experiences of the world.

     I had a day where I didn’t feel well; other people have days where they don’t feel well, I am not alone in this, and on the day I didn’t feel well I started to feel very, very badly.  So badly that I was afraid for my life.  After waiting for Josh to get a ride home from work, we dropped off 4 out of 5 kids at a family’s house and went to the ER.  I was taken back to a room reserved for people having heart issues.  And then it begins.

      I don’t know the experience of the black community, but I do know what it’s like to feel very vulnerable and to suddenly find myself surrounded by a room full of men.  I know what it’s like to feel like I am going to die and have the person in a position of power over me go very quickly from treating my symptoms to treating my gender.

      Let’s pretend it was my husband who went into the waiting room with my symptoms.  We are the same age exactly, race, socio-economic status, etc.  A white dad walks into the ER and tells the admitting people that he is dizzy and has had chest pains.  He is taken immediately to a room to be examined.  So far we have had the exact same experience.  But then his experience would be radically different.  When he gets to the back room he would be surrounded by other guys, other white guys, and when he says that he feels like he is going to pass out, has intermittent chest pain, stiffness of the neck, tingling in his hands and difficulty breathing he would be believed.  He would not have the doctor start to grill him, “You said your neck is stiff, you really have a lump in your throat.  You have a lump in your throat don’t you?” all while he feels completely awful until he just agrees because it is easier.  He would not have the doctor diagnose his chest pain, dizziness and other symptoms as hysteria.  Even if the doctors didn’t know why he was feeling that way they would tell him so and treat him with respect.

     If my husband was treated disrespectfully in the ER by the doctor it would be an isolated event.  If my husband was treated in a patronizing manner it would not be part of an overarching pattern.

When I go the oncologist’ office I know that I will be treated by a man.  I know that I will disrobe and a man that is not my husband will feel my remaining breast for lumps.  My only choice is in which male doctor I will see.  When I go to the cardiologist’ office it will be the same, except I will disrobe so that a tech can place electrodes on my chest.  If Josh has an emotional reaction at the doctor’s office to his wife’s health he is seen as being a compassionate husband, commended, and comforted.  If I have an emotional reaction to having had cancer or being diagnosed with heart failure I am patronized, seen as being fatalistic or depressed or anxious and nothing that comes out of my mouth regarding my symptoms or experience will be taken seriously.  In fact, even if I am not emotional but any of my symptoms could be attributed to anxiety or depression then they will be so.

     And this hurts, is frustrating and pisses me off.

     Do I think the ER doc should be censured? No.  Fired? No.  Am I grateful for the services of doctors in my life? You betcha!  But I do think that doctor needs a few places in his life where he in a position of vulnerability and some thorough training on the experiences of women in his care.  I am guessing he left our interaction with another confirmation of his stereotype that women overreact.  Did I fire both the cardiologist and oncologist that treated me the same way?  Yep!  I know other women do have great experiences with doctors that they love and trust.  I do not think that all male doctors are bad people or bad doctors.  But, I can say that these are not isolated incidences.  I can say that I will be treated this way more than a few times the rest of my life.  I can say I feel afraid of going to Mayo and meeting yet another male doctor(s) and being treated poorly.  I can say it takes me a long time to trust doctors even though they are the very people who are supposed to keep me safe.

     And that’s sad.

     And the situation in Ferguson hurts me.  Not because the police were wrong, and Mike Brown was right, but because it happened at all.  Because the black community experienced another place where they feel powerless.  Because hurt people get angry.  Because instead of compassion for Mike Brown who clearly messed up, and compassion for the officer who was just trying to do his job and, right or wrong, killed a man, and compassion for the parents, and compassion for the black community who feel wronged, people are continuing to hurt each other.

     What would the world be like if we would listen to each others hurts instead of reacting defensively?  What if I put down my, “But I didn’t mean to!” and asked my husband questions when he tells me I’m wrong?  What if I closed my mouth when talking to my black neighbor after asking her experience?  What if the person who reported my husband for repeatedly leaving the office early asked him why, instead of assuming he is a lazy jerk trying to cheat his company?  What if, when he fell asleep at his desk that once, instead of starting an official investigation, someone asked my husband how he was doing?  What if we did the hard work of listening?  Not because the other is right and we are wrong, but because they are a person? 

     And don’t tell me that the looting going on justifies your stereotype.  Even if I was a total idiot I should still have been taken seriously when I went to the ER.  And, seriously? I have some members of my family that, shall we just say, react poorly in certain situations?  So how ‘bout we listen and wait to pass judgment?  How ‘bout we remember our errors before we recite our list of others?

     I am a white, female, married with children, Catholic Christian, of lower socio-economic status with a large family and health issues.  I am also occasionally quick tempered and have double standards and have been known to say completely stupid things that I later regret.  I can be quick to take offense and slow to forgive.  And I want to be loved and treated kindly even if I am being a brat (thank you, Josh!).  I want people to listen when I am hurting.  I want people to be outraged on my behalf if I am mistreated, even if my perception of the situation is wrong.  I want to be loved.

     So I am mad with the black community, and mourn with them.  I feel sorry for the officer who found himself in a horrible situation, who will now be known for the rest of his life by an hour’s worth of decisions on a single day.  I feel awful that a young man lost his life for the same.  And I commit myself, again, to ask if there might be a power dynamic involved and to listen rather than speak if I am the one with power even if I don’t feel powerful.  Because Ferguson reminds me of my trip to the ER, and I don’t want anyone to feel like that.

Life After Cancer: Eating Like a Hobbit

     Apparently I am Hobbit.

     While not exactly what one could call short, you might have noticed my hobbit-like tendencies earlier before it became official.  I have lived most of my life in the mid-Willamette valley of western Oregon with only a brief (8 years, but who’s counting?) journey to the Misty Mountains of Alaska,  and I currently live in Greenville so you might think I would have noticed myself, but no.

      I’ve had another week with a ton of medical appointments.  First was my appointment with our new cardiologist on Monday.  Since the survivorship oncologist caught my heart failure from my symptoms in mid-October, I’ve had 2-3 doctor’s appointments every week.  With Matthew being so little and still nursing and no family near to abuse for baby-sitting, we’ve been trying to schedule all these appointments in the morning so Josh can come with me and watch Matthew and still have most of the day to head back into work.

     Some times that works perfectly, we get in and out before 10 and Josh doesn’t have to stay too late at the office or work Saturday to make up the time.  This week has been a total failure of that previously successful system, at least in terms of Josh getting to work on time.  On Monday we were hours behind our projection because the cardiologist was wonderful and spent so much time with us talking about heart failure.  Wednesday I had an appointment for a CT scan of my heart.  This was to make sure the chest pain I have been having is not the result of the chemo or radiation I had for breast cancer treatment frying my coronary arteries.  Fried coronary arteries is bad.  Just in case that wasn’t completely obvious.  We still have not received the results of that test and are going on the no news is good news.  In the mean time we weren’t prepared for the “you can’t nurse for 4 hours after a CT with contrast” and after we left the hospital had to run to the store for bottles and formula and Josh didn’t get to work until after lunch.  Again.

     Today we had, drum roll… another heart test.  This test was like one of those Facebook polls: answer these questions to see which book character you are most like.  Apparently the doctors earlier were leaning toward Mrs. Bennett from Pride and Prejudice but just in case, they wanted to run another test.

     The test is run in the hospital in the same area other heart procedures are run.  You come in and after verifying your name and birthday more than 100 times they take you back to a room that is like the triage area of the ER.  There was heart monitoring equipment and a bed and a surprisingly comfortable chair.  First they get an IV going.  Today I had Nurse Joy, for all you Pokemon fans.  Then they strap you to the bed and the fun begins.

     So here’s the test part: it’s called a Tilt Test and after you are strapped to a special hospital bed and hooked up to this machine that monitors everything and they take your blood pressure like a million times, the nurse tilts the bed up so that you are essentially standing up on the footboard of the bed.   And then the staff wait to see if your heart stops.

     Seriously!  This is a bonafide medical test: 10 minutes of lying flat to ascertain resting pulse and blood pressure and then about 15 minutes of standing up.

     And, it turns out that I’m not Mrs. Bennett after all.

     I’m a Hobbit.

     Because, after only a few minutes of being upright, my blood pressure of 95/50 starts to climb and my resting pulse of 50-60 does as well.  After about 15 minutes of standing my blood pressure hits 130/70 and my pulse has rocketed to 150 beats per minute.  Just from standing.  At this point I am having difficulty breathing and am dizzy and then a little medication to mimic my beta blocker and, WHAM!!  My pulse and blood pressure start to fluctuate and at that point they discontinued the test to lay me down with my feet elevated because I was going to throw up and pass out at the same time, and my blood pressure was dropping past 70/40.  I end up laying with my feet elevated for 15 minutes with a raging head ache, nausea and a slowly recovering heart.

      NOT a Mrs. Bennett, drama queen, quick I need a fainting couch and a white handkerchief to wave, “no one knows what I suffer with MY nerves” kinda woman.

     After a few minutes of head down, feet elevated, my pulse and blood pressure start to even out again.  Nurse Joy calls the cardiologist to interpret the findings which is “neurocardiogenic syncope”, just a fancy way of saying I pass out when my head and my heart stop talking to one another, and for me this is entirely position related.  (Josh thinks this is all very funny and says he always knew that I was messed in the head!)

     We aren’t quite sure what this will mean with my congestive heart failure.  Neurocardiogentic syncope, also sometimes called vasovagal syncope, is a very generic term for the most common cause of fainting.  You stand up too fast and pass out, or pass out at the sight of blood, and they will call it one of those two terms.  Typically this type of poor regulation of blood pressure is not a big deal.  The doctors would tell you to eat more salt and drink more and to be careful not to stand up too fast.

      When I ended up in the emergency room 2 weeks ago I wasn’t dizzy from standing up too fast, and after laying down my symptoms were worse.  Nurse Joy said that what happened on the Tilt Test was a sort of forced version of what probably happened that afternoon.  My pulse was elevated as I took all five kiddos on a field trip to the Greenville Animal Shelter.  We finished by walking up the hill to our truck, me lugging Matthew and a diaper bag and arguing with a child who was mad we weren’t staying longer.  Everyone gets strapped in, I sat down and started to drive home and my heart, which has been damaged, and weakened by the damage, can’t handle the stress and started to shut down.  I got a head ache while we are driving, a really weird and wrong kind of head ache and the first twinges of “I think I might pass out.”

     We got home.  After sitting in one position for 25 minutes I got out of the car and started unloading 5 kids and 5 kids worth of field trip stuff.  I started to feel really bad at this point and decided to go lay down to nurse Matthew and rest; I walked up a flight of stairs to our bedroom and lay down.  Game over.  My heart can’t cope.

     So, yeah, what exactly does the doctor tell me to do for this?  My prescription: eat like a hobbit.

Seriously!  He’s like, you need to start eating at least 5 meals a day and no salt but try to drink lots of water, but drinking water can be really bad for your heart so try to space it all out through the day and then we will see from there.

     By my reckoning that means I need to eat breakfast, second-breakfast, lunch, snack, dinner and dessert.  In other words, eat like a hobbit.  Josh thinks I’m wrong and it’s really dinner and supper, but I told him I am sure I the doctor really meant I have to have dessert.  For my health.

    

     So now we wait.  I will start taking my beta blocker at night instead of in the morning and see if that helps.  November 30 I will take my first sojourn to Florida, to the Jacksonville area Mayo Clinic, to see if they can shed light on this whole deal and in the mean time I embrace my hobbit-like status. 

Sinking In

     It rained yesterday from just after I got out of bed with Matthew, having given up my desire for five more minutes of horizontal, until lunch time.  The sky here in South Carolina lets go in these bursts as if the sky is assaulting the ground; not at all like the endless mists and drizzle of Oregon to which I'm more accustomed.  Here it rains so hard the rain bounces off the earth, nothing about it gentle, amassing in our driveway and in puddles as the lawn is unable to cope the the sheer quantity of falling water.
     I watch it run down the sloping curve of our road, pulling in leaves and dirt it has pounded loose.  The water cannot sink in fast enough.  The lawn is overwhelmed.
     I think that's how I've been feeling since October 24th.  Heart failure.  It has exploded into our life, a sudden storm, and I don't know how to take it in.  I remember back to the long months after I was diagnosed with breast cancer and how even in the midst of chemo when I was aching and bald I would still wake in the morning and with shock be reminded, "I have cancer."  How it would wound me every time, even months later.  A cancer diagnosis is just too big to take in one gulp.  The puddles collect on the surface waiting for entry but it just doesn't stop raining long enough to take in.
     Little things make heart failure real.  Even though I looked up the results of my echo-cardiogram right after I had it; even though I knew by any definition I had heart failure; even after my oncologist referred me to the cardiologist; even on the day of my appointment it didn't seem real.  Maybe I would walk into my appointment and the cardiologist would send us away laughing.  Maybe when he came in he would say, "You were just dehydrated and it threw everything off."  Maybe he would order another echo-cardiogram and that one would show nothing wrong with me.  Maybe.
     And those words, how they wound.  Heart failure.  Failure.  My heart is failing.  It's too big for me to take in.  Heart medication and ejection fraction and EKG and prognosis and, just, failure.
     Somehow the bacteria that was meant to cure me is killing my heart.
     Daily the little things sting and make it real.  The shortness of breath when I climb the stairs, those two little pills in the morning and again at night.  More doctors visits, the words repeating over and over until they are no longer so foreign.  Heart.  Failure.  Heart failure.
     We are in the process of changing cardiologists to one who understands that, in part, he is a conduit of the storm raining down on us.  Josh and I really like him.  We met yesterday and our liking of him began looking out into the rain from his office.  The staff were so nice, much warmer than the other office staff.  We asked Dr. Vaz's nurse how long we had with him.  She laughed softly and replied, "As long as you need."  He stayed with us 45 minutes.  45 minutes!  45 minutes of explaining and questions and soaking it all in.  Turns out we actually attend church together but we are so new to town that we don't recognized everyone yet.
     He confirmed some of what we were starting to learn.  The damage is irreversible.  Permanent.  Heart failure.  The chemo that saved me from cancer is the culprit.  While buying me time from a horrible cancer death, I would not likely still be alive today without it, that same chemo is now slowly killing me.  My heart failure will likely progress.  At best the medicines I am currently taking are holding it at bay.  Because most heart failure patients are much, much older there are no studies looking beyond 2 or 4 years survival.
     So we don't know much.  Crazy huh?  How much we don't know, can't control about life.  The rain will fall or not, the wind will blow or not, and I, Stephanie Sanders, I say this gently, am not God.  I don't get control over the wind and rain, and I must relinquish the timing of my death.  I can't be in control.  On my own I fail, I flounder in the storm, under the pounding weight of it all.
     Any one who thinks peace is a simple easy affair has never really struggled, had their whole life thrown into the fire again and again, burning away illusion and challenging peace.  "Peace is something intimately associated with war.  Peace is the result of victory.  Peace demands of me a constant struggle.  Without that struggle, I'll never be able to have peace...War is the greatest obstacle to the easy way.  But in the end we have to love it, as the religious should love his disciplines."  wrote St. JoseMaria Escriva in The Way.
     Dr. Vaz talked about learning to do with less or without salt.  And it struck me.  Another wound.  I don't have edema.  I don't have high blood pressure.  Yet.  Why?  Argh, it's stupid and selfish, but really, no salt?  Really?  It will tax my heart?  But isn't medication and chest pain and shortness of breath and tests and appointments and looking at my children and realizing that I might not be here tomorrow to share in their laughter, in their special moments, isn't not getting to grow old with Josh enough?  This tiny straw of salt makes it real in a way it wasn't before and I mourn.
     I have another heart test tomorrow and again on Friday.  More opportunities to soak it in.  I am not immortal.  I cannot control my number of days.  More opportunities to go to war with the selfish side of my self, more opportunities to battle for peace and battle for letting God hold my life in the palm of His hand.
      "She is clothed in strength and dignity, and she laughs at the future."

Matters of the Heart

As some, but not all of you, may know, I was diagnosed with a low-grade congestive heart failure in October due to damage done by chemo.  This was a known possible side effect and the particular drug that likely caused this was considered necessary to preserve my life.  And, we are completely grateful to this day to God both for my life and for modern-day health care that provided me a years I may not have had give treatment options 50 years ago.  I am currently on a beta-blocker and we were still in the process of figuring out things when life got more weird.  Than normal.  Because I am so normal.

The short update is: I'm ok and we are going in for more tests this week.

The long answer: Have you ever looked through someone's prescription glasses that are too strong for you?  And then your eyes kinda feel funny and if you kept them on then your head would feel wrong?  As the kids and I were driving back from a home schooling field trip Friday afternoon I kept thinking, I really need to get more contacts because the sun is to bright and squinting is making my eyes feel funny.  About 3 miles from home I developed a really weird kind of headache.  I mean really weird as in I have never felt anything like it before and don't even know really how to describe it other than I knew that I might pass out while driving.

I started praying like crazy.  Got home, had the kids help me bring things into the house and then sent them all outside to play while I went upstairs to put Matthew down.  Two days before, on Wednesday night I had chest pains but didn't think it was at all serious, probably just the anxiety of being diagnosed with heart failure on Oct 24th and trying to find out how we were going to treat it.  On Friday afternoon as I climbed the stairs with Matthew I went from feeling weird and different and off to feeling wrong.  Deep down, something is REALLY wrong with me wrong.

The dilemma was what to do about it.  We have one vehicle and I had the truck after dropping Josh off at work and Josh's boss had been frustrated with him for taking time off for all my appointments to get dx with heart failure to begin with.  I lay down with Matthew and nursed him for a few minutes and then was like, "OK.  I either need to call Josh or call 911."  I called Josh at work and asked him to try and find a ride home asap.  He asked me to take my pulse rate, was my heart racing?  Yeah, nope.  I count was 22 beats in 30 seconds and now I was actively trying not to pass out.  Thankfully after a couple of phone calls I got a hold of another home schooling mom and she (praise God) bailed on her afternoon plans to go home so we could bring her the kids.  4 kids.  Just before dinner.  Got to love God-friends!

We made it into the ER around 4:45pm, waited for the receptionist window to open up and said, "chest pain" and they took me right away :).  I was really out of it: freezing cold and shaking, my blood pressure was 195/70 but my pulse was not racing.  I got hooked up to the heart monitors and they tested my blood for heart attack and then the answers from the docs got a little weird.  They told us that I was having a panic attack, that my neck muscles were tight and constricting my airway/heart rate and that after a few more tests we could go home.  If I am being charitable, which I don't feel at the moment, then the old fashion male protectiveness of the fragile female came into play and they didn't want me to worry.  They saw a 36 yr old mom with a baby with her.  Better to dx me with hysteria than to treat me like a rational thinking being capable of NOT FREAKING OUT EXCESSIVELY over stressful news :).

A couple of more tests and we were let out after 9:30pm with a prescription for heart burn of all things, and told to call the cardiologist on Monday.  My discharge papers read: atypical chest pain and globus hystericus.  I thought, and I think was told, that it was all in my head/psychosomatic illness.  We didn't get home from picking up the kids at Robyn's till late and slept in on Sat.

By mid Sat afternoon, I was like, really?  Did I really create all that? I still felt like crap.  Then I remembered that on my discharge papers there is an access code to go to the online portal for chart information.  I'm kinda mad right now.  Yes, my heart enzymes were not elevated and my chest x-ray was normal, but BOTH of my EKGs were abnormal with lots of exclamation points and medical jargon that when I look up the definition means that I AM NOT OUT OF MY MIND thankyouverymuch!  For those of you in the medical profession or who like to look stuff up, I had: "sinus bradycardia"; "T wave abnormality-inverted T waves, consider inferolateral ischemia"; "prolonged QT"; "non-specific T wave abnormality".  And I am, apparently, not pregnant :).

Josh and I knew that with a congestive heart failure dx, even a mild case, we might be in for a ride, and I guess that ride started a bit earlier than we were expecting!  I'm guessing from looking stuff up that there will be lots of opportunities for my new homeschooling mom-friends to watch my kids:).  If my reading of things is correct then I am at a really high risk of "cardiac events" like I just had where I get dizzy, pass out, have seizures, or have a heart attack because my heart is not regulating it's beat very well.  The top of my heart is not "talking" to the bottom.

I'll try to let you all know what is happening.  Please pray for Josh as he tells his boss today what is going on and that he needs more time off this week for appointments.  Please pray for peace for us both as this is so stressful and scary.  Please pray for us to find/get into a GOOD cardiologist, I was not happy with the one we saw last time.  Please pray for us as we consider ways to talk about my condition with the kids.  We have an apt with our "old" cardiologist tomorrow and with the Mayo Clinic in Jacksonville, FL Dec 1st.

Love you guys and thanks ahead of time for the prayers,

A Season of Miracles

By Stephanie Sanders — Dec 7, 2013 11:31am

I've been doing really well, honest.  It's just been crazy this past couple of months.  Have you ever been in a time like that?  Full of craziness and miracles?

It all started with Josh job schedule getting nuts.  See, we have always known that this current job is for the duration of building the bridges they have been working on, and the completion of the project was supposed to be end of 2014.  Then this summer they decided if they pushed, they could finish early and the end date became summer 2014, then the spring and Josh was working crazy hours.
I visited my Oncologist (cancer doctor) in August for a check up, six months since my crazy brain scan that turned out to be an inner ear issue and scared us so much. I have been feeling great and full of energy, so it was a good appointment, but ended on a funny note: a conversation about my fertility.
Josh and I always wanted a HUGE family, and no, four kiddos is not big to us.  We're talking Duggar family big, Cheaper By the Dozen big, we don't fit in a mini-van any more big.  And well, four kids, just isn't that big in our minds. 

Enter cancer and our entire family plan went out the window.  The kind of chemotherapy I had destroys fertility for the majority of patients 30-45.  I missed my periods for 1 year and technically entered menopause just after my 34th birthday when all of a sudden my fertility returned. I am now 35 but from the chemo is it more like my body is about to turn 46 instead of 36.  So, the chances of our getting pregnant are minute even if we were trying, but my doctor wanted to cover the grounds of "Why getting pregnant is a BAD idea!" See all the pregnancy hormones would only go to one breast instead of two and since we have no idea why I got breast cancer.

Fine, no trying to get pregnant for us.  But, really, it's not like we could really get pregnant anyway so if Josh's schedule is crazy and we aren't that careful it isn't a big deal.  Yeah.

Three weeks into September I had to call back Doctor Cho and talk about a positive pregnancy test.  Which although he was not very happy with me is kinda a miracle huh? 

The hardest thing for me about our cancer diagnosis has always been missing Katie's first year.  I wasn't the one holding her and loving her, I don't remember when she walked and no one wrote it down, and there are almost no pictures.  Getting pregnant again was has felt a little like redemption. 
Meeting with an obstetrician at 6 weeks gestation was an eye opener.  I think "termination of pregnancy was mentioned at least 5 times".  My risk of miscarriage was high, my risk of heart failure from the stress of pregnancy is high from the chemo damage, my risk of re-occurrence or getting a new breast cancer is higher from the pregnancy and on and on.  Doesn't make me want the baby any less, thank you very much, but it was eye opening how much pressure there was to consider an abortion.

And, I did hemorrhage November 1st.

No, this wasn't a little bleeding episode: "sub-corionic hemorrhage" for me was 1/2 to a pint of blood inside 5 minutes.  If miracle #1 was getting pregnant in the first place, miracle #2 was going to the emergency room and the baby still having a heart beat.  Miracle #3 was not loosing the baby over that next week.

I bleed for 3 weeks total and was put on "light duty" by the OB-fetal specialist we went to see at 12 weeks gestation.  Miracle #4 seeing my baby for the first time and watching it jump and turn inside even though I couldn't even feel him/her moving yet.

December 6th was my 2 year anniversary from my last treatment, the day doctors count as the marker for risk assessment.  The type of breast cancer I had combined with my age put me at a 1 in 3 to 1 in 2 risk of having my cancer come back terminally in the first 5 years after treatment, but the 2 year mark is really the golden number, it's when the risk of re-occurrence stops climbing and starts to fall finally.  Every visit to the oncologist is marked by talking about living to that magic date, "when you get to 2 years out", "if you can make it to 2 years..."

Miracle #5: December 6th, 2013; 15 weeks pregnant and cancer free.  I am grateful on so many levels.  Every other week I meet with other young women cancer survivors and am painfully aware of how many wonderful young women are facing their two year cancerversary already having their cancer return.

So, I thought this weekend would be a great time to say, "We are having a BABY!" and, "Woot! Woot!  Still cancer-free!" 

What a season of miracles!  And, the great part is that we get to look forward to so many more.  This is also the season of Advent, waiting for the celebration of Jesus' birth at Christmas, and as our family waits for the Christ Child, we are also eagerly awaiting news of a new job.  Josh's last day got bumped up again to December 20th and we look forward to seeing how are prayers are answered for a new job.  We are also awaiting the news December 30th, not only of the gender of our new baby, but of the blood clot in my uterus having broken up and the placenta having moved to a better position (it was laying completely on top of my cervix).

But, even if we celebrate Christmas unemployed, we still get to celebrate; and even if the placenta is still in a dangerous position, both I and the baby are here to be put on bed rest, so, Hallelujah!!  What a miracle.

Gratitude for Saturday

By Stephanie Sanders — Apr 7, 2013 10:54pm

This is my gratitude list for yesterday, Saturday, April 6th.  I’ll post my thanks for today, after I finish
typing the list.  Probably will end up being tomorrow.

21.  I woke up this morning and didn’t have cancer.
22.  I woke up to my husband sitting on the edge of the bed and rubbing my back with one hand.
23.  I didn’t feel exhausted when I woke up.
24.  I got ready this morning knowing that I got to go to morning Mass; what a privilege, to be able to go to church practically whenever I want.
25.  The soft, black corduroy shirt that Josh’s aunt and uncle gave to him.
26.  My favorite jeans from Goodwill.
27.  Coffee: it’s smell and taste when I get up, how it just feels like morning, and good things when I hold a hot mug.
28.  My husband for making my coffee almost every day.

A lot of people have gripes and such about how our pastor isn’t Jesus Christ come down in the flesh but you know?

29.  We have a pastor.
30.  We have a great Priest, who loves us, prays for us, and…
31.  Brings us Jesus every time we come together at Mass.
32.  Kate fussed for most of Mass and I got to practice what I preach: loving even when it’s hard and living an unselfish life.

33.  Father Peter anointed me with the Oil of the Sick after Mass and said a special prayer for my healing while I was surrounded by Josh and the kids.
34.  We own a car that still runs.
35.  We have been blessed with four kids.
36.  Food in the fridge.
37.  I have arms to hold my husband and he holds me back.
38.  After almost 10 years of marriage, I am still in love.
39.  My husband for entertaining the kids while I write.
40.  I have a computer, and paper for a journal.
41.  I have a bible in my own language.
42.  We don’t have to share our house with another family.
43.  Our house has a wood floor instead of a dirt floor.
44.  Whenever I need to do laundry, I walk into our pantry instead of the ¼ mile down to the river.
45.  Running water in. my. house.
46.  I actually have a plan of what I am going to make for dinner.
47.  I have enough to feed my family when so many in the world will go hungry.
48.  Napping with a snuggly toddler.
49.  The way Kate’s face looks when she is sleeping.

Today is the two year anniversary of my mastectomy.  
Because of cancer:
50.  I have learned how to deal with anxiety through stubborn (perseverant) prayer.
51.  I am so much more compassionate to others who suffer now.
52.  I am so much quicker to pray and to say thank you.
53.  I am able to receive help more easily.
54.  I let my house get dirty and focus on loving my family when I’m tired.
55.  I have been able to see Josh grow so tremendously as a person.
56.  I have had a lot of time to read, which I love to do.
57.  I have learned how to unite my suffering to the Cross of Christ, and I don’t mean this in some cheesy way.  Suffering sucks, but I have learned how I can transform it by giving it to Jesus, or uniting it to his suffering.
58.  I have met some amazing young women who have also had a cancer diagnosis.
59.  Although I had a dinner plan, Josh cooked.
60.  Kids all tucked in bed for the night.

Gratitude

By Stephanie Sanders — Apr 6, 2013 2:43pm

I don’t know how many of the people who read my blogs are Christians, especially since I talk about God so much, and, well, I’m going to do it again; but I hope in my writing about God you get a sense of how real God is to me and how close we are and how close you could be to him.  I didn’t start out that way, I wasn’t born into a Christian family, and I remember what my life was like without God in it.  That’s one of the reasons I talk about God so much, I remember how hungry I was for some meaning, something lasting to take hold of me.

In the Bible, if you read the Gospels, the books Matthew, Mark, Luke and John, you can discover a little secret to having a miracle transform your life.  It’s not that the secret is not profound, it’s just simple; it’s not small change, but revolutionary.  If you look, and look closely, you will discover that before miracles, especially miracles of transformation, Jesus gives thanks. 
That’s it.  The secret is gratitude.  Thanksgiving.
And then, miracles happen.  

Five loaves and two fish feed thousands, a man is raised from the dead, and the Eucharist, the big THANKSGIVING of Jesus’ giving his body and blood.  From the first letter to the Corinthians, chapter 11, “23For I received from the Lord what I also handed on to you, that the Lord Jesus, on the night he was handed over, took bread, 24and, after he had given thanks, broke it and said, ‘This is my body that is for you.  Do this in remembrance of me.  25In the same way also the cup, after supper, saying, ‘This cup is the new covenant in my blood.  Do this, as often as you drink it, in
remembrance of me.’”

Just before I was diagnosed, before I even found the lump, I felt God was leading me to memorize these verses from the letter of Saint Paul to the Philippians, chapter 4, “4Rejoice in the Lord always.  I say it again: rejoice!”  And then the recipe: “5Your kindness should be known to all.  The Lord is near.  6Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God.”  The promise: “7Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”
After treatment my spiritual director asked me to memorize and meditate on 1 Thessalonians 5:16-19, “16Rejoice always.  17Pray without ceasing.  18In every circumstance give thanks, for this is the will of God for you in Christ Jesus.  19Do not quench the Spirit.”
I had always read that part as sort of a laundry list, not a recipe for joy, but it is.  And, in the inverse is true, when we don’t give thanks we actually shut out miracles and the divine from our lives.  We quench, extinguish the Spirit of God from transforming our lives.

So, I have challenged myself as a matter of course to be grateful in all circumstances, for all circumstances.  To look, to hunt, for the moments of the divine in my ordinary life, in my ordinary doings so that they can be transformed into something extraordinary.


What I was thankful for yesterday, April 5th:
1.      My mom was able to watch my kids while I had my MRI.
2.      The morning passed quickly filled with good things with the kids: schooling, a puzzle, coloring; all the mom things: laundry and dishes and cooking.3.      I had frozen some soup last month when there was extra that I could pull out for dinner for the kids4.      A friend gave me a ride and we had a great talk together.5.      Josh was able to get off from work to be with me.6.      A kind attendant to bring me back to the MRI area.I had been frustrated in the past with my two breast MRIs, the techs would ask if I wanted to listen to music during the scan but couldn’t get in the local Christian radio station and the machine was so loud that I couldn’t hear anything but the noises anyway.  Josh and I had talked about this in the waiting room before they took me back to get changed, about how much I wished that I could be hearing songs about God while I was in the machine.  During radiation while on the table I would pray, especially the Divine Mercy prayers, but MRIs are so much longer that it’s hard to lie still in an uncomfortable position and still pray, especially when you don’t feel well. 7.      The tech was this young guy, same story, they don’t get in 107.9 but then he said, “Hey, is that the Christian radio station?”  I remarked, yes, and then he pulled out his I-pad.  He was tech savvy enough to get the music streamed into my headphones and young enough to know I wouldn’t mind
a little hearing loss in order to hear the music.  I got to hear songs about God through the whole procedure.
8.      Even when the machine got really loud and would drown out the song, I would sing it to myself and just when I couldn’t remember the lyrics the machine would quiet down just enough for me to hear.
9.      Answered prayer that even though the tech was skeptical that the images would turn out with my braces, after changing the position of the scan, all the images were perfect, perfectly clear.
10.  After I came out and had changed, Josh showed me how a friend had blessed us.  They knew that these things take a long time, and then you’re waiting around for the results, so they blessed us with some money to buy dinner out. 11.  I was with Josh when the doctor called.
12.  NO NEW CANCER!
13.  Hope that the solution to my headaches and vertigo will be simple. 14.  My mom for watching our kids.
15.  Friends to call and text with the good news. 16.  People who prayed for us.
17.   My kids didn’t fight going to bed when I was so exhausted.
18.  StarCraft Expansion Set
19.  Our bed, a wedding gift from my grandmother, still so comfortable almost 10 years later
20.  Melatonin to help me fall asleep

I’m already writing on my list for today, counting my blessings.  It changes you to do it, to look at life like that.  I have a headache and am dizzy, but I am so grateful.  Why? ‘Cause it’s not terminal.

NOT cancer!!

By Stephanie Sanders — Apr 5, 2013 7:10pm

Hallelujah, it’s NOT cancer!!!!  My official diagnosis is: Benign Paroxysmal Positional Vertigo (BPPV).  What the heck is that? (I didn’t know either)

It means they think that part of my inner ear is off, the part that helps tell the body what is balanced, and so when upright, my body thinks it’s falling, causing my dizziness and headache. 

http://en.wikipedia.org/wiki/BPPV

Those little circles in the picture get stuck down in the posterior canal or in the cochlea and aren’t floating like they should be.  It could go away on its own or with a couple of sessions of physical therapy to move them back into their proper space.  I meet with my oncologist on Wednesday to see if my symptoms are better and to talk about my hip.  I might be able to do physical therapy to deal with both.

The most common form of breast cancer loves to return in bones, but I actually had a less common form; my type is much more common among young women but less common in the general populous of breast cancer patients.  The kind that I had is much more likely to come back in the brain than in the bones so it’s such a relief that it hasn’t!!  And, that means it’s even more likely that my hip pain is a side effect of chemo than a side effect of cancer having returned.  It’s very common for young cancer patients to develop swelling in the joints, called bursitis.  When we meet with my onc. on Wednesday we’ll talk about a decision matrix for my hip pain.  Even if it is breast cancer in my bones, it would be waaaaayyy slower growing than breast cancer in the brain so it’s not as emergent to get a scan to rule out cancer as the cause of my pain and expose my poor body to more radiation.

Thanks everyone for waiting with me and praying for me.  I am so grateful for your support.  Please pray for my continued recovery.  Feeling like you’re going to pass out with an almost constant headache sucks and I look forward to feeling better!  Trumps my hip pain any day.  I’m also grateful for the constant reminders in my life not to take a single day for granted.  Pain or no pain, I have a choice to face my day with thankfulness and gratitude for my many blessings.  So many of my “problems” are first world problems: when Josh’s job ends will we need to move?;  “only” having one bathroom for six people; owning a vehicle with high millage; how to pay for some of the best medical care in the world.  Aren’t we blessed?

I’m going to spend my weekend looking for blessings in every moment.  Can you find a hundred by
Monday?  I think it won’t be that hard for me to.

In the waiting room

By Stephanie Sanders — Apr 4, 2013 8:18pm

Is it weird that it’s been a good day?  It’s been raining like crazy here and on my way home from the oncologist, after a few minutes on the road, the sun broke through the clouds.   I could still see the rain in the distance wetting the West mountains but I-5 was clear as far as I could see.  The clouds had all these beautiful, multiple layers to them and the small sunny patches were that vibrant blue that speaks of summer when it’s only just spring.

The kids had been sick at my last post, the one about needing to head to the oncologist because my hip has been acting up more lately. Even if my hip was a benign something, most likely it has been caused by the chemo, bursitis is really common amongst former patients.   At the time I wrote I didn’t feel very well, a sore throat and a headache, dizzy and just generally feeling crummy.  Well, it hasn’t really let up and is in fact worse.

The good news is that at this point my oncologist is not very concerned about my hip because he is so very concerned about my brain. 

I have a brain MRI scheduled for tomorrow at 1:45pm and will hit the table about 2.  They’ll rush the reading because it’s not for some torn cartilage and we should know if my symptoms are from my cancer having had returned in my brain by 6 or 7pm.  Rush reading because I failed Dr. Cho’s nice walk in a straight line test (yes I actually still drove home, scary huh?) and other vertigo tests that
reveal my left eye/side is not processing very well.  Still could be a virus or the rocks having fallen out of my inner ear or some random thing we haven’t discovered yet.

Is it weird that it’s still been a good day?  It’s had its moments of hilarity, even in the oncologist’s office.  Josh and I were waiting my the nurse’s station while they called to get a rush MRI, to see if
they could even get me in tonight, and there was this great discussion about MRIs to the head and braces.  If you weren’t aware, I had braces put on in December; my teeth were straight but are now
fragile from the chemo.  I’ve been breaking some of my front teeth, my teeth are really close together and there is just no room for the Dentist to get in there and fix them.  It’s actually less expensive to get some more space with braces then to cap four teeth. So, in Magnetic Resonance Imaging, what happens to braces? (They will just make it harder for the radiologist to read my images.)  We had a great time laughing about braces pinging off the ceiling of the room or my head being stuck to the inside of the machine.

I love my kids.  Joy was singing, “I’m so hungry,” in the kitchen over and over after we got home and every time I would lean into Josh’s arms Kate would ask for “squishy hugs”.  They are in the back now laughing hilariously at something Kate is saying and tickling each other as they “make beds” and are really throwing blankets on the floor.  I got to see my sister, sold some things we are using in the garage for $75, and folded laundry.

In cancer circles, we call this time, “being in the waiting room.”  There’s not much you can do to
hurry things up, nothing changes for being worried so… you just practice waiting.

Tomorrow I will wake up and the first not muddled thought I will choose to think will be, “This is the day that the Lord has made, let us rejoice and be glad in it.”  Join me?