Thursday, January 26, 2012

Expensive Urine

A couple of days ago, when Harrison was first admitted to the cancer ward,  I brought along several bags--clothes, electronics, etc.  One of those bags contained several bottles of nutritional supplements that have been recommended to help mitigate the whole chemo process, along with a list explaining the dosages and reasons he should take them.  Now, normally, I just leave that whole section blank on medical admission forms, because I learned early on that most doctors I have come into contact with place absolutely no stock in the use of supplements for any disease/condition whatsoever.  I have heard their mini-lectures about how they are just a waste of money.  I have learned to just listen and nod, and then do what I think I need to do anyway.

My oldest son is 15, and we went from conventional medicine knowledge only to about as naturopathic as you can get after he was diagnosed with severe reflux as a baby and 'their' medicine was no longer working.  Our ways worked, and have served us well for many years.

Now, we are slightly out of our comfort zone with this whole cancer thing.  I understand the dangers and toxicity of not just the chemo, but all of the scans and hydration and ancillary meds.  It is something we have to do anyway.  So, as requested multiple times by various hospital personnel and admission forms, I provided full disclosure of what I plan to supplement with this week, and from here on out.  I don't want to unknowingly cause some interaction that would make his condition worse.

This doesn't mean that I am about to just turn his health over to these professionals willy-nilly.  I WILL continue to seek out ways to lessen the negative effects of this whole thing however I can.  I know many of them are not proven (possibly because aren't being studied by government approved/funded agencies?  Hmm?).  I know that I might be shooting in the dark.  I know that this could possibly just turn out to give my son 'expensive urine', as his pharmacist pointed out today in a very polite, yet condescending, way.

I had an epiphany of sorts when I was helping Harrison get in and out of the bathroom.  At this point in the chemo process, so much of how he is doing is being monitored and measured by his urine, both the amount and the quality of it.  As he was dragging his IV pole back and forth, which currently has 5 different bags of something or other attached and dripping into him, it hit me.  You want to talk about expensive urine?  I can guarantee that the amount of money I spent on that bag of supplements (that will last a month) isn't even a drop in the bucket of how much those bags of poison cost, and they will be replaced numerous times throughout the day/week/year.  Now, THAT is some expensive urine.

Wednesday, January 25, 2012

True Courage Has No Color (and being truly gifted has no score)

When I was in elementary and high school, I was in what was called the "Gifted" class.  The only criteria for being in the class was getting a certain grade on an IQ test--at or above that score, you were in.  Below that score, you were out.  I have no idea what my score was,  but I made it in and spent two hours every day in a special class, where we did really cool experiments and projects, but never had tests or grades.  It never, ever made sense to me, because obviously those of us in that class knew how to take tests well and make decent grades.  If any group could have benefitted from a fun, grade-less class, it would be the kids that were also smart but not wired to take tests as well.  But, it was the 70s and 80s, and no one asked my opinion about it all anyway.

While I was spending my time in gifted classes, my peers were in their regular science and history classes.  My classes were science heavy, but not a thing was included about history.  As a result, I did not graduate with much of a working knowledge of history, and this wasn't supplemented much in college.  It wasn't really until I started homeschooling my kids that I started learning anything significant about history at all.  In fact, history is my favorite subject to teach them (not so much for my boys, though--they may not be gifted, but they are definitely 'special' in their own ways...).

Fast forward 20-30 years, to present day.  I am finding that I am still learning my history lessons, and my latest one happened at the movie theater last week.  Turns out George Lucas has made a new movie that I probably would never have seen if I hadn't lost the coin toss to my husband about which movie we would see.  Turns out, I am glad I was on the losing end of that one, because that movie was a definite winner.

Red Tails tells the story of the Tuskegee Flying Airmen, an all-black fighter pilot squad during World War II.  I have been fascinated with stories of race relations and civil rights struggles for years, but I just did not know a thing about this story, and I really should have.  I don't know how much of the details were changed or embellished, but even if just the basic details are correct, this movie conveys a story that Americans need to know, regardless of their race or background.  It was well done, with a talented, diverse cast, and is the story of bravery and courage and honor.  These are themes that resonate at all times, but seem particularly important in our present culture.  I heard an interview with one of the actors, who stated (with me paraphrasing because I don't remember the exact quote), "Forget Michael Jordan or Michael Vick--these men are the true African American heroes.  These are the men who should be remembered and emulated".

I would expand it a bit by saying that beyond being just African American heroes, I think these guys are true American heroes for all races.  I hope lots of people see the movie, and then learn more about these brave men.

Saturday, January 21, 2012

Not THE LOOK Prince sang about--AKA Cancer Face

Harrison reminded me the other day about some things I had told him were likely to happen in regards to this whole cancer journey, and he seemed amazed that I had so much insight into it all.  I'm not sure why he was surprised--I have been telling him for years that I used to be very smart before he and his brothers came along.  Now, the brain cells seems to be melting away by the hour....wait, where was I going with this?

Anyway, we were on the way home from that initial appointment with the sports medicine doctor.  We had been referred there by Harrison's pediatrician, who wanted to follow up on his complaint of leg pain.  We were all pretty sure that it was some type of muscle strain, since the pain started after he had sprained his ankle when cutting the grass.  She wanted to have him checked out, just to make sure.  So, we went to the appointment and I almost told them we didn't need the X-ray, because nothing was broken, but I didn't feel like putting up a fight so I just waited while he had the tests.  Then, a few minutes later the doctor came in, with THE LOOK on his face.

He didn't waste any time saying that the X-ray showed a definite abnormality, and the Harrison would need to be on crutches and non-weight bearing on that leg because the 'remaining bone was so weak'.  What?  Remaining bone?  He then said that it was most likely a tumor or possibly an infection, and was referring to an orthopedic oncologist ASAP.  Oncology, as in cancer.  Nothing had been confirmed, but I just knew.  In fact, my whole professional (before staying home with boys) life--I was a social worker at 3 different hospitals-- led me to know exactly what was going on.  The fact that this doctor even said tumor, as opposed to something like 'suspicious growth' or 'spot on the X-ray', spoke volumes.  Doctors tend to want to pass that diagnosis task along to anyone else, and he could have easily done the same.  But even if he hadn't said that, his Cancer Face was a dead giveaway.

I don't know when I first started using that term.  It may be something everyone uses, or something I learned at a continuing ed conference.  It is essentially the look that everyone tends to give a cancer patient/family once a diagnosis has been made.  It is like a mixture of pity/sadness/awkwardness/fear that on some level is conveyed with most face to face interactions a person has A.D. (after diagnosis).  This seems to be particularly nerve wracking for men with cancer.  Cancer is associated with weakness and suffering, and men just don't like being perceived as weak in any way.  They sure don't want every look they receive to convey that weakness.

As we left the office that day, everyone we passed gave me that look, from the nurse to the X-ray tech to the receptionist.  No official diagnosis had been made, but they just knew.  And because of that look, so did I.  On the way home, I began the process of preparing Harrison for what was to come, so everything wouldn't be a total shock whenever he was officially diagnosed.

Among other things, I explained to Harrison about Cancer Face--that people will look at him and interact with him very differently from now on, at least for a few years.  I told him that girls will be all huggy and concerned and speak in a high pitched voice.  I explained that a lot of guys his age would MAYBE mention it once, but then ignore the subject (and possibly him) completely.  Grown women would likely talk only about the cancer, and grown men would ask how he is doing, talk about anything else but cancer, and then at the end of the conversation grab his shoulder and tell him they would be thinking of him.

I also told him not to read too much into friends who will now ignore him, especially guys.  It doesn't mean that they don't care or aren't concerned, but is just an indication of where they are developmentally and socially.  I told him there would be a core group of people his age that would rally around him and be the ones to spend time with him and treat him like life was still normal, and that he would be surprised at the concern some people would show--folks who had never really interacted with him up to that point.

And these things are exactly what have happened.  When you combine these observations about human nature with my disease process/rehab/medical center knowledge, Harrison is starting to realize that maybe I have more to offer in this whole process after all, because, you know, teenagers think their parents are so smart anyway.

We are also at the point where we are seeking out the humor in this whole situation.  We have even adapted a  new song called 'Cancer Face', sung to the tune of Lady Gaga's 'Poker Face' (Ca, Ca, Ca, Cancer Face. Ca, Ca, Cancer Face).  Yeah, we are that kind of family.

Hospital admission is Monday, with chemo to begin on Tuesday.  Boo, boo, boo!

Monday, January 16, 2012

Prayer Barbie (With Special Thanks to Al Gore)

Facebook (and by extension, the Internet) is an amazing thing.  How else could Susan, an old friend from college (over 20 years ago now--wow...), know that Harrison was going to be spending the night last week at the Children's Hospital that sits between the city where she lives and the city where I live?  If she didn't know that, then she would not have come up to the hospital to visit, and if she hadn't visited, then she wouldn't have left a huge box of goodies for all of us to enjoy.  It was like Easter and Halloween on steroids--full of chocolate, and no fillers like generic hard candy and grandma mints (you know, the ones that are pastel squares that melt into a goop as soon as they get in your mouth).  And if she hadn't left that box, then I wouldn't have this amazing story....

I didn't even notice the box until Harrison had been home for a day or so.  I thought it was just an empty container that was waiting to be packed up with our Christmas decorations.  When I finally opened it, I saw all the goodies, and tucked into the side, next to the Hershey bars and Reese's cups, was a little bitty doll, just a few inches tall.  My husband said that Susan's daughter, S.A., must have left it during their visit.

Well, I sent Susan a message, letting her know that I had S.A.'s doll and that I would mail it to her.  I didn't want S.A. stressing about her lost doll for very long.  Susan messaged me back, saying that explained a lot.  She had been asking S.A. where her Barbie was, and the only thing she could get out of S.A. (who is 3 years old) was that her doll was "praying in the box".

Prayer Barbie

Oh. My. Goodness.

That precious little girl had gone in at some point and left her favorite toy of the day in a box of yummy goodness, so that the doll could pray for Harrison while he was in the hospital.  What an awesome, simple childlike gesture of faith.  S.A.'s offering has now been dubbed 'Prayer Barbie" in our household, and will occupy a place of honor in my unofficial hospital bag that travels with us from appointment to appointment. We will no doubt experience many other similar selfless offers and tokens in the future, but this one will forever be known as the first one, all thanks to little S.A.

Thursday, January 12, 2012

Sticks and Stones and Words That Hurt

Right now Harrison is in a hospital recovery room, having had his second surgery in less than a week.  This first one was a bone biopsy on his leg, and this one was to place a chemo port in his chest.  I had never even heard of a chemo port until a couple of weeks ago.

A couple of weeks ago---

A lot sure can change in two weeks.  It was two weeks ago to the day that Harrison had a MRI and the doctor called with the news--probable cancer.  Since then we have four different doctors and had five different tests, and have learned about and discussed words that were not previously part of our everyday vocabulary.  Words like--

  Osteo-sarcoma              port placement               PET scan                               bone scan

            mortality rates                     lesions                 metastasize              hematology

        oncology             leg brace              bone erosion            pathology         liver enzymes

           cadaver bones               Oxycodone               baldness                  audiology tests


And the list goes on and on....

We are in a place and time where things are being dictated to us--places to be and times to be there.  What to eat and when not to drink.  What to wear and how to change wound dressings.

And this is just the beginning.  I have no doubt there will be many more words we will learn and come to despise.

But in the midst of it all there are the good words, too.

                      Prayer                             Hope                   Encouragement                        Faith

                                  Family                      Love                     Fight                     Healing

These are the words we will cling to.  They are the ones that will take us through this crazy time of chaos and uncertainty.               

Saturday, January 7, 2012

A New Reality

Osteo-sarcoma.  Maybe.  Probably.

That is the informational outcome of a biopsy yesterday on my son's leg.  After an overnight stay for an 'outpatient' procedure, he is now back in his own bed.  Fitfully sleeping and in much pain when he is awake.  Not wanting to be left alone at all.

This is the same boy that craved alone time a couple of weeks ago.  His room has been his sanctuary of sorts since we finally moved out of that apartment last year.  He has a cool loft bed, guitar/amplifier stuff, and a wide assortment of posters, CDs and books.  He would go there to escape from his brothers and practice (endlessly) on various guitar chords, or whatever they are called.

Today, that same room is like a cross between a nursing home/hospital/prison.  It even smells like sickness now, like somehow the walls inherently know that something has changed, and are adjusting to adapt.  It now houses a boy that just two days ago craved face-to-face interactions and time with friends, but now is just huddled up trying to make it to the next pain pill.

In the meantime, I watch middle boy show off his new show choir moves (a huge deal, because I never pegged him for the show choir type), and I fix the youngest something to eat (Food is his love language.  Gary Smalley definitely needs to add that to his books), and I wash a load of clothes, and in between I sit in the bathroom and cry a little.  Not for long, though.  Life goes on, and stuff still needs to be done.

So, here we are, adjusting to our new reality.

I think I might be in that bathroom a lot for a while.

Wednesday, January 4, 2012

The Post Where Everything Has Changed

I like to read other people's blogs.  This usually means I am reading posts by people I don't know, since most of the people I do know don't blog (or I don't know about it).  I don't spend time googling and finding blogs, but I usually stumble upon them through Facebook.  These are the ones that are promoted by various Facebook pages I have 'liked', or shared by friends who like what this random person has to say on that particular day.  If I like the initial post, I will normally read a few of their previous posts.  If they keep my interest up, I will generally 'follow' them (meaning that I can click a button and their newest posts will be automatically sent to my inbox to read later).

Some of the most interesting blogs are the ones that have a definite "Before and After" focus to them.  These are the ones that no one would know about if THE BIG THING hadn't happened to them.  They may become famous or have won an award or blew up a building or have decided to run for some office.  Or, there was a big accident, or tragedy, or diagnosis.  The ones that take your breath away and make you sad, or hopeful, or grateful, or...whatever.  These are the blogs that may have had cute pictures or video clips or stupid quotes BEFORE, but then comes the AFTER.  Both paint a picture of that person whose life has been interrupted.  This is my Life Interrupted post.

My 15 year old son has just been diagnosed with bone cancer.

Cancer  - a terrible, horrible, no good, very bad word.

I look back over my posts for the last year--posts that only a handful of people at best have ever read, which is just fine since the reason I blog is that it is a creative outlet for me.  I review books that require blog postings about them, I try to give random stuff away, I post links to fun/stupid videos that make me smile, and I capture moments.  Things that don't really matter or mean anything in the long run, but they will be something for my boys to look back on one day and possibly understand a little about what made me tick.

I don't know if more people will read these posts now or not.  There may be a little more traffic since it will be included on the Caring Bridge site.  I will definitely need an emotional outlet, and I don't yet know what form the posts to come will take.  If you have randomly stumbled upon my blog for some reason, I hope you will come away encouraged.

And my entire family would definitely appreciate any prayers you could send up for us.  We may not know what the future holds, but we know WHO holds the future.