One Year Metastasis Free!

It's almost foolish how long it's been since I last updated this blog.  Almost at the point of no return - if I don't do it now, I'm apt to just forget all about it and let the blog drift into oblivion.  But here I am, (over)sharing the events of our lives once again.  Thanks for tuning in!

I guess I have reasons for being awol since April.  In April I applied to Acadia University in Wolfville, NS (my alma mater) and was accepted into a graduate program offered online.  I have been working on a few courses, and we're toying with the idea of me continuing the program to get my Masters degree in Education, likely specializing in curriculum studies or administration.  We'll see if that happens.  I can only work on the courses for as long as I'm still on medical leave as I have NO desire to mix teaching full time and graduate work.  I know others do it, but (insert whiney voice here) I don't want to. 

So I started two courses in the spring, and finished one before the end of June.  The deadline for the other course was Oct 1st and I managed to get half of it done before summer hit.  Surely I could muster up the motivation to get course work done during the beautiful summer months, right?  You know, I was tired.  Call it treatment fatigue, or call it "I'm the mommy of two pre-schoolers", but I was tired and in my quiet time, REALLY wanted to zone out rather than grow my brain.  During the spring, I had two days a week when the boys went to their day home that I could devote to school work.  When those days disappeared over the summer, I really struggled to get the work done.  It didn't help that around this time I learned I would not be returning to work in September, so my motivation to get it done before my big trip home zipped down the toilet.  The boys and I were booked to fly to NS to spend a month with my parents and to celebrate my grandfather's 100th birthday.  I knew as soon as I booked that trip that I would NOT be meeting the original deadline for course #2.  Jon and I agreed that I could ask for an extension and when I returned from NS and the boys went back to the day home twice a week, I could use those days again to finish the course.  I've been home a month and I am working at a good pace.  Will be done with lots of time to spare.  I realize that I've missed writing assignments.  I enjoy writing and aside from being a tad wordy (REALLY?), I can quite easily throw together some thoughts and make them sound coherent and purposeful.  I'm glad we decided to do this - it gives me something of my own to work on during the quiet days.  Having intellectual and educational goals never hurt anyone, right?  Plus, it's something I can do to enhance my abilities as an effective teacher without having to leave the comfort and convenience of my home.  (Those of you who know me and my side effects know how very important this is!)

Since graduating in 1999 in the two-degree program, I have been operating at a 5.875 (years of education) level.  Even if they had told me that ahead of time, I would not have had room in my last two years of university to squeeze in another course as I was already scrunching 6 years worth of program into 5 years, and I spent my first year or two fooling around in courses that really didn't interest me.  But this way, with these two courses I can upgrade to 6 years of education, which is the max (unless I get my Masters) so I should be able to see a salary increase when I do return to work.

Enough about school.  My trip home was perfect - a great balance of time spent with lots of family and time spent with just Mom and Dad.  I wanted that quiet time.  Because my children will grow up away from my parents, it is very important to me that they have time together one-on-one to help establish a relationship and forge memories that will last a lifetime or more (got my camera!).  The boys played and visited with Grammie and Grampie on their own, and then when their Chapman and Morris cousins were around, more fun was had.  I was happy to be able to spend time with family and friends too.  I just love going home, and this trip allowed me to see my first Maritime Autumn since 1998. 

On the trip, William started to talk.  He went from no words to 5-word sentences in a week.  Crazy boy.  But I love listening to him.  "Mommy, boo tup, pwease.  Momas."  (Mommy, may I please have the blue Thomas cup?)  Owen procedes to take in something new each day, whether it be a phrase, a game, a song, a word (oops - gotta watch my mouth), or even an attitude.  I never know what he's going to say.  Lots of randomness with this boy!  (Aw, Mommy.  Don't cry.  I wuv you.  I really do wuv you.  Now don't you give me any attitude.)

As far as treatment goes, we are still plugging along.  I have a 3-hour infusion of ipilimumab (renamed Yervoy since becoming FDA- approved for stage IV this past spring) every 12 weeks.  I am fortunate to be able to drive 50 minutes to get to a world-class medical facility that specializes in cancer care, treatment, and research.  My treatment "weeks" consist of a CT scan of the abdomen and pelvic region, then a few days later I have a physical, bloodwork, and results from those in a consult.  The day after that I go in for my treatment, and that is sometimes followed by specialist appointments such as glaucoma specialists, gastro-intestinal specialists, and my melanoma specialist.  Typically when treatment comes around, I am heading into the city 4 or 5 times within 7 days.  I don't mind the drive at all, and if I'm feeling up to it, I can stop and shop a bit before or after an appointment.  Can a mother of young children really complain about nice quiet car rides and a wee bit of shopping sans children?  I think not. 

I was due to have treatment in October but my side-effects have been a bit more troublesome since August, so instead, my infusion for this round was cancelled and instead I'll be seeing yet another specialist on Monday to make sure there are no problems going on as a result.  My next treatment week will be the first full week in January. 

I was just realizing last night that it was November 9th - one year from the day of my first surgery, where they did what's called a wide-local excision and a sentinel lymph node biopsy.  My excellent surgeon was able to do the excision without doing a skin graft (like my melanoma specialist had expected) and as a result, the scar is amazing.  It could be like a large crater, but it just looks like a 6 inch train track running down my arm.  This time last year I was concerned about the results of the biopsy, and we were worried about lymphodoema in my left arm.  Oh the exercises!  They hurt.  Several times a day Jon made sure I was working to bring my arm up over my head.  I just remember thinking it felt like I was holding a tonne of bricks when I tried to get higher than my head.  As a result, though, I have had no lymphodoema trouble thus far and my mobility is pretty much back to normal.

One year later, and I've had 6 scans and a few scares, but so far no recurrence.  The stats were 60-70% chance of recurrence within 3-5 years based on the depth of my melanoma and the fact that it was ulcerated, and we are one year in with no sign.  I know, I know... God doesn't work in numbers.  It's not a CHANCE that it might recur - it either will or it will not.  We have spent a great deal of time praying that it does not, obviously.  But I will admit that Jon and I have both become a little too comfortable with my progress and I don't want to rely on another scare to bring us to our knees again.  Get on your knees, Tricia.  Thank God for your life.  For your family, your husband, and your beautiful boys.  For your job security and benefits and quality medical attention.  For your friends.  For your freedom.  Amen.

Could it be spring?

Hi all,

Sorry it's been so long since I have updated.  I guess there is a lot going on at our house this... um... spring?  We thought it was spring, as our snow was melting and our streets were running like rivers.  Then last week we got another little blizzard, leaving us with 15ish more centimeters of the white stuff.  This week looks good - sunshine for until next week, and maybe even night times above zero by then too.  Yes, spring will come.  Question is, will we be hiding Easter eggs in snow this year instead of in the grass?

I guess the purpose of this blog was to update those that cared about cancer treatment and such.  Well, I finished my last induction treatment at the beginning of April.  That means I am now in the maitenance phase, and I will be getting the same treatment every three months instead of every three weeks.  I am getting all of the typical side effects from this drug, and all but one come in waves.  I'll go a few days with no rash and minimal itching, and then it will hit me full force, all over my torso, legs, arms, and drive me just about batty. Aveeno seems to work somewhat, and the rash isn't painful (just a bit "firey") so I can't complain too much.  I am feeling a bit tired lately, and headaches come and go, but mostly I am the same as always, feeling pretty good and able to get enough done in a day to feel useful. 

Oh - for those who didn't know, at the end of March, the FDA approved ipilimumab (now named Yervoy) for advanced stages of cancer (some stage III and stage IV).  This was GREAT news.  If cancer does return for me, I will be able to get the same drug I am already on.  It is a big breakthrough for those patients waiting for some sort of treatment - especially those who have gone through the few options there are and are kind of sitting ducks.  The approved treatment is 3 mgs per dose, and my clinical trial is 10mgs per dose, so I'm really being hammered with this stuff! 

I will have my next CT scan this Wednesday, and an appointment on Thursday - maybe I'll get the results back from the scan then?  It's been 3 months since my last scan.  Melanoma is a fast-growing cancer, and will form masses within 2 weeks.  It's a yucky thought.  Anyway, I would appreciate your prayers that the scan will be clear again.  It's nervewracking but I do know and believe that God already has it all figured out and will not be surprised either way.  I have many more thoughts on this, but I had better stop now as thinking about it doesn't help my anxiety level...  thanks for understanding.

So it's Easter which means MUSIC.  There is a lot going on this week with rehearsals, sound checks, services, in addition to school work, scans and appointments, and me having the boys all day this week as it is Easter break.  AND - we made big plans this weekend to have Erica, Brent and the kids here for Easter weekend.  Mel and Matt (Jon's sister and husband) and the girls will be in Camrose with Jon's parents, so we'll have a great time between here and there, eating, egg-hunting, and churching.  I'm really looking forward to it.  We do have a pretty fun family...

I started my course a few weeks ago - Education and the Law.  I was doing fairly well at getting a few hours in each day and I am working on my 3rd of 13 assignments (did quite well on my first one - 9/10).  It's nice to know that I can slip back into the groove without too much difficulty.  At least at this point.  I'm sure the expectations will change as I work my way through.  I know this week will be a write-off in terms of quality work time with everything else that is going on.  Work harder next week, maybe?

I am beyond frustrated with the paperwork side of this medical leave.  ARGH.  I have had to hassle both my general practitioner and my oncologist for the paperwork they have had in their possession for weeks and weeks because ASEBP (school benefits people) calls me almost daily to ask if I have had any luck.  I have not been paid at all for the month of March, and April is more than half over.  Makes things a little financially.... snug.  Apparently, my oncologist mailed his off last week and my GP was doing his over the weekend.  I will call today and pick it up today if it's ready, so I can mail it off myself.  I am so done with this headache procedure, and I'm sure that once it's all finished, there will be a glass (or four) of wine and a soak in the tub waiting for me. 

So, I dislike ending this post on that note.  What fun thing shall I write about?  The boys have been sick since Thursday night but fevers are gone and they are playing happily this morning?  That's happy.  Jon works a great shift this week and will be home by supper time each night?  That's happy too. 

Until next time,

Tricia

p.s. Easter is a holiday that I would like to be as celebrated as Christmas in my house.  It has even more significance and fills me with more conviction, hope, and gratitude than any other time of year.  I'm wishing you a meaningful, hope-filled Easter 2011.  <3

March? Already?

Wasn't it just October?  It's been 5 months since the ulgly mela-diagnosis.  Wow.  It's been too long since my last post.  I have no real excuses - I'm not too too busy, but I guess I have lacked inspiration and ideas.  I'm not feeling particularly inspired or "idea-full" today either, but I think it will all be okay.

I just used a neti-pot for the first time, thanks to the prompting of a few girlfriends this morning.  Apparently you aren't supposed to use it if your nasal passage is completely blocked.  Oops.  Girls!  Hopefully nothing nasty happens as a result of that little mistake.  I will admit it was MUCH more convenient to use than the make-shift one I tried out last weekend using a funnel and my own saline solution.  Today's didn't burn nearly as much. 

Some of my singing friends and I are preparing music for a local women's retreat, and we're working on some quartets for Easter services in our city.  S, T, and J - do you know that I love singing with you?  Not just singing, either.  You're cool if we're singing or not.  :)

I have to write a resume?  A what???  A resume?  How do I write one of those?  I've completely forgotten.  I haven't written one since my final year in university, when I applied for three teaching positions.  You may wonder why I would need a resume.  Well, Jon and I have always been the "I want to go back to school someday" kind of couple, and this time in my life screams, "DO IT NOW!  DO IT NOW!"  It's true - I will never have a time like this again - my children go off to the day home, I am not working, and I'm still (sort of) getting paid.  I am apparently only 4 credit hours away from moving up on the pay grid, so why the heck would I NOT move on this?  Of course, each univeristy course is 3 credit hours, so I can't just take one course.  I have chosen to take online courses through Acadia, my alma mater.  Convenient.  No transfer of transcripts.  But I have to write a resume? 

Anyway, I am registering for two graduate level courses, which would be enough to bump me up to 6 years on the pay scale (I'm currently at 5.875 and have been since May 1999).  Another fun fact - I'm assuming (hoping?) that these graduate courses would also apply if I was to take my masters at some point as well.  My hope is that I can work on these courses this spring and get them mostly done by the end of June.  Wish me luck.  The only thing standing in my way is wriitng this stupid resume.  I don't even know where to start.  Pointers?  I guess I have to remember that I'm not applying for a job there; they just want to know my post-graduate work history.  That won't take more than a sentence or two.  If I'm this nervous about the resume, what state will I be in when asked to do my first assignment?   (I'm kind of nerd, so I know I'll be fine.  Plus I have an uber-articulate-nerd living with me for help when needed.)

Treatment is going well, I assume.  I am certainly feeling like I am getting this drug rather than the placebo.  I don't want to be stupid about it, so I'm not convincing myself of that, but I'm still fairly certain.  I have little side effects (too personal to post about here) that are, at this point, very manageable.  However manageable they are, they are consistent and have been present since the day after the first treatment.  It's been a month.  I have a hard time explaining these side effects any other way.  So, that's cool. 

Some of you have asked what treatment is like.  Well, "it" is sort of spread across two days.  On day one, I drive myself up and do paperwork, bloodwork, more paperwork, then meet with the clinical trial nurse and then my oncologist for a physical exam.  Ideally, the results from my labwork should be available by the time I meet with the doctor (that's how they schedule it - an hour or more between), but that hasn't happened yet.  I think the lab is, like most labs, slightly behind.  I can't complain too much, though.  They run a pretty tight ship up there, and I'm rarely kept waiting long.

On day two, Jon drives me up and drops me off (as per my request).  I get a fun warm pack to put on my arm, then an iv is started, and I'm led to the bed/chair that I'll be in for the session.  There are many of us in one room, so people-watching and visiting are often viable options to pass the time.  After the nurse goes over the treatment with you (to make sure you know what you're getting and as another safety check to make sure there isn't a mix up), they hook up the machine.  Normally it's a few minutes of saline first, then 90 minutes of the drug.  They have to do vital signs before, during, and after the treatment, and since they won't do blood pressure on the arm with the iv, and I am not allowed to have it done on my left arm, they do blood pressure on my leg.  Did you know that your blood pressure reads way higher on your leg?  It freaked me out the first time.  I'm normally a 105/65 girl, but on my legs it's more like 140 over... I can't remember.  Something higher than 65.  TOO HIGH.  Apparently it's normal.  Moving on - after the 90 minute infusion, they leave the iv in and start the 60 minute observation, just to make sure my body doesn't have an adverse reaction to the treatment.  They take the iv out and I'm sent on my way.  That's it.  No biggie.  I read, I visit, I text Jon, and then I'm done.


I am on a mission - to strive to keep my actions and attitude pleasing to God.  Situations that frustrate and scare me, people who aggravate me, time that limits me.... all things that challenge my resolve.  There are several things going on in life right now (little and big) that seem to want to engulf me in anger, bitterness, and even self-righteousness.  (Don't worry, family - I am fine!)  May God grant me the heart, words, and ears of a humble servant.    Those of us who tend to be overly confident and overly confrontational find this to be a challenge indeed. 

Two weeks in...

... and still feeling pretty good. The fatigue after the first day or two of treatment has really subsided and I'm just left with a few minor little things that are causing major mind games... "Is that a symptom?"  "I've always had that, but this..." and "I wonder if that is because of this or is my mind causing that to happen?"  I have to just stop and walk away from those nasty little games in order to save my sanity.  Anyway, I am feeling almost 100% after having tonsilitis (cause of the month-long hacking cold) and the rest of the family seems to have recovered after the circulating bug we've had since New Year's Day.  The weather this week has upped our spirits even more, and I'm feeling really on top of the world in terms of staying organized and scheduled.  Oh - except for getting into a little fender bender - that certainly dropped me down a notch or two.  But not for long.  I had a couple of productive and encouraging meetings, a day shopping with my best friend, a day out with Jon to see the RV Show, a lingerie party for another friend, and lots of time in between with my boys (who are back to believing in sleeping through the whole night at least most of the time).  It's been a great week. 

Valentine's Day doesn't hold a lot of weight in our house, and it never did, even when Jon and I were dating.  He has always taken offense to Hallmark's demands that every good husband WILL spend money on this particular day to prove that he is romantic and worth keeping.  You could be a loser all year, but if you buy roses, chocolate, even diamonds on one day in February, you are romantic.  Now, I agree with his philosophy wholeheartedly, but as my friend and I discussed the other day, I still feel a little left out on Valentine's Day.  It just causes me to dislike the day in general.  I need to focus on my two little valentines and use the opportunity to teach them how to treat a lady.  Maybe that should be Jon's job...

I have been giving some serious consideration to taking a few courses.  Many years ago I squeezed two degrees into 5 years and one summer, and that was great and all, but as a result, I ended up with my TC5 rather than my TC6.  From what I can figure, I am only 4 credit hours away from this TC6, and I have always intended to make up for that some day.  Well, Jon and I have discussed that perhaps "some day" is now.  I can't imagine I will ever have an opportunity like I do now - "sick" but healthy, sending my children off to the day home every weekday.  In hindsight, when I was on maternity leave with Owen, I could have taken a course or two.  He was such a good baby.   But I didn't know that ahead of time.  And then, on mat leave with William, I still could have - William was cooperative enough then, and I could have worked while both boys napped in the afternoons.  Again - no way to know that ahead of time.  So anyway, it seems like now is the time, so I've contacted the Graduate Studies department at my alma mater and requested some information and perhaps some academic counselling to help me make the best decisions.  I will probably need to take two courses (as most courses are 3h) to make up my missing 4h, but that's okay.  I found two courses that I'm really quite interested in taking.  I assume that because I am a graduate I need to take 5000 level courses rather than 1-4000 or Masters's level?  Anyone have any knowledge to share?

I'm getting pretty excited for our contemporary worship night at church this Saturday.  Shelley chose great music and the band has been working hard getting comfortable as a group.  I think it will be great and I'm looking forward to the benefits of working with the same people - getting a feel for the expectations and styles of each member. 

I'm praying this week that I will glorify God in my meetings, music, parenting, mundane housework, time management, friendships, and marriage.  It's a fairly large undertaking but I stand a chance because of the unending and unfailing help I have access to. 

A New Era

Okay, so it's not really a new era.  But it sort of feels that way.  How about a new chapter.  Does that sound a little less dramatic?

Here's what's new:

Mom (Grammie) went home yesterday.  Many of you were surprised at how quickly that all went down.  Really, there is an explanation.  Originally, Mom was going to come out to help with the boys and the house after my second surgery in December, and then she would stick around to see how my body handled treatment.  Well, she did help with the boys and the house after surgery and around Christmas, and it was fabulous.  But because of the infection I had, paperwork, and additional CT scans, the beginning of my treatment was significantly later than we had imagined.  We were thinking it would have been the beginning of January, when in actuality, I didn't get my first infusion until this past Tuesday, February 1st.  In hindsight, we probably could have sent Mom home for the month of January and had her return for that first treatment in February... 

Anyway, so the plan became that Mom would stay through that first treatment and make sure I handled it okay, and then she would go home.  We were then told that it would be quite unusual for me to have any side effects until after the second or third infusion (Feb 22 and March 15).  Well, she wasn't going to stick around until then!  We all decided it was best for her to head home, and if absolutely necessary (that means if I actually get side effects all and if they are unkind to me) she can return later. 

So that's the scoop.  She flew home yesterday.  Owen was very excited to wave to Grammie's airplane in the sky.  We already miss her.  She did so much for me, for Jon, and for the boys.  I know it will be an adjustment to get back to life with just the four of us.  Guess I'll start talking to myself again.  I definitely need to find some projects to work on - obviously keeping house, but also scrapbooking, exercising, getting rid of this nasty cold/flu that doesn't want to leave our house...

Mom, in case I didn't say it enough while you were here - Thank you for everything you did.  From keeping me company to changing William's stinky diapers to folding our laundry (yes - even underwear), you were a huge help and it was a great blessing to have you live with us for 2.5 months.  I love you.  I know it was a big sacrifice (for both you and Dad) and that a lot of people worked together to make it work on both ends.  My family and friends here embraced having you around, and your family and friends at home did what they could to keep Dad comfortable and well fed.  What a fantastic community we have - Alberta combined with NS to create one large and loving network.  Cool.  Thank you all so much.  Really.

Okay, so that's one part of the new "era".  The second part of that is the fact that I actually started my treatment this past week.  It was quite a reasonable procedure.  I have to go up two days in a row each time - one day will involve bloodwork, paperwork, a physical exam, and a consultation (where I discuss my health in the previous weeks - they want to know how I'm feeling physically and emotionally), and the next day is the infusion.  Each day's visit lasts about 2.5 hours.  The second day I showed up, they started the IV, and I was given the 90 minute infusion.  Once that was done, they needed me to stick around for an hour, just for observation in case I had some sort of reaction to the treatment.  I didn't.  Well, I don't think I did.  I did hit a strange fatigue on the way home in the car.  I haven't felt anything like it before.  I just didn't care to talk or move.  Jon thought I was upset with him for not taking me to lunch afterwards.  Really, I was just too tired to care, think, discuss... anything.  It hit again that afternoon for an hour, and then the next morning as well.  Then the following afternoon it was quite consistent for a few hours, but since then I've been fine.  I try not to over-analyze too much (with not much success).  I did read that some people experience fatigue during or within 24 hours of an ipi treatment.  So... did I get the drug?  Or, maybe it's just that we've been sick and not sleeping well these past few weeks.  Maybe I just hit a wall.  Who knows.  Guess we'll see what happens next time.  I go for my next treatment on Feb 22nd/23rd.  I'll keep you posted.

Well, this has been long enough.  Each time I sit to write, I decide to keep it short.  This is what happens.  I don't know how to shut up.  There is even more I could talk about - visits with the Friesen family, crop club, my fun walk/tea date this morning and maybe a Superbowl date (if we can shake this stupid cold bug), but alas, now there is no time.  I must run.  Cheers.

Thinking and Waiting

William started walking at 10.5 months.  I remember thinking that was 6 weeks earlier than Owen had started.  Owen started walked the week he turned one - it only took him days to go from one or two steps to 9 or 10.  William, on the other hand, took his one or two steps at 10.5 months, then the next week added a step, then a few weeks later did five or six, then back to four, and by his first birthday was walking those same 9 or 10 steps Owen had been by his birthday.  Interesting how they both arrived at the same "spot" in such different ways.

I was reading early this morning - Jon had an early shift today.  He wakes up at 5:15 and is out of the house by 5:40.  Normally I have no trouble falling back to sleep, but today I ended up reading instead of snoozing for that peaceful hour before the children wake up.  I looked at my bedside table and had to make the decision between my current novel ("The Wednesday Letters") and a small devotional book called "His Promises".  I picked the devotional, and flipped open to a page.  (I like to do that - randomly pick a page.  That way, if it's something that perfectly suits me for that moment, I feel like God directed me there.)

Anyway, I turned to a paged titled, "He Goes Ahead of Us", which focuses on John 10:4.  "When he has brought out all his own, he goes ahead of them, and the sheep follow him because they know his voice."
I immediately pictured my two little boys learning how to walk.  Any toddler, of course.  When we teach them this fundamental skill, we do not stand behind them, and cheer them on from behind.  We do not give them a gentle nudge, wish them the best, and turn back towards our cup of coffee.  You know how it goes; at least one adult stands or kneels just far enough away as to entice the toddler to strive to reach.  Too close would be too easy; too far is unrealistic and setting the toddler up for failure.  We make the call - how far can they go today?  "I'll move this far away, and with praise, encouragement, guidance, and maybe even a little help, he can make it this far.  I know he can!"  Then, once that goal has been reached and there has been a little celebration, we take it a step further back and try again, knowing that life's requirements dictate he will need to be able to make more than three or four steps in a row to succeed. 

How our Heavenly Father is the same!  It always comforts me to imagine God in this way, and it's become so much clearer to me since I've become a mother.  But as I start a journey into a daunting and admittedly scary place, I know that God is guiding me along, challenging me to take each step because He knows I am able.  He goes before me - each step I take, He has taken before.  What a comfort.  I hope it comforts you too.  I am well aware that in my circle of friends, I am NOT the only person who has, is, or will wander into unknown territory; who is in the throws of making decisions; who faces something fearful.  Often the saying goes, "God is with us."  In cases like mine, and maybe yours, perhaps, "God goes before us" is even MORE reassuring.

Just a thought.

If you were wondering, I am still awaiting a phone call from the Cross with information regarding my CT scan.  I am expecting to hear soon - the clinical trial nurse (Leslie) wanted me to be done my antibiotics from Christmas (two more days) before I start treatment.  I hope the CT scan will be beginning of next week so we can start treatment immediately afterward.  Would like to get this ball rolling.  Thank you for your prayers.  We are feeling very "at peace" with our decision.  My philosophy regarding the 50/50 chance of getting ipilimumab vs. placebo:  We will pray that I will get the drug.  And if I don't get the drug, we will pray that it is (a) because I don't need it, and (b) someone else who needs it gets my share.

Ipilimumab, here we come.

Probably not much of a surprise to anyone who has been following up on our story, but we had to make our decision this morning and we chose the Ipi trial.  It wasn't an easy decision, especially after seeing the woman in the waiting room this morning who had just finished her one-month intense infusion of Interferon and looked really good.  But after talking with our oncologist and the clinical nurse, we really feel like we've made the best choice.  We heard some more information this morning that backs our belief that this trial is the right thing for us at this juncture.  It's also a comfort to know that if the melanoma returns at any point in this trial, I will be removed from the trial but still have VIP care from my new friends at the Cross, and that likely by then the FDA-approved version (smaller dose) of Ipilimumab will be available for me since I would be at stage 4. 

I had lots of bloodwork done today and my first ECG (which was remarkably fast and easy), and we have a CT scan to book as soon as I am done my antibiotics from the infection in my drain site that developed over Christmas.  Once the scan is done, I will be able to start the next day.  Scan will probably be done mid-late next week, so I guess that in two weeks we'll be starting the trial.  Pray that I will recieve the drug and not be in the placebo arm, and if I am in the placebo arm, pray that it's because I won't NEED the drug.  We obviously want NO RECURRENCE.

I appreciate having all of your support!  Our team is so big, and it is so calming to hear "We support you in whatever option you choose."  I can't imagine dealing with justifying our decision to people who love us but disagree with our choices.  So, thank you!

I just want to say that at this point, I'm almost excited to start building a relationship with the people who work at CCI.  Today they made a great impression with their personability and helpfulness.  This doesn't surprise me as I have only ever heard great things about this institute.

Jon and I treated ourselves on the way home today.  We were just going to get a coffee but when we drove past Montana's, Jon remembered that it's 1/2 off Wings Monday, so we stopped in and enjoyed one of our favourite "cheats".  We are starting a calorie restriction "diet" tomorrow - simply making sure that we really restrict our calories and get in lots of healthy, natural foods.  I am looking to eat 800-1200 calories per day, with two cheat meals per week if I want.  It's what I was doing this summer/fall when I lost 28 pounds before my first surgery, but I've gained some of that back, so it's time to start again.  Mom is game to join us so we'll see 1) how much weight our household can shed, and 2) if restricting calories can help boost my immune system to fight cancer even if I am stuck with the placebo. 

That's all for now.  Tomorrow morning I am back to the hospital for another dressing change, then Mom and I need to go shopping for a new microwave.  Ours *ahem* broke this morning.  Time to go get those boys.

Oh... funny moment  yesterday.  Owen wanted me to come play in his room.  I was to lie on his bed with the lights out.  He went out and shut the door, then popped his head back in and said the following:
"Good night, Mommy.  I love you.  You stay in bed or Owen will spank."

Nice. 

Jewelry

Can I call it a perk?  Maybe not, seeing as I buy jewelry regardless.  Anyhow, shopping is something I enjoy - let's just be honest.  And cancer doesn't change that, so I jumped at the opportunity to shop for a medic alert bracelet.  Why do I need one of those?  Well, once you've had a lymphadenectomy, there are some rules regarding the treatment of that arm for the rest of your life.  Since I had lymph nodes removed from my left arm, I am not supposed to have blood taken or given, IV treatment done, or blood pressure taken from that arm again.  The large scar on my forearm will remind me to say something when the nurses reach for that arm, but what happens if I'm by myself and unable to say anything? 

So, I will have a bracelet that will announce to a health care worker to "Protect the Arm".  And it will be girly and pretty because I want it that way.  I figure it's for a good cause.

Jon and I bought a little wooden toboggan for the boys for Christmas.  Yesterday, as we were getting the boys ready to go to Bev's for the day, Mom had the idea of putting them on the toboggan.  Well, you should have seen their eyes light up.  Mom says they had a ball... until they tipped and Owen got snow on his pants.  Apparently this is a big deal to him.  When I asked him last night if he wanted to take the sled over to Bev's again in the morning, he said, "No."  We found a solution.  Last year I had purchased a little raised toboggan (not for sledding down hill) to put William's infant seat in.  I had to check to make sure it was long enough for two little bums.  It was, so I asked Owen again.  He still said, "No.  Snow on my pants."  I suggested that I had a way to "make it better" - as he would say.  I didn't think that by simply showing him the sled he would understand why this one was better (because it's raised off the ground and has a railing).  I tried to explain before I showed it to him.  He wasn't buying it.  He complained and said, "No thank you," over and over until I brought the sled out.  Immediately he understood and was very excited to try it out this morning.  They both climbed in with no tears as they left home, and Mom says they BEAMED the entire way.  Making my kids happy makes my heart smile.  I know making them happy isn't supposed to be our primary goal, but when it happens it's great.

My darling mother and I spent many hours in the past few days organizing our boy clothes.  It was a big job, and it required 20 clear rubbermaid bins, but we are just about done.  That task has been looming around for a very long time and I'm so relieved that the pile of boxes and garbage bags full of clothes from the basement storage room are now clearly labeled and organized and stacked on the side of the room.  Whew!

I saw my surgeon again on Monday, and she seems to think things are healing nicely.  She did acknowledge what the doctors had been saying here - the area around the incision was a little red, warm, and hard (although redness and warmness has decreased to almost nothing), so she took a sample of whatever was in there and sent it away for tests.  (I don't think she's testing for cancer again, by the way.  She wants to know if there is infection in there, and if there is, she will modify the antibiotic prescription I am currently on to better suit what's happening.)

So that's about it.  I have been having some ups and downs these past few days - not really downs, even.  Just little "hits" of reality, or rather, what reality COULD be.  I think it's due to the fact that we are so focused on numbers and percentages and side effects as we choose our treatment plan.  Once we make the decision, we can put those aside and just LIVE.  God is continuing to show Himself to us as we struggle through - Jon and I have been watching Max Lucado's sermons that he has available on his website.  Some of them pertain so closely to what we are experiencing that it's almost scary.  I think we'll watch those videos over and over when we are feeling a little anxious or worried.  Once I watch them another time or two, I'll feel comfortable and confident enough to relay what sticks in my brain.

The weather is beautiful this week - right around zero and no wind, just big, fluffy snowflakes.  Maybe we'll go out for a walk this afternoon.

Oh... and we are praying today and tomorrow for old friends of my family.  The father will finally be having brain surgery tomorrow morning.  This in itself is an answer to prayer, but of course, we want to be praying for the best possible outcome and for the family as they travel to be together. 

New Year, New Challenges, New Adventures, Same Solid Rock

I can't believe it's been nearly a 4 weeks since I last updated.  I apologize.  It was just pretty crazy in my world with appointments, family visits, and Christmas prep.  It has been a wonderful month, but busy, nonetheless.  I appreciate you holding out for another update.  Your patience was not in vain!

So, I'm fairly certain I haven't posted since we recieved our good news a few weeks ago.  I have felt the need to explain our good news as I fear many people have been deceived as they don't know the full story.  Not to take away from good news - we certainly had cause to celebrate.  Let me explain:

When I had surgery in November, they did two procedures at once - the wide local excision of the mole site (leaving a 6-inch scar and indent in my left forearm), and then a Sentinel Lymph Node Dissection.  This is done to see if cancer has travelled from the original site to the lymph nodes under my arm.  They inject dye into the melanoma site and using xray, trace where the dye travels to first.  The first lymph nodes to receive the dye are called the sentinel nodes.  They would have also received cancer cells first.  In that first surgery, two sentinel nodes were removed.  One week later, we were told that they had tested positive for cancer.  Having cancer in your lymph nodes immediately moves you into stage III.  At this time we also learned that my CT scan (which checks to see if cancer has spread and metastasized internall) came back clear, with just a few little dots here and there (which is very common for anyone).

Move ahead a few weeks - as soon as we got our yucky results at the end of November from the first surgery, they scheduled the Radical Axillary Lymph Node Dissection (could be called a lymphadenectomy or something like that) to remove and test the rest of the nodes under my left arm.  (You have anywhere from 25-40 nodes there.)  I don't know how many nodes they removed in total, but the news we got two weeks ago was that none of the REST of the lymph nodes have cancer in them.  It would appear that for the time being, I have no cancer in my body.  That is why we celebrated!  At that appointment, we were more nervous than we had been the first time we were getting pathology reports.  She walked in and immediately said (with a smile and a faint tear) "Good news!"  I kind of played the disbelief card for a moment... like I had heard her wrong and she meant, "Good news - your appointment with the doctor has been moved up to...." or something like that.  But now, after asking her to clarify, she confirmed that she meant that no more lymph nodes had cancer in them.  I was thrilled, Jon looked like he wanted to kneel and thank God right then and there.  I'm sure he did (as I did) the whole time we walked out of the building, and it's the first thing we did as a couple when we got to the car.  We kind of have this arrangement after results - talk to God right after, either asking for direction and hope or expressing gratitude for good news.  Then we went to Red Lobster (one of our silly little indulgences), and celebrated with a bottle of cab-merlot, lobster-artichoke dip, and crab-stuffed mushrooms.  It was A LOT of fun to share good news for the first time in a while.  And the way everyone responded with praise to God was a blessing to our whole house.  Mom, Jon, and I loved to read your inspiring and encouraging words as they came streaming in.

Now for reality, just because I want you to know what we know.  These latest results do nothing to improve my "chances" so to speak.  My numbers do not change.  I'm sure it's still good news (made evident by the doctor's smiles and tears) but on paper they don't change much.  Here's what my numbers are for those of you who want to know what I mean when I bring it up:

Stage III Melanoma patients with 3.8mm Clark's level IV ulcerated melanoma (which is what mine was) have a 50-55% chance of survival over 5 years.  Melanoma is an agressive cancer and is quite likely to recur.  When it does recur, it is more likely to develop internally on an organ, like the liver or lungs than on the skin like it did originally.  So, without doing any form of treatment, I have 50-55% chance of survival through 2015.  Those numbers don't thrill us, obviously, but God doesn't work on numbers determined by the medical community.  By the way, one thing to remember is this - if melanoma is going to recur, it is most likely to recur within 5 years (even 2-3 years), hence the 5-year survival rate.  It COULD recur within 10 years, but after 10 years, if it hasn't returned, it most likely won't.

Treatment - we are in the process of deciding between two (or three) treatment options, based on these numbers.  Here's what we're looking at:

Option 1:  No treatment.  Obviously, this means we are relying completly on faith, and perhaps dietary/fitness changes Jon and I are planning to initiate when all the Christmas goodies are gone.  This keeps us at 50-55% survival over 5 years. 

Option 2:  Interferon Alpha-2B.  Some facts about this treatment:

a)  One year program - 5x per week intensive iv infusion for first month, and 3x per week self-injected dose for 11 months

b)  Highly toxic - Interferon kicks your butt.  It's a harsh treatment, and about 25% of patients do not finish the entire program due to blood or liver issues.  Expected side-effects are moderate-extreme fatigue, nausea, depression, and anxiety.  Yay.  Sign me up. 

c)  We discovered that we WOULD be able to set up the iv infusion therapy in Camrose, so I could avoid needing someone to drive us into the University area in Edmonton (congested traffic) in our huge vehicle in the middle of January.  This is MUCH more convenient.

d)  Interferon apparently increases my survival rate by 6-10%.  Not a lot.  And apparently, it does NOT improve my survival rate after 5 years.  The 10 year survival rate is not affected, suggesting that interferon treatment might only postpone problems.  One document I have states that, "Interferon Alpha has been approved because it was demonstrated that it took longer for the disease to come back (for patients receiving this drug), not because it is able to increase the survival of patients treated with interferon."

e)  My melanoma specialist, Dr. Tom Salopek, brought this treatment to my attention at our very first meeting.

Option 3:  Clinical Trial - Ipilimumab.  Some facts about this treatment:

a)  My oncologist, Dr. Mike Smylie, is heading this study up.  It was brought to my attention when we met just a week or two ago.  It is a study being conducted by the EORTC and will take place in many countries throughout the world.  It is sponsored by Bristol-Myers Squibb. 

b)  This drug has been studied in Europe on Stage IV cancer and is seeing quite exciting results.  I don't know numbers for sure, but from my online research, I have seen numbers from 25-45% increase in survival rate.  One would hope that results like that for stage iv would be mirrored in stage iii. 

c)  Three-year program - infusions every three weeks for three months, and then every three months for three years.

d)  Side effects are much more tolerable.  Many have no or very tolerable side effects, some have skin rash, fatigue, and diarrhea, and only a few experince headache, abdominal/colon issues, or headache.

e)  Here's the clincher - this is a double-blind trial.  That means, ladies and gents, that out of the 950 patients in the trial, 475 of us will have a placebo.  Nada.  No drug.  That's the hard part.  The reason for this is that this drug is not yet FDA-approved for stage iii, and Dr. Smylie (et al) would love to get it approved.  The government needs successful numbers before it will approve a drug, and trials are how that's done.  Yes, it feels a little like they are gambling with my life.  However, I do have faith in God, and I ultimately believe that it is He who will determine whether or not I am healed, not a drug.  I want to take advantage of the medical resources that are made available, but in this situation, I feel I can not spend too much time worrying about the whole placebo thing.  Worst case scenario - I get a placebo and I'm still at 50-55%.  (Which is only 6-10% less than if I suffered on interferon for a year, and that's only for the first five years.)

So, with all this information in front of us, Jon and I are on the same page.  We are leaning toward the clinical trial, heading into it with prayers and hope that God would see fit to provide me with the actual drug, and if not, that He would open up another door for us down the road.  We haven't made up our minds for certain, though.  We have until January 12th.  Your prayers are greatly coveted!!!  We need a decision, and we need peace of mind. 

p.s. We also need the melanoma to NOT come back as there is a high chance of recurrence.  NO MORE MELANOMA.  Repeat after me.... no more melanoma.... no more melanoma....

Okay - just a bit more.  If you've made it this far you are a true champion.  Just to keep you up to date - I had a JP drain put in after my surgery on December 7th.  It was still draining lots at my appointment with the surgeon (Dr. Dabbs) two weeks post-surgery, so she left it in, thinking she would remove it at my appointment with her on January 3rd.  On the 23rd it because very painful - like little razorblades cutting into the area when I moved.  Erica and Brent arrived that night, and I headed into the hospital to get checked out.  I had an infection, and was treated with iv therapy.  I went in once a day for iv treatment over Christmas (hence two tubes in my body - one drain and one iv in the elbow of my right arm), and on Sunday morning, as we were getting ready for church, I realized I had no more pain!  Yay - the infection must be going away.  I was getting ready for my shower - I stood up and my drain slid right out.  We went to the hospital instead.  :)  They dressed it up and sent me home, telling me to come back at least once a day as it was still draining lots.  I spent several days with a drenched side feeling quite uncomfy, trying to do nighttime dressing changes at home, and unable to bend my right arm due to the iv, but eventually, the draining started letting up and the iv came out.  I'm feeling pretty good these past few days.  No tubes, no drainage, and no home-dressing changes.  I am still going in every morning to be assessed as the area is red and warm and there is hard tissue under my arm that they are trying to keep an eye on, but I feel great otherwise. 

Mom, Jon, and I were fortunate enough to have Erica and Brent and kids here for a week for Christmas.  Lots of fun but Erica - we forgot about the train cake!!!!!  We had a few dinner dates with wonderful friends this week to help ring in the New Year, and Mom and I de-Christmassed the house yesterday.  I have to admit - the tree made my living room look better.  Tree is better than no tree...

There.... wow.  We've had company (twice) and lunch since I started writing this.  Kudos if you made it through.  God bless you all.  You continue to be instrumental in my positive outlook.  And we continue to strive to know God better - to study and pray and grow closer together as we grow closer to Him.  Thank you for your prayers!  We love you.