Grandma’s Birthday Party: Part 2

More pictures – these deserve a post all to themselves – attempting, and failing, to get a picture of all of the great-grandkids with grandma.  Ha!

So maybe not a total failure.  They ARE all in the picture. 

Piece of June

June was a very busy month, but I don’t have many pictures that show June.

In the first week of June, I flew to Boston for a class for work.  I also found out I have CML.  And we left for a trip to WI to celebrate my grandma’s 80th birthday.

Adam’s brother visited soon after, and Julia had her dance recital.  (Video on FB – can’t upload here, thank you, Apple and Blogger disliking each other!)

I had a number of doctor visits, and then last Wednesday Adam left for Philadelphia for National Homebrewer’s Conference.  I stayed home with a sick baby.  Adam came home yesterday, the last day of June. 

Gone in a flash!

erin

Grandma’s Birthday Party: Part 1

I’m separating these into multiple posts because there are SO many pictures.  However, I’m not posting all of them – they are all on FB, and all family will be getting a CD or email (forgive me, I was a little sidetracked by stupid cancer for a couple of weeks).

Grandma (my mom’s mom) turned 80 this year on June 13.  My mom and her brothers put together a surprise party for her, and all of her grandkids (except for one) made it and all of her great-grandkids were together for the very first time.  Lots of fun was had, good times, lots of hugs, catching up, and picture taking.  We love you, Grandma!

Cousin Stephanie and her two boys:

Cousin Kristin, her husband Tom, and her two boys:

Grandma arriving at her party:

Grandma talking to Lis and Dante:

Grandma meets Anna for the first time:

Sisters Katie and Stephanie:

Grandpa John joined in the fun as well (Grandpa John is my dad’s dad):

Cousins digging for who knows what in the sand box:

Grandma and her sisters-in-law:

Grandma with her sisters-in-law, brothers-in-law, and brothers:

Erin

Big Girls

Julia lasted three years in our Fisher Price booster.

Raven?  Two.

Anna?  Barely 13 months. 

This last week, Anna became increasingly upset that she was in the booster and not at the big girl table.  And so, with a broom in tow, I moved her to the Big Girl Table.

Bittersweet.

Update 7/1

Hello and Happy July, everyone!

Today I had a round of tests done that will determine whether I get into the drug trial or not.  At 2 pm I had blood work – I arrived @ 1:47 pm, was in the chair by 1:55 pm, and was on my way to my next appointment (EKG) by 2:20 pm.  Arrived at a different clinic @ 2:25 pm, filled out paperwork, and was in the process of my EKG by 2:35 pm (appointment was for 2:30 pm – sweet!).  Then, off to the hospital for my ECHO (which I mistakenly called an ECG last week) – appointment for 3:45, but I was in there and done by 3:30 pm.  WOW!  Talk about efficient medical personnel today!  I was astounded!

Sadly, there was not a printer hooked up to the ultrasound machine, so I was unable to get a picture (that I had promised to Julia) of my heart – I will be showing her an ultrasound picture of a heart online tonight instead. 

Originally I was set to have my next appointment for this coming Friday with Dr. B, but I realized over the weekend that meant I was starting the DRUG on Friday, and that freaked me out a bit.  I am scheduled to go to Huntsville for work next week to spend a few solid days with my team focused on some good stuff (they are mainly located there and I am here), and I didn’t want to miss that due to potential side effects. 

Side note: YES, I am concerned about my health.  YES, I want to get better and I want the CML to be eradicated.  However, I have obligations to my work and more importantly to my family, and part of my obligations to my family include me working and having a job.  Therefore, I believe that it is important to ensure that all facets of my life are “covered” before I begin this drug journey.

So, I called Karen, the research nurse, and asked her what the downside of starting the drug a week later would be.  She talked with Dr. B, and they both agreed that another week of waiting wouldn’t be a severe issue, and so I am taking the trek next week, going in for another round of blood work on the 11th, and going back on the 16th (EEK) to start the medication.

On the 16th I will either immediately start on the trial and either receive imatinib or ponatinib OR I will simply start on imatinib (Gleevec).  Karen and Dr. B are certain I will be accepted into the trial, but in the event not, then I would head to a pharmacy and pick up Gleevec.  Drugs, either way.

My next “head game” is gearing myself up for the potential side effects.  I learned last Friday that the most common are edema (swelling), nausea, high blood pressure, low blood cell count, rashes, fatigue, and joint pain.  Fun!  (There’s a drug for that.  Ha!)  I have no idea if I’ll have any or some or all or worse ones… so really, just praying and hoping for the best right now.

I’m reading The Philadelphia Chromosome by Jessica Wapner right now – SUPER FASCINATING!  If you want to learn about the history of blood cancers, and specifically CML, and can stand a bit of science and medical speak, definitely check it out.  No joke – I have Teenage Mutant Ninja White Blood Cells.  (They are ninjas and instead of kicking butt and fighting infection, they eat pizza all day.)

erin

Poudre

There’s something to be said for sucking at returning personal email (I’m sorry!  I do love you!) – emails tend to be overcome by events after some time.  (Again, super sorry!)  Tonight, avoiding another project, I started going through old emails, and I ran across this picture pre-Anna from March 3, 2012 – aww, my babies!

This was a trip up into the Poudre Canyon up near Fort Collins last spring when I was still very pregnant with Bubba.  Back when the girls still willingly wore pants and Raven let me put pigtails in her hair. *grin*

Update 6/28

Today I had an appointment with Dr. B at the Rocky Mountain Cancer Center; what I first learned was that the bone marrow biopsy confirmed what we already knew – I definitely have CML (chronic myeloid leukemia).  One of the neat / interesting (but not good) things I learned was that your marrow is typically 60 – 70% cells and the rest fat, and this reduces cell-wise as you age and increases in fat – well, my marrow was 100% cells, and that means the mutated white blood cells are crowding out the good.  They also did a test of my white blood cells and 17 of 20 had the Philadelphia Chromosome, which is one of the tell tale signs of CML.

All that being said, it was also confirmed that I am in the chronic phase (earliest), and being a newly diagnosed patient and being chronic, I am able to apply for the drug trial.  I filled out paperwork today (with Anna in tow), and Monday I go in for an ECHO, EKG, and blood work to start the trial.  I follow up with an appointment next Friday; I’m not sure yet when or what happens on Friday… we’ll just have to wait and see.

Thanks again to everyone for all of the well wishes!  Other than being fatigued regularly (which is a side effect of life, kids, work, and the CML), I’m doing well.  The fatigue isn’t going away any time soon and it’s been with me pretty solidly since March, so I’m already over it and have accepted it for what it is and move on anyway.  The prayers and support mean SO very much – thank you so much! 

Love,
Erin

A Random Mess

My head.

This is one of those blog posts that will be disjointed and rambling.  Lots of thoughts in my head, compartmentalized, and now I’m trying to bring them back out and form them into something rationale.  Always a good time.

This week has been strange for me in that I’m caught between having to make a number of decisions and yet am having others taken away, and that has been less than easy to deal with, and more difficult than I expected – I surprised myself.

As I mentioned in my last blog post, I should not get pregnant / have a baby while on the drugs for my form of leukemia.  Interestingly it’s not that the drugs make one infertile so much as there isn’t enough information on the drugs to know whether or not they would harm a baby (in utero), and this isn’t a chance one would want to take.  This led to discussions about different options, etc., but at the end of the day, it meant one thing – (most likely) no more kids.

When I first communicated this, many people’s first reaction was to tell me to be grateful that I had children – and three lovely ones at that.  This hurt, because it’s not that I’m not grateful that I have three beautiful girls – I’m beyond grateful.  My love and thankfulness for them hurts; there are no words.  My first response to these statements were to be upset / angry – no one wants to be told they shouldn’t have more children, whether they already have children or not.  But, as I worked through so many emotions this week, I realized that really, it was that I had a choice taken from me – one of many, and earlier than I expected.  It really wouldn’t have mattered if it was about having more children or anything else, really – it was having freedom taken away, the freedom to make my own decision. 

Thankfully a really close family member and I were able to discuss this yesterday, and we had a good chuckle about the fact that age often acts as the robber in that it takes these freedoms eventually.  It’s just that I have cancer to contend with and it takes more freedoms earlier than age would.

This loss of freedom – loss of control – bled over into many other aspects of my life this week.  Suffice it to say, it was a difficult week.  I’m thankful that at least I finally understand why.

I’ve made the decision to apply for the drug trial. You can read more about it here: http://clinicaltrials.gov/ct2/show/NCT01650805?term=chronic+myeloid+leukemia&recr=Open&rank=10.  Mainly, if I am accepted into the trial, a coin will be flipped, I’ll be given either Imatinib or Ponatinib, and I’ll be monitored for quite some time to determine if / how they are affecting me.  There are positives to this trial in that I will have a drug to treat the CML no matter what, the drug is free for the time I’m on the trial, and there are fail safes built in to ensure that my health is the primary concern.

I’ll be returning to the doctor on Friday for the tests I need to apply for the trial; depending on the results, I could start the drugs within a few weeks.  So, I am also preparing myself for what that could mean.  Each of the drugs has a laundry list of potential side effects and the doctor suggested that I will certainly experience some.  Books and blogs I’ve read also suggest that any side effect could be severe right out of the gate but in time could be overcome.  So, mentally I’m preparing for that, work wise I’m considering what that could mean, and of course, with the family, ensuring that we have the help we need at home.  And then there’s the possibility that nothing could happen and everything will be fine – who knows!  More mumbled mess in my head.

Generally, though, I’m doing okay – I have my rough moments, but that doesn’t take away from the sweet kisses of my kids, the snuggles, the messes, the day-to-day… it’s all still here and we all have a life to live despite that which invades it.

erin

Tattoo

So maybe I wasn’t completely of sound mind when I stopped by the tattoo shop after receiving the CML diagnosis yesterday, but I do love my tattoo, and it’s one I’ve been wanting for quite some time.  Each of the electrons represents each of my girls.

And so it goes.

Many of you might not appreciate reading this in a blog post for the first time; for that I apologize, as it’s hard to pick and choose who to call, text, or otherwise before I “tell the world”, so I chose very, very few.  It’s hard to write this, despite the hope that surrounds it, because it’s not fun news.  This week I received a diagnosis of Chronic Myeloid Leukemia.  Even now, writing that, it’s still a bit of a shock to me, but it is just that – one of the four forms of leukemia.

There are a lot of good resources to provide additional information (see bottom of this post), but I’ll sum it up here as well.

Chronic Myeloid Leukemia (CML) is a disease of the blood – technically a cancer – in which the bone marrow makes too many white blood cells.  These white blood cells are immature and don’t know how to do their job, but they also don’t die off.  Over time they can crowd out good blood cells, and so leads to more advanced forms of CML which can lead to death.

CML is typically directly related to a gene mutation called the Philadelphia Chromosome.  In that case, CML is one of the cancers that is best known and understood.  It’s not something that can be passed from parent to child, and it is “random” in that there are no known events that cause the mutation to occur. 

A little over a decade ago, CML had poor prognosis and typical patient life span was 5 – 6 years after diagnosis.  Today there are a number of drugs available that “fight” the disease, and thanks to those, patients can live a normal life span.  The drugs are taken orally, daily, until a person is determined to be in remission. 

However, unlike other cancers, CML doesn’t stage and remission is determined differently.  CML is phased, and remission falls under two different categories.  Patients mainly are caught in the earliest phase, chronic, and have a strong survival rate in that phase.

Besides the standard treatments, which are extremely costly, there are also clinical trials occurring to learn more about the disease.  Additionally, bone marrow transplant may be considered of a patient is unresponsive to treatment or has multiple relapses. 

That’s the skinny – you can read more at the sites provided below.

So… how this relates to me.

Back in February I got a pretty bad cold / sickness from one of the kids while I was away for the weekend, and it was really hard to shake.  About two weeks later, I got really sick – not stomach flu – but headaches, body aches, fever that wouldn’t go away, sweats, etc. – and I couldn’t shake it on my own – I was off work almost a week and a half and wasn’t getting better.  I went to the doctor multiple times and finally was given a drug that completely knocked me out for five days but also generally knocked out the bug.  I was told that I would start really feeling better after three weeks.

Thankfully my doctor asked me to come in for follow up blood tests.  In April, my white blood cell count was still high, but the lab attributed it to the illness.  However, when I went back in May, my doctor became concerned and referred me to a hematologist at the Rocky Mountain Cancer Center.  When I called to make an appointment, the first thing that was told me was, “don’t be scared of the name – it doesn’t mean you have cancer, this is just where hematologists tend to work for blood diseases”.  So it was all good.

About three weeks ago, I went in and met Dr. B, and he decided to draw a number of vials, but expected that he would have to throw out a number of them, because he didn’t expect to find anything in-house.  He stated that depending on his findings, he would ship those additional vials off to the lab, but he didn’t think my white blood cell count was high enough to attribute to anything.  However, by the end of the day, he called to tell me that he saw pre-cursors for leukemia and would be sending the additional vials for more testing.  He was shocked.  So was I.

Last Wednesday, when I was flying home from Boston, Dr. B called to tell me that he needed to speak to me right away.  I was able to talk to him Thursday morning, and he said that the further tests showed that I had CML and that I would need a bone marrow biopsy.  We scheduled it for yesterday.  Now, at the time, because of the reading I had done, I figured it didn’t really mean I had CML – that the biopsy would confirm that – however, yesterday, I learned different.

When I first arrived yesterday for my bone marrow biopsy, Dr. B and I met and he explained that I do in fact, have CML, and we discussed a number of treatment options.  My test results showed that 80% of my white blood cells that were tested (and they tested 200) showed that they were a.) leukemic and b.) had the chromosomal defect.  That made it very certain.

I go back in two weeks to decide on a treatment option for sure.  After that discussion, I had my biopsy performed, which, while it is not a walk in the park, definitely was not hard to get through (which is good, because I’ll be having a number of THOSE in the coming years).  The biopsy will show us which phase I’m in, but we aren’t expecting anything more advanced than chronic.  And so, despite the shock of having leukemia, the prognosis is really good, and that’s positive.

I have a lot of reading to do; Adam and I have a lot of discussing to do.  The 28th will be a big day because it’s the day I’ll determine my first steps in treatment, and every treatment option has side effects associated with it.  And, on top of that, we’re entering a new phase in our lives where suddenly plans have been upheaved and we need to sit and refigure things going forward.

I am still really tired, still have night sweats, etc., but generally all other symptoms had gone away.  I’ll have new side effects when I start the drugs, and I will be monitoring how that goes to determine if it’s the right treatment (besides the blood tests and biopsy results).  I will still work full time, still do things with my family, etc.  We’ll have to see how it goes and just take it a day at a time.

There are a lot of things I don’t know.  When I was at the clinic yesterday, I asked the few questions I had, but now I have lots more.  So, I will say this – please feel free to ask questions, talk to me about this, etc., because it will only help me figure out what I do and don’t know and what I need to ask when I go back in two weeks.

Things I do know – 1.) I shouldn’t have more kids on these drugs.  It’s not known how the drugs affect in utero babies, and yet, stopping the drugs to have a baby isn’t a good idea either.  I realize we have three beautiful girls and I am very thankful for that – but I will say this – there is a difference between deciding you don’t want anymore kids on your own and being told that you shouldn’t.  2.) I will most likely be on treatments for a very long time.  It could be a while before I’d be in the correct type of remission.  CML isn’t something that ever really goes away.  It’ll be something we’ll have to monitor over time.  3.) The prognosis is great and we’re not worried about whether I’ll live a long life or not.  4.) The drugs are really expensive.  This is part of the reason why I’m considering a trial.  The drugs on average are $120,000 a year without insurance, and while I’m VERY thankful we have insurance, we still have a 20% copay.  We’ll be weighing the pros and cons to make sure we make the best decisions for my health.

In advance, thank you for the love, support, and care you offer.  Right now we don’t really “need” anything – we mostly need to make a few decisions.  After I go back in a couple of weeks from now, I’ll be starting treatment, and that’s when things might start to change a bit and we’ll need a bit more from a physical perspective.  I’ll be updating the blog and FB regularly – if you don’t already keep me in a blog feed and want to make sure you get updates, you can subscribe or follow me by going to the main blog page, and you’ll receive an email when a new blog update comes out.

Resources:

http://www.cancer.gov/cancertopics/pdq/treatment/CML/Patient/page1

http://www.lls.org/#/diseaseinformation/leukemia/chronicmyeloidleukemia/

http://www.cancer.org/cancer/leukemia-chronicmyeloidcml/index

Long road ahead… thanks for the love!

Erin (and the family)