Tuesday, December 16, 2014

Facing the long day ahead

When a coworker is the one to remind you of your bone scan there is reason for concern.
I knew I had the test this week, but there was no part of my brain that cared which day and no part that felt the need to get organized.  Leaving work last night MS wished me luck on my bone scan tomorrow (today) and that is when I realized - I had not even cared when it was.  Is this a sign of exhaustion, becoming numb to the volume of medical appointments or complete apathy? I don't know, but even being here this morning I am somewhere between annoyed (I hate it when the treating facility asks me to complete a medication list!) and wondering if tears are just going to start falling.  I don't have any particular reason to cry, but I am that kind of tired.  When I feel like this I feel like a child.  You know, children cry when they are tired, not for any reason, but because they just can't be awake anymore.  And, while I am sure I could fall asleep with very few comforts, it is a different kind of tired - bone tired where no amount of sleep alone is going to resolve the problem.
I also feel an overwhelming sense of stress. I am stressed about medical test results, taking this chemo that has landed me in the hospital twice in the 3 cycles, Christmas gifts and visits with family, and work. Add to this the upsetting phonecall I got last time I sat in the cafeteria waiting for this test last time, and I think I would like to crawl under a rock right now!
I am going to be glad when this day is over.  And, tomorrow I am going to get back to being myself.  I am going to be happy and optomistic.  I am going to have hope and be excited about Christmas.

Tuesday, November 4, 2014

My experience with Herceptin, Prejeta and Taxotere

I am on day 20 of my first 21 day cycle, so me experience at this point is very limited, but not only is it good for me to think through the side effects of the drugs before meeting with Dr. J on Thursday, as a cancer patient it is invaluable to consult the experience of others to anticipate what a new treatment will be like or to check my side effects against what other experience.

Granted, no two people respond the same to these drugs.  Interestingly enough, two people with similar cancers can get the same drug and have some similar results and some wildly different.  I think this is puzzling and strange.  If two people take Tylenol the experience is similar.  As is the case with many other drugs - but not so with chemo.  So - if you are a cancer patient and reading this to see what it may be like for you to take these drugs - remember it could be different, and hopefully easier for you. 

When Dr J described these drugs she explained the side effects should me minimal.  Hair loss was practically a guarantee.  I have a sliver of hope still that I will keep my hair.  However, for the last week or so I have been feeling the hair loss start, and yesterday it began falling.  I suppose I will be bald again within 2 weeks.  I could begin a rant about how much it sucks to match headscarves to outfits 7 days a week, but instead I will speak out for the bald babies of the world.  So, being bald is cold.  Give your infants a break and put a hat on them all the time.  Even in the summer.  Having the sun shining on that tender skin hurts.  Don't assume your baby wants to be cooler by not wearing a hat.  Protect their heads.

Losing your hair  - what is it like?  When the chemo begins killing the hair follicles, which causes the hair to fall out, it feels like I have been banging my head against a wall or been hit with a baseball bat. If I touch my hair and cause it to move at all it hurts.  If I touch my scalp it hurts. The pain intensifies as the hair loss continues and my scalp is tender for a short time after I am totally bald, but it hurts less when the hair is gone.  However, within days of being bald it doesn't hurt at all anymore. Being bald is really cold in the winter though.  After I lost my hair the first time, whenever I saw a baby without a hat or cap on I would be angry. So, being bald is cold.  Give your infants a break and put a hat on them all the time.  Even in the summer.  Having the sun shining on that tender skin hurts.  Don't assume your baby wants to be cooler by not wearing a hat.  Protect their heads.

I have also been dizzy almost everyday, all day long since my first treatment.  Chemo can do this to varying degrees.  And, it has been like that for me.  Some days I am manage better than others and some days the dizziness causes nausea.  It is best when I don't move - just stay at my desk and keep my chair still.  But other times, like today, even laying down I feel like I am swaying and it is a challenge to accomplish normal tasks. 

My first treatment left me with awful headaches and nausea.  Nothing I had used in the past to treat these came close to stopping the problem, so I landed in the hospital.  That story is in a previous post,Biopsy results, Cleopatra study and totally bombing my first treatment

I am emotional.  I have cried more in the last 3 weeks than I have in years.  I swear it is true.  The other day I heard a song on the radio as I drove into work, "I loved her first" about a father telling his daughters new husband to remember that this woman is always going to be his baby and should be treated right.  My kiddies can't even drive yet, but I bawled for the day when I will have to trust someone else with the care of their hearts. 

My crap-o-meter is maxed out.  When I see something that isn't right I can't hold my tongue about it as I usually do.  While there are a couple personal examples of this I am not going to share them here.  One I will share is this, last night as we attended the National Junior Honors Society swearing in for my daughter they played the national anthem.  A middle school age boy was in the row in front of us.  He had some change in his hand and kept clanking it.  I wanted to stop his forcefully but I managed to just tap his shoulder and tell him to be quiet.  This coin-in-his-hand boy is a culmination of the emotions, headaches and crap-o-meter failures.

Basically, this regimen sucks.  I read about a number of patients with minimal side effects.  For me, this has been like going back on the hard chemo I took in 2006.  I have thought a lot about stopping cancer treatment all together.  If I ever need to make that choice I want to make it early enough that I have a decent amount of time where I feel healthy so that I can make the memories I want to outlive me.  I don't want to be in treatment up until the time I have no strength left and the only memories of me are the ones where I was sick, tired, dizzy and miserable. 

But, for now I am going to take it one treatment at a time.  I am going to get chemo this week which can be translated to, I am going to live beyond my means and spend money I don't have on drugs that make me nearly useless to the world and my family because, although I don't even have enough hope left to feed an ant others do.  I am going to put my faith in their hope and prayers because I want to be there when my kiddies choose someone to marry so I can warn him about the fear he will live with if he betrays their hearts.

Sunday, November 2, 2014

Medical expenses. Shocking.

I got a bill today and without looking closely I was shocked to see a 5 digit figure as my portion for my recent hospital stay. Because I had gone through another mountain of medical bills just an hour earlier (which ironically totaled $666) I couldn't handle thinking about that much money so I just walked away for a while. 
Upon closer inspection tonight I see it was not the bill for an inpatient stay, but for the biopsy that was done about a month ago. $12k+ for the biopsy?  $12k to tell me I am sick?  I hope when I call my insurance company they can make this nightmare (the bill) go away. 
Money and the cost of my cancer care is a subject I haven't blogged about. One reason is that I am a very proud woman. But, cancer is expensive. I spend more on medical care each year than our annual household income when my second child was born about 10 years ago. 
Socialized medicine, required health insurance, Obamacare... NEVER bring up those subjects with me. It will get ugly. 

Wednesday, October 29, 2014

Biopsy results, Cleopatra study and totally bombing my first treatment

This blog is long overdue for an update, and if I don't get this up then a huge chunk of this story will be lost forever.

At my last entry I was waiting to go in for a biopsy.  The biopsy went very well.  And, the results were conclusive.  But, there is a story behind that fact too, so let's just pick up were we left off.

I met with Dr. J 10/9/14. We reviewed the results of the biopsy.  The first test results to come back are the hormone test.  I came back estrogen and progesterone positive, as I always have. Next, the perform a stain test to determine if the cancer is Her2 positive.  (I have gone into detail on HER2 before.  You can read up on my post about cancer growth)  The stain came back in such a low range that they wouldn't normally perform a FISH, a florescence in situ hybridization, test. Dr J asked them to perform the test anyway, in spite of some teasing and questioning.  The FISH test came back clearly showing that the cancer is HER2 positive.  Good thing Dr J asked them to run the FISH, because if she hadn't I would have demanded it.  I have always known that as soon as we could run another biopsy we should.  I felt good about the treatment decisions we made, but never felt confident that the tumor wasn't HER2+.  

For those versed in the difference in protocols, it seems moronic that I would be happy with a treatment plan when it wouldn't address the HER2 status.  I can only say, I felt like both treatments were an option but I wanted to have a treatment that would allow me the most strength and fewest side effects at the time.  That would not have been chemo with Herceptin.

So, with the new biopsy information the visit concluded with a dramatically new treatment protocol.  (I really feel like I wrote about this before, but I can't find the post.  If you are reading this again, welcome to my mind.  Sometimes I don't know what has happened before and what is deja vu.)

I will be taking a 3 drug cocktail.

The first, Taxotere, a chemo that will kill off all the fast growing cells (cancer and hair a like) on a 3 week (or 21 day) chemo cycle.  Day 1 is chemo day.  Then on the 22 day we start at 1 again.  I get chemo only on day 1, unlike the last treatment which had chemo on days 1 and 8.  You can tell a lot about the chemo by the cycle.  Giving me more days between doses means that this chemo is tougher- it takes more time to get over it before your body can handle any more.

Secondly, I will go back on Herceptin.  I took this back in 2006 and responded very well.  The side effects I had then were uncomfortable but manageable.  In fact, I was driving myself to and from Utah from Idaho for this treatment. 

Finally, since 3 is better than 2, I will take Prejeta which works along with Herceptin for a synergistic effect.  These three drugs together have been tested in the Cleopatra Study, which you can read about here, here (very technical), or get the cliff notes here.  The great news is this has been a successful protocol for many metastatic breast cancer patients.  They are enjoying "unprecedented" 16 months without cancer advancement.  It is being called phenomenal and unprecedented.  Pretty fancy words when it comes to cancer.  I guess they don't mean as much to me, because they aren't the words I am living for.  I am living and fighting to hear the word - miracle, undetectable, we can't find any evidence of cancer.  I don't mean to sound like this study and protocol aren't good news.  It's great news.  I should be over the moon, but I don't have it in me to hope this is THE ONE.  Instead, I am going to follow the protocol and trust that one of these time God will grant me that miracle I am praying for because until that happens I am still going to die of cancer.  My enthusiasm is tempered and realistic.  I am not ever going to be satisfied with 16 months of hope at a time.  I want to be like the rest of you.  I don't want to know how I am going to die.  I want to believe it is reasonable to think I will live to be 80.

So, I left Dr J's office with this new protocol outlined.  I went to work getting myself psyched up and the children prepared.  I even attempted to get the house prepared, but without friends who filled the freezer with meals and planned for meals in the coming week I would have been lost.  Dr J and team went to work getting things authorized with insurance.  We made the appointment to begin treatment one week later. 

10/16/14 - This was my first long treatment without my mom.  I haven't had a treatment that took so long to administer for about 8 years.  I was grateful to be going into this alone.  I am healthy enough this time that I would have to watch my mom suffer as she watched me there.  I don't think I could stomach that again.  A child should never watch their parent watch them go through cancer.  It's hard to be the sick one.  
I went in to this treatment prepared for the 5 hours on IV infusions (forget that - it was more like 8 hrs) I had my hotspot & laptop, it was almost like being at the office.  I also had my hydration, hard candy and sunglasses for napping.  And, it wasn't like I was there alone, Enrique was with me.  He didn't leave my side once all day.  Notice the black bag?  Some chemo can't be exposed to light because… I don't know why… anything could happen I guess.  And, that was just pouring into my veins.  

Thursday went ok,  Friday went ok, Saturday went ok, Sunday … no bueno.  By Sunday night I was feeling awful.  I asked some friends to give me a blessing (A blessing given by a Melchizedek Priesthood holder, by the laying on of hands and by inspiration, to one who is sick or otherwise in need of special counsel, comfort, or healing. If the blessing is for the sick, consecrated oil is used (James 5:14-15) Learn more about my beliefs here. Within a few hours I was worse yet and called friends back again to stay with the children and take me to the hospital.  I got loaded up on anti-nausea meds and they tried to help with the headaches I was having.  By 1am I was home and in bed again.  Monday mid morning I was still feeling pretty pinky.  This would have been day 5 of my chemo cycle, and that falls right into the nadir point.  The nadir, or low point is clarified here. Another friend took me into the Dr where they gave me fluids, to no avail.  By the end of the day they wanted to close the office and I couldn't even walk out the door.  They arrange a hospital bed for me and wheeled me over to the hospital.  Remember a few weeks ago when I was down and just grateful I wasn't the person leaving on a stretcher?  Well on 10/20 I was that person.

I spent Monday-Wednessday in the hospital as migraine headaches and nausea kept me from being able to rest and rehydrate.  I had great nurses and doctors and I was so thankful to even more friends who visited, brought me soap and lotion so I could get rid of that hospital smell, and took care of my babies.  I was definitely sad to be away from the kiddies - it breaks my heart to think of them home and worried, but they were well loved and cared for.  But, what a happy day when they got home from school and I was there! 

It took the rest of the week before I attempted working again.  

Sorry, this isn't a very fun read, but it tells my story for sure.  If you have had chemo or wondered what it is like, this is a true case.  It is worst than most - usually a hospital stay isn't required. I know in my mind that when I go for my next treatment it won't be this bad because we know what to expect and I have new prescriptions to manage the side effects.  But, my heart is scared. 

I only know one way to handle this - just keep going.  As soon as I regain strength I add in as many regular activities as I can.  I don't look back, only ahead.  And ahead are a few more treatments (3 if things go great, 5 if needed) and an end to this chemo. I have also learned it is a waist to wish this challenge away.  I don't know if the next challenge (or chemo) will be easier or harder, so I am happy for what is good with this chemo. 

What is good about this chemo?  I am glad you asked, because this is a great way to sign off…
1. I have one down and know how my body will respond.  Now I know how to fight back
2. I have good friends around, and I need them! I will be asking for their help.
3. They are awesome at work. 
4. I have the best kiddies ever!  And, we are all under the same roof.

Sunday, October 12, 2014

How I imagine cancer growth

I picture little cancer cells in my body as having a squiggly outline, messy hair and enormous mouths.  I imaging these little monsters hanging out wherever they hang out a in my lymph and blood system, which look like a lazy river.  Each time a source of cancer fertilizer floats by their oger-like mouths start chomping.

This week, with the results of my biopsy, it has been clarified that my cancer is indeed Her2 positive still.  When the cancer originally presented 8 years ago the biopsy came back showing triple positive.

What is triple positive?
It indicates that the my tumors grow in response to the hormones estrogen (as in as many as 75% of cases) and progesterone (as in as many as 65% of cases).  The third + comes from being HER2/nue positive (as in 20-25% of cases).  Her2/nue, often shortened to Her2, is a more aggressive type of cancer.  This was definately the case with me.  

When my cancer was discovered there was a very large and palpable mass.  My Ongologist figured it was probably 10cm.  Between my first and second chemo I could feel one or two additional lumps.  So, in the course of a very short time I believe new masts were growing.  Luckily it was also very responsive the the A/C, paclitaxel and Herceptin regimen I was given. I didn't have any heart health issues which are possible with these drugs other than HBP that was easily controlled and has since almost reversed completely.

When my cancer returned about 3 years ago it was found in my bones.  While a biopsy was performed and extensive testing was done across the country, the results did not indicate the tumor was HER2+ any longer.

So, how did it go from + to - to +?  Bone tumors are very difficult to biopsy - it's a solid matter versus soft tissue.  So, it was probably HER2 positive all along.  In fact, even the biopsy this week failed to indicate being HER2+ in the first test - an ImmunoHistoChemistry (IHC).  Protocol would be to trust the results of the IHC.  But, luckily Dr J requested that they move forward with the next test, a FISH test.  (I say luckily not because I was lucky, but because if she hadn't I would have been angry and insistent that we go back and get the test done. I mean lucky for her since she didn't have to hassle with me.)  It's a little funny to say, "Yeah, I had a FISH test." I feel like I could follow that up with, "they found out I am a mermaid."

Since I was probably always HER2+ and the treatment protocol is different when they aren't treating HER2 I did receive 3 years of treatments that weren't as custom tailored to my cancer as they could have been.  It is easy to ask the question, what was the price I paid for not getting the HER2+ treatment for the last 3 years?  And I will never know the answer.  I don't have to know, because the treatment I received did a great job of keeping the cancer pretty controlled.  I had results that far exceeded average experiences.  I also was able to exhaust a long list of medications.  Had I been treated with a HER2+ regimen for the last 3 years I would have already cycled through a number of chemo therapies that I am just starting now.   Additionally, the drugs I have taken in the last 3 years, while not without side effects, have had side effects that were manageable and allowed me to work and raise my kiddies. 

As I have gone through treatment it has often been my prayer that I would have peace when the choices about treatment I made were good choices that would offer me the best balance between being a druggy and a mommy.  I have had a lot of peace over the last 3 years about the medical choices I have made.  I have been so blessed to know the questions to ask and have felt guided in what I have done.  Another case in point, after visiting with Dr J Thursday I talked to her about adding the bone treatments back into my protocol.  Not that she would have forgotten or not done it, but I am so thankful to know what I need and be able to ensure that my medical team is giving the best of everything I need. 

from the Perjeta website homepage
Starting this week I am going from my 30 minutes of medication (which requires 2-3 hours at the doctor) to a 4-5 hour infusion.  I will go from pre-meds (the anti nausea meds) and a 5 minute injection to premeds, bone strengthener shot and 3 chemo treatments.  (technically 1 is a chemo and 2 are monoclonal antibodies, they are often referred to as chemo, side effects are more mild than many chemo drugs) I will go back on Herceptin, which I took before and had good results with.  I will add perjeta, which from the website looks like it may turn me into a cat. And, to round out the cocktail, taxol. Taxol is a chemo that stops the division of cells, thus making it impossible for those hairy little monsters to divide and grow.  And, because it stops the division of fast growing cells, all fast growing cells are going to get beat-up including hair, nails, gums and the mouth in general, GI track and blood cells, etc.

So I will probably become a hair-less cat. Yes, this is the 3rd time I am loosing my hair this year.  I lost it right about Halloween last year, I remember thinking I should be a pirate.   And, It will probably be gone before the first week of November ends again.  This year I am considering something permanent to decorate my perpetually bald head.  To keep from going on and on about how much I just want to grow long, dark, thick hair I am going to close now.