The state of me and girls names that aren't the names of girls

I have been off chemo since December.  It didn't start off as a plan to be off for that long, but there were the holidays and then I started having such intense back pain we wanted to get under control.  That pain became debilitating, traveled down my leg and progressed from numbness and difficulty lifting my leg into the car became an inability to walk without focused effort and excruciating pain.
One Monday I was in bed when a friend called.  I had been crying and praying for help when she rang. I answered the phone in sobs.  She dropped everything and took me to the ER where a lot of drugs and a couple of follow-up appointments later I found out the cancer spread to the nerve endings in my spine.  I began radiation and got relief within days.  My leg is no longer numb.  I can lift it again and have recovered a significant amount of strength.  It is truly miraculous to me how quickly I went from traveling across the country for the holidays and then work to being unable to get out of bed and then was back to work again. Another proof-case for the need to enjoy every good moment of your life, and treat all of them like they are good because tomorrow may be so rotten you will wish it was today again.
All this time off chemo has given me so much to be thankful for.  I could say it shows me how much I have been missing, but that just sounds sad and makes me feel low.  I prefer to see the glass half full. 
I have hair.  It took about 2 and a half months to grow enough eyelashes and get them thick enough that they brush on the lenses of my eyeglasses.  I also went in and got a haircut - something I haven't done in about 2 years with the exception of having my neck trimmed once.  I loved it even though I knew I would be loosing my hair again soon.  That day it needed cut and I just enjoyed that experience rather than debating if it was a waste of time and money. Living for the now!
I have also had a different parenting experience lately.  More energy and strength means more normal activities like running errands and crafting and cooking.  I forgot I liked to cook.
My entire body feels different than it has in a long time.  Is this how the rest of the world feels?
But, the chemo-cation is about to end.  T minus 1 day until they start dripping the next hope for NED (no evidence of disease) into my veins.  I have been reading up on all of the studies again.
I have read about Marianne, Th3resa and Emilia - all girl names and none referring to a girl.  These are drug studies for chemotherapy protocols for metastatic breast cancer treatment.  My most recent regimine, Herceptin + Perjeta + Taxotere, sent me to the hospital for vomiting 2 out of the 3 weeks I was getting treatment. I also had migraines and dreaded simple things like walking from the car to my office.  We are now looking to switch to Taxol with Herceptin and Perjeta if it is approved by the insurance company. 
A few weeks ago I took the Herceptin and Perjeta without a chemo agent.  I still had a migraine, though much more mild - only one day - and I recovered to a near normal energy level after 2 days. 
Anticipating what will happen with this round is stressful.  What will I feel like, will it be manageable, and if not, how bad will it be?  I don't think the kids can cope with Mom staying in the hospital again.  I don't know if I can cope with feeling rotten after feeling so good.
So, I know the anxiety will grow over the next day and a half.  But, I also know that God is with me - He is in control and has the power to see my little family through whatever is coming.
So, in spite of the nerves and unknowns, I move forward with conviction and gratitude that I am not alone.
God bless us, every one.
Kel

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.

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.

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. 

Meow.

Waiting makes me stir crazy

It's treatment day! And I have one Cheon complaint. The number of hours it takes and the number of times I have to move from chair to chair. I hate inefficiency and the whole afternoon is a long series of work-arounds. 

I arrive and sign that I am here. I sit in the waiting room. They call me back to the registration desk so I can pay to be here. I sit in the waiting room. They call me back for lab work. I sit in the first chair - the vitals chair. I get up to get weighted. I sit in the vitals chair and they get my BP and temp. I wait. I move to the second chair- this is the chair were they access my port- much like a centr line. I wait. After sitting in chair 2 I walk back to the doxtors area and go to that triage room. Check-in. Move to the doctors consult room. WAIT. Meet with said doctor. Wait for lab results. Sit in an all-together new chair for chemo. Wait on labs some more. Then wait for the pre meds to be mixed. Get the IV started. When that finishes I wait for them to stop the beeping machine. Get chemo. Turn the IV back on for a flush. Wait for the nurse to remover the port access. Go to the check out deal and wAit to schedule the next appointment. 

Finally I am paying for 4 hours of parking to cover 10 minutes with the dr. 30 minutes of IVs and 10 minutes of chemo.  

I HATE INEFFICIENCY. 

Tx one is done!

Today was my first day of Erbulin. Of course I was a little anxious about how the new chemo would go, but I have been pretty busy at work and consumed with enjoying the week off chemo. I really only had pockets of time when I could worry about it all. 

I started with the general blood draw and then met with the doctor who wanted to be sure my questions about the chemo were answered. I talked with the office nurses about some alternative/complementary medicines. Then headed back to the chemo pharm. Shortly after there was a tornado warning so I had to move to an interior-wall chemo spot. That will make it a memorable day. 

My pre-meds still cover nausea, but don't require steroids anymore. That means I may not end up with the munchies. The chemo, 6.2 cc, is an IV push.  A push is administered with a syringe into the IV along with saline. 

Today's push started out a little shaky. I have some strange vertigo for a second. We had to pause for a minute and be sure everything was ok. Everything worked out just fine. 

I even came home and went to the gym for a while. I am going to fight this cancer and the chemo side effects intentionally. 

Wish me luck. :)

New plan, new chemo, new day

I am so blessed! Thank you for your constant compassion and support.  Thank you for the prayers and concern.  I felt more empowered with each note of care and encouragement.  One of the greatest blessings of cancer is learning the value of family and true friends in a way you never would otherwise.  I treasure the relationships in my life immensely.

You should know, I enjoy the time I spend with the staff at the oncologist.  I decided long ago that no one lets their friends die, so I make sure everyone in the office knows I am a friend.  There are a lot of laughs and it is nice to keep up on what is happening in their families.  So, when you think of me going to the oncologist you don't need to feel sad.  We really make the best of it.  For example, if you stand on one foot with one foot and the other foot extended far to the side when stepping on the scale- as long as you capture the first weight that shows, before the numbers bounce around a little, you can come in 3-5 lbs lighter.  The nurses laughed when I tried this, but it worked.

Now, about the most recent visit: I am almost able to predict the entire conversation Dr J and I will have.  I got it right again this week.  Thursday we decided that it would be pointless to take chemo which may not be effective.  So, I got a week off (YEAH) and we ran the blood through the CA27.29 test - which determines the level of ones tumor markers.  Results came back on Friday and show an increase again.  So, Abraxene is no longer an effective chemo for me.  I am moving to the next option, Eribulin, which you can read about here.  I think I need to send some new banner suggestions to the company.  "Put time on your side" with a picture of a old cancer patient isn't very appealing.  Also, the copy is horrible.  It tries to encourage by telling me that in clinical trials (older women with metastatic breast cancer) live an average of 13.2 months compared to those treated with other therapies, who lived an average of 10.6 months.  We aren't looking for months live, but treatment cycles without tumor growth.  Every other research study I have read talks in these terms.

To be clear, we are not fighting for the last 10.6 months here friends.  I will use Eribulin for a long as it is effective.  Over time tumors build a resistance to chemo-therapies, hence changing all of the time.  When I develop a resistance to this one there are a myriad of others and we will keep cycling through.

I feel that my prayers were answered.  Dr J and I discussed a laundry list of topics on my mind.  I also feel that this is the right step.  It sure isn't the step I would like to be taking.  I want to be telling you that I was miraculously cured - something that happens in about 2% of cases like mine. 

I am, however, happy to tell you that I am blessed,  I am loved, and I am thankful.  And, life is normal.  I am off to pay rent, shop for a graduation dress with my daughter and clean out closets.  I bet dozens have the same, or similar things on your list of things to do today.

Bummer test results

Up and down, exciting then scary.  Cancer, and the tests to determine whether the treatment or disease is ahead, is like flying on a roller coaster.
In the last week I have been so anxious to get the latest results of my blood tests back.  I was worried that my tumor markers wouldn't be where I was sure they should be.  I was also looking forward to the discussion about if it was time to stop chemo.  I was completely prepared to be excited and argue that an extra round or two would be smart - just for insurance.
My tumor markers had been trending down, I was sure last month they would drop off.
Clearly I have lost touch with my inner health compass.  My markers went up 30 points. 
OK, so now what? Well, I asked that the blood drawn this week be sent in for the tumor marker test so we can see if the last test was a fluke. I don't think it was a fluke, but it is what the drs and nurses always say. 
So, we are testing the blood so the doctors and nurses can prove that the change in my tumor markers aren't from a faulty test and to determine if it is time to change our treatment plan to a new drug.
What to wish for... what to wish for... I never wish to change drugs, because I know what is happening with the drug I am taking.  I know how my body is responding and how sick it does or doesn't make me.  A new drug might be better or it might be worse.
I am also trying to understand God's will.  Am I never to be NED?  Am I always going to be actively fighting cancer?  When and how will this fight end?  Do I dive in and give everything I have every day, trying to squeeze every moment of joy or parenting success, or do I hold back and plan to use energy over the long run?  How will I be most proud of how I lived?  Which will give my kids the best memories of their childhood?  Which is best for my career?
First I think: I am really not that sick.  I don't have tumors on my soft tissue.  It isn't in my brain.  It isn't on my kidney.  I have lots of systems functioning very well.  Second: I am getting so run down.  I am tired and don't spring back from set backs with much agility. 
So, who am I these days?  Am I a fighter or survivor, living with or running away from cancer?
Which of us has the upper hand?  Which of us is about to fly down a hill only to have to climb the next?
Such deep thoughts, I want a nap.

Got the Flu.

I have caught something- no fever yet, but aches and chills make a hot bath feel like taking a polar plung. 

I have an appt tomorrow with my onc, thankfully. I don't think I will be getting my treatment again this week, but hopefully she will have something to get me on the mend quickly. 

Physiological consequences of drugs

When I was getting chemo the first time around, 7 years ago, I remember getting into a chemo recover routine. Part of that routine was to walk outside, even if I could only walk 20 steps put the door and then back to sit and rest for a few hours before trying again. The exercise was good to help work the drugs out of my system. And, being outside was very healing.  Without fail, while walking hand in hand with my mom or dad, because I couldn't manage 40 steps alone, I would cry.  I didn't have anything to cry about.  I was not upset.  The drugs just made me emotional. 

Fast-forward 7 years. I had a PET scan yesterday. Those drugs also have some emotional side effects. I was so frustrated last night and this morning. After dropping the kids off at school I cried all the way in to work.  It is not like me to cry, thanks to other drugs, so I had to ask myself what was wrong. I know, most people reading this are saying to themselves, "you have CANCER, what else do you need to make you cry?"  But, for me saying "I have cancer" has the same emotional weight as saying I have brown hair, or I have blue eyes. It is just a fact because I have had it for so long I don't know anything else so I can compare it to anything else. And, trust me, cancer is not the toughest trial in my life. 

So I had to ask myself, what is wrong?  As I formed a list so that I could decide how to handle each problem and I can get back to being dry-eyed I began to cry harder. I prayed, "how am I supposed to handle all of this? I can't!  Not wonder I am losing it!" 

Why is life so hard right now? Several of the things on my worry list aren't things happening to me, but to people I love. It is hard to know they are struggling or facing medical problems, surgery, or Christmas without much to give their children. 

What kind of world do we live I when one of the top stories on CNN today is about a "ghost party" - a group of teens stake out a mansion where the owners aren't home and throw a party in their pool. The party escalated to breaking into the home and stealing things, amoung which is a $250,000 stuffed snow lepord. People aren't able to scrape together a few hundred dollars for Christmas gifts, or even a few dollars for other basic needs but there are stuffed animals valued at more than the cost of many American's home being stolen by kids? Or the other CNN story that aired during my treatment today. This story educate viewers about a new word.  A medical/mental condition coined as Affluenza.  Affluenza is actually on condition in which a child comes from such comfortable financial means that a judge found him unable to take responsibility for getting rip-roaring drunk and driving his truck into 4 other people and killing them.  In spite of being 16, this is not his first serious offense (opinion) while intoxicated.  Last year he was found in a car with a naked, drunk, passed out 14 year old girl.  Financial wealth is now a legitimate defense for manslaughter. 

I am not proud to live in a land where people can be too rich to be punished for killing others. I am patriotic, I love the soldiers in the military and reverence theincredile personal sacrifice they make to defend Our constitution and to sand against exploitation of others around the world.  I consider myself a Republican, but when it comes to the class system I have been warned about sounding like "one of chose Democrates". I think it is about being Christian and humane.  

Hard work should be rewarded. I like the idea of working hard and earning something extra for it.  Heaven knows that is my goal. I work full-time, making up for time spent in cancer treatment by always having my laptop at treatment along with my personal hotspot so that I can give my employer a full days work. I work extra hours in the evening or at night to assure I give them my best work. I then work additional hours freelance because I love the dear friend that asked me to take the job, and let's be honest, I am a middle-class, single-income, single-parent who supports my family alone and I am financing stage IV cancer treatment. Middle class living requires more than one income.  I expect to have more for my work than those who are doing less.  I want to be rewarded for specialized skills I have honed.  They cost me time, money and commitment to offer them to my employer. However, I do not believe that my value to the company is only 7% of the CEO.  The value of those who keep the restrooms clean is not a fraction of the value I bring.  How valuable is a clean restroom to you when you need to use one?

I am not suggesting socialism, but far less disparity. When a subset of the group is told they are hundreds of times move valuable simply because of which job they do or how much money they make we are setting them up to believe they can get away with murder. 

Wow- I have a lot to get off my chest.  And, CNN stories are the safest of all the things on my mind to vent about.

Back to my point- Drugs mess up that part of your brain responsible for your emotions and tear ducts. DON'T DO DRUGS!  

I know some of the readers of this blog are friends.  I know you are going to want to know how to help me.  You don't want to know that I cried my way to work without knowing how you can help.  My answer is there is nothing we need.  I don't know if it is accurate, but it is honest.  I don't know what to ask for.  I know that I am so blessed.  I have a good job.  I can feed, dress and provide a warm house my kids with far more comforts than they can enjoy every day or clean up every night.  I have friends and family who love me.  I have the miracles of a most gracious Lord.  I know God lives.  He loves me.  He knows me personally and know the troubles of my heart.  He has put this path in front of me and told me, by faith and hard work, I can do this.  His Son, Jesus Christ, came to earth as a Savior for all of us.  I have all I need and so much more.  Thank you for your love and concern for me.  You are one of my blessings.  I just needed to vent and tell someone I am not ok with some of what our society is now calling acceptable.  

Merry Christmas! I hope we are all able to see more of the actions that support or values in the acts of those around us than we can see on CNN all year, And especially now at Christmas time.

Cancer can't stop good

Because, deep down I think we know, all the bad things that can happen in life can't stop us from making our lives good.

I hope you will check out this commercial from Allstate.  I love the wisdom because I beleive - even though bad things happen good things can come from them.

A couple of weeks ago I decided to treat myself to a Spiced Apple Cider (Yummy!) at Starbucks inside Target with a gift card I had received.  In spite of wanting to get home I  waited in the slow moving line for my craving self.  As I waited a little white knight came into my day.


(a white knight is the term I use to describe the miracles of cancer, it comes from my favorite Onc nurse (Lisa at Utah Cancer Specialists - Layton) helping me learn to visualize my healing as she pumped evil chemo into my veins and told me to imagine armies of white knights marching through my body slaying cancer cells)

Behind me a man asked to be forgiven for getting personal, "I noticed you are wearing a turban and I assume it may because you are getting chemo."  (Oh, I am getting sick of looking like cancer.  I wore a long red wig and false eyelashes on Black Friday when I took the kiddies to the mall and no one looked twice or had the look of compassion in their eyes.  As far as anyone knew I was insane for going to the mall - wait, they are insane for going to the mall.  It was nice for ALL of us to just be normal.  But, if I was normal I wouldn't be able to bless the lives of people like this white knight.)  He really didn't need to know what I would suggest to get through chemo.  He needed to tell someone who understands - I am starting chemo in 2 days.  I am scared.  I am supposed to get on a plane two days after that.  I don't want my life to stop.  I don't want to hold myself over a bucket for days.

WHAT IS GOING TO HAPPEN?  PLEASE - TELL ME THE DOCTORS AREN'T LYING.  TELL ME IT WILL BE OK!

And, luckily I can tell him IT IS GOING TO BE OK!  You can get through chemo.

I am so blessed to be able to help others get through cancer, in some little way. I know how much someones help means and I am grateful to make the road easier for someone else.

I have just learned that a person who has become very central to my life has a relapse of cancer.  It is a rare cancer, if I am correct it is called Pseudomyxoma Peritonei.  It is a terrible rare cancer with minimal research and less understanding for treatment options and a cure.  For everyone who has prayed for me, please pray for my friend, I am leaving the name out for privacy sake.

Dear friend - know that Cancer can't stop us from making our lives good!  God will brings blessings he could not have offered without the (rotten) circumstances cancer brings.

Make life good!
Love - Kel

A down week

Tomorrow I have to go back to the Chemo Pharm, or as one patient called it last week as I was leaving Purgatory. I am just not feeling very well though.  Usually I am feeling pretty good 2-3 days before I go back for more chemo, but this week I have just dragged and dragged.  Today I even worked from the comfort of my bed much of the day.  I am anxious about getting another dose of meds tomorrow.  Will it knock me down more? Am I getting sick, and if I am what will the drop in my white blood cells do to me?  Oh bother!
It's time for Miss Gae's thankful game.
I am so blessed.  I have the sweetest kids, I love wearing my cozy jammies and - lucky me - my mommy made me a chemo blanket that is so warm.  It really is a genius invention that she created when I got cancer again.  She knew what I would need to make it more comfortable. I have a good job with great co-workers who are very understanding and a company that respects employees who balance getting their work done and managing life.  And, I love my iPad.

Boom!

Thank you chemo. Knocked my blood markers down by half this month. I have lost some battles but gaining ground in the war. 🎉

Oops! Is that my car out of gas?

IT IS LAUREN'S FAULT!!!!

Even from 1,500 miles away she is making me run out of gas!

I was rushing off to my chemo injection, trying to make good time because I was a touch behind.  I lost track of time while working, but I was still going arrive within 5 minutes of my appointment, so I decided to just get gas after.  I mean, it is only 4 miles.  Just as I prepare to change lanes and circle around to the connecting interstate my car began "running" silently. 

Part 1:
"Oh, no.  Really?  Come on, just go a bit further.  Oh stop honking, can't you see I just turned my hazard lights on?  Do you think I wanted to a rest stop in the middle lane of the tollway? Just a little farther.  YES!  I can pull of there."
Calling mom, "Hi.  Can you help me?   I need gas."   I really hoped mom would just bring it.  But, nope, she brought dad.  He is not going to be happy about this. 
Gas can emptied into tank.
Give him something to think about besides how stupid it is to run out of gas.
"Well, would you like some chemo?" 
Dad: "What?" 
"I am going to go get some chemo, but I will share."
Dad: "Uh, maybe see if your mom wants to go."
Mom decides to come and we get int the car.

Car won't start!?#!
Stop Dad from driving off.
Dad jump starts the car successfully after 2 tries.
After gathering Mom, Dad, 2 NTTA Customer Care Car Service guys, zip off to the hospital knowing full well that if the battery was too dead to start right up on one try it isn't going to start after chemo when I have to rush off to take on of the kids for a check-up.
Decide I should have been shopping more aggressively for a new car.

Part 2:
Enjoy my soapy, internally cleansing Abraxane, laugh with Nurses H and C, tease Nurse S, and tell Dr J that this chemo is sooo much easier to manage than the Zeloda.  Check out the green smoothie the other nurse is drinking and compare recipes.
Zoom off to check kiddies out of school to get to the check-up I know will include 2 hours of waiting. 

Part 3:
Running tight on time so I am too hungry to stop for a 2:30 lunch.  Luck me, the check-up was lickity-split.
My mom is preparing to start a specialty baby blanket e-store.  She makes the sweetest cuddly blankets with crocheted lace edges.  She has designed her own edges.  They are
the most beautiful gifts.  I loved having them and love it even more when I get to give one to a friend.  
I will be creating the website so we begin to talk marketing.  Kiddo #2 comes up with an awesome name when the rest of us are too stumped to be creative. 

Part 4:
Finally, most of the most time sensitive tasks for the day are out of the way.  I ran into an old friend I haven't talked to in years.  We were just getting caught up when I had what my daughter called a "911 bathroom emergency" when she was in kindergarten. 
(Some of the details of chemo are less glamorous than the movies make them out to be.  It isn't all sweaty vomit and grey skin.)
So, it is about time to call it a day.  Only 6 more hours of things to do.  Soccer, getting everyone in bed, work for a couple hours to make up the hours I was stranded on the side of the road or hanging out with half of the medical population of Dallas.

Conclusion:

Who would have thought that the chemo would be the easy part of today?  

Abraxene #1 Done!

I had my first round of Abraxene yesterday. It is a ow dose, slow drip chemo. Because I am on a 3 week on 1 week off regimen it is only 100 CFCs, if I remember correctly. They premedicated for about 20 minutes with anti nausea (which worked beautifully) and steroids ( also worked - I craved food all night). Then the chemo dripped in over 35 minutes. They slowed it down for the first round to see what my body would do in response to the new drug. My body watched Dr. oz and Castle. How cool to watch mid-day TV. 

So- it was pretty slick. I think next time I will take my laptop and do some work. I was away from the office for longer than I expected, and work doesn't stop just because you get chemo. Since I am we'll enough I will work at the pharm and save time off for when I need it or to go on vacation. 

Hydration and a positive attitude will be key the next few days to keeping my energy and health at the best levels. 

Getting Ready for Chemo

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Tonight is the night, I am starting chemo again.  I decided to write a practical post about preparing for chemo for any readers who are trying to navigate cancer themselves.

  

Are you starting chemo soon?  If so, you have heard this: “How can I help you".  It is so hard to answer, especially if you are feeling overwhelmed by a new diagnosis and intense medical care.  The smartest thing is to come up with some answers.  People will want to help.  Ask them to pick up a couple things you will need so you can save your energy or use it in better ways.

Here are a couple ideas:

• laundry soap (I asked for Tide free so it would be gentle)
• sports drinks
• crackers
• canned soup
• a book/magazine  
• (Note: all these foods can go into the cupboard to be used when you need them) 
•  Got kids?  Make arrangements for someone to take them to a specific activity – if someone takes them to soccer practice every week you don’t have to think about it.  Then, if you feel up to joining – you can ride along. 

Stock up on some comforts for yourself

Today I went to the big-box store and bought extras of some staples plus a few things I think I will want if the chemo makes me feel punky.    

Get sports drinks – the electrolytes are going to help so much if you loose your appetite.  Also, being well hydrated before a treatment will help the chemo move through your system better.  I can’t prove that with science, but I lived it, for what that is worth.   

Get some simple foods; no spice, easy prep, no chewing.  If you get really tired from the chemo you will be so happy to have a quick bite if you feel hungry.  Mashed potatoes and rotisserie chicken always hit the spot for me after chemo.  Think jell-o cups, rice, soup, and crackers.  I also got over-the-counter remedies for some potential side effects of the medicine – ginger ale (yup – that’s medicinal sometimes) and something for loose bowels.   

 PS – ginger is good for a sour stomach – you might pick up a box of ginger snaps.

Feed the family: I bought some easy meals for the kids to make.  Simple meals, snacks, cold cereal – these things keep the world spinning if mom gets sick.  I am so fortunate that my kids can do some meal prep.  Warning: You may not like the smell of cooking food.  Cold cereal, pop-tarts, and juice boxes might be as important for you as the kids. (no smell)

Get your body ready and already gave you my first bit of advice – GET HYDRATED!  Get water, PowerAde, juice, anything in your system.  Really focus on water, but use something else if it tastes better.  Hydration will make injections better.  It gets the medicine into your system better and gets the toxins out better.  (You want to dilute that chemo for when you make trips to the restroom.) Hydrate, hydrate, hydrate.

Give your body protein to rebuild the good cells that are being killed by chemo.  These friendlies are going to take a hit right along with the enemy cancer cells.  Help defend them.   

Get veggies – they have nutrients that are going to keep you going.  

Get some simple carbs – you will need fast energy for when you are only up to a couple bites every couple hours. 

Eating during chemo – anything you have an appetite for is good – if you want Egg McMuffins, eat ‘em.  If you want pasta, eat it.  If you want apples, bite in!  Chemo is not the time for self imposed restriction dieting.

If you have tips of your own, please share!

Women with Cancer: Your Mind on Chemo

Women with Cancer: Your Mind on Chemo: Mentioning chemobrain to a group of cancer survivors is the equivalent of yelling "FIRE" in a crowded theater.          

Read the link above if you would like to learn more about what some chemo survivors face.

CA27.29

This chart shows the last 3 months of tumor marker tests.  There is a slight increase in the result in January- the result for this month will be available in a few more days.  I think it looks ugly.  I didn't want to see the climb- an increase in the tumor markers in my blood, but the Oncologist isn't concerned.  She is looking at the trend, and looks to the scientific bright side, even if we stop getting the desired results with the current regimen, we have chemo. ~I guess the optimism is based on one's point of view.  I may have to adjust my thinking, but for me, chemo would be a defeat.  

Honestly, this treatment is getting harder on me too.  My feet hurt along with the ankles, other joints and bones this weekend.  I probably should have stayed home from the birthday party at the zoo, but I really wanted to be with my kiddies to celebrate ones b-day.  

So, I had treatment this week.  I got through just fine, but I am so tired and in pain.  I am going to try to handle with something brilliant, I just have to think of something brilliant.  In the mean time it will be heat packs, pain meds, and counting my blessings.

I am blessed because...

1. Got some laundry done today

2. Enjoyed a delicious weekend with pizza and cake

3. Family - love to hear the stories of little nieces and nephews over the phone, zoo parties, and kiddie hugs

4. Hot cocoa

5. Sweaters and slippers

6. Hair long enough for pony tails (hope I don't loose it because I have to take chemo again)

The look of Stage IV Cancer

I have read a variety of blogs and comments about how stage IV cancer patients look. It is often confusing to friends and family to see someone with cancer. There is a hollywood image of cancer patients that is a little scary looking: a hollow look, grey-ish skin, bones protruding from an incredibly skinny body, etc.  But, cancer doesn't always look like that; often cancer patients look so average, well if the hair thing doesn't tip you off.
With many chemo cocktails used to treat Breast Cancer the anti-nausea drugs and those given to prevent a reaction include steroids.  Most breast cancer survivor blogs I read include discussion of treatment weight gain from steroids.  So, there you are with cancer, and plumping up like the goodyear blimp.
Cancer treatment can also change your taste buds. Plus, eating healthful foods becomes more important as you are trying to fuel your immune system, and your appearance improves.
In fact, when I was being treated the first time, after I found a good medical team, I think I looked pretty good.  Here I am with one of my sisters.

Me and My sister- first time in treatment - 5 years ago.

This was pretty early in treatment. I had lost my hair (obvious, right?) but still had some eyelashes. My skin still has a glow and my eyes are bright.  I really good wig and some false lashes I could have fooled most people about my cancer.
I am looking pretty healthy now, and friends are often surprised saying I look better than they expected.  I am glad to hear that I am looking pretty good, thank you.
I think this is due to several things: help from family, focusing on getting more fruit and veggies, which as been easier with the green smoothies, and the fabulous meals our friends have brought.  I love it when my friend, a nurse, brings nice meals with a focus on fruits with antioxidants.  She is so thoughtful to include that little boost to help.  I have also been tremendously blessed in many, many more ways.
Of course enjoying a LONG weekend is really good for everyones health.  I bought some new jammies for the kiddies this weekend, super warm ones along with slipper socks.  They were so cuddly warm they even slept in!
Stage IV cancer can look so average.  Depending on the current treatment, how long you have been in treatment, your support system and other factors, a cancer patient can look like any one out there.
You probably don't feel like an average person though.  I feel like I'm walking a fine line between wherever I am and a really bad prognosis.  I am sure I will get well this time, there is zero question in my mind that I will be NED (no evidence of disease), but I am not sure if I will get there on this treatment or if I will have to use chemo.  I am hopeful but nervous.
I don't know if or when the doctors will find new tumors.  I hope to be into the next decade of my life, maybe even older before I am told that I need treatment again.  I hope if the cancer comes back it will grow someplace less vital to my wellbeing- like my bones, as compared to my liver, lungs or brain.  But, for now, I have to stay the course.
I have a test on Thursday.  Hopefully the results show there isn't an increase in the tumor marker, or progression of tumor growth.  Then the next test, in a month, should show a drop in the tumor markers as the treatment drugs will have had time to attack and act on the tumors.  These results would show successful response to the treatment.
I will have monthly blood tests to pass, and every three months I will have bone scans to track the activity (and as time goes on, lack of activity) in my bones.  What we want is for this to take me to the point of no activity or NED which is theoretically guaranteed with my current diagnosis.
Once I reach this point I just hold on, with a hope and prayer, for as long as I continue to be NED.  Maybe when I get rid of the tumors in my bones I will start introducing myself as "Ned"because I will be proud to have that diagnosis as long as God will let me keep it.
So for now, I will use positive thinking, guided imagery, and all the drugs the onc and I agree will help.  I am cleaning the trouble and stress out of my life so my body can use more energy to making me well.  And, I am going to enjoy Christmas.  I love Thanksgiving- because it leads into Christmas and it is also the feelings of Christmas without the distractions.
Celebrate with me!  Count your blessings, make your life more positive, and enjoy what life has for you right now.
Love, Kel

The Most Important Decision!

Whenever you are facing something life changing decisions of enormous magnitude that must be calculated and committed to.  Some people make these commitments easily and are open to coarse correcting decisions along the way.  Others, like me, struggle to know the single option that will lead to the exact outcome desired.  We play out scenarios in our minds from beginning to end, calculating the risk, weighing the results.  We are "slow" to commit. For me, it is because I feel that the decision I make is a life long commitment.  I am not a changer, I am a keeper.  For scientific-deciders like me, a course correction feels like a defeat.
I don't know which way is right or which way is wrong.  I don't even think there is a right and wrong way; decision methodology is just a way of being.  It is part of our chemical make-up, at least that is what I believe as I compare myself to my siblings and compare my kiddies to one another.  Some are doers-and-changers, some are one-timers.
No matter which type you are, when it comes to your healthcare team, especially your oncology team, you MUST be a doer-and-changer.
Think of yourself as the CEO and President of your health.  You hire a medical team on a right-to-work basis- meaning you can hire and fire at will.
I don't mean that you should change healthcare providers as you mood or side effects change.  But, you are going to pay handsomely for their services.  They are selling you services.  If you aren't getting what you want- make a switch.
Think about it.
If you were getting a new hair stylist you would try someone out once.  If it seems to go well, you will be back for a trim or root touch-up in 4 to 6 weeks.  Still looking good?  Hopefully a little better than last time even since they are getting to know your hair and style. We are now considering a long term relationship.
But, if you had a questionable first experience and the second visit shows you are going down hill fast would you really go back again?  Not even I would be that committed!
The same goes with your healthcare team.  You have to advocate for yourself.  You have to find someone that you trust with your life. That is literally what you are doing.  Selecting someone who you trust to make what are potentially life-and-death decisions for and with you.
This is what I have been up to the last few days.  I had some solid concerns over the Onc I was seeing.  I had been lazy and stuck with that doc for a year. I reasoned that I was just doing a couple routine visits for follow-up.  I had found a different doc I wanted to try, but didn't want to go through the hassle of transferring records and getting time off work to go in for a visit.  (dealing with guilt over taking time off work for health care is a topic for another day)  But, when the CA27.29 came back bad and then the PET came back spotted like a Dalmatian I had to get honest and deal with my laziness.
I got my second opinion today.  NIGHT and DAY!
I found someone who connected on the intellectual level I want to function at, who understood the disease, research, options, drugs in testing, and took the time to speak with me until she could see that I had absorbed and processed all of the data she was sharing.
She verified the conclusions of the previous Onc.  And then see went to work requesting the tests that will fill in gaps in the testing I completed last week.  I bit of my bone biopsy is being sent out for HER2 testing. She then went over an outline for treatment options again.
So, today I learned that we may or may not be treating HER2+.  My original cancer was E+, P+, Her2+, or triple positive.  The biopsy testing didn't include the HER2 testing, although Onc 1 lead me to believe it had been included.
If it is HER2 + we will go with one family of drugs.  If it is not, then we will be looking at a different family of drugs.
THIS IS A MAJOR FACTOR IN TREATMENT!
Why did the first Onc want to start treatment based on the assumption it was HER2+?  If that assumption was wrong I would have waisted chemo, a head of hair, and precious time I want to spend saving my life.
So, today was a great day.
I feel like we are headed in a more constructive direction.  I feel trust and hope in my options for a Onc Team.  If I choose this team or another team I know that the options are in my favor.
Tomorrow I am getting a second second-opinion.  Well, actually I feel like today was really a first opinion.  So tomorrow is my second opinion, right?

By Wednesday/Thursday I will know if I am fighting HER2+ again or not.
By next week I will have a treatment plan!  I will be on the warpath.  I will be fighting with full armor.
Envisioning this makes me feel strong.


My Blessings:

1. I am grateful for friends and their faith.  Thankyou for your prayers and the fasting you dedicated to me.
2. Working 8 hours with out a nap today, and then getting off work and working on other projects.
3. Halloween candy dishes, especially caramel apple suckers.
4. People who love my kiddos and make them happy.