Day 2 of my Pink Ribbon Selfie Project

Day 2 of my pink ribbon selfie project for breast cancer awareness month!  I was intending to only post these to Facebook.  However, because a VIP friend of mine is not on Facebook, but is a faithful follower of my blog, I will also post the pics here as well.  You know who you are!  Love ya!  :)

Here I am at the KHS football game.  Donning a pink ribbon baseball cap.  Friday night lights with the Kingwood Mustangs!  The KM4B drumline (snares) pinked out their sticks in honor of breast cancer awareness month.  I happen to be the #1 fan of a certain snare drummer girl.  Nobody said selfies had to be just myself, right?  Thanks guys!  And girls!  The pink sticks looked great and y'all rock.

I admit I felt a little foolish taking a selfie with the high schoolers.  I'm such an amateur!  I borrowed my daughter's selfie stick, which certainly added to the foolish factor.  When she uses it, you can't even tell in the pic.  I use it and my hands are all awkward, visibly holding the stick, and the picture is crooked.  Goofball.  Maybe by October's end my technique will improve?!

Good Times

Well hello there!  It's October 1st, the first day of breast cancer awareness month.  We'll be seeing lots of pink this month.  Let's keep it in perspective, shall we?  Fundraising efforts by individuals, teams, and companies small and large have led to millions of dollars being donated to breast cancer research.  Trickle that way, way down to little ol' me, and know that BECAUSE OF THESE EFFORTS, I AM STILL ALIVE TODAY!  And the same can be said for 100's of 1000's of women LIVING with stage IV breast cancer.  It matters.  You matter.  Whatever you have to contribute to the cause, you are making a difference!  Thank you!  (and keep it up!)

2015 marks my 15th year as a breast cancer survivor, and my 9th year as a stage IV (metastatic) breast cancer survivor.  9 years, people!!!  This past year, well really the last two years have been difficult.  If you're a regular follower here, you may know that there was a period of time when it was not looking good.  We were planning for the end of my earthly life.  Not exaggerating, just truth here.  However, since March I've been on combination chemotherapy of two different drugs.  Since then, I've been steadily improving, both subjectively in how I feel, and objectively in my scans, tumor markers, and other lab values.  My latest CT scans show a decrease in size of all tumors, or they are stable (no bigger, no smaller.)  There is very little fluid in my lung.  The bone metastases are stable.  The tumor markers CONTINUE to go down.  It's been amazing!!! 

One year ago today, I was having a thoracentesis to drain excess fluid that accumulated in my lung.  This turned out to be the first of two that I required, because the fluid re-accumulated.  My "tumor burden" (a name for the volume of cancer in and affecting the body) was so great, that I was having trouble breathing after any small effort or activity.  I was coughing constantly.  I was tired and slept a lot.  My heart rate was consistently (and for months) over 100 beats per minute at rest.  My heart was actually pushed to the right side of my chest by the expanding fluid in the left lung!  Bad times!!!  Bad, bad times.

Also, earlier this year, I required a blood transfusion.  My hemoglobin and hematocrit levels were critically low as a result of the chemotherapy agents' attack on my blood-producing bone marrow.  I was having shortness of breath any time I tried to get up and DO anything.  Interesting what missing a couple units of blood will make you feel like!  The improvement after receiving the blood was truly amazing.

The chemotherapy has been working phenomenally, but it's been complicated.  I was getting two drugs on Day 1, then one of those drugs on Day 8, then a week off.  My doctor tried several dose adjustments, but it just seemed that I was more often than not having to miss my Day 8 infusion because of low blood counts of some kind.  Low platelets, low H&H, low white blood cells, etc.  Eventually (just a few weeks ago) she altered the chemotherapy schedule by doing away with my Day 8 infusion altogether.  Now, I only have to go every three weeks!  Hopefully that gives my body enough time to rebuild so I can get regularly scheduled infusions and not be so hit or miss with treatments.

On a more personal note ... we have moved!  We found a house in a sweet location in a great neighborhood that is close to all the kids' schools.  Wish we had moved sooner!  Hate moving, but loving the new house.  The old house is still being "fixed up" and will hopefully be on the market in the next week or so.  Prayers please for a quick sale!

My graduate girl decided to stay home and attend a community college until she figures out what she wants to study.  Yayyy!  So happy to have her home with us.  It was the right decision, for lots of reasons.

We are busy at The Pink Ribbon Shop, and that is awesome but stressful on the family.  It took longer than we expected to find a house and move, thus putting the move right when school started and also right when we need to prepare our business for the busy season.  Tough times, but hey, at least I am leading a more normal life, healthwise, than I have in a long time.  So thankful for that.

More exciting news ... My oldest daughter and her husband have just adopted a baby girl.  This makes child number 5 in their household!  They are fostering, but it is looking like a pretty sure thing that they will adopt this little one with rather unfortunate birth/family circumstances.

Lastly, since it's been so long since my last blog entry, and since it's breast cancer awareness month, I decided to try something kinda fun.  You may get tired of seeing me!  I'm going to post a selfie to Facebook wearing a different pink ribbon shirt or apparel item every day.  Little glimpses of a month in the life of Kim.  Who's with me?!  Here's the first:
 

 

This is in front of our modest lil office in the country.  Still can't believe this is what I look like ... that this is the best I could do after several selfie attempts, but it is what it is!!  I do have some hair, and it's growing, but it's very thin.  And my forehead is huge, uggh.  The good thing is, I am UP 20+ pounds from my cancer low a few months back, so at least I have some chub in my cheeks, and color!  I'm sportin' my Saints t-shirt ... supporting my favorite home team and promoting the breast cancer awareness cause all at the same time.

 

Thanks for reading, y'all!

Moving Along

Since my last post was so loooooong, this one will be brief.  Promise!

Not much has changed, healthwise, in the past few weeks.  Which is a GREAT thing!  I continue to be up and around more and I'm feeling pretty good.  I've gained a total of 9 pounds back after my dying-of-cancer low of 106.  This is because I'm able to eat just about anything I want, and if you're a regular reader here, you know that I love to eat.  So now that I can, I do!  

I continue on the chemotherapy regimen of Carboplatin and Gemcitabine, and since we last spoke, I have not had any scheduled treatments withheld due to blood count or other issues.  This is also a GREAT thing, because you want to be able to keep getting your chemo drugs when they are doing a bang-up job on your cancer!

I want to take a moment to say THANK YOU to all of you who've taken the time to send notes of encouragement my way.  It means a lot to hear from you, faithful readers!

There are a number of things that we've been busy with lately. Both my teenage girls have part-time jobs now.  Only good can come from this, as they gain some worldly experience (outside of their pretty cush existence here in Kingwood, Texas) and also learn about the value of money.  Let's just say, It was time!

Christa will be going off to college in the Fall, and I was able to attend a parent orientation while she attended freshman orientation. Good times with my sweet girl, but long and tiring couple of days!

Such a pretty little campus she gets to enjoy in Huntsville, Texas.

Next, now that I am experiencing better health, however temporary it may be, we have decided to move to a more convenient location within our same town.  When I was gravely ill, it was very difficult to get the kids everywhere they needed to go.  We leaned on a LOT of people to help out, and we are much appreciative, but it would be great if we were within walking or biking distance.  The home-buying and home-selling process is a stressful one (not to even mention the act of moving!) but we feel it's the right thing for us, at this point in our lives.  Additionally, if we lived close to The Pink Ribbon Shop, Danny would be able to come home periodically during the day, if I needed him to.  Or just to check on me.  And his commute wouldn't be as long, which is obviously never a bad thing. So, he has begun preparing our home for sale, making repairs that have been put off, cleaning up like never before, etc.  (who knew pressure washing could yield such amazing results!?)  Meanwhile, I am obsessively and frequently checking the online listings because, that's just how I am once I put to mind to something.  Some might say I'm ... psycho?  But I prefer to call it determined.  Driven.  Yea, that's it.  :)

You know how when you're buying a home, no house is perfect? Well ours is darn near perfect for us, and we are actually mourning leaving our beautiful, private yard and deck behind.  It has served us well.  But what we did "sacrifice," if you want to call it that, is location.  Ten years ago, when we first moved to Texas, we had to expand our search geographically to get the home we wanted.  This time, it's all about location.  We are looking at older and potentially smaller homes to accomplish this.  Again, it's just the right thing for us right now.  Thankfully we have accumulated some equity in our home which will help us make the move without changing our mortgage payment.  Or maybe even lessening it!

Well, I will stop for now.  Saving some discussions for a later post. Thanks for reading.

Miracles and Potholes

I'm going to go ahead and say it.  I am a living, breathing miracle!  My new chemotherapy regimen of Carboplatin and Gemcitabine has knocked my cancer OUT!  Over the last six weeks, I have continued to improve in so many ways.  I know it sounds cliché, but I was on the brink of death.  I felt it.  I knew it.  My doctor and nurses knew it.  My body was failing and nothing seemed to be stopping it.  Danny had talks with the kids of how "Mom's not going to be with us much longer," with them responding "I know."  I've made an unbelievable transformation that we can only attribute to the God of our universe graciously granting me more life than any of us expected I would have.

My tumor marker level has continued to come down.  It has yet to reach the "normal" range, but since it peaked a few months back, it's been lower with each successive draw.  I rarely cough now, whereas before, with my massive pleural effusion, I had an aggravating, almost constant cough.  I'm not running a low-grade fever.  My heart rate is no longer in the 110-115 range.  I no longer need 11-12 hours of night sleep plus a 2-hour nap every day.  No pain meds required.  No anti-nausea meds required, either.  Most importantly, I am feeling more alive than I have in a very long time!

I'm no longer stuck in the house and in my "spot" on the sofa due to fatigue and weakness.  I'm able to drive myself places.  I'm able to drive the kids places, an act that my previously (relatively) healthy self used to complain about.  And, I can eat!  This is something about which I've blogged extensively.  Eating is such an integral part of human life ... both physically and socially.  Necessary for life, for sure, but also pleasurable.  In my family, every occasion is marked with a get-together that includes great food.  Heck, sometimes there is no occasion ... the occasion is the meal!  Can you say crawfish boil, fish fry, and big pot'o'gumbo?  What can I say, I love to eat!  Everything is tasting so good.  I've even gained some weight back.  Another activity that I really missed over the last few months is cooking.  So glad to be back at that, too.  Nothing major, and I do still get a lot of help, but I so enjoy planning meals and providing for the family.

All of these improvements have been gradual, but there was a definite time, very shortly after I started on Carboplatin and Gemcitabine, that I felt things turn around.  It's been amazing!!!  I'm so happy to again be an active participant of the family again.  Firstly, it's really difficult to depend on others to such an extent that we've had to.  The meals, the kid-driving, and Kim-driving that others have provided have all been such a blessing.  And secondly, it's hard to be present but not totally there.  Yes, I could still talk, and I was very interested in the kids' activities, but being so sick, I wasn't myself and really wasn't much help to anyone.  I was a burden!!!  I still am, to some extent.  But I like to be more involved than I've been able to be.  Filling out school paperwork, helping with college planning, working out transportation arrangements for all the kids' activities, paying bills ... and especially attending the kids games and performances.  These are things you take for granted and even complain about when you are able to do them.  You ladies know how much work it is to just be a mom!  Well, I'm happy to be a mom again.  And this week, I was able to see my daughter, Christa, graduate from Kingwood High School.  Woohoo!

SO MANY BLESSINGS!

It's been a bumpy road, though.  Two weeks ago, Dr. C informed me that one of the chemo drugs had caused a decrease in my body's magnesium level.  It's one of the common side effects of one of the drugs.  A low magnesium can interfere with the nervous system in some way (I didn't catch or care about the details,) and evidently this needs to be corrected right away, or else, something...  So she recommended that I take a magnesium supplement.  Fine, no problem!  Oh and I would need to receive an IV infusion of magnesium with every administration of chemotherapy.  What she didn't tell me was that magnesium is a 2-hour infusion, and if the value drops even lower, I'm in for a 4-hour infusion.  It is NOT fun sitting in a recliner for hours and hours every week!  First the premeds, then the chemo, then the magnesium.  So many bags.  So much tubing.  It is even less fun for the person who accompanies me to these infusions (Danny,) who has to sit in a non-recliner chair.

Last week, my red blood cell counts were dangerously low and not only could I not receive my chemo because of it, I was told I needed a blood transfusion.  Uggh!  I was like, whoa, wait just a minute now!  I don't think so!  Don't they have medication for that??  Fifteen years ago (yes, 15!) when I was first diagnosed with breast cancer, I was given injections of a drug called Epogen to help boost the red blood cells.  I recall it working well.  And right now, I regularly receive Neulasta injections to boost my white blood cells.  So Danny and I were both somewhat shocked that they were now telling me I needed to get blood.  Wasn't that just for very sick people?  I mean, really... I wasn't feeling that bad.

I had actually told Danny a few days prior that I could tell that I must be low.  Although much, much improved from my near-deathbed levels of fatigue, I was getting out of breath with little activity.  I had to curb my walking pace to a crawl to avoid getting winded.  But... blood transfusion?  I expressed to the chemo nurse my misgivings.  She said that the APN would come and talk to me about it.  That sounded great, because both Danny and I needed convincing.

Alicia explained that with each successive chemo cycle, my blood counts were getting lower.  They would bounce back some, but each recovery level was lower than the previous one.  My bone marrow was having difficulty keeping up after the repeated chemical attacks.  They recommended a blood transfusion, two units, to bring the levels up to a healthy level, so that I could continue to get the chemotherapy.  I communicated with her that I didn't feel that bad.  She said that if I was already symptomatic, they surely didn't want me to get any worse.  And it would be better to get lower, yet more regular (weekly) doses of chemo  than have to periodically skip a week due to the low counts.  This all made sense to us, and we agreed to the transfusion.  On top of my cancer treatment world crashing down on me, today we are dealing with an angry teenager who is communication-challenged regarding her after school plans, and she doesn't drive!  Arrrgh!  Our solution:  call in my mom to come and help!

It was just so overwhelming.  I needed magnesium again (at least a 2-hour infusion,) and the blood transfusion would take at least 6 hours.  This was a Monday.  We planned on me getting the magnesium that day, and the blood the next.  Then try for the chemo on Friday, assuming that my counts would be adequate after getting blood.  We had to make arrangements to get the kids from school and to their respective activities.  And this would be 3 days of missed work in one week for Danny.  Thankfully my mom flew in and planned to take me to the two remaining appointments of the week.

The transfusion went well.  It was a very long day in a hospital bed!  My mom and I were there for about 9 hours.  By the time you check in, get escorted to a room, have your port accessed, blah, blah, blah ... whew!  What a day.  We had a good time, considering the circumstances.  We brought snacks:  a bag of pretzels and a jar of cookie butter.  What?  Never heard of cookie butter?  You don't know what you're missing!  OMG it's delicious.  I bought it from HEB after the nice HEB lady was offering samples while making cookie butter pie in the store.  I'm a sucker for free food samples in the grocery store.  After tasting it, of course I had to buy it.  It's a jar filled with crushed spiced cookie creamy goodness.  Trust me.

Uhhh, where was I?  Oh yes, the transfusion.  We were well taken care of and everyone there (St. Luke's Lakeside Hospital) was super nice.  In the following few days, my shortness of breath simply disappeared!  Yet another instance of "I didn't know how bad I was feeling until it improved."  Interestingly, we parked in the same little parking lot as the MD Anderson blood bank bus.  They were having a blood drive!  I was there to receive blood, and they were there to collect it.  If you ever have the opportunity to give blood, please do!  It helps people like me.

Friday came, and my mom and I headed to MD Anderson for my rescheduled chemo treatment.  I had my labs first, as usual.  Unfortunately, the nurse met with us in the waiting room to inform me that again, I wouldn't be receiving my infusion that day.  This time, my platelets were too low!  Ahhhhh!  Another week off.

Sighhh... It's as if I'm taking one step forward and two steps backward.  So much progress, yet so many obstacles!  I'm concerned with the big picture.  Here I have a treatment that is working phenomenally on my cancer, and yet its dangerous side effects may eventually lead to the need to discontinue it.  I can't keep having to postpone treatment.  Clearly, how can it keep working effectively if I can't get it regularly??  It's worrisome.

This week was my CT scan of the chest, abdomen and pelvis.  I did not expect BAD results, because overall I am feeling so well.  Nevertheless, it is stressful.  The cancer cloud is always looming above me.  Per our usual routine, we checked in to the CT department, was given my contrast-laced lemonade and I informed the nurse that I was going to the Infusion Therapy department to have my port accessed.  I've been doing this for a while now, because I found that when they inject the contrast media into a peripheral vein (such as in the arm,) it burns.  It doesn't burn when it's injected into the power port, which has a direct connection with my internal jugular vein.  The CT department nurse said "We can access your port here."  This was new, but it's more patient-friendly to do it there than having us walk across the building and to another floor.  So, I agreed to it.  Big mistake!

It was clear early on that the nurse who was to access my port (in case you don't know, it involves sticking a special needle device into the port which is implanted under the skin in my chest,) was not experienced in accessing ports.  In fact, she appeared to be inexperienced in opening the package and setting up the sterile field.  Red flag ... but you think, well, she's just being cautious.  Surely she has done this before.  Right?  Right?  She sticks me, but is unable to get a blood return and she is unable to flush the line with saline.  This, of course, is paramount to the port working properly.  I say, "I'll just go to the 8th floor (Infusion Therapy.)"  She removes the needle, and tells me "I can get another nurse to try."  That was my ticket outta there, but noooo, I say "OK."  Why?  Why would I do that??  The second nurse arrives, and proceeds to display an extremely slow and deliberate set-up, similar to the first nurse.  Against my better judgment, I allow her to continue.  However, she does successfully access my port, as evidenced by blood return (getting blood when you pull back on the syringe) and the ability to flush with saline.  She tapes it up, abundantly, I might add, but then it no longer works.  No blood return, can't flush.  I am really getting upset now.  Tears are welling.  She untapes it all, fiddles with the needle, keeps trying, using (too) much force on the syringe's plunger.  Finally, I stop her.  This is enough.  I tell her that I'm going to Infusion.  Just take it out.  She does, but now the skin surrounding my port is red and irritated, caused by the repeated application and removal of adhesives.  First the tegaderm which held the topical anesthetic in place, then the adhesive-ringed hole of the sterile "drape," then the port access kit's dressing.  Repeat times three, and by the end of the day there is even a small area of broken skin!  Even today, almost a week later, my skin is still damaged (yet healing.)

Meanwhile, Danny was in the waiting room, where he was worried about me because I'd been gone for much longer than I should have been.  He had received a call from my 12 year-old son-- David was sick and wanted to be picked up from school.  Danny called his Dad to work this out.  Later, the school nurse also called.  And, my daughter texted us because she, too, had a situation.  It was letterman jacket fitting day, and she didn't have a check.  It was piling on!  I came out into the waiting room, fresh from my traumatic and unsuccessful port access experience.  It was then that I broke down and cried!  I was seeing the big picture.  If my port doesn't work, I cannot get chemo.  Or blood.  This treatment that is literally saving my life can only be infused through a central venous access port.  This port has been working for over 2 1/2 years.  It required an outpatient surgery to "install."  I really don't want to have to have it replaced.

Why now does it not work??  I wonder if they didn't flush it properly after the blood transfusion.  We head to infusion and wait what seems like forever.  I am finally called in.  I am praying that they can access the port.  It is only in retrospect that I fully recognize what went wrong in the CT department.  That, and after going to Infusion Therapy and having a VERY experienced nurse access my port quickly and with ease.  Success!  Her kind demeanor eased my worried mind and she assured me that the port was working fine.  Danny's fervent prayers from the waiting room were answered!!! The nurse advised me to go to Infusion Therapy FIRST, next time.  Don't you worry, Nurse You-Are-The-Bomb, don't you worry!

I was scheduled to see Dr. C six days later.  I usually have an appointment with her after any scans are done, so we can discuss the results.  However, the day following the CT scan, as I was driving home with my daughter in the car with me, my cell phone rang.  It was MD Anderson.  No matter who or what department calls me from there, the caller ID says the same number.  So I always know it's MDA, just not whom in particular is calling.  Of course I answer, and we are on speaker phone in my much-loved, high-tech mini SpUV.  (That's right, I call it a SpUV.  Sport Utility Vehicle)  "Mrs. Hellmers?"  "Yes?"  "It's Dr. Coscio."  I don't remember what I said, but what I am immediately thinking is oh-my-gosh, WHY is Dr. Coscio calling me?  She said that she didn't want me to have to wait all the holiday weekend to get this news:  the fluid in my lung is greatly decreased, and it's the best it's looked in a very long time.  I SO NEEDED THIS!  The CT hadn't yet been officially read by the radiologist, but Dr. C could see the improvement herself.  After the call ended, Bethany and I could only look at each other and smile!  HAPPY WEEKEND TO ME!

Today we met with the doctor to go over the CT results in greater detail.  She handed me the report and proceeded to pull up the scan (digital films) on the computer in the exam room.  She showed us a side-by-side comparison of last week's CT and the one from three months ago.  The difference was amazing!  There was no visible fluid in the left lung.  And, that lung had re-expanded from its previously collapsed condition.  It looked much like the right lung, instead of being a small fraction of its size.  The radiologist's report noted that the left-sided pleural effusion had "resolved," and phrases such as "improved" and "significant improvement" were used more than once.  There were examples given of nodules (tumors) in the chest, liver, and right lung decreasing in size, with specific measurements documented.  Objective evidence of major improvement, on top of me feeling good!  Wow ... just, wow!

 



Family pic @ Christa's graduation



Me & my graduate girl

Bethany & Me, awaiting the ceremony




Mother's Day



Me & my mom during her last visit here

After 15 years of cancer treatment, this is the first time I've taken a picture while getting chemo.  Somehow, oddly, I found it impressive that I was getting 6 different bags of drugs, the most ever at one time.  Hey, whatever it takes, right? 

 

 

Hope

I keep a collection of Bible verses saved as photos on my iPhone, for when I need some reassurance from God straight from His word.  I don't read the Bible much (my bad) but I like having quick and easy access to verses that apply to what I'm going through.  Recently, while lying in bed and restlessly trying to go to sleep for the night, the first one I flipped to when I was feeling particularly low was Philippians 4:6:  Do not be anxious about anything, but in every situation, by prayer and thanksgiving, present your requests to God.  I realized that in my state of depressive self-pity, I wasn't even praying any more!  And I definitely wasn't being thankful for all I've been given and continue to receive.  It was a wake-up call, and yet it provided me with quite a peaceful night's sleep that night.

Then there's this one, Isaiah 48:10:  See, I have refined you, though not as silver;  I have tested you in the furnace of affliction.  Unfortunately, I can relate all too well to being tested in the furnace of affliction.  Nothing says furnace of affliction more than cancer, especially in my last few months.  The verse speaks to me, but also brings me to prayer:  Lord, please take me out of this furnace of affliction!

I mentioned previously that my coughing had improved slightly.  This has continued!  At my last visit with Dr. C (during my one week "off" between three-week chemo cycles,) she informed me that my liver enzymes, which had been extremely elevated and rising, had fallen dramatically.  My tumor marker was down some ... not much, but a decrease definitely beats its previous upward trajectory!  And, the chest x-ray done the following week showed less fluid than the previous study.  These were all very, very positive signs, and she was pleased!  However, I was feeling rather tired and was still having issues with appetite and weight loss, and now constipation to boot.  I was quite anemic and my platelets were dangerously low, a direct result of the chemotherapy attacking my bone marrow.  She explained that mine was probably a little slower to recover because it had been assaulted for so long and in so many ways.  She predicted that the platelets would not be sufficiently recovered by my next chemo cycle scheduled for the following week, and that I should take an additional week "off."  Two weeks off instead of one.  This turned out to be a Godsend!  I enjoyed being able to eat more during the extra time, and I was getting some energy back.

Honestly, I dreaded going back for that next cycle!  But objectively there were definite improvements that could only be attributed to this new chemo regimen (Carboplatin & Gemcitibine.)  So I pressed on to my 2nd cycle with renewed hope that this upturn would last.

This time, I was given two new anti-nausea medications to control the nausea & vomiting I experienced with my first cycle.  These were given at the same time as the chemo was administered and were to have "long-acting" qualities.  The result:  very little nausea, and no vomiting!  Victory!

The only recent hiccup was a bout of severe constipation.  And I do mean severe.  Nothing makes you more committed to drinking more and eating more fiber than constipation complicated by a fecal impaction.  Ok, enough said there.

Beginning a few days ago, I am feeling alive again!  I am able to eat mostly everything I want but am still dealing with some esophageal issues related to intake of non-soft foods, and also with some food aversions such as milk, meat and chicken.  I have not needed nausea meds.  I have more energy than I've had in a long time, and I've been able to increase my activity level a little.  I have even driven myself to a few places!  I'm calling it a miracle.  Yet another "God isn't finished with me yet" moment.  I'll be honest here.  I'm pretty sure I was dying.  I don't feel like that any more.  :)

My latest

It's come to my attention that my last post may have seemed too harsh to some.  I re-read it, and I wonder why I feel the need for people to "get" stage IV cancer.  Maybe I just want them to get "me" in the place I am now.  Danny has always told me that I care too much about what others think about me.  I suppose that's true!

Yesterday was a sad day.  My mom left to go home to Louisiana after spending over a week here with me.  I know she has her own work to do and others to care for at home, but it was so nice having her here!  She kept me company during these long, boring days I'm having at home, and she helped our family in countless ways.  Mostly we did a LOT of talking, which was awesome.

On to the cancer update ...
A couple of weeks ago, after receiving the dismal CT results by phone from Dr. Coscio, I quickly agreed (of course I did) to a change in chemotherapy.  Having time to mull over the CT report while awaiting insurance approval, AND having a more uncomfortable recovery from the thoracentesis, I kind of sort of fell into yet another sad period.  Because this is all so hard!

The latest thoracentesis was complicated by my uncontrollable coughing fit during the procedure, which had the doctor behind me pretty exacerbated and nervous.  As if I could control the urge to cough!  He ended up removing the needle after only draining 1500cc this time.  For a couple of days afterwards, I had soreness (actually, pain) at the needle insertion site that I did not have the first go round.  Yet again this time, my lung did not re-inflate after the fluid was removed.  And unfortunately, this thoracentesis did not afford me the relief that the first one had in the way of eating easier, breathing easier, and coughing less.  :(

A couple days after the CT result phone call, I received a phone call from the doc's APN who informed me that the new chemo was approved and could I come in on that very day for the first dose.  At which point I started crying.  Balling, really.  I felt like I needed to schedule a visit with the doctor to discuss everything.  At the time I thought a phone call with results was just fine, but it was far from fine.  I was tired of everything, scared of the new chemo and how was my body going to take it and I don't know what to do and ... really it was very unlike me to put on such a display of emotion, but I guess maybe it was long overdue.  Or something!  Later that night, during my regular text conversation with my mom, I asked if she would come visit me from N.O.  I was definitely losing it.  She was here within a few days, because a mom knows when her daughter needs her mom.

Needless to say I did not go for chemo on that day and instead, scheduled an appointment with the doctor for the following Monday.  This time my mom accompanied me to my doctor appointment instead of Danny, only because only one visitor was allowed in the exam room and chemo room, and this was her opportunity to meet my caregivers for the first time.  I'd been wanting her to meet these wonderful people!

Dr. Coscio entered and asked if I wanted to see the CT scan.  Of course I did.  She showed us the gigantic pleural effusion and the resultant shrunken condition of my left lung.  To get an idea, hold up your left hand.  That is my right lung.  Now imagine my left lung, which is about the size of a quarter in comparison to the right lung.  The remaining space is filled with fluid.  She showed us the thickening nodules in the left pleura, indicative of progressive metastatic disease.  She said "what's right is left and what's left is right when you're looking at the scan."  I silently acknowledged that she was saying this for my mother's benefit, for which I was thankful.  Because I already knew this fact.  You know, having seen so many of my scans and having a medical background and all.  Then she pointed and said "There's your heart."  And to myself I'm like, yep, there's my heart.  Again, nice of her to walk my mom through the scan like this.  THEN she said "It's supposed to be on the other side."

A wave of OMG washed over my whole body, and my eyes filled with tears, but I did not let them fall.  Somehow, I held it together while I absorbed the fact that my. entire. heart. was displaced to the right side of my chest by the large pleural effusion that had long taken over the left side.  The CT report had stated that I had a "new mediastinal shift to the right," and I knew that in the past, my esophagus had shifted, causing me to have difficulty eating.  But this visual, seeing and hearing the words that my heart was in the wrong place, was so bizarre and jarring ... let's just say one can never forget it.  Ever.

After some measure of silence, I was able to ask if it had relocated back to its proper position after the thoracentesis.  She attempted to pull up the post-thoracentesis chest x-ray, but the computer wasn't cooperating and we weren't able to see it.  I take that as God's way of saying "You've had enough today, Kim, you can't handle any more."  Dr. Coscio went over the two new chemo drugs I'd be starting and I signed consents, completed the necessary paperwork, and received prescriptions for this and that.  In a short while, I would be heading over to the clinic to have my first infusion.

Once my mom and I were alone again in the exam room, we talked and discovered that we each had had the same overwhelming flood of emotion at the same time.  A sense of disbelief but knowing that it was true.  Thoughts of "I've never heard of anything like that before," but there it was, we both saw it, plain as day.  The realization that my situation was much more dire than ever before.

So I'm a go with Gemcitabine and Carboplatin -- had my first combo dose last week and Gemcitabine alone this week.  Had to step up my anti-nausea medications last week, and I'm very tired.  I seem to be coughing a little less, but I don't want to get my hopes up too soon.

I went to church this past Sunday, because it had been a few weeks, and also because my GIRL was playing drums this week and my big GIRL was singing!  They are so awesomely talented.  And beautiful.  And smart.  But I digress ...
I made what I now know was a big mistake by allowing my mom to drop me off in front of church and walking into church alone.  By the time I reached our family's pew, I was extremely short of breath and felt like I was going to pass out.  My heart was pounding and I couldn't sit down fast enough!  Evidently this was the farthest  I had attempted to walk (and probably the quickest) in a while.  I sat, then I cried, mourning the sad, sad condition of my ailing body.  That I couldn't even walk into church without getting out of breath!  It took a long, long time for me to get ahold of myself and stop the sobbing.  With Danny's help and reassurance, I finally did, though, but not without upsetting my kids and mom.

Note to self for next doctor visit:  ask if she's ever seen a patient's heart move to the right side.  Just curious.

Update and a Little Rant

Hello all.  Happy Valentine's Day, Happy President's Day, and Happy Mardi Gras!  That should cover everyone!  Yesterday I received my 2nd king cake of the Mardi Gras season, thanks to my sister-in-law Gwen.  SO GOOD!!!  I miss my hometown and parades and all the music & food that goes along with them.  I'm sorry that I'm no longer able to provide my kids with the whole carnival time experience.  Growing up, I thought everyone had Mardi Gras holidays from school & work.  Good times.

Sigh ... here in realityville ... the ups and downs of stage IV cancer treatment have been pretty intense.  I was so hopeful after what seemed like an amazing response to my first course of Ixempra.  However, how I felt after my second course was much less than amazing.  I kept waiting for that "I feel alive again" moment, but it never seemed to come.  Coughing, difficulty digesting food (even in small quantities,) pain, and evening low-grade fevers were all worsening.  I've become a prisoner in my own home, alone, only venturing out for a select few kids' activities and church if I determined that my white cell counts could be depended upon to provide my body with adequate protection from infection.  Either of these (the worsening of symptoms or the all-day every-day staying home) could plummet even the strongest person into a depressive state.  Together they have really done a number on my mood and level of hope.  It is hard to keep going.

My mom checks in on me with daily "How you feeling?" texts.  I have a lot of people praying for me and who care about me.  It's just difficult to keep answering the questions with honesty.  If you're lucky (wink wink) and you're really close to me, you might get a super-honest "crappy" or "not so great."  If you're an acquaintance, you'll probably get something like "could be better, but could be worse!" or "well, I'm here" (such as with church friends, because it IS actually a HUGE accomplishment to get myself up, dressed, and to church.)  Sometimes it gets old to keep burdening the family with my brutal honesty, so I say "I'm good" or just don't respond to the text, in which case they KNOW that you  must not be well, because they know you that well!  At times you think that even a not-so-close friend seems like she genuinely wants to know what's going on.  You take a chance, you start telling her, but you sense immediately when you've said too much:  her eyes start to glaze over and you think she is probably regretting that she even asked the question.  You end the conversation immediately, and then you're not sure who feels more ill-at-ease, you or her?  The real kicker here is that sometimes I, the patient, end up comforting her, the "friend" because something I said has jarred her, or confused her, or made her start tearing up.

The reality is that MOST people DON'T understand this life of mine as a stage IV breast cancer patient.  They don't have to, and it's not their fault, either.  It's something that you have to experience to "get."  (And I don't wish that on anyone!)  I know people who, by some strange phenomena, have lived to adulthood without ever having had cancer touch their lives in any way.  They know nothing about it.  Some are curious and some are not.  I appreciate when they tell me that they don't even know what to say, because they've never known anyone with cancer.  God bless them!  And, wow.

Others (most people, I think) have had limited exposure to cancer patients, so what they do know is, well, limited.  Most folks know this:  you get cancer, you get chemotherapy, you lose your hair, and when your treatment is over, your hair grows back and you live happily ever after.  What most folks DON'T understand, is how someone can be on an "endless" treatment regimen.  Back when I was a newbie stage IV cancer patient, I myself didn't even "get" this, because I hadn't yet experienced it.  It's uncommon.  Over the holidays, my hair grew back some.  (it was great!)  But when I got sick again, and lost my hair again, I heard someone say "I thought she was finished with her treatments!"  Anyway, I'm not sure how I got off on this tangent!  Guess it's just a peeve of mine.  Guess it can be hard to grasp how someone could receive cancer treatment, continuously, for over 15 years, like me!

So ... the latest.  I'm awaiting insurance approval to begin a new chemotherapy combo (Gem-Carbo) as soon as possible.  The Ixempra was not working, as evidenced by my very, very ugly CT scan from last week.  Had my second thoracentesis done yesterday which, sadly, I looked forward to all weekend!  How pitiful is that that I could hardly wait to have excess fluid ("very large pleural effusion") drained from my lung??  My first thoracentesis back in October offered me so much relief from the incessant coughing and difficulty swallowing & sleeping, that I couldn't help being hopeful that it would work the same way this time.  Perhaps it's too early to tell.

Very, very nervous about yet another chemo drug.  And I'm really getting tired of it all.  I'm worn out!

Latest News

Well, hello!  Cycle #2 of Ixempra was 4 days ago.  This cycle is already proving to be better than #1.  Day 4 of cycle #1 consisted of an emergency trip to the clinic for an infusion of IV fluids.  Then, for the following four consecutive and highly inconvenient days I had to make a trip to the clinic to receive injections of Neupogen for low white blood cell counts.  I felt like you-know-what, and I allowed myself to get dehydrated by not eating much or adequately drinking ... which then made me feel even worse, i.e. lightheaded and weak(er).  This time I've willed myself to eat and drink, even though my appetite is poor and I don't thirst much.  Although ... me thinks it's not all in my head or my will, for that matter.

My doctor used the phrase "tumor burden," which I understand to be the body being overwhelmed with the cancer inside, thus causing my many symptoms.  I believe it played a large part in my body's struggle to handle the first cycle of chemotherapy.  What I was experiencing were the effects of chemo ON TOP OF the effects of cancer.

Amazingly, I could sense some improvement in my chest pressure/pain less than two weeks after my first Ixempra infusion.  Could it possibly be??  Talk about HOPE!  Slowly I was able to eat a little more, and gradually I increased my activity level as well.  In the past I've referred to myself as the Energizer bunny, because I seem to just keep going and going.  I keep getting clear messages that God isn't finished with me yet.  Is this, perhaps, another one of those times?  Guess I may be getting ahead of myself.  In any event, if I AM the Energizer bunny, I'm on a sluggish, "low-battery" pace!

Dr. C was thrilled to hear of my improvements.  When I communicated my surprise at how quickly Ixempra seemed to work, she said she was not surprised.  That when it works, it works quickly.  Woohooooo!

My labs were good to go.  Go on to cycle #2, that is.  The only lab value that wasn't available yet was my tumor marker, the CA 15-3.  I was so anxious to see how far down that baby had moved!  Dr. C assured me she would message me when the result was in.  The message arrived just before dinner.  I quickly opened it, but the results weren't what I had hoped for.  In fact, it was shocking.  I was crushed, and not just in spirit.  I felt an immediate drop, a heaviness, in my chest.  Tears welled up.  It was 47, up from 28.  It hit me hard, I suppose, because I expected it to have gone down (at least a little!)  I'm thinking, how could this be?  Am I really feeling better?

The message containing the tumor marker result also came with an explanation from Dr. C.  She explained that an elevation sometimes happens after an initial chemo infusion.  I desperately clung to that!  And then I hit the internet, of course.  It turns out that what she said was true ... imagine that!  I was, however, more pleased with the more in-depth discussions online than the doctor's one sentence.  But such is the nature of "messaging" as opposed to a face-to-face conversation.  What I found was that the level could go up if a cancer is "very sensitive" to a certain chemotherapy treatment.  The chemo causes many cancer cells to die and release large amounts of the marker into the blood, which will raise the level of the tumor marker for a short time.  Now we're talking!!

The plan is to re-check the CA 15-3 in a few weeks.  If still elevated, I'll be scanned (with the usual CT's of chest, abdomen and pelvis.)  But hopefully, prayerfully, the tumor marker level will correlate more closely to how I'm feeling, which is not too shabby.  Prayers are working, I truly believe that ... I'd like to see some objective evidence of it, as well, in the form of improved scans and labs.  No matter what happens, I know I and my family are in God's hands.

ADDENDUM:  I feel the need to clarify "not too shabby."  In this case, it's a very relative term!  I am home all day, and I feel a sense of accomplishment when I complete even the menial of tasks, such as paying a bill.  Or making a phone call.  Or bathing.  Or going through mail.  One recent day I moved a few photo albums from my bedroom onto the bookshelf in another room.  Wowza!  I missed church Sunday because I wore myself out taking a shower.  (Note to self:  Next week, shower the night before church.)  I now only take pain medication at bedtime.  I now only take nausea medication about once a day.  I am proud of myself when I have a "normal" poop.  I am even happier when I poop every day.  These are improvements, people!  Ahh, the little things.

Update

On January 2, 2015, I had my first infusion of Ixempra.  There was an issue with the proposed clinical trial in that my starting it would be delayed due to some changes in the principal investigator (doctor in charge of trial) and the trial drug's dosage.  Dr. Coscio was of the opinion that I did not have time to wait for the clinical trial to get back underway.  So, new chemo it is!  Oh wait, didn't mean to sound that excited about it.  Well, maybe I was ... in a way ... at first.  But now that I'm IN it, NOT SO MUCH.

I was able to squeeze in a family visit to Louisiana between Christmas and New Year's.  I ate at almost all of my favorite restaurants, spent time with family and even saw some old family friends I hadn't seen in some time.  We reminisced over old pictures, and we talked and laughed a lot.  My mom made some of my favorite meals, just for me.  I didn't have much of an appetite, but I ate smaller portions to enjoy all the variety.  (Actually, I did pretty darn good on my mom's fried shrimp ... which I paid for, later!)  You know it's bad when I passed completely on beignets from Café du Monde!

It was a needed trip, and I was intentional in my planning of it.  My coughing, fever, feelings of fullness, and increasing chest pressure hinted at what was to come.  I wasn't well.  I was starting to wonder if everything I did, everything I ate, every place I visited, every conversation I had ... was going to be "the last."

I've been living with this chronic, deadly disease, and its many different treatments, for many years.  But only within the past year has the disease started to cause me problems in a noticeable, physical way.  I've had subtle respiratory symptoms before, over the years, during two occurrences of pleural effusions.  These resolved with the success of new treatments/chemos.  There is no cure for cancer, so "successful" treatments are always temporary.  Some last longer than others.  Those are the good ones, the ones you wish would work forever.  Some caused side effects that I could live with, some caused side effects that were simply unbearable.  Such is the progression of stage IV cancer.  If a drug works, you stay on it until (a) it no longer works, or (b) the severity of its side effects outweigh its benefits.

Last Spring I needed radiation to the spine due to tumor growth into the epidural space, causing leg weakness.  The Summer was the season of severe neuropathy caused by the chemotherapy I was receiving.  So severe that I could hardly walk, get in and out of cars, or feed myself.  The Fall was when complications of lung metastasis necessitated the removal of nearly 2 liters of fluid from the lung.  This fluid was causing incessant coughing, shortness of breath and difficulty swallowing, eating and drinking ... which led to muscle/weight loss unlike any I've experienced.  All the while, scans and tumor markers showed slow yet steady progression of the cancer, despite attempts with multiple drugs to slow or stop it.  Some areas might be stable, while others showed slight growth, and still others saw brand new tumor.

So where am I now?  I'm anxiously waiting for the new chemo to be effective.  The fluid in my lung has again increased (says the chest x-ray.)  I feel an intense pressure from inside of my chest, pushing outward.  When I lie down, I feel like there's a ton of bricks on my chest.  Pain medicine helps, but it doesn't last all night, so I wake up with much discomfort.  I'm not sure how much time the doctor intends to give this new drug to work. 

In the meantime, we have shed a lot of tears, and we worry about the coming days, weeks, and months.  It's hard on the whole family, especially Danny, when I'm weakened and laid up.  I pray a lot for him and the kids.  He is having to do everything in addition to caring for me.  The past 10 days feel like an eternity!  Yes, I'm uncomfortable, but like I always say, I've got the easy part.  I have the gift of knowing that I'll be with Jesus when my earthly time is up.  It's my family who has to live under this cloud of cancer, and eventually, without me.  Please pray for us!

Vacation, and moving on to new treatment

Many months ago, I booked us a family vacation in the mountains of Arkansas.  At the time, I didn't know where I would be on my cancer journey, but I figured that if I didn't make the reservations, it would never happen.  So glad I did!  We took the long drive northward to Mount Magazine State Park and stayed in a mountainside cabin overlooking a beautiful valley.  I was able to walk some of the short, easy trails, which I loved!  Had this vacation been over the summer, during the peak of my severe neuropathy symptoms, I wouldn't have been able to do ANY trail walking, for sure!  The timing was great.  The elevation there was mild, and the trails we chose were relatively flat.  So I could walk and breathe and all those good things!  Danny and the kids did go out without me a couple of times, on some of the longer, higher hikes.  Plus I admit I hold them down with my slowness.  But it was all good.  I wanted them to enjoy the area's beauty as we usually do when we visit a state or national park, and not have the family cancer patient limiting their pace or trail choices.  Here are a few pictures:

Me and the kids



Wow!  Gorgeous Fall foliage in the fog.





Our cabin.  Check out the views beyond.



Picnic lunch spot

My silly girls

Christa spotted some color amid all the browns





She has a really good eye!

Don't you just love when your kids show some interest in any of your interests??  Christa took the camera for most of this trip and came up with some great shots!

We drove home the day before Thanksgiving so we wouldn't miss the family feast.  Good times with the whole extended Hellmers family!

The following week was my long-awaited (for me) scans to assess whether or not the latest treatment was working.  This is always a stressful time.  For any cancer patient!  But I think it's getting worse for me.  I start to think about it farther and farther in advance than previously.  So much is riding on these results!  And really, the results haven't been very good for some time now.  It's been a while since I've had a treatment that worked.  Even though I'm feeling pretty good, I worry.  To make matters worse, my appointment to see the doctor was six days later.  SIX days!  I swear, I think that the person who does the scheduling sometimes forgets that the "medical record number" they are working on is actually a human being whose next course of treatment depends on the results of these tests ... which means our life can turn upside down, or not!  Sorry I just think that waiting 6 days for test results is excessive.

But!  I made it through the 6 days and saw Dr. Coscio yesterday.  Danny and I both somehow knew that it would be time to move from Afinitor, Exemestane and Zolodex onto something else.  Nothing we could quite pinpoint, although my cough has been increasing slightly.  Gut feeling I guess.  Maybe because I've been feeling so good, generally without treatment side effects, that we thought that it surely is not working well on the cancer.  In any event, we were right.

My tumor marker (CA 15-3) went up again, and the sad little graph showed a steadily inclining line stretching over the last 6 months.  A lesion on my liver is larger (2.4cm) and there are multiple, new liver lesions.  The lung pleura still shows nodules, scar tissue, and expansion of metastases into the area near my heart and major blood vessels (excuse my lack of medical jargon precision here--  The doctor showed us these areas on the digital films, and I think my eyes were beginning to glaze over right about now.)  The pleural effusion is still present, though not as large as 2 months ago, which was before the thoracentesis when they removed 2 liters of fluid.  Some of the fluid is now "loculated," which means, at least how I understand it, that it's hardened and therefore is not drainable, and explains the very odd & irregular shape of my left lung.  Ironically the right lung looks beautiful!  Weird.  The bone mets are stable.  Nothing new there, except the report says I have a pathologic fracture on my T-12 vertebra and two left ribs.  This I was unaware of.  I always knew that with extensive bone metastasis, I was at risk for pathologic fracture.  Well now I have some of my very own, although it's not noted if these are new findings or just uncharted old ones.  Sigh...

I was given two options.  I want to add here that THANK GOD I still have options!  I know that there will come a day when they will have nothing more to offer me, but I'm not there yet.  The first is a chemo called Ixempra.  Given IV every three weeks over a 3-hour infusion, this would cause hair loss and make me fairly uncomfortable.  The second is a clinical trial.  The particular trial Dr. Coscio thinks I'm eligible for is a hormone therapy type of drug.  It's for patients who have JUST FAILED on Afinitor and Exemestane -- hey that's me!  And you can't have had any other treatments after failing that combo ... so if I took anything else now, I would no longer and never again be eligible for this clinical trial.  The hormone types of therapies are generally better tolerated with less side effects than chemotherapies, plus many of them have worked for me in the past.  So I am leaning toward the trial before the chemo.  I will be getting an appointment with the doc in charge of the trial to get more information and see if I qualify.  But that is where we are.  I was told that it may take a couple of weeks to get going.  Which is fine with me because I'm seeing a Christmas free of cancer treatment -- sounds good to me!