Thursday, March 27, 2014


My next treatment step was going to be a clinical trial.  I read over the literature and immediately felt overwhelmed by the trial's crazy scheduling requirements.  But after discussing with my family, decided to pursue it, thinking it was an opportunity that I didn't want to pass me by.  Well, at this week's visit with the research nurse and Dr. Moulder, I completely reversed my decision and am NOT doing the clinical trial.  Here's why.  It was explained to me that it's a Phase I trial, meaning this will be the first time the drug is being tested ON HUMANS.  That fact really gave me pause.  The nurse said "They are not looking for response, nor expecting any.  What they are looking at is what side effects does it cause, and what will the dosages be."  Wow.  Alrighty then.  A real-life human guinea pig.  Mmhm.  And then there was the fact that it could take 2-4 weeks before the testing on my tumor tissue could take place which would determine if I even QUALIFY for this study.  THAT was the real kicker.

Excuse me, but, I am already over a month out of my last chemotherapy drug which STOPPED WORKING!  My last scans were bad.  I need to be in treatment like, yesterday.  I understand that I couldn't have begun any sort of chemotherapy while on radiation.  That's not allowed.  And I concede that last week, I felt like I was dying, so that wouldn't have been a good time either!  But now that I'm feeling like I might actually live through these radiation side effects, I am ready to move on and start kicking cancer's butt again.  I don't want to give the cancer more time to gain the upper hand.  Gotta get a grip, keep it in check, kill the beast!

Over the weekend, I was able to stop taking Imodium daily.  Not to say that my bowels are back to normal.  They are not.  But they did improve to a level where I felt I didn't need to take Imodium.  I started being able to eat more than liquids and soft, easy-to-digest carbs.  In retrospect I probably advanced my diet a little too quickly.  (A girl gets hungry for real food after so long on the diarrhea diet!)  Yes, I am sure I did, because just yesterday, well ... let's just say I had some "regression" in my gastrointestinal improvement.

Overall, I am doing much better both physically and mentally.  I still feel an increased level of stress, but that is to be expected with what's going on.  I am having to take on much more both at The Pink Ribbon Shop and at home and with the kids' activities since Danny is working full time at an accounting firm.  Except that I am NOT able to do these extra things or even what I used to do, because I've been sick.  It's really been difficult.  Danny has been going in to PRS in the evenings and weekends to get the office work done.  And thankfully we have Lisa who fulfills our orders -- our bread and butter, so to speak.

We pray a lot, and we try to live our lives in a way that follows God's will for us.  We wonder if we have made the right decision in having Danny get a full time job.  Of course there is never a good time for your business to take a nosedive, but all at the same time as my cancer worsening?  Really God?  Oookayyy, if that's what you want, we'll do it.  He was able to get a job so quickly, we couldn't help but think it was what God wanted.  For whatever reason, or reasons we may never know or fully understand, we have to believe that since we prayed so much about it, and it came so easy, that it was meant to be.  Also, we are moved into our new office and it's nearly complete.  It's such a pretty, peaceful, country place!  But sadly, Danny doesn't get to enjoy it all day, or hardly at all.  God's timing.  Only He knows.  Who are we to question?  Trust me, we DO question ... A LOT!  We are only human, so at least God knows of our weaknesses and inabilities.  Still ... these past weeks have been very trying on us, our family, our kids, our marriage.  Prayers still needed on all fronts!

My sister-in-law, Lisa, accompanied me to my Dr. Moulder visit regarding the clinical trial.  I'm so glad I was feeling a little better, and so was able to be much better company than I would have been the week prior, or even just a few days before.  We talked and laughed a lot, which I needed.  Been stuck in the house for too long -- not good for me.  Lisa brought a notepad, and even already had some questions jotted down for the doctor.  So sweet!  And responsible!  So glad we are family.  She and I were definitely in agreement that the timeline of the clinical trial was not the best thing for me, at this time, considering the state of my progressing cancer.  It was a huge relief to me that it seemed totally like the right decision!  I was sure.  I had no misgivings about it, and I knew that was God's doing.  Honestly I wasn't too keen on the clinical trial thing.  This particular one, not just clinical trials in general.  Even after Dr. Moulder came in and explained that of course we look for response and hope for response.  Duh!  The whole point of clinical trials is to try out new drugs and hope they work!  But this is not the clinical trial for me, right now.  However she did mention another one that may have potential for me in the future, and she is adding me to the waiting list.

Tomorrow, Friday, I will start on a chemotherapy drug called Eribulin (aka Havalen.)  This, they say, is similar in class to Abraxane which I tolerated fairly well for over a year.  And it has similar mild side effects.  It's a 15-minute weekly infusion that's given 2 weeks on, 1 week off.  At my chemotherapy "home," the MD Anderson Woodlands Campus.  Actually looking forward to moving on!  Hopefully this one will work.  Quickly, for a long time, and without debilitating side effects!

Friday, March 21, 2014

Radiation is kicking my butt!

So, I saw Dr. Coscio Monday to report that I am not doing well!  I'm suffering from extreme fatigue and diarrhea.  This is the worse I've felt while on cancer treatments of any kind in the past 14 years.  No energy.  I can't eat anything without heading to the toilet shortly afterward.  But I'm so hungry!  Sometime I really punish myself by eating real food ... then I PAY in the bathroom for the next several hours.  Imodium is my friend, and helps the diarrhea, but the abdominal discomfort, bloating, and crampiness remains.  As long as I keep to a liquid diet, jello, etc., I avoid diarrhea, but I know that I need to keep hydrated and I need to eat to keep going!  I feel like my body is deteriorating before my very eyes.  I've lost weight.  And muscle.  Yes, I look like a weakened cancer patient.  For years, I've had the luxury of being a cancer patient, yet appearing to be relatively healthy (except for the bald head.)

Although the steroid fog is improved, I am still not myself.  I don't seem to be able to control my emotions.  Everyone and everything seems to aggravate me, and I've not been nice.  This doesn't help the family to want to help me.  I wonder if I'll ever get better!  Will I ever have a clear head again?!

I was told by the radiation doctors that I "may experience some diarrhea."  But I did not expect it to be this bad.  Perhaps, in my mind, I thought it wouldn't be that bad, so I didn't take the warning seriously.  There was nothing I could have done differently anyway.  The whole 2 weeks I was receiving radiation treatments, I only had a slight "change" in my bowel habits.  The 2nd week, I did feel very tired.  It surprised me, because the first time I had radiation (14 years ago, to the chest) it was oh so easy.  I had no side effects whatsoever.  I attributed that to the fact that I had just completed a pretty rough course of chemotherapy, and so the radiation was easy.  Guess I expected to breeze through this time also.

Dr. Coscio explained that everything I'm experiencing now is from the radiation to the spine and iliacs.  And the steroids (the mental craziness, and thrush.)  She showed me my "radiation field," which was interesting!  It was a x-ray CT scan-like view on the computer screen of the area of my body that was radiated.  The structures were outlined in a color-coded fashion, and the color key indicated how much radiation each area received.  She pointed out that it was a very large area that included quite a large portion of bowel.  My bowels have been damaged!  She said this could last for 2 weeks after the completion of radiation.  She explained that there is quite a big difference between radiation to the spine (and hence bowels) and radiation to the chest which is much more superficial.

Right now, I am at the end of the first post-radiation week.  I can't believe the diarrhea is lasting this long, and so severely.  Wow.

Next week, I have an appointment with Dr. Moulder, downtown, to discuss the next step in my treatment plan, a clinical trial.

Thursday, March 13, 2014

Really struggling...battling feelings of hopelessness & despair. Not getting along with anyone, not feeling well. Run down, tired, worn out, angry. Almost exclusively reading scripture and inspirational stuff, yet still feeling so so low. And totally useless and purposeless, and God, why am I still here on this earth??  Everyone is miserable around me. I'm miserable to me!  I can't even think straight. My mind can't seem to focus or figure anything out.  I have no control over my thoughts or words or feelings. Yet everyone holds me accountable for everything. I am still responsible for myself, even though I don't have the mental capacity to be. Don't you see, I'm no longer the right person for this job. These wife /mom /business owner positions. Lord help me get through this very dark stage in life

Wednesday, March 12, 2014

Trying to remain positive

Well I think the combination of steroids and sleeping aids are making me crazy!  At least I hope that's what it is, because if not, I'm definitely heading for the loony bin.  Just been feeling doomed and hopeless.  Aggravated at everyone and everything.  Why won't people leave me alone, and why aren't they calling, don't they care?  All at the same time!  I'm also feeling quite fatigued ... I guess due to the radiation?  And probably exacerbated by the lack of good solid sleep.  Every activity seems to take an awful lot out of me.  I'm trying to be happy with the littlest of accomplishments, as far as stuff around the house and running errands and such. Feeling like I'm unable to handle my own life right now.

So with much purpose, I will leave out my whining and complaining, and I will outline some of the blessings I've received this past week...

My worries about how in the world I was going to handle a new treatment regimen in the coming weeks, alone, since Danny now has a job outside the Pink Ribbon Shop (more on that later ... remember, I am concentrating on the positives this post) has been addressed by my wonderful sister-in-law, Lisa.  Danny's brother Dwayne is in the Coast Guard, and is stationed in Slidell, LA.  As God would have it, Dwayne has been assigned to a temporary position here in the Houston area, about 1 1/2 hours from us.  Lisa is able to stay with him in the hotel, and has offered to accompany me to my clinic visits, at least while Dwayne is still here in TX, since Danny will have to be working.  This has taken a tremendous load off my shoulders!  It is the unknown that is the hardest part.  After I complete radiation at this week's end, I will be starting on one of 2 treatments:  either a clinical trial or a new chemotherapy drug.  After much deliberation and discussion (thanks also to Lisa for providing some clarity on the decision-making, as well) I've decided to pursue the clinical trial (again, more on that later.)  The clinical trial that Dr. Coscio has in mind for me will require me to go to the downtown main campus of MDA -- a more inconvenient and longer drive than my weekly chemo's to the MDA Woodland's location.  I wasn't keen on going alone because firstly, it's going to be a totally new treatment to me and I don't know what side effects to expect.  Secondly, I don't trust my current state of mind, or my chemobrain, to "get" everything I'm supposed to.  Just looking at the schedule alone of the testing, med administration, etc of the clinical trial made my eyes glaze over and overwhelmed me, which is why I initially said "no, I can't do this."  But with Lisa able to go with me, I feel much better about it!  God's timing is definitely at work here, and for that I am thankful.

Last weekend, my other brother-in-law, Darryl, celebrated his 50th birthday with a family/friends crawfish boil.  I love boiled crawfish!  Our family usually gets together a few times a year during crawfish season, and it's always a good time.  For the past couple of seasons, I've been unable to peel my own crawfish, due to the fingernail issues caused by Abraxane.  Although I love the taste of crawfish, it is disheartening to have to have someone else peel your food for you, like a child!  Well this time, since my fingers have healed up, I peeled my own crawfish!  Woot!  So I was able to have the whole crawfish boil "experience"!  Ahh, the little victories, right?

Last week, a band mom friend of ours provided a gift card to one of our local pizza places.  Our family took advantage of that, pronto!  We love pizza.  It was nice to get out and not have to worry about cooking or cleaning.  And this week, Bethany's friend Tyler's mom provided us with a home-cooked meal of pot roast complete with vegetables and gravy!  That fed our family for 2 dinners and there's more leftover for at least an extra lunch or two.  These little gestures really mean a lot to us, and so practical too!   I continue to receive offers of help from others, too, and it may be time, soon, for me to learn to be more accepting of the help.  And be more specific as to how they can help.

It is times like these, when I am personally at my lowest, that I feel like God is truly the only thing holding me up and keeping me going.  I am glad that at least today, I can see His hands reflected in the people who are present in our lives.

Tuesday, March 4, 2014

Not necessarily doomed!

In this world you will have trouble ...

After receiving the news Friday, I admit that we were pretty bummed!  I had a really nice girls day out / birthday luncheon with all 3 of my girls on Saturday, which definitely helped take my mind off things.  We laughed a lot and didn't talk about the big C.  My worries lingered though, both before and after lunch.  I shouldn't have, but I later reread the radiology reports, which made me feel doomed!  But I'm realizing that I'm not necessarily doomed.  I've been in this situation before, where all the tests indicated that I was on a fast track to death by cancer.  That was 8 years ago!  I just have to move forward with the new treatment plan and hope and pray for the best.

Dr. Coscio put me on some relatively high-dose steroids for now and the duration of radiation therapy, in an effort to reduce some inflammation seen around the epidural protrusion of the spinal bone mets.  I think this is helping!  I still have some weakness in the left leg, but not nearly as much pain. And I'm realizing that I feel much better than I look on paper!  On paper:  doomed.  In person:  a little tired, but alive!  So I need to keep things in perspective.

Radiation yesterday was easy-peasy.  Just as I remember it when I received radiation therapy to the chest 14 years ago.  Because of the location this time, I was told that I may experience nausea and diarrhea.  This would probably occur toward the end of the 2-week course because some of the radiation would inevitably hit some digestive system areas.  Fingers crossed that this doesn't happen, or if it does, it's not too severe or longlasting.

I so so appreciate all the outpouring of support and prayers I've received from friends and family.  It really is uplifting and encouraging to know that so many people care.  I feel God communicating with me as well.  It seems like every song on KSBJ is speaking His words to me!  It may sound silly, but God's word in Christian music has a way of really ministering to me in times of need.

... But take heart!  I have overcome the world!  (John 16:33)

Saturday, March 1, 2014

Cancer Progression

This past week I had my routine CT of chest, abdomen & pelvis, chest x-ray, and bone scan.  After some new disturbing symptoms developed a couple of weeks ago, an MRI of the pelvis and lumbar spine were also ordered.  Yesterday I saw Dr. Coscio and received the results.

I had been feeling generally good, albeit with low energy levels, considering being on chemo for over a year.  However, a couple of weeks ago, I noticed a pronounced weakness in my right leg.  It was difficult for me to lift my leg (flex at the hip,) as if my leg was unusually heavy.  A few times in one day, my leg "gave out" while walking.  It was difficult for me to go up steps.  Or down steps.  I also had pain that encompassed what felt like my entire pelvis on the right side.  I knew that something wasn't right.

In retrospect, this had been coming on for at least a couple of months.  I noticed that I was having trouble getting up and out of the bathtub. Or up from the toilet.  Ever being down on myself for some reason or another, I had decided that my lack of exercise was resulting in decreased muscle tone and loss of muscle tissue.  I needed to start exercising!  And so I did.  I went for a neighborhood walk with Christa.  One brisk walk, and I even threw in some short intervals of very light jogging.  I don't remember the duration of time between this walk and the onset of my new symptoms.  Maybe a week or two?

Regardless of the timing, the new symptoms presented themselves and caused me to immediately panic.  And do some internet research!  I diagnosed myself with femoral neuropathy.  I knew that Abraxane caused neuropathy, but usually in the hands and feet.  Perhaps being on it for so long it could cause other neuropathies as well?  Or perhaps I was having some sort of mechanical compression of the nerve, causing my leg weakness and pelvic pain?  I notified Dr. Coscio, and she added the MRI's to my test schedule.

For the past several scans, things have been relatively stable.  Slight growth here and there, but not significant enough to warrant discontinuing Abraxane.  Most areas, including the widespread bone metastases, were relatively stable.  Tumor markers creeping upward, yet still within normal limits. But my hair was growing back and that coupled with my new symptoms really ramped up my anxiety levels of this round of tests/scans.  I'm always anxious around test time, but this time I was really worried.

I've been with Dr. Coscio since I first started Abraxane in 2012.  She has never had to be the bearer of bad cancer news to me.  Until yesterday!  The reports she described and the "films" she showed us (computer images of the tumors, etc) were similar to the devastating ones we received when I was first diagnosed with stage IV cancer in 2006.  The details are different, but the widespread nature of the cancer growth (and my feelings of doom) are not.

For starters, my CA15-3 tumor markers are now up to 22.6.  A graph illustrates its slow but steady climb in the past year from 11 point something to where it is now.  The CT of the chest shows significant growth of several lung nodules, and also a small pleural effusion.  The CT of the abdomen and pelvis shows significant growth of several metastatic lesions on the liver.  MRI of the pelvis shows "diffuse widespread bony metastasis of the bony pelvis and bilateral proximal femurs."  And here's the kicker... The MRI of the lumbar spine shows "penetration of the metastatic process through the inferior dorsal aspect of the L3 vertebral body, creating an epidural tumor extension... with neural foraminal encroachment on the right."  This means that tumor is creeping out of the spinal vertebra and into the epidural space of the spine, hence causing disruption/compression of the nerves exiting at the L3 level -- the very nerves responsible for the hip flexor muscles and other leg functions.  *A sinister explanation of my symptoms*  Additionally, the report's impression reads "Progressive metastatic disease in bone marrow throughout the region imaged including the lumbar spine, sacrum and both visualized innominate bones."  And there's more, but really there is no need to go on.

So, here's what the plan is.  Starting Monday, I will receive 10 days of radiation to my lumbar spine and sacro-iliac areas.  Dr. Coscio is discontinuing the Abraxane -- this is obviously no longer working.  Instead of Zometa, I will begin Xgeva for the bone mets.  Clearly the Zometa has also stopped working!  There are two clinical trials involving combination chemotherapy and hormone therapy that she thinks may be a good fit for me.  If there is an opening in either of those, I will join in.  If not, I will switch to Erebulin, a chemotherapy agent similar to Abraxane.  I should know sometime this week which direction we will go.

It's been a heck of a week!  I am tired, so will stop for now.

Thanks for reading, and for your prayers.