Tuesday, December 9, 2014

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!

Sunday, November 16, 2014

Update ... and here's to more birthdays!

Well it's been several weeks since my last post, and I am feeling better than I have in a long time!  I seem to have more energy (although I do get worn out and short of breath on exertion.)  I don't have any mouth sores, and the neuropathy symptoms have almost completely resolved.  Of course, living with the gray cloud of cancer always hanging over me, I can't ignore the fact that I'm on a dose of Afinitor that's 50% less than originally prescribed.  So I feel bad, for feeling so good.  I feel as if I'm not doing everything I can to fight the cancer ... like some sort of failure as a cancer patient, not being able to tolerate the full dose.  I communicated this (well, not in those words) with Dr. Coscio and she said "It's OK to feel good.  Maybe you're feeling good because the cancer is improving."  She can always find comforting words for me, even when I'm stressing!

Backtracking a bit, to bring you totally up to date ...

Once the thoracentesis was done it was over four weeks until my next appointment with Dr. Coscio... which seemed to me like an awful long time!  In the meantime, the burning question I had about the thoracentesis needed to be addressed, so I took to the MDA messaging system.  Why did my lung NOT re-expand after the procedure?  Answer:  Possibly because it had been squeezed for so long that it wouldn't readily expand back to "normal."  Perhaps returning to chemo will help it heal, soften, and re-expand.  Okay.  I can accept that, but I still don't like it!

The follow-up thoracentesis was done two weeks after the first (still had not seen the doc.)  The report noted that the pneumothorax had resolved, and that I had a "moderately large left pleural effusion."  WHAAAAT??  I was so confused.  If the pneumothorax had resolved, did that mean that my lung had re-expanded to fill the space?  Or had more fluid filled said space?  Since this report made no comparison to the previous x-rays done on the day of the thoracentesis, I wanted to know if this was a re-accumulation of fluid, or if some fluid was leftover in the pleural space, even with having the procedure done.  Answer from Dr. Coscio:  the area had filled with fluid again.  :(  NOT WHAT I WANTED TO HEAR!

This was very discouraging, to say the least.  I had read that pleural effusions related to cancer are highly likely to recur, but I did not expect it to happen so quickly.  But interestingly, I was feeling better.  None of the symptoms I was having prior to the thoracentesis had recurred.  Virtually no coughing, no fever, ease of breathing, etc.  It didn't really make sense.  You know me, I'm always trying to figure it all out!  The doctor said that if I started having symptoms again, we would "address it."  I presumed she meant by repeating the thora and/or changing chemo's.

Finally my doctor appointment day arrived.  The four weeks between visits really seemed to stress me out.  I guess because I had so many questions and worries.  Even though we communicated by messaging, I guess I needed the face-to-face.  Call me a needy patient!  Under the circumstances I suppose my feelings were understandable.  I updated her on how I was feeling, and my concerns about the quick recurrence of the pleural effusion.  She showed me the "films," digitally, of course, on the computer screen.  She also pulled up my previous CT of the chest, for comparison.  Even though fluid had returned, the volume/size of it was nowhere near the size it had been right before the thoracentesis.  That comforted me.  It also explained why I wasn't having the symptoms I was having before.  The pleural effusion, although recurrent, wasn't nearly as "large" as before.

My tumor marker (CA 15-3) had increased from 16.7 on 9/17 to 20.8 on 10/28.  Dr. C felt that it was too early to tell if the new dose of Afinitor was working or not, based on the tumor marker alone.  So, she advised me to continue on the Zolodex, Aromasin, and Afinitor, as previously planned.  However, considering my concern about not doing enough to battle my cancer, and my request to possibly increase the dose a little, she said I could TRY to take 10mg once a week and 5mg the rest of days of the week.  I agreed to try.

When she first prescribed  the 50% reduction of Afinitor, I only had the 10mg tablets, and it was going to take at least a week to get the 5mg tabs in from my "specialty pharmacy."  So I took a 10mg tab every other day until my 5mg tabs arrived.  At around day 7 of this regimen, I began to develop a few mouth sores.  Yikes!  My 5mg's arrived on day 9, so since then I've been on 5mg per day (except for one day per week that I take 10mg.)  The mouth sores have improved and disappeared!  Yay!  I tried to think of some way to explain all of this, but really, what purpose would that serve?  I need to just go with it ... I'm in treatment, I'm feeling pretty good, with no mouth sores.

And now, I wait.  Because of all the recent cancer-related activity, Dr. C decided to scan me with just a two month interval instead of the usual three.  I'm scheduled for the usual CT's, bone scan, and labs in the first week of December.  Anxious to find out if the new dose is working!!

Meanwhile ... I just celebrated another birthday!  Who cares what the number is, the fact is, I just celebrated another birthday!  I'm doing everything I'm capable of doing, and trying to live life to the fullest.  My life's not perfect, by far, but at least I'm here to live it.  As 2014 is winding down, it occurred to me that 2-3 times this year, I thought I was nearing the end of my life.  But each time, God pulled me out and said "Nope.  It's not your time to go yet."  It was just not His will for my life to be over here on earth.

Sooooo, here's to more birthdays!

Wednesday, October 8, 2014

Adventures of a Stage IV Cancer Patient

Soooo, it turns out that the feelings of lung improvement (cough, etc) and ability to eat more was a very short-lived phenomena.  :(  It lasted maybe about a week before I started having severe indigestion again.  I always felt full, even if it had been hours or an entire day since I last ate.  One day, I had a donut for breakfast and I swear, I burped that donut the rest of the day!  The most uncomfortable thing was "the growling."  This was happening before and I thought it went away.  But I've figured out that it went away only because I basically stopped eating.  As soon as began eating food again, "the growling" returned.  Danny called this the "bear in my throat."  That's what it sounded like!  Barely audible to others when my mouth was closed, the growling bear was quite embarrassing and rather loud when my mouth was opened, such as during conversation!  Weird!!  So the eating had to stop.  Nothing sounded good, and it felt like nothing was going down.  I struggled to even take in liquids, although liquids went down much easier than any sort of solid food.  More weight loss ensued.

I had also just told my doctor that I thought my coughing had improved, and I was no longer running a low grade fever.  No sooner had I said that, when it all started coming back.  I was having to take a sleep aid, nightly, (which I don't like to do!) just to get some sleep.  It took me a while to "settle down" once I got into bed.  Laying down would induce a lot of coughing and shortness of breath.  I was only comfortable in a very specific position.  Not on either side because I couldn't breathe well.  Not on the back either. Somewhere in between I'd have to find that just right position where all was good.  Then I'd just hope to fall asleep fast and stay asleep all night (thank you, Ambien CR.)

CT scans of the chest, abdomen and pelvis were done, as well as a bone scan.  The 5 days between scans and my doctor appointment were excruciatingly long this time, because I knew it wouldn't be good.  Based on how I was feeling, my hopes of the 2 drugs working had faded.

I gave the nurse and doctor a quick run-down of the symptoms having returned, and of course they noted my additional weight loss.  Dr. C. showed me the CT scan.  The pleural effusion (fluid around the lung) had increased significantly (up from "large" on the previous scan.)  There was so much fluid, in fact, that my lung was squeezed down to a very small version of itself.  There was way more fluid than lung, to say the least!  Additionally, the fluid was pushing my esophagus over to the other side of my chest, actually turning it to a direction it doesn't normally go and causing it to be KINKED!  It was no wonder that I couldn't eat!!  Other findings included enlarging nodules in the lung and new & enlarging nodules in the liver.  :(  But the bone mets were stable ... yay?!

Dr. C. recommended immediate treatment change, preferably to an IV chemo that would work quickly.  She was especially concerned about my weight loss and inability to eat.  She mentioned me having the lung fluid drained (thoracentesis) but recalled that I wasn't too keen on the idea.  Prior to this appointment, Danny & I had discussed that perhaps I should have it done because the coughing had gotten so severe and frequent -- basically non-stop.  I told Dr. C this and she said if I agreed to the thoracentesis, we could go with the previous plan of getting back on Afinitor, this time at a lower dose to try to stave off the mouth sores.  This is the plan we chose.

The thoracentesis was scheduled for the following morning.  I finally took my Mom up on her multiple offers of coming over to help.  I asked if she could come that very evening, and she said of course, dropped everything she was doing and caught a flight from N.O. to Houston.  She's the best!  We definitely needed the help! 

With breast cancer awareness month, our busy season, in full swing at The Pink Ribbon Shop, Danny simply couldn't miss yet another day of work in the same week.  Based on last year's dismal sales, we did not bring in extra staff this year to help with order filling.  It was a rough year of scrimping and saving in every way we could.  We really did not want Danny to have to go get another temporary position in the Spring like last year, so we thought that he and Lisa, our only other employee still with us (thank God for her!) could handle orders if sales were about like the previous year's, ultimately saving us tons in payroll.  However, this year we have been super-blessed with sales through the roof ... which is amazing and awesome and thank you God, but very difficult to manage with a limited staff and my increasingly demanding healthcare needs, not to mention the "normal" demands of a family with three busy, active children.

My mom and I drove the hour to the Woodlands for my thoracentesis appointment.  I had asked Dr. C. about sedation, because I was very afraid of this procedure -- she assured me that I would be sedated.  But this was not to be.  When they took me into the room, I was informed that they don't provide sedation for a thoracentesis, just a local anesthetic.  This really freaked me out!  I briefly considered backing out (and actually told the nurse that I no longer wanted to have it done,) but knew that it was necessary.  I "put on my big girl panties" and agreed to proceed.

I was put in a room, on a stretcher, where I waited for a couple of hours!  Good thing I called my mom in, so I wasn't alone all that time.  We always have fun together.  There was a table in the room that was set up for THE PROCEDURE.  An ultrasound machine was at the bedside.  Nearby there were 2 large glass containers.  I jokingly said to my mom "I bet I can fill those," trying to make light of my scary situation.   At some point it was getting so late that I had my mom go call Danny and others to update them that nothing was happening yet.  While I was left alone, I took the time to pray for God to provide a competent, skilled doctor to perform this invasive procedure that involved placing a needle between my ribs and into my pleural space to drain the fluid.

Eventually they asked my mom to leave and the room seemed to fill with people.  A man, who I assumed was the doctor to perform the "thora" as they called it, walked in and started asking me questions.  He did not introduce himself!  Not cool!  I hate when doctors think they are above me.  You know, doctors put their pants on one leg at a time, just like the rest of us!  So, I asked him if he's ever done this procedure before.  I said it in a joking way, but I'm pretty sure he was shocked.  He was an older gentleman, and Dr. C said he was great, so I didn't doubt that he was very experienced.  Then I said, "What was your name, doctor?"  I tried to keep it light, yet send a message... Hey, you're not God, the least you can do is introduce yourself to your patient.  Maybe he got it, maybe he didn't.  But I tried.

The nurse who originally told me that there would be no sedation stood right in front of me (I was sitting on the side of the bed, legs hanging) and allowed me to hold her hand.  I'm pretty sure I squeezed the life out of it!  I was grateful for her caring attitude and encouraging words.  Before starting, the doc placed the ultrasound transducer on my side/back to take a look at where he would be placing the needle.  He told me that it looked like I had "quite a bit" of fluid in that lung.  He asked if I'd had any shortness of breath.  I said "Only when I DO anything."  He and the nurse talked to me throughout the procedure (well moreso the nurse, but he didn't do too bad!) and so I was kept up with what was happening and what to expect.  The local anesthetic injection stung a little.  Not too bad!  Then he said I'd feel a little pressure, but actually I didn't feel anything.  He then said "Ok, you're draining."  I looked to my side to see one of the glass containers filling with a rust-colored thin liquid.  I didn't even feel the thoracentesis needle!  Woohooooo!

After a minute or two ... not really sure of the time ... I felt an odd sensation just left of my sternum, then I started coughing.  And coughing, and coughing.  They said I could expect this as the fluid was drained and the lung re-expanded.  It was overwhelmingly involuntary and seemed to go on way too long.  The nurse assured me this was normal.  Then they re-checked the fluid level with the ultrasound transducer and, I suppose, concluded that enough was drained out.  The tube was removed.  Being a former nurse, and that I had seen the glass containers beforehand, I was really curious to know just how much fluid was removed.  Even my joke about being able to fill the containers couldn't prepare me for the fact that I actually DID fill both of them.  A total of 1900ml, nearly 2 LITERS of fluid was removed from my left lung.  Oh.  Em.  Gee.

It's no wonder that in the preceding months, I "didn't feel well"!!!

A chest x-ray was done immediately after the thora, per protocol to check for a pneumothorax, a potentially dangerous outcome. To my surprise, they informed me that my lung had not re-expanded, and so they would repeat the chest x-ray after a couple of hours.  I was still coughing some, so that didn't make any sense to me since I was told that the coughing would be due to the lung re-expanding.  In any event, I was to be there on the stretcher for at least another 2 hours.  This turned into 4+ hours because each successive chest x-ray showed the same thing:  failure of my lung to re-expand.  Disappointing!  I was hoping for a big fix with this nasty procedure.

It wasn't until later that evening that I realized that God had answered my prayer ... precisely!  I definitely had a competent, skilled physician who did an excellent job at not hurting me during the procedure, and I had no complications (at least none that could be attributed to his performance.)  I did NOT pray for a super-friendly, down-to-earth doctor who would wow me with his bedside manner.  Interesting!!

My mom drove us home, and I rested the rest of the evening, and I felt pretty good, just kind of worn out from the day's events and stresses.  The next day, I was amazed to discover that the growling, the "bear in my throat," was completely gone!  I speculate that I may have actually "felt" my esophagus straightening out as the pressure of fluid that was displacing it was removed.  I no longer felt like I was full.  It was a definite change for the better, and so quickly, too!  Amazing.

Additionally, laying on my back was no longer uncomfortable.  I didn't feel a pressure on my chest or have difficulty settling into bed and finding a comfortable position.  I was breathing much easier when lying down ... and I could breathe pretty well from ANY position.  Leaning over or bending down to pick up stuff (which, as a mom, I seem to do an awful lot of!) no longer induced a cough.

I still had a cough, which both concerned and disappointed me.  But it had a different quality to it, and overall I felt better.  In fact, after having the pleural effusion "tapped," I realized how BAD I had been feeling for some time.  I guess it came on so gradually, that I had just grown accustomed to it and didn't realize how sick I actually felt.  When you have 2 extra liters of pleural fluid ... it doesn't feel good!  Just sayin'! 

It's been a week since my thoracentesis.  My appetite is improving, and I am able to eat more than before, but I seem to be having trouble gaining any weight.  I FEEL like I am eating a TON, but I'm actually eating small portions.  Small portions of a bigger variety of foods, but small portions nonetheless.  I even went OUT to eat over the weekend.  So delicious!  And so I thought I was done with Boost supplements, but it looks like I still need them.  I finally broke down and ordered the VHC Boost (very high calorie) because as much as I think I am eating, it is still not enough and I am still very thin.  I now weigh less than my teenaged daughters, and it is not a good look, trust me.

My mom stayed in town from Wednesday through Sunday.  During that time, as I said before, we went out to eat, and we also went to watch my girls at the high school football game.  My oldest daughter and her crew also came! Fun!  So thankful for all I'm still able to do, even though I wear out quicker and easier than ever.  Here are some pics from my fab weekend!


 

 

I started back on Afinitor (at a reduced dose of 50%) 6 days ago.  Yesterday, I developed a single mouth sore on the inside of my bottom lip.  I'm so scared that they will take over my mouth (and life) again.  And yet, I am hopeful that maybe I'll just have one or two at a time.  Since restarting Afinitor, I've been focusing on excellent and thorough mouth care, ie rinsing and/or brushing after meal and swishing with a baking soda mouthwash to try and nip the mouth sore issue in the bud before it gets out of hand!  Please pray that I can keep it in check so I can continue this treatment ... and that the treatment works!

Sunday, September 21, 2014

Enjoying food again! Anxiously awaiting next scans.

Well, I made it through another cancer-induced PIT!  I feel somewhat silly for the extreme feelings of doom-and-gloom I get when I experience a traumatic event involving effects of the cancer or side effects of its treatment.  It's easy to say that now that all of my mouth sores have healed (actually I still have one lingering sore on my tongue) and I am able to eat real food.  But when I'm IN the moment, it's bad.  It was a very trying time, for me and my whole family.

I wasn't able to eat, even soft foods, so my diet consisted of a liquid diet that included Boost and Boost (original and high-protein.)  I had to medicate myself before I could even drink.  I lost nearly 15 pounds, and let me tell you, I do NOT recommend this cancer diet.  Most women I know would say that they'd like to lose a few pounds, myself included, but this has surely been the most unhealthy weight loss I've ever had.  In what seems like a very short time, I've lost a large amount of muscle and fatty tissue, which has completely changed my figure.  I have no butt!  It's totally flat and I can't keep my pants from falling off, even the smaller-sized pants that I had to dig out of the shadows of my closet, because there is nothing to help hold them up.  I've never been really big in that area, but have always had at least a little shape.  No longer.

I'm concerned that I have cachexia, a wasting type of syndrome commonly seen in cancer patients.  We've all seen someone with this.  Their pants just droop off their butts, they are very thin and have little or no muscle mass.  The body gets in the mode of breaking down tissue as opposed to building up and rebuilding.  One of the bad things about this is that it can, once it gets set in motion, actually continue to occur, despite a return to adequate caloric and nutritional intake.  This can eventually, directly or indirectly, lead to death.  In my case I can see how it would  it would hinder my body's ability to successfully deal with toxins (such as chemotherapy) and fight/heal side effects (such as mouth sores.)  Scary!!!

I, however, am doing my part by eating ... a lot!  Well as much as I am able -- I physically cannot eat as much at a time as I used to.  Two plus weeks of little or no real food, then a diet limited to soft bland foods and lemon-less iced tea has driven this spicy-&-flavorful-food-loving Louisiana girl to her sad, sad breaking point!  I'm thoroughly enjoy eating and have even gained a couple of pounds.  In light of the past few weeks, this is a good thing.  I don't believe I have ever in my life been happy about gaining a couple of pounds!

Soooo .... the plan, while I was deep in the throes of severe mucositis, was that I would stop Afinitor (the culprit!  grrr!) for 2 weeks while the sores healed.  Two weeks fell on a Saturday, and I had a follow-up appointment with Dr. C on the following Thursday.  I took it upon myself to wait to restart until I discussed the options with Dr. C.  It's been 3 months since my last scans, and in Dr. Kim's opinion, the scans needed to be looked at before I got back on Afinitor for a week or two after only being on it for a week in the first place.  This was presented as an option by Dr. C, and I agreed.  I'm scheduled for a CT of the chest, abdomen and pelvis, and a bone scan 4 days from today.  Results will determine where we go from here, treatment-wise.  Praying for tumor and pleural effusion shrinkage ... or at least stability!  This would indicate that the 2 drugs (of the 3 prescribed at time of last treatment change) that I have remained on may be working even without the Afinitor.  This would be great news for me!  BUT, I am willing to give Afinitor another shot, despite the mouth sores.  It would be at a reduced dose, so that may help.  A lot to think about!  A lot to worry and stress about!  Trying to leave it all in God's hands ... I know he's got me, but this is not easy.

Tuesday, September 2, 2014

Quality of Life Issues

Despite using the baking soda mouthwash and "magic" mouthwash recommended by Dr. Coscio, the mouth sores continued to worsen and multiply.  My weight has steadily decreased because I am unable to eat -- even drinking water is painful.  I'm unable to talk due to the pain.  I am using the "magic" mouthwash (a combination of Maalox, Benadryl and viscous xylocaine) before my "meals" which consist of Boost meal replacement drinks and the occasional vanilla yogurt cup.  I was seen by Alicia, Dr. Coscio's APN, who advised me to discontinue the Afinitor for one week.  According to my research, stomatitis (mouth sores) is Afinitor's most common side effect.  She also prescribed Valtrex, an antiviral drug, because after examining my mouth she thought it looked more like a viral infection instead of stomatitis.  Interesting.

Today is Day 5 on Valtrex.  Thankfully I haven't seen any MORE sores (last count was 8,) but the existing ones don't seem to be going away.  I'm in so much pain!  And not just when I eat or drink or talk.  So in addition to rinsing with magic mouthwash before meals and at bedtime, and the baking soda mouthwash in between, I am also taking a pain med.  I try to limit this to twice a day because it makes me a little sleepy.  It does help to take the edge off the pain. 

Honestly, it's been really hard to keep my spirits up this week.  I had to miss the girls' first football game (they're both in marching band,) and I didn't go to church either (where Bethany was playing drums.)  I cancelled my parents' Labor Day weekend visit here because I'm in no shape or mood to have company in the house.  Danny is doing everything around the house (thankfully!) because I feel like you-know-what.  My days revolve around my mouthcare regimen and managing the pain.  I'm feeling so discouraged that the sores aren't going away.  The thought of starting back on Afinitor in 2 days makes my stomach turn.  I don't want to live like this.  In pain and unable to eat is not living.  It's actually a pretty miserable existence.  I don't want to be the mom who sits miserably on the sofa all day.  I do still try to converse with the kids about their day, etc., but I sense that they're uncomfortable with me being so uncomfortable.  And my sweet little David ... he asks me every day "Are you feeling better, Mom?"  "Is the medicine helping, Mom?"  He just wants to hear me say that I'm all better.  It's heartbreaking.

Let's say the sores eventually do go away.  I don't think I want to go back on Afinitor.  The literature says that 67% of patients on it get mouth sores.  Mine are so severe -- large and painful -- how can I possibly go back on the drug that most likely caused this very painful side effect?  Similar to the neuropathy caused by Eribulin, it's a quality of life issue.  However, with Eribulin, the decision to discontinue it was made easier by the fact that it wasn't really working on the cancer anyway.  Afinitor hasn't even been given a chance to work.  I am scheduled to be re-scanned in October.  I was only on it for about a week before the mouth sores began.  Deal with the mouth sores until then ... no way!  And then if the scans are good ... live with mouth sores and inability to eat and talk, what, indefinitely?  I should be hoping for good scan results, but not dreading living like this.  I suppose it's a predicament only a fellow cancer patient can fully appreciate.  To the healthy outsider, it is easy to think that I should just suck it up and tolerate the discomfort if the drug that's causing it affords me a longer life.  But again I say, this is no way to live.

I am praying a lot, and I have lots of family and friends praying for me.  Right now I'm being very specific by asking God to take these mouth sores away.  I ask that you pray for the same!

Tuesday, August 26, 2014

The Latest from the Cancer Front

My long-awaited appointment with Dr. M to discuss getting on a clinical trial finally happened a couple of weeks ago!  After a VERY long wait to see the doctor, what she presented was not what we expected.  She said that currently there were no clinical trials available for me.  :(

However, she did offer me a couple of options.  The first option is another shot at hormone therapy -- a combination of three drugs.  (1) Aromasin - I've taken it in the past and it didn't work.
(2) Afinitor - I have not taken this before.  It's supposed to work in concert with Aromasin, somehow addressing cancer's resistance to hormone therapy.
(3) Zolodex - I took it for 4 years in conjunction with other hormone therapies.  It's a monthly injection that works to shut down the ovaries' estrogen production.  The thought is that even though I've not menstruated in several years (as a result of various breast cancer treatments,) my body may, in fact, actually be producing estrogen.  If that is the case, then my cancer is having lots to "feed" on, hence its recent significant growth.

The second option is a chemo drug called Doxil.   This is a potent chemotherapy drug closely related to Adriamycin which I received 14 years ago as part of my initial breast cancer treatment.  Doxil is supposedly less cardiotoxic than Adriamycin, although the literature is very scary regarding its potential cardiac effects!  It also has many other nasty side effects ... soooo, I decided to try the hormone therapy route again (as explained above.)

I was able to start Zolodex and Aromasin right away, but  it took over two weeks to get my insurance to approve Afinitor, the most important part of the drug trio!  So frustrating!  I am finally taking all 3.  Yay!

In the interim, I was stressing out because for over 6 weeks, I was on NO cancer treatment.  This was a result of my week-long vacation, having to stop previous chemo because of severe neuropathy, and multiple brief waits for doctor appointments that just added up.

Additionally, for a few weeks I was running a low-grade fever of mostly 99's, 100's and the occasional 101.  Often I would feel a little chilly, and that's when I would check my temperature and discover the fever.  I had a nagging dry cough that was getting worse.  I'm pretty sure the coughing was just as aggravating to my family as it was to me!  I reported this to Dr. P and she ordered a chest x-ray and prescribed Cipro.  She said that I may need to consider thoracentesis if the coughing didn't improve.  I am not too keen on this!!  It's an invasive procedure that involves placing a needle or tube into the pleural space of the lung and removing fluid.  Yuck, yuckity, yuck yuck.  And, what I've learned from my reading is that the drainage ALWAYS needs to be repeated in the cases of pleural effusion caused by malignancy.  I don't want to start that!

The chest x-ray showed a large pleural effusion, which we already knew was there.  BUT, the radiologist reported that an underlying infection could not be ruled out.  A few days into the 7 days of Cipro, my fever shot up to the 102's and stayed there for a whole weekend.  The coughing was so severe that I was actually considering having the effusion drained.

And then, the fever subsided!  I guess the Cipro did its job and handled whatever infection I had.  Dr. Kim thinks she had pneumonia!  Since then, the coughing also has almost completely subsided.  Go me!

I was beginning to feel pretty good, better than I had in a while.  My foot is healing, although still a little sore when putting weight on it.  The coughing, as I said, is much improved.  My hair is growing back, which has perked my psyche up a bit.   Unfortunately I recently began having severe indigestion which has decreased my appetite and prevented me from eating much.  Guzzling the Mylanta, because I have a lot of gurgling in the throat/upper chest area.  I've lost some weight, but not really in a good way.  I'm beginning to look like an emaciated cancer patient!  Also having periodic diarrhea, which can't be good.  I'm a mess!  At my nurse's recommendation, I spoke with a nutritionist who recommended small, frequent meals/snacks, and possibly adding a supplement such as Boost.  I tried to increase my intake after that conversation, and I think it was starting to go well.

But then, about a week after starting Afinitor, I developed a mouth sore.  Most of you know how painful that can be.  For me, they usually just have to run their course before dissipating.  But this time, the "course" seems never ending, and right now I am up to 6!  Tongue, lip, under the tongue, both cheeks, and throat!  Now I really really can't eat.   I am rinsing with what the doctor recommended, but nothing seems to help.  Well, actually, chocolate snowballs feel really good and don't burn at all!   Chocolate malt from Sonic, not as good.  But woman can't live on chocolate snowballs alone.  It's getting to be a problem.

Wait ... didn't I just say that I was feeling better than I had in a while?  In some ways that is true, and for that I am very thankful.  I still have numbness in my hands and feet, but what has improved is the weakness and balance issues in my legs.  I no longer require pushing the shopping cart to feel steady on my feet.  I can walk from the car to the store without feeling like I'm simply not going to make it.  I can go up steps and get into/out of cars without assistance.  I was in a bad, bad place with severe neuropathy symptoms!  If those areas have improved, I am hopeful that I will improve in other areas as well, such as being able to type, open things, and clip my own nails!

Sunday at church, parts of the sermon really spoke to me.  It was on contentment.  I know I have contentment issues.  In Philippians 4, Paul speaks of being content regardless of your circumstances.  Even though my circumstances seem rather grim at times, I still have a lot to be thankful for, so I must dwell on that!

Wednesday, August 6, 2014

My "imperfect," but memorable, vacation

Vacation is over, and my long awaited appointment with Dr. M regarding clinical trials was last week.  So lots of news to report!

Danny & I had a nice time on our vacation DESPITE our circumstances.  It helps to have a sense of humor!  But sometimes it's difficult to find humor in a situation until after it's past.  If you recall from my last post, we booked a little cabin in the woods of the Hill Country while the kids were at camp all week.  We prefer a vacation rental that's secluded, as opposed to one that's in a row of cabins or grouped closely with others such as part of a resort or campground-- especially when it's just the two of us and not the whole family.  I, being the executive planner of all family vacations and getaways, take pride in selecting just the right rental.  Good location, yet secluded.  Clean, but a little rustic is acceptable.  Equipped.  Must have a kitchen that allows us to do some cooking. An outdoor grill is nice, too!  Although we love to eat out, it's just not financially feasible to eat out for every meal, such as what you pretty much have to do when you stay in a hotel.  Over the years, we have stayed in a lot of rentals, so perhaps we are cabin snobs.  But I like to think that we are experienced renters and have a good idea of which amenities are more or less standard.  All of that said, I tend to be my own worst critic of the rentals I exhaustively research before reserving.

Upon entering the road/driveway of the cabin, we were excited as usual.  We were off the beaten path in small-town Texas.  As the cabin came into view, the first thing I noticed was a small, about 2-feet-tall concrete gargoyle "welcoming" us from the garden.  Sorry if you're a fan of gargoyles, but I am not!  They make me say "Ewww!"  We press on.  The cabin is quite cute and very secluded.  Great!  We see the hot tub, Adirondack chairs with table & patio umbrella, and toward the property's cleared perimeter, two chaise lounges.  Wait!  What's that beyond the lounge chairs??  OMG it's a GIANT gargoyle!  No lie.  Standing "guard" behind the chaises is a four-foot concrete gargoyle -- facing the chairs!  I was so creeped out!  Needless to say, we never sat in the chaise lounges, the entire 4-night stay.  Who could relax with that monster watching from behind??


However, the cabin's interior is very nice.  Adorable, in fact.  Perfectly-sized for two.  There are some thoughtful little touches, as well, such as homemade cookies & granola, milk & OJ in the fridge, coffee & accoutrements, dvd's, beach towels for hot tubbing, and spa robes to name a few.  I'm thinking "Aww, maybe this place is really not that bad after all."
 
We later discovered that the kitchen, although cute, had no stove!  For cooking, it had only a microwave and portable electric burner.  :(   There goes any thought of cooking any meals.  Thankfully neither of us can eat as much as we used to, so we got by just fine on sandwiches & snacks and the occasional eat out.
 
But this cabin wasn't done with us yet!  There was a hornet nest on the cabin's corner near the porch/door which was also near the Adirondack chairs -- mean & vicious hornets that attacked us whenever we tried to enter or exit.  Danny found some spray inside and sprayed them daily, because every day there were always more!  Consequently we had to buy more hornet spray to keep up with their daily fortifications of the nest.
 
And the kicker:  we were awakened nightly by the sound of a mouse/rat inside the wall of the bedroom closet!  The interior walls appeared well-sealed, so we didn't think there was a possibility of the critter visiting us in bed, but he sure was trying to chew or claw his way out!  In between the chewing/clawing sounds we could hear his squeakity-squeaks.  Eww!  Fortunately for our sleep needs, we only heard him when the air conditioner wasn't running, which in the Texas summer heat wasn't really that often.
 
Danny found a mousetrap in the water heater closet (in the bedroom,) so between that and the hornet spray it was evident that the cabin owner was aware of the issues.  We placed a piece of cheese in the trap and it was gone the next morning, trap unsprung, there being no trace of the critter that ate the cheese.
 
Our plans for this vacation were to relax and enjoy our time together.  We also planned on some driving tours, site-seeing, and perhaps some historic site or museum visits.  We knew that in my current state of weakness we wouldn't be able to go hiking or do other physically demanding activities.  We visited the LBJ Ranch (Lyndon B. Johnson National Historic Park) and took a tour... And I got a stamp for my National Park Passport -- Yay!  (Yes, I'm a national park enthusiast, collecting stamps from every National Park Service site I visit.)  Anyway ... interesting place, this "Texas White House"!

  
Shortcomings aside, the area around the cabin did offer a nice little walking trail through grasses, cacti, and oaks with a divergent pathway to a scenic road, country fence, and a prairie with grazing deer -- nice!
 


Next we took a drive to Marble Falls, a town we've never before visited.  We ate at a restaurant that overlooked Lake LBJ.  Wow!  Gorgeous views!!  Average food.
 
We checked out the nearby Balcones Canyonlands Natural Wildlife Refuge after reading about it online.  Turns out that this refuge was created entirely because of an endangered bird in the area!  I find this to be a little nutty, but what do I know?!  It's a beautiful area, and there are hiking trails which again, we were unable to even attempt.  Can you tell how sad that makes me?!  At some point we found ourselves on this narrow winding road that followed a creek.  We stopped at a scenic area where Cow Creek was crystal clear and there was a small cascading waterfall.  Looked like a great swimming hole and we had it all to ourselves, although we did not swim.  So peaceful and beautiful.  We snapped a few pictures and admired the beauty of God's creation, then headed back to the truck.
 
 
 
 
And then, IT happened.  As we were walking back to the truck, my ankle gave way on the uneven ground, causing my foot to roll outward.  I heard and felt a c-c-crunch on the outer portion of my foot.  I cried and cried and cried, not because of the pain (even though I did have pain,) but because this was my life now.  My once active vacations, reduced to driving tours that couldn't even include a stop at a picturesque creekside location without incident.  I believe I bellowed out something like "This is SOOOOOOOO SAAAAAAAAD!!"  Never having broken a bone or even sprained anything before, the reality of our new existence hit us both like a ton of bricks and we BOTH cried for several minutes.  Weakened by neuropathy caused by a chemo drug that didn't even work, my ankle gave out on the slightest uneven ground, causing me to break a bone in my foot.  I repeat, all from a drug that didn't even work on my cancer!  Ugggh.
 
I could move the foot, and even walk on it, though painstakingly, so Danny thought it probably wasn't broken.  I couldn't be sure, but the crunch sound had me convinced that it was.  Shortly down the road, he very sweetly stopped the truck so I could photograph some pretty flowers.  To move us on from the sadness!  He knows that I always like to snap a pic of at least one example of local flora, wherever we may be visiting.  (Oh and similarly, we like to see how many different animals we can spot when we're on vacation.  This trip:  deer, rabbits, roadrunners, giant lizards, hummingbirds, and hornets!  I know ... we're nature geeks.)  Here's my favorite cheer-me-up flower photo taken just after "the fall."


 
We were well into the nature preserve, so it was going to be quite some time before we were out, and even then, quite some time before we were back at the cabin.  My foot still hurt, but it wasn't excruciating ("see, it can't be broken.")  We pulled off to a scenic overlook gazebo kinda place called "Sunset Deck," and the view didn't disappoint, although we weren't there at sunset.  We were higher up than we thought we were, and could see the snaking Colorado river and Lake Travis in the distance.  Of course a picture, as is often the case, can't do it justice.  Here we enjoyed a private, tranquil (and delicious) picnic lunch before heading back to Gargoyle Cabin.


It was a loooong drive to our temporary home.  Once there, I removed my shoe to discover a large egg-shaped area of swelling and a big ugly bruise on the outer portion of my right foot.  For the remainder of the vacation, I kept it elevated and applied ice packs to it as often as possible.  We watched movies and chilled more than we had planned.  We were good with that!

For the last night that the kids were away at camp, I had booked us a one-night stay at a little inn in Round Top, Texas, so we wouldn't have to drive so far to pick them up in the morning.  We were pleasantly surprised at the beautiful grounds, charming cabin, and historic Lutheran church next door to the inn.  No gargoyles!


 
 
And finally, near the end of our little getaway, we dug in to some world-famous pie at Royer's Round Top CafĂ©!  Yummy!
 
 
Just fyi ... the lady behind me in this pic is eating quail.  I know this because her plate smelled so delicious when it was delivered that I had to ask what it was.  Umm, no thanks, just gimme my pie & ice cream please!
 
 
The foot:  fractured 5th metatarsal.  Doctor's orders:  boot and rest for 4 weeks.  Who has time for that?!  Thankfully, no cast or surgery required.  Woohoo!
 
Wow, I went on so long about the vacation, I've run out of time for a cancer update.  Soon, I promise!
 
As always, thanks for reading.  Hope you enjoyed the pictures.  I've decided to start including more of them so you guys can put faces to the names.


Thursday, July 17, 2014

New Plan ... Renewed Hope!

Interestingly, I came upon a Bible verse that is so fitting to my current struggles, it's uncanny ... but NOT coincidental!  Actually it's more like a prayer.  Isaiah 35:3 says "Strengthen the feeble hands, steady the knees that give way;"  Yes Lord!

My visit with Dr. P this week went well.  I was sort of dreading it, because I anticipated having to be firm regarding my decision to discontinue the Eribulin.  That's a lot of weight for this cancer patient to carry:  stopping chemo that my oncologist deemed was (partially) effective on my cancer.  Fortunately, I didn't have to do it!  Dr. P came in to the exam room and said she really thought I needed to get off of Eribulin since the neuropathy it has caused is interfering so much with my activities of daily living.  She went on to say that all of the remaining chemotherapy drugs available to me were just as likely or more likely to cause peripheral neuropathy.  So, she recommended that I see Dr. M at the MD Anderson main campus downtown to discuss clinical trial options.  She had already spoken to her about me, and an appointment was already scheduled! Why did I ever doubt my medical team at the world's best cancer treatment center??  Or rather, why did I ever doubt that my God HAS this??

Although I'm nervous about the clinical trial ... what kind of drug will it be, what will the schedule be like, what side effects will I experience, etc.... I have renewed hope that perhaps it will work on the cancer!  I've had pleural effusions in the past that have completely resolved after a medication/chemo change.  If that is what God has in mind, He certainly has the power to make it happen!

As luck would have it, my appointment with Dr. M was scheduled during the one week of Summer that we have a vacation planned.  A modest, one-bedroom vacation rental cabin in the Texas Hill Country while all three kids are at camp.  Just me & Danny!  I've grudgingly accepted the fact that our vacations can no longer be of the active type that I've grown so accustomed to.  There won't be any hiking or biking, that's for sure!  BUT what it can be is a relaxing time "away from it all" in the company of my favorite man!  A much needed respite from cancer treatments, tests, scans, needlesticks and doctor visits.  Woohoo!

The controlling side of me was at first upset that the appointment couldn't be moved up to THIS week, and that the next available was all the way to Thursday of the following week.  A quick calculation after consulting my extremely thorough and meticulously accurate "Cancer Treatment" note on my iPhone told me that by the time I see Dr. M, I will have received NO cancer treatment for 4 weeks!  (cue alarm sounds and lights flashing and a woman's recorded voice stating "Too long!  Too long!  Too long!)  But then I remembered that I am in the hands of my savior and that maybe, just maybe, He wants me to have a nice relaxing vacation and spend some quality time with my husband!

As I mentioned in my previous post, I am SO THANKFUL that Danny is no longer working at the accounting firm.  Yes, we needed the extra money, but having him here (at home and at The Pink Ribbon Shop) is so worth it.  With all of my cancer-related issues, I appreciate him having the ability to accompany me to my treatments and doctor visits.  Since the position he had was through a temporary employment agency, he simply completed his temp contract and called it a day.

I am also thankful that it's Summer.  The kids do have activities, but without the added stress and full days of school, it's all a lot more laid back and enjoyable.  One of the things I'm currently enjoying, despite my multitude of neuropathy symptoms, is learning to "sign" songs for our church.  My daughter Christa has been interested in sign language for many years, having first taken a few "sign language dance" classes, then signing in church under the tutelage of another beautiful young woman, and most recently taking two ASL courses in high school as her foreign language requirements.  Tragically, that young woman who began the sign language ministry at our church took her own life last Summer.  This was devastating to our congregation, as you can imagine.  In honor of Anne, Christa decided to carry on her "Hands Held High" ministry.

Hands Held High appealed to me because firstly, it was always so beautiful and powerful when Anne did it.  Then when Christa joined her it was exceptionally so (proud mom talking)!  Secondly, I thought "I'd like to try that."  Since it was clear that I wouldn't be taking any more dance classes or running any more half marathons, I thought this was something I COULD do.  It was Easter of 2013 when I signed for the first time to Big Daddy Weave's "Redeemed."  It was an amazing experience, and I am grateful for that time of getting to know Anne's beautiful heart before her passing.

Anyhoo, what I am really enjoying about signing this Summer is getting to spend some one on one time with Christa.  I still suffer from chemobrain (at least that's what I blame it on) and so I require a LOT of practice and instruction.  So glad I live in the same house as the teacher!  She is an awesome, dedicated, leader, and she is so beautiful to watch ... full of emotion.  Sometimes it's just me & her signing and the praise team & band singing/playing, but interest is growing and this next time (8/3) there will be 5 of us signing, including her sister!  Bethany has agreed to take on a very small part, the introduction to the song, before stepping away and taking her usual place on the drums (where, I might add, she also displays exceptional talent!).  We will be signing to "The Well" by Casting Crowns.  If you're not familiar with that song, well, look it up.  It has amazing lyrics and hopefully we will be able to do those lyrics justice and bring them even more to life, help the words reach people's hearts, with sign.  Exciting!

I always seem to have a really low point in my attitude after receiving bad scan news.  This is normal!  But thankfully, through prayer and the help (and sometimes merely the presence) of family, I eventually find my way to hopefulness or at the least, peace.

"Come to me, all who are weary and burdened, and I will give you rest."  Matthew 11:28.


P.S.  Yes, I've enlarged the font.  Guess my eyes are getting old.

Sunday, July 13, 2014

Side Effects of Chemo Outweighing Benefits?

Hello all!  It's been an eventful  two months on the cancer front.  I'm so thankful that (1) Danny is no longer working at the accounting firm, and (2) It is Summer so our family's schedule is dialed back quite a bit from its usual craziness.  More on both of these later on.

After my last "so far, so good" post, I began experiencing symptoms of peripheral neuropathy.  It started out as numbness in the hands and feet.  But then it began progressing, and quickly!  The numbness started creeping up my legs and up my arms.  Oddly, I noticed that my slip-on slippers were coming off around the house, without my knowledge.  And I was beginning to drop things if I wasn't paying close attention to the act of holding onto the object.  I reported the symptoms, and my concern, to Dr. P and the nurses.  The standard medical professional question regarding neuropathy, "Are you having difficulty buttoning your shirts?" was asked by a few different nurses.  (I, too, learned this in nursing school.  I guess that was the extent of our neuropathy evaluation lesson!)  No, no trouble there.  I could still button my clothes.  But otherwise, the seemingly quick progression of symptoms was quite disconcerting and worrisome to me.

Dr. P recommended that I take Neurontin, starting just at bedtime then gradually increasing until the dose reached three times a day.  She said that Neurontin 100mg at bedtime that Dr. Coscio had prescribed months earlier for what I now know was barely perceptible neuropathy symptoms was nowhere near a therapeutic dose.  Expectedly, that dose didn't seem to help at all back then, so I had stopped taking it.  With the new plan, the problem arose when I was unable to get past twice a day.  It made me so tired and groggy!  I simply couldn't imagine adding another dose.  Additionally, it didn't appear to be working at all on the neuropathy symptoms.  Then again I had yet to get up to the recommended therapeutic dose, so who could really say?   Since I was distressed and as she considered the side effects, Dr. P recommended that I be seen by an MDA neurologist, since they see lots of patients who have chemotherapy-induced peripheral neuropathy.  She also prescribed a different drug:  Lyrica, three times a day.  This, too, didn't seem to help.  In fact, the symptoms were much, much worse, even though I tolerated the Lyrica much better than the Neurontin.  Taking it three times a day, I was a little tired but seemed to have a clearer head than when on Neurontin.

Let me clarify what I meant by the symptoms being "much, much worse."  This is basically where I am now.  I have numbness and tingling in the hands/arms and feet/legs.  I also have weakness.  I have difficulty walking distances such as from the parking lot to the grocery store.  I'm having trouble starting my car, brushing my teeth, wiping myself(!), turning magazine pages, and holding onto things.  I can't do or open anything that requires finger strength and/or coordination -- this is probably one of those things that you can't imagine or comprehend the breadth of until it's happening to you.  I can't put on earrings or operate necklaces.  I have a lot of trouble picking up pills and also Q-tips.  My keyboarding has slowed to a crawl and my accuracy sucks since I can't feel or coordinate my fingers.  Weirdly, sometimes my middle finger gets bent up under things, such as a shopping cart handle or steering wheel, and I don't even realize it until I see it or it causes pain.  And alas, I have a LOT of difficulty (and sometimes find it impossible and require assistance) buttoning my tops and pants/shorts.  I can finally answer "yes" to the most popular question!  :)  At least I still have a sense of humor!  (sometimes)

Last weekend, I finally reached my breaking point.  I was making pancakes Saturday morning, and I was unable to flip the pancakes in a coordinated fashion.  They weren't landing where I wanted them to!  I'm normally very good at this (one of my many trivial, unimportant talents!)  Then, I couldn't hold on to my fork while eating the pancakes!  It fell from my hands once, then I held it, but it was more like it was just resting on my fingers as opposed to being held by them.  I CRIED!  I know, I know, it seems such a trivial thing to cry over.  I was scheduled to start my next cycle of Eribulin on Monday.  And at that moment, I decided that I couldn't do it.  I actually sobbed through these words to Danny:  "I couldn't flip the pancaaaaaakes!"  LOL!  But I couldn't bear the thought of allowing them to infuse more poison into my veins.  See, Eribulin is a known neurotoxic agent.  And since my serious symptoms began shortly after starting it, clearly it's the most likely cause.

I notified Dr. P via MDA Secure Messaging that I no longer wished to be on Eribulin, and I cancelled Monday's infusion.  She advised me to keep my neurology consult appointment and my appointment with her for the following Monday.  Here's where it gets complicated...

My every-3-month scans were done at the end of June (it's actually been 4 months because all was delayed due to radiation.)  They are calling it "mixed results."  The CT scan of the chest showed "significant enlargement of pleural metastases in the left hemithorax and enlargement of the left pleural effusion in keeping with progressive disease."  The CT of the abdomen & pelvis showed "no progression of hepatic disease."  The MRIs of the spine showed "widespread osseous metastases of thoracic spine, lumbar spine, and sacro iliac joints with no significant interval change detected ... no disease progression ... positive response to therapy within the lumbar spine."

Dr. P recommended that I stay on Eribulin since it appears to be working on at least some of my cancer.  Sorry but I am somewhat out of order here ... the scan results and this recommendation came before my meltdown and cancellation of my next cycle of Eribulin.  I suppose this is why it was such an emotional time for me.  My doctor is telling me that the chemo I'm on is somewhat working, yet I am making an executive decision to stop it!  But here's the thing:  I contend that the chemo is not actually working.  That's right, Dr. Kim thinks that the improvement shown in the bones is instead a result of the radiation to the spine and sacro-iliacs.  The plot thickens!!  My tumor markers continue to plummet downward, well into the "normal" range.  Dr. Kim can only speculate that this, too, is the result of large doses of radiation therapy to the back (so large, in fact, that she endured MUCH suffering from their side effects in the weeks following RT, and to this day she has a large patch of soft tissue edema on her back that regularly gets displaced into alien-like bulges.  Additionally her bowels have never been the same ... but I digress!)

Sooooo, clearly I need to have some discussion with my doctor!  Appointment coming soon.

Thanks for hanging in there with me.  I appreciate your prayers and support.  Thought I was coming out of this "rough patch," but I seem to have slipped right into another one.

Friday, April 11, 2014

So far, so good on new chemo! And other stuff...

Two Fridays ago I started on Eribulin, and SO FAR, SO GOOD!  I was a little tired over the first weekend, but since I had not yet regained all my strength from the pits of radiation, it's hard to tell if that was from the chemo or not.  Sunday and Monday I had a low-grade fever of 99.5-100.4, but that passed without further incident.  Last Friday I received my 2nd dose of Eribulin.  Almost didn't, because blood counts were really low, nearly at the threshold of being too low to get next chemo dose.  Eribulin seems to be much worse on the WBC's than Abraxane was, so I better be careful around crowds and sick people.  No more fever though.

Meanwhile, overall I am feeling MUCH, MUCH better than I have been.  Yaaaaaaaayyyyyyy!  Praise God!!!  I feel like my brain is actually functioning now and I'm able to think, for the most part, without being so confused and stressed out about everything.  I've done some more reading on steroids, in particular Decadron which I was on, and man oh man ... seriously ... I never, ever want to be on that again.  I don't like to read about side effects before I start on a new drug.  Well I do it, but just a glance, so I have an idea.  Don't want to study them or try to commit them to memory because that would predispose me to having more side effects.  At least I think it would.  Reading now and realizing that many, no, most of what I was feeling and the way I was acting was from the Decadron!  (Except for the diarrhea and tiredness, which was from the radiation to the bowel area)

One SE I read about was a craving for carbohydrates and sweets!  Yessss!  I thought it was crazy at the time, but I actually said these words to Danny:  "I really feel like eating some potatoes.  I wish we had some potatoes, but we don't."  I was really sad that I couldn't eat potatoes right then and there!  The next day, I got some potatoes and had him cook me potatoes & eggs (one of my favorite foods, but for some reason I'm no good at cooking it, so I never get to have it.)  For the next few days, I ate baked potato for lunch.  And the sweets!  I admit to having LOTS of sweets during that bleak, dark, weak, horrible time.  Ohmygosh.  I find it fascinating (and a little scary) that a drug can affect so many of your systems, including your personality and food cravings & appetite.  Makes we rethink, or at least wonder about, the whole mental illness issue.

Today was me & Danny's 22nd anniversary!  He was able to leave work early and we went out to lunch, something we haven't done in quite some time.  Steaks at Saltgrass!  Yum!  It was so good, and it was a MUCH NEEDED outing for just the two of us.  I went hatless, since I still seem to be growing some hair which started late last year (when I was still on Abraxane!)  My hair is fairly thin, and the hairline is pretty far back (me and Danny match, which is darn funny!) but it's been styling itself into a cute little mohawk and I'm just going with it. I asked Danny at lunch today, "Why do I still not have any eyebrows??"  Even though my hair is growing back slowly, I still have no eyebrows.  Missing eyebrows looks really odd!  It would make such a difference if I just had some eyebrows.  And more eyelashes!  I have very few eyelashes.  I excitedly told Danny that I keep tugging on my hair and it seems to be holding on.  I may be in that 50% of people who don't lose their hair on Eribulin.  Woohoo!

I kid you not ... a mere 3 hours later, my head was feeling a little itchy.  A little tug on my mini-mohawk yielded 5-6 hairs between my two fingers, and again, and again, and ... yes, my bubble was burst.  Looks like I'm in the OTHER 50% of Eribulin patients who DO lose their hair.  Oh well, there are worse things than being bald.

Since I am feeling better overall, we decided to boil some crawfish over the weekend.  Being able to peel my own crawfish, as previously mentioned, was awesome!  When you can't peel your own, you can't really eat to satiation.  Well this time, I peeled my own and I peeled til I was good & full of crawfish!  Heaven.  It's so good to be able to eat good food again.  After the boil comes the leftovers, and I've created some recipes that utilize the leftovers so tastily that we actually plan for it by adding more extras to the boil than we normally would, just so we can make the recipes.  Lol.  Sausage, potatoes, and corn, oh my!  We made my Spoils of the Boil Soup, and this time we had extra leftover potatoes so I also made Cajun Potato Soup (a recipe which I just invented, so very proud of myself.)  So good!  Love the spice!!  And there's still more sausage and corn in the freezer that we will use later for jambalaya, red beans, corn & crab bisque, and just corn as a side with anything else.  One thing about having your income go down, you do learn to adjust and cut corners where you can, although I've always enjoyed cooking, trying and creating new recipes, and meal-planning.  My thing is, I hate to have food go to waste.  I am a little crazy nutty about using up leftovers and trying to cook what we have in the house.  Also only buying meat that's on sale.  I meal-plan around all of that.  I'm not so good at using coupons -- I've tried, but I fail, sorry... but I do have plenty of other thrifty qualities, I swear!  Anyhoo... it is good to be back to my providing-meals-for-my-family self.  :)

The only other issue going on right now is that for a little over a week, I have what started looking like a 6-7-inch circular rash on my lower back.  It was itchy, and scratching it made it feel raw and unpleasant. Actually I didn't SEE it until after I felt the itchiness and scratched it, then looked in the mirror. Who knows how long the redness was there, but I didn't look at my back until I felt the symptoms.  I presumed it was a radiation burn, like a sunburn, from the radiation to the lower spine, so I contacted the radiation nurse about it and sent her a picture (Ever tried to take a lower back selfie?  Yea, me neither ... it's really not easy.  You probably should have someone help you.)  She said it would be unusual to have a skin reaction to this radiation.  Of.  Course.  Kim will always get the weird side effects and symptoms, right?!  Nurse also said that it was odd that I was over 2 weeks past my radiation completion date.  A skin reaction usually doesn't take that long to show up.  Of.  Course.  She recommended I use Aquaphor ointment and Cortisone cream, keeping the area moist.  Here it is, 8 days later, and it is no better.  In fact I think it's a little worse.  A deeper red and the area seems to be enlarging a bit.  Will plan to stop in at the radiation department on Wednesday, the day I see Dr. Coscio again and also start my 2nd cycle of Eribulin (blood counts willing-- just finished my "off week," so I should be good to go with that.)  A medical professional needs to see this, I suppose.

Well, thanks for reading, y'all!  And for the prayers-- they have really helped!

Thursday, March 27, 2014

Update

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!