Yondelis - Round One

Today we headed in to Dr. Thompson's office for my appointment, which was early.  I just love and appreciate Dr. Thompson so much.  He said if I wanted to wait and not do this he would back me to the hilt.  However, the pros for going ahead are the facts that I'm in good health and have the ability to weather the effects of the chemo right now is better than as the disease progresses.  And, systemic chemo is more effective on smaller tumors (usually) so capitalizing from when the tumors have shrunk from the gem/tax is a smart idea.  It was never really in doubt anyway...I felt that this was what we should do at the scans prior to my last...actually felt that we have the Lord in the mix.  So...it's on board.

Dr. Thompson's team called the hospital pharmacy to see if they had the chemo and they were informed that it was on a FedEx truck and should be delivered before noon.  So dr. Thompson recommended that we go get breakfast and then head to the hospital.  Which we did.  We got here about 11ish and by the time I got checked in, got to my room, had vitals done, port accessed, and pre boarding of anti-nausea meds and steroids, it was 3:30ish before the yondelis was actually flowing.  Looks like my 24 hour infusion will use up two days instead of one...that would be the advantage of home infusion...but hey...I played phase 10 with Rich and watched tv along with a little reading...not such a bad deal really.

So far, so good...except my blood pressure has been spiking.  Yay blood pressure meds.  My understanding is that the side effects really won't be too evident for a day or two either.  Dr. Thompson has me returning next Thursday for blood work too.

In the meantime we have enjoyed the love, support, texts, and calls of family and friends.  How did we get to be so blessed???

Labor Day

Today was quiet...really quiet.  Rich and I lazed about most of the morning just talking.  I think this is one of the most wonderful things that I have loved throughout our marriage...the pillow talk...the quiet, intimate chats about everything and nothing, that bring remembrance, laughter, the deep personal sharing of joys, fears, worries, and sacred trusts that forge and weld an impenetrable link between us...forever.  We've always had these times but with a quiet house now...these times are more frequent and somehow even more sacred...perhaps it is just that we're getting older and that is the natural course of things...who knows???  But I cherish them, whatever the reason.

Saturday evening I was asked to speak in Sacrament Meeting this coming Sunday.  My assigned topic is wide as the all outdoors - testimony.  I taught Sunday in Relief Society about the Book of Mormon.  In some ways it feels like it's the same topic.  I'm struggling to narrow the subject, since I need to speak only 15 minutes, but haven't found a way yet.  Mostly I've been reading and enjoying conference talks, but I know that's going to get me into trouble soon because my head will be swirling with ideas and I'll have no ability to pare down.  However, I knew when I was given this assignment that what I wanted most was to be able to provide a testimony to all I love.  Sadly I can't do that for anyone but myself, but I so want each one of my loved ones to want to know for themselves and pray that they'll do the necessary work to obtain their own testimony.  The old saying, "you can lead a horse to water, but you can't make them drink" is so apt.  I really would make a good satan...agency is so filled with worry and angst when you know the truth and you know that you MUST let others learn for themselves.

Thursday is coming rapidly.  I thought I was prepared...but I'm not.  I guess I was hoping that I'd just march off into the sunset and I wouldn't need to do this again...that somehow it'd all be over...but then there's reality.  I need to remember that the doxorubicin wasn't all that bad...but in my mind I guess I think that it wasn't all that bad because it didn't work, and the gem/tax was that bad because it did.  Convoluted...I know.  The degree of symptoms has nothing to do with efficacy...I know.  I'm grateful for the fasting and prayers and the priesthood blessings I've had, and amazingly, I really do feel hopeful...deep...deep...deep down inside.  But I remember the nausea, the deathly fatigue, the mouth sores, the legs that would not work, the coughing and pneumanitis, no strength or stamina, the feelings of helplessness and lack of energy.  It's reminiscent of pregnancy and delivery...I wanted the baby...but could there just be an easier way???  Obviously not.  So...Thursday will come and I will go to the oncologist and then to the hospital...could the food at least be better than it was last time???

Over Hill...Over Dell...Off To Joey's We All Go...

While we were in Alaska we received a phone call from Joey.  He had just been interviewed and called to serve in the bishopric of his Ward.  He was wondering how much longer we'd be in Alaska and if we could come to Alabama the weekend we got back...all of which we were only too thrilled to do.  Our week home was crazy busy so we left after Rich got his Nucala injection Friday.  Our goal was to meet at the Birmingham temple for the 8 p.m. session, head down to Joey's, Rich to ordain him a high priest on Saturday morning and his stake presidency member to set him apart, watch the BYU football game, go to church this morning and head home.  Hey!  We managed to do all of that!  Rich wasn't feeling very well all Friday afternoon...coughing his head off...so he elected to just head to joey's and I stayed with Joey and Carlie for the session.  The 200 miles from Tennessee to Joey's is crazy humid and hot.  I think that was much of the difficulty, but he's still hacking tonight.  A call to Dr. DiMeo is in order tomorrow morning.

Joey and the member of the stake presidency gave Rich a blessing before they ordained and set Joey apart.  I was grateful and I think it was really helpful while we were there.  

Rich set Joey apart and blessed him with strength, courage, and compassion and love, with the desire and ability to be a shining light to others.  It was beautiful really and I was struck by how right it is that he has always chosen to be an example to others and is a righteous influence for others.

The Stake Presidency member blessed him with the power and desire to study doctrine, church government and procedures, and the people he serves so that he will know how to serve them.  He blessed him to seek the spirit and follow the many promptings he will receive and that as he does that he will have many more opportunities to be trusted by the Lord to do his work and minister to His children.  And he was blessed with strength and peace and the spirit and love and his family was blessed similarly because of his service.  

 After the blessing we all headed to a Chinese buffet for some lunch, watched the BYU game (they won against Portland St.), Joey headed to a special meeting in Birmingham with the rest of the bishopric for some training with two members of the seventy, Carlie and I looked at some genealogy and Rich and I ran a couple of errands.  Today we attended sacrament meeting an then headed home.  It was a really long trip.

I was struck by how grateful I am for the church and its restoration, and for the gospel and its covenants.  It is not to say that everything's always goes smoothly or that there aren't challenges...but knowing that the Lord is in charge really is everything.

"All good things must come to an end..."

The title of this post is a version of a quote from Chaucer in A.D. 1374.  Sadly that is the case of my last few days.  Sunday evening we caught our flight to Seattle, leaving our little Hamblin family behind.  As Cherstin helped us with our bags into the terminal, I was overwhelmed with how raw my emotions were.  Sadness enveloped me for so many reasons...seven were in their car and one was giving me a hug, with tears in her eyes.  How did we ever get so blessed?????  And, totally committed to this being an honest blog, I wanted to freeze time as I silently wondered if this would be the last time I would ever see them in this life.  Such morbid thoughts you might say....but realistic too....life is far more fragile than I think we ever realize, and, too often we get caught in the human experience, forgetting that we really are eternal beings having a mortal experience and that mortality is just a stage of our development.

Sadly, while we were in Alaska, one of Dan's co-workers was killed while on leave, driving the Al-Can with his wife and their dog, heading to the lower 48.  Both his wife and dog were ok (as OK as you can be in this type of situation), but it wasn't the case for Coyle.  Dan knew this guy pretty well, and it seems that the entire group did as well.  Dan first learned of the accident from the Bishop as Coyle was a member.  Dan alerted his supervisor and commander.  No one is really aware of how the bishop came to know since Coyle and his wife were not active.  Perhaps it was one of their family that contacted the bishop since they are active.  But it was sad to me that his ward family knew little of him and certainly not enough to truly mourn his passing.  The guys he worked with had a memorial service and a memorial run in his honor, and I think he will truly be missed.  His impact in the lives of others really was tremendous.  One of the funny things that Dan shared with us is that he and his wife had reared their dog from a pup to be an attack dog. I don't know the reason...perhaps work related...but Coyle had taught the dog to respond to all of his commands in Farsi...but his wife doesn't speak Farsi!  The dog will surely miss his master, and his wife will surely miss him too...but I can only imagine her frustration in trying to work with a dog only knowing another language...but perhaps he'll be bi-lingual soon.  You really can teach an old dog new tricks😉.

It is always surprising to realize how fast time really does fly.  It seems that we were there for just a few days, but in reality it was over three weeks!  It will be nice for their little family to get back to their own routines though, as having extra people always throws things off a little bit.

We got into Anchorage at like 1 a.m. on Sunday morning, the 30th of July.  By the time we got baggage, drove to their home and got settled into our room it was much closer to 3 than 1...or 7 am our time.  I don't know how Cherstin and Dan were able to keep it a secret, but the kids were sure surprised to see us in the morning!  I think Abby had a sneaking suspicion...but she didn't blab if she did!  We went to church and I had the fun opportunity to teach primary music for two weeks while their chorister was away.  Their primary doesn't need much teaching though.  Wow!  They really can sing and they know the words, dynamics, and were easy to engage.  That was especially fun for me.

We got back home, had supper and movie night, and then redressed everyone and got them back in the car for Ellie's baptism.  I'm always amazed at the supportiveness of their ward.  When Emmett was baptized the R.S. Room was filled to capacity and I thought that was pretty unusual.  But it was the same for Ellie's.  Their home teacher, bishop and counsellors, EQ president, YM president, families, primary teachers, classmates...seemed like nearly the entire Ward showed up.  And, two weeks later the bishop and his wife had a birthday party for their disabled son (he has Down's and is autistic and functions at  about a one or two year old level) who is turning 20...again...it seemed like the entire Ward showed up to celebrate Caleb's birthday!  It is amazing, absolutely amazing.  This past Sunday Heidi's nursery teacher spoke in Sacrament Meeting and Heidi ADORES him.  When his name was announced as a speaker, Heidi nearly jumped out of her Mom's lap to get to him.  By the end of Sacrament Meeting, Cherstin finally let her go and she ran to "Brover Hatcher" and he swooped down and picked her up and she was so delighted...it was precious to see...such love!  Truly a blessing.

Anyway, I digress.  Ellie was given latitude to make her baptism her own, and in true Ellie fashion, she did just that!  She had originally wanted the congregation to sing "America, the Beautiful" and "The Star Spangled Banner" 😂.  Cherstin was able to suggest "baptism" songs and Ellie eventually chose "When I Am Baptized" and "A Child's Prayer" but she was pretty insistent that her family sing a song that she loves - "To Be A Pioneer" following the intermission.  I had to chuckle.  It's so Ellie.  That's another thing - their Ward sings!  Not half-heartily but full throated praises - men, women, and children!  You can really feel the spirit!  Ellie also wanted Rich to baptize her.  Rich was reluctant since he truly believes that her Father should have the privilege, or perhaps a brother.  But when she insisted and Dan seemed perfectly content, especially since he would be confirming her, Rich felt really honored and grateful for the opportunity.  We haven't made all of our grandchildren's blessings (sorry Glory, Scarlett, Ivy, and Noah 😔) but we've been able to attend all of their baptisms so far.  What a privilege.  Again, the reality hit that made me wonder if Rich and I will be here over the next decade to participate...I sure hope so!    I realize it isn't all about me and Rich...but I love my grandchildren so much and love their tenderness, teachableness, their goodness, and am so proud as they make this critical choice to serve the Lord and follow Him.  It was true for each of them at this stage in each of their lives - Joseph, Rebekah, Rachel, Gideon, Mary, Glory, Ben, Scarlett, Sam, Ruth, Emily, Abby, Levi, Orion, Moroni, Emmett, Mordecai, William, and Ellie.  And it is true of Adam and Reah as they approach their special date.  Wow! That's 21 of our soon to be 36!  How pleased we are of their parents who have taught and taught and taught...in word and even more by example.  They truly are blessed to have their parents and to have been brought into mortality in their homes.  As I reflected on the covenants, the promises, the duties, and the blessings of this choice I realized more and more how inspired our Heavenly Father is in these covenants, the teachings and principles, and how ready these wee ones are to make these choices before the world encroaches into their young lives...what a magnificent protection for them.  And the world just spirals faster and faster....

It rained quite a few days while we were there.  That certainly hadn't been the case when I had been there the other two times.  We didn't really see the wildlife like I experienced the other times either, but due to the cold, rain, and our "mobility" issues, perhaps we weren't in a position to see as much.  However... The other wild ones were evident and in full force...we watched Emmett at a swim meet and quickly realized the sacrifice that his parents and the rest of the family make to support him.  But it is also evident that he sacrifices a lot too...play with neighborhood friends is often cut short due to swim practice, he uses a lot of energy, and there are plenty of sore muscles...but he is awesome to watch and whatever he decides to do with this talent may be incidental to the training, work, effort, team experiences, defeat, sportsmanship, learning to take counsel, and the self discipline he is learning.  Hyrum seems to be quieter by nature, but can certainly hold his own, if he needs to, and can instigate when he chooses.  He loves to create with blocks, other manipulatives, and plays a mean computer game...although I can still beat him in Dr. Mario.😜. Enzo is the Minion Kevin.  Abby thinks that the part was created using Enzo as the template😉.  He's made such progress that he is hardly recognizable from two years ago.  He really is a sweet and tender little guy, but he's also very strong willed and determined.  You can see the panic on his face when he gets confused or misses vital info, but you can actually talk to him now and he seems to understand what you're trying to relay.  There were hardly any melt downs the entire time we were there and that is just amazing.  He LOVES pickles btw!

Abby is growing and rapidly becoming a young woman.  She is easy to love.  Fairly quiet by nature, she still has a streak of determination when she's feeling abused (usually by Emmett, but sometimes by Ellie).  She takes quite a bit from them (just really being themselves) but when she's had enough she is learning how to put her foot down firmly enough that they'll respond but to not lose her kindness and temper - not an easy task really.  Sparks fly sometimes as she trying to learn this art, and truthfully, Emmett and Ellie are such strong and forceful personalities, that unless something is important to her, she just gives in...and they really don't know how to handle her standing up to them sometimes...maybe it just catches them off guard or something...but they are much more aggressive by nature and so they're not easily placated by reason😜. As a little extra acknowledgement that she's growing up, Dan and Cherstin would allow her to stay up an hour or so later to watch a tv program with us, and we would often have a snack, and she quickly was dubbed "the snackaderm" by Rich as she became the legs running up and down the stairs for the various snacks.  She got the humor and I think she enjoyed her role and the privilege.

Ellie is a hot mess!  She is in that awkward stage when she wants to be a little kid when it suits her but wants to be an older kid when that looks more fun.  She really has a tender heart.  She made me a painted rock (very beautiful, really) when she went to activity days, and she is always "creating".  Cherstin and Dan have tried to "contain" it somewhat  and still allow her the opportunity...but between the energy, the mess, and lack of restraint...she's like a tiny whirlwind!  She has friends in the neighborhood now and I think that's a real blessing for her. And talk???  My goodness!  I wonder if she inherited her chatter from my mom, especially when her teacher would note that she could be a great student if she weren't always TALKING!  Sometimes I wondered if she just couldn't stand quiet...needed to fill in the quiet spaces.

Heidi is a book end to Abby.  Easy to love, pretty quiet by nature, not really defiant or agressive...although she's not adverse to putting Enzo in his place if she thinks he's overstepped his bounds.  Doesn't really require much discipline - in fact several times she put her own nose on the wall - because she thought she needed it??? 😂

How can I distill three weeks into a few lines?  I really need to get better at writing daily.  We really, really, really enjoyed ourselves and I was so tickled to be able to share my time with Rich there.

A cool thing happened on our way home...the 99 year wait for a coast to coast solar eclipse happened on the day we flew home.  And...our path was the same path as the eclipse.  We were in the effects of it for about 20 minutes I think...it started while we were just south of St. Louis and ended just a little while before arriving in Nashville.  The pilot had permission to bank just so we could catch the effect.  He said there was lots of air traffic trying to get a pic too.  Joey and his family tracked to the Tennessee boarder in order to have a totality view.  Desi and Felicia had partial.  Wanda and Phil - not so much - but I think Hannah was in Montana and had partial too.  Cherstin and Dan were overcast and had a pretty good view on tv😜.

The last few weeks I have been feeling more and more uncomfortable so when we visited with Dr. Keedy yesterday I wasn't in the least surprised to learn that the chemo free months have now passed. There was a cm growth in one of the liver tumors, growing from 4.5 to 5.5 cm.  and there was nearly a cm growth in the large mesentery tumor.  The mesentery tumor may have been small tumors that have grown together as they are somewhat a blobby mass instead of a circle like the liver mets.  The liver met growth would have been enough to warrant chemo since things are no longer stable, but with the mesentery growth I knew we had come to the end of the road.  No chemo since the 16th of January has been such a blessing.  I have enjoyed feeling good, gaining strength and stamina, and feeling more like myself.  I dread chemo but I'm hoping that this will be one with limited side effects.  Dr. Keedy had prioritized the probable choices based upon quite a few factors...we could go back to doxorubicin and add Olaratumab that was fda approved in November but my tumors grew on the doxorubicin and there is a lifetime limit as well.  It isn't known whether adding the olara would really help and so we just pushed it to the back of the line.  The gemcitebene and taxotere were fantastic and gave me great results with tumors actually shrinking and stability for all these months but my reaction to them was severe and Dr. Keedy is VERY reluctant to try that again, unless there are no other options.  We had talked about votrient as the next option but the growth in the mesentery tumor has her somewhat concerned as the tumors are very deep in the upper abdomen and are where there are lots of blood vessels, veins, arteries, and vital organs all converging and votrient has a possibly higher risk for blood clots, so she is suggesting yondelis.  Votrient is a pill and I would have enjoyed not being tethered here with all the things happening in the family. But, I actually felt like yondelis should have been the choice when we were talking about it last visit so I feel that the Spirit is directing things here more than He's given credit.  It is a 24 hr infusion every three weeks...so my out of town activities will have to be worked around that....at least for the next 6 weeks when they will rescan to determine the effectiveness.  We will be leaving here Friday to meet Joey and Carlie at the Birmingham temple and then head down to Montgomery for Rich to be able to ordain Joey as a high priest and then a member of the stake presidency will set him apart as a member of their bishopric.  It will be good to see them all again and we'll even get to watch the BYU football game.

I'll meet with Dr. Thompson next Thursday and he'll be the one administering the yondelis and directing my care.  It is possible I may need to have another echocardiogram as a new baseline since yondelis has a possibility of causing muscle damage but Dr. Thompson may feel that the one they did while I was in the hospital in January and February is sufficient.  My best guess is that chemo will start somewhere from Thursday to the following Monday. 

Rich seemed to manage the flight and trip pretty well.  I think he had thought of every possible thing that could happen and had a contingency plan.  The VA had oxygen there for him, he had physical therapy set up, and plenty of meds.  Unfortunately the nerve damage in his leg did give him some grief and so did his back...but that probably would have been the case at home too.  All in all...I'm ready to do this again!💜

An Early Christmas Gift

Today I had an early appointment with Dr. Thompson, my oncologist.  I had ct scans with contrast last Thursday and Dr. Thompson gave me my results this morning.  The scans were terrific!  Most of my liver mets actually shrunk a little bit...mostly millimeters, but they shrunk!  (Except for one which stayed the same) And the largest messenteric mass actually shrunk nearly 3 full centimeters!  Dr. Keedy had told us that that one would be the least likely to shrink as the mass is so large and the interior shows some necrosis so it is growing on the perimeters - and the fact that it shrunk at all is just thrilling news. The other large messenteric mass only shrunk by 1/2 a centimeter...but it shrunk!  I'm just elated and feeling so hopeful.

Before I left for the appointment I was feeling a little nauseous and should have eaten something.  However, with such an early appointment, and because I think I was trying to protect myself a little, I thought I'd be back home within an hour or so.  The plan that was in place was that if there was stability and/or shrinkage then we would continue on this protocol.  However, if there was growth, I would see Dr. Keedy on Thursday and we would map out a new plan.  I think eating something would have helped because with the good news from the scans, I started my third round of gem/tax after seeing Dr. Thompson.  Even with the anti nausea meds that they load before the chemo, I have still struggled with nausea all day.  Compazine hasn't helped and neither has eating.  I am grateful I have some phenergan tonight.  I think it'll break the cycle with some sleep.

With some reflection, I realize that my response this morning should have been like the little girl that took her umbrella to the meeting that closed the fast for rain in St. George, Utah when President Snow had promise the windows of heaven opening if the people paid their tithes.  Instead, I know that while my faith is growing, it still is weaker than I'd like.  I love the story from the Savior's life when the father intervenes on the behalf of his son and says, "help thou my unbelief".  Prior to that he had said he believed.  I believe...but it is obvious that my unbelief is also present.  Perhaps it is fear.  I have increasing understanding of Peter as he walked on water.  It is easy to believe, until fear and doubt creep in.  I have no doubt that I'm in the Lord's hands and that whatever He chooses or directs is right.    But perhaps one of my greatest worries is that what I desire is not the Lord's plan and that I need to put my desires in alignment with His.

However, tonight I rejoice in this wonderful Christmas miracle.  I know that there have been many prayers and fasts in my behalf and I am so grateful.  I have felt the sustaining power of the spirit and know that I'm extraordinarily blessed.  How grateful I am to live in this country, at this time, and when knowledge and science and researchers are  being enlightened and learning to understand what drives so many diseases...and mine is one of them.  

Second Round of Gem/Tax...Same as the First

Met with Dr. Thompson this morning, after labs and prior to chemo.  This is day one of the duo Gemzar and taxotere.  On day one the infusion is just the steroids, anti-nausea meds, and Gemzar.  On day 8, next Monday, it will be the whole enchilada and neulasta as well.  

My numbers (blood counts) have definitely been affected by the chemo but not so bad that the infusion couldn't go forward.  That, in and of itself, is a good sign that my immune system is responding.  Dr. Thompson asked me how I would compare the Gem/Tax with the doxorubicin.  Truth be told, the doxorubicin was easier, I think.  There was breakthrough nausea, diarrhea, mouth sores, and tiredness, but all in all, they weren't too bad.  But, I only had two rounds and I understand that the effects are also cumulative...so it may be that I just didn't have enough to have the full effects of red dragon.

But, it is conceivable that I may be on this combo for many cycles.  I know a few people that have had 20+ cycles.  If I even just get stability, my guess is that we'll ride the wave for as long and as far as it will take us.  That being said, I think I probably ought to note what I have experienced so that I don't forget and I'll be able to remember the effect accurately so that if it does get worse, I'll have something to compare with.

The first day of Gemzar I had no real side effects.  I slept...just because everyone recommended it...and I must have been tired because sleep came easily and I slept well that night as well.  Bone tired exhaustion did occur from time to time throughout the 21 day cycle.  It comes with little warning, but I'm extremely fortunate that I can just snooze when it hits.

Day 8 was they very worst of the cycle for me.  I slept the afternoon away but as evening came my temp spiked at 103.4.  It wasn't until early the next morning that my fever broke and I finally felt better.  We ran through the after hours protocols but there was a break down somewhere.  The afternoon of day 9 we had an appointment with Dr. Keedy and she suspected it was a reaction to the meds - she thought the Gemzar - instead of platelets crashing - since I was experiencing no more symptoms.  I was a little anxious today about the Gemzar because of that experience, but so far, so good.  Flu-like symptoms can be expected for 2-5 days after each infusion.  And, I haven't had that either.

The second week I experienced constipation.  Miralax took care of that.  In all honesty, I'd rather have the diarrhea but the constipation wasn't a huge deal either.

By the last of the second week/third week, I experienced mouth problems.  Not sores like the doxorubicin but it was as if I had drunk an entire mug of boiling water...like my mouth had been burned.  Food didn't taste quite right, but I could brush and floss with no worries, in comparison to the doxorubicin, but I did find food tinny and needing salt.

Perhaps the most annoying thing was that by the end of the second week I started to experience nose bleeds.  Probably due to low blood counts.  Dr. Thompson told me today that the neulasta recommended by Dr. Keedy had been approved by my insurance! Yes!  Although that brings its own kinds of issues, but I learned how to deal with them from the doxorubicin.

Breakthrough nausea actually happens from time to time but I honestly can't tell you whether it is the chemo or the tumors...perhaps it's both.  But, compazine or phenergan takes care of it well...just adds to the tiredness though.

Finally, there are some weird events that happen sometime, without warning.  I have no words to describe them.  I have described them as kind of "out of body" events.  Trying to analyze them hasn't really helped either.  Sometimes it's like you just get kind of dizzy...but it isn't really dizziness...kind of like your body just isn't connected and you wonder if your legs will move or hold you...your head isn't really spinning but you don't don't feel sure at the moment.  Just hard to describe.  I'm wondering if it's related to hydration as it more often seems to come upon standing or walking...but not always.  It's something I'm planning on working on this cycle because IF hydration is a factor, that's something I can do something about.

And, I really thought that the lumigan that I use for my glaucoma would protect my eyelashes.  The doxorubicin didn't really take them all out - thinned them some but they were still there.  That can't be said after a cycle of gem/tax...I have three lashes on my right eyelid, two on my left and one long one on my left lower.  I played around with false eyelashes but some warn that the skin is so fragile on chemo that the adhesive may create wounds that risk infection.  I see my ophthalmologist next month so by then I'll know if I'm going to be on the regimen for a while, if this will be something that will be dealing with, and I can ask his opinion.

My biggest complaint is really feeling like I'm a slacker or a flake.  It's just that I can't seem to feel certain that at any given moment I'll be in control.  I think that is part of the process of having to learn to thrive with cancer.  Today I came home and appliquéd three leaves on the quilt I'm working on and then came into the bedroom and took a 2 1/2 hr. nap!  What a joke!  I'm having trouble deciding if I need the rest or if I'm just slacking.  Rich keeps telling me to just roll with it...but I'm worried that could develop into quite a negative character trait.  I did fix lunch and dinner! Lol!  I've decided this round I'm going to set little daily goals and see how that works.  Tomorrow I'm going to my water aerobics class and the appliqué on my quilt strip and setting the appliqué for the next strip, and go practice the organ.  Wonder if I can manage that.  

On the plus side - we did have the chance to head to Alabama to spend thanksgiving with Joey and Carlie, and the kids.  It was such a pleasure and we really had a great time.  The kids have grown so fast.  It is hard to believe that Joey and Carlie are where Rich and I were just such a short time ago - at least to us! Lol!  Time flies so quickly and in the middle of it, there is always the worry and stress of trying to always know what is the best way to respond to whatever is happening.  In the end, it's all about love and teaching in the Lord's way.  On Saturday we had to opportunity to attend a temple session with Joey and Carlie too.  What a blessing.  We heard from all the kids and our extended families too.  That's what it's all about!

Sleep, Sleep, Oh Where Art Thou?

This morning I woke at about 3 am and just haven't been able to get back to "sweet dreams".  It is possible that my meds may be playing a part, but I'm hesitant to ascribe it to that entirely as there have been difficulties once in a while over the last little while.  Partly I think one of the problems may be "night sweats" - just dripping wet - wet me, wet sheets, wet pillow, wet clothes...wringing wet.  I used to believe it was all related to menopause.  However, of late, I've thought it was the cancer.  But the truth is, I just don't know.  Yesterday I brought the subject up with Dr. Keedy and she didn't rule it out but said wasn't typical for sarcoma.  But she did say it it is possible that some of the chemos may be dropping wbc's and rbc's enough that I might be experiencing some fevers at night, since fevers often spike at night.  That could mean that what I'm ascribing as night sweats are actually the fevers breaking.  Who knows?  Truly not me!  Needless to say, sleep wouldn't return and after two hours of trying I finally decided I might as well get up and do something worthwhile.

I have truly felt that I have needed to write, that it has been my own personal answer to prayer.  But, I haven't been as faithful in that effort for several weeks.  I have plenty of excuses.  Sometimes I just marvel that I can rationalize anything!  And there have been days when I don't know if it's even an excuse...but the effect is the same...regardless.  The point of this paragraph is to acknowledge that I'm way behind in blogging any of many, many, too many (but I'm not complaining :) blessings.  I may not get to all of them even now...that really is the problem of not keeping up!

I mentioned yesterday that we had travelled to Vanderbilt to see Dr. Keedy.  This was my second visit with her and it was a much better, less frustrating visit than before.  The visit with her the first time was great...but the admitting process was VERY cumbersome, long, and confusing.  Yesterday it was smooth and seamless.  Awesome!

I learned that she would have recommended the change in chemo therapies, just as Dr. Thompson did. However, the fact that I have started gem/tax makes it impossible for me to qualify for a new clinical trial of gem/tax with the newly approved Olaratumab.  Had I called/contacted her when the scans showed that I had continued growth on the doxorubicin, I could have been put on votrient until potentially approved for the clinical trial.  However, she said she'd probably still would have recommended just heading straight to the gem/tax.  There would have not been guaranteed admittance to the trial.  There would only be a 50/50 chance even in the trial that I would have been on the Olaratumab arm and if the trial actually shows it works synergistically with gem/tax like is seems to with doxorubicin then they can add it if it's fast tracked by the fda like it has been with doxorubicin.  All of this possibility is probably 18-24 months away at best.  But one never knows. The good thing with gem/tax is that there is no lifetime limit like the doxorubicin.  She's had a patient on and off it for nearly five years and I know of others from my sarcoma support groups who've actually been on it longer. When my scans showed the doxorubicin wasn't working, Dr. Keedy was at an international sarcoma conference in Portugal...whether I could have even made contact with her...who knows.  And I am still learning to navigate my way through the working relationships with a regular local oncologist (Dr. Thompson) and her.  I think that was what I liked so much yesterday, I felt like all of the uncertainty was wiped away.  For instance, there is much discussion on the sarcoma support boards about needing to see sarcoma surgeons when facing surgical options.  When I had the ER episode 8-9 weeks ago, part of what made me so concerned was who to go to...local onc, her, local hospital ER or drive to Vanderbilt.  But she was able to clarify that sarcoma surgeons are really important if the purpose of the surgery is to take out a mass entirely with clear wide margins that they specialize in. However, I'm NOT in that position, and probably never will be due to the quantity and size of the masses, and their locations.  I will more likely face debulking and/or interventional procedures as/if organs become involved, i.e. Colon, stomach, jejunum, arteries, liver, lungs, kidneys, gall bladder, pancreas, etc.  In those cases, a really good surgeon who specializes in the trouble I'm facing at the time, can manage and care for me where I am the best, instead of me trying or needing to get to Vanderbilt and a sarcoma specialist.  If I were in the Nashville area, it would be a no-brainier to go there...but three hours away...when I have local hospitals that are great...wisdom dictates my care here.  And it really relieved my anxiety.  

One of the great things she said they discussed at the conference in Portugal was how hopeful many of the Sarcs are with yondelis.  It's not so much about the shrinkage...that seems to be a very small percentage with any of the chemos.  But, there seems to be encouraging results at gaining greater stability for longer periods of time before the tumors adapt on yondelis.  There are a number of members on the LMS support boards who are currently on it, but it doesn't seem like a cakewalk either.  Anyone on Medicare is denied coverage currently because it is a 24 hour infusion and the protocol is to go to a infusion center and get "hooked" up and then return home for the 24 hours, then return to be "unhooked".  For some reason, Medicare will not cover that, unless they are hospitalized.  And now, with the upheaval in obamacare, many on the boards are anxious...fears of pre-existing conditions, Medicare, government options, and just uncertainty abound.  I am sympathetic.  My costs are out of sight...just the scans and blood work, let alone meds, chemos, and dr. visits...and so far my insurance has been really supportive.  Changes really are necessary if health costs aren't contained and laws aren't changed.  Hopefully these issues will end up being resolved for anyone facing serious medical challenges...regardless of type.  The last thing anyone with serious health issues needs to face are the added stresses of financial/insurance costs.  I don't have an answer.  But my heart breaks for so many.  And, I don't really believe it's the government's role either.  Just need the millennium to come soon!🤗

So, Monday was day 8 of my first round of Gem/Tax.  A round is 21 days.  On day one you get the gemcitebene with the usual steroid, and anti-nausea meds.  The next week you get more gemcitebene, more steroids, more anti-nausea meds, Tylenol, and taxotere.  Dr. Keedy would recommend the addition of neulasta.  The first day and week I felt tired and some breakthrough nausea.  But nothing too bad.  Monday was another story.  The infusion went well and Rich brought me home and tucked me into bed and said, "stay there!"  The infusion nurse had told us it was a good day to just rest.  I slept most of the day and wakened in the late afternoon, in time to attend dinner with a group of friends for our monthly home evening group.  I was freezing...teeth chattering, bone chilling, hand shaking freezing and no matter how many coats I had on I couldn't control the shakes.  I lasted about an hour and a half before I had to come home.  I felt so bad.  Usually we spend several (3-4) hours together and Rich really was enjoying himself, but I just couldn't manage any longer...and because we left, so did everyone else.  I immediately climbed into bed, doing a sort of "princess and the pea" reversal - four or five blanket and I was still shaking.  Rich jacked up the heat to no avail.  After about an hour, it occurred to me that I might have a temp.  I've been warned with every cycle of any kind of chemo that if I develop a temp of 100.5 I need to call the dr. or after hours doc immediately.  I took my temp and it was 103.3...well above the call number.  After several rechecks Rich called the after hours number and was put on hold for nearly an hour.  Neither he nor I wanted to head to the ER as if it was my blood counts and immune system crashing, being exposed to any kind of illness didn't seem like a good idea.  Finally, we got through and the woman that answered said she'd call the on-call onc and to wait for his call.  We waited until 3 am.  Finally I drifted off to sleep and sometime by morning my fever broke and I felt human.  Rich was furious and I don't really blame him.  However, I'm more a pacifist I guess.  I did talk to Dr. Keedy and she believed it was a reaction to the taxotere...although it could have been the second infusion to the gemcitebene.  Or, my blood numbers were affected...and that will continue as that is the natural course of this chemo...that's why she would recommend neulasta.  Seriously, we were well aware that flu like symptoms were possible for up to five days after infusion...guess I just didn't think it could happen to me! Seriously!  Do I really think I'm immune?  😜. Obviously!!!

Anyway - I'll contact Dr. Thompson's office this morning about the neulasta...if they don't administer it this morning it'll likely have to wait until the next cycle.  What we don't know, and neither does she, is whether or not Tricare covers it for this protocol, unless medically necessary.  That may be the reason.  We'll see.  But, as is typical, this is the week my counts should dive and the next week my immune system should start to rebuild.  Rich is REALLY protective.  I had thought after our appointment we'd head to the temple and catch a session.  But after Monday night he nixed that with no debate.  He feels strongly that I need to stay away from potential threat at this time...so I'll comply.  Next week, once my immune system has had a chance to jump start, I need to get the flu shot.  No guarantees with it...but I need to do what I can to help myself!  

And, I would add more info from the last few weeks, but, my iPad is dying.  So...I'll close for now with my heart-felt gratitude for all the good wishes and prayers of so many of my friends and family.  And for the knowledge I have that my Heavenly Father hears and answers prayers!