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!

Blessings! Blessings! Blessings!

When we lived in El Centro, CA a good friend, Sharreen Touchet, used to have a saying that we have adopted whenever something happens that is unexpected and/or good...she would say, "blessings! Blessings! Blessings!"

Today I have been abundantly blessed and I am so grateful for the tender mercies from the Lord and His servants who have poured out their "blessings!" upon me.  Truth be told, the blessings have been abundant all week long, but I was so focused inward and trying my best to just endure that I have not even acknowledged or expressed my gratitude or even my awareness that these blessing have been poured out.  I wish that hadn't been my reaction...but it is the reality.

Friends have texted me faithfully over this past week to ascertain how I was doing, offering food, movies, or just to come sit with me.  Rich has not had a meal...instead he has provided the strangest offerings that would more indicate pregnancy than chemo...except we don't really know much about the strangeness of chemo food...except that it seems a lot like pregnancy cravings!  Baked potato, French fries, over easy egg on toast, bacon egg and cheese biscuit...just like Australia! And Chick-Fil-A diet lemonade....ohhhhh!  Salvation!  Poor Rich!  I know he will be grateful when another week has passed and the nausea has abated some!

I am so grateful for Serina's extra attention in my acupuncture appointment.  Truly she is a kind and gentle soul who recognized the yuck of my day!

I received a special note from Mary Turner that was full of love and kindness.  I haven't even shared with her my diagnosis, yet I know she knows...and yet she loves me anyway.

I received a sweet and tender email from Kathryn this week giving me encouragement and support in this fight.  Her words were just what I needed to hear at the moment I needed to hear them.

My children (including my children who are loved by my children - and Rich and I) have kept in contact...helping me feel connected and a part of their lives, yet seeming to know that I was not terribly able to do much more than love them and their efforts.

Today I received a care package from Karen and David with four fluffy/fuzzy hats with a precious note telling me of their love and support at this time.

And my brothers, Mike and Brad, took time out of their hectic schedules to attend a sarcoma conference at the Huntsman Cancer Center today.  They queried, listened, and gleaned as much information and made contacts with other LMS patients, Drs, pathologists, genomics specialists, surgeons, and radiologists to understand what I'm experiencing, learn what is being done in the field, and to give me hope and support!

I'm just so overwhelmed!  I feel such love and know that I don't deserve any of it!  But I'm so grateful!  I truly feel like the loving arms of the Savior have been wrapped around me.  I feel the prayers and fasting that is being done on my behalf.  And I know that Angels truly have attended me all week long...in a week that seemed to last forever!  Thank you!

Nausea and Acupuncture

Yesterday was non-stop nausea.  My guess is that the three day anti-nausea meds were wearing off and I was just experiencing the effects of the chemo.  However, there seemed to be no remedy.  I lived on phenergan and zofran, dozing off and on throughout the day and evening...to no avail.  Basically it was a wasted day...I accomplished zilch!

I reasoned that today would be a bit better.  It was.  Barely.   Rich had an appointment with the VA in Johnson City so we headed out about 9:15.  After his appointment we left directly for Morristown for our acupuncture appointment.  To my surprise I was absolutely thrilled to find that for the duration of my appointment I had no nausea!  I know that acupuncture is used often to treat the symptoms of chemo but I'm firmly a believer after today.  However, it didn't last as long as I'd have liked.  We stopped at Costco to fill up and pick up a few things.   Finally were home and I'm snuggled in my bedroom sanctuary...and I'm chillin' with my hubby.

This morning Rich had an appointment with Dr. DiMeo.  All in all it was really quite a good appointment.  He'd had an appointment even earlier for his monthly Xolair injection and to determine what the status of his prescribed Nucala injection.  Of course this appointment and the challenge of getting the Nucala injection started took some time.  Dr. DiMeo is meeting with a Nucala rep tomorrow so that will probably be resolved in pretty quick order.  And, the cooler weather is seeming to agree with Rich's lungs!  We have a follow up appointment in two months.

Rich also had his therapy appointment this afternoon.  I tagged along and waited/slept so we could stop at Sams.  By that point nausea was breaking thru and I just wanted to come home.  We picked up a few things but I've been very grateful for my bed...just slept this evening.

Second day post second infusion

Rich had a really long day today.  He had a training appontment, pulmonary rehab, got the tires on the balanced and then found his way home, only to find that I had a hankering for cheese bread so we wandered out to Kroger's in search of bread and also found sweet tango apples still on sale and cherry chocolate Greek goddess yogurt...sounds yummy!

I'm finding that my appetite struggles the first week or two after each infusion and my my taste buds are very eclectic.  Both Rich and I need increased protein and we both need probiotics so I'm hoping the chocolate cherry yogurt just hits the spot!

Today I taught my institute class. I enjoy the group of ladies immensely and I felt it was a low key enough endeavor that things would be ok.  By the time I got home I really was tired and came upstairs, crawled into bed and took a nap.  Later I had calls from Cherstin and Joey and Phil...family is the best, huh?

Second Infusion and Dad's Example in Huetschenhausen

Today was my appointment with Dr. Thompson preceding my second infusion.  My labs went well enough that it was a go.  He also seemed hopeful that since the first infusion, I haven't had a return of the pain that sent me to the ER.  I'm hopeful too, but a little reluctant as it seems the collective wisdom from my LMS support group that our tumors are so deep that seldom does what we feel seem to accurately reflect the actual results of the chemo.  At any rate, before my next chemo in three weeks I will have another ct scan with contrast to see what has been going on.  I remember very well that Dr. Keedy' expectations were that there might be as high as a 60% chance of tumor stability (no growth) which I'm hoping and praying my response is at least that good.  There is a 20% chance that there may be some shrinkage, especially in some of the smaller tumors.  Again, I'd really like to be in that 20%.  There is a lady in the LMS group who actually had a 50% reduction in all of her tumors after three rounds.  But there are many more who've had growth while on it.  Faith and prayer. Faith and prayer.

A good thing that may happen over the next few weeks is a possibility that a drug (olaramutab), when combined with doxorubicin increased effectiveness by 60% in recent trials, will be granted breakthrough  status from the FDA in short order...rumors suggest sometime in October.  My next infusion is scheduled for Halloween.  I'd LOVE to have that happen and be able to combine the olaramutab with my Dox!  Faith, hope, and prayers!  Faith, hope, and prayers!  

All in all, I'm fine.  I'm experiencing a little more nausea than last time...but I've got meds for that!  Mostly I'm tired.  I know this is to be expected too.  I really think a good nights sleep will help...and phenergan will let the drowsy begin😉.  Tonight I feel grateful for Drs., nurses, pathologists, pharmacists, researchers, and especially all of the love, support, faith, and prayers of my family and friends and for my Heavenly Father, the Savior, and the Holy Ghost whose light and knowledge is flooding the earth, and grants unto me many, many good days of peace and comfort, with the knowledge that the Savior knows me personally and has already experienced all that I have and will experience and done...and through His atonement I can be completely healed - emotionally, spiritually, mentally, and even physically.  And I don't even understand how He could do that let alone love me enough to do it!  

When I was a teenager (I may have shared this somewhere, sometime but don't remember) we were living in Huetschenhausen.  It was usually our custom to have dinner after Dad retuned from work so that we could have a meal together.  

One particular night (it was like 9 pm) we had just finished dinner and Dad made assignments for evening chores.  He asked me to clear the table and wash the dishes.  I REALLY didn't want to do them but I said ok.  But, because I didn't want to do them I went to the bathroom, played the piano, etc. - slow, slow-leaking you might say.  

After about 30-45 minutes I heard Dad in the kitchen, running water, scraping plates, putting food away, etc.  He wasn't doing it in an angry way...he seemed genuinely sad.  I tried to get him out of the kitchen with my attempts of protests and apology and jumping right into the task.  He responded by telling me it was ok and to just go finish my piano practice.  I felt so repentant and tried to make amends.  After a little while (with not much left to complete) Dad finally left the kitchen and I finished the job.  

I was frustrated beyond belief and went to talk to my Mom.  In her wisdom, she listened.  But once I had finished she said something to the effect of, "Karen, do you not understand your father yet?  He truly believes, like our Father in Heaven and the Savior, that if you love him, you will do as he asks."  For the first time I really understood.  Since that experience, my obedience is always about the love.  I love my Heavenly Father, the Savior, and the Holy Ghost.  I love them because they loved me first.  I love my parents because they loved me first.  It is amazing to me as I know I don't, of my own merit, deserve their love.  There are to many times I've been disobedient, self righteous, unteachable, proud, arrogant, and just more concerned about myself than those who have loved me so.  But, I really have learned that not only would the Savior not coerce my obedience because of the inherent unrighteousness in it, but he also only wants us to return because we want to, because we love him enough to do what he asks.  Because I love him, my faith has grown enough to know that whatever he requires is right and good for me...he is helping me to become what he knows I can become, if I love him enough to trust him and do as he asks!  I don't know why I have this privilege of experiencing this disease, but I'm sure that there have been and will be many spiritual opportunities in my future, and I will experience and feel his love through all the prayers and support of by those who continue to love and support me...regardless of my many faults and who are his disciples and his hands!

The Temple and Driving School - September 27, 2016

When I had my appointment at Vanderbilt with Dr. Keedy this summer, Rich was pretty anxious about not missing the appointment or being late.  That really is nothing new if you know Rich.  But the crazy thing is that we had oodles of time but Rich was flying low, you could feel his anxiety.  As we hit Lebanon, TN suddenly he slowed down...yes...he had been caught speeding.  After receiving his ticket and we had a chance to talk I realized that his anxiety was because he'd done a reversal in his mind of the time.  Our appointment was for like 10 am and he knew it was central time, the car and our watches were set for eastern, but I think he was thinking they were central...I don't really know...but his little speeding ticket was going to cost us something like $300 and points on his license.  So, instead, he opted for driving school at $150 which would mean traveling back to Lebanon for the four hour class, but no points on the license either.

So - tonight was the class.  We had discussed it and decided that I would drop him off and I'd drive over to the temple and be able to get a session in and be back to pick him up just as he'd be getting out...he might have to wait a few minutes but not long.

We drove over, stopped for supper at Jack in the Box, dropped him off, and then I drove to the temple.  It took me a little over an hour (about 70 min) to get there.  Just as I was turning off the main road I had the impression that I needed to return to the driving school.  And when I turned into the temple parking lot, the same feeling returned.  I parked and pulled out my recommend and pondered momentarily whether that really was a prompting.  I decided to enter the temple, place a few names I wanted to put on the prayer role, say a prayer and go to the bathroom.  My prayer was simple, I knew that my desire to go to the temple was a good thing, a righteous thing...could it be that it was not what I was supposed to do?  I received the same impression and left the temple, climbed in the car and headed back to Lebanon.  I just decided to trust those promptings even though they made no sense.

So I pulled into the parking lot of the driving school about 8 pm - truly I'd had a nice drive.  Within 10 minutes or so of parking I was surprised when the door of the school opened and all of the students started leaving.  The class was out over two hours early!  Had I not heeded the promptings Rich would have had to walk quite a ways---the better part of a couple miles to get someplace safe to wait for me in an area of town that wasn't so great. 

To the casual reader this would not seem like such a big deal.  Perhaps a coincidence.  Or to someone who never questions whether or not the voice or feeling they are experiencing is the spirit or not - they would never know how often I have struggled to know and trust that voice.  It seems that there is always a running voice in my head and trying to determine what is my voice versus the spirit isn't always very easy for me.  I have often wondered how I got to this advanced age and yet still struggle with this.  Rich and I have had this conversation many times and he has often come down on the side of, "if you're trying your best to keep the commandments and do what is right, you probably are living by the spirit...you just may not be aware of it since that is a natural state."  To which I have often scoffed and wished it were true, feeling certain that if that were the case, wouldn't I know it?  It isn't that I have never felt the spirit.  I often have. But today I felt the unmistakeable promptings and didn't really question that it was the spirit.  I just trusted.  And it felt wonderful!  And I really do know that it was a tender mercy to have received those promptings and I feel so grateful that Rich is safe and that all worked out as it should have!

"I Love You Forever and Ever, Amen!"

Intellectually I knew that when I had chemo that my hair would fall out.  It wasn't a foreign concept.  I've seen it before.  Processing it intellectually is different than processing it emotionally!  Trust me!  And while I know it is a trivial matter in comparison to the troubles of the world... it has rocked MY world somewhat.  I don't know if it is the cancer, the chemo, the hormones of my advanced age, or what...but several times I have found myself teary as I've tried to get used to my new look.  I know it takes the brain about three days to visually adjust to images...but somehow I don't think three days is going to cut it! Lol!  There is no way my hair is coming back that soon either.

So...I have had therapy sessions with my daughters off and on through the last few days and they have done their best to cheer and encourage me and give me ideas to make the most of my changing appearance.  Rich has listened and held me when I have felt uncertain and off kilter.  For the most part, I have taken it in stride...but there have been moments when it has seemed overwhelming and my very femininity has felt in doubt.  I've tried to explain to Rich that it's kind of like being full-term pregnant.  Intellectually you know you're female - after all no guy is going to be in that state!  However, there is no way you FEEL feminine!  You just feel like a house!  This is so similar!  Obviously I'm female...I just don't FEEL very feminine!  

Today, while I was studying my scriptures and Rich had gone to therapy I received a text from Rich.  It was so perfect I found myself in tears...the good kind😍!  It read, "Woman please follow this link.   https://youtu.be/sgJXbIP83A8 Know that I love you!"  Then, "I've been trying to tell you I'm in love with you not your hair Randy Tavis says it very good.  I love you forever and ever amen!"  How did I get so lucky?  How grateful I am for his love, support, understanding, kindness, gentleness, and respect.  He listens to me with his heart and while all my roller coaster emotions may be in overdrive sometimes, he doesn't discount them!  And when I least expect it, HE ROCKS MY WORLD IN THE VERY BEST WAY POSSIBLE!!! I love HIM forever and ever, Amen! ❤️💕😘😍❤️

I Have Cancer

Today started off well enough...until I started running my fingers through my hair and big globs came out.  I'm afraid I probably hurt Desi - she was asking about hair color and style (she's getting her hair done tonight) and I shot back with something like, "be grateful you have hair!"  It was no sooner posted than I wished I could have taken it back.  I wish and hope with all my heart that those around me will treat me no differently and include me in their conversations and then I do something like that!  Ugh!  My only defense is to say I'm trying to learn...but reality is I should have known.  I'm so blessed with such wonderful kids and husband who are patient beyond belief!

Tonight I came upstairs and decided I was going to shave my head.  I started and Rich finished.  I've known since June that I had cancer - leiomyosarcoma - but tonight it feels real...more real than it has somehow.  I wonder why?  You would think it would with the biopsy, the scans, the dr. appts, the chemo - but somehow this is the thing that makes it real.  Go figure!

President Monson and Dad

Today was the last day of General Comference.  I enjoyed the sessions immensely and as always, look forward to rereading the talks as they are published.  However, President Monson's talk was particularly poignant to me.  He opened with sharing his experience of attending the New York World's Fair in 1964.  The Church had an exhibition there known as the Mormon Pavillion and debuted the film "Man's Search for Happiness".  President Monson shared viewing the film with a gentleman who was about 35 years of age and others in the theater and as the people were leaving the film some were visibly touched.  The man that sat next to President Monson remained in his seat and marveled, "It's all true!"

As President Monson shared his message my mind drifted back to Dad.  All of my growing up years...in fact...for all of my life really...Dad wore a gold question mark lapel pin.  It didn't matter if he was working, going to church or some other place.  One day I asked him why he wore it.  He told me that he wore it always hoping that someone would ask him "the golden question".  When I asked what the golden question was he told me it was actually a series of the most important questions ever to be asked and that we had the answers.  He said the first question is, "where did we come from?"  The second, "why are we here?" And the third, "where are we going?"  

It was my Dad that first shared with me and my brothers The Plan Of Salvation.  He drew it out on a sheet of paper and I was just like the man in President Monson's story...I KNEW it was true!  Every single bit of it.  No doubts EVER.  I know that Dad asked and answered the golden questions at least a gazillion times.  It seemed that nearly every few days Dad would come home from work and share an experience with someone that he had talked to about the gospel.  He was fearless!  He knew that the knowledge we have is priceless and he tried with all his might to bring that knowledge to others.  In so many ways he will always be my hero!

Yesterday was a beautiful sabbath and I was so blessed to attend church.  Sometimes I wonder why and how it is that so many count themselves "spiritual" but not "religious".  I feel so grateful that I was raised in the church and that my ancestors recognized the truthfulness of the gospel and joined the church.  I have no idea why I was allowed to come to the home I did, but I am sooooo grateful!  From my earliest recollections I have known the truth for myself.  When I was a teen I remember sitting in my room, on my bed, looking in a mirror and asking, "who am I?" and tossing the mirror aside and answering myself with, "this is stupid!  I am a child of God!"  

Today I went to the church and practiced the organ, got Moroni's birthday box ready, did a little shopping, and Rich and I went to our family home evening group. Again, what a blessing to have such great friends.

Also - today we were surprised with the glorious news that the kids are planning a family reunion in March!  At Kitty Hawk!  How cool is that?  I have no idea what all they plan but I'm so touched by their efforts to put this together at such great sacrifice to each of them!  How blessed am I?

I awoke this morning with thoughts of actually accomplishing something!  But, alas, I still was experiencing some nausea and instead headed back to bed.  Rich and I found ourselves watching "Bones" - somewhat reminiscent of our many hours watching programs when we've been struggling with health concerns over the past few years. 

Many years ago, when Cherstin was just a baby, Lexie and I took a basic smocking class from a lady who lived in a nearby village in Germany.  It was something I wanted to do and was delighted that Lexie wanted to do it too...it's always more fun when you get to do something with a friend.  The teacher was really good and I enjoyed the class immensely.  I decided on doing a panel for a pinafore for Cherstin.  I got it smocked and even constructed the basic pinafore (minus the hem) and only needed to make the dress to go under the pinafore when we moved to South Carolina.  Needless to say, I didn't get the dress made and when the house went up in flames, the fabric to make the dress went up with the house...but the pinafore was pulled from the ashes, heavily stained from the soot and ashes.  Over the ensuing years I tried many different remedies to try and get the stains out, including some rust, to no avail.  After moving to Tennessee I found the pinafore and decided to take it with me the next time I visited Cherstin.  I doubted that she would even want it since the stains were so prominent and I had been on the lookout for several years for fabrics that might be used to replace the stained fabric but the color ways at that time offered no solutions.  When I took my next trip to Oklahoma Cherstin and I went shopping at their local Hobby Lobby.  At the cutting counter was a display of "Grandma's Stain Remover".  The tiny bottle promised miracles and was only $2.99.  I decided to take a chance and bought the bottle, went back to Cherstin and Dan's and promptly tried it out.  By the next morning the pinafore was absolutely spotless!  Rust, ashes, soot, and all! I was so delighted!  It has been a favorite product ever since.  However...it has taken a few years for the color ways to change but finally I have succeeded in finding a fabric to make the dress to correspond with the pinafore. This morning I thought I'd make that happen, especially since Heidi is nearly a year and a half old and I would like one of Cherstin's daughters to wear it.  However, when the nausea wouldn't subside I threw in the towel.  It wasn't that it was that bad...just yucky enough to not feel able to focus.  My anti-nausea meds make me drowsy so Rich offered me one of his.  His actually said it could cause drowsiness too...but it wasn't until a coupl hours later that I realized it hadn't.  That's kind of a good thing to know!

This evening was the General Women's Broadcast.  What a lovely event and it seemed the messages were given just for me.  I thought about my daughters (and daughter-in-laws - except I hate making the in-law designations because I feel like they are just as much my daughters - loved and adored just as my own) and granddaughters watching and hoping that they too were feeling the power of these special messages for themselves.  I thought of my sisters-in-law and wishing they knew how much I love and appreciate them...and realizing that if they don't...it's because I haven't told them!  And then I thought of my Mom...how I wish I could talk to her...how I miss her...how I love her!

"Teach Me..."

Today Rich and I headed up to Morristown for our acupuncture appointments.  We have been doing this for a few months, but Rich has been going for several years.  I have found these sessions interesting and have used them to relax.  Since my cancer diagnosis I have also found my session a wonderful time to meditate and pray.  Regularly I have been asking the Lord to teach me what he would have me to learn and today the sweet whisperings of the spirit prompted me to "write."

I have been intending to write more - my life story, memories, things about my parents and siblings, Rich, the kids, things I would tell my children and grandchildren, my worries, hopes, and dreams...but at the end of nearly every day I crawl into bed and, if I think about it at all, I tell myself I'll write tomorrow.  Sadly, tomorrow never comes.  But today I will write...and I hope to follow the promotings received today and write every day from now on...but knowing my history I feel reluctant to make such a declaration.

Monday I received the first round of doxorubicin.  Things went pretty well but I'm beginning to feel some breakthrough nausea once in a while and I think I'm also beginning to get the dreaded mouth sores that have been on my radar.  I'm trying valiantly to keep up with the soda/salt/water mixture but I think I severely underestimated the time frame that I needed to be vigilant in...I didn't realize that it would be in the latter part of the first week and the second week that would be so crucial.  I guess I'm learning.

Today I also got a sweet surprise in the mail.  The mother of a friend wrote a sweet and tender note to me.  She had learned of my diagnosis through her daughter and felt the prompting to reach out.  How many times have I felt those promptings and just let them pass???  And Joey and Wanda also reached out, as did Derk and Mike.  I'm so fortunate to have such angels surrounding me!  Each of my children, friends, loved ones, ward members, and my sweet husband continue to be such wonderful sources of strength.  I'm truly blessed!

Dr. May - Friday 26 August 2016

Rich and I had doctor appointments with Dr. May on Friday afternoon.  He needed to talk to her about getting the shingles immunization because Dr. DiMeo is changing one of his monthly injections to the newly FDA approved Nucala from Xolair. Evidently the risk of getting shingles rises pretty dramatically with the Nucala and the shingles vaccine should help with that.  He's already had shingles and, of course, chicken pox, so he's definitely at risk.  Because of his fragile health, she would only approve it for this and gave him a script for it as she said any dispensing pharmacy worth their salt would deny him the vaccine without it.  

Then it was my turn.  I have been very conflicted about treatment for the LMS.  The sarcoma specialist, Dr. Keedy, who Dr. Thompson (my local oncologist) sent me to see, recommended starting on doxorubicin ASAP.  However, when I saw Dr. Thompson, he seemed very reluctant to start it.  He recommended waiting until after Labor Day and then running a scan to see really how slow growing this really is and re-evaluating the next day.  He is really concerned about the med, especially that it's the first line med, and what it's going to do for my quality of life, especially when I feel relatively well, all things considered.

I acquiesced.  But, as the weeks have gone on, my discomfort level is becoming more a daily issue instead of an occasional bout, and my anxiety level has increased some, wondering if I made the correct decision, and really...what I don't know to make the decisions.

We spent almost two hours in her office.  She looked at path reports, scans, dr. reports, clinical trial offerings, drug info, life expectancy rates, everything and more.  And we talked about it all.  We talked about the fact that we really don't know what the growth rate of the primary tumor is because the biopsy was from one of the liver tumors.  In all cancers, but especially sarcomas, it is not uncommon for the mitotic rate and genetic makeup of tumors to vary some.  When the surgeon did the biopsy he went for the easiest, least complicated, and least likely to cause potential damage to surrounding tissues and organs...he went for the one he did.  It is NOT the primary tumor.  I knew all of this but really hadn't put it together.

We talked about how right now I'm in good health, but as the cancer advances it will take its toll.  Duh! However, that also means that right now I have a better chance of overcoming the toxic effects of chemo than I will as the cancer advances.

We talked about the various kinds of standard treatments for LMS - there aren't many - and this, in my case, at least right now, is inoperable.  Radiation isn't even a good option.  Chemo is my best bet.  And, doxorubicin, AKA "the red devil", is first line defense.  She said that it is the chemo that all the movies and tv programs that depict chemo effects is based on....joy...."the red devil" to fight "the purple dragon" (AKA leiomyosarcoma) - sounds apocalyptic! Lol!  

We talked about the five year survival rate of about 20% is WITH treatment.  We talked statistics.  And we also talked about how staying alive is crucial in order to be around when better treatments and even cures come.  Five years ago there was no cure for GIST - today there is.  Knowledge is exploding but it will do me no good if I'm not around to take advantage of it.  And, of course, there are no guarantees anyway...in the end...the Lord is in charge.

In the end, her counsel was to spend time talking to my family and to pray about it.  As she hugged me goodbye, she asked me to consider two questions: 1) if I wait because this seems so slow growing but it gets away from us...metasticizes (it will probably do that anyway as the disease advances), will I regret it?  My answer is an emphatic yes.  I would. 2) if I fight this agressively and I end up with some, if not all, of the nasty toxic side effects, will I regret it?  No.  I don't want the side effects!  No one does!  But I wouldn't regret having tried.  Those two questions distill my choices and my desires to their very core.  Now...saying I want to fight and will do whatever it takes, when I'm feeling relatively good, is a LOT different than when it gets bad! But...I feel more settled than I have for a while!  And that's a good thing!

Tender Mercy - 'Mom Remembers' Cassette Appears

A few days ago I received a tender mercy from the Lord.  It is absolutely amazing to me!!!  Nearly two decades ago I had decided to get contributions of memories about Dad so that I could put together a memory book for him.  I received letters from quite a few people and completed scrap book pages from all of my brothers and the grandkids that were married.  Mom recorded some of her memories on a cassette tape.  I don't remember how she got it to me...mail?  When she came to visit? But I do remember having it in El Centro...in fact...I can remember sitting at the desk, when the desk was in the front of the family room (by the front door), trying to transcribe it and being frustrated at my lack of skill in such an endeavor, wondering if Wanda could do it better.  And then, it disappeared!  I searched every nook and cranny.  I tore the desk apart, the family room, my sewing room, my room, every place I could think of...to no avail.  I found plenty of cassettes but none of them were Mom's.  I hadn't given up ever finding it, but I seriously wondered if it had been tossed in the trash among papers and debris.  

I thought I might find it when we packed out for Kentucky...but I didn't.  I thought I might find it when I unpacked in Kentucky...but I didn't.  I hoped it might surface in Denver...it didn't.  By the time I got here in Tennessee, I was pretty certain it was lost forever and would never be found.

Well, a few days ago I was in the office and looked down on the floor, where one of the three boom boxes we own, sits.  As I glanced at the boom box I noticed that there was a tape in it.  I wasn't surprised because I have used these boom boxes when I have taught seminary, R.S., institute, Sunday School or just wanted to listen to something.  However, when I ejected the tape I was absolutely overwhelmed to discover it was Mom's!!!  I don't know what to make of it!!!  I have taken tapes in and out of this particular boom box many times and never seen Mom's tape.  Ditto with the other boom box.  In nearly 20 years I HAVE NEVER SEEN THIS TAPE!!!! And yet, it was in the boom box Saturday.

Ironically, none of the boom boxes tape players are working.  Rich played around with them to no avail.  We had no way to see if the tape was in tact.  We wondered if your can even buy a cassette player anymore.  However, a friend here, Charlene Jameson (and it is particularly interesting to me that she is a distant cousin - her GGgrandfather Rigby and our Samuel Roskelley families are connected) had a player that she loaned me...and the tape is, indeed, in tact!  It is Mom!  It's the tape of her memories she'd made for me!  It was lost and now it is found!!!!  What a miracle!!!!  I can't explain it but I know it is one of those sweet, tender mercies sent just to me.  I feel so humbled!!!

Rich was able to digitally copy it last night and I will be sending it out to family.  Actually, I'm pretty sure that Rich will be doing that!  Lol!  If everyone agrees, I'll post it to family search so that it can be preserved forever!  And, that's a second or third tender mercy!  I don't have to transcribe it!!!  And we get to hear it in Mom's own voice!!!!  Gotta' love it!!!!  

Dr. Thompson 2.0

Hey there!  I'm so grateful for your patience!  I will try and tell you all about our visit with Dr. Thompson (oncologist) this afternoon.  There is still much we don't know…but we do know a little more than we did this morning.

I caution you all…they are sending me to the sarcoma clinic at Vanderbilt where we will find the most up to date info on treatment, prognosis, progression, genetics, etc.  He cautioned us today to chill until we've seen them, and we have time to do that.

So – it is a sarcoma.  It is low grade, meaning it isn't growing quickly or metasticizing.  It is stage 4 – only because it has multiple tumors and involves multiple organs (liver, pancreas, duodenum, and I think gall bladder – don’t quote me on that).  He said staging isn't a big deal here because a stage 4 with some kinds means death is imminent but in this type (and others) there could be many years and potential cures before that happens.  He has been treating a stage 4 for 26 years and the individual is doing ok. So - don't let the stage cause you anxiety.  There will be potential problems that they will watch for and be ever vigilant about – i.e. Liver failure, digestion issues, etc. that they will work to manage as things go along and they can “de-bulk” a tumor if it gets in the way of bodily processes.  

The PET scan showed that the ct scan was correct – no other tumors were found, although my lymph nodes in the abdomen region are pretty large.  That is one thing we will be addressing with Vanderbilt. 

The importance of knowing that this hadn't metasticized from another area was great for me – a relief!  It appears that the original site is in the connective tissue that holds your internal organs in place – in my case, the mesenteries.  He said he'd never had a patient with this type of presentation 😜!  Again, it will be something we talk to Vanderbilt about!

So – they were able to do a LOT of research on the cancer and my genes.  It appears that there is a mutation on the TP53 gene – the gene that is supposed to inhibit cancer formation.  I asked, “how can we turn this on?” To which he responded, “Good question!  That's why I want you to see a sarcoma specialist at Vanderbilt.”

The TP53 gene mutation may be inherited.  The only one in my family with cancer, that I'm aware of is my Dad (prostate and skin) and my grandmother Pehrson (breast).  It is possible that it may have come through that line, or even another, I guess.  I could have also acquired the mutation through exposure to radiation, chemical or some other kind of toxin.  It may be that Vanderbilt will be able to tell us more about that.  

He said that if anyone in his family had the inherited gene he would have all blood relatives tested (it's a simple blood test) but recommended everyone just chill until we get to Vanderbilt.  

So – you can google TP 53 gene, li fraumeni cancers, and parp inhibitors (which may be a potential treatment – maybe – depending on what Vanderbilt says).  Again, don't freak!  I've probably had this a long time and in no imminent danger of death.  The reading may cause you to worry, but let me get to Vanderbilt for answers.  If you have questions that you want answers for, don't hesitate to list them and I'll bring them up with the specialists.

This cancer doesn't respond well to chemo or even much better to radiation.  He said that he wouldn't recommend it for me, especially if it is just done because you want to do something and don't know what else to do.  The risks just aren't worth it, in his opinion.  Again, Vanderbilt may have more options.  

My next appointment with Dr. Thompson is in a month.  In another couple of months they will probably do another scan to see exactly what the tumors are doing.  It will tell them how aggressive they need to be.  And, if things go from my current state to downhill in the meantime (very, very unlikely) I can always head to the ER.

His office is making the appointment with Vanderbilt and will be calling me in a day or two with that info.  

I really feel comforted by all your fasting and prayers!  Thanks so very, very much.  I'm feeling pretty upbeat and really believe that things will be ok.  My goal, and Dr. Thompson’s too, is for me to stay healthy and strong, for as long as it takes!  There is a tremendous amount of research being done on this particular problem right now and breakthroughs are coming fast and furious!  It has been one of my prayers that the researchers will be lead and directed to find answers for my situation, and for all who have health problems!  I love you! 

Today has been a great day in many, many respects.  There have been moments when things have had some soberness, but all in all, it has been a great day.

I had a lunch date with a good friend (Rebecca) and we decided to include our husbands.  Just as we were going to pick them up Rich received a call that a sister in our ward (Pam O'Brien) was in the hospital and needed a blessing.  Since we were picking up Gerald, we just took a detour to the hospital.  Pam had a heart attack on Monday and had an 8 hr ordeal just to get to her phone to call 911 when she collapsed!  The EMS took her directly to the cardiovascular surgery area where they learned she had 3 blockages and put in 3 stents.  However, things went south yesterday and they needed to do another stent yesterday!  Since she lives alone, you can only imagine how frightening this must have been for her.  Today she was able to get to call the missionaries, who in turn, contacted the bishop and then he contacted Brother Duke (hp gp leader) and he called Rich...what a glorious chain of priesthood who were able to get to her and provide the support she so desperately needed!  Later tonight I went to the hospital to visit her.  It has been a rough week, but I'm praying she is now on the mend!

After the hospital we headed to Abuelos for lunch.  It was delicious and the company was terrific!  We then headed over to Jo-Ann's so Rebecca and I could pick up a few things....Rebecca found things but I left empty handed...think I just need to finish what I've already got started!😜

We also learned that Georgia is improving from her illness - that's great news!  And - we learned that Felicia isn't having an irradiated baby - that's also great news!  Yesterday when Felicia took Georgia in for X-rays the tech took no precautions to protect Felicia in case of a possible pregnancy.

I also had a chance to talk with Emily and Desi.  That was good too.  I learned that Kathryn is having surgery to take out a tumor on her kidney.  Thankfully the tumor is benign, but it will be a difficult surgery.  She is in my prayers, as is Tom's Dad, Richard, and Dan's folks!  

So - got up, showered, and was preparing to leave for my scan when I queried Rich as to whether or not he'd heard anything about the scan.  He hadn't, nor had I, but he decided to check the house phone and found that yesterday afternoon Dr. Thompson's office had called and cancelled my appointment as they hadn't received authorization from our insurance. Ugh!

After the office had opened, Rich called them and talked to the woman who'd called to learn about the hold up.  Then he called the insurance company.  It was shortly after that when I received a call from Dr. Thompson's office with an appointment for tomorrow morning at 7:30 am.  We need to leave by 6 so it's going to be an early morning!  But, at least it will be done soon enough for our appointment on Monday!

Today was a pretty interesting day - to me anyway.  Rich had made an appointment for both he and I with Dr. May for last week but she had to reschedule for this morning.  Rich, being on Medicare, had his leg tens unit supplies provider change and needed a new script for the new provider.  And, I wanted a refill on a script and a chance to talk to her about my situation.

When she came into the exam room she gave me a huge bear hug...have I said how much I LOVE her????  She told me that when she had examined me three weeks ago she had been alarmed and felt that the diagnosis was going to be pancreatic cancer and that I would only have a couple of weeks, at best!  I had felt her concern when she decided to have the ct scan without contrast run asap, rather than wait another day, but she hadn't ventured a guess to me, preferring to have the test run first.  I'm grateful, on so many levels, that it worked that way...I was already concerned!

She was able to tell me about the tumors/masses.  Up until today, I had known there were "some" but the concern had always been about the mass that is in the midline of my abdomen, where the liver, pancreas, gallbladder, duodenum, etc. are all situated.  Dr. Thompson had told me it was a "big, ugly, gnarly mass" but I guess I was still kind of shell-shocked and didn't even think to ask many questions.  And, Dr. Thompson had been preceded by Dr. Pallard, the radiologist, Dr. Palmer, Dr. Culbert, and Dr. May.  My guess is that none of them knew what the others had told me or what hadn't been shared!  So, it was interesting to learn that there are multiple masses, I think there are six.  The largest is 8 cm (roughly the size of a softball), three are in the 7cm area, one is about 6 cm, and another 4.5.  The PET scan tomorrow will provide us more information to determine if  there are any more and where they might be.  These masses are in/on/through the liver, pancreas, and duodenum.  She agreed that surgery, while the standard procedure, is probably not the option here.  However, as the masses increase in size they could impact the function of one or all or even other body functions and said that if that happened they would probably "de-bulk" the offending mass surgically.  But she is as hopeful as Dr. Thompson that they will be able to map the gene that will turn these off and could even "dissolve" them.

Again, Vanderbilt seems to be the "go-to" place for this...but I'm finding myself reluctant where that is concerned as I want a cure...not to end up as a control subject in a research study.  However, I don't know if that is even what would happen....just say in'!

Dr. May also shared that it is still believed that this is "low grade" - meaning it isn't metastatic.  I sure hope so...but again...the PET scan is going to tell the tale.

Next Monday I will see Dr. Thompson again.  I'm sure the PET scan results will be back, but I'm not sure about the advanced procedures since it seems like determining what to do here could take a few weeks...if not more...but both Dr. Thompson and Dr. May feel we have time to figure this out!  And, I'm generally no different than I was a few months ago...just I know what the discomfort is and I feel every twitch or rumble more acutely just because I know! Lol!

Dr. May again reaffirmed that there was no way to test for this, that it wouldn't have been found even now if it weren't for the fact that they are large enough to be causing discomfort.  I told her I was puzzled about this as Dr. Thompson had intimated that this could be genetic and that I had no relatives with this, to which she replied, "that you know of!"  I am puzzled...and I find it extraordinary that Mike, Brad, and Chad have all had pancreatitis and Derk as been experiencing discomfort in this region of his abdomen.  Coincidence?  Probably.  But it sure seems like unlikely odds.  There is just so much we don't know!  

Rich and I also drove up to Morristown for our acupuncture appointment.  Then stopped at 5 Guys for dinner, over to the pharmacy, to the church to practice the organ and finally...HOME...SWEET...HOME! Guess I'll hit the hay as we need to be up early to head to Knoxville for the scan.  With any luck I'll be home by noon and able to get some work done!

We're Off to See the Oncologist...

Today was the day we've been waiting for, but dreading.  My anxiety level was pretty high last night and this morning as well.  The unknown can be a exciting or worrisome, and I was definitely more worried than excited.  Rich was so comforting and I just wanted to be cocooned away instead of facing it.  It reminded me of my first knee surgery - as we drove out of the driveway that morning I said something like, "We can just call and cancel it...it'd be ok."  Rich's response was a thundering, "Nope! We're going through with this!  You've been hurting too long!" And off we drove...and it was brutal but it gave me my life back!

This morning he was tender and supportive - he's so good for me!  

There was the obligatory mountain of paperwork to fill out as a new patient and then we were ushered into the exam room.  Nerves! Nerves! Nerves!  Seemed like forever (it wasn't) but when we finally met Dr. Thompson I was instantly at ease...and I think Rich was too.

Dr. Thompson told us right up front that the pathology report was not yet complete but he had contacted the pathologist doing the report and learned that the mass is indeed cancer - leiomyosarcoma - a class of cancers known as sarcomas.  He told us that it had been there for several years - at least two or three - and is very slow growing.  It also has no metatastic activity right now and that is a good thing!  The only reason I know about it now is that it has grown to the point where it is causing me the grief that made me seek out treatment.

The usual treatment is surgical removal but this mass has wrapped itself around and through the liver, pancreas, gallbladder, etc. and so surgery is probably not the best answer, although it hasn't been completely ruled out.

The pathologist is sending the report and samples somewhere for an "advanced directive" - I don't think that's the correct term but essentially it is a place that does the tests necessary to determine the best possible treatment for the type and location of the mass.  There is a possibility that there might be therapy that would, in a sense, turn off the gene that causes the cancer to grow and even matastecize.  In the meantime they will do a pet scan to try and see where this came from as it is a smooth muscle type of cancer (found usually in ligaments, cartilage, connective tissue, uterine walls, bone, etc) but wasn't found in the scan they initially did so perhaps it is somewhere else.

In the meantime he told me to relax and enjoy life to the fullest.  He told me that this wasn't a result of something I had done or not done...it just is.  I was relieved with that piece of info!  He told me they will need to treat it agressively but right now they have the time to find the entire scope of what is going on and also the best treatment.  I will meet with him on the 18th, after the pet scan and pathology reports are back.  He talked about sending me to a clinic at Vanderbilt (in Nashville) where they treat just sarcomas, once they have everything back...but that isn't for sure either.

Perhaps the best news is what it is NOT!  He told us that if you had a hundred doctors study my scan the vast majority would conclude it was pancreatic cancer.  Some would conclude it was colon cancer, and a small number might think it was gallbladder cancer.  NONE would have guessed this - I guess it's quite rare.  If it had been pancreatic cancer my life expectancy would have been somewhere between 1-6 months!  Dr. Thompson said it was a "big, gnarly, ugly mass" though!

Needless to say - I feel so very grateful that this isn't worse!  I have no idea what the outcome will be in the long term....but I'm feeling extraordinarily blessed to have each day!  I can truly say I feel the power of the prayers from all who have called upon the Lord for me.  And I know that the priesthood power is real.  And mostly, I KNOW that I am a "beloved daughter of Heavenly Parents". Who could ask for more than that?

Off to See the Oncologist!

Home - Provo

After Dad was discharged from the Army, Mom and Dad returned to Provo, Utah for Dad to continue his education at BYU.  We lived in Wymount Terrace, the university's married housing area.  I was really young - like 2 1/2 or so when we moved there so I don't have lots of memories...but the memories I have are my earliest.  

As I recall, the buildings in the old Wymount looked kind of like the base housing in Germany.  There were three floors, I think, and I'm not sure, but I think we lived on the second floor.  I remember that there was a shower in the bathroom, but no tub.  I remember mom had a metal/steel wash tub that she would fill with water in the shower and bathe me.  I remember the kitchen table and mom cooking meals, especially breakfast, and I remember that Mike was just a baby when dad would hold him on his lap while mom was cooking breakfast and invariably, mom would give dad his plate and Mike would sneeze all over it and dad would groan and sigh with a, "Geeeze! Every morning!"  I can still hear him say it! Lol



I went to nursery school somewhere close, probably in someone's home.  I don't remember much except that one day Johnny Weismiller threw sand in my hair and it really upset me...probably just a little girl/little boy event!  



I remember taking my dad to the hospital so that he could have his tonsils out.  He had to stay there for a couple of days and it was kind of scary to me.  I remember visiting him and the doctor telling mom that he had hemorrhaged and I could feel my mom's worry.  I also remember going with her to a furniture store to buy our first tv - she wanted to surprise dad with it when he came home from the hospital for his recuperation.  We had that tv until we moved to Germany in 1966, even though several years before that dad had taken the tubes out of the tv to check them at the Albertson's on State Street...but I think it must have been the picture tube because all it was used for until we moved to Germany was a stand for another tv. Lol!



I remember Dad being called as ward clerk in our ward and feeling pretty proud, even at that age!  I remember him walking up and down the aisles of the ward, counting the attendance and thinking he was so important! Lol!  I remember Mom sharing that this period of time was a difficult time for her and Dad - probably due mostly to their long separation while Dad was in Korea and Japan, and I'll bet Dad struggled a bit with some ptsd too.  Mom shared that Dad went to a bishopric meeting one night and he stayed and talked with the bishop for a lengthy period of time after.  She told me that when he came home he was miraculously kind of changed and things went much easier from then on.  She said she never asked about what he'd shared but she was grateful for the bishop and Dad's visit with him as I think she'd felt their relationship might not make it sometimes...but from then on she felt the peace come that only the Lord can provide.  I would suspect that that experience, and others like it, were some of the reasons he was such a great bishop himself.  He knew what it was to struggle, to feel unloved, scared, lonely, worried, or confused and he loved people.  



I also remember one particular Sunday when we were headed to church.  Mom and Dad were ready to walk out the door and just needed to get Mike and so sent me ahead of them down the stairs.  It seems to me that they warned me to not take my tricycle out and ride it as it was Sunday.  However, whether they warned me or not, I took my tricycle out of the entry of the building and up the gentle incline of the sidewalk at the end of the building and tried to ride it.  I tipped it over and tore up my chin, bleeding all over my dress and trike and sidewalk.  Obviously they were just coming out of the building and my screams and wails were probably loud enough to wake the neighborhood.  I remember feeling so guilty as i had disobeyed and I knew I had broken the Sabbeth...I was sure that was the reason I had fallen. I was also feeling guilty because Mom and Dad had discussed what they needed to do and it was obvious that I was going to have to have stitches so Dad wouldn't be able to fill his calling as Ward Clerk because I would need to go to the hospital.  Needless to say, I did end up at the hospital to get stitches.  Dad took me in to the treatment room and Mom stayed in the waiting area with Mike.  However, I guess when the Dr. started to give me the numbing injections Dad passed out and the Dr. had Mom come in with me and had Dad sit in a chair with his head between his knees! Lol!



I remember the day that Dad graduated from school...President David O. McKay came and passed out the diplomas.  Even then I was impressed.  I wore a pink dress that I had worn or would wear wear for Muriel's wedding...I was the flower girl...but I don't remember who Muriel is!



Finally - I remember Mom driving the car up to Salt Lake City and riding with Dad in a truck with our household goods to our new home which was the east side duplex next to the home that Mom and Dad would soon purchase and become our family home on Delno Drive.

For me - these years we foundational.  We had family prayers, played together, had story time, and I became a big sister.  I felt loved and secure.  Indeed, we was born of goodly parents!

Biopsy Day

We had to be at the hospital at 6 am.  I would much rather be one of the first patients in for a procedure that later in the day, so it was fine for me...and I'm a morning person...Rich really isn't!

When we got there it wasn't very long and I was called back.  Of course there was the obligatory blood work and iv line which went smooth enough because I have great veins.

As I was taken back to the procedure room it became evident that there was a little hiccup.  Evidently it is usual protocol that a patient has seen the dr BEFORE the biopsy instead of the reverse and it became quite evident that the hospital staff was unsure if the biopsy would go forward.  However, the surgeon talked with Dr. Thomson and they took a little bit of a history of me and decided to proceed.  Yes!  Although - if truth be told - I had said a silent prayer that the Lord would open the door if that were His will - so my personal belief is that it was another, in a long string, of the Lord's tender mercies on my behalf.  As I reflect on these miracles I feel so humbled to know how blessed I am. 

The surgeon indicated that there were many things that could be going on but again, the major concern is the mass in the midline of my liver, where the pancreas, duodenum, and liver meet.  He said it could be liver cancer, benign tumors, infection, matatastic cancer, or even lymph nodes...and reiterated that is what they are hoping to discover by the biopsy.  He seemed to infer that there were other "spots" or "locations" but wouldn't (and I tried valiantly to get him to discuss this) go there.  I was left wondering if he meant there were other parts of my body that were suspicious (that I had inferred were ok from the initial discussion with Dr. Culbert) or if he was referring to addional spots on the liver, but he just wouldn't go there...he was laser focused on his task and perhaps that really is the best.

In any event, the procedure went well and it's another tender mercy!  I had thought I would be home shortly after the procedure but hadn't realized I would need to be on bed rest for three hours before I could leave...the liver is very vascular and the risk of hemorrhage is pretty high...so I just laid, slept on and off...and waited for the hours to pass.  By 1 pm I was finally on my way home.

We stopped for a bite to eat and then I wanted to check out plastic totes at Walmart.  But, I really hadn't gotten too far into Walmart and realized that I just needed to go home and rest for a few hours.  I went upstairs, Rich followed, and we both took a couple hours nap.  I felt much better after that and Rich REALLY crashed hard...finally!

While Rich continued to snooze I went and worked on a quilt, fixed some supper and then we just kicked back and relaxed for the evening.  All in all - I'd say it's been a good day!  My anxiety now rests with concern that the pathology report be finished for my appointment with Dr. Thomson on Friday...but we'll see....  

Today and Concord, California (Residence #2)

Today has been an emotional roller coaster.  We started our fast yesterday as we knew that some of our family would be fasting today and we wanted to join in, knowing that the biopsy will be Wednesday and I had requested a blessing from Rich and another Elder of his choosing.  All morning I struggled to gain control of my emotions.  One minute I was able to concentrate and then the next I was worried and fearful.  I have been praying for peace and understanding, and to have my faith strengthened, knowing that no matter what the outcome, I will need these great blessings.  The messages of Sacrament Meeting, Sunday School, and Relief Society were all tailor made for me it seemed.  After meetings I met Rich and Brother Dahl for a blessing.  I knew that Rich would be ever stalwert, but anxious as I think this blessing seemed to loom so large.  As Brother Dahl anointed and Rich sealed the anointing with the blessing, my tears flowed freely, and peace descended. It has remained with me all day and I count it a the most exquisite blessing!

These last few days I have ever considered more deeply the character of the Savior.  As I have struggled to keep my balance, to keep focused on the important, to not give in to the fear I have contemplated how extraordinary the Savior's last days, maybe even weeks and months must have been.  There is no evidence that he EVER turned from the throngs of followers that sought his help, the teaching that he continued to do, the organizing of his kingdom, and I'm sure that his own personal needs for rest and food were often the last things he did.  And, yet, he must have been weighed down mightily by the knowledge of what would shortly come to pass...The Mt. Of Olives...the trial...the scourging...Calvary...and yet he persisted in being about his Father's will instead of worrying about his own health and welfare.  If anyone had reason to run or fear, it was him!  But he steadfastly stayed the course.  He stayed focused on others, his mission, his Father in Heaven.  Wow! What big shoes I have to follow!

To continue with my life story questions....

When Dad went to Korea, Mom and I went to live with my Gandmother Roskelley in Concord, California.  I've always felt a deep connection to my Grandma.  Perhaps it is because of the time that I spent there with her at this time.  Who knows?

Mom tried her best to help me know my Dad through photos and letter, but I was just 4 or 5 months old when he left and nearly two when he returned.  Evidently she had a photo of my Dad in his army uniform and when my Uncle Vance came home I assumed he was my Daddy, because he wore a uniform and was male.  He was my "favorite" uncle, by the way!  Lol

It was while we were staying with Grandma that my Grandfather passed away...in July 1954.  I believe Mom was there when he died.  And, I believe that his last words were something  to the effect of, "take care of your mom".  I've always wondered how his wife must have felt about that...but I think he really did love my Grandma, even though they had had such a rocky relationship.

As I have been doing work to get through mountains of paperwork and old pics I have had the opportunity to look into her and Grandpa.  I don't know much.  She was born in Massachussetts and was married previously, with three children from that marriage.  I called Cathy and Gayle (my cousins) to see what they knew, especially since she hadn't died until 1984.  I don't remember ever meeting her in all the trips we made to California as a kid.  Gayle's mother intimated to her that Catherine (Gandpa's wife) had been kind of a money grubber....although I can't imagine that Grandpa had anything much to grub!  Lol!  Kathy just dismissed the inquiry - probably because she really doesn't know anything more than I do.  Neither of them have any memory of her.  I did a cursory check on the kids and found her and her first husband and kids on a 1940 census and then found a death record for the husband.  It would seem that they (the family) ought to be sealed.  I need to see about where the temple work stands.

Also - I pulled my Grandma's adoption record and will work to get the work ready to have her sealed to him.  I think she deserves that...however...I will fast and pray about that this coming Sunday before I do it.  And I'll prepare his parents family at the same time.

When Dad came home from Korea and Japan Mom and Dad stayed in Pacific Grove for a few months until Dad was separated.  When Joey and Carlie had Gideon, Mom and Dad were able to come to the blessing.  We slipped out afterwards for a trip down there and it was fun to take a walk down memory lane with them.  

Denver 2016 - Milly and Mordecai

It has been a very eventful month. Even though Desi wasn't due to have Milly until the 2nd of May, I knew she'd have her earlier than that...and she did...on the 13th of April! Needless to say, we hadn't left yet so we made final preparations and left town on Saturday. It was so good to meet little Milly. She looks just like Mordecai! She's tiny, pretty quiet, and absolutely adored by everyone. Desi took her in for her one month dr appointment on this past Monday and was pretty thrilled to learn that she's gained weight to 7 lb. 7 oz.  During our time there I attended a "Mother/Daughter Tea" with Desi and Emily put on for the activity day girls for Mother's Day, attend two pinewood derbies - one for Mordecai and one for Emily (they both won), attend field day for Emily and Mordecai, their piano recital, and the play that they were in from school - Lion King, Jr. Felicia and Tom and Noah and Georgia came down about a week after we got there. Tom was there just a day and then flew out to Maine to be with his parents for a week (his father had a lung removed a week and a half earlier due to lung cancer). While he was gone we drove to their new condo in Rock Springs for the night, got up the next morning and drove to SLC, drove back to Rock Springs and then drove back to Denver the next day so that we could spend some time with Joey, who'd flown in to run the Spartan Race with Mike. While we were in Utah we went to the distribution center, visited the cemetery to see Mom and Dad, and went to dinner with my brothers. We also got ice cream at the iceberg with Joseph. We left Tuesday to return home and arrived here early this morning. It feels good to be home and of course, we went grocery shopping today since there wasn't much to eat! Lol! And it is nice to know that Joey returned safe and sound, as did Felicia and family, and that Desi and her little family can get back to normal!    

 

What a Week!

Thursday, June 23, 2016   This has been a whirlwind week, in many respects, and it only promises to get more harried as the next few weeks and months come.   For a few months I have had recurring bouts of not feeling very good…food not settling, gas, just a general kind of malaise.  Symptoms have been vague enough and infrequent enough that I just haven’t paid them any attention.  When we were at Desi’s in April we went to a donut shop our first weekend there and I ate, against my better judgement, an apple fritter.  All the family knows I don’t do well with sweet things on an empty stomach, I think it's kind of a hypoglycemia type of reaction, and can end up feeling really yucky for hours afterwards.  My reaction is strong enough that I rarely do…in fact…I’d rather have nothing than a donut.  However, against my better judgement, I ate the apple fritter and immediately I was miserable.  But this time the misery just didn’t go away.  I was sick all Saturday, Sunday, and even most of Monday.  Rich and I both noted that I had been having similar trouble off and on, however not for any length of time, for long enough that perhaps I ought to get things checked out when we got home.   For the rest of the trip I seemed to do fairly well but I did note that I wasn’t eating as much and I was glad as I have been working on trying to be more diligent at measuring and logging my food as well as being mindful of what and how much I am eating…hoping to finally come off conquerer in the ever present weight battle.   I came home and for the last month it has been pretty much the same…until last week.  All week seemed a little more yucky than normal but again, I didn’t pay much attention to it.  But by Friday I was miserable.  We had been in Morristown for acupuncture late Friday afternoon and so we stopped for dinner at a new restaurant there called Holston’s Kitchen.  I ordered the cod and ate all the cod and most of the Cole slaw but I knew I was uncomfortable.  All evening I was miserable.  I was miserable on Saturday.  I went to practice the organ, ran to Sam’s for Father’s Day items for the ward, and came home and just sat.  I didn’t fix a meal and couldn’t eat…and didn’t want to eat.  I tried an enema, thinking that I might be constipated…but it wasn’t effective.  So I took a stool softener and just tried to relax.  Sunday I went to church, played the organ, went to my classes, and came home…again not eating a thing.  Poor Rich!  It was father’s day and I didn’t even fix anything to eat!  I had seriously thought about going to the ER but decided that if things weren’t better in the morning I would make an appointment with Dr. May in the morning.   Come Monday morning, about 5 am, I knew that things weren’t any better.  I was up for an hour or so and then slept off and on until I could call her office for an appointment at 8:30.  When I got through they told me that Dr. May had no appointments available but Dr. Culbert had an 11:45 appt. available.  I took it.  However, I had no sooner hung up that their office called back with the news that they had a 9:30 with Dr. May.  Tender Mercy!!!!!!   When I got there Dr. May was as thorough and caring as always!  I just love her!!!!  She squished around on my abdomen and noted that it was kind of bloated and that she could feel something hard.  She initially said she’d like to do a ct scan with contrast but then decided to just run a regular ct scan because it would be a day or two to get the one done with contrast and she could get the regular one done that day.  She ran some blood work and ran down an appt for the ct scan and I left.   When I got home I told Rich all that had happened and we just laid together, watched an episode of JAG and waited for the time to pass.   We got to the hospital at 2 pm for my appointment but it was nearly 3:30 before I got in.  Then I was told to wait in the reception area until my Dr. Called.  When the call came it was Dr. Culbert.  Evidently Dr. May had gone home early as she wasn’t feeling well and left her patients with Dr. Culbert.  He informed me that the radiology dr, a Dr. Barron, had called him with a preliminary report and it was their opinion that I should go to the ER and have them do a work up as there were “lesions” on/in my liver.   So, we headed down the hall to the ER, checked in, and finally saw Dr. Palmer.  He had the difficult news to give that the “masses” may indeed be cancer (although not for sure) and that he would talk with the oncologist to determine how best to proceed.  To say that Rich and I were in shock would be an understatement.  We just literally clung to one another, neither of us having words to express the flooding emotions we were both experiencing.  Then my sweet husband gave me a blessing.   It wasn’t long until Dr. Palmer returned with the news that he had indeed talked to Dr. Thomson, the oncologist.  Evidently Oak Ridge has a great deal of experience treating cancer because of the labs here…but liver cancer isn’t one of them and Dr. Palmer had thought it might be best to refer me to UT who would, but after talking with Dr. Thomson he recommended that they get me in to see him and have an IR biopsy done first so that we’d know what we’re dealing with and how best to proceed, who and where would be the best to treat it, etc.   We left with his condolences and best wishes, a script for Xanax (he was very compassionate) noting that this news was not easy to give and he could only imagine how difficult it was to receive.  He thought that the Xanax would help with the nerves, anxiety, and uncertainty for the next few days.  Rich quipped something like, “can you give me one too?”  I so wish he’d have been able to do that as I truly believe it is harder on the loved one than it is on the patient!!!!  Dr. Palmer had also had the opportunity to talk with Dr. May and he relayed her love and support in any way possible.  Did I say I just LOVE her????   During the few minutes Dr. Palmer was out of the room, Rich and I discussed how difficult this was going to be to tell the kids.  We seriously debated about the advisability of just waiting until after the biopsy, when we would know something for sure.  But, we decided that waiting would blindside them and as tough as this is, it would be better for them to know what we were doing.  It was a good thing too as just as we were walking out of the ER Felicia called, wanting news of the CT.  She had called while I had been at Dr. May’s and then as I was driving home, so she knew they were sending me for the scan.  I was able to tell her about our doings of those last few hours and she was concerned.     As I hung up from her, we drove to Kroger’s to get the script filled and decided to go get a bite to eat as I hadn’t eaten in 3 days and Rich hadn’t had a real meal in that time either.  Joey called next and we were able to share the news with him.  He too is concerned and keeping us in his prayers.  I was able to eat a little bit of my food and got a doggie box to bring the rest home…just not much appetite and not anxious to experience the pain and misery that seems to accompany whatever this is that’s going on.   We picked up the script, ran the car through the car wash, and got a bag of ice and headed home to call the rest of the kids…both of our phones were dead or near dead.   Our calls were made a bit easier as we had told Felicia that she could tell her sibs and that we’d call each of them as we could.  Of course they all have questions, worries, and concerns…but they all share with us their love and support and prayers.  What great people they are!!!!  How am I so lucky to have them as my children????  Each of them individually and all of them collectively are such blessings and examples to me…I can only hope to become like them someday!   That night I took a Xanax and slept like a log.  Rich, on the other hand, had a miserable night.  I hoped that he would crash the next night, but that wasn’t much better for him.  When he wakes this morning, I hope he’ll report he was able to sleep, if not, I will suggest we go see Dr. May for something to help him, at least until after we see Dr. Thomson.  His health needs are great and I don’t want him compromised any more than he has to be.   Tuesday morning I got up and prepared my institute lesson and gave it.  Rich had an appointment with his physical trainer and we ended back at the house just after noon.  We hadn’t heard from Dr. Thomson’s office, so, as per Dr. Palmer’s instructions, at 1 pm I called his office and scheduled a new patient appointment and asked about scheduling the biopsy.  The new patient scheduler couldn’t do that but gave me the number to call.  I did that and tried to relate was we needed (Dr. Palmer had actually given me a little script of what to say :).  She told me she would sent a message to Dr. Thomson’s nurse and she would know what to do.  Don’t ya love it?  In your head you think it’ll be so easy to just get in, get out, and everything is done in a few minutes!  But I did have the appt. with Dr. Thomson scheduled for the following Wednesday!   I decided that I would go visit a sister that I have been a VT to for years (and a good friend) in the convalescent home just down the street.  I left my phone with Rich so that if Dr. Thomson’s nurse called he could relay what we were needing and co-ordinate with her.  I knew the nursing home can have spotty reception.  I was gone about and hour and a half and indeed, Dr. Thomson’s nurse had called but said she needed to talk to Dr. Thomson and schedule the biopsy with the hospital.  She would call us in the morning. So – yesterday the nurse called and told me that she hadn’t forgotten me.  That’s always nice to know! LOL!  But, the hospital would be the setting the appointment and since this would require co-ordinating with surgery, anesthesiology, and radiology she didn’t know exactly when it would be yet…but she’d get back with me.   Then Dr. May’s nurse called to tell me that the blood work they had run Monday had come back with no significant abnormalities!  For some reason, it was as if a ton of bricks had been lifted off my shoulders!  I felt and continue to feel lighter in every way.  Dr. May had wanted to get the info to me as soon as possible so I hadn't had a chance to talk to her so I’m not sure of what it all really means, but I’ll take it!  The patient portal shows the lab work but it won’t open…and neither does anything on Rich’s…so it must be some kind of IT problem.   And, then Dr. Thomson’s nurse called to tell me that the biopsy has been scheduled for Wednesday, June 29th.  And, since Dr. Thomson will have all the results of all the tests by Friday, July 1st…my appointment was moved to then.  All in all - I'm feeling very blessed and grateful for all the tender mercies that just keep flowing in.  I have no idea where this is going but all that I can think of when my mind jumps the tracks and heads into the “What if…” Is the scripture, “Be still, and know that I am God.”  How grateful I am for my testimony of the truthfulness of the gospel and my knowledge and assurity that I am a beloved daughter of my Heavenly Father, that I am in His hands, and that there are no better hands to be in!!!!       Now I guess I better get my quilts done and get on that family history!!!!