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!