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!