C is for..... Cancer.... Yuck!

 

Part Deux

I sit looking out the window at the foothills of Salt Lake City as I eat a chicken alfredo and spinach calzone.  The food here has always been surprisingly tasty and not overly laden with salt or msg and the options are pretty good.  My favorite:  The baked potato with broccoli.  But thanks to Covid, its no longer available.  It was self-serve and, well, self-serve here is no longer a thing.  I just got off the phone with a co-worker as we determine some issues at work and now about to call a newly called, newly-assigned high councilor who wants to talk about some things going on in our ward at church.  (For those not familiar with how the Church of Jesus Christ of Latter-Day Saints is organized, A high counselor is a stake-level individual who assists wards and returns and reports to the Stake Presidency.  A Stake President leads a stake. A stake is a collection of about 6-12 wards.  A ward is a collection of local congregants/families who attend or have records with the church, somewhere usually between 300-500 people.) 

I am awaiting Tiffany.  She is going through what must be another fun experience that she has endured, over the last 9 weeks.  You see, sometime back in June of this year, maybe earlier, she started to complain about having back problems.  The kind where we tweak it and has some like muscle pain.  After rest, perhaps icing it, it didn’t go away.  As the summer kept on going, so did the back pain.  Eventually the docs had her try some physical therapy.  That went well, but the back continued to have a bit of pain.  After another little while, the docs decided to do an X-ray.  They found nothing, suggesting this was in her muscles.  More rest.  More relaxation.  More therapy.  And the back pain continued. 

Now, at this point in the story, note that this is not Tiffany complaining.  If something is bugging her, it’s truly bugging her.  After all she has gone through, she is about as tough as they come and little issues here and there she negotiates herself and moves past them.  But this was not something that she was moving past.  So, after 4 months or so of going back and forth on this back issue, the doctors finally decided to do a CT scan of her back to see if they could find out what was going on.  On August 25^th, she went in and did just that. 

And results came back:  Her back was just fine.  Nothing was found wrong in her back!

For better or worse, today’s technology allows us to follow the test results, often before the doctor sees it, or at least before they can talk to us about it.  So of course, when the result came back, we looked it up, seeing what we could find out about the back but in its place was the following (after a bunch of doctor jargon/gobbledygook): “Impression: Multiple liver lesions concerning for metastatic disease.  Suggest MRI for better evaluation.”

The tender mercy.  The radiologist, trained to look at these things, didn’t just look at her back.  They looked at the complete image and the trained eye noted a dark spot on her liver.  It was out of place and, thanks to the many, many scans Tiffany has had over time, they were able to compare against a scan from earlier this year and sure enough – it was new.  And it was concerning.

Concerning enough to get picked up by her doctors and quickly, or semi-quickly, a liver biopsy was scheduled.  Thanks to covid and a nurse shortage, and surely many other things, it took us two weeks to get in for a biopsy.  September 14^th, 2021.

It took a few days longer than we anticipated.  We kept looking up on Tiffany's Huntsman account to see if we could find out what came of the biopsy.  I was working in my home office when I got a knock at the door.  I could hear Emma sobbing.  We love our Emma, but like me, she has noted she is emotionally constipated at times.  So to hear her sobbing got me concerned real quick.  What happened to her?  Is she OK?  Did mom just have a big fall or did she just get word about something happening to a friend?  I opened the door to a girl with streaming tears, and a look of grief in her eyes.  She looked at me and told me the doctors just called mom and I needed to go talk to her.

I went upstairs and Tiffany was in tears as well.  At that point I knew what was happening but didn't know the details.  The doctor called with the results of the biopsy.  Adenocarcinoma in the liver.

Adenocarcinoma (pronounced like adnocarcinoma).  It’s a type of cancer that develops in the glands that line your organs.  Common forms of adenocarcinoma include breast, stomach, prostate, lung pancreatic, and colorectal cancers.  Shortly after the call the test was made available online and as we read further, it was made generally clear that it was not primary to the liver, meaning it had spread from somewhere else, meaning this was just the beginning of testing and scans. 

Up to this point we have only been seeing Tiffany’s BMT team – the Bone Marrow Transplant team.  After transplant they were/are the ones following her every move.  They were/are her primary physicians.  Well, they, along with a disease specialist.  Due to some of her graft vs. host issues previously discussed, Tiffany fights with Aspergillus – an infection in her lungs due to molds that immune systems like yours and mine fight off with ease.  Tiffany, however, does not fight this off like us and has been fighting this for many years.  Insomuch, that it has eaten away a cavity in her left lung.  Literally a large hole inside her lungs thanks to this mold.

The BMT doctors told us they were sending Tiffany to another Oncologist within the Huntsman family as the BMT specialty doesn't handle these other cancers and therefore needed to send Tiffany to the other side of the clinic, one that delt with these types of cancers.

And so, we went and saw Dr. Orgain.  I guess maybe she’s not a doctor – a physician’s assistant or nurse practitioner, in either case she worked with the doctors on these types of cancers.  Our first appointment with her was on October 1^st.  She came into the exam room and was a breath of fresh air.  She came in and told us, mostly what we had already known with additional details as she can read and understand the so-called doc speak gobbledygook.  She explained that the cancer was indeed in the liver and as noted, was not primary to it.  They can tell that through the histological test that the cancer cells did not start in the liver.  Cancer cells start as one form of tissue.  If it started in the liver, the cancer has tissue that looks like the liver, but the cancer cells divide quickly and start moving to other parts of the body.  If it goes elsewhere, it continues to look like the original cancer – in this example if it spread from the liver to the lungs, when biopsied in the lungs, it would not look like lung tissue.  

(Now, that was a layman’s explanation.   I am sure I am making it sound too easy as apparently it is hard to look at it and determine where it came from, but I digress.)

In Tiffany’s case, this is what is going on.  They can tell it is in the liver but cannot tell where it came from.  And how you treat cancer is determined on where it came from, not where it is.  You don’t fight the cancer as though it came from the liver.  Because the cells aren’t based on the liver, you can’t use drugs that attack the liver as that won’t kill the cancer.  Instead, you have to fight it based on where it came from.  And that brings us to Tiffany’s dilemma. 

It would seem that Tiffany is special.  Well, I knew that – hence why I married her 21 years ago.  Others who get to know that figure that out.  And apparently cancer knows that as well.  Her lymphoma cancer, diagnosed 11 years ago this upcoming month, was a rare form of very few known cases.  This cancer has not been easy to identify.  In 3-5% of all cancers, it comes with a diagnosis called CUP – or Carcinoma of Unknown Primary.  In some special people, they just can’t figure out where it came from.  Not that we aren’t trying.  And so, Tiffany became, or rather, continued to be, a human pin cushion.

Test here, there, and everywhere.  PET Scan, MRI, Genetic test, ultrasounds, blood markers test, Endoscopy, Mammogram, and as I sit up here writing this here post, she is down three flights of stairs getting a colonoscopy.  We half expect a few more tests including a lung biopsy, or at least a bronchoscopy, more blood work, and another endoscopy paired with an ultrasound to see if they can get a better look at her bile ducts and pancreas.  Who knows what else?

In the middle of all these tests, Dr. Orgain (PA) called and said that so far, they could not determine the primary cancer.  As such, she was going to send us to a specialist who handled cancers of an unknown primary.  And on October 22, 2021 – we went in to talk to Dr. Jeffery Russell.  For a few hours he sat with us and went through the findings of the various tests and specifically the PET scan.  He suggests that while he doesn’t know with any high degree of certainty where it started, signs point to the bile ducts that feed the gall bladder, liver, and pancreas.  He showed us the scans and showed where and why he thought that along with blood and other tests.  He also showed of a concern in the lungs, again, suggesting that there may be a desire at some point to biopsy the lung.  He continued running through all the possible ways to treat this cancer and sharing with us a few things that they were hoping to be able to do, but due to the tests coming in negative in some areas suggested that Chemotherapy was really the only thing we could do.  And he doesn’t want to wait.  He wants to treat this as though the cancer started in the bile ducts.  Officially he is calling it pancreatobiliary adenocarcinoma.  But admittedly this is the assumption, until we get better information.  But waiting any longer to try to find out where it started is too risky and suggested we move forward based on this workup and to treat it based on our best understanding while we continue to search for, or confirm, the primary.  If we find it somewhere else, we will move to treating it there.  But since it has a high probability its in the bile ducts, colon or pancreas, they all get treated with similar treatments and is therefore planning on starting that as soon as insurance paperwork goes through and we can move forward with that plan.

We liked this guy.  He was thorough.  He didn’t sugar coat his words, which we didn’t need, but was kind and compassionate.  As he went through the likely treatment, he noted that Tiffany’s life was important – if we needed to take a break for a few days to enjoy family during Thanksgiving or Christmas, we would postpone treatments from time to time.  But also suggested we could only do so sparingly as we do not yet know how aggressive this may be or if the treatment will help.   

He suggested that we do two rounds of treatments and then rescan and retest and hope to see a decrease in the cancer.  A round of treatment for this is to go into the hospital on a weekly basis for a chemotherapy infusion that will last a couple of hours or so.  The chemotherapy will do its work over the course of the week, causing Tiffany to feel ill or fatigued a few days after the treatment, then start to return to normal by the next week when she goes back to the hospital for another infusion of Chemotherapy.  That happens every week for three weeks and then will get a week off.  That is one round.  Tiffany will start with two rounds and see what is happening and determine how to move forward.

We agreed.  It sounded like a sound way forward. 

So began the paperwork for insurance.  Luckily, the hospital takes care of most of that.  And we now have a chemo start date of Thursday, November 4^th, 2021. 

But that was determined last Friday.  Today, Friday October 29, I am sitting in the cafeteria as Tiffany goes through a colonoscopy.  She had a second mammogram yesterday, luckily, we think, finding nothing.  However, every time we don’t find anything, that is good.  But then again, we know there is cancer lurking somewhere.  And sometimes we think we want to get breast cancer or colon cancer.  Why?  Because those are the most well-funded researched cancers and have many treatments and many technological advances in medicine as compared to some of the others.  Not that it makes it easier, just seemingly more options.  But if not there, where might this primary cancer be?  Perhaps in a place that we don’t want.  So, while we hope that they don’t find anything because by miraculous intervention it is gone – and trust me, we pray for that and even hope for that – we also know it is very possible it may be where we don’t want it. 

Well.  There you go.  There is the update of what is going on.  All along the way there are tender mercies we have already seen.  One of them came literally 10 minutes after Tiffany received the call from doctor telling her the results of the biopsy.  A friend called.  Tiffany didn't answer right away, but listened to the voicemail.  In the message, the friend said she felt like she needed to reach out to Tiffany.  It was what Tiffany needed to know that she was not alone in this.  That there was someone who was behind the scenes helping her out. Not just a friend, but a friend who was inspired by a God who knew what Tiffany needed at that moment. 

Another significant tender mercy is that we think we caught this early.  Or at least, earlyish.  An interesting thing:  Tiffany’s back doesn’t hurt like it used to.  We haven’t done anything to help it.  It almost seems like its gone.  Was the pain related to cancer?  We don’t think so.  But we do think that perhaps it started hurting in an effort to help us find out that cancer was spreading through Tiffany.  If her back didn’t hurt, we might have not known until the cancer started to impact her life.  If we waited that long, who knows what we may face.  But we feel we have a fighting chance because it was some off chance that this was found.

We don’t believe in coincidences.  We believe there are reasons things happen.  We believe there is a higher power, God, our Father, who, whether through his self or his numberless angels, earthly or otherwise, help and align things to happen to enable faith and resulting miracles. We see that in our life and are grateful for His continual guidance as we march through this mortal life seeking a life of improving and not one of ease. 

Though perhaps, like the Savior before us we plead… please let this cup pass by us…. Nevertheless, thy will be done.

Well – I just got the call that Tiffany is done with her colonoscopy.  Hope the above helps to share what is going on with our sweet and wonderful Tiffany.  She is in good spirits and looks forward to the good that will come amidst the craze.  Please add Tiffany to your prayers.  We know they work and would appreciate any her way.   

Cheers,

Fred aka Nathan