Cancer Cannot Silence Courage

     It's hard to believe that it's already a full week into December, Christmas will be here before we know it!  Christmas is one of our favorite holiday's and I was worried that with everything going this one would be hard.   However, even though we've been busy we've both been able to take time to relax and recover at night and squeeze in some Christmas activities.   With the help of John our house is nicely decorated.  For the first time in several years, we have a Christmas tree up, lights outside and festive decorations inside.  Seeing our stocking holders spelling "Joy" on the mantle has been a good reminder for me to to seek it.  It's been fairly easy, and we've been very touched by the thoughtfulness of others as gifts have been arriving secretly on our doorstep.   We've both been very touched by the support of others this month and it's helped bring joy to our lives. 

     The results of Chris's biopsy last week to check for Amlyoidosis came back.   From my research I had learned these amyloid proteins can build up in different organs (heart, kidney's, liver, intestines, nervous system) causing many complications.  A positive results could also cause problems with doing a bone marrow transplant, exclude him from clinical trials and shorten his life expectancy.  The worry about his results was lifted yesterday when we found out his was negative.  Approximately 10-15% of myeloma patients will have symptoms of amlyoidosis during the course of their disease, so it's something we may have to battle in the future, but for now we are grateful for the negative result.

       This week was the second week of only 2 dialysis treatments.   The dialysis center last week was concerned about his creatinine levels being higher and wanted to change back to 3 times a week, but we insisted that they "compare apples to apples" and use two tests of being off dialysis.   This week his creatinine was lower than two weeks ago and headed again in the right direction and over a point lower than 4.27 it was when he was originally caught in October.  It's a good sign that his kidney's may have been spared by starting the chemo when we did. 

     The good news of both tests results is a huge blessing because  Chemo is really starting to take it's toll.   We were told originally that he wouldn't lose his hair, but it's been falling out pretty consistently the past week or so.   Apparently a side effect because he is on such a high dose.  The chemo is also making him weak and tired, but he often has a hard time sleeping.  Neuropathy is also a side effect and he's starting to have numbness in his fingers.  It was one of the side affects were were warned about, and our doctor isn't too concerned.  It's hard for me to see him suffer, and he strives so hard to put a smile on his face, but some days the pain and anguish can't be hidden.   But sometimes I'm able to offer relief with the gentle touch of a hot (or cold) rag and am rewarded with a smile that melts my heart. 

      Today while our good friend Logan was bringing him home from dialysis we received texts from his family in Washington and Montana which was so much more than just a picture, but instead the immense feeling of love and support.   It's almost as if they were here giving us a hug and it brought both of us to tears.   They have made shirts that say:

Team Chris

Our Iron Man doesn't fight alone...

Cancer Cannot Silence Courage

Week Seven: Weakness and Strengths

As the weather turns cold and snowy, I am reminded that with Myeloma, I have this tube in my wind pipe. The humid cold air causes condensation and build up with in the trach and causes me to cough, a lot. I have to remind myself that I am still new to this as well as dealing with all the other battles going on. I bring this up, because I find myself unable to sleep very much. It is not uncommon to have a 3 or 4 hour night, and then nap a couple times in between visits, appointments, and time with friends and family.

One night, a couple nights ago, I was up at 4 or so, and was surfing the TV, and came across a Hallmark Christmas type movie. You know the ones, I think they said on the radio once that this year there are going to be like 40 of them! Anyways, as I eye rolled, I found myself putting down the remote. My thought was, maybe I will be bored out of my mind and fall asleep. Now I did doze on and  off but as an expert TV watcher, I was still able to guess/follow the predictable story. Anyways! There was one line in there, and I am paraphrasing, but it said something like this about prayer:

God hears all prayers, but he earmarks the honest ones. 

I frowned at the statement. Aren't all prayers honest? But then I started thinking, when you go through the motions, are you being honest? Do you really want to "bless the hands that prepared the food"? Of course, right? But what does that mean? I am extremely guilty of "going through the motions" prayers. Some times it is just too painful or shameful to ask for what I need. I found that the sincere and honest prayers, were ones I kept to myself, but if I ever prayed in front of others, I said the scripted one I grew up with. Was I embarrassed?  My goal is to have as many honest prayers as I can. I feel I may have wasted many prayerful opportunities.

A couple things have happened these last couple weeks. My kidneys are working great, so, on a trial basis, they dropped me down to two dialysis trips a week. Mondays and Fridays. What a blessing this is! In turn, since my chemotherapy days are Wednesday, they moved my infusion appointments out by the center by my house! My commute and hospital time on Wednesdays dropped from a 7 AM - 6 PM ordeal with an hour both ways in travel to a 3 minute ride and a 3 hour visit. So much nicer. Although this week, because I haven't had a break yet from the chemo, I have become anemic. And this week, I have to have a blood transfusion. So that will add a couple hours to the week.

I brought up prayer because it has become my security blanket. Each week of chemotherapy is getting harder on me. I can feel it. It is becoming harder to keep my smile on my face. I feel myself getting weaker, and for someone who has always been strong, physically, mentally and spiritually, it is becoming harder and harder to be. But I hold to prayer. And I have seen it work, in the few short weeks. I am realizing how important every interaction I have with people is becoming. I want to make the most of every visit. I have always had a fear of appearing weak, and this whole hurricane of health issues is making it really hard to be strong.

Anyways, with no break in chemotherapy for another 4 to 5 months, I find myself pondering and praying more than ever. Thank you all for your prayers. I know Michelle and I are astounded at how we have made it this far, and we worry about the future. But having God and Family and Friends to lean on is becoming a highlight in our nightly talks before bed.

Thank you.

Tender Mercies

     The weekend before Chris ended up in the hospital happened to be LDS Conference weekend.   I had been prompted to pack for a hospital stay, and so listened while I packed.   There were a few talks that I really enjoyed and wanted to read again.   One talk was by Elder Ronald A Rasband, called "Divine Design"  about how God is involved in the small and large milestones in our life.  Little did I know that day how much our lives would change, but in all our challenges, we can see the Lord's hand.

       We've been home from the hospital about a month now, and we're settling into more of a routine.   The good news this week is that they decided to try changing him from 3 days a week of dialysis to 2.   His kidney's seem to be doing better so this will be a good test.    They dropped his Wednesday session, and only having Chemo on Wednesday this week was a nice change.   Since we don't have to go up to the main UoU for dialysis, they were able to arrange to have his chemo done here in Daybreak.   We're so grateful that so far we haven't had to battle snow storms to make it to treatments, and are sure the warmer weather won't hold out much longer so having chemo close these next few months will be a huge blessing.   

      Tuesday he also had another biopsy, this one called a fat pad biopsy.  We were a bit concerned that it was more major than his other biopsies because it was scheduled in the surgery area of Huntsman.  Apparently a miscommunication.   Instead of the message being passed along that he wanted to avoid anesthesia, they were told that he was insistent that he wanted to be put under.   Luckily we were able to talk to the doctor before they even put the IV in and she said it could be done in the room.   The biopsy is to check for a condition called Amlyoidosis.  From my research Amlyoidosis sounds very similar to myeloma and even is often treated the same.   I'm not quite sure how it's different or what being positive would mean, so for now we'll just have to wait for the results to come back and to hear from Dr Sborov.  

    As we've adapted to being at home, we've been very mindful of the small miracles of people following a prompting to bless our lives.   The timing many times has been too perfect for it to be just a random chance. 





     One particularly tough day, I left for work in tears.  I can't remember why, just a tough morning.   When I got to work our backroom was packed with boxes, a pretty common occurrence this time of year but still very overwhelming sometimes.   The first box I opened made me smile,    Instead of being filled with shipment to work on, instead a treat.   The people involved in making such a package arrive could not have timed it better.   It turned my day around.  


     For Thanksgiving last week, we decided to have a nice quiet meal at home.   Being the day after chemo and dialysis, Thursday's are usually one of the toughest day's of the week for Chris.   It just so happened that some good family friends came up from St George and stopped by in the afternoon for a visit. 
     Over the summer they were so kind and generous and did a fundraiser with LuLaRoe to help us with our medical bills.   During an open house, their sweet daughter, Ellsie came up with idea of doing a lemonade stand to help raise money.  She sat outside in the hot St. George sun.  This picture just melts my heart, look at how hot she was and she never complained!   What a sweetheart!  We've been wanting to make it to St. George to be able to accept her hard earned money in person, but haven't been able too.   We are so grateful that they were able to visit.  The jar now rests on our mantle as a daily reminder not only of the Tichenor's generosity but the love and support of all of our family and friends. 

    So many times this month, we've been blessed by tender mercies.  Friends, family, ward members or co-workers who include us in their prayers and follow the promptings to reach out have made our lives easier, brought smiles to our faces, tears to our eyes and replaced sorrow and heartache with moments of joy.  We are grateful for all of you. 

Week Five: Challenge Accepted!

So, my beautiful bride wrote a blog post that was probably hard to read for some of you. The prognosis for my cancer at 3-5 year average, was, admittedly, very hard to swallow. But there are a lot of circumstances that can extend that, and obviously, shorten it as well. However, if you know me at all, that is just another challenge I get to fight and conquer.

 

People keep saying that 43 years old is young. In the grand scheme of things, I absolutely agree! However, don't think for one moment that I haven't lived a great life! 

First and foremost. I met and married Michelle. There are not enough words to describe the type of awe that Michelle brings to me on a daily basis. Besides being straight up beautiful, she has a smile that can melt ice bergs. She is always thinking of others. I cannot tell you how many of our conversations start with, "So, (insert person's name), what should we do for them?".  Always wanting to make sure your comfort level is better than her own. Working too hard and loving it! She loves her job! Even if she has a bad day, and I say something about the industry or whatever, she defends it and finds the good in it.  Oh, and her chocolate chip cookie.. well, there is none that can beat it. None. Trust me, I know.

I have had some really great experiences in my life as well! Did you know I got to spend a night in the Penthouse suite in the Bellagio with my bride? It was awesome. Or go to a Kansas City Chiefs Playoff game where I got to hear how loud Arrowhead really can get? 140 decibels is no joke! It's loud! You can yell at the person next to you and they cannot hear a word! I have got to hear some of the greatest live music, heard cannons fire in the canyons of the Wasatch. Been in a hurricane. Survived a tornado outbreak. Seen some wicked lightning storms. Watched some great movies (and some bad ones!). Read some amazing stories in books, on screens, and listened to them told to me by some of my very best of friends. I have been a story teller and man, do I LOVE telling stories!

My point in all of this is that while it sucks to be in the rare of the rare disease category, it is not going to stop what God has in store for me. Does that make sense? I truly believe nothing is being cut short. There are very hard days that have been experienced, and I guarantee that I have a pretty rough road ahead of me, but it's okay! I truly believe I have been prepared for this. I have to believe that. It is where I get my courage to continue. Think about this. You are here on this beautiful marble we call Earth to experience life. Why would you be sent here to fail?

So, as Michelle and I fight this fight and hear a lot of scary vocabulary, we are more than willing to share with you it all. It is very therapeutic for me, and I am thinking it is for her as well. If for any reason you do not want to follow along, I am totally fine with that.

However, when you see me. And think about all that is happening and going on with me and the time that I have left. Please do not be sad. Come on over, give me a hug. Or ask how I am doing (just know it is not always going to be a positive answer.. ), or come up and put your hand up for a high five and say, "Hey! Great to see you!"

Because I promise you this, it will be so fantastic to see YOU!

This is Life

     This week was a week of ups and downs, highs and lows, despair and hope, tears and smiles.  No one ever really knows how long their life will be, and realizing that there is a pretty good chance that I will outlive Chris has been weighing heavily on my heart this week.   I feel far too young to be a widow, and so grateful that we are married for eternity.  

  We talked with Dr Sborov on Monday morning for about an hour and again on Wednesday while doing chemo.   We were given more information about his test results.  The sternum biopsy on Halloween, provided enough to run testing, however wasn't an ideal sample.   The bone marrow was hypercellular (meaning more cells than normal) and they were also crushed.  However with the pathologists conferring with Dr Sborov and combing the results of the previous testing that has been done they collectively are in agreement with the diagnosis.   He said he would characterize Chris as having Oligosecretory Lamda Light Chain Multiple Myeloma.   The Oligosecretory Lamda Light means his body is only producing part of the immunoglobulin called the light chain.   

     There are two different systems for staging multiple myeloma and both have three stages.   His staging is also a bit limited because of the quality of the bone marrow biopsies.  In ISS system, they look at the Beta2 Microglobulin.  Because of the kidney failure, his is high and places him in stage 3.  In the RISS system, it relies on the ISS system but also incorporates LDH (an enzyme) levels and cytogenetics (DNA).  His cytogenetics are not high risk, but his LDH was high risk because it was elevated.  He is also in stage 3 in the ISS system.  The higher stage means they need to be more aggressive to give him the best chance.  

     As with any disease, catching it in the earlier stages is better, but with multiple myeloma most people (approx 95%)  are not diagnosed until they are in an advanced stage.  One of the key things that makes him such high risk is his kidney failure.  The average life expectancy for someone in Stage 3 is 3-5 years.  It is an average so some live longer and some live less.   Many advances have come in the recent years, and Dr Sborov said that there are a significant number of new agents that will available in the near future that have a very good chance of improving the odds.    While the agents he is referring to are medications, thinking of his chemo being filled with secret agents.   I also think watching the movie Osmosis Jones needs to be watched again in our near future.       

  We also asked more about what the short term plan is.   His chemo (CyBorD) is done in 4 week cycles, and while his started a bit un-traditionally because of inconclusive test results, he is now on more of a regular schedule and Wednesday was the end of his first cycle.  So far he is responding to the chemo, and the plan is for him to continue doing cycles of chemo, one right after the other likely for at least 6 months.  

     He is not a candidate at this point in time for a Bone Marrow/Stem Cell Transplant.  If he continues to improve and respond to the chemo, then a Bone Marrow Transplant will be an option and the next stepping stone.   Being eligible is a sign that things are getting better, not worse.   Unlike what we were picturing, the procedure itself it isn't painful.  They would give him a shot for four days which would tell his body to produce more of a specific stem cell.   They would then harvest hopefully 15-20 million of the cells and then freeze them.   They would then give him a different chemo to kill the rest of the defective cells.  After which they would replace them with the filtered out good cells, via IV.   He would be in the hospital for at least two weeks and followed carefully for another couple weeks.  It would be tough and make him pretty weak, but he would hopefully start feeling better after 2-3 months.   The bone marrow transplant itself wouldn't be painful, but the side effects from the chemo could be (mouth sores and GI issues).   

     Wanting to do everything we can to beat this things, from researching I have found there are things that can improve the life expectancy and it's been comforting to read that many of them are already being taken care of.     

Quality and Skill of Care
Myltiple Myeloma is rare, many hematologist/oncologist may not see one patient in a year.  An experienced specialist is able to stay on top of the current treatment/medication options and would have access to drugs that other oncologists would not.   IF those fail, they are also aware of clinical trials.  We are so grateful that we live so close to a top notched facility and in the skilled care of Dr Sborov.   Not only is he very knowledgeable, but his compassion and concern is unmatched.   

Health Insurance
This goes without saying, but having access to health care is vital.   Chem is expensive!   His current chemo drugs cost over $10,000 a week.   Those without healthy insurance rarely live longer than a year.   While going to work and leaving Chris is very hard, having healthy insurance will undoubtedly give him the best chance.    Patients rarely die from multiple myeloma, but instead from complications such as kidney failure, infections or anemia.   Getting good supportive care is also vital.   The team a Kolff Dialysis is doing an amazing job at treating his kidney failure, and Dr Sborov texted this week to tell us the good news that his creatinine levels are down to 4.21 a good trend in the right directions that is giving us hope.



Age
The average age for being diagnosed with multiple myeloma is 70.  At 43 Chris is very young to have the disease, but being young also gives him a better chance to survive longer.  Chris is determined to do everything he can, even if it's tough to fight.    When texting with Dr Sborov this week Chris said he has too much to live for, he is determined to beat the odds.      As one can imagine, hearing 3-5 years was hard to hear. 

     While this week was hard, it was also filled with many blessings.  

On Thursday evening Chris and I were discussing the upcoming week and month and trying to make plans for how to best use our time and how to fit in all of that we needed, let alone anything with the holiday's.  After our discussion I fell asleep and Chris later mentioned that he spent much of the night praying that somehow things would get better.  This quote on time I feel perfectly described how we felt.       

Friday was a busy day.   The very rainy/snowy weather made getting to dialysis an adventure, but we were grateful that we made it safely.  Our good friend Logan,  had come the previous day to my work and took care of a replacing some fluid in my car.   He also fixed the radio, something I've been desperately missing on the drives up to the UofU.   I was able to listen to music on my way home.  A few of my favorite Christmas songs came on the radio, including "Mary, Did You Know?".   Tears streamed down my face as thought of "Baby boy who could calm a storm with his hand".  The storm of emotions that comes with a cancer diagnosis is a pretty brutal storm.  I dried my tears and went to work and jumped right in to all of the stuff that needed to be done, a good distraction.  One of my bosses was there and after giving him the latest update we talked for a bit and I was again in tears at the support, concern and compassion of the amazing people and company I work for.  I felt some heavy burdens being lifted off my shoulders.

     Friday evening the Sister Missionaries who had stopped by on Sunday came back for a visit and brought an uplifting message about trials.   Today I also was so grateful to have a real day off.   Sleeping in was restorative, and accomplishing a few things was great.   My brother also came to visit with his wife and sweet baby Tess.   Baby giggles and snuggles are very therapeutic. 

      As like everyone in this coming week, we ponder what we are grateful, I want to let each of you reading how much we appreciate you.   I'm not able to write about all the little miracles, blessings and prayers that are helping us survive.   The messages of love and encouragement often come at a time when we most need them.

     May your coming week be filled with blessings, good company and delicious food.







   

No News

      We've been home from the long stay at the hospital almost two weeks and we're working to settle into a routine with dialysis on Mon, Wed and Fri, and chemo on Wednesday. 
     Yesterday was the first day chemo and dialysis were able to be scheduled on the same day.   It made for a long day.  Because of his chemo, he is in isolation at dialysis.   The room yesterday was blazing hot and made dialysis more draining than normal on both of us.   Hopefully it will be fixed tomorrow.
      Chemo started out pretty normal, with a Velcade shot in his stomach and an IV drip of cyclophosphamide.  As he was almost done with the IV his nurse noticed that his shirt was wet, and upon further investigation it was decided that the Velcade shot was leaking back out.   The nurses estimated, it was likely all of the shot.  They contacted the pharmacy and his doctor and Dr Sborov made the decision not to re-dose since they couldn't accurately know what leaked.  However, they had to treat the leak as a "chemo" spill.   They all were gowned up and everything they cleaned with was put in biohazard bags, they took his shirt and bagged it up and gave us instructions of how to wash it at home and sent him home in gown. 
      We thought we would be hearing from Dr Sborov yesterday the results of the bone marrow biopsy from Halloween, but he did not come visit.  His nurse stopped by during chemo we were able to ask her for more info.  Chemo is divided in 4 week "cycles".   This was week 3 of his 1st cycle.   After each cycle they will do blood tests, and we'll meet with Dr Sborov to determine the next step.   She however is already working on scheduling things for his second cycle which will start right after this one.   She also let us know that they scheduled the Myeloma MRI, a full body scan to check for masses and check his bones for lesions.  They are also going do another type of MRI of his brain to see if they can get more information about the problem with his eye and check on his brain tumor.  Both are scheduled for November 29th.   He'll need immediate dialysis after the MRI to remove any contrast and then will do chemo. 
     Not hearing the results when we thought we would was discouraging, but we know they will come eventually.   The results are a two edged sword.  Knowing the specific type of multiple myeloma, the treatment plan and the prognosis will help us know and make plans.   Not knowing however allows us time to just adjust.   The rest of our life changed drastically last month and I think we both are still trying to process all that that means.
      Today while I went to work, Chris was busy with health care visitors.   He met with an occupational, physical, and respiratory therapist as well as his home nurse. 

Week 3 - Miracles

In three weeks of dealing with Multiple Myeloma, I have had the experience to write many novels.  Just the bone marrow biopsies could fuel a movie franchise by itself. However, one thing I have noticed is in the midst of the pain, blood, sorrow, sadness, tears, etc. is the presence of inspiration.

I call them miracles.

Example 1: Halloween Eve! I had been released a day or two before and had to go back for my first appointment with my Doctor at 11AM to give me the results of my leg biopsy. Turns out, it wasn't enough and they are going to go through with the sternum biopsy. Which I said they could knock me out for. He agreed (...but I was awake for anyways..). They ran blood labs and were uncomfortable with a level of something on my kidneys so they scheduled me for dialysis immediately. Of course, it wasn't until 6 PM that night that I started. Missing out of pumpkin carving and other festivities. I was bummed.

About 9:15PM that night, Michelle just left for a walk around while I dozed finishing up dialysis. Just as the door closed, my nurse assistant came in and said there was an active shooter and that we are now on lock down. I immediately woke up and told him to grab Michelle, but when he went to get her, she was gone. I looked over and her phone was sitting where she was. Panic. There is a word I missed. About 20 minutes went by before Michelle showed back up and we were looking out our window to the spot lights scanning the hillside right out side the window. I calmly asked Michelle to close the shades. Around 1AM they told us we could leave, but at our own discretion. I hated staying in a hospital so much I wanted to leave. Just too late though.

We ended up staying at the Huntsman for the night. We had no supplies, and because of my need for a vent, I had to be put back up in ICU. We got the same room. We laughed. And promptly fell asleep.

Example 1: Miracles
- When I checked in at the clinic, I received a cool knitted cap for winter. Why is this a Miracle? I was just thinking to myself when we were headed in that it is going to be cold soon, and I will need a new hat, but I hate shopping for them.

- Jeff was my dialysis tech and Monday Night Football was on. Why is this a Miracle? Jeff is by far my favorite tech and he sat and watched my Chiefs beat the Broncos with me, and cheering for the Chiefs. It was a great distraction to what was going on and what I had to look forward to the next day.

- Michelle was safe. Why is this a Miracle? (You have to ask?) From her point of view, she had no idea what was going on. The one time she doesn't take her phone and she almost walked outside. She decided against it and came back to the room to me on near freak out mode. Whew.

- Staying in the same room, on the same floor with the same nurses that I was used to. Why is this a Miracle? Comfort. I was able to fall quickly asleep. My vent settings were in their records so it was easy for their Respiratory Tech to set up a vent for me. I had slept there a while, so I was used to it. And I was going to need a good rest for the procedure in the morning.

All miracles, if you look for them.

Endurance

     Started this morning with an early drive to dialysis.   After a bit of a rocky start with where he was going to end up, he finally got started.   During his dialysis, Dr Sborov came down and visited with us for quote some time.   The lab results still haven't come back yet but he explained better the ones from yesterday.   They don't 100% confirm it, but it bumped their confidence fro
m 90% to 98% and he is confident they are doing the right thing.   We asked a lot of questions and passed along things we thought might be helpful and worked hard to all get on the same page.   They are still trying to work out the kinks, which primarily are dialysis.   A new kidney doctor that was working today, Dr Bjordhal was able to offer some assistance.  He manages the clinic in West Valley and was trying to get him on out there, but due to staffing issues they don't have room.   However, hopefully they think they might be closer to settling him on the outpatient center at the main UofU starting on Monday. 
   
        After getting Chris situated, I went and grabbed breakfast.   When I came back there was a sweet dialysis nurse named Anissa who was talking with Chris.   She was encouraging him and giving him advice.   Her husband had been diagnosed with kidney failure 18 years ago and she though she was going to lose him.  She had handed him the token to the right, a great reminder that relaxing can help him to heal.   When I came to join the conversation she reminded me to take care of myself, which I am trying very hard to do.   She also gave me a great hug.   She talked about how we can either "Go through things, or grow through things".   Some days are harder than others, but we both try each day to look for the good and learn from this experience.   It's hard sometimes to think of what we are supposed to be learning or strengthening besides patience, but came across the quote below that was what I needed to hear.   Building endurance for the long road ahead is part of the reasons we've been through so much before this diagnosis. 

     After dialysis, we thought we would be taking his chemo today at home in pill form.   However, insurance will only pay for it if it is an IV drug, which I'm sure has to be done by a nur
se at an infusion center.  We could have paid an arm and a leg for the pills, but chose to instead stay at Huntsman for a few more hours and get the IV.   Took a while to get it up from the pharmacy and get it started.  The delay worked out and his brother Fred to arrive for another visit.   He's been trying to get here since his last visit, and it will be a great boost to Chris's spirit to have him here, and huge help to me as well.   We also think that he'll be OK without dialysis until Monday, so three days without any procedures planned will be a great opportunity for him to work on relaxing. 

     While Chris was trying to relax during dialysis I happened to catch this picture.   It was too perfect not to share as I feel it perfectly fits.  So much going on, so many battle scars but taking a moment for some silent contemplation. 

3 Crazy Days

       The past three days have been crazy, and I'm too tired to write much of anything but the facts. 

       Because of the shooting up at the UofU on Monday, we ended up stuck in lockdown at Huntsman.   After finishing dialysis a bit after 10:00, they moved him back up to ICU for the night so that he could be on the ventilator, ironically to the same exact room we had left on Saturday.  They had at one point told us they might be able to let us leave, but it would be at our own risk and I wasn't sure how I would even go about getting my car out of valet and we had to be back the next morning.  It was scary enough to be there hearing the helicopter overhead searching and the news showing what was going on not very far away.   Both rooms faced out towards the hillside where the shooter was suspected to be, so it was a terrifying night, but at least we felt safer inside. 

     The next morning they released him from his stay and was then checked in as an outpatient at Interventional Radiology.   They did the bone marrow biopsy in his sternum, and were able to get several samples.   Last time they wanted 10cc's, and Chris thinks this time they got about 40.  He was mostly awake for the procedure, but the doctor doing it was one of the best in the country and did so without too much pain.   Dr Sborov doesn't want him to be in pain, so encouraged him to make sure to stay on top of taking his meds.  They did it in a room with just ultrasound, and from the ultrasound they realized that there is a mass on his sternum which they took samples of.  It's likely what has been causing the numbness in his chest, that showed up back in May. 

      This morning there was enough preliminary results back that Dr Sborov felt more confident in doing chemo, so this afternoon he got the start of his second round.   He was able to work it out for him to do it at Huntsman here in Daybreak, which is hopefully where he'll do it most frequently.
     A phone call from Dr Sborov.   He said that the lab techs are working super hard, but we probably won't get results back until next week.   We are lucky that the preliminary results came back as quick as they did.   He warned us that there is a possibility that the samples from his sternu
m might not be able to give the results we hoped but we won't know until next week.  We think perhaps the mass in front might have compromised the samples.   He's working on getting a full body MRI to find out more information about the mass, and hopefully can also check up on his brain tumor and carotid cavernous fistula. 

      Tomorrow he has to be at Huntsman at 7 AM for dialysis and then his other dose of chemo but for tonight he's dozing comfortably in his new chair.   My sweet Grandpa offered to contribute whatever we needed to get a chair that would fit his needs, and potentially future needs.   I ordered it the end of last week and it arrived today, and it's perfect.  A good friend helped us put it together and he's all relaxed for the night.  A very sincere and tear filled thank-you to my Grandpa for making this miracle happen.   Thank-you also to those who sent contributions before my Grandpa's offer.  He used them to order a cane to help him get around easier and we know there will be more needs that come up in the near future. 

Inconclusive

      Today we thought would be the day that we found out more about his specific type of multiple myeloma and the plan to treat it.   The bone marrow biopsy from last week was inconclusive and they need to try again.   🙁  To ensure that they can get a good sample, they have him scheduled for a bone marrow biopsy, most likely in his sternum, tomorrow morning.   (Can you say ouch!?!).  They don't feel comfortable proceeding with treatment without being certain, so more pain is really the only option. 

     Chris mentioned in his blog last week that he didn't want to hear "the C word", but for me I think the word that hit like a ton of bricks was coming up to the "oncology" floor.   When we first met Dr Sobrov I knew that having Huntsman on his jacket could only mean one thing, but found it interesting that Hematology was listed on his jacket but it didn't say oncologist.  During his appointment with the neuro ophthalmologist almost a month ago, I distinctly remember my brain shutting down as one after another they kept talking about "scary words".   Words  like "carotid cavernous fistula" and "Interventional radiology".   Those words are now something spoken of regularly, and even more scary words are part of our regular vocabulary.   Hearing that they were fairly certain he had cancer was hard, but now a week and a half later still hearing they still aren't sure is a unique kind of pain. 
     
     For today, we spent most of the day at Huntsman.   While they worked to arrange dialysis, we sat for about four hours in the waiting room for clinic 2c, the clinic for bone marrow transplant and multiple myeloma patients.   Looking around at the average age of patients, it's hard not to notice how out of place we are.   Most of the patients are easily many decades older than us.  It reminded me of one of our favorite Christmas movies, Elf.  No one deserves to have cancer at any age, but being here when we are both still so young is... well, there are no words.

      However, we are so grateful that we have ended up in the hands of Dr Sborov.   He stopped by and checked on Chris while they were drawing blood, then spoke with us for almost an hour about where things stand.  He said that when he got back in town on Saturday and found out about the bone marrow results he was so discouraged.  While we waited for almost four hours for them to figure out how to get him dialysis today, he came out several times to update us.   He's amazing at keeping us in the loop of what is happening, and also keeping us informed of his contingency plans.  If he finds out tomorrow that they bone marrow biopsy didn't got well and isn't going to yield the needed results, he said we'll have another talk about what to do.  He explained it that we are walking a fine line... trying to wait for answers, start treatment without certainty and give his kidneys the best chance of recovery.  He never makes any question or concern seem small.   When he noticed out of the corner of his eye, while talking with Chris, that tears were forming in my eyes, he made sure I had a tissue.  He shares our frustrations at how bumpy the road has been and is doing everything he can to improve things.  He see's how making the wrong decision at this point in his life can have a huge impact on the rest of his life.  When he came to to the room to update us on the status of dialysis he ended the conversation with "We are a work in progress"... so glad to finally have a very smart ally on our side.