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      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.

There's No Place Like Home

     It was a very long day, but we are both so very happy to finally be back at home.   It took a lot of insisting that keeping him in the ICU because they still can't figure out how to set up outpatient dialysis was not in his best interest.
      We meet back on Monday with Dr Sborov where we are hoping the bone marrow biopsy results will be back and we'll learn more about his particular case and what his plan of treatment is. 
      There's still a lot to do, but for now the most important thing is sleep.
     

Psych!

     This morning it sounded like Chris would likely be going home today.   Our previous release day's from hospitals have never gone all that smoothly, so we didn't get our hopes up.  We asked multiple times to talk to the case manager to find out more information about when it might happen, but they would never come in to visit us.  His primary team (BMT) said that they didn't have any concerns with releasing him, the hang up was the hematology team trying to get dialysis figured out. 
       In the afternoon someone came in and told us that there was no one in the valley who could do dialysis outpatient for someone with a trach and that he would need to be transferred to a long term care facility.   It was heartbreaking and frustrating that it was the first that had ever come up.   We were sure that there must be another way.   Dialysis will likely be 3-4 days a week for 4 hours at a day, that spending the rest of the week in a care facility seemed unnecessary.   We asked to talk to the kidney team to see why this was only now being discovered.
      Since it was obvious he wouldn't be leaving tonight, I went to work for the evening.   Chris was able to push for answers and find out that we were given wrong information and that there is a place in Sandy that will be able to do his dialysis.  They just want to make sure that Chris feels like that will work, and so I have to go tomorrow to check it out and give the OK.  I can't even imagine how that got mixed up, but it was a cruel miscommunication.
      So here we are still "living at the hospital" as good friend so adequately put it.  Hoping that tomorrow he may be released and be back at home.   The weekends at a hospital are always a little bit slower, so we won't hold our breath.
      Roxann showed up for a visit shortly after I left, and Chris had a nice evening.   His nurse from last night is here again tonight and the pain meds are helping with his leg so hopefully he'll be able to sleep.

Sore Leg, Pain Meds and Visitors... oh my!

Multiple Myeloma

Chris posted a little about his diagnosis in his post earlier this week, but I had started collecting information and tonight seemed like a good time to add it to my blog.   We'll probably have more information about his specifics sometime next week.  Once we are released from the hospital I still plan to update the blog, but it likely won't be a daily thing like it has been.   There is a subscribe option in the upper right hand corner if you want to know by e-mail when one of us posts.

Multiple Myeloma is a type of blood cancer.  There are two other main types of blood cancer, leukemia and lymphoma.   Of these three it is the 2nd most common.  It occurs in the plasma cells inside the bone marrow.  Plasma cells are white blood cells that produce disease and infection fighting antibodies in your body. Myeloma cells prevent the normal production of antibodies, leaving your body's immune system weakened and susceptible to infection.  It can cause bone lesions which destroy and weaken the bones.  

It is not considered curable, but often is something that can be managed as a chronic disease.

It is treated primarily by a hematologist (blood doctor), but usually also involves other specialists.

Most people diagnosed are older than 65.

Men are more likely to develop it than women.

The odds of getting it are approx .67%

Tom Brokaw was diagnosed with Multiple Myeloma in 2013 and has written an autobiography called "A Lucky Life Interrupted"

                                     Typical Day

     Today ended up being a pretty average hospital day.   The pain from his bone marrow biopsy made it hard for him to sleep last night, but they did their best to treat the pain.   The pain meds would work really well at first but quickly wear off.
   
     This morning started with another round if dialysis, this time with one of the techs that he really likes, Ryan.   Ryan is young, but very experienced.   His father does dialysis at home and he has been helping his dad since he was 7.   His mom is also a tech in the dialysis department. 

     During dialysis had a visit from the nephrology (kidney) team.   They are happy with how is he responding to dialysis and were going to work today to set him up on dialysis outpatient.  Outpatient is usually only 3 days a week, 4 hours at a time but they can increase it to four if they need to.  Then shortly after had a visit from the BMT (Bone Marrow Transplant) team.   They are currently his primary team simply because of balancing patient load in the hospital.   They gave us the good news that they think he is stable enough and can probably go home soon.  The mentioned tomorrow as a possibility, but we've learned that hospitals are usually horrible at predicting so we'll just have to see how things pan out.  It seems like ages ago that we arrived and so much has changed.   Getting back to the comforts of home can't happen soon enough.

      Today he had several visitors.   First a surprise visit from his uncle Adelbert.    Then this evening a visit from my uncle Alan and aunt Teresa.   While they were visiting we also had a visit from some members of our church.  It was the end of two long, tough and painful days and the visitors were a great distraction.   The nurses were also finally able to work with the doctors to come up with a better pain solution, and our nurse from Monday (Brittney) is here again tonight and promising to make sure he gets them on schedule so he can get some good sleep. 

  

Finally...

      They have been trying to get Chris scheduled for a bone marrow biopsy since mid week last week.  Yesterday we thought it was a for sure thing as it was listed with a scheduled time in his online UofU medical account.   They called and told us they would be up in 20 minutes, only to then have to turn around and tell us that there was a problem with the orders and there wasn't anyone that could do it.  After things fell apart yesterday, today they told us it would happen between 10 and 11.  The bone marrow biopsy finally happened in the mid-afternoon. 

     When Dr Sobrov who has been off for the past few days came in he asked is how it the biopsy had gone and was also frustrated that it hadn't happened.  He's planning his treatment off the results, so the delay means more agonizing wait time to know what the next step will be.  The doctor filling in for Dr Sobrov didn't seem to care about our frustrations with it being delayed again, so it was a huge relief for both of us to see Dr Sobrov in the doorway. 

      What was supposed to be a 20 minute procedure took 2 hours.   Chris's bones are so tough that it was difficult for them to drill through, the tech doing the drilling said it was the strongest shin he's ever drilled into.  Chris said they broke two drill bits trying to get through the bone.   Trying to avoid any more anesthesia this year if possible, he did the procedure awake with only local numbing and some IV pain meds.  They wanted to get 10 cc's of bone marrow but even with trying to scrape around (ouch!), they were only able to get 4 cc's.   Hopefully that will be enough to get the results that they need, doing another one anytime in the near future is not in his wish list.   He said it was the most painful thing he has ever done in his life.

       Even despite the amount of pain he is in, he still is so kind and patient with the nurses.   When I got back from working a partial day at work, he made sure to put a smile on his face.   When the nurses and aids were helping him get into bed from the couch.  He would sincerely tell them "thank-you".  The look on his face when they perfectly positioned his pillow was priceless! 

       Because of shift change, it took a while for them to get in contact with the doctors to be able to order pain meds, but they finally brought them in and he's all tucked in and peacefully sleeping.   Today as I drove to and from work I had some time to think, I realized how much has changed so drastically in our life in the past week and a half.   A week ago on Monday we were terrified about starting dialysis, and here we are at a new hospital and already started chemo.   The chemo has made his entire body ache and today's procedure added to that pain.  May my gentle courageous lion be comforted when he does his best tomorrow, even if the best he can do is get out of bed.

Back to Back

      Last night when I got back from work, Chris was on dialysis.  A little while after finishing dialysis they started the final part of the CyBorD regimine, Cyclophosphamide.   It was given as an IV drip over an hour.  Seeing the precautions that the nurses had to take just to inject the medication was a bit terrifying. There's now another special large garbage can in our room clearly marked with a sticker similar to the right.  As well as a sign on the door reminding them to take the necessary extra precautions. 

     This morning in order to have it done in time for the bone marrow biopsy, they did dialysis most of the morning.   This one for four hours and removing about 3 liters of fluid.  The two rounds of dialysis almost back to back left him tired so he slept through a good portion of both of them.  One of the doctors yesterday said that there is typically about a 50% chance of restoring kidney function.   Not the best odds, but not the worst either I supposed. 

       His bone marrow biopsy that we've been waiting for, fell through yet again.   It was something they had planned to do Friday but weren't able to make happen and then because of the weekend the team that would do it wasn't available until today.   We thought that things for sure would happen because it was an official time on the schedule not just an "add on".   When things were running a bit behind we asked for an update and they said that someone from transport would be up to pick him up in about 20 minutes.   However apparently there was an error in entering the procedure and the people who could do it were already in another procedure or already gone for the day.  Our nurse today had worked so hard to get everything lined up so that he would be ready.  So frustrating!  They promised they will get him in in the morning tomorrow, but it's very likely even if they do, the results won't come back until next week sometime. 

      One thing that has been really nice about being here is the food.   From 7 AM to 9 PM we can call and place a food order at any time.  The funky taste in the food is doing better and he's had some pretty good meals the past couple days.  I've always thought I would be living the life when we could order room service, I always imagined it in a hotel not a hospital.   However, being able to order food for myself and eat with him is a very nice luxury.