Update from Dad

I’ve felt the need to write, but I’ve been hesitant to do it. I’m not sure why, but that’s how it is.

When Luann was first diagnosed, it was a shock. There are probably past posts telling the story, but here it is from my perspective. It had been a couple of weeks since Luann had gone through her surgery and she was feeling better. They had already set up a follow-up appointment about six weeks after her surgery to see how she was doing, so it was a little surprising when they called and wanted her to come earlier than normal, but neither one of us thought much about it. I went to work and Shawnee went with Lu to the appointment.

I don’t remember who got home first, but I do remember being in the living room when Lu gave me a big hug and said she needed to talk to me in private. We went into the bedroom and she put her arms around me. Then she leaned back, looked me in the eye and said, “I have cancer.”

Just like that our world was turned upside down. For the first few moments my mind wouldn’t process it. I couldn’t comprehend anyone in our family having cancer, especially Luann. She had always been careful about what she ate, and hardly ever took even an aspirin. Being told she had cancer was the furthest thing from my mind. Then the reality started to set in.

When my mind finally accepted what she was saying and she told me what kind (Leiomyosarcoma,) I started to try and figure out what we needed to do to get rid of it. (That’s what a man does—fixes things) I tried to look it up online, but we didn’t even know how to spell it; we had never heard of it.

The first thing we did was schedule a time to record our songs together and with our family. That was very important to her. She wanted to make sure future generations would know of her love for music. Recording was harder than I thought it would be. We had both recorded before, so it wasn’t the actual recording that was so hard; it was the situation.  After we were through Loni and I went up to figure out the order and make any final adjustments. I’m afraid I really scared Loni; I broke down and cried on the way up. That was the first time it became real.

We made it through all of that and through her first round of chemo. She had six sessions, every other Monday. That was horrible, but we hoped it would kill any cancer cells left. Then she had 16 rounds of radiation. Three months later she had her first CT scan and things were great! It didn’t show any cancer and we thought we had dodged a bullet. Things started to return to normal (if there is such a thing) and we moved on. She had another scan scheduled for three months, but we weren’t concerned.

When we got the results of the second scan we were shocked. Not only was it back, but it had spread to one lung. The good news was there was only one spot. Surgery was recommended, but they wanted to wait until the first of the year. They had a new surgeon coming on board and they wanted him to do the procedure. While we were waiting we discovered a lump just under Luann’s collar bone on the front. It was hard and about the size of a boulder. (Large marble) We talked with them about it, but they said not to worry—if it was cancer they would have seen it on the scan. Without going into too much detail, it was cancer.

On a day I will never forget, Luann and I were sitting on the front porch rocking in our chairs. We chatted for a while and just enjoyed each other’s company. After a few moments of silence Luann quietly said, “I don’t think I’m ever going to get rid of this. I think it’s going to take me.”  In one of those ah-ha moments (flashes of inspiration or confirmation of something) I knew she was right. It didn’t mean she would give up, or that either one of us would lose hope, but looking back, we both knew she was right.

In January of the next year they operated on both places and removed the spots. Again we thought we were finished, but the doctor had failed to get clear margins (taken out enough tissue surrounding the spot to make sure the cancer hadn’t moved outside of the spot).

Because of the problems lung surgery causes and the loss of lung tissue they decided it was too risky to operate on the lung again, but they did on the shoulder. This time they got a clear margin, but, because they couldn’t be sure about the lung spot, Luann went through another round of chemo (six sessions) and another 12 rounds of radiation.

When that didn’t work she endured eight sessions of “The Red Devil.” This chemo was so strong and touchy it couldn’t even be exposed to sunlight. She had to check into the Huntsman Center and stay overnight while getting the treatment. Something happened during one of the rounds and everyone (including me) had to but on all the protective gear just to see her. Those were some hard times, but finally they were finished, along with another (I can’t remember how many) round of radiation.  

My beautiful wife kept fighting. She had another spot in her lung frozen, she had more biopsy’s, she took 3-4 chemo pills every day for 20 months. Those about killed her just from the treatment.

In April of this year, after another scan and lab work we were told the chemo had stopped working and there wasn’t any other type of chemo for her cancer. Instead they took two biopsies from one of the spots in her lung. They sent one back east to a company that does some kind of gene sequencing to see if they could pinpoint what all of her receptors were. (How a cell gets its food) Huntsman also kept one and processed it to see what they could find. It took the one back east about a month to get any results, but the Huntsman biopsy found that 40% of the receptors for her cancer were from estrogen. That was great news because she could take an anti-estrogen pill and stop 40% of the receptors.

 From April through most of July we had the time of our lives. Luann finally felt good and could eat again. She gained about 20 pounds and finally felt like she had some energy. During that time we heard back from the other company telling us there were no treatments or trials available for any of her other receptors. That was s big downer, but she felt so good we didn’t dwell on it. We just enjoyed being together. We spend every minute we could together. Outside of work, I didn’t do anything without Lu by my side. It was magical. We couldn’t have had a more wonderful time together.

Then, as I’m sure you already know, the cancer came back with a vengeance. Her shoulder was hurting and it just kept getting worse. The day after all of our family left (Sunday) I came home from work to find her lying on her chair looking drained. She told me she needed to force herself just to get up and have a shower, and her shoulder was really hurting. She thought that if she took a couple of Ibuprofen and got some rest she would be fine.  When I came home the next day and found her hurting even more, I called Huntsman and that’s when everything blew up. If you’re not sure what happened there are several older posts telling of her final days.

Then, she died. I was lucky enough to spend the last two weeks by her side. The kids took care of everything and my wonderful employers told me to take as much time as I needed. I wish I could express in words how much that meant to me. It’s a comforting feeling to know we were together every minute possible. I don’t have any regrets for not being with her as much as I could. What a wonderful blessing.

I need to tell everyone that helped in any way how much I appreciate and love them. Luann felt the same way. Friends and family and even strangers have been so kind and generous. It has been thrilling to see, hear, and meet so many people that loved Luann. She was always so kind and loving. During this long and torturous process she never complained and had any negative words against cancer.  In fact, at the end she told everyone how grateful she was for cancer. Someday we will all pass away and with cancer she had the time to tell and show everyone how much she loved them. She was/is a special lady.

People ask me how I’m doing. I wish I could give them what they want to hear, but the truth is; I’m still in a kind of fog. There are times when I miss her so much I feel like my heart will burst. Other times I feel her presence and know she is watching and helping in any way she can. I used to think the nights were the hardest, but there isn’t an easy time.

Last night I went shopping alone for the first time. I’ve been shopping for her or for the family or to pick up some things, but I’ve never been shopping just for me. I went to the big Wal-Mart on Riverdale Road to get some household items and band aids along with some food. What a joke! When I went I thought, “How hard can it be? I’m just getting a few things.” Boy was I wrong. I didn’t know where anything was, people were not very helpful, it was crowded and it’s a huge store. I walked up and down those isles so many times I wanted to cry. Luann knew where everything was, and if she didn’t it was an adventure and fun to be with her. Last night I had to hold it in several times so people wouldn’t see me crying. There were couples and families everywhere. I felt so alone.

Today has been a little better. I got to bear my testimony at church and thank everyone for all of their help and support and well as thank my Father in Heaven and my Savior Jesus Christ for preparing a way for Luann and me to be together again forever. If I didn’t have a firm testimony and know Lu has done everything that was asked of her, and all I need to do is stay faithful and endure to the end, we will be together forever. What a joyous thought!

Who knows what the future will bring. If fact, who cares? I don’t mean that in a flippant way, I mean, it doesn’t matter who does what to whom, or what happens, or how bad the weather is, or any of those things. They will happen whether I want them to or not. What I do know is it’s up to me to live my life in the best way possible. No one else can make me live a good life. No one else can make me be kind to others. No one else can force me to do something wrong. No one else can make me break my covenants of hurt someone or anything else. I (along with every one of us) was given the ability to choose how I want to live and how I will react to things that happen to me. It’s that way for all of us.

I had a very kind, experienced friend give me a quote I’ve hung on the door of my fridge. It was given by Khallil Gibran, and it says, “The cavity carved out of our souls by suffering will also be the receptacle of our joy.” If that’s the case I’m going to have an incredible amount of Joy, because I feel an incredible loss. I feel as if the light of my life has gone out. I know I will get through this, but only because others have done it. Right now all I want to do is cry.

How we are doing

Thank you to all of those who have continued to show love and support to all of us following Mom's passing. It is true that you need just as much support following the funeral as you did leading up to it, however, I have found that you tend to want to hide out a bit so you don't display your grief everywhere you go. I will try and update according to what I know about each of us individually.

Dad: Dad is sad. Very very sad. He has been back to work and is trying to get into a routine. It's strange to be alone at home but he is trying to adjust as needed. He would like everyone to know how thankful he is for their continued support and friendship. He really appreciates the meals, visits, calls and texts. He is taking it one day at a time.

Jenny: Jenny is back in Arizona now and is busy with her 6 kiddos. She was very very grateful to have been here with Mom during her final weeks and to stay for a week after to help care for Dad. It's been hard to be away from all of us again but we are all calling and trying to stay in touch as we can.

Loni: I am trying to be normal, whatever that is. It is not easy and I do not like it one single bit. I've taken time off work to adjust and help my kids adjust. I am appreciating the opportunity to check in on Dad when I can and take some time for myself. I will go back to work next week.

Tracee: Tracee's kiddos started school and then sweet Brody just had to have a pretty intense dental procedure due to some baby teeth developments so she's been busy caring for her family. She's back to work one night a week.

Shawnee: She's recovered from strep throat and is now back to work as well as rehearsing for her upcoming show, "Next to Normal." Her sweetie, Rich, was just diagnosed with pneumonia thus proving that 2017 is not our year. #prayersforrich

Jason: Jason started up colleague again and is back to work. He's also back to performing with his band, Yeti, and enjoying being back into his music.

Collectively we can agree that it's been a hard few weeks and we are all just doing our best to move forward one day at a time. It's nice to be together when we can because we get each other. Again, we all appreciate your love and concern and support for each of us during this tender time.

Mom's Prognosis

Hi, friends. Shawnee here.

We wanted to give a little update about what's going on with mom. I'm sure a lot of you are newcomers to the blog who were directed here through mom's YouCaring fundraiser. For those of you who don't know what I'm talking about, click here. Through that website, you can read more about mom's backstory, diagnosis, and the financial struggles of our family.

The outpouring of love that our family has received in the past few days is overwhelming. In the darkest time of our lives, we have felt the love of so many amazing people, and this has brought peace. Thank you so much.

I have been tasked with writing about the current status of our dear mom. On Monday (7/31) we met with mom's oncologist at Huntsman. So much happened during this visit. We were all either there or on FaceTime. We were able to see her scans from April and compare them with the scans she had done July 25.

What you're looking at is mom's lungs from above. The large black sections are air in her lungs. I have circled the tumors so you can see the amount of growth that they have had within 3 short months. This scan doesn't show it, but it's actually 3 large tumors on/in moms right lung.

The large gray mass is mom's liver. The spot that is circled is the size of mom's tumor in April. We didn't take a picture of the current scan, but it now takes up about half of her liver.

These aren't the only tumors that she has, but these are the most significant.

As you can see, these are significant growths for only 3 months. The oncologist let us know that, because of the rapid growth, mom has between 1-2 weeks and 1-2 months to be with us. To say we are devastated is an understatement. Mom has fought so hard. As we were embracing each other and crying, the sweet nurse turned to mom and said, "Cancer didn't win. You still won." And she is right. Mom is a survivor, and she won. She has fought with everything she has, and I am so proud of her.

This picture was taken as we were getting the news from mom's incredible. Mom LOVES her team at Huntsman. Dr. Werner and her team are heaven-sent. She cried with us. They all love mom - she is the ideal patient. She loves them so much and she is so sweet and never impatient or rude. They've all blessed each others' lives.

Sweet nurse Emily who reminded mom that cancer didn't win - she did.

Mom's team. There are no words to adequately thank these angels for the care they have given. They are truly such kind souls and they care so much. What an incredibly hard job to have. They handle it with beauty and grace.

Dr. Werner let us know that mom's pain will get much worse very quickly and she will begin to have a harder time breathing (she already gets very out of breath easily and coughs a lot). Luckily they will be able to keep mom very medicated so she isn't in pain (and dad promised mom that he won't let her experience any pain), but with the amount of pain killers she will be on, she will be very tired and won't be able to move around a lot.

As of yesterday we have 1-2 good weeks left with mom; it would be an absolute miracle if she is still lucid after 3 weeks. Hospice came in today and did an evaluation. Hospice care will begin immediately. We are so grateful for them and that mom is able to be home during all of this.

People keep asking how we are doing, and it's hard to explain. We are devastated. There is not even a word to describe how we are feeling. It's so hard to mourn someone who, from the outside, looks healthy. It's impossible to imagine that in a couple of months, she won't be here anymore. It's so hard to watch her decline so rapidly, and I know that any of us would do anything to take the pain away from her. We are all trying to memorize her voice and the way she feels and smells.

We feel so lucky that we are able to say everything we want to say to her, and we are able to shower her in love and adoration, but it's still so hard. There's never a good or easy time to say goodbye to someone you love so deeply. She's the best woman I have ever, and will ever, know. It's also incredibly hard to watch dad say goodbye to his sweetheart. Anyone who has seen them together knows that their love is truly unique and it runs so deep.

For now we are spending as much time as possible together (speaking of which, if anyone has access to buddy passes please reach out to Loni at lonikenn@gmail.com so we can get Jenny and her family here from Tucson ASAP). Mom has loved having visitors, but she does get tired quickly. There will come a day when we will feel it's best for only immediate family to visit, but for now, she is loving talking to people. Please contact dad or one of the kids to set up a good time to visit.

If you're wondering what you can do, it's come to a point where we will just be honest. We have a lot of needs right now that we weren't anticipating. Mom and dad need meals. People who are staying here and caring for them need meals. My sisters and brother need meals. We are all so overwhelmed and so busy trying to plan and prepare and we don't really have any time at home or time to prep anything.

We need help covering expenses for the funeral and medical bills, and you can read about that and donate by clicking here. Mostly we need prayers and positive thoughts. We don't want mom to feel any pain. We don't want it to be long and drawn out so she is suffering. Mom is so worried about losing her dignity in all of this.

We love you all. Truly. I'm sorry if all of this is too blunt and to the point, but honesty is the best policy, and it's too hard to sugar-coat it. Sure do love you!

Update on our sweet Mama ❤

Hi, all the kiddos here are writing this post to give an update on mom.

Mom has been having intense shoulder pain for the past 3 weeks. Last night she was advised to go to the ER as they suspected a blood clot. While there she was given a CT scan and the results showed that the she has 3 tumors in her right lung, one had grow almost double and that she also had cancer in her left lung and on and in her liver and various places in her abdominal cavity.

They gave her some heavy medication to help her pain and today she was seen at Huntsman. She had an ultrasound on her right arm and it was determined that she does not have any blood clots. She was given IV pain medication and finally found some relief.

At this time the plan is to move forward with radiation on the largest tumors in her right lung, to help decrease her pain. Depending on how the tumors respond will then determine the prognosis and timeline.

She is, as always, in good spirits. Dad will be home with her this week. They hope to be able to spend as much time together as they can. She is tired and in pain but hopefully the medications will help.

We appreciate all of the love and prayers on our behalf. We sure feel them! ❤

New treatment for Luann

We found out through the biopsy that I had in April, that my cancer feeds on estrogen.  So I have been taken off the daily chemo pills and have been given an estrogen blocker.  It's a pill I take daily.  I am feeling amazing!  I'm not running to the bathroom any more.  My appetite has improved and food tastes so good!  I love to eat!  I've even gained some weight.  I'm going to have to watch that. I haven't notice any side effects from this new pill yet.

Ken and I spent seven days in Tucson with Jenny and Russ's family June 9-16th.  We had such an amazing time with them. Jen takes the kids each day to the YMCI.  Jenny and Abigail are able to workout and the other kids go to daycare.  I was able to attend yoga classes while I was there and I loved it.  Now that I'm home I'm trying to find a place that I can go and continue with yoga.  I've started an exercise class that is sponsored through the American Cancer Society.  It's Tuesday and Thursdays for an hour and I'm really enjoying it.  Some of the members of my cancer support group go to that class and it's fun to be with them.  We even went out to lunch together yesterday after our workout.  They are a great bunch of people. I'm feeling stronger each day.  I'm walking each evening for 30 minutes on the days I don't have my exercise class.  I haven't been able to do that for a very long time.

Ken and I were talking a few days ago about how much we are loving this time in our lives.  It's really sweet!

Update on Luann

Good Morning!
I had a new, scheduled, CT scan on April 14th.  Ken and I met with my new Oncologist, whom I love, on Monday April 17th (Jenny's 38th birthday).  She told us that three of the spots have grown quite a bit from the last scan I had in December of 2016.  She said that the daily chemo pills that I've been taking the last 21 months wasn't working any more.  More than likely, my cancer had mutated to where the pills weren't able to work anymore.  She told me to stop the chemo pills. She scheduled a biopsy for Tuesday April 25th. They took two core samples and sent it off to Foundation Medicine, a company in Cambridge Mass.  They will map out my cancer and hopefully figure out what my cancer feeds on and how best to fight it.  The process will take three weeks.  My next appointment is May 24th and hopefully my oncologist will have a plan for what to do next.

I am not running to the bathroom anymore!  It's awesome! My appetite is back and I'm loving food again.  My pants are getting tight. My favorite place is Chuck a Rama! It's been nearly five years since I have been able to eat like this.  I'm in heaven!

Most likely, I will start a new infusion chemo called Trabectedin.  It's made up of poison from sea urchins.  It is given every three weeks and it's a 24 hour infusion.  So it would be given in the hospital.  It is for soft tissue sarcomas.

There is a new spot, that we noticed about four weeks ago, on my left side under my shoulder bone.  The doctor said that, most likely, it's cancer.  We, of course, are very concerned about this spot and asked if it could be removed.  She said that it would be good to keep it and we can watch it and see if the new treatment can shrink it or possibly make it go away. Wouldn't that be awesome!

Ken and I had a feeling like something was up.  We were very nervous about this CT scan.  So we weren't too shocked when we heard the news.  Ken is very upset and I'm worried about him.  I HATE what this does to my family! This cancer journey is coming up to five years. It's hard to believe it's been that long. The hard thing is not knowing what's next or how much longer it will go on.

I have faith in the plan of salvation.  I know that we lived before this life.  I know that we are all here on this earth for a reason.  And that reason is to gain a body, to have our free agency, to be tested and to return back to our Heavenly Father and Jesus Christ. I'm so grateful for this knowledge!  I'm so grateful from my wonderful, awesome husband Ken!  He is my everything and I know we will be together forever and ever!  I'm so grateful for our children and their families!  They mean the world be me.  I'm so grateful for temple covenants that have been made so we can be together forever!
I pray that I (we) can stay strong and stay the course!

News from Ken

HI, this is Ken. I have been very hesitant to say anything but my family feels like I should let people know. There isn’t a good was to say this so I guess I’ll be blunt. I have cancer; Prostate cancer to be exact. I guess if you’re a man and you’ve got to choose a cancer, this is the cancer of choice.

I can’t tell you how many times I’ve heard (or said), “Oh, you’ve got nothing to worry about. Something else will kill you before prostate cancer ever will.” If I was 76 – 80 years old that could be true. But even then, my doctor told me those men would have died from cancer. They just had other problems that got them first. He said that if you don’t take care of any type of cancer it will kill you, (unless you die from an unrelated problem). I never thought I’d hear this, but, for this type of cancer I’m too young. I should be 15 – 20 years older before it starts.

For me, it started right around my birthday in October. My lower back started hurting again. At times it felt like someone had hit me across the small of my back with a baseball bat. That went on for a couple of days, and then I noticed I was passing lots of blood in my urine. I finally went to the doctor (PA) who, by my description of what hurt and what was happening, thought I was probably passing a kidney stone. That eased my mind for a couple of days, but nothing happened except I kept passing more and more blood. Finally I went back to the doctor. He sent me for an CT scan to try and pinpoint where all the action was. I went back again the next day only to find out the test hadn’t shown any kidney stones. In addition, it wasn’t able to pinpoint what was causing all of the bleeding. I went back to the doctor and he did an in-depth exam in his office going in from the front. (Without sedation) The tube had a camera so the doctor could see what was going on. He told me (I was awake and paying close attention to everything he did and said) he expected to see where a stone or two was blocked, but all he could see was blood. He had to keep draining it every few seconds so he could see anything. (There was a TV by my table so I could turn my head and watch what he was doing. That was an interesting TV show. L)

After checking everywhere he finally decided there weren’t any kidney stones. Nothing else looked bad or suspicious, but by now I was passing so much blood I was running down a little. We were all baffled, but as we were driving home Lu and I started talking about our medications and any changes we had made recently. We had changed to a prescription-by-mail service and I had just gotten a new bunch of pills. I was still taking the same medication, but when I got to checking closer I discovered my warfarin pill was for 10 mgs and not 5 like it had been before.  (They both looked exactly the same, so I figured I must have been taking twice as much as I should have been taking.) We went back to the doctor and had an INR blood test done. It checks the thickness of your blood. Normally your blood should be around a 1. While I was on the warfarin they tried to keep it between 2 and 3. (This was to prevent blood clots.) When they checked it this time it was 14.8! Needless to say, the doctor was concerned. He called my regular Doctor, Dr. King Udall (who has been my doctor for almost 30 years, and who I really like.) I didn’t appreciate the seriousness of it until he called me at home and spoke very gently but firmly to me. He said, “Ken, I want you to stop whatever you’re doing and go right to the emergency room. Don’t bump or run into anything, and don’t wait. Do it right now!”

I walked into the kitchen and told Luann (who was having a man fix her kitchen lights.) She became quite concerned and we left immediately for the hospital. (We are lucky enough to trust our electrician and left him to fix the lights.)

We’ve been to lots of emergency rooms in the past few years between Luann’s problems and her dads. Unless you go in an ambulance it seems like you have to wait forever.  This time it was different. As soon as we told them I was there because my INR was 14.8 they immediately took us back to a room and had me sit on the bed and not touch or bump anything. Then a nurse came in and gave me a big shot of vitamin K, and we waited around for a couple of hours. By that time the vitamin K had done its job and my blood was thick enough to clot if I broke a vessel or something.

That was the start of it all. During my exam in his office my urologist checked my prostate and discovered it was enlarged. (They call it BPH) It didn’t have any strange bumps or look discolored or anything, just big. Anyway, that led to a roto-rooter job in November. I went in for outpatient surgery on the 14^th, but there were a few problems and I ended up staying overnight and coming home the 15^th with a follow-up scheduled for 3 weeks. On the following Tuesday (one week later) my urologist called me at home and told me they had biopsied the tissue they removed from my prostate and it had come back showing cancer.

Looking back on it now I realize I was in a daze. It didn’t seem real. We set up another appointment for a little sooner, and I just went about what I normally do in the evening. It didn’t’ sink in until I had some time to sit quietly and think about it.

So, here we are. Luann has leiomyosarcoma and I have prostate cancer. What a pair we are. Luann teases me and says I was getting jealous of all the attention she was getting. Believe me, I would much rather everyone focus on Luann.

For right now we wait until the first part of March and do another biopsy. We have a baseline from all the tests and results we did in November. The new ones taken in March will give us a clearer picture of what we’re facing.

My emotions are all over the place. Some days are diamonds, some days are stones. Sometimes the hard days won’t leave me alone. Sometimes a cold wind puts a chill in my bones. Some days are diamonds, some days are stones. (Thanks John Denver)

If I stay busy I do much better than when I have some time to think. I guess I’ll stay busy.