Things I am grateful for...

I truly have so many things to be grateful for, but I thought I would just share one tonight. James, the kids, and I stopped by Mom and Dad's on our way home from the Bountiful Cemetery where we spent the better part of the evening with the family visiting Lamont's graveside. Mom and Dad weren't able to make it to the Cemetery because Dad was having a bad day and for some reason I just felt like I needed to see him tonight. It was late, just after 9:00pm, but I couldn't help but feel compelled to go in.

Mom and Dad were downstairs watching the movie "Rhapsody". It is one of my Dad's very favorite movies and he has probably seen it over a hundred times. In all my years I had never sat down to watch this movie with him. It is an older movie starring Elizabeth Taylor and it has the most beautiful music in it. The story centers around two musicians, a concert violinist and a concert pianist. Elizabeth Taylor chases after the self-centered violinist who is not interested in her and rejects the pianist who is completely devoted to her. Silly girl... Anyway, as I sat and watched this movie with my Dad, who was in so much pain, I was so grateful to share this moment with him. How many times had a let that moment pass before now?? I was so grateful to listen to the beautiful and transcendent music that my father loves so much. It is the music that fills his mind and brings him peace. It was so late, past 11:00pm, and my sweet baby was crying and wanting to go to bed, but I couldn't help but want the movie to last forever. I didn't want it to end or the moment to ever pass.

As I lingered just a little bit longer after the movie was over, Dad told me about the first time he saw "Rhapsody". He told me that in 1954 he was stationed at the Yokota Air Base, twenty miles north of Tokyo, Japan while he was in the Air Force. He told me that he saw the movie over 5 times in the theater when it came out that year. He paid just $.25 to see it. Even then, over 50 years ago, he was captured by the inspired music and simply loved it. Wow! I didn't know that about my Dad. How exciting to share with him a little piece of himself and of his history.

For this beautiful movie and this beautiful night, I am sincerely grateful.

Rage Against the Machine!!

Just in case you are wondering, No...the title of this post is not referring to the alternative rock/heavy metal band popular in the early 90's! Although, when I was a headstrong and somewhat unruly teenage daughter (warning: this next part may come as quite a shock to some of you!), Rage Against the Machine was my very favorite band of choice for making Dad really really angry! Dad has always had this disdain almost hatred for Rock Music (unless, of course, the lyrics are in Spanish and then for some reason it doesn't count as Rock...it's simply Mariachi music!) I remember running to my room after a "disagreement" with Dad and purposefully slamming the door and blaring "Killing in the Name" on my stereo. Wow, I really hope my children never find out about this!! I am so grateful that Dad loves me anyway and we were able to get past the hormonal "teenage girl" years!! Just in case I haven't apologized enough, "Dad, I'm really sorry for putting you through so much when I was in high school!!"

Anyway...my "Rage Against the Machine" post today is in reference to the powerful and ever ominous "Government Healthcare System". I don't mean to go into too much of a back story, but over the past three or four years, Dad has been going to the VA Hospital in Salt Lake for all of his Healthcare needs...including bladder cancer in 2007. And while I am truly and extremely grateful for the skilled doctors and nurses who have attended to Dad's needs, I fully believe that the "System" has failed us. Most recently, Dad was hospitalized at the VA from the end of February 2010 to the beginning of April 2010. He had gone in for a seemingly simple procedure to place a stint and drain his kidney and ended up in septic shock which almost ended his life. Although it was a terribly difficult and trying time for our family, Dad's determination to get well was overwhelming and he did come home.

During these six weeks at the VA, Dad had a recurring and troublesome pain in his back. The hospital staff told him that it was merely a product of being in a hospital bed for so long and that it was most likely muscular and that there wasn't anything they could do. Despite Mom's persistence, three different departments (MICU, MedSurge, and Rehab) did not order scans and didn't investigate his back pain. In all fairness, these same doctors and nurses were trying to save Dad's life and cancer wasn't even on their radar screen (however, in hind sight...it should have been!) Mom, on the other hand, has always had this amazing gift of discernment and just knew something wasn't right.

Just weeks later, with Dad facing another procedure to replace/remove the stint in his kidney, the decision was made to go outside the VA for further treatment. The decision not to go with the VA is, in itself, a truly amazing story--for another post someday! Dad met with a urologist, Dr. Bishoff on a Tuesday or Wednesday and by the following Monday, we found out that it is quite common that bladder cancer travels to the back and that he had a cancerous tumor in his back that had grown so large it had penetrated the spine and was classified as stage 4 bone cancer.

Today, Mom came over to have me help her write a "strongly worded" letter to the VA for not discovering the cancer and asking that they cover the outrageous costs that will surely be incurred by Dad having to have his treatment done outside of the "System". Mom's letter uses phrases like, "...he suffered extreme pain which was not addressed... and ...he requested an Oncologist to run tests at the VA and his request went unanswered." Mom is requesting a billing case be set up at the VA so she can start sending all of her medical bills to the VA billing office to pay. It feels a little bit daunting to take on the "Machine", but I know that our family is being watched over and even after all that we have been through, we are blessed--beyond measure. I know that somehow, it will all work out and that Mom will be taken care of fairly and quickly. This is really the very last thing she should have to worry about right now and we are all there to offer our love and support!!

There is a place for the Political Pundit

For those of you who know me, you know that I simply do not care for the "political pundit". I will be the first to say that we each have a civic duty to be informed and aware of our current political system and to be actively engaged in our communities, however, the current age of political pundits makes me absolutely crazy!! No one knows this about me more than Dad. I can't tell you how many times we've "disagreed" about listening to "the angry men" (as my 5 year old puts it) on talk radio. I have really fun memories of going shopping with Mom and the kids while Dad sits in the car in the parking lot with the radio on listening to Rush Limbaugh or Sean Hanity. (One hot day at the Park City outlets, Dad was listening to the radio in the car and the battery died--that was an adventure!!) Anyway, I keep telling Dad that listening to political commentary just makes him angry and raises his blood pressure, but he insists.

Friday night I had a change of heart! I took the kids to visit Grandpa and found him downstairs watching TV, bent over in an incredible amount of pain. There wasn't anything that could take his mind off of his stomach pain. He couldn't eat any dinner and he struggled to take his medication for fear that he would simply vomit it up again. He was clearly so frustrated and almost helpless. The only thing that would help him forget about the pain was a very heated and cantankerous argument on Fox News about immigration reform. I could feel my own blood pressure rising and was even a little bit stressed out. Normally I would have made Dad change the channel, but I watched Dad focus on the TV and not on his pain and for the first time in my life, I was grateful for loud and somewhat obnoxious political commentators. That night I found out that there is a place for the Political Pundit--downstairs in my father's basement helping him focus on the "issues" and not on his pain.

Tender Mercies

Calendar shopping is one of my very favorite things to do at the end of each year. I love to look for calendars that are both inspirational with quotes or pictures of the temple and calendars that are beautiful. I hang my calendar in the kitchen and I see it and draw strength from it's message daily. It just so happens that the picture for the month of May has a beautiful yellow tulip with the scripture in 1 Nephi 1:20, "...behold I will show unto you the tender mercies of the Lord". After a very long, emotional, and stressful day, I can honestly say that I witnessed the tender mercies of the Lord today.

Let's begin with the stresses of today... Dad was supposed to have his bone scan done at the Riverton IHC Hospital this afternoon. As I was driving to the hospital I got a phone call from Mom that said to cancel his appointment at Riverton and meet them at the IMC hospital. Dad was in too much pain (he was at a constant 10) to make it through the scan. He was immediately admitted to the IMC hospital on the 9th floor of the Patient Towers. He's on the Medical Oncology floor and it really is a lovely floor with large rooms and even a pull out bed for Mom to sleep on. Anyway... the first few hours he was there were simply excruciating to watch. The nurse was so nice and trying to help out as much as she could (although she was wearing UofU scrubs which I'm sure was aggravating Dad's condition...J/K :) But, her hands were tied. She couldn't give Dad any pain medication until his doctor faxed over orders for it first and she was getting conflicting messages from Dad and Mom about the level of pain Dad was experiencing and what medications he could take, and then they couldn't place an IV to administer any drugs. Dad asked for a phlebotomist up front to place the IV, but the nurse said that the "proper channels" were for her to try, then the charge nurse, and then the Supervisor. Finally after over two hours, three tries, and no pain medications, the ER phlebotomist came and placed his IV --in about 5 seconds!! Can we all just agree that the healthcare system really sucks?? Even after the IV, there was no relief in sight! Dad's pains in his stomach were still constant and at a 10 and he was getting really frustrated, wondering why he had to be in the hospital and why they couldn't figure out how to make the pain in his stomach go away! Dad was simply doubled over in pain and my heart was literally breaking. I kept praying and praying for some sort of help for him and then the Lord granted me a glimpse of His love and tender mercies.

I watched Mom caring for Dad, so loving and so concerned and trying so hard to make the nurse understand what Dad was going through. Mom got really frustrated trying to communicate with the nurse and had to "step out" for a second (do you all remember when Mom would go for her long "drives" when we were kids? -- it was kind of like that) But she couldn't stay away for long. Dad needed her. She came back into the hospital room and she had such a peaceful spirit about her. She was calm and happy and ready to be the strength and support that Dad needed. She walked over to his side and held him close to her and whispered gently into his ear, "I'm here for you. I'm going to sleep right over there on that bed, and I won't leave you. We're going to get through the night and have our tests done tomorrow and then we'll go home together". I witnessed something really pure and intimate and almost sacred. I witnessed over 51 years of being together in the beautiful bonds of love between husband and wife and best friends. Dad calmed right down and he was at peace. There isn't anything they can't accomplish together. Dad laid down in bed and was able to rest for a short time. Mom and Dad are eternal companions, they were sealed for time and all eternity in the House of the Lord and their love transcends all of the obstacles their mortal bodies will face in this lifetime.

The Lord loves our family and is wanting and waiting to show us His tender mercies.

The Official Diagnosis -- for posterity's sake

Okay, so I've debated whether or not to include the email that Ron sent to the family about the initial diagnosis on the blog. Ron went to the first Oncologist appointment with Mom and Dad on Thursday, May 13th and he was the first to update the family on the official diagnosis. It's difficult to write about Dad being diagnosed with cancer, but I really feel like this blog -- hopefully -- has a purpose in preserving history and helping each one of us sort through and face the challenges that lay ahead. Ron has an amazing way with words so I thought I'd just cut and paste his email.... Here it is:

--We just got back from Dr. Patricia Legant. She is a medical oncologist. She comes highly educated and has over 35 years of cancer experience. She comes highly recommended. Dad is in good hands. She has medical rights at Huntsman, although she works at IHC. She was tender and appropriate in our conversations.
--On the same note, I am confident that IHC is the way to go, and not the VA system.
--Dad will visit with the Radiologist tomorrow and will have a bone scan at Riverton Hospital on Monday afternoon. I also think he will visit with an ortho oncologist Tues. morn. The bone scan will determine if there is any further “mets” (cancer cells) in the spine.
--The primary objective at this time is to provide dad with “pain management and quality of life care”. There was talk of chemotherapy, but that path was determined not to be in the best interest for dad right now. Since the disease had entered into the bone, by definition it is classified as Stage 4. She wrote several pain and nausea prescription.
--It was determined that radiation would help shrink the tumor (outside of the bone) and provide some pain relief, however, this treatment therapy is not designed to cure the disease.
I am sure we will get a lot more information through subsequent visits/appointments.

Thank you Ron for helping us process and work through this information.

Who would have thought Radiation was a "Good" thing??

James, the kids, and I rode our bikes to Mom and Dad's house today and let me tell you...we were quite a sight!! Anyway, it was great to see Dad. As always, his spirits were high and he was basking in the sunshine. I have to say what a beautiful thing it was to see Dad so peaceful and calm out on his patio sitting in the sunshine. I will cherish that memory for a very long time! We had a wonderful lunch and then Dad started to get the pains in his back again. Our peaceful and calm afternoon turned kind of stressful as Mom tried to rush to get dad his pills and try to keep track of the last time Dad took his meds. Dad made this crazy comment like, "I can't wait for the radiation". I was completely taken off guard...who thinks radiation is a good thing?? Dad was actually excited and looking forward to the radiation in hopes that it would relieve at least some of the pain! WOW--kind of hard to hear! By the time we left, Dad was more comfortable but still in pain. I feel badly that I subjected him to about a hundred pictures with the kids! He was wincing and trying to be a good sport, but it was definitely time for us to go home!

***I thought I'd cut a paste an email that Desi wrote yesterday about the upcoming radiation schedule. Thank you Desi for keeping us up to date on the latest doctor's appointment.

I just wanted to give you a heads up on today's doctor appointment with Dr. Jeffery Lee. Dani, Craig, and I were there with Dad and Mom. It was great to see Dad in such good spirits and even making jokes about the unironed hospital gown. He was so cute with the nurses, as he kept sneaking the taffy out of the candy basket on the desk!

It looks like the radiation will take place Tuesday or Wednesday of next week. It will be 10 treatments. One treatment of about 15 minutes, every day for 10 days Monday through Friday. The radiation will continue to work for a week or so even after the treatments are complete. The doctor said 80-90 percent of patients feel a considerable amount of pain relief, some even 100 percent relief where no pain medication is needed. He had a scan done where they mapped out measurements for the treatments. The pains in Dad's stomach most likely will not be helped with the radiation because it targets one specific area. Mom will talk with the other doctors about that. All in all it went really well, and we are thankful for great medical care. I sure love you all, and am grateful for our wonderful family! Love, Desi

Brothers, Sisters and Smokey Doughnuts

I have to be honest and admit that being the youngest of seven children has not always been my favorite. We, like any other large family, have had our ups and downs and have not always "played nice"! I will say, however, that there is no other family that loves each other through thick and thin like our family!! After we all received the news about Dad on Tuesday we decided to get together and have a family council. The very next night, all seven of us dropped everything without even a second thought and traveled to our oldest brothers house to meet. One of my sisters so eloquently said, "I just feel like I need the brothers and sisters for support right now, I need my family around me." How true! We need each other and we were all there for each other. Not only were we there to talk about Dad's diagnosis and how we could all help out by taking dinners to Mom and Dad on Sundays or arranging our schedules to be with them at each and every doctors appointment, or how we were going to set up a calling tree to make sure everyone was updated on every new change in Dad's condition...but there was a prayer, an agenda, a thought about adversity, and a huge box of smokey doughnuts--the only thing missing was the lace tablecloth!! :) An amazing thing happened that night too...we each felt the power and strength that comes from our faith in Jesus Christ and the love of our family. All differences were simply set aside that night...we need each other and we're going to get through this trying challenge as a family!!

***Just a quick thought about smokey doughnuts*** There is no denying the absolute love that Dad has for Mom! There isn't a gas station that goes by where Dad doesn't stop and run in to get Mom a smokey doughnut--they are Mom's favorite! There is nothing that Dad wouldn't do for Mom. His love has spanned over 51 years and it is stronger today than it was the day they met (which is a story for another post!) Dad loves to tell the story of how when he and mom were courting he would literally fill her refrigerator with chocolate eclairs from the Mayflower Bakery. He tells how he loved Mom so much that he would double park on Main Street in Salt Lake City just to run in and get her a treat!! We each have a truly amazing example of love to follow!

The "C" Word

It's been a really long time since our family has talked about the "C" word . . . Cancer. It's seemed as though we had all had enough and we didn't have to worry or think about cancer anymore. Our family has traveled this painful and difficult path before. In February 2006 our truly remarkable brother-in-law, Lamont, was diagnosed with stage 4 pancreatic cancer. Six weeks later, our beautiful sister-in-law, Stacy, was diagnosed with breast cancer and just months after that, Dad was diagnosed with bladder cancer. How could one family be expected to fight such an ominous and terrible disease??

In May 2007, Lamont courageously and valiantly lost his battle with pancreatic cancer and his loss is felt each and every day in our family. After fighting a tremendous fight, Stacy's cancer is now in remission and she graciously lives her life helping and serving others. Dad's cancer along with his bladder was removed in September 2007 and as he puts it, "they left him holding the bag". He has an exterior ostemy bag connected to a stoma and he loves to tell you (over and over) how he's left holding the bag.

Almost three years to the date of Lamont's passing, the dreaded "C" word has come into our lives again. Today, Dad found out that he has bone cancer. The words don't even seem real, it's difficult to even write them down or say them out loud. This blog is my small and somewhat feeble attempt to try and make sense of it all and to do my best to keep everyone who loves my father updated on his condition.

I truly pray that I will able to share thoughts clearly and confidently and dedicate this blog to my loving and amazing father.