All a Dream.....

It feels like that this last week has been all a dream.  It doesn’t feel real that Shane is really gone.  I am guessing that maybe that is because he isn’t really gone, but still spends a lot time with us here in the house.  The boys have expressed the same feelings to me.  It does just feel like he is on a vacation and will walk in the door anytime.  How I wish that were the case.

It has been hectic getting everything ready for his services but so good to be able to look back through all of our pictures and remember all those good times.  The boys are continually saying how much they miss him and how they wished he were still here.  Rowdy is lost without him.  The first couple of nights, he wandered around the house like he didn’t know what to do.  He spends a lot of time sleeping in Shane’s recliner chair.  Yesterday, I turned on Shane’s cell phone and many text messages came in and the noise it made alerted Rowdy and he came running into the kitchen as I am sure he relates that sound to Shane.

Shane's Obituary

Shane Brooks Sager
1976 ~ 2011

Shane, 35, passed away December 10, 2011, at his home in Highland, Utah surrounded by his love ones. He was born on February 28, 1976, in American Fork, Utah to Mindy Barratt and Robert Brooks. He was married May 18, 2006, to Jennifer Leslie Shepherd in Lehi, Utah. He was a dedicated and loving husband, father, brother, and son.

He loved to spend time with his sons doing most anything, from playing catch, to camping, to watching his sons’ baseball and football games. He had a passion for the outdoors. He cherished the time he was able to spend with friends and family doing the things he loved, like snowmobiling, wakeboarding, hunting, backpacking, and hiking. He was a member of the LDS Church. He happily served for many years with the young men. He was extremely influential in their lives and many of the boys considered him their hero.

He had a great sense of humor and constantly made people laugh even when times were tough. He had an extraordinary love for life. He battled courageously with cancer (angiosarcoma) for almost 4 years. He was an inspiration to everyone around him. Because of his amazing attitude, many had no idea of the trial that he was enduring.

He worked at Wells Fargo as a Computer Systems Engineer for 14 years. He was a very dedicated and hard-working employee, having worked up until days before he left us.

He is survived by his wife, Jennifer Leslie Sager, his children Dylan, Dallas, & Tyler Rodabough, his mother, Mindy Sager Cook (Rick) and his brother Jace Sager. Also, Robert Brooks, a sister, Ashley Brooks. Preceded in death by his father, Ron Sager, brother Cody Brooks, and grandfather Bob Brooks.

Funeral services will be held Friday, December 16, 2011 at 11:00 am, at the Highland 26th LDS Ward Chapel, 10417 North 6750 West, Highland, Utah. Family and friends may call Thursday evening from 6:00-8:00 pm at the Warenski Funeral Home, 1776 North 900 East, American Fork, Utah and also

Funeral Services

I wanted to post the info for the viewing and funeral services.  The viewing will be Thursday, December 15th 6-8 pm at Warenski Funeral Home - 1776 North 900 East, American Fork.  The funeral will be Friday, December 16th at 11 am at 10417 North 6750 West, Highland.  There will be a viewing prior to the funeral from 10-11.

We miss you!!

My heart hurts as I sit here thinking what to write.  I keep thinking this is all a dream and it doesn’t feel real.  But I am so terribly sad to let you know that Shane passed away last night.  He held on so that he could come home and spend time with our boys before going.  I will try and post most later but thought I should let people know. 

Back to Huntsman

We have had a crazy couple of days.  Wednesday started off being a good day.  Katie (Dr. Gouw's nurse) called us and told me that he needed to come in for a blood transfusion because his counts were very low.  We needed to come up to Huntsman on Thursday so we arranged to do it at the same time.  That evening his oxygen sat rate was dropping and we had to keep bumping up his oxygen.  It got to the point that we had turned it all the way up on our home machine and he was still below 90.  So we called home health to come help us get it figured it out.  We have portable tanks that allowed us to turn his oxygen level to 8 and so we tried that but he still wasn't able to stay above 90.  So we decided he needed to go in.  We showed up at AF ER with his oxygen in the 70's even being on our oxygen tank.  They got him all hooked up and talked to us about evaluating him and sending him up to Huntsman which is where we wanted to be anyway but needed a doctor to admit him for us.  So they did some tests and at 2:30 am off we went in an ambulance to Huntsman.  We got him situated up here and they talked to us about why his levels were low...because he needed blood.  They did a scan on Thursday morning and saw that there was more fluid built up in areas that his drain doesn't get to.  The doctors came in and talked to us and told us that they are going to give him the transfusion, but that he is losing all the blood that he is being given because of the cancer in his lungs.
They gave us a 2 options.  We can continue to get transfusions but his oxygen levels were still going to decrease and eventually would need a ventilator and would be in the ICU or he can stop the transfusions and stay here (huntsman) or go home with hospice and they can make him comfortable and that we are no longer looking at weeks or months but now days.
I have been in shock since...maybe even some denial.  He seemed to have a pretty good day with pain yesterday and was even awake for a couple of hours to talk at night.  But then last night was a nightmare.  He was in a lot of pain and it was hard to get it under control.  While "sleeping" he sometimes takes off his oxygen mask and last night he fought us to put it back on him.  He kept telling us that he was done.  I finally got him talked back into it put it back on.  Mindy and I traded off sitting with him to make sure he was ok.  Needless to say...it was a long night.
We are working on getting him transported home today and will have hospice with us.

I want to thank everyone for all the emails and texts.  I appreciate the words of love and support.  He is still asking to not have any visitors.  If/When he changes his mind, I will let people know.

Sleeping A Lot

Shane is doing well.  He is just sleeping a lot.  We said that once he came home from the hospital that we would have our “Biggest Loser Marathon” since we haven’t watched the last several episodes.  Neither one of us seems to get very far into the episode before we are both asleep. 

The boys have had a rough time knowing what is going on and dealing with it in their own ways.  Dallas says to me last night, “Mom, can I tell you what I want for Christmas?”  I say, “Sure.”  He says, “The only thing I want is for Shane to stay alive forever.”  It brought tears to my eyes….all I could get out was, “Me too.”

Tyler has been drawing him pictures and wanting to go in and watch TV with him even though he is asleep within a minute of Tyler going in.  Dylan is constantly asking to help with him and bring him his pills.

I know that there are a lot of people that want to come visit and I thank those for respecting his wishes right now.   He is asleep so much, so if people just show up, I am having to turn them away and I feel bad.  But he has asked that I don’t wake him up when he is sleeping.  So please know that I am not disregarding requests.  I run everything by him and ask him what is ok and I am respecting what he wants. J

Good Night

Sunday, December 4, 2011

We got home from the hospital on Saturday afternoon to a clean house and a beautiful Christmas tree with lights.  It brought tears to both Shane and I to know that we have such great friends and family who are always there for us whenever we need them.  We appreciate all that everyone has been doing to help us.  It truly means a lot to me.

Saturday night was a little rough.  Shane had a hard time with the pain.  We got it under control early this morning and he continues to sleep.  Every once in awhile he will wake up or I have to wake him up to take some pills and talks to me about some interesting things…like telling me that I was giving him mean pills, or one time he looked at me and said, did you just hear what I said and I told him no and he said that he had just ripped on me and I asked what he said and he said that he had found a volleyball last week and was talking to someone  (I am guessing one of the boys) and says that we should ask mom to come and play but she is a cheater.  I wanted to start laughing because it was pretty funny but it also made me happy because I know when he is talking like this, then he is not in any pain.

 

Monday, December 5, 2011

Last night was a pretty good night.  He had a hard time going to sleep but slept well once he did.  He has been loving having Rowdy back home.  He has someone to feed the food that he doesn’t feel like finishing.  If he falls asleep with the fork almost to his mouth,  Rowdy is right there to wake him up.  Sometimes Rowdy is the one that ends up with the food in his mouth. J

Update on Shane

So I thought we would start updating the blog again so that people would know how Shane is doing.  I will give the readers digest version of what has been going on with Shane over the past couple of months.

He had been in a lot of pain due to some tumors on his pelvis.  So he has been battling with issues from taking pain meds.  He had started a trial chemo in September and did 2 rounds of that.  He had a scan done following the 2^nd round and the tumors in his pelvis had increased in size to 11 cm each.  At that time, there was some growth in the tumors in his lungs but the doctor didn’t feel like they were concerning.  So with the growth, he was no longer on the trial.  We knew prior to this chemo that they do not have any more treatments that they know work for angiosarcoma.  So knowing this after this trial didn’t work, we asked…What next?  Dr. Gouw said that there was a chemo and another drug that they could try that might help, but that he is scraping the bottom of the barrel to find things.  We decided that radiation would be good to do to help with his pain in his pelvis, but that because they had already radiated the area, it couldn’t be as intense and might not be as beneficial.  So Shane had that done a few weeks ago and it has really helped with the pain in his pelvis. 

During these last few months, he had some bowel issues and was throwing up.  It had gotten to the point that he wasn’t eating much and if he did, then he threw it up.  We ended up going to the ER a couple of weeks ago thinking he had a bowel obstruction.  After many tests, they told us that his blood counts were low and he needed a blood transfusion and that he had fluid built about around one of his lungs.  The next morning we had to go to Huntsman for radiation so I went and talked to Dr. Gouw’s nurse Katie and told her what was going on and she said that he needed to be admitted to get blood and have the fluid drained from around his lung.  That helped relieve the pressure in his chest and he looked a lot better with having gotten the blood.

Shane and I had planned on taking the boys on a cruise over Thanksgiving week.  After everything that was going on, I was thinking that we wouldn’t be going.  After a lot of thought and talking to Shane, we decided that I would still go and take the boys.  The past year has been kind of crazy and I needed a break from reality for a bit.  Shane had started feeling better, so I thought it would be ok.  I knew his Mom would do whatever she could to help him.  So the boys and I went.  It was hard to relax as I would sit and wonder how Shane was doing.  I had communication here and there with Shane while we were gone.  One the last night of the cruise, I had a text to call Shane.  I knew something wasn’t right.  So come to find out, he had been in and out of the ER a couple of times during the week because of the fluid and his oxygen levels – in the 60’s.  So they were able to get oxygen delivered to the house.  But then things got worse on Saturday and he was admitted to Huntsman.  They put in a chest tube to start draining all the fluid around the lung.  The fluid keeps coming because of the tumors in his lung.  I got home the next day and drove straight to Huntsman.  I really hated to see him like this.  But I was told that he was doing a lot better than from the day before.  After having the radiation on his pelvis which helped with the pain, he then realized he was having a lot of pain also in his back.  So he continues to deal with that.

On Monday, they did a procedure where they went in and put a smaller drain tube in his chest that he would be able to come home with and drain as needed there.  As well as went in and sprayed talc in areas that the lung hasn’t re-attached itself to the chest wall. (His lung had collapsed in all the craziness of the days prior).  The talc is supposed to help the lung re-attach thus helping reduce/eliminate the fluid build up.  We were told he could go home on Tuesday.

Tuesday came and went…still there.  There was still a lot of drainage and they wanted to get him off IV meds before sending him home.

Wednesday came and I got up there around noon and everything seemed ok.  He had done a scan in the morning. After a little while, Shane told me that we need to talk.  The doctors had come in this morning and talked to him about what was going on.  They told him that the cancer in his lungs has spread quite a bit since his last scan.  They told him that there was no treatment left to do.  As not only had our insurance denied the chemo/drugs they wanted to try (it is not FDA approved for angiosarcoma) but that one of them could actually make things worse with what is going on his lungs.  After talking to them and then Dr. Gouw came in and talked to us and went over things.  He told us that depending on how he does with the fluid, he might have a few weeks to a couple of months-ish  left.

It took a lot of digesting because Shane and I had just met with Dr. Gouw a few weeks ago and he told us that he really didn’t have any life-threatening tumors.  Things happened so fast and the cancer is spreading so quickly.

We talked to Dr. Gouw and then Dr. Poppe (radiation doc) about doing radiation on the area in his back that is causing him the pain and they are working with the insurance company to do that.

They talked to us about hospice a little bit.  Shane and I discussed it and we want to do the radiation first and see where we are at then.  Once we start hospice, he can’t do any other treatments like radiation or any blood transfusions (which he seems to need here and there), so we want to make sure we do all we can before choosing that option.

So needless to say, the last few days have been emotionally crazy.  We have gotten his pain manageable for now and he is hooked up getting more blood right now to boost his counts before we go home and we should be able to leave in a few hours.  I will not be posting this until Sunday as we have not had a chance to talk to our boys about the seriousness of this and will be doing so on Sunday night.

Because Shane doesn’t have a lot of energy or is in some pain or is sleeping a lot…it is best not to have visitors just stop by.  He has requested no visitors for the past few days at Huntsman and may continue to do so.  So if you want to see him, please just email me and I will have to run it by him but I am guessing that he is still not up for them.  It takes a lot out of him.

Please just continue to check here to see how he is doing and I will try and keep it updated.  I don’t want to spend my days on the phone saying the same thing over and over to a lot of different people and email is my best way of communication…and I can get to it when convenient for me.  If you want to send an email to Shane, you can email him (he may check it during the week…as YES he is still trying to work.  Does this surprise anyone?  Not me J) or send it to me ( jenlsager@msn.com ) and I can get it to him.

My Gift to You

I am not a fan of Country music, but I would like you to listen to this song really listen to the words. It is my gift to you, don't wait for some catastrophic or live changing event to live this way.

I just had another scan and everything looks great, I am continuing on with the trial drug. I really am lucky\blessed, another patient received the trial drug just recently and after taking it for a short time has started experiencing mouth sores the size of quarters.

The Good, the Bad, and the Ugly!

One Hundred and Eight Thousand seconds ago I received both good and bad news. The good news being that it looks as though I am on the actual trial drug and not the Placebo, I have been getting sores in my mouth which is the most common side affect. The Bad is really bad though, it appears that I am responding quite well to the drug, so unfortunately for the rest of you I should live to see Christmas and I will be expecting a Christmas present, sorry guys. The Ugly is, well I think you already know.

Update

So we received results to Shane’s scans last week. It showed a very slight increase in size in the one in his back, but they didn’t know if that was just the difference in how the radiologists measured it. But the ones in his lungs are either not there or were too small to measure. The ones in his lungs were very concerning, so that was definitely great news.
So Shane started the experimental treatment on Monday. It consists of taking 4 pills a day. No one is allowed to touch the pills except for Shane..kind crazy. The doctor told him that he should know within a few weeks if he got the real or placebo pill by how he feels or if he gets mouth sores. They will do another scan in 8 weeks.

One more to go.....

So Shane might get to be a part of an experimental treatment. If he is able to get in and be one of the 300, then his last chemo treatment will be next week. We were told about this a few weeks ago and it sounded really good. It is a pill that he will take daily. We do not know any of the side effects. Well today we got a little more info. There will be 300 people accepted. 150 will receive the pill and 150 will receive placebo pills...we would not know what he would be taking. So that is the scary part. After 8 weeks of taking the pill, they will do scans and see how things look. If we was taking the "real" pill and there was progress, then he will continue on with that treatment and they say that it would be free for the next 3 years. For those of you who don't know how freaking expensive chemo is...that sounds pretty dang good. One day of chemo ranges from about $10-20k depending on which treatment day it is.

Anyway, so if it is working...GREAT!! If he was one to get the placebo pill and the cancer has grown..then back to the old treatment. One thing we have been told is that this kind of cancer will never go away. He will always be on some type of treatment for the rest of his life. So if this experimental one were to work for him, most likely this is the type he would continue taking.

Happy Father's Day!!

So Father's Days and Mother's Days seem to be interesting days for Shane and I. Mother's Day is bittersweet for me since my Mom died, yet it is supposed to be a great day to celebrate that I am a mother. So I can imagine that sincce Shane's Dad is no longer alive, he feels the same way on Father's Day.

I think Shane is the greatest Dad to our boys. I can't imagine how hard it was for him to go from 0 kids to 3 kids overnight. It takes a good man to take on that kind of responsibility.

I love to see him out playing catch with them or teaching them to wakeboard. The boys really look up to him and mimic what he says and does and want to be just like him. It means a lot to me to see what a great relationship and bond he has with each one of them. He has definitely toughened them up since we have been married. Having raised the boys by myself for over 3 years, they picked up a lot of great things...like telling me that my new shirt was cute and how I smell good with my lotion on. Shane rolls his eyes when he hears that, so he is teaching them what he thinks they should know...umm like how to shoot a .22 or brand and castrate cows....quite a difference. But hey..they will be well-rounded kids.

Anyway...Happy Father's Hun!! Hope it was a good one!!

Shane has been requesting all these crazy things for his snowmobile lately...so for Father's Day, we got him 2 of them. I am not even sure what exactly they are for, but they gauges for some boost or something and I have no clue about the other one. Then I got him a couple of Gordon Ramsey cookbooks. He loves that guy and watches every show possible with him on it. Shane has become quite a cook.

Talking to Shane 101

First off I would like to point out that Jen is doing awesome, her foot surgery went well and she doesn’t seem to be in much pain. The Dr. said that the nerve was about the size of a string but the Neuroma was about the size of the end of your finger and was the consistency of gristle. She’s a trooper .

Now for me, let’s start off by saying that my scan went well, there are no new tumors and the ones I do have seem to be stable. The Dr. is thinking about putting me on some experimental drug, but for now it is the usual chemo.

If you see me in the near future here is a list of rules I would appreciate that you follow:
1. Don’t act uncomfortable around me, I can sense that a mile a way. You can NOT say anything that is going to offend me or make me feel bad.
2. If you want to know about my cancer, ask me, don’t beat around the bush trying to get information from me in some B.S. round about way, I respect people who are blunt.
3. Don’t ask how I feel, I feel fine, I feel normal, I feel better than you most likely.
4. Don’t be so sensitive, if you can’t handle me joking around about me dying, then don’t talk to me. I am realistic, I know I may die, but while I am here I want to have fun and make the most of this situation.
5. Don’t tell me you’re sorry, I am not sorry so why should you be? I have a really bad form of cancer and to be honest I wouldn’t have it any other way, if you are going to beat something wouldn’t you want to beat something difficult rather than something easy? If it were easy, anyone could do it.
6. STOP saying I look good, I interpret it as “You look good, for someone with cancer.”

I am sure I will think of more as time goes on, until then do yourself a favor and take a moment to appreciate everything you have and see. I am really lucky, I have had my eyes opened 10 fold. Take a moment and appreciate your spouse, or your kids, or your family, or your friends or even your cats, there are so many little things in this world that we take for granted, don’t wait for some life changing event to open your eyes, do it now.

Life Goes On.....

I know that we haven't posted on here in about a month....but there hasn't really been anything to post. I have recovered from DisneyLand...mostly. I have surgery on my foot on Friday...exciting....I will finally be able to walk normally instead of walking on the side or heel of my foot. Thought I better get it taken care of since wakeboarding season was coming up.

Shane and I had our 2nd year anniversary this past weekend. We celebrated it by losing a lot of money in Wendover. :( But hey it was nice to getaway and get our minds off of reality.

Shane is on Week 3 of his 2nd round of Chemo. He has a CT scan this week and we will have results sometime next week. Keep your fingers crossed that the chemo is still working. Shane is obsessed with working out still....or wait he calls it dedication, not obsession.

Good News!

Dr. Chen came and visited us during Shane's chemo today to tell us the results of his scan. She told us...GOOD NEWS!! She said they have started to reduce in size. The soft tissue and lymph node that were cancerous in his neck has "resolved completely," meaning it is gone. There is a slight reduction in the lesions on his ribs. The nodules in the lungs are unchanged, but there aren't any new ones. This is positive that they are seeing results with the chemo. He will continue on with the same treatment he has been doing and will have scans every 6 weeks to monitor the status.

I am so happy that it was good news and especially since he would have had to be hospitalized for chemo had it been bad. What would I have done with Shane in the hospital...who would be here to constantly be sarcastic and to scare everybody to death with his sick and twisted humor (Yes, it was Shane who wrote the April 1st entry as if I had written it). So we are all glad that he will be here to continue on with this.

Crazy Night

Ok so last night was scary. Shane had been quiet ever since I got home from work and said that he wasn’t feeling all that great, well during dinner when I looked over at him I noticed he was quite pale. I asked if he was ok and he gave me his usual “I’m fine”. About 30 minutes later I could hear something strange in the bathroom, as I investigated I found Shane huddled over the toilet puking up blood. We rushed him to the emergency room. After all of the crazyness in the ER and what seemed like a blur I found myself in a room watching Shane sleep with tubes and wires strung all across his body. I realize at that time that the outlook isn’t good for him and I am not sure how much longer I can stay strong. As I sit in a chair with a tear soaked pillow in my lap a thought comes into my head that I ponder and question myself about. Is it wrong for me to smother him? Wouldn’t it be better for the both of us? How long would I have to hold this pillow over his face? Of course I dismissed the horrible thoughts, but as I type this blog entry one more question arises in my heart. Do you know what today’s date is?

Chemo - Week 5

So for those of you who haven't seen Shane in the last week, he doesn't have anymore hair. It was coming out by the handfuls last week and it was really itchy. So he asked me to shave it off. Then a few days later, he took a look at his facial hair. It was splotchy, so he shaved it off. It was pretty funny this morning when one of the boys told Shane that he was starting to recognize him again without his hair. :)

He is still very positive and in good spirits. He had his double dose of chemo yesterday. He is a little tired from it and has lost his appetite. I just offered to make him some pull-apart bread and he turned it down. That is so unlike Shane. He is not looking forward to the sores he will get in his mouth - it makes him not able to tolerate his daily dose of Cholula. But he is still working out even though he is tired and he forces himself to continue eating 6-7 times per day. He is hardcore!! :)

Last time we met with Dr. Chen, Shane asked what we should expect after this first round of chemo. She had told us initially that there is a 50/50 chance of this chemo working. She told us that they will have results from his scans on his last day of chemo. They will be able to see if the tumors/lesions have shrunk. She told us that if they have gotten smaller, then he will start another round of the same kind of chemo, plus he will need radiation to get rid of the cancer in the bones. So then he asked the dreaded question of "What if the chemo is not working?" She told us to pray that it does. She said they would try a much harsher chemo next, that he would be hospitalized for 5 days at a time for.

We appreciate all the love and support we get from all of our family and friends. Thank you for the emails, text messages, phone calls (I know we are bad about answering our phones, but we try not to dwell on what is going on and talking to everyone about it sometimes makes it harder. That is why we chose to put info on the blog.) We love all of you!!

And so it begins......

I came home last night to find Shane asleep with a bandana on his head. He told me that his hair was falling out. I was like whatever...(last time he told me this, I believed him and he was really joking).
But it is true...

Shane had another chemo treatment today. Everything went well for him. I can't say the same thing for one of the ladies that was getting treatment in the infusion suite with him. She had a seizure during her treatment...a little scary.

Another visit to Dr. Chen

Yesterday was Shane's 2nd week of Chemo. He is still doing GREAT!! He feels fine. He still is working out 2 times a day. So for anyone who wants to ask how he is feeling.... he would prefer you didn't or it will be followed by...GREAT...how are you feeling? (in a sarcastic voice) It is quite hysterical actually. He is the positive, strong one in the family!!
He has a total of 9 weeks of chemo and it will end the middle of April. He is so excited for the song that the nurses sing to you on your last day. :) It's actually pretty cute.
So we received the results to Shane's bone scan from Dr. Chen today. The cancer is in the bone in many places. They are as follows: left proximal femur, right sacroiliac region, mid right clavicle, left anterior second and fifth ribs, left inferior scapula, right mid humerus, right proximal ulna, right high parietal skull, right proximal tibia. I am not sure where some of those are...but that is the list from the CT report.
Dr. Chen told us that she wants him to continue with chemo for now and when the 9 weeks is up, he will be re-scanned and re-evaluated.