Sunday, September 17, 2006



So I wanted to include some pictures of what I looked like before and after having developed Cushings. I also included below a copy of the email I just sent out to everyone about my surgery. It was a bit shocking for me to see just how much the Cushings and this tumor has changed my physical appearance. Have I mentioned how I think I look like the staypuff marshmellow man from Ghostbusters the movie? I have also posted before and after pictures and will continue to post more on the website that has been set up for me by my friends (the url is in one of the paragraphs below).

A lot of people have been asking if I am nervous about the surgery tomorrow. Honestly it feels more like Christmas. I have all the anticipation that you get the day before, wondering what your going to get and wether or not you will like it. Knowing that it is coming and wanting it to come, but not wanting it to come because of all the prepration and effort you put into preparing for the day and then knowing it is going to end. Really, that is how this surgery feels to me. It's kind of odd to think it's almost here and although I would prefer to not have surgery, I am looking forward to feeling well again.

So here is the surgery update and news, sorry for the late reply. I did consult with the doctors at the Huntsman Cancer Institute, but have decided to stay with my surgical crew at LDS Hospital. I report to surgery tomorrow, Monday the 18th of September, at 10:45 a.m.

I am not sure how long the surgery will be, but I know at least 5 to 6 hours long. Right now the game plan is to go in, try and remove as much of the tumor as possible. Most likely remove the adrenal gland, check the kidney out and remove that if they have to (hopefully not), possibly remove part of the liver (if they can’t get back far enough to the tumor or if the liver is damaged or been invaded by the tumor), and then repair and reconstruct the Vena Cava. Once they remove the tumor they will send it to pathology to determine if it is cancerous or not. If there is cancer then they will do a type of radiation therapy called Interoperative Radiotherapy which is a method of delivering radiation during surgery by directly exposing cancers to electron beam radiation with normal structures being removed from the treatment field. It’s kind of a neat process how it works and they great thing about using the electrons instead of an x-ray type radiation is that the radiation beams only go as far as they want them to, so if they only want the beam to go 2 cm thick then it only goes that far unlike x-rays which slowly taper off until they dissipate. This means there is less damage to places of my body that don’t need to be radiated. My radiation oncologist is a great guy as well. I met with him on Wednesday. He actually was the same radiation oncologist that my Grandpa Sorensen had when he was at LDS hospital. All of my surgeons were highly recommended by the surgeon I consulted with at Huntsman. I will be in the hospital for ten days up to three weeks. So if you would like to visit just give one of my family members a call (see paragraph below) and they can give you my room info and stuff. I would love to see anyone who would like to come.

Also for those of you who aren’t aware I was on one of the local news stations (Fox 13) Tuesday night. My sister set up the interview, I found out about eight hours before the news crew showed up to my house. They interviewed me about Cushing’s disease (which I have because of the tumor). If any of you want to see the interviews we are trying to put them on my website. We have an official website set up to track the progress of my health it is: www.friendsofbecky.com

The friends who are maintaining the website will post all the recent information on it. We also have links on the website where you can see before and after pictures and stuff. More will be added as we go along. Chris is going to try and keep the emails up but I am not sure how much time he will have to send stuff out. We will try and call most of you or send you a message via email after the surgery. I think though that it would be best that if anyone wants updates and haven’t heard anything by Wednesday that you call Chris at (801) 884-6434, Carrie Greenberg at (801) 274-0044, or Boyd Miner at (801) 358-8022 or (435) 503-8085.

We love you all and hope you are well. Feel free to pass this information along to anyone you think may want to know about it. Thank you again to everyone for all your prayers, comfort and love. Knowing there are so many people out there praying for me and knowing that you care has been one of the things that has helped me most during all of this. So thank you again for everything.

Have a great day.

Love,
Becky

Tuesday, September 12, 2006


These are my September 11th thoughts. I meant to post them yesterday but my computer didn't want to comply.

I didn't accomplish a whole lot today, but I did play with Anna a lot today. It was all possible due to the fact that the first time in over three weeks I haven’t had some sort of appointment. Anna played doctor and checked me out to make sure I wasn't hurt or sick. She helped me unload dishes from the dishwasher and clean the kitchen. The best investment I ever made was the 75 cent toy vacume cleaner from Deseret Industries! She also tried to help her doll go potty on the toilet and almost dropped the doll into the water and put a diaper on her teddy bear so he could go poop. One day when she is a teenager I am sure she won’t appreciate me talking about her being obsessed with the potty and making sure her dolls properly use the toilet, but it is just so much fun to watch her grow up and get excited about little things like that. I just can’t help myself! We also went out to the garden and she proceeded to trample the bell peppers and pick the green tomatoes for me. It was a good non-productive day and I was happy to be so irresponsible.


It was kind of neat also to be able to see Jared, my brother on CNN today. With all the September 11 ceremonies and coverage on T.V. about the War on Terror, Boyd was watching it as he was working. Jared has been in Afghanistan for a while and occasionally will get to call or email Boyd and the family. Today, fittingly so, we were able to see just a few glances of my brother in some footage that was shot in his unit. The reporter was covering a September 11th memorial service that his troupe was doing and in the middle of it they were attacked with artillery, so of course the ceremony was put on hold while they took care of business. We saw Jared load artillery and fire back. We also saw him standing in formation at the memorial service. They were just brief glances but I was so grateful to be able to see Jared and know that even though he is in all the middle of the fighting and destruction that he is there serving, doing his duty and for the moment he is alive and well. I also am grateful to have been able to share that moment with Boyd. He knows what Jared is going through, he knows how hard it is to be serving people in such desolation, some who don’t even care that he is there risking his life for them. But to also see the pride that he carries for Jared in doing what he is for his country, his family and the world.

Another good thing about today is that we have tons of cookies and sweets here at the house. Susan Fox (the cake lady) had a ton of left over cookies and brownies and had to get rid of them and she wasn't open today for business so she brought them by the house. She got all emotional about the surgery and it was her way of showing she cared, by filling us with delicious cookies! I have been trying to eat well, especially because I think it will help with how I do on recovering from surgery. Not that I don’t have good nutritional habits, but it was nice to splurge a little and have a cookie today. 

Anna loved the fresh broccoli that we picked from the garden today. I put it in the skillet with just a tiny bit of water and steamed it for about 6 or 7 minutes. I added a little butter to her broccoli and gave it to her, holding my breath and watching intently to see if she would try it out. She has been on this anti-broccoli kick for months now. To my surprise, not only did she eat the bowl of broccoli but signed for more when she finished that one off. Three bowls, a cup of applesauce and a quarter of a sloppy joe and four orange slices later she was signing all done and ready to take on the world with a full tummy. She even turned down the cookie I offered her. I am sure with how skinny she is there are people out there that think I don’t feed her enough, but if you see her eat you would never be able to say she doesn’t eat well. Just a little pride as a mommy coming out in me. I just hope it lasts and that at seven she is still enjoying vegetables and fruit as much as she does now. Although if anyone has any advice to help her put on the pounds in the backside a little that would be nice. She is getting to be tall enough that I need to have the longer pants (especially now that fall is starting to set in and things are getting a little chilly here in the mountains). The problem is she is tall enough for the larger sizes to fit well but she is so skinny around her bum that the pants sag or fall down. I think I may just resort to tacking the pants in the back or on the sides so they don’t fall down when she is running around and playing. She is becoming very adept in stripping off clothes when they bug her now. But she still hasn’t figured out the onesie snaps or zippers on the footed pajamas yet so I am safe from midnight diaper removals as long as I make sure she has one or the other on her at bedtime.

My mom waxed my face yesterday (Sunday), and I have to say it was so nice to feel a little less like I am turning into a man. I don't have a mustache and beard anymore! And it wasn't nearly as bad as the first time. Maybe because my facial hair was twice as long and easier to see this time. But I am amazed at just how much better it made me feel about my appearance. I haven't dwelled that much on how I look because, lets face it I haven't been able to control that part for a while. But I didn't realize just how much a simple face wax would make me feel better about myself, I even put on makeup!

Lately I have been trying to find gratitude in having Cushing’s disease and the Surgery. Not that I was asking to get sick or anything, but just trying to see how this can be something that I can learn more gratitude from. For instance, the other night my feet were so swollen and sore that I could barely walk. It hurt so much. Chris took some essential oils and rubbed my feet and legs to relieve some of the swelling. He rubbed my feet for at least 30 minutes and he was so tired, but he took time to do it for me. I have always liked having my feet rubbed, but words cannot describe how good it felt to have my feet and legs rubbed at that moment. As Chris and I talked he mentioned to me that I would never have known how good it feels to have your feet rubbed when it has been as painful as it is without having the tumor, because the tumor is what is causing the Cushing’s and swelling in my feet, legs, hands and face. He then said that now I know better how to rub someone else’s swollen sore feet, because I know what feels good and what helps. It made me think of Anne Gillis, the land lady of the basement apartment we rented when we were first married. She suffers from Diabetes as well as other problems. Her feet were always so swollen and sore; it was very difficult for her to walk. I wish now that I could spend some time doing the same thing Chris did for me. Maybe when I have recovered enough from my surgery I will give her a call and see if I could come and visit and rub her feet. Although she may think I am a little weird, but maybe not… We shall see. I do know a few people who could probably use a foot rub as well who probably wouldn’t be so weirded out by me asking to rub their feet for them.

I was reading an article today in the Ensign (A monthly magazine put out by my church for those of you who aren’t familiar with it). The article was written by a lady facing a relapse of cancer and basically being told that it was going to eventually end her life. It was a very positive article. I don’t feel personally that this illness is going to kill me and that’s not why I chose to read the article, but it was nice to read and reflect on some of the things said. It just added encouragement to focus on the little things in my life, the gratitude. In the article she included some scripture passages that I found very inspiring. I have found through this illness and everything going on that it has also brought me closer to my Heavenly Father and trusting that even though something bad has happened to me, I can’t focus on the “why me when other people who don’t live as healthy are totally fine” attitude.

I just wanted to share some scriptures she included that really touched and inspired me. The first scripture comes from 2 Timothy1:7, which says “For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind”. Another passage she shares is John 14:27: “Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.” Something she said also touched me, which was “When we face personal and family problems, even serious illnesses, we can be conquerors. We may be physically destroyed, but we need not be defeated… from an eternal perspective, the most important thing is not how we die but how we have lived. Have we put our lives in order? Have we accomplished the really important things? Have we put aside that which is unimportant?”

I believe firmly that how well I recover depends not only on the physical capabilities of my doctors and myself but on the emotional and spiritual aspects of my life. Now more then ever I need to focus on the Lord and take comfort that he is watching over me and will be there no matter what happens. As with any major illness there is always a risk that I won’t survive, but knowing there is more to just this physical earthly existence and that I will be with my loved ones again brings me joy and comfort. Not everyone agrees with this, and it makes me sad sometimes to see how they struggle with fear and uncertainty, and without feeling the assurance that I feel. I can only hope that they will some day be able to feel the peace that I feel about my illness, the surgery and the long road of recovery that I have ahead of me. I believe that I may have made my condition worse by not dealing with certain stressors in my life, but mainly this is just something that happened, blame it on bad family genetics, emotional issues, whatever; so something bad happened to me. It sucks and it happens, but I can cherish the things it has taught me so far and will teach me later on. I can take time to better appreciate living.

Sunday, September 10, 2006



I am posting some pictures of what Cushings disease and the tumor has done to my outside appearance. I look pretty typical to how most people with Cushings Disease look. The other day I went to dinner with my Mother and Sister-in-law. The restaurant we went to had quite a few teenagers that I had taught for years either with swimming lessons or on swim teams. These are teenagers who would have definitely remembered who I was. But not a single one recognized me. It was an odd experience. I went home that night and Dakota took the pictures so my mom could wax off my beard :)

That night as I looked over some pictures from four or five months ago I was shocked to see just how different I do look. Although I do have to say the resemblance between me and the stay puff marshmallow man from Ghostbusters was amazing! I have hope that after the surgery and slowly coming off the steroids that I will be taking for the Cushings disease, that things will return to normal. This means no more mustache and beard, a smaller looking tummy, no more moon shaped face, no more double chin, less acne and the best part no more swollen feet and hands! It seems to be that way for other people with Cushings. Cynthia, my mother-in-law has a cousin who has Cushings disease as well and she said after her surgery (her tumor was on the pituitary gland), that she was loosing the weight so fast and didn't have change a whole lot with her diet or exercise. I am excited to loose the weight without dieting. I am also looking forward to fitting into some of my clothes again. Although I don't think I will ever be a size three again, I would be happy to be at a healthy weight, like a size eight. It helps that I have been trying to eat well

Thursday, September 07, 2006

Hello Everyone!

So I have to say sorry for not updating everyone sooner, it’s been a busy week. Health updates: My surgery date has been changed again. It is now the 18th of September, that is a Monday I believe. I am also trying to work in a consult with surgeons at the Huntsman Cancer Institute to decide if I may want to switch over there for the surgery. It most depends on how soon they could get me in for surgery. I believe the surgeons I currently have are skilled and would do a good job on my surgery, but I have just had some conflicts with how the surgeons are communicating with each other and with me and wanted to just see how I felt with another opinion.

The good news is they feel they only have to reconstruct the vena cava, not fully replace it. The surgery is going to be pretty long and extensive. They aren’t sure what other than the tumor they are going to have to remove because the tumor is located directly behind the liver so it’s hard to see the extent of the damage as well possibly needing to remove part of my liver in order to access the tumor. And they still aren’t sure if they will be doing radiation treatments in certain areas while I am open from the surgery. Depending on how extensive the surgery ends up being will determine if I am in the hospital for four or five days or possibly up to two or three weeks.

The plan now; with shuffling of surgery dates and possible surgeon/location changes, is just that once I go into surgery we will try and let everyone know through phone calls and emails and my newly set up blog. When the surgery is over we will try and let people know the same way. The days following my surgery anyone is welcome to come and visit, healthy people preferred ;) And I would love to have visitors, so if you want to come visit please do.

To document and give people more ways to access updates with this interesting journey with my health Chris and I have set up a blog on google. The link to it is:

http://keepingthemoments.blogspot.com

It is still being worked on so be paitient with it, but we will post all the surgery updates on it so if your wanting health updates and such and haven’t received an email or phone call it will be posted there. We also are trying to put some cute pictures of Anna on as well so if you are tired of hearing about all the health stuff you can look at cute pictures of Anna instead!

I want you all to know how much I love and appreciate all the support we are receiving from everyone. I feel the power in the prayers in our behalf. Words cannot express the gratitude I have felt personally and my family as well for all your love and support. We will continue to keep you updated on things and the progress of everything. You are always welcome to call as well or if you want more detailed updates. (435) 503-8085

We love you lots, and hope you and yours are doing well.

Love,
Becky

Saturday, September 02, 2006



Hello Everyone!

I don't know who knows and who doesn't because I have talked to so many people this week but there have been added developments with things regarding my health (and more yet to come...)

The surgery date has been changed. I will be having surgery on the 14th of September (Thursday) not the 11th as planned. The reason is because the more they look at the CT scans and the results from the tests they are doing are pointing to more complicated things and they are pulling in more specialists to work on me during surgery. So basically the 11th they had another surgery as well as mine and they feel that they need as much time as possible to work on me without feeling like they are "rushing" the surgery. And so the 14th was a surgery free day for all specialists so they decided to do it then. It looks to the surgeons like my tumor is "invading" the vena cava (see attachment). This is a problem because the vena cava runs through the liver and delivers all the blood from my liver down back to my heart. This would partially explain whacked out blood pressure readings. So they are pretty sure they are going to have to cut out part of my vena cava and replace it. They are still waiting for test results to determine just how extensive the surgery will be. Basically this boils down to I am having a rare major surgery done.

I have however decided that I will need to find other sources of paying for this surgery. So if anyone knows of any programs out there let us know. We are going to have to cover at least 20% of the overall cost if not more. So I am now looking into the National Institute of Health or National Institute for Rare Diseases to see if they want to study my case because they pay for all your procedures if you consent to them studying you, but I am not sure if it will require me participating in a clinical trial or not (which I may not want to do).

Another option I am looking at is seeing if Discovery Health or TLC or one of those channels that does the rare medical type stories wants to come and tape my surgery and use it for one of their shows. I figure that they probably would help to pay for some of the costs and I would have a video of the surgery on top of it!

Anyhow, I will keep you posted with news as soon as I know. Please let family and friends know the surgery date has been changed. I am trying to reach everyone I can about it, but I just have a lot of people to talk to.

I love you all, take care.

Love,
Becky