Family Pictures

Throwing the deep pass!

Matt watching the game with me

Coach Bronson talking with Dusy, Jayden and his dad. They were the "Dusty to Jayden" Show

This is the wedge play which the boys love to push right through the pack!

Dusty ready for the game!

Here is the correct addie for my doctor's website:

http://intermountainhealthcare.org/services/medicalgroup/clinics/physicianclinics/plasticsurgery/pages/home.aspx

Hopefully this takes you to the correct spot!! HUGS

Hello Friends!

Hey all! It's been awhile and I thought I would give you an update on my health and other things going on in our lives!

Since my last post, I had one recon surgery to revise part of the incision on my stomach and add a little fat to my breasts. That surgery was in August and all went well and I was back on my feet a couple of weeks later. My next recon surgery won't be until August. I need to give my body time off to let it heal and hopefully the radiated tissue will continue to get better now that I have transplanted tissue from my stomach that is nice and healthy. Hopefully in August I can get implants back in and get some more of the stomach incision revised. Dr. F would like that scar to eventually be a thin white line, which would be fantastic cuz right now it is a big thick nasty looking one! Then the only other recon procedure after that will be my nipple reconstruction. Hopefully that is still a possibility it all depends on the radiated breast tissue.

Another wonderful, not really, side effect of the hormone therapy I was on, is that I developed some uterine fibroids. I discovered this because for several months I was spotting on and off. I went to my ob/gyn in October for an annual exam and discussed the problem with him. He said that this is a side effect from the hormone therapy but I had options to fix the problem. I decided to have a tubal ligation and Novasure Ablation. I had to undergo 2 ultrasounds and an Endeotrimal biopsy to make sure that I didn't have any cancer growing! During the ultrasound they discovered 2 growths on my right ovary, which did cause a little worry. Of course this was a very nerve racking time but it all turned up normal as can be! So in November I had the procedure to have my tubes tied and do the ablation on my uterus. The doctor also drained the 2 growths and sent them off to the pathologist for testing. They results came back as just cysts so no biggie. I recovered very quickly and thankfully haven't had any more "Female" Issues!! Ha!

I have really been trying to focus on my health and get back into my precancer physical self. It has surprised me how much my body has changed and how physically weak I have become. I knew it was going to take some time to get back to where I was, but boy I didn't realize just how long. I did talk to by Oncologist about it and he says that it can sometimes take several years before you are fully recovered from the effects of chemotherapy and radiation. This just means that I need to keep a steady pace and not beat myself up for the lack of progress I experience. I am really and truly hoping that I can do another Triathlon this coming summer. I should be able to know in the next couple of months if I think my body is up for the challenge.

Some really fun news...I got a call from my plastic surgeons office in January and they wanted to feature me on their new website and also do an article about the DIEP surgery Dr. F did on me in a new magazine called, "Cancer Connections." I am going to be in the premeire issue which is coming out hopefully next month! So I went to Dr. F's office for a photo shoot and an interview. I met with the Marketing Director from IHC and the photographer as well. It was such an awesome experience and one of the many positive things to come out of this ordeal. Here is the link to my doctor's website: http://intermountainhealthcare.org/services/medicalgroup/clinic/physicianclinics/plasticsurgery/Pages/home.aspx

when you go to the site there are 3 women's stories and our pictures scroll across the top of the page. When you see my picture just click on it and it will take you to my story! I have worked with so many wonderful people and I don't think I could've picked better physicians then the ones I already have. Every doctor, nurse and medical personnel I have worked with have really and truly made this ordeal a little bit easier to deal with because they have been so caring and compassionate! I would like to thank each and everyone of them from me and my entire family! Thank you...Thank you...Thank you!!!

In August I did officially STOP taking the hormone therapy, Tamoxifen. It just reeked havoc on me both physically and emotionally. When I talked to my oncologist about it, he ran the numbers of the percentage of risk I would be taking by stopping the medication. It turns out that it was only stopping my chance of recurrence by less than 5% and with the quality of life I was living, I decided that I needed to stop taking it. I know I am going to be at a higher risk because I have already had cancer but I knew I would be living a happier and more fulfilling life if I stopped taking Tamoxifen. So happily I stopped taking it and I have been feeling so much better since then! I was supposed to take it for 5 years and made it only through 1 year, but that is definitely better than none.

Now I am 2 years in remission and the next big goal is to make it to 3 years. I love each and everyone of you and thank you all so very very much for all the love and support you continue to give me and my family! HUGS and LOVE to all!!!

I will try and post some recent photos of me and the family in the next couple of days!

Endure...

Chandy headed to St. George today with Mk and D. It's good for her to get away and it gives me a chance to update. Quite often she needs a break from the cares of the world.

She seems to be doing well. Dr. Nibley has adjusted her antidepressant a couple of times and it seems like we may be dialing it in to where things are manageable for her. It's crazy to think that she's having a more difficult time with the tomoxifin (sp?) and the issues it causes than she's had with the chemo or the radiation. May have something to do with the whole 5 year duration.

She's the best! I can't believe that its been so long since her diagnosis. In ways, it seems like yesterday, but mostly it feels like we've been dealing with this for 10 years.

It'll sure be nice when we can finally turn the page on this whole situation.

She has another reconstructive operation August 12th and we'll go from there...

G

The Ugly Truth!

I have really been struggling lately emotionally, which I know is a side effect to the tamoxifen, which is the hormone therapy. It blocks the estrogen in my body, but something has to change. I did talk with Dr Nibley today and he is changing my anti-depressant and Monday I am going in for blood work to look at my thyroid and other things.

I just feel so numb, I don't care about anything, cry over anything and everything, big old mood swings, sleep all the time, no energy and when I do exercise and try to focus and eat healthy it is so consuming and draining that I can't seem to do anything else. I have also gained 20 lbs, since taking the tamox, which I know almost all women who take it gain weight. And for me it is frustrating because I don't have the energy I need to get back into shape. I'm not even sure if I can lose weight taking this pill.

I know I haven't read up on hormone therapy since last year, so over the weekend I need to see what I can do to change the things going on. The hardest part is facing people, everyone always wants to know how I'm doing and they think I'm so brave and courageous, I told Gary it's just so emotionally draining because I feel like I am 'Faking Life.' When someone asks, "How are you?" I want to say, "Oh well, I feel like S...!" Of course I can't really tell people that, and what I am dealing with right now is so much harder than chemo or radiation. They were physical things and this is all emotional. Just to get my day going, run errands, smile at people... I come home and need a nap! I hope that the change in my meds helps, but I did tell Gary that I cannot live like this for the 5 yrs. I'm supposed to take tamox.

Another thing that is just so painful is that I feel like I am letting so many people down, Gary, my kids, my family, friends and neighbors. And in the mean time my kids are in the middle of their lives and it isn't fair to them to have a bum mom who just sits like a bump on a log... I have tried for so long to put on a brave face but it is time to tell the ugly truth! I know it is going to take some time and I recognize that.

I also feel like my whole family has been in crisis mode for the last year and a half and none of us know how to get out of that and back to normal living. Gary and I are meeting with an LDS social services therapist in a few weeks and our boys hopefully will be able to go as well. We all kind of need a kick in the pants back into everyday living.
So there's the jist of what is going on right now, crap! I do still laugh and have good times they just seem to be few and far between. I want more good times and that is what me and my family will be focusing on over the next little while.

Love you all!!! Chandy

Doctor Visits!

Hello Friends and Family!

I went to Dr. Ferg's again on Feb. 19th, his PAC, Travis, took out the last drain! Yippee! I hate those things. I have so much anxiety when I have them attached to me. I watched as he pulled it out and it was really quite disgusting. I was amazed that there was about 18" of tubing in my stomach. He had to remove a few stitches that didn't dissolve from the incision in my stomach, as well as the steri-strips that were on my new belly button. I must admit that I love my new button. It is really a cute little thing! Everything is healing really well, except the radiated breast. This is normal it can take twice as long to heal compared to the left breast. It is still bruised all over and the incision still has some scabbing and stitches. It will heal and look just as good as the other side.

I can now start stretching and doing my arm exercises that I had to do back when I had my mastectomy. I need to do these in order to get my range of motion back. I still can really feel the scar tissue under my right arm. It is super tight and hurts when I do my stretches, but I need to keep doing them...I remind myself that at times like this that I gave cancer the finger and if I have a few lingering pains I can get over them because I won!!!!

I won't have total range of motion back again but I'll be close. I can also start to try and stand up straight and lay down flat. This is not as easy that tummy scar hurts, I mean it really hurts to stand straight. I don't think the hunched over granny look is really that bad, maybe I'll keep that look? Just kidding, I hope I eventually stand tall and I will it is just going to take a little longer. I still have trouble standing for any length of time and that too will get better with time. Cody and Brett are both taller than me now so I am trying to stretch taller so Dusty and Matt won't pass me sooner than when they are really suppose to. I am still doing my daily walks and that always feels good to get out and get some fresh air and stretch my legs.

I am off all pain meds and I usually am pain free unless I am up and about for a long period of time. I can feel the internal stitches that are still healing. These will take a few more weeks to heal completely. My next doctor appt is at my 6 weeks post surgery the middle of March.

I had an appt with Dr. Nibley, my oncologist this past Wednesday. I don't sleep well the night before this appt. I am always nervous he is going to want me to get additional cancer tests because of something suspicious he finds during my check up. Thankfully the check up went well. I did have to get another infusion of Zometa. This is the bone cancer drug that scientists have linked to stopping the recurrence of breast cancer. I get the infusion twice a year for 5 years. It's not to bad it takes about 20 minutes. However this time I went back to the chemo room to get it, they couldn't find a good vein in my left arm. Two different nurses tried to find one. They poked me several times and each time they fish the needle around my arm trying to get the vein. Ouch! Yes I had to try to keep myself calm. I have never been a big fan of needles, who is, and my poor left arm is just getting poked to death. The more you use a vein the harder it is to use that vein the next time. The nurse thought it was so hard this time because I had surgery and sometimes when you lose a lot of blood it can take several weeks to get back to a normal blood supply pumping through your veins. It took a half an hour to find the vein! In the end they found one and I got the infusion. I will feel tired and my bones will ache for a few days and I'll be fine.

On Thursday night my left arm started to bother me. I couldn't move it and I my fingers were going numb. I didn't sleep well that night, but by the next morning it felt a lot better. G thinks that they probably nicked a nerve while they were fishing for a vein. Hope so I don't need any more complications.

I was watching a tv show about 9/11 and an interesting comment was made. This man said that out of the horrible and devastating tragedy, came the best thing he ever saw. He saw and witnessed the love, compassion and hundreds of selfless acts from so many people. He met people who didn't even know him that were willing to give him anything he needed because he was in need. That describes so well the way I feel about my cancer. It has been so scary and devastating. I have felt that fear and endless worry about what is going to happen. But on the other end of the spectrum I have witnessed so many things that I don't know I would have if I never was diagnosed. I really believe that most human beings are Christ like. You might not see that Christ like love and service until you are in a crisis. I think this is why we are given trials in our lives. Not only to learn ourselves but for others to give of themselves to those who are in need. Whether you are in a crisis or know someone who is, there is always something you can do to help out and better those who are around you. That is what Jesus Christ would want us to do.

I love you all and will never forget the so many wonderful things you have done for me and my family! Hugs and kisses....Chandy

Wow! What a Surgery!

Ok The pics are first I can't figure out how to move them. Here are all of my drains. I felt loaded and ready to throw a grenade!


Here is my inscision...from hip to hip!!

This is the $40,000 tissue oximeter that IMC is doing a trial study with.



All of my lovely machines and bags of fluids that I was attached to


This monitor on my ear was for oxygen. The one they usually use on your finger didn't work because of my nails, so this beauty hung from my ear for a few days!


My first breakfast! I was starving...


Me and my mommy!

Me and my sissy Angie
So I went into the hospital at 5:30 am on Monday morning, Feb. 1st. I was surprised at how calm I was. Maybe it was because I have done this so many times before, because G was there with me, or I think it was because G, my dad, brothers and bro-in-laws gave me a priesthood blessing the night before. Up to that point since the surgery had been scheduled, I had been very nervous. I kept thinking that I have gone to "heck and back" and it would really stink if I were to die now. Of course you always think the worst thoughts and I especially worry about G and our boys and what would they really do if the worst happened to me? I got all registered and my surgery time was for 7:30. So while we waited G and I tried to relax and not think to much about what a long day lay ahead of us.

The pain that I have had in my radiated breast felt like a burning hot curling iron pushing on the implant. It was a constant pain that was sometimes so bad that the only way to relieve the pain was to put a hot pad on my chest. I was looking forward to this pain going away but not excited about the length of the surgery and what the next week was going to be like. Dr. Ferguson came in around quarter to 7 and needed to mark up my body and take pictures...lovely! He starts by marking my collar bone, middle line down my chest and my hips. These are used to make sure everything lines up correctly. Then he marks where he will cut on the stomach and chest. While he is doing this G asks if he will change my belly button. I didn't think he would cut it off but he needed to use the skin above and below my button so he told me I could decide what I wanted my new belly button to look like. G wanted me to have a big ugly outie. My dad thought it would be fun if I had Dr. Ferguson give me two belly buttons. Great conversation at parties! I liked the one I had before so I told him to make the new one like the old.

G was ushered out of the room and I was on my way. I'm still a little nervous about coming out of the surgery because of the anxiety attack I had after my mastectomy and the anesthesiologist was a new guy who I hadn't met before. I let him know what worked best for me and felt much better about it. The nurse leaves me in the hallway just outside the operating room and it is always interesting to see all the medical staff coming and going. Dr. Ferguson asked if I brought my ipod so they could listen to my music but I left it with G. They always ask what they are operating on so they can all confirm the procedure. Once they get me into the room it is all business. I move onto the operating table and within a few seconds I was in "lala land!"

The next thing I remember was coming out of the surgery in intensive care and being really irritated. The inflatable leg massager things they had on my legs were driving me nuts and they had an oxygen mask on me that drove me insane. I remember continually pulling it off and a very patient nurse putting it back on and telling me that it had to stay.

I found out a little later that the surgery was about an hour or so longer than they expected because they dug between the cartilage in my upper rib cage to find good veins to use for the transplanted tissue and my veins were good on my non-radiated side but they had a lot more "branches" off of them then people typically have. That resulted in a little more work under a microscope for Dr. Ferguson. He said the veins on my radiated side would just kind of disintegrate when he touched them. Thankfully he was able to get it all buttoned up and he felt good about how things went. Total time in surgery was about 11 hours!!!

G came to visit me in the intensive care at about 9:30pm after having waited all day. It was an incredibly long day for him in an uncomfortable chair in a waiting room. I was so happy to see him. He massaged my legs to help with those dang inflatable things and calmed me down. He said that I was all puffed up. My face was red and my skin looked chapped. We found out later that it is common for that to happen after such a long surgery.

They wouldn't allow him to stay longer than 11pm while I was in ICU so he took off about then.

I continued to feel better as the days passed. I was in ICU until about 7pm on Tuesday night and it was so nice to get in a room and get settled. It is always so nice to get visitors. My boys were able to come and see me then and I was glad to see their faces. It was obvious that they were all pretty concerned and I hoped it help them to see that I was doing ok.

They had installed 6 drains! With them pinned around me it reminded me of a soldier with a belt full of grenades. Two drains on each breast and two in my lower stomach. I was attached to many many things...Oxygen, for some reason I was having a hard time keeping my Oxygen level above 90%, the alarm I was attached too continually went off. I also had a catheter...yucky. I had 5 heart monitors attached that they removed just after the surgery. Three on my chest and 2 on my legs. In my IV I was getting saline, antibiotics and I had a wonderful little "Pain Button" that I could push every 15 minutes and it would give me a shot of pain meds. I also had a new machine that IMC is using in a trial test called a Tissue Oximeter. There was a monitor stitched into each breast on the new tissue and this machine would measure the flow of oxygen in the newly attached blood vessels. They use this machine to see if my body accepts the new tissue. Before they had this machine they had to use sonar, which is sound and it was not as successful. The PA-C told us that this machine has already saved 2 patients with new transplanted tissues. This cute little blue machine, cost a whopping $40,000!!! Below is a picture of the machine. The oxygen levels needed to stay above 40% on each side and the lowest mine ever went was 52%.

On Wednesday afternoon I was finally able to walk around a little bit. It felt great to be up but it was a pain to drag along so many machines and cords. Travis, Dr. Ferguson's PA-C asked me to walk 4 times around the nurses station and I ended up doing 6 laps. The nurses named me "The Trooper." Later that afternoon I got the catheter removed which was very nice. I hope to never experience that again...I won't give any gory details! G stayed over the night which was great because every time I had to get up to go to the bathroom always took a few minutes to unlatch myself from all my machines and then drag along the IV pole.

Thursday was a good day. I must say thank you to all my family and friends who came to visit. When I take pain meds I am always groggy and it is hard to read and concentrate, so I can't really read or watch TV. Thanks to my many visitors I had lots of entertainment. Dr. F came to check on me and told me that I would be able to go home on Friday. So throughout the day they started to take all the things attached off. They finally figured out why I was having so many alarms go off on my oxygen...my fake fingernails. The nurse put the monitor on my toe and it still wouldn't register my oxygen so it ended up on my ear lobe. The tissue oximeter that was stitched to my breasts was removed by Travis. When he came in to do it, my GG was there visiting, she is my maternal Grandma. When Travis removed the bra and padding my GG said, "Wow are those new boobs K's?" We all busted up laughing even Travis. Of course they are not size K's and Travis informed GG that it would take a whole lot more tissue if I wanted breasts that big. No thanks, but it gave us all a giggle!!

My mom stayed with me over night she was concerned because the nurses were so short staffed that several hours passed and I didn't see a nurse until later that night when I called for some more pain meds. My Mom is the best nurse I could ever ask for. She took excellent care of me. When the time comes for someone to take care of her, I will be the first one in line. When you are in the care of so many others and completely helpless you lose all of your dignity. It was nice that it was my mom and G that had to help me with things like going to the bathroom and showering me. Thanks guys.

Friday morning I was all set to go and just before I left I took some more pain meds. My mom was taking me home. Because I was leaving earlier than expected, G had to rush home to pick up so I would be happy to see a clean home! On the drive home I got super nausea's. I almost made it home. Just as my mom turned onto Northridge I opened the car door and threw up all of my breakfast. Yuck! It had to be the most painful in all of my life because of all the stitches I had in my stomach and chest. I did feel much better and got home and slept it off for several hours.

I am so happy to say that I survived the operation and the hospital stay! I am so glad to be home. I have a walker that old people use to help support me over the next couple of weeks. I cannot stand up straight for 3 weeks after surgery. It is very difficult to stand at all but I am comfortable sitting down. I also can't lay flat or on my sides or stomach. I have to prop myself up so that my stomach doesn't stretch out. The first time I went on a walk outside around our circle, our 10 year old neighbor was outside. He said, "Hi," and then ran in his house to tell his mom that Gary is outside walking around the circle with either Chandy or her mom. He couldn't tell because I was pushing the little old walker. So yes, I am the neighborhood old lady for the time being. I have had several neighbors come out to say Hi on my daily walks and every time they all have to comment on the "Old Lady" Walker. I have to admit that it does look funny but there is no way I could stand or walk very long without it.

We live in such a wonderful ward. They have brought over dinner all last week and they are bringing them over all next week. Every time they come over they all are concerned with how I am feeling and if there is anything else they can do to help out our family. There are several lessons I have learned over this trial and of course you do a lot of thinking when you are down and home bound. The first lesson that I have learned is that of compassion. I have been so overcome with fear several times over the last 16 months and it never lasts very long before someone shows me compassion. I am completely amazed at the many many people who have told me they love me and my family. It doesn't matter how many times you hear it, it always gives me a warm jolt to my spirit.

I went to the doctor this past Friday, and had 5 of the 6 drains removed. If you have never had a drain from a surgery I hope you never will. The pain you experience is like no other. There is 12 inches of draining tubes inside of me...for each drain. The first thing they do is remove the stitches that hold the tube in place. Next I hold onto G's hand for dear life as Travis pulled and pulled the drain out. Thankfully the 2 on each breast he pulled out at the same time. I cannot describe what it even feels like, something like a snake unwinding in your chest and it burns the whole time it is coming out my side. After Travis was done with the drains he removed the stitches from my new belly button. It looks so cute! While he was doing this I could feel blood dripping down my right side. When I sat up I had completely bleed through the gauze and through the gown and there was even some blood on the table. When he removed the gauze I was bleeding pretty heavily from one of the drain holes. It took him about 2 minutes to get the bleeding under control. I am now back in my compression bra and packed with gauze. I have to leave it all on for 48 hours. Thankfully I only have 1 drain left and it should come out by next Friday. Dr. F said that I am healing wonderfully. I still need to take it easy and cannot stand straight for another week or so. Other things that I cannot do...I can't put my arms above my head, can't lift more than 5 pounds, no exercising except my daily walks. Oh I almost forgot to tell you that everyday I have to strip the drain lines and dump out the contents of each drain and then record the cc's of each drain. G used to always do this and now Dusty and Matt can even help me do it. They say that they like taking care of their mom! Oh how sweet my little boys are!

I will post again after my doc appt Friday. Hugs and Kisses!