Sunday, April 15, 2012

March Madness into April Showers

I can't believe that's its been almost 2 months since I posted last.  A lot has happened and I'm not sure where to start - I feel like I say this every time LOL
So Russ started the case study drug TKI258 at end of February and by the first week of March, he was in the emergency room with a splitting headache.  He woke up vomiting around 5 AM and was complaining of an extreme headache - the first thing I thought of was if it was a stroke or if he had passed out and hit his head or something.  He always has headaches but it's usually because of his high blood pressure, so he takes his meds and he's normally okay, but this time it was different - MUCH DIFFERENT.  He said it was radiating from the back of his head to the front but only on 1 side.  I immediately call his mom to see what I should do (she's an RN) and Russ is just holding his head rocking back and forth moaning and crying (he NEVER cries) - she said to immediately take him in and that she was sending Mike over to watch the kids while I took Russ in.  So by this point, it's 6 AM and I'm running around the house like a mad woman trying to gather all of him meds, Huntsman conacts, study med info, etc.  Then trying to find clothes for both of us and wake up Haley to let her know what's going on.  We were out the door by 6:08 AM (why I remember the time I don't know) and to IMC by about 6:15 AM.  They take his blood pressure and it's at 138/100 - NOT okay.  They immediately take him back to a room and order a head CT scan (remember he just had one the week before and it was clean) and then we didn't see the doc again for about 45 min due to another emergency and Russ started stablizing.  My friend Amy showed up and sat with me and that helped calm my nerves a ton!!  Then a nurse came and gave him some Zofran and it knocked him out cold.  So it all turned out to be okay, but still sooooo scary!!  So I took him home and we chilled out the rest of the day.  The next day he had an appt with his pain clinic doc and when they took his blood pressure, it was still at 138/99, which is still too high - I just don't get it!!  I immediately call the nurse over his case study and she wants to see him the next day to adjust his meds.  We go the next day and all we get is a run around and they tell him to stop taking his case study meds until his blood pressure gets under control.  Oh and he ended up in acute care TWICE during this period and they still refused to admit him because his blood pressure was normal when he would go in - it was at night that it would spike - every darn time - but they refused to believe me.  They advised us to buy a blood pressure cuff, so we did and I started a log of his blood pressure and started emailing it to the nurse.  I think that's when they started to pay attention because that's when they finally adjusted his meds, which seemed to help - we thought........
Man I really struggled at this point - I felt like I was melting down psychologically - none of the docs knew what to do and there was literally nothing I could do.  Thank goodness for good friends who took me out to get away from it all and check on me every day.
So after he was 'stable' for a week, we decided to have him start back up on the case study meds but this time at a lower dose AND it was in capsule form instead of tablet and we were told that it seemed to be 'more tolerable' and 'lower side effects', so we thought okay let's give this ONE MORE TRY.......oh boy we couldn't have been more wrong.....
He started about mid March and was good the first 2 days, then on the 3rd about 8 PM, Russ started vomiting and had major shortness of breath.  This time I took his blood pressure and it was sky high - mainly because of his pain levels - he was complaining that his abdomen had sharp pains and that he just wanted to go lay down.  So when he was done vomiting, I took him to the bedroom and then everything went downhill.  He was sitting on the bed and leaning his head on my stomach.  He said that he thought he was going to pass out - I yelled at Haley to grab me a damp cold towel just in case so I could snap him out of it and also yelling at her to grab all of his pills and his colostomy pack for the emergency room.  He then started saying that his legs were going numb.....then the first thought I had was that if he collapsed I couldn't lift him by myself, so I called my neighbor Bryan over and had him help me hold Russ up while I called 911.  Russ was hyperventilating and sweating profusely and the rest of his body proceeded to go numb and his fingers went stiff and that scared the crap out of both of us.....I thought for sure he was either having a heart attack or stroke........I thought it was the end.  In the meantime I had also talked to his dad Mike and told him to come over to take care of the girls and I could just hear Audra and Taylor crying in the background during this.....I was shaking and trying to talk to the 911 operator and keep it together....oh and keep Russ coherent and comfortable.  Just then the paramedics showed up and started to ask about his medical history and writing down all of his meds (all of which I have dates and meds memorized) and taking his vitals.  Bryan then took the girls across the street to his house thank goodness....Mike stayed with me and Russ while the paramedics were finishing their evaluation.  They packed up Russ and got him out to the ambulance while I was trying to get his bag ready and for some reason I couldn't find my freaking shoes!!! I was so mad about it....I ended up wearing some weird shoes, not sure why I remember this either then I get outside to the ambulance and they were just loading him was dark and there are these bright lights on the ambulance that illuminate a halo around it, so everything else looks like shadows....I remember seeing a lot of shadows - later I found out that it was all of my neighbors coming out to see if everything was okay.....I have such great neighbors!!!  I rode in the front of the ambulance and they were trying to hook Russ up to an IV, which it took 4 pokes since he was so dehydrated.  I remember the driver was so nice and was so calm - why was he so freaking calm when I was such a mess?!?!  We get to the ER and he's still in a ton of pain and we get to a room and they give him some pain meds and anxiety/anti-nausea meds and he started calming down.  It turns out that they think he had an abdominal blockage and that it had passed on it's own.  They also think it's from a previous abdominal surgery where the scar tissue had wrapped itself around the intestine - they did an abdominal CT scan and everything looked normal.  At this point, we knew that it was the end of the road with any experimental drugs or anything else for this matter.  He has been through hell and back and is still so strong.  At this point, the bishop came and gave Russ a blessing and then my friend Jackie came and sat with me for a couple of hours.  We were released at about 4 AM and Mike came and picked us up and took us home.  Mike and Irene kept the girls until about 1 PM and brought them home.  We all just hung out and spent the rest of the day as a family - so many people came by and visited and let us know how much they loved us - it really meant a lot...we are so lucky!!  On March 27th, Russ went into Dr. Sharma's office and signed the official paperwork to end the case study and to go do an ECG (echocardiogram) - which they didn't tell us that he needed to do - shocking.  On March 30th, Russ was scheduled to have two small tumors on his chest removed in clinic, so we show up and the surgeon looks at him and she says that they don't want to touch one of tumors due to it being so close to his port and they didn't want to get the port infected because it's directly connected into his heart.  The other tumor about 8 inches below his port was under his muscle and she absolutely didn't want to do it with a local anesthetic and that she would need to put him under....but that she couldn't do it until the next week!!  I swear.....if one more doctor doesn't communicate with the other I'm going to lose it!!  So here we are...another week lost.  So we show up on April 5th and getting him prepped, and the anesthesiologist walks in and she proceeds to tell us that she didn't want to put him under because his ECG showed that his heart 'isn't pumping like a 36 year old heart should' - we were in SHOCK - 1 month previous when he had an ECG, it was completely NORMAL......with all of the trauma he had had in only 1 month, his heart was actually weakened!!  The anesthesiologist said that she'll numb the area but that she would need to keep him awake but that the meds she would give him wouldn't make him what the heck let's do it.....what else do you do???  The surgeon was super quick and got him in and out of there in about 45 minutes.  Russ was super anxious to get home so he sped through post surgery and we were on our way home!!  Then Russ pulls another shocker and says....let's go out to lunch....I looked at him like he had lost his mind and said NO you need to go home to rest.  He insisted that he wanted to go to The Cheesecake Factory, so I gave in and we went to lunch.  Inbetween thae time driving and getting to the restaurant I started freaking out a little bit from processing the events of everything that had just happened from that morning......I broke down and started bawling in the booth - Russ just looked at me helpless and held my hand.  After my 5 min of insanity, we ordered and ate and talked and had some incredible cheesecake.  I almost had him talked into walking the new 'Crate and Barrel' next door but knew better and took him home.  He crashed and I took some quiet time to catch up on some work.  My parents had kept the kids the night before and were on their way to drop them off at home.  They even took them Easter dress shopping!!  I will have to post pics soon - once I figure out how to get them off my new camera!  The next weekend was Easter and we went to go listen to Russ's parents talk in church and then went to our ward and Taylor sang with her Activities Days group.  We then ditched the girls at church and went home - Russ was pretty spent at this point.  I went and picked up the girls when church was done and then had some nice quality time at home and then went to Russ's parents house for Easter dinner.  The kids had an Easter egg hunt after and it was so much fun - the weather was Gorgeous!!  What a nice day :)
Then on Tuesday - Taylor and Audra both had fevers - so I took them into Instacare (I do this every time now due to Russ's immune system and if he catches anything simple then it could kill him) - they checked for strep, flu and pneumonia - the strep was negative and the flu test can take 24-48 hours (which also turned up negative) and gave Audra a chest xray just to make sure there was no pneumonia.  I stayed home Tuesday and Wednesday and by Wednesday night I was starting to feel icky.  I just wrote it off as allergies and went to bed.  I woke up and felt horrible, but because I had missed 2 days of work, I needed to go in to get some paperwork done.  Everyone was telling me to go home, so I stayed for about 6 hours and went home.  Friday was bad, and Saturday morning was worse.  Finally last night, I started to feel some relief and this morning my ears popped and I can breathe out of 1 side of my nose....finally some progress!!  Audra is also better.  Poor Taylor is still suffering and she has a weird white bump on the white of her eye - she says it doesn't hurt, so I'm just keeping it lubricated and keeping a cold damp cloth on it - its seeming to get better.  I'm just hoping her fevers go away today so she can go to school tomorrow.  Russ is doing well and even went to work 3 days this week!! Now only if his short term disability paperwork can be figured out so he can get his 2 missing paychecks.............................
On a positive note, we are going to Disneyland soon!!  We are going for 6 days and everything is planned out and organized, we are so excited!!  I don't think we've ever taken a family trip just the 5 of us and I'm sure it will be memorable....I just hope it's not the only one.....and if it is, then it will rock.
I want to make sure that I express how much we love and appreciate everyone.  We sincerely think that the only reason Russ is still with us is because of all the prayers said on his behalf.  He has already beaten the odds by several months and not sure how much time is left.  I dont know how we could have made it through the past couple of months without our friends and family.....I hope I can make it up to all of you some day.

Love to you all -

Monday, February 20, 2012

Let the tests begin..........

Hello again......I thought I better give everyone an update on what's new.
Russ is starting his preliminary screening (EKG, CT Scans, Blood work, release forms, etc) on Wednesday.....FINALLY!!!  It took about a week to hear from our case study coordinator and then scheduled the testing date and after that changed 2 times, we finally are going in.  The tests will take all day - so I will have to give an update to everyone on how they went and next steps on Thursday.  Once he's cleared on the preliminary tests, then the real fun begins.  We go up to Huntsman's almost every day for 3 weeks - some days are longer than others due to the amount of blood they want to take and whatever test they want to run on specific days, so that will be TONS of fun.......
Sorry for the sarcastic tone to all of this, just trying to be patient and postive and not thinking about how stressful this time will be.  All we can HOPE for is that this will hopefully give him more time with us all.  We already have accepted the fact that there will never be a cure for this.

***BIG NEWS***  Russ finally joined the 20th century and got a Android smartphone and get this.........reactivated his Facebook account!!!!  I was just as shocked as the rest of you, so now you can actually contact him and he replies pretty fast.....that was so 20 seconds ago.......LOL

Also, I've been working on making video slideshows of our vacations over the past year, so those should start popping up soon too!!  In fact I'll try posting our Hawaii video soon.

Talk to you again on Thursday....have a great week!!


P.S.  Audra left this on the counter for me this past week and it was just too cute to not share!!

Monday, January 30, 2012

Case Studies and Family Pics!!!

Here I am again - actually keeping my promise of updating after Russ's last appointment, so here it goes......
We met with Dr. Sharma and his team of staff and he presented 2 different case studies that Russ can possibly participate in.  It's hard to explain how they work other than he's a human guinea pig and has to be monitored almost daily by taking blood from him and doing routine scans.  Which in all actuality isn't a bad thing, just lots of visits up to Huntsman Cancer Institute.  They're also sending his last biopsy to a lab in Phoenix where they can analyze it for gene and chromosone tracers, etc.  I'm actually very excited for this part....I feel like this is something the doctors should have done from the very beginning!!!  So now we are researching the 2 different case studies and choosing one and then start the eligiblity process then see if they will let him do it (kind of backwards I know).

In other GREAT news, our family pictures have finally arrived!!!!!
Here are a couple of sneak peeks:

Haley, Audra, and Taylor

Say cheese!!!

Andy, Josh, Liz, Lauren, Jim, Erik, Kristin, Dan

This was so much fun to get together and finally get full family group pics.  Our photographer was amazing!! 
I'll update again when we've decided on what we're doing.
Love you all!!


Sunday, January 29, 2012

From an absolutely hectic week to a quiet Sunday morning....FINALLY!!

I woke up in a panic at 6 AM over something I forgot to include in a packet of info for my boss (he was picking some papers up from me that I left on my porch - pretty common practice since he's flying all over the place all the time and my house is on the way to the airport), so I hop (dragged my butt) out of bed and go grab my laptop and start printing 3 reports hoping to catch him before he left.  And to my uncanny luck, the printouts were done and he had just barely come and left.....drat!!!  I ended up emailing them to him and he's printing biggie. 

Sooooooo here I am WIDE AWAKE at 6:30 AM on a Sunday morning wondering what to do.  So I poured myself some cereal and start reading/surfing my RSS feeds of my FAV blogs that I love to catch up on and get inspiration from.  Can I just tell you how much I love being able to do this in complete silence?!?  Things you do for fun when you have 3 kids, a full time job and a sick hubby :)

Anyways, while I was doing this I was immediately reminded of a story that my father-in-law sent me - don't know why I thought of it, but it is by far one of my favorite stories and I hope one of you out there will enjoy it too.  It just really sums up why bad things happen to good of my HUGE issues right now if you couldn't tell :)

Here is a quote from it if you don't want to go read it - I'm putting a link to it after the quote from Hugh B. Brown:

"You sometimes wonder whether the Lord really knows what he ought to do with you. You sometimes wonder if you know better than he does about what you ought to do and ought to become.
I was living up in Canada. I had purchased a farm. It was run-down. I went out one morning and saw a currant bush. It had grown up over six feet high. It was going all to wood. There were no blossoms and no currants. I was raised on a fruit farm in Salt Lake before we went to Canada, and I knew what ought to happen to that currant bush. So I got some pruning shears and went after it, and I cut it down, and pruned it, and clipped it back until there was nothing left but a little clump of stumps. It was just coming daylight, and I thought I saw on top of each of these little stumps what appeared to be a tear, and I thought the currant bush was crying. I was kind of simpleminded (and I haven’t entirely gotten over it), and I looked at it, and smiled, and said, “What are you crying about?” You know, I thought I heard that currant bush talk. And I thought I heard it say this: “How could you do this to me? I was making such wonderful growth. I was almost as big as the shade tree and the fruit tree that are inside the fence, and now you have cut me down. Every plant in the garden will look down on me, because I didn’t make what I should have made. How could you do this to me? I thought you were the gardener here.” That’s what I thought I heard the currant bush say, and I thought it so much that I answered. I said, “Look, little currant bush, I am the gardener here, and I know what I want you to be. I didn’t intend you to be a fruit tree or a shade tree. I want you to be a currant bush, and some day, little currant bush, when you are laden with fruit, you are going to say, ‘Thank you, Mr. Gardener, for loving me enough to cut me down, for caring enough about me to hurt me. Thank you, Mr. Gardener.’”

He goes on to tell of a hardship in his life......

I wanted to tell you that oft-repeated story because there are many of you who are going to have some very difficult experiences: disappointment, heartbreak, bereavement, defeat. You are going to be tested and tried to prove what you are made of. I just want you to know that if you don’t get what you think you ought to get, remember, “God is the gardener here. He knows what he wants you to be.” Submit yourselves to his will. Be worthy of his blessings, and you will get his blessings."

Now for some updates on Russ - 2 announcements:

1.  Russ has an appointment up at the Huntsman Cancer Institute tomorrow at 1 PM (they've moved it 3 times now.....hopefully the 3rd time's the charm) - we hope that they can offer some kind of case study or experimental option.  Russ has also been reaching out to other cancer centers across the country, so we'll see if any of that pans out.

2.  Russ has been asked to baptize my best friend's niece next Saturday!! I'm so excited I can hardly stand it!!  This little girl has been working so hard to get to this point and I'm so honored they asked Russ to do the baptism!!  I'll be sure to post pics!!  After that, Taylor and Audra are singing in the children's choir for Stake Conference that'll be a busy day!!

As far as the girls go, they're doing great.....definitely not a lack of things to do for them!

Haley has Young Women activities every week and usually hangs out with friends on the weekends.  She had her 'Viking Showcase' Wednesday night.  I have videos of her Symphony Orchestra playing that I filmed with my new camera I got for Christmas, but haven't figured out how to save them and edit them yet, so I'll have to post it later.   I feel bad that I don't have a pic of her this week, so I'll post one from when we went to Classic Fun Center last week (she's gonna kill me!):

Taylor went on a school ski trip last Tuesday and had a BLAST: 

Taylor is always playing...I mean 'hanging out' (Taylor hates it when I call it with her friends and went to a Cheer/Dance camp yesterday.  We've also been hard at work on her Science Project of making your own Geodes in empty egg shells:

 Audra went to a birthday party at All Star Lanes yesterday for a little girl in her class.  She loves being in 1st grade now and making all sorts of new friends:

Now time to get the girls ready for church (I love that it's at 11 AM now!!) and get dinner in the oven so it's ready to eat when we get home.....YUM!!

Love you all, thanks for reading and I will update again when I know more with Russ after the appointment tomorrow AND we're supposed to be emailed our new family pics we had done over Christmas...can't wait to see them!!

Until next time..........


Saturday, January 7, 2012

Next steps.......

Wow, what a day it's been........don't exactly know where to start, so I'll start from the beginning.

Things started out the same, getting the kids ready for school, feeding them breakfast, getting them out the door to the bus.  I stayed home and worked today so I could take Russ to his doc appt to review his latest CT Scan at 2, so I did my usual of answering emails and fielding phone calls on various work subjects, the norm.  I then decided to go run some errands and while I was out, dropped in at the hospital where my neighbor/friend had surgery the day before.  He was doing really well and was happy to see me as was his family.  It was a great visit and I was in good spirits.  Love those people!! 

I then picked up some lunch for Russ and I and came home to eat before his appt.  I was greeted by my beautiful girls whom had just gotten home from early day out at school.  Taylor was being her silly self and had tucked her scarf into her pants and acting like they were suspenders, she cracks me up!!
We got to the doc appt on time and did the normal pre-cursor stuff like his blood pressure, temp, etc and was guided to the exam room where we waited patiently for Dr. Litton.

When he finally came in, he had the CT Scan results in his hands and then had to leave for a moment to answer a phone call.  He came back in and promptly said that the CT Scan results weren't good and that his tumors had grown 'insignificantly'.  We were puzzled by what that meant and he pointed out that the liver lesion had increased from 9 mm to 15 mm, which I immediately reacted and said that it had doubled in size since the last scan when the chemo was supposed to halt the growth.  He again repeated that all of it was insignificant (small) growth and that due to his very uncomfortable side effects to chemo (he had to have 3 units of blood transfused the week before Christmas and was constantly dehydrated and losing blood) that the risks outweighed the benefits and that continuing down the same path of the chemo he was on was not a good choice since it wasn't working, so just to sum up the journey we've been on for treatments so far are:

4 rounds of chemo (Adria/Ifosfomide) from Sept 2010 to Dec 2010
5 weeks of radiation to the pelvis (Jan 2011 to Feb 2011)
Surgery (14" incision from sternum to pelvis) to try and remove the main tumor - only to find out that not only had it spread to the lungs and that they could not remove the pelvic tumor, but that there was also lesions on his liver (tiny sores or tumors) - the surgeon then told me that he only had months to live.  He was in the hospital for 7 days and 6 weeks of recovery.
We had a whirlwind Spring, Summer and Fall - we did so much and had so much fun!!
In the Fall of 2011, he started having new pains in his diaphragm that shot up into his shoulders and chin - we later found out that it was 'referred pain' from a new lesion on the liver - and new smaller tumors popping up around his port, chest and shoulder.
Then came 3 more rounds of a different chemo (Gemzar/Taxotere)

To sum it up, he's been in treatment for 1.5 years with no success.  The doc couldn't even give a recommended suggestion.  Instead he gave us 3 options:

1.  Do nothing and wait for problems to arise and re-evaluate the next step.
2.  See if he would be eligible for an experimental chemo
3.  Try a clinical trial up at Huntsman with Dr. Sharma - also all experimental oral chemo drugs.

We basically feel like they're throwing up their hands and giving up.  Because Russ's type of cancer is so rare, no one knows what to do when it resists all of the traditional drugs.  Russ and I didn't say a word to each other until we got into the car.  I then started bawling and he and I talked about it and that we should make the best out of the time we had left.  We will go to the appointment with Dr. Sharma whenever that happens and see if it's something we want to do.

The rest of day was a blur, we visited with his parents, I didn't call anyone to talk about it because I didn't want to bawl.  We went home and started making dinner and my good friend Jill texted me asking me how I was doing and I told her what was going on.....she is such a sweetie and is genuinely worried about our family.  I then talked to another good friend Melinda which we don't get to touch base too often, but when we do, it's all good.  Maybe I will start calling family and friends tomorrow....not sure???

I will keep trying to update this blog at least 2-3 times per week.  It's kind of therapeutic actually........

Until next time.........


Wednesday, January 4, 2012

Life makes you see.....

So as if I'm not going through enough with my hubby being diagnosed with terminal cancer and fighting it for the past 1.5 years and having one of the most stressful jobs of my entire life.......I'm thrown another curveball.  One of my very good friends has to have surgery tomorrow to basically save his life.  This brings back so many hard, terrifying, horrible feelings and memories of when my hubby had to have surgery last March only to receive such horrible news from it, that I naturally fear the worst for my friend.  Then I stop.....take a deep breath....and really analyze why I'm feeling this way and that I have SO much to be grateful for!!  I've learned so much and compiled what life makes you *SEE* - sometimes for the first time.  Enjoy :)

Life makes you see........

How important the family unit is.
How much love surrounds you in hard times from friends, family and even complete strangers - you are never alone.
How blessed you are to get to spend each second upon this Earth.
How beautiful your children are and that you GET the opportunity to raise them.
How each second is precious and to make each moment count.
How important it is to have best *girl* friends.

There is no way I could have gotten through all of this without my family.  They are my rocks of foundation and my friends are my beacons of light that guide me through dark times.  Russ and I have become so much closer due to these experiences and I will be forever grateful for these moments.

Until next time...........


Monday, January 2, 2012

Bring it on 2012

Well, I am in 20 freaking 12. Boy am I glad that 2011 is behind me! So much went on last year that when I have been looking back, I'm in shock at how I actually survived, let alone lived it all. It is my New Year's resolution to start blogging at least twice a week....not only to document my life but to start a new hobby and maybe it will help me stay a little more sane.

Cheers to 2012.....see you again soon!