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.........

Lizzie