And the fun just keeps rolling in...

I'd really like to post something exciting, positive and new.  I'll do a little bit of that at the end of the post, but for now we want to pass along some of the fun we've had since the last post.

The day after the last post Laurie had an MRI scheduled at Stanford to find out what was causing the sluggish blood flow in her left leg that was shown by the ultrasound a couple of weeks prior.  We went in for the MRI and while waiting for a disk of the images from the scan we received a call from Dr. Fisher's office telling us to go directly to the ER.  It turns out that Laurie had a blood clot from around her left knee up to her groin.   I made the error of not waiting for the disk and then heading to the ER at El Camino.  We went to the Stanford ER which was backed up and also run by committee.

Dr. Ghanouni called us while we were in the waiting room and eventually came over to meet us in the outer waiting room of the ER.  He had read the MRI and did a comprehensive report which he provided for us.  The MRI provided lots of interesting information, but the critical part is that there is a 3 x 3 1/2 cm mass which is pressing on her iliac vein and her left ureter.  We also believe it may be pressing on a nerve.  The pressure on the iliac vein had either stopped or was slowing down the vein to a degree that the blood clot had formed.

After a couple of hours we were taken into the ER area (yes, we were in the waiting area that long) and it was decided that she needed to be admitted.  They weren't going to do anything until Friday, but they didn't want her to be away from the attentive care just in case part of the clot were to break loose.

Friday morning the strategy was decided that they would do a procedure for the blood clot and insert a venous stent where the tumor is pressing on the vein to allow normal blood flow.  This means that they also needed to break up the clot and that could mean 24 hrs on an intravenous catheter with a tPA drip infusion.  They did the procedure in the later part of the afternoon on Friday.  The good news is the clot was starting to break itself apart, but they were unable to clear the clot.  That meant that Laurie needed to be immobile and on the intravenous catheter, infusing the clot-buster drugs, until Saturday afternoon.  At that time they would go back in to remove the catheter and insert the stent.   Sunday morning they did a brief procedure where they also inserted the ureter stent to resolve severe hydronephrosis of her left kidney.  Laurie came home from the hospital early Sunday afternoon.

So what does this all mean??   

Laurie's up and walking about the house.  The 3+ days in bed set the recovery of her back muscles back a bit.  She is going through physical therapy (PT) to work on the muscles and she's walking pretty normally most of the time.  She is still having a fair amount of pain in general and we're working through balancing the right pain medications with their effects on her head (most narcotics make her dizzy, which in turn cause effects you can guess).

You'll note that we're not posting the MRI results this time.  Let's just say that there's a lot going on and her cancer has progressed to a new stage.  We've had great care and treatment all along from various different teams and organizations.  Dr. Dormady has gone through all the standard and not so standard treatments for colon cancer.  We've also used some drugs that are non-standard, but had been shown through tests to impact Laurie's specific cancer.  We've even sent her information off to a team of experts that have concluded that we have received more aggressive and progressive treatment than we would have received anywhere.  We are indeed talking to hospice people and trying to get all those things put in place so they are ready when we need them.  We do appreciate those of you who have offered additional resources.

What are we doing?  

We're working through things.  We are making sure that all our doctors are in sync with what Laurie wants.   We are seeing some of Laurie's friends who are coming out to visit.  Also, Laurie is going to go on a special tour with IWS for a full day tour of Catalina and the restoration work they are doing with the Bald Eagles. This is a special trip for Laurie as the eagle restoration and the group that watches the eagle cams have been a special support and passion for her over the last several years. I've made arrangements to ensure that Laurie has a comfortable and nice trip to Catalina without all the stops along the way.

The plane I've chartered

(possible interior, I don't have actual photos of the inside)

I'm doing what I can to get Laurie there in style.  We'll post information about our trip when it's complete.

Sometimes Life gives you lemons and sometimes it’s a gaping black hole that just drank a truck load of lemon juice.

For those of you who follow us on Facebook some of this is not new.  There are some details I’ll add here that we haven’t posted there.  Mostly details, but also some information about drugs that are out there and how they relate to Laurie’s situation.

The last couple of weeks have been just a ton of fun and adventure for us.  Laurie has been in a lot of pain due to the secondary and tertiary effects of her HIFU treatment.  A muscle in her back next to the treatment location knotted up and that caused some discomfort.  She also has had pain because the treatment caused the piriformis muscle to go tight.  That ended up pushing on her sciatic nerve (see http://www.spine-health.com/conditions/sciatica/what-piriformis-syndrome for information about this condition).  She was going to have a minor procedure a week ago Friday to inject the two muscles and begin to relieve the pain.  Physical therapy and time also seem to be helping, but they are slow progress.   When Laurie went in for the procedure they said they couldn’t do it because of her blood thinner.  They paged her oncologist at 1pm to change her blood thinner, but we never heard anything.  Late in the afternoon the doctor who did the HIFU checked in on Laurie and he then paged the oncologist.  Still no prescription by 6pm and I headed to the pharmacy in the hopes that it would show up.  It eventually showed at 6:30, but the pharmacy didn’t have any of the drug all the pharmacies except the 24x7 close at 7.  We managed to get the prescription transferred to a 24x7, but it wasn’t until almost 8 pm that I got home.

Tuesday mid-day Laurie was scheduled for a CT scan.  When she got there she was told that her creatinine level was too high and they would need to do a PET scan.  They called and talked to Dr. Fisher’s nurse Dana and told her the situation.  As of Wednesday at 4pm we hadn’t heard anything so I called Stanford to check on the status.  There was nothing in the system.  I tried to restrain myself when talking to the admin person as I realized it wasn’t her fault, but I let her know I was unhappy.  Thursday morning I received a call from someone who was covering for Dana and she said they were working on it.  The reason it wasn’t showing in the system is that the request didn’t go in until 9:30 pm Wednesday night.  I was mad….   The nurse said the PET scan would be approved and managed to find a slot mid-day Friday for the scan.  Naturally the scan wasn’t approved at the time, but somehow they managed to get it approved in the next 15 minutes.

We received the results of the scan Monday morning.  The news wasn’t good.  The existing spots were larger and there were new ones showing up.  We weren’t totally surprised, but it was worse than we expected.  There were concerns in the PET scan that there was some brain activity, but a subsequent brain MRI scan on Monday afternoon showed no abnormalities.

We asked about the new anti-PDL-1 drugs that were out there and how effective they were on Colon Cancer.  They are doing wonders for melanoma and small cell lung cancer patients.  It was even approved by the FDA on an accelerated schedule in September for melanoma.  The bad news is that colon cancer doesn’t have much of the PDL-1 in it.  They tried it on 26 people and only the first person had any success.  They are now suspicious of that one too.  So there really are no drugs for us at this point.  This was very disappointing news for us.  We thought we had another bullet to shoot at this.

We are now looking to resolve an issue with Laurie’s left leg.  It’s swollen to at least the same level as when she had her blood clot and is being very painful.  An ultrasound showed no blockages, but did indicate that a couple of the veins are sluggish.  This would explain the swelling and subsequent pain.  We now need to find out why the blood flow is not good.  We suspect a major vessel is being pushed on and need to find out what and where.  Stanford ordered an MRI to look at her left iliac vessels, but we are fighting the Med Solutions team again. I’ve had to engage my Cisco contacts again and am not getting much help from my Cigna “Champion”.

We are now moving our oncology care back to El Camino where we have a really tight relationship with the doctors and staff.  This will relieve a lot of the stress we’ve had when dealing with the medical staff.  Stanford is a huge machine and we really hate dealing with the walls and partitions in the oncology area.   Other areas we have a great responsive relationship with, but not the oncology team.  We met with Dr. Dormady on Tuesday and began establishing next steps. 

Laurie also has a marble sized node near her left clavicle that we are going to look at with the El Camino Radiation Oncologist (Dr. Sinha).  He’s great and we see him today (Wednesday) to get his assessment and hopefully setup a procedure to relieve that discomfort.

One final step we’ve taken at the suggestion of both Dr. Dormady and our family doctor (Dr. Kwok) is to begin communication with hospice.  We don’t need anything now, but they need to do an initial assessment of the house and situation so that when we do need them at some time we are ready.  Also, they have a special expertise in pain and comfort management.  We’ve had a tough time finding the right pain relievers for Laurie.  Most of them make her sick and do little to alleviate the pain.  Hopefully, hospice can assist us in finding the balance.  I’m also wrestling a bit with Cigna on determining how to get hospice.  They point to Care Centrix as the path, but Care Centrix says they don’t do that.  I’m again engaging a Cisco person to help me sort that out.

Well, that’s about it.  Unfortunately, I couldn’t induce much humor into this post beyond the title.  It’s just one big sucky situation.  We appreciate all the help and support we’ve received.  We have a neighbor couple that have been wonderful to us.  They’ve brought us food on a number of occasions and last night they walked with us as I took the dogs and Jay pushed Laurie while Jane walked their little dachshunds.  We must have been an entertaining sight. 

The PET scan report follows for those who are interested….