It’s been a ridiculously busy week!  First of all, I found out last week that I’d be going down to San Diego for the second round of SIR Spheres treatment.  That meant that I’d have to get a blood test on Wednesday, a day on which I promised my sister I’d help chaperone a field trip for her class.  Monday, I had to get up early to take my mom to her physical therapy appointment, since she had another doctor’s appointment when we usually went in the afternoon.  I spent Tuesday at an appointment for the gastrointerologist, who wants to do an endoscopy, a colonoscopy and an ultrasound as soon as possible.  He also wants me to get myself ready to take my colon out.  Thursday, I had to see my oncologist for my monthly appointment and to get my port flushed.

That’s where my day got complicated.  My doctor told me that my CEA counts were way up to 236, up from 57 last month.  That’s not to say that my cancer is back out of control or anything.  It could very well mean that the active cancer in my liver is putting out more cells than normal, or that I have new tumors in my colon.  The test also doesn’t differentiate between live CEA cells and dead ones, so that remains a possibility too.  Just to be sure, the doctor wanted to continue with my treatment on Friday, and schedule an appointment for a PET scan after I’m no longer radioactive.  After the PET scan, we’ll see what’s going on.  After the oncology appointment, I tried to get myself worked in the schedule for an ultrasound, since I’d rather just get it over with, but the hospital was busy and they said it would be at least 2-3 hours before I even got in to be seen.

So after I left the hospital, we met my grandmother for lunch, then mom, dad and myself all headed down to San Diego, since we didn’t want to leave the house at 4am the next day to get there at 6.  The beds we slept on were hard as rocks, the pillows were flatter than a sheet of paper, there was only one bathroom where the water pressure was ridiculously low, and I’d forgotten how loud my dad snores.  All in all, I think I slept very well, considering the hurdles in front of me that night.

Friday morning, I got to the hospital, and something I’ve never understood about this place is the fact that they HAVE to escort you everywhere you go inside.  IT’S A FREAKING HOSPITAL FOR CRYING OUT LOUD!  I realize that there are some people out in the world that are too stupid to read signs and follow arrows, but I am not one of them.  I’m also not the fastest walker on the planet either, so imagine my frustration when I had to slow down before running over the worlds oldest, slowest woman that served as our guide to the same room I’ve been to at least two other times.

Once inside though, it got very easy.  They put me into one of those backless gowns that everyone loves, and put me on a gurney.  I won’t go into too much detail here, but let me say that for a lazy person, a Foley catheter is an excellent way to eliminate the need to interrupt something for the bothersome task of going to the bathroom as needed.  However, I am not too lazy to avoid the pain involved in having a tube about the size of a fire hose jammed inside my ureter and then once it reaches my bladder, inflating a balloon the size of a basketball inside.  It would be funny if it weren’t true.  The even better part is that once they take it out, you can’t stand up to pee.  The urine stream is the basic pattern of a wide spray nozzle on a garden hose, and about as accurate, too.

Once we get into the surgical suite (yes, it was a suite.  I was looking for the wet bar and the hors d’ouvres when I got settled in), they clamped me onto a surgical table the width of a popsicle stick and clamped my arms down beside me.  It was so comfortable, it made me long for the hotel bed from the night before.

I wish I could say that everything went well and there were no complications at all.  However, that would be ridiculously false, as the last thing I remember was the removal of most of my body hair around my waist and the generous application of an iodine solution that started at my knees and continued to my chest.  Perhaps the tech was just being thorough and that’s what he thought was needed, but I almost felt like he should have introduced me to his family first, know what I mean?

Anyways, the next thing I remember is lying on the table and the doc saying that everything was fine and that he’d just placed the radioactive beads in my liver just before I felt them attach to the tumor.  At least this time, I was prepared for the pain involved and was able to keep myself from moving around too much and freaking everyone out.  They eventually slid me over to the original gurney and took me for a gamma ray scan to what I think measured the amount of radiation I was emmitting.  I don’t know what it really did, since they didn’t tell me, but they did run a gieger counter over me too, so maybe I’ll turn into the hulk when I get angry.  One can hope!

Once up in the recovery room, I had a roommate who I think they placed us together on purpose to complete the Weapons of Mass Destruction room.  I was the equivalent of a dirty bomb, and the chemical warfare emanating from his butt was horrible, although they did sound worse than they smelled, although that was still pretty bad.  The first time he rattled the windows though, I thought it was an earthquake.

The rest of the day was pretty unremarkable, since all I did was sit in the back of the truck and enjoy the ride home.  Then, once I got home, I pretty much just went to bed.  I was TIRED.

This morning started at 2am though.  I woke up and found my heart was racing, so I took my meds and tried to go back to sleep.  However, I kept waking up all morning long and finally got up for good at 9am or so because I had a sharp pain in my side and my shoulders were aching.  I kept taking my pain meds and finally got it under control around 2pm, but I’m still not feeling 100% and I still feel some nausea and indigestion, but it’s nothing I can’t live with. 

That’s all for now, I think.  I hope everyone had a good summer and I’ll be writing more from now on, promise!

Jeff is having computer trouble and for some reason, won’t use mine, so here’s an update.  Jeff is doing great as far as his cancer is concerned.  His CEA (cancer markers) went down as low at 11.8 in June.  He has gained weight, now about 189 pounds.  He is off almost all of his medications.  He is taking an occasional pain pill now because he developed a kidney stone which he hasn’t passed yet.

 His oncologist thought since he was doing so well, it was time to take a chemo break and go check out SIR-Spheres.  We  had checked into it earlier and were impressed with it.  At first, they were thinking, he would not qualify since he was doing so well, and his PET scan showed no activity with the tumors.  However, the special MRI that they do in San Diego showed 13 tumors in his liver with a small focus of cancer.  So,July 8, he had his first treatment and seems to be doing well.  Shelly ran right out and bought him a shirt that says “Caution, I have received radiation therapy. If you can read this, you are too close”.   He hasn’t had any problems with the procedure other than fatigue and his blood pressure has gone back up so he had to go back on meds for that.  He has to have 2 blood tests two weeks apart (just took his first this week) and then an MRI in 6 weeks.  The blood tests are to show his liver function.  If that stays normal and the MRI shows progress with the treatment, they will treat the other side of the liver.

So, we will keep  you informed.  If Jeff doesn’t, then shelly or I will.  Hopefully this will shame him into getting back into the swing of things.

 Nancy 

After several starts and stops, and one screw up that was definitely my fault, here’s the latest news.

When I got myself the heck away from Kaiser, my CEA count was right at 650.  After something like 5 or 6 treatments, that number has been knocked down to 14.5, and anything under 5 is considered normal (but hey, when have I ever been considered normal?).

That means that we are going to go ahead with seeing both the surgical oncologist and the radiation intervention oncologist (say that ten times fast) with plans to do something over the summer.  That means, at the very least, that I just may be done with chemotherapy until July at the earliest, and possibly the entire summer. We shall see, but I’m really hping to be able to take a break.  This stuff is driving me nuts.

The next Relay For Life is on May 15th, and I’d really like to see everyone there.  It’s at the Quakes Stadium in Rancho Cucamonga at the soccer fields, and should be a lot of fun.  It had better be, we’ve spent a lot of time trying to make it so.  I’ve been speaking at several relay functions and at City Council meetings trying to do my part.

I’m really not sure what else to say here, so I’ll keep it simple.  Take care and have a good day!

First of all, the bad news, mainly because I want to end this on an up note.  One of my chemo buddies from when I started, Chip, passed away this weekend.  I just found this out tonight.  It really bummed me out, because Chip was always somewhat of a ray of sunshine at chemo.  He was always upbeat and smiling and never thought negative.  He helped organize a charity event that I know raised a LOT of money for City of Hope this past weekend and when it was ready to launch, he wasn’t healthy enough to attend.  I was able to go, and talked to both Chip’s mother and sister, who were proud of the turnout for the event, but saddened by Chip’s inability to see the fruits of his labors.  R.I.P. Chip, you inspired me.

In a complete 180 degree turn from that info, I found out that my cancer markers, which started out at 860 two years ago, dropped to 77 at one point, then went back up to 648 in January, has now dropped yet again.  After four treatments, my new cancer marker number is…….(prolonged drumroll)……..36.  That’s right, 36!  I’ve been doing a happy dance all freaking day!  I talked to my nurse practitioner and she told me that if my numbers get down to single digits (everything under 5 is considered normal) and stay there for a while, I might be considered to be in remission.  Here’s hoping!

We went down to San Diego last week to investigate a new treatment for Jeff.  It sounds very promising and Jeff seems to be a likely candidate.  It is called SIRT Spheres.  It is done very similar to an angiogram.  Jeff would need to go in and have dye injected through the groin to inspect the arteries in Jeff’s liver.  They have to be able to tell where the arteries go.  They can block off some arteries to the stomach and intestines, but they can’t block the arteries going to the lungs.  The lungs can’t take more than 20% of the radiation so if more than that would go into his lungs, he would not be a candidate.  There are two major arteries feeding the liver.  The portal vein and the hepatic artery.  For some reason, the tumors like the hepatic artery.  If Jeff’s arteries are good for the procedure, he would then go back to the hospital for another angiogram.  This time, they would inject small spheres of radiation through the hepatic arteries which would then seek out only the tumors, delivering the dose of radiation right into the tumors.  The procedure has been used for 5 years and so it is not new and has proven very successful.  The doctors were excited to see Jeff because most of the patients that they see are in their last stages.  We have talked to Jeff’s oncologist and he is also on board. 

 They want to give Jeff a few more doses of chemotherapy and then he would need to be off of chemo for 2-3 weeks before the procedure.  We are looking at May for several reasons.  It would give Jeff more time to do the chemo which also seems to be working (and HE IS OFF OF ALL PAIN MEDS, just an occasional breakthrough pill, Kaiser had him on 60 mg of Morphine morning and night!), but I digress.

The bad news was Medi-Cal will pay for the procedure, but not the medication.  The medication is made specifically for Jeff and comes from Australia or New Zealand (We were told both places, one by the nurse and one by the Doctor)  And the bad news is, the  medication costs approximately $10,000 and Jeff would need 2 doses, one for each side of the liver.  There is a 5% chance it could cause liver failure so that is why, they only do one side so that they don’t damage the whole liver.  So, on May 1, Jeff becomes eligible for Medicare (we already have his card) and Medicare will pay 80% leaving us with approximately $2000 for each procedure—still a stretch, but we’ll work on that.  We are SOOOOOO excited.   The doctors say if we can get his liver cancer under control, the colon is no problem.

Any way, just needed to share the news with everyone.  Sorry it took so long, but we all got sick starting the day back from San Diego—–Maybe it was the shock.  Anyway, Rich and Shelly are back to work, I was the last one to get sick so not quite over it yet, hopefully tomorrow.  Jeff just got a mild case, I think most of his problem was weaning off the pain meds.  It was very necessary since he slept through the whole visit in San Diego which is why I am writing this since he can’t remember anything from that day!

In case you haven’t guessed, this is Nancy,  Jeff’s mom, writing this.