Re: A Rick Update :o)

[Guest guest]

WOW he is so amazing. But truly how are you?

You sound so strong but I know you're heart must be breaking at each change.

I continue to pray for you both.

God Bless

Narice

" As long as I know the WHO

I can bear any HOW

even though I don't know WHY "

(Commentary on Job from Dialogue in Despair)

[Guest guest]

Donna,

I so hoped for better news. You and Rick have fought so hard and are

so courageous.

Please know that I hold you in my prayers.

Sharon

>

> Sorry I've been missing so long ......... as you know, I've been

> caring for Rick and working from home on the Celebrity Charity

event

> I coordinate each year. The event went fine (and THANK GOD IT'S

> OVER!!) and we raised over $185,000 .......... $48,500 of which

> went to our local Cancer Support House. )

>

> Now to the report on Rick. I'm happy to report he is fairly

> stable. Now, he isn't doing as well as my last report ..... but he

> is leveled off and stable. I really don't remember when I posted

> last, but I believe I had just had a brain scan run on him and

found

> that he has leukoencephalopathy (an agressive virus in the brain)

in

> addition to his brain tumor. (A result of the whole brain

> radiation, so much chemo, and a lowered immune system). About two

> and a half or three weeks ago, Rick began to have trouble getting

up

> out of his recliner and off of the commode. Eventually, he could

> not get up and ended up crawling from the commode back to his

> recliner ......... one of the hardest things to watch, I assure

> you. Especially for my big, proud, strong husband of 14 years.

> Anyway, the muscles in his legs just keep gettin smaller and they

> just can't lift 265 pounds well. So, we now have a lift chair and

I

> have placed a bedside commode (extended into the highest position)

> over our home commode. Now he can get up and down ....... but only

> from these two locations and from our bed. He just doesn't sit

> anywhere else. As you can imagine, I am no help in assisting him

in

> getting up ....... as I weigh only 145 lbs ......... so this was

our

> best choice. )

>

> Our Oncologist told me that Rick just couldn't hold on much

> longer ........ but I believe Rick disagrees with him. ;-) Of

> course, I didn't tell Rick, because he has requested to not hear

> that " negative stuff " . Seems to have worked for him ....... as we

> are now in our 25th month of this disease. He is now on Avastin,

> because of the lesser side effects ..... and has had no big problem

> from it. Is it working? We don't know yet ..... he's only had

> three treatments and will have the fourth one next week. His last

> CEA had gone up from 58 to 462 ... but that was pre-avastin and

> after three weeks of no Erbitux/CPT-11. That treatment was

working,

> but he just couldn't handle the way it made him feel (probably the

> CPT-11, due to the fact his body is so exhausted from the constant

> bombardment).

>

> I was able to convince his Endocronologist to let him try an

insulin

> pill and get off the injections ...... and that has worked even

> better than the shots. Of course, Rick is really not eating much

> now ...... hasn't been for about 6 weeks. So I'm sure it's easier

> to keep the sugar levels in check. But, it's still nice to have

him

> not have to deal with being stuck 3 times a day. ) You learn to

> appreciate the little victories with this stuff! ;-)

>

> Rick has NO cancer pain, and still has NEVER thrown up or had

> diarrhea!!!! Now, THAT is a miracle ....... wouldn't you say????

> He does have lower back pain, from being so sedentary and from his

> weight (mostly in his stomach). He still just " feels really bad "

> and is unbelievably exhausted ......... but all things considered,

> we really have no room to complain given his physical disease

> status. For those that aren't familiar with Rick (one of the

> strongest men I've ever seen!!!) he was diagnosed Stage IV in Sept

> of '02 ...... had large tumor removed from colon, over 60% of his

> liver was (and is)burdened with tumors, and 6 of 6 lymph nodes were

> positive. He was diagnosed with a 4cm brain met in March of '04,

> had Whole Brain Radiation treatments, and due to the side effects

of

> the steroids he takes for brain swelling, he developed steroid-

> induced diabetes .... complete with insulin injections every day.

> He suffered a Grand Mal seizure three weeks after the brain tumor

> diagnosis, and has now developed the brain virus I described above

> as a result of all the treatments. BUT ........... he has NEVER

> given up the fight and has been on some form of chemo since October

> of '02. Unfortunately, the very things that got him this far are

> now as devastating to his body as the cancer. So ..... we do our

> best with what we have and we try to make the most of each day.

>

> I have finally figured out how to explain to people what Rick and I

> go through each day .......... have you ever seen the movie " Ground

> Hog Day " ? Well, that is what it's like here at the Sisco house! ;-

> ) We get up each day, hoping that something will be different, but

> our routine is almost identical to the day before. ) Just seems

> we are stuck in this " limbo " and can't get off of high center to

> move in either direction. I keep a good supply of hydrocodone and

> xanax for Rick (and me .... Xanax is my friend!!) ...... in an

> effort to keep him relaxed and restful. Otherwise, he just watches

> the minutes tick off the clock each day and spends it frustrated by

> what he sees as his " prison " .

>

> Well, that's about it for now. I thank you all for your support

> over the last two years ........ and can promise you we would not

> have made it this far without the love and knowledge gained from

> this group. It has had such a big impact on the treatments we've

> chosen and on our attitude!

>

> Love & Good Wishes to you all!!!

> Donna Sisco

> S/O Rick, 50, Arkansas

> 09/19/02 - Diag. Stage IV Colon Cancer with 6 of 6 Pos. Nodes and

> 60%+ Tumor Burden in Liver

> 09/24/02 - 10cm Tumor removed from Colon

> 10/22/02 - Began CPT-11/5FU/LV Chemo - Had some shrinkage in 7

> months

> 06/11/03 - Appt at MD - Suggested changing chemo –

failing

> current treatment

> 07/25/03 - Began Oxaliplatin/Xeloda Chemo

> 10/20/03 - Increased Xeloda – Still failing treatment

> 11/12/03 - Added Celebrex - continued failure

> 01/15/04 - Switched to FOLFOX4 chemo

> 02/23/04 - CEA drops 80 points

> 02/25/04 - First Symptoms of Brain Problem

> 03/01/04 - Brain Scan (MRI/CT) 1 " Brain Tumor - Junction of Left

> Frontal and Parietal Lobe

> 03/02/04 - Began 10 Whole Brain Radiation Treatments and Decadron

> 03/15/04 - Last WBR Treatment

> 03/18/04 – Took last Decadron - extremely fast weaning process

> 03/22/04 - First Grand Mal Seizure (5 day hospital stay)

> 03/22/04 - Back on Decadron, added Dilantin & Insulin Shots (due to

> steroid-induced diabetes)

> 04/06/04 - Resumed Folfox4 Chemo with added drug Erbitux

> 04/13/04 – Not metabolizing Dilantin – adding Keppra

> 04/20/04 - Switched to CPT-11 with Erbitux

> 05/04/04 – Weaning from Dilantin, staying on Keppra

> 05/13/04 – CT Scans showed minimal shrinkage in brain tumor & liver

> tumors, CEA dropped from 360 to 61, also some reduction of swelling

> around BT

> 05/17/04 – Reduced Decadron to 2mgs/day

> 06/14/04 – CEA increases from 61 to 72.9

> 06/25/04 - Ultrasound of abdomen - no ascites

> 07/07/04 - CT of abdomen - Some focal intrahepatic ductal dilation

> 07/13/04 – Placed on Lasix for severe lower leg swelling and

> breathing difficulties

> 07/26/04 – CEA dropped to 58

> 07/30/04 - Lasix increased to 120 mgs because swelling and

breathing

> difficulties returned ... also taking three week break from chemo

> because of feeling so bad and extremely fatigued.

> 08/12/04 – CEA up to 147

> 08/23/04 – Brain MRI reveals stable tumor/edema, but now has

> leukoencephalopathy

> 08/30/04 – Switching to Avastin only – eliminating chemo and

Erbitux

> (This is only because Rick does not wish to stop fighting, and this

> drug seems to have less side effects)