Tuesday, July 17, 2012

get your arses down to the cancer is a cant fundraiser july 28 at 5pm

Tell all of your friends, all of their friends, your family, strangers on the street to come on down to Ye Olde King's Head on Saturday, July 28th at 5pm for the Cancer is a Cant fundraiser and auction. DJ Danny will be spinning the tunes. There will be drink specials. There will be amazing auction items such as a 2 night stay at the Casa del Mar, an iPad2, dinner packages, gift baskets, jewelry, a gift certificate for 2 people to have their makeup applied by a celebrity makeup artist, a gift certificate worth $500 for a cut and color at the famous Fred Segal Salon, autographed Neil Gaiman items, game cards, t-shirt and Farmville plush toys from Zynga and much more.

If you can't make it to the event, please click on our PayPal donation button on the right or send a gift via email at cancerisacant@gmail.com via PayPal and give what you can. Spread the good karma. Share on Facebook, Twitter, Google+, MySpace.

Let's make this an event to remember!

Please note this website is still a work in progress and I am doing my best to get the story completed. So check back often.

Sunday, June 10, 2012

our first cancerversary


Today marks a year since we found out Paul had cancer. Well, I should rephrase that and say it's a year since I found out about his cancer. But since we have different days of revelation, we have opted to consider today the day. Sadly we couldn't do anything to celebrate the occassion since Paul is still extremely frail and has a hard time walking due to the neuropathy in his feet and getting out of breath after just slowly walking a few yards. Still, the fact that he made it to the year mark is a major accomplishment.

What you see above is a picture of all of the prescriptions that he has been given over the last 365 days. Yes, I've made him keep all of the empty bottles of pills, lotions, mouthwashes, fiber, laxatives, immodium, vitamins, etc. The picture doesn't really capture the enormity of it since I had to stack a lot of them on top of each other in order to get them all in the picture. The scariest part is that if we were to pay retail for all of this, the cost would be somewhere in the neighborhood of $70,000! And that's not even including the 14 bags of Oxaliplatin that he has received which would total $350,000 and the 10 tiny bags of Avastin which ring in at another $100,000.

Makes your head spin, don't it?!?!

Wednesday, March 14, 2012

scanxiety nightmare part 5

This is just starting to become a joke. I called yet again to see if I can get the infamous comparison report. I figured after the oncologist's call to the imaging center that something would get done but, alas, that was me just trying to be positive, something I have not ever been very good at.

There is only one person in the records department who will even speak to me at this point. He informed me that the radiologist was to have this report done a few days ago. I corrected him and said, "don't you mean weeks ago?" He then informed me that the radiologist was running into problems doing the report because "it is complicated." I told him that I found it amazing that after now five weeks of waiting for this all important report, why can't the radiologist ask for help from her boss or another more qualified colleague. I mean if there was something I didn't know how to do in my job or was having problems with I would ask for help. It's not like we are dealing with a broken arm or a cold - he has STAGE 4 CANCER!!!!!!

I am seriously considering pitching a tent in the middle of their reception area and staging a protest until I get that damn report.

Friday, March 9, 2012

scanxiety nightmare part 4

So we went to the oncologist today for our usual check up and chemo #10 and guess what still no comparison report. The doctor is beyond livid and got on the phone right then and there in the hall way and we could hear him yelling at the imaging center about how this needs to have been done weeks ago. We shall see if that gets theirs asses moving. Just unbelievable.

As for the kidney stone and spinal degeneration things, there is nothing anyone can do to fix them so we just have to wait it out and see what the comparison report says about the tumors and to see if Paul passes the kidney stone. Trust me I am NOT looking forward to that at all.

Thursday, March 8, 2012

scanxiety nightmare part 3

Well, guess what, after numerous calls from me, I finally received a report for the PET and CT scans but it's absolutely useless to us. There is no comparison, no measurements of any of the tumors, nothing. The only thing it revealed is that Paul has a 3mm kidney stone in his left kidney and some form of spinal degeneration. I sent it to the oncologist, who had also directed his staff to demand a copy of the report and by the tone of his email, he was none too pleased with the half-assed report that we received.

We shall see if he gets anything in tomorrow morning when we go for Paul's check up and chemo appointment.

And people wonder why my blood pressure is through the roof.

Tuesday, March 6, 2012

scanxiety nightmare part 2

Will this nightmare please end? Today's call with the imaging center was yet another chapter in the file "I couldn't make this up if I tried." So after last week's debacle of getting DVD's over to them, they call me late this afternoon to ask me if I have a copy of Paul's former scan reports. Little did they know, that in my backpack I have every document that you can imagine since this whole thing started. Thus, the guy on the other end of the phone was shocked when I asked him what his fax number was so I could send it over right then and there and that I would not hang up the phone until he told me that he was in receipt of the reports.

He tells me that he has what the radiologist needs and that it should be another day, two at most to get the reports. I tell him that that is good to hear since Paul's next chemo session is on Friday and we need those results no later than 9.30 Friday morning.

Let's just see what transpires in the next 48 hours.

Thursday, March 1, 2012

scanxiety nightmare part 1

I got a call yesterday from the imaging center. It appears that no one thought to inform either myself or the oncologist that they needed a copy of Paul's previous scans. So I get on the phone to the hospital to their records library to see what I need to do to get this done. Well it rings and rings and rings and rings. No voicemail, no answer, nothing. So I talk to my boss and let him know what's going on and that I will be in late the next morning because I need to swing by the hospital to get these DVDs.

Good thing I tried calling them on my way there. Finally someone answers and informs me that they need Paul to fill out a form to allow me access to pick up the DVDs. I get it filled out and as I am passing my best friend's work, I swing by and drop off the fax for her to send over so that it will be there by the time I find parking and find the location.

I get there and I'm told that they have received everything and are currently burning the discs. Far too easy. Keep in mind I didn't have Paul's social security number on me so I just made one up on the form and they never even checked it. Just goes to show you what I'm dealing with.

They hand me over the mystical DVD and I go to the car, pull out my laptop and in true MI5 style, I start uploading and copying the disc to my hard drive just in case I ever need to reference it. I, then, make my way to the oncologist's office and drop off the DVD to them because that was the instruction given by the imaging center. I'm still not sure why I couldn't just drop it off to them since the doctor already has access to the scans in his system but it is what it is.

I call the imaging center later that day to make sure that they have received it and they ensure me that they have and that the report should be forthcoming.

Monday, February 27, 2012

scanaxiety continues

I'm impatient. I am woman enough to admit that. I waited until late afternoon to email the oncologist to see if he has received the scan reports. Nothing yet. No biggie. I'll just bug him again on Wednesday since that will be more than enough time to get the reports in. Meanwhile, cue the nail biting.

Saturday, February 25, 2012

who knew cancer could be lucky

My best friend had an extra ticket to a comedy show in Vegas this weekend. Her original guest, her boyfriend, couldn't make it at the last minute so she asked me if I would take his place, which I've done often in the past back in my pre-cancer life. With only a week's notice, I made arrangements for one of our friends to spend the night with Paul since it would be yet another 23 hour trip away for me and as he is in the middle of this round of chemo, there was no way that I was just going to leave him alone for the night. Yes, I'm neurotic but honestly, after having to witness so many of his pain episodes, there is NO way I am just leaving him alone for the night.

So with arrangements made, we trekked across the desert with her dog, Rocky, in tow. We took a bit of a side trip to Pahrump to drop off Rocky at her parents and headed over to Sin City for a night of great food, laughs and a bit of gambling for me. Since it was so last minute, I grabbed a cheap hotel courtesy of Priceline. It so happened to be at Hooters which is conveniently located near the airport where I had a flight home at the crack of dawn.

My best friend is cursed by the number 27. It appears everywhere for her and once she tells the story, you, too notice the number everywhere. So after dropping all my bags off in the room, I debate whether to go downstairs to the casino and gamble a bit. I check to see how much cash I have in my wallet and lo and behold, I had $27. Certainly a sign for me to test my luck. I hit a roullette table which has one empty chair next to all of these young kids who all just turned 21. So I put a chip on 23 and 9 (the last two numbers from Paul's CEA test) and try my luck. Nothing. I try again. Still nothing. I figure third time is the charm and voila - my $5 chip miraculously paid out $175. The guys at the table all assumed that I was playing my "boyfriend's birthday" or some such date and I informed that it was my husband's latest cancer marker test and they all yelled out "Dammmmmnnnnnn." I took my winnings and went back upstairs and tried to get a few hours sleep.

The next morning I dragged my exhausted self to the airport where I learned the flight was delayed for 2 hours. So I wandered around and decided to play the slots with the change left over from my coffee and another $40 was won. I decided it was time to just get on the plane and head home to my patient.

See cancer can be lucky sometimes.

Friday, February 24, 2012

scanxiety again

Thanks to all of the nightmares with our health insurance and the Continuity of Care and an inept medical office, Paul is finally undergoing his second PET CT scan to see what's going on in that body of his. This was supposed to be done just after the holidays, but the oncologist's office dropped the ball and never put in the order, then add the Continuity of Care debacle and of course, the COBRA debacle, it's been a tedious time of waiting for the day when we can finally get a prognosis report of what is actually going on. Sure, the continuing drop in CEA levels is a good indicator but they are by no means definitive. And since he has chemo in two weeks, it's perfect timing so that if the scan shows anything untoward, we can have his chemo adjusted.


Instead of going to our usual Santa Monica UCLA scanning clinic, we are sent to Tower Saint John Imaging Center. It's a much posher imaging center. The waiting room is bright and airy despite no wifi. Paul said the room he was put in to drink his contrast was like being in a spa. So all good.

He finishes up. We check to see if the local pub is open so we can have a quick English breakfast but it's not. So I take him home and head back to work. We should have the comparison reports with any luck on Monday if not some time next week. The waiting is the worst part of it all but it is what is and you just try to forget that you are awaiting some major answers. Here's to hopefully another report that shows some more major shrinkage.

Friday, January 6, 2012

chemo day – oxali #7, avastin #4, continuity of care round 4

Well, we had the usual follow up appointment with the oncologist and I explained that I was awaiting a call from Blue Shield about our request for Continuity of Care. His whole office is aware of this nightmare as it has affected over 70,000 subscribers in a 10 mile radius. The office is void of patients so it’s not just us. He says let’s just get it done and worry about it later. Easy for him to say since he won’t be the recipient of a five figure bill but I just tell myself you can’t get blood from a stone.
Once we wrap up with him, we shuffle off across the hall to the infusion center. They do the usual vitals, pre-meds then Avastin. I take a quick break and run downstairs and lo and behold there is a voicemail on my mobile from Blue Shield.  The message stated that we could proceed with his appointment and his chemo. Just 3 hours too late but nonetheless, I have it on record that they have said that he can have treatment and that the Continuity of Care is in process. I’ll live with that but I won’t give up the calls until I get the magic golden ticket that says we are fully approved.

Thursday, January 5, 2012

continuity of care – round 3

I called again to see if approval had been granted and was told not yet. So we are going ahead with the appointment tomorrow. No choice in the matter. I’m beyond annoyed and aggravated that I am paying $900 a month for this kind of runaround but it is what it is.

Wednesday, January 4, 2012

continuity of care – round 2

My gut instinct was right not to trust these customer service people at Blue Shield. After yesterday’s two hour debacle on the phone with a host of players, I was informed today that we need to fill out a form and send it over to them so that they can start the process. Why no one yesterday told me about this and that was with me asking them if there was any paperwork that needed to be complete is just unfathomable.

I faxed over the form and called again to make sure that they have received it and to get someone to say the magic words that he can go ahead with his appointment on Friday. The first person I spoke with said that they did receive the fax and asked  me, “Why can’t he just postpone his therapy appointment?” I informed this nimrod that it was chemotherapy and not just therapy. I called again because I didn’t trust nimrod #1 and nimrod #2 said that they didn’t have a record of the fax and to resend it so I did with them on the phone and this joker advised me to just pay upfront for the chemo appointment. I explained in a heavily sarcastic tone that I would love to do that but the holidays were a bit rough this year and that I didn’t have a spare $36,000 just lying around at the moment. My sarcasm was wasted on nimrod #2. Finally on my third call of the day, I was connected to Saint Sally as I will now refer to her. She personally walked over the form to the Medical Management office which is the department that deals with the Continuity of Care (another fact no one had bothered to tell me about) and that we should proceed with the appointment because she understood that delaying chemo can be a do or die situation. I thanked her and she told me that someone would be calling me back to confirm that he was ok to go to his appointment but regardless, we were just to go.

Tuesday, January 3, 2012

continuity of care – round 1

Well, I called Blue Shield first thing this morning. I was told that they would put my request for the Continuity of Care into the system and that they would rush it so that his appointments on Friday would be covered, but they explained that this usually takes at least 2 business weeks to get completed. That was just not a good enough answer for me but I’ve decided to wait until tomorrow to follow up on this. I’m already exhausted after this first call where I was transferred to about 3 people, all of whom I don’t trust in the least.